Monthly Archives: June 2015

The Hairy Truth About Going Bald

This is a guest blog post by MyLifeLine.org member, Joni Hemond. 

I’ve always loved my hair. It is thick and wavy and a nice color. My few strands of gray have multiplied over the years but are still relatively hidden. I can wear it short, long, and any way in between. It is flexible and forgiving and generally looks acceptable, despite the fact that all I do is wash-and-go.

Joni-And-Kids

Joni with her three children.

Knowing my hair is going to fall out completely is a strange thing. Personally I’ve mostly had hair styles that reflect convenience over style, but wonder now that I won’t have it anymore if I should have been bolder with my hair decisions. I’ve become fascinated with the way people choose to style it and color it and take care of it, with the way it can give you a small glimpse into someone’s personality, or make a huge statement.

I also have a new and interesting camaraderie with middle-aged bald or balding men. I study their contours, their scars, their moles, their divets. I wonder about their style choices: Shave all the way? Grow out part of it? Hair replacement? Cover it with a cap? Sunglasses on top of the head? Pair it with hipster eyewear and a leather jacket? As a woman, it’s a little more difficult to incorporate baldness into your personal style. I do have two advantages over my male counterparts, however: 1) mine will grow back and 2) I don’t have the added nuisance of nose, ear, and back hair sprouting up and demanding attention.

There was a radiologist at my medical school who had the strangest way of dealing with his hair loss that I’ve ever encountered. His only remaining hair grew in a half circle on the sides and back. He chose to grow out the above his left ear. And I mean he GREW IT OUT. Like three feet. He took that wall of side-hair and wrapped it around the top of his head like a turban. This was all well-and-good indoors, or on a calm, sunny day. My friend and I happened to walk out of the hospital behind him on a day that was very windy. Oh, boy. That flap of hair blew straight up to the sky despite his best efforts to contain it. Clever, but not an option for me (because, of course, I will have no side-hair to grow out).

A few years ago, my daughter Isabel, who was nine at the time, decided she wanted to grow her hair to donate it. I thought it would be a fun experience to go through together, so I did it with her. On Mother’s Day 2013, Isabel donated ten inches and I donated fourteen. Mine had to be cut off in two separate pony tails because it was so thick. Oh, the irony.

The treatment I’m on makes you lose your hair, pretty predictably by day 18 of chemo. In the counseling I received from my oncology team, I was told once it starts it doesn’t thin much, but rather just falls out within two to three days. My hair loss has not occurred in this typical pattern. I am going to share my shedding experience (so far), and I will give you a warning that my honesty may be a little bit too much information for some. But it’s funny. And I know you’re curious. Here goes.

Something odd happens when my sisters and I talk to each other on the phone. Our voices on the other end of the line trigger us to have to use the bathroom. It is a phenomenon I’ve coined “SistaLax.” Well, I was talking to my littlest sis on Day 15 of treatment (on speaker phone with her and her friend, no less), when SistaLax hit. I was still chatting as I sat down on the toilet so it took me a second to register the collection of hair on the edge of the seat. I thought, “Why in the world is there hair all over…?—ah, right, I’m losing my hair. But, wait, here?!?!” I informed my sis and her friend, and we laughed like crazy. Then I yanked the hair on my head and sure enough, out came a fistful. That was within 24 hours of my second chemo. And for the last five days, it has continued to fall out, one fistful after the other, with no clear end in sight even as I write this.

Several friends and acquaintances who have been through chemo shaved their heads once the hair started falling out, which was an empowering experience for them. I think it is a brave and beautiful thing to take control and own it like that. But I wanted to experience the hair loss, strand by strand. It is a reminder to me that this treatment process is raw and gut-wrenching and painful and sometimes ugly. It is a fight. I am battling something that would kill me if didn’t go in, fists up, and that is made evident by every strand that is lost. I study the tiny follicles, little buds at the end of the hair. I notice the texture and color and softness. I weave my fingers through what has fallen onto the countertop before I throw it in the trash.

Losing hair hurts. My scalp feels tender the way it does when you’ve had your hair in a tight pony for a long time. It hasn’t come out in clumps but instead has thinned all over, particularly at the front and sides. I currently have the worst style of all styles: a mullet with a receding hair line (complete with my widow’s peak, which is going strong). At first I kept a Buff around my head just to contain the shedding, and now I wear it to cover up the whole rather hideous look. I’ve kept my three kids involved with every step of the process. They each cut a lock of my hair before this all started, and have helped me brush it and pull it out, and massage it when it aches. Lucien, my five-year-old, has been the most involved…he even lays out paper towels on the side of the tub of for me to lay the fallen hair on when I take a shower!

It’s not fun, but it ain’t all bad. My oncologist put me in touch with someone who grew his hair out for four years in honor of his mother, who passed away from breast cancer. His friends donated enough money to have a wig made from it, of which I am the lucky recipient. In a few minutes I’m heading to a party my fabulous friends and family are having so I can get me some stylin’ head coverings. I can’t wait to give lots of “port hugs.” And the little things? No shaving, no tangles, no blowing drying. And a cheap, pain-free Brazilian.

So what have I learned about the way I want to be bald? I’m going to remember the process. And I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

About the Author: Joni is a happily married 41-year-old mom to 3 children (ages 6, 10, 12). She works as an academic pediatrician and feels that her job treating patients and teaching future physicians is a privilege. Outside of work, Joni loves running, writing, strategy board games, traveling, hiking, snowboarding, and hanging with family and friends. She was diagnosed with Stage 3 breast cancer in March 2014. In addition to fighting with chemo, surgery, and radiation, she’s given cancer an extra kick with exercise, a positive attitude, and writing about her experience on MyLifeLine.org

What have I learned about the way I want to be bald?  I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

Speak Up During Men’s Health Month

This is a guest blog post by Ivy Ahmed, Director of Patient Education for ZERO – The End of Prostate Cancer.

At ZERO – The End of Prostate Cancer, our mission is to end prostate cancer. We lead the fight to end the disease by advancing research, encouraging action, and providing education and support to men and their families.

June is Men’s Health Month and an important month here at ZERO. This month we launched our #DoItForDad campaign to create awareness to end prostate cancer. As ZERO’s Director of Patient Education for ZERO, I love this month because it is a wonderful opportunity to shine a light on a disease that affects 1 in 7 men and begin a dialogue encouraging men to take care of themselves and to take charge of their health.#DoItForDad

I kicked off Men’s Health Month by attending the largest conference addressing research and advances in cancer, the Annual Meeting of the American Society of Clinical Oncology. It was a great opportunity to learn about exciting research that is being done to help us end prostate cancer. Such tremendous progress is being made every day to better understand the disease and find new ways to fight it. I also had a chance to see our friends from MyLifeLine.org and learn more about the great work they are doing every day.

In addition to attending the conference, I participated in a virtual Blogger Summit as part of the Men Who Speak Up program launch. The goal of the program is to bring awareness to the signs and symptoms that of advancing prostate cancer so that men with advanced disease can talk about their symptoms and learn about treatment options available for them. Visit the site to learn more about what men with advancing disease are saying and to find some helpful resources to maximize each doctor’s visit. The program was developed through our partnership in the International Prostate Cancer Coalition with support from Bayer.

Speaking up about your health as a man is very important especially around prostate cancer. Talking about your health and engaging with others doesn’t always come naturally, so I’ve included a few tips below to get you started.

  1. Be informed and know your personal risk for prostate cancer. Talk to your doctor about a plan for testing when the time is right for you.
    • The most common risk factors for prostate cancer are:
      • Increasing age
      • African American ancestry
      • Family history of prostate cancer
  2. If you have been diagnosed with prostate cancer, get educated by learning about your options and asking questions. Treatment options for cancer that is still in the prostate are different than those options available for men with more advanced disease.
    • Ask questions such as:
      • What is the stage and grade of my prostate cancer?
      • What are all of the treatment options for someone with my type of prostate cancer?
      • What are the potential side effects from these treatment options and how will they be managed?
  3. Have an open dialogue with family members about prostate cancer and other men’s health issues.
  4. Celebrate Men’s Health Month and Father’s Day by making a difference! Join ZERO in spreading the word:
    • Follow us on social media – facebook, twitter, and Instagram
    • Register for one of our nearly 40 Run/Walks nationwide
    • Participate in our #DoItForDad campaign

Together we can keep the conversation going to save lives and keep families together. To learn more about prostate cancer, risks, treatment, and ZERO, please visit www.zerocancer.org.

Paige’s Squamous cell carcinoma story

Paige had no idea that losing her ability to speak would give her words so much more power.

Paige-Squamous-cell-carcinoma-survivor-photo

Paige, MyLifeLine.org member and Squamous cell carcinoma survivor

On the day she was diagnosed, Paige heard only some of what she was told. “I recall a few basic things the doctor said to me that day: ‘You have tongue cancer, half of your tongue will be removed, part of your arm will be harvested to make a new tongue, they will take a skin graft from your leg, you will have a neck dissection, tracheotomy, and a feeding tube.’ I am quite certain she said many other words of comfort and did not rattle those things off, but that is all I recall hearing, and I was devastated.”

The spot on her tongue that had been bothering her had already been dismissed as nothing by doctors, but once it started affecting her speech she sought another opinion. Speech had become painful, and despite being an otherwise-healthy, 35-year-old, single mother of three, Paige knew something was wrong. On March 28, 2012, Paige was diagnosed with Squamous cell carcinoma of the tongue.

How would she tell her children? Her family? Her friends? Not figuratively—not what words would she choose—how, literally, would she communicate without the voice she had always taken for granted?

Facing months of silence due to invasive treatments, Paige turned to writing. She explained, “I have always been able to express myself best in written words, so I just started to write about all that was going on. I realized I had to tell my friends and family about this diagnosis and I simply could not tell everyone one by one.”

A friend of hers who had also been diagnosed with cancer had used a blog to keep everyone informed, so when she found MyLifeLine.org, Paige signed up for her own free site. She wrote about the medical treatments, the surgeries, and the medications. She wrote about the pain—both emotional and physical.

She reflected, “My site was the only way to express myself and work through all of my emotions. I think that is why it is filled with such raw emotion and why people were drawn to it.”

Throughout her journey, Paige had loving caregivers assisting her and her MyLifeLine.org site was helpful to them as well. One of Paige’s caregivers said, “Not only did her blog help me stay abreast of what was going on with her cancer, Paige included what was going on in her mind. I was able to mourn the sad news away from her to then be strong in her presence.”

MyLifeLine.org was a lifeline for me during my journey. It was my connection to the world, my connection to my own self, and a place where I could be encouraged by others. I am still using the site and will always want it and continue to share my story. Every time someone asks me about my scars I tell them a brief version of events and I hand them the web address for my site on MyLifeLine.org,” Paige said.

Paige-Photo-Quote

George Karl pictured with the George Karl Courage recipient, Roberta Aberle

Jockeys, Juleps & Jazz Wrap Up

Derby snapshot

Pictured left to right: Marketing & Outreach Coordinator, Margo Christenson; Chief Operating Officer, Tricia McEuen; George Karl; Chief Mission Officer, Marcia Donziger; Auctioneer, Reggie Rivers; Board Member, Lizzy Morton

MyLifeLine.org’s annual Jockeys, Juleps & Jazz Kentucky Derby fundraising event was a tremendous success. Friends, members, sponsors and supporters came out in their festive Derby attire to support the mission of MyLifeLine.org and raise vital funds to ensure no one faces cancer alone.

On May 2, more than 400 guests dined on a traditional menu of southern cuisine, sipped on signature mint juleps, viewed a live comedy show, bid on silent and live auction items and cheered on the running of the 141st Kentucky Derby. The event was also an opportunity to celebrate the mission of MyLifeLine.org and honor two awardees with the George Karl Courage and Visionary Awards.

Genentech was awarded the George Karl Visionary Award, accepted by Jen Mills, Director of Advocacy Relations. Their loyal support to our technology and innovation programs has allowed MyLifeLine.org to further our mission of supporting cancer patients and caregivers.

The George Karl Courage Award was presented to Roberta Aberle, a MyLifeLine.org member and survivor of a rare cancer, Primary Peritoneal. Roberta writes on her personal website as an outlet to cope, connect and inspire many with her vibrant and courageous outlook on life.

The Jockeys, Juleps & Jazz event raised over $270,000, allowing MyLifeLine.org to serve even more people affected by cancer and continue to develop innovative and supportive programs for members and guests. Thank you to everyone who attended, sponsored and donated their time and resources to the event. MyLifeLine.org is grateful for the generosity of all the event supporters!

To see more photos from Jockeys, Juleps & Jazz, please visit our Shutterfly site.