Look, Ma! No Libido!

This is a delicate issue that isn’t talked about enough. It’s time we brought it out into the open.

Based on the reactions that I’ve received from some health professionals, I believe that loss of libido is a highly underreported side effect of aromatase inhibitors, medications that are prescribed to suppress estrogen production in women who have or have had hormone receptor-positive breast cancer; aromatase inhibitors are generally given only to postmenopausal women. Sure, low libido is listed as a possible side effect on the informational insert that you get with the pill bottle, but its mention feels like an afterthought. The reality is, AROMATASE INHIBITORS STOMP OUT YOUR FREAKIN’ LIBIDO.

Why don’t we talk about this more? This may be due to the average age at diagnosis of breast cancer being the mid-60s, give or take. I’m willing to wager that many women of this age don’t feel very comfortable discussing intimate details of their personal life with (especially male) oncologists.

Couple that with the fact that as much as we’re trying to change as a society, postmenopausal women are still not valued very highly. Youth equates to beauty, and women continue to be judged by their appearance. Even the inhabitant of the White House has reflected the notion that an “older” woman wouldn’t be a fit companion for a high-powered man, presumably because he deserves “better”.

So let me stress, everyone deserves the opportunity to engage in meaningful intimate relationships. As we get older, sexual intimacy may not have the same prominence in our interactions, but it is still an important part of bonding.

This is a perfect example of a “quality-of-life” issue. It can’t be measured by a laboratory test, but it’s something very valuable. When the medical profession obsesses about breast cancer survival rates, and when the pharmaceutical industry develops even more-effective medications, those lives saved can be counted as numbers. But sadly, a drop in desire for intimacy, or a similar quality-of-life marker, can’t be measured in the same way and, therefore, doesn’t bear the same weight in decision-making.

Loss of libido can lead to a decrease in perceived quality-of-life

It rankles me when some of these complicated low-hormone effects experienced by women taking aromatase inhibitors are written off as simply symptoms of natural menopause, as if the cancer survivor is making a big ado about nothing. As someone who was premenopausal when originally diagnosed with breast cancer, and then chemically forced through menopause via chemotherapy and tamoxifen, I can assure you, none of this is what my body would “normally” be doing. The change from what I was to what I am is really striking.

I often think, if a medication could reduce the risk of cancer, but you would have to sacrifice your left arm for it to work, it probably wouldn’t sell well. But if the cost weighs heavily on quality-of-life, taking a toll on intimate relationships, that’s perfectly acceptable? Women who stop aromatase inhibitors are called “non-compliant”, as if they’re foolish and don’t know what’s good for them. But maybe doctors need to consider more than just statistics when it comes to treatment recommendations.

So why aren’t we forcing this conversation with more medical professionals? It’s easy to write prescriptions for medications. It’s much more uncomfortable to navigate the complexities of how intimacy suffers from them. The level of detriment will differ from person to person, as will the value of an intimate experience. While oncologists work to improve the length of our lives, as cancer survivors we need to apply pressure in the other direction, to make sure that their decisions are also informed by the quality of our lives.

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It’s important to note that while libido takes a huge hit from hormone-suppressing medications, it’s not even the main reason women stop aromatase inhibitors. There are other side effects that make the medicines difficult to continue. If you are having troublesome side effects, then tell your doctor as soon as possible. If your doctor doesn’t listen and doesn’t offer ways of alleviating your complaints, it’s time to find another doctor.

Sleep Peacefully, Sweet Aira

“[A pet is] a little tuft of consciousness that circles around a person like a moon around a planet, and completes their energy field making them more whole.”

Dr. Rachel Naomi Remen quoting a spiritual teacher, as related by Dr. Nancy Novak on the Nancy’s List email newsletter, November 1, 2020.

There are few reminders of impermanence as poignant as life transitions. I experienced this over the weekend as we said goodbye to our beautiful Siberian husky, Aira. I knew the time was coming and that it was right to let her go, just a month shy of her 15th birthday.

Retirement: living the good life in her “golden years”, in her own room. Lots of naps and loads of love.

Aira’s transition was gentle. My mother held and stroked her as she lay on her favorite rug in her bedroom in my parents house. She fell asleep quietly with the first injection, and after the I.V. drug was administered, passed into peace, surrounded by the people she knew and loved in familiar surroundings.

She now lies beneath the window outside her room, one of her favorite places in the yard to sit during the winter, as it was almost guaranteed to have a snow mound. She loved that. As the days became warmer, that mound was one of the last to melt.

In her younger days, bright with husky energy.

I remember the silkiness of the fur on the backs of her ears. And the unbridled joy she exhibited when she would get loose and start tearing around the neighborhood. And how she would roll around in freshly fallen snow in ecstasy. And how wonderful she smelled after rooting around in a rosemary bush. And how we would find a dog treat hidden in a shoe, under a pillow or anywhere else she thought was a safe spot that she could return to later for a snack.

Everything changes. Aira matured and calmed down. She followed us from Chicago to California, then due to stifling housing constraints in the Golden State, was welcomed by my parents in Connecticut, where she got a beautiful yard, lots of snow and unbelievable amounts of attention. Years after their three kids had left, my parents and Aira formed their own little family unit and went almost everywhere together.

My father’s health faltered and Aira, too, started showing her age. The last year brought on the most striking changes. Aira sprouted a fast-growing mast cell tumor on her shoulder. By the time it was removed, the mass weighed almost five pounds, and her prognosis was guarded. That was in April of this year.

Some weeks ago, my mother noticed a hard spot in Aira’s belly. As with the previous tumor, this one grew lightning fast. And unlike the tumor on her shoulder, this one was among her organs and taking a toll on her. This one was not coming out.

I would lie away at night, wondering how this would end. Had I known how blissfully she would transition out of this world, my heart would not have felt so heavy.

Newly arrived at my parents home in New England, looking forward to the cooler air and, after years of California warmth, SNOW.

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I am Roman Catholic. When I was young, I remember a humble missionary priest speaking of how anyone could baptize someone with the sign of the cross and holy water. So, logically, I pilfered some holy water that my grandmother kept on a shelf and baptized our dog at the time, a good-natured chihuahua named Rudis.

Several decades later, when Aira was part of our family, I was already an adult (so I have no excuses), and as I was holding a small vial of holy water brought back from mass, Aira came to sniff at it. I thought, “Why not?” and baptized her.

I’m sure that I’ll be punished for this brazen transgression. And you know what? That’s okay. I hope that I’m banished to the place where animals go after they die, because I’d rather give up my spot in Heaven to spend eternity with my dogs.

There Goes Another Cancer Milestone…Big Deal

On October 23, 2017, I finished radiation therapy for my stage 1, triple-positive breast cancer. That was three years ago. At that point, I imagined myself being through all the “tough stuff”. I’d already had surgery that March, spent the summer enduring chemo infusions, and then six weeks of radiation in autumn.

October 23rd seemed like a “marker” day. I rang the gong in the radiology waiting room, with all the staff present and smiling. It was a day that I knew I’d remember.

Except that it didn’t end up being a very important milestone. At that point, I didn’t fully realize that the treatment doesn’t really end. I can only say that it’s been three years since I finished chemo and radiation. But the truth is that a few weeks after that I started tamoxifen (surprise!), which came with its own worries. And I still had more than half of my infusions of Herceptin (trastuzumab, a monoclonal antibody) left, which stretched into April of 2018.

I guess next April, I’ll mark THAT as another milestone.

This coming December I can mark a full year of taking letrozole (aromatase inhibitor), which came after two years on tamoxifen. But I’m still supposed to be on that stuff for “a few more” years – it’s funny that my oncologist has not been specific about that. And I’m not very interested in asking, unusual for me.

I really thought I’d have said “goodbye” to all things cancer by now, but its spectre still seems to follow me around.

What once seemed like a very clear treatment plan, a definite path through the cancer jungle, now seems fuzzy and gray. In one of my first posts here, I talked about being able to put everything behind me, with the more time that passed after “finishing” chemo and radiation. Who was I kidding?

When mammogram time comes up, there’s that familiar rush of anxiety, knowing that I’ll be sitting in that comfy robe in the quiet waiting room, pretending to enjoy a cup of tea, but my tummy will be floating and I’ll try to not to think of much. That’s the work of cancer.

When I wake up in the middle of the night with my hand aching and fingers painfully stiff, medication side effects that are deemed, by the medical community, to be “worth it”. That’s the work of cancer.

When I wonder whether my 18-year-old daughter should be doing breast self-exams now. And whether she’s be hurt by whatever “mistake” my body made in not cleaning up some tumorigenic genetic defect. That’s the work of cancer.

So it makes all those “milestones” a little less fun and exciting.

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But I have to be honest — I still note the time that’s passed by. For my breast cancer, the two-year mark is most important, followed by the five-year mark and then the 10-year one. Each year cancer-free makes me more cocky. But the truth is, one “bad” scan, and I’m back to square one: cancer patient. And then I’ll regret not having appreciated those milestones more.

The Magic of the Exhale

If there is one thing that I can point to that has had the most profound effect on my reaction to anxiety-provoking stimuli, and also brought more calm into my entire day, it is deep, diaphragmatic breathing.

Diaphragmatic breathing (sometimes referred to as “belly breathing”) is an effective way to bring air into the lungs than simply inhaling into the chest. As the belly pushes outward, it pulls the diaphragm down, allowing the lungs to fully inflate.

This deep breath, in conjunction with my favorite breathing pattern — Dr. Andrew Weil’s 4-count inhale, 7-count hold, 8-count exhale — is what I call my magic pill. I have found this type of breathing to be very soothing. Dr. Weil based the 4-7-8 pattern on pranayama, an ancient yogic breathing technique, but the benefits are well-supported by modern science (Gerritsen & Band, 2018, Front Hum Neurosci, for example).

Neuroscientifically Challenged presents a short video introduction to the vagus nerve: “2-Minute Neuroscience: Vagus Nerve (Cranial Nerve X)“. It’s everything you never knew you really needed to know about the vagus nerve.

For me, it is the extended exhalation that is key. When the length of the exhale equals or particularly exceeds that of the inhale, a signal is sent to the vagus nerve. The vagus nerve is the 10th cranial nerve, and the longest one, running from the brain down to the abdomen, innervating a number of major organs along the way. The vagus nerve is also a major part of the parasympathetic nervous system (think: “rest and digest”) (Breit et al., 2017, Front Psychiatry).

The extended exhale has been shown to increase heart rate variability (HRV), slow down the heart rate itself and relax the body. HRV “represents the healthy fluctuation in beat-to-beat intervals of a human or animal’s heart rate. … Higher HRV is associated with stronger vagus nerve function, lower chronic stress levels, better overall health, and improved cognition” (Bergland, 2019, Psychology Today).

When I notice that I’m rushing through my day or experience wakefulness in the middle of the night, I have learned to turn my attention to my breath. Regardless of whether or not I’m feeling anxious, I often find myself breathing more rapidly and shallowly (chest breathing). As soon as I become aware of this, I take a deep, diaphragmatic breath and deliberately extend the exhale.

That first deep breath makes me realize how much I needed to slow things down.

That first deep breath is like putting the breaks on a runaway locomotive. It make take several more breaths to fall into that full pattern. I don’t force it — I simply allow each breath to be slower and deeper than the previous one. The sense of grounding feels amazing. I keep a lot of tension in my neck and shoulders, so I take care to release those muscles with each exhale. The result is that I feel a gentle sinking and relaxing.

One of the ways that I’ve benefitted most significantly by taking a “breath break” like this is that it has linked my formal, “on-the-cushion” meditation to the rest of my life. Even after I had established a daily meditation practice, I struggled to bring that same sense of calm into the rest of my day. Breathwork was the missing piece of the puzzle.

This deep breathing slows the overwhelming rush of sensations and provides an immediate connection to “now”, inviting stillness and spaciousness. Noticing my breathing in the midst of chaos exercises mindfulness. All this results in a sense of contentment and well-being.

Who wouldn’t want that?

How Mindfulness Helped Me Enjoy Cleaning

Full confession here: For years (ahem, decades), I disliked cleaning. I understood the importance of keeping things clean and tidy. But I never connected a positive feeling with it. Even as an adult, I would put it off. And off. And then someone would want to stop by and I’d be filled with dread. Never was the disheveled state of my home as apparent to me as when an outsider walked though the front door. Suddenly, I saw everything with fresh eyes, and it didn’t look great.

My approach to cleaning changed when I did one small thing: I noticed that my life was not one big overwhelming mess. It was a series of little challenges. So, too, my home. I stopped looking at everything as a whole. The whole was overwhelming. The whole meant a day spent cleaning and organizing. It didn’t have to be like that.

Just as life is in flux, so is the order in your home. Think of is as a wave, never, standing still. Things fall out of order and then are put back in order. Consistency in effort is what gives music to the dance. So you never have to “miss it”.

When I started looking at the work as distinct items, it was so much easier to take care of things. A small pile of papers. Scrubbing out the kitchen sink. Cleaning three windows.

It was that simple. I stopped thinking about “all the stuff I need to do”. Instead, I thought, “Oh, look! This is done already.” The boost of positivity that I got from taking care of the finite tasks was infinitely rewarding.

Most importantly, I made this a working meditation. My focus was on “now”. Scrubbing this spot of the bathtub. When it was done, I went to another spot. And that way traveled around the bathroom and out to other rooms until I was done for the time being. The rhythm made the day bright.

My personal strategy for cleaning mindfully:

  1. Set a timer for a reasonable amount of time, say, 10-15 minutes — you will quickly find a time that’s right for you based on how much you bristle when it’s time to start. Pick out a manageable “project” (or perhaps several) that you can get done during that time. Start when the timer starts. When the alarm rings, you’re done.
  2. Whatever you are doing, do it with a focus on the present moment. Give your full attention to what you’re working on. This is not the time to worry about what else needs to be done — stay with what you’re doing now, just as you would stay with your breath during meditation.
  3. Decide to do it again tomorrow. That stuff you did today? It’s done and no one can take that away from you, so whatever you do tomorrow only adds to the satisfaction of moving forward. Consistency is what makes this strategy work.
  4. Bring lightness and joy to the task. Play music, run an essential oil diffuser. Mark your success with staying on task by bringing in fresh flowers, even just foliage clippings in a colorful vase. Help yourself feel positive through the process. THIS IS NOT A PUNISHMENT.
  5. Pick up after yourself throughout the day. There is great power in putting things away right after you’re done with them. It feels so silly to even have to write that, but trust me, it’s a useful reminder, and one that I needed until it became a habit. (Who am I kidding? I STILL need the reminder.)
  6. The corollary to #5 is not to procrastinate on starting. If you start now and recycle five papers that you don’t need, there will be five fewer papers cluttering your desk. If you do that again tomorrow, that will be ten. Do it now. I have missed out on so many wonderful opportunities in my life because I put things off, a clean home being the least of them.
  7. Notice how good it makes you feel to invite order into your life.
I feel unsettled simply looking at this image. The disarray elicits anxiety, like I’ve lost something important, with little hope of easily getting it back.

I’ve found that the state of my surroundings is representative of my emotional state. And my emotional state likewise responds to the environment around me. When I was diagnosed with breast cancer, my world crumbled around me, physically and emotionally. Everything felt out of control and my surroundings reinforced that sense of despair. It took months for me to finally get a grip and move past the overwhelm.

Bringing order into my life was like an anchor that helped me recover, in many senses of the word. When I focused on what was good in my world, I spent less time worrying about what was wrong.

I’m betting you have 10 minutes in your day…

Mindfulness Apps I Love: “Unwind”

Disclosure: I was approached by Unwind‘s developer to review their breathing app and offered a free upgrade. I appreciated the suggestion to try Unwind because these days I’m all about breathwork. In addition, upon reading about the app in the iPhone App Store, I was impressed with both the concept and the developer’s sincere responsiveness to user comments. You can find it in there App Store here.

I’ve been using the Unwind app for a number of weeks now. It is a lovely breath-focused app with a number of unique features that I love, customizable and easy to use.

Unwind offers three breath exercises, all of which I which I recognized as science-backed for specific purposes: (1) the “Start fresh” pattern (6 counts in, 3 counts out) which brings oxygen into the body and energizes you; (2) the “Relax & unwind” pattern, great for a relaxation break during the day (4 counts in, hold for 4 counts, 4 counts out, hold for 4 counts); (3) the “Sleep better” pattern, perfect for deep relaxation before bed (4 counts in, for 7 counts, 8 counts out).

The user can pair these patterns with a specific ambiance. An ambiance is a themed background soundscape, and Unwind offers a broad range with options such as Rainforest, Rain on Umbrella, Village Backyard, Open Air Cafe, Japanese Pagoda…including unique ones that I haven’t found in similar apps such as Deep Space, Swimming with Whales, Castle and City Skyline with Ocean. At last count, there were 33, so there’s a flavor for every mood.

Breathing in, the landscape moves up.
Breathing out, the landscape moves down.

Each ambiance has a visual associated with it, and I really like the way the breath is represented in Unwind. In other apps, the breath is often shown as a ball, but in Unwind, it’s the selected ambiance’s landscape, with a foreground and background layer rising and lowering with the inhalation and exhalation. The images are uncomplicated and not distracting, but easily recognizable. There are also additional visual cues: a circle that represents time elapsed in a session and a line that represents breath “hold” time.

Sometimes I play an ambiance by itself, allowing my imagination to create my own imagery, or simply to use it as background sounds while I’m working or drifting off to sleep.

The settings give you a variety of options for customization.

You can chose between a male and female voice for inhalation/exhalation guidance: “Seth” or “Emma”. I’ve tried both and found that I’m more drawn to Emma’s voice, but I appreciate the ability to switch between the two. Also, it seems like there’s a slight change in voice inflection between some of the guidance cues, so even though the spoken words are the same, it doesn’t feel like you’re listening to a robot. That’s nice attention to detail!

This is the ultimate in making the app your own: you can stick with the pre-set breath exercises, or modify them to your liking.

Another lovely customization is the ability to adjust the breath lengths for each of the breathing exercises. While the established counts are research-supported, if, for example, the 7-count hold happens to be too long for you, you can adjust it. This means that you have the ability to completely personalize your breathing patterns, a valuable feature that I don’t usually find in apps like this. Of course, you can also choose the total length of each breathing session.

Finally, after each session, you have the opportunity to select a little emoticon that represents your mood, and there’s space to write your thoughts, should you want to jot down a few notes.

Because I feel that mindfulness, relaxation and breathwork should be accessible to all and not limited to those who are able to pay, I held off on the upgrade that I was given to me so that I could try out the free version first. My experience was not diminished at all, and that was really important to me.

Eventually, I did upgrade, which gave me access to the entire list of ambiances, which otherwise are locked. However, even in the free version, you can access some (or all — sorry, I upgraded before I found out!) additional ambiances by maintaining your practice streak, which is a lovely perk. Upgrading also enables you see all your past sessions and notes. But there is no subscription, which sets Unwind apart from other apps of its kind. There’s only a flat, one-time fee (at this writing, $5.99). I really appreciate that and would have happily paid it myself!

The bottom line is that I love this breathing app! Its obvious that the developer put a lot of thought into it, with a definite focus on the needs of the user. Unwind is the ideal complement to the other meditation apps that I use, and perfect for whatever breathwork I want to do. Because most of the features are accessible without the upgrade, I recommend trying this out to see if it works for you. If you do decide to upgrade, it’s a small investment for immediate access to all the ambiances and logged notes, and in my mind, well worth it.

Hanging Tough With Letrozole — Or Not

There seems to be so much back-and-forth in the life of a breast cancer survivor. I really thought things would settle down eventually, but it seems like they refuse to.

The ultimate goal, of course, is to squash the risk of cancer returning, but the way medicine goes about it is not always kind to the patient.

Let’s back up. First, there’s the shock and anxiety of being told you have breast cancer. Because the average age at diagnosis for women is 62, most of these women grew up at a time when cancer was strongly linked to death. While treatment, and therefore survivability, has greatly improved in recent decades, a cancer diagnosis is still frightening.

That life-saving treatment comes with a reputation for nastiness. Surgery seems like the easy part; it’s the chemotherapy and radiation that we’ve heard horrible things about. I myself had six infusions, each three weeks apart. I assure you, I memorized the calendar, knew the dates of the infusions and the order of my drugs. Even about what time each one would begin on the infusion day. I counted the minutes to the end. Then came radiation, but that seemed like a cake walk in comparison.

Once through ALL of that, you figure that the treatment portion of your cancer is over and you have the rest of your life to ride into the sunset, basking in the warm glow along the way.

But for those of us with hormone receptor positive (HR+) cancer, there’s this little thing called endocrine therapy that seems like an afterthought when you’re going through the “tough stuff”.

Yeah, you think you’re done, but then you realize, there’s more…

Yet it does feel like a slap in the face when you’re “done”, because you’re not really done. And that’s where we find out that while chemo and radiation were the “running the gauntlet” phase of cancer — abusive, but time-limited — for many, the hormone therapy afterwards is like doing the Ironman triathlon. Except the water, bike and road are on fire. Because it’s hell.

Okay, about here is where I have to stress, my experiences with tamoxifen and the aromatase inhibitor letrozole (Femara) have not been as brutal as for other women. At the same time, they’ve not come without complications. Currently, I’m dealing with painfully stiff joints, weird bone pain, loss of libido (hubby’s fave), hair thinning (grrrr, I thought I was done with this when I finished chemo!), memory issues (wait, what?) and other side effects that I’m pretending I can ignore.

On the bright side, it is gratifying to know that what I’m experiencing is not all in my head, nor is it as bad as it could be. In fact, I found a valuable post (one of many!) on the blog Nancy’s Point, entitled “The Dark Side of Aromatase Inhibitors“. Not only is the post a great read, but what makes it so eye-opening is the comments section. Nancy invites readers to share their experiences, and wow, do they!

If you choose to venture there, keep in mind that everyone reacts differently to these medications. People with negative reactions may be quicker to share than those with less extreme reactions.

So if you’ve been told that you need adjuvant endocrine therapy following the “main” cancer treatments, do your homework. PLEASE know that not everyone has miserable side effects from them, and I strongly urge you to give the medications a try to see how well you tolerate them. You may surprise yourself. Note what side effects you’re experiencing and the date of onset so that you verify that the reaction is related to the drug.

Then, if you truly cannot handle the discomfort (no shame there!), you will be able to show why. Discuss other options with your medical team. Whatever amount you were able to tolerate will offer you that much more protection, and that will still benefit you.

For everyone else, hang in there!

How Do You Want To Feel?

I’ve really been enjoying a guided meditation on Insight Timer by Australian trainer and life coach Emma Polette, entitled “Morning Visualisation Meditation”. In fact, it’s been the first meditation that I’ve done every morning for the past month. What makes me like it so much? It reminds me that I can choose the emotional state with which I enter into my day.

Emma facilitates this by instructing the listener to “allow yourself to feel how to want to feel today.” I love this concept! So many of us want to be calm or happy or courageous, but we look at it as a cognitive endeavor and get nowhere with it. Emma reminds us to actually feel what it feels like. If my goal is to feel peaceful, then I imagine what it would feel like, if I were actually peaceful – I generate those feelings in my body.

By feeling into the sensations of a positive state, we can lessen the severity of negative emotions. It takes consistency and practice, but is worth the effort.

This takes practice and focus, but the payoff is wonderful. Think of it as establishing a new habit – repetition is necessary in order to seal it into your daily routine. The more you bring up those feelings in your body and really feel into all the different sensations associated with them, the easier it is to invoke that feeling the next time. And that next time might be a time of stress, when you’re in particular need of soothing.

Just as you may associate a meditation cushion with a sense of grounding, or a certain time of the day with a mindful mood because that’s when you always meditate, you can also improve your ability to bring up positive sensations that help keep you present and calm. All it takes is consistent practice.

I should mention that this is not to suggest that if you’re feeling strong negative emotions or succumbing to anxiety it’s a flaw of some kind. There will be numerous occasions when we get swept up by distressing thoughts. Sometimes it will be hard to release them. And that’s okay.

But I find it very empowering to start my day in a positive frame of mind, knowing that I am not helpless against stressors. Just as how in mindfulness meditation when we realize that we’ve lost focus and have slipped down a rabbit hole, we simply return to the breath, we can also notice how it feels in our bodies to experience stress or anger or whatever negative emotion settles down on us.

It might be a tightness in the chest that shortens our breath and sends our heart racing. It might be a cold sensation in our stomach and lower abdomen that elicits nausea, or it may be a hot flush that toasts our cheeks. With the awareness of what we are experiencing in the moment, we can gently breathe through those bodily sensations, relax the agitation and then remember how it would feel to feel the more pleasant sensations that we’ve practiced every morning.

How would you rather be feeling right now? Can you feel it?

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.

Not A Cancer Superhero? You Are Still Enough

After reading about the tragic passing of actor Chadwick Boseman at age 43 from colon cancer, in addition to his nothing-short-of-heroic efforts to persevere with his career and charitable acts while facing cancer treatment and a worsening prognosis, I was moved with emotion. First, for the loss of an immensely talented actor who would have had a long and bright future. Second, because knowing how society looks at cancer sufferers, he would not have gotten the roles he did had he been open about his diagnosis. 

And, third, for the rest of us run-of-the-mill cancer patients. When I was going through treatment, I wasn’t a hero. I was scared. I didn’t keep my illness a secret so that I wouldn’t be viewed as “uncastable” like Mr. Boseman might have been, or so I would be unhindered in my drive to achieve great things, as other notable cancer patients have. At least the ones who are written about in the media.

Me? I was barely holding on.

Everyone knew about my diagnosis, especially those who saw me on a daily basis. I didn’t want people to speculate about my condition once I started losing my hair and missing work, so I made sure to get the word out. But the real battle I fought was much more personal and invisible. My nemesis was anxiety, and I entered that fight ill-equipped to win it.

It may not feel like it when you’re hearing about the accomplishments of others, but just showing up is an achievement when it comes to cancer.

So while I was dragging myself around to doctors’ appointments and cancer treatments, I was churning inside. There were days I wanted to numb out and curl up in a corner. But I went to the office. I smiled at coworkers even when I was nauseated by anxiety. That’s it. No great feats, nothing that others could remark favorably on or report in the news. I didn’t feel strong or brave and certainly not like a hero. I simply existed. 

It would have been so cool was to have bravely fought cancer while still racking up amazing accomplishments. To be the one about whom people would say, “And she did ALL THAT while undergoing treatment!” No, not me. Not everyone is in a position to be that superhero.

So the point I want to make is that you will hear of the cancer patients who are truly inspirational, and I, along with everyone else, am awed by their strength of character and ability to continue in the face of a life-threatening illness. But there are also many of us that limp along day by day, trying to keep our lives together after they’ve been torn asunder by a cancer diagnosis. We’re not going to get accolades for making it back to work after five days of nausea. But we persevere in our own inconspicuous ways. Perhaps you’re one of those.

And that’s enough.