So Much for Super Heroes: Moving On After a Clinical Trial

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Happy days sailing on English Bay with my sister and our dad.

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Summer weekends on Rompslomp at Centre Bay, Gambier Island.

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.

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When bald becomes beautiful. http://www.hennaheals.ca creates henna crowns for cancer patients who lose their hair.

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13 Responses to So Much for Super Heroes: Moving On After a Clinical Trial

  1. Ramy says:

    That was beautiful Rochelle. You have a gift, you write so well. Thank you for the wonderful pictures, especially the one of Dad!

    Liked by 1 person

  2. Lynne says:

    You have been in my thoughts so much for the last two days, Rochelle. Now I know why.
    Thank you for posting the photos…you look so much like your Dad! Very special.
    Sending love across the water….
    Lynne

    Liked by 1 person

  3. deb says:

    Ah, Rochelle, I so wish you had a different outcome from this trial. There have been so many ups and downs with people I’ve encountered — virtually and in person — but I don’t think any have articulated them as well. I think of you often and will continue to send good thoughts your way. I hope the chemo does you some good and allows you to enjoy family and friends more comfortably — without the parka. And, while you may not need the shampoo, don’t skimp on the sunscreen.

    Liked by 1 person

  4. Dean Cardno says:

    Rochelle – I am so disappointed that this treatment didn’t have a better outcome, after going through the Thai market experience. A lovely picture of your dad – thanks for posting this.

    Liked by 1 person

  5. brendim2013 says:

    Thanks for sharing and expending your reserve of energy. Sending positive thoughts from Los Angeles!

    Liked by 1 person

  6. Helen says:

    Rochelle, it was fantastic seeing you at our Reunion in May. You looked fabulous!!!!! This trial may not have had the end result that you were hoping for….but you are still kicking butt! You Go girl!!! We’re behind you 110%!!! Sending love and positive vibes!!

    Liked by 1 person

  7. Carla (Satte) Olsen says:

    Rochelle you have a lovely way with words, and you tell your story so beautifully. Yes, I know, it is not a beautiful story to tell, but one that needs to be told. I hope the chemo holds the disease at bay for awhile longer. Hopefully your time on the trial will help in the long haul for others who are fighting the battle of their lives. My thoughts are with you as you continue your journey.

    Liked by 1 person

  8. Susan says:

    As ever your words capture the difficulties and craziness of living with cancer. You are a survivor in more ways than one. Your handsome Dad would be proud. Very happy that your lungs are clear and your sense of humor has survived the deadly fatigue. Are you going to get the henna crown this time? It looks quite beautiful. oxo

    Liked by 1 person

  9. Chris Mann says:

    Sure appreciate your candid honesty about your journey. Darn sorry the experiment didn’t work and you’re back to chemo now. Loved the moment with you in the toiletries aisle realizing… oh, I don’t need shampoo at the moment…. so truthful – the pain, the resilience, the worry, the hope. Loved seeing a photo of your handsome dad too. I hold you close to my heart, every day – with or without blogs, with or without hair….

    Liked by 1 person

  10. My tears for you; will replace them with memories of our exciting days at EXPO 86. We did it!
    Young, smart, attractive, full of energy. Those were good times and I’m glad to have shared them with you, Gail B, John T and so many others.

    Liked by 1 person

  11. Pingback: CA 125 Drops 6,100 Points After First Taxol | Cancer Queen

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