Not gonna lie, I really did not want to go on yet another medication, but for this appointment, I left all the journal articles at home and put away the boxing gloves. I promised my oncologist that I would stay off the forums, stay off PubMed, quit overthinking things and give letrozole a chance.
The reason? My oncologist thinks that my earlier frustration with tamoxifen was, to put it bluntly, in my head. And my clinical counselor suggested that what I complained of could be explained by anxiety. But I swore that my memory and focus issues started with tamoxifen.
You know what? I’m not so sure now.
The fact is, everything that I was experiencing could have been caused by anxiety (or menopause). And even more striking were the things that I didn’t experience. Not only did I not have significant hot flashes (maybe a “warm flush” here or there, easily countered by taking off a sweater), I never had night sweats. Heck, I had more night sweats before my cancer.
No weight gain, either, which had been another big concern of mine. I’ve been disciplined in maintaining healthy fitness habits throughout my adult life, probably to the point that most people wouldn’t tolerate. Tamoxifen didn’t manage to mess with that, which was extremely gratifying.
While I really want to peg the concentration problems, distractability, flagging libido and other negatives on estrogen-blockers, a retrospective look at my emotional history suggests that (1) I’m highly suggestible (I need to stay off the internet!), (2) there have been loads of anxiety-amplifying events in my life, even before cancer, that I haven’t handled well, and (3) I would be better off shutting up, taking the pill and working on getting my mental state in order.
I mean, I already knew most of this. But some things need to hit me between the eyes a number of times before they actually register.
So, while my oncologist warned me about “a little joint pain” (eek!), I’ve avoided anything but a cursory glance at what I might experience on letrozole, besides what reactions would necessitate calling the doctors.
We’ll see how bad these side effects really are.
A FINAL NOTE – According to what was written on the bottle, this stuff can cause dizziness and impair my ability to operate a vehicle. Seriously? I didn’t expect that, but here’s what I’m going to do with that tidbit of information: I’m going to view letrozole as a reason to get to bed earlier, since I’ll obviously have to take it in the evening. And I’m going to tell myself that this is going to help me sleep. Who knows, maybe it will?
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.
After some intense research on the risk of developing breast cancer, I’ve come to the conclusion that the factor with the greatest causal relationship to the disease is, quite frankly, life. In fact, I sometimes wonder how people manage to NOT get cancer.
Being born female (well that covers about 50% of us)
Getting older (um, inevitable…)
Drinking alcohol (even moderate drinking has been shown to be harmful – find a different hobby)
BRCA1 and BRCA2 gene mutations, which everyone talks about, but certain mutations in the following may also increase cancer risk, although to a lesser extent: ATM, TP53, CHEK2, PTEN, CDH1, STK11, PALB2
Personal history of breast cancer (get it once and you’re a moving target)
Family history of breast cancer (including both close and distant relatives)
Personal history of breast lesions (even stuff that seemed benign-ish)
Radiation exposure, specifically to the face and chest, before the age of 30
Obesity (but mainly for postmenopausal women, see here; it’s complicated)
Having dense breasts (sometimes this is considered a top risk factor)
Beginning your period before age 12
Going through menopause after age 55
Having your first child after age 30
Never having kids (remember that when you’re paying for their college)
Taking hormone replacement therapy (HRT)
Certain hormonal birth control methods
Family history of ovarian cancer, especially before age 50.
Being white (at least in the U.S., although the rates of African-American women are catching up, often with a worse prognosis)
Having received diethylstilbestrol (DES) to prevent miscarriage, given either to you or your mother
Being inactive (honestly, exercise is critical – don’t overthink it – MOVE!)
Not breastfeeding (not only does nursing lower your risk, if you do get breast cancer, you’re less likely to get the aggressive triple-negative type)
Being taller (this may have to do with faster growth at an early age)
Doing night shift work (this may affect your hormone patterns, not to mention make you cranky during the day)
Smoking (the evidence for this has been deemed “suggestive, but not sufficient”, but inhaling smoke sounds like a bad idea regardless)
Exposure to cancer-causing chemicals (that’s, like, just about everything out there, and the connection remains unclear)
Diet choices (this is unclear, although there have been some links drawn to both macronutrient proportions and some vitamins, but more research must be done)
In a word, we really don’t know, but living a healthy lifestyle gives you the best chance for survival.
Finally, the things that seem to have no reasonable link (per WebMD and echoed on other sites):
Antiperspirant (no need to stink)
Bras, underwire and regular (feel free to support yourself)
Abortion or miscarriage
Fibrocystic breast changes
Coffee/caffeine (raise your mug in celebration!)
Hair dye (unless it’s really radioactive, but come on, that would be silly)
Judging from the above info, it can feel like cancer is waiting around the corner to pounce on the next unsuspecting victim that wanders by. I thought I had ZERO risk factors, but I can easily pick out several there. At the same time, I know people who seem like they’d have a gazillion risk factors and they never get zapped. So.not.fair. But that’s cancer for you.
And the more we find out about the disease, the more we see how complex it is. We are all different, reflected by our DNA, so it’s not out of the question that we might be affected in unique ways by these risk factors. Research is uncovering new connections all the time, and it may be that in order to find a cure for cancer, we’re going to have to look at the disease in ways that we never have.
You’ve probably seen those plastic breast self-exam cards you hang on your showerhead as a reminder to feel for lumps on a monthly basis. I have one myself, and would read it over and over when I was trying to decide whether my lump was worrisome, reviewing the “reduce your risk” tips the card offered.
However, there are two points that I wasn’t aware of at the time that I was diagnosed: (1) we know little about causal factors, as most studies that examine risk are only correlational; and (2) there’s a difference between being premenopausal vs. postmenopausal when talking about breast cancer.
Okay, there’s a third one too: (3) risk factors don’t mean squat when I’m talking about my personal diagnosis.
First, a well-known fact: postmenopausal women make up the majority (approximately 2/3) of these cancer cases, so it’s not surprising that the focus is on them.
I, however, was premenopausal when I felt the lump in my left breast.
Imagine my surprise, then, when I learned that while being overweight or obese is a significant risk factor for postmenopausal women, being overweight as a premenopausal woman seems to offer protection against the disease. Whereas I thought I didn’t have any risk factors for breast cancer, as suggested by that plastic card in my shower, perhaps I did.
There’s not much talk about that protective element of weight for premenopausal women. You would be hard-pressed to find a popular website that mentions it. And no doctor would encourage a premenopausal woman to carry extra weight on the off chance that it might lower her risk of breast cancer; it’s too much of a liability for other health issues, including other cancers.
This explains why, if you’ve gone to a gathering of newly-diagnosed breast cancer patients, you’ll see some younger, remarkably fit women looking a little dazed and wondering what they’re doing there.
It’s true that everything about cancer is complicated. If it were straightforward, we would have found a cure by now. Furthermore, when it comes to guidelines to follow, people don’t want details, they want sound bites. But simplification cuts out information. For example, this CDC webpage about what you can do to lower your breast cancer risk posts recommendations geared for older women, including maintaining a “healthy weight”, but the photo that’s shown is clearly of two younger women.
Even a cursory glance at the research reveals what a difference menopausal status makes. In addition to extra weight seeming to have a protective effect in premenopausal women (Cold et al., 1998, Eur J Cancer; Lahmann et al., 2004, Int J Cancer), it’s also been determined that greater red meat consumption in adolescence is significantly associated with increased risk of breast cancer in premenopausal women (Farvid et al., 2015, Int J Cancer). Interestingly, higher quality diets have a more beneficial effect on the risk of postmenopausal women and seemingly no effect on premenopausal ones (Haridass et al., 2018, J Nutr). I would expect that a more exhaustive search would yield even greater differences.
So what does this tell us? This is less about the specific differences between pre- and postmenopausal breast cancer risk, and more that there simply is a difference. At this point in our knowledge, we are still putting together pieces of the cancer puzzle.
Additionally, many studies that offer preventative guidelines are based on other studies–they may be meta-analyses of previously collected data from a broad range of subjects. The data may be self-reported, which may result in recall error. And when you have a sample size of ~30,000 women, you’re talking about general risks for populations, not a specific risk for a specific, and very unique, individual: you.
All this sounds exasperating, but one concept holds true: no matter what your risks, the healthier you are before you’re diagnosed with cancer, the better your outcome compared to someone with less healthful habits, should you get the disease. Instead of obsessing about possible risk factors, give yourself the respect you deserve–put the effort into improving lifestyle habits to grant yourself the best chance for survival. In the end, that’s what matters.
This weekend would have marked two years of taking tamoxifen, the estradiol-blocking medication that is supposed to keep my hormone-positive breast cancer from recurring.
As it turns out, there will be no such commemoration. Several weeks ago, I started noticing a funny cramping feeling in the general area of my uterus. It was light and under any other circumstances, I would have ignored it, but use of tamoxifen is associated with an increased risk of endometrial/uterine cancer, so it kept me on edge.
It’s worth noting that the increased risk is actually for postmenopausal women, and to the best of my knowledge, I was not yet postmenopausal. That’s why pre- and perimenopausal women are started on tamoxifen but taken off of it as soon as they go through menopause. Still the sensation, although intermittent, didn’t go away.
I finally called my oncologist. As it was, I was wary of tamoxifen – I already blamed it for a number of other negative things that I experienced: fatigue, hair thinning, low libido, cognitive issues, mood swings, general misery…all of those and more were listed as possible side effects.
I complained about the light cramping to an oncological nurse, who was surprised that I didn’t have a recent pap smear on record, because according to her, the oncologist wanted me to have one yearly. Mind you, pap smears are for cervical cancer, and I wasn’t at an increased risk for that. But whatever. The nurse gave me her blessing to stay off tamoxifen until I next saw the oncologist.
Conveniently, my oncologist appointment was in three days.
I was stressed, because if there’s one thing that being a cancer survivor made me good at, it was stressing. So much so, that my blood pressure hit 165/95 at my appointment. I couldn’t get over how ridiculous that was and how my thoughts had generated that sort of a reaction. I don’t think my pressure was even that high before my cancer surgery, at a time when my anxiety was raging and everything felt out of control.
I had a prolonged discussion (negotiation?) with my oncologist. In the end, we decided the following: I could take a month off tamoxifen and meet with him again in six weeks. In the meantime, I would go to my gynecologist to rule out endometrial cancer. (Incidentally, a week later at the gynecologist’s office my blood pressure was back down to a very reasonable 102/64.)
My oncologist and my clinical counselor (who I discovered had spoken to him about me) thought that some of the worst side effects that I was experiencing were not due to tamoxifen, but anxiety. My onc suggested that if nothing improved after a month off tamoxifen, I should consider anti-anxiety meds.
But he also checked my hormone levels to see where I was in my journey into menopause. A few days later, I got the news: I was officially postmenopausal and was told to not restart tamoxifen.
So, okay, no more tamoxifen. I was also quite happy that I managed to transition through menopause without any significant hot flashes. The downside of this was, however, that I would be put on an aromatase inhibitor, which came with its own set of side effects, not the least of which was significant bone pain and bone density loss.
Or at least those were some of the effects that I remembered from the last time that I read about them, which was a while ago. This time, I’ve decided, I won’t go back and research all the negatives of the medication. Anxiety does hit me hard, I have to admit, and I want to be sure that I’m really experiencing what I’m experiencing and not simply being influenced by what I’ve read.
So I’ll give the new medication a fair shake and give myself a break by not getting worked up by what *might* happen. As the gynecologist said, looking over my bloodwork, “Actually, you’re really healthy, except for having had breast cancer.” I’m going to go with that and see where it takes me.
For those unfamiliar with the drug tamoxifen, its purpose is to block estradiol receptors in an effort to decrease the chances of developing hormone receptor positive breast cancer. My own tumor had been estrogen and progesterone receptor positive, so tamoxifen is pretty much standard fare for women in my situation.
The trick is, however, to make sure women keep taking the medication, and the side effects may make that a challenge. The current recommendation for pre-menopausal women with hormone receptor positive cancer is ten years of tamoxifen. When I posted after a year of taking tamoxifen, I was experiencing minor side effects but had managed to avoid the worst hot flashes and night sweats that many women complain of. And even the side effects I had I couldn’t completely pin on the drug.
After a year and a half of tamoxifen, the landscape has changed. My estradiol level, which was 36 pg/mL when I started in November 2017, has dropped to 22 pg/mL. I’m still not having a significant problem with body temperature regulation, although this may change with the summer months.
There are, however, other distressing issues that are becoming increasingly problematic:
1. Memory lapses. I’ve written about this in a number of other posts, but it deserves mention again because it’s not getting any better. I struggle with distractability and loss of focus, which compromise my ability to do my current job. There are details that I simply miss, and I have a hard time juggling things in my head. Yes, I write everything down and follow my own advice, but there are days that I want to give up and go home.
Bottom line, even with workarounds, my concentration makes me ineffective at times. That alone could be a deciding factor in how long I will last on this medication, but it’s not the only one.
2. Fatigue. This has become more noticeable and is affecting my workouts. I feel like I’m losing ground on my fitness. While I’m no stranger to working out even when I don’t feel like it, there are days that I feel beat before I begin, and like I’ve been run over by a truck by the time I’m done. Exercise is such a crucial part of recovery and good health — and a very important part of my life — that it seems ridiculous that my treatment should be getting in the way of it!
3. Loss of libido and emotional attachment. This would be easier to take if I were single and living alone, but dealing with this side effect in the context of a relationship is getting progressively more difficult. It is not simply romantic desire that has dwindled; feelings of affection for my husband and children have dulled. I know I love them and feel a strong sense of responsibility for them, but there’s a numbness where there used to be warm emotions. It breaks my heart because I don’t want to feel this way.
4. Depression/mood swings. On the plus side, I know what’s going on and am actively working with my counselor on dealing with these fluctuations, but these are side effects of the drug, so as long as I’m taking it, I feel like I’m trying to bail water out of a sinking boat with a spoon.
5. Argh, again with the hair! After regrowing my hair following chemo, it has been thinning from tamoxifen. This may seem insignificant in the grand scheme of things, but if you’ve ever lost your hair to cancer treatment, you know that it can be a emotional experience. Getting your hair back is a big deal, but thinning hair brings back a sense of helplessness and lack of control.
Notice that the effects above are not readily apparent — even the thinning hair might not be as noticeable to an observer as it is to me. It’s easier to understand visible health-related consequences, but we as a society have a hard time getting our head around (or expressing concern for) the importance and impact that emotional factors have on quality of life. You can’t see my concentration difficulties or depressive mood or grief over numbed affection, but they affect me as strongly as do any physical symptoms.
This is a good place to stop and mention gratitude. The fact that I write this post as a former cancer patient on a maintenance drug to help keep my cancer from re-occurring…that is a privilege. My good fortune is not lost on me, and it is something I think about every single day. We have come a long way in treating my type of breast cancer and I am the beneficiary of those advances.
But there is also an expectation that now that chemo and radiation are done and my scans are clean, I should be “back to normal”. I would like nothing more than that, but I’m not there.
This brings me to a deal I made with myself: I promise to do my utmost to last through five years of tamoxifen. However, years 6-10 remain to be seen. At some point, the scales will tip and quality of life will win out over whatever purported percentage of increased survivorship the full decade of the drug can offer me. This offers me some strength to push on and focus on the present, doing the best I can with what I have.
You’d think that by now, over a year since finishing most of my breast cancer treatment, I would drop the subject and get on with things. But, no, cancer isn’t like that — and apparently, neither am I. Just when I think I’ve moved on, something else comes up. So here goes:
Breast cancer has had me see-sawing between two states of mind.
On the one hand, when I was going through treatment, I didn’t want people to feel uneasy talking to me (because they do!). I downplayed the cancer diagnosis and tried to be as matter-of-fact as possible, all with a pleasant smile and carefree shrug. Yeah, surgery-chemo-radiation, no biggie. My focus was on mitigating their uncomfortable reactions — in my mind, they were the ones needing the comforting and support.
That’s because telling someone I had cancer often made them squirm. They didn’t know the “right” thing to say, afraid of hurting or upsetting me, even though the reality was that what was inside my head was far worse than anything they could have said. So I always tried to crack a joke about my bald scalp or discolored nails as if to tell them I’m cool with it.
This extended into post-treatment life. Since I feel a little distance between the disease and me, I don’t always remember that I can catch people off guard when I talk about cancer. People still blush and stumble on words, looking like they want to change the subject. I always try to make it no big deal.
But on the other hand, the reality is that cancer is serious. Treatment can be all sorts of horrible and there are no guarantees about anything. Everyone who’s had breast cancer has to live with the uncertainty of its return. And with the large number of women who have experienced or are still wading through different stages of treatment, there’s a lot of suffering going on.
And so, I struggle with people telling me not to focus on the past. Obviously, that would be helpful. But it’s not easy, because even when treatment is over, the fear remains. Cancer strode in like an arrogant rake, dragged me around the block a few times and left an indelible mark on my psyche. My health is back and I’ve regained a lot of physical strength, but there’s that niggling fear that cancer will return and take it all again, and the emotional pain associated with that potentiality stifles any celebration. It was easier to focus on getting through chemo and radiation than to wander into the Wild West of the future.
So I fight with myself. Sometimes I need to talk about how miserable it was and how angry it made me (one side of the seesaw), all the while not wanting to make people uncomfortable about it (the other side). That, of course, is not a successful combination. Ultimately, I put on a brave face, take a deep breath and quietly hurt inside.
But don’t worry, after I write about it, I can shake off these feelings and I’m okay.
While it’s not my intention to write advice columns for breast cancer patients, because I posted ‘getting through chemo‘ tips, I might as well follow up with what I’ve learned about handling the memory and focus issues associated with chemo brain.
Note, first, that chemo brain may not be all chemo. There may be various factors involved (chemo, tamoxifen, onset of menopause, even the tumor itself) and it’s difficult to tease out which one is the main culprit. Be that as it may, it still sucks when you’re standing in your closet, wondering why you went in there…for the tenth time today.
I put a lot of blame for this lack of focus and fleeting short-term memory on the estrogen-blocking drug tamoxifen, which is given to women with hormone receptor positive tumors. I can’t tell you how many physicians have assured me that it’s a “great drug” for decreasing risk of tumor recurrence. And an equally large number of women who have told me that their lives improved after they got off it.
Regardless, for now chemo brain is a fact of my life, so in the spirit of accepting what I cannot change, here are my best practices for making sure that chemo brain doesn’t get me fired from my job:
Write down your thoughts. And do it immediately. I’ve actually lost thoughts as I was scrounging for a writing utensil. If I have to remember something, I put it in writing, often on a sticky-note that goes on my computer monitor or bathroom mirror. Some place that I look at multiple times a day. I do this to excess, with notes everywhere, but it works. It also decreases my stress levels because I know the thought has been recorded.
If you can’t write it down, repetez! Repeat it in your head. Sounds obvious and overly simplistic? Perhaps, but you only need to do this until you either no longer need the thought, or get to a place where you can jot down a note. Of course, I ruined the last part of a meditation retreat for myself because a load of great post topics popped into my head and I had no place to record them. On the bright side, I realized I could juggle seven items in my head for a half hour if I concentrated on them!
Narrate what you’re doing. I’ve had to resort to this, especially when working on a multi-step process where accuracy counts. Yes, I’ve made mistakes on the “I-must-be-smoking-crack” scale, and this is often one of the best ways to avoid that. When I hear myself say what I’m supposed to be doing, I stay on task and am less likely to wander off.
Avoid distractions. This is probably the most critical piece of advice I can offer. Distractions are death to my thoughts because I go down rabbit holes before I’m even aware of what happened. The Google page of my Firefox browser at work suggests articles to read based on my browsing history, and let me tell ya, there are few feelings worse than suddenly realizing that you are lost deep in an article on body language when you should have been finishing up a report that’s due in a hour. How’d that happen? Anything that breaks my concentration — even a tickle of a distraction — can sidetrack me for minutes before I come to my senses.
Bottom line is, stay present. If there were one general rule of thumb to preserve your functioning while in the grips of chemo brain, that would be it.
The above hints may seem obvious, but I went through a lot of frustration until I accepted that my brain had changed and it couldn’t be ‘business as usual’ anymore. Once I started working around my limitations, things got a lot easier.
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.