Thursday, July 29, 2010

Day 85: Shiny unhappy people

As a warning, if you are looking for a chipper cancer blog, this ain't it. This is a heavy one, and I will not be offended if that turns most people off from reading it. Don't worry, I will keep it together in the long run, but this is where I'm at right now and I need to get it out.

Back when I found out I needed a second surgery, I started my blog by saying that this is not the blog I expected to write today. Well, I'm back in the same boat. I was going to update on the many ridiculous things that chemo has brought into my life. On Monday, after I wrote last, my nausea was so bad that I gave in and tried the last anti-nausea medication they had given me back on July 7, which I had never used. Within 45 minutes of taking it I was vomiting uncontrollably. This was happening as Gabe and the kids were pulling into the driveway. I was going to write about how after chemo #2, I didn't eat hardly anything for almost a week and I got down to 110 pounds and was so weak from the lack of food that I couldn't stand it. About trying acupuncture again, this time for nausea and the extreme stomach pain I was feeling for days. About how all of my mucous is gone, everywhere, in my body. About how excited I was to be able to eat last night and today, and to see the scale get back to 113. About meeting with the radiation oncologist and finding out that I am not a candidate for a reduced radiation schedule because the one DCIS tumor that I have (stage 0 cancer) happens to be grade 3, unlike my other grade two tumors, so I will need to do the full 6 and a half weeks.

But I'm not going to write any more about any of those things tonight. I can start by saying that chemo has turned my body into a bone. I don't even have tears anymore. I was down and upset the other day and I started to cry, but very little happened, and not for lack of trying. Just a few drops. I thought it was some kind of metaphor until I realized it was just the extreme dryness brought on by chemo. I have never wanted a good cry so much in my life.

Until tonight.

I have just spent the last hour with my husband, having my little buzz shaved off for good. I really liked it for the two weeks that I had it, more than I expected. I felt comfortable going out in public with it. But I couldn't stand how it was coming out constantly, even while I was brushing my teeth, even while I was wearing a scarf. My head was hurting all the time with the little hairs pulling, making it hard to sleep. I was starting to look like I had mange. So Gabe got his new clipper set out and went to work. I just looked more ridiculously mangy and we both agreed that wasn't good. So then he got out the Barbasol and safety razor and started a long slow process of shaving my head smooth. I started to cry those dry tears and I'll admit I'm doing it even as I write. What kind of fucking medicine makes it so that you can't even really cry? Gabe is more of a cryer than me by a large magnitude, so that started him off as well. There we were in the bathroom, both crying, hair all over the floor, my hair all over his shirt. He said he never had a father to teach him to do this right (to which I wanted to say, do fathers and sons often shave each others' heads? but you know, I don't have an answer, being a girl), and even if he had, he never in a million years could have pictured himself doing this with me.

There's the whole in sickness and in health part of your marriage vows. But then there's standing in your basement bathroom with your wife wrapped in a towel, sitting on a stool, while you shave off all of what's left of what used to be her really pretty hair and then you take the expensive after shave that your mother in law gave you for christmas years ago and rub it all over her head, feeling guilty that you gave her razor burn. And you tell her that she looks sexy, though she knows that's a lie. Some might say that that is real love, or devotion. And I know that it is. But it is also a reminder of what marriage is not supposed to be at this age, or at any age. We should have been watching a movie together, having sex, arguing, cleaning the house. We should have been doing something else.

I feel like that's what it comes down to--I should be doing something else besides cancer with my time. I don't feel sorry for myself but it is just hitting me over the last few days what a colossal bunch of bullshit this is. And now how will I go out in public? How will I do what I've been doing and pretend to be a somewhat normal person? Maybe in a few days I won't feel so bad, who knows. This is the first time since I received my diagnosis that I have felt regret. And yet, I don't know what else we could have done. My damn stubborn hair was coming out, but SO slowly. It could have taken days, weeks, and I would have had that stinging pain all the time, reminding me, and I would have been left with less and less patchy fuzz. So maybe I should ask for another vote. Do I look so ridiculous that I can't go out in public like this, a totally bald woman who can't pass herself off as edgy anymore but is screaming, look I have cancer! Do I need to cover up? Because now there's no going back, not until the roots come in many months from now, so I need to know how to behave.

That's the other lesson of tonight I guess. There's no going back, not with any of this cancer shit. I've started chemo, wanted to stop, but why? Because I don't want to keep suffering for the next three months, but the poison's already in me, so what's the point in stopping? It would piss everyone off, make people worry about me, and leave me with no other options because of this damn triple negative thing. So on I'll go.

And there's no going back to how things were before, even with the kids. Augie turned 14 months old today and it's been breaking my heart now that I've had time to think about how things have changed with him. I stayed home with him for the first six months of his life, and I was pretty much his world. I was still nursing him often when I had to suddenly stop within a week of my diagnosis. I'll never forget his confusion when Gabe went in the second morning in a row to feed him his first bottle of the day. My one child who could actually nurse well! I had to pump all the time for Lenny--she wouldn't have known the difference if I stopped nursing. But fate doesn't care about those ironies. Augie still drinks a bottle better from me than anyone else, but it's not the same. And then there are the other things. After weaning I had two surgeries, which meant I couldn't pick him up for some span of days. And now I am so tired and weak--or at least I am for the week after each infusion, before I get a week's reprieve of feeling "better," that I can't chase him around, or I have days when I'm so shaky I can't pick him up. And now, the kid who calls his pacifier his Mama, reaches his arms up for Gabe to get him. He throws tantrums sometimes. I think he doesn't trust me. He loves me and he likes me, but he doesn't understand what's happened. I know he will never remember, but that's not the point. I will. I will always have that, the understanding of how cancer changed my relationship with my only son, my second and last child.

And then there's my daughter. What will Lenny say when she sees this head tomorrow? We were looking at a picture in her room, in a frame that says Mommy and me. I said we needed a new one because she's not even two in the picture. And she said, well, back then we didn't even know you had cancer. And you had long hair. Besides my shock at her saying "we didn't know you had" cancer (I probably did have it then--but how did she know that? shouldn't she have just said, back then you didn't have cancer?), I just wanted to cry again. How she wishes I was the way I used to be, or at least that I looked that way, as I do in the first photo you see here, taken just days after my diagnosis.

I think the image of me and Gabe in the bathroom sums up how some things have changed there. And things have changed with some of my friends, in good ways and bad. Some people are around less, and others have come out of the woodwork. I've heard stories of people I didn't know that well in high school finding out about me and sobbing. While that seems strange on one level, I get it. I know that this is really touching people who knew me as a kid, as a teenager, and it must be weird to think about someone you best remember as your childhood playmate, your junior high girlfriend, that testy girl in college, having cancer. Part of it is because you think, well shit, we really are all going to die, and part of it is that you think, well wasn't that just yesterday when we were 17?

And in a way, it was. But in another way, time just passes and passes. I'm just hoping I have a lot more of it to pass through, though in my darker moments like today I wonder. I wish time would speed up and get me through this cancer treatment but I know that won't happen, and even if it did that would just be more time I couldn't get back.

There are a few people in the world who will understand what I'm about to say. This whole cancer thing right now seems like the last two lines in Robert Creeley's Kitchen.

Perpetually sweeping this room,
I want it to be like it was.

Monday, July 26, 2010

Day 82: Food blog

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.

Saturday, July 24, 2010

Day 80

So it's been 80 days. That's not even three months. It feels like a year. The hard thing is when people say that chemo will only last three more months...and that seems like such a long time. By Halloween I will be done with chemo and on to radiation but at this point that's like talking about the next millennium or something.

I have to say that this chemo round was better. Not fun, but better. It didn't start out well. I waited an hour and a half to see the oncologist--usually you just see the nurse. At one point I went outside in my gown, untied, and said "hello!" I think they had forgotten about me. The doctor saw me for literally twenty seconds. He looked at me and said, so you're fine, right? I said well, not really...I didn't sleep for a week. He just looked at me blankly and said, but no major problems, right?

I had no idea what to say to that.

Apparently the only thing that matters to him is that my numbers were fine--white blood cells, etc. I did have one number that was slightly anemic, but they weren't too worried about me. So on to chemo I went. I have to say that even though I was annoyed at everyone's attempts to say I had random things wrong with me, I really, really like this nurse. She put that iv in there like it was nothing. For that alone, I want to keep going to her. No port! Plus, the adriamycin is so toxic that if it gets into your skin, it can necrotize. So you need a good person to push that into you (two huge syringes of red koolaid looking stuff--they push it right into the iv, no drip. another reason to not have a port--imagine having someone push that into your chest!) Also I think she felt really bad for me and for my sleep issue but just didn't know what to do.

I asked for a printout of the meds that went into my iv, and I'm really glad I did that. Before chemo, and on the two days after, I take this emend pill for nausea. $100 a pop! Then there are the two chemo drugs themselves, along with five other drugs in the iv. After chemo, you have to take steroids for a few days. So when I walked into chemo the first time, with a banana and a piece of toast in my system, I walked out with 9 drugs in my body--two of them poison.

Any wonders that I had some issues?

This time, on the printout there was an X by ativan (lorazepam). I asked if they gave that to me, and she said no, since I didn't like it last time. I think that drug was a killer for me. Also, interestingly, they had my "ideal weight" listed on the printout as 126 pounds. They have my height as 5'5". Did they just decide that was an ideal weight for me or what? I haven't weighed that since maybe the winter. So at 113 I was dosed down and I think that made a huge difference as well.

Because I slept. I was nauseous within two hours of chemo and just felt awful. BUT. I slept pretty well Wednesday night. The last few nights have not been so good--three and a half hours a night, maybe. But that was with taking nothing, not even melatonin, and it makes me feel so much more human just to have that much sleep. I apparently just feel these drug effects immediately. Rather than 5-7 days to feel bone pain with the neulasta shot Gabe gave me Thursday, I felt it within 12 hours.

So sleep has gotten better, but other things have become more annoying. On the one hand, I am SO glad I buzzed my hair off. Hair loss is traumatizing not just because of the identity that goes with it and the way it makes your cancer experience so public. It is also just plain disturbing. Remember, you lose ALL your hair on this chemo. Imagine losing hair every time you go to the bathroom. When I scrub my head, little buzzed hairs fall out, and my scalp stings when I lie down on a pillow. I don't know how people do it with a full head of hair. I just really feel like something is WRONG with me. I must really be a sick person now, with hair falling out everywhere. It's awful.

The other really random chemo issue I'm having? When I'm not feeling too nauseous to eat, I still have trouble eating, since my mouth and throat are so dry. I have actually ordered something called artificial saliva. Awesome, huh? It's hard to even swallow water. But the metallic taste in my mouth isn't too bad yet, so if I use plastic-ware, I can still eat some things, especially soft or cold foods.

So though I don't feel good--woozy, dizzy, occasionally sick, tired, sensitive to light, is, again, better than last time. And I'm grateful for something else. I am really glad I didn't do that clinical trial. The drug, avastin, that I would have been offered through that (the one with the scary side effects like bowel perforation, lung fistulas, and strokes) has just been ordered off the market for breast cancer by the FDA. They have decided the drug has no benefit for advanced breast cancer, which is what it was being used for (it was developed for lung cancer I think). Since I don't have advanced breast cancer, or even node-positive cancer, I have no idea why I was offered it in the first place. It is apparently one of the most expensive drugs in the world. The main benefit seems to be to prolong life for some months for advanced cancers, and it was being tested to see if it would halt recurrence. Anyway, boy am I glad I didn't risk some insane side effects for something that would have had no benefit to me and would have been pulled from the market right in the middle of my trial!

One thing I've learned about my experience with chemo is that the Friday after is a good day for me to have some distractions. I'm so used to being home on Fridays with the kids, but I'm not up for taking care of them, so they go to school that day. Lenny had a playdate yesterday instead of school, which was good since I feel guilty about her going to school five days a week. Augie is just too hard to take care of with his insane moving around and 50 poopy diapers a day, so he goes to daycare five days most of the time too. Just a few months ago, he was only going in three days and I was nursing him 5 times a day. How things change. I'm sleeping by myself now, downstairs, to avoid the A/C on my head, and Gabe and I don't have much time together since I am often useless and he is busy around the house. It's really making things different around here. So if anyone's hanging out on a Friday after I have chemo, give me a shout. I'll be too out of it to be exciting, but no need to just get lost in my thoughts!

Tuesday, July 20, 2010

Day 76

Though there isn't much news to report, I really felt that I needed to write a bit about hair again. I have to say that it is very interesting being a bald woman. Well, I'm not yet really bald--that will be in a few days. It's actually fascinating to me how fast my little buzz has grown in just 5 days. I kind of wish it hadn't, since that just means there's more to fall out over the weekend.

As I said earlier, I have been wearing one of my wigs to take Lenny into school and to pick her up. These kids have no clue that one day my hair is significantly longer than the next. They don't care--but they would if they saw me without a wig, and then Lenny would have to answer some questions, and that's not fair for a 4 year old. She has made it clear that she wants me to wear a wig to her school, and that's fine. She's going through enough. Since they're little, I'm sure her classmates' interest would be fleeting. But of course they would notice--for example, the boy next door just laughed when he saw me, and until that moment I hadn't even really thought about being bald in my back yard. I'm sure he'll get used to it though, since he'll see me all the time. And in that situation his parents could explain it to him, leaving Lenny out of the equation.

At work it's been a different story. I've taken the wig off as soon as I got into my office. So in the hall, the cafeteria, and the gym, I've been bald. And everyone has pretended not to notice. My old boss saw me and said "Gaa!!"Then he kind of looked at me and said, "that doesn't look so bad." A few minutes and several non-sequiters later he said, "that looks kind of good actually." Our admin said "Oh, you poor thing!" One of the economists, who happens to be bald himself, told me that he liked my hairdo. Almost everyone else acted as if they noticed nothing different about me. At the gym yesterday it was the elephant in the room. Who is looking and pretending not to? Um, everyone. After class one guy came up to me and said "Well you look different!" Yeah, I know, I said sheepishly. "Well, it looks nice." Today, a young girl saw me at the gym and said "your hair!" I said, yes, well, it wasn't my first choice. She asked if it was "for something." I said yes--breast cancer. She said she was sorry, how long did I know? We got into the whole conversation. At some point she said "at least you have a beautiful face to go with it. It looks good."

In the general world, it's been a mixed bag. On a walk the other day I was wearing a bandana. A neighbor whom I didn't even know knew my name called out "Hey Katy!" from across the street. I thought, how did he recognize me? Gabe thought by my legs. Then, Gabe and I went out the other night and I did indeed go bald. We ate in the south loop and went to see a movie. When you're hanging out in an area full of art students, a hairdo like mine doesn't attract much attention. It was refreshing to be able to not worry about wearing anything on my head and still blend in. I guess in a city the size of Chicago, you could be edgy, you could have cancer, and there's so many damn people most people have seen one or the other and they just don't care. I got a few looks of curiosity, and a few of appreciation, all from men. This just reiterates what women's magazines tell you. When they ask 50 guys what they like about anything pertaining to women they get 50 different answers. The lesson is if you'e got something, someone out there is bound to like it.

What else did I learn from my first few public days as a bald lady? One, that it helps to have people acknowledge a difference. But then again I knew this already. I remember being in a wheelchair and having several kids come up to me at different points and ask what was wrong with my legs. Adults, on the other hand, would give me weird looks or do that adult thing where you pretend not to notice something, thereby making it more obvious that you notice. I much preferred the kid version. Same with this baldness. It helps when people say the right thing too.

Two, I learned that it helps to look good bald. I feel almost strange about it. I mean, it's not like you get a free pass if bald won't flatter you--you do chemo for breast cancer, and you lose your hair. Everyone going through this should have the prerogative to go bald if it makes their lives easier. Sometimes I can almost feel the relief when people tell me I look good, or that it's not that bad. It's like they would just feel terrible if I didn't, and I subjected them to looking at me anyway by not wearing a scarf or a wig or something. Now don't get me wrong, I greatly appreciate the compliments and it makes it much easier to go through a transition that I still wish had never happened. I wish I needed my hair clips and bands, my shampoo. It's hard to get used to rubbing dove soap on my head and taking three minute showers. And there's this strange pressure to somehow change your whole style when you go bald. There are all of these classes and articles written about the right makeup and jewelry to wear if you're bald due to chemo. I've either worn no makeup or the same, and I don't even have pierced ears, so I can't do the jewelry. But I just find it curious that there's so much attention being paid to lessening the impact. One article said that if you are a bald woman, people will notice you. It's inevitable, so give them something good to notice. Really? When men go bald they're told to just rock it out. It's sexy. So I guess I'm going to take that advice. While I greatly miss my pretty hair and the identity that went along with it, it does in a way seem like just hair now. Once my hair was actually gone, at least down to this stubble, I looked at it in the plastic bag and thought, well, that's some very pretty, very dead stuff right there. Part of me, laid out in a bag.

Well, enough with the hair for now. My exciting news is I slept like a normal Katy last night. I fell asleep on the couch watching tv with no melatonin or anything. I woke up about 4 hours later, went up to bed, actually fell asleep eventually. Let's hope the same is true tonight, before I start chemo again tomorrow and the process starts all over. Sigh.

Sleep and hair have dominated my post-chemo blogs, so I feel like I haven't said much about the other chemo side effects. Does anyone really care about this? Who knows, but here goes. I have a super-nose now. I can smell things I never thought existed, and I'm not sure it's a good thing. I'm never thirsty but I am absolutely parched. It's hard to describe the difference, but it's there. I've lost my balance and I get motion sickness. Moreover, I was told I would never get nauseous after the first few days. I got through a week without vomiting. I've gotten sick twice this past week. When Gabe and I went out the other night we got some Indian food, and I took the advice of all the docs who told me to take advantage of days when I was hungry. So I ate a nice big meal. Now this is 113 pound me, so we're not talking huge quantities of food here. And it was low-fat, vegetarian Indian food. But I felt SO sick during the movie. At home it was no better. In fact I felt so sick I did something I've never done in my life--I sat there until the very act of the dry heaving made me vomit. In a sense, I made myself do it. Bad idea. Will I ever eat Indian food again? Boy does spicy food not taste good on the way back up. My stomach and throat hurt for a day after that.

I told the chemo nurse about my vomiting. She said, get this...that maybe I have a stomach bug. So, immediately upon starting chemo I got some anxiety attacks and the stomach flu? They're not, you know, related to chemo or anything right? I'm just giving up on telling them about my side effects unless they might land me in the ER. The docs also seem annoyed with me that I went to a neurologist and to my GP about my sleep. Well, maybe I wouldn't have done that if you hadn't told me to just go to the social worker to sleep! I have since talked to two other breast cancer survivors who had the same exact sleep issue as me. And I only know about 8 survivors, so that's a pretty big percentage, it seems to me.

I've since learned that it can be pretty common on A/C to have this anorexia/bulimia response. You have very little appetite so you don't eat much. Then, when you do eat, it makes you feel sick and you want to vomit. This is exactly what has happened to me. You all know I love to eat. My weight loss has not been achieved by dieting so much as be exercising and eating less. But now, there are so many foods that just aren't appealing. And I can only eat a little at a time. I just ate too much of that Indian stuff the other night. Not literally--just for my new appetite. And I had to make myself get rid of it. I never thought I would do that in a million years. Of all of the strange things people go through, there are a few I could never relate to. Drug and alcohol addiction are two. Anorexia and bulimia are some others. But of course this type has a totally different cause, due to extreme nausea. Regardless, it's kind of bizarre.

Chemo has changed my body so quickly. But except for this hair, it's all going on inside of me. The girl at the gym today came up to me after our initial conversation and said "I'm sorry, should I not have done that?" I said, hey it's no secret. Yesterday everyone acted like they didn't notice so I appreciate you saying something. And she said "Well, you would never know." I got what she meant. I had told her I found out about my breast cancer on May 4 and that I've had two surgeries since then. She's seen me for two and a half months in the gym, favoring one side, not showing up as often, but there, looking like myself. I'm bald, but other than that you would never know. Unless you live with me, or read this blog, that is.

I was reading an article today in BrainChild about stuttering, and the author said a few things that really hit home. She said, "I don't believe everything happens for a reason. I don't believe every problem is an opportunity, or at least an opportunity worth the price." She also said that when asked if the glass is half full or half empty, she sees it as both. That's all exactly right, at least to me. So, here's to round two. I just need to get through the next several days and I can tell myself I'm half done with the really bad stuff, a quarter of the way done with all of it. Dealing with the actual day to day bullshit of chemo is the half empty part, and getting it over with fills the cup.

Sunday, July 18, 2010

Day 74

I'm finding it hard to write a blog today, because apparently I will never be able to top the bald blog. I can't believe the response I got from that! I feel so humbled by all of the nice things people have been saying about me. Once these comments started coming in, I started thinking about how I thought I was pretty good at taking a compliment in the past, because I used to get a lot of them. But then I realized that wasn't really true. In the past, my HAIR was used to receiving compliments--that's probably 99% of what I've been complimented on in my life. There are exceptions--Gabe and other guys I've dated have complimented me on other things, and people in my immediate family have, since my hair is probably not even noticeable to them. Girlfriends have complimented my shoes and stuff like that. But other physical compliments? I really have no idea how to respond, because I have very little experience with it.

So to everyone who has said such nice things about my bald head here, and on facebook, and in personal emails and in person--thank you, thank you. What else can I say?

I am getting used to being bald, to some extent. Looking in the mirror is still strange. I like the feel of the fuzz, but I worry about how shiny and pink my head will be when even that falls out later this week. It was very hard on Friday morning when I came home from a walk and took the bandana off my head and Lenny cried, shouting "I'm tired! I'm tired!" and refusing to look at me. I told her it was ok to think I look weird and to not like how I looked. But I did cry a bit myself about it later. She seems totally used to it by now, as I have been bald at home all the time. Augie seemed confused, but he was equally confused when I was wearing a wig, or a bandana. He was looking for my hair, and not finding it, so all of those alternatives must have been equally weird to him. However, he doesn't seem to care.

Gabe is of the opinion that when my hair grows back I should wear it like this. He really seems to love it. I think he watched too much Star Trek as a child.

Everything that I thought about being bald in public has been true so far. I have been taking walks every day, and I've worn bandanas. I've learned that that is the same as being bald, from a lack of anonymity perspective. People know. They look at you and then try and look away, thinking CANCER. I really don't care what people think, and obviously I'm very public about having cancer. But as women I think we all would like to think we could walk down the street and mind our own business. Sometimes it's hard, mostly because men can be jackasses and they whistle at you or give you a hard time or something. You think, can't I just walk to the train? Leave me alone. When you're pregnant you REALLY hate that stuff. People walk up to you and ask you questions, touch you even. This used to happen to me all the time because of my hair. I hated it, but I was used to it. And there are just times when you don't want to have that cancer conversation, or have people give you that pity look.

So there are some good occasions to wear a wig. I wore a wig to the grocery store yesterday, and when I went out to lunch with a friend on Friday. She said by the time we finished eating she had forgotten I was wearing a wig at all, since it looked natural. She said this after I took it off in the car, and that must have been kind of funny, to see someone take off her hair.

But I will try this bald look too. I'll wear the wig to take Lenny to school, so she doesn't have to deal with other kids' questions. I'll wear it to commute. Then I'll probably take it off in the office and be bald cancer girl at work. People at the fed can handle it. And tonight Gabe and I are going out and he wants me to be bald so he can "show off his hot bald wife." Hmm. We'll see how that goes.

So I'll probably continue to go back and forth on the hair issue and write about it, but I sure got used to it faster than I expected. I was helped along in that process by everyone telling me it looks great. So thanks again!

This sleeping thing I just can't get used to. I did the acupuncture Thursday, which was interesting. I had another of these bizarre experiences while I was waiting where I ran into someone from high school who is a social worker in oncology there. I lived in Oak Park for years in my 20s and never ran into anyone. Now I live in Beverly and go do cancer stuff in Streeterville and I see all these people I knew as a kid. Weird.

After acupuncture, I went to my GP and she checked my thyroid (normal) and prescribed an anti-depressant, trazodone, for sleep. The neurologist/sleep specialist on Wednesday initially told me she thought my sleep issue was anxiety-related (I wanted to leave right then) but after hearing about all my side effect issues, she changed her mind and said she thought I was having "paradoxical" reactions to medication. She gave me some Lunesta samples to try.

I never took the Lunesta or filled the trazodone prescription. I'm scared to take any sleeping pills after what Ambien did to me. And I'm still convinced that I had some withdrawal symptoms from Lorazapaam, even though I took so few of them. But I'm glad I went to the neurologist, because I needed to talk to someone who knew something about epilepsy. She told me that if I had gone that long without sleeping with no seizures, I would probably be fine. She didn't expect me to have any more. That was a huge relief, even if it's just one doctor's opinion. It just didn't help to talk to a cancer doctor about that. Plus, the neurologist knew about all of the different options for sleep--she didn't tell me that there were only three. I think my insomnia is definitely chemo-induced. It might be rare, but I'm not the only one with this problem.

After acupuncture, I came home with these little magnets in my ears and on my wrists. I was supposed to press them throughout the day. I took one of them out of my ear since it was bugging me. I also took melatonin on Thursday night. After writing the bald blog, Gabe and I talked for a while and I didn't even try to go to bed until midnight. I slept on the couch. I realized that due to the fact that we have an old house with radiators, and therefore no central air, that the window a/c blowing directly on my head at night was really bothering me, drying out my extremely dry chemo body even more.

So I did these things, and--I fell asleep. I woke up at 2 am, and thought, shit, I won't be able to go back to bed. I was up for 25 minutes or so, but I didn't move. The next thing I knew, I heard a strange sound. Birds! I actually teared up. It's hard to describe this feeling of gratitude and relief from sleeping less than 4.5 hours. I thought, this means that when I went to sleep, it was night, and now it is morning. That revelation gave me the energy I needed to take an hour long walk at 5:30 AM. The same thing happened Friday night. I thought, hallelujah! I'm saved. I don't know if it was the acupuncture, the melatonin, or just the distance away from chemo and all the other drugs. But I thought if I can get 4 hours of sleep a night, I'll be fine. I have functioned very well on that amount of sleep for large chunks of my life. I'll be able to go to work and everything!

And then there was last night.

I took the melatonin, tried to fall asleep in my actual bed. It didn't work. I went to the couch. I never fell asleep. I was so depressed by that. At 5 AM, I went up to bed. Somehow I fell asleep then for 2.5 hours. I realized that this is why I need to decide about telecommuting on a day to day basis, if I'm allowed. If I have nights like last night, I won't be able to realistically get to work at a regular time. But I could always run downstairs and start working on my laptop. If I sleep from midnight to four, I can go to work and be fine. If I'm not allowed to do this, I will just have to take short term disability. I would rather not do that, but I don't see this insomnia getting fixed anytime soon.

I am dreading chemo this Wednesday. I know it's cumulative, and I can expect it to be worse this time around. More than the sickness I am trying not to think about those days just after with no sleep. So I am holding on to my Lunesta. I will fill the trazodone prescription, and maybe I will save it for a moment of post-chemo desperation. Otherwise, I'm trying to avoid more poison in my body, you know? My body clearly doesn't do what it's "supposed" to do. If it did, I wouldn't have lost weight. I emailed my chemo nurse to tell her I was down to 113. I weighed 117 the day of chemo, and they had my weight at 120 or something. She told me I would need to lose or gain 10 pounds to change my chemo dose. That seemed like bunk to me. As someone who has lost huge amounts of weight post-baby, I know that the difference in my body between 140 and 150 pounds is much less than the difference between 125 and 115. Shouldn't it be about body weight percentage? Anyway she told me that weighing 113 would indeed change my dose. Then she proceeded to say, "Most people don't lose weight on this regimen."

I fail to see the relevance in that statement.

It's funny about acupuncture. Those who know me well know that I'm not a holistic medicine type. I'm not really a spiritual person, and talking to me about my heart's spirit and my energy fields might fall on deaf ears. But I am totally willing to believe that acupuncture works. I mean, if someone decided that filling my body with a poison that is so extreme it kills all kinds of healthy parts of me is good, that it's ok to give me a medicine that I can only take four times in my life (adriamycin) before the risk of it stopping my heart is too great, and that pointing a radioactive gun at my chest 30 times is a good plan, why wouldn't it work to stick some needles in my body and push on some magnets? It's worked for thousands of years, and it doesn't matter to me why. Chemo has been around for what, 30? I'm really glad that Northwestern offers this program that gives cancer patients 6 free "alternative" medical treatments. I'll use it for acupuncture, since that's not covered by insurance.

And maybe, just maybe, I'll sleep "well" a few days a week. Just like everything else with cancer, the good things all become relative. So on my relatively decent 2.5 hours of sleep, I'm signing off to take a family walk. I haven't decided yet if I'll wear a wig. If the kids come along, I will, but if they stay home, probably not. Unfortunately I will never be able to go outside in the summer during the day with a bald head. I really don't need skin cancer on top of breast cancer, right? No, thanks!

Thursday, July 15, 2010

Day 71: GI Jane

So, it's July 15, about 10 weeks into my cancer diagnosis, and...I'm bald. It's late at night so I'm not going to write much. It's been quite a day. I could write about my first acupuncture, my visit to the gp to see if she had any insights into my insomnia, my various attempts to self-diagnose my sleep issue. I could write about the neurologist visit yesterday, or about how every doctor is giving me conflicting advice. I could write about how I've lost 4 pounds in the week since chemo, and they told me that just doesn't happen on this regimen.

I could, but, you know--I'm bald.

So I'm going to write a little about that. I was having some kind of anxiety attack about my hair earlier today. More evidence that the insomnia I'm STILL having is NOT anxiety-related. I know what that feels like now. I thought my heart would leap out of my chest and I couldn't sit still.

I cried in the car on the way to the wig place for ten minutes or so. I was fine the whole time I was waiting, having my hair put into a bunch of ponytails so I could have it turned into this Hat-hair thing, even was ok when she started chopping those off. But at some point I lost it, once most of the ponies were gone. I looked like someone in a labor camp, hair all choppy, like someone did that to me out of spite. Since I was crying, Lisa, the stylist, turned the chair around so I wouldn't have to watch her shave my head. I cried the whole time she was shaving, and I dreaded looking in the mirror when she was done.

It took just a few minutes to shave my head, and when she asked me if I was ready to look, I said no, but go ahead. And my first thought was, I look like a boy. If I was a guy, that's what I'd look like. Gabe disagreed and said he thought I looked beautiful, that I looked like me and he was surprised at how perfectly my head was shaped.

He's required to say that stuff, right?

Anyway, I finished crying pretty quickly. I thought I looked like a boy regardless of Gabe's opinions, but like a boy version of myself, I guess. It's as if I look like a very close sibling of myself. Not me, but me. At least for now I have some stubble--I know I look more normal, odd as that is, than I will in a little while when my head is just smooth. And then there's the eyebrow thing. But I don't need to go there yet--I think this is enough for now.

It's done, right? No more anticipating it, no more feeling my head hurt because my scalp is so sensitive and my heavy, pretty hair was just waiting to fall out. I'm going to be bald for a long time, so I need to start getting used to it. In some ways, I think I look more like myself bald than with these wigs on, but as I'm used to people looking at my head out of appreciation, I don't really look forward to the idea of people looking at me out of curiosity, pity, or revulsion, so I might wear them relatively often. However, in next week's 100 degree temperatures--probably not much. So there are some scarves and bandanas too.

Gabe took pictures the whole time, and there are lots of "in process" pictures that are very hard to look at where I am very upset. Even though this is my cancer blog, I don't have any desire for people to see those. Look, it's me, at one of my weakest cancer moments! Look how much this sucks!

Not appealing.

Until today I somehow never figured out how to post more than one picture per blog. We'll see if I do it right. If so, here's what you'll see--all of these are no makeup pictures, so if ever I can tell what I really look like, it's here: There's Katy with all her ponies in, waiting to have them chopped. There's Katy bald. And then there's Katy with her two new wigs. Let's take a vote on which looks best.

Someone had better pick the bald one, even if you're lying. Good night.

Tuesday, July 13, 2010

Day 69 Redux

Thanks to everyone who is trying to help me through this awful morbid insomnia. I appreciate all of the concern, and I wish that each of you could give me one hour of your sleep--that would be awesome! I was really losing it today. I still feel like a subhuman, but I thought it would be good to update and get out some of my frustration with the medical community. It comes down to this.

No one knows what the hell to do with me.

It's like they think I'm kidding, or lying, about how chemically sensitive I am. When I was dreading chemo in this blog and people would tell me, it might not be that bad, I wasn't trying to be negative. The idea that I will have bizarre side effects is simply the truth for me. This is a big reason why I don't drink, why I've never done drugs, not even smoked pot. I discovered in college that I couldn't take Nyquil because it kept me awake--I had to take Dayquil. Valerian makes me jumpy, I can't sleep after drinking wine. I hallucinate on pain pills, my blood pressure rises from tylenol. They used to tell me I was a trooper as a kid because of the pain I could endure unmedicated. I think even then, I was more afraid of the effects of the drugs than their purported benefit. I still remember crawling into my parents' room when I was 8, unable to walk because of my abdominal pain. Appendicitis, you ask? Nope. Toxic reaction to Depakaine. ER doctor called it, but my neurologist kept me in the hospital a week doing guinea pig tests on me because he didn't believe it. The more meds he gave, the worse my pain was and the more seizures I would have. The meds stopped, I got better. I was "cured." Uh-huh.

It's like I live in opposite land for medicine. Maybe the good metabolism that helps me stay thin also is very efficient at metabolizing medication. Who knows.

No one was calling me back for the longest time today. I called everyone--oncologist, my ob, gp, random nurses, you name it. When I thought I was going to keel over I took a lorazepam--one of the anti-anxiety drugs I was prescribed that I've taken only a few times, and not since last Saturday. This is the drug that knocked me out so much after my first surgery that I fell asleep sitting up eating a cracker. Post-chemo, all it does is make my heart race. I started researching side effects online and realized I NEVER should have taken that drug. People can go through withdrawal after just one dose. Of course this is rare. Of course, that means that probably happened to me, and it might be one reason for my racing heart.

Ambien just made that heart race more. I have tried every kind of relaxation technique, exercise, different foods, bedandryl, herbal tea, you name it. Again, this is not sleeping erratically or getting only a few hours. I would take that. This is NOTHING. I can't tell the difference between day and night. I forgot to shower for two days because I thought it was the same day. And yet somehow I have been working, albeit from home. Anyway, the oncologist's nurse was going to prescribe some other sleeping medicine, and I got totally turned off after looking at the side effect possibilities. Then someone else called me with the following advice: Take no medication at all. Try to meditate. Try acupuncture. Relax.

Oh, ok, I'll go do that! I forgot that I could just relax! Thanks.

So tomorrow I will try acupuncture, but not to help me sleep. It's free, it's something that can appease the docs, and maybe it will help with some other side effects that are physical rather than neurological. I'd be willing to walk on hot coals for sleep, though that's as likely to work as medication or meditation.

These people just don't get it. I have insomnia for one of two reasons: chemo, or the drugs they gave me to counteract the effects of chemo. Perhaps both. These people were trying to talk to me about anxiety, about how we don't realize how stress affects our bodies. Please. I have had breast cancer for two and a half months. I haven't been in denial for one minute. Death? I faced it, I still face it, and everything that goes with it. Loss of fertility, youth, my hair, you all have seen that here. I have dealt with it.

I know what it's like to have anxiety-related insomnia, where you don't sleep well or wake up terrified or can't get back to sleep. That sums up the month of May for me. But I have gone through a lot of bullshit that didn't even bring me down the way it should have--the second surgery, the fact that I had a massive annoying reaction to that surgery, taking steroids for that (21 pills in six days, nightmares, jumpy--STILL COULD SLEEP. compare to 4 total steroid pills post-chemo. I don't think it's the steroids, at least not alone). And none of that kept me awake for a week. That happened the moment I started chemo. Even Gabe admits that while I was miserable in some ways, I was emotionally calm the few days after chemo. It wasn't until the last few days of sleeplessness that I lost all sense of reason.

So I am pretty furious at this idea that I need to talk to a social worker. To do what, talk about breast cancer and how it sucks? At this point, I am having fond memories of breast cancer. Oh, when I only had cancer, and I was still fully functional. Yes it could have killed me, but not as quickly as this chemo might if I end up in the hospital with no immunity (let's hope for no blood transfusion--of course I have the rarest blood type). Breast cancer is not the issue right now. Maybe it will be in six months, but I need to get there first. Chemo is the issue--not my "feelings" about it, but my admittedly "morbid" physical reactions to it.

I don't need to do yoga or talk about my emotions. That might help down the road, or in general with cancer, but right now what I need is to sleep. Any talking I would do would resolve around sleep, not cancer. Once I sleep, then maybe I will see the sun shine again. I am well aware that the lack of sleep is destroying my mood, my sanity, and my perspective. But that is what is happening--it's not the other way around.

There is a reason that sleep deprivation is used as a torture technique. It's one of the reasons Winston gave up Julia. It turns you into a primal being, and it messes with everything in your body. I have started starving at 2 in the morning because my body thinks it's mealtime. When I close my eyes I can feel them moving, like scared skittish animals under my eyelids. I am so tired I don't think when I'm resting. They keep telling me to turn my mind off. No problem! It hasn't been on in days!

After taking the lorazipam today I rested for a while. No sleep, heart seemed to be worse. And then I got up to go to the bathroom. And I fell over. That's when I started researching the side effects. Give it a try--I feel like these drug companies are insane to make some of these things.

My seizure history puts the docs at a loss too. They were telling me they've never seen someone have a chemo-induced seizure. First of all, I'm not worried about that. I'm worried about a sleep-deprivation seizure. If you had a clue about neurology you would know that is a big possibility. Second, there are a lot of things that have happened to me that they have never seen. Never seen someone not sleep at all for days. Never seen someone have toes tingling the day after AC. 95% of people on this chemo will be constipated, they told me. Guess who is having diarrhea? Sorry if that's TMI, but I'm just saying. You will lose your ovarian function, they told me. Today, I got my period.

Gabe and I called the babysitter again today so I could get some middle eastern food and we could talk. I never realized how hard it is to find something on a middle eastern menu that isn't grilled. Anyway, at dinner he asked, I wonder what they say to men who have breast cancer? I think that's a great point. What do you think they said to Richard Roundtree? Hey Shaft, you have issues with your breast cancer? Well, get over it. Go meditate, do some yoga. Take these 5 drugs that we have never tested fully on men with breast cancer. Impotence? Who cares? You're Shaft, right? Maybe they told him to darken the room, put on some mood music and think happy thoughts (I was literally told that today). Do you think?

I'm doubting it. Imagine telling a room full of men diagnosed with prostrate cancer to talk it out, do some pilates. It's like it's still the 19th century and women are just crazy hysterics. But not this lady. If chemo is poison that kills cancer cells, mouth cells, hormonal cells, hair cells, white blood cells, fingernail cells, intestinal cells, and more, why the hell couldn't it cause your brain to forget how to sleep?

Maybe next time they tell me they don't know what to do with me, they have never seen this before, and I should call a social worker, I will tell them to talk to me like I am Richard Roundtree. I bet you've never seen that shit before either. But you're not going to talk to him like he's lost his mind, right? Or you had better watch out.

Day 69

Is that what day it is? Because honestly I have lost track. It's three in the morning. I haven't slept since Saturday, when my body finally got so tired it gave me about 5 hours of sleep after I took some anti-anxiety/anti-nausea medication. This is going to be a depressing blog, in case you don't want to read it.

I wish I had never started chemo.

My worst fears are coming true. This chemo has made me non-functioning in many ways, but not for the reasons I expected--not at all. I was worried about fatigue or menopause or chemobrain, but at this point I would take all of that if I could just trade it for some sleep. I finally got a prescription for some generic ambien yesterday. I worked from home, because I didn't know if I would crash at the office. I took two walks. I ate well. I actually got a lot of work done, which was surprising since I am so tired that I can hardly see and looking at a computer is hard.

I have the lowest dose of ambien, and I was scared of taking it so last night I cut that in half. An hour or so later, I took the other half. I was given permission to take 10 mg, and these pills were 5, so a few hours later I took another one.

To absolutely no effect.

Well, that's not true. They made my heart race and it felt more difficult to breathe. But no sleep. None. I was worried about the side effects and the grogginess. It never occurred to me that the shit just wouldn't work at all. Tomorrow, Wednesday, I enter the "nadir" face of my immunity where I am at highest risk of infection. How can a person fight off infection with no sleep? I was told that sleeping and eating well were the most important things, in addition to lots of water. Water and food I can do, but this lack of sleep is something I can't control, and believe me I've tried everything. Ambien was just the last resort.

I have had trouble sleeping since I was 9 years old. Gabe was telling me the other day that we need to do something about my sleep. Sorry babe but this is different. This is not being unable to fall asleep until 2 am, tossing and turning, waking up easily at any noise, getting up at 4 am and not being able to fall back asleep. This is not my mind racing. Shit, my mind is barely working. This is chemo-induced insomnia, morbid insomnia they call it. And besides infection there is a real concern that it could severely impact my life.

I had a grand mal seizure in school when I was 11 years old. I had been off of medication for epilepsy for a few years and had been fine. Right before the seizure, I had gone to two sleepovers that weekend and hadn't slept much, and it's thought that that was the trigger (in addition to my proclivity for seizures--a regular person could not sleep and not have seizures, obviously). This lack of sleep could very well give me seizures again. That would mean six months without driving and anti-convulsants for the rest of my life, poisoning my liver and my metabolism and doing all sorts of other stuff to my insides. It would mean I would need to think about being able to care for my kids by myself. It would mean that cancer, or rather, treatment for cancer, gave me a condition I managed to banish from my life 17 years ago when I stopped taking medication for good. The thing is, they took me off of that medication at that point because I had "grown out of it." I had childhood epilepsy, it was assumed, and I was well-controlled on medication, so they took me off of it because I had grown up. Well, if it starts again, there's no growing up anymore. I wouldn't be able to stop medication.

It is very hard to function like this. I worry that I will drop my baby if I pick him up because I'm so out of it. I thought about going on an errand yesterday while working from home and decided it would be a bad idea to drive. I think I am going to have to ask permission to work from home for the time being, as I can't see putting myself on a train and in a busy office building with zero immunity.

What's the point of doing this? It might be all for nothing. I feel sub-human at this point, and in a few days I'll look that way too. Stripped down to the bare bones of a person, emotionally, physically. I can't even complain about bad heartburn, extreme dehydration, my mouth hurting, the general feeling of malaise. That just all pales in comparison. I would be tired from chemo anyway, and I have slept five hours in one stretch in the last six nights.

I've done enough chemo with just the one to make myself bald so it's hardly worth stopping--except I want to be able to function. Here's what is getting me now--here's the depressing part. It's like my body is breaking it down for me, telling me how it really is. Katy, you fooled yourself into thinking you were an in-shape, healthy, high-functioning attractive person. Well that is bullshit. You have cancer, and maybe epilepsy, you can't take care of your kids or work, you can barely think, and you sure as hell aren't going to want to look in the mirror in a few days. That's how it really is, and all the rest of it was just a joke.

Maybe with some sleep I would feel more positive. Right now I just feel like a shell of my former self. I feel like everyone else my age is doing normal 34 year old things--having babies, working, thinking about preschool for their kids, planning vacations, fighting with their spouses, working out, having early midlife crises, whatever. I'm just stuck in bare-survival mode, supposedly working on not dying. I feel 100 years old.

I hope this blog doesn't scare everyone off--I'm actually surprisingly good around company. I've had some friends visit over the last few days and that's been great--it fools me for a few hours, so I can feel somewhat normal again. But then night comes, and unfortunately over the last week, it hasn't really ended.

Saturday, July 10, 2010

Day 66: Insomnia Blog

I'm writing this blog at 4 in the morning because I have been up since 11. It's actually more accurate to say that I've been up since about Wednesday. Chemo sucks, but I have to say that the worst effect for me so far is this extreme insomnia. I have decided to forgo the steroid I'm supposed to take for the next two days to see if that helps, but I doubt if that's it. I was on a much more extreme steroid for the rash I had, and while it caused some insomnia I still slept, even with crazy dreams.

This is just ridiculous.

I mean, this is chemo. On the one hand, I'm exhausted. I was waiting for that extreme fatigue to hit and I was afraid of it. Now I would almost welcome it, which I know is stupid, because chemo fatigue is not actually relieved by sleep or rest. Every day I hit the wall sometime in the late afternoon and my body just needs to lie down. This is a bad time to feel that way when you have little kids who are coming home from daycare and getting ready for bed. I did manage to feed Augie his bottle on Thursday night and read Lenny stories before bed. Otherwise, I can't say I've done much with the kids.

I started to feel bad the night of chemo. Everyone told me the first day would be fine and I wouldn't feel a thing, and that days 3-4 would be the worst. I felt ok going home on the train, but then I was extremely nauseous, my toes were tingling, my head was killing me. They give you 5 anti-nausea drugs pre-chemo with this AC, so the nausea was a surprise. I came home with a slew of medications, and I tried to take the anti-anxiety/anti-nausea medication in order to sleep. It is supposed to totally knock you on your ass. Well, it didn't work. It made my eyes heavy and I felt groggy, but I didn't actually sleep.

Thursday I still felt very woozy, and I ate like I had the flu. I think my mistake on Wednesday was eating a normal dinner, even though that's what they told me to do. So Thursday it was a little bit of scrambled eggs, some toast, some cantaloupe with cottage cheese for protein. Yesterday I could eat a little more, but not much. At least I still have my sense of taste for now. In fact, my sense of smell is on fire. I can't stand the smell of a lot of foods, especially hot foods. It's a good thing I'm not supposed to change poopy diapers anyway, because I know I would hurl just to be around them. I actually stopped my skinny daughter from eating sausage for breakfast yesterday because I couldn't stand even the thought of the smell.

I never had that with pregnancy, with one exception. When I was pregnant with Lenny I couldn't stand the smell of ripe bananas. As in, I would need for them to immediately be removed from my presence. And I love bananas, and making banana bread with ripe bananas. Weird. I also have never had heartburn, not even when pregnant. Now everything I put in my mouth, including all the water I am supposed to drink, feels like it's going to come right back up with this horrible reflux.

And I just feel foggy. Forget chemobrain, it's too early for that. People need to sleep to function. I can get by on very little sleep, but we're talking days here. I am really concerned that I won't be able to work. I am thinking about asking for sleeping pills. I've never wanted to take those--they scare me. Even though I don't have an addictive personality, I'm afraid I would get addicted to ambien or have some of those weird side effects like sleep-driving or something. I'm not worried about the kids. Augie is sleeping through the night now, and Gabe can handle them if I'm knocked out. I just hate the idea of more drugs in my body.

If not for this extreme insomnia I would say that so far chemo is doable. I don't feel good, and I felt miserable for a few days. I feel sick all the time, but it's not as bad as it could be. Gabe gave me the Neulasta shot on Thursday for my white blood cell count--it seemed easier for him to give me the shot in my butt than to give it to myself in the stomach--and I've had arthritis in my hips ever since. I am not supposed to feel any bone pain from that drug for 5-7 days after it was given, but with my existing arthritis I'm not surprised. So I'm achy, and woozy, and my head hurts and this heartburn really sucks, and after eating anything at all I want to lie down, but that makes me feel worse. But most of all, I am about to lose my mind if I can't get some sleep.

The chemo experience itself was ok, once I got in. We were waiting a long time for a room to open up for some reason. I finally met the nurse I've talked to on the phone and emailed with a lot, and she was great. She explained everything to me, showed me how to do the shot, went over potential side effects. In fact when I called her on Thursday she kind of laughed at me and said that after I was done with cancer, I should never take medication again. I appreciated that-she actually believed me about my symptoms, which were rare right away. A lot of times I think doctors don't believe me, or think I'm a hypochondriac, when I explain how chemically sensitive I am and why I dread taking medication. But this is the woman who is allergic to most antibiotics, who throws up after general anesthesia, who spent a week in the hospital due to a toxic reaction to anti-convulsants, who can't take any decent painkillers and even gets a racing heart from Tylenol. So I was glad she agreed with me, and she gave me permission to halve my steroid. Unless I feel really nauseous today, I'm not even asking permission to not take it.

Anyway, back to chemo. Once we were ready to go she did a great job placing the IV in my hand. She told me there was no reason I shouldn't be able to get through chemo without a port. Thank God. I just didn't want another operation, another alien object in me, and I will admit, another scar on my chest. The left side is scarred enough, who needs that on the right? So I got the pre-chemo meds in the IV, in addition to my Emend pill ($600 for six pills of this anti-nausea drug. You would die laughing if you saw these medical bills. First surgery? $30k. Twice what it cost to have a baby and stay in the hospital for two days.) Then she "pushed" the Koolaid red adriamycin (sp?) into me--two huge vials of it, but that only took about five minutes. Then the cytoxan dripped into me for 45 minutes. This chemo is much shorter, and we would have been out of there much sooner if it hadn't been for all the pre-chemo talking and explaining that needed to happen. The taxol, on the other hand, will be 3.5 hours. Ugh. The thing is, the IV in the hand does hurt. So for 90 minutes it's fine, but 3.5 hours! Still, much better than the port.

I've tried to be as normal as possible, but it's hard. I've taken walks every day, not as long as I normally would, and not by myself, but I've done it. Yesterday I tried not to sit or lay down for most of the day, to see if moving around, just putzing around the house, would help with sleep. I definitely felt exhausted after my afternoon walk, but not enough to actually fall asleep. I think I slept for about 90 minutes last night.

And now I'm feeling woozy again. I'm sipping some water and eating some crackers, but it's not helping. Today is our all-day block party, which is usually a lot of fun. We've hired a teenage babysitter, since Augie is just walking, will need to nap, etc., and Lenny will want to be outside all day. I know I am going to be mostly useless, so this way the girl can watch one of the kids and Gabe can be with the other one. I'll make a few appearances, but it will sure be different than last year when I sat around nursing my 5 week old in public the whole day. By that time I had already lost 25 or more pounds of baby weight and I felt great and had this cute little guy attached to my boob all day. This year, he's walking, and I should be able to be out there watching him stick out his big belly for balance while he tears through the street. And he does, he tears. He didn't even pull up until he was 11 months old and now he just wants to run, so he falls a lot. But I know I will be inside a lot of the day, trying to figure out how to be comfortable. And if I don't feel better by Monday, or at least more human, work will be a challenge.

I want to work. I would like the distraction, to some extent. On the other hand I'm pretty damn distracted with a 1 year old and a 4 year old. So we'll see. It's just that October 13 seems so very far away. That's my last chemo session. I know the effects of chemo won't end then, but right now I'm just thinking about 3 entire months without sleep, and I'm remembering that Insomnia movie set in Alaska, and I can see how you would go crazy. I also know that I am in the easy part now, because the longer-term effects of chemo haven't had a chance to happen yet. After three days, you aren't going to have menopause or chemobrain. Feeling like this with hot flashes too? Ugh.

And there's another chemo side effect that hasn't happened yet. I still have my hair. Only until Thursday, when I get it shaved off a full week before it's supposed to fall out. So then I will look repulsive in addition to everything else. I really think I will be down that day, and maybe I will post a bald picture of myself, so you all will need to tell me I don't look so bad, even if it's not true. Right now, outside of my "chemo glow" (red face), I look pretty normal. I can see how women gain weight on chemo though. This nausea actually makes you want to munch all the time. I told the nurse I really didn't want to gain weight, not only because I worked hard to lose it, but because I'm paranoid about not finding cancer if I do. She understood and said they would keep an eye on me. I'm pretty sure if I had said that to the oncologist he would have told me that was the least of my problems. So I like this nurse, but she can't make chemo easier. This is the really lonely part, where you just have to go through this yourself. What else to do?

Clearly this blog isn't very insightful, and I can see now how people say that once you are in treatment, things change drastically. Some things are better. Between May 4 and June 25 I really was living with emotional torture that is hard to describe to someone who hasn't been there. Finding out about cancer, wondering if I would die, not knowing my stage or prognosis, waiting for the BRCA, waking up in surgery, thinking I was done with surgery, needing to do it again, not knowing if I would need to do a mastectomy until two days after my second surgery, putting off chemo. There was so much to think about and anticipate.

Now my mindframe is different. It's not about what the future holds, how will Katy be in the end. Maybe I'll feel like that again. Right now though, it's, can I make it down the stairs to write this blog? Should I eat breakfast or just a cracker? Will my heart ever stop racing enough for me to sleep? Can my kids possibly talk quieter because if not my head is going to explode? And what will I do in the 7-12 days post-chemo when my white blood cells are down and I'm at high risk of infection?

And then, why am I doing this to myself again? Wednesday at 2 pm I was totally healthy. No cancer in my body that anyone knows about, walked from the Fed to Northwestern on a very hot and humid day with no problem, speeding past everyone, making all the lights. That was the hardest part of the first round for me. I was so nervous, so anxious. Waiting for the room was making me crazy. The room itself was nice, I suppose. It was private, I had my own bed and tv, and I did listen to one of the mixes I've received--4 people sent them to me so thanks! But I just dreaded when that IV went in and I voluntarily gave up my health. I know I don't want to be in that 15%. But to poison yourself in this way for a stage one cancer that never made you feel sick is really difficult. Other cancers, I can see it more, because you get sick. Brain cancer gives you terrible headaches, maybe seizures. Bone cancer gives you pain, lung cancer makes it hard to breathe, liver or pancreatic cancer make you very sick (well, they usually kills you as well) as do colon cancers. I can see chemo in those cases--hey, this is making me better. If you are stage 3 or 4, hell if you are stage 2 with cancer in the nodes, it makes sense. But I'm stage one, had no pain or sickness from breast cancer, no health issues at all. I had a baby happily chomping away at my cancerous breast for his entire life. And now, soon enough, I'll be that bald cancer girl for a while, and it seems like that's coming out of nowhere. I do still want to be out in the world and see people, but right now it's hard to even think clearly, so I'm proud of myself for writing this blog, especially because a new chemo effect of blurry vision seems to have just come on the scene. As someone once said, to sleep, perchance to dream! Oh how I wish.

Sunday, July 4, 2010

Day 60

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.