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!

A Month of Fear-Driven Memories

Here we go again…

Around this time of the year, I get uneasy. It’s February, which means it’s time for my mammogram and the determination of whether I’m still in remission from breast cancer. It’s also the month when, in 2017, my life was slammed in a different direction and the best I could do was try to hang on.

February 8, 2017: Doctor’s appointment. After feeling a lump in my breast for six months (SIX MONTHS!!!), I finally met with my general practitioner to have her tell me it was nothing. Except that’s not what she said. Instead, she gave me a referral for a diagnostic mammogram and warned me not to put it off.

My own mammogram is on February 27, 2020. I don’t think I’m going to get bad news, but I just want it over.

February 23, 2017: My mammogram and diagnostic ultrasound. I had not expected that waiting two weeks for a screening would be so horrible, but my anxiety worsened with every day. I also had not expected the radiologist to come in and tell me that I had cancer. Technically, he wasn’t supposed to do that without biopsy results, but he knew what he was looking at. One in eight women is diagnosed with breast cancer at some point in her life, so he’d seen his share. Things spiraled downhill after that.

February 28, 2017: Biopsy. This procedure was anticlimactic in the sense that I knew I had cancer (see above). What I didn’t yet know was how aggressive it was. The procedure itself wasn’t bad but the mammography technicians were unable to get a clear picture of the titanium markers that the radiologist who biopsied me had inserted as surgical guides, so they took over eleven mammogram images on that left breast. The physical squeezing was miserable, but I was being squeezed mentally too. I think they eventually got the image they wanted…or maybe they didn’t. It was all a blur. I didn’t want to remember.

But now it’s three years later and I remember everything too clearly. Every February, I lose my footing on the Earth and hover for a few weeks in limbo, starting from when I make my mammogram appointment.

I’ll have an uneasy feeling until I get the “all clear” from the radiologist, or “I’m so sorry, but…”. On one end of the continuum, there’s glorious relief, on the other, mind-numbing anxiety, and I’m standing here in the middle. Most of my life now is lived in this middle ground and it’s a struggle to release expectations and attachments to how I want things to be. I’m not great at it, but I have the rest of my life to learn to deal. I hope that’s enough time.

Hi-Ho, Hi-Ho, On Letrozole We Go

Starting up again…

After giving me a six-week respite from tamoxifen and then running bloodwork that revealed I was postmenopausal, my oncologist made good on his threat to put me on letrozole, an aromatase inhibitor. This breast cancer medication is supposed to block “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” (breastcancer.org). It’s also better suited for postmenopausal women.

Perhaps it’s more correct to say that the journey is BACK on. I enjoyed my time off tamoxifen, but I really didn’t notice much of a difference in myself whether I was taking it or not, suggesting that maybe what I thought were side effects, weren’t. So I’m willing to humor my oncologist and try an aromatase inhibitor.

Not gonna lie, I really did not want to go on yet another medication, but for this appointment, I left all the journal articles at home and put away the boxing gloves. I promised my oncologist that I would stay off the forums, stay off PubMed, quit overthinking things and give letrozole a chance.

The reason? My oncologist thinks that my earlier frustration with tamoxifen was, to put it bluntly, in my head. And my clinical counselor suggested that what I complained of could be explained by anxiety. But I swore that my memory and focus issues started with tamoxifen.

You know what? I’m not so sure now.

The fact is, everything that I was experiencing could have been caused by anxiety (or menopause). And even more striking were the things that I didn’t experience. Not only did I not have significant hot flashes (maybe a “warm flush” here or there, easily countered by taking off a sweater), I never had night sweats. Heck, I had more night sweats before my cancer.

No weight gain, either, which had been another big concern of mine. I’ve been disciplined in maintaining healthy fitness habits throughout my adult life, probably to the point that most people wouldn’t tolerate. Tamoxifen didn’t manage to mess with that, which was extremely gratifying.

While I really want to peg the concentration problems, distractability, flagging libido and other negatives on estrogen-blockers, a retrospective look at my emotional history suggests that (1) I’m highly suggestible (I need to stay off the internet!), (2) there have been loads of anxiety-amplifying events in my life, even before cancer, that I haven’t handled well, and (3) I would be better off shutting up, taking the pill and working on getting my mental state in order.

I mean, I already knew most of this. But some things need to hit me between the eyes a number of times before they actually register.

Wow, dizziness and impaired ability to drive are bad enough to merit a prominent place on the label? Yay! I’m going to pretend that this is a sleep inducer that will leave me better rested. I’ll let you know if that works.

So, while my oncologist warned me about “a little joint pain” (eek!), I’ve avoided anything but a cursory glance at what I might experience on letrozole, besides what reactions would necessitate calling the doctors.

We’ll see how bad these side effects really are.

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A FINAL NOTE – According to what was written on the bottle, this stuff can cause dizziness and impair my ability to operate a vehicle. Seriously? I didn’t expect that, but here’s what I’m going to do with that tidbit of information: I’m going to view letrozole as a reason to get to bed earlier, since I’ll obviously have to take it in the evening. And I’m going to tell myself that this is going to help me sleep. Who knows, maybe it will?

What No One Told Me About Cancer and Hair Regrowth

More than two years after finishing chemo, after being afraid my hair would not grow back, and after being delighted with the way it did…I’m experiencing follicular drama, once again.

Once chemo was over, my sleepy follicles took their time getting roused into action. To say that I worried would be an understatement. I was still caught up in the unfairness of being smacked down by breast cancer. Confronting the possibility that after enduring the nastiness of cancer treatment, I might not get my hair back? That was too much.

Well, if you’ve read my posts on hair, you’ll know that my hair finally did come back. And there was much rejoicing.

And that’s where my hair posts stopped. But as happens with these kinds of things, that wasn’t the end of the story.

While still bald, I had been fed reassuring anecdotes by well-meaning supporters about hair coming back even better than before, lush locks that served as well-deserved rewards for undergoing the anxiety and strain of cancer diagnosis and treatment.

But as much as cancer patients feel like they don’t know what’s going on, those around them have even less of an idea. They want you to “stay positive” at all costs, so they overload you with lots of good news.

The forest isn’t as dense as it used to be.

By now you can probably guess where I’m going with this. Because in Spring 2019, things started changing. Within a few months, my uber-cool spikey rockstar hair lost fullness as my strands thinned. Then, I saw “bald spots”.

So, let me explain how I define “bald spots”: these areas have hair, but due to the color (um, WHITE) and thinness, the hair seems translucent, even transparent. And along the part? You can’t see the roots well at all.

My reward for enduring cancer is invisible hair.

My hairstylist confirmed that the hair that comes back in after chemo is different from the hair that eventually settles in. And mine had settled.

Tamoxifen also played a role, since choking off estradiol and moving into menopause will age both you and your hair, particularly if you are premenopausal going into treatment, as I was. So this should have been expected, but in the hustle and bustle of all the other little things, like, oh, wondering if you’re going to survive the ordeal, no one really talks about the fact that there will be other changes that take place.

And now, I’ve been off tamoxifen for almost six weeks, but can’t tell whether there’s been any regrowth, not that I expect any. I meet with my oncologist this Tuesday and you can bet your panties he’s going to prescribe an aromatase inhibitor for me, so the pharmaceutical depression of estrogen will continue.

I am dealing. Mostly. Am I happy about this? Of course not. The last few years have felt like running a gauntlet of misery, but one where I’m only hobbled and not completely taken out. Given that, I’m ashamed of complaining, as there are many others doing so much worse. But not ashamed enough to stop writing about it, as this is my reality and it affects me. If I’m going through this, there’s a good chance that many others are too.

I’m supposed to be moving on and leaving cancer behind me, right? But like an annoyingly nosy neighbor, it keeps waving at me through my kitchen window, reminding me that it’s living next door.

“Don’t Drink the Water and Don’t Breathe the Air”: A List of Breast Cancer Risk Factors

After some intense research on the risk of developing breast cancer, I’ve come to the conclusion that the factor with the greatest causal relationship to the disease is, quite frankly, life. In fact, I sometimes wonder how people manage to NOT get cancer.

For your reading pleasure, I surveyed a number of reputable sites to compile a list of commonly accepted breast cancer risk factors (links to the info): American Cancer Society, Mayo Clinic, Memorial Sloan Kettering Cancer Center, Dana Farber Cancer Institute, Centers for Disease Control, National Breast Cancer Foundation, World Cancer Research Fund and WebMD. There are some emerging risks that most sites didn’t list and although I have seen the research studies in support of those factors, I opted to exclude specifics for now. Perhaps that’s for a future post.

Here you go, not in exact order of importance:

  1. Being born female (well that covers about 50% of us)
  2. Getting older (um, inevitable…)
  3. Drinking alcohol (even moderate drinking has been shown to be harmful – find a different hobby)
  4. BRCA1 and BRCA2 gene mutations, which everyone talks about, but certain mutations in the following may also increase cancer risk, although to a lesser extent: ATM, TP53, CHEK2, PTEN, CDH1, STK11, PALB2
  5. Personal history of breast cancer (get it once and you’re a moving target)
  6. Family history of breast cancer (including both close and distant relatives)
  7. Personal history of breast lesions (even stuff that seemed benign-ish)
  8. Radiation exposure, specifically to the face and chest, before the age of 30
  9. Obesity (but mainly for postmenopausal women, see here; it’s complicated)
  10. Having dense breasts (sometimes this is considered a top risk factor)
  11. Beginning your period before age 12
  12. Going through menopause after age 55
  13. Having your first child after age 30
  14. Never having kids (remember that when you’re paying for their college)
  15. Taking hormone replacement therapy (HRT)
  16. Certain hormonal birth control methods
  17. Family history of ovarian cancer, especially before age 50.
  18. Being white (at least in the U.S., although the rates of African-American women are catching up, often with a worse prognosis)
  19. Having received diethylstilbestrol (DES) to prevent miscarriage, given either to you or your mother
  20. Being inactive (honestly, exercise is critical – don’t overthink it – MOVE!)
  21. Not breastfeeding (not only does nursing lower your risk, if you do get breast cancer, you’re less likely to get the aggressive triple-negative type)
  22. Being taller (this may have to do with faster growth at an early age)
  23. Doing night shift work (this may affect your hormone patterns, not to mention make you cranky during the day)
  24. Smoking (the evidence for this has been deemed “suggestive, but not sufficient”, but inhaling smoke sounds like a bad idea regardless)
  25. Exposure to cancer-causing chemicals (that’s, like, just about everything out there, and the connection remains unclear)
  26. Diet choices (this is unclear, although there have been some links drawn to both macronutrient proportions and some vitamins, but more research must be done)
Oh, for the day when we can be guaranteed that what we’re doing is helping (or hurting) us!

In a word, we really don’t know, but living a healthy lifestyle gives you the best chance for survival.

Finally, the things that seem to have no reasonable link (per WebMD and echoed on other sites):

  1. Antiperspirant (no need to stink)
  2. Bras, underwire and regular (feel free to support yourself)
  3. Abortion or miscarriage
  4. Fibrocystic breast changes
  5. Multiple pregnancies
  6. Coffee/caffeine (raise your mug in celebration!)
  7. Hair dye (unless it’s really radioactive, but come on, that would be silly)

Judging from the above info, it can feel like cancer is waiting around the corner to pounce on the next unsuspecting victim that wanders by. I thought I had ZERO risk factors, but I can easily pick out several there. At the same time, I know people who seem like they’d have a gazillion risk factors and they never get zapped. So.not.fair. But that’s cancer for you.

And the more we find out about the disease, the more we see how complex it is. We are all different, reflected by our DNA, so it’s not out of the question that we might be affected in unique ways by these risk factors. Research is uncovering new connections all the time, and it may be that in order to find a cure for cancer, we’re going to have to look at the disease in ways that we never have.