As my memoir took shape, I realized it needed to read like a story with a clear beginning, middle, and end. I couldn't open with the most dramatic and terrifying moments. Instead, I needed to build a "runway" — what storytellers call the First Act. This helps build the emotional climax that comes later by establishing my world, naming my critical flaws, and planting the seeds of what's to come. But the reader can only understand my emotional transformation if they first know who I was before the crisis.

Finding the critical flaws that set me up for the intense, anticipatory grief that followed my husband’s diagnosis of male breast cancer was not only self-therapy, but it provides the arc of my story.

If you are writing a survival memoir that incorporates illness, caregiving, grief, or crisis of any kind, I hope this series helps you find the structure to get you over the finish line.

This piece will be make more sense, if you have read my two recent posts:
1. Writing Like a Movie. https://www.afterhesaidcancer.com/p/writing-like-a-movie?r=1acedj
2. Memoir Structure: the Opening Image. https://www.afterhesaidcancer.com/p/memoir-structure-the-opening-image?r=1acedj

I have placed this third piece in the series behind a paywall, because it dissects the theme of my memoir and feels even more personal than my actual life story.
Spoiler Alert: The theme comes from a scene from the operating room.

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I wanted to tell my story, partly for me, and partly to show the world that men with breast cancer exist. The struggles aren’t truly the same as those for women with breast cancer. There’s more stigma. No warm embrace from the world of pink ribbons. Instead, a band of brothers that is difficult to find and hold on to.

To find a home for my story, I needed to give it a framework that an audience can recognize and relate to. Now, I want to share how I gave my memoir a shape and narrative that screenwriters and novelists have used for decades.

Somehow, this feels even more personal than my memoir itself. Over the next month, I will delve deep into the structure of my book, but most of it will be behind the paywall.

I’m sharing this breakdown for two reasons. First, understanding the structure of your own story can be one of the most clarifying things you do as a writer. Second, if you are writing a survival memoir (like me) about illness, caregiving, grief, or crisis, then this structure might help you…

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She said the fictional author had structured their story using a “Save the Cat” plot.

What on Earth is Save the Cat?

I had never heard the term. But the agent said it almost casually, the way you’d mention something everyone in the room already knew. Save the Cat, she explained, is fairly standard in the industry — a template for tightly plotted stories.

I went down the rabbit hole immediately. And what I found changed how I thought about the memoir’s structure, which I was struggling to pin down.

From Hollywood to the Bookshelf

Blake Snyder was a Hollywood screenwriter who published Save the Cat!: The Last Book on Screenwriting You’ll Ever Need in 2005. The title comes from one of his core pieces of advice: early in your story, let your hero do something likable. It can be something as simple as saving a cat, so the audience is rooting for the hero before the real trouble begins.

The heart of Snyder’s system is a precise 15-beat structure mapped onto a standard 110-page screenplay, with each beat landing on a specific page. The result is a story that never stalls, never meanders, and in which every chapter moves it forward. In a nutshell, Save the Cat is story efficiency.

The book became enormously influential in Hollywood. Producers and development executives began speaking its language. It wasn’t just a writing tool; it became an industry standard.

After Snyder’s death in 2009, the framework found a second life. In 2018, Jessica Brody translated it for fiction writers in Save the Cat! Writes a Novel. I can’t recommend it highly enough for anyone trying to plot a tight story. Brody’s insight was that the same emotional architecture underpinning great films also underpins great novels. She mapped the beats onto a roughly 300-page book, giving them more room to breathe, and leaned into the deeper interior journey that prose allows in ways a screenplay simply can’t.

Ten Genres, One Story Type

Save the Cat doesn’t offer a one-size-fits-all template. Instead, Snyder organized all stories into ten archetypal genres not by subject matter, but by the type of problem at the story’s core. Here are the ten, with some recent films to bring them to life:

• Monster in the House — a contained threat the characters can’t escape (Barbarian, Nope)

• Golden Fleece — a quest or road story that changes the traveler (The Banshees of Inisherin, Nomadland)

• Out of the Bottle — a wish granted, with consequences (Everything Everywhere All at Once)

• Dude with a Problem — an ordinary person thrust into an extraordinary crisis (No Time to Die, All Quiet on the Western Front)

• Rites of Passage — a life transition the hero must stop fighting and accept (The Whale, Aftersun)

• Buddy Love — two incomplete people who need each other to become whole (CODA, Maestro)

• Whydunit — not who did it, but why, and why it was allowed (She Said, Oppenheimer)

• The Fool Triumphant — an underdog who exposes the establishment as the real fool (The Holdovers, American Fiction)

• Institutionalized — an individual vs. a suffocating collective (The Zone of Interest, Women Talking)

• Superhero — an extraordinary person whose gift is also their burden (King Richard, The Brutalist)

As Snyder was careful to note, every story belongs primarily to one genre. The others can inform subplots and the emotional secondary “B” story, but committing to one is what gives a narrative its spine.

My Genre: Dude with a Problem

When I began mapping my memoir onto this framework, one genre kept rising to the surface: Dude with a Problem.

The definition of this genre is that an ordinary person is thrown into an extraordinary situation they never chose and are not equipped to handle. That is, almost word for word, what it felt like to have your husband diagnosed with cancer.

Here’s what I’ve come to understand about my particular version of that story: my problem isn’t only that I might lose the love of my life. It’s that I am a type-A physician-scientist, someone who has spent a career solving problems, controlling outcomes, and understanding biology at its most fundamental level. And cancer doesn’t care about any of that. How this disease will evolve in my husband is not something I can control, predict, or fix. The real crisis at the center of my memoir isn’t the diagnosis. It’s the relinquishing and surrendering of control.

Why I Wanted a Story That Reads Like a Movie

My dream for retirement was to write commercial medical thrillers with the potential for film adaptation. Starting with a plot that feels like a movie felt like the right foundation.

The Save the Cat framework didn’t write my memoir. But when I was spinning my wheels trying to organize the chapters and figure out what belonged and what didn’t, what was scene and what was backstory — it gave me a structure I could trust. It helped me understand that my true story needed to function as a narrative, with momentum, stakes, and shape.

Next week, I’ll walk you through the 15 beats of the Blake Snyder Beat Sheet and show you exactly how I mapped them onto After He Said Cancer.

Have you ever used a structural framework to organize a personal story? I’d love to hear about it in the comments.

If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. The adjacent Op-Ed about male breast cancer to help bring this disease out of the shadows. https://www.afterhesaidcancer.com/p/after-the-seattle-times-op-ed

3. Lights Out. A lighter story about my husband’s parenting style. https://www.afterhesaidcancer.com/p/lights-out

4. The Day He Nearly Died. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

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Six months ago, I went quiet.

No posts, no updates. Just me, a manuscript, and a deep focus that doesn’t leave much room for anything else. If you’ve been wondering where I went, here’s the honest answer. I’ve been finishing my memoir, and I am ready to tell you about it.

After five years, After He Said Cancer is finally complete.

Well, it’s complete in the sense that several readers say that they enjoyed it, and my developmental editor had only minor comments. (In the next few weeks, I will explain more about this early process of editing and revision.)

It feels surreal to call the manuscript “complete”, and find out if anyone other than me thinks it has commercial potential. What started as a way to make sense of my husband Chris’s cancer diagnosis has become a full-length book that I’m now querying to literary agents, with the hope of landing a traditional publishing deal with a major house.

I had no idea what I was walking into when I started this project five years ago.

The querying process is its own world. The initial process is exhilarating when one hits “send”, and then there is a long process of waiting, with an inevitable humbling phase where scores of agents are simply not interested in the manuscript. In my life as a scientist, I am used to the constant rejection by editors for scientific papers, so this part is not new.

My skin is pretty thick, and I am more than ready for the mountain of rejection that is certainly coming my way.

I’ve kept alive a dream that I’ve had for a long time, which was writing stories that might find their way to film, a la Stephen King. But cancer has a way of rearranging your priorities, and it rearranged mine. The medical thriller and detective projects I’d planned to write in retirement were nudged aside, so I could write the story that was literally bursting from within. This story demanded to be written first.

Over the next six weeks, I want to bring you inside the process.

What does it look like to write a memoir with commercial publication in mind? What goes into querying agents? What does a writer have to think about when film adaptation is part of the vision? I’ve lived all of it recently, and I want to share it with you – my fellow memoirists, readers, family, friends, and anyone who’s ever wondered what happens after you get the idea to write the book.

One housekeeping note: with Substack’s recent algorithm changes, follower counts are no longer visible on the platform. If you want to make sure you don’t miss what’s coming, subscribing is free, If this work has meant something to you, a paid subscription is always deeply appreciated. (I am also unpausing paid subscriptions.)

It’s spring. New beginnings feel right.

I’m glad to be back. Thanks for your patience.

If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Extremes. The extremes of poverty give me perspective on my grief.

https://www.afterhesaidcancer.com/p/extremes

3. That Ribbon. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

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I wasn’t expecting what happened next.

My inbox at work began filling up with women writing to me, whose husbands, fathers and sons had been diagnosed with male breast cancer. Many had died from the disease.

The first email I received was from Vicki Wolf Singer, a woman who was diagnosed with breast cancer at the age of 37. After genetic testing, she discovered that she was a genetic carrier of the BRCA2 mutation, which is one of the more common genetic mutations that puts men at risk for breast cancer.

After a few years, her brother noticed a change in the appearance of his nipple. After seeing a doctor, he was also diagnosed with male breast cancer. Collectively, she and her brother have 5 sons who are at risk.

Similar to our experience, they discovered that everything about the breast cancer experience is geared towards women, including the messaging, research, and efforts toward prevention. When they couldn’t find any information about male breast cancer, they started their own foundation: HIS Breast Cancer Awareness.

The siblings were featured on Good Morning America, which is an incredible segment. I encourage you to watch it. The part that shocked me was that both of the show hosts happened to have brothers diagnosed with male breast cancer.

I believe in my heart that male breast cancer is underdiagnosed and undercounted.

If you are interested in hearing more about HIS Breast Cancer Awareness, and what it is like for their family to navigate life with a genetic mutation, I encourage you to check out their videos:

1.

2. https://www.youtube.com/tch?v=AubZYYmu04M

I am grateful for this new connection, and how the work on my book can interface with the many good people that are struggling to raise awareness for male breast cancer. I also want to thank Barbara Clements and UW Medicine, who have consistently championed promoted my writing whether it be scientific manuscripts or Op-Eds about male breast cancer.

UW Medicine posted about my Op-Ed on their LinkedIn page, which has 45,000+ followers. From their post:

“In her recent op-ed in The Seattle Times, OB-GYN Dr. Kristina Adams Waldorf describes rising cancer rates in people under 50, including breast cancer.

"The reason for this increase isn’t known, but it has been speculated to be caused by rising rates of obesity and exposure to chemicals and cancer-causing agents," says Dr. Waldorf.

She notes that the American Cancer Society recommends men at “high risk” for male breast cancer should speak to their doctors about whether and how they should be screened to detect an early cancer, but many might not recognize themselves as being at a higher risk.

Dr. Waldorf says that men should watch out for a small mass that is often under the nipple. Any lump in a man’s breast should be checked by a doctor and followed up with an imaging test, such as a mammogram or ultrasound. If the nipple has changed in appearance and become inverted, this is also a warning sign.”

Family life has been busy recently, but I will get back to more book writing in September, and perhaps another Op-Ed in October for Breast Cancer Awareness Month. Yes, I will!

Hope you are well and enjoying the last month of summer,

Kristina

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On Monday, July 27^th, the Seattle Times will publish an Op-Ed that I wrote about the hidden cases of male breast cancer.

I am asking for your support to “like” the article, write comments about something you found interesting, share a personal story, or thank the Times for publishing the piece. If you have been touched by male breast cancer, please talk about this in the comments. Maybe you have a strong family history of breast cancer in the women in your family and are now worried about the same cancer affecting men in your family. If you are willing to take out a digital subscription on the same page as the editorial, this will be tracked and help engagement.

If we can demonstrate support for this Op-Ed, published in the Seattle Times on a Monday, then it is more likely that the next article I write on male breast cancer will be placed in a newspaper with an even higher readership. This is an excellent opportunity to rally the support from communities of cancer survivors, the widows/widowers of cancer patients, and families connected with male breast cancer or any cancer.

Without giving away too much about the Op-Ed, I talk about my connection to female breast cancer as an Ob/GYN and the shock when my husband was diagnosed. I discuss the concerning rise in cancer rates among young people and Gen X, which has been referred to as Gen “C” (for cancer).

The world isn’t getting any cleaner or less polluted. Male breast cancer is one of many cancers that have been linked to toxic chemicals and air pollutants. It’s hard to ignore odd clusters of male breast cancer that have popped up in small geographic areas or in certain professions. I can only imagine the additional number of female breast cancers that are linked to the same exposures to toxic water, air, and our daily environment.

Another risk factor for male breast cancer is being overweight, which is a problem for nearly half of the men and women in the United States. As we gain weight, our breast tissue grows. Current health guidelines advise that men who notice growth of the breast tissue in their chest should speak to a doctor and consider getting screened.

Do you know any men who are aware of this recommendation? Or, do you know any men exposed to air pollution or toxins associated with military service or their profession (e.g., firefighters) who realize that they are at greater risk for male breast cancer? Would they advocate for themselves to get a screening mammogram?

I don’t think so, and that’s the point.

Male breast cancer is something that we can screen for, detect at an early stage, and treat before it becomes widespread. My husband’s cancer was a hair's breadth away from being metastatic. I will never stop worrying about his risk for cancer recurrence.

I will send another post on Monday with a link to the Op-Ed, and ask for your help in visiting the link, adding a like, making a comment, and subscribing to the digital Seattle Times for a month from the same page as the Op-Ed.

Please share this with anyone you think might support this effort. Engagement with this Op-Ed will help lift this cancer into the public eye, at least for a short time.

As always, I thank you for your encouragement and support.

Kristina

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I could never be a Plotter.

Without a doubt, I am a Pantser. A scene begins to take shape in my mind. Then, the momentum inside me builds and builds, until I have no choice but to let it out onto the page. Crafting the essay is almost a relief in the end, as the creative work takes shape and comes to life.

The writing world is beautiful to a Pantser, because there are no rules. You can write about whatever you want as long as your pen (or computer keyboard) is free to follow your heart. The Pantser needs freedom.

Until it is time to plot out the book. Suddenly, the Pantser’s world comes crashing down. There are plot holes, themes only partially developed, and no opening image. The protagonist isn’t sufficiently flawed, and so on.

This is where I am now.

Although I hoped that I was nearing the end of my memoir, it is more likely that I am only halfway there. The beginning is incompletely developed and doesn’t move the plot forward sufficiently. I need to add more tension and give the reader a reason to root for the hero (me). In short, my flaws need to be more visible in the first part of the book so that the reader can experience my transformation.

The Pantser must now become a Plotter.

Here is a photo showing the plot line of my memoir taken from the famous book on writing novels called “Save the Cat”. An interview with a book agent that I recently saw discussed this book as an industry standard for evaluating plot lines.

Now that I have adopted a structure, the realization that I haven't written many of the book’s chapters is a bit daunting. The good news is that I have plenty of flaws to populate the first part of my book, which sets the reader up for the transformation that needs to take place within me. I am human and far from perfect. For the memoirist, this is rich material!

Time for me to become a Plotter, at least for the home stretch of completing a first draft. And, yes, I need to ‘save a cat’ in the beginning.

Please share your thoughts with me in a comment. It would really help encourage me!

If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Extremes. The extremes of poverty give me perspective on my grief.

   https://www.afterhesaidcancer.com/p/extremes

3. That Ribbon. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

Subscribe now

Leave a comment

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Kristina Adams Waldorf: Today, I have the pleasure of speaking with Jenny Peterson, who has Stage 4 cancer, and is kind enough to share her journey with us. Would you please tell us about when you were first diagnosed with cancer?

Jenny: So, I have had cancer three times. My first cancer diagnosis was malignant melanoma in my thirties, and that was a one-and-done treatment with surgery, so it didn't really disrupt my life too much. The second cancer diagnosis was breast cancer stage 2, and that was 12 years ago. I went through all the standard treatments: two surgeries, chemotherapy, radiation, and then did about 2 years of hormone therapy. The side effects were difficult for me, and I stopped the hormone therapy. My eyes were wide open when I discontinued that part of my treatment. I had to weigh the quality of my life against the length of my days remaining.

So, I made the decision to stop the hormone therapy very confidently. And then in June of 2024, I began having back pain. Initially, I thought it was a pulled muscle and consulted a primary care doctor, an orthopedic specialist, and a pain management specialist. Nobody caught that I had active tumors in my spine. About 2 days after my MRI, where they said my spine was clear, my back broke.

Kristina Adams Waldorf: I am so sorry this happened. I wish that they had caught this sooner.

Jenny: Me too. It was the most excruciating pain I've ever been in in my entire life, and I was even trying to go to physical therapy. By the time we knew that something was dreadfully wrong, my entire body collapsed. At the same time, I needed emergency surgery for my spine, and I was told that my cancer had come back.

So, since June of last year, I've been recovering from back surgery, which has a 12 to 18-month recovery timeframe. And then, a month after surgery, I began cancer treatment. It’s been a bit of a double whammy.

Kristina Adams Waldorf: This is heartbreaking. You have gone through an emotionally and physically difficult year, and yet your mood on Substack seems upbeat.

Jenny: I am a naturally positive person, but I had a tough time after the diagnosis and my back surgery. I did feel that it was completely natural to feel despair after my diagnosis, and so I didn’t rush to medicate that away.

Kristina Adams Waldorf: What has helped you during this time?

Jenny: I felt like it was important for me to name and really embrace the feelings that I was having head-on. I tried not to avoid or minimize the feelings, but also not to get stuck in them, so that it was difficult to move forward.

For many patients with a stage 4 breast cancer diagnosis, life expectancy is 2 to 3 years. My survival will probably be better than that because I have a very slow-growing type of cancer. But it’s still difficult to hear that you have Stage 4 incurable cancer. It brings you face-to-face with your mortality.

Kristina Adams Waldorf: How do you come to terms with this diagnosis?

Jenny: Feeling frozen and terrified is not how I want to live. That’s not appealing to me.

Kristina Adams Waldorf: Still, I am impressed with your courage in facing these emotions and making the conscious decision to work through them, to feel them, and address them. I think many people tend to sweep things under the rug.

Jenny: We all have times when the truth or our reality in that moment is too much to process. And I think the healthy response is not to force it. Everyone processes their emotions at their own pace and in their own way. This cancer diagnosis only has as much meaning as we want to attribute to it. I can give my cancer a very scary and bad meaning, or I can give it a more balanced meaning that serves me and helps me to keep moving forward. Some days I'm more successful at this than others, but when I am struggling, I give myself a break.

Kristina Adams Waldorf: What have you learned about yourself in this journey?

Jenny: Death is not anything to fear, and that's something that I really feared before. I know it sounds a little nerdy, but I did some research on near-death experiences. And I read books and watched documentaries on Netflix and just kind of submersed myself in it. Death is not something, I fear, anymore. I can't tell you how amazing it feels to remove that fear from my life because we're all going to experience death.

Kristina Adams Waldorf: I'm so impressed by your journey and grateful that I got a chance to speak with you.

Jenny: Thank you.

If you are interested in reading Jenny Peterson’s Substack, here are a few links:

https://open.substack.com/pub/jennynybropeterson

Here are some of Jenny’s favorite posts:

1. These Days.

2. I’m Not a Positive Person.

3. The Glimmers.

If you would like to read more posts from Kristina (After He Said Cancer), here are a few:

1. How It Began. This story is the origin of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Dandelions in the Lawn. https://open.substack.com/pub/tigerinmykitchen/p/dandelions-in-the-lawn?r=1acedj&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

3. The Day He Proposed. https://www.afterhesaidcancer.com/p/along-the-salish-sea?r=1acedj

4. Surrender. https://www.afterhesaidcancer.com/p/surrender?r=1acedj

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I am nearing completion of my first draft of the memoir, which currently stands at 70,000 words. While this feels like an achievement (and it is!), there is still a long way to go in the publication process.

The road to traditional publication with one of the “Big Five” publishers is elusive and fraught with writers who were run over and left for dead along the side of the road. Smaller presses, hybrid publishing, and self-publishing are also options, but I would like to try to publish with a traditional publisher. This means I will need to query and secure an agent, write a book proposal, develop a larger platform, and establish writing credentials to make my book appear like a good bet for potential sales.

Over the next 4-6 months, I will focus on submitting stand-alone, unpublished essays to literary journals, as publication can help establish my writing credentials for a potential book agent. This means that I can’t publish these essays on Substack (sniffle, sniffle, dab a tear). I kick-started the process by submitting my first essay to 7 literary journals this week. While I am accustomed to submitting to scientific journals with names like Nature and Journal of Immunology, now I am submitting to literary journals with more colorful names like Hippocampus, Swamp Pink, Exposed Bone, and The Offing. These journals have response times of 4 weeks to 8 months. While I wait, I will write a few more essays to submit to literary journals to keep the submission merry-go-round turning.

It will also help my writing credentials and the prospect of publication to publish an Op-Ed or essay related to the topic of my book, male breast cancer. There is potential here to raise awareness for a disease that is thought by the public only to affect women, and seems to be rising in number. Risk factors include a family history of breast cancer or exposure to chemicals or smoke from burn pits used near military bases. Firefighters and car mechanics are also at risk. When I hear of wildfires in the West, I think of firefighters and their exposure to toxic chemicals in smoke. November is Men's Health Awareness Month, a time to raise awareness about cancers that primarily affect men. I plan to pitch a few newspapers and magazines to place an Op-Ed about male breast cancer.

I recently completed a 10-week memoir writing course through the University of Washington, taught by Ronit Plank. It was an incredible course, and I learned a great deal about the genre. Ronit also has a Substack called “Let’s Talk Memoir”, which I highly recommend! I am following up this course with a few others through Hugo House. One course is on book contracts – not that I have one but let the girl dream! Another is an 8-week course on flash fiction, which describes a genre of short and powerful essays. Improving my skill in developing conflict, tension, and suspense in less than 1,500 words is the goal!

With these activities in mind, I’ll be pausing paid subscriptions for the next six months, as my posts will be less frequent while I focus more time on the activities mentioned above. I will continue to use the Substack platform to update everyone on my progress toward querying agents, refining my craft, and posting occasional memoir essays. Please wish me luck for the last push before shopping the memoir to book agents in January of 2026.

I really appreciate your support, likes (hearts), and supportive comments!

Best,

Kristina

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Her son, Matthew Bowman, died of male breast cancer at the age of 49. He was a nurse and a pillar of his community, a lieutenant for his town’s volunteer fire department. Many women in Pat’s family had breast cancer, but the genetic testing hadn’t identified a high-risk gene. It hadn’t occurred to them to have male members of their family screened for breast cancer, much less to have them screened in their forties.

Our phone call was long overdue. We had a lot in common as two women who loved men diagnosed with male breast cancer. She was intent on making a difference to help men avoid an untimely death from the disease. I was focused on helping my husband stay alive long enough for our children to graduate from high school. Neither she nor I had a choice as to whether we wanted male breast cancer to enter our lives and how to end the stigma that kept the disease in the shadows.

No one wanted to talk about it. Not the men with breast cancer having their first mammogram to check a breast lump. Not even the caregivers who were too busy taking care of their sons, husbands, or partners to think about advocacy. At first, not even I wanted to talk about it, and when I told people, the words “male breast cancer” came out in a whisper. There is something that felt wrong about divulging that my husband had a woman’s cancer.

But it wasn’t a woman’s cancer. It was simply cancer. I knew this so deeply, it could have leached out of my bones, and even I had difficulty saying it aloud. I should be able to shout it from the street corner. But I couldn’t or wouldn’t. Something held me back. I was thankful that Matt had been a strong advocate when he was alive, and Pat had taken up the torch. An uncommon disease needed strong voices, and my own felt weak.

Our conversation turned to the next step and how we might work together. I was fixated on determining which treatments might work better in men than women. This might help my husband, who would be at high risk for a cancer recurrence after chemotherapy and radiation.

“I am going to be sick if I hear one more time that they don’t know which breast cancer treatments will work the best in men, so they are going to use the regimens tested in women,” I said, feeling my stomach churning. Every time I heard these words, my intestines began to revolt, and a wave of nausea came over me.

“Sure, we could spend our time figuring out whether men might benefit from a different treatment than women, but more lives could be saved if we get more men screened for breast cancer,” she replied quickly. “This is where we need to focus.” Pat had spent more time than I thinking about what it would take to make a dent in this disease.

She was right. Screening was the right thing to do to catch more cases in the early stages. Once breast cancer spreads beyond the breast and the lymph nodes, the chance that a man would live more than 5 years is only 20%. Why men’s survival isn’t as good as women’s, even when matched for the same cancer stage, wasn’t clear.

Before his death, Matt appeared on television and talked with journalists to spread the message that men could get breast cancer. I found an article featuring a quote from him.

“I believe education is the key,” he said. “This disease is treatable, if it is not found too late. Because of the lack of education out there, for every effort that is given to breast cancer in women, we need to spend four times that on male breast cancer to catch up with the rest of the breast cancer world.”

In recent years, the U.S. National Institutes of Health allocated more than 800 million dollars to breast cancer research out of a total of 8 billion dollars for cancer research. If we allocated only 1% of the breast cancer budget to the disease in men, this could fund two large grants to improve men’s survival. If nothing else, this approach seemed fair. One percent of breast cancer diagnoses were in men. Why shouldn’t 1% of the U.S. research dollars in this area benefit men’s health?

Matt lived for four years after his diagnosis. My heart ached for Pat, me, and my daughters. My physician brain kept playing out scenarios of how the cancer might progress, or go away, only to return within a year. I had seen so many patients in these situations that it wasn’t hard to overlay my husband’s image onto a memory of someone who died too young. More than anything, I wanted more time with him. When we were in our 80s, I wanted to hold hands with him and think back to decades of life together.

“The sad thing is that Matt had so many dreams that would never be fulfilled,” she said wistfully.

A heavy silence came over us that wasn’t broken for a long time.

If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Extremes. The extremes of poverty give me perspective on my grief.

   https://www.afterhesaidcancer.com/p/extremes

3. That Ribbon. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

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I would like to explain a few elements in the story before we get into the interview for people unfamiliar with the many types of breast cancer. Emma talks about her triple-positive breast cancer, which is a type of breast cancer that makes three specific proteins that decorate the surface of the cancer cells: estrogen receptors, progesterone receptors, and human epidermal growth factor receptor 2 (HER2). This kind of breast cancer accounts for approximately 10-20% of all breast cancers. It is more common in women under the age of 50.

Her friend, Emily, had an aggressive triple-negative breast cancer, meaning that it lacked these three proteins on the cell surface. These cancer cells don't rely on these proteins for growth, making them more dangerous because they are less responsive to hormone-based therapies and some other targeted treatments. This type of breast represents about 10-20% of all breast cancers.

BRCA (BReast Cancer genes) mutations are genetic changes in the BRCA1 and BRCA2 genes, which play a role in repairing DNA damage and preventing cancer. Women with BRCA mutations have a 45-85% lifetime risk of developing breast cancer, compared to 12% in the general population.

[Kristina Adams Waldorf] Welcome, Emma! I am so happy that you are willing to share your journey.

[Emma Vivian] Thank you. I am excited to be here. I was diagnosed with triple-positive breast cancer at the end of 2018 when I was 29. I found the lump during a self-breast exam, and after consulting Dr. Google, I waited a month to see if the situation would resolve on its own. Within a few weeks, the lump had doubled in size. Being a Brit with limited knowledge of the American medical system, I went to urgent care where, thankfully, the doctor took me seriously and referred me for an ultrasound and biopsy. I was diagnosed shortly after.

What was shocking was that my childhood best friend, Emily, had been diagnosed with triple-negative breast cancer less than a year before me. Emily was diagnosed at 28, and when I was diagnosed, she was in remission. Not long after my bilateral mastectomy, I learned I would need more chemotherapy. Shortly after, I received the devastating news that Emily's cancer had metastasized, and she passed away within a couple of months. Because she was in England and I was receiving chemotherapy in Los Angeles, I couldn't say goodbye.

[Kristina Adams Waldorf] I'm deeply sorry to hear that. I have no words to express my sympathy for what you and Emily went through. Was there any indication that there might be a genetic factor at work in the development of your cancers at a young age?

[Emma Vivian] Emily had the BRCA mutation and a strong family history of breast cancer, but still, her diagnosis at 28 seemed strikingly young. I tested negative for genetic markers, but I have an aunt who was diagnosed at 40, and my oncologist suspects there might be an unknown gene involved.

Emily and I both asked our oncologists if there was a reason we got sick at the same time, but they said it was just bad luck. However, I sometimes wonder if there was something more at play.

[Kristina Adams Waldorf] One starts to wonder about chemical or toxic exposures when there is a cluster of cancer in a particular location. I have written about male breast cancer clusters that are like a “canary in the coal mine” because it is an unusual cancer, and it can show you where toxin exposure might be playing a role in cancer development. There have been clusters of male breast cancer in men exposed to toxins in the air and water, like the first responders for 9/11. As female breast cancer is so common, when a lot of women get breast cancer, we don’t think to track it back to an exposure.

[Emma Vivian] Absolutely. I read somewhere that breast tissue can absorb toxins and chemicals in the environment, which adds to the complexity of understanding cancer, as well as further highlights the need to reduce the toxicity of our modern world. Ultimately, I’ll probably never know the exact reason or cause of my cancer, and I have to be careful not to follow through with thoughts that place the blame at my door. At the end of the day, I was just a ‘normal’ 29-year-old woman who was dealt a tough hand.

[Kristina Adams Waldorf] Going through this must have been traumatic. How did it affect you?

[Emma Vivian] I was irrevocably changed, and it wasn't by choice. I’ve always had challenges with my mental health–chronic anxiety and recurrent depression–and when diagnosed, I was in a bad place. The repeated knocks to my identity only made things worse. What does it mean to be sick at 29 years old, and have all of these parts of your life and body taken from you? What does it mean to be a young woman facing the loss of her breasts, her period, and her hair? I also had to face a dynamic shift in my thankfully very happy marriage, as my wonderful husband took on the role of my caregiver.

Losing Emily, who had been a significant part of my life, added to the tragedy. I would have traded places with her in a heartbeat. Survivor's guilt became a coping mechanism for me, a way to make sense of how little control I had. But to heal, I had to find a way to like myself again and forgive myself for staying alive.

[Kristina Adams Waldorf] How has writing impacted your journey?

[Emma Vivian] I started a treatment blog to keep loved ones updated without repeating myself. Writing became cathartic for me. My mother-in-law encouraged me to keep writing, so I started capturing the most traumatic moments of my diagnosis. After Emily's cancer returned, I felt compelled to document our memories together. Eventually, I had to admit I was writing a book.

[Kristina Adams Waldorf] What advice would you give a new cancer patient?

[Emma Vivian] Learn about your diagnosis from reputable sources, seek community support, and access mental health resources if possible. Find a creative outlet, whether it's writing, baking, or gardening! Always remember that you know your body best; advocate for yourself.

[Kristina Adams Waldorf] Thank you so much, Emma.

[Emma Vivian] Thank you for having me!

Here is a small collection of Emma’s favorite stories on Substack:

1. Lay down your lies while you walk: a list of things I want to leave behind.

Attempts at Optimism by Emma Vivian

Lay down your lies while you walk

Am I Cured Yet? by Emma Vivian is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber…

Read more

a year ago · 25 likes · 21 comments · Emma Vivian

2. 5 Things I Don't Do After Surviving Breast Cancer in My Twenties.

Attempts at Optimism by Emma Vivian

5 Things I Don't Do After Surviving Breast Cancer in My Twenties

A few days ago, I came across this powerful note from Georgia Clare…

Read more

2 years ago · 24 likes · 12 comments · Emma Vivian

If you would like to read other posts from me about my journey, here are a few:

1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Extremes. The extremes of poverty give me perspective on my grief. https://www.afterhesaidcancer.com/p/extremes

3. That Ribbon. Feeling excluded from the world of ‘pink’ that defines breast cancer. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. A complication of his treatment nearly took his life unexpectedly. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

  Subscribe now

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I sat next to the dog with a cup of tea, enjoying a peaceful moment, and trying hard not to think about anything. Along the back fence of our yard grew a tall hedge of Portuguese laurels, so thick it looked like a giant wall of green. Their dark, waxy leaves were rustling in the wind, a whispering and soft sound that put me at ease. Whatever came next, we would figure it out together.

It would be another month until he had the mammogram of the second lump, when we would learn if the lump had changed and if a biopsy was recommended. Worst case scenario, it was cancer, and the chemo rodeo might begin again. If he needed more chemotherapy, they would opt for a different regimen than the one he had the first time. Although these treatments had been effective, it would be too hard on a person’s heart and body to take the same drugs more than once. The drugs would need to be gentler, which was something that a drug should never be with cancer.

Tell your doctor that I am done with this lump and just want it removed, I told him. He sent an electronic message to his doctor, and in a few hours, he received a reply. Wait and see what the mammogram shows, and then we will decide what to do. It was a prudent, professional, and evidence-based response. I might have said something similar to my patients if they had demanded surgery before we had even gotten the test result.

But I couldn’t forget the names and stories of the two men I knew who had been diagnosed with breast cancer twice, once on each side. In each case, it was thought that a second breast cancer in a man was nearly impossible. Just as I felt that my husband couldn’t get this kind of cancer. Young, healthy, no family members with breast cancer. If they refused to do a biopsy, I would bring up the story of a man who died in his late forties from a small lump in his breast that they had waited too long to take out. It didn’t look suspicious on his mammogram, so they waited and sat on their hands.

I sighed and returned to studying the rhythmic movement of the leaves and their mesmerizing color. They weren’t as green as I originally thought, especially where the shadows hit them, and they faded to black. For a moment, I recalled the blackness in my chest the first year after his diagnosis—crushing, suffocating. After only a few seconds, I shivered and stretched my arms to the sun. When I looked at the leaves again, I saw a dappled light filtering through the laurels, highlighting the emerald green leaves amidst the darker ones.

The pressure in my chest was still there, but it was only a shadow of its former self. Somehow, I was grateful for it. I knew that I could always count on the pit in my chest to be a barometer of my mental health, and the internal tug-of-war that I couldn’t win. It would remind me of the untenable position of trying to be both a physician and a caregiver. One side would surely lose.

The wind picked up, and the laurels murmured their assent to this wandering train of thought. I looked around the garden and let my breath out in a long exhale. The garden was getting overgrown, a sign of how differently I spent my time these days. Long tufts of yellow-green mondo grass had taken over the pots, crowding out the flowers that had long since died off. There was a beauty to this wild and unkempt garden that I could appreciate and learn to love. The rosemary and thyme were still thriving, the last symbol of my dedication to keeping up the flowerpots before he got sick. In the spring, the grass camouflaged small bird nests tucked into the pots, keeping the young birds off the ground and safe from predators.

I got up and stepped over the slumbering animal. Without thinking, I walked to the patio's edge and removed my shoes and socks. An urge to walk barefoot in the grass came over me. The damp grass felt soft, grounding, forgiving. I took a few steps and studied the backyard I had neglected for so long. A corner had become overgrown with evergreen shrubs. If we removed them, there would be room to plant something to remind me of the enduring love that made me feel I couldn’t live without him.

Perhaps I would plant a cherry tree. Last week, cherry trees bloomed in Seattle. Overnight, hundreds of pink and white blooms burst forth from the trees so unexpectedly that the trees seemed to struggle to hold themselves upright under their weight. Then, as suddenly as they appeared, the blooms fell to the ground, leaving only a carpet of petals.

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work, you can do so by:

• Hearting this post so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

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• Taking out a free or paid subscription to this Substack

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Jessica, would you please tell me a little bit about yourself?

[Jessica] I have been sort of swimming in grief, professionally and personally, for most of my adult life. It’s really been a compass for everything that I do.

When I was 17 years old, my mom was diagnosed with a brain tumor. It was two weeks before Christmas, my senior year of high school. I had not yet decided where I was going to college. I had decided where I was going to apply, but I hadn't even sent the applications in yet.

We knew about her brain tumor for 11 days, and then she died. He death obviously changed the trajectory of a lot of things in my life.

My first words were that she's not going to see me graduate from high school. And that's the first thing. And within a few years, I lost my mom, my paternal grandparents, all of the animals that I grew up with, including my horse that I shared with my mother. And when I lost my horse, it was like losing her all over again, because he was really my, my own personal connection with her, right?

[Kristina] Are there principles that guide you in your work as a hospital chaplain?

[Jessica] Chaplains help people find hope in a mess. And we're all in some sort of a mess. Whether you're diagnosed with cancer, have a loved one with cancer, or are admitted to a hospital facing a new diagnosis -- everyone's in some sort of a mess. And everybody needs to find hope in something. Chaplains are present for people of all faiths and no faith at all.

I have 15 years of experience as a pediatric chaplain, so my focus is on children, childhood trauma, cancer, and the neonatal intensive care unit. Interestingly, children cope using hope. The core of grief for me is to help people find the source of hope that helps them through the moments of each day and process the big feelings instead of putting them under the rug.

When we allow grief in and accept the big feelings that come with it, it is a compass for our new normal and for rebuilding the sort of mosaic that we become after grief. Things go back together, but they are not the same. Yet, they are equally beautiful.

[Kristina] What lessons do you think you have learned in your personal life and your career?

[Jessica] Well, a lot of it is that hope is sometimes hard to see and find. In a faith context, people sometimes feel abandoned by God, but God and hope are still there. Some days, we have to dig a little deeper.

Whether you are grieving yourself or caring for someone who is grieving, there is no timeline. It’s been 26 years and I'm still grieving my mom. It's just a different grief.

Grief is also cumulative and can resurface feelings of a different period of grief for someone else. Grief isn't linear. When we lose someone or an animal, it can bring so much back. It's okay to still be triggered years later. There are also many different types and layers of grief. There is not just death grief; there is also anticipatory grief.

[Kristina] It took me a long time to understand that anticipatory grief is a thing and to have it normalized for me. In retrospect, my self-judgment that I was a bad spouse and couldn’t be strong for my husband prevented me from moving through my grief.

[Jessica] As a bereaved person and a chaplain, I have a list of things never to tell someone. ‘Be strong’ is one of those things not to say. When I hear someone say this, I try to reframe it. I ask them, what does strong look like for you? Perhaps being strong is being authentic with your feelings or grieving out loud. When you do this, you are also teaching your children how to grieve. When you cry in your room alone, your children might think that’s how they need to cope and hide their grief. We shouldn't hide our grief. It’s better to be authentic and real with our feelings.

[Kristina] I really like this framing. What would you say to the readers out there who are grieving and struggling?

[Jessica] I would encourage anyone grieving to take it day by day and to give yourself grace. Don’t think that you need to be at a specific point in your grief at a particular time. Take away the “should’s” that are cluttering your brain. Everyone grieves differently. The five stages of grief were written for the dying person, not the bereaved. Often, we get caught up in the “five stages” of grief, thinking that there is an order to grief or that we can check off a certain stage that we have passed through. Give yourself grace and release the idea that there's a timeline. Let yourself feel the emotions flowing through you.

[Kristina] Thank you for your time today. I really appreciate talking to you.

[Jessica] You're very welcome. Thank you for having me.

If you would like to find Jessica Shannon on Substack, she writes “Hope in a Mess”.

Here are a few of her posts that resonate with me:
1. Move Forward, Please. “Give yourself grace in your grief, and surround yourself with people who make you feel safe enough to tell silly, sweet, and sad stories about the people and pets you miss regardless of how long it’s been since they died.”
2. Favorite Hellos and Hardest Goodbyes. “Grief is cumulative. We re-grieve past losses when we lose someone else. We are grieving the sudden loss of a beloved best friend, Buckley, and our grief over Oliver, Lily, and Daisy has been triggered. We never stopped grieving their losses, but they’re at the surface now.”

If you would like to read other posts that I have written on grief, here are a few:

1. How It Began. This story is the origins of my Substack and tells of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. The Day He Nearly Died. The story of my husband’s near death in the middle of chemotherapy from a blood clot. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

3. A Low Priority. Caregivers are typically forgotten by the healthcare system, even when they are depressed. https://www.afterhesaidcancer.com/p/a-low-priority?r=1acedj

4. Well Dressed and Smiling. A story about the postpartum grief of one of my patients. https://www.afterhesaidcancer.com/p/well-dressed-and-smiling?r=1acedj

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

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I picked it out of the trash to take a closer look. Beneath his name and the blood test was the amount charged, $4,900. Then, in bold lettering, “Appeal results: Coverage has been denied.”

I stopped reading and threw it back into the trash, regretting having picked it up in the first place.

The bill was for a personalized blood test designed to detect tiny fragments of my husband’s cancer swimming around in his blood. It was sometimes called a “liquid biopsy” because its purpose was to check if the cancer was starting to grow back from somewhere in his body. Once the cancer started growing, it would send off cells and other tiny fragments of itself that could be detected using this test.

I hesitated for a moment and got the paper out of the trash for a second time. My overwhelming instinct was not read the letter and to walk away. Pretend I hadn’t seen it. Go on with my day.

But then I wouldn’t figure out the source of my irritation.

I took the letter to the dining room table and sat down to concentrate.

The letter continued, “After reviewing the information available, a Physician Reviewer specializing in General Surgery and General Vascular Surgery, determined that we cannot approve the above service because Regence considers the service investigational…There is insufficient research to show that testing for circulating tumor/cell-free DNA or circulating tumor cells for purposes other than targeted treatment selection can improve overall patient health outcomes.”

In other words, the letter said there was no data to support that my husband would live a longer and healthier life by taking this test. This was true, and a complete crock, all at the same time. My neck began getting hot and tension entered my chest.

Yes, there was insufficient research showing that lives were longer when doctors ordered this test, but common sense dictated that nipping something in the bud when it was a small wave was a superior approach to waiting until something became a tsunami.

Imagine a rich, green lawn that had been fertilized and mowed with loving care by a Master Gardener. Every spring, the lawn was aerated, seeded, and watered. The lawn’s texture had become so soft that one felt compelled to walk on it barefoot.

Suddenly, a weed comes into view at the edge of the lawn. It’s just one small weed. Of course, we could ignore it and say that there was no scientific evidence that finding it early and removing its entire root system would prevent the weeds from multiplying. But it made sense to me that the earlier the weed was detected, the sooner it could be killed. Once the weed had multiplied into hundreds of weeds, getting control of it would be a different story entirely.

The new breast cancer doctor told us the story of how she used this test in one of her patients, a young woman with breast cancer in remission. She had the woman take the test several times over the course of a year. The first few tests were negative, and then she had a slight, borderline positive. So slight, that it was unclear if the test was truly positive.

The physician went ahead and ordered scans to check for return of the cancer, and a new, small ‘hot spot’ of likely cancer was found the bone of her arm. She underwent radiation, and the blood test for cancer turned negative.

Developing a personalized cancer test that could be performed on a blood sample was a tremendous success story for how science could benefit human health.

I read a little further. “In their appeal letter, your provider requested that this appeal be reviewed by an MD, specializing in Medical Oncology. When provided, the specialty-matched doctor will be in the same or similar specialty as the doctor who ordered the treatment, but we are not able to guarantee that the doctor will have the same sub-specialty or additional areas of expertise as the ordering doctor. Your appeal was reviewed by a physician qualified to review your appeal request.”

What a crock.

I looked up the “Physician Reviewer” and found where he practiced and his age. He wasn’t a cancer specialist. He was a vascular surgeon. The last time he had any involvement with breast cancer was on a surgical rotation during residency, about three decades in the rearview mirror.

In all my years as a practicing physician, not once had a Physician Reviewer – employed by the insurance company – overruled the insurance company’s initial or second denial of payment. It was such a conflict of interest; I was surprised that it was allowed to continue.

Once in my career, I was successful in getting a patient’s testing paid after a third appeal to the insurance company. In this case, the insurance company was required to pay for an external physician to review the case, who was not paid by the insurance company.

So, this appeal’s denial letter was the end result of a long chain of events that was fated to end in one specific way. The doctor submitted the bill. The insurance company would reject payment. The doctor would appeal, and the insurance company would ask their employed “Physician Reviewer” to deny the appeal. A second appeal would be issued, which would be summarily denied.

It was an elaborate dog-and-pony show between the insurance company and the doctor. In the end, the cancer test manufacturer would write off the bill. Our new breast cancer doctor had cut a deal for us with the manufacturer. She enrolled many patients in their clinical trial of the blood cancer test, so they ‘owed’ her to cover the cost of his testing outside the clinical trial.

Essentially, the test was free for us. The bill collectors would never come to our house. We didn’t have to worry about these letters with “Appeal Denied” as the subject line.

I should have been happy, but I wasn’t. There was a piece that was gnawing at me, and making it hard for me to look at the letter, but also hard to leave it in trash.

Not everyone had access to the test. The test represented my husband’s privilege within the healthcare system and a reminder of the thousands who couldn’t access or pay out-of-pocket for the test. The U.S. healthcare system has several tiers of care, depending on whether you are insured and the type of insurance you have. There was a privilege to being seen by this physician and having this kind of care.

He had access to this test for several reasons, mostly as a result of some sort of privilege. His physician-scientist wife pushed for better care, because she had the education and experience to know what exceptional health care looks like. He had excellent health insurance, a perk through his wife’s job at the University. There was also a little luck in happening upon the right breast cancer doctor, who rendered a third opinion on his care. All of this landed him in the right place at the right time for an exceptional breast cancer doctor to provide cutting-edge care.

Not everyone has access to this level of breast cancer care. This made me feel ashamed and disgusted by the system that kept patients within separate hierarchies of medical care.

I got up from the table. I felt disgusted by the system that kept patients within separate hierarchies of medical care.

I wanted everyone with breast cancer to have access to this test, if it could benefit their care. It was just a matter of time before it would become the standard of care. This was already the case for patients with colon cancer.

I thought about the Physician Reviewer once more. He played his part in this elaborate play. The test did meet the insurance company’s criteria as “investigational”. He clicked a button, denied the payment, and went on to the next item in his inbox.

Did he have a spouse with cancer, about whom he prayed that they would live until their daughters could graduate high school? Doubtful, I thought with sarcasm. Then, just as quickly, I hoped he didn’t. No one deserved to be in this position.

I crumpled the paper up and threw it back into the trash. This time, it was definitive. The paper would stay in the trash. I was done with it and done thinking about this.

And the bill would disappear into the ether, where it belonged.

If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Canary in a Coalmine. The cluster of cancer cases — including male breast cancer — at Camp Lejeune in North Carolina and the link to contaminated water. https://www.afterhesaidcancer.com/p/canary-in-a-coalmine

3. That Ribbon. The gendered stereotype of breast cancer and my emotional response as a wife of a man with male breast cancer. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. The story of my husband’s near death in the middle of chemotherapy from a blood clot. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work, you can do so by:

• Hearting this post so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

Subscribe now

Share

Leave a comment

************************************************

Kristina: Hi everyone. Welcome to "After He Said Cancer." I am a physician-scientist and the wife of a man with male breast cancer. Today, it is my pleasure to talk with John Saltalamacchia, whose wife passed away from triple-negative breast cancer in 2023. He was her full-time caregiver.

John, how are you doing right now?

John: I don’t recommend anything that I have gone through to anyone. My life has been a weird journey since her passing—it's moved from hellscape to a general dystopia. I left the world to take care of my wife, and I feel like a fish out of water trying to reintegrate.

Kristina: Every part of the cancer journey is difficult. Watching someone go through this is its own emotional purgatory. The uncertainty of losing them is something I continually grapple with.

I don't want to lose my husband. He's my best friend. The idea that something's going to take him away makes me angry. I think the myth is that you are supposed to deal with grief, the anger disappears, and you arrive at acceptance. But I still feel all the grief emotions at once.

John: I've been studying this for a year and a half, trying to find my way through it. I've gathered as much information as possible from others' experiences—newly grieving, down-the-road grieving, reading books, whatever seems helpful.

The conclusion I've reached is that grief doesn't go away. You're metaphorically carrying a weight you somehow continue carrying, which becomes more normal—though that's not the right word. Though you do acclimate, and then it feels more like a flat line of pain. Although I had time to anticipate this, there's a profound difference between anticipating loss and experiencing it.

As someone said at my wife's eulogy, I would have been happy to continue caregiving forever for her to be there. I would never have stopped taking care of her or given up.

But when she passed, I experienced a grief so painful that it seemed as if I hadn’t done any grief work in the five years since her terminal cancer diagnosis. The difference between the second when she was alive and the next when she was gone was unlike anything I could have imagined.

Heidi Saltalamacchia, John’s wonderful wife

Kristina: I had a taste of this disconnect between anticipatory grief and actual grief when my father died of dementia in 2014. Once he died, my world went black. I remember feeling shocked and thinking, "I should have known this was coming. What is wrong with me?" It's taken me years to realize you can't judge yourself.

My therapist said, "When you're in the middle of hell, the only way out is to go through it." It’s important to allow yourself to feel whatever comes without self-judgment. There are few resources to help caregivers go through this emotional journey.

John: Caregiving support is not baked into the system. During COVID, when my wife had radiation, I couldn't go in with her. While waiting in the car, I found a support group for male caregivers in the Midwest. The group leader told me about a resource in New York, a woman who pioneered caregiver support. She was at Sloan Kettering, where we'd been going for three years, and I hadn’t known about her.

Even when resources exist, nobody tells you. You don't have time to research. You can't say, "Hey, you have cancer. Let me take a month off from this rollercoaster to research resources." None of that happens.

Kristina: There's someone on Substack— —who has compiled caregiving resources after going through this herself. It's tremendous what she's done. I recently became a Foundation Supporter of her Substack because I admire what she has done.

I sympathize with how hard it is to access support. I remember knowing I was depressed, thinking, "There's got to be a support group," but nobody knew of one for caregivers at our cancer center. You're not the priority, yet you're holding everything together.

What would you recommend to someone who is caring for a cancer patient?

John: I'm a terrible person to ask because I'll tell you the truth, which may not help anybody.

We were drowning in every conceivable way. Even with theoretically available resources, I couldn't access anything or look up information, and there was no opportunity.

I've been studying death doula work and better approaches to end-of-life. That's an example of a good way to prepare for an inevitable outcome, whereas with caregiving, no one prepares for that ahead of time, and then they’re just screwed.

Things could have been different with better resources—a big family, grown kids, younger parents. In our case, we had none of that; our parents were elderly, and then COVID complicated the possibility of outside support for much of that time as well.

Kristina: Thank you for that brutally honest take. I appreciate you sharing your experience.

John: Thank you for doing this. Maybe some people will hear this and will get better educated before they are in this situation. I hope other people have more support to help them through this experience in the future.

Here are other ‘After He Said Cancer’ caregiving stories near to my heart.

1. A Holy Experience. My conversation with , an organic farmer in Hawaii, who was a caregiver for her wife who passed away from breast cancer. https://www.afterhesaidcancer.com/p/a-holy-experience?r=1acedj

2. A Queen. My story is about one of the most well-known caregivers in the male breast cancer community, . https://www.afterhesaidcancer.com/p/a-queen?r=1acedj

3. Friendship at the End of Life. My conversation with , a hospice chaplain and Baptist minister, about his work supporting those at the end of life and spiritual caregiving. https://www.afterhesaidcancer.com/p/friendship-at-the-end-of-life?r=1acedj

4. A Low Priority. My story about the neglected mental health of caregivers. https://www.afterhesaidcancer.com/p/a-low-priority?r=1acedj

If you haven’t heard of , the Carer Mentor, I highly recommend subscribing to her and visiting her website. The resources on her website are endless and growing.

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

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I think Mark would be happy if I talked about the rates of prostate cancer by age and the signs of prostate cancer — even before our interview.

Rates of Prostate Cancer by Age

Most men are diagnosed with prostate cancer when they are older. From the Prostate Cancer Foundation website, I found these rates for prostate cancer diagnosis: 1 in 11 for men 70 and older, 1 in 19 for men between 60-69, 1 in 54 for men between 50-59, and 1 in 456 for under age 50. https://www.pcf.org/about-prostate-cancer/what-is-prostate-cancer/prostate-cancer-survival-rates/

Signs of Prostate Cancer

Early Signs*: frequent urination (especially at night), difficulty starting or stopping urination, weak/interrupted urine flow, pain or burning during urination.
Later Signs*: groin pain, bone pain (back, hips, pelvis), nerve pain in legs or feet, erectile dysfunction, blood in the urine or semen, weight loss, and painful ejaculation.

*Note that other conditions can cause these symptoms too, so it is best to get it checked out by a doctor.

Interview

[Kristina] Welcome to After He Said Cancer. I'm Kristina Adams Waldorf, a physician scientist. Today, I'm speaking with Mark Stevenson, who was diagnosed with prostate cancer in his mid-forties.

[Mark] I was 46 when diagnosed in 2021. It wasn't something I expected. I was relatively fit and healthy, with no family history of prostate cancer that I was aware of. My diagnosis came after a conversation with a work colleague who was having prostate cancer surgery.

I started noticing I needed to use the toilet more urgently. A PSA test showed my levels were high at 18.1. Subsequent tests confirmed Stage 3 prostate cancer. It was a complete shock as I had virtually no symptoms.

[Kristina] That seems incredibly young.

[Mark] Exactly. Prostate cancer always seemed like an older man's issue. In hindsight, I realized I'd been experiencing some warning signs, like a persistent pull in my right groin during running, which I'd ignored.

The UK healthcare system was supportive. I went through multiple tests, including an uncomfortable biopsy. Eventually, Dr. Akhtar recommended a robotic radical prostatectomy. I was emotionally overwhelmed but trusted the medical team.

The pre-operation process prepared me for potential side effects like erectile dysfunction and bladder control issues. I was also fortunate to have access to a therapist to help process my feelings. The operation went well – they removed the prostate, did a biopsy, and took some lymph nodes. Everything came back clear, but recovery has been an ongoing process.

My wife, Louise, has been incredibly supportive during this time. It was initially during COVID, so I attended appointments alone. Her first reaction was one of strength – "Mark, it's fine. You're always fine." She did find her way to support me by researching extensively, cutting through the medical noise, and gently presenting information about diet, exercise, and managing side effects.

[Kristina] Were you considering genetic factors? Prostate cancer can often be part of broader cancer clusters.

[Mark] Unfortunately, genetic testing isn't a priority in the UK healthcare system. My family history only included my father's bowel cancer. We're considering private genetic testing for our children, especially given the potential inherited risks.

[Kristina] What have you learned through this experience?

[Mark] Two crucial things. First, don't take time for granted. We often assume we'll do things in retirement, but life can change quickly. We've learned to live more in the present, doing things now rather than waiting.

Second, take ownership of your health. I was previously flippant, assuming medicine would fix everything. Now, I understand the importance of personal health choices. It's about making small, consistent lifestyle changes.

[Kristina] What are the warning signs that men and their partners watch for?

[Mark] Going to the toilet (urinating) more urgently is a key sign. Other indicators include blood in urine or semen, and unexplained aches. I recommend PSA tests from your forties, especially if there's potential genetic risk.

For partners, the approach is subtle. My wife doesn't lecture—she presents evidence gently, like recommending a nutritious broccoli soup or sharing research, but ultimately leaving the choice to me. It's about education, not dictation.

The most important message is awareness. Talk about health. Don't wait for a crisis to make changes. Small adjustments in diet, exercise, and lifestyle can make a significant difference.

[Kristina] What would you tell others in a similar situation?

[Mark] Don't wait. Allow yourself to learn from others' experiences. You may not prevent every health issue, but you can take steps to support your body. For partners, the key is gentle guidance – present information and step back.

This journey has taught me that health is a collaborative effort. It's about listening to your body, being proactive, and supporting each other through challenges.

[Kristina] Thank you, Mark, for sharing your story so openly.

[Mark] Thank you for the opportunity to spread awareness.

Other Writers in the Cancer and Caregiving Space

Victoria, the Carer Mentor. You can learn about her journey here: Who Started Carer Mentor and Why? Victoria is inspirational and posted an Anthology of Cancer Experiences this week to highlight the important role of everyone in this journey. She also compiled a recommendation list of organizations and books on the cancer journey. She highlighted the writers below in greater detail in her anthology this week. I repost a mention of them here.

Emma Vivian writes Am I Cured Yet? by Emma Vivian. She writes about surviving the experience of breast cancer beyond that of her friend.

Jeannie Moloo writes A Full Plate with Jeannie Moloo about gaps in cancer care, her late husband’s experience of nonHodgkin’s lymphoma, and her own experience of Breast cancer.

Mel Erwin writes My Lovely Lungs about living with stage 4 lung cancer.

Jennifer Garam writes Rebuilding With Jennifer Garam about her recovery from ovarian cancer.

And, of course, our featured guest today, Mark Stevenson, who writes Prostate Cancer: The Bits They Leave Out.

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

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“Here, put your fingers here,” she said. She was the third specialist that we had seen for male breast cancer. After several medical errors, I wanted a fresh set of eyes on his imaging and her opinion of the best next step.

She directed my fingers to an area a few centimeters away from his left nipple. The moment I pressed my fingertips down on the skin, I could feel it immediately.

It was a small lump.

As I pressed, the lump moved underneath my fingers. Normally, this was a good sign that it wasn’t tethered in place by the small octopus arms of the cancer beginning to spread in all directions. But his other lump had moved freely like this too.

Nausea came over me in a wave, and my legs suddenly felt weak.

In so many ways, it felt just like the one in his right chest that ended up being cancer. The one that required a year of chemotherapy and radiation, followed by two years of immune therapy. The one that nearly took his life when a blood clot formed near his port site and spread to his heart. The one that I secretly hated but was trying to accept for my own healing.

I returned to the chair and sat down before my legs buckled. My peripheral vision was starting to fade.

To my knowledge, no one had examined the breast tissue on the “normal” left side of his chest since he was first diagnosed three years ago. That was the last time that his team of breast cancer doctors had examined him thoroughly. During that visit, they were focused on the lump near his right nipple and the rock-hard lymph nodes in his right armpit.

Had anyone touched his chest since that first physical exam three years ago? Perhaps, the doctor in Boston did.

I tried to think back to that visit, which was a “second opinion” to rethink his care after his cancer team in Seattle began making mistakes. The Boston doctor must have examined his chest, but this was probably focused on the right side where the cancer had been removed. By that time, there was nothing but a long scar where the tumor had been. Even the redness from the radiation was also gone.

Wait. Did he examine him, or was the visit solely for counseling? I struggled to remember. Certainly, most of the visit was spent explaining recommendations that differed from the plan proposed by the Seattle team.

The physician was still examining the left side of his chest when her eyes met mine.

“Did they know about this?” she asked.

“No – no – no,” I sputtered, the lump in my throat growing. “I think this is new.”

“We need to check this out,” she said. “I will order a mammogram, and they will follow it up with either an ultrasound, biopsy, or both – depending on how it looks.” I knew the drill, having ordered tens of thousands of mammograms in my career.

I rose in my chair but quickly sat down again. There was no point in getting up, and I didn’t know if I could rely on my legs to hold me.

Male breast cancer was already rare, but to be diagnosed with a second cancer in the breast tissue on the other side of his chest was unthinkable. But not impossible.

I suddenly remembered reading that men with breast cancer have a higher chance of being diagnosed with a second cancer on the opposite side. When I read this, I assumed that it only applied to men with a genetic mutation predisposing them to breast cancer.

My husband couldn’t get a second breast cancer. Of this, I was sure. He had a normal genetic screen of more than 60 mutations known to increase the chance of developing breast cancer. He had been unlucky once. How could lightning strike him twice?

I looked over at him, lying on the exam table. He was semi-reclined and locked eyes with me. His eyes were wide open, eyebrows slightly raised, lips slightly parted. The strong and confident look that defined my husband had melted for an instant. He understood what this could mean.

The tightness in my chest was returning. The little grief demons had found their way back into my chest and were dancing at the thought of a mental health collapse. God, I hated them.

It felt like we were at the beginning again.

I couldn’t fathom it.

************************************************************************

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

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• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

************************************************************************

If you would like to read other posts, here are a few:

1. How It Began. This story is the origin of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Dandelions in the Lawn. https://open.substack.com/pub/tigerinmykitchen/p/dandelions-in-the-lawn?r=1acedj&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

3. The Day He Proposed. https://www.afterhesaidcancer.com/p/along-the-salish-sea?r=1acedj

4. Surrender. https://www.afterhesaidcancer.com/p/surrender?r=1acedj

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Mel's story challenges our ideas about lung cancer, particularly the assumption that it mainly affects smokers. As a non-smoking woman diagnosed with non-small cell lung cancer, her experience highlights an emerging women's health crisis that remains underrecognized.

[Kristina Adams Waldorf]: Hi, Mel. I'm excited to welcome you to the After He Said Cancer podcast. I'm Kristina Adams Waldorf, and we talk about cancer, grief, and caregiving. Please tell us a little bit about yourself.

[Mel Erwin]: Thank you for inviting me. My name is Mel, and I live in London. I'm 57 years old, and I was diagnosed with lung cancer in 2020 when I was 52.

2020 was not a great year for anybody. I got COVID-19 in April. I recovered and went back to work, but by June, I developed symptoms that seemed to be long COVID. My body was shutting down. I couldn't walk to the end of the street.

My general practitioner arranged an X-ray and blood test. Given the pandemic pressure on hospitals, it was incredible I got these quickly. He called the same afternoon and said my blood tests were fine, but they found a mass on my left lung. It felt like a meteor had gone off in our garden.

I asked if it could be long COVID. He said they needed to investigate. Then I asked the fateful question: could it be cancer? And he said, yes, it could be.

Over the summer, I had all the scans – CT scans, PET scans – alone during the pandemic. My loved ones couldn't come with me. I didn't see a single doctor face-to-face. In late August, a doctor I'd never met rang and told me I had non-small cell adenocarcinoma.

The mutation I have is common in non-smoking women and people of Asian origin. Many think lung cancer only affects miners or heavy smokers. But thousands of women and men, especially women, are diagnosed with non-smoking lung cancer every year. It's almost a women's health crisis.

[Kristina Adams Waldorf]: I know a few people with this same cancer. It's not as rare as one would think. And it feels so unfair.

[Mel Erwin]: Nobody deserves cancer. Even if you've smoked, you don't deserve cancer. The worrying piece is that when women go to their doctor with symptoms – shoulder pain, back pain, or a cough – because they don't smoke, the doctor might not order tests that could detect lung cancer. This is why 75% of people are diagnosed with Stage 4 (metastatic) disease.

[Kristina Adams Waldorf]: That's terrible! There's such an awareness piece needed for non-small cell lung cancer and many other rising cancers.

[Kristina Adams Waldorf]: Tell me about that early time after the diagnosis, and how you emerged as a writer and advocate.

[Mel Erwin]: It's taken a long time. I think my spirit stepped outside my body. I had half a lung removed, then 4 months of grueling chemotherapy that nearly killed me, followed by radiation.

My partner Sarah would drop me off for chemotherapy but couldn't come in. I felt like my spirit doubled – my soul remained on the pavement with Sarah while another version walked through the hospital door. I had to separate myself to cope with this unimaginable life event.

I didn't really cope, and it's only as treatment finished that recovery began. The end of treatment marks the beginning of recovery, and it takes time to realize your spirit and body are not yet connected.

I've done lots to help put myself back together: therapy, walking, Chinese medicine, acupuncture, and qigong. Through these experiences, I've begun to jigsaw myself back together. It's not one thing that brought me to this place, but many tiny strands making up a thread. It's like I'm pulling back the "Mel" I left behind.

[Kristina Adams Waldorf]: I understand this perfectly. Cancer shatters one into a million pieces. It's a fight to return to that person that existed before. What would you recommend to someone in a darker place with cancer or grief?

[Mel Erwin]: First, do whatever provides gentleness or comfort in that moment. What's ahead is unknown. What's behind is no longer available. All you've got is the here and now. For me, it was having a hot bath and watching terrible movies. I wasn't ready to talk to other people with cancer yet.

It was about getting through the minutes, not just the days. I felt the love of people around me like a bright light. Love always helps. As I say, "Love is the drug,” which is a great song by Roxy Music.

When you're ready to reach out to organizations that understand your journey, you're less on an island of crippling illness. You're in a community that shares the pain and the humor, and you can feel connected.

[Kristina Adams Waldorf]: Thank you so much, Mel. This was wonderful. I appreciate your time and all of your insights.

[Mel Erwin]: You're so welcome.

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

If you are interested in reading Mel Erwin’s Substack, here is a link:
https://melerwin.substack.com/about

Here are some of Mel’s favorite posts:

1. The story of my diagnosis: COVID, long COVID, a mass on my lungs and… a meteor lands in my garden. https://open.substack.com/pub/melerwin/p/2020-we-dont-know-what-to-do-with?r=1wcqmv&utm_campaign=post&utm_medium=web

2. What does it mean to live with stage 4 cancer? Are we about to pop our clogs? Find out how we stage 4ers truly live vibrant, joyful lives.

3. The end of cancer treatment marks the beginning of recovery. And it can be long and painful. https://open.substack.com/pub/melerwin/p/the-mystery-and-difficulty-of-cancer?r=1wcqmv&utm_campaign=post&utm_medium=web

If you would like to read the origin story and other posts from Kristina (After He Said Cancer), here are a few:

1. How It Began. This story is the origin of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Dandelions in the Lawn. https://open.substack.com/pub/tigerinmykitchen/p/dandelions-in-the-lawn?r=1acedj&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

3. The Day He Proposed. https://www.afterhesaidcancer.com/p/along-the-salish-sea?r=1acedj

4. Surrender. https://www.afterhesaidcancer.com/p/surrender?r=1acedj

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What followed was a journey of unexpected clarity. Jacqui’s story is a powerful reminder that even in our darkest moments, there’s a choice: to let fear control us or to embrace life’s fleeting nature with open arms.

***********************************************

[Dr. Kristina Adams Waldorf]: Welcome everyone. Today, I am excited to talk with Jacqui Taylor, who is a writer, mentor, teacher of meditation and yoga, and formally a physical therapist. She lives in northern England and was diagnosed with breast cancer in July 2020 – in the throes of the pandemic. Welcome Jacqui.

[Jacqui Taylor]: Thank you for inviting me. I'm really excited to talk to you.

[Dr. Kristina Adams Waldorf]: First, would you please tell me about when you were diagnosed with breast cancer?

[Jacqui Taylor]: I was diagnosed with lobular breast cancer in July 2020, during the COVID-19 lockdown. My physical therapy business had been severely affected, and I had only recently started seeing patients in person again

I noticed some changes to the shape of my right breast. I looked at it and thought, "That's odd," and then did nothing else about it. I just went back to worrying about how to salvage my business. It was only when I mentioned it to a friend that she said, "You need to go and see the doctor." So, I did.

The doctor took one look and said, "That's an immediate referral." Within a week, I was seen by a specialist. Even as I sat in the clinic going from one test to the other, I was in some weird kind of, "Oh, this thing's happening, okay?"

The surgeon told me there and then – before we even had the biopsy results – that I had breast cancer. My husband wasn't allowed in because of COVID restrictions. The hardest bit was probably having to ring him in the car where he'd been waiting for three hours, knowing he would realize I wouldn't be calling unless it was bad news. When the surgeon repeated the diagnosis to him, that's when it really hit home for me.

[Dr. Kristina Adams Waldorf]: It's always such a hard thing the first time you hear either "you have cancer" or "your loved one has cancer.”

[Jacqui Taylor]: Life changing from that moment. I remember walking home from work on the Friday before my appointment thinking, "If I have cancer, I am never working this hard again," because it had been so overwhelming since lockdown.

[Dr. Kristina Adams Waldorf]: You actually had three of the four types of breast cancer. Can you tell us about that and how you dealt with it?

[Jacqui Taylor]: It took eight weeks for me to get my full diagnosis, partly because of COVID delays. I had lobular breast cancer, which is the second most common type of breast cancer. Lobular cancer is missing a protein, so it doesn't form lumps but grows in strings, meaning it doesn't always appear on mammograms.

I had an MRI to check the tumor size, and something appeared in the other breast. They investigated and found two more forms of breast cancer—ductal in situ and tubular—both in very early stages. My son joked, "What, are you playing cancer bingo, Mom? Trying to get a full house?"

The other two tumors were very tiny and would have taken years to detect otherwise. So, it was a relief to have it all sorted in one go, though it did change the treatment plan.

I was pretty calm that first day. My overwhelming memory was that the universe was giving me a message—I had been ignoring various other health issues, many of which were stress-related. I thought, "I've clearly not been paying attention, and now I've been given no choice but to stop."

Honestly, as weird as that sounds, it felt like a relief. Everything else I'd been worrying about, I could just let go of. I physically felt like all that weight lifted off my shoulders because I only had one thing to think about now.

After my first surgery, the pathology was that it was in my lymph nodes with no clear margin to the skin. They had to do a second operation to remove the affected skin and the lymph nodes. I now needed chemotherapy as well as radiation therapy.

My physio mentor and dear friend told me, "You only have one thing to worry about, and that's staying alive. Nothing else matters. You can rebuild a business, but you can't do anything if you're not here."

I just had to accept it. Melting down wouldn't help anybody, especially my kids, who were 13 and 16 at the time. I didn't want to be in that pit of doom. I've had depression in the past, so there was an element of, "I have to stay away from the edge and stay in as optimistic a place as I can." Some of it was driven by fear—I was scared of stepping over and never coming back up again.

[Dr. Kristina Adams Waldorf]: Your approach is remarkable, Jacqui. I am so impressed by your courage and clear thinking to see the big picture for you, your family, and your future. If you had advice for someone struggling with cancer or caregiving for someone with cancer, what would you say?

[Jacqui Taylor]: One thing I really grappled with was uncertainty. There's so much uncertainty about cancer, even in my current situation where there's no evidence of disease. A few weeks ago, I had a scare that required tests, and it hit me like a train.

But everything is uncertain, and we must be comfortable with that. Our future was uncertain even before the cancer diagnosis—we just didn't know it. It's simply more real when you've had something like this.

The word “cancer” is loaded with fear, and the uncertainty can drive you insane. Somehow, you have to accept that the uncertainty will always be there. It's also about making the most of every day, appreciating the people you love and recognizing what actually matters—it's not about material things.

One final thing I've learned is that it's completely alright to feel awful, hurt, or sad. Accept that these are completely reasonable reactions. Don't try to run away from those feelings. Whatever your experience is, that's okay.

[Dr. Kristina Adams Waldorf]: For me, the hardest thing is avoiding the self-judgment that says, "You shouldn't feel this way. Someone else would be tougher and get through grief more easily."

Actually, your body needs to feel these emotions and sit with the grief and discomfort to be able to move through. This doesn’t mean you get over grief. You learn to live with it.

Would you please tell us about your book? It is called, The Space Between: Breast Cancer and Finding Me. https://www.amazon.com/Space-Between-Breast-cancer-finding/dp/B0BM84RTZ5

[Jacqui Taylor]: My memoir started as journaling and my middle-of-the-night thoughts. It covers the 12 months from diagnosis to its anniversary, which I celebrate yearly because it marked a new beginning for me.

My message is: don't wait for something as monumental as cancer to start examining what matters and making changes in your life.

[Dr. Kristina Adams Waldorf]: Thank you, Jacqui. This was wonderful. I appreciate your time and courage in sharing your story and approach.

[Jacqui Taylor]: You're welcome. Thank you for having me.

If you are interested in learning more about Jacqui Taylor and reading her Substack, Inner Source, here is a link:
https://jacquisonelife.substack.com/about

If you would like to read other posts that are part of Kristina’s evolving memoir (After He Said Cancer), here are a few:

1. How It Began. This story is the origins of my Substack, and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. A Beach Surprise. A nice day at the beach turns into something else entirely, thanks to our mischievous animal. https://www.afterhesaidcancer.com/p/a-beach-surprise

3. A Queen. The story of a dear friend who lost her husband to breast cancer.

   https://www.afterhesaidcancer.com/p/a-queen

4. 100 Different Fonts. A conversation over breakfast turned into a question as to why cancer couldn’t easily be cured. Read on for my answer.

   https://www.afterhesaidcancer.com/p/at-the-breakfast-table

*********************************************************************************************************

Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:

• Hearting this post, so that others are encouraged to read it. (This helps others to see my posts.)

• Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts

• Sharing this post by email or on social media

• Taking out a free or paid subscription to this Substack

• Leaving me a tip by buying me a coffee.

After He Said Cancer is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

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He hadn’t set such a brisk walking speed in a long time. He was recovering from chemotherapy, but this surge in speed was fueled more by an ongoing irritation with our daughters than a sudden return to health.

“Me too,” I echoed and sped up to keep abreast.

If you saw us on the street, you would see a couple walking a rambunctious yellow labrador, zigzagging from lawn to lawn. That was merely a cover.

Venting and plotting — in secret — was what we were actually doing. This was our time to vent to one another about the many maddening issues that arise from parenting teens. We needed a united front, and this was our time to get on the same page.

We wanted to decompress and strategize how to address issues like mood swings, excessive screen time, messy rooms, unhealthy food choices, and an increasing (healthy) desire for independence.

“Their bathroom has been a pigsty for weeks,” I said, verbalizing what I knew he was thinking. My tolerance for a messy environment was higher than my husband’s. But even for me, they had gone too far.

Clothes were left crumpled on the floor. Sinks clogged with hair. The bathtub drain had a pinkish hue. The garbage can near the toilet was overflowing…The dog had torn out their garbage a few times that week and had eaten God knows what.

We had tried a hands-off approach for a while. How long would it take for them to become disgusted with the state of their bathroom and clean it up? Surely, I thought, they couldn’t go more than a week or two with it looking like this.

I was spectacularly wrong. Not only had they not cleaned it up, but they had moved to other cleaner bathrooms to shower and get ready. Now, these bathrooms were becoming stained with makeup and cluttered with toiletries. Even the drain in the guest bathroom sink was starting to back up – likely cluttered with one daughter’s chestnut brown, near waist-length hair.

Oh, yes. I was furious, too. Our first plan of doing nothing and letting the filth accumulate had failed. The question was, what would be our second course of action?

My husband stopped walking abruptly. He stood quietly for a moment, looking out at the horizon, then took two steps and stopped again. He turned toward me in one smooth motion.

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