Today I rang the bell signifying the end of chemotherapy. It felt good. With 2016 wrapping up, it’s hard to believe what a year it has been. A memorable one would be an understatement. Never in my life with my genetics did I worry about cancer. In the back of my mind, I knew my dad had prostate cancer in his young 60s, but my PSA's has always been normal. Even in June it was 3.0, which is normal.
Nevertheless, a voice in my head told me to be careful. So I saw my urologist. We talked, and he ordered a PHI, which is three tests in one. Off-the-chart abnormal. No active surveillance for me. I got a biopsy. I felt so special, but honestly with my medical luck plus a voice telling me “I will be with you” (the same voice in 1996, 2005), I knew. The rest is history, except this was an extremely aggressive tumor. Unfortunately, it had already spread to stage 4, which is incurable. That was July.
I have had dual chemotherapy with Taxotere and Lupron, and I can tell you I have been put through side effect hell. My wife, my rock, my support, my close friends, my colleagues, R.N. and M.D.-wise and former patients offered prayers...I cannot tell you how much that meant to my family. Nevertheless, I want to be honest (you can read my book Self Examination… Amazon and Westbow press are the best deals) you will understand what I have been through since 1996. The chemotherapy gave me bone pain so severe that some days I cried and could not get out of bed. My mind took a hit with "chemo brain" where memory and cognition were adversely affected. However, the two major problems were incredible fatigue and isolation, which will affect any human. My immune system shot to hell for a few weeks, as Taxotere was on a 21-day cycle. If your sagacious, you have already figured out I get my dose just as I start to feel well, and then get knocked down again. That was depressing and very hard on me.
So today, my doctor suggested I have 35 treatments of radiotherapy. Why? On pathology, after my prostatectomy, one node was positive with a tiny bit of cancer. Chemotherapy does not attack seeded nodes. I promised him I will see our radiation oncologist, but as an M.D., I have called many of my friends who told me that I am the one in a 1,000 to one in a 100: prostate-confined disease with nodal involvement. NO ONE really knows how best to treat this.
Chemo No. 5 was terrible, as I became septic on day seven with my temp hitting 103.8 and I was somewhat disoriented. It drained me; of course it was Thanksgiving when my kids were all home. They were great and understood as all three are in the medical field.
I'm done today, and rang that bell. I will go back to a more normal life with extensive monitoring, praying that my markers say at zero, my hair comes back and I lose the weight I gained. I worry, if the markers bump, (current PSA less than 0.004) that God will not let them. I pray twice a day for my friends who have prayed for me and helped me, including ones I have known for over 30 years, 40 years and 50 years. I try to stay positive, but I'm human, and there are rare days I do cry because I’m worried about my family fending for itself. I truly believe I will be fine. My strength comes from God who tells me not to worry about anything and pray for everything. I do.
My doctor still wants me to have 35 radiation treatments, and I will see the radiation oncologist again. Here is where philosophy comes into play. When is enough, enough? It’s individual. I have had health issues since 1996, including a rare central nervous system vasculitis (305 world-reported cases) and an episode of a near-death experience from this in 2005, not to mention dozens of two-to-five-day admissions for sepsis, shingles and on the list goes from my tamped down immune system to keep the Susac syndrome in check. This is all outlined in my book, but I, Tom Arno, the human being just like you, have had enough.
I will listen and make an informed decision as I always do. There are early and late side effects, some quite serious. I have prostate confined disease with a positive lymph node. That makes me stage 4! Here we are, six months later, finished chemo, and does anyone really know if there are any cancer cells in my nodes? And if so, which nodes? No one knows, so we Chernobyl the entire pelvis! “They do not!” said several world-famous oncologists I called and talked to. There is no right. There is no wrong. The guidelines say "CONSIDER radio therapy,” not DO or MUST HAVE radiotherapy.
I have a lot to be thankful for, people that care, family, former co-workers, high school buddies, ICU and telemetry nurses that write me, most I worked with for years. If I could hug you all, I would. I will keep you posted if anything changes. I decided early on to be honest and write about very personal data because of the misinformation on prostate cancer and PSA, not for ego, not for attention. I know for a fact that many cancers have been picked up because of these articles, and for that, I am grateful.
I rang the bell today, I am in remission, but as you can see, the battle is not over.