Sunday, November 7, 2010

Day 185: Bloggers Block

So I think I've either hit the point in my treatment where I don't want to think or write about it anymore or I am just too damn tired to sit down and write. On the off chance that it's the second thing, I am going to make myself do it at least once a week. Since I'm not working, and I spend a lot of time by myself, or talking to small kids, this is a good outlet to remind myself that I have a brain, and one that doesn't seem to have been marred by chemo, at least that I can tell.

Now my body--that's another story. Actually I think if I wasn't in this extreme menopause my recovery from chemo would be pretty remarkable, considering all the crap that happened and all the weird side effects I had. I feel almost like myself, except with a thousand hot flashes and no period since September 1. That's the crazy thing about this menopause. I had a normal period, regular cycle, and then BAM--less than two weeks later I was in full-blown menopause. What crap. Sometimes my arms fall asleep at night, and I wonder if that's some odd kind of neuroapthy, but it doesn't happen during the day so it doesn't affect my ability to do normal things. I also think that it's possible that that always happens, because I sleep on my sides, but I just wouldn't know because the rest of me is asleep too. But I wake up a few times an hour if I do fall asleep, so I feel these things.

Otherwise, it's all good, I guess. I have a little cold right now but other than that, I feel more like my old self, and I'm not quite three weeks out of chemo. My nails are fine, my memory's intact, I have no neuropathy that I can tell, and my weight is the same or a pound or two less than when I started. Many things that I worried about didn't happen, at least not long term things. Other side effects are harder to see--like the heart issue. The non-chemo issues are there too--I could still have lymphedema at any time. And of course, my cancer could come back. Talk about the elephant in the room. It's so much easier to focus on the little things, or the side effects, than on the Big C itself. It's so much easier to focus on something like hair, for example. So why not talk about that a bit?

My hair is starting to come in for real now, as you can see in these pictures. It still looks weird to me, and hell if I can tell if it's red, but I don't think I have any other genetic option except white. It looks and feels like a newborn's hair, or like a baby chick, as someone said today. Gabe is obsessed with it, and people seem to like to touch it. Virgin hair on a 35 year old mother of two--a novelty. For me, I would rather just be bald or have normal hair. I'm a little done with being a novelty, I've done that enough in the last 25 years. On the one hand, I care about being cancer girl. I don't like being seen that way. On the other, I don't care enough to change the way I'm doing things. Wearing a wig just seems so alien to me I don't know what I was thinking when I bought them. So when I'm out and about and people stare at me, it bugs me, but only for a second, and then I realize how much more it would bug to wear a wig and I just shrug it off. Someone told me this week that it took a lot of self-confidence to go around bald like I do. I said no, not at all. Just a lot of laziness. Too lazy to wear a wig, too lazy to care what people think. Every time people see some kind of strength in this cancer fight, I feel like they're just uncovering a character flaw masquerading as something else.

For example, I went to work for a day this week, and I wore a wig, since I didn't want to explain to people at this meeting what was going on. I only see these people twice a year so it didn't seem worth it. But boy did a few people who weren't at the meeting, such as people who see me mostly at the gym, do double takes when they saw me. Like wait--didn't I just see you a month ago and you were bald? Did your hair grow that fast? That was kind of funny. I'm glad I went in--it made me realize that it is a damn good thing I'm not working right now. Four hot flashes during a two hour meeting, while wearing a wig and a suit. I thought I would pass out. This might not go away anytime soon and I realize that, but at least I have a few months to not worry about it. At home, I can just strip down to a camisole, or sometimes if it's really bad, to nothing. I can't exactly do that at work. OK, I suppose I could since I have an office, but it doesn't seem advisable.

I also realized that my work is interesting, and that someday I'll look back and say, you know that insanity that happened starting in 2008? I worked at the Fed then, and boy was that something else. I was too distracted to think that way in the latter half of chemo, but after being away for a while and feeling better, I can see it now. So I gained a new appreciation for what I do, but it was still very strange to see people at work. A few folks just found out and I had no idea they didn't know.

One guy told me my hair was pretty and then paused and said he hadn't seen me in a while and that he hoped everything was ok. I realized he was trying to graciously ask what was up, that he knew that wasn't my hair. I was impressed that a guy would notice such a subtle thing, and I thought for a second about how to explain my situation in a way that would match his graciousness. But instead, I answered Katy-style. Thanks, but it's not my hair. I guess you might not know, but I'm doing treatment for breast cancer.

Was that the right way to handle it? I have no clue. Hiding it just seems like too much work. There was something in Parade this morning about a young couple getting married, and the guy has a rare and aggressive form of cancer and not long to live. When they met, it was at a bar and she asked him why he wasn't drinking (why do people do that? do you ask people at a steakhouse why they're eating fish? who cares?) and he said "I have cancer so I can't." Boo-yah, right? Nope, she didn't care, and chatted him up anyway.

That's something I haven't experienced. I can't imagine being able to meet new people now, except for those who have dealt with breast cancer or another form of cancer. People just seem too uncomfortable with the whole thing. I can't imagine dating while dealing with this, which is something that a lot of women my age would be doing. I'm still surprised that my husband is attracted to me and wants to go out on public dates with me, and he's kind of required to by contract, right? And I'm not just talking about being bald, or having scarred and marked up breasts, or having tattoos (can you see it in the picture? right above the V in my shirt. a blue dot. I have three of them. I asked them--why blue? Couldn't you get brown or black or something that could actually look normal on a human being? I look down at this and in less lucid moments I think...melanoma--look at those fuzzy edges and what's that weird color! give a girl with cancer a break.)

It's having cancer itself that makes it hard for people to relate to you, even if you look normal. You could be completely capable of having normal conversations and some people just would not know what to say to you. Then go a step further and think about someone wanting to sleep with you, fall in love with you, marry you? Now, I feel like a normal person, so those seem like logical things to me, but I know many people just couldn't go there. I remember when I was doing blind dating (some people might not know that's how Gabe and I met...a success story!) and I went out with a guy who described himself perfectly accurately, less the crutches he had due to spinal meningitis he had as an infant that left him in a wheelchair most of the time. He had picked the ground floor bar we went to because he could walk into it. I asked him why he didn't tell me beforehand, and he said, because you never would have gone out with me. I said, sure I would have, and I would have found you less annoying because I would have understood why you were rejecting every one of my suggestions of a place to go to eat. He didn't believe me. At some point in the date it came out that I had been in a wheelchair for a while, and he said, oh, well, it's different for you then. Other people wouldn't go out with me if they knew. And I'm sure he was right. We never went out again, and I'm happy to say it was because there was just no spark there. I said to him, don't people realize ANYONE could be in your situation? It's easier to end up disabled than just about anything. As I found out--you walk outside and BAM. It has nothing to do with you, your karma, your health, your social class, your habits, nothing. But I also see that many people just have trouble relating to something that seems so scary, perhaps in part BECAUSE it could happen to them.

I mean, I have trouble relating to myself in that regard. Now that I'm done with chemo and my physical self feels a little more normal, I have these haunting thoughts all the time. And those thoughts can be summed up with one word, or one question to be more accurate: Really?

Is this really happening? Did I really just go through all this stuff over the last six months? Me? I feel so relatively healthy, and in shape. I went to pilates last week and I'm going to do some personal training tomorrow with a friend. I walk an hour a day, do weights at home, cook, do laundry, pick up babies (I included the one with me and Augie because the kid already looks bigger than me--his head anyway--and he's not even two), talk to people about non-cancer things. How is it possible that I have cancer, or as Gabe says, that I HAD cancer? There's another secret reason for this blog. This blog makes it true, makes it impossible to forget.

I'm still not ready to put my cancer in the past tense, as Gabe is, at least not while I'm burning the hell out of myself. It might sound odd, but it's almost harder to think of the cancer as gone right now. Because then it would be next to impossible to make myself do chemo and radiation. While radiation has not yet caused any side effects for me after the 9 treatments I've done--no skin changes yet, no fatigue--it is a pain in the ass, and it is a crazy amount of poison if you think about it too much. I have to be doing this shit for some kind of reason.

But still, I think with amazement--how could I have been that close to death? What if I hadn't found the lump, and a few months went by, and it spread? How is it possible that I could have died, that I still could? Even when I look in the mirror, or at these pictures, and I see a baldish woman with no left eyebrow, who is exhausted from lack of sleep or sometimes bright red and sweaty from hot flashes, I still find it surreal. That's still me, and I don't look like a dying person, or someone with a chronic illness. I look like me, bald.

It's not that I'm in denial or that I don't believe it, it's just that it seems so damn absurd on the one hand, so strangely commonplace on the other. That's the thing I've never admitted to in the blog. Cancer is terrifying and horrible. But for me, there's a small piece of me that feels like, ok, here's another thing to do, another thing that went wrong with my body that I need to handle. Here we go again. It scares me to feel that way, because this is much more serious than other things I've dealt with, and I worry that I don't take it seriously enough.

And then I realize that I have, and I do. We watched Toy Story 3 on netflix this weekend. Gabe had never seen it, and he sobbed through it, as I expected. It brought me back to seeing it with Lenny just two weeks or so past diagnosis. Crying when Andy leaves for college? Normal, even if I don't often cry. Crying when they have that touching scene of him playing with his toys for the last time? Normal. But you know the scary scene when they're all about to be incinerated before the aliens save them? I bawled at that in the theater. All these toys holding hands, waiting to die, looking at the fiery death that awaited them, trying to get a little comfort at the end. That's how I felt back then, sitting in a theater with my 4 year old daughter, wondering if I would see her turn five. I'm not in that dark place now, but it's still with me. I'm still a little bit darker, heavier in thought than I've ever been.

I had a dream about vampires last night. Half the world had turned into vampires and the other half was fighting them. I was fighting, but I was by myself, and Gabe was with the kids so I didn't know if they were ok or not. One of the strangers in my dream told me I needed to save myself first, because the place they were in was safer and I could get to them later. So I killed some bad guys.

You can see why I don't need a dream interpreter. It's either something like that, with the message slapping me in the face, or it's a dream of me eating product 19 for breakfast, and there's no message at all. Or there's no dream, because there's no sleep. But you get what I'm saying. It's hard when it seems easy, because cancer could just take me, and I might not have a clue. Some people don't live as long as I have since my cancer diagnosis. Some don't live six months and I'm trying for 60 years. It might be too much to ask, so how about enough to just get my kids to that safe place, when they can take care of themselves? Or at least long enough for Augie to stop calling his pacifier his mama? Again, give a girl with cancer a break.


  1. Why do any of these men love us? I'm amazed at the barrage of depressing, neurotic outbursts I can heap on Geoff and still have him with me at the end of the day. Calm, comforting, and loving. Give yourself the Katy-type answer: Gabe's just that guy.

    The elephant is rough, though. But you've gotten my wild-kingdom pep talk before, so I won't bore you with that again. I'm just happy you're here now, and I hope to be saying that for a long, long time.

    Instead, how about some other thoughts (not to ignore death, because you know I’ll talk about that any time you want, but just to relate on other levels, too):
    I'm with you on the lack of wigs. I have no patience with routine hair coloring, so I am a salt-and-pepper 35-year-old (makes me think of your Aunt Becky's hair sometimes). And is Augie really calling his pacifier "Mama?" Gee thanks, kid. Here you are trying to make sure he's developing speech, and this is how he repays you.

    Also, since I'm all about the quotes... (Yeah, I know, as Emerson once said, "I hate quotations. Tell me what you know.") ... here's an anonymous one:

    "Life is simple. It's just not easy."

    Would be nice to just get a break from the not-easy once in a while, though, wouldn’t it. You’ll get a break. After the menopause calms down, hopefully there’ll be a moment when everything is groovy for a time. And seriously, promise me you’ll soak that time up like a sponge. Because you just know that a whole bunch of new craziness will probably show up, good craziness I mean, but still crazy all the same. So, hang in there and soak up the groovy when it comes.

    (This sentimental crap that I’m writing is partly because I love you and partly because I’m giving myself a little pep-talk, too. Rough time with the girl, last night. I had no idea anyone that size could scream that loud and that long. I mean, it was getting close to an hour. I almost would have taken her to the ER... if I hadn’t known that she was just pissed at me for trying to take her shoe off. Seriously. One whole hour. I’m surprised she could even speak this morning.)

    And, Dude, your tattoo is rad.

  2. Hey hon,
    I meant to tell you (when we talked this morning) that the hair coming in definitely looks red - like when the kids were little(r) and their hair was just growing out - the pics showed that red tint - and sure enough...

    And I have to say Julie -
    I am glad for your sake that you didn't take BOTH shoes off.

    Nothing so precious - nothing in the world so precious...


  3. T was likewise annoyed when I started refering to his cancer in the past tense. Being in treatment for cancer seemed more accurate. And OK, this is NOT a nice thing for me to say out loud, but if cancer comes back, it's new and separate and it's a Big F-ing Deal, not just some continuation of same.

    That was totally the right answer to give that guy, by the way. He was risking an answer of everything's fine, what the hell are you trying to imply, jerk? So a matter-of-fact answer was a good thing.

    Lots happening at the Fed. Every time I hear something on the news, I think, Katy works there. She's so smart.

    Product 19, huh? I dunno, random enough that it may have meaning--the commodification of daily consumption, a harkening back to 1982, or some such nonsense. ;)