Thursday, February 28, 2013
Back Up to 20
I finally called my oncologist in NYC today and he told me to go back up to 20mg of prednisone. When I see him in 10 days, we'll discuss other treatment options.
Wednesday, February 27, 2013
Positive Spin
I'm sitting here trying to put a positive spin on my current condition. I got up this morning. Had my usual cup of joe, strong and black. Checked email, read the on-line New York Times. Was happy to see my disability payment had been posted. The only negative is that I want to rip my skin off, a little self-flaying to begin the day.
The local oncologist said yesterday that he'd never seen a worse version of skin gvh. This was somehow comforting. It meant I wasn't being a whining baby unable to manage pain and suffering. He didn't have any new ideas and I didn't expect him to. I'm seeing my dermatologist and oncologist in NYC in 2 weeks.
The good news is that my blood counts are normal. Alk-phos liver enzymes went up a bit but that could be due to increased gvh in general.
I'm going to make some oatmeal and coat my skin with it.
The local oncologist said yesterday that he'd never seen a worse version of skin gvh. This was somehow comforting. It meant I wasn't being a whining baby unable to manage pain and suffering. He didn't have any new ideas and I didn't expect him to. I'm seeing my dermatologist and oncologist in NYC in 2 weeks.
The good news is that my blood counts are normal. Alk-phos liver enzymes went up a bit but that could be due to increased gvh in general.
I'm going to make some oatmeal and coat my skin with it.
Monday, February 18, 2013
This Is What Withdrawl Feels Like
I weep as I write this. Fortunately, I have no tears so I'm not drowning my computer.
On February 1, I tapered from 20 mg of prednisone to 15. I've been on the higher dose for over 2 years. I know I just have to stick with it and it will be alright. I have phantom pains, nausea, and find myself taking an ativan when things are particularly bleak. And oh yeah, I like to sleep. On Saturday, I napped for 3 hours during the afternoon. And I had company!!! It was family, but still. I have to drag myself out of bed in the morning because I don't want to remain a slug and not have to be a rational human being.
I should be looking forward to today but I don't. I have yoga, followed by a massage. Could it get any better?
I hope so.
On February 1, I tapered from 20 mg of prednisone to 15. I've been on the higher dose for over 2 years. I know I just have to stick with it and it will be alright. I have phantom pains, nausea, and find myself taking an ativan when things are particularly bleak. And oh yeah, I like to sleep. On Saturday, I napped for 3 hours during the afternoon. And I had company!!! It was family, but still. I have to drag myself out of bed in the morning because I don't want to remain a slug and not have to be a rational human being.
I should be looking forward to today but I don't. I have yoga, followed by a massage. Could it get any better?
I hope so.
Wednesday, February 13, 2013
Sick Day
I spent most of yesterday sleeping. This rarely happens to me, even when I was being assaulted by chemicals and radiation.
After taking my morning thyroid and lasix, I popped 500 mg of tylenol to ease the throbbing in my left side, a pain I've had on and off since Saturday afternoon. At the time, I blamed the pain on indigestion from a gryo I'd had for lunch. Three days later, I still had the pain on and off. I decided to diagnose myself using the internet. I tried to get an appointment at the recommended local internist but he's been on vacation since last week. Anyway, I discovered that the only organ on the right side is the gall bladder. Could I have a gall stone?
Aside from pain (I'll rank it a 6), I've had nausea and vomiting which could be leftover symptoms from the Vidaza I had last week. That doesn't usually happen to me, and I've had the injections five times over 5 months. The nausea became so extreme after a light lunch and some juice, I had to take an ativan. I slept a total of 6 or 7 daylight hours. When I was awake, I read a little and watched TV. Marty woke me for dinner, Chinese food, which I managed to eat. Soup and lo mein seemed to be what I wanted. I didn't eat a lot, but I felt better and didn't get nauseous. I took my handful of pills and they stayed in place. I watched TV with Marty including the Westminster Dog Show. I don't even know what time I went to bed, but I fell asleep right away, a rarity. Of course I took zolpidem but I have to take that or I won't sleep a wink.
Regretfully, we were supposed to take Mark out to dinner for his birthday. Marty was wise enough to cancel this. We'll do it next week. The important thing is, I woke up this morning at 7:00 and felt pretty good. In the 2 hours I've been up I've had coffee, read email and the New York Times. I made granola, which is almost done, and I look forward to having hot oatmeal for breakfast. So far, so good.
After taking my morning thyroid and lasix, I popped 500 mg of tylenol to ease the throbbing in my left side, a pain I've had on and off since Saturday afternoon. At the time, I blamed the pain on indigestion from a gryo I'd had for lunch. Three days later, I still had the pain on and off. I decided to diagnose myself using the internet. I tried to get an appointment at the recommended local internist but he's been on vacation since last week. Anyway, I discovered that the only organ on the right side is the gall bladder. Could I have a gall stone?
Aside from pain (I'll rank it a 6), I've had nausea and vomiting which could be leftover symptoms from the Vidaza I had last week. That doesn't usually happen to me, and I've had the injections five times over 5 months. The nausea became so extreme after a light lunch and some juice, I had to take an ativan. I slept a total of 6 or 7 daylight hours. When I was awake, I read a little and watched TV. Marty woke me for dinner, Chinese food, which I managed to eat. Soup and lo mein seemed to be what I wanted. I didn't eat a lot, but I felt better and didn't get nauseous. I took my handful of pills and they stayed in place. I watched TV with Marty including the Westminster Dog Show. I don't even know what time I went to bed, but I fell asleep right away, a rarity. Of course I took zolpidem but I have to take that or I won't sleep a wink.
Regretfully, we were supposed to take Mark out to dinner for his birthday. Marty was wise enough to cancel this. We'll do it next week. The important thing is, I woke up this morning at 7:00 and felt pretty good. In the 2 hours I've been up I've had coffee, read email and the New York Times. I made granola, which is almost done, and I look forward to having hot oatmeal for breakfast. So far, so good.
Saturday, February 9, 2013
A Normal Medical Problem
Add podiatrist to my list of specialty doctors. The second toe on my right foot has been bothering me for weeks. It looked calloused on top and the nail looked funky. My problem is I can't see the back of the toe due to inflexibility. Marty looked at it and said there was a tiny blood blister that seemed to be fading into a bruise. My local oncologist said I should see a podiatrist.
It turns out that I have a mild case of hammer toe, meaning that when my foot strikes the ground, the top joint is bending just enough for the toe to hit the ground in such a way that I'm injuring it with each step. In my case, I only had a small sore, which the doctor carved out of my toe. At one point, he asked if he was hurting me and I said no, I have neuropathy. No wonder you're not feeling this. He carved a bit more until I started whimpering slightly. He bandaged up the hole and put a device on the toe which will help keep it in the right place.
To have a minor medical issue unrelated to leukemia was not just a relief but a sign of normalcy. I didn't exactly put on my dancing shoes, but I was mildly happy, albeit resigned to the continuation of middle age meltdown.
It turns out that I have a mild case of hammer toe, meaning that when my foot strikes the ground, the top joint is bending just enough for the toe to hit the ground in such a way that I'm injuring it with each step. In my case, I only had a small sore, which the doctor carved out of my toe. At one point, he asked if he was hurting me and I said no, I have neuropathy. No wonder you're not feeling this. He carved a bit more until I started whimpering slightly. He bandaged up the hole and put a device on the toe which will help keep it in the right place.
To have a minor medical issue unrelated to leukemia was not just a relief but a sign of normalcy. I didn't exactly put on my dancing shoes, but I was mildly happy, albeit resigned to the continuation of middle age meltdown.
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