I know the world isn’t black and white. Colour and especially the greys gives us variety and infinite nuance.
Yet I’ve navigated my 50+ years believing that if I follow the rules, I will succeed. After nearly four years of dancing with this disease, I still believe that if I follow the “rules” as set out by the oncologists, naturopath, integrative health experts, exercise coaches, etc., I will live longer, happier, healthier… well you get the picture. I’m hoping not to die sooner than I have to.
Following the rules, I spent 100 days on chemo this year, March through July. My CA-125* dropped to single digits — normal levels — by May. Yet last week’s CT scan showed the tumours in my lungs and liver were still there. Was the CA-125 lying? Was it no longer following the rules?
Some rules are still working. Chemo shrank the tumours in my lungs to half the size they were in March. I was grateful, the magic worked again.
But the tumour in my liver was 1 cm larger even though it got as much chemo as the ones in my lungs. It means I’m no longer eligible for the Niraparib clinical trial, the targeted drug that proposed longer progression-free survival with good quality of life.
So how does this work, I asked the oncologist. I did chemo and suffered fatigue and nausea. (I did my penance!) My CA-125 went down to normal levels, which used to mean my cancer was inactive. Except I still have tumours in my lungs and liver.
These tumours might have a different genetic aspect, my oncologist explained, that need a different chemo drug to kill it or slow its growth. And they might not be expressing what the CA-125 detects. New rules.
So what’s ahead? Nothing for now. Watch and wait or as I prefer to think of it: play, swim, travel, drink wine, enjoy my family and friends until I can’t stand it any longer.
And then we go to the next chemo drug — my fifth. I have a choice: caelyx (or doxil, as it’s called in the US). Some people like it because it’s fast to administer — only 30 minutes once a month by intravenous. The tradeoff is lesions or blisters that may attack your skin or inside your mouth. The other choice is taxol, which I’ve had before. Taxol means 3 hours in the chair several times a month. And it makes your hair fall out. And there’s nausea.
New rules? No rules? This is what they call living with cancer.*CA-125 (cancer antigen 125) is a blood tumour marker that tracks 79% of all ovarian cancers. It can also be elevated for other cancers as well as more benign conditions. It’s not perfect but it’s the one tracking device most of us count on throughout chemo and during remission. Five hours after the blood test at our local lab we sit in front of our computers pressing refresh, refresh, refresh until we get the new number. The normal threshold is 32 or 35 depending on which scale is used. For some women, a drop of 5 points can bring celebration. Others hope for a drop of 500. Whether we are dealing with 60 or 600 or even 6,000, having a tracking device helps us know whether we are getting better or heading into chemo failure.