Friday, April 6, 2012
Day 701: Dear Doctor
I was very interested to read this article in Reuters today that suggests that you were actually right about things you said to me while I was in the middle of cancer treatment, even though they seemed so wrong at the time. When I was first diagnosed with breast cancer, I was in such a state of shock and ignorance that doctors could have told me that I needed to slice my ear off to cure it and I probably would have believed it--if only for a second, before I got as bitchy as you know I can be and started to argue the point in some kind of crazed voice. Before I met you, I understood that my experience with breast cancer was different from most of the other women I had met who had the disease. I fell into this weird "triple negative" category. I had multiple tumors. I was not only not post-menopausal, I was nursing, for God's sake.
So things would be different for me, I learned. I would not get an MRI, because there would be a "100% chance of false positives" due to the fact that I was lactating. After a bunch of ultrasounds and mammograms, including that sci-fi 3-D ultrasound, I was offered only one test: a chest xray, to see if cancer had metasticized to my lungs. I had no other scans of any kind. Because I was triple negative, presenting at 0% for all hormone receptors, there was no additional testing to classify my tumors. I did do BRCA analysis, because everyone assumed that a young, triple negative breast cancer patient would be BRCA positive. Everyone was wrong. Remember that?
This seemed strange to me. Don't I need to find out if cancer has spread? I asked. I really didn't get any answers. This looks like early stage breast cancer, I was told. Probably stage two. When I had surgery and my lymph nodes came back negative for cancer, I was downgraded to stage one, regardless of the existence of three cancerous tumors. After a second, probably unnecessary, surgery, I met you and started to make my plan for chemo.
And you didn't give me a whole hell of a lot to go on. You are stage one, and that is great news, you told me. Your cancer is very unlikely to have metasticized, but we need to make sure it won't in the future. There are no maintenance therapies for you so you have to do chemo. You told me that there were no material differences in the kinds of chemo I was offered (failing to mention the drastically different side effects, however). You offered me a clinical trial that included Avastin. When I challenged you on why I would be offered a clinical trial that was intended for late-stage breast cancer, for a drug that could bore holes in my lungs, intestines, and spleen, you said this: "Because you have a tumor of greater than 1 cm, you are eligible. Everyone in that case is eligible. We like to see people enroll in trials because that is how we do research. You are under no obligation to do it. It does not increase chance of survival in your case. These are all good therapies for you."
OK, Doc, no thanks, I thought. I didn't realize then that my honesty in thinking the whole trial was insane begot your honesty in telling me why you offered it to me. I didn't realize then why you looked at me so strangely when I rattled off all of the side effects I wanted to avoid by not taking Avastin. Jesus Christ, you must have been thinking. I gave this girl a 60-page document full of medical-speak on a clinical trial and SHE READ THE WHOLE DAMN THING. I should have seen that look in your eye that said, well ok. Here we go.
And then we started dancing, you and I. It was not a mating dance, but a dance of war. You had an unbelievably obnoxious way of seeming to deny everything that was happening to me when I started chemo. Most people don't lose weight on this regimen, you said. Morbid insomnia? I've never heard of a patient not sleeping at all for five nights. You are still vomiting? Impossible. Bone pain ten minutes after your neulasta injection? How strange. And then, your favorite turn, your favorite move:
"You look great."
Don't even get me started, doc. I'm bald, and I only weigh 110 pounds, and I am so weak I can't feed my baby his food with a spoon because my hands shake too much. Granted, I was somehow still going to the gym when I could and walking every day. But no matter. I started to self-diagnose, took myself off of almost all of the side effect meds (thanks for offering me that anti-psychotic medication to treat my....nausea?), and started acupuncture. I stayed with you because I heard you were one of the best, and because I loved your chemo nurse. Her bedside manner was almost opposite of yours, and she scoffed at the very notion that I should get a port if I didn't want one. She was patient, and she never blamed me. She agreed that I am some kind of freak who reacts badly to all drugs, telling me at one point "when you finish with cancer, don't ever take any medication. ever! for the rest of your life."
So I stayed. I stayed through continued denials about what was happening to me, allergic reactions, menopause, all of it. Maybe now I have some sense of why.
I made it through. You told me, "now you are done with chemo. You and I can just have, you know, social visits."
What was that? A hint of humor? Of humanity? Admitting that you knew I wanted to strangle you?
Every three months I've gone back to you. And here's the thing: Our visits are mostly, well...social. You talk to me, ask me questions, take off my gown, feel my breasts and push my body onto the table so you can feel some more.
You don't give me any blood tests. Nothing to look for tumor markers. No MUGAs, not after that first one to see if I was eligible for AC chemo, even though I had a heart problem on taxol. When I was in active treatment you refused to give me bone scans, arguing that I should switch my forms of exercise (erging, spinning) or stop wearing heels. We're talking about cancer and you're giving me fashion advice? Asshole!
Many people have told me to switch oncologists on this fact alone. Most of the women I had talked to with breast cancer got blood tests the moment they walked in the oncologist's office, even if they didn't know why. Multiple MUGAs could be routine. PET scans, CT scans, the works. But not for me; my dance instructor believed in only the basics. Nothing but mammograms? How do you know if cancer has spread? other survivors would ask incredulously. Well, according to you, I would know. I would rest, and wear flats, and my back pain would just get worse. It would never stop. If I was short of breath all the time, well, maybe I had breast cancer in the lungs, or a heart condition brought on by chemo. Headaches that don't go away with aspirin? For days at a time? Extreme fatigue? OK, maybe there's a problem. You always told me this: "I don't offer you tests and scans because you don't need them."
And here's where you made a mistake. All you needed to do was tell me WHY I didn't need them:
If I had metastatic breast cancer, knowing it now when I was asymptomatic, as opposed to knowing it in six months when symptoms appeared, wouldn't make any damn difference. My prognosis would be the same. You didn't tell me this. You didn't tell me that because I was triple negative, it was unlikely for my cancer to metasticize to the bone, like most breast cancers are known to do. Triple negatives usually attack the soft tissues, bypassing the bones and going to the brain, liver, or lungs.
And no matter what kind of screening I would do for that, I would not live very long if I had metastatic triple negative breast cancer to the brain.
And, further, I would have those months of my life back. You always tell me "enjoy the holidays" or "enjoy the summer," and now I understand. You ask about symptoms, and when I don't have any, you are pleased, and you assume my cancer has been held at bay. Why put me through more tests, more fear, more agony of wondering and waiting, if there will be no material difference in outcome?
Now I understand. But you should have told me. I am a very smart person. I am a grownup. It's my life, and my potential death, and you should have told me for this reason:
Because I asked you. I asked you over and over again. Some people don't want to know the truth, and I get that. Some women need the peace of mind that a clean scan or a good blood test can provide. Maybe most women need that. And you, you are a stubborn son of a gun and you don't believe in doing medicine for the sake of peace of mind, and you assumed I was like everyone else, so you didn't tell me.
Here's the kind of person I am: I don't want to do a mammogram right before a major event. Many people like to schedule such tests before holidays, for example, so they can get the good news and enjoy themselves. Not me. I see bad news lurking behind every corner. I want to enjoy what I can, then do what I have to do, and if the news is bad, well damnit at least I enjoyed Halloween, or Easter, or whatever.
I don't have a general problem with regular testing. I did it all my life. I had epilepsy, remember that from my chart? Every six weeks I had to do blood tests to see if my medication was poisoning my liver (it was, but not too badly, so I had to stay on it). I had to do regular EEGs to see if my seizures were declining or changing (they stopped on medication). These tests made sense to me even at six years old. I understood why they were necessary: dosage might need to change, medication might need to be stopped and swapped with something else, they might need to do something else entirely if medication didn't work.
So I get it. But it's not the same with early stage breast cancer, is it? You just have to hope that it went away, that early is what you had, and that it doesn't change on you. You just have to hope, and fear, in ways that other people cannot understand. And now I can see it. I felt wonderful when I found out I had breast cancer. I was so healthy, and vital, and alive. I had cancer for years, I learned.
I'm glad I had those years, wherein I gave birth to two beautiful children, and that I didn't know I had cancer.
I don't want my daughter to start getting mammograms at age 24 just because she is unlucky enough to have me, a young breast cancer survivor, as her mother. Who has children at age 24 anymore? Here's the thing. Lenny is built exactly like me. I can already see it. She's 6 and weighs 34 pounds. She and I have the same BMI of around 19. She's all legs, small feet, will have my small frame, and probably my small breasts.
And if she ever had breast cancer, she would know.
I felt it even though I was lactating and the odds were completely stacked against me to feel it. I have no fat in my breasts, just breast tissue, and, at the time, milk. My ob told me "you felt that thing as soon as it was palpable. I don't know how you did it but you saved your own life."
For the love of God don't take my daughter's sanity, fertility, and youth from her by making her do tests that will not cure her of a cancer that is either there or isn't there. Mammography doesn't cure a damn thing. But if something is found, it changes your life forever. And at age 24, I want her to have those years.
Of course, my daughter will never have breast cancer. If I have anything to say about it she will stay skinny, and never go on the pill, and unlike other parents who might struggle with their kids having kids at young ages, I'm hoping that Lenny has kids way before 30 if she chooses to have them at all. I can't let my mind go there.
Because it was all so awful, chemo especially. It was all so hard. It still is. There is a feeling of isolation that follows me like a cloud, a point at which I can't relate to women my age. I can't even relate to myself sometimes when I feel that I am having more pedestrian problems. I lost friends, and I lost some aspects of myself, but I am going to tell you this:
I would do it again.
I never thought I would say that, but I would do it again.
Because now I can see myself the way you did. I can see myself bald, and skinny, and exhausted, and ranting, and furious when you looked at me and deadpanned "You look great."
Because, after all, I was yelling in your face. Screaming, using big words, gesturing grandly in your office, about to start a fight. I was reading all the shit you gave me, exercising, raising my kids, going to work, having sex with my husband, refusing your advice on what medicines to take and just generally being a royal pain in your ass.
I was so...alive, wasn't I? I was still...me.
You could see it, and I couldn't. Just like when I saw this picture of me in a bikini, and I thought ugh, I look awful, I have no business putting a picture of myself wearing that online. I thought it would be good to follow up on my last blog, since I don't think I look like any kind of athlete in any way, and I thought it was funny to point out that all of my radiation tattoos are visible but I've stopped caring. While I was complaining about how I looked Gabe said, shut up Katy. How could you look fat in a size 2 bikini?
He could see it, and I couldn't. He could see me in a way that I couldn't see myself. So it was with you. I couldn't imagine looking like this now, considering what I looked like then. I couldn't imagine the future at all. And I thank you for sparing me the extra tests and the hand-wringing.
Now don't get me wrong. I never, ever in my life want to go have a beer with you. I think you need some serious help in the people-skills department.
But your cancer-fighting skills were apparently on point.
Till our next social visit Doc. Till then.