04/01/13 — Join us as we’re joined by Richard Tate (Vice President, Communications & Marketing for HopeLab) and Shwen Gwee (VP of Digital Health at Edelman, Founder of SXSH Social Health and the blog Med2.0) to discuss the evolutionary changes in digital health and the rise of the empowered patient movement. Survivor spotlight on author and radio host Joni Aldrich (Caregiving SOS)
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03/18/13 — Join us tonight as we discuss ObamaCare (aka The Affordable Care Act), and other healthcare policy issues with distinguished guests Wendell Potter (Author, “DEADLY SPIN: An Insurance Company Insider Speaks Out on How Corporate PR Is Killing Health Care and Deceiving Americans”) and Rick Ungar (Political pundit and Forbes.com contributor). Survivor spotlight on young adult colon cancer survivor Alma Hachey.
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03/11/13 — Join us tonight as we raise awareness for National Colorectal Cancer Awareness Month with celebrity young adult survivor Pat Spain from National Geographic’s acclaimed show, Beast Hunter. Joining Pat will be Andrew Spiegel (CEO, Colon Cancer Alliance) Cindy Borassi (Director of Communications, Colon Cancer Challenge Foundation) and Thomas Weber MD (Chair, National Colorectal Cancer Round Table)
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Figuring out how to talk about your cancer is a fraught issue. Once you’ve told the people important to you about your illness and prognosis, the cat is out of the bag. Word will spread, whether it’s because of word of mouth or running in to people when you’re bald. Then again, you may not be out and about frequently during treatment. Still, there’s Facebook. As people hear about your illness, some unexpected “old friends” may reach out to you – random people from high school and college. They may write stupid things as the healthy often don’t know what to say.
Still, I’m in favor of being open about your cancer. I realize this is not for everyone. But if you do decide to be open about it, you want to be careful not to make cancer your identity. Don’t let it define you. Keep your interests in perspective even if you can’t fully partake of them during treatment.
No, you won’t be able to do all the things you normally do while you’re ill and in treatment. If you’re a highly active person, you’re going to have to get used to slowing down. Think about trading hiking and hardcore cardio for gentle yoga or swimming. And make sure to clear any exercise with your doctors beforehand.
Even if you’re more sedentary, you may have to adjust your habits. For instance, I’m a big reader, but my cancer treatment made it very hard to focus on text, so I switched to audiobooks and podcasts. This worked well for me because I think that being read to is even better than reading on your own.
Maybe you’re more of a TV and movie person. Subscriptions to Netflix and HuluPlus are great source of portable entertainment, provided you can get Internet at the hospital and have a laptop. If not, you can watch at home while you convalesce between treatments. I found watching television series I’d missed, like The Sopranos and Arrested Development, was very entertaining and were welcome distractions.
If you’re a knitter, you may find it difficult to knit if you have neuropathy in your hands. This can manifest as a “pins and needles” feeling, burning sensations, or other uncomfortable sensations, making fine finger work difficult and painful. Browse craft books to find something that will fulfill your D.I.Y. desires in a way that’s gentler on your hands.
Journaling or blogging can be very cathartic, but as with knitting, neuropathy can make writing by hand or typing impossible. If you’re not camera shy and you have a laptop or smart phone with video capabilities (and who doesn’t these days?), you can create short videos to share with friends and family. There’s always iChat and Skype for live communication, but making videos allows you to do it on your own time when you’re feeling well enough to communicate. Make a vlog or video blog in lieu of a written blog, or simply video journal for yourself. Make your own podcasts.
The point is, trying to keep up with your habits even if that means modifying them or trying new things. Do things you can talk about with your friends. Ask for movie and podcast suggestions. Invite a friend to yoga with you. Your doctors will tell you to avoid crowds because of the immune suppression brought on by treatment that makes you more susceptible to germs. Which is all to say, you probably can’t go to the movies or a bar. So invite a friend or two over to watch a movie and share a bottle of wine when you’re feeling up to it. (And if the doctors allow you to have wine.) If you’re feeling really good, throw a small dance party in your home.
And, of course, you don’t have to downplay your cancer. Be honest with your friends and family as you see fit. I used to joke that I looked like Uncle Junior from The Sopranos with my glasses and bald head. I’d brag about my ghetto fabulous head wraps, and how I stole my look from the neighborhood girls in Brooklyn. I’d complain about how the three tubes of the temporary Broviac in my chest (that provided access to my central venous line for chemo and fluids) made it look like I had three extra nipples on my right breast.
When people asked me how I was doing, I wouldn’t pull my punches but I wouldn’t go in to great detail either. If it was a bad day, I might say (misquoting Lucinda Williams) “I feel like I got shot but didn’t fall down.” Not a full blow by blow of how much I threw up or that the chemo made my pee blood-red. I wouldn’t complain about my hemorrhoids or mouth sores. But if I was feeling particularly good, I might say I was up for dinner out and who’s buying?
That last question is, of course, an example of playing the Cancer Card. There is a time and place for this. Moderation is the key here as well. When you get that huge cell phone bill after you get out of the hospital for the first time, tell the customer service representative at Sprint or AT&T or Verizon or whoever your cell phone provider how young you are, that you’ve just been diagnosed with cancer and about all the calls you had to make and take to tell people about your illness as well as having to take care of the business of cancer by dealing with endless insurance company pre-authorizations and clearances. I played the Cancer Card in that exact situation and got my cell phone bill cut in half.
I also played the Cancer Card on a flight back from London six months after I’d completed treatment. My GI system had been considerably affected by the pelvic radiation I received and I needed an aisle seat to have easy access to the bathroom. Though I had requested and been assigned aisle seats for the outbound and return flights, on the way home I was reassigned to a middle seat.
I quietly pulled aside a flight attendant and explained that I had just finished cancer treatment and why I needed an aisle seat. She told me she’d see what she could do but to keep it on the down low. Coach was sold out but there was an aisle seat in Business Class, which she snuck me in to with the understanding that I wouldn’t say anything about the upgrade to the other passengers. My lips were sealed. Thanks, British Airways!
Don’t use the Cancer Card for frequent or petty things. You’ll become the boy or girl who cried cancer and lose your privileges. (I don’t mean some official will come and take your Cancer Card away, just that it will lose its power and you will start to piss people off.) Wield your power with wisdom.
Remember that cancer will change some things, but not everything. It’s unlikely to change your intrinsic personality, though your outlook on life will probably evolve. Be true to yourself. Be kind to yourself. Take a gentle approach. And remember that you are still you.
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!
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.
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!
Hopefully you will find a way to keep busy so your stay does’t seem so long!
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.
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.
03/04/13 — Join us tonight as we welcome Karen Shayne, Founder/Executive Director for the National Women’s Survivors Convention, a national effort to promote cancer survivorship in women. Joining Karen will be Kathy LaTour, breast cancer survivor, founder of Cure Media Group and Editor-In-Chief of CURE. Survivor spotlight on hodgkins lymphoma survivor Amber Vance.
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©2012 stupid cancer™, i[2]y™, omg! summit™, ungala™ and cancerpalooza™ are registered trademarks of stupid cancer, inc. (a.k.a. the i'm too young for this! cancer foundation), a registered 501(c)(3) nonprofit under federal tax guidelines. all rights reserved. | 
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