I looked a friend in the eyes as she told me how much she doesn’t want to be alive anymore. How opening her eyes each day, makes her angry.
Someone confided in me that bulimia is their way of coping with the abrupt changes of vomiting through chemo to the rapid weight gain from steroids. And how those experiences are intertwined now.
A member of the community messaged me that reading my blog “sex got me through cancer” made them feel understood about something they are hiding for fear of not being accepted.
It was an intense month…
These and other conversations about infertility, genetic alterations, precision medicine, singing, crying, collapsing, finding a way to stand up… are my life now.
These are the real, the raw, the human stories of how cancer affects us. Most people (and I was one of them) keep these experiences locked inside. We don’t want to burden our family. We can’t admit them to ourselves.
When I started GRYT Health with a team of cancer survivors and caregivers, our mission was to create a place for people to have the tough conversations that the rest of the world doesn’t understand. Creating a place to let out the experiences of cancer that we didn’t need to share before cancer… but must now.
As we’ve grown GRYT (“grit”) to a million interactions among people facing cancer in 100 countries, I’ve learned how little I truly knew about cancer (and I’m an oncology researcher).
There is a movement happening. An increasing awareness of how our experiences need to be a part of treating and surviving disease. My team and I are part of that movement; of pushing healthcare forward. Of moving humanity forward.
In these projects, we’ve learned how often people become addicted to pain medication during cancer.
We hear how much anxiety and depression make people feel ashamed or misunderstood. You’re cancer-free… why aren’t you happy? Or… you have a “good” cancer.
We’ve learned why people distrust Pharma companies or clinical trials. And what steps we can take to build trust.
We learn which people are informed about their treatment options and which aren’t.
It’s hard to live this life. I cry a lot. For miracles and for tragedies. I allow myself to cry, because not getting to feel alive would is far worse.
We do this research so we can provide, and help improve, what’s available to support people through cancer.
For me, admitting that I didn’t know if I was still a man after losing both testicles, my fertility, my sexuality and my identity to cancer… opened me up to realize I’m more of a man now than I was with those things.
We all, every one of us, have things we hide because we don’t think others will understand. Or, we hide them because we can’t accept them about our self.
I’m not here to force anyone to share things they’re not ready to. But if you’re curious what can happen when you start to let out those things you’ve been hiding, we’re here. A lot of us are here.
I won’t say it’s easy. It’s not. I will say that learning to accept myself is a miracle I thought was out of my grasp.
Helping others accept themselves, is a calling I never knew I’d find.
If I can ask you one thing, next time someone says something that makes you uncomfortable, welcome it.
That feeling of initial discomfort might give way to a new understanding about someone or about life. But even if it doesn’t change anything, it shows people they can be uncomfortable exploring life with you.
I’m proud to share some of the resources our community says help them the most; find their way to treatment, support, acceptance, life or faith.
Join GRYT Health and the National Cancer Institute on Tuesday, July 23rd
from 8-9 pm ET / 7-8 pm CT / 5-6 pm PT for a Chemo Brain AppChat hosted by Dr. Todd
Horowitz. Participate LIVE in the conversation on the GRYT App, available
to download for free in the Google Play and App Stores.
GRYT Health is helping to support National Cancer Institute Test My Brain! research examining
cognition in people who have been affected by cancer. The Chemo Brain AppChat is
part of this effort to create awareness around both the topic of chemo brain
and current research. Keep reading to learn more about the National Cancer
Institute’s current Test My Brain! study
and how YOU can contribute to the way cognition is assessed and understood in
people affected by cancer.
Test My Brain!
Why is the National Cancer
Institute studying cognition in people affected by cancer?
More than 15 million people in the United States are affected by cancer
each year, and in 2019 alone it is estimated that there will be 1,762,450 new
cancer cases in the United States.1 Growing research indicates that
cancer exposure and treatment can lead to long-lasting cognitive side effects,
commonly referred to as “chemo brain”. Course, severity, and remediation of
chemo brain are largely unknown. A major barrier to understanding
cancer-related cognitive impairment or dysfunction is the lack of appropriate
What is the goal of this study?
The overall purpose of this study is to identify new options for
cognitive assessment that may help to improve our understanding of cognitive
impairment in people affected by cancer. The National Cancer Institute hopes to
identify new options for cognitive assessment by comparing cognitive tests and
clinical neuropsychology tests for sensitivity and validity.
How many people will participate
in this study?
Approximately 350 people affected by cancer will participate in this
Who can participate in this
You can participate in this study if:
You are between 18 and 89
years of age
You have a current or past
You cannot participate in this study if:
You are currently receiving
cancer treatment (chemotherapy, hormonal therapy, radiation therapy or surgery)
You have a disability that
substantially interferes with your ability to complete neurocognitive tests
What does participation entail?
Participants that consent to participate in the study will be directed
to the study via a link with a coded ID. The coded ID will allow you to access
the study in more than one sitting.
The study takes approximately 65 minutes to complete. It contains 2
questionnaires about your background (demographic and cancer information)
followed by 12 cognitive tests that look at your attention and cognitive style.
Upon completion of the study, you will receive the results. You will
also be able to see how you compare to others who have completed the same
If you are interested in participating in this study, this link
will take you to study information and the online consent.
What are the benefits of
You will receive no direct benefits from participating, aside from
feedback on your performance following completion of the study.
No compensation will be provided for participating in this study.
Results from this study will allow cancer researchers to identify new
options for cognitive assessment that may help to identify mechanisms that
cause cognitive impairment in people affected by cancer.
What are the risks of
This study involves minimal risk.
You may experience discomfort when completing the study questionnaires
or experimental tasks; you are free to exit the study at any time.
There is a risk for the loss of confidentiality. The researchers have
procedures in place to lessen the risk of this possibility.
Who can I contact if I have
questions about this study?
An AppChat is a free LIVE event that takes place on the GRYT App.
You’ll find input and engagement from the community, along with expertise from
speakers. AppChats are not only a great learning opportunity, but a way to
connect with other members of the community like you. Check out GRYT Health on
Facebook and Instagram for AppChat announcements. Questions? Email us at
Join us on Tuesday, July 23rd from 8-9 pm ET / 7-8 pm CT / 5-6 pm PT for a Chemo Brain AppChat in collaboration with the National Cancer Institute. Participate LIVE in the conversation on the GRYT App, which is available to download for free in the Google Play and App Store. Keep reading to learn about the content of this AppChat, interesting facts about cancer and cognition, and the host Dr. Todd Horowitz.
Yes, chemo brain is real! And, chemotherapy is not a prerequisite for it. If you or your loved one has received a cancer diagnosis, this AppChat is for you.
During this AppChat you will learn about:
What is chemo brain? How prevalent is it?
What do we mean by “cognitive problems”?
Are there ways to minimize chemo brain?
What is the National Cancer Institute doing to better understand chemo brain? How can you get involved in this research?
This AppChat on the GRYT App will be hosted by cognitive psychologist and vision scientist Dr. Todd Horowitz, PhD; he studies how our brains perceive the world around us. Dr. Horowitz is a Program Director in the Division Cancer Control and Population Sciences at the National Cancer Institute.
Here are some interesting facts about chemo brain from Dr. Horowitz:
Cognitive problems that survivors have reported include difficulties with concentration, memory, word-finding, learning new things, and getting lost.8
Many studies show that patients are already functioning below normal even before they start chemo treatments. This has lead researchers to start asking how cancer itself, and/or the stress of a cancer diagnosis can be affecting cognition.6
It’s not just chemo: radiation therapy, endocrine therapies, anti-angiogenic treatments, and targeted therapies have also been linked to cognitive difficulties.2, 4, 5, 7
Some genes may make people more susceptible to cancer-related cognitive impairments.1
Cancer survivors have a lower chance of getting Alzheimer’s disease than the general population.3
Let’s meet our host, Dr. Todd Horowitz!
Dr. Horowitz grew up in Toledo, Ohio and earned his BS from Michigan State University. After two decades of Midwestern winters, he moved to California to study for his PhD at UC Berkeley. From 1995 to 2012, he worked at Brigham and Women’s Hospital and Harvard Medical School, where he was Assistant Professor of Ophthalmology.
After nearly two decades in Massachusetts, he took a position at the National Cancer Institute, where he is now a Program Director in the Division Cancer Control and Population Sciences. His mission is to engage other cognitive psychologists and vision scientists with problems in cancer control. For example:
How can we help radiologists read images more accurately?
How can we use visual media to help communicate ideas about risk and probability to cancer patients?
What is the nature of the cognitive difficulties experienced by cancer survivors, and how can we best measure these problems and use that knowledge to help survivors?
He has published over 70 peer-reviewed research papers, but has never been to Disneyland.
He lives in Washington, DC with his wife Laura. He enjoys cooking, roasts his own coffee, and makes his own yogurt, granola, vanilla extract, vinegar, tonic water, and ginger ale. He is a voracious reader of fiction, particularly contemporary fiction and science fiction. He tries to take advantage of the DC area’s vibrant theater scene. He also enjoys swimming, biking, and long walks around the city; he does not enjoy winter sports.
1Ahles TA, Li Y, McDonald BC, Schwartz GN, Kaufman PA, Tsongalis GJ, Moore JH, and Saykin AJ. Longitudinal assessment of cognitive changes associated with adjuvant treatment for breast cancer: the impact of APOE and smoking. Psycho-Oncology. 2014; 23(12): 1382-1390.
2Bender CM, Merriman JD, Gentry AL, Ahrendt GM, Berga SL, Brufsky AM, Casillo FE, Dailey MM, Erickson KI, Kratofil FM, McAuliffe PF, Rosenzweig MQ, Ryan CM, and Sereika SM. Patterns of change in cognitive function with anastrozole therapy. Cancer. 2015; 121(15): 2627-2636.
3Bowles EJA, Walker RL, Anderson ML, Dublin S, Crane PK, and Larson EB. Risk of Alzheimer’s disease or dementia following a cancer diagnosis. PLoS One. 2017; 12(6): e0179857.
4Gan HK, Bernstein LJ, Brown J, Ringash J, Vakilha M, Wang L, Goldstein D, Kim J, Hope A, O’Sullivan B, Waldron J, Abdul Razak AR, Chen EX, and Siu LL. Cognitive functioning after radiotherapy or chemoradiotherapy for head-and-neck cancer. Int J Radiat Oncol Biol Phys. 2011; 81(1): 126-134.
5Ganz PA, Petersen L, Castellon SA, Bower JE, Silverman DH, Cole SW, Irwin MR, and Belin TR. Cognitive function after the initiation of adjuvant endocrine therapy in early-stage breast cancer: an observational cohort study. J Clin Oncol. 2014; 32(31): 3559-3567.
6Janelsins MC, Heckler CE, Peppone LJ, Kamen C, Mustian KM, Mohile SG, Magnuson A, Kleckner IR, Guido JJ, Young KL, Conlin AK, Weiselberg LR, Mitchell JW, Ambrosone CA, Ahles TA, and Morrow GR. Cognitive complaints in survivors of breast cancer after chemotherapy compared with age-matched controls: an analysis from a nationwide, multicenter, prospective longitudinal study. J Clin Oncol. 2017; 35(5): 506-514.
7McGinty HL, Phillips KM, Jim HS, Cessna JM, Asvat Y, Cases MG, Small BJ, and Jacobsen PB. Cognitive functioning in men receiving androgen deprivation therapy for prostate cancer: a systematic review and meta-analysis. Support Care Cancer. 2014; 22(8): 2271-2280.
8Myers JS. Cancer- and chemotherapy-related cognitive changes: the patient experience. Semin Oncol Nurs. 2013; 29(4): 300-307.
What is an AppChat?
An AppChat is a free LIVE event that takes place on the GRYT App. You’ll find input and engagement from the community, along with expertise from speakers. AppChats are not only a great learning opportunity, but a way to connect with other members of the community like you. Check out GRYT Health on Facebook and Instagram for AppChat announcements. Questions? Email us at email@example.com.
Join Speaker and LCSW, Julie Larson, on Tuesday, June 18th, from 8–9pm ET / 7–8pm CT / 5–6pm PT for our Managing Anxiety AppChat.
Whether you’ve been newly diagnosed, are a longterm survivor, or a busy caregiver, you can ask your questions, contribute to the conversation and hear from Julie, in the AppChat Discussion Chatroom of the GRYT App!
Julie Larson is a licensed clinical social worker who has spent her career working in oncology supportive care. She has a vibrant private practice working primarily with individuals under the age of 40 years facing an unexpected medical diagnosis. Julie is a frequent speaker — educator to both survivor and professional audiences on the impact of a serious illness at a young age and the innate capacity to live fully after a cancer diagnosis working alongside her clients and audiences, Julie helps people learn to identify inherent strengths and cultivate additional resilient behaviors to build confidence in the ability to navigate hardship. Her clinical work has led her to be a trusted advisor to many advocate organizations on strategies to improve and grow their young adult programming and she has been featured contributor for many online and print publications.
On August 1, 2017, just weeks before the start of my last year in graduate school, I was diagnosed with Acute Myeloid Leukemia — an aggressive blood cancer. I was immediately hospitalized for treatment and on November 7, 2017, I received cells from an anonymous donor for an allogeneic stem cell transplant, a hope for a cure.
Almost exactly one year from my first diagnosis, I was diagnosed again with AML on August 13, 2018. Having a relapse with this type of cancer is dangerous. It is a beast and it will stop at nothing to kill you. As a second line of defense, on October 31, 2018, I had another stem cell transplant but this time, I received cells from my father, another hope for a cure. However, less than five months after my second transplant, I relapsed again — the beast is back, and it will eventually kill me.
When the shock of “being terminal” wore off, my life got significantly better. We tell ourselves we want to live in the moment and this is my opportunity. I don’t have a timeline. I don’t know when I’ll be too sick to do what I want. For now, I wake up, I eat delicious foods, and I travel to as many places I possibly can. I want to be with the people I love, pet dogs, and learn to cook the perfect filet mignon. My life has never, and will never be defined by my diagnosis, but my diagnosis has helped me define and morph my life into something I never imagined it could be.
GRYT is what polishes the stones and makes the pearls. It’s the little pieces of dirt and grime, the hard times that annoy you, that if left alone, make something worth keeping.
GRYT is pain and suffering in any form that force change upon a person.
GRYT is at the crossroads of time and discomfort where you find growth and progress despite the circumstances.
VP of Programs for GRYT, here. Many of you know me from interacting on the GRYT app. Full disclosure, I’m usually in my pajamas on my couch when we’re chatting.
It’s been an immense pleasure to get to know the GRYT community over the past couple years, and that was just through the screen of my phone! GRYT had the opportunity to up the ante the past two years at CancerCon to host our only in-person event to date: the Tell Your Story Open Mic Night.
This 90-minute experience for patients, survivors, caregivers, and professionals gives everyone both the opportunity and the platform to take two minutes to share with the audience anything they’d like about their story. And I mean, anything. There have been stories of hope, of death, inspiration, and a lot that made the whole room cry.
Two minutes doesn’t sound like much. I mean, what can you actually do in two minutes? Send a text? Pop something in the microwave? Set up a coffee pot if you have the beans pre-ground? Yet it’s 120 seconds of panic-stricken, sweat-inducing time for me. Public speaking isn’t my forte… even though I seem to find myself in repeat situations where I do it. There’s something about a microphone that terrifies me. Maybe it’s the awkward echoing that occurs as you say your first few words. Or the fumbling through adjustments to get the microphone at the right angle. The static feedback, sharp tones, and loud booms embody my nightmares. If we’re being honest here, I’m awkward and don’t recover easily.
This past April, we had twenty-eight people embrace those two minutes and share unbelievable stories of courage, defeat, sweat, tears, happy moments, and fear. Many shared with me how they were flat out scared beforehand. My go-to response is always an exasperated, You’ll be fiiiiine, knowing full well I wouldn’t be the one in a vulnerable position. Hypocritical, I know.
The first speaker who braved the podium is a melanoma patient, a single mom, and going on her second year of treatment. She shared the following story:
Somewhere Before and After
First, let me start with a spoiler. We’re all going to die.
I know, right?! I was living my life without this knowledge too.
October 23rd, 9:30 am
There is this moment
After the biopsy. Before the results.
Cancer purgatory. In which I both
Have cancer and do not yet have cancer.
Living and Dying. Simultaneously.
October 30th, 5:17 pm.
Do you know how many Cinnamon rolls I’ve justified eating because I have cancer?
Except I’m not on death row planning my last meal.
And you have to find a way to live in the space in between living and dying. Not as an excuse but as permission.
You spend a lot of time on pause for someone whose life suddenly has a big question mark after it. You’d think living would hurry up for the dying.
She gave me a lot to think about. My brain immediately took me to lecturing myself about how every day is a gift and need to actually take vacations and leave my phone behind. Food for thought.
Following her were twenty-seven other courageous people. Their stories embodied the authentic truth that is cancer. Among them, a speaker from Australia, an oncology social worker, and a caregiver whose daughter had traveled with her. There were students and grieved speakers whose loved one had been taken by cancer.
A young adult who had just quit his job and then subsequently been diagnosed; a father who was a doctor and had to give the news to his daughter that she had cancer. An app user, a survivor herself, had lost a close friend to cancer earlier this year. A son who had to translate to his parents in Spanish that he was just diagnosed with cancer. Probably the most memorable was a set of twins; one terminal and the other, her caregiver, who read her sister’s carefully articulated eulogy. Everyone’s story equally as touching and valuable to hear as the last.
The audience that slowly grew over those ninety minutes probably fascinated me the most. Without knowing each other, they laughed, cried, and cheered in unison. Myself included. The speakers’ triumphs, defeats, and frustrations mirrored those of the audience members. The harmony among the crowd came from the commonality of cancer. These weren’t expert speakers trying to push fundraising initiatives or personal agendas. They were normal people, just trying to live their lives when cancer was suddenly dropped onto their laps.
Over the upcoming weeks, GRYT will be posting these stories. Through videos and pictures, you can immerse yourself in the same experience that the twenty-eight people shared with the in-person audience.
I challenge you to watch every single one. Allow yourself to embrace the emotion and get inspired. Then hop on the app and share your story, share a low point you had or a high you were on after a personal triumph. Share your advice, your experiences, and your own emotions. Or even just let that speaker know how much it meant hearing their story to you. They had the courage to move past the awkwardness of the open mic and their maybe sweaty hands, to work through the momentary panic to share that piece with the audience in that room and several others, like you, here on the internet.
This was our second year hosting the Tell Your Story Open Mic Night and it was just as unique as the first one. The stories touched my heart along with the people sharing them. I look forward to seeing the years progress forward into more stories, more inspiration, more authenticity.
Your voice could be the next voice to inspire others. GRYT will be hosting this same event during GVCC. The good news? You’re off the hook for the awkward microphone transition.
My cancer story was actually quite simple but nonetheless, shocking. You see, I have been fundraising voluntarily since 1976 because I believe we should take care of each other. I am a full-time Blues vocalist and my shamelessbegging style to spread awareness worked magic during performances.
No, it did not run in my family, no I never drank, used drugs or smoked, no I didn’t eat sugar, yes I took care of my body…yet it showed up anyway. Oh boy. Since I have been telling people for centuries to be informed and NOT live in fear, I was now in a position to walk my talk. And I did. I HAD to!
After a “concerning spot” appeared on my MRI, I had a biopsy on Thursday, April 28, 2011 and I was diagnosed with breast cancer at 4:11pm on Friday, April 29, 2001 in Scottsdale, Arizona while visiting two great friends. Since my hubby was in Las Vegas where we lived, I called and told him the news. Then I called all my friends to make sure they, too, were aware. Then I went to an art party with my two great friends. On Saturday, April 30th, I went shopping all day, and on Sunday, May 1st, I laid by their pool in their gorgeous sanctuary backyard; and Monday, May 2nd, at 7 am, I was looking at my doctor and her scroll of things I needed to do before a lumpectomy. I didn’t live in Arizona, but I got out my GPS, went to every place on her list for blood work, tests, oncology, etc., finished it up on Tuesday, May 3rd and on the morning of Wednesday, May 4th, I was on her surgery table getting that lumpectomy. Oh yeah…Thursday, May 5th, I was heavily bandaged and out running my 2-mile trek like usual.
With my lumpectomy surgery complete (and with help from the biopsy bruising), I now had a greenish-black breast that I affectionately named My Franken-Booby! I was now on track for 45 rounds of radiation, no chemo, lots of scans and, after 6 weeks of radiation, watching the flesh decompose under my right armpit. I just have to say that it was bizarre, unbelievable and a little funny in a sick sort of way. It smelled like rotting raw chicken meat, funky gym shorts, and stinky armpit, and made it impossible to wear a bra. So I didn’t. And I cut the right side out of every shirt, went places and told them I was “an Imhotep mummy (LOL!) so please forgive my rotting, stinky armpit and my open to the public boob!”.
Most people looked really concerned once they heard the word cancer but laughed once they realized I had a pretty good sense of humor about my status. Yep…got the chance to use my heal your heart through laughter & prunes inspirational message on myself!
So, there you have it. It’s not really a giant story compared to so many others I have read, heard or seen but, it keeps reminding me why I will always continue to fight for breast cancer awareness, inspiring others at all times and the strength of positive thoughts and humor.
GRYT is remembering that breast cancer does NOT discriminate when it comes to race, age or sex! GRYT is turning the BEST medical team into lifelong friends because they really do care! GRYT is not letting cancer, or ANY illness, define who you are!! GRYT is having a husband who stands in any and every storm with you to get the job done! GRYT is knowing that the absolute worst cancer is the one of the mind! GRYT is knowing that my voice is a God gift to always be used as a blessing to myself and others.
Moderated by Stephen Cerne, Owner/President of Fully Functional Fitness, Inc.
Join us on June 4th, from 8–9pm ET / 7–8pm CT / 5–6pm PT for our first Cancer and Exercise AppChat! Caregiver and Exercise Expert, Stephen Cerne from Fully Functional Fitness will be leading the discussion on the GRYT App. We’ll be chatting on everything from guidelines, to exercise programs, and different ways to alter and adjust exercise to accommodate different needs.
What we’ll be covering:
What makes up a well-rounded exercise program? • Cardiovascular-Respiratory • Muscular Strength & Endurance • Flexibility • Balance
American College of Sports Medicine (ACSM) Guidelines on physical activity: •How does one determine exercise intensity? •How to determine your maximum HR •Tools for use in determining intensity
Specific Guidelines •Cardiovascular-Respiratory •Muscular Strength & Endurance •Flexibility •Balance •How does one alter an exercise program?
Factors: •F- Frequency (How often) •I- Intensity •T- Type/Modality (Ex. Walking, biking, swimming) •T- Time/Duration (length of workout)
Conference of Its Kind to Bring Together Patients, Survivors, Caregivers, Non-Profits,
Healthcare Providers, Hospital Systems and Industry Professionals ~
~ ’Everyone’s Experience Matters’ Theme Aims to Make the Ideas and
Experiences of People Impacted by Cancer Central to Future Healthcare
Innovation, Legislation and Decision-Making ~
ROCHESTER, N.Y., May 28, 2019 – GRYT Health
(“GRYT”), an award-winning, mobile app-based social community for people affected
by cancer, today announced it will host the first-ever Global Virtual Cancer
Conference (GVCC19) on October 5, 2019. GVCC19 will give patients, caregivers,
advocates and healthcare decision makers from around the globe a “hands-on”
opportunity to collaborate towards creating a new patient-centric framework, through
a full-day of interactive virtual sessions hosted on the GRYT digital platform. The conference aims to elevate the voices of those who have
been profoundly impacted by cancer, to ensure their critically important and
valuable ideas and experiences are central to future healthcare innovations,
legislation and decisions.
"Traditionally, treatment decisions have
been made without fully considering the patient and caregiver perspectives.
When I was diagnosed with cancer twice in my twenties, I remember how anxious
and overwhelmed I felt, constantly wondering if I was making the right
decisions – if these were really my only options,” said David Fuehrer, CEO
of GRYT Health. “Through the Global Virtual Cancer Conference (GVCC19), we
are creating a level playing field where everyone in the cancer community is
able to work together towards improving the experiences of people facing cancer
today and developing solutions that make healthcare and information more
accessible to patients and caregivers.”
Leading companies, non-profits, patient
advocates and influencers including Bristol-Myers
Squibb and Family
Reach will be providing expert insights, case
studies, and keynotes focused on patient-centered drug development, clinical
trials, psycho-social issues and quality of life. Through GVCC19, patients and
caregivers will have a platform to share their ideas and experiences on the
topics that are most important to them.
“We look forward to collaborating with GRYT
Health and engaging with patients and caregivers in a new way through GVCC19,”
said Cathy Trzaskawka, head, global advocacy at Bristol-Myers Squibb. “Patients
are at the center of everything we do and by focusing on their needs, and the
needs of their families, we maintain a sense of urgency that drives us to work
smarter and faster. Our patients know their life and their goals better than
anyone else, so engaging them at the right time, with the right content, and on
the right platform will allow us to use those insights to create more solutions
for those facing serious disease with limited or no options.”
GVCC19 will be hosted on the GRYT app and a
desktop virtual platform for a full-day of live, interactive programming.
GVCC19 offers a way for everyone to participate in and enjoy the same benefits
of a physical conference, without the travel and expense that can often place a
significant burden on people dealing with cancer.
“Many families facing cancer are confronted
with financial barriers that force them to make dangerous choices, such as
whether to pay for treatment, transportation or child care. GVCC19 provides our
families with a unique opportunity to connect with others and gain access to
important information without the added burden of travel and expense,” said Carla
Tardif, CEO of Family Reach. "We are thrilled to partner with GRYT Health
and to be a part of GVCC19 to help bring attention and support to the millions
of families who are struggling financially simply because they are trying to
care for themselves or a family member.“
At the 2019 Global Virtual Cancer Conference
(GVCC19), patients, caregivers, healthcare providers and industry leaders will
lead interactive discussions on topics that are changing the future of cancer
care. Through virtual sessions hosted on GRYT’s platform, conference attendees
will address topics critical to improving patient equality in cancer care and
collaborating to understand and solve for the issues most important to the
cancer community. A specific focus will be placed on patient-centered drug development,
access, clinical trials, psycho-social issues and quality of life.
GVCC19 is committed to improving
the way healthcare consumers learn about and interact with brands whose values
align with theirs; not just in managing disease, but in living their lives. To
reflect this, GVCC19 participants will have the opportunity to engage with
brands and their content through an interactive virtual exhibit hall.
Participants are also encouraged to visit the GVCC19 “Virtual Clinical Trial
Fair” where participants can learn more about clinical trials that may be
appropriate for them. To learn more or register for GVCC19, please visit www.gvcc19.com
ABOUT GRYT HEALTH
GRYT Health is
an award-winning, social community and research platform founded by cancer
survivors and caregivers. Through GRYT’s technology, people affected by cancer
are able to connect to others with similar experiences, access information that
is tailored to their specific needs/diagnosis and collaborate with the world's
largest pharmaceutical companies to provide insights that help these firms
improve quality of care.
GRYT’s community of patients, survivors,
medical professionals, researchers and advocates, extending across all 50
states in the U.S. and in more than 100 countries worldwide, have participated
in almost one million interactions to date. The company's research initiative,
The GRYT Project, bridges the communication gap that has traditionally
prevented the cancer community and industry from optimizing care through an
GRYT values and partners with
socially-conscious brands and brand experiences that inspire people to live
according to their own standards. The company is headquartered in Rochester,
NY. For more information, please visit www.grythealth.com. To download the app, please visit www.grythealth.com/app.To join The GRYT Project, please visit www.grythealth.com/the-gryt-project.
On my testicular cancer awareness blog, A Ballsy Sense of Tumor, I have written extensively what it’s like to experience depression as a cancer survivor. I eventually recognized the signs, asked for help, and went on antidepressants. While I am happy to say they are definitely working, I only knew to ask for them since this wasn’t my first time battling depression.
I’ve alluded to this in past writings, but I fought with clinical depression during my sophomore and junior years in high school. However, I’ve never written a full account of this trying time, and in the wake of the unfortunate events with Anthony Bourdain, Kate Spade, and countless others throughout the past decade, I’m ready to take that leap in hopes of letting someone else know to ask for help.
For context, I grew up in an upper-middle class family. I am the oldest of three kids and my parents are still together. I was in the gifted program since third grade, participated in a number of sports, and school came rather easy to me. In essence, I was the definition of privilege and from the outside, I had no “reason” to be unhappy.
It started slowly enough. Around the start of sophomore year, I realized I was increasingly feeling sad and hopeless. Nothing seemed to bring me joy and I always managed to find the negative in every situation. I couldn’t figure out why this was happening, but I felt too ashamed to open up, since I had a pretty good life. However, there was a lot of pain inside that I just didn’t know how to manage.
I turned to self-harm to try to let out some of this pain. This is the first time I am publicly admitting this, and before this writing, less than five people in the world knew I did this. I didn’t want to cut myself since that would leave marks, which would make it hard to keep under wraps. I had done a stunt previously where I sprayed Axe body spray on my hand and lit it on fire. It didn’t cause pain if you did it as a stunt, but if you let it burn long enough, it hurt like hell. I did this a handful of times. It didn’t seem to help, yet it became a habit.
I suppose I subconsciously wanted to let some of this struggle out. I remember one day I put up an “Away Message” on AOL Instant Messenger that was beyond the scope of the normal, teenage angst. When I returned, one of my friends (who I later found out had depression himself) had said, “Um, Justin, you might be depressed.” Even though I was self-harming from time to time, I didn’t believe that I could be depressed. Again — I had a good life; what right did I have to be depressed?
At some point, this internal pain began to be too much. I began thinking that I just didn’t want to live anymore since it was too hard, even though nothing external was “wrong.” I started experiencing thoughts of suicide.
While I never actually attempted it, I had concrete plans on how I would do it. It’s still hard to walk past the area in my parents’ home where I was planning to do it. My little sister is what ended up saving my life. She looks up to me and I didn’t want to let her down. My love for her was stronger than my hate for myself.
Reaching this point was a pivotal moment. I finally admitted something was wrong and I needed help. Yet, I didn’t know how to ask. I decided to stop wearing a mask of being ok on the outside. I moved a little slower. Sighed a little bit more. Smiled less. One day, I flopped down dramatically on the couch and my mom finally asked if I wanted to talk to a therapist. Even though I was most likely weeks away from taking my own life, I couldn’t directly ask.
I agreed to get help and began seeing a therapist. I continued harming myself throughout the first few sessions and thoughts of suicide still lingered. Eventually, I admitted both of these to the therapist and we decided to start me on a course of antidepressants.
Initially, my dosage was wrong and I experienced a panic attack not too long after beginning them. I freaked out because my mom told me to go to bed and I wasn’t ready yet. I locked myself in my room and began hyperventilating. My dad literally kicked down my door and carried me outside to get fresh air. I calmed down, the doctors adjusted my meds, and the meds took hold. I continued going to the therapist and this one-two punch of medication and therapy helped raise me out of depression.
I don’t remember exactly when I got off of the medication, but it was an uneventful process. I did not slip back into depression, and had no problems coming off of them.
While this experience was probably the hardest in my life, and that’s saying a lot since I faced testicular cancer at 25, it ended up helping me recognize the symptoms early on during my survivorship phase of cancer.
I know that having depression at a young age puts me at risk for a recurrence later in life, and this study from 2017 that said about 20% of cancer survivors experience PTSD symptoms within six months of diagnosis. The CDC also reports that cancer survivors take anxiety and depression medication at almost twice the rate of the general population. Basically, it was a perfect storm of risk factors and I’m glad I knew these figures.
This time, I asked for help and antidepressants. I’m happy to say I am still on the meds and not feeling effects of depression. Experiencing the episode in high school helped me advocate for myself earlier before it got worse.
In addition to being a testicular cancer survivor, I am a fourth-grade teacher. I noticed one of my students seemed very upset, distant, and prone to tears. I requested a conference with his parents to discuss these episodes and tried to recommend they take him for further evaluation. They told me that they give him everything they wanted, love him unconditionally, and he has no reason to be sad. In a moment of “I’m not sure I should do this,” I shared that what I had experienced (leaving out the self-harm and thoughts of suicide parts) since I had “no reason to be sad” too. I saw something change in their eyes and I hope it may have paid off.
You can’t always tell if someone is experiencing depression from the outside. Like I said, I had a prime life and no real reason to be upset. Depression is a chemical imbalance in your brain and it’s always influenced by external factors. Asking if a person is feeling okay won’t always work, either. They might not even be aware of their own feelings or may hide it out of a certain feeling of stigma. My best advice is to be there for that individual and to be non-judgemental. In 2019, we should be treating mental health as a serious issue and stop the stigma surrounding it.
I hope by sharing my story, even one person realizes that it’s okay to ask for help and doesn’t feel they need to suffer in silence. I compare taking care of mental health to needing chemo for cancer or a cast for a broken arm. No one would blink twice about treating either of those conditions, but why does society not have the same attitude towards mental health?
Help is available from anywhere in the United States via Crisis Text Line (text HOME to 741741) or the National Suicide Prevention Lifeline at (800) 273–8255. Either service is free, confidential and available 24 hours a day, seven days a week.
About the Author
Justin Birckbichler is a men’s health activist, testicular cancer survivor, and the founder of aBallsySenseofTumor.com. From being diagnosed in November 2016 at the age of 25, to finishing chemo in January 2017, to being cleared in remission in March, he has been passionate about sharing his story to spread awareness about testicular cancer and promote open conversation about men’s health.
In addition to his work through ABSOT, Justin’s writing has appeared in Cure Magazine, I Had Cancer, The Mighty, The Good Men Project, Stupid Cancer, and more. His work with awareness of men’s health has been featured by Healthline, Ball Boys, and various other organizations. In 2017, ABSOT won an award for the Best Advocacy and Awareness Cancer Blog in 2017 and Justin was recognized as one of 15 People Who Raised Cancer Awareness in 2017. He was also one of the selected attendees of HealtheVoices18.
Justin also serves as a member of the Strategic Advisory Board for the Cancer Knowledge Network and as a board member of the Young Adult Cancer Survivor Advisory Board for Lacuna Loft.
Outside of the “cancer world,” Justin is a teacher, amateur chef, technology aficionado and avid reader. He lives in Fredericksburg, VA with his wife, cat, and dog.