Tag: Cancer Survivor

The Stuff after Cancer Treatment: Even When It’s Over, It’s Not Over

(Title image: Photo by Leon Seibert on Unsplash)

I stumbled across an article about another celebrity who has gone through breast cancer treatment. That’s not surprising, given the relatively high percentage of women, in particular, who have been diagnosed or are at heightened risk of the disease.

But this one—about celebrity organizer Clea Shearer (of The Home Edit, a home organizing company/brand/empire)—gave me pause for the specific reason that there was so much cancer-related hardship that continued after she finished her treatment.

In 2022, Clea was diagnosed with stage 2 breast cancer (“invasive mammary carcinoma”) and underwent the familiar treatments of surgery, chemotherapy and radiation therapy. However, it’s the complications of her double mastectomy that make her story very striking. To date (that is, as of the release of this article in People magazine a few days ago), she has undergone 14 surgeries and may be running out of options for breast reconstruction.

And just when you thought you were almost done…

This is not what anyone expects after they “finish” cancer treatment. In fact, Clea was declared cancer-free in November 2022. But it was clearly not the end of cancer-related effects for her.

I think it’s important for us to consider this when we try to be over-optimistic with cancer survivors. Pushing an upbeat attitude or telling survivors to “just be grateful” glosses over the reality of what they may continue to keep going through.

Yes, of course we are grateful. A cancer diagnosis is terrifying and for those of us who grew up when it was considered practically a death sentence, the idea of having it take your life is hard to get out of your head. In this day and age where social media describes the “condition” as d**th…well, cancer survivors have to meet the possibility head-on, minus the asterisks.

However long a survivor has survived is a cause for celebration and gratitude. But it’s not necessarily the end-of-story, fade-into-the-sunset ending. Clea’s experience is proof of that and I wish her strength and perseverance as she navigates the coming months.

Stories like Clea’s underscore the critical need to treat the whole patient, including offering emotional/mental health support, and not to simply stop the support when the cancer center-based treatment ends. Even when it might seem that treatment is done, it may just be the beginning of a new set of challenges.

Cancer This, Cancer That

(Title image: Photo by National Cancer Institute on Unsplash)

Cancer, cancer, cancer.

There is a part of me that would like to stop talking about cancer. Really.

My cancer diagnosis tops my “Worst Things I’ve Gone Through” list, more than any other crappy things that I’ve gone through. Treatment brought me to a screeching halt and forced me to rethink my expectations for what “success” looked like.

It wouldn’t be surprising if I wanted absolutely nothing to do with cancer and chose to never speak of it again.

However, I DID go through this. I WAS angry and frustrated and literally fearing for my life. So I want to own the fact that I faced one of my greatest health fears and was able to come out of the other end of the cancer tunnel.

Undoubtedly, most of my “success” was sheer luck and well-established medical protocols. There are many other cancer patients who go through the same thing but are not so fortunate. Until we know exactly what triggers the development of a tumor and can determine how to effectively avoid that, we will still be riding by the seat of our pants

In that case, isn’t it sort of odd to wear the “cancer survivor” badge like an achievement?

This goes without saying.
(Photo by National Cancer Institute on Unsplash)

And yet, it does feel like an achievement. Or perhaps, it feels like it gives me a purpose. The entire reason why this blog exists is because I had questions about the experience of being a cancer patient that I could not find answers for, and I wanted to offer what I had gone through in case it might help someone else.

As cancer recurrence became kinda, sorta, maybe less likely with each passing year, I still had an urge to let people know about the disease because it had been so huge in my life. At some point in a conversation, I’d stick in that I was a cancer survivor—it was hard not to, I realized, because there were so many ways that cancer had entangled itself in me.

And people would say congratulations for surviving and then the conversation would become a bit uncomfortable because no one really likes talking about cancer…and everyone would quiet down for a bit. I could easily keep going on about my experiences but I know I’d never get invited to another social event if I did, so I learned to shut up and change the subject.

This blog is my emotional, cancer-indulgent dumping ground.

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If someone mentions that they have a cancer diagnosis, I know what not to say first and foremost, but there’s a balancing act between allowing them the space to express themselves (especially if others around them don’t know what to say) and offering supportive bits of random information about things that actually matter to them.

In online forums, I’ve typed out a block of text…only to delete it before sending. Maybe it’s not as important for me to talk about what I went through as it is to simply be there to listen.

“Dear Princess Kate, I Can Relate”

(Title image: Photo by Bence Balla-Schottner on Unsplash)

Over the last week or so, there have been a number of news articles focused on Catherine, Princess of Wales, who has been talking about life after finishing her cancer treatment.

She is officially in remission from her unspecified cancer, having completed chemotherapy. However, in a conversation on July 2 with hospital patients, staff and volunteers at Colchester Hospital in Essex (in southeast England), the princess noted that there was still more to endure once she was past her cancer treatment.

This is summed up from an article in USA Today (and numerous other outlets):

Kate described the cancer diagnosis and treatment as “life-changing” for both patients and their loved ones. “You have to find your new normal and that takes time … And it’s a roller coaster. It’s not smooth, like you expect it to be,” she said, according to the outlet. “But the reality is you go through hard times. … “You put on a sort of brave face, stoicism through treatment. Treatment’s done, then it’s like, ‘I can crack on, get back to normal,’ but actually the phase afterwards is really, really difficult.”

Wow, this is so relatable! I’m grateful that Kate is discussing life after cancer treatment, especially because she’s a highly public figure.

Many cancer survivors have experiences similar to Kate’s, particularly those, such as breast cancer survivors with hormone-positive cancers, who continue to take “maintenance” medications like tamoxifen and aromatase inhibitors. While many patients expect chemotherapy and radiation to be tough, they are often not prepared for the side effects associated with endocrine treatments that are prescribed to be taken for years after finishing everything else.

Princess Kate breaks with royal protocol in speaking frankly about the struggles following the end of cancer treatment.
(Video from TODAY)

But even without endocrine therapy, many cancer survivors are left with long-lasting side effects of varying severity. Some may be truly life-changing. Most of them will prevent a return to “normal” as we used to know it.

That normal, however, is what others may be expecting of you. Or you might expect of yourself. And that’s tough. Kate mentions the importance of reaching out for professional support if it is especially difficult to manage the phase following treatment, and I concur 100%.

Because it’s not simply the side effects…it’s the frustration that we feel with having the side effects linger. Or even the reactions of loved ones who don’t understand why things aren’t back to how they used to be. There is a grieving process associated with the loss of our previous lives that those around us may not appreciate, so I’m glad that Princess Kate is using her position to bring this out into the open.

Year 8 Mammogram: Can’t Shake This Feeling

(Title image: Photo by 🐣 Luca Iaconelli 🦊 on Unsplash)

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?
(Photo by Dan Freeman on Unsplash)

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!
(Photo by Jacob Dyer on Unsplash)

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!

I Thought I Was Doing Better

(Title image: Photo by Merch HÜSEY on Unsplash)

Last week, I met with a friend that I don’t see often. We were talking about what was going on in our lives and he related how he loved where he lived right now, and put a positive spin on everything in his life, even when talking about negative happenings.

He sounded sunny and was handling the tough stuff that came his way.

But then it was my turn to tell him about what I’d been up to. I started describing what I’d been dealing with: my father’s decline and death last year, worries about my mother’s well-being, concerns about the increasing cost-of-living…

My friend smiled at me. The last time he had talked to me, he said, I was stressed about something else. In fact, every time he calls me, there’s some new thing that I’m stressed about.

And of course he’s right. As much as I’ve improved in handling anxiety using all the tools I’ve developed to calm myself down—and, yes, I’ve found success with that—the overarching feeling that I have is that I’m playing whack-a-mole with my worries.

It’s as if I’m trying to regain my footing, but something new comes up and knocks me off balance again.

I admit it. I’m feeling worn out.
(Photo by Anca Gabriela Zosin on Unsplash)

After getting past cancer treatments like chemotherapy and radiation, you’d think that the skies would look brighter and my outlook would be more positive. And for quite some time that was completely true.

But as endocrine therapy wore on and I went through menopause, my spirit suffered. The luster of surviving cancer started wearing off. That’s embarrasing to admit, especially when I have lost friends and family to the disease and know of many others desperately fighting it.

But even being aware of that, my day-to-day seems to have become darker overall. I start the day with energy to get things done but by evening I’m exhausted and sometimes overwhelmed by what’s in front of me.

I know some of this is my own doing. In fact, one of the big, scary changes that I was faced with this year just sorted itself out. It was simpler than I expected (note my previous post). And then my son was admitted to the college he wanted to attend. All these are refreshing successes that I should have spent time basking in. But it didn’t take long for the clouds to gather again.

After hearing my friend’s assessment of me, I am trying to figure out whether what I’m going through is really getting harder? Or have I gradually been losing my ability to pull myself out of a funk? And once the uncertainties are settled, will I bounce back?

I feel disappointed in myself, which is exactly part of the problem. Lack of self-compassion simply compounds the stress. You know the carrot-and-stick analogy? Well, I’ve tossed the carrot and am just beating myself with the stick.

Back to the drawing board.

Farming ‘Likes’ on Instagram

(Title image: Photo by Chelsea Gates on Unsplash)

I am a reasonably flexible person although I’ve become less so with age and especially following cancer treatment. Yoga asanas that I used to be able to do…well, they don’t come so easily anymore, if at all.

After going through my yoga teacher training in my 50s and now in the middle of an Oncology Yoga (y4c) certification program, I spend a lot of time feeling like an imposter.

There’s an element of shame to this. I tell myself I should be more flexible, I should have better balance, I should be able to hold more advanced poses and for longer.

In my y4c training, the manual referenced a concept, versions of which I’ve seen before and have written about myself, but the message continues to hold true (see this article). The proliferation on social media of young, flexible bodies in extremely inaccessible poses for the vast majority of the population not only hurts the practice, but completely misses the point.

It seems like a lot of images that show up as “yoga” on platforms such as Instagram are part (if not wholly) acrobatics and contortions. But yoga is actually a spiritual practice and only one part of it, the one that is overemphasized in the west, is physical.

POV: You’re a cancer patient and your forward-thinking oncologist suggests that you try yoga to help alleviate some of your side effects. But this is what you think of when you hear “yoga”. What are the chances that you’ll try a yoga class? What are the chances that you’ll even find a yoga class that is appropriate for your current condition? Or will be able to afford one?
(Photo by Wesley Tingey on Unsplash)

And that physical practice is a big money maker. If you doubt that, take a look at how many yoga studios exist in affluent areas, and the dearth of studios in more moderate-to-low valued ones.

Yoga was what helped me through my cancer diagnosis, treatments and beyond. But that yoga was minus the “workout”. My workouts during cancer focused more on rowing and lifting weights rather than Sun Salutations and balance asanas. Yoga was for my mind and spirit, to maintain connection and grounding, to not get lost in my fears and to be grateful for what I had.

This is not to say that it’s not impressive when people post challenging asanas on social media. Some of the wonderful teachers that I have trained with have shared those kinds of posts. It’s natural to want to show off a physical achievement that you’ve worked so hard for. In a way, that’s the whole point of social media posts. And that’s also part of the problem with social media.

Frankly, yoga has become deeply entrenched in the United States as a physical practice and nothing is going to change that now. We can be hopeful that those who dutifully attend yoga class, rolled up mat under the arm, will take the time to understand the depth of this ancient practice. But regardless, the flow of the class still brings peace to the mind in a way that my ‘hardcore’ workouts do not.

There are a lot of people who could benefit greatly from the practice of yoga in all its forms, matching breath to movement and developing a mind-body connection. Cancer patients and survivors are some of those people. But if all they know is that yoga demands extreme flexibility, even hypermobility, and statue-like balance, they will avoid the practice as too advanced and inaccessible to them.

If you are a teacher, please keep that in mind. If you are a potential student, please don’t let social media keep you away from such a beneficial form of exercise for both your body and your mind. And if you are a current practitioner, please dig deeper to understand the roots of yoga to honor the cultural tradition from which it arose. It’s not just for likes on Instagram.

“Them’s Fightin’ Words!”: Discussing Cancer Language

(Photo by Thao LEE on Unsplash)

Here’s something that I want to share from my Yoga4Cancer teacher training class. It’s an episode from a BBC podcast on the language that we use to talk about cancer, and it is excellent.

The podcast features a group of people touched by cancer: survivors who have finished their treatment and those who are still undergoing it. In one case, there is a woman who will never finish treatment because she needs to stay on it for the rest of her life.

Their topic of conversation circles around how they describe their situations and how they feel about the words that others use. I don’t want to give too much away because the discussion is engaging and even humorous, so I do encourage you to listen for yourselves.

BBC Radio 4 “Fighting Talk: How Language Can Make Us Better” (https://www.bbc.co.uk/programmes/m0001g8w).

I’d be really interested in knowing what your opinion on this is. Many of us might start with more aggressive talk concerning our cancer diagnoses: fight, beat, battle, etc. And yet as you’ll see, those terms can become problematic. We may get worn down by them as the treatment progresses.

How about “toxic positivity” from others? This is the tendency to push a narrative of upbeat positivity no matter what, even when it’s not appropriate to the situation. Such encouragement often ignores the tumultuous inner state of the cancer patient and can lead to a feeling of isolation

Open discussions about cancer help maintain an active support network for the diagnosed individual.
(Photo by Helena Lopes on Unsplash)

Everyone is different and as cancer survivors, we don’t expect well-meaning friends and family to know what personally irks us: for instance, there are differences between men and women in how they react to “fighting” metaphors. But it’s useful to bring a conversation like this into the open because cancer is one of those diseases that may make people around us feel uncomfortable.

A lot of people may not know what to say in response to your diagnosis, so they’ll say something vague and positive, or even nothing at all…and some may avoid you altogether. That can be unfortunate at a time where community support is especially important.

If you are currently undergoing treatment, understand that many around you might not have the vocabulary for talking about cancer in a way that resonates with you.

And if you are one of those friends who doesn’t know what to say, it can be best to admit that. Trying, “I don’t know what to say because I don’t want to say anything wrong,” can be more heartfelt and helpful than an awkwardly-cheery, “You got this!” or “Don’t give up the fight!”

I hope you enjoy the podcast episode!

“It’s Not a Toomah”: My Aura Theory

(Title image: Photo by Daniele Levis Pelusi on Unsplash)

I’ve written in my blog that I was experiencing strange visual disturbances, most likely visual migraine auras. Note: I’ve never experienced migraine pain.

This is particularly worrisome for me as a survivor of triple-positive breast cancer, as there is a greater chance of that type of cancer metastasizing to the brain. Presumably, a growing tumor could restrict blood flow to areas of the brain that could result in me seeing strange things.

This was of great concern to my ophthalmologist. However, there was no pain associated with the auras, and pain would have been expected (but not necessarily required) if the auras were caused by a tumor.

There were other confounding variables, too. Since the summer of 2024, shortly before my father’s death, I had noticed that I was doing a lot of involuntary “sighing”. I’d experienced this type of sighing before, but this time it kept going for months, sometimes occurring a number of times an hour.

Naturally I googled it, and Dr. Google pointed out that excessive sighing was potentially associated with undiagnosed anxiety and depression. When I finally started writing out all my stressors, it because obvious to me that I had been far more deeply affected by what was going on in my life than I imagined.

So, after my appointments on Nov 22, I took time to grieve my father’s death, which I hadn’t done up to then. I thought I had accepted his passing and moved on, but clearly I hadn’t. I sought hugs and solace from family members and expressed what I was feeling.

My last aura was on Nov 29th. After that, along with allowing space for grief, I expanded my time in meditation, added up to an hour of breathwork a day and even included a daily cup of ceremonial-grade cacao (for the theobromine).

Mindfulness took a front seat. I paused at various points of the day to simply take deep breaths. I paid attention to what my body was doing and what thoughts were running through my mind. I made a concerted effort to show compassion to myself, more than I had in a long time.

The auras did not come back. As of this writing, it has been 45 days since the last aura. I had been having them once a week, and at their worst, a couple a week and even two on one evening.

I am well aware of the power of the mind. My educational background is in graduate-level psychology and I myself have experienced psychosomatic pain before. But honestly, I never expected to have such a striking response to anxiety/depression/grief.

I have searched for a good visual representation of an aura and it’s hard to find one that actually reflects what I was experiencing. It was something like this:

This is not exactly what it looks like for me, as some of my auras have been “thicker” and more “stained glass-like” in color, looking more zigzagged (as if the entire half-circle is made up of triangular pieces of vividly bright LED-like colors). Also, mine were gone within about 20 minutes.

That’s not an insignificant reaction to something that is going on in my head. My brain created those auras. That is amazing.

I should mention, I never had an MRI so technically a tumor cannot be ruled out. And neither can some other cause that I have not considered. However, the fact that my auras stopped after I put concerted effort into exploring my anxiety, acknowledging depression and recognizing that I was not okay with the pressures I was under suggests that it’s probably not a tumor.

I Saw My Oncologist…and Left Ridiculously Happy

(Title image: Photo by Nick Fewings on Unsplash)

Yep, this is another installment of “I had another oncologist appointment today”. This time I’m marking seven years since completing my chemo treatment, which I can assure you at the time was a very happy event…

…marred only by that little nail infection a few weeks later. But don’t go there unless you have a strong stomach.

Regardless, I had a great meeting with my oncologist. The concern now is about whether I’m experiencing anything cancer-related, either long-term side effects or—perish the thought—a recurrence. Today the answer was neither.

We talked about the recent death of my father…and that’s pretty much the way the appointment went–catching up on the last six months. Naturally, I forgot to tell him about a bunch of the other concerns I had, little weird things in my body. But really, they’re not unusual given what I’ve gone through.

If there’s one thing I’ve learned, it’s that I need to slow down when interpreting body sensations as health problems. Usually they’re not. (Even though once they were cancer.)
(Photo by LOGAN WEAVER | @LGNWVR on Unsplash)

We did, however, discuss how it takes a little while to get used to all those sensations in your body. After cancer, I was on high alert. My medical team was asking detailed questions about what I was feeling, and as a result, I was laser-focused on every twitch and twinge…and maybe some that I just imagined. At one point, I was sent for a brain MRI because of what I feared were serious cognitive issues. But in reality it was anxiety, not a tumor.

Seven years out, however, you kinda get expect all those funny sensations and don’t interpret them as being dangerous anymore. Even the heart palpitations that I would get from time to time…yeah, I still get those, maybe once a week, maybe a couple of times a month. But they only last a handful of seconds and I no longer think that my heart is failing (especially not when I can turn around and do a HIIT workout). I haven’t been back to the cardiologist and my oncologist agrees that it’s not necessary.

He asked if I wanted to come back in six months. Sure, I like being back in the Cancer Center as *NOT* a cancer patient. It’s nice being there and remembering doing jigsaw puzzles in the radiation oncology waiting room, or even feeling well-taken-care of after my treatments were done. There ARE positive memories in a place that you’d think would only be negative.

That can change very quickly, of course. But for the time being, I’m feeling happy.

I Am an Imperfect Yoga Teacher

(Title image: Photo by Cameron Raynes on Unsplash)

A couple of months ago I received an amazing invitation: to teach yoga to cancer survivors at our local Cancer Survivors Day event on June 1st.

What an amazing opportunity! The sole reason that I had gone through yoga teacher training and registered with the Yoga Alliance was to eventually teach cancer survivors. To have this invitation fall into my lap was serendipity at its very finest!

It was also terrifying.

Ever been offered an amazing opportunity and felt like you’re still a little too ‘green’ to handle it?
(Photo by Nagara Oyodo on Unsplash)

My first impulse was to run and hide under the most solid object that I could find. You know, sometimes you have great goals, but you don’t consider what you will do if you actually manage to achieve them. I didn’t feel confident that I was ready for something that had always seemed several years away.

But I still had enought time to prepare for this class. I had taken a specialty 5-hour training on teaching cancer survivors, I had 16 years of maintaining a personal trainer certification with a clinical/academic focus and, importantly, I was a cancer survivor myself. I kinda knew what’s what.

At the same time, I felt a nagging doubt. What if I created a yoga class that people hated? What if someone got injured? What if I couldn’t memorize the sequence, kept stumbling over words or blanked out in the middle of it?

The more I practiced the sequence with friends and family, the more opportunities I had to beat myself up over every time I said “right” instead of “left”. Or said “arm” instead of “hand”. Or anything else that seemed less than perfect. The possibility of looking like a bad teacher and shaming myself opened the door for anxiety to flood my mind.

Nothing quite like thinking you’re not good enough and then proving yourself wrong!
(Photo by Clay Banks on Unsplash)

Eventually, I recognized that I was driving myself nuts with unrealistic expectations. I also realized that this is a bad habit that I’ve fallen into on other occasions too. So I took some time to sit quietly and reflect on what was happening.

I am an imperfect yoga teacher. While I try to mirror movements for my students, I mess up once in a while (mirroring can be really hard!). I might not always use the right word to describe a body part. I might forget to mention a cue and then have to stick the instruction in later. I might even forget whether I forgot to say something!

But when the day came to teach to this amazing group of people, my students followed along without a problem. And you know what? After class, they clapped for me. My heart was so full!

I may be an imperfect yoga teacher but maybe that’s okay.