When I Tried to Save My Hair With Dry Ice and a Pantyliner

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I stared at the screen, numb, while my husband tried to explain again the surreal website he found.

“You put these ice caps on your head during chemo,” Gary said, “and then you won’t lose your hair.”

I scrolled down and saw women who still had their hair after chemotherapy. 

“Look at this one,” Gary guided the curser to a beauty with silky black hair.

But I was still reeling from my diagnosis and couldn’t get my head around going bald — or of freezing my head — or of having cancer. I was perfectly healthy. A bit of a health zealot, in fact.

“How does it work?”

“Well, we’d have to rent these caps, these blue ones, see?” He pointed to a gel pack shaped like a helmet.

“We’d freeze them with dry ice, and we’d put them on your head on chemo days. Look,” he said again, his finger on the screen, “they have velcro straps to keep them on tight. Chemo meds wouldn’t be able to circulate on your scalp, because your scalp would be frozen. And then you wouldn’t lose your hair.”

It seemed like we just found the almond in my breast — the almond that grew to a walnut in a couple week’s time. Now I was talking about freezing my head.

“It sounds miserable. Does it work?” I asked.

“Might be worth a try,” he said.

I asked him how much it costs.

“Well, it’s a little pricey. They rent the caps for $900 a month. Let’s see, you’ll be in chemo for five months. Look, don’t worry about it, we can afford it.”

I thought, good God. Who spends that kind of money on hair?

“I can get a wig and I’ll be fine. Maybe I’ll use the bee hive your mom has in her closet.” A dusty hat box at my mother-in-law’s held a weird styrofoam head with a pile of hair untouched since 1962.

“You should do it,” Gary said over my shoulder. “Keeping your hair is going to make you feel less sick.”

I kept reading. The caps couldn’t be allowed to warm up or they wouldn’t work. They have to be stored in a commercial freezer before chemo begins and then layered with dry ice in a cooler. Plus we would need a laser thermometer, insulated gloves and a gas mask. None of these supplies were even available in my rural community. The whole idea was beginning to look logistically impossible.

Was it worth it? What kind of lesson am I teaching our daughter? Should Lauren watch me fight for my hair or lose it with dignity?

“Your recovery will go faster if you don’t lose your hair.” Gary had his credit card in hand.  “Let’s try it.”

“I suppose it’s worth a shot,” I said in agreement.

Gary ordered supplies. Since I hate math anyway, I didn’t add up the total and told myself we could afford it.

“Get this!” Gary said, reading a blog. “You’re supposed to cram pantyliners under the cap at your hairline to prevent frostbite. Can you believe that? Pantyliners?”

“Medical innovation meets 1950.” What was I was doing?

The next step was to find dry ice, a project in itself in my town of 900 people.

“I’ll figure it out,” Gary said. He was in problem-solving mode.

When we wheeled our coolers into the hospital, our peculiar luggage created a small scene. 

“Is that a liver?” somebody asked. 

“And a few beers,” Gary flipped back. I giggled at the guy’s expression.

While nurses got my chemo ready, Gary put on his gas mask and opened a cooler. Steam rose up like a cloud over a witch’s cauldron, dry ice mixing with the stale air of the hospital. His gloved hands grabbed a cap covered with thick white frost. We wrestled it onto my head, synching it tight with velcro.

The shock nearly made me vomit, and I instantly understood the warning about frostbite.

“Hand me a pantyliner, will you?”   

Gary had brought me an electric blanket and a coat, but I was shivering. Twenty minutes later, he whipped off my cap which had cooled to minus 15 degrees. Ironically, chunks of my hair got caught in the velcro, ripping out precious strands. 

“Hmmm, we’ll have to figure out a better way for the next one,” Gary said, brushing hair off my blanket. 

When he fit me into a fresh cap, I could see pain behind his smile. He hated inflicting the cold, watching me wince.

I felt the shock again, and we settled into a rhythm: Ice cap on, chat, ice cap off, replacement cap on. Seven hours later, my head was numb. I felt tentatively triumphant.

In two weeks, at my next chemo infusion, we started again.

But by the end of that session, fatigue was taking its toll. The cost was weighing on my mind, and fumes from dry ice were making Gary sick. 

A few nights later, I combed out my long blond hair after my shower.

“Hey, Gary, can you come here?”

A spoon clinked against a ceramic bowl. He must have been eating ice cream.

“What is it?”

We both stared at the sink. “Looks like a bird’s nest,” he said, grabbing blond strands off the porcelain. “The lady said some shedding would be normal.”

“Can this much be normal?”

The next morning, my pillowcase was covered with hair. “That pile looks like a cat.” I said. “A small one.”

He smiled. “Just a kitten.”

In the mirror, I could see my scalp. Pretty soon, the little bit of hair I had left was clumped in three dreadlocks, dangling from a mostly bald head. Part of me was relieved.

Maybe it’s a good thing.

As the sun went down that night, I grabbed scissors, one for my husband and the other for our daughter. “Let’s cut it.”

Lauren lit up at the prospect of adventure before bedtime and we headed to the backyard. The sky was streaky pink, and Lauren’s chubby fingers felt cool on my neck. 

“We’ll scatter it for the birds,” I said and watched my fragrant locks float away in the wind, a little treat for our feathered friends.

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My All-Too-Honest Answer to ‘What Do You Do?’ as I Recover From Cancer

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It’s not that hard of a question. And it’s one I had gotten pretty good at answering. I was working for a great school district, pulling out my degree in education and getting back in the game after being at home raising mangy boys for a decade.

It’s not like we have fallen off the face of the Earth; it feels more like we slept through a year. I have gaping holes in my memory of the boy’s sporting events, their academics in general, holidays and conversations with my husband, Brian. It’s like I had partial amnesia from December until the past few weeks.

So this simple question — asked in all politeness as the starting point of the most basic of conversations — seemed hard. Because I couldn’t find the answer.

“What do you do?”

Huge, long, awkward pause. And then, because it’s the only way I know how, I gave an all-too-honest answer that I’m sure had she and her husband planning their exit strategy.

I’m not sure I had told her. I’m healing. I’m recovering from a wee bit of cancer and trying to figure out our life again. I don’t know what I do. I’m sure she could see the wheels flying in my head as I tried to put into words our new existence. Because it does feel new. Nothing after cancer feels the same. It might in time, but I’m not relishing that moment. I love the new perspective and intimacy that has been gifted to me. I work to hold on to it.

So I sit on my couch and read Jojo Moyes novels. I sit on the same couch and enjoy my new wallpaper. I snuggle with a fat pug and a beautiful golden and make conscious decisions to save up my energy reserves so those three boys that matter most get the best of my love when they return home.

Photos. I take pictures of beautiful kids and beautiful families. Yes, I’m snapping away and earning some Target money, but I’m the recipient of a deeper joy from these images. I’m capturing life. Life and laughter and love. How I wish that I had taken the time and money to get a great family portrait while I still had hair.

Yes, for vanity’s sake. It will be years before I look like myself again. But also because our photo history is forever marked now by the before and after of cancer. And in our house, the onset of cancer brings the memory of the onset of epilepsy. And hearts changed and matured by having to muddle through too much in one year. So I wish I had taken a picture of simpler times.

I try to be more purposeful in the allotment of my physical and emotional resources. I feel overwhelmed with the repayment of the good. Yes, I understand that it isn’t a direct exchange. I will never match person for person the help that we have been given. So paying it forward will be our pleasure for now and the rest of forever.

I pray more. I read my Bible more. I pray out loud for my kids while I embrace them more. I want them to hear the promises I know to be true for them. I can’t handle if one other person gets sick or injured in my home, so I ask God extra hard for these things. Huge guardian angels around my boys and that dog with a very small brain who is a danger to himself.

It won’t be like this forever. Six months from now I will really need a better answer. But for now this is enough.

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Follow this journey on the “More to Learn” Facebook page.

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Old Footage Appears to Show John Lennon Mocking People With Disabilities

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A television series called “It Was Alright in the 1960’s” has brought to light footage that appears to show Beatles legend John Lennon mocking people with disabilities, the Mirror reported.

In the clip from a television appearance in the 1960’s, Lennon can be seen making faces, moving his hands and talking in a way that appears to be mimicking people with cognitive disabilities and delays.

See the footage below: 

The video, despite being filmed more than five decades ago, sparked a lot of outrage on Twitter where people used the hashtag #AlrightInthe60s to voice their opinions about it.

Lorainne Bellamy, the spokeswoman for Mencap, a U.K. charity for people with learning disabilities, called the footage “shocking and painful to watch,” The Independent reported.

Times may have changed but I always find it hard to believe how such famous people can have these horrible views about real people,” Bellamy told the outlet. “I have seen attitudes towards people like me change a great deal since I was a child. It wasn’t uncommon for people with a learning disability to be publicly laughed at and made fun of at the time… Much has changed but there is still a long way to go before the public realizes people with a learning disability have the same hopes, dreams and feelings as anyone else, and should be treated with the same level of respect as anyone. We are not here to be laughed at and I hope that today’s celebrities would never consider acting like this.”

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7-Year-Old With Autism Pens Sweet List of Qualities a Friend Should Have

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Reddit user kaz_a has a 7-year-old daughter with autism, who for homework one day had to write down what qualities she’d like in a friend. She penned a list of four traits, which her parent later shared on Reddit.

 

 

The list says “Wanted, a friend. Somebody who…” followed by:

Understands me.

Knows I have autism.

Smiles all the time.

Keeps me company when I am sad.

The photo, posted in the r/autism subreddit on Monday, September 21, struck a cord with redditors.

That’s what we all want,” Reddit user zombiepunch said.

I wish I knew I had autism at that age,” Reddit user bobtheengineer314159 commented. “Not only would have it helped me to understand why I was treated so differently than the other children, but I also would never have felt like my life before knowing was a lie.”

 Related: 10 Truths About Making Friends When You Have Autism

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This Couple’s ‘All-Autism Wedding’ Proves Love and Relationships Are for Everyone

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Photo courtesy of Olive PR Solutions

During the weekend of September 26 and 27, hundreds of people will gather in San Diego for the second annual Love & Autism: A Conference With Heart conference. The event centers on love and relationships as they pertain to people of all ages on the autism spectrum.

“My goal is to start the social movement to break down the misconceptions that people on the spectrum do not want and need relationships,” Dr. Jenny Palmiotto, a marriage and family therapist and the founder of Love & Autism, said in a press release for the event. “Autism is always there and love is always there; it’s nothing that an individual needs to overcome.”

But this year’s conference is special for another reason. On September 26, Anita Lesko and Abraham Nielsen, two adults on the autism spectrum, are getting married. And they’ve chosen the Love & Autism conference as their wedding venue.

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Abraham Nielson and Anita Lesko. Photo courtesy of Olive PR Solutions

The event, dubbed the “First All-Autism Wedding” by its organizers, will feature notable figures in the autism world, including bestselling author Dr. Temple Grandin and global autism ambassador Dr. Stephen Shore, according to the event’s CrowdRise page. Additionally, Lesko and Nielsen’s entire wedding party is comprised of adults who identify on the autism spectrum.

Lesko, 56, says she and Nielsen, whom she met at her Asperger’s support group in 2013, decided to marry at the conference because they wanted to give people with autism who aren’t often invited to anything the chance to attend or participate in a wedding. But they hope the event goes deeper than that.

“The big picture is to reach as many people as possible to start changing the world’s views of autistic people,” Lesko told The Mighty. “Abraham and I want to give hope to the millions of people with autism and their families that love, relationships and marriage are possible for those of us on the spectrum.”

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Photo courtesy of Olive PR Solutions

Dr. Palmiotto, who’s planning Lesko and Nielsen’s wedding in addition to organizing this year’s conference, says the couple is already bringing people together. Over the past few months, many people on the autism spectrum have contacted her asking how they can participate in the big day.

“The message is so positive and this community wants to stand by our message,” Palmiotto told The Mighty.

“I’m hoping [this wedding] will do what most weddings do [and] provide a moment in time to celebrate what life is really about: love,” she added. “This wedding and the conference as a whole is not about becoming more ‘normal,’ whatever that word means — it’s about learning to love yourself and open yourself up to the beauty that loving others may bring.”

Lesko agrees, adding that for her, it all comes down to acceptance.

“Every human being wants to feel accepted and loved. That’s just basic human needs,” Lesko told The Mighty. “We want to be included in our classrooms, our communities, our neighborhoods and simply everyday life. We are capable of giving and getting love. Abraham and I want to help our autism community, and we want to help the rest of the world to understand and accept us.”

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Photo courtesy of Olive PR Solutions

To learn more about the Love & Autism conference, head here. To learn more about Anita and Abraham’s wedding and help fundraise the event, head here.

Fundraising Websites – Crowdrise

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Woman With Down Syndrome and Autism Turns Her ‘Limitation’ Into Own Business

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Despite never learning to read or write, Emma Lynam has her own business.

The 21-year-old from Queensland, Australia, has Down syndrome, autism and a cleft palate, according to the video below. Her mother, Jo Lynam, often worried about her daughter’s future and lamented the fact that she never learned to read or write, but what appeared to be her daughter’s limitation turned out to be a strength. Emma Lynam now has her own business shredding papers — her inability to read makes her an ideal person to handle confidential documents from companies and credit unions.

Her mother went from worrying about her daughter’s future to watching her “Master Shredder” blossom and succeed on her own.

I just cannot speak enough as a mom about how gratifying it is to see my daughter want to get up and go to work and feel fulfilled,” Jo Lynam says in the video below. “She’s doing something. She’s helping and making a difference in her own life, making her way like an other 21-year-old.”

Get the full story from the video below: 

 

h/t Reddit Uplifting News

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