I wanted to get an update out yesterday, but Dad and I were both just worn out and calling Mom and Jill was all we had the energy for. After the appointments ended around noon, we came back to the hotel. I slept for two hours while Dad worked out in the gym. Last night we ended up going out for dinner and a horrible movie. Mindless entertainment (even lack of entertainment) were what we needed. A long week was finally over!

The results of the tests and plan to move ahead are largely in place, with a few more things to iron out this week. As I reported on Wednesday after the surgery, the biopsy came back with less-than-favorable results. We still don’t have full information on the grade of the tumor, but know that the grade of the cancer wouldn’t affect the recommended treatment plan.

I’ll be starting chemotherapy next Monday. One of the drugs, Temozolomide – the actual chemo drug, is an oral version that I’ll take five days in a row, once every 28 days. The other drug, Avastin, would have been given to me regardless of whether it was cancer or necrosis. This is given every 14 days intravenously. It’s a pretty simple cycle. I asked Dr. Wolff how long this would be given (if there was any specific timing), and as of right now, we’re looking at a year unless we see any major changes (growth or shrinking of the tumors). Both of these will hopefully be handled in Minneapolis, though I still need final confirmation from my doctors there. I’ll still be having monthly visits to Houston for monitoring as well, though these will just be 1 or 2 day visits now.

I will need to get the staples taken out and should be able to just do this in Minneapolis. Can’t wait. I can finally wash my greasy hair on Monday, but I’m going to sneak it in on Sunday night. It’s driving me crazy!!

That’s it for now. I’ll update more this week once I get some updated news from the doctors in Mpls. Hope you’re all well.

Love, Casey

It was scheduled to be a 4-hour surgery, and toward the end of that Dad got a visit from Dr. Weinberg. He let him know that the surgery went well, with no side effects. He also told him that at first all they were finding was necrosis. Unfortunately they ended up also finding cancer. This is just the high-level report, and we won’t have the full word until later this week. So we don’t know what grade the tumor is. But it wasn’t the news I was hoping for. Obviously Friday’s coversation will be big and include treatment plans.

For now, I’m watching junk TV and about to fall asleep. I’m also writing this on my iPhone which is a bit much. I should be out of the hospital around noon tomorrow/Thursday.

I’ll update you again once I have additional info tomorrow!

Love y’all.

Casey and Dad before 11/04/09 biopsy.

Dad and I made it to Houston safely yesterday and spent the day in appointments to prepare for tomorrow’s surgery/biopsy. I met first thing with Dr. Weinberg. The first step was to get a new set of lifesavers on my head (see above). It was a bit of deja vu having them added again. And I’m wishing I had them on for Halloween as it seems like everyone loves to sit and stare! Anyway, we reviewed the risks of surgery, and I got more information on how they would approach the tumor from the top of my head to ensure the safest route possible. It sounds like there will be about 1 1/2 inches of incision. Once they open that they will remove a portion of my skull (a small hole) to allow room for the needle.  The needle will be tunneled through to carefully avoid an artery on the outside of tumor, and an area that controls critical muscle function on the inside. Obviously it’s not without risks, but Dr. Weinberg is saying there’s only about a 5% risk of severe side effects. We finished the appointment with me signing off on those risks and moving on to anesthesia prep. I’ve been put to sleep so many times for surgery that it seems I’m a bit of an expert. After that we had a bit of time to go grab lunch and hang out at the pool.

It’s now 7:00pm the night before the surgery and I’m back at M.D. Anderson for my last appointment… an MRI of my brain with the lifesavers on my head. This MRI will be part of the map they’ll use for the surgery itself. The building is almost empty right now, but we’re still having tests… 8:00am to 8:30pm. And tomorrow starts EARLY. I’m scheduled for surgery at 5:15am!!

According to Dr. Weinberg, I will be staying at 23-hour watch, so I’ll be in the hospital until Thursday (they don’t know if it will be ICU or regular room until after surgery). Assuming I’m not having any side effects from the surgery, I’ll be able to get out on Thursday, and then we’ll be returning for appointments on Friday to discuss results.

SOooo — a busy night and an early morning. I’ll keep you posted after surgery if/when I can, and will let you know the results once I hear them!

Mission burrito wishes and Amy’s ice cream dreams. Love, Casey

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 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.

Yesterday was a good day. By noon we I was cleared to leave the hospital and go stay with my family at their hotel. It was good to hear for no other reason than that I was getting healthier, but also because I got to leave the hospital and be with my family more. By 12:30 we were leaving, and by the time we reached the hotel, I already had relatives from San Antonio (Uncle Jim & Aunt Jan) and Austin, TX (my cousin Meg) in for a little visit. It was much needed. Hospitals have a way of getting to me after a few days!

The day was filled with the best food and conversation I’ve had in a while since hospitals don’t offer much of that, so it was a much needed treat. Unfortunately, by the end of the evening it meant saying goodbye to them, as well as Jill who had to fly back to San Francisco very early this morning. I knew it was all coming, but it doesn’t make it easier. I’ll see them all again soon, though. :)

For now, I’ll just be spending a few days in the hotel, waiting for an appointment on Thursday before we’re able to start the drive back to Minneapolis that afternoon. I imagine we won’t make it there, however, until sometime Friday afternoon.

It’s great to be feel a better part of the real world, and be out of the hospital!

Love you all.

It’s Friday, the 16th. And with a little bit of luck I might be getting out of the hospital sometime tomorrow. The first sign — I got the turbin removed! You can sort of see my scar that runs a good part of my head. There are a LOT of staples holding me together.

I’m a little bit dizzy today… it’s the first day I’ve spent more than just a couple minutes sitting up in something other than my bed. I also took a shower, which felt very nice. All of this probably caused the dizzy spell. Either way, I’m enjoying it. Aaron and Dad are reading, and I’m just checking in on emails. There are too many to respond to, so this is the best I can do for now. Just know that I love you all very much and can’t wait to talk to you very, very soon! :)

Casey

I’m absolutely amazed by all of you… sending your warm thoughts, looking out for me. I just read through all of your comments for the first time, and I can’t even tell you what it all means to me. I know I have some amazing people in my life, but your support has gone well-beyond amazing. I love you.

So the picture above is me in my wrapped head, and something that looks like a denim tanktop, although it’s really a gown. I just took it on my computer. Mom, Dad and Jill went home for the evening, and Aaron is reading a new book in the corner. And I decided I finally had the energy to read. I’ve mostly been sleeping and just awake for an hour here and there. The drugs are wearing off though, and my life is coming back. It feels amazing.

At some point I’ll write more detail on being awake during the surgery. It was so unreal. Being asked to identify illustrations of animals, to read words on cards, to just have general conversation about my life… all while an insanely talented surgeon worked to slowly and accurately remove the unhealthy part of my brain. I’m more and more amazed by the medical industry every time I’m part of it.

For now, just wanted to say THANK YOU. I’m in a regular hospital room now (instead of the intensive care room that I was in). Aaron and I had a regular dinner. And while I really don’t care to wear this itchy wig anymore, I couldn’t possibly change a thing about this moment. I’m alive. I’m well. And I have the most amazing set of family and friends looking after me.

I’ll update you more soon.

Love you.

Casey

(Since Casey is in surgery resting peacefully right now, this is Aaron providing an update.)

Just one quick update: Casey is now out of the ICU and into a regular room. Right now he’s resting, his glasses splayed across the white bandages wrapped around his head. He probably will be here until Saturday. The Contact Info page is updated with his room number and current address.

The surgeon stopped by this morning to check in with Casey. He did an informal waggling-finger test of Casey’s vision and found, surprisingly, that it doesn’t seem to be changed at all. Going into the surgery, Casey was told that limited vision would pretty much be a guaranteed side effect. Casey seems to be the exception to that rule.

–Aaron

(Since Casey is in surgery resting peacefully right now, this is Aaron providing an update.)

7:00 p.m.
Casey’s neurosurgeon, Dr. Weinberg, came to talk to us. He was younger than I expected — in his late 30s or so. He exuded confidence and even a hint of pride as he spoke.

The surgery went better than planned, he said. They were able to remove more of the tumor than they had anticipated, reaching difficult areas between his brain hemispheres and near the base of his brain. He held out his hands with his two thumbs and two index fingers touching, a circle larger than a hockey puck, illustrating how much tissue they removed.

Dr. Weinberg clearly liked being asked questions about the surgery and what to expect next.

Will he feel much pain tomorrow?

Dr. Weinberg pursed his mouth and said “No, some Tylenol is all he should need.”

Will he still have seizures? “We hope not. He was awake for around one hour during the surgery, until he began to show a little agitation and had one seizure, which we were able to quickly control.”

Will he still need to take anti-seizure medication? “That’s a call for Dr. Wolff (the neuro-oncologist) to make, but probably he will.”

How about his vision? “As we expect with almost all surgeries in this area of the brain, his vision probably will be limited in the upper quadrant.”

Any word on the possible P53 gene mutation? “We took samples of both good and bad tissue so we should be able to more accurately test for this mutation.” (A positive test indicates that a mutation is present, which would mean that Casey’s genes don’t control bad cell growth as efficiently or accurately as most people — which could explain his multiple experiences with cancer.)

His speech? “We were able to stay away from the speech areas of his brain, so that should be unaffected. You should wake him up before you leave and make him talk to you.”

So, a little reluctant to wake him from his much-deserved sleep, Jill and I stood by his bed and said softly, “Casey… We’re here to see you…”

He didn’t respond. We looked at each other.

A little louder: “Casey, we love you and we’re really proud of you.”

His eyes fluttered open.

“Hi,” he said.

That’s what we were waiting all day to hear.

He will spend tonight in the ICU and should be moved to a regular hospital room tomorrow to stay for a day or two of observation.

More tomorrow, possibly even from Casey himself.

–Aaron