My Colorectal Cancer Story — Part 3
I’m still standing.
This article is the third in a series chronicling my colorectal cancer story. Part 2 was a high point, as the chemo/radiation treatments had limited initial side effects. Stage 3 Colorectal Cancer is an advanced stage of the disease, and I, like most, did not escape unscathed. A constant through the highs and lows was hope.
Chemotherapy and radiation treatments ended in March 2023.
After an MRI and flexible sigmoidoscopy biopsy, my surgeon indicated that he found remnants of scar tissue but no evidence of cancer.
Hurray!
My medical oncologist was less optimistic, saying I had a 90 percent complete clinical response.
Both agreed that I would go on a watch-and-wait strategy and a follow-up MRI in two months.
I had avoided the need for radical surgery (removal of the anus, rectum, and part of the colon) and a permanent colostomy, which my surgeon, a year earlier, had said I would need.
The thought of a colostomy was terrifying, perhaps due to my vanity. I did not want to deal with the hassles, anxiety, potential depression, or social stigma of an appliance containing stool attached to my body. Nor did I want to be viewed as less-than, someone to be pitied, invisible, discounted, and pushed aside because of thoughts that my expiration date had been issued.
I could handle cancer, but not a permanent colostomy.
A rude awakening awaited me.
The side effects of the radiation to my pelvic area kicked into high gear during the two-month wait-and-watch period.
Radiation has many lifesaving benefits. It, combined with the chemo, shrunk the cancerous tumor near my rectum. However, the follow-up MRI showed that the radiation had burned a hole in my urethra.
A recto-urethral fistula is the technical term for the condition. A fistula is a rare condition where waste and urine exit the body through the urethra or anus.
I now know that, in addition to a fistula risk, radiation of the pelvic area can result in many delayed (sometimes decades) long-term health issues:
- Bowel fractures
- Rectum problems
- Incontinence
- Urethral stricture
- Erectile and bladder dysfunction
- Infertility
- Vaginal stenosis
- Ovarian failure
My doctors were uncertain as to whether my earlier radiation treatment for prostate cancer contributed to the radiation having such a devastating effect.
My watch-and-wait period turned out to be two months of hell.
My sleep was interrupted. I was up every hour, not knowing whether I had to urinate or poop.
Interrupted sleep meant I was exhausted during the day, with little energy to do anything.
I thought the radiation and chemo, known to cause exhaustion, were the culprits.
At one point, I started to urinate out of my anus. My man-organ would often pulsate and rattle as if it was passing gas.
Something was wrong.
Two days before the end of my wait-and-watch period, I fell, hit my head, and was so weak and confused that I could not get up.
The Life Alert Commercial, “I’ve fallen and can’t get up,” became real.
I struggled on the floor in a semi-conscious state for what seemed to be 1/2 hour. Even with my wife’s help, I could not get up.
I, with my stubborn self, told her I could get up.
I could not.
If she had not been home and heard me fall, I could have died on the floor that day in Septic Shock and need of a blood transfusion.
My wife called friends who were able to help me up.
Because of my ego and feeling stable afterward, I pushed back on going to an emergency room.
Fortunately, I lost that argument.
I was rushed to the emergency room by ambulance. I recall being alert and talking to the EMTs about their work and part-time jobs.
The emergency room was jam-packed.
Arriving by ambulance helped me to be assigned a room reasonably soon after arrival.
In the emergency room, I was diagnosed with a critically low hemoglobin level, in Septic Shock, and needing an immediate blood transfusion. Two additional blood transfusions followed.
I remember getting the tremors, my whole body shaking uncontrollably.
I don’t know if that was the death angel knocking.
My wife prayed for the tremors to stop, asking God to calm the sea.
Her prayers and the blood transfusions caused the tremors to cease.
I also recall my surgeon arriving and saying my situation was dire due to sepsis and the fistula, and he wanted to schedule surgery for the next day.
Sepsis, if not treated in a timely manner, can cause tissue damage, organ failure, and death.
My wife and I, not recognizing the gravity of the situation, pushed back, saying what we had just experienced was traumatic, shocking, and overwhelming. We needed more time to prepare and assess the situation.
My surgeon was not happy with our push-back but eventually rescheduled surgery four days later.
The emergency room visit began a miserable 21-day hospital stay and a seven-hour surgery. I was given antibodies to fight blood poisoning.
During the early days after surgery, I was fed with a nasogastric tube.
The night before the insertion of the tube was anxiety-ridden. The anxiety was misplaced, although I do not wish the tube on anyone.
I lost 30 pounds during my hospital stay due to the nasogastric tube and liquid or nothing-by-mouth diets.
I was pitiful, in an infantile state, too weak to care for myself, unable to get out of bed or walk without a walker.
I recall two nurses standing me up in the middle of the floor to bathe me.
I also remember my brother trimming my beard and my barber coming to my hospital room to cut my hair.
I was bored and unmotivated, just day in and day out of nothingness, peering through a small hospital window while tethered to an IV pole.
I longed for fresh air and to sit on my deck with a seeping glass of cold orange juice.
Initially, I did not want visitors except my wife and daughter. I did not want to be cheered up. I did not want company. I did not want someone who had not walked in my shoes to tell me everything would be alright.
I was not depressed, but I was grieving my old life and wanted to fully process and come to terms with this radical change in my quality of life that was about to occur.
In time, I was able to accept visitors.
My wife stayed with me in the hospital for 17 days to assist the nurses, who were always short of staff.
My faith was tested during my hospital stay. I was overwhelmed, frightened, and afraid. Despite praying for a miracle, claiming victory, and believing I would be healed, there was no shortcut or magic. I had to go through the surgeries/procedures and associated pain and suffering to get to the healing.
God’s saving grace and mercy brought me through.
Today, I do not feel the pain.
“You have a lot of stuff going on in your body” — said my urologist the first time he saw me after the surgeries.
My initial surgeries included a permanent colostomy (the appliance I dreaded) and a temporary catheter.
My doctors later determined that I needed a permanent Suprapubic Catheter because of the damage caused by the fistula. The Suprapubic Catheter was required to redirect urine from the urethra, hoping the fistula would heal over time.
My urologist later advised that it was unlikely the fistula could be surgically repaired due to the scar tissue caused by radiation.
A year earlier, I pushed back because I was terrified of the thoughts of radical surgery and a permanent colostomy. Since that time, I have undergone two major surgeries, and I have two permanent appliances, a colostomy and a catheter.
In many ways, I am like a wounded warrior, except that I am fighting cancer. The perseverance badges (no longer appliances) reinforce my ability to persevere through life’s challenges.
Initially, changing and managing the badges were handled by my wife and or a nurse. I was overwhelmed. After a month, I decided it was time to man up and take over. Managing the badges is a part of my daily routine.
I know I can persevere through whatever new challenges I might face.
As I finished Part 3, I received the results from a follow-up sigmoidoscopy and CT scan.
The sigmoidoscopy contained terrible news, showing a high grade of colorectal cancer centered around the fistula. The Total Neoadjuvant Therapy (TNT) fell short of its promises, and I was not cancer-free.
In many ways, the chemo and radiation therapies did more harm than good.
The CT scan contained good news, showing the cancer had not spread to other vital organs.
What about the hospital stay, surgeries, and badges?
My surgeon advised me that the surgeries were not to cure the cancer but were lifesaving steps to fix the damage caused by the radiation.
He further advised that radical surgery, now more complex due to the fistula, was needed to remove the tumor. The surgery, a pelvic exenteration (PE), is not one that he has performed and could only be performed at a large specialty medical center.
PE is known for postoperative complications, a challenging recovery, and no curative guarantees. A consultation with a major medical center to explore PE and other options is in the works. Difficult decisions on what is best for my family and me must be made over the coming weeks.
I’m blessed to be alive and have the mental acuity to pen this story.
God has given me more time to get it right.
Five months ago, I was so weak I could not dress myself or walk. I can now ride a bicycle and recently took the Goldwing on a short spin.
It took a village to get me back to this point. My friends and family sprang into action to help my wife and me. They provided meals, helped with house maintenance, helped create a first-floor bedroom, and offered prayers and encouragement.
Cancer and the badges have limited me; however, they will not define me.
My near-term future will be filled with doing the things that give me joy.
I see a few road trips with my wife this spring and summer, walks on the beach (the sand is supposed to be good for neuropathy), visits and playing with the grandkids, and bicycle and motorcycle (my therapy) rides.
As for lessons learned, doctors can only provide educated guesses as to possible outcomes of cancer therapies. In April 2023, I was told I was cancer-free. That diagnosis was incorrect. Second, chemotherapy and radiation can have nasty side effects. Chemotherapy left me with incurable peripheral neuropathy. Radiation caused a fistula, which led to blood poisoning, multiple surgeries, and an extended hospital stay. Third, conquering your fears makes you mentally stronger and provides hope.
My journey continues.
I AM STILL STANDING!
Thank you for reading Part 3 of my colorectal story.
