Continuing on

A lot has happened the last month. The CMV infection was resolved, and then 2 weeks later reappeared, so I'm back on the anti-viral medicine. The rash on my face has grown to be a non-fungal "dandruff", which isn't pretty, but manageable. When I complained to SCCA, I was given a link that showed some pictures of some real graft vs. host disease rashes. Suddenly I'm not complaining so much.

Thankfully, the cancer blood test again came out "not detectable" which is very good. That means one less battle to fight, at least for the moment. The other 2 battles are GVHD and infection. Fortunately, the only infection has been the CMV reactivation, and there no sign of real GVHD. And I only have one more week of tapering off of the last anti-rejection drugs. This week I take only 250 mg once per day, instead of 1000 mg twice a day when I started.

I was finally able to take a vacation with the family, 2 nights at Mt. Rainier at the Longmire Lodge. We couldn't go tent camping as usual because I might have trouble with the fungal spores in the dirt. We left Thursday, just in time to be out of reach when they called me back for the anti-viral medicine on Friday. Fortunately, I got the messages when we got back in cell phone range, and picked up the medicine on Saturday and managed to get 2 doses in that day.

A note arrived from my donor, with just a little bit censored for privacy concerns. It seems it was the biology teacher that got the whole class signed up for the marrow donor program. I can't tell a lot about the donor, but he writes well, especially if English is not his first language. A lot of donors actually are from Europe. I'm definitely going to send him a note as I approach the 6 month mark.

Six months! Now that's a cause for celebration!

We're pleased that Gene has decided to play hockey after all. He definitely was not going to play on the team, but help out the goalies at a lower age level instead. We made him at least go to the second and last day of the tryouts to tell the team he wasn't playing, and said he didn't have to go on the ice, but the cheers from his team when he went in the locker room to tell them changed his mind. My hope is to actively work to prevent burn-out this year, something that was difficult to do while we were away on two different transplant procedures last year.

Right now I'm looking forward to spending more time with my family and friends. That has been the most enjoyable part of the summer, as short as it seems to have been.

Another milestone

I did not know Susan Butcher, the four-time Iditerod champion, but I read of her death, a year ago today, following a donor stem cell transplant. That affected me a good deal, thinking that if someone that strong couldn't make it, then how can I think I will? But she had a different cancer, and was affected by graft vs host disease. The main reality, though, was that one could survive from March until August, and still not make it through a donor stem cell transplant.

Susan's transplant was exactly a year before mine, minus a day, so that means I've now survived longer than she did. That's a good thing, but celebrating doesn't seem right. Again I drift to the same question I posed months ago, why her, and not me? I am naturally glad to get past this particular date.

Yesterday I was reacquainted with a term, sub-clinical, that may apply to the minor symptoms I'm having that the doctor refuses to call graft vs host disease. It seems to mean that they won't treat the symptoms. The spots on my face and neck aren't too bad, but I don't like them, especially the one where my glasses tend to rest. But if that's what it takes in order to kill the cancer, I'll take it. Fortuately, that's about as bad as it's been for me, so I won't complain too much.

Some of the recent highlights: a great afternoon with friends in White Rock B.C. during their festival, all 3 of us getting to use the NEXUS (express) lane through the border crossing with Canada, a movie, and visits with friends and family.

Not detectable!

There actually is time to worry, after all. When the doctor told me he might want to do a bone marrow test for myeloma if my blood counts continued to go down, I experienced some anticipatory anxiety, best relieved by thinking of something positive. My positive thought was being so glad that Gene is now 13 instead of 10.

Instead, though, we did a simple blood test for the protein that the myeloma puts out, and it came back "not detectable"! That made me happy enough not to need my lubricant eye drops (which help with the eye irritation that the magnesium saline IV can cause).

End of story? No, because we don't know why it's not detectable. We'd like it to be because the new immune system is attacking the myeloma, but as the doctor said, "Ask me again in a year." It might be gone because of the autologous transplant in November, combined with the conditioning for the donor transplant in March.

In addition, I still have a number of battles left to fight. For instance, the CMV has activated again, and I'm on antiviral medicine which is helping. I also have to continue tapering off of the anti-rejection drugs, and watch for graft vs host disease.

For these reasons, I've realized that I can't work full-time. I'm trying to even remember why I wanted to, but it probably was to try to get back to normal, and not have this still affecting me so much. At this point I'm just glad that the disability programs offered at my company are as good as they are.

Gone home

You can tell when someone goes home from a situation like this, no more updates! I've been wanting to write an update, but honestly, there's a lot of living out there to do. A 14 mile bicycle ride on a wonderful wooded trail, a 1000' gain hike in the Columbia River Gorge, walks to the Saturday farmers market downtown, and being with family and friends.

As I told the doctor today, I'm still concerned about getting GVHD (graft vs host disease), and about not getting it which might mean that I won't get the graft vs myeloma effect either. But I'm enjoying life so much that there's no time to worry about it.

Actually, what I was concerned was GVHD the last 2 days is more likely some minor skin infections due to my white cell counts being so low. That's a side effect of some of the medications I'm on. But as you imagined, there's a medicine for that, too!

Am I happy to be home? Absolutely, despite the unpacking, which isn't quite finished yet. I miss some of the people I grew fond of in Seattle, but not the kitchen flooring of the apartment. I was amazed to visit my buddy Chuck last week and find the same kitchen flooring! I didn't really want to see it again, but it was a good test of my mental stability. I think I passed.

Now it's just live and love and see what happens.

Nearly 100%

There seem to be several things I'm at nearly 100% recently.

One is in completing the 100 days! Two more days and we're going home, not any too soon, believe me!

Another, I just found out, is in my bone marrow and blood cells. There are several measurements where they compute the percentage. One is in bone marrow cells, and I'm at 98% donor. Another is red blood cells, and I'm at 90% donor, and for plasma cells in the blood, I'm at 100% donor. Amazing numbers.

I'm also just about 100% well, which is also amazing. The only thing slowing me down at all is my lung function, and even that has been stable, with the supplemental alpha-1 antitrypsin treatment I've been receiving.

But mostly I'm 100% glad to be going home to see family and friends again!

I learned about what type of blood I need if I ever need another transfusion. For the most part, I can now get type A, instead of O. The main thing to know, though, is to be sure they test my blood before any transfusion, to see what type I need. That's standard procedure, and they would never transfuse anyone without having tested their blood within 3 days.

I also learned that I've used up all my antibodies for type A, that's why it's safe to get a type A transfusion. Apparently, since I'm not creating any more antibodies for type A, the ones I had got old and expired. So, no part of my blood is attacking the rest of my blood anymore, it's all donor. I just have to watch for my blood attacking the rest of me, and hope that it attacks the myeloma.

All good news, and I can't wait to see all of you again!

Final days

Last weekend at home was wonderful. On Saturday, I took the bus to the Farmer's Market, met Gene there and had a root beer float with him, then took the bus back home. Then, Marilyn and I walked the 2 miles to the market along the waterfront. It's a lot of fun seeing people you know at the market.

Going home got a little complicated. My oncologist is on vacation the next 2 weeks, and the first appointment I could get was during the second week of July. I think that's with my new neighbor oncologist, who I saw at the market, too, as it happens. What I think is going to happen is that we'll get to move home on Thursday, but I may have to get my blood tests in Seattle, so I may have to drive down a couple times a week. Update! They found an appointment for me for this Friday, so I don't think I'll have to go to Seattle after all!

But let me tell you it was so great to get a card from Gene on Father's Day! It was a hand drawn card that said, "Keep fighting hard!" What more inspiration do you need than that?

Somewhat uncomfortable

I've now had 4 bone marrow aspiration procedures here in addition to the 4 I've had before. Yesterday I was delighted to have the same person that did the first one here. I asked about her the other times, and was told she only worked on Thursday, but there she was on a Friday! That was nice, but what's not so nice were the 2 skin biopsies she took from the same site. It's somewhat uncomfortable, so that's going to slow me down for a couple of days. The bone marrow aspiration doesn't bother me afterwards nearly as much. Let's hope for good test results.

This week was very busy, with an X-ray, medical photographs, and pulmonary function tests. I did well on the DLCO (diffuse lung capacity for carbon monoxide) test, and scored 3 percentage points higher than last time. No improvement was expected, really, even with the supplemental alpha-1 antitrypsin, so it's good news that it didn't go down. I asked them to test my alpha-1 antitrypsin level, and it was nearly normal, so apparently the change in blood genetics did not change this. The near normal level is probably due to the supplementation, instead.

The main challenge now is to try to offset the magnesium depletion that some of the anti-rejection drugs cause, without resorting to IV supplementation. I'm trying some new tablets, because I think I have to be able to regulate this before I leave. The CMV count finally went back down to zero, and since this is a very sensitive DNA test, I was able to immediately stop the anti-viral drugs.

Target date for going home: June 20th