Rapid City

Betsy's grandmother passed away last May, so Betsy, Grace, Betsy's sister Katie, and I all traveled to Rapid City for the funeral. This was my first time taking a flight with the Vitamix.

Logistically, traveling with a feeding tube can be a bit tricky. Depending on the length of the flight, I usually carry on two or three Ensures to have on the plane or in between connecting flights. Or, I make a meal the night before and put it in a thermos to have on the plane. TSA usually doesn't give me any grief for bringing formula or meals through security. If they have any questions, I whip out my tube and tell them this is the only way I can eat. They quickly avert their eyes like, "that's too much information, dude," and they send me through with a quick frisk. It probably helps that I typically use a cane at the airport and I don't look 100% healthy so TSA can tell I've got issues.

Another concern with traveling as a tubie is how to bring the Vitamix. I have a hard suitcase that I pack it in because Vitamix Co. hasn't thought to make a travel case for their blender (doesn't everybody bring their Vitamix wherever they go?).

All I think when I look at this is that we need a new kitchen floor

I usually put towels or bubble wrap around the Vitamix. Even so, these blenders cost a few hundred dollars, so I'm always hesitant to check it as luggage. Plus, if I have a connecting flight, there's the risk my blender gets lost, so then I'm stuck away from home, forced to go out and look for formula. However, I still prefer checking the bag because I'd rather not deal with getting it through security or lugging it on the plane. I just try to book flights with no connections, and make sure I've cushioned the blender really well. So far--knock on wood--I haven't had any problems with a damaged or lost Vitamix.

So, for this trip, we got a direct flight from Atlanta (where Katie lives) to Rapid City. Katie traveled with us to attend the funeral and "help out" with Grace.

A few words about Katie.

She is Betsy's twin sister and they talk on the phone multiple times a day. With the invention of the iPad and FaceTime (thanks a lot, Apple), we now get to see each other multiple times a day...Multiple times a day...Multiple times a day. All. The. Time. Katie is there when I wake up (whenever I see her she drawls, "Hey Brian, watcha doin," not as a question; more of a "Hi Brian, I'm here...again..."); Katie is there when I go to bed ("Hey Brian, watcha doin"). Katie's face will look out from our iPad as we watch TV ("Hey Brian, watcha doin"), playing with Grace ("Hey Brian, watcha doin"), in the kitchen ("Hey Brian, watcha doin"), even outside ("Hey Brian, watcha doin"). Betsy sets up the iPad so Katie can eat dinner with us ("Hey Brian, watcha doin"). I wouldn't be surprised if Betsy or Grace left Katie in the bathroom one day, and I'm sitting there doing my business when suddenly I hear, "Hey Brian, watcha doin."

If I don't answer the phone, Katie panics and calls even more. She then proceeds to yell at her sister for not answering the phone. In her defense, Betsy yells at Katie if she doesn't answer the phone. Actually, they yell at each other quite a bit. I was too ill to travel to China when we adopted Grace so Katie went in my place. They videotaped the whole experience and it would be touching to watch if these two twins weren't constantly bickering with each other about EVERYTHING the ENTIRE time. By the end of the trip, they were barely speaking to each other.

The Wonder-Twins in China. This is early; when they were still smiling.

But that didn't stop them from talking on the phone several times as soon as Katie went back home to Atlanta ("Hey Brian, watcha doin"). So, for our trip to SD, it was less Katie helping out with Grace and more being responsible for two kids.

TripAdvisor gives it 4.5 out of 5 stars

Anyway, the flight there actually went well. There were no problems with security. I had an Ensure on the plane. When we arrived in Rapid City, I discovered that the blender was still in good shape. Betsy's father had driven out to SD early and he was at the airport to pick us up. We stayed at the Alex Johnson Hotel in downtown Rapid City. The first night, we ate at Tally's Silver Spoon across the street from the hotel. The service was excellent, and I'm told the food was good (though, again, they could have served me slop and I wouldn't know; but don't get any ideas, restaurants!). Washing my blender is always a challenge when I'm on the road. This time, I took the dirty blender back to my room and cleaned it as best as I could in the bathtub. Since then, I've asked the restaurants to run the blender through their dishwasher after my meal and it comes out much cleaner.

Supposedly the hotel is haunted

The funeral actually took place at Betsy's grandmother's hometown in Watford City, ND, so in the morning we made the 5-hour drive north for the funeral. We stayed there for lunch at The Main Street Grind. This was a good local place. They were very nice and had no problem with my tubefeeding. After lunch, we opted not to stay in Watford City (not really any hotel to speak of around there) and drove 5 hours back to SD. We stayed an extra couple nights in Rapid City to visit with Betsy's uncles. I ate at Tally's again for one dinner and her uncle Clark's house for another. I also had another breakfast at the hotel and one across the street at a diner. Everyone was very nice and understanding about the way I eat. Even though I brought about 15 Ensures for the trip, I ended up drinking hardly any because I was able to eat out so often. It was a good trial for traveling with the Vitamix and built up my confidence for future trips.

We had a little time for sightseeing. Not sure what I was thinking about here.

Note the iPad in Katie's hand; "Hey Brian, watcha doin"

Growing up, Betsy fondly remembers her family driving from Minnesota to where her grandmother retired in Clearwater, FL, every summer. Her grandmother had a swimming pool (not a common thing when you're from Minnesota), so Betsy and her sisters would get into their swimsuits at about the Alabama/Florida state line in eager anticipation of jumping in the pool. For some sadistic reason, on each visit, her parents would make the girls stand in front of a "Beware of Alligators" sign at a nearby pond for an annual picture. The sisters were petrified that as soon as they turned their back on the pond to smile for the camera, an alligator would jump out and grab them. To assuage their fears, Betsy's grandmother would stand between them and the pond with her hands on her hips as if daring an alligator to try to get her granddaughters. This is how Betsy remembers "Grandma Dottie."

With Grandma Dottie next to the pool Betsy loved, Jan. '05

IHOP

Thank you, IHOP at 7128 Kingston Pike, for being the ONLY restaurant so far to not allow me to use my blender.

you suck, IHOP

Grace had a hankering (yeah, I just used "hankering" in a sentence) for some pancakes last year and if there's one thing we Americans are good at, it's feeding our kids sugary, unhealthy food whenever they demand it. So, we immediately piled in the car and raced down to the nearest House of We-Put-Whipped-Cream-on-Everything so that we could instantly gratify Grace's latest craving.

Because nobody wants to eat a whipped cream frownie face

When we arrived, I rolled in the Vitamix while Betsy explained the situation to our server. She said blending up my meals would be no problem and went ahead and took our orders. Recognizing that IHOP has not yet perfected the gluten-free pancake, I adhered to my diet and ordered an omelet.

However, a few minutes later, the server came back to the table and explained that they could not blend up my meal. The manager told her that using a customer's blender in their kitchen would violate health code.

right...

The Chocolate Chocolate Chip Pancakes, CINN-A-STACK Pancakes, and New York Cheesecake Pancakes are perfectly reasonable for our health codes, but God forbid you introduce a foreign Vitamix into their kitchen.

"Hold the whipped cream. I'm watching my weight."

In retrospect, I guess I thought IHOP was a little more upscale than they really are. Now I see it's more like me taking my blender into McDonalds and asking the 16 year-old behind the counter to blend up my Big Mac and shake.

And anyway, I found out later that they put flour (gluten) into their omelets, so thank you IHOP at 7128 Kingston Pike for saving me from several weeks of eczema and saving Grace from childhood obesity.

"IHOP! Come Hungry, Leave With Type II Diabetes!"

The Chop House

The first place I tried eating out with my blender in tow was The Chop House on Kingston Pike in Knoxville. The Chop House is a fairly upscale, casual dining restaurant. We'd never been there but Betsy heard the food was decent. She really wanted me to be able to eat out on my birthday, so in December, 2011, she called the manager of the Chop House and asked if they could put my food in a blender. They said no problem, so we packed the Vitamix in a hard suitcase and wheeled it in the restaurant.

When I first started eating through a tube, I was very self-conscious about my eating. I avoided letting other people see me eat. I recall getting angry and upset when my father took a picture of one of my feeds in 2010. I hated the thought of people seeing that I was reduced to eating through a tube. I wanted everyone to remember me the way I used to be, not the broken man I'd become.

Gradually, I got over it.

In online groups, I read posts from other tubies and their caregivers. One elderly woman was the wife of a man who had recently gotten a PEG tube. He was despondent and believed that having a feeding tube meant that his life was basically over. His wife was wondering what she could tell him to lift his spirits. Another tubie, Bonnie, is a young, special needs girl who goes to public school in Oregon. The school will no longer allow her to eat through her feeding tube on school property. The school district considers tube feeding to be a medical procedure and has directed their aides to stop performing such a "procedure" on Bonnie. So, she can no longer eat with her classmates, which only serves to ostracize her more from her peers.

I recognized the stigma associated with feeding tubes. People like me are embarrassed to admit we have one, and the public doesn't fully understand that tubes are simply another way of eating. Eric O'Gorman was another tubie I met online. He lived outside Perth, Australia, and maintained an excellent blog about tube feeding, and life, called entropyandlight.blogspot.com. He also wrote a very informative book, Complete Tubefeeding. Over time, Eric's health and physical appearance changed more dramatically than my own. Yet he never let eating through a tube keep him from living his life. He finally succumbed to his rare illness last July. His death certainly was not a result of eating real food through a tube. Eric has inspired me to "come out of the tubie closet," so to speak.

So now I see myself as more of an ambassador for tubies.

Chicken marsala and berries (should've added wine to deal with the Chinese kid in the picture)

Starting with the Chop House, Betsy and I have explained my situation to each restaurant we visit. We also always leave a big tip at the end of every meal because we recognize that they are going the extra mile to make sure I can enjoy dining out with my family and friends. The big tip will hopefully also ensure that the restaurant will not hesitate to serve other tubies in the future.

Wouldn't it look better blended up with chocolate cake?

The food at The Chop House was great (at least Betsy and Grace seemed to like it; they could have fed me scraps and I wouldn't have tasted it), and the service was excellent. I ordered salmon. I usually get seafood because heavier meals like steak (or gluten free pizza) tend to make thicker blends that end up exploding onto my pants. They also offered a free dessert for my birthday so I cheated on my gluten free diet (sorry Ginger) and got a big chocolate cake.

We've been back to The Chop House since my birthday and it will always be a special place for me because it was the first place I was able to get back to living my life without feeling self conscious.

Why I eat gluten free

The answer is simple: because my sister told me to.

I know what you're thinking. "If your sister told you to jump off a bridge, would you do that too?"

To which I would reply, "Yes...Yes, I would jump off that bridge."

Right after this picture, she taunted me until I cried

You see, my sister frightens me. She presents a much more benign image to the public. If you met her, you would instantly become her friend. Regardless of your sex, nationality, age, political persuasion, religious views, or blood type, you would think, "This is the smartest, coolest, prettiest, most down-to-earth girl I've ever met in my life...and she's talking to ME!" Her name is Ginger, for God's sake! How could anyone fear a woman whose name is the same as a delicious cookie or that hot chick on Gilligan's Island??








But that's not the Ginger I know.

"I will break you."

The Ginger I know threw her poor, innocent, little brother against a couch (I think I was only two or three at the time, but I remember like it was yesterday) then laughed mockingly at his pitiful cries for mercy even after the X-rays confirmed that she had indeed cracked his rib. The Ginger I know runs a Crossfit gym in Germany where they speak an arcane language filled with words like "WOD," "pee-bee," "amrap," "double-under," "tabata," "enom," "muscle-up," and "burpee." She works our multiple times a day. She has become ridiculously strong. Just the other day, I heard that when a school bus filled with children veered off a bridge and into an icy lake, she lifted the bus to safety (or maybe I've just seen the latest Superman trailer; I get confused).

For a number of years, Ginger has been searching for reasons why my brother and I both got lymphoma (she has two sons and doesn't want them to share our fate). She is convinced that diet plays a role in rising rates of cancers like lymphoma. In fact, recent studies have shown that there is a link between gluten and non-hodgkins lymphoma. Gluten is a protein found in grains like wheat, barley, and rye. Today, food companies are putting more gluten than ever in their products to improve taste and texture. Gluten gives dough elasticity. It is also used worldwide as an additive to foods that are otherwise low in protein.





Ginger is not just against gluten because of its potential link to lymphoma. She, and other crossfiters, are proponents of the paleo diet. For more than two million years (the paleolithic era), Homo Sapiens were hunter/gatherers until we developed farming and began cultivating staples like grains, rice, legumes, potatoes, processed oils, and dairy. Paleo dieters believe that we have not yet evolved the ability to tolerate these cultivated foods. Therefore, the ideal diet is one that would have been consumed by humans before the agricultural revolution took place. The paleo diet is low in carbs and high in protein. This is ideal for crossfit's intense physical workouts. Perhaps that's why her biceps are as big around as my torso.

paleo.

not paleo.

Puleo's Grille in Knoxville. I don't know if you can get Paleo at Puleo's, but Puleo probably offers Paleo.

And here's the crazy part. Please don't tell Ginger I said this (I'm pretty certain she's too busy these days to read this blog). I know that you've already concluded that I'm the genius in my family. You are aware that 99.99999% of the time, the little brother knows best, yet there is a tiny, minuscule, once-in-a-lifetime, sliver of a chance that in this one, isolated incident Ginger may be not entirely wrong. I am willing to take the high road and admit this because I have seen some health benefits to stopping gluten. For years I have suffered from eczema and I had to use prescription steroid cream whenever, and wherever, I had a flareup. Yet, since I stopped eating gluten, my eczema disappeared. I have also noticed increased energy levels during the day. To me, these are signs that I am gluten-intollerant, and I've decided to maintain the gluten-free diet not only to stave off eczema but also to hold off any cancer relapse (and obviously, to avoid the wrath of my sister).

"Her first baby come out sideways. She didn't scream or nothin'"

*

If you disagree with the paleo diet (wouldn't surprise me, since it is a controversial subject), let me reiterate that all of my information comes to me from my sister, as well as an established scholarly journal I frequently plagia...er...I mean CITE called "Wikipedia." So, feel free to argue with Ginger, keeping in mind that she has the strength of ten men.

*Obligatory Planes, Trains, and Automobiles reference

Why I blend real food

There is an ongoing debate between those who put formula (like Ensure or Jevity) in their tubes and those who eat real food (what we call a "blenderized" diet). Many people have no choice in the matter. For example, there are ng feeding tubes that get to your stomach through your nose. These tubes are thinner, and I'm no expert but I'd imagine it's a lot harder to push a steak through your nose than my relatively larger Percutaneous Endoscopic Gastrostomy (didn't think I knew what it stood for, did you?), or PEG, tube.

This little man is starting the feeding tube diet early

There are also J-tubes (jejunostomy) that are inserted directly into your intestines. These tubies are also often restricted to a certain diet.

Interesting side note: the first recorded use of a feeding tube was at least 3500 years ago when Greek and Egyptian physicians used reeds and animal bladders to rectally feed fluids, like wine, to patients to treat a variety of ailments. Yeah, the first tubies were butt chuggers. Our society has progressed so much since then.

Yet there are many other tubies who have a choice about what they eat. When I first ate exclusively through my tube in 2009, I was adamantly opposed to the blenderized diet. I remember sending my sister a sharply worded e-mail explaining how my day was filled with tube feedings. Each Ensure-Plus is about 350 calories. My nutritionist wanted me to take in seven Ensures a day. In the morning, Betsy would crush my pills for me. I hadn't yet discovered the syringe holder yet, so I would have to carefully balance my nearly useless left hand on the edge of the table with my syringe grasped between my weak thumb and forefinger. I would carefully pour my pills and formula into the tube, filling it up nearly to the top (spills were common in those days). The tube wasn't high enough for the liquid to go down by gravity, so I would take the tube in my right hand and raise it up until it emptied. Then I would clamp off the tube, put it back in my left hand, and repeat this until all the formula was gone and I'd thoroughly flushed the tube with water. The tube holds about 1/3 of a cup of fluid. The Ensure, plus water to thin it out, plus my pills, came out to 2 1/3 cups, plus about a cup of water to flush. I was looking at ten or eleven syringe-fulls of fluid. Add this to the fact that our pill crusher was not so good (now I use a mortar and pestle. much easier and I can do it by myself without bothering Betsy) so I'd often get clogs. Because of this, I'd often end up sitting at the table much longer trying to coax the pills down the tube. It was maddening, and I was going to grad school here at the University of Tennessee so I was at my wit's end, often tube feeding in my parked car or in the classroom between classes.

I didn't see how actually preparing a meal with real food, then pushing it through the tube would help. Real food blends are thick and require a plunger to physically force it into the stomach. I couldn't push it in with one hand, so I would need Betsy to feed me every time. Also, I didn't yet have a Vitamix, and my low-end blender couldn't blend up meals as smoothly as I needed. With real food, I had clogs much more often so eating was a long, frustrating ordeal for Betsy and I.

I experimented with pumps to gradually pump in the food over time but with a pump I'd be chained to one spot for an hour. I was given a portable pump to carry in a small bag, but clogs were common. Finally, I started doing feedings at night while I slept. I switched to a different formula because Ensure was making me nauseous. The new one was TwoCal HN. It was 500 calories a can rather than 350. TwoCal also made me nauseous. I was steadily losing weight with no idea what to do.

Don't they look delicious?

Then, at the end of 2009, I started looking online for answers. Surely there were other people with feeding tubes out there. Did they share any of my problems? I became aware of a huge community of people all over the world in my predicament. Mostly, I've found that it is mothers caring for their tube-fed children. But there are also thousands of adults from all age groups. Many of these people were finding that they, or their loved ones, were responding much better to blended, real food. What matters is not just how many calories you take in, but the type of calories. Ensure and TwoCal are able to pack hundreds of calories into an 8-ounce can because they use A LOT of sugar. Then they pump in some vitamins and minerals and call it "total nutrition". Most nutritionists agree with formula companies, and further argue that putting real food into the tubes is not sterile. Without saliva from the mouth to help destroy bad bacteria and start to break down the food, tubies are opening themselves up to serious GI illness.

Regardless of the risk, I was willing to try anything. Also, even though I thought it would be time-consuming, I was excited about actually preparing a real meal rather than opening a can. I'd heard all sorts of good things about the Vitamix online. I was hesitant to pay $700 for a brand new blender, but I remembered that a friend in Colorado, Julie, had a Vitamix that she said she rarely used. I asked Julie if she'd donate her Vitamix to me and she agreed (thanks again Julie and Mike if you're reading this!!! It's a little more beat up after daily use, but running fine!). I was in business!

I think my first meal was chicken I'd softened up real nice in the slow cooker (I didn't fully appreciate the power of the Vitamix and thought soft foods were the way to go). What a difference real food made!!! No nausea, and I could take much more volume into my stomach without feeling sick. With Ensure, I could barely handle 24 oz of fluids, but with a blender I could do two, even three, times that amount. I felt full and satisfied after my meal whereas formula never left me sated, only sick and dreading the next feeding.

My religion is blenderized diets and this is my God

I started experimenting with my meals. I didn't really care about being healthy and this was before I started eating gluten-free (more about that in a future post), so I was putting donuts together with cheeseburgers and chips, or pizza and wine with cookies. You name it, the Vitamix would blend it. I got excited about food again. For the first time, I started cooking for the family.

Betsy and I were both seriously lacking when it came to cooking (I mostly married her for her looks). I started getting recipes online and cooking dinner every night. I have grown to love cooking, even though I never taste the food I cook. Betsy and Grace are my taste testers. If they don't like my meals, I just put on the guilt trip. "That's fine," I mumble forlornly, "I slaved away all day in the kitchen making a meal I'll never be able to enjoy, and you think it's a little too salty. WHY DON'T YOU MAKE YOUR OWN DAMN MEAL NEXT TIME?!? OH, YOU WANNA CRY NOW?!?"

Sorry, where was I? Right, real food is awesome! I only eat 3 meals a day, like a normal person. I do have a can of formula in the morning to save some time, but no more nausea. My syringe holder allows me to feed myself wherever I find a table. The mortar and pestle allow me to crush my own pills. I enjoy a level of independence I never had in 2009.

And now, for more than a year, I've been taking the Vitamix out with me. It serves as my "teeth" and lets me eat with Betsy and Grace.

BTW, the whole time I've been eating real food from a blender (more than three years now), I've never had a single problem with GI issues from "non sterile" blends.

Why I'm a tubie

The short answer is that I had jaw surgery in April, 2009, and the surgeon cut a nerve. I woke up with the left side of my face paralyzed, not being able to swallow--and I haven't been able to since. I don't blame the doctor. I knew the risks going in. Another doctor advised me not to do the surgery. It was a very complicated procedure; replacing my damaged left lower jaw with the tibia from my left leg. The other doctor said I could be left worse off from the surgery. I figured, how much worse could I get?

The "Before" Shot, Afghanistan, 2002

I already had plenty of issues with my mouth, really everything from the neck down. It started in late 2003 when I was diagnosed with non-Hodgkins Lymphoma. It was diffuse large B-cell lymphoma, stage II, in and around my left tonsil. Really, if you're going to get lymphoma, this is what you want. I caught it early, it was fast-growing (this is a good thing), there is a standard treatment that guarantees around 75% survival. And the 25% who don't survive have other health problems or are elderly or caught the cancer too late. I was just 28, healthy, athletic. Honestly, there was no way this cancer would beat me.

In 1992, my brother had a different type of lymphoma--Lymphoblastic--when he was 22. Lymphoblastic is much worse. It spreads rapidly, there were limited treatment options at the time. The cancer got into his bone marrow and he was unable to find a donor for a bone marrow transplant. On top of this, he had a bad reaction to radiation treatment and he ultimately passed away after a 7 month fight.

I was a bit nervous because of my brother's experience with lymphoma, but still remained confident. Chemotherapy was somewhat difficult, but with only 6 treatments it wasn't nearly as bad as I thought it would be. By the end of 2003, tests showed no trace of cancer left in my body. I was in remission. My oncologist (I was living in California at the time) thought I should get radiation, just to make sure the cancer would never come back. That was fine with me. Chemo wasn't so bad. Why should I not get radiation so I could continue with my Air Force career with no fear of a relapse?

Dec. '03, chemo with my favorite oncologist

Radiation sucked. I went in to see the radiation oncologist every weekday. I lay on a table for a few minutes while a machine whirred, hitting me with charged particles. After just a few treatments, I was suffering severe burns on the left side of my head and neck. I was in constant pain, unable to eat. My left ear started ringing constantly (it still rings today). I got TMJ in my jaw, meaning I had limited opening. The opening has only gotten smaller since then. The radiation oncologist couldn't explain my bad reaction. Like my brother, radiation did not agree with me. The plan was for me to get 25 treatments, but the burns on my neck and sores in my mouth got so bad that the doctor ultimately decided to stop treatment after 20. Radiation was over in April, '04. Cancer treatment was done. Betsy and I moved to Colorado Springs. I thought I could move on with my life.

A year later, April 2005, Betsy and I were out hiking and I stepped in an icy stream with my right foot. It felt warm to me. My right leg, below the knee, could no longer distinguish between hot and cold. I thought maybe I'd pinched a nerve and my neurologist ordered an MRI of the lower part of my body. He saw no problems, but the sensory loss persisted so I got an MRI of my head and neck. The neurologist was shocked to find a dark spot on the left side of my cervical spine. He diagnosed it as Central Nervous System (CNS) lymphoma. CNS lymphoma is bad, like 5-10% survival rate bad. Betsy and I were stunned. We'd have to go through it all again. We tearfully called our families to break the devastating news. A week later, I got a spinal tap, to verify the presence of cancer. However, the spinal tap (BTW, spinal taps are great fun. You should go get one sometime. Or get several. Each one is better than the last one) showed no cancer. Was it just in the early stages? My neurologist had a new theory. This was radiation damage (radiation-induced neuropathy to be precise) from the treatment I got a year ago. He referred me to a neuro-oncologist in Denver.

Ok, no CNS lymphoma. I can handle some sensory loss. At the time I was more concerned with my TMJ, which was making it impossible to take big bites of food (no more large hamburgers or sandwiches for me, oh no!).

The neuro oncologist gave me a clearer picture of my neuropathy. The damage was to the left side of my cervical spinal cord where the sensory nerves for my right side, and the functional nerves for my left side are bundled together. Radiation damage progressively gets worse over time, so I would gradually lose feeling on my right and strength on the left over the next year or two. This is rare; most people do not react so badly to radiation and even fewer get damage directly to their spinal cord. My doctor could not say how bad the damage would be. I could be completely paralyzed on the left and lose all feeling on the right. Furthermore, the level of damage could level off for a few years, then I would continue to deteriorate. There was no telling how bad I'd get and I would always have to worry about further problems down the road.

I was immediately placed on an extremely high dose of steroids (decadron) to stave off the radiation damage. Steroids became our new nightmare. They caused wild mood swings. I would cry at a Hallmark commercial one minute and yell at my wife over something inconsequential the next. My doctor put me on Wellbutrin for depression, but we discovered Wellbutrin lowers my seizure threshold and I had a grand mal seizure (my wife still has nightmares about how I stopped breathing and turned blue during the seizure). So, no more Wellbutrin. I was too afraid to try any other anti-depressant so I continued to be miserable. I was unable to sleep. I had severe constipation and developed hemorrhoids. Day and night, I would think of nothing but food. Guys think about sex every couple minutes right? In my case, sex was replaced by food. I ate constantly and started gaining weight. Even when I tried dieting (which made me more moody), I gained weight, going from a scrawny 125 to a tubby 185.

Betsy renewing her wedding vows with "Fat Brian". The camera adds a couple pounds.

Prolonged steroid use diminishes the muscles, so I was growing weaker with or without the decadron. At last, in late 2006, I tapered off steroids and the radiation damage seemed to have leveled off. I couldn't run anymore and walked with a limp but I wasn't in a wheelchair. My arm had less strength than my leg but was still functional. Unfortunately, my arm has gotten much worse since then and is almost completely paralyzed, but it's not my dominant arm. I was already adapting to only using one hand. I could drive. I could eat.

The Air Force ultimately decided that my health was too poor and I was retired in November, 2006. I was keeping up with physical therapy and starting a new job as a defense contractor (same type of work, but more pay for less hours; not a bad line of work). Dare I hope that I could move on?

Then, my left lower jaw started hurting.

X-rays showed I had osteo-radio-necrosis in my left lower jaw--radiation damage to the bone tissue. At first, I had a couple surgeries to debride the bone, or scrape off the bad parts leaving healthy tissue. The debridment seemed to work. I went through 2007 with no major problems (finally, a trouble-free year!). Then, I got a small fracture in the jaw bone. Immediately, I was put on a liquid-only diet; no more chewing. Due to radiation damage, the jaw bone would never heal on its own. So, I was sent to Wilford Hall, a military hospital in San Antonio, for two long surgeries. The first, in the Spring of 2008, was to remove the rest of the jaw bone and put a titanium bar in its place with a huge exterior bar screwed into the other bones of my face--I guess, this was to make sure I didn't fall apart completely or to really make me stand out in a crowd). This surgery was over 8 hours, and Betsy waited in the hospital through it all. At the end, when she came to see me recover, I still wasn't completely conscious but I was so swollen with tubes and wires everywhere that she nearly fainted at the sight of me. We went home with the exterior bar still attached to wait for me to recover enough from the first surgery so I could do the second one in late summer. I was still on a liquid-only diet, losing weight, and anxious for it all to be over.

The stabilizing bar for my jaw, or it's a convenient handle to use when you want my attention

When I returned to Texas, the oral surgeon decided to continue with the second surgery. This one was over 12 hours. The doctors took part of my left pectoralis muscle and flipped it up to my jaw with blood vessels still attached to give the area a better blood supply. They also removed part of my right hip bone and grafted it to my lower jaw. This would be my new jaw bone. I went home extremely sore but cautiously optimistic as always. A couple months later, when I returned to Texas for a follow-up, my surgeon discovered that my jaw bone was gone, or reabsorbed, leaving nothing but the titanium bar. The surgery didn't take.

The Wilford Hall approach didn't pan out, so I found myself at the University of Colorado hospital for the tibia surgery. Now you see why I thought, "how much worse could it get?" I was already on a liquid-only diet with a bar for a jaw bone. I could barely open my mouth anyway. Swallowing was already not as good as it used to be. Loss of feeling on my whole right side, weakness on the left. By this time, the arm was almost entirely paralyzed. Loss of hearing and ringing in my left ear. Burning nerve pain in my right leg (did I forget to mention that?). Why not do this last jaw surgery and maybe get back to eating again?

The last surgery was not the longest (only 6 or 7 hours) but was the worst surgery by far for me personally. I went through my first night of lucidness believing that it would be my last. Betsy had gone home for some much-needed rest. Alone in my room, on strong pain meds, I was hallucinating. I saw strange, frightening creatures beckoning me from the walls and was sure they were waiting for me in the afterlife. I was still on a ventilator with a tube down my throat and unable to talk to anyone. It was the longest night of my life.

The next day, I was still around when Betsy returned. When the tube came out, the nurse brought me my first sip of water. I immediately coughed it back up. I couldn't swallow. Not only did the tibia surgery not work (the bone also got reabsorbed, leaving a titanium bar that will eventually rub through my skin. fun!), but now I couldn't swallow. My second opinion doctor was right. I was worse than when I started.

About a year after the tibia surgery

So, that's the long version of why I eat through a tube in my stomach. I still left out plenty of stuff like bacterial meningitis, hydrocephalus, blood thinners, THC pills and adverse reactions to other drugs, infertility treatments, hyperbaric oxygen treatments, continuous fears of relapses, all the MRIs, X-rays, CTs, PET Scans, and spinal taps, and more I'm probably trying to forget. So consider yourself lucky that you only had to read this much!!!

I don't blame anyone for this. My oncologists were good doctors. We just never realized how sensitive I was to radiation. Initially, I was angry with the Air Force for retiring me. My next assignment would have been grad school in Monterey, California, then teaching at the Air Force Academy. This was not physically demanding work. How dare they say I was unfit to serve?? But, I think after reading this, we can all agree that they probably made a wise choice.

I consider myself extremely lucky. I got full retirement benefits as a medically retired Major, including health insurance (a HUGE bonus for me). Plus I can tell all those puny retired Captains and Lieutenants what to do (not really, but wouldn't that be cool?). We have a beautiful adopted Chinese daughter who is the light of my life.

My Chinese princess in Aspen

Through all of this, the chemo, radiation, steroids, and surgeries, Betsy has stayed with me (but honestly I have to go to her yearly checkups so we're about even, right?). I've come in contact with some amazing people who I never would have met without cancer. I continue to meet new people, like the entire tubefeeding community or disabled veteran community or countless cancer survivors, who inspire me to push myself every day. Let's be honest: I'm a white, college-educated man living in the US, so I have no illusion that I've got it tough.

But at least now you know why I'm a tubie.

The "After" picture with my trusty steed

Brixx Pizza

You can't really call yourself tube fed until you've managed to squirt a syringe-full of formula or blended food or crushed meds into your lap. I usually do this whenever I've failed to put a towel in my lap, thinking, "oh, this time I won't have any problems; why should I bother with a silly towel?"

And, you haven't really lived until you've not only sprayed yourself with blended food, but the other people at the table, the dog, the walls, the ceiling. It seems impossible that a little syringe-full of food could do so much damage, but I've done this. Multiple times.

Anyway, my mother was in town and we decided to go out to a local pizza place, Brixx Pizza. They make awesome--I've been told they're awesome, I've never actually tasted them--gluten-free pizza, and they have gluten-free beer and hard cider. Betsy talked to the manager when we got there and of course they had no problem with blending up my meal in my trusty Vitamix and bringing it out to me.

Getting my meal to be the right consistency to get through my tube is a fine art. I usually tell them to dump in the food, add about 12 oz. of water, and blend it on high for a couple minutes to be sure there are no chunks that may get lodged in the tube.

Many a steak has passed through here

Unfortunately, certain breads or starchy foods require more water to get a thin enough blend. Then, I run into the problem of requiring a large amount of fluids to get a whole baked potato through the tube. I ran into a similar problem with the pizza. They used 16 oz. of water and the blend was still pretty thick, but I thought I'd be able to muscle it in.

I am unable to use my left hand, so I use a syringe holder that a guy I met online invented to help him feed his tube-fed son. This also means that I'm not able to make sure my syringe doesn't pop out of the tube if too much force is applied to it. It just hangs there and usually stays on, but with especially thick blends or with stubborn clogs it may shoot off and spray me and the ones I love with food.

Needs to be patented

So, what I'm getting at is this happened at Brixx Pizza. I got blended-up pizza in my lap. I added a little water to the blend, stirred it up a bit, then gave it another shot.

It happened again. Another blend in my lap. I'm new to this blog, but the next time it happens I'll try to get a good picture of the mess and collateral damage so I can proudly post it for your viewing pleasure.

Next time, I'll try to spray strangers at other tables.

Snowmass Trip

Last week, I had the good fortune of going to the National Disabled Veterans Winter Sports Clinic in Snowmass, CO. There were plenty of inspirational stories there; blind veterans, paraplegic, traumatic brain injury (TBI), spinal cord injuries like me. But, I was the only one I could find who eats through a tube. We stayed at the Wildwood, but mostly ate at the Westin Resort. They were AWESOME!! We ate at the Westin's Snowmass Kitchen the first night. I hadn't gotten my suitcase with my Vita-Mix yet so I didn't think I'd be able to eat dinner with Betsy and Grace. The head chef came out to our table and offered to blend my meal in the the restaurant's Vita-Mix. He also gave us his personal cell phone number and told us to call him any time if we needed help during our stay. I can't say enough good things about the people at the Westin.
 
During the week, I got the opportunity to snowboard. I haven't been since college, about 15 years ago. I had some great coacches, Michelle Schaefer and Joey Lunger. They helped me get my confidence back up and by the end, I was cruising down the slopes (with a bit of help).  I can't wait until next year's clinic!!!

"Skiers Suck!"