Catch-22

May 1, 2015 at 5:06 pm (Uncategorized) (, , , , , , )

I’m sorry for not writing here for so long. It’s been a rough few months. Nothing cataclysmic happened—no time in the hospital or emergency trips to specialists—but it hasn’t been easy since I wrote those happy posts about starting Acthar and how much better I was feeling.

The Acthar has caught me in a Catch-22 bind. Wikipedia defines Catch-22 as “a paradoxical situation from which an individual cannot escape because of contradictory rules.” The paradox I’m confronting is this: at a high dose, Acthar does seem to control the worst of my neurosarcoidosis and keep me out of the hospital – it just causes severe depression in the process.

I’ve bumped into depression at varying degrees throughout my life. In the past, I’ve negotiated bad patches with patience, medication, and therapy, and arrived more or less unscathed on the other side of inner darkness. It feels different this time. Medication doesn’t seem to be helping drag me out of the bleakest areas of my internal landscape. I go to therapy and try to cultivate patience, but still, the depression sticks to me like humidity.

To try to address the depression, my doctors had me cut back on my Acthar dose, but within weeks subcutaneous sarcoidosis—little nodules that erupt beneath my skin that usually are harbingers of the disease’s resurgence—dotted my arms like shotgun pellets. Then along came more disruptive and dangerous symptoms. The headaches and vertigo caused by the sarcoidosis in my brain and cranial nerves came roaring back. I was stuck in bed for a couple of weeks. We promptly bumped my Acthar back up to its original dose. I feel this Catch-22 pressing like a barbed wire boundary no matter which way I turn. With less Acthar I am trapped in pain in bed, lonely and depressed. With more Acthar, I carry my loneliness and depression with me and don’t really want to get out of bed even if I’m feeling physically well enough to try.

Trying to put words to depression—to explain it or describe it—is like trying to catch fog. It emanates from dysfunctional neurotransmitters in the brain, and yet I feel its effects in my gut, my bones, and my soul. It’s a heaviness that pins me down the minute I awake. Writing, calling a friend, talking to Jay, smiling for Andrew, turning over in bed feel not just like too much work, but utterly impossible. It robs me of my life just as much as sarcoidosis. It leaches the color and the sound from life. I see Jay and Andrew moving through the house. They are talking, laughing, and mock arguing over the pronunciation of a word. But it’s like watching someone watch a silent, sepia-tinted movie on television. I can’t reach them. I can’t join them.

I think what’s making it especially hard to try and emerge from depression this time is that not only am I injecting myself twice weekly with the higher doses of Acthar, but I’m also attempting to manage being sick and depressed at the same time. This probably sounds logical to everyone outside my own heavy brain, but it finally dawned on me the other day how much chronic illness and depression feed on and reinforce each other. A sick day and a depressed day look and feel very much alike. They are empty days, spent in bed, with the blinds drawn. There is something wrong with my head, and it’s making the rest of me unable to join life. If I could stick to a schedule, I think it might help me fight the depression. Positive routines in the past have helped me blast myself out of the cocoon of inner darkness. But it’s nearly impossible to formulate and stick to a routine when I’m also trying to manage a chronic illness whose main characteristics are chronic pain and chronic fatigue – you never know how you might feel when you wake up in the morning, but the odds seem to be not good.

Wikipedia doesn’t tell you how to emerge from a Catch-22 trap. I’m certainly not stopping my Acthar. I’m not going to let the disease lay waste to my body. But I also can’t let the depression conquer my soul. What do I do? I think there’s something to my old standby of patience, medication, and therapy. Maybe my body will adjust to the Acthar, or maybe the anti-depressants will kick in more fully. Maybe I’ll find a way (and enough health) to hammer out and stick to a basic schedule that gets me out of the house and interacting with the world every day. Maybe if I stick to my new goal of trying desperately to put into words my fight against depression, I’ll find a way through the fog, back to the brilliant, colorful world I can sense is right in front of me

I know that’s a lot of maybes. But it’s what I’ve got.

Permalink 3 Comments

Caveats

February 6, 2015 at 4:08 pm (Uncategorized) (, , , , , )

Pardon my long absence. I’ve had an eventful—and at times grueling—few months. But I’m finding my way back to writing, and hope to post more regularly here.

If there’s a theme to my news it’s this: I’ve gotten a lot of good news, but good news with caveats.

I’ll talk about my other news (like a more involved knee surgery than I thought I’d signed up for and medication side effects) in future posts, but let’s start today with my sarcoidosis. In December, I went to Ohio to meet with my sarcoidosis guru to assess the impact Acthar is having on my systemic disease. Acthar is the new treatment I was able to start on last May after the National Organization for Rare Diseases (NORD) was generous enough to enroll me in their patient assistance program after my insurance company denied coverage for this very old but newly very expensive drug. I was desperate when I began the twice weekly home injections of Acthar, stuck as I then was on an unsustainable regimen of toxic drugs that seemed barely to control my sarcoidosis—two monthly chemotherapy infusions (Cytoxan and Rituxan), one chemotherapy pill (CellCept), and prednisone. And during the past seven years, I had “failed” an even longer list of equally toxic drugs that did even less to stop the disease’s victory march through my body than the ones I was on. Acthar felt like my last hope.

I went to Ohio bearing films of whole body PET scans done before I started Acthar and six months after the drug had a chance to begin working. The comparison, according to my guru, was “astounding.” Acthar diminished the active sarcoidosis in my body by 50 percent. I need to repeat that because the news still takes my breath away. In six months, Acthar did what a host of immunosuppressants, chemotherapies, TNF inhibitors, biologics, and corticosteroids could not. It not only stopped the sarcoidosis from progressing, but beat it back. This is great news in itself, but it also means I can stop both Cytoxan and Rituxan. I can look forward to fewer nasty chemo side effects, and hopefully more energy as I quit these toxic brews.

There is, however, a caveat. As much as Acthar is demonstrably working to fight my sarcoidosis, I am not feeling much better. I continue to struggle with almost daily migraine-level headaches, along with frequent bouts of vertigo that are so intense I can’t get out of bed. I’m still exhausted every day, even after sometimes sleeping fourteen hours a night. The left side of my face is still numb, and my left leg is so numb that after my recent knee surgery, I gave myself second degree ice burns without feeling a thing.

“What is going on?” I asked the sarcoidosis guru. “Why don’t the encouraging test results mean that I feel better?” It turns out that the disease has damaged—probably permanently—the delicate cranial nerves that are responsible for my pain, vertigo, and vision problems. My chronic fatigue and various areas of numbness are also caused by nerve damage. There is no current treatment for peripheral neuropathy.

If I plotted my emotions during my hour visit with the guru and in the weeks since then the result would look a lot like a sine curve. My hopes rise, dip, rise, and dip again, and I end up pretty much back where I began. My inner dialogue goes something like this:

“I’m so much better! Acthar is actually working”
“But my head is throbbing and my world is literally tilting.”
“I get to stop Cytoxan and Rituxan! That will help me feel better, maybe a little less tired.”
“Who cares? I have permanent nerve damage and there’s no hope for improvement.”
“But I’m so much better. Acthar is actually working.”
(Repeat. Ad infinitum.)

It’s exhausting to be on a rollercoaster of emotions. In turns, I am elated, deflated, hopeful, and gloomy. I push myself to appreciate the truly good news I received. I catch myself wallowing in the caveat. When I inject myself twice a week with Acthar, half of the time the syringe feels like it contains a golden elixir of hope itself. “This will cure me,” I think. But the next time I’ve got to plunge a needle into the muscles of my thigh, it only hurts and makes my hands shake. What does it even mean to be cured if the damage the disease wrought means I’ll always keep feeling so lousy?

I’d like to report that I’ve found a way out of the oscillations of my personal sine curve. But it’s an emotional equation I can’t solve. I keep wrestling with this paradox: I am better, and yet I am not; I am being healed, but in a way it doesn’t seem to matter. It’s possible that sarcoidosis has broken me to the point that eradicating the disease won’t fix me.

Without a solution, what do I do? For now, I am falling back on the single most important lesson I’ve gleaned from my eleven years in Chronic Town: run away from big concepts like cures or permanent damage and reside instead in each moment. I’m trying not to give up on hope, but just scale it back. I’m seeking refuge in daily life— in my son and my husband. I cannot solve a conundrum. But I think I can live within it.

Permalink 2 Comments

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.

Permalink 3 Comments

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.

Permalink Leave a Comment

Miraculous

May 20, 2014 at 9:01 pm (Uncategorized) (, , , , , , , , , , )

It feels like a miracle has happened to me.

When I last wrote, I was stuck between good and bad news. The sarcoidosis guru I see in Ohio recommended a promising new treatment for me. But the plan managers for my prescription drug plan refused to cover the expensive medication called Acthar. Since then, we went through two rounds of appeals with the plan managers, and got a resounding “NO” for our efforts. In fact, the bureaucrats wouldn’t even talk to my doctor. A “licensed pharmacist” made the decision that I should try IV prednisone—as if I haven’t endured numerous rounds of that over the past decade.

We had one round of appeals left. Unfortunately, the plan managers told us that even if we somehow convinced them to approve Acthar, they could opt to classify it in their pricing scheme so that we would have to pay for half the medication – which wouldn’t even count toward our annual out-of-pocket maximum. At somewhere around $30,000 a vial, such a victory over the plan managers would be a pyrrhic one. There is no way we could afford one month of such “coverage.”

I think I stopped taking real breaths after Jay got off the phone with the plan folks and told me the news. For the first time in many years, my doctor had a treatment that he thought might actually help me. After 3 months of Acthar, I could at least (hopefully) get a break from Cytoxan, the chemotherapy infusion I get every month. It felt like just as I heard the first good news in quite a while, faceless and nameless bureaucrats were snatching it away.

Here’s where the miracle comes in. The sarcoidosis guru put me in touch with a non-profit called NORD– National Organization for Rare Diseases (https://www.rarediseases.org/). In addition to providing advocacy and education for those affected with rare diseases, including sarcoidosis, NORD offers patient assistance programs. One such program helps patients obtain so-called “orphan drugs”—medications that treat rare diseases and so are not manufactured in large quantities and are often extremely expensive—like Acthar. I filled out an application, crossed my fingers, and kept holding my breath.

I found out yesterday that NORD approved me for full assistance so that I can obtain a 9-months’ supply of Acthar at no cost. I am overwhelmed with gratitude to NORD and its donors who made this possible. I can’t put into words how grateful and we relieved we are. I finally took a real breath. We can postpone our battle royale with the plan manager. I can try out this new treatment, and maybe get a break from the awful side effects of the Cytoxan. It brings tears to my eyes every time I think about it. All I can say and feel is “thank you, thank you, thank you.”

Permalink 6 Comments