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.

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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!

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!

Half-Way There Update

I haven’t posted in awhile because honestly I’m at a part of my treatment where not a whole lot of “new” things are developing and I felt kind of “blah.” I had my third chemo treatment last week which means I’m at the half-way point through chemo! I’m really glad because I’m ready for it to be over with! I’ve noticed an increase in fatigue, aches and pains, as well as hot flashes this treatment. While I haven’t had as many nausea issues, I’ve noticed a pretty constant tummy ache and mouth tenderness. I think this is all pretty standard stuff for this stage of treatment, but I’m ready to just feel good again. Unfortunately, I was only able to make it to work two days last week and two days this week. I’ve been having an inner debate about going on disability or telecommuting. It’s a tough decision for me to make because it is nice going into work and using my brain and seeing people. But the 60-minute commute really knocks me out. And its also frustrating when I do feel sick that I’m so far away from my doctors and family.

On Tuesday, I have an x-ray where I’m hoping we’ll find out how much the tumor has shrunk! I’m hoping I might have less treatments, but that is probably wishful thinking! I will definitely appreciate prayers to that effect though! Earlier this week, I unfortunately found out that there is a 30-day waiting period between chemotherapy ending in mid-August and starting radiation. Instead of being done with treatment in mid-September like I thought, it will be more like mid-October. Disappointing, to say the least. But I am hopeful that I will still be able to attend the LSU vs. Texas A&M game on October 20 in College Station, which also happens to be my husband’s 25th birthday! I think an in-state LSU football fix is just what I need! I’ve been lucky that there’s been a steady stream of Texas games since I’ve moved here. I was able to attend both the Cotton Bowl vs. Texas A&M in January 2011 and the season opener against Oregon in Dallas last year. Next year I am hoping I can return to Death Valley in Baton Rouge. I haven’t been to a football game at LSU since 2008, so I’m long overdue.

Focusing on exciting events post-chemo is pretty much what I do for entertainment when I’m not feeling well. Mainly researching possible future vacations and looking at bridesmaids dresses (I’m in four weddings within 9 months of each other).  I’m trying not to be too jealous when I see people posting their exciting vacation and special event photos. I’m looking at this as being forced to save money so I can do it big in 2013 & 2014! I’m really very blessed because the situation I’m in is temporary. I watched a documentary on Mother Theresa yesterday and it reminded me how blessed I am that I live in a developed country, I have access to affordable healthcare and treatment, and have an amazing support system. Even in America, there are many people that have long-term conditions and cancers with worse prognoses, and people who don’t have health insurance or access to treatment the way I do. So I am happy and blessed that I can plan for the future!

When I’m not doing making those post-chemo plans, I’m watching various TV shows and movies. I’m very lucky and have many people to thank, so I’ll usually write a few thank you notes to people on days when I’m not at work. And then there’s always laundry, dishes, cooking and the occasional chore to take care of when I’m feeling up to it.

It might not sound like a lot or particularly entertaining, but I’m really not bored. I’m usually someone who has to be constantly going going going, but I’m generally okay with how things are. That’s not to say I don’t have those days where I’m an emotional wreck and don’t feel like myself, because there are. There was a particularly rough day on Tuesday, where I made quite the scene at the CVS pharmacy with my patchy bald-headed self and basically refused to wait in line for the umpteenth time that day and made them come to me in the waiting area to discuss my prescriptions. And that’s not to say that there aren’t days where I’m feeling fine and will even do fun stuff. Rene’s military ball was two days before my last chemo, so not only was I able to go but I also was up to dancing and really enjoying myself. I also went to a Hail & Farewell dinner for Rene’s unit and just didn’t stay the whole time. It probably sounds cliche, but it really is about doing what you can when you can.

Rene & I at this homecoming ball.

My friend Victoria said it really well a few weeks back, “Instead of walking around Target, I rolled around in a cart or I grabbed pizza to go instead of sitting in the pizzeria … you can find little adjustments that you can make for yourself without totally limiting your life. I actually think it makes you a happier patient when you tackle treatment that way …cause it’s not all 24/7 treatment — It’s Laura’s life sprinkled in here and there.”