Where to begin? First, my apologies for the long delay in updates. As has been the case lately, work eats up a lot of time, and by the end of the day chemo has me exhausted. So at night instead of being social I’m either sleeping or watching Glee (or Nurse Jackie, or United States of Tara, or……. too much tv).

So what’s happened in recent weeks?

I had been on my standard chemo cycle, and completed round #7 earlier this month. Unfortunately, that same week I received an annoying reminder of my jaw radiation that I had over 12 years ago for osteosarcoma. As some of you may know, the radiation not only destroyed my skin and gums, but also the roots of the three teeth that were in its path. And in the years since then I’ve lost two molars, and each time they pulled the tooth there was very little left of the roots. Well, I was having some pain in the third tooth (the second bicuspid for all of you dental nerds). I went to an oral surgeon for an x-ray and there were hardly any signs of roots for the thing. Obviously I needed surgery, but when he went to pull the tooth, pliers in hand (and around my tooth), it took the slightest pull the yank the thing out. There was nothing holding it in. Still, I had to deal with the annoyances of the surgery, plus extra antibiotics and gargley mouth washes since I’m already on chemo and really shouldn’t be having surgery of any kind.

The recovery was basically fine, but this little interruption did cause a bit of delay in the chemo cycle. Given the risks, my doctors decided it best to hold on two Avastin cycles. As a reminder, Avastin’s job is to cut blood supply to the tumor. Obviously cutting blood supply to a healing wound would not be good! So I should be going in tomorrow morning for Avastin, but instead will just be getting blood work to get me set for chemo round #8 next week.

In the meantime, life has been zipping by. The weekend after the tooth excitement was Mother’s Day weekend. Mom and I flew out to be with Jill & Ben (and Ruby). It was a short getaway for me — only three days — but still nice to be out there. Mom was able to spend a few extra days. We got to spend some time out in the beautiful weather, including a round of frisbee golf in Golden Gate Park. I hate to brag, but I seriously kicked ass. I had the highest score! When I threw a frisbee right at mom’s back… fifty feet away, to my left (not even in front of me)… I knew it was going to be bad. Seriously, I am horrible. But we had plenty of laughs!

I flew back on Monday for a couple days of work and then was off to Houston that Wednesday. This was one of the shortest visits in time spent actually in tests. It was pretty much just blood and an MRI, followed by visits with Dr. Wolff and two student doctors (one of them actually Dr. Wolff’s daughter!). All tests turned out well. The MRI showed no changes since the last one in March — a good sign. With the tests going so quickly I was able to spend a bit of time relaxing — dinner with my friend Mark, a screening of How to Train Your Dragon (which I recommend), checking out some new restaurants, and of course, ice cream at Amy’s. I’ll be going for a much more extensive series of tests in July.

And now already a week has passed since I got back! This week was back to the busy world at work. But I was able to also spend some time finalizing an upcoming vacation with Jill & Ben. We’re going to spend about 10 days in Paris next month! I cannot wait for the getaway. With few small exceptions, it seems the only time I’m away is for medical reasons, which is NOT vacation! So we are counting down the days!

Hope you are all doing well!

Love,

Casey

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’ve just finished round 4 of chemo. Like the previous three, there really wasn’t much to report on. Tomorrow morning I go in for my infusion and have the day off to relax and catch up on sleep. My next doctor appointments are scheduled for early March in Houston. I’ll have more news then!

Hope you’re all doing well.

Love, Casey

January sucked. It’s that simple. It was a reminder of how ridiculously short/painful/trying life can be. It started with the continuation of my chemo cycles and an overwhelming amount of work. And it turned into the most difficult loss our family has ever experienced, through the passing of my sister & brother-in-law’s unborn son. It was all a reminder of what is precious in this world, what is important and what is insignificant.

It left us ready to start a new year, now. So that’s what I’m doing.

And this new year started with better news. While the chemo continues, it is going well. I spent part of last week in Houston for monthly checkups. In one line from my MRI report: “Mild improvement in the multiple foci of enhancement in the left insular region. This may represent response to treatment. There is no evidence of tumor progression.” It’s about the best it could be. Next week starts chemo round #4.

I hope you are all doing well.

In memory of Owen — I love you.

Casey

Just wanted to send a quick message to wish everyone a very happy holiday. The snow is keeping me very local this year. I’ll be spending it with Mom & Dad in ‘Kato. It’s the first year of my life that we haven’t gone to spend it with other family! So I’ll definitely miss Grandma and the gang in Iowa and everyone else we were going to be able to see.

Regardless, have a great time. Be safe on the ice. And for you lucky people in warmer places (ahem, Jill & Ben) wish you were with us!

Love you.

Casey

Sorry for the delay again! I’ve been so slammed at work that I’ve been ignoring computer time at home, and suddenly it’s mid-December and I’m on to Chemo Round #2. I’m happy to report a few things…

1) Thanksgiving with the family in Omaha was a great escape. I got to spend good time with the family, eat way too much food (including my favorite, Maria’s, above) and learn how to lose lots of money playing poker. We also took a stab at shopping Black Friday, and managed to score some great deals. As holidays always seem to do, it served as a nice escape from the medical drama.

2) After Thanksgiving I moved into Week #3 on my chemo cycle which is when my blood counts would drop the most. I definitely started feeling it… worn out by the time I dragged myself home from work every day. But I survived!

3) Week #4 started with my second infusion of Avastin for that cycle. Not really much to report on it… so far those infusions are pretty straight forward. I go in for blood work, get the results, if the results are good, we go on with the infusion. Let’s just hope they keep moving so smoothly.

4) The second half of that week I was off to Houston for my monthly checkup/MRI. The weather had just turned to sh!t in Minneapolis, so I was sort of excited to escape. And as you can see below, Houston hasn’t dealt with much of a fall yet, and certainly no winter. It was “cool” at best, but everyone in the city was in a panic about how cold it was. My hoodie kept me happy.

The trip was crammed pretty tightly with tests. Blood work, an EEG and MRI, followed by appointments with Drs. Slopis and Wolff. I flew down expecting a continued report on the existing cancer, and not expecting much change. So when I finally got to meet with Dr. Wolff, it came as a great surprise to me to see him leap into the room with a huge smile on his face. He was like a kid on Christmas as he exclaimed that brightness of the tumors on the MRI were already much more faded. And he pulled both of them up to prove it. They definitely look noticeably different and I was very excited to see it. They’re also not showing any additional signs of growth, which is equally wonderful. And while it’s way too early to tell much of anything, I’ll use this as a good sign and hope it continues.

He also handed me a copy of a movie that has been made about some of the people and patients of M.D. Anderson. As some of you may remember, I was (making poor efforts) to film my life in Minneapolis, along with my experiences with cancer and treatment. Well, the team making the movie have finished their work and debuted it at M.D. Anderson the week before I arrived. I was so happy to have a copy of the movie and watched it that night in the hotel. It’s called The Art of the Possible, and it left me feeling rather lucky to share a screen with some other amazing cancer fighters, and reminds me of how lucky I’ve been to have Dr. Anderson (and Wolff, Slopis, Weinberg, Trusheim) and M.D. Anderson there to help me. So many, many thanks to Casey and Courtney Hayward, and the entire team behind the movie. Once I get more information on how we might be able to get more copies, I’ll let you know.

5) Last night marked the start of Round #2 on chemo. This round will be slightly more intense as I’m now on full dosing with 400mg instead of 300mg. Although it wasn’t a result of the chemo, I spent the day at home yesterday… sleeping for almost the entire day. It was a bit of a reminder of how much this stuff affects my body. Regardless, I started the drugs last night and will continue through the rest of the week. Here we go again!

I’ll keep you updated on how this round goes. Hope you all had a great Thanksgiving and are moving on to plans for the Holidays.

Love you,

Casey

Saturday marked the end of my first week of chemotherapy. Based on my experience with it in the past I thought I’d have all sorts of horror stories to share, but it went fairly well. Starting Monday night and ending Friday night, I took Zofran at 5:00p and 10:00p, then took the actual chemo drug Temodar right as I was going to bed. The whole week I kept a bucket next to my bed, imagining the worst. But the good news is that I never really felt all that close to throwing up. I guess Zofran was the magic bullet. Or Temodar is easier than the Adriamycin/Cisplatin/Ifosfamide I became so used to when I was 17. Or some combination of the two. Regardless, the worst it got was an occassional bit of upset stomach that lasted a few minutes. Still, I was happy to hop off it after those 5 days.

Today was my first day of bi-weekly Avastin infusions. Like the Temodar, it was pretty easy. As you can see above, it was just like a standard infusion this time, delivered through my arm. (I’ll be looking at whether or not I should get a port-a-cath again to prevent messing up my veins and looking like an addict.) I started at the infusion center at 9:00a and didn’t get out until sometime after noon, but it will get quicker the next few times and eventually will just take about 30 minutes to check my counts and then 30 minutes for the infusion. Again, not bad.

So next steps will be waiting and watching blood counts. With the combination of last week’s chemo and today’s infusion, it’s expected that sometime next week my blood counts will drop. We’ll see what happens!

I hope you all have a great Thanksgiving. I look forward to a visit to see family in Omaha.

I also want to send a HUGE thank you to all of you for the kind words, well-wishes, prayers, soups, banana breads, pumpkin breads, egg bakes, tater-tot hot dishes, cupcakes, and ready-to-mix mashed potatoes. For those nights where I’m tired, I’ve not had to worry about what to eat for dinner (or dessert!). So thank you.

Love,

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

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.