The Camel Broke Its Back Today

I've been doing really well since learning that the tissue removed during surgery was malignant. I've only cried once and that was more of a happy cry as I pondered the overwhelming blessings I was on the receiving end of, even in spite of the biopsy bad news. Today I had a meltdown. There's no other way to describe it. I'm back on track now, actually feeling better than before the day unraveled. Treatment is still scheduled for next Friday but for about an hour today, I was unsure if I wanted to go forward with it. Here's the replay:

As I mentioned before, there has been some difficulty (from my perspective as the patient) in getting all the doctors' plans coordinated and elucidated in a way that I understood. The endocrinologist is in charge of the thyroid-specific issues (Synthroid dose, administering Thyrogen shots, etc.) and the oncologist is in charge of the radiation-specific issues (the RI pill, explaining the low-iodine diet and isolation guidelines.) These doctors work together frequently and I'm entirely pleased with their skill and professional knowledge, but they're in different hospitals so all the coordinating happens over the phone. The difficulty is that all of these issues have relevant steps in the plan and if one step isn't taken in the right order, the whole process can be delayed or executed less effectively.

I'm not the type to question physicians unless I really detect a gap in my understanding of the plan and my role in it. However, I had detected such a gap about two weeks ago and in spite of my best efforts to get clarification, I was still left with no clear explanation about one step in particular (I'll explain in a minute.) As the day of RI pill administration was set and began to draw closer, this particular step therefore had less and less time to be completed. I called everyone I could think of in both offices but kept getting answers that didn't answer the question! I'll try to explain it without losing you in the unnecessary details.

There are 2 strengths of the RI pill; 30 millicurries and 100. Taking the 100 is preferable from the "cure" perspective since it really blasts away the remaining thyroid and/or cancer cells. However, if the remaining thyroid isn't sucking up much iodine, then using the stronger dose isn't optimal because it leaves radiation floating around the body doing its job in places that don't need it. So to determine which dose to use, an iodine uptake test is performed which shows how hungry the remaining thyroid is for iodine. This test is the step I have been waiting to complete so that the oncologist can determine whether to use the 30 or 100 dose. I thought for sure that once the Thyrogen shots arrived at the drs. office, the uptake test would be scheduled. I even had the paperwork to take to the lab to have it done (which is why I REALLY thought it was a necessary step! I have the prescription papers already filled out by the doctor!)

I waited a few days to hear back from the oncology office and finally called to inquire about scheduling it. That's where the conflict started. Depending on whom I talked with, I got a different answer. Or lack of an answer and a promise to check into it instead. I called the endocrinologist to see if she knew the answer, but was given more confusing explanations there. I began to think that there was some confusion between the older protocol (where patients stop taking Synthroid meds and let all thyroid function cease over a 6-week period) and the newer protocol where the patient continues taking Synthroid and then takes the 2 super-stimulating Thyrogen shots just before the RI pill. OK, if you're still following me, pat yourself on the back! This is hard to follow if you aren't in the middle of it! I had to remind some people that I had a sub-thyroidectomy, not a total (sub leaves a sliver of the gland to protect the parathyroid, but let's not revisit that right now.) I had to remind them that I was still taking Synthroid and hadn't started the low-iodine diet yet. I started to feel a bit frustrated and worried that there wasn't going to be time to get the uptake test done before the pill was given, but how would the pill's dose be determined without the uptake test? That was the main question and it seemed like it was the only answer no one could provide.

Today I was actually planning to call a friend who works in the radiology department to see if she knew the answer since I know she does the test in question. But before I could call her, the oncologist's secretary called to let me know that the doctor had ordered the 30 dose pill. I felt my heart drop a little because I had hoped to get the stronger dose and be done with the process (remember the doctor saying, "I hope to see you the day you take the pill and then not have to see you ever again" ??? That's when you take the 100 dose.) My heart went to my stomach when she followed up with: "You'll have to do the process again in 6 months with the 100 dose. When would you like to schedule?" All of a sudden, I felt like the rug had been whipped out from under my feet and whatever I replied with is lost to me now. I think I wrote down a date in January, but I don't remember how I got to that point.

I hung up and went down to Bob's office to tell him the news. At that point I didn't feel angry or frustrated as much as I just felt deflated. The thought of going through everything again (low-iodine diet, isolation and the kids away for a week, another radiation dose, insurance stuff, etc.) was too much at that point to think about. And not because I don't think we couldn't manage it or that I hadn't considered it to be the path we would have to walk, if this first round doesn't do the trick (which I fully expect it to.) Mostly just because that gap, that unanswered question about the uptake test, was still in front of me and I knew it was likely the reason why the 30 dose had been ordered.

As I told Bob the news, he grew understandably irate. It seemed like the very well-ordered protocol we had been following the last 6 weeks was suddenly a jumble of hurried-up decisions and strings left untied. Bob described it as only a man would: "It's like all of a sudden we're calling a bunch of audibles at the line." It's scary that I know what that means, by the way! I describe it as a woman would: "It's like I went from feeling like I was a partner in the process to being a child ordered here or there without knowing why." At that point, the camel's back gave out and I had a good ol' buckets-of-tears/snot-snorting/Kleenex-crumpling/Why-me sob fest. It was also at that point (or a few minutes after) that Bob decided I needed to speak with the doctor himself and eliminate the office staff messengers. I agreed, although as stated before, I really don't like to rock the doctor boat. However, I knew I couldn't go forward with the RI pill until I had a clear answer as to why the uptake test had not been performed before choosing the radiation dose.

Poor Kate was the secretary who answered the phone when I called, still sniffling and trying to force words through my tightened throat. I tried to calmly explain that I just had to speak with the doctor himself about my treatment plan because I was now so confused and wasn't sure if I could go forward with the next week's plan until I had those answers. At least that's what I think I said. I could tell she took me seriously because she paged him while he was with another patient. 10 minutes later, I was on the phone with the doctor himself.

Long story short, he explained why the uptake test wasn't done (even though it had been prescribed the day we met with him)....it has to do as I suspected with the Thryogen protocol and insurance issues. He also said that because I have small children in the house, the 30 dose wouldn't be harmful to them (he actually said I could be around them, as long as I didn't lick them to which I replied, "But I love to lick the children!" LOL) I told him, however, that we had already planned for them to be out of the house for well over the recommended period of time so that wasn't a concern. He said that the 30 dose was sufficient to kill off the remaining thyroid tissue and the 100 dose would only be done later if tests indicated that all the cells hadn't been ablated in the body. I explained that I'd really prefer to be efficient and start with the 100 dose rather than risk having to repeat the whole process again later anyway. The thought of another round in 6 months, when I could have wrapped up the process after 1 dose, was really disheartening to me. I said all this through leftover sobs and I think I really had him on his heels. He said, "I typically don't make women cry!" I apologized profusely and said I usually don't call doctors in the middle of meltdowns either.

In the end, he agreed to order the 100 dose even though the uptake test wasn't done. He said that years ago when all RI patients were kept in the hospital during isolation, only the 100 dose was used. It wasn't until they began to let patients return home for isolation that the 30 dose came into use. So taking the 100 dose without doing the uptake test is not novel; it's just not the standard plan anymore.

Well, that's the nutshell version of today's events. We're back on track and actually, the path is a little more straightened out (see....didn't I tell you He would be working on that ;-) I also had my first low-iodine meal tonight for dinner and it was actually quite yummy! Tons of thanks to Christine, my multiple-mom friend, for cooking up the wonderful chicken & pepper pasta dish. I'm going to have more for lunch tomorrow and can't wait. That's if Bob doesn't polish off the rest tonight. He just came upstairs and told me how absolutely delicious the food was. I guess I'll have to learn to make it myself now!

Thanks for staying with me through this journey. I am well-covered in prayer and lots of hands-on comfort/encouragement/help. I still feel incredibly blessed.

In Him,