Sunday, February 19, 2012

My Story.

Five years.

Those words taste really, really sweet in my mouth. Five whole years. That's 1,825 days. And I'm thankful for every single one.

Today is February 23, 2012, and as of today, I am officially five years N.E.D. For those of you who are not actively involved in the cancer world, N.E.D. means No Evidence of Disease, and it is what the doctors declare you when you receive a clean scan. During the first five years is when relapses generally occur, so making the five year mark is kind of a big deal. So, I wanted to share my story with you guys. This is just a snippet, but here is my journey through these past five years.

When I was in the fifth grade, the school calendar that we had allowed for a short winter break in the middle of February. That year my family decided to go on vacation to the beach with a couple of my parent's friends. While we were there, I came down with a terrible cold. The cold ran its course, but during that time a knot appeared on the right-front side of my neck. When we got back home, my mom took me to my pediatrician. The doctor checked my neck and was not one bit concerned. "These things happen all the time," he told us, "they can be caused by a number of things, even just a simple dental cleaning. And they can take up to a year to go down." But, since the knot was resting on my airway, he decided to attempt to get rid of it via antibiotics. I had several rounds of these numerous medications, but the knot never shrank, which left the doctor quite puzzled. He then sent me to my parent's family doctor, Dr. G, who also put me through several rounds of antibiotics. This medication cycle had lasted almost an entire year at this point, and the knot was still unfazed. The family doctor couldn't figure me out, so I was referred to yet another doctor: an otolaryngologist that my dad had been going to for his own ear problems, which I unfortunately gained in the gene pool. When the otolaryngologist, Dr. M., looked into my ears, he saw several things that needed to be fixed, including a total reconstruction of my left inner ear and a removal of a cholesteatoma from my right ear. This would require some out-patient surgery. So, a couple weeks later in late January, I found myself in what would become a very familiar setting at Baptist hospital. The plan originally was to fix my ears and wait to see if the knot on my neck would go away as a result. But my family doctor had this feeling that he just couldn't shake and, the week of the surgery, he called in and ordered a biopsy be done of the knot in my neck while I was under anesthesia. No one was really quite expecting the results.

While in recovery from this first surgery, the completely baffled otolaryngologist brought the news to my parents. Cancer. Papillary Carcinoma of the Thyroid to be exact. The doctor was so astounded, as he had never seen this type of cancer appear in this way. Once I was awake enough to understand them, the trio of my parents and Dr. M. delivered the news to me. A month later, I sat in the same exact hospital for a complete thyroidectomy. What began as a simple 3 hour surgery soon turned into 7.5 due to the complicated growth of the tumor on my thyroid. In total, they ended up removing the entire thyroid itself, all of my lymph glands in my neck, two of my para-thyroids (they control calcium intake), and my right vocal chord nerve. (This is where I want to interject that if they had let this run its course like they wanted to, rather than biopsy, there is a very real chance that I wouldn't be able to speak today.) I remained in in-patient care for a little over two weeks. I would elaborate more on this time in my life, but I really don't remember it. Drugs can do some fabulous things! I do remember the fact that I couldn't speak or lift my own head off of the pillow by myself. It was no fun at all.

A few months after surgery, we had our first set of scans. This was in the stone age of five years ago where we didn't have the lovely medicine known as Thyrogen yet (I'll get there in a sec!). So, to begin with, I had to go on a no-iodine diet for 6-8 weeks. Do you know what all has iodine in it? Everything! So it was interesting. During that time I also had to be off of my thyroid hormone medication, which made me a tad bit crazy! I went into the hospital one day to receive a tracer pill for the cancer cells, and then the following day for the actual scan. This scan was super long, and no fun as I had to have my bladder full for the entire thing! Then, once it was completed, the radiologist reviewed the scan and ordered my dosage of radioactive iodine, also called I-131. A pill was delivered inside of a huge, metal, sealed container that I was only allowed to open after everyone else had left the room. My parents then drove me straight home where I was isolated to my room for 7-10 days. I couldn't be near anyone at all, because the radiation that I had inside of me would cause harm to someone else with a healthy thyroid. Anything my parents needed to give to me, they had to leave at the top of our stairs and go back down before I could move out of my room to get it. I am a big people-person, so that was quite difficult. I missed my hugs, and seeing people. Finally, when all was said and done, we went in and did a separate scan to mark our progress. It was a slow-working radiation that needed to be given some time, so it was several months later before I went through that same cycle again.

After I had dieted and scanned again, the scans appeared to be clear! There was one tiny spot on the film that was literally the size of a pixel, so to be safe we had some blood work done in the labs. When the blood work came back, it revealed that the spot (which was resting on my one remaining vocal chord) was larger than the scan had led on, and called for another round of radiation. So, another 7-10 days isolated. This time, though, they had to almost double my dosage so that the same concentration of radiation would hit that small spot. I was quite sick for a few days, and being sick when no one can be around you is not an experience I would wish on anyone! When I had the radiation, I lost my sense of taste for almost six months. I couldn't taste a thing, the only think I could determine was if the food was warm or cold. This radiation also settled into my salivary glands, making them no longer function. This is still an issue that I deal with today, but medicine is making some amazing discoveries, and we're hoping that we'll be able to treat it someday! A scan that soon followed my last round of radiation showed that I was finally and officially NED!! Each year, I go back for scans. Now, though, I am old enough to be on a medication called Thyrogen, which I mentioned earlier. This is a three day process that basically takes the place of all of the dieting and hypothyroidism! I go in two days for shots, and then 72 hours later I have an extensive lab draw. From this, they are able to tell more than they would with the scan in the first place! So neat, and so much less taxing on my body! Anyway, I have been blessed enough to remain NED for the past five years. True, these years have been an emotional roller coaster with unexpected twists and turns, medicine changes, lab work, doctors visits, relapse scares, and days when I honestly didn't know if I'd make it through. It's been one of the scariest and most difficult things to face, but I'm so much stronger for it.

In many ways, five years ago seems like a lifetime, but in many others it seems like it all just happened yesterday. Cancer has taught me many lessons. It's taught me how to appreciate the small things in life, because you never know when you won't have time to enjoy them as much. It's taught me that, no matter how bad it may seem, there's always someone who is worse off. Always. It's taught me to not sweat the issues, no matter how pressing they may seem at the moment. Life is too short to worry all the time. And finally, it's taught me how to love people. Through this journey, I have been blessed with the opportunity to get to know an entire world of people. The cancer world is one that I wish no one had to enter, but it's one I'm thankful for every single day. These people have the biggest hearts of anyone I know, and I truly aspire to love like they all do one day. Because of them, I am now considering entering into a field of working with pediatric oncology patients. This is a field I probably never would have even heart of had I not been involved myself! It's neat the way things work out like that.

So, there you have it, that's my story. I want to take a minute and thank each and every single person who has been a part of my life over these past five years. I am so blessed to have each person that I do in my life! I can't imagine life any other way. Every single smile, encouraging word, gift, conversation, and experience has been more of a blessing than I could even begin to explain! Without all of you, I most definitely wouldn't be here today. So, thank you. SO much. I love you guys with my whole entire heart!!

Every day that I wake up and look into a mirror, the pink crease at the base of my neck is a reminder to me of how beautiful life is. True, it's a scar. But with that scar comes the most amazing feeling in the world. The feeling of knowing that I'm loved, and lucky, and that I have a story to tell the world. I really hope that this gets to whoever needs to hear it, because I want to leave it at this: YOU are special, YOU have a story, and YOU are changing lives out there. I'm so thankful that I have YOU in MY life!! <3



  1. You have such a sweet gift of being able to tell your story. Thank you for letting strangers know and try to understand just a little of your journey. You have blessed me today with your testimony of hope!

  2. Wow, Sarah! What a crazy story. I love the way you've been able to use the super hard stuff to see the beauty in life and in other peoples' stories. I pray you'll be healthy for many years to come!

  3. And YOU are such an amazing Godly young girl... thank you for sharing your story. I remmember being there at Baptist and coming to pray with you with Ms. Lisa. I am so grateful to have seen you grow up and I can not wait to see how GOD uses you in the coming years.

  4. avesome adam's apple:)