That’s what I’m in right now, a crisis. A marathon of a crisis. Six months of chemotherapy and maybe surgery after. A long time, a half a year at least, almost the gestation period of a baby. Or two.
After a few good days and the ability to keep my spirits through the chemo blahs last week, I suppose I’m due for a crash. Add to that two things that complicate life this week, and it’s two things too many.
I’ve been taking a sleeping pill for about two months, 10 mg of Zolpidem. I started it because I had insomnia. I would lie in bed, staring at the ceiling, anxiety skyhigh, thinking about my cancer and and my kids and my husband.
“Take this,” said my doctor. “You can’t become addicted to sleeping pills.”
Well, she was sort of right.
The insert said that after about a month and a half, if you take it every day, it stops working. On top of that, there’s rebound insomnia that could happen for 1-2 days after you go off.
Everything was great for those two months. Pop one in, go to bed, sleep through the night. No worries, no bad dreams.
Friday night, which is chemo day, the sleeping pill stops working.
It’s sort of amusing because I feel drunk after I take it. I lie in bed for a bit and then decide I need to go make popcorn in the popcorn maker with melted butter. (None of this microwave crap for me, ever, now that I’ve tasted fresh.) I text with Writer Wendy (as opposed to Sister-in-Law Wendy) about some entertaining writer gossip and/or our latest works-in-progress. I finally go to sleep after midnight sometime.
The next day, I’m tired but okay. The problem isn’t that day. The problem is…
Worst Day After Chemo Day.
That night, I don’t take my sleeping pill. It’s not working anyway, so I know it’s going to be a long night. The exhaustion kicks in around suppertime. My body feels so heavy. I sleepwalk through the rest of the evening. I lie in bed.
It’s 10 p.m.
Then it’s 10:30.
Then it’s 11:00.
My brain doesn’t stop. I’m feeling cheerful. Then I’m feeling morose. I’m going to beat this. No, I’m not. I should get up and do something. I should lie in bed. I can’t; I’m too tired. I can’t fall asleep; I’m trapped.
I fall asleep sometime after that. Kevin comes to bed at 2 a.m. He starts snoring. I consider going downstairs and sitting on the sofa.
Somehow, in my sleep-deprived, drug- and lack-of-drug-induced state, I feel like I need to stay there. I need to punish myself, maybe? Or try to sleep? My motives are not clear.
I finally fall asleep and wake up at 5:30 starving. I go eat a bowl of cereal, chewing mechanically as I sit on the couch, shivering and feeling alone.
I go back to bed. I sleep for a couple hours.
The next day is hell. I can’t nap, either. My brain is awake. I’m in a fog. I don’t have to go anywhere or do anything, thankfully, because I am a wreck.
Today is the worst day for this, yet I’ve not slept more than three or four hours. Last week, I slept twelve hours before my Worst Day After Chemo Day, and I still felt like shit.
I should have gone off the sleeping pill earlier. Why am I so hard on myself? I should have done this last week when I was feeling good. How could I have predicted it was going to stop working at the exact wrong time?
Whenever I get tired, my jaw pain goes up. The percocets and ibuprofen aren’t enough for Sunday. Pain makes me worry that things aren’t going to turn out, so I keep thinking it means something. What if they get all the cancer, but they can’t fix my jaw? What if I have this much pain for the rest of my life? How am I supposed to cope?
The worst time is between 1 and 4 in the afternoon, every day. I feel like I’m crawling through mud, gunk smeared across my skin, over my face, in my belly, my legs, inside my torso. I lie in bed, staring at the clock. It’s 2:02. Now it’s 2:03. Now it’s 2:04.
That’s p.m. I’m barely making it through the afternoon.
I can’t help with the babies or Morrigan. I feel guilty for staying in my room half the day: they’re barely going to remember that I exist. They’re going to prefer Grandma and Grandpa and Daddy to their own Mommom.
Never mind that simply walking in front of Phoenix elicits a smile from her. Never mind that I can get Calliope giggling with my, “*sniff* *sniff* Ooohhh, stinky baby!” routine.
When Morrigan asks, “Will Mommom play upstairs with me?” I tearfully say no. I have to pee and I haven’t been able to get up off the couch for an hour. I most certainly can’t go play in her room with her.
Evening rolls around. I start to feel better. Oh, now everything is fine. Now I’m ready to get up and conquer the day, at 8 p.m. I try to help with Morrigan’s bedtime, but she wants Daddy to do it.
That night, I tuck myself in, ready to face a long night. My brain has ceased functioning long ago, emotions and fears my only reality now.
I fall sleep around 11 p.m., and I sleep most of the night.
I don’t know it when I get up, but I have one more difficult thing to conquer.
I signed up for a support group on Mondays and rearranged my entire chemo schedule around it. That’s why I’m going to treatment on Fridays: Hearth Place has a “newly diagnosed” group that meets from 10-12 every Monday for several weeks. As long as I’m in treatment, I’m eligible, they say, although because mine was metastasized, they had to get approval.
Getting near the Hearth Place makes my anxiety go up. I don’t know if I’m emotionally vulnerable and feeling the raw sadness of everyone who goes through that place, or if my awareness of where I am is making me upset. As soon as I set foot inside, I feel like I’m going to cry. Although I’m sure the volunteers who man the front desk have experience with crying patrons, I hold it in and go into the big room where we’re meeting.
I take a seat on the couch. A few women are already there. They come in one at a time, although a few seem to know one another. Or maybe they’re just good at making new friends.
Not me. I’m trying not to cry.
When the session starts, the leader goes through the ground rules. One of them is that what happens in group stays in group, so I don’t want to say anything specific about anyone.
I will say that this may have been a mistake.
They’re all in a difference place than me. They talk about tubal and ductal lumps, calcification, whether or not to get mastectomies, and their numbers. Some of them know every week what their white blood cell count is or platelets.
By the third woman, I start crying. I feel guilty. I mean, I’m crying because… Because why? I can’t even say, and that makes me more embarrassed. It makes me cry more.
“If I do this one procedure,” says a woman, “it has a 20% chance of recurrence. But if I do this other procedure, it’s only a 5% chance.”
But nobody gave me choices. They said, “You can’t have a mastectomy.” They said, “You’ll do this treatment, period.” They said, “Other people who have done this treatment have lived for years, but you will be on this for your whole life.”
The problem is there’s a wide variety of interpretations from that statement. Yes, women have lived for fifteen years since Herceptin was introduced. Actually (I think it’s okay to talk about this?) one of the leaders is coming up on her twenty-fifth year and she had two lymph nodes involved in the cancer.
There’s every reason to believe I’m going to live.
Still, being on an every three-week regime of something, anything for my whole life feels fucking scary. I mean, when I think about what I think they’re implying, it feels like, hey, I’m going to be doing this for sixty years and that’s scary! But that’s not what they said. It could be… one.
Crashing into that worry is that I jumped over all of what these women are going through. I didn’t have to decide between cutting my breasts off and having a lumpectomy and radiation. And who the fuck wants to decide that anyway?
I think to myself, I’m lucky.
And then I think, No, I’m fucking not. How could I even think that for one second?
We’re to the fourth woman, and I wish I brought my Ativan. The mean butterflies are back. I’m crying because I’m staving off a panic attack. I don’t know how I’m going to tell my story. Mine is worse. I win, guys; let me just tell you about this.
Except, I don’t want to win. The shittiest prize in the universe is the Snatched Closest From Death–So Close We Don’t Even Know If You’re Going to Live Yet–Award.
A few more women tell their stories. The woman next to me starts crying, and I start crying again. I don’t even know these people, and I’m crying because of their stories. But I’m doing it for me, and it feels so selfish.
Ten-year-old me would have been astounded to know that my panic attack didn’t come from having to talk in front of a roomful of women. I guess there is something worse than public speaking.
All of the things I was afraid of two months ago come roaring back. I don’t understand half of what they’re saying. It astonishes me that some of them were initially diagnosed as not having cancer–God, I thought it was black and white. They tell you that you have a lump, they tell you that you have cancer, and then they treat it. Maybe there is also something worst than finding out you have a metastasized breast cancer tumor in your jaw.
I blubber out my story. It’s terrible, the worst version of it I’ve ever told. I start with the twins and end with, “I’m sorry. I can’t stop crying. The cancer is Her2 positive, but it’s partially estrogen, too, so I’m on estrogen-blockers. Plus I just had two babies. I cry a lot now. Please, go on. *waves at the next woman*”
It feels disrespectful to be making excuses why I’m crying. It’s not like I’m sitting there when someone else is crying, going, “God, if she would just stop crying.” But isn’t that what making excuses seems like I’m thinking?
The session ends. I leave. Kevin is waiting outside.
“You know how when we played World of Warcraft, I had all these spreadsheets?” I need to explain somehow why this black cloud is hanging over my head. “Every time I got one little upgrade, I’d go in and update things, see how my numbers were. Make sure everything is perfect. Yeah. That’s how I feel like I should be with cancer. But… I’m not.”
Instead, I’m waiting and hoping and trusting. I listen to my doctors. I hang my entire life and every important person in it on, “Your numbers look fantastic.” What does that mean? Fantastic for a 36-year-old being in chemo? Fantastic for a disease-free twenty-year-old? Fantastic for the average cancer patient, whose median age is probably in the sixties?
I explain this again to my parents when I get home. “But I don’t want to know what my numbers are and worry myself sick over them,” I say.
“You don’t have to.” My dad looks angry. “I didn’t. I trusted my doctors. I knew it was going to turn out fine.”
And I feel like I’m doing the right thing, but I’m also floating in a void. I’m not scrabbling by my fingernails at the edge, wanting to know every little thing, every little procedure, every little choice. One woman was talking about the research she’s done about this or the other thing, and I’ve banned myself from googling anything cancer-related. I’ve had the willpower–or lack, maybe?–not to look anything up in weeks.
It’s the right thing, isn’t it?
Nothing about this is easy.
Tuesday, I wake up but I don’t want to leave my room. I feel like I’ve been here too long, that it’s a sickhouse as in days of yore, and I want fresh air and wide open spaces. But I sit on the edge of my bed and cry.
I force myself to get up. Go pee, wash my face, brush my teeth, get dressed. Every day, it feels like a monumental struggle, but it also feels like I’ve done something when I’m finished. That small sense of accomplishment is usually enough to send me downstairs.
But the black cloud is hanging over me. I’m so sad. What if I’m not okay? Why did I not get any choices? What if this only works for ten years or five or two? What if I’m perfectly fine but something happens to Kevin or one of the girls? What if… ? What if… ? What if… ?
The biggest question of all is this: if doctors have this magic potion that will cure me, why are they putting these women through all of this? Why are they cutting off their breasts, making them choose between treatments, and talking about recurrence? At diagnosis, why can’t they give them the immunotherapy? Put them on it for the rest of their lives? Be done with all the angst and the tears and tell us that we’ve conquered breast cancer?
I had a dream last night that I was in our bathroom and there was a hole cut out of the floor into the basement. I went to look at it and I almost fell in. I looked down and I could see the whole basement and it seemed so dangerous to have this hole here. Also, being in that corner showed me that the entirety of that wall was sideways, built wrong. In the dream, I couldn’t figure out how the whole house wasn’t crumbling. I almost fell and couldn’t extricate myself.
“I need to get out of the house,” I tell Kevin this afternoon.
We decide to go to the bank. Big outing, woohoo. I have a bit of money from the SFWA Emergency Medical Fund and my company’s Critical Illness Insurance, so we need to talk to someone about getting some returns on it or whatever. It needs to go somewhere accessible but better than our shitty savings account, I guess.
I care about this, but sometimes I wonder if maybe I’m trying to set this all up just in case I can’t someday.
We’re standing at the teller, and I ask to see someone to talk about investments. She writes down my information. She’s very solemn. Is it because I’m solemn? Maybe it’s my head scarf. She asks my phone number and lets Kevin and I know we need to make an appointment.
Next to the computer is a mason jar with pink ribbons and “CIBC’s Run for the Cure!” printed on it. Loose change sits at the bottom. “Help us find a cure,” it says. I once again wonder why, if there’s a cure, or most of one–if I’m going to live–how can they say that they still need to find a cure?
I guess there are people not so lucky as me.
I open up my change purse. My chest constricts and I blow out a breath to keep from crying in front of this poor woman, who just wants to know if we can come back at 10 a.m. on Thursday to meet with someone.
I reach inside. I have a loonie, a toonie, a few quarters, some nickels and dimes.
It’s not enough. And don’t I owe so much more than loose change? It seems disrespectful, in fact, to be dumping all my unwanted money into a jar. I was going to give it all because I hate carrying around loose change, but now, I can feel the teller’s eyes on me, condemning me for only giving $4.85 to an organization responsible for keeping me alive.
I close up my coin purse. “10 a.m. on Thursday is fine.”
“Okay. Here, have a card.”
She hands it to me.
I walk away, Kevin trailing behind me.