Greg, How Are You?

Commemorating Greg’s life

by on Aug.12, 2012, under Uncategorized

Friends, family, and loved ones —

I am sorry to report that Greg died on the morning of Saturday, August 11th, of complications from the medical treatment that was meant to cure him of cancer. In the last weeks his medical team worked hard and Greg kept his spirits up as they battled with an escalating number of problems that eventually overwhelmed him.

Not long ago Greg was asked to participate in an internet meme in which you try to define yourself in seven words. The words he chose were: “Offering you a lighter for your lamp.” That light has now gone out, but the many lamps it lit are still burning and through them Greg shines brightly in the world still.

8 Comments

No Cell

by on Jul.21, 2012, under The Days

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.

 

7 Comments

Rise and Shine Festival, GO!

by on Jul.19, 2012, under Caretakers Corner, The Days

http://thedolab.com/blog/event/rise-shine-gathering-a-conscious-living-event/

I bet you this doesn’t suck.

2 Comments

Where are we now?

by on Jul.15, 2012, under Uncategorized

Summary: Slow and steady is gonna win this race.  Very slow.  Very steady. White count is hovering.  Bowels are a battle ground. I’m getting photopheresis now, a sun tan machine for blood.  They pull out a volume and use light to kill specific troublesome cells.

Calendar: Over one month since my admission on May 2nd.  Day Transplant+67, post infusion.  Whereas once the goal was to become an out-patient at the village, now the goal is to get me completely ready to move home.  From pill taking to self care.  I’m not even close right now.  They call the diarrhea ‘Severe’.  I have a spreadsheet of the days here.

The Key: No more diarrhea.

Bowels: Angry, angry, angry.  Diarrhea day 50.  It doesn’t need saying but, this is getting really old.  Cramps are nasty.  Brutish.  At least I still have the The Shiny Candy-Like Button that delivers dilaudid/hydropmorphoned on demand.  Doesn’t solve anything but it saves me a much pain.

Outlook: The doctors are cautious and no dates are being offered for getting out of the hospital.  But they say ‘good’ most days.  Steroids at 50 mg twice a day.

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 84d kilos which is quite about what I am in good shape.

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.  I did not get a bike.  I must be monitored anytime I use a bike.  So I choose group therapy over bike most days.  I sit to shower and brush my teeth and save energy.

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 but are the source of other troubles like killing a lot of platelets.

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 listening 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.  I literally could use more hours in a day and I never watch television.  I do put on groovy screen savers on the PS3 or Ms. Melton’s superb disk of visuals and of course Planet Earth by the BBC.  Accept no substitutes.  My mythology: I’m on the extreme monk path, rattan sticks and all that.

Vistors: Mom and Dad most every day.  Judy once a week.  Drop an email if you’d like to visit.  The timing needs to be good.

Ok, I don’t know who’d read all that but it’s a full status.

10 Comments

Fire

by on Jul.09, 2012, under Uncategorized

Dad’s here with me in Socal and he has a  rumor of seven business in downtown Hanford burnt to the ground.  So sad if true!

1 Comment

Day Transplant+45

by on Jun.24, 2012, under The Days

5 Comments

Bottle Service

by on Jun.10, 2012, under Extrania

 
That’s right, brotha’s and sistah’s, I’m sitting here living La Vida Loca.

I have bottle service, anytime I ask, for Maalox+.   Wooooooo.

Livin’ the life of the phat and sassay octogenarian with bedside bottle service for Maalox.

Who’s the man?    RIGHT HERE!

 

7 Comments

Celebrate!

by on Jun.08, 2012, under The Days

 
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!

23 Comments

Picture, Mountains to the North

by on Jun.06, 2012, under Picture

Looking north.

2 Comments

Where are we, exactly?

by on Jun.05, 2012, under The Days

 
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.

3 Comments

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