Blenderized Diet Forum

This post is for tubies and tubie caregivers ONLY!!! There isn't anybody else reading this, right? Good!! Because those non-tubies are losers!! Always walking around with their smooth stomachs and food in their mouths. "OOOH! I don't have a tube! La De Da!!"

I'm writing this to strongly urge everyone on a blended diet or considering a blended diet to utilize the http://www.foodfortubies.org forum. I know there's a Blenderized Food For Tubies facebook page and people are very good about answering your concerns on facebook. However, it's impossible to search the history of past questions on facebook. So, similar issues end up getting raised over and over. 

Also, whenever you have a question on facebook, you have to post your message, then there's some lag time--sometimes a few minutes and sometimes a few hours--before one of the group administrators posts your question to the general board. Not only that, but facebook is not anonymous. You might think it's anonymous because the group administrators just posts your initials when they share your question. But, it's easy enough to look at Recent Posts by Others and figure out who said what. 

On the forum, however, you can be anonymous. You can create your own username; whatever you want. This way, you can share every aspect of your problems with people who've been in your shoes. You want to talk about drooling or pooping? Go right ahead! Actually, I talk about drooling and pooping here on a public blog so this may not apply to me, but I know there are plenty of others--especially parents of little tubies--who value their anonymity.

You may feel that the forum isn't frequented enough, so your issue may not get the attention it would normally receive on facebook. However, the foodfortubies administrators have assured me that they are making a special effort to stay on the site. They're just waiting for someone to talk to!!

So, please create a username and password on the foodfortubies forum and introduce yourself, so I'm not the only schmuck with an intro!! Also, please let the administrators know how they can make any improvements to the forum. I know they'd love to hear from you!

Sorry, I know this post doesn't have my usual complement of pictures and witty observations. I'm actually in Colorado this week for the Disabled American Veteran Winter Sports Clinic. I'll have plenty more to say about that. For now, here's a picture of me and Adam Sandler.

"Amsterdam"

My oncologist's wife passed away last week in Lompoc, California. Betsy and I were deeply saddened to hear this. I've seen quite a few different doctors over the years, but my oncologist is, by far, my favorite. He is the only doctor I still keep in touch with; the only one I still get medical advice from. His wife had the same type of lymphoma I had. However, her's was at a more advanced stage, meaning she caught it later than I did. I'm not sure where it first manifested, but she required extensive chemotherapy, more than the six treatments I got. Also, she received radiation and a stem cell transplant. The cancer treatment left her debilitated. Although she remained active after her treatment in 1999, her health slowly, but surely, deteriorated. Here's her obituary: http://www.legacy.com/obituaries/newspress/obituary.aspx?n=carol-lynn-lossing&pid=170237437&fhid=13838. 

Carol Lossing: 1944-2014

Carol was always patient and kind to me. We swapped stories of cancer treatment side effects. After Betsy and I moved away from California, I traveled back to Lompoc on business and visited the Lossing's at their home. Carol and I shared a pint of Ben & Jerry's while she listened patiently to my issues with radiation. She was a nurse--one of our noblest professions, in my opinion--who devoted her life to helping ease the suffering of others. She died at 69. Arguably, she led a long life, but I think she died much too soon.

I try to keep this blog light and humorous. I'm a guy who has some complicated health issues and I eat through a feeding tube, but I think I've maintained a pretty good attitude about the whole thing. Yet, in the cancer community and the tubie community (both adults and children), death lurks on the horizon. 

The shortest "novel" ever written--often attributed to Ernest Hemingway, though he is likely not the author--goes like this: "For sale: baby shoes, never worn." A tubie spin on this story (and I read versions of this far too often on tube feeding forums) would be, "Free to a good home: five cases of Pediasure."

I don't have any answers for why some get taken from us far too soon while other, seemingly "less deserving" souls live on despite their unhealthy lifestyles. My only response is a picture of my dog.

This is Aspen. That's his couch.

Like far too many tubie children and cancer patients, Aspen's soul will depart this earth much too soon. Yet, he is happy, he lives in the moment, and he's already made lives around him better purely because of his existence. 

The title of this post refers to a song by Coldplay. Ok, ok, feel free to make fun of me. I'm a closet Coldplay fan. They have a lot of sappy, sad ballads, but I like sappy, sad ballads so suck it! Anyway, "Amsterdam" is one of my favorites. Here's a live version:

http://m.youtube.com/watch?v=Vwf5iRBbilM 

I think they're awesome live.

Here are the lyrics:

Come on, oh my star is fading 

And I swerve out of control

If I, if I'd only waited

I'd not be stuck here in this hole 

Come here, oh my star is fading

And I swerve out of control

And I swear, I waited and waited

I've got to get out of this hole

But time is on your side, its on your side, now

Not pushing you down, and all around

It's no cause for concern

Come on, oh my star is fading

And I see no chance of release

And I know I'm dead on the surface

But I am screaming underneath

And time is on your side, its on your side, now

Not pushing you down, and all around

No it's no cause for concern

Stuck on the end of this ball and chain

And I'm on my way back down again

Stood on the edge, tied to the noose

Sick to the stomach

You can say what you mean

But it won't change a thing

I'm sick of the secrets

Stood on the edge, tied to the noose

And you came along and you cut me loose

You came along and you cut me loose

A lot of people interpret this song as being about someone stuck in a dead-end relationship or addicted to drugs. I look at it more like a cancer survivor and tubie. I think it's about someone at the end of their life lamenting regrets and lost opportunities warning the listener that, "time is on your side."

Carol Lossing lived to see her children grow up and she got to spend precious time with three grandchildren. Still, she was taken from us too soon, just as adolescent cancer victims are taken far too soon. My only consolation is that she made the world a better place. She taught us all to appreciate the time granted us. Small consolation, but it's all I've got.

My Advocate

I'm sure there have been studies done on the importance of having a friend or family member at your side when you're in surgery or staying at the hospital with a serious illness. I casually searched the internet and couldn't find one, but it's not hard to find stories of people who die in the ER. I remember a story maybe two years ago about a woman who showed up on an especially busy night at the ER. She was unable to tell the doctors or nurses how to get in touch with her friends and family. All the available rooms were full, so they had to keep her in a bed out in the hallway. The hospital staff got caught up with other cases and at some point she passed away during the night. You've all heard stories similar to this.

I've seen how vital it is to have a loved one with you. There have been so many times when I'm still groggy from anesthesia or pain medications and I've needed someone there to make decisions on my behalf. Honestly, I don't know how adults with bad medical problems can get by on their own.

My last jaw surgery in 2009 (when I lost the ability to swallow) was in Denver. As usual, Betsy stayed in the waiting room until the doctors were done with me--she refuses to leave the hospital during all my surgeries, even the 12+ hour ones.

She almost passed out when she saw me after this 13 hour surgery in 2008

My friend, Dave (attending medical school there) kept Betsy company. I have no memory of when I woke up. I was on a lot of pain medication, but Betsy and Dave tell me I was in a jovial mood. I had a breathing tube down my throat so I couldn't speak but I was smiling and making jokes by writing on a white board. After spending a few hours with me, Betsy felt comfortable enough to leave to take care of our infant daughter and get some rest. When I finally came down off my medication-induced high, there were no familiar faces to greet me. I thought surgery had just ended. The breathing tube was still there and I couldn't get my nurse to understand that I was confused about the day/time and why my wife was gone. I was in quite a bit of pain and extremely depressed the entire night. 

That night was a taste of how my medical treatment would be without Betsy by my side. It wasn't pleasant. 

A couple weeks ago, I drove to Augusta, Georgia, to visit the VA hospital for my annual exam at their Spinal Cord Injury Clinic. The drive is about 6 hours. Betsy couldn't go because it was the middle of the week and she had to work. It was exponentially more difficult to drive down, find the hotel, eat meals, find the hospital, sit through multiple examinations and tests, and drive home all by myself. 

Takes me about 12 seconds to completely mess up my hotel room when I'm alone

Lonely tubie selfie from my Augusta hotel

I don't know how she does it, but Betsy is an expert at getting exactly what I need from doctors. Here's an example of me calling up my GI doctor's office to get an appointment to get my feeding tube changed:

"Dr. Spaceman's office," the receptionist pleasantly greets. I call him Dr. Spaceman--pronounced "spah-cheh-men"--because he looks exactly like the doctor played by Chris Parnell on the show "30 Rock." You be the judge:

http://m.youtube.com/watch?v=CsBXmHnb4qs

The doppelganger: Dr. Leo Spaceman

GI Doctor Charles O'Connor. The resemblance is uncanny

"Yes, hi, I'm a patient of Dr. Spaceman's," I greet pleasantly. "The balloon on my feeding tube has burst and I'd like to schedule an appointment to get a new G tube."

"OK, Dr. Spaceman has an opening on the 20th. I can fit you in at 9:00."

"This Thursday? That would be great!" I exclaim.

The receptionist just laughs, "Ha Ha! Oh no no, sir! I can't possibly get you in that soon! I meant two months from now, May 20th. It's on a Tuesday."

"But my balloon is deflated!" I desperately cry. "My tube is literally falling out! How will I eat??"

"I'm sorry, sir, there are far too many more important patients with a 'tummy ache' who need to be seen immediately. If it's an emergency, you'll have to go to the ER."

So, that didn't go so well. Let's look at how that same conversation would go if Betsy was the one talking to Dr. Spaceman's office:

"Dr. Spaceman's office."

"Yes, hi, my husband's feeding tube is broken and he needs to get it changed."

"Yes ma'am!" the receptionist exclaims obsequiously. "I can get him in this afternoon!"

"We can't wait that long," Betsy protests. "Do you have anything earlier?"

"Well, one of his patients is passing a baseball-sized kidney stone and an alien just burst out of another patient's large intestine, but your situation sounds much more serious!! How about if Dr. Spaceman skips that other stuff and visits you at home to change your husband's tube?"

"I guess that will be ok," she grudgingly concedes. "Just tell him to hurry."

"Yes, ma'am! Right away, ma'am! Don't worry about the bill! We'll cover this one."

All right, I'm exaggerating a little, but Betsy really knows how to get things done. How could I possibly get by without her?? She makes most calls to doctors' offices. She keeps my appointments straight. She organizes my medications. She accompanies me for every hospital procedure. Betsy always says that I'm the perfect patient, and I would be just fine without her, but I'm pretty sure I'd be balled up in the fetal position if she wasn't around.

In short, on February 2, 2002, I saved my life. That was the day (I know, it's 2-2-2) I married my lovely bride, and I've come to believe that everyone with a serious illness or injury needs an advocate to survive the medical system. In 2002, I didn't know what our future held, but less than two years after our wedding day, I was diagnosed with lymphoma.

She even stuck with me when I was fat

Drugs

Our family has a Nintendo Wii game console and we have a game called Wii Fit. When you first start the game, it asks for your age and height, then it weighs you on a board that you can buy for the console and you go through some balance exercises. The purpose of this is to determine your "Wii Fit Age" to see if you're at your ideal level of fitness. If you've seen pictures of me on this blog, you'll know I'm not an obese person. It's true that I have some balance problems, but I figured my "Wii Fit Age" wouldn't be too bad compared to my actual age (I'm in my 30s). So after going through the balance tests and answering the questions, do you know what my "Wii Fit Age" is? 

85.

Eighty.

Five.

So, I think the Wii is really concerned about me now. Whenever Grace plays the game, it asks her when I'll be exercising again. I think if it had the ability, it would have called the paramedics or put me in a rest home. This is part of the reason why I really identify with old people these days. I'm an 85 year-old stuck in a 39 year-old's body. Everybody else in my family is all about keeping active and always being up and moving. Not me though. I'd be perfectly content doing nothing. Whenever I visit my grandparents at their retirement home in North Carolina, I love sitting with them reading the newspaper (did you finish the crossword?), reading books, playing Bridge, hearing their stories, and watching Wheel of Fortune and Jeopardy every night.

Jeopardy categories are really hard sometimes

I also love chatting with their neighbors and comparing notes on our various infirmities. 

We talk about doing water aerobics. "I can't stand it when they make the water too cold!! I don't know about you but it needs to be like bath water for me."

We talk about our balance problems. "Ooooh, I love your cane! Check mine out! Got it from my father-in-law!!"

I can discuss hearing issues. "Yep, my hearing is a little bad. I don't need a hearing aid yet, but I've got that ringing in my ear too."

We can gab about hospital stays. "I've been to ERs in San Antonio, Knoxville, Lompoc, Birmingham, Nashville, Denver, Colorado Springs, Los Angeles, and New York. My favorite hospital would have to be Vanderbilt. Least favorite? Birmingham. They wouldn't even give me a pillow in the ER!"

And I can talk endlessly about drugs. 

Obligatory Ferris Bueller Clip 

http://m.youtube.com/watch?v=fCkTVESc0fQ

I could compare notes on blood thinners:  "How do you like coumadin vs. heparin?" 

Pain meds: "Yeah, I tried it all because nothing really worked. Percocet, vicodin, shot glasses of morphine, pain patches; they even gave me narcotic "pain suckers" when I went through radiation. If I had teenage kids, that would be a great thing to have around the house." (Note to any addicts reading this blog: I don't have any narcotics now, so please don't break into my house looking for drugs.)

Steroids; I've got a lot of stories about steroids. prednisone vs. decadron. I was on the max dosage of decadron (24 mg a day) and got so sick of it, I decided to quit taking it all at once without my doctor's knowledge. I soon discovered that quitting steroids without gradually tapering off them is a good way to get yourself killed. Steroids made me so moody, I used to cry during sappy Hallmark commercials. I was on wellbutrin to deal with depression from the steroids. Then, the wellbutrin caused me to have a grand mal seizure in front of my wife and sister-in-law. I was also taking stool softeners, laxatives, and eating as much fiber as possible because the steroids made me extremely constipated. My constipation got so bad that I developed hemorrhoids so I can talk to elderly people about that too. Plus, the steroids made me think about food. Nothing but food. I woke up wanting to eat and the craving never stopped. I gained sixty pounds and got stretch marks all over my stomach that never went away (so I guess I can talk to women about pregnancy stretch marks too. Yea for me).

Damn you and your corny commercials!!!

I'm comfortable discussing nausea meds (zofran vs. phenergan; IV vs. oral). 

I can talk crazy side effects (reglan and haldol give me panic attacks). 

I can share my opinion on sleeping drugs (I saw a million tiny bugs on my sheets after a particularly high dose of ambien; I never felt very rested after nyquil; melatonin works but not if I take it every day; valium or ativan are ok for sleep, though that's not necessarily how they're intended; really the best medicine for me to get to sleep is tylenol and listening to classical music).

Do you want to ask me about reflux? (Apple cider vinegar is great if you have slow motility; nexium always clogs up my tube; tums never worked for me; I think lemon alka seltzer tastes pretty good; perforated ulcers are loads of fun and now I have enough carafate to drown in the stuff).

How about Eczema? I've tried all types of steroid creams. Triamcinolone cream works great.

Medical marijuana? Never smoked it but after radiation made me lose a bunch of weight I was prescribed a THC pill called marinol to give me the "munchies." Not only did this drug not make me eat more, they made my mouth and throat so dry that I vomited for 30 minutes and felt miserable. The doctor said this is a very rare side effect of THC and "maybe if you smoked marijuana as a kid, your body would be more adapted to THC and wouldn't have had this reaction." So, THANKS A LOT, MOM, FOR KEEPING ME OFF DRUGS! Kids, please don't use this as an excuse to smoke marijuana. It's a "very, very rare" side effect.

I swear the label on mine said something like, "WARNING: MAY CAUSE EXTREME HAPPINESS"

Antibiotics. I've had bacterial meningitis, MRSA in my brain, and multiple bouts of pneumonia so I've had every type of antibiotic out there; IV antibiotics, antibiotic capsules, tablets, liquids and direct shots of antibiotics in my ass.

Constipation meds. Metamucil, miralax; having your wife administer dulcolax suppositories has been the best part of our marriage!

Supplements. You want to talk vitamins? I'm a bit of an expert on B, C, D, E, and K. Or, we could debate the merits of iron, calcium, magnesium, fish oil, probiotics, and low dose aspirin.

There are still plenty of drugs I haven't been prescribed--and I'm thankful for that--but I bet I can comfortably speak with your grandparents about most of the meds they're on right now. A little over a decade ago, the craziest drug I ever took was motrin (or "vitamin M" as we called it in the military). Now, I need pill cases and bring excel spreadsheets to doctor's appointments to keep track of the drugs I'm on. Target pharmacy loves me so much as a customer, that I get gift baskets for my loyalty. This is what I'm on right now and this is actually much less than what I've taken in the past:

I just ignore the drug interaction warnings. Is that wise?

So yeah. I'm an old, old man. 

Wait...did I take my neurontin this morning?

Guilty Pleasures

Betsy and I love to watch cooking competition shows. Before I stopped getting cable we used to watch every season of Top Chef. We were constantly amazed by the intricate dishes the chefs could create. I've learned so many different dishes and ways to cook dishes that I never would have otherwise.

If you're contemplating entering one of these competitions, I recommend learning how to cook risotto and scallops. I think every other dish on any show I've watched is scallops. Confession: I've never had a scallop in my life. Nor have I had risotto. I think I could do a lengthy post just ranking the shows from worst to best (Food Network Star, Hell's Kitchen, Top Chef Masters, Top Chef, The Taste, in that order). Instead, I just want to talk about guilty pleasures.

"Hell's Kitchen: Watch chefs on a smoke break or get screamed at by this guy!"

Every cooking competition has an episode devoted to cooking guilty pleasures. Oh, how I miss them sometimes. You know guilty pleasures? Those things we secretly love to binge on? The vast majority of guilty pleasure dishes cooked during those episodes seems to be foie gras and/or caviar. Do you know what foie gras is, or am I the only ignorant moron who thought it was the French way of saying "frog legs?" 

Foie Gras?

Just me? 

Ok, I was kidding earlier. Any idiot knows what foie gras is. I had foie gras at least once a week growing up; sometimes for breakfast, lunch and dinner. I wrote the book on foie gras. Then I force-fed the book to geese and consumed their livers, thereby eating the book in foie gras form. Seriously, did you know foie gras is fatty goose liver from geese that have been force-fed? Is that why it's a guilty pleasure?

"Oh, this liver is SO good!! I've almost forgotten the hell-on-earth the goose was subjected to before it was slaughtered!!"

Actually I guess you could call many meat dishes here in the U.S. guilty pleasures, given the way livestock is treated in this country. I'm not a vegetarian, but watch any video or documentary of the meat and dairy industry and you definitely feel some guilt about that steak you had last night for dinner.

But anyway, I didn't want this post to be a diatribe against food production in America or my critique on reality cooking shows. I actually want to talk about my own guilty pleasures. My problem is that I love whatever it is too much and I end up eating or drinking so much of it that I get sick to the point where I can't have it ever again. I guess I've had a few different guilty pleasures over the years that now make me nauseous. 

When I went through basic training, my father sent me a box full of brownies every week. Not brownies one week, then cookies, then trail mix, then cake. No variety. Just brownies. Like anyone else, I loved brownies. I was also very mindful of the obesity epidemic here in America and I didn't want my comrades eating anything unhealthy. So, I "took one for the team" and consumed all the brownies myself (my roommate may have gotten a few out of me). Yep, I ate the whole batch of brownies that week. Then the next week. Then the following week. Then ("Is he really STILL sending me brownies??") the week after that. By this point, I couldn't look at another brownie. I'm probably the only guy in basic training who came to dread getting care packages. I finally had to break it to my dad, "Look, I know you mean well, and brownies are apparently the only thing you know how to make, but could you please stop??" To this day, brownies make me a little sick to my stomach.

Sure they look good now, but how about after you've eaten a million of them?

Another guilty pleasure I've ruined is gin and tonic. I had a friend at the Academy who used to order a gin and tonic whenever we went out to bars. "Whoa," I thought, "This guy is so sophisticated!!" No Jaegermeister shots, Jack & Coke, or screwdrivers like the rest of us unpolished slobs. He gets gin and tonic!! How classy is that?? Gin and tonic became my drink of choice. I got to where I could distinguish between Tanqueray (classy) and Beefeater (what the peasants drink) gin. I used to buy fresh limes and have a slice with one or two glasses every night after I graduated. Then, apparently, my body had enough gin and tonic and I got nauseous every time I had a glass; even a few sips of a glass. Sadly, my days of looking like a distinguished Englishman were over and I was back to 40's of Nattie Light like a common oaf.

Only the finest for me. My dog drinks Beefeaters.

More recently, my guilty pleasure has been coffee. Specifically, Starbucks coffee. I have acid reflux, so I've never been able to overdo coffee. Way too much acidity in my stomach. But two or three times a week, my treat to myself has been to ride my trike less than a mile to Starbucks where I order a "Tall" coffee (why the hell can't Starbucks just do "small," "medium," and "large" like everybody else?? Now I sound like a chauvinist pig every time I order a "Tall Blonde"). 

Selfie at the closest Starbucks in Knoxville

Then, even better, Betsy' friend's husband works for the company that makes the Keurig and he got us a great deal on one. Our Keurig is now my favorite thing in the whole house. Now, I can stick a K-cup into the Keurig and a few seconds later I've got a perfect portion of my Starbucks Blonde Roast coffee.

The greatest invention since cheesecake

Then, disaster. A few weeks ago, I got really nauseous with severe abdominal pain the day I had one of my cups of coffee. Right away, my GI put me on Carafate (I'm already taking Prevacid) and, even worse, all consumption of coffee ceased while I tried to figure out what was wrong. I thought it was another ulcer. I had one a couple years ago and it felt similar to this, but after putting a scope in my stomach and looking around, my GI saw no evidence of any ulcers. An ultrasound of my liver came out fine; a test of my gall bladder was normal. I still have no idea what the problem is. All I know is that drinking coffee makes it worse.

I broke down and got some Folgers Simply Smooth coffee for sensitive stomachs a couple days ago. I told Betsy about it, and she just laughed at me. How have I sunk so low in life, to be reduced to drinking Folgers?? I was on my way to being a gourmet aficionado with my Starbucks roasts. Now it's like I'm living in the 1950s. My Simply Smooth Folgers smells like used Starbucks coffee left in the sun for two weeks. 

Oh, The Humanity!!

Am I being a little whiny and petulant because I can't drink the coffee I want? Maybe. I'll admit, I have a lot to be thankful for. When I focus so much on the things I can't do, I tend to lose sight of the things I can. But, can't I have one guilty pleasure?? I used to really like the Bonzai Burgers at Red Robin. Then radiation treatment made it hard to open my mouth very far and I had to give those up. They're hard enough to eat when you can fully open your jaw. Every time I visited a mall, I used to get cookies from The Cookie Factory. Aren't their cookies soft, gooey, and awesome? Now, I can't eat gluten anymore so those are out. No more brownies or gin & tonics. I can't even taste that stuff anymore. Hell, I can't taste coffee for that matter. So, why can't I enjoy a nice cup of coffee in my tube twice a week? It's not like my guilty pleasure is smoking, or gambling, or doing hard drugs. I've never done that stuff; I'm a pretty straight-laced dude.

So, as a continuation of my series on things I want right now, I'd really like to sit down in a coffee shop with a good book and enjoy a cup of coffee. No sugar. Lots of cream. Is that too much to ask?

I'll have mine with a bowl of applesauce