Mental Gymnastics

I have the great good fortune of an incredible support network. I’ve said it many times not because I’m trying to convince myself of anything, but because it’s true.  And for that, I continue to be grateful and truly humbled.  I can’t tell you how much it means and I honestly hope you don’t have to be in my position to find out who your real friends are.  I’m amazed at how many real friends I do have…and again, many more acquaintances who have stepped up to the plate and been absolutely extraordinary in the face of my challenges. I’ve used this medium as my own therapy to talk things out, to work out the details, to come to grips with the reality of a long-term, to-the-death illness that I can’t even see except through lab reports and the expertise of the many, many medical artists who are manning my very own ‘situation room.’ That’s at least what I imagine in military terms is happening. On a micro-scale, that is exactly what is happening.

On a macro scale, I have my ups and downs and you see my life’s lessons I’m pulling away from this journey.  Everything I’ve written has been entirely true although some of what I write tends to be subjective. What I don’t typically talk about is how I feel about what’s happening, mostly because men typically don’t do that very well and to some extent it has the possibility to come across as whiny. I’ve been trained extraordinarily well to be strong in the face of adversity, to be stoic in my discomfort, and to compartmentalize feelings from reality so I can do my job.  That is tremendously important as a pilot, but I’m not in a cockpit right now. I work from wherever I can, whether it’s in an office, from my home, or from a hospital bed.  Perhaps that’s the beauty of the 21^st century and perhaps it’s a way to keep my mind active and sharp when Newtonian physics conspire to keep me immobile: ‘a body at rest tends to stay at rest…’ But feelings are breaching the watertight integrity of their compartments and I’m battling the reality of cancer. As much as I endeavor to be positive, cheerful, and just a bit of a wise-ass, I struggle with the new normal. I struggle with clumps of hair falling out and while I’ve never been nor will I ever be a Calvin Klein underwear model, there’s that part of me that cringes at the sickly looking guy in the mirror losing hair, muscle tone, and weight. It’s not just a little dismaying. It’s one thing to know in your head that this stuff is supposed to happen; it’s another entirely to watch it happen to yourself in relatively short order. Walking around the block with a surgical mask has the unwitting effect of making you invisible.  People make eye contact just long enough to register alarm and look away. Funny though, the mask does not seem to deter panhandlers!

I can remind myself of all the things I wrote, of all the things I knew were going to happen, of all the things I have that others don’t, yet there just aren’t words that adequately describe the feelings that race through my mind.  I’ve seen YouTube videos of people dealing with cancer, the very things I’m facing and the struggles they’re facing. I can take some solace in the fact that I’m not the first or last to go through this and there has been great compassion as I’ve said many times. I’ll also say again, I don’t throw pity parties, but I felt I should write about this today to put the reality of leukemia out there and to re-state this is a long-term thing that requires endurance on my part as well as those who hold me up when I get weary.

I’ve learned an awful lot about leukemia where I’d rather remain blissfully ignorant, but in a sense, I’m grateful my doctors haven’t allowed me to be passive about my treatment.  More than peppering me with questions about delightful details like stool consistency and the kind of discomfort or pain I’m feeling, they’ve been very direct in interactive discussion about the course of treatment, sometimes uncomfortably so, but truth be told, I can’t imagine trying to navigate treatment without being informed and involved.

So, the past few days at home have been a good respite from the physical exertion of the hospital stay. Tomorrow, I start a consolidation round of chemo to keep the leukemia in check while we await a bone marrow donor.  It could happen quickly, or it could stretch out a few months. Being the white bread Caucasian that I am, it may not take as long as someone who is of mixed or complicated ethnic descent. While I don’t harbor any unrealistic expectations about this happening quickly, I do want to put this behind me and get back to life as I knew it.  Not 'normal,' mind you, but a life less restricted and one not defined by a diagnosis. I have things I have to do.

Music du jour - Don't Give up (You Are Loved) by Josh Groban.

Be well, stay strong, much love to you all!

 

Let the Games Begin!

I still don’t think this has sunk in.  I haven’t mentally processed the fact that I even have leukemia, let alone that it is a deadly disease that threatens to kill me, left unchecked. From the time the doctor faced me and told me the stellar news, I’ve been in practical mode, getting things done: packing for a month-long stay (maybe more) at the hospital, doing laundry, setting bills to pay, and talking to family about what I’m facing in the days and weeks ahead. Thankfully, I was able to come home over the weekend and get some of the details taken care of, but when your life has just been ground to a screeching halt like this, it feels like everything is in a state of chaos.

Physically, I have felt tip-top with the exception of a headache courtesy of my spinal tap on Friday.  I still have doctors coming in today, surprised that I’m feeling as well as I am considering that 50% of my bone marrow is apparently teeming with cancerous cells. Apparently 20% is the benchmark, so you can see this isn't inconsequential. That’s a comforting thought, huh?

Mentally, I think I’ve accepted what’s in front of me and have mapped out what I can expect in broad-brush terms. That helped me to discuss with my employer how best to move forward. Everyone there was incredibly supportive, far more than I could have expected, especially in that I’ve only been a part of this organization for just over three months. And the real kicker is that the blood test that started this whole adventure was a part of the company’s insurance incentive. I’m not the first person to have had his life literally saved as a result of this simple screening.

I’ve spoken to a number of people in preparation for the next month and on the one hand, I’m faced with the stark realities of chemotherapy and its side effects; on the other, I’m feeling better about being able to weather it. I’ve also run across people who would urge me to seek alternative forms of treatment or fly to another city for another treatment option. As far as I can tell, I’m in the best of care and am being handled carefully, deliberately, and aggressively to ensure my odds for survival are the best.

Thanks to my friends Betsy Peterson and her partner Tracey Rush who is on the downside of Hodgkin’s lymphoma (the crowd roars), and their friend, Linda Huntimer who is also a cancer survivor and was able to get me a lot of practical information quickly. Big thanks to Paul Pavao, friend of mine from many years ago and father in-law of my own daughter, who is a fellow AML-survivor.  That my daughter’s father and father in-law are both dealing with acute leukemia kinda had her more than just a little concerned.  What are the odds? 

So, I’m sitting in a private hospital room – a room with a view, nonetheless. In less than 24 hours, I’ll have toxic chemicals dumped into a special IV line called a “pick line” which will attack the nastiness inside my bone marrow that threatens to take me out. We have some tests yet to run including another bone marrow draw, which I am eagerly awaiting, like having teeth pulled without Novocain. But that will give us what we need to know. Maybe then, it'll fully sink in and I can emotionally process this.  I know at some point it will hit me and I'll have the same shock as those I've broken the news to and come to terms with it all. For now, onward toward beating this thing!

Let the games begin!