Wednesday, May 02, 2012

Wheels are beginning to turn...

After my last appointment, I went ahead and started the process to get all my records sent to MD Anderson. During that time, though, I started having some pretty substantial swelling of my left parotid gland (for those of you who may not know, you have two parotid glands, one on either side of your face, just over your temporomandibular joint, just in front of your ears. It's a salivary gland, the biggest that you have.). So, I called my doctor, left her messages. When she called me back, she got all the info as to what was going on, then called and talked to an ENT she knows. Called me again, told me all about him, and that they had discussed my case, and that while the parotid issue was probably caused by the radiation (another side effect. yay.), neither of them had an explanation for my swallowing problem, and he would like to see me. Catch is, he is in Baton Rouge, would I be willing to drive there? What the heck, right? Perfect excuse to explore a little more of my new state, I say!

So I jumped through all the hoops to get that set up. At the same time, she had referred me to MD Anderson in Houston for further investigation/second opinion on the persistence of the cancer in my thyroid bed. While my bloodwork is not showing bad at the moment, the fact that there is some elevation (when, at this point, there should be none at all) and there was so much uptake still at one month post dose, she agrees that we may want to be more aggressive, especially given my history. So, she took it upon herself, since I was still waiting on paperwork from her office, to make more calls, print more things out and mail things to me herself. She really is a great doctor. She calls me to check in, she tells me to try not to worry too much, knowing that there's no way I won't worry at all, and she respects that I do my own research and that I keep up with all my own information.

So anyway, records were requested for MDA. That was on April 20th. Today I called to make sure that someone was taking care of that, and found out that the paperwork had been mailed to MDA on April 24th. So yay, less time that I have to wait!  Once they get the paperwork, the doctor will review my case personally, decide what he wants to do initially, the intake group will contact the insurance for any pre-authorizations needed, then they will call me and tell me when my appointment will be. I'm not sure what to expect, but based on the conversations I've already had with people there, I'm sure they'll tell me! Now I just wait. I'm thinking that I should be hearing from them at the end of this week or the beginning of next week.

There's a part of me that's really excited, in a macabre sort of way, I guess, about this. There's something about the fact that I'm going to talk to someone who really, really knows how to deal with my cancer. Someone for whom this is daily. Someone who helped write the guidelines for treating this type of cancer. Someone who can really tell me, more definitively, what the different scenarios are, and what my history means for my future. Until this point, it's all just been educated guesses.

There's that other part of me, though, that's terrified. Terrified because I even have a reason to be making this trip. Cancer sucks, ya'll. It's one of those things that, truly, the treatment often is what makes you sick, not the cancer itself. For me, had they not found it when they did, I would be blissfully unaware. I would be slowly dying, but I wouldn't know it. Part of me is terrified that he's going to tell me that there's nothing we can do right now, that we have to continue to wait. And another part of me is terrified that he's going to be gung-ho and ready to operate right away.

The worst part of all this, though, is the mind games. I say cute things, like, "There's an Ikea in Houston! Yay!" and "I have friends in Houston! I'm just going to make this a fun trip, and the MDA stuff will just be an aside!" I say those things to everyone. I say them to try to convince myself that I'm not as scared as I am, and I say them because, if we're really honest, no one wants to deal with someone else's fear. So there are nights when I sleep like a baby, and then there are nights where it takes me forever to fall asleep because I'm panicking over things way beyond my control. Nights where the dreams are pleasant, and nights where the nightmares leave me crying out in my sleep.

Some days, I kind of wish I were a big drinker or a drug addict of some sort. Then, at least, I would have something to quiet those voices in my head, the ones of niggling doubt and fear. I'm not, though, so I write. And I play with yarn. And, occasionally, I explode and torture my poor, sweet, loving, understanding husband....

4 comments:

Anna-Leigh said...

That is some heavy stuff, Kerry. My prayers and good juju go out to you and the doctors you have working with you. It seems like you have a great team trying to help you out. You're lucky to have that sense of humor to get you through the ick...and an understanding husband is helpful too ;-)

Kerry said...

Thanks, Anna-Leigh! Awesome friends that take the time to read this drivel help tremendously, too, let me tell you!

Paul said...

Heavy stuff, indeed! I try and keep up with your writings, especially the tales of living in LA since I don't forsee myself making a journey there anytime soon. Anyhow, my prayers and thoughts are with you, hoping you get favorable results from your upcoming tests and consults.

Kerry said...

Thanks, Paul.... And who knows, maybe you'll make it here sooner than you think. If you do, we'll have a drink together, I promise!