Storyline: Thinking in Autumn Colours
I hope this is the last post from the health compartment for a long time. We wrote about almost everything that happened the second half of 2021 with Alex’s health. I just watched the video he made 3 weeks after the hospital discharge. At the end of October, it was our proof of concept for future travelling with Doranya, our campervan, aimed at the coming spring and summer. We then expected that he will still be with the feeding tube. He was taken a good care of at NYGH (North York General Hospital) for exactly a month. With the collective effort of many specialists, he was eventually given the most rare and unexpected reason for his vocal cord paralysis. One day his hematologist called with the unsettling news – his leukemia cells had jumped the blood-brain barrier into his cerebrospinal fluid. As a result, the membranes that protect the brain and spinal cord, had become inflamed and had caused interruption of signals to his left vocal cord and epiglottis. There was a roadmap to recovery he had said. But by the time of Alex’s discharge and thereafter, no one would commit to a timeline (very upsetting to me, a retired project manager). All we knew was that it will take a very long time. It might even be permanent. From what we understood it was extremely rare for the CLL to jump into the CSF and cause neurological damage, but perhaps a paralysed vocal cord was not even among such known damages. And so, we set our expectation of living with this for months and perhaps years to come.
My first hope actually was given by the assigned homecare Speech Language Pathologist (SLP) during her first visit on Oct. 16, just 10 days after Alex was discharged from the hospital. At the time he was able to swallow only small sips of water and clear chicken broth. Even sweet apple juice was not going in. She prescribed some neck exercises with a squeeze ball that I ran and bought from Dollarama, despite Alex being very skeptical of all this. You see, two days earlier I had e-mailed his hospital dietician (who was so kind to give me her business card) with tons of questions triggered by lack of help, let alone sympathy by the home care coordinator. In passing I mentioned Alex being able to swallow 15 to 20 tea spoons of chicken broth. Sonya called almost immediately to answer my questions, but also to tell us not to try anything by mouth because he could aspirate. Ignoring ours and everyone else’s concerns of aspiration, the SLP allowed back the only thing that Alex could enjoy at the time – the clear chicken soup. She stressed on focused swallowing. It seemed to me that at the time, she was the only person believing that Alex’s condition was fixable sooner than later. During her first visit, merely a week after Alex’s discharge, we were told by the home care dietician to buy our own enteral feeding pump because they had lent us one for only a month. Despite the fact that I wanted about two months to evaluate Alex’s progress. We were told by the home care coordinator to buy our own syringes and other supplies after a month of him being home. All of them sounded as though we would be in the situation for a very long time and perhaps permanently.
Except our SLP! By her second visit Alex had already tried potatoes and even filo pastries. Ignoring all aspiration concerns again, she pushed through with “Start eating!” and a recommendation for pasta with lots of tomato sauce for her December appointment. She also said back then (November 24) that in 3 months Alex would be without a feeding tube.
From there on everything is history. We added Alex’s favourite digestive cookies dipped in a cup of tea, a second dream of his, after having a few tea spoons of chicken soup. I continued adding to his food. Starches were going well, but not proteins. So, I’d purée chicken thighs with vegetables and potatoes. Once purees were going down, even with the help of lots of water, we began replacing the feeding tube meals with real one, taken orally. Initially I’d count calories. One box of enteral food was 375 cal and he needed 6 boxes or 2250 calories a day, just to maintain his weight of around 79 kg (175lb), which was 40lb less than his pre-hospital weight. So, if he had around 375 calories, I’d discard one of his cans… this continued until all of his canned food calories were replaced by real food.
I added pierogies to the menu, although we never had any before. They were stuffed with meat or vegetables or potatoes and were going down really well. Filo pastries with meat or spinach and feta were regular. Pasta, potatoes and more recently all kind of cooked vegetables and lentils, chicken, fish, well-stewed pork. Until he got to one of his favourites – grilled cheese and bacon sandwiches.
For those of my readers who are on a perpetual diet of one sort or another I’d say: unless this is what you enjoy doing on a daily basis, or have a health-related reason for it, stop it and enjoy the life that surrounds you! If you are not binging, if you are not overeating, if the food on your table is healthy, if you are healthy, but you still don’t look like a movie star just accept your nature-given appearance and focus away from it and from comparing yourself to someone you are not. Enjoy your hobbies, your loved ones, your garden, your flowers, reading a book, writing a book, watching a movie, writing a script for a movie, chatting with your friends or neighbours, exercising in your basement (yeah, we are still in Covid times), the birds outside your window and yes making and enjoying a good gourmet meal! Because you have no idea how lucky you are that you can eat (and you have food to eat). Have a glass of wine or lemonade if you want.
You have no idea what it is like not being able to eat or drink. And you have no idea what it is like to watch your loved one not being able to swallow even a sip of water. I cried a lot trying to hide and stuff something into my own mouth while Alex wasn’t watching me. Cooking a good meal was something from the past. Cooking any meal was something from the past! I just couldn’t face it. I am thankful to all of you who brought me a cooked meal at that period of our lives.
The biggest fear, perhaps somewhat phycological, for both of us during this process was his many medications, especially the chemotherapy capsules. Because they are targeted therapy, they had to end intact into his stomach. So, the possibility of being stuck to his throat or worse, going down the wrong way, was scary. The smaller pills were going down no problem already, but how would we know if he could swallow the chemo-capsules? I looked through our medicine cabinet and to my delight I found a few cranberry supplement capsules, bigger than his chemo caps. He swallowed one of the cranberry capsules with no problem. It was December 17Th! Just 3 weeks after our SLP predicted that the tube will be gone in 3 months! Three weeks, not three months! Alex beat all the expectations! Even his own! We reported this to his hematologist’s assistant. And although Alex has not spoken to the hematologist since his last spinal tap in November, the message apparently got through to the doctor and a referral for the G-tube removal came in last week. Despite Covid-overwhelmed hospitals, Alex’s G-tube was removed on Friday, Jan 14th. This is about three and a half months since the G- tube went in. But his first attempt of eating solid food (two slices of fried potatoes) was on Nov. 14th, two months before he lost the tube for good or just over a month from his hospital discharge. I bet he beat everybody’s expectations!
Alex: I almost wished for a few minutes that I didn’t have the tube removed. It was without a doubt the most painful experience during this whole odyssey. There is no finesse to the process…the doctor just takes a firm hold on the tube and pulls it out, revealing a mushroom-head bulb at the end and that had to deform enough to get through a hole in my stomach and chest that was about ¼ the width of the mushroom head. At least the doctor warned me beforehand, asking me if I liked to swear a lot. I’d told him that after I had my gall bladder removed earlier in 2021 I’d had a JP drain from my abdomen, so I had an idea of what was coming. To which he replied, “Oh this will be much more painful to remove than that”. I can now attest to the veracity of that statement. I did, however resort to just one expletive which I have no idea how or why I chose: JEEEEZUUUS!!!
There are many people from all walks of life to be thankful to and I am sure we’ll write a separate post on this. However here I’d like to say a big thank you to Pallavi, our SLP, who gave me the initial hope and encouraged (with my insisting to try it) for Alex to start eating! The results are amazing! He has now put a couple of kilos back on and no longer looks like a desiccated prune.
Join the conversation around our e-Table