hoechemo

[hoechemo]

When Bret gathered with friends and family, no amount of time was ever enough. He was always up for one more story, one more laugh, one more song. In honor of Bret’s birthday, let’s keep the stories alive, the laughs hardy, and the music loud!

Join us for One More Song!

Saturday, April 6th, 1-4 pm

Blue Island Beer Company 

🎶 Record Swap 🎙Great Music 🎨 Kids Activities 🌭 Delicious Food 🍻Craft Beer & Sodas 🎟 Raffles

Entry is free and all are welcome! We’ll be selling food, drink, and raffle tickets. All proceeds will benefit Hearts to Art, a very special summer camp for kids who have experienced the death of a parent. L

Learn more about Hearts to Art: auditoriumtheatre.org/education/hearts-to-art-summer-camp/

Spread the word and let's keep the memories alive with One More Song!

If you can not attend but would like to donate to Hearts to Art in Bret's honor, please click here.

[hoechemo]

The Worst Anniversary

It’s been three years since you died. 

Three years since you came home from the hospital and died. I thought, maybe, we would have a day or two with you but within thirty minutes of being home, you were gone. Your chaotic, unmedicated, agonizing death still rocks me to my core, your last moments alive living deep in my bones. My muscles remember. Every cell in my body can recall the enormity of your last breaths.

Every year, no matter what I do to ease the pain, January 6th approaches like a howling freight train barreling straight toward me.

This day looms large at the end of what I’ve come to know as the heavy season, the season of holidays, anniversaries, little light, and the instinct to hide away from the long Chicago winter. Our wedding anniversary kicks this season off and this year, on that day in early December, I cried so much it scared me. Then Christmas came and went. I noticed this year felt less like survival and more like I was here, present. My new partner Glenn does a great job of keeping the magic of the holidays alive. And it’s working. Evie, too, is so full of wonder. Don’t worry, she’s suspicious of the season, too, just like you, but still so excitable. She’s still got your zest and that little twinkle in her blue eyes.

But after the magic of Christmas morning wore off, my body kept bracing itself for January 6th. In those blurry days I lost track of dates, times, appointments, calories. I barely exercised. If someone poured a drink a little too early in the day, I’d accept it. I put a bra on later and later. I didn’t know if it was depression or just the time between Christmas and the new year when no one goes to work and everything just turns over as slow as molasses. But then I realized, it’s probably just grief. My grief. The way it shows up and tags along still.

One of those nights I decided to write. I sat in my bed just a few feet away from where you died. It wasn’t our room then, but it’s my room now. I sat in the bed that Glenn and I now share. Hodge curled up at my feet just like he was curled at your feet that horrible day. In these last three years I painted the room a deep, grounding blue called De Nimes, I hung new curtains, and I swapped the light fixture, all to make this room feel different. I wanted it to feel livable. I wanted to erase the scars it holds. But when I glanced over to the corner that now hosts an armchair full of clothes the memory swells up in my body and I’m swept away. I could feel my whole body on your temporary metal bed, crouched over you. I could smell the oxygen mask I was holding up to your mouth, the one attached to the machine that the hospice nurse didn’t know how to use. I could hear the clanking of the empty oxygen tanks. And the full ones that they didn’t have an adapter to.

I can hear their muffled murmuring trying to figure it out as you slowly slipped away from us. I can feel my hot tears spilling out all over the place and I can feel the words coming up out of my throat, half hugging, half gripping you, in a desperate attempt to console, dignify, affirm, and love you. I can feel myself split in two, trying to be your advocate and your chaplin all at once. I can see the look in your eyes, pleading and desperate at first, then distant, as the last bits of oxygen leave your body, and your life leaves those perfectly blue eyes.

Instead of being in that room on January 6th, I’ve learned to leave it. Last year I took off to Berlin, got a tattoo, and unexpectedly met Glenn. This year we drove south, then a little bit west, to hide out in the foothills of the Blue Ridge Mountains. A little house with a wood burning stove perched way above everything where we could look out over layers of trees, a gradient of mountains, and pillowy clouds. We went to yoga, soaked in a hot spring tub, rode horses on the hillside with Evie smiling from ear to ear, guiding her Candy with such care and confidence. We let ourselves get lost somewhere between Asheville and Hot Springs, between New Year’s Eve and the day you died.

And today, instead of being in that room where your breath was stolen right in front of me, we’ll be taking you on a hike, spreading a few of your ashes, and trying to find our own breath as we keep learning to carry on without you.

My greatest wish is that you have found peace faster than I have. It’s been three years, Bret, and I’m still searching. 🤍

#widow #grief

[hoechemo]

Cancer Survivors' Garden

On Bret's 42nd Birthday

I will keep coming here, looking for you, until I figure out what else to do.

These steps where we sat on our first date. That grassy knoll where you asked me if our love would be forever. This place where we’ve gathered time and time again to honor both your strength and your suffering.

I will keep coming here and be greeted by this wrought iron frame embracing me as I exhale all that I’ve been holding.

I will keep coming here with my tissue and my pen and wait for the words to find me, since I can never seem to find them.

I’ll keep coming here to this place where determination and loss and love and hope all mash up together in one bitter word - cancer. The energy of this place is like an untouched bomb covered in a blanket of peace. Or perhaps more like the aftermath of a bomb, where that single weed grows up through a crack in the rubble and we all celebrate resiliency. But those that keep coming here to cry on these steps know what was lost for that weed to grow. Those that keep coming here have every right to tell that weed and its resiliency to fuck off and that we’d rather pay our respects to the destruction.

I’ll keep coming here and watch as the city swirls all around. Cars curving along Lake Shore Drive. Sirens and bus horns blaring off in the distance. Dog walkers strolling through, happy to know of this little corner of respite. I’ll come here and notice not a single person in view is burdened by your death. Not a single one knows that today you would turn 42. That our daughter, who is now 5, made cupcakes and a birthday card for you, and wore the shirt you gave her, the one with the elephant shooting a rainbow out of its trunk, to school today to keep you close. Not a single person here knows the magnitude of our loss.

But I will keep coming here, and finding you, on these cold concrete steps, in the sunlight ricocheting off of these skyscrapers, and in every memory that this park holds. Eventually, I’ll be able to open my mouth and speak to you again, going on and on like our first date. But for now I’ll just keep choking on my thoughts, my throat restricting each sound, performing some sort of word osmosis until they come out as heavy tears. A tear or two for longing, a few for regrets, and a whole puddle for love.

So when I don’t know what else to do, Bret, I will keep coming here. I will pause and remember your life. I will honor your suffering and what you lost along the way. Without sugar coating I will honor your tenacity and marvel at the way you hung on for so long. I guess I’ll keep coming here because this is where I feel the most connected to you. On these days that feel unbearable to face without you, I’ll come here and I’ll find you.

#cancer #hodgkin's #lymphoma #grief #griefandloss #youngwidowsclub #gvhd #stem cell transplant

[hoechemo]

The Firsts of May

The Firsts of May - Weighted Celebrations

Written by Aura Brickler, Bret’s Widow and Blog Beneficiary

Evie and I, taking it all in.

These months following Bret’s death have been filled with every emotion the spectrum has to offer, colored by every single hue. The seasons have changed, a pink moon ushered in the possibility of new beginnings, snow-covered daffodils have come and gone, and the pandemic subsided enough to hug a few friends. Time moves on.

As we knew they would, the firsts have started, and many more linger, ominous on the horizon. They come with moments of sharp, deep pain softened sometimes by Evie’s infectious giggle, or finding a stunning photo of Bret, full of hope, when life was lighter. When I sit down to write about these moments words simply evaporate. The landscape of emotions is too vast and the speed of life too fast. I’m left wide-eyed and perplexed trying to hold back time just long enough to catch my breath. But, even when it feels like I have adjective dementia, I push myself anyway, because if I don’t try, I feel like I’ll lose my grip on all of the ways that Bret is staggeringly missed. Grief is rarely rational.

Evie and I greeting the Pacific Coast.

Our family traveled to Southern California last weekend to celebrate my brother Aris’s college graduation. Our first family trip without Bret. There was no graduation ceremony, but we gathered on the coast because after a year of such loss, distance, and sacrifice this milestone seemed worthy of in-person celebration. I was sixteen years old when he was born, my sister was seventeen. In a few blinks of the eye Aris has grown into a thoughtful and brilliant young man. Because my sister and I are so much older, we don’t have a typical sibling relationship with Aris; we’re more like nagging mother hens who occasionally give unwanted advice or take jabs at the generational differences. Because he is much younger, he has easily taken on the role of Evie’s favorite uncle, and he’s stepping into it knowing he can help fill some of the space that Bret’s absence leaves for her. After a FaceTime call in February, he described this as an honor, not a burden, when I unceremoniously acknowledged his promotion. When I see the pride he takes in being Evie’s uncle my anxious heart softens. With the love that surrounds her, she will be fine.

Evie and her Uncle Aris.

Aris has been dating someone for the better part of two years. This trip would be the first time our family meets her, and as I count chairs around the patio table to ensure everyone has a place, I realize not only is Bret not here, but someone else will soon be in his seat. Someone who never had the chance to meet him. I stood there, speechless for a moment, and just let a tear do the talking. There was no resentment toward this new occupant but rather an aversion to the way time keeps moving on, quickly, with no consideration for my need to take a pause. For my need to catch up, and find the right adjectives.

Later that night, as I put Evie to bed she asked, What shirt was daddy wearing when he died? A brief conversation followed, which included questions like Why did he even go to the hospital? and Why couldn’t the doctors fix his lungs? 

Waking up on Mother’s Day, reflecting on Evie’s questions, her matter-of-fact processing of Bret’s death, and how I’m doing as her underqualified grief guide, brought a palpable sadness to the day. After the coffee was made and before the rest of the family woke up, my mom and I shared this sadness on the patio. Often, when talking about the ways Bret is missed, smiles and laughter follow, as we remember specific moments or personality bits that made him so lovable. This moment of shared grief was interrupted by Evie begging us to jump on the trampoline with her. I pictured Bret, tethered to his oxygen tank for two years, always pushing through. We wiped the tears and we played, Evie’s laugh bouncing all over the rented back yard.

Evie's general disposition; in motion and happy.

Some time later, Bret’s mom and I cried our way through text messages trying to imagine how badly this day hurts for the other one. The pain of losing a child seems unbearable in comparison to my own loss. I try to be in that space with her knowing that I can’t possibly understand the depth of it. After several other kind, loving messages showed up I was ready to admit that this Mother’s Day would be harder than I thought. My anxiety was growing, the knots in my stomach were tightening, and the weight on my chest was bearing down. I needed to retreat. Once the others woke up, I set out for the beach. 

As I moved past the crowds, hiding fast-flowing tears behind my sunglasses, all I could see were happy families, dads playing, moms sunbathing. This of course was a delusion, but again, grief is not rational. I just walked and cried and looked to the clouds for Bret’s assurance. He had such a way of letting me know that everything would be okay. It was a gift I never knew the value of, or at least one that I took for granted. If I squint my eyes just so, his soft smile comes into view, and when I close them to blink away the last few tears of the day, I can imagine his arms wrapped around me and my head resting on his chest. I finally take a breath. A deep, full breath.

Finding solace at Moonlight Beach.

Many days later my heart is still heavy for those whose Mother's Day was spent grieving in between the celebrations. To those who have lost their mothers, mothers who have lost a child, mothers who are doing it all on their own, those who can’t have a family in the way they had hoped, and to those whose mothers don’t see them for the treasures that they are, I'm walking along side you. 

My heart is simultaneously joyful for the women of Evie’s life: her Yia-Yia, her Grams, her Aunt Aushie (who has been her steadfast caregiver and whose bond is unbreakable), and my amazing friends who have opened their hearts for us and love Evie like their own. With a heart speckled by bits of grief, gratitude, and everything in between, Happy (belated) Mother's Day.

Evie and her beloved Aushie, navigating LAX. Evie's "Daddy Bear", made from Bret's most worn dress shirts, is along for the ride.

Evie basking in the love of her Grams, Bev Hoekema, and Yia-Yia, Ellie Lemberis.

Evie and Yia-Yia playing tag with the waves.

#griefandloss #lifeaftercancer #mothersday #parentingthroughgrief #youngadultcancer #youngwidowsclub #moonlightbeach

[hoechemo]

A New Beginning

A New Beginning - Dedicated to Caregivers 

Written by Aura Brickler in response to a journal prompt on April 13, 2020

My new beginning has yet to happen. 

I don’t know much about it, but I know it will come with a bang. I know it will hurt like hell even though I have braced myself for years. Some days it feels like I sit and wait for it, daydreaming about what it will feel like. It can show up like a slow motion video of a head on collision; as a family comes into focus I realize it is ours. Other times it looks like a storm way off in the distance; a disastrous cloud over an Idaho mountain range, while we’re being spared a few last rays of the sun's light. When it happens I will scream and cry and whisper to myself, “but you had so much time to prepare.” 

I will begin again in a suffocating state of mourning. I will smile at others and assure them that I am okay. I will agree that he’s better off not suffering, that he is no longer laboring to find each and every single breath. I will hope with all of my might that there is an afterlife, one that has offered him eternal peace after so much pain. I will begin again wanting more than ever to believe in the narrative of heaven because what else do you tell your young child about where her father goes when his body dies? I will likely tell her that he lives among the stars now, always hovering over her, and when the night sky is the darkest, she’ll see him the most. 

I will begin again as someone with a lot of regrets. The idea of living every day as if it is the last fades after 3206 days of trying hard to do so. Cancer has a way of digging in and dragging along. It grabs you by your weaknesses and makes you beg for an ounce of strength. It gnaws at the foundation of your collective hopes and dreams, allowing despair to fill in the cracks. I will begin again and learn how to forgive.

I will begin again as a narrator, telling stories to keep him close to us. Telling tall tales that protect our daughter from the parts of the story that are too painful. I imagine being left in a fog of uncertainty, fear, and confusion. When the fog begins to lift, I will begin again as grateful - for what we had and what, of him, I still have. I will begin each day like I do now, with a cup of coffee. I will begin again as a widow.

In loving memory of my husband, Bret Hoekema, who traded suffering for surrender on January 6th, 2021. He left us too soon but his presence carries on with such tenacity that he will never be just a memory. 

#isolationjournals #cancer #widow #grief and loss #miss you

[hoechemo]

[hoechemo]

This just in... Maybe you think its ridiculous; Maybe you’ll save the life of someone like me.

Wash your hands

#Wash Your Hands #Coronavirus #Covid19 #Lung GVHD #Immunocompromised #stem cell transplant #GvHD #Cronic GVHD #bronchiolitus obliterans #BOOP #Pneumonia

[hoechemo]

Against Most Odds — A Celebration of Survivorship.

For tickets click here! 

#CancerParty #Fundraiser #youngadultcancer #BMTinfonet #BeTheMatch #LifeFoundation #AgainstMostOdds #40thBirthday #HideoutInn #Stem Cell Transplant #Allogeneic #Autologous #GVHD #GraftvsHostDisease #Hoechemo #AYACSM HazelwoodMotel The Wabash Kid EdwardHaroldHazelwood #FuckCancer

[hoechemo]

“Out-of-pocket expenses related to treatment are akin to physical toxicity, in that costs can diminish quality of life.”

#Financial Toxicity #Cancer #Young Adult Cancer #Hodgkin's #Fuck Cancer #lymphoma #Stem Cell Transplant #Allogeneic #Hoechemo #Hoekema

[hoechemo]

Citizen of Dark Times

by Kim Stafford Agenda in a time of fear: Be not afraid. When things go wrong, do right. Set out by the half-light of the seeker. For the well-lit problem begins to heal.

Learn tropism toward the difficult. We have not arrived to explain, but to sing. Young idealism ripens into an ethical life. Prune back regret to let faith grow.

When you hit rock bottom, dig farther down. Grief is the seed of singing, shame the seed of song. Keep seeing what you are not saying. Plunder your reticence.

Songbird guards a twig, its only weapon a song.

Kim Stafford, “Citizen of Dark Times” from Wild Honey, Tough Salt. Copyright © 2019 by Kim Stafford. Used with the permission of The Permissions Company, LLC on behalf of Red Hen Press, www.redhen.org. (buy now)

Listen on GarrisonKeillor.com Subscribe to the Apple Podcast Enable on Alexa

#Citizen of Dark Times #Kim Stafford #Wild Honey Tough Salt #Cancer #Inspiration #Young Adult Cancer #Fuck Cancer #Hodgkin Lymphoma #Allogeneic Transplant #GVHD #Poetry #The Writer's Almanac #Stem Cell Transplant

[hoechemo]

Bret is Discharge

July began with me shitting out both ends to the soothing sounds of the South Side Of Chicago on our nation’s birthday, and it ended with a week in the hospital fighting off aspirated bacteria in my lungs (Pseudomonas). In between, I spent a week with a wonky sore throat and cough, and all of my family underneath one roof in Northern Michigan. It’s been a harrowing month, but I am discharge!

#life after cancer #young adult cancer #hodgkin's #lymphoma #cancer #hodgkin's lymphoma #stem cell transplant #hodgkin's disease #allogeneic #cancer survivorship #ayacsm #blood cancer #hoechemo #pseudomonas #BOOP #pneumonia #gvhd #graft versus host disease #Bret is discharge #discharge

[hoechemo]

And then the body says, “I dig your enthusiasm, I really do, but...”

#pulmonary rehab #graft versus host disease #hodgkin's lymphoma #young adult cancer #just breathe #oxygen #fuck cancer #i can’t breathe #lung gvhd

[hoechemo]

Alone Not Lonely

Today is the first day I’ve spent alone since February.

Self Portrait, May 2018 University of Chicago Medicine, CCD, 10th Floor

#AloneNotLonely #Lymphoma #Graft Versus Host Disease #Young Adult Cancer #FuckCancer

[hoechemo]

What Care Takes

by Aura Brickler

After twenty-seven days in the hospital, Bret is discharged to my care with nothing more than a portable oxygen tank. Discharge is supposedly based on progress. I’m still waiting for someone to show me anything tangible, perhaps a graph, proving that during inpatient rehabilitation his lungs have in fact grown stronger. I’m seeing something different.

But, here we go. At least Bret will see his daughter when he wakes in the morning. At least he will see the remaining magnolia blooms in our yard. When I drove Bret to the emergency room, we were in our winter coats. That night we were supposed to go to a concert of one of our favorite musicians. A date night Bret had planned so long ago. A date night we’ll now brush onto the growing pile of failed attempts to do that thing that married people need to do.

The panic hits me most when I lay Evie down for her nap. For now, Bret is settled on the back deck and tethered to a small blue oxygen tank by a fifty-foot cord. The machine is rhythmically sucking in and blowing out, like a slow and even breath for Bret to emulate. Oh yeah, breathe. The panic solidifies in the kitchen, then I look to the dining room, living room and entrance way. Within the 400 square feet of our first floor living space my eyes dart to a million things out of place, then they well up with tears of defeat. I have such limited time to fix everything that is wrong.

…

In the early morning hours of that first night in the emergency room, an awkward medical resident wakes us and casually makes a case for intubation. This would be the time for her to make eye contact and show concern. She seems to be asking me for permission, but this decision belongs to Bret. This decision also needs to involve the attending physician, not her spokesperson. When she does arrive, Bret manages with labored breath to ask a few questions through a BIPAP mask. The physician calmly explains why now, versus waiting and risking the complete failure of his lungs, is the safest approach. Exhausted and confused, Bret agrees. Within minutes his room fills up with new faces and machines. Bret and I quietly say our goodbyes, not knowing if it will be days, weeks, or forever; then I am ushered out.

That same morning, I call my therapist to let her know I won’t make it to my appointment because my husband is in the ICU. She knows before I do that I’ll be needing time off work, and not just the one week I was allowing myself. So, we fill out paperwork for a short-term disability leave — adjustment disorder with anxiety and depression. I describe to her symptoms I hear from my students too often at school. Symptoms, as a social worker, I commonly write into reports and individualized education programs. I am describing someone else.

As hospital days become hospital weeks, Bret’s progress lags, doctors scratch their heads, and nurses continually forget minor pieces of his medical history like the total hip replacement he had just a few weeks prior or that heart attack he had one time. I try so hard to smile and stay kind to people providing Bret’s care. I learned that when you challenge some people in the health care setting their insecurities skyrocket and a power struggle can ensue before you even finish the question. Now, I tiptoe around challenges with so much bullshit politeness. And it works — Bret gets better care. But I have bricks on my chest. I have exhaustion in my muscles. I’m cranky and irritable with those that I love. This patient on paper is definitely me.

…

I walk back into the kitchen because it seems most accomplishable. I dive in and three dishes later a song comes on that punches me in the gut. I lean over the sink and hold myself up because the pull to sit on the floor and quit is so strong. I think, just do one more dish. Just one more. I say this several times, and slowly the kitchen becomes a suitable place for Evie to have lunch when she wakes up. This trick is only useful for the 1st floor tasks. The tangible ones. The ones that people, if they walked in right now, could observe. The upstairs tasks, the bills piled up on the desk, those are in a realm of their own.

I can’t sleep in our room at night. The oxygen machine downstairs huffs and puffs in a room of its own, but Bret’s breath at night is so loud, so labored. His exhale shakes the bed and he moans intermittently.

I lay awake and debate whether I should wake him. I shake him and ask if he’s having a nightmare. I shake him and ask if he’s getting enough air. I shake him and ask if he’ll try his pulse oximeter, as there is no way this breathing is sufficient. He pleads with me to let him be. So, I retreat to the couch.

The second night of this, I wake to the sound of his breathing from the couch downstairs through the closed door of our bedroom. I hesitate for a moment, then hurry upstairs to check on him. His oxygen tube has fallen to the floor, and he is trying to go it alone without being awake enough to know what is going on. I search in the dark for it. We reattach it to his nose and tuck it behind his ears, and I gently demand he put the pulse oximeter on his finger. It reads 72%. This was his oxygen saturation when we arrived at the E.R. one month ago. This was his oxygen saturation hours before they intubated him and let the ventilator take over for three days. On the way to the E.R. this was the oxygen saturation that convinced me he must be having a stroke as he fell asleep and woke up over and over and over again making nonsensical comments until our arrival at the University of Chicago. This is terrifying to me. I fall asleep again around six a.m., feeling reassured that hours have now passed, and he hasn’t died.

I am supposed to return to work tomorrow, but I am a walking panic attack.

I’m told I should smoke weed. I’m told I should do yoga. Stretch. Breathe. Eat. Nap. Walk. I should call a friend — meet a friend for a drink. I should shower. I should definitely shower. Yep, a shower, then lunch, then one more dish.

... This essay was written by Aura at the end of May upon Bret’s return home from the hospital.

#Caretakers #hodgkin's lymphoma #young adult cancer #cancer families #blood cancer #stem cell transplant #allogeneic #autologous #radiation #gvhd #lung graft versus host disease #graft versus host disease #going home #breathing #oxygen #intubation #ventilator #cancer wives #lymphoma #leukemia #lls #fuck cancer #stupid cancer #ayacsm

[hoechemo]

Day 40 - Getting Serious!

Not much has changed in the two weeks I've been home. Tid bits of progress. I still have a very, very long road of healing to rollate my way down. In the meantime, here's another picture of how my daughter inspires me every day. This is us "getting serious."

Over the next few posts Aura and I hope to share with all of you the unpolished version of our 2018. We feel like we got caught up making sure everyone following along felt okay, rather than making sure you all know how incredibly difficult this has all really been for our family. Here's to a more honest portrait and some expedited healing already.

https://www.youcaring.com/brethoekemaandaurabrickler-1182163

#GVHD #Lung GVHD #Fatherhood #Hodgkin's Lymphoma #Young Adult Canceer #Blood Cancer #Cancer #AYACSM #Hoechemo #Pulmonary Disease #Scar Tissue #Oxygen #Supplemental Oxygen #Rollator #Father's Day #Father's With Cancer #Chemotherapy #ABVD #Radiation #Stem Cell Trasplant #Allogeneic #Autologous #Total Hip Replacement #Fuck Cancer

[hoechemo]

27 days later, I’m going Homechemo.

27 incredible days later, I’m going home! Please keep us in your thoughts as these transitions are extremely difficult on myself, Aura, our close family, and friends, even without oxygen (2–4 liters) or a wheelchair. We often feel as though we’re making it up as we go along, and we need strength to believe that this level of depleted well-being has not yet become a way of life for me. I am far from independent and we are tired, but we believe I can and will continue to improve.

Today I give thanks to each and every staff member of the University of Chicago and the Shirley Ryan Ability Lab who went out of their way to look me in the eye and care for me as an individual when the demands of the work barely leave time for that human touch. In the end, it’s the human touch that brings real healing to my broken heart. Your work of empathy and compassion is immeasurably important. 

I have so many more thank you’s to share… in time. For today…pursed lip breathing is my everything.

Here we come Evie and Hodge! We’re doing phase three as a family…

My Love and my Rock

My Physical Therapist

My Occupational Therapist

My Nurse

My Gangleaders

My Lunch

Just memories...

To help with childcare and recovery: https://www.youcaring.com/brethoekemaandaurabrickler-1182163

#Just Breathe #Home #Young Adult Cancer #Hodgkin's Lymphoma #Blood Cancer #Stem Cell Transplant #Leukemia #Allogeneic #Autologous #AYACSM #Fuck Cancer #Hoechemo #Bret Hoekema #stupidcancer #caregivers #oxygen #wheelchairlife #occupational therapy #physical therapy #physiotherapy #hip replacement #Total Hip Replacement #Infection #GVHD #Lung GHVD #You Should've Seen The Other Guy #Nathaniel Rateliff #Pearl Jam #Willie Nelson

[hoechemo]

Day 24 – Go On, Tell Me What’s Good.

Alright, everyone, big week ahead. I miss my family. I miss my home. I miss my little corner of the world. I know that I have progress to make before I go home. I want to crowdsource some courage for the week. I need your stories, your unexpected victories, your long-sought accomplishments, your near misses that turned into triumphs, the changes you’ve made not because you had to but because you wanted to make your life better. I want to hear about your small, good thing. I want to hear about you letting something or someone go. I want to hear about you letting someone in. I want to hear about how you kept it steady through troubled waters. I’m ready to hear about you breaking the rules for all the right reasons.

You know what I mean? Help me lung up. Let’s share some victories. Tell me what’s good.

For instance, this is me in dance class last Friday. I don’t like to sign up for things, but I signed up for dance. I wasn’t that excited about dance. I was worried it would make me feel worse. Instead, dance class was the first time in three weeks that my body moved freely. I was free to flail. And I flailed hard. Not as hard as Gail flailed, but Gail had earned a good flail. Gail got the word that she was going home on Saturday, and now she was strutting and swaying and shaking her hips all over that laboratory floor. I know for certain she couldn’t feel her harness or her P.T. holding her up by the underwear and the sweats. She was free again. You inspire me Gwen. And that’s a story worth sharing.

When I’m on the track in the lab this week making right turns, I will think about all of you out there, as I seek a peace that passes my understanding, a confidence commensurate with the known and the unknown that lies before me, and a knowledge deep in my heart that all of me is ready and able to come home and be with you again.

Extra huge bonus points for victories that are actually about you. Not your beautiful child or your adorable dog. Let’s talk about you.

Go on, tell me what’s good. Then breathe deep and repeat. I promise I will too.

#justbreathe #courage #young adult cancer #hodgkin's lymphoma #stem cell transplant #autologous #allogeneic #lung gvhd #Bronchiolutus Obliterans #Lungs #Oxygen #fuck cancer #family #fatherhood #hospitals #rehab #physical therapy #occupational therapy #chicago #hoechemo #group therapy #community #self care #taking pause #breath #breathe #oxygen tank