Making It Through “Now”

My recent post, Just Show Up, about releasing the need to fight through breast cancer treatment, left out an important concept.

My cancer diagnosis was what I deemed the “worst-case scenario” from the viewpoint of everything that came before. The overwhelm was a tidal wave that caught me and spun me around. Disoriented, I struggled to breathe and find my footing, but it was too much and I was poorly equipped to deal with the news.

Taking on everything at once doesn’t help you keep it together, it tears you apart.

I went through the motions, stumbling through the appointments that now multiplied in number. There was so much information to wade through, decisions to make, upcoming treatments to fear.

Then a co-worker whose wife had been diagnosed with cancer some years before sat down with me and gently offered a valuable piece of advice.

I didn’t have to handle everything at once. Some the decisions could be made later. Each day would bring answers and more clarity. There was no need to load up on all the information. It didn’t help anyone get through these days, all it did was weigh them down.

The path through this entailed focusing on what needed to be done now, and then working on doing that and only that. Just taking that one easy step forward.

All that stuff in the past and the things to come, you can release them. Don’t carry that extra burden with you. Just focus on what’s happening now. And now.

Could you get through the last moment? Good.

Now just get through the next.

Just Show Up

The thing about cancer is that the news hits you hard at once.

And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.

It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.

Everyone’s pushing you to fight, fight, fight. It sounds like the right thing to say, but it can feel exhausting.

As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”

So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.

I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.

And then it hit me. All I needed to do was show up.

I put the gloves away and realized I didn’t need to fight anything. I needed self-compassion.

I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.

I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.

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I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.

Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.

When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?

And Here We Go Again…

If there is a time that I’m going to feel anxiety, there’s a good chance it’ll be during my yearly mammogram. This year it came around the same time that my oncologist gave me permission to stop letrozole (and there was stress preceeding that appointment), but also great fear associated with my perceived cardiac arrhythmias, for which I have several visits with a cardiologist lined up.

Sometimes it feels like the stressors keep coming and coming.

To top that off, a family stressor followed on its heels, which I won’t go into but one that portends difficulties in the future. This last anxiety-provoking event used the previous stressors as a springboard and exploded into something even bigger. I was primed for anxiety and it took me for a ride until I found the traction to dig my heels in and slow down.

The worst part is, none of this stuff will simply go away.

Often, when people speak of anxiety-provoking events, they’re described as stressful things like a tense meeting with the boss or college finals or tight work deadlines. Admittedly these are all nerve-wracking, but they are also time-limited.

Then we have something like cancer.

I remember listening to a talk about anxiety where the lecturer tried to give the audience perspective about what was really going on, and he asked: what’s the worst thing that could happen? “You’re not going to die,” he assured us. And it’s true: let’s say that you fail all your final exams, but you’ll survive, even if you have to retake the classes.

Cancer survivors can attest to the fact that we suffer a different flavor of anxiety. There is no deadline on our stresses. They are thick and cling to us, like caramel sauce on the inside of a coffee cup, thinned by the passage of time, but leaving a film on our lives. Our hope is to get past the two-year mark, then five. Ten, if we’re so lucky.

Often, we hear about the success of treatments only to realize that the success is based on the majority of patients lasting until the end of the study, which might have been only five years.

Having someone tell you that you have a 95% chance of surviving five years is, well, underwhelming, especially for those of us who had premenopausal breast cancer. I mean, yeah, I HOPE I can last five years.

When you are here now, negativity fades to the background. Even if only for a little while.

So, what to do? If there were ever a time to practice non-attachment, this is it. For some of us (present company included), it is excruciatingly difficulty to release expectations–I want, even NEED, to be assured that everything will be okay and then rest easy with that.

But I promise you, clinging to the desire for things to be different only causes suffering. It also robs you of the joy of what you are experiencing right NOW–a beautiful sunrise, the softness of a pet’s fur, the richness of a cup of coffee, the coziness of a warm blanket. We are so wrapped up in fears of what the future holds that we miss the magic of what is before us.

Now is the only moment that exists, so truly, it’s the only moment that is real and certain.

Everything else is either history or what we concoct in our minds.

So this time of the year, I have to sit back and sense the Earth under my feet, feeling into how it supports me. This is what it feels like to be here now. No matter how many times I remind myself of this, I know I’ll have to do it again when the next stressor hits. That’s okay.

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This isn’t the first time I’ve written about anxiety and it certainly won’t be the last. But practicing mindfulness, every time I go through this experience, I reign in my emotions a little earlier and start feeling better a little faster. When I look back at what happened I realize I’m making progress, and that’s what really matters.

What I Learned By Hunting Virtual Ghosts

The drive to conquer my fears is why I insist on playing Phasmaphobia even when I dread the thought of it.

Phasmaphobia is marketed as a “horror” video game, the kind that I actively avoid. The concept is simple: you and up-to-three other networked players enter a haunted building, set up equipment and collect evidence of a ghostly presence. There are different tasks to complete but the ultimate goal is to gather enough data to be able to determine what type of ghost is haunting the premises.

Oh, yeah. And also to get out alive.

Because depending on how long everything takes you to do, sooner or later, the ghost is going to hunt you.

Sure, I’m fine as long as I’m sitting in the ghost-hunting van.

Now, there’s a lot more that I could say about this game, specifically about how it’s set up quite intelligently to be unnervingly terrifying. And there’s Articifial Intelligence involved, which means that the ghost can recognize some of the words that you say (hint: don’t cuss!) that will get it angry and on the hunt faster.

But this post is not a review of the game.

This is an observation that this silly game picked me up and threw me to the ground. It was a reflection of real life, because it perfectly reproduced ME, under acute stress.

By that I mean, tight chest, rapid breathing, elevated heartrate, shaking hands, the whole shebang. I get that gamers go through that, but for me, this meant more. These reactions were exactly the kinds of physiological responses to anxiety that have increasingly plagued me through the years.

People who can handle high levels of stress with cool distance have always impressed me. In fact, I’ve come to see that as a superpower. Being able to maintain mental space around you so that the walls don’t come closing in, squeezing breath out of your chest. That ability to think clearly when things are falling apart around you.

I have often thought, what would my experience be like if I could just dampen that physiological response. Well, Phasmaphobia has given me a chance to practice that.

I don’t do so well when I’m in a dark haunted house, getting threatening messages from the resident ghost.

I imagine myself going into that onscreen home, doing what I need to do, seeing the signal that the ghost is on the hunt (flashlight starts flashing and the front door closes and locks), and very calmly moving to a hiding place and waiting out the event. Declaring to the ghost, “You don’t scare me! I had cancer!” This is, after all, just a game. I’ve been through far worse things in my life.

But, no. Really, I’m kind of a mess. I can’t breathe, I can’t maneuver through a doorway, I drop things and do stupid stuff.

But I’m also stubborn. And playing this game with others like my husband who is unimpressed by the potential terror and shrugs off my disbelief that he’s not unnerved at all (note: he’s also played way more video games) makes me all the more determined to use Phasmaphobia as a “safe space” to practice my calming skills. I can remind myself that the fear is not real, that I’m only looking at a screen and that I walk away from the computer at any time. I don’t have to feel this way.

I am currently a work in progress. But I’ll get there. And once I do, my self-confidence will open the way to conquer other terrifying situations.

Once I stop being scared sh*tless.

I Am An Imperfect Meditator

I meditate. It is a daily habit that I engage in with the best intentions, but I am a victim of my wandering mind. Some days are better than others, most days I struggle with distractions.

Often, I can be halfway through a sit before I realize that I’ve been clenching my jaw or tensing my brow or gripping some other part of my body, thinking I’ve been relaxed but I’ve been kidding myself.

There are times that I’ve managed to stay with my breath, and then start getting excited that I’ve stayed with it that long, and then start imagining how I might look, staying with my breath…and of course, then I’m no longer meditating.

Yep. Welcome to the noise in my noggin’.

So it goes, day in, day out. Everyday, once or twice a day, or maybe even more. Some days feel like a complete waste, like I’ve got a freeway running through my head and have no idea what I’m doing.

But once in a while, I get a few moments of golden light. They may just flicker in and out, but when I look back at those moments I know everything flowed.

And those mindful sessions make all the other ones worth the effort. Every time I pause before reacting. Each time I recognize my body’s physiological response to a stressor. When I remember that I don’t have to respond with anxious energy. That I get to chose what happens inside my head. That I can just say, “Sh-h-h-h.”

That I can stand back and observe the storm without getting sucked into the whirlwind.

I meditate and often don’t do it well. But I still meditate. As of this posting, 1,380 days in a row, originating with the most frantic breaths shortly after my cancer diagnosis. Even through chemo, when I thought I wouldn’t make it through the night. Sloppy meditation sessions that seemed to be going nowhere.

Change doesn’t require force, it requires consistency.

Those imperfect meditation sessions have changed over time, imperceptable on a daily basis. Perhaps they have worn away a few rough edges the way constant drops of water oh-so-gradually wear away a stone. And just as an indentation forms where the drops hit, so meditation has molded a little basin for me, a bit of extra space in my mind that provides just that much more breathing room.

I am still at the very start of my mindfulness journey, so imperfect and stumbling. But even with the little that I have achieved, I am light-years ahead of who I was before I started, wide-eyed with fear and not knowing how to stop the rush of emotions.

It was terrifying then because I didn’t realize what was happening. Now I know, and that makes all the difference.

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.

Inviting Gratitude, Gently

Since this week is the Thanksgiving holiday in the US, it’s a good time to revisit the practice of gratitude. I wrote some time back about my nightly practice of writing down three things for which I was grateful. It was a lovely way to close the day on a positive note, as I would always be able to jot something down, even if my day was difficult.

Nightly gratitude journaling started feeling forced, certainly not the point of the practice.

However, after a number of weeks of this, I found it harder to be consistent. I would skip days, and often on the days that I could find something to write in my journal, the process would feel forced. The more I had to work to pull out little things to be grateful for, the less meaningful they became. Eventually, and regrettably, I stopped the nightly practice altogether.

Apparently, this is to be expected. Psychologist Sonja Lyubomirsky and colleagues from UC Riverside found that journaling once a week was more effective for boosting happiness than doing so more frequently. I can see why this would be. Everyone has stressful days that can wring any semblance of happiness out of us. Yes, while I found something to be grateful for any given day, if the overwhelming feeling was that of negativity then I was simply going through the motions of trying to find something–ANYthing–to write down. For me, this waters down the effectiveness of the exercise.

But writing on a weekly (or less) basis allows me to focus on the most powerful feelings of gratitude, and those have a stronger uplifting effect on me. They last longer and evoke a joy that daily journaling couldn’t.

In my life, there have been times that have felt very dark and heavy. In the moment, I have not always been able to find anything positive in them. Take, for example, cancer. Those weeks around my diagnosis were literally the most terrifying of my life, because I felt that this situation could actually cost me my life.

Quite frankly, if someone had told me then that I should stop and think of all the things I was grateful for, I might have told them to go to hell. The intensity of what was taking place right then–the shock and disbelief, the despair, the sheer fear–was too great to let in any light. For someone to have suggested that I should essentially “look on the bright side” would have felt like they were dismissing the reality of what is cancer.

For me, the process of letting gratitude come to me was far more effective than trying to snatch it out of darkness.

But as I passed through those worst weeks, I noticed things that bobbed up to the surface that I could be grateful for, so much so that at times I was overwhelmed with gratitude for how events had unfolded compared to how things could have been. I still had cancer and my life was still upended, but I felt a sense of grace about it all.

So if were to give one piece of humble advice to someone going through desperate times, it would be to remain open to the possibility that no matter how dark things may seem right now, when you finally have a chance to take a breath, you may see that glimmers of hopeful light have been shining through all along.

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.

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.

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!