Tuesday, March 26, 2013

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. 

Wednesday, March 13, 2013


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.