Life Update: April & May

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

I left off right around my birthday.

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

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

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

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

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Totally hot, right?

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

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

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

 

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Sam & me preparing to zip line over Fremont Street.

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

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

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

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

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

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Epic, right?

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

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I take party themes very seriously.

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

 

 

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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!

Austin and Boston

As many of you know from the steady stream of social media posts and photos, I finished the Austin 10/20 –my first race EVER– on Sunday. The Austin 10/20 race is only in its second year and consists of 10 miles  and 20 bands. Every half-mile is a different band. The official time limit on the race was three hours, so that was my goal. I had only done 10 miles one other time during training and it had taken me almost four hours to complete. Granted there was some unexpected off-roading and I forgot my nutrition at home, so there were some major hiccups on that training walk. However, I was anticipating being a little over the goal of 3 hours. I was so stoked when I crossed the finish line at 2:49:39. What was really cool was having the support of my Team-In-Training coaches and teammates to cheer me on. So many of them stayed at the finish line to support their teammates, it was a really special feeling and it motivated me to muster enough energy together to run the last 50 feet or so and really show off for the camera.

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The official photos are much more obnoxious impressive, I assure you.

My good friend Megan and my husband Rene also did the race with me. Rene, being an Army guy, ran and finished well ahead of me and was at the finish line waiting for me. Megan unfortunately inflamed an old injury to her foot a few weeks before the Austin 10/20, but managed to finish the full 10 miles. Megan is quite a bit faster than me normally, but she ended up being the last Team-In-Training participant to finish due to her injury. However, when you are the last TNT person to cross the finish line…. something really cool happens. All the coaches from all the chapters that have people at the event come and walk with you to the finish line! Most of the teammates also stick around to cheer you on at the end. It was an incredibly moving experience. Seeing Megan cross the finish line was so inspiring to all of us and I’m so proud to have her as a friend.

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Megan with all the TNT coaches approaching the finish line.

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Megan, Rene and me posing with our medals. I’m really impressed with how good we all look considering we were all limping around at this point.

I wish I could just end the entry here, but unfortunately I can’t. Many people have written about the events in Boston with much more eloquence than I can. But it was impossible for me to blog about my own race triumph without discussing what happened in Boston. These are the types of photos we should be seeing from people who participated in the Boston Marathon. Photos documenting joy, triumph and pride. Instead, what we saw was tragedy, carnage and loss.

I was on my way to a doctor’s appointment when I got a CNN breaking news alert that the winners had crossed the finish line. I figured that would be the extent of the news I would hear from Boston the rest of the day. A few hours later I checked my phone and saw there had been a bomb blast at the finish line. I went home and watched the news for several hours, talked to family and friends, checked on people I knew who might be there via social media to make sure they and their loved ones were safe. My first thoughts when I heard the news was shock. How the hell does something like this happen in today’s day and age?

I also kind of felt guilty for being able to finish my race on Sunday and celebrate that achievement when so many people were not able to do that the next day. Many will never have the opportunity to do an endurance event again or ever. I feel horrible that an activity that people love has been forever tainted. That a race that many considered the pinnacle of their running achievements has been marred forever. That people lost their lives and their limbs just for being at a marathon– either as a spectator or participant. No one should ever have to worry about being attacked EVER, let alone while they are doing something positive for their health and the world. Can we no longer experience achievement publicly without having some lunatic try to kill us? Will anyone be able to cross a finish line without thinking about Boston? Was the person responsible looking for irony? Was he thinking “Let me take down these athletes at their peak physical fitness level so I can feel powerful?” Was he just going for big headlines? Will we ever know?

People who run marathons are exceptional people from all walks of life! I don’t have the stats on this but many people who decide to run marathons in their spare time do it because they’re like me (but way faster). They have experienced some kind of traumatic event  in their lives and they either want to channel their feelings toward something positive, or they want to take charge of their health in a very active, goal-oriented way. Most likely its some combination of both. The people at this race are people like this Massachusetts couple. Both have either fought or are currently fighting blood cancer and  have raised more than $70,000 for the Leukemia & Lymphoma Society over the years. According to Team-In-Training’s update yesterday, thankfully all 145 Team-In-Training participants who were at the Boston Marathon Monday are accounted for and okay. But what about the 8-year-old boy or the 29-year-old woman or the young graduate student from China who were all killed? They were all there to support people they cared about and died as a result. It’s all just awful and unfair.

As many people have stated though, it has been beautiful to see people band together in the face of adversity. We have heard many stories about marathoners immediately running to the hospitals to donate blood for the wounded even though they were exhausted from their race and also traumatized from the days events. Or about the surgeon who had to perform life savings surgeries despite just finishing a marathon. Or of the first-responders and soldiers who were there to help manage the chaos and start saving lives immediately. It’s truly a testament to the indomitable spirit of humanity.

These events will leave my heart heavy for a long time. My prayers are with all those affected by this tragedy and with everyone as we struggle to understand these events. I know many people around the country are organizing memorial runs/walks and Austin is no different. One will be held at Town Lake in Austin tomorrow night, so I’m hoping I will be able to make it.

Stay safe, everyone!

 

The Sam Long Guide To Fundraising

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

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

So here it is: The Sam Long Guide to Fundraising

1. Consider things your friends and family already do.

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

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

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

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

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

2. Use social media marketing to your advantage.

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

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

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

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

3. Ask.

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

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

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

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

4. Show you care.

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

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

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

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

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

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

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

Hodgkins Schmodgkin’s

 

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

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

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

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

Sam Long

Sam and her cat

What is your survivorship story?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now it’s been almost a year.

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

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

Why do you want to attend the OMG Cancer Summit?

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

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

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

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

Fertility Forum follow-up

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

meagan 2

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

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

Megan Lipe

Lassies reunite in New Orleans!

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

Mary Anne

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

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

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

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

I’ve shared the links to the videos below:

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

Part 2:  http://youtu.be/xbKPZ6R4DMg

Part 3:  http://youtu.be/UxxGI7wiMl4

 

Remembering Jay Taylor

I received this email this morning from Colin, Austin’s Team-In-Training coordinator:

“I don’t think there’s a proper word to begin this e-mail. Our dear friend, Jay Taylor, passed away. He was with his family in Monroe. Please keep them in your thoughts and prayers through this difficult time. You will be sorely missed my friend. As Dorothy says, you showed us how it was done. You lived.”

You might remember me discussing Jay from my earlier entry, PT Scans & Mission Moments. Although I didn’t know Jay, I learned about him through the many friends he still has in TNT. A fellow-Louisianian from Monroe, he became involved with TNT when his mother died of cancer about 10 years ago. He just found out he had stage 4 lung cancer within the past year and a half or so. His father is also currently fighting cancer. Please keep Jay’s loved ones in your prayers as they struggle through their losses.

His story will continue to remind me why I’m training for my half-marathon in June– to run (or walk) for those that can’t.

Colin forwarded us some photos of Jay during his TNT days that I have shared below.

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