December 2018 – Frantic Shanti

Invisible Effects: Body Image, Part 3

In Part 1 of this series I wrote about breast loss (which I ended up not having to deal with) and how strongly I equated breasts with being female. In Part 2, it was about my fear of having no control over my body and being susceptible to weight gain as a cancer survivor.

In Part 3, I’m writing that my body reacted in a way completely opposite of what I feared, and I managed to regain some semblance of control.

As mentioned, many women with breast cancer, particularly those whose tumors are hormone receptor positive like mine, put on weight. On top of the “my-out-of-control-body-is-killing-me” feelings brought about by cancer, the threat of runaway weight gain added to my frustration.

Yes, this was another example of how, throughout my fact-finding research, I took to heart what I read and immediately assumed that if it happened to others, it was also going to happen to me. Except that it didn’t. Just as how statistically I shouldn’t have gotten breast cancer, I also shouldn’t have ended up almost 10 pounds below where I started pre-diagnosis.

My body is quite reactive. If you’ve read my posts about how I respond to anxiety, you know that I shed weight quickly. I am not an emotional eater; I am an emotional non-eater, and more often than not don’t have to fight cravings. I have to fight a lack of appetite

As weird as this may sound, the resulting weight loss was one of the strongest indicators that I wasn’t completely out of control, that my body hadn’t completely turned against me. And more than that, it was another reminder that my situation was not typical. So by maintaining a very doable 6 day/week workout schedule, I broke through the mentality that what others experienced was necessarily what I would.

Right side of my ribcage. I can see my serratus and external obliques, but have to focus on building strength, not losing weight.

In addition, and arguably more important is the fact that cancer recurrence and episodes of lymphedema have been associated with higher weight levels (see this Susan Koman web article addressing this issue, including journal references). According to a bioelectrical impedance analysis (BIA) body fat monitor, I’m sitting at about 20% body fat. The actual number doesn’t really matter, since these monitors are notorious for being inaccurate. What matters is that those numbers are stable and that I’m able to build muscle.

What also matters is that with my level of activity both pre- and post-diagnosis, recovery has been quite good. I feel strong. I feel lean and fit. My sense of self-efficacy is high. And I’m finally able to exhale after holding my breath about all the things that were happening to my body.

Piece by piece, I’m reclaiming my physical self again. At that same time, I’ve still got a lot to sort out in my head. I know that keeping my body fat in check doesn’t mean that I’m protected from cancer, despite what numerous news reports suggest. It makes me uncomfortable being bombarded with that message, though. According to the December 20, 2018 National Health Statistics Report (Fryer et al. (2018)), the average woman in the U.S. is obese. In the interest of public health, the “lose weight” message is trumpeted constantly. Every time I’m exposed to that, my perfectionism kicks in and I have to fight the urge to clamp down on my fitness and nutrition.

Being an outlier doesn’t gain me much sympathy, and it does comes with its own challenges. In the process of sorting out everything that’s happened to me, I’m working to keep an even keel going forward and not go to extremes. As with everything, moderation.

Invisible Effects: Body Image, Part 2

Oddly enough, one of the things that scared me about cancer was that it threatened all the work I’d put into my body. Being a bit under six feet tall since my teenage years, I was called “big” a lot whether or not I was overweight. At 16, I went through a phase of disordered eating. That passed, but I retained a sensitivity to how I was perceived by others. Always, I was fearful of being judged, and that pushed me towards perfectionism.

Fast-forward to 2017 and my diagnosis. When I started researching breast cancer, one thing that struck me was that the information I found didn’t mesh with my conception of what cancer was, in terms of what the treatment did to the patient. I had always thought of cancer treatment as having a wasting effect on the sufferer. But then I read of the propensity that many breast cancer patients had for putting on excess weight, not only throughout chemo, but also due to taking estradiol-blocking medications like Tamoxifen.

Wait, what? Gaining weight? But I’d always thought that cancer patients lost weight! Sure enough, google “breast cancer weight gain” and you get a lot of entries from reputable sources that warn about this tendency to pack on weight. My Nurse Navigator echoed that point, noting that many women “put on 10-15 pounds.”

Many decisions in my life have been motivated by a fear of being judged.

This provoked a lot of frustration. I had established excellent diet and fitness habits for the very purpose of building strength and endurance and avoiding the weight gain that accompanies advancing age. I had kept emotion out of my food choices (kudos to my mother for being careful about not connecting food and emotion). During my time as a stay-at-home-mom, I’d obtained a highly-respected personal trainer certification because I wanted to be sure I knew what I was talking about. My standards were high, but even if I couldn’t attain my version of “perfection”, I put in 100% effort and that made me feel good.

And then, cancer. Despite doing everything I could think of to maintain peak health, I still had not been able to prevent the development of my tumor. That was extremely unsettling. But for me, having my whole body shape change as a result of this was almost worse.

Predictions of the future raced through my mind: I was going to lose my lean mass, lose my fitness and put on ten or more pounds. I would be judged for “letting myself go”. None of this would be under my control. Just like the cancer, it was all happening to me, and as far as I was concerned it was bound to ruin my life, whether or not it actually killed me.

However, as with so many other things related to my cancer, this didn’t go the way statistics predicted. And that’s why there’s a Part 3 to this body image series…

Invisible Effects: Body Image, Part 1

This is going to take several posts to get through. Body image is a dicey subject for me.

First of all, let’s talk breasts. Mine are not very big to begin with. Okay, they’re teeny. That usually doesn’t bother me although there have been times that, standing 5’11”, I’d wished that I’d had a more sizable bustline. Most notably, this was when I was toying with the idea of competing in fitness-based figure competitions; ultimately, I decided to stay away from the extreme dieting and arbitrary body judgments that came along with these contests.

Regardless, breasts were an important part of giving figure competitors an attractive, balanced look. But at such low body fat levels, breasts were collateral damage. So what the dieting took away, silicone gave back. I found this odd because no matter how hard these women worked to achieve the “perfect” physique, according to the judges (and society) they couldn’t pull it off without something artificial. We have a powerfully ingrained notion that breasts = femininity.

I hadn’t realized how much I bought into the notion that I needed breasts to define myself as “female”.

When I learned that I had breast cancer, one of my first thoughts, right after, “Am I gonna die?” was, “Will I lose my breast?” The diagnosis left me empty, but thoughts of disfigurement drained me even more. There were different possibilities for surgery, different conditions under which I’d lose more or less breast tissue. And they were all stressful. I mean, I had little breasts, but they’d nursed two children into toddlerhood and I was remarkably attached to them.

And if I needed an entire breast removed, would I opt for reconstruction? Is there even such a thing as an AA cup implant? Or would a larger implant push me into getting the other side done too, for the sake of symmetry? As you can see, I was wading into excessive-surgery territory.

Finally, if I didn’t get reconstruction, would I get freaked out by a flat ribcage where my tiny-but-now-incredibly-important breast had been? Furthermore, would my husband, accepting and loving as he was, be turned off by a missing breast?

True to form, I had died a thousand deaths before finding out that I could get by with a lumpectomy. And because of the small size of the lump and where it was situated, close to my armpit, it hardly changed my breast at all (as noted in my post about breast changes). So all the worry was for naught.

But many women have not been so lucky. Emotional aspects of breast loss, reconstruction, lack of sensation and societal pressures are not discussed nearly enough but can have a powerful impact on the psyche of cancer survivors. And this drives home the point that cancer is complicated far beyond the cold, clinical elements of treatment choices and survival rates. Breast cancer gets at who we have been taught that we are as women. Re-evaluating that, and possibly re-examining it as a society, will take a lot of work.

Invisible Effects: Bring On The Waterworks

While I’m exposing all my post-cancer psychological quirks, I might as well write about this one. Technically, this is not an “invisible effect”, but the emotions are, so I’m taking a little liberty with the title.

I cry. And I mean, like over almost nothing. I choke up over the smallest kind-of emotional thing and in situations where tears are not merited.

While tears are often considered another aspect of the anxiety/depression complex, in this case, my propensity to cry seems to exist in isolation from definite psychological states, which is why it deserves its own post. My emotional highs and lows cross the tear threshold more easily. And it really doesn’t have to be something terribly sad or unbelievably touching…it just has to be a standard deviation or two beyond neutral.

I am much more sensitive than I’ve ever been. Yes, it’s been a rough couple of years since my original diagnosis in early 2017, but right now I feel as if I’m teetering on the edge of exhaustion and have no resistance to an outward demonstration of emotion. The end-of-year holidays are notorious for stirring up deep emotions and feelings of overwhelm, so I’m sure there’s an element of that chipping away at me too. But this didn’t start with Christmas preparations.

Oh look! A puppy playing with toilet paper. *starts bawling*

Who knows what sort of residual effect the chemotherapy has on me? Combine that with any weird hormonal fallout from the Tamoxifen, which is blocking estradiol receptors in my body, and throw in some menopause, which I’m heading towards both pharmaceutically and naturally. I guess tears are to be expected?

I try my hardest to remain mindful of what I’m experiencing and not dissolve into a puddle in public places, but this may be an indication that I’m not doing a great job of “making space” for my emotions. Everything is RIGHT THERE in my face. My buffer is very thin and that doesn’t give me much room for observing my feelings impassionately.

I’ve read that many people feel more emotional even months (years?) after completing cancer treatment. But…really? I am bowled over by how much MORE there is to cancer than the cancer! It seems like the back end of this disease is just as complex as the front.

And I’ve got a load of empty kleenex boxes to prove it.

Addendum to Anxiety

I am just coming off a bout of particularly intense anxiety, so this is a good time to write an addendum to my last post. This episode of anxiety was striking in its intensity, hit me much harder than I expected and took a lot more out of me. The trigger was something that happened to someone I love, so I had no control over it but felt all the emotional pain.

It’s now been almost a week. Intellectually I’m over it but its physical effects linger and threaten to pull me back in. This is a change from the past because I used to be able to shake these feelings more easily. Now anxiety casts a long shadow that remains after the worst has passed. I get flashes of the stressful event and I re-experience that despair.

As it did with my cancer diagnosis, my weight plummeted over the past week. The reason: my reaction to anxiety is in the gut and intestines. A cold, tight, miserable feeling — emotional pain made physical. As days go by and things seem to fall back into place, meditation grounds me and staying mindful keeps me focused on the “now” and not ruminating on what has happened. But while I can calm myself, the physical effects of the nausea hold on.

That nausea, then, serves as a reminder of the event and re-triggers the anxiety. In times of distress I fear eating because the nausea is even worse with food in my stomach. But not eating weakens me and increases the sense of agony. This transitions into a depression of sorts. Quite simply, at this point I can’t win.

What causes even more anxiety is the link between stress and inflammation, and thereby inflammation and cancer. While I’ve been assured that it’s not the case, there’s a part of me that still implicates stress in the proliferation of my cancer.

As my weight drops I am reminded of that same fear I felt after my diagnosis, that the drop in weight would worsen my outcome because I still had to go through chemo and its effects. So all that fear is concentrated and deep in meaning. One event triggers multiple memories.

This seems like an impossible situation. Anxiety brings worries of cancer, which cause more anxiety. I’m afraid of being afraid. Doesn’t that sound ridiculous?

The cycle runs its course as time passes. The intensity fades. Slowly I regain my emotional footing, but I’m still attached to the expectations I had before the event that triggered this anxiety. Those expectations will eventually transition into a new reality, but until I am truly able to practice non-attachment, I am destined to repeat this.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way. Dr. Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment.

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.

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.

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.

Invisible Effects: Chemo Brain

Ah, chemo brain: the eater of thoughts. I should note that what I’m experiencing might not just be the effects of chemotherapy messing with my brain cells. This could also be influenced by the estradiol-blocking drug Tamoxifen that is forcing me into menopause before my natural time, or it could simply be the menopause “fog” that women complain about. So I don’t know exactly what it is, besides being infuriating.

I lose thoughts in an instant. Sometimes I actually “see” them disappear in the distance. It’s such a weirdly tangible sensation. I can try to grasp at their coattails and occasionally I’m successful in latching onto the thoughts and pulling them back. Other times I need to stop and walk back through my thought processes to retrieve them. And then sometimes they’re just gone. My desk at work is covered with post-it notes as a testament to what’s going on in my noggin. If there’s something I need to do I need to write it down NOW, and it’s not unusual for me to lose the thought as I’m in the process of getting something to write it down on!

This is what a walk down my memory lane looks like.

I can juggle up to three things in my mind at a time if I keep repeating them over and over again and work to maintain focus. Any more than that and it quickly crosses into the realm of hopelessness — it’s like knowing how to juggle three balls but if someone tosses a fourth at you, they all crash to the ground.

Then there are those chunks of awareness that disappear. It may simply be distraction and losing focus, but it feels like a hiccup in time that I don’t notice until it’s happened. It’s that “huh?” feeling as I return to present time when I realize that I’ve been gone for a second or two.

More disconcerting is a strange myopia that prevents me from reacting normally in a familiar situation. For instance, several months ago I treated a red light like a stop sign, and this was a familiar traffic light in my neighborhood that I’d been through many times. I briefly stopped at it, then drove through it. It was a “T” intersection that’s not terribly busy, but I did get shocked back to reality by the angry honk of a car that had the green and was probably wondering WTF I was doing.

The bottom line is that I’m distractable beyond belief. My train of thought gets derailed before it even leaves the station. The first time I noticed this, my oncologist ordered a brain MRI, way back in February. Nope, couldn’t blame it on a brain tumor — it’s just chemo brain.

This feels demoralizing, especially since my memory used to be so good. I lament losing all those awesome thoughts and ideas. And I know they were awesome because I remember having them — I just can’t recall exactly what they were. Yeah, there will be more, but I better have a notepad nearby to write them down. I even had a better ending for this post, but, you know…