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