Donald Wilson

The Regional Palliative Care Team recommended a stronger medication as the best tool for control of cancer pain.  In order to monitor the effects and determine the appropriate dosage, I was admitted to Grey Nuns hospital on November 12.  It took until November 20 to confirm that the dosage was sufficient to deal with the pain at the current levels yet not result in significant side effects (hallucinations, seeing or hearing people who aren’t there, feeling something or someone touch me who isn’t there).  I was released for the weekend and when there were no changes over the weekend, I was discharged on Monday.  While I was in the hospital, they discovered a clot in my leg again, so I am back on daily injections of anticoagulants.  More fun.  In the meantime, my mobility has continued to decline.  I use a wheelchair in the house, even for relatively short distances.

In an earlier post I mentioned my focus this year on Live, Love, Laugh, Leave a legacy.  To further explain what I mean:

Live- I have spent most of my life focusing on my career, working up to 70-80 hours per week over the past 30 years.  Until the last five years I took few vacations and those were generally short.  I began to spend more time each year in Barbados.  Last year we took a tour of Turkey, followed by a Mediterranean cruise.  I started to look forward to more of the same including more local trips and attractions.  Edmonton is the festival city and when you combine what all the festivals offer with all of the cultural, sporting, arts, and musical events, I committed to try to attend as many as possible.  I would encourage everyone to place their focus on living life ahead of or at least equal to their career.  If you love what you are doing, the money will follow.  You can get tremendous enrichment from events that may cost next to nothing.  Take advantage of them.

Love- This past year has given me the opportunity, and I have taken it, to spend more time with friends and family.  I would encourage everyone to do this, and to not wait until you feel you have more time.  You will enrich your life as well as the lives of those that you touch.

Laugh- Humour has helped to relieve my pain.  While visiting with family and friends, I have nearly been brought to tears, laughing while reminiscing about past escapades, (including chasing skunks and riding pigs!).  We often take ourselves too seriously, particularly at work.  None of the mistakes that I have made in my career have been fatal.  They represent opportunities to improve.  Recognize the humour in situations, especially if it relates to your actions.  Laugh at yourself and others will laugh with you.  Look for opportunities to learn through the humour.  Life is too short not to laugh.

Leave a legacy-  Some think of a legacy in terms of giving money to a charitable, religious, health care, educational or similar organization.  While having contributed in that way,  I think my more important  legacy may have been generated over a number of years, and can be quantified in terms of what I have taught others.  What I have tried to communicate over the years includes the importance of environmental sustainability, of economic incentives to drive behaviour, of grammar and spelling, of obtaining as broad an education as possible, of doing what you love- the money will follow, of breaking 100, then practicing to improve stroke by stroke, of paying attention to the details, thinking about each step in the process and how it affects each subsequent step, of remembering that email is a very poor tool for communication- it is so easy to misinterpret.  I’m sure there are others, but it has become clear to me in the past few years that my value in any organization (my employer, boards on which I have sat, professional and community organizations) has been in mentoring.  I have also learned so much from others in each of those organizations, which has made it easier for me to pass on knowledge.  The essence of the above is sharing, whether it is wealth, knowledge, or something else.  Enrich the lives of others.  My greatest legacy is living as full a life as I could, laughing as much and as often as possible  and loving my family with all my heart.

We have made a few improvements to aid in mobility.  Most of the problems we had with the stair lift (track, seat, power unit) have now been resolved.  The supplier also moved the upper lift to the opposite side of the stairs so I now walk out of one directly into another, rather than trying to pirouette from a face-in-the-wall position to the other chair.  We bought a lightweight transport wheelchair for use on the main floor and family room.   We installed a ramp from the kitchen to the family room (2 steps) so I can be wheeled down, as I can no longer navigate steps.  Our neighbour Gregg installed a landing inside the garage and we installed a ramp from there down to the floor of the garage so I can be wheeled to the car door.  Home care were out again last week and recommended a bath/shower chair that assists me in getting in and out of the shower/tub.  This has proven to be very helpful.

The Palliative Care RN came to the house on Friday and reviewed my status, especially my pain medication.  They are considering further changes and will review again next week.  I have been on the new pain patches for less than a week.  There has been some improvement in pain levels.  We can continue to increase the dosage over the next couple of weeks and if this addresses the pain we may not need to make other changes for awhile.

Early in September the Cross Cancer Institute (CCI) advised us that because the chemo and radiation therapy were not reducing the tumours and had resulted in unpleasant side-effects they would be discontinuing any further treatments.  They also advised that I was not a good candidate for clinical trials because of the advanced condition of my disease.

We sought  out a second opinion from WorldCare which has access from some world-class international hospitals, including the Mayo Clinic.  We provided all of my medical history to them, along with copies of CT scans, X-rays, and other tests, including biopsies.

We received their report last week and reviewed it with my family doctor yesterday.  WorldCare agrees with the conclusions reached by CCI and that the focus now needs to be on reducing the pain so that I can be more comfortable.  My mobility has become even more of a challenge, so we are looking for ways to address this problem.  As part of this effort we just had a stair lift installed so I can get up and down the stairs from the main floor to our upstairs bedroom.  We are considering a light-weight wheelchair to enable me to get around the main floor and a bath lift to make it easier to get in and out of the tub.  We are also reviewing the pain medication to see if we can get something longer lasting so I can reduce the number of pills I swallow each day.

Now that we are back home and trying to get more comfortable, I look forward to seeing visitors again.

We returned from Palm Springs last week.  Travel was extremely hard on me, especially on the way down, as we did not have a direct flight.  We quite enjoyed our time there and hope that Scott, Michael, Heather and Darryl also enjoyed their time with us.  I did not spend much time in the sun as the deck chairs were not very comfortable, but I was able to get into the hot tub nearly every day.  This became more difficult near the end of the trip as I found it hard to climb the stairs out of the tub.

I spent a lot of time lying on the couch doing Sudoku puzzles.  I found that I could lie on one side for a limited. time.  This has continued since our return so I have had difficulty sleeping.  My pain has also increased.  We increased the dosage last week, but the medication seems to be ineffective in controlling the pain.  We may need to consider a further increase or a change in medication.

My difficulty with stairs has also continued at home.  It deteriorated to the point where the boys had to carry my up the stairs in the evening.  We had a stair lift installed on the weekend and once it is operational I should be able to go up and down the stairs easily.  This will remove the fear of falling that I had every time I had to negotiate the stairs.

I look forward to continued visits from friends and family.  These are so greatly appreciated.

The last couple of weeks have been busy with visitors- it was great to see all of you- return visits are welcome.  Last couple of blood tests have shown no significant changes, although pain levels have been gradually increasing.  Haemoglobin has been stable, so no need for transfusions.  I will have my blood tested again later this month when we return from vacation.

Diana came to visit us for a few days.  She also took in a high school reunion and visited friends.  It has been great to see her.

Tomorrow we head to Palm Springs for a vacation.  We hope to relax, soak up some sun and rest in the hot tub.  Scott and Michael will join us for a few days, as will my sister Heather and her husband Darryl.  We look forward to talking to everyone on our return.

Annis Horribilus.  It was September 25 2008 when I noted the first symptom of what was ultimately confirmed as cancer.  What a year.

I stopped into the office on the Friday just before the long weekend.  It was great to see everyone, and good to note how many staff were there working.  It has also been wonderful to see so many visitors at the house in the past few weeks.  Last week we ventured off to North Battleford, where we were pampered by my parents.  We were able to get together with so many friends that we had not seen for some time.  We also enjoyed celebrating my sister’s 24th!  😉  birthday.  We dropped into the office in NB.  I spent 14 years with this terrific group of people.  We had a delightful time over coffee.  Great to see that so many are still there and that they are still fun to be around.

We drove to Saskatoon for a day.  Had lunch with one couple of friends and dinner with another.  Dinner included transportation in a limo (Thanks Brian and Marlene).  We met up with my aunt in the afternoon- good to see her as well.  It was a long day, but very enjoyable.

We don’t have any plans for travel in the short term.  My calendar will be filled with medical appointments, and with visitors, but we are looking forward to trying to get away around Thanksgiving.

Went to Banff last weekend.  Stayed at the Banff Park Lodge.  We have stayed there before.  Very close to shopping and restaurants, and good wheelchair accessibility.  We enjoyed spending Friday, Saturday and Sunday with friends from Calgary and Canmore.  Also had the opportunity to travel on the Gondola to the top of the world and to spend time in the Hot Springs.  That, combined with great weather- what a wonderful weekend!

Yesterday I was in for a blood test, and to meet with the oncologist to discuss the results of the CT scan I had last week.  The CT scan showed that the radiation therapy had killed a bunch of cancer cells around my lymph nodes in my groin.  They have done as much as they can in this area- any more would risk damage to the bowel.  The scan also showed that chemotherapy has been ineffective, as the tumours on my lungs have continued to grow.  So we have decided to discontinue chemo, as it is not providing any positive impacts, and has only negative side effects.  The blood tests showed me low in haemoglobin, so we used this morning’s time slot to get a transfusion of two units of blood.  They have indicated that radiation on my lungs might prove to be helpful in spot treatments, if I experience wheezing, or bleeding, or difficulty breathing.

Sadness in the Wilson home this week.  Our much-loved pet Muffy- a 13 year old miniature schnauzer- passed away on Tuesday.  Many tears were shed for a close friend who cannot be replaced.

Over the next few weeks, my focus will be on visiting friends and family, and taking in concerts, festivals, and anything else I might find enjoyable.  Live, laugh, love, and leave a legacy.

Thanks to those who have visited, and who have kept me laughing with various emails.  Keep it coming.  I enjoy all of it, and love having visitors.

Had chemo on August 13.  Had some nausea over the next 5-6 days, and certainly was tired, but other than that, side effects were minimal.  Nurse got high marks for her IV work.  Or perhaps we are learning what to tell them to assist in getting it right the first time.  The Edmonton International Fringe Theatre Festival (“the fringe”) started that day and runs through today.  For years I lived in Edmonton and never had (took) the time to take in the many festivals (now about 30) it offers.  A few years ago we had an opportunity through a supplier to take in the fringe for a day.  I think I saw four plays that day.  Each year since I have seen more.  The last couple of years, despite the pressures of work, I saw about 10-11 per year.  This year- only one.  And that was difficult.  Turns out that a one hour play actually takes about four hours, by the time we drive from home to Strathcona, find a parking lot, trundle me in a wheelchair across uneven pavement to the box office (and this wheelchair is designed only for very smooth, flat surfaces), stand in line to pick up tickets, trundle the wheelchair across more uneven pavement to the venue, stand in line for the doors to open, wait for the play to begin, watch the play (and this was one that I did not particularly enjoy), wait for the theatre to clear out so we can manoeuvre the wheelchair, trundle me back to the car and drive home.  Too long to be sitting- my back and leg were really sore.  And I did not get an opportunity to try a deep-fried chocolate bar this year- no reward.  Also had planned to take in the Labatt Blues Festival this year, but the logistics of that might have been overwhelming.

Have a CT scan on Wednesday, then hope to rent a van for next weekend and head down to Banff.  Hope to spend some time with a few friends there.  Next chemo scheduled for September 3.

The cancer along with radiation and chemo treatments have reduced my haemoglobin once again.  I received a transfusion of three units of blood yesterday.  All went well, but the continued need for transfusions is frustrating.  My next chemo has been scheduled after regular blood tests for August 13, and then a CT scan for August 26.

The results of the CT scan will impact the decision on continuing chemo.  That decision will also be impacted by expectations of the positive impact of chemo weighed against negative side effects.  The oncologist has indicated we should consider the quality of life against the additional benefits that more treatment may bring.  We will likely have that discussion after we see the results of the CT scan.

We hope to be able to rent a van this weekend to travel to Macklin to visit Vicki’s mom.  Depending on my treatment schedule, we hope to travel more this summer and fall- perhaps once again to the mountains- and also more visiting friends and relatives.

Had a great weekend in the mountains with the Bennetts.  Weather was perfect, had some wonderful meals, saw some wildlife and terrific scenery.  Glad they continued to insist on the trip.

July 15, I was given a couple of units of blood as the radiation had my caused my haemoglobin to get a little low.  July 16, I had another round of chemo.

July 18 was Dad’s 80th birthday.  I was unable to travel to N. Battleford for the celebrations, so I’m glad that everyone was able to travel here. We had 21 here for supper and 18 here for brunch on Sunday morning.  It was great to get my family together.   From all accounts it was enjoyed and luckily, it was unaffected by “the storm of the summer”.

Between the chemo and the birthday celebrations, I was left tired out for a week.  The chemo left me with nausea and reduced appetite and I am just now returning to normal.  My leg is now less swollen, but still painful  and I have some numbness and tingling in my leg, feet, and hands, along with shortness of breath, especially after exertion.

It has been great to have room air-conditioning, especially as temperatures have approached or exceeded 30 degrees.  Looks like temperatures in the next couple of weeks will be quite warm, so I will want to try to take advantage of our summer- will be looking for opportunities to both rest and enjoy.  Thanks to everyone who has visited in the past few weeks.

My next chemo is scheduled for Aug. 6, so my enjoyment may be somewhat limited for the week or so after that.