Wishing Well From Hell

October 30, 2007 at 3:38 pm (Uncategorized)

Be careful what you wish for — even if your wish is ironic and self-mocking.

In my last entry, I wrote about “disease envy.” (In the process, I also used up a lot of oxygen. You’ll have to pardon me if you live in the Pacific Northwest and all of the sudden, the very minute I posted the essay, your trees and plants browned and your lights flickered.) Many of us with obscure illnesses like sarcoidosis often turn a jealous eye to the awareness and sympathy that diseases such as cancer and AIDS quite rightly garner.

The day after I posted “Green-Eyed Monster Seeing Pink,” I had a follow-up appointment with my primary care doctor. She’s been troubled by an enlarged lymph node under my arm and promised to consult with both my rheumatologist in Montana and my sarcoidosis specialist in Philadelphia about what, if any, further steps to take about the hard, little nodule. I wish I had some joke about three doctors, a lymphoma scare, and screwing in a light bulb to summarize the past few days, but I don’t. All I have is the lymphoma scare part. Given that Remicade, the current infusion drug I am taking for sarcoidosis, suppresses the very same immune cells that should be prowling my body and searching out and destroying lymphoma cells, the triad of doctors decided that I need a lymph node biopsy. One of them also mentioned that sarcoidosis patients have a significantly higher chance of contracting lymphoma than an average person. (If you have sarcoidosis, and didn’t know this statistic, I’m sorry for sending a storm cloud your way today.) Of course, my primary care doctor decided to convey all this information to me on a Friday at 5:14 P.M. There’s not a whole lot you can do from a medical perspective on a Friday at 5:14 P.M. except worry. Even better, after scaring the crap out of me, my doctor, as of Tuesday at 4:28 P.M, has not called me back to schedule the biopsy whose urgency I was assured of on Friday. Oh how I love those whacky doctors and their mysterious ways.

My solution to most worrisome medical news is to forget about it. So on Saturday, rather than brood about the fact that Remicade has made the chance of me getting lymphoma six times higher (OK! I admit I did a little extra Internet research to freak myself out even more before fully delving into the process of ignoring the problem), we hosted a Thomas the Tank Engine-themed party for our almost four-year-old son, Andrew and three of his same-age buddies. Before the party, Andrew, Jay, and I baked and decorated a train cake; we cleaned the house (or, at least, shoved the most trip-able piles of miniscule Legos into closets; and we covered a table with lots of newspaper). Once the wee ones arrived, we let them go wild painting ceramic trains — and most of themselves. In my opinion, though, the party’s pièce de résistance was the baking session. Four pre-schoolers made cut-out sugar cookies and then decorated them with frosting and sprinkles. I had planned for them to make locomotive cookies with the brand-new train cookie cutter (in keeping with the train theme) I forced my frugal husband to buy, but no one had much interest in matters thematic and were much more focused on using the Halloween cookie cutters. We ended the party by smashing open a witch piñata and sending the children home buzzing with refined sugar from five sources: cake, ice cream, cookie dough, the sprinkles that were furtively shoved into small mouths when I turned my back for three seconds, and piñata candy.

My plan worked brilliantly. I didn’t think about lymphoma or Remicade for the entire party, or for the three hours it took me to sweep up the ant-mound sized piles of sprinkles decorating our floors. Plus, Andrew had consumed so much sugar, I’m pretty sure his blood had turned into maple syrup. Or else, we unwittingly fed him rocket fuel and that explained the forty-five minutes of bed bouncing at 10:00 P.M. Whatever the cause, refraining from murdering my son occupied all my worries until he fell over in bed, mid jump, asleep before his little blonde head was fully on the pillow.

Unfortunately, running from problems only works if you’ve got a good pair of feet to carry you. I’m still in a cast for my stress-fractured foot. The break is not healing, so the doctor ordered me off it and even sent me home on a scooter to make sure I won’t walk around the house too much. (I can’t use crutches because my arm and neck are still damaged from last year’s car accident.) I figured that I could disobey the doctor for one day in the name of all that is Thomas and sugary. But being up for the party cracked my new cast, caused me a lot of pain, and sent me back to bed with only my thoughts and fears (and a couple of good books) to occupy me.

I’m sure the talk of lymphoma is yet another tempest in a teapot. I get so much blood drawn that if I had cancer, how could it evade the constant lab work performed on me? But life in chronic town is a careful life. Its citizens get tested more than the normal folks, probably mostly because we are examined more by doctors. Small abnormalities that would ordinarily get a “wait and see approach” are taken much more seriously in chronic town. I know this. I know I’ll be fine. But I can’t help worrying and wishing that I hadn’t made my sarcastic plea for a more recognizable disease.

1 Comment

  1. barb said,

    One word for these situations..shit!

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