The inaugural fundraiser to help the MPN Research Foundation.

Friday, May 5, 2017

Behind the fundraising curtain

First off: I've decided that I should put together posts for the newsfeed here. Until now, I had consciously decided not to do so; I thought that restricting the news feed to changes in rules, prizes, etc., would be enough. However, I think that I'm seeing enough people hit the page that getting more information to them is worthwhile.

Without further ado then: this post will be largely about me, Bob Wanamaker, who I am, what I do, and about how MPNs have affected my life. In short, a bit of biographical background about the man bringing you this fundraiser. I'm also going to try to sneak in a bit of an argument about the nature of identity here, but I think it will be so stealth you won't know it's happening.

I was first diagnosed in July '15 with myelofibrosis, at the intermediate stage. The classification was made as intermediate based on the regular appearance of the constitutional symptoms, a low hemoglobin count - I was admitted with an HGB of 4 - and my genetics; however, I had no blasts, had (pre-admission) never had a transfusion, and so I was clearly intermediate. 

During that first hospital stay, I was in ICU for 3 days; having an HGB of 4 put me at risk of death from any number of things. I had actually gone to the ER because my heart hurt so badly one afternoon after work that I couldn't take the pain any longer. I had been experiencing this pain, at a lower level, for about 4 weeks. 

One question I get frequently is that, as a lecturer on advanced training and injury, with a high degree of self-awareness, how could I have missed that I had cancer? 

I think I get that question more frequently just from myself than the sum of all others, by the way.

On top of the lowered HGB, I experienced the constitutional symptoms the year or two previous; I had, in 2010, done very well competing in strongman. In 2011, I suffered some torn muscles; in retrospect, they painted a picture of oxygen-depleted muscles, old muscles - stringy, tough, unhealthy old muscles - in addition to carrying a lot of pain in my hips and low back. I talked with a specialist about back surgery; I ended up, to avoid the surgery's dangers, visiting a chiropractor for a type of advanced decompression. 

This decompression helped quite a lot. I remember one of the things he told me: normally, as we age, our discs will age as well; they become dried out, depleted of liquid, oxygen, and nutrients. As they become dried out, they no longer function as well as they should. in fact, they lose nearly all function as "shock absorbers". In the case of injury, this drying out occurs acutely and quickly, and also more completely.

There's that concept of tough, old, stringy, dried-out, raising its head again. One of the functions of the decompression was to reverse this aging of the disc. To that end, it was 8 weeks of drinking a lot of water and watching some key nutritional concepts.

I also suffer from another chronic and sometime terminal disease called diffuse idiopathic skeletal hyperostosis, or DISH. The hallmark of DISH is that all connective tissue turns to bone. As this happens, mobility and range of motion are impacted greatly. In my case, not only are my shoulder blades frozen in an internally rotated position, but a lot of the issues I was fighting at L4-L5-S1 were the result of bone formation on the spine causing nerve impingements; in fact, the nerve impingements were so bad that every doctor I saw was curious as to how I could walk at all, let alone compete.

Additionally, I was anemic - terribly anemic. So I had that going for the muscle tissue as well. Essentially, my blood iron measured zero for years.

Between these nerve impingements, prematurely aging muscle, anermia which caused poor performance, recovery, and injury - there was so much to notice that when I started to experience severe fatigue, I was thankful it was an easy symptom to deal with.

So much was wrong, so little was right during those early years, those pre-diagnosis years. I attributed the fatigue and other indicators to simple stress:  I was under a great deal of stress from career, marriage, and other sources that this seemed reasonable, so I just pushed forward as best I could.

I flew to Australia for a photo shoot. I slept 18 hours on the flight; nobody had done that before, apparently. Things like this were commonplace to me. I was exhausted, completely and utterly, all the time. I thought "This stress is a killer." Never once did it cross my mind that I had cancer.

In any event, by the spring of 2015, I knew something more was wrong, and by July I was in an ICU fighting for my life.

One of the things that has happened to me, with which I am intimately familiar is loss. Rather than placing on a timeline, I will simply refer to key events. I lost the ability to train heavy and compete - my big outlet as a strongman is gone. I lost all my money: in between work being harder to find, having to pay cash for treatment of the DISH because there is no recognized treatment, and that taking a couple hundred thousand since my diagnosis in May 2006 my money is gone. I've lost my truck; I can't drive anyhow, since I randomly fall asleep. 

More recently, I've lost my job, my career; I now sit around at home all day (and night - there are so many nights that I am afraid to fall asleep because I am afraid to wake up to more loss): well, I try not to sit around, I've taken over housecleaning duties in an attempt to not only be useful but to feel useful and take some pride in some work, as an example. 

I was hospitalized, placed in a coma & intubated in March 2016 when I suffered from burst varices due to advanced stage liver disease and portal vein hypertension caused by a massively swollen spleen. I nearly died that time; apparently the doctors did not believe I would come out of the coma.

However, I did come out, and then spent until November recovering. In November, feeling somewhat recovered, but reeling from the loss of so many pieces of my identity, I was hitting bottom. I decided that I had to embrace something in order to start building a sense of identity. 

As I looked backwards over my life, I was cleaning the gunk off a knife that I had purchased in 1975, and that I had left at my father's house. He had used that knife for household chores until he died in 2004, at which time I brought that knife - the single thing left to me by my parents - to my house. As I was holding the knife, my mind drifted to other places and times.

I knew then, and never doubted my knowledge, that I had to rediscover my identity by getting back into knives. That's what led me to purchase some knives. From there, as I recovered even more, and felt more and more certain about my identity, I thought that I should hold a fundraiser, and that it should revolve around knives.

And here we are.

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