A message from ‘Bill’: My Story, My Journey, My Legacy

The Journey to the End of the Earth by paolosdala, on Flickr. Used under creative commons license.

Editor’s Note: “Bill” has made a choice to forego additional treatment in his battle with cancer. A 50 something man, he accepted the invitation of jewishsacredaging.com to write his story. He agreed to share what this decision means to him as he lives out his life at home, carried in love by friends and family. Thank you, Bill and your family, for sharing your life with us. It is a testimony to dignity and the “truth” in the everyday treasures of home, friends, family and love.

Rabbi Richard F. Address

The Journey to the End of the Earth
The Journey to the End of the Earth by paolosdala, on Flickr. Used under Creative Commons License.

It was the summer of 2008 and life was good. I have three sons who had or were about to graduate from college. The financial pressure was starting to ease and we had put a new kitchen and addition on our home. In addition, we rented a home at the Jersey shore along with good friends.

When I had my physical during the spring and told my internist about my cough he looked down my throat and dismissed it as seasonal allergies. The cough slowly got worse and my good friend and neighbor Joe (also a doctor and a very close friend) advised me to go to an ENT doctor for a more extensive look. I was scheduled for a camping trip with my three sons as well as my two brothers in law. This was our annual all male trip which we had done the past 15 years. No one ever missed it.

We were to leave on a Thursday but I managed to see my ENT on Wednesday. He found that one of my vocal cords was partially paralyzed. I did not have a sore throat nor loss of speech which puzzled him. He suggested a CT scan which I was able to schedule that evening.

On Thursday I was packing my car when I received a call from Joe. His voice was upset and advised me to let my sons go ahead without me. He also insisted I call my ENT. When I called my ENT he told me he wanted to meet that afternoon and to bring my wife Andi along. I knew this was something serious. When we arrived, we met with the ENT and saw the CT scan. The diagnosis was stage 4 lung cancer. We were both shocked. While I was never a physical fitness nut I was never a smoker. I learned that 20% of lung cancer victims were non smokers. I immediate learned that I was in a game I did not want to be in and was dealt a bad hand to boot.

Joe went to work and quickly got me an appointment with an oncologist at Pennsylvania Hospital who squeezed day me in the next on Friday afternoon. Dr. Mintzer, my oncologist is a compassionate but straightforward physician. He advised me that surgery nor radiation were viable options.

Dr.Mintzer turned out to be an outstanding choice. He was friendly and compassionate but knew where to draw the line. He also was an advocate of communicating by email which turned out to be a great plus. He was always reachable and I have never felt like I was intruding. He also had a nurse practitioner who is excellent and was extremely helpful when he was unavailable. Something to consider when selecting a doctor.

I began chemotherapy the following Thursday. I specifically selected Thursday because Saturday was when the side effects really kicked in. Since working was inportant wanted my bad days on the weekend to minimize my sick days at work. My first protocol was an infusion of carboplatin along with Taxol. It was a 6 hour infusion and the drugs really knocked me out. At night I had to put pillows between my legs to limit the pain in my legs. I was told my hair would fall out after 21 days. I was right on time. On day 21 while taking a shower my hair began to fall out in clumps. I took this poorly and realized I was vain. More importantly I gained an immediate awareness and sympathy for women who lose their hair because hair is much more important to them.

I was also told to report any problems with my feet because that was a known side effect of my treatment. Dr. Mintzer planned for 6 rounds of treatment. I had to limit the treatments to 4 rounds my feet were extremely sensitive to the protocol and I encountered nueuopaty. During this period I received a second opinion from University of Pennsylvania. The main tumor and many of the small ones had shrunk but I had to stop the protocol because of the neuropathy which never got better. After 4 rounds I switched protocols which was administered every three weeks. I lived on a 3 week cycle with the third weekend feeling the best. This was when we scheduled social events as I felt better as time passed on after each treatment.

I learned a lot during my chemo therapy infusions. Many of the patients were poor, had limited family support. In addition, many of the patients were much younger. I witnessed parents looking over their adult children with fear in their eyes. I reminded myself of this when I began to feel sorry for myself. Cancer can and does strike anyone.

My friends provided me with support and I cannot say enough about my wife who has been with me every step of the way. My wife and I made the life decision not to crawl in a hole but try to live our life as normally as possible. In the beginning we received many phone calls which were well meaning but overwhelming. Andi got the idea to email all our friends which really helped to give some space. We went ahead and bought cemetery plots. That may seem odd but it turned to be one less matter to be concerned about.

By the winter of 2009 the second protocol stopped working. Dr. Mintzer switched to a genetic treatment called Tarceva. While this drug was helpful to others it did not help me. It also caused an gross acne like condition which made me very self conscious. I never thought myself as being vain but waking up to blood spots on pillow increased my anxiety.

Sometime during the spring of 2010 I received a phone call from Dr. Mintzer. I was not available but he left me his cell number which meant it must have been important. I called him and he told me that there was an experimental drug being test tested that had dramatic success to those who had what is known as the ALK gene. Most of the patients were like me, otherwise healthy non smokers. We represent only 5% of lung cancer patients. While not a cure it could extend my life.

Andi and I met with Dr. Mintzer the next week. He told us that he had contacted a Dr.Shaw at Mass General in Boston where the clinical trial was being conducted but she had yet to respond. Like magic Dr. Mintzer’s cell phone rang and it was Dr. Shaw and she gave him the necessary information to see if I was a candidate.

Andi and I traveled to Boston to meet with Dr. Shaw. We were extremely nervous and a group of our friends paid for massages in our hotel to calm us down. It worked.

I cannot say enough good things about her. She is bright, compassionate easy to talk to and uses email which was so helpful to me when I was being treated by Dr. Mintzer. She also had a nurse practitioner who was extremely helpful. I was a candidate for the trial began treatment with Dr. Shaw on a drug labeled crizinotib.

It was around this time that I had to retire. I was not meeting my goals at work and the treatments became more demanding. This was a traumatic event as I defined myself as the provider in my house. In many ways I also defined myself by my work. Again, Andi and my friends came through with their love and support. I learned how to adjust to retirement as I assumed many of the household responsibilities. Andi works as a volunteer coordinator for a social service agency. I became a volunteer, made some new friends and felt better that I was helping others.

The drug was in pill format so it was easy to take. The trial was extended to the University of Pennsylvania and I switch my treatments there to minimize travel. As I left Boston I asked Dr. Shaw how long the drug would work. She said 9 months and she was right on time.

I returned to Boston. Dr. Shaw was now testing a similar drug known as LDK. The problem was the drug could only be administered in small doses as the clinical trial was just beginning. I resumed chemotherapy and radiation with the hope that the LDK was working and higher doses would be available. The chemotherapy increased my neuropathy in my feet and partially to my hands. I stopped the chemo in October but had to wait till an opening in the trial occurred in December. As you can imagine, the 2 month period with no treatment whatsoever increased my anxiety.

I travelled to Boston and stayed for a week as they tested whether I was candidate. While there I managed to reconnect to an old high school friend who I had not seen for 35 years. He was living in New Hampshire so I I rented a car and off I went. It was a great visit and we now keep in touch by email.

I began the LDK which shrank my tumors and was working well However in September I began to experience difficulty eating. In November choked on my dinner which lead me to visit Dr. Mintzer who reviewed my numerous CT scans. Apparently there was a tumor in my neck which was not responding to the LDK. He consulted with Dr.Shaw and they agreed I should receive radiation treatment on this wild card tumor. I received 20 treatments over 4 weeks and the tumor shrank and I was able to eat again. I learned that radiation is physically taxing and I was exhausted.

I had a brain MRI in March and a spot was discovered. I went through a cyberknife procedure which caused further anxiety. I think it may have worked as I have no further MRI’s.

This past April (2013) I began to experience problems eating once again. I contacted my radiologist who told me that further radiation of the tumor in my neck would not help me. The tumor was also resistant to LDK and surgery was not an option.

The tumor was pressing against my esophagus and closing it off. I could only eat very soft foods. A stent was recommended and I went in for treatment. What should have been a routine procedure was anything but. The esophagus stent pushed against the tumor which pushed against my wind pipe. I was put on a resperator and a second stent was required to allow me o breath.. It was touch and go for 2 days but I regained conciousness and wound up in ICU for 6 days.

When I woke up I could not speak as my vocal cords were paralyzed. I cannot swallow or eat and the tumor in my neck remains. I was offered a feeding tube which was not a cure as the tumor remains and is growing. There was one possible clinical trial but a candidate needs to physically fit to be considered a candidate. I was anything but. Just going to the bathroom is a big challenge. I could receive a feeding tube which required more surgery. It still would not shrink the tumor. Instead I opted for hospice.

I mistakenly thought the end would come quickly after starting hospice. While I have lost 50 pounds I am still lucid. This past month has allowed me to help my wife with the finance sand other matters which I always handled. It also has provided me with the opportunity to receive the love and support of my friends and family. That has truly been a gift.

I have learned some important lessons. I was always open regarding my treatment with my sons. In fact each one of them has travelled individually to Boston and met with Dr.Shaw during my scheduled appoints with. She has donated significant time with each so they understand what is happening I can’t thank her enough.

I have also learned that there is no right or wrong way to handle this illness. It is up to the patient to write their own story. Just because I chose to be open about my illness does not mean it is the right decision for everyone.

I have also learned that the value in life is not money but the legacy one leaves behind. I truly believe that my sons have learned that marrying the right person and having the right set of values is essential to leading a good life.

I continue to be amazed by my wife. She has risen to the occasion and has been a blessing in providing me with emotional and physical support. Some days I feel like I am cheating her. I remind myself that I did not bring this upon myself. It might have been different if I had been a smoker.

It has been five weeks and I am still alive.

Some days I feel that I am a burden but Andi has convinced me otherwise.

I have had the opportunity to meet and play with my two granddaughters say my good byes and reflect on my life.

I also have witnessed the depth of love of my family. That is something many people never receive.

For that I feel fortunate.

 


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1 Comment

  1. Webmaster’s Note: The comment below was received from an acquaintance of Bill who wishes to remain anonymous.

    As a colon cancer survivor who went through surgery, chemo, and radiation, I was deeply moved by Billy’s message.

    While we are not very close friends, I have known Billy and his family for many years and we have always considered each other friends. In the Jewish religion, one of the most important virtues that a person can have is a “good name,” and Billy, you certainly have a good name.

    That is and will always part of your LEGACY.

    When I asked for you legal and engineering expertise in purchasing a property, I had to twist your arm in order for you to take a fee, and we both knew that fee was about 20% of what it should have been.

    When my wife decided to redo our home using the same construction company that you and Andi used, you invited us to see the work that was done on your home. You even gave me some good tips (some that I followed and some that I should have followed). I have never forgotten how you went out of your way to assist us, and the satisfaction you got knowing that you helped someone.

    Whenever I think of you, or talk about you in conversations with my wife, the word that we often use is MENSCH.

    I wish there were more people out there like Billy.

    This is part of the LEGACY you leave, and I am sure that your children have been inspired to continue this Legacy.

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