Expecting a Miracle (I rang the bell)
Wednesday, February 15, 2023 (9 days to go)
Hello my friends,
My last blog of content was back on January 22 when I began my week-long stay at Sloan Kettering's hospital in NYC specifically for the implementation of my feeding tube. My journey since then has produced many 'firsts' that I pray will be 'lasts'. I'll do my best to describe them as kindly as I can in full knowing how ugly cancer truly is. But as I get closer to the end of my 35 days of treatments, I do now see the light at the end of the tunnel, and as you'll see, I rang a bell!
Prior to receiving my feeding tube at the hospital, I received what has been nothing short of a life-saver for me. My very own, portable suction device! Because of the incessant saliva that my body produces (as it's own defense mechanism from the radiation), I don't go more than a few minutes throughout any 24 hour day without using it. Yes. All day and all night. But as I referenced, without it, I would literally drown, so of course I am very grateful for the help that it provides.
Now, the feeding tube
You never fully grasp the idea of getting all of your food and liquids through a tube inserted into your stomach. I'm now three weeks into this, and I'm still amazed and baffled by the concept of it. But, as I still cannot swallow food or drink water like I used to, it is keeping me alive. And speaking of not eating or drinking like I used to, it is now seven full weeks since I've relished in the joy of such. You might be wondering if I feel 'hungry' at times? Well, not really. The nutrition that I get from the tube does, kind of, fill up my stomach. But your next obvious question I'm sure is, 'do I miss eating?' Do I really have to answer this? Coming from my food-loving Italian family, of course I do. And here's what amazes Andrea. I ONLY WATCH THE FOOD NETWORK! What?, yep, I'm obsessed with watching shows that celebrate preparing and eating food! And get this. My hands-down favorite is "Diners, Drive-ins, and Dives" with all their mouth watering burgers, bar pies, pasta dishes etc.! Crazy, right? But, as I'm watching it I imagine what it will feel like chewing it and tasting it, and then getting the gratification of swallowing it all down. So, for now I continue to move forward with this feeding tube until I no longer have to. I'll hold on to my fantasies of eating and drinking normally again, and I'll deal with the inevitable...
CONSTANT HEARTBURN! Which is my number 1 issue. Man, it doesn't stop. I take liquid Mylanta through the tube that kind of masks it for a brief time, but it always comes back. Some times its mild, some times it feels like my chest is going to explode! So, there's that. Another inevitable is the hacking and coughing as my body incessantly produces saliva. This constant activity goes through phases. Some times its easy and controllable, but then there's time when I can't control the coughing. These are the times that scare me. That's because as the coughing ramps up, I start convulsing. When it gets to this stage, there's the possibility that a new round of saliva was just produced. If that happens while I'm convulsing, the saliva spills over my air way, and I can't breathe. Episodes like this have only happened three times so far. The most recent was Super Bowl Sunday night when Andrea had to call 911. The prior two times the convulsing subsided after a few minutes and I was able to catch my breath. But on Sunday night I couldn't. I was terrified and thought I was dying. When the EMT's arrived, my breathing was still labored. My vitals were all OK, as they continued to monitor me. They wanted to take me to the ER, but I declined. I knew from the prior episodes that once my airway started to clear, that it would continue to do so. I was mainly concerned if I had aspirated or not. The EMT's could not hear any fluid in my lungs, so I was OK with staying home. And if you're wondering, all of this happened during halftime of the game, so I only missed Rhianna (not a fan anyway).
SLEEP? Yeah, that hasn't happened for me (and Andrea I might add) in quite a while now. Like I mentioned, the saliva doesn't stop, so either does the suction device. And as much as I praise it's value, it can wake the fucking dead! This thing is loud! Andrea propped me up with all sorts of wedge pillows to keep me upright, in the hope of suppressing the saliva to some degree. None of these efforts helped. So not only am I running on no sleep, but my dear wife who is not only my care nurse, our house maid, and still operates her own design and home staging business, is as well. It wasn't until a few days ago, when I decided to (to her chagrin of course) attempt sleeping on our recliner in the living room. I couldn't put her through any more sleepless night. So far, this has been working a little better than I expected. I guess because of a change of angle, or the scenery, who the hell knows, my times when I need the suction device have been a lot less, and I am actually getting a little shut-eye!
I RANG THE BELL!
Which all led me and Andrea to yesterday, Valentine's Day 2023. My Medical Oncologist informed us that although it was my 6th of the seven chemotherapy treatments I was scheduled for, the treatments did their job, and that this was my last treatment! As I look to hold on tightly to any and all victories on this journey, this made our day! I fared fairly well from the chemo. I didn't experience the nausea that so many patients do. I remember that I was the same back in the summer when I was taking immunotherapy. So, as Andrea and I left that specific wing of MSK for the last time, here's what happened!
Your support through this all, truly means the world to me.
In Love, Light, and Oneness
Danny