July 8th, 2020 ~ Vol. 90 No. 27
Looking Back - John Kinnear
A Moment in Time – A Perfect Storm - Part IV
Looking Back
John Kinnear photo
Lorraine and Nancy- Christmas 2013
Read: Part III - A Moment in Time - The Game Changer

Death leaves a heartache no one can heal,
Love leaves a memory no one can steal.

Before I walk you through the last six months of Lorraine’s life I want to double back on her story to an element of her persona that made her so distinctive. It was, of course, the trademark pinking strip in her hair that she religiously maintained for 13 years. This was not just a style fancy; it was a deliberate act designed to acknowledge and commemorate a cancer warrior who had preceded her.

That warrior was my sister Nancy, who pushed back against that malevolent force for 7 years before she was finally overwhelmed by it in May of 2015. She was indeed a warrior and used every tool at her disposal to keep her cancer in check and stay in the game. So Lorraine’s pinking was her tribute to a truly remarkable woman who had the voice of an angel. What a terrible irony that Nancy’s curse would turn on Lorraine.

I left off last week by relating that early in January Lorraine’s condition took a very serious turn and she wound up in emergency several times before she was finally hospitalized by mid-month. There were no less than four trips to our local emergency which were intermixed with ultrasounds, CT scans and an MRI in Lethbridge.

Shortly after mitigating the clot issue I mentioned last week, Lorraine descended into a state of massive fatigue, blinding headaches and nausea that completely incapacitated her. Eventually our vigilant Home Care representative recommended we take her to emergency and by the end of the day on the 14th she was admitted. Rehydration and stronger pain meds (morphine) slowly brought her back to about where she was in late December. She finally made a trip to consult with her oncologist at the Tom Baker via a NAT van (non-ambulance van) on the 25th. and Kelly Anne and I followed her to Calgary.
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At that point she was already three weeks late for her next infusion and it was there at the Baker we learned what had really happened in January. It seems that one of the two immunotherapy drugs, called Ipilimumab, had permanently damaged her pituitary gland. This pea-sized master gland at the base of the brain controls a vast array of our body processes and is pretty damn important. When it doesn’t function we, in turn, don’t function very well at all. Thus the catastrophic crash she endured. Lorraine had almost no cortisol in her system, a critical hormone we all need to help us handle stress and pain.

There was no infusion that day and the immunotherapy culprit also known as Yervoy was taken out of the infusion regimen going forward. A prescription for Cortef, a hydrocortisone, was issued and on returning home Lorraine continued to improve somewhat and was getting about a lot better.

I should tell you that from the moment she entered the hospital in January her care was extraordinary at all levels. Occupational Therapy pounced on her even before she got out of emergency and we were assigned a wheel chair and walker before she was even taken to her room. The level of professionalism and kindness we encountered throughout the following five months was remarkable. The system worked well at all levels, communication was really good and the resources that were put into play should make us all proud of our health care system.

In early February Lorraine finally had another infusion at the Baker and the pre-treatment consult revealed another issue I had been worrying about. Lorraine’s thyroid level was also poor, which is probably no surprise considering the pituitary is directly linked to its production. Yet another prescription for a manufactured form of thyroxin called Levothyroxine was issued. Symptoms of low thyroid like fatigue, sensitivity to cold, muscle aches, weakness and so on were not what Lorraine needed added to her condition.
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In early March there was one more infusion trip after which she was told there would be an assessment CT scan followed by a consult. Like the Halloween CT scan, we dreaded the results this one might bring and given the badly delayed progress of her treatment, we were not very optimistic. At this point we were just looking for time. She was told right from the get-go that the cancer was incurable and that her time would be limited to the measured success of the treatments. We just wanted some time. Time to be together and to live our lives, within our deep love, for as long as we could get.

The March 25th CT scan revealed the cancer had spread more extensively in her lungs and onto her liver and now was growing in the spot where her right kidney used to be. The oncologist called and, as we suspected, said there was no point in continuing. We chose to ride this storm out in as planned a way as is possible in these types of situations. One day at a time.

South Alberta Home Care had been connected to us from the very beginning and they guided us thought the process with the highest degree of professionalism and empathy. It is hard to describe in words just how important these people can be in your lives as you head down a life-ending road. They provided important counsel to my daughter Kelly Anne and me. We had been working extraordinarily hard since early January to make Lorraine as comfortable as possible and were told by Home Care, time and time again, that we made an amazing team. It was gratifying and really hard work.
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Through Home Care all the devices needed to keep her comfortable were made available through a special plan. Walkers, wheel chairs, commodes, shower stands, an adjustable electric hospital bed and towards the very end a special alternating pressure mattress were put into play. They were always but a phone call away and always accommodating. Occupational Therapy people conducted an assessment on our house and our needs and delivered everything to our door. Our case manager was an angel sent to look over us and who coordinated all aspects of Lorraine’s care including liaison with her doctor. She played a vital role in maintaining Lorraine’s comfort.

Lorraine and I managed a few road trips to see early spring trying to break through. It was her favourite time of year, a time of renewal. There were a couple of more dancing trips to Pincher before she became too weak to get about. The cancer stripped the strength of this wonderful woman away layer by layer. It was heartbreaking and as I write this I can feel the fear regripping my heart like it did 17 months ago.

Lorraine was certain she wanted to go through the assisted dying process (MAID) and in April we went through the somewhat onerous steps of application, witnesses and interviews to get approval. This is a very important process if your passing is inevitable and you want it to be as comfortable as possible. That’s not to say that palliative care can’t take you that way without it, but it is a guarantee you will leave with some level of comfort and dignity.

As we moved slowly towards this planned end Lorraine, Kelly and I came up with a novel way to acknowledge some of her dearest friends and give them a chance to say goodbye. It is like the old Japanese birthday custom where the celebrant gifts the guests instead of vice-versa. Lorraine selected special items, keepsakes if you will, that she wanted to give to those she cherished. In the midst of the COVID menace we managed to pull this off, being very careful to keep things as safe as possible. It was important and it motivated Lorraine and gave her joy at a time when she saw the end.
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You can imagine what it was like, with the virus threatening all of us, to contemplate her contracting it. There would be no goodbyes. It was terrifying. I wore my hands out with alcohol and soap and obsessed over every little thing that presented a threat.

In the end the morphine after-effects took over Lorraine on the May long weekend. We had by then switched to hydro morph by syringe and fentanyl for short-term relief when moving her but it was too late. We didn’t catch the toxicity signs soon enough. Her liver and kidney were not ridding her body of the opioid toxins and that combined with dehydration caused her to lapse into an unresponsive state and the critical component of assisted dying was lost. That is to say, one must be able to acknowledge verbally, more than once, at the time of administration, that this is what you want.

We were consoled by the fact that Kelly and I had worked tirelessly for months to make sure she was pain free and when she slipped away it was cathartic but, as they say, a blessing.

Lorraine used to marvel at her heart. When we were in hospital in January a resident doctor who took a liking to us asked to practice his ultrasound training on her. I have a small ultrasound video of Lorraine’s beating heart on my phone. She asked me one day to do the math on this remarkable organ that beats from the day we are born to the day we die. So here it is Lorraine. It was 81 years, 138 ½ days which equals a total of 29,703 days times 24 hours, times 60 minutes, equals 42,773,040 minutes. Lorraine always had a fast heart rate, 90 beats a minute. That comes to 3,849,573,000 beats Lorraine. You did really well sweetheart and my heart will be with yours always.

Author’s Note: A critical element of the end of life process is that one have the definitive Personal Directive and Goals of Care forms completed and updated as the situation changes. Everyone should have these done regardless of whether they are in a life-threatening situation or not. You owe it to yourself and your family to lay out these terms.
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July 8th, 2020 ~ Vol. 90 No. 27
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