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August 3, 2021 - Finding Chemo

Today was Ed’s first chemo treatment as an infusion. I went to sit with him, but they won’t let anyone other than the patient enter because of Covid restrictions! Yes, we are back to wearing masks indoors – even if vaccinated! But, I guess I am thankful that no one other than the patient is allowed in the infusion area. I would not want Ed exposed.


Last night, he wanted to watch a comedy. We watched “Tommy Boy”. We laughed throughout, lifting our spirits and at least momentarily, putting worry to rest.


I messaged my high school girlfriends in a group text about what is going on. Each and every one of them are devout in their faith, and I am now only telling those who I know will pray specifically for him, and often. It’s so easy to just use the little praying hands emoji with abandonment on everyone’s posts. I want targeted and trusted prayer warriors. No half-hearted occasional Christians will do.


Emily suggested that we find a support group. I suppose she is needing more support than I can give right now. I am anticipating a need for support group type counseling in the days ahead, but I’m not quite ready for that yet.


Ed is handling things pretty well – at least on the surface. He laughed at the irony that when he got in the car, the radio was playing the Blood, Sweat and Tears song, "When I Die". Lyrics:

And when I die and when I'm dead, dead and gone,

there'll be one child born and a world to carry on, to carry on.

I'm not scared of dying and I don't really care.

If it's peace you find in dying, well, then let the time be near.

If it's peace you find in dying, when dying time is here,

just bundle up my coffin cause it's cold way down there,

I hear that's it's cold way down there, yeah, crazy cold way down there.

And when I die and when I'm gone,

there'll be one child born and a world to carry on, to carry on.

My troubles are many, they're as deep as a well.

I can swear there ain't no heaven but I pray there ain't no hell.

Swear there ain't no heaven and pray there ain't no hell,

but I'll never know by living, only my dying will tell,

only my dying will tell, yeah, only my dying will tell.

And when I die and when I'm gone,

there'll be one child born and a world to carry on, to carry on.

Give me my freedom for as long as I be.

All I ask of living is to have no chains on me.

All I ask of living is to have no chains on me,

and all I ask of dying is to go naturally, only want to go naturally.

Don't want to go by the devil, don't want to go by the demon,

don't want to go by Satan, don't want to die uneasy,

just let me go naturally.

And when I die and when I'm gone,

there'll be one child born, there'll be one child born.

When I die, there'll be one child born.

When I die, there'll be one child born.

When I die, there'll be one child born.

When I die, there'll be one child born.

On another instance, he heard Elvis singing about “Lord, You Gave Me a Mountain”. Combining a guilt trip with the pressure of time, he plans on telling James that he wants a grandson – and to name him Eddy! I hope he never loses his sense of humor.


Wednesday, August 04, 2021

Yesterday Ed felt the first side effect. The neuropathy the NP spoke of in the hands, mouth, feet when exposed to cold substances. Ed came home from treatment and poured himself a coke over ice, and immediately felt the tingling sensation in his throat – like it was closing up (but, it wasn’t). Rachel said that this might happen, but I think we were both thinking it would be a gradual building up of side effects – not immediate! While describing the sensation to me, he, in rare theatrical form, acted out the event, grasping his throat, shaking his head, and yelling, “Oh FUCK!” We had a good laugh. It’s like a brain freeze in your throat!


His meds arrived via a package left at the door. He opened it and removed the bottle of medicine (chemo pills) and read the label: Take 5 tablets, twice a day. WTF?! The NP told us he would be taking A PILL, not 10! I said, “Listen, Buster. You’re not taking ANY pill until you check with the doctor. What if the pharmacy got it wrong and you overdose, and every cell in your body is killed off!” Again, we laughed, but he called (at 7pm) to clarify and verify. Sure enough, the instructions were correct. The body mass, weight and height determines the dosage. He should get 2500 mg, and it is broken down into 500 mg per pill. Learning something new each day.

Nutrition is important, and with the pills, he needs to eat before taking them. So, he decides he will eat a bowl of raisin bran each morning. That’s good. Except, I asked what about the cold milk? He doesn’t want a repeat of the coke incident. Again, another small obstacle. Remedy: He will pour the milk in the bowl, then take his shower, and come back to a room-temperature bowl of cereal. But, wait. He has to pour the cereal AFTER he gets out of the shower. Otherwise, the cereal will be like mush. Moral of the story, and mantra going forward: Adapt. Acclimate. Adjust. (AAA)


Today, Ed has an appointment with Dr. Amy (the surgeon). He will likely schedule a procedure for placing a medi-port in Ed so that chemo infusions will be easier, and less irritating to the veins.


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