tag:blogger.com,1999:blog-91298939575294085092012-01-30T11:15:40.511-08:00In March 2007 Gary began his third stem cell transplant, but this time the stem cells came from a donor.Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.comBlogger251100tag:blogger.com,1999:blog-9129893957529408509.post-57363850692899712007-09-02T16:42:00.000-07:002007-09-02T19:39:04.169-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com6tag:blogger.com,1999:blog-9129893957529408509.post-82172771509611639412007-08-05T17:08:00.000-07:002007-08-05T19:17:33.684-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com3tag:blogger.com,1999:blog-9129893957529408509.post-14108806438179482172007-07-29T11:46:00.000-07:002007-07-29T12:17:12.512-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-74705925267887963332007-07-10T21:52:00.000-07:002007-07-11T08:23:52.794-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-39325394757049286392007-06-19T20:13:00.000-07:002007-06-20T18:21:52.916-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-54303939310416556962007-06-18T11:46:00.000-07:002007-06-20T17:55:21.042-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-24492639933867317662007-06-09T13:18:00.000-07:002007-06-09T15:17:08.512-07:00

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,

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com0tag:blogger.com,1999:blog-9129893957529408509.post-46094627700788475542007-06-02T13:07:00.000-07:002007-06-02T16:43:03.955-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com0tag:blogger.com,1999:blog-9129893957529408509.post-43807881888589218572007-05-31T17:00:00.001-07:002007-05-31T18:28:05.431-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-58565564197400657322007-05-23T10:36:00.000-07:002007-05-23T11:51:14.292-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-79545167069639409592007-05-16T14:09:00.000-07:002007-05-16T14:23:43.972-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com3tag:blogger.com,1999:blog-9129893957529408509.post-48771524886708886872007-05-09T14:31:00.000-07:002007-05-10T09:45:54.961-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-42330479196163578902007-05-03T14:16:00.000-07:002007-05-03T15:04:32.436-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com6tag:blogger.com,1999:blog-9129893957529408509.post-90295742188199654512007-04-28T10:43:00.000-07:002007-04-28T10:53:07.738-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-29287948750156657882007-04-25T12:00:00.000-07:002007-04-25T16:43:12.120-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com0tag:blogger.com,1999:blog-9129893957529408509.post-51190092477245674212007-04-18T16:50:00.000-07:002007-04-18T18:17:53.711-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com0tag:blogger.com,1999:blog-9129893957529408509.post-51258190850610198562007-04-11T15:43:00.000-07:002007-04-11T16:18:08.607-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-32320042016421589932007-04-04T18:22:00.000-07:002007-04-05T19:39:39.906-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-6782394541558013502007-03-28T09:02:00.000-07:002007-03-28T16:48:31.895-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com4tag:blogger.com,1999:blog-9129893957529408509.post-51756800180605305092007-03-21T12:22:00.000-07:002007-03-21T16:45:38.351-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com3tag:blogger.com,1999:blog-9129893957529408509.post-10013471067950431952007-03-14T18:50:00.000-07:002007-03-14T19:39:00.514-07:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-84380060299425543612007-03-07T11:30:00.000-08:002007-03-07T15:20:24.549-08:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com5tag:blogger.com,1999:blog-9129893957529408509.post-54965677993448141152007-02-28T21:20:00.000-08:002007-02-28T21:21:14.520-08:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com1tag:blogger.com,1999:blog-9129893957529408509.post-29872424728965600022007-02-21T16:51:00.000-08:002007-02-26T10:01:54.782-08:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com2tag:blogger.com,1999:blog-9129893957529408509.post-32478783159985102762007-02-14T11:11:00.000-08:002007-02-16T21:35:38.364-08:00

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

Gary Burlingamehttps://profiles.google.com/101373213359301475408noreply@blogger.com10