July 5, 2012 at 2:57 pm (Uncategorized)

I’m back from a visit with the sarcoidosis expert in Ohio. I haven’t posted for a few days because I needed to process the trip. Plus, it kicked my ass because I had to get my chemo treatment the day before we left.

You see, my health insurance company is strict about exactly when I can get my monthly infusion medications. I’m not sure why they act like Earth will careen out of its orbit if I get Rituxan and Remicade two days early or one day late. But that’s the way it is. I won’t complain to them or about them too much, though, because they agreed to pay for these medications, which cost $30,000 and $50,000 each dose—and aren’t yet approved by the FDA to treat sarcoidosis. They could have denied the claim outright.

Travel day started with my emptying my stomach contents—and seemingly my stomach itself. But I was able to choke down some saltines along with anti-nausea medication. After that, Jay took care of everything. He had wheelchairs lined up to ferry me across giant airports. He got seltzer water for me and seats with more leg room. He held my hand, patted my back, and said nice things. All I had to do was stumble onto the planes and then fall asleep.

My appointment with the sarcoidosis guru was the next day. It’s always reassuring to see him. In advance, I write down a list of questions. He answers every one, without rushing me, before proceeding with the physical exam. I had a lot of questions this time. Even though I’m taking some heavy duty medications—the monthly chemo and Remicade infusions, a daily chemo pill, loads of prednisone—I’m having increased neurological problems. Along with the vertigo, severe pain, and blips of blindness, I now have constant grainy vision that sometimes gets bad enough that I can’t really see much at all. The guru said these problems are from the disease attacking two cranial nerves—my old friend, the vestibulocochlear nerve that maintains balance, and now, the optic nerve, which connects the eye to the brain. The crushing headaches are from neuropathy.

The conclusion of this explanation would have been a good time for the guru to reach into his desk drawer and pull out a glowing, golden pill, which he would give to me, saying “this will take care of everything.” Actually, I would settle for a magic pill that fixes just a few of my problems. Hell, alleviating one symptom would be refreshing. But magic pills are not the stuff of real life. I know this. But there’s still a piece of me that, against all reason and reality, persists in hoping for a cure for this incurable disease I’ve had for nearly nine years—and then gets disappointed.

The guru did mention a new drug in the pipeline. It’s called apremilast, and it’s shown some promise in treating chronic forms of cutaneous sarcoidosis. But he cautioned me against pinning my hopes on this. For one thing, apremilast isn’t yet available in the U.S., and clinical trials don’t always have happy endings. He told me about a recent clinical trial that used stem cells to treat auto-immune diseases. The stem cells ended up causing more problems than they fixed.

But the guru did have a plan for me. He agreed with my local orthopedist, who recently discovered a 1.5 centimeter lesion on one of my ankle bones. This is probably caused by sarcoidosis, but without digging out some of the bone for a biopsy there’s no way to be sure—and there’s no reason to strive for clinical certainty because either way, there’s no treatment for it. I’ll get fitted for a custom ankle brace to shore up the fragile bone, and hope the hole doesn’t expand.

As for my cranial nerve problems, he’d like me to see a retinal specialist or a neuro-opthamologist for testing that will quantify the extent of the damage to my optic nerve. If it’s severely compromised, the guru might recommend I add Cytoxan—a particularly nasty chemotherapy infusion I had to get twice a month for over a year—back into my drug cocktail. Merely thinking about Cytoxan makes me anxious and overwhelmed, so I am trying not to think about it. I just need to focus on finding a retinal specialist and taking care of the testing.

I like having a plan, even when it’s something as basic as visiting another specialist. The prospect of quantifying the damage to my eye sight is frightening. It’s easier to think of my latest neurosarcoidosis problem as “some fuzziness,” rather than measuring the degree of loss or the progression to blindness. Ultimately, though, it will be relief to know what’s happening to me and to decide what to do about it. At least that’s what I keep telling myself.

There might not be a magic pill to fix everything that’s wrong with me, but that doesn’t mean there’s not magic in my life to help me deal with what faces me. I have an amazing friend in my husband, who always travels with me. I have an amazing son, who was excited to welcome me home. I have a doctor with experience and wisdom. I have health insurance that pays for treatment. I have friends, near and far, who showered me with good wishes and prayers for strength on my journey. And I have the outline of a plan to follow. I am not alone in this maze of illness.


  1. Rayna said,

    You are definitely not alone! Sending good wishes your way. I really hope I get to see you in a few weeks!

  2. Barbara Barnes said,

    You have company..some Chronictown residents and some visitors.. really glad you made time for a blog, and really hoping you do not have add cytoxan back in. Also so glad Jay was able to be so helpful.. sending you all care and peace filled thoughts…

  3. Ellen Gregory said,

    I’m so glad you have such amazing support XO

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