Open Message to Cal Jones

It has been awhile since I last posted, but there have been some interesting developments. Our local paper wrote an article about this blog and prostate cancer. The reporter wrote a nice article and the response has been heart warming. I am grateful that the message of early detection had this exposure. Contrary to popular opinion I was walking my dog in the picture, not a muskrat.

I again apologize for an open message as the blog format doesn't allow me to respond privately to messages received in the comment section. Cal asked what the " Brotherhood of the Balloon" was all about. Since I was a rookie blogger I was not sure of the ground rules on some of the more sensitive information regarding treatment. I cautiously avoided describing one part of the treatment that would likely be unsettling for some readers. That said as fair warning, I want to answer Cal's question. In order to protect the lower intestines during treatment a device is inserted into rectum and filled with water, which absorbs any stray radiation particles. It is known as a balloon, and is inserted just prior to every treatment. It is uncomfortable, but I wouldn't describe it as painful. You are glad when it is time for it to come out at the end of the treatment. The "Brotherhood of the Balloon" or BOB was formed by a patient to provide ongoing support for proton patients. The brotherhood welcomes proton patients who have experienced the wonders of the balloon procedure. The website, protonbob.com, also provides detailed information about proton radiation treatment and descriptions of patient experiences for the general public. The website provided me with valuable information as I was making my decision for which I was grateful. Thanks Cal for your question and good luck. If needed, I can be reached at rlowe@nwi.net.

Open Message to Dave

I have discovered one of the problems with a rookie blogger. Dave wrote a comment and asked a very good question. The problem is that I don't know how to respond to him privately without his e-mail. I have decided to answer his question with a brief post, which is very likely not the best but all that I know how to do. Dave asked me why I choose to go to Southern California for treatment. There are a number of treatments available for prostate cancer, most of which are available in Wenatchee. Before I go further a quick disclaimer, I am not a trained medical professional and can only offer my opinions as to what I thought was best for me and my family. The choice of treatment for prostate cancer is a very personal one and I will share what I was thinking, and what I choose may not be the right decision for others. Being at Loma Linda I learned that every patient is different, with a lot of factors that need to be considered when selecting a treatment. The other thing that is important is that there is no treatment for prostate cancer that does not have a risk of side effects.

Now to answer Dave's question. The radiation treatment available in Wenatchee is the more conventional form of photon radiation and seed implants. The treatment available at Loma Linda is proton beam radiation, which utilizes a different kind of sub-atomic particle. There are only a couple of facilities that offer this kind of treatment and Loma Linda was the most experienced and had the longest track record, nearly ten years. It was my judgment that proton radiation treatment provided the same curative effect as surgery and had a lower risk of side effects. It is important to note again that any treatment has the risk of serious side effects. There is a much more scientific analysis of this treatment at the following website: http://www.llu.edu/proton/patient/index.html

The proton treatment has some disadvantages. Having to being away from home and work for about 10 weeks is difficult. The costs of travel and living are not paid by your normal health insurance plan so it can put a strain on your budget. It was not an easy decision, I have had a number of friends that have recently been treated locally and have been happy with their results. In the end the patient testimonials available at protonbob.com and the data indicating a lower risk of complications weighed heavily in my decision to go to Loma Linda.

Dave, thank you for your comment and I hope I answered your question. If I can help you further in some way please feel free to email me at rlowe@nwi.net. I know you are making a difficult decision about how to treat your cancer and I wish you the best of luck.

Mission Complete

It was not smooth, but the final treatment was completed on Thursday. Whoo hooo! The accelerator had broken down on Wednesday just after my treatment so all the gantries had been put out of business. We were busy getting ready for the trek home and did not realize that the outage was expected to be for an extended period of time. We went to the Wednesday night patient support group meeting and I had just given my brief "graduate" speech when it was announced that the machine was down for an indefinite period of time. There was stunned silence in the room as people realized what that meant for the four of us that had one foot out the door. It also meant that people that had not gotten a treatment that day were looking at the dreaded "double dip", two straight days without treatment. They requested that we be patient and wait for them to call us before coming in for a treatment. Since my treatment was scheduled very early in the morning I decided to follow my morning routine and hope for the best. When I arrived at the infamous Level B I was greeted by an eerie silence, only low background music that I didn't even realized played in the waiting room as it is usually very noisy. It was Carly Simon and apparently, after all these years, she still doesn't have time for the pain. Speaking of time, it looked like we were going to have a lot of time as the technicians told me that it was one of the main magnets that was down. It was overheating, which indicated an internal short. The treatment staff began to determine what the patient sequence would be when the machine came up. First came the children, then any new patients that were supposed to receive treatment the previous day, then next came anybody that had not received treatment the previous day. This made logical sense to me but was relatively bad news as it looked at one point like we may have to stay over the weekend. When they explained the situation to me, I thanked them for working hard for everyone and trudged back to the very empty apartment. This had to be the low point for the adventure because when I got home it was clear that Ruth had either a case of the flu or some kind of food poisoning. She was not feeling well and even if I had gotten my treatment it was doubtful if we could travel.

By Thursday at noon things started to turn around. Ruth had been able to sip some 7-up and keep down some crackers. I talked to my technicians and they were thinking the repairs may be complete within a couple of hours and they wanted me close by. I went back in, and all the children who were being treated for cancer were in the waiting room. My stomach did a couple of flip-flops seeing them all together as I had only seen a couple of the children in the early morning. They had decided that they were going to treat anyone with only one to go after the children, since they had more treatment slots available than they had expected. It was odd feeling as I walked out of Gantry #3 for the last time, it was more numbness than the exhilaration that I had expected. I was very moved by the kindness of some of my patient friends who waited in Level B to wish me well and briefly celebrate my last treatment.

When I got back to the apartment Ruth was feeling a little better so we finished packing and headed across the north edge of the Los Angeles basin to catch I-5. It was somehow fitting as the smog was very dense and had a noticeable effect on our eyes and lungs. As we climbed the Grapevine hill out of Los Angeles the air quality improved as did our spirits. The weather looked good all the way home and we felt confident the trip would go well, if there were enough rest stops along the way.

After a short night just north of Sacramento we blasted home on dry roads and clear skies and arrived at Wenatchee at 9:00 pm Friday night. The final tally was about 1200 miles in 22 hours of driving. It was great to be home, I don't think it ever looked so good.

I will put together some thoughts together early next week as the final post on this adventure. Right now I am going to walk through the house and savor the feeling of being home.