I had a vision of a path that took a straight line and all would have been fine, except the Universe had other plans….
This week-end is the Canadian Thanksgiving week-end and it seems timely to extend thanks and gratitude. My world owes everything to those who care.
In December 2022, my husband Wayne was diagnosed with chronic lymphatic leukemia (CLL). These are scary words. This is not the common cold, this was not in my plan. If you asked me who would be struck with an ailment, I would have said me. Wayne is strong, healthy, forceful and able to take on any situation by just lifting his finger. If the world were to fall apart, Wayne was the person to guide us through. At least, that was the line I told myself.
With his diagnosis, we were told he would be on “watch and wait”. This was perplexing to me. Watch for what and how long would we wait? Modern medicine was clearly letting me down with this “vague” description of a diagnosis. More specifics would have been helpful. Will he lose his hair; oh right, age took care of that so maybe the question was “what part of life will he lose?”. On the darker side, I have to admit that I found myself wondering if should I buy a new black dress and speak to our lawyer? Was “watch and wait” normal or something else? According to my CLL support group, “watch and wait” could be years. Except that it wasn’t.
Getting a diagnosis that is completely unexpected is scary. LEUKEMIA is all I heard. People tried to tell me that it would be ok but until it was “ok”, it didn’t feel “ok”. I felt unhinged. I felt untethered because I wasn’t sure what was next.
Since his diagnosis, things weren’t ok. He was not the same. He couldn’t hike for hours or be faster than a speeding bullet or more powerful than a locomotive or even leap tall buildings in a single bound. During the winter of 2023 / 2024, he could barely walk down the driveway. His blood levels were so low that short walks had him gasping for breath. A small bump became a massive bruise and everything was just too much to take on. It was a miracle he could work and when he got home, all he could do was sleep on the couch. People said you could live for years with CLL. What they didn’t say is that just because you are living, it doesn’t mean that you feel alive. Ah, the insight into what “chronic” can mean and how to live with that.
CLL is a blood disease. I watched the man that I loved fade to someone I didn’t recognize. I remember reading a comment from someone who said “I’m so angry today. This disease has stolen my husband and I just want my him back”. I felt that. In April 2024 the blood results showed that “watch and wait” was over. Treatment was inevitable.
This is where I became a neurotic mess. OK. That’s not true. This is when I became a bigger neurotic mess. I really needed to know what was going to be happen. What was next? What was coming round the bend? It was the darkness of not knowing that kept me up at night. I imagined all possible scenarios and not one of them saw me looking younger with Wayne looking tanned and relaxed. The thoughts I kept having to push out of my head was “will he get through” and “how long does he have?”.
I remember the day that he started his chemo. We entered the elevator pushed the button for the eighth floor. There was a little plaque beside the number “8” that said CANCER WARD. I was scared and I tried not to cry.
We arrived at reception and the hospital foundation greeted Wayne with a handmade quilt. It was beautiful. It was a symbol of care, a metaphor that he was not alone.
He was hooked up to chemo for eight hours and when it was time to leave, he could barely stand. I had the check list of all the possible side effects and this was one time when we weren’t looking for 100% success. For someone so strong, it was hard to hear “this is the worst fight I have ever been in”. He was beaten and I realized what it meant when people say “fighting cancer”.
The next 24 hours were a blur and he ended up back in the hospital with tumour lysis syndrome. If you look this up, the description starts with “CAN BE FATAL”. At this point, I had to ask myself if my black dress would fit. I could barely breathe and was hardly holding on.
Things were difficult and why I have chosen to write today. We were in a tough situation. My straight path crooked but round the bend, it got easier. It was made easier and less heavy because of so many people in our life who cared. There was plenty that happened including COVID and more (we’ll save “complications” for another time). It was chaotic and living 90 minutes away from the hospital didn’t make it easier. It was our people that made it easier and today, I give thanks.
I tried to go into this feeling prepared but I don’t know if we can ever be prepared or be ready. The hope is for the straight line but that’s not life. Thank goodness for love.
In times of trial, it is easy to get lost and lose sight of what matters. My first inclination was to go it alone but what a foolish position that would have been. Oh look, is that my ego sitting next to my pride on the pillar of righteousness? Yes, it was.
Today I give thanks to every single person who took time to care. To those who offered places to stay, who sent care packages, to friends who banded together to give a moment of pause financially and to all those who called, texted and even came to help us move. The summer of 2024 will always be marked as the summer of gratitude. Not only for the many people who chose to keep us close but also for the miracle of medicine that allowed Wayne to bounce back.
This summer gave me the gift of humility. I didn’t understand chronic or what it is to struggle each day. Cancer felt like the end and for us, it wasn’t. It has been the catalyst for a new beginning; of learning what we can do despite of what happens.
I should mention that while I was rummaging through my closet looking for a black dress, Wayne was working hard to adjust. Not once did I hear him complain. He never lamented on what he was losing and always looked to find the positive. He stayed focused on what was important and kept thinking forward in a positive light. I was immensely proud of him. I don’t think I could have been as brave or as strong. He showed me what one can do, even in the eye of a storm.
If I had tried to navigate the path on my own, in retrospect, I realize that I would have fallen. My thanks is to everyone who didn’t let go, who kept us standing, who hugged us close and who gave us courage when we were afraid. My gratitude is for the whole experience; to learn how important it is to offer help but also to allow others to help. I thought I could go it alone. I was wrong and I am indebted to all those who chose to climb in through the window when I wasn’t answering the door.
“God draws straight with crooked lines”
“God draws straight lines with crooked lines”. Maybe it’s not God, maybe it’s the Universe or something else. For me it is and was God. I wanted the straight line, the easy path but He gave me the crooked line and in doing so, I learned so much more and I feel more human than ever before. I feel more mindful, more connected, more humble and certainly more grateful.
That’s not to say that crooked lines don’t bring pain and deep sorrow. This is more to say that life isn’t straight forward; it gets crooked when we least expect it. We all have “something” and in that, there is something to be said for being a little softer with one another.
Sea otters have an exceptional sense of community and how they live is how I felt. Sea otters need one another because they are vulnerable on their own. Because they don’t have a great deal of body fat they need to huddle together to stay warm. At night, they group together and they hold hands to make sure that no one gets lost or drifts away. This is my experience. My people held our hands and we didn’t get lost and no one let us drift away.
It’s hard to accept help; to admit when things are hard. In an era when so many people feel adrift, I wonder if we just need to find more ways to connect. To ask better questions, to check in more often. People laid their daily routines aside and made time for us and in turn, the difference they made has been unforgettable. The path is crooked but maybe if we hold hands as we go around the bend, we can feel safer and more connected and maybe realize just how loved we are.
To all those that never let go, thank you. It meant the world.
With love,
Shelley
- Being Fired & Letting Go….
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And Then I Jumped...... 