Not a Gleeful Visit

Well, it's been over 2 weeks on Gleveec and I'm doing....not bad....I have some nausea and other fun symptoms (rhymes with "schmy-arreah") but all in all it could certainly be worse. My dosage got upped from 100 to 200 mg - I think every time the dose increases it will be like starting over in regards to side effects.

My visit on Thursday through me for a loop. First off, I had completed the "24 hour urine" a couple of days prior to my visit as instructed. If you ever truly want the "hobo experience," I suggest walking around with a container of your own urine sometime. I found out at my visit, though, that I didn't need to do it! I swear - Alan Funt or Ashton Kutcher (depending on your generation) must have lurking around with their hidden camera for this scene: "Ha ha! We'll get Kim to - hee hee! - pee in a container for a whole day then drive to UCLA with it!!! (Gales of laughter)" Yep, turns out my urine is just fine, thank you very much....

Then I expect business as usual, but the nurse tells me she wants to introduce to a couple other patients who are there. One has had scleroderma for 2 years and the other for 20. Now, I don't know about most people, but when I'm at the doctor's office, I'm really not there for Social Hour. Something about peeing in a cup, getting my blood drawn multiple times and wearing a paper dress doesn't inspire me to make new friends. I'm sure there's a great scleroderma community out there, but can't I just meet them at the next walkathon? I don't want to seem rude, though, and agree. First we meet the long-term patient - we "meet" her by barging into the exam room while she waits for her doctor.

I'm taken aback. She is in a wheelchair, and I learn that she lost her kidney from the disease - she had a transplant. Her hands are completely curled under and her face has a startling pinched look. Granted, she didn't have the medical options that are available to me now, but I'm in a panic thinking "This is what this disease can do." Sure, I've read about what can happen, but seeing it 2 feet in front of me was another story. I have no idea what to say to this woman - "Way to go!"? I'm sure meeting me wasn't exactly a picnic for her either - "Gee, thanks for bringing in this (relatively) healthy-looking, (relatively) younger woman to gawk at me." I know the intent was for me to feel inspired, but I didn't. Not at all.

Luckily, the other patient and I kept missing each other, so I didn't meet her. How horrible does this sound? I've turned into a complete tool! (Can a woman be a tool? Seems to fit here...) Hopefully soon I'll come around and seek out other patients for advice, guidance and all that - but for now I'm still very much in "processing mode."