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.

Is it only two to go?!

Treatment number 42 is in the bag, only two remaining. The technicians were kind enough to take some pictures today just seconds prior receiving a treatment. Across my head you can see the laser lines that they use to begin the alignment prior to the beam starting. The black box is the CT scanner that they use to do the final alignment. This rotates 90 degrees each treatment as they shoot a shot from above and from the side to position the nozzle located on the left. This particular treatment was unique as the machine delivered about 7 "beeps" and then was silent for quite a while before it finished up. The key word there is FINISHED.

This will likely be the last post from Southern California. We returned the equipment today that gave us internet access at the apartment. We are posting from the library in Redlands, CA, a very nice facility with beautiful architecture. There are a number of "last times" this week as we get ready to head home. We will be going to the Tuesday night potluck for the last time and it is customary for the "graduates" to give a short speech.

There are four of the morning group that are finishing this week and we have all been plotting our trip home. One of them is from Woodinville,WA and they are going to take a slow pace along the Pacific Coast Highway for about a week. Others are stopping along the way to see the sights, however we have chosen the rapid deployment strategy and see how long we can drive in two consecutive days. We are ready to be home and hope to make the trip in two long days. The weather along the way has to cooperate, and so far it is looking good, but not great.

Thanks for the kind notes and thoughts you are sending our way. They mean a lot to us.

Clubhouse Turn

The week ended on a high note as treatment number 40 was completed right on schedule. The technical staff had worked very hard Thursday night to make all the necessary repairs. Everybody, patients and staff, seemed relieved to have the machine up and a weekend in sight. There are only 4 treatments remaining, if everything goes well we will be done Thursday morning. The side effects so far have been very mild, most noticeable are small round "sunburn" marks on both hips. They are not painful, but a gentle reminder that this is the homestretch as most patients don't see these until the last week. We have been going out to nice dinners with a number of patients that are finishing at the same time. These dinners are very festive as we are all glad to be going home. After we get home from dinner I do have some melancholy moments as these people have become good friends, I will miss the daily contact. They have led amazing lives, and more importantly have a forward looking outlook that is an inspiration for me.

We headed to Encinitas on Friday for the day with the family. Piper continues to grow before our eyes, the time we have spent with her and her parents have been one of the blessings of this adventure. Speaking of adventure, on our late evening drive back to Redlands we made a wrong turn and were headed to Mexico on I-15. We were listening to a book on tape, and I failed as the copilot as I had dozed off just as we were making the exit. I woke up a bit later and saw we were on a 6 lane highway, with another another 2 under construction. Through the post cat-nap fog we were able to turn around and make it home. We have decided that we are going to do a bit more pre-flight planning for the trip home. We have also decided that if we need me to be copilot that there will be a ban on the books on tape. Those babies put me down, and quickly.

We are beginning to pack and prepare for the trip home. We were able to cram everything in the car on the way down, I am not sure it will all fit, we may have to figure out what Brown can do for us.

Dang Power Supply

We are headed down the homestretch as treatment numbered 39 was completed today. The countdown has not been easy as equipment problems have caused chaos all week. The most serious was when the power supply was the problem on Tuesday which has seemed to cause computer and equipment problems the rest of the week. I have not missed a treatment, but have had to be patient to get them done. If the accelerator was a football team it would have been flagged for numerous false starts. Yesterday my original treatment time was 6:15 a.m. and the treatment finally occurred at 8:00 p.m. In the meantime, there were a number of attempts that were foiled at the last moment by equipment problems. Things have been so smooth that I had forgot how hard it can be when you struggle to get a treatment. The worst was watching some of the people in the waiting area trying to get their very first treatment. I tried to counsel them to be patient, but it seemed funny that I would try and tell anybody about the virtues of patience. Chaos reigned again this morning as my treatment was delayed, with false starts and offside penalties, for three hours. I also am taking a lot of good natured ribbing about the fact that I seem to be in the building when problems occur.

Ruth and I had a chance this week to visit an Air Force museum near March Field. The museum was interesting as it had over 50 aircraft from WWI to present day. One exhibit detailed the exploits of a Thaddeus Lowe during the Civil War. He apparently was the first to use an aircraft, a balloon, to do reconnaissance during a battle. The exhibit described him as being hard headed, so I don't think he is related to our family.

We have begun to prepare for our trip home. There are about 5 of us that started just after Thanksgiving that will be completing next week. As much as I want to be home it will be difficult to say good-bye to some of these men as they have become good friends. It has been very enriching for me to spend time with them and I know the friendships will change as we all go home. It is clear that we do have a common bond that is strong as I have gotten calls from recent graduates to ask how I am doing and to offer encouragement.

Single Digits

Treatment number 35 was completed Friday, and it was a milestone as we only have nine to go. As one of my fellow patients said, " Single digits, must be nice". The week seemed to go really fast as the treatments were completed like clockwork. I gave up my early morning treatment slot for a patient that was finishing up on Thursday and it was interesting having a treatment in the middle of the day. Most of the other patients in the middle of the day are the newest arrivals, and they had a lot of questions for me because of my "senior class" status denoted by a red dot on my badge. There are so many things on your mind that first week and it made me appreciate how well my treatments have gone.

My fellow patients continue to be the richest part of this experience. One who finished treatments this week was a women that had a tumor wrapped around her spinal cord. I was amazed by her spirit and warmth throughout her treatment. Over 80% of the patients here are men being treated for prostate cancer. She attended all of the support group meetings and always seemed to have a smile on her face. I asked her if she got tired of these meetings listening to guys talk about their prostate. She answered that it wasn't about the content of the meetings, it was to be with people that understand what it is like to fight this disease. Her fight will be much harder than most of us but I think, and hope, she will win.

I also had a chance to talk to three former patients that were back in town for checkups. Two of them fly out in the winter, play some golf, and get a checkup. They were all doing very well which is good to hear. They took a lot of time to talk to a man that was in the waiting room considering this treatment. It seems like yesterday that I had all the same questions and insecurities regarding proton treatment; it's a difficult decision. At this point it feels like a really good decision for me.

I decided not to do the 1/2 marathon last weekend as my body, and my wife of 30 years, sent some pretty clear feedback that I needed to consider training for next year's race. Several people mentioned road work, along with the carbo loading might be in order. Peter and Karen participated along with 5,000 of their closest friends. They both said it was quite an experience as the race wound along the ocean in Carlsbad, CA. Peter and his friend Zeke also decided to do pushups at each mile marker, don't ask me why. I was proud of Karen as this was a longest race she had done. As you can see from the picture they received "participant" medals for their efforts.

P.S. Treatment 36 is completed, only 8 to go. A friend from Brewster, WA finished today and they are on the road home. They are great people and were fixtures for the morning gang and it was bittersweet to see them leave today.