As usual, summer is flying by. It felt like a few hours ago that I was eating tasty food, visiting museums, seeing the sites and hanging out with Jill & Ben in the quaint cafes of Paris. We had a fantastic vacation… something we all needed this year. We were there for 10 days and went basically non-stop from the moment we stepped off the plane. (Except an occasional nap on my part.) Museums, monuments, parks, palaces, the Eiffel Tower, amazing restaurants… one after another… and we felt like we barely scratched the surface. I also got to see my friend Preston who lives there. It was a great time.

See more photos here.

Suddenly I was back at work, busy catching up from being out of the office, knowing that soon I’d be out once again for a visit to Houston.

About a week before my scheduled appointments, I received a call from Dr. Wolff’s nurse. She was calling to inform me that Dr. Wolff was no longer with M.D. Anderson. “What??” I was shocked. According to her he had landed a wonderful opportunity with a center in Boston, and was originally scheduled to still see me but had to make a change in his plans. She went on to ask if I still wanted to visit for my appointments. It was my annual/full checkups, added to the fact that I’m still on chemo, so I didn’t understand why that would even be a question. Of course I needed to go! I flew down last Tuesday, and in starting my appointments quickly found out that Dr. Wolff was able to stay through the week afterall. Phew!

As mentioned, I was not only there for the standard brain scan, but also for what is now my annual visit for the more extensive testing where we check more of my body for potential tumors and recheck the old areas. As a result, I spent 3 days in tests rather than the normal 1 day.

On Wednesday I went through a bone scan, an electroencephalograph, blood work, and an MRI of my brain and neck. Thursday continued with an ultrasound of my abdomen, and two very lengthy MRIs of my abdomen and pelvis that lasted until 10:00pm. And Friday ended with more blood work, two more MRIs (t-spine and l-spine), and finally visits with both Dr. Slopis and Dr. Wolff and a surprise stop-in by Dr. Anderson.

In a period of three days I spent almost 6 hours in an MRI tube, had 5 needles in my arms, sat on other tables for other tests another few hours. It was crazy, but surprisingly simple at the same time — I’ve decided to use this as my annual visit for this reason. As a cancer center, M.D. Anderson has more ability to check so many areas with so many different scans for different cancers in one simple getaway. Efficiency is fun!

Perhaps you can already tell, but the results were good. Of all the tests there are only two items worth mentioning:

1) The MRI of my abdomen showed what is likely a cyst on one of my adrenal glands. It is not of any concern to the doctors.

2) The tumor in my brain is appearing exactly as it did two months ago. No growth! (Though no shrinking either.)

Given the results of all these tests, the conversation quickly turned to my chemotherapy. I’m on cycle 9 right now (starting last night), and am scheduled to go at least through October. So — how much longer? Dr. Wolff has frequently used three simple questions in what would warrant stopping treatment:

1 – Is the chemo no longer working? No, it’s working, so keep using it.

2 – Has the chemo reached dosage limits or become toxic? No, I generally feel good, so keep using it.

3 – Has the tumor gone away or no longer cancer? We’re not sure, and can’t easily tell, so keep using it.

So that’s the answer for now. I’ll just keep taking it until one of those happens (obviously we hope for the 3rd). And if you asked me before I started this chemo if I’d be okay with that, I would have said HELL NO. But given the simplicity of it, and the success thus far, I’m alright with it now.

As I mentioned, Dr. Anderson popped in while I was with Dr. Wolff to say hello and check how things were going. Dr. Wolff excitedly told him the news and pointed out that it’s been 10 months with no new signs of new or existing tumor growth. He reminded me (and in some ways pointed out for the first time) how lucky that makes me given the success rates of people with my grade and type of tumor. Quite simply, I’m beating the odds. I  guess it just made me that much more grateful for having that team to help me.

Unfortunately while all of this was happening I was remembering that Dr. Wolff was leaving. It was my last appointment with him! As it turned out, I was his very last appointment as an M.D. Anderson doctor. I hope he sees the success in my treatment as a great note to leave on, and wish him so much more success in Boston.

Strangely, going through all of this treatment has almost been therapeutic lately. I’m a member of the Anderson Network which has also given me the chance to work with other patients in the early stages of their treatment, getting to talk to them about their fears, concerns, laughs, awkward moments, etc.. There’s a lot of us, and I like that M.D. Anderson has these kinds of resources available, and I’m happy to help out.

Anyway, that’s the update. I’m off to take another dose of chemo and call it a night.

Hope you’re all well. Love you.

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

Tomorrow will be my first week on Temodar, the chemotherapy drug. Each day (Monday – Friday) I’ll be taking the drug at bedtime. To avoid the nausea side-effect, I’ll first take Zofran about 6 hours before I plan to take the chemo drug and then once again right before I take it. In prepping with that, and taking the actual drug at bedtime we hope it will help avoid the worst of the side effects. I also have to make sure I’m taking the medication on an empty stomach (yet I’m supposed to try and gain weight??). I’ll do this for the first five days of every cycle.

Next Monday I’ll be going in for week 2 of 4, which is for the Avastin infusion. I’ll also start my weekly check on my blood counts.

Week 3 of 4 doesn’t have much going on other than the weekly blood check, however it is supposed to be the week where my blood counts are at their lowest.

And finally, week 4 of 4 I’ll have my other Avastin infusion. This completes the 28-day cycle, and at this time we plan on me being on this plan for a year unless something changes and warrants new drugs or a new cycle.

In my meeting with Dr. Trusheim on Thursday I got to spend some time with the team discussing the details of the drugs, their side effects, and what to expect as I move through all of this. If the Zofran can do its job and I’m able to avoid nausea, it may be a little easier to tolerate than what I remember from when I was on chemo in ’95.

Unfortunately, due to my Li Fraumeni syndrome, the chemo puts me at higher risk of developing tumors elsewhere in my body so I’ll be having body scans (most likely CT) moving forward to make sure we’re keeping the rest of me in check. That cycle is still TBD.

I was also able to get the staples removed from my surgery/biopsy that I had in Houston. Ahhhhhh.

After the stressful week, I got to see Ray LaMontagne with my friend April on Friday. It was a great time and a nice escape from all the cancer stuff. Thanks April!

And on Saturday I decided to go down to Mankato to see Mom & Dad. Food is going to start tasting funky soon, so I figured it was the last chance for Runza weekend. Mmmmmmmm.

I’ll keep you posted on how things go this week.

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. :)

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!

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.

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