Friday, September 28, 2012

Down but not Out

2010 was a rough year for me, medically speaking.  In January I had a mammogram that was concerning, so I had to go to Providence Hospital for a secondary mammogram. When they called to tell me the news, there was a sense of urgency to get in as quickly as possible. They scheduled a two hour appt for more X-rays and possible ultrasound. It seemed to me that the positioning for the X-rays was more intense and took longer than the first round. The tech was outstanding, but it was still more uncomfortable than usual. I then went into a waiting room, still in my gown, to wait for the next step: ultrasound or go home. When the tech came in to tell me the results, I was calm till she said it all looked good and then I cried. I guess I didn't realize how tense I was waiting to hear. 

Also in January, I began my journey with Waldenstrom's at the office of my PCP, resulting in a diagnosis on March 31. Thyroid cancer was diagnosed in October 2010 with surgery in December. In between those dates, I received a letter from my gynecologist that my PAP was abnormal and I needed a cervical biopsy. 

My lovely friend and neighbor drove me to the office for the biopsy. I'd had an endometrial biopsy years ago and I remembered that the doctor I had at the time had ordered something to relax me before hand and some pain medication for afterwards. I had taken something for the expected pain just before I went in, so my friend was there to drive. In the exam room they took my history and asked about my last period. I was in perimenopause and hadn't had a period in about 9 months-until I went in for my thyroidectomy

The nurse discussed that with the doctor and I was told were were adding an endometrial biopsy to the already scheduled cervical biopsy. I remembered how unpleasant the previous one had been-even though I was a bit sedated that time. I mentioned that to my doctor, a great lady about my age, and she was amazed. She said she had endometrial biopsies without anything and it was fine. I said, "you are tougher than I am. In fact, pretty much everyone is tougher than I am." She said I'd be fine. I hate to sound arrogant, but I was right and she was wrong.

I managed to get through without making a scene, mostly. It was about like I remembered and I was glad I had taken something for the pain before coming in. I made it out to the car, but I was surely grateful for the kindness of my friend driving me home. I went to bed, slept for two hours, got up and felt okay.

In 2010 I had a unique opportunity to see why they call what doctors do "practice" because I was starting to feel like a punching bag clown. It seemed like every time I bounced back, there was another biopsy to do. However much I complain, though, I am glad my doctors are thorough and I'd be in a mess if the cancers I have had not been found. 

Scripture reference: Corinthians 4:8-9

Wednesday, September 12, 2012

In Solitary

I didn't have any of the dreaded side effects from the RAI, except headaches which were not severe and they responded to Excedrin. The hardest part was the isolation. The body gives off radiation for some time after RAI therapy. Some patients are put in the hospital for a few days after treatment, staying in a special isolation room to prevent others from being exposed to radiation. Once you are allowed to go home after treatment, you must follow instructions on how to protect others from radiation exposure.

I was surprised at how difficult the isolation was. Bruce and I could only be in the same room for one hour a day and had to stay 6 feet apart. He was chasing me around trying to get a hug. And I wanted to be caught! I slept in the guest room, used a different bathroom, had to wash my eating utensils by hand. We could not be in a car together for more than an hour, not that there was anywhere I could go without threatening people with radiation.  I couldn't prepare food for him (or even touch his utensils), launder clothes or linens together. I had to flush the toilet three times whenever I used it.

As much as I hated being in solitary, I was actually pretty nervous about coming out of isolation and also allowing anyone to use the guest room or bathroom for many months afterwards.

Apparently, there is some consternation about allowing irradiated patients go home for isolation. A friend sent me an article from USA Today about an investigation that found one case where a patient going home on the bus in NYC set of the radiation detectors as the bus passed through the LIncoln Tunnel. About 7% of patients go to a hotel instead of going home. In one such incident, nuclear plant workers set off radiation alarms when they reported to work. It was later found that they had stayed in a hotel where linens from an RAI patient were washed together with other bedding and then put back into use. 

The International Atomic Energy Agency notes that when releasing patients treated with I-131, unanticipated alarms are possible, or even likely, by radiation-detection systems at international borders, airports, train stations, bridges, tunnels, and other areas.  Therefore, if travel is planned within four months of RAI therapy, you should carry a form from the doctor explaining your condition.

There is a great website for patients about RAI therapy: It has a tremendous amount of information including low iodine recipes and other tips. They also have a humor page which includes a song to the tune of "Leavin' on a Jet Plane..."

All my bags are packed
I'm ready to glow
I'm standing here
Outside the door
With "Danger: Radiation!" on the sign

But the floor is covered
and so's the phone
the doctors hover
they're ready to go
already I'm so scared 'bout R A I

So kiss me and smile for me
Tell me that you'll call for me
Close the door, let's start this nuking show
'Cuz I'm stayin' in i-so-la-tion
Don't know when I'll be home again
Oh babe, I hate to glow.

Scripture reference: Genesis 2:18

Tuesday, September 4, 2012

Radioactive Me

The next step in the thyroid saga was to make a decision on the radioactive iodine (RAI). For many reasons, it is not a clear cut decision to use the radioactive iodine. The endocrinologist suggested that we think about it and plan, if we decide to proceed, to do it in March. I was glad to have the extra time to research and possibly get a visit with my parents in Texas before I get radioactive. Apparently, I can set off alarms at the airport for months after treatment.

The decision was difficult because it is the least aggressive form of thyroid cancer, they believed that the surgeon got it all, and the RAI can result in slightly increased rate of leukemia. Since I already have two cancers, that was a concern for me. RAI can also cause permanent changes to the salivary glands that result in dry mouth or taste changes. On the other hand, RAI  is only absorbed and concentrated by the thyroid. The treatment destroys any remaining thyroid tissue or cancer cells but does not harm other tissue in the body. It increases the survival rate of thyroid cancer patients.

Bruce and I prayed and talked about it, did the research and went back in to discuss with the endocrinologist. I even asked him what he would do in my place and he said it was a difficult decision and that he could support either choice. We decided to proceed with the I-131(RAI).

First, they put me on what I defined as the "no-food diet." It is actually a low iodine diet, but who knew how many foods that eliminates! No dairy, no egg, no cheese, no soy, no processed food of any kind-no bread, pancake mix, canned foods, NO CHOCOLATE!! I can have any fruit (except rhubarb) and any veggie (except potato skin) and 5 oz of meat per day. Yikes!  The only upside was the potential for weight loss. I have decided to will my body to science because after two weeks I lost ZERO pounds. How is that even possible? If they figure it out they can solve the energy crisis.

For two days prior to the radiation,  I went into the office for Thyrogen injections. This is recombinant human TSH (thyroid stimulating hormone.) The purpose of the diet is to starve any thyroid tissue of iodine and the purpose of the thyrogen is to make it hyperactive. This would give me the greatest chance of absorbing the most iodine possible so that the radiation is effective.

I opted not to do the diagnostic test first because it also requires I-131 (but a smaller dose) and is likely to be inconclusive anyway. It is effective if positive, but it is unlikely to give a reliable negative result. So, I'd probably end up doing the radiation anyway. And I would have to do the 2 week diet and the injections prior to the diagnostic test because if they decide to do the radiation after the test, they do it immediately.

Finally, I went in for the RAI. My endocrinologist met me at his office and took me through the clinic to an employee only area. We came to a door with a nuclear warning sign and he unlocked it and took me inside. He put on lead lined gloves and brought out a lead container.  He opened the container and there was  tiny pill in a small cup. 

He handed me a glass of water and I had a moment of panic when he told me to take the pill straight from the cup and not to touch it with my hands. I can't touch it but I can put it on my tongue and swallow? I steeled myself and swallowed it. Once I took it he hustled me out of there as if I were going to go off like a bomb.

I got out to my car, sat down and cried. It's not easy being radioactive. 

Scripture reference: Romans 8:38-39