HBO GO

If you're an avid reader of my blog (mom), then you may recall that this past spring, the family took a trip to the North Carolina outer banks.  The weather that week was cold and, for the most part, overcast. However, there was a day when the sun came out, the temperature warmed up, and we all went horseback riding on the beach. Normally, when it's really hot and sunny, I'm hyper-vigilant about having sun protection for my neck. It already has some nasty radiation burns, and I don't need sun burns on top of that. So, I usually smear on the sunscreen and maybe wrap a silk scarf around my neck (fashionable!). But, the weather was still chilly, and I wasn't entirely certain the sun was going to peak out that day. So, I had a sweatshirt on, which I later took off, and my neck was totally exposed above my T-shirt. The sun was beating down on my neck for over an hour, yet I didn't even think about covering up because it was windy and still a little chilly. Who thinks about sunburn when it's cold out?? You know...other than people with common sense.

We got back to our rental house, and I immediately knew I was in trouble when I spied the enormous blister on my neck. I took my shirt off and the blister popped after barely brushing against the shirt's fabric. This disgusting sunburn left me with an open wound that I am STILL dealing with today. Even a scratch in this area takes forever to heal because everything around my left shoulder and neck is compromised. When I hiked up in Maryland last year for Team R4V, I wore a backpack and the strap on my left shoulder rubbed against my neck so much that I was dealing with the resultant wound for months.

I go to a wound care clinic at the University of Tennessee Medical Center. They treat a variety of injuries there, but severe radiation burns are infrequent. So, I don't have a great deal of confidence in my care. For the most part, my doctor scrapes away the dead tissue from the edge of my wound until it bleeds, then tries various salves and bandages to see which combination has a positive effect on the injury. Here's a picture of my wound in September when they were trying one bandage that looks like a piece of paper towel, but would actually cost my insurance company a couple hundred bucks:

You like my ink?

And here's the wound today after I took my monthly shower:

I lied before. I take bi-monthly showers.

In my opinion, the wound looks about the same, if not slightly larger, than it did way back in March--it definitely looks just as gross. This is extremely annoying for myriad reasons. I can't swim because I don't want it infected (no pool time for me this past summer). The injury sometimes bleeds a crapload--although this never leads to healthy coagulation/new skin growth. Other times it just oozes yelowish pus. I have no feeling in that area, which is nice in a way because I don't feel pain, but I can also can never tell how it's doing. Is it bleeding today? Draining some other fluid? What color is the fluid? Does it smell funny? Did an axe-murderer just chop a chunk out of my shoulder? I wouldn't know, and it's in a awkward area that's hard to see in the mirror and nearly impossible to keep any sort of bandage on the curve of my neck long-term. The worst indignity is that I have to go to the wound care clinic once a week where the good doctor often keeps me waiting in a cold room, shirtless, for at least an hour before she graces me with her presence.

This thing has gone on so long that we finally decided to try hyperbaric oxygen (HBO) therapy. HBO involves sitting or laying in a pressurized chamber that is filled with an abundance of oxygen (the equivalent of one atmosphere of extra oxygen). You stay in the chamber for about 90 minutes and the added oxygen aids the healing process. I've done this a few times before (okay, I've done it about 80 times before) in Colorado and Texas when my oral surgeons were trying to heal my jaw bone from radiation damage.

These are the four chambers at UT. We each get our own TV

Amusing sidenote: the 15 HBO dives I did in Texas were in a walk-in chamber that was originally used during the construction of the Panama Canal. You can use HBO to cure divers who get the 'bends' from coming up to the surface too quickly. What I'm saying is, the chamber was more than a century old. One of the guys I was in the Texas chamber with got bitten by a brown recluse spider and lost half of his foot, but he was seeing amazing results from doing HBO.

I my case, however, HBO didn't do much for my jaw that I could see. I was hopeful that this round of HBO in Tennessee would yield better results because my neck/shoulder wound is a different type of injury than radiation damage to my jaw bone.

The University of Tennessee doesn't have a big walk-in chamber. Like the hospital in Colorado where I got treatment, UT has these glass 'coffin' looking tubes that you lie down in. You're not allowed to bring anything in the chamber because there's a huge risk of fires in the highly oxygenated environment. So, I couldn't do what I'd really prefer to do for 90 minutes: read a book. Instead, I had to choose from crappy, mid-day programs on basic cable or I could watch a DVD. I usually chose the DVD, so I can give you a run-down on most of the recent movies available to rent (Pixels really sucks). I'm even man enough to admit that I watched The Fault in Our Stars one day, and I may have had something in my eye toward the end of the film.

Not so cool for 90 minutes if you're claustrophobic

So, yeah, HBO sucked a whole lot of time out of my day and involved a lot of boring TV. I've just finished 40 dives, and I'm not sure if it was beneficial. We're leaving for Germany in a few days. I'll see if anything about my wound improves while we're away or if I need to look around for a different wound care clinic when I get home.

Syringe holder update

I did a post a few months ago about my homemade feeding tube holder. I converted it from a cheap clamp lamp I got at Lowe's, so I don't need to hold my syringe while I eat and I can do everything one-handed.

My friend, Jesse Jones, recently told me about another syringe holder that's been around for a while, the Jackson PEG Stand (http://www.jacksonpegtubestands.com).  I was initially put off by the price of this syringe holder ($250!!!!). I wrote to the company and asked if it was made of titanium, but they never responded.  Despite the cost, I really had to get this syringe holder. The one I have, and the Jofas Clamp, need to connect to a table or some other surface that's not too wide, but not too flimsy. The beauty of the Jackson Stand is that you don't need to be tethered to a table. You just put the stand between your legs and sit on the base.

See their handy promotional video

This allows me to eat independently in places I wouldn't normally be able to eat, like on a bench or out in the woods camping, or sitting at my gate at the airport, or at our Crossfit Christmas chili cookoff last night:

Unfortunately can't blame the stand for allowing me to drink too much beer last night

So now I don't need to worry about the width of my table when I go out to eat. The Jackson PEG Stand is a game-changer for me and I highly recommend it if you have the means (that's a big "if," I know).