Body Talk: The Importance of listening to your body — even when it’s whispering

Have you ever heard your body say something to you or felt something that made you say, “Hmmm…maybe I should get this checked out?” Well, that is your body speaking to you. It could be a subtle twitch, a flash of light, a moment of dizziness, a sharp or dull pain, shortness of breath, a rash, a spot, a knot, or even a thought. In reality, it could be a number of things. I would like to share my story to hopefully encourage you to listen to your body and to encourage others to listen to theirs — it could save your life as it saved mine.

On September 19th, 2015, just 13 days before my 25th high school reunion, as I was walking up to my sons’, Hunter and Jackson’s, soccer game, I must have been fiddling with my necklace when all of a sudden I felt a knot in my neck. I knew instantly it shouldn’t be there. I looked at my mom and my husband, Steve, and said, “What the *$%# is this?!” They felt it. I felt it. It was small, like a pea, hard and round. My stomach turned, my heart raced. A million thoughts ran through my mind and my eyes filled with tears. The teams ran onto the perfectly groomed and lined soccer fields, parents were cheering all around me and I was texting my doctor — again! I say “again” because over the last 11 years, I have texted my doctor, who is also my surgeon, many times. He saved my life for the first time in 2004 when I was first diagnosed with a rare form of thymus gland cancer called Thymoma. I had two surgeries in 2004 followed by chemotherapy and radiation and three more surgeries in 2009 for a recurrence. The fact is that he has saved my life more than once and for some reason something told me this wasn’t “nothing.” I had a feeling he would be saving my life again. My body was speaking to me, telling me not to react but to act. In the next five minutes, I watched the boys play and held my six month old baby, Sawyer, tight. As I held back sheer and utter panic, my unanswered text turned into a phone call and thank God my doctor answered. He tried to reassure me that the recurrence I was worried about of my 2004 diagnosis of Stage IV Metastatic Thymoma was unlikely and it was probably just a cyst. Although it was good to hear his voice and possible non-threatening cause of this lump, I was worried — very worried. He suggested I call my primary care physician on Monday and schedule a sonogram.

The weekend was beautiful; not a cloud in the sky all day Saturday and Sunday, but I could not shake the fear, the worry of the diagnosis of a recurrence. I somehow got through the days by praying, spending time outside and writing in my journal. No, I didn’t sleep much, and yes, I cried a lot. I have been through a lot in the past 14 years and thought this was behind me for good. I didn’t want another surgery, chemo, radiation, and I certainly didn’t want to die. I tried not to let my mind go to the worst place but with three children, the baby being only six months old, I just couldn’t help but think of the worst. It was almost unbearable. After all, I am only human and sometimes the mind just takes over. My husband, Steve, always positive and encouraging, kept telling me, “We will take care of it, whatever it is, we will get through it as we’ve done before.”

Monday morning, I went to my primary care physician, who examined me and agreed that I should have a sonogram. I made the appointment right away and went for the exam. Taking action is the only thing that made me feel in control. I encourage everyone to do the same — don’t wait. Of course, it is very scary and easy to say to yourself, I will go tomorrow or next week or next month but there may not be time to wait. Just do it. I went with my mom to the radiology office the same day. Any test is scary, there is the wait time, you are subject to the exam table, the technician and the test itself. You just have to keep telling yourself this is part of the process, part of the solution and you can DO THIS. As I lay on the table, the technician went over my neck and throat with the sonogram wand asking, “Is this what you feel?” Man, I was so scared. I was shaking and felt like I was going to throw up. When it was over, I asked when would have the results and was told, “In the next day or so.” That was NOT acceptable. I needed to know NOW. I said I would just wait as long as it takes to find out the results today in case I have to go for more tests. The office was accommodating and I waited. My mom and I stepped out into the lobby and just sobbed. We both cried on each other for a long time. We were trembling, literally shaken to the core. All of the thoughts ran through our minds: Again?! Why was this happening?! Am I going to die?! It was one of the scariest moments of my life.

The radiologist called me in and said, “This is what I see — a 3cm mass in your neck. I can’t tell if it’s associated with your thyroid or not.” I called my doctor in New York right then and he spoke to the radiologist to make a plan. I would come back tomorrow for a CT scan and he wanted me to schedule an appointment with the Chief of Head and Neck Surgery at NYU Clinical Cancer Center. I couldn’t believe this was happening! How could this be happening?! The next day and night were a blur. I couldn’t function. I felt like a zombie. I just went through the motions one step at a time. Steve and the baby came with me to the CT appointment, which was very helpful, as I could focus on the joy in my life and not on the potential negative outcome. Also helpful was that a plan was already in motion and I knew what I was going to do — head to NYC to see a specialist and do whatever I have to do.

I am a pro at scans. Eleven years of scans does this to a person. I had the neck CT scan, waited for the disc, requested the report to be faxed to my doctor in NYC and went home to make my appointment. They could see me on Friday. Friday? I have to wait three days? Seemed like an eternity. I wanted to go the next day! I don’t remember what I did between Tuesday and Friday. Knowing I had a mass in my neck that could be a cancer recurrence is about as frightening as it gets. I worked a little, hugged the kids a lot, cried and prayed. I tried to pull on my past experience and remember what I have already been through and survived and just took one hour, one day at at time. Friday morning, I headed up to NYC with my mom on the train. My mind raced. The world passed me by through the windows. Sitting quietly trying to calm my mind, I Googled quotations on courage for inspiration. A few favorites are: “Courage is not the absence of fear but the ability to act in the presence of fear,” — Bruce Lee; “Courage is doing what you are afraid to do, there can be no courage unless you are scared,” — Eddie Rickenbocker; “Courage is being scared to death and saddling up anyway,” — John Wayne; “Never be ashamed of a scar, it simply means you were stronger than whatever tried to hurt you,” — Unknown.

Finally, we arrived. Again, we waited. We went into the room and waited more. I tried to breathe, to be grateful that I caught whatever it may be and that I am already at a specialist and it had only been six days. We waited. I saw the PA for vitals and medical history. Finally, the doctor confirmed there was indeed a mass in the middle of my neck. It wasn’t a golf ball but more like a large walnut. Of course, my number one question was, “Could this be recurrent Thymoma?” His opinion was yes. It could be thymoma or possibly thyroid cancer. WOW. Not very good choices. Next up, he moved me into another room and put a long black tube up my nose and down my throat to take a look at my vocal chords and voice box — that was fun. Finally, he jabbed a needle into my throat and plunged a syringe in and out to take a biopsy of the mass. I just sat there in disbelief and pulled on every ounce of strength and courage I had in me to do these tests and take the next step. My mom, of course, couldn’t watch. A plan was put in place. Regardless of the biopsy results, I would need to have surgery — surgery #6. Oh boy. At least it will be out. I caught it and we are doing something about it. I am scared to my core but I can do this; I am courageous. I kept telling myself, “I CAN do this. I WILL do this. I don’t WANT TO DO THIS but I will DO THIS.”

As you can see, the most important lesson here is to listen to your body talk — even when it’s whispering. Don’t make it scream. Another important lesson is to take action. No matter how scary, believe in yourself and your ability to get through it and put a plan in place to address it. Make an appointment with your primary care doctor, get the tests scheduled, and show up. Get the results. Find a specialist either through a referral or research. Don’t wait. Take action immediately. Lean on your support system, family, friends, coworkers, and neighbors. Don’t go at it alone and don’t forget to breathe. Make your travel plans. My personal opinion: do not post on social media. You will need to share what is going on with your inner circle, who will be your support team, and you will need to continually update them. Believe me, that is enough work — much less having to constantly update the “the world” on what is going on. You need to be able to focus.

On the day the biopsy results came in I was sitting at the kitchen table. It was Thymoma. My heart sank. I immediately asked what the plan was and the plan was to have surgery the following Tuesday. I wish it had been for the next day. However, looking back, it was nice to come home, spend time with the kids and the family, go to the boys soccer game, a birthday party, and live life even more grateful for the blessings in our lives. I was filled with gratitude that my body decided to talk to me, by whispering for me to touch my neck, to feel something wrong. I truly believe that whisper saved my life.

I received some good news on this day too! An article I had written two months prior had been published! For years, I had thought about sharing my cancer story in hope of inspiring others and spreading the word about preserving fertility in the face of a fertility-threatening diagnosis. The news came to me in an e-mail, within ten minutes of hearing my biopsy news. Was it a strange coincidence, or maybe perhaps just perfect timing? I was able to share the link to my story and as a result, I received so much, very needed emotional support at a time when I needed it the most. (http://www.curetoday.com/articles/buying-hope-life-after-a-fertility-threatening-diagnosis)

My doctor even said I just might make it to my 25th high school reunion on Friday. That was my goal. I had been helping to plan the reunion for months and if there was a way I was going to attend, I would be there. It seemed impossible considering I was to have surgery just three days before the first event but I was willing to try! I kept the new news to myself as I wanted the event to be a fun celebration of high school memories and reconnecting, not about a new cancer diagnosis.

Steve and I headed up to NYC on the train on Monday night for preoperative testing at NYU, thankfully just bloodwork and lots of questions. Which reminds me, a few words of advice should you or someone you love need to seek medical care and prepare for surgery: write it all down — medications, surgical history, personal contacts and doctor’s contact information because you will be asked for it over and over and over. Know your blood type. Keep a running list of questions you have for the nurse, for the anesthesiologist, and for the doctor. You think you will remember everything but trust me, you won’t. Plus, it gives you a sense of control to have everything organized in a notebook or folder. Take one day at a time. One appointment at a time. Breathe.

The next morning, Steve and I took a cab across town to NYU Medical Center for the surgery. Walking into the hospital for the sixth time was unbelievable and frightening. I was scared; there is no other way to describe it. I was scared of the mass in my neck, scared it had spread, scared of the surgery itself, scared of waking up in the recovery room, scared of the pain, scared of dying. Several times I burst into uncontrollable crying. “Why, oh why, do I have to go through this again? Haven’t I been through enough already?” Then, in an attempt to get it together, I would go in the bathroom, splash water on my face, look into the mirror, look right into my eyes and say, “You CAN do this, you have been through this before and you WILL DO THIS.”

We checked in, we waited, they brought us back for — yes — more questions and then we waited some more. As I sat in the hospital gown, talking to the nurse, the doctor and the anesthesiologist, it was just surreal. I couldn’t believe it was happening, yet it was happening. It just happened so fast! We had a lot of questions about the surgery, the recovery and the potential treatment. Bottom line, they were expecting a 2 1/2 hour surgery. They would remove the mass and as much of a margin as possible. The tumor was near important structures in the body and they really wouldn’t know exactly what they would do and the extent of the surgery until they were in there. The hours we waited seemed to be forever and then the wheelchair arrived. My heart skipped a beat as I envisioned myself being wheeled away from Steve and up to the next floor for surgery. I asked, “Can he please come with me?” He walked with me holding my hand all the way to the big metal doors with a stop sign on them: DO NOT ENTER. We had to wait again until the operating room was ready and tears just poured down my face as I prepared for the next step. Steve and I hugged so very hard. He ensured me that I was going to be okay as he, too, had tears rolling, tears of love, fear, and empathy. Just nine days ago, I felt that knot, when my body whispered for me to reach up and touch it and here we are…

As I stood up out of the wheelchair and walked into the freezing cold, sterile, bright operating room with doctors and nurses clanging and cleaning their instruments all around, it was like something out of a horror movie, even though I knew I was there to be healed, not tortured. I lay down on a table knowing that shortly I would be unconscious and at the hands of the doctors. I had to believe in them, that they were there to help, to heal. I tried not panic. The IV started and instead of looking around, I said a prayer: “Dear God, please let me be ok. Please give the doctors and nurses the skills they need to fix me. Please watch over my family. Please let me live.” I told the doctors that I said a prayer for them. They asked me where I wanted to go on vacation when this was over and placed a mask on my face. Then, hours later, I woke up in the recovery room.

Waking up is an out-of-body experience. There is a moment of time where you don’t know where you are. You hear voices and noises all around you and most of time, at least in my experience, there is pain and you feel drugged up. I was in pain. I was hurting and moaning and my throat/neck felt like someone had taken a baseball bat to it. Poor Steve was so worried as it took five hours for me to come out of the recovery room. It was so wonderful to see him! Even more wonderful when they told me they got it all, “complete gross resection.” What a relief! It was gone. No more cancer. Bye-bye cancer!

The doctors from the surgical team came by to explain what they had done. They had to cut a nerve that runs to my vocal chords and controls the muscle stimulating the diaphragm because it was running right through the middle of the mass. All in all, they did everything they could and were extremely aggressive. The surgery was a success. Thankfully, I didn’t have to spend the night in the hospital. When the anesthesia wore off, Steve was able to take me to our friend’s apartment in Chelsea. Thank goodness for friends in a time of need! We stayed for two days. I slept and ate and slept a little more and we even took a walk on the West Side Highway in the rain. I was tired and sore but grateful to be alive. I couldn’t wait to get home to Hunter, Jackson, and Sawyer!

Thursday, on the way home, I felt as if a huge weight had been lifted, my pain was under control and my spirit much brighter than the way up, which, despite the courage quotations, was pretty gloomy and depressing. Hugs from my family, mom, aunt, children, and of course, lots of licks from our dog, Sophie, was the perfect welcome home. So many people brought food and beautiful fall flowers which made our home smell wonderful and look bright compared to the hospital. The next few days were rough both mentally and physically. I made the mistake of trying to stop taking my pain medication and, of course, that affects you in many ways. Note: DO NOT stop taking your pain medication. Follow the directions on the bottle. I should have known better. I just wanted to BE better.

Friday night, October 3rd, was the first event of my 25th High School Reunion Weekend. I knew I probably shouldn’t go. However, I was determined not to let cancer keep me from attending, so I took a shower, took my pain medication, put on some makeup and I “saddled up”, as John Wayne would say. What a great turnout! There were so many familiar faces and because of my other article, I received hugs, encouragement, and “props”, as they say, for enduring the previous cancer journey and sharing the experience with others to provide my message of hope. Little did everyone know the support they were giving me was helping me through the current experience. The restaurant was loud and no one could hear me because my voice was barely audible but it didn’t matter. I was just happy to be there, even for just a little while. Saturday was our reunion picnic but there was no way I could attend. I was so tired. I was disappointed but to make up for it, I slept all day and went to the second evening party at a local brewery. I remembered to take my pain medication and just stayed for a little while. The energy of the place, the friends, and the music were very healing. I was tired but I wouldn’t have had it any other way. I HAD to be there. So there it is, another little lesson — as best as you can, get on with your life, if you are physically able, don’t lay in bed, don’t feel sorry for yourself. “Get up and get going,” as my dad would say. Feel the sunshine on your face, listen to music, surround yourself with the things and people you love. Keep a journal; write it all down, the good and the bad. The pain and the pleasure.

I did have a few days of sadness. On Sunday, I went for a mani-pedi with my mom and sisters. Maybe I was just incredibly tired; maybe it was the cloudy day but as I sat in the chair, tears just poured down my face. I was just so emotional. I just couldn’t stop the flow of tears. Looking back, I think it was anxiety about the pathology results from the surgery. The margins? The treatment? The unknown…

In the morning, it was sunny. I had a good night’s sleep and the day felt different. My mood brightened and I felt grateful, happy, and excited again. Amazing how just one day can make such a difference. As we all lay in the backyard on a blanket, I thought of the movie, Annie and the lyric, “the sun will come out tomorrow!” As a family, we went for long walks by the lake and enjoyed delicious meals together but yet, there was still an underlying anxiety as I couldn’t help to think about the results and the pending third trip to the city.

Monday morning, I called the doctor’s office to find out when I should come back for my followup appointment and get the stitches out. Since the doctor was going to be out of town the following week, they wanted to see me on Thursday. So, we made plans to head back up. This time, my mom and I drove up and went straight to the appointment. Thankfully, for the first time since this began, we didn’t have to wait. The PA came right in and took the out the stitches. The doctor came in next and I immediately said, “Thank you so much for saving my life! I am so happy I felt it!” He said, “I’m so happy I was your doctor because what I saw on the CT scan was only the tip of the iceberg and in actuality, the mass was larger than I expected. If it had been much bigger, I wouldn’t have been able to take it out and as it was, I got all of it but I had to cut a nerve that was running through the middle of the tumor.” He said this would permanently affect my voice — I would be hoarse, not able to yell and affect my ability to cough. He also explained that because it was attached to my aortic wall, that he had to literally scrape it off. “Scrape it off my aorta?” HUH?! How CRAZY?! Then, he went on to say, “You will find that in the report, it will state there are positive margins, which describe how there are still microscopic cells on your aorta which I was not able to remove due to the sensitive nature of that vessel, in fact, some doctors may not even have attempted to scrape it, nor remove the nerve. I was very aggressive. You will, therefore, need radiation to treat that area.” I’m sure I was staring at him with my mouth wide open in shock. He explained that the radiation treatment is “VERY effective” which gave me peace of mind. He also suspected it wouldn’t be a problem for me to have the treatment in MD or Washington, D.C. as it would likely be every day for 4–6 weeks. I tried to process all of this information as best as I could. The thing that kept running through my mind wasn’t the missing nerve or the creepy news about my aorta but that he said, “I got it all.” For the first time since this all began, I felt a little bit of peace in my soul that I wasn’t going to die from this incredibly annoying tumor.

Mom and I made the best of it our trip. We had an amazing dinner at Savra, which just may be my new second favorite restaurant in NYC, took a stroll around the block and stayed in a boutique hotel on Lexington Avenue. In the morning, we went to the oncologist appointment. I had seen this same doctor back in 2009 when they thought I had a recurrence in my chest. He told me that IF my surgeon was able to take it out I would need a year of chemotherapy, not the best news. I won’t go into all of the details of that surgery. The summary is that I had surgery #5 to remove a mass in my chest under my sternum. They had to remove a rib to get in there and once they were in, it turned out to be pneumonia! Praise the Lord, hallelujah! No chemo. I was so happy it wasn’t cancer, I didn’t focus on the fact I just had another surgery.

The oncologist remembered me and my story, that I had been diagnosed with Stage IV cancer just two months before our wedding. He was pleased to hear about the past six years, our three children, and overall excellent health. He then shared, what probably goes down as one of the BEST THINGS I HAVE EVER HEARD…..”The good news is that the cell type of your Thymoma has not changed. It is the same as is was in 2004, it has not turned into a more aggressive form. It has not spread to your lymph nodes or nearby nerves which dramatically reduces the likelihood of it recurring in this area. I also think this is not new, the tumor you have is indolent, or sleepy.” It had been there for a long time and once you receive radiation therapy, I think you’re done.” Of course, I asked, “Do you mean done with this, as in done with treatment or done-done as in done with the cancer?” “Done with the cancer.” AHHHHHH!!!! My eyes filled with tears, I wanted to bawl my eyes out with joy, relief and pure exhaustion but I knew it would hurt my throat so I held back the tears and hugged my mom long and hard instead. Considering everything that I have been through and the events of the past week or two, this was the absolute BEST NEWS POSSIBLE! Sharing the news with Steve was quite a moment as I could hear the relief in his voice. I couldn’t wait to get home and hug him and the kids. I am going to be okay. I am going to be okay.

The ride home was so much more peaceful than the previous trips back and forth. The sky was grey and for the first time in a long time, our mood was relaxed. Both my mom and I preferred this weather than to the blazing sun; it was better for driving. We listening to music, had some snacks, and agreed that this trip could have turned out much differently. The news could have been the opposite; I could be facing a diagnosis that no one wants to hear and the subsequent treatment I would have to endure. Not this time! Most likely never. We are so grateful, there are no words to describe the relief, the joy, the happiness that in a few months, this too shall pass. I will continue to be monitored for life but this experience will be a memory, a part of my story, my journey.

Arriving home this time was, again, emotional, but in a celebratory way! Yes, I still would have to complete radiation but with what I was facing and the potential for a much different diagnosis and outcome, the news we received in NYC and delivered to our family and friends was as good as it could get. The weekend was beautiful. The whole family spent time outside, we watched football — my Clemson Tigers played Notre Dame on Saturday and won! — and we counted our blessings. I prayed for strength, I prayed for health, and I thanked my body for speaking to me — the quiet whisper that saved my life.

If you are able, be your own advocate. Make the necessary calls to doctors, order your paperwork to be sent wherever it needs to go, call to follow up and make sure everything was sent. Finally, if you need additional treatment, do your research. Start with local teaching institutions. Read about their radiation oncology departments and read the bios of the physicians in the group. Then make the calls. I waited a few days to begin the process to just enjoy the good news, the family and get caught up with work. Now, it was time to get the ball rolling for my radiation treatment. I called one hospital and they weren’t sure if their radiation oncologists have treated Thymoma, or if they had a head and neck specialist. They took my number and said they would get back to me. Not being one who likes to wait around, I called a second hospital. When I shared my history, they said, “Sure, we can see you, we have a head and neck specialist.” I asked if the doctor has treated Thymoma and to my surprise, they didn’t say, I will find out and get back to you. Instead, they said, “I will ask him right now.” My heart started to race and my eyes teared up as I felt this was moving in the right direction, I was going to be able to get the treatment I needed and close to home. “Yes, the doctor has many years of experience treating every cell type. Can you come in next Friday?” Oh, the sheer relief! I suppose it sounds odd I would be crying and actually, overwhelmingly happy that I found a place to get radiation. A little strange to say the least, however, if this is what I need to do, then I will “put my cape on”, as my friends say, be happy and grateful I found a place that can treat me and take this next, and hopefully last, step to healing.

I hope that by sharing my story, you, too, will listen to your body — even when it’s whispering, and tell others to do the same. If you would like to share my story please do, as I know in the bottom of my heart and the depths of my soul that this journey is for a greater purpose. I have my “cape” on! I am ready for the next chapter in the story. I will continue to pray for strength, for courage, for skilled physicians and for healing. I will thank my body every day for speaking to me and my mind for listening to the quiet whisper that saved my life.