Earlier this week, I shared that my husband and I were celebrating a big anniversary. We have been married for 13 years. For our 10th anniversary, instead of the traditional presents of tin or aluminum, we were gifted with a cancer diagnosis for me that rocked our world. My husband was incredible in those days, weeks and months and I am thrilled to say that, three years later, we are stronger than ever. I am stronger than ever.
While reaching that anniversary was hugely important, today is another big anniversary for me. Two years ago today I received the first “zero” that stuck. For those of you who follow my story, you know “zeros” are how I refer to having a negative M spike, an important test for Myeloma patients.
What is an M spike, you ask?
(WARNING ..lots of science-y stuff ahead…)
In multiple myeloma, the M protein comes from a great excess of plasma cells. Ordinarily, plasma cells will produce a wide range of antibodies. In the normal or healthy people, their plasma cells produce a wide array of different antibodies—so-called polyclonal antibodies, or polyclonal immunoglobulins.
When plasma cells become cancerous, often there is a single, very bad cell that has given rise to many identical minions. All of the minions are clones of the same cell, and they make only the same monoclonal proteins. Since there are a lot of plasma cells, multiplying abnormally, they make a lot of this monoclonal protein. The abundance, or spike, in the volume of just one protein, is closely monitored in patients with Myeloma.
Simply said, the M spike measures if I have these bad, cancerous proteins multiplying in my blood.
No M Spike = no bad proteins = no cancer-y proteins = REMISSION
Can we get a WOO HOO, people?!?
I will never forget the road it took me to get here. After being diagnosed in October 2014, I had three months of induction chemo, followed by a Stem Cell Transplant (SCT) in February 2015. These procedures are not for the faint of heart. This transplant includes weeks of tests to ensure your body can handle the deadly chemo that will be given to you. That’s just how bad the chemo is.
I spent several days with a neck catheter extracting healthy cells from my body, which would be reinfused to counteract the poison they gave me. My immune system was decimated, my hair became a distant memory. I was prepared for all of this. What I wasn’t prepared for was it taking more than a year to get to remission.
I remember SO vividly when my amazing nurse called to tell me that first time my M spike was negative. I was en route to a girls’ overnight trip at the beach with two of my dearest friends. We screamed, we cried, we celebrated. And I felt confident that this was it – remission was mine.
However, this joy was short lived. In the months that followed my bloodwork was erratic, bouncing up and down. Each time, it inched up I would cry. I still recall the words of my nurse, reminding me “this is a marathon, not a sprint” and I always have to look at the bigger picture. That my health is more than month’s test.
But I’m stubborn. And I’m an overachiever. Did I mention stubborn??
Psychologically I knew what I needed was to get – and KEEP – this number down. Get it back to zero. Which is why every time it fluctuated during that first year it was like a knife through my heart.
Anyone who has had to wait for test results will tell you that those feel like the longest hours of your life. The 48 to 72 hours between when the tourniquet is tightly tied around your arm while the tubes slowly fill and when the results actually become available are complete agony. Each month is filled with hope, fear, optimism and anguish. It never EVER gets easier.
But then one month it happened. The test showed those nasty proteins couldn’t be found. And then again the next month. And again. We started counting those zeros and counting…one become two…two became four…four became six…and the next thing I knew I was up to double-digit zeros.
Getting and waiting for those tests are still agony. But now each month I am lucky enough to confirm that I am still healthy. I call my husband at work and just shout random numbers at him “”8!!” “15!!” “24!!”
I text my sister, my sister-in-law. I group text my high school posse and my college besties. And when my mom was still here, I would call her immediately and she would cry, telling me how proud she was I “failed” my test by getting a zero.
This part? This ability to celebrate my health every month? This never EVER gets old. I cry each and every time. And the heartache from not being able to tell my mom is just one part of that.
It is my opportunity to reflect with gratitude on how far I’ve come. To pause for a few moments and appreciate my health and remind myself to not take it for granted.
Today, two years after that first zero, I am lucky enough to say I have achieved – and am maintaining – a Stringent Complete Response. This is as good as it gets for a Myeloma patient. Patients who are able to achieve stringent complete response have the best long-term outcomes. I also recently read research indicating that “multiple myeloma patients who respond more gradually to their initial treatment may have better overall survival”. Of course it’s easy to say now but it sounds like a silver lining to me!
Many Myeloma patients celebrate their SCT date as a new birthday. But this day – April 26th – has now become another important milestone for me. It’s the day the yo-yoing ended. The day my blood stopped betraying me and finally settled down.
I do understand Myeloma is a tricky bastard, working hard to outthink, outrun, outsmart any medicines thrown its way. One month I could find my medicine isn’t as effective and my numbers are creeping up.
I won’t lie…initially I would be DEVASTATED. But things are different than they were just a few years ago. There are SO many more treatment options for Myeloma. IF I ever lose my zero, I know science is on my side. I know that I have an incredible team of doctors and nurses who will come up with a new plan. I also truly, deeply believe a cure is on the horizon.
By the way, in case you’re wondering, I’m at 26 zeros and counting …
Until next time,