Simplicity and the Art of Swallowing

Posted on: Fri, 07/27/2018 - 11:31 By: akpratt
Dahlia in the sun

 Happy solstice all,

My thoughts about God's marvelous complex creation have taken me in two very different directions lately. The Psalmist David talks about the marvels of the world we live in:

 "When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
what is man that you are mindful of him,
the son of man that you care for him?
You made him a little lower than the heavenly beings
and crowned him with glory and honor." (Psalms 8:3-5)

People are an amazing creation. And He cares for us in the midst of that amazing world.

On the other hand there is an old film (1982) on my mind. "Koyaanisqatsi " is a documentary about the changes that man and technology have wrought on the earth. There is no narration - only music and images. The title is taken from a Hopi word meaning "life unbalanced." My life is unbalanced without a doubt. The chemotherapy drugs are powerful and while I haven't had another reaction, I feel the effects throughout my body. While the day to day changes due to the radiation have been subtle they are starting to build up too.

The last two weeks have been about side effects management with some new information wedged in here and there.

Whodathunk? Swallowing is an incredibly complex process. We think about it as chewing and then down the old hatch she goes. It is a bit more than that. There are actually three phases to getting food from our mouth to our stomach. The chewing grinds up the food but it also moistens it and forms it into a "bolus." The next phase begins as our tongue forms a groove and moves the food toward the pharyngeal opening. All sorts of things have to close to stop food from going down into our larynx or down the windpipe. The start of the swallow is our choice but from here on the process gets automated. The third part begins as the food bolus enters the esophagus. Peristaltic motion moves the food down to the stomach. Interested in knowing more? Here is what Wikipedia has to say.

And it is come to my attention that it can be messed with. This has been the most challenging side effect for me to manage. Difficulty swallowing started slowly enough. It is a result of the tumour being close to my esophagus and the supra-clavicular lymph nodes near my throat being treated with radiation.  So even drinking water can be a challenge. The fundamental problem is irritation so that when I swallow the bolus of food it expands my throat in ways that are painful. So I've been learning to swallow smaller bits of food. And that for a meal shoveller is a challenge.  More meals. Taking longer to eat. And when it gets really bad - popping a Tylenol to ease the irritation. And for those of you who know me - a pill popper I am not. Another interesting management tool has been a simple baking soda and salt mouth rinse. Gargling it eases some of the irritation. It also helps reduce the possibility of mouth sores.

One of the more fun challenges has been managing a medication that I'm taking to manage side effects. Dexamethasone (or Dex as I have come to know it) is a steriod used to reduce nausea and the allergic reaction to paclitaxel. I may have mentioned hiccups. When you quintuple the dosage you get jackhammer hiccups that double you over and keep you awake at night. I'm only taking it for twelve hours pre-chemo now but it is a wild ride for the next 48 hours. I have been mildly successful at managing it with another medication that reduces smooth muscle contraction. But the art of timing it has been a challenge. Dex has some other interesting side effects. Almost like a high it turns me into a real motor mouth. Dex reduces the throat irritation so Tuesday is now Shreddie day because I can swallow crunchy cereal and actually enjoy it. And increases my appetite. Of course it has some psychological effects. I blame it for the aggression that I displayed to my pharmacist when he refused to cut some of my pills in half which I then had to apologize for when I returned to pick them up.

As I come off the Dex high - known as crashing - it coincides with the chemo kicking in and weakening cells. Fatigue sets in. My platelet and red blood cell counts are down. But still no hair loss. (Sorry Ed - my brother-in-law who shaved in solidarity with me.) Three hours to mow the lawn when it usually takes me a little over an hour. And just general lethargy. And a lack of mental alertness.

At first I thought I had some sunburn on my throat. I hadn't actually realized that they were treating that high on my throat with radiation. A few other members of the team didn't either.  So after dabbing sunscreen on it to relieve the itchiness then looking in the mirror later I realized it looked like no sunburn I had had before. Kind of rashy and pimply. Hmmm I've read something about this. So I started dabbing it with Eucerin to relieve the incredible itchiness. When I mentioned it to the radiation technician, she asked "Are you using saline compresses?" And gave me the handout. Amazing. Another simple addition to the arsenal of remedies. Incredible relief. And yes I had to go out and buy another box of salt cause I normally use so little in cooking. It is back to almost indistinguishable from the normal skin surrounding it.

Immuno-suppression has been one of the hardest things for me to wrap my head around. And I'm still not sure that I'm really there. My white cell count is way down. While I have always been a hand washer probably the bigger challenge is recognizing environments where I'm exposed to germs. The guy sitting next to me piling up kleenex with his snuffly nose; a little cut from a bramble when I was mowing the lawn; scooping up spilled hot fudge sundae in the Dairy Queen. The list goes on. 

But it isn't all gloom and doom. In meeting with Dr. Johal last week he mentioned that he is thinking I'll be ready for my mastectomies at the end of July. Great 60th birthday present - good bye boobies. I wasn't expecting it that early. Previously it had been early September. In addition the breast tumours have shrunk. In fact to the point where he couldn't palpate the right breast mass. Mind you I have never been able to find that one either. While this was expected as a result of the chemotherapy it was nice to see. It makes me realize that it is also happening to the mass in my chest.  And he is seeing me as a good candidate for immunotherapy. So we have some balls in the air. And in the long term I am also a good candidate for a palliative therapy known as targeted therapy. I  have an EGFR positive mutation which means that there are hormone treatments that can be used to keep the cancer at bay for awhile. The cancer does eventually mutate and it loses its effectiveness. Then there are other targets that can be used.

As result of the swallowing difficulty I was referred to a dietitian. She is wonderful. I have lost 40 pounds over the last 6 years and so have been paying a lot attention to what I eat. My calorie count was 1700 for that period. I had given myself permission to sneak up to 2000 to maintain my weight through this. Imagine my surprise when she pointed out that I needed at least 2400! Little wonder I've been losing weight. So for the last two days I've been trying to hit it. And it is hard. Habits are harder to break than I thought. But she had lots of great suggestions. Part of the challenge is to keep it all soft so that I can actually swallow it. Everything from chia seeds to sauces and gravies. And even tofu. I have targets for protein (to replace all the stuff that is dying) and fiber (cause constipation is an issue.)

To sum up. Life is challenging but interesting. I find myself noticing the little things. The red throated flicker as I started my walk yesterday - an unusual bird to see in an urban environment. The crazy nuthatch family on our suet block. The American goldfinch flitting through our cedar tree. And I realize that truly we live in a complex world - a world that our God created. And in the midst of it He cares for me. Life might seem unbalanced but as we work with Him in that it will come back into balance.

Pray for evenhandedness for me as I deal with all these side effects. I'm still gathering comments on how positive I am about this whole thing and I think that is a direct result of prayer and faith in God. Thank you for all your notes and all your prayers.