Comments on: Doldrums

By: Hal Lepoff

Hal Lepoff — Mon, 09 Jun 2008 21:45:06 +0000

Dear Chaya,
I’m glad there is still nothing new to report, because mostly the new stuff is in the form of nasty surprises! The good stuff comes slow but steady. I hope you get to just hang in there now for the long haul of recovery.
Best wishes to you both,
Hal Lepoff
P.S. I continue to glean very useful and crucial information from the website. Thanks so much.

By: Barry B

Barry B — Mon, 09 Jun 2008 20:46:53 +0000

Chaya,

I have read this paper twice, and it still gives me the “willies.” Harvey is a great trooper, and your effort to keep us informed is beyond the call of duty as you have your hands full with your day to day activities. I am more of a “lurker” than an an activit participant. I do read your entries as you publish them. I think the dialogue regarding Harvey’s “adventure” is critical to understanding what a patient may expect with a stem cell transplant, an alternative that at this time is the only way to effect a cure. I am where Harvey was several years ago (but considerably older-72) completing my first set of drug infusions (rituximab and Solu-Medrol) two months ago. The numbers have gone up a bit, and I understand that I can only go through this routine so many times, and then I will be faced with a major decision to “stay put” or move to a more aggressive approach such as a stem cell transplant. Your information is “gold” for me. Thank you very much for your effort, and continued progress for Harvey.
Barry

By: merle

merle — Mon, 09 Jun 2008 11:06:45 +0000

dear chaya…glad to hear harvey is strong in mind and body…you need it with the tp. i had been hospitalized with fevers of unknown origin twice while in seattle during the 100+ post tp and once while home this past december. got out of the hospital with a known problem…staph bovus, which i can’t figure out where i picked up. they were concerned and i was a really sick patient for about 2 days till they got the fevers under control. never had such rigors before!!! fine now and all the concerns about the septicemia are resolved. cmv a little positive so on valgancyclovir and vfend and also on neoral and 60mg prednisone. i just started an oral pred wash to try to fix the taste and dry mouth . gvhd is + but not too disabling. it’s quite a trip…i’ll be back in seattle for my 1 year in july, but my anniversary is june 16th. whew!!!

By: Chris Randolph

Chris Randolph — Mon, 09 Jun 2008 01:29:27 +0000

Chaya, We do not mind that you are not doing the technical part of this journal that you had hoped to do. Personally, I want to hear what Harvey is going thru and cheer for his new immune system while at the same time learning a lot about stem cell transplants from your experiences. You should cut yourself some slack because you have always done so much for all of us with CLL, and you still are. Harvey is making progess and we are all rooting for him and you too.
Best,
Chris Randolph

By: wendy

wendy — Thu, 05 Jun 2008 16:04:09 +0000

Woke up this morning thinking of the two of you and rooting for the home town boy, Go Seattle Slim! Wendy

By: Jon

Jon — Wed, 04 Jun 2008 22:21:31 +0000

Reality TV has no appeal for me, but your Reality Blog (Harvey’s Journal) is a different story. Several weeks ago, when things were looking up a bit for Harvey but he was still facing many difficulties, I found reading your journal made me more anxious about Harvey’s well-being than I could tolerate. Until today, I didn’t tune in on the CLLTopics channel. Odd, since I was able to follow the truly unnerving events pre- and post-transplant without turning away. Perhaps the fact that, at least potentially, this was a shared reality finally sank in — and its weight was more than I was prepared for.

The truth is that, in some curious twist of human evolution, readers of the journal morph into members of your extended family. This may be a mixed blessing for you, if in this case the adage holds that ‘you can choose your friends but not your family.’ Nonetheless, here we are, camped out in the front yard and on the porch, earnest as can be and eager to wish you the best. Don’t you think that, once the word of our presence reaches the cells and micro-critters in Harvey’s body, they will all snap into formation and behave themselves, in the hope that we will all just leave? Any cell that was rational certainly would.

Thank you for your recent posts and “special thanks to Harvey,” [reads the citation] “without whose valiant efforts and intestinal fortitude (not just figurative) the Journal could not have been so inspiring and gripping.” (Stage direction: Brief round of applause.)

By: Tony Pirretti

Tony Pirretti — Wed, 04 Jun 2008 20:26:19 +0000

Chaya, “…. the man has a cast iron stomach”. Well, true enough, but did he ever tell you about the little incident that caused us to be ejected from the Super Bowl in 1988 by the security police? His stomach wasn’t so “cast iron” that day! 🙂 Patty sends her regards to you both, as does everyone from your prior lives back East.

By: Paul Zamecnik

Paul Zamecnik — Wed, 04 Jun 2008 02:20:35 +0000

I guess that doldrums are a whole lot better than many other forms of excitement when it comes to a transplant. I wish you and “Harvey” continued success and lack of excitement. Many thanks for sharing your story. I don’t post much, but I read your blog every few day. I’m sure that there are hundreds of others who do the same. You should know that those of us who write are the tip of the iceberg in terms of the number of people who you are helping. Thanks for continuing to share.

By: bob armstrong

bob armstrong — Tue, 03 Jun 2008 17:53:42 +0000

just a note to all in our predicament…when in hospital ALWAYS ask or demand a PICC line…it takes the misery and risk away from collapsed veins during prolonged IV use…PICCS ARE OUR FRIENDS!

By: Sandy and Lincoln

Sandy and Lincoln — Tue, 03 Jun 2008 14:39:12 +0000

Hi, Chaya and Harvey — stoppin’ by to read your update on how things are going. Continued good healing! We, too, look forward to the day when we can say, not “endure”…but cure.