Multi-Disciplinary Clinic
Four days after receiving the news that I had cancer we were back in the doctors office for four hours of what was referred to as a Multi-Disciplinary Clinic and consult. This time we met with a dozen different specialists as mentioned previously. It was a whirlwind of information that we tried to follow. The short and long term ramifications of the radical prostectemy was clearly explained to us, both the good and the bad. John Hopkins had many years of studies and had built a database of all of the men, their ages and the progression of their cancer when they were treated. The prospects of survival looked very, very good: 98%??? survival rate after 5 years and 95%??? after 10 years. This was the best news that we had heard. The downside was both the short term and long term effects of the procedure. Incontinence was a real issue that may not ever really get better. I may be wearing adult diapers or at least a pad for the rest of my life. Any physical intimacy with my wife would be over without medical procedures each time. The best option was not a good option. Unfortunately one of the real issues was that there would be a 76%??? chance that the cancer would spread outside of the affected areas and that I would still need at least radiation. Still I was very excited that the survival rates was so high with aggressive and proper treatment. Most of the doctors that met with us were good to clearly explain things to us. We were also briefly told about other possible treatments although more as an information item than an option. Most of the other options would typically be done with other doctors at different medical facilities. In order to have the high survival rates discussed in the studies we needed to follow the outlined plan. As they were the experts we relied on their recommendation.
After one doctor left another came into the room. We later found that 12??? doctors and specialists had met the day before and they had all discussed my case. After looking at all of the information regarding my situation, they came to the consensus that the outlined plan was the best for me: radical prostectemy with removal of all lymph nodes, seminal vesicles and surrounding nerves with a high probability that 3 months later I would need radiation. all of this of course came with the previously mentioned side effects. Numbly we agreed that we would proceed as recommended.
The Bone Scan
Before we could get too excited about my prospects of survival though we needed to see if the cancer had started spreading yet by having a bone scan. Once again this would normally have been done on a subsequent visit but due to the distance that we had to travel they were able to schedule it for the same day.
The procedure is painless as you simply strip and lay on a table while a technician watches a machine slowly scan your entire body. It took almost an hour for the machine to slowly cover my body from toe to head and I had to lay very still with absolutely no movement. I actually slept for a while, listening to the hum and whirl of the machine. The final results were fascinating. They could see that I had a broken collar bone, albeit 42 years before. The tooth that I had pulled a few months previous clearly showed as an issue. Wryly I smiled thinking about my previous self-diagnosis of an infection causing the high PSA. There were other interesting things that the technician pointed out to me or allowed me to ask but he would not offer any opinion at all of if there was cancer in the bones. We were left to wonder.
Our last consult with Dr. B followed and once again I was impressed with the facts that was presented and the confidence that I had in both him and the procedures that were being suggested. Fortunately the bone scan did come back negative from the cancer spreading to the bones. Had it spread to the bones the treatment plan would have changed drastically with the survival rates being dismal. We were relieved. He wanted to do surgery as soon as possible but we did need to wait for a month after the biopsy to give my body a chance to heal and for the swelling to diminish. Due to his schedule we were looking at 6 weeks before surgery. My oldest son currently lives in New York and was coming home to spend time with us during the annual deer hunt. The hunt was more of an excuse to visit. Although the doctor wanted to do surgery sooner he agreed to put it off for one more week until after my son would be gone. I didn’t want to spent the few days that he would be home visiting from the hospital room. We scheduled the surgery for Monday, October 28. If things went well I would be in the hospital for a couple of days and then I would have to stay in the area for another week until the catheter came out. I would have to then stay down for 4-6 weeks and would not be able to go to work. This concerned me greatly as I didn’t feel that I could be gone from work that long. After looking at the options I decided that I could work from home on many issues remotely, answer the phone calls and hire Jason, my son, to work after school on items that would require physically being there. He had worked for me before and was very competent. Although this would not be ideal it would work.
Emotion vs Logic
I have always been a logical person in most areas of my life. Interesting enough though emotion became part of where I was now. I really liked Dr. B and his staff and I had full confidence in them and the probability of living a long life. The data and facts that he presented was very impressive and he exuded confidence, a very good trait for someone in my position. I found that emotionally I was fully engaged with Dr. B and the treatment plan. My future looked good and I was relieved that it looked like I would be able to fulfill my obligations to my family and live. Being able to take care of my financial obligations and continue to watch my family grow brought a tremendous sense of relief.
My good wife Maili was a little less sure of the path that we had chosen. She was more concerned with my quality of life than I was. Still we had a plan and was moving ahead. It was now September 10, 2013, four days after we found out that I had cancer.
Telling my Family
Now that we knew exactly what was going on with my body and how to cure it, we decided that it was time to tell our family. The next day the opportunity presented itself with my only daughter who would be leaving a week after the surgery for a mission for our church for 18 months. As we started to tell her she didn’t act surprised and told me that she had known a few weeks ago about it. Even though no one had told her she had a feeling that I had cancer but that everything would turn out ok. I must admit that we were surprised that telling her turned out to be a positive experience, even a relief.
Next came my two sons who were still living at home, Steven being 12 and Jason 17. As we didn’t want them to worry I really downplayed the matter, simply telling them that I had cancer and we were going to have an operation to take care of it. Steven asked if I was going to die and I told him no that I would be fine. That was all that either one of them needed and they were off playing afterwards with no worries.
Scott was next on our list and although I had wanted to tell him in person we chose to call him on the phone. We were going to take Julie through a LDS Temple on Friday in Rexburg and Scott was going to be with us then. I didn’t want to surprise him at the Temple as we wanted it to be a good experience for everyone there. He was quiet for much of the conversation but did ask several questions afterwards including was the cancer hereditary and would he get cancer someday. He was concerned but he did take the news well and seemed to be ok.
Michael my oldest son was the last one to tell and he would be the hardest. Since he lived in New York City we would have to tell him over the phone. I had decided to wait until Friday night after he got off of work, which was usually after 10:00 PM for him, 8:00 for us. I wanted for him to have a few days to deal with my news and not disrupt him with his work. Since I didn’t message him until after midnight his time, it was a little too late as his wife was already asleep so I told him that I wanted to talk to him the next morning. He called me early on Saturday just as I was getting ready to run. The next hour I spent in the car talking to him on the phone. There isn’t really a good way to tell about news like this so I simply went through the process that had led us to this point. He took it well but had many questions including my treatment plan and suggested that perhaps I come to New York for treatment and stay with them. Since I was already completely vested, both in plans, the process and emotionally, I did not consider his suggestion. Although he was very concerned, we had a good talk and he accepted what I had to say as well as could be expected. In hindsight I wish that I would have talked to Kelsey his wife personally as she has spent most of her life watching her father struggle with cancer. It obviously was a very sensitive topic for her. At the time I was a little too wrapped up in my thoughts to think about this.
As previously mentioned the Friday of this week we were going to Rexburg Idaho to go through a temple with my daughter for the first time. She had gone to school at BYU-Idaho and loved the temple there. We took my parents with us in the car and met Scott there. I called a dear friend of mine while waiting for Julie and had a comforting visit with him. Bruce Olsen had been my Mission President in the early 1980’s. He had influenced my life then and continues to do so today. I felt that I should tell him about the cancer and did so. He had words of comfort that I appreciated.
We had a wonderful experience in the temple as did Julie. After we were finished in the temple and were outside, I asked my father for a blessing. Without getting preachy in this forum, members of The Church of Jesus Christ of Latter Day Saints believe that the same authority that Jesus Christ had when he was on the earth exists today. We believe that not only was the church of Jesus Christ restored but that the priesthood was restored. As a priesthood holder myself I have given blessings before and also been the beneficiary of blessings. I know the power and comfort that blessings can offer. We walked around to the side of the temple where it was quiet and not much traffic and I knelt on my knees while my father gave me a beautiful blessing. At his point he knew nothing about my cancer and yet he was spiritually prompted to tell me the very thing that I need to hear. I was told that I would always be able to provide for my family financially. That had been my greatest concern if I was to die, what I had fretted over the most. I felt a spiritual confirmation that what he said was true. Although he told me other things in the blessing that was what I needed to hear most at that time.
The last family member that we needed to tell was my parents. Since my mother tends to make the worst out of situations and since they are aging I was hesitant to tell them as I didn’t want them to worry but I also knew that they needed to hear it from me. On the two hour drive home from Rexburg I took the opportunity to tell them what had transpired, from the life insurance tests in May though now. Surprisingly they took the news much better than I had even hoped for. Although they did question our treatment plan they accepted what we had decided. As previously mentioned my father had prostate cancer and chose to receive treatment with a procedure called Brachytherapy. My mother suggested that I look into it, which is of course reason enough not to check it out (just kidding mom!). I explained that the cancer had progressed farther than my dad’s had (my PSA being 40 and his was 9) and that Brachytherapy would not take care of the problem. Although we had not discussed that as a treatment plan it was what I had believed since my PSA was approximately 350% higher than my dad’s had been. I later did question my dad about several aspects of his prostate cancer, the treatment plan and what I could expect based upon his experience. It was helpful to talk to him and gain his insight. He never did suggest that I try Brachytherapy but was willing to answer any questions that I might have.
That evening Doug and Clara, my in-laws, spent the night with us. They also had been to the temple that day with Julie. We took the opportunity to tell them our sad little story. Doug had also had a bout with prostate cancer and also had turned to Brachytherapy to treat it, which I had known. He did suggest that I look at it as an option but since I was both emotionally and mentally invested in our current plan I politely thanked him but declined.
Telling Others
The last few people that I needed to tell was the Superintendent of two districts that I worked at and a couple of friends. Steve was not only my best friend (besides Maili) but also the Principal at one of the High Schools that I worked at. We have quite a good history together and even purchase land together and built our houses on that land. He is the one that I turn to when I need to talk about something. As I took him in my office and told him that what I told him would change things forever, I am sure that he thought that I was moving and working elsewhere, a topic that we had discussed before. As the story was unfolded to him he took it hard. We had always discussed growing old together and sitting out on our porches, enjoying life. Now he could see that this may not happen. It wasn’t easy telling him.
I had a few other close friends that I felt I should tell, including an old mission companion who was just finishing a rough year and a half of going through chemotherapy for a different type of cancer. I know that the chemo had really wiped him out and was a struggle. I called him while I was attending a BYU Football game, knowing that he would also be there. Brent and his wife met me at halftime and I told them. They had a lot of really good advice as they had just gone through it. One of the big things that they suggested was telling others. Initially they had tried to keep it from others but both felt that was a mistake as the support that they received from others really helped them. This was the opposite of what my plan was but I did listen to Lisa’s advice that I needed to consider what my wife needed. We later discussed it at great length and Maili admitted that she did feel that she was on an island alone with no one to talk to. Talking to me about it wasn’t what she needed. I gave her the go-ahead to talk to others if she felt the need to. She chose to confide in her sister and one other friend and that was sufficient for her and met her needs. I was grateful that this was all that she discussed it with as I still wanted to keep it under wraps.
Even now two years later and very few people know that I had cancer. I have confided in a few more close friends but not very many. And yet I realize that most people find support from talking with others about it. That just isn’t me. I realized that the best answer is….whatever you feel best about. There is not a one size fits all when it comes to dealing with cancer.
I am only now telling my story because I think that it may help others going through the same thing. Most of you reading this won’t ever know me but you will know what I went through and hopefully it will be a benefit for you.