My initial idea in planning this week’s Guest Post was to find something inspirational, something affirming, reflecting the joy and optimism of the holidays. Then I encountered Brian Koffman’s post from last week. His blog is titled Brian Koffman’s Awesome Transplant and CLL Adventure . Brian started writing his blog in April 2008 when he was looking towards a stem cell transplant with an overseas donor.
I too have a rare form of CLL. I too went through a transplant (in 2004). I am blessedly still in remission. Brian is not. He is at a crossroads now, trying to decide on a second transplant. So when some of us are trying to decide on what foods to fix for our Christmas feasts or trying to decide on the perfect gift for our loved one, Brian faces a much more difficult and somber choice.
Besides our similar disease and treatment course, Brian and I also share something in common. I am a cancer nurse. Brian is a family practice physician. Knowing too much and knowing too little…
I know we will all have prayers in our hearts this season, we community of cancer survivors. And I trust we will include Brian and all of our fellow travelers in those prayers and supplications. Have a safe and blessed holiday. And take care, Dennis
Security is mostly a superstition
The good question has been asked: Am I rushing into a second transplant because of my desperate hunger to be done with this internal villain? Am I deciding more with my heart and than with my head?
I don’t know how much of a role my impatience plays, but I know my temperament does influence how I see the world. How could it not?
I try to factor that in. I try to bounce my thinking off others including my doctors, my friends and family, my readers likes you, and my CLL support group.
I try to play out in my calculating mind and on the keyboard the various plans and their risks.
Yet in the end, I think Helen Keller nailed my world view when she said:
“Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold.’
This is an overly broad and sweeping damnation of timidity. I would advise any friend or any patient to take all necessary precautions, buckle up their seat belts, and avoid the high risk zones of life if they can.
The last dependent phase hangs out there, and in doing so hangs the rest of the critique out to dry – if they can.
Can I avoid a transplant? Absolutely. But for how long and at what cost?
Is playing it safe, not safe in the long run? Must I take the big risk for the big reward?
Both my head and heart answer with a screaming YES to both questions.
I wish there was a pill or a shot or an infusion that could make this nightmare disappear, but there is isn’t. Not yet, anyway. No way am I happy about the prospect of a redo transplant with harsher chemo and the the likely ravages of GVHD.
I am no longer the adrenalin junkie that I used to be. I admit I still crave novelty, but stomatitis is hardly the experience that is missing from my bucket list.
I think and feel that this most frightening and difficult route is also the most logical and safest, if that makes any sense.
But I will keep researching and reassessing. Let’s see what Dr Forman says in a little over a week.
CBC and IVIG infusion tomorrow.