Why I More or Less Disappeared in the Fall of 2018 and What I’m Doing Now – Part 2 of 2 

If you missed part 1, you can find it here.

As 2020 started, you were just beginning to feel halfway normal. And then the Covid pandemic began. How did that impact you?

Actually, the first thing that happened in 2020 was that one of our sons moved in with us. He and his wife had separated, and since we live less than a ten-minute walk from their house, and we had room, it seemed easiest for him to move in with us.

Long story, but when we moved into this house in 2000, we had not only our three youngest sons with us, but also our oldest son, his wife, and their two young kids. They needed to be able to save money to get their own house and, by including them, we justified getting the house plan we really wanted. We also added an extra foot to the basement height to make the space more livable.

As soon as we moved in, Les and our oldest son got to work finishing the basement to make a kitchen/family room and small playroom for them, and they also had two of the bedrooms. They were with us about four years. The extra foot in the basement and the deeper windows made it a bright extra floor rather than the usual basement. 

Anyway, because of that, it was no problem for our third son to move in. He could have the basement for himself and his three kids, then aged 1, 4, and 6. Plus, he had a second-floor bedroom for himself and the baby, and the older kids had their own room. Eventually, I moved my office out of the fourth "bedroom" to our living room so their youngest could have her own room.

Shortly after our son moved in, and just as I was beginning to have a bit more energy and brain, the Covid pandemic began and the world changed. Our son wore a mask when he came and went, as did the older two kids when they were here (roughly 50 per cent of the time), and we basically stayed away from them. Which was sad. But at that point, we had no choice. Neither of us wanted to get Covid.

When we saw our other sons and their families, it was mainly outside or wearing masks.

I did a little writing. Kept up with people on Facebook and Twitter. Tried to get out for a walk each day. And continued to read a lot. Les still did any necessary grocery shopping, but it was mostly ordering and pick-up. Any shopping I did (which was minimal) was done online and delivered, or Les picked it up.  

At this point, you were starting to have more energy and thinking ability. Were you able to do anything with it?

I was starting to have some energy and some "brain," but I was still far from what I call "normal me." My goals at this point were to walk as much as I could, eat healthy, not gain weight, stay away from everyone, read a few heavier (nonfiction) books as well as novels, and keep in touch a bit on social media. While there was a lot going on at this time in terms of world affairs, there was nothing I could do about them, so I just tried to be aware and get healthy. 

And then, on August 16, 2020, I had the first of six scheduled doses of zoledronic acid recommended by my oncologist. Apparently, other than chemotherapy and radiation, it's the only treatment for people with triple-negative breast cancer. It had been pushed back for various reasons, including a dental implant I was in the process of getting when the cancer was discovered, and of course, the Covid pandemic. It was given the same way the chemo was, but in a much smaller dose. So I got the zoledronic acid in the morning and it took about 15 minutes total. 

After lunch, because it was a beautiful day, I went for a short walk. A few blocks away from our house, I realized I didn't have my cell phone with me. What if I had a bad reaction? As I kept walking, I thought, Well, I can ask someone for help. Maybe knock on a door and get them to call Les. But do I know our number? Big sigh. Yes! Yes, I do! And then I thought, I could flag down a car and get them to drive me to our house. But do I know our street name and house number? Yes, I do know our street. But our house number... Even though we'd lived in the same house for almost 19 years at that time, I didn't remember the number.

I spent the rest of the walk secure that I knew our home phone number (literally the only phone number I do know), but desperately trying to remember our house number. It's hard to explain how that made me feel. I knew where I was and how to find our house, but I felt adrift. Like my brain had hidden a valuable piece of information on me and I couldn't find it.

When I got back home, I went to the front door and looked at our house number. Oh, yes, of course. But ten minutes later, when I told Les about the incident, the number had been erased from my brain again. And for a solid week, I had difficulty remembering it.

I really don't know if that episode was a coincidence or not, but before the week was over, I was once more swamped with lethargy, brain fog, and apathy. Some days, I had a little energy but no brain; some days, I had a little brain but no energy; some days, I had neither; and the odd day, I had both some energy and some brain. I loved those days, and always hoped they’d stick around. But they never did.

Did you have another zoledronic acid injection?

I was scheduled to have the second zoledronic acid in February, but Covid was delaying appointments, and that kept me from getting it until April, 2021. To be honest, I wasn't at all sorry it was postponed. But I did feel I should try it again.

So there I was in my oncologist's office the day before I was due to get the zoledronic acid. That's normal. They check your blood and the oncologist does a quick examination. But while the oncologist was checking my heart and lungs, everything went a bit crazy. I wrote a blog about it, but to summarize, my blood pressure went quite high and my heart began beating way too fast. My oncologist thought I could be having a stroke.

The good news is I didn’t have a stroke. The really good news is that because my oncologist immediately sent me to get an ECG, they discovered I had an atrial flutter, similar but not the same as what Les had had the year before. 

The cardiologist I later spoke to on the phone (I have yet to meet him, but he's the same one Les had) sent me for some additional tests, and then booked an ablation. He also put me on blood thinners and beta blockers.

I actually did get the zoledronic acid a week later, and I didn’t forget my address this time. But by then I had lots of other things to think about. I was still trying to walk most days, but the beta blockers made me feel like I was walking through quicksand. Any energy I’d had was totally gone.

After a few weeks, I called my cardiologist and was able to convince him that I’d keep some beta blockers with me at all times (in my iPhone case) and I'd take one immediately if my heart started racing again. Whew! The blood thinners might be having some side effects but nothing like the beta blockers.

Thankfully, in August of 2020, there was a cancellation, and I was called to come in for an ablation at Southlake Hospital in Newmarket the next day. As had happened with Les, a specialist cauterized the parts of my heart that were misfiring and causing it to beat too fast and with no effect.

So l’d now gone from the fall of 2018 to the fall of 2020 with very little energy and not much brain. (Whether the chemo or radiation caused the heart issues or the heart issues were what was really causing my energy loss, we’ll never know.) I'd managed to keep writing my more-or-less-weekly LoveChild Memoir blog posts up until August, 2020, but that's when I gave up with only a half dozen or so to go. I hoped that I’d finally get back to normal in 2021.

You mentioned “neuropathy” earlier. Did that stop at some point?

I wish!

No, the waves of neuropathy continued unabated.

Well, that’s not quite true. They weren’t as bad as they were when I was still having the chemo. My nails were no longer falling off or threatening to. But the waves of neuropathy still came. The fatigue and post-Chemo brain were still there, too, although some days I felt almost "normal me."

By the way, when I say waves, I mean they go away for a while and then come back, kind of rolling in, first one symptom and then another. It usually begins with my toes hurting. Kind of a cramping feeling. Sometimes my fingers also hurt, but never as much as my toes. Then it moves to my left side where I had the tumor and the lymph nodes removed. Either it will just kind of ache or the whole side will suddenly seem to have a cramp—like you sometimes get in bed out of the blue, usually in a foot or leg. This usually happens when I’m sitting down, but sometimes when I’m in bed. From there, it often seems to move up into my jaw.

I should mention that my dentist is one of the few people I’ve seen on a fairly regular basis during the pandemic. Sometimes for actual issues, like a check-up, cavity, cleaning, and so forth, but sometimes because my jaw aches and I think something is wrong, but he doesn't see anything, and it eventually stops aching. So it might be part of the neuropathy. 

In February of 2021, I even had enough energy, and I hoped I had enough brain, to apply for a Mentorship Microgrant from the Writers Union of Canada, which I've been a member of for many years. The program was giving $500 grants to 80 members who were either willing to mentor someone else or who needed help getting a mentor for themselves. I thought maybe I had enough brain and energy to share what I had learned with someone else, and I knew just the person I wanted to mentor. Fortunately, that worked out, and although the program was officially from April to the end of June that year, we're still in touch. (I also got a second microgrant this past spring!)  

By fall, 2021, I was starting to feel not too bad. I was able to do some website updates, take some lessons about marketing books on Amazon, and create or buy new covers for a number of my books. I'd even managed to find enough energy to edit and publish a book I'd written for my second granddaughter years before. I was really hoping I'd soon be back to "normal me." But that didn't happen.

What did happen?

Just before Christmas, 2021, I had two different things going on. My teeth on my right side (top and bottom) were aching, but we didn’t know why. My dentist booked me for a sort of ultrasound for teeth. They didn’t find any major problems so we didn't know what to do. I hoped/assumed it was from the neuropathy, which was still going on. 

At the same time, I was pretty sure I had a urine infection, so I phoned our family doctor, and he gave me antibiotics. The weird thing is that the antibiotics seemed to affect my teeth, because the aching went away. 

The need to go to the bathroom every five minutes got somewhat better, but a week after I stopped taking the antibiotics, the urine infection symptoms reappeared. This time, my doctor gave me a different antibiotic and also got me to go to the lab and leave a sample. The new antibiotic made me sick to my stomach but did nothing else, and the lab tests didn’t show an infection. The only problem was that I still had to go to the bathroom all the time.

So, on December 23rd, still without actually seeing me, my GP gave me another, longer, prescription for the original antibiotic and booked me for a pelvic ultrasound on January 4th.

On Christmas Day, we saw our oldest son and his family briefly, and then had a mini-Christmas dinner and opened gifts with our third son and our youngest grandkids at our house.

On Boxing Day, we did a drive-by visit to drop off presents for our two sons who live in Toronto. We also got to meet our youngest son’s girlfriend in person for the first time. (We’d “met” her in August via Zoom.) It was a quick trip since we didn’t plan bathroom stops anywhere. (Yes, I wore protection.) We dropped off gifts at their door for our second son's family because they were all sick and thought it might be Covid. We literally saw our son wave his arm through a crack in the front door and that's it.

It was kind of a sad Christmas.

So, 2022 began with a pelvic X-ray, right?

Yes. And here’s where it gets really frustrating.

We were looking after our three youngest grandkids on that day because they were off school, so Les dropped me off at the medical building where they did the ultrasounds and went to get the kids a treat while they waited. (Aside: No, I haven’t been driving much for the last four years. I don’t trust my brain to stay focused or to have fast reactions.)

Anyway, I walked into the small building, which is mostly medical offices of some sort, got to the elevator, realized I didn’t have my mask on, and— Oops! I had forgotten to bring a mask!

I covered my face with my coat and hurried to the office where they gave me a "hospital" mask (aka pretty-well-useless blue one).

After the pelvic ultrasound (and a transvaginal ultrasound I didn’t know I was having), I left the building. (Did I mention that day was my birthday?) 

Two days later, I woke up with the sorest throat I’ve ever had, and I didn’t leave my bedroom for the next week. We didn’t have RATS and I wasn’t going anywhere near Les, our son, or the grandkids, so I waited until I felt better.

Mostly it was just the sore throat along with my usual fatigue, etc. Les did get some tests on about the 6th day and I was negative, but I’m quite sure I got Covid while getting the ultrasound.

The good news is that the ultrasound test results were all clear. And yet, I still had what appeared to be a urine infection. So, a few days after I finished the antibiotics, I switched gears and treated it as a yeast infection (I always get one after antibiotics anyway). It eventually cleared up, but by this time I was basically running on empty in terms of energy and brain.

So, you've had Covid once, and it was just you?

Twice, actually. After being super careful, always wearing N95 masks whenever we're near people, the one time we let down our guard, we got it.

On Easter Sunday in 2022, just as I was beginning to have a little energy and brain, our youngest son brought his fiancé up to our house for the first time and we sat around a table together with our third son and his three little ones.

Our third son woke up on Tuesday and didn’t feel well. He tested himself. Positive. He thinks he must have been exposed to Covid either from a client or a co-worker since masks were no longer required where he works.

Les tested positive the next day, as did our youngest son. I tested positive a couple of days later (although I got sick the same day as Les.) Instead of a sore throat, this time it was more like a cold or a flu and, of course, zero energy, brain fog, etc. We mostly hid in our respective rooms.

Fortunately, our son’s fiancé didn’t get it. Neither did our grandkids, who had gone back to their mother on Monday morning, before their dad got sick.

Since then, we’ve continued to mask and be careful. So far, so good. But with everything they’re finding out about Long Covid, it’s actually very scary. I could count on the fingers of my hands how many times I’ve been inside a store of any kind or a restaurant since in the last three years. Thankfully, our family has been very careful, too, for the most part.

The only “event” I’ve attended is our youngest son’s wedding, which had a total of 15 people in attendance—bride and groom, parents, the bride and groom's brothers, one sister-in-law, two friends of the couple (one with a spouse), and a photographer.

Have you been able to do any writing or writing-related things since the pandemic this past year?

Anything else you’ve done over the last few years other than read, watch some television, and go for walks?

One randomly strange thing I did was to buy some Lego for myself. What happened was that I bought the Lego bookstore set for myself for Christmas, 2021, after buying it for a gift for someone else.

My sons loved Lego when they were young (and some of them still love it). Same with my grandkids. But I didn't have it when I was young, and I was never really interested. However, the bookstore interested me.

I kept it in my bedroom and would do a few pieces each night to make it last. I think I found it easier than the jigsaw puzzles because I didn’t have to search very hard for the pieces. And then I bought the “Assembly Square” this past May when I was looking for a gift for one of my grandsons.

They're both still sitting on top of a shelf unit in my bedroom.

As for television, after my surgery back in 2018, Les and I began watching shows we both enjoy during supper. I mean, we can see each other throughout the day, so it isn’t as if we need to converse while we eat. We tend to watch series, a lot of which are mysteries on Acorn or Britbox.

(For anyone who is interested, I decided to make and post a list of shows we've enjoyed separately.

What have you missed the most over the last four years?

Curiously enough, our youngest son had bought the Pandemic Legacy Season 1 game for us back in 2016 or 2017, and we played it whenever he was up, which was usually Easter, Christmas, and Thanksgiving. (It’s a game you only play once, but in steps). The last time we played it was Christmas of 2019 and my brain was barely there. We were almost at the end, so maybe one of these days we can finish it. The funny thing is that in a way, that game kind of prepared us for the ups and downs of the Covid Pandemic.

Les and I also have a bunch of other games, like Ticket to Ride, Splendor, Carcassonne, Dominion, and Rivals for Cataan as well as older games like Rook, Sequence, Perquacky, Crokinole, and Scrabble. But we've barely touched them because my brain just wasn't up to it. (FYI, I just spent five minutes trying to remember the name Scrabble.) 

But what I miss the most is being with the rest of our family members. All of them, but especially the younger ones. I miss reading books to them, playing games with them, helping them do harder and harder puzzles, taking them shopping or to Legoland, an Escape room, or to get ice cream cones. I’m the one who usually organized our outings or our time with them, and while Covid has made it hard, I know that if I’d had any energy or brain at all we could have managed to do more by Zoom, etc. 

Did you ever think you might die?

For sure. I know breast cancer is one of the primary causes of death among women. Many years ago, I had a very close friend who had breast cancer. In her case, she had a mastectomy, but it wasn’t enough. We weren’t living near each other, but I was able to talk to her a few times. We thought she’d be okay, but then one day she felt unwell and they discovered it had emerged in several places. She died a few days later. So, I have definitely thought about the possibility that it is just waiting to pounce again, or that it could appear in a different form.

Since I was diagnosed, several friends of mine have had a similar diagnosis, and not all have gone as well as mine. Plus, we have other friends and several family members who have had or who have cancer right now.

But at the same time, I could have a heart attack tomorrow or get hit by a car when its brakes fail while I’m crossing the road.

All that to say, as long as we live on earth, we are prone to the consequences of being alive. We still don't know what causes many types of cancer, or why some people are impacted and others aren't. And I don't believe for one minute that God gave me cancer. But I do believe that God can make all things, even terrible things, work out for good. And my memory of trusting God to take care of me actually goes back to one day when I was four and discovered that I was adopted. I won’t go into detail here because I have a blog about it.

And I also have a blog about the day our first son was born when I actually thought I was going to die. 

So, as we approach the end of 2022, how are you feeling today?

What I’ve been finding since this summer is that I have a few days when I feel that I am almost “normal me,” with both energy and a working brain. And then I’ll wake up the next morning and be very tired. No energy at all. But I think the number of consecutive days when I have energy and a brain seem to be gradually increasing. And I've learned not to push it when I don’t have energy or a brain. 

I’ve been able to get some things done in our garden (where I can tell our two oldest grandsons what to do). And I’ve recently repotted my house plants (which really needed to be done!)

I’ve been able to talk “books he should read next” with our oldest grandson and actually come up with the author names I’m looking for. 

I’ve been able to envision what I want to accomplish in the next few months and actually do some work on it.

And, since it’s NaNoWriMo (National Novel Writing Month) as I write this, I’ve set myself a goal to write something every day. Not one particular thing, but this blog post for starters, the prequel for my fantasy (which is now done), and as much as possible of the first draft of my second fantasy novel. 

Hmm. Now that I think about , I've actually been able to think reasonably well and write and/or edit something every single day this month. And I can't recall a single day that I've considered staying in bed. Wow! That's definitely the longest stretch I've gone since before I had cancer. So maybe things are clearing up. 

Anything else you'd like to add?

Right now, I'm basically taking it one day at a time, trying to focus on two or three things each day, and living in the moment rather than worrying about what I'm not getting done.

Writing this has also made me think about swinging into my "teacher" mode to write a post about how to make sure you do the most important things when you have chemo brain (or brain fog). Things like taking your pills on time, and remembering to water your plants, and remembering what you wanted to write that day.

Oh, one more thing. This past Tuesday, I met my new oncologist (my first one moved away shortly after I saw him this spring) and she seems very nice. She convinced me to have another zoledronic acid injection next week. I really, really hope that doesn't derail my current ability to think and to write. I'll let you know.