Cancer Advocacy Update

My friend Beth has been denied the chemotherapy drugs her doctor is recommending she get to treat her metastatic breast cancer. Her insurance company, +Blue Cross and Blue Shield Service Benefit Plan doesn't think she should have them. They did a cost-benefit analysis, apparently, and decided Beth's life wasn't worth it. I think that about sums it up.

I am angry, and you should be too.

***

Photo by Stan Mouser

I flew to DC last week and spent all day Thursday at a policy roundtable to discuss the future of cancer policy post-election. What happens to the Patient Protection and Affordable Care Act (ACA/Obamacare)? Will Vice President Biden's Cancer Moonshot still get funded? Is Paul Ryan going to be successful in privatizing Medicare? Will the Medicaid expansion go away?

Mostly, I listened, because there were some serious wonks on those panels, women and men who've spent their entire careers focused on healthcare policy and how to improve the system. I also asked a few questions. 

Deep into a discussion on "high-risk pools" and the need to draw in "young immortals" to decrease overall insurance costs, I raised my hand. 

"Hi. I was one of those 'young immortals' until I was diagnosed with metastatic breast cancer at age 32. Metastatic cancer in young people is on the rise, but people are also living longer with cancer. Cancer is expensive. What about lifetime and annual limits, which are currently prohibited under the Affordable Care Act?"

To which the response was, essentially, "Your life matters. I'm sorry for your experience. But trade-offs will have to be made."

Trade-offs. This is what we're up against, folks.

***

Here is what I learned, although nearly every speaker admitted we are all trying to read tea leaves at this point. No one really knows what a Trump administration is going to look like, but we do know that the Republican Congress of the last several years has voted to repeal the ACA more than 60 times. 

One panelist likened it to a dog who finally caught the car. The question is what does the dog do now? 

1. Repeal and replace was just a campaign slogan. The general consensus was there is not currently any republican agreement on what to replace the ACA with. So there will be efforts to repeal, possibly with a phasing in of something else down the road. There are legislative tricks up those republican sleeves, including a way to repeal without the requisite sixty-vote majority typically needed in the Senate. Get poised to hear budget reconciliation a lot. And if you don't currently have insurance coverage and think you might want it, APPLY FOR COVERAGE NOW. Keep current on your payments. Those with existing coverage may be grandfathered in to new legislation, if and when new legislation is introduced.
2. Medicare (and Medicaid) as we know it is at risk. Speaker of the House Paul Ryan has repeatedly made it clear he wants to overhaul Medicare (likely to privatize it, similar to what happened with our prison system. That didn't work out so well.) Another panelist said she'd be shocked if this happens in the same year as a repeal of Obamacare, but it's still at risk. While many panelists cautioned that republicans gut Medicare -- and potentially alienate the AARP crowd -- at their peril, Paul Ryan and company seem determined to move on this one. And if the ACA is repealed, so goes the Medicaid expansion. 
3. Cancer Moonshot funding is a concern. Congressional appropriations for fiscal year 2017 are at a stand-still because of the election (with another continuing resolution expected before December 9th), and didn't include specific funding for the moonshot anyway. At least one advocacy organization is urging its followers to reach out to Congress and demand a vote on NIH funding this year, rather than flatline the funding at 2016 levels. Another opportunity for funding the moonshot is the 21st Century Cures Act, which increases funds in exchange for decreasing regulations at the FDA. But prospects for that legislation during this lame-duck session are murky. I feel like I'm giving you answers straight out of a Magic 8 Ball: reply hazy try again. 
4. Speaking of the Moonshot, MATCH Trials have begun. These clinical trials aim to analyze patients' tumors for genetic abnormalities for which we already have targeted therapies. We might have data from these trials in as soon as one year. The current acting director of the National Cancer Institutes is planning on staying on in this administration as long as possible. Typically, it takes new presidents about a year to replace these appointees.
5. Advocacy is more important than ever. Every speaker mentioned it. We need to tell our stories and show that we are more than just a cost in the cost-benefit analyses that Congress and insurance companies are doing. We need to talk about why the Affordable Care Act is important (protections against prohibiting coverage for pre-existing conditions and bans on annual and lifetime coverage limits are my two gems). Is the ACA important to you? TELL YOUR STORY HERE. And write, email, or tweet Congress to tell them your concerns. 

***

After a full day of policy information that was admittedly bleak, I went with a representative from MetaVivor to meet a friend on Capitol Hill. We talked about how her office can help us in the cancer community. We have allies on the Hill who understand how expensive treatment is, who know women (and men) are dying by the hundreds every day, and who want to keep the protections that have been in place for several years now. They (and I) also understand the current system isn't perfect, but we don't believe the answer is cutting off protections and coverage for millions of people. 

People like my friend Beth cannot afford gaps in insurance, let alone insurance that isn't working for them and denying treatments. Another friend told me she would stop treatment rather than bankrupt her family, if she lost her access to Medicare. My friends are having to think about making the choice to die or pay their bills.

We have work to do.

What Can We Do Now?

Well, that didn't go as I had hoped. I am still troubled by Republican plans to gut the Affordable Care Act, phase out Medicare, and -- in all likelihood -- reduce spending on cancer research. But those are not my only concerns, not by a long shot.

Maybe I should give you some background on me. 

I think I mentioned way back at the beginning of this blog that I grew up an Army brat. I can't find the reference, but trust me on this. It happened. My family moved, on average, every two years. 

I went to three different high schools, two of which were majority minority. Having lived on military bases -- which were very racially diverse, maybe still are -- until late in middle school, I didn't think much of it. I took that diversity for granted.

Here's a page from my yearbook in 1995, the second high school I attended. Don't ask me what I was thinking with that hair. But you see the faces of my classmates? This is the bubble I grew up in. We also had the benefit of not much socioeconomic adversity, since most of our parents were in the military. 

Growing up, I took acceptance of our differences for granted. For years, I naively assumed that racism was pretty much gone in this country because I didn't see much of it in my early life. I lived in Korea and Alabama twice and Florida -- and because us kids were mostly getting along (except for that tiff between the Puerto Rican students and Mexican students at my high school in Orlando that one time), I wrongly assumed adults were mostly okay with each other, too.

Even as I witnessed with horror the killing of Trayvon Martin, Terence Crutcher, and SO MANY others, it didn't dawn on me that racism was still prevalent enough in this country to elect Donald Trump. I still held out hope that we would collectively stand up against an openly racist and inflammatory candidate. 

I'm not sure that military diversity bubble was the most productive for my worldview, since it meant that I was surprised and gutted by this year's election. I am heartened only by the fact that more of the electorate voted for kindness and inclusion, but that doesn't change the outcome.

I was blind, but now I see. 

I still don't understand or begin to make excuses for the 53% of white women who voted for Trump. If you are one of them, can you please explain your decision to me in a way that doesn't belittle Hillary? I can wholly understand how reasonable people could not like Hillary's policies, but to choose a man who would "grab 'em by the pu**y" to represent women's interests? Our daughters'? Did you hate Hillary that much? Can you not see past the end of your noses? Are you -- my neighbors -- really supremacists? I'm trying to understand, and I just don't.

So what now? What can we do to keep hope alive in this country? SNL this week helped. If you're one of the few people who haven't seen it yet, Kate McKinnon's rendition of Leonard Cohen's iconic song is beautiful: 

"I'm not giving up, and neither should you."

And A Tribe Called Quest has always been one of my favorites.



In that vein, I'd like to point you to a few women- and minority-run businesses that are doing good things, mostly in the breast cancer space, but not exclusively. (Note: I don't know how all of these people voted, but their work is impressive enough for me to put it here.)

1. The Brobe by Allison Schickel: I wished I'd had one of these when I had my bilateral mastectomy nearly five years ago. The material is incredible, it has a built-in bra and internal pockets for drains. I do have one to give away. If you're interested, please leave a comment and I'll send it your way. It's black, size large, and comes with some jewelry from...

2. Kendra Scott, who donated $100,000 to...

3. MetaVivor.org, which is committed to funding metastatic cancer research.

4. HealinComfort by Cherie Mathews: similar to the Brobe, above, but meant to be worn out of the house, too. I think I used safety pins to keep my drainage bags hooked to the inside of my zip-up sweatshirt. But I had Chris to help me with fastenings, and this shirt would have been so much easier.

5. Tigerlily Foundation: helping young and underserved women get through cancer.

6. Shay Sharpe's Pink Wishes: granting wishes to terminal breast cancer patients.

7. PAL Experiences: opening up new worlds for children living with autism.

8. Kerry Burki: a catalyst for positive change in our world.

9. Lara Agnew: my talented friend who reveals the beauty in our world.

10. Farmyard: local CSA serving Phoenix

11. AnaOno Intimates: beautiful lingerie by and for breast cancer survivors.

12. HulaBelle Swimwear: bathing suits for women who've had breast cancer.

13. Cat & Owl Co.: fun games to play with your young children that also teach them math concepts. Quinn LOVES these games.

14. Brim Papery: cards, mugs, and paper products that make great gifts.

15. Emily McDowell Studio: best known in my circles for the "Please let me be the first to punch the next person who tells you everything happens for a reason" card.

Also, here is a list of organizations that need our help right now.

This week, my family and I have also donated to Planned Parenthood, contributed to the ACLU, and I'm going to find ways to give back to my community, here in still red Arizona, that don't simply involve writing a check or canvassing in neighborhoods that apparently turned out to vote for Hillary in much larger numbers than my own. What will you do?

My Tribe Will Understand My Memory Issues

I can’t thank this community enough for your support after my last post. I have cried reading through your comments and emails, Facebook messages and texts. I was scared to share this part of my story. I was worried about what it would mean for my identity (because once you put it on the Internet there’s no going back). I was afraid about what it might mean to break ties with a community that’s become a second home.

I shouldn’t have worried. This is my tribe, and its members are not victims who cry foul when another gets good news. Instead, I mostly heard: this is a miracle, and we love you. One friend said, "We are not kicking you out just because you lucked out!"

I love you all right back.

I still had cancer. I still experienced nearly five years of metastatic cancer. Now I just have different appointments and different doctors to figure out what the best path forward is for me. I’ve got more pain and sometimes even miss the damn steroids. I’ve got similar levels of fatigue (apparently it wasn’t just the chemo). My chemobrain might be slowly retreating, but it’s been replaced by an anxious fear that perhaps none of my doctors know what they’re talking about.

I still feel scatter-brained most days.

And Chris occasionally makes fun of me, but keeping track of it all, then and still: the appointments, kindergarten volunteering, and now, also, a job search, is not something I can seem to manage on my phone. Calendars don’t sync, I fumble with my thumbs when trying to enter new appointments into my device at the end of one doctor’s visit and get frustrated, and inevitably ask for a print out of my follow up visits anyway.

I know. I sound like a dinosaur.

I prefer paper. I prefer a hardcover book, too, although I recognize the convenience of my Kindle for travel. But for my calendar? For keeping track of my life? It’s a spiral-bound monthly planner all the way. My 2016 one has photos of Quinn interspersed throughout, and I'll probably hold onto it forever for that. And because this year has been something else, amiright?

The cover of my 2016 planner. Photo taken by Jodi Lynn Wall, April 2015

A few weeks ago, a woman reached out to me to share her breast cancer story, and to ask if I’d be interested in trying out some of the products she’d designed for the company she works for, Erin Condren. You might have heard of them?

Would I like some paper and pens and organizing pockets and even a journal, too? Yes, please! Sign me up. In ink.

{photo source: www.erincondren.com}

And then I learned that a portion a full FIFTY PERCENT of the proceeds of these products would be donated to the Pink Lotus Foundation, which aims to provide treatments for underserved communities. To help women who don’t have the means or insurance to help themselves when they’re diagnosed with breast cancer. See, corporate America? There IS a way to do Pinktober correctly!

***

Side note: do you know how much DISPARITY exists in breast cancer survival rates? That African American women are more likely to die of the disease, and that women of color are less likely to be given information about reconstruction options? That death rates are falling overall for breast cancer, but not nearly as quickly for women of color?

This is why I’ve walked the Avon Walk these past 5 years, with my team raising more than $100,000 to help underserved communities (and provide money for research). It is a cause near and dear to my heart because I have been fortunate, and I hope I don’t take a dollar of that for granted.

Do you remember my SIX THOUSAND DOLLAR shot? One shot. That I received probably fifteen times for just the cost of my copays.

Cancer is expensive. Treatment is expensive, transportation to/from doctor's offices is costly, and taking time off work to receive and recover from treatment isn't a viable option for many, many women. That's where organizations like the Pink Lotus Foundation and Avon come into play. I will support them as long as I'm able.

***

Last week, I went in to have my thyroid checked, because I’ve gained an unusual amount of weight since stopping treatment. My thyroid appears fine, but my joints all ache. I’ve got an MRI of my knee today, and tomorrow an ultrasound of my right armpit for a painful lymph node (or possibly just the spot where my implant is sewn into scar tissue).

I missed the third presidential debate to be on a flight to Houston to attend a metastatic breast cancer conference as a patient advocate. From what I understand, SNL did a fine job of summarizing the two candidates. I'm going to order my "Nasty Woman" coffee mug as soon as I'm done writing this.

Before my flight to Texas, I helped Quinn's class of 27 kindergarteners plant beet and carrot seeds in their class garden. Friday was a school book fair, this weekend we had two birthday parties, a soccer game, and ASU's homecoming. Tomorrow is our 8th wedding anniversary. I can’t keep track of all that in my head! Pre-chemo, I might have been able to, but now I rely on writing everything down.

And I never do sponsored posts here. I don’t even know if this counts as one. But I did receive some free products, and I am vouching for their awesomeness, so here is my disclaimer. Also, send some love to our tribe member Sam if you get a chance. She’s doing good work, and keeping me a little less scatter-brained in the process.

An Announcement

Last Friday, Quinn's class had pajama day and an ice cream party to celebrate the number of "class compliments" they've received since kindergarten started eight weeks ago. He has grown up so much these past couple of months. He's made new friends and started to find his way at a big, new school with big, new rules. He is learning to read, playing soccer now, and asking for time with his friends more and more. Our dynamic is shifting, and I'm trying to breathe my way through it.

But after school last Friday, he went to the bathroom, then walked around the house in his pajama top and underwear, sending me straight back to his toddler years when he refused to wear pants at home. A glance at his thighs alone had me in tears before I knew what hit me: a nostalgia for what wasn't, for something we'd missed, for a past I can't change.

I spent that evening watching old videos of Quinn: swimming, opening Christmas presents, on our way to adopt our first dog (the one that ended up biting him in the face), telling me I was his best best friend forever. I am a puddle of emotions. How is he five and a half? Again, I borrow from my friend talking about losing her mom: "Two years ago today my sweet mama bear was diagnosed with ALS. Two years. Two years. Two of the longest years of my life. Two of the shortest years of my life. Time bends and twists and deceives the eye and heart and mind. Time, you weirdo contortionist." Time is a weirdo contortionist.

What might it be like to raise a child and not have the fear of cancer looming over you every moment? How might those early years have been different? How might today?

This is one of the hardest posts I've ever written.

***

You guys know I haven't written here much lately, and I haven't posted a health update in months. I know you've noticed. Some of you have asked, and I've been vague.

I haven't known where to start. I've wanted to be certain, as certain as one can be when talking about one's health, anyway.

Chris always tells me to start with my elbow.

A skin biopsy at the beginning of the year led to questions about my cancer staging. My oncologist wanted to take me off chemo based on the results, which came back as something called sarcoidosis. I wasn't ready to let go of my chemo safety net. Not because of a pea-sized thing on my freaking elbow.

Then I had a scan in March that lit up like a Christmas tree: in my chest wall, my abdomen, my left lung, my spine, the list goes on. I walked out of my oncologist's office as he was handing me the radiology report. Fuck this, I thought. How does anyone deal with cancer progression? How does one face their spouse after news like that, without exposing every fear simmering under the surface? You just hope your partner is a little stronger than you in those moments. Because one of you must steer the ship, and after reading "likely for metastatic disease" in about five different places, I was in no position to steer anything. Afterward, you hope that your partner will take you out for a drink even though it's the middle of the day.

He does, bless him.

Over the next couple of weeks I underwent a slew of tests to determine what was happening in my body. A spine MRI and a pelvic ultrasound were both "unremarkable" despite showing activity on my PET scan. A lung biopsy left me with a partially collapsed lung and a twelve hour hospital visit, but the results were benign: a granuloma with characteristics of sarcoidosis.

Not cancer. Not this time, at least.

I went for a second opinion at the Mayo Clinic. What the fuck? was my basic question to the oncologist there. "If this is metastatic breast cancer, it's the strangest case of it I've ever seen," he told me, after reviewing my scans from the last four and a half years. "We don't tend to see recurrence after a pathological complete response like you had, not with Her-2+ disease."

Where had he been the last several years of my life?

***

Sarcoidosis is an autoimmune disease that causes inflammation -- typically seen in the lungs, skin, and lymphatic system. They don't know what causes it. Bernie Mac died from complications of it, but it's usually not fatal. While it sometimes goes into remission on its own, the treatment for sarcoidosis is steroids.

Like the ones I'd received with every single chemo infusion over the past fifty-four months.

Three doctors agreed on a course of action: take a break from treatment and re-scan in three months. Those months were a series of panic, panic, Xanax. Like a bad game of duck-duck-goose.

And then my three month scan came at the start of the summer. It was clear as a bell. Clean as a whistle. The radiology report suggested a "complete response to interim treatment," except there hadn't been any interim treatment.

Metastatic cancer doesn't clear up on its own.

I cried big tears in my oncologist's office, part relief, part are you fucking kidding me, part hope that any one of my doctors knew what they were talking about. "I hope those are happy tears," he said. "It's not every day someone gets a miracle like this. This is better than winning the lottery."

To which I say: yes, mostly. I imagine it's also like being wrongfully imprisoned and then released after nearly five years and told to go be happy. I am happy, but this news has required a lot of processing. Like, a shit ton of therapy. I'm still processing. I'm still a puddle of emotions every time I catch a sunset. Or a glimpse of Quinn's thighs.

***

As the news -- that my so-called metastases have always likely been sarcoidosis -- sinks in and starts to seem more real, I have continued to advocate (albeit a little more quietly) on behalf of the MBC community. But it has come to a point where I feel like in order to amplify my voice and those of my friends living with mets, I needed to be able to do so in a way that upheld my integrity, that allowed me to be my most authentic self.

I haven't been restaged, but if I had to guess based on the size of my original tumor and the number of lymph nodes removed during my surgery, I was probably Stage 3A. I don't know if I'll ever know. As one new friend recently put it, "I will always consider you a Stage 4 survivor." But I am no longer considered a metastatic breast cancer patient.

While I have superb insight on what it feels to be one, I feel it is only fair to withdraw myself from Pfizer's Story Half Told campaign, which aims to shed light on the lives of women living with metastatic breast cancer. Pfizer's team has been more than patient with me on the timing of this announcement. But I know that October will be a big push for the campaign and the stories of the women involved. I could not honorably continue as a face of MBC after learning the news I've learned this summer. In no way do I want to distract from my friends who are facing this disease day in and day out.

I will continue to do whatever I can to bring awareness to the men and women living with MBC, to advocate for more research funding, and to bring hope to people that there is life after a terrible diagnosis. In some cases, the details of that diagnosis may even be a terrible mistake. If my story isn't a plug for second (and third) opinions, I don't know what is.

To the few of you who've shared these past few months with me in silence, thank you for holding space for me to grow into this new reality, and for supporting our family as we learn what it means to start over. To the rest of you who have been such a godsend of strength to us these past five years, thanks for standing by us as we adjust to life after cancer.

I always wanted to be an outlier, I just never imagined it would be in this way. Here's to more sunsets. Here's to the ultimate mulligan. Here's to hope. Here's to first grade...and beyond.

On Aging

What the heck, September? PTA meetings and a conference in NYC and turning THIRTY-EIGHT went and sucked up all of my time this month. Thirty-eight -- how did that happen?  PTA MEETINGS! Ha! Who am I?!

A friend wrote a Facebook post the other day about how time is a contortionist. I spent the other night looking at old videos of Quinn, crying my eyes out because where did my sweet toddler go? Who is this five-year-old who thinks it's hilarious to send his dad poop emojis in a text?

And then I looked at those puffy eyes of mine and realized I am super overdue for investing in an effective eye cream. And possibly also some botox. Five years of cancer has aged me and mama is tired.

About a week before I was diagnosed, 2011.

I recently commented on a blog post written by my college friend and author/mom/cook/all-around-badass Amelia Morris. Its themes are something I've been giving more thought to lately (maybe because suddenly I'm old enough that my child is SCHOOL-AGED and also because he regularly tells me I have a squishy belly. "Uh, because of you," I want to respond).

Amelia, a former gymnast, reflects on the Olympic sport of women's artistic gymnastics and the pressure we women feel to have it all and look good while doing so.

She writes:

"And while I agree that our ideas about the female body and its power are, indeed, unresolved, perhaps the gymnasts themselves have it figured out. Aly Raisman is performing world-class gymnastics; she looks good doing it; and (bonus points?) seems to have a really strong sense of self. As for me, as confused as I am—as torn between appreciating my body and criticizing it, between feeling endlessly grateful for motherhood and feeling trapped by it, between wanting to appear effortlessly pretty and wanting to literally put no time or effort into that aim—I remain hopeful for the future."

***

I didn't used to think of myself as high-maintenance, but between my eyebrow tattoos and eyelash extensions to give me a semblance of what I had pre-cancer, the occasional mani/pedi to mask the spot where I'm missing a toenail -- thanks again, chemo and five years of Avon Walks -- and actually having to do something with my hair for the first time in five years (NOT that I'm complaining and even though that something is often a ponytail), I feel decidedly higher maintenance than I'd like. I care about how I look. I wish it were effortless but it just is not any more.

New eyebrows (about 8 months ago)!

And don't even get me started on fillers and lip plumping and teeth whitening. I am not there yet. Yet. But the immobile foreheads of every twenty- and thirty-something in my yoga classes reminds me that I am in the minority. I have a plastic surgeon, yes, but for far more terrifying reasons.

Or maybe this focus on our looks is just a phenomenon where I live? But having read Wednesday Martin's Primates of Park Avenue as part of a book club last year (and every cover of every Star or US Weekly at the newstands ever), I don't think so. Also, Amelia doesn't live in Arizona, either.

Still, as much as I lament the scowl lines in between my tattooed eyebrows, or wish I didn't have such extreme bags under my eyes, as much as I'd love to have Kerry Walsh's washboard abs, my comment on Amy's post was about how it took cancer to allow me to -- almost -- stop criticizing and spend much more time appreciating my post-baby body. How crazy is that? That it took being told I had a deadly disease to learn to pump the brakes on being an ass to myself.

Now, Quinn is 5 (and a half), I have purplish scars across my reconstructed chest, a softer belly than before pregnancy, neuropathy in my right hand from radiation or surgery or both, and an inability to move or stretch in ways I could before cancer because of those surgeries and radiation. So much for the cover of Yoga Journal. 

But I appreciate what my body can do. Hike mountains. Show up to volunteer with a class of kindergarteners. Dive into a late-September pool to the delight of my boy, who knows it's going to be too cold for me (it is). I appreciate what my body has done. Recover from surgeries and radiation. Run marathons. Give birth. Breastfeed. I mean, how awesome is that?! I grew and sustained a LIFE with this body.

I watched this video a while back with tears streaming down my cheeks, and then it showed up again in my Facebook feed a couple of months ago.

I hadn't remembered the part about the women who'd lost their boobs. Pay attention at 2:50. Actually, pay attention to all of it. You are amazing, and beautiful, and strong. All of you. Even at 38 years old.

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.

I Can't Thank You Enough

So it appears I really DID run out of words for a bit.

I've calmed down a little, but then I have moments -- frequent, frequent moments -- where I am not okay all over again. My grief and fear come out in irritability, anxiety, and more goddammits than I'd like to admit. I find myself out of patience more often than not, short with Chris (or worse, Quinn) more than I'd like, and then hard on myself for how shitty these episodes make me feel.

This weekend, Chris was out of town and our new puppy peed on the kitchen floor approximately 45 paper towels' worth of times and Quinn might be going through a growth spurt because he wants to eat all of the things all of the time. And -- oh, man -- his whininess. And my grouchiness. And and and.

Our cat is on Prozac, and this weekend, I thought of borrowing a couple of his pills for myself. (I'm joking. Kind of.)

Last night, Quinn needed help brushing his teeth, and called for me. I was moving the dog's crate into my bedroom and didn't respond immediately. My hands were full. Quinn got cranky and snapped at me a couple of seconds later, a full-on yell with a little bit of desperation in his voice: "MOM, I SAID I NEEDED HELP!!" I was already on my way to his bathroom door, showed up a second later, and asked him to remember his patience. "I'm doing the best I can, buddy."

But am I really? I yelled approximately eighteen times yesterday, exhausted and at the end of my rope and just over it.

Quinn is my mirror. These are my faults reflected back at me. Sometimes I really don't like what I see.

My resolution for 2016? Work on my patience. Breathe more. Be mindful in my relationships at home. See less of "mean mommy," who is angry and scared and prone to swearing in front of her 4-year-old, sometimes about dog pee, which is really not his fault in the slightest.

***

On the drive to my oncologist's office this morning, I listened to Diane Rehm interview Carly Simon about her memoir Boys in the Trees. Simon was talking about a song she co-wrote with her son after an argument between them in which he'd said something quite hurtful. He'd immediately followed her upstairs to apologize. She was crying, and sat down with her guitar to come up with the first verse of "I Can't Thank You Enough." When she sang it to him, he asked if he could help write the rest of it.

So of course I was a blubbering idiot driving to my doctor's office (where I'm now sitting getting my thrice-weekly infusion of Kadcyla). But this came exactly when I needed it, and might be the song I request to dance with Quinn at his wedding. In the meantime, I'll listen to it when I need a reminder to be more careful with my words...or a good cry.

I Am Out of Words and My Heart is Broken

You'd think that with upwards of 112 of us dying every. single. day, the blows wouldn't be quite so crushing at this point. That perhaps we'd get used to it. Become numb, maybe. Like the rest of the world sometimes seems to be to our plight.

But every so often, a death (or group of deaths) comes along and it feels like we've collectively been punched in the gut. Our hearts ache. We are angry, and scared, and fucking tired. But we know we've got to carry on this fight -- even as we receive chemotherapy and take care of our children and look into clinical trials and try to enjoy every moment because we know more than most how limited time can be -- because who else will fight for us?

Who?

Forty thousand American women lose their lives every year to breast cancer, and yet researchers at the San Antonio Breast Cancer Symposium -- the LARGEST conference in the country addressing breast cancer research -- had almost nothing to say about metastatic disease this year. I was there. I waited for a breakthrough announcement. I listened to the recaps afterward, hoping I'd missed something significant.

Instead: "The mets research isn't ready for prime-time," is what I heard.

How long do we have to wait? Since my diagnosis, approximately 173,333 women have died of breast cancer in the U.S. alone.

"How can we express our urgency?" we asked.

"We get it, just keep doing what you're doing," we were told.

BUT CLEARLY IT IS NOT "GOTTEN" when nearly 8,000 clinicians can gather and have no news about stopping metastatic cancer, the only breast cancer that kills. Instead, we hear case studies about drugs extending our lives by a few months. 

A few months doesn't get me to see Quinn start kindergarten. A few months is not even close to enough. 

A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World.

On Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof -- gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be.

I am angry, and I am terrified. And this weekend, I felt like maybe we as advocates aren't doing enough to make our voices heard, like we let Adrienne (and about six others in my direct circle this week) down. But we can only do so much. We are exhausted, and doing our best.

Who else will fight with us?

I am at chemo today, 4 days before Christmas, wondering how I'm going to get everything done that needs to be done this week to create magic for my little boy because that's what my parents did for me, but also feeling so very lucky just to be here another holiday season. How deranged is that, to have to wonder about whether this Christmas might be your last because the average lifespan after a metastatic breast cancer diagnosis is 33 months.

At 52 months and counting, I am on high alert for when that other shoe might drop. Yes, I have hope I'll be here long-term. But I also know the realities of this disease. They've been especially hard to face this past week.

Quinn asked me what was wrong several times on Saturday, as I sank to the kitchen floor in my grief or cried as I heard the lyrics, "Home is wherever I'm with you..." on the radio while we tried to get in some last-minute Christmas shopping. He offered me big, strong, bear hugs, and all I could manage to tell him was that a friend of mommy's got some bad news.

What else is there to say to a four-year-old?

The truth is, I do not know what to say anymore. My heart is broken. Shattered in about 112 pieces today alone.

Please, please help us.

The Season for Hope

Many of you know my good news already, that my scans last week before Thanksgiving continued to show no evidence of cancer. What a way to go into the Thanksgiving holiday. And that sound you may have heard? That was Chris and me finally exhaling after 48 hours of holding our breath waiting on results.

As the stress started to dissipate, I came down with another sinus infection and had chemo last week (plus a lunch with Arizona's Governor -- a story for another post, maybe -- and hosted a cookie decorating party with a dozen or so preschoolers over the weekend), so I've disappeared a bit from this space. I've been busy living, which is pretty wonderful. I am so very lucky for this beautiful life.

Incredibly thankful for this goofy and handsome dude (who could almost not stop saying "turkey!" today). From our family to yours, happy thanksgiving. This life is such a joy. 🍁🍾😊

A photo posted by Jen Campisano (@jencampisano) on Nov 26, 2015 at 9:24pm PST

But I've also been hesitant to talk about my good news too much, in part because so many of my friends are facing disease progression, chemo regimen changes, or the unknown of clinical trials over the last couple of months. These friends post photos from hospital beds of them with their children, and my heart aches for them. Or they post that they have to leave their families -- now, at this time of year, just to emphasize the magnitude of the injustice of it -- to take part in clinical trials to try to put the brakes on their particular form of breast cancer.

Maybe this drug will be the one that finally stops it. 

Maybe this won't be my last Christmas with my kiddos. 

Maybe I can walk today, despite the pain in my bones from cancer's spread. 

I've become a part of this community. These women are my friends. My diagnosis wasn't terribly dissimilar to many of theirs. In some ways, it was worse, since I was metastatic from the outset while many of them thought they were safe with an early-stage diagnosis. My luck could change at any moment, and their stories could be my story. But for now, I'm relatively healthy.

That is no minor thing. As the saying goes, when you have your health, you have everything. I am so very, very lucky. I try to remember that every day.

***

As Quinn and I were putting up Christmas decorations the other day, listening to Holiday Classics on iTunes, "O Holy Night" started playing. We are not a religious family, but it's still my favorite Christmas song. I choked up, watching my son choose where to put ornaments and feeling beyond fortunate that I get to be here to see it.

And then I started crying as I strung the lights, thinking about my friends whose cancer situations are worsening or who are spending this season without family members because of cancer. The music wasn't helping. I'm blaming you, Mariah Carey.

Is this survivor's guilt? Can you really have survivor's guilt when you've been diagnosed with an incurable cancer? Do the holidays make everyone more emotional? Or is it just the sugar highs (and subsequent crashes)? Maybe I just need a break from Chex Mix.

***
Chris is in the town where he grew up the first half of this week, wrapping up things with his mom's estate: a visit to the DMV, a meeting with her accountant, closing of bank accounts, that sort of thing. We have had our own significant loss this year, and it is going to be a tough holiday without my mother-in-law around.

Later this week, I am headed to San Antonio, to attend a program as part of the annual breast cancer symposium there. I am hoping to learn about advances in research and new ideas in the pipeline for eradicating this disease. I am hoping to bring some more good news back to this community of mine, some more reasons for hope.

After all, it is the season for it.

"I May Only Have One Match..."

Almost every week, I hear from one or more of you who are reaching out to me for the first time. Sometimes, you're newly diagnosed; other times, you've been following along for awhile but thought now would be a good time to say hello for one reason or another. Thank you for being my community. It is why I do what I do in this little space here.

At the conference I attended in New Jersey back in April, one of the presenters, Susannah Fox, put it along the lines of this: Patients are out there in a sort of darkness. As patient-advocates, you've lit a match and said, "Hey, I'm over here. Let's find our way through this together." 

Thank you for finding me. Let's find our way through this.

Speaking of lighting a match...

Around the Web: Italy Edition

Thanks for the great feedback about keeping this series here. (Although it seems as if once a month might be my posting schedule for a lil' bit.) I've been pulled in a lot of different directions lately, not all of them deserving complaint. And to all who checked in and suggested I stop to get some rest, I've taken note, I promise.

As I write this, we are were in the midst of reconnecting with each other as a family in Italy. The month prior to our trip felt like a strange square dance in which Chris and I kept passing Quinn off to one another without stopping to a) dance with each other or b) rest our feet as a family. We've needed this time for awhile.

This was my first time to Italy, and I wanted to pinch myself at every passing gondola or square with a lion-spitting fountain in its center. There have been moments since we arrived when I've caught my breath in my throat to ward off tears because these are things that a couple of years ago I thought I might never get to experience.

I might never come back. (Spoiler alert: I came back. But I'm still considering a future move to a pied-à-terre in Rome, on the off-chance I could get my insurance to approve Kadcyla infusions abroad and convince Chris that a sabbatical there makes sense.)

We're doing a lot of walking, so I'm not sure we'll get much actual rest for our feet, but we're being fueled by pasta and wine and gelato so I think we'll be okay.  We averaged more than six miles a day, and Quinn kept up like a champ. We were more than okay. Now that I'm home, my body actually craves the movement...and the gelato. More on how to do a trip to Italy with a 4-year-old coming up in a post soonish.

Posts might be a little spotty here for a couple of weeks, but I'll try to manage an occasional photo of my bambino enjoying the sights. We had really terrible internet coverage when we had it at all, then I was too jet-lagged to even form sentences for a couple of days, and then I had chemo on Friday so I'm still having trouble forming sentences. But I do hope you saw some of the photos of Quinn over on my Instagram account.

A photo posted by Jen Campisano (@jencampisano) on Jun 1, 2015 at 1:07pm PDT

Here's what I've seen around the web the last couple of weeks month. If you have something you'd like me to include in future editions, please send me an email (jen dot campisano at gmail).

Grazie, bellas!

There Was This Depravity (Or, Pay Close Attention to Where and to Whom You Give Your Money)

"In its complaint, the F.T.C. called all four of the cancer groups “sham charities,” charging the organizations with deceiving donors and misusing millions of dollars in donations, including putting money toward personal expenses like carwashes and college tuition, from 2008 to 2012."

There Was This Loss

“Of course I wish I had more time,” she told the Jewish newspaper The Forward in 2009, after learning that her cancer had returned. “I would love to see grandchildren, to see weddings, to be a part of these amazing things for more time, but I love life and don’t want to spend any of it mourning the loss of that which I can’t have. I’d much rather embrace that which I do.”

And This One, Which Seemed to Shake Our Entire Nation

""It is with broken hearts that Hallie, Hunter, Ashley, Jill and I announce the passing of our husband, brother and son, Beau, after he battled brain cancer with the same integrity, courage and strength he demonstrated every day of his life," Joe Biden said in a statement issued by the White House."

But also some uplifting news...

New Device Brings Us Closer to Understanding Metastases

"Metastasis occurs when cancer cells break away from a tumor and travel to distant parts of the body—the most dreaded event for a cancer patient. It is a mystery why some cells are able to travel through the body while others are not. Researchers from the University of Michigan, comprising a team of oncologists and engineers, have developed a new technology to help unlock this code.

A groundbreaking new study released in “Scientific Reports” describes a device that is able to sort cells based on their ability to move. The device allows researchers to take the sorted cells and compare the ones that are highly mobile to the ones that are less mobile. Understanding the differences in gene expression between these two types of cells can help identify why some cancer cells can spread to other parts of the body."

And a Potential Solution for Overcoming Her-2+ Drug Resistance

To be clear, this is still in the earliest, pre-drug stages. Super cool stuff nonetheless.

"There are currently no approved treatments that specifically target the ability of HER2 cells to join together or with other proteins, an essential first step in tumor growth. Lupu and her colleagues are now confirming the antitumor activity of this potential HER2 “master switch” in animal models. They will then move on to clinical testing, and the investigation of drugs—such as mimetic agents, targeted antibodies, and small molecules—that could specifically block this site responsible for HER2’s oncogenic potential.

“This drug does not yet exist; it is a promising area of future research,” said Lupu. “We believe that there is definitely hope because this is the first time that anybody has identified any region that blocks homodimerization and heterodimerization, which will simplify the treatment of the cancer. Rather than combining two, three or four drugs together, this will be a one-stop-shop.”"

How Breast Cancer Spreads to Bones -- And a Simple Way to Stop It

In my mind, this is HUGE news.

"Breast cancers can manipulate the structure of bone to make it easier to spread there, a study has found.

Researchers at the University of Sheffield said the tumours were effectively "fertilising" the bone to help themselves grow.

The study, in the journal Nature, said it may be possible to protect bone from a tumour's nefarious influence and consequently stop the cancer's spread. . . .

The animal tests also showed that a set of osteoporosis drugs called bisphosphonates could prevent the spread of cancer.

Bisphosphonates also interfere with the way bone is recycled in order to strengthen it.

They are already given to some cancer patients, but the Sheffield team believe they could have a much larger role."

Promising Early-Phase Clinical Trial Results Against Stage IV Her-2+ Breast Cancer 

"Promising clinical trial results presented at the American Society for Clinical Oncology (ASCO) Annual Meeting 2015 show activity of the investigational anti-cancer agent ONT-380 against HER2+ breast cancer, in one case specifically against brain metastases and in another case in overall survival of heavily pretreated HER2+ breast cancer patients.

"I am thrilled to have been able to offer this therapy to a patient in her early 40s. She didn't have any other great treatment options that we would have expected to have any meaningful impact, especially on her brain. Now she's been on the study over a year. The mets in her body are gone and the brain lesion has shrunk down to a little nubbin. She's living a normal life, fretting about the family business and how the kids are doing -- normal stuff," says Virginia Borges, MD, MMSc, director of the Breast Cancer Research Program and Young Women's Breast Cancer Translational Program at the University of Colorado Cancer Center and one of the study's authors."

Study Shows Complete Response for Some Patients with Metastatic TNBC 

"Immunomedics, Inc., (IMMU) today announced that among 49 patients with metastatic triple-negative breast cancer (TNBC) evaluated for response to treatments with sacituzumab govitecan in a mid-stage clinical study, 31%, or 15 patients, showed a reduction in tumor size of 30% or more. They include 2 patients with complete response. Response assessments were based on the rules set by the Response Evaluation Criteria In Solid Tumors (RECIST 1.1). Adding the 22 patients with responses between less than 30% tumor shrinkage and less than 20% tumor increase, the disease control rate was 76%. . . .

The U.S. Food and Drug Administration has designated sacituzumab govitecan a Fast Track development program for the treatment of patients with TNBC who have failed prior therapies for metastatic disease and patients with small-cell or non-small cell lung cancers."

And Promising News on the Cancer Front in General (out of the ASCO 2015 Annual Meeting)

"A new drug that unleashes the body’s immune system to attack tumors can prolong the lives of people with the most common form of lung cancer, doctors reported on Friday, the latest example of the significant results being achieved by this new class of medicines.

In a separate study, researchers said they had found that a particular genetic signature in the tumor can help predict which patients could benefit from the immune-boosting drugs.

The finding could potentially extend use of these drugs to some patients with colorectal cancer, prostate cancer and other tumors that have seemed almost impervious to the new drugs. Most of the substantial results so far with these expensive drugs have been in treating melanoma and lung cancer."

A Way to Eliminate Many Types of Cancer Cells -- At Least in Mice

"A type of immune cell can be primed to attack and eliminate various kinds of malignant cancers in mice, according to a study by Stanford University School of Medicine researchers.

The researchers studied mouse models of melanoma, pancreatic, breast and lung cancer and found that their technique could eliminate not only primary tumors, but also distant metastases throughout the body.

“The potency is impressive,” said Edgar Engleman, MD, PhD, a professor of pathology and of medicine at Stanford and the senior author of the study. “You actually see tumor eradication.”"

Around the Web: Overdue Edition

Every few weeks, Quinn and I go to the Scottsdale Public Library, which has a superb children's section. There are painted moats on the floor and real castle walls and a drawbridge that leads the way into a reading nook. There are legos for building, a giant stuffed dragon for riding, puppets and a stage for creating stories, and age-appropriate games housed on iPad learning centers. It's a wonderful space. But still, we forget (and by "we," I mean "I") to return in time to get our books in when they're due. I end up logging into my account online and renewing our checked-out books to avoid a late fee and a 15-minute drive.

{We have always loved reading together. Sept. 2012}

Much like our beloved library books, this "Around the Web" series is long overdue for a renewal. Or at least an update, since research is (by all accounts I can find) still happening. Progress, though sometimes achingly slow, is being made.

I don't even know if you guys come here for the research I sometimes post, but I think some of you might. I also think it's important (for my own sanity, if nothing else) to take note of the advances being made on the research side of things. To laud the glimmers of hope out there. Some of them are starting to shine pretty brightly.

***

At the conference I attended in New Jersey a couple of weeks ago, I wondered if I was somewhat of an imposter being at this summit for Online Health Advocates. Was I one? Could I fill those shoes? I mentioned once or twice that I didn't feel so much like an advocate as I did a storyteller, to which a couple of other attendees told me, "Nonsense. That is how we advocate, how we connect with people, through our stories."

Stepping into the role of advocate a bit more fully, for me, means keeping up a little better with the science side of things. (As long as it's not organic chemistry.) I used to be a lobbyist, in my former life back in DC. Yes, stories are how we connect, but when you're sitting in a wonk's office you also better know a little something about the guts of your subject matter. Where is progress being made? What research is most promising? How is it being funded? How can Congress help? I'm exploring a few opportunities that I hope will help me dive even deeper into this arena, and in that vein I'll be brushing the dust off my shoulders to participate in the National Breast Cancer Coalition's annual lobby day before Congress when I'm in DC next week.

{Photo: Mike Boening Photography}

After I walk 39.3 miles.

In the meantime I'm wondering if this is the right format -- or platform even -- for these posts on the research I cull from around the web. What do you think? Keep them here? Or would you subscribe to a newsletter if I promised to keep up with it? Please let me know what you think. And for now, here's the best of what I've found over the past month. (Like I said, overdue!)

Embracing My Inner Pollyanna

via Ann Silberman

"Some cases of metastatic breast cancer are already cured, Sledge said: in the adjuvant setting, where it is micrometastatic disease but still metastatic; and with oligometastatic breast cancer, as the CALOR (Chemotherapy for Isolated Locoregional Recurrence of Breast Cancer) trial has shown recently (Aebi et al. Lancet Oncology 2014;2:156-163).

'So the question is not why can't we cure, but rather why don't we cure more?' he said."

Because Scientists are Doing Things Like This

"Investigators from Massachusetts General Hospital (MGH) and the Harvard Stem Cell Institute have developed an imageable mouse model of brain-metastatic breast cancer and shown the potential of a stem-cell-based therapy to eliminate metastatic cells from the brain and prolong survival. The study published online in the journal Brain also describes a strategy of preventing the potential negative consequences of stem cell therapy.

"Metastatic brain tumors - often from lung, breast or skin cancers - are the most commonly observed tumors within the brain and account for about 30 percent of advanced breast cancer metastases," says Khalid Shah, MS, PhD, director of the Molecular Neurotherapy and Imaging Laboratory in the MGH Departments of Radiology and Neurology, who led the study. "Our results are the first to provide insight into ways of targeting brain metastases with stem-cell-directed molecules that specifically induce the death of tumor cells and then eliminating the therapeutic stem cells.""

Scientists are SO FREAKING COOL.

A Switch to Tame Triple-Negative Breast Cancer?

"Australian researchers have found that so-called 'triple-negative breast cancers'1 are two distinct diseases that likely originate from different cell types. This helps explain why survival prospects for women with the diagnosis tend to be either very good or very bad.

The Sydney-based research team has found a gene that drives the aggressive disease, and hopes to find a way to 'switch it off'."

Promising Outcomes from Early Phase Trials for Metastatic Triple Negative BC

"The high mutation rate of triple-negative breast cancer, which can produce neoantigens that induce an immune response, makes it a candidate for cancer immunotherapy, in particular PD-L1-targeted therapies. In addition, patients with triple-negative breast cancer with high levels of tumor-infiltrating lymphocytes (TILs), have improved outcomes, Emens said."

And for Her-2+ Metastatic Breast Cancers, As Well

""We also saw responses in these women, particularly in those that were anthracycline-naïve," continued LoRusso. "Given that many of the patients had disease that had progressed following treatment with trastuzumab [Herceptin], T-DM1 [Kadcyla], and pertuzumab [Perjeta], these results are encouraging and led to the ongoing randomized, phase II HERMIONE clinical trial, which is testing whether MM-302 plus trastuzumab is more effective than chemotherapy of physician's choice plus trastuzumab for locally advanced/metastatic, HER2-positive breast cancer.

"If the results of HERMIONE are positive, MM-302 may provide another therapeutic option for women with HER2-positive breast cancer," LoRusso added."

Plus a New Signaling Pathway Discovered in Her-2+ Breast Cancer Cells

THIS: "One of the most promising ideas in cancer treatment is to apply a lesson learned in the fight against AIDS (Acquired Immune Deficiency Syndrome): simultaneously attacking a pathological process at different points of weakness can, in some cases, deal a knock-out blow. Just as the so-called AIDS "cocktail" directs multiple agents against multiple targets, so too might future anti-cancer cocktails be directed at multiple, highly specific targets in known cancer pathways."

Don't Worry, Scientists are Finding Ways to Halt Hormone-Driven Cancer, Too

"An experimental drug rapidly shrinks most tumors in a mouse model of human breast cancer, researchers report in the Proceedings of the National Academy of Sciences. When mice were treated with the experimental drug, BHPI, “the tumors immediately stopped growing and began shrinking rapidly,” said University of Illinois biochemistry professor and senior author David Shapiro. “In just 10 days, 48 out of the 52 tumors stopped growing, and most shrank 30 to 50 percent.”"

There's a Lot of Buzz About the Future of "Liquid Biopsies"

"But eventually, we’ll begin to match specific clinical outcomes, such as therapy response, with the circulating DNA that is sequenced. We’re also working on building databases that will show which cancer drugs work most effectively with which cancers at a genetic level. We’re moving forward with this research at an exciting pace; in the next five to ten years, it’s going to make a tremendous difference in how we practice medicine."

The Psychology of Living with Advanced Cancer

“We’re all terminal,” Bellizzi says. “We’re all dying with each passing day, and there’s no way to get around that. I have found that starting my day with that thought helps me change my priorities and perspective. I try to never forget to tell people I love that I love them. If I get in a fight with a family member, I make sure to fix that before I go to bed. We don’t know what’s around the corner. I think it helps us live that way by reminding ourselves that it’s not cancer but life that’s a terminal condition.”

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

{image source}

Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.