It was scheduled to be a 4-hour surgery, and toward the end of that Dad got a visit from Dr. Weinberg. He let him know that the surgery went well, with no side effects. He also told him that at first all they were finding was necrosis. Unfortunately they ended up also finding cancer. This is just the high-level report, and we won’t have the full word until later this week. So we don’t know what grade the tumor is. But it wasn’t the news I was hoping for. Obviously Friday’s coversation will be big and include treatment plans.

For now, I’m watching junk TV and about to fall asleep. I’m also writing this on my iPhone which is a bit much. I should be out of the hospital around noon tomorrow/Thursday.

I’ll update you again once I have additional info tomorrow!

Love y’all.

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. :)

I just returned from my 3-month visit to Houston. I was scheduled for the standard blood work, MRI and visits with my two main doctors (Wolff and Slopis), along with some additional meetings for Li Fraumeni syndrome. The tests were all scheduled for Thursday, so I flew down on Wednesday afternoon to a ridiculously humid Houston. Thursday was like clockwork. I started with blood work at 7:00am, followed by my MRI. I left the center by mid-afternoon. That night I got to meet up with Mark, another survivor who Jill and I met on the M.D. Anderson ski trips. As you can see, he shares my enjoyment of Amy’s Ice Cream.

Given the results of the last tests (MRI & PET CT in June) I wasn’t all that nervous about the results of this round. I went in Friday morning for my 9:30 appointment with Dr. Wolff and found myself waiting for an unusually long time. It felt a bit like the old days at Mayo Clinic waiting for hours and hours to see the team. When Dr. Wolff finally came in he went straight to business and I immediately had the feeling something wasn’t right.

He pulled up my MRI and before he said a word I noticed a very bright spot on one of the layers of the scan. He quickly looked through some of the different views (front to back, top to bottom) and each time he reached the area where I had radiation I would see a couple spots. He still hadn’t said anything.

He started pointing these spots out, and after looking through the scans he went to read the radiologist’s briefing. He read it out loud, translating some of the medical speak as he moved through it. The short of it was that there are two spots, very close to the removed tumor, and both in the area that was radiated. The radiologist had noted that these spots seem like they might be a reaction to the radiation, and not necessarily a tumor. Doctor Wolff felt, however, that these types of side effects happen within the first several months after completion of radiation, and I am now over 2 1/2 years out.

I listened as though it was someone else he was describing… not yet reacting to what was being shown.

We compared this MRI to the one taken in June. One of the spots had been marked by the radiologist at that time as something of no concern. You could barely see it. In the new scan it should up very vividly, was much larger, and accompanied by an entirely new spot.

We also discussed recent seizures I have been having. They’ve been much more intense in the last month or two, and he explained that this would also serve as a sign of growth in that specific area of my brian.

I suddenly started to react and felt my throat tightening as Dr. Wolff started explaining some of the treatment options. He was mentioning chemo drugs, and new studies that are only available at M.D. Anderson, and the possibility of a biopsy. It all went in one ear and out the other and I just focused on not crying. When he finally asked what I would like to do next, all I could do was grab the phone out of my pocket, show it to hime and say “I need a call”. I immediately started crying and went off to call Dad to explain the development. Mom arrived home shortly after and we were all in disbelief.

Before we could move any further we needed that confirmation, and the quickest way to get it was through additional tests. I went back to Dr. Wolff’s office to get an order for a PET CT, as he was hoping to get another type of view and an opportunity to confirm these spots as tumor. I immediately went over to another building and began the long wait for the PET CT. I literally had just eaten a bag of peanuts I had in my bag from my flight the other day (15 peanuts total, maybe?). Dr. Slopis had asked if I had lunch yet and threw some crackers my way. When I reached the PET CT center I found out that you can’t have ANYTHING for 6 hours before the test. So I waited, and waited, and waited until I finally was called for the scan… literally the last person in that area of the building by the time the scan was completed around 7:00pm.

Dr. Wolff’s nurse told me to meet up with Dr. Wolff in the hospital as soon as possible after the scan. He waited on a Friday night until 7:00 to give me his quick read on the PET CT. Wow!

The scan didn’t confirm anything. It was a bit of good news, but certainly no guarantee. It only told us that the PET didn’t read what the MRI was showing. Without the confirmation, it left us with only one other option… a biopsy.

When I finally left the hospital, I couldn’t do anything but go get Mission & Amy’s. As some of you know, it’s my top pick in Houston for stress reduction. And it seemed to work a bit.

So here’s where the visit left me:  still unsure of whether these are tumors or just a side effect of radiation, and because of that, unsure of next steps in treatment. Whether its a tumor or not, I will be going through some level of treatment since it seems to be increasing my seizure levels and is growing in an area of my brain where we certainly don’t want it.

I’ll be working on Monday to figure out timing with Dr. Wolff and Dr. Weinberg (my brain surgeon) on when we can do a biopsy. I’ll be setting up flights accordingly and will be sure to keep you up to speed on when that happens.

In the meantime, think good thoughts. I hope you’re all doing well.

Casey