August 28, 2001: What's Next?

Vol. 11.1

Dear friends: as promised, just back from the doctors at the University of Pennsylvania and here's the protocol for the fall for me.

First, they're pleased with how I've responded to the protocol thus far and feel like I'm right on track with their expectations. This is, of course, very good news. Because of this, they want to go forward right away with the process for stem cell transplant. Here's how that will work.

On Monday, Sept 17 I'll check into the hospital for 3 days. At that point they'll give me a chemotherapy called Cytoxan for a day, as well as a bunch of other drugs designed to protect my immune system and specifically, my kidney/bladder. During those days I'll also receive some instruction on how to give myself needles as I'll be beginning a regular (several week) protocol of a daily, injected drug called Neupogen.

When I get out I'll have about 10 days at home to let the drugs go to work--their job is to boost the production of stem cells and white blood cells in my system. Apparently this period isn't too bad--just some odd discomfort in the bones as the cells grow at an abnormal rate (they say it feels like anywhere between mild discomfort and a heart attack) and possibly some nausea and fatigue. During this time I'll also have twice-weekly blood tests to monitor my counts.

Then, on October 01 I'll go back to the hospital as an out-patient. The first day they'll insert a "Pheresis catheter" in my neck and then begin the process of harvesting the stem cells from my blood. Basically, the harvesting is much like dialysis--they take the blood out, run it through a machine that extracts the stem cells, then put it back in. I will do this for anywhere between 2-5 days, or until they get what they need. (FYI: these are adult stem cells, not the kind Bush and others are in a knot about.) During this time I'll be commuting back and forth to the hospital in downtown Philly.(Apologies to the philly natives, but explaining the distinction between university city and center city to non-Philadelphians in just plain silly.) Anyway, during that period I should be in decent shape, with the main side-effects being odd tingling and general fatigue.

The final phase should start, all things being equal, on Oct 8 (Canadian Thanksgiving), when I am readmitted to the hospital for a short, 3 or at the most 4 day stay where the stem cells will be "reinfused" into my system. Here's how that works: First, I'll get a bunch of IV fluids for hydration, followed the next day by a very high dose of a chemotherapy called Melphalan. This is the big one, and will cause all sorts of problems in the weeks following. However, this therapy also will kill the remaining myeloma cells in my system and will allow me to be "open" to receiving the new stem cells that will eventually grow better, more healthy bone marrow and blood. The day after the chemo I'll receive the stem cell transplant, and then will be discharged that afternoon or the following morning, depending upon my reaction to the chemo (i.e.: will I be puking my guts out?).

Once home, I'll have daily visits from a home health care nurse who will administer IV fluids and anti-nausea meds for about a week. During this time and following for about 100 days I'll continue to receive my Neupogen shots and go to for blood test twice a week to make sure my counts are fine and to be sure that I'm staying on track.

This will also be the time when I'm most susceptible to side-effects and other stuff. Here's the run-down on that stuff. First, there's the big internal stuff: the chemo makes your heart, lungs and kidneys susceptible to all sorts of funky problems (I've already had a bunch of tests to make sure they're in decent order already). Second, there's the more mundane, but potentially dangerous stuff like mouth and esophagus sores which can make it impossible to swallow--thus necessitating hospitalization. Finally, there's the general immune deficiency that comes from having the stuffing kicked out of your blood/bone marrow by the cancer: about one in three patients end up in the hospital during the 60 days immediately following the transplant with some kind of infection.

The doctors tell me that it will be about 6-8 weeks before I start to feel myself after the transplant--I'll have about that long of gradual rebuilding of strength and stamina.

So, that's what I have to look forward to.

It's all a little daunting right now, especially since the last few weeks have been so good--I've tricked myself into thinking I'm ok, and now I'm suddenly looking down the barrel of a nasty, long process. It's a bit odd, a little scary, and mostly just unknown--not unlike what I felt 5 months ago when I started the VAD chemo regime.... which i guess means I'll survive, even if parts of it are quite difficult.

This is, of course, where you come in. Someone asked me lately if I felt like prayer had made a difference in my situation, and I felt quite overcome as I said an absolute, unequivocal yes. It's been a constant from the first day I told a soul about it--I can say, without ambivalence, that I've not once felt alone in this process, even at my bleakest, most tired period in mid-June. Of course I in no way understand it, nor do I gain any kind of triumphalistic notion from it--I can only say this: that while I've been frightened, worried, exhausted, anxious and full of trepidation, I've never once felt abandoned, and I've continually felt cared for, comforted and, most exceptionally, at peace.

Because of this, I ask you to continue to pray for me, and as well for those who have no support group or family. May they become part of our life like breath.

Thanks....

Dwight

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