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."
Sunday, September 23, 2007
Saturday, September 8, 2007
Start yer Engines!
Cause I started treatment today!
I was supposed to come in to Dr. Khanna's office and to get an EKG on Thursday at 10, so I prepare to leave at 8, because, well, this is LA and well, you know... Anyway, Tina the nurse calls me as I'm about to leave saying she's horribly ill and isn't going to make it to the office. Since she's doing the last minute blood draws and such, she asks to reschedule for tomorrow.
(Disclaimer: Yes, I feel bad when someone's sick. She's a nurse for Pete's sake and shouldn't be working when she is ill!) So I'm slightly irritated. Is there no one else who can draw blood in all of UCLA? I want to start! Friday rolls around and I don't get a call before I leave, so I head out for the 1-2 hour commute to UCLA. Around 9, I'm halfway there when Tina calls. She is still sick and Dr. Khanna said she should be there for this so can we reschedule for Monday? An hour's notice for a cancellation? Funny, but I don't know too many doctors who would be ok with that if one of their patients canceled on such short notice.
At first, I say ok, but then I put my foot down. I call Dr. Khanna about the situation and he's fine with me coming on in. They really are great here, I just think that communication could have been better. I go on in, fill out a questionnaire, jump through a few more hoops and am given my Gleevec. Dr K. informs me that I've just been given $10,000 worth of medication! I briefly toy with the idea of turning the medication into cash, but decide against it and head down the hall for some final tests.
The tests aren't much, just a couple of blood tubes and a urine test. My urine shows a trace amount of protein, so I'm told I have to do what's called a "24 hour urine." I'm relieved to find out that I don't actually have to pee for 24 hours straight, but what I am asked to do is fun nonetheless. I'm given what looks like a plastic gas can - I'm to to collect my urine in it over a 24 hour period. I'm also given some kind of toddler potty seat to be placed over the toilet so I don't forget - let's hope Matt doesn't forget to move it when it's his turn! I'm also supposed to get some kind of "pee cooler" since the, ah, specimen must be kept chilled. Do they sell those at Costco? "Pee coolers? Yeah, over on aisle 6..."
Loaded down with urine-related apparatuses, I head over to the lab for the EKG. I check in and - get this - take a number. I'm given a ticket that I could probably take over to the local deli and receive a ham on rye. My confidence is not exactly soaring at this prospect - where are we anyway? McLab? The test itself is pretty easy, though, and I'm done for the day.
So, back to the medication. Took the first dose this morning, and am happy to report that thus far, everything seems fine. Not sure what I expected - maybe that I would swallow the pill and instantly projectile vomit - but so far so good.
I was supposed to come in to Dr. Khanna's office and to get an EKG on Thursday at 10, so I prepare to leave at 8, because, well, this is LA and well, you know... Anyway, Tina the nurse calls me as I'm about to leave saying she's horribly ill and isn't going to make it to the office. Since she's doing the last minute blood draws and such, she asks to reschedule for tomorrow.
(Disclaimer: Yes, I feel bad when someone's sick. She's a nurse for Pete's sake and shouldn't be working when she is ill!) So I'm slightly irritated. Is there no one else who can draw blood in all of UCLA? I want to start! Friday rolls around and I don't get a call before I leave, so I head out for the 1-2 hour commute to UCLA. Around 9, I'm halfway there when Tina calls. She is still sick and Dr. Khanna said she should be there for this so can we reschedule for Monday? An hour's notice for a cancellation? Funny, but I don't know too many doctors who would be ok with that if one of their patients canceled on such short notice.
At first, I say ok, but then I put my foot down. I call Dr. Khanna about the situation and he's fine with me coming on in. They really are great here, I just think that communication could have been better. I go on in, fill out a questionnaire, jump through a few more hoops and am given my Gleevec. Dr K. informs me that I've just been given $10,000 worth of medication! I briefly toy with the idea of turning the medication into cash, but decide against it and head down the hall for some final tests.
The tests aren't much, just a couple of blood tubes and a urine test. My urine shows a trace amount of protein, so I'm told I have to do what's called a "24 hour urine." I'm relieved to find out that I don't actually have to pee for 24 hours straight, but what I am asked to do is fun nonetheless. I'm given what looks like a plastic gas can - I'm to to collect my urine in it over a 24 hour period. I'm also given some kind of toddler potty seat to be placed over the toilet so I don't forget - let's hope Matt doesn't forget to move it when it's his turn! I'm also supposed to get some kind of "pee cooler" since the, ah, specimen must be kept chilled. Do they sell those at Costco? "Pee coolers? Yeah, over on aisle 6..."
Loaded down with urine-related apparatuses, I head over to the lab for the EKG. I check in and - get this - take a number. I'm given a ticket that I could probably take over to the local deli and receive a ham on rye. My confidence is not exactly soaring at this prospect - where are we anyway? McLab? The test itself is pretty easy, though, and I'm done for the day.
So, back to the medication. Took the first dose this morning, and am happy to report that thus far, everything seems fine. Not sure what I expected - maybe that I would swallow the pill and instantly projectile vomit - but so far so good.
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