I have returned from a medical vacation. Other people use their paid leave to take cruises to Mexico, go to Disneyland, camp in national parks, or schedule cooking classes in Italy. Not me. I subject myself and my little family of three to doctor holidays. Why head to Paris when you can go instead to Philadelphia and have your sinuses scoped or your heart’s inner working captured on MRI?
Perhaps I could share my experiences with others by launching a specialty travel business. After all, there are dozens of other niche travel sectors, and many of them are overloaded to the point of seeming passé. Gay and lesbian bed and breakfasts are so done, as are eco-tourism adventures, or singles cruises. Plus, the boomers are aging and sickening, while the rest of us seem to be coming down with newer and weirder stuff. All this provides a perfect market niche for the ill traveler: the well-tested traveler, the connoisseur of both fine dining and fine hospitals, the voyageur intent on remaining alive, no matter how many frequent flier miles required. (Sadly, my half-baked idea is neither ironic nor untrue. I’ve read that some insurance companies are sending patients to India or Thailand for medical procedures, such as knee replacements, that require more than a couple of days in the hospital.)
We had a good medical vacation. By this, I mean that both the medical part of the trip, as well as the family vacation aspect, were successful. From the otolaryngologist (keep this fancy name for an ear, nose, and throat specialist handy for your next Scrabble game), I learned that I have no underlying structural sinus defect causing my numerous sinus infections. Instead, I’ve been getting sick from a combination of exposure to infection (thanks to my three-year-old germ incubator named Andrew), a compromised immune system (thanks to my regimen of prednisone and Remicade, each of which turns off part of my immune system), and environmental triggers (thanks to the smoke and ash from Montana’s numerous forest fires). The good news is that I won’t need to have sinus surgery—the thought of which alone is enough to give me a headache. The bad news is that there’s no magic solution to my trouble. I’ll need to keep plugging along with sinus rinses, obsessive hand washing, and periodic antibiotics.
As for my sarcoidosis, the news was, while not exactly good, certainly not bad either. However, a few years in chronic town have taught me that tepid assessments like these are truly causes for celebration. From the cardiologist, I learned that the sarcoidosis in my heart has remained stable. All the different tests of my heart were exactly the same as they were six months ago. Of course, we’d all like to see my results return to normal. But it is good to know that even though the disease has been more active in other organs, it has not accelerated in my heart.
The pulmonologist who oversees my treatment was the last doctor I saw on this medical vacation. As always, she spent well over an hour with me, and didn’t bat an eye when I pulled out a list of twenty-odd questions for her to answer. Because she has been treating me since I was first diagnosed with cardiac sarcoidosis, she is able to look at my current symptoms with a long view. Not only does our shared history allow her to discern what’s new and important with the disease, but it also provides her with a sense of my personality. By knowing who I am, she can measure the disease’s effects on my both my body and my mind more accurately. I am grateful that I landed in her office during the early days of my disease.
The pulmonologist was quite honest that my treatment has clouded the view of my disease. It’s hard to figure out right now whether it’s the sarcoidosis or the after-effects of prednisone that are causing some of my current problems. The prednisone, along with the extra pounds I’ve gained since starting the drug, have elevated my blood sugar, thinned my bones, and could be contributing to some of the fatigue, discomfort, and hot flashes I’m experiencing. Her goal is to lower once more my daily dose of prednisone. But rather than focus on getting me off prednisone at this point, she wants instead to stabilize me at a low level of prednisone. Her opinion is that by trying at all costs to eliminate prednisone, we run the risk of letting the disease flare, which would require a boost to a higher dose—and a repeat of the cycle. Her idea is to break the cycle so that we can determine whether the more powerful infusion drug, Remicade, is working and worth all the expense and potential risks.
Her major point is that my medical life has been too chaotic lately. As soon as I started Remicade (and had positive results), I was accidentally burned and had to halt the infusions. After that, I was sick every other week with a new sinus infection. Again, this made my infusions sporadic. With all this starting and stopping of Remicade, with all the periodic physical traumas like third-degree burns and broken bones, with all the upping and downing of my prednisone (5 mg. one day, 40 mg. the next), it’s hard to discern what’s cause, what’s effect, and what’s random.
Her plan makes sense to me. I’ve even agreed to her recommendation to limit non-medical traveling and thereby make every possible effort to avoid disruptions to my Remicade. Staying put will hopefully reduce my exposure to other variables, like the car crashes, burns, and infections that unfortunately seem to characterize my life. Jay and I had been planning a long trip to back to Palau (an island nation in Micronesia) and other points in the Pacific this fall, but the doctor is right that it’s too risky to fly halfway around the world when I feel too sick most mornings to get the mail. (Sometimes the best thing a doctor can provide is a dose of common sense.) So, we’ll stay home, wash our hands to keep the germs at bay, and pray that chaos doesn’t come knocking.
Our medical vacation even had some actual vacationing. We spent some time at the beach, got to visit with grandparents, uncles and aunts, and to meet Andrew’s adorable new cousin. We ate Vietnamese food, Ethiopian food, Chinese food, Indian food, and sushi (do you get the sense that we’re lacking good ethnic restaurants in Montana?) Andrew rode the swan boats in Boston, attended his first Red Sox game, and saw the Patriots play football in training camp. We went to the Maritime Museum, in which Andrew got to operate a miniature gantry crane, and the Please Touch Museum in Philadelphia, where Andrew dug up vegetables. We rode on airplanes, buses, trains, subways, and taxis. I consider all our busyness a success, since I’m fairly certain Andrew didn’t even notice all the times I disappeared to the hospital.
And now we’re home. We arrived with photos and ticket stubs from museums, new toys from doting relatives, and t-shirts from every Boston sports franchise. I wish we had arrived as well with stunning new treatments for my disease—a single pill to eliminate all my woes. But what I have is enough: a sensible plan for surviving the next six months. Like so many other aspects of living in chronic town, medical vacations aren’t about extravagance. The vacation didn’t involve an elaborate cruise, but simply a diminutive crane at a maritime museum. And the medical part wasn’t too fancy either—simply a plan is to eliminate drama, reduce variables, and stay as well as I can. It’s not a trip up the Eiffel Tower, but I’ll book this trip again.
I apologize for my long absence. My silence hasn’t solely stemmed from my habit of avoiding reality by not writing (or thinking or talking) about it. There’s been a lot happening on my street in chronic town.
I am typing this in Boston. My routine appointments with my sarcoidosis specialists in Philadelphia became suddenly less routine when I contracted what seemed like an incurable sinus infection at home in Montana. Suddenly, all the various physicians that meddle in my care found it utterly necessary that I see a sinus specialist right away—like yesterday. The appointments lined up in such a way that it made sense to travel East earlier. We’ve decamped to my husband Jay’s childhood home in Boston between Philadelphia appointments and testing. We’re hoping to sneak in some beach vacation, although my three-year old son, Andrew, has contracted a bronchial version of my intractable infection, and, given his wracking cough, we’ll stay in the civilized suburbs until he’s well.
I can’t say that I minded leaving home for three weeks. Our entire state seemed to be on fire—literally. 40,000-odd acres of forest down the highway from our home were ablaze, and every new day brought news of yet another fire igniting somewhere in Montana. I’ve survived bad fire seasons before. In 2000, we awoke most summer mornings to find a blanket of ash on our skylight window and our car windshield. But we kept on plugging away at our daily routines then. Idiot that I was, I even continued training for bike races by going for sixty mile rides in virtually opaque air. (And I wonder how I got sarcoidosis?) However, before this year, I’ve never before had to contend with campfire air and particulates in my lungs while simultaneously inflicted with both a chronic pulmonary disease (sarcoidosis) and a chronically busy boy who hates being confined for more than 5.5 minutes (Andrew). I was a prisoner of our home, and because I was worried about Andrew developing asthma or sarcoidosis or God knows what else from the disgusting air, I made him one too (albeit, a very unwilling one.) Before my parents and my sister took pity on our sweating and suffering and purchased and installed a window air conditioner, we were braving the visible air and ninety degree temperatures by staying in a hotel. Then, my friend Leah, who shall have my gratitude forevermore, loaned us her spacious, centrally air-conditioned house when she and her family were out of town. Without this greater (chilled) real estate, I would have gone completely bonkers. As it was, I was about 75 percent bonkers when we decided to head east and drown our sorrows in doctors’ appointments. Somewhat miraculously, my sinuses cleared once we left behind the flying ash and the air that sears lung tissue.
I haven’t met with the crucial doctors yet. That comes in the next two weeks, when I revisit with the ENT after he looks at some test results, and when I see both my pulmonologist and my cardiologist. I’m nervous about those appointments. As far as I’m concerned, my treatment isn’t going smashingly well, and I want to take a hard look at what should come next. Call me picky, but my sarcoidosis is out of remission, I have high blood sugar from all the prednisone, I have a broken foot because of all the prednisone, and I have no immune system because of all the prednisone and the Remicade. I know the white coats will urge me to stay the course. They will probably agree that it’s pretty lousy that sarcoidosis treatments carry such significant side effects—like having your feet break under you and your blood start to resemble cake batter—but that this is all “we” have. I know I need to ask them tough questions and be prepared to say I’m not happy with my current state of health. But I also know there’s really nothing left for them to try. I must negotiate a fine line between seeking more information and understanding about my disease and my prognosis and simply whining and venting about side effects. I must not lapse into the latter—for both my sake and theirs. For me, I need to be clear-headed and optimistic (but still remain realistic), and they need to know that I am still a part of this treatment program, no matter how difficult I find it and how much I am seized with doubt. I don’t want them to toss me aside on the slag heap of chronicity. I don’t want them to think, or to commiserate to one another, “She’s incurable, and a complainer, too! Get in, and get out. And don’t waste any new ideas on her. Just give her the old prednisone.” I know I’m being silly and paranoid—mostly—but there is some truth to my anxiety.
I’ve got a few days before my next appointment. This gives me time to come up with a list of talking points to bear with me into doctors’ offices; this gives my sinuses more time to heal; this gives Andrew time to unwind and visit with his grandma; this gives me time to focus on the internal fires ignited by my disease and my worries. At least these fires don’t leave ash on the windows.