Monday, April 3, 2017


I've been kind of addicted to You know, that site where you can build your family tree and research your ancestors, find distant cousins, discover whether anyone in your family owned slaves (yes, there are slave owners in my past, much to my shame), that sort of stuff. It gets addictive because for every relative, Ancestry gives you 'hints' that you can use like a birth certificate, census record, marriage record, or obituary that brings up more names to add to the family tree. "On May 27, 1880, Jane Doe married John Doe. Her parents are listed as William Tyler and Beatrice Grooms." OOOHHH! I didn't have their names! Let me add that to the tree! Oh, wait now there are 5 hints listed for Beatrice Grooms that point to siblings and more parents and each of those siblings was married and had 20 children. Pretty soon, the tree expands to enormous proportions when all you really set out to do was find out who your great great grandmother was. My tree has about 350 names now and I have to force myself to quit. The vast majority of names are on my father's side, because I was researching my grandparents' backgrounds a few years ago. I've also got some names on my mom's side and even Betsy's. I can see how people could just sit and spend hours at this, writing little backgrounds and timelines for each person on their tree. I've found distant cousins who spend a lot more time at this than I do. One cousin has traced our lineage all the way back to William Shakespeare. That's on my paternal grandfather's side. On my paternal grandmother's side, I'm a distant relative of President John Tyler, who is well known as being one of the worst Presidents in American history (yay!).

The resemblance is uncanny

All these names on Ancestry have highlighted for me what a short little blip our lives are. My great grandfather, William F. Liebenow III was born in 1882 in Wisconsin to parents who had just immigrated from Germany. All his older siblings were born in Germany. William went to a small college near Madison, joined a threshing crew that took him up the east coast until he found himself in Fredericksburg, Virginia. There, he started working for a lumber company. He fell in love with the owner's daughter, Mary Eastburn, they got married (despite the wishes of Mary's mother, who hated 'Yankees'), and had five children, one of whom was my grandfather. In another generation, William III will be just another name on a family tree. Even the limited background I know will be lost. All of my grandfather's siblings have passed away. One of his older sisters died as a child. The other two older sisters died childless about ten years ago. His younger brother, Uncle Pilly, died a few years ago. Uncle Pilly had two sons who are still alive, but they had no children. My grandfather had three grandchildren. Only my sister and I are left. In late February, much to my sorrow, my grandfather died at the age of 97. It seems there is no one left to tell their stories, and in a couple more generations, we will all just be names on a family tree with a year of birth and a year of death. Maybe a few additional notes if we're lucky.

This post took a dark turn, didn't it?

I wanted to share some thoughts I had about my grandfather.

For the first few years of his life, he lived in a farm house with his maternal grandmother. The house had no electricity or indoor plumbing. His grandmother had an African American woman who worked for her who was born a slave until she was freed after the Civil War as a teenager. The family called the woman "Aunt Susan." My grandfather followed Aunt Susan everywhere and she adored her little 'shadow' so much, she called him her 'buddy.' The name stuck, and from then on, grandpa was known as Buddy or Bud.

Bud was a hard worker, and he learned it at a young age. Times were tight during the Great Depression for the Liebenow's. Everyone was expected to earn money, since William's lumber job wasn't paying enough to cover all the bills. Bud had his first job when he was nine, selling three different magazines door-to-door, making as little as 1.5 cents for each magazine sold. From then on, Bud had a job, from working on a dairy farm, to running a paper route, to driving a lumber truck. He even had a short job distributing bootleg liqueur with some other kids during Prohibition. He remembered that one of his customers was an Episcopal minister who insisted that the alcohol be delivered through a back alley so no one would see it. Though life was hard during those years (a typical Christmas present was an orange), there was always food on the table and there were daily visits from denizens of the town's 'hobo jungle' looking for handouts to remind the family that things could always be worse.

My grandfather was tough and fearless. There was an older bully in school who "took a shine" to Bud. He led Bud up to other kids and said, "hit him," forcing grandpa to hit the other boy and start a fight. Bud recalled one fight on the playground when he knocked the other kid's head back so hard, it broke the glasses of another boy watching the fight.

Image of grandpa's first school in 1925

Bud was a boxer from high school through his years fighting in the war. He was known by fellow navy soldiers as "the fighting fool." This wasn't just for his boxing reputation, but for his fearlessness during combat. 

Relaxing during some downtime

On one occasion, Bud's PT 157 was escorting a Marine landing craft to a beachhead in the South Pacific when they came under attack by Japanese dive bombers. Bud quickly had his crew steer their own 80 foot, plywood PT boat away from the landing craft to draw the enemy fire away from the Marines. On another occasion, Bud's PT boat got caught between two destroyers on a dark, moonless night. They came under blistering crossfire, putting more than 50 holes along the side of their boat but miraculously, no one was hurt. The destroyers both turned because it was too dark to pinpoint the PT boat's location. Bud used the brief lull in the action to check on his crew. They discovered that one of their three engines was completely dead from enemy fire and the mechanic had to coax a second engine back to life after severe damage. Despite the damage to his ship, Bud turned the boat around, sped toward one of the retreating destroyers and scored a hit with one of his torpedoes. He was awarded the silver star for his actions that night.

Grandpa's in shorts, 8th from the left

After rescuing Kennedy and the crew of the PT 109 (see my blog post about it if you want his account of that night), Bud was reassigned to the European theater, where he made numerous covert runs to Normandy Beach before D-Day. On these missions, his PT 199 would pull in close to the beach and Bud and another crewman would quietly row a small dinghy to shore to get soil samples, or meet with French resistance operatives under the noses of German sentries. On D-Day, my grandfather's PT 199 escorted gun ships close to shore so they could fire on German batteries. During the invasion, the allied destroyer USS Corry struck a mine and simultaneously came under heavy fire from German artillery. The Corry sunk and Bud's PT 199 picked up more than 60 survivors during a constant barrage from the Nazi defenses. He was awarded the bronze star for his actions on D-Day.

Bud, at left, on PT 199

Grandpa epitomized the ideal of the 'Citizen Soldier.' He detested the peacetime Navy, constantly having to wear a uniform, with good sailors getting chewed out for minor rule infractions. He left the service, turned his back on war and became a railroad chemist. Other than his 1960 campaign support at various rallies in Michigan for the man he shared a tent with in the South Pacific, and his attendance at JFK's inauguration, Bud stayed out of the spotlight. He lived a quiet life with the woman who helped him through physics class when he was a senior back at Randolph Macon (my grandmother was only a freshman; she's kinda smart). They raised a daughter and son (my father). 

Showing off his first born son, 1946

My dad and Aunt Susan, sledding with their dad at their Michigan home, ~1953

After 30 years working for the railroad, the couple bought a small house on a golf course on North Carolina's Abemarle Sound. I grew up 30 minutes away, where my father worked at a paper mill. I have so many good memories of my grandparents' house on the water. Fishing with grandpa; checking the crab pots; playing tennis down the street, my complete lack of skill at golf, lazy days laying on their hammock, so many fantastic meals, courtesy of Grammy. 

Who is that adorable boy playing with his grandpa?

Compared to Grandpa's young life, mine was so privileged and I have him to thank for that.

I have such admiration for Bud Liebenow. His courage. His quiet modesty about his past. The love he had for his wife of nearly 75 years. 

Dancing at my wedding in 2002

The life lessons he taught me growing up on everything from how to sail a boat, to civic engagement are priceless to me. In the end, Bud Liebenow is a pair of dates on the family tree, 1920-2017. But like the rest of his generation, he witnessed so many changes, hardship and tumultuous days. The Great Depression, World War II, the Kennedy assassination, the moon landing, seeing a son through two tours in Vietnam, Watergate, losing a grandson to cancer, 9/11, technological changes from commercial flight to smart phones. He met all challenges with quiet fortitude. Like any boxer, when he suffered setbacks, he picked himself up and kept fighting. We all lost something the day this man died.

Grace's favorite photo of grandpa

Bud and Lucy, March 2016

Tuesday, March 21, 2017

I did a blog! (Not here though)

I thought you should know, if you don't follow me on facebook, I did a blog post about my trip to Germany in December 2015. It's actually a guest post on the blog site (here's the link: 

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

That's all I wanted to say. I'm working on a blog post that has nothing to do with tube feeding. It's about my grandfather, who passed away at the end of February. It's been very hard for me to write because he was such a huge presence in my life, and I don't know how to express this loss. Still processing it, I guess. In the meantime, here's a nice obituary from the New York Times:

Thursday, January 12, 2017

Disney, Take 2

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

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

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

I wear that hat every day

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

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

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

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

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

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

Fun fact: Butterbeer is 15% butter by volume

I have the Dumbledore wand, Grace has Hermione's

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

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

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

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

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

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

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

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

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

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

Chef Nathan at the Coral Reef

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

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

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

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

Love these kids


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

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

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

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

Monday, December 12, 2016

Rest in Peace

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

So, I had a drink for Mike Rich tonight.

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

Here's his obituary from Elon, which has a short video in which he talks about his work:

Here's the obituary from his local paper:

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

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

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

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

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

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

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

Rest in Peace, Michael Rich.

Sunday, November 13, 2016


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

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

So, anyway, the arm is amputated.




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

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

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

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

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

Still adjusting to life with one limb.

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

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

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

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

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

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

Soon, I'll have my own hook hand!

Thursday, September 1, 2016


My arm is getting amputated next Wednesday, along with my clavicle and a few ribs.

This is how I'll say I lost it

I'm still trying to process this and it likely won't really become "real" until the arm is gone. If you've been reading my posts, then you'll know that I got a bad sunburn in March of last year. It blistered up and never fully healed. Then, this past January, my wound Doctor did a biopsy and found skin cancer. The skin cancer was removed and a graft was placed over the wound, but the graft didn't really take because that area of my skin has such poor blood flow. So, I've been dealing with the wound since the surgery in February. I've been doing daily hyperbaric treatments, and Betsy religiously changes my dressing every day, but the wound got infected and now there is some bone exposed and a nifty little hole right next to the bone. Since the exposed bone has shown no signs of healing, I will continue to get infections there whenever I'm off antibiotics. Furthermore, the infections have moved into my clavicle bone and likely a few ribs (not sure if the ribs are infected, or dead because of radiation damage, but it amounts to the same thing). 

With an ongoing bone infection that will continue because of radiation damage to my shoulder, the doctors at Vanderbilt recommend that I get the offending bones removed. Why the arm? My arm is in constant pain (not severe pain, but it's always there) because of nerve damage to my shoulder and because my shoulder doesn't have the musculature to hold the arm bone up. So, it's partially out of joint, a condition called subluxation. If my clavicle is removed, then the arm will lose even more support and would hang down even further out of joint. This would increase my pain and decrease my quality of life. Since I don't use the arm much anyway, it would be better if I just get the arm removed. I got a second opinion at Emory University Hospital in Atlanta a couple weeks ago, and the doctor there concurred with Vanderbilt that my arm will need to be removed. Even if they don't take the arm off and my pain doesn't immediately increase, I'll be set up for further problems down the road. Better to be aggressive and amputate now. 

My life since radiation has been this slow deterioration of my body. I remember freaking out because I couldn't open my jaw as far as I used to be able to, then panicking at the ringing in my ears. Then, my right foot couldn't feel when I stepped into an icy creek and I thought it was the end of the world. Then I had this crazy nerve pain in my feet where it felt like my toenails were being pulled out. Then the paralysis started and I couldn't type at work as fast, couldn't run as fast. Then couldn't type or run at all. Lost dexterity to tie my shoes then couldn't lift my left arm to drive. Then I couldn't eat solids; then I couldn't swallow. Now, I contemplate the loss of my arm and fondly remember the days when not being able to fully open my mouth was a big deal.

Settle down, ladies...he's taken

The problem with my radiation damage is that it is this insidious progression where each little diminishment of my abilities is "bad, but not too bad," because it's really not much different from the way I was a week ago. Getting my arm amputated sounds like a horrible thing to you, but from my standpoint, how different is it really from the way I am now? I already can't use that arm. I have to constantly lift or adjust it with my right hand so it's not flopping around too much. I have very little feeling in it, other than burning nerve pain. So what's the big deal? I'm basically one-armed already. I feel like one of those 90 year-old guys you meet at a rest home who laments the vigor of his youth. But I'm 41, so it's happened a little sooner than it was supposed to. This is just one more thing I'll have to deal with and move on, hopefully with a long break before the next thing; preferably after Grace graduates high school.

But still...losing an arm...losing a limb...that's kind of a big deal. I can't really wrap my head around it yet, and I don't think it'll really hit me until after. Isn't there a song lyric along those lines? "Don't know what you've got til it's gone." That's been the way I am through all this. I could always skate through military fitness tests without working out. I did a 20 minute 5k as a casual runner. Push-ups, pull-ups, no sweat. I didn't have to work for anything, train for anything. Then I woke up and that stuff wasn't so easy, then it was impossible. So, yeah, losing my arm is not such a traumatic thing because I can't yet appreciate how fucking shitty it'll be to have one arm. 

I cringe at the sight of my body, but we had to get some "before" shots

I guess the main thing I'm worried about right now is the surgery itself. It sounds like it'll be a long surgery with at least three different surgeons working on me: orthopedic to take the clavicle, shoulder and arm; thoracic to take the ribs; and plastic to sew everything up. My surgery in 2009 to try to fix my radiation-damaged jaw required two surgeons and that was about the worst surgery I can recall (though at 7 hours, it wasn't as long as a 12 hour surgery I had in Texas). I woke up from surgery in 2009 unable to swallow, with a bar where my jaw bone should be. I'm worried about waking up from surgery this time much worse than expected due to some unforeseen complication. I'm dreading how long it will take to recover from such a long surgery. It wasn't so long ago I was proud about my progress at Crossfit and my brother-in-law got me into a Crossfit coaches course. But, then I had to cancel the course and who knows when I'll get back to doing workouts? It's just frustrating to take a step forward, then have my fragile health force me back two steps. I'm nothing if not stupidly stubborn though, so I'm sure I'll get back to hiking, snowboarding, and Crossfit after this upcoming hospital stay!! Also, on the bright side, only having one arm enables me to get out of even more chores around the house!!

Sunday, June 26, 2016

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

I changed my feeding tube by myself!!!

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

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

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

I'm sure you have questions like:

"How did you do it?"

"Is this something I can do alone?"

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

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

Let's take this step by step:

Prepare a sanitary space for the operation

It helps if you haven't showered in weeks

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

Note the clean washcloth for catching stomach contents 

See how happy we look before the pain and horror?

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

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

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

Feeding Tube Rainbow

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

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

My own spotlessly clean tube, complete with balloon access port

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

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

Prepare the new tube for insertion.

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

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

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

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

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

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

Insert the new tube and inflate the balloon

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

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

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

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

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