Monday, April 25, 2016

Standing on the Shoulders of Activists Who Came Before Me

A couple of weekends ago (and I really cannot believe it's taken me this long to post about it, except I also sorta can, because -- well, life), I was in Chicago for HealtheVoices16, a conference I'm proud to have advised on over the past few months. I got to help shape a weekend in which nearly 100 of us gathered to talk about our online communities across a number of health conditions -- HIV/AIDS, diabetes, mental health, cancer, Crohn's/colitis, and rheumatoid arthritis, to name a few. We talked, but we didn't just talk -- we made deeply rooted connections, the theme of this year's conference.


One example: AnnMarie Otis of Stupid Dumb Breast Cancer was there, and it was our first time meeting in person even though we've been in touch on social media and even over the phone for years. Yes, she is as tiny and fierce and passionate in person as she is in her online presence. We hugged and cried a little. We talked about our mutual love of Birkenstocks and our Sunday Italian family dinner traditions. We practiced yoga together. I'm the one in the crazy pants.



On Saturday night, AnnMarie was at my dinner table. We sat next to an HIV activist, Aaron Laxton, who is as brilliant as they come. I could listen to that man talk all day about viral loads, clinical trials, and the work that still needs to be done in bridging the gap between the 'haves' and 'have-nots' in this country (not to mention the world at large).

I implore you to click on the links to Aaron's story. He talked to me about prognoses for those infected with HIV; it's pretty good so long as the person receives treatment. AnnMarie and I marveled at how far the metastatic breast cancer community still has to go. "We are in the freaking dark ages," she said to me at one point. To which Aaron responded, "I am standing on the shoulders of the activists who came before me. Let me help your community."

And then I started crying. Again.



***

As part of my conference duties, I had the honor of introducing a session speaker, Trevis Gleason. Trevis lives with multiple sclerosis (a word, I learned, that is very hard for me to say when speaking in front of a group). He's also a former chef from Seattle who now spends part of his time in Ireland. After blogging about MS for some time, Trevis wrote a memoir I can't wait to read, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. His talk to our group was about taking our advocacy efforts offline, something I've been trying to do more of over the last year.

I've got a conversation scheduled with my agent this week about whether my book has garnered any interest from publishers (WHY DOES THIS PROCESS TAKE SO LONG). Aaron (the guy in the photo above) is going to teach us in the MBC community some advocacy tricks. I am participating in a Twitter chat about metastatic breast cancer with the Tigerlily Foundation in early May...which is suddenly next week. And I am waiting to hear about an advisory role with the Young Survival Coalition.

I am inspired, and can't wait to see what lies ahead.

But first, camping with Quinn's preschool this weekend. Because -- well, life.

** Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.**

Thursday, April 7, 2016

In Which I Turn a Bath Mat Into a Magic Carpet

Are tantrums at this age normal? (I mean five, not thirty-seven, by the way. I'll get to my own tantrums in a bit.)

I don't know what I was thinking, but I didn't expect this. (How many times have I uttered that statement in the last five years???) I assumed this behavior would dissipate after age three, and be totally gone by now. I thought we'd turned some magic corner (those exist, right?), a corner that led to a million questions a day and incessant curiosity, but a corner nonetheless. I mean, he can brush and sometimes even floss his own teeth, for goodness' sakes. I was prepared for the occasional whininess after too little sleep or crankiness caused by low blood sugar. I mean, isn't that what the Snickers commercials are all about? But full on tantrums? Those weren't on my radar.

Then again, what do I know about five year olds?

After a bedtime-routine battle of epic proportions the other night -- including a showdown over the need to pee before bed and a scene that would have been hilarious if there hadn't been so much defiant yelling involved as he HELD ON TO A BATH MAT TO AVOID BEING LIFTED ONTO THE TOILET (well played, sir). Anyway, after this, once I'd gotten him settled in bed or so I thought, talked to him about behavior that's acceptable and behavior that is unequivocally not, Quinn came out, found me in the kitchen, and told me in a small voice that he didn't think I even liked him anymore.

That sound you may have heard?

That was my heart shattering in a million pieces. I'm still looking for a few of the shards on my kitchen floor.

Oh, my boy. My heart. My world. I am so, so sorry for letting you ever feel that insecurity, that doubt.  Look at you; you are perfect.


In that moment the other night, I scooped Quinn up, held him in my arms even though I can tell I'm getting close to a time when I won't so easily be able to manage that feat. I assume my heart will fall apart again when I can't pick him up anymore -- or worse, when he doesn't want me to. I told him that even when he misbehaves, even when we don't like his actions, we will always like him. Always love him more than anything.

I reminded him that sometimes he doesn't like the things I say or decisions I make but he still loves me. (I checked).


And then I thought, of course, of my own mom. How I must've done these types of things to her well into high school and -- oh, yeah -- right up through last weekend when I threw a fit over something she shared with my brother that I wasn't quite ready for him to hear. At worse a minor infraction, in the grand scheme of things. More likely, a misunderstanding. But oh how I yelled. Of course, Quinn heard that fit of mine, asked questions about it, probably formed connections in his developing brain that maybe it's okay to yell at people you love when you're upset.

It's not okay. But it happens. Hey, Mom? I'm sorry.

This week, I'm re-reading No Drama Discipline: The Whole-Brain Way to Calm the Chaos and Nurture Your Child's Developing Mind. A book that tells me to take heart: "The fact is that none of us are perfect, especially when it comes time to deal with our kids' behavior. Sometimes we handle ourselves well and feel proud of how loving, understanding, and patient we remain. At other times, we lower ourselves to our kids' level and resort to the childishness that upset us in the first place. . . .

So here's hope: those not-so-great parenting moments are not necessarily such bad things for our kids to have to go through. In fact, they're actually incredibly valuable.

Why? Because our messy, human, parental responses give kids opportunities to deal with difficult situations and therefore develop new skills. They have to learn to control themselves even though their parent isn't doing such a great job of controlling herself. Then they get to see you model how to apologize and make things right. They experience that when there is conflict and argument, there can be repair, and things can become good again. This helps them feel safe and not so afraid in future relationships; they learn to trust, and even expect, that calm and connection will follow conflict."

I'm highlighting just about every word in this book right now. Yes, some of these outbursts might have to do with us carrying a heavier than normal load of uncertainty lately. Thanks for checking in on me; mostly, we are okay, just regaining our equilibrium as a family and focusing on that calm and connection.

Monday, March 21, 2016

Radioactive

Scan day kind of snuck up on me this time around. I didn't really think that was possible, but more than four-and-a-half years in, this path I'm on still surprises me.

And it's been awhile, so my oncologist ordered a PET/CT instead of just a CT. 

My very basic understanding of the imaging processes is that a CT scan exposes me to less radiation (but still something like 6 months' worth of normal everyday radiation, all in one sitting). Using x-ray technology, a CT scan shows cross-sections of my bones, organs and tissues, as if I'd been cut into teeny tiny slices. If something abnormal -- a tumor, say -- were present, the images would show where and give my doctors a pretty precise idea of its size.

In a PET scan, by contrast, I show up to the scan after fasting all morning and avoiding carbs the day before. (I AM FREAKING HUNGRY AND I NEED COFFEE.) Prior to the scan, I'm injected with a radioactive glucose, the idea being that any cancer cells would eat it up and then light up on screen. This "uptake" is then measured to give doctors an idea of how active (or not) any cancer is. There's quite a bit more radiation exposure with a PET scan since, well, they INJECT ME WITH RADIOACTIVE GLUCOSE.


(That tube right there is connected to my port; that radioactive sugar -- stored in that lead capsule to avoid exposure to the technicians -- is going pretty straight to my heart.)

In fact, I'm specifically told not to be in the vicinity of children under the age of 12 or pregnant women for four hours after leaving the hospital.

I don't know why, but this fact makes me extra emotional.

***

Chris and I were discussing logistics yesterday while Quinn was in the car. Quinn has heard so much in his five years. My medical issues are a part of our day-to-day lives and lexicon, and I don't often think to filter myself, especially when to some degree we're just talking about pre-school pick-ups and doggie daycare. I was telling Chris that since I'm supposed to avoid pregnant women and children for four hours, it might be best to take the puppy to doggie daycare, too, to avoid risk to her. Out of an abundance of caution.  

Somehow, this is where Quinn's ears perked up. "Why can't you be around kids?" he asked from the backseat.

"Because some of the stuff they have to put in me for the pictures they're taking is radioactive, and it's not safe for you to be around. But it'll be fine by the time I pick you up from school," I said.

"What's radioactive?" 

At which point Chris chimed in, trying (I think) to be funny but also to educate our 5-year-old. He is, after all, a professor of geology. "Radiation is the energy released when an unstable isotope of an element changes to a stable isotope."

"Huh?" Quinn and I both said.

"Um, it's just something to help them look inside mommy, like an x-ray, but stronger, and it means I can't be around you for a little bit. You'll be at school so you won't even know the difference," I tried. 

"But you can't be around me for four hours," Quinn said, clearly getting anxious about it.

"I don't want you to worry about that, buddy. Four hours is like the time from when I usually drop you off until when your friends have nap time. Please don't worry," I said.

"It's really hard not to worry about it," he said, and my heart broke open a bit, again.

I turned around to hold his hand, then. "Please don't worry, okay?"

Please. Don't. Worry. Don't worry about mommy leaving you, about my scans, about anything at all, my little man. My child.

***

So this is Monday. This is so many days. I hate cancer.

Monday, March 14, 2016

Five

My Love Love,

How has it been a year since I wrote the last one of these? How are you FIVE? Time is a funny thing, isn't it? A couple of weeks ago, on the way to school, you asked me what makes today a new day. I explained that the earth rotated one full turn, that every morning is a brand new day.

"But what makes it different?" you wanted to know, after you figured out that we're always spinning in space -- too slowly to feel, too quickly now that I'm a mom.

"Today we get to choose to be awesome!" I said, apparently having gotten a good night's sleep the night before and doubled up on my morning coffee. "I'm going to try to be an even better mom to you. What are you going to try today?"

You said something ridiculously sweet, like, "You already ARE a good mommy!" Because that's who you are, how big your heart is.

A few days later, we heard this song on the radio about trying everything.



"How is that even possible? For one person to try everything? I don't get it! What does that even mean?" you said, your inflections slaying me. I basically want to carry around a recorder and catch your voice all the time lately. You talk almost incessantly around your dad and I, and I still can't get enough of it.

That morning, we talked about living an adventurous life, about exploring and traveling, about being open-minded. I don't think you'll have any problems in this regard (except maybe when it comes to trying new vegetables). I love seeing the world unfold through your eyes.



For weeks, I'd been filling out family information forms for kindergarten, with questions along the lines of "describe your parenting style" and "what are your child's strengths" and "list anything you would like to keep out of your child's early childhood experience."

I would say my parenting style varies between nurturing -- perhaps to a fault, if that's possible, because I've always loved you with the fear of cancer lurking in the background, wondering how long my luck could possibly hold, so I dote on you a bit -- and freaking out because we're running late yet again and no one can find their shoes or sunglasses and I forgot it's my day for snacks at preschool. I am not quite sure how we're going to get to kindergarten by 8:30 a.m. come August.

But I'm at the point where I can pretty confidently say I think I'll be here to see you start kindergarten (knock on wood), so I'm not really going to sweat it if we're a few minutes late the first week or if your socks don't match.

Your strengths are easy. You are creative, helpful, thoughtful, empathetic as they come, curious, adventurous. I ran out of space on these forms to say all the wonderful things about you. In one of my favorite birthday cards you received, a friend of yours wrote that what he loves about you is how funny you are, then included a story of you standing in front of a mirror at school, saying, "Why are you copying me?" Please don't ever lose your goofiness.





What do we want to keep out of your early childhood experience? Bullying. Violence. Meanness.

What I didn't write: cancer. I wish I could have kept that out, but no one asked me about that one. What goes without saying: death. I really don't want that to be part of your childhood any more than it already has been.

Two days after your birthday, the three of us boarded a plane to Kauai, where your grandparents had requested their ashes be spread. Our second day there, we found a guy who would take the three of us out on his boat to scatter the ashes in the Pacific. You wanted to know why Grandma and Grandpa wanted their ashes spread at sea, what it meant to be cremated, whether it hurt them, where their bodies are now, what happens to us when we die. "What is heaven?" you queried, the end of a long line of questions to which I have only vague answers. I may not have all the answers, but I love the richness of our conversations lately.

I am still scared for the day when you start asking more questions about cancer.


I write these letters to you as the time comes, to reflect on the last year. I don't write them in advance, and I haven't done one of those "cards for every potential occasion I might miss as you grow up" kinds of things. If I died tomorrow, this would be it: whatever I've written for you here, plus snippets in your baby book. I haven't wanted to go down that "just in case" path. I've wanted to believe I'll be here to dance at your wedding instead.

But honestly, I wasn't really sure whether I'd be here for your fifth birthday when I was diagnosed with metastatic breast cancer four-and-a-half years ago. The statistics aren't great, but as your Grandpa Jim would have said, "Statistics don't mean a thing for the individual." You'll have to forgive me if I was a little emotional when you woke up last Sunday and found me in the kitchen drinking coffee and looking at baby photos of you. You declared, "I'm five!" and have said it intermittently over the last week. Riding your bike with no hands yesterday, you stepped it up with, "Being five is AWESOME!" because, obviously, no hands.




Four was pretty magical, too. My heart already aches at how much I'm going to miss our days together when you're in school full-time, busy with activities and friends and all the exciting growing-up stuff on your horizon. But the flip side is that my heart swells with gratitude and hope that I might be here for more and more of it. That you might get to know me like I know you.

How did I get so lucky, little one?

A photo posted by Jen Campisano (@jencampisano) on

You question everything, want to see the proof. "Just trust me," or "because I said so," are never going to be enough for you. Some days it makes me batty, but at the same time I love your insatiable curiosity, your not being satisfied with the easy answer, your constant desire to hear the full truth.

I slipped and told you to keep track of your shit the other day, after you'd asked me for the gazillionth time where something of yours was. You stopped, because you knew somehow this was a word I shouldn't have said.

"What's 'shit'?" you asked, a half smile spreading across your face. "'Shit' is a funny word," you went on.

"It's a mommy word, and you shouldn't use it," I said.

"Tell me what it means, and I promise I won't say it," you bargained.

"It's basically poop," I said, hesitant. What had I gotten myself into?

You laughed, and looked at me funny. "Mom, you just told me to keep track of my poop!" Ha ha hahahahaha. Ha. Mommies are hilarious.

To your credit, you haven't repeated the word since (knock on more wood).

***

At night, when I'm tucking you in after we've read your three stories to you -- or lately, you reading to us! -- I tell you I love you more than anything. "I love you more," you say most of the time.

"I doubt it, but tell me how much," I say. I love to hear where your imagination goes.

"I love you to the end of space, past all the galaxies, times infinity," you say, "then back into your heart for you to keep forever." Then: "What's after space?" Of course.

"That's SO much!" I say. I wonder where you come up with this stuff. "I love you that much, too, buddy. And I don't know what comes after space. It's a mystery."

You ask me if I'll still love you when I'm dead. "I think a part of me will, even after I die." What do I know? Anything is possible. I hope that won't happen for a long, long time.

"I think so too. I'll miss you so much," you tell me. I try not to cry. Sometimes I succeed, sometimes not. And you lean in for a bear hug. You're so great at those, and I'm amazed at your strength.

I'm amazed at you. You're five!

Love,
Mama

Tuesday, March 1, 2016

Honored and Humbled

I received a surprise email last week, letting me know I'd been chosen as one of Healthline's Best Metastatic Breast Cancer Blogs of 2015. I didn't even know my blog was being considered! The email went on to say that "Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs."

I am beyond honored to be included among some of my favorite people in this community. It's a community none of us wanted to be a part of, but here we are writing through our experiences, sharing our hopes and fears, and even advocating for change in the research world. If you're reading this, I encourage you to take a peak at some of the other honorees' sites. These are some badass women. 

And I do think we're collectively starting to make a difference. People in high places are starting to take note of the plight of those living with metastatic breast cancer. I, for one, can't wait to see the end of MBC as we know it. We're not there yet, but just since my diagnosis four-and-a-half years ago, the average life span is already starting to increase for those with mets. 

HURRY UP, RESEARCHERS!!!

I received this fancy badge to embed on my site, which you may have noticed on the sidebar. I'm humbled, and honored, and so incredibly appreciative of your support -- my readers, friends, and family -- over these past several years. Thank you for keeping me going.

Thirteen days after my diagnosis, I started this blog. I started my first round of chemotherapy (Taxotere, Carboplatin, and Herceptin) the next morning. I was scared out of my mind, but eager to eradicate this beast inside of me. Initially, I intended my blog to be a means of communication when medical information was seeming to come in at warp speed. A good friend suggested it, and I thought it would be easier than sending the same email to concerned friends and family a hundred times over.

I never expected my little space on the Internet to blossom into what it has become, a therapeutic outlet for me that has also embedded me in a powerful community of thrivers and advocates, moms and can't-be-moms, daughters, sisters, and wives. I didn't expect I'd have my heart broken so many times. I didn't even really expect to still be here nearly five years later. I didn't expect that I'd have strangers reach out to connect with me through the ether to tell me their stories and say thanks for sharing mine. Words have so much power. Thank you for reading mine.