WEGO Health Awards

I'm not sure which one of you did it, but whoever nominated me for not one but two WEGO Health Awards (Best in Show: Blog and Patient Leader Hero) -- THANK YOU!

Some beautiful soul named Rhonda had this to say:

 Jen isn't "just" a patient leader hero. She is THE HERO of all time! The energy Jen gives off is welcoming, wise, & w/ those things brings a level of comfort. You don't have to chat w/ her long before realizing she is INCREDIBLE. From a *terminal* cancer DX to navigating parenthood & autoimmune disease, Jen is here. Sharing. Loving. LIVING. <3   — Rhonda

It means the world to have my work here recognized. As I change yet another diaper or wash another bottle (how do the dried bits of formula get so glued up into the nipples, anyway?!) and feel like I'm not doing as much advocacy or policy work or writing as I'd like lately, it made me a little teary-eyed just to be nominated.

To be fair, we also went on vacation last week, where I was still very much changing diapers, just with prettier views.

I've got to figure out a way to advocate from Hawaii...

In the meantime, here is a truth I've learned, and I think the attribution goes to Madeleine Albright: as a woman, you might be able to have it all, but not all at once. You can go on vacation to celebrate a friend's one-year cancerversary, you can have a kick-ass career (or so I've heard), you can have children and/or pets and be a good mom to them, you can volunteer for organizations that make your heart sing, you can cook homemade meals every night, you can write a memoir, and you can run marathons or hold a handstand in yoga. You just cannot do all these things at once.

Especially don't try to do a handstand while making dinner. You are not Dr. Seuss.

Because this advocacy work (and stay at home mom work!) isn't often paid, and because my husband has a job that expects him to be in the office (the gall), I can't say yes to every opportunity. As much as I'd like to learn more about the science of breast cancer or how to be a better advocate or lend my voice to try to talk some sense into Congress, it's not always feasible, with a 7-month-old and a 7-year-old to take care of. To be honest, I have felt wholly deflated more than once this year because I've had to turn down pretty incredible experiences due to a lack of childcare.

And then the one conference I did attend, I missed the dickens out of my kids. Ah, parenting.

But also, those who say they want to hear and incorporate patient voices could be better about compensating patients, am I right? At least cover some costs so more of us can participate? (Huge shout-out to the team at HealtheVoices here). As for the rest, a woman can dream.

My point is, I wish I was doing more in this space but my efforts have been temporarily curtailed by a peanut named Noelle and her big brother. They demand (and deserve) the majority of my attention for a bit. So it makes me even more verklempt at these nominations because this year has been such a different kind of challenge. Turns out, parenting is exhausting even if you're not also being treated for cancer.

If you have a moment, please consider endorsing me for one or both nominations. I appreciate it -- and you all -- so much.

How to Talk to Congress

I am way out of practice when it comes to trekking in heels all over the unforgiving, marble halls of Congress. When I went to DC last week, I thought I was being sensible with 2-inch pumps instead of the stilettos I wore in my twenties. I was wrong. My feet are still healing from the ensuing blisters.

Was it worth it? To the extent it meant getting in front of legislative staff for my Senators and telling them my story -- absolutely. I'm not sure if I changed any minds, but here's what I can report and some advice for talking to your own Senators, whether you can make it to DC or not. 

Here I am after meeting with Helen Heiden, legislative assistant for Sen. Jeff Flake (R-AZ). 

I'd like to think this meeting had something to do with the decision to delay the vote on Senate healthcare legislation until after the 4th. Either way, doing my part to #ProtectOurCare by telling my story to staff of @jeffflake

A post shared by Jen Campisano (@jencampisano) on Jun 27, 2017 at 11:00am PDT

I realize I look slightly annoyed. Some of that may have been my sore feet, but it's also the fact that Senator Flake has not said one way or another how he'll vote on the proposed replacement bill for the Affordable Care Act. This legislation, called the Better Care Reconciliation Act (BCRA for short), will gut Medicaid spending by nearly $800 BILLION, allow states to opt out of the requirement that insurance companies include essential health benefits (EHBs) in their plans, and give massive tax cuts to the wealthiest people in this country. It is hardly a healthcare bill.

For Arizona alone, the proposed legislation would cost more than $7 billion over the next ten years. More than 400,000 Arizonans would lose coverage. We are a state that expanded Medicaid services under the Affordable Care Act, and it has been a success story. As Sen. McCain's staffer put it to me, "We don't want Medicaid to change in Arizona! Enrollment is up, and costs are down. It's exactly what we want to see." Even our governor, Republican Doug Ducey, has spoken out against the current draft of the Senate legislation.

Over this July 4th recess period, new proposals to amend the BCRA have emerged, including an amendment by Texas Senator Ted Cruz that would strip the few remaining protections for those of us with pre-existing conditions. This proposal makes the legislation even worse for the estimated 16 million cancer survivors in this country, not to mention all of the people with other conditions -- such as diabetes, asthma, high blood pressure, anxiety, and the like -- who would no longer be eligible for affordable care. The Cruz Amendment sounds dreadful, but has been hailed by a few more conservative senators as a requirement for moving this legislation forward.

So what can you do to help stop this? How can you talk to your Senators about this legislation?

• Call. I have my own senators' DC and local numbers programmed into my phone, and make a point to call and talk to a staffer every day. You can also call 844-257-6227 to be connected to the senators in your state.
• Write letters. 
• In any case: identify yourself as a constituent. Be polite, be brief, but make sure to share your personal story about why gutting Medicaid, or defunding Planned Parenthood, or stripping protections for pre-existing conditions or essential health benefits is bad for you and your family.
• If you can't think of how this affects you personally, feel free to share my story. Or my friend Danya's, who also lives here in Phoenix. 

After my meeting with McCain's staffer last week, I pressed the button for the elevator, and out walked Senator McCain himself. I introduced myself, and said I was in town from Phoenix to talk to his staff about my experience as a cancer survivor. "I'm one, too," he responded as he shook my hand. "I know, sir," I said, then explained to him that I hoped he'd continue doing what's best for Arizona and voting against legislation that's not good for cancer survivors or our state.

And if your senators are opposed to this legislation? Please still call them and share your stories. They need to hear appreciation for their stances, and need to know why this matters so very much.

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.

Here's to More Birthdays

Birthdays post-cancer are a funny thing. I mean, of course they're great and we want more of them, but being diagnosed with cancer doesn't mean you don't notice the lack of collagen as the years pass. Or get irritated by grey hairs you-know-where when another part of you remembers you should just be happy to have hair.

Cancer doesn't give you a free pass when it comes to being weirded out about all the things that happen as you get older. For example, I have what I thought was the makings of a pimple on my chin, but now I'm pretty sure is just an ingrown hair. On my chin. Why? WHY ARE HAIRS GROWING THERE BUT NOT ON MY EYEBROWS!!!

So, I'm ecstatic to have more birthdays but also not going to pretend I don't notice the fine lines around my eyes or the fact that I can't eat peanut butter straight out of the jar (sometimes with a spoon) without then having to get raised eyebrows from the nurse at my oncologist's office as he weighs me in and sees I've gained four pounds. Sigh. But also? I don't really care. Because you only live once, and sometimes peanut butter is worth it.

I'm talking about getting older because my 37th birthday was last weekend. Somehow, that makes FIVE birthdays since I was diagnosed with metastatic breast cancer. SO, YES, I HAD A CUPCAKE. And a bourbon drink. What can I say? I celebrated.

I celebrated with friends and my husband who arranged a small gathering at a local...speakeasy? Hipster dive bar? There was skee ball and air hockey (at least I think. Us parents sat and visited the whole time. We were just happy to have a night of uninterrupted conversations. Even though, sure, ninety percent of those conversations were about our kids.)

We were clearly the early crowd, arriving at seven and ordering menu items like charcuterie and arugula flatbreads. Then around 9:30 things shifted, and we were easily the oldest, quietest, least collagen-ed people in the place. I vaguely remember a time when Chris and I used to leave to go out for the night around 10 p.m. (Here's photographic evidence.)

{circa 2006, celebrating Chris's 30th birthday}

But last weekend, we were home by 11, in bed shortly after, and I was still tired for two days because of it. And here's where I don't know whether to blame cancer treatments or aging or possibly even just being a parent to a little boy who wakes up ready to run and wrestle and do all of the things at seven a.m. But life is short, so why not do all of the things?

Here's to more birthdays and more doing and more celebrating (but maybe less peanut butter).

Officially Unemployed...And That's Okay

I knew it was coming, but it was still a blow to my ego to get the notice from my (former) employer in the mail. As of last month, NYSE Governance Services could no longer hold my compliance counsel position, since I've been out on long-term disability for two years now.

My resumé is officially blank. This is probably the end of my career as a lawyer.

I knew I probably couldn't go back. Almost one-third of the time I don't have enough energy to leave the couch. I have entire conversations with Chris and I cannot recall one iota, not one smidge, of the words we exchanged. The only reason I got 5,216 steps logged yesterday is because I'd forget why I entered a room, and end up making something like thirty-five trips back-and-forth across our house in an effort to find something that was in my car parked in the garage all along.

I'd have no business being a lawyer right now. Not a good one, anyway. 

I used to write white papers on how the Citizens United decision might affect a corporation's political donation plan, or help executives determine whether they were effectively training their employees on ethics and compliance issues. (You can wake up and stop drooling on your desk, now.)

Most of the time, my brain does not function on that level any more.  I am out of practice, and it's okay.

It is okay.

It took me awhile to admit that I am finally okay with this new reality, this not having a career that I worked really, really hard to achieve. That I'm okay being a full-time mom and full-time patient and part-time advocate. (I'd be okay without the patient part, honestly.)

It is finally getting easier not to compare myself to my friends whose careers are gaining steam (because that's what typically happens in your mid-30s). I have brilliant, hardworking, ambitious friends in my close circle who're vice presidents of major companies, engineers, surgeons at some of the country's best hospitals, nurses who help bring babies into the world, scientists who help patients get access to medicines they can't afford, professors, and -- yes, stay-at-home-moms who've left their careers as lawyers, too.

I can be proud of them and admire them without thinking less of myself, and more importantly -- finally -- without feeling sorry for myself about one more thing cancer took from me. This is my life, and it is more than okay.

(Don't get me wrong, I still have moments when I feel emotional about the lack of accomplishments I make on a day-to-day basis, like the fact that there are laundry piles everywhere, or piles of old magazines I mean to sort through, or piles of disability paperwork that needs to be filed... Basically, my piles sometimes make me cry.

I am working on some overdue spring cleaning, metaphorically and realistically.)

***

When Quinn asked me the other day why he had to go to school, I hesitated. I wasn't sure what to say.   On average, he goes to school about three days a week. His preschool is community-oriented and play-based, so it's basically days spent painting and making play-dough and reading and building cities out of blocks. Most of the parents know each other, and many of us spend time together outside of school.

So I said, "Sometimes, it's so I can go to the doctor. Sometimes, I get some work done." I didn't tell him that sometimes I lie on the couch and surf the internet for cancer cures for a couple of hours at a time. "But if you don't want to go as much," I continued, "you don't have to yet. I'd love to spend more time with you."

And he responded, "No, I want to go. I want to be with my friends." And then my heart shattered, but also swelled a bit, because my little guy is growing up and his friends are important to him, too.

Plus, I love it that he loves school as much as I did when I was a kid.

This is Us

I had this entire post written out -- a post in which I admitted I wasn't even sure this was a topic I should broach, no less -- but when my computer died after a day of traveling this week, the post was lost. So I'm starting over, which I guess answers my question to myself about whether I want to talk about racism on a cancer blog.

After all, racism is its own kind of cancer, isn't it?

I thought: This isn't why your readers come here. This is a blog about breast cancer, and sometimes parenting. Does anyone want to hear your opinion on our country's gun laws or its state of race relations? You have such a small voice, anyway. Who would even listen?

Those were the sounds of my self-doubt, that voice in my head telling me to stay away from this one, but I’ve stayed silent for too long and it’s making my skin crawl. Also, if I can reach 10,000 readers a month? 20,000 on a good month? That's something, I think. And it's a conversation worth starting. We are so overdue for honest dialogue about race in this country. Also, I don't know what else to do, so for now, my action is in my words.

As one blogger put it:

If you have a platform, small or large — a website, a Facebook account, a Twitter account, an Instagram account, an email list, a group of friends at church or on the playground, a family — do you use your platform to help improve things? To discuss our world? To learn? To teach? If not, why not?

But before I get to my words, let's start with Jon Stewart's words. If you haven't seen this, it's worth a watch.

The Daily Show
Daily Show Full Episodes,  More Daily Show Videos,  Comedy Central Full Episodes

***
I thought things would have changed after Newtown.

They did not.

I can't quite believe that in 2015, it’s still easier to buy a gun than a car. It means that these terrorists on our own soil make me eye everyone suspiciously when our family goes to the movies, wonder if some rogue nut with a vengeance is going to open fire at a TSA agent every time Chris travels, or worry a little bit every morning I drop Quinn off at school. Our houses of worship aren't even safe.

Guns are one issue and I wish we'd do more as a country to regulate them, but I am not hopeful that things on that front will change anytime soon. So someday I will have to talk to Quinn about gun safety and make sure his friends' parents don't have weapons that could kill him before I drop him off for a play date.

I will also have to talk to Quinn about racism, and hatred, and fear, but not yet. I still want to preserve some of his innocence. I still don’t know exactly what to say. See? There are parallels to cancer.

Here’s the gist of what I want him to understand: he was (and we, his parents, were) born into a certain privilege, even if we have faced some hardships as a family. This is a conversation that will be part of his upbringing as soon as I can find the words. (This analogy to Frozen might help.)

On privilege: did you know I am more likely to survive breast cancer because I'm white?

Fifty years after the civil rights movement, our country is still flying the confederate flag over our state capitols. Ours, because as Brené Brown says, “This is not bigger than us. This is us.” This isn’t something we can continue to ignore because we don’t live in Florida, or Charleston, or Ferguson. We can’t continue to blindly believe this scourge isn’t happening in our backyards.

News flash: it is happening.

This is us.

I don't imagine these conversations with Quinn will be simple, or easy.

But certainly our talks will be easier than if we were black. Because then I'd have to warn him about continuing to wear his beloved hoodies, which are decidedly cute on four-year-olds, but might bring grave danger in his teenage years. I would have to talk to my son about how people might not trust his word, value his worth, or see his beauty, how some might even call for genocide simply BECAUSE OF THE COLOR OF HIS SKIN.

Or maybe I wouldn't. Because what mother wants to tell her child any of these things? No mother I know.

On my flight home from Maryland yesterday, I sat on the plane next to an African-American woman and we got to talking about motherhood, and in-laws, and our kids, and cancer, and alopecia. Her youngest is a boy, and he's sixteen. Her oldest is a pastry chef. After a bit, because I was working on this post, I asked her whether and how she'd talked to her son about Charleston. Her eyes got a faraway look and she said, "Not yet. He watches the news a lot, and I'll wait for him to bring it up. 'Til he asks. He internalizes things, needs some time."

{image source}

Then she changed the subject to the escaped prisoners in New York, how she hopes they don't hurt anyone. We agreed there are some terrible people out there. But also (and mostly) really good ones.

***

What I hope I can do for Quinn until I find the words to talk about guns and cancer and race, what I hope I am doing, is guide his character to be strong, teach him to respond to adversity with grace and resilience and forgiveness. I'm not trying to jump straight to the Kumbaya part or be too Pollyanna-ish, but I believe we have to look for the good. That's one thing almost four years of living with a metastatic breast cancer diagnosis has taught me.

Look for the good. Find reasons to hope.

This is what we can learn from the mourning families in this tragedy, including a daughter who said at her mom's killer's bond hearing:

“I will never talk to her ever again. I will never hold her ever again,” said one sobbing woman who identified herself as the daughter of Ethel Lance. “You hurt me. You hurt a lot of people. But God forgive you. I forgive you.”

This is us, too.

How Could You Forgive Your Body for That?

I'm not always the nicest person. Ask Chris. Ask my mom. Isn't that always the case with the ones who know us best? They see the worst of us, and -- how lucky are we -- they love us anyway.

When Quinn and my mom, who's living with us while she gets her things unpacked and gets settled in her new apartment, are both talking to me at the same time, for example, as if the other isn't in the room, instead of handling it the way my more mellow-mannered younger brother probably would with a, "Hey, hey, one at a time guys!" and a smile, I'm quick to snap: "WHAT! What do you even want!" at whichever one of them is closer, usually my mom.

Mother's Day 2012 - with my mom & an unhappy Quinn (sadly, the only photo I could find of all 3 of us together)

With Quinn, I retract a bit, explain how we use our polite words when we want to interrupt when another person is talking. (Luckily, he's not old enough to throw it back at me that maybe I should try my polite words, too?) With my mom, I ask if I can please have some of the wine she's pouring. Maybe it'll help?

To be fair to myself, Chris also left town for a month last week, so I've been a little on edge while I shift the burden and get used to running the household on my own instead of sharing the duties like we usually do. Remembering trash night, cooking dinner and doing the dishes, doing a dry run of our taxes so we have an idea of what's left to spend on landscaping this year, and planning Quinn's birthday party is taking its toll, people.

***

I had a call last week with a woman who's writing a piece on me, who -- bless her -- sat down and read through my entire blog, all three-and-a-half years of it, over the previous week. She asked me a couple of straight-shooting, hard-hitting questions, including how I managed to love myself through cancer, which is, after all, a disease of one's own mutated cells. How did you forgive your body for that? she wanted to know.

I'd never even thought of it like that, I don't think. My body might have made a mistake, but I always blamed cancer, as if it were an entirely separate entity. As if it were not me. I knew I needed to be kind to myself to start healing, but I never thought of it as forgiveness. What was there to forgive? I've always been strong, capable, resilient. Even when I had moments of self-pity, even when I asked my therapist why me? I still knew cancer was not my fault. After all, why anyone?

What I have a harder time with is being gentle with myself (and clearly those around me) when I'm feeling pulled in too many directions.

I have a hard time finding patience. I am irritable because my routine has been knocked askew. Because I still have chemo next week and a scan on Quinn's birthday -- on his birthday, for chrissakes! -- next month. I'm angry because a friend was told she had no evidence of disease and two weeks later they found metastases in her brain. I take it out on my poor mom, who's just moved back to town because of a break-up.

And then sometimes I see her in all her fragility, starting over again in her mid-sixties, transferring jobs and setting up another new apartment after a lifetime of being a military wife and starting over every two to three years, trying to stick to a strict budget but still wanting to treat me to breakfast because that's what moms do, and saying things like, "I can't imagine not working. What would I do with my time?" I wonder if she means these statements as a premeditated response to anyone who might judge her (although I don't think anyone is) since she probably needs to work. I'm sure she doesn't intend to criticize me not working, but I still question whether it's a jab at my decision to stay home.

There's another of my faults, if you're counting: I analyze things to shreds.

So this is how it goes with my mom and I until we find our groove around each other again. There is some friction, so we have more wine than either of us is used to, we let Quinn be a buffer between us because it's hard to be tense when you're racing monster trucks, and I make a joke about my younger brother being our mom's favorite to diffuse any tension and also because he might be. He's all of our favorite.

These are the things I need to forgive myself for, the things I need to work on, the things I have any control over, even when it feels like I don't. How I act, how I react, how I interact with the ones I love the most. I could do better, and I'm always striving for that. In the interim, I love myself anyway. Because we should, and because -- if we're lucky -- our parents do.

But cancer? That wasn't me, wasn't my choice, wasn't my fault. What about you? Did you blame yourself for your cancer? How have you employed forgiveness in your own life? Has it helped you heal?

Another Doctor's Visit and a PSA

Sadly, being diagnosed with one type of cancer does not make you immune to other cancers. Radiation treatment can lead to an increased chance of thyroid and skin cancers. Certain genetic mutations mean that some women are prone to getting both breast and ovarian cancers (see: Angelina Jolie). Because my dad was diagnosed with melanoma in 2012, I am at an increased risk of skin cancer, too.

It didn't help that I lived in Hawaii from 1982-85 (although it is still my happy place, sunshine be damned), sandwiched by stints in southeastern Alabama (more sunshine). Later, in high school, I lived in Florida and spent almost every weekend at the beach or the pool. And then a bunch of us in college used to get set for spring break with weekly visits to a cheap tanning bed up the street from our university. For a base tan, we told ourselves.

Then we sat on a catamaran in Jamaica and got fried anyway because base tans don't protect against burns, it turns out. I mean, look at this godawful "tan" line of mine, circa 1998 in Jamaica. (I should have at least kept wearing the same swimsuit every day. Oh, the advice I would like to share with my younger self...)

Here's the thing: I don't remember ever wearing sunscreen until my twenties, although I must have. Right...? Mom?

These days, I'm religious about it, especially living in Arizona. And I am always hopeful that the damage hasn't already been done. Because wouldn't that be the pits? To survive stage four breast cancer only to be taken down by a wayward mole?

So when a spot on my nose started looking weird a couple of weeks ago, I made an appointment with a dermatologist. This spot was pink and looking pinker, and I strongly suspected basal cell carcinoma. Because that's where my mind goes after what I've been through. And even though basal cell carcinoma is a highly treatable form of skin cancer, it's still cancer. On my face.

Except it wasn't. It isn't. The spot on my nose is a sun spot (so damage, yes) combined with a broken capillary underneath that is making it appear pink. Nothing a little concealer can't hide, or -- if I'm feeling really vain -- have fixed by laser treatment down the road. I had a full body scan, too, and everything looks okay.

I was a nervous wreck undressing for that doctor, though. Because I couldn't help thinking about how horrible it was to hear, "You've got cancer," the first time. I was scared out of my wits about living through those three words again.

So here's my little public service announcement: wear sunscreen. Every day. Put it on your kids, too. Don't go to tanning beds, ever. Maybe cover up a bit if you're going to be on a catamaran in Jamaica and drinking too much rum punch. And -- as always -- even if you seem crazy to everyone around you, if something seems weird on your body, please please please get it checked out. Please.

You can now go back to your regularly-scheduled programming.

Enough Brave to Go Around

I suspect by now you've heard of Brittany Maynard. The 29-year-old newlywed recently made the very public decision to end her life before incurable brain cancer could make that decision for her. If you hadn't followed her story, you can read more about it here.

I've been debating writing about her life, her choice, her death here because I wasn't sure whether I agreed with what she did -- even if I 100% support her RIGHT to choose. After all, who am I to judge? Who are any of us, if we haven't been in the same situation? As my dad liked to tell me when I was young (and very often I had no inkling what on earth he meant): judge not lest ye be judged.

And yet, I couldn't help thinking of all of us who are fighting so hard to stay alive, or participating in clinical trials to further advance research for the next incurable patient who comes along. People lauded Maynard's choice as "brave," which left me wondering what that made the rest of us, those of us who dig our heals in until the bitter, ugly end. Those of us suffering through treatment after treatment in the hopes that one might work. Were we not brave?

Then I realized -- had an epiphany of sorts -- one has absolutely no bearing on the other. 

We can all be brave (or not; a diagnosis of cancer does not automatically turn one into a superhero, and some days, brave has nothing to do with the decision to get up and keep fighting. No--some days, that decision is pure stubbornness, or a deep-rooted responsibility to those who most depend on you to get your ass out of bed, or a little seed of hope that today might be the day they announce a cure). However you look at it, there is enough brave to go around. There is no brave shortage for which we need to conserve.

Putting on our bravest faces

Brittany's bravery was in her voice. Her bravery was in speaking up for the right to choose how you leave this world when you are told you will be checking out very soon. Tick-tock, tick-tock, tick-tock.

I was also diagnosed with incurable cancer, but I have not exhausted my treatment options. I do not have tumors in my brain threatening to take away my ability to make independent decisions. I am not having seizures that leave me unable to express myself. 

I repeat: I am one of the lucky ones. 

***

On Tuesday this week, a dear friend was admitted to hospice care, somewhat unexpectedly, as her cancer has taken a rather rapid turn for the worse. Radiation to treat her inoperable brain tumors (from metastatic breast cancer, not brain cancer) isn't having the desired affect. Someday soon, she will leave her two little girls, aged two and four.  

I cried until I couldn't cry anymore that night, and it had nothing to do with the elections.

This friend of mine told me she's at peace with whatever lies ahead for her. I can't quite wrap my brain around that idea -- of peace in the face of death. For me, it's an idea that no longer fits, like a sweater I accidentally put in the dryer. While I don't understand my friend's acceptance of her fate, I can find a form of bravery there, too. She has come to the end and -- still, she is bravely forging ahead to whatever might be next. My friend is a Christian, and I'm certain she would not choose the path Brittany Maynard did, even if it were an option in Arizona. 

Instead, hospice (from what I understand) provides comfort in the form of spiritual counseling to the extent one needs/requests it, social services for the family being left behind, and palliative care to keep the patient as comfortable as possible for however long it takes. In hospice, treatment for the disease itself is over. This process of dying can take weeks, or it can take days. With Medicare, hospice is available to any patient whose physician certifies that they have six months or less to live.

My friend will spend this time -- however much of it she's got -- with her little ones and her husband standing by. She'll be in and out of consciousness, in and out of pain, in and out of breath, until there is no more and she is just out. 

***

I have a scan on Monday. I expect good results (hope for them with every breath I take if I'm being honest), but I still filled my prescription for Xanax. I'm still jumpy with every weird pain -- the pinching where I probably pulled something under my arm in yoga, the place where my sternum cracks like knuckles when I stretch a certain way, and the headaches that are most certainly from stress and grinding my teeth at night but a little seed in my brain wonders what if anyway.

And all of this has me thinking: I don't know what choice I would make, if my options had run out and my possibilities were between a slow expiration and a quick end to suffering -- mine and my family's.

As my friend Nancy Stordahl wrote this week: "I remember when my mother was extremely ill, lying in a bed at a care facility and unable to do much of anything at all anymore. She was dying from metastatic breast cancer and it was a slow, painful and agonizing experience for her and for my family to witness. I remember there were moments when I wished the end would just come for her because she was suffering so much. I also remember immediately feeling guilty for thinking such things. I bargained with God for more time. I wanted more time; just one more day or one more night. I wanted it both ways."

I am a LONG way from that fork in the road. If and when it gets to that point, though, I really hope nobody will judge me if I move to Oregon, where I could at least get rid of my Xanax prescription.

Around the Web

{Hey, I never said this was a fashion blog}

I've been thinking of doing this for awhile, providing links here to news that gets me excited about the latest in cancer research or blog entries that move me or basically anything that catches my attention and I think you might enjoy, too. I had my scan today, so this post is also serving to take my mind off of that a little. I hope you find it informative and interesting, too.

Here are a few of the most fascinating cancer-related things I've seen around the web the last couple of weeks.

Researchers at Purdue University may have found a way to speed up cancer death.

Researchers are awesome.

"Hall said understanding Cdc14's role in DNA repair and how the enzyme binds to its substrates could be used to develop more effective chemotherapeutic weapons against cancer. Many chemotherapeutic drugs work by producing such extensive DNA damage in cancer cells that they kill themselves. Designing a chemical that mimics the features of a Cdc14 substrate would help block Cdc14 from repairing damaged DNA in cancer cells, speeding their death."

Chemo wreaks havoc on more than just cancer, sadly.

"The findings suggest that even though women want to get back to work as soon as they can, chemo may be changing their lives more than they think."

A former DWTS co-host was diagnosed with breast cancer.

In the article I read in People Magazine (don't judge), Samantha Harris said she opted for the double mastectomy (versus a lumpectomy) even though she wouldn't be able to hold her children afterward, to which I say: dear woman, I wish you the best, and you will be able to hold your kids again, sooner than you might think.

Cool things continue to happen in Seattle, naturally.

"In a new study published in Cell Reports, scientists at the Fred Hutchinson Cancer Research Center demonstrate that mice lacking one copy of a gene called CTCF have abnormal DNA methylation and are markedly predisposed to cancer. CTCF is a very well-studied DNA binding protein that exerts a major influence on the architecture of the human genome, but had not been previously linked to cancer."

And Johns Hopkins is pretty full of awesome, too.

“In our experiments, our nanoparticles successfully delivered a test gene to brain cancer cells in mice, where it was then turned on,” says Jordan Green, Ph.D., an assistant professor of biomedical engineering and neurosurgery at the Johns Hopkins University School of Medicine. “We now have evidence that these tiny Trojan horses will also be able to carry genes that selectively induce death in cancer cells, while leaving healthy cells healthy."


Have some exciting news you think I should link here? Please email me (jen dot campisano at gmail) or leave a note in the comments.