Sunday, April 13, 2014

Day 1,399: False Dichotomies

I think this is the longest I've ever gone without writing in KatyDidCancer. I just haven't had any motivation to say anything; I've been feeling more and more like I just can't THINK about things. I'm starting to wonder if maybe I do have some kind of chemobrain, or if things have finally caught up to me and now that I am "done" with treatment (again) it's beginning to dawn on me how different I am in some respects. I get so much done, and yet...I can't plan. I can't worry. I can't...THINK.

So who the hell am I?

Well, I guess I'm the one who eventually comes back here, to pontificate on something that's been tugging at whatever's left of my brain. Recently a woman who is a member of a facebook group I belong to for TNBC survivors said she had overheard a few women talking about cancer and saying that they would never do chemo if they had cancer because Suzanne Sommers didn't do it and she was fine (or something like that). We cancer patients, especially we breast cancer patients, get to hear this kind of stuff all the time. There is a trend in our society to put forth dichotomies between science and faith, natural remedies and supposedly unnatural remedies, lifestyle and luck, environment and genetics, profit and altruism.

When it comes to something like cancer, all of these dichotomies are essentially false.

I am not a religious person, but I have never understood the dichotomy that some people believe exists between science and faith. I think I am the ONLY non-religious breast cancer survivor I know. Of course people lean on faith to help them through cancer. They use science too. No one ever said you couldn't pray your way through chemo.

And people use "natural" remedies as well in the form of vitamins, supplements, acupuncture, and other "non-Western" strategies. Often, they do this along with surgery, radiation, and chemo. In fact, every cancer center I have worked with has offered wellness initiatives (yoga, group therapy, meditation) as well as access to free "alternative" services such as acupuncture, reiki, and massage. I've never met an oncologist who would tell you NOT to do these things if they help you. In fact, I relied on acupuncture in lieu of pretty much all of the side effect meds I was offered during my first round of treatment. They didn't even bother to offer me meds the second time, as my side effects to the side effect meds were worse than the problems they were intended to solve. I was encouraged to try other things BY MY MEDICAL TEAM at a major research hospital. Furthermore, I always find it frustrating when people say that medicines, especially things like chemo, are "unnatural" but alternative remedies (usually those that are not approved by the FDA, for example) are "natural." What is "natural" about a coffee enema? There might not be much difference in the "natural" remedies people take compared to even extreme forms of medicine, like taxane-based chemos. Do you know what Taxol is? It comes from yew tree bark. That is pretty "natural" I would say. And if you ate it in the wild, without it being treated for human consumption first? You would die. There are those who are putting forth remedies that have not been tested for safety that might be just as harmful, even if they SOUND safer.

And there is no oncologist out there who is going to tell you NOT to exercise or eat healthy. But it is nice when you have been working your little ass off to do those things and your cancer comes back anyway and they don't BLAME you for it, because they understand the role that luck plays in something as elusive as cancer.

There are those who look for problems in the environment as a way to explain cancer, especially for those of us who are supposedly not "genetically inclined" towards cancer. Of course, the number of potential genetic mutations that could explain cancer is probably almost limitless, and right now we have a grand total of one clue--BRCA--into what causes a small fraction of breast cancers. So it's entirely possible that my cancer COULD be explained genetically, if we knew more about genes. Is pollution a problem? Hormones in the milk? Hormones that we are pumping into our bodies every day to stop us from getting pregnant (oh wait, sorry, I've broken the cardinal rule of breast cancer by bringing that up)? Well...sure. But the reality is that we all live in the same society, and most of us live in large urban areas where there are issues like pollution, lead paint, toxins that get in the water, and the like...and some people get cancer while others don't.

And finally, the idea that Big Pharma is out to get people like me while all the altruistic healers are being held down by the man is something that grates on my last nerve. There's always some dude who never went to medical school and has never directly treated a cancer patient who will write a book and gain a bunch of followers for his "cure" for cancer. And you know what? That dude doesn't give away his books. His "treatments" cost money, and he usually requires that you buy them directly from him. His "spa" and "camp" offers might set you back upwards of $10k or more. That dude isn't offering you jack shit for free. And if you die or your cancer comes back, he will often cook his books and change up his statistics so that your poor outcome is hidden from the public...because no one is regulating him. Now, do I think that pharmaceutical companies are altruistic? No, I don't. I think there's big money involved. Do I think there are issues related to doctors working too closely with these companies? Probably. But I also know this. My oncologist makes the big bucks whether or not I take chemo, whether or not I go to an acupuncturist, whether or not I take side effect meds. He is the one who said to me, during my visit when I needed to decide what to do about chemo for my recurrence, that he wasn't going to tell me that more chemo was better, because that wasn't true. He wasn't going to tell me I would have a poor prognosis if I didn't do chemo, because he didn't think that was true either. He recommended chemo for me because there isn't a single other thing that has proven effective for my disease. Not. One. Thing. And I'd love to know how I am being milked for all I'm worth due to my reliance on a large traditional research hospital. I have decent health insurance. After all has been said and done, I have probably paid less than $2,000 for all of my cancer-related expenses, and that includes $800 spent on the non-standard BRCA test I did in 2010, which wasn't covered by insurance. I have spent more on acupuncture than medication.

So there are some of my gripes with these false dichotomies. Now let me get to what I actually wanted to say.

I think about those women, and people like them, quite a bit. The women who make the choice they could not possibly make without being in that situation, the people who judge others' circumstance without even slipping their pinky toe inside the other's shoe. I find such people tiring, and not really worth the effort of explanation. What I DO find important and worth discussing, however, is this:

What are these people so afraid of?

I would never do chemo, they say. NEVER.

Huh. Why not? I had some of the worst side effects to chemotherapy that my doctors and fellow cancer patients had ever heard of, I hated it with every ounce of my being, it kind of brought me to my knees.

And then?

I went and did that shit again.

I chose a different poison, but it was poison all the same.

I did that knowing I could do it. The body is resilient. I wasn't afraid of being bald, or fatigued, or nauseous. I was afraid of unknown effects, I was dreading the potential for neuropathy and menopause and all of that, but you know...I had been there. I have clear memories of my little bald self weighing in at 111 pounds and weak and tired and having incessant hot flashes, wearing no makeup (do I get to take credit for that no makeup selfie for breast cancer awareness trend?) not having slept in an entire week and yelling my head off at my oncologist because at the moment I hated him with the fury of a thousand suns with his casual dismissal of my problems. And I remember my hatred just growing as he looked at me in that slightly patronizing manner and said I was fine. Because I didn't feel fine. I was suffering.

And now I can see myself as he saw me.

He knew I was suffering. He knew it was hard.

He knew I could do it.

He saw me there, pissed off, spouting off research at him, yelling, and he saw vim and vigor where I saw nothing but absurdity in myself. He saw youth where I saw age. He saw someone who still had the energy and sense of herself to fight him. And most importantly, he saw someone who had a terrible and aggressive disease, a disease that was a hell of a lot more likely to kill her than chemo.

And I know something now that I guess I have always known. I know that suffering is a part of life, and it is one you can manage. I know that life can include excruciating pain, both emotional and physical, but that pain ends, or at least it fades. I know that disfigurement and disability are preferable to death. I know there is no heroism in the fear of suffering, no martyrdom offered to the afflicted.

Sometimes medicine makes you suffer. Sometimes it's worth it, and sometimes it's not. I know it was worth it to take that liver-killing anti-convulsant medication from age 6-17. Having 100 seizures every single day would have done a whole lot more damage than the admittedly toxic medication. I went from having 100 seizures a day to seizures a day.

The thing about medication (hello polio and small pox vaccines! thank you for eradicating those diseases off of the face of the earth!) is that sometimes?

They work.

They don't always work. Chemo doesn't always work; its effects might work immediately to eradicate cancer only for the patient to develop mets years later anyway. About a third of people with epilepsy don't respond to medication. Unfortunately, the vast majority of those people don't respond to dietary changes or other remedies either. That is one of the reasons that epilepsy can be so deadly. There are roughly the same numbers of Americans living with epilepsy as with breast cancer--about 2.8 million. While about 40,000 women (and men) are estimated to die from breast cancer every year, the number is 50,000 for epilepsy. Some of those deaths will occur in children, a fate that at least so far is spared those with breast cancer.

I guess I am writing this just to say that I believe that there are forces in our society that have worked to attempt to counter the tragic effects of some terrifying conditions and diseases. They have not always been successful, nor completely altruistic in nature. But I also do not believe that their intentions have been to destroy people like me. And in spite of all that's happened, there is still a part of me that hopes this:

Maybe, just maybe, this worked.

That's what we have--science and faith and hope, technology and art, progress and the knowledge that some things never change. All we have is this human striving for immortality, the one thing we collectively know is impossible to achieve. And because we know that desire is futile, we try to do something that isn't. It's in that space where we live our best lives.

Or, at least, someone sold me that line--and I bought it, hook, line, and sinker.


  1. No comment other than I'm reading and thinking about your words, as always.

  2. I hope it worked, too. Because ... you guys.

  3. I get so angry when I hear people say there will never be a cure for cancer, because the pharmaceutical companies would lose money. There's money to be made in lots of ways. I'm hoping you are well soon.