Goldie’s Evening In The Meditation Workshop

man meditating

This post is by Goldie, a young adult cancer survivor who recently participated in an evening of the Meditation Workshop with Lacuna Loft and Help with Hope!  The Meditation Workshop happens each first Wednesday of the month.  You can learn more and rsvp here!

I signed up for the Lacuna Loft monthly meditation webinar tonight, and through the “busy” schedule I created for myself for the day, forgot. Mom reminded me that it was happening at 9 and I was worried we wouldn’t be able to shower and do the nightly routine in the usual fashion. Timing aligned perfectly and I was even able to clean my line before the class started.

I logged in and was surprised I was the only one there but it made me extremely comfortable. I opened up about my story and my journey through my recent stem cell transplant and with meditation. Pre-cancer, I had done an 8-week mindfulness-based stress reduction class for depression and anxiety. Did I ever use those techniques again? No, despite my therapist trying to get me back into mindfulness practices. After my relapse in December, I did attend a full-day retreat with the same instructor which was excellent, and I got to update her on my cancer journey. Did I continue with the practice? No. A handful of times when I was inpatient if I couldn’t sleep, I logged into the Headspace app. But not until I got discharged on October 15th was when I started meditating daily.

In the webinar, the facilitator was so kind and engaged in my story, asking meaningful questions. Since I was the only one on the line, I had the ability to the express what my needs were: I have been struggling with my anxiety, and cope with my diagnosis/recovery by controlling everything else around me in my life – I just need to relax. Since I was alone, I also had the ability to get comfortable with the position, turn off my phone, and ask about time (timing is a huge source of anxiety for me).

The facilitator recommended we try focusing on the Chakras, which sounded amazing because of my exposure to Reiki at Dana-Farber/Brigham and Women’s Cancer Center. I never really knew what they were or where they were, but know that’s what the Reiki masters tap into as they hover over parts of your body. I loved learning about all of them and the fact that they have colors of the rainbow. Before learning to meditate, when I used to have trouble falling asleep, I would imagine myself breathing in and out colors, and it would help relax me. I was really excited to do more research after the session, especially on the “golden” one. What I learned later was incredible and completely a description of what was going on with me since getting discharged from the hospital. It was honestly so real it was creepy, but having had Reiki 4-5 days per week inpatient and this Lacuna experience could have been a major impact.

Since I have been trained in mindfulness meditation, I was able to guide my own breathing and slow down or speed up to work with my body. I laid flat with palms down to the ground, in the dark. I tend to struggle with not being kind when I get unfocused with racing thoughts, which is very common and covered often in training beginners. I was so proud of myself because I was so focused and engaged that I only had one or two thoughts off track and was able to be kind and patient when I noticed it. I loved that it ended with namaste too. It reminded me how much I miss yoga.

Overall, the experience was amazing and accomplished its purpose of grounding me. I even was inspired to create a mantra for myself after it. My boyfriend called me shortly after, and he was telling me a story and his storytelling tends to get me revved up. I had the ability to calmly tell him to please talk in a different tone of voice because I was so calm from the class, and he respected it immediately. I hope my story can inspire you to join in on one of the monthly sessions!

Book Club: A Monster Calls, pages 86-107

grandfather clock

Welcome to the comments and discussion of the Young Adult Cancer Book Club!  We are reading A Monster Calls by Patrick Ness, after an idea inspired by Siobhan Dowd.  Catch up on pages 1-22, pages 23-43, pages 44-65, and pages 66-85.

Let’s get started!

Commentary by Vinesha:

Reading these three chapters, I see Conor coming more into his own. He seems to be finding his voice through the chaos swirling around him. In the first section, it was refreshing to see Conor being vulnerable and open with his dad — having those difficult conversations. These kinds of chats when trying to voice my deep, challenging thoughts are a struggle – and this was the case during my cancer journey too – and so I admire Conor for being able to share things on his mind, even amidst the difficult circumstances surrounding him. It’s unfortunate his dad didn’t fully understand and also made light of the implicit worries laced in Conor’s words when he was sharing his thoughts on the situation and the yew tree monster to his dad. I’m sure Christmas celebrations are the furthest thing from Conor’s mind, except that it was yet another uncertain day ahead that he wouldn’t know how his life would look.

Conor ends up alone at his grandma’s and we see fear, anger, and trying to hang onto control as he dismantles some of the clock. Seeing this taking place, the yew tree dream state takes over again as Conor is given support, handed control, and asked (given permission) to release his aggression, feelings, and anger. Conor was finally validated for the journey he was going through, which the yew tree has had time to intimately understand.

It will be interesting to see the aftermath of the household destruction in relationships with his family. I’m also taking note of how it will impact Conor to be given some grasp of control when his life is seemingly falling apart.

Commentary by Brittany:

“Champ”

In this chapter, Conor’s dad arrives. It’s a big moment since his dad lives in America with his new family. It seems like everyone knows what is going to happen but Conor. Conor is in denial. He knows something is up but he just doesn’t want to believe it.

Conor tells his dad about the yew tree to try and stop his dad from talking about the future. He just wants everything to be the same and not change.

“Americans Don’t Get Much Holiday”

Conor’s grandma is in the hospital to visit his mother and his dad is going back to America. Conor is upset to hear the news of his dad’s short visit. He must feel abandoned since his dad is leaving him. He has no one to run to. When he gets back to his grandma’s house and is all alone, Conor’s takes out some aggression on his grandmother’s clock.

At the end of the chapter, the monster arrives.

“The Second Tale”

The monster comes back to tell Conor the second story. I really love the second story. The story is about the Apothecary, the parsonage, and medicine. The Apothecary wants the yew tree so he could use it for medicine but the parson wouldn’t let him have access to it. The parson didn’t agree with the Apothecary’s ways. When the parson’s daughters grew sick with no cure in sight, he begged the Apothecary for help. The Apothecary remembered the past and declined. The daughters died that night.

 

Join in next Monday for comments and discussion on the next 20 pages of the book!

Thanks for joining us for pages 86-107 (“Champ,” “Americans Don’t Get Much Holiday,” and “The Second Talk”) of  A Monster Calls by Patrick Ness!  Join in next Monday for the next chapters of the book!

We will talk about a few chapters each Monday until the book is done.  If Monday happens to be a holiday, then the post will publish on Tuesday.  Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  We’ll also have a video chat book club discussion at the end!  Join in, in the comments every week!  Also, there will probably be spoilers so read along with us!

Excited about the young adult cancer book club?  Have any suggestions for future reads?  Let us know!

An Update On Chemo Brain

coral reef

Chemo brain!  We know it.  We hate it.  And Cure Magazine says the science is there to prove it is real!

“Talk with almost any cancer survivor, and he or she is likely to bring up the topic of “chemobrain,” that  that fuzzy, murky state that patients blame for impaired memory. When physicians first began hearing patients complain about chemobrain, they may have wondered whether it truly existed. As time has passed, they may now be wondering why science hasn’t found a solution.”

Read more here!

Book Club: A Monster Calls, pages 66-85

hospital waiting room

Welcome to the comments and discussion of the Young Adult Cancer Book Club!  We are reading A Monster Calls by Patrick Ness, after an idea inspired by Siobhan Dowd.  Catch up on pages 1-22, pages 23-43, and pages 44-65.

Let’s get started!

“Understanding”

Commentary by Megan:

Lily is trying to be a friend to Conor and is even willing to forgive Conor about getting her in trouble at school. He doesn’t accept her kindness, and it is obvious he doesn’t forgive her for telling friends at school about his mother’s illness which has led to him becoming isolated and “invisible.” The bullying continues as Conor is punched by Harry in the schoolyard. This time, Lily doesn’t intervene. Harry continues to be threatening to Conor but Miss Kwan interrupts. She continues to show kindness and perhaps pity to Conor; however, it appears that Conor doesn’t want kindness or pity. He wants everything to be normal and for people to treat him normal.

Commentary by Krystina:

This chapter focuses on a few situations where there is either a lack of or clear understanding from those involved.

The first situation surrounds Lily is trying to be understanding of Conor’s behavior from the day before at school, when he lied and allowed her to get into trouble. Lily makes mention of her mum saying people need to “make allowances” for Conor, because of what was going on with his mum. Conor blames Lily and her mum for the way he is being treated by everyone, because Lily and her mum were the ones who spread the news about his mum being sick. The next situation occurs at school and involves, Conor and the bullies; Harry, Anton, and Sully. After Conor is punched in the stomach by Harry, Sully tries to turn Conor around by his shoulder. Harry stops this and says, there is an understanding between himself and Conor, that Harry is the only to touch Conor. Conor replied by nodding and internally agreed that there, indeed, was an understanding between the two of them. The final situation includes Miss Kwan and Conor. Miss Kwan explains to Conor that she understands that though Harry may be charming, she knows he is still a bully. Miss Kwan, also wants Conor to know she understands the reason he may be keeping quiet, is due to his mum’s situation. She tells Conor if he needs anything, her door is always open, but though Conor can hear the “care”, he didn’t want to accept it because he didn’t feel deserving of it.

“Little Talk”

Commentary by Megan:

Conor’s grandmother tells him he will be staying with her at her house as his mom is in a lot of pain and going to be admitted to the hospital. She is in pain because the treatment isn’t working. He also finds out his father is coming to visit from America. He is going to leave his “new” family in America to come visit. Conor asks his grandmother why but doesn’t get an answer. He goes to see his mom, but she is resting in his bed instead of her own. She reassures Conor the doctors will make her pain better while she is in the hospital. She also tells him treatment is not working, but she is sure to provide reassurance that the doctors will just “adjust” her treatment again- just like last time. He tells her she can tell him if that’s not true, which may be a sign he is more open to the reality of the situation. This appears to be a first for him. She tries to comfort him by telling him to watch the yew tree for her while she is gone so it is there when she gets back. This is her way of showing she will come back home from the hospital, just like last time.

Commentary by Krystina:

Conor finds out his mum is going to the hospital because she’s still in pain. He learns that he will be staying with his grandmother for a few days, which he is not happy about, and that his father is coming to visit from America, which he is extremely confused by. Conor’s mum finally talks to him about her current condition. She mentions that the treatment isn’t working, but assures him that there are plenty of other things that the doctors will try, and that he is not to worry. Conor, not entirely convinced, responds by saying “if there’s more, you can tell me”. At which point, his mum does not reply but hugs him tight and then makes mention of the yew tree.

“Grandma’s House”

Commentary by Megan:

The monster hasn’t showed up for five days since being at grandmother’s house. His grandmother doesn’t even have a real yard- and no room for a yew tree. Conor finds himself alone in his grandmother’s house and waiting on his father to arrive. And maybe waiting on the monster to show up? Conor goes to the pristine sitting room and reads a book. No monster. Finally, his father arrives and Conor seems to have a genuine, wide smile for the first time in quite awhile.

Commentary by Krystina:

Conor notes that the “monster” has not visited him in five days, since being at his grandma’s house. His grandmother keeps referring to the room Conor is staying in, as “his” room. I think this is her way of trying to prepare Conor for what is to come. However, Conor hates this room more than anything else in her house. At this point, I feel Conor is still resisting accepting his mum’s current situation and the possible consequences that may result. As Conor waits for his father to arrive, he checks under his grandmother’s rug, for any signs in the floor of the “monster”. The doorbell rings and with much excitement, Conor opens the door. The chapter ends with Conor hearing his father say “Hey, Son” and Conor responding with a smile bigger than it had been in a year.

 

Join in next Monday for comments and discussion on the next 20 pages of the book!

Thanks for joining us for pages 66-85 (“Understanding,” “Little Talk,” and “Grandma’s House”) of  A Monster Calls by Patrick Ness!  Join in next Monday for the next chapters of the book!

We will talk about a few chapters each Monday until the book is done.  If Monday happens to be a holiday, then the post will publish on Tuesday.  Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  We’ll also have a video chat book club discussion at the end!  Join in, in the comments every week!  Also, there will probably be spoilers so read along with us!

Excited about the young adult cancer book club?  Have any suggestions for future reads?  Let us know!

Ever Have A Really Bad Day?

fishing boats

Do you ever have really bad days?  You know the kind I’m talking about?  The kind of day where something happens early on that knocks you off balance, then you forget your power cord at home and only figure it out once you’ve commuted to work, then you learn about a recent relapse of a friend’s cancer, then the internet at work sucks and you can barely do your job, then you miss the train heading home and end up arriving late at your next meeting, and on and on and on?

Yea, me too.

What do you do to *fix* these days?

Seriously, chime in.  I have my own ways but everyone has different techniques and creating a list would be so helpful!  I take 30 minutes to myself, take a hot shower, go for a run, or make myself a hot cup of tea.  I also try to be kind to myself while taking that time for myself and trying to reset.  When I’m stressed the whole time worrying whether I’m wasting time…it doesn’t help.

What do you do to fix a day that started off wrong? Fixing bad days is a matter of self-care and we’d love to hear how you show yourself some love.  Let us know!

10 Life Lessons Learned From Running

raising funds for lacuna loft

This post is one of our most read so we thought we’d share it again with you today!

Life lessons show up in the most unlikely places.  These are the 10 life lessons I have learned from running…

1.  drink water
Being hydrated just makes your whole day that much better and more manageable, running or no running.  Seriously!  I carry around a liter nalgene water bottle with me at all times.  My goal is to drink at least two of the full bottles each day.

2.  if you eat a doughnut for breakfast, eat something healthy for lunch

Ever try and do something active after only consuming carbs, fat, and sugar for breakfast?  Yea, it doesn’t go well.  Still, I didn’t used to eat doughnuts until after I was diagnosed with cancer and now they are one of my favorite Saturday morning treats.  And since everything is better in moderation, I balance out a morning of sugary wonder with a healthy and balanced lunch.  Know what is an easy and healthy balance to a morning of sweets?  Green smoothies!

3.  some days are good and some days aren’t

Some days you’re going to wake up on the wrong side of the bed for no reason, and some days life will be smooth sailing.  This is how it goes in running and in life.  Be kind to yourself on the off days…tomorrow will be much better.

4.  some things in life hurt and some things in life don’t

Running is tough, no doubt about it.  No ifs, ands, or buts.  Living through cancer treatments and into survivorship is hard too.  Sometimes life will be easy and sometimes it won’t be.  You can do it though…and we can help whenever you need it.

5.  if it is raining, wear rain gear.  If it is sunny, wear sunscreen

Preparing for what lies ahead is always a good plan.  In running this means planning for the weather and condition where you’ll be hitting the pavement or the trail…in life, this means figuring out what you need and trying to plan ahead to take care of yourself.  Ask for help, remember sunscreen, and be nice to yourself.

Read the rest of the 10 lessons here!

 

P.S.  Life lessons learned from my dogs

Join The Next Creative Art Workshop!

rope coaster

Update:  The workshop is now full.  Please sign up using the interest form below to be notified when the next creative art workshop is announced.

Lacuna Loft’s online Rope Coaster Workshop is the 15th in our #LetsMakeStuff @LacunaLoft series of online workshops!

This workshop is designed to teach you the easy craft of making nylon rope coasters. If you’ve never done this before, you’re in luck! Mallory will go step-by-step through everything! If you love crafting with rope and you’re a real pro already, no problem! While some of the tutorial will be more than you need, the rest of the time spent stitching and being artsy with other young adult cancer peers will be totally worth it.

Who: 15 young adult cancer survivors and caregivers.

When: Thursday, October 18th @ 5:30 pm PT / 7:30 pm CT / 8:30 pm ET via video chat.

How does it work? We’ll send you all of the materials you need to participate! 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.***

 

Image via A Beautiful Mess.

Creating Art Heals

carol anne art

Today we bring you a piece by a courageous survivor and writer, Carol Anne.

Lately, I’ve been thinking a lot about how important art and creativity have been to my recovery. I honestly believe I am physically and mentally healthier because of the creative endeavors I am privileged to be a part of.

Last summer I walked across the street to the cancer center and joined a cancer survivors art discovery workshop. I only got to go once before Chuck was too sick for me to leave him home alone. But, then in October I was blessed with an invitation to join an online creative workshop my friend was leading for Lacuna Loft, an online cancer support project for cancer survivors and caregivers ages 18-39. I’m actually older than 39 so, shhhhh….. don’t tell. Actually, I think they’ve extended the age to 45 so, I’m good for now. No, I won’t tell you how old I am, a lady never tells her age. I’m both a cancer survivor and a caregiver, though Chuck really didn’t live long enough for me to be a caregiver for very long.

In the last two years my husband battled a very aggressive form of kidney cancer, my cancer returned and took some of my eyesight with it, Chuck died, and I am yet again facing the possibility of my cancer being back or the radiation that cured it damaging my brain. I believe I could not get through these days without the art and writing programs I participate in. It took a while after Chuck passed away for me to get back to participating in Lacuna Loft’s creative art workshops, Let’s Make Stuff and even longer to make it back to the cancer survivors art discovery workshop at the cancer center across the street. When I finally did get back to creating art and being part of groups creating art, life started getting better, I started getting better.

I’ve been seeing a therapist since last June. I highly recommend seeing a therapist as a form of selfcare, but I also highly recommend art, and writing, and journaling as means of selfcare. The ninety minutes I spend each week at the cancer survivor’s art discovery workshop are some of the very best of my week and the two hours I periodically spend taking part in the Lacuna Loft Lets Make Stuff creative art workshops allow me to reach out of myself and beyond the grief and loneliness and fear. I’m an incredible multitasker, and by multitasker, I mean I’m fabulous at worrying while I clean the house, pay the bills, cook dinner, etc., etc., etc. You get the picture. But the time I spend painting, or drawing, or working with clay, or writing I am out of my own head. I am focused on one thing and one thing only, creating. I am in the moment. The “What if” monsters are silenced, the voices in my head are quiet, I am quiet and still on the inside. The act of creating somehow puts to sleep the anxious, loud, worrisome parts of my brain while I make art or write. I once told my therapist that I need to be at a full stop at some point or I’m going to go crazy. While I make art or write I am at a full stop; I can breathe, I can be still, I can be at peace. Art heals. And, it’s not just the art, for me it’s the community of being with other survivors for a while.

You can, like me, have the absolute very best support system of family, friends, and extended family who’ve adopted you as one of their own, but sometimes you just need to be with those who’ve been down the roads you’ve traveled and seen what you’ve seen and experienced what you’ve experienced. You don’t even have to talk about what you’ve survived or are currently surviving, it’s just comforting to be with what I can only describe as a tribe. Time spent with fellow warriors is also healing. It’s not necessary to be part of a group to reap the benefits and healing that comes from creating art. The doodling, and craft projects, and blogs I write at home are equally calming and quieting. For me, the groups and community are a nice added bonus.

I’m visually impaired so, sometimes I cannot keep up with the others, but I make the best of it and both the beautiful people at Lacuna Loft and the amazing women in my art discovery workshop are kind, and gracious, and helpful. I don’t have to be perfect or capable to create art and be part of a community, I just have to be there. Hell, I don’t even have to be good, as you’ll see in my shared “artwork.” Oh yes, I use that term as loosely as it has ever been used. Trust me on that. You’ll see. But in art, and creativity, and selfcare perfect doesn’t matter; doing, and being, and creating matter.

Through therapy and taking part in artistic endeavors I’ve stopped being afraid to try something I’m certain I won’t be good at. And, you know what? Sometimes I am actually better than I ever imagined I could be at something new, and that feels pretty darn good.

Art isn’t just markers and crayons and glitter and paper, art is also words, and feelings, and expression. I was always sad that I couldn’t make it to the cancer survivors writing workshops at the Hospital of the University of Pennsylvania because I don’t drive and more than eighty dollars to go back and forth in an Uber to a free writing workshop seemed a bit excessive to me. So, I was thrilled when Lacuna Loft posted the signup link for their summer session of Unspoken Ink, an online creative writing workshop. As I’ve said over and over and over again, writing saved my life, writing gave me something to be accountable to during my first cancer journey. That I did not write about Chuck’s cancer and my second go around with the big C and my quest to kick Larry (my tumor) out of my head lessened my wellbeing and my understanding of what was going on around me and what was happening to me. I never took the time to explain things to myself. I never took the time to be accountable to how I was feeling or where I was at in the process. I was just going through the motions, putting each fire out as I came upon it. I didn’t have a deeper understanding of what was going on; possibly because I didn’t want to understand deeply enough to feel the feelings that came along with truly knowing and understanding that nothing was stopping Chuck’s cancer; it was an unstoppable force of destruction. I didn’t want to really understand that not only had my cancer come back and robbed me of a triumphant five years cancer-free party and return to normal life but also my vision, and that there was never going to be a “normal” again. I think it was too terrifying to deeply understand that my husband was dying and I was disabled. But, unconsciously burying those emotions, denying my reality, not sitting down at the end of each day, processing and explaining to myself the events of each day robbed me of stability and sanity, I just didn’t know it until the great Kindle meltdown while I was in the hospital recovering from brain surgery last May.

Therapy, and the act of making art, and writing, and taking time for selfcare have allowed me to start processing my emotions again and to explain to myself where I am in this process. Since joining the Unspoken Ink group, I’ve written a few pieces that have helped me write about my grief and my search for faith in all this sickness and loss. In the spring I wrote about the small everyday things that are much bigger than we give them credit for, sometimes getting out of bed is the biggest achievement of the day. You can read it on Lacuna Loft’s Young Voices blog.

The next few blogs are going to be versions of pieces I wrote in the Unspoken Ink group. Some will be the exact words that flowed during the group and others will be cleaned up, edited, and added to versions of pieces I wrote during the group.

Art heals… Art saves… Art gives voice to emotion and feeling… Art is life…

Image by the author, Carol Anne.

This post was originally published on SoapBoxVille. Check out the original post for some original art by the author

Join The Next Workshop To Help Lacuna Loft!

watercolor paint

Update:  The workshop is now full!  Please sign up on the interest form below to be notified the next time a Creative Art Workshop is announced!

Lacuna Loft’s online Create A Piece Workshop is the 15th in our #LetsMakeStuff @LacunaLoft series of online workshops!

Join Lacuna Loft for a unique workshop experience! This fall Lacuna Loft will be hosting our Inaugural Fundraising Gala (stay tuned for more info on that!). This is your opportunity to give back! Create a one of a kind piece that represents what Lacuna Loft means to you, your cancer journey, or how you’ve healed after your diagnosis. We’ll send you what you need! Aerial will walk you through different processes, and you can hang out while getting creative with CEO and founder of Lacuna Loft, Mallory, along with other young adult cancer survivors and caregivers!

After the workshop, put your one of a kind masterpiece in your provided envelope and ship it back to us! You get to keep the supplies! We’ll proudly display your artwork and sell it to gala attendees. All proceeds will benefit Lacuna Loft.

Who: 15 young adult cancer survivors and caregivers.

When: Tuesday, September 18th @ 5 pm PT / 7 pm CT / 8 pm ET via video chat.

How does it work? We’ll send you all of the materials you need to participate! 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.***

Sponsored in part by a grant from Shire.

Meet Vivibot – by HopeLab

vivibot chatbot

Adjusting to life after cancer is not simple. It can be stressful, frustrating, and isolating. Undergoing cancer treatment is grueling, so it’s understandable why many survivors feel like a different person coming out of it. Going through such an intense and unexpected life event can make you rethink who you are and who you want to be. It’s a lot.

Hopelab has been talking with young survivors, medical experts, and researchers to better understand the challenges of life after cancer and find ways to help (even just a little).

That’s why we’ve built Vivibot — a chatbot that was created specifically for young cancer survivors like you.

With her optimistic and spunky personality, Vivibot can help you generate a positive outlook on your future. Vivibot was designed to help cancer survivors learn helpful coping skills and hear stories from other survivors after treatment.

Here’s what some survivors are saying about Vivibot:

“I liked expressing myself to something non-judgemental, who could also talk back to me in kind words.” – Jennifer

“Many times we need to tell our story and frustrations without feeling guilty for shaving it we like to rant without thinking how it will impact the others” – Guadalupe

“I feel better and more positive after the demo.”- Jesse

“It made me recall/relive positive moments from the week and made me feel lifted.” – Maggie

Interested in seeing what Vivibot all about? Chat now on Facebook messenger.