Just got back tonight from another visit to Houston. I flew down on Wednesday night on what has become the same set of flights as almost all of my visits to M.D. Anderson. Upon arrival I was given a gigantic, white police car (i.e. crown victoria) to drive around instead of the tiny economy I usually order if I rent a car. And thanks to the Houston Rodeo I had to stay in a hotel much farther away, in an area of the city I had never been to.

Traffic was a nightmare thanks to the rodeo, shut-down lanes of freeways, a flipped-over semi, the standard traffic of Houston, etc., etc. Instead of the usual 5 minute ride from the hotel to M.D. Anderson, it took about an hour each morning. Yuck.

On top of these stresses of Houston, I was also on Round 5 of my chemo cycle. Managing the travel, making sure I was taking chemo and appropriate prep and follow-up pills, along with the usual seizure pills seemed a bit of a challenge this time. Most people who are going through or have gone through chemo treatment will mention memory issues as a top side-effect. It’s called chemo brain, and lately I’ve been noticing it a lot more. I have more frequent issues with memory and definitely have a lot more days where I’m just exhausted. My head is just a bit cloudy.

Luckily the appointments and the results they provided were much clearer. On Thursday I went through an EEG, blood work and an MRI, and met with Dr. Slopis and Wolff on Friday. My blood results are great, even though I’m going through treatment. All critical counts were in their average ranges. And my MRI came back with much the same results as the last visit. Comparing it farther back, it’s clear the tumor size is definitely smaller than the pre-chemo version (taken back in November). Very good news.

Getting back to the memory, energy, seizures, headaches and other symptoms — I spoke with Dr. Slopis about this again. Obviously a lot of it was expected, and some of it came about by very unexpected personal stresses this winter, but too much of it is coming from more controllable stresses. So I’ve got some things to work on (and NOT work on) to help alleviate some of those side effects.

Spending time with family seems to be a great help, which leads to the photo above… Aunt Kathy, Uncle Dave and my cousin Tony came up to visit a couple weeks ago. It was great to have them up for a fun weekend of food, shopping and site seeing.

Hope you’re all well. Love you!

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!

I’m back from Houston — returning home on Saturday with Mom after an incredibly packed visit. Every last minute of it seemed scheduled, with 16 appointments spread across only two days at the clinic. It barely left room for Amy’s ice cream.

Over the past few weeks I had been doing a pretty good job of not dwelling too much on the appointments. But as they approached I knew they were starting to wear on me, through increased stress and occasional reminders that came in the form of seizures or frustrations with memory.

We flew down on Wednesday afternoon and arrived just after rush hour. We picked up our car and drove to a painfully familiar hotel… the one I spent a week in after my brain surgery two years ago. A single hotel room with one bed that my whole family squeezed into for that whole time… the only room in the inn at the time thanks to the rodeo. It was so strange to arrive, I immediately was having deja vu. We kept thinking about Uncle Jim bringing me steak from Ruth’s Chris the night I got out of the hospital.

Luckily it was just for the first night. After that we stayed at the reliable SpringHill. Thanks again, Vicki, for all of your help.

Thursday started bright and early with blood work to measure my drug levels, chest x-ray, CT injection and scan to check my chest and lungs, cognitive testing, an ultrasound of my abdomen, and a visit with the team at the Cancer Prevention Center. The tests were all very familiar and expected, but kept us very busy the whole day. But it was nothing compared to Friday.

I was scheduled for my bone scan dosing and exam first thing in the morning, and was then to head in for a mole mapping. The process was tied to the prevention center and would map all of the moles on my body to monitor them annually for growth or change in color. Unfortunately, the bone scan ran long so we tried to reschedule for later. Instead, we ran for more blood work and checked in for my MRI thinking we’d go mole-mapping right after that. The MRI was scheduled for 20 minutes but quickly turned into 2 full hours, and by that time we were already late for my first neuro/neuro-oncology appointment. We went up to visit with Dr. Slopis and had a good discussion about the results of my cognitive tests. In that appointment I had voiced my frustrations with what seems to be a weakening ability to focus at times, most notably on the weekends where I spend a lot of time sleeping. To my surprise, he said the results of the cognitive test were outstanding, and went on to explain that a fair amount of rest to catch up from the week isn’t a bad thing. We talked about ways to relax (I’m going to start enjoying Watsu even more!), and also about options for increased focus. There are some drugs I could try, but for now I’d prefer to try without. Obviously those drugs would have side-effects that could be just as frustrating. In regards to the MRI in March, Dr. Slopis agrees that it might be showing signs of growth, but isn’t quite ready to agree completely. In comparing scans from Minneapolis and M.D. Anderson, it’s easy to see change in sizing, but Dr. Slopis was also able to point out how some of that change might not actually exist based on how the two separate machines show results in different ways.

Next up was Dr. Wolff, my neuro-oncologist. He had spent time with Dr. Slopis reviewing all the films and reports immediately before the two appointments. The appointment focused almost entirely on the tumor and his growing concern about it’s classification. He agreed that there were changes in size according to my recent MRIs, and was very open and blunt to say how serious it was assuming it were true. But he also felt that without knowing 100% what was going on, we couldn’t yet plan for next steps. That said, we discussed some scenarios of chemotherapy combinations, radiation, surgery, or test treatments that are taking place at M.D. Anderson (their area of expertise). In order to responsibly recommend that next step, he felt it was important to first get additional scans completed in order to help finalize those answers.

Unfortunately, it was already 4:00 on a Friday afternoon, and Mom and I were scheduled to return home the next day. Without any options for appointments, we agreed to get the work done in Minneapolis and have the radiologist in Houston examine as needed.

Over the next couple of days I’m planning to get a PET CT or brain perfusion scan which will help differentiate some of the healthy tissue from the tumor and give better support to the doctors to make recommendations on how to move forward.

On Saturday, Mom and I flew home. We spent the day preparing for a couple of great days with the family. As you can see from the photo, Jill flew in for Mother’s Day. And since I couldn’t possibly beat that as a gift, I decided to torture them both with a very long bike ride (it took us almost 3 hours with a few short stops along the way). Dad joined us later on Sunday and we spent the next two nights doing nothing but fine dining.

On Monday (yesterday) I spent a good amount of time trying to organize my next appointments. Unfortunately, it’s never easy to connect with the team here, and even harder to connect them with Houston so as of now, I still don’t have appointments set. But I’ll keep working on that and will let you know how things progress.

For now, I’m back to work and looking forward to Watsu on Monday night.

Thanks for the support everyone!

Hello everyone! Thought I’d update the site with some recent medical stuff to get you in the loop.

I had been doing pretty well lately, with only occasional seizures which were very minor, along with some migraines. In the last couple of weeks I started having an increased frequency of what are generally very quick flashes of a seizure. I can only describe them as a sneak preview rather than getting the real thing. But last Friday, out of nowhere, I had a full seizure much like I first experienced back in my days at Target before I even knew about the brain tumor. It lasted about 30 seconds, and came complete with the aura, metallic taste in the back of my throat, the numb finger tips, a bit of dizziness, and then of course the nervousness that quickly followed. It had been a long time since I last had one like this, and it was a creepy feeling to experience it again.

I called Dr. Slopis in Houston right away to let him and his nurse know what had happened, and to get their recommendation on what to do. They asked that I get an EEG as soon as possible so I called in to Abbott and they were actually able to get me in about an hour later, which was pretty miraculous since it was a Friday. The main reason to have the EEG so quickly was to study whether or not it was truly seizure activity that was causing the symptoms, or possibly some other issue like anxiety. It sounded all too familiar, and I knew from the very start that it was a seizure. But I was glad the doctor wanted to be thorough.

I talked to some people at work about what was going on and that I needed to leave, and then left for the EEG. It was very standard practice, nearly identical to the steps used in Houston. Lots of little nodes hooked up to my scalp, face, chest, etc., followed by random breathing, strobe light and calming activities. During all of this, a computer was recording, paying attention to the amount of brain activity that was occurring (and where it was occurring) while these activities took place.

Since it was a Friday, I didn’t get the official results until that following Monday. Indeed, it was a seizure. The official scaling of the seizure activity during the EEG was “mild to moderate” in severity. And word was passed to Houston. Dr. Slopis’ nurse contacted me right away to let me know that I should increase my dosing of Trileptal from 5 pills (1500mg) to 6 pills a day. It was a small increase, and it wasn’t much of an issue to turn my 11 pills a day total into 12. I was just hopeful it would work. That weekend, and early last week I was still having minor episodes. Not the full thing, but frequent little hints. So I was quick to go home and start taking the new dose. Since then it’s been sort of back to normal. I’ve had occasional hints of them, and today I thought one was coming but never did. I’m thinking good thoughts that the pills are working.

As I mentioned last time, I’ve be asked to come back early for my next checkups in Houston because of the MRI results in October, so I’ll be going on January 9. I’ve just been ignoring that for now as it’s not really worth worrying about. The part I’m not ignoring is the two weeks prior… I leave next Tuesday night for San Francisco to spend the holidays with my family. And on New Year’s Day, Jill and I leave for a week of skiing once again with the cancer survivors in Park City. So the checkups can wait!

I hope you are all doing very well. For the Pille Family, a reminder that the DVD is available if you are still in need. Just let me know.

Happy Holidays!

Today was a bit of a zoo. It was a frenzy of appointments, waiting for more appointments, meeting new doctors, genetics specialists, and nurses. But it’s finally done, and we finally have a game plan.

I first met with Dr. Slopis, who is a neurologist. He gave yet another exam on hearing, vision, etc., then walked me through my MRIs to discuss areas of concern, and how surgery and radiation could affect those areas. He also questioned me on any symptoms that I’ve been having. We discussed my seizures, my memory loss and other possible issues and how they work in the brain, and how the Trilepol that I’m currently taking is largely controlling those.

Next was a radiologist whose name I’m currently blanking on. She was there to help me understand the pros and cons of radiation… proton beam radiation vs. standard radiation. Proton beam radiation is much more precise in the area it radiates. This is generally a good thing, but in my case the edges of the tumor aren’t well defined so it may be hard to perfectly map the radiated zone. Still, she recommends proton vs. standard in my case. It’s much safer, especially considering the likelihood of me having Li-Fraumeni.

In between appointments we were greeted by a genetics nurse who asked us if we were willing to take part in a large study on my history. I’m not sure how much of the details I can give on it are, so I’ll just say it seems rather extensive, and I look forward to receiving some of the details on it in the future.

Finally, we met with Dr. Wolff for my exit meeting. While mom and I had lunch he met with this team of doctors I had been seeing for the previous three days. They discussed their varying opinions and came to a common ground on their recommended approach to treatment. Just hearing those words gave me a bit of comfort, even though any of the options is scary to me.

The best approach, from Dr. Wolff speaking on behalf of the entire team, is to start with surgery in the very near future to remove some of the bulk of the tumor. Prior to that I will have an MRI mapping done to monitor where my speech and motor skills come from in my brain to help the surgeon make more precise judgments on where to cut. I will be awake during the surgery and will be asked to speak and move various parts of my body so they can monitor me for any motor/speech loss. And if everything goes well, I could be in the hospital for as few as 3-4 days.

A few weeks after surgery, I will begin radiation therapy. This will be a six week process, with me living in Houston for daily therapy Monday-Friday.

Depending on the pathology reports from the removed tumor, they may also start me on a chemotherapy program. Should the tumor be a more advance grade than what is currently thought, an oral chemo plan would be added to the mix. It sounds like this is something I would just do at home.

It’s a lot to take in, and we haven’t scheduled the surgery yet. I needed the time to talk through this with my family. But I already know in my heart that it’s the only option. And so on Monday I’ll begin that process.

For now, I’m going to spend a few weeks living life to the fullest, seeing as many of you as I can, and thanking you all for the wonderful comments you’ve left, the amazing emails you’ve sent, and the inspiring conversations we’ve had.

Much love.