I Survived Cancer and Then Donated My Hair

About a year ago last summer, I decided to take a last-minute, cross-country road trip with one-year-old twins to see family prior to moving to South Korea. One morning I woke up in my childhood bedroom in Lafayette, Louisiana and decided it was the day I wanted to fulfill a long-term goal I had held since I shaved my head during chemo almost exactly three years prior: I donated my hair. I called around to my friends and asked for a salon recommendation since it had been several years since I lived in Lafayette. A few people recommended Morgan at Spa Mizan, and she miraculously had a cancellation and could take me that day. What I didn’t know is that she was also a young adult survivor of cervical cancer, and was very pumped to help me achieve this dream. She took her role very seriously, and carefully read through the hair donation requirements before measuring out my hair. She ultimately decided to maximize the length of my hair donation by dividing my thick locks into two pig tails. Fortunately, my childhood best friend and occasional guest blogger, Allison, came with me to document the event and you can see the results here. The three of us had all been affected by cancer very directly in different ways, and I was really honored to be able to share this experience with them.

Although I chose the day spontaneously, I took the decision to donate my hair very seriously. One of the first things I did was choose an organization to donate my hair through. A lot of people have heard of the organization, Locks of Love, which donates hair systems to children with long-term hair loss, primarily benefiting children with alopecia areata. However, several organizations are out there that accept hair donations. A great list is available here. All are great organizations, so if you are interested in donating your hair, my advice would be to research their missions and requirements to decide which one fits your needs best.

I ultimately decided to donate through Pantene’s Beautiful Lengths program for a few reasons. The main reason is because they work with American Cancer Society specifically to provide free wigs to women with cancer. Many of my friends and their loved ones had received hair replacements through this program. I really felt called to support them since I had witnessed the benefit of their program firsthand, and I really wanted my donation to benefit a cancer fighter. My other reason for supporting the program was much more practical. The Beautiful Lengths program only requires an 8-inch pony tail, while most other hair donation charities require 10 or 12 inch pony tails for donation. Since I am a pixie girl at heart and my children love to tug at my hair, I knew my patience for growing out my hair was going to be minimal – so planned accordingly. To my surprise, I ended up with two 10-inch pig tails to donate, but ultimately decided to donate through Pantene’s Beautiful Lengths program because of their service to the cancer community.

Once you choose the program you want to donate through, it is important that you follow their recommendations for taking care of your hair while you grow it out. According to a rather outdated New York Times article, as much as 80 percent of hair donations to Locks of Love in 2007 were unusable because people didn’t follow their requirements. If you really want your hair donation to go toward someone in need, it requires a long-term commitment. You generally have to avoid coloring your hair during the time it takes to grow it out (in my case 2.5 years) and maintain it with regular trims and conditioning. Pantene provides a great resource on how to prepare your hair for donation here. If you are interested in hair donation, please do your research and make sure you are willing to make that commitment. If you aren’t able to participate because your hair is color-treated or for another reason, there are many ways you can participate, such as making a monetary donation, or volunteering to create awareness for the program by recruiting participating salons and/or hosting hair donation events.

I really loved growing out my hair and felt elated by returning to my pre-cancer, pixie look. In the process I hope I was able to create some awareness, both for hair donation and adolescent and young adult cancer issues. I hope this blog post will provide some great resources for anyone considering hair donation in the future!

 

 

 

 

 

 

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Two important reasons…

So a lot has happened in the past 20 months or so since my last update. While I always assume that the people reading this are my friends and family and know what is going on in my life, it came to my attention that when someone who blogs about cancer suddenly stops blogging it can be a bit concerning to any readers that aren’t “in the know.” I am very happy to say that I have two very important reasons why I haven’t been updating.

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The announcement for our “two important reasons.”

My husband and I welcomed twin baby boys, Owen & Nathaniel, to the world on April 17, 2014, almost two years to the day of the start of my cancer journey. I found out I was pregnant in August 2013 and that I was expecting twins on October 1, 2013 when I was 10 weeks along. We actually caught the surprise on camera. My sister, Sarah, came with me for my first ultrasound and filmed it for my husband who was on Army field duty that week, so you can watch that beautiful surprise here.

Initially I wasn’t able to blog because I very quickly started exhibiting symptoms of hyperemesis gravidarum (HG), or “that thing Kate Middleton gets when she’s pregnant,” as I usually tell people. Basically I had very severe all-day morning sickness and lost a lot of weight in my first trimester and had to go to the ER a couple of times. It’s more common in multiples pregnancies, however, I don’t want to scare any expecting twin+ moms out there, the odds are still in your favor that you will not have to struggle with it (I can’t find the figure, but I believe I read it occurs in 6 percent of multiples pregnancies vs. 1 percent of singleton pregnancies.)

To help manage the symptoms, I actually took Zofran for a few days, which is a drug most often given to cancer patients undergoing chemotherapy. For whatever reason, possibly because of my history on the drug in the past, Zofran didn’t work well for me. I have heard you can develop tolerance to it over time, so it becomes less effective. However, my OB suggested I take Unisom (normally an over-the-counter sleep aid) along with vitamin B12 at night before bed, which worked wonders (as long as I remembered to take it.)

I preface this by saying that I am not giving out medical advice here, but if you are a cancer fighter, expecting mom or anyone else struggling with nausea, you may want to ask your doctor if Unisom might be a good option for you. I loved that I could run to the drug store and get it over the counter without a prescription and that it was pretty affordable. Also, if you are an expecting mother please be sure to check the labels, the Unisom that has doccylamine succinate as the active ingredient is pregnancy friendly whereas the Unisom with diphenhydramine is not rated safe for the first trimester of pregnancy. I will also say that since this is a normally used as a sleep aid, you will almost certainly be groggy. I was able to reduce my dose to half a pill at night before bed and was functional the next morning with minimal or no nausea. Medicine affects everyone differently though, so you might feel up to driving/going to work/etc. on this medicine, you might not. Just see how it makes you feel and keep communicating with your doctor about what is or isn’t working for you.

Once we found something that helped my HG symptoms, my pregnancy went remarkably well. I delivered at 38 ½ weeks by scheduled C-section due to one of the babies being breached, but never had to be hospitalized or put on bed rest before that. I did have to start working from home and limit my driving and errands about six weeks before giving birth, which is around the time I was measuring the equivalent of a woman pregnant with a singleton at 40 weeks, which is normally full-term and when women pregnant with twins are more likely to go into labor early (which really makes sense.) I also had to go to the doctor starting at that time for twice a week monitoring to make sure I wasn’t going into pre-term labor.

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My belly at 38 weeks. I was measuring somewhere around 44 weeks pregnant at this point.

So, long story short, Owen was born at 12:43 p.m. on April 17, 2014 (Holy Thursday) weighing 7 lbs 7 oz and Nathaniel was born at 12:44 p.m. at 6 lbs 7 oz and we were able to bring them home on April 20, which happened to be Easter Sunday and also my two-year anniversary of the trip to the ER with chest pain that marked the beginning of my cancer journey. No words exist to described how incredibly blessed I feel to change that day forever in my mind from the anniversary of one of the scariest moments in my life, to the day I brought home my baby boys. Having two beautiful, healthy and happy baby boys so soon after cancer treatment was a blessing and privilege I never thought would be mine. I really thank God for all of his blessings in our lives, and I thank everyone for their prayers and support over the rollercoaster of the past few years.

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Owen (left) & Nathaniel (right) at the hospital.

That day was exactly 10 months ago, and Owen & Nathaniel are now crawling, standing, giggling and otherwise normal kids. They already say “Da Da” like its going out of style, and I hear the occasional “Ma Ma.” I expect they will be walking in the next few weeks, but only time will tell. Since that point, I went back to work for about five months and then became a stay-at-home-mom in January, when I left work to relocate with my family to Virginia for my husband’s military career. As I settle into this new life, I am not exactly sure what the future will hold for this blog, but I do have a few more posts up my sleeve related to pregnancy and parenting as a cancer survivor (and otherwise), so stay tuned for more entries!

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I don’t think we are in Texas, anymore!

Milestones: My Half-Marathon Experience

Thursday, July 11 was a major milestone on my cancer journey: I had my chemo port out after more than a year. When I would talk to people about it leading up to the procedure, they were so excited because the port is often considered the symbolic end of the cancer journey (though its never really over.)  I was surprised at their reaction at first because it didn’t seem real for me and I had trouble sharing their excitement. The port extraction just felt like the last thing on a long to-do list related to cancer. A major part of my lack of enthusiasm was the anxiety of having another procedure done.

My oncologist actually suggested I get it taken out in March, but I was feeling really overwhelmed at the time. I really wanted to get back to a “normal” routine with work, fitness, life, (and be in the millions of weddings I was in this year without having a open wound going on in the photographs) and surgery was just not a part of that equation for me… even if it was for a positive reason! I was also just generally adverse to being cut open in any way… however, I am happy to report that having a foreign object taken out of your body is apparently much easier than having it put in (at least in my case it was!) I was on significantly less sedation for the procedure itself, so I didn’t get sick afterward and I was much less sore. I still spent the next four days laying on my couch and groggily watching TV, but I think that had a lot to do with the cold I developed the day before surgery than the procedure itself. I am also excited because I am only restricted from swimming and working out for a week as opposed to several months like last year. The incision itself is still sore and itchy, but life is otherwise pretty much back to normal.

One of the reasons I’ve been so slow  to blog is because I’ve been out there “living it” as the young adult cancer community loves to say. My last post updated through Memorial Day weekend… and June was no less busy and exciting than April & May! I absolutely love the summer time and I wasn’t able to enjoy it at all last year. Surgeries + chemo + radiation = a lot of water & sunlight restrictions… which pretty much limits most fun activities in Texas.

June started off with a  bang as I hopped onto a plane to San Diego with my team-in-training teammates for the Rock N’ Roll San Diego half-marathon. As I have mentioned on here a few times, my sister Theresa, also signed up for the race with TNT and met me there. Neither one of us had a lot of time to research the area, but we both quickly fell in love with San Diego. The weather is pretty much perfect year round, the food is superb and there were plenty of historic sites … including a couple of ghost tours (which I am pretty much obsessed with!)

My friend from childhood, Megan, also did the race with me. When we got in on Friday, we all met up at the expo and one of the things we did was stop at the Delete Blood Cancer booth who were there to register bone marrow donors. I’m permanently deferred from donation due to my lymphoma diagnosis, however, both Megan and Theresa became my heroes by registering. I tweeted this pic and was retweeted by Delete Blood cancer, it was pretty bad ass.

Delete Blood Cancer

The next day we took the opportunity to visit the San Diego Zoo and met up with my dad’s cousins, who we hadn’t seen in about 13 years. Pretty much the only thing I knew about San Diego was the zoo, so we just had to go there… much to my coach’s dismay since we were supposed to stay off our feet as much as possible before the race… oh well! When in San Diego… go see the zoo! It was pretty awesome. My favorite part was seeing the Galapagos sea turtles! We were close enough to pet them but they were having none of that. I was amazed not only by their size, but because some of them had been alive since before Abraham Lincoln was president!

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That evening we went to the Inspiration Dinner for Team In Training which was a really incredible and unique experience. As you walk into the banquet room, all the coaches and mentors from around the country line up and cheer everyone on. Many people reached out to me and patted me on the back or gave me high fives, some because they knew I was a survivor and others just because! One of the proudest moments for me is when they asked people to stand up if they were survivors, and to stay standing if we were also participating in the race, and to keep standing if we were participating and also an honored hero. I was one of maybe only five or six others who stayed standing the whole time in a room of about 1,500 people. It was very surreal.

One of the speaker’s has a father who passed away from blood cancer and a son who is here today due to the advancements in cures funded by the Leukemia & Lymphoma Society and TNT. The whole evening really shot home to me why we do the things we do. Team In Training folks had raised an outstanding $4.5 million for this event alone! I was so proud to be a part of that. There was also a nice bonus surprise because it was at the Inspiration Dinner that the race director announced that the Rock N’ Roll series was introducing a bonus medal for charity runners… which meant we got one but TWO medals if we finished the race the next day instead of just one. I’m all about the bling so I was super stoked!

Spoiler alert: I finished the race and this is what my rockin’ medals look like!

It was important to remember the reasons we signed up for TNT the next morning because we woke up dark and early at around 4:30 a.m. to catch the buses with our respective chapters. However, we were all so caught up in the moment and charged for our race, I don’t think we cared a hole lot about the wake up time. When we got to our corrals (many hours later) I felt the need to take a lot of obnoxious photographs. The race happened to take place on National Cancer Survivor’s Day on June 2, so I also felt the need to post all these photos across various social media declaring how bad ass I was for doing a half-marathon and being a cancer survivor (I am not egotistical at all…)

They generally are some version of this:

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Megan & Theresa were much cuter/calmer than me.

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There were also a ton of people there, about 30,000.

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You can get a vague impression of the huge crowd from this photo.

The race itself went surprisingly well. Theresa & I stayed together almost the entire time. I’m a walker and Theresa generously decided to walk alongside me so we could have the experience together. However, there were enough epic downhill stretches that we decided to run a few (I’m more willing to run if gravity is on my side doing most of the work!) The weather was absolutely wonderful and the temperature was in the 70’s the whole way. The San Diego folks had chairs set up along the race cheering everyone on whilst drinking at 7 a.m. It actually made me feel like I was back home in Louisiana for a Mardi Gras parade. Some folks even had signs that signs that said, “Worst parade ever.” At this point I was focused on staying ahead of the time limit, so there was no time to take photos for documentation purposes. Toward the end of the race I was feeling more confident that I would easily make it across the finish line with time to spare so I stopped to take a few photos of the course.

Theresa, Megan and I all fundraised as part of Team Jackie in honor of our teammate’s sister Jackie Sharp who passed away last year from leukemia. It was very motivating to see this sign toward the end of the race.

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I’m not sure why I felt the need to take a picture of the 12 mile marker and no others, but I did! This was at the end of a pretty long downhill stretch and Theresa & I were both a little woozy.

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In the end, we both made it across the finish line RUNNING and holding hands at 3:48:03. The folks taking photos didn’t snap a great shot of this at all, but it was pretty amazing. I technically beat Theresa by one second, and I have a feeling this is an achievement I will never accomplish again!

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I also thought it’d be cute to bite my medal like an olympian… it wasn’t.

All jokes aside, I cannot express enough how important it was for me to accomplish this goal. Being able to finish a half-marathon less than one year out of treatment, on National Cancer Survivor’s Day, as a way to raise awareness and research funds in honor of people like Grant, Jeannie, Brent, Jackie, Jay, Sam and all those who have fought cancer … was incredibly symbolic and an emotional experience for me.  The whole race really just made me feel like, “I’m going to be okay.” I became teary on more than one occasion passing signs with photos of people the LLS had helped using the funds TNT raises. A survivor herself was near the finish line holding a sign that said “I’m here because of you!”

I am so happy I chose to do Team In Training and I recommend it to anyone who is looking for a way to train for an endurance events. TNT is designed to be accessible to people of all fitness levels. You can choose to walk, run, tri, hike or bike for a variety of distances.  If you are looking for a way to support TNT, I am very proud to announce that my friend from grad school, Becca, has chosen to join TNT and train in my honor for the Brewer’s Mini-Marathon in Milwaukee this September. You can follow her progress and learn more about her training at http://pages.teamintraining.org/wi/brewmara13/wendler.

In my next entry, I will update you on some of the others shenanigans I’ve been up to!

Six Months Cancer Free!!!

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

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

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

PT Scans and Mission Moments

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

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

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

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

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

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

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

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

One of the coaches sharing her story about Jay.

One of the coaches sharing her story about Jay.

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

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Teammates during Mission Moment

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

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

Laura mission mile

I mean, really?

Rene looked awesome though.

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My husband is much more photogenic than I am.

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

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

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

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

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

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

Grant and Jeannie

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

Brent Mesquit

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

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

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

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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!

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!!!!