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!

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.

Pre- and Postmenopausal Breast Cancer — Hey, Talk About the Difference, Would’ya?

This follows on the heels of my last post, which discussed a couple of things that doctors say to cancer patients that I wish could be handled differently. Today’s post is specific to breast cancer and deals with menopausal status.

Okay, okay, the last time I wrote about this I concluded that healthful living was important regardless of whether you were staring down breast cancer before or after menopause. But I need to back up a bit, because there’s more that needs to be said.

It is a fact that the risk factors we hear about the ones associated with postmenopausal breast cancer, as are the recommendations for decreasing your risks. It took literally months for me to fully comprehend this.

Wish I’d known that earlier! Following my diagnosis, I beat myself up trying to understand what I did “wrong”, when in fact, I was doing everything “right”. I hadn’t worried about breast cancer because according to the informational breast self-exam card hanging in my shower, my risk was super-low.

Well, yeah, it was. For postmenopausal breast cancer.

It was only later, talking to my clinical counselor, that she described younger women at informational sessions for new breast cancer patients, looking dazed and not understanding why they were there. Vegetarians, non-drinkers, non-smokers, active exercisers, lean and fit. Isn’t that the lifestyle that we’re supposed to live in order to reduce our cancer risk? You mean it might not work?

The reality is that all bets are off for premenopausal breast cancer. The average age at diagnosis is 63, which means that there are a lot more postmenopausal women with cancer who have been studied, and so there’s more that we know about them. And that’s why everyone talks about them. For them, higher bodyweight is positively correlated with development of cancer, but higher weight in premenopausal women has a mildly protective effect. What’s up with that?!

I was already a full year into this blog, which I started a year after finishing my chemo, and I was STILL ranting about those stupid risk factors that mean nothing. But the truth was that I hadn’t yet connected the dots about menopausal status and cancer risk. My medical team kept saying things like “you’re still young”, and I didn’t understand what they meant by that, until my clinical counselor mentioned that things didn’t go as anticipated for younger (read: premenopausal) women.

So my anxiety about what I did to bring cancer upon myself could have been brought down a few notches (and my early posts on this blog would have been less acrimonious) had I known that the preventative information is aimed at women in a different stage of life.

Instead, I was frantically asking, “What should I do now? What should I change?” and was perplexed by the response: “Just keep doing everything that you’re doing!” “But that’s what gave me cancer!” (Obviously, it wasn’t, but in my mind, there was some preventative measure I hadn’t taken that left a crack open for cancer to squirm through.)

So, okay, no one knows exactly what causes breast cancer in an individual, and this is not the post to attempt tackling that question. But truly, it would help if doctors would admit that the view is *even* fuzzier if you haven’t yet gone through menopause. Psychologically, I would have been able to cut myself some slack, and perhaps it would have, just a teensy bit, eased that frustrating sense of helplessness.

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This is probably a good place to remind everyone that, even with everything we know about cancer and how it develops, there’s still so much we don’t know. Genes, environment, the alignment of the planets…who knows where the blame really lies?

Hey Doctors! Before You Give a Cancer Diagnosis…

From time to time, I think back on my cancer experience (who am I kidding, I think about it every single day!) and wonder how things might have gone differently. Generally, I write for the cancer patient, but this post is directed at the doctor who delivers the diagnosis.

So…dear doctors:

Think very carefully about what else you want to tell a new cancer patient right after you tell them that they have cancer. It better not be important, because they’re not going to hear it. Once you deliver the diagnosis, a cancer patient’s executive level cognitive processes freeze, making comprehension difficult. Any further speech sounds like the “wah-wah-wah” talk of the adults in Charlie Brown cartoons.

For example, I was told two things by my radiologist, when he came into the room after he looked at my diagnostic ultrasound: (1) you have cancer, and (2) you’re going to be alright. Guess which one of those points I didn’t remember. I’m sure my doctor was trying to be cheery and supportive, but I can guarantee you it didn’t work.

Let’s face it, no matter how gently a doctor tries to break it to you, being told that you have cancer is devastating. It’s perfectly normal to be blown back by the news because your life is going to change drastically for at least a while, and maybe permanently. But, geez, doc, you should be prepared to repeat the same info at least several times and cut out the unnecessary bits. Your newly-designated cancer patient is going to have to need time to process the news!

Tip to the patient: bring someone with you to your subsequent visits who’s good at taking notes and is on an even keel. I brought my husband but he barely wrote anything down. Turns out, he was just as shocked as I was and wasn’t taking the news any better.

Hey, doc, I get that this is hard on you too. So please don’t think I don’t appreciate what you do (especially these days!). But please consider some of these things before you deliver your next cancer diagnosis. Thanks. 🙂

Following up on that, doc, the next thing that I would suggest is that you not give overly specific responses to questions based on assumptions you’re making. I asked about the recovery time from surgery, since I was terrified by the thought of going under the knife. Mine was early stage breast cancer, and ultimately I had a lumpectomy, but that same radiologist had warned me that recovery would take 4-6 weeks. Up to a month and a half?!? I whimpered something along the lines of, “But I have to work,” at which point he reminded me that my health was more important than my job.

I don’t know where he pulled out such a long recovery time, but being given that sort of time frame compounded my anxiety. Maybe he also said that some people have a shorter recovery time, but of course, I wasn’t processing info well and all I could remember was “4-6 weeks”.

So I would recommend to doctors, (1) if you really don’t know specifics, don’t offer estimates–I was back to work the week after my surgery, btw–and (2) please don’t blow off a patient’s concern about the importance of other aspects of their lives, like going to work. Yes, ultimately, as the saying goes, “if you don’t have your health, you don’t have anything.” But for many of us, if you don’t have a job, you don’t have health insurance! Everything in our lives is interconnected. It’s all important. Please keep that in mind.

Hey, nobody likes to deliver bad news and I know you’re trying your best. But the only thing worse than telling someone they have cancer is being the one it’s being told to. So please, be gentle. You will go home that evening possibly bummed that another one of your patients has cancer.

The patient is going home that evening embarking on one of the most frightening journeys of their life.

Making Space for Cancer Emotions

While I myself am celebrating three years since the summer of my chemo for breast cancer, I was shocked to hear of actor Kelly Preston’s death from the disease. It’s a reminder that in an egalitarian way, cancer doesn’t care how famous you are.

I’ve been reading about those who are dealing with late-stage cancer. Most notable for me is actor Shannen Doherty, whom those of my generation remember from “Beverly Hills 90210” (although, admittedly, I didn’t watch the series).

Shannen, along with well-known names like Alex Trebek, Olivia Newton-John, Congressman John Lewis and others have been interviewed by the press. We hear about daunting odds and their strength of character. Anyone battling the late-stages of cancer shows a lot of bravery.

They speak of gratitude, perseverance, patience, a forward-thinking mentality. But as anyone with cancer can tell you, they would rather not be fighting this fight. Yes, there are “bright moments” (and I use that term loosely) that come with learning you have a “serious” cancer diagnosis, but that’s because you find those breaks in the darkness.

Cancer brings powerful emotions, often negative ones. And that’s perfectly okay.

However, I think it’s critical that cancer patients be given the uninterrupted space to talk about the fear and anxiety associated with this situation. It’s not all happy trips to the infusion room as everyone cheers you on. Shannen is quoted as saying, “The unknown is always the scariest part…Is the chemo going to work? Is the radiation going to work? You know, am I going to have to go through this again, or am I going to get secondary cancer? Everything else is manageable. Pain is manageable, you know living without a breast is manageable, it’s the worry of your future and how your future is going to affect the people that you love.”

This is something that must be addressed. When others call you a warrior, they need to understand that you’ve not been given a choice in the matter. And you yourself have a right to feel all the emotions that you feel, whether it’s anger, fear, helplessness or numbness. That must be allowed because it’s real.

Most importantly, no one should tell a patient that they need to only think positive. That is telling them that they shouldn’t feel what they feel. And that’s never a good thing.

So just as Shannen has done and others continue to do, we must accept the weight of the emotions felt by cancer patients, not diminish it. We should hold space for them to express everything they’re feeling. And then actively offer all the support and love that they need.

Revisiting Yoga After Cancer: Finally Coming Around

Decades ago, my introduction to yoga took place in my parents’ library, a small paneled room with wall-to-wall, floor-to-ceiling books. There I found an illustrated guide, replete with black and white photographs of odd contortions and strange nasal flossing. It seemed weird.

Oh, the moves I could do!

I had barely begun elementary school, and at that age was a natural-born yogi, as many young children are. Lotus pose? I could get my legs into position without using my hands. King Pigeon was no big deal, and nothing hurt when I folded myself up. I didn’t have a regular yoga practice at that age, but I would get occasional exposure to yoga moves at school, and I imagined all yogis wore diaper-like pants and lived on mountaintops.

High school provided an opportunity to do more. One of our French teachers practiced yoga, and I took a season of classes with her. Really, I remember little from that time. At that point, I was still limber but not as lanky, and yoga wasn’t particularly exciting. Volleyball was my game and I had no appreciation for how yoga could improve my playing. Had I practiced it properly, yoga could have helped immeasurably and prevented many a lost serve. But I lacked introspection and so barreled on as before.

Yoga resurfaced in my life now and again, but obsessed with more active ways of sweating, I steered away from it. I swam, ran and eventually strength-trained my body into shape. Yoga didn’t have a place in my view of what fitness should be.

Holding poses for a prolonged time? Not for me. Sweating through hot yoga? You’ve got to be kidding. A friend sustained a serious back injury from a yoga teacher who tried to force her into a pose. That was it; I was done with the idea of incorporating yoga into my already packed fitness routine.

Then I got cancer.

And I realized that my mind was victim to free-ranging anxiety. Desperate, I immersed myself in learning to meditate. I know they say that you need to find calm in the midst of chaos, but being thrown into chaos is not the best place to learn to be calm. I limped through cancer treatment and clung to the hope of peace. The only relief came from my love of fitness and drive to exercise as soon as the worst side effects of each infusion had passed.

Still, I pushed yoga away. Not interested. I needed to get my body back to where I’d been pre-cancer, not do slow movements that might tweak something and burned too few calories.

But the more meditation I did, the more mindfully I moved, yoga kept coming up, like a refrain in a song. Movements paired with breath.

I have made space in my life for yoga.

And then, it hit me. Movements paired with breath. I was all about the breath by then. Yoga provided the movements. And I found bliss.

When I opened myself up to yoga and invited it into my workout routine, something magical happened: my body started stretching out. All that tension that I’d carried for decades that had gradually tightened me up started releasing. My fingers found the floor in a forward bend again, and gently brought my palms with them. My heels easily pressed against the ground in a downward dog, with little peddling required. Moves that I could once do became available to me again.

So here’s the thing about breast cancer: after surgery, you lose some mobility in the affected side. Even now, side bends stretching my left side “pull” uncomfortably compared to my right side. Anyone who’s had lymph nodes plucked out of their armpits knows that that area stays tender for a good long time. Often, this brings an imbalance to the body.

My workouts had consisted of pounding myself through rowing, conditioning intervals, strength training with heavy weights and swinging kettlebells around. But without yoga, something critical was missing. Initially, I was afraid that “sacrificing” exercise sessions to yoga would result in faster decline of my physical ability and a push towards a more sedentary existence. Oh, how wrong I was! If anything, yoga has moved me towards vitality, flexibility and a sense of youthfulness that straight strength training had never allowed. Yoga opened up my whole body and allowed it to breathe freely.

What this has offered me is another way to look at how my cancer journey is progressing. After the aches and pains associated with never-ending adjuvant therapies, I admit I felt it was all going to be downhill, and that all I could do was desperately cling to my workout routines as my abilities gradually slipped away. Yoga brought back an element of fitness that I’d forgotten, and now, even though I know that I will be lifting less and rowing slower as time goes on, there is a new, perhaps more gentle world of fitness that I have yet to fully discover.

(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.

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.

So Far, So Good

I had a mammogram last Thursday to ascertain whether or not I was still in remission from breast cancer.

For the record, I still am, although it’s easy to say that like it’s no big deal. Not only is it a huge deal, but getting through last week was more difficult that I anticipated.

One of the basic tenets of mindfulness that I practice, with varying degrees of success, is non-attachment. This is particularly useful when dealing with cancer because the disease involves so many scary things, and as a result, so much wishing that things were different. Of course, the more you agonize over the fact that you’re going through something you desperately don’t want to be going through, the more suffering you experience.

I can personally attest to this.

It would be great if letting go of expectations would be as simple as releasing a paper lantern, but it’s not that easy.

To counter this, I do my best to release expectations of specific outcomes. When it come to scans, every cancer patient wants to hear that tumors are shrinking and every cancer survivor wants to be told that the tumor hasn’t returned. It’s REALLY, REALLY, REALLY hard not to cling to those wants, but the harder you cling, the more painful the separation if things don’t turn out the way you hope, and even if they ultimately do, there’s fear that they might not.

So for the past several weeks, I’ve been practicing letting go. It’s funny that “letting go” is so easy to type out, but so incredibly difficult to accomplish. I’m not good at it when it comes to the things I desperately fear.

To counter my clinginess, I’ve adopted a concept I call, “so far, so good”. That means that up to this point, I’ve been able to handle everything that’s happened to me. This doesn’t mean that it’s been easy or pleasant — in fact, at times it’s been horrible — but somehow I’ve made it through to this point. And tomorrow? I cannot predict what will happen then, but right now I’m still here.

This way, I can feel positive without the burden of hopeful expectations — and the fearful possibility that those expectations will be dashed to smithereens. Of course, all of this sounds great because I’m speaking theoretically. But as we know, that ain’t real life, as I’ll illustrate in my next post…

Who Knew a Grapefruit Could Create So Much Confusion?

A few days ago, I decided to eat a grapefruit. We had gone to a Korean market earlier that day, and the citrus fruits beckoned to me with an enticing fragrance. I couldn’t resist.

So as I was finishing up one of the most delicious grapefruits that I’d had in a long time, I started thinking. Back when I was taking tamoxifen, I’d come across an admonishment not to eat grapefruit because it could interfere with absorption of the medication. But I wasn’t taking tamoxifen anymore, I was taking letrozole. Could the same be true?

I started googling, first on my phone. And as the search results came in, I had to switch to my computer because things were looking confusing. Many sites said “NO” in no uncertain terms. Grapefruit can prevent the letrozole from breaking down in the body completely, leading to higher levels remaining than could be safe.

It wasn’t that the grapefruit was hindering the efficacy of the letrozole, it was that grapefruit could set up a dangerous situation of “overdose”.

Of course, googling often results in messages that are big on warnings and short on details. So I dug further and happened upon forum posts where other women were asking the same questions.

I read the following exchange: one woman said she’d spoken to two different hospital pharmacists, both of whom had given her the okay to eat grapefruit. A number of other women (like, everyone else) chimed in on how they had unequivocably been warned to stay away from grapefruit (for the above mentioned reasons). The first woman reiterated that she had been told by HOSPITAL PHARMACISTS that she could each grapefruit with impunity…and so it went.

Do I LOOK like I know what I’m doing?

What really bothers me about this is that so many websites suggest that, it really it best to avoid grapefruit due to possible interactions with letrozole. But I slogged through the entire bloody informational insert from the manufacturer of my drug and NOWHERE did it mention that I shouldn’t eat grapefruit. There was also nothing on the bottle itself, nor did my oncologist say anything about that.

However, WebMD’s grapefruit interactions webpage, while not mentioning letrozole by name, did suggest issues with estrogen and also Cytochrome P450 substrates (of which letrozole is one, but I just happen to know that; others wouldn’t necessarily). WebMD’s letrozole info pages made no mention an issue with grapefruit. I mention WebMD mainly because many people consider it a reputable site and may go there for information.

If it truly is that dangerous to eat grapefruit while taking letrozole, why is that not explicitly stated on the container? Why would any woman think to google a random fruit or vegetable, like, “I think I’ll eat an artichoke and shiitake mushrooms today, but first I’ll do an internet search to make sure they don’t affect my medication.” Who plans their meals like that?

The bottom line is, the effect the grapefruit has depends on a variety of factors. It depends on when you’re eating and how much you’re eating, and how many days in a row. But all of that is so unsatisfying to me, who wants a concrete answer. Cancer is not about answers, however, it’s about getting comfortable with living with the unknown.

So, back to the grapefruit. Spooked, I skipped the medication that evening, although I’m sure I could have taken it and still lived through the night. I’ll ask my oncologist about it during my next visit, but I expect that his answer will be, “just don’t overdo it.”

And there’s another fragrant grapefruit sitting on the counter, which I will eat at sometime in the future, maybe half at a time. Here’s to living with uncertainty!