Friday, January 8, 2016

Scan Week

Yesterday was Scan Day, today is Results Day, and while I'm waiting for my docs to confer and hand me down the final word on what awaits me, treatment-wise, next week, I thought I may as well throw out some Show & Tell pics from the week.

Usually, we stay at The Rotary House  (MDA's on site hotel), but my appt dates got changed two weeks out, and they are, very much, at a full to capacity status. Sooooo... I did a little digging  (that's a lie, an email came right into my inbox on the very day that I realized we'd need a different hotel) and found that we could stay at the Wyndham for about $10 less a night than our other "cheap" Houston hotel. Done! And while these digs aren't quite as upscale as their website would have us believe them to be, the beds are awesome and the pillows are fabulous  (so much so that Judy was stripping the pillows so she could get to the tags to find out what these pillows are made of, and if/where she could buy some... I kid you not)

The view from the 12th floor is nothing short of amazing. We're in the heart of the medical plaza, so there are hospitals as far as the eye can see.

And it's even better at sunset (don't mind my reflection in the window that I was trying to take a pic out of).

This is the view to the left of our room. Hospitals and hotels, ad nauseum.

This is the view to the right of our room. Total (very upscale) residential neighborhood.

Houston is so funny. There are no zoning laws here, so you'll see houses in the middle of industrial parks and gas stations smack between million dollar homes. It's kind of crazy, but I'm getting used to it.

This morning, we met with Dr. Z, and she gave us the results of yesterday's PET/CT. It wasn't what we were hoping for, kids.

Which is to say, it's grown. Not by a whole lot  (approx 1/2 a cm in one place and almost 2 cm in another), but it's grown. And it's  gone up one point on the SUV scale.

Here's a b&w from the CT pics, showing the changes in the amorphous mass in/around my small and large intestines. (11/9/15 on top, 1/8/16 on bottom)

And here's a full color (PET) pic showing that the spot on my rib has gotten just a little bit bigger and angrier. (11/9/15 on top, 1/8/16 on bottom)

There's also a small hot spot under my bowels. It was hot there in November too  (this Nov slide doesn't show it, but there was a teardrop shaped spot on that scan). Could be another tumor, could be that mass moving from well-diff to de-diff, could be that I needed to poop. Your guess is as good as mine (or any qualified medical professional).

Sooooo... not what any one was hoping for. It's minimal growth, but it's enough that it counts. (The biggest change registers at just over 25%, so it's enough that it's classified as growth. Had it been 20% or under, it would have just been a blip on the radar. Ugh.)

Treatment options:

Stay with what I've been doing for two more rounds (there's an outside chance, but still a possibility, that the growth happened in the two weeks between the November scan and starting chemo). I've tolerated this regimen fairly well, and two more rounds would either show that it IS working (after getting a late start in Nov), or it would concretely show that these meds don't work with my body.

Try the new drug that the FDA just approved at the end of October. (I don't have the name of it at the tip of my tongue. If it really matters to you, ask Google. Either way, if we go this route, I'll know the name by the time I write another post.) Possible hitches are that the drug isn't available everywhere yet. Dr. Z put a call in to Dr. H while I was in her office. He wasn't available, so she left a message for him and assured me that after they had talked, she'd call me back.

If Banner can't get the drug in Az, I could fly to Texas every three weeks to get it. ... Or we'd go back to option one to see if maybe it'll stop progression of we give it more time.

Obviously, neither of these are awesome options. But they both beat the hell out of my third option, which is to go back on a version of doxyrubicin/andromancin (the red devil). That drug, and its wicked side effects, are, hands down, the hardest thing I've ever done in my life (and, people, there have been A LOT of hard things). If it comes down to that being all I have left, I'll do it. But I just can't willingly sign my body up for more of the drug that was so brutal that it almost killed my spirit.

Right now, I'm... eating a lot of chololate.

And it may be the most expensive part of this "vacation". Seriously, $2 a pkg for peanut M&M's is highway robbery, but since this is my drug of choice when my life goes sideways, and hard, I don't even care about the price of hotel snacks right now.

But really, I'm holding steady, just waiting for my doctors to talk it over and determine which is the best course of action for now. I'm okay with either option 1 or 2, truly. This current regimen either didn't work because it doesn't work, or it's not showing that it worked because of the timing. Doing another two rounds will tell the tale. I'd love to try option 2. It's the first chemo to get FDA approval, specific to liposarcoma. (Granted, it's technically specific to mixoid liposarcoma, but they've seen some success with de-diff liposarcoma, so I'll chance it.)

As soon as I know which way the wind is blowing, I'll post again.

As always, many thanks (and so much love) to those of you who keep me and my tumor troubles in your hearts and prayers. I can't tell you what it means to me, to have so many people aware of what is happening in my guts. I love you so much, and I am so grateful. Thanks for saying prayers that,  I am certain, have lengthened me life. And thanks for making sure I always know there's a reason to keep living. Ya'll are the very best!