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.

Medications to ease stomach GI discomfort

Here's what I am doing to control the stomach GI discomfort that comes with prostate cancer in the abdominal cavity. Every day I take 3 ondancetron--at breakfast, about 5 pm and in the middle of the night. I also take a protonix in the morning. The ondancetron has eliminated the vomiting that I experienced in January. The protonix keeps the acid stomach under control. I also take a tablespoon of fiber powder (Benefiber Healthy Shape Fiber Supplement) dissolved in water every day. The fiber has largely ended the weakness in my legs that I felt every time I defecated. However, it also has caused constipation.  I still poop every day but it is a slow process with a number of wipes. The last thing in this list is that I have a paracentesis regularly to drain all the ascites out of me. When my abdomen fills up with ascites I have pressure on my stomach reducing my appetite. I have had the paracenteses either every week or every two weeks.

I detail all this because it took various doctors a number of weeks to get me to this regimen. If this happens to you ask about these medications as soon as you can.

Decision to refuse clinical trial

On March 3, 2017 sent out the message below.  It was a difficult decision but one I am comfortable with, at peace.

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Hi all, Here is my update. I will get to my physical and emotional report in a moment, but first my decision and why I made it. I have decided not to pursue a clinical trial in Texas or anywhere. The trials I was looking at dealt with the immunotherapy drug ipilimumab. After inquiries and research I have been unable to find any data that convinces me that I should put myself and my family and friends through an extended program. I could find no data that showed that I would have a recovery chance (or extension of life chance) from it. I also found that one of the side effects is difficult stomach issues. My stomach has hurt for the past three months; I won’t add to the discomfort.  When I checked with the program at MD Anderson in Houston about the results that they are seeing, I was told that they did not have any data that they could share with me.   I also checked for relevant programs at the U of Minnesota, at Mayo in Rochester, and a neat one at the Koch Center in Pittsburgh (they have an effective treatment for reducing tumors in the peritoneal cavity, for a number of cancers but not prostate. That phone call took less than five minutes.) And so, the Hail Mary is over. I guess  am not Aaron Rodgers. No PSA to report this time. The Doctors are finished collecting that data.

So on to what is a wonderful quality of life for me right now. Yes my stomach often hurts, I feel like I have to poop any minute now, and my legs are weak some days. Part of the stomach issue is the ascites that has to be drained out of me every so often (a process called paracentesis in case you ever need it for a crossword). But wth some very fine advice from several doctors and our dietician daughter-in-law and the care from Mary, I am eating better and enjoying it more. I have good days and bad.  I get my walks in as much as I can. I have had two exhibits of my photos. One just closed and the other is up into the middle of March. I have received visits and mail that are humbling and joyful. I haven’t responded to all of them but they touch me profoundly. You guys are great. I have continued to work on spirituality and am glad for the time I have to let my thinking develop. It keeps revealing itself and that is so fun. I have done a good deal of reading and also a lot of review of my own emotional experiences. I have a not-very-finished piece on spirituality if you would like to read it. 

The oncologist told me I had 1-2 months. Well, I got one down and hope that I can celebrate a few more first days of the month.

I will keep you informed as this progresses. I tried telling the cancer to go away but that didn’t work. I am not worried and I am not afraid. Actually I feel at peace. I couldn’t do this without you. You mean so much to me. I love you so. 

Hug the ones you love,

Dan