Tuesday, March 21, 2017

I did a blog! (Not here though)

Hello,
I thought you should know, if you don't follow me on facebook, I did a blog post about my trip to Germany in December 2015. It's actually a guest post on the tubechic.com blog site (here's the link: http://tubechic.com/the-traveling-tubie-aka-the-tube-dude-has-this-weeks-post/). 

If you've never heard of the tubechic blog, you should check it out. The tubechic, AKA Diane Massey Stormer, is a fellow adult tubie and she is building a very informative website about all things tube related. One project she's working on is making adult clothing that incorporates ports for tube feeding. This would be huge. Women, especially, are restricted with the way they dress in order to eat during the day. I really admire Diane for the amount of time she's investing in making tube feeders' lives better.

That's all I wanted to say. I'm working on a blog post that has nothing to do with tube feeding. It's about my grandfather, who passed away at the end of February. It's been very hard for me to write because he was such a huge presence in my life, and I don't know how to express this loss. Still processing it, I guess. In the meantime, here's a nice obituary from the New York Times: https://www.nytimes.com/2017/02/28/us/william-liebenow-pt-boat-skipper-rescued-jfk.html?_r=0

Thursday, January 12, 2017

Disney, Take 2

2016 was a pretty sucky year for me personally, but I have high hopes for 2017. So far, it hasn't let me down with a trip to Orlando and a chance to see my mom, uncle, sister, brother-in-law, and my two nephews. 

We're in front of the Tree of Life at Animal Kingdom which, ironically, is not alive


My uncle Larry told my sister, mom, and I that if we could pay for airfare to Orlando, he would pay for all of us to stay at Disney's Polynesian Resort along with meal plans and 4 days of park tickets. For this reason, my mother-in-law would like to adopt my uncle Larry into Betsy's side of the family, preferably before summer break.

I wear that hat every day



So, we got to go to Disney World AGAIN after having gone a couple years ago. How lucky could we be?? I'm worried Grace will start thinking these sorts of trips and luxury resort stays are commonplace, so we've started forcing her to sleep in the cupboard under the stairs. That reminds me, Betsy and I decided to fly down to Florida a couple days early so we could spend a day at Universal Studios' The Wizarding World of Harry Potter. Grace and I have been dying to see it, so we spent two nights at the Cabana Bay Beach Resort and visited the park on New Year's Eve.

The Cabana Bay was a great place to stay, other than the constant annoying 50s music. It's cheaper than the other hotels at the park. I ate most of my meals at their cafeteria. I could just order a meal, put it in my blender, find an outlet near our table, and blend up my food right there. I had two breakfasts and a dinner this way.


Grace is making her just-finish-eating-so-we-can-go-to-the-park face


On New Year's Eve, we ate at Jimmy Buffett's Margaritaville where I ordered a chicken Cobb salad. I could've ordered a burger with gluten-free bun, but I'm always afraid to order stuff like bread, potatoes, rice, or pasta because it thickens the blend, and the volume of the meal turns out really big. I'm also afraid to get steak because the Vitamix often misses fat or gristle that ends up getting stuck in the tube. So, I usually opt for salad or seafood. 

"If they play 'Margaritaville' one more time, I will murder someone."

We spent a day at Diagon Alley--which was AMAZING. It took us a while to convince Grace to ride the Escape From Gringott's ride, but she liked it so much, she had to ride two more times. Betsy and Grace had lunch at the Leaky Cauldron and I had a couple Real Food Blends. Grace tried her hardest to stay up until midnight to ring in the New Year, but only made it to 11:30.

Fun fact: Butterbeer is 15% butter by volume


I have the Dumbledore wand, Grace has Hermione's

Just a muggle eating his Real Food Blend and his half-blood princess

The next day, my uncle picked us up at Universal and drove us over to Shades of Green military resort, across the street from Disney World's Polynesian resort. After checking in, we ate dinner at the Italian restaurant there, where I had the veal piccata (I know this breaks my 'salad or seafood' rule, but I figured veal was a safe bet).  

Hi, Uncle Larry! He doesn't use the internet so I doubt he'll ever read this.

My sister, her family, and my mom flew in from Germany that evening and we spent one night at Shades of Green, before moving over to the Polynesian the next day. They served gluten-free waffles at the Polynesian's Capt. Cook's so I had breakfast there before we headed out to Animal Kingdom. I think last time we went to Disney, I said Animal Kingdom is like a really crowded zoo. I still think that's an accurate assessment. Pretty much all the animals I saw are also at Knoxville's zoo and I don't have to fight a mob of people to see them. However, I also still think Everest is the best roller coaster in the park. Grace and the other kids were too afraid to ride, but my brother-in-law, Betsy and I rode it. We all rode the Kali River Rapids twice too. Grace loves that one and at 80 degrees, we were all hot enough to go. Once again, I had a Real Food Blend for lunch in the park.

You do a bunch of walking at the Disney parks. I didn't do a whole lot of exercising last year, especially after my surgery, so I was worried I'd have a hard time keeping up with everyone. But, I did pretty well. My iphone tracks my steps and the distance I've walked every day. I don't know how precise it is, but according to the Health app, from Friday, Dec. 30, to Friday, Jan. 6, I walked 107,452 steps for a total of 38.6 miles. I know it's not that impressive, but I felt good about not needing a cane and still being able to hang out with the kids without any falls.

That first night at Disney, I had dinner over at the Contemporary Resort at a restaurant called The Wave. I got chicken breasts and had a horrible time with clogs. Has anyone else blended their meals in one of the wider pitchers that come with the commercial Vitamix? If so, please reply in the comments. Our chef at The Wave was super nice. He offered to blend my meal up in their own Vitamix so I wouldn't have to get my own dirty. But, as soon as I tried to push the food in, I got a clog. We sent the blend back and asked him to blend some more. This happens sometimes, but it always gets fixed after we send it back. But my tube STILL clogged. So, we sent it back again...clog...and again...clog. Finally, we asked the chef (Betsy thought he was really hot; is that why she kept asking to see him?) if he could blend the meal in my pitcher and it worked the first time. We think that the narrower pitchers condense the food up better as it blends to ensure every little bit gets liquified. Does that make sense? Anyone else have this experience? Regardless, from then on, we always asked the chefs if they were blending my meal up in a Vitamix with a narrow pitcher.

Disney, of course, will bend over backward to make sure their guests get the full, 'Happiest Place on Earth' experience. We ate at Magic Kingdom's Crystal Palace for lunch on Tuesday (thank you, chef Ruben!), Hollywood Studios' Sci-fi Dine-in Theater for lunch on Wednesday, and Epcot's Coral Reef Restaurant on Thursday (thank you, Chef Nathan!) and every time, the restaurant used their own Vitamix (with a narrow pitcher) so I didn't have to carry mine around the park. The one exception was the luau at the Polynesian on Thursday night (very impressive fire dancer!). They didn't have a Vitamix, but I didn't mind eating a couple Real Food Blends for dinner.

Chef Ruben is not at all concerned about his restaurant's rodent problem

I had honey in my meal and this bear wouldn't leave me alone!

My youngest nephew loves watching me eat and now Betsy wants to kidnap him

Chef Nathan at the Coral Reef

My Uncle Larry got us a meal plan for the week. Not sure where he got all the money for this but I have heard him mention that Walter White is loosely based on him? Don't know what that means, but thank you, Uncle Larry!! My nephews have celiac disease so both my sister and I ordered gluten free meals for breakfast every morning (gluten free waffles, eggs and bacon for me!). I just plugged up my Vitamix in the breakfast area where all the guests ate, blended my meal, and ate with whoever happened to be up.

It was awesome to see Grace together with her cousins. They get along really well and had a fantastic time at the parks. When we went to Disney two years ago, The Force Awakens hadn't come out in theaters yet, so there wasn't a whole lot of Star Wars stuff. This time, at Hollywood Studios, it was EVERYWHERE. There were storm troopers walking around asking little kids for their identification. Grace and her cousins did Jedi training, where they faced off against Darth Vader AND Kylo Ren (not at the same time; that would be suicide). There was a storm trooper march with Captain Phasma leading a squadron of troops up the street to their shuttle. There was a live show outside. There were a couple short films to watch in two different theaters. We waited in line to meet Chewbacca (we all hugged him and said we were sorry for his loss). We could've waited to meet Kylo Ren, but who wants to meet that asshole? And, naturally, we were encouraged to buy Star Wars merchandise. Uncle Larry gave us money to spend on souvenirs so the kids each got a remote control BB8 droid. I got a Lego Tie Fighter (because I'm 42, and I like Legos), then got home to discover I got a MODEL of a Tie Fighter, not the Lego. Models are way too grown up for me, so I'm going to return that sucker and get the toy I wanted (again, I'm 42).


Sorry kids, but you don't get to meet the wookie until I'm finished


Grace said she wished he would've tried harder, so next time, could you use a real light saber, you pansy?


Love these kids


"OH MY GOD, GET THIS *#!@*&#$ THING OFF MY HAND!!!! KILL IT!!! KILL IT!!!"




Grace had more sugar on this trip than she's ever had in her life


Since there was a forecast for snow back in Tennessee, I naturally went swimming every chance I got. I've heard some people don't go swimming with their feeding tubes, especially not in hot tubs, oceans, lakes, or rivers. I know parents, especially, are nervous about letting their tubie children expose themselves to potential toxins. I haven't let the tube stop me from swimming. I might be playing with fire but I've had the tube in all those environments, plus public swimming pools. I normally try to take a shower right afterward to rinse out the tube, but I haven't always. I remember one time, specifically, a couple years ago when we went camping and tubing in the Smoky Mountains and it was two nights before I took a shower. I'm definitely not encouraging others to do this. I know parents are very nervous about being responsible for their children getting bad germs through the tube. I personally haven't had a problem with it, and this trip was no exception. I went swimming in the saltwater pool, the saltwater hot tub, the chlorinated pool filled with screaming kids, and the chlorinated hot tub. At some point in the future, you can all laugh at me when I get some horrible stomach illness from mutant lake algae.

Betsy and I renewed our wedding vows for the 15th time. Our anniversary isn't until Feb. 2, but we thought we would take the opportunity to get married at Disney World. Initially, we wanted to do it in front of the Chinese Pavilion at Epcot's World Showcase, but we ran out of time on Thursday (it would probably take a week to see everything at Epcot) so Grace had us say our vows on the beach at the Polynesian and then Betsy and I went to Magic Kingdom Thursday night to see the fireworks. You want to know what attracts a lot of attention? A one-armed guy in uniform and his wife wearing her wedding dress posing for pictures in front of the crystal palace at night. Whoa. The photographer had us kiss and the whole crowd erupted in cheers. I'm a little disappointed we couldn't do it in China. I guess now we'll have to go to the REAL China to renew our wedding vows. Maybe Uncle Larry has some money left to spend on those tickets? The Shanghai Disney Resort just opened last year!!! I'm sure that won't be crowded at all.

Happy Anniversary, Babe. Here's to 15 more!


Monday, December 12, 2016

Rest in Peace

A friend from high school died the other day. It hit me hard because he died of metastatic kidney cancer and I didn't even know he had cancer. He was diagnosed more than 3 years ago, and talked about it publicly back in April of this year. I don't check facebook every day, and I missed the post where he talked about his prognosis. I was diagnosed with cancer a couple months after our 10 year high school reunion in 2003, so I e-mailed him and a few other high school friends. He was very supportive, and has been supportive since then as I've dealt with cancer's aftermath. I feel bad because I wasn't there for his health crisis. He posted a picture to facebook on Halloween of him and his family (he was married, with two little girls). I 'Liked' the photo but failed to notice how much weight he'd lost or how he was on oxygen. I get so self absorbed in my own problems that I don't pay enough attention to those around me.

So, I had a drink for Mike Rich tonight.



Mike was a great guy. He was someone I greatly admired. Mike graduated from Stanford Law School and was a law professor at Elon University. Mike had a quick wit and extremely funny, sarcastic sense of humor. He was smart. So much smarter than I was. You see, we went to a public boarding school, the North Carolina School of Science and Math. All the kids there were gifted (not me; I think I avoided getting really bad grades because my brother died while I was there and the teachers took pity on me), but there were some, like Mike, who really stood out. He often hung out in my room, because my roommate was equally smart and we had a fast computer for writing papers and--more importantly--playing computer games. In the evening, when we weren't playing computer games, board games, card games, Dungeons & Dragons, or uh...homework, my friends often debated philosophy, politics, or scientific topics in front of me. I just smiled and nodded, unable to contribute anything meaningful to the conversation, but Mike knew what he was talking about. Recently, Mike often talked to the media in North Carolina, wrote papers or spoke publicly about the intersection between emerging technology and criminal justice. He wrote an OpEd for the NY Times, he was interviewed for an article in Time magazine on the usage of body cams. He was highly respected in the law community. I just watched a lecture he gave on the subject and it is fascinating. If you have any interest in criminal justice, I urge you to look up Michael Rich on Youtube.

Here's his obituary from Elon, which has a short video in which he talks about his work: http://www.elon.edu/e-net/Article/141138

Here's the obituary from his local paper: http://www.greensboro.com/obituaries/rich-michael-lee/article_b6eac05c-1196-575d-934a-59155d420a65.html?mode=jqm

Mike's law students loved him. This is obvious from all the emotional outpourings of grief posted on his facebook page. He took the time to sit down with all his students outside the classroom. Mike discussed their career path with them; he encouraged them; he gave them a shoulder to cry on; he was their friend years after they graduated. He really listened to people. This was all while he was going through his own battle with cancer.

I can't help but contrast his example with my own. While he dealt with cancer quietly, with dignity, rarely letting it overshadow the needs of friends and loved ones, I immediately broadcast my cancer diagnosis. My own public blog about my experiences with the aftermath of cancer treatment seem like a selfish cry for public validation, and I feel even more saddened/chagrined that I was not there for Mike as he was there for me during cancer treatment and at every stage of my subsequent health problems. I didn't take enough time in my day to take an interest at least in the exciting work Mike was doing. To send him a note saying how much I admired him. Mike really made a difference. The world is better because of him.

I only knew Mike for two years more than 20 years ago. The experiences I had with him, the full extent of my knowledge about Mike Rich, is such a tiny portion of who he really was. My picture of him:

He had a brother. Anecdote: Mike told me that he and his brother used to wrestle (as brothers often do). Mike used to grab his brother's legs to present him from climbing the stairs at his home. Panting desperately, his brother would say, "Must! Reach! Top! Save! World!" That story stuck with me, and now whenever my daughter grabs my legs I cry, "Must! Reach! [INSERT DESTINATION]! Save! World!

Mike was excellent at ultimate frisbee (our best player). He was a great basketball player and was often dismayed at my own clumsiness on the court. He was a good Dungeon Master when we played D&D--on an unrelated note, we were virgins. He was smart and funny. He was generous, respectful of everyone's opinion. He was a good listener. He was there for me when my brother died our senior year. He was a good friend.

He was so much more than that though. He was a loving father and husband. He was great at his job. He was looked up to by so many current, and former, students at Elon. He continued teaching for three years, through his cancer fight. I only know those things from what I could glean off his facebook and twitter profiles. Social media is great because without it, I wouldn't know any of that stuff. I probably wouldn't have found out about his death until my next reunion. Social media also serves to remind me of how out of touch I am with my friends. I told another high school friend about Mike's death and noticed that my other friend lived in Illinois. When did that happen? Last I knew, he lived in Atlanta.

I hope in the future I can express to my friends the impact they've had on my life and how much I appreciate them before it's too late.

Rest in Peace, Michael Rich.

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?