5 Views from Cancerland: 'How Do You Stay Connected?'

Man Up to Cancer reached out to some of our community members this week with a “10-minute flash writing challenge.”

The topic: “How I’m staying connected with others, in a time of physical distance”

No edits. No filters.

The idea is to share strategies to stay connected during the COVID-19 crisis. We are all aware of the physical risks of this virus — especially here in Cancerland, where many of us are more vulnerable than our ‘healthy’ peers. 

But we need to be aware of the mental health risks, too. Physical isolation is tough. We’re not used to it. On top of that, there’s the anxiety of the news and our social media feeds. This is some seriously messed up sh%t. How can we stay grounded and positive? Staying connected with our people — our communities — is essential. 

Thank you to those who contributed. Do you want to take the 10-minute writing challenge? Contact me!

In solidarity,

Trevor

‘Digging into projects’

By MATT VANN

I’ve been digging into a couple of projects that are keeping me digitally connected with friends and family, in a way that includes my usual crowd and a few I haven't had contact with in a while.

First is my podcast, which has been running about a year. I took a month-long break because my treatment was fatiguing and I felt unmotivated, then the quarantine hit. A few friends finally convinced me to give a streaming version a try, and it's been a fun way to hang with the guys I typically hang around with. It spawns interaction with others, and I'm inspired to look into some local history topics.

Second is a scanning project I've been working on since I retired due to cancer. I have tons of old photographs and negatives, and spent many hours digitizing them and enhancing some of the more significant ones. It's stirred quite a few memories and even a few minor historical moments that have spurred conversation with others, mostly through social media.

There are several local clubs I participate in (Masons, archery, radio, rugby, etc.) that are on hiatus, but we're virtually hanging out online to stay in touch and create stupid activities to keep everyone interested.

My wife is working from home, and she's diligent to the point that I only see her a couple of times during business hours. I've been keeping up with friends and family from her side who contact to see how we're doing.

My band has been shut down for a while due to my illness and now the lack of venues, so we're working on recording by sending stems to each other online. The treatment has flattened out my mojo for writing, but my ear for tone and recording seems to be intact. I have a few tunes to work on in my home studio that's filled with cool gear.

We're friends with our neighbors, and we manage to visit outside (at safe distance) and across the fence to keep in touch and help out with delivery and such for the older folks who can't get out. It's been refreshing to see people get together in an unprecedented fashion.

It's been a pleasure to hang out with the Wolfpack group in the FB page and in the live stream. It's a great comfort to share with people who are in the same situation and dealing with the same sort of mess.

Stay in, stay healthy, stay happy.  Cheers!

Matt Vann is a 49-year-old colon cancer survivor in Midland, Texas. He's a retired law enforcement officer, U.S. Coast Guard vet, musician, and current host of "The Vann Cave" podcast.

Matt Vann

‘A call, text, voicemail or emoji away’

By DENNIS ARRIVILLAGA

We live in an era where mobile devices, social distancing, and social media apps are very intertwined with our every-day lives. Sadly, it wasn’t surprising to spot ‘modern families’ out at parks not fully interacting with each other, as everyone is/was engaged using their mobile devices.

However, now that we’re being forced to isolate one another from physical contact and gatherings, amid the risks of this pandemic, all of the sudden, we feel robbed of our freedom and ability to get close to our friends and loved ones.

I’ve been working as a marketing manager completely remote for about 7-8 years. Rarely having to report back, physically, to work unless an important meeting arises. Most of my social interactions happen after hours and weekends with my friends. And of course, staying connected with family and friends on a daily basis is a breeze thanks to technology – always a call, a text, a voicemail or an emoji away.

On top of that, I do a lot of volunteer work for various colon cancer societies, forums, and online communities, where I admin a couple of private groups. I love helping, supporting and advising others how to deal and cope with the many ups-and-downs as it relates to dealing with colorectal cancer.

I lost my older brother four years to this horrible disease and I’ve been engaged in helping others and staying connected with many patients and caregivers since.

I always thrive from social interactions, whether in-person, phone, or virtual connections. I think now more than ever, on my free time, I like to keep in touch with all my friends, close friends, family and virtual friends. It is important to keep our minds busy and positive at all times. It’s a great way for coping against adversities and anything life throws at you.

I would highly recommend for everyone to keep a great and positive state of mind, continue being active with interacting with others virtually, especially those who we know need it the most during such difficult times.

Dennis Arrivillaga, 39, of Minneapolis, is a caregiver who lost his older brother to colon cancer in 2016. Marvin Arrivillaga, was 39 when he died.  

Dennis Arrivillaga

‘Staying in touch with 11 grandkids’

By SCOTT CLARK

I stay in touch with my 11 grandkids — ages 1 year to 22 years — via the phone or messenger. I do not do computers very well so my wife will hook me up with FaceTime or what ever it is called. And believe it or not I still prefer the land line. For you youngsters, that is a phone that plugs into your wall. 

I still write letters on paper with a pen then mail them. Told you I was old and wish I was back in the old days sometimes.

I do text but on the keyboard and with my neuropathy in my hands (I get a lot of ‘what did you just write?’) my finger doesn't always go where my brain tells it to.

It is tough at times because I am being more careful as to what I do. I go nowhere, try to keep my odds up which is hard when wife works at a hospital. I miss going to see friends and meeting others for lunch.

I pray that all of my family and all of yours stays safe.

Scott Clark, 72, lives with his wife in South Bend, Indiana. He is going through treatment for colon cancer. A retired machine shop supervisor, Scott is a U.S. Navy veteran. 

Scott Clark

“Live...and Love Living Life”

By KIRBY LEWIS

I live in a small town in the Eastern Panhandle of West Virginia. We are only about 70 miles from our nation’s capital. It allows me to have excellent medical care for which I require because I have Stage 4 (or, metastatic) breast cancer.

My cancer has spread into both lungs and into my bones, and it is only a matter of time, before I succumb to a disease, from a simple virus, or an infection, a cold, or whatever. It is unlikely that I will die from my breast cancer, rather more likely from a side effect, or as an aside to a medical problem that, which most “healthy people” would easily survive.  

I feel so blessed that I am still living. The fact that I get up every day. I look out my window to start my day as the sun comes over the horizon, and I end it with the moon peeking out behind the clouds, while I am content to realize that I have enjoyed the blessings of yet another day. This drives me, it gives me hope, and it gives me perspective. It is exhilarating for me to speak with others: to inspire, and hopefully aspire, others to seek God. For that is what brings great meaning to life and to my life.

During these, most difficult times of 2020, knowing God keeps me grounded. He truly provides me with a sense of warmth, of love, and protection. 

That said, it doesn’t mean I don’t miss my family. My friends. My co-workers. I definitely miss the touch of loved ones, their hugs, and the times normally spent together. It doesn’t mean I wasn’t sad when we as a family weren’t able to celebrate my mother‘s 82nd birthday with the usual family meal, cake, and song. Yet we adapted. We celebrated with virtual hugs, a song over the phone, and the reality that soon life will return to normal.  

We are blessed, because we are alive! So my advice is extremely simple. Go, live your life, live it to the fullest, enjoy everyday, and make the most of your time, don’t dwell on the “what-if’s”, because that is just as much a dream as if you had been sleeping. Instead, focus on the “what-are’s”, they are so much easier to digest, to live! Soak up the love of your loved ones, and if you can’t physically touch them, touch their hearts with a phone call, Skype, FaceTime, or better still...a letter(?). Be productive, and take joy in knowing that you are blessed, that you are living, that you are alive!  

Our lives are most likely to forever be impacted by the COVID-19 disease, but it will not stop the love. It will not stop family connectedness. It will not stop us. Yes, some of us may forever remember this year, it will definitely present an air of sadness for many, as there will likely be huge celebrations for others. It is life. It is an adventure. It is worth living, and regardless of those immense successes or those deep valleys, we as a world continue.  

So go, “Live...and, Love Living Life!

Kirby Lewis, 59, lives in Inwood, West Virginia. He was diagnosed in 2012 with stage 2 breast cancer. He recurred in 2016 and is now living with stage 4 (metastatic) breast cancer. Kirby is a a semi-retired graphic artist.

Kirby Lewis

‘Social media is such a powerful tool’

By JASON GREENSPAN

One thing I’m doing during this time is doing a lot of video conference calls. This includes for work and for family. It’s been tough staying in the house constantly but I’ve been getting used to it slowly. 

I’ve been watching a lot of movies and television but I’ve also been spending a lot of time with family. I’m spending time with my family down in Florida so the weather is phenomenal!

I’ve been trying to use Snapchat more as well to connect with friends. Social media is such a powerful tool during times like this and I’ve tried to continue connecting with friends on there whenever possible.

Being connected with each other is so important, honestly to keep our sanity during all of this. Not that many people discuss mental health but it’s so important. 

Unlike most people, those who have had cancer know quite well about being extremely careful with their health. During chemo, you have a weakened immune system and can get sick much easier than those who aren’t in chemo. 

You also have to isolate yourself for this very reason. Because of this reason it’s so important for people in the cancer community to continue staying connected because we can relate with others in a similar situation. 

Man Up to Cancer is doing an amazing job with this with their Zoom calls and posts on social media to engage everyone. Keep up the great work guys! I’m so glad to be part of it!

Jason H. Greenspan, 26, of Rockville, Maryland is a testicular cancer survivor. As an event planner, Jason has organized the largest simultaneous self-check for testicular cancer, which made him a Guinness World Record Holder. He is the co-founder of the social media campaign and day: National Ball Check Day.

Jason Greenspan