This Crazy Disease Doesn’t Follow the Rules

This is me last month, three days post-chemo, at The Underwear Affair. Our team walked 5k to celebrate raising $13,000 for The BC Cancer Foundation.

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.
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16 Responses to This Crazy Disease Doesn’t Follow the Rules

  1. Mary Louise Doherty says:

    Rochelle, you certainly display an exceptional ability in relating living with this incredible disease and its shape-shifting capabilities.

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  2. Kate says:

    How frustrating that the goal posts keep getting moved on you!

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  3. Susan says:

    There are no words. Hug!!

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  4. Dean Cardno says:

    Wow, Rochelle. Hard enough to live with the disease, but then to deal with all the fear, uncertainty, and doubt… you are tougher than I am – and I know you will beat this! My thoughts are with you.

    Dean

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  5. There is something harsh when we get kicked out of a clinical trial. And I have learned the hard way to calculate total tumor load so that the new growths don’t throw me for too much of a loop. For me, unless the tumor marker is at 7 or less, I have active cancer regardless of what a pet or ct scan shows. Crazy but true, for me.

    Good luck w.doxil. Won’t hurt to try. (Well, everything we do does hurt to try…but). If you go back the taxol route consider weekly low dose. I did it for 9 months and LOVED it.it was so easy I added in fasting. Hair thins slowly and was into obvious after month six, then a hat was good. But the grow back was so much easier!!!!!!! And my cancer lòved it after a long few years of poor reponses to chemo.

    Xo
    warmly, marcy
    http://livinglydying.com/

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  6. Lynne says:

    The frustration and loss of control is cruel…my love goes to you, Rochelle.
    xoxo
    Lynne

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  7. barbara whiting says:

    I so appreciate you having the grace and the courage to lift that heavy dark curtain in order to allow the rest of us to have a look into your “other world” in which you are waging such an incredible crusade.

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    • rvanhalm says:

      An incredible crusade… well, Barbie, that’s one way to put it. I am feeling well and heading to the beach this afternoon for what might be one of the last swims at Jericho for the season. Thanks for reading.

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  8. Jacky says:

    well Rochelle, for years I have had something that shows up in my liver, and another thing in one lung. The answer was they didn’t know what it was, but it was small, and could be a harmless cyst. and they would only know by whether it got bigger. So years later they are both still there, but haven’t changed in size. Also it was noted on another CT scan that I had cysts in my kidneys, but they were probably harmless and are very common. The wonders if CT scans show us all kinds of things we might not want to know if we didn’t have cancer.
    I hope what you have is scar tissue or something like that. I think its a shame they can’t remove them with surgery instead of proposing more chemo, perhaps it would be easy to do that depending where it it? Of course I don’t really know much. But best wishes.

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  9. rvanhalm says:

    Thanks for reading Jacky. There may be surgery in my future… I see North America’s leading liver expert in September!

    Like

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