Normality – Frantic Shanti

Thoughts On Random Twinges

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.

About That Boob Job…

Not gonna happen.

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.

“Bummer about your cancer diagnosis, but at least you’ll get a nice pair out of it.”

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.

Those who do choose reconstruction may still have a host of other issues that they have to contend with (see the Healthline article: “No One Talks About the Emotional Side of Breast Reconstruction”). So it’s not all wine and roses and Double-Ds.

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 Didn’t Expect THAT: So.Many.Pills

I figured that there would be a lot of medication involved with cancer treatment. I just didn’t realize it would be THIS much.

I am not a big pill-taker. Besides vitamins here and there, the only thing I’d taken with any frequency had been ibuprofin, and that was only for menstrual cramps and knee pain. But then came breast cancer.

First there was Xanax, so that anxiety from my diagnosis wouldn’t cause me to lose too much weight before starting chemo. Then there were meds post-surgery: I took half a pill of generic Vicodin before switching to ibuprofin, fearful of taking anything for too long. But with chemo, I needed steroids for before/during/after to get me through the infusion’s worst effects. Then there was the chemo itself, and additional IV drugs to prevent an immediate reaction. The day after each infusion, I went in for an injection (Neulasta) to help bring my white blood cell count back up.

MyMedications — Some of my medications. Just looking at them made me feel sicker!

There were drugs to help deal with side effects. And then other drugs to handle the side effects of those drugs. I had more pills with my name on it than I’d ever had in my life. It was terrifying to me. I’d gone from being a remarkably healthy 50-something to (what felt to me like) a seriously ill patient with a life threatening disease.

In all honesty, most of these drugs I didn’t even take. While I did need the Xanax, I worked hard to reduced the dose until I parted with it completely. In its place, I meditated. After the first infusion and some unfortunate confusion regarding which anti-nausea pill to take first, resulting in one of the roughest nights of my life, I switched to CBD (cannabidiol) oil to prevent vomiting. Initially this required experimentation, as research in the area is relatively young due to an evolving legal landscape, resulting in lack of reliable dosing guidelines. But once I got that down, CBD eliminated the need for a myriad other medications because it didn’t have side effects.

Even the Claritin, which I was told to take for bone pain commonly associated with the Neulasta shots, was unnecessary. I took it for a while until I realized that I wasn’t experiencing significant pain and could do without it.

Limiting medications that weren’t completely necessary didn’t have negative physical effects and, even better, benefited me psychologically. I was constantly striving for normality, and that doesn’t come easily with cancer treatment. Pill-popping was an unfamiliar concept for me, so getting back to where I felt comfortable, taking as few medications as I could safely tolerate, was critical.

Unfortunately, I’m not quite done yet. The toughest part is over, but the last chapter of my pill-taking experience includes a decade of the estradiol-blocking drug Tamoxifen. It’s a single pill I have to take on a daily basis to reduce the chances of cancer recurrence, and I deal by looking at it as an excuse to hydrate before getting out of bed every morning. Drink a bunch of water and, oh, slip that pill in there too.

I wish I didn’t even have to take the Tamoxifen. But it is what it is. I’m looking forward to the day when I can be completely pill-free, and trying to appreciate that after everything I’ve been through, there’s only one medication left.

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.