Results Not Typical

My head is still spinning from my meeting with my oncologist Friday morning. They always say to take a tape recorder to these appointments, and you know what? They're right. Because it's impossible to remember how everything is said, what specific words or tone of voice are used, which questions you asked versus which ones you just thought in your head but forgot to say out loud. Before you know it, you're being shuffled down the hall for blood work and told he wants to see you again in a month.

Here's what I do remember.

My heart was racing and I felt like I was going to vomit. I grabbed a few tissues out of the box so I wouldn't be caught off guard if he came in with bad news. When he walked in and announced, "No cancer!" I realized I'd been holding my breath.

It feels so good to breathe again.

My results are not typical. I am lucky beyond measure that I am responding this well to treatment. Aggressive breast cancer like mine was does not normally wax and wane the way mine has, even with the world-class drug options I've got. My oncologist told me he was perplexed by my case and up all night trying to figure out what we should do next -- meaning, should I continue to take chemo for a cancer that (for now, at least) appears to be gone?

I have been in this position before. After my first round of chemo, just two days before Christmas 2011, I got the news that my scan was clean. Seven months later, the cancer was back and I started my second round of chemotherapy. Two clean scans and six months of grueling treatment later, I got to take a break in January of this year. By May, the cancer had reappeared.

For now, I am winning this game of whac-a-mole.

So when my oncologist asked me whether I wanted to continue on my current drug or take a break and see what happens, I asked whether there were any long-term toxicity effects for TDM-1/Kadcyla. Being told that there are not, I opted to maintain my current treatment and continue getting infusions every three weeks. There are side effects, yes, but it's a trade off I'm willing to take to keep cancer at bay and my sanity within reach.

We'll reassess in another three months, with another scan and decisions to make based on what it shows (or doesn't). I have heard rumors of women being able to stay on this drug for years. These types of claims cause hope to take root. And sometimes you just need a little glimmer of hope to hang on to.

***

Last weekend, to try to take my mind off my upcoming scan and get out for an overdue date night, Chris and I went to see Gravity in 3D. Chris didn't love it, but I couldn't stop thinking about it for days afterward. I think the last paragraph of this review sums up why:

If anyone asks me what "Gravity" is about, I'll tell them it's a tense adventure about a space mission gone wrong, but once they've seen and absorbed the movie, they'll know the truth. The root word of "Gravity" is "grave." That's an adjective meaning weighty or glum or substantial, but it's also a noun: the location where we'll all end up in time. The film is about that moment when you suffered misfortune that seemed unendurable and believed all hope was lost and that you might as well curl up and die, and then you didn't. Why did you decide to keep going? It's is a mystery as great as any in physics or astronomy, and one we've all grappled with, and transcended.

3...2...1...Xanax

I had a PET scan this morning, my eighth one since I was diagnosed in August 2011. Somehow, it hasn't gotten any easier to handle the emotions leading up to these things. Predictably, a couple of weeks ago I started getting a little more irritable and a little more sappy than usual.

I start wondering if it's worth it to plant a garden or buy a new pair of jeans because you just never know. A bigger issue than my cancer, garden-wise, is that I am like hospice for plants, my thumb is that black. But still, I start getting anxious about all of the things in my life, not just cancer. Did I remember to shut off the oven? What is that bump on Quinn's neck? Please, God, don't let Chris get deep-vein thrombosis from all his traveling. These thoughts are not helpful and some even border on ridiculous, but that's anxiety.

So when the technician came over to let me out of the machine after my scan this morning, I said, "God, I hate these things," and she replied, "Really? You could have fooled me. You looked so calm in there." Clearly, I missed my calling as an actress.

To be clear, it's not the scan that induces my anxiety, but the results, which I will find out tomorrow.

Worst case scenario: the scan shows progression, meaning the drug I'm on has stopped working. I would have to switch drugs, which would mean a return to something more toxic and all it entails: hair loss, nausea, destroyed immune system, lots of crying.

Also, the longer you're responsive to a particular drug, the better, because -- well, time. Time that researchers can come up with other treatments, time you get to spend with your family, time the cancer -- as one friend described it recently -- spends in a box, doing no damage.

Best case scenario: no evidence of disease (NED), which I last experienced ten months ago. This would mean that the drug I'm on is continuing to work, and work remarkably well. This is the holy grail of cancer statuses. Some women -- I've heard -- have been NED for years on the drug I'm on.

Second-best case scenario: stable/no progression/slight decrease in cancerous activity and/or size of tumors. This would also be acceptable.

If it's either of the two latter cases, I will stay on my current medication, which isn't side-effect free, but it's tolerable. Tolerable is so so SO nice, and it would also mean I'd get to have hair for my first holiday season since 2010.

***

I arrived at the hospital at 7:30 this morning. I have to walk across this bridge from the parking lot to the PET/CT center, which was deceptively peaceful at such an early hour.

I had to sign several forms assuring them I'm not pregnant, they tested my blood sugar, and then they injected me with radioactive glucose. Nothing felt different. I didn't ask any questions; I know the routine. I am becoming old hat at this.

As she shuffled me out the door almost two hours later, the technician told me to have a great weekend. I thought, Well, that depends, but I simply told her, "You, too." I was a little worried I'd start crying or read something newsworthy on her face if I got snarky with her.

Tomorrow I get my results, and then I can lay off the Xanax for a few more months until it's time for the next one of these things.

I'll let you guys know how it goes. Here's hoping for a great weekend.

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. 

A Selfie

I have about a half-dozen half-written posts about a number of things: the invisible scars of breast cancer, trying not to blame myself for Stage 4 cancer, having the hard conversation with my mom about my fears, my scan next week, and managing being a parent while in the throes of treatment. But while my scatterbrain works out the details of how best to finish those and share my thoughts with you all, I thought I'd update you on my hair. 

It has been awhile, after all.

I got it cut this week, while I try to let the sides and top catch up to the party in the back. And I'll probably keep it short, but I want any pixie cut to be my decision, not just the only option because that's how chemo left things. Who knew I was such a control freak? 

Also, for those of you keeping track, my hair's texture is changing, and I don't know if that's the length (relatively speaking) or being nine months post-chemo-chemo. It's still got wave and body, but less actual curl now. One of these days, maybe my bedhead will even calm down.

In the meantime, I'm hoping I get to keep playing with it just a little while longer. My scan next week will determine whether I get to continue on my current chemo or have to switch things up, which would probably mean putting my wigs back in rotation. For the record, I much prefer my own hair, crazy bedhead and all.

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?