Questions you might have about my life in the last four years, and my current goals.
In the fall of 2018, you discovered you had cancer. So what happened?
In mid-August, I got a post card reminding me that it had been two years since I'd had a mammogram and I needed to make an appointment for one as soon as possible. We were getting ready to go on a three-week holiday to Newfoundland and Nova Scotia in late September, and I still had a lot to do before we left, so I almost ignored it. Fortunately, I decided to call and get it over with, and I was able to get an appointment that week because someone else had cancelled.
A couple of days later, I got a call for a second mammogram and an ultrasound. After that appointment, I met with a doctor who told me there was a small lump, and I’d need to have a biopsy to find out what it was. I won’t go into the details here because I've blogged about it earlier, and actually won an award for the post. Suffice it to say that the lump, which was quite small and soft (neither I nor the surgeon could feel it), was cancerous, and after I returned from our holiday, I had surgery and later met with both the surgeon and an oncologist to get the results of the surgery.
The surgeon said everything went well, and there was actually a very good chance that the lumpectomy had eliminated the cancer, but I might need a “pill” and radiation to be safe.
However, the oncologist I saw a few weeks later told me the cancer was aggressive (triple-negative), and he recommended chemotherapy and radiation. He didn’t push me, and I could have declined and taken my chances, but I felt I needed to do everything I could to make sure the cancer was really gone. So, it was on to four months of chemotherapy followed by a month of radiation.
(NOTE: IF YOU ARE A WOMAN, A MAMMOGRAM IS YOUR BEST FRIEND)
When you chose to go ahead with the chemotherapy, did you know what the side effects might be?
Intellectually, I did. I mean, I read the long list of possible side effects, from hair loss to fatigue to much worse things. But unless you’ve experienced it first-hand, either yourself or with someone close to you, you don’t really know, do you? My dad died from lung cancer, but by the time they caught it, they weren’t able to do anything except keep him comfortable (which he was). So, no, I really didn't have any idea what it would be like.
What was it like when the chemotherapy began?
Honestly, for me, from the moment in early November when I first learned I had triple-negative breast cancer, I seemed to move in a sort of alternate universe. Perhaps it was a form of "fight or flight" response. I chose to fight; but I also realized instinctively that it was my fight. And if the oncologist thought my best chance was to have the chemotherapy, then I’d do it. To be honest, I consider myself a realist, but I think I lean toward being an optimist. I rarely expect the worst to happen.
I knew the doctors and nurses would do their part. And my husband and other family members would do everything they could to look after me. Plus, I knew there would be people praying for me. But, ultimately, it was my body that was caught up in the actual battle. Doxorubicin and Cyclophosphamide are both heavy-duty drugs with a lot of side effects, and I would be the one experiencing those side effects.
In the beginning, my energy went into preparing for the chemo. Not just making my bedroom comfortable and welcoming (see the above picture), but also thinking about what I was currently working on and what I'd be able to delay or discard. I prepared for the worst as much as possible, and we told our family and friends and colleagues what was happening so they wouldn't be surprised.
How did the chemo affect you in the beginning?
Once the chemo started, my energy seemed to drain right out of me. Each day became one of simply surviving—taking any medicines or vitamins I needed, eating well, going for a short walk (even if it was in the house), and maybe, if I had a working brain, doing a little writing.
I watched some TV (mostly curling, basketball, and British mysteries), but for the most part, I found it easiest to read. And I read hundreds of books. Most of them I bought for my Kindle because I often found myself awake in the night and a Kindle or Kobo reader is great for day or night. You can read it in bed, while you eat, in the bathroom, while getting the chemo—literally anywhere.
But I also borrowed lots of books from my local library, some as paperbacks or hardcovers but I also discovered Libby and Hoopla have eBooks that are available through our library. I read those on my iPhone or iPad.
How did you and Les manage during this time?
Well, mostly he kept me alive. He made all the meals, did the dishes, vaccuumed, drove me wherever I needed to go , did the shopping and so forth. I did do my own laundry. (I should add that he's been doing the cooking and grocery shopping since 2001.)
Our older two grandsons always need money, so they did some of the cleaning and yard work.
What was your biggest issue during this time?
Being tired. Like, all the time. Waking up tired. Brain fog was there, too. I’d forget names of things I used all the time. Instead of “can opener,” I’d say, “thingie you use on cans.” Stuff like that. I'd start doing something, get distracted by something, and completely forget what I was doing.
But mostly it was fatigue. No energy to even try to do anything that required me to focus. I would think of something I “should” do, and then I’d reject the idea because I had no energy to even think about it. Or I’d think about it and even think about the steps I’d need to do. Like I should send X an email. So, I’d need to:
- Get up
- Go to my computer.
- Think about what to say.
- Open my Outlook.
- Find their email address.
- Write something
And most days, it ended right there. I had no energy to even think about what to write in an email never mind writing it. As for phoning someone? No way.
Were nights better or worse than days?
Mostly, they were just different. I was often awake in the night. Like, wide awake. But there was no way I was getting up. I’d just read until I got tired enough to go back to sleep.
Because of that, and because Les has always needed less sleep than me (he’s always gone to bed later than me and gotten up earlier), he moved into the next-door guest room and used our main bathroom. That way, neither of us woke the other one up. And he’d hear me if I called him. He also kept the phone in his bedroom so it wouldn’t wake me.
Was it frustrating when you were awake at night?
Not usually. When I woke up wide awake, I’d just read until I became sleepy.
The biggest change was that I went from going to bed at around 11:00 p.m. to getting so tired I could barely keep my eyes open by 8:00 p.m., so I just started going up to get ready for bed as soon as I felt tired. And I might sleep later in the morning too. The thing is, as an indie writer who works from home, nobody was waiting for me to do something, so I was able to just basically stop pretty well everything I normally did and nobody was giving me a hard time about it.
To be honest, one of the best times of the day for me was the moment when I could slip into bed, all cozy and comfortable, knowing I had a good book to read until I became sleepy. And if I finished that one, I had many more. So, I never had to lie there worrying or being anxious.
Did you not want to take sleeping pills or anything to help you sleep?
No, I’ve never taken a sleeping pill. If I had a headache or pain anywhere, I might take a Tylenol. Even regular strength ones make me sleepy. Extra-strength makes me very sleepy.
Did you learn anything about yourself during this time?
I learned a very unexpected thing. I've honestly always believed that I could only read one book at a time, and that I had to finish it before beginning the next one. I guess the exception was when I was in university reading books on various subject matters through the year, but I never really thought about that as “reading a book.”
Now, however, I often found myself with two or even three books on the go. Paperbacks were for the day and eBooks during the night. I might have at one book open on my Kindle, another on my iPad, and then a paperback.
Most of the books I read were mysteries or fantasy, because that's what I enjoy. But there were heavier books, too. At the end of 2020, I even posted a blog with 10 of the best nonfiction books I'd read in 2019-2020. (Hmm. I need to do another one of those this year.)
You said no one was waiting for you to do anything on a daily basis, but there was one big thing, wasn’t there? A book you had planned to edit and publish?
Les and I had published our first Hot Apple Cider book in 2008 in a unique partnership with World Vision Canada and The Word Guild, a Canadian group for writers that I co-founded (along with writer and editor Wendy Elaine Nelles and my husband, Les). The book, which was edited by Wendy and myself, was a huge success, and in 2011 we published A Second Cup of Hot Apple Cider with the same partnership.
That book was followed a few years later by Discussion Guides for the first two books, A Taste of Hot Apple Cider (2014), Hot Apple Cider with Cinnamon (2015), and Christmas with Hot Apple Cider (2017), all of which I edited and Les and I published on our own.
I had done a cross-Canada “Christmas” bookstore tour in the fall of 2017, meeting up with many of our contributors along the way, and the book sold well. Consequently, early in 2018, Les and I decided to go ahead and publish a sixth book. By the time my cancer was discovered, we had already begun reading submissions.
I knew we'd be disappointing quite a few people, but I soon I realized that while I could follow what I was reading, there was simply no way I'd be able to do the level of editing required for a new anthology any time soon. It was hard to tell everyone who had sent in stories that we weren't going to be able to use them at this time, but it was actually a relief to know I wouldn't have that hanging over my head.
You were also blogging, right? Were you able to keep that up?
Yes. I’d been blogging a memoir each week about my childhood. I did write some posts about the cancer (partly so I'd keep it straight for myself). The first one actually won an award, which I received in June of 2019 (see photo above). However, the memoir I'd been blogging weekly came to a halt with only a half dozen or so posts to go.
I eventually realized that the problem wasn't just that I lacked the energy. It was a lot of work to do the research and organize all the details necessary to write the posts. And at that point, I just didn't have the brain power to do it. I've always been a multi-tasker and I've been able to jump from one thing to the next and keep all the details in my head. But, now, I was struggling just to remember if I'd taken my vitamins that morning.
(Note: weekly/daily pill organizers and iPhone daily alarms are wonderful! Assuming you actually take the pill when the time alerts you and don't just turn it off and forget what it was for.)
I had also started a couple of newsletter posts for fans of my books, and I just basically gave up on those, too. I didn’t know if I’d ever write another book, so what was the point in pushing myself and using the little energy I did have to try to hang on to my readers? And to be honest, at that point, I really didn’t care.
During this time, did you feel guilty for more or less disappearing?
After the first few weeks of basically hiding in my cocoon with my books, I did begin to feel a bit guilty. But then I stopped.
The thing is, I've always been a ridiculously busy and fairly efficient person. (Some might even say driven.) I’m a natural organizer. I see the goal and I see the steps that need to be taken to meet that goal. It’s not forced. Ask me about almost anything and I can come up with a step-by-step plan. Carrying out the plan is another story, of course, but if it’s something I truly believe needs to be done, then I will do it no matter what.
The other thing about me is that I care about people and want to help them, but my go-to method (aside from organizing an action plan) tends to be that of a teacher. My entire life, my first instinct when I’ve learned something new is to tell someone else.
But I truly felt this voice inside telling me that if I never did another thing except stay in my room and read, I’d have done enough.
What did you think that meant? That you’d “done enough?”
For my entire adult life, I've had people tell me they have no idea how I do everything I do. Well, I’ve never known how I did everything I’ve done, either. And to be honest, looking back, sometimes I have trouble believing all the things I've done.
One example: In April of 1980, Les and I moved from Regina to Mississauga with an almost-4-year-old, a 2-year-old, a 6-week old, and a 6-year-old miniature poodle. I'd had a C-section for each of the kids, including, of course, the 6-week-old.
We didn't know a single person in Ontario. Les was working for IBM, so he would be busy every weekday as well as doing a fair bit of travelling to western Canada and the US. So, a lot of the time, I would be pretty much on my own with the kids.
What were we thinking? We believed we were supposed to make the move. IBM had offered the new job, which came with a promotion, and then we'd discovered that the denomination of the church we'd been helping to plant in Regina was going to be planting a church in Mississauga, so we chose to accept the move even though it meant leaving all our family and friends behind.
We'd actually lived in Toronto for six months when Les first started with IBM. At that time, they had a training program for new staff. And the truth is, we'd loved the multi-cultural aspect of the city as well as the profusion of trees and flowers. So we weren't totally going in blind. But, still, it was a huge move.
Anyway, Les had flown down to Toronto just before Christmas and bought a house. He took pictures so he could show us what it looked like when he got home. (This was in the pre-internet days.) When we arrived in late March, we discovered there had been some damage from burst pipes. But other than that, the house was fine. And because of the water damage, insurance paid for the living room, hall, and stairway to be repainted and for new carpets to be put in, so that actually turned out well! Over the summer, Les finished the basement so the kids had a playroom. And that fall, we became part of a 4-family church-planting team. (No, none of the others had young kids.)
As part of the church plant in Regina, Les had been a deacon, and I'd been overseeing Sunday school, leading a women's Bible study group, and co-leading an adult Bible Study with Les up until the week we moved. Plus having people over for Sunday lunch or other activities quite often. We basically moved into similar roles with the Mississauga church. Please don't ask me how I managed. I just seem to have enjoyed filling every minute. And although my roles have changed over the years, I've always been busy with more than one thing. I guess I just enjoy being busy.
All this to say that one night in the spring of 2019, when I had been reading but was still awake, I realized that I should feel absolutely no guilt if I did nothing but read mysteries or do puzzles or watch TV or sleep for the rest of my life because I'd already done far more than many people do in a lifetime.
I stopped feeling guilty and accepted that other people could manage without me. Programs could manage without me. Books could get written without me. Even my family could survive without me.
Eventually, you did start to have a bit more energy, right?
My chemotherapy treatments ended on March 22, 2019.
Then I had a short break, followed by 20 radiation treatments, which finished at the end of May.
Over the rest of that year, I very slowly began to feel more like what I call my "normal self."
It sort of felt like as my hair began to grow back, my energy and brain slowly started to come back, too.
Don't get me wrong. I still had a number of ongoing side effects.
I had what I call “waves” of neuropathy which basically means cramp-like pain in my toes, followed sometimes by pain in my fingers, then pain in the area where the surgery had been, and then pain in my jaw.
I also discovered that anyone who has had breast cancer surgery really, really needs a good physiotherapist because the surgery (especially the loss of lymph nodes) causes all kinds of issues you might not suspect are associated. (I am fortunate to have a brilliant physiotherapist.)
But the biggest issues for me were still the lack of energy, the brain fog (also called post-chemo-brain) which was mostly forgetting names for words and things like that, and what I like to call apathy. I kept thinking of all kinds of things I wanted to do, from sending cards to people to organizing times to do things with our grandkids, but I simply didn't care enough to try to find the energy, which was non-existent anyway. I often found myself just ignoring everything and going back to reading my books.
Were you keeping up at all with what was happening in the world during this time?
During the past 8 or 10 years, I’d learned that the media is often biased or missing part of the story, and that there was a serious absence of unbiased, investigative reporting. I’d been on Facebook, Instagram, and Twitter for enough time to find some people i trusted, so, now, when I wasn’t reading books, I was reading posts from those people and following more people, especially on Twitter.
I decided early on that the one thing I could do was try to bring attention to the voices of other people who I thought needed to be heard. I did it partly to encourage them and partly to try to get their thoughts heard by more people. And before you ask, yes, I read the thoughts of people I didn’t necessarily agree with, and of people whose words were painful because they pointed out things I could do better. (See some of the books in the above list.)
Beginning in October of 2019, I did manage to write three blogs with some of my own thoughts, but they took a lot of time and energy, and a lot of editing help from Les. I set them into a new area of my website, called “From My Perspective.” https://njlindquist.com/blog/from-my-perspective/ There are many more posts like this I’d like to write.
Maybe one of these days….
I believe that one other thing happened in December of 2019, but to Les, not you?
Yes. Les had noticed on his Fitbit that his "resting heart rate" was getting lower and lower and lower (from 64 to 36 over a three-week period). Our GP sent him to a cardiac specialist who did some tests and diagnosed atrial flutter.
Les ended up getting an ablation on December 4th. In his words, "There were places in my heart that were short-circuiting, and they cauterized those places to stop the short-circuiting." The good news is that it fixed the problem.
More good news was that I had enough energy and brain to drive him to Newmarket and back and look after us both for a few days.
I'll end Part 1 of this post with a photo of myself on Christmas Day, 2019, with our youngest grandchild. (Note my crazy hair!)