An Unwanted Journey: Day 1252 – Sabotage!

A prognosis of a terminal illness is sabotaged continuously. How? Well, when you take the opiate-based pain medications, you want them to work their magic. You want to be pain free. But the price you pay for being pain free is that you are participating in a disappearing act. 

“Maybe the prognosis was wrong. After all, I feel pretty good right now. If all it takes is a little fentanyl patch on my shoulder and an occasional pill, then perhaps all this talk about dying is exaggerated.”

Then, sometimes, a couple hours later, as you moan in frustration at the rapidly increasing pain in your buttocks, you get up and reach for another dilaudid.

“This really sucks! This morning I felt great. Now I feel shitty. I guess I was stupid to wonder about the accuracy of my prognosis after all.”

That’s the most common form it takes for me.

But, the conspiracy can take even more subversive forms and involve other people.

“You know how they talk about a person with cancer wasting away until they are nothing but skin and bones? Well, that’s not happening to Dad. He still has an appetite; he still gets dressed and looks good after cleaning up and shaving. He still tells jokes and is as sarcastic as anyone else in the family. Dad looks good for an old guy and is writing. It’s almost like he doesn’t even have a disease, much less something serious like cancer.”

True, the voice of a son trying to make sense of it all will naturally gravitate towards optimism, towards a wish that he desperately wants to become a reality. But when he expresses those thoughts, he is unintentionally aiding and abetting the conspiracy - “the prognosis must be inaccurate after all.”

When summarizing my condition over a few weeks or even a couple months, the pattern seems to be that there are simply good days and bad days; more specifically, days when part of the day is good and part is bad. Again, over that longer period of time, it seems that those days that I can categorize as having a “mixed” pattern are becoming more frequent.

Because of the “pattern”, I find myself entertaining visitors less frequently, often having to postpone or cancel a visit because I have become too ill or fatigued or simply unable to deal with the pain I’m experiencing to “pull it off”. I don’t trust myself as much either. That quick trip in the passenger seat to pick up a coffee at Chapters becomes a major undertaking, a calculated guess about the time required and how close I will be at any specific time to a washroom. Additionally, sometimes I will find myself with my cane walking down the driveway with a plan to walk around the block, but only having enough energy to make it a few houses down the street.

Whatever is happening, it’s becoming less predictable. Being the controlling type personality that I am, I regret and resent it. Sometimes this means that the smile on my face may be a little forced at times. The pain, unfortunately, when it makes itself known in my facial expressions…well, there’s nothing forced about that.

An Unwanted Journey: Day 1249 – My Brother’s Video Tribute

Created by Michael Spencer: Google video tribute to Margaret Jean Spencer

An Unwanted Journey: Day 1249 – My Own Tribute to Mom

Being grateful that I was merely able to be at the memorial on Saturday past, my own contribution was relatively short.

*****

Mom was the single most significant influence in my life. She chose to give me life, even when many would have counselled a young, unwed pregnant teenager to do otherwise. That choice meant she would forego post-secondary education and a career for herself, instead raising a large family on a single household income.

Throughout my life, she consistently sacrificed her own future for that of her children. She offered advice when asked, and even when not asked. But whatever the issue, whether we chose wisely or not, she honoured and respected her children, never once suggesting that her sacrifices entitled her to veto our decisions. To this day, I am still amazed that she and Dad didn’t suggest that I wait a few more years to get married [M and I married when we were 20 and 19 respectively].

She saw some of us make mistakes. And she made her own mistakes. But love, family, respect, trust, faith and honour were always part of her unspoken and unwritten creed. She taught us to be honest with one another, to fight fairly, to admit our mistakes, and to struggle for what we believed was true and good and beautiful.

Mom and I disagreed on many issues, some of which were fundamental and some inconsequential. But whatever our disagreements, we both loved life and honoured the mother-son relationship. This meant that, as a mother, she suffered great sorrow when I was given a prognosis of a few weeks or months with terminal metastatic cancer. It meant that even during our last visit together in Kitchener, we argued with each other, and then hugged and cried and wished that life’s absurdities might be otherwise, never once suspecting she would pass away so unexpectedly.

Now it is I who suffer a deep sorrow. But it is a sorrow tempered with the knowledge that there was nothing left unsaid, nothing false in our relationships. My hope is that when my time comes to say farewell, I will follow her example of death with dignity and a life lived with no regrets.

An Unwanted Journey: Day 1249 – My Cousin’s Tribute to Mom

As I gradually find my way back into the land of the living and make sorrow upon my mother’s death less of a constant moment-by-moment companion, I am including here a tribute from my Cousin Anita.

*****

When I was young, it was really quite simple. We lived on Strabane Ave. It was half a block to Rodney where we could hang a right. Following along Rodney, eventually we would pass our rival, Codrington Public School and, shortly after, Rodney would end on Highland Avenue which veered to the left. From there, Aunt Marg and Uncle Don lived only a few houses away. For as long as I could remember that was the way it had always been. Naively as a child, I also thought that was the way it would always be.

Aunt Marg and Uncle Don lived in what seemed to me a tiny but magical house. In the center of the home, on top of the piano was a black and white photo of five children seated like a staircase in age: Donny, Randy, Steve, Michael, and Paul. I still picture that photo in my mind whenever I need to list off my Spencer cousins. The photo gets me halfway there! Being one of only two children, I loved the commotion created by that full house of cousins. For a good number of years it seemed that there was always a baby around and another on the way. That, to me, was part of the magic.

But there was also something about my Aunt Marg, herself, that truly made visiting her a special treat. As I recall, upon occasion, she would sit down at the piano and her hands would ease their way along the keyboard in a motion of grace that few possess and what I have since come to identify as the sign of possessing a true musician’s heart. Aunt Marg always moved her hands that way with or without the keyboard and that unique movement of grace that she so abundantly possessed, enchanted my soul.

In apparent sibling adoration, my mom informed me at a very young age that Aunt Marg had beautiful auburn hair. I had never heard of that color before, but soon learned it was a shade to be coveted. At that time, Marg’s hair was thick and long. She would braid and wind it several times around her head. She also had a rich voice and a warm laugh. All of these qualities made being with my aunt something special for me.

Over the years, my mom, Catherine Pearsall, has shared with me what it meant to be the middle sister of three girls and specifically what it meant to have Marg as her older sister. What is evident to me each time my mom shares about this is that Margaret led the way. She patiently taught and brought along her younger sisters. She communicated how things were to be done. She led her sisters through the tangled web that defines the journey from childhood to womanhood and she did so with love, warmth, patience and a steadfast faith in her Lord and Saviour, Jesus the Christ. Those qualities have characterized the entirety of Marg’s life.

In her last few days, I feel she granted us all a similar gift. When she no longer could speak she continued to smile and squeeze the hand she held. She let us know without doubt that it was well with her soul. In a way uniquely Margaret she pointed us through the tangled web that defines our journey from life through death – a way marked by love, warmth, patience and steadfast faith.

An Unwanted Journey: Day 1240 – Death Seems to be Stalking

I guess it’s inevitable that an unexpected and untimely death, especially of one of your parents, would lead to elevated personal anxiety levels. That death (as anxiety) is stalking me seems obvious for several reasons.

First and foremost, my coping skills aren’t working.

Take trying to be normal for example. I’m getting out of bed, walking around, sometimes getting dressed if only because the doctor or a nurse will be visiting that day. From an outsider’s viewpoint, there would be little rhyme or reason to my meandering through the rooms of my house. In fact, an observer might be justified in worrying about the state of my mental health.

And then there’s exercise recommendations. I’m trying to relax instead of simply relaxing. I’m trying to breathe deeply and calmly, consciously and without apparent effect. Neither one is working.

And then there is grieving with others who shared the same household with my mother. I invited my father and my brother to visit and, in doing so, felt good about our time together; but then a few hours later the anxiety reappeared and I had to pop a lorazepam just to gain some distance from anxiety. So I guess grieving too didn’t work.

What about writing and research? After all, they’ve always been productive exercises in the past.

During the visit, I was asked to create a written tribute for my mother for the memorial service next Saturday. After doing so, I reviewed what I had written. It felt right. The tone was what I wanted. I was honest and successful in isolating the positive, life-celebrating aspect of our relationship. But a few hours later, it’s as if I hadn’t written anything at all.

Prior to the visit, I searched out and started re-reading Nathaniel Branden’s Six Pillars of Self-Esteem, certain that I would re-discover tools to keep anxiety under lock and key. Instead, I was unable to recreate enthusiasm, finding instead a self-conscious and academic tome instead of a repertoire of life skills.

How about evasion? Maybe a movie or an engaging TV series or episode? Oasis HD is exactly that; namely, an oasis from standard TV fare on the world’s only HD nature channel. We definitely are happy to be subscribers to Oasis HD. One example is the compelling and awe-inspiring Hubble’s Canvas.  Here, at least, the evasion offered is cosmic in scope, with a clear implication that life, however long or short, is blest when we become conscious of the enormity of our universe and the intricate dance of particles, heat, and distance even before the evolution of life.

Evasion is transformed into gratitude and awe, a gratitude that we are privileged to witness in movement of the stars and an awe that overwhelms death and dissolution merely by illustrating the conditions under which life evolves and itself (in the form of humanity) becomes conscious of both life and death.

It could, of course, be simply that the drugs are finally taking effect, timed to coordinate with my viewing pleasure. It could be that the time of day has paired up with the beauty of HD TV to throw a window open to the soul once more, making death and anxiety bit players on a much larger stage.

Whatever it is, I like it.

An Unwanted Journey: Day 1234 – Mom

It’s one thing to prepare for your own death, to contemplate your own life and dying, to consider how your own passing might affect family, friends, colleagues, and acquaintances. It’s quite another to be brought up short by the unanticipated and untimely death of a parent.

Mom died less than 48 hours ago. She died at Royal Victoria Hospital in Barrie, Ontario quietly, surrounded by members of her family, apparently without pain and at peace. Earlier in the day, even though she was physically unable to give voice to her farewells to those gathered at her side, she was able to respond to them with squeezed hands, tears and smiles. In fact, among those of us unable to be there in Barrie, she could listen on Dad’s cell phone held to her ear. We said our goodbyes in turn and she would respond by squeezing my sister’s hand. Monday morning, that was how I said a final farewell to my mother.

As I’ve written before, on numerous visits to our home in Kitchener, Mom and I said goodbye with hugs, kisses, and spoken wishes…but all in the assumption that it would be me who passed first.

Yesterday and today, I’ve been sleep walking through a dreary world, voicing my sorrow to my sons and my wife and weeping when overwhelmed. I’ve spoken on the phone to Dad and some of my siblings either by phone or by MSN Messenger, dearly wishing I could be with them, if only for a few moments, to talk about our memories. Instead, we will have to deal with the constraints of distance and my own health concerns.

Yet again, cancer has stolen something from me – the opportunity to be with those most immediately sharing the same experience, those who dwelt in the same household with me and Mom over the years. That isn’t to say that our experiences are identical. There is the birth order phenomenon, different schools, different religious affiliations and different personalities, not to mention that among the 10 siblings, only 1 was a girl.

Nonetheless, of anyone in this world it is those of us who shared a household with her and Dad, or my aunts who shared another family household with Mom, who knew her best as a family member. Friends will know her in other ways, of course, but family is special. When we are physically present in the same room, when we glance at one another, thousands of memories come flooding back. The atmosphere is charged with those memories. If those memories were threads in a spider’s web, the strings would fill the room instantaneously.

Cancer cannot steal those memories shared with other family members from me, nor can the disease steal away those memories which Mom and I alone shared. But my cancer and her untimely death have stolen opportunities for new memories. And I resent that very much. I am bitter about that loss.

Still, in my more sanguine moments, I realize that we now have a chance to build and recreate the narratives of my Mother’s life, narratives which will help us face the future with renewed vigour and strength. My youngest brother, for instance, will be able to tell L, his daughter, all about Grandma, how she loved her family and cared for us all, how she embraced her faith and encouraged each of us to find the source of all truth, of all goodness within. He will take her example and create a foundation for not only L, but for each of his children. As will my sister with her daughter. And, if we are wise, those of us slightly older and with children slightly older will still build stories of the woman who gave everything for her children.

When we gather, there may still be moments that seem abnormally still, gaps that Mom would have filled with thoughts about distant family members, about politicians run wild, about anything that occurred to her. I’m sure there will be some smiles shared then among us, recognizing her in her absence, and then each of us jumping into the gap as if accepting her implicit challenge. If we are wise, we will use those opportunities to build narratives not only about her but about all she would want us to be.

An Unwanted Journey: Day 1231 – The Natural Order of Things

My mother and father have visited me quite a bit since I was discharged in late November from hospital to home hospice/palliative care. They’ve seen my ups and downs, moments when I can hardly keep my eyes open from the fatigue or times when the pain is overwhelming, and other times when I greet them at the door, proud that I have the energy to do so.

At the end of some of those visits, Mom has often slipped me some money instructing me only to buy some telephone cards. That way, she and Dad wouldn’t worry about waking me when I should otherwise be resting. I could call them instead using the phone card. While visits are always better, the truth is that the 2-hour drive between their home and my home has been difficult during this long and cold winter. Phone cards and regular conversations minimize the distance and worries about car travel for them (I really can’t make the trip, no matter how much I would like to do so).

On a recent visit, when I was feeling especially weak and in pain, Mom whispered in my ear, as she hugged me and said good-bye, how her deepest wish was that I would recover, that God would provide a miracle, a miracle in which we would follow the natural order of things; namely, that she the parent would pre-decease me the child. In effect, she was wishing for her own death and for my life.

I get it. I’m a parent too. Like her, I would never want one of my children to die before me.

To her, I’ll always be her Donny, the first-born and eldest child. Mom has experienced the out-of-order death of a child twice before. I think anticipating a third death weighed heavy on her heart.

But life and luck sometimes continue to trip us up and kick us when we’re down.

A couple days ago, Mom fell while leaving their house to go for a ride in the car. She broke her hip, a clean break and one that would normally be amenable to a plate-and-pin mending procedure.

Things were looking good. Then today we discover that she will not be getting that surgery after all. For a variety of reasons, she will not be recovering from her fall. Instead, it appears almost certain that she will predecease me after all. Her medical team will do all they can to keep her pain free, but there isn’t much more they can do for her. She is dying.

But she is responsive. She is loved and she knows it. That is something we share with one another. Although circumstances should be different for both of us, there are two certainties, the physical certainty of death and the emotional certainty of our love for one another. Whatever the timing and however nasty and unfair it might seem, love takes away much of the sting of death’s tragic inevitability.

An Unwanted Journey: Day 1228 – Neuropathic Pain and Terror

This week has been about pain, nightmares, and adjustments. Outside, the weather has switched from the bitterly cold to warm, from windy to calm, from sunny days to rain, from people walking their dogs just to get outside and enjoy the spring to the same people huddled around their television set watching American Idol or the series final of ER.

On the inside, there have been some parallels. My blood clots have aggravated some other nerves in the right leg resulting in some very difficult evenings dealing with the pain. But my pain and system management team has come to the rescue with changes to my pain medication regimen.

To summarize those changes, I’ve gone from 100 mcg/hr to 125 mcg/hr for the 72-hour fentanyl patches, from 6 mg to 8 mg dilaudid doses (after removing the pain pump at my request simply to avoid the inconvenience of carrying a pouch at my hip 24/7), maintaining the gabapentin doses of 300 mg twice a day, and adding 10 mg buscopan pills twice a day to reduce bowel spasms. Now, late Thursday afternoon, I feel like we’re making some good progress again.

But apart from dealing with pain and changes in pain management, there have been the night terrors. Not quite the same as nightmares, the terror I’ve experienced doesn’t involve any dream content. I merely jump awake, usually yelling something indicating complete and utter terror, clutching the sides of my bed and desperately calling for help.

The new or increased pain medication is probably the cause. During this week, I’ve gradually become accustomed to both the terrors and the drugs so that last night, I didn’t even have an episode. But even if I did, the realization alone that there is a causal relationship between the drugs and the terror is sufficient to mitigate the fear and restore a sense of balance.

Never a dull moment – outside or inside! But at least these days, as we enter into April showers followed by those wonderful May flowers, there is much to anticipate. Although I am receiving fewer visits these days by choice (terror and pain will do that to you), I anticipate spending time with family and friends again fairly soon. One thing I am eagerly anticipating is seeing my sister-in-law and brother-in-law freshly back from their world travels where you can board a plane one day in Japan and arrive at your destination in Canada 60 minutes earlier the same day!