Invisible Effects: Helplessness

Suffice it to say, simply having cancer can leave you feeling helpless. Ignorance of the cause, uncertainty about the future, fear of treatment effects — that lack of control is frightening. But that’s not the helplessness that I’m writing about here.

In my last post on chemo brain, I alluded to the disorientation that comes from distractedness, brought on by lasting effects of chemotherapy on brain function. Here, I want to drill down and describe the feelings of helplessness that arise. 

In WHY Did I Just Do That?, I wrote about a humorous dream in which I couldn’t understand the reasons for my weird behaviors. But the more sobering side of this is that I often feel that same way during my waking hours. There are things that I’ve done — treating a red light like a stop sign, as mentioned in my previous post — that make absolutely no sense to me and make me feel like I’m not in control of my own behaviors.

To make matters worse, I am not aware that I’m doing anything wrong (or dangerous or illegal!) at the time. When I realize what I’ve done, I’m horrified. Want to feel helpless? Not being able to trust yourself is a pretty good way.

I’ve been told that the main issue is loss of focus. Mindfulness helps immensely in these types of situations, but as anyone who has practiced mindfulness can tell you, you can’t be mindful 100% of the time. In my case, I’m fearful that this distractedness can put others or myself at risk.

This.

Want a few more examples? Some are rather benign, like almost flooding the bathroom because I left the water running in the sink. Or writing an important email and leaving it unsent. Most of us have done something like that at one time or another, likely due to juggling too many tasks at once.

But the things that leave me feeling desperate are the ones that are not easily remedied. Having to learn things over and over again because I’m not retaining information. Having trouble expressing myself and not being able to retrieve words. After working as an editor at one point, this is unbelievably disheartening.

However, one event topped them all: I fell for a (well-designed, admittedly) bank scam where I gave out my Social Security Number despite having taken my work’s cybersecurity training course the previous week, and having received constant reminders from my bank that they will never ask for my SSN over the phone. Besides making me feel unimaginably STUPID, it cost me a good deal of money, time and nerves. 

“Helpless” is not even the best word to describe how I feel. “Hopeless” is a more apt term. “Exposed” and “vulnerable” work too. This begs the question: how much more damage will I do to myself before things start improving? I should be working full-time instead of part-time, given the cost of living in my area. But how can I even think of looking for another job when I’m on such shaky ground? Cancer knocked me down in ways that I never anticipated. Yes, I’m grateful for being alive, but YEESH!

Building new neuronal connections, identifying what aspects of my memory issues are most severe, practicing mindfulness as much as humanly possible — it will take all that, along with a healthy dose of patience, to start seeing improvement. Hope I don’t get distracted and drive off a cliff before then.

Chemotherapy Dreamin’

This is going to sound very strange. In fact, it seems bizarre to me as I’m writing it. But there are parts of chemotherapy that I miss.

So this deserves some clarification: chemo was absolutely miserable and by far the worst part of cancer treatment. When I entered the infusion room, I knew that I’d be out of commission for the next week. I’d feel nauseated with a burning throughout my GI tract and be laid out as if I’d been hit by a locomotive. I could.not.wait for chemo to end.

What changed my opinion? You may think this sounds crazy, but hear me out. The sad fact was, chemo was the only guaranteed way that I could get some rest.

I knew I wasn’t going to handle work issues, clean the apartment, pick up the kids or do anything else that I’m usually expected to do. It was a forced convalescence. One that I desperately needed.

When I was going through cancer treatment, I didn’t worry about the little things. And truly, when you have cancer, everything else seems inconsequential. When you’re wondering whether you’ll live to see your kids graduate from high school, nothing matters as much as survival.

It wasn’t until I finished all my treatments and my hair had grown back that the “little things” started to creep back and set up residence again. Memories of the misery of chemo lose their clarity, the fear of death passes. The overwhelm from a diagnosis is replaced by the more familiar overwhelm of daily stressors, now made worse by the additional complication of chemo brain. No, they’re not life-threatening, but they are all-absorbing.

maarten-van-den-heuvel-5193-unsplash_cropped
I’m gonna lie down and close my eyes for just a sec…

So is it surprising that I wish I could close my eyes and be left alone for a week? Even more so, isn’t it sad that it took cancer for me to be allowed to rest and let others take care of things for a while?

That, I believe, was a warning that my life needed to change and is now the major driving force in my meditation practice.

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Consider: Because my cancer treatment lasted over a year, it became the “familiar”. The “unknown” is what follows, and that includes the threat of recurrence. That’s when things really get scary. Learning to deal with that will literally take the rest of my life.

Peace In Puzzle Pieces

One unexpected thing that had a big influence on me in terms of feeling support from others was a jigsaw puzzle in the oncological radiology’s waiting room. It was a large puzzle with a lot of pieces. Every day for six weeks, as I received radiation treatment, I saw that puzzle in various stages of progress. Eventually, I started poking around at it, and often I would be able to add a piece or two. The next day I came, more would have been completed — seems like a lot of us were poking!

This served as a lovely metaphor for what we, as patients, were going through: cancer is a puzzle, and treatment offers pieces that we put together in hope of finding our way through. All of us were working on this jigsaw puzzle at different levels of ability. Some were stronger than others, some had better support networks, but everyone was shuffling along at their own pace, completing their treatment puzzle, piece by piece, day by day. On days when treatment seemed never-ending, there was gratification to be found in the progress of the jigsaw puzzle.

I had never realized that working on jigsaw puzzles was so soothing. Just as in mindfulness meditation where you focus on the breath, the puzzle offers an opportunity to focus on a particular pattern, color or shape of a piece. It requires concentration, but this concentration comes easily. You don’t have to make yourself focus, it simply happens as you search for a piece.

Eventually, my radiation treatment ended and I left a partially completed puzzle in that cozy waiting room for others to finish, but I longed for that familiar feeling of comfort and quiet. That waiting room had been an inviting sanctuary where my only responsibility was to practice self-care. I wanted that to continue. It wasn’t long before I’d found puzzles to work on at home. I chose the images for how they made me feel, and for quite a few months afterwards, working on puzzles was a meditation. My family played the role of other patients, and together we enjoyed the satisfaction of putting the pieces together.

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Here are several of the puzzles I/we finished at home. Apologies again: as with most other photos in this blog, I never intended to post these online, so the photo quality is lacking. I’ve added info on where these puzzles can be found in case anyone is interested, especially if you’d like to see what the pictures look like under ideal conditions.

“Secret Garden” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): I was looking for a peaceful oasis and this image fit the bill. I loved the flowers and flying creatures, but particularly the koi, which brought a special zen to the picture. (Bad lighting – doesn’t do it justice!)

Summer_Puzzle

“Marvelous Garden” by¬†Oleg Gavrilov (Bits & Pieces, 500 pcs, Amazon.com): I love peacock blue, the architecture smacked of Tuscanny and the flowers (yes, pink ones) completed the scene. This remains my favorite puzzle to date.

Peacock_Puzzle

“Autumn Oasis II” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): Autumn means that Halloween/Thanksgiving/Christmas are coming up soon, and after such a miserable year of fear and cancer treatments, I was so looking forward to a joyous holiday season.

Autumn_Puzzle

“Florence” by Eric Dowdle (Dowdle Puzzles, 500 pcs, dowdlefolkart.com but purchased at Costco): I missed visiting Florence during a European trip due to scheduling conflicts, but it remains one of my most-wanted cities to tour. Seeing Michelangelo’s David in person is on my bucket list! I particularly liked that this puzzle came with a little poster of the image that made putting it together a serene pleasure. The last thing you want is to get headache trying to match up teeny windows!

Florence_Puzzle

When Deep Breaths Don’t Calm

It’s an obvious understatement to say that getting cancer is stressful.

My treatment plan involved a lumpectomy first, then chemo and radiation, but just getting to the surgery wore me out emotionally. I’ve written before that I’d never experienced anesthesia before, certainly never had major surgery…and add to that, the surgery would confirm how far my cancer had spread so I was apprehensive about the whole thing.

Suffice it to say, I didn’t handle this process well. Two weeks prior to surgery, I had begun a mindfulness meditation practice at the suggestion of my radiation oncologist. This was a life-changing step for me, but I hadn’t had enough experience with meditation for it to truly benefit me as I was sitting in the “ready room”, waiting for my surgeon. I knew I had to breathe, but it was hard to focus when I was terrified.

The “breathe deeply” mantra was repeated by a number of nurses, probably because I looked like a wreck. I can honestly say that breathing deeply, as hard as I tried, didn’t work. Months later, I came across an article (and unfortunately, I cannot recall whom to credit for this) addressing this issue. The problem with focusing on the breath during periods of extreme anxiety is that the breath is most obvious in the center of the body. You know, right where your racing heart is. I couldn’t separate out the two, and as I was trying to slow my breathing, I was acutely aware of the pounding in my chest.

So, here’s the advice that I would give now: find a comfortable position and focus on your hands. Feel into them and focus on any sensations present in them. Fingers are sensitive, so it’s likely that you’ll feel something. Is there tingling there? Are they numb?What’s the texture of the material that they’re resting against? If you feel nothing, rub your hands together and focus on those sensations.While this type of meditation (essentially a body scan) is often done with eyes closed, depending on the individual and how frightening the surroundings are, it might even work better to keep the eyes open and look at the hands. But really look, so that you draw your attention away from the beating heart, and then gradually try to slow your breathing.

The idea is to keep your attention away from parts of the body that remind you of how anxious you are.

I can’t say that I would have completely relaxed had I known to do this. I had been dealing with runaway anxiety for the past weeks that my rudimentary meditation had only begun to chip away at. But it’s possible that I would have gotten myself into a more comfortable state as I waited for surgery. Definitely worth trying the next time you find that a breath focus doesn’t help with anxiety.

What’s All This, Then?

“If you want a happy ending, that depends, of course, on where you stop your story.”

Orson Welles
director, actor and producer


Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.

I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.

Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.

Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.

So here are my facts:

In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.

I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”

It’s going to be a bumpy, unpolished ride. Bear with me.

Reprocessing Cancer

My parents are owned by a Siberian husky (if you’ve ever lived with a husky, you understand). She is spoiled beyond belief and loved beyond measure. But no matter how much she’s allowed to get away with, she still needs baths and getting her into the bathtub takes cajoling, muscle and a healthy dose of determination on the part of the two human seniors. This is no small feat since the love that my parents and their circle of friends showered upon her has resulted in making the husky, well, even more husky (she’s currently on a weight loss journey). But once she’s been bathed and toweled off, our husky does something curious: she always returns to the bathroom to sniff the tub and faucet, as if she’s trying to make sense of what happened to her.

I find that I’m a lot like her. You would think that after the anxiety associated with my cancer diagnosis, the fear of the treatment and having to endure chemo and radiation, plus a year of Herceptin infusions, I would want to stay as far away as possible from anything cancer-related. In the beginning, that was the case. References to cancer seemed to be everywhere I turned, and I struggled to avoid the thought of it. I was terrified by the ambiguity of my situation.

But now that treatments are over, I find myself drawn to cancer information. MW/MSW (my clinical counselor) calls it reprocessing, as I explore how I’ve been affected by this journey. I run the gamut from viewing it as the most traumatic thing that’s ever happened to me, all the way to the biggest blessing I’ve ever received. That’s a pretty wide spread! The more daylight that comes between my final treatment and my current place in time, the more curious I become. Cancer is no longer the “big C” for me, it’s a word in lowercase. It’s as if I’m dipping my toe into the lake where I almost drowned, and slowly moving deeper, determined the tread the waters with me in control this time. Not like the crazy roller-coaster ride that I had the first time.

Things are different now. Not only do I have perspective, but I also have a sense of peace through mindfulness. The impetus to begin a meditation practice was one of the gifts I got from cancer, and it has affected every aspect of my life. I have rediscovered yoga. And I sport a cool, edgy hairstyle that I would have never had the guts to get on my own. Cancer is a familiar concept now, and I want to know more about it, want to understand what happened, how I can prevent it from happening again, and how I can help someone else newly embarking on that journey.