Day -1 07:00. They Said This Could Be Easy

Good news last night: Combination of dexamethasone, ondansetron, and aprepitant (had to look that last one up) worked perfectly to prevent any nausea at all.

Bad news: That was 12mg of dexamethasone, and even though it made me less jumpy than did my traditional doses I appreciated getting swacked by some lorazepam. The dex morning-after effect seems minimal.

So the worst parts were operating the flaky cable TV box and keeping my mouth full of crushed ice for a couple of hours during the melphalan infusion. The ice has actually been demonstrated to greatly reduce the later incidence of mouth ulcers, presumably by reducing mucosal delivery of the drug. I was a good boy and so got a little chilled. I’m assured the return on investment is huge.

My night nurse was a Xavier alumna only a few years ahead of Katrina. We got to talking about teachers and I inevitably brought up Mrs. Rickle and wound up showing her Merry’s YouTube of White Rabbit.

Again, they’re not going to wait for my blood counts to completely crash but will instead give me back stem cells tomorrow. Thus the nadir on the counts and the peak of misery, which should begin early next week, may only last a very few days if I get good engraftment. Today is likely to be very uneventful, and the rest of the week pretty much the same.

Day -2. This Is It

“The deep breath before the plunge.” There was a time at the beginning of WWII known in Britain as the Phony War and in Germany as the Sitzkreig. My stem cell collection went so well last week that we had several days of freedom to make sure everything is prepared, then sit and contemplate what’s coming.

Today we wait for the Mayo hospital to tell us there is a bed ready, at which point I go in for paperwork, processing, and getting settled. Then I have some hours of hydration and loading with antiemetics in preparation for a single fatal dose of melphalan tonight. They won’t wait for full effects of the poison but rather have scheduled rescue infusion of half my stem cell collection (that half is nearly twice what is usually needed for engraftment) on Wednesday. That will be Day Zero of my new life. The other half of the collected cells will stay in the freezer, perhaps to be used for yet another rebirth some years down the road.

Yes I am afraid. Yes I have made the right choices. Like going to Caltech, this will be a good thing to have done. And the odds are considerably more in my favor than they were then. And if things don’t go perfectly it certainly won’t be for lack of loving support. I thank you again for all the prayers and good wishes.

Sitting In The Pheresis Room

My counts were good enough to start collecting today. That means that so far about every single thing has gone a little better than expected (and a lot better than feared). Though I’ll be spending hours here over the next few days I’ll probably not have anything new to report so if I don’t post any more just assume things continue to go well.

Sitting In The Recovery Room

They want two hours to be sure I don’t bleed or keel over for some other reason. Nancy already brought me some chocolate milk from the cafeteria to break my fast. All is well. The catheter went in IJ so I didn’t need as much sedation as I’d feared; I believe I was largely conscious the whole time though definitely relaxed. No problem that I forgot to bring my OSA jaw support appliance.

And now the local is starting to wear off where the tunnel crossed the clavicle. Ah, well. I just may enjoy some narcotic come bedtime.

You guys wanted updates, you’re getting updates. I believe I can restrain myself from describing each bowel event when they become the center of my life next week.

Move Along, Nothing To See Here..

Today I get my second dose of Neupogen. They say I’ve a 20% chance of unpleasant side effects when it really kicks in with later doses but for now all is well.

Tomorrow I get my central venous catheter. It has two honking big lumens for pheresis so I’ll probably get some sedation. If I don’t remember the procedure it couldn’t have been too bad, right?

Thank you for all the warm thoughts and prayers.

Here We Go

Image

I’ve adopted the ultimate low-maintenance haircut in anticipation of it all falling out in a couple of weeks; Nancy got hers cut in sympathy.

Oh, and if, by the way, any of you were thinking of sending me flowers, please don’t. Even though Nancy might appreciate them I’m forbidden to come anywhere near them for some time.

To begin..

Thank you everyone for your interest in my health. When there’s doubt, assume I’m fine. Maybe too busy to post an update, though.

Current plan at the Scottsdale Mayo is for start of Neupogen on 2/18, port on 2/20, and pheresis collection of stem cells that week followed by admission for melphalan on 2/27 (designated Day -2) and rescue reinfusion of stem cells 2/29 (Day 0). Typically patients are discharged around Day 15 with gradual return to full strength by Day 100. The statistics for success in this program are remarkable though of course anything is possible. Nancy or I will try to provide updates as things unfold.

Love,
Tim