Milestones

Quinn was five months old when I was diagnosed with Stage 4 breast cancer. At the time, the statistics I could find (when I dared to look) said about twenty percent of people with metastatic breast cancer would make it to the five-year mark. I couldn't help myself; I equated that statistic with me having a one in five chance of watching my son start kindergarten.

Kindergarten is still two years away. I am not there yet. But I am doing exceptionally well (knock on so much wood).

Quinn started preschool this week, after a short summer break and at the same school he's been attending since last October. School -- if you can call it that -- is not exactly new for him, but he has a new teacher with new friends to make. We bought him a new lunchbox, green with dinosaurs on it.

A lot of the moms of kids in Quinn's preschool are starting to chat about which school our kids will go to for kindergarten, and, slowly, I've found myself joining the conversation. I've spent the last couple of nights (crazy wild weekend here!) researching charter schools and open enrollment options for the public elementary schools in the districts next to ours. Although we love our house and neighborhood, we are nestled between two excellent public school districts. Ours, on the other hand, is just okay. I'm not sure I'm willing to accept "just okay" in a state with one of the worst public education systems in the country.

A lot can happen in two years. Cancer is a sneaky and unpredictable beast, and I still live in three-month increments. But as I was reading about different charter schools' philosophies late last night, it dawned on me that -- sure enough, statistics be damned -- I am starting to make actual, real-life plans to be here for Quinn's elementary school years. I am letting myself believe this could really happen.

We also bought Quinn a big boy bike this weekend. At REI, we couldn't get him off the darn thing. For at least half an hour, he wound his way expertly through tent displays and racks of clothing and the rock-climbing gear. He paused to check out the ropes hanging from the ceiling. "One sport at a time," I cautioned him as he tried to pull himself up by the carabiners.

And then I caution myself because I don't want to jinx anything: one milestone at a time.

Throwing Spaghetti at the Wall

For our fifth wedding anniversary last month, I had my makeup done professionally. Chris and I were going out to dinner, and I wanted my eyebrows to look better than when I do them myself. Nearly a year post-chemo-chemo (which is how I might have to refer to it from here on out), I have to shave my legs twice a week but my eyebrows and eyelashes remain scarce.

Cancer, you're an unfair bitch, you know that?

Here's the best photo we took that night, which isn't all that great (poor lighting, taken by the babysitter using my phone after Chris and I split a bottle of wine at dinner), but I am happy with my eye makeup. And my handsome husband.

As I was being beautified for my date, I got to talking with the makeup artist about cancer. His brother is a colon cancer survivor, and he was curious about what I was going through. I explained that mine was Stage 4 from the beginning, so I'm still in treatment. 

And as he was applying my blush, he followed up with this zinger: "Didn't you feel a lump or anything?" which is kind of like asking a lung cancer patient whether they'd been a smoker. 

This question, these types of questions get to the heart of so many excruciating feelings I carry with me (but am trying to shed). Why didn't I catch it sooner? What did I do wrong? Why me?

This question, these types of questions are looking for a smoking gun. I get it. We want to be able to explain cancer, to find the thing that makes us different so we can assure ourselves cancer won't happen to us. We want to have control. 

It isn't easy to accept such a monumental lack of control. That is part of what makes cancer -- and life, if you want to extrapolate -- so frightening. So I control the things I have any say over: my attitude (sometimes), how I spend my time, who I surround myself with, what treatments I undergo, how much wine and chocolate I consume. What I cannot control is how any of those things will affect my outcome. Simply, I cannot control how long I'll live. I'm not that much of a superwoman. Yet.

When you're given a cancer diagnosis, though, you get bombarded with a million suggestions about what to eat (or not), what type of medicine to take, who to pray to, which surgeries to endure -- in order to (presumably) live a longer life. In order to pretend you've got some control. 

Maybe I wouldn't have gotten cancer if I'd eaten less pasta, but I like pasta. And I know plenty of people who eat more carbs than I do and never develop cancer. Maybe I could get rid of my cancer if I had more Vitamin C (or D, I forget) in my diet, but so far as I can tell, the science isn't there. In fact, my oncologist and my naturopath have given me the absolute opposite advice about my Vitamin C intake, so I take a multivitamin and drink the occasional glass of orange juice, but I haven't opted for intravenous infusions of it. And maybe my double mastectomy was superfluous, as one oncologist suggested months after I'd had both my breasts amputated, but you know what? The surgery made me feel safer. 

I go through periods of extreme second-guessing about what I could have done to bring this on. Then I stop beating myself up and remember the numbers. Also: why anyone? Here's the hard truth: one in eight women will get breast cancer. One in thirty-six will die from it. A harder truth? Half of all men and one in three women will get some form of cancer in their lifetime. Cells mutate for inexplicable reasons -- whether we practice yoga or never eat fast food or take our makeup off every night before bed. We can follow all the rules and still get cancer. It is that random.

We can pay attention to our bodies, we can catch cancer earlier if we're lucky, we can even prevent some types of cancer, and we can take care of ourselves so that our bodies are equipped as best as they can be to fight off disease. And then cancer may still show up unannounced, may still metastasize, may still take us from the people we love much earlier than we'd like. We simply do not know how to stop that from happening. Yet.

When you're given a cancer diagnosis, you do what you can to get through, even if you're just throwing a whole bunch of spaghetti at the wall and hoping some of it sticks. Plus, sometimes throwing things at walls is exactly what you need after a cancer diagnosis. 

An Advocacy Request

I'm just going to come right out and say it: I am beating the odds already. There are all kinds of statistics out there for the survival rates of patients with Stage 4 breast cancer. Most of them are pretty grim.

After all, there is no Stage 5.

And of course I can't remember where I saw it, but I've read a few times that the median survival time once metastases are detected is twenty-six months. That's not that many months. Ask any mother.

Only about one in five people with Stage 4 breast cancer live to see their five-year cancerversary. Go ahead and re-read that sentence. I'll wait for you.

Of course, there are a million factors that determine how any one person will fare -- extent of metastases, responsiveness to treatment, overall health other than cancer, sheer dumb luck, to name a few. So it's nearly impossible to predict accurately how long someone will live once diagnosed with cancer, and my doctors have never given me a timeframe, other to say they can treat this for years.

Then again, I've never had the heart to ask, "How many years?"

Deep breath. As of about a week ago, it has been twenty-six months since I was first diagnosed. Twenty-six months that I've been living with breast cancer. Twenty-six months since that August afternoon in Phoenix when my blood ran cold and my mouth went dry and I knew the lump was too large to be good news but I researched the statistics for survival anyway because that's what we are led to believe: everyone survives breast cancer. It's PINK, for God's sake. 

I plan to continue beating the odds, to the extent I have any control over it, which, quite honestly, I don't. I'm saving that rant for another post. Please come back in a few days.

This is when I have to remind myself of something my father-in-law often said after he was diagnosed with pancreatic cancer: Statistics don't mean anything to the individual patient. Every body is unique. Every story is different.

Still, it is hard not to take note when you pass certain milestones, especially after you've seen so many friends die. On the other hand, I've also seen many friends live. I know a number of women who are living full lives with Stage 4 cancer five or ten years out from their initial mets diagnosis. "What's your secret?" I want to ask each of them, as if there were a single right answer, as if I could take any one of the suggestions that has been proffered to me from people without cancer (avoid all sugar, don't use plastic, don't eat anything processed, clear your energy fields, tie up emotional loose ends, drink a juice from a guy I know in Mexico, visit this guy I've heard about in Brazil, drink more red wine, avoid all alcohol, and on and on) and -- poof! -- I'd get to live another dozen years, and then a dozen after that if I'm really lucky. It would be nice if it were that simple, wouldn't it?

During the Avon Walk I did last month, I met a woman who was diagnosed Stage 4 nearly eighteen years ago, and continues to stun her doctors with how well she's doing today. She's an outlier; these cases aren't typical. But I think every one of us facing this disease wants to be that outlier, the one who's walking 39.3 miles over a weekend twenty years removed from when the disease first struck.

After all, Stage 4 breast cancer wasn't supposed to happen to us, either. For those of us as young as I am, we are already statistical anomalies, so why not aim for winning the lottery, too? It could happen.

As Breast Cancer Awareness month comes to a close, please think about the fact that, currently, only about five percent of research dollars are spent studying metastases, even though mets are responsible for every death from breast cancer. Maybe if we focused our efforts a little more, more than one in five of us would make it past the five-year mark. Maybe more of us could start to live with this disease long-term. Maybe more of us could watch our children grow up.

As the month comes to a close, I urge all of you to write your Representatives and Senators (as incompetent as they may seem lately) to maintain science research funding levels, specifically the Department of Defense's Breast Cancer Research Program and the National Cancer Institute. If you've never written Congress before, here's what I wrote to my own Congresswoman (feel free to use the parts of it that make sense for your letter):

Dear Rep. Sinema,

I was just 32 years old when I was diagnosed with Stage 4 breast cancer. My son was an infant, and I was nursing when a pesky lump wouldn't go away. By the time my doctors took me seriously, it had spread to my lungs, spleen, and lymphatic system. 

Today, I still receive chemotherapy every three weeks, and the cancer is stable. I have been in treatment for more than two years now. I have lost my breasts, my fertility, my hair (twice), and a number of friends to this disease. 

I am one of the lucky ones because I am still here. 

As breast cancer awareness month comes to a close, I hope that we can begin to move beyond awareness toward better education about the realities of breast cancer and, one day, a cure. 

As Congress -- I hope -- moves toward a consensus on a budget and long-term funding for our government, I urge you to press for continued funding of what we really need in this breast cancer fight: more research. Please vote to maintain consistent funding levels for the Department of Defense's Breast Cancer Research Program as well as the National Cancer Institute. 

Forty thousand people lose their lives to breast cancer every year in this country. Those of us living with this disease live our lives in three-month increments as we wait for results from scans that tell us whether our current treatment is working or that we've run out of options. We need more options, and quickly. 

My little boy is depending on it.

Sincerely, 
Jennifer Campisano

In what seems like a previous lifetime, I was a congressional lobbyist in Washington. I might as well draw on that knowledge for something, right?