Monday, October 1, 2012

It's October 2012!!!! Or Welcome to Normal!!! Or No - That Cough Does NOT Mean You're Going to Die!

I've been waiting for this day for THREE WHOLE YEARS! What's special about it? It's October! October 2012 to be precise. Which is three years from that ick, awful diagnosis. And the time that I get to turn off the paranoia.

In a nutshell, my odds of the cancer returning (at which point it would be "largely untreatable") (I repeated that when the doc said it, and he said, "You caught that huh?") I think they hope things will just slip past you. And mostly they do. But I'm digressing. I do that. Anyway, those horrible don't-think-about-it odds were 80%.


I haven't talked about that number. Didn't want to dwell on it. Didn't want my loved ones to know. But it was always there. In my brain.


The last time I saw my oncologist he said it was now safe to tell me that when they opened me up and saw the extent of the cancer they said, "Oh crap" and then called an emergency meeting to see if they couldn't figure out a way to give me some hope of survival. I'm glad he didn't tell me that sooner. He also said that every time he comes to see me he flips through my chart and forms an image of what I should look like when he comes in the door, and he's always surprised with what I see. And with the fact that I don't have any symptoms of recurrence.

Of course, those cute little munchkins in the picture weren't even born three years ago. So there was no way I was going anywhere!

I know that the last time I blogged I was having a scare, but it turned out okay. And from here on out that's how it's going to be. My chances of cancer returning are NOW more like 20%, which I think are pretty much anybody's odds of getting cancer. Sorry if that worries you. To me it sounds great.

So here's the best part. When I cough? It's just a cough. When my back hurts? It's just sore muscles. A pain in my thigh? A pain in my thigh. I think you get the idea. You have no idea what a relief that is.

And now I can plan my 50th and even 80th birthday with no worries.

That's in December by the way. The 50th. And no, I'm not sad or embarrassed or anything. I'm turning 50!!! Woop! Woop! Woop!

So to celebrate this big October thing, my lovely girls formed a team to march in the "Making Strides Against Breast Cancer" run coming up in a couple weeks. I'd love to have you join me in my victory lap, or just support a good cause.

Birthdays, family, and friends. That's what it's all about.

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.