Saturday, December 31, 2016

So Long, 2016

A lot of people in my circles can't wait to see the end of 2016. And it's not just my circles, is it? By so many accounts, 2016 was a dumpster fire of a year:

So ingrained had 2016-cum-terrible-horrible-no-good-very-bad-year become in our broader consciousness that it came to stand in for something larger than itself: 2016-ness. On Election Day, British writer Owen Jones captioned a GIF of a mushroom cloud: “Just how 2016 is 2016 prepared to be?” He added later, when the early results were favoring Trump: “2016 currently thinks there is ample 2016 to go. 2016 is currently saying ‘heyyyyy! Look how 2016 I can possibly be!’ ”

Other people are all over Twitter talking about celebrity deaths, which were exceptional in 2016, I'll give you that. George Michael, Carrie Fisher, Prince, David Bowie. Us children of the '80s grieved the stars of our childhoods. But every year, women I know and love are dying, too.

This year started out for me as so many Januaries have since my diagnosis, with the death of my friend and advocate extraordinaire, Holley. At the time, my nurse told me that deaths tend to spike in January, patients having held on through the holidays. Without giving it much reflection, I can immediately think of five other good friends of mine who died of metastatic breast cancer in 2016: Colleen, Amanda, Michelle, Lesley, Jody... And the mushroom-cloud GIF embodiment of 2016 doesn't seem that far-fetched.

Holley & me at the opening of A Story Half Told in NYC, in October, 2015, 3 months before she passed away

On the other hand, a hand I envision rising out of the ashes of the bomb that was this year, I can't close out 2016 without reflecting on what a miraculous one it was for our family. 2016 will always be the year I was told I don't have metastatic cancer. 2016 was the year I got to celebrate my 20-year high-school reunion and had my port removed after almost five years of chemo infusions. This year I got to see Quinn start kindergarten, learn to ride a bike without training wheels, and lose his first tooth. 

And this was the first holiday season of Quinn's life that I haven't constantly wondered if it would be my last. 


For the past several years, we've participated in a winter solstice ritual introduced to us by our friend Kaye. Some years, she hosts a gourmet, multi-course meal at her home, and over after-dinner drinks we write our wishes for the coming year on scraps of paper. We don't share our wishes with each other, though I suspect everyone in the room always knows what my wish for the coming year is. Some years, I was bald. (Hint: I never wished for hair.) Kaye would say some words about the significance of the solstice and the coming of the light, and we would all light our wishes on fire, unspoken, rising to the heavens to be doled out from there.

I've had some setbacks over the years since my diagnosis, but my wish always seemed to hold. I imagine it is the same wish of most people with a diagnosis of metastatic cancer. This year, we didn't get together with Kaye, but we had friends visiting from DC and shared our new tradition with them. We lit our wishes on fire on our back porch, laughing that some didn't seem to launch far from our patio table. Of course, I hope they still come true, whether they made it to the heavens or not.

The winter solstice was my in-law's wedding anniversary. My father-in-law died of metastatic pancreatic cancer in the fall of 2009, just shy of what would have been their 35th anniversary. Six years later, my mother-in-law died of complications from Parkinson's disease. Sometimes, when we light our wishes on the winter solstice, I wonder if my in-laws aren't still looking out for us, granting us another chance to wiggle a loose tooth or play Santa for our boy.


On December 23rd, I paused to remember that same date in 2011 when I was told for the first time that the chemo had worked and there was no evidence of disease. Earlier this month, I was officially re-staged. After a clean scan mid-month, my oncologist told me I'd probably been stage 2B. My sister-in-law commented that I was probably the only person ever to be happy about a stage 2 cancer diagnosis.

2016 was the year I got to wipe the slate clean and say I've probably been in remission since December 2011 -- 5 years now. While that number doesn't hold much meaning for me in terms of magical cancer milestones (I've seen far too many people recur after reaching five years "cancer-free"), I am in awe that I'm still here. I pinch myself nearly daily at the twist my life has taken this year, at the new chances I've been given. 

It was just the three of us -- Chris, Quinn, and me -- this Christmas, we spent it in our pajamas until dinner, playing with new toys and eating Santa's leftover cookies. It was a pretty perfect celebration of life and re-birth, even if we're not churchgoers.

Tonight, we'll ring in the new year and say good-bye to 2016 with some friends and champagne. I'll make a toast to what a crazy, mixed-up, sweet, miraculous, dumpster fire of a year it was. I'll hope for many more miracles in 2017. Cheers, my friends. I love you guys.

Photo by the exceptional Lara Agnew

Monday, November 21, 2016

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.

Supermoon over DC
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.

Monday, November 14, 2016

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., 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?

Monday, November 7, 2016

Get Out And Vote

I wasn't sure I was going to write about this election on my breast cancer blog. I mean, what does politics have to do with cancer or healthcare? Quite a bit, actually.
My dear friend Beth is currently in a fight for her life because her insurance company, a federally-run group, has denied the combination therapy that her DOCTOR recommends she have to treat her metastatic breast cancer. You see, the drugs are not FDA-approved for use in this way, even though trials have shown 93% efficacy in the treated population. Beth has taken her fight to social media, and as a community, we are stepping up in the hopes that +Blue Cross and Blue Shield Service Benefit Plan will hear our voices and #SaveBeth.

It's gross, really, that an insurance company can say no to life-saving drugs.

Here's how it's supposed to work: 1) Patient pays for insurance 2) Patient gets sick 3) Insurance pays for treatment. THAT'S WHY WE HAVE INSURANCE. It's why we PAY for it.

Insurance denials by federal insurers are a policy issue. FDA approvals are a policy issue. Cancer research and how much money gets funneled into research on metastases (not nearly enough, only about 7%) is a policy issue. Policy gets set, for the most part, in Washington, DC. And for cancer patients and survivors, those issues are vitally important.

It is literally about life and death.

I cried tears of relief last year when the Supreme Court ruled in favor of the Affordable Care Act's protections on coverage for those with a pre-existing condition. I didn't know then what I know now about my health: namely, that I was likely never metastatic. But I still will always have had cancer. It is part of my story now, and prior to this monumental ruling, insurance carriers could flat out refuse to cover me.

I have my insurance through Chris. It has been wonderful insurance, covering most of our costs over the past five-and-a-half years, which have included a c-section, a bilateral mastectomy, nearly EIGHTY infusions of chemo or targeted chemotherapy, several biopsies, five weeks of radiation, more scans than I can count, and reconstruction. I have no idea how much all of that has cost, but my guess is Chris and I couldn't afford it out-of-pocket. 

The thing is, our insurance is tied to his job. I think his job is secure, but surprises happen in life. [UNDERSTATEMENT OF FOREVER] If something happened to Chris, would I be eligible for insurance coverage? The Supreme Court says yes. But Republicans have vowed to overturn the law that protects this coverage. I'm not okay with that uncertainty.

Republicans have also promised to defund Planned Parenthood, which provides free cancer screenings for underserved populations. DEFUNDING THAT CARE IS NOT OKAY. Women of color are already at such a disadvantage when it comes to healthcare. Struggling populations don't need one more hurdle standing in the way of their survival.

A republican congress has also drastically cut spending on science over the last decade, and would likely continue to do so. Science is how we get research. It's how we move toward therapies that keep patients like my friend Beth alive long-term. So she can watch her young kids grow up. So she can continue to advocate for other patients living with this dreadful disease. So we can end cancer as we know it.

But this election isn't just about me. It isn't just about cancer. And it isn't just about democrats versus republicans and who promises what.

It's also about the most qualified candidate in my lifetime to run for office, going up against an unprepared clown who seems to think our constitution is a joke and derides nearly every group of people imaginable: women, disabled people, Hispanics, Muslims, Jews, blacks, even those in his own political party. I honestly don't understand the appeal.

This election is about the tone we will set for our country for at least the next four years, but possibly a generation or more. Our kids are paying attention. Quinn tells me I should be president, but short of that, he doesn't understand why a mean person, a bully, would even have a chance. Quinn is in kindergarten and understands that's not how we get ahead in this country. Those are not the morals we defend. We are better than that.

As one of my favorite bloggers put it:

I'm begging you:  please go vote, and please vote with best intention.  I suspect that I don't have to convince you that this man is a demagogue -- I can't imagine you'd be visiting Chookooloonks if you agreed with his stance.  However, if you're eligible to vote in the United States, I beg of you to do so.  Vote early, if you can; if you can't, then on Tuesday, November 8th, please find your way to the polls, despite the weather, despite the lines, despite how busy you might be.  And as you vote, please be mindful:  please don't throw away your vote, and please don't vote for this person simply because you're loyal to his party.   He's a dangerous, unkind, mean man, and he doesn't deserve your vote just because he conveniently chose a major political party to hang his platform on.

There are so many important issues facing our country. Healthcare, the future of our treatment of cancer, and the first amendment are just a few important ones to me. I'll probably lose a few readers because of this post, but it's important. I can't keep silent on it, not this year, not this election. 

Please remember to vote tomorrow. Our lives depend on it.

Monday, October 24, 2016

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:}

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.

Monday, October 3, 2016

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.

Monday, September 26, 2016

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.

Friday, August 19, 2016

Flashback Friday

Twenty years ago, in August of 1996, I was a 17-year-old girl about to start college. I had just flown across the country from Seattle to Baltimore, Maryland, by myself. My parents and I had said our tearful good-byes at the gate at SeaTac (back when you could still walk people to their gates at airports). I'd get picked up at BWI by upperclassmen on the welcoming committee. There were about four of us who rode nervously in the university-issued van to campus, our new home.

I moved into an un-air-conditioned, stifling dorm room at Johns Hopkins University, all of my worldly possessions in a large suitcase, plus a box or two I'd receive from home in the next couple of weeks. I had my rolls of quarters for laundry and phone calls home, my shower tote for carting my toiletries to and from the shared bathroom, and the weird extra-long twin sheets made specifically to fit those narrow dorm room beds. I just needed to go buy a box fan to deal with those last few weeks of swampy mid-Atlantic summer.

That first week is kind of a blur of freshman orientation activities like figuring out who has your same area code, if anyone, and things like finding the financial aid office for a check so I could buy books. And then I started a work-study job at the campus bookstore, so I got to see what classes everyone else was taking, too. The bookstore was mercifully air-conditioned, and in a basement, so I was happy to spend time there, even if I was only making $5.25 an hour.
At some formal my freshman year. LOOK HOW YOUNG!
Fifteen years ago, I was a college graduate living on Capitol Hill in Washington, DC, and working as a lobbyist. It was late summer 2001.

I was also training for my first marathon. My marathon training team would meet early on Saturday mornings to run along the historic C&O canal path past Georgetown, into the shaded woods in Maryland, through old tunnels, for miles and miles. It was muggy, but the conversation was good and the cause was worthy. I had joined the AIDS Marathon Training Program to raise money for DC's Whitman Walker Clinic, at the time the largest service provider for AIDS patients in the District. My marathon would be at the end of October in Dublin, Ireland.
Prior to security barricades and guards everywhere, ca. 2001
Then September 11th happened. I was at a client office in Northern Virginia that brisk, beautiful morning, listening to a presentation on systems security when everyone's phones and Blackberries started buzzing. How rude, I thought. But then the whispers made their way to the podium and the speaker stopped speaking. "A plane hit the World Trade Center," a colleague said to me, quietly. I had been in the World Trade Center the weekend before. We all gathered around a TV in the conference room to watch the news coverage, wondering what the hell had just happened in New York. It looked like footage out of a movie. This can't possibly be real, I remember thinking. And then the Pentagon was hit. 9:37 a.m. It suddenly became crystal clear we were under attack.

I was able to reach my boss, who said they were closing the city. She asked whether I had a place to stay. I called a college friend who lived in Gaithersburg, Maryland, outside the beltway. I could crash with her until the city opened again and I could get back to my apartment. We drank cheap wine and cried about the new world we were living in.

Two days later was my twenty-third birthday. I didn't much feel like celebrating.

But I did get on a mostly empty plane the next month and I ran that marathon in Ireland.
Ten years ago, I was just returning from studying abroad in South America. I had finished my first year of law school and had taken the opportunity to spend six weeks in Santiago, Chile (where I spent much of the time sick with what was probably a bronchial infection) and Buenos Aires (where, recovered from my mystery illness, I ate my weight in grass-fed beef and red wine).

Chris and I had been dating about a year by then. Our schedules were equally crazy. I'd taken leave from work to go to South America, but was back at my job and school that August. He was frantically trying to finish his dissertation and typing away in his office at the Smithsonian most nights until the last bus came by, sometime around 1:30 in the morning. We saw each other on the weekends, where we'd rehash our weeks over runs through the zoo or beers in Adams Morgan. Or both, if we were feeling ambitious.

I was exhausted, but who cares when you're twenty-seven and in love?

In 2008, I graduated law school, followed Chris to Arizona, took and passed the bar here, and planned our wedding. We got married that fall, so broke it felt like we were in college again, but we had each other. And at least one of us (not me) had a job.

A little more than five years ago, Quinn was born. I'd settled into a job with a great team, Chris and I had purchased our first home (a tiny thing built in the 1950s), and Arizona was even growing on me. Life was so good.

Then on August 19, 2011, I went in for an exam with a breast surgeon who asked me to go to radiology right away. I still remember what I was wearing, a cute belted smock, navy with white flowers. I later threw it away. The radiologist took one look at my ultrasound pictures and told me she was 99% sure this was cancer.

Time seems to stand still at moments like this. I'll never forget where I was for 9/11, or what it felt like those first few days away from home at college. I'll always remember the prickly tentacles of fear that crept up the back of my neck when I was told I had cancer that Friday afternoon five years ago.

I wouldn't learn until later how aggressive or extensive it was, but I knew my lump was large. I'd thought it was an infection from breast-feeding. I was shattered to learn how wrong I was.

Five years later, I'm still here. A woman in my workout class this morning said, "Oh, congratulations! Five years is when your risk for recurrence goes way, way down, isn't it?" She was so excited, I hated to burst her bubble. But I chose honesty.

"No, it's just when they stop tracking us," I said.

She looked crestfallen. "Oh," she said.

"But it still feels like a milestone," I added, throwing her a bone. But also because it's true. It does feel like a milestone some days, like a rock in my throat on others.

Quinn is finishing his second week of kindergarten today. Chris just started teaching a new semester at ASU. I don't often know how to celebrate this day, or whether it's appropriate for a cancerversary. I mean, it was a terrible day of our lives, but then, look how far we've come. A lot of times I give the day a moment of silence and move on, but I think five years deserves something. Ice cream and a movie is sounding spot-on.

Monday, August 8, 2016

Gobs and Gobs (Rhymes with Sobs) of Emotions

Hey, there. Remember me?

I realize I've been away from here for awhile. That I've taken my annual summer vacation, and then some. I've missed you guys, but my words have not been working. As one blogger put it, "when I can't write everything, I somehow can't write anything." And no, before you even wonder, Chris and I are not getting a divorce (like the blogger I quoted). But there has been some stuff going on that I haven't been ready to write about. I've had what you might call a needle-scratching-across-the-record moment, and I've had to regain my bearings and catch my breath. I'm still trying to find my voice again.

I considered writing a whole post about going to my 20-year high-school reunion in July, which if you'd asked me last summer I would've said optimistically I'd be here to attend, but truthfully, I wasn't so sure. Not in the I'm-not-sure-I-want-to-do-one-of-those-things kinds of ways, because I get reunions are not everyone's jam, but in the I-might-be-dead kind of way. And then here it was, and there I was doing the small (and not-so-small) talk. I reconnected with old friends and wondered why we'd lost touch. Later, after we'd left the party, I sobbed with my oldest girlfriend because it was monumental. Because we've been through so much these past five twenty-two years.

Five years.

This summer has felt like I'm on the edge of a precipice. It could be the aura of magic and mystery I've superstitiously (stupidly?) placed on my five-year cancerversary coming up later this month, like it's some sort of expiration date for cancer, even though I know CANCER DOESN'T FOLLOW THE RULES. I am lucky as a leprechaun that I get to be here to wrestle with my emotions about this date again this year. Do I pop champagne to mark the anniversary of one of the worst days of my life? Write a letter to my younger self about what I wish I'd known? I will probably take a yoga class and cry in child's pose.

When I was diagnosed, the statistics said I had a 20% chance to make it to five years.


I am grateful, above all else. But there is also a healthy (and really, that's questionable) mix of fear and guilt as well. Every day another friend writes of the pain she's in, or has to have a port placed on her BRAIN to deliver chemo directly to it, or has to have her liver biopsied to see whether her cancer has jumped the fucking shark. Or died. This weekend, I learned of another friend who lost her life to metastatic breast cancer. And a fellow participant in the Story Half Told project has entered hospice. This is my tribe, and I want them all to be as lucky as I've been. But that is just not the way it goes with cancer.

My therapist has suggested I give myself a break this month, that I take it easy while my brain's emotion centers do a lot of processing. Except writing is kind of how I process, so here I am.

Even bigger than 5 years of cancer is the fact that Quinn started kindergarten today.


How's that for a precipice? I can't even look at my sweet child without tears welling up in my eyes lately. How incredibly fortunate am I, that I was able to shop for new clothes and school supplies with him, that I could relish in those last few days of summer with my favorite person, that I held his hand at meet-the-teacher day and helped him locate his cubby? So fortunate. So emotional.

In fact, these emotions are too big to contain. They are spilling right down my cheeks as we speak.

As I tucked him into bed last night, I felt a strange knocking in my chest and throat, like my heart was actively trying to escape my chest through my neck. I audibly sobbed as I choked on it, and Quinn wordlessly handed me his current favorite stuffed animal to comfort me. Quinn lay across me, with his head on my belly. I held his foot in my hands, measured it against my palm and wondered how the last five years have passed in a blink.

A photo posted by Jen Campisano (@jencampisano) on
For so much of his life, I wasn't sure I would be here for this. I've spent so long preparing for the worst, and hoping down to the core of my being for a chance at the best. Driving last week, as Quinn played a game on my phone and giggled in the backseat, I listened to Damien Rice singing Leonard Cohen's iconic song. Suddenly I understood exactly what it meant for something to be a cold and broken Hallelujah.

I don't remember who said it, but there's a quote about how children will break your heart, just by the simple act of growing up. And it's glorious, but, oh, how it aches. Still, for now at least, I get to be here for the best of it. How lucky am I?

Monday, June 20, 2016

(Un)Comfortably Numb

I was an Army brat, and so we bounced around a lot when I was a kid. I went to three different high schools because of my dad's job. I don't think anyone can do that and not be a little bit of a brat. For two-and-a-half years, for what was the end of middle school and the first half of high school for me, we lived in Orlando.


I was 15 when we left, so I didn't know much about nightclubs (a little, but not much). It was a place of Disney (the scene of even more heartache last week), and of short drives to the beach, and -- if I'm being totally transparent -- the backdrop to one of the more difficult times in my life until cancer. I was a 14-year-old girl who found my place with the wrong crowd, skipping school regularly and threatening to leave my family for my much older Puerto Rican boyfriend. It is a place without many fond memories for me, somewhere I try not to think of too often.

And yet.

I don't keep in touch with anyone from that time, but I still checked the victim list from last Saturday night's atrocity to see whether I recognized any names. Most of the dead were my age or younger. I didn't know anyone of the 49 victims personally, but I still grieved for such a grotesque loss of life: for the 2-time cancer survivor mom who was dancing with her gay son and took bullets for him, for the 19-year-old from Arizona starting a new life in a new town, for all of them.

This isn't about me, or my memories, or my sliver of grief compared to what those victims' families and friends must be feeling, compared to what the LGBTQ community must feel. My friend Aaron wrote that he is having nightmares about being shot in a bar. He doesn't feel safe. He can't sleep.

This is not about me, and yet it's about all of us.

I had an easier time talking to Quinn about why we can't have another baby -- because "mommy got really sick when you were little" -- than I will have when it comes time to talk about why tragedies such as Sandy Hook or massacres like what happened in Orlando keep happening in our country. On Twitter, one mom said she had to tell her kids, they deserved to know why they were having lock-down drills at school. I dread the day I have to strip away Quinn's innocence even more than I already have.

This mass-killing wasn't just about our shitty gun laws. Or about a homegrown terrorist claiming allegiance to ISIS to mask his own cowardice. It was also a hate crime against a particularly vulnerable community that has seen more hatred than most. As my friend Beth put it:

My social media feeds are mostly one-sided, filled with calls to change our country's gun policy (a vote for some changes are happening on the Senate TODAY, but are unlikely to pass given the political climate in Washington right now), and filled with support for the LGBTQ communtiy. In a sense, I have self-selected to be sheltered from the hate and from whatever nonsense Donald Trump is spewing at any given hour.

But none of us are immune to attacks like the ones in Orlando, Sandy Hook, San Bernardino, Aurora, or Charleston. None of us are sheltered from that. We are no longer safe in our schools, our movie theaters, our houses of worship, our night clubs, or at our jobs. How's that for freedom?

I don't usually get political on here, but enough is enough. I can't on the one hand have this space where I have a voice that people actually read, and on the other not speak up when something seems so intrinsically wrong in our world. I had to talk to my son about cancer, hear that big scary word come out of his little boy's mouth, tell him over and over again why I have to have scans that prevent me from being around him for hours at a time, and crush his sense of security that his parents will always be okay.

I do not even one iota want to also talk to him about how evil some people in the world are, how some people hate others for the color of their skin or for who they love, but especially how as a country we watched as 20 six- and seven-year-olds were gunned down at school, and a Congresswoman and her constituents were shot in a parking lot in front of a grocery store, and then another 49 souls massacred while they were DANCING, and we DID NOTHING. Let's do something. November is coming.

Friday, June 3, 2016

What Does the Beast Mean to You?

From left to right is Sheryl, my friend from college JT, me wearing a reminder sash that someone is diagnosed with breast cancer every 3 minutes in this country, and Ginelle, just after finishing our first Avon Walk in Santa Barbara in 2012. 
I was on a training walk with my friend and team co-captain Ginelle a few weeks ago while visiting her in San Diego. It was Mother's Day, and our conversation ran the gamut from our kids' friendships  and education in public schools to taking care of our mental health to the upcoming election, god help us.

This is how these types of walks tend to go when you're on the trail with a woman who has seen you at your literal worst, who has filled your freezer with homemade chicken pot pies and made pureed organic baby food for your 8-month-old, whose friendship has grown out of an openness and willingness to talk about issues that sort of surprised me when was first getting to know her.

Several miles into our walk, she said to me, "You know, I've been thinking about what the beast means to me." At first, I didn't know what she was talking about. It took me a second to catch up. Then it dawned on me. We call our team "Team Booby & the Beast."

"You mean, beyond cancer?" I asked.

"Well, yeah," she said. "Since you're doing better, it's taken on a bigger meaning to me. It's not just about your cancer or anyone's cancer. I think of it almost as the struggles we face as women. The burdens we carry, particularly with the election we're facing. Don't get me started on that."

I did get her started on that. We talked about Trump and the setbacks his presidency could mean for women. We talked about her daughters and my son and what we want them to know about their bodies, their abilities, the people they share this world with, and how to teach them respect for all of it. We talked about women who work, and women who -- like us -- stay home with our kids but used to have careers outside of motherhood. We talked about how lucky we are for the healthcare we have. We talked about privilege. And the disadvantages that still exist for women.

Recently, in two separate posts on social media, I was brought to tears about the struggles women still face in our society, not to even mention other societies. One was about a book on evolutionary biology with contributions from some of the top experts in the field, which failed to include a SINGLE female voice, even though I know plenty of women scientists and I am not even one. Second was this video that just speaks for itself about where women are in the world today.


This weekend, I am in Chicago with Ginelle and seven other teammates -- men and women -- to walk in my fifth Avon Walk, 39.3 miles over two days to provide funding for both research and underserved communities affected by breast cancer. I am pinching myself that I get to do this, that I am still around 5 years after my diagnosis, that we have so many supporters we have raised more than $32,000 and are currently ranked third for team fundraising in all of Chicago. I'm a little proud.

As I was packing for our trip, Quinn turned to me and said, "I can't wait to see you walk in Chicago, Mom!" I was surprised by the tears that poured out of me. I walk for him, after all, and this is the first time he'll be around to cheer me on. I pulled him in for a big hug and wiped the wetness from my cheeks.

Cancer, specifically metastatic cancer, will always be my beast. It is the thing against which I rail -- in whatever small way I can make a difference -- until my friends stop dying.

And I love that my son gets to see this side of me. He is old enough now to understand a bit of what it means to give back, to do something greater than yourself, to start to understand how breast cancer changed our lives. Earlier in the day, he had asked me if everyone in the world knew about the Avon Walk.

Ha. Not yet. Not even everyone knows about metastatic cancer, but we are working on that.


A number of patient advocates and friends of mine are also in Chicago this weekend, gathering to share their stories and insights with researchers at ASCO, the American Society of Clinical Oncology's annual meeting. I wish I could do both. Instead, I will be checking my Twitter feed regularly for updates on precision medicine, immunotherapy, advances from the Broad Institute, and quips from the brilliant women I get to call my friends.

Here we go, Chicago.

Wednesday, May 18, 2016

A Series of Catastrophes & Miracles

I honestly wasn't sure about reviewing this memoir on my blog. I haven't even been writing about me on my blog lately because I can't find the words. I don't know if it's the vernal equinox, or the fact that we finally chose a kindergarten -- hallelujah -- after months of debates and tours and assessments and non-refundable deposits, or if it's because I'm also training for and fundraising my butt off for a 39.3-mile walk in a little over two weeks. 

Whatever the reason, I haven't found time (or words) to write lately.

But the publicist appealed to the mom in me. The synopsis she sent promised the story of a mom diagnosed with metastatic cancer who experiences nothing short of a medical miracle. More than anything, I wanted to read A Series of Catastrophes & Miracles because who doesn't love a good miracle? Isn't it what we all hope for? So I said yes and received my copy in the mail a few weeks ago. 

From the opening "Spoiler: I lived.", I was hooked. I freaking devoured this book. So if you're looking for a more balanced review, you may want to look elsewhere. I'll be over here re-reading my copy a few more times. You should go get your own.

As a stage 4 cancer patient, of course I could relate to so many of Ms. Williams' experiences -- MRIs and PET/CT scans, learning the language of cancer, facing your mortality far younger than you ever expected, even dealing with scars because your body has been carved up in an attempt to rid you of the disease that might kill you. "I do what I can to cover my scar, so the sun won't burn more cancer around the part of my scalp the doctors removed--and also because I don't want my freakishness to make people uncomfortable. And by people, I mostly mean my own children," Ms. Williams writes. She is witty and snarky and reminds me of some of my best friends.

So many times in the book, I wished I could sit down with her over coffee and scones -- or a glass of wine -- to say, "Me, too. I've been there." I've lost too many friends. I've marveled at my response to treatment when others whose disease seems the same on paper don't fare as well. "This is the cruel reality of successful cancer treatment. You want so much for everybody to get what you got, and for it to work like it did on you, but that's not how it happens. Instead, getting better often feels as random as getting sick was," she says.

I wanted to give Ms. Williams a high-five and a hug for lauding the scientists who hand her her miracle. She writes, "And just to be perfectly clear on this point in case somehow you missed it--I didn't get better because I prayed correctly or because I'm strong. I got better because the science worked on me." A-freaking-men. The author's calls for more research -- because sometimes it works! -- are woven throughout the narrative, and I hope above all this book spurs a loud public cry for science funding increases.

As a wife who's watched my husband lose both his parents, there were uncanny parallels in Ms. Williams' story and my own. Through the difficulties of loss, and how a marriage can contain enormous grief yet still find space for enduring love, I found myself wanting to underline and highlight entire chapters. "Yes, this. And also this," I kept thinking, often through tears.

And as a mom, I could also relate. In one passage, Ms. Williams writes, "When I walk in the door at last, the first thing I do is the first thing I always do when I get in late. I peek in on the girls and their dreaming forms. Sometimes, when I look at them, I see the babies they once were, all flushed and milk drunk in my arms, their chubby hands curled around my finger. I remember them pulling up to standing in the crib, then plopping down on unsteady legs with surprised giggles. Other times, I look at them and see two young women, a bride and her maid of honor at a wedding, or two grubby travelers throwing down backpacks in the hall after a month hiking Central America together. I want to be there, I think, as I watch them from the doorway, for all of it." 

I put the book down then, got out of bed to go check on Quinn, and listened to the sound of his rhythmic nighttime breathing. I know this mom. I know this love. I want to be there for all of it, too. Here's to more miracles.

A Series of Catastrophes & Miracles cover

About A Series of Catastrophes and Miracles

• Hardcover: 304 pages • Publisher: National Geographic; 1 edition (April 26, 2016) A wry, witty account of what it is like to face death—and be restored to life. After being diagnosed in her early 40s with metastatic melanoma—a "rapidly fatal" form of cancer—journalist and mother of two Mary Elizabeth Williams finds herself in a race against the clock. She takes a once-in-a-lifetime chance and joins a clinical trial for immunotherapy, a revolutionary drug regimen that trains the body to vanquish malignant cells. Astonishingly, her cancer disappears entirely in just a few weeks. But at the same time, her best friend embarks on a cancer journey of her own—with very different results. Williams's experiences as a patient and a medical test subject reveal with stark honesty what it takes to weather disease, the extraordinary new developments that are rewriting the rules of science—and the healing power of human connection.
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About Mary Elizabeth Williams

Mary Elizabeth Williams is a senior staff writer for award-winning whose columns are regularly among the top viewed, commented on, shared, and cited as the best of the week. The "Lab Rat" series on her clinical trial was nominated for the 2012 Online Journalism Award for Commentary, and her essay on receiving a melanoma diagnosis is in the Harper anthology The Moment, an Entertainment Weekly "Must List" pick—alongside essays by Elizabeth Gilbert, Jennifer Egan, and Dave Eggers. She is the author of Gimme Shelter: Ugly Houses, Cruddy Neighborhoods, Fast Talking Brokers, and Toxic Mortgages: My Three Years Searching for the American Dream. A starred Booklist selection,Gimme Shelter was called "poignant and funny" (Kirkus), "a must-read" (New York Daily News), "hilariously evocative" (Time Out Kids) and "compelling" (Publisher's Weekly). She lives in New York City with her husband and two daughters. Find out more about her at her website.