Casey and Dad before 11/04/09 biopsy.

Dad and I made it to Houston safely yesterday and spent the day in appointments to prepare for tomorrow’s surgery/biopsy. I met first thing with Dr. Weinberg. The first step was to get a new set of lifesavers on my head (see above). It was a bit of deja vu having them added again. And I’m wishing I had them on for Halloween as it seems like everyone loves to sit and stare! Anyway, we reviewed the risks of surgery, and I got more information on how they would approach the tumor from the top of my head to ensure the safest route possible. It sounds like there will be about 1 1/2 inches of incision. Once they open that they will remove a portion of my skull (a small hole) to allow room for the needle.  The needle will be tunneled through to carefully avoid an artery on the outside of tumor, and an area that controls critical muscle function on the inside. Obviously it’s not without risks, but Dr. Weinberg is saying there’s only about a 5% risk of severe side effects. We finished the appointment with me signing off on those risks and moving on to anesthesia prep. I’ve been put to sleep so many times for surgery that it seems I’m a bit of an expert. After that we had a bit of time to go grab lunch and hang out at the pool.

It’s now 7:00pm the night before the surgery and I’m back at M.D. Anderson for my last appointment… an MRI of my brain with the lifesavers on my head. This MRI will be part of the map they’ll use for the surgery itself. The building is almost empty right now, but we’re still having tests… 8:00am to 8:30pm. And tomorrow starts EARLY. I’m scheduled for surgery at 5:15am!!

According to Dr. Weinberg, I will be staying at 23-hour watch, so I’ll be in the hospital until Thursday (they don’t know if it will be ICU or regular room until after surgery). Assuming I’m not having any side effects from the surgery, I’ll be able to get out on Thursday, and then we’ll be returning for appointments on Friday to discuss results.

SOooo — a busy night and an early morning. I’ll keep you posted after surgery if/when I can, and will let you know the results once I hear them!

Mission burrito wishes and Amy’s ice cream dreams. Love, Casey

Just wanted to post a quick update to let you all know that I finally have plans set for my visit to Houston. Dad will be joining me this time. We’ll be heading down on Sunday the 18th, with appointments starting on Monday the 19th. I’ll be starting with standard blood work and moving on to an MRI. Following that MRI, I’ll be having a different form of magnetic resonance testing known as MR Spectroscopy.

Huh?

I looked it up and read that it is “used to detect the concentration of specific metabolites in a particular region of a tumor”.

Huh?

For now I’ll take it as another way of collecting information on the tumors. I’ll let you know when I understand it in full.

Tuesday is the crazy day. I start with PET CT prep at 7:00am and will be there for three hours. From there I go straight to Dr. Slopis to discuss my seizures. Dr. Wolff will join us to discuss the situation as a whole, with results from the MRI, MRS, and PET CT obviously being the focus. We’re hoping that this delivers good news, or at the very least a better understanding of what’s going on. And finally, we’ll meet with Dr. Weinberg (my original surgeon) to discuss if I’ll need a biopsy. If that biopsy happens, it will be on Thursday and I’ll be home on Friday. If not, I’ll return home on Wednesday.

Since there are so many questions that are up in the air (is it cancer? if so, what treatments? if not, what treatments), there will be a lot of important conversations taking place to move things forward.

I’ll be sure to pass along that information once I’ve got the results. Thanks to all of you for such amazing support. My family and I are continually wowed by how many kind words of support we see.

Take care, and talk to you soon. For now, I’m off to see Jill, Ben & Ruby. I’m going to be an uncle in a few months and need to bring out my first bunch of gifts. :)

Last week I had another one of those MRIs that snuck up on me with my doctor in Minneapolis. I’ve been so busy with work that I haven’t spent much time really even thinking about anything else. So when I got the call the night before to pre-register for the appointments it took me slightly by surprise.

It was just the standard MRI/doctor checkup that I’ve been having every 2 or 3 months since radiation. And I was assuming it would go just like the rest of them — ending with good news. This one didn’t quite go that way.

A month or so before the appointment I had spoken with the team in Minneapolis about the October/January appointments in Houston, letting them know that in October the team at M.D. Anderson thought there might be some hot spots on the scan but that January didn’t show anything. And I requested that those scans be sent from Houston to Minneapolis for comparison during this appointment.

I went in for my scan and then headed to the doctor’s office later in the afternoon. Generally, Dr. Truscheim opens the door and immediately says something like “everything’s great” or “it looks fine”. But this time he greeted me while heading to the computer to pull up the MRI and immediately started talking about the scan of the tumor — that is, the part of the original tumor that couldn’t be removed and was instead radiated. He pulled up that day’s scan, along with scans from last June, and started pointing to certain areas where he and the radiologist are “without much room for doubt” seeing an increase in the size of the remaining tumor. And as we went through different layers of the MRI, there were spots were I could see growth as well.

While walking me through these he was very quick to note how “very, very slow” the growth was and that for now we should just continue monitoring. I was trying to listen, but couldn’t help but think of the “what’s next?”

We discussed my P53 genetic disorder and how that limits the safety and effectiveness of certain treatments, and how jumping into chemotherapy or radiation run way too much risk at this point. After I asked him about surgery to remove it, he reminded me of the reason that area had to be left behind in the first place – “you wouldn’t come back the same you”. Without question, he is recommending we should continue to monitor with upcoming MRIs, and several times pressed the “very slow” message. It’s so damn easy to say, but wasn’t very easy to hear.

I called my dad and gave him the news, and of course broke down because it was all too familiar. But dad is always great at comforting at just the right moment. He reminded me that we still have no idea how long the original tumor was there in the first place… that it may have been since I was a little kid. And as far as the remaining tumor grows, “we’ll just have to pray that it grows so slowly that you outlive it.”

I think Dad is spot on.

I’m heading back to Houston in May with Mom for a full set of tests, obviously including another MRI. The scans from last week have been passed to the team there so we’ll be comparing lots and lots (and lots) of MRIs and I’ll update you accordingly. For now, hope you’re all doing well.

Love you.

P.S. Today is Jill & Ben’s one-year anniversary! Hence the photo from last year. I’m heading out to spend a week with them on Wednesday. Can’t wait!