My Long and Winding Road to Diagnosis
I was born in May of 1970, the same month that the Beatles released “The Long and Winding Road.” 50 years later, as I reflect on the years preceding my diagnosis of multiple myeloma, it feels like it could have been my theme song. McCartney had once described the tune as, “a sad song because it’s all about the unattainable; the door you never quite reach.” In my case, that door was the diagnosis itself.1
The long and winding road that leads to your door
Will never disappear, I’ve seen that road before
It always leads me here
Lead me to your door
(Beatles, The Long and Winding Road, 1970, verse 1)
I had symptoms for years
I was tired for years and even lethargic at times. Even in my 40's, my body felt old. I was also getting sick often and recovering slowly. A sore hip had gradually turned into a noticeable limp.
These symptoms, problematic as they seemed, were easy to explain away. I had been a competitive long-distance runner for decades, so my hip was probably just wearing out from one too many 10K’s. And I was a divorced mom of 3 trying to manage a household, a stressful teaching job, and an unsuccessful dating life. Of course I was tired and worn down.
I looked everywhere for answers
I didn’t suspect anything too serious, but I desperately wanted to feel better. Initially, I sought the help of medical doctors. Why was I so tired, and, more importantly, what I could do about it? But each time, after blood test results were mostly in the normal range, doctors pointed to stress as the probable culprit and antidepressants as the likely fix.
Unsatisfied with the lack of answers and hopeful for a more natural solution, I consulted naturopaths, homeopaths, chiropractors, and massage therapists. I drove hours for visits, spent thousands of dollars, took handfuls of supplements, and tried all sorts of grain-free, alcohol-free, enjoyment-free diets.
Everything helped, but nothing cured, and I was frustrated. I had such high hopes and put in so much effort, only to feel like I was always coming back to more or less the same place. Maybe this road was longer and curvier than I had the stomach for.
I finally got a diagnosis
And then one day I tripped and fell. An x-ray and CT scan in the emergency room showed a fracture in my upper femur. When I saw the orthopedic surgeon later and told her long I’d been in pain, she promptly ordered an MRI.
The MRI ultimately answered what I had been searching for all of those years. Along with a fracture, it showed a bright, 9-cm lesion in my upper left femur. The diagnosis of multiple myeloma followed soon afterward.
Finally, I had an answer, and it made perfect sense. The fatigue, the frequent illnesses, and hip pain were all directly caused by the disease which had been allowed to progress unchecked for years. But what didn’t make sense is why it had taken so very long to get a diagnosis.
I found out later that I was not alone. For many, the symptoms are vague and seemingly caused by other ailments. And for some, there are no symptoms at all until the disease has already reached an advanced stage.2
It may be a long and winding road ahead
The wild and windy night that the rain washed away
Has left a pool of tears, crying for the day
Why leave me standing here?
Let me know the way
(Beatles, The Long and Winding Road, 1970, verse 2)
I’m grateful to have arrived at the door of diagnosis and to be diagnosed when I was, but I’m not sure the road ahead gets a whole lot straighter. With unpleasant side effects, threat of relapse, risk of secondary cancers, and non-secretory tumors, myeloma can feel like a marathon with steep hills and sharp curves - even while in remission.
At times I wish I knew the best way forward and could see some of the roads ahead. Other times I wish the road was a little (or a lot) straighter. But I'm learning to embrace the path I'm on. The long and winding road has definitely made me a better driver.
What song would you use as a theme song for your diagnosis? Please leave it in the comments below.
What type of blood cancer are you or your loved one diagnosed with?