A Thought - full Day

Friday - April 25, 2014

Today - my father's birthday - is always bittersweet.  Our father, Herb Carter, would have celebrated his 82nd birthday today but he died suddenly of an aortic aneurysm shortly after celebrating his 63rd birthday.  So many years have passed, milestones commemorated, grandchildren born, all without his cheery, impish, supportive presence.  Herb Carter was truly a marvelous man.  I miss him, I miss him, I miss him and yet - daily - I am heartened and amazed by the abiding strength of his love and connection. A cherished legacy. What a remarkable father!  He can still make me smile through my tears.  I thank God that he did not suffer a long death and that he did not endure the anxiety and grief of facing a long illness.  One day he was excitedly enjoying family travel in Australia and the next day after a brief hospital visit he was gone - within minutes -  in a Sydney ER.

This year's ache of his loss is deepened and refracted by the news that a dear YOUNG friend has relapsed a second time with Hodgkins Lymphoma and is now preparing for an allogeneic Bone Marrow Transplant.  Our prayers and thoughts are focused fully on her and her family and our anxiety is channeled into action.  Bone Marrow donation remains the exception rather than the norm yet it is not the invasive bone marrow biopsy technique that exists as common knowledge (NOTE: my bone marrow biopsy was equivalent to the painfree pressure / discomfort of my c-section and remember that this invasive procedure was done by a MED STUDENT with an oncology fellow telling him what to do step by step sotto voce right behind my manhandled hip).  Today's bone marrow donation is essentially a longer kind of blood donation.  If we simply spread the word that the common image is OUTDATED and WRONG, perhaps more people will register and more of us who suffer from blood cancers will have an opportunity for treatment and for long-term survival.

An allogeneic Bone Marrow Transplant still looms for me as my next step in case I relapse. And yet, I have already batted ZERO off the Bone Marrow Registry. There's nothing quite like that knife-slice knowledge that you have NO MATCH coming off the registry. That's it. An allogeneic bone marrow transplant is the last medical step and recommendation to thwart that scourge cancer. But no one matches you. You have come up EMPTY. What next? You're on your own. Just you, your own oblivious malfunctioning bone-marrow, and that conniving cancer that has duped / invaded / hijacked your body. There's nothing equal to that pit in your stomach as you face mortality straight-up, as you see your kids' terror as they try to stay strong for your sake. And yet, you know that there MUST be a match somewhere - in someone. If only a donor would come forward with a quick cheek swab and then perhaps an outpatient simple blood donation process. If only ... if only. Have you registered as a donor?

Megan says it better.  

"Some difficult news has struck a community that is very dear to me and the next few months might be hard for all of us. If you see that I'm sad and you're looking for something that you can do I have MANY suggestions:

* Please, please, please if you are considering signing up to be a bone marrow donor and have not yet gone through with it, go to be http://bethematch.org/ and get a kit to swab your cheek for free

* If you need any information that might make you more comfortable with being a donor, feel free to ask me. The normal, outpatient procedure if you're asked to donate is a week of shots and a few hours donating blood in a chair.

* If you've got some spare change, donate to Elizabeth Stone's efforts to fundraise for the Leukemia and Lymphoma society or drop some running hints before her *half marathon* in two days. http://pages.teamintraining.org/nca/nikewhlf14/elizabethstone

* If you're already on the registry or you're not able to donate, see if you can spend some time this week dispelling the misinformation about donation. No big needles. No nights in the hospital. No long term health risks.

* Pause and take some time to get some perspective on your day. Life may be difficult, unfair, and heartbreaking, but we are here and we have the opportunity to share so much gratitude and hope! Keep the faith. Take care of each other. Believe in magic. Those words have never been more true."