Feel Like A Number

So I spent the last month wondering – would the tumor marker numbers be up or down? For a month now I have veered wildly between the 2 extremes that I normally bounce between: “This is the beginning of the end – really this time” and “No way you haven’t beat this thing this time.”

For 10 or 12 years I never even knew what “my numbers” were, never even knew what the threshold was, never knew how “out of range” I was. It was not something my oncologist and I ever discussed beyond his usual “all the blood work looks good. Perfect.” Honestly, that worked for me. At a certain point (5 years? 7 years?) I became aware that I was typically out of range (high) and that my markers fluctuated up and down. At 10 years, of course, I was told my tumor markers (CA27,29 by the way – not that it means much to most of you, thank goodness) were spiking, continuing to go up and up, signaling a problem. Even after the diagnosis of metastatic breast cancer and subsequent treatment, I still didn’t have much interest in “my numbers,” instead trusting that my oncologist knew me well enough to know what I did and didn’t need to hear. And then he left me.

Now of course, my oncologists not only tell me my numbers, they discuss them and provide me with copies of the lab reports (so I know also that my white counts are low as well, not unsurprising of course given the treatments I’ve had over the years). And although I know they are not a definitive predictor of the presence or absence of disease (says so right on the report!), I can’t help but churn a multitude of scenarios out in my head when I hear one of the numbers: “43? Wasn’t it 45 last year when I was diagnosed? But it was 39 when I got the clean PET/CT and that’s out of range too. It must be because I just had the gall bladder surgery. It must be because I gained weight. It must be because it was early in the morning. It must be because of the hormone shots. It must be because I’m exercising again. It must be just one of those fluctuations. It must be cancer.”

At the doctor visit Monday, we once again went over the numbers. The tumor markers are down. All the other blood work looks good (except for that damn WBC, it’s amazing I haven’t really gotten sick this winter when it seems like everyone else around me has). Routine surveillance studies should be scheduled for March (6 months after the last ones – a typical follow up). No evidence of disease. Have a great day!

Oh, and by the way, I am somewhat of a “mini-celebrity” at Stony Brook Hospital – my patient number is the lowest they have ever come across apparently (they assign 7 digit numbers and mine is 4 zeros followed by my number, which is under 300). Whenever one of the nurses, or clerical people, or lab workers, or doctors see that number they are impressed (“You were one of the first patients at the hospital!”). I explain that I was a student at Stony Brook 30 years ago (Ouch…pun intended) while the hospital was being built and did have need of their services shortly after it opened. Hence – the low number.

Speaking of numbers – I can’t even count high enough to measure the blessings I have received, the prayers I’ve accumulated, the love I’ve been privileged to enjoy. My continuing gratitude to all my family, friends, neighbors, and colleagues for listening to my story.

Blessings and Love to All.