Saturday, April 11, 2009

Recalibrate, Reset and Move On

This is the first I learned that transplant therapy wasn't always as successful as I had understood it to be and that my chances were better than described to me now. I must impress that much of this comes from the implication (garnered by all) that treatment wasn't about if ; only when. I was resentful after this, having been deluded so. I blamed others, none more so than myself.

Consistently, Jenel and I stayed focused on what's happening to me now, in the immediate. Since my diagnosis an understanding has emerged that's not necessary or even productive to know more you have to. In the immediate context up to this point, we're scholars of my ongoing treatment and Jenel is familiar with all the nomenclature she uses as an oncology radiation therapist. We are only cursorily versed on what comes next; something like, " ignorance is bliss" was the contrivance. We determined that hypothesis and speculation wasn't very helpful, as we had learned so many times before with disappointment.

But, we regroup, recalibrate our focus, optimism is reset and we move on.

My itinerary has been long and at times excruciating, the waiting interminable, but I'm finally in complete remission. I know, I said that before, the distinction being that it was only presumptive then, now it's unequivocal. However, only for a little while. I have AML: type monosomy 7. It is a very tenacious, chemo-resistant cancer, and for that reason, I require a bone marrow transplant.

Reinforcements are on the way. My brother Sean, donor designate, comes in Monday night. My biopsy is conclusive, doctors have been convened, and a plan has been made. After a flurry of preparations and logistics, I'll be returning to the hospital for transplant therapy; April 21.

Before all this, Jenel and I met with the director of bone marrow and stem cell transplantation at UNC; the czar of bone marrow oncology there. Dr.Tom Shea exudes paternal wisdom and speaks with the requisite calm and restraint that comes with a life time of dedication. Anxiety and fear dissipates, even though the prognosis isn't that great. What? He continued with measured geniality and just enough ambiguity to be both positive and frightening;..."the treatment plan to date has been successful"..."a unanimously regarded protocol, etc."..." within the acceptable range of error"..."statistically speaking and with all probability and given the cytogenics of you Leukemia"..." there is only a 40% to 60% chance of success"... provided my colon doesn't fall out!

I can't describe the side effects resulting from transplant therapy, too many possibilities and writing them down would only make my eyes glaze over with dread. Needless to say, improving health and the hubris that comes with familiar surroundings that I'd grown accustomed, hadn't prepared for that revelation. Until now, I felt I was winning this fight, or least some of the battles; already planning for life after cancer. To be sure, these were considerations that are empowering , essential to a positive attitude; delusional nevertheless. I had expectations, UGH! when am I going to learn. ...Next.

Recalibrate, reset and move on!

Whining is good, I always say. But it hasn't had the same allure as of late, or given the same satisfaction. It can get old complaining about the same thing all the time. My audience seems to have diminished lately, maybe that means; "keep it to yourself". I hope not! If so don't tell me, I don't want to know. There are notable exceptions of course; to those who don't have a choice, I apologize.

Morbid curiosity aside, at a certain age any insight into cancer can be helpful; it has been to me. I'm thankful to those who have shared. Or perhaps it's redundancy. There are so many people afflicted with cancer these days, we can't attend to all those that are close to us. Before this experience, I never knew anyone with cancer , now sadly, I know too many. I hope I'm not becoming maudlin. I strive to enlighten and share my frailty and inexperience with some conviction and perhaps a little brevity, where I can. I realize, of course, I have a penchant for examining the darker side of my own condition in some Machiavellian effort "know thy enemy". I appreciate your indulgence, it has been abundantly helpful to do this.

Well, for now detente has been restored. We'll recalibrate our focus accordingly, reset our optimism, and move on. I 'll be gone for 3 or 4 months this time. At first in the hospital and then in halfway house for recovering patients, those who need to be near the hospital for regular monitoring or in case something starts to go wrong, generally meaning... I can't be left alone, while I'm there. So , I need to organize a calendar where we can recruit people to spend the nights with me and allow Jenel much needed time to spend with her other cancer patients at work. More to follow soon. Always remain generous and charitable to others as you have been to me.


  1. Wow Tom, little did I know that reaching to hug you would elicit such a vehement response. Suffice as to say that it wasn't the cancer victim I was hugging; I hug everybody. Please don't take it as a proclamation of my insensitivity to your compromised immune system. It wasn't. What I felt upon seeing you was pure joy. No pity. No, not even empathy.

    I get my greatest strength, and always have, from the people in my life who I see as fighting the good fight. By that I mean survival with dignity and grace. Humor with compassion and most importantly, hindsight. It is hindsight that most assuredly propels us into our next life experience. It is all we have to maintain and strengthen our coping skills.

    I've never been much of a whiner. It's not my style. The "I refuse to let this battle, whatever it may be, get the best of me" is my personal battle cry. And it serves me well, though sometimes it manifests itself in frustration and anger.

    The inner person you so aptly describe on your blog is what I notice first and foremost. Just like I mentioned about my dog. Your constitution doesn't just keep you going, it keeps me going. And that is just about the best compliment I can give anyone.

  2. Karen, your sensitivity is only surpassed by your eloquence.Your insightful response is my greatest reward and certainly will inspire others, as it did for me.
    I'm sorry my observation was misconstrued, it is not my sentiment nor my intent to alienate anyone,certanly not you or anyone else I feel so close to. It's almost always worth the risks for a hug. But I must always remain vigilant even discriminating about who I embrace. It can be awkward. Thank you for allowing me to feel relevent at a time when it's so difficult to do so. PS The story you related to me the other day about your students was exceptional, truly inspiring, definitely worth sharing.