I can’t write about discolored and infected fingernails as a side effect of chemotherapy without throwing in some good news too. Not only did I document the sad state of my nails in photos, I kept taking pictures even after the ER visit. I wanted to see what the healing process looked like, something that can be difficult if you don’t have photographs to compare against. So what’s the good news? That which was nasty didn’t stay nasty.
(About the photos…I never intended to post these so they aren’t the greatest images, and I’m still a dork when it comes to working with WordPress, so I apologize for the weird sizing. Eventually I’ll figure it out.)
A week had passed since my infection had been treated (see previous post), I was still alive (a good thing!) and my nails hadn’t fallen off. My right hand, ignoring the battles of the left, was marching onward and away from chemo memories.
As I mentioned in my last post, I was wondering how much influence the vinegar and water solution that I soaked all my raw veggies in to clean them (per doctor’s orders!) had on the state of my right hand. It had spent much more time in that solution, at least several times a day, and didn’t show nearly the same amount of damage that the left hand had.
A week later, instead of nails dropping off one by one, the healing continued.
While nails do take a while to get rid of the damage they sustained, almost two months after the infection and about two and a half months following my last chemo infusion, they no longer screamed, “chemo patient!”
My nails served an important function, because I could use them as a visible indicator that things were, in fact, changing and recovery was truly taking place. That meant a lot to me as I awaited the return of my hair, a process that did not come as quickly as I’d been led to believe from the stories of others. But my nail journey was also something else: a reminder that everything awful, even the fear and pain and bruises from cancer, would eventually fade.
I’ll be honest, I’ve been putting off writing about what chemotherapy did to my fingernails. While I’ve wanted to provide frank accounts of my cancer treatment experience, this particular side effect was nasty, miserable and completely unexpected.
Given that I ultimately decided to post this, there are three points I need to make: (1) be forewarned, there are a number of ugly images on this page; (2) just because it happened to me doesn’t mean that it’s going to happen to you; and (3) I suspect that I could have avoided ending up in the ER, and I’ll explain how at the end.
So here it is: the most painful experience associated with my chemotherapy actually came after I was done with chemo, and it deserves a bit of an introduction. You may be aware that how chemo works is by killing off rapidly dividing cells, which is why people lose their hair and the lining of their GI tract. Fingernails are also affected, often turning black, and for some patients, falling off altogether.
My nails didn’t fall off but they really took a beating and ached a lot, almost as if they’d been slammed in a door (not the actual “slam” experience, but the aftermath). Many of them, particularly on the left hand looked like they were starting to detach, retreating into the nail bed.
Several weeks after my last infusion I noticed a little something under the nail of my left ring finger, like a bit of swelling. It didn’t look like much of anything to me, nor to my oncologist during a Friday, September 25 appointment, although he lamented that I might lose that nail.
Saturday, September 26, the increased swelling looked like a good-sized bubble under that nail. Sunday was worse, with far more pain. By that night I was in serious agony and even though I had already dubbed one of the nights after my first chemo infusion as the worst of my life, Sunday night definitively stole that title.
By early Monday morning I was in excruciating pain and paging my oncologist who exclaimed, “Hie thee to the ER!” I had a full-blown infected finger and there was a red line traveling down my hand and into my arm, meaning it was on its way to becoming systemic. I have no idea what I was thinking, not contacting my oncologist over the weekend, but the infection evolved very quickly. Had I known…
At the ER, healthcare workers winced when they saw my finger. I was miserable by the time they took me in, gave me IV antibiotics and (against my better judgment) morphine, the latter of which did nothing other than make me nauseated by the end of the day. I don’t understand how people get addicted to that stuff.
True relief arrived in the form of three lidocaine shots to the affected area. With the pain gone and the antibiotics at work, the ER doc lanced my poor finger and drained all the pus (no, I did not watch).
Once that was done, I was bandaged up, got a couple of prescriptions for 7 days of heavy duty antibiotics and sent on my way.
So here are two interesting points: (1) even after all this, I did not lose that nail; (2) of my ten fingers, only one nail became infected. For this second point, I have a theory: since I’m mainly vegetarian and was eating copious amounts of veggies during chemo, I had been instructed to clean all the raw stuff with a vinegar and water solution. I did that mainly with my right hand.
Interestingly, the fingernails on my right hand hurt less and had fewer issues than the ones on my left.
I wouldn’t be surprised if the acidity of the vinegar and its antimicrobial properties were the reasons for this. Obviously, I can’t guarantee that this made a difference, but were I to go through chemo again, I’d be spending more time dipping both hands into vinegar and water.
While being diagnosed with cancer was terrifying and going through chemo was miserable, the strange reality is that this fingernail episode probably posed the most immediate risk to my life. My husband recently admitted to me that he was afraid that after enduring six rounds of chemo, I’d fall victim to sepsis. So ironic that a cancer patient would almost be done in by an infected nail!
Most amazing is how my body healed all those insults to my hands, and within a number of weeks, the signs of that infection had faded. See photos of the healing process here.
More than two years after finishing chemo, after being afraid my hair would not grow back, and after being delighted with the way it did…I’m experiencing follicular drama, once again.
Once chemo was over, my sleepy follicles took their time getting roused into action. To say that I worried would be an understatement. I was still caught up in the unfairness of being smacked down by breast cancer. Confronting the possibility that after enduring the nastiness of cancer treatment, I might not get my hair back? That was too much.
Well, if you’ve read my posts on hair, you’ll know that my hair finally did come back. And there was much rejoicing.
And that’s where my hair posts stopped. But as happens with these kinds of things, that wasn’t the end of the story.
While still bald, I had been fed reassuring anecdotes by well-meaning supporters about hair coming back even better than before, lush locks that served as well-deserved rewards for undergoing the anxiety and strain of cancer diagnosis and treatment.
But as much as cancer patients feel like they don’t know what’s going on, those around them have even less of an idea. They want you to “stay positive” at all costs, so they overload you with lots of good news.
By now you can probably guess where I’m going with this. Because in Spring 2019, things started changing. Within a few months, my uber-cool spikey rockstar hair lost fullness as my strands thinned. Then, I saw “bald spots”.
So, let me explain how I define “bald spots”: these areas have hair, but due to the color (um, WHITE) and thinness, the hair seems translucent, even transparent. And along the part? You can’t see the roots well at all.
My reward for enduring cancer is invisible hair.
My hairstylist confirmed that the hair that comes back in after chemo is different from the hair that eventually settles in. And mine had settled.
Tamoxifen also played a role, since choking off estradiol and moving into menopause will age both you and your hair, particularly if you are premenopausal going into treatment, as I was. So this should have been expected, but in the hustle and bustle of all the other little things, like, oh, wondering if you’re going to survive the ordeal, no one really talks about the fact that there will be other changes that take place.
And now, I’ve been off tamoxifen for almost six weeks, but can’t tell whether there’s been any regrowth, not that I expect any. I meet with my oncologist this Tuesday and you can bet your panties he’s going to prescribe an aromatase inhibitor for me, so the pharmaceutical depression of estrogen will continue.
I am dealing. Mostly. Am I happy about this? Of course not. The last few years have felt like running a gauntlet of misery, but one where I’m only hobbled and not completely taken out. Given that, I’m ashamed of complaining, as there are many others doing so much worse. But not ashamed enough to stop writing about it, as this is my reality and it affects me. If I’m going through this, there’s a good chance that many others are too.
I’m supposed to be moving on and leaving cancer behind me, right? But like an annoyingly nosy neighbor, it keeps waving at me through my kitchen window, reminding me that it’s living next door.
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.
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.
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.
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.
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.