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