Sunday, May 30, 2010

Day 25

Yesterday was my son's first birthday. We celebrated with just ourselves and my mom in the beautiful north woods of Wisconsin. I made a cake, and he actually ate some of it--not sure that was a good idea, but at least the entire piece didn't end up on the floor. It's been a perfect weekend, weather-wise: in the eighties, sunny, breezy. We've gone to the beach on little Bear Lake 4 times and only had to share with anyone else once. We've gone out in the paddle boat, taken walks, taught Lenny how to hit a baseball that's not on a tee, eaten some good food and opened presents. I had to stop the car in the middle of the road and wait for a black bear to pass. Lenny watched as a big snapping turtle laid eggs in the grass in front of the house. Gabe just geeked out trying to get a video of the huge pheasant that flew into a tree right before us. We've seen loons, geese, deer, rabbits, chipmunks, enormous crayfish--and Lenny is finally old enough to get how interesting these things are. Yesterday, a bald eagle flew directly above my head and started circling while I was out on one of my solitary walks. I've never been so close to an eagle, and I know how big their wings are, but I wasn't really prepared for what that looked like up close.

Augie has started cruising around, after not seeming interested in crawling much at all. He's standing by himself, going crazy, sneaking himself into corners and under tables and any other place he shouldn't go, staying up all hours of the night just to play (remember when you offered to babysit? who wants an overnighter?), floating in his inner tube in the beach. I'm so happy to see him do all these things, and so wistful too. I know he'll never remember this birthday. Assuming I kick this thing, maybe it's a blessing. Who wants to remember his mom turning away at intervals with tears in her eyes on his first birthday? But since I am a mom, I worry about that thing I'm not supposed to mention. What if he doesn't remember me at all? And how many birthdays will I see?

It's been a wonderful weekend. I'm glad we did it, but there's this weird sense with everything, like cancer means you should feel grateful just for the fact of the earth. Should I enjoy this weekend more because I have cancer? If so, why? Because I might not see many more like it? Or because it's better than going to work right before all the bad stuff begins?You know, I've always loved these times up here, and I was looking forward to Augie's first birthday long before I knew I had breast cancer. He is probably my last kid, cancer or no, and I've known that for a while. I've always been pretty content with my lot, and appreciative of the good things I've got going on--cancer doesn't change that, it just brings this tinge of the macabre to the occasion.

It's not clear to me why there's this urge to live it up after you learn such a thing as I've learned. I don't think that wisdom and serenity come over you just weeks after a diagnosis. We have such a fascination with this question as a society. What would you do if you found out you had X amount of time to live? But it is very rare for any doctor to tell any patient what that prognosis is. That doesn't stop Hollywood and the New York Times bestseller list from focusing on these end-of-life blow-outs and existential questions about what to focus on, what the priorities ought to be.

And yet when I worry about the things that are to come, people say "just be glad you found it early" or "be glad for what you have." Well, yes. Clearly. I just don't think that cancer patients should have such low expectations that we should just be happy to be here. A month ago, I felt the best I ever have, I looked good, I had tons of energy. Wait--all those things are still true. Except for the cancer. I know there's a lot to get through, just physically, in the next year. I will probably be so focused on that that this blog will sit stagnant for long periods of time. I might not even be able to type after the surgery on Friday, since they're doing the sentinel node biopsy and that could do a number on my ability to move my arm. But I am going to really grill that oncologist on June 14 (Gabe gets to spend his 35th birthday with me finding out my chemo and radiation schedules) to try to ensure that whatever I have to do, it lessens the long-term effects that chemo could have on me. I might not be able to do much about it at all. But if they're trying to help me live a normal life span, they need to realize that I am only 34, so that would be a long time. I want to enjoy life as long as I'm living it.

I realize now that's why I've been so focused on and scared of chemo. It's as if I've already moved past the surgery, which is unwise since it could be much worse than I expect. I am also just ignoring that part about finding out whether it's spread to my lymph nodes, because I can't do anything about that and I have to do chemo regardless. The surgery will be temporary pain, even if it's bad, even if temporary lasts a while. I know. I've done that sort of thing before. But I am also all too aware of the long-term effects medication can have on a person. And this is some serious, kill your cells medicine. I don't want neuropathy, or liver damage, sexual dysfunction or uncontrolled weight gain. For some of these things, being a woman is a definite negative. Doctors assume that when you talk about things like not wanting to gain weight or wanting a normal sex life, you are worried about your husband or partner, especially if he happens to be young. Sorry, honey, but no. I'm not worried about you or whether you're attracted to me. I'm worried about myself, and how those things will affect ME. Cancer card again--self centerdness! Medical community--listen up. If I say I'm concerned about something, don't tell me it's temporary, it will grow back, I will be beautiful anyway, my husband will understand. Just answer the damn question--I have my reasons for asking.

Can I put a plug in here for something people could do, especially those who are far away? Most of the followers of this blog, here and on facebook, are of a certain age where you all remember making mix tapes. I still have many of the tapes people made for me in high school and college. How about some mix cds for me to listen to while I'm in chemo? From what I understand from talking to other triple negative women, I'm looking at probably 16-20 chemo sessions over 5-6 months. I would get a kick out of hearing some good tunes from good friends during that long, long time.

Other than that, there's not much more to report on the cancer front yet. I'm still scared shitless, still not sleeping well, but I don't cry too much anymore. I can't believe I'm going to start the real cancer fight in just a few days. But in some ways, it's not soon enough. So the question is, what would you do if you found out you had cancer? Well, you would work, and go on vacation, argue with people, watch tv, go swimming, write a blog, talk about depressing things, laugh, take pictures, watch the days tick by as your kids get a little older, and hope that bald eagle was trying to tell you something.

Oh wait--that's what I would do. I would encourage you not to try to answer that question about what you would do, because it's kind of stupid. Even the trivial parts of life are your life, and are worth paying attention to--it's all going to change anyway so why speed up the process trying to squeeze something else out? Augie seems to have it figured out. Just stay up all day, so you don't miss anything good.


  1. hey you, i'm sitting here w/ parker. so i told him lenny got to see the turtle laying eggs in the beach, and he says he wants to drive there after lunch.

    in the event of cancer OR winning the lottery, my response would be the same; work less. that probably means i should work less w/o waiting for good or bad news to come, huh?

    happy first bday, augie!

  2. Girl, there were three different turtles at the house in a span of two days--and two of them laid eggs right next to each other. I don't know what that signifies, but it was neat to watch.

  3. Katy, I'm working on a mix for you right now. Maybe even two. Perhaps a relaxing, sweet one for quiet days and a rocking out one for when you need a laugh and burst of get-up-and-go?

    Happy birthday to Augie. I can't believe it's already been a year!


  4. Just deciphered the Patient status board on the wall at Prentice Women's Hospital after giving my wife one last smooch. JA..B,K was checked into Preop at 10:42, into the OR at 11:29. Should be an hour and a half or so, she's under general anaethesia right now so she'll have about 3 hours recovery afterwards. We should be headed home just in time for peak rush hour... but since she hasn't eaten anything or had anything to drink maybe she's gonna be hungry and thirsty when the damned spots are out!

  5. There's a symbol on this patient status board... it looks like stitches. When Luke arrived we didn't know what it meant. However, it now next to Katy's name.

    Occasionally hospital staff come into the family waiting room and shout out a number. They seem surly, and they're usually gone before I can catch them... but I don't have a number. Katy's surgeon said she would come get me as soon as she's done. She's very professional and I have the utmost confidence in her.

    Here's hoping that those stitches symbol mean that they're finishing up.

  6. I don't want to steal Katy's thunder but some of you may not be able to wait longer - she's getting stitched up and the news is as good as it can be. I'll leave it at that.

  7. Getting the car to head home now... Katy'll be wheeled out in a few minutes with Luke bringing the bags. We'd planned for an overnight!

  8. Thank you so much for the updates, Gabe!

    Katy, my dear, we're thinking of you. So wish I could give you a (very gentle) hug and help you all out right now. Glad your family is there with you.

    Love, Kairos