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?

Health Update

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

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

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

Sorry if you're in the middle of eating

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

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

We went to the local air show over the weekend:

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

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

I'm eating a Real Food Blend, naturally

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

She whined the whole way though

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

Decisions, Decisions

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

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

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

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

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

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

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

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

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

Waiting…

Waiting…

HBO GO

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

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

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

You like my ink?

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

I lied before. I take bi-monthly showers.

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

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

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

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

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

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

Not so cool for 90 minutes if you're claustrophobic

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

Syringe holder update

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

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

See their handy promotional video

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

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

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

FNCE 2015!

A TALE OF TWO FAMILIES

The Bombacino's

Julie and Tony Bombacino have two children.  Their youngest, A.J., is four years old.  He's been diagnosed with cerebral palsy, global developmental delays, autism and epilepsy.  Due to his condition, he is still unable to walk or communicate.  He also eats through a feeding tube.  When Julie first started feeding him at home, he couldn't tolerate any of the formulas his doctor prescribed.  So, she started blending all his meals up in a Vitamix.  This proved to be time consuming, but it worked, so the family endured.

Julie and A.J., who is also Superman

Then, on a family trip to Disney World, while spending most of her time blending food for her son, Julie had an idea.  What if there were commercial, shelf-stable blended meals for tube feeders?  Not formula; REAL food, with REAL ingredients like she blended at home!  Julie went through all the steps of starting a business: work with nutritionists and food scientists to develop meals and get them approved by the USDA, get investors and launch a crowdfunding (Indiegogo) campaign to raise money and awareness, find a factory in the U.S. that could mass produce each meal, develop a website and marketing campaign, and I've probably missed a few dozen more steps she went through. Around January, 2014, the Bombacino's dream became reality and the first Real Food Blends started shipping out to eager customers.

Coming next month in powdered form!

Fast forward to today.  Real Food Blends has grown dramatically.  The meals are approved by most insurance and starting to be accepted in hospitals.  A new meal is coming out next month (Turkey!). Julie and Tony are incredibly busy.  Meetings with insurance companies, hospitals, doctors, nutritionists, dietitians, and individual customers have them criss-crossing the country with little time for themselves.  On top of this, they still have to focus on A.J.  He still has seizures, still can't talk or walk.  They still need to bring him to see various specialists both near and far from their home in Indiana.  A.J. is the C.I.O. (Chief Inspiration Officer); they started this whole thing because of him. They pour so much love and support into their tube-fed son, and now they've taken on countless other tubie children and adults who rely on Real Food Blends for their nutrition.

Forget the meals; how do I get a Real Food Blends chef's coat??

The Liebenow's

Brian and Betsy Liebenow have one kid, Grace.  She's eight.  The other day, the couple were sitting on the couch watching T.V. when Grace called down from the kitchen:

"Mommy!" ...no response... "MMMOOOMMMMEEEEEEE!!!!!!!!!"

"Yeah?!?"

"I'M HUNGRY!!!"

"Well, find something to eat!"

"WE DON'T HAVE ANYTHING!!!"

"We've got lots of stuff. Have a granola bar!"

"I DON'T WANT A GRANOLA BAR."

"Keep looking!"

"MOMMY, MY TUMMY HURTS BECAUSE I'M SO HUNGRY!"

"Fine. I'll make you some ravioli. JUST LET US WATCH THIS SHOW!!"

I'd say one of these couples isn't putting the proper amount of effort into parenting.                 


                                                                                  

Early this month, Julie and Tony were in Nashville for the Academy of Nutrition and Dietetics' annual Food & Nutrition Conference & Expo (FNCE).  Nashville isn't too long of a drive from where we live, so Julie asked if they could take Betsy and I out to dinner one night.  We were thinking, YEAH, sounds great!  Free dinner and we can spend a Saturday night in the 'big city' away from the in-laws!  Ok, maybe it was just me thinking that last part, but I told Julie that it would be awesome to meet them and learn a little more about the company.

Then Julie said that since we were in town, maybe we'd like to stop by the Expo for the day on Sunday and spend some time at the Real Food Blends booth.  She also said Real Food Blends was willing to pay for our hotel room for the night.  This overnight stay is sounding better and better! The FNCE is where registered dietitian nutritionists, dietetic technicians as well as many researchers, educators, students, nurses, physicians, pharmacists, clinical and community dietetics professionals, consultants and food service managers from all over the country gather to learn about the latest trends in nutrition.  The Expo happens in a different city every year, and this year it was in a huge room at the Music City Center in Nashville.  The day we were there, over 11,000 people were in attendance.  It's kind of a big deal.

Saturday afternoon, Betsy and I left Grace on a street corner to fend for herself and drove over to Nashville.  We checked into our hotel room, then met Julie and Tony for dinner at Puckett's, a really popular barbecue restaurant a couple blocks from where we were staying.  Thankfully, Julie had reservations because this is one of those places where it is impossible to get a table on a Saturday night without reservations.  Like pretty much every other restaurant we've been to, the wait staff at Puckett's were very accommodating.  When the first table they showed us didn't fit my syringe holder, they let us take another one that was thin enough for me.  I ended up getting the BBQ patter with a mix of pork, chicken and brisket.  The meal included sweet potato fries, baked beans, and coleslaw, but I left off the fries so my blend wouldn't get too thick.  I also got a Peach Ice Tea (like a Long Island Ice Tea, but peachy) because Real Food Blends paid for my meal and if there's one thing I'm good at, it's being a freeloader.

Would've been a good pic, but a weird couple photobombed me

The next morning, Betsy and I walked to Music City Center to check out the Expo.  It was so fascinating to see!!  It's like going grocery shopping, if there were two people standing behind each item in the store explaining why it's such a healthy product.  All the big food companies were there. Betsy and I only walked around a little bit, but some of the booths I saw in no particular order:  Kellogg's, Monsanto, Abbott Nutrition (makers of Ensure), the Sugar Association (ironically, this was at the booth next to Real Food Blends), Dole Fruits, Blendtec (didn't see the Vitamix booth but they were there), Campbell Soup Company, Organic Valley, Chick-fil-A (one of the more popular booths), Dr Pepper Snapple Group, Gluten Intolerance Group of North America, Kikkoman Foods, Nestle, NutriBullet, PepsiCo, StarKist, the Wild Blueberry Association, the Cranberry Marketing Committee, Pfizer, and Sun-Maid.  This is just a fraction of the 380 exhibitors at the Expo and most of them were giving out free samples, so you could graze your way through the conference if you were so inclined. 

The best part of the day, by far, was sitting in the Real Foods Blend booth and watching Julie and Tony changing hearts and minds about eating blended food through feeding tubes. Like I said, there were thousands of health professionals in attendence and many of them (most?) had patients with feeding tubes or they were students preparing themselves to work with tubies.  This was the third year that Real Food Blends had a booth at FNCE, so there wasn't quite as much disbelief from attendents on feeding tubies real food, but there were still those who insisted that blended meals were "too unsanitary" to use in a hospital setting or didn't offer the "total nutrition" that Abbott Nutrition touts with their formula products.

Julie and Tony spreading the gospel of real food

"Who's that hot tubie model at the RFB booth??" -overheard at FNCE 2015

I especially enjoyed sitting in the booth while Betsy pushed a coffee and Salmon, Oats & Squash meal through my tube.

Oh, Betsy is the hot model

I liked being able to tell people that I've been eating Real Food Blends since they started and the meals ABSOLUTELY sit better in my stomach than Ensure ever did.  I think bit by bit, the health community is becoming aware of the benefits of eating real food, rather than corn syrupy formulas.  Hopefully Betsy and I helped Julie and Tony on Sunday, but then we had to get back to our couch and starving child, while the Bombacino's continued making the world a better place.

Bolender Horse Park, WA

Last month, I was lucky enough to take part in a mountain trail horse riding workshop for wounded warriors.  The Wounded Warrior Project sponsored the event and paid for everything, including our flights to western Washington for the event.  My post is kind of long and rambling, so if you’re just interested in the travel aspect, please read the next section.  If you’re more interested in the horse riding, feel free to skip down to that part.

The Flights

Unfortunately, Betsy couldn’t join me for the trip because Grace has already started school.  This was my first time traveling by myself since I got my tube, and I was pretty nervous about flying alone. 

Flying alone is a whole lot easier when you have a good book to keep you occupied!

Betsy called the TSA Cares phone number at 1-855-787-2227 to make sure someone would help me, my suction machine, and my meals get through security.  Usually, one or two TSA agents meet me at the ticketing counter and escort me the whole way through.  It’s a great program, and we’ve been very happy with it—until my return flight from Seattle.  

Betsy called the TSA line before my flight back and they said they would meet me, same as always. But two hours before the flight at SEATAC, nobody met me at ticketing.  Betsy and I called the TSA Cares line after I’d waited a while and they gave me the number for the local agent (Patty Something) in charge of helping out people with disabilities.  I called her number and got nothing but an answering machine.  At this point (an hour left until the flight) I was panicking because the line to get through security was insanely long and I was thinking I should be standing in line rather than waiting at ticketing for TSA.  I finally asked my airline (American) if they could help get in touch with someone at TSA.  They said they didn’t have a way of calling TSA.  Really, American Airlines??? Are you not on speaking terms or something??  There were agents all over the place, so I walked up to the closest one and asked about TSA Cares for disabled veterans.  He said that TSA couldn’t escort me through security.  I would have to get my airline to do it, even though TSA has escorted me through security at every other airport I’ve been to.  So, I’m freaking out because I’m running out of time.  Betsy is freaking out because I had her on the phone and she wanted me to give it to the nearest agent so she could chew them out.  American airlines finally got someone (who spoke no English) to help get me through security and I’m thinking that there’s no way I’ll make it.

But, I was worried over nothing.  The no-English guy apparently knew some shortcuts because he got me right up to the front of the line.  The TSA agents were very nice and helpful during screening, though I didn’t even want to ask them about TSA Cares.  At that point I just wanted to get to my gate. Anyway, the moral is, we’ll make extra sure that a local agent will help me out next time.  If there is a next time.  Betsy made a formal complaint to TSA.  She was really stressed out over the whole thing and doesn’t want me to do any more solo traveling.  

Going to, and coming from, Seattle, I had to make a connection in Dallas which required me to ride their Skylink system between terminals.  The one-hour layover gave me time to do it, but I move pretty slow and I felt rushed.  I didn’t really have time to stop and eat; just some time to hit the bathroom then jump on the next plane.  I had to do all my eating and drinking during the three hour flight between Dallas and Seattle

Coffee with butter and coconut oil on the way there

Can I eat a powdered Real Food Blend, glass of wine, AND bottle of water by myself flying coach???

DAMN RIGHT I CAN!!!!  My neighbor doesn't seem so impressed...

...and at SEATAC’s USO while I was waiting for transportation.

Real Food Blend at Seattle's USO when I arrived; had more coffee before I left

I brought my syringe holder in my carry-on so I could eat independently.  I also packed some butter and coconut oil in a small tupperware container.  This was for both lubricating my syringe plunger, and for bulletproof coffee during the long travel day.  Other than a couple hours of stress in Seattle, I’d say travel was a success, although it’s a whole lot easier with Betsy to help out.

Luggage carts are a necessity when flying solo

Dan and Bolender Horse Park

I met the other eight veterans I’d be spending the next five days with at SEATAC (another veteran didn’t arrive until the next day) and we rode a shuttle bus down to the horse training facility that Rainier Therapeutic Riding used for the event.  Getting to know the veterans, I became pretty intimidated by my relative lack of horse experience.  I’ve been riding horses for an hour each week with a disabled veterans program in Tennessee for about three years.  I’ve been riding independently (with no one leading the horse) for a couple years, but only in an arena setting, where my horse has limited distractions.  

So, no distractions like this one

Most of the other veterans had considerably more time on horseback.  One guy ran a veteran riding program in Gainesville, Florida.  Another managed a program where veterans spent time with horses in southern California.  A Marine vet from northern California frequently went trail riding in the Sierras with his neighbor’s horses.  And winning the prize for the most time in the saddle:  a 19-year Marine veteran from Phoenix rode across the country to raise awareness for disabled veterans.  

Group shot. The horse and vet to my left are freakishly tall. Just had to say that.

Save for myself and one Navy veteran, all the participants were either Army or Marine vets with varying time in service (from a few years to 26) and various wounds.  Most bore the invisible scars of PTSD on top of other injuries sustained in combat or from accidents back here in the U.S.  I was the only one who ate through a feeding tube and had no use of an arm (though another vet had some paralysis in his dominant arm), so they all said they were inspired to see me out there.  Honestly though, after hearing some of their near-death experiences, and knowing there were many other stories too painful to share, I was extremely inspired to be with them and honored to be included in this group of riders.

This was only the second time that PATH (the Professional Association of Therapeutic Horsemanship) has tried to have a mountain trail program for disabled vets—the first was a couple months earlier.  They were anxious to make sure it was a success so they can continue doing it in the future.  Rainier Therapeutic Riding (RTR), based in Yelm, WA, opted to hold the event at Bolender Horse Park, about an hour south of Yelm.  The park is managed by Mark Bolender, who is world-renowned for introducing his own unique style of mountain trail riding and competitions to the equestrian community.  Mark built a beautiful mountain trail course on his 40-acre farm with many challenging obstacles for both horse and rider to overcome.  I was especially awed when he and his horse, Checkers, breezed through every obstacle—backwards and forwards—with no bridle. Checkers knew instinctively what Mark wanted to do from the way he applied pressure with his legs.  

 

 Short Clip From Mark's Demonstration (thanks Joe)

Also, check him out doing this timed competition with no bridle

Our challenge was to learn how to lead (and ride) our horses through some of the easier obstacles in four days, so we could prepare for our horse show on Sunday.  The first step to accomplishing this feat was to earn the trust of the horses we met on Thursday.  My horse was a 16 year-old Mustang named Dan who came from a wild herd in Oregon.

"I used to be wild and free, but now I'm stuck with this loser"

Such a handsome guy!!! Dan looks good too.

A few words about Dan.  Dan is a Mustang who gives Mustangs a bad name. 

Dan's ink shows which herd he came from and when he was claimed by the B.L.M.

I say this because when I think of Mustangs, I think of spirited horses, as wild and untamed as the prairie lands they roam on.  If Ford Motor Company had known Dan when they were developing their signature muscle car, they would have changed the name to the Banana Slug.  This may sound like I didn’t care for my horse, but I absolutely adored him.  Dan reminds me a lot of my dog, Aspen. They are both extremely mellow and not bothered by much of anything.  If robbers broke into our house and held us at gunpoint while stealing our most valuable possessions, Aspen probably wouldn’t get off the couch—unless they offered him a treat.  

He's got fleas so you should probably avoid sitting here

If all the males in Dan’s herd decided to start an epic battle for dominance, Dan would just continue contentedly munching on his hay—and likely the hay of the otherwise occupied males.  These are the kinds of animals I like.  Let the other guy go and try to achieve dominance over his wild stallion.  I’m cool with the Zen animal who does all his thinking with his stomach.  

"You promised me five apples after all this, you jackass!"

Yes, Dan couldn’t take his mind off food and water.  You’d think they were starving him, but I was giving him the same hay every other horse got, even the massive horse (Zeke) the 6’7” vet was riding.  Plus I was slipping Dan apples on the side like crazy. All this food didn’t stop him from trying to eat every tuft of grass within reach on our course or guzzling down half the pond of water we had him walk through (the same pond the other horses peed and crapped in on a regular basis). Dan actually did bite me, but not because he’s ill-tempered.  He was trying to get some hay at breakfast before I could put it in his stall and took a small chunk out of my arm.  You might notice in many of the pictures I’ve shared of Dan out on the course that he’s wearing a Hannibal Lecter-type muzzle.  This was so he wouldn’t be tempted to stuff his face out on the course (didn’t make too much difference in Dan’s case).  Dan was the only horse in the group who needed a muzzle because the first day I was walking with him around the course, he pulled me over while going for grass.

After Fatty McFatButt pulled me down, they had somebody walk with us everywhere (thanks Melody!)

The first day of our horse training, we had to practice walking with our horses and “sending” them over obstacles.  This means having the horse do the obstacle while we stood to the side with a long lead rope.  The best way to send the horse over rocks or through a pond is to hold up the slack of the lead rope with one hand while the other twirls the rope off to the side.  The twirling rope is supposed to motivate the horse and tell it which way you’d like it to go.  I found this to be especially difficult because I could only use one hand.  I tried using my weak hand to hold onto the rope but I kept dropping it.  I think eventually I would have adapted and figured out a workaround to sending the horse with one hand, but it was difficult to be ready for our horse show on Sunday.  

We were all about making our horses do the crap we didn't want to do

Another difficulty was neck reigning Dan.  As I understand it, the two primary ways of steering the horse with reigns are direct reigning and neck reigning.  I would imagine that direct reigning is the easiest for the horse to understand.  If you tug on the right reign, the head of the horse is pulled right and the body follows.  Pulling the left reign achieves the opposite result.  Neck reigning is more challenging and was not one of Dan’s strong suits.  With neck reigning, you simply hold both reigns with one hand and apply gentle pressure to one side of the horse’s neck to convey your intent.  If I want to go right, I move the reigns right, putting light pressure on the left side of my horse’s neck.  Dan—and probably most other horses—required extra motivation for neck reigning in the form of leg pressure.  When I wanted to go left, I moved the reigns left with one hand while squeezing him with my right leg.  Left turns were great, but I had a hard time applying enough pressure with my weak left leg to turn right.  So then, when he wouldn’t immediately go right, I pulled more forcefully to the right.  All this did was pull the left side of his bit, so he would start to turn left, thinking he was being reigned directly.  Sorry if you can’t understand some of these horse concepts (I barely understand them myself).  All you really need to know is that Dan wasn’t so good at going where I told him, and it was likely more my fault than his (you probably figured that out already).

"Turn right, Dan!"

One part about our time at Bolender’s that I especially liked is that we were responsible for all aspects of our horses’ care.  This included cleaning out their stalls, making sure they ate before we did, and grooming them—especially hosing off their legs after they waded through the poop/pee ponds on the course.  Although I was only with him for four full days, I think this responsibility deepened my bond with Dan and gave me a real appreciation for what goes into caring for a horse.

I led Dan right over Melody's foot one day. Sorry about that.

This workshop was less than a week but I learned SO much, not just from walking and riding Dan, but also talking with the other riders and instructors at Bolender’s.  A gentleman from Italy—who teaches mountain trail riding in Europe—was at the farm getting some pointers from Mark.  He was one of our judges on the last day and he gave me some great advice for neck reigning my horse.  Too bad I didn’t get the advice until after the horse show, where I managed to steer Dan into some bushes.

Dan really enjoyed walking me into foliage

Bolender Horse Park is a beautiful place to have these events. Very picturesque part of rural southwest Washington.  I roomed with a 19-year Marine veteran in this tiny cabin:

Actually, I was in the dog house

We had fantastic meals cooked by an Army veteran named Greg.

The Master Chef at work

They had a full kitchen where I could plug up my Vitamix and blend all Greg's awesome food every day.

The Bolender kitchen

I ate Greg's food for breakfast and dinner and two Real Food Blends for lunch throughout my stay.  I never had any trouble blending and the table next to the kitchen was a perfect place to clamp my syringe holder.

Delicious!

I had a really enjoyable experience at this workshop.  I hope they continue doing it every year because I know many veterans will benefit from it!  HUGE THANK YOU to Jayla Neufeld (Greg's wife) for all the stunning pictures!!!!

The forest fires in Washington gave us great sunsets! Otherwise, they were pretty horrible.