Tuesday, September 1, 2009

Platelets were staying up, but I wasn't

At UCSD, my platelets have stayed up at a salubrious 231,000 a full 10 days after my low dose IViG. That is more very good news.

The other good news is that my FISH studies show that I have a normal male karyotype. My wife will vouch for that. No old familiar 11q del and no clonal evolution were found, though it might well be sampling error.

The recent bad news is that my previously clean as surgeon's sterile knife bone marrow is now 2.8% filled with CLL, and my nodes are growing, albeit very slowly. Bad to the bone, as my "game worn" CLL Patient Advocate states.

Adding it up, it means I have some time to make my big decisions about treatment. How long I have before I am forced into action is like guessing the time it takes to drive anywhere in LA. You can never really be sure. You are almost guaranteed to arrive too soon or too late.

Dr. Kipps was running behind (no surprise there. he works in patients like me all the time), so I missed my chance to hang-glide. He thinks he saved me an orthopedic consult and he might be right with my wobbly knees. As a result, my platelets may be floating in the normal range, but my crocs are still stuck on the ground. No time to jump off a cliff at the glider port .

Maybe next time. If I haven't started therapy.

I promised I would post soon on my reset plan, and my data collection is nearly done, but head is still murky trying to wrap around all these changes.

By the way, our time away at the Rancho Bernardo Inn was wonderful. They treated us like valued guests though we had snagged the cheap seats. It was a great chance to stop and sit and do next to nothing.

I could never understand my parents going on vacations to sit on the beach, and just veg out. Now, now, 4 plus years into a tough fight with CLL/ITP and 2 years short of 60, I am finally getting the attraction of having no attractions or distractions.

Very helpful to clear the brain.

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Blogger Alison said...

Some good news - time to think - good on you, (think I've said that before).

September 2, 2009 at 3:18 AM  
Blogger Judy Cleri said...

Hi Dr. K,

Hum....I love the good news, not so crazy about the bad.......but am glad you are taking time to get things straightened out in your head.

Now on to vacations......how come it took you so long to figure out what a vacation is all about? I always thought you were one pretty smart cookie. Now I am wondering. LOL Glad to see that you have finally caught up with the rest of us and realize how wonderful sitting and watching the waves can be.

Ok......now on to Hang glidding....as much of a chicken as I am, I did it.......awesome feeling.......so make sure you make time.

Off to the Orthopedic Surgeon and no its not because of hang gliding!



September 2, 2009 at 9:23 AM  

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