Here’s an update from my musings and activity from Dec 16 – 23 on this adventure back into PTCL-NOS.
Quotes I Kept in Mind Last Week:
“Waking up this morning, I smile.
Twenty-four brand new hours are before me.
I vow to live fully in each moment and to look at all beings with eyes of compassion.”
Thich Nhat Hanh
“Life’s what happens while you are making plans.”
Front cover of Winnipeg Free Press, sometime in 1974
To my Mom and sister Cindy (she flew in last week) for all the ways they are helping out. Day in, day out. And to the family and friends who send in notes to wish me well and mention they are praying for me.
I have completed 5 of six infusions. Still no nausea or other side effects.
I’ll admit the “Junior” tumor in my right underarm feels different. Whether that means it has grown or shifted is hard to tell. Fatigue is high, mostly due to the cancer and perhaps aggravated by the Folotyn. It’s eye opening as I think of people with my condition who then get high doses of chemo – the exhaustion can only be worse. Heart rate is up – sometimes as high as 130 bpm, from I believe normally around 67.
Last week I received a text – “You’re Emirates flight is around the corner.” Oh no, I had not cancelled the flights. I had taken care of all the trip interruption insurance documentation… but the actual trips? It was a funny feeling to go to the airline site and walk thru the needed steps.
Gosh I had so looked forward to the trip. At one point, I was certain that come hell or highwater, we were going. That’s a classic and somewhat humorous example of theory and reality. My persistent discomfort now, and even greater fatigue, would have tainted the whole trip for me. Mom would have worried every minute. The boys would have experienced one more wonky visit. I think of a grand meal served in a smelly room. Where’s the enjoyment in that? Better to find a different instance. Sigh.
Odder and odder geometry
When in the driver’s seat, I cannot easily twist my torso to get the seatbelt with my right hand. Odd. But here’s why… the fluid that collected around the left side of my tummy (front and back) has now worked its way into the tissue. The left edge has a visible overhang that is pretty firm too. Now I have a de-facto, sculpted beer gut – about 8 pounds of it. And twisting is harder, for things like seat belts. Along these lines, weight is up from around 172 to about 188. And I think my left upper arm is about to get stretch marks from the lymphedema – it is that tight on some days.
I think this new beer belly like shape on my gut is perhaps pushing on my stomach also. I have noticed I get full quicker – that sort of stuffed feeling when you eat way too much. But I have not. The oncologist prescribed a diuretic called Lasix – I will see if that helps relieve some of this.
I am a load on others
I have noticed that the persistent discomfort has made me cranky and impatient, at the expense of Mom, Cindy and the boys. Jon Kabat Zinn has a saying related to meditation, “The water boils, but not the pot.” On some instances I feel I am watching myself, the pot, get worked up and boil over.
I tell you, being the person taking care of a sick person is hard. It’s important to let them go out of the house, do “something” with other people and blow steam.
Who are your “First Peoples”?
Back on Thursday, Oct 17, as I watched a recording of Stephen Colbert, I had a funny tingle in my left underarm. Uh oh. Only one other moment was similar to this. That was from late May, 2016 when I had a scratchy tingle in my throat. Perhaps this was cancer, again? Oh man…
The next morning, in my journal, I asked myself, “Whom would you tell first?” And my answer to the following exercise was not what I expected. At the top of the list were a few close friends. Not family. Why? I knew it would take weeks to clarify the problem. I may be entirely wrong, but my hunch was friends would not plunge into worry the way a parent or sibling may. Why cause such angst for family? Since I wanted to chat with SOMEONE, start with a few friends.
Certainly, if you are married or have a significant other, the order of the list may be different. But the question remains – who would you go to first?
Tomorrow, Christmas Day, around noon, my sister Susan and her husband Chris. Then the whole family will be under one roof for a couple of days, with Dad smiling at us as he lollygags from some new endeavor he is undertaking, somewhere, in some timeframe. I cannot wait to see everyone.
I hope that this Holiday Period is smashing for you. To paraphrase a comment from my home town in So Illinois, “I hope you have 10 pounds of good loving, in a 5 pound bag.” 🙂
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