At home

The new schedule is to begin the transplant process the week of March 12th, so we get to spend this week and most of next at home. There are several fortunate things, that I had 3 matched donors to begin with, and I'm well enough that delaying a couple of weeks should not affect the final outcome negatively. That, and lots of good friends and family. That includes our hockey family, where several families have helped get Gene to practice and games. Thank you!

As you expected, I did quite a bit of research on alpha-1 antitrypsin deficiency, and I found out my genetic test results, which said I have both of the defective genes, the worst case. But, there are treatments out there that will help, and I start one of them next week, one called Prolastin. It's a product created from blood donations. I never knew how much I would be dependent on blood donations when I was donating blood. I bet they had a hard time trying to make Prolastin out of my donations, though, since I have so little alpha-1 antitrypsin.

On a sad note, a very good family friend died last week from cancer. I don't know why her and not me, I only know to do my best to make the world better, and celebrate life. I'm sure you know what I mean.

Change of donor

First, I appreciate all the great comments. If it wasn't clear, comments are welcome! They are a nice addition to a day full of pokes and prods and scans. But mostly I'm past all the testing and today was just a great sunny day in Seattle, and we took a memorial walk in Lincoln Park, in West Seattle. The "memorial" part was in tracing our steps of 2 years ago when I was so low on red blood cells (after my first transplant) that I just about collapsed trying to climb back up the hill, but this time it was a breeze.

Today we learned that my donor did not pass the physical exam, and is ineligible to donate. We knew this was a possibility, and fortunately, I had 3 very good matches from the start, so the process has started to check on the second donor. These things happen, and it will delay the start of the procedure to perhaps the middle of March, but again, I can't be anything but thankful to these donors willing to inconvenience themselves like this.

So, as soon as my work computer is fixed, we will move back home for maybe a couple of weeks, and wait for a new schedule.

The most interesting technical news is that I seem to have an alpha-1 antitrypsin deficiency which has caused some lung damage, as if I had been a smoker. Alpha-1 antitrypsin is a protein, and I don't have enough of it, apparently, to prevent the trypsin from causing damage. Genotype tests are being done to determine for sure if I have the genetic condition. Right after this I'll be off doing some web searches for more information, you can be sure.

Some of the highlights of this last week: Gene visiting for the weekend, the movie "Howl's Moving Castle" by Miyazaki, and a wonderful Mardi Gras dinner with some delightful friends.

Schedule change

Over many years I donated over 4 gallons of blood, stopping when the first hints of an immune problem appeared. Donating just seemed like a good thing to do, and I never expected to need any blood transfusions myself. But I have needed 6 units so far, and might need more, possibly during this transplant procedure. Now, I need stem cells from a donor. Of course I'm very thankful for the many people who have registered with the National Marrow Donor Program, since that's where my donor match was found.

What we learned just yesterday is that the donor needs to delay collection of the stem cells for a couple of days. There seems to be no problem in actually donating, just a scheduling problem. So, the date of the transplant has changed, and will not be as scheduled after all. The only negative is that it will delay my return home, but I'm very thankful to this particular donor. I hope to learn more about the schedule change today.

The good news was that I am in very good shape overall, especially after having been through 2 autologous stem cell procedures (using my own stem cells). The doctors told us yesterday that their tests show that my heart and kidneys are just fine, and best of all, the cancer is virtually undetectable, which is important for this allogeneic stem cell transplant (using a donor) to work. There may be some inflammation in my lungs, but not enough to call off the transplant.

Tomorrow I am scheduled for placement of a central line, called a Hickman catheter, by Dr. Robert Hickman himself! This catheter goes into a vein near the heart and is used for quick and easy access to blood for tests, and to administer fluids or antibiotics should I need them. The stem cells go in through that catheter, as well. The dangling lines are kind of a pain, but I've managed before.

Why am I having a transplant? That's because I have multiple myeloma, a cancer of the blood, specifically a certain plasma cell that proliferates, causing lots of problems. It can't be cut out, unfortunately, but at least it doesn't usually spread, although it can. One of the best treatments for myeloma so far is a stem cell transplant. That has worked well for me both times, using my own stem cells. Unfortunately, though, the cancer came back sooner than we hoped. We knew it would be back, but I actually hoped that it would be after a better treatment was developed. I am in remission now, from the last autologous transplant, but a donor transplant has the additional potential benefit of setting up an immune system response to attack the cancer on-going. Rather than have a remission of 1 year or less and go back on chemotherapy again, we are hoping for something close to a cure. No guarantees, of course.

Thanks to everyone for their thoughts and well wishes.