I have an update on the current plan for treatment that I wanted to share with you all. I received a call from Dr. Weinberg, my surgeon at M.D. Anderson who removed my original brain tumor. He was on vacation last week, so we weren’t able to connect with him when I was in Houston. He connected with Dr. Wolff & Dr. Slopis this week to discuss the current state of my scans, and had the following to share…

In regards to the PET CT, he updated me that the final read from the radiologist noted that one of the two spots did actually show up, but very slightly. He reminded me that generally speaking, if this were a tumor, especially a high-grade tumor, these spots should show up more than they currently do. He said that because the intensity is less than expected, it could be more in line with necrosis rather than cancer.

In regards to the biopsy, he does NOT recommend a biopsy in the next week or so. After reviewing the MRI and the position and size of the two spots, the team feels it might be too risky to perform a biopsy yet. The tumors are already located in a sensitive area of my brain (remember, it was not removed during my original surgery because I would likely have had some combination of paralysis, memory loss, etc.), but these two spots are also very close to critical blood vessels and nerves. Targeting them with a needle biopsy runs major risks. If the nerves or vessels were hit while trying to perform the biopsy, I would run similar risks of stroke or paralysis of the right side of my body. So while the biopsy serves to make our next decisions for treatment, having such a small target and serious risks makes him suggest we wait several weeks to see how the tumor changes.

Because of this, I will not go back next week. Instead, we’ll be working on appointments for about five weeks from now. At that time we may see growth in the tumor, but Dr. Weinberg says this would actually be a good thing in this case, as it would give him more working room for a less-risky biopsy if they decide to perform one. Further, if that decision is made, they’ll be able to perform one while I’m down there that week so I don’t have to fly down yet again.

Finally, it’s rather easy to keep thinking of this thing as a tumor, so I asked him what the hell this “necrosis” thing really is. His response: “Casey, I’m going to give you Dr. Weinberg’s Philosophy on Necrosis.”

He described how post-radiation brain tissue can die, causing inflammation of that area. The inflammation then irritates more area and can cause death of additional tissue, which in turn causes more inflammation, more irritation, tissue death, etc., etc., slowly growing as this happens. In a lot of ways it’s similar to a tumor, which is probably the best explanation of why it’s so similar on my MRI. Obviously, I’m a believer in his philosophy.

In short, things are on hold for a few weeks while we wait for these spots to grow or change. I’ll be heading down to Houston in 5 weeks, and based on those scans we’ll decide if a biopsy is safe. If so, I’ll have it that week. If not, we’ll revise plans accordingly. Obviously it’s a bit strange to me, sitting around for these things to grow. But it also makes sense and is far less risky, so that’s what I’ll do.

Thanks to all of you for your amazing support. I’ve been absolutely blown away by the comments, encouragement, prayers, and well-wishes. One thing is certain… I’ve been through this before and it’s things like those that keep me strong and will continue to do just the same. Thank you.

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

I returned from Houston last night after a two-day trip for essentially one appointment at M.D. Anderson. As you may remember from my last visit, they recommended a PET CT scan for a better look at the area of concern in my brain. After speaking to the team in Minneapolis who doesn’t do these types of scans, I decided to fly back down for the test. And I’m so glad I did.

As a little bit of background, the PET CT started with an injection of a radioactive material, followed by resting for about an hour in a protected cube while that material spread through my body/brain. I was then brought to the scan which looked a lot like a CT (with the large whirling machine spinning around me) combined with an MRI (a long tube that I passed through). However, I learned that unlike a regular CT or MRI which measures actual mass and size of the tumor, a PET CT measures glucose levels in the tumor. Dr. Wolff explained that a growing tumor would have very high glucose levels, and that any area of my brain with such levels would show up bright on the scan.

My scan started around 9:00am and including the resting time, I was done around noon. When I first arrived for my 1:00 visit, the scan had just started to be posted to the system that Dr. Wolff accesses, so the film he pulled up didn’t show much of anything. In looking at the “results” I remember thinking “I flew all the way down here for this???” So we decided I should come back in a few hours once he had access to the full results and reading from the radiologist. So I went back to the hotel and took a nap.

When I returned it wasn’t more than a few minutes before Dr. Wolff arrived with a grin on his face, and I knew what that meant. He brought up the results on the computer and I could immediately see the good news too. There was nothing seemingly close to bright in the areas surrounding my tumor. Of course, my mind was filled with questions.

“Does this mean it’s slow growing?”

“Does this mean it’s small?”

“Does this…”

Dr. Wolff was very quick to interrupt. “Just enjoy that bit of news,” he told me. So we paused for a bit before I forced myself to ask the questions. :)

As it turns out, the news IS largely good. There are no signs of fast growth of a tumor in my brain. But these results conflict with those from earlier this spring with the MRI, so it will mean continued closely-watched results from future scans. I’ll be back in Houston in August/September for my next visit and we’ll go forward from there.

I left the appointment, following Dr. Wolff talking to another doctor about how rare it is that he gets to give good news.

After the appointment, I went back to my hotel and made a few calls to share the great news. And when those were done I just had to get out of that room and clear my mind. It’s the hardest thing to explain, but after weeks of prepping myself for the worst, it was hard to accept/understand the good news. After a couple hours of “Up” in 3D (I recommend you see it), my head was a lot clearer and I went to celebrate with Mission Burrito and Amy’s Ice Cream. It seems to bring me good luck. :)

The picture above is from the previous weekend when I visited with some friends in Chicago. These are the friends that have been with me since the first days of this cancer mess, back in high school. It was great to see them.

Hope you’re all well!