I don't know what passes for normal anymore.
This is the eighth entry in a multi-part series. Read the rest here.
A few hours after getting home, I sit down on my couch and begin to sob—the kind of crying where your body heaves with life-altering loss.
Kim, Paula, and Lis take turns spending the night with me the first few days back home. A constant slumber party, a kid's dream version of adulthood. We watch movies, I nap. I don't think I'm that out of it, but as the week goes on and I gradually wake up, I can see that I wasn't exactly with it.
I'm relieved to miss the inauguration the day after surgery, but sad not to be able to participate in any of the marches on Saturday. My friend Mary Beth sends me a photo from DC, an image of me on her back with the words "Obamacare saved her life." I cry. Again.
My friends empty my drains every 12 hours, diligently logging the amount of fluid and sanitizing the opening. They sponge bathe me with care—I can't shower until the drains are removed, which will take about a week. This is love.
I feel so helpless; it's hard to even pick up a glass of water with my right hand. Putting on and taking off clothes is next to impossible. I have to sleep on my back, slightly elevated—not ideal for a stomach sleeper. I can't even lift my blankets off of me, so when I wake in the middle of the night dulled by sleep and pain killers, I can't move. I'm trapped.
I have a hard time keeping track of time. Monday comes and everyone has to go back to work. I'm not ready to be alone, but there's a steady stream of visitors. Days pass.
I'm still sleeping on the daybed in my living room. Too afraid to go back to my own bed.
By day six, I'm barely putting out any fluid into my drains. We call my surgeons and they say I can come in to have them removed. Progress! "Do you want me to do them one at a time or together?" the nurse asks. You're the boss. She pulls them out together, quickly, and it's surprising how little I feel. The plastic surgeon checks on me and says everything looks good. He gives me the okay to shower—quite possibly the best news I've ever gotten—to and start my two at-home PT exercises.
The next day, one week after surgery, I go in to see the breast surgeon. She has good news: the pathology report is back and not a single one of the 20 nodes she removed tested positive for cancer. She's almost giddy—it's the first time I've seen her warm up.
She's unwilling to say that I'm cancer-free, in part, I think, because she wants to be clear that I should still continue with the original treatment plan and do radiation. But as far as she can tell, there is no longer any cancer in my body. I've come to learn that the non-answer is standard—you're not cancer-free, but there's no cancer in your body—but it doesn't get any less frustrating.
I ask about exercise and she says to keep it mild, not to lift my arm above 90 degrees for the first month.
And the numbness?
It might not ever go away. "He didn't go over that with you yesterday?" He is the plastic surgeon. No, I don't think so. She's annoyed. "Okay, I'll talk to him about it."
How bizarre to not be able to feel part of your body. That's not exactly true—I can feel it, sort of like the way you can feel your tongue slide across your gums after the dentist. But I can't feel it.
I go home and notice some fluid building up in my new temporary breast so I email my plastic surgeon:
"Hey Dr. Plastic Surgeon,
I hope I don't sound like a hypochondriac (do all of the hypochondriacs say that?), but part of my right breast got really soft with a lot of give this afternoon (toward the top, near my midline). Almost like fluid moving. The rest feels really firm still. Is that normal? I don't know what passes for normal anymore.
And it's true. I don't. It's so strange to have something so foreign in your body. When I inhale, my breath expands across my chest. My left side fills with air but on the right I can feel it press up against the hard mass of my tissue expander. I hate how it feels. I will never get used to this.
I run out of pain meds and email my doctor. Tylenol is useless, but I don't want to be on Percocet anymore. He suggests a couple of in-between options, but I'll have to go in for a script because they're controlled substances. I'm just too tired. Or the pain isn't actually that bad. I decide to wait it out.
When I'm feeling optimistic, I look down at my chest and see a friendly wink; the eye of my right breast closed, just a moment, acknowledging some great cosmic joke. Other times, it looks like a landslide has taken place on my chest, the tight lift of my right "breast" high above the low, full slope of my left.
My hair is starting to grow back and I'm actually a little sad. I like being bald. The questions have started to get old though.
"Oh, you shaved your head?" people ask, in that gently prodding are-you-or-aren't-you way.
Yeah sure, I shaved my head.
(No, you idiot—I have cancer. What is wrong with you?)
"Did you catch it early?" they ask. Subtext: are you going to die?
(People really ask this. What the fuck is wrong with you?)
We are all going to die. Stop telling me how life is short. It's not. Life is long, a million different moments. Don't wake up because it might be over soon, wake up because you're probably going to be here for awhile.
I stop doing the things that I know are good for me, in the way you often do when things get hard. Too tough to sit—I'm in survival mode. Walking is the only exercise I can really do, but it won't stop raining. This is the stormiest winter I've had in my almost ten years in San Francisco and it's starting to get to me. Some days I brave the rain anyways, coming home soaked, because I just can't be in my apartment anymore.
My bed stays unmade for weeks, this time around because I physically can't make it though I desperately wish I could. When I finally do, it feels like a sign of something more—clarity, control, I don't know. The sun comes out one Saturday and I leap out of bed I'm so excited. It's just for a couple of days, but it's enough. A glimpse of brighter days.
Read This Next: Episode 7: The Day I Said Goodbye to My Right Breast