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!

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2 thoughts on “Hodgkins Schmodgkin’s

  1. Thanks for sharing my story Laura! I linked your blog to mine tonight too – so it’s going to be doubly crossed on the inter web! Can’t wait to meet you in three weeks! 🙂

  2. Pingback: The Sam Long Guide To Fundraising | the lymphoma letters

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