The Long And Short Of It: Hair Through Chemo And Beyond, Part 2

Part 1 of this series chronicled the loss of my hair to chemo and subsequent gradual regrowth through the end of 2017. Part 2 is the “beyond” part of “chemo and beyond”. These photos are somewhat self-indulgent because, well, hair does grow and so whether I’ve got short bangs or spikey hair doesn’t really have anything to do with chemo. Nonetheless, I wanted to provide some perspective regarding how long it takes until a cancer survivor’s head doesn’t look like a cancer survivor’s head.

I need to stress that these photos were originally taken so that I could monitor my progress, not with the intention of posting them for all to see, so the quality may be lacking.

February 6, 2018: I didn’t take photos for a number of weeks — probably because once I was convinced that my hair was growing in properly, I mellowed out about scrutinizing my scalp. This was my general look into the early part of 2018, a hat that showed the longer growth (around the back) but hid the painfully short hair on top. I had my very first post-chemo haircut in February.
February 17, 2018: This is after that first haircut. I got a trim around the ears and back, but the hairstylist left the top alone — good thing since it was still really short. I started venturing out without a hat. It was amazing to feel the breeze in my hair!
March 29, 2018: I loved this stage and got a lot of compliments about this look, in part because the hair on top was incredibly soft (all new growth!) and touchable.
April 24, 2018: A view from above showing how full the regrowth was.
April 24, 2018: A front view of the same stage.
May 19, 2018: Now we’re getting somewhere! The hair is noticeably longer and showing more weight.
June 27, 2018: The hair is getting unruly. Need a haircut soon!
August 17, 2018: This marks a little over a year after my last chemo. I got my second haircut in July, and this was the first trim on top. This was another stage that I really liked even though it had a mullet-y feel. I was channeling Rod Stewart here.
August 17, 2018: A view from the top. There was more color creeping back into my hair and it was feeling very substantial.
November 19, 2018: Fast-forward a couple of months. After some more growth, I went for my third haircut. The hairstylist was distracted and did a major chop job on my hair. A bad cut always sucks, but when you’ve gone through chemo, it’s even worse.
January 11, 2019: Almost two months after that last cut, the lack of symmetry was obvious (combed out for effect here); she had chopped off more hair from one side than the other. I waited to let it grow more so that the new stylist (not going back to the old place!) would have more to work with.
January 16, 2019: Finally, went to a highly-rated salon (should have gone there in the first place, but…) and got a cut I love!
January 17, 2019: I can spike it for a seriously edgy look, or keep it tamer so that I don’t freak out everyone at work.

And so ends this journey. What my hair looks like now is vastly different from when I began with my cancer diagnosis, but as I’ve said previously, I am not the person inside that I was before, and now my outside reflects that. After a year of treatment followed by a year of regaining my footing, I’m edgier and willing to push my boundaries. Cancer didn’t give me a choice but to move forward, and that’s what I’m doing.

Index Published

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!

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 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.

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. 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 hoping to see 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. Wow, I have huge pores!
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 my head? I could blind someone with that!
October 11, 2017: Yes, this photo was taken only 5 days after the one above it, but I was starting to get desperate and taking loads of photos. 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!” Family members enjoyed patting my head and cooing.
November 2, 2017: Almost three months after finishing chemo, I still saw light glinting off the front of my scalp. 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 covers 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.

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.

“Relax, it’s only Ebola.”

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.

Invisible Effects: Libido, Where Art Thou?

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.”

Emotional isolation is a real possibility following cancer treatment if you’re not communicating effectively with your significant other.

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.