Wasn't it just Christmas? Where did January go? How are the Seahawks not in the Super Bowl?
I've spent January mourning the losses in our metastatic community, trying to enjoy sleep-deprived new-puppy-parenthood, briefly visiting my brother and his family in Spokane, and making room for a few other advocacy endeavors I've got going (stay tuned!) Not to mention start-of-the-year doctors' visits, dental check-ups, and a biopsy of a weird spot on my elbow thanks to an overly-cautious dermatologist.
I haven't found much time to collect my thoughts these past few weeks. I've been waiting for my words to come back. Waiting for my anger to subside.
Related, I find, to letting go of some anger is me trying to work on my patience. It was my one resolution for 2016. As one mama put it on theglow.com:
"Nothing is more important than the right now, so focus on right now." Yes, a million times this.
Last night I dreamt that I had a bad PET scan, even though I'm not due to cross that bridge for another couple of months. I dreamt that I had to start broad-spectrum chemo again, that I was losing my hair but didn't tell anyone until my friend noticed I was wearing a wig at Pilates. I woke myself up crying. Scared. Angry. Quinn was in our bed, between Chris and me, and I snuggled up against him, inhaling his little boy scent, feeling the reality of his warmth and the steadiness of his breath until I was able to steady my own. It was -- for now -- just a bad dream.
Nothing is more important than the right now, even at 3:30 in the morning. But, man, do cancer and mortality and friends dying know how to mess with a girl's subconscious. My nurse (and friend) at my infusion center tells me there's a pattern to these deaths, that she's been doing this long enough to know January is the worst. People set goals for the holidays.
In that case, I'm setting a goal for Christmas of 2074.
I hope to get back to some sort of regularity here sometime soon, but in the meantime I've been busy focusing on the right now -- busy with soccer practices and birthday parties and puppy hikes (much shorter than regular hikes) and trying to think of ways to better serve this metastatic community to which I belong. As I said, I have some things brewing. I hope they'll pan out. I hope they'll make you guys proud. Please bear with me.
WE'VE ALMOST DONE IT!!! October is just about done. And thank god, except it means my November scans are right around the corner.
Since my diagnosis, not a day has gone by that I haven't thought of breast cancer, at least a little bit, but that is amplified SO LOUD in October, and not always in ways that help. Then scanxiety sets in (albeit on the early side AGAIN this time around) and I start popping Xanax every night like it's a vitamin. I am so lucky in so many ways, but also so tired sometimes. This disease can wear you out.
In my frustration with things like the NFL fining one of its players for trying to honor his dead mother and my general October-and-scan-induced edginess, I've found myself having to explain to Quinn what it means to have a short fuse because mine has been downright itsy-bitsy.
I haven't felt like the best mom, and this blog post about swearing in front of your children hit very, very, very close to home.
In front of Quinn, I try to say "sugarfoot" or "son of a gun" or "fudge knuckle" or some other hokey variation on actual swear words but I don't always get it right because that is not always what I actually deep-down WANT to say. And I don't ever swear at Quinn, so much as say things like, "You're smart. USE YOUR BRAIN," when he's asked me why he has to use his napkin instead of his shirt for the twelve-thousandth time. So that's not exactly nice parenting. And then I might swear AT traffic when Quinn is in the car with me, and I don't know if that's any better.
I've also found myself crying real, actual tears when Quinn told me a couple of weeks ago that Loki (our cat who frequently scratches at our dining room chairs and occasionally throws up all over our fabric couch but never on the hardwood floors) is his favorite "person" in our family. Oh, how that boy loves that cat. I might have been a little offended, which is of course a little ridiculous.
Sometimes I think I need my therapist on speed-dial. (Is there even such a thing as speed-dial anymore?)
***
I had a dream the other night that Quinn was as tall as me, and I got to see him -- even in the haziness of my dreams, as a 65-inch-tall boy who was almost a young man. He was perfect and handsome and pure goodness.
I woke up with a tightening in my chest that hasn't quite gone away the last few days. Am I over-doing it at Pilates? Is my anxiety giving me near-constant panic attacks? Are there tumors growing in my chest wall again?
Will I get to see my boy be as tall as me in real life?
I have had so many friends find out they have progression this month -- in their brains, lungs, stomach, spine, skin, the list goes on and on -- and the truth is, I am scared shitless that the boogeyman who is cancer could show back up in my life again at any moment. Metastatic breast cancer is THAT unpredictable, and as amazing as some treatments are, there is still no cure. My fear has been acting out this month, and maybe it does every October. It's a spooky fucking month.
(Sometimes substitute words are just not at all adequate.)
***
I wrote all this, and then I went to a yoga benefit class tonight for City of Hope, a cancer treatment center and research facility. I dragged myself there, is more like it. I didn't want to go, didn't want to navigate my way downtown and to the venue and deal with traffic and find parking and all of the STUFF that goes with getting somewhere on a Friday night. (Hello, middle-age, nice to meet you!)
I practiced yoga with a bunch of other people on the field where the Diamondbacks play, did my forward folds and crow poses and shoulder stands under the stadium lights, which was totally surreal. I slowed down a bit. I was reminded to breathe. And you know what? It helped. I might not need a Xanax tonight.
Ever since my breast cancer diagnosis, October has become a doozy of a month. I don't know if it's this way for everyone who goes through breast cancer, but I suspect it's tough for most of us who've been told our cancer has spread, that it's no longer considered curable.
It is hard to see the sea of pink -- in the seat-back pockets on my flight home from Missouri on Sunday, there was a flyer telling me I could buy a $2 pink lemonade to support breast cancer awareness. I wanted to scream about how aware I actually am. But Quinn was sleeping on my lap and an elderly woman was sitting beside me, on her way to help her daughter who'd just had hip surgery, so I kept my mouth shut. I raged on the inside.
It was even tough to watch Sunday football with my dad, and not just because the Seahawks keep freezing in the 4th quarter and losing games they should be winning. Pink goal posts and cleats and towels aren't contributing much to the cause they claim to support, and -- at best -- we inch toward better treatments, a few more months of survival (when the average after a mets diagnosis is 3 years), and if we're lucky, milder side effects.
All the while, the general population continues to believe that breast cancer is curable, we need to save the tatas, and early detection saves everyone.
I am exhausted, and it's okay if I blame October for that, right?
To me, this is the great injustice of this sea of pink, these calls to support awareness everywhere you look, most of it not doing much more than marketing products wrapped in pink. I used to think that both awareness and research were important. Now I wonder: Who is not aware?
But also, what do most people really know?
Breast Cancer Education Month doesn't really have the same ring to it.
According to the Story Half Told project I took part in, "Fifty percent of people surveyed said that breast cancer progresses because either patients did not take the right treatments or preventative measures." AND ALSO: "More than 60% say they know little to nothing about metastatic breast cancer." (emphasis mine)
*& %!)%#@!
A man I met a few years ago was saddened to tell me that his mom had beat breast cancer but couldn't beat brain cancer. My bet is that she never had brain cancer, but rather breast cancer that metastasized to her brain. She didn't die of brain cancer, she died of breast cancer. But I did not want to argue with a grieving son, so I simply told him I was sorry.
***
I try to be careful about the language I use. I no longer say I have metastatic breast cancer but rather that I was diagnosed with metastatic breast cancer more than four years ago. Do you see the difference? I don't know whether it changes anything and perhaps it's just superstition. I couldn't even bring myself to participate in a die-in (as proud as I am of the waves these women are making) because I don't want to say I'm dying of breast cancer -- even if 98% of people with this diagnosis do die of it. I have to hope I'll be part of the two percent.
Why does language matter so much? Why do we who've been diagnosed with metastatic breast cancer care whether you know what the word metastatic means?
A photo posted by Jen Campisano (@jencampisano) on
Why are we over awareness?
We're really tired of our friends dying, for one. We're scared we will be next, even when we hope we'll live to see the next milestone: our child graduating, or getting married, or learning to tie his shoelaces.
I have nightmares about cancer, in the form of unwanted guests, or sharks trying to come onto shore to attack me, or burglars trying to break into my house, and I wake up sobbing and unable to relax enough to fall back asleep without the help of sleep aids.
We want people to understand how scared AND how hopeful we are, more than they will ever learn by purchasing a can of pink lemonade. We hope that one day these campaigns will go beyond awareness and actually do some educating so women (and men) will know their risk, understand what as many as 250,000 of us are living with every day, and maybe start turning some of the pink consumerism into research dollars that will help us have fewer nightmares and celebrate more milestones.
Instead of buying pink stuff this year, please consider donating to a reputable organization that provides money for research. Here are a few I like, in no particular order.
METAvivor.org -- the only organization solely focused on research into metastatic disease BCRFcure.org -- funds the largest project focused on metastasis in the world; highest rated breast cancer charity in the U.S. according to Charity Watch Avon Foundation -- contributes to critical research AND provides support services for under-served patient populations Young Survival Coalition -- support for women diagnosed under the age of 40
A photo posted by Jen Campisano (@jencampisano) on
Between chemo last Monday, Thanksgiving on Thursday, and family in town, I hardly turned on my computer. My dad and his wife came to visit for the week. We only debated a little bit about the recent elections, we ate turkey and pumpkin pie until our bellies ached, and we watched football (where Chris and Quinn cheered for the "Go Niners" and the rest of us celebrated the Seahawks).
And we adopted a dog.
It was exactly the week I needed. How about you? How did you spend your holiday?
Now to panic since it's December and I haven't started Christmas shopping yet. In the meantime, here's what caught my attention on the web over the past couple of weeks.
"The team determined that the tumors had developed six different mutations that led to drug resistance. But the result of all these mutations was the same: The tumors had lost the ability to express a protein called PTEN.
The findings suggest a new approach for combating drug resistance by taking advantage of the fact that not all PI3K inhibitors work using the same mechanism."
They're not talking about dieting to starve a cancer cell.
"Blocking cancer cells' ability to generate the energy they need to grow and divide is an exciting new avenue for future cancer treatments. This research suggests that MCT inhibitors may be particularly effective against breast cancer 'stem cells' that can resist other treatments, and could prevent the cancer from coming back - but further work is needed to find out if these drugs can help patients. Cancer Research UK is funding trials of these drugs in a range of cancer types."
Before they settle down and form tumors, before they metastasize.
"Once they identified the cancer cells, the researchers were able to separate them from normal cells. This ability to isolate, culture and grow the cancer cells will allow researchers to zero in on the cancer cells that matter to the health of the patient. Most circulating tumor cells may not metastasize, and analysis of the cancer cells could identify those that will."
"For Mimi Cavalheiro, who is genetically at risk for both breast and ovarian cancers, the question of a diagnosis is not an “if” but “when.”
Cavalheiro is one of about 100 Bay Area women between 35 and 50 years old with the BRCA1 or BRCA2 mutations who are participating in a clinical trial that is examining changes in cardiovascular health, bone density, sexual function, quality of life and other effects on women who go into early menopause."
We're talking about the BRCA1 and BRCA2 gene mutations again here.
"Women who are genetically susceptible to breast cancer and develop it in one breast are at higher than average risk for a tumor in the other breast, and that risk may increase as time goes on, according to a new analysis."
Memorial Sloan Kettering scientists may have some answers.
"'For the first time, it might be feasible to develop a reliable diagnostic test to help guide treatment decisions by predicting who will respond,' says physician-scientist Timothy Chan, who led the research. The findings could also inspire new research that potentially may lead to more-powerful immunotherapies for melanoma as well as for other cancers."
“This is really the way of the future,” Steensma said. “We are going to be practicing medicine not based on how cells look under the microscope, but rather on what makes a disease tick.”
In the chaos of the last week, I realized I've fallen behind on posting my finds from around the Internet (which I referred to as the "web" in a conversation with my college-age nephew this weekend, and he looked at me like I was eighty). Here are the things that have grabbed my attention over the last couple of weeks. There has been a lot, given that it's Breast Cancer Awareness Month, so I've tried to whittle it down.
I am so incredibly fortunate that we have excellent health insurance. The year I had my bilateral mastectomy, insurance covered more than $250,000 worth of bills for us. My targeted chemo costs more than $10,000 per month. Not to mention, most people (me included) struggle to maintain a job while going through treatment, so then how do they maintain health insurance coverage if they're not married? The Affordable Care Act was a solid first step, but more could be done to ensure access to care without fearing that you'll have to file bankruptcy.
"Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group.
That is the longest amount of time for a drug used as an initial treatment for metastatic breast cancer, the researchers said, and it may be one of the longest for the treatment of any cancer."
While this drug worked for me, I ultimately had a recurrence while on it. But I am doing remarkably well on the next-generation of drug produced by Genentech/Roche (Kadcyla). We need continuing research into how to stop metastatic cancer.
"Marathon Barbie," as she was known, was serving our country in Kandahar, Afghanistan, when she found her lump. Maybe it's because my baby brother just came home from there that this story hit so close to home to me. You don't expect cancer to be the thing that kills you when you deploy to a war zone.
"Susan G. Komen has awarded more than $2 million in grants for cancer researchers at the University of North Carolina at Chapel Hill and Duke University, the breast cancer organization announced Wednesday."
"Harvard Medical School investigators at the Massachusetts General Hospital Cancer Center pinpointed several different classes of pancreatic CTCs and found unexpected factors that may prove to be targets for improved treatment of the deadly tumor."
"so before you gag at all the pink products this month, know that many help raise a lot of money. do your research. it’s like the ice bucket challenge. it’s cool to do it and send in a donation. not as cool to do it just to be funny and not contribute a penny. if you can afford a device to record a video, you can afford to donate $5."
