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