We're home; we're exhausted.

We got the go ahead at 10 am (one more lab result tomorrow). I left to get the house ready. Gil's brother Bob arrived to bring the guy home after a little drama with the pharmacy and the insurance co. Tell me WHY do some folks think that insurance companies are more reliable than the federal government????)

Made it home; dogs are very happy!

White blood count stable at 2.5, hemoglobin up to 11.2. platelets up to 1500, neutrophils up to 1800. They said that now that the stem cells are working on all four that the rise will be slower.

Time to sleep in our own bed, together!

He's looking good!

He continues to excel at white blood cell growth, 2.6 today! Though he's a little down on the platelets and continues to have some GI issues, it looks good for leaving the hospital tomorrow!!

If all goes well after the doctors do their rounds in the mid morn, I'll head home with most of his belongings. Gil will stay at the hospital to do all the sign out rigamarole and be brought home by his brother Bob, mid afternoon. Bob is expecting to stay and keep the guy company for the next two weeks. What ever else happens, we'll laugh a lot!

I'm heading back early to make sure that the homestead is ready for his still slightly neutropenic self. When I was back the other night, I discovered our refrigerator was 62 degrees (though the fridge freezer was still OK). I emptied it and hope a good thawing and cleaning will produce cold when I turn it back on. If not, ARG!

Next post (hopefully) from the farm.

"Cookin' with gas"

Gil's numbers are kickin' butt!

Hemoglobin steady at 10.5

Platelets up to 18,000

White Blood Count (drum roll) 1.4 (yesterday .5)

Neutephils (another part of the immune system) 1000 (yesterday 250)

His new marrow is being incredibly productive! To put it in perspective, normal White Blood Count is 8-10, as I understand it. So he has a way to go, but is ahead of expectations!

Strength is also improving. We made a full loop of the 6th floor in addition to some physical therapy on stairs.

Food is still ho hum, but he's made it through some soup as well as some of the egg custard I made for him when I went back to the farm last night.

Lookin' GOOD!

Day T plus 11 and growing!

Gil's new bone marrow is producing new white blood cells! and neutrophils!! They both are part of the immune system and his are starting to kick it into gear! With the healing of his throat and intestinal track comes a good deal of sloughing off of cells, so the GI issues are still strong.

He's starting to lose his hair so he asked me to cut it all off (so as to avoid looking moth eaten or mangy) A teenage visitor yesterday had suggested a Mohawk as an interim look, so here you have it. I think I look way too jolly doing it!

A quick look at the numbers for those of you who are interested: After 2 bags of red blood cells, his hemoglobin is up to 10.5 After 2 bags of platelets, he's up to 9000 and (drum roll) his white blood count as of this morn was 0.5, half way to the magic "1.0" he needs for 2 days to be released.

To be released he needs, in addition to the WBC, to have consumed 1000 calories for two days, have walked daily.

Here's hoping for this Friday or Saturday!!

Not Yet

It's been a day.

No increase in white blood cells yet.

This morning and early aft, Gil was in a fog. It devolved into hallucinations where , he said, it was like watching a 35 mil camera film with one out of every 35 frames . . . odd.

He was looking at me and saw a flash of . . . his mother, or a tiger, or the head on a nickle (we since figured out it was G. Washington) etc.

It was funny but a little freaky.

It turns out that, though, that he may have had too much morphine and also been retaining it. So, they took him off his basal morphine but left him with his push button self dosing.

A few hours later, he's woken up and been able to laugh about it, even manage to watch a movie. The pain is manageable.

Progress!! Apple sauce is starting to have a bad after taste, but rice pudding is good! The next few weeks will be an adventure in taste!

We are hopeful that the white blood cells will start kicking it into gear tomorrow, and that we can still make it out of here by the end of the week.

The only way out is UP

This must be bottom.

Last night we had a little drama at bed time when he spiked a fever (expected) and needed to chest x rayed and blood cultured and hooked up to antibiotics etc. ( but starting at 10pm!?!?)

No pneumonia so far! though there have been fevers off and on all day.

Today was the lowest numbers, and the greatest likelihood of infection. He's pretty much always in a semi sleep state, except for a couple of hours this aft when (with 3 obsessive compulsive assistants) he completed a 300 piece jig saw puzzle!

Food = apple sauce. There was hope for tolerating rice pudding this eve but no luck so far!

We should start seeing a rise in his white blood cells tomorrow (made by his own new bone marrow!)

The only way out is UP!

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.

All quiet on the UW front

Gil felt fine today. At his doc's recommendation, we made an effort at exercise, walking around and around the halls culminating in a little Exercycle in the lounge. After a roaring game of Slip n Slide Sorry with a 4 year old he met in the lounge, we were given permission to go out on a pass. It felt good to get out and about even when we had to wait 45 minutes to get served in a burger joint. The bottom line is that he still has his immune system for another day or so, so make hay while the sun shines.

He also got moved to a new room. It's bigger and he was finally able to set up his computer so he can play games AND watch TV at the same time. The in room land line phone number is

608 267 8502. Room number is B6/644. Please call before visiting and sadly, plants or flowers aren't allowed. But he does love being loved, so feel free as the spirit moves you.

Tomorrow around 9:30, he'll get back his stem cells, and the transplant clock starts ticking, "T day zero". Stay tuned!

And so it all begins...

Here the guy is in his room awaiting his 15 minute shot of Melphalan. After it he will basically have no more blood making bone marrow. He'll coast on his existing blood cells 'til Friday when they'll give him back his stem cells which will start making new bone marrow. In the transplant lingo that's "T day zero" (today is T minus 2) His low point should be "T plus 4 or 5" and his counts should start coming up by "T plus 10"

I'll give more info as I understand it.

Today went well albeit slowly. We played cards (oh Hell) with our good friends Joe and Diana. And I won! Kinda amazing since I don't even know how to score! If you're interested in visiting, the next 2 or 3 days are probably best. Give a call on our cell and I can let you know if it's a good time. 608 807 6596. Obviously, if you have cold etc. it's not a good idea, otherwise, hand washing and Purell are just fine.

I already accidentally lost this post once editing it, so I'll call it enough for tonight. More tomorrow..

Cleared for take off

Gil went in for his final pre transplant check. Two long CT scans later, and a fair amount of blood and urine, and it looks good!

He starts Wednesday Aug 12th. He'll be given a pic line (a durable portal for all the fluids going in, so no need for multiple "sticks") and his chemo Melfalen.

He waits through Thursday and then on Friday gets his frozen and "washed" stem cells returned to him. By the weekend the chemo should start impacting his GI tract.

The next 10 days or so may be varying degrees of unpleasant to miserable. Hopefully 2 to 3 weeks in after he's able to eat and drink and walk (not simultaneously!) they'll consider letting him go home.

So there's the overview. I'll update the blog as the transplant unfolds. We're psyched; we're intimidated; but mostly we're ready to stop waiting and start what's next.

We've got enough!

Somewhat unexpectedly, Gil had more stem cells harvested on his second day than his first! We've got enough (barely) for two transplants. We'll be doing the final pre transplant testing and check in with his doc this Friday and, hopefully, start the actual transplant the week of August 10.

And so we're on track, schedule wise, to have Gil be at least 8 weeks post transplant before I need to leave for NYC to be first child care for our granddaughter . I'm afraid we're both besotted with Piper Rose, whom we spent the last 3+ days with in NYC. I hope to to include the latest pics of the young morsel in my next blog. We had a great time with Adam and Kate and David Leigh, enjoying dim sum twice and seeing Adam's office at WNYC.

We're heading home from NYC this evening and look forward to a few days rest before things really start.