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

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.

Radioactive

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

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

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

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

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

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

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

***

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

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

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

"What's radioactive?" 

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

"Huh?" Quinn and I both said.

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

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

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

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

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

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

***

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

Getting Our Affairs in Order

Shame on us, really, because we should have done this years ago. Along with finishing Quinn's baby book and organizing our family photos. See, also: throwing away leftover Halloween candy, drinking more water, and stepping up my cardio game.

But with the death of both of Chris's parents in the last few years (his mom just this summer), not to mention my string of luck health-wise in 2011, 2012, and 2013, it became more and more clear we needed to have our affairs in order. It sounds so final, to "get your affairs in order," but really, it's just the smart thing to do. I'm not planning on dying anytime soon, but you never know. That proverbial bus seems to be all over the place these days.

Also, I'm a lawyer. I know it's important to have an estate plan, if only to keep the courts out of things at the end of your life. Lord knows I don't want some Arizona probate court deciding what becomes of this guy, god forbid and fingers crossed and knock on wood. 

So we met with an attorney, who will draft a plan for us and set things up so that Quinn will be okay even if Chris and I both get hit by a bus. 

I held myself together through the meeting, despite having to talk about what happens if Chris (or I) remarries, who makes decisions if one of us is on life-support, who would get custody of Quinn, and whether you can legally enforce requests for certain included elements at a memorial service, such as the singing of "Ave Maria." (I think this last one was Chris's attempt to lighten the mood. I was trying not to choke on the knot growing at the back of my throat.) 

I know in lots of ways these are first-world problems. We have a house, we are educated and have a college fund for our son, and we have family to care for him should something happen to both of us, which is admittedly unlikely. But something about incurable cancer and making very concrete plans for the end of your life and having scans in two weeks came together to have me ugly crying in my husband's arms this weekend, asking him who would remember snack days at school for Quinn, or register him for soccer and swimming (and make sure he gets to both), or put notes in his lunch telling him how much he is loved? And would he remember that I'd done any of these things for him? Would he remember me? 

Oh, yes, I went there. 

My death is not imminent, I don't think. I am getting to be Quinn's mom, which has made me the luckiest person on the planet these last four-and-a-half years. Mostly, things are pretty good here. Other than cancer, I can't complain! Which is along the lines of the question, "Otherwise, Mrs. Lincoln, how was the play?"

But, oh, can mortality be a terrifying thing. 

Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.

The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.

So this happened (extra blood work) because even though my CT was clear, my liver enzymes are mysteriously elevated. Dammit. #scantreatrepeat #stage4needsmore

A photo posted by Jen Campisano (@jencampisano) on Jul 22, 2015 at 4:33pm PDT

I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.

Around the Web: Like Clockwork

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

{photo credit}

It's like clockwork over here.

Except it isn't.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

At Long Last, Answering Some Questions about 'Exceptional Responders'

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else. 

Last Week it Was the Bones, This Week the Lungs?

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

Will the Breast Cancer Test Kit be Next to the Pregnancy Tests at the Drugstore?

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

A Case of Two Steps Forward, One Step Back (Or Sideways...)

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Finding Relief from Post-Mastectomy Pain

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

My goal {photo credit}

"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

I Might Have to Ask My Doctor About A Daily Aspirin Regimen

He can't order any tests based on a question about aspirin, can he? 

"A daily dose of aspirin may be effective at blocking breast tumour growth, Indian-origin researchers have claimed.

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

And How Law School May Have Led to My Cancer Diagnosis*

"“People really should elevate the importance of sleep to the same level they do diet and exercise to improve their overall health and well-being,” he said."

On that note, I'm going to bed. 

* Allegedly.

Four

My Dearest Bugsy-Boo,

Last Friday you turned four years old. FOUR. How the heck did that happen? One minute you were my baby boy learning to walk, then you were climbing up and out of your crib with aplomb, and now you are all mud-loving, solid, strong boy, knocking me over with the force of your hugs. Saturday night as I was tucking you into bed, you asked me if you'd be three in the morning. "No, honey, you won't ever be three again," I said. And then the lump in my throat nearly swallowed me whole. Good-bye, three.

 

Three has been a challenge, I won't lie. But even as I write this, I can hardly remember whatever it is that I've found so infuriating. Already, I only remember you telling me things like, "Mama, when I think of hearts, I think of you." Or, "I'll go with you to keep you safe, Mom," when it's dark in the hallway. Or, when it was circle time at school and the teachers asked all of you what your favorite part of the morning had been and every other kid said playing on the playground or snack time, they told me your answer was, "Playing with my mom." Your love is my best medicine, buddy. You are my super-hero through and through.


Just the other day, on the way to your birthday party, after we'd packed the car with your confetti cake and dinosaur goodie bags to give your friends, you said, "Mommy, you're the best mommy EVER!" and smiled at me so earnestly I thought this is it. There is no greater happiness than this right here.

Your sweetness overwhelms me.

Alternatively, you say things that just about bowl me over, like when I asked you not too long ago why you were having such a hard time listening that morning and you said, "I don't want to listen to you because I just get so annoyed." As soon as I picked my jaw up out of my lap, we talked about why it's still important to listen even if you don't always like what people are saying.

Three going on thirteen. I spent the rest of that day either laughing as I retold the story or impressed by your vocabulary. Of course I think you're brilliant, but I am most proud of how much you care for the people you love, how kind and hilarious you are, how big you hug, how you don't hesitate to call me out when I'm being annoying. Pardon me, sir.

Quinn, you have such a zest for life, and I marvel at your ability to take it all in at a whopping speed, going strong and steady at least twelve hours a day, every day, without pause until you begrudgingly collapse into bed after talking me into just one more book, pretty pleeeeease. You have an insatiable curiosity about everything around you. Right now, you want to be an astronaut. You love dinosaurs and fossils (like your dad). You still love to climb--trees now, and your bed as soon as we'll flip it to a bunk bed, and the drawer pulls in our kitchen as if they're a ladder.

At night, you tell me you still have "five more energies," as part of your read me a fourth book strategy. Can I borrow some of the energies? The truth is, I feel stronger and more alive just being a part of your world. Thank you for showing me how it's done.

I am still putting you to sleep every night. I wait for your breathing to get deeper, for you to roll over onto your left side, bunny and kitty and owl and dinosaur tucked in with you, and then I sneak out if I haven't also fallen asleep beside you in your twin bed, Clifford the Big Red Dog as my pillow. You've started calling me out on it, knowing I will go into your dad's and my room to do some work on my computer, that you'll probably come in to join us at some point around midnight, and so you've started asking me if we can just start in my room instead. No, I say, let's fall asleep here first.

A few weeks ago, on a chemo day for me and when dad was out of town, you woke up as I was getting ready for bed. It was early, not even 10 pm yet. You'd had a nightmare, and your crying sounded as if you were still half-stuck in it, like the screams you wanted to scream kept getting caught in your throat. And then words started to come together, as I scrambled down the hallway to comfort you. "Where are you, Mom?" you choked through a sob, sounding panicked. Some spiral in my mind went immediately to the thought I can't leave him. This little boy needs me. I pulled you in for an embrace and said, "I'm here, buddy," over and over again until your sobs became hiccups.

Later, you told me you dreamt bad guys were taking me from you. So I promised you with all the truth I can muster and all the hope in the world, "I'm not going anywhere." For now, our luck is holding, my scans are still clean, and I am eternally grateful for these days, months, years with you.

Here's to celebrating many, many more birthdays together, buddy. (But slow down just a little, okay? We only get to do this once.)

Don't forget I love you more than anything.

Love,
Your Mama

Like Watching the Grass Grow

As I mentioned back in June, I've been working on growing out my hair. And I haven't been updating you as promised because it would literally be like watching grass grow. Except, you know -- hair.

At this rate I'm going to be forty-two by the time I have enough to donate. But it's been six months so I thought it would be a good time to finally show you the progress I am making. (Here's where I started, if you're interested.) Also, I went a little darker for the fall, if you're keeping tabs on that sort of thing.

Another thing about this process: I schedule my hair appointments to coincide with my scan results. Am I the only one? Just in case I have to go back on broad spectrum chemo-chemo and lose my hair again, I don't want to do anything to it and be told I'll lose it a few weeks later. So I had my scan on November 10th and my hair color appointment two days later. My next scan will be in late February or early March, so expect another update then -- at which point maybe it'll finally be past these darn ears of mine.

(Also, our family photos are courtesy of Jenny at Jennifer Bowen photography, and I am absolutely thrilled with them.)

Plus, a gratuitous photo of Quinn, just because that expression. He will probably get everything on his Christmas list because of that face. What can I say? Santa is a softie.

The Busiest People Ever

"We are the busiest people EVER!" Quinn announced the other day.

We were driving home after preschool pick-up, and I'd asked him about his day. As usual, he told me he "played and played and played!" And then, in an adorable pattern I've noticed lately, he's starting to ask things like, "How are YOU, mom?" or "How was YOUR day?" Our conversations are becoming two-way streets, even if those roads often lead to tales about dragon-sauruses who've turned into trolls.

I told Quinn I'd had a "doctor's appointment" (my CT scan), lunch with my friend/book editor, and that we'd gotten good news that day. Just in case you're not on FB/Twitter/within a few blocks of my home where I spent Monday squealing like an excited pig over the news, my oncologist called with my scan results: it was clean. This marks one year of No Evidence of Disease.

We celebrated as a family Monday night, cheers-ing our glasses of wine to Quinn's milk. The twitching in my right eyelid that's been plaguing me since mid-day Sunday has almost stopped. For now, I'm taking a break from my nightly dose of Xanax.

But I've been circling back to Quinn's comment about how busy our lives are, and wondering if we're over-scheduled. I try to give us ample downtime (see: days in front of the TV post-chemo), but I also try to accommodate Quinn's requests to spend time with friends, introduce him to new activities, and maintain a semblance of routine. We still go to swimming once a week. We just planted our fall garden, since that's what you do when it's still 85 degrees outside in November.

On Tuesday morning, we went to our friends' house, where we walked to the nearby Veteran's Day parade. That afternoon, another friend dropped her son off for a few hours so she could make it to a meeting (school was closed). By bedtime, Quinn was fried, and it showed.

I laid down with him as he fell asleep, a habit we're still clinging to. He wrapped his arms around my arm, holding my hand to his chest as he nodded off. My heart tightened. We try to protect him against everything I'm going through, to keep our anxiety away from him, to not talk about potential outcomes around him, but it's impossible for some of it not to seep into our daily lives. And kids pick up on so much. This strong, brave boy, who is exhausted from the hectic flow of our lives, has already had to know too much, sense too much, experience too much.

So, with my good news and the holidays approaching (because when could be a better time for trying to slow things down, amiright?), I'm going to work on making our lives slightly less busy, slightly less anxiety-ridden, slightly less scheduled and see what happens. The flip side of that coin is I'm looking at adopting a dog, though, so maybe we will still be the busiest people ever, just with more slobbery kisses.

Around the Web

I had a CT scan this morning, so now I wait. The official line that the technician gave me (and all the patients he sees, I suspect) is that it'll take two to three days to hear from my doctor's office. If I'm lucky, my oncologist will call earlier than that (if I'm luckier still, with good results). I'm meeting with him Wednesday morning, so in any case, I'll know by then.

As my friend Joanna reminded me, as a wise man named Tom Petty said about waiting...

A Device for Watching Metastases IN REAL TIME

This both fascinates me and terrifies me at the same time (knowing it is what happened in my body). But kudos to the scientists who are making it possible to better understand this process--and, ultimately, how to stop it.

"This close-up view allowed the pair to see that the tissue attempted to surround and contain the cancer cells. Unfortunately, some of those cells escaped and began to burrow in to a vulnerable point along the vessel. After a while the force from the artificial bloodstream was great enough to pull the cell into the vessel completely and flush it along."

Whatever Your Thoughts on Mammography, There's No Denying Its Cost

"Medicare-funded breast cancer screenings jumped 44 percent from $666 million to $962 million from 2001 to 2009, yet those added costs did not improve early detection rates among the 65 and older Medicare population, according to a Yale School of Medicine study published recently in the Journal of the National Cancer Institute."

{photo credit}

Potential Postpartum Breast Cancer Therapy (This One Hits Close to Home)

"Nearly 25 percent of all breast cancers among premenopausal women occur within two to five years following a pregnancy. These postpartum tumors are more likely to spread or metastasize to other parts of the body, leading to an increased risk of death.

"Unfortunately, these are young women who have just had children. All breast cancer deaths are tragic but the loss of a young woman who is also a mother is so devastating for families and has a profoundly negative societal impact," said Rebecca Cook, Ph.D., assistant professor of Cancer Biology at Vanderbilt-Ingram Cancer Center, Nashville, Tennessee.

While more research is needed, Cook said the results suggest that using a MerTK inhibitor in conjunction with other therapies could be helpful.

In the meantime, Cook said women who have recently given birth need to be vigilant about breast health."

No Surprise Here: Cancer's Costs Run Deep

"What’s clear is that employment and money concerns haunt many people with all kinds of cancer, nation-wide, during and after treatment. A malignant diagnosis can lead individuals to experience disappointment at work, earn less, retire early and, as a consequence of medical bills, reduce their home and leisure spending."

Predicting When Cancers Will Spread to the Brain

"Up to 30 per cent of breast cancers will eventually spread to the brain, often many years after the first tumour was treated. Tackling secondary brain tumours with radiotherapy and surgery has limited success, with most women surviving just seven months after the brain metastasis has been diagnosed."

Surprise Discovery Makes Way for Possible New Treatment for Breast Cancers

"Researchers at Sydney’s Garvan Institute of Medical Research have found that calcium-binding drugs commonly used to treat people with osteoporosis, or with late-stage cancers that have metastasised, may also benefit patients with tumours outside the skeleton, including in the breast."

Around the Web

I had chemo today. A friend I hadn't seen in awhile came to sit with me and catch up. She knows my upcoming scans are on my mind, and asked me if and when I'd opt to quit taking this drug, assuming my scans keep coming back clean.

But here's the deal: I don't know of any other targeted treatments, if cancer were to rear its head again. I keep looking for the research, but it's not there yet. So, even with my (relatively mild) side effects, I will remain on this drug as long as it is working or until something better comes along. A gentle reminder that forgoing treatment altogether is NOT typically recommended for metastatic breast cancer patients, even those of us who are extremely fortunate.

Here is the research I did find on the web in the last week. Have you seen anything you think I should include here? Please send me an email!

The Problem Is, I'm Not Sure This News Is Going to Make Anyone Sleep BETTER.

"According to a new study, cancerous tumors may grow faster at night, during the hours typically taken up by sleep. Their discovery may point the way toward new, circadian-aligned strategies for treating cancer."

Why Has This Not Been Done Before?

"One of the tragic realities of cancer is that the drugs used to treat it are highly toxic and their effectiveness varies unpredictably from patient to patient. However, a new “tumor-in-a-dish” technology is poised to change this reality by rapidly assessing how effective specific anti-cancer cocktails will be on an individual’s cancer before chemotherapy begins.

“This is the first time the 3-D culturing method has been used to predict the effectiveness of different drugs on tumors from individual patients,” said graduate student Alex Walsh, who has played a key role in developing the test."

New Drug Combination May Work as a One-Two Punch On Breast Cancer

"We found if you put the two drugs together, you have much better ability to kill tumors than applying either drug alone," Keri said. "That's the major discovery. Prescribing both is much better than just selecting one or the other."

And Another Promising Treatment Option for Triple-Negative BC Patients

"However, the researchers found that the biggest improvement was in women with advanced TNBC. Overall, this group of women's survival improved by almost 5 months."

Scientists FTW: Getting Lung Cancer Cells to Self-Destruct

[photo credit]

"The discovery, although still in its infancy, could revolutionize the way doctors approach cancer. 'Igniting the fuse that causes lung cancer cells to self-destruct could pave the way to a completely new treatment approach – and leave healthy cells unharmed,' lead researcher, Dr. Henning Walczak, from University College London Cancer Institute, explained in the press release."

A Reminder that I'm a Quail (But Not Today)

In the middle of a painting session with Quinn yesterday afternoon (in which we painted heart-shaped pumpkins and talked about how to mix red and yellow to make orange), my oncologist's office called. As it happens every time I see their office name on my phone's screen, my heart leapt into my throat. Was something wrong with my blood work? I couldn't help wondering.

It was something much more benign than that (pun intended). They've scheduled my next CT scan -- how can it possibly be that time again already? -- and wanted to pass along the details, to remind me of the rules even though the routine is painstakingly familiar at this point. I know I can't eat or drink for hours beforehand. I know not to wear any jewelry to the appointment. I know where to check-in and exactly which months-old magazines will be available for me to browse while I wait. I remember.

I swirled my paintbrush in a cup of water and watched it turn a murky shade of orange. The phone call took just a few minutes, and I've learned how to bounce right back into mommy mode, how to not skip a beat in my activities with Quinn, how to put on a brave face, even when my head is already starting to swirl with what-ifs.

***

Quinn made a comment the other day about what it is each of us does: "Daddy goes to work, I go to school, and mommy goes to doctor's appointments! Right, mom?" Oh, buddy. I am so, so sorry.

***

I've had a headache for nearly a week. It's probably hormonal, or it could be that one week into October and I'm already exhausted by the onslaught of awareness (although the conversation is starting to change!) It could also easily be because I have a terrible habit of grinding my teeth while I sleep. I wake up and my jaw muscles are sore from the tension I can't escape in the middle of the night.

But I also know that somewhere around 50% of metastatic patients with Her-2+ breast cancer end up with brain metastases because chemo doesn't cross the blood-brain barrier and cancer cells do.

I read this blog post by an oncologist the other day. He talked about an evening when he was sitting out with friends and watched a falcon descend upon a covey of quail, which he turns in to a metaphor for living with advanced cancer. He also writes about how "chronic" is not really an accurate descriptor, although it has been the one my doctors have used most with me.

This line in the blog post hit home: "If you have metastatic breast cancer you are walking around under the cloud of a death sentence, any temporary stay of execution provided by fulvestrant or T-DM1 notwithstanding." T-DM1 is the drug I'm on.

And so already, my scan a month away, my head swirls with the what-ifs -- how long will this temporary stay be? When will the next big scientific breakthrough happen, and will it be soon enough? Am I strong enough to face chemo-chemo again, if this drug stops working? Why does my head hurt so much? But I have learned to reel myself in, to go back to the moment, to keep painting.

This last line from the oncologist's post also stuck with me: "And then, much more quietly than the quail and more slowly than he had arrived, the falcon took off, talons empty: not today. Not today. Not today!"

An Update

After chemo yesterday, I'm feeling pretty queasy today. I don't usually take Quinn to daycare on Tuesdays, but the option was available today so I took advantage of it. And even though our trip to Portland alleviated much of my anxiety going into this week, I still cried into Quinn's pillow in the dark as I laid down to tuck him in last night. Some of it was the slight stress I was feeling over my scan results -- UPDATE: as I was writing this, my doctor called to tell me MY SCANS WERE CLEAN!

There's no easy transition here, and mostly, my tears last night had to do with a friend, Brigid, who was admitted to the hospital yesterday for the third time in the last couple of weeks. It is really tough to celebrate my good news at the same time that my friend suffers. The tumors that have been plaguing her lungs for nearly eight years with nary a symptom are now growing so fast they are causing her lungs to repeatedly fill with fluid despite procedures to drain them; Brigid can no longer breathe very well unassisted. 

{Brigid and me, December 2013}

On paper, Brigid's cancer is very similar to my own: Stage 4, Her-2 and ER/PR+. But the drug that has held me in remission for nine months now had almost no effect on Brigid's cancer. Killing cancer is not yet a perfect science. 

When I first met her, I was in awe of how long Brigid had lived with this disease -- about five years at the time. As I approach the three-year anniversary of my diagnosis, though, I realize five years isn't close to enough time; neither is eight years. Is there ever enough? Are we ever ready to throw in the towel? Does it matter what we want?

Who knows why I respond to drugs that haven't stopped Brigid's disease from progressing? Who knows how long my luck will hold? For now, I am feeling an odd mix of relief and fear for my friend. My stomach is doing flip-flops, and this time I can't entirely blame chemo.

Better than Xanax

Somehow, three months have passed and it is time for another scan. And, miraculously, I have not been completely hijacked by anxiety this time around (only occasionally held in its grips over the past couple of weeks). I'm not saying I've been a free-spirited, deep-breathing, always-patient monk about it, but remember: this is me we're talking about. Was I ever going to be that person?

My secret to staying sane? Lots of wine.

I'm only slightly joking.

We spent the last week in Portland, Oregon -- Chris at a workshop on volcanic ash, Quinn and I exploring summer in the Pacific Northwest with one of my best friends from college, J.T., and her two girls. We took our three preschoolers to the zoo, the park, a fountain they could splash around in for hours, a farm to pick berries, another park, out for ice cream a couple of times, and to the Oregon coast to explore the beach. We stayed busy.

My friend took me to her -- how do I say it? intense? sweaty? insane? -- spin/dance class where I almost fell off the bike. Her husband had asked me the night before if I had much rhythm even though he's known me since we were 21 and has probably seen me on the dance floor. When I said, "Not really," he replied, "You're going to hate it." Hate is a strong word, but I probably bore a strong resemblance to Elaine in her infamous "Seinfeld" dance. Since I didn't pass out, though, I figured it was a good indication I'd do okay on the echocardiogram of my heart this week. I hope.

Between the blackberries and the misty coastline, I was homesick for that corner of the country where I spent a good part of my childhood. I was ready to find Chris a job studying the soil of the region's winemakers. That's a good job for a geologist, right?

It's not like Chris didn't love the inexpensive microbrews or the lack of pretension or the fact that the only things that will get you judged are putting your recycling in the wrong container or driving too aggressively.

***

This morning I woke up before Chris and Quinn to drive across town for my CT scan, then across the street to the hospital for the ultrasound of my heart. I grabbed coffee between my tests, and a sandwich afterward, before heading a couple of miles south to my infusion center for chemo.

My nurses all asked if I'd had a rough weekend thinking about my scan (results of which I'll get Wednesday afternoon). The truthful answer is no, because it's hard to think about an upcoming scan when you're chasing toddlers and marveling at perfect summer weather and attempting to stay upright while dancing on a spin bike.

I wonder if I can get a prescription for a trip to Portland every three months?

Around the Web

I felt like I crawled across a finish line when Quinn finally fell asleep last night, even with my mom visiting last week to help lighten my load. Being a single parent is hard work (I know -- and it is hot in Phoenix, and the songs in Frozen are catchy), and I promise this is not a guilt trip, Chris. So my posting schedule is all over the place lately, but you guys are enjoying your summers at outdoor BBQs and lake homes and not reading blogs anyway, right?

For those of you still following along, here is what caught my attention on the web this week since my last one of these.

I kinda wish I'd done this.

Super early results, but exciting discoveries nonetheless.

"A study led by Princeton University researchers has revealed that the gene Metadherin - which is implicated in promoting the spread of breast cancer tumors - only stimulates tumor growth when the protein made by the gene interacts with a second protein known as SND1."

This sounds like a cartoon Quinn would want to watch: "Cyclotrons to the Rescue."

"Memorial Sloan Kettering has taken a leap into the future with the launch of a new cyclotron, a type of particle accelerator that will be used to produce radioactive molecules for PET imaging of cancers. The 44,000-pound instrument and the production facility built around it are expected to change the way our patients are diagnosed and treated by allowing doctors to examine and target tumors with increased precision."

One more breast cancer correlation to worry about...

Turns out there may be more than obesity and alcohol intake and the age you started menstruating and the age you had your first child (or whether you had children at all) and what deodorant you wear and how tight your bras are and now I'm just making things up (but you get the picture) to worry about when it comes to breast cancer risk. 

A test for non-hereditary breast cancer risk. (But will insurance cover it?)

And will the rate of prophylactic mastectomies rise as a result? I am not sure what I would have done had I known about my risk ahead of time, but that is probably a thought for another post.

A new treatment for Her-2+ breast cancers? 

"In further experiments on mice, they used another treatment called 264RAD to target this molecule and found it completely eradicated the tumours. They will now carry out trials on women to test how well this treatment works alongside Herceptin."

If you remember, Herceptin was one of the drugs I was on for more than twenty-one months. Kadcyla, the drug I'm on now, is a chemo piggy-backed to Herceptin. It seems to be working, but I am always on the lookout for new treatment options coming down the pike.

And speaking of crawling across a finish line...

Just 5 more days until my team and I walk nearly 40 miles in 2 days to highlight our masochism the fight against breast cancer. If you'd still like to contribute, just click the link above. Or buy me a beer at the finish line in San Francisco.