Day 642: Making Decisions in Cancer-Land: What Would Steve Jobs Do?

It’s going to be impossible for me to follow the last post that I wrote, the one about Komen and Planned Parenthood, so I’m not even going to try. (Instead, I’m going to gratuitously put another famous name in this week’s title to see what happens). That blog kind of blew up on me—it’s the third most-read post I’ve ever written, after the GI Jane one (when I had my head shaved during chemo) and the aptly titled Lumpectomy Blog. And it was written just five days ago—folks have had a year and a half to find the other two. I guess this is what happens when breast cancer gets in the news for all the wrong reasons, and small angry ladies who happen to be breast cancer survivors then decide to sit down at the computer and let loose. Incidentally, other not so positive things can also happen when folks start paying attention to you—my Shit Moms With Cancer Say blog was deleted by Google soon after the first few hundred people read the Komen post. Was it deleted for swearing? Copyright infringement? Who knows. But I’m wondering who the hell is spending time deleting my cancer blog, what with all the child porn and bomb-making instructions and such that one can find on the Internet. Oh well.

My mind is still racing about the Komen fiasco. There’s a part of me that’s glad that behemoth breast cancer organizations are now being looked at with some scrutiny, as folks start to question where all the money is really going. At the same time, I am actually more interested in the research-based work that groups like Komen fund than the breast-cancer related services that Planned Parenthood is able to provide women, even if it makes me a straight up cancer bitch to admit it. Most PP offices aren’t equipped to give mammograms, let alone ultrasounds or biopsies. What they provide are manual breast exams; they provide the hands that feel us, if you will. This can be very important for women who don’t have access to regular doctors—though at the end of the day, most women find their cancerous lumps themselves. The question remains: for lower-income women, or those without health insurance, what’s next? PP finds a lump and recommends follow-up care somewhere else…and then what do you do?

I guess what I’m saying is that we have bigger problems with access to critical care for women in this country than Komen or PP represents. I’m glad that Komen was taken to task. But I also wonder, ok, who is going to pick up the slack if donations fall? Some of us out here live in the breast cancer periphery; we’re the uncool kids who don’t have estrogen-positive cancer that can be treated with tamoxifen or halted by staying skinny or exercising a lot. Who’s going to fund real, experimental research on triple negative breast cancer if even flawed groups like Komen don’t do it?

Who’s going to stop making us choose between organizations that are trying to help us? I think it’s great that people started pouring funds into smaller breast cancer organizations, into Planned Parenthood itself, and into other charities because they were pissed at Komen. But I also know that most of those smaller organizations cannot—simply cannot—do much to try to find a cure for breast cancer. We need screenings, support groups and fitness clubs. But we also need to figure out why so many women get breast cancer, why breast cancer behaves and presents in such fundamentally different ways in women under 40 (and is especially different for those under 35), how to protect against contracting it in the first place (don’t tell me it’s always all about being fit—my size 2, 117 pound, lactating self with three aggressive tumors would beg to differ), and how to develop alternative treatments or chemotherapies that don’t cause devastating side effects. Komen might not be the best way to do that; I don’t know. We need real research dollars to go beyond those things that are directly in the interests of pharmaceutical companies that can reap big profits from the results, no matter who funds that research. I’m just saying.

There’s another thing that’s tugging at the back of my mind related to the whole Komen debacle. Those fighting Komen made the argument that this isn’t about abortion, and shouldn’t be about abortion. As you know from the last blog, I completely agree. And yet, those of us who are young women with breast cancer know something you don’t know. In some ways, it IS about abortion. In some far-off, worst-case scenario ways, it is. Because we are not supposed to have children; we are not supposed to get pregnant. If we already have children, we are told—right away, as if it’s nothing, as if this is no great loss to bear—that we are done. We can’t go on the pill or any other hormone-charged contraceptive due to the nature of our cancer, so our options are relatively limited. Of course, since chemo will kill our ovaries and throw us into menopause, most doctors don’t bother to talk to us about birth control at all; if they tell us anything, it’s that we might want to freeze some eggs. If we actually bother to do some research and find out what that entails—the shots, the hormones, the surgery, the exorbitant expense—it doesn’t seem like such a good deal most of the time, especially since no one wants us to use those eggs for at least five years. If you are a smart-ass annoying cancer patient like me, you ask a lot of questions about this. Why? What’s magical about five years? Is that how long it takes for chemo to get out of your system? Is that how long it takes for our hormones to correct themselves? Is that the number you give because most women with breast cancer will go on Tamoxifen for five years and be in medically-induced menopause (though that’s not relevant for me)?

If you are in a small minority of “lucky” patients, and you get an honest fertility specialist to talk to you, she will tell you this: “None of those are the reasons we don’t think you should have children. Pregnancy and lactation do all kinds of things to your hormones, and this can cause recurrence. Because you are already most likely to have a recurrence in the first five years, we advise you not to get pregnant. The question is, Katy, if things don’t go well, would you want to leave behind two children or three? I know that’s a hard thing to hear, but that is what you need to decide. If you do get pregnant, we would counsel you and recommend that though you have other options, you should probably terminate the pregnancy.”

You read that right. That statement was not made by a left-wing politician, a women’s clinic, or some off the wall feminist organization. That statement was made by a fertility specialist that I met with during my treatment. I would surmise that she, and others like her, had seen enough shit hit the fan that she had good reason to say what she said, no matter how horrible it was for me to hear her say it. Many young women with breast cancer, including those with adorable children they love more than life, including those who are in passionate loving marriages, including those with stable jobs that remain stable even throughout their experience with cancer, are told that if life throws another curveball and an unintended pregnancy occurs, we might want to…have an abortion, for a variety of reasons—in order to protect against cancer recurrence, save our own lives, or protect our husbands from the burden of single parenthood.

So in some unfortunate aspects, it is about abortion, though not in the way that most people think. Now, I am absolutely pro-choice, but I would rather eat glass than face that decision myself. I actually don’t think I could do it; I am about 99% sure I would have the baby, against everyone’s well-meaning advice, if I were in that situation. So instead of face that decision, I have become like a paranoid teenager, freaking out every time my new 25 day cycles (they were always at least 32 days pre-cancer) turn into 28 day cycles. I become so scared sometimes that I am brought back to those few lonely walks to the pharmacy my freshman year of college, when I had to bite the bullet and buy the pregnancy test, go back to the dorm, and pee on a stick, almost wanting to vomit from the fear of what I would learn. I don’t have those “oh, we were being spontaneous, we forgot the condom” moments. I have those moments where I slap Gabe in the face and tell him to get away from me if he hasn’t wrapped it up.

We continue to talk about him getting a vasectomy, as that is the only surefire solution. Condoms are fine, but not 100%, and we are told to go for 100%. It is a strange fact of life that some are up in arms about new requirements for employers to provide health insurance that covers the pill, when I can’t think of any employers who have issues with health insurance companies that provide vasectomies. I also can’t think of any health insurance companies that DON’T cover them. To continue on this theme, I find it hilarious that there are legions of doctors who will give teenage girls the pill and then tell 36 year old men, such as Gabe, that they are too young to make a decision as final as vasectomy. Every man in my parents’ generation of my family had a vasectomy before 30, so times have definitely changed. Finally, how can I explain to anyone that I feel guilty even considering this option, as I still think, in the back of my mind, that if I don’t make it out of this mess, I’d like for my husband to be able to have children with someone else?

There’s so much more behind these conversations that others are so flippant about, these conversations about cancer screenings/exams, abortions, and birth control. So many things that other people have never even thought about. It’s almost not worth getting into—and yet here I am, getting deep into it, for those who are interested in reading about it.

But you know, most of the time I don’t think about these things in any conscious way—they are just there, in the back of my mind, when I roll my eyes at every news article. These thoughts are lurking there when I go to the oncologist’s office for my three month checkup, as I did this morning. Damn, did I rock that appointment—it was the fastest one yet. I weigh the same, have great vitals, I look great! Doc will be here to see you soon! And then lo and behold there he is; I barely had to wait five minutes. He shakes my hand and attempts some small talk. He’s so bad at it, it’s almost—almost—endearing. He asks me if I’m taking any medications, if I feel any lumps and bumps, if my arm has swollen at all, if I feel fatigued, if I have new pain anywhere in my body, if I have hot flashes, if my periods have stopped. I say no to everything, tell him my periods are more regular than they’ve ever been in 25 years of having cycles (“we reset you with that chemo I guess!” whoa is he hilarious), and that physical therapy did wonders for my chronic pain and range of motion problems. Then he takes off my gown, looks at my breasts, raises my arms, feels around, literally uses his hand to push on my chest to gently coax me to lie down, feels my breasts again, and tells me, AGAIN, that I look great.

It kind of felt like a date with someone I didn't really hit it off with, except there was less small talk and in the end I had to pay and walk myself back to the office.

So there it was—I’m 20 months in now, getting closer to that crucial 2 year mark. Afterwards, as I walked from one end of downtown Chicago to the other, I got myself some coffee, gave someone directions to Union Station, and said thank you to a random stranger who shouted at me “I love your bag!” I was far away from cancer at the same time that I was walking directly away from it. So goes the surreal nature of a cancer survivor’s life--so surreal that I thought about posting something on facebook about the oncologist appointment, as I know everyone likes to get those updates, and instead I decided to post this:

Some people go on romantic trips, take walks along the beach, or go to fancy restaurants. 8 years ago Gabe and I got in one of our first big fights--apparently, he was nervous about something. That night, as we sat silently in our flannel pajamas getting ready for bed, he pulled a ring out of his pocket and said: "I'm sorry about everything Kate. I still want to spend the rest of my life with you. Will you marry me anyway?" So, here's to doing stuff anyway.

I included the picture you see of us kissing above. That photo was taken on October 16, 2010—our six year wedding anniversary. I realized after I posted it that people might not understand why I chose that picture to go with the status update (there definitely aren’t any photos of us from February 7, 2004). In my cancer girl mind, it made perfect sense. The status is saying, here we were, in the middle of one of the most romantic moments of our lives, and life was just slapping us in the face, with the fighting, and the flannel, and our own imperfections and regrets and bad timing. Gabe could have waited, could have chosen a more opportune moment to propose—but he didn’t. I could have said something more swoon-worthy than “I’m going to have to think about it. Oh what the hell, ok yes, I’ll marry you.” But I didn’t.

The photo is saying, there we were, in the midst of the shittiest chapter of our relatively short marriage, there I am bald and fatigued and scared and two days away from my last chemo treatment, and my husband laughed and dipped me and kissed me in a beautiful garden as we celebrated our union at a romantic bed and breakfast while my mom watched our kids back in Chicago. We could have waited to go out of town until I was done with chemo—but we didn’t. I could have worn a wig, Gabe could have taken things more seriously, but I didn’t, and he didn’t. We just didn’t.

The status update and the photo are the same. Life is mundane—we eat, give directions, look across the river at the skyline like everyone else on Michigan Avenue. Life is difficult—we have to think about living and dying and contemplate horrifically impossible choices that other people have never faced. Life is romantic—the fog comes down and then lifts, strangers shout out to us in the din, and we feel light and free with happiness as the news of our normalcy sinks in and makes us grin like crazy people all the way to our final destination.

If we had known then what we know now, would we have done it—whatever “it” is? I guess I’m glad I can say yes, to just about everything that’s ever happened to me, everything that I’ve ever done. I could tell that sassy little seven year old girl, the one who used to wear the tshirt you see in the first photo above all the time, that it might be surprising, but it's true: Would I still? Would I anyway? Yes and yes. Why the hell not? Life’s short!