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.