Archive for May, 2012
Dr. says, “No, you won’t be out of here on the 4th.”
My white count remains 300 to 500 where 4000 is good.
Raindrops keep falling on my head
And just like the guy whose feet are too big for his bed
Nothin’ seems to fit
Those raindrops are falling on my head, they keep falling
So I just did me some talkin’ to the sun
And I said I didn’t like the way he’ got things done
Sleepin’ on the job
Those raindrops are falling on my, head they keep falling
But there’s one thing I know
The blues he sends to meet me won’t defeat me
It won’t be long till happiness steps up to greet me
Raindrops keep falling on my head
But that doesn’t mean my eyes will soon be turnin’ red
Crying’s not for me
Cause I’m never gonna stop the rain by complainin’
Because I’m free
Nothing’s worrying me.
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!
Once nice thing about computing from the hospital bed, there are always tons of free screen wipes around. Alcohol swabs are stacked around like snow drifts as the nurses use one to eight every time they change my pipes or draw blood. My screen has never stayed so clean.
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.
Come now, don’t be silly. Tell us what you really do.
Nurses are pushing them on me or I’m begging for them. Adjust your creatine, adjust your magnesium! Step right up, prevent graft vs host disease. Pain relievers. Get your nausea suppressors! Vitamins. Fever suppresion. Protect the liver. Deliver lipids. Accelerate cell production. Ward off rashes!
When the drugs are working I’m so full of thankfulness and when they’re not I am laid out flat or curled up fetal. Or wretching. Or having the shakes so hard I fear for my teeth. I spend hours just holding still because moving or talking may bring on a fit of nausea. Go to my happy places. Meditate.
It’s day +9 and they still don’t know why I’ve had this fever for three days. Fever symptions are nearly as bad as nausea but it makes me stupit. I know the temp is down a bit now because I’m writing! Also, don’t have icebags in my armpits and I’m not trying the sweat off my skull.]
Thanks for all the love, peoples. Some is here in these comments and some by mail, all good. Thank you.
Fever 39.4 C. My eyeballs are too big for their sockets.
Can I have a visitor? Can I leave my room? Am I progressing? Do I need blood? Are my kidneys safe?
The numbers that rule my life come out twice a day. The main draw’s always at midnight.
Whites 0.1 on a 5.0 scale. Very vulnerable right now.
Hematocrit 27.2. I don’t get transfused til I’m under 25 which is most days.
Platelets 40 of 150. ”Don’t blow your nose” when under 50 they say. 20 is the trigger for a fresh bag
Other numbers determine the level of TPN (IV food), magnesium supplements and the flow rates for any of six or seven bags of sterile goo hanging on my IV pole.