Round 5 Sessions 15 through 18 - an update

 I have resurfaced from my period of hiding from everyone and everything during the COVID lockdowns and restrictions.  In the last few months, we have done extraordinarily little other than make it to the next day or so it seems.  Freddi and I have been isolating here at Lake Bernard which makes for comfortable surroundings.  We have only ventured out to attend Dr appts., get vaccinated and to do necessary groceries or supplies at the drug store or the local hardware outlet.  We have had some visits with Tara-Lee and family but even those visits have been encroached on by the most recent lockdowns and restrictions in Ontario and Quebec.  This isolation is hard on people as we are social animals who live and learn with and through others and that privilege has been denied with the COVID restrictions.  I recognize the need and benefit of such restrictions but still feel the pressure of just two people coexisting without interactions with others.  I miss my friends and family.  I look forward, optimistically, to the removal of restrictions and the return or the establishment of a more stable and open norm for Canadians.   I hope that the summer will be the time of that transition.

Freddi is working from home and we are thankful for our transition to a more stable and consistent Internet service out here in the country.  Her work is interesting and moving quickly so she is learning new skills and sharpening old ones as she liaises with the company’s clients.  Our dining space is now her office, and she has a nice view of the lake as she talks on the phone or attends zoom calls.

I have been neglecting my desire to write on this blog as things were just basically the “same shit, different day”.  My 3-week treatment plans were just rolling along with few changes or thought.  My health after the Chemo treatments usually took about a week to improve.  That allowed me the better part of 2 weeks to recover fully before the next treatment.  And, as usual, my CT scans were scheduled on a 3-month cycle. Sessions 15 through 18 were all at status quo and unremarkable.  The combination of unremarkable health conditions and the malaise brought on by COVID lockdowns left be devoid of energy to address this blog.  Unfortunately, that could be said about anything which looked like a “task” and extraordinarily little was accomplished.  We had some nice weather in March and early April, so I managed to get some outdoor work accomplished.

However, recently my health has taken a right turn and I am finding myself on a new route to wherever I am going.  I had a CT scan on April 8^th for a review with my Dr on April 19^th.  At that phone meeting the Dr informed me that despite the treatments my “masses” have grown in both my liver and my lungs.  That lead to the statement I have been expecting from the Dr.  “This treatment is no longer working” was his direct comment to me.  We then discussed the next step options for me.  He laid out three simple options which included a different chemo mixture, a daily pill treatment and perhaps looking at a trial using immunotherapy.  I quickly migrated to the third option as I have been thinking about that option for a while.  We agreed that the Dr would seek out an opportunity in an immunotherapy trial and we would chat again in 2 weeks.

I received an appointment request for May 4 to further discuss the next steps.  Dr Jonker went through the options once again and advised me that getting a spot on one of the immunotherapy trials was not likely going to happen.  There are too few open spots on those trials and far too many people waiting for a spot.  He had another option which he laid out for me.  Apparently, there was a spot available on a “drug” trial.  The trial was in phase one, but it had already had some results and fairly good results to date.  This University Hospital Network (UHN) trial is focused on TTK and is administered through a pill dosage every day for 28 days in a cycle.  The drug messes with the protein levels and that is a disrupter in the development of Cancer cells.  It is intended to reduce the size of masses.  Being a trial there is lots of monitoring and attention by Dr Jonker to ensure that I (as a patient) am doing well or OK for now throughout the trial.  Dr Jonker introduced me to Lena who is the Clinical Research Nurse for the trial at TOH.  She spent a good deal of time giving me background info and describing what might happen should I join the trial.  She handed me a 16-page Study Information and Consent Form to take home to read and understand.  If I was acceptant of the trial and the associated risks and benefits, then all I needed to do was sign and she could go ahead with an assessment of my health.  As one would expect there are criteria to meet before acceptance on the trial by UHN.  After talking it through with family I signed the consent form and asked to move to the next steps.  That meant a few hours of testing and assessing which was done on May 6.  I now have a CT scheduled – to establish a baseline for the observed masses – for May 14^th and a potential start date for May 26^th.  The beginning of the trial requires me to be at the hospital for a full 12 hours as they administer the first dose as they want to measure the rate of absorption into my system hourly and maintain a vigilant observation of my vitals.  The commencement will only happen once the UHN accepts me as a participant.

How do I feel about this stage in my challenge of dealing with Cancer?  That is a good but hard question to answer.  I am feeling a little bit of remorse as I recognize that where I am in my Cancer is well advanced and my options are not quite as wide as I had grown to believe.  It was, and still is, a funny feeling of fragility and hearing a door close somewhere.  It was a recognition that my advanced Cancer had made ground even though we were peppering it with poison for the last couple of years.  I also recognize that I have lived beyond the estimated expiry date allowing me more time with my family and friends.  Thinking of one’s own mortality is quite sobering.  But this new steps or stage in my story has forced me to do that.  Putting that aside, I find myself interested and hopeful that the drug will be able to reduce my masses over time.  It seems to be focused on breast Cancer and colorectal Cancer patients at this time.

Interesting fact:  no matter where the Cancer is in your body organs of bones etc., the markers for the Cancer never vary from its origin.  For example, my Cancer started in my colon and is now located only in my liver, lungs and some in the peritoneal lining of my abdominal area – my colon was cleared out back in August 2015.  However, my Cancer is still recognized and treated as a colorectal Cancer.  I did not know this before a discussion with Lena.

The next step for me is be accepted and start a regime of a pill a day with close monitoring for the first cycle and decreased hospital visits as I progress through the cycles.  The reported side effects of this drug have been GI toxicity, causing diarrhea and low blood counts, suppressing immunity.  Being no stranger to these effects I feel that I am equipped to deal with them.  These still leave me a little anxious as I do not know this devil.  However, I will try to make this work and be hopeful that the results will be positive and show some negative growth of the Cancer masses.

That is where things stand, and the next few weeks will be interesting to say the least.  In the interim I will continue to do my outside work, work with my Lightning Tree consultants, and deliver boats to residents of Lake Bernard.  Those activities will keep my mind off this challenge for a while.  I will update this blog shortly as we start participating in the trial.

Thank you for dropping by and I do hope that if you have questions or observations, that you will not hesitate to contact me through my email account.

Stay safe and be well …..