This is a guest post by Kenneth G. Winters, a retired US Navy Chaplain from Massachusetts. Read his other post, “Life is meant to be lived, not just survived”, here.
One of my concerns about the first article I wrote for the Kidney Cancer Association was that it may have seemed overwhelmingly positive. Entitled “Life is meant to be lived, not just survived”, it described where I found myself at that time. Along the way, I have lost friends to various kinds of cancer, some after a battle much shorter than mine. My situation is as unique as we all are, and certainly, the journey through cancer has become more a battle for survival.
As I mentioned in the first article, I was diagnosed in April, 2018 with stage IV kidney cancer that had metastasized to many places in my bones. After the initial struggles for survival, I enjoyed over 3 ½ years of good health. I continued very active outdoor activities throughout early December last year. However, in late fall, I found out I had another small tumor on my liver and one near a lymph node. Surgery is not an option.
So, in December 2021 I left my 3 years and 7 months of immunotherapy infusions behind, a treatment that caused me very little discomfort. On December 29th I began taking a pill called cabozantinib (I call it the “Z” drug). I was in the “control group” of a National Institutes of Health trial to compare the use of that targeted chemotherapy with another group that was receiving both the pill and an additional treatment with radium 223.
Unfortunately, somehow my body has been compensating for the fact that one of my main arteries to the heart has been about 99% blocked for some time. Soon after starting the new drug, I experienced a serious heart attack. This left my heart pumping out about 19.5% of the volume of blood with each heartbeat, whereas normal is over 60%.
So, January 3rd, 2022, I had a procedure to clean out some blockages, including what the surgeon called “Roto-Rooter,” and two stents inserted. When I returned home on January 5th, my wife and I expected me to be quite limited, like the old man character Tim Conway used to portray on the Carol Burnett Show.
At first, I did get out of breath climbing stairs. That still occurs at times. However, I could immediately help with housework, and by the 7th was starting (with cardiologist approval) a moderate fitness regime. Getting around on the same floor presented no problems at all. From January through April, I was part of a Cardiac Rehab Study, using FITBIT and an at home distance program to see how effective that method of Rehab can be in contrast to traditional sessions. There was a setback, when once again, we tried a 2nd targeted therapy drug. I was back in the hospital, and my heart function had decreased to 31%, but no 2nd heart attack. Recently I had another follow-up echo-cardiogram and the number is back to up to 40%, where it will likely remain. That 9% makes a BIG Difference.
I felt it was time for me to give this updated information, because I realize not all Kidney Cancer patients have shared my long-term experience. My family, my physicians, my friends, and I are all amazed that I am still on planet earth. I have lost friends to cancer who were diagnosed long after I was. I’m still here, but not as strong as 6 months ago.
The days with severe chest and shoulder pain that led up to heart attack in January were alarming. I thought the pain in my right shoulder was due to the damage done by the metastacized cancer in my bones, so ignored it at first. I should have called 911 days before I was seen in the ER, but misidentified a clear cardiac warning as cancer-related. When the pain is different, listen to your body.
Secondly, I know that I am closer to the end of my journey on earth with cancer and now with heart disease than I have ever been. Over four years ago I was told hopefully had 1-2 years. My oncologist, Dr. Kriti Mittal, is giving me pretty much the same prognosis today, and I’m thankful for that. If my life expectancy had been estimated at less than a year, I would not have qualified for the heart procedure.
I did complete an at home (via video and phone contact) cardiac rehab program that was 3-months long. It went well, and I made gradual improvements. I’m back to riding not just my stationary bike, but also peddling outdoors as well as hiking and kayaking.
I’ve made some necessary adjustments since the heart attack and stent procedure. While I used to be able to swim a good distance (up to ½ mile), I have found that swimming is the hardest exercise for me, utilizing almost every muscle, along with the heart muscle. I swim short distances and parallel to the shore (not across the lake). My kayaking trips are much less challenging (no more paddling upstream-and shorter distances).
Another adjustment is that I have just ordered an e-bike. I LOVE mountain biking, just because of the change of scenery. I have found the steeper and/or longer hills were more than my heart should be dealing with. So, I now have an e-mountain bike that can assist me up those hills. My cardiologist and oncologist believe this is a wise choice.
Despite the obvious challenges and disappointments, my wife, Connie, and I have chosen to continue to look at life and the health challenges in a positive way, and walk by faith in our Lord, not by sight. It is not always easy, and we do get discouraged, for we are human. At times, depression is a better description of where I am at emotionally. I am quite sure I am going to become more limited in the future. Many of you can relate to that.
When I’ve walked in the University of Massachusetts Memorial Medical Center Annual Cancer Walk, I have walked as a “Survivor.” My goal is to keep on experiencing life as best I can as I fight for survival against this insidious disease. Until God calls me home, survival is a good option. I’m not exactly “LIVING” the way I was when I wrote my first letter to the KCA, in the sense of THRIVING. I don’t know how much longer I will be on planet earth, but then again, no one does. I do know that I will do my best to keep my body, mind and spirit up the best I can in the days to come. I hope to continue to encourage Connie, my bride of 50 years (August 19th), and be a blessing to others.
I have started preaching occasionally, which I had not done in a couple of years. That is a great joy to me. As a Christian and a pastor, allow me to share one thought from the Bible with you: Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
I believe that, on my journey, I have and am continuing to experience that promise. Blessings to you all.
August 2, 2022
This is a guest post by Nathaniel Stout, who has a stage 4 collecting duct carcinoma diagnosis.Read More