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