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Janna’s Story

I am a person who always dreamed of having a family of my own. I was raised in a family where family was cherished. My parents and my two brothers were my world. On my 35th birthday, I was single having never been married and remember thinking that maybe this was going to be my life. I had just purchased a home and I had a new career as an ER nurse which was more true to who I am than any other chosen job or profession had been previously. I felt blessed, content and for the first time in my adult life felt truly okay with being alone, well single, I was never truly alone.

janna-jones-1A month later I met Nate. He was an EMT who worked for my hospital’s ambulance service. We both seemed to find everything we were looking for in each other. By the time I was 36 years and 4 months we were married and had a newborn son, Zander.  At 37 years and 2 months, I was pregnant for a second time. We were nervous about having kids so close together but we were delighted. After weeks of feeling that something was not right, I miscarried at 14 weeks gestation and we were devastated. We went through the months of healing that we knew we needed and hoped we would be given another opportunity to become parents again. In the spring of 2011, at 38 years and 2 months old, I told my husband on the inside lid of a box of cupcakes that I was pregnant.

I went to my first appointment with my obstetrician on May 26, 2011 after having been to his office a month earlier to have blood drawn. My obstetrician told me that my labs showed my thyroid hormones were low (hypothyroid) and that he had written himself a note to physically examine my thyroid. He palpated my neck and then said, “Have you ever noticed that you have a lump on your thyroid?” I may have once, but really I was not sure. He voiced concern over the lump and explained the importance of managing my low functioning thyroid during pregnancy for the health of both me and the baby. It was as my husband and I were leaving his office that I had my defining moment of this journey. I remember standing next to my husband, confirming with my OB that he wanted me to get my thyroid checked right away and thinking, “I am going to find out I have cancer while I am pregnant.”

August 3rd, I was working a busy shift at the ER. The biopsy of my thyroid nodule had been performed by the endocrinologist, who was managing my hypothyroidism, on August 1st. I was waiting to hear the results and my cell phone was weighing down my scrubs. Around 11 a.m. the call came through. The news was what my gut expected; the biopsy showed that the nodule was in fact thyroid cancer. My endocrinologist spent about 15 minutes on the phone with me. As soon as our conversation was finished I called my husband and the tears started. I was 38 ½ years old, 22 weeks pregnant and it was official, I had cancer.

Nate and I met with my surgeon in late August. At that meeting I remember my surgeon telling me that saying a person has a papillary thyroid carcinoma is like saying they have a dog. There are so many variances to this type of cancer and some are so non-aggressive that they hardly even look like cancer and some are much more aggressive. He then continued on to say in the area of the country where I live that they see much more aggressive thyroid cancers and they do not know why. He said that while papillary thyroid cancer is very treatable that it needs to be treated with respect. I would need a full thyroidectomy because of how large the carcinoma was and possibly a right sided anterior neck dissection to remove any suspicious lymph nodes. Nate and I made the decision prior to my official diagnosis that we would wait on surgery until after I gave birth. The surgery can be done safely in the second trimester of pregnancy however, there is some risk of miscarriage when undergoing general anesthesia. After having suffered the miscarriage just one year prior to this, we were too scared to risk her, even with the risk being minimal. However, we did want to get the surgery done as soon as it was deemed safe by the surgeon following delivery. My obstetrician was planning for an induction on November 30th. We scheduled the surgery for December 13th.

 

janna-jones-2The next few months were a balancing act of trying to enjoy my pregnancy while knowing that this cancer was growing inside me. I gleaned comfort from the fact that it was the stress of the pregnancy on my thyroid and the work of my excellent obstetrician that resulted in the cancer being discovered. While doing online research I found Hope for Two. I could not believe that there was an organization that was set up specifically to support women who were diagnosed with cancer in pregnancy. I signed up online and within days was assigned a support woman whose story was similar to mine and who was at that time five years out from her diagnosis and thriving.

On Wednesday, November 30, 2011, I gave birth to our baby girl, Lilah Elaine Jones. She had a head full of blonde hair and she was perfect. I remember crying when she was born, thinking we did it, we got her here safely and now it was time to take care of Momma. During Lilah’s delivery my first epidural fell out and a second one was placed. The next day I began to have a headache and my blood pressure started increasing. I was required to stay in the hospital one extra day in order to get my blood pressure under control. We were discharged on Saturday with me on three times my normal amount of blood pressure medicine and Lilah a little bit jaundiced. Lilah had 2 blood draws and one check-up that week and I had a neck CT and two pre-op appointments. Additionally, after several days of misery, I finally realized that I had a spinal headache. When Lilah was nine days old I went in for a procedure called a blood patch to cure the spinal headache. It took away my headache immediately and left me with back spasms. I was not feeling like things were going my way.

On Tuesday, December 13th, I entered the hospital again for my total thyroidectomy and right side anterior neck dissection.  The surgery went long but well and what the surgeon removed was as he termed, “a big ugly cancer and many angry lymph nodes.” When I woke I was only able to speak in a whisper. Prior to my surgery there was some concern that the nerve to my right vocal cord may need to be taken out with the cancer. He was able to remove the cancer without damaging that nerve but for some reason the nerve to my left vocal cord was not working. That vocal cord was paralyzed. He felt right away that the nerve was only temporarily stretched and that my voice would eventually come back. I was so happy to be awake, see my husband and know that the cancer had been removed that I honestly did not care that I could only whisper.

I was discharged from the hospital Wednesday, with one of two original drains still in place in my neck. The following day we removed that drain and within hours I began swelling. I called my surgeon Friday morning and he started me on antibiotics. By Friday evening it was much worse. Nate and my mom had been asking me all day to go back in to be seen, but I was being stubborn. Finally after speaking with my good friend and fellow nurse, Marti, who urged me to trust my own trained assessment skills, I looked in the mirror one more time. Not only was the area above the nearly four inch incision at the base of my neck bright red and puffy resembling a bull frog but also beneath my chin there was redness and swelling that was hanging down and swinging like a turkey.  “Really Janna,” I thought to myself and immediately told Nate that he and Mom were right and I needed to go in.

 

janna-jones-4When we got to the ER, I sat down by one of my very favorite ER docs. He looked at me and immediately asked if I thought my airway was at risk.  He asked me, “Are you having trouble breathing, swallowing, have you been able to eat?” Yes, I looked that bad. He called the on-call surgeon and sent me to a treatment room. At this point I was swarmed by my ER friends. I remember sitting there on the bed in the ER, just feeling so defeated. Couldn’t anything go right for me? In the past 17 days I had endured; two epidurals, postpartum hypertension, a spinal headache, a blood patch, painful back spasms, a major surgery, a subsequent paralyzed vocal cord and now a post-op infection. I was in the ER for thirty minutes and I was admitted for two days.

By Christmas, I was much better. The redness and swelling in my neck was all but gone, my voice was getting stronger and my energy level greatly improved. Lilah’s jaundice had resolved and she was beautiful and getting chubbier cheeks by the minute. In early January, I had my follow-up appointment with my endocrinologist and two days later with my surgeon. That big ugly carcinoma measured 4 cm at its largest point, an increase in size from the 2.5 cm it was when found. Those many angry lymph nodes were 13 in number and 10 of them were positive for cancer. There was 4 vessel involvement, which meant the cancer was looking to travel. During my first meeting with my surgeon he shared with me the different levels of aggression that can be seen with papillary thyroid cancer.  You guessed it – mine was the more aggressive form. Through the discussions with both docs I learned that I do run a high risk of return of this cancer. As I was trying to pin my endocrinologist down on the specifics of my risk for return he stated, “I won’t say that you have a 100% chance of return.” In other words, at some point it is most likely coming back. This was very hard for me to learn and accept. I have since learned to accept it but carry with me a deep-rooted hope that it will not and knowledge that even if it does, it is still treatable.

The number of lymph nodes that were involved meant that I had to have the radioactive iodine. Unfortunately, at that time there was a shortage of a medicine called Thyrogen that would have allowed me to have the radiation and keep taking my thyroid hormone pills. Since this medicine was on a national shortage and my cancer was so aggressive, at seven weeks postpartum, I stopped taking my thyroid medication in order to receive the oral radiation one week later. Back in August, my husband had been accepted into nursing school to begin in January 2012. We received his acceptance just a few weeks after my diagnosis and aside from being excited to get some good news we had been working towards this goal for a few years and did not want to give up the opportunity.

On February 3, 2012, two weeks into my husband’s first semester of his nursing program, I received a very large dose of radioactive iodine, thus becoming radioactive. Nate, Zander and eight week old Lilah moved out of the house for five days. I referred to this time as my “radiation vacation” because though I did not want to be away from them, I could not prevent it so I tried to just enjoy the peace. I was off of my thyroid hormones for 10 days total. I read once that symptoms of being hypothyroid are essentially symptoms of EVERY system in the body running slowly. The thyroid, a small, butterfly shaped gland in your neck is quite frankly, a big ole busy body. I had horrible muscle cramps, muscle weakness and joint pain. I was exhausted, had trouble concentrating, was anxious and depressed and all of this was on top of only being eight weeks postpartum.

 

janna-jones-and-daughter-lilah-3It took me four months to recover from the radiation and for my thyroid hormone levels to return to a normal range. In that time I somehow mustered up the strength and courage to return to work at the ER. I was only allowed to stay in a normal thyroid hormone range for a brief time as my endocrinologist increased my dose even more so that I would become hyperthyroid. This is a practice they now use to prevent the cancer from coming back. Having too much thyroid hormone is not as miserable as having too little; however it also comes with fatigue and some other not-so-pleasant symptoms. I miss my thyroid, I really, really do and it has been a huge adjustment living without one, an adjustment that I have not always gracefully made.

In December of 2012, after a year of monitoring my endocrinologist declared me in remission! He will continue to monitor me by checking my tumor marker every six months and a neck ultrasound every year. In February I celebrated my 40th birthday and marveled at how much had transpired in five years. I am now a wife, a mother of two, almost seven years into a challenging and fulfilling career and I am a cancer survivor. My husband, parents, brothers, sister-in-law, other extended family and friends carried me through this. I have never felt love like I have felt since August 3, 2011.

My now twenty month old Lilah, whom we call, “Mommy’s little lifesaver” bounces when she walks and tosses her shoulder length blonde hair around as if she is in a shampoo commercial. She smiles with her big blue eyes and communicates in a combination of baby sign-language, English and what can only be guessed to be Klingon (Star Trek). I have heard other cancer survivors say that they are thankful for the cancer but I cannot honestly say that I feel that way, at least not yet. However, when I watch Lilah bounce around my house or make her big brother giggle with her high-spirited antics and the four of us get simple, chaotic family time together, I know how blessed we are and I know that though much was taken from me, much more was given in return.