Jesse Hershkowitz, pictured below, is writing a memoir that documents his cancer experience. He shares his story with us below.

Ever since battling and ultimately surviving Non-Hodgkin's Lymphoma of Bone, a rare form of blood cancer, in 2006, I have been on a campaign of giving back. My means are my music and performances. My desire is for young adult patients to see and hear someone just like themselves...someone with a similar story who they can relate to. My aim is to help alleviate the overwhelming sense of isolation naturally associated with such a traumatic experience, something I experienced first hand for two years post treatment. My goal is to raise awareness about how paralyzing an effect this can have for a young adult survivor during treatment and in the first few years of remission. 

During my 8 months of intense chemotherapy, it was my passion for Hip Hop and creative lyricism which I attribute to actually saving my life. While being treated I wrote, produced and recorded a ten song Hip Hop album called "Cancerous Flow : Lyrical Journal" which has been pressed up in the thousands and donated to teen and young adult Cancer patients and survivors across the country. 

I am now five years into remission and in that time have become heavily involved in the young adult survivor community. I've attended a number of large events and conferences at which I perform, tell my story and provide copies of "Cancerous Flow" for attendees. Among the most frequent comments I hear is, "Wow, you have such an inspirational story. It's too bad I hate rap." 

In response I've undertaken the writing of "Cancerous Flow : Lyrical Memoir." Planned to be ten chapters with a prologue and epilogue and between 150-200 pages in length, this project is uncensored, brutally honest and vividly raw while at the same time being funny, heart warming and joyous. It is as much a story about Hip Hop and the vital role it played in my survival as it is about the disease itself. 

The Impact 

When you think of Cancer the first two images most likely to pop into your head either of a young child or someone in the age range of a grandparent. Rarely ever do people think of the young adult, 16-40 in age. Those in that age group are often lost in the shuffle, and most often endure their treatment among those vastly older or younger than themselves. 

Hip Hop music and culture has the potential to bind people of different generations and backgrounds. It can be considered the voice of today's urban youth and has long since expanded its reach beyond the inner city to encompass the entire planet. My story is told in that voice and from my perspective as an independent and, as of yet unsigned, emcee of ten years at the time. Exhibiting Hip Hop as it really is, a culture born out of the struggle for survival against all odds, this story is about conquering insurmountable obstacles. It is about a life saved and a life long dream come true. "Cancerous Flow : Lyrical Memoir" tells the story of an underdog determined to persevere at all costs. 

Please consider sharing this page with your friends, family and co-workers on facebook and twitter. Learn more about what I've been up to lately here http://www.seanyrecords.com/ 

Pictured below: LIVESTRONG CEO Doug Ulman, Heidi Adams, Seth Rogen, Will Reiser

Last week, Heidi Adams, LIVESTRONG senior director of engagement and Planet Cancer book co-author, was in Washington, DC, with cancer patients, survivors, advocates, researchers, and healthcare professionals for an advance screening of something unprecedented in cinema: A BROAD-RELEASE AYA CANCER DRAMEDY.

Created by Will Reiser, the writer, and Seth Rogen, who produced and starred, 50/50 received a standing ovation from the understandably tough crowd. 

Heidi wrote about being there for LIVESTRONG (she makes clear that it's not a movie review, but an explanation of why it won over so many in attendance and why it's important); she also got to interview the duo behind the film. 

Learn more about the film and how you can take action here. Once you see it, let us know what you think of 50/50; it will be released nationwide on Sept. 30.

On Tuesday, July 26, in a report released by the National Institute for Occupational Safety and Health, federal officials stated that they cannot reliably link cancer to the work performed by emergency workers first on the scene after the September 11, 2001, terrorist attacks. Dr. John Howard, NIOSH director, promised, however, to "continue to do periodic reviews of cancer for the World Trade Center Health Program." Cancer is common enough, the argument goes, so who can really say the source of emergency workers' cancer?

Enter Jon Stewart, host of Comedy Central's The Daily Show, who famously held a panel on the show in December 2010. He invited four first responders who, sitting onstage with him, took the Senate to task for the filibuster that delayed providing medical benefits and compensation for health complications resulting from responders' prolonged exposure to 9/11 carcinogenic ruins in 2001 and 2002.

In the segment on his Tuesday show, Stewart points out that the bill covers coughing, carpal tunnel syndrome, and laryngitis, but not cancer. ("You get scurvy," Stewart jokes, "no problemo. These limes are on us. But the one disease that you seem to be disproportionately getting, yeah, we can't help you there.")

At worst, covering responders' cancer-related costs in the bill would merely reward those who put in month after hazardous month on the scene after the attacks for their efforts. "How about everyone who worked down there on the pile gets a pass on the exact origin of their personal tumors?" Stewart proposes.

A New York Times piece about the report mentions that Dr. Philip J. Landrigan, head of a 9/11 treatment, monitoring and research program at Mount Sinai Medical Center, has already found eight cases of multiple myeloma, a bone marrow cancer that commonly affects older people, in responders younger than 45. This is, the piece points out, "an unusually high number." Dr. Landrigan and his researchers continue to provide information from their findings to the government.

Please share this news and help spread the word.

Read about navigating the often-infuriating insurance universe with a cancer diagnosis, whether you're covered or not, in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.

Last weekend Dudley Clendinen, a former reporter and editorial writer for the New York Times, wrote about having A.L.S.

There's not a whole lot to say about Dudley Clendinen's piece in the New York Times last weekend other than "read it." He doesn't have cancer. He has a different disease, one for which there's no cure: amyotrophic lateral sclerosis, or A.L.S., or Lou Gehrig's Disease.

Clendinen touches on many things in the piece. There are the healthcare costs so staggeringly high that, to him, adding a few extra months isn't worth it. He describes his mother's own prolonged death, and the already-gone way she looked at him for the last couple of years "as she might have at a passing cloud." He discusses that the realization of one's own imminent death is, in its way, liberating.

Most important, however, is his point that our culture obsesses crazily about how to live, but nobody talks about how to die. "We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges." His delving into this issue, and his own decisions based on what it means to him to live, are brave and moving, and worth remembering. Read it.

Read about how to approach death and dying, from discussing the matter with your children to how to cope with losing a loved one, in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.

 

Shannon Miller, winner of more Olympic medals than any U.S. gymnast (seven total, in 1992 and 1996, including two golds), was diagnosed with germ cell malignancy in January. After having a tumor the size of a baseball removed from a much-smaller organ (her left ovary), the elite athlete-turned-health-paragon underwent nine weeks of adjuvant chemotherapy.

She decided not to keep cancer private, however, and shared her ongoing experience on her Website and radio show, Shannon Miller Lifestyle. She made a video of the wig party at which she shaved her head (in the intro, she is visibly emotional and nervous, but she says that it's a way to take control), and kept up her radio show's schedule despite having to turn away from the mike sometimes to throw up.

Maintaining her schedule was a way to stress to all her listeners and fans to make their checkups, because she almost skipped hers and would've let her stage 1A tumor go undetected for another year.

Miller's gold-medal athletic past helped her face cancer. "I know how to face a challenge," she says in this interview: by setting goals. Hers was to attend her brother's wedding in Oklahoma soon after treatment, which ended on May 2. She made it.

Learn about the craziness of being diagnosed as a young adult, Getting Your C-legs, and read more about head-shaving parties in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives. 

Last week, the New York Times published a piece about something that gets a lot of attention from this crowd: what to say and what not to say to a cancer patient. From avoiding pity compliments to reminding readers that, should they write to a patient, concluding with "Don't write me back" is more helpful and relief-inducing than they probably think, the Times's list is worth reading. 

Most importantly, the piece stresses being assertive in providing assistance, because cancer patients, particularly young adults, will be reluctant to respond to "How can I help?" with a complete list of what they need. So empty the trash, get the mail, do the dishes, unpot dead plants, etc., without waiting to be tasked specifically by the patient. 

Are there things left out of the piece that you think need to be included? What's the best practical favor you've seen somebody do, unasked, for a cancer patient?

Read an entire chapter ("People") that explores the interactions among a cancer patient and family and friends, complete with advice from both patients and caregivers about what to do/say and what not to, in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.

Surviving and Moving Forward: the SAMFund for Young Adult Survivors of Cancer provides financial assistance to young adults as they move forward with their lives after cancer. (Also, SAMFund founder Samantha Eisenstein Watson is a contributor to the Planet Cancer book.) If you:

• have had cancer

• are finished with active treatment

• are between the ages of 17 and 35

• are a US resident or citizen

You're eligible for a SAMFund grant! The Webinar is Tuesday, June 7, at 3pm EST; register here. If you have specific questions you'd like them to discuss, please email them to grants AT thesamfund.org before tomorrow afternoon.

 

Our fine friend Carrie Morse lives in Washington, D.C., with her ferocious dog/four-legged angel, Deke. When she's not roaming the halls of Georgetown Hospital, she can be found at almost every home Washington Capitals hockey game. Between hockey seasons, Carrie spends as much time as possible at her family's cottage in Northern Michigan. Did we mention that she celebrated her thirty-seventh birthday by taking trapeze lessons? 

On October 29, 2010, my dear friend and colleague’s husband was diagnosed with Stage IV esophageal cancer. He was 32. Cancer beat down their door and entered their lives and turned everything upside down and inside out.

I went into Super Cancer Survivor mode, donned my cape and tiara, and did everything I could to help. From the moment they mentioned the C-word, Kay and I exchanged dozens and dozens of e-mails; and I was one of the first people she called after Dylan received his diagnosis. From that moment on, we exchanged hundreds more e-mails and talked constantly on the phone. I visited them often and was one of the few people that Dylan saw in the early days after he was diagnosed.

I’ve gained a crazy amount of knowledge during my cancer journey—I have a colostomy (I call it “Vesuvius”) and now have follicular lymphoma (it’s in remission right now)—and my experiences have given me the ability to explain things in a way that’s easy to understand. With Kay and Dylan, I shared every possible thing I could think of that might help. At work, I became the main source of information for people about what was happening.

I also had to take on extra work and some new responsibilities, as Kay was away from the office for the better part of four months. Supporting Kay as a caregiver was critical, too. I e-mailed almost daily to check-in and we had early morning “meetings” at her house when Dylan was still sleeping. We had to talk about work stuff, so I could slip in “How are you?” with work e-mails. But I also sent ones that just said, “Thinking of you and sending hugs.”

One morning I was going to go over and make French toast. I was just about to leave and saw I had messages on my Blackberry. One said “don’t come” and then the other said “f- it, just come.” So I decided to call Kay and instead of going over there we talked on the phone for over 45 minutes. She just needed to talk. I wasn’t physically there in her dining room with her, but she knew I was with her. It was gut-wrenching watching her go through this horrible experience with her husband, and it became even worse when Dylan died in late February.

Kay has returned to work and I am amazed at her strength and grace. We see each other every day and we’ve had some long talks since she’s been back. Once, after a meeting, I asked if she needed anything else and she said, “A hug.” Dealing with some of the business aspects of death has been hard for her and some of her other friends and I have gone with her to help make some of these transactions easier. Kay messaged me the other day and mentioned being in awe of my strength. But I don’t think she realizes how strong she is herself and that I am in awe of her. And I will always be in awe of what an amazing and incredible act of love her care of Dylan was while he was sick. She was (and is) truly incredible.

It’s all been really hard for me, too. I feel like a tool even saying that, but it’s true. My heart was broken once again by this wicked disease. Watching what they went through brought up and still brings up my fears about the lymphoma coming back. It makes me angry and it makes me sad. I stayed strong for people I work with, as they’re all younger than me and this is the first time someone close to their age has had cancer and they’re scared and sad, too. The night I had to tell my two closest colleagues that Dylan had cancer, I felt like I was telling a child that there was no Santa Claus or that the Tooth Fairy was not real. 

 Their shock was that someone as young as Dylan could get cancer, while mine is at how many people Dylan’s age get cancer—but most people don’t know what we know on Planet Cancer.  Dylan started going downhill in late January, the same time I started treatment after my first diagnosis, and I can’t seem to stop thinking about that when January rolls around each year. F-ing cancer! Why can’t you just get out of my life and the lives of people I care about?!

But I’ve realized that cancer isn’t going to leave me alone. Whether it’s my own disease and the effects it’s had on my life or other people’s cancer and doing what I can to help them—cancer is just going to be part of my life. And I think that I’m beginning to accept that.  C’est la guerre.

Read Carrie's moving and funny essay, "What It's Really Like to Have a Colostomy," and gain all sorts of useful knowledge about being a caregiver (including what not to say to a cancer patient and what they really need from you!), in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.

We're taking it back to our roots during Young Adult Cancer Awareness Week. This Thursday, April 7, at 6 p.m., Heidi and Chris will be visiting Fairhope, Alabama's Page & Palette Bookstore to talk about the Planet Cancer book and relive their glory days playing soccer at nearby Bayside Academy. We look forward to seeing old and new friends later this week in this beautiful area of South Alabama. Here's a piece that talks about the book in preparation for Thursday. Many thanks to Page & Palette for having us!

On Friday we're heading to New Orleans for Saturday morning's Tour de Lis, a fun walk/run/bike event that was started in honor of Josh Lipschutz, a brain cancer survivor and Tulane grad (who contributed "What It's Really Like to Receive Brain Radiation" to the Planet Cancer book). Tour de Lis has raised more money pre-event this year (more than $250,000) than any prior year; hats off to the organizers, led by our friends Carol and Harold Asher! 

What are y'all doing for Young Adult Cancer Awareness Week?  Let us know, and join us if you can!

Read Josh's essay, as well as many useful pieces about the ups and downs of staying involved during and after treatment, in Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.

 

 

In The Amberley Diaries, 26-year-old Amberley Kowalski brings us along for her Non-Hodgkin's Lymphoma treatment.

It’s been a long time since I’ve written anything on here. Since my last post a lot has happened. I finished not 6, as was originally planned, but 8 rounds of chemotherapy. The chemo wasn’t fun by any means, but it really wasn’t too bad. I was lucky that my side effects were minimal and I was able to continue going to school through all of it, though I did give myself a break by taking a leave of absence from work to focus on school and getting better. Chemo wasn’t that hard to get through physically; emotionally, however, it took its toll.

This is going to sound really strange, but even though getting diagnosed with cancer at 25 was devastating, I didn’t find it hard to be optimistic in the beginning. When this whole crazy journey began, even though I would have my bad days here and there, overall I sincerely felt so optimistic about how I was going to just crush cancer; I felt that I could get through it no problem. I even felt, I know this is weird to say, but almost special in a way.

Not to make it sound like I was “happy” I got cancer, but so many positive things seemed to come out of it in terms of how it strengthened my relationships and made me a better person that I felt almost as though I’d been chosen to have this disease; maybe I was one of the few strong enough to carry this burden. Even though I’d been given horrible news, I felt invincible in a way.

And at first, it seemed like maybe I was. Chemo was going extremely well and my optimism only strengthened as people kept supporting me, telling me how proud of me they were and how great I was handling everything. After my third round of chemo I had a PET scan to check my progress and was blown away with happiness to find out that my Stage 3 disease was already gone. Even though I was only halfway through treatment I felt as though the battle had been fought and I had already emerged victorious.

My sixth round of chemo was supposed to be my last. I went in for my first post-treatment scan more excited than nervous about getting the results. I was fully expecting a repeat of the last good news—I mean, I’d kept doing chemo, so there was no way things would be any worse, right? This was over winter break and I was so excited to start the next semester cancer-free. My hair had even started to come back. My family and I went to my appointment to get the results fully expecting to hear those magical words “remission” and go home and celebrate. But unfortunately, that’s not how my story was to unfold.

Read the rest of this post »