Saturday, March 23, 2013

Stupid Radiation

Here's where we are:

Tests show that there's still some thyroid tissue in me somewhere. Most likely, it's just a speck in my neck that the doctor missed in the surgery (because it's about impossible to get it all out surgically- it just doesn't happen). But there is a minuscule chance that it's a bit of cancer that's broken off and is growing somewhere inappropriate.

With thyroid cancer, treatment is pretty straightforward because thyroid tissue is completely killable. Your thyroid absorbs iodine. Thus, if you deprive your body of iodine for a few days, then add in some iodine laced with radiation, any thyroid tissue you have will absorb the iodine and be ablated by the radiation. Cool, right? So then, any thyroid tissue (or cancer) that lurking anywhere will be fried and you'll be all 99.9% good to go.

We've been looking at the radiation therapy since the cancer was first diagnosed in late November. Because my tumor was big but not huge, radiation is not mandatory but not immediately ruled out either. I'm in the gray area.

Doc. #1 was on the fence (but seemed to be leaning toward radiation) and referred me to Doc. #2 to make the final decision. Doc. #2 said yes, let's do radiation but then his office completely screwed up the scheduling process (and acted like it was my fault). So I made my way to Doc. #3. I was finally able to get an appointment at the end of February.

Doc. #3 also approved radiation, ordered it, sent me for the consult with nuclear medicine, and everything seemed to be moving right along. The pharmacy company called me so that I could personally authorize the release of the meds to the clinic. I did. The head nurse at the clinic said she would call me to schedule the radiation treatment when she had the meds in hand.

Now, scheduling the radiation is easy for her. She just puts my name in the schedule a couple of times and clicks "save". For me, it's a process of coordinating work and lesson plans and substitutes. Child care and Skype and cell phones (that will be exposed to radiation and will have to be replaced). Cakes and places to stay when I can't be near my kids because I'm radioactive. Hours in the car to get there and back for daily injections. There's a lot to do. And I was hoping to have it all settled before my surgery on Tuesday.

So when the pharmacy company called last week and said that the meds would be delivered on March 14th, I was pretty excited. I thought I could have the schedule nailed down by the 18th, easily.

Boy, was I wrong.

When I didn't hear from the clinic, I called up there on the 21st. Scheduling redirected me to endocrinology who told me they could only do drug refills. Endocrinology redirected me back to scheduling who told me I need endocrinology and transferred me back. This went on for about 40 minutes. Finally, one of those departments said, "Oh! You need Prolia. I'll transfer you to Infusion," and I was sent to a whole new department. My treatment has NOTHING to do with Prolia or the Infusion Department.

I was frustrated.

I remembered the doctor's instructions: "E-mail me when you're curious about something but before you get irritated." So I e-mailed him:

"Please help? I called up there today to see about scheduling the I131 treatment so I can get the time off of work. I was bounced back and forth between scheduling and endocrinology a few times. Finally, they said what I needed was prolia(?) and they transferred me to infusion to leave a message.

Your office told me last week that I could schedule when they had the Thyrogen in hand. The pharmacy company called me Thursday to say it had been delivered there. What am I supposed to do next?

Thank you,"

The auto reply said he was out of the office for the week.

Whatever, I'll try one more call. On that call, after only three or four transfers, I was put through to the head nurse who I'd spoken to before. The one who said she'd call me when she go the meds. Finally! Someone who knows what I'm talking about!

She checked the computer and said that the meds had not been delivered, and she'd call me back when they got there.

She finally called me back on Thursday that the meds were there! Hooray! After... where are we now, three months?... it was finally time to get this part over with! She took my preferred dates and  said she'd call back after she coordinated with nuclear medicine.

I had a small hope that she'd call back yesterday and it would all be settled before spring break... but I wasn't going to hold my breath.

Are you caught up, so far?

So, this morning, I got this e-mail reply from the doctor, cc'd to the nurses:

"Head Nurse:

Please contact her ASAP and let me know the status.

Doc. #3"

Oh, no! That nurse had been so nice on the phone. I didn't want her to be in trouble since I'd talked to her after I sent that e-mail. So I quickly sent the doctor this:

"Head Nurse called me Thursday- she has the Thyrogen :) 
She was going to coordinate with nuclear medicine and then let me know the dates so that I can get the time off of work.

Thank you,"

I thought it would be OK. I had hope that I might still, maybe, somehow, get the radiation scheduled before Tuesday's surgery. And then this e-mail rolled in from the head nurse:

"I called  her on Friday (3/22) to inform her that the drug had been delivered; she requested the last week of April.  I have notified NM of her requested dates.   I apologize that she is continually  emailing you as I had told her that when I had the drug in hand, I would notify her.  I am not sure where she got the info re Prolia."

Ummmm... no. Just... no. First, we spoke on Thursday, not yesterday, and you said you would get right back to me. You didn't. Not that I expected anything different. Next, you don't need to apologize that I'm "continually e-mailing" and I told you on the phone about the Prolia mix-up. It's not my fault if you didn't pay attention. You know what else you should pay attention to? The cc list on the e-mail when you hit "reply all".

So I sent an e-mail apologizing for bothering everyone and started looking for an endocrinologist in Columbus, just in case this mess gets even more fun.

Yay for exit strategies.

I probably wouldn't be this concerned about the radiation if it weren't for the tumor in my uterus. Yeah. That's got me a little overly cautious. And irritable, apparently.

And, I swear, the next person who tries to tell me that thyroid cancer is the "easy" cancer to treat is going to hear some uncomfortable truths about themselves.

*Palm Sunday Update*

E-mail from Doc. #3 this morning in response to my apologizing for bothering everyone:

"No worries at all, I was out of town and wanted to make sure it was handled. Obviously you were given some erronious info, and that is what the email is for, so don't feel bad. Our fault.  I'd strongly prefer you keep me posted of any confusion, that is what the email is for.

My nurses didn't realize that your email was a few days old, so disregard those comments.

Start the low iodine diet two weeks before the treatment, and let me know if there is any further confusion.

Doc. #3"

So I feel a little better. Still wish I knew when radiation will be so it's one less thing to worry about. But, hey. If that's my biggest problem, I'm crazy lucky.

No comments:

Post a Comment