We would like to send a heartfelt thank you to Casey’s wonderful friends at BBDO/Proximity for organizing such a great afternoon at Elsie’s Bowling Center on Sunday. Casey was touched by the overwhelming support from co-workers, friends and family. The event was a success on many levels, and the love and support from so many people was a huge boost for Casey.

LIFE SINCE DECEMBER:

The last several weeks have been extremely difficult for Casey. In December, Casey had to leave his job at Proximity after the tumor in his brain started to affect his speech, cognitive skills, and his ability to read and write. His doctors at both MDAnderson and Abbott Northwestern agreed that his existing treatment protocol was no longer effective and recommended that Casey try a new chemotherapy.

Just before Christmas, Casey started this new chemo treatment. It was set to be a 3-day, in hospital treatment that he would undergo every 4 weeks. This treatment is quite aggressive and needs constant monitoring as it is administered through an artery that delivers the chemo straight to the brain. Doctors anticipated to see some swelling (which is a good sign that it is working), however Casey responded to the treatment with a much larger amount of swelling than expected. As a result, Casey experienced even more difficulty with speech, reading, writing, etc. He also started having difficulty with his motor skills on his right side. Furthermore, Casey had to put the treatment on hold until the swelling was under control.

In January, Casey started doing Hyperbaric Oxygen Therapy to help with the swelling. He goes into a chamber that contains 100% oxygen and has increased air pressure. He has also been put on increased levels of steroids and switched back to his old, pill-form, type of chemo to keep the tumor from growing until he is well enough to go to the next step.

On Monday, Casey had an MRI. This revealed that while Casey still has some swelling, the tumor did shrink as a result of the intense chemotherapy treatment that he did before Christmas. His doctor feels positive about this, but says that he wants Casey to continue with the Hyper-baric Oxygen Therapy for another couple weeks. Once Casey is ready, he will want to do the aggressive chemo treatment again, but either at a lower dose or in a different form.

Over the next few weeks, Casey will be in Minneapolis Mondays – Fridays to do his Oxygen Therapy. Over the weekends, he will most likely be in Mankato. Although it is difficult for Casey to read your texts, emails, cards, and comments, he loves to get them! (We are always there to help him when he needs it.) He wants to be sure to keep in touch with people the best he can. And until he is able to take over his blog again, we will do our best to keep you all informed. (although we’ll never be able to write as good as he does!)

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

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

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