This is the 13th entry in a multi-part series. Read the rest here.
It's the day of my last Herceptin treatment and two days before the one year anniversary of my diagnosis. I have this vague and juvenile idea that this might actually be done, that I will be Officially In Remission. An almost-perfect full circle. I don't tell anyone this because I know it's silly. My oncologist doesn't get back to me in time and I'm unreasonably disappointed.
On my cancerversary, my friend Allie interviews me for her podcast—not the neat conclusion I was hoping for, but a good opportunity to reflect. She asks me what I’ve learned and I realize that health isn't binary. It's not a light switch, on or off. Sometimes it gets light so slowly and imperceptibly that you don't even see it happening. For a person with chronic illness, it’s not as simple as healthy or sick.
When my oncologist finally gets back to me a week later she swiftly crushes my idea of remission. It's a typically evasive answer, the kind I've come to expect from her, but it doesn't make it any less hard to hear. She parrots what she's already told me: I'm cancer-free as of my surgery in January and will be in remission as of the date of my last treatment. And because the FDA has recently approved a new drug that she might want to put me on, my last treatment might not have been my last treatment after all.
What kind of expectations does someone with cancer get to have?
I'm embarrassed for even hoping and relieved I didn't tell anyone.
The latest research shows that this new drug probably gives you a 2 percent increased survival rate, a number that seems so small to me as to probably be within the margin of error. I'm leaving for Burning Man in a couple of weeks, so we decide to table the conversation for when I'm back.
I'm feeling pretty anxious about going. I'm still so exhausted from radiation, even though it's been over for almost three months. I've volunteered to do Early Arrival with my camp—that's when you go early to build—and worried I’ve overcommitted myself. But I go and it's great and it's hard and all of the things (my editor here didn’t want to read about Burning Man so I wrote about it on Medium instead). Improbable as it sounds, I manage to sleep seven or so hours all but one night. So I come back in much better shape than most of my friends.
I see my oncologist a couple of days after I get back. As always, she starts by examining my breasts. She seems distraught by something she's found in my left breast, the real one, and tells me it's time for me to get my annual mammogram and oh why don't you go right now while you're already here. We table the conversation about adding to my treatment plan again.
It's a Murphy's Law kind of days at Kaiser—all of the elevators are broken and for some reason the stairs are not accessible in the common areas. I get to the mammography department and the man working at the front desk won't let me get one because I'm under 40.
But. I. Already. Have. Breast. Cancer. I seethe.
The order from my oncologist hasn't gone through yet so he tells me to wait. Too much time goes by. Enough time for me to start to think about what if. I cycle through a few different scenarios in record time—saying fuck it and going to Bali. Doing treatment again. Being someone who is always and forever sick. Until I’m not.
I'm angry because if I had known this was going to happen today, I would have brought a friend. Then again, at least I was spared the stress of worrying about it for a week.
I'm tired of waiting. I go back up to the 8th floor and walk straight past the receptionist to my oncologist's scheduler in the back. I don't remember what I said, but I don't think it was very nice. Finally I get the mammogram and it's nothing like last time—the technician takes two or three images and I'm out. No fraught faces, no leaving to show the doctor. My oncologist emails me the next day to tell me it looks good.
When I tell my friends the story later, they're so immediately concerned that I realize I need to lead with the conclusion—that I'm okay—because this is how it is now. This, I think, is the hardest thing to come to terms with: that the normal you've been chasing doesn't exist anymore. It can't.
I'm really sad. I don't know if it's the comedown from Burning Man or what. I can't get out of bed for a couple of days, which isn't like me—I even managed to exercise throughout chemo. I tell a friend but someone else shows up at just the wrong time so we have quickly change topics. She doesn't bring it up again so I don't either. I do, however, reach back out to the oncology psychiatrist and make an appointment to see her.
When I'm there, I can't tell if I'm trying to outsmart her or get her to like me. Both, probably. Pathological, but she's probably used to it. And it goes both ways—we talk about Burning Man and dissociatives and it's clear that she wants me to know she's not like those other doctors; she's a cool doctor.
And so I'm honest but not that honest and when she recommends a short-term antidepressant I say sure. The analogy she gives feels trite and the whole thing reminds me of going to go get a medical marijuana card—you tell them you have some ailment, real or pretend, the doctor asks you a few questions, you give them the right answers because you're not a moron, and out you are. There is a promise of follow-up, but it feels like pretense. But it doesn't matter because I'm already feeling better.
I email my plastic surgeon to talk reconstructive surgery dates for November but he doesn't get back to me and I forget to follow up because I'm busy too.
In mid-September, I find out October is Breast Cancer Awareness Month. Who knew? I start pitching a talk to companies here in the Bay Area and for the most part everyone is interested until they find out I'm charging a fee. "Yeah, well, breast cancer is expensive," I joke. It works, sometimes. Often enough.
I start one talk with an abbreviated reading of my diagnosis piece. It's been a long time since I've looked at it—I think I was still in chemo the first time I read it out loud for a panel. I remember the feeling of my throat constricting as I tried to choke back tears, it was still that painful. But it's gotten a lot easier. That’s the beauty of time and repetition.
My goal for the talk is to educate young people about breast cancer, but it's more than that. I’m trying to get them to examine their ableism. I'm not sure I succeed at that part or not, but either way it's rewarding to share. It’s important to know that hard doesn’t have to mean bad. That you can be okay even when you’re not.
I email my plastic surgeon again and he says his scheduler will be in touch. Another week goes by and nothing. When I finally get ahold of her she asks when I'd like to come in.
Mid-November. "Oh, he's already booked for all of November." "What do you mean?" I feel that deep sob start to build up. "At what point does he fill up for November? When is he available then?" "Well he's already booked for the rest of the year."
For the rest of the year. I'm full-on fucking sobbing now. But. I'm. Trying. To. Make. Life. Plans.
I know we haven't talked for awhile, but the plan has all along been to do it as soon as possible and definitely this calendar year. Who the hell knows what's going to happen to my insurance next year. The emotional roller coaster of healthcare legislation has been taxing. I might have to get a real job. Fuck.
She tells me she'll work on it and get back to me in a week. So a week goes by and, you guessed it, nothing. I call and leave her a voicemail. No response. I send my surgeon a Very Strongly Worded email and gets back to me within a couple of hours. He's apologetic and he has an opening for November 20th.
November 20th. This is actually going to be over soon.
I'll take it.