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Monday, March 9, 2009

Back at Stanford

Day -4 Health Score 81

I hitched a ride with a friend down to Stanford today. I didn't want to drive and leave my car own here for a month. Because I was somewhat fatigued last week, I got some labs done on Saturday and my hematocrit is 30%. I am anemic. I am sure that they will probably transfuse me this week. Today I met with Dr Arai to determine if I can get the poison tomorrow. Since I have a mild dry cough, she did a viral swab of my nose again. I guess if that's OK, we will proceed.
The nurse coordinator, Zoe, went over the process in detail and it doesn't sound fun. She said I will be admitted for 2-3 weeks and probably won't be able to leave my room for two weeks. She spoke of nausea (lots of it) pain, fatigue and mouth sores. Bring it on.

It was so nice to go to church yesterday. It's always the hymns that affect me so. The opening hymn was "Count Your Many Blessings". I can't help but be reminded of how I have been so blessed. I don't worry much; I guess that is because I have Barbie by my side. I just soldier on and do what I have to do. Complaining is pointless; asking 'why me?' is an exercise in futility. One can't expect everything in their life to be perfect. My challenge in no more serious than that of anyone else. You can no more compare personal adversity than you can compare personal capability. Those with faith and self confidence will always rise to the occasion. In my case, though, the faith of others has also lifted me to the challenge. How blessed I am to have friends.
Tomorrow should be interesting.

Kevin

3 comments:

Anonymous said...

Dear Kevin, my prayers and thoughts are with you. I know in the next few months I will be where you are and its comforting to know that you will be there supporting me. I wish we both had other choices and didn't have to endure this awful procedure but if it will bring us to complete response I'm willing to take it on. I feel the same way as you do. Bring it on! I got my results for lambha light chains yesterday and it went down only by 10 points. I felt angry and thought Mr. Amyloidosis you are in for a fight. I'm not going to let you beat me! We will beat this awful disease and enjoy a lifetime of moments. Be brave my dear friend. I'm giving you our love and prayers though this. Remember the bad part is only 3-5 days and it will be over quick. I'm going to heart transplant support today and I will let everyone know you are thinking of them. I will ask them to say a little prayer for you. Give my love to Barbie. Be strong! love,
Debbie Douglas

Edward Krug said...

Hi Kevin,
Donna just sent you a comment about how to minimize the oral lesions consequent to Melphalin treatment. The key was not keeping your mouth wet, but keeping it cool, with ice chips, and ice water when the bolus of Melphalin gave the highest circulating levels. If I didn't have any mouth lesions I assume it worked. My assumption is that at least in the mouth, the lower temperature both cut down circulation in the immediate region, and also the Q-10 effect of dropping temperature by ten degrees reduced metabolic rate by half. I remember this from my physiology classes.
I lost 30 pounds in the two months following my bone marrow stem cell transplant, but by four months out, I had managed to find where I had mislaid the 30 pounds and got most of them back.
Luckily it is only the body that suffers. I didn’t have much chem.-fog, or foggy thinking, I just was tired a lot for a month or so. Five months later, I don’t feel right saying I have cancer; I feel so good. I wouldn’t choose to go through it a second time for fun, but also would not refuse it. It wasn’t that bad.
Good luck.
Ed Krug

Edward Krug said...

Hi Kevin,
Donna just sent you a comment about how to minimize the oral lesions consequent to Melphalin treatment. The key was not keeping your mouth wet, but keeping it cool, with ice chips, and ice water when the bolus of Melphalin gave the highest circulating levels. If I didn't have any mouth lesions I assume it worked. My assumption is that at least in the mouth, the lower temperature both cut down circulation in the immediate region, and also the Q-10 effect of dropping temperature by ten degrees reduced metabolic rate by half. I remember this from my physiology classes.
I lost 30 pounds in the two months following my bone marrow stem cell transplant, but by four months out, I had managed to find where I had mislaid the 30 pounds and got most of them back.
Luckily it is only the body that suffers. I didn’t have much chem.-fog, or foggy thinking, I just was tired a lot for a month or so. Five months later, I don’t feel right saying I have cancer; I feel so good. I wouldn’t choose to go through it a second time for fun, but also would not refuse it. It wasn’t that bad.
Good luck.
Ed Krug