Grief to Gratitude: A Young Adult Cancer Yoga + Mindfulness Workshop

woman on yoga mat

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

wall art

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

donna and mallory in dc

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!

dog on couch

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

hands

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

sleeping boy and kitten

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!

Caregiver Chronicles: Wes Body’s Lessons Learned Through Caregiving

wall art with heart

This post is by Wes Body, caregiver extraordinaire to SparklySurvivor:

“Sir, may I see some identification?”, I said to the man in the parking lot. “Sir, I have to check your name in our system- I need to see your ID.”, I repeated.

As you may have gathered from my statement above, I work as a police officer. This was not anything out of the ordinary for me to say and I was keeping my focus on the situation at hand.

Bzz…Bzz…Bzz…Bzz…

I look down at my phone for just a moment while maintaining good visual of the suspect.

It’s Nicole. She’s calling. She was supposed to get news about the tumor they recently found in her stomach.

I have to answer this. There is no way I can miss this call.

“Sir, stay right there, this officer will be here to keep an eye on you, don’t leave”, I said.

I step away.

“Hello?”, I said into the phone. I was expecting to hear my sweet wife, Nicole’s voice.

But crying is all I heard. Oh no. What happened?

“Honey…”, my wife whispered into the phone. “They think that I have cancer.”

Check out the rest of this piece where it is originally posted at SparklySurvivor.

What Is Your Origin Story?

young adult cancer stories

Our 4th Speaker Series talk focused on Lacuna Loft’s origin story…what brought Lacuna Loft into the world and how we do what we do.  And it got me thinking…we each have our own origin story!  Mine is deeply interwoven with Lacuna Loft and I shared a piece of it in the speaker talk.

Are you a young adult cancer survivor or caregiver?  Are you ready to tell your story to help someone else who is going through what you went through?

What is your origin story?

In the middle of the night, someone out there is wondering if they are the only one who has ever gone through young adult cancer.  They are feeling alone, isolated, and wanting to feel connected to someone who understands.  You can help someone, just like you, going through young adult cancer by sharing your story.

Your story matters.

We’d love to share your origin story.  Fill out the form below and share your voice!  We’ll contact you for your origin story!

Young Adult Cancer Hangouts In November

online young adult cancer hangouts

The Young Adult Cancer (YAC) Hangouts are back!  The online YAC Hangouts bring together young adult cancer survivors and caregivers each month in informal video hangouts where you can chat about anything you’d like.  Whether you’re talking about cancer or anything else under the sun, join together with other people who understand what it’s like to go through young adult cancer.  Finding your young adult cancer tribe can be challenging…we make it easy!

Our November YAC Hangouts are scheduled!  One of them is tonight, so sign up today!!!

Wednesday, November 8th from 5:00 – 6:30 pm PST / 8:00 – 9:30 pm EST.

Tuesday, November 28th from 5:00 – 6:30 pm PST / 8:00 – 9:30 pm EST.

Sign up below and we’ll send you more details!

 

How does it work?  After you fill out the form (above), you’re signed up for the YAC Hangouts!  These hangouts are informal and unmoderated.  There will be a Lacuna Loft volunteer always present as a guide for the hangout, but these video chats are not a support group and will *not* be led or facilitated by a healthcare provider.  If you need to talk with someone more qualified to handle any anxiety, side-effects, etc. please contact your physician.  Prior to each YAC Hangout, we’ll send you a link to the video chat that you’ll follow to attend.  The Hangouts have a “drop-in” policy so no need to alert anyone if you can or cannot make it that week.  Each YAC Hangout is open to any young adult cancer survivor or caregiver who signs up and is available!

What will you need?  A computer (or a smartphone or tablet), a headset with a microphone, and a webcam.

And, that’s it!  If you haven’t already, sign up and attend a YAC Hangout!

Speaker Series Talk: Learning To Live Life Post Cancer – Kim

living life after cancer

Our 2nd Speaker Series talk is live!  Check out Kim’s talk on Learning To Live Life Post Cancer in the video below!

It was really fun chatting with Kim about her role caregiving as a young adult after her sister’s cancer diagnosis. You’ll find great tips on learning to live life post cancer as a caregiver and much more!

To hear that my sister had cancer was an indescribable feeling. For me, the only thing harder than hearing those words, was learning to live life while going through it. The second hardest has been learning to live life post-cancer. As all consuming as cancer was and is, a tremendous power was gained when I chose to take back some control during one of the most uncontrollable situations that I will probably ever face. In doing so, I have gained a unique perspective that I hope will help others to do the same.

Psst…want to submit a topic for a future Speaker Series?  You can do so here!