Thankful

November 30, 2014 at 2:09 pm (Uncategorized) (, , , , , , , , )

In this season of gratitude I have extra reasons to be thankful.

Last week, I received some of the only good news about my systemic sarcoidosis I’ve gotten in the nearly eleven years since my diagnosis. My doctors wanted to see if they could measure the effects of Acthar—the injectable treatment that they used to try and replace Cytoxan about 6 months ago. I got a PET scan before I began Acthar. The results were demoralizing. “You lit up like a Christmas tree,” one of my doctors said, referring to the glowing orbs of inflammation that revealed the extent of the disease’s damage within me—in my lungs, my bones, my heart, my brain, even studding the skin beneath my arms and legs.

Last week, they repeated the PET scan. I waited with damp palms to go over the results with my local doctor. “I’m not going to use the word miraculous,” he said, “but these results are extraordinary.” The Acthar has made “significant” inroads against the sarcoidosis. Even my untrained eye could tell the difference between the two scans. While the first had glowed with the lurid presence of the disease’s globules everywhere, the second was darker, calmer, quieter. It feels like a double blessing. Not only did I get to stop Cytoxan, the most difficult of my monthly chemotherapies with the most side effects, but I was able to make some progress against sarcoidosis. I’m not well yet by any stretch of the imagination, but to be able to type that last sentence—to say I’ve made progress—is unfamiliar and exciting territory.

My double blessing is actually a triple one. If it weren’t for the generosity of a non-profit organization called the National Organization for Rare Diseases (NORD), I wouldn’t even have had the opportunity to test Acthar’s efficacy against my illness. Acthar costs somewhere between $30,000 and $60,000 a month. My health insurance plan refuses to cover the medication (and my positive PET scans won’t somehow force them to start. The plan will only accept the results of a large, peer-reviewed study as “acceptable” data that warrants providing coverage). If it weren’t for NORD, I would never have been able even to try Acthar. I’ve just renewed my application to NORD for next year. Hopefully, they will continue to help me.

I’m not accustomed to receiving good health news. I wasn’t quite sure how to react after reviewing the second PET scan. I’d grown unaccustomed to hope. Feeling it unfurling within me, like a green shoot taking root beneath the snow, leaves me breathless. The future feels a little more well-lit, a little wider. We’ll have to wait and see, of course, for what happens next. But for this moment, I can let just be grateful.

I’ll need to hang onto this awareness of gratitude in the coming weeks, which will be difficult. After this month’s round of chemo, Jay and I are heading to Ohio to meet with the sarcoidosis Guru to go over the results of the PET scans and try to figure out how to proceed and what to expect. I come home and immediately get knee surgery on December 9, to repair a torn ACL. Please keep me in your thoughts and prayers during this season of light and hope.

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The Land of In Between

November 18, 2014 at 10:24 pm (Uncategorized) (, , , , , , )

I got a haircut a few days ago. This means I am maintaining my super short, post-chemo look. Andrew calls it a “miniature pixie cut.” Most people who see me—and get over not recognizing me without the long, red hair that defined me for most of my life—tell me that they like my new style. I like it too. I think short hair is flattering on me. Plus, it’s certainly much easier to get ready in the morning now. I literally wash and go.
Truthfully, though, I’m keeping my miniature pixie cut for a different reason. I can’t stand the prospect of growing out my hair. I’m daunted by the prospect of months of “in between” hair that is unmanageable.

There’s a lot in my life that feels as though it is caught in the land of in between. Take my health. I’m certainly much better than I was a year ago, when I was hospitalized for over a month. I was in constant, crushing pain. My vision was blipping in and out, and I could not walk across the room to the bathroom because my vertigo was so bad. I’ve come a long way from those hopeless days. Thanks in large part to my new drug regimen of Acthar (generously provided to me by the folks at NORD, the National Organization for Rare Diseases), I’ve stayed out of the hospital and have mostly been able to live a limited normal life.

This is great news, I know. But it’s not always easy. There’s a lot of pain and uncertainty in the “mostly” and “limited” qualifiers I used to describe my healthier reality. I’m still not able to work with any kind of regularity. The sporadic postings on my blog are a testament to the problems I continue to have with chronic pain, exhaustion, and neurological problems. The past few weeks have been particularly hard. For no reason that I can discern, my systemic sarcoidosis flared up once again, and I was stuck in bed at home for days on end, unable to read and in so much pain that turning over in bed felt impossible.

There aren’t many role models for living through these in between phases of life and illness. I’ll use one presentation of illness as an example. On the TV drama Parenthood, Kristina gets cancer. As in most other pop culture representations of serious illness, Kristina’s travails follow a familiar arc. She is diagnosed with breast cancer, goes through chemotherapy, and loses her hair. For a few episodes, she is literally fighting for her life. But she pulls through. Between seasons, the show moves forward a year in time—at which point, Kristina’s hair has magically gone through the messy, unsightly process of growing from totally bald into a lovely bob. We don’t see her wondering whether to wear a hat when her hair has grown into a crew cut, or what to do with her miniature pixie cut.

The lack of nuance in the show’s representation of Kristina’s illness transcends hair styles. By the time the narrative picks up a year after she is declared cancer free, Kristina is totally back to normal. In fact, she seems healthier than before her cancer. Not only does she have the energy to continue as a full-time stay at home Mom, she decides to run for mayor. She suffers none of the physical after-effects of her illness. She’s not tired from her months of chemo. When she’s delivering her moving campaign speeches, she doesn’t struggle with aphasia or chemo brain. As in so many other depictions of illness, she is either sick or she is well. There is no in between.

Watching something like Parenthood’s dramatization of cancer can be particularly demoralizing for those of us with a chronic illness. We frequently dwell in the shadowy land of in between, caught between illness and health, or see-sawing between periods of wellness and sickness. It’s the chronicity of chronic illness that I find most challenging. When I emerge from weeks of a flare-up, I want to be purely well. I certainly don’t want to have to go in for yet another monthly chemotherapy infusion, or deal with feeling somewhat better. Hell, I want to run for mayor—or, at least have the energy to cook dinner a few nights a week and write every day.

Chronicity is hard, and it’s not the stuff of gripping narrative. “Yesterday I felt mediocre. Today I feel maybe a little more mediocre. And tomorrow I expect to feel more or less mediocre.” It doesn’t make for great television. But life is not television. I have no choice but to live with chronicity, to keep plodding along in the land of in between.

I am going to keep my hair super short for the foreseeable future. That means I’ll have one less aspect of my life up in the air and in a state of flux. Miniature pixie cut, it is.

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