September 2018 – Frantic Shanti

Lifting My Spirits

I received an unexpected but incredibly satisfying compliment today. It was from a worker at Trader Joe’s who made a flattering comment about my arms. A little background here: I like to work out, and even obtained a personal trainer certification when I was a stay-at-home-mom. While I’ve never trained people as a profession, I have maintained my certification over the years — in addition to a vigorous training schedule. I’ve been told that this is unusual for “a woman of my age”.

When I received my cancer diagnosis, I was shocked largely because in my mind my lifestyle didn’t seem to fit the profile of someone at high risk. One of my greatest fears as far as cancer was concerned was that it would affect my ability to train regularly. While so many people engage in eye-rolling when it comes to exercise — it’s popular to equate exercise with misery — having to take time off from working out was one of the most horrible outcomes I could imagine. My version of hell involves a sedentary existence. I train hard to enjoy my life, to be able to move and lift and not feel pain. I work out to live and that energizes me like nothing else. And anything that jeopardizes that is a death sentence to me.

Okay, maybe a little dramatic? But you get my point. I.Love.Exercise.

Today’s compliment was particularly poignant. During my 2017 doctor’s appointment to check out that suspicious lump in my breast, the doctor’s assistant commented that she wished she had my arms. I remembered that as I went through diagnostic tests and oncology visits and surgery. I followed my surgeon’s orders regarding not lifting heavy things (well, mostly, because “heavy” is negotiable), but as soon as that time limit passed, I was off and running. Exercise meant normality, and I craved feeling normal, as in “not sickly and dying from cancer”. There was mention of this nasty impediment to my life called lymphedema. I didn’t really think about it much until I was discussing lifting weights with my oncologist, who said, “Exactly HOW MUCH weight are we talking about here?” and sent me to the lymphedema specialists so that I wouldn’t go full-Schwartzenegger without knowing whether I was risking having my arm blow up. (It hasn’t so far.)

But my point: the compliment I received today made me feel like I’d come full circle. While, yeah, fear of death from cancer is a biggie, drastic changes to one’s lifestyle are also anxiety-provoking.

Today, I felt, I’m back.

Cancer As Divine Justice?

It’s disappointing that I feel the need to post this disclaimer, but I would be heartbroken if someone misinterpreted this post to suggest that people with cancer are being punished by God, the Universe or whomever, for something that they’ve done. THIS IS NOT THE CASE and this post is not to be twisted into a perverted view of divine justice. I hope that’s clear.

One thing that I’ve grappled with throughout my cancer experience has been the WHY of it. I don’t like uncertainty and when I looked at the risk factors associated with getting cancer, there was no reason why I should have been saddled with this disease. Yes, I realize that life is not fair, and that these things happen for reasons that we don’t understand. But when you’re in the thick of diagnostics and treatment plans and all that good stuff, you don’t think clearly. Ultimately, there is a reason, but science has not progressed enough yet to provide a definitive explanation.

So, when science can’t answer, we turn to more primal explanations. Being a Catholic, I couldn’t help but think that this was some sort of divine justice. You’ve heard of Catholic guilt? On some level, I carry around a lot of it, more than my share. It’s propelled me to be as exact as possible in all things. When a police car drives by, I fear that I’m doing something wrong. I follow rules. I don’t lie. I keep my promises and hold secrets close. I care, perhaps a touch too much. In effect, I drive myself up a freakin’ wall.

Things had been going well, physically. At 50, I was strong, fit, remarkably healthy and free from a lot of the ailments that many women my age complain of. I had no weight issues, no food issues, loved to exercise and was so happy about that. My lifestyle supported good health and longevity. But then – WHAM! – cancer diagnosis. Maybe I was too happy? Perhaps I was smug? Catholicism makes a big deal of intention, as in not thinking bad things. Whether or not this is actually practiced by members of the faith is a different issue altogether, but that’s the idea. So I immediately thought that perhaps I wasn’t humble enough about my physical state? Despite the fact that I had truly worked for it, avoided indulgences like sugar and alcohol, pushed through discomfort to exercise, maybe my thoughts had brought on some sort of divine anger, and cancer was going to put me in my place.

That’s what I thought. And YES, I am a well-educated individual who understands that mutations in the DNA occur frequently, and the body takes care of them. But mine didn’t, so any reason that seemed to make “sense”…

Even then, I am not so arrogant to garner the attention of a deity. These days, there’s quite a bit of that going around, and I couldn’t hope to compete with the obvious examples that we see in political and entertainment spheres. So it really doesn’t make sense that I would get cancer for that reason. In that case, was my confidence in my good health particularly egregious and insulting to a divine power that I would get singled out?

These are the kinds of thoughts one has in the middle of the night when one has mixed up the order of their anti-nausea medications while that the body is fighting the effects of being slammed by an elephant-sized dose of chemotherapy.

Regardless, the thought processes continue…

Maybe this went so much further than some kindergarten-style retribution? Another cancer survivor had related that the disease was the best thing to ever happen to him. In the middle of chemo, I had a hard time appreciating that. But as the end of treatment started coming into view, I began to grasp what he meant.

Of course, being Catholic, my head went to…maybe this is some sort of odd divine blessing? I have no doubt that God has a sense of humor. I imagined him being bored and seeing me through a break in the puffy white clouds and – ZAP! – I get cancer while he runs and hides behind St. Peter, giggling. So maybe I was being pranked, but in a loving, benevolent kind of way?

Truly, this cancer experience has given me a lot of direction, a sense of purpose that I had lacked. Admittedly, this is imbuing an unchecked genetic blip with a whole lot of divine power. But take the God-figure out of the equation and look at it again. Choose your interpretation. Some random mutation? Or an opportunity to redirect my life in a positive way that benefits others?

Isn’t the latter a far better choice?

WHY Did I Just Do That?

I had an off-kilter dream last night. I was driving a co-worker somewhere and racking up points on my license. I leaned the car on one side — two wheels — to pass someone, then drove up on the curb to get around someone else. My co-worker looked nervous. When we were caught in a traffic jam, somebody pulled out a raggedy paper wand (think Harry Potter, but looking like a curly tree branch) to show my co-worker, complaining that it was the best he could do. My co-worker handed it to me, and for some inexplicable reason, I ate it. Then the fellow wanted it back and I didn’t want to admit what I’d done, but by that time the traffic had started moving again, so I sped away.

There were now several of us, and because we needed a place to work, I led our group to a friend’s house. It was a really nice place! Since it was the middle of the day, my friend was at work, so we simply went in (home invasion, anyone?). There, I repainted part of the room we were in as we ate pizza. I think I broke a few things too, but managed to glue them together. Finally my friend came home and gave me a hug as I apologized for not calling her before breaking into her house. She was totally cool with it.

All the while, as I was doing these crazy things, I kept asking myself, “WHY did I just do that?” But then I’d go on to the next crazy thing as if it were perfectly normal, followed by another “WTF???” from myself. I felt guilty and out of control, at least in between committing these various crimes.

You know those dreams you wake up from and think, “Whew! Only a dream!”? I wreaked enough havoc in this one to elicit that response. I’m writing about this because that’s how I feel sometimes. Like I’m stumbling around doing things that don’t make sense, only to catch myself after the fact and wonder what I was thinking. Granted, the things I’m doing are not likely to put me in jail or get me committed. But I seem to lose focus and get lost in a crack between the reality of the previous second and the reality of the next one. It’s as if I enter another dimension for a split-second before pulling myself out of it and going on.

This, they (the proverbial ‘they’) tell me, is normal. A weird cocktail of chemo brain, tamoxifen and getting pulled into menopause a bit before my time. I am trying to navigate this “normal” and don’t quite know what to do with it. Eventually it’s gotta pass, right?

What Is Up With My Hair?

But let me back up a bit. My hair has been an issue throughout all of cancer treatment. As everyone knows, the hallmark of a cancer patient is a bald head. That’s pretty unmistakable. Being told you have cancer and waiting for test results is anxiety-provoking because — besides the obvious fact that you have freakin’ cancer — you don’t know the extent of your treatment. Being told you don’t need chemo is a huge plus. For me, this was because then I wouldn’t be a “full Monty” cancer patient, and my perception was that my condition would not be quite as serious as if I were going all in and having to undergo the full spate of treatments (surgery, chemo, radiation). The reality of this is debatable, of course, but for me, finding out that I needed chemo meant giving up hope of all normality. This wasn’t going to be like taking a prescribed medication. This was going to change me physically, and everyone would know.

I didn’t shy away from telling people of my diagnosis, particularly those who were going to see me on a frequent basis. I mean, who was I kidding?

I’d always had long-ish hair, but when it started coming out by the handful, the thought of leaving a hairy trail in my wake was unbearable. I entreated my husband to get the clippers and off everything went. My daughter was supposed to film the entire thing (I was bound and determined to record my experiences for posterity) but this whole episode was a little overwhelming and I started crying…and my sweet kid didn’t want to film a breakdown so she only took stills. I really wanted the video, but whatever. At least I had photos. My husband had fun leading me through an evolution of punk haircuts that allowed me to relive the 80s, but when it was all said and done, I felt better and promptly sent out the photos to close relatives. I got compliments on my headshape and was told that I had dainty elf-like ears. The world of cool Halloween costumes opened up for me.

And man, did I look weird.

So, for the next however-many months I was all about scarves and hats. I got used to always having something on my head because my dream of being the “cool bald chick” didn’t materialize. With my hair gone, I had a very good view of my scalp, and it looked terrible. I guess being a Northern European in a city on the same latitude as Morocco was not kind to my skin, and my scalp displayed the abuse it had suffered all those sunny, hatless days. I had some pretty incredible moles, and, look, I already had breast cancer – I didn’t want to have to deal with skin cancer too. My lid stayed capped.

Now, everything-hair was in a holding pattern until the end of my chemo. First of all, when you google “Taxotere” (one of my chemo drugs) and “hair”, the first entry that comes up is for a law firm that is planning a class action suit against the makers of Taxotere on behalf of all the women who suffered permanent alopecia after taking the drug. This is NOT what you want to see.

After all that, I was pretty impatient about hair regrowth. There is a small percentage of women who do not get their hair back, but it doesn’t matter how small that percentage is. When you’re holding your breath and waiting for your hair to return, you’re convinced that you’re part of it. To make matters worse, my hair had gone all white/gray so it was even harder to see. I gave in to the folly of reading about other women’s experiences with regrowth, and they all seemed to grow hair more quickly. Or not at all.

By this point, I looked like a cross between Yoda and Gollum, since a few crazy hairs had apparently not gotten the memo and decided to keep growing throughout my treatment. Not a lot, just enough to make my scalp look like it was undergoing an identity crisis. My eyelashes were still clinging for dear life, and I had high hopes of being able to emerge on the other side of this journey with some fringe around my eyes…but no. A few weeks after chemo ended, all but a couple of my lashes went the way of my eyebrows. Gone. Nothing quite like being hairless to make you look like an alien from a 70s sci-fi flick.

So I waited. I whined in my oncologist’s office, and cried in my counselor’s. I don’t have much faith when it comes to being patient and seeing how things turn out. My impatience was driven by fear. Every trip to the bathroom was another opportunity to stare in the mirror, trying to determine was that a shadow or a new hair? This was complicated by the fact that my previously excellent eyesight is changing and I’m not adjusting well to that. I forget to bring reading glasses and think that the world has just gone fuzzy, like that’s perfectly normal. To my glassless eyes, I still looked bald.

But at one point I was examining my forehead, where the hairs reeeeeally took their time coming in (what’s up with that???), and saw teeny translucent sprouts. Finally? Trip after trip to the bathroom mirror, squinting from every angle, the hairs were unmistakable. Yes, foreheads are great things, but I didn’t need so much of mine. And finally it was getting coverage.

Let’s fast-forward to now. I have hair. It’s white and I look like my kids’ grandma. But regardless, I have hair and that makes me so happy. Let me say it a few times: hair, hair, hair! And not only do I have hair, I have gravity-defying hair. It’s a few inches long and reaching for the stars. I use hair styling products with names like “taffy” and “putty” to keep it in place, but when I wake up in the morning I look like a Pomeranian. I didn’t even realize my hair could do that.

Note that I am not complaining. My eyelashes came back. My eyebrows didn’t, but that pulled me into the creative world of brow design. Once I got past the “my-brows-were-drawn-by-a-five-year-old” stage, I got into the look and expanded the rest of my make-up to balance my face out. In the end, I look more put together. At the same time, I don’t look like my old self. But perhaps that’s not so bad – I am not my old self inside, and that’s being reflected on the outside. Yes, sometimes I walk past a mirror and shock myself, but this journey has been transformative and I’m going to have to get used to that. As with everything, deep breaths.

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.

So, I’m Still Alive. Now What?

I spent much of 2017 focused on death and how to avoid it. When you’re smacked with a cancer diagnosis, time slows down. You only see as far as the next test results, holding your breath for a week at a time until you get news, followed by the next suggested steps. Your life becomes an “if-then” flow chart. Finally you get a concrete treatment plan, but that also limits your view of the future. Treatments are like stepping stones across a foggy river. You know the other side is out there, but you can only focus on the step in front of you, and for good reason. These are the most labored steps that you’ve taken since learning to walk. The process is exhausting, and wishes of “You can do it, you’re a fighter” are received with reluctance. Honestly, you don’t want to fight anymore. You want it to end.

Eventually it does. You’re done with treatments and have to deal with a future of ambiguity. The stepping stones then become scans and the space between them widens, allowing normality to seep in. Lingering side effects become fuzzy annoyances. Some days you forget you were a cancer patient. Having your hair grow back helps – a bald head is a constant reminder, but as the hair comes in, you look less chemo and more sporty. “Cancer” ceases to sound like a terrifying death sentence. Distance gives you perspective. You move forward.

And now…what? You are not the same person. Maybe it’s the fear and anxiety, maybe it’s the chemo drugs, maybe it’s the weeks of daily radiation, but something inside you is different. I describe it as a nagging urge to find a new dimension of life. Perhaps it’s another version of searching for my “why”, but it’s not a big leap to convince yourself that there was a purpose to your journey that goes beyond just the treatments. There is a feeling of inner wisdom that needs to be expressed. The most difficult part is figuring out how to do this in the time that you have left on this earth.

Exercise, Eat Right and Get Cancer Anyway

I need to get this off my chest (no pun intended), because it drove me absolutely nutso for a long time. As far as I was concerned, there was no reason whatsoever for me to get breast cancer, and a gazillion reasons for me not to. I had fantasies of taking the breast self-exam instructional card that hangs in our shower and running it through the shredder, flipping it off as it disappeared into the steely maw. That’s because on the backside of the card were guidelines to reduce one’s risk of getting breast cancer, and it was infuriating how anemic the suggestions were, as in, they were setting the bar pretty low: “maintain a healthy weight” (been doing that for a long time), “add exercise into your routine”, (are you kidding me? Strength training, rowing, the whole nine yards!), “limit your alcohol intake” (WHAT? I don’t even freakin’ drink!!!). Every time I looked at that card, I fumed. I had gone to great lengths to follow health rules to a T, always erred on the side of caution to the point of being anal about it. When my doc felt the breast lump that I pointed out to her–the one that I’d felt for a good six months but had not gotten checked out because I had no risk factors and I was always fretting about health stuff that turned out to be nothing and I didn’t want to waste the co-pay and the lump was probably going to go away on its own soon, blah blah blah–I was shaken by both her obvious concern and the warning not to put off getting the diagnostic mammogram done.

Obviously, things did not turn out as I’d hoped. Ergo, this blog…

Following all these guidelines touted to reduce your risk of breast cancer, and then being the one among all my relatives to get it was intensely frustrating. I was the health nut, the vegetarian, the exerciser, habits for which I’d gotten my share of ribbing. I spent a lot of time angry about this, searching for answers why. Maybe there was something I had missed? Was it the plastic straws? Contaminated toothpaste? Radiation from outer space?

Then there was the emotional fall-out, an effect of my perfectionist tendencies. I felt shame, as if I were being judged and people would think that I must not have been “following the rules”. Were they gloating at me? Other women who were not paragons of healthy living didn’t have cancer. But I did? I felt the need to explain myself, as if I risked getting kicked out of some “healthy persons’ club”. There is a popular expectation that the only time people my age exert themselves is when they’re chased by their neighbor’s pitbull. Or running down a Black Friday special. But to actively work at maintaining a healthy existence for the sake of maintaining a healthy existence and presumably a healthy future? Not the typical 50-something. I prided myself on being different and was free of health problems for years, but getting smacked down by cancer…that’s a pretty big one. So was all the effort and exercise and veggie consumption worth it?

Undoubtedly.

What helped calm my anger was looking at my situation this way: Would I not have gotten breast cancer if I ate meat? Or was overweight? Would I have been spared if I drank alcohol or smoked? Or led a sedentary existence?

While following all the rules and recommendations didn’t prevent my cancer, I can unequivocally say that it accelerated my recovery. And I do not for a second regret the effort that went into that focused mindset. Yes, I still wanted to feed the breast self-exam card to the shredder. Many times. But that’s because I forgot that statistics are great for defining populations, but ultimately they don’t matter when it comes to the individual. When you have cancer, your chance of having cancer is 100%. I wanted answers, but so does every cancer researcher out there. As my surgeon reminded me, “If we knew why, we could cure it.” And I’d be up for a Nobel prize.

So, I don’t know why. Of course, since I’ve mulled this over and over, I’ve got a load of theories, some more convincing than others. It’s part of my nature to want to know the why so that I can feel a sense of control over what is a very frightening disease. But I don’t have that. I do, however, have a determined nature and am happy to eat plant-based foods and find pleasure in exercise, and for the time being I will be content in that.

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.