Round 3 Session 4 - completed

Today is Saturday and I am finally crawling out from under a rather hard and not very comfortable week.  This session feels like it has held the most significant set of side effects and I feel that the impact is lingering longer than I recall happening before.  All of this has been disheartening and to say the least very inconvenient. 

Last Monday morning I went to the blood letter early (7:30 am) to have my blood tests processed before I met with Dr. Jonker at 8:30.  They usually process the majority of the tests within an hour, if requested, so I was on target.  I left the blood letter’s office and found a quiet spot for a Timmy’s breakfast sandwich (you would think I would learn about diet but .... ) and enjoyed it before going to register for my Dr. appt.  On the weekend I had experienced severe stomach cramps throughout the day and I finally narrowed it down to just eating too much in anticipation of the upcoming week when I would have a reduced appetite.  Regardless I ate the Timmy’s breakfast sandwich.

My Dr. Jonker was out sick so I had another of his team talk to me about my last round and to discuss what is coming down the road.  I was intent on making sure he understood that we were going to be on vacation and no scheduled appts of activities were to fall into that time capsule.  He started by analysing the rather mundane side effects from session 3.  They were simply nausea, headache, constipation, diarrhea, general malaise, some anxiety and depression and, of course, the inability to sleep on day one followed by several nights of restless sleeps.  Nothing exceptional to him but he dutifully noted each effect and moved his head in an approving manner.  We then talked about the next session and it took a while before we finalized that for Feb 21 at QCH.  I then asked him if he had the results of the CT scan I had taken the previous week.  Fortunately he had those results and advised me that two different things were noticed with this scan.  First, the liver spots had receded some from the last scan which was a very positive indicator that the current treatment was making a difference.  The second observation was that the lung spots had maintained their size but no new ones were found.  That was an indication that growth has been abated for the time being.  In summary, a good result from a fairly innocuous set of Chemo sessions.  I was happy with this result but I am still hoping for faster reversal of the direction of this cancer.

In the end I was given the go-ahead to take Session 4 on Tuesday morning.  I arrived at my 8:00 am session and started in right away.  The team at the QCH were their usual efficient group and they administered the chemo cocktail with their usual proficiency and provided all clarifications I was seeking.  The session lasted until 11:00 am at which time I set off with my Chemo bottle strapped to my waist to do some small chores in the city. 

I dropped by Tara-Lee and Brehn’s house and enjoyed a nice soup lunch with them.  The visit with smiling Kaia was as uplifting as it could be and it helped me pull up my socks from feeling sorry for myself.  I didn’t stay long as I knew I had some work to do on a proposal for a partner organization in Montreal.  That bit of work took up some of my afternoon and it continued into the evening and the night.  I ended up having a telephone conversation with my business partner at 3:30 am as he was up working and saw that I had sent out some files.  Remember, on night one of any session I do not sleep due to the steroid that is given to me at the start of the session earlier in the day.  So I worked on the proposal.

Wednesday came as part of a long night running into a new day.  I had hoped that I would have a day to just lay low and lick my wounds as I had the taste in my mouth of chemo when one is on the bottle.  I was committed to water consumption and use of ancillary drugs as required as that is the best course of action to minimize side effects.  However, I had a morning appointment with my eye Dr to discuss the results of some baseline testing he has been doing on me over the last two years.  He was his usual cheery self and we chatted about my tests for Glaucoma (pretty standard stuff) and Cataracts.  Freddi had seen him the day before and he had scheduled her for “sizing and fit-up” appointments for cataract surgery in the spring.  Much to my surprise he explained my eyes to me and suggested that I would benefit from cataract surgery in the fall.  Wham – we are replacing the headlights on a very antiquated and sick vehicle!  After some better understanding that this simple operation, although expensive for me, would be a great enhancement that would eliminate some of the problems I am having with my eyes and some aspects that are not problems but would be convenient. (for example: not requiring glasses to see distant things).  I accepted the appointments and left the office a bit surprised in the results.  I picked up some chicken at Swiss Chalet and enjoyed lunch again with Tara-Lee and Brehn.  After a few small chores in the city I returned to Lake Bernard to spend a quiet afternoon.  I managed to read some and to relax before I prepared a proportionately huge dinner for Freddi and myself.  I seem to be losing context of trying to eat less but maintaining the approach of eating fresh and balanced meals.  I was quite tired as I had not slept but sleep did not come easily.  I had been constipated all day and I managed to “break the seal” about mid evening.  You know, sometimes you should just let things alone.  As a result I started a chain of events that had me in reading in the bathroom 5 more times before 1:00 am.  That was not a surprise as diarrhea is a given side effect of the chemicals that I am taking.  Regardless it is not a fun exercise even if it does provide time to continue on the interesting novel I am reading.  In between these bouts I also had time to finish the proposal and submit it to my business partner to conduct the final QA of the documents. 

Thursday is always my favourite day when I am in-session.  That is because my 48 hours of continuous Chemo from the bottle come to an end and I can start to shed the side effects of Chemo.  It always starts with my morning shower that is abbreviated due to the necessity of keeping my “connection” out of the water.  I have developed a routine that allows me to wash myself, as best I can, with a strategically placed towel and the bottle wrapped around my neck.  That way I can both wash and shampoo my hair with little impact on the connection through my port.  It is not attractive, convenient or even something anyone would want to see but I always find it somewhat amusing.  Once ready I drove to the city to meet with the CCAC nurse who removed my connection.  It is a pretty routine appointment and I am out of there with renewed hope that I will once again feel like my old self in about half an hour. 

I dropped into Ikea and a couple of other short stops and waited for word from Ben that the proposal was ready to submit.  Once I received that I stopped running around and completed the submission prior to the deadline.  Since the week had been pretty busy with not much down time I decided to go to Lake Bernard and sit in front of the TV and watch movies.  I was feeling pretty sick and the time resting was very much appreciated.  Note: to self – do that more often!  I prepared dinner for Freddi and me and we crashed early.  Sleep did not come easily.

Friday morning I had some time to myself at the cottage.  It was nice to sit quietly and read and enjoy some easy breakfast.  I managed to self inject my Neuprogen to assist my WBCs in their effort to get back to normal.  That exercise is important as my immune system should be in good shape to travel by airplane in the upcoming week.  At about 10 am I had a visit from an old friend that helped me get through the morning even though I was feeling the pressure of another bout of bathroom visits.  It was a good visit and we caught up on a number of years.  In the early afternoon I went to Ottawa to pick up a repaired ring and I decided to go to the Renovation Show at the EY Centre.  In retrospect I wonder why I am attracted to these shows as they charge a bunch to get in, park and I walk away with little information that will benefit me.  This time I found one gem but the rest of the time was wasted.  I was feeling very sick as I did those activities.  I finally found my way to visit with Tara-Lee as we had arranged to have dinner with them that evening and planned to stay with them overnight attend a family kid birthday party the next day. 

Well today is that next day and I awakened from a fairly good sleep feeling somewhat refreshed but still pretty crappy with lots of nausea and general malaise.  I managed to self inject my Neuprogen just after my morning shower.  I then decided it was probably not a good thing for me to attend a kid’s birthday party feeling how I felt.  I bailed and planned to visit at Luciano’s and pick up some supplies before returning to the Lake.  I had a couple of bouts in the washroom in the early morning.  I did take some Imodium and expected all to be well until at least later today.   Not so ......

About half way to the cottage I started to feel some pressure that only intensified as I drove through the countryside.  (I am taking the time to describe this as it was one of the most horrific experiences for me and I do not want to let this one fritter away like most routine sufferings with this program.)  As the pressure grew I figured we were about 25 km from the cottage.  I estimated that I could make it as I could relax enough to keep things where they should be.  As the pressure grew my toes curled tighter in my boots and my external voice started with soothing words and prayers that gave me encouragement to maintain my dignity and avoid an awful clean-up.  I started to feel flushed and I felt sweat starting on my brow.  That scared me even more as I was still only at Wakefield and about 15 minutes out.  My thoughts went to what I would say to the police when they stopped me for speeding down the highway.  I practiced a speech that took about 20 seconds but I was certain that if I had to stop it would be for naught and experience that humiliation.  As I turned onto the dirt road I noticed that I was almost standing as my legs were straight and cheeks clenched like a bear trap as I navigated the dirt road.  Funny about something like that – the closer you get the more intense the need.  I have noted that several times over the years as I have had to pee while driving to the cottage. I turned into our driveway at breakneck speed and stopped the car in front of the house.  I scrambled and managed to unlock the house, reset the security system, remove my coat and boots and skip around to the bathroom.  By some miracle I was able to get comfortable before I evacuated my entire insides – or so it seemed.  I apologize for the details here but it has been one of the most horrific things I have experienced in many years.  After a period of reading to calm me down I was feeling sufficiently comfortable where I felt I could leave the bathroom.  I did with pleasure and prepared a warm drink and sat down to rest.  I promptly went to sleep.

So that was a few hours ago and I am happy to report that I still feel like shit but far less so than yesterday or even earlier for that matter.  Freddi has called and she is on her way up here and I expect to spend the balance of the day resting and watching old movies with her. 

Note: On January 26^th we are winging our way to Calgary for an overnight before we connect with a flight to Kahalui on Maui the next morning.  We are meeting Mark and Joan in Maui later that same day and we are planning on relaxing on that island for a week.  We will then take an island hop to Kauai to spend a week with them at the Marriott (our home away from home).  It is a time for relaxation, enjoying friends, visiting important sites, beaching, tasting good food and enjoying some good drink including some fruity drinks with umbrellas.  Mark and Joan return to Ottawa on the 10^th of Feb and Freddi and I are staying for another week.  We return on Saturday the 18^th.  I expect to be pretty quiet on this blog during that period.

In the interim, I wish all of you well and I hope that you and yours are making the best of every day.  Life is sometimes tough but it is still worth every day.

Love you and thank you for dropping by............

Round 3 Session 3 – completed

Today is Saturday, Jan 7, 2017, and all is peaceful outside with the sun shining over a cold (-24 C this am) Lake Bernard.  The crispy air and the stillness were disturbed by my early morning drive to Ottawa to consult with a CCAC nurse.  The drive to Ottawa was nothing short of winter magic.  There was a spectacular deep blue sky, the rising sun, the radiant visual effects of iced trees, the moist air with tiny flecks of snow caused by the river fog and a duel rainbow floating in front of my car showing me the pots of gold at the ends of the rainbow as I squinted into the rising sunshine.  All of these elements converged in my view along the highway and reminded me of the early morning drives with the kids to go skiing on a Saturday morning.  It was also one of those mornings that reminded me that my camera (not my phone) should be in the car at all times.   The trip was for a routine appointment but I am getting ahead of myself.

Earlier in the week I went to TOH to do my blood tests at the last possible minute to ensure that my WBC had done their thing and they were of sufficient count to allow me to go ahead with my 3^rd session for this round of Chemo.  After the blood tests I waited for the rest of the day to see if I received a call to cancel my Chemo session.  Unfortunately, as with most things today, only bad news travels fast and patients are left to wait and wait to see how their tests have come out.  Doctors in general work on the basis of: “if nothing is wrong, proceed and if something is wrong we will call you.”  The difficulty is that the patient is left wondering until such time as the patient losses interest which could be days later.  All that time the Dr. may be confident that all is well while the patient is still worried.  In my case the Dr. gets the results and decides if it is OK or not to proceed and goes about his business taking care of other patients.  However, I was left to think about it all day until I was sure that their office was closed and only then was I confident that my session would go forward the following day.   In this case, I waited all day and did not hear so ...... I went to the session at the Queensway Carleton Hospital in the Irving Greenburg Cancer Centre.

On Wednesday morning it was a cold post rain/snow storm that coated the city in an icy wonderland reminding me of the Ice Storm 1998.  The city traffic was limited to people who had to go outside.  The grounds of the QCH were beautiful with ice laden trees twinkling in the sunshine.  I parked in a series of spots designated for the Cancer Centre and made my way into the reasonably new facility.  The operational routine was very similar, if not exactly the same as the procedures at TOH.  Suddenly I felt comfortable as I had been feeling a bit on edge with this transition to the new location.  “Someone moved my cheese” and I was reacting to that change.  My session itself was informative as I queried the nurses about what they do, how they were doing it and about their views of the process.  This usually results in some casual conversation while they are working which provides me with a lot of information to bolster my confidence and knowledge of the process and the intended outcomes, reactions and ultimately the effectiveness of the process.  The team I had on that day gave me lots of support as I seemed to be feeling that I needed some extra courage with this session.  The session was the usual 3 hours and came to an end around lunch time.

I was feeling pretty tired after the session but I set about my small number of “chores” in the city before I drove to the cottage to rest up for the balance of the day.  Upon my arrival at the cottage I saw that rest was not as close as I would have liked.  There was a full 10” of wet snow in the driveway as a result of the storm the night before.  We had stayed in the city so the storm dumped snow for about 24 hours without any attention.  I was fortunate as the road snowplough guy had just completed our road but he is not contracted to do my driveway.  To add to the fun, there was no power at the cottage.  We had been alerted of this situation earlier in the day but it still meant some work to get some electricity into the house.  I chose to do the driveway first and then I could move my car off the road.  Thankfully my snow blower started without the usual power assist and I started the task of cleaning out the driveway.  Approximately 1.5 hours later the driveway was a deep gouge out of the level snow across our property.  I parked the car in the garage after I disengaged the power lift for the garage door.  I then turned to the task of getting my generator started and connecting the pony-panel to provide power to essential parts of the house.  That is usually done in the dark as the power usually goes out in the evenings but this time I was lucky to have daylight to work with.  It started with a couple of pulls and power was restored inside the house.  At that time the power had been out about 14 hours based on detective work with clocks in the house.  I checked with Hydro Quebec and their automated system gave me hope that the failure would be reconciled in an hour or so from my call.  They were right and the power came on long enough for me to switch it back for full operation and think about settling down to rest.  Unfortunately, after a brief 45 minutes of operation the power stopped without even a flicker.  I restarted the generator and decided that I had better get some gas as this could last a while.  A run to the Low gas station  fixed the lack of gas and a call to the Hydro proved that we were in a long time without power.  Once I got all that running again I sat down and it was 5 pm.  Where had the day gone and where did I get the energy to get through all of that.  We managed to jury rig the toaster oven to cook up some grilled cheese sandwiches and we heated up a great soup that our friends had dropped off a few days before.  It turned out to be a great meal as we enjoyed a quiet evening at home in front of the fire.  The power returned at 2 am the next day.

On my second day of Chemo I was determined to stay calm and get some rest.  I managed to stay at the cottage for the day and I did indeed rest as the night was filled with hours of being awake with no ability to close and lock my eyes.  The steroid used in the chemo process on the previous day has that effect for about 24 hours.  I had some serious bouts of nausea that resulted in me reaching for my meds to combat such things.   The meds helped with the nausea but I still found it difficult to actually close my eyes and sleep.  I read for some of the day, invested some time in a proposal effort for Lightning Tree and watched some daytime TV to try to lull me to sleep.  The proposal effort was difficult as there were many variables, a need for concentration and we were working with a new organization that was unfamiliar with GOC processes.  I managed to get something out that made some sense – at least to me.  In the evening we enjoyed a nice light dinner, watched some TV and I went to bed early to try for that sleep that was eluding me.

Then, on the third day (Friday), I drove to Ottawa to visit with CCAC to have my bottle removed.  I had a new nurse who was very direct, informative and helpful with my quest for understanding of all the ramifications and impacts that my chemo treatments could cause.  I also asked her if there was a time I could get some assistance with my WBC fighting unit, known as Neuprogen, since the method of self injection was quite different from my experience with Neulasta from earlier rounds of Chemo.  She scheduled a morning appointment with her the following morning.  I was taken by her thoroughness and appreciated her attention to detail.

After my appointment for the bottle removal, I ventured to the Superstore for supplies, Luciano’s for some specialty items, the bakery for some cheese jalapeno and chive bread that I had a craving for and then to the gas station for gas and a car wash.  While in the car wash I ripped a piece of cheese bread and enjoyed its intense flavour.  However I had never felt the impact of the jalapeno as much as I did with that bite.  I had read that spicy food would be a challenge but I had not experienced that effect.  I stopped at one and would wait until I got home and could toast the bread and add some good old peanut butter to it.

Once home I decided to do some snow cleanup outside with Ranger.  It was cold but the exercise felt good.  The snow was no longer wet and heavy as the cold weather had made it hard and difficult to work with.  After a short while doing that I gave up and went for a walk with Ranger.  He was happy to have me throw his stick, run after it and slide down the road as he approached it and then pick it up and run away with it.  This was repeated several times during our walk.  It was fun to watch his friskiness as I froze my ass off.  The balance of the day was whiled away doing email, Facebook and mindless searches on the Internet.  Dinner that evening was a simple spaghetti and meat sauce feed with some great garlic bread.  It was appreciated as my appetite had been crushed by the Chemo treatment.  The only side effect I encountered that day was to pay attention to my bowel and to start the Imodium process for the next period.  Once again, I went to bed early to try to catch up on some lost sleep.

Earlier today, Saturday, I had that great drive to Ottawa and met with the nurse from CCAC to get my instructions on how to manage the self injection process to benefit from Neupogen.  She straightened me out on many sides of this story.  With Neulasta I had received a small pre-loaded needle that was simple enough to extract from the package, shoot up and then dispense with.  I kind of liked its simplicity.   In this case the box from the pharmacy contained 10 small bottles of prescription Neupogen to be taken at 10 different times.  My Dr. Instruction was to self-inject this drug into my stomach with three daily doses after each Chemo session.  So my investment in this drug was actually good for slightly over 3 sessions of Chemo.  This realization made me feel a lot better as the thought of the personal outlay of greater than $400 (representing only 20% of the total drug cost) for one session was not sitting well with me.  With that cost being split over three sessions I was relieved and I was able to accept it more readily.  So the nurse was able to explain all that to me and then she started on the process.  That included washing my hands, opening the three packages, assembling the needle, cleaning the bottle surface, loading the needle with the content of the bottle, checking for air locks, positioning the needle for injection, the injection of the contents and finally the disposal of the paraphernalia.  It certainly was not difficult but having the process described clearly made all the difference in my confidence to do this to myself two more times over the next 48 hours.  In addition, knowing that this may help to keep me on schedule for my next Chemo session was a strong motivator.

Following my informative CCAC visit I managed to get a couple of outstanding tasks off my ToDo list as I made my way back to Lake Bernard.  My physical health was better than in previous sessions as the nausea and other side effects seemed to be abating.  That is the signal that things will progressively improve over the subsequent days.

Warning

Scary or Disturbing Content but appropriate for all ages and will contain little or no violence and little to no sexual content.

I am reflecting on the words of my Dr. Auer when she was describing what I “may” face in the future if she completed some colon surgery after my initial diagnosis of Colon Cancer in Nov 2014.  At the time it made me squirm a tad and I thought she was describing the worst case scenario – or at least I hoped that was the case.  In her words;

“.... you may experience some new sensations such as bouts of gas, some rectal pressure, frequency, urgency, soiled underwear, some accidents and some general discomfort in the affected area.”

With all that deeply burned into my memory we followed our course of action through 2015 which included said surgery and a year with an Ileostomy bag that ensured that my colon had time to heal and enjoyed a year of non-use after the surgery to remove the area where cancer had been observed.  In that year it seems that the colon forgot how it works effectively and provides my body with regular and easy schedules of operation.  My recent reversal (Sept. 20, 2016) was certainly a relief as the manual operations of managing an ileostomy were among my least favourite new skills that I have acquired over my lifetime.  I was happy to re-start a more normal input/output process and happily resumed a normal diet and normal evacuation of a bowel.

You may ask why I am bringing this up at this time and that would be a fair question.  After the operation to reverse the Ileostomy I did experience many of the referred side effects that Dr Auer had mentioned.  These instances happened over a period of time with little to no inconvenience.  It did require attention as some of these effects came up quickly (urgency) and sometimes in quick succession (frequency) which resulted in some humiliating experiences.  I had to be careful about food intake and activity planning.  All of this was taken in stride and managed to the best of my ability. 

However, over the last week I had experienced more of these effects with an increased intensity to the point where they became a concern as well as a serious pain in the ass (literally).  Over the last 7 days this intensity increased to the point where I spent approximately 72 hours feeling that I hated my body as I was experiencing little rest from these effects and several moments with any nearby toilet.  During that period I experienced all, not a few or a couple but ALL, of the effects Dr. Auer had discussed with me 25 months before.  I became obsessed with and controlled by the master of all bodily functions.  It occurred to me that many functions happen unconsciously in our bodies and we are happily alright with that.  When we have a stomach ache we are alerted to the fact that something is wrong and we can take a preventative action to remove the awareness of the stomach’s function from our conscious life.  I believe that applies to all basic maladies that we might encounter with one possible exception. 

First, we must accept the fact that we do not discuss certain subjects in a public forum.  My Mother always told me to stay away from discussions of Religion, Politics and Sex at the dinner table.  She was a wise woman.  I would add that it is also not appropriate to discuss your rectum and its function at the dinner table or at any point or place for that matter.  Unfortunately, during the last week I have shared my conscious thoughts with family members (my apologies to all of you) about my rectum and its disturbing functionality over the short period off time.   I found myself being obsessed with this subject as I spent several periods in my favourite room reading some of my new books from Christmas.  Also during this period I tried to maintain my usual schedule of activities, appointments, lunches and dinner meetings.  That left me in a delicate balance of obsession, conscious thought and my desire to maintain a safe and courteous dialogue with people I encountered. 

This all came to a head over New Years celebrations and the subsequent recovery day called New Years Day.  We entertained some of the “usual suspects” to bring in the New Year at Lake Bernard and my job was to prepare the dinner and enjoy the evening of friendship, good discussion, food and fine wines.  During the prep time it became evident that I would be making the trek upstairs that evening more than once.  All went well until our guests arrived and I got involved in different conversations while preparing for dinner.  I felt the need to excuse myself several times before dinner and then again several times after our meal.  It was my hope that no-one noticed my absences as it is not polite to discuss such things at the table and I was determined to keep my discomfort to myself.  Well, I did tell Freddi of my distress but that was the extent of that discussion.  At the end of the evening the trip count was up to 5 since the guests arrived and counting.  That continued throughout the night and all of the next day.  We travelled to Ottawa where we were in safe company with Tara-Lee and Kaia.  The problem persisted until about 2:30 am this morning.  At this moment I am approximately 13 hours toilet free.  I believe I have turned a corner.

In a recent discussion with my sister on the phone I was informed of an intestinal virus that she has heard of that produces similar symptoms.  In some weird way I was relieved as this may have been what I was experiencing and not dealing with any side effects of my operation. 

If that is the case I would warn folks that such an intestinal virus is out there and it may cause you to   “experience some new sensations such as bouts of gas, some rectal pressure, frequency, urgency, soiled underwear, some accidents and some general discomfort in the affected area”.  Be warned.  

Happy New Year!

Recent events:  I received a call from the hospital and my next Chemo treatment has been advanced to January 4 instead of January 10.  That means I have my blood tests tomorrow and will wait by the phone to hear if the WBC count is high enough to go ahead on Wednesday.  It is my hope that is the case.

Love to all of you and thanks for looking up this blog.......