Episode 6: Everything I've Had But Couldn't Keep
The videos about surgery's side effects were kind of ridiculous: animated, with a narrator that sounds like a robot.
Hi, may I speak with Lindsay?"
It's my oncology nurse. It's supposed to be my last day of chemo today but my white blood cell count is too low to do treatment. She says we have to push it back a week and I know it's not a big deal, but I burst into tears. I try to choke them back as I ask her what I can do to make sure my count is high enough to do chemo next week.
Nothing. Wait and see.
I'm already on my pre-chemo regimen of steroids and no carbs, which means I haven't slept well and I've had no sugar. Plus hormones and menopause— a bad combination. I don't know how to explain the mental and emotional preparation that goes into the days before chemo. What it's like to feel good with the shadow of knowing what's about to come.
So I do what any reasonable human would do and get really, really drunk. And it feels great. I wake up hungover the morning of my blood draw — I'd feel guilty, but what a waste of a good time that would be. And it turns out my white blood cell count is fine. Better than before I started chemo.
A week later, I do the whole steroids/no carbs/hot flashes/no sleep thing again. I show up to chemo in a bad mood and it only gets worse. They give me a different nurse than usual and she's desperate for approval I don't have the energy to give. The power doesn't work at my station. They move me to a new one, but it's been reserved for someone else.
Can we just do this fucking thing? I am ready to get this over with. I don't just mean today, I mean chemo. I want this to be done.
We're an hour behind schedule when the new nurse sticks me with the needle but I can tell she's having a hard time finding the vein once she's in. After a minute of her digging around, I snap at her that maybe this spot isn't going to work out—I can tell it will bruise and it does, lingering for almost three weeks.
The pharmacist fills my prescription incorrectly but insists it's right. The system is down so they can't fix it right now. I've been here so long and I just want to go home. Minor, again, I know. It's only bad because I'm making it so.
All of this feels like some sort of bad omen that this round of detox will be tough, but it isn't. I barely get sick. I keep waiting for the other shoe to drop, but it never does.
And the bad parts? They're fading faster than a bad dream. Less visceral even. I can remember the feeling, something like a void, but I can't feel it anymore. Some of the side effects persist, but the void is gone.
I go to the hospital for my CT scan and MRI. The MRI is a first. They make me wear this Silence of the Lambs cage over my head and I'm bummed none of my friends are here to laugh at me.
It only takes a couple of days to get the results back and it's good news: It does not appear that the cancer has metastasized to my brain or organs. And the tumors have shrunk a lot—only one of them is still visible, barely.
I'm still in the detox phase when I participate in an online panel and reading about why we write about disease. I read my first piece, the one about getting diagnosed (starting at 5:45 if you'd like to watch). I realize as I'm doing it that I've never read it aloud and how different it is, how much more I feel.
The other women on the panel have also had breast cancer, but they're years ahead of me. They've already been through chemo, radiation, and reconstructive surgery. One of them has metastatic cancer. Another shares a story she wrote about getting lymphedema six or seven years after going into remission, and I'm suddenly struck by the realization that this is never really going to be over. I've been so focused on getting through chemo that I haven't processed that this will always be a thing.
I'm terrified that I will get lymphedema too. My surgeon plans to remove all of my right breast and two to three dozen lymph nodes near my armpit. Two or three dozen. That seems like a lot. I start asking other doctors and they think it seems like a lot too.
Paula and I go back to Pine Street Clinic. The integrative practitioner there is pleased with my response to treatment; I feel like a good patient. I ask him what he thinks about the lymph nodes and he suggests getting a second opinion. What they're doing, at least in part, he says, is trying to mitigate any sense of regret I might feel if the cancer comes back.
I'm not getting cancer again, I tell him, and I mean it. "Okay," he says, a little surprised at my certainty. He nods. "I like that for you." It may sound like magical thinking to you, but it's going and it's not coming back. I just know. I have a telephone appointment with the recommended surgeon and she's much warmer than my current surgeon. She says she typically takes ten to 15 nodes, which is what I want to hear but now I'm more confused than ever. On her recommendation, I talk with a radiation oncologist. He says that what either of them will do is remove a section of fatty tissue and that we won't know how many nodes are there until after. Everyone has a different amount and some won't be immediately visible.
So it sounds like they'd be doing the same thing? I ask.
The likelihood of getting lymphedema is about 20 percent, but every additional treatment (including the radiation and reconstructive surgery we have planned) increases the odds. Taking more lymph nodes increases the odds. I try to make an appointment to talk this over with my current surgeon, but it's the holidays and it's tough to get through. When we finally talk, she seems offended that I've consulted with another surgeon. I feel like I have to placate her. It's nothing personal. Maybe you don't want a surgeon who gives you the warm fuzzies. Maybe you just want a surgeon who's really fucking good at cutting out cancer.
I've been reading The Emperor of All Maladies, a biography of cancer—it's excellent, read it. Some of the things they used to treat cancer even just 50 or 60 years ago seem barbaric. Siddhartha Mukherjee, the author, writes: "Hippocrates had once abstrusely opined that cancer was 'best left untreated, since patients live longer that way.'" I wonder what we'll think of my treatment later, even just five or ten years from now. I guess we're all just doing the best we can with what we've got. But is that good enough? More from Mukherjee:
The cancer cell is a desperate individualist, 'in every possible sense, a nonconformist,' as the surgeon-writer Sherwin Nuland wrote. The word metastasis, used to describe the migration of cancer from one site to another, is a curious mix of meta and stasis — 'beyond stillness' in Latin — an unmoored, partially unstable state that captures the peculiar instability of modernity. If consumption once killed its victims by pathological evisceration…then cancer asphyxiates us by filling bodies with too many cells; it is consumption in its alternate meaning — the pathology of excess.
The pathology of excess: I'm too much. Ha. Tell me something I don't already know.
The other surgeon, the friendly one, recommends a few videos to watch about surgery and reconstruction. They're kind of ridiculous—animated, with a narrator that sounds like a robot. They cover the process and side effects. Here are some of the potential risks of surgery: allergic reactions to the anesthesia, infection, seroma, lymphedema (have I mentioned lymphedema yet?), the skin might not close or heal fully, nerve damage, stroke, heart attack, and death. Death. Ha. Ha.
I decide to stick with the original plan. Two weeks before surgery, I go to the hospital for my pre-operative appointment. They ask some questions about my medical history, give me something to practice strengthening my lungs to avoid post-op pneumonia, and run me through some of the day-of details. I don't even have to take my top off, which is nice. Immediately after, I have a related appointment with my breast care coordinator. We talk through more of the pre- and post-surgery details. I can tell that she's annoyed by my questions—I'm doing everything out of order. "I'll get to that," she chastises me. As if it's more important to get through the fucking book than to respond to me, the real live human right in front of her.
An acquaintance tells me about a plastic surgeon they know whose favorite surgery to perform is breast reconstruction because she "loves giving women their femininity back." Oh, really? If your idea of femininity is limited to good hair and a nice rack, you don't know what I know. My femininity isn't something you can give me because it's not something that can be taken away. My femininity isn't in my breasts or the shape or size of my body: My femininity is in every ounce of my being. My femininity is fierce as fuck and it's mine.
My ayurvedic practitioner asks how I'm processing the upcoming surgery. I'm not sure—it doesn't feel real yet. I look down at my breasts, something I've mostly been avoiding since the diagnosis, and I see these three perfect freckles. My little constellation. And I'm sad knowing it will be gone soon.
When I think about surgery, all I hear is"Pale Blue Eyes" by The Velvet Underground.
Sometimes I feel so happy
Sometimes I feel so sad
Sometimes I feel so happy
But mostly you just make me mad
Baby, you just make me mad
Linger on your pale blue eyes
Linger on your pale blue eyes
Thought of you as my mountain top
Thought of you as my peak
A thought of you as everything
I've had but couldn't keep
I've had but couldn't keep
Too literal? It's less than three days away and it's starting to hit me like I knew it would. I'm not worried about the surgery. But what will it be like to wake up and be transformed?
This story originally appeared on Medium. Stay tuned for updates from Lindsay Jean Thomson on Tonic.
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