A year of living.

A place to relate, share, care for, and support one another. A place to share about our daily activities and events around the home.
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Wayne in Maine
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Re: Nurses as far as the eye can see.

Post by Wayne in Maine »

steve-in-kville wrote: Thu Sep 02, 2021 6:41 am
Wayne in Maine wrote: Wed Sep 01, 2021 9:04 pm

I'm getting a new room mate as I'm writing this.
Hopefully this one lets the nurses alone 8-)
I have not met him but By Golly he has the thickest Maine accent I've ever heard!
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Wayne in Maine
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Pretty in Pink

Post by Wayne in Maine »

The day was going to be busy but I was prepared for it. I knew I would be doped up from the TEE (Transesophageal echocardiography) later in the day so I took my training walk early. I paced the entire rectangle of corridor counting my steps (I have a steady measured 1-1/4 foot pace) and determined it was 180 feet. So I walked at my breathe easy pace around this block 7 times: ¼ mile! Wow that felt good! I did it entirely with my cane alone, not for support but safety. I’m definitely getting stronger and will certainly not need a transport chair when I get home.

No breakfast of course, NPO (nothing by mouth) after midnight until after the TEE. The surgeon who was going to take my port out popped in when I was about to make some phone calls. “Are you brave? Do you want to do it now?”, “I want to get a few things done, lets stick to the noon appointment.” He was fine with that. Truly I love the respect folks have here for their patients and their time. The surgeons and doctors are not demi-gods lording their patients. They are guys and gals who listen and accommodate our needs and wishes, not merely theirs.

When noon came around he met me in the corridor where I was taking a short but fast paced training walk. He said he would go ahead and prep my room. He cleared my bedside table for his instruments as I laid down and told me what he was going to do.

After prepping my skin with an iodine wash he covered me with a sterile surgical towel. He warned me that the local anesthetic would sting as he injected it. “That’s okay, I’m quite used to being poked now.” The first poke did sting, but as he injected more the site numbed up. We chatted and joked around as he started to delicately cut. I told him to not make me laugh of I might make him slip! He himself commented on the weird sound of the scalpel against the port, I noticed that too. When he had made just enough of a cut he delicately removed the main body of the port and disconnected the tube that goes over my collar bone, into my jugular vein, and down into a vein junction by my heart.

A laid there waiting for a weird sensation from his pulling that tubing when he announce that he had packed it all up. “You pulled the tubing? I didn’t feel a thing!”
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I assume he sutured the site, I wasn't paying attention. Maybe not as he’s going to place “Matilda” (my new port) on Tuesday. He bandaged me up, warned me it would be sore and I told him I was going to take a little nap to let things settle and avoid starting any bleeding. “Great!” he said, "that’s what I would have advised you." I have this stuff figured out now.

We chatted a bit more. He wanted to know where he could find an article on Gelassenhiet, as I had mentioned the term in relationship to my “chill” attitude ( what a great term to add to the 17 English words we need to define Gelassenheit!). I referred him to the excellent article in the on-line Mennonite encyclopedia written by Robert Friedmann. I told him about Friedman’s conversion to Christianity after he had been assigned the translation of some old Hutterite treatises as part of Robert’s Doctoral Thesis. Dr. Bird was quite intrigued.

My oncology nurse called, as I converted my scheduled visit to a phone conference. We went over in detail everything that had gone on over the past few weeks. She wants Betty and me to thoroughly document our experiences at Central Main Medical Center, so that the team at the cancer center could make better decisions about what facilities they send their patients to. Once again, it’s great to work with professionals who respect your judgement and who see you as a participant in your health care, not merely a subject.

My TEE had been rescheduled to 1:45, so I napped and relaxed. I then got up, washed up and put on my surgical Jonnie. The nurse had dropped it off this morning. She was apologetic. They were out of them on my unit had to borrow one: a pink one. Well, yes, they borrowed it from the maternity ward and it even had the slits for nursing! I suspect the wise guy nurse I pulled the maple syrup / bile drinking stunt on was behind this as her revenge!

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When the time came the nurse and CNA helped clear my bed and wheeled me down to the surgical suite. A cheery crew met me there and introductions were made all around. They roared with laughter when I showed them the nursing slits in my pink gown! While waiting for the surgeon I learned that my nurse had worked with the Gastroenterologists and Maine Medical Center in Portland. I asked her who the best in the group was and she wrote a list on a slip of paper for me. I want my bile duct stent done by the best around, I’m not returning to the hospital where they tried and failed before. Not because of their failures, but because their shoddiness put me in the state where I had to spend more than a week here getting treatment for a life-threatening infections and poor patient teaching on my discharge. Betty and I lost many precious days of our brief retirement that we will never be able to gain back.

I pretty much knew the procedure I would go through, it was just another endoscopic procedure (my fourth since March). I sucked on the cherry flavored throat anesthetic until it had washed down and numbed the back of my throat. The anesthesiologist was impressed that the Q-tips were sucked dry of the stuff “Been there-done-that” I said.

I rolled into position for the surgeon giving him an optimal (if slightly uncomfortable for me – but I would be asleep soon) position. The anesthesiologist started the knock out juice and I woke up in motion back to my room, dazed and confused. That’s how these procedures go as a patient. You go to sleep and wake up later in the twilight zone. The surgeon dropped by later with the good news that my heart was fine, no valve damage from the infection. He also told me that as they anesthetized me I started to sing!

By the time I got back to my unit I was revived. As we passed the nurses station I announced “It’s a boy!”.

I rested comfortably with the spinning in my head slowly subsiding. I listened to some music then made a video call to my daughter Franzi, she roared when I showed her my gown! I then dozed until Betty came in. She had brought me a Dunkin Donuts coffee and some “Wilber Buds” chocolate chip cookies. Ahhhhh. This is the life!

God is good, He gives us life and good things. He gave me a precious loving wife and I was glad in that moment to see her lovely face again smiling at me, God’s most precious gift to me.
4 x
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Wayne in Maine
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"Long ago I used to be a young man, and dear Margaret remembers that for me."

Post by Wayne in Maine »

I’m home sitting at my desk with a big mug of coffee early in the morning as is my routine. I read the news, check Facebook, do a little on-line research and sleuthing, and catch up on Mennonet's latest kerfuffles.

I unlocked my computer and found where I let off last Wednesday when I had my ambulance ride. I had left off reading about the pain scale! Well I wanted to be precise and accurate in using this smiley face 1-10 scale – I am, after all, an engineer!

I hope my last post was not too much for people with its medical details. I just wanted folks to know that with the right attitude you can get through these scary procedures and surgeries. You have to go through it anyway, keeping a good attitude about these pinches and pokes can make it easier for you and for the men and woman who want to heal you and who do not want you to suffer at their hands. Always thank them even if it hurts or is uncomfortable, they are doing their best.

I was discharged from the hospital yesterday. A nice male nurse who is training for more specialty work installed a mid-line IV in my arm as a temporary for my daily antibiotic infusion until I can get a new port (Matilda) installed on Tuesday. We made the process comfortable and easy for both of us. It was another fascinating process to see how he used ultrasound to actually inspect the inside of the vein deep inside my arm that he was targeting. The hospital physician had ordered a CAT scan of my chest and I had had to cancel a CAT scan my oncologist ordered at a different provider – so my hospital physician at my request arranged to do a full pelvis to chest scan with contrast at the hospital before I left, killing two birds with one stone.

My nurse came by, after that. I had dressed in my normal street clothes and put on my jaunty hat ready to go. We got excellent discharge instructions and all the supplied we needed to change my dressings at home and do the flushed to my bile drain. I delivered a huge box of hand selected chocolate treats to the nurses station – Betty know what nurses like! I said my goodbyes and thank you’s. I am going to dearly miss these caring healers and I hope God touched their lives in a wonderful way through this cheerful, uncomplaining fascinating old man in room 216 (or so I hear he has that reputation).

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After “Hot Rod Cassidy”, my CNA, delivered me to the car Betty drove me the long way home, on the road that follows the New Meadows River, stopping at the gate at Thomas Point Beach where I got my VIP bracelet for the Bluegrass festival. We plan to go down this weekend to enjoy some of our favorite acts – especially Becky Boller and Leroy Troy and his Tennessee Mafia Jug Band. I’ll attire myself in my old Amish straw hat I used to wear when we had our peddlers wagon down at the festival, so old friend can find me. I’m looking forward to the day there.

Betty had re-arranged the living room furniture from Real Estate showing mode to Home mode. It’s nice to have this house converted back to our home for the next few weeks. I could hardly stay awake in my recliner when I got home and slept off and on while Betty watched one of our favorite old movies “Brother Sun, Sister Moon”.

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Betty helped me up the stairs to bed. She laid out the pills I might need for the night and set up my CPAP. Everything I might need in the night was within reah, including her hand. We prayed prayers of thanksgiving and for continued healing - and for a little break from this dram so that we could enjoy some fun together still before we move. Betty's loving care for me brings to mind the song “The Dutchman” about an old man (suffering from dementia it seems) and his wife:
"She makes the bed up humming some old love song
She learned it when the tune was very new
He hums a line or two
They hum together in the night
The Dutchman falls asleep and Margaret blows the candle out…"
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danfreed
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Re: A year of living.

Post by danfreed »

Hi Wayne and Betty,

You two are so inspirational!
Keep writing as you can.

And "May the God of hope fill you with all joy and peace as you trust in him, so that you may [continue to] overflow with hope by the power of the Holy Spirit." Romans 15:13

Such love, joy, peace and hope flow from your lives...

Dan
3 x
My spiritual perspectives are Jesus-centered, evangelical anabaptist, New Testament Bible based...
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Yesterday was a rather uneventful day. I moved from bed to desk to living room recliner and back. Napping was my priority. I’m surprised this morning to find how strong I feel for having skipped any exercise and simply rested yesterday.

I’ve been writing, formulating lots of things like the relationship between discipleship and Gelassenheit, “conversion and spiritual birth”, how does on come to a point of deciding to follow after Jesus? I put on my old curmudgeon hat for a little while and waded in to some controversial topics on Mennonet. I would like to see it less of a forum for hostile debates and more one or discovering the depths of discipleship and following after Jesus. A place of encouragement and a place where we can stretch our minds and hearts.

I chatted with Brother Josh on the phone. This time I did not fall asleep while we were talking, as I did the morning before when even the roar of the Blue Angels demo team could not keep me awake (there’s an air show this weekend, they practice in our neighborhood).

I’m recovering from illness right now and expect to return to feeling normal at least for a season. God alone knows how many days I am given, I intend to give testimony to the joy of those days for as many as I have. Someday there will be no recovery from this cancer, no keeping it at bay, and this is how my last days will likely be spent- resting, reading, praying, writing, listening to good soothing music. We hope as well to fill the house with visitors and conversation to enjoy fellowship of the home as well as fellowship of the phone.
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MaxPC
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Re: A year of living.

Post by MaxPC »

Wayne in Maine wrote: Sun Sep 05, 2021 7:38 am
I’ve been writing, formulating lots of things like the relationship between discipleship and Gelassenheit, “conversion and spiritual birth”, how does on come to a point of deciding to follow after Jesus? I put on my old curmudgeon hat for a little while and waded in to some controversial topics on Mennonet. I would like to see it less of a forum for hostile debates and more one or discovering the depths of discipleship and following after Jesus. A place of encouragement and a place where we can stretch our minds and hearts.
You are not alone, Wayne. A number of us would like to delve deeper into the depths and breadths of discipleship. It is a worthy effort to be sure.
0 x
Max (Plain Catholic)
Mt 24:35
Proverbs 18:2 A fool does not delight in understanding but only in revealing his own mind.
1 Corinthians 3:19 For the wisdom of this world is folly with God
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Today was a slow sleepy day. I had hoped to write about my day Yesterday at the Thomas Point Beach Bluegrass festival, but I will have to save that.

I had a terrible night trying to breathe. I woke often gasping for breath tying to force precious oxygen into my lungs over the swelling pressing against my diaphragm. We expect this swelling to be completely resolved after on or two Chemotherapy sessions. I praise God I will resume those on Wednesday after a 5 week break allowed the cancer free run for the duration. My liver and other bodily functions are in good enough shape to resume treatment.

A nurse came by today - we have been given visiting nurse services several times a week. It's good to have a third pair of eyes on my health and procedures. Betty is a professional and we are managing even complex dressing changes quite well but again, it's good to have another professional involved.

Betty and I are getting very good at administering the IV meds I receive at home, maintaining my bile port and inspecting and changing the various dressing I have. We're a great team, and these are special times for us in our own way.

I'm excited about getting my new port installed tomorrow and bringing two articles about Gelassenhiet to my interested surgeon. In the afternoon I expect to delve into the business of finalizing the sale of our Maine house.
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MaxPC
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Re: A year of living.

Post by MaxPC »

Wayne in Maine wrote: Mon Sep 06, 2021 7:08 pm Today was a slow sleepy day. I had hoped to write about my day Yesterday at the Thomas Point Beach Bluegrass festival, but I will have to save that.

I had a terrible night trying to breathe. I woke often gasping for breath tying to force precious oxygen into my lungs over the swelling pressing against my diaphragm. We expect this swelling to be completely resolved after on or two Chemotherapy sessions. I praise God I will resume those on Wednesday after a 5 week break allowed the cancer free run for the duration. My liver and other bodily functions are in good enough shape to resume treatment.

A nurse came by today - we have been given visiting nurse services several times a week. It's good to have a third pair of eyes on my health and procedures. Betty is a professional and we are managing even complex dressing changes quite well but again, it's good to have another professional involved.

Betty and I are getting very good at administering the IV meds I receive at home, maintaining my bile port and inspecting and changing the various dressing I have. We're a great team, and these are special times for us in our own way.

I'm excited about getting my new port installed tomorrow and bringing two articles about Gelassenhiet to my interested surgeon. In the afternoon I expect to delve into the business of finalizing the sale of our Maine house.
Prayers for your port procedure. :pray
0 x
Max (Plain Catholic)
Mt 24:35
Proverbs 18:2 A fool does not delight in understanding but only in revealing his own mind.
1 Corinthians 3:19 For the wisdom of this world is folly with God
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Wayne in Maine
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Location: Slightly above sea level, in the dear old State of Maine
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Re: A year of living.

Post by Wayne in Maine »

I was released from the hospital last Saturday in pretty good shape. The plan then was to get to the Thomas Point Bluegrass Music festival. I’ll defer that story for now. There’s a lot to write about my family’s activities and relationship to that event.
The Outpatient procedure to install my new port went quite well. Painless. The last one was done under with local anesthesia, this was done with a quick general. Now Matilda rests close to my heart!

I want home with an oxygen concentrator. Breathing was still bad. Breathing became my next crisis.
I have only been able to take short shallow breaths, likely due to the Pleural Effusion around my lungs and other fluid build up from the cancer. By Monday morning I was suffocating. Another ambulance ride brought me to the ER where the ER physician conversed with my Oncologist. This sort of thing can spell the end to my cancer (and me).
It was decided to have a pulmonolgist drain the lung cavity….
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GaryK
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Re: A year of living.

Post by GaryK »

Wayne in Maine wrote: Thu Sep 09, 2021 7:09 am I was released from the hospital last Saturday in pretty good shape. The plan then was to get to the Thomas Point Bluegrass Music festival. I’ll defer that story for now. There’s a lot to write about my family’s activities and relationship to that event.
The Outpatient procedure to install my new port went quite well. Painless. The last one was done under with local anesthesia, this was done with a quick general. Now Matilda rests close to my heart!

I want home with an oxygen concentrator. Breathing was still bad. Breathing became my next crisis.
I have only been able to take short shallow breaths, likely due to the Pleural Effusion around my lungs and other fluid build up from the cancer. By Monday morning I was suffocating. Another ambulance ride brought me to the ER where the ER physician conversed with my Oncologist. This sort of thing can spell the end to my cancer (and me).
It was decided to have a pulmonolgist drain the lung cavity….
Continuing to pray for you, brother!
1 x
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