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.

3 Comments

  1. Gaby and Don said,

    We wish you more and more good news.

  2. Randy Bekkedahl said,

    I’m so happy to hear the good news for you Rebecca. Acthar rocks! I’m familiar with NORD, though have never used it. I used to get help with my meds from The Healthwell Foundation, but they no longer have funds for my disease. So last year I got help from the Assistance Fund. I know how you feel about finding expensive drugs to treat your illness. Mine are only about $7,000 a month, so nothing compared to yours, but still more than I can afford. So the grants from these groups is literally a lifesaver.

    I just am so happy for you right now and wish more and more good news.

    Oh, I just remembered another fund I’ve used—the Patient Access Network. They also are having trouble funding their programs like the Healthwell Foundation.

  3. 8girlsmama said,

    Hi! I have lung sarcoidosis and I have made a friend who has been diagnosed with neuro sarc. I sent ou a friend request on Facebook and would love to have you be a part of our page: Sarcoidosis and Neurosarcoidosis

    We’re so excited about your good news!

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