The greeter for my husband’s brain-cancer support group turned to me with a smile and pointed to the rows of name tags on the table in front of her. “Patient or Caregiver?” she asked.

A reasonable question, since the support group, which met monthly in a conference room at the University of Washington Medical Center, always began with a whole-group check-in and then broke into two smaller contingents: Patient and Caregiver. The Patients would stay in the conference room while the Caregivers, mostly family members and spouses, adjourned to the nearby cafeteria to discuss the challenges of caring for a loved one with brain cancer.

But that evening, the Patient-or-Caregiver question rankled. “I am not a caregiver!” I snapped.

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Ironically, though, I’ve spent my whole life caring for people, starting with my older brother, Mark.

Mark was born with autism and didn’t speak until he was eight years old. My parents provided for all his basic needs, of course. In fact, my father, Dr. Bernard Rimland, made it his life’s mission to research autism’s causes and possible treatments to help Mark and others like him. This pursuit eventually resulted in my dad being known as the “grandfather of modern autism research.” Wanting to make my own contribution, I took on the job of protecting my big brother. If any neighborhood kids dared to tease or bully Mark, I valiantly came to his defense.

Then, several years after my father’s death in 2006, it was my mother who needed care.

This was complicated by the fact that I lived in Seattle, while she and my two brothers resided in our family home in San Diego. I hated that I couldn’t be by her side and instead had to delegate her day-to-day care to others. But at the same time, I couldn’t very well quit my job and abandon my husband, Steven, who needed me, too. So, during her three-year slide into dementia, I spent hours on the phone navigating her long-term care insurance, arranging home-care visits, communicating with doctors and physical therapists, and, eventually, enrolling her in an assisted living facility.

To make matters even more complex, Mom was caring for Mark and my younger brother, Paul, both of whom still lived with her. The more her dementia progressed, the less equipped she became to handle the responsibility of caring for two grown sons, one with autism and the other suffering from terminal kidney disease. Still, clinging to the last vestiges of pride, she resisted handing the reins to me. Finally, after much urging, she allowed me to take over as Mark’s legal conservator, and I was able to move him into a wonderful group home for developmentally disabled adults, where he lives happily to this day.

Once Mom passed away, it was time to take care of my younger brother, Paul, who in his final years often leaned on me for emotional support.

He had chosen me as his Medical Power of Attorney, so when, two years ago this November, he lay in a bed in the hospital’s Medical I.C.U., intubated and hooked up to a dozen machines, I was the one who had to make the decision to let him go. I held his hand, tears streaming down my cheeks, as the squiggles on the bedside monitor settled into a flat, straight line.

Which brings me back to that evening at the support group. The wife of another Patient, overhearing my comment that I was not Steven’s caregiver, leaned toward me with a conspiratorial chuckle. “So,” she said, “you don’t care much for Steven.”

But, of course, I do care for Steven, in every sense of the word.

Although I resist the caregiver label, there are many ways in which Steven does need my assistance. Because of cognitive disabilities caused by removal of his brain tumor, I must take on the bulk of responsibility for tasks that require short-term memory and executive function such as paying bills and organizing for taxes, keeping track of appointments, and planning travel. But at the same time, I am Steven’s wife – his companion, lover, and fellow PBS-murder-mystery afficionado. By labeling myself as his caregiver, I’d risk changing the dynamic between us.

Alternative labels

It’s the giver part of the caregiver label that I have a problem with. For me, the give in caregiver suggests a one-way transaction – I give, you take – when in truth, there is a natural ebb and flow to caring. Right now, I’m able to care for you; tomorrow, I may need your care. I offer my care to others not to get something in return, but because I love them, and because I’m grateful for the love they have shared with me.

Maybe I’ll follow the lead of Victoria, whose Substack, Carer Mentor, is one of my favorites, and drop the giver altogether to declare myself simply a carer. Or perhaps, even more accurately, a co-carer, since in this life, we are all called upon to care for each other.

In the end, though, actions matter more than words, and supporting my husband that evening was more important than scoring a semantic victory. I picked up my name tag, clearly labeled with the word Caregiver, slapped it onto the front of my sweater, and grabbed Steven’s hand. Together, we walked into the support group meeting.

What do you think?

What’s your opinion? Is caregiver the best way to describe a person who cares for and assists another, or can you suggest an alternate word? Have you ever been labeled with a term that caused you to bristle? Please tell me about it in the comments!

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Paid subscribers, don’t forget to pick up your new Paid Subscriber Perk, a PDF with ten tips for writing about your cancer experience.

Until next time, let’s rejoice in the fact that we’re Still Here.

I tend to read a lot of medical memoirs, not only because I’m currently writing a memoir that touches on my own teenage experience with Hodgkin’s Lymphoma, but also because I’m interested in how other people survive and make meaning of serious illness. When a fellow memoirist recommended K.J Ramsey’s The Place Between Our Pains, I knew I had to read it. And once I read it, I knew I had to share it with you.

I hadn’t heard of K.J. Ramsey before reading this memoir, but according to her bio, she’s a trauma therapist, as well as the author of two nonfiction books about using prayer to overcome trauma and her own recovery from spiritual abuse. I was a little leery about Ramsey’s up-front self-identification as a Christian, since I am not a Christian myself and worried that her prose might be preachy. However, I found her writing about faith in this memoir to be deeply spiritual rather than dogmatic. Ramsey’s Substack publication, Embodied, boasts over ten thousand subscribers.

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Interestingly, Ramsey set out to write a very different book than the one she ended up publishing. Her original idea was to tour the national parks where she found joy as a child. She was recovering from both complex trauma and POTS (postural orthostatic tachycardia syndrome) and hoped to, in her own words, “…dare myself to discover that joy is more trustworthy than trauma.” It is in the beauty of the national parks that the memoir begins.

The book’s trajectory changes dramatically when, during her trip, Ramsey has trouble self-injecting a medication she must infuse weekly to treat her alphabet soup of chronic autoimmune illnesses. When she returns home, doctors tell her that since her veins are shot, she’ll need to have a port implanted in her chest.

From there, the real story of extreme medical trauma begins. I don’t want to give away too much; suffice it to say that Ramsey goes through more than any human being should have to handle.

Sounds like a grim read, right?

Fear not, Ramsey manages to season her prose with enough humor to keep it engaging and lively. She also salts it with a fair amount of profanity, so if you find swearing offensive, this may not be the book for you. (Although, frankly, if I were in her shoes, I’d be dropping f-bombs, too!) Ramsey’s anger, grief, and sometimes sheer crankiness at her situation are palpable in each of the memoir’s raw, bite-sized chapters, but through it all, she chases the moments of joy between her pains.

Although this memoir is about chronic autoimmune disease rather than cancer, most cancer survivors will relate to Ramsey’s sense of helplessness, of being assailed by one damn complication after another. I remember finally coming home from a three-week hospital stay as a teen, only to contract a U.T.I. so severe that I peed blood. Although my experience was nothing compared with the cascading series of horrifying complications that Ramsey went through, I could viscerally connect with her sense of frustration, hopelessness, and despair.

One element of Ramsey’s story that I couldn’t relate to, however, was the support system that surrounded her. Her husband and close friends were with her every step of the way, whereas I often felt that I was dealing with my cancer treatment alone. Also, at age fifteen, I hadn’t yet attained the kind of self-awareness that would have allowed me to find the joy hidden within my horrific experience, as Ramsey was ultimately able to do.

My takeaway from this powerful memoir is that pain and joy can co-exist, and that if we allow it to, joy can surprise us, even in times of deepest suffering. That joy, according to Ramsey, comes from connection and interdependence:

“…aliveness is carried between us, in the place between our pains, not soley on the strength of our own bones.”

A message that we, as cancer survivors, desperately need to hear: We are not in this alone.

What are you reading?

Have you come across a book recently that might be of particular interest to Still Here readers? Is there a book you’d especially like me to review? Please let me know in the comments!

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Celebrating four months on Substack!

To celebrate my four-month anniversary on Substack, I’ve added a perk for all my paid subscribers! If you’re already a paid subscriber, go to the Subscriber Perks section of my website to unlock Ten Tips for Writing About Your Cancer Experience, a PDF I’ve created just for readers of Still Here. If you want to upgrade from free to paid, I’ve lowered the price of each of my subscription tiers to make that more affordable.

And, of course, there is no obligation to upgrade. I’m always grateful for my free subscribers, as well. Everyone is welcome, and I’ll never paywall a post.

Thank you so much for your likes, comments, and restacks. Each of these actions helps new readers who would benefit from this publication find me. Until next time, let the world know that you’re Still Here.

Before I plunge into today’s topic, I’d like to thank everyone who shared a haiku in my last post’s comments. If you haven’t done so already, I invite you to go back and take a look at all the wonderful contributions. Your work truly floored me, and I feel privileged to have witnessed your outpouring of creativity. I entered each poet’s name into a random drawing; scroll to the end of this post to see who won the signed copy of my YA novel, FLYAWAY.

How (not) to talk about cancer

Now, on to the subject at hand: how (not) to talk about cancer. To be honest, I had a different post planned for this week, but then I read Hans Casteel’s hilarious “Words and Phrases That Should be Banned from all Cancer Conversations”on his brilliant Substack Oncology Underground. His post made me reexamine how I talk – and write – about cancer, and I knew I needed to share my thoughts with you.

Words of war

For the most part, I agree with Casteel. Like him, I have always felt uncomfortable with the violent words often used to describe the experience of being treated for cancer: battle, warrior, struggle, fight, win, lose. This type of language personifies the disease, implying that it attacks – another violent word – with malicious intent. Repeat after me: Cancer is the result of mutations in DNA that cause cells to grow out of control. Although these renegade cells can wreak havoc on your life, it’s not personal. You can put away the AK-47. You’re treating a disease, not going to war.

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Words of “inspiration”

I’m also solidly with Casteel in his assertion that the platitudes some people spout at cancer patients are inauthentic and patronizing. He particularly calls out “Everything happens for a reason” and “Blessing in disguise.” While sayings like these are meant to inspire positivity, what they actually do is encourage guilt. They imply that a cancer patient should be grateful for the traumatic experience of having cancer. I would add to the guilt-generating list any variation of “With hope, anything is possible.” Trust me, your chemo didn’t stop working because you failed to hope hard enough.

Aren’t you lucky?

Another phrase Casteel and I agree on as a no-no is “good cancer.” Shortly after I was diagnosed with Stage IV Hodgkin’s Lymphoma, a doctor told me I was lucky, because when it comes to cancer, Hodgkin’s Lymphoma is a good one to have. I know he meant to encourage me with Hodgkin’s track record of being highly treatable, but instead, on top of the trauma of hospitalization, surgery, and chemo, I felt saddled with the burden of feeling lucky for having a “good cancer”.

Bad trip

So, for the most part, Casteel and I are on the same page. But when I saw that he listed the word journey not once, but twice, as one that should be banned from cancer conversations, I cringed. I use that word a lot. According to Casteel, journey makes cancer sound like a road trip. I agree that, if anything, cancer is more like a bad trip, in the L.S.D. sense of the phrase. But when I write about the “cancer journey,” I’m speaking of a process with a beginning (symptoms), a middle (diagnosis), and an end (remission, cure, recurrence, or death). Although journey does register on my woo-woo meter, I’ll continue to use it until I find a better way to describe the grim march along cancer’s timeline.

Survivor, but not the TV show

And then there’s survivor, which Casteel mentions as a word that gives people who are frightened of cancer – often not the patients themselves – something to hold onto. I’ll freely admit that I identify as a cancer survivor. Not only is it an officially accepted term used by organizations such as the National Cancer Institute, but it’s also concise and to the point. “A person with a history of cancer, from diagnosis through the remainder of their life” doesn’t have much of a ring to it. If you can think of a more palatable way to label those of us who have been through cancer’s mill and come out the other side, please let me know. Until then, I’ll stick with cancer survivor.

Pick your own poison

In the end, does it really matter how we talk about cancer? Just as every patient experiences the disease in their own way, I think we should each use the words that work for us. While, as I’ve said, I’m not a fan of the struggle/fight/battleterminology, if those words motivate someone to power through their treatment, who am I to take that language away? And if telling me that cancer is a blessing helps my loved ones come to terms with my disease, let them shout inspirational quotes from the rooftops.

What about you? Are there specific words or phrases in the cancer lexicon that drive you up a wall? Can you suggest an alternative to cancer journey and/or cancer survivor? I truly want to know, so please share your thoughts in the comments.

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And the winner is…

The winner of the random haiku drawing is… Elizabeth Solazzo!

The poem Elizabeth shared is a beautiful tribute to her husband before his death. The title? Still Here. Even though her poem is not a haiku, I loved it so much that I entered her in the drawing, anyway. It is too long to print in its entirety, but here is a taste:

You drift into slumber.

My breath lengthens,

slows to match yours

as sleep comes for me.

I breathe easy beside you

these tiny sounds assure me

that you are still here beside me.

Congratulations, Elizabeth, I will be in touch about sending you a copy of FLYAWAY.

.

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Thank you so much for reading, and for your likes, comments, and restacks. Until next time, hold fast to the fact that you’re Still Here.

This week, I’ve decided to give everyone, including me, a break from my lengthy, essay-style posts. Instead, I’m sharing a short – make that very short – piece of poetry. In fact, haiku, the traditional three-line Japanese poem, is about as short and sweet as poetry can get.

As you may remember from elementary school, haiku follows a 5-7-5 structure: five syllables (not words) in the first line, seven in the second line, and five again in the third line. Although most traditional haiku focus on nature – moonlight reflecting on a pond, cherry blossoms falling from a tree – it’s possible to write a haiku about almost anything.

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My goal for this post was to write a haiku centering on some aspect of the cancer patient/survivor/caregiver experience. Here’s what I came up with:

We’ve known all along

That there would be an ending.

Still, let us begin.

Okay, it’s not going to win any awards, but I enjoyed writing it. I like the fact that this haiku could refer to several things – an endeavor, a relationship, or life itself.

Your turn

Now, I invite you to write your own haiku. Don’t worry about creating a masterpiece; simply enjoy the process. Share your haiku in the comments, and I’ll enter you in a random drawing (no, I won’t be judging anyone’s creative work) for a signed paperback copy of my Young Adult novel, FLYAWAY.

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Anyone can enter. You don’t have to be a cancer patient or survivor, but please make your haiku at least cancer adjacent. Basically, anything about the experience of living in a human body is fair game.

Take your time. I’ll accept haiku in the comments to this post through midnight on Sunday, July 26^th and will announce the winner in my next post on Wednesday, August 5^th.

Appreciate the work of others. Whether you share a haiku or not, I hope you’ll return to the comments over the next few days to enjoy, “like,” and comment on others’ haikus.

I look forward to seeing your creativity unfold.

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Until next time, celebrate the fact that you’re Still Here.

Cancer survivors’ emotional menus present a variety of choices. Fear and anxiety are the specials of the day, most often served with sides of anger, sadness, or resignation. On special occasions – a clear scan, for instance – we might even indulge in a sparkling glass of joy. But one emotion shows up on our plates all too often, even when we have every right to delete it from our bills of fare.

The guilt go-to

For many of us, guilt is the go-to. We feel guilty for being a burden, for not being fully available to our loved ones. We feel responsible for causing grief or worry. And sadly, some of us may even blame ourselves for being diagnosed with cancer.

When I was in my twenties, just a few years after finishing chemo for Stage IV Hodgkin’s Lymphoma, I picked up a copy of the book You Can Heal Your Life by Louise Hay, which was very popular at the time. The premise of the book is that we create illness in our bodies through limiting beliefs, and that by replacing those beliefs with positive ones, we can bring our bodies back to health. Paging through the book, I found a list of symptoms and diseases with corresponding causes.

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According to Hay, Hodgkin’s is caused by repressed anger and the fear of not being good enough.

I didn’t buy it then, and I don’t buy it now.

While I do believe in the impact of beliefs and thought patterns on our lives, I draw the line at blaming myself for developing cancer. Cancer is the result of mutations in cell DNA that cause the cells to grow out of control. Period.

Cancer is not a punishment.

Cancer is not a referendum on lifestyle choices.

Cancer is not a sign of moral failure.

Cancer is not our fault.

My dear friend Alina, who passed away from brain cancer just over a year ago, kept trying to understand what she had done to cause her tumor. “I eat a healthy diet,” she told me repeatedly in the months before her death. “I exercise every day. Why would this happen to me?” Thinking her nightly glass of red wine might be to blame, she began denying herself that simple pleasure.

Truth is, there’s nothing Alina could have done to stave off her tumor.

Sometimes, cancer just happens.

It’s even more tempting to assign blame when someone’s disease has a correlation to a lifestyle choice. However, I refuse to blame my grandma for her emphysema, even though she smoked cigarettes all her life. She was in the grip of an addiction so strong that she would sneak into the bathroom and light up, even while hooked to an oxygen tank. If anyone is responsible for my grandma’s illness, it’s the corporations who profited from her addiction and the marketers who convinced her that smoking cigarettes would make her look sophisticated and sexy.

The shame game

For cancer survivors, the only emotion more insidious than guilt is shame. Guilt focuses on our behavior, while shame judges our worth as human beings. As researcher and author Brene Brown put it, “Shame is ‘I am bad.’ Guilt is ‘I did something bad.’”

Shame and cancer often go together. For starters, there are the disease’s physical manifestations: You lose your hair to chemo. You lose your breast to a mastectomy. You lose your ability to walk, to have sex, or even to breathe. These losses set you apart from others, making you feel less-than.

Then there’s the fact that some cancers invade “private” body parts: breasts, prostates, colons. Parts of your anatomy that are usually sidestepped in polite conversation.

Although, truthfully, any type of cancer can be uncomfortable to talk about. When people avoid the subject of your health or speak about it in whispers, you get the message that there is not only something wrong with you, but about you.

I believe, though, that whispers and silence signal the fear of others rather than any shamefulness inherent in your disease. Facing the illness of someone you love is heartbreaking; facing their potential loss is devastating; facing your own mortality is unthinkable. So when someone tiptoes around your cancer or avoids speaking of it altogether, let compassion for their fear replace shame about yourself.

Guilt and shame have their place. Feeling guilty about the pair of jeans you shoplifted from the mall? Completely appropriate. But for cancer survivors who turn to guilt or shame as an automatic response, these emotions are not only unjustified but can diminish our well-deserved appetite for the pleasures in life.

Let’s feast

So, my friends, let’s strike unwarranted guilt and shame from our emotional menus. Instead, we’ll feast on excitement and anger, sadness and surprise. And as often as possible, let’s lose ourselves in long, deep drinks of pure joy.

I hope you won’t mind if I indulge in an extra glass of red wine for Alina.

Keep the conversation going

What’s on your menu? Have undeserved guilt and/or shame ever found their way onto your emotional plate? I’d love to hear about your experiences in the comments.

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I appreciate you!

Our community is growing! I want to thank all my readers, and most especially my subscribers, for making Still Here a safe, vibrant place to share reflections on cancer survival.

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Until next time, let’s toast to the fact that we’re Still Here.

When delivering your cancer diagnosis, your doctor will overwhelm you with information about disease progression, treatment options, and possible side effects. But likely no one will prepare you for the impact that cancer might have on your love life for years to come. In future posts, I’ll explore in more detail the many ways the disease can influence self-image and affect relationships, but today, in the afterglow of my anniversary festivities, I’ll start the conversation by sharing the story of my own search for love after chemo.

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Body shame

Even before being diagnosed with Stage IV Hodgkin’s Lymphoma, I had already begun to feel shame about my body. The early symptoms of the disease included significant weight loss and red, swollen bumps along my calves. I was fifteen years old and supremely conscious of my appearance, so these symptoms alone were devastating. Then, once I was diagnosed, I underwent staging surgery that left a raw, ugly scar snaking the length of my abdomen. As if that weren’t enough, the harsh chemo drugs caused my hair to fall out. Although thankfully I never went completely bald, I did attend my first year of high school in a wig. Not a fun experience for a teen girl.

But even more insidious than the self-consciousness about my appearance was the shame about having cancer at all. In my 15-year-old mind, it was a disease for old people, the disease my grandfather had died of. It set me apart from my peers when all I wanted was to fit in.

Gaydar alert

Like any normal young woman, I longed for romance and love – and, of course, sex. But at the same time, I didn’t feel worthy of them. Beginning in high school and continuing through my first years of college, I found myself attracted to a series of young men whom I later discovered were gay. In one case, I even fell for an openly gay man. Every one of these wonderful men were completely worthy of affection but incapable of giving me the love I yearned for.

At the time, I blamed my tendency to choose gay men on a faulty gaydar. Since then, I’ve come to believe that my gaydar was in perfect working order and did its job of leading me instinctively toward men who felt safe. Men with whom I could be emotionally intimate, but who would never want to see me naked. Most importantly, men who would reinforce my belief that I was unworthy of romantic and sexual love.

Love hurts

Once I finished chemo and was declared in full remission, I decided to put my cancer experience behind me and forget it ever happened. For the first time, I allowed requited love into my life. At age 20, I plunged into the relationship pool headfirst and fell in love with the man who became my first husband…and eight years later became my ex-husband. Cancer was not exclusively to blame for our divorce, but shutting my partner out from that essential part of my history certainly played a part. A subsequent long-term relationship ended in heartbreak, as well.

Desperate to get my life working again, I started seeing a therapist. I also enrolled in the Landmark Forum, an offshoot of EST, which I talked about in my post “Our Cancer Stories.” During my third course at Landmark, the Self Improvement Leadership Program, the leader asked us to identify all the communities we were a part of. Tearing a sheet of paper from my notebook, I scribbled a Venn diagram listing my overlapping communities: Theater, dance, Jewish, San Diego natives, writers, readers...

And then I hit upon one community that I was involuntarily a part of, the one I had sought to erase from my memory: cancer survivors. My project for the course became to reconnect with that community; my first step was volunteering at an upcoming Cancer Survivor Celebration at the University of Washington.

One enchanted afternoon

As I set tables and distributed programs in the large conference room, I noticed a man with a guitar sitting on the sidelines. We caught eyes, he shot me one of the most beautiful, soulful smiles I’d ever seen. Hmm, I thought, assuming he was a hired musician.

The program began, and the emcee announced that we’d be hearing a song by singer, songwriter, and brain-cancer survivor Steven Bishofsky. The man I had traded glances with strode onto the stage and sang his song “A Way,” which described his experience with brain cancer.

Listening to his words, something inside me gave way, like a long-locked door finally cracking open.

Later, as I munched on veggies at the appetizer table, Steven approached me.

“I liked your song,” I told him.

He looked into my eyes, gave that disarming smile again, and said, “Do you have a husband?”

I do now.

No marriage is perfect, and ours has its challenges. Day-to-day life with a man with cognitive disabilities can be daunting, and Steven navigates my moodiness and chronic anxiety on a regular basis. Even so, our life together is filled with laughter and joy, heightened by mutual empathy for each other’s past traumas. Our relationship isn’t about cancer. It’s about our home, our pets, our children and grandchildren, as well as travel and music and dance and theater and the outdoors. But cancer brought us together, and that shared experience is the underground root that stabilizes and nourishes our love for each other.

Tell me your love stories

That’s my love-after-chemo story, and now I’d like to hear yours. How has cancer impacted your past or present relationships? Whether you’re a current cancer patient, a long- or short-term survivor, or the loved one of someone whose life has been touched by cancer, I hope you’ll share your story in the comments. And if you enjoyed this post, I hope you’ll take a moment to share or restack it.

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Until next time, let’s open our hearts to the wonder of being Still Here.

We all have our own ways of coping with cancer-related stress. For some, it’s deep breathing or meditation. For others, it’s spending time outdoors. For my husband, Steven Bishofsky, whom I interviewed in my last post, it’s expressing emotions through music. I have several activities that bring me joy and solace, most of them related to creative self-expression. I dance and do Pilates, I write, I play with color using adult coloring books. But today I want to talk about the passion that got me through the darkest times and gave me a reason to keep going: my love for acting.

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Over the rainbow

From the time I was five, I aspired to be an actress. I loved the film “The Wizard of Oz” and longed to play Dorothy. Not understanding the difference between movie and live performances, I belted “Somewhere Over the Rainbow” on every street corner in hopes that the director might tap me to take over Judy Garland’s iconic role. In addition to “auditioning” for Dorothy, I regularly corralled the kids in my neighborhood and put on shows on our front porch, always casting myself as the star.

When I was diagnosed with Stage IV Hodgkin’s Lymphoma at age 15, I thought my dreams of becoming an actress, along with my very life, had come to an end. But a mere two months after I was released from the hospital, while I was going back and forth to the outpatient clinic for weekly chemo treatments, my wise mother enrolled me in a beginning acting class at San Diego Junior Theater. Although filled with trepidation about showing up to class in a wig, I reluctantly went anyway...and fell in love with theater all over again.

Why acting?

Why was acting so compelling for me? It afforded me the opportunity to step into someone else’s skin, at least for a short while. Reciting lines from a script also gave me a sense of control that was sorely missing in my life. Although I was in the dark about my own future, I could know without question what would happen at the end of the play.

I met some of my most treasured friends through theater. My friend Jennifer (Jennifer Silva Redmond of the delightful Substack publication Editor on Board) and I acted in several plays together at San Diego’s Old Globe Theater and became lifelong “sisters.” I remained close with another dear friend, Jim Hansen, whom I met in the Drama department at San Diego State University, until he died of AIDS in 1993. Being involved in theater gave me a place where I felt accepted at a time in my life marked by isolation from my peers. It gave me a place to belong.

It also provided me an outlet for expressing emotion. Playing a character who was despondent, terrified, or full of rage, I could experience and voice feelings that I’d deemed off limits in my real life. As I detailed in my post “Our Cancer Stories,” I had made an unconscious decision during my hospital stay to disconnect from my emotions. For a while, it seemed that acting might be the key to accessing them again.

Broken dreams

But that all fell apart during my year in the Professional Actor Training Program at S.U.N.Y. Purchase in upstate New York. This highly selective program accepted only 30 students per year out of the hundreds who auditioned, and my classmates included such future luminaries as Oscar winners Julianne Moore and Melissa Leo and Broadway star Mark Zeisler. Suddenly, I was a small, damaged fish in a huge pond, and I buckled under the pressure. “But what is the character feeling?” my acting teacher repeatedly asked me as I tried, desperately but unsuccessfully, to please her. I had cut myself off from my emotions so completely that they were beyond my reach.

I left the three-year program after one year and fled to Seattle, feeling like a broken failure. Although I did a bit of community theater in my new city, my interest in acting eventually fizzled out, and I became involved in other pursuits.

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Beginner’s mind

Now, forty-six years and thousands of hours of therapy and self-reflection later, I am gingerly allowing acting into my life again. I recently took improv classes at a local theater and loved them. I even took the riskier step of signing up for Acting 101, a beginning course in scene study. I’m trying to approach acting with a beginner’s mind. Now that I’m past the angst of trying to become a professional actress, I want to see whether the art form can still bring me joy. So far, so good.

What gets you through?

I plan to make “What Gets You Through?” a regular feature exploring how we get beyond trauma. I’m happy to talk about my various strategies for getting through times of stress, but I’d love to hear from you, too. What gets you through the hard stuff, cancer-related or otherwise? Is there an activity you once loved that you’ve recently picked up again or considered giving another try? Please tell us about it in the comments. And if you know someone who might benefit from this post, I encourage you to share.

Until next time, let’s revel in the fact that we’re Still Here.

In addition to all that, he’s a 32-year survivor of a grade 3 astrocytoma. In other words, a brain-cancer survivor.

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I sat down with Steven and got the whole story, in his own words.

Helen: What direction were you headed before you got brain cancer? Give us a snapshot of what your life was like just before you were diagnosed.

Steven: I was thirty-three, in graduate school, and just about to get my master’s degree in Communications. I was looking forward to a professional life, perhaps working as an analyst for the FTC.

Helen: What were your first warning signs that something wasn’t right?

Steven: It started with a bizarre dream in which I was lying on a bed of nails, and my brain cells were drifting up into the sky. I think this was my body telling me that my brain had been invaded by cancer. I began having a sense of déjà vu. For example, I’d watch a TV show and think I’d seen the scene before. One time, I was playing my electric guitar, and the music seemed to be coming out of the radio. This disturbed me so much that I called the nurse’s line at Northwest Hospital, and they called 9-1-1. A fire truck showed up at my door. The medics gave me oxygen and asked me lots of questions, including whether I’d ingested mushrooms of any kind. Of course I hadn’t.

Helen: What led to you finally being diagnosed with brain cancer?

Steven: I was traveling on my own in Switzerland, and as I spun a newspaper rack and recognized an English-language newspaper, I had an instant stabbing headache so incredibly painful that it made me feel like I was going to throw up, which I did when I got back to my hotel – so loudly, in fact, that the neighbors called the police to come see if I was on drugs. Little did I know that I was having a major seizure. I came back to the U.S. and went to my G.P., who thought it might be an inner-ear problem. He ordered a CAT scan, which showed an astrocytoma of 111 cubic centimeters (the size of a small hamster).

Helen: What was your reaction when you learned your diagnosis?

Steven: My first reaction was “I guess it’s my turn.” At the time my older son was five, and I had another on the way, so my second reaction was, “What about the boys?” It was like I was walking in a fog, and at any moment a precipice could open underneath my feet.

The doctor told me that if I didn’t have surgery, I’d be dead in three months. I responded, “Death by Christmas,” and he cringed. I agreed to the surgery. If I had known in the beginning that it was possible to survive a grade three astrocytoma it would have been less troubling. Since I didn’t know anyone who had survived, I had to just be that survivor.

Helen: What kind of treatment did you receive?

Steven: I had a complete resection of the tumor with a sonic scalpel that jiggled the cells apart. Then came radiation therapy followed by chemo. I chose BCNU, which was fat-soluble and could pass through the brain barrier. I never lost any hair and in fact had to start shaving daily for the first time. I came home from my chemo treatments hungry. During my last chemo treatment, I watched the liquid drugs flow down the tube as if I were watching the ball drop on New Year’s Eve.

Helen: What was it like to go from cancer patient to cancer survivor?

Steven: I started believing that I was cancer-free at the magical 5-year point. But cancer isn’t the kind of thing you can trust, so it wasn’t until about 15 years after completing treatment that I actually felt I’d survived it.

Helen: Thirty-two years later, how is your experience with cancer still impacting you, both physically and emotionally?

Steven: I have cognitive disabilities now, including short-term memory loss. I didn’t work for six years after treatment, and then only part time. I had to give up my idea of what my career would be. I feel like the man whom I was going to be died, and now I have a different future. For a very long time, I couldn’t even conceive of the concept of future.

Helen: What do you credit for helping you make it through the toughest times?

Steven: The need to be there for my sons. Being part of a brain-cancer survivors support group also helped me a lot, although joining the group was a brave thing to do because the friends I made would likely die.

I also credit a positive attitude and being able to voice my feelings through my songs. The lyrics of my song “A Way,” for example, really express my feelings about having brain cancer.

Helen: What one piece of advice would you like to share with other cancer survivors, patients, and caregivers?

Steven: Break things down into little steps and do them one at a time.

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I’ll leave you with one of Steven’s fantastic bird photos and a couple of invitations. First, if you have thoughts about this interview, or if you have an additional question for Steven, I invite you to share them in the comments.

Second, I hope this will be the first of many interviews with cancer survivors, patients, and caregivers. If you fit into one of those categories and would be willing to do an interview, please let me know in the comments or send me a direct message.

Until then, let’s be grateful that we’re Still Here.

I call them twins because they often, although not always, function in tandem.

The destructive power of denial and silence

We tend to think of denial and silence as destructive since they can lead to negative outcomes such as delay in seeking medical intervention, failure to gather the information we need about a diagnosis, reluctance to ask for support from family and friends, or refusal to plan for the future. Case in point, I ignored the lumps along my collarbone and at my groin for nearly a year before asking my parents to take me to a doctor. Because of my denial and reluctance to disclose the symptoms, by the time my Hodgkin’s Lymphoma was finally diagnosed, it had progressed to Stage IV.

If I had delayed any longer, I might not be writing this today.

And my decision to follow my parents’ lead and keep silent about the diagnosis, as if it were a shameful secret, led to my feeling isolated and alone in dealing with my illness.

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Denial and silence as protectors

Although giving denial and silence free reign can be problematic, like any coping mechanism, they exist to protect us: from fear, from the unknown, from the unfathomable reality of our own impending death. According to denial, if we don’t acknowledge concerning symptoms, they’re not really there. If we refuse to accept a diagnosis, it can’t be true. If we don’t recognize the fact that someday, we’ll inevitably die, it won’t happen. And if we don’t share our fears with others, they’ll have no reason to force us into action, and we won’t cause them pain or discomfort.

Basically, denial and silence serve to shield us from anything our minds believe we can’t handle. In times of extreme distress, that can be a good thing. In the same way that going into shock after a serious injury temporarily holds pain at bay, denial and silence function to give our nervous systems a “time out,” a chance to rest and integrate our new reality.

Moving beyond denial and silence

But what if we’re ready to move beyond denial and silence and embrace the truth of what is happening to our bodies? How can we get the sentinels to stand down and let us handle things on our own?

When I feel denial and/or silence wanting to take over, I employ a strategy I learned from one of my writing teachers. In writing, there’s something called an “inner critic,” a nagging voice that attempts to stop you from putting words on the page through a stream of negative internal talk. My teacher instructed us, first, to personify the inner critic, to give it a name and an image. I don’t remember now what name I chose for my writing nemesis, but I still have a picture I drew of her as an old schoolmarm wagging her finger at me.

Next, my teacher had us thank our inner critic for doing its job of protecting us from putting anything less than our best work into the world.

Finally, she told us to assure our inner critic that it could take a well-deserved rest, that we could handle things from here.

I’ve found that this same strategy can work with denial and silence. Instead of beating ourselves up for hiding behind them, we can acknowledge that they were helpful and even appropriate in times of extreme stress. We can thank them for their protection. And we can let them know that, from here on, we’ve got this.

These days, I’ve probably let the pendulum swing too far in the other direction. Now I contact my doctor immediately if anything seems the slightest bit off. I imagine she rolls her eyes when she sees my name on her schedule, but that’s okay. Speaking up about concerning symptoms, no matter how minor, is my way of proving to myself that denial no longer holds me in its sway.

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What about you?

What has been your experience with denial and silence? Have there been times in your cancer journey when they were appropriate and needed? Have they had any negative impacts on your life? Have you found a way to set them aside and embrace the truth?

Please share in the comments! The more we talk openly about denial and silence, as well as the other elements of our cancer and post-cancer experiences, the more we shine light in the dark places.

Denial and silence hate that.

It was 1998, and my life had gone into freefall. In the previous eight years, I had gone through a divorce, weathered a painful breakup, lost my best friend to AIDS, and given up on my dream of becoming a professional actress. Desperate to get back on a positive track, I enrolled in the Landmark Forum, a three-day self-development program that evolved from the more intense EST seminars created by Werner Erhard back in the 1970s. While EST was infamous for being confrontational, with belittling instructors and minimal bathroom breaks, the Forum featured pedantic but insightful lectures, illuminating dialogues, and unrestricted access to the restrooms.

The highlight of the seminar, which took place on a Saturday night, was an exercise designed to dismantle the stories that limited us to make room for new possibilities in our lives. When the instructor told us to share a story from our past, one that continued to impact us, I knew I’d be telling my cancer story.

It went something like this:

My Cancer Story

One day in seventh grade, I blacked out while playing basketball in gym class. This was the first in a series of increasingly alarming symptoms, which included daily nausea and vomiting, weight loss, and swollen lymph nodes along my calves and at my groin and collarbone. I hid these symptoms from my parents and friends, hoping they’d go away. But finally, a year later, I nearly fainted during a chorus rehearsal. At the choral director’s urging, I reluctantly went to the school nurse’s office. The nurse took one look at my underweight body, pale complexion, and lump-riddled calves and called my mom and demanded that she take me to a doctor. That very afternoon, after a consultation with my pediatrician, I was checked into San Diego’s University Hospital.

During my first few days in the hospital, I underwent a litany of tests including a gallium scan, a lymph node biopsy, and a bone marrow aspiration. After an invasive laparotomy (exploratory abdominal surgery), I finally got my diagnosis: Hodgkin’s Lymphoma, Stage IVB. The diagnosis didn’t worry me much, because, at fifteen, I had no idea what Hodgkin’s Lymphoma was. It wasn’t until I returned home and looked it up in my World Book encyclopedia that I realized I had cancer.

Three years of brutal chemo treatment followed. I missed school every Friday so I could go to the outpatient oncology clinic and receive my infusion, after which I would spend the rest of the day in bed, vomiting my guts out. Gradually chemo was reduced to every other week and then to once a month. And then finally came the day, at age eighteen, when the doctor announced that I had graduated from chemo and was in complete remission. I’ve been cancer free ever since.

I must have told my story fifty times that night, to fifty different listeners. I also heard fifty-plus stories from others seminar attendees detailing traumas ranging from extreme poverty to heartbreaking loss to sexual abuse. The idea behind the exercise was to tell your story so many times that it became just that: a story. A simple reporting of facts, devoid of emotion. According to our instructor, if we told our story enough times, we’d simply get tired of it, and it would lose its power over us, leaving us free to get on with the rest of our lives.

Unfortunately, it didn’t work that way for me. I’m not disparaging the exercise itself; I saw sullen, shutdown people singing and doing cartwheels in the halls after freeing themselves of their stories. But I had spent so many years distancing myself from my cancer experience and the surrounding emotions that recounting my teenage trauma in this disconnected fashion was nothing new.

Emotional Disconnect

Sometime during that childhood hospital stay, I had made the unconscious decision to turn off my feelings. Don’t feel, don’t care became my mantra whenever fear or anxiety threatened to knock me off my precarious emotional balance. In some ways this strategy served me well and helped me get through a challenging situation relatively unscathed. But it’s hard to live your best life that way, and as I entered my young adulthood, I began to feel the impact of this emotional disconnect in the form of problematic relationships, depression, and an impaired ability to access my emotions, which ultimately led to the decision to give up my budding acting career.

Into the Woods

What I needed to free myself of the past, I discovered, was the opposite of what the Landmark exercise had required. Instead of disconnecting from my memories, I needed to lean into them. As a dancer, I knew that my memories resided in my body, so I turned to my senses to access them.

The antiseptic smell of my hospital room.

The sensation of a needle pricking my stubborn vein.

The static of the intercom on the ward jolting me out of sleep.

The metallic taste of the chemo meds.

I found that by focusing on what I had seen, heard, tasted, touched, and smelled, I could recover flashes of the trauma I had experienced so many years ago, complete with the feelings that accompanied them.

Why would I do this? you may ask. I went through the experience once; why would I want to put myself through it again? I believe that getting beyond trauma is like wandering in a spooky fairytale forest. You need to go through it to get to the other side.

Sometimes just stating the facts of your cancer history is all that’s called for. But reliving my cancer experience in small, manageable doses has not only enabled me to feel my emotions again but has allowed me to reclaim my past and embrace my identity as a cancer survivor. It has allowed me to feel viscerally, in my muscles and guts and bones, how close I was to not making it and has filled me with intense gratitude for the fact that I’m still here.

My life now is far from a fairytale, but my past trauma no longer waits, like a shadowy figure in an enchanted forest, to accost me at every turn. By reconnecting with my memories and emotions through my senses, I’ve taken back my power.

What’s your cancer story?

I invite you to use the comments to share your cancer story. If you prefer to give us the just-the-facts-ma’am version, that’s perfectly fine. Or, if it feels right, share a few snippets of sense memory: the sights, sounds, tastes, sensations or smells that take you back to that challenging time.

Welcome! I’m so glad you found your way here. My name is Helen Landalf. I’m an author, a Pilates instructor, a dancer, a wife, a stepmom, a cat lover…

…and a cancer survivor.

Owning up to that last bit hasn’t always come easy. When I completed my final treatment for Stage IV Hodgkin’s Lymphoma at age 18, I vowed to put the whole cancer experience behind me and forget it ever happened. But, as many of you probably know, no matter how far behind cancer is in the rearview mirror, it still follows you. The harder I tried to deny my past, the more it impacted my life through issues like failed relationships, depression and anxiety, and an inability to express - or even feel - my emotions.

It wasn’t until I decided to embrace my identity as a cancer survivor that things began to turn around. Now at 68 (and 53 years cancer free!), I finally have a life I love that includes fulfilling work, opportunities for creative expression, and a joyful, loving relationship with a husband who is himself a cancer survivor.

Sharing my insights in this newsletter will be the next phase of this ongoing process of integrating my past into my present and proudly carrying it with me into the future.

Who are you?

But I don’t want “Still Here” to be all about me. Whether you’re a long-term cancer survivor, newly out of treatment, just starting your cancer journey, or supporting a loved one who has experienced cancer, I want this to be a landing place for you. A place where your stories matter, where your voice is valued and heard. In other words, a community.

What can you expect?

As a subscriber, you can expect this newsletter in your inbox twice a month. In each issue, I’ll explore topics such as:

• Our cancer stories

• Denial and silence

• Is there love after chemo?

• Survivor’s guilt

• Gratitude…and more

In addition to essay-style posts, content may include interviews with cancer survivors, writing prompts, and creative shares. The more interactive the better, please use the comments to let me know your ideas and get acquainted with one another.

A final word

The more full and diverse our community, the better we can support each other in navigating life after cancer. So please consider sharing this newsletter with anyone you think might be interested in subscribing. And once again, welcome!

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