Love and Well Wishes from the Twitter Community
- Julie Rohr received messages of love and support from some of her favorite actors this week after her friends shared her cancer story on Twitter.
- Deadpool actor Ryan Reynolds, Schitt’s Creek star Dan Levy and comedian Rick Mercer were among the stars to send supportive messages to the cancer warrior.
- Rohr is battling leiomyosarcoma, or LMS, is a type of rare, aggressive cancer that grows in the smooth muscles. Most often, it occurs in the abdomen or uterus.
Julie Rohr was diagnosed with Leiomyosarcoma in 2015. This rare type of cancer that grows in smooth muscles has taken a toll on Rohr, and she announced she would be moving to hospice care last week. But with the help of some loyal Twitter-savvy friends, Rohr’s story reached some of her favorite actors who sent her video messages of love and support in response. The star-studded chain of responses included the likes of Deadpool’s Ryan Reynolds, Schitt’s Creek’s Dan Levy, comedian Rick Mercer, among others.
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Ryan Reynolds’ video message was another touching response to the tremendous Twitter takeover.
“Oh hey there Julie, it’s Ryan Reynolds. I just wanted to send you this little video and let you know that I’m thinking about you,” Reynolds said. “One of the things that struck me about your story is that you are beloved by so many people. Enough people that that message got all the way to me out here in Boston. Anyway, I wanted to send you lots of love, I know you’re going through it. Stay strong I hope I get to meet you in person one of these days.”
When Rick Mercer added his voice to the chorus of support, he also applauded Rohr’s friends for turning “the entire Twitterverse upside down.”
“You’re clearly a very courageous individual who has a lot of friends who love you very much,” said Mercer. “I wish you only all the best. Be strong.”
Needless to say, Rohr was amazed by all the outreach. When her friend took a video of her reaction to Dan Levy’s message, she was left almost speechless.
“That’s so beautiful,” she said in tears. “Thank you for making that happen.”
Understanding Sarcomas
The term sarcoma is used to describe an array of more than 70 rare cancers that begin in the bones and the soft tissues. This diverse group of diseases accounts for only about one percent of tumors in adults and just over 10 percent of tumors in children. The main symptom of sarcoma is a slow-growing, painless mass, making it harder to detect until the disease has progressed to later stages.
“Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, previously told SurvivorNet.
Shepard went on to explain that diagnosis usually occurs when the tumors are larger.
"Soft tissue sarcomas are typically painless," Dr. Shepard explained. "Bone sarcomas may be mistaken for orthopedic injuries. A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. Patients who do have symptoms mustn't be dismissive of them."
What is Leiomyosarcoma?
Leiomyosarcoma, or LMS, is a type of rare, aggressive cancer that grows in the smooth muscles. According to the National Cancer Institute, the smooth muscles are in the hollow organs of the body, including the intestines, stomach, bladder and blood vessels. In females, there is also smooth muscle in the uterus. These smooth muscle tissues help move blood, food, and other material through the body and work without you being aware. Most often, LMS occurs in the abdomen or uterus.
Creating Community during a Cancer Battle
During a cancer battle, it's important to know that you are not alone. There's a community out there for you to be vulnerable with, if you'd like, and connecting with people as you battle the disease can make a world of difference. Julie Rohr has some amazing friends that shared her story across Twitter to show Rohr how many people were supporting her and she's definitely not the only to look to social media for extra support.
Kate Hervey is another cancer warrior who has touched many people by sharing her story. A young college girl, she was shocked to be diagnosed with synovial sarcoma, a rare type of cancer that tends to form near large joints in young adults, after seeing her doctor for tenderness and lumps in one of her legs.
Hervey, a nursing student at Michigan State, had to handle her cancer battle during the COVID-19 pandemic and scale back on her social activities as a high-risk patient. That's when she turned to TikTok as a creative outlet, and inspired thousands.
Inspiring College Student, 20, Builds Community on TikTok Sharing Her Cancer Journey During COVID-19
"One thing that was nice about TikTok that I loved and why I started posting more and more videos is how many people I was able to meet through TikTok and social media that are going through the same things," she says. "I still text with this one girl who is 22. If I'm having a hard time, I will text her because she will understand. As much as my family and friends are supportive, it's hard to vent to someone who doesn't know what it's really like."
Hervey is now cancer-free, and says she couldn't have done it without the love and support of her TikTok followers.
"I feel like I've made an impact on other people and they have made an impact on me through TikTok, which is crazy to say. I can help people go through what I've been going through as well." She has graciously agreed to allow SurvivorNet to use her content in order to help our community.
So while sharing your story across the Twitterverse might not be your thing, it's important to consider opening up to others during a cancer battle. Even if it's with a smaller group, you never know how much the support can help you or help those you share with unless you try.
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