Monday, March 3, 2014

Amanda's cancer has returned, just months after treatment

It's been two and a half months since the last update on this blog, and I was hoping to write one soon with lots of good news.

I was going to write about our recent trip to Jamaica, where we got to go snorkeling, bake in the sun and meet nice people from around Canada and the USA.

I was going to write about how Gordon is now 11 months old and exceeding all our hopes. He's a little dynamo who's not that little -- out of 100 babies his age, no normal one would be bigger. He's spectacular and we love him to bits.


I was going to write about putting the finishing touches on the Twin City Wrestling TV show that I've been working on for the past several months. It's just about ready to be sent in to the broadcaster, and it looks great.

I was going to write about the Canadian Cancer Society using our story in a very moving fundraising letter for their winter campaign in Nova Scotia.

I was going to write about Amanda's trip to Toronto to learn about how Prince Margaret Hospital does their cancer-survivor follow-up care, and how she had a nagging suspicion that her cancer had come back, even though a CT scan showed nothing.

Sadly, that last one didn't come to pass.

The cancer is back, and that's very bad news.

To recap quickly, ovarian cancer is not just cancer in the ovaries. It's a cancer that starts in ovarian tissue, but it tends to spread elsewhere. In Amanda's case, when it was discovered during her c-section delivery in April 2013, it had already spread to her omentum and a few other places in her abdomen. She had several rounds of chemotherapy with carboplatin and palictaxel (Taxol), then a major surgery to take out the tumours, her uterus, ovaries and tubes. There was a bit of tumor on the underside of her diaphragm that the doctors could not safely remove. She was supposed to have had a series of intraperitoneal (IP) chemotherapy treatments, but something was botched and that had to be abandoned. Amanda had several more rounds of carbo-taxol, many hospital stays, many setbacks, and a long, difficult, painful summer and autumn. She's since suffered from joint pain and anemia after the chemo.

Otherwise, though, it seemed like things were going well. Gordon has been a delight. We'd found a routine. Amanda and the baby were getting out to activities like Kindermusik and mom-and-tot swimming. We had a vacation. We were starting to imagine a future that, though limited, could include breaks from thinking about cancer. Life was looking good, but as I wrote in the last update, she was concerned about follow-up care.

Connections at Princess Margaret's Hospital cancer centre in Toronto arranged for Amanda to see the head doctor there to talk about how they handle ovarian cancer follow-up. The appointment was made, and Amanda prepared to fly to Ontario with Gordon and visit family while there. But the night before her flight, a Friday evening at 5:30pm, the hospital called and said the doctor was not there. He was out of the country for three weeks and someone had forgotten to tell us.

She went anyway. They found a doctor to meet with her and she had a very informative and settling discussion about what ongoing monitoring and treatment options look like in Ontario. It's different than here in Nova Scotia, which might be surprising to some. If you think Canadian health care is the same across Canada, well, it's not. Different jurisdictions have different protocols and different options available. Each has their reasons, I'm sure.

Amanda had a feeling something was wrong. She felt "twinges" of pain, pulling, burning, whatever. Word of "nodules" that had been seen on post-surgery CT scans in late 2013 troubled her, and she felt symptoms that troubled her. But entirely aside from that, she had a feeling. Her doom sensor is pretty sharp.

She pushed for some investigation at the Nova Scotia Cancer Centre.

They did a CA125 test, which looks at a specific blood marker that's often a helpful indicator of active ovarian cancer. Her past test results were not especially useful -- they were higher than normal, but not as high as they could have been with as much cancer as she had back then. This time, the result was low: 6. Really, 6 is a low reading. A sigh of relief. But a CT scan would still be used to be double-sure.

Amanda went in for the scan two days after we got back from our one-week trip to Jewel Paradise Cove (which used to be Hedonism III, which is a whole other story) and we waited for the results two days later.

I was not expecting anything bad. At worst, I thought the doctor would say the radiologist saw some vague densities here and here, which could be scar tissue, which could be nothing, which are within the margin of error for measurement, which means nothing, but we'll keep an eye on you every few months.

Instead, the doctor said the cancer is back.

Several tumours, the largest being about 2.2 cm. One near the top of her stomach. One near her splenic flexure (the last turn of the large bowel). Others in other places, I'm not sure exactly where. Her liver looks weird on one side and one of her kidneys is swollen.

Ovarian cancer tends to come back. We knew this. But we thought it might come back years later. YEARS later.

When ovarian cancer comes back within the first six months after treatment, it's worse. It means that it is not cured, won't be cured, can't be cured. It means it's resistant to the main agent used to fight it, which is platinum. Cancer that returns within the first six months is considered platinum-resistant. Throwing more platinum at it won't work very well, and is toxic to the body anyway.

The doctor figures Amanda has another year, maybe two, left to live.

We've been given three options from the oncologist at the NS Cancer Centre: 1) Do nothing, for now. Wait until the cancer grows big enough to cause disruptive symptoms, then start treatment. That's an option because the treatment itself is an ordeal and significantly diminishes quality of life. We've been told that treating early doesn't make you live any longer. 2) Join a clinical trial currently under way involving an expensive drug (Caelyx, pegylated liposomal doxorubicin hydrochloride) that's hard to get but has shown some promise, but be aware that you might not get the 'good' arm of the trial. 3) Treatment with a different drug, gemcitabine.

Another option is to check with Princess Margaret in Toronto and see what they have available. We know they do more clinical trials and work with more experimental things.

So, Amanda went through all that hell last year, unable to simply enjoy being a new mom, and the cancer's already back. It wasn't supposed to be like this. This is awful. This is so unfair. We can hardly even remember what Gordon's first months were like, because we spent so much time in hospital and in recovery and chemo and ... those months are gone. We went through it thinking that it was going to be worth it because it would give us more time with him in the years to come.


Gordon's going to lose his mom. I'm going to lose my wife. Barb and Wendall are going to lose their daughter. Amy and Ruth are going to lose their sister. Amanda's going to lose everything. This is just horrible. This is so horrible. This is more than any of us can comprehend right now. We're all stunned and devastated.

What can anyone say? I don't know! I don't know what to say. I don't know what to do. I can't even process this.

We've been planning, not so secretly, to move to Ontario some time this year. Amanda's sisters live in London. My parents and sister live not so far away in Stratford. Amanda's said all along that it's important that Gordon be brought up around family, since she knew she'd probably die sooner than most. I honestly did not think it would be soon like this.

We love Nova Scotia. We moved here in 2005 to launch News95.7. The station has been through some big changes. So have we. We had our difficulties. We married by the Northwest Arm in front of good friends. We bought a house we love. We started a family. We became part of the community. We were proud to say we were Nova Scotians now. We fought cancer. We've loved, laughed and cried a lot. We don't want to go. But going is the right thing to do for Gordon.

I don't know when we'll move. The whole thing scares me. Where will I work? I'd like to stay with Rogers -- I've been with the company for 20 years and they've been good to me, but they don't have a big radio presence in London. There's a Rogers news-talk station in Kitchener. Maybe I could be a professor in radio, journalism or even TV at Fanshawe College? That would be good, but I don't imagine those jobs are easy to come by.

These are thoughts we're unable to properly consider right now. Right now we're bowled over by loss.

Loss of the idea that life could be normal for a little bit. Loss of hope that Amanda could be free of pain for at least a little while. Loss of the dream of growing old together and raising this perfect little boy.

It wasn't supposed to be this way. She and I have both faced challenges in our lives, and for a brief shining moment it felt like we both had everything we'd always wanted. Now the future is frighteningly uncertain.

Friends and even strangers, I know, will be wondering what they can do or how they can help or even what to say. I don't know.

Amanda wants me to read Tuesdays With Morrie. She said it changed her life when her dad died of brain cancer some years ago, and she says it lays out how she wants to live the end of her life, and how she'd like others to be, too. I got through part of the audiobook version as we lounged on the beach in Jamaica, but about 40 minutes in, it was just too sad. Too sad to imagine Amanda one day not being with me. Just days ago, I thought that might be five, ten years from now.

She says she doesn't want people to have to tiptoe around her or avoid her or hold back what they feel. She wants to be real about this. As you've seen over the past year, I've been doing the same thing.

I'll keep you up to date. Thanks to everyone who's been asking how things are. Big thanks to Barb & Wendall who took care of Gordon while we were in Jamaica and stayed an extra week afterward. It was good to have them around when this blew up, although I know it's been very hard for them, too.

20 comments:

  1. Oh Scott. I have no words beyond sorry, so very sorry. - Joanne Cook

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  2. I hope Amanda and yourself can get every ounce of joy out of what is left. There's nothing anyone can say that will make it easier, but I hope you have some joyous moments with your baby over the coming time so you can remember them forever.

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  3. I am dying inside, just imagining the pain and frustration. Sorry sounds weak. I can't say it because it doesn't help. It's all so unfair. Oh Scott...

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  4. I am so very deeply sorry for this news and for what you both must be feeling right now. I'll certainly keep my eat to the twitter ground for support & opportunity in Toronto. The PM has some good things happening. ~Catherine

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  5. I only "know" you both through twitter, but Ive been hoping against all odds that Amanda would beat this thing. My heart is broken for all of you. Cherish every moment sounds cliche, but try. Many hugs to all of you.

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  6. Me too Scott, my heart goes out to you, Amanda, little Gordon and the whole family

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  7. Scott. This is the worst news. Just a couple of months ago I saw Amanda and little Gordon (so sweet in the grocery cart) at Walmart. We had a lovely chat. She was so positive....things appeared to be going well. Amanda looked radiant and so happy and I could see AND feel the love she has for Gordon. I don't know what to say to you both. I feel ripped off...your friends are being ripped off. It's not fair. You're both such giving people and now...... If there's anything I can do, please call me: 446-4313 (h) or 452-1351 (c). I have a lot of time on my hands and I'd love to help you get through this -- even the tiniest little thing -- just call!! I'm thinking of you all and praying that maybe that clinical drug can help -- that Amanda gets the "good" arm of the trial. I'm devastated. Sending love and healing energy. Take care...and call!!

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  8. I am a friend of Amy's and my thoughts are with you all. I did read and own Tuesday's with Morrie and it is a great book. Spend every moment together and don't miss a minute. Life really is to short.

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  9. Scott,
    I can't begin to imagine the agony of learning this news. My thoughts and prayers are with you, Amanda and Gordon. Let Kevin and I know if there is anything we can do when you're back in Ontario.
    Charlene and Kevin

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  10. Mindy in ColoradoMarch 3, 2014 at 3:36 PM

    You do not know me but I want you to know how truly sorry I am. I have helped my own Mother go through this battle with Ovarian Cancer and know far more than I ever hoped to. Please let me share some information that you may or may not find helpful.

    My mother also used carbo/taxol for her first round of treatments. And the cancer was back within 5 months. She then used Doxil and Avastin and the cancer came back. Most recently she has used Gemzar/Carbo combination and had clean scans on New Year's Eve. We all know it will come back some day but we hope and pray it is not for many years.

    First, DO NOT GIVE UP! Yes this is a terrible disease and it takes far too many loving women from us at far too young of an age but there is hope.

    Secondly, look to supplementary treatments. My mother has worked with a Naturopathic doctor in Colorado who works with Ovarian Cancer patients and sees amazing results. She is in favor of using traditional medicine but she also helps with other changes that can truly help not only in the fight against the disease but also in the minimization of symptoms during treatment. The specific doctor we have worked with is Nasha Winters. http://namastehealthcenter.com/staff/nasha.html She may well be able to help you find someone nearer you who you can talk to.

    Do not take no for an answer and keep looking. This disease is not a death sentence. You may have to ask repeatedly for what you want and what your wife needs but there are options and there is hope. As Amanda fights for her life you can fight for her.

    I am here if you have ANY questions or need to vent. I know how scary it is to be facing this and I can tell you, there is hope. My mom received her diagnosis just over 2 years ago and after a scary 21 months is now doing well. We live from scan to scan and blood test to blood test but we live and we love and we do it with hope for a happy future together.

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  11. AMANDA SOUNDS LIKE A WONDERFUL LOVING PERSON , SHE SEEM TO KNOW WHAT IS GOING TO HAPPEN , AND SHE IS READY ,I KNOW IT IS HELL WHEN THERE IS NOTHING WE CAN DO BUT LOVE THEM AND SUPPORT THEIR CHOICES, LIVE EVERYDAY LIKE IT'S THE LAST, POSITIVE VIBES,SMILES, HUGS, KISSES, TEARS THE WHOLE THING , THE MOST BEAUTIFUL PEACEFUL EXPERIENCE I EVER HAD WAS SITTING WITH MY BROTHER AS HE ENTERED INTO THE OTHER BEAUTIFUL WORLD, PLEASE DON'T STOP PRAYING FOR STRENGTH & GUIDANCE , XOXOXOO

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  12. SEEK A SECOND, THIRD, FOURTH OPINION. I mean it. Dr. Loggie at Creighton (in Omaha NE, however he is a Canadian doctor, not sure how much that matters) saved my brother's life - it was stage 4 appendix cancer, which takes a similar form to ovarian cancer. Upon diagnosis he had tumors on his large intestine, small intestine, stomach, liver, gallbladder, spleen, omentum, and diaphragm. A year later after treatment he is NED. You have nothing to lose - seek out all the treatment you can find! You, Amanda, and your child deserve the chance at life.

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  13. Scott, Amanda... gosh, I am welling up because just as you have already said, what do you say? What is there to say? I have nothing I can give you to help, but perhaps know that I swear to you that I will live every day differently because of your story. If nothing else, know how much you've impacted those who are able to say they know you.

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  14. I am so sorry to hear your story. PLEASE PLEASE PLEASE purchase this DVD and watch it. I have seen this work for people I know that have had cancer and were cured by diet. It is worth trying if it could save Amanda's life. http://www.ravediet.com/caDVD.html

    Also, this book http://ravediet.com/whatsinbook.htm

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  15. I am so, so, so sorry to read this post.............
    I am praying and will continue to pray for a miracle and a remission.
    Heidi

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  16. That damned disease. There aren't any words in the dictionary I can use to help. Just treasure every minute, every second with her, Scott. Each and every one. Thoughts and prayers from here in abundance.

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  17. Scott, I don't have any words for you, just incredibly sad and disappointed, to say the least. Hugs to all of you.

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  18. Dear Scott, Amanda and Gordon:
    We are very sad to hear that your cancer has returned. Our thoughts and prayers are with you. Unfortunately, we don't know the answer to "why me" but it sounds like you are working through "what now" considering a move to Ontario. You still have the ability to fully participate in your life, make decision, so continue. Your blog is great Scott. Keep us informed. Again, our thoughts are with you all.

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  19. Look into Natural Medicine treatments, don't ever give up GOD IS WITH YOU, my husband had pancreatic cancer and it has been 5 years, he follows a juice diet, no protein and is really healthy now, after surgery he was told his cancer was going to be back within 3 months so we went to see Dr. Im from the cleasingway in Seattle wa and follow his lifestyle change diet. If you need me to give you more information my email is mirily2@gmail.com. God bless your family, lots of prayers and hugs for little Gordon

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  20. Scott, I"m terribly saddened to read this. I knew Amanda in Kirkland Lake, when I was a teen, and I took piano lessons from her mom, and did theatre with her dad, and watched Amanda, and Amy, and Ruth grow up. Do you have a fund set up, where I might put in some money for Gordon's college fund, or for your move, or just to make Amanda's days a little more easeful? Please let me know. Megan Leslie knows where to get hold of me.
    All my love and heartfelt sympathy to your family,
    Aimée Morrison

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