Fireworks

Let's take a quick walk down memory lane since my last post. (Plus a little self esteem boost for the guilt I have for putting this off until now...)

• Booking a flight 2 weeks before a mission trip to St. Lucia. 
• Finding out lab results & the plan in the Miami airport.
• Endless paperwork, emails, errands, and phone calls in preparation for moving/PA school (24 days from now, but who's counting??)
• Countless creative DIY projects. The Home Depot guys just laugh each time I enter the store. 
• Annual week of memories at the College World Series. Already miss my LSU family.
• Nanny adventures with three adorable children who continually warm my heart. 
• Quick trips to Kansas to cheer on my favorite baseball player.
• Wedding showers on bachelorette parties on weddings on repeat.
• And then that one thing called "life." It's happening too.

I was hoping that by actually "writing" all those things down, I would have a better sense of what to post about. But I think it actually did the opposite. In front of me sits a blank screen like an open sky, with thoughts shooting off in bursts of colors for every emotion. Fireworks. Where do I even start?!

Everyone loves simple smoke balls. Let's start there and then move towards the more explosive topics. The mission trip with my parish was remarkable in so many ways. We spent most days at the Marian Home for the elders, ran by nuns. Painting, performing eye exams, washing and clipping toenails, tiling the kitchen countertops, listening to their stories, praying with them, and soaking up the endless outpouring of love they have for Jesus. Nights were spent reflecting as a group about our experiences that day and what we thought our individual purpose was that was the driving force for how we ended up more than halfway down the globe, on a tiny island, north of Venezuela. Except, like other missionaries could probably attest, it's not always a slice of heaven. I, myself, struggled for the first three days. It wasn't the moments and work that was causing a problem; I was having a wonderful time. But for the life of me could not figure out why I was there. My ticket was booked 14 days prior to takeoff. And to be honest, I had not once asked myself why I was going. I just was. So, each night at reflection I was silent. Just listening to the others. And for those of you who know me, I am not one to remain quiet! Then later in the week it finally hit me...

On to lighting off a parachute. Our last night there was spent at an orphanage. We picked up 13 pizzas (tuna as a topping, included) and pop to take with us. The children absolutely loved it. But rewind to the moment we arrived. I eagerly walked into the home ahead of the others. In front of me was a boy, who I later learned was 8 year old Orlando, doing handstands down the hallway. But the instant he saw me, he darted down the hall to a different room. I followed his trail and could tell right away he was very shy and possibly a little afraid. After introducing myself and asking his name, age, and commenting on his awesome handstand, I walked back out of the room, giving him time to process everything. When I reached the end of the hall I looked back. There was Orlando poking his head around the corner, waving at me to come back. And that's the moment we clicked. A bond was forming that I would never forget. 

Time for sparks. Let's ignite a fountain. Soon after meeting Orlando, his friend Joshua came running up. We were the three best friends that anyone could have. Both boys only ate one piece of pizza. I thought it was because they were anxious to have their eyes examined. So after the check was complete, I offered them more. Both objected. I was confused. I told them we had plenty and they should at least have one more slice. Orlando quickly said, "I want to know it will be there for my lunch tomorrow." I was taken aback. Here this lively 8 year old was worried about the food he would eat the next day; something no child his age should have to mentally process. I quickly acted and picked out the two pieces they had the first time, wrapped them up, and put them in the fridge. Evidence for them that there would be a piece for each waiting the next day. This was enough to ease their minds about having seconds. This was when my heart started to crumble like the remains of a firecracker. 

But it only got worse. Both boys asked if I had ever been to England. I responded, no. Then they asked if I had ever been to Disney World?!! The emotion in the way they asked reflected the fact that going to Disney was the ultimate dream. Something no one on the island would attain. And then there was me. Sitting there thinking, "Yes. I've been to Disney World twice, and Disneyland once as well." The stinging pain felt like a BlackCat exploding in my hand. Fighting back my sadness, I simply said "yes," then tried to lighten the mood by explaining how cool it was that the city Disney World is located in is Orlando, just like his name! So we spelled it out together and diverted from the pain. Oh how badly I wanted to buy them each a plane ticket back to Florida with me and spend days on end at Disney together. Unfortunately, the questions didn't stop there. Next, each boy wanted to know when I would be back to play with them. Tomorrow? No? Alright, how about Sunday? Not until next year. So, 2014? At that one, I said yes, because it's true. Our church goes each year. But in reality I knew it wasn't possible for me to be back in a year as I would be in school. Another explosion to the heart. 

Once the pizza was eaten, we ran off to play some more. Except that right away I heard one of our leaders call out that it was time to leave. The boys tugged and pulled at my arms. Asking for just one more minute. I explained to the best of my ability that I wanted so badly to stay, but that it was late and we had to travel back to the Marian Home. I can still feel their little bodies holding tight onto mine. Never wanting to let go of me. And I too, never wanted our hugs to end. It took every ounce of me to not let the welling tears fall from my eyes. I held their hands and asked them to promise me with their perfect eyes that they would study hard in school. To promise me they would never give up. Because I knew education was their only chance for hope. My prayer each day now is still the same. It's so easy for children down there, especially orphans, to get in with the "wrong crowd" and lead a disastrous life. I miss my Orlando and Joshua every day. What I would give to be able to adopt them...

After that blow to the heart, it's time for the artillery shells. My lab results. I have said before that I have a love/hate relationship with my medical background and knowledge. And this held true again the day before we set flight for St. Lucia. According to my calculations, the blood samples I had drawn and sent up North should have been processed and read by that day. So naturally I logged onto my Mayo Clinic app and checked it out. Tapping and scrolling. I reached the specific one I was looking for; the one I mentioned last time my doctor wanted to go down and was labeled a potential "false" reading due to the mis-dosed medication the pharmacy gave me. Instead, a big, red arrow. Pointing up. The number had gone up even higher since my appointments in March. What does this all mean? The cancer is creating activity somewhere. The plan initially if it went up was that I would undergo surgery in June to remove my thymus. But the next day right after landing in Miami, my doctor called. She wants to wait. Lab work begins to ignite the firework. But only scans can cause it to explode. Her reasoning for waiting is that we aren't exactly sure where the activity is going on and exactly why it is. Therefore, the new plan is to wait until early November and run through all blood work and scans again. That will show exactly where the cancerous activity is taking place (potential areas of concern: thymus, lymph nodes, and/or lungs), with scheduled surgery over my Christmas break. The only way that will change is if my symptoms progress for the worse. Then things will need to be bumped up. But not really because I'll be full blown into PA school at that point and don't necessarily have the option to push pause. Only time will tell. All in all, nothing new in terms of my health. Just, waiting. So for now, I'll keep racking up a bunch of virtues with all this accumulated patience! 

Now for the grand finale. What was my purpose for being in St. Lucia? After my night at the orphanage I finally spoke up during reflection. I had fought the tears the entire time with the boys and during the ride home, so with the first few words out of my mouth, the flood gates opened. I was there to love. And to be loved in return. Simple as that. Nothing extravagant, yet the most remarkable thing one can feel and experience. A true love for another and knowing they love you just the same. One of my favorite Mother Teresa quotes is this: 

"Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat....I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love."

And boy, did that love hurt. So badly. I can still feel that hurt today.

To close, the 4th of July is my absolute favorite holiday. The sights, sounds, and smells of fireworks, BBQs, and time with family and friends are unbeatable. It's centered around being together and enjoying the moment. So share some love this weekend. And be forever grateful for the freedoms we have in this country. For just a few thousand miles away there are two boys saving their food to see another day.

Snap, Crackle, Pop!

Keri Ellen

Balance & Baseball

Today, two things reminded me that it has been too long since I last posted:

1. Singing the calendar song with my Kindergarteners today taught me that tomorrow is May 1st. The start of the month that my labs are drawn again, and the verdict is decided. How it has almost been two months since my visit to Mayo Clinic is beyond me. And I'm afraid life is not about to slow down...at all.

2. The school I was substitute teaching at today was my old elementary school, and many of the incredible teachers I had back in the day, are still there. Naturally, we spent time catching up and having the "Where are you these days? What is your plan? How have you been?" conversations. I guess that also prompted me to sit down and spend a little time posting.

But what about? I don't have much to update health-wise. The only thing that has changed is I was diagnosed with viral pneumonia a week ago. I had been fighting something for quite a few days, and I knew it wasn't my standard sinus infection. After four days of having my students ask me if they could call me "Mr. Simonds" or "Kermit the Frog," I decided I should probably get in and get some meds. After my appointment, I was reminded of exactly why I had been putting off the clinic in the first place. Because of my health history, nothing is "routine" anymore. For example. I should have been able to just waltz right in, go through an H&P, have a chest x-ray, review the diagnosis, and pick my meds up at the pharmacy. Piece of cake. However, that was not the case. All of that happened, except after going over the diagnosis, it was decided I should be sent to the hospital for a body scan--checking for any possible clots or other unusual findings in relation to the cancer based on my symptoms. Oh, joy. I quick ran back to the middle school where I was teaching, finished a couple more classes, and went over to the hospital after school. (Not at all what I had planned that day.) The nurse was reviewing the process, I told her I was used to it, no questions. Until she was inches away from putting in an IV. "Excuse me, ma'am. Why are you placing an IV?" It wasn't a standard scan. They needed contrast. I should've known. Ugh. Fine. Here's my arm. Stick me and send me home. But no, that couldn't happen either. I was a "hold and call" case; meaning, I was not allowed to leave until the radiologist read the scan and my doctor reviewed the report. At that point, I kissed my planned afternoon goodbye and read a Martha Stewart magazine in the waiting room instead. (For the record, grey's are the new black.) Finally the results came. All was clear. (Exactly like I knew it would be.) And I was on my merry way to the pharmacy.

But like I said, other than that, nothing has changed. Which is neither good, nor bad. Somewhere around the 10th of this month I will go in for lab work. Mayo won't let anyone else touch the samples, but they are at least letting me get it all drawn here and sent up there for processing. If things are still elevated as suspected, surgery will be scheduled and a plan will be made.

Now on to the reasoning behind the title of this post. After talking with past teachers today, and deciding I should blog, I thought it would be nice to share a little something other than medical updates. Which leads me to my decision last summer to apply to PA (Physician Assistant) school versus medical school, like I had planned on doing since the first vivid memory I have of going to my pediatrician as a child. I could write out my reasonings, but it seems more logical to just share the personal statement I wrote as part of the application process. It explains it all. Additionally, I chose baseball as the overall theme, and considering the season is in full swing, timing is perfect. Enjoy!

Life threw me a curve ball. It was not Rawlings; instead “cancer” crossed the plate. Like a batter stands frozen on strike three, time stopped January 9^th when my nurse revealed my pathology report:  “Keri, you do have cancer.” I was taught to refrain from giving important information after you say the “C” word. I can now say I have experienced that first hand. I tried to snap out of the trance, but I have no idea what my nurse said next. Regardless, her words proved powerful enough to change my life.

            Yet striking out never kept Mickey Mantle from playing. My diagnosis of follicular and papillary thyroid cancer was not about to hold me back. I informed my family and close friends, and met with my medical team. Together we created a game plan. With surgery over, radiation was on deck. Appointments were scheduled, except there was still one major area to address. My last semester of college was left blinding me with uncertainty like stadium lights in a midnight sky.

            Most of my professors understood, but some felt I should withdrawal. Forfeit? That never crossed my mind. I had one semester between a diploma and myself. Cancer was not about to prevent that moment. We reached agreement on all I would miss for appointments and the 2.5 weeks of radiation and “isolation.” Finally plans were set and it was time to play ball.

            The semester flew by. I spent only two weekends out of sixteen in Lincoln. When I was around, I was catching up on classes, leadership obligations, and unpacking only to repack my bags days later. Graduation arrived out of nowhere, and after the roar of the crowd quieted, I processed everything. The Lord, relationships with loved ones, and my education have always held greatest importance in my life. Being diagnosed with cancer undoubtedly reinforced those priorities. I have been asked what makes me so strong. Simply, I have the greatest coach. God will never give me something I can’t handle. And no matter how unfortunate a situation, it can always be worse.

After reflecting, it was obvious that while I may have inspired others on my journey, it was my support team that helped reaffirm what truly means most. Going to medial school did not align right anymore. I always imagined being a doctor, so I’ll admit my change in heart was unchartered territory. But while that was once a great aspiration, life, especially now, is about more than numerous years in school and conducting the latest research. What matters is the relationship you form with each patient and compassionately helping them fight through the batting slumps in their lives. I want to be the medical professional that everyone believes in and loves as much as their family, because that’s how I will treat them. Physician Assistants fit this role as they are well known for connecting with their patients and providing individualized care. I currently experience this daily at work. Performing workups and finishing details after the doctor leaves, builds trust through listening to patients’ concerns and the stressors in their lives. Each has a unique story, and everyone has hardships or times when life changed without notice. Simply empathizing and putting a smile on their weary face is unbeatable.

Additionally, just as 9 players on the field must work together to succeed, I believe in teamwork in the medical arena. One thing I appreciate about my job is that if I’m uncertain, I know help is near. Often coworkers and I discuss assessments and plans to achieve the greatest result. As a Physician Assistant I will not be going to a job, but instead a chance to provide hope and the highest level of care. To achieve that, referrals and consults with specialists may be necessary. But those are learning opportunities. In the end, it’s about what is best for the patient. I’m also excited to share my nutritional knowledge. Many diseases can be prevented with simple lifestyle changes. After majoring in Nutrition, my confidence in the correlation between a healthy diet and its benefits medically has only increased. By choosing to be a PA, there’s the chance to implement more patient guidance.

Again, family will always be one of my top priorities. As ready as I am to dive into the miraculous science of human life, I’m just as anxious for the day when I get to raise little miracles of my own. I cannot think of a better way to have perfect balance between a rewarding career and the gift of being called “mom," than what being a Physician Assistant will offer. Driving for field trips, coaching sports teams, and being there in times of need, are priceless moments that can’t be taken for granted.

That curveball thrown at me was a blessing in disguise; the perfect reminder that the game of life is short, and you have to make the most out of every inning. Majority of things are not going to be easy, but having faith and supporting teammates, unfortunate circumstances can be hit deep over the left field fence. I have turned cancer into a home run.

Mother Mayo

“Mother may I?”

         “Yes, you may.”

One of my favorite games as a child was Mother May I? Anytime friends came over, or there was a neighborhood block party (and we were done playing wiffleball and waiting for it to get dark for capture the flag) we would play Mother May I? Some favorites were:  Fly like an airplane three times. Take ten baby steps. Hop like a bunny five times. Do the scissor four times.

I hadn’t recalled those sweet memories for quite awhile. At least not until two days ago...

Due to the familiar uncertainty of my last appointments at the med center, I was recommended by many to go to Mayo Clinic in Rochester. I’ll be honest. I didn’t’ want to go at first. Not at all. I can say now, I am incredibly happy that I did! The professionalism, punctual perfection of their system, attention to every detail, and true compassion of every single person we came in contact with was remarkable.

My first appointment was with the Endocrinology department. Specifically, thyroid. And, yes. There was an entire floor devoted to endo, and moreover there was a specific thyroid team in one area. When my first doctor walked in the door she said, “I am Dr. Dean and this is my thyroid team.” In walked 4 other medical professionals! Incredible. And a little overwhelming at first. After we reviewed my entire past year and records, she announced, “Alright. You’re here because you want the Mother Mayo treatment, correct? Well let’s get started and figure all this out.” Hence why I reminisced about some of my favorite summer days and nights as a child—when life was as easy as the cool breeze and your only worry was what team you would get picked to be on in flag football. If only I could go back!

But ok, back to reality. I’ll skip over a bunch of details. The next few things I did though were lots of blood draws. An ultrasound was scheduled. I had an appointment with the entire Pulmonology team reviewing my thymus and different breathing problems I’ve been having the past few months. Then a CT scan was scheduled along with pulmonary function tests. Mother Mayo wanted me to stay for an entire week of tests and scans. However, that was not ideal with our schedule. So we compromised with what was most important at the current moment and would do more things later if needed.

Which leads me to the next part, my results. The plan was that if all initial tests looked alright, then we would head home Tuesday after my morning appointments. That didn’t sound bad at all, until I continued to wake up with a migraine. For the sixth day in a row! I also had a bunch of other awful things happening while we were there. Tuesday started to seem like forever! Unfortunately all of that was a result of my pharmacy giving me the wrong dose of one of my meds last week. My poor mother. She got to witness a lot of frustration and hurting on my part. I’ve said it before and I will say it til my last day, my beautiful mother is a Saint on this Earth! And I debated sharing this, but one night I was in so much pain, she just cuddled with me and scratched my back until we both fell asleep. It was the only thing that finally helped. I love you, mom!

Finally we woke up and it was Tuesday morning. Dr. Dean had asked that we be taken to a different room. (Which I instantly knew is not something you want to hear as a patient.) She walked in immediately and said, “We’ve got a lot of stuff going on here. And a lot to figure out. Let’s just start at the top and work our way through.” Yikes. Also not something you want to hear! Long story short, one of my most important lab numbers shot up from 0.2 in January to 24.0 that day. It’s the value that indicates that there is cancer somewhere. She was unhappy though because it’s possible my medicine mess-up flawed the results. (But that med has a 24 hour half life and I stopped taking it last Friday morning…) So. We enter round 103 of not having a definite answer. Again. All this patience has to be loading up my suitcase full of virtues!

The game plan. Wait three months and re-do labs. Then if they are still high, she said she would instantly want me in the OR to get my thymus out. Thinking the enlargement is because of the cancer. (Side note:  the enlargement was also seen on their CT scan. All of my care team is unsure of why. There are a few possibilities.) She went on to say that the cardiothoracic surgeon she would want to do the surgery is booked out for the next year. But she would do everything in her power (which seemed to be a lot!) to get me in ASAP. However, the problem I said right away with that plan is that I start PA school at the end of July. Timing just wouldn’t work to get the labs done, book myself in the OR, and recover for a month after surgery. She agreed that wouldn’t work and I asked if we could do the lab tests in two months instead? That is now the plan. If they come back normal, we will monitor my thyroid and the nodules they found on my ultrasound. If it comes back bad, we go in with our shields, armor, and weapons ready to fight.

Alright. I think I covered the most important things. I am going to attach a picture to this blog because we were in a big Minnesota blizzard while we were there and I took a cool picture of the famous “Mayo Clinic” sign on the Gonda building while we were sitting at Starbucks for a little break. For some reason the snow up there was beautiful compared to home. And maybe that was because Mayo has an entire world underneath all of their buildings connecting to hotels and a subway system that can take you all over. You never have to step foot outside! Just another reason that place is truly one of a kind.

My final note is a little inspiration I heard today. I oftentimes listen to the local Christian radio station. And today the radio host shared a story:  a famous Christian singer shared on twitter that he “#followsjesusbecause in every circumstance He shares a little surprise.” And that hit home. In a lot of ways. None of us are in control. So when our “plan” doesn’t work out the way we had hoped, we have to adjust. Just like the Welcome to Holland poem I shared in an early blog. And those situations can be upsetting, “wrong” in our minds, and create a mess. But, that is what God has intended. And it is so true, He always always gives us the grace and surprises we need to keep on His path and to fulfill His remarkable plan for our lives.

So. Smile. Hope. Trust. Adjust. And of course, Pray. 

                     

Déjà Vu

The results are in. And if you remember back to what I went through initially with my thyroid a little over a year ago, then you may as well just stop reading now because it's déjà vu… 

At my one year post-diagnosis appointments, the nodules in my lungs were stable. And so was my thyroid. Both great things to hear! However, my thymus gland showed up on the CT scan double the width it was on the previous scan back in March. My endocrinologist alluded to it briefly, but was quick to note that it was out of her league. She did say was that it could:  1. Be the cancer metastasizing 2. Rebound thymus hyperplasia (enlargement as a result of the radiation) 3. An autoimmune disease called myasthenia gravis (weakening of voluntary muscles throughout the body) or 4. Some other unknown problem. She would be sending my scan to a thoracic oncologist to view, ordered additional blood work for myasthenia gravis, and would call me with the update and the results of all my blood work the next week.

Fast forward to last week when she called with my results. I was substitute teaching in a Kindergarten classroom that day, so it wasn’t the best timing to take a serious phone call. But we managed to quickly cover things while I had a brief minute. My doctor told me that my tumor markers were undetectable (a good thing), no antibodies were present for the autoimmune disease (another good thing), and that the thoracic oncologist said that my thymus could be relatively “normal” in size for someone my age. She then went on to say, “We will just follow it over the next year and see how things go.” Right then I froze. Those same magic words were what I was told when my thyroid tests kept coming back inconclusive a little over a year ago. Long story short, I have very little trust in the whole “let’s just follow things” plan. But like I said, I was teaching and was not in the right medical mindset to process our conversation.

Late that afternoon as I was driving home, I replayed our discussion. I paused again. If the CT scan of my thymus from January could possibly be “normal”, then why did it double in size over the past 10 months? It doesn’t make any sense for a doctor to say an enlargement of the thymus gland is “normal.” Brief physiology lesson:  your thymus produces the immune system cells in your body. This process takes place from the time you are born until your late teens. At that time, the thymus gland (sitting directly behind your sternum) starts to die off or shrink. With that being said, I instantly knew there was no way the new thoracic oncologist had known of the first CT from last March. As soon as I got home I was on the phone with the med center scheduling an appointment with this new doctor.

Ok. If I haven’t lost you yet, now fast forward to yesterday when I had my appointment with this thoracic oncologist. One of the very first things he said was that he did not know there was a previous scan to compare to until I made the appointment. (I knew it.) He went on to say that nothing yet looked too alarming, just not normal either. His recommendation was to rescan in April and then again in July. Next at 1 year. A year and a half. And then finally at 2 years. If all of those came back stable, then I would be in the clear as far as the thymus goes. I smiled and said that I respected his opinion, but was not comfortable with his plan. I went on to explain that a year ago my ultrasound was inconclusive, so were my thyroid biopsy results, then they told me my chance of having cancer was less than 20%, and finally the plan would be to “follow things again in a year.” Had I agreed to that plan back then, today the thyroid cancer would have no doubt been all throughout my lymph system or in my bones and lungs, as it was already spreading outside of the gland capsule at the time of surgery in January 2012. He understood my concern and said he would gladly perform a biopsy if that were my wish. This was not an easy question to answer. To biopsy the thymus, I would be given an epidural for the pain initially, put under general anesthesia, incisions on my left side along the rib cage and below the breast. While keeping me under, they would send my tissue to pathology to examine. If it turned out to be suspicious, they would proceed with a couple more incisions and remove the entire gland. Either way, biopsy or full excision, recovery is not the greatest. A chest tube would be inserted and monitored in the hospital for a couple days. I would then be sent home for a week of recovery, followed by 3 weeks of additional recovery until I was back to “normal.” Now you see why his question was not an easy one to answer.

I asked him if we could combine the two options. I want to have things figured out before I start PA school this Fall, because the last thing I want to happen is to experience complications a year from now while I’m studying my life away and can’t be absent for a large chunk of time. But, I also don’t want to rush into anything if it’s medically unnecessary. He thought that sounded like a good plan. So here is what we decided:  In April I will return for a CT scan on a Tuesday. If there are more changes then I will go into the OR the next day. I am scheduled tentatively for surgery that Wednesday just in case. However if the scan is stable, then we will repeat this same process in the middle of June in time for potential recovery before I report to school in late July. So. All is set unless my symptoms progress. These being increased shortness of breath, more wheezing, extreme fatigue, or more continual chest pains. In that case, I would need to go in for the biopsy sooner. 

Another suspicion of mine is that I was told the left side of my thymus gland is larger than the right. This would mean I would have the incisions on the left side of my body during the surgery. If the enlargement was truly because of rebound hyperplasia post radiation, then the gland should ideally enlarge overall, not just more so on one half. And coincidentally or not, the left half of my thyroid was where the cancerous nodule was located...

We finished our conversation with my question of, “What could you find while you were in there operating?” The oncologist responded that there’s always a chance the thyroid cancer had metastasized, but that was rare. Myasthenia gravis is an option but also rare. The main thing seen in regards to the thymus would be a diagnosis of lymphoma. Which in that case, they don’t typically take the entire gland. Instead, radiation and chemotherapy are started.

Yikes. That was a lot of medical jargon. Hopefully I didn’t leave your head spinning. I did my best to provide enough detail that you understood, but not too much that it became a total mess. Basically, I play the waiting game some more. Like I mentioned in the opening paragraph, this is a mirror image of what I first went through trying to figure out what was wrong with my thyroid. Déjà vu. And while it is extremely frustrating, it’s one of those things that no matter how upset I get, or how much I choose to research medical journals online, things will not change. So instead, I am putting it all behind me and enjoying the start of this Lenten season. I took full advantage of Fat Tuesday yesterday. I’m giving up popcorn again this year (seriously not sure what I am thinking), along with sweets. And then a few lifestyle changes to enhance my faith life. It’s safe to say I am already experiencing withdrawal symptoms from not having any popcorn today. I’m officially an addict!

Oh. And little fun fact. When I got back into town from my appointment yesterday, I was quickly eating some quinoa salad before going into the clinic for work, and all of a sudden I crunched down on something sharp and hard. Only to find that one of my far back molars had chipped off in the corner! My dentist told me to come right in so she could smooth it out. Icing on the cake, right? All I could do was roll my eyes and laugh…I’ve NEVER had any problems with my teeth. What a day! Glad it’s over :)

I hope each of you have a wonderful Valentine’s Day tomorrow! My bible study is reading The Purpose Driven Life, and a recent chapter fits perfectly with tomorrow’s holiday:

“Your time is your most precious gift because you only have a set amount of it. It is not enough just to say relationships are important; we must prove it. Relationships, not achievements or the acquisition of things, are what matters most in life. Let love be your greatest aim. And the essence of love is not what we think or do or provide for others, but how much we give of ourselves.”

xoxo

1 Year Later

**Note** I am officially back in the USA after an unbelievable week with family sailing the Caribbean. What better to do on a layover in Dallas than upload my new post written a few days ago. Enjoy!

January 9th, 2013

Before I begin, I have to note that I'm writing this from the balcony of my room on our cruise ship. The sun has set, and we are sailing away from the island of Jamaica. The wind was quite strong today, so there are peaceful whitecaps crashing along side the boat. I'm not sure if this is real life. Not once has this trip felt "normal" (in a good way). I've caught myself thinking multiple times, "What day is it? What would I be doing at home right now? Am I really snorkeling in crystal clear water with stingrays??!"

But today more than anything, I can't seem to wrap my mind around the fact that it has been an entire year since I was told, "Keri. You have cancer."

That phone call Monday January 9th, 2012 from my nurse, feels like yesterday. I was supposed to be starting my final semester of college, but that Sunday before, I woke up still under the weather from surgery. I also had a weird feeling. Something was holding me back from moving. Immediately after my nurse called, I knew then why I stayed home. God knew being surrounded by family was what I would need the following day. 

I remember every detail. Where I was standing. What I was doing minutes before my phone rang. How my mom was headed out the door to go back to work, before I quickly rushed over and motioned with my hands to wait. Don't leave. And then everything was a process. I explained the details to my mom and Kyle. Called my dad while he was at work. Made special phone calls to my grandparents to make sure they were home; There was something I wanted them to hear in person. And finally my closest friends and extended family were notified. But after all of that was done, I can't remember what I did. I never cried. Or felt angry. I'm sure I researched every medical journal possible dealing with thyroid cancer. But other than that, the rest is a blur...

But here I am! One year later. Somewhere out in the middle of the Gulf of Mexico. Surrounded by my ever-loving family and paradise. I didn't bring up today's date at all today. We had talked about it a couple times the last few days, but not today. I think it was one of those things we all had in the back of our minds throughout the day, but were assuming we all knew and kept it taboo. Instead we spent the day zip lining atop the lush mountains and climbing the Dunn's River waterfall in Jamaica. Oh. And sipping on the local rum! 

I think it's natural for people to reflect on how much has gone by in a year of significance; Be it cancer, the first year of marriage, loss of a loved one, etc. However, I don't feel the need to do that. Yes, I've definitely looked back on what all happened and how majority of my "plans" changed without notice. But. None of that is necessarily going to put a smile on my face. Instead today, I've found myself looking forward to what the future holds. I have no doubt that the plans God has in store far exceed any that I could ever dream! And as strange as it may sound, I have cancer to thank for that. I remember my parents teaching this lesson in CLC class when I was in middle school:  A man is on a tightrope. Believing is the mindset knowing that he can walk across the rope. But having faith is closing his eyes and successfully making it to the other side. In my case, I've always believed. But now I have true faith.

The other thing that weighed heavily on my mind today was how blessed I've been in regards to the support I have in my life. You know your family really loves you when they put up with crazy, roller-coaster hormonal changes, and yet never hold it against you. Or when friends let you be "lame" and go to bed at 9pm versus a night out. And the moments that you just need to vent, and with a simple touch on an iPhone, the perfect person is on the other end all ears. Again, without judgement. (Usually a few laughs though. Sometimes my rambling gets a little crazy!)

As for where things stand medically; I will spend a week at the med center for blood work, injections, scans, and appointments at the end of this month. This is routine protocol for one year post-diagnosis. They will monitor the nodules in my lungs and make sure the cancer is still suppressed and non-detectable. If all is clear, then I don't think I have to go back for 6 months! What a relief that would be. So keep your fingers crossed and prayers coming. 

1 year. 365 days. 52 weeks. 525,600 minutes. (Thanks to RENT the Musical, for that number). No matter how you put it, the past won't change. It can make you bitter. Or it can make you better. This past year has been one that I would never wish upon anyone, and definitely don't want to re-do, but I can say with confidence it has made me better. My dad often asks, "Why you?" And I still can't answer that. Obviously God knew I could handle it and would use His grace, but also, I truly believe it has been a blessing in disguise. Like I've said before, there are many, many other hardships that are more devastating. So I say, why not me?

Bon Voyáge! 

Kaptain Keri

Immune System For Sale

I have to eat my words. I was wrong. Very wrong. And yes, I did just admit that I'm not always right. 

My sleep disorders specialist called on Thursday and revealed the results of my sleep study: 

"Keri, we have a serious problem here. You are extremely, extremely tired. You fell asleep each time you took a nap. (If you remember from my last post, I swore I didn't fall asleep once. And still to this day would bet big bucks I was awake the entire time!) Not only did you fall asleep, but you did so in an average of 2.5 minutes. On top of that, 4 of the 5 naps you went into REM sleep--the deepest sleep. So what all of this means is that you have a disease called narcolepsy."

Say what?!?!

"Based on your history of autoimmune diseases (Hashimoto's Thyroiditis and Celiac's), your symptoms, and failure of the sleep study, it all makes sense. So what we do is start you on Nuvigil. It's the Riddalin of the 21st century without the side effects. (What big whig CEO's and shift workers use.) Nothing can cure narcolepsy, but the symptoms are treated through medication to hopefully bring relief."

I was shocked. Totally stunned. And then scared. Thoughts flooded my head: I don't want to be on that type of medication! What about still needing to straighten out my thyroid meds? Will that make a difference? What almost 23 year old is diagnosed with thyroid cancer, celiac's, and narcolepsy all in a matter of 8 months? I'm officially a FREAK!

After this weird "dream" ended and I got a grip on the situation, I went into medicine mode. I read countless studies, experiments from Stanford, publications in the New England Journal of Medicine, and reviewed research conducted by inhumanely smart Chinese scientists.

In a nutshell (and a language we all can understand) this is what I gathered: 

Narcolepsy is a rare sleep disorder causing excessive daytime sleepiness, symptoms of abnormal rapid eye movement (REM) sleep, disrupted nocturnal sleep, and cataplexy. Not much is known about the disease, but in recent years there has been more evidence confirming it to be autoimmune related. As with all autoimmune diseases, your immune system mistakenly attacks and destroys healthy body tissues. Additionally, I was told in high school when I was diagnosed with Hashimoto's that once you have one AI disease, you're very likely to have two, if not 3 at some point in your life. While that isn't true for everyone, clearly I have reached "two's company, three's a crowd," status. Yippe! Ha. 

But back to being a Narc ;) The disease comes from a lack of hypocretin--a hormone that promotes wakefulness. In narcoleptic patients, they are missing the brain cells that produce this hormone. Recent studies are showing a link between narcolepsy and a variant for the HLA (human leukocyte antigen) gene. This HLA gene is what our immune system uses to differentiate between our own cells and foreign cells. Because of this variant, my body is attacking those 10,000-20,000 hypocretin producing cells, out of the billions of cells in my brain, leading to the autoimmune disease. And interestingly enough, I found in my studies that the HLA markers for Celiac's and Narcolepsy are almost identical, leading to more evidence for my diagnosis. 

Are you lost? If not, congrats! That is a lot of science to comprehend. I eventually stopped researching because it was leading to studies about relating Narcolepsy to coming down with other neural degenerative diseases like Alzheimer's, at an earlier age. At that point, I decided I'd had enough of trying to figure myself out. It was easy for a little bit to feel sorry for myself and wonder why it was all happening to me, and allowing panic to set in about all the "fun" I have to look forward to as I grow older. But after a few days, it all began to clear. 

If these are the 3 AI diseases I'm being handed, then in my opinion I'm blessed. There are over 90 autoimmune diseases, and some are absolutely terrible compared to the 3 I have. None can be cured. Only the symptoms can be managed. But I can think of tons of situations that are far worse than my own. I also know that I have been given the strength to handle this new situation. God won't leave me hanging. Plus, hopefully by the time I reach the senior citizen discount, there will be major medical advancements allowing me to regenerate/clean my immune system. Studies are currently in the works! 

Now for a little dose of good news. My healthy diet already supports immune health. Also, I have a big appointment on Tuesday at RedLine pharmacy to review the full hormone panel I went through a couple weeks ago. I have major expectations. I've heard wonderful success stories about regaining control of the crazy world of hormones and can only hope I have the same results. More about that later this week. 

So. With all of that being said. Who want's to switch immune systems???

Now, I'm off to sleep ;) 

(Not So) Sleeping Beauty

Hellooooo!

Since my last post in July, not much has changed. Which in some ways is good, but most ways it's been adding to my long list of frustrations. At my last big appointment in July, things cancer-wise were stable. No tumor markers were present in my blood work. The spots in my lungs were not scanned and I believe that's on the agenda for my appointment towards the end of this month. Let's just say if they aren't, soon after I talk with my doctor they will be. I requested all of my records in July and am not comfortable with "indescribable" as the word choice noting the spots. Hopefully we can pinpoint those a little better in the near future.

As for why I'm so frustrated:  I am still very fatigued, along with every other low-thyroid symptom under the sun. It's no surprise though that my doctor wants to sllllllllowly inch along and continually has me wait 6 more weeks to see if things change. (For the record, they haven't for the last 8 months!) On top of that, she advised me to see a sleep disorders specialist. I should've refused right then and there. But I consented and met with the very nice man at the med center in August. He completely agreed with me in that he thinks my problem lies with not enough supplementation of medication/thyroid related. However, he thought it would be best for me to go through with a full blown sleep study to prove it to my doctor. Which brings me to the title of this post.

When discussing what all a sleep study would entail, it didn't sound all that bad. 24 hours in the hospital. DVD player. A chance to catch up on some reading. No obligations. And best of all, lots of sleeping! Little did I know it would be absolutely nothing like I had imagined...

I checked-in Monday evening and immediately was uncomfortable. Yes, I had a private room like they promised, but cameras and an intercom were staged around the room, and right outside my door sat the desk with computers where the nurses kept a watchful eye on me. I was told they would "put me to bed" around 11pm but preparation would start at 10pm as it took 45 minutes to hook me up. Thankfully Monday Night Football was on to keep me occupied. When it was time to set everything up, I was in shock at what all they pulled out of the closet. They were not lying about the 45 minutes. In the end I had 10 electrodes glued to my head, 8 on my face, 4 on my chest monitoring my heart, 3 on each leg, a couple on my fingers, 1 band around my chest, and 1 band around my abdomen. Oh, and an oxygen tube in my nose circling my ears. Phew! I had the nurse take a picture of me, but absolutely will never ever show it to anyone. Unless you're willing to pay me. (I was no sleeping beauty.)

Then it was time for bed. Except I had no idea how I was supposed to sleep hooked into the wall and knowing I was being watched. That was probably the closest I'll ever come to being a fish in a bowl. Actually, more like a poor mouse being used for research. Once I was helped into bed, the nurse left and began to speak to me through the intercom. The wires needed to be calibrated. This was the process: stare at the ceiling, now close your eyes but don't fall asleep, look up towards the head board and down at your feet multiple times, look left and right multiple times, blink quickly 10 times, swallow, grind your teeth, and make a snoring noise. That alone was a task.

I honestly slept okay, until they woke me up at 6am. So much for the recommendation to get 9 hours of sleep each night. My breakfast came shortly after. I had to pre-order my meals the night before. At that time the food sounded pretty good. But when it arrived, I instantly lost my appetite. I attempted to eat some of it but couldn't do it. Then it was time for my nap study. At 8am, 10am, 12pm, 2pm, and 4pm they would be coming in to put me down for a nap. I knew there was no way I was going to be able to take that many naps in one day. But, again I was fooled. I didn't actually even get to take one nap the entire day! A little before each hour mark they came in and helped me back into bed (still all hooked up). Next we repeated the calibration process. Finally I was instructed to try and fall asleep and to resist the urge to stay awake. The first session I was still tired from a long, but fun, weekend in addition to an awkward night of sleep prior, so I think I did fall asleep. But, before I knew it my nurse came in and flipped on the lights! She said, "Keri, your nap is over. It's time to get out of bed." I checked my phone. It had only been 23 minutes! I was confused. At 10am, the exact same thing happened. Finally after the noon session (18 minutes this time) I asked if I was ever going to be able to take a real nap. I was quickly told, no. What a joke! I thought this was supposed to be a sleep study. My frustration was quickly growing, and I tried to keep my annoyed sense hidden but it was tough. I did apologize a couple times to the nurses stating that I just couldn't understand why I was having to go through all of this. I also asked if I was "failing". Her response was, "That's a really great question. But I'm not allowed to answer that. I have a very good idea though." Ughhhh. Get me out of here! Finally the entire evaluation was over. Praise the Lord! I was mentally and physically exhausted. And to top it off I felt sick. But I was done and ready to hit the road for home. And as my lovely souvenir, I had rashes on my face, neck, and chest from the lovely tape they used. Along with thick globs of glue in my hair. Again, no sleeping beauty.

Within the next week I will be hearing from my doctor about how it all went. In my mind, I am still certain that everything is thyroid related and I do not have a sleep disorder. And I cannot wait to thank my doctor for her "wonderful" suggestion. I think I'm going to have a hard time keeping the sarcasm out of my voice at my next appointment.

I slept for 13 hours straight last night. Obviously I know how to sleep just fine. So in the end, instead of it being a nice little getaway to lala land for 24 hours, it was an exhausting, stressful, and annoying evaluation. All I wanted was to be Sleeping Beauty, who in the morning would be awoken by a sweet kiss from Prince Charming himself.

I guess I'll keep dreaming...