Thursday, February 9, 2012

This Side of Up

I'm not even sure what that title means. Just sounded fitting. I've been informed once again, several times in fact, that I am not keeping this blog up to date. I am blogging twice weekly on my author's blog (if you aren't following there what's up with that?) Granted I don't usually blog about personal stuff over there. Just my book and young adult fiction in general. But I'd still love to have you. Numbers become important when you're going all commercial with your blog. ( (Just in case I haven't pounded it in enough times.)

Okay, enough business. I know you all want the personal stuff. I've reached the point in this cancer gig that my typical interaction with friends goes like this:

"So how are you?"
Then they usually touch me, or put an arm around me, or look me in the eyes, and say, "How are you really?"
The next answer depends on my mood. Usually I firmly answer that I'm fine. Sometimes I look away when I say I'm fine so they don't see the stubborn tear that I can't seem to stop from forming. Occasionally I'll actually tell them about the frustration with my surgeries or even the goiter on my thyroid.

So there it is out there - my multiple surgeries have not been working and there's a goiter on my thyroid. I've been passed from doc to doc about the goiter. They have ruled out thyroid cancer, but they can't rule out metastasized cancer without removing the entire thyroid. So far the docs aren't recommending that, since it is a VERY LOW risk, and they believe the dangers of not having a thyroid while fighting cancer are higher than the risk of it being cancerous. I get another opinion tomorrow. And just to be safe I'm scheduled for yet another opinion next month.

The upside is that I qualify for a hyperbaric chamber treatment which will help my radiated tissues heal. The downside is that the treatment involves 2 hour sessions at the hospital, five days a week for 8 weeks. Just like radiation except its making tissue grow instead of killing it. I'm a little daunted by the schedule, but excited by the prospect of having things heal.

On the surgeries. Reconstruction is not working because of that ultra-stubborn radiated tissue. After two surgeries I'm not willing to do any more until we get that worked out. Hopefully the hyperbaric treatment will do the trick.

I do have a story about the other surgery. As you may recall I had a fancy-schmancy surgery done to help drain lymphatic fluid from my arm so it doesn't swell up like a balloon all the time. Well, it was a pain. I had to literally hold my arm in the air for about two weeks afterwards. But it worked. The swelling went down and it felt awesome. Then three weeks out I fell. Caught myself with my hands. Yeah, stupid, I know.

The really crazy part is that I was in a Pep Boys at the time. I haven't wanted to hire an attorney, but the arm swelled right back up and won't go down. When I called my medical insurance company to figure out which bills will be paid by them and which they'll expect Pep Boy's insurance to pay, they suggested I hire an attorney since it's a little on the complicated side.

So I called the one they recommended. I went through the details of what happened. The attorney asked what kind of medical bills I had. I told him that most of what I've had to do has been self care. I still have to wear a compression sleeve 24/7 and do manual lymphatic drainage every day. Plus I still have a crazy swollen arm that was once fixed. But in terms of expenses I went to the ER immediately afterwards, then I've been seeing my lymphedema therapist and I've seen my surgeon. Finally I commented that the surgeon wants me to try some other therapies, like massage, before we talk about another surgery.

Then he got excited.

Attorney: "You might need another surgery? How much did the other one cost?"
Me: "I don't know. A lot. The surgeon is very specialized."
Attorney: (enthusiastically) "This case would really be worthwhile if you could have that surgery."
Me: Yeah. That would be pretty awesome.
Attorney: (obliviously) The case probably wouldn't be worth my time without that surgery, but if you'd like to come into my office we could talk about it.
Me: You betcha. I'll be right there.

Ah, dreamers. Gotta love em.

So that's where I am. Still fiddling with the awkward hair, still dealing with the balloon arm, still fighting side-effects of medications and a sickly thyroid, still worried about the future, but mostly happy to be hanging out on this planet with all the other crazy whack-os.

And now you know.


Integrator said...

for the thyroid, I would ask about Afirma molecular testing to be done on the specimen collected during the biopsy (the lab should keep your “slides” for couple years).
Other option is to have a PET scan; if tumor or nodule lights up it has 40% chance of malignancy and must be removed!
The video below shows the cancerous cyst growing on the thyroid; it had been ignored for long time despite obvious manifestation
Good luck.

Good luck.

Kimi said...

Yeah, needless to say I did NOT watch the video mentioned above. *Shiver*

Good grief, girl! I turn my back for 2 seconds and all heck breaks loose!

(Translation: Good grief, girl! I turn my back for 2 seconds and, as usual, all heck continues to break loose, but I just didn't hear about it because I turned my back for 2 seconds!)

Thanks for the update. Praying for you. *Sigh*