Trial Terminates

 

August 10, 2021

Many days have passed but only a few significant things have happened.  I feel it best to describe my current physical status as one in danger as over the last period, I have continued to lose weight, energy, appetite, strength and ability to concentrate for any period of time.  So, how did I get here?

At the outset of the Trial, I started losing weight and that continued all the way through the trial. My strength etc. depreciated along with the weight loss.  My Trial Nurse recorded the regular loss but was at a loss about what to do about it.  My Dr was in the same position and the Trial continued.  I was offered Dietician help as it is part of the program.  I continued the Trial as planned and managed to get to my 3^rd cycle when it was time for the CT scan.  That happened July 19^th and went ahead as usual.  On the 20^th I received a call from Dr Jonker, early in the morning, advising me to stop taking the Trial drug.  The results of my CT showed growth in the Cancer and not a diminishment as expected.  DR Jonker thought through a couple of options for me – the options are becoming slim – and he settled on starting a Chemo Trial called Longsurf.  That would entail a home program for Chemo where I would take a pill in the morning and again in the evening for 5 days in a row, then two days off, followed by 5 days on the drug and the 14 days off the drug.

The list of side effects was familiar and the same effects that I was currently experiencing without any treatment.  That worried me.  I signed up and received my first box of pills to start the Longsurf Program. Interestingly, all arrangements and sign-up etc. was done without any real human contact.  I did receive a couple of calls but mostly this was done through email.  There was no agreement to sign even though it is a Trial.  On the start date I held back and notified my Dr as I was not convinced it would be beneficial to load up on drugs that would make me sicker than I already felt.  In that two-week period, I never stopped feeling badly and weak all around. My body has shrunk, and the muscles have disappeared into sagging skin.  I have been feeling worse as the days progressed.  I asked for some assistance from the Dietician and was triaged quickly and now I sit on a queue of 85 people with an opportunity date of a couple of weeks away.  I am depressed and feeling lost as to what the next steps will be.  I have a meeting scheduled with Dr Jonker on the 23^rd Sept but that seems like a long way off.

Today, at my daughter’s behest, I am meeting a Dr from the Centre for Health Innovation (CHI) to discuss my conundrum.  They are focused on the naturopath approach and may have some aides, approaches that might help me.  I have asked Tara-Lee to be on the call and to be on my medical support team as I need help.  I look forward to seeing how they might be able to help me.

Intervention with CHI

September 15, 2021

My initial visit with CHI was on August 9^th when I met Dr Flower, a Naturopath, who listened to my issues and need for some help to get some meat on my bones.  She then had a series of recommendation to change my diet a bit but mostly to add supplements to my daily routine.  It started with a healthy smoothie but adding some things I had never used in my diet and even some things I had never heard of.  Tara-Lee was a great help in this area.  So off I went to purchase, gather and find a list of pills, powders and oils.  So I started these various things in hope that they would increase my energy, get some exercise, increase my appetite and help me sleep.  Dr Flower is a kind lady and she gave me hope.

She also recommended that I speak to one of her Nurse Practitioner to talk about some Med Cannabis to help with sleep.  I met with her, and she explained the complex process of registering with a provider, being accepted, having blood tests and then having access to their products.  Jamie gave me some suggestions and finally I was able to order product.  It has arrived and I have tried it out on a few nights and saw some sleep gain.  After a few nights of adjusting the dose I got a very sore throat which I attributed to raw cannabis burning my throat.  I throttled back and used other meds for sleep.  The throat repaired itself after about 4 days.  Now I take the cannabis with a little water with no side effects.  However, I am unsure I am at my optimal dose as last night was not a good one at all.  Work in progress.

Dr Flower also recommended Acupuncture to deal with my stomach pressure, appetite, swelling in my legs, digestion etc.  Now this is a stretch for me but I was desperate for some relief and I forced myself to put aside my impression of acupuncture and give it a try.  Dr Giao was very kind, precise and listened well.  I have had several sessions now with some modicum of success although short lived.  He also got me onto a concoction of herbs and spices that tastes foul but is supposed to ease my digestive track and increase my appetite.  I am not doing the concoction anymore.

The final thing that Dr Flower recommended was a IV push of vitamins which was one of my targets as I felt that my system needed such a thing.  I have had several session with them on this process and it seems to help short term. 

As you can see from all of this, I have been on the road early mornings for quite a few appointments in Ottawa.  That is tiring and on one occasion I drove in with Freddi as I really wasn’t feeling well, and we wanted to vote in the early poles.  The upshot of all this attention and special treatments is that I am still in the same position as when I started.  I am weak, have no appetite (meaning I eat about a 6^th of what I used to eat), am still uncomfortable with food to the extent that I am sick after eating sometimes, still have not obtained a good sleeping pattern, have increased stomach pressure and pain after I eat.  Sounds like I have gained little ground with all this attention.  This leaves me feeling quite disappointed with the results of all the attention and expense as those expenses seem to be out of pocket.

Here we are, a long, beautiful summer has passed, and I have basically been restricted by my medical condition for the whole time.  Fortunately, I was able to participate in some of the fun activities at the lake with the kids.  Tara-Lee and her family have been here quite a bit through the summer, and we had a 10 day visit from Gray and his family.  I was great to have everyone together for that period. The laughter and significant cook events were fun (although I only tasted some of their creations) and watching the cousins bond again was a delight.  We also had a visit by Lucy’s daughter and her family as they were vacationing in the area.  It was great to see them and to see how the boys have grown.  My sister’s son, Greg has just been cleared with throat Cancer and he drove up with Lucy for a couple of day stay.  All of these family visits were fun and informative, and I appreciated them a bunch.  I participated where I felt I could but I did spend some time in my chair resting.

One additional thing, I started the home chemo treatment on Aug 26^th and it had little impact on how well or badly I was feeling.  I have finished the first go around last week so I expect another shipment from them soon.

Today I went to town for my CT Scan and that went without a hitch.  I am looking for some answers from the Dr about where we really are in this process when I meet him on Monday. Yes, I get to meet him in person!

By the way, I am still waiting to hear from the team at TOH who run the Dietician program.

I will leave you now and thank you for taking the time to read this Blog.  I wish I had more energy to address this more often.  My track record has not been good.  Be well and safe.

TTK Trial – Initial Cycle

 

June 3, 2021

In my last blog I left it at the point where I was awaiting a response to see if I would be accepted into this drug trial.  On May 26^th I received confirmation of my participation.  That meant that I would start the trial on May 27^th with a 12 hour stay in the hospital in the Cancer Trial area of the Chemotherapy Unit at the Ottawa Hospital – General Campus. The long stay was intended to monitor the drug absorption into my system and to monitor my vitals and blood reaction to the drug over time.  After the initial day I was monitored frequently with the same procedures and saw my Dr. more often than before.  This will continue for 28 days and then there will be another 12-hour day of monitoring at the end of the cycle. 

On my first day I settled into a chair around 8 AM in the Pharmacology Pod at the General Hospital for my long stay.  The first hour or so was a busy time as blood was drawn, BP was taken, ECG was done, and vitals recorded.  After all of that I was given my 28 days of pills for the trial.  Each day I take 4 pills at the same time of day.  I must fast for 2 hours before and 1 hour after taking the pills.  During this first day they drew blood 8 times for measurement and baseline establishment.  They took my vitals at various intervals during the day.  I managed to amuse myself at the beginning watching and soaking up the process.  After all of that I resorted to reading, sleeping, doing some email, watching Netflix, and generally pissing away time.  As the day passed, the patients left the building and a small crew of nurses stayed behind to finish their shifts at 8 PM.  Unfortunately, I had brought along the wrong earphones so I could not watch movies until most of the patients left.  I was also responsible for feeding myself during the day, so I had a small, packed lunch and some nibbles for the rest of the day.   During this day I was also monitored for side effects and happily I was able to indicate that I was experiencing none of the typical side effects.

My first return visit to the hospital was 8 AM the following morning.  I did blood samples and visited with Lena to go through several questions about how I was feeling etc.  Only then was I allowed to take my second dose of pills.  Once that was complete, I was on my way for a couple of days to work through the trial process.

June 19, 2021

Three weeks has passed and now I can outline some of the changes that have happened since the start of the Trial.  As I review my Drug Diary listing (who knew I would have a drug diary in my life) I see the full gamut of symptoms from this drug.  But I have not told you what this drug is so I will start at the beginning.  The drug is called CFI-402257 and it is designed as an oral drug that blocks TTK protein kinase activity. 

“TTK is a protein that is important in regulating cell growth, and cell death, and in ensuring proper cell division.  Many tumours are shown to make too much TTK.  When there is too much TTK produced, it is believed to contribute to uncontrolled cancer cell growth and cell division leading to additional mutations in cancer cells.  Therefore, it is believed that blocking this protein from working will lead to cancer cell death, stopping tumours from growing or shrinking them” – note quote is an excerpt from my 16 page consent form to join the Trial.

Obviously, with such a drug being infused into your system, there will be some effects that the body will demonstrate that are referred to as side effects.  These side effects are list in a long list but the key ones that have affected me over the period have been Nausea, Diarrhea, low WBC, fatigue or malaise, and reduced appetite.   I have experienced all of these except for low WBC.  My platelets are remaining high during the many blood tests that I have had.  In the first week of the trial, I lost 10 lbs in weight and felt weakened by that change.  My appetite has been low, and my eating habits have changed to that of a small bird.  I am still struggling to gain back any of my lost weight.  I have had some terrible nights due to a trial with a sleep aid while going through these other changes. I have spoken with the DR about these effects and we agreed that I best abandon the sleep aid for the time being.  He will prescribe a new choice sometime in the future. Otherwise, I have managed the nausea with meds, but I am trying to get along now without those extra drugs.  I limited the use of nausea meds to early in the day.  I have had one or two really good days when I felt almost normal.  Unfortunately, my usual state is one of low energy, listlessness, and general fatigue.

That, in a nutshell, is how the trial is affecting me these days.  I find some peaceful times with naps and sleep in front of PGA Golf and treasure those moments.  The real effects, those that hinder the cancer growth, will not be known until my third cycle of the trial when I have a CT Scan and compare it to my CT from just prior to the start of the trial.  This upcoming week id the end of my first cycle and I will spend Wednesday (June 23, 2021) at the hospital for another 12-hour marathon of testing after I take the drug in the morning.  This time I will have the right earphones so I can watch movies at my leisure without disturbing other patients.  The next day I start cycle 2 without a 12 hours stay in the hospital.

In all of this I have still managed to uphold my end of the boat business with Bruce.  We have delivered most of our boats to our clients, dealt with some interventions and miscellaneous requests on top of the regular spring business. It went pretty smoothly all things considered.

Me, watching Longmire episodes!

In other news, Freddi is now fully vaccinated as she managed to get an appointment in Alexandrea this last week.  She has had a couple of days where she felt like she was hit by a truck, but she is coming out of that very well.  We are now able to travel and are planning a trip to visit our son and his family in Pemberton BC in a few weeks.  We have not seen them since January 2020.

Today is a sunny Saturday with a coolish wind and we are all together here at Lake Bernard.  What else could we ask for as we enjoy the location, weather and company.  Thank you for dropping in and I will update this Blog as I settle into my second cycle when I hope to find a new point of balance for third old body.

Be well and stay safe ……

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 …..

 

 

Round 5 Sessions 12 through 14

 
Today (Jan 22) is yet another dull day on Lake Bernard.  We have been without sun for quite some time.  The weather is an important subject around the house as we are trying to maintain a skating rink on the lake.  The weather affects this project in many ways.  Unlike a rink in the city or simply on dry land, Lake skating rinks come with several different challenges.  Sometimes, when the weather is too warm, the ice sinks and water pushes onto the ice surface from below.  That causes uneven patches as they freeze and sometimes leaves areas with crackle snow that is almost ice but is simply hard snow. When we have a good solid freeze, the ice seems to remain stable and we can maintain clear patches that allow us to see the bottom of the lake.  That clear ice is great to skate on.  However, there is a nemesis out there called snow.  Aside from the obvious work required to remove the snow, it also adds weight to the ice and causes it to sink more.  Therefore, bringing water back to the surface.  That is a challenge when trying to maintain a flat level surface on the rink.  All this to say that I have a project that I have been attending to since Christmas.  We were so fortunate this year to have a good freeze with clear ice (no snow) shortly before the Christmas period.  Several families around the lake set up different sizes of rinks close to their cottage and in some cases, they maintained paths to connect rinks to allow for some social distancing on skates while visiting our neighbours.  It was a fun time as the kids had access to large areas for skating.  From there I decided I would try to maintain the rink so the kids could have access when they were here.

I mentioned Christmas and I am happy to report that we were able to have Christmas here at the lake with Tara-Lee, Brehn, Kaia and Logan.  Unfortunately, we were unable to connect with Gray, Bree and Skylar in person due to COVID restrictions and supporting non-travel advisories during the COVID period.  This was particularly hard as Bree lost her Father (Larry) to a heart attach while he was riding his bike just before the Christmas period.  He was awfully close to his two children and a great husband to Bree’s Mum (Mary).  This was a shock to all of us and we were feeling extremely disappointed that we could not visit and support Bree during this difficult adjustment.  We maintained connectivity through the phone and Face Time but that is not what is needed at a time like that.  We wanted to help but we were unable to provide the support that is needed when one loses a vibrant individual and a loving parent. 

Our Christmas here at the lake was a rowdy one as Kaia was above excited about all of Christmas and Logan had learned to communicate by screaming at us and banging tin dishes together to amuse himself.  But we settled into our routine and we had a nice several days visit through Christmas.  I must say for all the promises to restrict spending and purchases for others our Christmas tree was no less laden than previous years.  The gifts were all thoughtful and had a story behind each one, so the day was spent opening gifts over a long period of time.  We had breakfast at 1 PM and dinner at 8 PM.   It was a fun day and most of it was inside.  On the other days of the visit the kids spent a good deal of time outdoors.  Particularly after Christmas as there was skating, cross-country skiing, some sliding and even some attempts at wee ones on downhill slopes.  Great fun for all.

Other than that, my life has been routine as I have mentioned in past entries.  It seems the only changes are in my health and employment status.  As of January 19^th, I am officially and ex-WestJetter.  As of that date all the Airport WestJet staff were permanently laid off and WestJet started operations with outsourced resources.  It was a sad day for many of us who loved and respected our jobs and guests on the airline.  Many of my colleagues had worked for many years whereas I was only employed by WestJet for 3+ years.  WestJet made a reasonable offer to all departing employees and payout was set for the 19^th.  Most of our team have found new and interesting employment in other businesses and the long wind down is now complete.  I will miss my WestJet people as with time communications and desire to get together will likely wane as people work with new and interesting folks.  I do hope that once this Pandemic thing is out of the way we will be permitted to have a gathering of the WestJet Airport staff in some place that sells good food and alcohol.  It will be a party for sure.  I am currently unemployed and not too interested in starting something new unless it is attractive and allows me to interact with good folks like my WestJetters and our guests.

The other thing that has changed is my health.  Of late, I have been feeling a little off and experiencing significant indigestion when I enjoy meals or rich food.  I have managed to maintain a balance by using over the counter drugs like Tums.  Nighttime has been a challenge as my neuropathy and a pesky hip combination tends to keep me awake and uncomfortable.  This is affecting my sleep and the result is that I am a bit cranky during the day.  I mentioned this to my Dr on Jan 13^th and was told that I should try Zantac as it was stronger than Tums but not a prescribed drug.  However, the Dr had news for me as my CT Scan (Jan 6) had a comment from the Radiologist that was not routine.  It went like this: “There is however suggestion of newly developed peritoneal carcinomatosis with multiple ill-defined soft tissue densities noted within the mesenteric fat.” 

Ok so I did not know I had “mesenteric fat” and that set me off.  I try to maintain my weight, but I guess even good beef has its share of fat.  I was pleased that the densities were ill-defined, and I asked the Dr what that meant.  I was told that it meant it was not defined as a cancer spot at this time.  It requires some monitoring, and my next CT (in about 6 weeks) should shed some light on what these are and what, if anything, we should do about them.  We agreed that the right course of action was to maintain the status quo in terms of treatment as we disqualified three other options that were offered. They were to increase frequency of my treatments, change the cocktail to a drug that had given me neuropathy in the past and move to a daily pill for Chemo which would change my side effects in a negative fashion. This all came as a heads-up as we know that things will deteriorate as my treatment prognosis is “maintenance” and not “elimination” of the active cancerous cells.  In the interim, I will bide my time and wait to see what happens with the next CT.  I am OK with that and will carry on as normal as possible.

Finally, today (Jan 24) is a gorgeous sunny and cold day and I will try to do some repair to our rink as there is no snow in the forecast for several days. 

I am frustrated as we had to cancel our planned visit to Kauai in February due to COVID existence and the associated difficulties imposed by the travel restrictions of both Kauai and Canada.  I know I am not alone with my frustration and I am starting to lose hope that a visit to warmer climate is in our future this year.  Marriott, unfortunately, has moved my planned two weeks to Interval International where I am able to access any of their 15K properties over the next two years.  I guess that is a safe place for the weeks to be when we have so many uncertainties about when travel will become accessible for people of all nations.  So far, we have lost 3 weeks’ vacation due to expiry and our inability to travel during this period.  Those three weeks are gone forever.  I am happy that we did not lose our two weeks with Marriott as we plan on using them as soon as we feel confident that travel is OK.

I will take my leave today and send along best wishes for each one of you to make 2021 a great year.

Thank you for dropping in and please feel free to contact me should you have any questions or thoughts about this content.   Be well and stay safe ……..

Round 5 Sessions 7 through 11

 I seem to have lost my way.  This is probably most apparent by the fact that I have not addressed this blog since Aug 2.   That is 15 weeks and not an entry into this blog.  I am trying to understand why that would be as this blog provides me with a platform to stay current, organize my thinking, vet some thoughts, report to interested folks about my medical situation, speak of the good things that have happened and to bitch about some of the craziness in the world, North America, America, Canada, Ontario and of course Ottawa.  Most of those subjects reflect differing political beliefs and understanding and these allow me to comment or not on the news of the world.  Yet I have gone 15 weeks without a drop of input.  I must say there were several times I noted to myself that I should update the blog but that never happened.  I need to understand my reticence to address the blog.

During this period, I have noticed a distinct decline in my attitude, interests, and energy.  I wake each day and start my day with the usual routine getting ready to face the day by taking a hot shower, shaving (from time to time), taking my assorted handful of drugs that hopefully keep me in balance for the day, dress, grab my book and head downstairs.  That routine has not been interrupted or changed at all.  My next steps involve clearing any kitchen items that are not put away, emptying the dish washer, walking the dog, and preparing a hot chocolate to accompany my short time to read in the morning.  So far so good, but this is where my day starts to blur into a mass of short term “ToDos” and spending time on social media to try to keep in touch with people I am no longer allowed to see, hug, smile and chat with.  Although there are important and fun projects sitting there waiting to be started and completed, I am not interested in addressing them.  This is a change in me.  I normally have purpose and tend to address the important projects first and then address the fun one.  At this moment, although there are “important” things to do I am just not interested and therefore these projects get put on the back burner until they become critical.  For example, each fall season gives us several winterizing tasks that must get done.  Disconnect the water in areas of the cottage that are not used in winter, disengage the sewage system from the lower cottage, move furniture to covered areas for the winter, put away the kayaks and paddle boards, winterize the pontoon boat and store it, winterize and store the tin boat, pull the docks and set them up for winter freeze up, rake tons of leaves, clean flower beds, arrange for firewood for the winter, service the snow blower for its duty during the winter, arrange for snow tires for the cars and the list goes on.  As of today, most of those things have been done and normally I can attest to their completion as I participated in most of those tasks.  Not so this year.  Freddi and the kids have done many of those tasks quietly and efficiently.  I did some of the tasks but lacked my usual verve and enjoyment of getting these things done.  The docks are still in place and we have had our first snow.  There is no ice in the lake yet so there still is time to get that task completed.  I can no longer blame my work schedule for not getting to these tasks as I have been on Voluntary Layoff with WestJet since March.  My participation in our boat business was not affected as I am aware of the time constraints to get this complete and I managed to get out there and get the job done with Bruce.  Our consulting business also requires time and I have managed to stay on top of the activities required to keep the business moving.  But my personal life activities have taken the hit at this time.  I am trying to understand what is going on and my conclusion is that a big part of my life has been the energy, excitement and rewards of interacting with people in business, personal interactions, friendly exchanges and just plain sharing and caring about my friends, colleagues and associates.  That part of my life has been missing since our initial lockdown around COVID.  I know I am not alone but the gas for my spirit has been cut off.  Knowing this is certainly the first step to fixing the problem but I still lack the energy to be positive and directed as I was some 8 months ago.  So, the summary is that I am not doing well coping with the loss of my wonderfully full network of good people and I have not found a solution to the problem at hand.  I certainly think about it often and deeply but to no resolve at this point.   This is a work in progress but you may read some thoughts that are not as positive as I have been or not as sensitive as they once were as I am in “that” place and I know I must get out of there.

Now that I have that off my chest, I can focus on some of the things that might be of interest to you.  I appreciate the fact that you take the time to read some of this blog and therefore I feel obliged to give you some news, thoughts and perhaps inspiration.

As noted above, I have had several Chemo sessions since I last wrote here.  Session 6 went ahead on August 2 as planned right after my last blog entry.  The most significant thing about that session was saying goodbye to one of my Cancer Treatment Centre nurses as she set out on an adventure in Italy for 2 years.  Her husband is in the military and he was posted for early spring in Naples Italy.  Due to COVID their departure was delayed from April to August.  They did get cleared to leave and the last time I saw her was during session 6.  We have worked together several time over the years and I will miss her energy, caring spirit, and efficiency in her work.  Otherwise the session went as planned.  Each session comes with one week of inconsistent physical and mental wellbeing.  The chemo brings along some side effects that are undesirable and quite depressing as one takes several days to ride out the effects.  Fatigue, sleeplessness, cramps, diarrhea, constipation, lack of appetite or interest in food, head aches and bouts of discomfort due to my neuropathy from previous Chemo sessions.  These taper away on the second week and the third week is my period of feeling my best during the 3-week cycle.  None of this is new to those who have read my blog entries of the past.  I reiterate them only to update you of how my sessions play out.  Sessions 7 through 11 fell into the 3-week cycle and took place on Aug 25, Sept 15, Oct 6, Oct 27 and most recently Nov 17.  Each one of the sessions enjoyed its own activities at the Cancer Centre, disruptions causing physical reactions and eventually ended with a week where I was feeling strong and not impacted by the Chemotherapy.  I did have a telephone meeting with Dr Jonker to catch up with my results of my CT Scan of Sept 30^th.  That scan produced no new information as the results showed no growth of the lesions and no movement to other organs.  In other words – status quo.

Also, during this period, we helped a number of cottagers by taking their boats, winterizing them, shrink wrapping and storing of their boats for the winter.  Bruce and I worked hard for 6 weeks from mid Sept through Oct.  By Nov 1 we were finished with the boats and we completed some planning and organizing for the spring.  The fall season went as planned in this area.  We completed 32 boats as we brought on some new clients for this season.

Other than that activity, we were mostly in isolation at Lake Bernard.  Our routines were pretty simple as we could not really visit with friends and visiting cottagers due to COVID. However, we spent most of the summer in the company of Tara-Lee and Brehn and their kids.  They were in our bubble from the beginning and we were careful when Brehn had to go to work.  That summer was a fun time as we had many outdoor activities and the kids played like kids do.  The only issue was explaining social distancing to kids over and over as they were seeking friendship and companionship with their friends.  It was sometimes difficult and certainly weird for the little ones to understand the whole situation.

Freddi was approached by an organization to help by liaising with their Marketing and Sales groups and linking in with their clients.  Nautical  Lands Group hold a number of properties that are developed for apartment living of +55 folks in building clusters that have a number of common support facilities (gym, bar, restaurant, hair salon, etc) and they are currently located around south and central Ontario.  This is a full-time commitment in an office, and she is enjoying the challenge of learning new business objectives, non-retail work, new software tools, and learning about the wants and needs of +55 cohort.   Her retirement lasted a good 7 months but she seems to be much happier doing constructive work.   I understand that.

Now I am going to take my leave as I have much to think about.  I also have meal planning and the usual cooking chores that come up every day.  Some days I am inspired and try new things but on others I fall into the usual rut and produce edible but less interesting dinners.

Thank you for dropping in and please eel free to contact me should you have any questions or thoughts about this content.

Be well and stay safe ……..

Heading into Round 5 Session 6

Today is a rainy Sunday at Lake Bernard.  A good number of the cottagers are taking refuge in their cottages after a remarkably busy and sunny Saturday.  It is the busiest weekend we have seen on the lake this year.  Cottages have been the go-to place for people who were caught at home for the duration of the COVID period.  It is good to see people on the lake and maintaining social distancing practices.

My last update started when I was in my treatment on July 14^th.  The finished update di omit any content on my CT Scan results and other developments on this journey.  I decided a rainy Sunday was a good time to update this blog with that information.

My appointment with Dr Jonker was scheduled for Wed July 15^th at 9:30. The practice today is to meet your DR through a phone conversation for such things as test results.  Dr Jonker was replaced by Dr Moira Rushton to report on my test results.  In summary my CT showed that my Cancer is stable with some shrinkage on my cysts on my liver and stable in my lungs.  No remarkable progress happening in there at all.  She told me she suggests that I continue for the next three months on the same treatment schedule and content and there would be another CT in 3 months My Chart at the TOH now shows my appointments through to October.  During the call I asked about the Trial that Dr Auer was starting with an objective of discovering the success rate of a new drug that will assist Cancer patients with their immune system.  It notes that this will assist Cancer patients ensure they are “ready” for their next treatment and perhaps protect them from such viruses as COVID-19 or whatever the next big thing will be.  Dr Rushkin ensured that my file would reflect my interest and she would do some digging to better acquaint herself with this Trial.  I suggested that I would get in touch with Dr Auer and she agreed that I should do that.

I contacted Dr Auer’s office to inquire about the Trial.  Nancy, her scheduling assistant, was happy to hear from me and asked for some time to see if Dr Auer would like to meet with me on this subject.  The following day Nancy contacted me to tell me that they were looking at a month-end date for a phone discussion with Dr Auer.  Last Friday I received a call from Dr Auer.  We chatted about life in general and it was a conversation that linked back to our time when I was in more frequent contact with her.  She is still my Oncologist of Record but I do not see or chat with often.  She talked about the Trial and the fact that Investigators were Drs from different areas in Canada.  The first Investigator happens to be Dr Jonker and she noted that my file had been updated showing my interest.  It also indicated that I was a good candidate for this Trial as I have missed some treatments due to my WBC count being too low, I was over 55, and I have stage 4 Cancer.  The Trial will be starting in September and she expected that I would be contacted to participate.  Being a participant means that I would have to have a series of blood tests before and after injections on Day 1, day 14 and day 45.  On those days I would be injected and monitored with either the drug or a placebo as they need a control group for the Trial.  Dr Auer was pleased that I was interested, and I enjoyed catching up on her family and her practice.  It was a great call as it was like talking to an old friend.

In other news, I was requested to re-join WestJet after a period of voluntary leave of absence.  They asked if I would be interested in being part of a contingency re-call as they were aware of some resignations at the end of July.  The process they follow is to go to the seniority list and ask the most senior people on the list if they would like to be re-called for work.  Employees have the right to decline and they would remain on the seniority list for future re-calls.  If they do not get the required numbers from the most senior people then they go further down the list until they are successful in obtaining enough people to meet the next month’s requirements based on the released monthly flight schedule.  I spoke with Katy, the Station Manager for YOW, and she outlined that shifts would probably be for 3 hrs a day for 5 days a week totaling 15 hours a week.  I was prepared to accept the re-call but that got vetoed by my family members who, quite rightly, pointed to my immune deficiency.  Although I feel confident that airports are close to hospitals when it comes to rigour and safety precautions there is a likelihood that a passenger may well be a carrier unknowingly.  In the end I declined the re-call and will wait for future recalls and measure my degree of interest at that time.

Tuesday (Aug 4) I will be at the Queensway Carleton Hospital at 8 am.  At that time, I will commence my 3-hour treatment unless my blood tests show my WBC count is too low.  I did my blood on Friday as the blood clinic will be closed on Monday.  So next week is treatment week and things should be quiet for that period.

Other than that I have been on my motorcycle for my first ride of the summer, I managed to get some work done on my long living bathroom project and I managed to get some stain on my barbeque shed.  Not huge achievements but big enough to feel good about heading back to normal when I used to be on my projects daily.  My mental state is stabilizing and perhaps seeking a way back to a more normal life.  I find myself somewhat depressed about where we are in the Cancer process, the WestJet issues of employment as well as where we are heading for future lifestyle changes due to COVID-19.  I have stopped watching the news as I am annoyed at the media and mankind for the actions that are happening around our post-COVID recovery.

On a fun side of things, here is a photo taken by my cousin at the family cottage on the St Lawrence River.  It was taken about 40 years ago.  I am with our son Gray and my nephew Matthew.  When Freddi showed the picture to Kaia she pointed to me and said that it was a picture of Gray.  Genes are a funny thing as Gray does look like I did when I was younger.  

Thank you for dropping in and reading this blog update and should you have questions please drop me a line.  Please be well and safe and focus on the important things in your life.

Round 5 Sessions 4 and 5

Today (July 14) I am at the QCH for session 5 of my Chemo treatments.  I have just started, and it seems like it will be routine with a short Avastin drip followed by an hour and a half of the Irinotecan drip.  This exercise includes other meds such as steroids to encourage the drugs,  atropine for cramping and internal support, and Ondasatron and Emend to help with nausea.  It is a bevvy of drugs which leave me feeling punk, tired and a bit on edge.  I usually leave the hospital after 11 am and I head home to rest.  This is a process that takes about 3 hours all together.  So that is what I am doing with my day today.  The 4th session was executed on June 23rd and I did not really have any significant impacts from that session.  

The last month has slipped by with little recognition of day to day differences.  I seem to easily lose track of time, days and calendar dates.  We have been busy with our own projects, visits with TL and family, some trips to the city for food, beverages, DR appts and Freddi managed a hair appointment to do something with her Covid hair.  I did manage to spend some time on the bathroom in the middle building of our cottage and I am encouraged to finish it soon.  I have several people rooting for me so that bathroom can be considered finished and fully operational.  This project has been dragging on for several years and I am ashamed of how long it has taken.  My lethargy of the past few months has not helped this cause at all.

On a more positive note, Kaia has been using this summer to perfect her swimming skills and filling the hot summer days with hours in the water.  She is a bit of a fish and is learning very quickly as she swims regularly with her Father and Mother. Brehn was a competitive swimmer in his youth so he is a great example for Kaia.  Little Logan is also proving that he likes the water and spends some quality time with his folks in the water.

A few days have crept by (July 16) and I have just returned from having by bottle removed.  That signals a last step in the Chemo process.  Now I need to drink water and rest and get the bad chemicals out of my body.  It is nice to return to the clinic for the bottle removal as during the pandemic I was forced to use the external nursing service of CCAC.  That meant that I had to be a home in Ottawa for those appointments.  Personally, I like going to the clinic as it leaves the busy road warrior nurses available for folks who need homecare much more than I do.  They are so helpful and well equipped for any issue of health that needs extra assistance.  They are front line workers for sure.

My trip to the city today only required one stop so I returned to the cottage early enough to have a light breakfast before I took some time to rest.  My sleeping habits when on Chemo are not particularly good so I end up being lethargic and uninspired for a few days after removal.  Tomorrow I start my 5-day needle process to encourage development of my WBC.  This time around my WBC count was fairly good.  I am looking into Dr. Auer’s research on improving compromised immune systems for Cancer patients.  The immediate intent is to have a research trial to see if this can be used to improve the immune system, with drugs, quickly enough to be used to protect patients from COVID-19.  I am going to see if I might be a candidate for such a trial. 

Today is cloudy rainy type day and I must admit I am not used to that as we have had some beautiful, although quite hot, weather here at the lake this summer.  That helped us to get all our client’s boats out to their rightful owners as requested and we are finished for the season.  We need to re-assess our business arrangements with our clients, but we expect to continue with this service next fall.  It is a fun venture and I do believe it helps people on the lake.

Not much else that is newsworthy as we seem to be trekking along from one Ground Hog day to the next.  I am looking favourably at our Phase 3 opening in Ontario.  This allows folks to gather up to a group of ten and allows restaurants and businesses to open with strict guidelines for social distancing and sanitary operations.  People need social interaction, so this starts the process.  We will soon learn if Ontario folks can do this safely.  Obviously, some areas of North America have failed miserably when they lifted such barriers.

Thank you for dropping in and if you have any comments or questions feel free to drop me an email and I will try to respond directly.

Be well and safe ……