Lamentations

rain on window

This piece was originally published at intima, a Journal of Narrative Medicine and was written by a fabulous writer and survivor, Diana.

I am not a pretty crier. It didn’t matter much before. To say that I was stoic was an understatement. I could count the times that I’d cried on one hand. Number every individual tear. I broke my wrist when I was six years old: wailed until my grandmother wrapped my arm in a towel, folded me within her embrace, and carried me off to an urgent care. I was bullied when I was twelve: I was too shy and two inches too tall for my jeans. I read too much. I took the “white people math class.” I hid in the bathroom at lunchtime, sniffling behind the stall. I argued with my mother at sixteen, my father at twenty. I loved a boy at twenty-three. He did not love me back. I cried. It never lasted very long. Tears came on suddenly but, like a shower of rain, quickly dissipated. I’d move along hurriedly afterwards.

I’m not quite sure what it was. Maybe the cancer. Maybe the stroke. Maybe breaking down, then building up again. But I am softer now.

It was too cold in the examination room. Artificial frigidity was the result of maintenance’s attempts to make up for the heat outside. I sat on a vinyl chair, waited for my surgeon to return, and tried to rub the chill out of my skin. Fluorescent lights hummed softly above me. My stitches itched. My leg shook. My stomach roiled. I had cancer. A fresh diagnosis to match the wound on my neck. My surgeon told me that we needed to talk, said that the results were in, told me that I had cancer, and then excused himself. I sat on the chair beneath a vent in the ceiling. Stale air ruffled my hair. It didn’t occur to me to cry.

Things move quickly when you are diagnosed with cancer. There is imaging and there is bloodwork and there are too many doctors to see. The tumor had grown slowly. As it had spread, as I started and then finished medical school, I developed the kind of denial that only doctors seem to have about their bodies. This coupled with a series of misdiagnoses had lulled me to complacency. Eventually I wasn’t able to ignore it anymore. I saw my primary doctor, had an honest conversation with her, and then the world started to turn more rapidly. CT scan, then angiogram, then surgery, then diagnosis. It was a cyclone and I stood at its center. It was easy to get lost inside of it.

…

Read the rest of the piece here!

Sign Up For An Open Write Night!

online writing workshop

Interested in checking out what it’s like to join the online Unspoken Ink Creative Writing Workshop before committing to 8 weeks of the group?  You’re in luck!  On November 19th from 5-7 pm PT / 7-9 pm CT / 8-10 pm ET we’ll be hosting an Open Write Night (aka Unorthodox Ink)!  You can spend an evening with other young adult cancer survivors and caregivers and do some creative writing while you’re at it.

Sign up today!

Where: *Online* video chat. We’ll send you more information about joining after you register. Please have a microphone headset and a webcam.

Who: Young adult cancer survivors and young adult cancer caregivers.

When: November 19th, 5-7 pm PT / 7-9 pm CT / 8-10 pm ET.

Sign up here!

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How does it work:

  • This workshop uses the Amherst Writing and Artists (AWA) Method.  The facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Though sharing is optional, hearing your own story and hearing someone else’s, teaches us about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what did we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.
  • Sometimes the prompts are about cancer, sometimes indirectly related to cancer, and sometimes not about cancer at all. Above all, the writing program emphasizes that we are more than a diagnosis.
  • Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

What Is It Like To Carry A Child?

ovary supression

Lately, the song by Peter Gabriel “I grieve” from the movie “City of Angels” plays on repeat when I see babies, baby clothes, little kids, blasted strollers and families in general while at the store, the mall, freaking Cracker Barrel.

I have to almost step outside of myself in order to NOT have a breakdown. Though some days are better than others, I can’t seem to fully accept this permanent loss.

What hurts the most is I will never have anyone who looks like me or inherits the way I tilt my head when I’m pondering or laughs like me.

As an only child, I have always enjoyed my own company. My imagination is huge. Now I wish I didn’t have such a huge imagination because I keep imagining what a son or daughter might’ve looked like.

I tend to focus my grief of being medically induced into menopause on not having anyone to look like me because I grew up just knowing my mother’s side of the family. Thanks to divorce when I was two, I never met anyone on my father’s side until I was 35 years old.

I look nothing like my mother. I look nothing like her side of the family. I have struggled with that.

There is no one to carry on my name. It literally stops with me.

What is it like to actually carry a child? Thanks to cancer, I will never know.

by Megan-Claire Chase

How would you respond to the writing prompt, ‘Ovary Suppression’?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Summer 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

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

The Next Unspoken Ink Writing Workshop Is Now Forming!

young adult cancer creative writing group

Update: The next Writing Workshop is now full!  We’ll start on Monday, August 13th, meeting each Monday at 5 pm PT / 7 pm CT / 8 pm ET for 2 hours via video chat until Monday, October 8th (we’ll skip Labor Day).  Sign up below to join the 8-week Unspoken Ink: Young Adult Cancer Creative Writing Workshop!

Our online, Unspoken Ink: Creative Writing Workshop is designed to take you on a journey through your cancer diagnosis and into your survivorship with a small group of your young adult cancer survivor peers. Each 8-week Writing Workshop consists of a weekly writing night attended via online video chat. We will get to know one another in an intimate, 18 person setting and address issues that transport us from initial diagnosis into the new normal and survivorship.

Where: Online video chat. We’ll send you more information about joining after you register. Please have a microphone headset and a webcam.

Who: Young adult cancer survivors and caregivers.

When: The writing group meets for 2 hours each week, for 8 weeks. A commitment to attend each week is important to group continuity and in creating a safe space. Please be on time 🙂

How does it work:

  • This workshop uses the Amherst Writing and Artists (AWA) Method.  The facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Though sharing is optional, hearing your own story and hearing someone else’s, teaches us about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what did we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.
  • Sometimes the prompts are about cancer, sometimes indirectly related to cancer, and sometimes not about cancer at all. Above all, the writing program emphasizes that we are more than a diagnosis.
  • Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

The Last Seven Days

poem the moment

Late in the spring, we shared a piece by Carol Anne responding to this same prompt…  Now read another submission by a writer in the Unspoken Ink summer session…

The nights had felt endless and so had the days.  The longest 8-minute phone call 18 months before was culminating in the longest, last 7 days.

Seven days of middle of the night meds.

Seven days of a constant stream of visitors.

Seven days of catch up phone calls.

Seven days of a beautiful, snowy world.

Seven days of ignoring the inevitable.

Seven days of silence.

Pills became syringes of liquids and creams.  People became so far away, emotional expanses opening up the already pronounced physical distances between us.  The world continued on outside in a ruthless veil of normalcy.  Nods and blinks turned into silence.

The topic we’d ignored crashed through the house.  It sloshed at our ankles and slowly rose up our legs, torsos, up to our noses.

I wanted to shout.  Hit the rewind button.  Ask all the questions I never knew I had and make space for the ones I hadn’t yet formed.

But then, all of a sudden, the seven days were over.

You were gone.

How would you respond to the writing prompt, ‘a moment’? “Everybody has a moment when you know nothing is going to be the same ever again, when one part of your life ends and another begins.  This is when you know that the changes, for better or worse are going to be coming hard and fast.  You’re on a roller coaster and all you can do is hope that your safety belt stays fastened and that you’ll come out in one piece.  These moments are what make us who we are, and I know I wouldn’t be quite me without mine.” 

—

This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants are meeting for 2 hours each week, for 8 weeks during our Summer 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

The Little Things

poem the moment

The little things are often bigger than we give them credit for. There’s triumph in getting out of bed and staying out of it all day. There’s dignity and strength in showing up to treatment each day. Taking a shower and getting dressed, making dinner, eating dinner. Each moment is a celebration, each day is a new triumph of existence and life. Some days my only accomplishment is feeding the cats. Some days it’s staying sane in the face of grief and the terror I feel waiting for the results of my next scans. Is it radiation necrosis? Is my brain being eaten by the radiation that killed off Larry (my tumor)? Has my cancer come back a third time? Breathing through each day and surviving daily life is cause for celebration. It’s the (big) little things that give meaning and hope to each day.

by Carol Anne Pagliotti

You can read more of Carol Anne’s writing at SoapBoxVille.

How would you respond to the writing prompt, ‘a moment’? “Everybody has a moment when you know nothing is going to be the same ever again, when one part of your life ends and another begins.  This is when you know that the changes, for better or worse are going to be coming hard and fast.  You’re on a roller coaster and all you can do is hope that your safety belt stays fastened and that you’ll come out in one piece.  These moments are what make us who we are, and I know I wouldn’t be quite me without mine.” 

—

This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants are meeting for 2 hours each week, for 8 weeks during our Summer 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

Summer Session of the Unspoken Ink Creative Writing Workshop!

online writing workshop

Our online, Unspoken Ink: Creative Writing Workshop is designed to take you on a journey through your cancer diagnosis and into your survivorship with a small group of your young adult cancer survivor peers. Each 8-week Writing Workshop consists of a weekly writing night attended via online video chat. We will get to know one another in an intimate, 18 person setting and address issues that transport us from initial diagnosis into the new normal and survivorship.

Update: The Summer Session is now full.  Please fill out the interest form below to be notified when registration opens for our next session!

Where: Online video chat. We’ll send you more information about joining after you register. Please have a microphone headset and a webcam.

Who: Young adult cancer survivors and caregivers.

When: The writing group meets for 2 hours each week, for a period of 8 weeks. A commitment to attend each week is important to group continuity and in creating a safe space. Please be on time.

How does it work:

  • This workshop uses the Amherst Writing and Artists (AWA) Method.  The facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Though sharing is optional, hearing your own story and hearing someone else’s teaches us about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what did we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.
  • Sometimes the prompts are about cancer, sometimes indirectly related to cancer, and sometimes not about cancer at all. Above all, the writing program emphasizes that we are more than a diagnosis.
  • Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

 

Silence Of Life

unspoken ink writing group

I miss the simplicity of just being. The hustle and bustle of this thing we call life is utterly stressful and noisy. All the distractions are blinking like neon lights. What’s amazing is when you pause and embrace the silence.

I never thought I could meditate, let alone make it a daily habit. Now I must have 15-20 minutes of pure silence a day, whether thru a guided meditation, music or just sitting. Once I understood that meditating and mindfulness does not mean totally clearing the mind, but it’s letting the thoughts come, release them and coming back to center. I truly see the value in it.

As a talker who used to work in radio and TV, noise used to fill the silence.

Now I see it’s the time in silence that is filling my soul.

by Megan-Claire Chase

You can read more of Megs writing at Life on the Cancer Train.

How would you respond to the writing prompt, From an animal’s point of view?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Winter 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

Infertility

infertility after young adult cancer

I saw the cutest little boy at Target, maybe he was two or something, wearing the most darling sweater vest and bowtie. I couldn’t stop looking at him. Before I knew it, I was crying; just silent tears rolling down my cheeks. It was a punch in the gut because cancer took away my option to have my own child.

Yes, I know there are many children who need a home and could foster or adopt. I actually want to smack people when they make that insensitive comment. Why can’t they see how much it hurts me to know I’ll never have someone who favors me or inherits my talent?

What is my legacy?

I somehow ended up in the children’s section while at Target. I couldn’t stop the torture. Every tutu, dress, bowtie and little shoes caused a tear and my breath to catch in my throat.

It’s funny that I think about children at least once a day. I had convinced myself pre-cancer that I would never have any and didn’t want any. They are too expensive. What if they are premature like I was and filled with health problems? Plus, I’m single, so end of story.

Yet, when my oncologist and gynecologist said it’s best to have a hysterectomy and bilateral salpingo oophorectomy to lower my chances of a breast cancer recurrence since my body suffered such horrible sided effects from all the post treatment for pre-menopausal women, my heart stopped. The final step was to medically induce me into menopause many, many years early and hope my body will respond well to the post treatment for menopausal women. Plus, the surgery would completely prevent me getting cervical, ovarian, uterine cancer and endometriosis. Sigh.

I collapsed into tears. Do I want to live or die? Thanks to cancer, my insides are already dead.

by Megan-Claire Chase

How would you respond to the writing prompt, Reproductive Endocrinology & Infertility?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Winter 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.