Margit Novack: Who gets to Live Like This?
I saw my internist’s number appear on my cell phone.
“There is an unusual result in your routine bloodwork. I think you should see a hematologist.”
“Why? What do the results suggest?” I asked.
“You might have multiple myeloma.”
Fortunately, I did not have Multiple Myeloma — I had MGUS — and the hematologist with whom I began my now fifteen-year relationship is kind, patient, humble and maniacally responsive to emails I send. He told me that progression to WM was possible and even likely, and that good treatments were available. He told me not to worry, and I didn’t. I was watch and wait.
I was diagnosed with breast cancer decades earlier, at 39, when not being alive to raise my children felt like a much more present danger. I had double mastectomies with reconstruction and a complete hysterectomy a year later, when ovarian tumors turned out to be non-malignant. I briefly readjusted my priorities and recognized how grateful and lucky I was, but as years went by, the threat of cancer, and along with it, my mindfulness waned.
My numbers trailed slowly but consistently upward, and my husband and I decided to join a local support group. Bill brought his IPAD along, to take notes. We sat in a circle and people told their stories, many of them “watch and wait,” I saw Bill write “watching weight.”
“They’re not watching their weight,” I whispered. “They’re watch and wait.”
“No,” said Bill. “I looked up symptoms of Waldenstrom’s and weight loss is one of them.”
Spouses make meetings more interesting.
A dumb fall in 2018 lead to an MRI of my head and a finding that my brain was fine, but bone in my skull showed abnormalities. “Has anyone told you that you might have some form of blood cancer?” the doctor asked? And that’s what lead to my first bone marrow biopsy, confirming what we now expected to be the case: I have Waldenstrom’s. I was still watch and wait, so not much changed. Busy with a rewarding and engrossing career as a small business owner, mindfulness and WM were far from my mind.
In 2018, I achieved every business owner’s dream: I was approached about selling my business and the new owners wanted my continued involvement. We bought a shore home that we visited on weekends. Life was perfect. Then suddenly, it was awful. My husband had a severe heart attack. It was unclear if he would live, or what our quality of life would be. Our fear brought back gratitude and the importance of living in the moment. But as was the case before, once the threat was removed, our mindfulness left with it. After surgery and a remarkable recovery, we both launched back into work, absent our hard-earned perspective.
It took Covid and our departure from work life, to reawaken our mindfulness and realign our priorities. We are both healthy now. Why were we putting so much energy and time into work, we wonder, and not into each other? In the past, we saw clearly only in the midst of crisis. Now, we see clearly in the midst of good fortune. WM is present, but on the back burner. I’m grateful to have a disease that is indolent, and manageable even if it becomes more active.
For the most part, we continue to hunker down at the shore house. Bill consults part time, and I navigate the road of retirement, looking for more purpose but thriving nonetheless. I wrote a book: Squint: Re-visioning the Second Half of Life, formed a Mitzvah Team of like-minded friends committed to making a difference, and am actually doing the exercise I promised myself I would do “when I retire some day.” Life is good, and we think about how lucky we are often. We begin each morning with three dogs on our bed, staring at water and listening to Jimmy Buffet.
There are waves outside my window
There are airplanes in the sky
There are ships on the horizon
And a beach always nearby
Fish tacos on the table, no surfer can resist
How did I get this lucky? Tell me who gets to live like this?