Month: September 2020

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.

~~~~~~~~~~~~~

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.