In navigating myeloma, we’ve had to draw our own map

The other day, I discovered an old, folded road map in the glove compartment. It had faded colors and deep creases. After I spread it out on the passenger seat, I began to trace the routes my mum and I took many years ago. I could recall the visits to family members in other states, trips to the coast, and other similar adventures that involved a known destination and a definite path to get there.

I immediately felt a profound sense of loss as I stared at those confident, unwavering lines. For a moment, I thought about all I was going through as a caregiver. My mum’s myeloma is unlike any journey we’ve embarked on before. The saddest part is that there’s no map to guide us.

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The illusion of a guide

In the early days after her diagnosis, I used to hunt for maps everywhere. I devoured caregiver guides, treatment protocols, and the medical websites of institutions like Mayo Clinic, Cleveland Clinic, and Johns Hopkins Hospital. I anxiously looked for dotted lines labeled “This way leads to safety.” I was also seeking a legend that could offer explanations for the landmarks of grief, the valleys of guilt, the mountains of repetitive routines, and the terrain of fear that had suddenly surrounded me.

I used to be so sure about my plans for the future. But suddenly, there I was, looking for certainty in a landscape defined by so much uncertainty. Myeloma doesn’t follow a predictable route. It is a rare cancer that has its own backroads and dead ends that appear suddenly without warning. The map I had been seeking did not exist. And the frustration of searching endlessly without finding it didn’t just fill me with anger; it almost broke me.

Learning to navigate by the stars

As a caregiver, you will be forced to learn to navigate without a map. You will discover that you have to stop searching for a path others might have prescribed, and instead, find your own personal guides.

I have many guides. For instance, when I hear my mum laughing, I know I have found a fixed star in a dark sky. When a nurse shows us kindness in the hospital, I regard it as a lantern being held out in the fog. Whenever I experience the quiet understanding of another caregiver, I feel as if someone has shared with me a compass. And when my mum and I have a good day together, that is true north.

This type of navigation is fragile and relies heavily on intuition. You must learn to put your faith in moments, not in the plans you have made. This journey is less about how sure you are of the route and more about trusting in your ability to find your way through the uncharted darkness.

Drawing our own map as we go

After all these years, I have come to see that we are not lost. We are cartographers of a land that no one knows. When we make a difficult decision, we are drawing a new line. When we share a small, joyful moment, we are marking a source of light. With each setback we experience, we are charting the depth of a valley we never knew we could cross.

There is nothing pretty about our map. It is scribbled in the margins of hospital discharge papers, etched by tears, and redrawn with every lab result we receive. However, it is ours. It is a record not of the places we were supposed to go, but of the places we have been, and evidence of the fact that we are still on the move.

The only landmark that matters

We may not know how steep the path ahead of us will be. What the next mile holds is a mystery, and the weather could turn without warning. However, I have finally stopped looking for a nonexistent map.

My mum is the only landmark I need. We’ll never be truly lost as long as we’re by each other’s side. We are simply explorers in this heartbreaking and beautiful wilderness of now.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.