Nobody over the age of five should EVER use the word “boobies.” Or “ta-tas.” Good lord, have some dignity.
Certificate of Completion
You’re supposed to be happy when chemotherapy was over, but I just felt anxious. The hospital has a bell you’re supposed to ring when you finish your last treatment. I couldn’t do it. I appreciate the idea of having some kind of ceremony to mark the end of a difficult period, but it felt like tempting fate to me to announce that anything was over. I just shuffled out awkwardly, hoping nobody would talk to me. I went home and waited for the side effects to hit.
The side effects from chemotherapy are cumulative, so each successive treatment hit me a little differently and a little harder. I wasn’t as depressed after the later treatments as I was after the first one, and I had learned how to manage the nausea pretty effectively. I never felt entirely well, but it wasn’t agonizing either. Mostly, chemotherapy was like having a hangover that didn’t go away for a couple of months.
The hardest was the fatigue. Much of the time I felt like I was moving through a pool of warm mud. It was summer, of course, and humid, as usual. Everything was slower and heavier. It hit faster after the final treatment, and took longer to fade. It was probably four weeks after the last treatment before I could make it through a day without napping.
The other thing was the stupidity. Chemo brain is a real thing. Ever try to take a test with a hangover? It was like that for a few weeks. I kept mixing up words. We went to lunch one day and I ordered a burger with mushrooms; my husband had to remind me that I hate mushrooms and I meant to say pickles. I forgot the word for pickles. How weird is that? It’s not big or important, but typical of the kind of constant little reminders that never went away. I could never forget that I was sick, because there was always something I was trying to remember or say and I couldn’t quite get it out.
I kept missing my turns when I was driving. Eventually I decided not to drive any more than I absolutely had to. Several times I pulled window shades off the wall while trying to open or close them. It was like I was a big, clumsy, bald caveman. Oh God, I just realized. I was just like Homer Simpson. It’s exactly what my daughter predicted when I told her my hair was going to fall out.
I had to stop working for the duration of treatment. Even if I could physically sit in front of a computer for a few hours a day, I wasn’t confident enough in my brain to be able to practice law. Being self employed is a mixed blessing here. I can take all the time off I want, but I don’t get paid for it. Of course, the job I left three months before being diagnosed had a nearly infinite amount of paid sick leave, but that’s water under the bridge.
So when I was finishing the last treatment, I still had weeks of side effects in front of me. Just getting the last round of medication wasn’t really the end of anything, other than going to see the nice chemo nurses and eating snacks while watching the boats float down the river through the windows of the chemo lounge. It’s kind of anticlimactic really. Your life is framed around this big hairy thing – chemotherapy – for months, and then it’s done, but you’re still sick and it’s like – what just happened?
There’s no Certificate of Completion here. I had four chemo treatments because statistics suggest that is the right amount of treatment for the kind of cancer I had. Or should I say have? It’s not like chemo is a magic wand and afterwards, bibbity bobbity doo, you’re healed. Do I still have cancer? There’s no way to know. I’m not showing any signs of it, and I’ve done everything I can to get rid of it, but it’s like cockroaches. You bomb and you spray and you think you’ve gotten rid of them, and then next time it rains they’re crawling all over your drawers.
Here’s the kid drawing pictures on my head.
And here’s a poem she wrote.
Chemo Selfie #3 – The Chemo Job
Are we there yet?
I kind of resist the euphemism for having cancer as “being on a journey.” Journeys are fun. I love to travel. I love long road trips. Sure, there are journeys in my past that, in hindsight, I’d have rather not taken (like towing a boat from Louisiana to Canada, for example). But in general, going on a journey is a good thing to have done.
On the other hand, I don’t think anybody can honestly say they are glad they’ve had cancer. Yeah, I’ve read a bunch of blogs where people say they’re grateful for their cancer because it made them learn so much about themselves / become closer to their families / get closer to God / bla bla bla, and it’s nice that they’ve made their peace with a crappy situation in such a positive way, but I don’t think that is the same thing as literally preferring to have had cancer than not to have.
Let’s not kid ourselves, even with the best possible treatment outcomes, just having had cancer is like a scarlet letter over our health for the rest of our lives. We cannot expect to have the same life span that we would have sans-cancer. This is not a journey that gets us right to where we want to be. It’s a detour from our lives, to be sure, but not a positive one. Even the crappiest road trip when you get lost in West Texas and spend 18 hours straight on the road with whining kids, an obnoxious co-pilot, and a dog with gas is better than having cancer.
I’m looking at it more like having the crappiest job I’ve ever had. It’s time consuming, sometimes boring, makes me feel bad about myself, and ultimately leaves me with nothing useful to put on my resume.
This shit’s getting old.
SCACNE!
Call me Shakespeare, I invented a word. It’s SCACNE! It means SCALP ACNE. Did you know this is a thing? I had no idea this was a thing. Maybe some of my guy friends have been keeping it a big secret, but I, for one, feel ripped off.
So I’m taking this medicine that makes my hair fall out, in exchange for not dying. This seems like a pretty fair deal to me, especially considering that the medicine is only for a couple of months and not dying will hopefully last for decades. Really, hair is the least of my worries, right? But when I signed on for this, I did not know about the scacne. I expected a shiny round dome of a head, suitable for decorating with temporary tattoos and washable markers. Instead, I’ve got stubbly patches punctuated with red spots. What the hell?
I should clarify that I’m not messing with wigs at this point. Wigs are hot and itchy, and I live in Louisiana. These three things do not go together. I might yet get a few wigs for fun, especially when the weather cools off, but really by then I’ll be growing my hair back anyway. I’m not really keen on trying to HIDE my head anyway, as though the chemo is a big secret. I have never in my life succeeded at keeping a secret. Wearing a wig would be just waiting for some embarrassing mishap to occur. Wearing a scarf on my head is more like announcing, “yeah, I’m bald under here, you got a problem with that?”
At five days since my last chemo dose, I feel like generalized crap. The side effects are cumulative, which I hadn’t really considered the first time around, but now of course I get it. The crappy feeling started sooner after the this dose, and has been a little stronger than the first time. It’s not the sickest I’ve ever been or anything, it’s more like a lingering hangover. A hangover that came with scratchy baldness as an extra souvenir. You’d think I just got back from the best vacation ever, right?
Another surprise I discovered is a dent on the left side of my head. I suspect my older brother knows more about this than he’s telling me.
And did you know the muscles on your face wrap all the way around to the back of your head? So like, when I smile, the same muscles that make creases in the skin on the front of my face are making more of the same on the back of my head? My response to learning this was: “ARE YOU KIDDING ME I HAVE WRINKLES ON THE BACK OF MY HEAD?” I mean, what kind of bullshit is THAT? I think I can officially say with confidence that the skin cream peddlers are selling nothing but snake oil, because if the back of my head has wrinkles without having seen the sun in 40 years, ALL THOSE YEARS OF MOISTURIZING HAVE BEEN A LIE!
Sons of bitches.
Sometimes
God, this whole thing sucks sometimes. The kid knows I’m not feeling good, and she tries really hard, but y’know, autism.
She just doesn’t have the reserves to control her frustration when her routine is disrupted sometimes, and I don’t have my own reserves to help calm her. She starts to cry, and then I want to cry, but good lord that’s the last thing that can happen ’cause if I start to cry she will completely fall out.
We all try to wear a happy face, but the mask gets cracked around the edges sometimes.
Thank God my husband is a hero who can save the day while I’m down. They’re on the way to swim class, while I sit here and feel morose.
Just keep swimming, just keep swimming.
What Chemo Day is Actually Like
I thought it would be helpful to give an actual walk-through of what the day of chemo treatment is actually like. It’s not as dramatic as you would think, especially if you’ve been watching one of the TV shows ripping off “The Fault in Our Stars” with cancer as the backdrop for romance and adventure. (I’m looking at you, Hallmark Channel. You should be embarrassed.) If this level of detail is boring to you, just skip this post. It won’t be included on your final exam.
Chemo Selfie #2: Chemo Diva
Yes, this is how I look all the time, and I’m wearing sunglasses indoors to reduce the glare from the overhead lighting, not to hide the circles under my eyes. Not that I would ever have circles under my eyes, mind you. I’m just saying.
I had three appointments scheduled for the day, each an hour apart. The first, at 7:45, was with my oncologist. I’m really lucky I live close to the hospital because I would never get to an appointment that early otherwise. Now that I’m in chemo, I’m going to the cancer center building instead of the breast center. The cancer center is all chrome and modern, without the feminine styling of the breast center. It’s still a step up from the bleakness of the main hospital building. Thanks cancer center donors!
I met with the oncologist in his office, told him all about the side effects I’d experienced after the first chemo dose, which he reassured me were totally normal. Asked a few questions about the hormonal treatment that will follow chemo (five years of chemical menopause, yay!) and which over-the-counter meds I could take if I need them. He gave me a quick look-over to make sure there weren’t any suspicious lumps coming up around my fake boobs — ’cause that can happen, but it’s not, so that’s good. He listened to my lungs and heart. Everything seems normal enough.
He sent me on to my next appointment, two floors up at the lab. He needed them to take some blood so they could check it for… something… and adjust the dosage on my chemo meds if they needed to. (They knew what to check for, I don’t need to micromanage.) The lab stations are partitioned off so you have some privacy while they poke at you, and the chairs are comfortable. This is the luxury of going to a nice hospital.
Lies I Tell Myself
Eight days after my first dose of chemo, I decided I was done with it. I’d felt sick for a week. It wasn’t terrible sick, just a low level of nausea and headache that never went away. Fatigue was, in a way, a blessing, because when I slept I got a break from feeling sick. Eventually though I hit the limit on how much I could sleep, so I was left with insomnia, fatigue, nausea, headache, and relentless boredom. I was too sick to go anywhere or do anything, to blurry in the head to read or write, and completely worn out on watching t.v.
I would not say that I’ve been upbeat about having cancer. Having cancer totally blows. I am, however, an exceedingly practical person. I had to swap out my boobs with fake ones and take on 12 weeks of chemo to stay alive, so that’s what I’m doing, without a whole lot of navel-gazing about “why me?” and “what next?” Weeping and carrying on doesn’t do me a whole lot of good, so I try to avoid it. I make sarcastic comments instead and joke about the hilarity of prosthetic nipples. It’s how I manage.
That said, by that eighth day I did not think I could do this for another eleven weeks. I began to doubt that the marginal reduction in the risk my cancer would come back was really worth giving up this summer of my life (and my daughter’s life, and my husband’s life) to side effects, boredom, and depression. So I made myself a deal.
I’m done, I told myself. I told my husband the same, with the coda that I didn’t really have to decide about going back for the next dose until the day it was scheduled to take place. I knew if I didn’t go back for more chemo, I’d start feeling better, and the whole thing would be over. For this year, anyway.
The next day, I did start feeling better. I found I could go longer without the nausea meds, and without those meds I didn’t get the headaches. The fatigue started to fade. By the next week I was not entirely back to myself, but I was someone I could live with.
I don’t doubt that part of the reason my side effects started to fade was that I had given myself permission to quit if I had to. I didn’t have to look at chemo as a 12-week sentence that I was only one week into. Without the dread, I could manage again.
Of course, I was lying to myself the whole time. I still am. If I really believed I’m not going back for the next dose I would have told my oncologist, cancel appointments, etc. I would have admitted that I was giving up on the best chance of staying healthy for my family because I can’t deal with temporary discomfort.
The lie helped me get through the worst day, and to stop dreading the rest of the chemo course. Now that it’s a few weeks later, I can see the side effects did get better. I got through that day, and I can get through it one more time.
So I’ll go again tomorrow, for dose #2. I’m not making any promises about the doses after that though. If it sucks too hard, I’m done with it.
Five things that suck about chemo that AREN’T the things you think will suck about chemo
1) Your hair will hurt before it falls out.
In and of itself, hair loss isn’t that big of a deal. Hair grows back, right? But before your follicles give up and let go of your hair, they fight a valiant battle against the chemicals shutting them down. This makes your scalp crazy sensitive, like each hair is a tiny needle stuck into your skin every time it moves. After a few days of this, you want the hair to hurry up and fall out already. What actually happens is:
2) Your hair doesn’t all fall out at the same time.
It’s hard to tell why some patches fall out first, but with me I had bald spots on either side and a jagged bald line down the back of my head. Rather than leave piles of hair behind me everywhere I went, I had John buzz it all short as soon as it started to fall out. This looked kind of cute for a few days, until the shedding started in earnest. The other crappy thing about this is that:
3)Your hair conspires to make you look older.
Before chemo, I had thick brown hair, with a few grey streaks. There wasn’t enough grey showing that I even bothered coloring it. But lo! Those few grey hairs were the tough guys on my head, and now the wimpy brown hairs have fallen out, leaving only the grey ones behind. So now I’m patchy AND grey, which is every bit as sad and depressing as it sounds.
4) You actually gain weight.
Now, this doesn’t apply to everybody, but apparently it’s really common among women being treated for breast cancer. There are wonderful drugs available now that reduce the terrible nausea that chemotherapy is known for. This is terrific. The down side, because there always is one, is that these some of these drugs can make you constantly, ravenously, hungry. Even aside from those drugs, chemo makes you feel enough like crap that you aren’t going to work out. In fact, the only thing you have enough energy to do is to eat, sleep, and watch Netflix. End result: chemo is not the unlucky girl’s diet plan after all. Adding insult to injury:
5) Food tastes weird.
A few days after my first chemo dose, I was feeling low so I went for my comfort food, ice cream and diet coke. (Don’t you judge me, I have cancer.) But damn it all if my favorite treat didn’t taste like… nothing. It’s like my taste buds went on strike. Later I found some foods still had flavor, but it wasn’t always the right flavor. Most notably, a grape lollipop given to me by my daughter tasted like feet. A lot of the time my mouth just has a metallic taste that won’t go away. It’s not a crushing side effect, just a constant, pesky one that lets you not forget for one second that you are undergoing chemo.
Chemo Selfie #1
Today went fine. The cancer center overlooks the Mississippi River and I could watch the ships go by. There was an entertaining group watching a world cup match in some other language and I enjoyed their enthusiasm.
I had a little bit of a headache right after the cytoxan, but it didn’t last long. Had dinner with my husband and kid at a Thai restaurant right afterwards. I was starving, even though I’d had a good breakfast and lunch. Thanks, steroids! I’m trying to pace myself so I don’t eat all the snacks in the house, too.
I feel a little flushed now, but my temp isn’t elevated to the point they want me to call in. I’ve got some mild tingling in my hands and feet too. It doesn’t bother me, but now of course I’m worried about neuropathy. I know the doctor can reduce my dose at the next infusion if they need to, but I’m worried that might make the chemo less effective.
Chemo preparation
I went shopping for chemo supplies, and wound up with makeup, gummi bears, and a Wonder Woman t-shirt.
I guess it’s good that cancer hasn’t changed me.
Snark for the Cure 