Yes, I am most remiss in my duties.
I haven’t a cell phone. Lost it in the laundry. So you’ve been sending into the void. Or maybe I can use some online tool to access the txt’s at Verizon. But don’t think I’m hating on ya. Email’s please.
At at that, I get to my laptop last thing in day. Medical first, guests first, getting some time away from my room second if possiible. Internet last.
I bet you this doesn’t suck.
Today we had a little party with pretend raspberry champagne! Day +29 was a good day.
Wbc = 1.4, that 1400 out of 4000. Doubled! And 1000 was the threshold for going outside my room. I. Went. Outside. The. Room. Walked down to the rec room and painted on a wooden plane model.
Definitely, one of them babies stem packs has moved into the bone marrow and has enough gumption to churn out some cells. I get reds many days and platelets daily but there’s only one place to get those smart and deadly whites, the bone marrow. I am so happy. Three cheers for science!
Summary: Slow and steady is gonna win this race. White count is moving, hooray. Bowels are angry, boo.
Calendar: Over one month since my admission on May 2nd. Day +27 post infusion.
The Key: White blood cell counts are, at long last, rising.
This week… 0.3, 0.3, 0.3, 0.3, 0.6, 0.4, 0.6, 0.8
Yes, that 800 units per microliter poking it’s bald head over the horizon. I gave Dr. Grover the high five. At 1000 I can leave my room and go for a walk around this floor of the hospital. I pretty much need whites up to lower the antibiotic dose to grow back healthy gut flora.
Bowels: Angry, angry, angry. Diarrhea day 11. It doesn’t need saying but, this is getting really old. Cramps are nasty. Brutish. At least now I have The Shiny Candy-Like Button that delivers dilaudid on demand.
Outlook: The doctors are cautious and no dates are being offered for getting out of the hospital. But they say ‘good’ most days.
Skin: I have a slight and harmless rash, no itching, which is a good sign that the new immune system is waking up. I am bloated like soggy breakfast cereal and need to drop a couple of liters. My weight is 92 kilos which is quite a bit more than I weighed when I moved in at the start of May.
Weariness: The fatigue is serious. A shower is a lot of effort and I rest afterward. Talking wears me out in about ninety minutes. Physical therapy is just some steps, walking in place and sit/stands, about 20. But I get a bike TODAY (woo hoo!) so I can massage my bowels and hopefully build some strength. I am frequently advised to Take It Easy.
Sleep and Steroids: I’ve been getting broken up but sufficient sleep and that’s despite a medium dose of steroids twice a day. If the bowel thing turns out to be double trouble, c.diff plus graft vs host disease (GVHD), they will go to the high level dose. Steroids help mitigate the symptoms of GVHD.
Entertainment: If there’s one thing I know how to do, it’s keep busy. I get cards by surface mail and send em. Learning the Uke. Strategy game with friends over the net. Tons of music time. Meditatation/Visualization after phone calls, shower or just to ward off irritability. Quite a pile of pretty folded paper here now. Wrote a ropey math program for the browser, just for fun.
Vistors: Mom every day. Dad’s been having coughs and I haven’t seen him much in the last couple of weeks. Judy once a while ago. Zannie tomorrow! I’m still very vulnerable so, no, you can’t come see me.
So I’ve been suffering a minor plague the last week : diarhea. A history of my challenges appears at the top of the blog under “medical status.”
Why? What’s causing it? Is it Graft vs Host disease? A bug?
After so many tests from so many places, the word is out! c.diff
A bug that’s pretty common in hospitals but a problem for people with long stays who are on anti-biotics. Your gut has helper bacteria that can keep c.diff away but mine are pretty knocked out and I’m vulnerable. Here’s an article about the critter:
The answer? Another kind of anti-biotic. So far I’m still liquid and crampy. It’s trouble, them bacteria.
Dr. says, “No, you won’t be out of here on the 4th.”
My white count remains 300 to 500 where 4000 is good.
How are you?
I’ve been better. Yes, understatement. Given the circumstances, I’m as good as can be. Really. The last 48 hours were the best since becoming an in-patient on the 2nd of May. Today is infusion+16. The doctors are very happy with my progress. I’m eating, paring down the steroids and IV foods and feeling like that guy I know and love. Still a ways to go. Last night was pretty uncomfortable but no worse than some tylenol could handle.
How are your parents?
They picked a great trailer park, the reservoir at San Dimas. Healthy and happy but weary from traffic, it takes them 20 to 45 minutes transit. The trailer offers super tight quarters compared to the house in Hanford. They visit every day and mom makes me egg salad which when I was a kid we called Egg-In-A-Bowl. The mustard is a nice crisp flavor for me and eggs digest well. They are encouraging as always. They just watched me sleep mostly at the beginning of the month but lately the conversation has really picked up I think due to my brain coming back online.
My Dad made a simple list on the whiteboard. 1. Feel better. 2. Get well. 3. Get out. 4. Get home. Number one is accomplished. Number Two is in progress and Number Three is tentatively to be June 4th. I’ll move to a cottage on the hospital property and be out of the hospital. I can then wander some gardens and get fresh air though still avoiding germs and hazards. I’ll have room for projects larger than a hospital bed and that’s anticipated to be about The Uke and The Guitar and The RC Helicopter.
What are you eating?
Peach yogurt. Protein bars. Egg salad. Ensure beverage. Resource Breeze beverage. I had a french dip (half) and it hurt. Not again. Crackers. Water. Lots of nystatin and biotene (mouth care products to prevent uclers). Altoids. Keeping weird flavors at bay also minimizes nausea cues.
How’s the sleep?
Broken. I’m awake at least a bit most hours. If I get a 90 minute stretch, that’s awesome. Three of those I consider an excellent night. The steroids play hell with my mind which I like during the waking hours and dread for sleeping. My pride keeps me from having them knock me out with benadryl or ativan. I want to be healthy all on my own! It’s working. And we’re dropping the steroid levels a third again today.
What’s on your mind?
Writing python to generate scripts to generate stills of a movie. Very math heavy. The happy downfall of the Heartland Institute. A very hot indy 500 ahead. Tons/Ooodles/Huge Love and Anticipation of Joy for my friends headed to Lightning in a Bottle Music Festival down here in Silverado this weekend. The awesome Sky Alchemist game. California doubled the eligible number of solar roof tops for net metering. Book Sex at Dawn. There’s going to be mad mad mad fireworks in SF on Sunday for the 75th birthday of the Golden Gate Bridge.
What are you looking forward to?
Judy is visiting today!
Okay, what am I doing?
Yeah, besides the bio-management, drug fuss n vitals taking, doctors and such.
Okay, I’m learning Ukelele. Some kind sirs sent a delightful cute one to me the first week and the Music Therapist taught me four chords. Camptown Races! I’ve Been Working On The Railroad! Are You Sleeping Brother John? My first big goal is “Raindrops Keep Falling on my Head”.
Also I’m learning electric guitar. I brought a PS3 and video projector. With the gift of full electric from the Krossa’s with a game, RockSmith, I’m learning to play six string.
I listen to much music. I brought a sweet sound system that vibes the whole room. I have a dozen or two Pandora stations. I search for happy love songs on grooveshark to share with Judy-love. I have a few thousand songs on iTunes. And internet radio. We live in Posh Times for our ears.
I’m writing a program that will eventually make art movies. Hard to explain just yet. I write in Python on my macbook using vi.
I’m playing in two games that look like Risk but are really Diplomacy on Warlight.com with a bunch of friends. It’s turn based so I only make moves about every other day.
I’m super into this new game, Sky Alchemist, for the mac and PC. It’s like a tower defense game except you make a chemistry lab that extracts matter and converts it to the phase and purity needed to win the level. NERD-A-LICIOUS!
For fuzzier brain times I do “Penny’s Fill-In Puzzles.”
I write in my journal. I blog. I ponder. I dream the dreams of entrepreneurs who want a better world.
Sometimes I just stare north at the mountains out my 4′ wide window.
I fold origami and give it away.
The OT and PT people together exercise me and keep the strength and balance up. I’m pretty whacked but I do what I can.
I have not yet turned on the TV and it’s going to be a point of pride that I don’t.
I’m reading Maggie Koerth-Baker’s new book “Before the Lights Go Out” about energy and civilization.
Lotion on my head feels really good. So do eyedrops.
I get snail mail some days. I’m sending pipe cleaner art to my bestest pen pals, the Jankowski’s.
Bear in mind that I was a poisoned puking protoperson just two weeks ago and a fevered zombie last week so it’s a lot of little things. Today, blessed today, I could actually feel the Greg-ness. Like being home from work, sick, and getting into that box of toys I’ve been thinking about. Mostly prior times have been coping and a bit forced in recreation or caving to sleep.
Then came the steroids. WOOT. But now broken sleep.
I wished I’d brought my floor lamp. Dorene even reminded me! And earplugs are the most essential item.