Things I learned as I lay dying

This is a dictation-driven post from Dan's bedside today. Part II, so to speak.

I thought the end meant that you just slipped away, the way Zeke did at the end of Parenthood. But that’s not the way it works. I feel like I’m zooming through a thin valley and it’s such a speed I won’t crash into the ground or fly above the edges of the valley. Each time, I see a sort of wall at the end of that valley that I’m going to crash into. But I get to the wall, and there’s an outlet, so I keep zooming along. I’m surprised, I didn’t think I could keep doing that.

The Home Health Nurse was here this week and described my faculties, “His language is good, awareness is good. He could go on for weeks.” I compare it to my friend Joe, who we visited right before he died. There was nothing there, we did not register at all. Two days later – he passed. The mind/language thing is like a railing. So, I’m going along the railing, interestingly, it’s red.  I’m going along that red railing until it breaks – and there I’ll be.

I wonder what that will be like?

(Dictated to Dan's younger son, Simon, on Wednesday, April 12th, 2017 at 6:30pm)

Caring Bridge site

Please be aware of the Caring Bridge site established for Dan (this blog is mentioned there):
https://www.caringbridge.org/visit/danielriordan
You will need to enter an email address, name, and password (and then confirm that you are over 13 and THEN confirm that you are not a robot!)

Thank you!

-Simon

Photos of tumor bulge

Another post on Dan's behalf (from Simon):
Dad requested that we photograph his belly to show the extent of the tumor growth. His daughter, Jane, took these photos and I am publishing them here to maintain the transparency that he has been striving for all along.
I am not sure what causes the smaller red dots that you see, but the tumor bump is especially visible in the first photo. Also visible are the grey Depends that he has been wearing full-time. The band-aid in the second photo is covering the insertion point from his last paracentesis (late last week).
 

Things I learned as I lay dying

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This is a dictation-driven post from Dan's bedside this morning:

• Loves spills forth from everything, splashing everything, joining us all together in one wonderful unit.
• Get rid of all snark – it’s the worst.
• Ya don’t just drift off.
• You’re not ready to go until your mind gets disorganized. Mine isn’t disorganized yet.
• Amazingly, discomforted pain can represent itself as color*. That’s just incredible.
• Every thing, little or small, alive or not alive^, is constantly sending you love - swim in it. We are all a divine union.
• God, I miss food. The other day I really wanted cranberry juice and a white cupcake with chocolate frosting. Sometimes peanut butter and jelly looks so good. I miss… bratwurst, pickle relish, and ketchup. I even miss baloney and pickle relish sandwiches, which I had all through grade school.
• Say ‘thank you’ all the time.

That’s enough for now. Post that on my blog, if you want.

• Last addition – Can’t believe how definite I feel about the things I feel. Nothing is tentative.

Email the list to Mom so she can send it out if she wants. 

Afternoon edits:

• The profuse richness of all things intertwined.
• Makes me feel like Scrooge McDuck. Can't get too serious about this stuff. (6:40pm - request to move this statement)

(Dictated to Dan's younger son, Simon, on Tuesday, April 11th at 10:00am; and 2:00pm)

Notes:

*Yesterday, Dad described pain in his thigh as ‘blue’ and described a recent trip to the bathroom as ‘green.’ This morning, I asked him why he used that description and he said that these two experiences presented as colors to him.

^Dad stumbled upon, and avoided, the word ‘dead’
 
 

Stamina and loss of body mass

I am now skeletal. I have lost 31 pounds since January 1, 2017. I now weigh 150.  During those three months I have had a lot of constipation issues and appetite issues. The constipation issues cause the appetite issues. During January I lived on apple sauce and rice. Then I started to eat ice cream and went on benefiber, a powder that gives bulk to stools.. Those strategies helped for a while  While this was going on I also started regular parecentesis to relieve the discomfort cued by pressure from ascites on my abdomen. I went from every two weeks to once a week and this week will begin twice a week. The cause for this recent change is that on Sunday after my birthday party on Saturday and at the end of two weeks of family visitors I began to throw up. Sunday it was lunch, Monday and Tuesday it was breakfast. During the week my weight dropped ten pounds to its current level.

During all these events and actually going back into the late fall, about November, I have been losing stamina. I first noticed that I would feel like not going for a walk  and b tired as I started out on the walk. Then as the walk progressed I felt a lot stronger. I went back to working out . I was surprised to feel the tiredness in my legs as I worked on the elliptical machines. Then at Christmas we went to Texas. While there I noticed that I was losing body mass in my arms. The first time was a shock. Now I am used to it.

The stamina issue is also related to the constipation issue. Often either before or after a bowel movement I feel quite weak in the legs and now sometimes arms. I don’t know why but this has gone on for months now.

That is it for now for the physical report. I write this and the last one I wrote to help people who are going through this process and would like some idea of what another person has experienced.

3-23-17

A poem and comments on end of life

Like the eagle high over the lake, I ride the thermals of your love, circling, above  the ground, its grasses and ponds, its cares and unknowns. 3-21-17

There’s no play book for what Mary and I are going through, even though thousands of couples do this every year. What do you do when you are the one dying? Others comes to visit, carry on upbeat conversations, send encouraging cards and emails. I am not sure what to do. I am making this up as I go, so is Mary. I try to ask questions of visitors, happy to have their presence. They go back to their daily lives, we go back to this unclear path,

As the end draws near, I also find that there is relatively little information on what is happening to me and what the end looks like. When does it start?  We had company for two weeks during March, wonderful people, my brothers Mike and Tim, Mike’s wife Joanne, their children. Then we had a houseful for my birthday. All the kids, the three Minneapolis grandchildren, April. I loved it, Thursday through Sunday.

Sunday noon I threw up my lunch. Monday and Tuesday I threw up my breakfast. Monday I had some diarrhea but today I had a large bowel movement with a stool 8 inches long. For the past several months my usual bowel movement has been a stool about 2 inches long, followed by a wipe which activates another stool, and then a third one. What is going on? Today, Tuesday, I had nothing until tonight when I had half a cheese sandwich and some apple sauce. Based on the vomiting, we called day surgery yesterday and scheduled a paracentesis today. There is only 5 days in between today’s and the last one. Today they drained 3.7 liters. Five days ago they drained 4.2 liters. Today I am weak. I mostly laid around. At the hospital I had to ride in a wheelchair to check in and to get to the surgery room. You see my exhaustion.

The question for us is Is this the beginning of the end? Or is this a let down after two weeks of intense visiting? Or is it caused by the ascites becoming more active and needing to be drained more frequently? We don’t know. The only information we have is that the oncologist told us that the end was a gradual slowing down. Well, that seems to be the case, at least for the past two days. I weigh about 160, though in the days after a paracentesis I often gain 5-8 pounds which I then lose as a result of the drain, about 2 ponds per liter. I have lost a good deal of body mass. I can nearly circle my arms with my fingers, a far cry from my gym-toned arms of just 6 months ago. My shoulders and upper back show a lot of bone, my legs are thinner, the bones more obvious.

I don’t know what all this means. Not anything good I am sure, but still there is no clear map to tell me that this landmark means I am this far from my destination. Why do I tell you all this? I m trying to set out landmarks for those that come after. I hope that after I am gone, Mary will complete this work.

3-21-17

A few things I have learned

Several things I have learned.
One of the most important things I do now is say thank you. I always said thank you a lot, but now I do it for everything. I receive so much help in many small ways and now I am careful to express my thanks.

I have learned to accept the outpouring of love and concern that is sent to me. I am thankful for it, but even more I accept it and let it help me deal with my condition. I was unsure how to respond to these expressions at first, but now I let them fill me with joy. I have also learned how grand people are. The cards, emails, visits fill me with joy and show me the fine side of so many people

I have learned to characterize many acts and bits of news as great or good. Before I just listened. Whatever was nice but that was about it. Now I invest myself in the news and respond in a positive way.

I really enjoy these three aspects of this time in my life and I am glad I have had the time to become aware of them and act on them.