Monday, November 1, 2010
Day 179: Hot flash!
I fully intended to write a Halloween blog yesterday, but I was way too exhausted to do anything so productive. We had a great Halloween, and it seemed to last several days. Lenny and Augie wore their costumes for various events 4 days in a row. I managed to avoid one of the kiddie parties due to my current immunity nadir, but I did go to the parade at her school, since it was outside. Then I probably negated any immunity protection I was trying to keep by going on a date with Gabe, out to dinner and then to a movie at the most germ-infested place on the planet, a mall. I'm glad that I didn't do a lot of hanging out at malls as a teenager. It seems insufferably boring. There were kids literally sitting on the sticky floor in the hall, texting each other. Really? Even Denny's was better than that. Denny's was pretty fun, actually.
Anyway, we went to a Halloween party on the block on Saturday and I managed to stay out until...6:30. Then Augie and I went home. I was completely pooped. And trick or treating was a lot of fun, even though Augie stayed in the wagon most of the time. He loves Halloween--everything about it. He loves pumpkins, and skeletons and monsters, kids in costumes, all of it. Between that and the fact that this wordless child clearly says "baball" as soon as we turn on the world series--I mean before there are even players on the field and the announcers are still talking--there is increasing evidence that he has, in fact, been here before.
If only I believed in that kind of stuff! That would be a nice comfort in these circumstances. But back to Halloween. For the party on Saturday, Gabe and I went as Britney Spears and KFed (in his skinny days). We had to explain the costumes, but it worked, I think. It would have been better if it wasn't so cold that Gabe needed the hoodie over the undershirt (I refuse on principle to say "wife beater"), especially since he had the boxers hanging out. And I ended up with a jacket on over the schoolgirl outfit, which kind of ruined the effect. For Halloween itself I was just mod, because it was too cold to go bald.
We had so many trick or treaters that we ran out of our 10 bags of candy by 5:15. It was crazy! People come in vans to this neighborhood to trick or treat. That's fine for the most part, as this year the majority were kids with costumes. But I don't have a lot of patience for teenagers wearing normal clothes pretending to be some rap star or vague celebrity. I dressed up for Halloween once as a teenager and went trick or treating with my boyfriend for about 5 minutes. We just did it for fun, but we did have costumes, and we got a few pieces of candy. I would have felt weird going to a bunch of houses with a huge bag of candy at age 15. So I'm the rude mom who chastises the kids and sometimes refuses to give candy if you don't have a costume. Luckily, Gabe was the one handing out most of the time.
None of this blog is particularly enlightening, I realize, but that's because I think I finally have chemo brain, but it's not chemo brain at all. I'm losing my mind from lack of sleep. I fell asleep at 5:30 this morning, only to wake up an hour later when radiation called to say their machine was broken and I might not be able to come in. I waited over an hour for radiation last Friday. Since I only needed xrays the first day (and I'll get them once a week), all the other days were 5 minutes of treatment. But I feel like I wait forever, and I'm the youngest person there by decades. Cancer treatment is just not made for the young or for anyone who has to do anything else with their lives. They are under the impression that I'm still working, and I'm going to keep it that way, or I'll never get out of there. I have a husband who has to get to the train, two little kids who have to get to daycare. Our mornings are the same panicked rush that anyone has when 4 people need to get 4 different places by 8 AM. It's especially hard when I never get up early, since I fall asleep around dawn. I would like to stay home with the kids sometimes, since that was one of the points of me going on disability, but to do that, Gabe needs to stay with them until I get home from radiation. Since we are less than 5 minutes from the hospital, he should be able to get the 8:30 train if I do radiation at 8. Forget it. I didn't get home today until 9:15. He would have even missed the 9:20 train at that time and would have had to take half a day off of work. Last Friday one of our cars was in the shop so he was walking the kids to school--I had to call from the hospital phone (no cell reception in the basement, and all radiation departments seem to be in the basement) to tell him I wouldn't be home.
It's getting on my nerves. This is supposed to be the easy part. I've just learned that all the radiation patients from another hospital have been transferred to my hospital while their facilities are modernized. Really? During the exact 6-7 weeks I'm doing radiation? Sigh. I don't mean to sound like a complainer, or maybe I do. I'm in a complaining mood right now. Today I talked with the older man who always goes before me. They finally let me go before him this time, since he said he had nowhere else to be and I had already waited more than half an hour. While I think that everyone's time is valuable, I did appreciate that. I actually have a lot of other places to be, even if I didn't work today. I will be working some days, so I can't wait around forever, and if I am going to be waiting, I could be driving my kids to school so my husband actually gets to work on time.
Anyway, I learned that this man--a sweet old guy who is hard of hearing and has a heavy Irish brogue--has breast cancer too, and it spread to his lung, since he had no clue that men can get breast cancer and he didn't get it checked out until he felt a pain in his shoulder. Another woman who I see there every day is probably in her late forties and has breast cancer as well. She has all her hair. She is stage two, and avoided chemo. She kept trying to tell me that at stage one I shouldn't have to do chemo. Who is my oncologist? Did I take this test? And on and on. I said about a hundred times, I am triple negative. It doesn't matter what stage I am and they didn't do further tests, because I had to do chemo no matter what. I wanted to say, you don't know what triple negative is? Look it up! Let me read the paper!
And when I almost snapped at this lady who is also going through cancer treatment I realized just how damn tired I am. I literally have three hot flashes every hour at night. I get soaked with sweat. The cruelest part is that I usually have a hot flash at the exact moment that I'm falling asleep. I'm convinced that hot flashes have something to do with the body's metabolism, and how that interacts with hormones, when things start to shut down for the night. I have them during the day too, and they are especially bad when I try to take a nap, so it has to have something to do with the body at rest. I am exercising less these days because I am not going to the gym at work and I can't do water aerobics, but I am walking about an hour a day and I'm doing some weights and toning exercises four days a week at home. This is supposed to help, as is acupuncture, but nothing is working. I started vitamin E again today, since I'm done with chemo and the bleeding that it causes shouldn't be a problem. I stopped taking beta blockers, so if there was anything I could take for this, I think it would be fine. But I can't take anything with estrogen, even though I'm triple negative, and that includes soy. For most women with the extreme hot flashes I have, there is some relief. There's also the fact that it is happening to them 15 or 20 years later, so they don't have little kids at the time. How can I simultaneously have an infant AND menopause? It is so hard to work or behave like a normal person, though I try.
And it's so different from other kinds of insomnia. I can try to relate to people my age by comparing it to the insomnia you get at the end of pregnancy or the tiredness you feel with a newborn. But it's really pretty damn different. There's the tiredness from being in cancer treatment, having gone through four months of chemo and jumping into an annoying radiation routine. That is heavily compounded by getting an average of about 1.5 hours of sleep a night--total. Last night it was less than an hour. I took an hour long nap this afternoon after trying unsuccessfully to go back to sleep after radiation. How would you like two hours of sleep a day? With a newborn, you might not get a lot more than that, but you know what? You also are taking care of a newborn, and you're probably nursing. They are adorable and warm and you're doing something wonderful. Even the uncomfortable end of pregnancy is still worth it for what you get in the end. This is just some residual bullshit from the poison I had to take for CANCER. What I would give for those sleepless nights when I was nursing Augie. I sure as hell can't do that anymore. This is just depressing.
I hope to hell these hot flashes go away, even if menopause doesn't. I really hope that goes away too, because I hate feeling old. After trick or treating we were having pizza with some of our neighbors. I must have been bright red because someone asked what was wrong. Oh, I'm having a hot flash. Uh-huh. Is that a normal thing to have to say when you're 35 and there are a bunch of little kids running around? It's not like they're my grandkids. Sometimes I feel like these pictures of me, or my public persona, is someone else entirely. On days like today I just feel old. I have cancer. I'm bald (well, not really, but to me this fuzz looks even weirder than my cueball--there's always something else to get used to these days). I'm in menopause. I have hot flashes. I probably can't ever have another child. I worry about dying.
So this morning after not being able to sleep, I just cried. I don't do that much anymore. I just felt so tired and defeated. Maybe hormonal too--who knows? But then I reminded myself that yesterday was still a good day. We had a lot of fun. Gabe and I have managed to spend time together recently, on dates, at home, and I'm getting used to having a normal sex life again even though I'm a little different. We've figured it out and are almost like we used to be in that regard. We saw our friends, the kids had a great time, I made pancakes in the morning. Even on days like today I do something productive--I made dinner and I made a new quiche recipe for our breakfast tomorrow. I'm getting nothing else done though, as I try in vain to nap, and I spend my waking hours of productivity either cooking or exercising.
So even on bad days, there are still good moments. My quiche was awesome. They were really nice to me at the deli. There wasn't a cloud in the sky. Augie fell asleep pretty easily and Lenny was done with her dinner before 6, a new record. But this deep tiredness threatens to make it impossible to truly enjoy these things.
At the same time, even on the good days, I have bad moments, like admitting to my hot flash while eating pizza, which seems absurd and surreal even now. At the party on Saturday a little girl just walked up to me and stared. She stood her ground. I looked back at her until her mom asked if she was staring at me. Yes, I said. I'm used to it. I wanted to say, what, haven't you ever seen a bald lady before? Honey, it's not that interesting! But I didn't. I just laughed. What can you do?
I'm so used to my bald head that I'm surprised when anyone reacts to it at all. A guy who used to live on our block and who is also bald (on purpose) was walking with us while the kids trick or treated. He said he wanted a picture of me and him together, now that he learned I was growing my hair out. Why are you doing that? Why don't you just cut it if it's growing? It looks good that way. I've been doing it for 10 years. I thought, huh. He knows what I looked like before and is surprised that I want to have hair again. Interesting.
I don't want to politicize my blog but I'm continually fascinated by the different reactions I get from black folks and white folks about being bald. White people seem to either think it looks strange or if they compliment me they say "you have such a nicely shaped head" or something and then say it looks great. I get many more compliments from black folks, and it's usually something like "I like your hair," or "that's a good hairstyle for you." Several black women--total strangers--have told me my hairdo is sexy. Do you see this subtle difference? It's just a hairstyle, being bald. There's no hair but that's no matter. To white folks, it's a bald head. Important? No, but interesting. I didn't choose to be bald, but I guess if there's nothing to be done about it, I can at least learn a little bit about how people see the world by their reactions to seeing me with my baldness. It's kind of like learning how people view things by seeing how they react to someone having cancer, having seizures, being in a wheelchair. These things are not preferable to the alternative, but perhaps in my increasingly fewer moments of clarity and reflection, they are more instructive.
On that note, I hope people are voting tomorrow. I voted last week. Chicago and Illinois are going to hell in a handbasket, and I don't know that any of us can do much about it, but we should do what we can. Since I live here, maybe I can actually vote tomorrow. That would only be twice--it's probably even legal.
Good night--at least it will be if I can sleep a little. In the meantime, go Giants! It's the seventh as I write so that 3 run homer just happened. I wish Augie was awake. Baball!!
Posted by Katy Jacob at 7:36 PM
Labels: bald, breast cancer, halloween, hot flashes, insomnia, marriage, menopause, motherhood, radiation, triple negative
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Oh man... *sympathetic sigh*...You sound tired. I can hear your voice in my head when I read your blog, and I can hear how frustrated and tired you must be! Ungh. If I say "hang in there" one more time, I think I may have to slap myself, so I'll just say this: (1) you are a good person for just laughing through the little girl all up in your grill during your hot flash; (2) if you see that woman again who feels the need to interrogate you about the justifications for your chemotherapy, just go ahead and let her have it. I don't care if you're an absolute saint, you don't need that.ReplyDelete
You guys all look great in your costumes - I'll try to post a pic of me and the kiddo when we went trick-or-treating.
Katy, I think that this is what the cancer survivors talk about - when you're in that twilight zone after the treatment is over and there's nothing to do but wait. Wait and see what the new normal is. Wait and hope that cancer is gone for good. Hope that the least pleasant side effects diminish over time. But you're not someone who just waits around - and every day you are still doing things in spite of the tiredness, in spite of the hot flashes, in spite of the stares at your sexy bald hair or the virgin fuzz. Just think - those hairs growing on your head now have never been nourished by your body while it had cancer. It is the first evidence of your survival, your recovery, the promise of all the good things to come.ReplyDelete
I remember when you were first diagnosed; I said to you that it felt like all the promise in life had been taken away from us. I was wrong... but, and this is especially true for you in the months to come, there's still this overshadowing out-of-the-ordinary experience. As your recovery continues there are going to be hiccup moments when you're thrown back to the bleak times - just when everything was starting to seem normal again a scary reminder might rear its head. I don't think these bad times will last long, but I do know that we'll still need the friendships and support that we've been so lucky to have these past many months.
We just have to keep making the best of it as we go along. I very much appreciate your documentary of your experiences in this blog. As an anecdote of note, I want to mention how both the kids seemed to relish giving out candy - esp. Augie with his stooped old man gait, carefully reaching into the bowl, grabbing a candy in his little fist, turning and extending his arm up into the lowered candy bag, and carefully releasing the candy inside. And repeating this tirelessly for each child that came by, with the same care and excitement and a twinkle in his eyes. That boy knows a thing or two about happiness, with simple needs and his exlamations of "Elta" at each skeleton he sees. We have to enjoy these moments and absorb them to enjoy their memories' warmth when cold fears worry our minds.
When you got hit by a car as a little girl you had to learn to walk again; maybe with cancer treatment inducing menopause you'll have to learn to sleep again... but you'll get through this too. And you function better on little sleep better than anyone I've ever met. If I were in your shoes I'd be a half-comatose bear-zombie snarling at everything in my path.
I love you. g=