One year ago today, sometime after 2:00 in the morning, I woke up my partner, Brian, and told him I felt I needed to go to the emergency room due to severe abdominal pains. I had just taken three consecutive days off of work because of the pain, but it had gotten unbearable. I couldn’t sleep. No position was comfortable and the pain was relentless. We got dressed and went to Meriter Hospital.
I was in the emergency room for about seven hours and at some point mid-morning they admitted me to the hospital. After an original diagnosis of constipation, what they found was that I had a stricture in my colon which was causing blockage. They didn’t know the cause of it, but didn’t seem to think it was anything too serious. It appeared to be scarring from a possible previous case of diverticulitis, something I had not previously been diagnosed with or aware of. They gave me pain medications and scheduled much poking, prodding, and testing, including a colonoscopy. At some point they scheduled an operation on the following Tuesday to take care of the stricture.
On Tuesday morning, I woke up to see a doctor I had not yet seen standing at the foot of the bed. He matter-of-factly told me that my biopsy results had come back and that to their surprise it was colon cancer. He said that didn’t really change the nature of the scheduled operation as they had to go in either way to take care of the stricture. He left the room and I was left alone to take in that diagnosis and to start processing it. I had never been afraid of getting cancer before. With my family history and my own previous heart issues, that was what I always figured I had to worry about with my health. With more than a dozen brothers and sisters in my parents’ generation, there was little to no cancer. There were some who died of heart issues, a couple who died of brain aneurisms, and several who simply ended up dying in their 90s of natural causes. Cancer was not really a thing in my line, but suddenly there it was, and I had to start processing that reality.
A few minutes after the doctor left, three nurses came in to see me. They told me they had just heard of my diagnosis and asked me if I needed anything from them at all, even if it was just to talk. They were so kind and were representative of almost all of the caring people who attended to me while I was hospitalized. At that point, I didn’t know what I needed, so I told them I was fine. After they stepped back out, I made a few phone calls to loved ones to let them know of the diagnosis. Then I was left alone with my thoughts. I wasn’t very worried about the surgery, as I felt I was in good hands, but fear crept in anyway. All the what ifs, such as what if it has spread, what if I end up with a colostomy for the rest of my life, what if it comes back after they get rid of it. Cancer is a scary thing. In some cases it can be taken care of quickly and never come back. In other cases, a diagnosis could just be the beginning of long-term health issues. In some cases, people get diagnosed and are dead within a couple months. One never knows.
The operation was rescheduled to Thursday. The doctors were very good at talking with me about choices and ramifications. I wrote a blog post called The Zen of Ostomy about how I would deal with having to wear an ostomy bag as it appeared that at the very least I would have one temporarily and possibly permanently, though nothing was really certain at that point.
On Thursday, Dr. King did the surgery, and he did put in an ileostomy. I was brought out of sedation and wheeled into the recovery room and I was told that it appeared they got all of the cancer, but still had to check the lymph nodes to see if there were any other indications of it. A short time after being in the recovery room my bowels began to open up repeatedly and I proceeded to lose a couple units of blood. This was the first of several complications to come. Quite some time later, they were finally able to remove me from the recovery room and wheel me to the Intensive Care Unit, which became my home for the next several days. Brian and my friend Jackie were waiting in what was supposed to have been my room for hours, and were finally told that I was in ICU.
That first night in ICU I felt incredibly alone and incredibly small in the universe, and I think for the first time in my life I had a real fear that I might not make it through the night. The inevitability of death is something I always felt I was at peace with for the most part, but the uncertainty about what might be next, if anything, is still a bit scary. Mostly I think I was scared about the possibility of leaving the world when I was alone. It was during the Covid pandemic and visitors were limited both in number and when they could be there. Brian was not able to be with me that night.
Nine days after being admitted I was moved back out of ICU into a room, but even then I continued to lose blood and then had a tachycardia event when they stood me up for the first time, something that a couple years previous had caused me to have an ICD (implantable cardioverter defibrillator) put into my chest. There was still a fair amount of pain by that time, though it had subsided, I was still pretty weak, but I was finally off of oxygen and several IVs, and feeling a bit better. However, just when things were looking better, several infections and edema decided to invade my body. I ended up on a liquid diet for 18 consecutive days because of all the complications and was in the hospital for 32 days, including some of that in a rehabilitation hospital.
Though I was still weak by the time I got out, I had built up some strength and did very well with the physical therapy and rehab, which continued at home. All of the X-rays and CT scans looked good and the lymph nodes and tumor markers came back negative. At that point it appeared there was no additional cancer, though the surgeon did say a follow-up colonoscopy would be needed just to make sure (that is coming up in just a couple weeks).
We met with an oncologist and decided not to pursue chemotherapy or other treatments. With it appearing that they got it all and with chemo drugs often interacting badly with one’s heart, we decided that with my heart history, the possible need for chemotherapy was less than the risk of what it might due to an already damaged heart.
In addition to the ileostomy, there were four separate drains in my stomach that had to be emptied and measured every day. They stayed in for several months and were removed one by one over a period of time. The ileostomy was not a pleasant thing to deal with, but with Brian’s support and love we handled it. He was incredibly helpful, generous, loving, and giving during the entire hospitalization and recovery time, as were the many friends and loved ones who gave me love and positive energy. The ileostomy did turn out to be temporary, but it was in for about half a year and finally removed in December.
It is spring now and I am no longer weak, though still out of shape from staying in bed for much of last year and the start of this year. In a couple of weeks, the next colonoscopy should verify that there is no cancer left in me, and then it’s just a matter of getting back in shape and living fully again. I look forward to hiking (a goal is to get into shape enough to hike up one of the bluff trails at Devil’s Lake State Park by the end of the summer), riding my bike, getting out and taking pictures again, and more. I am thankful for a surgery team and hospital workers who identified the issue, took care of it, and helped me every step of the way, from the initial visit to the emergency room to the last physical therapy appointment in my home. My personality helped also. I am strong, stubborn, and I am a positive person. I believe that positive attitude, as well as all of the positive energy sent my way from so many quarters, contributed greatly to my survival and recovery.
As I look back on the last year, much of it is a blur, but like so many other times in my life, I came out of it a survivor. I am working on a book on the various things I have survived in my life, from a near-death experience at two years old to surviving child sex abuse to alcohol recovery to a heart attack and more. But it is not just about surviving–it is about living life to its fullest, about experiencing every moment as if it is your last–because it very well could be–and getting the most out of whatever our limited time here offers us. I am thankful to have survived this most recent scare, but I will not let fear of sickness or death prevent me from living. I have this moment. That is all any of us ever really have. I will experience it as fully as I can and revel in it while I have it.