Sunday, March 15, 2009


I'm starting my new position at work tomorrow. It's funny, I have no expectations of it at this point. I'm not too worried about it either, I think it'll be managable which is good. The only thing I'm worried about right now as far as work goes is having to present out my project again next week (Thursday) with some additional pieces that I haven't completed yet. Oh, and the fact that I'm going to be gone a whole lot over the next couple of months. That stresses me out, unfortunately. But also really excited for some of the great things I've got coming up that will be pulling me away from the ol' office. First, we're going to Napa this weekend for a family vacation, Ben in tow! Very excited, should be perfection in my book. We're staying at a vineyard/bed and breakfast! Then I'm going out to L.A. to see the Cushing's specialist April 1st! As much as that's gonna suck, I'll be glad to hear what he has to say. Then it's off to Disneyland for my 26th birthday with my amazing boyfriend in the middle of April. And then in the middle of May we'll head back up to Napa for a wedding at a vineyard :) Good times all around!

Now for the bummer messages. I have an appointment with the GYN at Mayo Clinic tomorrow morning. I'm NOT looking forward to this in the slightest. I can guarantee it will be a frustrating appointment, because I'm not pleased with how I've been feeling, and I have no idea what's causing it. A substantial amount of this discomfort could very easily be blamed on endometriosis. But what could we possibly do about it? I had surgery to try and remove some of the pain, and it made things worse! I went on Lupron to try and remove some of it, and I was a crazy person (and it didn't work as well as I would have liked). I went gluten-free for this damn disease, and nothing. Now I'm on birth control for it and I'm still not feeling lovely. It seems to me that options have been exhausted. At this point, it's a learn to deal or go insane situation. razzle.dazzle.

Second bit of bummer news. I haven't heard from the internal medicine doctor about setting up any follow-up appointments, lab work, or forward movement whatsoever. I did get a voice message from their little voice system telling me that the urine analysis came back perfectly normal. Shocker. So that pain I've been having with urination- eh, no biggie. The tests are normal, I should be good to go. So, square one- it's good to see you again.

And now a little neutral style news: I met with the endocrinologist, Dr. Lalani, who originally diagnosed me with Cushing's and said I needed the tumor to be removed. I asked him why he diagnosed me and what it means that the neurosurgeon I saw said he didn't feel comfortable with THAT particular diagnosis and needed a different doctor to diagnose me (who, if you haven't been following, did not in fact diagnose me...but rather told me there's nothing "endocrine related" wrong with me and that I need to see and internal medicine doctor...who told me I need to see a GYN and a GI doctor...anyone picking up the pattern here?). Dr. Lalani did some interesting word play and underhanded back pedaling, but somehow made me feel a little bit better about my present stagnant situation. He said that because he's such a proactive doctor, he saw some possibilities of Cushing's and decided we should stick with that because Cushing's goes undiagnosed so often. I was impressed. He then said that I've disproved Cushing's a couple of times now, but have also proved it. So we need to continue to test to figure out which hypothesis to stick with. He put it that it's not cyclical Cushing's that I might have, but rather it's Cushing's with cyclical production at this time. He said all Cushing's starts out like this, with cyclical nature. We found mine early, possibly. We will continue to test until it inevitably progresses toward florid (or constant producing) Cushing's. He said that's how it works. And so Dr. Lalani wants to re-test with a 24 hour urine once every 6 months. Doesn't seem very cyclical testing to me. And that's a looooong time to go between tests if my symptoms aren't getting any better. And he said he's also looking for growth of the tumor, so we'll do another MRI every 6 months as well. But I've heard these tumors don't necessarily have to be growing to be totally evil. I like this doctor a lot, but I'm skeptical. Once every 6 months? That's rough. If it's really like he says it is, with progress sure to come, then I guess that's fine. But if it's cyclical and will be this way for a while...I still want it to go away!!! Why not just take the tumor out! I guess the answer to that is that they don't want to go in for brain surgery if I don't need it. Valid concern, I agree. But tough to take at the same time.

So I'm glad to be going to see Dr.Friedman. Expensive though, I'll tell you what! I have to get another MRI or two while I'm out there because my previous one was on a lower resolution machine than he needs it. And it's all out of network. And I have to pay cash for the actual visit with the doc. Ouch. If any cushie's are out there reading this (who used Dr.F, what's that visit like? Should Ben come along and use some of our valuable PTO days? Or will it be fine if I go alone? Is there any time for anything else other than the testing?

1 comment:

Amanda said...

It all sounds terribly frustrating and stressful *hug* I do hope that the trip to L.A. leaves you with some more concrete answers and something you can actually do to make you feel better.

As for a Disneyland birthday - whoo!! Is your birthday on 26th April then? It must be around then, right? My birthday is 28th though I'm a year younger than you but it's pretty cool we're so close in dates!