RAI of Hope

My nervously awaited Radioactive Iodine (RAI) treatment phase is almost over (at least for now – maybe forever?!) This treatment is indicated for many Differentiated Thyroid Cancer patients after thyroidectomy, and with my 11 malignant neck lymph nodes found at surgery, I was due for a fairly hefty dose (150 mci). As with most aspects of my cancer treatment, I researched a great deal about this treatment and its repercussions. Of course,  a lot of what I read on the Internet was not positive. The long-term repercussions in my case are still unknown, as certain side effects may not even develop for weeks or months. This process started with an endocrinologist appointment, who then made an appointment with their affiliated Radiation Oncology department. Rad Onc would be administering the RAI. For 2 weeks prior to the RAI, I had to go on a Low Iodine Diet (LID), which, for me, is one of the worst parts of the whole ordeal. Being on a healthy diet for years, due to my high cholesterol, has become part of my normal routine, and I am used to controlling what I eat for health reasons, so I thought this would be relatively easy. I was wrong. Although I appreciate the wonderful creative recipes that ThyCa.org provides, and somewhat enjoyed a couple of these recipes (the griddle cakes and chili, in particular), food without dairy just isn’t very satisfying. Also, with my extensive online research, I learned of the varying opinions and controversies regarding the diet, and I grew more worried that what I was eating actually might contain a lot of iodine. Or maybe not. In the end, I hardly ate anything, for fear that it was silently laden with iodine, which might interfere with my treatment. The premise of the diet (and according to most doctors, it does work) is that if I starve my remnant thyroid cells of iodine, these same cells will absorb the radioiodine like a sponge and the treatment will work better. The goal is for the RAI to ablate the thyroid remnants and kill any remaining thyroid cancer  cells wherever they may be in the body. So, during the 16 days I was on this diet, I went to a wedding, a tailgate, and a cookout…where the only things I could eat were carrot sticks and cucumber slices (without dressing, of course). It got to the point where everything just made me queasy because nothing was appetizing. I lost 6 pounds in just the first week. The countdown towards RAI (and the end of the diet) began.

The RAI week is very busy for the patient. On both Monday and Tuesday mornings, I received some blood tests and Thyrogen shots at the hospital. I was “fortunate” enough to find some Thyrogen. I also didn’t take “no” for an answer when my doctor and hospital told me that they couldn’t get any Thyrogen for me until 2012…you see, there’s a severe worldwide shortage of Thyrogen. Thyrogen, without getting too technical, prepares the body for the RAI, so that the treatment works. The alternative to Thyrogen or the “old-fashioned way” is to withdraw from our necessary thyroid hormone pills for a few weeks and become severely hypothyroid. Many people have awful side effects from this withdrawal, which may take weeks or months for the body to recover from. I work full-time and commute to work (driving could even become dangerous under this condition) so I did not want this option. So, when my doctor told me the bad news about not getting the Thyrogen, I started making phone calls. I called my insurance company to find out who their affiliated specialty pharmacy is. I contacted this pharmacy, who didn’t have any Thyrogen, but was aware of the shortage and suggested I call local retail pharmacies to see if anyone still had this important drug in stock. Thyrogen has a 3-year shelf life, so it was possible that some was sitting in a fridge somewhere in a local pharmacy. I called a local Walgreens and they did not have any. I asked if they could look up in their computer system to see if any Walgreens in the vicinity did have any in stock. He said that the system wasn’t always accurate, but it was worth a shot. He gave me a few phone numbers and I started calling. Finally, the last phone number the pharmacist gave me was the golden ticket! They did have Thyrogen in stock, so I left work with my insulated lunchbag, sped to the Walgreens (about 40 minutes away), drove home to place it safely in our fridge, and returned to work jubilantly.

On Wednesday, both Curt and I drove separately to the hospital, where I would get more bloodwork, then, finally, the RAI. Despite the crazy traffic heading to the hospital (it took us about an hour-and-a-half instead of a half hour), we arrived early. The radiation oncologist and nuclear medicine doctor both went over the safety precautions again and answered questions. Curt needed to leave the patient room and the doctor wheeled in a cart. On this cart was a heavy looking lead box and a Geiger counter. Inside the lead box was a lead cannister. Inside the lead cannister (kind of like Russian dolls) was the actual pill. We could not touch the pill, so she placed it in a cup. I was told to very quickly swallow this pill and use as much water as I  needed. I normally have a hard time swallowing large pills and was a little nervous about this for days. What if this highly radioactive pill gets stuck in my throat?? So, I knew what I needed to do…just chug the pill with no regrets as if my life depended on it. Maybe it does. I’ve never swallowed a pill so fast in my life. The big pill just slid down my throat and I drank 2 cups of water to make sure it was down. The doc measured my neck with a Geiger Counter and said “It’s down. Good. Now go!” The docs then scattered, as they didn’t want to be around “Chernobyl on Legs”…so, with my hands still trembling, I left the room, called to Curt in the waiting room, and we hurriedly left. Curt needed to stay 6 feet away from me and we drove home separately. I had taken prescription strength anti-nausea meds, and, luckily, felt fine. I didn’t feel radioactive at all.

Now the isolation…I was given restrictions that basically meant I needed to be alone for 7 days due to the radiation I was emitting. I needed to stay 6 feet away from people (and pets), sleep in my own bed, cook my own food, use a separate bathroom, flush twice, etc. The rules go on and on. There is also a lot of controversy and variation from hospital to hospital on these restrictions. In many hospitals, I would’ve been kept in the hospital for a few days, until I was less radioactive. In a way, that would’ve been easier. At first, it was lonely, frustrating, and stressful. But, by the 4th day or so, I was almost enjoying the “me” time alone in the attic! For the first time in a long time, I had time to read, sketch, learn new guitar chords, online shop, henna my hair. I Photoshopped the photos I took for a wedding, exercised, sang, researched new music on YouTube, texted, social networked…the time actually went pretty quickly and, here I am, on the last day of isolation! There is a possibility I will need this treatment again in a year. If so, I’m not looking forward to the diet, bloodwork, shots, radiation, possible side effects…but I won’t dread the isolation so much!

Now my hope is that this RAI will cure my cancer….