tag:blogger.com,1999:blog-72387800076211495392024-02-07T20:19:38.610-08:00Booby and the BeastMy journey through metastatic breast cancer - diagnosis, treatment and, eventually, recovery.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.comBlogger313125tag:blogger.com,1999:blog-7238780007621149539.post-36741927496945890042021-08-19T17:04:00.001-07:002021-08-19T17:04:31.463-07:00A Decade<p>Does this thing still work? Do people still read blogs? </p><p>God knows people are still being diagnosed with cancer. </p><p>I know it has been a minute. There was (is) a pandemic. We had a toddler, now preschooler. I started a <a href="https://jennifercampisano.cabionline.com" target="_blank">business</a>. I wasn't sure our marriage would survive, and I'm only being a little facetious. We had to work through some <i>things</i> while a 3yo, albeit a cute one, threw herself at us with the force of a small bull, dumped over her full cereal bowls, dropped chicken nuggets in our drinks, bit her brother (but promised not to cut him because she "likes him"), and screamed with a volume that should put her in the running for starring in horror movies soon. </p><p>She's adorable, really. But it has not been an easy 17 months, and I say that as someone who has been through a bit.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAcjQjcvpgAP8TcHlBmrlUF6yRIcKBl49LI-sMmjcu5ztePp_eXY6t6-su5S96-EO8u6RJtZdHULwVSGI4r0sxd9HKGTHIm_Fzz1H3l-ik6LUSQZ9rDBMCbwJGJgMiCmyDs-OznDaZiSGK/s2048/D786D4ED-B074-4E73-A300-0CF78B715FB5_1_201_a.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAcjQjcvpgAP8TcHlBmrlUF6yRIcKBl49LI-sMmjcu5ztePp_eXY6t6-su5S96-EO8u6RJtZdHULwVSGI4r0sxd9HKGTHIm_Fzz1H3l-ik6LUSQZ9rDBMCbwJGJgMiCmyDs-OznDaZiSGK/w640-h480/D786D4ED-B074-4E73-A300-0CF78B715FB5_1_201_a.heic" width="640" /></a></div><p>How have you all been? I've missed you. </p><p>So why now? Why show up this Thursday afternoon in the middle of August to say hi? </p><p>This morning, I was skimming through a text chain amongst some mom friends of mine just after I dropped Noelle off at preschool. One mom's 3rd-grader is being bullied about her weight. In third grade. Her freaking weight, you guys. </p><p>This message from another friend in the group had my eyes burning and tears on my cheeks before I'd even left the school grounds: </p><h4 style="text-align: left;">"Being a girl is hard and I wish younger girls learned earlier to lift each other instead of tearing each other down, it makes for such a better existence." </h4><p>I thought of how grateful I am for my college friends who cut off their hair to surprise me with a wig when I started my second course of chemo. How much I appreciate other moms who will tell me when my kid is out of line or doing something that should make us all proud, women who join me whether I need a glass of wine or a long walk in the morning, and who show up for each other week after week because it takes a village. I can't imagine my life without my village of women.</p><p>I would not have gotten through the last decade without them. The ones who sent me notes to say, "You should talk to my cousin who was diagnosed while pregnant," or "Cancer is the worst club with the best people," or "I love you. One moment at a time. Just breathe." </p><p>Breathe. Because you can today, and sometimes shit goes haywire and breathing isn't easy. Or your friend's lungs fill up with cancer-riddled fluid and breathing is nearly impossible.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzilcgz0v9fmwNxR5uVSf6dxXrYVbw5Bcpys2A-aM-X8dpVS5yTkAW3LbumHzMm-e8o5lGfiDzYQ4pyV2-83lE6Lf2fyEyVl-jrmnd3p7JH8-UKRlKfEQzoO64T3cDuhQPUNPHOdu27NY/s1688/ECCB0F66-3375-4147-950A-D16717CE59A1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1688" data-original-width="1688" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzilcgz0v9fmwNxR5uVSf6dxXrYVbw5Bcpys2A-aM-X8dpVS5yTkAW3LbumHzMm-e8o5lGfiDzYQ4pyV2-83lE6Lf2fyEyVl-jrmnd3p7JH8-UKRlKfEQzoO64T3cDuhQPUNPHOdu27NY/w640-h640/ECCB0F66-3375-4147-950A-D16717CE59A1.jpeg" width="640" /></a></div><p>Today marks TEN YEARS since I was diagnosed. A decade since I drove the two miles home from the radiologist's office in a fog of fear, like the hands of the grim reaper himself were wrapped around my throat and closing off my air supply. I came home to my infant son and my husband, who was standing in our small kitchen. I told him that I had cancer. "I don't fucking believe we're having this conversation." And I felt disappointed, devastated, crushed at having to share that news with him of all people because he'd lost his dad to pancreatic cancer two years earlier. </p><p>Time is a bittersweet pill. I celebrate being here. As I've rocked her at night, I have probably asked my daughter a hundred times, "How are you here?" The miracle of it astounds me. My husband jokes she is the only egg that could have survived. She is tenacious, feisty, combative, defiant, and 110% sure of herself. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixotfKrjaxNkownUEQW6nsaifR5c5mdYpxMwZjzy7gX_CBgSJWA3Kn1AfBQ5ZqKRq2meI-yoIwxTRQl22_d236jKDrAGSUYyeAaFIiK_jex879BNbY2-sXseI-OmfXbEPGnuSn0A-tPmJI/s2048/F3C4B60F-2BFE-4B79-8E0C-435FC351C722.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1367" data-original-width="2048" height="428" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixotfKrjaxNkownUEQW6nsaifR5c5mdYpxMwZjzy7gX_CBgSJWA3Kn1AfBQ5ZqKRq2meI-yoIwxTRQl22_d236jKDrAGSUYyeAaFIiK_jex879BNbY2-sXseI-OmfXbEPGnuSn0A-tPmJI/w640-h428/F3C4B60F-2BFE-4B79-8E0C-435FC351C722.jpeg" width="640" /></a></div><p></p><p>How am I here? I didn't think I would be. And I grieve. My heart still hurts for my friends who are gone. Brigid. Renee. April. Emily. Andrea. Holly. Adrienne. Beth. Colleen. Katherine. Jody. Cristin. Carolyn. Michele. Sarah. Mandi. Anna. Chiara. Rebecca. Roberta. Joanna. Too many to name.</p><p>So here's what I've learned in the last ten years. People are mostly good, and mostly want to help. I still believe that, even if we've seen a lot of selfishness the last year. Women are badasses, and I feel lucky to be one and have the opportunity to raise one. You have to be your own best advocate. Our medical system is in disarray, and doesn't work well for those who need it most. Stand up for yourself, and speak up when something doesn't feel right. Even when it's scary. Especially when it's scary. Sometimes you have to be as loud as a 3-year-old to get what you need in this world. </p><p>I think this is a good stopping point for my blog. Ten is a nice round number. Please keep in touch. Find me on Facebook or Instagram or even Twitter occasionally. Send me a text or email. I love you all, and you have sustained me in my darkest hours. I mean it.</p><p>Who knows? Maybe I'll finally finish that book of mine. </p><p>XO</p><p>Jen</p><p><br /></p>Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-11727921276575044912020-12-04T05:58:00.000-08:002020-12-04T05:58:12.193-08:00A Beacon of Hope on the Navajo Nation<div><span style="font-family: inherit;">This post was written in partnership with AstraZeneca. All opinions are my own.<br /></span><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;">2020 might be a mess of a year, but it is showing us some important truths about our world. I have talked a time or two about disparities in healthcare access and outcomes. Black women, for example, are 42% more likely to die from breast cancer than white women, even though incidence rates are mostly similar. These disparities are not new, but to the extent they weren’t widely known, they have become abundantly clear this year as we face a pandemic that has hit disadvantaged communities especially hard. <br /></span><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;">When we think of disadvantaged communities, though many Americans don’t immediately think of Native Americans. Here’s why we should.<br /></span><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;">The Navajo is the largest reservation in the United States, about the size of West Virginia, extending from northern Arizona to southern Utah, and into Colorado and New Mexico. About 250,000 people live on the reservation. More than 50% of Navajo families live below the poverty line, up to 40% of households do not have running water (exacerbating the Covid-19 crisis), many Navajo live with several generations under one roof, and hundreds of miles of unpaved roads mean that it can take hours to get to medical facilities in larger population centers like Flagstaff or Phoenix. <br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;"><span style="line-height: 15.6933px;">Over the weekend, the Nation instituted another lockdown because of “uncontrolled spread” of coronavirus on Tribal lands. Limited healthcare facilities make treatment options scarce when Covid does strike. In a six-part series on </span><span>the links between racism and Covid-19,</span><span> </span><a href="https://www.usatoday.com/in-depth/news/nation/2020/10/12/coronavirus-deaths-reveal-systemic-racism-united-states/5770952002/" style="color: #954f72;">USA TODAY</a><span> </span><span>highlighted these disparities. “On the Navajo Nation, inadequate resources have resulted in widespread water poverty, food insecurity and high rates of illness. These daily realities were devastating long before the pandemic, but they’ve also helped fuel a high COVID-19 death rate.”</span></span><br /><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">I was at a conference for cancer advocates in January (back when conferences were still happening), at which a woman from the Navajo nation spoke about how living conditions, poverty, pollution in the form of abandoned uranium mines, and distance to treatment facilities negatively affect cancer outcomes for Native Americans. The data backs this up. While Native American women are less likely than whites to be diagnosed with breast cancer, other cancers are on the rise – and frequently caught in later stages when fewer treatment options are available and the diagnosis is too often terminal.<br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">Last week, I had a conversation with Lynette Bonar about the work she’s doing to make significant improvements for the Navajo community. She is the CEO of the Tuba City Regional Health Care Corporation (TCRHCC), a nonprofit organization that provides health care in the western part of the Navajo Nation in Arizona. Last year, Bonar’s organization opened the <i>first</i> cancer center within the boundaries of a Native American reservation. Not just the first on Navajo lands, but on <i>any </i>reservation in this country. The new oncology and hematology clinic, called the Specialty Care Center, received its first patient on May 14, 2019, and began giving patients chemotherapy infusions in June 2019. </span></div><div><span style="font-family: inherit;"><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8e4_NmoTcdvHRN83oLG3SGv0nECunbMTk6T4OFqqH5niZAdVci2u6mdWixS5-iBz3eTI2FTsFEGEyPxUZFaJ3KBO0FUueq701t1Wvx7suh_UpTSnSZc7LPAOCv9jT-ZZMF2Q1ZLXLpj2X/s2048/Lynette+Bonar.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1365" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8e4_NmoTcdvHRN83oLG3SGv0nECunbMTk6T4OFqqH5niZAdVci2u6mdWixS5-iBz3eTI2FTsFEGEyPxUZFaJ3KBO0FUueq701t1Wvx7suh_UpTSnSZc7LPAOCv9jT-ZZMF2Q1ZLXLpj2X/w426-h640/Lynette+Bonar.jpg" width="426" /></a></div><br /><span style="font-family: inherit;">Bonar explained the years-long process of opening the Care Center’s doors. A nurse by training, Bonar saw firsthand the toll a lack of facilities was taking on her patients and neighbors. One woman didn’t want to burden her kids to drive her the 150 miles to Flagstaff, fearing they’d lose their new jobs if they took too much time off. Instead, she opted to forego treatment. People with very treatable cancers were not seeking treatment because of the barriers to care. Many diagnoses were happening in the Emergency Department, when the cancer had already spread and was causing physical symptoms. Bonar wanted to change that. <br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">In 2013, she started talking to two oncologists/hematologists, and asked them, “If I build this, will you come work here?” like something out of “Field of Dreams”. They said yes. The husband-and-wife team are not Navajo, but are dedicated to treating Native Americans. <br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">Working with local nonprofits and using the Tribe’s own capital, Bonar was able to raise the $2 million necessary to build the state-of-the-art facility. But she also had to lobby regulators to change the payment models for reimbursements to include cancer care at an Indian Health Services facility, something that wasn’t covered before. <br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">In the last year, Bonar estimates the Specialty Care Clinic has served more than 1200 patients, and their outcomes are far better than what they used to be. Patients can receive screening, chemotherapy, and other infusions at the Tuba City facility. For radiation and other specialty services, patients still have to travel to a larger medical center like Phoenix (about 250 miles away).<br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">For her relentless efforts to level the playing field and erase some of the disparities that exist in this community, <a href="https://bit.ly/318nxFp" target="_blank">Lynette Bonar was recently awarded a Catalyst for Change Award, part of the Cancer Community (C2) Awards, created by AstraZeneca and Scientific American</a>. The awards aim to honor the unsung heroes of cancer care, including healthcare professionals, researchers, caregivers, advocates, educators, and any individual or organization offering relief in extraordinarily difficult times. <br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">Bonar was chosen as the winner of the Catalyst for Change Award, for working to significantly improve the ability of underserved populations to receive high-quality cancer care. Not only did Bonar establish the first cancer facility on an American Indian Reservation, but she is also the first Navajo woman to helm a Navajo healthcare system.<br /></span><o:p><span style="font-family: inherit;"> <br /></span></o:p><span style="font-family: inherit;">I asked her what she would want her message to others to be, what the world should learn from her story. She said: “People don’t realize there are so many health disparities. What we have to go through to get to an equal playing field for healthcare is so much. COVID-19 has highlighted our struggles. With cancer, we’re not the only ones facing this. There are other rural communities without access to treatment. The United States needs to work to improve this.”</span></div><p class="MsoNormal" style="line-height: 15.6933px; margin: 0in 0in 8pt; text-align: left;"><span style="font-family: inherit;"><o:p></o:p></span></p>Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-37360199037646129032019-09-24T15:03:00.002-07:002019-09-24T15:10:24.611-07:00When Checking-In is No Longer an OptionLast week, <a href="http://www.theresasresearch.org/" target="_blank">Theresa's Research</a> and the Mayo Clinic held their sixth annual Metastatic Breast Cancer Conference. It was here in Scottsdale, so I lined up childcare for two days (though I keep wishing conferences would add it to their offerings) and drove down the street to see what was new in research and give hugs to a few of my friends -- Susan and Kelly and Julia and Christine and Jersi and Janice and Kate, for starters.<br />
<br />
I first met Kate five years ago when I went to DC for a friend's wedding and to get my nipples tattooed by <a href="http://vinniemyers.com/section/386299_Vinnie_Myers.html" target="_blank">Vinnie</a>. It was springtime, and pouring down rain. We met at the Museum of Natural History because I couldn't figure out where else to go with my 3-year-old son in a downpour. A million other people had the same idea, but Kate patiently sat with us in the cafe as Quinn ate gummy worms and we talked about <i>my </i>metastatic disease and what it had been like to see Vinnie. At the time, Kate was an early-stage survivor but always <a href="https://www.washingtonpost.com/lifestyle/style/with-breast-cancer-discovered-at-age-26-a-young-woman-confronts-her-mortality/2013/05/13/cda78518-6b25-11e2-95b3-272d604a10a3_story.html" target="_blank">a strong advocate</a> for research. She'd been originally diagnosed when she was 25.<br />
<br />
Last year, she was diagnosed with mets. Now, she (and thousands just like her) is anxious for additional treatment options.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEippAIcqlM51tgAP5L26x7MnVU6LkvDbfpohBGHREhpSEMulVsvxV012XSMsLWN6YS7yA8QO-baLYOpq0vauxfjB_Ln3KxmciTBrqyE7S712Ic7jXlzQuqRX6nP_q0RBSFe7PJtHVr5nS2-/s1600/IMG_5203.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEippAIcqlM51tgAP5L26x7MnVU6LkvDbfpohBGHREhpSEMulVsvxV012XSMsLWN6YS7yA8QO-baLYOpq0vauxfjB_Ln3KxmciTBrqyE7S712Ic7jXlzQuqRX6nP_q0RBSFe7PJtHVr5nS2-/s640/IMG_5203.JPG" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kate and me in DC, 2014</td></tr>
</tbody></table>
"I'm so glad you're okay," she told me between sessions as we sat next to each other in the chilly conference room on Friday.<br />
<br />
"Thanks," I responded. "I want you to be, too."<br />
<br />
"I won't be," she said, and we both teared up and looked away from each other.<br />
<br />
Kate was in town with her dad, and I spent a while talking to him about his frustration and anger. We need to do more, and better, for the nearly 42,000 women and 500 men who are <i>still</i> dying of this disease every year.<br />
<br />
Because we still don't have enough options, and so many of the sessions we heard about were on cellular pathways in mouse models -- still likely a decade away from clinical trials.<br />
<br />
There was one session on outliers, those who live more than a decade with metastatic disease. People like my friend Dikla, who just passed 17 years since her MBC diagnosis. Not everyone diagnosed with MBC will die from it, and <a href="https://outliers.cancer.wisc.edu/" target="_blank">researchers are still trying to find out <i>why</i></a>. What makes those people unique, while others are failed by treatment after treatment?<br />
<br />
On the first day, I met an older woman with a strong New York accent. She told me about her son with cerebral palsy, and how he's the most successful of her kids, how she must've done something right. She complained about her doctor's recommendation that she lose some weight as she snacked on a bag of conference-issue potato chips. She said 'fuck' a lot, and I liked her right off the bat.<br />
<br />
Friday morning, I asked her whether she went by Liz or Elizabeth. "It's Nicole," she corrected, and we laughed about the lingering effects of <a href="https://www.curetoday.com/articles/fatigue-chemobrain-and-other-cancer-symptoms" target="_blank">chemobrain</a>. Later, as we were saying goodbye that afternoon, she said, "You know, I really don't know what to say to people who tilt their heads -- you know, like this," she demonstrated with an exaggerated ear-to-shoulder move, "and want to know how I'm doing. 'No, how are you REALLY doing?'" she imitated, clearly annoyed by the question, or the pity it evoked, or both.<br />
<br />
We wondered whether people really want to hear all the side effects that cancer patients, especially metastatic patients, face on a daily basis. Do well-meaning friends really want to know how fatigued she is feeling? That her nails are ridged (as are mine, years later) because the chemo is so harsh? Or should she just respond, "I'm here today, thanks for asking," and keep it brief but polite?<br />
<br />
***<br />
<br />
On Sunday evening, as I lay on the couch next to Quinn, who was watching an NFL game and planning for his fantasy football league, I opened Facebook on my phone and gasped audibly. Quinn turned to me and asked what was wrong. I stammered, not wanting to share with him, but I couldn't stop the tears. "Mom, what is it? What happened?" I took a deep breath and sighed heavily. "My friend died," I admitted. I got up, walked into our kitchen, put my head in my hands, and sobbed.<br />
<br />
The news floored me, and shook much of my online community. Just a couple of weeks ago, Berta had posted she was starting a new combination chemo. I didn't know what else to say, so I told her I loved her. I hadn't seen any updates since then, but I also hadn't checked in. I hadn't asked how she was doing because I figured the daily was probably shit on new chemo, but I also didn't think she was doing so bad that she'd be gone this quickly.<br />
<br />
<h3>
News in cancerland can change so quickly. We can anticipate death for years, but when it happens, it is sudden. We can make the choice not to check in and then checking in is no longer an option.</h3>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I met Roberta online years ago, and we became fast friends. We were both youngish moms living with cancer and trying to make it to the next milestone. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
A couple of years ago, just after my sarcoidosis <a href="http://www.boobyandthebeast.com/2016/10/an-announcement.html" target="_blank">announcement</a>, I got to meet Berta in person at the YSC conference in Oakland. We hugged tight and she asked me to dinner with the mets sisters. We all spent the night laughing about our "boobs," for some the perils of dating, for others raising kids, getting away for girls' time, and the deliciousness of Justin cabernet. I bought her a glass, and Berta joked, "That Justin, I just love him." God, she was funny. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtWLZ13m3cxMvS5wvUwEupCrzHM0MHIAhHC9QgNSbjJm2Eo754pg3PziyfQQZW26IDIICdlwCzmH-6gqRHQ9AIBl3ohQ1uT8oE7u9oUqQkzppMCr96vC3ACpHbTmSov6EtsUQOSPzlEtCV/s1600/IMG_1341.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1440" data-original-width="1440" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtWLZ13m3cxMvS5wvUwEupCrzHM0MHIAhHC9QgNSbjJm2Eo754pg3PziyfQQZW26IDIICdlwCzmH-6gqRHQ9AIBl3ohQ1uT8oE7u9oUqQkzppMCr96vC3ACpHbTmSov6EtsUQOSPzlEtCV/s640/IMG_1341.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">8 of the 10 women in this photo have or had metastatic breast cancer. 2 are now gone.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrxvP1kRdZE7GxPBpzjJCzfB6NCY_wmnrsNKFVdRdbpfZcWgmNRgaSqmyIYBWdfJPxOXma2qXSAGD0A9sNRWj8PdqGHxw1TEPgaUIm2NZPQVUepWFloCRlNtpGH710kz210cdvW2xH1NzL/s1600/IMG_1346.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="730" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrxvP1kRdZE7GxPBpzjJCzfB6NCY_wmnrsNKFVdRdbpfZcWgmNRgaSqmyIYBWdfJPxOXma2qXSAGD0A9sNRWj8PdqGHxw1TEPgaUIm2NZPQVUepWFloCRlNtpGH710kz210cdvW2xH1NzL/s640/IMG_1346.JPG" width="486" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jessica, April, Roberta, and me</td></tr>
</tbody></table>
I am frustrated, and angry that my friends don't have more options yet, and so very sad for their loved ones. <a href="https://www.legacy.com/obituaries/postgazette/obituary.aspx?n=roberta-lynn-szpara-thomas&pid=193978840&fhid=9774" target="_blank">Roberta</a> leaves behind her family, including her son, who just started middle school, and twin daughters who began first grade this month.<br />
<br />
I don't know what else to say, except: check in on your friends often, without pity, because you really do want to hear about their chemobrain and lack of appetite and how they're talking to their kids about it all. And please donate to <a href="https://www.metavivor.org/" target="_blank">METAvivor</a> to help speed research along.<br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-10790508703170985842019-08-26T15:48:00.000-07:002019-08-26T15:48:17.103-07:00The Upside of DownSometimes the world feels upside down. It can be scary, but a friend once told me scary isn't always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXhcYfjro4blJp8BhQYouj3dGzZXwpGgObpcLj7YONoa5rep4jx2IDgXdhYRpztbjRxenlUr5UdKXJul96u7xs5REVagVBfbR6WsCP6nhHhSHSbmsIa0mWU4TiL1X51PIWo_hOrSHa-ntw/s1600/fullsizeoutput_58cb.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXhcYfjro4blJp8BhQYouj3dGzZXwpGgObpcLj7YONoa5rep4jx2IDgXdhYRpztbjRxenlUr5UdKXJul96u7xs5REVagVBfbR6WsCP6nhHhSHSbmsIa0mWU4TiL1X51PIWo_hOrSHa-ntw/s640/fullsizeoutput_58cb.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo by Quinn. My holding a handstand, like me, is a work in progress.</td></tr>
</tbody></table>
My world has certainly felt upended -- over the last few years <a href="https://www.boobyandthebeast.com/2016/10/an-announcement.html" target="_blank">since my diagnosis changed</a>, yes, but also very acutely over the past few months. Is it the alignment of the planets? <a href="https://brenebrown.com/articles/2018/05/24/the-midlife-unraveling/" target="_blank">A midlife unraveling <i>a la </i>Brené Brown</a>?<br />
<span style="caret-color: rgb(28, 45, 63); color: #1c2d3f; font-family: Georgia, Times, "times new roman", serif; font-size: 18px; text-align: justify;"><br /></span>
<div style="text-align: center;">
<span style="caret-color: rgb(28, 45, 63); color: #1c2d3f; font-family: Georgia, Times, "times new roman", serif; font-size: 18px; text-align: justify;">'Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife </span><em style="-webkit-font-smoothing: antialiased; box-sizing: border-box; caret-color: rgb(28, 45, 63); color: #1c2d3f; font-family: Georgia, Times, "times new roman", serif; font-size: 18px; text-align: justify;">is</em><span style="caret-color: rgb(28, 45, 63); color: #1c2d3f; font-family: Georgia, Times, "times new roman", serif; font-size: 18px; text-align: justify;"> death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.' -- <i>Brené Brown</i></span></div>
<br />
I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they're crumbling, and the question staring me in the face is <i>what is it that you're going to DO with your second chance? How are you going to SERVE?</i> As I begin to re-engage with the advocacy community, I have felt a yearning for something...more. A greater impact and deeper meaning to the work I do, which, let's face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don't get me wrong. But I am exploring options for shifting the balance outward a smidge.<br />
<br />
Balance doesn't always come easily. Case in point --><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiluQYcAwE8JzNYhFvNRuCuXaI3kgbwwko9uAGvb7Yd5KGy5HxK2z22YS2-EGKDBGTvyIds2wPcFtK0NzMFvttxB9bQZjpOR0ra3f_R8rTkiAMEvg1_KoO_k06RazCd4au54Rs3e2FJnI3u/s1600/fullsizeoutput_58cd.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiluQYcAwE8JzNYhFvNRuCuXaI3kgbwwko9uAGvb7Yd5KGy5HxK2z22YS2-EGKDBGTvyIds2wPcFtK0NzMFvttxB9bQZjpOR0ra3f_R8rTkiAMEvg1_KoO_k06RazCd4au54Rs3e2FJnI3u/s640/fullsizeoutput_58cd.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I can dissect all I'm doing wrong here as far as form goes, but at least I'm laughing.</td></tr>
</tbody></table>
I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was <a href="https://www.boobyandthebeast.com/2019/04/im-just-here-for-endorsements.html" target="_blank">exploring EMDR</a>, a type of trauma therapy, and I promised to write about it...four months ago.<br />
<br />
The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it's time to wrap up. I keep feeling like we're just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is <i>so damn hard </i>sometimes. DM me if you know the answer to that.<br />
<br />
In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don't know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.<br />
<br />
In an effort to augment my therapy appointments, and in light of Quinn's existential concerns of late, I've been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguCYfn64ZRYrtvz8Jo9XWntt31UGukuIYPHrLai4OjOmhYYH34m4zeecFuhNdJGAUHwui6PWEWDVmW9tLdrPxMUJPuycjvakPx4FXEdU25vCeX_SQV-Kt0p6u52l6CFnf_m4TCvX8whVC4/s1600/mm%252BCzLUoSU%252B1LwJqZgsaiQ.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguCYfn64ZRYrtvz8Jo9XWntt31UGukuIYPHrLai4OjOmhYYH34m4zeecFuhNdJGAUHwui6PWEWDVmW9tLdrPxMUJPuycjvakPx4FXEdU25vCeX_SQV-Kt0p6u52l6CFnf_m4TCvX8whVC4/s640/mm%252BCzLUoSU%252B1LwJqZgsaiQ.jpg" width="480" /></a></div>
<br />
This weekend, the yoga instructor, <a href="https://www.instagram.com/yogihybrid/" target="_blank">Beau</a>, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is <i>they were both going through the same hardship</i> but neither one knew it because we don't always open up to the people around us. Then Beau talked about a <a href="https://www.instagram.com/tv/B1crLyzhdOd/?utm_source=ig_embed" target="_blank">video circulating in the CrossFit community</a> about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how <i>sharing </i>can lead to that. I've seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.<br />
<br />
Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude. I haven't talked about my mental health much here because so much of my recovery is still in process -- but then I'm realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won't be as far away as I think. If I fall, I will stand up again. You guys will help me.<br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-41799365940575178162019-08-19T07:39:00.000-07:002019-08-19T07:39:33.064-07:00Take That WinLast week, Noelle and I toured a preschool.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9EwLzfAuPgupW7ADWQJN0kA5Wha-0MptibQ9wE4Jz7c3XT0iBNHUsOPNLipP-G5j-wwo6ruUCl2lhuvRJn7cixJEvxMGZKPFw6mReSydJbM5rYQY9vuAhsVN4HJlS5wjZo0NMyw_G8pFs/s1600/fullsizeoutput_5832.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9EwLzfAuPgupW7ADWQJN0kA5Wha-0MptibQ9wE4Jz7c3XT0iBNHUsOPNLipP-G5j-wwo6ruUCl2lhuvRJn7cixJEvxMGZKPFw6mReSydJbM5rYQY9vuAhsVN4HJlS5wjZo0NMyw_G8pFs/s640/fullsizeoutput_5832.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now that Quinn's started school again, she's ready to follow.</td></tr>
</tbody></table>
I should clarify: I know this preschool well. Quinn went there three days a week for two and a half years. We still meet up regularly for Taco Tuesdays -- or lately, Brat Haus Tuesdays -- with the families we met there. The school was a magical sanctuary for Quinn (and me) when I was no longer working but still sick and lethargic from chemo.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh54tud5Jm709F6x4A_Cvb3L8Bu7vZU_54bgGOBKzwuhTEuE4-oMlxXRvr_1n7EtpdNS4ZbNlQK3Z8GBsnQdcF4pi4u6TZh9oE4F2loy8S9ou6n1BXu6j9AIC0lYSHZ7Uzt8ClJEinCnNEY/s1600/IMG_0565.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh54tud5Jm709F6x4A_Cvb3L8Bu7vZU_54bgGOBKzwuhTEuE4-oMlxXRvr_1n7EtpdNS4ZbNlQK3Z8GBsnQdcF4pi4u6TZh9oE4F2loy8S9ou6n1BXu6j9AIC0lYSHZ7Uzt8ClJEinCnNEY/s640/IMG_0565.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Four years ago yesterday -- thanks, Facebook memories</td></tr>
</tbody></table>
But I wanted to see what Noelle might think. She is almost two -- how in the name of all things holy did that happen? -- and certainly ready for more interactions with people her own size. She picked out her favorite pair of shoes for the trip -- pink cowgirl boots handed down from a friend's daughter.<br />
<br />
Walking around the school, seeing the now small-looking playground and the familiar, eclectic classrooms filled with reading nooks and wooden play kitchens, terrariums housing lizards and trays filled with dried beans, pictures of current students and their families on the walls, I stopped in my tracks more than once to catch my breath. I remembered Quinn exploring here. Outside, swinging on those little swings, climbing that upside-down colander / spider web jungle gym and how it terrified me the first time I saw it. Learning to swing on the monkey bars, discovering what happens when ice castles melt and reveal treasures frozen inside, running to jump into my arms at the end of the day, muddy and barefoot and excited with his whole body to tell me about feeding lettuce to the chickens.<br />
<br />
A full movie montage ran through my head and I choked away tears.<br />
<br />
I hadn't expected that onslaught. <a href="http://www.boobyandthebeast.com/2019/08/anxious-as-mother.html" target="_blank">As I mentioned</a>, I've been a little emotionally raw lately.<br />
<br />
Time is wild. I distinctly remember <a href="https://www.boobyandthebeast.com/2013/10/the-kissing-hand.html" target="_blank">dropping Quinn off when he was two and a half and sobbing</a> in my car afterward, then writing about how my love would always be with him, while I wondered whether he'd remember me. We ran into one of his early teachers at Target the other day, and she gave me a big hug. When we left, Quinn asked me who she was and I felt a pang in my heart that he didn't remember her. That he might not have remembered me.<br />
<br />
<h3>
Today, it has been eight years since I was diagnosed with breast cancer. </h3>
<div>
<br /></div>
And it still boggles my mind how time twists and turns and seems to fold in on itself. How I can still feel the tendrils of fear that crawled up my neck after I heard the words, "This is cancer," and I felt frozen, like time had stopped. How eight years can pass in a blink, but August in Phoenix seems to crawl and 110+ degree temps seem to hang on for eternity. How grief can come in waves -- over lost body parts, lost friends, a lost sense of security about what it means to occupy space in this world. They say time heals everything, but I'm not sure that's true.<br />
<br />
Stay with me. I don't mean to be grim.<br />
<br />
<h4>
Recently, I was talking with a friend about grief and the idea that it may always be in your life after cancer (or any other loss), but that over time, grief does not sit alone in that space. It doesn't disappear so much as move to the side to allow room for other experiences. Eventually, it is no longer the heaviest tome on the shelf.</h4>
<br />
I saw this post over the weekend and it resonates so strongly today.<br />
<br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/B1RcQvEhmpX/" data-instgrm-version="12" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: 99.375%;">
<div style="padding: 16px;">
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="align-items: center; display: flex; flex-direction: row;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;">
<br /></div>
<div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;">
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;">
</div>
</div>
</div>
<div style="padding: 19% 0;">
</div>
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;">
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"><svg height="50px" version="1.1" viewbox="0 0 60 60" width="50px" xmlns:xlink="https://www.w3.org/1999/xlink" xmlns="https://www.w3.org/2000/svg"><g fill-rule="evenodd" fill="none" stroke-width="1" stroke="none"><g fill="#000000" transform="translate(-511.000000, -20.000000)"><g><path d="M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631"></path></g></g></g></svg></a></div>
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
</a>
<div style="padding-top: 8px;">
<div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">View this post on Instagram</a></div>
</div>
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
<div style="padding: 12.5% 0;">
</div>
<div style="align-items: center; display: flex; flex-direction: row; margin-bottom: 14px;">
<div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(0px) translatey(7px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; height: 12.5px; margin-left: 2px; margin-right: 14px; transform: rotate(-45deg) translatex(3px) translatey(1px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(9px) translatey(-18px); width: 12.5px;">
</div>
</div>
<div style="margin-left: 8px;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;">
</div>
<div style="border-bottom: 2px solid transparent; border-left: 6px solid #f4f4f4; border-top: 2px solid transparent; height: 0; transform: translatex(16px) translatey(-4px) rotate(30deg); width: 0;">
</div>
</div>
<div style="margin-left: auto;">
<div style="border-right: 8px solid transparent; border-top: 8px solid #f4f4f4; transform: translatey(16px); width: 0px;">
</div>
<div style="background-color: #f4f4f4; height: 12px; transform: translatey(-4px); width: 16px;">
</div>
<div style="border-left: 8px solid transparent; border-top: 8px solid #f4f4f4; height: 0; transform: translatey(-4px) translatex(8px); width: 0;">
</div>
</div>
</div>
</a> <br />
<div style="margin: 8px 0 0 0; padding: 0 4px;">
<a href="https://www.instagram.com/p/B1RcQvEhmpX/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Take every win!! You don’t really lose when you learn ❤️</a></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
A post shared by <a href="https://www.instagram.com/mantramagazine/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Mantra Wellness Magazine</a> (@mantramagazine) on <time datetime="2019-08-17T16:54:11+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 17, 2019 at 9:54am PDT</time></div>
</div>
</blockquote>
<script async="" src="//www.instagram.com/embed.js"></script>
<br />
Eight years, and not a single day has gone by that I haven't thought of cancer. But there is room for more than just my grief now. There is room for pink cowboy boots and a little girl who has no fear of anything in this world. For new beginnings that I get to be here to witness. I'll take that win.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-GKNb41FlrAeB4KKJjWCT1pYx_btptc7P42acH5yEfRhrjWUZHp90-z_D1cIw-Rl9OQSVT8j7XALUQx_zI5QfMAY5qr9dWegfU9lkIJWOpmOvD-ocTbdgIulRSjbrJwNH68WGly8F_KUd/s1600/73EC8630-6FFF-4A1E-B171-83CFC693F90A.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-GKNb41FlrAeB4KKJjWCT1pYx_btptc7P42acH5yEfRhrjWUZHp90-z_D1cIw-Rl9OQSVT8j7XALUQx_zI5QfMAY5qr9dWegfU9lkIJWOpmOvD-ocTbdgIulRSjbrJwNH68WGly8F_KUd/s640/73EC8630-6FFF-4A1E-B171-83CFC693F90A.jpg" width="640" /></a></div>
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-13264752673785425892019-08-15T11:00:00.003-07:002019-08-28T14:12:47.163-07:00Anxious as a Mother<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
The other night, Quinn came home from a monthly dinner with his preschool friends and their families, visibly upset, tears pooling in his enormous blue eyes. I pulled him in for a hug and asked what was wrong.<br />
<br />
I’d left dinner early to get Noelle to bed, and wondered if I’d missed an incident. As soon as his head was against my chest – when did he get so tall? – his body shook in sobs. <br />
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“Oh, buddy, what is it?” I asked. <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“I just don’t want people to keep dying,” he said. <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
I racked my brain. <i>Who had died? Had we talked about death recently?</i> We’d just returned from a nine-day trip to Seattle to visit my best friend and her family. Her daughter, my 14-year-old god-daughter, was diagnosed with melanoma in May. That is a whole other post because FOURTEEN ARE YOU KIDDING ME, but two surgeries later and doctors have declared her cancer-free. So we’d talked a little about cancer -- it seems we always talk a little about cancer -- but not about death.<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbnAqOHNfd84zhofi1mmmiNaPw89VLhlBinrf2TnyEt1abqWeco3hrk0y6WoyHu0sjoWxgNDuXJCFF0aO2Txg22Zfu__gJEC43XUf6HCgu6lxHstQMK5zDRnoQgYrLUXYsBsIOS_jqm2QY/s1600/WmHhKjKeQYix3kTqMK2%252BPw.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbnAqOHNfd84zhofi1mmmiNaPw89VLhlBinrf2TnyEt1abqWeco3hrk0y6WoyHu0sjoWxgNDuXJCFF0aO2Txg22Zfu__gJEC43XUf6HCgu6lxHstQMK5zDRnoQgYrLUXYsBsIOS_jqm2QY/s640/WmHhKjKeQYix3kTqMK2%252BPw.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My big-hearted boy</td></tr>
</tbody></table>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“What brought this up?” I asked Quinn. </div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“I’ve been thinking about it since that magazine I read in Seattle,” he said.<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<i>What magazine?</i> I wondered. I still don’t know. <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
He could see I still looked puzzled. “It was a medical one about people donating their organs, and I just wish people didn’t have to die. I want them to drink from the cup in Indiana Jones.” <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“Remind me what happened in Indiana Jones?” I said. I’d been chatting with Alana on her deck for half the movie, watching the late summer sunset while he’d watched the movie with his cousins. <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqwfPRQ5Ftt0Om_3GlOprk8s5OqQeDZEHllqOdM87zMXJlLzJKQnlRivdO2Fn0YfWYiqdNpMA1g9mRre2nrdsmjvBChUxBODnd_CwdcMx0oYamXkiWLYsxpdqaEllvXGEaXzJfYZuJj_1m/s1600/hgu3Q0vYSASYsAqrfmkCzw.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqwfPRQ5Ftt0Om_3GlOprk8s5OqQeDZEHllqOdM87zMXJlLzJKQnlRivdO2Fn0YfWYiqdNpMA1g9mRre2nrdsmjvBChUxBODnd_CwdcMx0oYamXkiWLYsxpdqaEllvXGEaXzJfYZuJj_1m/s640/hgu3Q0vYSASYsAqrfmkCzw.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Movie night</td></tr>
</tbody></table>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“There are several cups, and lots of them are deadly poison, but one is a potion that lets you live forever," he explained, his eyes lighting up. "Why can’t we find that and give it to everyone we know, and the people we don’t know, too, so no one else has to die?”<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“I don’t know, bud,” I said. “We haven’t figured out how to do that, yet. But hopefully it’s not something we need to worry about for a long, long time," I tried to put an optimistic spin on it, even as I wondered whether I caused this. <i>Is it because he sees me upset about losing friends to cancer? Is it because I had cancer, and his grandpa died of cancer before he was born? Is it because I have other anxieties and fears I'm working through as we speak? Is it just a normal age-appropriate fear that has nothing to do with me? </i><o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
And then he surprised me. “I wish I could talk to God about it,” he said.<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
We are not a particularly religious family. To put it lightly. Chris and I were both raised Catholic, but have stepped away from the church – and any organized religion, really – at different points in our lives. My leaving came more recently, a disillusionment after my cancer diagnosis that I haven't quite figured out how to reconcile.<br />
<br />
I don't think I got better because I prayed harder, <i>but</i> I still value the power of prayer. I also respect that <i>millions</i> of people find solace in their churches and church communities. If my son needed this, I would support him.<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br />
In parenting, I sometimes have to observe silently and allow my kids to discover their own particular beliefs about how the world works. My job is to support them in a safe, loving, accepting environment as they make sense of this universe in their developing brains. </div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
So I responded, “Well, you can talk to God, if you want."<br />
<br />
"I can?" he asked, like I'd just shown him how to time travel.<br />
<br />
"Of course," I answered. "He may not answer back, but we can talk to him. Would that help, do you think? Should we pray?”<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“Mmmhmmm,” he answered, and suddenly he seemed so much younger to me than the big kid who just started third grade. </div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM8jdn7PqMiw0Na4efl9qo-OW1DuVKq9h-qYa_5YqRMVk3mqJEbMWYzhXbVi7w6AUNxPcCY4ldPGqc5A50xzYHBD0xVwtm9pB0XUX1R5wXay4ia0Fpn600W47XSHK92xdNwAzNyYfr8Eb6/s1600/fullsizeoutput_582d.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM8jdn7PqMiw0Na4efl9qo-OW1DuVKq9h-qYa_5YqRMVk3mqJEbMWYzhXbVi7w6AUNxPcCY4ldPGqc5A50xzYHBD0xVwtm9pB0XUX1R5wXay4ia0Fpn600W47XSHK92xdNwAzNyYfr8Eb6/s640/fullsizeoutput_582d.jpeg" width="480" /></a></div>
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<div class="MsoNormal" style="margin: 0in 0in 0.0001pt;">
<i>Of course he needs something external to give him hope and promise that all his worries might be okay</i>, I thought. I don't always have those skills as an adult, and I go to intense therapy every other week. </div>
<div class="MsoNormal" style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0.0001pt;">
I tried to remember how to pray. </div>
</div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0.0001pt;">
<div style="font-family: calibri;">
<i>Now I lay me down to sleep</i>. No, too morbid. I asked Chris if he could remember the non-terrifying version of that one. “Nope, that’s all I knew,” he said. </div>
<div style="font-family: calibri;">
<br /></div>
<div style="font-family: calibri;">
Ok, The Lord’s Prayer, then. “I used to start with something like this,” I said to Quinn, “something I knew by heart and could repeat every night.” And we went through it, line by line, a matter of rote memorization to me, unfamiliar to him. We finished and he asked a lot of questions about forgiving trespasses and the meaning of temptation.</div>
<div style="font-family: calibri;">
<i><br /></i></div>
<i style="font-family: calibri;">Am I doing my kids a great disservice by not taking them to church? Why is being an adult so tough?</i></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
On Father’s Day, I’d taken both kids to a Mormon Church service. Chris was in Tanzania, and Quinn had requested to go to church where a couple of his friends go. Arrangements were made, we dressed up in our Sunday finest, and listened to the service about a father’s love for his family. Quinn’s friend’s dad gave the sermon, and teared up as he spoke about his dad always being ready to play ball with him, even when he was still in his work clothes and it was still 100 degrees outside. He’d roll up his sleeves and they’d head to the backyard. Such a simple act of love. I thought of all the ways dads show their love, of my own dad, and I wondered if Quinn was absorbing this or just happy to be sitting with his friends eating peanut M&Ms. </div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
Back to our praying. I recommended that he start with something easy to remember, and then go through what he’s grateful for. “It can be really helpful to think of all the things you’re thankful for. It always makes me feel better,” I explained.<br />
<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ3L2qyVxfWncBJJKvnjoH1GtH6l9MzXNczkedH60SoHkIxnslvbSA_J2HEvY9RjJLt2CKR73qw8C7K9eBo0Uv38Fmufg4xZo6rPGLcCtdTyvyDAbjXbQ_8mgUA6uSU53LHknZidCH2sXe/s1600/fullsizeoutput_56d1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ3L2qyVxfWncBJJKvnjoH1GtH6l9MzXNczkedH60SoHkIxnslvbSA_J2HEvY9RjJLt2CKR73qw8C7K9eBo0Uv38Fmufg4xZo6rPGLcCtdTyvyDAbjXbQ_8mgUA6uSU53LHknZidCH2sXe/s640/fullsizeoutput_56d1.jpeg" width="640" /></a></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“Everything,” he started. Oh, this boy. My heart. His enormous one. “I’m grateful for my family and friends, for Noelle, for food, our house, clothes, school…”</div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“For your powerful brain that lets you learn,” I added. “I’m thankful for you,” I said. “And my health.” I was holding him, lying next to him on his bed, our heads resting on stuffed animals.<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“I’m thankful for our cars, for our pets…” <o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“Yep,” I said. “And then from there, you may want to ask God about what it is that’s bothering you, or what it is you want. When I was little, I would ask God to protect my family, keep soldiers safe and bring them home, make sure children around the world have food, that kind of thing.”<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
“But what about why we came in here?” he asked. “I want to ask God to stop people from dying.”<o:p></o:p></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="font-family: Calibri; margin: 0in 0in 0.0001pt;">
Oy.<o:p></o:p><br />
<br />
Our conversations about this have continued for several days now. We've talked about how to cope with our fears, even when we know they won't go away completely. How to use deep breaths and meditation to make the tightness in our chests feel less constricting. We've talked about how I go to therapy, and why that helps.<br />
<br />
About how I try to give back to my community in the cancer world to honor those who have died. How Chris aims to be a good dad to keep the memory of his parents alive.<br />
<br />
We've talked about how everyone dies, so that what's important is making this life count, and remembering that we are here today.<br />
<br />
I've promised him that it is always worth it to love so big, even if it means occasionally losing big, too. To not let his fear shut down his willingness to open his heart.<br />
<br />
We've talked about the importance of movement and laughter and, yes, prayer. We've journaled together, written a short story about overcoming fears and finding courage, and have tried dance parties in our kitchen.<br />
<br />
But he is just like me in this way. We feel deeply. His empathy knows no limits, as far as I can tell. I only hope we can work through his anxiety a little earlier in life than I started figuring out how to approach mine.<br />
<br />
Oof, parenting is exhausting and all-consuming sometimes. (All the time.) AND I HAVEN'T EVEN MENTIONED THE TODDLER.</div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-22005487327824489592019-06-14T07:22:00.002-07:002019-06-14T07:22:46.939-07:00On Men's Health for Father's Day<div style="font-stretch: normal; line-height: normal;">
<span style="font-family: inherit;">June is Men’s Health Month, and this week marks <a href="https://www.menshealthmonth.org/" target="_blank">Men’s Health Week</a>, the purpose of which “is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. </span><span style="font-family: inherit;">This week gives health care providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury.”</span><span style="font-family: inherit;"> </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I posted earlier this week on Instagram about my three brothers, and how much the men (and one blue-eyed boy) in my life mean to me. Are you talking to the men in your life about their health? If not, here's a gentle nudge.</span><br />
<div style="text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
</div>
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/Byl9JKDAsV5/" data-instgrm-version="12" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: 99.375%;">
<div style="padding: 16px;">
<a href="https://www.instagram.com/p/Byl9JKDAsV5/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="align-items: center; display: flex; flex-direction: row;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;">
</div>
<div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;">
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;">
</div>
</div>
</div>
<div style="padding: 19% 0;">
</div>
<a href="https://www.instagram.com/p/Byl9JKDAsV5/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;">
<a href="https://www.instagram.com/p/Byl9JKDAsV5/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"><svg height="50px" version="1.1" viewbox="0 0 60 60" width="50px" xmlns:xlink="https://www.w3.org/1999/xlink" xmlns="https://www.w3.org/2000/svg"><g fill-rule="evenodd" fill="none" stroke-width="1" stroke="none"><g fill="#000000" transform="translate(-511.000000, -20.000000)"><g><path d="M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631"></path></g></g></g></svg></a></div>
<a href="https://www.instagram.com/p/Byl9JKDAsV5/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
<div style="padding-top: 8px;">
<div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">
View this post on Instagram</div>
</div>
<div style="padding: 12.5% 0;">
</div>
<div style="align-items: center; display: flex; flex-direction: row; margin-bottom: 14px;">
<div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(0px) translatey(7px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; height: 12.5px; margin-left: 2px; margin-right: 14px; transform: rotate(-45deg) translatex(3px) translatey(1px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(9px) translatey(-18px); width: 12.5px;">
</div>
</div>
<div style="margin-left: 8px;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;">
</div>
<div style="border-bottom: 2px solid transparent; border-left: 6px solid #f4f4f4; border-top: 2px solid transparent; height: 0; transform: translatex(16px) translatey(-4px) rotate(30deg); width: 0;">
</div>
</div>
<div style="margin-left: auto;">
<div style="border-right: 8px solid transparent; border-top: 8px solid #f4f4f4; transform: translatey(16px); width: 0px;">
</div>
<div style="background-color: #f4f4f4; height: 12px; transform: translatey(-4px); width: 16px;">
</div>
<div style="border-left: 8px solid transparent; border-top: 8px solid #f4f4f4; height: 0; transform: translatey(-4px) translatex(8px); width: 0;">
</div>
</div>
</div>
</a> <br />
<div style="margin: 8px 0px 0px; padding: 0px 4px; text-align: left;">
<a href="https://www.instagram.com/p/Byl9JKDAsV5/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Here I am with my three brothers (and my mom), in late 2007 at my youngest brother’s wedding. ❤️ The men in my life are super important to me, and it started with these generous, loving, stand-up guys (and my dad, who I’ll get to later this week). I’ve talked a lot about my health over the years, but this Men’s Health Month, I thought I’d remind you to talk to the amazing men in your life about THEIR health and remind them to seek help when something doesn’t feel right. Stay healthy, my brothers. 💙#menshealthmonth #menshealthweek #brothers #onlygirl #wedding</a></div>
<div style="color: #c9c8cd; font-family: arial, sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0px; margin-top: 8px; overflow: hidden; padding: 8px 0px 7px; text-align: left; text-overflow: ellipsis; white-space: nowrap;">
A post shared by <a href="https://www.instagram.com/jencampisano/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Jen Campisano</a> (@jencampisano) on <time datetime="2019-06-12T02:32:08+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Jun 11, 2019 at 7:32pm PDT</time></div>
</div>
</blockquote>
<script async="" src="//www.instagram.com/embed.js"></script>
<br />
<div style="font-stretch: normal; line-height: normal;">
<span style="font-family: inherit;">So given the theme of this month/week, it seems fitting both that this week culminates in Father's Day and that today is my dad's LAST radiation treatment for prostate cancer. Whooot-whoot! <i>Dad, I </i></span><i>know you're exhausted in a full-body, cement-in-your-bones kind of way, but you did it. You've crossed this finish line, and I'm so thankful. I'm particularly appreciative that you see your doctors for regular check-ups and then <u>follow through</u> when something isn't right. </i></div>
<div style="font-stretch: normal; line-height: normal; min-height: 14px;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both;">
</div>
<div style="font-stretch: normal; line-height: normal;">
<span style="font-family: inherit;">To back up a bit, in mid-March, I got a call from my dad. “I have news. I have prostate cancer,” he told me. This isn't the first </span>time<span style="font-family: inherit;"> my dad has called to tell me <a href="http://www.boobyandthebeast.com/2012/11/shaken.html" target="_blank">he has cancer</a>. And I am conditioned to think worst-case-scenario when I hear the word </span><i style="font-family: inherit;">cancer</i><span style="font-family: inherit;">,</span><i style="font-family: inherit;"> </i><span style="font-family: inherit;">but he assured me his doctors considered this very treatable. Still. What do they know? I am a skeptic about medical certainty nowadays.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">After losing Chris's dad to pancreatic cancer in 2009, I also knew prostate cancer has a better prognosis. But still. Cancer is cancer and fear is fear.</span></div>
<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibhYpH16SY5BsokiiiC5rSWgztd1qfJgrVmuloJ9T8NhAHlHMHZzdTb9UgRceq5BnO5bs-Fy0amt1tKVEDFru6A7MI5rVZg3q86gX4lpiPeROcz9ggJq4I-g9Dy-f-LnP0B1PGP0AHayf9/s1600/IMG_3768.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="508" data-original-width="508" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibhYpH16SY5BsokiiiC5rSWgztd1qfJgrVmuloJ9T8NhAHlHMHZzdTb9UgRceq5BnO5bs-Fy0amt1tKVEDFru6A7MI5rVZg3q86gX4lpiPeROcz9ggJq4I-g9Dy-f-LnP0B1PGP0AHayf9/s640/IMG_3768.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Four generations, circa 2013</td></tr>
</tbody></table>
<div style="font-stretch: normal; line-height: normal;">
<span style="font-family: inherit;">In April, I went to the </span><a href="http://www.boobyandthebeast.com/2019/04/out-of-hibernation.html" style="font-family: inherit;" target="_blank">HealtheVoices</a><span style="font-family: inherit;"> conference and talked about my dad's health to a few prostate cancer survivors</span><span style="font-family: inherit;">. </span><span style="font-family: inherit;">Even if my dad wasn't fully </span>comfortable<span style="font-family: inherit;"> seeking out support from strangers, I knew these men from past </span>conferences<span style="font-family: inherit;"> and needed my own support network. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Somehow, having been through breast cancer and bared my deepest fears online already, it seems perfectly acceptable to me to talk to others about the health of my dad's prostate. Because at their core, these conversations were about <i>my fears</i> for him. <i>Would he be okay? What </i></span><i>are the chances of recurrence? Would radiation be enough? Would he need hormone replacement therapy?</i><br />
<br />
<b>And this is the beauty of connecting with others who've walked in those shoes. Of facing our fears and seeing them grow smaller as we speak. </b></div>
<div style="font-stretch: normal; line-height: normal;">
<br /></div>
<div style="font-stretch: normal; line-height: normal;">
These are the men who crushed those anxiety demons for me. <a href="https://www.cancerabcs.org/new-page-1" target="_blank">Joel Nowak</a> lives with metastatic prostate cancer and spent at least an hour walking me through what to expect, assured me that most likely this would never bother my dad again, and gave me tips to pass along to my dad to make treatment a bit easier. And <a href="https://ancan.org/team/rick-davis/" target="_blank">Rick Davis</a>, who also had prostate cancer, offered to chat with my dad (or me) anytime about our fears or concerns. On his flip phone. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKZCwykOz_OHgY0VgQX7YqHi6KdzD-tD8H5Xs6iY6OkDN7XHprKO3m4PZk2TXsWU63N7_4TJRh9LN0fwrswUs2EhV6BEa0O7vJhoYqCh0mGGPrE0wkViZ5dUW8BYeMJFtCVZnKn1LR9kP2/s1600/IMG_2107.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="604" data-original-width="483" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKZCwykOz_OHgY0VgQX7YqHi6KdzD-tD8H5Xs6iY6OkDN7XHprKO3m4PZk2TXsWU63N7_4TJRh9LN0fwrswUs2EhV6BEa0O7vJhoYqCh0mGGPrE0wkViZ5dUW8BYeMJFtCVZnKn1LR9kP2/s640/IMG_2107.JPG" width="510" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wedding day, 2008</td></tr>
</tbody></table>
My dad will most likely be okay because he took action. He saw his doctor for regular physical exams, and then didn't balk when a treatment plan was in place, as draining as it has been. In many cases, it really is that simple: visit your doctor, talk about your concerns, follow through with treatment, go on living a healthy life. So this Father's Day, how about reminding the men in your life to visit their doctors? Next step, connecting with support networks.<br />
<br />
<i>I love you, Dad. Happy Father's Day.</i><br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-65042359603432970102019-06-04T15:24:00.003-07:002019-08-28T14:09:07.696-07:00What Makes a Cancer Survivor, Anyway?They say you become a cancer survivor from the moment you are diagnosed, for as long as you are alive. If that's the case, later this summer will mark 8 years since I became a breast cancer survivor. Eight years and I <i>still </i>grapple with the term <i>survivor</i>, like I should be on a deserted island competing for a million dollars. Although I guess there are parallels between the long-running reality t.v. show and cancer, like facing unfamiliar challenges that have the potential to kill you. Learning to navigate one's way from an infusion chair to the bathroom while connected by three different tubes to a chemo pole is not the same as learning to fish for your dinner with a spear, though. I don't think.<br />
<br />
I posted this to Instagram...<br />
<br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/ByOfSLYgCrS/" data-instgrm-version="12" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: 99.375%;">
<div style="padding: 16px;">
<a href="https://www.instagram.com/p/ByOfSLYgCrS/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="align-items: center; display: flex; flex-direction: row;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;">
</div>
<div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;">
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;">
</div>
</div>
</div>
<div style="padding: 19% 0;">
</div>
<a href="https://www.instagram.com/p/ByOfSLYgCrS/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"> </a><br />
<div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;">
<a href="https://www.instagram.com/p/ByOfSLYgCrS/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank"><svg height="50px" version="1.1" viewbox="0 0 60 60" width="50px" xmlns:xlink="https://www.w3.org/1999/xlink" xmlns="https://www.w3.org/2000/svg"><g fill-rule="evenodd" fill="none" stroke-width="1" stroke="none"><g fill="#000000" transform="translate(-511.000000, -20.000000)"><g><path d="M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631"></path></g></g></g></svg></a></div>
<a href="https://www.instagram.com/p/ByOfSLYgCrS/" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
<div style="padding-top: 8px;">
<div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">
View this post on Instagram</div>
</div>
<div style="padding: 12.5% 0;">
</div>
<div style="align-items: center; display: flex; flex-direction: row; margin-bottom: 14px;">
<div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(0px) translatey(7px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; height: 12.5px; margin-left: 2px; margin-right: 14px; transform: rotate(-45deg) translatex(3px) translatey(1px); width: 12.5px;">
</div>
<div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translatex(9px) translatey(-18px); width: 12.5px;">
</div>
</div>
<div style="margin-left: 8px;">
<div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;">
</div>
<div style="border-bottom: 2px solid transparent; border-left: 6px solid #f4f4f4; border-top: 2px solid transparent; height: 0; transform: translatex(16px) translatey(-4px) rotate(30deg); width: 0;">
</div>
</div>
<div style="margin-left: auto;">
<div style="border-right: 8px solid transparent; border-top: 8px solid #f4f4f4; transform: translatey(16px); width: 0px;">
</div>
<div style="background-color: #f4f4f4; height: 12px; transform: translatey(-4px); width: 16px;">
</div>
<div style="border-left: 8px solid transparent; border-top: 8px solid #f4f4f4; height: 0; transform: translatey(-4px) translatex(8px); width: 0;">
</div>
</div>
</div>
</a> <br />
<div style="margin: 8px 0 0 0; padding: 0 4px;">
<a href="https://www.instagram.com/p/ByOfSLYgCrS/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">I never asked “Why me?” when I was diagnosed with cancer. I knew it was too random for there to be any explanation from the universe that made more sense than that. But every day since I stopped being a terminal patient and moved to the realm of people who can look at cancer in the rear view mirror, I have wondered why. Why did I survive? . . . I’m not sure I’ll ever know the full answer to that, but as one of my favorite survivors said this morning, “I want to help other cancer patients know what the other side can look like.” That, and I want others to know what questions they might ask to avoid a story quite like mine. . . . For me, surviving cancer means falling in love with myself again. It means forgiving my imperfections because they are my story. It means the possibility another life unfolding before me, my toddler chasing our dog down the hallway and around the coffee table while squealing with glee, fearless. She is teaching me to be brave again. It means I get to imagine a future. This is what it could be like. #nationalcancersurvivorsday #breastcancer #bcsm #cancersurvivor</a></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
A post shared by <a href="https://www.instagram.com/jencampisano/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Jen Campisano</a> (@jencampisano) on <time datetime="2019-06-02T23:48:41+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Jun 2, 2019 at 4:48pm PDT</time></div>
</div>
</blockquote>
<script async="" src="//www.instagram.com/embed.js"></script>
<br />
Lots of patients instead mark survivorship from the day they finish treatments. By that definition, I've been surviving cancer for just over 3 years. <b>But that definition doesn't sit well with me, as it leaves out too many who never get to finish treatment.</b> For five years, I thought I would be one of those patients who died with my disease. Was I not surviving then? In some ways, it felt like I was <i>hyper</i>-alive -- surviving in a vivid, punchy, super-saturated way -- during that period. As my friend <a href="https://emilyrgarnett.com/about/" target="_blank">Emily</a> wrote about living with metastatic breast cancer a few days ago:<br />
<span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;"><br /></span>
<span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;">I feel like I have been moving at such a frenetic pace lately because I am continually reminded that my timeline has been drastically shortened.</span><span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;"> </span><span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;">How do you fit an entire career, and an entire lifetime, into the space of “months to years”? </span><span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;">You can’t. And you don’t. No matter how hard you try.</span><br />
<span style="background-color: white; color: #666666; font-family: "open sans" , sans-serif; font-size: 18px; text-align: justify;"><br /></span>
But oh how we try. Nothing like coming face-to-face with your mortality -- and a generous dose of treatment-based steroids, too -- to shock your system and routines into high gear for a bit.<br />
<br />
And plenty of patients, mostly those I know in the metastatic community, but not exclusively, shun the term 'survivor' altogether. For them, it feels wrong to leave out those who didn't make it. The word feels too exclusive and divisive -- and celebratory, even, in the face of what is often a cruel and devastating disease. I totally respect that line of thinking.<br />
<br />
On the other hand, I also think this life <i>is</i> worth celebrating, even in the midst of a terrifying shit-storm. As my late friend <a href="https://www.lisasbook.com/" target="_blank">Lisa Bonchek Adams</a> said so wonderfully when she was facing the end of her life:<br />
<br />
<blockquote style="font-family: pollen-web; font-size: 18px; letter-spacing: -1px; margin: 0px; text-align: center;">
<div style="text-align: left;">
<span style="background-color: white; font-family: pollen-web; font-size: 18px; text-align: center;">“</span>Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” </div>
</blockquote>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggr5pwwjMjlPU7bMNQMMLm1-ZGukeQeh9FZYGTRS9lq-D8vQHQNsxXgwOnKrKB9oIJYthDmAaGaSZ0laSrAdXW5vwrd8Bf_KdX_ZceSd8elP8r3-U24ciP-3r7m_hPRFnQCJX0jF_oH8Kb/s1600/IMG_5014-2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggr5pwwjMjlPU7bMNQMMLm1-ZGukeQeh9FZYGTRS9lq-D8vQHQNsxXgwOnKrKB9oIJYthDmAaGaSZ0laSrAdXW5vwrd8Bf_KdX_ZceSd8elP8r3-U24ciP-3r7m_hPRFnQCJX0jF_oH8Kb/s640/IMG_5014-2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My bit of beauty in this world</td></tr>
</tbody></table>
Sunday was National Cancer Survivors Day. I read through dozens of posts from friends and patients. I watched most closely the posts and reactions from those I know living with mets. I always wonder how they would feel about my celebrating this life, and I worry. But something I heard recently, from Brené Brown because I'm on a kick, touched on the fact that our experiencing joy gives room for others to grieve and acknowledge that their pain is significant. That other people's pain matters <i>because</i> this life is so worthy of celebrating. I am paraphrasing greatly, so I hope I'm doing her words justice.<br />
<br />
How do you define survivorship? Does the word ring true for you, or do you turn away from it and find it divisive? Why or why not?<br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-16558870904839902772019-05-20T15:03:00.001-07:002019-05-20T15:03:13.484-07:00Put Your Own Oxygen Mask on FirstQuinn and I spend half an hour or so most nights reading side-by-side in his bed before I tuck him in. He recently suggested I start reading some of his books, and then he'll read them when I'm done. We have our own two-person book club and so far it is one of my favorite things that has happened to me as a parent. Right now, I'm a few chapters into book two of the <i>Book Scavenger </i>series by Jennifer Chambliss Bertman. The series is about a couple of kids who crack literary puzzles and codes to find hidden books and also solve bigger mysteries. The second book, the one I'm on, is called <i>The Unbreakable Code</i>.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE7Ss7o72gfkfNcrYAqI3TfvD2AGzwlBg5S8OV9OIekiSA_ZUIwhYeynqoY1QpQx-zf0WdOggLapBu6bR5PQ5PK9-JK708P0d4d9pyt79ICKOd25wrJhODjKKj41kqz5YxK1ctZdnzRvz_/s1600/21077517_10213810755801387_6042476055284675317_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="900" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE7Ss7o72gfkfNcrYAqI3TfvD2AGzwlBg5S8OV9OIekiSA_ZUIwhYeynqoY1QpQx-zf0WdOggLapBu6bR5PQ5PK9-JK708P0d4d9pyt79ICKOd25wrJhODjKKj41kqz5YxK1ctZdnzRvz_/s640/21077517_10213810755801387_6042476055284675317_n.jpg" width="640" /></a></div>
<br />
I'm one of those people who's always got a handful of books on my nightstand, and right now I'm also reading <i>Creative Trespassing: How to Put the Spark and Joy Back into Your Work and Life </i>by Tania Katan, a local creative genius and also breast cancer survivor. I met Tania through my friend Sandi a couple of years ago at a storytelling event Tania was emceeing. And listening to her engage the crowd with her enthusiasm for story itself, I decided then and there I wanted to be her when I grow up. When her book came out a few months ago, I grabbed a copy, but it has taken me a little bit to dive into it because time does not grow on trees. Or something like that.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh466JoOmBk8FKhFhgVGkrOB3mAPyijc8zg5Ta3yBi3P0Nll7faC7gT5GRzLjRwSGqiboOkkuyIWveZG3ibl7APDDxmFPZ9pgOUX7Lq5fenwNa_7XatL7EEG29yvmPwkVflwVMMr7y9Z09M/s1600/IMG_4493.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh466JoOmBk8FKhFhgVGkrOB3mAPyijc8zg5Ta3yBi3P0Nll7faC7gT5GRzLjRwSGqiboOkkuyIWveZG3ibl7APDDxmFPZ9pgOUX7Lq5fenwNa_7XatL7EEG29yvmPwkVflwVMMr7y9Z09M/s640/IMG_4493.HEIC" width="640" /></a></div>
<br />
<br />
As I was reading <i>Creative Trespassing</i> the other night and highlighting and drawing stars next to passages left and right, including, "The moment you choose to let the world see the real you -- messy, imperfect, warts and all -- is the moment you choose to shine too."<br />
<br />
<h4>
A little further down the page, Tania writes, "And then I look on my refrigerator to see the poem I placed there in case of an existential emergency, "The Summer Day" by Mary Oliver. The last line of poem is "Tell me, what is it you plan to do with your one wild and precious life?" Oh, it gets me every time. Because this is it, kids. I don't mean to get all life-or-deathsy here, but regardless of what your beliefs are about death or life or life after death, why <i>would </i>you want to squander a single moment of your one wild and precious life?"</h4>
<div>
<br /></div>
I love that passage, and I have long loved that line by Mary Oliver. But here's where it got super weird for me, you guys. The very NEXT night, as I was reading next to Quinn, the kids in the <i>Unbreakable Code</i> book met with a librarian who has a tattoo sleeve on her arm. One of the tattoos is of an airplane carrying "a banner that read <i>Tell me, what is it you plan to do with your one wild and precious life?</i>" Which gave me goosebumps because what are the chances? Sometimes the universe bonks you on the head with these signs, and if I've learned anything, it's to pay attention to the neon signs in your life -- and also lumps and bumps that aren't typical.<br />
<br />
And these signs I'm getting lately, I believe, tie into a conversation I was having with a survivor friend recently about self-care versus selfishness.<br />
<br />
In a post-cancer world, we survivors are acutely aware of the value of time and the resources that go into how we choose to spend it. For many of us, side effects linger long after treatment ends. Chemo brain is a very real hindrance in our day-to-day lives. Depending on how far out we are from surgeries or other treatments, we may have physical limitations like the extreme tightness in my right pectoral muscle. Many of us struggle with anxiety and PTSD. Despite all of this, we show up in this life because we have seen the terrifying possibility of an early end to it, up close and personal.<br />
<br />
We show up by paying attention to our own needs first. Which might sound backwards to some, but what we've learned is that our health is everything. That without it, we are in hospital beds or on chemo chairs or recovering on the couch, and it's much harder to show up as our best selves when we're not well. We know that we can't take care of our families, or advocate for other patients, or live the fullest out of our one wild and precious life if we don't first take care of ourselves. It just doesn't work that way.<br />
<br />
This is why flight attendants tell parents to put their own oxygen masks on first. On a plane that has lost cabin pressure, you can't help your child breathe if you aren't breathing.<br />
<br />
It's why the spoon theory about how chronically ill patients choose to spend their spoons each day went viral, because others could concretely visualize why we are so frugal with how we spend our energy.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlIjibeZDQ1lss0DRfrQcbP1G1NbXKPbaBgsaN2TN0AXDBO0PPeyzsQvl-pEZla1syE2MaUK8qi5zZmh-Woal75xumDyVYaGSxngZstEday0EtE-2EDunxTeeZySnm_mrn1EI2RucxIvwg/s1600/fullsizeoutput_5237.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1102" data-original-width="735" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlIjibeZDQ1lss0DRfrQcbP1G1NbXKPbaBgsaN2TN0AXDBO0PPeyzsQvl-pEZla1syE2MaUK8qi5zZmh-Woal75xumDyVYaGSxngZstEday0EtE-2EDunxTeeZySnm_mrn1EI2RucxIvwg/s640/fullsizeoutput_5237.jpeg" width="426" /></a></div>
<br />
And because I'm on a Brenè Brown kick lately, it's why this quote makes so much sense: "In a society that says 'Put yourself last,' self-love and self-acceptance are almost revolutionary." If we are to show up for this one wild and precious life, we have to engage in self-care, as revolutionary as that might sound to some. So go to the gym, eat the vegetables, have a mom's night slumber party away from your kids, see your therapist, get the massage, walk more, cuddle with your dog, read with your child, do something creative. I am not just talking to the cancer survivors.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-9137543049104547822019-05-09T14:36:00.002-07:002019-05-09T14:36:24.582-07:00Construction Can Take EonsDriving Quinn to school yesterday, we were listening to The Absolutely Mindy Show on <a href="https://www.siriusxm.com/kidsplacelive" target="_blank">Kids' Place Live</a>. She told a story about an eagle in Kodiak, Alaska, that got ahold of a piece of halibut someone had thrown out because it was freezer-burned. A second eagle then got wind of the feast eagle #1 was having, and a fight for the prize broke out in the air.<br />
<br />
I have seen almost this exact thing happen a few years ago visiting my home state of Washington. A heron caught a fish and almost immediately, an eagle came into attack and steal the catch. It is fascinating to watch these majestic creatures that symbolize our country swoop in to try to take what is rightfully someone else's. Metaphors abound.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjii4QqCfz39kE8exKU6bIOhIPiZkayeBKiV1_-iXArtBmVf6gcs-YqdPWT-6ZQKgq_0DrZP1jw1bCragznNrh-iuqp0zMN4XdsX9RbSdTkoIwrJjnhmeVSWDiEAeDMbpuueY6xjbFDOeUG/s1600/Campisano_highres-24.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1068" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjii4QqCfz39kE8exKU6bIOhIPiZkayeBKiV1_-iXArtBmVf6gcs-YqdPWT-6ZQKgq_0DrZP1jw1bCragznNrh-iuqp0zMN4XdsX9RbSdTkoIwrJjnhmeVSWDiEAeDMbpuueY6xjbFDOeUG/s640/Campisano_highres-24.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 years ago in the PNW - photo by my friend Lara Agnew </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEfiq-pNG01CKIUKz3nOeY1-s7DSMgpsodgP-dSUfrdpmLCOCwzPuPIVXvYNCD5jU8hxwCBcnt8uD00O4EmeqCF1viFsubYZH9G70OzlEW8-SbGxUYPJKveDVm10r38IXP4OnRpWUKCSz1/s1600/IMG_1391.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEfiq-pNG01CKIUKz3nOeY1-s7DSMgpsodgP-dSUfrdpmLCOCwzPuPIVXvYNCD5jU8hxwCBcnt8uD00O4EmeqCF1viFsubYZH9G70OzlEW8-SbGxUYPJKveDVm10r38IXP4OnRpWUKCSz1/s640/IMG_1391.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Where we saw the eagle / heron fight</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
But Mindy was talking about these two eagles, and how suddenly, in the chaos of their dogfight (er, bird-fight), one went <a href="https://abc3340.com/news/offbeat/eagle-with-8-foot-wing-span-crashes-into-alaska-home" target="_blank">CRASHING THROUGH SOMEONE'S WINDOW</a> and landed in her house. The homeowner, Stacy Studebaker, said, "<span style="background-color: white; caret-color: rgb(18, 18, 18); color: #121212; font-family: "Open Sans"; font-size: 16px;">"It was so unbelievably loud. My first thought was: I thought an atomic bomb had dropped and the windows were blowing out." Ironically, Studebaker founded the local chapter of the Audubon Society. </span><br />
<span style="caret-color: rgb(18, 18, 18); color: #121212; font-family: "Open Sans"; font-size: 16px;"><br /></span>
<span style="color: #121212; font-family: Open Sans;">Mindy went on to describe the mayhem that the eagle caused with its EIGHT-FOOT WINGSPAN and Quinn's eyes went wide as we both imagined the chaos. "That's like the size of a dad, lying down, plus one extra foot on either side," Mindy explained, and we laughed at the thought of a bird that giant in our house. The woman, Mrs. Studebaker, and a neighbor tried to get the eagle outside, </span><br />
<span style="color: #121212; font-family: Open Sans;"><br /></span>
<i>"But it freaked out again and flew into the dining room and there was just stuff flying everywhere — broken glassware, art supplies, you name it. It was still trying to get out through the windows in the dining room," Studebaker said.</i><br />
<i><br />Eventually they maneuvered behind the bird and were able to get it out of the house, which took her and her husband hours to clean up.</i><br />
<i><br />"If you could have seen the house, it really looked like a bomb had gone off," she said. "There was glass that had been thrown into a bookcase that was 25 feet (7.6 meters) away and all over the furniture. The carpet was sparkling with glass."</i><br />
<i><br />She added: "It was like having a wrecking ball coming through your window — with wings!"</i><br />
<i><br /></i>
And it was funny, and we were laugh-crying in amazement as I dropped Quinn off at school.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrBJRhoGKgaIA3-nG-HZHD3W-H24TTtGxZh-U7w2VvxOqAXZiCL5Xv_1X76r10tIP26hOqC4HIaiueQuoZGzNXGNPgMgs9SfP8aoaer4gYiqxKxWiyAa4PrhZwIZ_rzGnwo35jsngZFvlg/s1600/IMG_3618.HEIC" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrBJRhoGKgaIA3-nG-HZHD3W-H24TTtGxZh-U7w2VvxOqAXZiCL5Xv_1X76r10tIP26hOqC4HIaiueQuoZGzNXGNPgMgs9SfP8aoaer4gYiqxKxWiyAa4PrhZwIZ_rzGnwo35jsngZFvlg/s640/IMG_3618.HEIC" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Quinn's wingspan is not quite that of an eagle's</td></tr>
</tbody></table>
But later, it got me thinking about destruction and how quickly devastation can set in. <a href="http://www.boobyandthebeast.com/2019/04/out-of-hibernation.html" target="_blank">I mentioned I've been seeing a massage therapist</a> for my neck / shoulder. Last visit, she asked how I was recovering from the car accident. "Honestly? I feel like I take two steps forward, one step back," I said. I was talking about my shoulder, but it could also apply to processing my cancer recovery.<br />
<br />
"Construction can take eons," she said.<br />
<br />
"<i>What?</i>" I thought, lying with my face smushed into the cradle at the end of the massage table. Conversations are weird when you can't see the other person's face and their knuckles are digging into the muscles under your shoulder blade.<br />
<br />
"Destruction only takes a moment, but for the body to recover can take <i>years</i>," she said. This woman is so much more than my massage therapist. She is quickly becoming my secondary <i>therapy</i> therapist.<br />
<br />
Years, you guys. One foot in front of the other. Until one day you wake up and the overwhelming, repeating mantra in your head isn't about when the other shoe is going to drop. Suddenly, it is simply gratitude that you can see the other side, that you get to spread your wings and live this beautiful life. I am still somewhere in the in-between, but I am moving forward and taking steps (19,365 a day at Disney a couple of weeks ago).<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQeZ4vLJ-2JzK29EnM3lUq5RKjKu2hP-d23CcIP5NjVlhzDlMX-Whabl0Lw0pDBgLIE3PhJXSxAjMO-1jTXFCCUuOTH1gnVYTGD3jAXX2X70_r5E8A_DnckXIO1sXmzJ2e16gTeA1mxMSO/s1600/IMG_4213.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQeZ4vLJ-2JzK29EnM3lUq5RKjKu2hP-d23CcIP5NjVlhzDlMX-Whabl0Lw0pDBgLIE3PhJXSxAjMO-1jTXFCCUuOTH1gnVYTGD3jAXX2X70_r5E8A_DnckXIO1sXmzJ2e16gTeA1mxMSO/s640/IMG_4213.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Acting like movie stars at Disney with my favorite boy</td></tr>
</tbody></table>
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-90386583605763109462019-04-30T14:49:00.000-07:002019-04-30T14:59:02.976-07:00I'm Just Here for the EndorsementsWhat a warm welcome back to this space! Thank you guys for being here while I dust things off and clear out the cobwebs and find my voice again. Why did I go silent for so long? Didn't the metastatic breast cancer community still need advocates?<br />
<br />
<h4>
Am I just back because I want your attention (not to mention the bazillions of dollars in endorsements)?</h4>
<br />
All joking aside, I do want your attention. God knows cancer still needs advocates, especially in the metastatic community. But I also want to shed light on what it's like to survive what I <i>thought</i> was metastatic cancer -- even the ugly parts. Especially the ugly parts, so maybe they can be less ugly for those who come after me. (Because I would fucking love it if all my mets friends suddenly found out they didn't actually have tumors breaking their ribs, filling their lungs, invading their brains, that instead they, too, had an autoimmune disorder.)<br />
<br />
I want to talk about the dark parts of facing a major identity change, even if that change is ultimately a positive one. <i>Yay, no cancer! Go on your merry way, we've got other patients to treat! They include your friends, who will continue to die. You should be so HAPPY!</i> I digress, but maybe in talking about it, the darkness can be less jarring and raw going forward.<br />
<br />
For so long, I wasn't ready for that amount of processing here, even if I've <a href="https://www.boobyandthebeast.com/2018/04/go-home-anxiety-youre-drunk.html" target="_blank">alluded</a> to <a href="https://www.boobyandthebeast.com/2018/06/a-nightmare.html" target="_blank">some struggles</a>. I wanted to wait until I'd been in therapy long enough not to just dump everything out here without a filter. You guys deserve a little bit of a filter.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX80XfRNv0I4S78dLXLyZq8uEhcZIUhrNTgA1BRoJfQ6lu6ej71Vb3RFYaBcpeKkfbCWZtPB-2Q0mN8szuH6nnn7GtqLqzFA3osX6TvxpV28zhpRA7kCcrrflXUJrKjuVg29k2zd1gzkv6/s1600/IMG_2902.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1280" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX80XfRNv0I4S78dLXLyZq8uEhcZIUhrNTgA1BRoJfQ6lu6ej71Vb3RFYaBcpeKkfbCWZtPB-2Q0mN8szuH6nnn7GtqLqzFA3osX6TvxpV28zhpRA7kCcrrflXUJrKjuVg29k2zd1gzkv6/s640/IMG_2902.JPG" width="512" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Scan-day, December 2018</td></tr>
</tbody></table>
Also, I haven't exactly known what to say. Should I write that this past year has run me ragged and bowled me over with a strange mix of joy and sorrow all at once? Babies are amazing, exhausting little creatures. Then, seemingly overnight, they turn into toddlers who are bonkers and feisty, and ours also has the gift of fearlessness. She runs and climbs and tackles our cat or practices for the World Rugby Championships twelve hours a day until I think I might pass out from the effort of keeping up with her. In the middle of it she naps, and I am addicted to the sweaty curls at the back of her head when she wakes up. Wash, rinse, repeat.<br />
<br />
Should I mention that more than once, I've broken down in sobs while rocking Noelle to sleep because I am immediately transported back to the fear I felt when Quinn was her age? That my brain frequently tells me I may only have a few days/weeks/months left with my children, probably because I spent 5 years thinking my time was severely limited? Is that normal? Are the nightmares?<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Jaw4TXNniWcZmc-Q3xMOMQ3N69bt38xm6Rsr5rUSSmkquEJ164uOOWjkqndLZPCeJSS559FCE5C2rbYA7k9MRhR_hyphenhyphenj3jJPKmpVpku_oJIJwvHkJMDAq-Nbj1eTC6HmmVEcqTBE_MpOG/s1600/IMG_3636.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="768" data-original-width="1024" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Jaw4TXNniWcZmc-Q3xMOMQ3N69bt38xm6Rsr5rUSSmkquEJ164uOOWjkqndLZPCeJSS559FCE5C2rbYA7k9MRhR_hyphenhyphenj3jJPKmpVpku_oJIJwvHkJMDAq-Nbj1eTC6HmmVEcqTBE_MpOG/s640/IMG_3636.JPG" width="640" /></a><br />
<br />
And I'll pause to reflect on what I know is true: I am very lucky. Not only were my mets not actually tumor cells, but then my body grew something surprising and miraculous and beautiful, even after the assault of chemotherapy on my reproductive system. While I hope that part of my story -- my motherhood story -- offers a bit of hope and resilience about what our bodies are capable of, I know it will also be a painful reminder of what can't be for many of you. And I don't want you coming here to feel triggered. Nobody needs that, and I get it if you can't stick around.<br />
<br />
My therapist believes I have PTSD, which I thought was only for soldiers who'd been in war. I don't even <i>like </i>the battle metaphors associated with cancer, but apparently the mental health outcome can be similar. I am working on new therapies to help, and mindfulness practices to lessen the severity and frequency of panic attacks. I am exercising daily, but like <a href="https://aballsysenseoftumor.com/" target="_blank">a good friend</a> said recently, I can't spend all my time in the gym. I may need other tools. I'm not ruling out medication. I met with a new therapist who is recommending something called <a href="https://www.emdr.com/what-is-emdr/" target="_blank">EMDR</a>, and I'll write more about that soon.<br />
<br />
Should I tell you that I've had to step away from social media upon realizing some people in my circle are no longer closeted bigots, and so I have occasionally missed the news that a friend has gone into hospice, or worse? Not to mention <a href="https://blog.youngsurvival.org/statement/" target="_blank">the woman I thought was a friend who seemingly faked having metastatic cancer</a> and has rocked this community? That I still feel intensely and excruciatingly guilty that I <strike>appear to have survived</strike> <i>am surviving</i> cancer?<br />
<br />
Do you want to know that <a href="https://www.improvediagnosis.org/boardlist/" target="_blank">I joined a board</a> to lend my patient voice to improving diagnostic accuracy because medical mistakes kill as many people as breast cancer each year, and my story has a rare, healthier-than-I-started ending?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47-lcbcEhsn0X80CRqSjB5rPRpeQmceZgvnWrb7hexhomJ5kEkwt3oCwRSz_lx2mAg9QKesyka5mau2BNbVc92Neauah4gaXyDMJKgQclCVTj5UVmXs_ibH8qhZYUzQzkon91snoKF1pR/s1600/IMG_1945.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47-lcbcEhsn0X80CRqSjB5rPRpeQmceZgvnWrb7hexhomJ5kEkwt3oCwRSz_lx2mAg9QKesyka5mau2BNbVc92Neauah4gaXyDMJKgQclCVTj5UVmXs_ibH8qhZYUzQzkon91snoKF1pR/s640/IMG_1945.JPG" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
All of the above?<br />
<br />
I do feel like I owe it to myself and my twelve loyal readers (hi, mom!) to write about the emotional fallout of learning of my misdiagnosis, becoming unexpectedly pregnant, and then parenting from a completely different perspective, albeit with somehow just as much anxiety.<br />
<br />
<h4>
It isn't surprising that enormous changes in identity can wreak havoc on one's mental health.</h4>
<br />
I also feel like I owe it to the MBC community to continue to advocate on behalf of the women and men who are still dying at an alarming rate. At <a href="https://www.boobyandthebeast.com/2019/04/out-of-hibernation.html" target="_blank">HealtheVoices</a> a few weeks ago, a woman said we need to find our tribe, and all I could think was, "What if your tribe keeps dying?" I looked at the ceiling for awhile to help me blink back tears. I miss my friends.<br />
<br />
So I'll be ramping up my advocacy work this summer, and I hope to share my story in more ways, across more platforms, as I heal from the trauma of my misdiagnosis and rediscover myself. I've missed you guys.<br />
<br />
<img alt="" class="attachment-full size-full wp-post-image" height="266" sizes="(max-width: 1264px) 100vw, 1264px" src="https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story..jpg" srcset="https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story..jpg 1264w, https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story.-300x125.jpg 300w, https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story.-768x320.jpg 768w, https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story.-1024x426.jpg 1024w, https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story.-174x72.jpg 174w, https://brenebrown.com/wp-content/uploads/2015/06/Own-our-history.-Change-the-story.-354x147.jpg 354w" width="640" />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-64056131272584444512019-04-18T23:15:00.002-07:002019-04-18T23:15:48.752-07:00Out of HibernationAhem.<br />
<br />
This blog, as my friend <a href="http://www.bonappetempt.com/" target="_blank">Amelia</a> says, has been in hibernation, and it feels strange and raw to type here again, like the first squeaks that come out of your mouth when you haven't spoken in awhile or had your morning coffee yet. God knows I need my morning coffee.<br />
<br />
Leave it to <a href="https://www.boobyandthebeast.com/2018/05/reflecting-on-healthevoices18.html" target="_blank">HealtheVoices</a>, a conference for online health advocates, to push me out of my rut and remind me that my voice not only has the power to help me heal, but more importantly, the potential to help others. Side note: I was in a car accident about six weeks ago, hit nearly head-on as I was exiting my neighborhood. My neck and left shoulder have been a mess, and I've been seeing a massage therapist and chiropractor to realign things and feel better. But as she was pressing into my neck and jaw muscles last visit, my therapist noted that those are the muscles that go tense <i>when we have things to say but hold them in</i>. So I am hearing this message loud and clear lately: <i>speak up.</i><br />
<br />
I spent last weekend in Dallas for my <i>fourth</i> HealtheVoices conference, and from the opening session on Friday morning it was clear it was going to stir up some emotions. The speakers talked about resilience, specifically about building resilience through sharing our stories. "We don't heal in a vacuum," said the brilliant <a href="http://ptsdparent.com/about/" target="_blank">Kelly Wilson</a>, when talking about struggles with PTSD. I plopped down right next to her at dinner later to discuss specific therapies as if she herself was going to take my insurance and prescribe me treatment. But she was gracious and kind, and extraordinarily humble about her work. <br />
<br />
This was HealtheVoices' fifth birthday. This year's theme was inspired by <a href="http://www.mydiabeticheart.com/" target="_blank">Mike Durbin</a>, who handed out bracelets last year that say, "A little heart can do big things." More than 140 advocates representing over 60 medical conditions attended this year to share their hearts and the big things they are doing. Half of us were veteran attendees. Someone in their third year joked they hoped they could come back for senior year in 2020, which had me wondering whether it might be my time to graduate. I really hope not, because I still get so much from being there.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGkjlyaqT6slWLgD1grQJBVjBaLMl7iP4oDrlBAaV5EomOjmLa2qnemtqTXCCMqom5WkPomTQ5ONvzL8PtUPsyX4eQzPP9rxoTtkjDrT6EfTdi9qgE5nhalnjlf5vOrSC8mDjKXkIZ1tLo/s1600/IMG_3983.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1199" data-original-width="1600" height="478" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGkjlyaqT6slWLgD1grQJBVjBaLMl7iP4oDrlBAaV5EomOjmLa2qnemtqTXCCMqom5WkPomTQ5ONvzL8PtUPsyX4eQzPP9rxoTtkjDrT6EfTdi9qgE5nhalnjlf5vOrSC8mDjKXkIZ1tLo/s640/IMG_3983.jpg" width="640" /></a></div>
<br />
For one, it's like whoever assigned these quotes (mine was: "The time to relax is when you don't have time for it.") knew exactly who they were talking to. Noted: I need to relax.<br />
<br />
But top on my list are the connections with those who simply get what it means to survive cancer -- all of the loss and fear and "holy shit, why me?" that that entails -- creating a sense of family. We joke about missing body parts and how we complete one another, but all joking aside, these are my people and one weekend a year is not quite enough time with them. If I could get Janssen to sponsor a cancer survivors' road trip, I'd be all over it. Seriously, Ann Marie, can we make that happen?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZwELzAcHfcpz3vgeHNv0mmBnI6BTwOBT6BB7cxO4BBVNsl9PTZrOOJy8xVXhAdGeIdx8kklFamot3e7IHY0L6ioyhltShlqY0rMrKlbJSDoDZXduPeOaaGaYRquePEETN95ipIJdPbecx/s1600/IMG_3941.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZwELzAcHfcpz3vgeHNv0mmBnI6BTwOBT6BB7cxO4BBVNsl9PTZrOOJy8xVXhAdGeIdx8kklFamot3e7IHY0L6ioyhltShlqY0rMrKlbJSDoDZXduPeOaaGaYRquePEETN95ipIJdPbecx/s640/IMG_3941.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Friends from nearly the beginning of my cancer story 💖</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVK5fnqSxnb6vZWDw2Ur2fhaNYpMqaVf_zdMQxRXkzyc5D8xzMLRhpbwy6K1GtJ9N5sAdZYMxkm8-omaliJpWuKSB29JBDoNskIsigXXUXFRn02_FW8ky5XKHcu5KJfNeSVisdA0Lx3X6C/s1600/IMG_3980.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVK5fnqSxnb6vZWDw2Ur2fhaNYpMqaVf_zdMQxRXkzyc5D8xzMLRhpbwy6K1GtJ9N5sAdZYMxkm8-omaliJpWuKSB29JBDoNskIsigXXUXFRn02_FW8ky5XKHcu5KJfNeSVisdA0Lx3X6C/s640/IMG_3980.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My conference family, from left: Justin of <a href="https://aballsysenseoftumor.com/" target="_blank">A Ballsy Sense of Tumor</a>, Ann Marie of <a href="http://www.stupiddumbbreastcancer.com/" target="_blank">Stupid Dumb Breast Cancer</a>, Me, and Kyle of <a href="https://www.youtube.com/channel/UCw173ZEZUCMIhpA2ynEP9ww" target="_blank">Check15</a></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: left;">
A close second are the connections with people outside of the cancer world. In talking to a mom advocating for her child with schizophrenia or a mom living with rheumatoid arthritis, I realize how many issues we share -- finding time for self-care being a universal struggle. Balancing how we talk to our kids about our (or their) illnesses versus the day-to-day of actual parenting while in treatment is a challenge. We can do better when we learn from other advocates. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhayuof0PJDhcWqLmahJGgGf8ddCkmdP6l9Fx55Ue63DwiKD6r7gviRc59oZvQt4PU7H2uK-t5gvCG1wazwInGfTBI2QdtPIpA4zMtyG_84r9iiCGs8ZFLvfKl4qJS_sX9BIKf3UnD968Xy/s1600/IMG_3950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhayuof0PJDhcWqLmahJGgGf8ddCkmdP6l9Fx55Ue63DwiKD6r7gviRc59oZvQt4PU7H2uK-t5gvCG1wazwInGfTBI2QdtPIpA4zMtyG_84r9iiCGs8ZFLvfKl4qJS_sX9BIKf3UnD968Xy/s640/IMG_3950.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Year after year, I am impressed and inspired by how others are changing the healthcare system from within, putting patients first, lobbying Congress for access to care, and speaking out on blogs, at conferences, on podcasts, and everywhere else they can about what it means to live through illness and, more importantly, HELP OTHERS in the process. I think I am the luckiest person in the world that I get to know these humans and learn from them.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc9bXpmGDg40BEMbnZJO5pGELNMRThgP8jruL-99LZGyj3J_SsTgJTN0MzvlsNdmK70F7qUgV8kd_UpcMiGpY2TzvMCGgfA67CUunYY4hV7D4furyCpRpEkFEmuNZCiaje8GDsBVro8gsv/s1600/IMG_3985.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1203" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc9bXpmGDg40BEMbnZJO5pGELNMRThgP8jruL-99LZGyj3J_SsTgJTN0MzvlsNdmK70F7qUgV8kd_UpcMiGpY2TzvMCGgfA67CUunYY4hV7D4furyCpRpEkFEmuNZCiaje8GDsBVro8gsv/s640/IMG_3985.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://oc87recoverydiaries.org/herbie-the-love-bug/" target="_blank">Gabe Nathan</a> and Ann Marie Otis, two of my favorite people</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPPy2JuRoMOqRZEldw6HoOqd8U9tz2XEH46pNXXaHO9M0gziDg__U2qA50sbQbIMtGQWoTj1MQWjwqSkNPTMuG2_0LV-7be1ZlC6ksj219W50o1eweUaXJ1SxBZpi5utbfauvsYdOIRsSg/s1600/IMG_3987+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPPy2JuRoMOqRZEldw6HoOqd8U9tz2XEH46pNXXaHO9M0gziDg__U2qA50sbQbIMtGQWoTj1MQWjwqSkNPTMuG2_0LV-7be1ZlC6ksj219W50o1eweUaXJ1SxBZpi5utbfauvsYdOIRsSg/s640/IMG_3987+2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;"><span style="background-color: #f2f3f5; caret-color: rgb(28, 30, 33); color: #1c1e21; font-size: 13px; text-align: left;"> </span><span dir="ltr" style="caret-color: rgb(28, 30, 33); color: #1c1e21; font-size: 13px; text-align: left;"><span class="_3l3x _1n4g">In this group are warriors battling depression; survivors living with HIV, schizophrenia, epilepsy, and autoimmune disorders; advocates who are in remission from cancer, like me; stroke survivors, and more. I got so lucky when I stumbled across this conference 4 years ago. Every year it reminds me that you never know what those around you are facing (so be kind, always) — AND that our little hearts can do big things.</span></span></span></td></tr>
</tbody></table>
I'm not going to sugarcoat it -- I've had a tough time transitioning home from HealtheVoices, and I know my therapist is going to ask me if it's worth it for the emotional toll it takes to readjust. YES, I will tell her, probably through tears as I grab another tissue from the box and tell her how I got into a conversation with the guy on the plane next to me on the way home. He had tattoos on his hands and face, and spent most of the flight drawing technical sketches of motorcycles on his iPad. While we waited for our pilot to find a gate to park at, I learned that Bryan designs bikes for a living and was in Dallas for a motorcycle race. I talked about cancer -- specifically my friends who advocate for testicular cancer awareness, and passed along a bracelet from <a href="https://aballsysenseoftumor.com/" target="_blank">Justin at A Ballsy Sense of Tumor.</a> He said he'd check it out. "That's so cool what you all are doing," he added, and I wasn't even tempted to downplay our efforts. Because at HealtheVoices I rediscovered my voice and at least some of my value, which is no small thing. Even if it means talking about testicles with a stranger on a plane.<br />
<br />
And also I learned I should probably have affirmations posted to every bathroom mirror for daily reminders that I am enough. We all are. <br />
<br />
Here's to coming out of hibernation. Here's to all our little hearts doing big things.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOMqTDWMYHCjJ083gGc-Qq9tpr1qDy52pUZRlq7Rnhvn70en1yMA2n70qzjefkR1oUGVX57YQ-NGTa91KlAvM8ZxrMgMlhGlMjFjFsbZ_jbkwaM1000vgAjsKt2nicFWA3TfnBWy9vONS/s1600/IMG_3944.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOMqTDWMYHCjJ083gGc-Qq9tpr1qDy52pUZRlq7Rnhvn70en1yMA2n70qzjefkR1oUGVX57YQ-NGTa91KlAvM8ZxrMgMlhGlMjFjFsbZ_jbkwaM1000vgAjsKt2nicFWA3TfnBWy9vONS/s640/IMG_3944.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7DEqF2sttEfryadjfDYYMB7hCA7RhtgWI0Av2C_Xu-2wWSpgQu4XFOf76AvL5IK4gp4LXJCW08YHjRd4uQpEyNcF44aJZl3QnvYG99NKE0gHIhQfM4QnrBqDQ5IOFcnAE9GmPF7X1buf/s1600/IMG_3935.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7DEqF2sttEfryadjfDYYMB7hCA7RhtgWI0Av2C_Xu-2wWSpgQu4XFOf76AvL5IK4gp4LXJCW08YHjRd4uQpEyNcF44aJZl3QnvYG99NKE0gHIhQfM4QnrBqDQ5IOFcnAE9GmPF7X1buf/s640/IMG_3935.JPG" width="640" /></a></div>
<br />
<br />
<br />
<br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-74594915648863466362018-07-26T12:15:00.000-07:002018-07-26T12:15:24.757-07:00To the Dogs Who Run in Rough WatersAlmost ten years ago, Chris and I celebrated our honeymoon on Maui. We coordinated the trip to align with a dear friend's wedding -- the same friend who suggested I start this blog, actually. (Hi, Sara.)<br />
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNCy15sSVJSLrxjcUO5JXN-JYqkrktQHCSRTNilSg3cRHF3QzAyPI5JLz-fk0ZphE8meXFrT_KSFpe3gLzjMbOGVXu27DDOJLIGp6lr0ftuA57IA1KbNM5ibTjNKzWD2OY2yjAz-N70Es/s1600/IMG_1574.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="453" data-original-width="604" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNCy15sSVJSLrxjcUO5JXN-JYqkrktQHCSRTNilSg3cRHF3QzAyPI5JLz-fk0ZphE8meXFrT_KSFpe3gLzjMbOGVXu27DDOJLIGp6lr0ftuA57IA1KbNM5ibTjNKzWD2OY2yjAz-N70Es/s640/IMG_1574.JPG" width="640" /></a></div>
<br />
Sara and her husband Steve's wedding was breathtaking, set on a hilltop overlooking <a href="https://www.google.com/search?q=molokini+snorkeling&client=safari&rls=en&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjj8P2_nLjcAhXFITQIHbHdDtAQ_AUICigB&biw=1280&bih=689" target="_blank">Molokini</a>. The groom's cake was in the shape of a Hawaiian shirt (because they don't take themselves too seriously and cake that looks like a floral shirt makes everyone happy). There was a reading called the blessing of the hands that went something like this, and had many of us choked up:<br />
<div style="background-position: left top; background-repeat: no-repeat no-repeat; border: 0px; box-sizing: border-box; font-stretch: inherit; line-height: inherit; margin-bottom: 15px; outline: 0px; padding: 0px; vertical-align: baseline; word-wrap: break-word;">
<br />
<div style="text-align: center;">
<i>Blessing of the Hands<br /><br />These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow, and forever.<br /><br />These are the hands that will work alongside yours, as together you build your future.<br /><br />These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.<br /><br />These are the hands that will hold you when fear or grief fills your mind.<br /><br />These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.<br /><br />These are the hands that will tenderly hold your children.<br /><br />These are the hands that will help you to hold your family as one.<br /><br />These are the hands that will give you strength when you need it.<br /><br />And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.</i></div>
<div style="text-align: center;">
<br /></div>
I still get choked up reading that. Because I am a sap. I can't help myself. </div>
<div>
<div>
As Chris and I celebrated our new marriage (we were so young and innocent then!) and our friends made vows to begin theirs, another new romance was budding. Our mutual friend Patricia hit it off with the groom's cousin, which was somewhat scandalous and amusing at the time.<br />
<br />
But the heart knows who the heart wants.<br />
<br />
Four years ago, Patricia and TJ got married in DC.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJdqRga2Z6LxJ3SQksjCb0asj64IMlHrhucUVIlXe9YTuhcIsUE6bYrkA1ahQi2erBkIvqJCRBD5fLPtlSgm159LeEV9K7LVGm4GNH02Yefze-tbrKJPDedCPxA0jmPpU5ZLm7aVfTqDB/s1600/IMG_1580.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJdqRga2Z6LxJ3SQksjCb0asj64IMlHrhucUVIlXe9YTuhcIsUE6bYrkA1ahQi2erBkIvqJCRBD5fLPtlSgm159LeEV9K7LVGm4GNH02Yefze-tbrKJPDedCPxA0jmPpU5ZLm7aVfTqDB/s640/IMG_1580.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Four years ago: me with Patricia (center) and Sara, who inspired me to start this blog</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_t3PNchMXRChuPPDpg7831sIsmQK-h1KanTX_020tU05i3Z1m1HM9xvsQZ49-_ygHgat7eAkx_OTl8QeVjfg13Q4A8ABJTx0WdYg6actqW1VZk_PsIrnM8_vpuZusdHjjg6ZH1eEx6ga9/s1600/1932594_10152112662437153_1612514903013518974_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="893" data-original-width="1600" height="356" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_t3PNchMXRChuPPDpg7831sIsmQK-h1KanTX_020tU05i3Z1m1HM9xvsQZ49-_ygHgat7eAkx_OTl8QeVjfg13Q4A8ABJTx0WdYg6actqW1VZk_PsIrnM8_vpuZusdHjjg6ZH1eEx6ga9/s640/1932594_10152112662437153_1612514903013518974_o.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The stunning couple</td></tr>
</tbody></table>
***<br />
<br />
More than a dozen years ago, Patricia and I were neighbors in DC. We became friends shortly after her mom passed away from stomach cancer. She saw me through my own heartache, but she was never one to wallow so neither could I. With a sternness befitting someone who spent her early years in communist Hungary, she would push me to get back out there and remind me that I'm fabulous just as I am.<br />
<br />
She watched my cats when I went out of town; scolded me when I'd have a late-night cigarette after getting home from a bar (she could hear my window open, and would open hers to tell me to quit it); and gave me something to aspire to because she OWNED her condo which I thought was the epitome of success.<br />
<br />
And then, when I had moved across the country and was diagnosed with cancer, Patricia was one of the first people to swoop in and help take care of my family after my mastectomy. I hardly remember the week she was here, I was in such a Vicodin-induced stupor. I'm sure she told me to be nicer to Chris. She made Quinn giggle and brought him books, and made sure our cats were fed. She probably made sure we were fed, too.<br />
<br />
Through all of this, her love TJ was in and out of stability (though not remission) from Hodgkin's Lymphoma. In his own words this spring:<br />
<span style="color: #1d2129; font-family: , , "blinkmacsystemfont" , ".sfnstext-regular" , sans-serif; font-size: 14px;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3R_yNjvYT-iJ6Pbsu8ZeWlBUBJqMj29k2DMLu5MLSNC-wD7aMfKUeOPqgBl_XBZmPd4EshjzdhEFfVHOq_0sU4e_gNODR9lxfVAFXkSf3sGQLrV4MvjE61B6qM9qpkvHwv5INLFGzou8l/s1600/Screen+Shot+2018-07-24+at+11.05.39+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="486" data-original-width="1010" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3R_yNjvYT-iJ6Pbsu8ZeWlBUBJqMj29k2DMLu5MLSNC-wD7aMfKUeOPqgBl_XBZmPd4EshjzdhEFfVHOq_0sU4e_gNODR9lxfVAFXkSf3sGQLrV4MvjE61B6qM9qpkvHwv5INLFGzou8l/s640/Screen+Shot+2018-07-24+at+11.05.39+AM.png" width="640" /></a></div>
So not only was Patricia caring for my family, but she was also worried about her own spouse. She mentioned a time or two to me that she was terrified, that being a caregiver is FUCKING tough, but she was always quick to put the focus back on TJ (and me). "It's YOU guys who have to go through it all and have all this poison put into your bodies," she'd say.<br />
<br />
When I'd occasionally go back to DC for advocacy work or a visit, I'd try to meet up with Patricia and TJ. He and I would compare treatments over miso soup or brunch. We'd talk about port discomfort and side effects. But that gets boring pretty quickly even to cancer patients, so we'd also try to talk about current events, trips we had planned, and how hopeful we were. Science is always making progress, right?</div>
<div>
<div style="caret-color: rgb(29, 33, 41); color: #1d2129; display: inline; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; margin-top: 6px;">
<br /></div>
</div>
<div>
<div style="caret-color: rgb(29, 33, 41); color: #1d2129; display: inline; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; margin-top: 6px;">
***</div>
</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div>
I have often referred to Hawaii as my happy place. I think part of that stems from having lived there for a few years as a kid and having these incredible memories: of rolling in the waves, learning to boogie board, sandy hair after a day of swimming, camping on the beach (even if centipedes crawled up the outside of our tent), and climbing the intensely fragrant plumeria tree in our front yard to gather flowers for making leis.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitK-j0iHGNwynJvMFSW9Ws3jTdDDs1gRRzOrSJ2lVLkaILipdiHduQsLvIAHiWyH4s02_FaOwp7iLzlFgg46_yuMhYRb3tRxNpY17kCTGsfzhqV4vM7pwA8I8XdKG3bE7tmG030t753ZeW/s1600/IMG_0281.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitK-j0iHGNwynJvMFSW9Ws3jTdDDs1gRRzOrSJ2lVLkaILipdiHduQsLvIAHiWyH4s02_FaOwp7iLzlFgg46_yuMhYRb3tRxNpY17kCTGsfzhqV4vM7pwA8I8XdKG3bE7tmG030t753ZeW/s640/IMG_0281.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Overlooking <a href="https://www.google.com/search?q=hanauma+bay&client=safari&rls=en&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjDjo_EgbzcAhXjsFQKHXoMAgoQ_AUICygC&biw=1280&bih=689" target="_blank">Hanauma Bay</a>, circa 1982</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzb_Y5HM4CJN06wWNTm5xD7ubfSyFC-lv2_LjtTDgJcQL2_J5Vk4-CVoNxyZxFRHwZDVDYVhq9yLht7nuSphqnhCtf1YZ-RC713DQ0eFXDE5VRlRdNP2mxZ7sF4tZoO-9p4GtLlg7qpuxC/s1600/IMG_1573.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="374" data-original-width="510" height="468" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzb_Y5HM4CJN06wWNTm5xD7ubfSyFC-lv2_LjtTDgJcQL2_J5Vk4-CVoNxyZxFRHwZDVDYVhq9yLht7nuSphqnhCtf1YZ-RC713DQ0eFXDE5VRlRdNP2mxZ7sF4tZoO-9p4GtLlg7qpuxC/s640/IMG_1573.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My younger brother and me on Oahu, possibly the last time I was taller than him</td></tr>
</tbody></table>
In the spring of 2016, our family of three went to Kauai to spread Chris's parents ashes off the coast, as they had requested. They loved the aloha spirit, too. And Hawaii was still my happy place, but that was an admittedly bittersweet trip. Not only did it feel like Chris was saying a final good-bye to his mom and dad way too young in life, but I had just had my last infusion of chemo and would come home to have the scans and lung biopsy that <a href="https://www.boobyandthebeast.com/2016/10/an-announcement.html" target="_blank">turned my cancer story upside down</a>.<br />
<br />
About a week and a half ago, our family returned from another trip to Kauai. This one was planned as a weeklong celebration of my friend Julee's one-year cancerversary. Is there this much cancer in your stories, too?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmTl9rcNfBJ7mJnZRMbFzg_hOupmTOVckooAXF0A_66AeQyVWko83UTHI9hFVJZgIIptPT0iagSz5bI8KytuE01LTDSH2qy8AZa9wx0ar2KeM3Uz8mD71lvxyTYMplcoPaSQDNNyLnFo3g/s1600/fullsizeoutput_3d78.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1203" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmTl9rcNfBJ7mJnZRMbFzg_hOupmTOVckooAXF0A_66AeQyVWko83UTHI9hFVJZgIIptPT0iagSz5bI8KytuE01LTDSH2qy8AZa9wx0ar2KeM3Uz8mD71lvxyTYMplcoPaSQDNNyLnFo3g/s640/fullsizeoutput_3d78.jpeg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How does she look so well-rested after a 7 a.m. hour-long hike??</td></tr>
</tbody></table>
And to most people who ask, I'll say this latest trip was magical and amazing, because it was and that's still what Hawaii means to me. I'll talk about taking surf lessons with Quinn, and the complete freedom and glee I felt standing up on that board after watching my 7-year-old son do the same. I'll describe our after-dinner walks in the dark down to the beach to visit the sea turtles who'd come ashore to rest for the night, and the night sky that was lit up with a billion <i>and one</i> stars. I'll say that the first few days were an adjustment because of Noelle's sleep schedule and the time change, and that next time we need to just go for longer -- obviously, the only solution is MORE time in paradise. All of that is true.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_3p-_4_wdtQEqnHTz1fxJVrn9McsV9VIDFkYJ2vpTlu9WxJ33DbwuPc2-2QfJNALUv5Af03wZUlDE8lmWn4qWXIRMjZEMkM_JPrugdXUi-UgKMr0QjBGtodHiGFgwwKzfRh89Qx6RhA32/s1600/IMG_1354.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_3p-_4_wdtQEqnHTz1fxJVrn9McsV9VIDFkYJ2vpTlu9WxJ33DbwuPc2-2QfJNALUv5Af03wZUlDE8lmWn4qWXIRMjZEMkM_JPrugdXUi-UgKMr0QjBGtodHiGFgwwKzfRh89Qx6RhA32/s640/IMG_1354.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0ptyPi0SP9YtKcS1EE5K8tRNMJh2Cur3GG09ongxwnw2_ZnuVkm2X-ZcwqkZWgbAZ4_nyvJ89GFMpqITt_bo5Dshp43PzviXZOtorhz3aRka0NvnwcBwJ3x4q7bMHuM0dKMYU-8hOw3jT/s1600/IMG_1503.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0ptyPi0SP9YtKcS1EE5K8tRNMJh2Cur3GG09ongxwnw2_ZnuVkm2X-ZcwqkZWgbAZ4_nyvJ89GFMpqITt_bo5Dshp43PzviXZOtorhz3aRka0NvnwcBwJ3x4q7bMHuM0dKMYU-8hOw3jT/s640/IMG_1503.JPG" width="640" /></a></div>
<br />
What I haven't told many people is that shortly after we landed on the 4th of July, I saw the news that TJ had passed away that morning. I immediately reached out to Patricia, but after so many losses, I still don't know what to say when a 33 year old dies.<br />
<br />
"I'm so, so sorry. I love you. We just arrived in Hawaii, which will always remind me of the beginning of your love story. I can be there soon if you need me."<br />
<br />
I sobbed in the Safeway parking lot in Lihue, as Quinn kept asking what was wrong from the back seat, bless his enormous heart. I drank too many mai tais that night. When Noelle woke up at 5 the next morning, I wrapped her to my chest, walked down to the water, and cried big tears next to a Hawaiian monk seal, an endangered species native to the islands and -- according to Wikipedia -- known to native Hawaiians as ʻIlio-holo-i-ka-uaua, or "dog that runs in rough water." I marveled at the power of the ocean and felt a terrible tug in my heart.<br />
<br />
I couldn't believe he was gone.<br />
<br />
Because honestly? On the question of one of us dying, I always expected it would be me. For years, my prognosis was worse. I have no idea why I have survived and TJ (and dozens of other friends) have not. To bear witness? To advocate for more funding for research and rally for politicians who don't want to take our access to healthcare away? To remember that love and connection are risky but worth it because they are also <i>everything</i>?<br />
<br />
If cancer and TJ have taught me anything, it's to find some greater purpose and live it without apology.<br />
<br />Here's to the dogs who run in rough water, to those among us dying too young, and too quickly. May they inspire us and remind us to live our best lives RIGHT THIS MINUTE.<br /><br /> <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicbGP-vuKsFL-xyHv840tllrVvdbHU3ybo62pfZi-KRjb98KVatZnH_aHFEvYVBJdoc_lyI9J5wUNsnOX1ybonBieZasfCmYrZmB8ORtgG4m94NfXEmU_2hlOejeh9cEphAOlebYVqeAIh/s1600/IMG_1358.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicbGP-vuKsFL-xyHv840tllrVvdbHU3ybo62pfZi-KRjb98KVatZnH_aHFEvYVBJdoc_lyI9J5wUNsnOX1ybonBieZasfCmYrZmB8ORtgG4m94NfXEmU_2hlOejeh9cEphAOlebYVqeAIh/s640/IMG_1358.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUkMIl8nxujy_KUT81vbC3EI3uGilNQv1uTy63coI9M9aOJWJApavgoJ1shQq-6oi_1AfkVDFRLl92QDQck8JRgul6q4iVrkdOF1d8iyd5BXKyQve7X9DOLNZoseUsuBwr2TYeNVJCwW9/s1600/IMG_1360.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUkMIl8nxujy_KUT81vbC3EI3uGilNQv1uTy63coI9M9aOJWJApavgoJ1shQq-6oi_1AfkVDFRLl92QDQck8JRgul6q4iVrkdOF1d8iyd5BXKyQve7X9DOLNZoseUsuBwr2TYeNVJCwW9/s640/IMG_1360.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br /></div>
<div>
<br /></div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-16922842528609837862018-07-18T14:52:00.003-07:002018-07-20T10:31:45.063-07:00WEGO Health AwardsI'm not sure which one of you did it, but whoever nominated me for not one but <i>two</i> WEGO Health Awards (Best in Show: Blog and Patient Leader Hero) -- THANK YOU!<br />
<br />
Some beautiful soul named Rhonda had this to say:<br />
<br />
<span style="box-sizing: border-box; caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 10.5px; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><span class="quote fa fa-quote-left" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; color: #cccccc; display: inline-block; font-family: FontAwesome; font-size: inherit; font-stretch: normal; line-height: 1; text-rendering: auto;"></span> </span><span style="background-color: rgba(255, 255, 255, 0.952941); caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;"></span><i style="box-sizing: border-box; caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;">Jen isn't "just" a patient leader hero. She is THE HERO of all time! The energy Jen gives off is welcoming, wise, & w/ those things brings a level of comfort. You don't have to chat w/ her long before realizing she is INCREDIBLE. From a *terminal* cancer DX to navigating parenthood & autoimmune disease, Jen is here. Sharing. Loving. LIVING. <3</i><span style="background-color: rgba(255, 255, 255, 0.952941); caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;"> </span><span style="box-sizing: border-box; caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 10.5px; line-height: 0; position: relative; top: -0.5em; vertical-align: baseline;"><span class="quote fa fa-quote-right" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; color: #cccccc; display: inline-block; font-family: FontAwesome; font-size: inherit; font-stretch: normal; line-height: 1; text-rendering: auto;"></span> </span><span style="background-color: rgba(255, 255, 255, 0.952941); caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;"></span><b style="box-sizing: border-box; caret-color: rgb(65, 65, 65); color: #414141; font-family: Raleway, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;"> — Rhonda</b><br />
<br />
It means the world to have my work here recognized. As I change yet another diaper or wash another bottle (how do the dried bits of formula get so <i>glued</i> up into the nipples, anyway?!) and feel like I'm not doing as much advocacy or policy work or writing as I'd like lately, it made me a little teary-eyed just to be nominated.<br />
<br />
<div>
To be fair, we also went on vacation last week, where I was still very much changing diapers, just with prettier views.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh3DVOYb_NbWQ0OIjAxgrkPrqtYED7ox6Y1heeanYRmCz7NBjCuchHmiveOcrmLlB2OBIiYpUoBig4k5Fnm5jfoGr_XIvF72j2zvosr2yn5oWlx2UoekxYO2klNovlibDJQK_1mhckhRkx/s1600/fullsizeoutput_3d7a.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh3DVOYb_NbWQ0OIjAxgrkPrqtYED7ox6Y1heeanYRmCz7NBjCuchHmiveOcrmLlB2OBIiYpUoBig4k5Fnm5jfoGr_XIvF72j2zvosr2yn5oWlx2UoekxYO2klNovlibDJQK_1mhckhRkx/s640/fullsizeoutput_3d7a.jpeg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6oFe0QWTDYT3q54M-rOQ24q0FTtgIwYgvlskrg2RRxMoumD_bsxRxSlECnG1a2IQmxrCtUcQlPX06kKMWgSdE0eVpRENMaOcznObddcqZ4i4_PIPu1m2zo_YUdQSvsT4CD6s9rgUKvAe/s1600/fullsizeoutput_3d72.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6oFe0QWTDYT3q54M-rOQ24q0FTtgIwYgvlskrg2RRxMoumD_bsxRxSlECnG1a2IQmxrCtUcQlPX06kKMWgSdE0eVpRENMaOcznObddcqZ4i4_PIPu1m2zo_YUdQSvsT4CD6s9rgUKvAe/s640/fullsizeoutput_3d72.jpeg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
I've got to figure out a way to advocate from Hawaii...<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div>
In the meantime, here is a truth I've learned, and I think the attribution goes to Madeleine Albright: as a woman, you might be able to have it all, but not all at once. You can go on vacation to celebrate a friend's one-year cancerversary, you can have a kick-ass career (or so I've heard), you can have children and/or pets and be a good mom to them, you can volunteer for organizations that make your heart sing, you can cook homemade meals every night, you can write a memoir, and you can run marathons or hold a handstand in yoga. You just cannot do all these things at once.<br />
<br />
Especially don't try to do a handstand while making dinner. You are not Dr. Seuss.<br />
<br />
Because this advocacy work (and stay at home mom work!) isn't often paid, and because my husband has a job that expects him to be in the office (the gall), I can't say yes to every opportunity. As much as I'd like to learn more about the <a href="http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/project-lead-institute-2018.html" target="_blank">science of breast cancer</a> or <a href="http://escape4advocates.org/" target="_blank">how to be a better advocate</a> or <a href="https://www.canceradvocacy.org/cancer-advocacy/cpat/" target="_blank">lend my voice to try to talk some sense into Congress</a>, it's not always feasible, with a 7-month-old and a 7-year-old to take care of. To be honest, I have felt wholly deflated more than once this year because I've had to turn down pretty incredible experiences due to a lack of childcare.<br />
<br />
And then the one conference I did attend, I missed the dickens out of my kids. Ah, parenting.<br />
<br />
But also, those who say they want to hear and incorporate patient voices could be better about compensating patients, am I right? At least cover some costs so more of us can participate? (Huge shout-out to the team at HealtheVoices here). As for the rest, a woman can dream.<br />
<br />
My point is, I wish I was doing more in this space but my efforts have been temporarily curtailed by a peanut named Noelle and her big brother. They demand (and deserve) the majority of my attention for a bit. So it makes me even more verklempt at these <a href="https://awards.wegohealth.com/nominees/13625" target="_blank">nominations</a> because this year has been such a different kind of challenge. Turns out, parenting is exhausting even if you're not also being treated for cancer.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvZxYm8d-IhzBsAwSZpetlYMZSsEf-llpwILxPbgaFuPL5BwIFi2HaAVHJYLh1Q5A5IIezwH0SRRMAaWMBQ-qd0gInP9Bf6X3puuOQ6r0yYOejkp8ZtA1t-BhyuxXcGSxMy8yjhtnMIaST/s1600/fullsizeoutput_3d84.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvZxYm8d-IhzBsAwSZpetlYMZSsEf-llpwILxPbgaFuPL5BwIFi2HaAVHJYLh1Q5A5IIezwH0SRRMAaWMBQ-qd0gInP9Bf6X3puuOQ6r0yYOejkp8ZtA1t-BhyuxXcGSxMy8yjhtnMIaST/s640/fullsizeoutput_3d84.jpeg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoUljDdz9V3Fhweev5sFrJi89QtujnsnpOEoNMQ5FjEGF9HFkvLxRdZdJr89Rgq7ueDXWgp41-OgVRpRreYppFCBJtNaZIF0MhibD8RftTVMhGzKvHPKxnXx5HuheTFtSpxjCEBfMT9It0/s1600/fullsizeoutput_3d71.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoUljDdz9V3Fhweev5sFrJi89QtujnsnpOEoNMQ5FjEGF9HFkvLxRdZdJr89Rgq7ueDXWgp41-OgVRpRreYppFCBJtNaZIF0MhibD8RftTVMhGzKvHPKxnXx5HuheTFtSpxjCEBfMT9It0/s640/fullsizeoutput_3d71.jpeg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
If you have a moment, please consider endorsing me for one or both nominations. I appreciate it -- and you all -- so much.<br />
<br />
<script src="https://badges.wegohealth.com/ha-awards-2018.js?referrer=Cx7I2oMYQXaKeLlOwIGpig" type="text/javascript"></script>
<br />
<script src="https://badges.wegohealth.com/ha-awards-2018.js?referrer=DJqu_z0QbicNndjtWjDzJg" type="text/javascript"></script>
</div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-38692032067531628652018-06-21T13:30:00.001-07:002018-06-21T13:30:53.573-07:00A NightmareWhat a week. I had my six-month follow up scan on Monday, which always brings an onslaught of new pains and unwelcome sensations in my chest. A strange pull here, a shortness of breath there, a telling knot that tastes like bile in my throat. I have trouble sleeping in the days before, even with the exhaustion of new-parenthood. I growl at the cat for meowing too much and swear more than I should. This is what scanxiety looks like, and when I ask my oncologist if it ever goes away, he just shrugs.<br />
<br />
Over the weekend, we got back to Arizona after ten days in Idaho and Washington visiting family and friends. And while it was <i>mostly</i> relaxing, mostly wonderful to escape the heat and visit with loved ones in some of the most beautiful settings that exist, I couldn't shake a sense of panic.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi12cKtfLQaEZbceJUF3D2VcJDW_S8-59IEfW2GAy9ou3q2lfQT6S7oEBNcwRHidMIJ5ksQbrGG8LhFhNiHeDuqpj42h6GiLsvYPsQRGlEqybZUXBxAxPoqNgCHOyfdvH-1EULIg6AZ-93H/s1600/fullsizeoutput_3d1a.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi12cKtfLQaEZbceJUF3D2VcJDW_S8-59IEfW2GAy9ou3q2lfQT6S7oEBNcwRHidMIJ5ksQbrGG8LhFhNiHeDuqpj42h6GiLsvYPsQRGlEqybZUXBxAxPoqNgCHOyfdvH-1EULIg6AZ-93H/s640/fullsizeoutput_3d1a.jpeg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">cousins</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfr27fZm7zZvZvZGWSQN0WUO0bZ12GEHBSODFMthahdz1bK2GUHBtyddFLBU7TbEGtugg9_xa9MpNZz6StTjk6O_XPM4WbjgL1eC1zOMnB5iOJqBJAE_3ENibiaetzvnIRks0N6bfiXbek/s1600/fullsizeoutput_3d1f.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1127" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfr27fZm7zZvZvZGWSQN0WUO0bZ12GEHBSODFMthahdz1bK2GUHBtyddFLBU7TbEGtugg9_xa9MpNZz6StTjk6O_XPM4WbjgL1eC1zOMnB5iOJqBJAE_3ENibiaetzvnIRks0N6bfiXbek/s640/fullsizeoutput_3d1f.jpeg" width="450" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD-Ke1Mz4W5OEVC1nTu85yG6xuCemdXGHoqi0BP6kz1CrAn8uFq-weYA8eP6G5nNeJaHDMp0OeubgUvq8LaE8NTyKzU2GMgyl_MUcDkF1PmZtYvQQc7gNkOmuhXLR8-WvMEB8336p3t4rZ/s1600/fullsizeoutput_3d0e.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD-Ke1Mz4W5OEVC1nTu85yG6xuCemdXGHoqi0BP6kz1CrAn8uFq-weYA8eP6G5nNeJaHDMp0OeubgUvq8LaE8NTyKzU2GMgyl_MUcDkF1PmZtYvQQc7gNkOmuhXLR8-WvMEB8336p3t4rZ/s640/fullsizeoutput_3d0e.jpeg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA8Xb5Xw4bZcHWzfQwOhhJzWfsuP4JkWnCSxJX0ZgLXPRnv4pgTAqrJWYdJpjiYQLGMsdG-RPk7_X2EsNBbcrR4lLl0Ti8As2e2rpCWJ3ISmdkd42zxsWJKZJWkyYhMrhZGnWHjj5h2ZsT/s1600/fullsizeoutput_3d15.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA8Xb5Xw4bZcHWzfQwOhhJzWfsuP4JkWnCSxJX0ZgLXPRnv4pgTAqrJWYdJpjiYQLGMsdG-RPk7_X2EsNBbcrR4lLl0Ti8As2e2rpCWJ3ISmdkd42zxsWJKZJWkyYhMrhZGnWHjj5h2ZsT/s640/fullsizeoutput_3d15.jpeg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Chris woke me up one night in the middle of our trip, as I was gasping for air and thrashing with the bedsheets. When he asked me what I'd been dreaming about, I sleepily replied, "Frankenstein." He did his best not to laugh at me at 3 in the morning.<br />
<br />
My dream wasn't actually about Frankenstein. Frankenstein was just the only word that came to my sleep-fogged mind in the middle of the night. It was a werewolf that was chasing me. In my nightmare, I had the distinct understanding that if this werewolf caught up to me, it would mean more cancer. As I got more and more entangled in the sheets, the werewolf was closing in on me. Then just as it was about to grab hold of me, Chris woke me up. My first thought was that I hadn't <i>really </i>escaped; I'd just been lucky and awoken at the right moment. Cancer could still be lurking. It took me a long while to fall back asleep.<br />
<br />
In a moment of terror on Sunday night as I was feeling helpless about my scans and about the atrocities happening to children at our southern border, Chris stepped in to comfort me. "It probably WILL show something," he said, to which I cocked my head and raised my eyebrows.<br />
<i><br /></i>
<i>What kind of comforting was </i>this<i> supposed to be?</i><br />
<br />
"But it's most likely sarcoidosis," he added. That <a href="https://www.boobyandthebeast.com/2016/10/an-announcement.html" target="_blank">spot on my elbow</a> is back and lingering, despite a steroid shot in December. I thought back to my incessant coughing at the HealtheVoices conference in April.<br />
<br />
Monday afternoon, my oncologist called to tell me my scan was all clear. But then I met with him Tuesday, and the radiologist's report clearly says I have a 4mm nodule on my right lung <i>that has been unchanged since at least 2014</i>.<br />
<br />
WTF.<br />
<br />
There has never been any mention of this nodule; my left lung was the one biopsied in 2016. I checked my file and the tiny scar next to my port scar.<br />
<br />
At home, Chris scoured prior scan reports, and there's nothing except a passing mention of potential radiation fibrosis, whatever the hell that is. In any case, my oncologist isn't concerned and says we'll just watch this spot. Strangely, I am not completely freaking out. But I am calling my oncologist to ask about fibrosis, and my pulmonologist to get a closer lung inspection. And I might need another vacation.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-13238701008083682672018-05-10T14:07:00.002-07:002018-05-10T14:07:46.276-07:00Reflecting on HealtheVoices18A couple of weekends ago, I went to Chicago to <strike>get some sleep in a hotel without middle-of-the-night baby feedings</strike> attend a conference supporting online health advocates. HealtheVoices is in its fourth year, and this was my third time attending. I skipped last year because Chris had a conference at the same time <i>and </i>I was newly pregnant and <a href="http://www.boobyandthebeast.com/2017/06/" target="_blank">freaking out about that</a>.<br />
<br />
It's a conference that brings together advocates across several health conditions. More than forty different illnesses were represented this year. What that does is allow us all to find common ground, to share and learn from one another, and even drum up ways to collaborate. By gathering together, we realize that many of our symptoms, fears, and struggles are the same, whether we are cancer survivors or living with chronic pain or coping with an autoimmune disease (or several). It also reminds us to be kind, because you never know what another person has been through.<br />
<br />
As I always said when I thought I had metastatic breast cancer (MBC), I didn't always <i>look </i>sick.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpmtKkCHkN6QwFqvWt0PSY0WpuDLbfL21qi70fFFNNGxhTqNG6XaWzTLzeQEwfpJV19_7LMIQFaHRs5QPkweH7VNWMq1x_UstPMudIM7Jxu9rlqVxCyNLh3HJ1WWFY4v_zRPEgJKRTk_nI/s1600/IMG_0953.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1223" data-original-width="1242" height="630" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpmtKkCHkN6QwFqvWt0PSY0WpuDLbfL21qi70fFFNNGxhTqNG6XaWzTLzeQEwfpJV19_7LMIQFaHRs5QPkweH7VNWMq1x_UstPMudIM7Jxu9rlqVxCyNLh3HJ1WWFY4v_zRPEgJKRTk_nI/s640/IMG_0953.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is like a game of Where's Waldo?</td></tr>
</tbody></table>
This year's conference opened with breakout sessions for a few advocate groups. In our relatively small group of cancer survivors, I was especially floored by how many of us were diagnosed as young(ish) adults, whether with breast cancer, testicular cancer, or lymphoma. And this session -- where I met <a href="https://twitter.com/cuck_fancer" target="_blank">Ben</a> and <a href="https://www.instagram.com/aballsysenseoftumor/" target="_blank">Justin</a> and <a href="https://www.instagram.com/radiantracheli/" target="_blank">Racheli</a> and <a href="https://www.instagram.com/kathryn_dyer/" target="_blank">Kathy</a> -- kicked off a weekend where I was continually inspired, and if I'm being honest, a bit challenged to find my own road post-cancer.<br />
<br />
Some of these people are doing wildly amazing things to support new patients and bring awareness to their communities, so there were a number of times when I wondered if I'm doing <i>enough</i>, and what my purpose even is in a post-MBC world (more on this later). But as speaker after speaker reminded us, if we are reaching just one person, we are making a difference. Related: it's not about likes or retweets (even if those do make us feel more useful).<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC75459OTh-wn7F4M_6PjcuLa6uPXv3V188-5U4DQTODF6_dGBNlA_rd7hkPYS_Vn7lvSAu9uLY1_I0iq-zhDnRXeuhEiROwU1vLZsSGc8TiwetXkEv_5witHAu4NwuOVNExKZ3BE3fllZ/s1600/IMG_1008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1333" data-original-width="1333" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC75459OTh-wn7F4M_6PjcuLa6uPXv3V188-5U4DQTODF6_dGBNlA_rd7hkPYS_Vn7lvSAu9uLY1_I0iq-zhDnRXeuhEiROwU1vLZsSGc8TiwetXkEv_5witHAu4NwuOVNExKZ3BE3fllZ/s640/IMG_1008.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We have affectionately captioned this one: two balls, no boobs...</td></tr>
</tbody></table>
The organizers asked me to sit on a panel about resilience and tell my story about coping with major stressors in my life. What? There've been one or two. I said yes, even if I'm not feeling my most resilient lately. A teething baby and looming CT scans and possible PTSD will do that to a person.<br />
<br />
On Friday, I sat on the stage with another young(er) woman from Phoenix, <a href="https://twitter.com/Epileptea" target="_blank">Kate</a>, who lives with epilepsy; <a href="https://www.facebook.com/johnmanuelandriote" target="_blank">John-Manuel</a>, who is an author and <a href="https://www.psychologytoday.com/us/blog/stonewall-strong/201805/living-serious-illness-offers-big-lessons-resilience" target="_blank">journalist</a> living with HIV; <a href="https://twitter.com/bethecactuskenz" target="_blank">Kenzie</a>, who made it so there wasn't a dry eye in the room as she spoke about choosing to stay in this world, even as a young twenty-something living with rheumatoid arthritis, Crohn's disease, and Addison's disease (when your adrenal glands aren't producing enough of certain hormones); and the refreshingly positive <a href="https://www.facebook.com/TheLupusLiar/" target="_blank">Hetlena</a>, whose simple advice to "be mad for five minutes, then be done with it" stuck with me, even if I don't always follow that wisdom.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirk8Y7dzm3Zo8T6qLOF_Ubf0IpyQyeyCgqQWTnafkqReQcaYtarBzvV5aAK0_EO6CCR2qZVkmgXGYyGR9i_yXV-Fzc8UzTVCUATCWlg-wjuKSp6Ob1RTw9B9LFxcnaUj70i8iC1cfxkgMB/s1600/IMG_0921.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="494" data-original-width="960" height="328" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirk8Y7dzm3Zo8T6qLOF_Ubf0IpyQyeyCgqQWTnafkqReQcaYtarBzvV5aAK0_EO6CCR2qZVkmgXGYyGR9i_yXV-Fzc8UzTVCUATCWlg-wjuKSp6Ob1RTw9B9LFxcnaUj70i8iC1cfxkgMB/s640/IMG_0921.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Apparently I chew my nails when I'm nervous...</td></tr>
</tbody></table>
Certain themes arose again and again. We are resilient because we are grateful for what we have, rather than dwelling on what we've lost. We all talked about finding purpose -- not that any of our illnesses are gifts, but choosing <i>how </i>we've responded to our diagnoses can give them meaning. And one after another, we talked about how the stories we tell ourselves -- and the world -- about our illnesses can shape our realities. <a href="http://storyyoutell.com/" target="_blank">My friend Sandi wrote an entire book about this theme.</a> (You should read it.)<br />
<br />
I participated in another break-out session on parenting through a chronic illness. We touched on feeling guilty for the days when we couldn't get off the couch (though my friend <a href="https://crazycreolemommy.com/" target="_blank">Brooke</a> had a good point: she said she doesn't feel guilty for those crushing exhausted days, but rather the days when she actually felt well and still wasn't completely present for her son). We talked about how (and how much) to share with kids about our illnesses. We all cried. I'm not gonna lie, I could use this sort of group therapy on a weekly basis.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFYo68sxMdzPietwizJ3PUuXw51glv6RoBYYY5ERWms9z3IFNpcjkJ4XOj6AT-O3Wt-d6mEuL5jht15O_k9l3pyP-uQG4mMeA-ALRqGX66FOMECeMOV09lrXjMawIehpce6-o_2DnWlszx/s1600/IMG_0940.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="721" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFYo68sxMdzPietwizJ3PUuXw51glv6RoBYYY5ERWms9z3IFNpcjkJ4XOj6AT-O3Wt-d6mEuL5jht15O_k9l3pyP-uQG4mMeA-ALRqGX66FOMECeMOV09lrXjMawIehpce6-o_2DnWlszx/s640/IMG_0940.JPG" width="640" /></a></div>
<br />
On the last day, I shared a bus ride to O'Hare with the keynote speaker (and fellow sarcoidosis-sufferer, though she has it much worse than I do), <a href="https://www.amazon.com/Backbone-Living-Chronic-without-Turning/dp/1628727950" target="_blank">Karen Duffy</a>. Yes, the former MTV VJ and bestselling author. We mostly talked about our sons and just a little about our experiences with sarcoidosis. We didn't talk about "Dumb and Dumber" at all.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1y0DjBK73QCBmieMjtp2SYJ8iiYqIdbP8jQ9bOevTFAsuEcN8DxtXauahdmeCmtEN5HDAvRAeR_AhJbYgMHSZcoSfth1dnaZ_5Eh8soEWuJck78IAauazovffgxz9ZU1XLEhMlBsimS8s/s1600/IMG_0941.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1y0DjBK73QCBmieMjtp2SYJ8iiYqIdbP8jQ9bOevTFAsuEcN8DxtXauahdmeCmtEN5HDAvRAeR_AhJbYgMHSZcoSfth1dnaZ_5Eh8soEWuJck78IAauazovffgxz9ZU1XLEhMlBsimS8s/s640/IMG_0941.JPG" width="640" /></a></div>
<br />
I missed my kids a lot. Whenever I'm away, Quinn's voice on FaceTime seems so much smaller and younger to me (perhaps because I've only talked to adults for a few days?) and it reminds me to slow down and pay close attention to him when I'm home. This was my first time away from Noelle, and I was mostly fine until I held my friend <a href="http://www.fromthispointforward.com/" target="_blank">Mariah's</a> daughter.<br />
<div>
<br /></div>
<div>
<div>
<span style="text-align: start;">Coming home from HealtheVoices was bittersweet. It is a marathon few days of networking and emoting and baring our souls. I caught up with old friends from previous years, and felt instant connections with new ones. I hope I'm lucky enough to get to participate again and again.</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="text-align: start;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: 1em; margin-right: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlHJ572irmNzwA5frWWAFofAPq_9JjLHofIH08k443jCO6q-qBqeFruOc38F8X1KONQ73WDPK0I_mGOVM8gtKr8HkwHN3YjCQZEgyMq1cApCzxzba6FXA9VcSLuHRbQphgMC5Ckc8HaTqO/s1600/IMG_0942.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1203" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlHJ572irmNzwA5frWWAFofAPq_9JjLHofIH08k443jCO6q-qBqeFruOc38F8X1KONQ73WDPK0I_mGOVM8gtKr8HkwHN3YjCQZEgyMq1cApCzxzba6FXA9VcSLuHRbQphgMC5Ckc8HaTqO/s640/IMG_0942.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With the extraordinary Chrisa of <a href="http://themindstorm.net/" target="_blank">The Mindstorm</a></td></tr>
</tbody></table>
<i>Disclaimer: Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.</i><span style="color: transparent; font-family: ITCAvantGardeStd-Demi, serif; font-size: 12px; white-space: pre;"><i>ssen covere</i>d my travel expenses </span><br />
<div class="textbox" dir="ltr" style="bottom: 320.866088867188px; color: transparent; cursor: text; font-family: ITCAvantGardeStd-Demi, serif; font-size: 12px; left: 72.5135955810547px; line-height: 1; opacity: 0.4; padding: 0px; position: absolute; transform-origin: left bottom 0px; transform: rotate(0rad) scale(1.1496769536278078, 1); white-space: pre;">
to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.</div>
<br /></div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-58144988985281063982018-04-27T10:58:00.000-07:002018-04-27T10:58:08.190-07:00Resilient and Vulnerable and True (I Hope)I'm writing now from a hotel room (a luxurious, thirtieth-floor hotel room, complete with a bathtub not sprinkled with plastic bath toys) in Chicago, where I landed early yesterday afternoon for a conference this weekend. Chris has approximately 45 weeks of field work and/or conferences this year, so I requested these few days to bask in the uninterrupted glory of a good night's sleep (or three).<br />
<br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/BiDYtkHHlwB/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
<div style="padding: 8px;">
<div style="background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 50.0% 0; text-align: center; width: 100%;">
<div style="background: url(data:image/png; display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;">
</div>
</div>
<div style="margin: 8px 0 0 0; padding: 0 4px;">
<a href="https://www.instagram.com/p/BiDYtkHHlwB/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Hello, beautiful city. Hello, beautiful healthcare advocates. I’m thrilled to be here for #HealtheVoices18 — kicking off bright and early tomorrow! ☀️ Follow along for updates! 🙋🏻♀️</a></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
A post shared by <a href="https://www.instagram.com/jencampisano/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Jen Campisano</a> (@jencampisano) on <time datetime="2018-04-26T23:57:18+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Apr 26, 2018 at 4:57pm PDT</time></div>
</div>
</blockquote>
<script async="" defer="" src="//www.instagram.com/embed.js"></script><br />
Bless him, Chris is holding down the fort during a teacher walk-out that by some estimates resulted in the largest march on our state capitol in Arizona's history yesterday. Hey, legislators, just fund public education already. It's in our state constitution and you've already been sued <a href="https://www.usnews.com/news/best-states/arizona/articles/2017-05-01/arizona-schools-to-lay-out-details-of-new-funding-lawsuit" target="_blank">many, many times</a> on this.<br />
<br />
But back to my hotel room. I am not here just for the fluffy bathrobes and overpriced room service.<br />
<br />
HealtheVoices is a conference that supports healthcare advocates across a spectrum of disease communities, from cancer to HIV/AIDS to diabetes to mental health. What I love about this gathering is the reminder that we all face so many of the same struggles -- and often even side effects -- even across very, very different afflictions. It reminds me of our collective humanity, and gives me hope watching people doing good things for each other. As one speaker put it this morning, when we stand up for each other, we are unstoppable.<br />
<br />
I've been to the HealtheVoices conference before, in 2015 by invitation and in 2016 as part of the conference's advisory panel. That year, I ended up in the emergency room at Northwestern Hospital because of chest pain shortly after the lung biopsy that changed my diagnosis (and my world, if I'm being honest). The chest pain was probably a mild panic attack, although I didn't know that at the time. I just didn't want to fly home if my lung was going to collapse mid-air.<br />
<br />
Last year, I was newly pregnant and skipped the conference. This year, they asked me to sit on a panel for a session on resilience. Did you read my last post? I am feeling far, far less than resilient at this very moment along my path to wellness than I've felt in awhile, but I'm going to show up and give it my messy best. I still shake when I tell my story. I still don't know exactly where to start or how to frame the work I feel called to do. When I'm asked by other attendees what I advocate for, breast cancer seems like an incomplete answer. <i>How much time do you have?</i> I want to ask them.<br />
<br />
Coincidentally, I just finished Brené Brown's <i>Braving the Wilderness</i> about what it means to truly belong, especially to belong to <i>oneself</i>. She wrote, "You will always belong anywhere you show up as yourself and talk about yourself and your work in a real way," which could be the tagline for HealtheVoices.<br />
<br />
I highlighted more passages than I typically do in a book, but one of my favorites is when she writes about courage and vulnerability:<br />
<br />
<blockquote class="tr_bq">
Most of the time we approach life with an armored front for two reasons: 1) We're not comfortable with emotions and we equate vulnerability with weakness, and/or 2) Our experiences of trauma have taught us that vulnerability is actually dangerous. </blockquote>
<br />
Uh, she might be on to something with that second one there. She continues:<br />
<br />
<blockquote class="tr_bq">
The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it's our most accurate measure of courage. </blockquote>
<br />
Here I go, to show up vulnerable and soft-bellied and as my truest self. I hope it looks like something resilient.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-ukljI1p_tYCnXfLUpDyk2rG1rulNm7LmB9JAM_diCT9MJnvGqLE4ZPCulSf29T8LLanH6ggu3C6a3z2Zno9HCXhVZNKpqGlJhC6cjhMO-vWQ-rGSoCE-Sih8UEr_IbzgdboirVh6deaH/s1600/IMG_0914.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="746" data-original-width="750" height="636" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-ukljI1p_tYCnXfLUpDyk2rG1rulNm7LmB9JAM_diCT9MJnvGqLE4ZPCulSf29T8LLanH6ggu3C6a3z2Zno9HCXhVZNKpqGlJhC6cjhMO-vWQ-rGSoCE-Sih8UEr_IbzgdboirVh6deaH/s640/IMG_0914.JPG" width="640" /></a></div>
<br />
And just to be clear, Janssen Biotech paid for my travel to this conference, but all thoughts and opinions are my own.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-50823159674893015432018-04-20T13:37:00.000-07:002018-04-20T13:37:04.387-07:00Go Home, Anxiety, You're DrunkNoelle turned five months old yesterday. Quinn asked if we could celebrate with a party, but I can see right through that ploy for cake. So I said we'd do one next month, perhaps with Funfetti cake. I might even spring for balloons and invite some people because it will be the end of the school year here in Arizona, and maybe our legislature will have acted by then to PAY TEACHERS WHAT THEY'RE WORTH and possibly increase per student spending, too. <i>That</i> would be cause for celebration. What? You don't celebrate your babies' 1/2 year birthdays when they coincide with hypothetical legislative victories?<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF-HIE-mu0onN1ZVCnDeyZKz4fjsvqPIbiOYsjjHgGGLftjraBycJpqa4wyAoIKc22MVO384cog5xpz26i60bzky92oSnl5BwhG2erUILA2qt9nSTyCBbdSXV-vDamREFuuMOt8LwHhqr3/s1600/IMG_0774.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF-HIE-mu0onN1ZVCnDeyZKz4fjsvqPIbiOYsjjHgGGLftjraBycJpqa4wyAoIKc22MVO384cog5xpz26i60bzky92oSnl5BwhG2erUILA2qt9nSTyCBbdSXV-vDamREFuuMOt8LwHhqr3/s640/IMG_0774.JPG" width="512" /></a></div>
<div>
<br /><div>
In the meantime, our teachers have voted to strike if the legislature hasn't acted by next Thursday, which I support 100%. I am surprised it took them this long, considering as a state we are $1 BILLION short of education funding compared to a DECADE AGO. Meaning there has not been an increase in education spending here in my son's LIFETIME. There are reports of rats in some classrooms, buildings are falling apart, and our teachers are grossly underpaid. </div>
<div>
<br /></div>
<div>
So I fully support our educators walking out until our governor signs adequate funding into law, but I will also be at a conference in Chicago starting next Thursday and unable to help with taking care of our children for a few days. SORRY CHRIS'S BOSS.</div>
<div>
<br /></div>
<div>
More on the conference soon, but this post is supposed to be about Noelle. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9V9U0QxifMNaucOwI9I7NBKy6AxOL9pGCBKo-5J-kkf4EtqtlRAnsXoV-n2cNrgnEjENIcpPWuvfDj5YkOu6DMB8DH-uo88SkWGhETpJ4zAJQgjPcuPPNqChacaiNqP8v1OHuXmBZZFcy/s1600/fullsizeoutput_3a69.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9V9U0QxifMNaucOwI9I7NBKy6AxOL9pGCBKo-5J-kkf4EtqtlRAnsXoV-n2cNrgnEjENIcpPWuvfDj5YkOu6DMB8DH-uo88SkWGhETpJ4zAJQgjPcuPPNqChacaiNqP8v1OHuXmBZZFcy/s640/fullsizeoutput_3a69.jpeg" width="480" /></a></div>
<div>
<br /><div>
For the grandparents and great-aunts and uncles reading: at five months, Noelle is still weighing in at the tenth percentile, the little peanut. We adore her, and at least once a week, I get teary-eyed at how lucky we are to have her, at how unlikely and miraculous it is that she's in our lives. Baby girl spends her days giggling at funny sounds, drooling until her shirts are soaked, watching her older brother like a hawk, <i>almost </i>sleeping through the night, and has rolling onto her side down to a science. She'll figure out rolling all the way over one of these days. I'm not worried. </div>
<div>
<br /></div>
<div>
Not about her development, anyway. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlx-O9KBv6y6ntf23XGkv2zoOnLmLKQhjKjMQWh_aD_gLzFFZdZVjpjzFX5fQK5AxxNhr6GogGG8Swua0lURlUZAPMjzX4pA3vYoqP-K9kUTezy4KOf6H_1IyVb6H7MGng4tg5EXhgdMrc/s1600/fullsizeoutput_3a6b.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlx-O9KBv6y6ntf23XGkv2zoOnLmLKQhjKjMQWh_aD_gLzFFZdZVjpjzFX5fQK5AxxNhr6GogGG8Swua0lURlUZAPMjzX4pA3vYoqP-K9kUTezy4KOf6H_1IyVb6H7MGng4tg5EXhgdMrc/s640/fullsizeoutput_3a6b.jpeg" width="480" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxw8mt89q6eR16U2KhyXKeLgH0Y4F2HAkiT0liUY5gJsYD-UmHnsh2f4ZzRQ4xri60nt-xoBz2JRkU_R35dNbyda4hTMF_WggojCrmo3vnUW-OX2GJRq8bhtapVf3fz2gE040AerO8vyjF/s1600/IMG_0838.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxw8mt89q6eR16U2KhyXKeLgH0Y4F2HAkiT0liUY5gJsYD-UmHnsh2f4ZzRQ4xri60nt-xoBz2JRkU_R35dNbyda4hTMF_WggojCrmo3vnUW-OX2GJRq8bhtapVf3fz2gE040AerO8vyjF/s640/IMG_0838.JPG" width="480" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0d1wwjtg89PwvJo8eVYVH2GZcw8T-dUUAuyOCDFkVrW0NZ33fy5oD8x45h4XYuRR-tf7OjyTNMyy-7O8yPpGsgtvKBQ0b9OIFQVVCyFpWQiNV9seSJdhfK8aGFvzQmCtqTNVKHt9z620u/s1600/IMG_0807.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0d1wwjtg89PwvJo8eVYVH2GZcw8T-dUUAuyOCDFkVrW0NZ33fy5oD8x45h4XYuRR-tf7OjyTNMyy-7O8yPpGsgtvKBQ0b9OIFQVVCyFpWQiNV9seSJdhfK8aGFvzQmCtqTNVKHt9z620u/s640/IMG_0807.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div>
On the other hand, I <i>have</i> been an anxious wreck the past couple of weeks leading up to this time period. At first, I couldn't figure out why. Some people talk about how the changing light around the equinox can exacerbate feelings of darkness or cause a certain tightness in your chest, but we are well past that point in the season. What I've been feeling is more than unease. It's more of a crippling foreboding that <i>something </i>terrible must be about to happen. That somehow, despite our five-year <strike>journey</strike> shit-show with cancer, we still got off too easy. </div>
<div>
<div>
<br /></div>
<div>
That perhaps we don't deserve these incredible moments with our little girl. YES, I KNOW THIS SOUNDS CRAZY. It also makes it really hard to parent happily and with enthusiasm right now. So what's going on with me?</div>
<div>
<br /></div>
<div>
The last time I had a five-month-old infant, I was diagnosed with cancer. </div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHvg4Yl1QT16fghKHCyWu-TiEqbqlSkEcw3SB_5uzGQIYoSBY0zpBCaUgjGyf_hEqPBobFqWzbOsKQCUL5wEviq9IXUJWT3W1Mf3yI4uZ9iDvlzdlupmrxAxh76UFUMnxHqB1hRcbMTsEU/s1600/IMG_0591.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHvg4Yl1QT16fghKHCyWu-TiEqbqlSkEcw3SB_5uzGQIYoSBY0zpBCaUgjGyf_hEqPBobFqWzbOsKQCUL5wEviq9IXUJWT3W1Mf3yI4uZ9iDvlzdlupmrxAxh76UFUMnxHqB1hRcbMTsEU/s640/IMG_0591.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo of Quinn at almost-5-months-old next to Noelle at the same age, in the same seat. My hand looks like a claw.</td></tr>
</tbody></table>
<div>
The simple typing of that sentence has me erupting in sobs, so clearly I have some processing left to do. So much for this post being about Noelle. <u>Related: I am actively accepting recommendations for therapists who take our insurance.</u> They are surprisingly difficult to find. </div>
<div>
<br /></div>
<div>
I worry about nearly everything lately, with abandon: violence at public schools, which admittedly is a very real fear shared by many, many parents these days; Quinn choking on an apple while I'm in the other room (hasn't happened, but could); whether my occasional night sweats are normal postpartum or a sign of lymphoma; if the dog has thrombosis (was just a scratch, says the vet, so I can cross this one off my list for now); and all kinds of other scenarios that alert me that my anxiety is on a bender right now. Chris tells me worry is rarely ever productive, which, sure, makes sense if you can consider these things <i>logically</i>. </div>
<div>
<br /></div>
</div>
<div>
Is this just some twisted version of survivor's guilt? A fear that history is bound to repeat itself? PTSD? I mean, I can diagnose myself all day long, but sometime soon I've got to stop fearing the past and worrying about the future, right? And contain my worry to very real things like under-funded schools and how to dress for a conference in Chicago this time of year. I mean, plenty of people have five-month-olds without the sky falling, or so I hear. Right?</div>
</div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-87837816803325541532018-03-30T08:23:00.000-07:002018-03-30T08:23:32.837-07:00Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: "calibri"; font-size: 12pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called </span><a href="http://magictreebreastcancer.com/" style="text-decoration: none;"><span style="color: #0563c1; font-family: "calibri"; font-size: 12pt; font-style: italic; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Magic Tree</span></a><span style="font-family: "calibri"; font-size: 12pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">. All opinions and thoughts are my own.</span><br />
<br />
How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.<br />
<br />
He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear. <br />
<br />
Wait until he finds out about this blog.<br />
<br />
Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?<br />
<br />
I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.<br />
<ol>
<li>What rang true again and again in our family was share age appropriate truth, but don’t overshare. </li>
<ul>
<li>a. For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. </li>
</ul>
<li>Only answer their specific questions. </li>
<ul>
<li>a. When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.</li>
</ul>
<li>Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.</li>
</ol>
<ol>
</ol>
I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.<br />
<br />
What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, <a href="http://magictreebreastcancer.com/">The Magic Tree</a>, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.<br />
<img height="640" src="https://lh3.googleusercontent.com/_2iup2nvkV2lVdfYV2CYrdcNeX1Q8v_09ZJWGfsx7EvtwBpUckuy527genhBFU-oSPJDkSqH8LnEg3ciaZpnXolDOwplzhH8s11_tPljwgEAlfbwKoutC_Xs_gKaBdl3TbNRI0Yy7fOKxoqAtA" width="582" /><br />
Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5p5pw-75GHhnC0CboaiPVS4-VAeQ0YkUt-4RHeouIkRgm9fLanqDbqpDP401UqzXjJguVqNlNILNJhgb5lTCaPu-sVc6wuleTjfmx3Gzs_Pq5d6cWH4HoGxnRRzqfoQpOKtv85W1uvkl4/s1600/IMG_0619a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5p5pw-75GHhnC0CboaiPVS4-VAeQ0YkUt-4RHeouIkRgm9fLanqDbqpDP401UqzXjJguVqNlNILNJhgb5lTCaPu-sVc6wuleTjfmx3Gzs_Pq5d6cWH4HoGxnRRzqfoQpOKtv85W1uvkl4/s640/IMG_0619a.jpg" width="480" /></a></div>
<br />
There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.<br />
<br />
<img height="337" src="https://lh6.googleusercontent.com/kdYIylsvpjbGkUziwQU6Jo6dh9Rwzxk0GfsrMQekqeb8Ko8ocGWsa0kCyzd7frRKRj2WvSWq9x6t5kCJAvuHGr1HYc98xkz9n3eyfDvXQcN-0DpnnkBp6KFoaFfOosCjljJr4yaxfh6EjcAarw" width="640" /><br />
<br />
The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).<br />
<br />
Even though I’m not in treatment for cancer anymore, I’m going to keep using <a href="http://magictreebreastcancer.com/">The Magic Tree</a> with Quinn to prompt our discussions of cancer, to help us both process what our family went through.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-39198730112750103822018-03-29T14:25:00.001-07:002018-03-29T14:25:37.037-07:00SevenDear Quinn-Love,<br />
<div>
<br /></div>
<div>
Earlier this month, you turned seven, and somehow for the first time, it wasn't bittersweet for me to see another milestone pass. When you woke up and gleefully announced, "I'm seven!" I celebrated along with you and happily made chocolate chip pancakes for breakfast. Finally, I no longer wonder if this might be my last birthday with you. The fear of cancer isn't as ever-present as it was for so long, though dammit if I don't have to be terrified of gun violence while you're at school now.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnf2jo0zSBHQW4oP8jY3MMVcIjJFFw4GhftHboJMsFdiXfFAAPNVptcQMVx3kpiBGyeYmPdBYyQOfVdIBUsxU1KjrWAwdtT4gB3goLjVJa4TqkGo86TSLS4tDhyphenhyphenlXb9ywYOCCFu7tiH-Z/s1600/IMG_0595.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnf2jo0zSBHQW4oP8jY3MMVcIjJFFw4GhftHboJMsFdiXfFAAPNVptcQMVx3kpiBGyeYmPdBYyQOfVdIBUsxU1KjrWAwdtT4gB3goLjVJa4TqkGo86TSLS4tDhyphenhyphenlXb9ywYOCCFu7tiH-Z/s640/IMG_0595.JPG" width="640" /></a></div>
<br /></div>
<div>
I asked if you’d miss being six and you said, “No,” but then quickly added, “well, maybe a little because it’s the year I became a brother.” Our lives got flipped upside down AGAIN this last year, but you couldn't have been happier to learn you'd be getting a sibling. "This is the best gift EVER!" you exclaimed when we told you over pink cupcakes. And because it's you, you actually meant the baby growing inside of me, though you were excited about the cupcakes, too. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvHaoHDcA4oZWQiai5-AXjVw_oBDq00E91vqhDHxTjxkKr40JdY3xTqUcCM6AR4KSW01JBiwBxvUFbdIbIjNPbOHFnd4A41i7NftDuQ2_JBIQcdmGiJrMATq0tjILfsnmWmWN6O3wWVdn/s1600/IMG_4979.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvHaoHDcA4oZWQiai5-AXjVw_oBDq00E91vqhDHxTjxkKr40JdY3xTqUcCM6AR4KSW01JBiwBxvUFbdIbIjNPbOHFnd4A41i7NftDuQ2_JBIQcdmGiJrMATq0tjILfsnmWmWN6O3wWVdn/s640/IMG_4979.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYXw6IyQnzG9YXPIW3ihtYy2QnehvbRkzea4ti7RyHh-LU98JEtpa0r1rAszoeuVeOLbsHa_zH0My5fva060lRXdVpOVfp4j3voGofLPlaGdzO1cMQYMHi5Q4938u7Ql8yliLv55oMF5r5/s1600/IMG_4995.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYXw6IyQnzG9YXPIW3ihtYy2QnehvbRkzea4ti7RyHh-LU98JEtpa0r1rAszoeuVeOLbsHa_zH0My5fva060lRXdVpOVfp4j3voGofLPlaGdzO1cMQYMHi5Q4938u7Ql8yliLv55oMF5r5/s640/IMG_4995.jpg" width="640" /></a></div>
<div>
<br /></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1c9XjwjtyborzPpppNKewHMD7HUFyangZmSDvufaUx5mv0V7MkbVojEK1maSWHxu5FzsYuHOp-YdIluNUPs0SpzCe8iN0rANhnsXWu8ggufOPqi1gJqd0GOkdGpMtZS4hADI3q9Rstm0x/s1600/IMG_0500.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1c9XjwjtyborzPpppNKewHMD7HUFyangZmSDvufaUx5mv0V7MkbVojEK1maSWHxu5FzsYuHOp-YdIluNUPs0SpzCe8iN0rANhnsXWu8ggufOPqi1gJqd0GOkdGpMtZS4hADI3q9Rstm0x/s640/IMG_0500.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Watching you become a big brother has filled my heart more than I ever thought possible. You ask at least three times a day to hold your sister, and you play games like "I spy" with her in the car, making up what she might be spying based on what you've learned about how far she might be able to see. <br />
<br />
“I’m proud of you,” I reminded you the other night.<br />
<br />
“But I’m even more proud of you,” you said, and then added: “Even though you don’t do anything, really.”<br />
<br />
Oh, child. I want to rage against that statement but I am too exhausted. And also it makes me laugh. I hope someday you know I've done everything I can to make your childhood as well-adjusted as possible, despite getting off to a rocky and terrifying start.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRlHNFE8kOCjx89yc0-bo63G0xReBqC3TXCz5iYkPjapL49CPSHRvK2DZvJy_e30nAstSzPFEIXjUhHweO-gqaQrgWhoArQmSxylTRVGktvS71CZHgD1PBLEnIX3aNc8E5m09FOhXJH3hm/s1600/Campisano_highres-7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRlHNFE8kOCjx89yc0-bo63G0xReBqC3TXCz5iYkPjapL49CPSHRvK2DZvJy_e30nAstSzPFEIXjUhHweO-gqaQrgWhoArQmSxylTRVGktvS71CZHgD1PBLEnIX3aNc8E5m09FOhXJH3hm/s640/Campisano_highres-7.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc5MyCKJsDXEDeuPpgSLOrt8LdmAUr_JZtGrL6Fb9_hhc4yftAGAABE9DAjzMhXLwZ84XqWMYQpIGt4n7sizfIJ7pobQFyKYBoRu31OHG6Ii2w8dknDpx4x-u0iIwPFbf4mtSDcWjQ9q7I/s1600/IMG_0634.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc5MyCKJsDXEDeuPpgSLOrt8LdmAUr_JZtGrL6Fb9_hhc4yftAGAABE9DAjzMhXLwZ84XqWMYQpIGt4n7sizfIJ7pobQFyKYBoRu31OHG6Ii2w8dknDpx4x-u0iIwPFbf4mtSDcWjQ9q7I/s640/IMG_0634.jpg" width="480" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhejspZvIV-gUHL-_cScU-PX_SL2qZqjesy090WqOZf6n8FBVZOs4osjqxmIQ6UWCgWQqGEhmC0lPe-s5zuyN-7gJzDJ-2mFo9tH8xnZ0TqAfG62kUY6bbfniE8bn6xTvqVKQzk8UTaEj9y/s1600/IMG_3320.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhejspZvIV-gUHL-_cScU-PX_SL2qZqjesy090WqOZf6n8FBVZOs4osjqxmIQ6UWCgWQqGEhmC0lPe-s5zuyN-7gJzDJ-2mFo9tH8xnZ0TqAfG62kUY6bbfniE8bn6xTvqVKQzk8UTaEj9y/s640/IMG_3320.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxP2assmdKYEtMZ6sD2P5GsbV1XR6TwQ6RndxXHXOWFO72M0dVZWrTUt4zzcvuvfh6fH74xXNkIzs-iXKsrARvGT5lCdSI_jT5p_pgh4WlyXNf_2MIClRLMa_KMdvc2w3RoPHbIAMm2e7q/s1600/IMG_3341+2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxP2assmdKYEtMZ6sD2P5GsbV1XR6TwQ6RndxXHXOWFO72M0dVZWrTUt4zzcvuvfh6fH74xXNkIzs-iXKsrARvGT5lCdSI_jT5p_pgh4WlyXNf_2MIClRLMa_KMdvc2w3RoPHbIAMm2e7q/s640/IMG_3341+2.JPG" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB1g5LkEddlCuV71uQtmeZh46XYc-WRRHOYxYUEV439PpSYD0oFuSvCBRwKRToc9_UAZw3sZqN1fsjC8-jaWxqoiRZwqa1sAtKSb3eov8ZsQ1BCTGofG712WYnMXRd6GUPJ3dRF6yKeUdu/s1600/IMG_3350.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB1g5LkEddlCuV71uQtmeZh46XYc-WRRHOYxYUEV439PpSYD0oFuSvCBRwKRToc9_UAZw3sZqN1fsjC8-jaWxqoiRZwqa1sAtKSb3eov8ZsQ1BCTGofG712WYnMXRd6GUPJ3dRF6yKeUdu/s640/IMG_3350.JPG" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrmGvOz6kR0MpO1H4fSqVmTDETLCWL4h3dtEXCwYkvHoyRyq5lbow2wqKjSIxG_JOHYtONx3ZLxJMGjJeQtZCEEhVPPL6LiIY4QEbj2ffNgHIjWIk207woPF-3SA_cwis6yQYg1sMyzL5n/s1600/IMG_3589.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrmGvOz6kR0MpO1H4fSqVmTDETLCWL4h3dtEXCwYkvHoyRyq5lbow2wqKjSIxG_JOHYtONx3ZLxJMGjJeQtZCEEhVPPL6LiIY4QEbj2ffNgHIjWIk207woPF-3SA_cwis6yQYg1sMyzL5n/s640/IMG_3589.JPG" width="640" /></a></div>
<br /></div>
<div>
“Let’s be penguins,” you said to me as I laid down next to you a few weeks ago. “What?” I smiled. “They snuggle to keep each other warm,” you explained. And so we snuggled because it was an unusually cool winter in Phoenix and because I will always love lying down next to you listening to your thoughts, listening to you breathe. I am as reluctant to give that up as you are to give up your iPad when you're watching the Best All Time Football Plays on kids' YouTube.<br />
<br />
It seems as if you are either watching (or playing) sports or reading all the time now. It's March, and you've embraced everything about basketball finals, calling out favored teams and star players like you've followed these games for years. I swear, you could have a career as a sports announcer right now. The other day, you asked, "Mom, what does a person do if they don't get drafted by the NFL?"<br />
<br />
"Whatever else they want, buddy. You could be a scientist, a teacher, an artist..." I started to explain.<br />
<br />
"Well, I guess I better get drafted because I have no idea what else I'd want to do!" you replied.<br />
<br />
"Honey, you're seven. You have a long time to figure it out," I tried.<br />
<br />
"I just hope I get drafted by a team I <i>like</i>," you continued.<br />
<br />
"Me, too, kiddo," I conceded.<br />
<br />
We read a bit together at night — right now, <i>A Wrinkle in Time </i>or the <i>Captain Underpants </i>series. You're devouring these chapter books, and I love seeing you get lost in these fictional worlds.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXmrnciGd4uoYoWzrcgZrqhgP1IlXQ873cKGsgRL8BduQny2qYK-3-1_c7pWzhOT5jW5mO7AqON0c3yHCwjcqCgqsGn6nmw79OAYqAC5SFDteUOfCFn11ajOcsps_ad8XVi73OD0W1XJOl/s1600/IMG_0506.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXmrnciGd4uoYoWzrcgZrqhgP1IlXQ873cKGsgRL8BduQny2qYK-3-1_c7pWzhOT5jW5mO7AqON0c3yHCwjcqCgqsGn6nmw79OAYqAC5SFDteUOfCFn11ajOcsps_ad8XVi73OD0W1XJOl/s640/IMG_0506.jpg" width="480" /></a></div>
<br />
As I remind you it's lights out at night, I tell you I love you more than anything.<br />
<br />
“I love you even more than that,” you respond.<br />
<br />
“I don’t think that’s possible,” I say.<br />
<br />
“But it is...” you chime.<br />
<br />
And if it seems like this is all too sappy to be true, that’s only because someone hasn’t met you yet. You are all heart, my sweet boy.<br />
<br />
Don’t get me wrong, you’re also stubborn about trying new foods, clingy at bedtime, and slightly over-the-top pouty when you lose at a board game. But I still think you’re perfect.<br />
<br />
To which I'm sure you'd say, "Nobody's perfect, mom."<br />
<br />
I won't concede on this one.<br />
<br />
I love you, Quinn-Bug. Happy (belated) seventh birthday!<br />
<br />
Love,<br />
Mom<br />
<div style="color: #454545; font-family: 'Helvetica Neue'; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-77674751003641344202018-01-29T23:01:00.000-08:002018-01-30T13:50:55.903-08:00AbundanceLast weekend marked six years since my bilateral mastectomy. I still remember waking up from surgery feeling like I'd done a thousand push-ups, like an elephant was sitting on my chest, like a hole had been carved where fullness once had been. I remember tightness and pressure and emptiness more than pain. I remember being terrified to peek under the bandages. I remember feeling numb. Feeling devastated. Feeling relieved (because, I thought, maybe I was done with this disease. Spoiler: I wasn’t.)<br />
<br />
***<br />
<br />
If you’ve been with me here long enough, you’ll recall there was <a href="http://www.boobyandthebeast.com/2011/09/humbled.html" target="_blank">an outpouring of support</a> when I was diagnosed with cancer more than six years ago. Of course there was. People, I still believe, are at their core generous and kind and wanting to help in a crisis (or when miracles happen, too) . There were meals delivered and organized for months, and I still crave my sister-in-law Tracee’s stuffed shells — which is saying a lot considering my memory of them is tied to recovering from chemo. Friends and family dropped in to babysit baby Quinn, sometimes dropping everything on a moment’s notice just so I could lie in the fetal position on my couch, trying not to vomit, memorizing the pattern in the charcoal fabric. Other friends flew in for cross-country visits, and then there were<a href="http://www.boobyandthebeast.com/2011/09/hair.html" target="_blank"> those special women who cut off and donated their hair</a> to make the wig I wore for all of 2012 and a good part of 2013. I was blown away by all of it, by all of them.<br />
<div>
<br />
And then <strike>four</strike> -- ha! I was feeling ambitious about getting this post out -- ten weeks ago now, I gave birth to a baby girl. The magic of that in itself is for another post, probably after I’ve gotten more than four hours’ sleep in a row. But in my wildest dreams, I never imagined this kind of miracle could be possible after my diagnosis, after two years in chemically-induced menopause, after having my breasts removed that January six years ago. Our friends and colleagues have again swooped in to lift us up, to help us create a nest for our baby girl, to keep our older child entertained, to give us love and food and diapers in almost equal measure.<br />
<br />
You'd be weeping on a daily basis, too. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgTpquqdCEmCNutbhwlFI-tqhkyqlFIc7Bo01pUlHiql22KyxNQg55QJudjxQX86Hef3VAJgWRPftWjyc_TOZoG3vvYkkRQx2cdP_M-GsyjczeE5SGBh_JxDAL6b44neqW2oPegugZZ92i/s1600/IMG_4841.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgTpquqdCEmCNutbhwlFI-tqhkyqlFIc7Bo01pUlHiql22KyxNQg55QJudjxQX86Hef3VAJgWRPftWjyc_TOZoG3vvYkkRQx2cdP_M-GsyjczeE5SGBh_JxDAL6b44neqW2oPegugZZ92i/s640/IMG_4841.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZYxitRtYfuxMkBtT_qJ01DqVxwbpheN-WklHYqyOAoU2nRf3bThxkbWtytG5Xq111zIcI0gJb0qXUqzfWCKZQwKJ2tt51K_5T-pb6HFoi3iWPBLfpJZX-lKGcY19YGrbdrCI40-9_nHu/s1600/IMG_4879.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZYxitRtYfuxMkBtT_qJ01DqVxwbpheN-WklHYqyOAoU2nRf3bThxkbWtytG5Xq111zIcI0gJb0qXUqzfWCKZQwKJ2tt51K_5T-pb6HFoi3iWPBLfpJZX-lKGcY19YGrbdrCI40-9_nHu/s640/IMG_4879.jpg" width="426" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggVIosH46Ka6w3NGNxqveh9O3_yIDnwHeeXcaJhYr8u1cTVaXvzijBKMTRgvzgxig6t0tq7b_EyuaxqNksr7HfLyiz8njd5EhhGWEywa_q7GdMQ-jf9QklgodXfKowhcSQyHY0PaaMl7HP/s1600/IMG_4901.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggVIosH46Ka6w3NGNxqveh9O3_yIDnwHeeXcaJhYr8u1cTVaXvzijBKMTRgvzgxig6t0tq7b_EyuaxqNksr7HfLyiz8njd5EhhGWEywa_q7GdMQ-jf9QklgodXfKowhcSQyHY0PaaMl7HP/s640/IMG_4901.jpg" width="426" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu0XUfjBXJvYvB_3X-7joBuR-vRRx2FpoWl5vvjAgGQ5A5pLRaAxGs9p3bef3GE0gDvMXMTbbc66o62hcWz3Ta9b9hmOyzXnIhYqRrd7FHRSv3jFMYUBFCGqPktv9iUrDbR5xaFEYjOWo3/s1600/IMG_4908.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu0XUfjBXJvYvB_3X-7joBuR-vRRx2FpoWl5vvjAgGQ5A5pLRaAxGs9p3bef3GE0gDvMXMTbbc66o62hcWz3Ta9b9hmOyzXnIhYqRrd7FHRSv3jFMYUBFCGqPktv9iUrDbR5xaFEYjOWo3/s640/IMG_4908.jpg" width="426" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFQGVRbCUB5U0I6iYMmfi8kO-cv0ykoq0Ck8JG0r8alwMxS9Jl0qoqOzMPUdp5d-RmOJ3rrHQxVG-D-b3-PrYI1tKk2f3Rnp9j8O6b7v4MmvAmF8g4_oF5e1XwkAA3AWsAZqEGNB37J2yM/s1600/IMG_5002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFQGVRbCUB5U0I6iYMmfi8kO-cv0ykoq0Ck8JG0r8alwMxS9Jl0qoqOzMPUdp5d-RmOJ3rrHQxVG-D-b3-PrYI1tKk2f3Rnp9j8O6b7v4MmvAmF8g4_oF5e1XwkAA3AWsAZqEGNB37J2yM/s640/IMG_5002.jpg" width="640" /></a></div>
<div>
We named her Noelle. We think she's perfect.<br />
<br />
Also? These photos are everything. My talented, beautiful friend <a href="http://www.littlethingsphotoco.com/" target="_blank">Danya</a> offered this photoshoot to me as a gift at my baby shower. I can't stop staring at them.<br />
<br />
And you know how I met Danya? Stupid, stupid cancer. She read my blog, realized we lived near each other and have boys about the same age, and after months of intermittent messaging, one night we randomly sat next to each other at a pizza restaurant in my neighborhood and finally made solid plans to hang out. Our boys hit it off immediately, and so did we.<br />
<br />
Check out her widely-shared video telling her story about being diagnosed with metastatic breast cancer in an effort to save the Affordable Care Act last summer. Thankfully, she's doing well right now and we are overdue for a champagne toast to celebrate both of our recent clean scans.</div>
<div>
<iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="315" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FCongressmanJoeKennedyIII%2Fvideos%2F1779710425483844%2F&show_text=0&width=560" style="border: none; overflow: hidden;" width="560"></iframe>
</div>
<br />
<div>
***<br />
<br />
Even before Noelle arrived, my friends Jenn and Christine rushed over with breakfast one Sunday morning to help me launder baby clothes and set up the nursery when I thought I was going into labor two weeks ahead of schedule. Turns out I’d just peed my pants a little, and I will always blame it on: I was carrying low and Noelle's head was pressed into my bladder for weeks on end. The silver lining was that I finally got my hospital bag packed and figured out where in the house the newborn diapers had been stashed during our construction of the nursery.</div>
<div>
<br />
Chris's colleagues gave us a hand-me-down rocking chair, bassinet, baby carriers, and an infant bathtub. Other mom friends passed down their little girls’ gently used clothing. A pediatrician friend pulled together a sampling of baby meds and ointments we might need in the coming months.<br />
<br />
But far and away the thing that bowls me over day after day (and night after night) is the donated breast milk we’ve been able to feed our little girl. A friend with a 4-month-old gave me a few bags of extra milk; a couple of women who read my story in Facebook groups sent a few <i>hundred</i> ounces from Chicago, North Carolina, and Texas; another breast cancer survivor mom put me in touch with one of her former donors who passed along 50 bags worth of frozen pumped milk; and my pediatrician friend secured a couple of other local donors for us. The hospital where I delivered gave us donor breast milk while we were there and a few bags to take home with us.<br />
<br />
Because of the infinite generosity of moms and their hours of pumping (so that women like me can feed our babies what's best for them), for six weeks my daughter’s primary source of food was breastmilk. Another box arrived from my college friend Katie today, and so baby girl will have another immunity boost, right in the heart of flu season.<br />
<br />
A couple of times in the early weeks, when baby girl would turn her head into my chest, seeking food from me and my absent breasts, I wept. I felt inadequate. I cried to Chris, "I can't give her what she needs," which is ridiculous because we can still afford formula. But my hormones were running amok and a part of me will always carry some guilt that my body did this -- did cancer -- to <i>itself</i>.<br />
<br />
My occasional feeling sorry for myself (and my daughter) notwithstanding, we have been abundantly fortunate. (Understatement of forever.) This village of women in my life, this band of mothers, has collectively pumped for hours upon hours and generously passed along their liquid gold so that my baby can sleep better, have fewer allergies, and maybe even avoid many illnesses. Perhaps between that and some Congressionally-funded research, she won't have to worry about breast cancer in her lifetime. One can hope. The future <i>is </i>female.<br />
<br />
For now, we are mesmerized, in awe of our new family member, and beyond grateful for the abundance this community gives to us.<br />
<div style="color: #454545; font-family: 'Helvetica Neue'; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
</div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com0tag:blogger.com,1999:blog-7238780007621149539.post-38785075942878859702017-11-13T20:31:00.001-08:002017-11-13T20:31:52.406-08:00On Death + Healing + A Little Bit of FootballI haven't talked to many kids about death. But kids, I find, are generally equal parts curious and blunt. My six-year-old, Quinn, casually asked me last weekend: "What if my baby sister stays in your belly until my birthday, in March?"<br />
<br />
"Then I'd be in some kind of record book," I said. "I promise she'll be here in the next couple of weeks."<br />
<br />
"What if a mom was pregnant for 5,000 years?" he wanted to know. Then, quickly, "I guess then both the mom and baby would be dead by then."<br />
<br />
In the abstract, death is a concept that isn't yet scary to him -- or wasn't, until very recently. He wants to know how old the oldest person on Earth is, why people can't live to be 600 years old, and very occasionally, he'll tell me he's worried we might need to move to another planet because ours is getting too hot. To be fair, we live in Phoenix, where it was still hovering around 100 degrees the week before Halloween. AND his dad is a climate scientist/geologist who studies the correlation between climate change and human evolution, so that could contribute.<br />
<br />
Quinn is curious about our collective mortality, but death hasn't seemed imminent in his life (other than my bout with metastatic breast cancer, which he doesn't remember very well, and my mother-in-law's passing away more than two years ago -- also not a strong memory for him).<br />
<br />
If you follow me on Instagram, you might have seen that Quinn had his first stitches three weeks ago. Because October wasn't awful enough already.<br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-version="7" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
<div style="padding: 8px;">
<div style="background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 62.5% 0; text-align: center; width: 100%;">
<div style="background: url(data:image/png; display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;">
</div>
</div>
<div style="margin: 8px 0 0 0; padding: 0 4px;">
<a href="https://www.instagram.com/p/Bap_jcQgzgu/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">There's no filter that makes this less heart wrenching. 💔 He's okay but the fear of seeing my baby's head split open is something I don't know if I'll ever forget.</a></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
A post shared by Jen Campisano (@jencampisano) on <time datetime="2017-10-25T03:36:42+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 24, 2017 at 8:36pm PDT</time></div>
</div>
</blockquote>
<script async="" defer="" src="//platform.instagram.com/en_US/embeds.js"></script>
Chris was at a geology conference in Seattle, and Q and I were watching Monday Night Football. Quinn wants to be an NFL player when he grows up.<br />
<br />
He loves everything about the game, and cheers for teams as wide-ranging as his flag football team the Patriots to the Seahawks because they're my team to the Cardinals because Arizona to the Eagles because his favorite color is green. Three weeks ago, Mack Hollins, a rookie wide receiver for the Philadelphia Eagles, caught his first career touchdown pass, and in Quinn's estimation, nailed his end zone celebration.<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/HfJQf2VP38A" width="560"></iframe><br />
Quinn tried to recreate the dance on his knees, on our couch, and, in a rare moment for him, he lost his balance. In what seemed like slow motion, he fell, head-first, and smacked into a leather-covered ottoman storage cube, then landed head-first on the floor. I didn't think it would be that bad because the cubes are padded on top. But he hit the unpadded, stitched corner, and when I scooped him off the ground, his forehead was gaping open and blood soaked my t-shirt. While I quickly set him down and assured him he'd be okay (as I tried not to show him how terrified I was and ran to the kitchen for an ice-pack and a towel), he kept repeating through his tears, "I'm so scared, I don't want to die."<br />
<br />
My heart felt like it was being twisted and wrung out like an old dishrag in that moment.<br />
<br />
I promised him he wouldn't die. I called 911 and just a few minutes later, several firemen stood in our living room and assured me he would be fine but also that he'd need stitches. "Can you do them here?" I asked, naively. They don't offer that service, apparently. We went to the emergency room at Phoenix Children's, where several hours later, Quinn got five stitches.<br />
<br />
I'm not sure at what point he calmed down -- though it came more quickly for him than me. I was still sobbing about his head and the wrenching ache in my heart days later, always at night when the house was quiet and my brain started racing again. I am more okay now, though Quinn's words have been replaying in my head the past few days.<br />
<br />
***<br />
<br />
My friend <a href="http://cultofperfectmotherhood.com/all-souls-day-november-2nd-in-the-2017th-year-anno-domini/" target="_blank">Beth Caldwell</a> died ten days ago. Her daughter is Quinn's age, give or take a few months. Beth's husband, J, has been posting updates (up until his FB account was blocked because of a troll). Their kids are having trouble sleeping. As someone who still snuggles with Quinn every night until he falls asleep (and lately, I'm falling asleep with him), I get it.<br />
<br />
How can you assure children that there's nothing to be afraid of after dark when their world has just imploded?<br />
<br />
I haven't known how to write about Beth, but at some point I figure I needed to, whether I know what to say or not. In the last ten days, as Beth's husband points out on Twitter, <i>this country</i> has lost another 1,130 women like Beth to metastatic breast cancer. 113 every damn day. In the last ten days, Beth's husband had to live through their fifteenth wedding anniversary without his lovely bride.<br />
<br />
And while we in this community are all too sadly familiar with grieving and death and losing our friends, there are some people who are just different in their scope and impact and the vast vacuum of emptiness felt in their absence. Beth was one of those women, and even now, it is so hard for me to write about her in the past tense. I told her husband that she and I used to joke we wished we'd met in law school, or over bourbon -- anywhere but because of cancer. Stupid fucking cancer.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEint4W6CuAyW-eEno7JGKwm-jdMoruC1p4uRgIqkI73OHBgmN5y4lqwnrEcRPUs0Z2x47i7AlT9dVDk_n24NNyJpi-5z58rswRay4kAO72ou44y4pDEZdzyt-iNYy2anvAwAknLQWod7Sm5/s1600/20525712_10213642363271679_8562604250820802902_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEint4W6CuAyW-eEno7JGKwm-jdMoruC1p4uRgIqkI73OHBgmN5y4lqwnrEcRPUs0Z2x47i7AlT9dVDk_n24NNyJpi-5z58rswRay4kAO72ou44y4pDEZdzyt-iNYy2anvAwAknLQWod7Sm5/s640/20525712_10213642363271679_8562604250820802902_n.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes, you've seen this photo before, but - regrettably - it's the only one I have with Beth. Note to self: take more photos.</td></tr>
</tbody></table>
I know I'm not the only one who feels this way about Beth. She was a friend to so many of us, and a fierce advocate who led by example. She was whip-smart, even when she thought she was at her worst. And as I advocate in the years to come, I will always ask: would this have helped Beth? Will it do more to keep the Kelly's, April's, Danya's, Dana's, Rebecca's, Jennie's, Nicole's and Kisha's in my life alive? In other words, does it live up to Beth's standards?<br />
<br />
I don't know what else to do to carry the torch she lit.<br />
<br />
***<br />
<br />
I woke up at 5:30 this morning to our meowing cat scratching at our temporary bedroom door. Temporary since we are <i>still</i> in the throes of a remodel because... I don't know? Paint is more complicated than I could have imagined? Even without the hungry cat, I'm not sleeping well. I'm 39.5 weeks pregnant. Waking up forty-five times a night is nature's way of preparing you for the sleeplessness of a newborn, blah blah BLAH. Whatever. I just want to stop peeing every two hours (or every time I sneeze).<br />
<br />
This morning, I read through the news and my Facebook feed. I noted that the forecast has us at 86 degrees today. I saw that Beth's husband's Facebook account has been suspended because some terrible person reported him for who knows what... Grieving too hard? And I don't know how to stop being angry.<br />
<br />
But then Chris woke up and we had coffee together. And Quinn woke up and I remembered him singing "Hush Little Baby" to my belly last night, how my heart finally felt un-corkscrewed. There was no longer a tornado brewing in my chest. Instead, it swelled to the fullest it has felt in weeks. As the Grinch would say, it near tripled in size, and love poured down my cheeks.<br />
<br />
***<br />
Quinn's head is healing. There is a pinkish scar that extends for about an inch above his left eyebrow. I massage it gently a couple of times a day. He's no longer asking me about death. His flag football team has their playoffs this weekend, and baby-willing, I'll be there to cheer him on.<br />
<br />
I wish some calendula or coconut oil and a weekend of football could heal every kid's pain and scars so easily.<br />
<br />Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com1tag:blogger.com,1999:blog-7238780007621149539.post-90689938436939088402017-10-31T12:28:00.000-07:002017-10-31T12:28:45.462-07:00What Are Breasts For?As October winds down and we prepare for Halloween celebrations tonight, I thought I'd share some final thoughts on the month. And on breasts in particular.<br />
<br />
***<br />
<br />
The librarian at Quinn's school is a friend. She was his music teacher in preschool, and now I see her when I'm volunteering as garden mom or at PTA meetings. All of which to say that we're Facebook friends, as well as real-life friends, and we often get fired up about similar things. <strike>Yesterday</strike> a few weeks ago (because I'm spending all my energy right now on growing a human and also a remodel project to add a nursery so these unfinished posts get stuck here for a month), I saw a post on my friend the librarian's Facebook page regarding a book.<br />
<br />
The book seems to be about talking to boys about puberty and other coming-of-age concerns. Another mom had seen this, was rightfully pissed, and was asking whether our librarian knew anything about this series or why the editors had been such dolts (I'm paraphrasing).<br />
<br />
Here is a screenshot.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5QyrY6X0nUAjdzucKMhEjczJqMjpEY2jitXirdipQ1tw2B0wLgaskLgSy18K2m9KHv1qxfkUVA7vGAySp9LGY6c1R-bl4fXKoKVIEKfHYAxGMrofp5_QarjVgil_RKYZCwJ34GaAsWusL/s1600/21192886_284591155351199_1173974846562903322_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5QyrY6X0nUAjdzucKMhEjczJqMjpEY2jitXirdipQ1tw2B0wLgaskLgSy18K2m9KHv1qxfkUVA7vGAySp9LGY6c1R-bl4fXKoKVIEKfHYAxGMrofp5_QarjVgil_RKYZCwJ34GaAsWusL/s640/21192886_284591155351199_1173974846562903322_n.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
First - <i>girls </i>have breasts to make milk for babies? No. <i>Women </i>do. Girls shouldn't be having babies, and we shouldn't perpetuate that notion in a book aimed at BOYS. But that is hardly the only thing that makes this page offensive. The second reason for girls having breasts, according to Alex Frith for this Usbourne series, is "to make the girl look grown-up and attractive," and virtually all breasts can do this. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Hold on while I pick the keyboard keys off my forehead. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Am I the only one offended? Is it because my real breasts have been gone for nearly six years now? DO I NO LONGER LOOK GROWN-UP?!</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I've been thinking so much about my breasts this month. Not only because it's October and WE ARE ALL AWARE OF BREAST CANCER ALREADY, but also because I'm going to have a baby sometime in the next few weeks. Side note: both Pinktober and this remodel have seemed to drag on FOREVER, which is weird because at the very same time, this pregnancy has zipped by in what seems like an instant. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
When Quinn was born, I breastfed from the start, right up until I had to begin chemo a few days before he was six months old. I loved that bonding time with my baby boy, his little face turned up to mine as he slurped and suckled. I was lucky. Nursing didn't hurt. My nipples weren't cracked or sore. I craved Blue Moon and was thirsty all the time, but nursing was relatively easy for me. It's part of why I knew it was bullshit when my doctor told me the lump in my right breast was mastitis. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhERGZQGeSrkwLEns3OGpWLks736iABVvsQBrJQ9ub1pMXhaWC-lBAEyNBm3wKh7lEfuCtSEh36K8DBkFBHFEb4AVR6viwGnKT8nIgbzYPwWYDA_7cmoXeMZCs-GgKNiQnfzD6iuyvUcD8G/s1600/IMG_0717.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhERGZQGeSrkwLEns3OGpWLks736iABVvsQBrJQ9ub1pMXhaWC-lBAEyNBm3wKh7lEfuCtSEh36K8DBkFBHFEb4AVR6viwGnKT8nIgbzYPwWYDA_7cmoXeMZCs-GgKNiQnfzD6iuyvUcD8G/s640/IMG_0717.JPG" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt1nbxamI6MttdvOKoNUlkURratl-JY7FzkR4d28VHbaJ4WGyyiWsSbld-bDsxnvrhsjCE4xJGIsDVGD6zK1ezoTUB6C9DgKTwhcLVXLv20yPBi37hAkZkkC1Et1X7S2J5xhe8JVhFOB98/s1600/IMG_0893+copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt1nbxamI6MttdvOKoNUlkURratl-JY7FzkR4d28VHbaJ4WGyyiWsSbld-bDsxnvrhsjCE4xJGIsDVGD6zK1ezoTUB6C9DgKTwhcLVXLv20yPBi37hAkZkkC1Et1X7S2J5xhe8JVhFOB98/s640/IMG_0893+copy.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I was in awe of my body and what it was able to accomplish. I GREW a human! And then made food for him for HALF A YEAR! It blows my mind what women can do. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
And again, I'm growing a human! I have the fatigue and tell-tale waddle and peeing my pants every time I sneeze to prove it. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
But my breasts aren't tender as they prepare to feed my baby this time around. I no longer have nipples. Even my doctor occasionally forgets and asks me about breastfeeding, but short of me regrowing a boob like a lizard regrows its tail, nursing from my fake boobs is not going to happen.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I have heard that there is a possibility <i>some</i> milk will still come in in the days after I give birth, and I might have painful <i>lumps in my armpits</i> where a few milk ducts may remain. If that happens, I'm tempted to ask for more surgical drains to be placed -- like I had after my mastectomy -- to collect some of that liquid gold. Brilliant, right? I am also so grateful I was forewarned. That would be one terrifying surprise to wake up to, a whole bunch of painful lumps in my armpits after five years of thinking I was going to die of cancer.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I've had some wonderfully generous women step forward to offer me their extra breast milk, and the hospital has assured me our baby will have breast milk while we're at the hospital. Also, while I know "breast is best" when it comes to feeding newborns, plenty of babies do just fine on formula. Still, it saddens me to my core that I won't be able to feed this baby girl the way I was able to feed Quinn. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
On the other hand: no excuses, Chris. Those middle-of-the-night wake-ups are FAIR GAME for both of us. Mama just might get some sleep this time around. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
***</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div>
Beyond my own breasts, October has been full of the usual tired pink crap, though I have a lot of adorable pink stuff coming into my life right now so I can't totally hate on the color itself.<br />
<br />
Yesterday, my dad sent me <a href="https://www.nytimes.com/2017/10/28/opinion/sunday/breast-cancer-is-serious-pink-is-not.html?_r=1" target="_blank">an article</a> about the frivolity of the pink culture that emerges every October, even as it is meant to say to us with or beyond breast cancer that we are celebrated and supported. The whole article is worth reading, but two lines in particular struck me:<br />
<span style="background-color: white; color: #333333; font-family: "georgia" , "times new roman" , "times" , serif; font-size: 17px;"><br /></span>
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , "times" , serif; font-size: 17px;">"The association of femininity and breast cancer is pernicious, because it genders the disease, meaning that a diagnosis of breast cancer marks patients as women first, people second. It implies that our womanliness is diseased, not our bodies."</span><br />
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , "times" , serif; font-size: 17px;"><br /></span>
Like the article's author, I didn't initially associate my diagnosis and the ensuing surgeries (and chemically-induced menopause, and hair loss, and days on the toilet post-chemo, et cetera, et cetera...) with a loss of my womanhood, though as time went on, there were certainly periods when I felt less than feminine. Instead, like most people facing CANCER, I was worried about my life. Thinking I was metastatic for years didn't help, since stage 4 is the only stage of the disease that kills.<br />
<br />
Being surrounded by the color of Barbie dolls and bubble gum doesn't feel helpful. I am so thankful for black, purple, and orange today. And chocolate.<br />
<br />
As you all know, I have lost a LOT of dear friends to breast cancer. Chris lost his dad to pancreatic cancer. My dear friend and fierce advocate <a href="http://cultofperfectmotherhood.com/" target="_blank">Beth</a> is nearing the end of her life now, which is devastating our MBC community and ripping a hole in her young family.<br />
<br />
This, I think, is the biggest rub when it comes to Pinktober: it's not about our breasts.<br />
<br />
They might be fun for a bit or serve a very special purpose for moms who are able to nurse when they're healthy, but when our lives are on the line (and they are -- 113 American women STILL die of breast cancer every damn day), our breasts are the last thing we're worrying about. And they definitely aren't what defines us as women -- healthy or not.</div>
<div>
<br /></div>
Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com1tag:blogger.com,1999:blog-7238780007621149539.post-878351870156266422017-10-02T15:56:00.002-07:002017-10-02T19:42:21.118-07:00Reclaiming OctoberIn case you missed it, October <strike>is right around the corner</strike> is here. (One of these days, I may sit down and write a whole post at once, but that day is not today.) It's even feeling like fall (i.e., below 100 degrees) here in Phoenix. Break out the freaking Uggs and pumpkin spice lattes already.<br />
<br />
September <strike>has been</strike> was a whirlwind, though luckily in Arizona, not a <a href="http://www.businessinsider.com/best-charities-to-help-hurricane-victims-harvey-irma-maria-2017-9/#hurricane-maria-and-irma-local-organizations-in-the-caribbean-2" target="_blank">hurricane</a>. Please go click that link to help if you can.<br />
<br />
Over Labor Day weekend, I went to Spokane to celebrate my grandmother turning 80; I had a birthday, too; I walked more than I probably should have at 7 months pregnant in another Avon 39 walk; my mom and a few dear friends flew in from out of town while some phenomenal women here threw me a baby shower, where I realized just how much PINK is about to come into my life, whether I'm ready for it or not; and I'm still managing a remodel so we have a place to put this little child when she arrives in the world. Since windows and floors are on backorder until mid-October, my god I hope she doesn't come early.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuZYnrlrAkbCNYbLNQfEe3CsSwJ8KhF2y_wOBOeFnNs0HVv5nVL418CqtM3b6jHm6yYybKFbWUPypuPG_bOqEtdGUhcjsneKpjddyPASuU_Yv6ZehyphenhyphenGcijTocHDWgGGJM2beEFH0u1pyia/s1600/IMG_3717.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuZYnrlrAkbCNYbLNQfEe3CsSwJ8KhF2y_wOBOeFnNs0HVv5nVL418CqtM3b6jHm6yYybKFbWUPypuPG_bOqEtdGUhcjsneKpjddyPASuU_Yv6ZehyphenhyphenGcijTocHDWgGGJM2beEFH0u1pyia/s640/IMG_3717.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My dad, me, my 80-year-old grandma, and my "little" brother. Life goals now include living until I'm 80, and looking half this good doing it.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk1DR6AlxrLafl8PdV7uIWDAkbmEnYIoevx-UCCvm2UCOk7o2laRXZrwcWaV8JTgzClT0U14NwaQX7VfVkrnd-EhR9cfGRvbGHCwLCaRVtLZt44NO2Pd2DCQJ7FelsDw697M5xVRwqWEVQ/s1600/IMG_3747.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk1DR6AlxrLafl8PdV7uIWDAkbmEnYIoevx-UCCvm2UCOk7o2laRXZrwcWaV8JTgzClT0U14NwaQX7VfVkrnd-EhR9cfGRvbGHCwLCaRVtLZt44NO2Pd2DCQJ7FelsDw697M5xVRwqWEVQ/s640/IMG_3747.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Booby & the Beast 2017.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEi11Ho6TB-qEjWOHg4-T-36gQSi0keK1lJ6MaeV1cslF6T3aL9OtdPtmngdOWEcSr7AIy2TR3M1ZPkzte-C9yB_DnYKGz5oyPfrl_z5PteTdvq2TixkCI7MTGlSSZg19_vx5lScXpIHJ5/s1600/IMG_3738.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEi11Ho6TB-qEjWOHg4-T-36gQSi0keK1lJ6MaeV1cslF6T3aL9OtdPtmngdOWEcSr7AIy2TR3M1ZPkzte-C9yB_DnYKGz5oyPfrl_z5PteTdvq2TixkCI7MTGlSSZg19_vx5lScXpIHJ5/s640/IMG_3738.JPG" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've raised a lot of money.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimM6vO5pefwoPF7mCy_EcrqqLWX2SKdDBaJCJcYKw81Stm15tKi2unzoh_05Nbw4ScxsMyXl7nnbliaExEWqG5jviY8rPLSnjmPcqUKSeOKp3Cg_62hE049VLI7-4DRDKT-HKYxIVpjsnT/s1600/IMG_0626.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimM6vO5pefwoPF7mCy_EcrqqLWX2SKdDBaJCJcYKw81Stm15tKi2unzoh_05Nbw4ScxsMyXl7nnbliaExEWqG5jviY8rPLSnjmPcqUKSeOKp3Cg_62hE049VLI7-4DRDKT-HKYxIVpjsnT/s640/IMG_0626.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These women spoiled me rotten and my heart is so full.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSr_34Zs-oBnhz3QqhDruFTPcVeOR2q4XRKf4w3ekKpOtmfQKrKmqImNrimwNJW7u0zrf2ax7wiTWtAU7ygY8vUv0adxfIul9Gjo2HaAYTY3okYct_V7toEO4k4xe0DbRtH1m_nShlVd4A/s1600/IMG_3806.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSr_34Zs-oBnhz3QqhDruFTPcVeOR2q4XRKf4w3ekKpOtmfQKrKmqImNrimwNJW7u0zrf2ax7wiTWtAU7ygY8vUv0adxfIul9Gjo2HaAYTY3okYct_V7toEO4k4xe0DbRtH1m_nShlVd4A/s640/IMG_3806.JPG" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My stunning mama & me. We felt all the emotions.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
So when I say October kind of snuck up on me, it's because I've been really, really <strike>distracted</strike> loved and celebrated over here. I've missed you guys, but at the end of the day, I can barely keep my eyes open to catch up on what madness our Tweeter-in-Chief has been up to, let alone put thoughts together here.<br />
<br />
But with October I feel an extra responsibility to speak up. My friend <a href="http://cultofperfectmotherhood.com/" target="_blank">Beth</a> is struggling to keep her platelets high enough for whole brain radiation every day so she can have a bit more time with her two kids and her husband, J. Knowing Beth, also so she can <strike>yell at Congress</strike> advocate to get more research dollars funneled toward metastatic breast cancer so moms (and others) can stop dying of this disease by the thousands. On that note, if you're able, please donate blood -- especially important given the tragedy in Las Vegas today.<br />
<br />
I walk the Avon Walk every year, but I struggle with the pink-ness of it all. With the "save the ta-tas" slogans and "free breast exams" signs held by men along the route, to which I want to scream, "Sure, take a look at these scarred and purple, cold and numb ones, you disease-sexualizing ass." And then I wonder whether my own blog (this one right here!) is part of the problem with <i>Booby</i> in its name. Am I also a disease-sexualizing ass?<br />
<br />
In the Avon walks I also always see a teenager or two walking for their deceased mom or a man honoring his late wife or a woman in the midst of treatment, bald and reminding me that DAMN, WOMEN ARE STRONG.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Ag73JxD0oLqfsm2pOhCt5l2KeK5QlLtjUYeircgE1K84WwehWhDJg8uOxZ9ZRJJIB9EVW9agV73536mRnCn5einCGZjpuPEqw5RC0Y9Q-hXmVDm7oB-7-dsLF85ISgE8Ee_8-PQGXguL/s1600/IMG_3761.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Ag73JxD0oLqfsm2pOhCt5l2KeK5QlLtjUYeircgE1K84WwehWhDJg8uOxZ9ZRJJIB9EVW9agV73536mRnCn5einCGZjpuPEqw5RC0Y9Q-hXmVDm7oB-7-dsLF85ISgE8Ee_8-PQGXguL/s640/IMG_3761.JPG" width="640" /></a></div>
<br />
At the end of the day, I walk because of Avon's mission to provide for <i>both</i> research and support for underserved communities. Because they lift up those at the margins who would be further marginalized by the bad policies our government seems to threaten on a daily basis. Because women of color -- particularly black women -- fare far worse than white women do when it comes to breast cancer outcomes, and I believe organizations like Avon can make a difference when it comes to these disparities. I was so moved by the speaker they chose at this year's walk, I wept <a href="https://www.facebook.com/alison.trope/videos/10159341019365054/" target="_blank">as she spoke</a> about her Stage 4 diagnosis that so closely matched what my story used to be. Her reasons for walking are worth hearing.<br />
<br />
And now I also walk because I'm about to have a little girl, and while men can and do get breast cancer, it is primarily a disease affecting women's bodies. IS THIS WHY WE DON'T HAVE A CURE? If testicular cancer killed 40,000 men a year (it kills around 400), would we have this problem solved?<br />
<br />
***<br />
<br />
Quinn had "pink day" at his school last Friday, presumably to mark the (near) beginning of October. When I asked him if anyone had talked about breast cancer at school, he said, "No." Then added, "Well, let me put it this way. I didn't <i>hear</i> anyone talking about it." Later, I realized it's probably because they don't want to use the word breast at an elementary school.<br />
<br />
On the way to school, I had asked Quinn if he ever talks about me having had breast cancer. He does not. "I don't even remember it!" he tells me, as if I'm ridiculous for asking. Oh, the sass of a six-year-old. And so I dropped him off looking like this, then cried a good portion of the car ride home.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VOphNL-VrDikC1aoPKLg6u18XWy7sbLIzEF_IzfsW5FREbHXPVNMPgydk9MV7TC3AvgciRib66o-64q2DIzwkGzqzRZoSFwBHIYeDTuwNI_1VebBAzU1sKDo1jIoNKbPV9VpzUEkOMcB/s1600/FullSizeRender+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VOphNL-VrDikC1aoPKLg6u18XWy7sbLIzEF_IzfsW5FREbHXPVNMPgydk9MV7TC3AvgciRib66o-64q2DIzwkGzqzRZoSFwBHIYeDTuwNI_1VebBAzU1sKDo1jIoNKbPV9VpzUEkOMcB/s640/FullSizeRender+4.jpg" width="480" /></a></div>
<br />
I cried because I'm pregnant, partly, but also because something that was such an enormous weight for our family is but a blip in this little guy's mind. Because if all continues to go well (knock on so much fucking wood), his sister won't have experienced my cancer at all. I cried because we are not the norm; most families do not get a reprieve from metastatic breast cancer unless you count death. Because we can do better -- in so many ways -- as a country.<br />
<br />
Please think of all that as we go into this "awareness" month. Please donate <a href="http://www.metavivor.org/" target="_blank">responsibly</a>. Please learn about the devastation of metastatic breast cancer. Please understand this disease is about so much more than saving some tatas or the color pink, unless you're six and get to dye your hair fuchsia for the first time.Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com2tag:blogger.com,1999:blog-7238780007621149539.post-1341487018185119232017-08-25T09:20:00.000-07:002017-08-25T09:20:08.532-07:00The Darkness is Only Ever TemporaryJust when I think I've sorted through all of my emotions about my cancer experience, a song comes on Pandora and I ugly cry in front of my six-year-old. And it's a song from Twilight, no less: <br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/rtOvBOTyX00" width="560"></iframe>
<br />
But it's also a song Quinn and I danced to at a wedding when I was still in the throes of chemo and scared out of my mind. Hearing it brought me immediately back to that time, and my emotions erupted before I knew what had hit me.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgUUD3mTZh79uNa-uUWcJmG3Asu5LkYlXqL8jjMiPHmXygBiNtSqiW_Qe8outF4LiRTrxvXaYyx7BtX8Qf-li4iGg1iAwJBmkv-2VpAzou8qF-8su7cTBzCAcOGtgWMcszO6E_-6jWYTlY/s1600/IMG_3626.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgUUD3mTZh79uNa-uUWcJmG3Asu5LkYlXqL8jjMiPHmXygBiNtSqiW_Qe8outF4LiRTrxvXaYyx7BtX8Qf-li4iGg1iAwJBmkv-2VpAzou8qF-8su7cTBzCAcOGtgWMcszO6E_-6jWYTlY/s640/IMG_3626.JPG" width="480" /></a></div>
This song interrupted our Scrabble game last week, because that's what we do now, when he's not asking me who will run on the Democratic ticket in 2020 or reading <i>Harry Potter</i> to <i>me </i>or trying to listen to his baby sister's heartbeat through my belly. So much has changed in the last eighteen months, especially, and words often escape me when I'm trying to reflect on it all. I did think I was past the ugly tears.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-PN8AmwPZjkSkcyMoB0Ugh0ZGxHtjC19k9V5C21dcS9Y4TXDNqOrwItcWCHI2fDQnz_KsD19AUZD65zWN0VgHPUHFC-CXzB-NErkVL3aK1YXc1ouBanoiSkGOK4MSL3cMgeyZaGF3Vp3u/s1600/21077517_10213810755801387_6042476055284675317_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="900" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-PN8AmwPZjkSkcyMoB0Ugh0ZGxHtjC19k9V5C21dcS9Y4TXDNqOrwItcWCHI2fDQnz_KsD19AUZD65zWN0VgHPUHFC-CXzB-NErkVL3aK1YXc1ouBanoiSkGOK4MSL3cMgeyZaGF3Vp3u/s640/21077517_10213810755801387_6042476055284675317_n.jpg" width="640" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio5_PtSE73OtprfwRN8U0GWc2k0415swNVM50CMpQsnvNfgAIwTDP52S3z9gDLY1nhoHfu3bzlin7blbehNa-iBiB_InyKgVq95fKmUEh2Y1aMKKQf_HhirH7cOszM1fXw7juYwWVNv7Rd/s1600/IMG_6451.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio5_PtSE73OtprfwRN8U0GWc2k0415swNVM50CMpQsnvNfgAIwTDP52S3z9gDLY1nhoHfu3bzlin7blbehNa-iBiB_InyKgVq95fKmUEh2Y1aMKKQf_HhirH7cOszM1fXw7juYwWVNv7Rd/s640/IMG_6451.JPG" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Clearly, a favorite activity of ours.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: left;">
This past Saturday marked<i> six years</i> since my diagnosis. Six years of terror, relief, anxiety, grief, hope, and far too much chemo to count. Five years of wondering whether I would live long enough for this little wonder child of mine to remember me. Four (and a half) years receiving chemotherapy, an infusion at least every three weeks. Three years writing a memoir about the whole experience. Two years in chemically-induced menopause. One year since everything changed.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
But who's counting?</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Last Saturday also happened to be the day ushering me into my third trimester of this <a href="http://www.boobyandthebeast.com/2017/06/well-played-universe.html" target="_blank">pregnancy</a>. I have so many mixed emotions about this particular cancerversary milestone. Six years is obviously something to celebrate, but so is every day. So is a new life growing inside of me, rolling and kicking and hiccuping almost as much as Quinn did in utero. And while I celebrate my own milestones, I am still so angry that so many of my friends are facing this stupid disease. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Last week, one of my closest friends had a bilateral mastectomy because they found what appears to be early-stage cancer in her left breast two days before her 37th birthday. I naively thought I'd taken one for the team, so to speak, with my group of friends, and that no one else in my immediate circle would have to deal with this shit-storm until we were all <i>at least</i> post-menopausal. I don't know why my brain tries to play tricks on me like that. I should know by now that is not how cancer works. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I am mad that it is <a href="http://cultofperfectmotherhood.com/blocking-and-unblocking-the-sun/" target="_blank">good news</a> when another of my friends, Beth, <i>only</i> has to contend with lung mets that make her cough so hard she vomits and brain mets that send her into seizures. It is good news because at least she is not facing hospice right this minute. At least we have her voice and her brilliant advocacy efforts for a bit longer. And I celebrate because I got to hug her when I was in Seattle last month.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLwtDq3a5nUaLi0liWfTjGjv9FGCpzdAQwIiwk_BhuGeDuOQnN1BI1s3_dLU7nq7THo7oJrwf_oaNMc6pXTMa3JDf0QuV27PNFQlf86X-tFjOF2r0JVE5zDDKGauZcTlr6G3u5lj4BkfjT/s1600/20525712_10213642363271679_8562604250820802902_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLwtDq3a5nUaLi0liWfTjGjv9FGCpzdAQwIiwk_BhuGeDuOQnN1BI1s3_dLU7nq7THo7oJrwf_oaNMc6pXTMa3JDf0QuV27PNFQlf86X-tFjOF2r0JVE5zDDKGauZcTlr6G3u5lj4BkfjT/s640/20525712_10213642363271679_8562604250820802902_n.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I am terrified about when the other shoe is going to drop, for me, for Beth, for so many of my friends. I worry that I got out of this too unscathed, despite my scars, my lack of breasts, my lack of eyebrows. So I celebrate, yes, but I also cry loud, body-rocking sobs in front of my six-year-old every once in awhile. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Then a phenomenon like the eclipse occurs, and we pulled Quinn out of school to make a pinhole cereal box viewer and watch the events from a lawn at ASU. The whole country, it seemed, came outside to watch, and I am reminded that the darkness in our lives is only ever temporary. That these moments are magical, and worth celebrating. Here's to the light.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-version="7" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
<div style="padding: 8px;">
<div style="background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 50.0% 0; text-align: center; width: 100%;">
<div style="background: url(data:image/png; display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;">
</div>
</div>
<div style="margin: 8px 0 0 0; padding: 0 4px;">
<a href="https://www.instagram.com/p/BYEUIujAExy/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">#eclipse2017 I'm taking its lesson to heart: darkness is only temporary.</a></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
A post shared by Jen Campisano (@jencampisano) on <time datetime="2017-08-21T19:22:37+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 21, 2017 at 12:22pm PDT</time></div>
</div>
</blockquote>
<script async="" defer="" src="//platform.instagram.com/en_US/embeds.js"></script>Booby and the Beasthttp://www.blogger.com/profile/01130302818680322634noreply@blogger.com1