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.
MaxPC
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Re: A year of living.

Post by MaxPC »

Wayne in Maine wrote: Fri Apr 09, 2021 7:38 am I'm still alive! I'm not quite ready to start a countdown clock.

We had talked about what we would do if we had just a year to live. I never contemplated what life might be like living with a disease that is slowly killing me, and, quite frankly, what changes might happen around me.

As an update. My first chemotherapy went pretty well, the side effects were minimal and the treatment was surprisingly effective in relieving the discomfort I had experienced. My appetite is returning, but I am still watching my eating as I know I will feel a whole lot better hauling 30 pounds less around - so my weight loss is good and under control. My primary care physician has really stepped up to the plate and other medical issues that have been plaguing me are well under control. I got a cortisone shot in my arthritic knee (he had been giving me exercise) which really helped. Cancer notwithstanding I feel better than I have in over a year. We are well along in the plans and process of purchasing the house next to my daughter (and grandchildren!) in Pennsylvania and selling our Maine home. Yesterday we quite spontaneously decided to take the entire family on "road trip" to Iceland in September!

The news was bad when my physician first detected an irregularity in my esophagus; almost every day for the next two weeks the news got worse and worse until the afternoon when my Oncologist gave me the good news that I had a year or so to live - we were expecting worse. Since then things have been turning around and every day has been bringing good news. It's almost too much for me at times to deal with the way God is blessing me and my family. I'm quite happy, not distressed about the future, grateful for every new gift from God and all I am experiencing. I'm enjoying life and have nothing to complain about. I am so cheery that I have to assure people that I am not on mood altering drugs, that this is real, and I attribute it all to God. In my relationship with God I am living a submitted and contented life.
:hug: Praises be to God. :pray
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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 »

I'm posting this here for those who do not have Facebook (I don't blame you!).
I have had friends and acquaintances in the past who were diagnosed with a terminal disease. I found it very awkward to even write to them, let alone get on the telephone and talk to them, and so I avoided them. I did not do this out of any malicious intent. I just didn’t want to ”say the wrong thing”, so I said nothing. I did not want to intrude, so I left them alone. I did not know what to say, so I said nothing. I realize, now that I am one of "them”, how wrong I was about all of that, and I feel sorry for the missed opportunities to lift someone’s spirits (and to let them lift mine) and to simply have a chat with a friend that I may never again see in the flesh.

So what do you say to someone whose doctor has told them that their days are numbered?

“Hi Wayne, how are you doing? I heard about your illness, [inject anything you want here, you cannot cause offense by saying “that’s too bad” or “God knows” or “gee that’s awful” or “cancer sucks!” or “I know someone who had…”].

“How’s Betty doing?” [give her a call too, she has a different life struggle than I do and feels even lonelier than me]. “Is there anything I can do?” [I have a list if you really mean it! 😉 ].

Once we are over that hump, breaking the silence, let’s just chat. I’ll tell you how God has been so good to me. I’ll tell you how chemotherapy has not been as bad as I expected. I’ll tell you about the wonderful plans we have to move next door to my daughter and grandchildren and to enjoy a few months as retirees here in “Vacationland” before we move. I’ll want to hear how you and yours are doing too! You will marvel, quite frankly, at the ups-and-downs we’ve been going through and you’ll laugh at some of the silliness in our lives. You’ll get a smile to hear about the good times we are having with our family and friends during this “year of living”. Maybe we’ll talk about old times and say to each other that we should have stayed in touch more. You might even get an invitation to “Want-Not Farm” for a Lobster Dinner!

Not everyone who is living with a terminal disease has been blessed as I have with the grace to live contentedly, fully yielded to God in what is happening in my life, with a heart full of gladness (I might be experiencing what in the Anabaptists tradition is called “Gelassenheit”). I think I can say though that everyone who has heard the terrible news “you have a year to live” gets lonely and longs
not just for consoling words, but for friendship and fellowship and a note or a voice at the end of the phone line. You can’t catch cancer over the phone. It will not jump through the phone line and into your ear!

And remember too that while I am the one who is living with a disease that is going to shorten my days, my wife and children are facing their own and very different experience and loneliness. They need friends to write or to call them up too and say “Hi, how are you? I heard about your [husband’s, father’s] illness… what’s this about a Lobster Dinner?”
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QuietlyListening
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Re: A year of living.

Post by QuietlyListening »

:up: :up:
Thank you Wayne- really appreciate this- will help me if this happens to those close to me or of my acquaintance. Thank you.
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Today I was juggling 7 phone calls to:
Arrange a realtor for my house in Maine
Schedule an appraiser for the house in PA
Schedule a building inspector for the house in PA
Light a fire under my banker to get the appraisal done for the Maine house
Chat with my daughter Franzi
Call my wife to let her know what’s up
Schedule a meeting with an attorney in Pa for a title search
That on top of an hour at the office, blood test, shopping at 4 different locations from Brunswick to Boothbay.

Well some days that’s what you do when your “freshness date” is expiring!

I’m taking a nap - chemo tomorrow.
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

I had my second Chemotherapy treatment yesterday. The Cancer center I work with is is really quite good. They are affiliated with Dana Farber and Boston's Brigham and Woman's hospital. Brigham and woman's has a clinic and team specifically dedicated to esophageal cancer. My Oncologist and his Nurse practitioner are very involved in researching the latest treatments and therapies, even experimental ones. I receive blood tests the before each treatment then meet with the MD or NP to discuss my status and "what's new".

The center does all the chemotherapy in-house. There are two open rows of cubicles with recliner chairs and the medical equipment to give the treatments. about 24 patients could be treated at once, the most I've seen there was 8. Some of us have ports (an implant under the skin in our chest with a tub passing through our jugular vein and down near our heart). That way they don't have to start an IV in the arm every time and it's very easy to hook up a secure hook shaped needle through the port so that I can use a portable pump. That hook-shaped needle looks scary as heck and it's very uncomfortable when it's put in place, but after a little while I hardly notice it - even with my portable pump. My wife was taught how to remove it when my 46 hour infusion with the portable pump is done.

I'm one of the new people there, other folks getting their treatment are old hands. They have personal relationships with the nurses at this point, which is really sweet, including the 105 year old World War 2 bomber pilot who was there - he flew 59 missions as co-pilot and then pilot which is an astounding record. I honestly wanted to salute such a courageous man (whose chances of survival after just 12 missions was just 25%) in spite of my misgivings about war - I pray that our non-resistant young men would be so courageous in spreading the Good News of the Kingdom.

Once I'm hooked up the the center's pump I just relax and read, nap, text, pray, etc. I even had my daily chat with Franzi right from my cozy recliner using my cell phone. They have internet so I brought my laptop. They infuse about 4 different medicines into me. The first two are to prevent nausea, including a steroid which -um... gets me a little zinged up (a lot zinged up the next day - today!). The next is one that will enhance the effect of the forth - 5FU: the cancer killer. Cancer cells grow very fast, typically faster than any other cells in your body. 5FU is a poison that kills fast growing cells. Of course skin and hair cells also grow fast so it's tough on the stomach lining which is why nausea is a side effect. And it is why many cancer patients get thinning hair (I'm going bald anyway!). Over the three hours of the infusions I do get weird sensations physically but this is all very tolerable. I can get juice and snacks. Finally they give me my big fat injection of 5FU and hook up my portable pump that infuses a more concentrated solution of 5FU over he next 46 hours. I hop in the car, grab a steak and cheese sub from a little shop on my way home (I found out the owner had the same oncologist and went to the same treatment center for pancreatic cancer -- he recognized my pump!).

My first treatment was tremendously effective in killing the pain and discomfort I had been suffering for a couple months. While I was told that subsequent treatment would have no different side effects, I think because I'm much healthier now the side effects are different and more noticeable. I notice the problem with touching anything cold. I made the big mistake of drinking a cold glass of juice which chilled and tingled in my mouth and throat all the way down! I just have to learn a new routine over the f treatment days especially and to always have gloves handy. I didn't sleep well because the steroid gets my mind racing, and I have plenty to think about! I'm an early person anyway so this is a great time for me to write. I'm corresponding with several people (including Peter Hoover again) and working on some thought concerning "Authenticity and Synthetic Truths in Christian Theology and Doctrine" as well as "Historical Considerations Concerning the Early 16th Century Anabaptist Christo-centric Hermeneutic" Those are good ones to work on when one's brain is working on steroid induced overdrive!

I spent time chatting with Bootstrap yesterday afternoon and made other phone calls to confirm details of all the converging event that will see us move to Pennsylvania in the early autumn. Day three was my biggest crash day the last time (day 4 was supposed to be the low point) so I'm not planning much activity on Friday and Saturday except to entertain Dan and Wend Ziegler and enjoy Lobster with them at Want-Not Farm on the Dear Old Coast of Maine!
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Yesterday after my Chemotherapy I walked around my property bringing another lounge chair for my wife to "The Point" - the tip of our property that borders the salt creek and marsh - our physical connection to the sea. I then walked around Want-Not Farm (that's what we've called our place) breathing in memories and chatting with God. I sat on my front porch, sucking in the sunshine and listening to some music. I came across an old Bruce Cockburn song (when Bruce was a Christian) that was a favorite 40 years ago when Betty and I were Hippy Radical Evangelicals living on the (ragged) edge. The first line is:
All the diamonds in this world
That mean anything to me
Are conjured up by wind and sunlight
Sparkling on the sea...
That verse has always been descriptive of me personally since I became a follower of Jesus- nothing valuable to the world means anything to me - the silver in my precious wife's hair is all the silver I want to fill my hands with, the only gold, the sunlight through the haze of a pond where a swan greets my children.
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Tears welled up as I heard in every verse an analogy to my own life - I was simply astounded by how some of the phrases could have been written about significant events in these 44 years of my life with Betty. The next line:
I ran aground in a harbor town,
Lost the taste for being free
This is literally what happened when I met Betty in Salem Massachusetts as a free spirited hitchhiker 45 years ago getting married and starting the "long strange trip" with her.
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And the line:
Two thousand years and half a world away
Dying trees still grow greener when you pray.

Captures what is happening to me spiritually now. A dear sister wrote to me about "the new Wayne". Thank you all of you for the prayers that are making this dying tree grow greener.
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Valerie
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Re: A year of living.

Post by Valerie »

Wayne I really appreciate you sharing all that you do. It was difficult to accept what is happening to you, I had a hard time not insisting that it has to be God's will that you be healed. We never Force our will on God I just see so much value in a grandparent speaking into the lives of their grandchildren and sometimes I just don't understand when God calls someone home. What I'm reading in your post maybe realize that a Christian should teach people how we live, and even as important a Christian can teach us how to die if that be the will of God.

I hope you don't mind as praying that God will heal you but also realizing it may not be his will and this may be your appointed time at the end of this cancer journey. But I really appreciate what you are sharing thank you
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Valerie wrote: Thu Apr 15, 2021 10:44 am Wayne I really appreciate you sharing all that you do. It was difficult to accept what is happening to you, I had a hard time not insisting that it has to be God's will that you be healed. We never Force our will on God I just see so much value in a grandparent speaking into the lives of their grandchildren and sometimes I just don't understand when God calls someone home. What I'm reading in your post maybe realize that a Christian should teach people how we live, and even as important a Christian can teach us how to die if that be the will of God.

I hope you don't mind as praying that God will heal you but also realizing it may not be his will and this may be your appointed time at the end of this cancer journey. But I really appreciate what you are sharing thank you
Of course I don’t mind that my brothers and sisters pray that God will work a miracle to remove this cancer entirely from my body. That is also something I talk to God about. But I mainly pray that God will be honored through this, and truly He is demonstrating His power through many miracles that skeptics would call “coincidences”, but even unbelievers in our lives are acknowledging that it seems God is doing something.

I will write a post about that in the future. There really is too much to tell from discovering that the house next to our daughter (and grandchildren!!!) was going to go on the market this week (we’re working on a private purchase) to finding a realtor her in Maine who is with our old church (and I’m thrilled that he will get the commission/ glad to help his family that way.)

And God is healing my heart - which really needed some intervention on His part. I can say with all sincerity that this cancer is a gift from God, perhaps in a sense, it is God “saving” me, but certainly there is no doubt in my mind that He is using it to good purposes, and that brings a deep joy knowing that what I’m going through is not for nothing.
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Wayne in Maine
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Re: A year of living.

Post by Wayne in Maine »

Day 3 of round 2 of chemotherapy.

I was planning on going out with Betty after some Zoom conferencing with our realtor. Right at the end of that call my chemo pump alarm went off letting me know it was finished. Betty (who is a nurse) very gently removed the needle from my port and I never felt a thing (it’s a nasty looking needle - a big hollow hook actually!) It was nice for both of us that it went so well.

After that though I feel tired so I’m relaxing and planning on taking a nap. Day 3 is predicted to be my tired day which is why Betty stayed home from work - to pamper me. So I’m staying home while she does the chores and I study the insides of my eyelids!
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Bootstrap
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Re: A year of living.

Post by Bootstrap »

This has been my favorite thread on MN since it started. Thanks, Wayne, this is great.
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Is it biblical? Is it Christlike? Is it loving? Is it true? How can I find out?
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