Twenty-six years ago I was a brand new mother with an infant son. New life entered the world as my parents received a stunning diagnosis: my strong, tall, lean, sailor father had cancer. Only two months before that phone call he had climbed to the top of the mast in a bosun’s chair to untangle halyards. As usual, he did what men half his age wouldn’t do.
He was hospitalized that fall as we tried to understand why he wasn’t getting better. I was visiting with baby on my lap. “Would you like to hold your grandson?” I asked. He said no and until now, I didn’t really understand why. “Wait until I’m better,” said my dad. “I’ll hold him then.”
But my dad didn’t get any better and by the time Baxter was six months old, my dad was gone.
I understand now. I’m feeling that way now about writing this story. I feel like waiting until I’m better to write a healthier, happier story. My dad never held his grandson but I’ll carry on.
I’m off the clinical trial
I was pretty positive I’d have some good life on that trial (Ariel2 with Rucaparib) when I started at the end of April 2015. It was surprisingly tough going and a rotten drug to be on during Vancouver’s incredible summer. Sunscreen with SPF60, long sleeves, hat, and a tree for shade were not enough to prevent my hands from burning and blistering. My internal temperature skyrocketed and I perspired as if I was shopping in a Thai market wearing a parka. The fatigue was worse than ever. There was the usual slight nausea that drugs took care of and a new metallic taste in my mouth.
After the first month on this new super drug, I was excited to see what it did to my CA 125. Alas, it jumped from 3,300 before the trial started to… 7,200 in a month. The doctors did not seem surprised. “It sometimes takes a while to see a reduction in the tumour marker,” they said. The phenomenal fatigue continued and the second month, the CA 125 jumped again to 9,100.
By the third month I was on a reduced dose and the last week, I was off the drug completely to bring me back from the sleeping death of fatigue. “How do you feel now?” asked the oncologist. “Not much different,” I said. “Well if it had been the drug causing your fatigue, you would be feeling better by now,” he said. “I’m afraid it’s not the drug, it’s the cancer.”
Perhaps it was fortunate that I was seeing the senior oncologist instead of my usual doctor who is younger and reads CT scans a little more positively. “Stable disease,” she had said. Stable is good, I wrote, at this stage of the disease.
The senior oncologist read the same CT scan and saw my lungs were clear of tumours but my liver — shot with tumours, two so large they joined together. (Siamese Tumour?) “This drug is not doing it for you,” he said. So I’m off the trial and back on chemo.
Hair today, gone tomorrow
Two weeks ago I started Taxol, a drug I’ve had before, almost five years ago. I remember my hair started falling out on the tenth day after treatment. Was it going to be the same this time? Sure enough, on the tenth day I felt that prickle in my scalp as if pins were pressed into my hair follicles. I reached up and grabbed a handful and gently pulled… and there it came. My daughter obliged me once again by shaving my head.
The bald look takes some getting used to… even if it’s the third time with this hair style. I was shopping for groceries this week and stopped in the toiletry aisle. Instead of the usual stuff, I thought I’d get something nice smelling for a change. Coconut or fruity or flowery? But as I reached for the bottle, I suddenly realized a new shampoo could wait another day.