Friday, February 4, 2011

Things We've Learned

I opened the Emmaus Road newsletter, News From the Road, and learned that today is World Cancer Day (and Keith’s birthday – but we already knew that.)

Dr. Kennedy told us that Paul and Jeff have 8 out of 10 haplotypes in common.  Nice!

The skin rash that has plagued Jeff for a year or two is called petichiae and is related to his disease, making that the first symptom of MDS that he experienced.  It appears on his legs and if you enjoy gross medical pictures, you can Google it.  No link provided here.

Thanks to Miss Coaches, Jeff’s high school Latin teacher, Jeff was able to pronounce petichiae properly on his first try.  Amy could not. 
http://www.merriam-webster.com/cgi-bin/audio.pl?petech02.wav=petechiae

Jeff’s treatment buddy, Marty, the Irish Dude, is named Daniel Martin, thus the confusion over his name – Marty or Daniel?  Marty arrived for treatment Monday using a cane and was deferred for treatment because he needed another blood transfusion.  Jeff still has not needed any.  Marty needs prayers, too.

Jeff should avoid salty foods although he seems to crave them.  If he indulges too much and then spends too much time on his feet, his calves swell and become rock hard.  He claims that it’s hard to tell if it's muscle or…

Jeff’s blood counts have been “excellent” according to the oncology nurses.  He brags about his “excellent” blood and boasts that his blood is the envy of… the cancer ward!  Some of his counts are actually in the normal range now, although low.  Kim says her dad looks like he is, “on the low side of normal.” 

Nick can not only rise early in the morning to drive Uncle Jeff to treatment, he is man enough to watch the injections!  He is a good companion, too.  Way to go, Nick!

It is worth advocating for yourself.  On Jeff’s request, Dr. Kennedy was willing to schedule this month’s biopsy early enough to possibly avoid the next course of Vidazzling.  If bone marrow looks good (or more scientifically, meets some medical criteria) and there is a match, he could conceivably have his transplant soon.  We'll see.  He asked Dr. Kennedy if he should stop trying to “align the stars.”  She assured him it was worth trying to get the results of the biopsy in enough time to schedule the transplant before - or instead of - the next course of Vidaza.  Matchmaker, Matchmaker, make me a match…

4 comments:

Jill Malefyt said...

Hi Amy and Jeff,

Tim and I send our thoughts and many prayers your way. Love Jill

Tracy said...

I, too, had Miss Kotchess (Coaches?) for Latin. She was about 4 foot nothing, old, and quite the character. Bob's memory of her is that some of his buddies (he's not claiming to be one of them, but I've always had my doubts) locked her in a closet their senior year. The fact that she was still teaching when MUCH younger Jeff came along. . . Anyway, hopefully Jeff won't need to remember how to say the weird word much longer! Glad to hear it's going well -- for the "low side of normal"!!

Jeff and Amy said...

Tracy,
Miss Kotchess! I knew I didn't spell her name correctly (she wasn't my teacher, after all). Jeff always said that Miss Kotchess loved him although he didn't know why since he was a terrible Latin student!

Palmer said...

What is IT about Latin teachers?? mine, Miss Baeshore was 4 ft. nothing and old too!! She did have a real leopard coat that she sported in the winter.

The "low side of normal" sounds like a good name for a sitcom.