Dad and I flew down to Houston on Sunday. We spent the day watching football waiting for things to get started on Monday. (For those of you that know me I’m not a huge football fan, so clearly I was already feeling the nervousness of the appointments!) Monday morning I started with bloodwork. I then went for an MRI, followed by a new test for me, an MRS. It was the last test for the day, which meant we had a bit of free time so last night we went to see Law Abiding Citizen. It was the mediocre entertainment and tasty popcorn we needed to forget the stress.

Today started a bit earlier and lasted a lot longer. At 7:00am I had my PET CT, and then the doctor appointments began. We went to see Dr. Slopis but were quickly asked if we would visit Dr. Weinberg (my surgeon) first. According to the nurse, Dr. Wolff said that Dr. Weinberg would walk us through the results of the tests and discuss our plan for biopsy and then we’d meet with Dr. Wolff and Slopis to discuss the plan overall later. Something in her voice made me think she already knew the results. Of course as soon as Dr. Weinberg walked in he was sharing the news… the MRI is showing growth of the two spots. The latest version is posted above… the two areas of concern are circled. He also told us that the MRS supports that idea, showing that same suggestion of growth. He didn’t have the results of the PET CT yet as I had just gotten out of that scan.

The conversation quickly went to the biopsy. We had been told that the biopsy would be performed on Thursday if needed, but unfortunately Dr. Weinberg was scheduled for a six-hour surgery and is now unavailable (since mine wasn’t a confirmed appointment). He’s not in surgery on Fridays and is out all of next week. So he gave us two options… he could recommend a surgeon for Monday or we could come back the following week and have him perform the surgery… It was an easy decision for me, so we’ll be coming back on the 2nd of November to start prep for the biopsy.

By the time we made it back to Dr. Wolff’s office, he was in with other meetings so we were asked to come back at 2:00. Dad and I grabbed lunch and went to sit in the park to enjoy the sunny warm weather, and keep our minds off of all of this.

We met with Dr. Wolff and Dr. Slopis and a med student for a couple of hours, discussing the PET CT, medications, treatment options, etc., etc. Most interesting was the results of the PET CT. The scan shows no signs of growth and, if anything, appears to have some level of fading of the area of focus. So they were quick to point that out as a sign of hope. Dr. Slopis also gave me a recommended switch to my prescriptions to possibly help keep more level doses and hopefully help soften my seizures. I’ll be taking smaller doses three times a day instead of larger ones twice a day.

Finally, we discussed the treatment option that Dr. Wolff is leading and went to meet with Dr. Brown who is also working on the study. He explained in more detail exactly what the plan involves and how it is intended to provide more specific treatment recommendations based on the slight differences in cells in my tumor vs. cells in someone else’s of the same kind (i.e., my brain tumor vs. someone other brain tumor). It’s a very interesting program, and I definitely want to take part in it.

So what now? We wait an additional two weeks. I’ll be coming down on the 2nd, having scads of tests on the 3rd to prep for surgery, and having the biopsy on the 4th. I’ll then meet with Dr. Wolff on the 6th to discuss biopsy results and make decisions on treatments as/if needed.

Sorry for the long rambling. Just wanted to get the word out. Hope you’re all doing well.

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. :)

Just wanted to wish you all a happy Valentine’s Day. It’s not a holiday I’ve celebrated much in it’s typical style, but for two years I’ve celebrated as the anniversary of my surgery. And about this time two years ago, I was getting back to my hospital room with my family after my successful surgery.

Mom and Dad were up last night and we went for dinner and it came up in conversation as one of those “wow” moments… it’s hard two believe two years have passed!

A brief update on seizures, medicine, and all that fun stuff: I’m smack in between visits to Houston, and will be scheduling my MRI in Minneapolis for the coming weeks. I’ve actually been delaying it just because work has been so busy.

I’ve been having more intense seizures again, and the last time I updated you all, I had been put on Inderal in hopes of dealing with my migraines. After almost two weeks of being on the drug, I had a very intense dizzy spell at work. It was something like walking on jello in a marching band, or at least that’s how I was describing it at the time. Very freaky though. I called the team in Houston and we lowered my dose, and since then I have only had very mild dizzy spells. The seizures have remained though… my most recent being yesterday in the middle of a conference call at work. They’re frustrating, but I’m trying to avoid the stress that only makes them worse. Hopefully they’re only temporarily stronger. If they’re still not resolved by April/May (when I return to Houston), I imagine we’ll be trying new drugs. That has it’s pros and cons, as my current meds have the least amount of side effects.

Along with the meds, the Houston visit will be my annual colonoscopy, bone scan, MRI, blood work, EEG, and all the other fun stuff. I’ll keep you updated!

Hope you’re all thawing from our long winter.

Love you.

I can’t believe it’s already mid-January. For as miserable as our winter has been, I’m grateful that time is at least not standing still. I’m also VERY thankful for the last few weeks of fun over the holidays!

It all started with our family getting together in San Francisco. It’s my favorite city, and I got to spend it with my family hiking, biking, stair climbing, hat hunting (thanks Ben!), Golden Girls trannie watching, movie viewing, museum exploring, golfing, shopping, and most importantly, fine dining thanks to the talents of Jill, Ben and Mom. We also got to see my aunt and uncle Joe & Nell and my cousin Dan.

And while there was a lot going on, there was also a lot of time to relax and hang out just the five of us (plus Ruby). But as always, the time flew by, and suddenly 8 days were gone. Luckily, Jill and I were just getting our vacation started.

On New Years Day we left San Francisco for Park City for our second ski trip with the M.D. Anderson group. We consider ourselves very lucky to get to join such an amazing group of survivors, their family and friends. This year I got to ski with Heike as my sole trainer, and once again she was skiing circles around me. But I must say, I was pretty excited on the first day to see that skiing on one leg is a lot like riding a bike… I picked up basically where I left off a year ago and was able to improve my skills throughout the week. And despite having a cold for a couple of those days, I got a few days of great skiing in with the group.

There were a lot of familiar faces, and a lot of new additions to the group. One of those additions was another guy named Casey. He and his wife were along for the trip to film a documentary on osteosarcoma survivors, their experiences, the talents of M.D. Anderson and Anderson, MD. I’m anxious to see it when finished.

Week #2 of my vacation quickly slipped by and it was finally time to say goodbye to Jill and head back to Houston with the rest of the group. I met up with Dad and headed to the SpringHill for another couple of nights. I had a day of appointments scheduled for the 9th, starting with an MRI and EEG in the morning, and doctors visits with Wolff and Slopis that afternoon. I have to admit, I headed to Houston feeling a bit nervous.

I’ll spare more suspense and tell you that the bulk of my test results came back positive. My MRI is basically a mirror image of my October MRI. It’s still showing the hot spot in the area just inside of where the removed tumor once lived, but there are no signs of growth or increased intensity, so the doctors are not concerned, and we’ll be moving back to my standard four-month checkup cycle.

In discussing my increase in seizures and migraines, I mentioned that I had one the night prior to my appointments. However the EEG showed basically the same results as my test in December with “mild to moderate” activity that was basically normal for someone with my type of surgery. In looking for treatment options we’ve decided that I’m at a cap on my current medications. I could take more, but would be basically sleeping all day (from too much Trileptal) and crabby as hell when I was awake (from too much Keppra). So instead of raising those doses, we’re taking a new approach.

I learned that migraines and seizures are actually somewhat related in how they can affect each other. People who suffer from seizures often get migraines, and people with frequent migraines can sometimes end up having seizures. So to deal with having both, we’ve decided to attack from both sides. Dr. Slopis has recommended a small dose of Inderal (a drug usually prescribed for high blood pressure) to help soften the migraines which will hopefully in turn lessen the seizures, which will in turn lessen the migraines, and so forth. I’m certainly willing to give it a try, and will keep you posted.

In general, it was a successful trip to M.D. Anderson. And to celebrate, Mike and Rose (Ben’s parents) joined for an evening of dinner and conversation. They’re currently living in southern Texas and drove up to Houston to say hello. It was great to see them!

We left Saturday for what is normally a direct flight back to Minneapolis. Dad was lucky enough to follow that norm. I, however, had what is certainly the strangest route home from Houston. I flew from Houston to San Antonio to Denver to Minneapolis. What???!

I was lucky enough to have Meg come and visit me at the airport in Denver. I had a four hour break so we hit up a bar for some margaritas. It was the perfect end to what is certainly one of the nicest holiday breaks I’ve ever had.

I hope you all had great holidays and wish you a happy new year.

Love,
Casey

P.S. I’ve added some photos from San Francisco and Park City to the Photos page.

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!

After a tough week saying goodbye to Grannie, I came back to two days of work before it was time to head to Houston for my semi-annual checkup. After a LONG day of flying (we were diverted to Baton Rouge for several hours due to storms in Houston), I got in Wednesday night and had two full days of appointments.

It was a typical visit… MRI, blood work, electroencephalograph (I type that just to impress you all), cognitive testing, ultrasound, and doctors visits.

The appointments were all on Thursday, and the doctors visits were on Friday. As it turned out, the office was VERY busy on Friday, so I ended up meeting with Dr. Slopis and Dr. Wolff at the same time. And their first words were that things look generally good. But I was sensing a “but…” that soon followed.

They were asking me about some of my symptoms… the bloody noses that I have, the seizures, and recently, the migraines. As I detailed the frequency in which I’ve been experiencing these symptoms (slowly increasing frequency), they proceeded to tell me that there is a spot on my MRI that they want to monitor closely. It is a spot above the portion of the tumor that was removed from my brain, that had been radiated after surgery. And it is showing up, but that it MAY NOT BE ANYTHING to worry about. And they stressed that a couple of times. It could very easily be a latent result of recovery from the surgery, from the radiation, or may just be a fluke thing showing up on the MRI.

That said, they are requesting that I come back earlier than planned. I wasn’t going to have to return until May of next year, but I’ll be going in January instead, just to make sure they can keep a very close eye on any possible changes.

Not the best news, but certainly not the worst. And I’ve decided to take their position and not worry about it. Until we know what it is, it doesn’t help much for me to stress about it. For now, I’ll focus on the holidays in San Francisco, as well as Jill’s and my return to the slopes in Utah for another year of skiing.

Oh! The photo above! I went down to Galveston on Saturday and was shocked at the damage from the hurricane. I knew they were nasty, but wow. WOW! Boats on the freeways, houses with boats shot through them, streets of beautiful old oak trees killed by the flood of salt water, and building after building after building along the pier and coast that were simply destroyed. Very sad.

Hope you are all doing well.

Casey

Hey everyone! Hope you’re all enjoying summer. We finally got rid of the cold weather and are enjoying some sunny warm days. I still am waiting for some good thunderstorms though! Instead, I’ve been spending lots of time on the bike trails. It’s kind of become my thing lately.

For those who haven’t heard, I left Target in pursuit of a job that felt more my style. I’m now a producer at Proximity Minneapolis… an agency with offices around the globe that just opened up in the city. There’s a total of five of us at the moment, and that alone gives me reason to celebrate. I know everyones
names! :) Proximity is tied to a traditional agency, BBDO, and so we’re sharing offices with them. It’s been an outstanding month getting into this new role.

On Monday I got a call from my neuro-oncologist in Minneapolis and was reminded of my MRI “this Thursday” (today). I had it in my iPhone as something scheduled for July, so it was definitely a surprise. Regardless, instead of rescheduling, I decided to just go ahead with it.

I went in for the MRI (which was only about 25 minutes this time!), and followed-up with Dr. Trusheim. The news was good. “Things are looking great.” That’s all I needed to hear. And there wasn’t much more to discuss, actually. Things have been good the last couple months. Only minor hints at seizures… nothing to concern myself with. Oh, and I’ll be getting a new leg soon. Christmas comes early this year!

The appointment did sneak up on me though, so by the end of the day I was happy to just go home and relax. I quickly forget how tense they make me feel.

Hope all is well with you. I’m looking forward to Jill flying in for George Michael in a little over a week. We’re also heading to see both Grandmas the following weekend. Grandma Pille is celebrating 85 years!

Talk to you soon.

Just wanted to post a quick update on the stuff happening last week…

On Friday, with symptoms not really subsiding any, and at the request of my doctor at M.D. Anderson (Dr. Slopis), I went in to have an EEG at my clinic in Minneapolis. It’s meant to measure brain function, through the help of many little electrodes glued to my head. It only took about an hour, but I didn’t receive any word on the results until sometime Monday. Those results were something I sort of knew already, but didn’t want to hear again… that I am still having seizures. The nurse was quick to deliver them and only mentioned that they’ll be discussed more at my appointment on Thursday.

I called the team in Houston, and let them know the results. Dr. Slopis is out this week so we’ve scheduled a check-in for next Monday. In the meantime, I’m scheduled to have my monthly MRI at Abbott on Thursday, as well as an appointment with my neurologist. He’ll clearly be looking to change medication, or add another drug to the mix, to try and resolve this. Dr. Slopis will have his own opinion. So my current plan is to get the results of the MRI on Thursday, along with the recommendation for the seizures and wait until I can speak with the M.D. Anderson team on Monday before moving ahead.

I realize it’s not the end of the world. It’s scary to experience these things, but I know what they are, and I know how to deal with them. But I also want to make sure I’m making the smartest decisions that put me in the best place to hopefully end them for good. So I feel right knowing that there are two teams working on their own recommendations, from which I can hopefully be put in a much better place. Stay tuned.

My MRI is Thursday… think good thoughts!