A few months ago I wrote a blog about cancer being an a**hole. This should require no explanation or defense but for me, at that time, it was because monthly blood work showed my cancer numbers were elevated. That, after almost exactly three years of having no evidence of the bad protein in my blood that is the marker of myeloma, it appeared it was making a return.
I was shocked, angry, terrified …you name it. My doctor, on the other hand, was pretty matter-of-fact. He reminded me the bench is deep for myeloma now. There have been several new medicines launched since my diagnosis and he shared his confidence that we could get this number back to zero.
Before making any changes, we decided to run all available tests. I had a bone marrow biopsy (ouch!!), a pet scan and had my blood re-tested. Everything came back clean, even my M spike was back to zero. HUH? I was confused but relieved. Maybe that “epic lab fail” theory wasn’t too far-fetched after all… Aside from a return to the previous timing & dosage of my medicine (we had tinkered a bit since I had been doing so well), we continued as we had been. And I let my guard down, just a little.
This was a mistake.
This month, my blood tests show something is off, again. I had a sinus infection and had been on antibiotics so we ran the numbers one more time, as illness can sometimes have an impact. And unfortunately it confirmed my M spike had truly gone up. As it had been in February, it is S M A L L (.04 to be exact) but it is still something. It is no longer nothing.
Any cancer patient will tell you that one of the absolute worst parts of having or having had a cancer diagnosis is the waiting. Sounds crazy but it’s true. Those 48 to 72 hours between having your arm squeezed tightly by the tourniquet & watching those vials fill up and you getting the results are complete and utter torture. Every possible scenario runs through your mind and, no matter how long it’s been, you never truly feel safe.
So this time, when the phone rang and I saw it was my nurse, I knew it wasn’t good. They don’t usually call with the good news, at least not when you’re in a rhythm and a text with a confirmation of good news has been working for 30+ months and counting.
My stomach dropped as I got up from my chair on the sidelines of my daughter’s lacrosse game. Just seconds before my biggest worry had been if she would make another great save as the goalkeeper – and now I knew I had far more to worry about.
My nurse, on the other hand, didn’t seem too concerned. She was upset because she knows me well enough to know I would take the news hard but, as they had before, my team had a plan that could quickly and easily be implemented with the goal of getting me back to zero. She reminded me that .04 is TINY but the idea is you want to stop this in its track before it gets any more worrisome, which is why we wouldn’t take a “wait & see” approach. My team is prone to ACTION and, while that can be scary, it also feels right.
I had to quickly recover – I’m a mom after all. I met my husband as he walked towards the field and cried for a few minutes. Then wiped the tears from my face, stole the sunglasses off his and returned to my chair. My pity party would have to wait.
But as I sat in my chair I felt a range of emotions. Fear, sadness and, quite honestly, ANGER. WTF?? I am in the middle of this life-changing fundraising campaign with a goal to raise a LOT of money for cancer research. I am usually someone who believes in karma and, perhaps naively, believed this would have gotten me some good mojo. I obviously didn’t do it for that reason but seriously – this has to happen as I am still in the middle of this campaign??
But it has been a reminder of exactly why I am doing this. As I said when I had the scare in February, the reality is this happens to almost every myeloma patient at some point. Since there is STILL no cure, we will all always live with the knowledge these numbers will fluctuate and, in worst cases, there will be relapses.
The GOOD news is that this is not considered a relapse (my doctor called it a “biochemical abnormality”. Hell, no one likes being called abnormal but I’ll still take that any day of the week over “relapse”). I have been describing it like this – the medicine I take is like a dam and it’s job to hold the myeloma back. Right now I’ve sprung a TINY leak. We need to adjust the materials we are using for the dam to plug that leak before it becomes a huge gush of water.
So what does that “plug” look like? We will swap out my current oral medication (a drug called Revlimid) to its first cousin, a similar but different drug (called Pomalyst). The hope is my body will quickly respond to this and get that number back down to zero. As I have shared before, my current medicine has really taken a toll on my stomach. My doctor has suggested switching in the past and I’ve been really resistant, as I haven’t wanted to make any changes unless absolutely necessary. But that time is now – and might actually wind up being the best decision for me. My stubbornness may have prevented me from trying something that is more gentle and tolerable for me.
After a little time to digest this, I am feeling more at peace. We knew this would happen at some point – I just hoped it would be many more years down the road. I can’t tell you I haven’t laid in bed considering all the worse case scenarios (you know, like… what if this medicine doesn’t work? What if only works for a short time? What if this one makes me feel worse?). I was (kindly & politely) reminded that my overachieving tendencies, those that have me constantly striving to be that A+ cancer patient, can also bite me in the ass. Apparently I’m an overachieving worrier as well! I can ALWAYS find something to worry about. But things I never worried about – me getting cancer at 42, losing my dad…and then my mom – still happened. There is so much in life that we cannot control – and even if you’ve played out every worst case scenario – it doesn’t make it hurt less, doesn’t make the pain less raw.
I’ve written in the past about worrying, about how it doesn’t change anything. And I needed that reminder that it doesn’t help. It just makes you anxious ALL. THE. TIME. So the plan now is to take one day at a time.
With a few days to pause and reflect, I realize this reinforces the work I have been doing since my own diagnosis, and certainly over these past eight weeks, to raise money for research. Ten years ago, even five years ago, there were far fewer options available. When my doctor called to put my mind at ease, he rattled off the names of many different drugs that myeloma patients now have at their disposal. Game-changing immunotherapeutic treatment approaches such as CAR T therapy (which still has a ways to go to be considered possibly curative but it’s a GREAT start) weren’t even imaginable a decade ago.
And this is ONLY the case because research is being done to advance treatment options – and find a cure someday.
I promised in February when I had my first scare that I would double down on my commitment because I knew that one days my numbers could fluctuate…and the tests would be right. Sadly I didn’t think that would happen just two months later.
Many of you will ask what you can do to help. Step one is simple – please keep sending all your positive energy, love and support our way. We take every single bit and it truly, TRULY does make such a difference.
And if you want to help advance the science that will help me and other patients like me, please consider a donation to my campaign.
Now we will hit the reset button and start over. I don’t know what the weeks to come will bring but I am ready to do this again.