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Never Say Never

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When I was diagnosed with primary myelofibrosis and decided to share that diagnosis with the industry, I made a promise to myself that I would never write about it again.

It made sense at the time. At least, to me.

When the first question the oncologist asked was: “Have you ever worked with any petro chemicals, heavy metals or solvents?” He didn’t laugh when I answered, “Only since I was two!” That’s when it became instantly apparent that this disease I would be burdened with for the rest of my life was somehow inextricably tied to the industry we all serve.

I waited a year to publish that column. I needed a year to wrap my head around the fact that I’d been diagnosed with a disease that was, essentially, incurable, untreatable and terminal—an unselfish gift from the industry I love. And, then, published it only to help other mechanics and technicians realize just how dangerous working in this profession can be.

I made a point of keeping that column focused on you and the impact it can have on our long-term health and not on the disease itself. “Wear Gloves…” was all about the need to develop a healthy respect for what we do.

I’m not going to lie, as the disease has progressed and my life has changed, I’ve been tempted to revisit that column and its content, but I’ve resisted until now.

You see, we’re all cursed with short-term memory problems, especially with regard to our respective work environments. It’s easier NOT to wear gloves. Or, to wear them when they are torn or shredded, offering little protection. It’s easier NOT to wear safety glasses because they are scratched or distorted or because you can’t remember where they are hiding in your tool box or desk.

I was diagnosed February 14, 2014, and I wrote the column the next day, but, I waited a year to submit it. Selfishly, I didn’t want to deal with the consequences of the diagnosis being out there in the world. Now, five years later, things have changed. The doctor’s favorite expression, “the biological progression of the disease,” has kicked in and the symptoms I’ve dreaded are now a part of my everyday reality. That’s the nature of an exceptionally rare myeloid cancer that is as relentless as it is diabolical.

Consequently, I’ve decided to break my promise—something I am loath to do. I’ve made that decision for a number of reasons, not the least of which is the fact you don’t seem to have taken my warning seriously.

No false admonitions of being unfairly accused! I’m not listening. I’ve been to your shops—at least, enough of them to witness your lack of concern for me. I’ve seen you washing your arms at the solvent tank! I’ve watched you continue to put something together or take it apart with shreds of nitrile hanging from your wrists. I’ve seen that emergency dash to the urgent care to dig a piece of something out of your eye, because it was too much of a pain to put your glasses on. And, I was at a shop recently where the absence of proper footgear resulted in a crushed instep.

So, I’m breaking my promise for a number of reasons. There is just too much at stake—like your health—to ignore the simple things that can save your life.

I’m ashamed to admit the second reason is selfish—a selfishness focused on the benefit of others.

I’m at a point in “the biological progression of the disease” where one of the only remaining options is a stem cell bone marrow transplant. If you, or someone you know, has been down that road, you know just how daunting it can be.

In all honesty, it’s a medically controlled suicide attempt as the doctors have to destroy just about all of your existing marrow before they can introduce the donors stem cells. For me, the doctor I’ve chosen and the facility we’ve agreed upon, it will mean 30 days of isolation as they try to wipe out my existing stem cells—and, my immune system with it. Then, three-and-a-half months of clinic every Monday and Thursday. For all intents and purpose, it means moving to Duarte or Azusa for the better part of four months followed by a single weekly visit for an undetermined period of time.

I’m not whining about any of that. Survival and a cure will far outweigh what constitutes a momentary inconvenience.

We’ve made the decision and started the process. In fact, I just went through the classification testing as have our kids. Then, it’s off to the national and international bone marrow registry for a match. And then, the fun begins. So, what I’m about to ask isn’t for me. It’s for the thousands, perhaps millions, of individuals like me who find themselves depending upon a donor match just as desperately as I am.

It’s for the kids—the little ones—whose lives will be cut short if there is no one to volunteer. Volunteering as a donor is nowhere as intrusive as it once was. It’s relatively easy, in fact. All you have to do is go to bethematch.org and follow the prompts. Someone’s life depends on it… Someone you might even know.

 

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