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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Everything You Ever Wanted to Know About My Dead Dad But Were Afraid to Ask

You heard a little bit about my friendship with Allison last year in a post called Best Friends. I recently filled out a background check form for her so she could start a new job with the government and was stunned to really look at how long we’ve known each other: August 1992 to present. Seriously, we met when we were five during nap time in kindergarten. It’s intense.

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Home girls in Austin. We took this photo when Allison came to visit Austin a few weeks back.
Me, her sister Grace, Allison, and Megan.

Allison and her family have been a major part of my life ever since.  I can really attribute her family’s influence to so many interests in my life– from competitive speech to my choice of books to my eventual choice of LSU for college. They also introduced me to the United Methodist Church, which is the denomination Rene and I eventually were married in and made our church home. Like Allison’s mom, Ms. Karen, I graduated in mass communication at LSU and pursued a career in public relations/public service.

Shortly after I began college in 2005, Allison’s dad –Mr. Lee– passed away after a very brief battle with pancreatic cancer. His death occurred in between Hurricanes Rita and Katrina. Shortly after, Allison’s grandmother passed away as well. Needless to say, it was a dark time. Allison, being an amazing friend and writer, agreed to write this blog post about her dad and her family’s journey after his death. If you’re interested in reading more, Allison currently blogs at Fleur De Livre.

Everything You Ever Wanted to Know About My Dead Dad But Were Afraid to Ask

By Allison Gallaspy

There is a spectacular family legend surrounding the birth of Lee Andrew Gallaspy that has endured for the last fifty six years and it is this: that he was midwifed into existence by a magnificently enraged prairie buffalo. The story is not as complicated as the lead-in: his very pregnant mother was on a nature reserve in her native Oklahoma, armed with a camera capable of flash photography and when she employed it at a range that was a little to close for the beast’s comfort, it gave chase. It wasn’t a fight she was predisposed to win, so she succumbed to her overwhelming flight instinct instead and forever after insisted that the exertion sent her into early labor. Shortly thereafter, Lee Gallaspy took his first infant breath, the first exhalation of billions that would come after in the course of his 49 years of life. It’s a remarkable genesis story and we love it for what it seems to tell us about the baby boy born of a buffalo: that his life would not be free from unique difficulties, but that he would ultimately come through them safely and more distinguished for having endured them.

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Allison’s favorite photo from her dad’s childhood.

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Mr. Lee playing football for our Alma Mater, Lafayette High School

The family lived in Lafayette, Louisiana where his dad was employed as a geologist and his mother ran the operating rooms of the local general hospital as a surgical nurse. They added two younger siblings over the next half decade, his brother, Alan and sister, Lynn. Lee grew up in the same house where his dad still lives today; there he developed a fascination with John Wayne movies and Cowboy culture, watched Neil Armstrong land on the moon and tried to capture the moment in a photograph of the family television set, relaxed with his buddies after football practice, and readied himself to go the prom in a powder blue tux with his sweetheart, Karen Cooper. He attended LSU in Baton Rouge where he was a member of Phi Gamma Delta fraternity, earned a bachelor’s in political science and his Juris Doctorate from the law school. He married Karen in the week between Christmas and New Year’s in 1978 at Asbury United Methodist Church in Lafayette; the sanctuary was still decorated with yuletide greenery as they exchanged vows. Lee went on to serve as a public defender for almost twenty years, which never earned him the bloated lawyer’s salary, but satisfied his generous heart and social conscience. In 1983, he became a father when he and Karen welcomed a baby boy with the undeniable, implacable Gallaspy butt-chin. Two years later, the family added a girl, and two years after that, I was born. My dad always said that each of our birthdays was the best day of his life.

 

Mr. Lee and Ms. Karen attending a fraternity formal from their years at LSU.

Mr. Lee and Ms. Karen attending a fraternity formal from their years at LSU.

And that’s a pretty great statement from a guy who had a pretty magnificent life. My dad never won any awards, he never met any famous people, he never earned a book deal or a reality tv show. He worked. Until his job almost broke him. He sang. As the bass section lead in the church choir. He loved. His family, LSU tigers football games on Saturdays, road trips and traveling, reading books about our nation’s history. I’ve come to feel that he was the perfect dad for me. He realized that his job as a parent was to be steadfast when I was confused and to show me understanding when I didn’t understand myself or necessarily deserve it. He was a great mentor and teacher, especially to teenagers – whether they were related to him or not. If you had a question, he was quick with a more-than-adequate educational lecture or dogged in his pursuit of resources that knew more than he did. He had a way of letting you know if you were wrong about something that was gentle, affirming, and always made you feel free of rebuke or judgment. But more than anything, the thing about Dad that made him magnificent wasn’t that he was always perfect (because of course he wasn’t) but that he was dedicated to living his principles, that he was, for everyone who knew him, an example of integrity and empathy that was neither boastful nor secret.

Naptime with Allison's brother, Will.

Naptime with Allison’s brother, Will.

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Mr. Lee carrying Allison on his back.

My mother, brother, sister, and I sat in a row in a dark movie theater last week, laughing inappropriately at a line from the movie The Guilt Trip. Barbara Streisand’s character introduces a friend of hers to her son, played by Seth Rogen, by saying her name, that she’s the leader of their weight watchers group, and then inserting the apparent non sequitur that had us in stitches: “her husband died.” The rest of the theater eventually caught up with us when the punchline came through in the next section of dialogue. (Rogen: Oh, I’m sorry. Sassy Older Lady Friend: Why? I’m not.) But the rest of the theater audience wasn’t laughing at the same thing we were when they joined our mirth. We weren’t laughing at the dumb, easy joke. We’d been laughing at the perfect moment before it, at the discomfort everyone else in the theater was feeling, at the clumsy display of the very real (if slightly exaggerated) impulse other people feel to identify us by our tragedy.

Our tragedy was that we lost a vital member of our family seven years ago to pancreatic cancer. A family friend told me very bluntly at the beginning of our ordeal that, “people hear the word ‘cancer’ and they instantly think ‘death.’” In my dad’s case, that mental shortcut ultimately proved itself true. The progression of my dad’s disease was typically quick; he died exactly three months after he’d been diagnosed by the discovery of inoperable tumors on his pancreas and liver. Diagnosis itself is a process of identification; unfortunately for my dad (and almost every other pancreatic cancer patient who is not Steve Jobs strata wealthy) it’s a process that didn’t begin early enough. Early detection is the cornerstone of cancer treatment, but it’s largely impossible with my dad’s type of cancer. He didn’t hesitate to start chemotherapy, on an experimental drug that was actually celebrated at the time for having up to a 20% success rate, but which honestly probably only hastened the deterioration of his condition. He woke up on September 18, 2005 and took the last of his breaths. I was eighteen years old.

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It’s always a startling revelation for us children when we realize that our parents were fully-formed people with their own lives before we came along. My dad, Lee, was an excellent counselor upon whom friends and family could always depend. He was a funny guy. He was a dreamer, who acknowledged that our justice system was deeply flawed in practice but essentially unrivaled in concept, who never quit believing that it could be improved. He was a sports fan. He was a cherished friend. Each conversation I had at his wake colored in a new dimension of this person that I had lived with, that I had come from. I was surprised at just how many people he had touched with his life, relatively brief as it had been. I was astonished with my mother that summer of sickness and in the years after.  It’s the true contradiction of my parents’ relationship that my dad made his living arguing in South Louisiana’s courts but that my mom was the warrior who fought every day for his dignity, for whatever relief she could provide from the pain of his body’s failure, for him to stay with us as long as he could because she couldn’t imagine her life without him, our family without him.

And we are a different family now. A family who can laugh at the wrong joke. And we don’t really make sense without our context: that our dad is dead, that it was a whirlwind barrage of misery that seemed like it wouldn’t let up until it all of a sudden did and we were not better  for it or triumphant over it, but so much emptier because of it. And yet, my dad’s death is never the last word, not for him and not for me. Cheryl Strayed writes about losing her mother young, at 22, and she says it’s like an empty bowl inside of her that she has to keep filling over and over again. She writes in her column, Dear Sugar, that it’s not okay that our parents weren’t there and won’t be there for graduations and weddings and other life milestones. She’s right on both counts, my dad’s absence was a heaviness in my chest, a sorrow in between my ribcages that I carried for years and it’s not okay that everything I’ve done that makes me an interesting person that people want to know seems to have post-dated my dad’s life. But it’s not those banner days that are sad for me because I’ve realized that he is the reason that I accomplish anything at all. Being my dad’s daughter gives me the confidence to believe that I am worthy of great things, the boldness to try new experiences, and the tenacity that never lets me give up on pursuing my heart’s desires. It’s hard sometimes to know where my true north is, and I envy my dad the certainty that I imagine only a law student whose lifelong personal heroes are Abraham Lincoln and Atticus Finch could possess at age 25. But I have always been certain that I am best self when following behind his example, taking my happiness wherever I can find it, and sharing my life fully and honestly with the people I love, all of them my family, biological or not.

There’s a lot of power in how we identify ourselves, in how we choose to assimilate and understand what happens to us in life, especially our difficulties. In a book called Far From the Tree Andrew Solomon proposes that persistent, chronic illnesses can be claimed as identities and that in the process, they become things to celebrate instead of problems to be fixed. My dad never got the opportunity to call himself a cancer survivor, but I like to think that he’d be proud of you, Laura, and the way you’ve broken that old expectation by living, taking on the mantle, and challenging other young people to re-define what that term implies: how survivors look, how they sound, how they set and accomplish new goals, how they advocate and write and express their truth. (Although, I feel compelled to mention that identity is self-deterministic and Barbara Ehrenreich argues pretty convincingly for why we should accept and respect people who take issue with the “cancer was the best thing that ever happened to me” narrative in her book Bright Sided.) I, for my part, never felt that there was a place for me as a late-teenaged mourner, there was no easy plan to follow out of grief, no simply-discovered support group I could join. I thought that because I was eighteen and hurting that I was the only eighteen year old that had ever hurt in the history of the human condition. (Hah!) And though I know now that sentiment was never true, my belief in its accuracy at the time ultimately set me on a path towards healing that was internal and self-driven, a path that allowed me to define myself and my dad in opposition to the heartbreaking end of his life. Healing means that I live my life in a way that makes Dad proud. It means that cancer hasn’t won; not in my life, not in my dad’s, and not in my best friend’s either.

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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HPV? Not me! A Call to End the Stigma

So today’s blog post is going to be of a “sensitive” nature, and I’m bound to scandalize someone by posting about this. However, in a blog dedicated to discussing predominantly  young adult cancer issues, sex is bound to come up. And what better time than the day before the “sexiest” of all holidays — Valentine’s Day!
Over the past few years, several people I know were diagnosed with the Human Papillomavirus (HPV), a sexually transmitted disease that has been linked to several forms of cancer. The first moral of today’s post is that anyone can have HPV. Many women (and men for that matter) who acquire HPV are educated, successful and non-promiscuous. Many acquire it from their spouses, and some may even be virgins since the virus is spread through skin to skin contact. In recent years, HPV has gained some attention due to the development of the HPV vaccines, Gardasil and Cervarix.
Coincidentally, one of the reasons researchers have been able to link HPV to cervical and other cancers is because of the HeLa cells, which I discussed in my post about Henrietta Lacks in November. Henrietta was a 31-year-old young wife and mother when she passed away from HPV-related cervical cancer in the 1950s.  Because of the cells extracted from her cervix, researchers have been able to develop these vaccines to protect men and women against certain forms of HPV, including the four that are most often linked to cervical cancer. However,  it does not protect against many strains that do not cause cancer but have their own negative set of side effects. Also, there are several other strains that HAVE been linked to cancer that the vaccine DOES NOT protect against. In fact, the majority of people I know who have since been diagnosed with HPV, received the Gardasil vaccine beforehand.
A very kind, anonymous guest blogger reluctantly agreed to write this post for me about her first hand experience with an aggressive form of HPV. Her story has a happy ending because she was very punctual about going for her annual pap smear appointment. Which leads me to the second moral of this post, which is to please please please go to your annual check-ups. I hear/read stories every day from cancer survivors about how if they had waited a few more weeks to get their yearly cholesterol check/mammogram/pap smear/etc. done, they might not be alive today. Please don’t put it off. Make the sacrifices necessary to go to the doctor once a year. Many services exist to help people get these screenings done for free as well. I really hope people read this with an open mind and are able to learn something from this.

HPV? Not me!

A Call to End the Stigma

 Nearly 75 to 80% of sexually-active adults will be infected with HPV at some point in their lifetime. HPV has become an epidemic across the United States. Yet there is still little discussion about this pervasive virus. HPV is a virus that affects both women and men. If left untreated, HPV can lead to several different types of cancers, not just cervical cancer. The stigma must end. Women and men need to come together to fight this terrible virus and to prevent others from suffering and coping alone.

 When I was diagnosed with HPV, I remember feeling shocked and scared. I was diagnosed with high-grade cervical dysplasia, CIN III, the last precancerous stage before the cells become cancerous. At this stage, the cells must be destroyed to avoid turning over to cervical cancer. I struggled with the news, yet I felt uncomfortable confiding in anyone. Not even family and friends. Before I received this news, I felt invincible. I had always taken excellent care of my body, eaten healthy and exercised regularly. I also had received the Gardasil vaccine. What is most frightening about HPV is the fact that most strands of HPV, including the most aggressive strands, exhibit no symptoms. In fact, in 90% of patients, HPV will clear away on its own without any symptoms. In most cases, HPV can only be detected through regular pap smears. For me, it had only been a year since my last pap smear, but the HPV had already advanced to a stage that typically could take years to reach.

 I learned about the virus in the time I coped with the news. For me, research helped me feel informed and more comfortable with facing the treatment. To help spread awareness and to dispel myths, here are some answers to commonly asked questions about HPV.

 How is HPV transferred?

HPV is transferred by skin-to-skin contact. HPV is very contagious and can spread even without the actual physical act of sexual intercourse. It is possible for HPV to be transferred even if a condom is used. When it comes to HPV, the only “safe sex” is no skin-to-skin contact.

 How does HPV affect the cervix?

 HPV can cause normal cells on the cervix to turn abnormal. In most cases, the body will fight off HPV and the cells will go back to normal. But in some cases, the body is incapable of fighting off HPV, and these cells can become cancerous. It often takes years for cancer to develop.

 How long can a person be infected with HPV?

 A person can be infected with HPV for up to 10 years. Of course, during this time, the person may or may not know they carry the virus.

 What cancers can be caused by HPV?

 The most commonly known cancer that is associated with HPV is cervical cancer. Almost all cervical cancers are caused by HPV. However, according the CDC, the following cancers are also associated with HPV: 90% of anal cancers, 65% of vaginal cancers, 50% of vulvar cancers and 35% of penile cancers. A recent study also found that about 60% of oral cancers are linked to HPV.

 Demand an annual pap smear!

 An annual pap smear is the best way to protect against HPV-associated cancers. When HPV is detected early, doctors will work with you and monitor the virus to ensure it does not progress to cancer. Even if you are in a monogamous relationship, you can still be exposed to HPV because it can remain inactive in the body for up to 10 years.

 I share my story in an effort to spread awareness and to help end the stigma associated with HPV. HPV is about as common as the flu. Americans need to be more comfortable telling a sexual partner that they are infected with the virus, which can in turn, help prevent spreading the virus to others. Awareness can save lives. The problem with HPV is that too many people, especially men, do not know they carry the disease and can easily pass it on to others.

 An end to the stigma will also foster support groups for women and men struggling with the virus. Women and men facing aggressive forms of HPV should not have to turn to the Internet for support. When I finally confided in a few friends, it turned out that many of them also had HPV or had a friend or family member who had fought the virus. The treatments and surgical procedures for HPV can be very frightening and invasive. If you know someone struggling, reach out to them. Be supportive. Ending the stigma is the first step toward ending this public health crisis in the United States.  

 

The Battlefield

Caroline and I are from the same hometown and went to high school together, but I didn’t meet her until my freshman year of college. I honestly don’t remember ever not knowing that Caroline had had a tumor in the past, but I can’t recall ever having a specific conversation with her about it. I really had no concept of how major illnesses affect people’s lives later down the road. I never asked her a whole lot about it, and I naively thought that now that she was “cured,” her tumor didn’t play a role in her life anymore.

me and caroline

According to Facebook, this is apparently the only photo of me & Caroline together that exists. I’m in the peach on the front left. Caroline is the second down on the right. The others are also amazing people from LSU/Lafayette High School.

Little did I know when I met her almost eight years ago, that her experience and friendship would play such a large role in my cancer journey. Despite years of not seeing each other, she contacted me as soon as she found out I had cancer. She was a major source of comfort and wisdom, and helped prepare me for my radiation treatment. She also sent me a bloodstone to carry with me during my illness due to its rumored healing properties. I still keep it in my purse to this day.

Today, Caroline is a busy wife, mother, blogger, grad student and freelance writer. She wanted to share her story with y’all, so hopefully her experience will help even more people. You can follow her blogs at The Unlikely Housewife and the At Home Librarian.

The Battlefield

By Caroline Lee

By the time I was in high school, I had already lost a few older family members to cancer.  I also knew two girls who were diagnosed with brain tumors by the time they were 18.  By graduation, another female friend was diagnosed with a brain tumor.  

 And two days before I left for college, I joined the front line of battle against tumors.

 My Battle:

Discovering something was “wrong” was completely an accident.  It was the spring of my senior year of high school and I was discussing with a friend how perception affects us daily (because at 18, you know so much about the world).  As an example, I pointed out how things shift when you close one eye and then switch to the other eye.  It was at that moment when I realized that I could not see anything out of my right eye.  Being naïve, I thought I just needed glasses.  I know…ridiculous.  So I postponed saying anything to my parents or getting an eye appointment.  By the time I did, almost four months had passed. 

My dad came with me to the eye appointment.  Although I was 18, I wasn’t yet comfortable with taking over my medical issues.  Besides, I figured I’d need him to pay for a snazzy pair of glasses.  J  After some initial discussion with the optometrist, he decided to run a few field vision tests.  Rather than explain to you all of those various tests (there were at least ten), here’s how they all went down:

Doc: Okay, I want you to close your left eye and _______ (insert activity for the test).

Me: Nothing.  There is nothing there.

Doc: What do you mean nothing?

Me: It’s all black.  Everything.

Doc: Ok.  But can you see ____ ?

Me: No.  Let me explain this to you.  When I close my left eye, the whole world goes black.  Absolutely black.

Doc: Ok…what can you see?

Me: (sigh)  Black.  I can see a lighter area off to the left where the door is open.  But I can’t see the open door.  I just know that’s what it is from when my eyes were open.

On and on…

If my memory serves me right, I heard my dad curse under his breath a couple of times.  That’s when it started to dawn on me that this was not normal at all.

At the end of the tests, the doctor proceeded to inform me that my eyes worked fine.  That left one option: tumor.  On. My. Brain.

Three days later, I had an MRI.  Two days after that, I was told the MRI was normal.

The next day I saw a neurologist.  This time, my mom came with me.  Here’s how that went:

Neuro: (after checking my chart, my eyes, nose, mouth, and ears) So I believe that what you are experiencing is called optic neuritis and is a symptom of multiple sclerosis.

Me: What?

Neuro: Multilple Sclerosis.  (Enter exaggerated medical explanation to stunned 18 year old and her mother).

Me: So what does that mean?

Neuro: We’ll have to do a spinal tap to get a diagnosis.

Me: No.

*LESSON NUMBER 1: If you are told you need a spinal tap, get a second opinion.

The proceeding discussion that was held was in regards to where we would do said spinal tap.  He wanted to DO IT IN HIS OFFICE.  AN UNSTERILE ENVIRONMENT.  I put my foot down at that and refused.  Thankfully, my mom has a friend who is a wonderful doctor.  He did the spinal tap for me IN A STERILE HOSPITAL. 

Quack doctor…

At this point, I was freaking out.  That’s really putting it mildly.  I have never had an experience when I felt like my blood ran cold but that moment, it was like icicles piercing my body.  I was terrified.  I hate hate HATE needles.  I was supposed to be going to college in a few weeks on a piano scholarship to earn a degree in piano performance. 

All I knew about Multiple sclerosis was that you lose function of your limbs.  How would I graduate if that was the case?

All I knew about spinal taps was that the patients on ER always screamed and had to be held down. 

That was the first time I thought I might be dying.  Because this doesn’t happen unless you are dying.

The family friend who did the procedure did his best to keep me calm and talk me through it.  What I remember is pain and lots of tears.  I may have cursed at him too.  Ugh.

The quack doctor neurologist also ordered that I be put on 5 days of IV steroids and two weeks of oral steroids.  He said they MIGHT clear up my vision.

*LESSON 2: If you are told you need steroids, consider getting a second opinion.  ESPECIALLY if there are no concrete terms used.

For those of you curious about spinal taps and how bad those might be, here’s what my experience was.  From what I understand, there is a small percentage of patients who experience side effects.  One of those can be serious contractions of the muscles in the back.  Guess what I got?  Yup.  Every time I laid down, my entire back would contract.  I spent months crying in my bed at night because it would hurt so much.  There wasn’t much that could be done.  Muscle relaxers didn’t help.  Pain medication, heat, ice…nothing.  I would just have to clench my teeth and pray for it to go away.  Usually after an hour, I would either cry myself to sleep, or my spine would slowly relax little by little.

Fast forward a couple of weeks.  It’s Tuesday.  I’ve finished my IV steroids and am on my orals.  I was a freaking joy to be around.  I wasn’t sleeping, partially from the steroids and partially because I was terrified I wouldn’t wake up.  I had severe sunburn and acne.  And I had gained several pounds since starting the steroids.  I was covering as much of my skin as possible so that the acne wasn’t apparent.  Who gets acne on their arms?!  Or on their FEET?!  Thighs?! 

My mom had somehow gotten a referral to see a specialist in Jackson, MS.  Dr. James Corbett, a.k.a. my angel and quasi grandfather.  We were driving up to Jackson to see him when we heard from the neurologist’s office about my spinal tap.

Normal.

Son. Of. A. Bitch.

I can remember telling myself in my head during the three hours drive to just breathe.  It was a fluke.  Nothing was wrong.  All the tests said so.  Maybe I would just wake up and be able to see suddenly.  Maybe tomorrow…

We saw Dr. Corbett on Wednesday morning.  Here were his responses:

Angel Doc: Are you on any medications?

Me: Prednizone. (proceeded to explain why and quack doctor neurologist’s explanation)

Angel Doc: (pause) Caroline, those were just going to destroy your body.

Enter steroid raging…

Me (laughing while Angel Doc checks my reflexes)

Angel Doc: what’s funny?

Me: It tickles.  I don’t remember the last time someone did this.

Angel Doc: (sigh) (rubs bridge of nose…never a good sign) Caroline, if they had checked your reflexes, the doctor would have known you don’t have MS.

 If I were a naturally violent person, that would have broken my restraint.

After looking me over and getting some information from me, Dr. Corbett took my MRI film that I had brought (the original film from the initial MRI) and stepped into the next room.  Within thirty seconds, he had pin pointed the tumor.

I was dying.  I was sure of it.

My mom and I stood there as he calmly explained what the next steps were.  Even writing this now, ten years later, I’m trying not to cry.  That moment is so raw in my memory.   I just remember wanting to lay down and never get back up again.  I was done.

I would like to say that my reaction after I quit crying was a healthy one.  I would like to say that my positivity radiated out of me from day one.

It didn’t.

The truth is I immediately turned my back on the world.  I went home, cried in the arms of a friend for an hour, and then proceeded to go to a bar and get drunk.  I remember telling my favorite bartender that I had the worst day of my life and I wanted him to line up the drinks.  He did.  And I worked my way through six somethings…

I also started smoking.  For some reason, that seemed like a good idea.  It wasn’t.

And two days after my diagnosis, I moved away to college.  To a different state.  Where I knew NO ONE.

That is when the story changes (I promise this gets happier).

During the course of my first semester of college, a few key things happened:

1)     I was attending college at Ole Miss (HOTTY TODDY!…my LSU friends are going to kill me) and my appointments were all in Jackson.  Enter the Files family.  Jim and Patti accepted me into their family immediately.  Patti would drive the three hours up to Ole Miss to get me just to turn back around to drive me the three hours back to Jackson.  And then back to school.  To this day, I’m still very close to them.  They took me into their home and took care of me, through all of my appointments, and later, through my radiation treatment. 

2)     I was paired with a wonderful roommate named Jessica.  She made it her mission to keep my comfortable, happy, and, most importantly, grateful.  We came up with “appreciation” exercises so that I would learn to appreciate all of my senses, not just my sight.  This involved closing my eyes while I ate, staring at the stars for hours, listening to music with my eyes closed, etc.  Jessica kept me from the edge many times.  I owe her a great deal because of her continuous support and love.

3)     My family became super important.  My little sister, Candace, and I grew much closer.  My older brother, Crawford, taught me to laugh about the situation.  It drove my mom nuts that Crawford, my dad and I would make jokes about it.  But it felt SO GOOD to laugh!  My dad sent me a book: Tough Times Never Last But Tough People Do by Robert SChuller.  Whether you are a spiritual/religious person, I believe this book should have a place on almost everyone’s shelves.  I think my dad knew that I was starting to really struggle with depression so he had this book shipped to me.  It changed my entire outlook on my situation.  And my mom was always there to talk to me.  We talked on the phone regularly and she always checked in to find out how I was doing.  They were an important part of me staying sane. 

 I made it through my first semester of college with a 3.9.  Through all of the tests that I had over the semester, there was really only one concrete answer: I had a tumor on my right optic nerve.  As for whether it was malignant or benign, I was assured that it was most likely benign.  However, without a biopsy, there was no way to be 100% on that ruling.

In February, I moved in with Patti and Jim to begin over thirty days of radiation.  Five days a week.  I had a great oncologist and my team was fantastic.  I had the same nurses every day and they were a joy. 

Looking back, it was my time in radiation that really cemented my outlook on what was taking place.  I could have stayed home and been depressed and felt sorry for myself.  But here I was, 19 years old, sitting in a waiting room with a bunch of people who DEFINITELY HAD CANCER.  One of them, Mr. Johnson, was 74.  He was undergoing his fourth round of chemotherapy in 15 years.  And he was never shy to tell people that they should smile…because if he could smile while puking for the third time in two hours, you could too. 

Seeing the kids in the pediatric oncology ward also made a dent in the “my life sucks” attitude.  They were playing and laughing.  I wasn’t…and I got to leave the hospital.  They didn’t.    

Side effects of my radiation: nausea, vertigo, insomnia, skin burns, and hair loss.  But I’m not going to dwell on it because it was all worth it.  Also, I was actually very proud of my hair loss.  It was like a battle wound that I was ready to show off. 

“Do you want to see where I got shot???”  Sort of like that.

Caroline 1

All of the hair in this bald spot came out at ONE TIME. I was so excited that I had Patti take this picture immediately!

 Within a year, the tumor’s size had shrunk considerably.  Six years after radiation, my tumor was gone.

 The Aftermath:

So now what?

To say that my experience with my tumor was life-changing would be an understatement.  I can’t think of an aspect of my life that wasn’t altered in some way.  this experience made me more aware of my behavior and my actions.  Before, I was a much more superficial person.  I was also really busy trying to be friends with people who weren’t really trying to be friends with me.  I gained a completely new definition of friendship and have created friendships over the years that I’m sure will last a lifetime. I’ve worked to foster a deep sense of compassion, which I think impacts my decision to become a librarian.  And in many ways, I think this experience cemented my relationship with my little sister.

Along the way, there are a few things that I feel really helped me.  Maintaining an attitude of positivity has been imperative.  It was something that my support system and my treatment team impressed upon me.  Doing appreciation exercises has always been a great way to remind myself of what I do have.  Do I ever feel down?  YES.  Do I ever cry about it?  YES.  But the pity party can only last so long.  I’d rather laugh…which leads me to the next point.  Humor is so important.  I named my tumor “Sheila”.  Why?  It was funny at the time.  My brother and I would crack jokes about my half blindness.  It may come off crass to some but the laughter was such a release.   Also, for those in the a similar situation, GET A SUPPORT SYSTEM TOGETHER IMMEDIATELY!  I cannot stress this enough.  I don’t want to think about what I would have been like had I not had the friends and family that I had then. 

Find things to get excited about.  You know what I got excited about on days when I was so drained from radiation I couldn’t move?  Law and Order SVU.  Give me Elliot Stabler any day and I’m thrilled.  I watched that show for HOURS.  And loved every second of it.  Patti still jokes about how many hours of that particular show I watched.

caroline 2

Patti and I this past fall with our “babies”.

 I also laughed when my hair fell out.  I was actually excited about it.  I often found myself rubbing my bald patches.  I found it soothing when I was stressed or anxious.  In fact, when I felt hair starting to grow back, I was a little bummed out that I wouldn’t have my “worry stone” to rub anymore (see?  THAT IS FUNNY!).
For me, Spirituality has always been a big part of my life.  Other than having faith that I would be ok, spirituality didn’t really play a big role in my life during my treatment.  It was after that it really came into play.  I went through such an emotional roller coaster both because of the treatment and because of a warped religious group I became involved with (that is a WHOLE OTHER STORY).  Over the years, my spiritual growth has grown exponentially and I believe that much of that has come from my growth as a person after the tumor.  Sort of B.T. (Before Tumor) and A.T. (After Treatment).  It’s two separate phases of my life for me. 

The bloodstone that I wore for months during radiation and after was my constant reminder of my spiritual life though.  It was given to me as a gift by the owner of a spirituality store.  Bloodstones (in certain spiritual groups) are seen as purifiers of the body, mind and spirit.  The generosity of this person was so touching.  The bloodstone reminded me that we are all connected in some way.  And it also gave me something to focus on when I needed a positive reminder.  I give them out now to people I know may need that little reminder as well.  Every now and then, when I need that reminder, I put mine on. 

Also, before I started my treatment, I saw a Cajun treator (treater).  He is considered a very successful healer in the Cajun community.  He reminded me to have faith in God and to have faith that I would be healed.  I won’t go into much more detail about this experience other than to say it was deeply personal and awesome. 

One last thought on spirituality…my experience taught me that this means something completely different to every individual.  Finding what it means to you can be completely enlightening and invigorating, whether it’s in an organized religion, in nature, or in a belief that you are a strong individual.  Find what it is that grounds you inside you.  I felt like I found my soul through this experience.

It’ll be ten years this August since my diagnosis.  The only lasting physical effect of this whole experience is that my right eye no longer tracks correctly.  In other words, I look cross eyed sometimes.  To be honest, my vanity has taken a hit from that.  But whenever I close my left eye, I can actually see shapes and colors.  It’s still a lot darker than it should be but the fact that I regained any vision is a miracle in itself (seriously…I was told this would not happen). Other than that, there are only two issues that have come up post-tumor. One, I can’t be treated with hormones.  EVER.  My tumor was hormone receptive.  I have a hormone condition (PCOS) which is sometimes treated with birth control to decrease the symptoms.  I don’t have that option.  I can’t take birth control at all.  Even most IUDs are out of the question.  The other issue is that I can’t play certain sports.  I still don’t understand this correlation but apparently, it’s just a bad idea for me to get hit on the head.  Although…I feel like that’s a general rule of thumb but I guess I’ll play along with the doctors’ orders. J

Then, there’s the motherhood aspect of my life.  Becoming a mom completely flipped my world upside down.  I worry that my children will inherit this tendency to random  health conditions.  Fortunately, my husband is my balance.  He keeps my paranoia in check all the time.  I have to remind myself that there isn’t a boogeyman behind every corner.  Then again, I don’t know if this response is necessarily about the tumor or just becoming a new mom.  I tend to go back to my rules of support, humor, excitement and appreciation if I can feel my emotions getting out of control when it comes to my son.

Caroline 3

Me and my boys at the beach.

The truth is that although my tumor is gone, I know it can come back.  If it comes back in the same place, there’s not really much that can be done.  Your optic nerves can only handle so much.  Surgery is not really an option because there is a huge risk that I could go completely blind.  If it comes back in another area…well, that would be a whole other situation. 

I had a pretty big shake up last year.  One of the girls that I mentioned passed away from an undiagnosed second tumor.  What helped me get through this was having a doctor who is INCREDIBLY supportive and listens to me.  Although some doctors may have assured me that this wouldn’t happen to me, my new doctor immediately ordered a full brain scan so that he could have proof to back up his assertion that I didn’t have another tumor.  My husband, Eric, is also the biggest cheerleader and supporter I have ever known.  He held me while I cried out of fear, grief, and anxiety.  He talked me through the really bad moments and he is always there for me.  He has become the central figure of my support group and is fiercely protective of me. 

In the meantime, I’m slowly becoming involved in brain tumor awareness and support groups. I’m involved in support groups online (Meningioma Mammas is one) but only in the chat rooms.  I’ve also run a 5k in support of brain tumor awareness and research.  I’m hoping to become more involved in the future but I have to finish grad school first…and then on to saving the world!

Stronger

Today is Victoria‘s second “cancer-versary.” We have never actually met in person, but I consider her one of my close friends now because of all the love and support she’s provided me since I was diagnosed. My friend, Amy Brittain, worked with her at the Star Ledger in New Jersey and connected us almost as soon as she found out I had cancer. Victoria set an amazing example of what someone can accomplish if they are vocal about their experience and committed to helping others. She is my hero.

St. Martin Portrait (2)

The beautiful Victoria.

Today, Victoria continues to write for the Star Ledger and blogs at BreastCancerat30.com. She also serves as the New Jersey State Leader for the Young Survival Coalition, an organization dedicated to helping young women under 40 face breast cancer and one that she called her “cancer life line.” She said that she wouldn’t have survived the first few weeks of her diagnosis mentally without their support.

She has no clue I’m doing this (until she reads this entry of course), but I thought long and hard about getting her something to mark her cancer-versary. I thought about roses, or a cookie bouquet, or a gift card. But nothing seemed right. Instead, I decided to use the money I would have spent on her gift, and donated it to the Young Survival Coalition in her honor. Please read her guest blog entry and consider doing the same.

Stronger

By Victoria St. Martin

Two years ago today, life, as I knew it, changed forever.

“There’s ductal carcinoma in your left breast,” was first thing the doctor said.

The next words that came out of her mouth were: “It’s breast cancer.”

She said it, I know now, to eliminate any confusion, to clarify the meaning of that scary, clinical word “carcinoma,” to make sure that I didn’t have any doubt about the challenge that lay before me. But at the time the words felt harsh, cold, and hollow – like someone was doing their best to break my heart.

I was 30 years old.

And I just been diagnosed with a disease that nearly everyone told me I was too young to have.

In the United States, about 70,000 young men and women age 15 to 39 are diagnosed with cancer each year, and for us young survivors, the experience is somewhat different. As a 30-year-old, I was one of the roughly 10 percent of young women in this country who are annually diagnosed with breast cancer — and faced challenges, such as infertility questions, that many of my fellow patients simply didn’t.

The stares were the worst. People were just confused. They wondered (often aloud) why in the world I was in an oncologist’s office, waiting for an MRI or sitting at a support group. Was it my mom who was getting the chemo, they would ask? Breast cancer must run in your family, they’d say. When I would smile politely and tell them no — the chemo is for me, or there’s no prior history among the women in my family — they would scoot farther away from me. Or stop holding my hand as if breast cancer was contagious.

But a funny thing happened in between my mastectomy, egg retrieval, chemotherapy and losing my hair. I saw how resilient the human spirit is — and I’m not talking about myself. I’m talking about my innermost circle that pulled me through. My mom sat with me during every treatment, my guy helped me out of bed, my friend took me to brunch every Sunday and a co-worker organized 16 other colleagues to serve as in-home chefs during each of the weeks that I was on chemo.

StMartin-byFrances_Micklow (2)

Victoria during her treatment

People surprised me at every turn – with their kindness, with their generosity, with their patience. And every time I had a not-so-pleasant experience — like when the last bit of my eyebrows nearly disappeared or someone told my bald-self I was “too young for breast cancer” – it was as if the Universe blessed me with a beautiful one to take the place of it, something to wipe away the bad memories and tears.

Since then, my hair has grown back. And every now and then I have flashbacks of the day I was diagnosed. They say having cancer is akin to experiencing a traumatic event like fighting in combat, and I think they’re right — sometimes it really is harder on the other side of it all, then it is while living in it.

But I try to live my life as my survivor sisters would. I think of my friends who didn’t make it to 32, who didn’t go engagement-ring shopping or see their sister have twin baby girls — for those things, I know I am one of the luckiest women in the world and I celebrate each cancerversary like it’s another birthday, another chance. And when I’m not working as a journalist, I try to make sense of who I am as a young cancer survivor by writing and connecting with as many people who were in the same boat as I was; it just makes me feel like this whole ordeal wasn’t all for naught.

And for those who are not lucky enough to have the support system that I had, I try to pay forward all the kindness and generosity and patience that I received. Over the past couple of years, I’ve helped my survivor sisters out of bed after their surgeries. And sat with them during their chemos. And cried with them on the phone after their diagnoses. To me, it’s the duty of all of us who are able to help lift up our sisters.

I recently reconnected with a long lost relative, and quickly learned that his renal cell carcinoma (there’s that word again; it’s called kidney cancer for the rest of us) had spread to his lungs. I went with him to a follow-up visit last week and we went through the drill that survivors know all-too well: We asked questions, took notes, waited for doctors, and tried to tell funny jokes while we ate bad hospital food.

And at some point, my relative — who’s 83 — starts telling a story about how one snowy day while walking through the woods, he saw a creature that he swore looked like Bigfoot. He said he tried to hide behind a tree but the creature’s large eyes followed him. So he stood right where he was. After a while — he reckons it wasn’t much longer than a minute — he watched the thing turn around and run away.

And you know what? We can all stare our creatures in the eye, too. Whether that “creature” is cancer, a divorce, losing a job or some other life challenge, we can stand our ground.

And we’ll be stronger because of it.

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.

puppy frasier 2

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!!!!