Good News

June 9, 2006 at 1:28 pm (Uncategorized)

Yesterday morning before I left the house, Andrew gave me a good luck drawing to take to my doctor’s appointment. It looked like a spirograph of vivid pinks and purples. “That is breakfast,” Andrew told me, when I asked him what he had drawn. “There’s the sausage, and there’s the egg,” he added, as he gestured at two particularly dense hot pink squiggles. The boy certainly draws what he loves — protein sources. And he certainly can make his mother cry. I felt like my heart would burst when he handed me that picture. He is overflowing with sweetness.

Andrew’s picture worked its charm. For the first time in a long time, I got good medical news. From now on, whenever I leave for an important doctor’s appointment, I’m propping Andrew up in front of his easel first. Maybe if he drew me lunch and dinner I’d be completely cured.

I met with the cardiologist who works with the pulmonologist who specializes in sarcoidosis at the University of Pennsylvania. I often think back fondly to the days when I had only one doctor, instead of a team of physicians each specializing in one organ of my body. I liked Dr. Brozena, the cardiologist, tremendously — and not only because she said that I could try another prednisone taper without immediately adding another toxic drug to the mix; without soldering metal to my heart in the form of a defibrillator; and without cutting away bits of my heart muscle to biopsy. She was funny and thorough and listened to me. She rightly assumed that I knew a lot about my disease and didn’t seem a bit put off by my three-page list of questions. Plus, she likes fly-fishing in Montana. Wow – I’m surprised they haven’t taken away that woman’s medical license yet.

Her plan is to cut down my prednisone even slower than last time, when I failed to get below 20 mg. For the first month of the taper, I’ll have to wear a monitor to check for any weird heart rhythms. If things don’t go well, the other three options will come out of the pantry and be back on the table. I’m having a stern chat with my heart as I write. “Now listen to me. You better behave. Don’t blow this again.”

It’s been a while since I’ve gotten good news, so I’m not sure exactly how to act or feel. I am relieved and thankful that I’m not being operated on right now. I feel grateful for finding a pair of physicians in Dr. Wasfi and Dr. Brozena who I like and trust and who have, for the first time in a over a year, given me a plan. I am hopeful that my health will continue to improve, that the sarcoidosis in my heart will go into remission, and that in a year or two I’ll look back on these times through the funhouse mirror of distance and think to myself that it all was a bad dream.

But I’m not dancing around the hotel room with joy. If there’s one thing I’ve learned after two years with this weird sickness, it’s that steps forward often are followed immediately by a backslide. If you hope too much and invest every small gain with too much significance, you won’t be able to bear it if things take a turn for the worse. I’ve learned that the hard way.  So my optimism is measured.

Perhaps I’m being too grumpy or pessimistic, but I’m still figuring out how to have a chronic illness and not make myself crazy. One key strategy is to do as I always have on long hiking trips when I’m exhausted and still miles from the campsite. I look at my feet and focus only on putting one in front of the other. I don’t think about the trail or whether I’m climbing up or down; I just keep on plodding. Yes, I can barely wait to drop down a tiny bit on my prednisone. But I know that it’s likely a windy, hilly path ahead. I need to return to Philadelphia in three months for more testing, including new neurological work to address my numb leg. One foot in front of the other.

Before we head home to Montana, we’re spending the weekend in New York with two of Andrew’s three Grandpas. We’ve promised Andrew horse rides in Central Park along with hot dogs and maybe a trip through the new miniature Victorian village. I’m happy with my good news, but my goal is to forget about all the health stuff — positive and negative – for the weekend. I just want to be a tourist.  And the mother of the best (and sweetest) little artist in the universe.

1 Comment

  1. Nedra said,

    Yay! One foot in front of the other. This is a swell little entry for sure. Life is SUCH a process, I’m just struck anew about that, and how accepting that one foot in front of the other is just a huge human achievement.

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