You Can Call Me Ned

Jacob and I walked into my oncologist’s office this morning and I was a ball of nerves. This appointment meant cancer or no cancer. Another round of radiation and isolation for ten days or freedom from molecular scans and the LID for three years. There was a LOT riding on this appointment.

My doctor walked in and nonchalantly said, “Well, you’re good girl.” Umm… “What?!? Like, I’m good, good? Like cancer free good?”

After ear-to-ear smiles, high fives, and giddy chatter (along with all the necessary medical junk), I left the office with a new name… Ned. No Evidence of Disease! Praise the Lord.

IMG_6347Sorry for the blurry picture, but Jacob snapped this as I was literally *running* out of the office yelling “wooooooooooo!”

And just like that, I had a peace that is hard to come by as a cancer fighter. The peace of knowing that for the moment I was victorious over this wretched disease. The worry muscle in my brain can rest in knowing that there is no evidence of cancer in my body. I will rest well tonight, but I know there are many that are still fighting and that breaks my heart. I pray that each of them get their NED designation soon.

The Top 6 Things We’ve Changed Since My Cancer Diagnosis

When I was diagnosed with the big C, I began to fully realize that what I put in to my body affects my health and well being. We’ve all heard “You are what you eat,” but it wasn’t until my diagnosis that I really bought in to that statement. Our family has made a lot of changes in how we eat and the products we use to try to minimize our future cancer risk. As a mom, I want to do everything I can to keep my sweet babies from having to go through any health issues that may (or may not) be preventable.

During my first appointment with my oncologist I asked what I thought was a logical question: “What causes thyroid cancer?” He basically laughed in my face and said that if he knew that he would win a Nobel Prize and be wildly famous. So, I followed up with “You are the expert here, what do YOU think causes thyroid cancer?” He explained that his research isn’t complete, but based on his expert knowledge he would attribute a few factors to the sharp increase in thyroid cancer. The main factor he believes causes thyroid cancer is perfluorooctanoic acid (PFOA). Below I list the Top 6 Things We’ve Changed Since My Cancer Diagnosis, including why you should eliminate PFOA’s from your home.

The Top 6 Things We’ve Changed Since My Cancer Diagnosis

1. Eliminate PFOA’s

PFOA is a chemical originally made by 3M and is linked to thyroid disease, testicular cancer, kidney cancer, and a whole host of other health problems. According to the EPA’s website, in 2006 the government agency asked the top eight companies producing or using PFOA’s in their products “to work towards elimination of these sources of new exposure to PFOA by the year 2015”. Well, thanks EPA! You obviously know that this chemical is hazardous to human health and you ask for to be eliminated over the next 9 years. Did PFOA’s cause my thyroid cancer? I will never know. However, I did use products daily that included this chemical. PFOA’s can be found in Teflon coated non-stick cookware, microwave popcorn and stain proof carpets and upholstery. One of the first major changes we made was to toss out our beloved Pampered Chef Non-stick cookware. We now use good old cast iron pans and All-Clad pots. I was hesitant at first to make the switch because I loved the easy clean up and convenience of old cookware. However, a smart gentleman at Williams-Sonoma taught me how to change the way I cook to make nearly every pan be non-stick. He told me this saying that keeps food from sticking to the pan: “warm pan, cold oil”. Simply heat up your pan, then add cold (or room temperature oil) to make your pan less likely to stick.

2. No Soda.

This one is hard. HARD I tell you! I knew the day I was diagnosed that I needed to quit soda. However, I was addicted. I wasn’t the crazy gal who chugged a two liter a day, but I felt like I needed soda several times a week, maybe even daily. I looked forward to drinking it and craved it often. As soon I was diagnosed I scaled my soda habit to once a week and boy was it a long seven days waiting in between. But a funny thing happened, after a few months I would forget to drink a soda a week and the week turned in to 10 or 12 days. Soon I realized that I didn’t crave it any more. I’m happy to say that the last time I drank soda was October 2013. It took 9 months, but I kicked that habit to the curb. Now, I have had a sip here and there just to taste it, and you know what? It’s gross! I don’t think I would be able to drink a can of Coke right now if I tried. I know that is crazy talk to some of you (it was to me at first), but I promise it’s true. If you quit drinking it, you’ll quit craving it and eventually it will not even taste good. Plus, have you seen what soda does to your body? One last note on soda: several types of soda, including Mt. Dew and Dr. Pepper have an ingredient called brominated vegetable oil (BVO). This ingredient blocks iodine absorption in your thyroid and can be toxic. Just don’t drink it!

3. No Parabens.

Parabens are chemicals that are used as a preservative and is mainly used in cosmetics. Since I have thyroid cancer, my risk of other cancers including breast cancer has nearly doubled. My doctor informed me that there is a link between parabens and breast cancer, so for that reason alone, I have stopped buying products with parabens in them. Check the ingredient labels on your bathroom counter and in your make-up bag. If you see these words on the label, I suggest that you throw it out: methylparaben, ethylparaben, propylparaben, and butylparaben. Now, if you google parabens you will find studies that say they are completely safe. However, I’m going to go with my doc on this one and play it safe.

4. No Fake Sugar (aka: artificial sweetner).

Honestly, I can’t believe people are still eating fake sugar. I get it, it’s calorie free and seems like a great alternative to regular sugar. My friends, that couldn’t be more far from the truth. There are LOTS of health products out there that tout health and wellness and “safe” weightloss and include these nasty chemicals that go by the names of sucralose, aspertame and sacchrin. These three ingredients are NOT food, they are chemicals. In fact, sucralose alone, which goes by the name Splenda, can cause a whole slew of health problems. The craziest thing about “foods” with a diet label is that they all contain fake sugar, which increases obesity. Have you ever seen a super healthy, fit person who chugs diet soda? Nope, they are all drinking water!

5. Minimize Real Sugar.

This is a tough one also. You know we love to party, and a party without cake is just a meeting. So… we eat cake, but we eat it sparingly. We have minimized our sugar intake by minimizing the times per week that we indulge in dessert. We used to have dessert 4-5 times per week. Now, we try to get that number to one day a week. It takes some planning and a whole lot of will power, but it’s doable. Sugar causes inflammation, which in turn can lead to cancer. Also, fat gets a bad rap for making us fat and clogging our arteries. The real truth is fat is good – our bodies need fat to operate. What our bodies do not need is sugar! Fat doesn’t make us fat; sugar makes us fat.

6. Eat REAL Food and More Local and Organic Foods.

Our motto is simple. If you can grow it or kill it: eat it. We try to shop at local stores that grow local meats and veggies. When we shop at big box stores we try to shop the perimeter and limit the items we buy in the actual aisles. Sure it takes more time and effort to cook whole foods, but your health is worth it! I promise! We recently purchased a farm and will be living on it full time in the next few years. One of my life goals is to grow our own food. I can’t wait to raise chickens and cows and have a big garden. That way I will know exactly where the food we eat is coming from and what it contains. Thankfully, for now there are great organic options at the grocery store that will do for now!

Obviously, I’m not a doctor and have no medical training, so please don’t take anything I say as medical advice. However, I have done LOTS of research on my health and wanted to share what we have changed in the last two years.

The Rest of My Thyroid Cancer Story

You can read the beginning of this story here. This is another super long post and while I would love for you to read my story, I’m writing this mainly for me. I have never written about my cancer and it’s something I want to have in writing that I can keep forever.

I had my first thyroid cancer surgery appointment in Lexington on January 31st. Jacob drove us to UK hospital in a blinding rainstorm and neither of us spoke a word on the 45 minute ride. We had KLOVE playing at a barely audible level and as we pulled into the hospital parking lot something miraculous happened. I heard the words, “this is where the healing begins, ohhh, this is where the healing starts”. I reached for the volume knob and cranked it ALL the way up. Jacob and I looked at each other with big tear filled eyes and huge smiles. God was letting us know that it was all going to be ok. We could not believe what just happened. Literally the moment our truck crossed into the parking lot the song “Healing Begins” by Tenth Avenue North came on the radio. How in the world was that timed so pefectly? God – that’s how. He cares about us so much that he even orchestrates radio waves to play the exact words for little ole me at the perfect time! Wow!

Our attitudes changed, and for the first time in three days we smiled. Not fake smiles, not forced smiles, real, genuine, joyful smiles.

We first met with the resident at the surgeon’s office. I don’t remember his name, but I will never forget him. As I broke down crying in the exam room, he gave me a big hug and told me, “you will be ok.” I SO needed to hear that from a doctor who dealt with this everyday. About 10 minutes later, my surgeon, Dr. Sloan walked in. I hopped off the exam table and stuck out my hand to greet him. “You’re my new best friend!” I said. Jacob just stood there and laughed. Jacob stood and shook his hand as well. The important thing about that hand shake was that Jacob had not shaken hands with anyone in several months. He injured his hand playing football and it hurt terribly to shake hands. He had become a master of the fist bump. However, he said I’m going to shake the hand of the doctor that’s going to heal my wife… and he did.

My appointment lasted two hours and they ran lots of tests. I had a tiny camera shoved up my nose and down my throat (that was pleasant) and an ultrasound to look at my thyroid and the surrounding lympnodes. Dr. Sloan wanted to see with his own eyes what he was working with so he actually did part of the ultrasound himself. I was shaking and nervous as I laid on the table while he glided the ultrasound wand back and forth across my neck. Every time he would stop and stare at the screen I would ask, “What do you see? Is it bad?” I quickly learned through this process… Ask questions. Question everything. Then when you think they’ve told you everything, ask more! After the ultrasound was over, he explained that it looked contained. With teary eyes, I told him that I had complete faith in him to heal me. What he said next, I will NEVER forget.

“Well, Allison, I believe in the ultimate healer and He will heal you. I’m just here to help make it happen.”

Wow! More tears.

We left the appointment with burdens lifted, more joyful hearts, a plan of attack and a surgery date the next week! Again, God was moving this process right along. There would not be weeks of waiting; I only had one week until my surgery to rid my body of cancer. Hallelujah!

A few days before my surgery, we posted on social media about my diagnosis. The local media saw Jacob’s twitter feed and they announced it on the news. I felt exposed and vulnerable with everyone knowing, but I also knew that I would have more people praying for me. At this point, I coveted prayers, so the more the merrier. We were bombarded with phone calls, e-mails, texts and messages that people were praying for me. Some people we had never even met – we felt so blessed.

Surgery
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Pre-surgery selfie and the last picture of me without my scar

I had my total thyroidectomy on February 7, 2013. That morning, I snuggled Luke extra close and I recorded my voice saying, “I love you, Luke.” and ” I love you, Jacob.” There is a risk with thyroidectomies that your voice box could be damaged temporarily or permanently and I wanted to be sure that my boys could hear those words from me forever.

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My sister bought these buttons for everyone in our family to wear!

I had complete peace about the surgery. God had been with me taking care of all the details up until this point and I knew He would continue to do so. I was so at peace that when my family came in to see me  in pre-op my mom thought they had already given me medicine to calm my nerves. And of course, we had a small party right there in pre-op! My parents and sister came bearing gifts. My sister got me a hand knitted scarf in the “thyroid cancer colors” – purple, aqua and pink, and my parents got me a new shirt. They sure know how to make a girl feel special! Jacob was there too, holding my hand until they wheeled me away. Just before they took me to the operating room, my pastor, Brent, and a deacon from my church came and prayed over me, Dr. Sloan and Jacob. Peace, just peace!

I spent just one night in the hospital and then headed home to recover. From that day forward, my body is completely dependent on a drug to replace my thyroid. Every morning like clockwork, I pop a little pill that keeps me alive. No, I won’t drop over dead if I forget it, but if I didn’t take it for a few weeks I would be in a coma and a couple weeks after that, I would be six feet under. I loathe the fact that I’m dependent on medicine, but you gotta do what you gotta do!

I love what Jacob wrote on the white board in my hospital room. You can see it in the picture below:

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Treatment

Four days after my surgery, I went back to see Dr. Sloan to get the pathology reports. It was confirmed that I had papillary thyroid carcinoma and that there were actually multiple tumors on both lobes of my thyroid. However, the muscle margins were all clean and so were the 15 lymphnodes that they removed. Praise the Lord. We were told that I had a very high cure rate, not remission, but CURE. So grateful for those words. Since I did have multiple tumors, I was going to need radiation treatment to kill any remaining cancer cells.

The next week I met with my oncologist, Dr. Ain, for the first time. It still feels really weird to say “my oncologist.” In case you’ve never experienced it, oncology waiting rooms are probably the most depressing place in the world. I was so relieved when they called my name so I could get out of there and head to an exam room. Dr. Ain was the first thyroid oncologist in North America and he is *the* expert on the subject. If you read a book on thyroid cancer, he probably wrote it. How incredible is it that he is in Lexington, Kentucky? The expert on my type of cancer is 45 minutes from my home! Wow! God’s provision once again! Dr. Ain taught us everything we could ever want to know about thyroid cancer and then some. We set up a plan of attack for my radiation and he even worked it around our trip to Disney! I did not want to miss out on that!

After three weeks of a crazy, strict low iodine diet, a full body scan and two rounds of injections, my body was ready for radiation. It’s a special radiation treatment called I-131, radioactive iodine. Basically, I would swallow a single pill, become radioactive for a few days and hopefully my cancer would be eradicated. They took Jacob and I into the basement of the hospital and told us all the risks and precautions we should take with me being radioactive. They made Jacob leave the room and I gave him one last hug. I wouldn’t have human contact for the next 10 days because everything I touched would become radioactive as well. In walked a woman dressed from head to toe in protective gear wheeling a cart with a few items on top. See that jar below? It is made of tungsten and it contained a single pill. Those tongs… that’s what the radiologist would use to pick up the pill and give to me to swallow. Yep, that’s right, a woman covered in protective gear has to use 12″ tongs to pick up a pill that I have to swallow! Hey, you gotta do what you gotta do! So, down the hatch the pill went and within 15 minutes I was radioactive.

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I sat in the third row of our car as Jacob drove me to my parents house. They graciously let me stay in their basement during my quarantine of 10 days. Y’all, it was a LONG 10 days. I now know why solitary confinement is such a terrible punishment. The worst part was not being able to see Luke. He couldn’t even be in the same room as me and I didn’t get to hug or touch him on his 2nd birthday. It was torture, but it was worth it to get rid of my cancer. The radiation made me sick and nauseous, but only for about 48 hours, which is much better than traditional chemotherapy and radiation treatments. I didn’t have a follow-up to see if I was cancer free for six months. My oncologist explained that the radiation was like a war: Some of the soldiers (cancer cells) die instantly from mortal wounds. Others get injured and live for weeks weak and wounded until the eventually succumb to gangrene. So, we waited. And on September 20, 2013, I was given the NED designation: No Evidence of Disease. We now call that day “Good News Day” and you better believe that we celebrate every year!

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This is the hilarious card Jacob gave me to open after my treatment. He knew I would need a good laugh!

Come back tomorrow because I’ll be blogging about what we’ve changed in our lives since my cancer diagnosis including what products we will never use again and the things we’ve banished from our diets.

D-Day

Today, I celebrate my D-Day – my Diagnosis Day! I know most people wouldn’t think that this is a day for celebration, but you know I love a party, so… we celebrate. Two years ago today I was diagnosed with cancer and today I celebrate that I am alive, that I am healthy and that today will not be like that day. I get asked frequently, “How did you know that you had cancer? What were your symptoms?” Well, it all started with my big toe. Seriously, it did. If you want to hear the whole story, settle in and keep reading- it’s a long one.

First symptoms + Initial testing

One morning in September 2012, I woke up to my toes tingling and feeling like they were “asleep”. You know that feeling when it feels as if thousands of tiny pins are pricking your skin? That’s what I was feeling. Over the next two weeks, that feeling spread to my lower legs, then my hands, forearms and shoulder blades. I put a call in to my doctor in Denver and he ordered a CT scan to check for a pinched nerve. When we got the report, all was clear. No pinched nerve. Jacob and I were sitting on the couch looking over the report when we noticed a notation on the last line of the page: “Of note – 9mm ovoid nodule on R thyroid lobe.” Ummm… What? Of course, I freak out and call my doctor because he did not even mention it. He reassured me that a large portion of the population have nodules on their thyroid and that he would like to look at it again in three months, but not to worry. Of course, I worried. I’m no dummy because before I called my doctor, I had become an “expert” on thyroid nodules thanks to WebMD. Hah!

Fast forward to January 14, 2013. The Broncos had just lost to the Ravens in the divisional round of the playoffs and we were packing up to head home to Kentucky. Thankfully, I had written a reminder in my planner to have a check-up on my thyroid. I called the doctor to let him know that we were leaving town to see if he wanted to see me. He did and I had an ultrasound the next day. The nodule had grown. It wasn’t a drastic growth, just .1mm, but it was enough to warrant a biopsy. He knew that we were anxious to get home for the off season, so he said I could get the biopsy done in Kentucky.

Biopsy + Diagnosis

My biopsy was scheduled for Jan 31. Through a chain of events including the help of some good friends (thanks Kelly!), that date got moved up to Jan 28. Jacob wasn’t allowed in the procedure room with me, which made me anxious, but I tried to stay calm. The radiologist performing the biopsy goes to our church, so at least I had a somewhat familiar face in the room. I was awake for the whole procedure that included a HUGE needle guided by ultrasound going into my neck. All I could feel was the pressure, but I couldn’t move – at all. You see the thyroid sits very close to several arteries and my voice box so if I moved I risked that needle going places that would be very dangerous. After three attempts at the biopsy, I was told that the nodule had the consistency of a bouncy ball and it “wasn’t giving up any cells”. At that point, my heart sank. I knew. I had cancer. I tried to stay positive (and stay still), but my heart and my mind were racing. After seven attempts at the biopsy, the pathologist finally had enough cells to test. I left the hospital and Jacob took me home to rest with a noticeable wound on my neck. I was told that I would hear something in 48 hours. However, four hours later, my phone rang.

The number on my caller ID was familiar, it was my doctor here in Kentucky, Dr. Clark. Again, my heart sank. I knew. I yelled for Jacob to come in the room and we sat at our dining room table as I slid my finger across the phone to answer it. The conversation was like something you would see in a movie.

“Allison, this is Dr. Clark. How are you?”

“I’m fine.” I’m usually not short on words but that is all I could manage to utter.

“Are you at home? Are you by yourself?”

“No, Jacob is here with me. I have him on speaker phone.”

And then, Dr. Clark’s voice began to waiver ever so slightly and he informed me that I had thyroid cancer.

My whole world started spinning out of control. I couldn’t see. I couldn’t think. My entire body was numb. I was 28.

Jacob was intently taking notes and asking questions as Dr. Clark spoke. His voice sounded so positive but all I could think of was that word – cancer. As our conversation drew to an end, I only had one question – “Will I be able to have more children?” He affirmatively said, yes. I was relieved, but still terrified.

As we hung up the phone, Jacob leaned over and wrapped me in his arms and the floodgates of tears opened. Our world had just been rocked like never before and we knew we had a long, hard fight in front of us.
We called and informed our immediate family of the news and within an hour they were all at our house with dinner and ice cream (I told you we love a party, even under bad circumstances.) We hugged, we cried, we laughed. We were all just stunned.

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This picture is blurry, but it’s the only one we have of the night of my diagnosis. You can see on my neck where the biopsy was done. Luke was so sweet and sensed something was wrong, so he snuggled with me all night.

 

I would love to tell you that I was strong after my diagnosis. That I wasn’t worried. That as a child of God, I knew that everything would be ok. However, I can’t tell you that. I was terrified. My worry muscle in my brain was being worked to the point of exhaustion and I was inconsolable. The next two days of waiting for my first surgery/oncology appointment was pure hell. I know my Mama is not going to like me using that word, but that’s just what it was – hell. I was so incredibly blessed because I only had to wait two days; many people wait weeks for their first appointment. However, there was a surgeon in Lexington that specialized in thyroidectomies and he just happened to have a new patient opening on the morning of the 31st (that biopsy getting moved upended up making a big difference for me!) God was already at work orchestrating all of the events in my cancer story to work for my good, even if sometimes it didn’t always feel like it.

I’ll continue the rest of my story tomorrow, but for today I’m off with my little family to celebrate. First stop: Bluebird Cafe.