I Survived Cancer and Then Donated My Hair

About a year ago last summer, I decided to take a last-minute, cross-country road trip with one-year-old twins to see family prior to moving to South Korea. One morning I woke up in my childhood bedroom in Lafayette, Louisiana and decided it was the day I wanted to fulfill a long-term goal I had held since I shaved my head during chemo almost exactly three years prior: I donated my hair. I called around to my friends and asked for a salon recommendation since it had been several years since I lived in Lafayette. A few people recommended Morgan at Spa Mizan, and she miraculously had a cancellation and could take me that day. What I didn’t know is that she was also a young adult survivor of cervical cancer, and was very pumped to help me achieve this dream. She took her role very seriously, and carefully read through the hair donation requirements before measuring out my hair. She ultimately decided to maximize the length of my hair donation by dividing my thick locks into two pig tails. Fortunately, my childhood best friend and occasional guest blogger, Allison, came with me to document the event and you can see the results here. The three of us had all been affected by cancer very directly in different ways, and I was really honored to be able to share this experience with them.

Although I chose the day spontaneously, I took the decision to donate my hair very seriously. One of the first things I did was choose an organization to donate my hair through. A lot of people have heard of the organization, Locks of Love, which donates hair systems to children with long-term hair loss, primarily benefiting children with alopecia areata. However, several organizations are out there that accept hair donations. A great list is available here. All are great organizations, so if you are interested in donating your hair, my advice would be to research their missions and requirements to decide which one fits your needs best.

I ultimately decided to donate through Pantene’s Beautiful Lengths program for a few reasons. The main reason is because they work with American Cancer Society specifically to provide free wigs to women with cancer. Many of my friends and their loved ones had received hair replacements through this program. I really felt called to support them since I had witnessed the benefit of their program firsthand, and I really wanted my donation to benefit a cancer fighter. My other reason for supporting the program was much more practical. The Beautiful Lengths program only requires an 8-inch pony tail, while most other hair donation charities require 10 or 12 inch pony tails for donation. Since I am a pixie girl at heart and my children love to tug at my hair, I knew my patience for growing out my hair was going to be minimal – so planned accordingly. To my surprise, I ended up with two 10-inch pig tails to donate, but ultimately decided to donate through Pantene’s Beautiful Lengths program because of their service to the cancer community.

Once you choose the program you want to donate through, it is important that you follow their recommendations for taking care of your hair while you grow it out. According to a rather outdated New York Times article, as much as 80 percent of hair donations to Locks of Love in 2007 were unusable because people didn’t follow their requirements. If you really want your hair donation to go toward someone in need, it requires a long-term commitment. You generally have to avoid coloring your hair during the time it takes to grow it out (in my case 2.5 years) and maintain it with regular trims and conditioning. Pantene provides a great resource on how to prepare your hair for donation here. If you are interested in hair donation, please do your research and make sure you are willing to make that commitment. If you aren’t able to participate because your hair is color-treated or for another reason, there are many ways you can participate, such as making a monetary donation, or volunteering to create awareness for the program by recruiting participating salons and/or hosting hair donation events.

I really loved growing out my hair and felt elated by returning to my pre-cancer, pixie look. In the process I hope I was able to create some awareness, both for hair donation and adolescent and young adult cancer issues. I hope this blog post will provide some great resources for anyone considering hair donation in the future!

 

 

 

 

 

 

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Two important reasons…

So a lot has happened in the past 20 months or so since my last update. While I always assume that the people reading this are my friends and family and know what is going on in my life, it came to my attention that when someone who blogs about cancer suddenly stops blogging it can be a bit concerning to any readers that aren’t “in the know.” I am very happy to say that I have two very important reasons why I haven’t been updating.

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The announcement for our “two important reasons.”

My husband and I welcomed twin baby boys, Owen & Nathaniel, to the world on April 17, 2014, almost two years to the day of the start of my cancer journey. I found out I was pregnant in August 2013 and that I was expecting twins on October 1, 2013 when I was 10 weeks along. We actually caught the surprise on camera. My sister, Sarah, came with me for my first ultrasound and filmed it for my husband who was on Army field duty that week, so you can watch that beautiful surprise here.

Initially I wasn’t able to blog because I very quickly started exhibiting symptoms of hyperemesis gravidarum (HG), or “that thing Kate Middleton gets when she’s pregnant,” as I usually tell people. Basically I had very severe all-day morning sickness and lost a lot of weight in my first trimester and had to go to the ER a couple of times. It’s more common in multiples pregnancies, however, I don’t want to scare any expecting twin+ moms out there, the odds are still in your favor that you will not have to struggle with it (I can’t find the figure, but I believe I read it occurs in 6 percent of multiples pregnancies vs. 1 percent of singleton pregnancies.)

To help manage the symptoms, I actually took Zofran for a few days, which is a drug most often given to cancer patients undergoing chemotherapy. For whatever reason, possibly because of my history on the drug in the past, Zofran didn’t work well for me. I have heard you can develop tolerance to it over time, so it becomes less effective. However, my OB suggested I take Unisom (normally an over-the-counter sleep aid) along with vitamin B12 at night before bed, which worked wonders (as long as I remembered to take it.)

I preface this by saying that I am not giving out medical advice here, but if you are a cancer fighter, expecting mom or anyone else struggling with nausea, you may want to ask your doctor if Unisom might be a good option for you. I loved that I could run to the drug store and get it over the counter without a prescription and that it was pretty affordable. Also, if you are an expecting mother please be sure to check the labels, the Unisom that has doccylamine succinate as the active ingredient is pregnancy friendly whereas the Unisom with diphenhydramine is not rated safe for the first trimester of pregnancy. I will also say that since this is a normally used as a sleep aid, you will almost certainly be groggy. I was able to reduce my dose to half a pill at night before bed and was functional the next morning with minimal or no nausea. Medicine affects everyone differently though, so you might feel up to driving/going to work/etc. on this medicine, you might not. Just see how it makes you feel and keep communicating with your doctor about what is or isn’t working for you.

Once we found something that helped my HG symptoms, my pregnancy went remarkably well. I delivered at 38 ½ weeks by scheduled C-section due to one of the babies being breached, but never had to be hospitalized or put on bed rest before that. I did have to start working from home and limit my driving and errands about six weeks before giving birth, which is around the time I was measuring the equivalent of a woman pregnant with a singleton at 40 weeks, which is normally full-term and when women pregnant with twins are more likely to go into labor early (which really makes sense.) I also had to go to the doctor starting at that time for twice a week monitoring to make sure I wasn’t going into pre-term labor.

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My belly at 38 weeks. I was measuring somewhere around 44 weeks pregnant at this point.

So, long story short, Owen was born at 12:43 p.m. on April 17, 2014 (Holy Thursday) weighing 7 lbs 7 oz and Nathaniel was born at 12:44 p.m. at 6 lbs 7 oz and we were able to bring them home on April 20, which happened to be Easter Sunday and also my two-year anniversary of the trip to the ER with chest pain that marked the beginning of my cancer journey. No words exist to described how incredibly blessed I feel to change that day forever in my mind from the anniversary of one of the scariest moments in my life, to the day I brought home my baby boys. Having two beautiful, healthy and happy baby boys so soon after cancer treatment was a blessing and privilege I never thought would be mine. I really thank God for all of his blessings in our lives, and I thank everyone for their prayers and support over the rollercoaster of the past few years.

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Owen (left) & Nathaniel (right) at the hospital.

That day was exactly 10 months ago, and Owen & Nathaniel are now crawling, standing, giggling and otherwise normal kids. They already say “Da Da” like its going out of style, and I hear the occasional “Ma Ma.” I expect they will be walking in the next few weeks, but only time will tell. Since that point, I went back to work for about five months and then became a stay-at-home-mom in January, when I left work to relocate with my family to Virginia for my husband’s military career. As I settle into this new life, I am not exactly sure what the future will hold for this blog, but I do have a few more posts up my sleeve related to pregnancy and parenting as a cancer survivor (and otherwise), so stay tuned for more entries!

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I don’t think we are in Texas, anymore!

Milestones: My Half-Marathon Experience

Thursday, July 11 was a major milestone on my cancer journey: I had my chemo port out after more than a year. When I would talk to people about it leading up to the procedure, they were so excited because the port is often considered the symbolic end of the cancer journey (though its never really over.)  I was surprised at their reaction at first because it didn’t seem real for me and I had trouble sharing their excitement. The port extraction just felt like the last thing on a long to-do list related to cancer. A major part of my lack of enthusiasm was the anxiety of having another procedure done.

My oncologist actually suggested I get it taken out in March, but I was feeling really overwhelmed at the time. I really wanted to get back to a “normal” routine with work, fitness, life, (and be in the millions of weddings I was in this year without having a open wound going on in the photographs) and surgery was just not a part of that equation for me… even if it was for a positive reason! I was also just generally adverse to being cut open in any way… however, I am happy to report that having a foreign object taken out of your body is apparently much easier than having it put in (at least in my case it was!) I was on significantly less sedation for the procedure itself, so I didn’t get sick afterward and I was much less sore. I still spent the next four days laying on my couch and groggily watching TV, but I think that had a lot to do with the cold I developed the day before surgery than the procedure itself. I am also excited because I am only restricted from swimming and working out for a week as opposed to several months like last year. The incision itself is still sore and itchy, but life is otherwise pretty much back to normal.

One of the reasons I’ve been so slow  to blog is because I’ve been out there “living it” as the young adult cancer community loves to say. My last post updated through Memorial Day weekend… and June was no less busy and exciting than April & May! I absolutely love the summer time and I wasn’t able to enjoy it at all last year. Surgeries + chemo + radiation = a lot of water & sunlight restrictions… which pretty much limits most fun activities in Texas.

June started off with a  bang as I hopped onto a plane to San Diego with my team-in-training teammates for the Rock N’ Roll San Diego half-marathon. As I have mentioned on here a few times, my sister Theresa, also signed up for the race with TNT and met me there. Neither one of us had a lot of time to research the area, but we both quickly fell in love with San Diego. The weather is pretty much perfect year round, the food is superb and there were plenty of historic sites … including a couple of ghost tours (which I am pretty much obsessed with!)

My friend from childhood, Megan, also did the race with me. When we got in on Friday, we all met up at the expo and one of the things we did was stop at the Delete Blood Cancer booth who were there to register bone marrow donors. I’m permanently deferred from donation due to my lymphoma diagnosis, however, both Megan and Theresa became my heroes by registering. I tweeted this pic and was retweeted by Delete Blood cancer, it was pretty bad ass.

Delete Blood Cancer

The next day we took the opportunity to visit the San Diego Zoo and met up with my dad’s cousins, who we hadn’t seen in about 13 years. Pretty much the only thing I knew about San Diego was the zoo, so we just had to go there… much to my coach’s dismay since we were supposed to stay off our feet as much as possible before the race… oh well! When in San Diego… go see the zoo! It was pretty awesome. My favorite part was seeing the Galapagos sea turtles! We were close enough to pet them but they were having none of that. I was amazed not only by their size, but because some of them had been alive since before Abraham Lincoln was president!

sea turtles

That evening we went to the Inspiration Dinner for Team In Training which was a really incredible and unique experience. As you walk into the banquet room, all the coaches and mentors from around the country line up and cheer everyone on. Many people reached out to me and patted me on the back or gave me high fives, some because they knew I was a survivor and others just because! One of the proudest moments for me is when they asked people to stand up if they were survivors, and to stay standing if we were also participating in the race, and to keep standing if we were participating and also an honored hero. I was one of maybe only five or six others who stayed standing the whole time in a room of about 1,500 people. It was very surreal.

One of the speaker’s has a father who passed away from blood cancer and a son who is here today due to the advancements in cures funded by the Leukemia & Lymphoma Society and TNT. The whole evening really shot home to me why we do the things we do. Team In Training folks had raised an outstanding $4.5 million for this event alone! I was so proud to be a part of that. There was also a nice bonus surprise because it was at the Inspiration Dinner that the race director announced that the Rock N’ Roll series was introducing a bonus medal for charity runners… which meant we got one but TWO medals if we finished the race the next day instead of just one. I’m all about the bling so I was super stoked!

Spoiler alert: I finished the race and this is what my rockin’ medals look like!

It was important to remember the reasons we signed up for TNT the next morning because we woke up dark and early at around 4:30 a.m. to catch the buses with our respective chapters. However, we were all so caught up in the moment and charged for our race, I don’t think we cared a hole lot about the wake up time. When we got to our corrals (many hours later) I felt the need to take a lot of obnoxious photographs. The race happened to take place on National Cancer Survivor’s Day on June 2, so I also felt the need to post all these photos across various social media declaring how bad ass I was for doing a half-marathon and being a cancer survivor (I am not egotistical at all…)

They generally are some version of this:

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Megan & Theresa were much cuter/calmer than me.

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There were also a ton of people there, about 30,000.

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You can get a vague impression of the huge crowd from this photo.

The race itself went surprisingly well. Theresa & I stayed together almost the entire time. I’m a walker and Theresa generously decided to walk alongside me so we could have the experience together. However, there were enough epic downhill stretches that we decided to run a few (I’m more willing to run if gravity is on my side doing most of the work!) The weather was absolutely wonderful and the temperature was in the 70’s the whole way. The San Diego folks had chairs set up along the race cheering everyone on whilst drinking at 7 a.m. It actually made me feel like I was back home in Louisiana for a Mardi Gras parade. Some folks even had signs that signs that said, “Worst parade ever.” At this point I was focused on staying ahead of the time limit, so there was no time to take photos for documentation purposes. Toward the end of the race I was feeling more confident that I would easily make it across the finish line with time to spare so I stopped to take a few photos of the course.

Theresa, Megan and I all fundraised as part of Team Jackie in honor of our teammate’s sister Jackie Sharp who passed away last year from leukemia. It was very motivating to see this sign toward the end of the race.

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I’m not sure why I felt the need to take a picture of the 12 mile marker and no others, but I did! This was at the end of a pretty long downhill stretch and Theresa & I were both a little woozy.

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In the end, we both made it across the finish line RUNNING and holding hands at 3:48:03. The folks taking photos didn’t snap a great shot of this at all, but it was pretty amazing. I technically beat Theresa by one second, and I have a feeling this is an achievement I will never accomplish again!

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I also thought it’d be cute to bite my medal like an olympian… it wasn’t.

All jokes aside, I cannot express enough how important it was for me to accomplish this goal. Being able to finish a half-marathon less than one year out of treatment, on National Cancer Survivor’s Day, as a way to raise awareness and research funds in honor of people like Grant, Jeannie, Brent, Jackie, Jay, Sam and all those who have fought cancer … was incredibly symbolic and an emotional experience for me.  The whole race really just made me feel like, “I’m going to be okay.” I became teary on more than one occasion passing signs with photos of people the LLS had helped using the funds TNT raises. A survivor herself was near the finish line holding a sign that said “I’m here because of you!”

I am so happy I chose to do Team In Training and I recommend it to anyone who is looking for a way to train for an endurance events. TNT is designed to be accessible to people of all fitness levels. You can choose to walk, run, tri, hike or bike for a variety of distances.  If you are looking for a way to support TNT, I am very proud to announce that my friend from grad school, Becca, has chosen to join TNT and train in my honor for the Brewer’s Mini-Marathon in Milwaukee this September. You can follow her progress and learn more about her training at http://pages.teamintraining.org/wi/brewmara13/wendler.

In my next entry, I will update you on some of the others shenanigans I’ve been up to!

Life Update: April & May

So I am long overdue for an update and I apologize. For most of 2012 I was pretty bound to the Austin-area due to my illness and I’m apparently making up for ALL of that this year over the span of 3-4 months! I will try to update my blog more frequently.

I left off right around my birthday.

On April 23 I turned 26. I will never freak out about getting older again because I know how blessed I am to keep having these things called birthdays! Bring on the wrinkles (though not too many please!)

I celebrated 26 in style with my husband and then left for Las Vegas 2 days later for the OMG! Stupid Cancer Summit for young adult cancer survivors. I had a really amazing time and got to meet up with old friends as well as new. I LOVED visiting with a family friend who took me out for some amazing Vietnamese food and passed along plenty of hard-earned wisdom about racing. An old friend from my public relations program at LSU also went out of her way to come visit for a few minutes between conference sessions and it felt like we had seen each other yesterday. I feel so blessed that fate, magic and Facebook seem to bring people either into or back into my life regularly.

I also got the chance to hang out with my “cancer friends” KelseySam and Victoria, all of whom I had met through friends of friends and had mainly interacted with via the interwebz. Victoria discussed the term “survivor siblings” in her blog, and that’s exactly how it felt to me too… like we were all relatives meeting up at a family reunion after a long separation. Except instead of exchanging the names of grandparents to determine where you fall on the family tree… you exchange diagnoses. It might sound weird to other folks, but it actually was really cool hanging out with people who didn’t skip a beat when you start discussing your “war stories” and showing off your “battles scars.” There really weren’t any awkward silences (and believe me we got into some interesting territory in the ‘Nothing is Taboo’ session) or obligatory apologies or exclaims of “Oh… but you’re so young!” We were all young and we all had cancer and it was just a fact of life and treated as such.

The conference session topics widely ranged and I’ll try to discuss these topics more thoroughly in their own entries. Some topics available were: living with survivor’s guilt, long term effects of cancer treatment, care for the caregiver, healthy diet and life styles during/after cancer, sex and cancer, expressive writing, new developments in cancer therapies, and many more. One session I attended was the First Descents Adventure Race where my new friend/roommate for the weekend– Meredith– snapped this gem of me crab crawling for one of the challenges.

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Totally hot, right?

I was able to sight see a tad bit while in Vegas, taking in Beatles Love by Cirque Du Soleil, checking out the Bellagio fountain show and visiting the cheesy renowned Fremont Street area.

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A trip to Vegas isn’t complete until you take some photos with washed up Elvis impersonators.

All the cancer “hoorah! we’re still alive!” juju from the conference got into us and we randomly decided to zip line across a couple blocks of Fremont Street. As someone who developed a fear of heights and roller coasters as an adult, this was a big step for me. However,  it was a ton of fun, only lasted a few seconds and I had a blast!

 

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Sam & me preparing to zip line over Fremont Street.

Overall, I learned a lot, had some fun and saw just enough of Vegas to want to go back for more.

I returned to Texas and stayed pretty busy over the next few weeks. I went on a ghost tour of Austin for a late birthday celebration with friends and attended the Austin Color Run. It was my first official 5K race (though I had done a 10-miler a few weeks before) and I highly recommend it if one is coming to your area. The experience was even more amazing because my good friend from high school, Michelle, made the trek from Louisiana to Austin for the race to celebrate her graduation. She also brought her sister and we had a blast!

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Michelle, her sister Christina, me and Britni drenched in color at the Color Run on May 4.

The following Saturday, May 11, was really monumental for me. Somehow by fate, the longest run of the season with Team In Training happened to be the same day as my “cancerversary” — the anniversary of my cancer diagnosis. So early that morning, I got up bright eyed and bushy tailed at 5:30 a.m. and made the 20-mile trek to Austin from my northern suburb. With the support of my walking mentor, Casey, and walking coach, Anne, and various teammates, I finished the 14 miles– the most mileage I had ever done in one time before or since. It got a little shaky there at certain parts, but the support system I had in place thanks to Team In Training really helped get me through. When I reached the 13.1 mile half-marathon mark, Casey started playing the Olympic theme song. When that finished, she started playing the LSU pre-game and periodically kept playing it throughout that last mile (she knows well what will add pep to my step.) Despite the challenges (or because of them) I felt an incredible sense a peace throughout my walk and really felt so proud that I was able to accomplish such a feat less than a year out of treatment. It was all the more meaningful that it took place on my cancerversary. I recommend Team-In- Training to anyone, especially cancer survivors. So please find a chapter near you and get started!

The next few weeks were also eventful and included a visit to Louisiana for my friend, Kelli’s, wedding and my sister’s bridal shower. The wedding was amazing and included a last minute improvised fish hook dance that my friend Parker & I concocted for our bridal party introduction. The dance actually broke the time-space continuum as evidenced by this picture.

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Epic, right?

The next day we threw my sister a royal themed bridal “tea” and required everyone to wear hats because we are really demanding awesome like that. My hat was obviously the largest one there, a fact of which I am very proud.

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I take party themes very seriously.

That wraps up May. Please stay tuned for my next entry and I will discuss my first half-marathon, the Rock N’ Roll San Diego!

 

 

The Sam Long Guide To Fundraising

As I mentioned in my last blog entry, my cancer friend Sam Long agreed to write a fundraising guide for me to share with you guys. Many cancer fighters/survivors and their loved ones channel their energy into things like Light the Night, Team-In-Training, Race for the Cure, Stupid Cancer players club and an untold number of other cancer related fundraising/awareness events. Sam is particularly great at it. She was already involved in the Leukemia & Lymphoma Society before she was diagnosed, and since her diagnosis has become even more successful at fundraising. I forgot what the final numbers were on her fundraiser (I’m sure she will comment to correct me) but it was in the multiple tens of thousands of dollars. Being relatively knew to the fundraising world myself, I asked her to do this blog post for my own benefit as well as your’s!

I really wish I had asked her to do this a LONG time ago. Some of these tips I had to stumble across the hard way this season with Team-In-Training, and others I hadn’t even considered yet.

So here it is: The Sam Long Guide to Fundraising

1. Consider things your friends and family already do.

Are they big shoppers? Do they gamble? Do they like sports? Are they bar-goers? Are they interested in the arts or being creative?
Many of the things your core group already does can be turned into a successful fundraiser.

Hosting events at local restaurants or bars is a great way to get people to do something they normally would (such as go out to dinner o out for drinks) but for a good cause. Contact your local favorites – see if they’ll donate a percentage of sales. Many large restaurant chains will offer dine-to-donate nights. Bars and restaurants often have open bar or catered packages that can be slightly marked up to raise funds as well. This is one way to host a Beef and Beer event!

Professional sports teams often give away memorabilia and sell discounted group tickets. If fans are already gathering at the stadium, why not raise money? Make it a tailgate too and double your fun!

Appeal to those who can’t resist a gamble by raffling off gift baskets or setting up a bus trip to the casinos. Many companies will donate items if you ask in writing and provide the organization’s tax ID number.

There are lots of great events out there…you just need to find something that appeals to your target audience and promote it.

2. Use social media marketing to your advantage.

Twenty years ago these terms would have made as much sense as the Dewey decimal system…but today they’re solid gold.

Tweet, retweet, blog, post, repost, Youtube, IM, share, message, text, voicemail, Facebook, inbox, Instagram, tag, MySpace, facetime, Gchat, Skype, email, video message, and just plain on talk about it. Tell everyone you know. Be annoying. Sure people may block you or avoid your incessant contact but you’re doing it for the right reasons. Just remember…stalking is stalking, even when a computer is involved.

Once you have your goal, tell people about it. Share your mission. Invite people to events. Kindly request they donate money or volunteer time. Understand that not all events are for all people and that some people may not have the means to be charitable even if they’d like to be. Some people may prefer to volunteer rather to raise money or donate. Let people know there is more than one way to help.

Here are some helpful links:
http://allfacebook.com/how-can-nonprofits-use-facebook-to-motivate-donors_b111745#.US5xwXexFLo.gmail
http://news.cnet.com/8301-1023_3-57543894-93/donate-to-charities-using-facebook-gifts/
http://www.guardian.co.uk/voluntary-sector-network/2013/feb/28/charities-social-media
http://mashable.com/2009/08/21/charity-social-media/
http://www.guardian.co.uk/voluntary-sector-network/2012/jan/30/charities-use-social-networks-engagement

3. Ask.

It’s a simple concept, but hard to do.

Ask your friends and family to join you in the cause. Make sure you share your reasons for fundraising and why it’s so important to you.
Ask companies for donations or gift cards/merchandise to use as fundraising incentives. Use donated items for raffles to raise money or prizes for joining the team/raising the most. You’d be surprised how many organizations are willing to contribute. Check local grocery stores and chain restaurants, small businesses, and online retailers.

Ask people for their support. So many people have a talent or skill that can help your mission. And you wouldn’t believe how generous people can be with their time and energy if they are approached the right way.

There is the old saying, “It doesn’t hurt to ask.” It may be uncomfortable, but it’s not going to kill you. If someone says no, take note of that and avoid that potential uncomfortable situation the next time.

4. Show you care.

Don’t get involved with an organization or a fundraiser if you don’t really care about the cause. It’s easy to jump on a bandwagon but do you expect others to blindly follow your lead if they can tell you’re not invested?

Take the time to read up on the mission of your organization. Volunteer at a local chapter. Share knowledge, tips, patient services, and other material that is available.

Life is what you make of it; make the most of it and make it matter.

Here are some more sites with helpful tips and information on fundraising:

Ideas:
http://givingjoe.hubpages.com/hub/CharityFundraisingIdeas
http://ctb.ku.edu/en/tablecontents/sub_section_main_1340.aspx

Organizing events:
http://www.ehow.com/how_7418969_organize-beef-beer-fundraiser.html
http://www.casinonightfundraisers.com/how-to-run-a-casino-night-fundraiser.html

In-kind donation request letter template:
http://office.microsoft.com/en-us/templates/request-for-contribution-or-in-kind-donation-TC001018579.aspx

Hodgkins Schmodgkin’s

 

Something exciting happened to me a few weeks ago that I don’t think I have mentioned on here yet. Seton Healthcare, one of the supporters of the new Young and Strong Fight Club group here in Austin , offered a scholarship that covered the airfare to and from the OMG Stupid Cancer Summit in Las Vegas. It happens to be April 25-28. April 20 is actually the one-year anniversary of my first ER visit that led to my cancer diagnosis. April 23rd is my 26th birthday. April 24th is the first anniversary of my first biopsy. So what better way to mark these occasions than by attending a conference for young adult cancer survivors in Las Vegas? So I applied for the scholarship and it turns out, I got it! A friend of mine offered to let me stay in her room for free, and Stupid Cancer generously gave me a discount on my registration, so I won’t be out of pocket for many expenses at all. It really feels like fate and I can’t believe how blessed I am!

Not long after I registered, one of Stupid Cancer‘s vice presidents emailed me about a scholarship specifically for Hodgkin’s survivors. I was honestly shocked. Since there’s not a ton of people that get Hodgkin’s compared to other cancers, and the fact we have a decently high survival rate, I don’t see a lot of programs specifically geared towards us. Since I already had my expenses covered, I thought immediately of my friend Sam.

April 25th is also an important day for Sam: the first anniversary of the day she became cancer free. Sam is another one of those awesome “cancer” friends that I haven’t met in person but already feel like we’re kindred spirits. She’s actually a survivor of two forms of cancer: Hodgkin’s (like me) and a neuroendocrine tumor of the pancreas. Her cousin is a fellow Army wife/Austinite and introduced us online. I messaged Sam on Facebook and the rest is history. The following is Sam’s application for the scholarship. She unfortunately did not get it, HOWEVER, a friend of her’s generously donated a $600 travel reimbursement to her because she was no longer able to make it to the conference herself. Sam is still looking for a roommate to offset some of her hotel costs, so if you know anyone who is planning to attend and needs a roommate, please comment and let me know!

On the horizon: Sam also wrote another blog entry for me about her amazing fundraising skills. You can visit her amazing team’s fundraising page here. Sam blogs at http://hodgkinsschmodgkinsinablogkins.tumblr.com/.

Sam Long

Sam and her cat

What is your survivorship story?

My name is Samantha Lee Long. I am a survivor.

On Monday, July 11, 2011, I found a lump on my neck.  Because I couldn’t get an appointment with my doctor until the following week, it was all I could think about.  I had planned to write a paper for my doctorate program that night, but instead I Googled everything I could about lumps (from fat tumors to thyroid issues to cancer).  I unofficially gave myself a week to live.

Unable to wait for my appointment, I went to the local emergency room the next day.  They assured me it was probably nothing and told me to follow up with my primary.  After two ineffective rounds of antibiotics, my doctor referred me to an ear, nose, and throat specialist who put me on yet another antibiotic.  The persistent lump led the ENT to say, “I’d hate to scar you for life, but if you were my daughter, I’d cut it out of you to see what it is.”  On August 30th I had a biopsy of the lymph node.

On Thursday, September 8, 2011, I was diagnosed with Hodgkin’s Lymphoma.

I should have been diagnosed on September 7th, but instead, the ENT furrowed his brow while examining the report and said, “Hmm, it says no abnormal cells, but I could have sworn the oncologist said Hodgkin’s Lymphoma.  I’ll have to get back to you tomorrow.”  (Gee, thanks.) The next day I got the call saying I had cancer, but at least it was “the good kind.”  (Did you know there was a good cancer?  Apparently, there is – Stage 3, Type A, Hodgkin’s Lymphoma.)

Part of me always knew it was cancer.  I even had an ill-received conversation with a friend, about how our fundraising for the Leukemia and Lymphoma Society (LLS) would be a cakewalk if the results came back cancerous. (Touché.) Our Light the Night team had been raising money since 2009 in honor of my friend’s mother, who was a Non-Hodgkin’s Lymphoma Survivor.  Now we were fundraising for me as well.

I knew I could handle what was to come, but I was still scared.  I wasn’t sure how to tell people I had cancer.  I didn’t want to keep having that conversation over and over.  My mother suggested I write a blog to chronicle my journey. Since she’s a smart lady and I’m an obedient daughter, I took her advice:http://hodgkinsschmodgkinsinablogkins.tumblr.com.  I believe that sharing everything in an informative but lighthearted manner helped people better understand and cope with what I was going through.  It certainly helped me.

I decided to make lemonade out of my cancer-flavored lemons.  I wasn’t going to let Hodgkin’s Lymphoma define me.  Instead, I used my illness to build awareness and to raise funds for LLS and other organizations.  Knowing I would lose my hair, I donated 8.5 inches to Children with Hair Loss in September 2011.  If I couldn’t have my hair, I thought someone else should.

In October, I got a port placed into my chest and began chemo.  Being in the department of oncology made me feel helpless and unlike myself.  I was nauseous, weak, and sick.

By November, I couldn’t handle the emotional trauma of my ongoing hair loss anymore so I hosted an event at a local bar.  My friends shaved my head on stage and we raised over $1,200 for LLS in just a few hours.  It was probably one of the scariest things I’ve ever done. (And this is coming from a girl who just experienced a bone marrow biopsy and a handful of chemo treatments).  Losing your hair is like losing a part of your identity.  Over the next year or so, I heard phrases like, “Woah, what’s with the hair?” or “What happened to you?” or “You look so pretty in your license picture with long hair!”  (Thanks, guys. Hodgkin’s Lymphoma; that’s what happened.)

I finished four chemotherapy treatments. They weren’t that bad on their own, but I wasn’t a fan of the allergic reaction to Velban that sent me to the ER, the agonizing bone and skin pain from the Neupogen shots, the forty pounds I gained from the steroids, or the comb-over I sported after losing my hair.  Cancer was no fun at all.

In December, my pet scan revealed that all signs of Hodgkin’s Lymphoma were gone in my neck and chest (Hooray!), but there was still a large mass in my abdomen.  After further testing, biopsies, and consultations, I learned that I had a second form of primary cancer (What?!) – a neuroendocrine tumor of the pancreas.  Although my Hodgkin’s was essentially gone, I still had to finish the rest of my chemo before getting the surgery required for removing the tumor – a Whipple Procedure.

Having two forms of cancer before 30 made me feel like I was getting a raw deal, but actually I was lucky.  Without the Hodgkin’s Lymphoma, we never would have found the neuroendocrine tumor.  And both cancers were essentially curable.  The doctors and nurses all told me it wouldn’t be easy, but that soon enough, I’d be cancer-free.  I could handle that.  After all, I was halfway there.

On March 13, 2012, I finished my 11th and final chemotherapy treatment (Rejoice!).  My Whipple Procedure was scheduled for April 25th.  They would remove part of my pancreas, part of my stomach, part of my duodenum, my gall bladder, and of course, the tumor.  The surgery meant a week in the hospital, a month of recovery and no work, a pretty gnarly scar, a lot of gastrointestinal issues, and a future of one-piece swim suits.

Two nights before surgery, I hosted a Dine-to-Donate event at a local Texas Roadhouse for my final meal before fasting.  I invited everyone and the restaurant donated 15% of sales back to LLS.  I called it, “Sam’s Last Supper.”  It was a huge success, raising hundreds of dollars.  Although preparing for a month in recovery and away from teaching had me panicked, I was elated to be surrounded by the support of so many.

After the Whipple, I was “cancer-free.”  I felt awful, but it was because my body was healing and adjusting to the gastrointestinal “rewiring.”  In June, my port was removed and I was on cloud nine.  Summer was here and I was on the mend. Cancer was behind me.

Then life threw me a major curveball.  In July 2012, follow-up testing revealed cancerous spots in my liver.  I was told my tumor had metastasized. I had recurring neuroendrocrine cancer.  I would always be in treatment.  I would never be cured.

Concerned, I asked the surgeon if this meant I would be a 70 year-old woman still going through chemo and surgeries.  He bluntly reassured me, “you won’t live to be 70.” (Whew, I was worried there.) The average prognosis was 5-10 years.  This was the first time that anyone told me that one of these cancers might kill me.

I was in a state of shock.  I didn’t know what to think.  Should I be planning an end game?  Taking on all the things I wanted to accomplish in life?  Did this mean I would never get married?  Never have children?  Never get to grow old?

On September 28, 2012, I had a liver resection.  Right before being released, the surgeon gave me some unexpected and amazing news.  The spots they removed were NOT cancerous.  It took a few days to sink in, but it meant I had been cancer-free since April.  Even though the first five months of being a survivor were tainted by thoughts that I wasn’t, it felt great to think I had almost half a year under my belt.

Now it’s been almost a year.

To me, being a survivor meant not letting cancer stop me from doing anything.  I continued teaching special education full time.  I continued my doctorate program.  I tutored students, spent time with family and friends, and even created jewelry to raise money for the Leukemia and Lymphoma Society.  Fundraising became my diehard mission.  Since my Hodgkin’s Lymphoma diagnosis, I helped my Light the Night Team raise almost $30,000 for the Leukemia and Lymphoma Society.

To commemorate the one-year diagnosis mark, I made a video called Sam’s Fight and shared it with the world via YouTube: www.bit.ly/watchsamsfight.  In the video, I shared pictures and an abridged version of my story.  I hate thinking of myself as a “cancer survivor.”  I never wanted to think of myself as a “fighter” either.  But I am both.  More importantly, I am still a daughter, a teacher, a girlfriend, a fundraising tycoon, a doctoral student, a cat owner, a sister, and a friend.  I am still Samantha Lee Long.

Why do you want to attend the OMG Cancer Summit?

Surviving two forms of cancer before my 30th birthday puts me in a very different category than most patients and survivors I have met along my journey.  The 6th Annual OMG! Cancer Summit for Young Adults would be an incredible opportunity for me to network with other young survivors and learn about the latest oncology developments.  Even though I’ve been cancer free for almost a year – exactly one year on April 25, 2013, the first day of the summit – I need to remember how important it is to keep a support system in place and to keep myself informed about innovations in cancer treatment and research.  I think that the OMG! Cancer Summit will give me the chance to meet people who are just like me and to expand my knowledge on cancer related topics.

It is important that young people have support during their cancer journey.  During mine, I met another cancer survivor that I could talk to and commiserate with.  Although she had a very different form of cancer and different ups and downs, it was great to have someone who would tell me, “I know exactly how you feel.”  I also met many people through blogs and groups online.  In fact, it was one of my online “cancer friends” who told me about the OMG! Cancer Summit.  These friends were a great support system.  Reading their stories helped me to better cope with my own.

Two of my acquaintances were diagnosed with the exact same form of cancer in 2012.  (Crazy, huh?)  I wanted to mentor these two young ladies.  From hair-loss grief counseling to what to expect when you’re expecting (cancer), I tried to be a lifeline.  I was a text message away with anything and everything I could do to help.  I wish there was an OMG! Cancer Summit every weekend so the newly diagnosed could meet other people who have been in the same situation.  Not everyone is fortunate enough to find others that understand what they are going through.  A summit to bring people together is an opportunity like no other.

Unfortunately, a teacher’s salary doesn’t allow for trips across the country, no matter how life altering they may be.  For this reason, I hope to win a scholarship to attend the OMG! Cancer Summit.  It would mean the world to me to meet other survivors and be part of something much bigger than myself.  It would also be the perfect way to celebrate the first of many cancer-free years in my survivorship story!

Fertility Forum follow-up

As I mentioned in a post earlier this month, I had the opportunity to speak about my oncology fertility experience at a Fertility Forum hosted by Stupid Cancer and the Leukemia & Lymphoma Society- Louisiana & Mississippi Chapter in New Orleans on March 7. I happened to be in New Orleans because I was serving as a bridesmaid in my friend Meagan’s wedding, and she graciously told me I could skip the rehearsal in order to speak at the event.

meagan 2

The gorgeous bride, Meagan! Ignore my bra strap hanging out please … it was corrected with some fashion tape a few minutes after this was taken.

At the fertility forum, I got to see my fellow Scotch Guard lassie and Hodgkin’s survivor Dr. Meg, who still lives in Louisiana and got me involved in the Fertility Forum.

Megan Lipe

Lassies reunite in New Orleans!

My good friend, Mary Anne, also came to (silently) cheer me on at the forum and rocked her Geaux Team Laura t-shirt. I only got to see her for about 5 seconds since I had to dash off right after my speech to make it to Meagan’s rehearsal dinner, but it was sooo awesome to feel the love and support all around me while I gave my speech.

Mary Anne

A cheering squad was definitely appreciated, since discussing my reproductive organs in front of 50 people wasn’t intimidating at all or anything. I actually got to watch myself speak since LLS very awesomely posted the Ferility Forum to YouTube. I didn’t sound quite as awful nervous as I thought, but definitely need to work on my “umm’s” and “like’s” a bit. I also like to gesture…. “like” a lot 😉

I will have some more chances to work on my delivery style, however. I will  be part of young adult survivor panels at two upcoming conferences in Texas. I will be speaking at Seton Healthcare’s “Care Beyond Cancer” Summit for Young Adult Cancer Survivors in Austin on April 6. This summit is FREE and more information is available online. I will also be participating in a panel at the LLS’s Texas Forum on Blood Cancers in San Antonio on April 13, as well as the Keep Cancer Lame events the night before.

I admit that I had to duck out early and I haven’t had a chance to watch all three parts of the forum yet on Youtube…. however, what I have been able to watch has been extremely informative and I would recommend these videos to any oncology health professionals, caregivers, cancer survivors/fighters out there with questions about onco-fertility and preservation options.

Some of the panelists were from the LSU Health Science Centers, and it sounds like they are really striving to make increased accessible in the area a priority. I was very honored to be involved in the forum and am very excited to see how their initiative develops over the next few years.

I’ve shared the links to the videos below:

Part 1:    http://youtu.be/tZV1vvs9Yuk      (You can see/hear me speak in part 1 from about min 4 to min 20)

Part 2:  http://youtu.be/xbKPZ6R4DMg

Part 3:  http://youtu.be/UxxGI7wiMl4