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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Frequently Asked Questions

One of the biggest blessings throughout my cancer journey was that we were located in the Austin, Texas area when my diagnosis happened. Austin is a notoriously high young adult population area and is also home to the LIVESTRONG Foundation and several other great oncology treatment, research  and advocacy organizations. I really found that I had a lot of age appropriate resources and information available to me, that many of my counterparts in other areas did not. Access to fertility preservation resources is probably one of the most important issues that differentiates the young adult cancer community from everyone else. For those that do not know, many types of chemotherapy and radiation treatment can negatively affect the body’s reproductive organs in both men and women. Ever since I announced that I was having twins, I received a lot of questions from people about how I got pregnant, how long it took me, whether my twins were fraternal, whether they were “natural,” whether twins run in the family, etc. While a lot of these questions come with the territory of having twins, because I am a cancer survivor and discussed my fertility journey publicly I think it attracts even more questions. Which is why I thought it was the time to revisit the topic of fertility and pregnancy from a cancer survivor’s perspective. I personally do not mind these questions (depending on the setting, use common sense people) because I made a choice to discuss these issues very publicly when I was going through cancer. I also know that people’s intentions are usually not malicious and I also want to make sure people who are going through infertility issues feel like they talk to me and ask me questions if they need to. However, I will preface this by saying most parents of multiples do not feel the same way, so I don’t encourage anyone to bring this up with others unless they have expressed a willingness to discuss it (and there are about 5 million blog posts out there about why you shouldn’t.)

I have discussed my fertility preservation experience quite a bit on my blog, and also spoke about it at a Leukemia & Lymphoma Society fertility forum a couple of years ago (see June 2012 and March 2013.) To recap, I underwent embryo preservation through invitro-fertilization prior to having chemo in June 2013. I also took lupron shots for the remainder of my chemotherapy and radiation treatment, which shut down my ovaries during that time period. Although originally designed for men undergoing treatment for prostate cancer, lupron use in women undergoing cancer treatments actually can help preserve ovarian function. I actually would like to segue here and just say one of the reasons I don’t get into the whole “which disease deserves the most research funding debate” is because of things like this. Many therapies designed for one purpose, can actually have unintended benefits for other purposes as well. The human body is extremely complex and amazing and I won’t pretend like I know better than someone else by saying what research we should and should not support.

Anyway, long story short, lupron worked for me. I was given the “green light” to start trying for a child six months after I ended radiation treatment. From what my oncologists told me, this was a pretty short time-frame and that one year is a more standard recommendation for people in remission from Hodgkin’s Lymphoma to wait before trying to conceive. I was very blessed my diagnosis was caught early, so I had much lower chemotherapy and radiation exposure than the average Hodgkin’s patient, which is why we were able to start trying sooner. However, many people are advised to wait much longer, or even forever, before trying to conceive. How treatment affects fertility is really very dependent on the diagnosis, the treatment received, the length of treatment or even just how that particular individual responds. Also, the damage done to the body during treatment can be so extreme that they physical cannot conceive and even if they are able to conceive, they are advised not to due to a variety of possible health concerns. And some of it is still a mystery, there’s just not a ton of research in this area yet.

I found out I was pregnant about six months after receiving the “green light,” which was just long enough for me to get extremely anxious and concerned. I think its common for survivors to feel like they are waiting for “the other shoe to drop” and I would think to myself that maybe this was it. I wouldn’t be able to get pregnant. The month I found out I was pregnant I went in for a check-up with my fertility specialist who insisted everything looked great. A few days later I found out I was pregnant. When I found out it was twins 10 weeks into my pregnancy, I was incredibly happy but also extremely shocked. As I mentioned in my blog previously, a psychic I went to at Voodoo Fest in 2006 predicted I would have twins and I would occasionally joke about having twins after that, particularly after we went through IVF, but I never genuinely believed it would happen for us. It truly was one of the happiest days of my life. However, I will say amid the joy, there was also a lot of anxiety. One of my first thoughts was “Oh my gosh, now I have two of them to worry about!” You don’t have to be a cancer survivor to know that there is a lot of fear that comes with being pregnant. With twins they pretty much tell you upfront you are at higher risk for almost every possible complication. As a cancer survivor, I was at higher risk for even more complications. Whether it is statistically true or not, I felt like my chances of something going wrong were  infinitely higher than average, and I was extremely scared that something would happen to one or both of my babies, that we would find out my body was unexpectedly damaged from chemo and  wouldn’t be able to handle the stress, and about a thousand other doomsday scenarios ran through my head.

I also felt like I didn’t deserve so many amazing blessings, especially in such a short time period. I really look back on those early months and realize there was a lot of survivor guilt at play. Why am I still alive and others aren’t? Why was I fortunate enough to have great health insurance when others are hundreds of thousands of dollars in debt with medical bills? Why was I blessed enough to pay for IVF AND get pregnant without assistance? How is it fair I got pregnant so soon when others can’t? Why am I so lucky to have TWO healthy babies when so many people can’t have one? How is it fair I am already out of treatment and PREGNANT when people who were diagnosed before me are still in the middle of their fight? Why is it fair that I have a job? And benefits? etc.  There was also anger AT THE GUILT. I just want unadulterated happiness DAMMIT, why do I have to have all of these OTHER FEELINGS swirling around. So many paradoxical emotions existed and its really just hard to explain to someone unless they have been there too. All I can say is I gave it to God, and I got through it. I accepted that this was my journey whether it was fair or not.

At the end of the day, it is the way it is. I had an amazing twin pregnancy. My kids were full-term, healthy, had no nicu-time and I am still healthy. I did not have a stroke, I did not have a heart attack, I did not have a blood clot or preeclampsia or any other thing I was convinced would happen. I was lucky. I was blessed. And I am extremely happy.

So to answer some of those FAQs:

Are they identical or fraternal?

Fraternal.

Are they boys or girls?

Boys.

Did we use fertility assistance?

Obviously this whole post is the answer, but the short answer is no. However, I would not be surprised if the fact that I had been on lupron did  cause me to hyperovulate (release more than one egg) when my ovaries came back online. According to my doctors, my past treatment should not have played into affect, but its one of those things that not a lot of research exists for. My body went through a LOT in a short period of time, and there’s no telling how those experiences may have affected my ovaries. I have run into a lot of people who have had twins without assistance after prior fertility treatments, so it does happen, but current research says there is not a cause and effect relationship.

Do twins run in the family?

For the record, identical twins (according to current research) just happen randomly and do not run in the family. Since I have fraternal twins and they are cause by hyperovulations which can be passed down through the mother’s side of the family, it is possible there is a family connection. At the time I got pregnant, I actually thought that twins did not run in my family. However, recently we found out there were quite a few twins on my great-grandmother’s side of the family and for whatever reason, two other cousins from that branch have also had fraternal twins recently, even though twins haven’t occurred for several generations prior to our’s. So it is possible they “run in the family,” and I would have hyperovulated even if I never had cancer.

What are you going to do with the embryos?

I don’t get this question often, but it is the hardest one to answer. It’s honestly not something I can discuss at this point because we just don’t know yet, and honestly I might never want to discuss it publicly. Will we want more kids, will we not? Will I be able to get pregnant again? All these things remain to be seen. However, for anyone else who is in a similar situation, there is a great blog post on Twiniversity.com that discusses what the typical options are for people who no longer want to use embryos from IVF.

Finally, do you wish you had never done IVF prior to treatment since you got pregnant without assistance?

This is another tough question. Would it be nice to have that money back? Of course, it was a life-changing amount of money. Would it have been better to avoid daily shots, hormone therapy, surgery, etc. Of course. But the answer is no. I do not regret having IVF. For whatever reason, these were the kids I was meant to have at this point in my life, and I probably wouldn’t have had these specific kids if I had not gone through cancer and if I had not done IVF. We had to make a lot of difficult choices in a short amount of time and we did the best we could. I will never regret those choices. I have two amazing kids because of those experiences and I wouldn’t trade them in for the world.

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!

Mary and Grant

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

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

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

When/how did you meet Grant?

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

When/how did he tell you he had cancer?

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

What was your reaction?

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

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

How did Grant handle the news? 

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

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

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

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

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

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

the Author is unknown. 

 Cancer is so limited…

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot eat away peace.

It cannot destroy confidence.

It cannot kill friendship.

It cannot shut out memories.

It cannot silence courage.

It cannot reduce eternal life.

It cannot quench the Spirit.

What would you like Grant to be remembered for?

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

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

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

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

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

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

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

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Lassie Love

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

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

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

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

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!!!!

Inspirational Individuals on the Ides (ish) of November

So I had this whole idea for a regular monthly blog topic called Inspirational Individuals on the Ides (I^3). I totally thought the 15th was the “ides” of every month and apparently that’s not quite the case. You can find a neat little history lesson on how the ides of months are determined here. (And yes, I do know I sound like a dork. And no, I don’t care.)

I was being interviewed for the Manship School of Mass Communication’s (my alma mater) website a few days ago and one of the questions was “why did you decide to start the blog.” Part of it was to keep my friends & family in others state updated on what was happening regarding my cancer diagnosis. But I had already established a private blog that I could use for that purpose. I really just had this inner drive to document what was happening to me because I know as someone waiting to be (or newly) diagnosed, I was scoring the internet for any information of what other people in my situation had been through. For example, I wanted to make sure that any other army spouses out there trying to get TRICARE to pay for a wig could learn from my experience and avoid some of the pitfalls I encountered. For another, I really had no idea what to expect from radiation. No one told me I was going to have to be tattooed ahead of time, or that I’d have to wear a mask and stay absolutely stationary for long periods of time. I knew all of that because of the blogosphere and other people’s experiences, so I was prepared, but those issues easily could have thrown me through a loop. Knowing how much I benefitted from blogs in the days leading up to my diagnosis, made the decision to blog very natural.

I think another major influence is the fact that I have grown up and come of age in a time when so many inspiring individuals have bravely discussed their illnesses or disabilities very publicly in order to raise awareness and research funds, and to empower and educate others. I’ve already talked about quite of few of these individuals: Robin Roberts, Scott Hamilton, Lance Armstrong, Michael Douglas, Shannon Miller, etc. I’m sure I’ll spotlight quite a few of these characters and other well-known people in the future. But this month I want to take a few minutes to spotlight someone who did not grow up in a time when people were very vocal about their illnesses. When people couldn’t find information through a Google search. Survivorship issues didn’t really exist because most people didn’t survive. She was not wealthy or famous. In fact, her real name wasn’t even known for many years. She was instead referred to by the first two letters of her first and last name.

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November’s Inspirational Individual on the Ides is Henrietta Lacks. I first heard about Henrietta Lacks at the September meeting of BAG (Books are Glorious) Ladies, my monthly book club. We were trying to decide what books to read in the upcoming months and someone suggested “The Immortal Life of Henrietta Lacks” by Rebecca Sloot for November. As she was explaining the book to me I was immediately hooked.

Henrietta Lacks was a 30 year old African American woman and mother of five who was diagnosed with cervical cancer in 1951. She received medical care at a free clinic at Johns Hopkins. While she was unconscious for a procedure, they took two samples of her cervix, from both the healthy and affected areas. A physician at Johns Hopkins, George Otto Gey, used samples from the people that were brought into the free clinic regularly for medical research. It was not legally necessary at that time to ask living patients for their consent for these procedures, and it is unknown whether Henrietta ever knew the samples were taken. What is known, is that Henrietta forever changed the medical community.

Although Henrietta died from her cancer a mere eight months after this procedure, many of her cervical cancer cells are still alive today in the form of HeLa, the first ever line of immortal human cells. Since then, her cells have helped cure polio, create new cancer treatments, determine the number of human chromosomes, and countless other medical advancements. They even went into space to test the effects of zero gravity on human cells before any human made the journey. Before HeLa, scientists had no way to safely test human tissue. Her contribution to medicine and science is truly invaluable. And yet she lived in a time when African Americans were segregated in hospitals. When she had only one hospital to go to period, because it was the only one that served African Americans in her area. When even blood donations were segregated by race. Her surviving family never received any financial compensation for HeLa from the medical community. They couldn’t even afford the medical advancements the HeLa cell’s generated.

Just recently, Rebecca Skloot author of “The Immortal Life of Henrietta Lacks” has set up The Henrietta Lacks Foundation to help Henrietta’s descendants and others who have made contributions to medical research without financial gain of their own.

Henrietta, I want to say “thank you!” Thank you so much for your contribution to science. I have personally benefitted from it tremendously. Your cells helped develop and improve effective chemotherapy and radiation therapy treatments which saved my life. They also helped develop invitro fertilization, which has created four embryos that might one day be my children. Thank you thank you thank you from the bottom of my heart. I can’t imagine how scary things were for you. I’m so sorry that you were not fortunate enough to live in 2012 and benefit from the resources and research that I do because of you and others like you. I truly owe you my life.

You have given so many people the happy ending you so rightfully deserved.

Radiation

The road to radiation seemed… to… take … for… ever….. Seriously. From the very first meeting I had with the oncologist, radiation seemed to be this very mysterious process that she didn’t really want to discuss at length. I think this was for a variety (of what I’m sure were very good) reasons. As a newly diagnosed cancer patient you are bombarded with information. You have all these you have to do to get ready for treatment.

Biopsy… check… biopsy again… check… port placement… check… egg retrieval… check… etc. etc.

And I think she wanted me to stay focused on the step at hand and not the step 3,000+ steps further down the road. Totally understandable. But I really wanted to plan plan plan. I really had no idea what to expect from it. I also didn’t know very many people who had lymphoma. I researched on forums but everyone seemed to have different experiences and very few people had been diagnosed as early as I had. The one Hodgkin-survivor I knew had it nine years ago, and she only underwent chemotherapy. So I had it in my head that maybe if my scans were really awesome I wouldn’t have to have radiation. Unfortunately that was not the case. Which is why people always say not to compare your situation to anyone else’s situation, every situation is different, medical recommendations change all the time, yada yada yada.

On August 16 I had my last chemo treatment, and on September 6 I found out that my PT Scan was “pet negative,” meaning that the cancer was no longer detectible. I was totally stoked thinking, “Woohoo, I’m cured! No radiation for me. Right?!” In my situation that was not the case. Apparently with the form of Hodgkin’s that I have, Nodular Sclerosing, there will always be a residual mass left over. The purpose of the radiation in my case is to make sure that within that mass there are no minute traces of cancer flying under the radar.

So I started another check list of things I needed to do to get ready for radiation. The first step was to meet my radiation oncologist the following week. My main oncology facility is not set up for radiation at this point, so I was referred to another center in my area. I met with the new doctor and had the whole radiation process demystified at long last. We talked at length for more than an hour. I’ve never had a doctor spend that much time with me one-on-one, and it was very refreshing. During our heart-to-heart, I found out that I would have 12 sessions of radiation that last about 5 minutes each.  I had been anticipating upward of 30 sessions, so this was really great news. My radiation would take place daily on weekdays and would take just over two weeks to complete.

Again, I was stoked,”Woohoo, I’ll be done in two weeks!” Again, it didn’t quite work out that way. She wanted me to wait a full six-weeks after chemotherapy to begin radiation, so I wasn’t able to begin radiation for about two more weeks after that appointment.

In the mean time, I went through a series of other steps. I got tattoos. That’s right. I’m now all “tatted” up. I have six or seven now. In fact, you can see two of them in this photo:

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Yeah… totally anticlimactic, right?

So basically I had to go for a “positioning scan” the following week on September 18. Which meant I had to have an MRI. For anyone fortunate enough not to know what that means, they put you in a machine/tube like this and take photos of your “innards” while it makes whirling and clicking sounds.

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Using the images, a nice nurse tattooed several freckles onto my skin in strategic locations. I have three down the center of my chest, two on my shoulders and two on my sides. I think there might be a few more, but they’re seriously easy to lose track of … they are that small.

The tattoos are used to keep my body aligned so that the radiation is hitting exactly where it needs to. People who had Hodgkin’s 20, 30, 40 years ago received much higher doses of radiation and chemo, which led to many of them having secondary cancers, fertility issues, etc. later on in life. They have significantly reduced these doses for my generation in order to compromise as little tissue as possible. The tattoos help them do that.

I also had a mask fitting during the same appointment. The nurse put soft plastic on my face and then let it harden, almost like having a clay mask done at a spa. It kind of feels like having a tennis racket help up to your face, except its extremely form fitted.

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I went into my first radiation appointment on September 25 ready for battle in my Team Laura shirt.

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I, of course, had to immediately disrobe. But c’est la vie.

During radiation the mask is bolted to a table so that my head doesn’t move. This serves the purpose of keeping me aligned properly during radiation, and also holds my chin up at an unnatural angle so that less tissue is in the radiation field.

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I will admit, the mask was an issue in the first session. I was trooper up until the very end and started feeling really claustrophobic. The first session they had to do preliminary x-rays to make sure everything was where it was supposed to be, the tattoos were done properly, etc. I felt like I was in the mask for half-an-hour. I even got another tattoo in the process. My guess is that it was actually less than that, but it seemed to take forever.

Luckily all of the subsequent session have been much quicker. I’m usually in the doctors office for less than 30 minutes. I’m only in the mask for about five of those minutes.

I often think about how rough it is for kids to go through these treatments. As hard as it is for a 25-year-old to do it, I can’t imagine what its like for a toddler or small child. I really have so much respect for them. Whats really cool is that the child oncologist at my center does really cool things with their masks. He makes them look like the super heroes they are. Or he’ll make them become cartoon characters. Whatever makes them more comfortable and happier.

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I really respect the fact that he paints them himself and doesn’t get an intern to do it. I think it really speaks volumes about who he is as a doctor and person.

I had my ninth radiation session earlier today and will be done by the middle of next week! Which means I will be done with treatment and am free and clear until my next PT scan in December. I will, at some point, have to have one last surgery to have my port taken out. But again, we haven’t gotten there yet and I’m not sure when it’ll happen.

Right now, all that matters is that I can feel a party in my future and I’m ready to celebrate with those I love!