Flashback #8: Letting Go Of Hope

hope and childhood cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #8: Letting Go Of Hope, written by Dana. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.

“We are hoping for the best.”

“We hope that the chemo works.”

“We are holding out hope for a miracle.”

“Don’t lose hope!”

It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere….…

……

Read the rest of the article here!

Flashback #28: Today I Think Of Her

young adult carer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #28: Today I Think Of Her was written by Mallory. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

…There are two days every year when I write about my mother, on her birthday and wedding anniversary, and on the day that she died.  So many things have happened since she left.  I often think that I need to call her only to remember that I cannot do that right now.  Such is life after death.

Before my mother died, my family had very few conversations about her last wishes.  I ended up writing her obituary because I like to write and it felt like the thing to do.  We planned a memorial service instead of a funeral because that also seemed like what she might have wanted.  What about her belongings?  What about the who to invite and what we should say?…

……

Read the rest of the article here!

Shining The Light On Metastatic Breast Cancer

metastatic breast cancer

Refinery 29 is shining the light on metastatic breast cancer.  Using wonderfully beautiful photographs of women facing metastatic breast cancer.

“…Refinery29, in partnership with #Cancerland, has been bringing you these women’s stories, in an effort to change the conversation about breast cancer. We’ve talked about how only about 2% of the money raised for breast cancer research goes toward metastatic disease, and we followed stage-IV activists to D.C. as they lobbied congress to change that. But as October comes to an end, we want to turn to the daily, lived experiences of these women: What is it really like to live with a disease that everyone seems to have heard of, but no one really understands?”

The pictures show the scars and the faces and the souls behind the women, bringing life and awareness to this terrible disease.  The women talk about quality of life and the continual grieving that happens when life and its goals are irrevocably changed.

Are you a metastatic young adult cancer survivor interested in sharing your story?  Email info@lacunaloft.org.

image via

Jolene’s Story

young adult cancer survivor

This story is brought to us by Mary, friend to a young adult cancer survivor, Jolene.  This is Jolene’s story.

Sweet Seventeen and Diagnosed with Cancer
By
Jolene VonMillanich
May 6, 2011 at 7:37am

So, a lot of people have asked me to share my story about my fight with cancer. I decided to write it here so anyone and everyone can read it. Just to warn you, it is long, but here it goes.

When I was 17, I felt my first lump in my right breast. I ignored it for months until I finally went in for my annual exam and the nurse practitioner felt it. She immediately freaked out and referred me to a surgeon who ordered an ultrasound. I was like . . . “What is this bitch getting me into? I’m TOO young for this to be cancer!”

I went and got the ultrasound and we found out that it was solid and not a cyst like everyone thought. After that, I went to the surgeon and he gave me the option to either have a biopsy or get it removed. I decided to get it removed. So in July of 2003, I had my first lumpectomy. A few weeks went by and I didn’t hear anything about my results so we figured that no news was good news. I started college to become a medical assistant and after my first day of school, I came home to find my surgeon sitting on my couch with my family! OMG, talk about house calls! He explained to me that my results took so long to come back because they had to send the pathology to Stanford since no one at the local hospital knew what it was. He then told me my diagnosis was a Cystosarcoma Phyllodes tumor. He said that before me, he had never even heard of it. It was borderline malignant and he didn’t get clean margins. His understanding from what he read about it was that it would be best to do a single mastectomy followed by radiation, then reconstruction.

Being a 17 year old girl, my boobs were my best friends! I couldn’t imagine walking around with only one boob. What an idiot! If only I knew back then what I know now!! The surgeon decided to send me to a specialist at the UC Davis Cancer Center who had seen Cystosarcoma Phyllodes before. The specialist advised that a mastectomy wasn’t needed and we’d take the wait and see approach.

In October of 2003, I had my second lumpectomy to get clear margins and remove the second borderline malignant Cystosarcoma Phyllodes tumor from the right breast. After that, we did follow up visits every 3 months for a while. Eventually, it went to every 6 months and I was clear for about a year and a half. In February of 2005, when I was 19, I had my third lumpectomy for another borderline Cystosarcoma Phyllodes tumor. My doctor still didn’t pursue the mastectomy because he felt that it wasn’t going to turn malignant and wanted to preserve my breasts due to my young age.

June of 2008 rolled around and my doctor retired and my insurance changed, so I had to find a different Surgical Oncologist. Of course, I slacked on that until I felt a lump in my left breast in October of 2008. I found a really great surgeon and he did a lumpectomy that December. Immediately after that lumpectomy, I started to feel a lump in my right breast. It was pretty big by the time I got into to see my surgeon and at that time we decided that I was done getting lumpectomies every few years and it was time to do the double mastectomy. My new surgeon couldn’t get me scheduled until February of 2009 for the double mastectomy. By that time, my tumor was 11CM; the size of a softball. I had grown out of my B-Cup bra and even out of a C-The pathology report from my mastectomy showed that the tumor in my right breast was, in fact, now a malignant Cystosarcoma Phyllodes tumor. My left breast had more Cystosarcoma Phyllodes tumors and DCIS.

This is where the fun began! A PET scan was ordered and revealed hot spots in my right lung, right shoulder, a lymph node in my right armpit, and a lymph node in my right groin. My oncologist ordered a bone biopsy in my right shoulder because that was the easiest one to biopsy. That came back as a rare benign lesion. Then we decided to biopsy the lymph node in my right groin. Unfortunately, they didn’t get a good enough sample. The biopsy was inconclusive. My oncologist decided that since the bone biopsy was negative for cancer, the other spots weren’t cancer, either. What a mistake. I went back to work and went on with my normal life. About 4 months later, I had a repeat PET scan. It showed the spots were getting bigger. The lymph node biopsy was repeated, and what do you know, it came back positive for Cystosarcoma Phyllodes. My oncologist diagnosed me as Stage IV and referred me to a Sarcoma specialist at UCSF because he had never seen this kind of cancer.

I started chemo in October of 2009. I did Doxorubucin (aka Adriamycin, the Red Devil) and Ifosamide and had to be admitted to the hospital at UCSF for 6 days for each treatment. I completed 3 rounds of this protocol and had another PET scan. It showed that the cancer was unresponsive. So, in February of 2010, I started Taxotere combined with another chemo that I can’t remember the name of right now. LOL! After 3 rounds of that protocol, I had a PET scan and it revealed it was working!! Yay!! My oncologist and I decided to do 3 more rounds. After completing the first round of this three, I noticed the right side of my lips were really, really numb. My local oncologist ordered a CT of my brain which came back normal.

About 3 weeks later, I noticed what I thought was an abscess in my mouth where I had 2 molars removed the year before. I went to the dentist and got x-rays done and they said it wasn’t an abscess but a cyst or a tumor and it was sitting on my nerve in my jaw which was causing the numbness in my lips. It started getting bigger and bigger and was really starting to get painful. I was, FINALLY, referred to an ENT oncologist at UCSF and he did a biopsy. The biopsy revealed a sarcoma. I, of course, assumed it was another Cystosarcoma Phyllodes. I would find out at a later date that I was wrong. On June 24, 2010, I had the right side of my jaw removed and reconstructed with my Fibula and a steel rod. I was in surgery for 15 hours and the ICU for 9 days, but I only remember 3 of them. LOL! All together I was in the hospital for 2 weeks. The tumor measured 7 cm and grew that big in only 7 weeks!!

In August, I learned that the tumor was a whole different kind of sarcoma. So I’ve had 3 different kinds of cancer and they’re planning on testing me for Li-Fraumeni Syndrome next month. It’s a genetic disorder that increases your chances of getting different kinds of cancers and, usually, affects kids and young adults. I started a clinical trial at UCSF the beginning of this month. It’s a mixture of Avastin, Taxol, and a brand new drug that doesn’t even have a name yet. I have to go to San Francisco every week for eight weeks. Then we’ll do another PET scan. I’m praying that this works!! Third time’s a charm, right?!? I can’t wait to just be done with this and get on with my life cancer free!!

Addendum: Jolene’s chondrosarcoma in her jaw recurred before the end of 2010. She was recently advised that the genetic testing for Li Fraumeni is positive and she underwent another grueling 18 hour surgery almost identical to the surgery she had last June. More of Jolene’s jaw was taken and rebuilt. A couple of months after her most recent jaw surgery, it was determined that Jolene had two chondrosarcoma tumors growing in her sinus cavity/brain. Jolene underwent surgery to debulk those tumors and relieve some of her pain. After that surgery, Jolene (with the support of her family) decided to enter hospice care and live a life of quality over quantity. Jolene is busy enjoying time with her family and friends.Jolene VonMillanich died twenty days before her twenty-sixth birthday on October 30, 2011.

Jolene VonMillanich died twenty days before her twenty-sixth birthday on October 30, 2011.

Survivor Guilt

survivor guilt

A great piece about survivor guilt was recently written by an acquaintance of mine, Rachel, for the Cancer Knowledge Network.  I saw her speak at a conference in St. Louis and then was fortunate to meet her in person a few years later at CancerCon.  She is a somewhat shy and soft spoken person, with a heart of gold.  Being a young adult cancer survivor who has gone through cancer since she was a teenager, Rachel has seen friends come and go in her life.  Many of us can connect deeply with the complicated feelings of loss when a young adult cancer friend dies.  We start to question why we remain while our friend has gone.  Rachel, in her wisdom, has a powerful outlook on survivor guilt.

“I keep persevering and surviving because that is what they would want.”

Read the full article here.

The Grim Reaper

grim reaper

She died. While I was on vacation, and not thinking about it, she died. I sent her a card, but I took eons to get it in the mail. I’m not sure she received it in time. Who will open the card? With the octopus, inside, promising a hug with all 8 arms. Who will sift through her things and decide whether the card is kept or tossed?

She died. I had kept such good tabs on her over the last several weeks, even installing messenger app to be able to more easily communicate with her. We texted a few times each day. When she said that things were getting bad, I started sending messages where I insisted she needn’t message back unless she wanted to. I told her that she could let me know if there was anything she needed, anything she wanted to talk about.

She died. I am living. Her cancer came back. Mine has stayed at bay. It whispers warnings on the wind, crashing the waves against the shore and rocking the boats as they travel on their way, but still it stays away. What did my cancer have that hers did not? What luck was I doled that she did not receive? What clemency did I earn in this life or another? I do not sit on these musings, I do not feel them rooted in my soul, I do not stew…but I breathe the thoughts in and out. I feel their depth and their impact. I acknowledge their power and shift them aside.

She died. She did not pass, she did not lose, she did not battle. I hope she knew that she could talk to me. That I would have listened to her think about death and dying, that I would have sat with her as she analyzed the movement from living to dying to death. I hope, that in some small way, I helped. I hope that she was surrounded by those who made her not afraid. I hope, I hope, I hope.

She died. And what does it all mean? The idea of her living on inside of me, that I am better because I knew her, even in the small fraction that I did. What does that mean? What do I do with that piece when I cannot give it back to her? When I cannot make her whole again? When I want to give it back and make her whole?

She died. Can she think, can she see, can she sense, can she breathe, can she feel the universe in a way unimaginable? I hope so. I hope, I hope, I hope.

How would you respond to the writing prompt, of a photo of the grim reaper?

—

This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants meet for 2 hours each week, for 10 weeks during our Fall 2016 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.

A Friend Of Mine Is Dying

a friend of mine is dying

A friend of mine is dying.  I can’t remember if we’ve ever spoken on the phone.  I know, with certainty,  that we have never met in person.  Still, I will call her my friend.

I met her on this young adult cancer journey of mine, just as I was beginning to grapple with everything that cancer had taken in its tight little grasp.  We stayed in very loose contact, mostly over social media; liking photos and wishing birthday thanks as time went by.

Then her cancer came back and it came back with a vengeance.  She sought alternative treatments and then resorted to chemotherapy.  Before losing her beloved hair, she married her sweetheart.  Just the other day, she made it to her 6 month wedding anniversary.

She wasn’t supposed to live that long.

I think of her every day.  I think about what I could say to her that might help while still being fully aware that I don’t actually know her that well.  I have never met her, never really carried on a conversation with her that didn’t revolve around cancer, yet I feel so connected to her.  I think about what she must be thinking.  I wonder if she is mad or sad.  I want to ask her about death.  I want to tell her that she can confide in me, that she can have the hard conversations with me if she wants, while also knowing that it is probably not with me that she wants to go through those transition-like talks.

I know, deep inside, that I want to have these conversations for her, but also for me.  I want to hear what conclusions she has come to about death and dying, about heartache and loss, because the truths in her life right now frighten me.

I see in her what could so easily happen to me.

Unspoken Ink: Baby Joker

writing group

This is from last week’s Unspoken Ink Writing group; unedited.  The prompt that was given was the above photo and the words, “crazy game of poker.”

And he sits there with his baby face,

smile pasted on and frozen forever like a doll in a case

with his polka dot bonnet

and flaming cheeks holding a toy just out of reach…

Death.

I often picture him as an old man wagging a grey finger

slowly lifting it to his thin mouth

and dust falling from his hairline lip with a crumbling shhh

but then he’s gone, like the Ghost of Christmas Past

the beeping machines snap into focus

and suddenly he appears again

now a toddler holding candy

The King and Queen know nothing, because the Joker

has everything in his hands

a screaming baby Death, screaming into the past present and future

and screaming his baby laugh in your face as your life goes to shit-

I think it’s wildly unfair;

to warp the tender charm of a fresh baby’s cheeks

But his eyes tell the whole thing- curved and dark

like a black hole peeping through two crescents

his little baby feet in little baby shoes

but those eyes

don’t be fooled by his games

or the toadstools at his feet

or the candy in his fists

I’ve grown to know you, the forms you take

and the many more that will follow:

a young man getting hit in the sidewalk by a mother of two running a red light

he’s in “I don’t love you anymore”

“I never loved you”

and sometimes in your own voice:

“I could never love you”

In Remembrance Of Max Mallory

young adult testicular cancer

This post was written by our contributor Max Mallory’s father, Chuck Mallory. Chuck, thank you for sharing another piece of Max’s story with us.

Max was a newer member of Lacuna Loft and was in the process of writing for the site when he passed away on May 20, 2016, at age 22.

He had been diagnosed in Oct. 2015 with Stage 3C testicular cancer and fought bravely, doing well through two major surgeries (RPLND and brain surgery) and regular chemo. But during high-dose chemo, his brain tumors returned and caused a massive brain hemorrhage.

I hesitated to write this tribute for two reasons:

1. There is enough fear for a young adult with cancer and I don’t want to generate more fear.
2. “Survivor’s Guilt” is real, and I don’t want anyone else to feel it.

Max’s mother, brother, and I want all those who are fighting cancer to survive–especially the readers here, who have their whole life ahead of them and need all the hope possible.

Max had even planned, after recovery, to go into young adult cancer awareness. We have established a foundation in his name, the Max Mallory Foundation, to continue his efforts. An overlooked area of awareness that we will work on is related to pediatrics. Max wasn’t one who discovered a lump and ignored it. When he seemed born with one testicle, we had surgery at age 6 months and were told that the other testicle was never there–he was born with only one. We found out after diagnosis that he had an undescended testicle all along. I have since found three other young men in their 20s with the same story. They had the same surgery, were told it never was there, but it was–and an undescended testicle is a breeding ground for cancer. And doctors are still missing it.

To all of you fighting the battle: know that surely Max is with you in your fighting spirit, looking down from above, his positive, upbeat spirit shining on you, wishing you health, happiness and a long life. That is what all of us want for you. Max made a document like a will three days after he was diagnosed, Oct. 25, 2015. He said in that note: “No matter what happens, never give up.” He didn’t, and neither should you.

The Max Mallory Foundation has been set up to provide testicular cancer awareness especially in cases of pediatric testicular torsion, a preventive form of testicular cancer. To donate please go here.

Max-Mallory-remembrance-post