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Dec 6, 2017 Latest post:
Dec 1, 2020
I was having some difficulties at work. My employer noticed it and called me into her office. I broke down, I was stressed. Something was wrong and I didn't know what. I told her that I had some blood in my stool. Right away she urged me to see our family doctor. (Something Lori had been doing for months leading up to this moment) problem is, we were relatively new to London and didn't have a family doctor. We had only been here for a year. This was 1995. My employer set me up with a family doctor in St. Thomas, Ontario which is where I was working. He ran some tests, couldn't really find anything wrong. Just asked me off the cuff "would you like to see a gastro intestinal surgeon?" I said sure.. I wanted to know what was happening. I remember him saying to me.. "we are not looking for cancer" , but he asked me if I had a history of colon cancer in my family. I said "I don't think so"
So I had a colonoscopy, they took a biopsy of something .. and in the days leading up to the results I was speaking with my mother. I told her that the doctor had asked me about my family history of cancer.. she informed me that the cancer my grandmother died from in the early 80's was colon cancer.. she was 66 years old. She also had it in the 60's. And then.. a few days later towards the end of May.. I got the news. Colon cancer... at the age of 28 .. guess what folks.. it's not an old persons disease.
The next few months were a whirlwind. I met with a surgeon in St. Thomas who was 100% convinced that I would need a colostomy. I wasn't ready for those words. We ended up moving the surgery to London because the London regional Cancer Centre is minutes away from our home. There we met a fantastic surgeon Dr. Engel. He told us he would do whatever he could to prevent me from having a colostomy. I started chemo and radiation simultaneously. The chemo was done through a PICC line, I carried a pump with me at all times and the drug was pumped into me intermittently. I had no side effects from either. I could have worked all through this process, but my employer forced me to take time off. Chemo and radiation were completed by the beginning of September. One month later in early October 1995 I had my surgery. The doctor said that it felt like there were angels in the room working with him. In the end.. they took out my rectum (pardon the pun) and used a section of my colon to create what is called a J-Pouch, which was to act like a rectum. But no colostomy. Dr. Engle said the whole operating room cheered when the surgery was complete.
Early January 1996 I began more chemo, this time more aggressive, they wanted to catch any residual cancer cells that may be floating around inside me. This was a rough battle. I was very nauseous. There were days when I just didn't want to get up and go. I would be curled up on the bathroom floor. Lori had to get Dr. Engel on the phone to convince me to go in for treatment. Eventually treatment finished and I began my new life.
I would go for routine colonoscopies every 6 months.. then 1 year.. then 2 years. The J-Pouch never seemed to function like it was supposed to, I always needed to be need a bathroom. I wore pads for protection. But.. I was alive.
A few years later my mom would develop cancer. Not sure on the order.. breast, uterine, colon .. I may be missing one or two.. She would eventually pass away in 202 at the age of 59.
We were asked to participate a genetic study in London. They took a blood sample from me, they were able to get a tissue sample from my mothers tumor. Up until this point my brother, sister, and cousins on my mom's side were all getting routine colonoscopies.. because we knew it was a family cancer.. and we wanted to be pro-active. They took blood samples from my brother, sister, and my aunt (mom's sister) the tests revealed that my brother has the same mismatch-repair gene as I do.. but my Aunt and sister did not.. good news for my cousins.. because my Aunt doesn't carry the gene, they can't have the genetic issue. My brother however, continues with his routine screening. Both my kids would later test positive for the gene and have had regular colonoscopies since they turned 18. They are now both annually as they have reached the age I was when I was diagnosed.
Fast forward to 2017.. I was having a routine colonoscopy. Dr. Engle had moved to Kingston years ago now so I had a new doctor, I'd seen him a few times. Very blunt.. but seemed to know is stuff. He found something.. in the J-Pouch. Took a biopsy and said he didn't suspect anything. Then the news... July 4th, 2017. Colon cancer again.. 22 years after 1st diagnosis. This was not a re-occurrence of the original cancer.. but still related to the genetic issue. This time there was no arguing.. I was going to have an ileostomy .. complete removal of the large colon. At this time I was OK with it. For the last 3 years I had been working as manager for a retail store that sold ostomy supplies (among other things) so I as familiar with the products. I wasn't as scared as I was at the age of 28. No chemo, no radiation.. they were just going to go in there.. cut out the tumor.. and I would be on my way...
or so I thought....
Surgery was August 2017. When they got in there, they discovered that the tumor is fused high on my sacrum, he called in another surgeon, but they both agreed... the tumor could not be removed. Instead of the ileostomy they game me a colostomy (partial removal of the colon). My daughter asked him why they did that.. and isn't there a chance the cancer could come back again" His response (while wearing a gown covered in my blood) "What does it matter" basically saying... I'm not going to make it through this cancer.. doesn't matter of more pops up. The colostomy is deemed more palliative.. and easier to live with, for the short time I have left.
So I was told.. chemo is not an option.. it wasn't going to do what we needed it to do and would only make me sicker for the time I had left. Radiation was not an option.. because I had already had my lifetime fill of that. Nope.. nothing was going to help. My family continued to push him to send me to Medical Oncology and we were continually denied. I looked into things like 3d printing of the sacrum.. this is being done in Japan.. nope.. not done here.. and it's too risky because of the nerves involved. I found something called Cyberknife, which is a more accurate form of radiation and focuses right on the tumor, it's being done in Ottawa and Hamilton.. Nope.. no radiation. I asked about Cannabis oil as I had a friend tell me his sister used it for her inoperable colon cancer .. nope nothing Is proven. Push came to shove .. I asked him how long do I have.. I was told 2-5 years.
Well.. this sucks.. I had two grandchildren I was looking forward to watching grow up.. ages 1 & 2 … so much for that .. or at least I thought...
Not wanting to take no for an answer I asked about a second surgical opinion. I was referred to the Princess Margaret Cancer Hospital in Toronto. After an MRI I was told the same thing.. that the tumor could not be removed. (I actually started the Cannabis oil in September and my tumor continued to grow.. but I stayed on it because I was told it could take some time to work). However I was referred back to Radiation Oncology and Medical Oncology in London.. both doctors were the ones I saw in 1995!. I began talking with the people in Ottawa about Cyberknife and kept the dialogue open with them. When I spoke to the Radiation Oncologist she was pen minded about Cyberknife and urged me to keep the lines of communication open with them and would assist me through the process, but wanted me to speak to medical oncology first.
My meeting with medical oncology would be the moment my life got flip-turned upside down... when I saw him he said "What took you so long to see me" As it turns out there have been great advances in treatments. There is an immunotherpay drug Keytruda that is doing amazing things.. however it's not covered by OHIP for colon cancer.. and would cost me $12,000 per month. He set me up with a patient navigator who would work with my insurance company and various government programs to reduce the cost (turns out.. insurance would not cover any of it) There may be one other option... but my cancer needed to be genetic.. when I reminded him that it IS genetic his face seemed to light up (which is amazing because he is a rather straight faced man) ...
I'd like to say the rest is history... but really... it's future...… this is where my story takes off from here … happy reading...