Dream Passage

I've been asked for "more pictures, less numbers and tell us what it's like" for us now.

So

It feels a little like this picture, a long passage with a slight dream like quality to it. Gil's pretty much completely raw from his mouth all the way through his system. The pain is always there and makes it impossible to eat much. He's on continuous morphine and self administered doses. Plus alot of other meds for nausea.

His default state is asleep. He can be roused for vitals and brief visits and of course, the bathroom. This picture was the one time today when he was told he needed to get up and walk. We made it down to the lounge where he tromped me in Cribbage, even though he fell asleep each time it was my turn to lay down cards!

I'm in an altered state too. Time has slowed way down. I try to make it to the hospital before 7am so I can touch base with the night nurse. I help the guy get dressed, though some time it doesn't get finished til late morning. You know, I'm not exactly sure what the heck we do. !? Some how the day slogs on with some jigsaw, some games, some TV or DVDs but as of now he is, at best, 10% present. I stay til he goes to bed (last night that was early!) usually 10.

I think about getting to the other side of this where we can go where or do what we want without thought about meds or doc appts. Watching Gil in his primal state, does make me feel how connected I am to him. Kinda sweet remembering him over the years and imagining this next phase. The farm seems like a previous lifetime, though when I've gone back every 3rd or 4th night, it feels like home. I'm grateful for the young folks taking care of the farm flora and fauna.

For both of us, this feels like an uncomfortable dream with occasional swirls of hope.

(and his white blood count is under 0.1) (look for it to start rising by this Monday!)

Hitting the wall

We're hitting the "nadir" of the transplant process. Gil's white blood count is 0.1 today and his throat and esophagus and gut are pretty raw. They've put him on a morphine drip where he can give himself a dose whenever he needs it. The morphine on top of the other meds he's on for nausea make him pretty out of it.

He's spent the day mostly in a doze, with a little work on the third jig saw puzzle of his stay. Food is getting pretty difficult, so I went to Babcock Hall and got him some orange custard chocolate chip ice cream. Even that wasn't easy to eat! I'm going out to get rice pudding next.

A fever may be flirting with him. His doc is going on vacation for a week. At her final visit this eve, she said she wanted to start him on antibiotics since at this point with no immune system, infections can take over like wild fire. We both feel very trusting in the medical care he's getting!

"T" plus 6: Storm Warnings

Gil's symptoms are building up pressure. The mouth sores moving through his GI tract whip up sudden squalls of nausea and diarrhea. The meds they give him quiet his body but leave him in a stupor. Unfortunately, restless leg syndrome is rearing it's ugly head. I'd think with all the meds he's on, it'd leave him be. But the neuropathy interacts with it and, not being able to use our Migun massage table, there's not much else we can do.

His white blood count is down to .2. It should hit zero soon. We'll be watching closely for infection and acting quickly. This is the "sailing 'round the Horn" phase of the transplant. We must be vigilant.

By next week his new bone marrow should be producing new white and red blood cells. Meanwhile, we're in an altered state.

"T" day plus 5

Time plods on.

He has the beginning of mouth sores and the runs but is basically OK. They've started to track his white blood count which has fallen to .7. It should hit zero in the next few days and then start to rise. To that end they're starting to give him the same Nupogen shots I gave him before his harvest to stimulate the new growth.

Despite all the "toys" he brought with him to the hospital, we're both getting a little stir crazy. We've been here a week; (though it feels like more!); one more (or so) to go.

At the support group yesterday, I heard more transplant stories and realized how wildly different every one's reactions are. What most people have in common, though, is significant time post transplant chemo free. It'll be worth it.

So far, so good

"T" plus 3 and he's got some diarrhea and fatigue but much less than is normal for this stage. Is it the Miller luck? Will it last?? Who knows? But we're grateful (and perhaps a little bored). It's still early in the process.

What we expect: Gil's white blood cells should drop to zero in the next few days. He may get infections which will be treated with antibiotics. By day "T" plus 10 his white blood count should be rising but he may need transfusion of red blood cells.

There is no such thing as "normal". There is just your experience.

"T" day plus 2

Here he is, watching Tiger Woods and playing solitaire!

Yesterday was uneventful. I went back to the farm last night and this morn to pick and freeze vegis. I brought back a sampling of vegis for Dr Callander (who had expressed interest in "the tyranny of beans" needing to be picked every two days), as well as many ripe melons for the nurses. It's not clear if Gil will be allowed any peeled and then cut up melon, because it appears he is starting gastro intestinal side effects.

We know that this particular "dark night" is necessary to cross through before he's released, but the stories have been a little intimidating. The doc said that perhaps his having had chemo and radiation before might mean his system would be thrown for less of a loop. Time will tell.

He's been feeling tired today which makes me hope that sleep might be one of his side effects. Wouldn't that be nice!! Friday night he'd had a bad restless leg attack which had cut his sleep down to under 4 hours. It seems only fair that he get a little sleep aid with everything else.

We're both going to bed a little earlier tonight.

T day plus 0 and food still tastes good!

Gil got his stem cells back this morning with fanfare and a t shirt from the transplant team which has "we're marrow minded" on the back. He plans to get the staff to sign it. He's been playing some of his favorite music on his ipod speaker system (thanks for the loan from Adam/Kate) and has promised copies of the ones different staff members like.

My brother Ed says Gil will rot in his own private copyright infringement hell someday!

I went out to the Apple store "genius bar" today, to get Gil's computer outfitted with a device that will allow him to access the hospital's WIFI to play on line poker and cribbage. Success!

And food still tastes good to the guy; Shrimp Scampi for lunch and Barbecue Ribs for dinner.

Perhaps the momentum of his ability to enjoy will carry him further into this next week than all the horror stories have led us to expect.

"T"ransplant day plus zero. Stay tuned.