Saturday, April 28, 2007

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.

Wednesday, April 25, 2007

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.

Wednesday, April 18, 2007

Good friends

Last week my friend Chuck came to stay with me, which was very much appreciated. It's a good friend that will stay with you when you are sick. That worked out really well, so that Marilyn and Gene could go on spring break.

This spring break brought back memories of last year's, where I was delayed because I was starting a new chemotherapy after learning that I had relapsed. I'm glad they got to go, but I'll be there next year!

I haven't seen all the results of my bone marrow biopsy last week, but one thing stands out and I'm trying to adjust to it. It said that my bone marrow cells are 94% donor, which is amazing to me. I thought it would be more gradual, and I haven't had a chance to ask for a clarification of that test result. I was told the cancer in the marrow was less than "minimal residual disease", the result I got in Februrary, which is great.

Lastly, I think of my young donor, possibly on campus somewhere, and hope he's safe. I don't know when the madness will end, but we have to keep trying.

Wednesday, April 11, 2007

Graft vs. Host

You may be wondering why I have to be here in Seattle for the first 100 days. It's not that the recovery from the chemotherapy and radiation takes that long, but to watch and deal with graft vs. host disease (GVHD). After 100 days it's expected that the worst is over.

GVHD isn't all bad, because I do want the donor's immune system (graft) to fight the cancer in me (host). It's truly a balancing act, to suppress GVHD, but not so much that the new immune system doesn't fight the cancer.

From the beginning, I have been on medication to prevent GVHD, and the balance comes this week when they test my bone marrow for how much cancer is in it. If I have too much cancer, then they'll probably reduce the medication to try to get the new immune system to attack it.

The bad side of GVHD is what it can do to things like the skin, and liver. But hopefully, any symptoms will be manageable.

Now, it's time for the Stanley Cup Playoffs! Go Vancouver!

Wednesday, April 4, 2007


We learned a fascinating bit of information last week. My blood type will be changing from my own original type, O+, to my donor's type. Also, my blood DNA will be different than the rest of my body, and yes, it's already been the basis of a CSI story, I'm told.

Yes, things have been a little boring here, just as the nurse says they want, because it means I'm not having problems. The doctors are trying to find something wrong with me, but no luck so far. In fact, the nurse said everyone is quite pleased that my platelet count bounced right back without ever going into danger mode, saying that I was their poster child for that issue. Fine with me!

I have to put in an extra "Thanks!" here, to Gene for working hard on his book report today! That's a very smart kid there!

Highlights of the last week: A walk to the Olympic Sculpture Park which is quite expansive and well done, a walk to the Azteca restaurant nearby which has always been a favorite, and that famous warm Springtime in Seattle weather.