Chain reaction

First you have chemo to condition your body to accept the donor's stem cells, and drugs to suppress the immune system so as not to reject the transplant, and thus the CMV reactivates itself (see my prior post Learning more), as viruses are apt to do in these situations. This happened to me before with the chicken pox virus. Then you take another drug to counter the CMV, which lowers the white blood cell count to almost nothing. Naturally, then you give yourself injections of another drug to boost the white blood cell count. It's quite a chain reaction. There's a lot of opportunity for medical research to find drugs with fewer side effects.

I've discovered another effect of the transplant. I have been curious about the change of the genetics of my blood. Many years ago I read an article about genetics controlling whether one's urine has a distinctive odor after eating asparagus. Well, apparently it is the blood's genetics that control this, because after the transplant, I no longer have that odor. That's because I apparently no longer produce an enzyme that can break down a chemical found in asparagus. Now, I wonder how many other things will be different?

Last weekend was the best I've had for a long time. We got to go home on Friday, I got to spend a lot of time with Gene, and I got to watch my buddy Chuck race his Camero and win! I wasn't even upset to come back to Seattle early, because it's almost over! This week the doctor said they would start on a discharge plan for me! It's going to be a fine Summer!

Hard to believe

Sometimes it's good news that is hard to believe. This week the doctor said that most myeloma patients do well after this transplant procedure, mentioning someone that is 8 years out. I don't know how to hold onto that hope without crushing it. Just one day at a time, I guess.

But the tests are good. I got clarification on the 0.02 number from the bone marrow test, and that is the percentage of abnormal cells in the bone marrow. Considering I started out at diagnosis at 80%, that's very good. I have another bone marrow test in 2 weeks, so we'll see.

I sure hope I get to see the school play that Gene is going to be in. He does so well at animating the characters, really playing the part, not just speaking the lines. The other thing he's good at is doing his school work, when he decides to do it. Just deciding to do it is the hardest part. Keep up the good work, Gene!

I hope your holiday weekend is lining up as well as mine! An anniversary, a few nights at home, and meeting friends at the race track. Life is good!

New test results

Last week was day 56, time for another bone marrow aspiration. There was nothing alarming in the results, still a tiny bit of cancer, but it looks to me like the report says that there is less than 4 weeks ago. All good news, so far. My weight is pretty stable now, and we're working on taking me off the IV fluids, which will be very nice.

Saturday we took a long walk to Fremont, to Costas Opa Greek Restaurant, which was real good. My feet were a little tired by the time we got back, but the butterscotch milkshake helped a lot!

Sunday was a wonderful Mother's Day at the Skate Barn in Renton, I mean, it was really great to see Gene for the day. Marilyn went to Ikea while I waited at the Skate Barn. Gene asked when Marilyn was going to get back, and I said, "When she runs out of money." I guess we all got a little bit of what we wanted, that day.

Learning more

Sometimes in this life I've had to learn more than I wanted to. Like multiple myeloma, for instance. I just learned that my cousin has had to learn about another rare disease, called PMP. There's not much more to do than to learn what you can, and carry on.

This week I'm learning about CMV, or cytomegalovirus. It's a very common virus, between 50 and 80% of adults have been infected by it. Most infections are "silent", but it can be serious for a transplant patient. Because of the anti-rejection drugs I'm taking, this virus has decided to take off in me, which the doctors have been watching for, so now I'm on an anti-viral medication to keep it under control.

The best news this week is that I was given clearance to go home for weekends! It might depend, though, on whether I need to be monitored for this virus over the weekend, but still good news.

Highlight this week was a long walk to Pike Place Market for dinner, and then to Safeco Field to watch Oregon State vs. U of W. It was our first time to Safeco Field, and it's very nice, but we should have dressed warmer.

Half-way celebration

This week I'm celebrating reaching the half-way point! Fifty days out of 100. I can't wait. I might even sneak home on a day-trip this weekend.

The bean counters are at it again, wouldn't you know. There was an article about this in the paper, which reported that my employer let about 1300 people go on Tuesday. If you know why the computer in "2001" was called HAL, then you know what company that is. The rumor is that our whole division is up for sale. But so far, I'm still employed. I've been through far too many of these things already, to tell the truth.

I'm trying to come up with a "bright side", but when 4 people in your immediate group are let go, and another bails out for another job on his own, you know that staying isn't going to be much fun, either. But, we'll make the best of it.

I still have virtually no symptoms of graft vs. host disease. The small rash I have the doctors don't consider GVHD, which makes me glad I don't have a rash they do consider GVHD. The only thing left is to stay healthy, and wait to see if I get the graft vs. myeloma effect, which would be a good thing.

Second honeymoon

This is not really a second honeymoon, but where there isn't the quality time together that Marilyn and I would want, there certainly is the quantity, and some quality inherent in just that. There surely is a lot of time to focus on things that we want to. Strolls along Lake Union, though, are not the same as along Lake Quinault! Even in the rain!

So what to focus on? One obvious thing is appreciation, again. You can't do this transplant on your own, they won't even let you, and this amount of care is not like running an errand. It completely alters your life, at least temporarily. I'm so thankful for her care that I can pretty much keep in mind that she cares about me, which is awesome in itself.

What else? Call me slow as a rain forest banana slug, but the other thing to focus on is my feelings for Marilyn. I feel as if I've thrown off all these layers of rather damp moss to rediscover that it's really not hard to respond when someone lets you know she cares about you. And that creates such a great feeling that I don't want to forget that again.

And yet we're both so independent! Marilyn had a great career and was excellent in instructional design. I know, I experienced some of her work before I knew her. Her classes make sense, cover what they're supposed to, and make you learn the material, painlessly. And along with my career, I'm sure I would have worked with children, I was already doing that, being a foster parent to 2 teen-aged boys at the time we met. But I wouldn't have met Gene without Marilyn's help, so I also appreciate her very much for that opportunity.

That's the hardest thing, not being there for Gene. It was nice that Marilyn was able to visit Bellingham one day this week and spend some time with him. Every time I held that "happy baby", which was as much as I could, I felt so fulfilled that nothing else much mattered. But on the positive side, he is learning things, such as being independent, and that he is so loved, even from afar.

An unexpected loss

That is what was troubling me last week, but I didn't yet know it. I have lost yet another body part, my own bone marrow. At least this time I had the choice, which I didn't have when that sexually abusive infant-male surgery was inflicted on me, nor when my tonsils and adenoids were cut out. Both cases were misguided attempts at better "health" which fortunately most doctors are beginning to eschew.

And this time the part was truly diseased, not perfectly healthy as my foreskin was, or just temporarily infected due to second-hand smoke as my tonsils might have been. But a loss of a body part is not uncommon, and if you've lost one, I hope it was truly important for your well being and that you had complete information available. As much as I knew about this donor transplant process, I wish I had realized this aspect of it.

I learned this week that high numbers are good, in terms of the percentage of donor cells in the bone marrow. Some day, we will be able to target just the bad cells in the bone marrow, instead of all of it, but for now, this is the best treatment available. It is a bit of a sledge hammer approach, though, and has other risks.

Highlight this week was walking up the hill to the Harvard Exit Theatre to see the highly recommended movie "The Lives of Others", followed by an early dinner at the Deluxe. If you see the movie, you might be like me, still wondering half-way through "why do I want to see this", but then it grabs you. When we were walking home, I had the feeling that I had escaped, for at least a few hours, which was good.