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.
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.
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.
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!
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…
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.
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.
My last post (I Didn’t Expect THAT: So.Many.Pills) was about the overwhelming number of medications associated with cancer treatment, particularly for someone not used to taking pills. But this topic deserves a closer look…
If I had to choose one of the most frightening aspects of cancer treatment, it would be side effects. This is not like popping an aspirin for a headache. These are medications that can take a heavy toll. One of my greatest sources of anxiety was deciding whether to take a pill or try to “tough it out”.
After surgery, I was given a generic form of something approximating Norco. Some people jokingly commented that this was a “perk” of treatment, but I had read the insert that came with the medication and wanted nothing to do with it. The only reason that I took it (a single half dose) was that by the evening I had a horrible headache, more painful than anything at the surgery site and probably due to a combination of the anesthesia and not being able to drink coffee that morning.
It was a miserable night, since the half dose didn’t do much and I tossed in bed, googling interactions between my pill and ibuprofin, which is what I really wanted to take but hadn’t due to potential bleeding issues. At about 5am, satisfied that enough time had passed from my half dose of pain reliever, I took the ibuprofin and finally got some sleep. Wish I’d taken it first instead of the “oooo-you’re-so-lucky” Norco.
Nausea from chemo was another terrifying thought. The nurses had warned me not to risk it; if I started to feel queasy, take anti-nausea meds. Once vomiting sets in, I was told, it was hard to stop. Of course, the side effects associated with the meds were rather extensive and just reading the label made me anxious. There were two different meds and the idea was this: take the first one (ondonsetron) and then if I need a booster in four hours, take the second one (prochlorperazine). And then alternate like that every four hours, if necessary.
Sounds reasonable, except that a couple of nights after my first infusion I mixed up the pills and ended up taking prochlorperazine first. Prochlorperazine is an anti-psychotic (I guess, with anti-nausea properties?) and it was responsible for one of the roughest nights of my life. It was that night that I swore I’d pierced the veil between this world and the next and decided that death was a fair alternative to what I was feeling.
Somehow, I survived those first nights, but I wasn’t keen to go through that again.
I live in a state that has legalized cannabis, and was sent a shipment of CBD cookies by one of my brothers who had used them to control nausea from migraines. I was encouraged to try them since I was told CBD didn’t have side effects. Of course, as I mentioned in the previous post, it also didn’t have clear dosing guidelines. I mean, this was a crumbly cookie – how do you dose that? My brother said something like, “I take a couple when I get a migraine.” My brother is also 6’3″. I figured I’d start with one.
Shortly after that, I fell into a weird sleep from which, an hour later, I woke with a gasp because I thought I’d stopped breathing. Mmmm, probably not the right dose for me. Four hours after I’d consumed the cookie I needed to pick up my son from school. I wasn’t high, of course, but I wasn’t feeling normal either. I made it there and back alive. It was at that point that I realized having to play mom while going through cancer treatment just plain sucked, but I digress…
Eventually I worked out a dose, about 1/5 to 1/4 of a cookie, which was 20-25 mg of CBD. This was a game-changer for me and I gratefully relied on CBD for the remainder of my treatment. Yes, I truly disliked the taste, and with the lining of my GI tract gone, eating a cookie was not first on my list but being able to calm my nausea without side effects was well worth it. It probably helped my anxiety too.
What it would have been like to go through treatment without being so fearful of what the medications were doing to me? Anxiety always got the best of me. As noted in my last post, getting to the point where I could limit the number of medications I took was key in helping me get through this experience.
While the physical effects were rough, the psychological effects were what magnified the discomfort, and that had to do with feeling so far out of my element. None of this was close to normal. Of course, my normal is not needing medications. That wasn’t happening with cancer, but once I figured out what was what and how much I could handle, treatment became more manageable.