Life on Earth

I have a new cellie, and he is a fellow BMTer from Stanford. Our blogs were passing in the night at Stanford, and now I’ve finally met Curt in the worst of circumstances. Life is so strange!

I had a pretty good night’s sleep, after taking 10mg of Ambien at 9pm. Was awakened a few times, for a writing sample and dose of cytarabine at 2am, and vitals at least once. Ambien helps make it unclear. When I woke up at 7 am I felt like I’d been on a bender, big headache, and the inside of my mouth announced that I’d had cytarabine and methotrexate. The raging mucositis is back. I ate my egg and cheese biscuit very gingerly, and left everything else but the juice. Doc came to see me and ordered up some steroid wash for my mouth, and another wash, and my mouth was back to normal in no time.

It’s 2:30pm right now, and I just started the third of the four cytarabine doses, with the last coming tomorrow at 2 am. That will finish at 4 am, then a dose of neupogen to bolster my blood, then I go home. I can expect to hit nadir, the low point, the pits, on Tuesday. My blood counts will drop to the floor, and I will be anemic and neutropenic, back on the mask outside the house. I can expect to slowly recover, and then come right back to this spot for the same treatment in 2-3 weeks.

Somehow in my enfeebled mind I had this idea that I would come in here, get the slam, and then either be miraculously cured or dead. But, we must play out every little battle, all the soldiers get a chance to fire off their guns, circle the wagons, batten down the hatches, fix bayonets, right wheel and charge! Nothing is simple. So fine, I am adjusting my thinking to the longer term.

Watching my old cellie and watching his rookie moves, I realize how prepared I really am for this bizarre environment, even though I made a few mistakes. I am prepared with my bag of stuff, things like an extension cord. The one thing I am trying to get used to is sharing a room, trying to tune out what is going on next door, focusing on my own stuff.

They have these nice TVs for each room that swing out on a boom, individual for each bed, and you plug your headphones in and enter your own world. However, the engineers that designed the system made the boom so short that if you sit up in bed and swing the TV in front of you, it is 6” from your face. You end up swinging it to the side, and turning your neck to watch TV. I had a stiff neck after the Celtics game last night. Why don’t they consult me before they do this stuff?

Hey Manitouboo, I think the drug that caused the nerve damage is vincristine, and I have very minor neuropathy from that, just enough that I am a klutz and blame the dropping of things on the vincristine. It may be that cytarabine does this also, but I don’t recall that. The writing samples are because the cytarabine can effect fine motor control by impacting the brain. And here are the pants; I wore superheroes yesterday.

Thankfully I do not see a white hat, or any other stool collector, unless Dana is here. She has been trying to find the right stools for the kitchen for years, so there are a few in the garage. And on a really positive note regarding stools, I was finally able to find a quiet moment here in the Valentine suite this morning and came out with a nice melodic Nat Adderley tune.

Roger R. came by to visit yesterday, man he looks good, doing triathlons and working out and staying in great shape. It was great to see him, and then my brother from another mother Barry came by, and today Drew W. visited, and then sister from another mother Stacy, and Dana came by for lunch, so lots of action.

Thanks for those strong sentiments, Anonymous, I just read them as I was finishing this up. I know there are silent supporters out there, members of my karass like Bill and you, and I feel all your hands lifting me up. Sometimes I see my spirit as the beautiful wooden canoe in ‘Deliverance,’ watching that canoe going down the river and knowing that it cannot make it through the rapids, that it will snap in half when it goes over the falls. Other times I am the uglier but more hardy aluminum canoe, dinged to hell, heavy, clumsier, but able to last. I have the 16’ version of that canoe, the OTCA. I think it was an OTCA 18 in the movie. The OTCA now sells for $7,800 from Old Town.

I chose for the sentence I had to write before cytarabine –
‘Hope is the thing with feathers,
that perches in the soul,
and knows the tune without the words,’
which is a misquote by me of Emily Dickinson’s poem ‘Hope.’ It should be ‘sings’ not ‘knows.’ I just hope it is not an omen that I screwed up ‘Hope.’ Yikes.

I will go back to Wavertree tomorrow, needing the loving and tender care of Dana as I sink into darkness. Since I slept well, I do not have a good bleak poem or thought to share with you. Life goes on, oh-bla-di.

Hey, update, I am back at Wavertree, just got here, good to be here. I am going to head for the couch and watch season 2 of 'Breaking Bad.' Guess what I am pondering?