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.
My previous post was about the side effects that I experienced from my first chemotherapy infusion for breast cancer. However, side effects are specific to the individual and depend on a variety of factors. My greatest concern was that someone about to embark on chemotherapy would read about my experience and immediately assume that it would be theirs, also.
So I’m aiming this post directly at newly-diagnosed breast cancer patients, in an effort to provide helpful (I hope!) suggestions for getting through cancer and chemotherapy. The below is not supposed to be an exhaustive list — rather it contains random things to consider (in no particular order):
You can get through this. And I don’t mean that in a “rah-rah” way like a well-meaning friend who makes it their personal crusade to make sure you “think positive” for a positive outcome. That’s BS. But please know that there are medications and suggestions available to manage chemo symptoms, with a lot of advances made in the last decades, and you should make use of all of them. Ask your oncologist.
Take it step-by-step. If there’s one thing that a cancer diagnosis is, it’s overwhelming. Once you get past the initial shock, there may be more diagnositics to run and a host of treatment options to consider. You don’t have to take on everything at once. Sit down. Breathe. Clear your head.
Know your sources. Everyone and their cousin may have some miraculous piece of advice that they claim helped someone. Great for them. Everyone’s situation is different, so stick with reliable sources. This will generally be your healthcare providers, but if you feel you need to, get a second opinion. Or a third one. It’s your right because it’s your health. And tread gingerly through the internet!
Everyone’s situation is different, as mentioned in the point above. It’s worth repeating,again and again. As a matter of fact, a number of us have made this our mantra. I have suffered more from the fear of going through what someone else did than I actually did from the thing itself. That says a lot. You have a right to your own experience so feel free to protect it.
Stay informed. Once you get reliable sources, keep on top of information related to your condition. Too stressed or tired? Ask a close friend or relative, or in the absence of those, make use of the nurses at your cancer center. There is a push in medicine today to fully support the patient, and that includes providing information.
Ask for/accept help. If someone offers to clean your kitchen or prepare a meal, take them up on it. I had a mom offer to pick my son up from school on the days after my chemo and it made a huge difference! Talk to your healthcare provider about getting assistance at home if you don’t have anyone to help you.
You didn’t do anything to deserve this. Let me be the first to absolve you of responsibility. People do not purposefully bring cancer onto themselves, nor do we know enough about what causes most cancers to make you liable for your disease. Someone suggesting that? You have my permission to kick them in the teeth. (Just kidding! Don’t do that; save your energy for recovery.)
Prepare your area. A bedside table with all the things you’ll need to ride out chemo side effects at the ready will make things easier. I used a chair without a cushion to keep necessary medications and a glass of flat ginger ale on hand.
Set your boundaries. You may not want visitors/advice/your aunt’s casserole and that’s okay. If you have a partner or friend to act as a gatekeeper, perfect, but if not, feel free to pull the cancer card and ask people to leave you alone, guilt-free.
Make use of freebies. Ask your nurses about organizations or individuals who offer services at low or no cost to cancer patients. I was told of a salon that provided free head-shaving, wigs and scarves and scarf tying lessons, and of an aesthetician who gave free facials. There is a program called “Look Good, Feel Better” that provides high-end makeup and application tutorials, including helpful things like drawing on eyebrows. See what’s available in your area.
Distract yourself. And do so with pleasant things, whether it’s watching rented movies, taking a drawing class, going for a walk. Be mindful as you’re doing so, truly enjoying each moment. Your cancer center may have various activities available for cancer patients.
Breathe. I know I said this before, but it’s worth repeating. Breathe.
IMPORTANT: The effects of chemotherapy vary from drug to drug and patient to patient. My side effects may be very different from what others experience. If you are about to start chemo, please consider not reading this post, as I do not want to cause you unnecessary anxiety. You have the right to enter into treatment without fear or preconceived notions that may be irrelevant to your situation! Instead, read THIS.
This is one of those “if you wanted to know but were afraid to ask” posts. It’s not meant to scare anyone. Chemotherapy has a frightening reputation, but often what really unnerves us are the unknowns. I took a lot of notes on my treatment experience and wanted to share these in case anyone was curious. This is a much longer post than usual, so kudos to anyone who gets to the end!
Today, April 27th, marks the two-year anniversary of my very first chemotherapy infusion for treating my triple-positive breast cancer. I was told that the first chemo was often a shock to the system and could be exceptionally hard on the body. This was true for me — sort of — because the nature of the side effects changed from one infusion to the next. My reaction to the first infusion resulted in the greatest variety of effects, a number of which didn’t significantly reoccur with subsequent infusions, even though fatigue became much worse by my sixth and final chemo session.
In addition, when I started I was not prepared to manage all the side effects effectively, whereas with later infusions, I knew better what to expect. I was most fearful of nausea as I had been warned that if I started vomiting it would be difficult to stop and might necessitate a trip to the Emergency Room. This was not a comforting thought. I was prescribed anti-nausea medications but even they had side effects, so I resisted taking them. Eventually, as mentioned in a previous post, I switched to CBD and it provided enough relief without any noticeable side effects, calming my fears. I was grateful that I lived in a state where it was freely available.
My 4-hour-long chemo infusion session consisted of : 1) Herceptin 2) Benedryl & steroids 3) Taxotere 4) Carboplatin
This was in addition to steroids that I had to take starting from the day prior through the day following the infusion. That’s a LOT of medication for someone who was unaccustomed to taking drugs at all! Because of this, I can’t say my side effects were all attributable to the chemo drugs themselves, so this should be considered a run-down of the entire “chemo experience”.
4/27/2017: This was the day of my first chemo infusion at my cancer center, following check-in and bloodwork. I received my I.V. seated by the nurses’ station so they could watch for adverse reactions, but I tolerated the infusion well. There were no acute side effects except sleeplessness from the steroids. I was off to a promising start!
4/28/2017: I returned to the cancer center for a Neulasta injection (stimulated white blood cell production, which took a hit from chemo) and took Claritin (anti-histamine) prophylactically as it helped with potential bone pain from the Neulasta. No nausea, but I noticed that my stomach felt better if I ate more frequently. Finished up my last steroids but they were still affecting my sleep.
By that evening, things were looking surreal, like I wasn’t completely here.
4/29/2017: My stomach started feeling funny, particularly towards the end of the day. I still wasn’t sleeping well, and I had difficulty standing in place. And that afternoon I made what ranks as one of the biggest mistakes of my life: for dinner, I ate an entire package of Palak Paneer (Trader Joe’s). It was Indian food made with spinach, paneer cheese and spices. I was hungry, yes, but it was a foolish move. I would pay for it.
Shortly after dinner, I was overtaken by a wooziness and began regretting my dinner choice. After some fearful indecision, I took an anti-nausea pill (ondansetron) and propped my head up in bed.
4/30/2017: Things started to get serious. My energy levels were dropping, and by the evening my stomach was on fire. I felt like I’d been hit by a truck. Putting my head down made me feel sick so I tried to sleep sitting up in bed.
That night was horrible. I took two different anti-nausea medications (four hours apart), but confused their order, so the pill I took first, I should have taken second (prochlorperazine, an anti-psychotic (!) drug with anti-nausea properties). Ho ho ho. Yeah, don’t do that. My dreams were colorless with a gritty texture, like someone had smeared coffee grounds on them. My nausea didn’t improve and I paced back and forth in the living room until enough time had passed so I could take the ondansetron pill that I should have taken first. Death was looking like an attractive alternative.
5/1/2017: I was deep in the “real” side effects by now. I had severe fatigue and a woozy stomach, no appetite, bone pain and headache (probably because I couldn’t get coffee down). Most of this day was spent in bed. I tried taking CBD to help with the nausea, since I was getting constipated from the chemo and anti-nausea meds. I got the dosing wrong on the CBD, fell asleep, waking with a gasp because I thought I’d stopped breathing. Disconcerting, to say the least. For the record, I figured the dosing out by my second infusion.
5/2/2017: My fatigue was starting to improve and my appetite was coming back, but my stomach couldn’t handle food (fun fact: chemo made the lining of my GI tract slough off). It was a frustrating situation: I was hungry but unable to eat. My throat felt raw and my skin was getting chapped. The inside of my mouth was drying out and it felt like there was gunk on my teeth even after brushing them.
Warning, TMI! I, the multi-decade vegetarian, was officially constipated. This was a miserable feeling. It took an hour of straining on the toilet to finally produce a post-chemo bowel movement, at which point I decided that I’d rather starve than go through that again. With subsequent infusions, I was able to tweak my diet and avoid a repeat. I can’t imagine going through this on a regular basis!
5/3/2017: Finally! I got a good night’s sleep, although could have used a few hours more. My lips were severely chapped and my throat felt so swollen that swallowing was difficult. I tried eating crackers but as tender as the inside of my mouth was, it felt like I was chewing glass. Luckily, a salt-and-baking soda mouth rinse provided a little relief to the soreness. There was a lot of gunk on my teeth, probably because my GI tract was in rough shape and I was experiencing reflux.
5/4/2017: This was my first day back to work following the infusion. The intense chemo fatigue had let up, but my throat was still sore, mouth raw and lips chapped. I was getting nosebleeds. I had a huge headache in the morning, but it eased after eating, which still required very soft and bland foods.
5/5/2017: There was noticeably less mouth and throat pain. Still had a headache and chapped lips along with an itchy scalp. By evening my saliva had a strong bitter taste, making food less palatable.
5/6/2017: My tongue stuck to the roof of my mouth overnight! Overall, my mouth and throat were feeling better and it was easier to swallow, but my skin was very dry and itchy, and my scalp tingled. Still, I was feeling much more normal, except that my saliva was still unpleasantly bitter.
5/7/2017: Skin and lips were still chapped and I was having nosebleeds, but it was easier to eat crunchy foods. My saliva was still bitter but it didn’t seem as bad when I was eating. Swallowing was getting easier to do without feeling like I was taking air into my stomach, something that I realized had caused a lot of discomfort in previous days.
5/8/2017: Most of my energy had returned. My skin and lips were dry and irritated and I had a runny nose in addition to nosebleeds. Now my mouth was able to handle carbonated drinks along with a more normal diet full of crunchy veggies. This was the first day that I was able to do a workout with weights, even though I had to keep it light.
5/9/2017: Lips were still chapped and the inside of my mouth stuck to my gums at night. But finally I was able to eat spicier foods and the taste of my saliva had significantly improved. I was continuing to have sleep issues but I’m unsure if this was a leftover side effect or just a general reaction to the anxiety associated with cancer treatment.
5/10/2017: Still chapped lips and dry mouth, but now I could eat whatever I wanted to with no discomfort.
5/11/2017: My nose was bleeding much less, but — surprise, surprise — my hair started falling out. As a matter of fact, it was falling out on schedule, as I’d been told to expect hair loss about two weeks following my first chemo. So much for escaping that side effect.
5/12/2017: Hair was coming out more rapidly. It probably wouldn’t have been noticeable to a bystander, but when I ran my fingers through it, I was left with a handful. I tried not to touch it so that I could get through my workday without creating bald spots.
At this point, I had fully recovered from the chemo. In all honesty, the week after my first infusion I had no idea how I could go through it five more times. But with three weeks in between chemo sessions, I had enough of a chance to feel human again. In addition, while I would still have GI tract issues and experience severe fatigue with subsequent infusions, many of the above listed side effects didn’t return. I did, however, experience new ones: water retention, loss of taste, constant tearing of the eyes, very runny nose, loose teeth and the like.
My first infusion was a great lesson in being patient and taking things as they come. The side effects don’t happen all at once; it’s a cascade, with one rising up while another ebbs. When in treatment, the best you can do is to stay in the present and ride them out like waves.
The most important take-home point? Chemotherapy is doable. That doesn’t mean it’s a pleasant experience, but it’s one you can get through.
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.