The inaugural fundraiser to help the MPN Research Foundation.

Thursday, May 11, 2017

Mentioned by The MPN Research Foundation

We were mentioned in the 5/10 MPN Foundation Newsletter (Page 2)!

It's always nice to see our efforts recognized. I know that everybody at the Foundation is just swamped with work, and I'm honored that they would take the time to make note of us.

Friday, May 5, 2017

Reasons, Justifications, Excuses, and Hopes from the other side of the fault line

I feel that I must apologize for the last entry made. I found myself distracted by other tasks, shiny things, illusory greener grass - all the normal distractions I must better learn to push away in the hope that I might stay better focused on where I am.

Why do I feel that I must apologize?

Well, first and foremost, I feel that way about everything. My first, strongest impulse about anything is to apologize for it. This is, I believe, driven by the fact that it is my failt. My fault -> I must apologize for it.

Everything is my fault. So, I must apologize for everything.

Why is everything my fault? Think about this: I have cancer. By any sane standard, this is not a good thing. It is, therefore, a bad thing.

Nothing exists in this universe without being determined to fit in, somehow. Unless you believe that we are confronted with a mass chaos of disordered confusion every moment, whcih hardly seems likely. Rather, it would seem to be more accurate to subscribe to the fact that everything is determined.

So, somehow, it was determined that I would have this cancer that will (most likely) cause me great suffering and pain before it kills me; but kill me it will. My body and my mind are broken by the cancer. It is a cancer that is terminal; the only cure, a stem cell transplant, has a high failure rate; I do not qualify (nor do I want) this treatment for a variety of reasons.

The bottom line, then: I have a terminal cancer. When I was first diagnosed, I was give statistical odds of living another 2-3 years, based upon my overall health, my genetics, and the intensity of the disease.

That was at the end of July, 2015. 

Hello, sunshine. It was good to see you. I'll be passing by any day now, I trust I haven't abused you too badly. 

This determination to give me something: I was given something that is not good. So, I was given something bad.

You might look upon this as an active punishment for something I did. You might instead feel that it is more just bad luck. Whatever you call it, however you feel about it, the fact remains: it has been determined that my role in the ordered universe is to get the snot beaten out of me by disease. I am going to be put through the wringer a few times before my death.

Goodbye, snot. I think that the beating is almost over, and that you have been washed down various holes that I have encountered in this tour.

Whether you believe in a supreme being (I do not) or simply a well-ordered universe, I am being punished by something. I am being made to suffer. 

[On a side note: whoever is doing this, you are doing a fine job. My kudos to your handiwork.]

I am being punished, I hope, for a reason. This reason could be any action I took, or any period of inaction in which I did nothing.

In any event, I had best apologize in case this is the thing I did which was my fault.

I'm sorry. That's just the way it is with this cancer. Everything about me is broken. I'm going to die from this cancer; whether directly from the cancer itself, or as I almost did a year ago, from the organic damage caused as a mere side effect, a mere symptom, of the cancer.

I apologize quite frequently these days. I'm sorry for that, too.  It is as though I have crossed a line, a fault line if you like, and fault, flaws, and apologies mean something different to me now than they did before I stepped over that line.

I know, I know. None of this is my fault. None of this can be viewed as punishment. I am not being punished; sometimes, bad things just happen to good people.

I'm sorry, then, that I've offended you.

I'll shut my stupid pie-hole now.

Note: I hope that I've conveyed one large point in this entry, namely that this cancer (and most likely other terminal cancers) put the patient into an apologetic, blameful, and depressed mode. The patient finds him or herself taking blame, apologizing frequently and freely, and hating their body and mind.  I will expand on this in the next entry.

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.