An altar is a place of transformation. It is typically a physical space where tokens, mementos, and sacred souvenirs are arranged. Aside from any religious meaning, the use of altars is found across cultures. An altar is simply a place to remember. My connection to multiple myeloma is like an internal altar. Mine is a storybook that began about ten years ago during the fall season.

This time of year, I seem to revisit the pages of my book more closely. Strangely, this is not a story I want to throw away. As a child, I recall having endless curiosity in hearing the tale of how my parents met. My myeloma story has a similar quality for me, as if the course of events holds the secret mystery of my life.

After a year of subtle signs and two months of extreme symptoms, I still had no diagnosis to explain why I had become more and more ill until I was bedridden and unable to walk. I had attributed these feelings to straining my back while moving furniture, but it was clearly becoming more serious.

After being unable to keep anything down for days, I telephoned a number of friends one Sunday morning in search of someone to come over to make me hot chocolate. It was the only thing I could imagine consuming. Living alone added an element of vulnerability to the situation. Friends were especially important at that time.

Nobody was answering that day, until I finally had someone come to my aid. As we talked, I began to wake up to the real crisis I was in. “I think I may be dying.”

A few hours later, I spoke to another friend who insisted that I call an ambulance. As I look back now, I wonder why I had to wait until someone told me that. It was a relief to hear the siren outside my window. I was admitted to the hospital later that day and remained there for close to a month.

It did not take long for my condition to be assessed. This was a teaching hospital, so I quickly had numerous interns and residents buzzing about me. I recall the earnest young trainee who sat by my bedside and explained my condition – kidney failure – likely caused by multiple myeloma. He was asking for my permission to go ahead with plasmapheresis and dialysis to stabilize me prior to chemotherapy.

“If you were my mother or sister or aunt, I would strongly encourage this course,” he added. Later on, I heard this phrase turn up on television medical shows and recognized it as something that must be taught in “How to Deliver Bad News 101.”

One of the recent Beacon weekly polls asked “What is the hardest thing about having multiple myeloma?” I relate to several of the options provided in the poll ^[1]:

1) Feeling ill, in pain, or constantly tired – This is how I felt for about 10 months during and beyond treatment and transplant.

2) Frequent medical appointments – They were once much more time-consuming, but I still have several each year.  Remaining so tied to the medical system makes me feel old.

3) Loss of (the illusion of) control of my life – This has been humbling. There was clearly no quick fix to be found. Surrendering to the entire situation was the only way out. I had not experienced much illness before that time. Even though my pre-myeloma days were in no way ideal, I had felt more-or-less in charge of the quality of my life.

4) Need to retire from my job – Retiring has proven to be more challenging and difficult than I imagined it would be. "Retiring" implies a pension. That was not my situation. I resigned from my job after 8 months because I was given a choice: come back now or we need to hire someone else. My intent was to have more time to feel better and also turn myself in a slightly different direction workwise. Sadly, the longer one is out of the workforce, the harder it is to be hired back, especially in times of a weak economy.

I’ve been in remission for 7 years. I do not worry too much about relapse, and at the same time, I expect it. Mostly, I feel that I escaped the worst-case scenario for which I prepared myself.

A recent Beacon article ^[2] showed that stem cell transplants may increase the risk of heart disease. As I read the information, I was reminded that the medication for high blood pressure that I have been on since my transplant means I am at risk of heart disease. This may be a more primary concern now than the myeloma.

Returning to my altar (storybook) anchors me in the present moment. Luck and change will have their way with me, but the myeloma continues to transform my relationship to living and dying. It transforms the way I live into the future. I can never retire the book. It’s a living reminder that I too am mortal.