The Long And Short Of It: Hair Through Chemo And Beyond, Part 1

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 photos of my hair. This post and the one following it chronicle my cancer journey as witnessed by my scalp.

May 13, 2017: My first chemo treatment was April 27th and just over two weeks later, my hair started coming out in handfuls. I had long hair so the loss was noticeable and very distressing. Time for it to come off!
My husband started by taking off the bulk of my ponytail first.
I got to live out all my punk hair dreams…
…and even spent a few minutes channeling Riff-Raff from “The Rocky Horror Picture Show.”
Finally it was done. No looking back! As miserable as it was losing my hair and crying through most of the head-shaving process, I now felt like I had a modicum of control over this whole crazy situation.
June 8, 2017: This was the day of my third chemo session. Oddly, my hair had actually grown but then seemed to freeze. If I pulled on individual hairs, they would come out easily.
Needless to say, I didn’t mess with them! While it’s not readily apparent in the photos, there’s way more bald scalp than hair there, with significant loss at the front.
July 3, 2017: Yeah, not looking so healthy here. Loads of the tiny hairs had given up and dropped out, and I was having issues with a dry, flaky scalp. Honestly, I hadn’t realized that it looked this bad until I saw the photo.
July 20, 2017: My scalp was confused. Some obstinate hairs continued to grow, but most hadn’t, giving me a great view of the horrible moles on my head!

August 18, 2017: My last chemo had been August 10th. There were only enough of these longer hairs on my head to make me look like Yoda, but without the big ears. Also, you can see the rough shape that my nails are in (but that’s a story for another post).
September 6, 2017: There were hairs on my head, but they were not really growing in. It had been a month since my last chemo and I was anxious about seeing significant signs of life. But, nope.
September 16, 2017: Here’s one of those never-say-die hairs. I was also noticing downy, baby-chick hairs but no appreciable coverage.
October 6, 2017: It had been almost two months since my last chemo, and I was convinced that I should be getting more growth. My hairs were super-fine and my scalp squeaked when I tried to run my fingers through them. See the light shining off the top of my head? (Sorry for the blurry image!)
October 11, 2017: Yes, this photo was taken only 5 days after the one above it, but I was starting to get desperate. I was convinced that I should be getting more growth than I was, and had spent too much time on cancer forums reading posts by women whose hair hadn’t come back at all (bad idea!). I was experiencing growth but their fine texture made it seem like there was very little there.
October 17, 2017: At this point, there was a mixture of sparse longer hairs and the super-soft fuzz, but the overall view still screamed, “BALD!”
November 2, 2017: Almost three months after finishing chemo, I still saw light glinting off the front of my head. I could wear hats because the back of my head had more hair coverage. Regrowth was happening in a sort of reverse male pattern baldness. There WERE little sprouts on the front of my head, but they were taking their own sweet time.
November 11, 2017: Finally! The hairs in front were definitely coming in. All the growth was soft and fine, but it seemed like the follicles had woken up. I found it easier to be patient now that there was definite promise of a full head of hair in my future.

Part 2 will cover hair growth through 2018…

When Is A Haircut More Than A Haircut?

When you’ve spent half a year hairless.

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.

I feel so…different. Maybe a new haircut will help?

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.

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.

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.

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…

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

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.