More than Your Cancer: Nancy’s Story

Meet Nancy.
Nancy is 60 years old.
She has a great life.
She also has Stomach Cancer, Stage IV.
Here is her story.

In the mid 1960s, America recognized a need for skilled professionals and began recruiting experts from overseas, namely Asia. At the same time, Korean families facing rising unemployment rates, political instability, and military dictatorship became uncertain about a stable future in their own homeland.

With America opening the floodgates, waves of Korean immigrants steadily arrived, decade after decade, quickly forming one of the largest immigrant communities in the U.S.

The children of these immigrants, referred to as the “the Second Generation” make up the current Korean American community of the present day. Nancy’s family was one of those who realized their chances for a better life lied an ocean away, and so like many others they decided to start anew on the outskirts of Los Angeles.

Nancy, originally from P’yŏngyang, North Korea, immigrated to the United States as a toddler in the 1960s with her parents, sister, and maternal grandmother. Her father eventually established himself as an electrical engineer and her mother as a translator.

Even today, over fifty years later, Nancy still answers to her Korean name, Haneul (which means Heaven), but now usually only hears it at home from her mother. Nancy’s much older sister, Bora, chose to keep her birth name since she had little interest in her new life in America. Bora, leaving behind a close group of childhood friends and a sweetheart when they moved, was resistant to assimilation and mostly kept to herself or helped her grandmother prepare traditional Korean meals.

Nancy on the other hand grew up being excited by everything American. She loved cheeseburgers and baseball and was fascinated by convertible cars and the local fashions…bell bottom jeans and tie-dyed crop tees were her favorite. She very badly wanted to make American friends and practiced English for hours at night, flinching every time her accent was detected. Nancy worked hard to have a simple, American upbringing and pretended that she belonged until she felt like she actually did.

And she did.

Nancy’s parents, recognizing her desire to fit in with American culture, supported her attending a public school as long as she maintained her mother tongue, which she promised to do. She ignored her thick, dark flowing hair and porcelain skin which stood sharply against the blond beach waves and freckles of her school friends. She joined the tennis team, tried weed on a few occasions, and even learned to surf. She decided that, by all accounts, she was a new kind of California-girl.

And she was!

Being a motivated, disciplined student, and a true patriot, Nancy accepted a scholarship at Cal State LA where she joined their Army ROTC program, studying engineering, like her father, and excelled in her coursework. During her Junior year, Nancy fell fast and hard for a friendly, charismatic blond-haired, blue-eyed young man from Nebraska. As handsome as he was good-natured, Paul was a charming, hard-working, family-oriented engineering major interested in building irrigation systems in rural communities, like the one he came from.

As opposite as their backgrounds were on paper, the two fell madly in love. Tall, broad and corn-fed, this was not a man that Nancy’s immigrant family expected to walk through the door of their traditionally-decorated Korean-style home. He quickly won over Nancy’s grandmother and sister with his open smile, generous sense of humor, and obvious adoration of Nancy. And after earning her parents respect and approval, Paul proposed to Nancy on the day of their college graduation.

As a Second Lieutenant in the Army Reserves, Nancy spent the next eight years designing Army building structure plans, developing civil works programs and working with natural resources to pay off her college degree. During that time, she and Paul married and welcomed Jon Jacob (who they called JJ) and a few years later, little Evie.

When the war in Afghanistan launched in 2021, Nancy was compelled to join the effort and deployed for two back-to-back tours of duty, leaving Paul in charge of their home and their school-aged children. Proud of his wife for her unwavering loyalty to her country, Paul embraced his role as head of household, and ran a tight ship keeping the kids clean, fed, and on schedule with their schooling, homework, and activities…most of the time. “Every night, when I finally got them off to bed, I found myself taking deep breaths and giving myself pep talks. Every day that Nancy was gone was like running a marathon through a swamp. I couldn’t wait for her to come back,” Paul confesses with a guilty grin.

When she returned, Nancy felt that she had finally and profoundly given back to the country she loved. She also could not un-see or un-hear the injustices and atrocities of war that she witnessed while serving. Nancy decided to let go of her military career and instead teach engineering courses at several local colleges and universities.

However, with more and more veterans returning from the front lines in Iraq and Afghanistan Nancy recognized the need to create support groups for these wartime soldiers, “I witnessed the various levels of trauma while I was in Afghanistan. We took care of our soldiers out there, but there was little to no support available when then these vets returned state-side. Some had no homes, others no family. Some had no limbs, others no will to live. Almost all were suffering mentally,” Nancy explains.

Paul encouraged Nancy to start a small, grass-roots organization where donations could be assembled and later delivered to the hospital beds of returning wounded veterans. Nancy’s little operation quickly grew and flourished and she became somewhat of a local hero and catalyst for positive change. With volunteers in the hundreds, the couple were featured in a nationally televised news story, which caught the attention of another like-minded organization out of Virginia, The Wounded Warriors Project.

Through the years, and with that kind of momentum behind them, Nancy and Paul spent their free time raising funds, donations, and awareness for the veteran community. The couple continued working in their respective engineering fields and watched, with pride and delight, as their children started families of their own. Evie settled down and recently gave birth to a baby boy named Lincoln and JJ was newly engaged and planning his wedding to a lovely third generation Korean girl he said reminded him of his mother. “I’m not sure if JJ means it as a compliment or not, but Katie is a great girl, and we are very excited for them to start their life together,” giggles Nancy.

Nancy leads a healthy lifestyle…she eats well, walks, hikes, and is generally active. She’s never been a smoker but she will indulge in a glass of champagne or two on special occasions. Her immune system is strong and she doesn’t remember the last time she had a cold or even a headache. However, last year, Nancy started to experience heartburn and acid reflux which she treated with over-the-counter medication. When those symptoms persisted and compounded with unfamiliar abdominal pain and discomfort, she consulted a gastroenterologist who ordered an endoscopy and a colonoscopy.

To everyone’s astonishment, the results uncovered stomach cancer and a gastrectomy was ordered as the first course of treatment, followed by chemotherapy and radiation. Since there was no family history and the disease was thought to be caught early-enough, the goal was to permanently eradicate the cancer in one fell swoop. Being an Army vet and a strong-willed individual, Nancy took the news in stride, “Hey, aside from a little cancer in my belly, I feel great. I’m active, I still walk the dog every day. Paul and I go paddleboarding. I’m not even retired yet. I plan to live my life as normally as possible.” Nancy said with confidence.

And she did.

She muscled through the surgery and learned how to eat and what to eat and when to eat in order to maintain her strength. She wore pretty scarves when her hair fell out and cut it into a stylish pixie when it finally came back in. She talked about her cancer openly to the veterans she helped and the students she taught, never shying away from her reality but always coming across as hopeful and unwavering.

Ten months later, the cancer was back and after several scans and tests, it was determined that the cancer had spread to the peritoneum, making it a stage IV diagnosis. Being an eternal optimist and with the support of her family, Nancy was determined to fight the cancer for as long as it took, no matter what it took. Luckily, she was accepted into a promising clinical trial only 20 miles away from home and is excited about being closely monitored and about having a good outcome. She shares, “I have several friends who have gone through cancer clinical trials and have been around for years to talk about it. I’m hoping the same for myself.”

She’s looking forward to watching her grandson, Lincoln, take his first steps next year and to JJ’s and Katie’s wedding next summer, “I’m wearing a gorgeous lavender dress as I walk my handsome son down the aisle. And we’re having our mother-son dance choreographed to ‘What a Wonderful World’ by Louis Armstrong. So much to look forward to…” Nancy sighs as she looks at Lincoln napping in his crib.

And there is.

Nancy is not a cancer patient but rather a person with cancer. She is so many things greater than her cancer. Nancy has a life worth fighting for.

And so do you.

More than Your Cancer: Nancy’s Story2023-11-22T15:20:09+00:00

The Comeback Kids: Leal Patients, Real Stories

 

“It” is hard to come by. It is blood and sweat and tears…many, many tears…and usually not a lot of glory. It is about being courageous at your weakest and about questioning the universe. It is about being incredibly lucky but realizing that others are not as fortunate.

Every cancer patient is desperate to have it. Every caregiver prays for it. Every friend and neighbor can’t wait to hear it and talk to you about it and celebrate it. 

What is it? It is the hard-fought, hard-won, desperately yearned-for but never easily achieved – remission story.

We all want to ring that bell and drink the champagne. We all want to triumph over our cancer, to say that we squashed it into the ground, to shout that while the cancer was strong, we were stronger.

But the truth is, people with the best attitudes, a strong sense of fortitude, the cleanest diets breathing the freshest air, with harecore exercise regiments and access to the most revolutionary medicine…still die. All the time. 

For all the purposes of this piece, I will share that I was NOT supposed to survive my cancer. According to Mr. Darwin and his “Survival of the Fittest” theory, I was not one of the fittest, as it happened to be. The trifecta of a late-stage diagnosis + triple negative breast cancer + the BRCA1 mutation meant that I had the armageddon of breast cancers….the worst one…the one with high mortality rates, few treatment options (17 years ago), and if I did survive, a high rate of recurrence. 

Even my stoic, brilliant surgeon pulled my family aside and solemnly told them to prepare themselves. It was a shame…I was young…but it did not look good…the cancer was too advanced, too aggressive and the standard of care they could offer me may not be enough to stop the onslaught. Thankfully, I did not know any of that as I plugged through dose-dense chemo, then a double mastectomy, then full-course radiation, then rehabilitation, then reconstruction followed by more reconstruction and then even more.  In the end, the underdog survived to tell her tale. 

But what tale could I tell?  At that moment, in the aftermath of treatment, I did not have enough foresight to tell a story of survival. It was all tread-marks and dust, and I could barely see through the wreckage. I was a 33-year-old woman who lost her career, her fertility and her confidence on the harrowing road to save her life. I was a sliver of the strong, vibrant person I once was. Now all I had were shattered dreams and an even more shattered body. It took me years, years to realize that I did, in fact, have a story of survival to share with others. And you can read my full story here

Today though, I’d like to share a few other accounts of people who walked through the fire and have the scars to prove it. They continue to live and thrive post cancer and give hope to those following in their footsteps.

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Janet’s Story

Breast Cancer, Triple Negative, Stage II, age at diagnosis 37

Colon Cancer, Stage III, age at diagnosis 44

 

Janet, a mother of 4 and a US navy veteran was diagnosed with breast cancer and later colon cancer in the prime of her life. In spite of having no family history of either cancer, Janet did have a family history of mistrust of the medical community. Her mother, grandmother and entire immediate family seldom went for health visits and, as minorities, were generally skeptical of doctors and their recommendations. 

 

At the time of Janet’s first diagnosis, she was unemployed and uninsured and was forced to turn to a VA (Veteran Affairs) hospital in another part of her state for cancer treatment. She quickly realized that she would need to be her own self-advocate and ask questions about her cancer care. A few years later, Janet was misdiagnosed when she experienced pain in her colon. The doctors dismissed it, and it was only when she pressed them for a colonoscopy did they find a stage III tumor. Janet was assigned to aggressive treatment right then and there. 

 

There were moments of weakness, as one could expect. “Throughout all of this, my mom and husband coached me to do the right thing. When I wanted to give up, they were right there to get me back on track. My belief in God was key to keeping my sanity and pushing to the finish line.” Her faith and strong will took Janet all the way through to remission of her second cancer diagnosis.

 

Janet’s background and experience with cancer inspired her to dedicate her life to help other underrepresented communities to take their health more seriously and to press their doctors for scans and tests. She pursued a Master’s Degree in Health Science because she wants to educate minorities about their cancer treatment options, particularly clinical trials. 

 

Janet continues to raise awareness through her non-for-profit breast cancer organization and  health fairs and has sat on several university medical boards for discussions on precision medicine. “I started this community outreach because of the desperate need for simple everyday things.  My support team consisted of my husband, mom, and many close family members.  They were paying utilities, car payments, gas, groceries, and whatever else we lacked.” And now Janet and her husband use their personal funds to purchase inspirational books, colostomy bags and sometimes even provide childcare to other cancer patients. Janet is a true Diversity, Equity and Inclusion advocate and a true SHERO!

 

“My advice for other people battling cancer: You must listen to your body. You have to advocate for yourself. It could mean life or death. If you are uncomfortable speaking to medical professionals, contact someone who can help you navigate the healthcare system. 

Early detection is the best way to cure cancer. Getting information out to at-risk communities will save lives, especially knowing that the mortality rate is high throughout minority populations.”

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Regina’s Story

Breast Cancer, Stage IV with metastasis to the lung, age at diagnosis 39

 

The daughter of a single mother, Regina came from humble beginnings and found herself pregnant and a high school dropout at the tender age of 16. With no parental guidance to get her back on track, Regina decided that she would not become a statistic. She decided to earn her GED and apply to beauty school, and she did just that while raising her young son. 

 

Through sheer grit and determination, Regina built a thriving beauty salon, married the love of her life and had two more children. Then one morning, Regina experienced a sharp pain in her left breast during her meditation. Days before her 40th birthday, she received a grim cancer diagnosis. The oncologist feared the worst and told Regina to get her affairs in order. 

 

She started chemotherapy at the height of Covid, and therefore attended the infusions alone. Regina took advantage of her solitude to pray and be in tune with her mind-body connection. She knew that it would take a great deal of mental strength for her to endure the road ahead, so Regina decided to lean into positivity and gratitude. She closed her salon and focused on treatment, always staying prayerful and trying to find healing and grace at every crossroad. 

 

Regina spoke to her cancer, willing it to go away, telling it to “stop right there.” And one day when Regina was at her lowest, she experienced a gift from her oncology nurse. The nurse told her it was ok to waver, to be sad and feel fragile, “I was given permission to not to have to be strong. I was weak. My body was weak. I surrendered myself to weakness and allowed God to be my strength.” 

 

Reginia continued to stay hopeful and welcomed her infusions with gratitude, believing each one was healing her. Even when her hair fell out and her tongue and nails turned dark, she still saw the light. When the radiation burned her, she imagined herself as coming out of the embers as a fortified diamond. 

 

Her positive response to the drugs stumped even her doctors who told her that she was a unique case, and one that they had never seen before. Instead of the cancer ragravaging through her body, it had disappeared. 

 

Regina is currently 43 years old and has rebuilt her salon to be even more successful. She is passionate about encouraging patients to practice self-advocacy, to lean on others, and to keep hope alive.

 

“What I learned throughout my cancer journey is, if you look hard enough, hope is always shining through, but only 

if you choose to believe it.”

 

“Angels are always present if you choose to see them. Light is always present if you choose to feel it. Miracles do happen if you choose to receive them. I realized that when cancer comes for your body, you should not allow it to take away your spirit or your hope.”

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We all want to have that success story. After all, we are all realistically and metaphorically “dying to live” to be able to have a story of remission…a story of redemption. We all want the underdog story.  And if you have one, congratulations! Hold onto it dearly. It’s a truly amazing thing to come out on the other side of such an intense and brutalizing journey like cancer.

 

The real question for the lucky ones, may be this: what are we going to do with our success stories? How can we share them with others to give our brothers and sisters a little hope in their darkest hours? 

 

For me, it was a complicated situation. But ultimately I decided to let go of my beloved career that I had fought so hard to rebuild after my cancer. And now, I am blessed to work with cancer patients, like you, every single day. Sharing your stories, the happy ones, the sad ones…all the ones. It is a humbling privilege and one that I honor and cherish. 

 

I hope that each of you reading this can become a “comeback kid” one day and have a remission story of your own to share with others. I truly, truly do. And I will leave you with this…when my oncologist learned that I naturally conceived twins after the chemotherapy that supposedly rendered me infertile, he called me and said, “I think that God is paying you back in goodness for all of your suffering.” To which I replied, “When does a man of science start talking about God?” And his response still rings in my ears, “We talk about God when we don’t have a way to bridge the gap between what we learn in medicine and what has happened to you.”  

 

So my dear, cancer patient, remember this: Miracles do happen. EVERY. SINGLE. DAY.  

The Comeback Kids: Leal Patients, Real Stories2023-08-22T13:12:04+00:00

Leal Health, Our Story

“An informed patient is an empowered patient, and an empowered patient has the confidence to take a more active role in decisions about their care.”

Since May is Melanoma Awareness Month, we thought it was a great opportunity for us to share our origin story with our community.  

Here is our Founder and CEO, Tzvia Bader, sharing her own cancer story and the inspiration behind the launch of Leal.

“My journey with cancer started long before my own diagnosis. In 1998, my mother was diagnosed with non-Hodgkin lymphoma, and unfortunately did not respond well to treatment. It was during my mother’s cancer journey that I first discovered the vast ecosystem of clinical trials. However, by the time we found a potential clinical trial option for her, it was too late. 

Fourteen years later, I found myself in a familiar position when I was diagnosed with stage IV malignant melanoma. Fearing history repeating itself and trying to come to grips with the all too real prospect of my 3 young daughters losing their mother, I dove headfirst into mapping out my own treatment plan. Although the odds were stacked against me, I had so much to fight for and was determined to control my cancer journey.”

Working to Find the Best Treatment For Me

“I started my treatment in a large community center in New Jersey. Still, 3 surgeries later, my cancer continued to progress. I was hopeful we’d be able to find a treatment that worked for me at this center, but that wasn’t the case. I was presented with only 1 clinical trial as a potential treatment option. During my conversation with my oncologist at the time, I remember thinking, “What do you mean, only 1 trial?” With my cancer progressing and knowing that there were so many clinical trials happening around the world, I found it inconceivable—and unacceptable—that there was only 1 viable treatment option for me.

At that moment, I realized that if I wanted more options, it was up to me to help discover them. I began researching and educating myself, and I was determined that my next best option was to move my case to a larger cancer research center. At first, I felt relieved. I had put in a lot of work and was scheduled to meet with several of the most accomplished doctors who were dedicated to cancer research and who I hoped would be able to provide me with greater access to life-saving solutions. Thankfully, my new oncologist gave me 3 different options: one option was to try an approved cancer drug, and the other 2 options were to participate in different clinical trials.

At the time, I was still trying to fully comprehend the role of clinical trials in my treatment journey. The doctor explained how these studies demonstrated potentially better outcomes based on my diagnosis. Because time was not on my side, I jumped in with both feet. 

The first trial option I chose was to receive a targeted therapy drug, which lasted several months before tests showed that the disease had continued to spread. Then, I switched to a clinical trial that included treatment with a combination of a proven immunotherapy drug and a virus vaccination. At first, my cancer responded fairly well to this treatment. However, after completing the treatment phase of the clinical trial and attempting to transition back to my “normal” life, my scans showed a recurrence.

At my wit’s end, I asked my oncologist a simple but direct question: “Are you offering me the best treatment options available or just the best that this hospital has to offer?” This question led to the discovery of 2 very important points. Unfortunately, I learned that 1) I was only being offered clinical trials available through my treatment site, and 2) I had been offered only the clinical trials with which my oncologist was directly involved. It was then that I decided that I wanted to cast the widest net possible, so I began my search to uncover all options available to me.” 

Taking Charge of My Care

“Through my own relentless research, I identified a new clinical trial option and presented it to my doctor. My enthusiasm for this new potential treatment was immediately shot down when my oncologist informed me that he did not have any seats left for this specific clinical trial and preferred for me to enroll in a different one. This opened my eyes to some of the flaws in the current clinical trial landscape for patients.

I knew that I had to make another treatment decision, which led me to find a much more aggressive treatment option available through a new clinical trial. My oncologist was uncertain about this option and suggested a different approach before I resorted to this more aggressive trial. But at that point, I knew I had to make a life-changing decision: to do what I felt was right for my body and diagnosis. With that, I went forward with the more aggressive treatment.

Looking back, what is so important about this scenario is not that I chose one treatment option over another. Rather, it was the fact that when I had several options, I learned how important it was to understand what those options were and to make the decision that was right for me. It is now nearly 5 years later, and I am so thankful I made that decision.

What I learned throughout  my own cancer journey is that the way in which patients gain access to advanced cancer treatments, through clinical trials, is completely broken.

Understanding ALL treatment options is critical for people to own their cancer journey, as I have been fortunate enough to do. After spending 20 years building technology companies, it is clear that AI offers the only viable path to empowering every individual on the planet with the knowledge and tools they need to receive the best treatment possible. And so Leal Health was born.”

Building a Technology that Accelerates Access to All Advanced Treatment Options for All Patients 

“The future of healthcare means creating a true partnership and collaboration between patients and their doctors, whereby the patient offers more direct input about treatment options and can leverage technology like AI to learn more about all available therapies that could lead to significantly improved outcomes.

In the same way that you would never buy a home through a real estate agent without first seeing the house yourself, doctors and the healthcare industry at large simply cannot determine the best treatment plan for a particular patient without first listening to the patient’s thoughts, desires, and feedback. Patients need to be heard, because it’s their cancer diagnosis, their treatment and, ultimately, their decision on the best course of action to take.

By providing all available treatment options to patients – powered by a technology that is without bias or Big Pharma influence – Leal provides patients with the necessary tools to be active in, and comfortable with, their treatment plan. We designed the platform to use AI to identify and generate personalized treatment plans, enabling patients to own their journey. The information is curated for patients in easy-to-understand language and a support team is in place to help guide patients every step of the way.

Additionally, oncologists can obtain quick, easy access to all available clinical trial information, enabling them to deepen relationships with their patients and offer better clinical outcomes.” 

Recognized by TIME magazine as one of “The 100 Best Inventions of 2020” and named an honoree in the AI and data category for Fast Company‘s “2021 World Changing Ideas” Awards, Leal has thousands of cancer patients on its platform from across the U.S. and has already made 4.2 million clinical trial matches for people with cancer.”

What to Know if You are Considering Joining a Clinical Trial

“Before my own cancer experience, I wish I had known that I had the option to participate in clinical trials, even before moving forward with my initial standard-of-care treatment. After my diagnosis and a lack of direction from my first oncologist, I was determined to find a better alternative to what I was given. It took a lot of self-exploration and research to truly understand the clinical trial landscape. In hindsight, I wish I had known the complexities around finding the right option to fit my specific diagnosis.

During the already difficult time of navigating a cancer diagnosis, I found out how important it was to recognize that the key to treatment may lie beyond the standard of care. I learned that you must be willing to seek other treatment options, such as clinical trials, to ensure you are aware of all potential treatment options available to you.

Beyond this, I believe it is important for people with cancer to know that participating in clinical trials can potentially serve as a life-saving treatment for you as the actual participant, and also help to further advances in treating cancer that could help others in need.”

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Tzvia Bader is a stage IV Melanoma survivor and the CEO and co-founder of Leal Health, an AI-powered decision-making platform that connects cancer patients to advanced treatment options and helps to accelerate clinical research timelines. 

Leal Health, Our Story2023-08-25T14:10:32+00:00

Cancer, Party of One

My Fellow Cancer Patient,

 

Sometimes it’s lonely – having cancer. It can be difficult to witness the world continue to rotate at its normal, steady pace, when you have cancer. It can be insufferable to sit in traffic or be stuck in line…don’t they know, you don’t have a minute to waste? It can be painful to watch everyone around you laugh with carefree abandon – what’s so damn funny? Don’t they know I’m fighting for my life over here? 

 

Everyone who has walked in your shoes, days, years or even decades ahead can relate to the sense of loss, of loneliness, of feeling left behind, of feeling strange about new emotions, of being uncomfortable with changes in your body that come with cancer treatment, of being disappointed, angry, terrified, exhausted and everything in between.

 

So I’m here to tell you that You’re. Not. Alone. 

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You’re not alone if you become angry and a little bitter.

Having cancer can feel like a lonely existence.a try Like everything and everyone is keeping on keeping on while you are stuck in this black hole, this vortex of doctors and needles and biopsies and tests and nuclear medicine, oh my! You didn’t even know what a pet scan was a minute ago, and now all you can do is obsess over a clean pet scan result. 

 

Friends are going to work and making summer vacation plans. And you’re frozen in fear about the real possibility of not being able to attend your daughter’s next birthday party because you just don’t know how much time you have and time has now become a real variable and your most valuable commodity. That’s a lot and more than enough to make you angry at the world. 

 

Let me tell you, anger is precisely the correct response to feeling like you’re being jipped out of life…out of time…out of your own existence…that your kids are possibly being jipped out of a parent or as in my case, my parents being forced to watch me, their child, suffer after already losing their son, my brother, earlier in life. Fair? No. Not by a mile, so if bitterness creeps in from time to time, it’s perfectly expected.

 

You’re not alone if it’s summer but you’re freezing.

Losing your eyelashes and the hair on your head, on your arms, on your legs, in your nose and south of the equator leaves you feeling unexpectedly cold. A light breeze can be enough for your teeth to start chattering or your nose to start running or your eyes to water. It’s normal to start leaking or shivering at any given moment. I always kept tissues stuffed into my pockets, a cozy hat in every room and an extra hoodie in my car. 

 

You’re not alone if your reflection in the mirror is a little different than the one you remember.

Chemotherapy lowers your white blood cell count and weakens certain structures, like your nails. Your nails might become brittle, discolored or develop ridges called Beau’s lines. Chemo and radiation can cause changes in your salivary glands or in the lining of your mouth which can upset the balance of bacteria and lead to infections, mouth sores or even tooth decay. Also, some chemotherapy agents can cause hyperpigmentation in skin, leading to dry, itchy or darkening skin tones. 

 

I suffered from mouth sores, grayish skin, wiggly teeth and dark toenails. Not a pretty site, but we were trying to save my life, after all, not my toenails, so I kept it in perspective as much as I could and had those suckers painted in pretty shades of pink.

 

My recommendation is to slather on the sunblock, paint your nails with hardening nail polish, and make sure to have excellent oral hygiene. The good news is that most of these side effects affect a small portion of cancer patients during treatment and are usually temporary.

 

You’re not alone if you wake up at night in a cold sweat.

Fear sneaks up on you when you least expect it. Sometimes when your body is at rest, it starts to purge and you find your heart pounding unexpectedly or your hands shaking feverishly or your mind racing in circles, or your body suddenly trembling in the middle of the night in panic. 

 

I remember sitting quietly, calmly on the bus, reading a book, and my heart just pounding out of my chest. I remember lying awake in bed, deep into the night, contemplating all the what-ifs and mourning all the could-have-beens.

 

It’s ok to be scared. It’s ok to feel those feelings. It’s ok to cry. It’s ok to mourn. Give yourself permission, space and grace to sit with yourself and reconnect with your emotions, no matter when they sneak up on you.

 

You’re not alone if your favorite perfume/cologne makes you nauseous.

Certain types of cancer treatments can affect your sense of taste and smell. Don’t be alarmed if your sense of smell becomes hyper-sensitive during or after treatment, or if you get a metallic taste in your mouth. 

 

Seventeen years after my cancer treatment, I still cannot eat a turkey sandwich with cranberries because I had it for lunch after my third chemo infusion. Nor can I wear my favorite perfume from that time, Channel’s Mademoiselle as it brings me back to a time and place that I do not recall fondly. Always preferring vanilla to chocolate ice cream, I craved chocolate and nothing but chocolate during chemo…and ate it in obscene proportions. After treatment, I went back to vanilla and haven’t budged since. 

 

You’re not alone if your stomach feels like a hot air balloon at take-off and you’re passing gas faster than a run-away train. 

Excessive gas, bloating and abdominal pain, especially for colorectal and stomach cancer patients, are common symptoms. Also, certain foods, beverages, medications and even behaviors can contribute to gas build-up. Try these tips to minimize your discomfort:

 

  1. Avoid carbonated beverages
  2. Avoid dairy products such as milk, cheese, or yogurt
  3. Avoid gas-forming foods like broccoli, cauliflower, brussels sprouts, cabbage, corn, turnips, onions, peas, peppers, radishes, garlic, cantaloupe, watermelon, apples, avocados, beans, lentils, and nuts
  4. Avoid behaviors that can cause you to swallow extra air. Eat slowly, drink liquids in small sips and toss all the drinking straws in your house

You’re not alone if you have used your “cancer card.”

Ah…the infamous cancer card. The one we secretly keep nicely tucked in our back pocket and feel the right, the permission and, yes, the clearance to use at our own discretion, in appropriate moments but even more-so in the inappropriate ones. 

 

It’s the proverbial “get-out-of-jail” for free card that gives you leverage in low-stakes situations like getting the last slice of pizza or or negotiating dinner reservations or winning an argument with your spouse. I mean…what’s he going to do? Stay mad at you for buying those shoes?….You have cancer after all! Using the cancer card can bring a little levity to a serious situation or could even help you get out of hot water as it did for me.

 

One morning, I was running late for my PET scan. A nightmare scenario of complete bumper-to-bumper gridlock on the George Washington Bridge followed by some Mission Impossible-style driving down the FDR in rush hour traffic. It wasn’t looking good – we were surely going to miss the appointment. Now, if you know anything about PET scans, you know that 1) they are very progressive tests that are also quite expensive and not always covered by insurance companies and 2) you have to be at your appointment ON TIME because the radioactive isotope being injected (to determine any spread of cancer) becomes ineffective after about one hour and the PET scan cannot and will not take place. 

 

So if your insurance company clears it and you get the appointment scheduled, you had better be there on time, sucking down that canister of barium with a smile on your face…like it is a damn pina colada!

 

I looked at my husband and said, “Take the left turn on Lexington,” fully knowing there was no left turn allowed, at that hour, as clearly marked in red letters on the big sign in front of us. “Take the turn!” I shouted. And he did. And we promptly got pulled over by a handsome NYC cop, with sirens and lights, who had all the time in the world to give us that slow, painful ticket. 

 

I looked at him dead in the face and said, “Sir, I know what we did was illegal, but I have cancer.” Ugh, I said it. I did. I said it! Damn it! I used the cancer card. Cringe!!!!! “I have 

c a n c e r,” I continued in haste, “And I’m very late for an important test at the hospital.” 

 

He looked at me and said, calmly and slowly like he was the sheriff in a Western,  “Ma’am, I’m sorry but I don’t know anything about cancer. I don’t know anyone with cancer. I don’t know what cancer even looks like or…” I stopped him right there. “Sir! THIS is what cancer looks like” I said as I popped off my short, dark wig and held it in my right hand, hovering above my bald head. WHAT? Did I just really do that? Yes, in fact, I did. 

 

My husband and the cop both stared at me in horror…in disbelief…in silence. “This is it,” I thought. Don’t – say – anything! The next person to speak will lose…first rule of negotiation. So there I was in a stare-down with the cop, and thankfully, after a long pause, he broke first. “Ok ma’am. I’m going to let you go but I must give you this ticket. However, show up at the court date next month, and I’ll dismiss it. You’re free to go, and good luck.” 

 

I not only made it to my PET scan in the nick of time, but the cop kept his word and dismissed our ticket. I retired my cancer card after that episode. Didn’t want to press my luck. No sir-ry, I was one-and-done!

————–

 

So if you’re ever feeling like you’re a “party of one,” remember that you are in good company. We have been where you are, and sadly, others will follow. Cancer is actually a sisterhood, a brotherhood, a community of lonesome, lonely loners who found one another in the worst of times but also had enough self awareness and foresight to value the connections made, the experiences shared, and the hope forged along the way. Welcome to the club, my friend.

Cancer, Party of One2023-08-22T13:12:14+00:00

Intimacy & Cancer: A Personal Affair

Intimacy. Finally…there it was… the real victim of my cancer treatment. The honest-to-goodness casualty of the brutal side-effects inflicted by the cancer drugs that were saving my life but consequently destroying anything and everything else in their path. My confidence took a hit when my body started to fall apart and the strong, assertive, accomplished young woman in the mirror turned into someone I didn’t know and didn’t want to see. She was pale and weathered…with a chubby face and exhausted eyes, no hair or eyebrows, no breasts, no conviction. But I certainly didn’t want to pity her, um, me. And didn’t want others to pity her either. I let the disconnect between the memory of who I once was to the reflection I saw in the mirror seep into every corner of spirit and consciousness. 

 

Unknowingly, I had built a tall invisible fortress around myself, surrounded by deep moats and fiery dragons and it was impossible to let anyone in…particularly my closest and dearest. Them, especially, I wanted to protect from the actual horrors that were sprinting through my psyche and unleashing their poisons throughout my body. It was during the darkest moments of terror…when I feared for my life and despaired over the wreckage that would be left in the aftermath of my death…that those walls went up higher and the intimacy and comfort, that I likely needed, was shut off from the world and most tragically from my family. 

 

So, when my husband suggested a romantic getaway to Florida after my chemotherapy and double mastectomy, I was somewhat surprised but mostly horrified or tortured over who would join him on the trip…the woman he married or the fragmented woman that looked back at me from the mirror every day. Somehow baldness, chemo fatigue and an amputated, scarred-up chest did not equate to an amorous vacation in my mind. 

 

Finally, my mother convinced me that fresh air and new surroundings might do me some good, and so I consented to go. In preparation, I forced myself to shop for pretty lingerie, luxurious scents and make-up that would brighten my grayish skin tone. I convinced myself that this could be a lovely getaway in spite of my bloated face, black toe nails, brittle teeth and crippled self-confidence. Even though it was mostly out of my control, I was ashamed of my appearance. I was only 32 years old but, in fact, I felt twice my age and looked like a sick, frail woman who was playing dress-up. Which I was. The last thing I was in the mood for was trying to be ravishing, desirable or, ahem, sexy. 

 

So I did the next best thing. I decided to “fake it ‘til I make it.” I packed all of the lovely lacey nighties, doused myself in Issey Miyaki perfume, applied some pink lip-gloss and put on my cutest wig and the bravest face I could muster before boarding the flight. It was an exhausting feat but I was hoping to dazzle (or maybe just even charm) my still-somewhat-new and very handsome husband with the best version of myself I could come up with. One that he hadn’t seen in over six months…the one I no longer saw in the mirror. 

 

And guess what! It worked. We spent the days holding hands during long quiet walks on the beach, giggling and blowing bubbles in the sudsy bathtub, giving each other foot rubs on the balcony that overlooked a grove of palm trees, and chatting intimately during dreamy dinners underneath moonlit skies. The weather was glorious and the air smelled like freshly cut flowers dancing in the salty breeze from the ocean.  

 

Everything seemed to wake up within me…slowly and then all at once. 

 

My skin began to tingle in the morning sunshine. My body seemed to become more coordinated as I began to take faster, bolder strides. My mood was lighter and I surprised myself when I laughed uncontrollably at something silly my husband said at the gas station. By the time my wig and lingerie came off in the bedroom, most of my insecurities had melted away. Before our trip ended, I took one last long look in the mirror in the light of day. I saw both of us…me and her, and I felt surprisingly grateful. Grateful because I was finally able to see ME again. And grateful because she was strong enough to carry me when I was lost and terrified. She was actually a badass warrior and not the frail, broken shell of a person I mistook her to be. The reconnection and self-awareness I felt, with myself in that moment, realizing that I had survived the unimaginable was truly one of the most humbling and stirring moments of my life.

 

And I finally understood that even if I felt undesirable and lacked desire, what I actually truly needed and had categorically ignored and denied myself during my treatment, was intimacy. 

 

Intimacy in the way we connect with others and with ourselves…in words, in touch, in smiles, in small gestures. Intimacy in the way there is a silent knowing when looking at someone you love…all the secrets and words said and unsaid that are yours and yours alone. Intimacy like letting someone who cares about you empty your surgical drains and clean your kitchen before giving your daughter a bath. Intimacy like when you laugh with someone at the same time at something that’s not even particularly funny but just ridiculous or order meals off the menu, intending to share, knowing what the other person will like. Intimacy like when you need a manicure but you’re so sick you can’t leave the house and your friend shows up unannounced to give you one. Intimacy like when it’s time to leave a party and your person looks at you across the room and gives you that wink and a nod and you instantly know it’s time to go. Intimacy like when you’re going through cancer and you’re scared out of your mind and someone next to you grabs your hand to let you know they won’t leave you. And on and on and on and…

Intimacy & Cancer: A Personal Affair2023-08-25T14:10:49+00:00

10 Things NOT to Say to a Cancer Patient

Dear Friend, Caregiver, Loved One and Perfect Stranger,

Not to overstate the obvious, but people with cancer get tired, exhausted, simply depleted…physically and mentally and emotionally. Even their hair hurts. That kind of supreme fatigue can lead to anger, sarcasm, and even passive-aggression. Cancer patients sometimes lash out and bite the heads off of their well-intentioned friends only to immediately regret it in their next breath.

For example, after my double mastectomy, I offered my sister the jello sitting on my hospital tray. I wasn’t planning to eat it but when she accepted, I screamed at her for always taking hand-outs and fat-shamed her…over a cup of jello. Irrational? Yes, absolutely and also hurtful. 

But the roller coaster of feelings and unreasonable thoughts are all part of a cancer journey. And each person has their own journey. So if a loved one is going through cancer, buckle up for the ride, check for loose objects in the cockpit, and most importantly do not take things too personally.

And now for your public service announcement, here are the 10 things you probably do not want to say to someone with cancer:

    1. “You’re SO strong.”
      Hmm, well let’s see. I’m only strong because I HAVE TO BE. Being strong is the only option I was given, considering that I’m fighting for my survival here. What’s the alternative…to roll over and die? Ugh…I wish I were stronger most days.

 

    1. “You’re lucky that they have treatment for your disease.”
      I mean, I guess. If you consider me lucky because people are cutting off my body parts, stabbing me with sharp objects, burning me from the inside out with radiation and poisoning my veins with chemicals used for extermination in WWII…then maybe I am the luckiest! You’re a genius! Hate you. Love you!

 

    1. “Cancer loves sugar. So you probably shouldn’t eat that. Have you thought about changing your diet?”
      Yes, I have thought about eating clean and green my whole adult life. But if it didn’t happen before the cancer, I don’t think it’s going to happen at this moment…unless you want to hire a private chef for me. No. Right now in my life, all I need is comfort food. So you can go change your diet, fatty – you have ice cream for breakfast! Now go away so I can eat my donut.

 

    1. “You should really talk to a professional.”
      Oh, you mean I should talk to a therapist…like lie down on a couch in front of a perfect stranger to help me dissect my imploding thoughts? Talk all those feelings out? Talk about the fear, the anger, the hopelessness, the despair, the sheer terror of it all…them feelings? Well, I actually wouldn’t know where to begin. My feelings are like a shredded feather pillow…the feathers flying all around the room, and I’m trying to catch them and stuff them back into a pillow with HOLES IN IT! Every medical procedure and ache and pain rips another hole in the pillowcase. So maybe I’ll wait until the dust settles a bit. Maybe you need to go talk to a professional about all the idiotic things you say to me.

 

    1. “You’ll be fine – you have such a positive attitude.”
      Thanks. But not really. I’m usually quite hostile in the quiet moments. And if attitude really mattered, why did I get sick in the first place? I was a pretty positive person before all of this happened. At the moment, my attitude about cancer is pretty crummy. So where does that leave me? And why don’t you just leave me alone with all your wisdom?! But wait – don’t leave me for too long…I need you to remind me how positive I am in spite of everything.

 

    1. “You should simplify your life.”
      My life is pretty simple. I wake up. Go to the doctor, get stabbed a few times with needles. Get weighed, get infused, get sick. Go home, go to bed. Wash, rinse, repeat.

 

    1. “How are you?”
      If you have to ask, then don’t. Because if you really cared, you would already know how I am. Go away. But please come back. I’m just having a really bad day.

 

    1. “Call me if you need anything.”
      No, you call ME, damn it. I’m not going to ask you for help. I’m not going to call you in a moment of weakness asking you to peel me out of a chemo haze, or ask you to change my drains, or ask you to bring me a hot meal that consists of more than the two ingredients left in my fridge. I expect you to read my mind and figure out what I need and then just do it. I can’t think for myself, so I need you to think for me.

 

    1. “You’re going to come out of this a much better person.”
      Nope. Nah. No way. Don’t think so. I was actually a lovely person before the cancer…before the runaway train derailed my life in about 1000 different directions. I was fine. I was happy. Now, I have less patience for nonsense, less tolerance for ineptness and zero fucks for people who are wasting their lives. I’m filled with indignation for complaints and useless people saying useless things – like what you just said. Go! Now! Run…before I unleash almighty hell and rage upon your soul. But please come back.

 

  1. “It can always be worse.”
    Yes, thank you for reminding me that death is always my other option. Now go away. But don’t forget about me. It can only get worse if I have to endure this alone. 
10 Things NOT to Say to a Cancer Patient2023-08-22T13:12:31+00:00

Glenn Sellnow’s Cancer Story

In 2008, I was having some problems with pain in my rear end so I went to the walk-in clinic to investigate the cause.  The doctor looked over the situation and then asked me if he could bring a cancer surgeon into the room to look at it.  This question didn’t thrill me but I said yes.  The cancer surgeon tried a painful procedure right there on the spot, but I said I just could not take that much pain.  They referred me to another surgeon for a biopsy.

I had the biopsy done and was anxious to get the baseline results.  Normally the medical system releases all information to a patient via internet access as soon as possible.  Naturally they don’t do this with cancer because they seem to want the doctor to tell you in person.  I prefer to know things asap so I harassed a nurse by phone until she got permission to tell me the news.  It was not good news.  Cancer.  I remembered a verse from the Bible “Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; Thy rod and thy staff they comfort me.” Psalm 23:4 KJV  That was the verse I needed.

Now it was time for endless procedures, operations, doctor visits and infusions for the years that followed.  I needed the Bible verse more than ever for these entertaining activities.  I had good doctors with the best of care.  I couldn’t help thinking of all the people living in third world countries without access to the care I was being given.  It brought me great sadness that so many people were suffering even worse than me.  

Some people have said that I have a good attitude.  Perhaps in some ways I do; however, I have moments when my thoughts would frighten those very same people.  I know that I have not reached a state of perfection.  I have yet to meet anyone that has and I will never be that person on this earth.

The first surgeon who operated on me gave my family a pep talk after the surgery while I was unconscious.  He said I probably wouldn’t live more than five years.  He may have been accurate but he was also a jackass.  I would like to live longer just to prove him wrong.

I was given the standard treatments for cancer:  surgery, radiation, chemotherapy and immunotherapy.  I didn’t have any bad reactions but there came a day when my oncologist said that I had a mere six months left to live.  Naturally I got second opinions just in case my oncologist was a dud.  The other oncologists said the same thing. Bummer.

It seems that oncologists have some difficulty keeping up to date on all the cancer trials taking place.  They are busy people and cancer trials do not seem to be organized into a common database for easy review.  Facebook had an “ad” for something called Trialjectory so I decided to take a look at it.  I had initial skepticism because I figured doctors would have the same information.  

Trialjectory has a fill in the blank questionnaire for the patient’s condition and it produces a list of useful cancer trials going on around the country.  Software can be a good thing when it does its job.  This would be a good application for some A.I. programming like they are now doing at MSOE, the college I attended eons ago. 

One of the trials at the NIH seemed to match me so my doctor referred me.  Initially, it appeared that I would be accepted into the trial.  Unfortunately, I received a rejection email just as I was packing my travel bags.  Double bummer.  

I found a second trial through Trialjectory that was considerably closer and would not require so much travel.   I found out my oncologist could duplicate this phase 3 trial at my current hospital.  Yea!  I don’t know how much this trial will extend my life.  We all die eventually but I don’t want to rush the process.  This trial might make a difference, so it’s worth a try.

Currently I am working with my Oncologist to determine the best version of the chosen trial.  Doctors are not God and they simply don’t know everything, and they are not expected to.  A trial is designed to prove the best treatment to pursue.  There is not any guarantee that it will improve your life span so I’m prepared for any outcome.  Everyone eventually dies.  So I have a back-up plan.  As a former electrical engineer, I always make back-up plans for all situations.

I personally believe that God controls our life’s destiny.  We can make choices that affect many outcomes and I would definitely like to prolong my life.  I believe that Jesus has given us a path to eternal life and that this current life “is short and sometimes full of trouble.” Cancer is not the worst thing that has ever happened to me, but, again, I would like to prolong my life just to prove my doctors wrong. 

And a parting word to my fellow humans. I suffered from Crohn’s disease which probably contributed to my getting cancer.  My advice is to get checked early and often for cancer if you have any chronic disease. 

Glenn Sellnow’s Cancer Story2023-08-22T13:12:42+00:00

Anatomy of a Scar: A Reflection

Scars. They reflect the roadmap of our lives. No matter if they are beautiful or ugly….they’re ours. Meaningful and sometimes tragic reminders of the battles fought, lives produced and everything in between. I have nearly 30 individual scars on my one body – sixteen of them acquired only at 2 weeks of age when, as an infant, I fought a raging staph infection that nearly took my life before it even began. 

Sixteen reminders of my survival. Not pretty, just real. Real in every sense…my body was attacked, my body fought back, and now I have the proof, spread across my backside. Not in any particularly organized pattern, just scattered scars where small tubes were inserted to let the infection ooze out of the infected flesh. 

At two weeks of age, and living in the former communist country of Moldova, under Soviet rule at the time, medicine was socialized. What that meant is that unless your job was to produce something…a newspaper, a street sign, a widget of sorts, you did not get paid well in your profession. Doctors were criminally underpaid and under-valued and therefore often underperformed, as a result. Bribes for better treatment were the norm, so patients often came to hospitals armed with an added incentive for the doctor that was to treat them…cash or bottles of booze were commonly presented to doctors at medical appointments.

According to my parents, the story goes something like this. When I was a few weeks old, I had a little sore on my lower back. When the visiting nurse came to our home, she punctured the small blister and gave me an even bigger infection that caused my fever to skyrocket. An ambulance was called and I was rushed to the hospital where they discovered an aggressive staph infection ravaging its way through my body. 

During the two weeks I spent in the hospital, my condition. After the bribes stopped working and doctor visits to my hospital room slowed down, my parents were told that they should go home. That they should leave me in the hospital…that I was not going to make it through the next night. That’s when my father flipped a switch, stormed a medical conference taking place in my hospital, and dragged out 3 doctors who would end up saving my life. To my good fortune, my father was strong-willed, but so much so that my official medical record had this note in it, “Be careful! The father has a bad temper.”  So I survived, and eventually my mother and father brought me (and my sixteen little scars) home and then a few years later to a new beginning in America. 

Throughout my life, those scars were always with me. Something I had to explain to friends at cheerleading camps when changing into our uniforms…Something I had to clarify when asked why I preferred high-waisted bikinis rather than the skimpy ones everyone was wearing in the ‘90s. Something I had to acknowledge in my intimate relationships as well. But they were a part of me…I did not know life without them. 

When I was in my early thirties, I was diagnosed with advanced breast cancer, and genetic testing showed that I carried a mutation that would, more than likely, cause my cancer to return in my lifetime. Stage III, triple negative breast cancer with the BRCA 1 mutation. I hit the jackpot – the most aggressive breast cancer was playing house in my body. Hard situations sometimes require even harder measures. So we went ballistic…our counterattack included dose-dense chemotherapy and full-course radiation as well as a double radical mastectomy. Taking the most aggressive measures available was hopefully going to also increase the chances of long-term survival. It was touch-and-go in those dark days and big decisions needed to be made quickly. We weren’t trying to save my breasts…we were trying to save my life. 

At that time, the nipple-sparing procedure was not an option for me, so off everything went. I closed my eyes and surrendered to some of the most capable hands in New York City. Because of the location of my cancer, the surgeons had to scrape down to my chest wall in order to make sure they got rid of every microcell and cancerous fiber. They needed to clean house! And they did just that, leaving a warzone of annihilation and destruction across my chest.

The scars were severe and, while expected, were still difficult to adjust to. It was gruesome. The surgery and the scars hurt more mentally and emotionally than physically. And not because of vanity. But because they were reminders that, if it were not for modern medicine, I would not be alive…that in order to live, I had to virtually amputate a part of my body. Reminders that I was somehow damaged, less than, unwhole, weak.

As opposed to the scars left on my back from my infant staph infection, these new scars were on my chest. Everytime I looked in the mirror I was reminded of my dance with death and how I was forced to deal with my mortality. I could not run away. I could not even turn away. Every shower, every changing of clothes, there they were…in my face, wickedly staring at me – permanent reminders of my own personal defectiveness. And worse, I could not unsee the horrific expressions on the faces of my family and my dearest friends…stepping forward to change my bandages and empty my drains, meeting my scars for the first time. It was as if they were seeing a nightmare unfold in real time. They couldn’t hide their shock, and seeing the pain on their faces was worse than the physical pain I was feeling. 

The anguish of loss was present and I was reliving my cancer each day. Every day. How can you put something behind you when it’s staring you in the face? The anatomy of my scars became more than physical tissue being rebuilt…it was the revolving thoughts racing through my mind and in my heart and in my core. 

They say time heals all wounds. But the scars…those remain. Two years after my cancer and after countless reconstructive surgeries, the scars were still there…red and angry. My emotional state was resignation and concession. I was resigned to living with the collateral damage the cancer treatment left. Weakened nails, brittle teeth, lymphedema in my arms, those treacherous scars on my chest and the visceral scars on my psyche. But the one thing that I could not bear was the infertility caused by the chemotherapy. That left me reeling. 

And then a miracle happened.

After a spiritual trip abroad with my husband, I realized that I was pregnant. Spontaneously pregnant, against all medical odds and probabilities. And not only that, I was pregnant with twins, if you  can imagine. For the first and only time in my life, I was pregnant, and let me tell you, it was the most wondrous experience. I finally felt that I was doing something important, something bigger than me and much bigger than my cancer and that initiated my emotional healing process. 

After nearly dying from cancer, to have the ability to grow new life was just miraculous, in every sense of the word. My mental scars began to take the back seat and fade against the possibility of bringing life into the world. Something I was told would never happen.  My physical scars were suddenly no match for my growing belly. Now when I looked in the mirror, I was in awe of my own body…what it went through and what it was able to do in spite of the destruction it had endured. 

And when the doctors told me that I would need a c-section and I thought about adding yet another scar, I was proud to do just that. Because I slowly began to realize that every scar and imperfection was fought for and earnestly EARNED. And that my scars were my badges of survival…reminders of the moments and experiences of achievement…something to honor and take pride in. 

The Japanese art of Kintsugi, where objects are shattered but then reassembled, the cracks painted in gold, teaches that broken things are not something to hide but instead to display with pride and dignity. The scars, my scars, your scars, they all tell an intricate, authentic story of the beauty, grit, and strength in the broken places. And we all have broken places, visible or not. In spite of everything, you are not only whole, you are bold and gold in the cracks that once were. They are yours….you earned them, just like I did. 

My favorite scar is my c-section scar because it lives as a precious souvenir of the two remarkable lives I created. It’s also one of my smallest scars, and I actually sometimes secretly wish that it was bigger because of the enormous story that it tells. My story. And now, I would love to hear yours!

If you have a scar story you would like to share, please click HERE. 

Anatomy of a Scar: A Reflection2023-08-23T17:13:35+00:00

The Girlfriend’s Guide to Breast Cancer, Chapter 1: The Moral Is…

Girlfriends and Boyfriends, Let’s talk about breasts!

Bosoms, boobs, breasts, chest. We all have them…in one form or another. For some, they are nothing more than a body appendage we were born with. While for others, they are a vital part of our femininity or masculinity, an identifying factor of our emotional identity and sexuality. And still for some, they serve the most primal purpose of all…that of feeding our children. Or, really, could be all of the above!

Yet for 1 in 8 women and 1 in 800 men, our breasts are also ticking timebombs – and I was one of them…one of you. 

In my early 30s, without notice or warning or even so much as a minor gut feeling, I found myself in the throes of advanced and clinically aggressive breast cancer. BOOM! It hit me like a freight train that didn’t even try to slow down at the station. I quickly found myself fighting for survival while also trying to navigate through my new daily reality of lab work, infusions, needles, nurses, big words, bigger decisions. Wash, rinse, repeat.

In my case, the cancer didn’t hurt. I found it strange to be so close to death but feel no pain. I actually didn’t feel a thing. But going through the chemo, the surgeries, the radiation and the countless scans and procedures, presented other challenges. So in the spirit of sharing and caring, here are a few insights and thought-starters…from your girlfriend, who’s been there.

Insight #1: Girlfriend, a bad-hair day is better than a no-hair day!

For some women, thinking about losing their hair is even worse than losing their breasts. I get it. On top of feeling sick from the cancer drugs, your hair starts to abandon you as well. When chunks of my hair started to find their way onto the floor and the kitchen table, I shaved my head in the garage. It was both tragically sad and empowering all at once. But I felt strong…like GI Jane. It was an act I did FOR myself and not TO myself. It was something that I did to prepare myself for war!

Not everyone loses their hair from chemo. However, if you need to, picking a wig can be a delicate matter. You may want to choose a wig or a fall that resembles your natural hair color and style. Or you may want to just go bananas and try out fun options and colors. 

In my case, I had one great quality wig and then six or seven more just for fun. Each had her own name and persona, and I felt like I could escape into a new realm based on the wig I was wearing that day and the story I wanted to live in at that moment. 

My wigs ranged from long and dark (“Erica”) to short platinum blonde (“Francesca”) to strawberry pixie (“Jane”) to a black severe bob (think “Mia” from Pulp Fiction) and everything in between. There was a “Samantha,” a “Carrie,” a “Charlotte” and a “Miranda. Yes, my Sex And the City friends, you read that right!  With so few decisions we cancer patients have, choosing my wig each day gave me back a sliver of my own liberty and independence. 

Francesca was the sophisticated wig who joined me in the city for dinners with friends. She liked fine food and dirty martinis. She looked like a wig and therefore required a lot of confidence to pull off. Francesca was saved for the good nights when I had strength. I felt most like myself in Erica, but since I really didn’t feel much like myself most of the time, she made limited appearances. Erica was really just reserved for special occasions or dates with my husband. Mia came out when I was feeling extra sassy and often had a dark, morbid sense of humor.  But in the moments when energy escaped me and I was in recovery mode, a soft cashmere hat was my go-to. When I felt up to it, the wigs were an escape…chance to be creative and have a little fun when my body and mind and spirit aligned. 

The Moral Is: Fake hair, don’t care! Just make sure it’s on straight.

—————–

Insight #2: Girlfriend, having chemo does not mean that you will be hugging your toilet!

Vomiting sucks! After one outrageously indulgent night of college partying during my freshman year, which almost landed me in the emergency room and the university’s security office (not in that order), I decided that I would NEVER vomit again. My brain was seared with the debaucherous memories from that humiliating night, and I was determined to keep my word.

So, you can imagine the horror racing through my mind when I realized that I would likely experience severe nausea and vomiting from the dose-dense chemotherapy drugs I would be taking. I discussed my concerns (more like nightmare scenarios) with my oncologist, my nurses, the finance lady, the front desk secretaries, and the parking attendant. Anyone and everyone who encountered me at NYU knew my irrational fears about vomiting and kindly humored me by hearing me out each and every time I started to rant.

Luckily my oncologist took me seriously and prescribed anti-nausea medications before and after each chemotherapy infusion. My neurosis aside, apparently most cancer patients get these medications to minimize side effects. I was nothing special. But I am very happy to report that, to my great relief and even greater relief of my friends and family, I did not feel nauseous or vomit even once during my four months of chemotherapy. Not even once!

The Moral Is: A puke bucket also doubles nicely as a fruit bowl.

—————–

Insight #3: Girlfriend, breast cancer isn’t funny, but laughter is the BEST medicine!

I discovered that having a sense of humor about life’s challenges is an effective coping technique. 

As my cancer treatment progressed, I found humor in morbid things and moments that could seem macabre or dark to others. Like that time a teenage kid asked me in Costco about “the weird pipe” attached to my arm (my PICC line). Without missing a beat, I looked him, dead in the face, and sternly replied. “It’s for chemotherapy. I have CANCER.” His mother looked at me like I just shattered his innocence, and dragged him away without another word spoken. “Well, shithead,” I thought to myself, “…next time think twice about what you ask a stranger.” I was howling inside. So satisfied with my quick reaction. Probably not appropriate.

Or the time that I reached out to mindlessly touch the needle of the infusion syringe  – only to meet the earth-shattering screams from my oncology nurse, Peggy. “DONNNNN’T touch thaaaaat!” She yelled so loud that other nurses burst into my room and the friends sitting next to me looked as if they had been shot out of a cannon. When we all caught our breath, Peggy explained that the chemotherapy drugs were so toxic that one drop would literally slough the skin and flesh from my finger. Yes, she used the word “slough.” What in the mighty hell!?! “So, you’re pumping me with this poison for hours each time, but if I touch it for even one second, my flesh will melt away,” I asked Peggy in all sincerity. “Exactly!” was her response. After one beat of dead silence, the entire room erupted in laughter and disbelief. This time we howled out loud and while there was nothing funny about the situation, the absurdity of the moment was absolutely hilarious. Again, not appropriate.

Or the one time my very handsome, very successful friend, Steve, surprised me with a visit to the hospital room during an infusion. He grabbed the bedpan sitting next to me and looked at it quizzically. The room fell silent and all my girlfriends held their breath. Then he slowly looked up at me and I wanted to die from embarrassment when his gaze met mine. Because this was my college friend Steve who knew me when I was in my prime, in my glory…my friend Steve who I had shared years of laughs and crazy good times with…now looking at me, bald and sick, in the chemo ward, and holding my bedpan! The moment of tension was suddenly broken when he blurted out, “Hey, can I wear this thing as a sombrero?” Oh, we roared with laughter so loudly that I forgot my own situation for a minute and instinctively shushed everyone in the room, “Hey guys,” I said, “…we need to be a little quieter, there are sick people in here.” And then reality set back in. Still, not exactly appropriate behavior.

 

The Moral Is: Laugh often, hard and loud, especially when it’s most inappropriate!

—————–

Insight #4: Girlfriend, go to sleep with your make-up on, if you need to!

 

Rest is your friend when you are sick. When you are going through any part of cancer treatment, rest is your best friend, your boyfriend, your sister, your mother, your emotional support animal and everything in between. 

I am not a natural “rest-er.” Resting is actually exhausting for me. I’m the person who prefers to have too much to do than not enough…to be traipsing through an exciting new city rather than sitting on a beach. The state of relaxation is a foreign concept for me, and always has been. I was brought up to think that “I’ll rest when I die, but today, there is much to be done.” So my house is always organized, the laundry is always done, there are no dishes in the sink overnight. Make-up is off before bed, teeth are brushed, counters are clean and the plants are watered. I like to go to bed exhausted and feeling that I have accomplished many things.

During my cancer treatment, I was sometimes forced into a state of rest. I remember fighting a copious amount of Benadryl to stay awake so that I wouldn’t miss any part of a juicy story that my girlfriends were sharing. I recall being so hazy from the drugs that I couldn’t walk a straight line while out for a walk. Or too tired to eat my mom’s famous potato dumplings.  

I remember when my two best friends from Virginia drove up to spend a little time with me that I passed out in the bed after we went shopping. And when I tried to get up to take off my wig and make-up, they wouldn’t let me. They sat with me in bed and gave me permission to just…fall…asleep. It was the first time in all my adult years that I did not wash my face before bed. And THAT, I realized, was absolutely OK! The sun still rose…the world kept turning, and it was ok to just let go.

Gradually, I have learned that replenishment comes through rest, quiet and calmness. Stillness is sometimes necessary and waking up refreshed is a gift. That in order to be your strongest self, you need to be well-rested and well-watered (more than your plants), mind, body and soul.

The Moral Is: If the cancer tries to bury you, let it know that you’re a seed.

 

Thanks for reading, Girlfriend, and please share with your other girlfriends and boyfriends too!

And if you want to pen insights from your own cancer journey, click HERE. We’d love to hear from you!

 

Until next time,

-Your Girlfriend

The Girlfriend’s Guide to Breast Cancer, Chapter 1: The Moral Is…2022-10-11T21:44:08+00:00

A Bella Tale, My Cancer Story of Hope.

Shortly after my cancer diagnosis, I began to receive good-hearted advice from my family and friends. They all wanted me to join a cancer support group. Why? Because my crew did not think they were able or qualified to support me like other cancer patients could.  After all, how many 32 year-olds do you know with Stage III breast cancer? 

For me, I knew it was critical to stay true to myself and that my strength came from the vibrant, colorful, energetic things and people in my life. So at each chemotherapy session, I would sit with friends, who traveled from as far as Amsterdam, and took time from their busy schedules, to join me at the NYU Cancer Institute for hours of infusion, cupcakes, funny stories, dirty jokes, dirtier magazines, champagne and lots of laughs. We would laugh so hard and so loud that one time I remember saying, “Guys, we have to be a little quieter…there are sick people here.” Honestly, it was only when they stopped laughing and looked at me that I realized that I was one of those sick people. 

 The guilt I felt watching their faces crumble as they hugged me – it was intense and sometimes more than I could handle. And in the sparse, quiet moments I secretly wondered if they all came to say their good-byes. I felt awful watching my friends and family stand witness as I fought the good fight. To me, I was taking them down a dark and irreversible road which would forever mark them and strip them of their innocence. The emotional weight of being a cancer patient can take you in so many directions…fear, sadness, anger, self-pity….mine was mostly guilt and well, maybe, some good ole-fashioned anger, peppered in for good measure.

 So how did I get here? After all, I was young (only 32), fit, strong, newly married, at the height of my career and planning to start a family.  The simple truth is that I took my dog, Bella, for a walk one beautiful summer day and came home with breast cancer. Yes, you read that right.

 I was walking my dog and the next thing I knew, I was flying through the air. Bella gave me one strong, sudden tug on my left arm that surprised me and jerked me forward and off the ground, dislodging an avocado-sized tumor from my armpit in the process. The tumor was a lymph node engorged with metastatic cancer. No lumps or bumps on the breast…only a tiny spec at the very base of the chest wall that silently and aggressively ravaged its way through my body. And that enormous lymph node had been working overtime, doing its damndest trying to prevent the cancer cells from spilling over into other organs. By luck, by miracle, that walk with Bella saved my life because, according to my doctors, we would have not been able to find this in time or in any other way. After all, I was too young to even go for a mammogram.

Being diagnosed with Stage III, Triple Negative Metastatic Breast Cancer, at my age and with no family history, the doctors kept saying it was a “remarkable” case. I’ve never wanted to be more unremarkable in my life. I was thrust into dose-dense chemotherapy a few days after diagnosis and told that the chemo would likely kill my chances of ever having children, could cause other cancers or even heart failure…but I did not have even one day to waste, let alone the two weeks I needed to preserve my fertility.  It was my only fighting chance at survival, or so they said. I was led to believe that there  were no other options for me so late in the game. So I quit my shiny new job, said a prayer that my fertility would remain in tact, and assumed my new role as CEO of Cancer Treatment. 

The ironic thing is…the cancer didn’t hurt. It was the treatments that I suffered from! And it was a grueling experience. Dose-dense chemo is not for the faint of heart. The chemical agents I received, also known as “Red Devil,” were the same used in the mustard gas for extermination in WWII. It can cause cardiotoxicity (heart failure) and should typically be administered once every 3-4 weeks. Mine was administered once every 2 weeks for maximum impact. So, in essence, what my doctors attempted to do was bring me to the brink of death without actually pushing me over that slippery edge. Giving me a little time to recover and then blasting me again. It was all grit and white knuckling mixed in with inappropriate jokes at even more inappropriate moments that carried me through those days.

During the four months of chemo, I also went through genetic testing and found out that I carried the BRCA 1 gene mutation, which all but promised a nearly 90% return of my particular cancer in my lifetime. Doing that genetic test changed the trajectory of my treatment. Very quickly, my medical team switched gears from previously discussing a minor lumpectomy to now recommending a double radical mastectomy where they would actually scrape down to the chest wall. And that is what I did, with great difficulty. Not because of vanity. But because I would forever have these scars, reminders of my fragility. Reminders that if it were not for modern medicine, that I did not qualify for Darwin’s survival of the fittest theory. I thought the scars would make me feel broken, amputated…frankenstein-ish. 

I finished chemotherapy on December 9, 2005 and on January 11, 2006 I closed my eyes and surrendered to the surgeons for the most aggressive mastectomy they had to offer. Six weeks of daily radiation, that tagged my left lung and heart, followed.

To my devastation, I was left in full-blown menopause from the treatment and really twisted up about it. In general, my outlook on my cancer was positive. I understood that although I got hit by the proverbial bus, that all my lucky stars had to align for my dog to find my cancer. I could deal with anything, but infertility? No! I did not sign up for that!  Knowing how much we wanted a child, my oncologist said that he would sign all the adoption papers we needed but that I had to wait at least three years to make sure that cancer did not return. So after much discussion and anguish, we decided that we had no choice other than to wait…but determined that we would become parents one day – regardless of how a child came to us.

Less than two years later and still struggling with infertility, I shockingly discovered that I was spontaneously pregnant…for the first time, and only time, in my life. My stunned and concerned oncologist told us that I was not far enough away from the cancer to even consider this pregnancy. He said that if we wanted to do the right thing for my health, we would terminate.

What? Terminate the pregnancy? Um no, I’m not the one. For me there was only one clear option! There was no way I would ever consider stripping myself of this unbelievable gift, this miracle, this baby that found its way into our life against incomprehensible odds. 

At the baby ultrasound, the technician found the baby’s heartbeat. Her words still dance in my mind, “There’s the heartbeat… and there’s the other one. You have two babies!” Twins! Time stopped and my life changed in an instant. It was the most defining moment of my life. Both girls’ names are inspired by my cancer journey.  They leap from on my tongue as reminders of both hope and gratitude.

And my skeptical oncologist? He said that I was the first patient in his entire career that was able to conceive a child, let alone two, after the kind of treatment I received. He came to my hospital room when the girls were born to hold them and see that life actually exists on the other side of cancer. I’m happy to report that there have been other pregnancies since mine at NYU!  What I’ve come to realize is that no matter how well-meaning they are, doctors simply cannot not know everything and cannot be expected to. 

The scars I thought would haunt me? They turned into the most beautiful reminders of my grit and good fortune. I feel like a Japanese vase that has been cracked but then quickly reassembled. The cracks, painted in gold, are meant to  tell a story of beauty and strength in the broken places. And that’s what I have become – strong in the broken places, in every way!  

I tell my story to say that miracles are possible, that you should trust your instincts, that you should question everything…and that you should never give up on hope or on yourself – ever!  We lost my Bella many years ago but every time I pass the spot where she pulled my arm that day, I look up into the sky to thank HER and the universe of endless possibilities. And when I look into the eyes of my daughters, I think of hope everlasting and the perseverance of the human spirit. Nothing is impossible.

A Bella Tale, My Cancer Story of Hope.2022-12-12T03:31:16+00:00

TrialJectory is a patient-first digital health company with a mission to democratize access to advanced cancer treatment. Recognized by TIME as one of “The 100 Best Inventions of 2020” and named an honoree in the AI and data category for Fast Company’s “2021 World Changing Ideas Awards,” TrialJectory uses artificial intelligence (AI) to inform and empower cancer patients to own their treatment journey. The only offering of its kind, TrialJectory also captures and analyzes real-world patient data that can be used to further evolve the oncology research landscape. For more information, please visit www.trialjectory.com, and follow the Company on Facebook and LinkedIn.

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