Sunday, September 2, 2007

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.

Sunday, August 5, 2007

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.

Sunday, July 29, 2007

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.

Tuesday, July 10, 2007

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.

Tuesday, June 19, 2007

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!

Monday, June 18, 2007

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?

Saturday, June 9, 2007

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

Saturday, June 2, 2007

Attachments and bonding

While waiting for a job to open up in the Seattle area in 1976, I had a fear of getting too attached to my accidental home in Los Angeles. Moving to where the jobs were had been traumatic enough, and I did not want to get "stuck" there. I just wanted out of L.A., so I took a job in Dallas for a year. It's a funny thing when you leave a place you're "not attached" to, all of a sudden all the good things about it and the good people you knew come to mind.

So it's going to be when I leave here. I've observed bonding going on between patients and staff here, but I guess I thought I was immune, because I didn't want to be here. Well, I was hoping to talk the main team nurse into coming home with us, but as Marilyn says, she loves her job too much. And I still maintain that you can't help falling in love with the first nurse to give you a chemo infusion. Imagine, sitting there like a sick puppy, with "please save me" in your wide eyes. Thus I'm finding myself not as immune as I thought.

But it's OK. The best thing to do is to just relax and enjoy all the good feelings you can. It just means you're alive.

Thursday, May 31, 2007

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!

Wednesday, May 23, 2007

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!

Wednesday, May 16, 2007

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.

Wednesday, May 9, 2007

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.

Thursday, May 3, 2007

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.

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.

Wednesday, March 28, 2007

Best ever

I had a phrase I said a lot when our son Gene was a baby, "best baby ever." In remembering that, I thought when I came to Seattle that I would try to be the "best patient ever." Positive messages are good, although not a panacea, or else I wouldn't have gotten cancer to begin with, since my motto was always, "I don't get sick."

So it was without too much surprise to find out this week some evidence of how well I am doing. My red and white blood cell counts have started going back up! There's also evidence that my other major organs are doing fine, too. That means I'm recovering from the chemotherapy and radiation, in what the doctors say is in better than average time.

That's all good, but I have a lot of watchful waiting left to go. There are a few minor issues, I'm often tired and the medications aren't the most pleasant. But if I can continue to be the good patient and take my medications on schedule, eat well, and stay active, I expect to continue to do well.

The main highlight this week was another visit from Gene, and from Marilyn's sister. We had a very nice delayed birthday celebration.

Wednesday, March 21, 2007

Appreciating my Caregiver

Role reversal isn't always comfortable, especially for a role that has taken on a life-saving significance. I've been my own caregiver ever since day one and I found they were cutting on my genitals*. Obviously, as well as I could then think, I could tell these people didn't care about me, so I vowed to do it myself as best I could. Then I discovered I had 4 brothers, and they weren't in much better shape, so I did the only thing I could, I took care of them, too. Then I went on to taking care of friends' kids, and even was a single foster parent of 2 teen-aged boys.

So, it is with much gratitude and virtual disbelief, that I find my life partner of nearly 17 years taking such good care of me. It's hard letting go, but Marilyn has been ultimately patient with me and very helpful.

I did get my stem cells last week, and now it's a waiting game, waiting the 100 days until I can go home, but also watching for any symptoms and addressing them quickly. None so far, but the preventative medicine has made me feel a little tired.

*A new report has just been printed in the British Journal of Urology, Fine-touch pressure thresholds in the adult penis that concludes, "Circumcision ablates the most sensitive parts of the penis." Besides, it just plain hurts like torture!

Wednesday, March 14, 2007

State Champs!

The Pee Wee Warriors won the state championship in the Tier II A division!

Gene is the star goalie in the lower right, with the white pads.

Congratulations to the whole team, and many thanks for a lot of work to the coaches, managers, and parent volunteers! Especially those that helped get Gene to games and practices when we couldn't.

For the hockey fans out there, a little more detail is probably in order. In the tournament, there were 2 divisions, and Gene's team placed 1st in their division, beating opponents 6-1, 4-1, and 7-1. In the first playoff game they won 5-2. The final was a nail-biter, with the other team scoring first and our team catching up, twice, before Gene's team pulled ahead and won 3-2.

What else is there to say? For me, conditioning has started, and everything is on schedule. Yes, I am having minor symptoms from the conditioning chemotherapy, but not bad. I should be able to work nearly a full day tomorrow, but it will be day by day after that.

I'm so glad for your comments and emails. It helps a lot to help me remember, as a good friend recently said, "More people are hoping and praying for you than you know." Likewise, I'm wishing the best for more of you than you know, as I know I'm not the only one with health challenges. As Gene's goalie coach told me, "Fight Hard!"

Wednesday, March 7, 2007

On schedule

The transplant schedule has stayed the same since last week, it all begins next Monday. The answer to the question "has the donor confirmed" was "yes," so I'm very happy about that. I've been trying to think what it must be like for a young man to do this. He must have a very strong sense of community, and a good relationship with his parents, since I would be about their age or more. It's a fine thing, that's for sure.

Regarding my lung function, it was reassuring to learn this week that my DLCO test result of 47% should be compared to 80%, which is normal, not 100%. There's no sense in letting it get worse, though, so I started my weekly treatment of Prolastin, with no side effects that I can tell.

Moving back and forth between Seattle and home has been a slight challenge, but it's been very nice to be home for a little while longer. Thankfully, the street construction by Mercer that could only be done at night (all night!) is finished. That only leaves the annoying day-time construction noise of the new building just beginning construction right outside the window, across an alley. We've put in for an apartment on the other side of the building. The sad thing was that we had just noticed a raccoon couple playing in the trees on the vacant lot just before they tore the trees out. I thought it would be fun watching the raccoons the next few months, but they're long gone, now.

It was so good to see some great friends at work yesterday when I went to pick up my new building pass. I hope to be able to do that more on the good days while I'm in Seattle. Actually, the picture on the pass is shortly after my first stem cell transplant, so I look almost like it, although a touch more gray these days. The young guy on the old pass is long gone!

Hockey season is almost over, but there's still the state tournament this weekend! Go Team!

Wednesday, February 28, 2007

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.

Wednesday, February 21, 2007

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.

Wednesday, February 14, 2007

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.