I’m not exactly sure when it happened.   Maybe it changed two or three years ago. 

Regardless of when, the result is clear: I can’t remember what it’s like to not have multiple myeloma.

I’m not a poet – I haven’t written any poetry since high school.  But I would like to give it a try this month:

Do you remember when you didn’t have to live with pain
Aching bones, twitching nerves, and needles
Every day, every week, again and again
Maintenance therapy that never ends
Chemotherapy that changes with the latest trends
Anxiously waiting for results from your tests:
Anemic, neutropenic, paraprotein gone wild
A rod in your leg or concrete in your spine
Or kidneys not working right
Not getting up to go in the night
The doctors say I won’t live long.
I hope they’re wrong!

I watch shows on HGTV about moving to Hawaii or Alaska, and I think, “Are these people crazy?  There isn’t a well-known myeloma specialist in either state!”

When I was in my 30s, my wife Pattie and I both had Alaska teaching licenses.  Owning four rescued sled dogs, our plan was to move north from Wisconsin and do it right!  We settled on the northwoods in far nor­thern Wisconsin and ended up with four more rescues – and his and her dog sleds.

Turns out it was a good thing we stayed in state: Pattie was diagnosed with ovarian cancer a few years later.  We were a long two hours away from an excellent cancer center.  But had we been in an isolated village in Alaska, things would have been far more difficult and complicated.

Pattie’s cancer dented our innocence, our “We’re young and indestructible” adventurous spirits.  But myeloma finished it off.

We lived in a home we loved on a five-acre hilltop – yet right in town — surrounded by beautiful wild flowers, where we could watch trees grow that we’d planted years before.  It was a big home, with lots of panoramic windows. 

Yet we could see how the various things that made it special could be drawbacks, too.  Our driveway was long and icy in the winter.  What if I slipped and fell?  The windows tended to be drafty, making the house a nightmare to heat.  Our heated, tuck-under garage was awesome.  But our main living area was upstairs; not a great idea when I was so sick that I needed to rest after taking each step up.  And the roof would need replacing soon, too.

We lived within walking distance to the beautiful St. Croix River.  But St. Croix Falls was too far from Mayo Clinic.  Doctors had told me I would only be around for three or four years – and that I probably couldn’t work.  How would we pay for the heat and property taxes?

Had I known I would live this long, we would have never moved.  But based on the information I had at the time, we relocated to Florida and purchased a far less expensive one-level home.

Myeloma has changed my life in countless ways – some good, others not.  It has disrupted and changed what I do and when I do it.  I’m living in a different place, doing different work; eating, reading, and thinking in different ways.

The other day, someone rhetorically asked me, “What would you do if you were cured?  How would you feel?”  After reflecting upon their questions for a while, I would have to respond, “I don’t know.”  I really don’t!  Multiple myeloma is such a big part of my life.  I can’t imagine living without it.

That may be the most tragic loss of all.

Feel good and keep smiling!