Torturing Myself
Just Like Old Times
This was needed today.
Torturing Myself
Begging Off Another Family Function
Today was the local “memorial service” for Ben’s uncle from Albuquerque who unexpectedly passed a few months ago. Held at the family homestead in Scottsdale, it was to be an informal affair (no priest, and no formal eulogies unlike when his grandfather passed last year). Ben left early today to pick up food and set up things, and I was going to join him later this morning.
I headed out with every intention of attending. I stopped at Window Coffee to pick up my morning beverage (something that surprisingly I can swallow successfully in small sips) to nurse while I was at the gathering. As I was leaving I got a text from Ben asking me to bring the salad he’d forgotten that was in the refrigerator. I texted back and said I was already on my way but I’d be happy to go back and get it—since I’d also gone off without my watch and felt naked without it.
As I was heading home, he called and told me not to bother. “There’s more food here than we’ll ever eat.” I still needed to get my watch, so I continued home.
Once there, I was [figuratively] attacked by our increasingly-codependent doggos and kept thinking about the “more food here than we’ll ever eat” comment and I grew increasingly despondent. I mean, there was going to be no memorial service and by all accounts it was another family gathering where eating and drinking was front and center where people break off into their little groups and I find myself sitting alone in a corner. After I brought in the mail and grabbed my watch before leaving again, I was confronted with two pairs of big brown eyes all but begging me to stay home, I called Ben. I knew he would be disappointed, but I told him I wasn’t coming—for those exact reasons. Since Christmas Eve dinner had been such a disaster for me, he said he understood completely and didn’t want me feeling uncomfortable in that situation.
[It’s not like I haven’t tried eating; yesterday at lunch I forced a bit of pork burrito down before pureeing the remainder, but I was still regurgitating bits of pork this morning so it obviously didn’t go anywhere. Where it had been hiding out for the last eighteen hours is anyone’s guess. I suggested another swallow study to my therapist last week so we can actually see where this shit is getting stuck and that might facilitate a different approach to the therapy.]
Now you’ll excuse me while I take the contents of my lunchtime mini charcuterie board and throw it in the blender….
Torturing Myself
Despite weeks of therapy, getting solid food down the normal route remains…elusive. I can sip my morning iced caffeinated beverage, but it takes me all day to make it through a 16 ounce cup. But don’t worry…it’s not like I’m not getting any regular food; it’s just getting pureed to within an inch of its life and going in the g-tube. My therapists remain hopeful, however, and won’t let me sink too low into depression, so there’s that.
(And TBH, since I’ve added real food back to my diet the cravings have subsided substantially and I’ve stopped losing weight. The worst part now is the expected attendance at social events where eating is the primary reason for gathering. Lately however, I’ve been avoiding them altogether because—my personal hunger aside [I order everthing to go]—it’s just too difficult to sit there and watch people eat.)
Torturing Myself, Holiday Style
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:
-
- 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.
- 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.
Another Cause For Celebration
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 Was Wondering When This Was Going To Show Up…
A Small Breakthrough
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.
A Brief Health Update
How do people without insurance do it?
Short answer, they don’t.
Healthcare in this country sucks.
I went in for my second once-every-three-week Keytruda infusion today. I was handed this “informational sheet” at check-in. I mean, I knew this shit was expensive, but that $30K figure isn’t for the full course of treatment; it’s per infusion. A year’s worth of treatments rounds to more than half a million dollars.
As I was getting unhooked from the IV, the nurse and I had a long conversation about the state of healthcare in these United States and agreed that we needed Medicare for all, no questions asked. We’re the only “first world” country without universal healthcare and frankly, it’s a fucking embarrassment.
Torturing Myself
…while I sit here sucking on ice chips.
Still, things could be worse. Much worse.
One Of The Worst Parts….
…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:
No Coffee For However Long It Takes For Me To Heal…
…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.)
For Any Of You Following Along…
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…
This Image Flashed In My Head…
…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.
Sigh. The Results Are In.
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.