Sunday, November 13, 2016

Armageddon

A while back, I read an article about the importance of Legacy Letters (also called Ethical Wills), which are written, or recorded sentiments left to loved ones before you die. It is an often repeated sentiment that people at the end of their life regret not expressing some of their hopes, dreams, and life lessons to their family. I got to thinking about this and decided to write letters to Betsy and Grace before my arm amputation surgery. I had personal thoughts, specifically for Grace, about my life, religious views, and hopes for her future, and I felt that a letter would be something she would cherish later in life. Plus, I just wanted to express how proud I am of her. I think this is something all of us should do--it's almost as important as a regular will. The mistake I made was not telling Betsy I was planning on writing these letters before my surgery.

I always fear the worst before these complex procedures, but I didn't want to make Betsy--definitely not my 9 year-old either--worry that I thought I might not wake up. So, I wrote these letters in a rush, late one night, and stuffed them in our locked box where Betsy would eventually run across them after I died. But, as you may have guessed from reading this, I didn't kick the bucket. I also never took those letters out of the locked box, so Betsy came up to me with a rather distressed, tearful expression the other day, extremely pissed off that I would write these letters without saying anything to her about it. I guess what I'm saying here is, strongly consider crafting an Ethical Will even when you're completely healthy. Also, don't hide its existence from your significant other.

So, anyway, the arm is amputated.

Yay!!!!

Yay????

Yay!!!!!


Rocking the Kylo Ren quilt I got from my mother-in-law!!


They ended up taking the arm, 3 ribs, most of the clavicle and scapula. My thoracic surgeon said the bones were the consistency of mush because of the bone infection, but they cleared all that out down to healthy bone tissue. The plastic surgeon flipped up my left arm muscle to cover the wound, so I didn't need a muscle flap from any other part of my body.



Doesn't this remind you of Marty's family photo in Back to the Future,
where parts of his siblings start disappearing?

I got the last of the staples out a couple weeks ago, and the wound seems to have completely healed. Also, finished up a final, six-week course of antibiotics, and so far there is no recurring infection.


Now it looks like I have no arms. Just a tube.

Still adjusting to life with one limb.

Pluses: I use half as much deodorant (I've already saved hundreds of dollars!!!!), my nail trimming time has been reduced by 25% (did I do the math right?), when someone says, "Gimme five!!!" I'm saved from that awkward pause wondering, Which five do they want???? Left??? Right??? Left??? Now I can confidently slap away! Plus all those amputee jokes I've been avoiding because I was afraid of offending anyone are fair game!! Yep, I converted to amputee-ism strictly for the jokes (Seinfeld reference)!

Minuses: My left arm still hurts. I know, there's nothing there so it shouldn't hurt, but I have the same burning/tingling pain as before. Actually, now it's worse. I get these awful pains in my left, imaginary hand like nail-under-the-fingernails-bad every once in a while and I have no control over it. It's like the limb isn't gone at all because I can feel it right now. I have to feel over there to know it's really gone. I'm told this phantom pain will go away over time--hopefully soon.

I can't control my body temperature as well. My right side can't feel temperature, so it rarely sweats. My body compensates by sweating much more on the left side. For some reason this was always much more pronounced in my arms than in my legs. During the winter, the weather gets so dry that my right fingers tips all start cracking and bleeding. Whatever the season, my left arm was almost always covered in a clammy sheen of sweat. With that arm gone, it's like I'm either too hot or too cold all the time. I can't seem to bring my body's temperature to a comfortable level as easily. Especially when I'm sleeping. I wake up roasting under the blankets, then after I get back from walking down the hall I'm shivering. It's hard to explain, but I haven't had a decent night of sleep in a while.

I'm hoping that this is still part of the adjustment and these discomforts fade with time.


From the back it looks like Frankenstein...sorry, I mean Frankenstein's monster

Another bonus to losing the arm has been getting to meet other inspiring amputees like Californian try-lateral amputee Cameron Clapp. He lost both legs and an arm after getting hit by a train when he was 15. Now he travels around the country giving motivational talks about dealing with this tremendous setback. He runs and swims (even surfs!) despite his missing limbs. He has completed triathlons and even made appearances in episodes of a couple TV shows (My Name is Earl and Workaholics). Since we met him, I've already started looking into getting my own prosthetic.



Soon, I'll have my own hook hand!


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!!

Sunday, June 26, 2016

I changed my feeding tube like a champion and you can too!

I changed my feeding tube by myself!!!

Actually, Betsy did most of the work, but I'm taking the credit because that's what kind of man I am.

I wrote a while back that I normally get my tube changed by my GI, Dr. Spaceman, or, as he prefers, "Dr. O'Connor." So, last year, I found myself lying on his exam table trying to think happy thoughts as he casually ripped a tube with a disgusting glob of partly digested food on the end out of my stomach. While we examined the old tube with a mixture of revulsion and scientific curiosity, Spaceman exclaimed, "You know, you could do this at home if you want."

Whaaaaaaaa?!?!? Yes, as it turns out, I have a G-tube with a tiny water balloon inside my stomach, holding the tube in place. Changing the tube is as simple as deflating the old balloon, or 'Old Bag,' as I affectionately call her, gently pulling out the offending tube, inserting the new tube in the tight, moist stoma (nothing sexual about that step), and inflating the young, hip new balloon, or 'Pretty Young Thing,' as I've dubbed her.

I'm sure you have questions like:

"How did you do it?"

"Is this something I can do alone?"

"Is this lump on my left butt cheek serious?"

Well, to answer your questions, a) I'll tell you; b) If you have a balloon tube, YES; and c) You should probably get that checked out.

Let's take this step by step:

Prepare a sanitary space for the operation

It helps if you haven't showered in weeks

This is our bedroom.  Betsy washed the sheets only a few moons ago and our fat, flea-ridden dog hasn't drooled on my side in a couple days, so it's about as sanitary as it gets around here.


Note the clean washcloth for catching stomach contents 


See how happy we look before the pain and horror?


Ensure your replacement feeding tube is a suitable diameter and has a working balloon.

Dr. Spaceman gives us replacement tubes whenever we ask. He's cool like that. Other people find it beneficial to get their own tubes through a supplier, either because they don't have access to their own Spaceman, or because their insurance company is trying to finish what Darth Vader started. I personally do not have links to feeding tube supplies, but if he hears of any, future Brian will post them here--future Brian is sooooo much better looking than present-day Brian.

It's a good idea to make sure the new tube is the same diameter as the tube in your belly. If it's too thick or too thin, it causes irritation and extra granulation (crusty stuff) around the stoma. It could also cause gastric leakage (stoma puke) at the site. Tube diameter is commonly expressed by the French scale because French men are good at measuring really tiny things. **ZING** Honestly, I've no idea where it gets its name but 1mm equals 3 French (Fr). So, a 9 Fr tube is 3mm; a 12 Fr tube is 4mm; a 15 Fr tube is...you get the idea. You're a mathematical GENIUS!!! Tubes run anywhere from 8 Fr up to 24 Fr. Mine is 18 Fr, which seems plenty big enough for blended food. I can always tell when they put in a slightly larger 20 or 22 Fr tube because it irritates my tube site quite a bit.

Feeding Tube Rainbow


Take the new tube out of the packaging and try pumping up the balloon. The feeding tube has 3 ports. Two of them are for food and medication (and alcohol). The third port is the colorful one on the pictured tubes above. This one is for a separate tube that runs inside the main tube and leads to the balloon. My syringes come with a small luer adapter that allows them to fit the balloon port.


The luer adaptor, or catheter tip, is the blue do-hickey on the end



My own spotlessly clean tube, complete with balloon access port


With the luer adapter in place on your regular syringe, or using a smaller syringe specifically designed to lock into the balloon port, try pushing water into the new balloon until it's fully inflated. All the balloons I've had are 20cc, but I think there are smaller balloons out there. It should say right on the tube. Once you've blown up the balloon, look for signs of leakage. If the balloon is leaking, feel free to squirt the water on your loved ones before you start panicking because you have no extra tubes.

She's pumping up the new balloon and Grace is still learning how to take pictures


Prepare the new tube for insertion.

Once the old tube has been painfully ripped from your gut, the new tube will need to be jammed into place through the nasty, bloody hole so you can continue to do that keg stand you were right in the middle of (has anyone tube fed alcohol while in a handstand? Challenge accepted!!). In order to make the tube penetration as painless as possible, it's a good idea to lube your tube. Dr. Spaceman kindly provides a packet of lubrication for us to use, but I'm told K-Y Jelly will also do the trick. 


Betsy is lubricating the tube and my feet are looking pretty stinky



Note Betsy's latex gloves, which she wears whenever she has to touch me



Deflate the old tube's balloon and gently remove it.

I've been entertaining myself watching YouTube videos of other people demonstrating how to change feeding tubes--I have no life. They always pull out the old tube like it's the easiest thing in the world. Right in the middle of a sentence, the tube slides right out like they're pulling a meat thermometer out of a turkey. In my case, it's rather painful. This crusty gunk slowly builds up around the tube, so even after I fully deflate my balloon, there's still a sizable gob for me to yank out. I like doing this part myself, so there's no surprises. The best way to do it is just not think, and yank the sucker out. Once the tube's removed, Betsy tries to avoid looking at the disgusting glob on the end of my tube so she won't puke all over our sanitary space. Also, we Iike to force our daughter to witness the whole procedure because it's always fun to listen to her screams of disgust as she runs to barf in the toilet.

Grace's photography skills need work, but my balloon is being deflated here


Insert the new tube and inflate the balloon

Once the new tube is well lubricated, insertion is pretty smooth and painless. You should do it as soon as possible because the hole in your stomach will immediately start to heal and close back up (like a pierced ear) if there's no tube in it. So, if the new tube doesn't work out for whatever reason, you'll want to get to the nearest ER before the hole closes up and you have to go through surgery to get a new one placed. If you're in some third-world slum or the middle of the Australian outback, and your new tube is a dud a) this probably isn't the blog for you and b) you're screwed. Wish I could help you out. Maybe try duct tape? It worked for NASA.

With the new tube inserted, slowly inflate the balloon to hold the tube in place. We were told to inflate with distilled water, but we normally just use tap water with no adverse effects. Next time, I'll try inflating with J√§germeister so I get a pleasant surprise when the balloon pops. Don't over inflate because the balloon will burst and you'll have to take a trip to the ER, unless you're a tube feeding virtuoso and you have a second replacement tube. Pro Tip: Even with a burst balloon, leave the new tube inserted on the way to the hospital so the stoma won't close up.

Here's a professionally made video we had Grace shoot while Betsy inserted the new tube. Note the disgusting gob of digestive gunk on the end of the old tube:


Did I hear someone say "Academy Award nominated short film?" Pretty sure I did.


Voilà!!! You just changed your tube like a pro, and now you can do anything! The IKEA bunk bed/desk combo for your daughter that came in 9 boxes? DONE!! The neighbor's kid who broke his femur with part of the bone protuding from the leg and a sucking chest wound? COMPLETELY HEALED!!! Einstein's elusive theory of everything that explains all of life's astrophysical mysteries? PIECE OF CAKE!!! With a new tube, the world is at your feet. Go forth and try not to let your three year-old niece wrench the new feeding tube out while she giggles at your agony.

Distractions

Pain.

Pain, discomfort, and general 'suckitude' have been my constant companions the last few months. 

Actually, I've had tingling, burning pain ever since I began to feel the harmful effects of radiation more than a decade ago. But that pain was manageable. Just take enough neurontin--a drug to dull nerve pain--and I could ignore the pain. Relegate it to the back of my mind. On the pain scale from 1 to 10, it was a 3: always there, but I could live with it, like a tight fitting, old leather shoe. 

But this recent agony is much worse. For the first couple weeks, it was constant aching in my back; sharp pains in my armpit, across my chest; burning down my arm that turns into stabbing pain whenever I tried to lift anything in my right hand. Lately, much of the pain has settled back down to the 'manageable' variety, but the discomfort, crapuation (that's defined as "a situation of crappiness;" I'm making up words left and right), and a dose of depression are still with me.  

How did I get here? I was getting back into Crossfit and looking at getting back to normalcy after the skin cancer surgery I had in January.

I should catch you up on events since my last blog post concerned my decision on whether I should get a skin graft or a skin flap after surgeons cut out the skin cancer on my neck. In the end, I went with Vanderbilt's doctor, and asked him to just put a skin graft (a piece of skin from my thigh) over the wound, rather than the much more complex flap surgery. I figured I could always get the flap surgery down the road if the graft didn't take.

Good news! The graft was successful. The surgeon successfully cut away all of the squamous cell carcinoma and the skin graft took to my neck...for the most part. There were still areas on my neck that hadn't healed; areas that needed wound management. I started going to a different wound care clinic here in Knoxville to, ideally, finish the healing process. I started hyperbaric oxygen, yet again, to hopefully improve blood flow in the area. The wound is now looking better than it's looked in a long time, thanks to this new clinic's ministrations, or the hyperbarics, or both of these. Yea!!!

And yet, the wound is infected. Not with just one bit of nasty bacteria, but two distinct colonies of the little bastards. Pills won't be enough to kill these suckers; I have to do IV antibiotics for weeks. Hyperbarics takes up three hours of my day. Now I have a PIC line--a permanent IV going up my arm and into my chest--so I can spend more of my day getting drugs pumped in my system to kill the infection, and all the fun side effects that come with hardcore antibiotics.

Back in May, the pain was really getting to me. 

I spent more than two weeks mostly bedridden from pain. I complained about it to my wound care doctor and infectious disease doctor enough that they did an MRI of my neck and chest to see if my infection had possibly spread. Happy news (it you're in the pro-bacteria camp), it looks like the infection has spread, at least to my clavicle bone. So, instead of two weeks of IV antibiotics, I'm doing six weeks. 

Not only do I have an infection in my bones, but there is now exposed bone at my wound site and an unexplained hole next to the exposed bone that Betsy has to pack with gauze every day. I swear though, the wound is looking better! There's just a bit of bone sticking out and a fun little hole that I can use to smuggle drugs across the border.

In the meantime, what can I do about the pain? My wound care doctor said a steroid shot to the area could alleviate pain, but that would also give a nice boost to the tiny bacteria monsters I'm trying to get rid of so steroids are a no go. Fortunately I have a drug my brother started me on when I was a kid. It's gotten me through many difficult periods in my life and I've been helplessly  addicted to it. Not a day goes by that I don't crave its soothing effects. Betsy asked me the other day how I'm dealing with this. She's been having a difficult time with the constant doctor visits and a husband who's basically good-for-nothing around the house. She's the one holding the house together. Am I in pain? Am I losing sleep? Am I feeling constant frustration at having to sit on my ass all day (can't exercise with a PIC line). Sure, I'm all these things, but I'm dealing with it. I'm not moaning about it constantly. I'm not screaming, "Why Me?!?" shaking my fist at the sky. 

Books. Books are my drug. Betsy knows about my addiction of course, but doesn't realize how much reading helps me escape. Not just any books either. Fantasy. Science Fiction. Books that give me other worlds beyond this one. I can sink myself so deeply into a good fantasy novel that I'm completely oblivious to the world around me. 

As with any drug, my addiction to books carries risks. I can get so engrossed in Pierce Brown' or James S.A. Corey's action-packed science fiction that I lose track of the good things going on around me. But, for times like these, when I'm tethered to an antibiotic pump all day, books really help me keep my sanity.

If you've no interest in SF/F then read no further. I intend to thoroughly geek out.

What are the latest books that help me forget my pain? I've been enjoying Joe Abercrombie quite a bit. One of the characters in his First Law series, Glokta, is a crippled man who was brutally tortured in a foreign prison, to the point where every moment is pure agony. He's unable to chew food, and walks only by painfully dragging one foot over the ground. Glokta used to be a dashing swordsman, loved by the people, but now they look at him with disgust. Since he was set free from prison, he's taken a job doing something he's uniquely qualified for: torturing  others into giving bogus confessions for his government. I know it sounds like an awful story, but Glokta has a macabre sense of humor that I find hilarious, and somehow reading about his loneliness and various ailments makes me feel better about my own problems. 

Of course, there are many other authors I've been into reading. As a kid, I had Lloyd Alexander, Alexander Key, Terry Brooks, David Eddings, Margaret Weis & Tracy Hickman, R.A. Salvatore, Alan Dean Foster, Raymond E. Feist, Orson Scott Card, Tad Williams, and Robert Jordan. More recently, the authors I've been engrossed in are Scott Lynch, Patrick Rothfuss, George R.R. Martin, Robyn Hobb, Brandon Sanderson, Neil Gaiman, Pierce Brown, James S.A. Corey, Brian McClellan, Brian Staveley, John Scalzi, Andy Weir, and Lev Grossman (in no particular order).

I'm always on the lookout for books with strong female protagonists that I hope Grace will one day read, if she ever gets off her iPod. She's read all of Harry Potter, but it's been hard to get her to enjoy other series without forcing her to do it. I have a hard time reading to her because I get out of breath easily when I read out loud, and it makes me dizzy. I loved Anne McCaffrey's Pern books and can't wait until Grace reads Dragonsong. More recently, there have been excellent series by Samantha Shannon, V.E. Schwab, Leigh Bardugo, and Marie Brennan. Of course, the one thing all these female protagonists have in common is that they're white. N.K. Jemisin and Ann Leckie have really cool books with non-white female leads (in Leckie's case, the protagonist is a spaceship, but she's mostly written as female), yet I'm still looking for fantasy or science fiction with an Asian female protagonist. Any suggestions?

Monday, April 18, 2016

Health Update

Apologies. It's been a while since I posted, so I thought I'd write a short update on my situation with the skin cancer/pending skin graft or skin flap.

The short version is, the skin cancer is completely cut out (yea!) so no need to worry about that anymore. I ended up going with a skin graft, rather than the more invasive skin flap, because I can always get a flap in the future if this doesn't work and I didn't want to end up with a permanent trach after some unforeseen complication with the complex flap surgery. 

So, I'm back to going to wound care every week waiting for this skin graft to finally heal. I'll also be doing more hyperbaric oxygen treatments because the wound currently looks like this:



Sorry if you're in the middle of eating



For a while after the surgery, I was dealing with pain at the site where the doctor took the skin graft on my thigh and unexplained headaches. I've also had a couple upper respiratory infections that required antibiotics, but I'm finally getting back to a sense of normalcy, just in time for warmer temperatures. I've been out to eat a few times, like this trip back to Outback celebrating my mom's 70th birthday:


I know it's awful lighting, but my mom is in the photo and I'm tube feeding. That's all you need to know.



We went to the local air show over the weekend:



That's a Blue Angels FA-18 behind us and, even more impressive, a tan minivan


I went with the in-laws for a hike and picnic in the park on Sunday:


I'm eating a Real Food Blend, naturally


And I coaxed Betsy into finally giving me a ride to the Crossfit gym:


She whined the whole way though


Hope you're all enjoying the hotter weather! Or, if you're reading this from the Southern Hemisphere, I hope you avoid frostbite (my American public school education didn't prepare me to empathize with whatever it is you upside-down people are going through right now).




Sunday, January 24, 2016

Decisions, Decisions

In a funk for the past few days. Why? Because I got diagnosed with Squamous Cell Carcinoma (SCC) at the site where I got radiated and where I’ve been dealing with this wound that hasn’t healed since I got a bad sunburn last March. My wound care doctor says this seems to be a recent occurrence because she took a biopsy of the same area last fall and it wasn’t malignant. But all the ‘what ifs’ have been running through my mind. What if she missed it, and I’ve had SCC much longer? What if it’s already metastasized to other organs in my body? I’ve had to pee much more frequently at night; does that mean it’s spread to my prostate?

SCC is a pretty common type of skin cancer. My grandfather had it more than once. There’re around 700,000 new cases each year in the U.S. (Too much sun exposure and tanning bed time). Normally, in an out-patient procedure, the doctor cuts out the malignancy and you’re done. That’s all my grandfather had to do. Sometimes they add radiation on top of the surgery to make sure they got it all—obviously, I won’t be doing that. In my case, since it’s in an area that has a hard time healing, I’ll probably need a skin graft or a skin flap to cover the wound. The skin flap is where they take muscular tissue from another part of the body and ‘flip it’ up to the wound. The muscular tissue stays connected to blood vessels so there’s a ready blood supply so the skin flap surgery is much longer and more detailed than the skin graft—where they just take a piece of healthy skin from my leg and put it over the wound.

Yesterday, Betsy and I went to Vanderbilt University Hospital in Nashville and talked to an ENT doctor. He said there is a range of options for me. The surgical option with the least risk would be just cutting out the SCC and then letting the area naturally heal. That's what most people do, but in my case I already know from experience that the site likely wouldn't heal. If it did, it would take over a year and I would have to go to wound care and deal with infections the whole time. The next level of surgery, like I said above, would be to cut out the cancer and cover the wound with a skin graft. I've had a couple of grafts there already and they healed up well. Unfortunately, the area the surgeon is talking about cutting is much bigger than those skin grafts. He wants to cut out every bad looking part of skin on my shoulder and neck just to make sure he's gotten every last bit of cancer. So, a simple skin graft would have a hard time adhering to the new site. The ENT was really steering us toward the most aggressive option: the skin flap.

The ENT thought he would be taking muscle tissue from my leg for the flap, then using a vein and artery from my chest to provide blood to the area. The procedure would be long, 6-8 hours, and the ENT would be doing all of it with potential help from a couple other doctors on his team. I would need to stay in the hospital at least 72 hours after the procedure to make sure the flap works. He also talked about potentially giving me a trach for the procedure. This is because there may be swelling in my neck and he didn't want my airway obstructed at all. Getting a trach scares me. I fear losing the ability to speak, but I see why it's a necessity and he will remove it (hopefully) right after surgery.

Today, I had an appointment with a surgical oncologist at the University of Tennessee (UT) medical center in Knoxville. He told us many of the same things as the ENT. While the ENT only focuses on cancers in the head and neck, the surgical oncologist operates on tumors throughout the body. He would work in concert with a plastic surgeon for my procedure. So, he would cut out the SCC, and the plastic surgeon would perform the skin flap. Next week, we meet the plastic surgeon and she will tell us how she plans on doing her portion of the procedure.

So, the decision we have to make is whether to go to Vanderbilt for my surgery (3 hours away in Nashville) or stay here in Knoxville. We liked both doctors. All the nurses are very good and they were more than willing to sit down with us and answer every question we had. I think I'm leaning toward Vanderbilt just because it has a good reputation, and because the ENT specializes in these types of procedures while the surgical oncologist is more of a generalist. Also, I get the impression that if anything goes wrong (horrible infection, too much swelling, bleeding in the brain, and now I'm thinking of awful things that could happen, great) Vanderbilt is better equipped to deal with it. They have all the specialists to stitch me back together. I'm reserving judgement until after we meet with the plastic surgeon.

Now, Betsy says she feels like we're leading these doctors on. The nurse at UT already got me an appointment with the anasteasiologist and set a tentative date for the surgery (March 2). So, in a couple weeks, we'll be calling her to say, "sorry, we're just not that into you." We have to keep in mind that they are being paid a crapload by my insurance to do this and in the end, my life is really a more important consideration that hurt feelings.

Next week, I’m also meeting with my regular oncologist at Thompson Cancer Center. He's a pretty straight-shooter, tell it like it is kinda guy, and he will hopefully have an opinion about Vanderbilt vs. UT. So, second and third opinions. With luck, I’m not missing anything. I worry abut the doctors who assume this is a ‘typical’ case of Squamous Cell Carcinoma. In my experience, my health is anything but ‘typical.' Thankfully, the doctors at UT and Vanberbilt all seem to appreciate the seriousness. They also seem pretty certain that my cancer hasn't spread, but they've ordered CTs and an MRI to make sure.

Now, I just wait for more appointments, CT scans and MRIs. This is the really shitty part about cancer: the waiting. Waiting for test results and waiting for doctor’s appointments. It'll be a month before the surgery. Waiting gives me more time to run through all the ‘what ifs’ in my head until the absolute worst possible outcomes become certainties in my brain.

Waiting…

Waiting…

Sunday, December 13, 2015

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.