This is a tale of a lengthy medical journey full of surprises.
**Disclaimer: images of a tumour are shown below.
It was May 11, 2016, the day before my birthday. I was explaining to my family doctor about this pain radiating along my lower abdominal area. Since I already had an existing umbilical hernia, I reasoned that that was the cause. My doctor claimed that the hernia should not be producing any pain, so he proceeded to press around the abdominal region for an alternative cause. I could see by the look on his face that he had found something. After probing, he indicated that there was definitely something present in the right lower section of the abdomen. He expressed concern and immediately recommended an ultrasound for a further examination. This would be surprise number one, leading me into a prolonged series of medical visits for the next six months.
Only a few days after the ultrasound, my doctor’s office called and suggested a quick return visit to discuss the results. This began to worry me. Why the rush? Upon my visit I soon found the answer. The ultrasound concluded that I had a serious liver condition. Two masses were found on the liver and cirrhosis was rather presentable. These results started a chain reaction of questions from both me and my doctor as to what might have caused this deterioration. I thought that because my father was an alcoholic and had cirrhosis, it might have been hereditary. The doctor, however, was doubtful of this. Besides, how did those masses develop? We were both stumped. He arranged for me to meet the liver specialist at the local hospital for a consultation. This was surprise number two.
I met with the specialist within a week. She too, was baffled as to the damage of the organ. She prioritized my name onto the list of patients scheduled for a CT scan on June 16th. The appointment consisted of a bone scan preparation injection at 9:00 a.m., followed by a walk downstairs for a CTscan. Afterwards, it was back upstairs to conduct the main bone scan. These three hours of appointments started playing with my mind. What would the scans find and what would happen next? I am generally very calm, but in those moments I was anxious to hear the results.
Two days later, I met with the liver specialist to discuss the findings. This seemed awfully soon to have the results processed. She was pleased to announce that I did not have any liver abnormalities after all. Of course, I asked about the earlier examinations, and she could not explain why they showed significant impairments. This was a relief to me. However, she then delivered surprise number three. The good news was I did not have any liver disease, but the better news was that I had contracted cancer. I shook my head in disbelief.
How could I have cancer? And, how could this be classified as “better news”? This had to be the ultimate oxymoron!
After I regrouped mentally, she calmly supplied the explanation. If I had those liver ailments, my future would be a constant array of clinical visits and a liver transplant which would seriously dampen how I live my life. The cancer, on the other hand, was treatable and the chances of a ‘normal’ life were considerably better. The lesser of two evils. That clarification hit home and relieved a lot of anxiety. But still, I had to deal with cancer!
The necessary biopsy was conducted. My next meeting was with the hospital’s oncologist. He confirmed the biopsy came back malignant, but I did not have a common type of cancer. It was diagnosed as a sarcoma, which he stated was quite rare. Surprise number four. Unfortunately, his hospital did not have the required technology to treat sarcomas, so I would be recommended to Princess Margaret Hospital. That was what I was afraid he would say, because I knew that meant unwanted trips down to Toronto. As he countered though, I would be better served there as they are recognized as one of the top cancer institutes in the world. I consoled myself by labelling this cancer as special; after all, who wants to have a ‘common’ cancer when they could have a rare, almost unknown type. This made me more accepting of the condition. Now that I knew what the illness was I embarked to learn as much as I could about it. Who knew having a serious illness could be so educational!
Time zips by when you have a busy schedule. It came time to familiarize myself with Princess Margaret Hospital (PMH) for an introductory session about treatment. The sarcoma was classified as a retroperitoneal, meaning it was located in the abdominal region, up against the back abdominal wall. They can be quite large because they nestle into the existing abdominal cavity. My situation called for radiation only, not the dreaded chemotherapy. That was a big relief. Before the radiation would begin, a CTscan at PMH would be needed. It was deemed necessary because they possessed more sophisticated imagery equipment and detailed results were required to determine the dosage of radiation therapy. That made sense to me, so the CT scan was booked for July 29th. On August 4th, at PMH, my radiation schedule was established. It would consist of 25 daily sessions, commencing August 15th, to shrink the tumour, leading to an easier surgery. At this meeting, Dr. Charles Catton, a notable radiation oncologist, stated that based on the CT scan, my tumour was the size of a softball. That was the next surprise. A softball? I played softball, so I knew all about the size. That’s pretty big.
Since the radiation segments were daytime affairs, this meant I could no longer work my regular afternoon shift. I work in a Receiving department as the Lead Hand and am constantly on the move. I felt badly about giving up my position, but as the saying goes, health is more important. Up to now, the women in the quality control department were noticing and commenting on my behaviour. They said I was not as energetic as before; wanted to know why I was sitting, when I never sat before; and even questioned if I was gaining/losing weight. Little did they know my legs were quite swollen from the build-up of lymph fluids, causing weak and deliberate movement. Funny, but the men in my department never said a word to me. Just proves, women are more alert to health issues than men.
I decided August 12th, would be my last day at work before undergoing the treatments. Since the women already knew something was wrong with me, I called everyone on the afternoon shift into the lunchroom at the beginning of our shift on August 10th to convey the news to everybody at once. My thinking was, since they were so concerned with my condition, they had the right to know the truth. I addressed them and broke the news about my health and what I expected to happen. Despite stating I did not want anyone crying over my illness, the tears came out from some women. Hugs followed, and even some men approached me and expressed their sadness. Our whole shift worked well together and these displays of affection spoke to the reason why– we support each other. That was a tough, emotional night for me.
The daily radiation trips became a drag. Not only was I becoming weaker and sicker, but those car trips into Toronto were cumbersome because of the congested traffic. The plus side was the driving service sponsored by the Cancer Society. For a nominal $100 one-time, upfront fee, they supply drivers who unselfishly offer their time to transport patients to and from medical visits. That dedication is invaluable to people who are not capable of getting to scheduled appointments themselves. Just fighting the endless traffic would have been too much for me.
Sunday, August 28th, contributed another surprise. I was consuming some chicken noodle soup when my stomach indicated it was time to rush to the porcelain throne. Who says chicken noodle soup is good for what ails you? After emptying my contents, I began feeling dizzy and promptly fainted. Upon wakening, a firefighter was shining his flashlight into my eyes. Off to the right were two paramedics. One of them took over and tried to get me to control my breathing. Instead I started hyperventilating and could not stop. This necessitated an ambulance trip to the emergency department. I waited quite some time after the initial assessment before being told a CT scan would be needed to determine the problem. Two or three hours passed before the scan was performed. After transferring to the sub-ICU station, at about 5:45 a.m., I was informed I had a pulmonary embolism, which is why I fainted. There I stayed for the next three days and was shown how to inject a needle into my abdominal area to release a blood thinner which dissipated the embolism. This incident postponed my daily radiation trips, meaning they would be made up at a later date. I met again with Dr. Catton and explained what had transpired the previous week. He then notes that my tumour was now the size of a football – NFL not CFL! Wasn’t the purpose of radiation to shrink the tumour, not expand it? I resumed the treatments September 6th and continued until September 29th. Whew, the last session!
For the following three weeks I recuperated from the radiation therapy. Fatigue had set in, but I wasn’t sick anymore. I just wanted to get this ordeal over with, but the surgery was not scheduled until November 17th. On October 25th, I met with the surgeon, Dr. Rebecca Gladdy. She is an eminent surgeon and specializes in sarcoma surgery. Sally Burtenshaw, the Clinical Research Manager of the Sarcoma Program at Mount Sinai Hospital accompanied her. We went over what to expect from surgery. We also discussed how I felt, both mentally and physically. The next day was my final CT scan of 2016, this time at Mount Sinai. This acts as the preliminary report for the upcoming operation.
November 15th was a hectic day. I was at the Toronto General Hospital for a two-part renal scan. The first was at 7:45 a.m., so I had a very early commute in the morning, which my brother drove. There was a two-hour wait until part two at 11:00 am. In the afternoon, I crossed the street to Princess Margaret and met with Dr. Gladdy. She prepared me for the surgery in two days. She was concerned about me, but I was concerned about how she planned to withstand 15 hours of surgery (another surprise). I was so glad to finally get home, yet all I could think about is the operation.
November 17th – the day had arrived! Admitting was at 6:00 a.m.; my brother came from Toronto, picked me up and drove back to Toronto (hospital). I was called to the operating floor around 7:00 a.m. After changing into the hospital gowns I was wheeled into the operating room at about 8:20 a.m. There were seven people gathered by my bed at last count. I reiterated how I wanted photos of the tumour, but nothing was promised. I then succumbed to the anaesthetic and let the operating team do their handiwork.
The next two weeks I faced: chest x-rays; walking to get the blood flowing again; doctors’ rounds at 6:00am; awakened to take my temperature (had trouble sleeping anyway) and drainage fluid levels measured every day. Back and chest tubes were removed on day 10. Oh, and the food was good (another oxymoron). Overall, though, the recovery period went well.
After exactly two weeks I was discharged (a pleasant surprise). The doctors were impressed with my speedy recovery progress. Once arriving at home, it took two people to walk me up our steep driveway. The first thing I did when inside was sit in a chair, where I would remain for four hours, because I was so weak I could barely move (unwanted surprise). I could not understand how before leaving the hospital I was walking the aisles with no difficulty, yet now at home I could hardly raise a finger. We live in a bungalow, but I needed to hold onto doors or walls to make it to the bedroom at the end of the short hallway. On top of that, I was prone to falling because I was so fragile. This is no doubt due to the estimated 100-pound weight loss (an unequivocal surprise) suffered from the beginning of surgery to the time I came home.
My discharge report read as follows:
Right adrenalectomy (adrenal gland removal); diaphragm resection (partial removal); resection of caudate lobe of the liver (between the left lobe of liver and the inferior vena cava); right nephrectomy (removal of kidney); partial psoas resection (psoas muscle considered one of the body’s most important); open cholecystectomy (gall bladder removal); suture repair of the vena cava, which had to be mobilized from the retroperitoneal sarcoma.
All in all, definitely a day’s worth of surgery!
When all is said and done, I ‘delivered’ a 20-25 pound tumour, measuring approximately 30 inches in length by 24 inches in width. I refer to it as ‘triplets’. It resembled a giant baked potato! I am so glad I asked for photos because knowing the sheer size of the tumour has become a hot conversational topic. The only reason I asked in the first place is because I was curious about what tumours were and what they looked like. Mine was an unexpected bonus!
Andy Bertrand lives in Brampton, Ontario.