Day 218: It's All Over but the Shoutin'

This day has finally come, and it feels so anti-climatic in a way. For months when someone asked Gabe how he was doing, he would say, ask me in mid-December, or ask me in January. And now here we are, December 10. Shouldn’t there be fireworks? When you see me walking down the street, shouldn’t I have that glow like pregnant women do? Shouldn’t I get something, some kind of a prize? I guess not, since there’s no guarantee I won’t be doing all of this again at some point. And all of this was a hell of a lot, and I realize now I was so anxious to get it done that I didn’t give myself any breaks. I found something strange in my breast and went to the doctor the next morning. He told me he was 99% sure it was nothing but gave me an ultrasound order just in case, and told me I could wait to have it done. Six days later I went in for the ultrasound that ultimately turned into a core biopsy and a cancer diagnosis the next day. A month after diagnosis—the earliest date possible—I had surgery; 19 days later I had surgery again; 2 weeks after that I started chemo and 8 days after chemo ended I started radiation. No rest for the weary, right? I wouldn't change a thing though, as I ended just in time--it's been cold and snowy here already, and we are set for single digit high temperatures next week after a big storm this weekend. I'm so glad I won't have to go out every morning to burn myself in that weather.

I actually did get something today—the ladies who did my radiation cheered for me and blew bubbles, as they always do when someone “graduates.” I really liked the people who did my radiation, and it’s a little strange that I won’t be seeing them every day anymore. It’s like some kind of Stockholm syndrome, but the captors were actually nice people. I had the same main tech for the first 28 treatments, and the assistant was one of three different women. This last week for the boost I was in a different, colder, more sterile room (the “dungeon,” they call it) with different techs. While they were still very nice, it wasn’t the same as the women who complimented me almost every single day on my clothes or my shoes and told me stories about their kids every day for six weeks. As if I was a normal person, a woman, not a cancer patient. My main tech gave me a big hug as I left. It must be a strange job.

It’s just so hard to believe that I’m done with cancer treatment. No drugs, nothing left for me to do but wait and get mammograms all the time and wonder if every strange pain is stage IV cancer. Bubbles or no, no matter what anyone says, life doesn’t change all that much. I will still make dinner and do laundry tonight, and there will be no huge life or career changes, no trip around the world, no new love affair, not even a drumroll. But wait, what did I write a minute ago…I’m done with cancer treatment! You hear that? Done! Take that!

Maybe instead of fireworks I could be my nerdy self and do some math, take stock of the situation. I can do that in conjunction with using my least-favorite cancer metaphor of the “war” or “fight” on cancer. Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

1 core needle biopsy
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

Who won? Well, it’s hard to say. Over the last seven months I have lost the following, to varying degrees of severity, duration and permanence.

My:
hair, mucous, sweat glands, ovarian function, fertility, menstrual cycles, sex drive, chunk of the left breast, 5 lymph nodes, a bunch of nerve endings, ability to eat, ability to sleep, nice peach color on the left side of my chest, unmarked body (damn tattoos), use of one of the veins in my hand, ability to nurse my infant son, ability to have sex without lube, youth, potentially my identity-forming hair color (is it red? Is it brown? It had BETTER be red), a few of my friends and some of my self esteem.

I have kept a lot of things as well. I have always been able to think and remember, as I never had chemo brain. Therefore, I could write this blog. Radiation hasn’t affected me in any severe way and I believe the burns will be quite temporary. I maintained my complexion, skin color (except the parts that were radiated), original body weight and overall figure. I didn’t develop neuropathy. I never looked particularly un-healthy and my energy level has remained amazingly high, if I do say so myself. I had those times in the brutal months of chemo when I felt like I was sub-human, and yet I walked almost every day for an hour. I kept most of my friends and even found that people I didn’t know that well wanted to do something to help me.

I had a ton of support, but a lot of loneliness too. A lot of living inside this still-working brain.

I kept my sense of self, and my roles in life, for the most part, though everything seemed different. I worked full-time for 5 of the 7 months of my continuous treatment, though I did telecommute at times. Seriously, when I look at the list above, I wonder how I had time to do anything but cancer. How does anyone? And yet everyone does their normal things, for the most part. I was still mom, the no-nonsense one, the one who doesn’t take shit, but I was sick mom, bald mom, somewhat scary mom, at the same time. I was still married to someone who was crazy about me, but there was distance there at times, especially during chemo when he was terrified he would get me sick if he was too close to me, and I would die. When I wasn’t in the midst of the worst parts of chemo, I cooked and cleaned, and all along I hung out with people and made jokes and tried to walk around bald like it was no big thing. I kept my sense of laziness and lack of interest in what people thought right until the bitter end. I remained the pissed off somewhat cranky person who doesn’t like to be told what to do that I have always been. I was still a daughter, sister, friend, neighbor, still a stranger. I was still me, so it seems.

And yet …and yet. Things just changed. Some things will never be the same. I’ll have this fear of recurrence, and this responsibility, to check out everything that happens to me, for the rest of my life. I’ll have the knowledge that the “rest” might not be that long. But ultimately, I think if I could choose one thing that I wish I had never lost, it would either be my old sexuality or the ability to sleep. Isn’t that funny? Not the breast, or the hair, the eyebrows (those are coming back! Along with the lashes. I’m on my way to looking halfway normal someday). Those things seem less important. You can say it’s frivolous, but I wish sex was as easy and awesome for me as it always was, because now I know what it is like for many women, and now I know how special it was, that thing that I had, and it was mine damnit, not Gabe’s or anyone else’s, and while I haven’t entirely lost it and I still function normally under the general definition, I still wish I had it back. I also have not had a decent night’s sleep since April, for various reasons. I still have hot flashes all the time (I had one during radiation this morning), and the other night I had five an hour again, and was so desperate for them to stop that I lay in bed crying. It’s possible that menopause will reverse for me and these things will come back, especially the sexuality part, but the sleep probably never will. Just as no mother ever sleeps so lightly again after her children are born, just as I have never slept soundly since breaking my hips meant lying on my side for more than a few hours would be painful, cancer makes your mind race in ways that makes sleeping soundly a challenge.

There have been things that happened that were too painful to write about in the blog at the time that they happened, though now I see them more as chronicles of what chemo does to a person than something personal that happened to me. Two things come to mind:

The first time we had sex after chemo, at my insistence since I wanted us to be normal, I vomited afterwards. It was just too much for my body to handle. I still had a high sex drive then, and the experience itself was normal too. I just felt so sick afterwards, I could barely stand. Now, I know how it touched people to read about Gabe shaving my head. At that point, we had already had some memorable times of warped emotional intimacy, as evidenced by him standing naked in the bathroom talking to me while I puked after we made love. Talk about fucked up.

Another time, I took off what I thought was a piece of food from one of my teeth while I was brushing. It was actually a big piece of my gum. I had to go to an emergency dentist visit for that one. It turned out to be fine, and the gum eventually regenerated, but I was so disgusted, I almost quit chemo right then. At those two moments, I really did feel at war with myself, that my body was rejecting itself, and that is a feeling that is almost impossible to explain to someone who hasn’t been there. I had been there before—why can’t I walk? Why did they have to call in counselors to explain to other kids about me writhing around in convulsions on the floor?—but when I was younger and I didn’t yet know that it was possible for your mind to just not accept what was happening to you.

I have accepted all this, as everyone does. Look, it’s not about strength or moxie or bravery or resilience or anything else. You aren’t given a choice so you do what you have to do—just about everyone in this situation does. But as an adult, you have this nagging sense in your mind that doesn’t accept things. When I was a kid, I just took everything in stride. I didn’t know enough of the world to know different. I looked at today, and that was it. It’s hard to do that when you’re grown, especially when so much of your sense of your own future is wrapped up in your children’s future. What do I need to do to remain as highly functional as possible? To be a good role model of a responsible parent for both my kids, to show my daughter, and hell my son too, what it REALLY means to be a woman, in spite of what society says? To take away from Gabe the difficulty of thinking about how a motherless family would look, and go through what I need to go through to make sure the kids would have what they needed if I wasn’t around? How can I be realistic without being morbid? How can I give others permission to not behave the way everyone thinks you should behave when some bullshit happens?

I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit.

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.

Thanks for reading.

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 Salon.com 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.