Though I’m a young adult cancer survivor, having been diagnosed with Hodgkin’s Lymphoma at the age of 24, I first heard the words ‘you have cancer’ said to my mother 2 years before my own diagnosis.
Continue readingSurviving As A Caregiver
Finding Grace Through Grief
The lesson I’ve learned from all of this tremendous grief is to show yourself some freaking grace. Give credit that your loved ones know how you feel, that the appreciation you have is known, and that while you’ll always wish for more time, it’s okay that things were left where they were.
Continue readingSurvival Is Insufficient
Now there is scientific research showing that the young adult cancer population, aged 18-39, is the most isolated age-group who experiences cancer, and that this isolation is linked to all sorts of quality of life issues. It affects survival rates, reintegration into normal life, and a host of other things. There is data showing that surviving cancer is not enough, we must also be helped to thrive. There is data showing that survival is insufficient.
Continue readingRing Theory
Have you heard of Ring Theory? It’s a fairly simple concept of support and communication that can be extremely helpful for cancer patients and their loved ones.
Continue readingGrief to Gratitude: A Young Adult Cancer Yoga + Mindfulness Workshop
This 6-week program will normalize grief and help you tune-in and connect to your body, mind, and soul through yoga, breathwork, meditation, and other contemplative practices. We will join together as a community to discuss, process, and move through grief to find our inner GPS and sense of self. Together we will focus on life as it is now in the present moment, after a cancer diagnosis, compared to the life once imagined.
This workshop will have a 15 young adult cancer patient, survivor, and caregiver capacity, and will meet for 2 hours starting on Monday, March 22nd starting at 4:30 pm PT / 6:30 pm CT / 7:30 pm ET! This is a 6-week program and a commitment to each week is important for a safe space and cohesiveness of the course.
Who: 15 young adult cancer patients, survivors, and caregivers.
When: Mondays, 6 weeks, starting Monday, March 22nd @ 4:30-6:30 pm PT / 6:30-8:30 pm CT / 7:30-9:30 pm ET via video chat.* (*US time zones…please confirm what time this means for where you live).
How does it work? Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***
You Can Tell It Anyway You Please
I recently came across this quote from one of my very favorite authors, Jandy Nelson. She wrote my favorite book of all time (and I do a fair amount of reading…), I’ll Give You The Sun. (Anyone here track their reading and the books they want to read on Goodreads? If you do, feel free to friend me!) Today, I thought I’d share this nugget of wisdom from Jandy.
You can tell your story any way you damn well please.
It’s your solo.
– Jandy Nelson
Thinking About Death
I, like many young adult cancer survivors, think about death a fair amount. The wondering of ‘what happens next’ kind of freaks me out if I really let my mind sink into it…ok, not kind of…really freaks me out!
When my mother was dying, we weren’t allowed to talk about that big elephant in the room: What happens if the treatments don’t work? I feel like I missed out on this giant opportunity to learn and grieve and bond while still protected by my mom’s presence. My family acted as if she everything was a-ok, as if she wasn’t dying, up until the last week of her life when she couldn’t talk much anymore. I wish I could know what she hoped for me and what she hoped for herself, what she’d found worthwhile and worthless, and what she loved the most. I wish I could ask her questions about being an adult, about being human, and about facing something alone.
Joanna, from a Cup of Jo, recently wrote about this very subject.
“The fear of flying often kicks in around age 27, studies reveal, when people start to grapple with their own mortality. They don’t feel invincible like they did as rowdy kids and hormonal teenagers. I totally get that, don’t you? “As life experiences build up, the reality of our own vulnerability as human beings can set in,” says New York-based therapist Nathan Feiles.”
And cancer is way more of a reality check than a fear of flying, right? We face a disease that kills and then we keep on living with that knowledge. Sometimes I feel as if I have looked death in the face every day since my mother’s diagnosis and my own. At first, it made me frightened of everything. Now, every once in a while, I get moments of fearlessness. I have lived and I will die but I am proud of who I am and what I’ve done.
What about you? Do you think about death?
There’s A Chance To Hang With Young Survivors Tomorrow!
Hey there! Looking for a chance to hang out with other young adult cancer patients, survivors, and caregivers? Want to do that without leaving your house? Have no fear, Lacuna Loft has the hookup!
Tomorrow, Feb. 21st from 5-7 pm PT / 7-9 pm CT / 8-10 pm ET, Lacuna Loft will host one of our bi-monthly YAC (Young Adult Cancer) Hangouts! They are online, via video chat and super informal. If you sign up, we send you a link via email to join the video chat. You’ll need internet (or data if you’re out and about) and a webcam, and that’s it! (Sometimes I get questions about webcams…most computers, smartphones, and tablets have one built in but if not, they are super cheap to buy one and plug it into a USB hole in your computer!)
Interested in joining? Sign up here!
Join Lacuna Loft For A Caring For the Caregiver App Chat
Lacuna Loft’s CEO, Mallory, along with Chasing Rainbows: Young Adult Cancer Advocacy‘s Pat Taylor are going on Gryt Health’s app to discuss Caring for the Caregiver on December 12th at 6 pm PT / 8 pm CT / 9 pm ET! We’ll have a lively discussion in the Caregiver Chat Room about types of caregivers, recognizing the importance of self-care’, how to self-care as a caregiver, building a stable community of caregiver support, and more.
Pat Taylor became an AYA cancer advocate when her daughter, Sara, age 23, was diagnosed with cancer back in 1997. Addressing the lack of support resources for her peers and caregivers, Sara and Pat produced and distributed two films, Sara’s Story and Chasing Rainbows Young Adults Living With Cancer, and Chasing Rainbows Young Adult Cancer Advocacy was born.
Since then, along with other advocates and their support resources, Pat has watched the AYA Cancer Voice grow from a tiny whisper to empowered roar! Caregivers helped make this happen.
As a Parent and Advocate, Pat joins this Gryt Health Caregiver Chat, to share and explore with other Caregivers the immediate needs and ongoing challenges we face while navigating the unpredictable cancer storyline with our loved ones. Self Care is the key to being the kind of Caregiver we strive to be. How do we make it so? Join Pat to learn more.
Mallory Casperson was forced into the world of young adult cancer caregiving in graduate school when her mother was diagnosed with cancer. She was fortunate enough to serve as one of her mother’s primary caregivers during the last months of her life.
Two month’s after her mother passed, Mallory was diagnosed with cancer herself. Several years into her survivorship, Lacuna Loft, a nonprofit organization offering online support programs to young adult cancer survivors and caregivers, was created to connect young adults facing cancer together.
Understanding young adult cancer from both the caregiving and the survivor experience has allowed Mallory to become a strong advocate in the young adult cancer community. Self-care is key to any caregiving experience and Mallory is excited to talk caregiving with Gryt Health!
When To Say When
When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.
In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.
Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.
We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.
This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.
Deciding to stop cancer treatments is a difficult and painful decision. Have you experienced something similar?
This post was originally published on Lacuna Loft back in 2014 and is one of our most read!