stupid cancer

Recovery

Feb 04

Any cancer survivor knows after treatment, a recovery period is usually necessary. As a two-time cancer survivor of Non-Hodgkin’s Lymphoma I understand recovery is half the battle. In my first diagnosis at age 16, I underwent heavy doses of chemotherapy and radiation therapy. Part of my protocol was a process called maintenence where I would follow up once a month for a small dose of chemo. By the time I was 18, the maintenance chemo became less demanding and I decided I would, as I(2)Y says “get busy living” and apply to college.

Once I was accepted to Syracuse University, I was excited but nervous about going away to school. Of course, the normal things like living away from home but also some questions regarding my health. For example, where would I go for my last few treatments when I was away at school? How would I get to them if I didn’t have a car? And would I realistically feel well enough to make it to class?

In my first semester at school I faced some struggles but I really jumped in with two feet. I decided I would make up for lost time and join as many clubs and committees as I could. It felt great to be part of this new community. Recovery and survivorship can be the icing on the cake after managing a painful period of your life. But getting back to life after cancer is often different then it was before. When I got to campus I wanted to be active but often would have to put things in perspective. I was often still tired so I went to bed early so I could manage my school day without falling asleep in class. I also had to build up my endurance so I planned plenty of time walking to class since I walked slow and the hills were tough for me at first. The most important thing for me was to understand that after I was past cancer I could resume a normal life, even if I needed to make some routine changes. Each day became easier and life soon felt like normal. This is when I realized my recovery was over and I survived!

Heather Buchan

Heather Buchan is a two-time Non-Hodgkin’s Lymphoma survivor from New Jersey. Her first diagnosis was at age 16 in 2008. After high school and first semester in college she relapsed in 2010, requiring more treatment and ultimately a bone marrow transplant. After a perfect match transplant from her older sister, her cancer is cured and currently attends Syracuse University in the S.I. Newhouse School of Public Communications.

Why I Am Going To OMG2013…

Jan 29

By Guest Blogger Scott Slater

I’ve been asked to write this blog to explain my reasons for attending The 6th Annual OMG! Cancer Summit for Young Adults this April 25th-28th in Las Vegas. As I sit down to write, I realize this is a daunting task indeed, because I have many, many reasons. But first, a little history; I am a testicular cancer survivor. My cancer journey began over six years ago in the summer of 2006, when I found a lump mere centimeters across that would change my life forever.

Those of you who have experienced the joys of cancer treatment–or who are currently experiencing the joys of cancer treatment–already know this part of the story all too well. The months that followed were a whirlwind of doctors, waiting rooms, tests, procedures, surgeries, needles, radiation treatments, nausea, anxiety, stress, you name it. But this blog isn’t about all that, it’s about what happened after the whirlwind was over.

On October 13, 2006, I showed up for my last round of radiation, after a total of five and a half weeks of glow-in-the-dark fun. Everyone at the clinic was all smiles: “Congratulations! You’re done!” Although I certainly shared in their enthusiasm–believe me, no one was happier than I was that I no longer had to subject myself to that anymore–I left the clinic that day feeling, well, not quite “done.” What would happen now? There were years of CT scans and other checkups in my future, to be sure, but how could I return to my “normal” life after all of that? Why did I feel like I wasn’t connecting to some of my friends the way I used to? Why was I getting so many blank stares when I tried to talk about what I had been through?

I began to look online for support groups. I felt a burning need to talk about what I had just experienced with other people who “got it”–people who knew first hand what I had been through. I found a cancer survivor support group for men at Sloan Kettering in New York and made arrangements to attend. I arrived to find a group of 14 prostate cancer survivors in their 50s through 70s. And though this was a bit unexpected, I decided that the opportunity to talk to a group of people who could understand where I was coming from would still be a valuable experience.

Except that they couldn’t. Not really, anyway. It became clear to me that the ways in which I had been affected by cancer, as well as my concerns while going through the whole ordeal, were quite different than theirs. I wanted to talk about how this was going to affect dating. What it would mean for my sex life. What it would do to my fertility. And what it would mean for my life 20, 30, 40 years down the road. This was not the world these other men were inhabiting. I wanted to curse, and rage, and use lewd jokes as a coping mechanism. (I quickly learned that they didn’t.) I knew that I needed to find people like me, and it was early in 2007 that I saw a flyer for a group called “I’m Too Young For This!”, specializing in advocacy and awareness for young adults affected by cancer. It sounded perfect–and it was. For the first time I was able to meet with, talk to, and most importantly befriend other young adults who truly “got it.”

In 2008 I attended a one-day conference co-sponsored by I’m Too Young For This! and The Leukemia & Lymphoma Society, called “OMG! A Cancer Conference for Young Adults.” It was incredible event, not only because of the informative panels, but for the amazing opportunity to meet nearly a hundred young adult cancer survivors all at once. That conference was five years ago, and my how we’ve all changed: “I’m Too Young For This!” is now known simply as “Stupid Cancer”. I’ve run smack-dab into that brick wall known as “turning forty.” OMG has evolved as well, taking place every year since then, and I’ve been to every single one. I’ve watched it go from a one-day conference with 100 attendees held in New York, to a three-day event with over 500 attendees in Las Vegas last year. This year OMG will be a four-day event with even more survivors, caregivers, doctors, specialists and professionals in attendance.

So why do I keep going back? For the first year or so of my survivorship, I refused to use the phrase “cancer survivor.” Why, I thought, would I ever want to define myself by an event which was by far the worst thing I had ever endured? No, I was fully content to leave cancer behind forever. But Stupid Cancer, and in particular the OMG Summits, taught me two important things: 1. I will in all likelihood never be “done” with cancer. It is part of who I am now; and 2. The young adult cancer survivors I’ve met are some of the most amazing, genuine, kick-ass people I have ever known. There is absolutely nothing like spending a weekend in Las Vegas with hundreds of brave, determined, real, inspiring, and–let’s face it–crazy, fun souls. You might think OMG is a weekend spent thinking about and discussing cancer. For the most part, the panels and workshops are that, to be sure. But at the clubs, or at the pool, or at dinner, or in the lobby, there’s an unwritten bond where you can simply say, “Hey, you’ve been through that too. Let’s talk about ‘Breaking Bad’ instead.”

With each passing OMG I have attended, I am humbled at how much there still is to learn. How much there still is to experience. How much I still need to grieve about cancer. How much I still need to laugh about it. And how much I need to get really, really angry at it. This was never more true than last year. I can’t piece together any eloquent way to put it, so I’ll just say this: OMG2012 was nothing short of a cathartic shitshow of emotions–laughter, tears, sadness, anger, you name it. I hugged dear friends I had met at previous OMG Summits, and I met new friends I can’t wait to see again this year. With each year I get more excited at how I can give back to the people who are just starting their journey. Maybe that’s just me moving into “elder statesman” mode at the ripe old age of 41.

To be honest, words can’t really describe what OMG has meant to me over the years. If you haven’t already, you’ll have to experience it for yourself. I can tell you it’s been invaluable to me. Of course, I’d also be remiss if I didn’t mention that there are worse places to spend a weekend in April than Las Vegas. It certainly didn’t suck to lounge out by the pool during a break, or to party on a balcony on the top floor nightclub of the Palms Casino with a panoramic view of all of Las Vegas. I could go on, but well, you know–What happens in Vegas stays in Vegas.

What happens at OMG, on the other hand, stays with me forever.

Scott Slater

Young adult testicular cancer survivor Scott Slater is an Independent Marketing Consultant at Ambit Energy as well as a singer/songwriter and producer for Michelle Hotaling. They released our their CD “Chained By Dreams” in December 2006, and it is available at http://www.cdbaby.com/cd/hotaling. For more information, visit Scott’s LinkedIn page at http://www.linkedin.com/in/slaterama.

Ways to Beat Boredom in a Hospital Stay

Jan 28

If you have ever needed to stay in the hospital for an extended amount of time, chances are you probably got bored. After my stem cell transplant last May, I was stuck in isolation for 154 days until my blood counts came up. If I got a fever when I had my port in, I also had to wait it out in the hospital until my immune system was stronger. Other times I had to be inpatient when chemo was especially tough or had to be flushed out of my system quickly.

Granted, most of the time I was in the hospital I didn’t feel that great and wanted to just sleep to try to take my mind off the nausea, pain or side effects I had from treatment, but other times being in the hospital just felt like a whole lot of waiting around. This is why I have thought of things to do pass time (since hospitals are notorious for having bad cell phone reception).

Ways to Beat Boredom in a Hospital stay!

Check out the StupidCancer.org and Like us on Facebook
Subscribe to Stupid Cancer Show iTunes Podcast
Pick a new TV series on a website like Netflix or Hulu and start at season 1
Watch Movies! The hospital may even lend you your favorites or movies you have never watched before.
Ask your nurse if she can set up an activity to do with other patients of the same age or diagnosis
Play a classic board or card game with a visitor or roommate for example: Apples to Apples, Jenga, Scattergories, Scrabble or Cranium
Start a book series or read the book Sadako and the Thousand Paper Cranes
Do a craft or scrapbook. I learned to knit and make all kinds of bracelets and key chains
Get a crossword puzzle book or Sudoku book
Play games online or on a hand held game system

Hopefully you will find a way to keep busy so your stay does’t seem so long!

Heather Buchan

Finding THE Perfect Wig

Jan 21

As a 2-time cancer survivor of Non-Hodgkin’s Lymphoma I found finding the right wig made me more comfortable going about daily life. I wasn’t much of a scarf or turban girl even though I owned several of each. I will never forget that morning when clumps of hair fell out in handfuls as I showered. When I slept, hair would come out on the pillow. I lint rolled my bed and head to try to keep away the reminder that I would soon have no hair. To conquer the fear, I built an army of blonde wig heads shortly after shaving my head.

I started out with synthetic hair since it was cheaper. I picked out a short style but found that since the back of my neck showed, the hairline did not look natural because when I changed position so did the wig. So I decided to try a long hair wig. This time I had a problem with the itchiness and heat it produced. Even with a “gel band” a strip of squishy silicone that had Velcro at the hairline and a wig cap, I was still uncomfortable.

A funny story I like to tell is driving with my synthetic wig. As it got hot and itchy I liked to take it off and throw it in the passenger seat. One day as I was driving, a mailman was walking on the sidewalk and saw me take my wig off. The look on his face was priceless as he did a double take. He had no idea what happened.

The benefits of a synthetic wig is when you wash it, it will keep the original style and shape. For curly hair this might be best. I wore a curly wig to my prom and dropped it off at a hair salon for them to add some sparkly hairpins. A huge disadvantage to a synthetic wig is you cannot style it with a curling iron or straighten it; the synthetic “plastic” will melt. Also the cap is not exactly fitted to the shape of your head so you my need double sticky back wig tape to keep it in place.

All these discoveries lead me to get fitted for a human hair wig. I feel in love with it right away. The cap breathed better and was not as hot as my synthetic wig, even though my synthetic had a monofilament “super breathable” cap. I could style my human hair wig on the wig head. The hair was beautiful and soft and I finally felt secure with my wig. I knew it wouldn’t fall off.

The best way to make sure your new hair looks real is to break it up in someway, either with headbands, bows or hair clips. Some girls even cut bangs so you can’t see the hairline. The hairline is the give away. There are many styles to order or cut that look natural such as layers or side bangs or a face frame.

Going through treatment is hard enough but loosing your hair can be even worse for some people. Not all people feel comfortable wearing wigs. Some people like a hat or just going out with no hair. Find something that makes you comfortable.

Heather Buchan

Keeping Friends and Staying In Touch

Jan 14

After my diagnosis of Non-Hodgkin’s Lymphoma my friends and family were shocked. Many people react differently. There was a network of people helped me get through some tough times including some people who I was never all that close with showed their true colors and were unbelievably supportive. It was easy to see who cared enough to stick around. But it is not always black and white. People who I thought would be at my side drifted away for all sorts of reasons. I found that the main reason was because they might be awkward themselves and had a hard time being put in a situation they probably have never been in before, or if they have been in a similar situation it might not have had a good outcome. Some people don’t know how to react especially school friends. Adults usually can figure ways to show they care. StupidCancer.org is an outlet for feelings that might be hard to express. Send them a link or a bracelet because it is easier to joke about giving cancer the bird with the clever middle finger StupidCancer band then it is to feel sorry for you, since after all, you don’t need the baggage. StupidCancer.org is a way to express feelings the way we all need to.

Heather Buchan

Telling Friends and Family About Your Diagnosis

Jan 07

With a new diagnosis comes fear and uncertainty and a temptation toward denial.The last thing anyone wants to do when they are diagnosed is tell your story over and over to people but it has to be done. I remember waking up from my biopsy with tears, a painful incision and new hurdles I had to face. I gripped my parent’s hands and listened to the doctor talk. We had many questions about treatment and what like would be like for the next several months. Later that day, my younger brother and sister called me and asked how things were going. I had to go slowly with them because I felt I couldn’t just tell them over the phone how my life had changed. Instead, my family talked it through together in my hospital room when they came to visit. Together, we shared hugs and tears, but also hope. It was difficult to wait to discuss my illness with my siblings. On one hand, it lengthens the period of fear and dread. However, on the other hand, everyone can benefit from the comfort that closeness provides.

Telling friend and relatives inevitably involves phone calls. Based on your strength and stamina you may want to decide to do it all at once, as the words seem to flow more freely after the first call. With family, one of my parents would casually ask them how they were doing. Then they would tell them that we had some news, that wasn’t going to be easy to understand. They would always sound optimistic by first telling them that things were going to be all right and that I was doing well. Then they would put the phone on speaker phone so we both could talk. This way if one of us stumbled or got emotional, the other could take over. We would usually tell them that I would be fine and would hate losing my hair but looked forward to getting a sexy blonde wig. Then my mom would talk and try to arrange a time to see me. Next, we would tell them to make calls to family friends and people that we see less frequently. Everyone wants to hear from the patient directly and really appreciates even a short call. After the first few calls you fall into a pattern down and it isn’t wasn’t so draining. Friends are easier to communicate with given all of today’s social media connections. However, like family, some people you need to talk to on the phone. I knew I would need to tell my boyfriend who I had only started to date 2 weeks ago this way. I called him and told him that I was not doing well but my prognosis was good and to come visit me to talk more. I did the same for a few of my best friends. I told them to come in a group so I could explain my situation fewer times and answer questions so the story was less likely to change by word of mouth. Finally, I got messages and wall posts on Facebook from people reaching out and offering support. One of the great things about social media is that you can give lots of people updates even when you don’t feel like talking. When you do feel like you want to really connect with someone who is not close, try Skype video chatting. It’s the next best thing to being there.

Heather Buchan

Aug 09

Planning for #omg2013 has begun. You know what they say about what happens in Vegas… http://omgsummit.org (Taken with Instagram at Stupid Cancer)

Kenny Kane

Kenneth J. Kane has been coding since the age of 13 and began a career as a pharmacy technician at the age of 15. In addition to is pharmacology skill sets, he also has extensive experience in social media integration, digital platforms, graphic design, CRM design/implementation and corporate operations.

During his undergraduate at Farmingdale State College in the Fall of 2009, Kenneth was brought on as an intern through the organization’s Long Island chapter to help with local community organizing, event development and CRM integration. Over time, he became evermore increasingly involved assisting in local, regional and national events, fundraising, program development, grant writing, operations and human resources. In the Summer of 2010, he was hired full-time as VP, Operations and, in 2012, was promoted to EVP, Mission.

He currently oversees the organization’s information technology, content curation and social media strategy as well as e-commerce, mobile, volunteer management, fiscal oversight, internships and CRM/CMS management

A young adult personally affected by cancer through the diagnosis of family members and friends, Kenneth has spoken on behalf of the organization at numerous local and national events, such as the 2010 OMG! Cancer Summit, 140 Character Conference Long Island, Health2.0 NYC, The Center For Nonprofit Success Social Media Summit and the National Coalition of Oncology Nurse Navigators.