Today was just an ordinary Fall day. It was unseasonably warm for October and I spent the day running a bunch of errands with my kids after virtual school (okay, maybe that part isn’t ordinary), watched my son’s hockey game (on my laptop…okay again, not typical) and had a dinner date with my youngest daughter.
But throughout the day, lurking in the back of my mind, was the knowledge that today was THE day. The day that my life changed. The day that a bone marrow biopsy confirmed the suspicions of an ER doctor who had the good instincts to realize that high calcium + anemia = a possible cancer diagnosis.
If you know my story a little bit, you know that I wasn’t actually awake when the diagnosis came back. I was unconscious after going into the hospital five days earlier with an eye infection. My husband was the one who had to hear the news and then, three days later when I finally woke up, be the one to tell me that I had cancer — and an incurable cancer – at the age of 42.
Even though I didn’t find out that day, October 23rd, that’s the day I think of as my “cancerversary”. And today I celebrate my SIXTH cancerversary. Last year, on the fifth anniversary, I had a lot to say about how I felt — so I’ll try not to repeat it all. You can read it for yourself here. At the time, it felt like a big deal – and it was. But today, in all its ordinariness, feels bigger.
If you google “cancer survival rates” what most generally comes up are 5-year survival rates. The reason for that is, for most cancer patients, the five-year mark is traditionally seen as a benchmark for when they could exhale. When they might be able to believe the chance of their cancer returning is no longer likely.
Unfortunately that’s not true of multiple myeloma. It’s not the type of cancer that you can treat with radiation or cut out and then watch and wait. You can’t complete your treatment, wait five years, get the “all clear” and then stop worrying ALL the time that the other shoe is going to drop. Most all patients with myeloma receive some type of treatment…forever.
All that said, there are still reasons for me to feel optimistic. According to the Multiple Myeloma Research Foundation (MMRF), “from 2010 to 2016, the most recent statistics available, five-year relative survival for multiple myeloma was 53.9%, meaning that approximately 54 of 100 people with multiple myeloma were living five years following their diagnosis.
To put that statistic into perspective, the five-year relative survival rate for multiple myeloma in 1998, the year the MMRF was founded, was just 34.6%. The trend for multiple myeloma survival is improving….and the approval of new, effective therapies to treat myeloma. Twelve new multiple myeloma drugs have been approved by the Food and Drug Administration (FDA) in the past 15 years, and many more are in clinical trials.”
And, according to The Leukemia & Lymphoma Society (LLS), in 2014 the 5-year survival rate was 75.7% for people with myeloma who were younger than 45 years at diagnosis. This is GREAT news!
I have been one of the lucky ones with multiple myeloma – but not without my challenges. When the abnormalities in my bloodwork came back at the end of last year, Brian and I met with my oncologist. He gently reminded us of the genetic testing that had been done when I was diagnosed, putting me in the highest risk category for Multiple Myeloma. And because of those abnormalities, the doctor told me doing this well at the 5+ year mark “exceeds all expectations and predictions”.
THIS is why six years means so much to me. Obviously each year is a victory over this cancer that has completely upended our lives. Each year past year five feels like I am defying the odds – and I know that is someting to feel gratitude about.
But don’t get me wrong. I am ANGRY that I now, after all this time, I had to start a new oral chemo pill; one that is giving me side effects I never had over the last several years, like nausea. But I am also GRATEFUL that new medicines are available to me – with many more in the pipeline.
I am EXHAUSTED by Covid, not only because of the effects it has had on all of our lives, but the real fear it presents for me and my family. Myeloma has already wreaked havoc on my immune system – add to that actively receiving chemotherapy — and at the ripe young age of 48, I am considered “high risk”. But I am also LUCKY that my family and loved ones have remained safe and healthy, which isn’t true for so many people.
Despite all that six years means, I didn’t do anything special today to celebrate this milestone. Last weekend, we did have our own version of Light the Night, an important annual event for our family. Since becoming involved with LLS, we have raised close to $210,000 for cancer research. And though Covid robbed us of our usual festivities, which always nicely coincide with my cancerversary, we still found a way to participate responsibly. We watched the ceremony outside, on a screen, with a few close friends & loved ones.
And I bawled as raised my white lantern, the one reserved for survivors, as I was surrounded by my children and their friends. I continued crying as I walked through our neighborhood, knowing my family and I were surrounded by people who love us and know how much this night means to me.
That night kicked off an emotional week for me. This time of year always does that to me. But oddly today was just like any other day. I still had to walk the dog, referee the kids fighting and tidy up the house. Writing this blog is the only real acknowledgement of what this day was.
As I look back at the day, I realize the best part of it was its simplicity. It was just a regular day, compromised of nothing particularly special.
Today was just a typical day – and I am lucky enough to be here to enjoy it.
Until next time, #gameon….