Category: Fuck Cancer

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It’s now been 9 months since I was last able to swallow everything normally. While I initially balked at the thought of a g-tube when it was presented to me before my surgery last August, I reluctantly agreed “just in case.” (Actually, my surgeon said, “This is going to happen.”)

I’m glad it was done. My swallowing hasn’t been ideal for years from late-stage complications of the scar tissue (something no one ever warns you about) stemming from the radiation treatments for my other cancer back in 2004. I was occasionally aspirating, but also managing it well enough that during all that time I had only one incident of pneumonia that required a hospital stay. I’ve had two in the last 2 months, both times stemming from occasions when I actually did try to eat and swallow. I think I’ve learned my lesson.

My swallow therapist has been wonderful, but after deciding to give it one more try after an agreed-upon break for a few months, I think I’m ready to throw in the towel. Considering that last week some of a single bite of food that I chewed (to get the direct taste) and spit out, still managed to find its way down my windpipe—and this tells me it’s time to give up trying. The situation isn’t improving, isn’t ideal, but as Ben says, “It is what it is.”

I have learned several things over the past few months in the event that—the gods forbid—any of you find yourself in a similar situation. I’ll probably be adding to this list during the day as things come to me, but at least I can pass on my initial tips and tricks.

One thing no one really prepares you for is the utter lifestyle change that tube feeding brings. You don’t realize how much eating is part of the social fabric of our society, and being tied to a g-tube negates all that socializing (unless you’re willing and happy to just sit at a table and watch everyone else eat and drink; I am not). Weekend lunches out together and nightly dinners were a source of joy and one of the few times that Ben and I could just sit together and unwind from the day, sharing thoughts, experiences, and frustrations. Ben can still cook for us both (something he loves to do), but mine needs to be pureed so it will go through the tube. We still eat at the same time, but since the g-tube can be messy with “real” food, it’s best done standing at the kitchen counter while Ben sits at the dining room table. Not exactly conducive to sharing. We still occasionally go out to eat, but I always get my meal to go so I can take it home and puree the fuck out of it (see below).

Now, some tips, in no particular order:

• • If you’re stuck with the tube for more than a short period, get a Ninja. It will allow you to reintroduce “real” food to your diet unless you’re happy with the same Nestle Isosource formula day in and day out.
  • I supplement the prescribed formula with Premier Protein and Boost High Calorie energy shakes.
  • Soups are good for enteral feeding and a good gateway back into “real” food. They’ll still need to be pureed but the first time that tomato bisque hit my stomach it was a little slice of heaven.
  • That got me thinking. If I can do soups, why not other food? Over the past nine months I’ve learned that pretty much anything can be pureed for tube feeding. I’ve done everything from fish ‘n chips to cheeseburgers and fries to steak ‘n shrimp to chicken Caesar salad. The key is to making this work is to use enough water to thin down the mixture to a consistency where it will easily go through the tube—often dramatically increasing the volume you’ll ask your stomach to hold. (Try to push pizza through a 3mm hole and you get the idea.) I’ve learned that starchy foods (potatoes, bread, pasta, rice)—no matter the consistency—can still be problematic and will destroy your syringe after one meal.
  • Flush, flush, flush. Cleanliness is next to godliness as they say. After you inject, always follow with at least one syringe of clear water to clear everything out of the tube and prevent any blockages at the connection to the mic-key. There’s apparently a valve inside there that prevents stomach contents from coming out when the tube is disconnected that needs to remain clean to function correctly.
  • There are many brands of enteral syringes available, so if you can, get the ones that can be cleaned and reused multiple times. Unfortunately, the company that supplies mine only carries the Vesco brand, which are cheap and good for maybe two or three uses (even with thorough cleaning) before they become unusable. When I was in the hospital I noticed they use the Monoject brand that keeps going, and going, and going, but unfortunately, my supplier doesn’t carry them nor can they be purchased through Amazon (unlike the Vesco brand).
  • Verify that all your medications are crushable. If they aren’t, ask your doctor for crushable or liquid versions. I haven’t had to deal with requesting crushable prescription meds since everything I’m on can be crushed, but OTC items required a bit of sleuthing. Most OTC meds are available in various formats. If they aren’t carried at your local pharmacy, Amazon comes to the rescue again.
  • Along those lines, after struggling for days after coming home from my initial surgery in August with a manual, plastic twisty-type pill crusher, I said, “Fuck it. There’s got to be a better way.” That’s when I discovered an electric pill crusher that makes short order of pulverizing my meds.  It’s just a repurposed coffee grinder, and frankly if you’d rather use one of those it would work just as well. (If my pill crusher ever gives out I’ll just get the coffee grinder; they’re about the same cost and the coffee grinder is better looking.)
  • Hydrate, hydrate, hydrate. One thing that’s often overlooked is keeping properly hydrated. To this day I still struggle because it’s just not something I think about, and I don’t get thirsty (or hungry, for that matter) the way I used to. My morning routine consists of 16 oz. of filtered tap water followed by another 12 oz. or so of iced vanilla latte. (You didn’t seriously think I’d give up coffee, did you?!) I follow that up throughout the day with another 16 oz. of water every few hours.
  • Developing reflux, or GERD is a definite possibility if you’re on tube feeding for an extended period. I’ve had issues with reflux since the late 90s (I’ve been on Prilosec for years) so this isn’t new for me, but it’s gotten worse since I’ve had the tube and it seems to be volume-related. I’m now acutely aware now of how much liquid goes in my stomach, and since it’s shrunk since I’ve been on this liquid diet, I can’t stuff myself the way I used to prior to my surgery or it will back up—which is not a pleasant sensation when you can’t swallow anything to flush it back down.

Now, about that taste thing. Theoretically you shouldn’t be able to taste anything that goes directly into your stomach via a g-tube, but I’ve found (and this has been corroborated by my nutritionist who’s heard the same from other patients) that oftentimes you do get a hint of taste from things. See: coffee (thank the gods).

I guess that’s about it for now. If I can think of anything else to pass on, I’ll add it.

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While most days I don’t miss physically eating (Progresso makes some great ready-to-eat soups that are blender-friendly), there are other days where I’m like…

 

When I was at lymphedema therapy last week, I told my therapist I was feeling pretty discouraged and quipped, “Maybe I’ll be able to eat by next Christmas!”

“Pfft,” she responded. “You’ll be eating long before then.”

I can’t say I totally believe her, but she’s been doing this work with folks in my situation far longer than I’ve been in this situation, and if nothing else, I appreciate her positivity.

On a totally different note, also last week morbid curiosity drove me to look for photos of the type of surgery I went through in September. (Google “split-lip mandibulotomy” if you like seeing raw hamburger.) Sure, I’d been shown drawings and diagrams prior to the surgery but I wasn’t prepared for the actual photos. After seeing them, I have two thoughts:

1. 1. It’s amazing they got me put back together at all, and it’s fucking incredible that four months out, I actually look as good as I do.
   2. I can’t stress how lucky I am that a numb left jaw and lower lip—and apparently transient swallowing problems are all I walked away with from this.

So for all my bitching, I am thankful that it’s gone as well as it has. Things could’ve been worse. Much worse.

As it turns out, you can purée almost anything and push it through a g-tube!

We were out shopping yesterday afternoon and as we were heading to the last destination on our itinerary, we passed one of the few remaining Long John Silver’s restaurants in Phoenix.

In short, we stopped on the way home and I picked up a two piece fish basket, thinking I’d try to eat at least a bit of it normally and throw the rest of it in the Ninja and push it through the tube.

Which is exactly what I did. I chewed and swallowed one of the two big fish pieces. And it was delicious. The other piece of fish, the fries, the hush puppies, the little deep fried batter bits, and the coleslaw went into the Ninja (although not all at once). I can’t describe how…satisfying…it was to have a full stomach after so many months of a liquid diet.

Today, after my PT session, I stopped at Lenny’s Burgers on the way home and satisfied my long-running craving for cheeseburger (never mind my 20 minute wait in the drive-thru even though I was only the second in line; slowest fucking drive-through in Phoenix), thinking I would do the same thing.

I ate half and Ninja’ed the remainder.

I don’t need to tell you how much this has improved my mood.

Baby steps, right?

Perhaps still not as satisfying as sitting down and stuffing my face with wanton abandon, but damn…this will be an acceptable alternative until I can do that again!

I know some (most?) of you are tired of hearing of my ongoing food envy/swallowing issues, but, this is my blog, and…

Anyhow, after a particularly encouraging session with my speech/swallow therapist today (and actually getting small bowl of corn chips with queso and guacamole down last night), I decided to stop by my favorite neighborhood burrito place on the way home to pick up a green chili pork burrito, with the ultimate goal of getting at least some of it down the conventional way. If not, I knew I had the purée option to fall back on.

Well folks, I got it home, cut it in half and actually ate—as in chewing and swallowing—one half of it! There were a few minor issues, and it took me so long the last bits were cold, but I did it! Have we turned a corner?

The key seems to be getting rid of the swelling in my jaw. To that end, my therapist ordered a face mask/upper body vest thing that gently messages those areas to break down the lymphedema and get those fluids moving on their way. We had a session today that visibly reduced the swelling and improved my post-session swallowing significantly. I’m also approved for dedicated PT for the same thing, which I was told in my case it’s just an hour of dedicated face and neck massage. (Can’t complain about that.)

So those cheeseburgers and crunchy tacos may be closer than I’d believed.

Goals, honey. Goals.

…of not being able to eat solid food (for however long this is going to be) is that you start seeing pictures of food everywhere. You also realize how much eating is present on television. It seems every show has at least one instance of a group of people dining together, grabbing a slice of pizza, sitting in a cafe having coffee and pastries, getting take-away Chinese… It’s just crazy.

To be honest, I’ve been cheating. Some things go down easier than others. Some things refuse to go down at all. Today has been one of those days when nothing is going down (even liquids), forcing me to rely on the fucking gastric tube (yeah, I had one of those put in pre-surgery) for everything. I’m meeting with the swallow/speech therapist next week to begin therapy. We’ll see how it goes.

So without further ado…let me frustrate myself with some mouthwatering images:

…is going to be one of the worst parts of all this. (Or at least I’m telling myself that to offset the other horrors.)

September 2nd.

That’s the tentative date of my surgery and the inflection point [I may not be using that term correctly, but you still get the idea] marking a new chapter of my life.

We’ve now met with everyone involved in my treatment and care, and I have to say I feel a hell of a lot better about what is coming. All my doctors have exuded confidence without cockiness. While this diagnosis is certainly not something I would’ve wanted if given the choice, I’m happy I have the medical team I do.

More to come…

…when my ENT described how they were going to access the tumor on the back of my tongue to remove it.

Okay, it’s not that bad. It’s only my jaw that they’ll be splitting apart and then putting back together after the tumor is removed. AS IF THAT’S ANY BETTER.

We already met with the surgeon who’s going to be taking a bit of flesh from my arm to reconstruct the part of my tongue that’s being removed. We meet with the speech/swallow therapist on Monday, the radiation oncologist on Tuesday, the plastic surgeon and the medical oncologist a week from Wednesday, and then one last visit with my ENT the following week before my surgery.

As I told Ben (and may have written here already) I’m swinging between calm acceptance and freaking the fuck out. Yeah, this ain’t my first trip to the rodeo, but I thought I was done with this crap twenty years ago. And this time getting rid of it is much more…complicated…than it was last time.

Deep breaths, Mark. Deep breaths.

I went in for my biopsy today. Good news is they didn’t have to keep me overnight because of low O2 levels like the last time. Bad news is that the spot that concerned them this time is malignant. And my first thought was literally here we go again!

Is it surprising? Yeah, somewhat. But I beat this shit in a different location twenty years ago and I’ll beat it again. Of that I have no doubt. Just not looking forward to the process, y’know? Further good news is that it was caught early, treatment options have progressed substantially over the past two decades and I have a wonderful support group that I did not have in 2003.

Next steps are CT and PET scans and we’ll go from there.

I didn’t have a blog back then so you didn’t get to read about it in real time (probably just as well, frankly), but I had been keeping a daily journal for the previous twenty years. Because I didn’t know how any of it was going to play out, I even gave up that because I didn’t want to it to turn into a morbid, morose pity party.

I kind of know what to expect this time and anything I write about it won’t fall prey to that, but I’m still not sure how much I’ll share with you guys.

If I’ve learned anything over the past years, this is just another adventure in this thing we all signed up for called, “Life.” Stay tuned.