So once again I think I spoke too soon in the last blog. I said that this chemo round was easier. In a way, it's true--I have been sleeping, so that is a huge improvement. But this time I feel like it hit me like a truck, starting on Saturday. I was so shaky and weak that I was having trouble feeding Augie his lunch. Yesterday I was so tired I fell asleep around 10 am and couldn't get out of bed until after noon, even though I was technically awake.
I haven't been a total recluse. We had a bunch of company on Saturday, including friends whom I haven't seen since months b.c. (before cancer). Kudos to them for not even flinching at my baldness. I went to a kids' birthday party yesterday, and I did wear a wig in order to appease Lenny. I hadn't put one on since last Tuesday, and it felt hot and annoying to me. Today when I walked her to school I just wore a scarf. It's hard to balance the desire to make things easier for my child with the need to make things easier for myself. She wants me to be normal, to look normal, but the thing is, right now I'm not. It can be tiring to pretend. So it's possible that I spent a hell of a lot of money on wigs for nothing, but I need to know that blending in is possible, if I need it, I guess. And I've still got the stubble, so I can rock this edgy look a little while longer and strangers could believe I did it on purpose.
So I have left the house, and I have continued to take walks and try to get some exercise. But damn. Chemo #2 is kicking my ass. I think a lot of this fatigue for me has to do with my problems eating. I am just never hungry. Food--one of my favorite things in life!--has just lost its appeal. I know I need to eat to maintain strength and build up my immunity, but man, is it hard. My mouth and throat are so dry, I have terrible heartburn, I am definitely constipated this time, I feel nauseous and my stomach hurts. Just a few weeks ago I was that girl who was already thinking about lunch at 9:30 in the morning. I would have dreams about Sunday breakfasts. I loved to bake, right? Now I can't even be on the same floor as my family when they're microwaving lasagna for dinner because the smell makes me want to vomit. If I drink water, I feel so full I want to lie down. It's pathetic.
So food has kind of taken over my life here. What should I eat? When? How can I drink all of this water when that fills me up and then I don't want to eat anything? If I choose to eat rather than drink, how can I avoid being dehydrated? When will this metallic taste in my mouth go away?
Why the hell am I doing chemo again?
My consumption patterns are laughable. Last night all I wanted was some frosted flakes. Now I don't even normally LIKE frosted flakes. Who knows why I wanted that. But I knew that wasn't the best nutrition for me, so what did I eat first? A bowl of fresh spinach. Spinach and frosted flakes for dinner. Why not? I eat pudding and ice cream for calories, but I'm sure that doesn't help the constipation problem.
I will be astounded if anyone actually wants to read this blog, but I'm putting it out there because it's worth saying how fast chemo takes over your body. It hasn't even been three weeks and I feel like a totally different person--a sick person. When I had cancer in my body I could still do everything normally. Now the cancer's out and I'm getting this "just in case" medicine and I can barely sit here to write.
During chemo, there was a little party going on in my room last week. In addition to a social worker (who actually was useful as she brought some age-appropriate activity books for Lenny to explore her feelings about my cancer), two dieticians came to visit me. They were concerned that I'd lost almost 5 pounds in a week and were trying to tell me that my diet was ok (fruit, cereal, hummus, rice, peanut butter) but that I need more calories. Apparently it's bad to lose weight on chemo. Well, maybe once this menopause kicks in I'll start gaining! Hell if I know.
They were less worried about me when they found out I had diarrhea--so that's why you lost weight! Well, what's my excuse now? I was depressed to see myself weighing 112 this morning, after eating breakfast. It's funny--I thought it was great to see how the numbers on the scale went down after Augie was born. Even after I had stopped trying to lose weight, it was kind of fun to see myself down to 118, a weight I hadn't been since a teenager probably. I stayed at that weight for months, including after my diagnosis--except for the first few weeks when I dropped a couple of pounds due to the extreme stress of thinking I would die. I gained it back, and started out chemo at that weight. Skinny, but I felt fine. However, this is too much. I mean, I'm going to be 35 years old! I have two kids! I'm not short! I need to get a little more meat on me somehow, especially now that I'm bald--I really will start looking like a boy. Feel free to disagree with me on that if you've seen me lately, but I'm sure feeling that way. When I was a kid and I went through an extreme tomboy phase, I tried so hard to look like a boy, and it didn't really work. Enter chemo! Sigh.
Plus, even if I look like a boy, I need to get through chemo, right? I need to have some energy and stay out of the hospital. I hate feeling like I can't be a decent mom, a normal wife, a reliable co-worker. I'm afraid I'll drop Augie since I'm so shaky. I can't eat dinner with my family half the time due to my smell-aversions. I'm working from home today because I didn't know if I would make it to the train. Affection between me and Gabe consists of a few kisses and maybe spooning for 10 minutes. It's hard to have prolonged conversations.
And worst of all I've turned into such a complainer! I don't like reading back on this litany of chemo complaints, but it's better than keeping them all in my head I suppose. This is the one time when the words "strength" and "courage" mean anything to me. I'm not alone in feeling that those words are meaningless when you have a cancer diagnosis. You aren't given lots of choices, so your pluck is kind of irrelevant. As I've said before, attitude isn't what saves people, because if it was, a lot of amazing people would still be around who aren't.
However, it never occurred to me what strength and maybe stubbornness are involved in actually going through cancer treatment. If I actually show up for the rest of my a/c treatments, that's courage. Or stupidity, or something. Because it is damn hard to make yourself do that. And then, I will need to start a whole new type of chemo, with a whole host of different side effects, once I'm done. And THEN I'll do radiation. I just keep thinking: 85% chance of no recurrence due to successful surgery. Chemo only brings it up 10%, radiation 4% or something. All together it puts me close to normal, but I have to lose so much normal to get there, that the only way to do it is to just close your mind to the reality of what you're doing to yourself and just go. Because someone told you that was your only option. Because you want to live more badly than you want to live well. And for me, because once 2010 is over, I will have the chance to probably live like a normal person, albeit with fear, and some lingering side effects, and the memory of the things that cancer took from me. It is amazing to me to think about the people who go through this knowing their cancer will not go away, who do this for palliative reasons. That is some strength I don't think I have. If I do, I would really, really, rather never find out.
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Ok, I am going to get way too deep here. I want to hear about how hard it is. I want to know what you're going through. I can't share it any other way and I need to share it. I don't know what normal is going to mean for you in 6 months or 12 months or 5 years or 10 years. I do imagine, as you have said, that it can't possibly be the same normal that was and that breaks my heart. But I definitely don't want a memory of what cancer took from me so please struggle through it. I can bear these postings. I can't bear even a remote alternative.
ReplyDeleteLove,
Mom
I wouldn't call this "deep." In fact, this isn't even a blog comment. We just happened to be talking about the "food blog" when our call was cut off this afternoon, so I thought this would be a good place to say, "How have things been going since we talked?" I take it your cell lost reception....I waited around to see if you'd be able to call back. The phone up here seems okay. Anyway, give me a call again when you can. Hope you are feeling better and hope you are sleeping as I type these words!
ReplyDelete"Feel free to disagree with me on that if you've seen me lately, but I'm sure feeling that way."
ReplyDeleteSo, I would probably be inclined, no matter what, to disagree with your claims that you look like a boy, just in the hopes that it might help make you FEEL sexy and beautiful.
But the fact of the matter is that you don't even remotely look like a boy, my dear! Certainly not in that sweet pink dress! But also not the day I saw you, the morning after you shaved your head, when you were sporting nothing fancier than some short army green shorts and a tight tank. The tank was styled as a “boy tank” … but you sure as hell didn’t look like a boy! You were beautiful. It’s true, you were rocking a buzz cut, and you looked like you should be walking down the street in Brooklyn, edgy and hip. But I know – yes, I KNOW – that you will look just as beautiful when you’re sporting a shiny bald head and not a shaved head. While you’re lucky to have a well-shaped head (never thought I’d say that!), and while you have worked hard for your healthy and beautiful body (and I DO mean healthy, despite…), at the end of the day those aren’t really the reasons why I think you look so damn beautiful with a bald head. It’s something about your attitude, something about how confident you look, how natural it feels on you. I know how much it pained you to lose that gorgeous hair; what’s so incredible to me is to see and feel how little you actually “needed” that hair to make you gorgeous. (In fact, I think the hair brought so much attention from perfect strangers not so much on its own accord but because YOU made it so gorgeous.) Your beauty – with long red hair or with a bald head – has so much to do with how comfortable you are with yourself and your body. So, you can put on lovely pink dresses and you’ll sure look beautiful and sexy and womanly! No doubt! Or you can put on your shorts and a tank and you’ll look just as beautiful and sexy and womanly! Also no doubt. It’s just true – at least to me!
By the way, the wig you wore out when we were together really did look great, too. It felt very much like you, just shorter and straighter than usual, like you got a new haircut. You mentioned feeling bad about buying those wigs and maybe not wearing them much. So what! How could you ever possibly imagine or predict what you would want or need in this process – you couldn’t know until you were actually there. And maybe not even now, when you are in it, is it entirely clear, eh?!?!
Katy dearest, I hope the eating and sleeping are on the up. And I wish I were closer and that we could go out to eat breakfast in the middle of the afternoon more often! It was wonderful to be with you.
I love you, K
Kai, your comment really does mean a lot to me--you'll see that when you read the newest blog. I'm out of words right now, but I just wanted to tell you that--it means a lot.
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