Good News and Lessons Learned

I had my post-treatment follow up appointment with my endocrinologist this past week and she confirmed that there was no distant metastasis and I am finished with surgery and treatment for now. On some level I had been expecting this good news, but what I didn’t expect was the instant elation and the feeling of a weight being lifted from my shoulders. Once a year I will have a thyroid cancer screening, and it is something that I will always have to think about on some level. There is a 25% chance of recurrence in the next 10-20 years, and I have been on the wrong side of the odds often enough in the last year to take that statistic seriously. However, I am ready to move on and get back to living a rich and full life.

In my last blog entry I wrote about an inspirational composer named David Maslanka. It was over 20 years ago when I last had the pleasure of working with him, but I remember his lessons so clearly. I took a leap and wrote to him, sharing my story, my blog, and his influence (and asking him about a commission, but that is a story for another time…) He wrote back, honoring me with more wise words: “One of the functions of illness is to make us stop and truly pay attention to needed changes. Sometimes illness is the only thing that can get our attention.” These words resonate with me in a powerful way.

Allow me a tangential moment: Some say thyroid cancer is a “good cancer” to get, and others say cancer is cancer. Roger Ebert died last week from papillary thyroid cancer –the most common of the four kinds of thyroid cancer and often referred to as the “best” kind. I can see both perspectives. On one hand, I am so very grateful that I wasn’t diagnosed with a more deadly kind of cancer and it is absolutely amazing that there is a treatment that targets and destroys only thyroid tissue. I know that it could be so much worse. On the other hand, there is danger in minimizing something that is a serious condition. I minimized it myself, which almost prevented me from being open to the lessons that illness can bring.

After I was diagnosed, a conversation with my friends Don and Teri was a turning point for me. I began to take my condition more seriously. Don, who is a colon cancer survivor, talked about some of his reflections that came about as a result of his journey along this path of diagnosis, treatment, and recovery. Two words in particular stood out: “More joy.”

LESSON #1:  More Joy

How simple, yet profound. While I am grateful for having a career that I love, I will be the first to admit that my life/work balance is not always very good. Will I get to the end of my life and regret not working more hours? Wish I had spent less time with friends and family? That sounds ridiculous, but in reality that was the life I was living. I am so fortunate that joy is something I experience in my day to day work, but if I learn this lesson well, it will also be a more regular part of my personal life as well. Summer – bring it!

LESSON #2: Slow Down

When I had my first surgery I planned it in the perfect space between two gigs, neither of which I wanted to give up, and over Thanksgiving break, so I didn’t miss too many days of teaching. When I was faced with the reality of a second surgery and treatment, I met with my supervisor and explained the situation and timeline. He very humanely told me to take the six weeks off to take care of myself and heal. I am not exaggerating when I tell you that a wave a panic crested within me. The first words out of my mouth: “I can’t take six weeks off!” He looked at me patiently and said, “You need to take the time off.” After some back and forth negotiation, we settled on two weeks off, followed by four weeks of a reduced schedule. (I simply couldn’t abandon my students giving recitals this semester.) In retrospect, although it isn’t something I would have done without encouragement, taking the time to slow down and concentrate on taking care of myself was essential. On my better days I was able to prepare healthy food, go to yoga or acupuncture, and take walks. On my bad days, I was able to get the rest I needed and not worry about what I was missing. Making the time and space to slow down and take care of myself is a lesson I need to continue to working on. This time off was a gift, and I used it wisely. The challenge will be continuing with self-care as I return to work full time.

Lesson #3: Ask for Help

This has been the hardest lesson for me. I like to take care of people. I hate asking for help. When my friend Karen was healing from surgery, she made up “The Karen Game.” Every time she asked for help she got points. Every time someone helped her, they got points. Everyone won the Karen game! I started playing “The Tracy Game,” and I was “in it to win it” as my sister Kerri would say. When I asked my friend Morgan to set up a meal train for me at www.mealtrain.com we both got points. Everyone who brought a meal got points, and I got points for asking. When Jenny drove me to my scan, we both got points. My mom, and my in-laws got serious points for coming to Colorado to take care of me, and I got points for admitting I needed their help. What a fun and positive way to realize this simple idea: When someone has an illness, people want to help. People can’t make the illness go away, but by participating in the healing process with a meal, a gift, or a visit; they are doing something, which feels good. When I simply reversed the situation and realized I would want to help, I realized that asking for help is a way to allow others to participate in a meaningful way.

I have been overwhelmed and humbled by the enormous outpouring of support I have received. It has lifted me up and surrounded me in love. It has shone light into a dark time in my life, and made my journey far easier than if I had traveled alone.

Lesson #4: I am loved. 

Thank you from the bottom of my heart.  

Equinox

No winter lasts forever; no spring skips its turn. ~Hal Borland

My friend Kate sent me this quote on the day of my full body scan, which was also the day of the vernal equinox. She said it was no coincidence that the scan was to occur on this transitional day.

The day began with an early morning drive over the pass to the hospital where I had gotten the RAI one week earlier. My friend Jenny drove me since I was in no condition to be behind the wheel. When we arrived, the nuclear medicine technician led us both back to the testing room. He asked me if I am claustrophobic. I said, “I don’t think so.” Well, I didn’t think so until I opened my eyes to find the machine just millimeters from my nose. Suddenly a feeling of panic developed within me. Fortunately, my rational brain quickly took over and decided that panicking was not going to help the situation. Instantly a few techniques I have practiced kicked into autopilot: breathing, audiation, and visualization.

I attend a weekly restorative yoga class where I have been in the practice of holding one gentle pose for 10-15 minutes while focusing on my breathing. This form of meditation was the first technique I used to stay calm and focused. In reality, the scan is not a difficult process, but knowing I needed to stay still in this machine for 40 minutes did take some mental creativity to manage.

Once my breathing was slow and regular, the first thing that popped into my mind was the song “Somewhere Over the Rainbow.”  At the time, that was my happy place. Why, I wondered? When I thought about it, the message for me was that reality is not always as scary as what we fear in our heads. When I was a child, The Wizard of Oz was my favorite movie…except for the tornado. I was so afraid of the tornado that I refused to visit my aunt who lived in Kansas. Reality: Tornados are dangerous, BUT the chance of being caught in one (and transported to Oz to meet a wicked witch) is highly unlikely (especially growing up in Massachusetts). Reality: Cancer can be deadly, BUT I am fortunate to have a good prognosis and to have caught it early. I am doing everything within my control to take care of myself. This is a temporary condition and I know I will get through it.

The rest of the scan was a surreal retrospective/flash forward as a 70's/80’s rock radio station played a soundtrack to my visualization of the upcoming year. Aerosmith sang to me while I visualized a visit to Las Vegas in April to see my husband perform with his percussion quartet, and to catch a few rays sitting by the pool. Elton John was my muse while I imagined a fabulous sister weekend in Denver with Kerri. Guns and Roses sang to me while I imagined a road trip in June, with my husband (and a new puppy?) to visit family and celebrate our niece’s high school graduation. Billy Joel serenaded me while I imagined a fun and epic road trip with my mom traveling from Florida to Colorado.  Finally, David Bowie sang to me while I visualized our trip to South Australia in January for teaching and performing. In my mind, this also includes lazy days at the beach, exploring Australia’s wine country, and a cage dive with great white sharks!

Although it is important to live in the present moment, there is also value in looking forward. Having something to look forward to in a time of darkness sheds light and energy on your day. Having dreams and making plans can be a positive way to remember, “this too shall pass.” Life is a series of transitions. I recall with great clarity a lecture given by the composer David Maslanka during my undergraduate years at the University of Massachusetts. He drew a shape on the blackboard that looked like this:

 He then described life as a series of these passageways:

Our whole life we transition from one wide, expansive space to another, but in order to get to the next wide, open space, we must pass through these narrow, uncomfortable spaces that challenge us. Similar to passing through a birth canal, it is a passageway to another phase in our lives. I have always remembered these wise words at challenging times in my life and the visual image is a beacon of hope. There is comfort in the certainty that the challenge or discomfort is a temporary condition and that beyond it lies the next open and expansive space.

The scan came to an end and it was time to go home. The med tech let me take a picture of my scan with my phone, and told me off the record it looked normal to him, in other words – no metastasis! You can see my thyroid bed shining like the North Star, some radiation in my salivary glands just above it, and then the path of radiation through my digestive system. 

My follow up with the endocrinologist will be April 4^th and at that time I will get the official results and find out what the next steps will be. There is some concern that there is too much residual thyroid tissue left and it could mean a third surgery, but my hope is that this narrow passageway is about to give way to a new wide, open, expansive space.

I have been on the thyroid replacement hormones now for two weeks now and I dare say I am starting to feel like myself again.  My husband was home last week for his spring break and we had a wonderful time together, catching up with friends and soaking in hot springs. The weather has shifted toward spring, which means long walks along the Rio Grande and summer is around the corner.   

No winter lasts forever; no spring skips its turn. 

Radioactive Tears

In the week following the RAI treatment, I had some very rough days, although I think most of it had to do with being severely hypo. The burning sensation from the radiation continued for the first 24 hours, and although not painful, it was a bit unsettling. It felt like being on fire from the inside out. The first night I had six episodes of waking up out of breath with my heart racing. On the advice of my primary care physician, I went to the emergency room in the morning for an EKG, a full panel of tests, and observation. I was on day two of isolation so he called ahead and they were able to prepare an isolation room for me. After a morning of tests and observation, the conclusion was that my oxygen level was dropping off when I fell asleep. Two symptoms of being hypo are the slowing of the heart rate and the breath rate, and this was creating a sleep apnea condition of sorts. I was prescribed home oxygen and this alleviated the problem in subsequent nights.

In addition, my digestive system had come to a grinding halt. I had no appetite and when I did eat, the food would sit like a rock in my stomach for most of the day. The solution was a mostly liquid diet so that I could get some nutrition. By this point I had lost weight and had become weak, but I was still supposed to wait until the day after the full body scan to start my thyroid replacement hormones, almost six weeks without a thyroid or medication. I felt like I was dying, and in essence that is what starts to happen-your body slowly starts to shut down. By this point all of my family had gone home and I was alone. I was unable to function and do even the smallest things for myself. For the first time since this all began, I broke down and I cried... radioactive tears. Crying is good and important at times like these. I needed to hit rock bottom and I did, with a resounding thud. Now it was time to climb out of the hole. 

I needed the medication. I decided to take matters into my own hands and started it the Monday after RAI. Please understand I am not much of a rebel. The nuclear medicine doctor who I worked with before the RAI thought that the endocrinologist’s orders to wait a full week were “unusual” and he had never known anyone to have to wait longer than 24-48 hours after RAI to start medication. That was all the permission I needed. In a matter of just a few days I started to feel a shift.

My litmus test for each new day had become the simple act of opening my eyes. It had gotten to the point that upon opening my eyes, all of the precious equilibrium that my body had established overnight flew out the window. Opening my eyes meant instant dizziness, blurred vision, shakiness, and nausea. Each day after I started the medication when I opened my eyes it was a bit better. Today, one week after starting the medication, I can report that I had a good day. The optimism I feel is energizing and rejuvenating. I am looking forward to discovering my new normal and getting back to my active life. 

Radioactive

I am at 3.5 weeks post op and had my radioactive iodine (RAI) treatment this morning. For the next three days I am in isolation, so this is a perfect time to get caught up with blogging and reflect on the last several weeks.

I started the low iodine diet 2.5 weeks ago. This is often a challenging diet for people, but is essentially what I do already. I have eaten my normal vegan diet but eliminated soy, dark leafy greens, sea vegetables, and I switched to a non-iodized salt. No processed foods and no eating out. The main issue has been related to the hypo symptoms. My digestive system has slowed down and I have found one small meal a day supplemented with juices and smoothies is about all I can handle. I have sincerely enjoyed the many delicious meals my friends and family have shared with me. The variety and creativity has encouraged my appetite.

The purpose of the low iodine diet is to make any remaining thyroid tissue “hungry” for iodine so when you are given the RAI, the iodine depleted cells suck it up, which then kills them. Ideally this is just in the thyroid area, but if thyroid cancer cells have spread any other areas, like the lymph nodes or lungs, it will hopefully also kill those cells, as well as lighting them up on a full body scan. My full body scan is a week from today.

In my reading about RAI, I have learned that people react differently to the treatment. Some people have very few side effects, while some people feel quite ill. At the end of day one, the verdict is still out. I was given 100 millicuries of I-131 in the form of three capsules delivered to me in a glass vial in a lead case. One swallow and it was done. I had been concerned about the two-hour ride home over a mountain pass, but I felt good and it was a stunningly gorgeous day. I enjoyed the clear blue skies, snow covered mountains, and listened to my hero Don Richmond all the way home. I could feel a burning sensation in the throat area as the remnant tissue soaked up the radiation. It was a very unusual feeling, but not painful. I cheered the RAI on – “Go do what you have come here to do!” Since being home, the burning sensation has continued and spread. At one point I woke abruptly from a nap with a hot burning flush and my heart pounding at over 100 beats per minute. It was a scary feeling, but thankfully has not returned. In general I feel pretty awful, but it is hard at this point to distinguish hypo symptoms from RAI symptoms. Either way, I take comfort in the fact that this is a temporary condition and it will be over at some point. “This too shall pass.”

There are a few things I need a little more time to wrap my mind around and hope to write about soon: Recognizing the lessons, even gifts, embedded in an experience like this, the beautiful compliment of Western medicine and alternative therapies I have experienced, and most of all, the overwhelming and amazing support from my family and friends. I have been humbled to the core by this and have not yet found the words to communicate the sincerity of my gratitude.

I close with this video of the song Radioactive by Imagine Dragons. My favorite part is at 2:38 where the little pink dude uses radiation to kick ass. Time for the challenger to rise.

One Week Post Op

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It has been almost been a week since my total thyroidectomy.  After a white-knuckle predawn drive over a snowy mountain pass and passing a half dozen overturned vehicles, we made it safely to St. Francis Medical Center in Colorado Springs. The waiting area, my pre-op room, and my room for the night all had a beautiful view of Pikes Peak and the Rocky Mountains. Before long I headed to the operating room. It is always a surreal experience to be on the operating table looking up at the huge lights while medical professionals buzz around you, and then…wake up in recovery.

I was fortunate (again) that whatever magical drugs and gases the anesthesiologist put into my body did not cause me to be nauseous upon waking. Overall I felt good and bounced back relatively fast. The pain was very manageable. I slept well in my quiet private room with only the standard interruptions for vitals to be checked.

The next morning my surgeon came by at 6:30 am and told me that the surgery went well. He removed the remaining right half of my thyroid and several lymph nodes to assist in staging. He said everything looked good, but the final pathology report would be back in a week. My husband and mother had stayed the night with our dear friends in the Springs who took wonderful care of them. They woke to a healthy breakfast of slow cooked steel oats with figs and cherries and a fresh pressed green juice. Our friends also sent them with a glass of the juice for me, and I can’t begin to tell you how happy I was to drink that elixir! My mom, who loves to try new things, wrote down the recipes so she could make them when we got home. (I will post the recipes soon!) That morning as I prepared to be discharged, I was sad to say goodbye to my husband who had to catch a plane to get back to school, but simultaneously so grateful that he was able to be there with me for the surgery. It meant the world to me to have him and my mom here for this life-changing event.

After being discharged, my mom and I headed for home. It turns out three hours is an awfully long time to be in the car the day after surgery. I did well for the first couple of hours, but by the time we were about 45 minutes from home I started to feel really awful. I finally switched with my mom and drove which helped me stay focused until we got home. Needless to say, I was very happy to be home.

The past week has been punctuated with flowers, visits from friends, walks in the fresh mountain air, and delicious meals delivered, more affirmations of this incredible community in which I live. It has also started to get real, as I settle into the knowledge that this will be a long and challenging journey. Over the last three days my body has started to realize that it is missing a vital organ and I have begun the descent into a hypothyroid state where I will stay through the radioactive iodine ablation (RAI), also known as I-131 treatment, and the full body scan that will check for metastasis and help assess staging. Once that is complete I start taking replacement hormone and begin to find my new normal. In the meantime, my plan is to find pleasure in the simple things in life and take it one day at a time.

Filling My Cup

As I have been preparing for my second surgery, I have been mindful of choices available to me. I can choose what I put in my body, what kind of energy I wish to surround me, and how I envision the upcoming 6 weeks.

Some things I have included in my life...

Taking in nourishing whole foods, juices, and water kefir

Growing fresh greens and sunflower sprouts

Enjoying dear friends, shared meals, and live music,

Seeking out opportunities for yoga, breathing, and hot springs

Reflecting on lessons learned ~ I don’t have control, I can take time to heal, I have amazing family and friends who love me, I am so very fortunate.

Today I went to Ojo Caliente in New Mexico to enjoy a blissful day of soaking and friendship. When I got home I was treated to an incredible gift basket from my studio, my husband is home, and my mom lands in a couple hours. I feel really good~ physically, mentally, and emotionally. Going into this with a full cup I am ready to move forward and eventually past this challenge.

The Backstory

The past several months have been a whirlwind. My thyroid, a gland I had hardly been aware of until this point in my life, is now front stage and center. I found a large lump in my neck in late summer and kept an eye on it for a couple weeks, assuming it was just a swollen lymph node. Since it didn’t go away, I checked in with my primary care doctor who told me that it is not a lump on my lymph nodes, but a lump on my thyroid. She scheduled me to get blood work and an ultrasound. The blood work came back normal, but the ultrasound showed a large vascular nodule on the left lobe of my thyroid. I was referred to an endocrinologist who told me that it would have to be removed, along with half of my thyroid.

A snapshot into my mind at this point: I am a music professor and the chair of the department. Late in the fall semester was not the ideal time to do this-lessons, classes, performances, final exams, juried exams, and final grades all loomed in the near future. However, both the endocrinologist and the surgeon suggested sooner rather than later. An excellent general surgeon in town was able to get me in the day after one of my performances and then I had three weeks to heal before my next performance, performing as a soloist on Bach’s Brandenburg Concerto No. 5.  In addition to this brilliant planning, the surgery fell over Thanksgiving, so I only missed two days of classes.

The surgery went well. I had been terrified of my usual reaction to anesthesia which has been violent vomiting, and told anyone who would listen that I had that problem. The anesthesiologist told me that both forms of anesthesia, drugs and gas, cause nausea, but the drugs a little less so. Whatever cocktail he whipped up for me did the trick. I woke with only the most minor nausea, which dissipated quickly. My amazing husband was there for me as I became alert, and patiently, oh so patiently, fed me ice chips between my numerous naps. I spent the night and was awake around the clock with visits to draw blood, check weight, and check vitals. Despite the usual busy nature of a hospital room, it was a peaceful night and I was surprised at how good I felt overall. My throat was sore from the breathing tube, my voice was hoarse, and there was some mild incision pain, but I handled it all without pain medication.

My top recommendations for an overnight hospital stay include a set of earplugs, lip balm, lavender hand or body lotion, and an iPad. Listening to music, reading, and using a meditation podcast I had downloaded were a fantastic way to pass the time. The next day I saw the surgeon who informed me that the initial biopsy was negative and everything looked good, so they left my right lobe intact. He sent me home that day.

The first week post-op was punctuated by meals delivered by dear friends, flowers from family and friends, and time to watch movies. My husband took amazing care of me and anticipated my every need. I am so lucky to have such an incredible support network.

I headed back to work the following week, in retrospect a week too early. I was tired, but feeling confident that I was well on my way to healing. I got a call from the surgeon that week telling me that the frozen section analysis had to be sent out for a second opinion. I had a dash of concern, but was too busy to worry about it. Later that week I got the final diagnosis: follicular thyroid cancer.

During the initial appointment with the endocrinologist, she had told me that about 80% of thyroid nodules are benign. I went into this thinking I was going to have a surgery just for reassurance and the initial biopsy had my hopes up that was the case. I followed up with the endocrinologist. She told me that 80% of all thyroid cancers are papillary. Again I fell into that more marginal group. Follicular thyroid cancer accounts for only 10-15% of all diagnosed thyroid cancers, and thyroid cancer overall is far less common than others. Follicular thyroid cancer is second to papillary in terms of response to treatment and prognosis. It is more aggressive than papillary, but not nearly as aggressive as the other two kinds.

Plan A was to enter into 2013 healing and getting this year behind us. Plan B is to have total thyroidectomy followed by radioactive iodine treatment to ablate the remaining small amount of thyroid tissue, then followed by a full body scan to look for metastasis and complete staging. Age is on my side: Stage I if it has not metastasized, and Stage II if it has. Overall the prognosis is good, for which I am grateful. I look forward to greeting the journey to come with grace, patience, and courage.