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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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.

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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.

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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

 

Six Months Cancer Free!!!

I wanted to let everyone know that I had my official follow-up with my oncologist yesterday and received the results from my PT scan, and I’m still cancer free!!! I’m so relieved, I can’t even express it. I know I seemed like a cool character last week, but I had pretty much convinced myself that every little itch/random pain was a direct result of returning cancer. Whew!

In even more good news, the PT scan detected “activity” in my left ovary that is “consistent” with ovulation. I didn’t even know PT scan could pick up on that, the more you know! As you might have read in my earlier entries, I went through fertility treatment leading up to my cancer treatment because there was concern that chemo/radiation would leave me infertile. Although we won’t know until we actually start trying to have kids how everything is operating in that department, at least there’s a good indication that things are on the right track!

Which brings me to another topic. I won’t be blogging for a a few days since I will be traveling to New Orleans for a good friend’s wedding. Coincidentally, I happened to be invited to speak at a Fertility Forum hosted by the Leukemia & Lymphoma Society and Stupid Cancer in New Orleans on Thursday as well. I will discuss my journey through fertility and IVF treatments in order to help other young adult cancer patients, parents and healthcare providers understand some of the problems young adults face when facing these choices. I’m super excited/nervous to have this opportunity to tell my story and help educate others. Wish me luck!

PT Scans and Mission Moments

It’s been awhile since I’ve written an entire blog post on my own and figured you were long overdue for an update. I actually wrote this post intermittently throughout the day yesterday. I got a large chunk of writing finished while waiting to have a PT scan done. I’ve actually been looking forward to having my PT scan. I like having the reassurance that everything is going well with my body. I didn’t get one after radiation, so I haven’t had one since the first week of September when they checked me out after my last chemo. Having a check-in will definitely make me feel better about everything.

Unfortunately, I forgot about everything that comes along with the PT scan. Beforehand, I have to get lab work done which means one needle stick. Once I get checked into radiology and they are ready for me, they insert an IV. Usually this only means one needle stick, but today it meant several. I offered the tech my left arm since the right had already been stuck once today, and I was trying to save it further trauma. The left didn’t work so well, so the right ended up getting doubly pricked despite my best efforts. They also let a nurse in training do my glucose check, so along with the sore arm I now also have a sore bird finger on the same hand as well. I also had to fast for four hours before my appointment. Once there, the whole process takes about 2-3 hours as well. Needless to say, I was a bit “hangry” by the end of my appointment, as my sister Sarah would say.

Also, some words of wisdom to anyone who might be having a PT scan. You are not allowed to wear anything medal when having a PT scan done. This includes underwire bras, ladies. No one reminded me of this fact before I went and instead of wearing my standard PT scan uniform of sweats with a baggie t-shirt/sports bra combo, I went in my work clothes that included a fairly tight shirt with my standard wired bra. It wasn’t until it was time for the PT scan that I realized my mistake. As luck would have it, my local hospital doesn’t have its own PT scan unit, so it uses a mobile unit that requires me to leave the comforts of the hospital before getting into what I affectionately call the “PT Mobile.” Again, not usually an issue. But once I changed out of my bra, I had to traverse the extremely chilly and breezy walkway between said PT mobile and the hospital building. I’m sure the PT scan techs got a nice visual of snap and crackle (How I Met Your Mother fans will catch my drift) in the process. At this point though, who at that hospital hasn’t seen my boobs? So I just kind of shrug off these awkward situations these days.

The local location of my healthcare system can only do PT scans on Wednesdays, which means they can’t schedule me for my follow-up with the oncologist to get my results until Monday, so I have the whole weekend to obsess over it. Its pretty nerve racking. While the chances of someone relapsing from stage 1 Hodgkin’s are extremely low, I personally have met people that it has happened to and — while thinking positive thoughts– I’m also trying not to be too blase about it just in case something turns up on the scan. I called my oncology nurse and she said that she could let me know on Friday if there was something to worry about or not, but that my doctor still wants to meet with me on Monday to discuss the results in detail. Hopefully I’ll get the all clear and can enjoy my weekend as much as possible. One of the reasons I keep myself so busy is because I don’t want to sink into obsessive/negative thoughts about whether or not my cancer will come back.

In addition to all the craziness I do on the reg (working full time, contract work, team-in-training, volunteering with the young adult social group, blogging, being married, etc.). I have a very active friend group with lots of major milestones coming up! In addition to a lot of wedding on the horizons, I’m going to two baby showers to go to this weekend! I am so incredibly excited it is ridiculous. I have the absolute cutest gifts too. I will  post some pictures of them after the baby showers because one of my teammates actually made them as part of her Team-In-Training fundraiser, and I absolutely have to give her a plug on here because she is amazing. She has helped me get all of my gift shopping done for the year basically, and it has saved me so much stress and time.

Speaking of which, Team In Training is going really well and has been an incredible blessing. One of my coaches this weekend was telling me how well I fit in and it felt like I’ve always been on the team, and I feel the exact same way. It’s like a family I never knew I had!

On Saturday, we had our mission practice where all the TNT groups in the city (triathlon, marathon and biking) get together and have one large practice. We started off practice with our scheduled mileage, which was 4 miles. The walkers did our’s in about an hour, which was pretty great time for me. After that, we all met back up and had a “mission moment” which was dedicated to Jay Taylor.

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We have a mission moment at every practice, but its usually pretty short and its basically consists of someone sharing a story that motivates them personally. Some talk about loved ones that they lost, and others about someone they know that is still going through it. This practice was dedicated to Jay because he is the honored hero for the whole team, and multiple people spoke about him. Jay became involved with TNT about 10 years ago after his mother passed away from cancer. I’m not exactly sure of the details, but I know that he served as both a participant and coach throughout the years. What was very obvious though, was that he made many close friends on the team.

One of the coaches sharing her story about Jay.

One of the coaches sharing her story about Jay.

About a year and a half ago, Jay was struggling to breathe while training for a triathlon he was doing through TNT. Soon he began having trouble breathing even when he was resting. They discovered that he had stage 4 lung cancer. Unfortunately, lung cancer is one of the less treatable forms of cancer and his was obviously very advanced by the time they caught it. He tried several experimental treatments, but unfortunately none of them are working and he recently flew home to Monroe, La. to enter into hospice care. His father is also battling cancer right now, so please keep their whole family in your prayers. I haven’t even met these folks, and I’m personally struggling with the injustice of it all. I can’t even comprehend what they are going through right now. However, his friends’ messages were that as helpless as cancer can make us feel, there are things we can do to fight and that’s what TNT is here for. It was really beautiful to see how many lives Jay affected in such a positive way, and I’m really sorry I haven’t had the chance to meet him.

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Teammates during Mission Moment

After the mission moment, we all did a silent mile — one of the most moving experiences of my life. Along the route there were several signs that served to educate the public and also to motivate the participants.

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As everyone finished the mile, they made two single file lines. As people finished they received high fives from all their teammates. I actually had no clue that they were going to do this. And since I had been taking photos of all the signs along the silent mile I had my hands very full and was grossly unprepared for the high five action I was received at the finish line. I was equally unprepared for the photo that they took of me.

Laura mission mile

I mean, really?

Rene looked awesome though.

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My husband is much more photogenic than I am.

But in all seriousness, as I was going through my sea of teammates, I was close to tears several times. It was such an incredibly moving experience. As I went by, many of the people who knew my story gave my hand an extra squeeze and patted me on the back. It was really amazing. I seriously recommend TNT to anyone trying to do endurance sports, whether they have a personal connection to the cause or not. The atmosphere is incredibly magical and positive.

After the last person came in, we all got into our standard huddle that we do at the beginning and end of most practices and yelled “Go Team!” It was the loudest “Go Team!” I’ve heard yet.

It became more of a party atmosphere after that, and we went to the tents they had set up and had breakfast tacos, bagels and all sorts of goodies. One of the coaches also had made us our own special ribbons with the names of our honored heroes/angels on them. See if you can spot which one is mine.

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Hint: It’s the LSU-esque one in the middle.

Someone also made a poster with photos of all the honored heroes.

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Three of my honored heroes and angels were pictured as well. In the shot below, you can see both Grant Hebert (who you may have read about in the entry Mary and Grant) and Jeannie Wannage, my friend’s mom who passed away a few years ago.

Grant and Jeannie

Also pictured was my sister’s friend and coworker, Brent Mesquit, who is currently fighting Multiple Myleoma.

Brent Mesquit

TNT also had invited a representative from Be the Match there to register folks for the bone marrow registry.

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As y’all know, this is one of the causes I’m most passionate about and it was beautiful to see a huge long line forming of these amazing TNT volunteers. The line would probably be longer, but many of the people there were already registered or (like me) are not allowed to due to our medical history. Others, like my husband (who was born in Germany), have spent too many years in certain countries and are not allowed to donate.  My point is that many people who would be otherwise willing and motivated to do so, are not allowed to donate blood or join the bone marrow registry for various reasons. If you qualify, please please consider becoming a blood bone marrow donor. To find out if you qualify and to learn more about the bone marrow registry, visit www.marrow.org. My friend, Amber, recently donated bone marrow and wrote a guest blog post, Be the Match, awhile back which you can read here. I know several other people that have registered since my illness, and I’m very excited to find out if they ever get matched with someone in need.

We ended the Mission Practice with our first ever team photo. I am so incredibly proud to be part of team-in-training.

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Mary and Grant

On this day honoring the patron saint of young people and love– St. Valentine — I wanted to take some time to discuss two very special people: my cousin, Mary, and her late boyfriend, Grant Hebert. They were only 17 and 19 when they met, and sadly Grant passed away less than a year later when he was 20. I only met Grant once on Easter Sunday 2009, but his presence made an impact on our whole family. Though I didn’t know him well, he was extremely nice and polite, and he made Mary very happy. Not long after they started dating, we heard through the family grapevine that Grant had a relapse of cancer. I knew he had some form of leukemia, but not much else. I started following a Caring Bridge blog written by Grant’s mother, Missy, about his journey. Missy recently explained to me that Grant had been diagnosed with Acute Lymphocytic Leukemia when he was 14. After enduring 2 and a half years of chemotherapy, he achieved remission and went on to graduate from high school in 2007. Shortly after he met Mary, he relapsed in 2009.

Although I had been an occasional blood donor in the past, it was from reading about Grant’s experience that made me really passionate about blood, platelet and bone marrow donation. Grant needed regular blood and platelet donations due to his leukemia, and there was sometimes difficulty finding appropriate donors that were A+ and CMV- like him. CMV is short for cytomegalovirus, a virus that almost everyone has antibodies for by the time they are an adult. However, some people — like Grant and myself — do not. I was never able to donate directly to Grant because I was living in Illinois at the time of his illness, but I made a point to donate regularly so others in his position would have better access to blood. He continues to be an inspiration to me today, and his family and Mary were very supportive when I asked if he could be an honored angel for my Team-In-Training fundraiser to benefit the Leukemia & Lymphoma Society.

Mary was also very generous and agreed to answer a few questions about her experience as the significant other of a cancer fighter:

When/how did you meet Grant?

I met Grant in December of 2008. It was a Sunday afternoon and I was working at Fairview Cinema at the time. He came to the four o’clock show to see Yes Man. Now I had seen Grant a few times while working at the cinema and always thought he was really cute. I had no idea who he was, but one of the girls I worked with did. She told his name was Grant and he was a great guy. I was curious and when I got home from work I found him on Myspace, sent him a friend request. He accepted and we started talking. 

When/how did he tell you he had cancer?

He first told me he had had cancer when we were talking, before we started dating. If I remember correctly, he told me he first had cancer in high school but he was in remission and had been for almost 5 years. In 2009,  He went for a check up and counts were low, so they wanted to do a spinal tap. He called me that afternoon to tell me that he relapsed, but that he would be ok. He also made sure to let me know that I was going to be able to go see him. 

What was your reaction?

I’ve thought about this question for a while, because I didn’t know how to answer this. My answer may sound strange but it’s true.

When he told me he had relapsed I didn’t freak out or cry. I just let it sink in, I guess you could say. Honestly, with Grant I believe it was love at first sight. What some people don’t know is Grant tried to get rid of me shortly after he relapsed. He asked me to be his girlfriend on January 14, 2009 the same day he told me the news. Maybe a couple of weeks later, he sent me a text telling me that he understood if I left. That he would understand if I didn’t want to be with him because he had cancer. I basically told him to shut up and I promised him I wasn’t going anywhere. That I was going to be there till the end. What can I say, I loved him. 

How did Grant handle the news? 

I really can’t answer this one because I don’t know. I can about imagine that he was upset, but he wasn’t going to let it get the best of him. He was going to live life to the fullest, and in my opinion he did.

What advice do you have for the significant others of cancer patients? 

First off, if you are a boyfriend or girlfriend of a cancer patient, don’t run. It is indeed scary seeing the one you love go through everything that comes with cancer, but it will also hurt your loved one more if you left. Also be the best support you can. Spend as much time as you can with them, make lots of memories. You never know if or when your last day with them might be. 

 What do people need to know about cancer? (From Laura: Coincidentally someone also gave me a plaque with this poem during my cancer treatment and I found it very helpful as well.)

Cancer and do so many things, but cancer cannot destroy love. 

A cancer mom on Caring Bridge posted this on her page. I have loved it ever since I first read it. 

the Author is unknown. 

 Cancer is so limited…

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot eat away peace.

It cannot destroy confidence.

It cannot kill friendship.

It cannot shut out memories.

It cannot silence courage.

It cannot reduce eternal life.

It cannot quench the Spirit.

What would you like Grant to be remembered for?

I think It’s not what I want him to be remembered for, but what he will be remembered for. The picture below says it all. Yes, Grant has no color and it’s not the best picture of him. One week before this picture was taken, Grant had just been discharged from the hospital after having pneumonia. The day of my graduation he had to go back to the hospital for a spinal tap. His Grammy told me that he told the doctors he had to be gone by a certain time because his girlfriend graduated tonight. He made it to my graduation party, which was good enough for me. I could tell he still wasn’t feeling 100%. But when my dad asked him, “How you feeling Grant?”  Grants answer was, “I’m feeling great.” 

Grant never complained about how he felt. He always had the infectious smile on his face. I could have had the worst day and just seeing Grant made my day so much better. In the 9 months Grant and I were together I never ever saw him cry. The only time I saw him cry was the last time I saw him awake when he was in ICU. I was leaving the hospital for the night and went back to see him one more time. I held his hand and he mouthed I love you. I told him I love him too. That was the first time I saw him cry. I think Grant knew that was the last time we would see each other while he was awake. 

I will say this, I get asked by people who hear about Grant if I ever regret dating him. I don’t regret any minute of it. I learned so much from this amazing man, I truly believe Grant helped make me the person I am today. People also ask me how did I do it? How did I stand by his side knowing he could possibly die? When you love someone so much, none of that matters. The cancer didn’t scare me, being without Grant scared me. 

“The Dance” by Garth Brooks explains how I feel now. 

“I’m glad I didn’t know the way it all would end, the way it all would go. 

Our lives are better left to chance, I could have missed the pain but I’d have to miss the dance.”

Yes, I miss him everyday, I think about him everyday, but I regret none of it. I loved Grant then and I will love him forever. I’ll just be happy the way Grant would want me to be. I lost him, but I gained an amazing second family. 

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Lassie Love

To say I was involved in college, doesn’t even begin to scrape the surface. I held leadership positions in at least four student organizations (that I can think of), memberships in several others, wrote for the student newspaper for awhile, worked as a resident assistant for three years and held a variety of internships. I also, of course, managed to make time for tailgating and football on Saturdays in the fall, and did my fair share of partying. Though there was definitely room for improvement in my GPA, I was still accepted into the #1 advertising school in the country (which I chose not to go to for some reason) and also received assistantships/scholarships to several other graduate programs. You’re probably thinking, “Man, this chick is really bragging on herself.” However, I have a point and I’m about to get to it.

Though this is really a topic for another blog post, my advice to anyone about to start college is to 1) live on campus at least a year, and 2) get involved with student organizations. Not only are these tips statistically proven to increase graduation rates and GPA, but they also provide students with the opportunity to learn essential professional and relationship building/managing skills that will be used the rest of their lives. I can also trace back roughly 2/3 of my relationships and extended network back to these two tips.

I spoke a lot about the friendships I made through the Manship School of Mass Communication in an interview a few months back. However, before we get to today’s guest blog post, I really need to spotlight one of the student organizations I was in. I pledged the Army Scotch Guard, a non-greek sisterhood and service organization, my first semester at LSU. I can’t even begin to cover the importance of which my experiences with Scotch Guard have played in my life. Scotch Guard was founded by a Scottish man, which explains why our mascot was the Scottish terrier, we wore plaid uniforms and we called ourselves “lassies.” I became obsessed with all-things Scotty-related and eventually got my adorable fur-baby, Frasier, as a consequence.

The photo below was taken the day Rene & I picked Frasier up from the breeder in Oklahoma, Thanksgiving Weekend 2010. Note the Scotch Guard sweatshirt I’m wearing.

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Rene & I were also married by a Scotch Guard alumna as well. Several of my best friends are people I met through Scotch Guard (I’m even serving as a bridesmaid in one’s wedding in March.) Since Scotch Guard is affiliated with the ROTC, many Scotch Guard lassies are also either in the military or are military spouses, so I often find myself turning to them for military-related support and advice. Another lassie, Britni, coincidentally moved to Austin around the same time as me and was a tremendous support throughout my cancer journey. She even walked on my Light the Night team in November.

I can really spend all day talking about how the relationships I forged through Scotch Guard have benefited my life. However, the point is that relationships are important and you never know what role people will play in your life when you first meet them. My advice to other cancer fighters/survivors is not to be afraid to reach out to those old friends, friends of friends, acquaintances, or anyone else you think might be able to help you… no matter how long its been since you last spoke or saw each other (or even if you have never met). Support is everything. And they will most likely be happy to help.

Which brings me to another fellow lassie– Megan. Megan and I met in 2005 when I first joined Scotch Guard. She was a few years ahead of me, so we didn’t get to know each other extremely well before she graduated. However, one thing I always remembered was that she was a passionate volunteer for the Leukemia & Lymphoma Society. I had a vague recollection that she may have been some type of cancer survivor, but I honestly was foggy on the details. When I found out I had Hodgkin’s Lymphoma in May, I immediately thought of Megan. Luckily, we had remained Facebook friends in the six years or so since we had last seen each other (gotta love social media!) So I sent her a Facebook message that went sort of like this, “Hi Megan, I know I haven’t seen you in many years, but I think you might have had some sort of blood cancer (maybe?) and I just found out I have Hodgkin’s. Please help! P.S. Congrats on the marriage! Lassie Love!”

It turned out that Megan had actually also been diagnosed with Stage IIB Hodgkin’s Lymphoma about 10 years before at age 17. From that very first Facebook message, Megan gave me amazing information and advice. Among many many things, she gave me some insight on what to expect from the ABVD chemotherapy we both had (constipation anyone?) and also referred me to a great program with the American Cancer Society called Look Good/Feel Better. One of Megan’s sage pieces of wisdom is very fitting for this blog entry:

“It’s so so so important to have as many resources in your back pocket as you can when you go through something like this. Take hold of all of the supportive people in your life and make sure you are still doing some things that bring you a little joy each day.”

She’s still playing an amazing role in my life today, and even arranged an opportunity for me to speak at the New Orleans’ LLS chapter’s Fertility Forum for cancer patients & medical professionals in March.

Fertility Forum Save the Date 2013

Megan is now a 27-year-old clinical psychologist and very graciously agreed to do this guest blog post for me. Hopefully others will benefit from her experience like I did!

Q&A With Dr. Megan:

Megan Armstrong

Please give me a timeline of when you started suspecting something was wrong, receiving the diagnosis and treatment.
I started to suspect that something was wrong around Christmas-time in 2002. I just felt “weird.” I had a fever and a dizzy spell that came without explanation. Not too long after that, I started to notice that there was a lump on my neck. It wasn’t very large and really could have been mistaken for swollen lymph nodes due to an infection. First step was to see my primary care doc. I believe I tried two rounds of antibiotics to get rid of the “infection.” That didn’t work so I was sent to an ENT. He wanted to just wait, so we watched and waited for quite a while. I honestly can’t remember how long it was, but I do know that looking back, my parents were infuriated that he wasn’t aggressive enough. I eventually saw another ENT (same hospital) and had a needle biopsy in early March. We received a call that the results were “suspicious,” so I was scheduled for surgery.  I underwent surgical biopsy of the lymph node and by that time, it had grown in size, and was noticeably larger. I was diagnosed a few days later.
What were your initial feelings/reactions to receiving the diagnosis?
Honestly, when my family and I got the call that it was cancer, I really think we felt relieved. It was, of course, a somber moment. I remember my mom answering the phone, me running around the corner to watch her expression, and her telling me the answer just by the look on her face. I never thought I could feel devastated and relieved at the same time, but it’s possible. When I say relieved, it was a feeling that, “FINALLY, we know what it is!” It had been almost THREE months of waiting. More than anyone, 17 year olds really hate waiting because we’re all about immediate gratification! Now that we knew what it was, we could figure out a plan of attack. I became the most outwardly upset at my first visit with the oncologist. The chemo process sounded so scary, though I was very intrigued to hear that I could EAT while getting chemo! The worst part was hearing that I would indeed lose my hair. Hands. down. the. worst. part. I knew that it would likely happen, but having it confirmed was awful. I cried and cried. I cried so much that the nurses let me use the internal staff elevators to go throughout the hospital for my various tests so that I wouldn’t have to see anyone. For their kindness and patience, I am so thankful!
Has being a cancer survivor guided your life choices in any way? If so, how?
100% yes. You know, I’m a fortunate person because I’ve always been bright and motivated. I knew that one day I would do good things, but now I feel that I do and will continue to do GREAT things. Leaving high school, my intention was to study nursing at LSU. After a semester, I realized it wasn’t what I really wanted, so I had to do some soul-searching. I thought long and hard about what I really loved and what I’d be good at. I started to remember how much I loved my Psychology class in high school and it went from there. Throughout graduate school and beyond, I made the decision to become a psychologist who provides care to cancer patients and their loved ones. It has been an amazing and incredibly fulfilling. To be completely candid, sometimes I feel like I endured cancer so that I could serve a purpose on this earth – to improve the lives of those who are suffering from similar illnesses. That may not be completely true, but it’s at least my way of thinking about it. Perception is everything. 🙂
Do you assist oncology fighters/survivors in your profession? How so?
Currently, I do not in my paid profession. I had the unique opportunity to take a research position working with patients who have HIV/AIDS. I believe that while there are some differences between the diseases, there are some significant similarities. I absolutely love what I’m doing and I’m happy to have expanded my practice to other chronic illness groups. I do volunteer quite a bit with Leukemia and Lymphoma Society, so I am able to maintain a presence in the cancer community in that way.
What type of challenges do you think are unique to young adult cancer survivors?
I think living with cancer at a young age is unique because it occurs at such a pivotal developmental time point. At times, young adults fall into an unfortunate gap. On one hand, you are no longer a child, and while you get support from your parents, you don’t want to rely too much on them because you are at the stage of wanting to differentiate yourself and become autonomous. On the other hand, you don’t feel completely like an adult either. You’re just at the point of trying to figure out who you are. Cancer gets in the way of that process. Ultimately, that can be a good thing, but in the moment, it is NOT pleasant!
What is your biggest piece of advice to young adults that are first diagnosed, in treatment, and in recovery? (You can separate these out if you need to!)
The first thing I’d say to young adults at first diagnosis is – It CAN be done. I was treated in a hospital for adults and was by far the youngest patient there. I never saw ANY examples of young patients and didn’t know of any young adult survivors. For those who may have a similar experience, I want them to know that you CAN get through this. Throughout this process, be mindful. When I say be mindful, pay attention – make the choice to pay attention to the small pieces of light and goodness that are happening. At times, it won’t feel like much is good. I look back and realize how many people sent cards/flowers or said prayers. I was/am so loved. Much like everyone who is caught up in the day to day, I have to remind myself to be mindful of those things. Oftentimes, when we are thrust into a difficult situation, it’s easy to only focus on what’s going wrong. I am in no way saying that cancer is great and fun – NO WAY!! I just want to point out that there is potential for a great personal growth. Having cancer as a young adult means you are an ordinary person faced with extraordinary circumstances – just try your best. You will never be perfect at coping with it, so accept that.
Please describe any challenge you might still have 9-10 years out of treatment.
My answer for this would be the same as it is for 20, 30, 50, 70 years out of treatment. I’ve learned that if you are diagnosed with cancer, cancer will forever be a part of your life.  Some days I think about my cancer experience and some days, I don’t. I tend to think about it more if I have an follow up appointment approaching soon. I struggled quite a bit the first 5 years out because I was hyper-vigilant about any little body ache/pain I felt. If this is you, you’re not alone! I can say that it gets better over time, but it will never go completely away. I’ve accepted that. The farther you get away from it, the easier it becomes. Overall, I’ve embraced that I’m a cancer survivor and I”m proud of it!!!!