Over the past week, Daniel has continued to work hard to transition with the trach, battling mucus and coughing fits. Keep in mind, beyond the sensitivity and tenderness from the new incision site in his neck, swallowing is painful as his oesophagus wall rubs against the new pipe nearby in his windpipe. The mucus has thankfully settled down noticeably so his breathing is more relaxed for longer stretches.
The other biggest day to day challenge still is alertness. I haven’t gotten a lot of communication from him lately because he’s just not with it enough to even grab his phone, unlock it, go to the message app, and then write something coherent. You and I take all that for granted – all the time. But between the fatigue from his illness and post-surgery recovery, dopey-ness from possibly several factors, and his existing dyslexia, he’s up against a lot. Nonetheless, he fights so hard.
And so I’m fighting hard to help him solve some of that problem. I’m trying to find out what we can do to minimize the dopey-ness he’s dealing with. It could be from several things – chemo brain fog, too much pain med, and an over-medicated feeling from the primary med he’s now on. Both chemos he had are common culprits for causing serious brain fog (when you can’t focus or multi-task, you lose your train of thought, can’t think of the right word, etc.).
Basically, I found out in further research the chemo he was on (in May/June) tends to kill more brain cells than it does cancer cells. The oncologists and info sheets they give you don’t tell you that. It’s only just recently even being accepted as a side-effect, as they have always blamed other factors. Chemo can also cause nerve damage – causing “shorts” in one’s firing circuitry. These side effects can be short term or last a few years, depending on the body’s ability to repair the damage.
The good news in all of this? Daniel’s primary med can take care of that and help his body heal. It promotes the growth of new brain cells and repairs nerves by restoring the myelin sheath – the insulation on the nerve wires, if you will. It’s just another thing it does as it works with the body’s systems and not against them. We’re already seeing its God-designed restorative effects, but more on that later.
As for the other possible factors to Daniel’s dopey-ness, the Dr. and I continue to work on tapering Daniel down on the gabapentin. He’s now down to 300 mg – just a month ago he was at 2,700 mg! While gaba is an effective drug, it is dangerous and dependence-causing. You have to wean off of it very slowly to avoid powerful withdrawal. The Dr. asked yesterday about Daniel’s alertness since the previous few decreases, and we all noticed an improvement. She seemed excited that decreasing his dose seemed to be helping (when do they ever get to decrease someone’s dose?), but she also seemed to give the impression she thought it was her ideaJ. His pain is still being well-managed.
The other possible contributing factor is a feeling of being over-medicated from the primary med. I did some more research (big shock, I know), and came across a popular suggestion to take a natural supplement that boosts a compound the brain already makes. But because it’s natural, the hospital doesn’t supply it, nor had anyone heard of it. So, I had to talk with the Dr., who spoke with the pharmacist, who then spoke with me, and then she talked to the Dr. again, who gave instructions on permission to use it, and then the pharmacist had to send it down to the pharmacy for proper labelling, and then the nurse could give Daniel his first dose!
So, all of that rigmarole would likely take several days. When I brought the supplement in, the pharmacist was at the nurse’s desk, and then the Dr. “happened” to phone for her re: the supplement, and then it was sent down to pharmacy and Daniel’s nurse went herself to pick it up! Done. An answer to prayer right there.
There hasn’t been a huge immediate improvement since Daniel started the supplement, but that’s still significant. My purpose of giving him the supplement (being non-toxic), was to see if it helped, and if not then I know it’s the pharmaceutical meds he’s on (that are no longer working on pain) and/or chemo brain fog. It’s all about eliminating possibilities. Nonetheless, it’s good to take the supplement as it helps with memory too.
Just yesterday, along with improved alertness, Daniel noticed two other significant improvements. Firstly, he found he was able to rinse better than he has since around March. While he can’t pinpoint the reason why he finds it easier, it’s a very encouraging step. If you’ll remember, Daniel’s tongue is a large, swollen immovable mass in his mouth. The nerves have been covered in cancer (if not invaded by it), and his tongue extends between his jaws so he has to keep them open all of the time. That is why rinsing has been such a challenge. I’m sure you can at least try to imagine how difficult that would be. So, an improvement with even a routine thing like rinsing is very good news.
Secondly, Daniel found he was still hungry right after his lunch tube feed. That means his appetite is increasing! That is a great sign, especially considering Daniel is so very frail right now. Chemo can cause anorexia because it destroys the body’s ability to absorb food. That has been Daniel’s challenge. Not to mention the effects of the cancer itself.
So, after a few conversations with Daniel’s dietician, we all decided that adding a fifth meal to Daniel’s day is the best thing to do. The dietician wanted to just add another tetra-pak of Nestle Compleat (which the hospital is providing at my request; while it still has some corn syrup in it, it at least has real food in it too, unlike the Ensure or Boost chemical junk the hospital defaults to because it’s cheap; but I digress). I didn’t want that much Compleat added, plus I didn’t want the meal infusions taking even longer (for Foodsafe reasons because the main food I’ve bought him doesn’t have preservatives in it – on purpose). So, wow, long story but suffice it to say we settled on a good decision.
On an aside, all of these decisions, discussions, research, and general care coordination are what constitute my days now; that and taking care of two small children and a household. Maybe that gives you a better idea of what my life is like during this season. I’m so thankful God gives me the wisdom and strength I need!
So yes, we continue to see, by the grace of God, more encouraging progress. Thank you for your prayers and faithfully interceding on our behalf.
A request I have is could those of you who are local and available please remember to fill out the Google calendar I mentioned in my July 10th post? The main thing I need right now is child care while the kids are napping in the afternoon or in bed in the evenings, so I can go visit Daniel on my own. I’ve taken the kids for visits once or twice a day (it’s so great having Daniel closer), but it takes a lot of energy to manage them during the visit and I don’t get to spend more than a few moments of quality time with Daniel or stay very long. A friend has been taking the kids for an all day play date every Thursday and that has been great! So, if you’re available, please sign up. I’d just be gone while they’re sleeping – easier on them if there’s more routine.
Thank you.
And thank you to so many of you who continue to help out in so many practical ways.
We continue to trust God for the future, and pray His will would be done; that He would be glorified in and through us, and that He would be most glorified in fully healing and restoring Daniel. We trust Him for today and the future.
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