Recovering From Cancer Means Convincing a Lot of People That I'm Okay

I’m like the car accident you can’t take your eyes off of.

by Lindsay Jean Thomson; illustrated by Kitron Neuschatz
Nov 20 2017, 1:00pm

Kitron Neuschatz

This is the 12th entry in a multi-part series. Read the rest here.

For the first time I understand why people do the "you’re so brave" thing. Generally, I can’t stand when people say that because what it really sounds like you’re saying is "your life sucks." My other least favorite is when people complain about their lives to me and then shrug, "but, you know, perspective!" Perspective?

Your problem isn’t perspective—not the way you think, at least. It’s that you’ve got to feel bad about someone else’s life to feel good about your own.

"Does it feel better?" the radiation technician asks hopefully. They’re really trying—I’ll give them that. I want to be able to tell her yes, but I can’t. I keep a log of how shitty each day is but I’ll spare you the details. It’s boring. It’s ugly.

I think I’ve reached the anger stage—I guess it was inevitable, getting mad. This is inconvenient, you know? I feel inconvenienced by you, Cancer. I have other things to do. I have a life and it’s a really good one. You weren’t invited. You’re not welcome here.

I overhear two women in the waiting room. One says she’s been visualizing the radiation waves reducing the size of her tumor. I’m filled with dread: Why haven’t I been doing that? Shit shit shit. I should be thinking good thoughts instead of word vomiting about my fucking feelings on the internet. But then I remember that not everything can be changed by your thoughts, no matter how much you wish it were so.

It gets better for a few days. I’m down to a still uncomfortable but much more manageable half hour or so per treatment. Just when I start to think I’ve gotten the hang of it, my skin begins to burn and peel in the treated area. But of course it’s not like a regular sunburn. That would be normal and nothing about this is normal. My skin is raw, like someone has taken a grater to my chest.

Toto’s "Africa" is playing in the treatment room and I’m filled with rage. I might actually scream. "Would you like us to put something else on?" one of the technicians asks just in time. "Yeah, how about...Biggie."

The next day when I come into the radiation room, they already have Biggie playing. It’s really thoughtful of them, but I didn’t think this all the way through. I don’t exactly want to remember this experience every time I hear "Hypnotize," you know? Biggie biggie biggie, can't you see.

My skin gets worse and it’s a terrible hit to my vanity. One more thing I wasn’t expecting, my vanity—add it to the list. But my skin is so red it’s almost purple. Splotchy and suffocating, like a toddler in the middle of a temper tantrum crying so hard they can’t breathe. Angry beyond words. It hurts. My armpit is the worst of it, it’s a difficult place to heal. I make an appointment with my general practitioner and it turns out my skin has gotten infected. Great.

I bleach my hair and contemplate piercing my nose. What existential crisis? Nothing to see here, move along. Radiation is just five weeks but it feels like it’s never going to end. Then, finally, the last day is here. There’s an older woman in the waiting area—who am I kidding, they’re all older—and she offers to tie my gown for me. I’m always so haphazard about it. I pass, "Nah, they’ve already seen it all." Then, unsolicited, I say, "It’s my last day!"

She’s visibly nervous—it’s her first time. "What’s it like?" she asks. "Well..." I trail off. I wish I had better news for her. "Not that bad!" My voice gets higher with the lie but she doesn’t notice, or doesn’t want to.

My friend Elle came with me today so we can celebrate after. I tell her I’m having a hard time writing about this stage of treatment because it’s so negative. Yeah, but it wouldn't really be honest if you pretended it was easy all the time. It’s true, but this is what I hate more than anything: that I’m like the car accident you can’t take your eyes off of.

On the way to an appointment with my oncologist, an ad on the radio helpfully informs me that early detection is important—did you know that if you get diagnosed with Stage 0 or 1 breast cancer, your survival rate is almost 100 percent? I realize I never even bothered to check my odds. How crazy is that? At the last minute, I get the nerve to ask my oncologist about survival rates. "Yeah, well, the thing is you as an individual either of have a 0 percent or 100 percent rate of survival," she says.

Is that supposed to make me feel better?

I guess she’s right. I also have a zero or 100 percent chance of getting hit by a bus today, so it’s kind of a dumb thing to say. But it’s the first time I’ve allowed myself to contemplate this not working out. I’ve been in survival mode; there hasn’t been a place for that kind of thinking. Now that treatment is slowing down, I’m starting to reflect in a different way. Don’t worry, I’m still optimistic. Except for sometimes when I’m not, which seems fair.

I look it up later and it’s hard to find a number for my exact stage (IIIC), but the five year survival rate for stage III breast cancer is 72 percent. Mine’s probably a little lower, but still not bad odds.

I’m expecting this to almost be over when she tells me that she wants to put me back on Pertuzumab (one of the drugs I got with chemo). It’s not that big of a deal, but I wasn’t expecting it. I choke back tears. "Are you okay?" Yes. "You don't seem okay," she says. Then she asks if she can refer me to an oncology psychiatrist.

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When the psychiatrist calls a few days later, I immediately start to cry. I don’t even know where it’s coming from—I honestly don’t feel that bad. But I’m starting to realize just how much time I spend convincing people, including myself, that I'm okay.

Someone I met on a panel about breast cancer a few months ago died. How could this happen? I didn’t even know her but she was so alive. She was like me.

On a spring cleaning rampage, I throw away everything I can. Even things I know might be useful to other people, to other breast cancer patients. My mastectomy bras, Vicodin, you name it. I know I could save these things for someone, but I don’t want to. I want to be done with it.

At a party, I smile and nod politely as someone I’ve just met drunkenly tells me her deep thoughts on the energetic causes of disease. Like I haven’t heard it a million times before. When I can’t take it any longer, I cut her off with a sarcastic, "Yeah, I'm pretty sure even Western doctors know stress is bad for you." My bad moods are brief and furious, like a flash flood or a strike of lightning. Here and gone before you know it.

The appointment with the psychiatrist turns out to be an appointment with a social worker. The thing about social workers is that they tend to give you Sad Cancer Face. This one is no exception. Worse, I spend half the session educating her about cancer. I make a follow-up appointment with her anyways, but only because I don’t want to hurt her feelings. Another person I have to convince I’m okay.

I cancel my next appointment with Sad Cancer Face Social Worker. In a weird way, it actually was helpful—it reminded me of all the things I’d rather be doing to take care of myself. Sometimes getting what you don’t need is a good reminder of what you do.

Unfortunately, the Pertuzumab my oncologist put me back on is making me feel pretty awful. And for what? Something like a 2 or 3 percent reduced risk of reoccurrence, if I were to take it for a whole year. But I’m not. It’s just a few more sessions. Why bother?

I tell my oncologist and we agree to cut out the Pertuzumab from the remainder of my treatment plan. My skin gets better. Everything gets better. It’s summer and I find it impossible to be anything other than happy in the summer, no matter how much I might try.

My friends and I go to Nevada City for the Fourth of July. It’s strange to be back—when we were here exactly a year ago, I was just starting to acknowledge that something might be really, really wrong. The lump in my breast had multiplied in size in just a few months. I remember telling Kim about it after a few beers. "Can I feel it?" she asked and her eyes went wide with concern at the undeniable mass of it. "Will you make sure I actually get this checked out this week?" I asked. And I did.

Finally my skin is better and I can go back to my swim-like-a-marine-mammal class. It’s my first time back in eight or nine months and it’s hard but when I get it right—when I don’t try so damn hard—it feels so good. After class, I ask the teacher what I can practice on my own and he tells me my form is still good, it’s really just about feeling the water. He gives me a little history on traditional Polynesian navigation: Rather than working their way towards their destination, their perspective is that their destination is coming towards them. All they have to do is feel the water. Imagine if your own internal navigation system was calibrated on feeling. On moving with the elements instead of against them.

Someday, when I write that best-selling book about my exploding star, I’ll tell you that love is the way. But I figure that since that day may be far away or never at all, I’ll just tell you now instead: Love is the way.

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breast cancer
cancer diaries