I’m back from Cincinnati, my city of new hope. It’s also, I learned, a city of sudden falls. As I mentioned in my last entry, I traveled there to meet with yet another new physician, yet another specialist in sarcoidosis.
Truthfully, I went to meet the new doctor with fairly low expectations. After all, I’ve sat across from my fair share of honchos—men and women with degrees trailing after their names like titled nobility. I’ve experienced (or endured) the best that modern medicine has to offer. I’ve slid into sleek PET scan machines that look like space capsules and that left me radioactive for hours afterwards. I’ve watched new drugs drip into my veins, and wondered that with one dose of this high-tech stuff costing over $8,000, how much each drop must cost. I’ve heard the White Coats toss off words like TNF agents, ischemia, AST levels, gadolinium, and infarction, as if they were common words, the stuff of average conversation.
At the end of it all, though, after all the scanning, after the flurry of medical words, after the slow administration of toxic medicine, my visits to these experts ended with nothing more than some head-shaking and some head-scratching, and a disease that has afflicted my body like a pinball machine would—bouncing into my heart, my lungs, my brain, my pituitary gland, my lymph nodes, my nerves, my bones, and my liver—seemingly unchecked by all the promised wonders. Jay and I have spent thousands of dollars in search of the best and the brightest. It felt like we were climbing mountains to meet with mystical hermits tucked into caves—men and women who could pronounce a cure, or at least make some sense of my disease. But the mystics ended up having billing departments out back of their caves, along with a fleet of MRI machines. Each guru ordered the same tests, tossed off the same words, and shrugged in nearly identical fashions. They left us with a bad taste in our mouth for the whole sordid business of seeking healing, not to mention some nasty blisters from all that climbing to reach the caves.
Your probably get the sense that I didn’t want to go to Cincinnati, to meet yet another Wise Man, a new Wizard of Sarcoidosis. If it had been left up to me, I would have stayed home and waited for the pinball course of my sarcoidosis to knock out another organ. What would come next? My spleen? In my defense, my cynicism isn’t without cause. The “treatments” prescribed for my disease (namely, prednisone and a bevy of immune suppressants) left me not cured of my disease, but instead, nearly a hundred pounds heavier (and thus susceptible to a host of other afflictions) and frequently in the hospital or in the doctor’s office trying to ward off a nasty infection invited in by my weakened immune system. But the formidable combination of my husband and my mother blasted me out of my ennui and to Cincinnati.
Imagine my surprise, then, when the Wizard actually had a few tricks up his sleeve. Doubly shocking was finding him not tucked away in a cave of impenetrability, nor hiding behind a curtain of medical jargon. He simply talked with me for over two hours; he laughed at my attempts at jokes; he reviewed my MRI films with me, pointing out where he could see the tell-tale signs of sarcoidosis in my bones. Most incredible for me was that he began our meeting with a message of hope, not the usual head shaking and blathering on about the unknowability of my affliction. “Every year, you have a ten percent chance of going into remission,” he said. But he also didn’t want to waltz me off into a lethe of false hope. He admitted that I had a pretty crappy case of sarcoidosis. He’s had other patients with headaches as persistent as mine (eight months and still running, just in case you were counting); my vertigo didn’t confound him either. He’s sure (or as sure as he can be when it comes to dealing with a disease that is epidemiologically determined only by excluding all other possible conditions) that my November meningitis, my eight-month bout of headaches and sea-sicknesses, my problems with memory and balance, my facial numbness, and now my pituitary problems all began as a flare-up of neurosarcoidosis.
Part of what makes the wizard special is that so many people travel to the marvelous land of Cincinnati to be treated by him. He also collaborates with other major sarcoidosis research centers, so he has more raw data about the disease than anyone I’ve met before. He could tell me that one out three patients responded to X drug, or nine out of ten to Y infusion. While he’s honest that in terms of precision much of sarcoidosis treatment is akin to throwing darts at the board with your toes while fending off a rabid squirrel (my image not his), he had more raw numbers and more insight than I’ve encountered before. The wizard could even speak to the difficulty in monitoring sarcoidosis with current technology. He said it’s totally (and maddeningly) normal for brain scans to show nothing one day, inflammation a month later, and nothing again another a month later—all while your symptoms remain the same. He could tell me that sixty percent of MRIs of organs where there’s biopsy proven sarcoidosis come back normal. The wizard seems to have his fingers in many different pies. He works with pharmaceutical companies to test new drugs’ efficacy in treating sarcoidosis; he collaborates with other branches of medicine to see if drugs designed for, say, cancer or rheumatoid arthritis, might also work for sarcoidosis; and he’s even close to completing a protocol for making MRI a more effective tool in detecting sarcoidosis.
The wizard not only had interesting statistics and multi-disciplinary credentials to offer. He also had a few ideas on how to blast this disease out of my head (again, my word choice, not his). I’ll be starting a six-month course of Cytoxan, an infusion chemotherapy drug next week. If I tolerate this, he’d like to add Thalidomide (yes, the same Thalidomide that caused serious birth defects in the babies born to women who took the drug for morning sickness in the 1960s; since its rocky inception, though, the drug has proven effective in fighting specific types of leukemia, leprosy, and some forms sarcoidosis.) He’s hopeful the Thalidomide will not only make me an ideal candidate to work in a leper colony, but also knock out this god-awful headache. If it does, he’ll quickly taper me off the prednisone, then stop the Remicade, and finally the Thalidomide and Cytoxan.
A plan! A wizard! A city full of not munchkins but medical minds! Next year I could be in total remission! I had found a doctor who was willing to communicate with me between visits, who was eager to coordinate my treatment with my Montana physicians, who had ideas about making me well. Well—a word I hadn’t dared even think for several months. For the first time in a long time, I felt hopeful. Jay and I went out to celebrate. We slurped down bowls of pho from a decent Vietnamese place and set off across the darkening city streets to find dessert.
What happened next I cannot explain. I mean, I can tell you the medical facts: ankle surgery nearly twenty years ago undermined structural integrity of my right ankle; I probably have sarcoidosis in the ligaments as well as in the bones in my right foot; my extra weight has strained all my joints, including my ankle; and years of prednisone have weakened my ligaments. The combination of these factors meant that mid-stride, with thoughts of biscotti on my mind, I heard a pop, as distinctive as a champagne cork emerging from the bottle. I fell. I had no choice but to tumble down on the hard concrete. I couldn’t get up. The ankle immediately swelled to about five times its normal size. After eight hours in an inner-city emergency room (for us Montanans, a cultural experience not too far from jetting into Oz via tornado), I was sent home—in this case, to the hotel—on crutches and told not to put any weight on the foot. A follow-up visit with the Montana orthopedic foot specialist confirmed that I had spontaneously ruptured all the ligaments (and maybe a tendon) in my right ankle. In my immune-compromised state, surgery is out of the question. The thing is immobilized (yet again) in a big, black orthopedic boot. I’m not even allowed to start physical therapy for three more weeks.
Why this happened on this first day of hope is what I can’t make sense of. I try not to believe in a punishing divine force, but when I was told to expect three months of pain and limited mobility, I felt sort of like I was being persecuted by my very own personal storm cloud. I remind myself that events unfold whether or not we want them to, whether or not the timing is right. I’m trying my hardest to be graceful, to use the green tendrils of hope that were unfurling in my tight chest as a way to make it through the crappy ankle situation and the upcoming new treatments. I’d like to say that I’ll just put one foot in front of the other and walk through this with aplomb. But it’s more likely I’ll be shuffling. And that’s OK too.
Thank you for the many kind comments and e-mails to my previous, bleak posting. As those of us with on-going illnesses know all too well, sometimes the street lights go out in chronic town. And the house lights. And the night lights. I fumble in the darkness, peer into blackness and see strange and terrifying shapes. Although I believe it is essential to look at the darkness, I can look too closely. And this is just as devastating as if I went outside and stared at the sun. You readers, along with all you people in my life who prop me up and listen to me cry on the phone or watch me cry into my pillow, catch me before I’ve gazed down into the inky abyss for too many days and lost my ability to truly see.
In a few hours, I will arrive in Cincinnati, Ohio, assuming all goes well with my airplanes. I have lost my connection with the doctor I saw in Philadelphia. She had a new baby, and was working full-time outside the medical center where I saw her for the sarcoidosis clinic. At first I felt abandoned. Now, with the help of those who pull me back from the darkness, I’ve realized that in this loss, there is opportunity. I am going to meet with a doctor renowned for his work in sarcoidosis. While my Philly doctor was more conservative (prednisone, prednisone, and would you like some more prednisone with that prednisone?), this guy does more research on new therapies for sarcoidosis—especially for cases like mine, where the disease has affected multiple organs and isn’t responding well to conventional treatments.
I don’t know what I will think of him. I don’t know if he can offer me anything. I feel a little like Dorothy on a pilgrimage to find the Great and Terrible Wizard of Oz. But, like her, I figure it’s worth following this path to see him. After all, she made it home, safe and sound, even though he turned out to be a humbug.
So, keep your fingers crossed for me. That I have safe travels, that this new doctor has new ideas, and that these new ideas work. Or, at the very least, that I find my way home and see the light shining all around me.