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

A look back at Autumn

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November 15, 2016

Since my last post much has happened. My PSA has done a roller-coaster set of readings. Down to about 30 and most recently (Nov 1) up to 37.  Part of the decline to 30 from earlier 45 was that I got chemo and a Lupron shot at the same time. Lupron helped some, which means that some of the cancer in me is still susceptible to hormone therapy but obviously quite a bit is not.

The round of chemo has kept my PSA down so I have continued past the originally scheduled 6 sessions. I now have had 8 and will have the ninth on November 28. It is not clear that there will be a 10th but I expect that there will be.

This round has been hard on my stomach and lower GI. I have had stomach discomfort, diarrhea, and some constipation. These side effects are draining. They take the oomph out of me.  Usually they occur about days 7-12 of the cycle. I work hard to maintain some exercise, trying to get in 2 miles walking a number of times a week. I am skipping it today in order to write this.

I found myself buoyed up when the PSA dropped from 45 to 30. I know not to count on that drop as an indication that further drops are coming, but it was a relief. I had spent much of the autumn working on end of life things and that task is also draining. But we have most of that set now, my end of life celebration, our money, the house, clarity with the kids and immediate family, cars, house repairs, yard changes both completed and ordered from the landscaper in case I am not here in the spring. I have felt less down these past few weeks and that is a fun feeling, sort of like the feeling I used to have about how good it felt not to have a migraine.

During these weeks I get rock climbing when I can, no longer once a week but still every other week.  And as I have said in these pages many times, I can’t let this condition turn me to, well, a pity party. We have a grand Thanksgiving weekend coming up, visits from old friends, from family and a meal on Thursday at one of Minneapolis’ finest restaurants, Mannys, in has now become a tradition. I keep up with my German, though right now it feels like I am at one of those plateaus that I would like to rise up from, but that is not happening quickly. Our Christmas plan is to spend December 23-30 with all the family in a villa in South Padre Island. What a kick that will be. We have never done that before at Christmas. I am really looking forward to that. 

The work with spirituality has also plateaued. I have read some fine books and have a new perception of religion in general though I am still working on the meaning not just of spirituality but of living spiritually. One of the touchstones of such living is connection, which I am finding hard to define and realize. It is easy to define connection but what does it mean to be connected to others and other things? The answers of course can be worked out rationally and easily but the emotional (or realized) meaning of those answers is much harder for me to achieve. I have enjoyed meditation which I began about 2 months ago. In the short term it is pretty amazing in its ability to effect calmness. I like that. But I am not sure of the long term goal of meditation. Is it supposed to lead to the traditional mystical experience? To the dissolution of the ego? Are there plateaus in the practice? I am certainly a beginner and I have no answers to these questions.

Oh, the photography. What a joy. I have completed my 366 project. I certainly received many supportive comments and I have posted all 381 photos in an album on Facebook. I have also written an essay about what I learned from the project and probably will post it on this site in the near future. I loved the awareness and sense of harmony with the seasons that the project caused. Preparations continue for the show I will have with a local painter who is rendering a number of my photos. I think that show will open in the mid winter. My photo group is a great source of satisfaction. I love the discussions of each other’s photos. I am amazed and delighted with what we see in each other’s work. Our work is available on Flickr as Red Cedar Photographers if you would like to look.

Photography is a kind of meditative practice. The practitioner must be aware of and focused on the image, which is akin to breath. I have a ways to go with this thread of thought, but I enjoy it and will get there.

Enough for now. Thank you for reading.

     

From a letter to a friend on spiritual reading

Thanks for the long email and the discussion of spirituality. More on that in a moment. I have been so long to write because the last chemo went after my stomach and lower GI. First diarrhea, then constipation, all accompanied by stomach discomfort (as in rice and apple sauce sound about the best for this meal) and weak legs. I was reminded of the ditty in Steve Martin’s Parenthood where the kid sings When you’re sliding into home and your pants begin to foam—diarrhea.

Tomorrow it is the oncologist and then chemo again on Wednesday. How often do you meet your doctor(s)? Today I had a blood test to determine my PSA level. Down from last time is good, up is really bad. I find it quite stressful to wait around to hear the number. It often reminds me of the time I opened the letter to tell me whether I had passed my qualifying PhD exam.

To offset the side effects I have begun acupuncture once a week.  I enjoy the sessions but I am still not sure that the procedure is working. One nice thing is that after the needles are inserted, I am left alone in a darkened room with woo-woo (as I call it) music, usually something that sounds like South American flutes. I find it easy to drift off into a quiet revery.

Well, on to spirituality. I have a way to go I can see. I read some of Honest to God by John A.T. Robinson, some of the Varieties of Religious Experience by William James, the Seven Storey Mountain by Thomas Merton and the material you sent me including the last half of Life After Death and the excerpts from the Gita that you sent me. Merton’s story is an interesting one of the long experience of conversion and the difficulty of finding something to commit to, but, lord, it is old school Catholicism. All the world is evil and only the God experience is worthwhile.  I am not there. (Merton though seems very close to your view of the world as hell, the abode of senseless suffering.)

What I see in all the others is the sense of two worlds (or orders of being?) that are actually one, or can finally, with work in most cases, be perceived as one. Well I am not there yet either. I can understand the perception, the sense of meeting something other, of entering a timeless, noetic world, but I guess I have no faith. If faith is the evidence of things unseen, and if on the basis of that evidence, you commit, well, fine. But I have a ways to go, a long ways.

As I read I became more aware that spirituality can be active or passive. Passive is the openness to the experience of awe and wonder (as a good friend put it). So it is the sense that beauty, say the pattern of clouds yesterday, that engages not just an “oh pretty” or even a metaphor of some kind, but just that sense of wonder. Active is to seek the spiritual experience. That seeking appears to run the gamut from saying prayers or having some kind of regular thought/action about the spiritual world, to doing the kind of extreme actions designed by saints and recorded in various Ways of the Spirit rules.  So I got that far. But all the intellectualization of the issue seems to me to be the wrong path. I am still looking for the something inside me that will make itself known and that I can feel comfortable with, or at least willing to explore more. I have to reflect on the Upanishad excerpt you sent me.

Thanks for listening to that. I know you have worked on this part of your life for years. I am so impressed by that.

You mentioned in an earlier letter or email that you have started to write about your life, a memoir or an autobiography. I hope you are continuing with that project. You have so much to tell the world.