Tuesday, August 10, 2010

Day 97

It's interesting for me to read back on old blogs and see what kinds of things I was worried about with chemo. Some of it seems so quaint! Worrying about losing my memory, my sexual function, gaining weight. I have finished three cycles of a/c, and have one to go. Some things have gotten better with time--my nausea and appetite were much better this cycle, and while I got down to 111, I have gained back to about 114 and I think some of my weight issues are due to muscle loss anyway. I have been sleeping ok except for the few nights after chemo, even though I get up several times a night.

But this weakness and fatigue is just knocking me on my ass. It's so hard to hear about what a strong person I am to go through this, because it reminds me that I should be stronger than this. I should be the one who goes through chemo relatively unscathed. I'm the girl with biceps, the one who can do more situps than my skinny husband. I'm the one who was a few weeks away from giving birth, and I was in the gym three times a week, walking an hour every day AND doing water aerobics. I was as big as a house and every time I took a sip of water I could hear myself sloshing from all the fluid I carried around. But I was up and at em a week after Augie was born, feeling great. I was exercising after two surgeries. But now, ever since Sunday, I have been feeling like a shaky little weakling. I've tried to take walks every day because that's supposed to help combat fatigue, but it's so damn hot that I couldn't do it today. I have gone to the gym only sporadically and I'm avoiding the pool due to germs. So I feel like a sloth--my muscles seem to be atrophying on a daily basis, I'm dizzy, and I'm dropping things. It's making me a little crazy.

Today I went to a little local Catholic hospital to check out their radiation department. I had heard good things about the head breast oncologist there, and this place is very close to my house, which is good since you have to go in every day for 6 1/2 weeks. The short story is that I liked it, the doctor seemed good, and I will probably end up doing that once it's time. The longer story is that while I was there they took my vitals and I got a raised eyebrow from the nurse when she took my blood pressure. Um, is your blood pressure always this low? Huh? What is it?


Holy shit. No wonder I feel like I'm going to pass out. I frantically called my chemo nurse who said that she thinks I'm probably just dehydrated. I have been drinking a lot of water and gatorade, but it is very dry in our non-central-air-conditioned house, so maybe that's a factor. I'm staying somewhere else tonight, away from my family, so that the stale a/c isn't blowing straight on my head. I had to take the day off, since I can't pretend to be productive. And tomorrow I will go to acupuncture, so maybe that will help. But I can't help but worry that my heart is giving out, due to the adriamycin. I've learned enough to know that I need to ask about the effects of radiation on my heart since my tumors were in the left breast, and a small bit of my heart will be exposed to radiation. I wish someone had told me that when I was making my chemo decision. Just think, I might make it through all this and then have a heart attack when I'm 45!

I know that sounds morbid, but cancer does that to a person. Physical weakness begets emotional weakness, especially when you're young and independent and used to being able to juggle a million things, like me. There is farther to fall when you're at the height of good health and it gets stripped away. So you do things like read the obituaries. I always liked the big stories in the obits, but now I read the little ones. It's not just out of curiosity for the interesting things people do with their lives. I end up thinking things like, well if I died from cancer at 60, that wouldn't be SO bad. Or, wow, I've already lived longer than that person. Or, I wonder if I will have any grandkids? How long will I be married?

Now don't get me wrong. I am not some morbidly depressed person all of a sudden. I have been exercising, as I said, and working, and doing what I can with the kids, and seeing friends and family. I am not a recluse. I actually think this obituary stuff, and the mind wandering to the unthinkable, is a totally normal reaction to having something like cancer--but again, you're not supposed to admit it. When you're having a conversation with your friends about some dumb movie and in the back of your mind you're planning your memorial service, you're never supposed to say that out loud.

To me, that two-track mind is just the mental version of the way that cancer physically represents itself. On the one hand, it's obvious that I have cancer, because, well--I'm bald. And I have scars on my breast and under my arm. Of course, few people see those (except for everyone who is reading this blog). But everything else that's going on--my weight struggle (which is very minor, considering), my blood pressure, weakness, insomnia, nausea and vomiting, hemorrhoids, photosensitivity, lack of sweat and tears, headaches, etc.--no one knows those things are there. That's the part of cancer/chemo that you just experience by yourself. As far as anyone else knows, I could be making these things up. (Apparently, someone has done that. A co-survivor posted a story on facebook about a woman who faked breast cancer, down to shaving her head and eyebrows, to get money out of some local families and charities.)

How about if I give fake-cancer lady just a few days of this "gift" to get a few days of her normal but for whatever reason unfulfilled life? Because outside of cancer, or more accurately chemo, I have a pretty fulfilling life thank you! I would rather not have the attention. I would happily give this whole damn thing back. It is so hard to feel like this when I felt so healthy just a little over a month ago. Chemo just cuts to the quick--I've almost forgotten about the issues that worried me before I started, because now I'm just focused on things like: can I see/focus enough to write this blog? Should I climb the stairs? Why can't I hear? What can I bear to eat?

And finally, how can I be a normal mom? Lenny in particular has really been having issues lately. She's been having meltdowns, trouble sleeping, waking up crying. She's making up symptoms--saying her stomach hurts, or her head hurts, and then forgetting about it. Now she's 4, so she's not like the fake breast cancer lady. But it's frustrating to me. I want to say "you're healthy! it's no fun being sick! stop pretending!" And yet I know she doesn't know why she's doing what she's doing. I know she's scared, and she's always talking about when I had hair. It's hard for me to comprehend how things have changed for her when I'm so focused on the changes I'm dealing with in my body.

So I guess this is just my place to vent about how we're pretty overwhelmed at our house. We're keeping it together, and I know that people have much harder situations than mine--some people do this as single parents, children have cancer, some people have no support. On the other hand this is my blog so I can only really talk about what I'm dealing with, even though I can recognize my comparative advantages.

For example, Augie is not just a handful, he is about 10 handfuls. He's a very happy kid, but he's busy, and rough, and he eats and poops constantly and can't communicate yet, which makes it hard. I will admit that I do a lot more with Lenny than I do with him, and maybe someday he will resent me for it. Lenny is freaking out right now, and I try to talk to her about it, but she just denies that she's worried. Or maybe she doesn't even know she is. I wish she was more oblivious, like some other 4 year olds. She knows exactly what's going on, and yet I don't think she knows how to process it. I am at a loss as to what to tell her, and I'm also at a loss as to how I try to have a regular mom relationship with my 14 month old when I am at risk of dropping him if I pick him up.

So instead of actually figuring it out, we look at pictures. See here? Look how happy you are! Look, daddy loves mommy's bald head. And finally, wait, don't look at that one, that one's for me, but that's what breast cancer looks like. No makeup, no hair, no clothes. And yet--it doesn't look so bad, does it? Like one day I might look back and say, that does look like me, stripped of some of the conventional adornments. This did really happen--it's not some sort of cosmic joke!


  1. I have to stand corrected on one thing. Not all of Lenny's issues are pretend--she has been throwing up today. I feel terrible that we thought it wasn't real, and I'm crossing my fingers that I can avoid catching it and ending up in the hospital!

  2. You look beautiful in all the pictures, Katy, because your spirit just pours out through your eyes and your smile. When life calms down for you, I would love to have you talk to my nursing staff about how we can be better advocates for our patients. Your blog is eloquent, insightful, and so emotional at times. Thank you for sharing some of your most intimate thoughts and experiences. How about a shout out to Aunt Karen? I love supportive families!

  3. Thanks Sue! I was going to wait for the shout out until we can post a picture of us together. Tell her she has no choice--I know you hate to have your picture taken Karen--too bad!!

  4. OOH!!! Great idea--I just don't know when we will get that pic! She is a tough customer when it comes to cameras but you're right-too bad!!! I would say you have some leverage here, Katy. She would do anything for you guys.

  5. I was just going to say how Lenny is learning about the fragility of health and it must be confusing, but then I saw your note of correction. Poor sweet thing. Hope she's better.