Wednesday, May 8, 2013

Eight days into chemo with ups and downs

First off, thanks to the literally thousands of people who've read my April 16 post revealing Amanda's cancer diagnosis and the circumstances around it. Thanks also to the folks who shared it on Facebook, Twitter and Google+, plus Reddit and parenting forums.

If you missed it, the TL;DR summary: during C-section to deliver our first child, doctors found advanced ovarian cancer in my wife's abdomen.

The support we've received in the past few weeks has been tremendous. I can't express my thanks fully enough, nor will I attempt to list all the people who've helped, offered to help, or offered kind words. Everyone has been so great.

Today was the very first World Ovarian Cancer Day. I don't think most people know much about ovarian cancer, other than that it's pretty goddamned scary. That part's true. Statistically, it's far less survivable than breast cancer, which gets most of the attention in the woman-cancer sphere.

Part of the problem is that ovarian cancer symptoms are vague and easily dismissed. Also, breasts are frankly easier to touch and feel for lumps. By the time most ovarian cancer cases are found, it's already spread. This is sad and probably unnecessary. Let's try to change that.


Chemotherapy began last Tuesday. We went in for one last Q&A with our gyne-oncologist at the Nova Scotia Cancer Centre. Final briefings on side effects and a recap of the battle plan, then upstairs to the chemo floor.

Chemo Day One was long and boring, really. Well, aside from the terror and fear and "damn, this is really really real" moment when her IV went in. They emptied bag after bag of medicine/poison into her body. Steroids, Benadryl, Taxol, Carboplatin and a saline chaser.

She had a comfy chair, I had a ... chair. I ain't complaining. But next time we'll bring phone chargers and something to read. Both of our smartphones drained to nothing by the end of the long day. In total, we were there something like eight hours.

Amanda's last portrait before the Chemo Haircut.
We saw a variety of people getting chemotherapy there. Most much older than us -- I'm 39 and she's 34. I'm pretty sure we were the youngest there. One woman appeared to be in her forties, but most of the men and women would have had grey hair, if they'd had any hair at all.

A trip to Wal-Mart got us some buckets for barfing. They haven't been used for that yet. Nausea has not been the side effect.

I'm not going to speak for her, but the sudden halt to breastfeeding might be the most disturbing side effect so far. She was breastfeeding our child from the beginning and we intended to continue that if the chemo would allow. However, checks with nurses, our own online research and an inquiry at Motherisk, the drugs-and-pregnancy info center at Sick Kids Hospital in Toronto, told us the chemo drugs would be found in the breast milk for weeks.

The plan to pump-and-dump, then resume feeding, had to be abandoned immediately. She had to go from feeding every few hours to no more feeding. We'd banked a few days' worth of milk for the freezer.

But now she'd have to wean off feeding by pumping milk that was technically cytotoxic -- it was so dangerous we couldn't touch it. It had to go down the toilet and she had to flush twice with the lid down.

The process has been painful and looks to me to have been emotionally tough, too. Cancer has taken one more thing away from the baby. Yes, formula feeding is fine. Yes, if we were hell-bent on breast milk, we could have arranged something with donors. It's just hard.

Several days after the treatment, she began feeling crippling pain in her feet, knees, hips, pelvis, legs and lower back. This was predicted but that didn't make it easy to tolerate.

Imagine something making its way into the core of your bones and poisoning your bone marrow, and your bone marrow crying out in a pain that echoes through your lower body but cannot be treated. It was hard to see.

Now her scalp is tingling and starting to itch. We await the hair loss.

In anticipation of the baldness that's coming, she ordered some headpieces from softhats.com and got a couple from the Sunshine Room at the hospital.

She also went with her best friends to her favourite aesthetician for a shorter haircut. She'd been growing her hair as long as I've known her. She had short hair when we first met and it's been getting longer ever since.

She came home and looked so good. So hot. Younger, even.

The sexiest cancer patient I've ever heard of is my wife.


Gorgeous. My wife has cancer. She's going to lose her inside lady parts. She's about to go bald and get sicker and sicker for months. But man, she looks sexy as hell.

One more picture here, and this echoes the one from the original post. You're welcome to compare the changes.

The baby's bigger. Her haircut is smaller. She's getting through this so far.
What's next?

Another two weeks and we'll be back for another round of chemo. Another three weeks later. Then about a month, I think, and she'll have the complete hysterectomy. A little recovery, then they're planning three more rounds of carbo and Taxol injected through a port in her abdomen, straight into the peritoneal cavity.

They tell us it's much harder to tolerate than the IV method, but could provide the best chance at wiping out any remaining cancer cells.

Thanks again to everyone who's been spreading the word. This is a difficult process and I'm virtually certain it's all going to catch up to me eventually.

I hate that this ends up sounding like an aside, but: Our baby, Gordon, is fantastic. I'm loving the dad stuff.

Amanda said it and I'm glad she did: She's not going to fight this in the dark. Thanks for being part of this.

Oh, and the blog colour? I changed it to teal. Apparently that's the "colour" for ovarian cancer. More on that another time, I guess!

9 comments:

  1. Kudos to you Amanda for not wanting to fight this in the dark. Kudos to you Scott for being her voice letting us in on this journey with you!

    Thinking of you always! XO

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  2. Thinking about the three of you Scott.. sending positive energy/vibes/whatever the hell you want to call it your way.. Gordon is a lucky fella..

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  3. "With you" from a long way away. Thanks for the update. Beautiful mom and son :) Randy Smith (Andry H'tims from Twitter)

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  4. Dear Scott: I thank you for demystifying the whole process, start to finish. The total understanding of the impact is still with you guys, but you have helped the rest of us understand the pain, the timeframes,and outcomes. And your love. You are Amanda's best chance of recovery, your singleminded devotion and care of both her and Gordon. Prayers for your continued strength together. lv shirl

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    1. I'm glad to hear it's doing some demystifying! Until we went through this, we didn't really know what would happen.

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  5. We are praying for you here in KL :)

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  6. Thinking of you and baby lots and lots.

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  7. Hi Scott and Amanda ... my sister Kelly Mauger shared your story with me. So inspiring <3 I went through 8 rounds (16 weeks) of chemo last year for breast cancer. Your story hit me so close because I met so many women (far too many) in my chemo suite who's pregnancies/birthing babies etc. essentially saved their lives. Its amazing what our bodies go through when we're pregnant and have babies. Its almost like your baby was the blessing that brought you to this next challenge. You will get through this ... chemo sucks (I ain't gonna lie) but you'll come out on the other side stronger and so aware of how precious life is. If your head was tingling on this post I'm sure you've lost your hair by now and look beautiful! Hopefully you don't have much nausea (I found the taxol didn't cause nausea, just aches). Hope you're coping well. I wish you well and I'll be keeping up with Scott's blog (LOVE IT :). Sending positive vibes ... Christine (Worth) Vanderheiden.

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    1. Thanks, Christine. Eight rounds of chemo! Wow!

      Nope, no nausea so far. That's one thing I hope people will get out of these stories, because when I thought of chemo before, I always thought nausea and hair loss. So we bought buckets and hats. Turns out there was no nausea and a ton of aches. Go figure.

      Thanks for reading and I hope you'll be back. Congrats on making it through. I hope you have a long and happy life.

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