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!

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Anniv-ER-sary

Many dates stand out in my mind. April 20, 2012 is really what I identify as the beginning of my cancer journey. Yes… there were red flags that something was wrong leading up to this date, but in the early morning hours on April 20 last year I woke up with sharp chest pains that increased every time I inhaled. I wasn’t in excruciating pain, but my body had started doing enough odd things that I knew something was wrong. As I got into my car to drive to work that morning, I decided to call my parents more than 500 miles away in Kansas to discuss the pains with them. My parents are usually pretty good at telling me I’m being a hypochondriac and not to worry about whatever XYZ thing is wrong with me. However, this time they calmly informed me that going to work was a bad idea and I needed to go to the ER. I quickly made a right instead of a left at the intersection I drive through every morning, and followed their advice. I soon heard the words “you have a mass” for the first time. Those words lead to my first biopsy on April 24, 2012 which  led to a second biopsy, which eventually led to my diagnosis on May 11, 2012. Thinking about myself Before Cancer (BC) and After Cancer (AC) is very bizarre.

Before April 20 last year, the major struggles in my life revolved around my sense of purpose. I really didn’t know what I wanted to “do” with my life. I had a lot of interests pulling me in a lot of directions and I really struggled with making the wrong move. I was balancing graduate school and a full-time job, volunteering on the board for the LSU Austin Alumni Association and planning a vacation for when my husband would return home from deployment that summer.  I had just started doing crossfit twice a week in the mornings before work, and had been really impressed with how much strength I had left from doing personal training several months before. Like most of my adult life I remember always feeling extremely busy.

Looking at my life AC, a lot of the surface value things are still the same. I’m still working the same job, I have yet to return to grad school but have plans to finish up a few projects within the next few months, and I’m trying to amp up my fitness level. However, there are definitely some differences. My husband is now back and we’ve spent more time living under the same roof in the pass 11 months than we had during the first two years of our marriage combined. I feel more stability in my personal life now than I have since before going to college. I just achieved a major fitness goal by finishing my first race last weekend at the Austin 10/20. However,  I find that my motivations are so much different. While I’m still volunteering, I’m exclusively volunteering with cancer awareness related organizations/events. A year ago, I also never could have imagined that’d I’d be speaking in front of large  groups of healthcare professionals or with the media about my experience as a young adult cancer survivor. Not once but multiple times within a two month time frame. It’s all very surreal.

When I decided to start working out on the reg when my husband deployed in 2011, I did it because I wanted to lose weight without much thought to my long-term health at all. Now I am very aware of how fragile life can be, and plan to do everything I can to stay healthy– for my family and for my future. Although I’ve never been an extremely fit person, when I began team-in-training I was at the lowest fitness level of my life– with the exception of when I was actually going through treatment. Various steroid/hormone treatments I had due to cancer coupled with months of low activity led me to gain about 20 lbs. something I’m still struggling with. More frustrating was my overall lack of energy and strength. I’ve definitely seen a marked improvement in both, and the fact I was able to achieve personal records for both distance and speed time and again during this recovery period has been amazing. I am looking forward to achieving more and more personal records, including completing my first half-marathon in June with my sister Theresa and with my team-in-training. More importantly I have fundraised more in the past few months than I have in my entire life BC for a cause I’m so passionate about. I really never worry about what my purpose in life is anymore, because I’ve found it. Cancer advocacy and fundraising will always be a part of my life until there is a cure… and even after because cancer survivorship issues will probably surpass my lifespan.

I spent the weekend of my annivERsary doing a great combination of things both the AC and BC Laura loves. We met up with our church friend on Friday to watch 42, an amazing movie by the way. I also found an amazing photographer through Shoots for a Cure, a nonprofit that offers free photography services to cancer fighters/survivors and their families. Much to Rene’s dismay I love documenting our lives a couple times a year when possible. Luckily I have a sister that is a professional photographer so she helps out with that a lot. Unfortunately,  she lives in Wichita and despite her best efforts can’t always document our lives at my beck and call. However, I was so excited when I found Laura Reed with 2E Photography. Laura (not only sharing my first name) is also a cancer survivor, she is from Louisiana and does endurance events to benefit cancer awareness causes. Sound familiar? I really wanted to get photos done while the Texas bluebonnets were still blooming, and with the season quickly coming to a close, I was worried no one would be available. Luckily, Laura was able to work with our schedule. She met us in Georgetown bright and early on Saturday morning and we had so much fun (even Rene!) I’m sure I’ll be posting the finished products as soon as they are finished, so stay tuned!

After we wrapped up the photo shoot, we ran some errands and visited with a travel agent to discuss our possible (and long awaited) vacation we never got to take when Rene came home from deployment. Afterward we went to the LSU Austin crawfish boil to hang out with some fellow Texas Tigers and then met up with Team-In-Training for our mid-season party. Earlier today I volunteered with a group of TNTers and Rene to work at the Round Rock Express game, our local minor league baseball team, to raise money for Leukemia & Lymphoma Society. Despite some occasional stress, this weekend I spent a lot of time appreciating and thanking God for this amazing support system in my life. As rough as cancer was, I’ve met so many amazing people and strengthened so many relationships because of it.

Tomorrow I will be hosting a fundraiser at Raising Cane’s Chicken Fingers in honor of my 26th birthday (which will be the day after on Tuesday) and my annivERsary. Then I will be headed to Las Vegas for the OMG Stupid Cancer conference on Thursday to connect with other young adult cancer survivors and supporters!

In the mean time, please consider showing your support by making a donation to my team-in-training by visiting my fundraising page here. Every dollar brings us closer to finding a cure!

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!

Mile 11

As you might have read in previous posts, I’m currently training for a half-marathon with the Leukemia & Lymphoma Society’s Team-In-Training (TNT) program. I had originally planned to run the Nike Women’s Half-Marathon in Washington, D.C. on April 28. However, due to recovery setbacks I decided to adjust my goals to run the Rock N’ Roll Half-Marathon in San Diego on June 3. I went to my first TNT brainwashing session preview party last week, and invited my friend Megan to attend with me. Before the end of the night, the extremely passionate TNT coaches had her convinced to sign up as well! We’re now going to train and fund raise as a team. She’s been a faithful friend to me for more than a decade, and I’m so proud to have her join me on yet another adventure.

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Megan & I tailgating for the LSU vs. Oregon game at the 2011 Cowboy’s Classic in Dallas.

 

 

 

 

 

 

 

 

 

 

To read more about our team or to make a donation, please visit our TNT page here. You can also follow Megan’s blog at Projects for a New Year.

This topic actually brings me to another amazing friend of mine. One of the people who inspired me to do TNT was my good friend and fellow LSU alum, Amy Brittain, who ran the Philadelphia Half-Marathon and raised money to fight cancer through TNT this past November in my honor. She also generously agreed to do a guest blog post, and since Amy is actually an award winning journalist, I’m truly honored to have her contribute to The Lymphoma Letters!

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Visiting Amy in New York City in 2010

 

 

 

 

 

 

 

Mile 11

By Amy Brittain

I did the occasional 5K, but I wasn’t the type of lunatic, I used to
say, that would ever run any sort of crazy long distance.

As it turns out, I did just that.

When Laura called me with the news of her diagnosis, I struggled to
comprehend her words. We were supposed to be young, in the height of
our mid-20s, enjoying a carefree sort of life. Hearing her speak the
word “cancer” absolutely gutted me.

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Celebrating Amy’s 21st birthday in 2007.

I decided that I wanted to do something about it. Not that I could
take away any of her pain, or make her treatments any easier, but I
wanted to feel as if I was doing my part to honor her courage.

That’s when I decided to run a half marathon.

I had heard about Team in Training, a charity that supports
leukemia/lymphoma research, through a work friend. I called and signed
up, pledging that in return for 24/7 coaching and support, I’d raise
$2,000 for the Leukemia and Lymphoma Society.

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Amy & our friend, Victoria, sporting their “Geaux Team Laura” shirts with pride!

And just like that, I was signed up for my race— a 13.1 mile course
through Philadelphia in mid-November.

The trainings weren’t easy. Every Saturday, our Team in Training crew
from New Jersey gathered at an area park to put in our miles. Before
each run, a team member shared a story of inspiration. Some of my
fellow runners shared their own heartaches from relatives and friends
who had lost their lives to blood cancers. I shared Laura’s story one
Saturday, and we dedicated our run in Liberty State Park, with
beautiful views of the Statue of Liberty, to her ongoing battle.

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Amy on a training run on the George Washington bridge.

When you’re running for a cause, it’s a lot easier to put one foot in
front of the other. It’s also a lot easier to wake up at 5:30 a.m. on
a Saturday morning, knowing that if you hit that snooze button, you’ll
be breaking a promise that you made to commit to a worthy cause.

The race was not easy. But as I donned my purple team Jersey, with
Laura’s name written on the back, I knew that I was going to finish. I
had to, for Laura, for myself, and most importantly, for my teammates.

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Amy with her Team-in-Training

Around mile 11, it felt as if every muscle in my body was begging me
to stop. I kept going (although I must have looked like a lunatic as I
started to talk to myself for encouragement).

It was only fitting that our grand finish was near the Philadelphia
Museum of Art, the site of the famous steps from the “Rocky” movie. As
I crossed the finish line with a time of 2:36, I played “Eye of the
Tiger” and raised my hands in relief and pure joy. And I thought to
myself, “I am officially retired from running,” and had a good laugh.

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Amy crossing the finish line!

Once again, I’m not a runner. I don’t pretend to be. But I am a
fighter, and because of Laura’s inspiration, I’m proud to say that I
won.

Light the Night

The Leukemia & Lymphoma Society’s Annual Light the Night fundraiser was on last Saturday on Nov. 3! As you might recall from my post 2/3 of the way through! several members of my Army family surprised me with a “Team Laura” night back in July. They had “Geaux Team Laura” t-shirts made and showed up at one of our favorite BBQ restaurants called The Salt Lick. Another way they showed their support was by creating a Geaux Team Laura team for Austin’s Light the Night. I’m so happy and proud to report that we exceeded our fundraising goal by more than $400! The event itself raised more than $830,000 for the Leukemia & Lymphoma Society, and I am so proud to have been a part of this amazing effort. I can’t wait to attend next year, and I hope to be further involved now that I have more time for living vs. surviving.

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Team Laura repping at Light the Night 2012 at Lake Mueller Park in Austin.

The Light the Night volunteers gave everyone balloons to symbolize their role of support at the walk. I was given a white balloon to show that I was a survivor. The others were given red balloons to show that they were supporters. Others were given gold balloons to show that they were walking in memory of someone who had passed away from blood cancer. I’m so thankful that I’m still here today to walk in these events and speak publicly about my illness. Seeing all the gold balloons brought home the fact that so many people are not here to do that for themselves.

Along with my Army family, some truly amazing friends of mine from Louisiana are also living in Austin and walked with us as well. They have been such a major part of my life and I don’t know where I would be without them.

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From left to right: My “homegirls” Megan, me and Britni at Light the Night 2012.

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My hubby and self-dubbed “personal trainer,” Rene, was a front-row supporter at Light the Night as well.

Speaking of training, on Sunday I finished the second week of Couch to 5K! The second week work outs consisted of a 5 minute walk, followed by alternating intervals of 90 second runs and 2 minute walks, along with a 5 minute cool down walk. As I mentioned in my last entry, I’d been thinking about what I wanted my goal fitness goals to be beyond completing a 5K sometime around the New Year.

This past weekend, I did something a little crazy. I signed up for the Inaugural Nike Women’s Half-Marathon in Washington, D.C. to benefit the Leukemia & Lymphoma Society. I think its pretty rad that my first race will be the first year that the race will be held in D.C. Along with being our nation’s capital, it’s also one of my favorite cities and home to many of my amazing friends. The run will take place on April 28, 2013, which is significant to me for a couple of reasons. It’s the weekend after my 26th birthday. It also falls in between the first anniversaries of when I went into the ER for chest pain (April 20), and when I was diagnosed with Hodgkin’s (May 11). It’s very fitting that I’ll get to celebrate both my birth and survival by running to raise awareness and funds to fight blood cancers! If you’re interested in helping me reach my goal, please visit my fundraising page.

Along with the excitement, I’m also scared as well! Even before I had cancer, I never ran that far in my life. I certainly have never committed to fundraising that much money as an individual before either! That being said though, after doing a lot of research and soul searching, I just know in my heart that this is the right time, the right race and the right cause for me. I can do this and I know I will feel amazing for it! Cancer has definitely shown me that there’s no time like the present to get busy living.