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.