Thursday, November 25, 2010

Thanksgiving 2010 and a time to count my blessings

I am loving spending a cold lazy day by the fireplace, reading, writing and ignoring my long to do list. My son provided the necessary holiday celebration yesterday with a wonderful gathering of his friends in his apartment. Yasmin and Ben fed us all well (no turkey) and I can't imagine a better way to have spent the day.

Today we strolled along the Pacific with the tide so far out it seemed you could have walked to Catalina Island without getting more than waist deep into the wet coldness of the ocean. And the purple and orange sunset and the smells of the turkey cooking and the clear crisp air completed the perfect land and seascape. Another magic day turning to night in SoCal.

My leukemia and ITP have become blissfully boring again.

Yesterday I finished my sixth and final dose of rituximab 500/M2 along with IVIG. I have started to taper my cyclosporin down to 100 mg 2 x a day

This small drop in cyclosporin from 150 mg 2 x a day was enough to get my BP back in the normal range. My uric acid (think gout) is back in the 7s from 9.5 and my creatinine (a measure of renal function) has stabilized in a safe range after slowly rising for weeks.

My concerns about anemia have not materialized, as my fall in HG has also stopped. My total lymphocytes are a bit low (0.66) from all the rituximab, but I am not concerned. My neuts are adequate and the IVIG helps protect me. My infection risk is not much higher than its usually elevated status. The only cloud on the horizon is a slowly rising MCV, now 102, (normal is 80 -100) which can be a subtle marker for the coming storm of bone marrow failure or MDS. But I just had a bone marrow biopsy a few months back, and it looked very good, so I am not too worried about that either.

Oh, yea, my platelets were an astonishing 351,000.

And all my palpable lymph nodes are pretty much gone- small shotty things of no consequence.

So my ITP seems to be off the table for now. And the CLL is in retreat. How far in retreat is a question that won't be answered until the spring with a bone marrow biopsy and CT scan.

I have managed to avoid the nasty side effects of cyclosporin and with the ability now to safely taper the dose, I have dodged that bullet again.

I can stop my weekly trips to the cancer infusion center and will try to stretch my visits for IVIG to longer than 2 weeks.

And I shouldn't need to decide a darn thing about my CLL for a few months.

Less to blog about.

More to be thankful for.

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Monday, November 22, 2010

The Featured Speaker?

Check out and meet me in Charlotte

But first IVIG and Rituximab

Sunday, November 7, 2010

The choice not to tell. Refection on the CLL death of Jill Clayburgh

Here is a letter I wrote to the CLL listserves that are such a valuable resource for me.

This has been a hot topic.


We are all a bit disappointed when we learned that yet another celebrity, this time an Academy award winner, Jill Clayburgh, chooses not to tout their CLL as a fund raising banner like others have done so successfully with breast or even colon cancer or HIV.

Maybe it is because it is so easy to hide, so discreet a disease. A disease that many can ignore for decades if it chooses to ignore you, so why raise an issue when the rest of the world can be so judgmental, dismissive, and exclusive. No surgeries, Maybe even no trips to the hospital , even to the very end of life. If you are lucky.

Sharing the news can needlessly prevent a raise, drive away paying clients and needed work, and scare well meaning friends and family.

Would that it was a different world. That we, to borrow from Dr. King. were judged by the quality of our souls and not the clonality of our B lymphocytes.

If more CLLers came out of the closet, would it change the world to be a more accepting one? it sure has for other issues like HIV/AIDS.

It is not for me to judge how others handle such a personal and private issue, and yet I too wish that we had a superstar fund raising publicist who could help us raise the money to do the research so that we can all, soon and in our time, exhale and say, I remember well CLL was an incurable disease.

Be well. Stay strong

We all in this together


Jill Clayburgh’s co-star had no idea she was sick (AP)
November 8, 2010
By amin

NEW YORK – In one of her final roles, Jill Clayburgh plays the mom of charismatic Viagra salesman Jamie Reidy (Jake Gyllenhaal) in the romantic comedy “Love and Other Drugs.”

Gyllenhaal and the film’s director Edward Zwick said they had no idea the Oscar-nominated screen legend was battling chronic lymphocytic leukemia at the time. They learned of it after their work together.

“I think part of her sickness is what made her live her life … and really cherish the moments she had and cherish the people she was with,” said Gyllenhaal while promoting the film in New York on Sunday. “And she did when she was with us, cherish those moments, and they made us all love her.”

Gyllenhaal filmed with Clayburgh in September of 2009.

Clayburgh, 66, died Friday at her home in Lakeville, Conn., after a 21-year battle with the disease.

Gyllenhaal credits Clayburgh’s iconic portrayal of a divorcee in 1978′s “An Unmarried Woman” with helping his own mother through divorce.

“It helped her through that time in a way that no other movie or anybody else had,” he said.

“She left an indelible impression on me,” he said. “You don’t really need much time to work or meet somebody and know that they’re really alive … and when I heard that (she was sick) I just thought, you know there’s that moment when you go like ‘oh, like maybe that might be why she was so extraordinary.’ And it makes me want to encourage people to wake up and live it like Jill did.”

Zwick said directing Clayburgh was “a real privilege.”

“Her legacy is an extraordinary kind of acting which is of the highest level of authenticity but also of comedy. She managed to do both those things at once,” he said.