Saturday, November 13, 2010

Day 191

It's been almost 200 days; I guess it's fair to say I'm still plugging along. I've finished 14 radiation treatments, and my skin looks no different than before, at least not to me. I know it's early, but the nurses seem to think it won't be too bad for me if I keep following the instructions. All that means is that I need to slather myself with aquaphor two or three times a day, all over the left side of my chest. This is obviously not a difficult thing to do, but let me tell you, I have already ruined a lot of clothes. That stuff is a nightmare of goopiness, and it doesn't come off in the wash. On the other hand, I didn't even have to buy any at the store--we have several containers at home, since that's what we've always used for the kids' diaper rashes.

I can't decide if cancer treatment is meant to infantilize you or make you feel old. Right now, it's a strange mixture of both for me. Diaper cream, baby chick head, loss of most of my other hair. Menopause, exhaustion. Some people treat me like I'm a fragile little thing, others like I'm two steps from death's door. Luckily, I've found that many people are capable of treating me normally, even if it becomes obvious that it takes some effort for them to do so.

I've been trying to go out in the world a bit more, since I spend so much time by myself at home. I thought I would be bored at home, since the only time I've ever had off of work since the age of 12 or so was during my two maternity leaves. It's impossible to be bored with a newborn in my opinion, especially when you're nursing. You turn around and the day is over, and you haven't even changed out of your pjs. Since I'm still sending the kids to daycare most days, I thought I would have all this time. What the hell happened? I cook all the time now, do laundry, run errands, and generally act more like a regular housewife than a cancer patient. I have been prioritizing some me stuff--I've started doing a pilates class once a week and will be doing personal pilates training with a friend once a week as well. I lift weights at home, and I still take my walks--we've had an extraordinary fall here, 70 degrees this week, and I've made sure to spend some time outside. These pictures are from Thursday, when we went to Lincoln Park zoo on a ridiculously gorgeous Veteran's day.

But where do the days go? They've been much more efficient at radiation, so I don't even have time to read the paper there. In fact, I figured out that the woman before me is always late, so I get there extra early, before her, and they take me back right away. She sees me on the way out sometimes and asks me incredulously if I'm already finished. How is it possible to be late to something every single day? I don't get it. This cancer treatment, it's your job. You have control over nothing so you might as well show up and get it done.

So I've been reading cookbooks for the most part and I've been fattening up a bit as a result. Gabe is probably happy about this, but not me. I'm a little obsessed with staying in the best shape that I can, since I'm convinced that I would be much closer to death's door if I'd weighed a little more and never found that cancer. But it's still hard to resist my own brownies, or my breaded tilapia or homemade meatballs or any of the other things I didn't have the energy to make or the desire to eat for so many months. Since I have failed to do so personally--and I will, I promise--I did want to take this opportunity to sincerely thank everyone who cooked for us during my four months of chemo. That was such a huge help, especially during the three months when I was working. I don't really know the best way to thank people, since I hope I will never have to pay anyone back in the same way. So until I figure out something better, just know that we greatly appreciated your generosity. Gabe still gets choked up every time we talk about it.

In addition to eating and exercising, I've been taking advantage of this spa Wednesday that the local hospital offers to cancer patients. It's called Faye's Light, and is funded by a special grant. It's really a cool program. I have received a few free massages, a free manicure, and I tried reiki for the first time for free. That wasn't for me, but the massages have been great. I have a few pedicures scheduled as well as a few more manicures and massages. Apparently the woman who started this foundation remembered how much her mother appreciated her doing her nails when she was in cancer treatment. Most of the time, when you have cancer, you are experiencing what we tell our kids is "bad touch." People poking and prodding you, sticking needles in you, poisoning you. What's especially sad is that for a lot of people, that's the only touch they get. I see some of these people at radiation. They are old, and they chat up the nurses because I think they have no one else to talk to, no other human contact. At the spa, I've never seen a man waiting for a treatment. I think that's really too bad--free massage is good for everyone, especially people who have gone through all the crap we have!

So I can add that to the list of things to be grateful for, even though I don't feel any pressure to develop such a list. I have had a lot of affection and love for someone going through cancer. Unfortunately, a cancer diagnosis can take that from you. But I am in a loving marriage and my kids still like me, even though Augie is often more likely to whack me than hug me, because he is just crazy. And I have recovered fairly well from chemo, except for these hot flashes which are driving me to distraction. I need to find something that works on them--acupuncture does nothing, and there's not a whole hell of a lot I can take. It is a really miserable situation and yet--it's the only thing I can see as lasting from chemo, outside of my strange looking hair. And don't get me wrong, it's a big thing, this killing of my ovaries. They didn't deserve to die, you know? What the hell did they do to anyone? But if I didn't have terrible hot flashes, I think I could deal with menopause, though it does make me sad.

I don't get sad that often, but sometimes things hit me. Yesterday I was thinking about this couple whose wedding we attended years ago. They came to our wedding as well; we were friends, and I worked with the woman. She had a teenage daughter who was her whole world. Now she is gone, and so is her husband. He was young and healthy and died relatively quickly from stomach cancer. She died very unexpectedly a short time later, of natural causes, though I think she was maybe 37 at the time and there was nothing obviously wrong with her at all. I think her daughter is in college now, and I know she would be so proud. I was crying quite a bit thinking about this yesterday. Crying to think that neither of them is here anymore, crying because her daughter had so much loss, crying to think about how much has changed in just six short years, for how much in life is unforeseen, but also crying for selfish reasons, because I know she would have wanted to see her daughter graduate high school and I really want that too. Crying also because it made me angry to think about all the folks who talk about being positive, having faith, fighting. They both had all of that. Cancer just took him so quickly, and made him suffer so much; it also was so so hard on her. No young person could ever see that coming.

I wonder sometimes if that's what's in store for me, that suffering and death, but I also wonder what kind of justice it is if it's not. What makes me different? Why do some people get lucky? There's just no good answer. I hope that when this treatment is over, it's really over. I hope I can be like Gabe one day and say that I "had cancer." But these next three years will be harrowing. It's not until then that I can stop holding my breath, being a triple negative, with a high chance of recurrence or God forbid metastisis in those years. Can I just speed up time and get to that magical three year point? If I could, I guess I wouldn't, because I would miss out on a lot with my kids.

The other day I met another cancer survivor, right after pilates class. She asked me if I was going through cancer treatment. It's so interesting that only other people who have gone through it will just straight up ask you when they see the evidence on your head. We got into a long conversation. She was diagnosed at 40, 6 years ago, so I told her she should be good. Triple negative, BRCA positive, double mastectomy and ovaries removed. At one point she said, I have had everything taken from me that made me who I thought I was, and now I feel like I really know who I am. She said that at the same time, cancer has made her insecure, and she hates that, though it's good to be here to admit to it. I wondered if insecure is the right word. You can't be too insecure if you're out in public talking about your breast implants and how you think they look fake. You can't be too insecure if you point to another bald woman's head and say, yeah, I only wore my wig once. You aren't too insecure if you give this total stranger your number and tell her to call you. Haunted, maybe, still waiting for the other shoe to drop, but not insecure.

So I think I will call her. This is the second time in my adult life that a woman, a total stranger, has given me her number. The other time was years ago on the El, when a woman I talked to on the morning commute gave me her number and told me to call her if I ever wanted to go shopping or go to lunch. Maybe six years later, when I was pregnant with Lenny, I stood up in that woman's wedding. Having cancer makes me wonder why this doesn't happen more often. Why do we have so many walls up, especially we women? What is there to lose? It's as if we only learned how to reach out to strangers if they are good looking men. And then we learn that doesn't work out too well, so we don't do it at all. I think this is going to be my new year's resolution. All those friendly people in the gym at work, at water aerobics, on the train? You'd better watch out. You might be hearing from me. In the meantime, if you already have my number, feel free to give me a call. I'm in more of a talking mood these days. To some extent, cancer encourages you to focus on what is really important and let the rest go, though it is hard to do that on a day to day basis. On that note, nice work, Northwestern!


  1. It took me a second reading of your blog to realize that you were referring to the football team beating Iowa 21-17 and not expressing gratitude to NMH for the mutilation you've endured... although I hope that some day many years from now you will be able to look back and say that it was an intentional double-entendre.

  2. Katy dearest,

    Sorry I've been so quiet lately! Still - always - reading regularly and thinking of you all the time.

    Did you see this NY Times magazine piece this morning?!?! "Thinking about pink - What message are girls really getting from breast-cancer activism?" I think you'll appreciate the sentiment.

    Let's talk soon! I miss you.
    Love, Kairos

  3. Great article, Kai! I heartily agree, especially with this part:

    "I hate to be a buzz kill, but breast cancer is just not sexy. It’s not ennobling. It’s not a feminine rite of passage. And, though it pains me to say it, it’s also not very much fun."

    Save the ta-tas indeed. I still have my breasts, but I also still have cancer, and menopause, and I'm bald and don't know how long I'll live. Moreover, no one has any friggin clue what triple negative breast cancer is, awareness or no. And last I think we should stop "celebrating" breast cancer awareness month until we can at least make a dent in the death rate.

    OK rant over. At least I can still make an awesome dinner, evidenced by my complete food coma. Must. Watch. Football.

  4. It does suck. I guess for now one of the most important sources of real information about breast cancer may come from cancer patients telling their real stories. These stories are spreading, believe me, despite all the hype to the contrary.

    By the way, next time I come into town (maybe Easter?) I want some brownies.