Sunday, July 4, 2010
On this Independence Day, I've been granted enough private time with two sleeping children to write what will probably be my last pre-chemo blog. I passed my MUGA with flying colors and was told my heart is very healthy, so "I'm good to go." Good to go and get rid of that health I've been so blessed with lately! I have almost gotten to the point of deciding to bail on chemo. I won't, but it's really hard to subject yourself to something like that on purpose when you're a stage one case like me. I still think about that 85% chance of perfect health if I do nothing. But then I think about my kids and I know I will do it. I might regret it, but I'll do it. First round July 7th--three more days.
I've had a few days between surgery and chemo where I've felt great--not as many as I thought I would have, but some. I think I mentioned before that I got this crazy allergic reaction to the antibiotic they gave me with my second operation. I had hives all over my torso, front and back, from my shoulders down to my hips. It happened a few days after surgery so when I called the on-call breast doctor he told me it was unlikely that I was having a delayed allergic reaction so maybe I should put some benadryl cream on it, and by the way, was I wearing a new bra? Um, you want me to put cream on half of my body? And when did you think I went bra shopping? On the way home from the hospital? Knowing me, I guess that was a possibility.
Anyway, I finally called my internist who happened to be on call at 5 last Sunday morning and she promptly told me it was an allergic reaction and prescribed a bunch of meds, including a steroid. I now have a glimpse into my reactions for the steroids I need to take for 4 days after each chemo session. It wasn't too bad--I had some insomnia, and I don't sleep well anyway, but more than that I had crazy dreams. It reminded me of being pregnant. These movie-scapes were taking place and people were always being murdered and they were pretty paranoid all around. As soon as I went off of them, I started dreaming Katy-style again: realistic dreams about going to chemo, getting assigned the student who couldn't place the IV, and arguing with the doctor. It's like hormones or medications give me a deep sub-conscience, or at least make me a little more interesting.
Some of these dreams have taken place while I have slept here in the north woods of wisconsin, as we decided to take one more mini-vacation this summer. Who knows when we will be back. We have had a great time. Augie is really walking now, Lenny is reading all the street signs, and I go days without crying. I've been reading a lot lately too. I was intrigued by an article in the Trib that had the news flash that men don't like to go to the doctor. Hmm. I could have told you that that's a big reason our life expectancy is still higher, even though we go through childbirth. Forget habits or destructive lifestyles. We probably live longer because we go to the doctor.
Some of you have heard me tell the story of the guy I dated who found out he had melanoma right around our third date. His sister and ex-wife convinced him to go to the doctor. He showed me this huge scar on his arm, and I said to him, well, what did you think that was, a second bicep? Not the best reaction, but it turns out this thing had grown for 15 years, and he just didn't want to get it checked out. I think he is doing well now, and I am really glad for that, because he was just about the nicest guy. But I guess the point is this: Every woman I know who has had breast cancer, except two, found it herself--and went in to get it checked out pretty much right away.
This article discussed how men are afraid of being labeled as sick, since that will make people think less of them. I found that interesting, since that is one thing that has never concerned me about cancer, or epilepsy, or anything else. I don't worry that people will find me incompetent or think of me as less of a human being. That just seems stupid, even if it's true. The article also said that many men have such a fear of taking medication due to the potential of even temporary impotence that they refuse to find out if they need medication. To which the doctors in the article replied, but we can make sure that doesn't happen! There are a lot of treatments!
And then I got pissed off. Where are the doctors saying, well, it's not that big of a deal, get over it. It's temporary. Your sexual prowess will come back. Get a toy for your wife. No, none of that. But women are told this about so many things in the medical world, every single day. Things like, they're just breasts. Your hair will grow back. You might regain your ovarian function and if not, you don't have to deal with your period, so aren't you happy about that? Chemo can render men temporarily impotent, and can have the same effect on women, though we call it something else--in fact, we don't really call it anything, do we? As if it's not important. But due to the nature of women's hormones, all kinds of other things can happen that wouldn't happen to men: weight gain, osteoporosis, hot flashes, an increased risk of ovarian cancer. These changes are sometimes permanent.
I know I've written about this before, but here's what gets me: where's the research to counteract this effect? Doctors often tell women who gain weight on chemo that they shouldn't worry about it, that they have bigger problems. Really? Because more than one doctor has told me that if I hadn't lost so much weight--when I wasn't even overweight in the first place--I would have had a cancer that very well might have killed me, because I never would have found it. You think I'm not going to be damn focused on staying skinny the rest of my life, if only to spare myself the paranoia associated with not being able to feel everything going on in my breasts? You can't have it both ways. Either it's important, or it's not. And I guess I'm just saying, to any man who might read this, don't be a jackass and waste this opportunity. The medical community has spent a hell of a lot of money researching you, even though you might not take them up on it. Maybe some more research dollars should be spent on the half of the population who would actually go to the doctor, do what they're told without complaining, and live a long time. In the meantime, take a page out of our book and just GO.
Now men, you know I love you. I just need to give a shout out to my sisters who suffer for the discrimination in medicine. It's not just cancer--neurological conditions, heart disease, you name it. I've read recently that women have been working themselves too hard in the gym for years, because the heart rate guidelines for appropriate exercise were all designed for men. This stuff makes me angry.
And that brings me to the second rambling train of thought for today's blog--so-called negative emotions, like anger and sadness. I am two months into my cancer diagnosis. Some things have gotten better--as I said, I don't cry as much. I don't wake up in the middle of the night lurching, unable to breathe, terrified. I'm not always thinking about death. I'm not pissed off all the time that I have another thing to recover from, another medical-ailment-notch on my belt. Now that I'm through surgery, I no longer imagine every woman I see without her breasts, or with only the one.
But some things are the same. I still imagine every single person I see bald. Yes, that includes you, if I've seen you recently. And let me tell you, no one really looks better for it. The comfort is in realizing that people are still recognizable. I don't feel like a creep about this anymore. It seems normal enough given the circumstances. I also still cry or feel my heart drop when I see things or am reminded about things related to kids growing up. I'm still afraid I won't live to see that, though it's not the all-consuming fear it was before my first surgery when I didn't know what I was facing, what stage I was, whether this thing had spread.
Some things have gotten worse. I have a dread of chemo that follows me like a raincloud. I have this palpable fear of change, and it makes sense because I'm facing a very specific set of changes that are still unknown to me but that will definitely start in three days. This is a weird conundrum. Change that you know about, can predict to the day, though you can't predict the extent of it or what it will mean.
I remember in college when I studied sociology and we read the Durkheim Suicide study. I was fascinated by the notion that what drives many people to suicide is change--good or bad (and that social ties keep you alive). Later studies showed that suicide rates were equal in boom times and in busts. Now, I'm nowhere near suicidal. But here's why I'm thinking about this. Very few people would try to argue that the changes that cancer or chemo bring are good--they are, by nature, bad. People try to compensate for the negative by discussing how you appreciate things more later. And except for folks who haven't done it and for doctors (who haven't done it either), no one who has gone through chemo has told me I'll be "fine." The specific phrases include: It's doable. It's not THAT bad. I didn't miss too much work. I got through it. They try to make you as comfortable as possible. I never threw up. At least I didn't have to shave my legs. I could tell you about a great wig place. Chemobrain has its advantages. Let me know if you need anything.
And it's these phrases that have helped me in thinking about this. One of the hardest things, as I've mentioned, is the notion that one should be chipper through cancer. Now I am not saying that most people in my life have told me to change my response--I have actually felt more positive because of the love I've seen coming from other people, including some I don't know that well. But this experience has taught me something that is larger than cancer, and that is that we seem to want to narrow the range of human emotions to but a few. Moxie is good: be strong! Have courage! Fight! And positivity is good: have a good attitude! think about the good things! Humor is good. Laugh a lot!
Emotions don't end there though. And it has been hard for me to imagine, that if cancer doesn't give you a reason to explore your own sadness, grief, fear, and yes, even depression, than what does, outside of death? We seem to know enough as a society to not say, well, he's in a better place when someone dies. It's better to say I'm sorry, and acknowledge the pain. It is, perhaps, better to feel that pain. I have wanted to feel it, which is not to say I have wanted this to happen. But I want to deal with the bad, so I can wrap my mind around what's left.
Because cancer is just not good. Getting hit by a car and wondering if I would ever walk again was not good. As an adult, or a teenager writing an essay for college applications, I could say that it was the best thing that ever happened to me. But that wasn't true. The most formative, perhaps. But not the best. It is, after all, the reason I haven't had a good night's sleep in 25 years. This arthritis that makes me turn over every hour took away that ability to sleep like a log. It also makes it easier for me to hear my kids at night. So not terrible, but not better. Just different.
So it is with cancer. The new normal, they call it when they are trying to help cancer survivors think about their lives after treatment. You are still yourself, albeit somewhat different. It's worth being sad about that, being scared of the unknown. How will I ever get to the new normal if I don't know what the bad times felt like? How could I appreciate three days without crying--me, the non-cryer--if I hadn't cried on the hour for two weeks? How could I possibly like my buzzed hair--me, with the beautiful long hair--if I hadn't been so depressed about being bald? How could I acknowledge that little things have started to bug me again if I hadn't learned what the little things were in the first place?
None of which makes it worth it--let's not lie. There are words behind the words of the breast cancer survivors I've quoted. Those words are: I suffered. It was awful. I hated being bald. I was scared. I wasn't sure I could work. It knocked me on my ass. I don't remember things anymore. But because the words were coming from beautiful people, standing up and looking at me, functioning and even helping me, I could process it in some kind of real way. And now even I can see something different in this blog than a few weeks ago. I can imagine trying to reconcile my old and new lives after cancer treatment. I can imagine "after."
I told Gabe a while ago that I've started thinking of myself as a cancer survivor and a chemo patient. I survived cancer already--for years. It didn't slow me down. I'm past the cancer part, because I am, as far as everyone knows, cancer-free. The sickness part, the part where I'm a "patient," that's all going to be due to chemo and radiation from here on out. And I would love to give the sadness back, the fear, the grief, and most of all--the change. I would love to have that old normal back. I can't though, so I need to feel all of these things, and write about them, so I can remember. I mean, who is that couple on Lake Lucerne? That's me, right? Me, with the jagged long scar on her left breast, the weird chemo dreams, with a full head of hair, satisfied from a good meal, on a beautiful day on the water. That is what it was like, I will tell myself. It was bad but it was good, the way most things are.