RAI – A Mama's Blog

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I have been on synthroid and cytomel for just over a week, and I am feeling so much better! I feel like I am in my thirties again- not my nineties. I know I am not back to my “old self,” yet, but I wonder if there is such a thing.

I don’t think mentally, I will ever be back to my “old self.” What I mean by that is, I don’t think I can ever go back to that time before I had cancer- that time was an innocence. I didn’t have to think about being sick. I didn’t have to worry about how my boys were handling my cancer. I didn’t have to think about taking medication the moment I woke up every morning. I didn’t have to worry about doctors, lost time at work, on-going medical and health care, medical bills, insurance denials for some of the care I need, and the one worry that will always be in the back of my mind- what if the cancer comes back?

I had my full body scan today. They look to see if there is any remaining thyroid tissue in your body- to see how effective the radioactive iodine treatment (RAI) was. If there is no remaining thyroid tissue, then I will be essentially “cancer free.” If there is remaining thyroid tissue, I believe I will be given another dose of RAI.

Right before my surgery, I had a PET scan to see if the cancer had spread to any other areas in my body. Fortunately, it had not. But I don’t like being scanned. The machines make me claustrophobic. The machine today, looked more spacious than the PET scan machine, but after they started the machine lifted me up, and there was a screen just millimeters away from my face. I started feeling very panicked, and almost called the technician over to stop. But I closed my eyes, and just tried to imagine myself somewhere else.

It worked, and I calmed down after a few minutes. Then, after about fifteen minutes, the screen moved away from my face. As I was lying there with my eyes closed, it just hit me how tired I am of all of this. Before being diagnosed with thyroid cancer, I was so healthy! I would catch a few colds every year, but that was it. It kind of just hit me, that this was my future. Ultrasounds, scans, and blood work.

I am very grateful and happy most days that the cancer I have is so treatable, and basically curable. When I was first diagnosed with thyroid cancer, every medical person told me if I had to have cancer, this was the kind to have. I thought it was no big deal- I’d have the surgery and move on.

Cancer is cancer, and no matter which kind you have, it is still a major intrusion and interruption into your life, and the lives of your family. There are side affects, mentally, physically, and emotionally for not just the patient, but for everyone in their circle. There is no such thing as a “good cancer” or a “better cancer” to have.

Two months ago, I wouldn’t have written this blog post. I would have been trying to stay “happy” and “positive.” While I still feel I have a very positive attitude overall, some days are hard, exhausting, scary, lonely, and isolating. For me, it is important acknowledge this and to mourn the loss of the care-free health that I had previously. I believe it is okay to feel this way at times, and more importantly it is healthy to allow yourself these feelings.

Every day is getting better, and I hope to have the results of the scan early next week. If I am declared “cancer free”, then that is it for now- other than having my synthroid medication adjusted. I will have to go in every six months for an ultrasound and blood work to watch for any signs of reoccurrence. I am starting to picture my life in six month blocks. Six months where I don’t have to take it one day at a time. Six months means I can make plans and start living life again.

Six months- I know that is a gift, and a gift I will gladly take. There is a saying, you don’t get a rainbow without rain, and I find that very true for cancer patients and survivors. For every rainbow you receive, you’ve endured a lot of rain. I am tired of the rain, and am looking forward to the rainbows.

Thyroid Cancer- Low Iodine Diet & Waiting for Radioactive Iodine Treatment

This past week has been a nightmare- an absolutely awful nightmare. I don’t even know where to begin.

As I wrote previously, my surgeon said one of the proactive things I could do before having my thyroidectomy and neck dissection was make an appointment with an endocrinologist. So I did. One he recommended at one of the hospitals in my state, Colorado, with an excellent reputation.

When I made the appointment back in MAY, I specifically pointed out to the scheduler, that my surgery was June 12th, and the appointment with the endocrinologist wasn’t until this past Tuesday- July 21st. She assured me that was fine. I asked her again- that six weeks wasn’t too long to go. She told me again, it was fine. These are the “experts” so I figured I was in good hands.

Six weeks later I am a hormonal, emotional, tired, wiped out mess. I feel like I have aged 50 years in the past six weeks. Evidently the hormone your thyroid produces regulates all kinds of bodily functions- like energy levels, emotions, metabolism, memory, concentration- just to name a few. When I met with the endocrinologist on Tuesday, Dr. S., (another Dr. S.) she was shocked to find out I had not been on any thyroid hormone since my surgery. She looked at me and said, “My god, I bet you feel like crap.” That is one part they did get right. She told me they would rush my radioactive iodine treatment (RAI). Only problem- I haven’t been on a low iodine diet.

I called a week after my surgery and asked this same office if I should be on a low iodine diet. They told me no- I would receive all that information at my appointment. I pointed out again, that I had a six week time frame, and they told me it was fine. I’d learn everything about the diet during my appointment.

Since I can no longer manage this mess by myself, my sister, Vanessa, called bothered them until she got the person on the line that could help. That is how we found out the scheduler had “old” information. The treatment coordinator, B., told her I could have received RAI three weeks after surgery, but I have to be on the low iodine diet now for ten days. I could have started the diet the week I called to ask them about the low iodine diet, and have had all of this behind me. But now I have almost two more weeks of “feeling like crap” and trying to figure out a diet and what I can and can’t eat. Vanessa expressed the displeasure this has caused me, and the state I am in. B. apologized and sent me a personal e-mail apologizing as well. Vanessa scheduled the RAI treatment for me, for August 3.

I am so mad and beyond frustrated at this hospital. I talked to a friend who is a nurse, who told me this is negligence, and there is no excuse for something like this happening. But, what can I do? It isn’t B.’s fault. It is one of those nightmare things that you never imagine will happen to you, but it does. So somehow, my family and I have to get through the next 2 weeks to make it to the appointment where I can receive the RAI treatment.

I still don’t know how long after the RAI treatment I have to wait until I can receive the replacement thyroid hormone. As it is now, it will be 8 weeks and counting. In the meantime, I am losing more energy every day, my boys are suffering, and I am missing work.

I am having a hard time with this blog post. I said I was taking a break from it two weeks ago, but then I said I wasn’t, but I am going to be forced to now. I mentally and physically do not have the energy to write much until I am finally on the thyroid replacement hormone. For now, what energy I do have, I have to put into my boys and into my health. I will try to post quick updates on Twitter when I can.

I appreciate any thoughts and prayers you can send my way- two weeks seems like an eternity right now, but there is nothing left to do, except get through them. Thanks again to everyone for all their support, love, and help. I literally could not do this without my family and friends. Love you all.

Heather