Survivor – Frantic Shanti

Swinging My Hips

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It’s been over nine years since my cancer diagnosis and treatment. That’s almost a decade, which is hard to believe! But here I am.

While the physical side effects of the cancer treatment itself are mainly gone, I am still dealing with some weird psychological ones. One of the most unexpected effects for me was that I lost a chunk of my self-identity.

I’ve written in the past about difficulty of dealing with this change in my sense of self. Part of it was hormonal, brought on by endocrine therapy. I had been pre-/peri-menopausal when I started treatment so I wasn’t ready for menopause. There was so much anxiety associated with surviving cancer, chemo and radiation, the thought of also dealing with one of the biggest changes in a woman’s life hadn’t even occurred to me. I had not seen that far into the future because I was afraid that I’d never get there.

Ah, the joys of letting your body guide how you move through the world.
(Photo by Liberty Ann on Unsplash)

All of this is a long-winded way of getting to the actual point of this post…

So in the aftermath of cancer and this semi-identity crisis, while in yoga teacher training, someone made a comment that stuck with me.

I had bumped into one of the other teacher trainees outside a shopping mall, who said she recognized me from far away. She explained, “I could tell it was you from your walk.”

I didn’t ask for elaboration, but it seemed like an odd comment and made me wonder, what exactly did she see in my walk that made it look so distinct? Some time later, someone else said the same thing! So I started to pay attention.

I realized I wasn’t walking the way I used to.

My walk had become a very quick-paced, tight-strided gait. When I considered myself from the side, my movement looked uncomfortable and self-conscious, as if I were trying to be invisible and not take up space, no mean feat for a nearly six-foot-tall woman.

My flowing saunter had been replaced with something that I can only describe as “getting from point A to point B with my tail tucked between my legs.”

I didn’t feel like a woman. I felt like a survivor, which in itself is not a bad thing. But I defined myself as one, and it had become an all-encompassing definition. Yes, I had survived, but now what?

Moving smoothly, gracefully…
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It wasn’t until I found myself in a completely new environment with calmer surroundings that whatever I was clenching started to unclench and I found myself breathing with more ease. And that’s when I remembered the comments about my walk.

So I reintroduced a playful, natural swing in my hips. Releasing the tension that had built up. Back before I had kids I’d taken several years of belly dancing classes, and I drew on the sensual feelings from that dance form.

I started to roll. It was a fluid motion that felt so right in my body. After years of squats, deadlifts, rows and presses, it was nice to let go of the tightness and return to something that was decidedly more feminine.

This brought with it a mindfulness of where I am in space, and how I move through it. The simple act of allowing my hips to move in their natural arc has reopened a door that I thought was closed forever.

It’s nice to be back.

Year 8 Mammogram: Can’t Shake This Feeling

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A couple of weeks ago, I had my 8-year 3-D mammogram. To be clear, this is eight years following the original diagnostic 2-D mammogram and ultrasound that identified my breast cancer tumor.

This far down the road, the situation seems much less dire. The mammogram takes place shortly after one of my visits to the oncologist, who does a manual breast exam. So if anything should show up on the 3-D mammogram, it would still be quite early stage.

And at this point in my life, my greatest fear is not something showing up on a mammogram, it’s something showing up on another scan elsewhere in my body, because that would mean metastasis.

I’m busy, busy, busy. Too busy to worry, right? RIGHT?
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But that was not the case this year. I was preoccupied with other concerns including a car purchase, the upcoming practicum for my yoga4cancer training and an NIH grant renewal for the lab I work in. The main thing that I was thinking of regarding the mammogram was how badly my ribs might hurt as I was pulled closer into the scanner and smushed up against the machine.

And also, how sleep deprived my husband and I would be since we had an early morning appointment. Following which I needed to get to the office, while catching a webinar on the way. Lots of stuff to juggle.

So that’s the mindset with which I arrived at the imaging center. And that’s what was going through my head as I made small-talk with the friendly technician and went through the scanning process.

But then she left the room to bring the scans to the attending radiologist’s attention. Note: at our imagining center, if you are a cancer survivor, the radiologist reads your scans while you’re in the imaging room so that you don’t have to wait for results via phone call, through an online notification or—even worse—via the mail. You get them then and there.

Before the tech left she offered me use of the bathroom. I didn’t need it, but I realized that while waiting for the results I needed to keep my mind busy. Off to the bathroom I went, feeling into my feet as I walked like a good little mindful girl.

My big burning ball of cancer experience has quite a long memory tail!
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So again, it’s been eight years. I’ve had quite a few mammograms and other scans in that time. I’ve gotten a lot better about dealing with them and I certainly don’t experience severe “scanxiety” with mammograms.

But when I was done with the bathroom and sat back down in the imagining room with the monolithic mammography machine quietly staring back at me, I wanted to be done with it. I wanted to be dressing and leaving and on my way to the next thing.

Again, it’s been eight years, but I had to grab my phone and distract myself with work emails so that I wouldn’t think about anything else.

EIGHT YEARS, people! Cancer is like a fiery comet with a long tail that is visible for years after the thing itself passes.

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Oh! I got a clean bill of health. Good to go for another year!

The Dangers of Elle Macpherson’s Cancer Treatment Choices

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Supermodel Elle Macpherson recently made the news with an interview with the Australian Women’s Weekly magazine when she revealed her breast cancer diagnosis.

She was diagnosed in 2017 (as I was!), so the fact that she’s here and talking about it suggests that her treatment worked.

But what was her treatment? According to the article, following diagnosis Elle consulted with 32 doctors (and experts, although it’s unclear in what) and ultimately decided to follow a holistic treatment path. In her own words, “an intuitive, heart-led, holistic approach”.

She decided to forego a mastectomy in favor of a lumpectomy (as I also did) but also dispensed with the conventional chemotherapy, radiation and hormone therapy (I went the conventional route).

So let me clarify some things here: Elle had the lump removed. If the cancer had not spread (which presumably it hadn’t) AND no rogue cancer cells had gotten out AND the surgeon confirmed “clear margins” upon excision of the tumor, it’s certainly possible that all evidence of the cancer was removed from Elle’s body with that surgery.

As we survivors know, everyone’s cancer is different. That’s why we discourage comparing tumors or offering advice. What works for one person may not for another because so much depends on the state of the individual…and probably on a lot of other factors that we are not even aware of, even with present day advances in cancer treatment.

Elle has even stated that her treatment is not for everyone. Who knows, she might have said this for legal reasons…because you can see what’s going to happen. While Elle, as a former supermodel, businesswoman, etc., might have access to whatever specialists and level of care she desires, most of us will not.

Do you feel lucky? Rejecting conventional cancer treatments in favor of clinically unproven ones can be a big gamble.
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Elle asserted: “I want to help and encourage others to follow their heart and give things a go.” Sadly, when it comes to something as slippery as cancer, following our hearts is not always the best choice of action, no matter how much we want it to be.

My concern is that a newly-diagnosed breast cancer patient, fearful of the admittedly-harsh treatments that modern medicine offers, might decide to take Elle’s path (“she did it so I can too!”). But unless this person is independently wealthy or otherwise connected, they will have to cobble together a questionable plan with minimal support, and possibly fall prey to unscrupulous players looking to make a buck out of someone’s desperation.

And in these days of growing suspicion of science and the advice of doctors—brought on by pandemic-related missteps or perceived draconian measures—the chance of patients rejecting well-worn treatments is even more likely. Statistically, this would result in more lives lost to the disease.

When I made my own treatment choices, I didn’t go with the harshest stuff that my oncologist offered, opting for very effective (and, yes, cardiotoxic) Herceptin immunotherapy instead of lobbying my insurance to cover the even-more-effective (but even more toxic) Perjeta for my HER2+ cancer. I also had to cut my hormone therapy short by a number of years due to how it affected my ability to exercise, which has also been shown to have a strong effect on preventing cancer recurrence. These were measured choices, as it’s clear that Elle’s were.

At the same time, in the back of my mind I know I can’t say I did everything I could to blast my cancer into submission. But I do feel that taking everything into consideration, I did enough. My oncologist agrees.

As far as Elle’s treatment is concerned…I also did a number of things that she did, including meditation, exercise, therapy (our cancer center was very supportive of complementary therapies) and more. I cannot say how much conventional treatments vs. complementary ones contributed to my remission, but I assume each played a role. And the combination gave me peace of mind, which I would not have had, had I chosen only alternative therapies.

Ultimately, I hope we get to the point where we can eliminate the most toxic treatments and heal ourselves more gently. Ideally, we’d even prevent cancer. Huge strides have been made in cancer treatment, but we are not there yet. Every time we decline a proven treatment, we roll the dice. I’m hoping that Elle’s story does not unnecessarily put people with fewer resources at risk.

Patient vs. Survivor: The Impact of a Label

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The first devastating realization I had following my breast cancer diagnosis was that I was now a cancer patient. In my mind I immediately went from “happy-go-lucky, fitter-than-average” to “sick beyond belief”.

Except that nothing physical had changed. But my mindset had. And when I found out that my triple-positive tumor was going to require chemo, I knew that everyone else was going to be aware of my hairless, frail status.

Cancer. Patient. I imagined myself pathetic and scrawny, walking around hunched over in a hospital gown with light shining off my bald scalp. Sounds dramatic, huh?

How do your labels affect you?
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Recently, however, I learned that there’s been a change in the language surrounding those individuals who have been diagnosed, are undergoing treatment for or have finished cancer treatment. The word “patient” as it relates to someone’s status has been supplanted by “survivor” much earlier in their cancer experience.

This is curious to me because I went through a mini identity crisis after I was done with chemo and radiation–I thought that only then could I start calling myself a (hopeful) cancer survivor. But I was a bit anxious about doing so, because I didn’t know whether I truly deserved that title. I thought that I needed to have some special designation before I qualified as a survivor.

These days, the survivor label is given when you receive a diagnosis. The idea is that while initially we didn’t know your status, now that we’ve confirmed your tumor, you are going through the experience of surviving the disease. As stated on the Cancer.net site, “When people talk about ‘survivorship,’ they are usually referring to navigating their life experiences and challenges resulting from their cancer diagnosis.” Read more about how ‘survivor’ is used here.

This sounds a lot better to me than using the term “patient”. By referring to myself as a patient when I didn’t have any reason to–meaning no physical symptoms–I was imagining myself sicker than I really was, which increased my anxiety levels. That made my entire experience worse and it didn’t have to. I did that to myself (‘cept that I was only using the common labels of the time).

How are you choosing to define yourself?
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Instead of putting my energies into dealing with the side effects of treatment, I went down a dark hole.

Language matters! While there’s no doubt that cancer brings on stress and anxiety, terminology can make a difference in your cancer experience and that can either help or hinder you in the process.

So I urge you to consider the words you use to refer to yourself and pay extra attention to how that feels to you. You could be making yourself miserable without even realizing that you have some control over this.

“Left Behind”: An Unanticipated Side Effect of Cancer

(Title image: Photo by Denys Argyriou on Unsplash)

Apologies because this might sound like a rant but this topic has been on my mind a lot lately.

When you’re diagnosed with cancer, you learn about the many side effects of treatments.

You will be informed about the physical and even psychological effects that cancer patients deal with, but there are also considerable financial repercussions. Patients may struggle with hospital bills: some lose their insurance coverage, others might never have had any to begin with, those who have coverage may find that it’s insufficient. It’s not uncommon to hear how cancer has driven survivors and their families into bankruptcy.

On top of that, cancer can do a number on your career aspirations for years to come.

Money issues are one of the side effects of cancer that don’t get a lot of airtime…but really should.
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In case you think that it’s uncool to complain about one’s career in the face of having survived cancer, let me get this out of the way: being a cancer survivor is a privilege. I’ve written before about how acutely aware I am that I have lasted longer than many cancer patients.

But as the effectiveness of cancer treatments improves, the number of cancer survivors increases and long-term repercussions become a more and more serious consideration, particularly how they affect ongoing quality of life.

For people who are still working out their careers, cancer can derail progress because it plants a huge stop sign in their path.

Think of going into the chemo infusion room: the days leading up to it entail appointments, port placement, purchasing supplies (anti-emetics, anyone?) and in general prepping for being out of commission about a week.

It’s not the time to focus on stressful work deadlines (and most sincere condolences to any patient who has to do that!).

Ironically, as much as I feared infusions, they actually gave me an excuse to focus on myself instead of worrying about everyone else. I posted about that here somewhat sadly that chemo allowed me to rest without feeling guilty.

It was at that point that I’d realized I’d been pushing myself, always expecting more and not feeling like I was measuring up. Chemo gave me a break from that. Which was good…kind of…

But after chemo and radiation came endocrine therapy, so just as I was winding down from one set of side effects, up popped another.

Right? RIGHT?
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And all those plans I’d had for myself were put off again and again. Career goals seemed more out of reach because my timeline had shifted.

Well, I’m not stupid, so I changed my career goals. Makes sense, right? Cancer provided a different perspective on things and motivated me in another direction.

But in the wake of cancer treatment, I feel like I’m walking in cement shoes…if it’s not one thing it’s another. I got off aromatase inhibitors (early) and then realized that I was having memory and focus issues. Whether Cancer Related Cognitive Impairment (CRCI) or menopause-driven brain fog, all of a sudden I’m dealing with something else.

It feels as though the train to prosperity has left the station and I was just a little too late to catch it.

Great.

Right now I’m looking at sky-rocketing costs-of-living in a part of the country that literally got expensive around me. Instead of moving up in the world, my family and I are desperately searching for less pricey housing which will put us in worse conditions and a longer commute to work.

And at age 57, when most of my friends are looking at enjoying retirement in the years to come, planning for what they’ll do in their golden years, I’m trying to reeducate myself, shifting into a career that doesn’t make much use of previous work experience.

And it feel exhausting. Sometimes I want to cry.

I want to believe this, I really do. But I don’t think that there’s a reward for surviving cancer beyond simply surviving cancer.
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Yes, I’m happy to be alive. But no, this was not the way I thought things would go. When initially I was told that I had a decent chance of surviving for five years, that was all I could think about. In fact, that was all that mattered.

I wasn’t thinking about the fact that if I managed to live through this, I’d still need to find a way to make a living. And the interruption that was cancer could do a number on that.

At this point, I need to stress that my intention is *not* to try to scare cancer patients into dreading survivorship. Goodness knows, there are enough things to navigate within the cancer experience as relate to the usual treatments that will take your energy and attention.

I wish nothing less for you than 100% remission and many years ahead to enjoy your “survivor” label.

At the same time, I encourage you to remain present and mindful of the fact that you might have to pivot if you’re not already well-established in your career. If things start to change in a direction that’s southward of what you expected, be patient and readjust your expectations. Nuture acceptance and keep an eye on how you can put yourself in a good position to meet the future. And be kind to yourself.

I’m still working on it.

Cancer Survivorship Ain’t For Sissies

With all the focus on breast cancer during October, pushing us to be warriors and fight our way through this, the concept of survivorship can get lost in the fray.

We talk about cancer treatment and get very granular about the procedures, whether surgery, chemotherapy or radiation therapy. And those do deserve a lot of discussion as they can be difficult to endure. Some, like chemo, have an almost legendary reputation and it’s important to be able to separate fact from fiction.

After all the noise and attention associated with cancer treatment, survivorship can leave some of us feeling alone.
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Consider: how many of us, upon hearing that we have breast cancer, preoccupy ourselves with worrying about what life will be like five years down the road? More likely, we’re thinking about what treatment will be like and are hoping that we’ll be around when it’s done!

But with so many women surviving breast cancer, it’s important to talk about what happens after the dust settles and you realize you’re on the other side of the treatment that you had so feared. Is it really the “other” side?

So much of my blog has been devoted to the life after cancer. After I documented my treatment journey, I turned around to get hit in the face with all the stuff that I wasn’t expecting.

One of those was endocrine therapy. Women with hormone receptor positive cancers aren’t done when the “tough stuff” is over. Tamoxifen and aromatase inhibitors are a whole new round of treatment that can affect your hair, your libido, your joints and more. Some women get hot flashes and night sweats. Some experience weight gain. And these are medications intended to be taken for a number of years.

There may be body image issues. Breast cancer surgery can leave women looking very different from their pre-cancer days. Like it or not, breasts are associated with womanhood. Whether lumpectomy or mastectomy, with or without reconstruction, there is a new normal that needs to be dealt with.

By seeking support and relating your story, you help not only others who are dealing with something similar in addition to yourself.
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And then cognitive issues like distractibility, loss of memory and difficulty processing concepts may come up. To make things more complicated, these may appear after treatment is in our rear view mirror and our loved ones may simply not appreciate what we’re dealing with. The bodies and minds of survivors may change in a way that they are not prepared for. Because, how do you anticipate something like this?

Survivorship does not mean that you never again have to think about cancer or its repercussions. There will be adjustments to your expectations as to how your life will be from now on. It’s important that those around you understand that just because you are done with the major cancer treatments, things might not feel familiar or normal.

So we need to be having this conversation with those around us and making opportunities for affected women to seek help and support. There is no shame in being a survivor who is also struggling. While it’s true that we are “lucky to be alive”, it does not mean that we have no right to seek a higher quality of life.

Don’t be afraid to talk about it. ❤

Six Years and 2 Days Ago, Panic

On Feb 8, 2017, I finally went to see my nurse practitioner about a breast lump that I’d originally noticed six months before, the previous August.

From the split second that the expression on her face shifted as she felt the lump and sent me off with an order for a diagnostic mammogram, everything changed. I went from hemming and hawing about spending the money on a copay for a doc appointment for something that would obviously turn out to be nothing…to a downward spiral into despair like I’d never felt before.

Memories of this period in my life are not very pleasant, so instead of loading up images of frightened faces and horrible possibilities, I’ve decided to post only peaceful pictures here.

Looking back on that time, knowing all the self-calming techniques and meditation methods that I currently practice, if I were going through this now one thing is very clear: I would still have panicked.

It bears mentioning that on Feb 8, 2017, I did not get my diagnosis. That appointment simply opened the door for scans that I was hoping I wouldn’t have to go through, but it devastated me regardless. In the two weeks that it took before I could actually go in for the mammogram and ultrasound, I died many times over.

The fact is, nothing ever prepares you for a cancer diagnosis. No matter what sort of mental calisthenics you practice, cancer is still CANCER. And even the idea that cancer could be a reality is terrifying.

There is no “alternative wording” that makes this easier. Sooner or later, you’d still bump up against that six-letter word that, for someone in my generation, meant a distinct possibility for a very sad ending (which arguably is an outdated and potentially irrational view, but that’s what you get).

Yeah, nothing stressful here. Just a sleepy kitten.

So rest assured, if you ever find yourself in this situation, no matter how you’re handling it, you’re doing a good job. Because you don’t really “handle” the news, you just splash around and try to keep your head above water.

Doctors, I’m told, practice delivering the news in a calm but empathic manner. Trust me, that’s kind of lost on the patient. Since my lump was clearly cancerous on the diagnostic ultrasound, I actually got the news broken to me twice:

My radiologist (after the ultrasound): “I have two things to tell you. One, you have cancer. Two, you’re going to be okay.”

My general practitioner (after the biopsy): “It’s as we feared. It’s cancer.”

See, whether the delivery is kind of upbeat with an attempt at a positive ending or whether it’s more reserved, anticipating the patient’s fear at hearing this, it doesn’t matter. Because once you cross that threshhold, you can’t turn back to “it’s nothing, have a nice day”. You are literally propelled forward into the next steps, and there will be many of them.

Room for one more image? How about tulips? I love tulips.

But there are a few things to remember. Being thrust headfirst into the world of cancer means that at least you’re not standing still like you are when you’re worrying about a diagnosis. Recalling Churchill’s famous quote, “When you’re going through hell, keep going”. Of all the times in a cancer journey, the point right around the diagnosis is the most terrifying because you know you have cancer but not necessarily how “bad” your situation is or what the next steps are.

There is relief in the movement of information and the passage of time. If there is a way to focus on the next step, always the next step, without getting overwhelmed by the tidal wave brought on by the concept of having cancer, you will be able to gingerly find yourself a path through which to navigate the cancer journey, and there is peace in that.

And if there isn’t peace…you’re still very normal. ❤

Cancer Patient vs. Cancer Survivor

This was the situation: I finished chemo, finished radiation. I had gotten to bang the “Whoopie! I’m done!” gong in the radiation oncology patient waiting area — very satisfying. I had my “exit interview” with the cancer staff. The worst was over.

Every cancer patient looks forward to the end of treatment and a clean bill of health. As a matter of fact, I’d been so focused on finishing that even when I could see the light at the end of the tunnel, I really couldn’t see past that point. Chemo was the monster that consumed me. I had dreamed about the end of treatment for weeks and weeks, trying to hold on mentally until that final infusion, and after that, the last radiation appointment. Finally, that day had come.

However, I still parked in the familiar “cancer patient” spots in the parking garage that allowed me quicker access to the hospital buildings, a necessity on busy days when I needed to get to my appointments promptly. My chemo port was still in because I would be receiving Herceptin (monoclonal antibody) infusions for about six more months, and even though Herceptin doesn’t have noticeable side effects, it had the potential to affect my heart.

So was I well? Was I sick? The tumor was gone, the treatment was over, my scans had come back clear, but the questions remained. My sense of self had experienced a powerful upheaval during treatment and I felt lost. As much as I hated it, I’d become comfortable with the idea of being a cancer patient. That was the known. The unknown was what came after that.

The unknown is scary and the uncertainty doesn’t simply go away. When you’re a patient, your medical team works out a plan based on your specific situation, and that’s your roadmap for the length of your treatment. When you pass into survivorship, you travel off the edge of the map. The remission rate for breast cancer is remarkably good, but it’s not guaranteed.

At some point, I left the map. I have the rest of my life to get comfortable navigating through what comes next.