I suppose my journey began when I was found floating in a little reed basket amid the marsh grass during a high tide in October. Oh, wait, that’s not me. I’m old, but not that old!
Who knows when this all started? Maybe it was back when I was 6,7, 8 years old and, like many other kids, went to the bathroom once or twice a week and produced giant toilet choking stools. There always seemed to be a reason to not go, like having to raise your hand in grade school to get permission. It’s like some sort of institutionalized anal retention. This was in the early to mid 60’s when a good diet was well done meat, potatoes and mushy vegetables. Growing up on the South Jersey Shore, everybody and everything was laced with a liberal dose of DDT in the name of mosquito and greenhead fly control. We’d ride our bikes behind the fogging trucks and run outside to observe the aerial spraying. Days on the beach never included sunscreen. Tan was considered healthy.
All those years of straining resulted in a severe case of hemorrhoids at age 19. I really didn’t have any clue or bleeding that I noticed. They just sort of popped out one day. My family doctor took one look and sent me off to a surgeon and a week later I was in the hospital recovering. I don’t think I’ll ever forget the nurse as she removed the packing saying, “You’re about to find out what it’s like to give birth.” Ouch. That was the summer of 1974 and I spent a few weeks recovering on the beach walking like I had 20 pounds of sand in my pants.
That’s when the bleeding started. I would always have some blood in my stool no matter what. Three or four years after surgery, I was still bleeding and scheduled for a sigmoidoscopy to inspect the surgical area. In 1978, it wasn’t a flexible sigmoidoscope. It was rigid, like a periscope. I remember the performing physician saying, “Whatever you do don’t move or this can kill you.” I was wide awake by that point! What did he find? “A couple of bleeding rough spots left from the surgery.” No biopsies; just a visual inspection. I was probably 23 at the time.
The bleeding never stopped. I’d have fecal occult tests but the blood was always attributed to an internal hemorrhoid based on the previous sigmoidoscopy. My diet had changed though. No more meat and potatoes. Much more fish, fresh vegetables, whole grains, low fat, fresh fruit. (I won’t mention the ice cream…)
In the meantime, at age 36 I had a basal cell carcinoma removed from my face. No problem, just 40 stitches and a half dollar sized excision resulting in an early face lift. It healed well and is barely visible.
Still, the bleeding continued. By age 44 or 45, it worsened and would sometimes include mucus and narrowed stools. I talked to my doctor and based on my history had another sigmoidoscopy performed. I was relieved to find medical technology had advance from the solid pipe. The flex sig again found a “bleeding hemorrhoid.” It’s strange how well you remember what’s said when you’re in such an uncomfortable position. “We don’t need to go any further. We know what the problem is and you’re too young for it to be anything else.” Of course, that’s what I wanted to hear and didn’t argue about stopping the procedure. It was probably a mistake.
Three years later at age 47, I was on a diving trip with my oldest son in the Florida Keys when I developed a perirectal abscess. I went to the local ER and was subjected to a digital rectal exam (ouch!!!), given painkillers and sent on my way with orders to follow up at home.
By the time I got home, the abscess required prompt surgery. It was done in the surgeon’s office with local anesthesia. I suppose my screaming must have been a clue that the anesthesia didn’t work. Driving home afterwards was a real treat. The abscess returned in a few days and required a CT scan before additional procedures. As I was ready to leave, after the CT scan, I was called back in and given additional contrast liquid so they “could check another area.” That’s when I realized something else was wrong. Sure enough the CT scan showed 2.5 x 4.5 partially obstructing mid sigmoid tumor. A full colonoscopy confirmed the diagnosis.
I was shocked and experienced the same reactions as probably everyone else. Why me? I’m too young for this. It can’t be happening. I don’t want to die. I’m eating a healthy diet. Why me? Why not that person choking down Big Macs and double fries? With two young sons and married for 23 years, I wasn’t read to go.
The surgeon working on the abscess scheduled me for a resection. While she was a competent, respected general surgeon who’d performed many resections, I chose to explore other options with three NCI (National Cancer Institute) centers within driving distance.
When I told her of my decision, she surprised me and said, “Please don’t worry about hurting my feelings because this isn’t about me. It’s about you. If you’d like to go somewhere else, please go with my blessing and know I’ll be thinking of you.” She helped me deal with the diagnosis, explaining that I had to accept it and rid myself of anger before moving on. Acceptance was the key and emotionally I was ready.
For me, part of acceptance was learning how to tell others. Only the first time was difficult and I quickly told everyone I knew. Within days I had entire churches praying for me and received calls of encouragement from people I’d not seen for years. I also began working myself back into shape, hoping to make recovery easier.
I started searching on the internet and found the ACOR list. It’s an online community of colorectal cancer survivors and caregivers. It became a refuge for me and provided so much support and guidance. We all spoke the same language and knew what others were experiencing. Within a week of my diagnosis I’d made arrangements to go to Fox Chase Cancer Center in Philadelphia where my pre-admission scans to the chest and abdomen showed several enlarged lymph nodes and a spot on my liver. Stage IV was a very real possibility.
The morning of my resection, my surgeon sent me for a liver ultrasound right before surgery. I can still see the expression on the radiologist’s face as she performed the ultrasound. She saw it right away, looked at me and said, “It’s a cyst! It’s just a cyst!” She was beaming. I was elated. Dr. Hoffman was laughing. Buoyed by the ultrasound and the knowing so many were thinking and praying for me, I practically floated into the operating room.
I’d just gone from a probable stage IV to a stage III. My entire sigmoid along with surrounding tissue and embedded lymph nodes was removed and I awoke without a temporary ileostomy.
When the pathology results came in, I could have floated out of the bed. Twenty eight lymph nodes found. Twenty eight negative. I had visitors and there were tears mixed with laughter everywhere. Dr. Hoffman just smiled and said, “Stage II.” Wow. From a possible stage IV and getting my affairs in order, to stage II. What a way to celebrate my wedding anniversary!
I remained an inpatient for just over a week and must have walked miles during my stay. One friend who visited brought a huge stuffed dog for me to use as a cough pillow. I walked the halls with the dog tucked under my robe with its head sticking out. After a few walks everyone knew me. I’d just smile and wave.
My recovery accelerated after returning home. After a week I was walking three miles and by four weeks, I was getting back to normal. I could tell I had surgery, as my bowels just seemed loose. I felt like a walking fishbowl. Next came chemotherapy. At the time, adjuvant chemotherapy for stage II was optional. We made the decision as a family and Andrew, my oldest son made it pretty simple. He said, “Dad if you don’t do it and it comes back you’ll never be able to forgive yourself and we’ll all be second-guessing. So, just do it.”
Chemotherapy was difficult even though it was just 5FU and leucovorin. The first two weeks were easy. I was still able to function and really didn’t notice any side effects other than that awful taste during infusion. After the third dose, the fatigue and nausea started and continued throughout the entire course. I’d have my dose on Friday and sleep most of the weekend and Monday. By Wednesday I’d start to feel better. On Thursday, I’d feel great, but then have to start all over again. Overwhelmed by thoughts of recurrence and continued chemotherapy, I was no longer smiling and happy and was rapidly descending into depression. A long consultation with my doctor resulted in me starting an anti-depressant. After a few weeks my mood changed for the better.
The nausea continued and got to the point where I’d get nauseous just pulling into the parking garage. Adavan relieved the anticipatory nausea but since it didn’t do much for my driving skills, I had to rely on others for transportation. I learned when people volunteer to help, they’re sincere.
The combination of fatigue and keeping a full stomach to avoid nausea began to add unwanted pounds. I wasn’t nearly as pleased as the infusion nurses with the constant weight gain. Since I had reactions to all the available anti-nausea meds, I kept eating to avoid feeling sick. By the time I’d finished chemotherapy, I’d gained 40 pounds.
I had an allergic reaction to compazine that resulted in facial paralysis. It wasn’t total paralysis, but I woke up one morning and my eyebrows were sticking up. It was funny. We had a good time with it. I had to reach up and pull them down. I’d laugh and the smile would get stuck. I had to literally wipe the smile off my face. Of course, the kids had fun with that, but after a few days I had to give up compazine.
Kytril and Zofran both controlled the nausea but resulted in migraine like headaches only relieved by opiate based pain relievers. Trading nausea for migraines wasn’t an option so I just kept eating.
During my fourth month, a routine dermatology exam revealed a suspicious mole on my back. Fortunately, it was caught very early was termed stage 0 melanoma or “cancer in-situ.” I took it in stride and we joked about me joining the cancer of the month club.
I became careless with the Celexa and had forgotten to take it for several days. With many SSRIs like Celexa, you need to taper off the dosage. A sudden withdrawal can result in shock like sensations which weren’t well documented at the time. I never connected the two; didn’t tell my doctors I’d missed a few days and the “zaps” put a premature end to my chemo. When my oncologist said two weeks wouldn’t make a difference and I was done, I floated out of his office. I was done!
About two weeks after that I was trying to get back to walking and running. I was walking down a hill and I suddenly couldn’t catch my breath. I thought my heart was going to pound out of my chest. I felt like I’d just sprinted two miles on a bike. It ended up being a symptom of iron deficient anemia. Although my hemoglobin levels were well within range during chemotherapy, my ferritin levels were far below normal as a result of the constant bleeding
Low ferritin can also result in restless leg syndrome, something I’d suffered from for four to five years before surgery. Once I started on iron supplements the symptoms dissipated. No shortness of breath, reduced RLS, and reduced sweating. It took four years for my ferritin to return to normal. The RLS could have also been symptom of the colon cancer.
Life began to return to a new normal. I tried to get back in shape. I stayed involved in the ACOR list. I’ve tried to help other newly diagnosed people by letting them know cancer can be overcome. Two months after chemo ended I had another surgery that finally resolved the abscess; the abscess that might have saved my life. (Is this where I can say we named it “my asshole buddy?”)
Since then I’ve been a colonoscopy evangelist, convincing many others to have the procedure. The most common reason for not having one is the fear of finding something. Finding something is better than not having a scope and leaving an undiscovered cancer to metastasize. I was fortunate. Mine went undiscovered and remained stage II.
Continued surveillance has proved beneficial for me. Eighteen months after surgery, a colonoscopy found a “severely irregular” polyp that most likely would have turned into another tumor.
A year after chemotherapy another basal cell cancer was discovered on my left ear requiring a plastic surgeon to reconstruct it. Up to that point I was the only one in my family to have any type of cancer. Somehow we’ve managed to laugh our way through.