cancer

Getting Thyrogen is hard (if not impossible)

As I’ve learned over the last several months, getting Thyrogen for thyroid cancer treatment can be extremely hard, if not impossible or incredibly expensive. These nine pages of notes to my doctor, my insurance company (Blue Cross/Blue Shield), specialty pharmacies like AllianceRx (Walgreens), Accredo, CVS specialty pharmacy, and the Thyrogen manufacturer, over a period of five weeks demonstrates how hard it is to get Thyrogen when you need it.

After going through all of this, my best suggestion is that if you’re having a hard time getting Thyrogen for your thyroid cancer treatment, call the people at thyrogen.com (ThyrogenOne). Because a lot of patients have a hard time getting Thyrogen, they seem to understand the process better than anyone, including my doctor’s office and my insurance company.

The cancer shirt

You can tell sometimes when doctors have something they don’t want to tell you. One of my doctors is an older “manly man” kind of guy, and while we’ve had some interesting conversations, they’ve never been about clothes. But the last time I saw him he walked in and said, “That’s an interesting shirt. What does it say on it? Where did you get it?” The conversation felt weird, and then I realized he was stalling. Finally he said, “Well, the biopsy shows that you have cancer.”

So now, ever time I put that shirt on, like today, I think of that conversation.

The biopsy of the tissue from your surgery shows that you have cancer, but ... alvin December 18, 2018 - 6:23am

I’m still in that time period where the doctor said, “The biopsy of the tissue from your surgery shows that you have cancer, but I don’t think they’re right,” so we’re waiting on the results of a DNA test.

*waiting*

*taps fingers on desk*

La la la la ...

I think they made a movie about this

After my surgery last week I went to see the doctor on Wednesday, and to my surprise he handed me a piece of paper that says that the biopsy on the body stuff he removed shows that I have cancer. But then he quickly added that he thinks it’s a mistake. He did two surgeries that day, me and another person, and he said that he knew going in that the other person had cancer, but the lab test results show that I have cancer and the other person did not test positive. So he hopes the results got reversed somehow.

To get to the truthiness of the matter they took a DNA sample from me and they’re going to compare that to the cancerous material that’s still in the lab. (I didn’t think to ask how long they keep that stuff laying around.) He said it could take ten days before they know the result. I think they’ve made movies about this, but I don’t think I’ll be racking up any huge credit card bills or anything like that. ;)

3M apparently knew about PFOA/PFOS dangers since 1970s

Apparently 3M, which many people think of as a nice company, has known about the dangers of PFOA and PFOS — which is used to make Teflon and other products — for a long time. Per this story, “Internal studies and other documents show that 3M knew by the 1970s that PFOA and PFOS were toxic and accumulating in people's blood.”

Day 20 of the low iodine diet (before radioactive iodine treatment)

Dear Diary: Day 20 of not having a thyroid (because of thyroid cancer), not taking thyroid medicine, and the low-iodine diet.

I didn’t know if a person could lose weight without a thyroid, but I’ve dropped six pounds so far. In all I’ve dropped 20 pounds since I finished writing the Scala Cookbook (when I was working around the clock, not exercising, and eating crap).

Blood pressure is usually about 96/56, heart rate 48-54 BPM, and that’s without taking any heart meds. (I’d pass out for sure if I took those.) Low on energy and can’t take my usual long walks without getting the shakes.

Hopefully I’ll pass the blood test on Wednesday — my TSH level needs to be 30 or higher — so I can start the radiation treatment.

~ a note from June 16, 2014, after having my thyroid removed