Bernie's Memorial

Bernie's memorial service was wonderful because he was a wonderful and very funny man with a fine family and friends. I wish I had known him longer, not just by having met him sooner on our separate life journeys, but more so by his living longer and beating his leukemia. Another sad day.

Bernie died of complications of his multiple courses of chemotherapy for his AML. The nasty chemo was necessary in the hopes of cleaning up his acute leukemia enough to allow a life saving transplant. I visited him at Hoag and at City of Hope where he remained positive and full of gentle humor and a contagous laugh.

In May 2010, he developed AML, acute myelogenous leukemia, possibly from his prior therapy for CLL or just from the CLL itself. That was diagnosed in 2004 when he presented with 4 grape size nodes in his neck and 95% bone marrow involvement Soon after, he had FR which is supposed to be safer than the riskier FCR combination. Dr. Hamblin has recently posted on this exact topic on his blog which I highly recommend it to anyone with CLL or not.

In his last few weeks Bernie was in hospice care for a difficult chest infection which he couldn't fight as his immune system had been bulldozed by chemo. Unlike Robert's situation, at least Bernie and his family had a chance to prepare for the end.

I now personally know five people who have had or tried to have transplants for CLL. I am the only one still alive and I rejected the graft.

None of them died of relapsing disease, though at least two of them had pretty aggressive disease at the time of their demise. They all died of complications of their treatment- mostly infections and of those mostly pneumonia, but also cardiac, pulmonary and renal problems factored in.

Besides learning again that cancer sucks, besides knowing that I been to too many "celebrations of a life", besides seeing just how important fathers are, what have I learned?

That transplant are very risky. People die or and may how don't are miserable.

What usually kills you is the induction therapy and its collateral damage, especially to the immune system. You can't fight off the pneumonia bugs if you have no soldiers. And it doesn't help if your kidneys or kidneys or heart are damaged. And it is a twisted irony if the treatment to control the disease causes an aggressive acute leukemia as it likely did for Bernie.

What to do, besides mourn?

Don't give up.

Don't write off transplants or chemo cocktails, but maybe try to put them off as long as possible.

Look for other options.

I am reassessing my plans. I must.

I am counting my blessing. I should.

They are new focused treatment on the horizon I will share soon.

I am sad and scared, but I am also optimistic.