Thursday, September 1, 2016

Disarmament


My arm is getting amputated next Wednesday, along with my clavicle and a few ribs.


This is how I'll say I lost it


I'm still trying to process this and it likely won't really become "real" until the arm is gone. If you've been reading my posts, then you'll know that I got a bad sunburn in March of last year. It blistered up and never fully healed. Then, this past January, my wound Doctor did a biopsy and found skin cancer. The skin cancer was removed and a graft was placed over the wound, but the graft didn't really take because that area of my skin has such poor blood flow. So, I've been dealing with the wound since the surgery in February. I've been doing daily hyperbaric treatments, and Betsy religiously changes my dressing every day, but the wound got infected and now there is some bone exposed and a nifty little hole right next to the bone. Since the exposed bone has shown no signs of healing, I will continue to get infections there whenever I'm off antibiotics. Furthermore, the infections have moved into my clavicle bone and likely a few ribs (not sure if the ribs are infected, or dead because of radiation damage, but it amounts to the same thing). 

With an ongoing bone infection that will continue because of radiation damage to my shoulder, the doctors at Vanderbilt recommend that I get the offending bones removed. Why the arm? My arm is in constant pain (not severe pain, but it's always there) because of nerve damage to my shoulder and because my shoulder doesn't have the musculature to hold the arm bone up. So, it's partially out of joint, a condition called subluxation. If my clavicle is removed, then the arm will lose even more support and would hang down even further out of joint. This would increase my pain and decrease my quality of life. Since I don't use the arm much anyway, it would be better if I just get the arm removed. I got a second opinion at Emory University Hospital in Atlanta a couple weeks ago, and the doctor there concurred with Vanderbilt that my arm will need to be removed. Even if they don't take the arm off and my pain doesn't immediately increase, I'll be set up for further problems down the road. Better to be aggressive and amputate now. 

My life since radiation has been this slow deterioration of my body. I remember freaking out because I couldn't open my jaw as far as I used to be able to, then panicking at the ringing in my ears. Then, my right foot couldn't feel when I stepped into an icy creek and I thought it was the end of the world. Then I had this crazy nerve pain in my feet where it felt like my toenails were being pulled out. Then the paralysis started and I couldn't type at work as fast, couldn't run as fast. Then couldn't type or run at all. Lost dexterity to tie my shoes then couldn't lift my left arm to drive. Then I couldn't eat solids; then I couldn't swallow. Now, I contemplate the loss of my arm and fondly remember the days when not being able to fully open my mouth was a big deal.

Settle down, ladies...he's taken

The problem with my radiation damage is that it is this insidious progression where each little diminishment of my abilities is "bad, but not too bad," because it's really not much different from the way I was a week ago. Getting my arm amputated sounds like a horrible thing to you, but from my standpoint, how different is it really from the way I am now? I already can't use that arm. I have to constantly lift or adjust it with my right hand so it's not flopping around too much. I have very little feeling in it, other than burning nerve pain. So what's the big deal? I'm basically one-armed already. I feel like one of those 90 year-old guys you meet at a rest home who laments the vigor of his youth. But I'm 41, so it's happened a little sooner than it was supposed to. This is just one more thing I'll have to deal with and move on, hopefully with a long break before the next thing; preferably after Grace graduates high school.

But still...losing an arm...losing a limb...that's kind of a big deal. I can't really wrap my head around it yet, and I don't think it'll really hit me until after. Isn't there a song lyric along those lines? "Don't know what you've got til it's gone." That's been the way I am through all this. I could always skate through military fitness tests without working out. I did a 20 minute 5k as a casual runner. Push-ups, pull-ups, no sweat. I didn't have to work for anything, train for anything. Then I woke up and that stuff wasn't so easy, then it was impossible. So, yeah, losing my arm is not such a traumatic thing because I can't yet appreciate how fucking shitty it'll be to have one arm. 




I cringe at the sight of my body, but we had to get some "before" shots

I guess the main thing I'm worried about right now is the surgery itself. It sounds like it'll be a long surgery with at least three different surgeons working on me: orthopedic to take the clavicle, shoulder and arm; thoracic to take the ribs; and plastic to sew everything up. My surgery in 2009 to try to fix my radiation-damaged jaw required two surgeons and that was about the worst surgery I can recall (though at 7 hours, it wasn't as long as a 12 hour surgery I had in Texas). I woke up from surgery in 2009 unable to swallow, with a bar where my jaw bone should be. I'm worried about waking up from surgery this time much worse than expected due to some unforeseen complication. I'm dreading how long it will take to recover from such a long surgery. It wasn't so long ago I was proud about my progress at Crossfit and my brother-in-law got me into a Crossfit coaches course. But, then I had to cancel the course and who knows when I'll get back to doing workouts? It's just frustrating to take a step forward, then have my fragile health force me back two steps. I'm nothing if not stupidly stubborn though, so I'm sure I'll get back to hiking, snowboarding, and Crossfit after this upcoming hospital stay!! Also, on the bright side, only having one arm enables me to get out of even more chores around the house!!

6 comments:

  1. God Bless you and your family, I am so sorry for the ordeals that
    you endure, You have a great spirit and that alone empowers all of us.
    Thank you Brian

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  2. Brian, you truly are an inspiration to me. You attitude is one wish I could have. I have never met such a positive,, move forward type of person till I met you. You will be back on the streets, slopes and gym in no time!

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  3. Brian, I believe you were put on this earth to inspire the rest of us and show us how easy we've got it. I am praying my heart out for you, and wish there was more I could do. Please let me know if I can help in any way, and thank you again for your shining example to the rest of us.

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  4. Wow Brian, sorry you are having to face yet another challenge. I hope all your worries about the surgery turn out to be baseless and you have the smoothest recovery possible. We're all out here rooting for you and waiting to hear how it's going.

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  5. Keep up the great perspective, Brian (and Betsy, and Grace). I can't imagine how difficult and unpredictable every day, month, and year is. I'm praying for peace through it all. It also renews my drive to fund research for cancer prevention and treatments that do NOT include horrible side effects, like radiation does. And please don't "cringe at the sight" of your body. While it may be different than it used to be, you are *truly* hard-core. It's tough to capture resilience, spirit, and sense of humor in a photograph, but that's certainly what seems to shine brightest in you. I hope surgery is going smoothly, and that you're back in action ASAP. Thinking of you.

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  6. Morning Brian. I can easily relate and fully sympathize with your daily struggles with what sounds like Osteoradionecrosis with superimposed Osteomyelitis.
    Having a very similar issue myself I found Hyperbaric Oxygen therapy after 29 sessions seemingly made little to no difference in my wound healing. I continue on twice daily antibiotics going on 5 years. Like you I easily identify with the impact and loss of a very vigorous exercise life style as a complication of radiation and non-healing wounds with Osteoradionecrosis/Osteomyelitis.
    To say I wish you the best would be a gross understatement but my heart truly goes out to you.

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