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

Tiredness, stomach issues and constipation

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While describing this discomfort is not fun, it seems an important act to relate what has happened to me in the last 6-8 weeks. Throughout the chemo therapy I had stomach discomfort and constipation issues.  I took various medications including Ondansetron, protonix, Miralax, and senna. None of them helped much. Starting around December 20 the problems got worse. I spent a number of afternoons taking naps in Texas. When we got home on December 31, I went to the hospital for extreme discomfort. I was in the hospital for three days. Then began my experience of ‘ascites management.’ Tired legs. Stated eating much less, lost body mass. Had a paracentesis January 1, January 13, and January 26. Spent January tired and sitting around.  Finally was put on protonix once a day and ondansetron 3 times a day. Then Dr. Saha urged me to begin eating more. I needed about 1800 calories a day and was eating way less than that. I began to do so. My energy picked up quite a bit. I ate ice cream and other high energy foods. I have begun to eat salads in order to get the fiber I need to create stool movements. That has finally happened, though the stools are very small. I have also begun to drink smoothies after our daughte-in-law Shana showed us how to make them. I have tried some of the energy drinks, like Boost, but don’t enjoy the very fake tastes of the chocolate and vanilla.

Letter to Suport Group January 11, 2017

I sent this letter to my family and support group on January 11, 2017.  The ongoing issue has been the stomach issues, which have affected my appetite and the amount I have eaten. As a result I have lost weight.  My GP put me on three ondansetron a day and one protonix a day. These two medications have reduced my discomfort and allowed me to consume many more aalories a day than I did during January.  I have the surgeon who conducts the paracentesis (drain ascites out of my abdominal cavity) to thank for the encouragement to eat much more than I had been.

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Hi, this report is a bit more difficult than ones I have previously written. So first some bad news and then some good. My PSA is 68 up once again. As a result I am finished with chemo. That leaves me with some difficult choices. I can try to enter a clinical trial in Texas (I will talk to them and let you know), I can continue on an old chemo daily pill, or I can join hospice. The oncologist thinks I have about 4 months left on this glorious earth. There. That’s the worst. At this point I do not know which I will choose, maybe several.

Since my last chemo session in late November I have had non-stop stomach and lower GI ailments that have left me feeling weak and quite a few pounds lighter. At one point I spent 4 days in the hospital as they worked on my problems. As a result I had 3 liters of ascites (a fluid in the abdominal cavity) drained from me and will have several more drained on this Friday. 

But we had a wonderful Christmas. The entire family gathered on South Padre Island in a big house (7 bathrooms, 3 kitchens, a pool) on the beach. We had a marvelous week sharing adventures of many kinds. What a wonderful gift we were all able to give one another. In the upcoming weeks I will have two displays of my photos in local venues.  One display is a picture from each month of my 366 project and the other is my images from the same project paired with the oil painting renditions of those images by a local artist. It is such fun to share my work. My niece, brother and sister-in-law will visit us next weekend and the first week of February we hope to be in Seattle for a much looked forward to visit.

I am not sure of any travel plans for our future. If my stomach quiets down we will try to get out to see whatever is interesting in the area.

We have some serious work ahead of us. Thank you once again, as I have said so many times, for your support. I could not do this without you. As I go forward I am not afraid and I am not worried.

I love you. Hug the ones you love,

Dan

Emaill to Suport Group Feb 4, 2017

I sent this post to my support group on February 4.

Hi, I saw both my GP and my oncologist Friday, Feb 3. The results of the meetings were not unexpected though a bit stark. The GP told me that I would be in ‘ascites management’ from now on. In other words the stomach issues are caused by ascites and are not going away. Periodically I will have to have a ‘drain’ or paracentesis. I had three in January, the last one being January 26. I am taking an anti nausea pill, ondansetron, three times a day. Currently it is helping quite a bit. Last few nights I even had cake and ice cream.

The oncologist was more bleak. In line with what he has been saying since November he now thinks that I have 1-2 months left. In November he thought 3-4. That was hard. He based his conclusion on the change in my physical state since November. I am now 20 pounds lighter than I was then. He also reviewed some clinical trials and suggested, without a lot of enthusiasm, that I could apply to several at the university of Minnesota. I will do so on Sunday or Monday. If those don’t work out, I might still try Houston, but I am not sure about that. He did say that if I am going to get into a trial that I need to do it quickly.

We had already come to the same conclusions that both of them gave us, but having them say it puts a kind of no-doubt-about-it on those conclusions. It is hard to say that those visits gave peace of mind but in a way they did. Things are clear to me. I have a few important decisions to make and will do so in the next few days. 

To end this on an upper note, this past week the photo group had an opening party for me at the Barrel Room. Almost everyone was there. We stayed for an hour and a half and had a wonderful visit. Several people wanted one or the other of the photos and so we gave them to them and marked them as sold.  It was such a fun evening, so full of love and giving. In my new sense of things, it was very spiritual. And if you want to see the photos of a guy who also did a 365 project, google That Tree and Mark Hirsch. He took pictures of the same tree for a year. They are fabulous.

I love you.

Dad Dan Doc

What I Learned From My 366 Photo Project

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What I Learned From My 366 Project

Dan Riordan

November 1, 2016

The photos from my 366 project can be viewed on Facebook, "Early Morning 2015-2016" https://www.facebook.com/media/set/?set=a.10101079650804782.1073741857.185105701&type=1&l=d2f0949e9c

In October 2015 I was diagnosed as having one year to live. I decided to have a project and settled on one that had long resonated with me—a 366 Project. I would take and post one photo a day for 366 days (2016 is a leap year). Actually I took between 3 and 15 photos a day and Mary, my wife, chose one for me to post. I selected Facebook as my posting site. I was comfortable with the process of posting there, though it is possible that Instagram would have worked as well. Regardless, I am happy with the decision. 

I set some parameters for myself. I would take the photos only on my iPhone 6, take them on the morning of the day I would post them, and take only photos of things I could see in or from my yard or along one of the three routes I could take each morning to buy the morning newspaper. If I were not in Menomonie, I would do the best I could with whatever was at hand in the morning. Most of the photos were taken within two miles of my house. The others were taken in Minneapolis, Waukesha, Cincinnati, Austin, Seattle, Port Angeles, Victoria, West Glacier and St. Mary, Montana. I tried to mix up the images so that I presented a range of topics, to avoid using the same locale over and over.  Some, however, like one of the hilltops along Rudiger Road just outside Menomonie, became favorites. Those I tried to present in various seasons and lighting.

The easiest place was our yard. We live on a high hill looking east over Lake Menomin. Sunrise pictures quickly became a staple for me. In the summer I often got up at 5, took the photo and went back to bed. In winter the sun rises about 8 making the dawn much easier to capture. Also we have a large native perennial garden with many species. Those became an interesting source of images in the summer, though I found pictures of blossoms more difficult to present than I had expected—I wanted more than a guide book shot of the plant.

I learned many things during the year, both about myself and photography. I think that the most substantial change was the way I “look.” I notice things differently. I notice form, lines, composition, story, compelling images. I am in the world differently than I was a year ago. A good way to say it is that I participate more. I see trees outlined against the sky. I see patterns, in clouds, in fields, even in flocks of birds. I don’t just see trees but notice their shape even the way the ends of branches interact with the sky; I don’t just see clouds but notice the patterns of light and dark, thick and thin.  

My composition clearly got better. I developed a finer awareness of leading lines, blocks of color and blocks of form. I learned to position those in the image so that they worked together to make a unified whole. As I got better at this aspect of my work the images became more meditative or compelling.

Coupled with expanded awareness, I found a willingness to stop, even go back, to select an image. When I began, I just passed those scenes, thinking, “Too bad I missed it. Maybe next week.”  The other day I backed the car up several hundred yards to get back to the correct position to take the photo with the effect I wanted.

I learned to accept the challenge. A year has a lot of cloudy, rainy days. It would be easy to just say I’ll post something from yesterday or skip the post all together, but I made myself seek those images and I found them. After a while I enjoyed the challenge of those days. I found puddles, drops running down windows, wet leaves and rocks all ready to be photographed.

I realized the value of the people who liked and commented on my photos. I could tell by likes and comments what type of images played best. I tried to repeat some of the things people liked: sunrises, lonely roads, people doing morning things (though I didn’t have all that many people because most of my photos were landscapes), flowers in dance step with one another, repetition in architecture. As the year progressed an interesting thing happened— I started to take photos with my audience in mind. They became something I offered to the audience. The photos were for them. No longer were the photos something to check off on my day’s list of duties. As this sense developed another change occurred. The audience became co-creators. As I took the photos I felt the audience looking at the scene and the camera screen. They were watching to see what I was doing. We took the photos together.

As my sense of creating for and with an audience changed, so did my sense of what I was doing with the photos. I started to render the mornings. The goal of the shots became to create a sense of the meaning of early morning. How could I catch that something present only in the morning, at sunrise, in the garden, on the road, over the hills, in the fields, in the clouds? I had moved from morning snapshots to, well, morning poems. I found my self driving around choosing a route because I figured that I would find the image--the poem--for this morning on that route. Often I passed up a scene because I could sense that it was wrong. It couldn’t present the core, she soul of the morning. I remembered those scenes, though, so that when the light was right, I could return to the scene to find it was the right one for the day.

My sense of connection changed. I am not really sure how to discuss this phenomenon. Connection means various things--aware of, joined to, emotionally moved by, part of. I have not worked out the complexities of this new realization. It implies a spiritual dimension that I discuss below. I do know that I feel closer to my locale and the things in it. I have had to find new subjects, not just repeat taking the same shots. I often thought that I had recently taken enough of the lake or the sunrise or the flowers and turned to other subjects, which I had to find. I had to develop a memory for what was out there on all the different routes. I learned the nooks and crannies of the routes, where I could safely stop the car, where the coots flocked on the water, where the perennials put forth new blossoms. Through the searching they became my hills, my roads, my lake, my geese, my blossoms.

As the project came to an end, I began to work with meditation. I took a course here in town led by friends and I have done some reading about meditation and about the relationship of photography to meditation. Meditation calls for awareness and a temporary release from external concerns to contact with inner worlds. As I experience meditation I am regularly reminded of the practice of photography. I can only take photos if I am aware, in the moment. I focus on the intricacies of the item, its internal lines, forms, tensions. Like breath I draw them in, snap the shutter and exhale them out. I find somehow the statement the item makes, the connection that it makes with me. This experience reminds me of walking meditation but I am not clear on the way this works. And while I can see how taking photos could be a meditative practice, I often take photos not thinking about how they are meditative. Viewers sometimes commented that the photos are meditative. Some even called them a manifestation of spirit or God. I intend to explore the possibility that these photos have a spiritual dimension, another power.

I feel satisfied. I have accomplished a goal, and the process has clearly given people delight. I have been asked to put all these images into a book. I would not put all of them in unless I could find a cheap way to print the book, but I might create a book that contained my selection of the best. I will have an exhibit this winter at a local bar/restaurant with another artist. She has chosen a number of my photos to render in paintings and I will display the originals. Our work will hang side by side or at least in the same room. I am quite honored by this exhibit because my partner is the former chair of the UW-Stout Art Department and she approached me to do this with her.

This week I met my oncologist who told me that I have already lived longer than he thought I would. This project helped propel me through a difficult year, kept me focused on something other than that depressing prognosis. I don’t know how long I have to live and I don’t know what my next photo project will be, but that project will help me fill my remaining time with joy and creativity.

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.