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.

6 comments:

Fall36 said...

I'm currently being treated at the SCCA after a mini-allo transplant. I know what you had to go through. Right now I have GVHD of the GI tract. I don't know how much longer I can take the discomfort, but, I hope the steroids and the healing would start soon. The people here at the SCCA and the Pete Gross House are great. It seems we are all learning from each other and gives us hope.

Gary Burlingame said...

Dear Fall36,

Nice to hear from you. I'm sure sorry for the discomfort, though. Makes me realize how fortunate I am, so far.

Yes, the people there are wonderful. I agree with the learning, and I participated in as many studies as I could, to help those following after.

Please feel free to send me an email if you'd like to share more.

Thanks,
Gary

Pat Killingsworth said...

I hope that no new posts means that all is well with you! Can you update us on your condition? I have friend with Myeloma (I have it too!) that will soon be undergoing donor transplant as well. He is pretty scared. I will pass on your thoughts and comments-Pat

Gary Burlingame said...

Pat,

Yes, indeed, no new posts means everything is fine. A recent biopsy said no abnormal cells, which is what I expected, but it was still very reassuring. It is scary, and I had quite a bit of anxiety myself. But a positive outlook, and keep as active as possible helps, I think.

I've talked with other folks with multiple myeloma, but it's surprising that you both have the same thing.

But yes, I'm doing well, and I have every reason to believe that you both will, too.

Gary

Pat Killingsworth said...

So glad that all is well! Thank you for the encouraging words! My wife and I (also a cancer survivor) have a new web site www.helpwithcancer.org. Visit if you get a chance. Good luck- Pat

Anonymous said...

Hello,

You may or may not have seen the forum I recently started that is 100% dedicated to Multiple Myeloma. Please take a moment to sign up, tell us your story, and support others like yourself. If you like the site please add a link to us as well... http://www.myelomaforums.com

Thanks,

Andy