July 17, 2019

Sex, Drugs and Cancer. My Life as a CEO.

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 the work we do, we invite people to share how cancer affects them. We never reveal anyone’s identity… (I get asked that a lot too).

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.

You have the power. Your peers are here to help.

Julie Larson
Stop Cancer. Start Praying.
ReVital Cancer Rehabilitation.
GVCC - Everyone’s Experience Matters

Join the conversation.
I’ll meet you there,
Dave Fuehrer

July 16, 2019

Chemo Brain AppChat Supports National Cancer Institute Research

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 tests.

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 study.

Who can participate in this study?

You can participate in this study if:

  • You are between 18 and 89 years of age
  • You have a current or past cancer diagnosis

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 tests.

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 participating?

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 participating?

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?

Please contact Dr. Todd Horowitz (Todd.Horowitz@nih.gov) if you have study-related questions.

Interested in participating? Click below to test your brain!

Sources

1National Cancer Institute. Cancer Stat Facts: Cancer of Any Site. https://seer.cancer.gov/statfacts/html/all.html. Accessed 10 July 2019.

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 contacts@grythealth.com.

May 29, 2019

What You Can Expect During Our Cancer and Exercise AppChat!

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)

Get to know Stephen by reading his bio here!


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May 20, 2019

Depression–A Cancer Survivor’s Story

Guest Blog By: Justin Birckbichler


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, in his high school days, with his favorite teacher

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.

Connect with him on Instagram (@aballsysenseoftumor), on Twitter (@absotTC), on Facebook (Facebook.com/aballsysenseoftumor), on YouTube, or via email (justin@aballsysenseoftumor.com).


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May 17, 2019

10 Things Worse Than Dying

By Ellis Emerson


There are worse things than dying.
Like grudges so old that you don’t even
remember why you’re angry.

There are worse things than dying. 
Like well-meaning people who tell you that
at least you have the good cancer.

There are worse things than dying. 
Like middle school lunchrooms and nowhere to sit. 
Or maybe just all of middle school.

There are worse things than dying.
Like hospital waiting rooms an hour after 
your appointment was supposed to start 
and no WiFi.

There are worse things than dying.
Like someone eating the leftovers that
you’ve been looking forward to all day.

There are worse things than dying.
Like people who tell you to look on the 
bright side and everything happens for a reason.

There are worse things than dying.
Like regretting not taking that trip to San
Juan when you had the chance.

There are worse things than dying. 
Like Netflix asking if you’re still watching 4
hours into a Breaking Bad marathon. Again.

There are worse things than dying.
Like taking yourself so seriously that you
forgot how to laugh. At the world and at yourself.

There are worse things than dying.
Like not really living.

May 17, 2019

Stuck

By Rachel Mihalko


This time last year
Was one of the worst times
Of my life

And all I can think of now
Is what happened then
Not what is happening now

I just want to move on
And forget this time last year
Because it feels like no good came from it
And I wish it never happened at all

Because then
Maybe I wouldn’t be stuck there now

May 17, 2019

That Was the Plan

By Ellis Emerson


I thought I planted tulips. I was sure I planted tulips.

I read about tulips. How they grow best. I studied them. Pests and diseases. The food they need. I planted rows and rows of tulips. Carefully all spring, I lined the dirt with bulbs.

Soon I’d have a field of all brightly colored tulips.

That was the plan. Anyway.

I’m confused. I now have roses growing instead. They’re lovely to look at but I can’t get past the thorns.

May 17, 2019

What You Grow

By: Rachel Mihalko


Flowers die with winter’s snow
You must water what you grow

A year ago I saw the snow
You must water what you grow

Winter was long would not let go
You must water what you grow

Now I see light down on the road
You must water what you grow

Hope sprang with the grass I mow
You must water what you grow

Now it isn’t perfect, though
And the plant has built its home
So you must water what you grow

May 16, 2019

Announcing the LGBTQIA+ Chatroom on the GRYT App!


Our users can now find a new chatroom on the GRYT App!

Introducing the LGBTQIA+ Chatroom.

A safe space to meet others, share experiences, and ask questions. With monthly meetups on the first Monday of every month, you can connect with others in a casual environment from your phone. Along with the new chatroom and programs, we’re introducing our new partner, The Transgender Cancer Patient Project.

Read below to hear from Charlie, patient, and co-founder of TCPP.


I made a blog in 2016 when I was newly diagnosed with an advanced stage of melanoma. Trying to find resources as a young trans person going through treatment was really difficult in that nothing of the sort really existed. I took it upon myself to make a transgender cancer support blog hoping I would find other people who were going through what I was. Roman, a fellow transgender cancer patient, was my only follower. I sent them a message and we met in person a couple of months later. We have been together ever since and created this project to support and uplift other trans cancer patients dealing with a gendered health system through zines (self-published books and or “magazines”), and a peer support group.


Through our own experiences and learning of others, we have also realized the tremendous need for change in the healthcare system. For this reason, on top of supporting and uplifting trans patients, we also seek to make things better by working with healthcare providers in providing more inclusive care. Thus far, we have presented at healthcare conferences where we have shared our work and presented workshops on advocacy and cultural competency. We also have and continue to equip healthcare establishments and providers with tools to make their care less gendered and more trans friendly, many of which you can find on our website for free. We look forward to the future of this project and the continued support from our communities.

I’ll see you on the GRYT App,

Charlie


Transgender Cancer Patient Project Mission

We recognize that marginalized people have a lot of expectations put on them to present and speak about their experiences in a specific way. As transgender cancer patients ourselves, we think it is important to break that down, and show that there are more to these intersections than society may expect. The main hope for this project is to provide support and community for fellow transgender cancer patients. However, we would additionally like this to be a source of education, to provoke better care and inclusivity in medical spaces, and to help destigmatize patient experiences. Our current goal is to make our zines accessible for free here, as well as in physical formats to be sold at events. All funds will be used to offset the cost of running this website, production of the zines; and aid in travel costs to zine fests and healthcare events where we share our work and present workshops on advocacy and cultural competency. We have experienced the need for community, resources, and discussion around these topics, which is why this project and your support is so important to us.


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May 15, 2019

Of course, it wasn’t cancer, I was only 14.

Beth’s Story of GRYT


“You don’t think it’s cancer, do you?”, I said to my parents as I rolled backward and extended my legs into an L shape on their bedroom floor.

“Of course not”, they replied almost in unison. The only people I knew who had cancer died. I was basically asking if they thought I was dying. They said no, but I found out later, that they weren’t sure.

It had been a few months of a lingering cough, that just keeps making its presence known, fatigue that hovered over my body like a dark cloud that increased over the year, matched with an innocent mindset that wondered why I couldn’t keep up with my high school teammates. Of course, it wasn’t cancer, I was only 14.

A day or two later, my dad came home early from work, (he never came home early), it was then I knew it was cancer. The sounds of the car in the driveway in the sunny afternoon told me all I needed to know.

I learned about a new kind of cancer that day, Hodgkins’ Disease, Stage 4 C, the answer to why I couldn’t keep up with my friends and why I was a teenager in bed, in the middle of the day.

Chemo started within a couple of days, I traded school for the hospital, teachers for nurses, and it was then my life changed forever. Over the next two years, my family and I were challenged and tested and we fought every day. We fought through chemo, transfusions, fever spikes, infections, long hospitals stays, the unknown, awaiting test results, a double stem cell transplant, radiation, we continued to fight until it was gone and I will continue to fight now that it is gone.

Although cancer might be gone, for now, my anxiety and worry have never left. Now I am faced with a new fight, this time, not physically but mentally to live to be my best, share positivity, and appreciate the days I have without cancer.


GRYT is running your first half marathon for my 20th anniversary off treatment, when many said I couldn’t and doctors always said, Beth, you should rest.
GRYT is running my 4th half marathon, within a year, with a fractured foot, when most said I shouldn’t.
GRYT is waking up every day and fighting thoughts about getting sick again with stating 3 things I’m grateful for.
GRYT is sharing I am a survivor and ignoring the worry that it will come back and GRYT is knowing that if it does, I will fight and win again.


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