After Four Years of Treatment, Calling It a Day; or, “If It’s Not One Thing, It’s Another”

I saw my oncologist last Thursday, February 18th.

It was just few days short of four years from my diagnostic mammogram, the one after which I was told I had triple-positive breast cancer.

If you or someone you love has been through this experience, you know the drill: surgery, chemotherapy, radiation, maybe monoclonal antibodies, endocrine therapy. Yours may come in a different flavor, but the dish is the same, give or take.

Last Thursday, following three years of endocrine therapy (two of tamoxifen and one of letrozole [aromatase inhibitor]), I called it quits, with my oncologist’s permission. The side effects of the letrozole became too much for my joints, my brain, my intimate relationship, and possibly even my heart. My doc said he knew it when he saw me and agreed that enough was enough.

Yes, this should be me right now, since I’ve eagerly awaited this day for a long time. But it’s complicated…

Keep in mind the song that all of us cancer folk sing: “everyone’s experience is different.” Based on my personal situation, and after a medical consult, this was the right decision for me.

I wanted to know what to watch out for, so my doc said:

1. Unexplained weight loss
2. Persistent cough
3. Neurological issues (i.e., seeing things that aren’t there, blurred vision, etc.)

Obviously, there are other signs of cancer recurrence, but those are what my oncologist wanted me to be particularly wary of. And then he noted that he couldn’t remember the last time one of his HER2+ patients had a relapse, so effective is the Herceptin that we’re given. But it has heart risks.

Since I’ve been off letrozole only a few days, I’m still experiencing most of the side effects–it will take several weeks to shake them.

I almost don’t know what to do with myself, and I’d be beside myself with joy if it weren’t for a possible heart arrhythmia (!) that I am experiencing. I’ve already scheduled an appointment with a cardiologist.

‘Round and ’round and ’round we go…

Yeah, I’m miffed that there’s always something with cancer. A week prior to my onc appointment I’d been in my car at a traffic light when I felt heart palpitations, sort of–and then I started seeing dark spots, like you do before you faint. The episode passed, but I had been having those brief palpitations for months, minus the spots. Maybe once a day? Maybe less.

And over a year ago, I went in for a regular health check-up, during which time the nurse practitioner checked my vitals and noted that there was some irregularity in my heartrate.

Just like with my cancerous lump, I waited, thinking would go away. But chemo and especially Herceptin are cardiotoxic, and aromatase inhibitors have been associated with heart arrhythmias. So just as soon as I got off the cancer carousel, I’m getting on the cardiac one–until I’m able to rule out problems.

I have both a 3-D mammogram and an EKG next week, and I’m way more worried about the EKG. Who would have expected that from a breast cancer survivor?

“The Gun Show”: Assessing Biceps Muscle Loss Due To Endocrine Therapy [PHOTOS]

In my last post, I whined about the repercussions of taking aromatase inhibitors (in my case, letrozole) as a way to diminish the amount of estrogen in my body, for the purpose of reducing the risk of breast cancer recurrence.

While I also mentioned letrozole’s effects on my exercise habits, in this post I wanted to drill down on one aspect in particular: muscle loss.

Before I go further, I need to add a disclaimer. Since the time the first photo was taken (the morning before my first chemo infusion), three and a half years passed and I went through menopause. Notably, the menopause was pharmaceutically-driven, starting with tamoxifen and then, after my hormone levels were low enough, continuing with letrozole. However, my body now is dealing with the same aging effects as someone who had transitioned naturally.

Except that my transition came before its time.

The below photo is from April 27, 2017, before I headed to the infusion center for my first dose of chemo. I had been training as normally as I could, under the conditions of lumpectomy and port placement that I wrote about here, and finding work-arounds for exercises that I’d been told not to do.

This is my 51-year-old biceps muscle, before I started the pharmaceutical portion of my breast cancer treatment.

While I lost some size and strength throughout my chemo infusions (here are all the photos), I was able to bounce back and had a particularly strong 2018 (sorry, don’t have good photos of that). But as the endocrine therapy with tamoxifen continued in 2019, to be replaced by letrozole in 2020, I could feel the effects of low estrogen.

On December 11, 2020, I struck the same pose again for sake of comparison.

Is something missing? This is my 54-year-old biceps muscle, struggling to keep up. Note: I am still working out as hard as I can!

As far as muscle appearance is concerned, I have experienced a slow downhill slide. My shoulder is not as peak-y, the biceps itself has decreased in size and I even find it more difficult to hold this muscular contraction. In addition, there’s more looseness in my skin, particularly at the back of my arm, which in part may be due to loss of collagen, also affected by estrogen levels (nice dermatological review by Shah & Maibach, 2001, Am J Clin Dermatol).

I’m busting my butt trying to increase the amount that I’m lifting, but I’m not making progress. Not surprisingly, the decrease in estrogen plays a role in this. As stated by Chidi-Ogbolu & Baar (2019, Front Physiol), “estrogen improves muscle mass and strength, and increases the collagen content of connective tissues”.

It makes sense then that lack of estrogen is going to be detrimental to maintaining muscle. To that point, Kitajima & Ono (2016, J Endocrinol), working with animal models, have found that “estrogen insufficiency leads to muscle atrophy and decreased muscle strength of female mice.”

Not just mice, obviously.

This information comes as no surprise to any woman who’s gone through menopause, I’m sure. But the experience of being slammed through menopause instead of having the opportunity to transition more gradually is yet another frustrating way that having cancer pulls the rug out from under you and reminds you that you are not in control of your life.

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Slowly, yoga is becoming more important in my life and my view of fitness is changing. Good thing too, since I can’t keep beating myself up like this.

A Year on Letrozole

Warning: This is going to be a bit of a gripe-fest…

This coming week marks my one-year anniversary of taking letrozole, an aromatase inhibitor designed to reduce the risk of recurrence of my breast cancer by reducing the levels of estradiol (precurser to estrogen) in the body.

Aromatase inhibitors are problematic. Significant numbers of women discontinue taking these medications prior to the planned end of treatment, and this is due mainly to side effects (Kadakia et al., 2016, The Oncologist).

A year into this, I can completely relate. When I was on tamoxifen, the side effects were less well-defined. With letrozole, they’re unmistakable.

Most infuriating are the physical ones, especially the arthralgia (joint pain). I’m an ardent exerciser, regularly engaging in rowing, lifting weights and interval training. Arthralgia puts obvious limitations on my workouts. Maintaining muscle is harder and as a result I need to work out more intensely. So I push it, but it feels like I’m treading water with an anvil tied around my neck. I know that working out and building muscle is going to be tough at age 54, but I question the benefits of a drug purported to lessen the chance of cancer recurrence when it’s affecting my ability to engage in something (exercise) which is strongly associated with a decreased risk of cancer (Cannioto et al., 2020, JCNI). It doesn’t seem to make sense.

No matter how tired I am in the evening, some nights are restless and NOT refreshing.

Another effect of the drop in estrogen is fatigue, which can be intense by the end of the day. Then, okay, I go to bed early, but my sleep quality is hit-or-miss. Sometimes I experience weird “restless leg” symptoms. This is a “gripping” or aching sensation that can only be aleviated by moving my legs. Any position that feels comfortable at the moment soon won’t, and I do an awkward dance as I move around in bed. Not a great recipe for falling asleep. Luckily this doesn’t occur every night, but when it does, it impacts the next workday.

As a side note, I usually take magnesium supplements before bed, not only to aid in muscle recovery, but also to help with sleep. I don’t know what my nights would be like if I didn’t take them regularly, and I’m not willing to find out.

Over time, the pain in my joints and limbs has increased. It’s most pronounced in my fingers, toes, ankles, hips and elbows, and I’m generally most achey as I’m going to sleep and when I wake in the morning. Sometimes it’s bad enough that it wakes me at night–usually a burning sensation in my fingers and toes–but that happens only occasionally.

By the way, in case you’re wondering if that’s bone metastases instead of side effects, trust me, I’ve already thought about that. I’ve also done the obligatory googling, and while I’ll let my oncologist know about the pain at my next appointment, I don’t think it’s metastasis. These symptoms are just your garden-variety letrozole side effects.

One of the most striking physical side effects (that I could actually show to other people!) didn’t kick in until about Month 8 of taking the letrozole, when the stiffness in my fingers escalated to the point where several of them would lock up in the morning. If I made a fist and then attempted to open my hand, a few of my fingers would “stick” and, as I continued to try to straighten them, they’d suddenly sproing open.

I’ve already mentioned the physical fatigue, but there’s a deeper, darker side to this, which I’ve written about previously. The rest of my family — husband and two teenagers — are up and lively in the evening as I’m dragging my sorry butt to bed. I feel a strong disconnect from them. More specifically, I feel old, which is not surprising, since decreased estrogen is associated with ageing. I feel like I don’t belong with my family anymore, like there’s a distance between us. So, I’m taking a medication to help prevent a possible recurrence of my breast cancer, but the price I’m paying for that reduced risk seems pretty steep.

The disconnect from my family makes me feel alone…and old.

Adding to that feeling of disconnect is the sudden drop in my libido. Perhaps this would have been easier to take if I were single, or divorced (which is the direction it sometimes feels this is heading). I’ve already written about the issue here so I won’t rehash all my frustration. Suffice it to say that while sexual side effects are mentioned in the scientific literature and in doctors’ offices, they’re not really talked about from the standpoint of the effect they have on relationships. This is one of those intangible issues that is difficult to quantify and even more difficult to discuss.

There are also cognitive problems that involve (1) concentration, (2) focus and (3) memory. Listen, I need all three of those for work. I cannot express how crippling it feels trying to learn new convoluted financial software when my brain simply refuses to cooperate. Truly, taking a mindfulness break helps immensely, but it simply doesn’t solve the problem. It just keeps me from putting my fist through my monitor.

Ah, yes, irritability. Put that down as another side effect.

This would be me. If I were a baboon. And used the Oracle Financial System.

So I’m a year into letrozole and I’m searching through the scientific literature to see what, truly, are the rates of recurrence for women who discontinue the medication prematurely, and what other factors come into play in terms of reducing risks.

My goal is to get through at least five years of combined endocrine therapy (tamoxifen and letrozole), and I’m already more than halfway there, having finished two years of tamoxifen before I got on the aromatase inhibitor train. I mean, only two more years of this.

Maybe I’ve hit the high mark of side effects and they won’t get any worse? Maybe?

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Note: the side effects I’ve mentioned are not the only ones that occur with aromatase inhibitors. These are simply the big ones for me. Before you start any treatment, make sure you discuss with your oncologist what sort of adverse reactions you can expect and what you can do to mitigate them.

Maybe It’s Okay To “Overreact”?

After cancer, overreaction may be called for.

So it’s Saturday and I’m sitting in my general practitioner’s waiting room, having been able to secure an emergency appointment. That morning I started seeing light flashes (photopsia) in the outer periphery of my left eye. Very weird, sudden and striking, like little comets whizzing up and down along the curvature. I know I shouldn’t immediately rush to the uncurated internet for information, but who can resist when you need answers fast? After a quick search I saw some of the possible causes, including retinal detachment and Vitreomacular Traction Syndrome (VMT). My symptoms were pretty spot on as I realized I had some significant floaters in my eye too, more than usual.

Further reading pointed to aromatase inhibitors (the estrogen-squashing medication given to breast cancer patients with hormone positive tumors, after they’re done with surgery/chemo/radiation) as a potential contributing factor. As explained on the American Society of Retina Specialists’ website: VMT syndrome is most common in older adults and women due to age-related vitreous changes and vitreous liquefaction associated with declining post-menopausal estrogen levels, respectively. 

Great. I am taking the aromatase inhibitor, letrozole. And so far, it’s been highly effective in dropping my estrogen/estradiol to basement levels. Like, 80-year-old granny levels. Except that I’m 54 years old.

I do NOT want to wait on getting my eyes checked out! I learned from cancer that procrastination turns an easy fix into prolonged treatment.

So now I’m waiting to see whether what I experienced really does have to do with my unnaturally-low-for-my-age estrogen, or if it’s nothing to worry about. My GP’s office couldn’t do a retinal scan, but as soon as I get approval from my insurance, I’m jumping on the first ophthalmologist appointment I can get.

Before cancer, I would have brushed the symptoms off as just some passing oddity. I doubt I would have taken action unless the symptoms had persisted, and even then, it might have taken weeks. I wasn’t primed to react.

But now, while I am *not* panicking, I’m also not waiting. Like it or not, cancer taught me that when it comes to worst-case scenarios, the worst is a distinct possibility.

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If this does end up being VMT syndrome or similar, and if it can be reliably linked to medically-induced estrogen suppression, I’ll be deciding between risking loss of eyesight vs. risking the return of cancer.

But maybe it’s nothing.

Breast Changes, Revisted

One of the most popular posts on this site has been, “I Didn’t Expect THAT: Breast Changes“, so I thought it might be useful to revisit the subject now after a few years have passed since my initial lumpectomy for breast cancer.

Before my surgery, I had been frustrated by the lack of information about how much tissue would be removed along with my tumor. Or maybe I was just too afraid to search. In either case, I had prepared myself to lose a good chunk of my left breast. All the “after” photos of lumpectomies that I found on the internet were not pretty.

However, my tumor was only 1.6cm at its longest, and was on the outer upper quadrant of breast, and this turned out to offer me the best of all possibilities. There was amazingly little breast size lost. I was impressed. So was my surgeon.

So, fast forward to now, three and a half years down the road. The scars, one for the lumpectomy and the other for lymph node excision, remain very uninteresting in a good way. Only three sentinel lymph nodes were removed, and the scar for that sits up in my armpit. The lumpectomy scar is situated a bit further down and into the side of my breast. But it’s not obvious.

This is the original photo from my post on Nov 1, 2018, already over a year and a half since my surgery.
Three and a half years after surgery, today: the top scar is the lymph node excision, the bottom one is the lumpectomy.

The biggest issue I have had with the lumpectomy scar is that the scar tissue there feels like a biggish lump itself. Not frightening for me anymore, but when I went to a new gynecologist who, I suspect, forgot that I had had breast cancer (HOW? That’s the main thing I talked about!), she felt that area and said, “Oh, there’s something here” in that ‘I’m-going-to-say-something-scary-in-a-calm-voice’ kind of way.

Yes, it was just my scar tissue, but for a split-second I wanted to let myself freak out. Didn’t, but wanted to.

Sorry about the headlights…I just wanted to show how “normal” the shape of my breasts is. The weird thing is that it’s actually my left breast that is a bit BIGGER now. Who would have expected that? (NOTE: my left breast is also turned towards the camera slightly, accentuating its size.)

But the bottom line is, as time has gone by, the scars remain inconspicuous, and if not for the fact that my affected breast is actually a touch firmer and larger than the healthy one, something attributable to radiation treatment, there’s no obvious sign that I had breast cancer.

Not a bad deal considering what could have happened.

(Almost) Six Months on Letrozole

WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.

First a bit about aromatase inhibitors: according to breastcancer.org, “Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” Think of this as starving a hormone-positive cancer of its food.

Aromatase inhibitors have been shown to be more effective than tamoxifen, with fewer serious side effects, although they are certainly not risk-free as they can cause “more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen.” (breastcancer.org)

When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.

I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.

The letrozole pill looks so teeny and cute – how bad could the side effects be?

So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.

Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.

My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.

Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.

I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.

It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.

When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.

Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.

My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.

Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:

And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.

And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.

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So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.

And Now We Wait…

Last Monday night my daughter and I noticed that we had sore throats. No big deal most of the time, but we’re in the middle of a global pandemic.

Of course, a sore throat can develop for a number of reasons. And we’ve been washing our hands, using hand sanitizer when soap and water aren’t available, keeping our distance from people. Nothing much to worry about, right?

Right. Except that it seems like a sibling of mine had actually suffered through an illness resembling COVID-19, with first symptoms appearing over a month ago, with a gradual onset. At that point, like many in the United States he wasn’t in a position to get tested (and with a fever of 103.9, he wasn’t about to drive himself to the doctor).

Now, I haven’t been in physical contact with him for about a year. But since I had a sore throat, I casually asked him what his symptoms were. I mean, I wasn’t exhibiting the same COVID-19 indicators everyone talks about.

Here we go again.

Apparently, his illness also started with a sore throat, no other symptoms for about a week, at which point the cough started. That was followed by a shortness of breath and fever, including two days that the fever was dangerously high. Eventually, the symptoms subsided, with the sensation of an elephant sitting on his chest, along with a lingering cough, being the last to go.

This would be extremely disconcerting to me, if not for the fact the sore throats that both my daughter and I had lasted only a few days before going away.

Phew, right? Well, kind of. Because if this had been COVID-19, we would have been dealing with the monster head-on. Now, we’re prepped for a fight with no opponent. Back to being vigilant, washing hands and crossing fingers.

Sound familiar? Any cancer survivor will tell you they’ve been down this road. It’s all about the waiting, trying to shed the anxiety about cancer coming back. Trying to shed the hypervigilance. There is no “end date”, there’s just an “I’ve made it this far so maybe my risk is decreasing?”

With COVID-19, we experience that lack of “end date” on a smaller scale. Eventually, there’ll be a vaccine. But we have no idea how long we’ll be waiting and how long our lives are going to be so drastically different. However, relief will eventually come and we can exhale.

As a cancer survivor, I’m kind of jealous.

A Funny Thing Happened on the Way to My Mammogram

Of course, maybe not funny at the time. File this under, even the best laid plans can be undone.

I had been preparing mentally for my mammogram over the past weeks, and everything was going smoothly. I had a nice mammographer, not overly chatty, very matter of fact. There were video screens on the walls of the mammography room projecting peaceful nature scenes for me to watch as I got squooshed, as if ocean waves would make me forget that my breasts were being clamped in a mechanical vice.

Then, finally, I was done and back in the intimate waiting room. There were only two of us women there (along with my husband, who, since my breast cancer diagnosis, no longer lets me get scans alone). The other woman’s mammographer came out and told her that everything looked good and she was free to go; they’d see her in a year. She happily left.

Several minutes later, my mammographer came out and said something along the lines of, “The doctor is looking at your scans. I’ll bring you to the consultation room so that we don’t have to talk out here.”

Had I not just heard the exchange between the other woman and her technician, I would have been fine. But since I’d heard it, my heart started to pound. My husband and I were led to a cozy little room…with an array of informational pamphlets about biopsies and breast surgeries on a side table, and you can imagine where my mind went.

Forget mindfulness, forget non-attachment, forget letting go of expectations. Forget three years of daily meditation. I was terrified. I tried slowing down my breathing, but it only made me feel like I was being starved of oxygen.

I unloaded all my fears on my husband, who up to that time, was not experiencing the same level of concern.

“I don’t feel good about this. Why did they bring us into this room?”

“They always bring us into a separate room.” He was right, we always went to a consultation room for the results. But the other woman hadn’t.

“Why are all those pamphlets there?” I motioned to the biopsy pamphlets on the table.

“They’re always there.”

“Why did they tell the other woman out in the hall?”

“Maybe because you’re having a 3-D mammogram so there’s more to look at, or maybe because you’re a cancer survivor, and they probably bring all the former cancer patients in…”

Yup, I was having flashbacks.

Yes, he was giving me solid, rational explanations, but I would have none of it. I was in the middle of a “fight or flight” moment and struggling to regain composure, but it was too much.

I simply could not let go of intense feelings. They were too much like what I’d experienced three years earlier, at a time when I so desperately feared bad news. And then got it. It’s difficult to articulate what that feels like to someone who hasn’t experienced it, but if you’ve been there, you know exactly what I mean.

Throughout all of this, however, there was a small, reasonable piece of my brain that was collecting data. I had noted the time when the other woman had received her news (1:20pm), so I would have a better idea of how long this was taking. I sensed the tightening in my muscles and attempted, with difficulty, to release them. I’d been frozen into a block of ice and was trying to chip my way out with a butter knife.

Then at 1:27pm, the radiologist knocked and came in.

In that first fraction of a second that I saw her face, my brain ran a scan of it, and it told me…nothing. I’m betting that doctors are honing their “stone-face” look, so as not to give a clue one way or the other. My radiologist said hi and stretched out her hand, I shook it, and she told me everything looked good.

Just like that.

The rational part of my brain exhaled, but it took hours for my body to shake off the hype. By the evening, I felt like I’d gotten a year’s-long extension on a tenuous lease. So, I thought, I have another twelve months do something useful with my life. Go!

A week later, when I told my oncologist about this mammogram episode, he explained that as a cancer survivor, I get diagnostic mammograms from now on, and those always involve a consultation with the radiologist afterwards.

Oh. I’ll try to remember that for next time.

Addendum to “Chemo Nails”: Healing

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.)

September 6, 2017: the left hand again with bruising visible on the side of the ring finger. Its nail looked like it was about to drop off, but it was actually holding on quite well, not that I was about to fiddle with it to find out. From this angle the middle finger looked black with an uncertain future. The left hand looked like it had been on the losing side of a bar flight. Nonetheless, my poor body, still recovering from the shock of chemo, was hard at work getting everything back in order.

September 6, 2017: just over a week after my ER visit, the left ring finger was normal-sized again but clearly showing the damage from the infection in the form of a significant bruise. The middle finger wasn’t looking that hot either.
September 6, 2017: in the meantime, the right hand was shaking off the chemo infusions. While it seemed like the nail beds had shrunk, the growing nails were doing well.

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.

September 13, 2017: this photo offers a better view of how much the left ring finger had healed over the course of two weeks. Even after having a seriously suppressed immune system, recovery from the infection progressed remarkably quickly.
September 13, 2017: still hanging on. While the nails looked horrible, there was actually considerable improvement.
October 19, 2017: the right hand was looking almost completely normal!
October 19, 2017: a month after the photos above, healing is well on its way. I didn’t lose a single nail, the dark discoloration disappeared and everything was growing.

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!”

October 24, 2017: …and the right hand looked normal enough that you wouldn’t have thought anything had happened…if you hadn’t seen my scalp, the hair on which took its sweet time coming in. But that’s another post altogether.
October 24, 2017: a week later, after a good nail clipping, the left hand was no longer scaring children and small animals. I felt human again!

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 Didn’t Expect THAT: Chemo Nails

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.

July 30, 2017: My left hand’s fingernails at the time of my fourth infusion.
Same day, right hand. The chemo drugs were beginning to leave their mark on my nails.
August 13, 2017: a few days after my sixth and final course of chemo, the nails were looking worse.

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.

August 23, 2017: the nails are looking progressively worse.
Same day, right hand.

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, August 25 appointment, although he lamented that I might lose that nail.

August 23, 2017: I noticed some swelling under my left ring finger’s nail and figured that it was starting to lift off and that I’d eventually lose it.
Another view of that “bubble” under the nail.
August 25, 2017: HOW could I have possibly NOT been worried about this?
These photos were taken in the evening after my August 25th oncologist’s appointment, and because he hadn’t been immediately alarmed, neither was I. Just my luck, the 25th was a Friday, and good old “I-don’t-want-to-be-a-bother” me figured this type of thing was normal and I’d wait to see how things looked on Monday.

Saturday, August 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…

August 28, 2017: need I say more? In the space of a couple of days, everything turned nasty. And I do mean, nasty. My nails may have looked ugly before, but nothing compared to this. This was a bad situation getting worse. The pace of deterioration was accelerating and waiting in the ER was excruciatingly painful.

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).

August 28, 2017: the worst part is over. And I’m not dead!
This is one week’s worth of antibiotics. Since the doc didn’t know whether the bacteria were gram+ or gram- he decided to err on the side of caution. I was popping pills every few hours.

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.

With all this going on, my right hand wasn’t experiencing the same agony. It was a classic case of “one hand didn’t know what the other hand was doing”. My right was living in blissful ignorance.

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.