Since there are quite a few blog posts on this site, I’ve published an index to make navigation simpler. The index not only links to individual posts, but also provides a short description of what they’re about for anyone who wants to explore what I’ve written but can’t make heads or tails out of my post titles.
I’ve also cleaned up the menu a bit to make it easier to access the “I Didn’t Expect THAT” and “Invisible Effects” post series, in addition to the aforementioned index.
Future housekeeping is forthcoming. Thanks for reading!
It’s been almost a year and a half since my last chemo infusion. This past week, I treated myself to a chic haircut at a real salon (instead of going to a cheaper chain hair-cuttery) and I’m so delighted with the result. I reflected on what it took to get here, hair-wise, by going through the photos I took of this whole experience. This post series chronicles my cancer journey as witnessed by my scalp.
Please note that these photos were taken for my own records, without the expectation that I’d be posting them online, so I apologize for the quality.
I am getting my hair cut today, but this is no ordinary trim. After losing all my hair to chemotherapy in 2017, I find myself in a completely foreign realm: short hair after a lifetime of long locks.
Losing my hair was like losing part of my identity. We’re used to bald men — it’s even hip to shave your head as a man. But bald women are seen as oddities, because our hair is tied to our perception of beauty. A woman with no hair is perceived as an oddity — something is wrong. You’re sick.
So hair regrowth took on a particularly important meaning for me after chemo. It wasn’t simply that I finished treatment — I was reclaiming myself. My first haircut, in February 2018, when my ends were getting unruly, was terrifying. I hated the thought of cutting what I’d “worked” so hard to regrow. When you’re a cancer patient and hear horror stories about permanent baldness, getting hair back is not taken for granted. I didn’t finally exhale until I saw little sprouts at the front, and that didn’t happen until about November 2017, three months after my last chemo. I had no idea that it would take so long for my entire scalp to wake back up.
Now, almost a year and a half after chemo, I still look so different from the pre-cancer me, and I get a shocking jolt every time I see my reflection. It’s me, but it’s not me — I guess it’s the “new” me. I’m different and there’s no going back to who I was before. Sometimes that leaves me feeling lost and disoriented.
My husband feels similarly. Cancer affects those we love too, and as I struggle to define myself, he works to understand how I’ve changed. As I’m not familiar to myself, I am also unfamiliar to him. While it’s true we all change as we age and are not the same people we were when we met, normally those changes are slower and we have some control over them. But cancer is the hurtling locomotive that plows through your life and tosses everything you’ve known to the sides. Cancer forces you to pay attention.
So I’ll march into the salon to delve into new-short-hairstyle territory and put on a brave face to make cancer recovery into a positive experience — one that I didn’t ask for, but here I am anyway.
It won’t come as a shock that I’m so grateful to have cancer treatments behind me. While it’s true that the ‘me’ in the mirror still looks so different from the person I used to be, memories of cancer slowly fade into the background as concerns about current life take precedence. The more time that passes, the more likely I am to think that treatment wasn’t that bad. Hey, maybe parts of it were pretty good?
Nothing shocks me back to the frigid reality of cancer like an unexpected flash of pain in my breast. I don’t mean those post-surgery “zingers” that I was warned about. Those I’ve gotten used to and consider familiar. The ones I’m talking about feel different. I stop breathing for a second, trying to define the sensation.
I feel stupid forgetting how nasty a beast cancer is. These pains throw me into high alert. It’s an unpleasant sensation, because it transports me back to an uncontrollably dark point in my life. I’m so mindful and present in the “now” that it’s almost too intense.
Then the pain stops. Um, okaaaaay?
These are sensations that someone who’s never gone through cancer would consider to be weird annoyances. But to a former patient, they mean something else. I’m primed to worry about anything new, no matter where it is.
Twice so far, I’ve experienced a sudden weakness in my arms. Both times it was in the morning not long after rising. My arms felt heavy and uncomfortable. This is not normal. It’s worst for about a minute and then gradually disappears, but my focus on it is so sharp that I’m not sure if it’s really gone even after a half hour, most of which I’ve spent googling “sudden temporary weakness in both arms” and getting unsatisfying results.
Incidentally, not a single one of those search results mentions cancer.
That echoes what my oncologist said: “You know, it doesn’t have to be cancer.” Yeah, I know, but in my mind the Big “C” still seems like the scariest bully on the block. I shudder at the thought of another round of treatment.
Clearly, things have gotten weird when you read that your symptoms might be due to ischemic stroke — and breathe a sigh of relief.
The funny thing about telling people that you have breast cancer: their eyes always seem to glance down at your chest, as if they’re thinking, “Wait, are those real?”
Our society puts a lot of value on breasts, way more than just as vehicles for nourishing our young. As a dedicated breastfeeder of two children, I was surprised by how many women admitted to me that they wouldn’t breastfeed because they didn’t want their breasts to sag.
There’s also this weird assumption that a woman will jump at the chance to “improve” her breasts; in the case of a breast cancer patient, hey, congratulations, you get “free” implants! YAY! After I related my diagnosis to a male friend, he noted that finally my husband would get the C-cups that he’s always dreamed of.
Stop. Go back and re-read that last sentence. It was my breast cancer, but my husband would “benefit” from it too. Yay.
If you’ve read about my breast cancer experience, you’ll know that a mastectomy was unnecessary because my tumor was small enough to require only a lumpectomy. My recovery from surgery was short — I was back to work the following week.
However, my insurance would have covered removing far more breast along with reconstruction. None of this, as far as I’m concerned, would have been medically justifiable, but there was the expectation that breast cancer equals boob job, even when studies have shown that survival outcomes are not improved by complete removal of the breast when only a lumpectomy is indicated (for example, Fisher et al., 2002), and there are far more complications that can arise from the multiple surgeries necessary for reconstruction.
This, of course, was my personal preference. To be fair, I know a number of breast cancer survivors who had no other option than a radical mastectomy. That in itself is traumatic, so it’s perfectly understandable why they would want reconstruction in an effort to regain whatever normality they could. As I wrote in Body Image, Part 1, like it or not, breasts do define us as women. You can argue whether or not that sets women’s rights back (“I am not my breasts”) but I feel that when it comes to cancer, all bets are off. Breast cancer survivors deserve a lot of leeway in making decisions about whether or not to reconstruct.
I didn’t need a complete mastectomy and thereby did not augment my tiny breasts even though I could have. For me, this was not a matter of “looking better” or “taking advantage” of the situation the way others suggested I should. It was about maintaining the greatest degree of normality, getting though the experience and trying to get on with life.
I was warned about this. I mean, where do you want to start counting the reasons for libido to take a hike? Anxiety of a cancer diagnosis, fear of losing breasts (the societal hallmarks of femininity), chemotherapy (which pretty much kills everything), tamoxifen (blocks estrogen, so there go the hormones)…
Out of all the things touched by breast cancer and its treatment, this is one of the most personal that not only affects the patient but also the one you love, because it throws a monkey wrench into your relationship. As with many of these “invisible effects” of cancer, this one is not discussed enough, but really should be.
A marriage that is strong should survive this. A marriage that is new or rocky may take more damage. Married your wife mainly because she had long blonde hair, lovely breasts and looked good in your Porsche? Uh-oh. Stories circulate about the high percentage of divorces that result from lack of adherence to the “in sickness and in health” part of marriage vows. I’ve read that those statistics are inflated, and yet, it’s hard to ignore confirmed instances of, “he didn’t find me attractive anymore,” or “she no longer wanted to have sex with me.”
In my experience, all the effects of cancer dropped onto your libido won’t necessarily squash it into oblivion. But they do add a degree of difficulty in maintaining intimacy. There is nothing normal about having cancer, and so it’s not surprising that it wrings the “normal” out of a marriage. Communication is critical, and if things are going to break down, I think that’s where it’ll happen.
It’s not that there wasn’t desire throughout my cancer treatment. It’s that it was hard to Tetris sex into the chemo schedule, when I was dead tired and feeling like the lining of my GI tract had sloughed off. Hubby was taking care of the kids and I was lucky if I could make it to the toilet by myself. Perhaps desire was there, but any available energy was better utilized for self-care.
Chemotherapy left me feeling very “neuter”, in that gray area between female and male. Being scrawny and bald didn’t help. I didn’t look feminine and felt even less so. My reality was fuzzy, as if I had one foot in this world and one in the next, which wasn’t the greatest recipe for firing up desire. We went through about a year of unintentional celibacy and that took a lot of discussion to patch up.
Now in survivorship, sexual intimacy has taken a backseat to the rest of life. I mean, I’m still alive, so I’d better make the most of it, and languishing in bed is not where I want to be. I’ve spent enough time supine. Weekdays I need to get the kids ready for school and get myself to work. On weekend mornings, there are workouts to do, posts to write, meditations to finish, coffee to brew. If there are insufficient hormones to drive me into the arms of my beloved, then he’s left to get a few extra hours of sleep while I get on with life. Once in a while, we reconnect, but we’re behind the curve on this.
At the same time, intimacy is an inextricable part of a healthy long-term relationship. I am not giving up on finding my mojo again, but as with everything in cancer recovery, it’s going to take time.
In the midst of trying to avoid dying from cancer, and being fortunate enough to have health insurance, I wasn’t thinking about the cost of treatment. I couldn’t get past the thought of having cancer, the incoming test results and what my treatment options were.
But even with excellent insurance, there were a lot of expenses. Every doctor’s visit dinged us, as did every infusion. Surgeries (biopsy, lumpectomy, port placement) came with co-pays, some in the hundreds. A trip to the emergency room for an infected fingernail (thank you, chemo) was a few hundred.
Did I need this treatment? Yes! Do I regret spending this money? No! I received excellent care from my oncology team in addition to some amazing freebies that were offered by the cancer center, not the least of which was truly exceptional counseling. As someone with degrees in psychology, I feel that therapeutic psychological support during cancer treatment is an absolute necessity, and I was blessed to have an amazing Clinical Counselor. Additionally, the Nurse Navigator assigned to me had also been a breast cancer patient and was able to offer insight and support that I wouldn’t have been able to get from just anyone.
But once I got through the initial shock of my diagnosis, I had to start asking, “Is this covered by my insurance?” While some treatment was non-negotiable (surgery, chemo, radiation) there were things that I didn’t get (lymphedema compression sleeve) because a costs–benefits analysis suggested I could get by without them, and other things (genetic testing, 3-D mammogram) that I sprang for because they were well worth the peace of mind.
What saved us as a family was that there was an out-of-pocket maximum that limited how much financial damage we incurred. I consider myself unbelievably lucky because of that, particularly with two kids only a handful of years away from applying to college. Our savings did take a hit as the expenses piled up, but it was much, much smaller than it could have been.
I dodged that pricey bullet, but there are so many others who do not. The financial impact of cancer is not discussed enough. When I started researching the actual cost of all my treatment — not the fairytale insured version that I was so fortunate to pay — I was absolutely dumbfounded. The price tag topped $100k for my chemo alone! Going through treatment without insurance would have devastated us. Survivors go bankrupt over this.
Medical bills aside, there are costs to be incurred simply from lost work due to treatment and survivors may find themselves unable to work once treatment is over. Chemo brain has caused a great deal of stress for me as I face transitioning from part-time to full-time employment (a necessity due to the ridiculously high cost of living here). I am slowly learning to adjust to my lapses in concentration so that chemo brain does not pose a liability to the quality of my work. Mindfulness and meditation play a huge role in addressing these issues, as does moving towards a career that makes more use of my strengths and experiences, rather than simply looking for advancement in my current position.
I didn’t anticipate any of this when I found out I had cancer. I was so anxious about the diagnosis that the quality of my insurance didn’t even register. We thought we were ready to do “whatever it takes”. I mean, can you put a price on a life? And yet, can you plunge your family into debt with a clear conscience? These are painfully difficult questions with no good answers. It is unbelievably fortuitous that my husband had switched us to a more expensive insurance several years earlier, and heartbreaking to know that many others never had that option.
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.
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.
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.”
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…
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.
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.