I’ve been home for about a week now. It’s great to be back with my friends, and getting to see people I haven’t seen in a couple months (including Dad!!). It also felt a little strange to arrive here. For the first time in quite a while I haven’t had treatment to worry about. As odd as that may sound, it’s a mode I’ve been in so long that I sort of got accustomed to it. Now my focus is getting my energy back so that I can return to normal life, including returning to work, and waiting for my hair to (hopefully) grow back!

I have my follow-up appointments next week in Houston. Mom, Dad and I will be flying down on Wednesday and returning on Saturday. Thursday and Friday will be packed with appointments. They won’t necessarily provide complete results of the radiation, but they’ll certainly lay the ground work for my future scans. I’ll be having monthly scans for the next year, and will be flying to Houston to meet with the team every other month.

As part of my effort to get back to good health and build energy, I bought a bike this weekend using some of the gift money that I’ve received. I went on two rather short rides on Sunday and woke up Monday sore and exhausted. It looks like I’ve got a bit of work cut out for me, though it’s something I was told to expect. Regardless, since I can’t drive, it’s a nice way to be able to get around and not feel so trapped at my loft. I hope to use it a lot!

For now, that’s all I’ve really got. I’ll let you know more once the appointments come along. Until then, love you.

Casey

I can’t even believe it! My last day of radiation. Something that felt like years away just a few weeks ago has happened in what seems like minutes. And being tired, being scared, feeling anxious… it’s all brought me to today when I suddenly feel a bit of pride for this rather intense accomplishment. And it’s something I couldn’t have done without all of you supporting me.

The day started with us coming back from our fourth time in San Antonio… something that’s feeling rather normal lately. As always, it was great to see Jan & Jim, relax in the tub, eat amazing food, etc. And before that we were lucky enough to see more family — Kevin, Lucy, Meg, Dominic, Mary and Tessa. We even shopped in Tessa’s newly established candy store. Jill and I had decided to spend the weekend (most of it) in Austin. It was filled with good food and a few chances to listen to great live music, along with ample time for me to relax and pick up much-needed energy. I’m still struggling with that.

Once we made it to Houston this morning we went straight to the Proton Center. And as soon as we walked in the door there were some knots in my stomach. I thought immediately about how this was my last day. As much as that was reason to celebrate, it also made me sad. A lot of the day-to-day people here had become great friends over the past six weeks. Deborah at the front desk knew me from day one and never let me leave without wishing me a great afternoon and telling me how she was excited to see me the next day. Megan, Claudia and Carolyn, the technicians that ran my machine, were becoming friends. They shared great restaurants and entertainment to check out while I was here, they made it feel comfortable to be there everyday. I now had to say goodbye. I started swallowing back my wanting to tear up.

Jill and I went downstairs to the waiting area for about 20 minutes before I was called back. I was masked, locked to the table, and the machine started. I went through the usual routine, but thought the whole time about how this was the last. And when the machine was done, I just stared at the ceiling and felt a flood of emotions. But I knew I needed to go home. I smiled a bit.

Part of the tradition at the Proton Center is ringing a gong on your last day. The girls came in when treatment finished, excited to announce that it was complete. They released my mask and brought me out the the gong. I handed them my camera. We brought Jill back to watch. I rang the gong (see the picture). And the whole time I was fighting back crying until someone said “Congratulations… It’s been so great getting to know you.” And then I just starting bawling. The little crying kid in me took over, as it sometimes does. But it felt good. I hugged them all, thanked them for what they’d done for me over the last six weeks, and finally got to walk out the door with Jill.

We headed for lunch. We ran errands. And then we started a wonderful day together. Massages, followed by an amazing dinner at an incredible restaurant with the best sister in the world. And every once in a while it would pop into my head again about how hard it was going to be to leave. I’ve gotten used to it down here. Having loved ones with me, going through treatment, knowing that it was the only way to get better.

But I’ve gotten better. So it’s time to go home. And I can’t wait to see you all.

There’s a quote etched into the marble plaque in front of the fountain I saw everyday before radiation. I find it incredibly inspiring and thought I’d share it.

“Go confidently in the direction of your dreams. Live the life you have imagined.” — Henry David Thoreau

Only one week to go! The two weeks that Aaron was here felt more like one. Now he’s back in Minneapolis and Jill is here for my last 10 days. In about a 12 hour period over the weekend I went through the excitement of getting to see Jill and the sadness of saying goodbye to Aaron. But it helps to know I’m about a week away from getting back home.

The last week was much more tiring than it had been in the past. My focus and memory seem to be dropping a bit, as well as my energy. I forget names and nouns, especially in my short-term memory. I had already been warned at these, but like the hair loss warning, I think I was first hoping to prove them wrong. Instead, they were rather accurate. In speaking with my doctors, I’ve been told they’re very normal symptoms and that they’ll return to normal when radiation is complete and I have a few weeks to recover. So for now, I’m trying to focus on passing the time with Jill, havng fun, watching movies, eating good food, and relaxing.

Jill’s first objective when she arrived was to trim my remaining hair. It hadn’t been cut since a couple days before my surgery… Febuary 11th! So I think she may have gasped a little when she saw 1/3 of my head bald, and the other 2/3 incredibly overgrown. She’s got me looking a lot better.

The end of Week 5 came with a great visit from Cory. He was passing through Houston on his way back from Costa Rica. He was so thoughtful that he changed a flight to stay longer in Houston, rented a car to drive to the hotel and meet up with Jill and I. We had a few hours of great catch-up time and some lunch at my favorite little taco place… Taco Milagro. It was a great to see him.

Jill and I will be spending my last weekend in Austin. She’s got lots of little things for us to do, and I can’t wait. It will be one last weekend getaway before my last day of radiation on Monday, and my flight home on Tuesday.

Before I close, I just wanted to send out a special thank you to Linda Quinn and her entire family. You’re amazing people and I hear that you’re reading the site. I figured this would be the best way to say it. Thank you, thank you, thank you.

To Aaron, thanks for helping me through the last two weeks. It means a lot that you would come down to look after me.

To everyone, thanks for the continued support.

Love you all.

That’s the Alamo in the background of the photo. It’s a bit difficult to see, but I like the photo as it’s a good reminder of the great time I had this weekend with Aaron and two of my cousins – Meg and Tony.

Tony flew down on Saturday from Omaha. Aaron and I picked him up at the airport that morning and headed straight to San Antonio from there. We spent the day in the pool and hot tub at Jan & Jim’s house, which we had all to ourselves as they were off golfing and gambling in Nevada. That night we headed into downtown for some entertainment and great food, both of which are incredibly easy to find at the Riverwalk. The weather was beautiful, the scenery was incredible, and the company I was with were perfect in reminding me of the best parts of life.

When we returned to Jan & Jim’s we spent a couple of hours in the hot tub before heading to bed. The next day started in a similar way — hours in the hot tub and pool. Later that afternoon we headed north to Austin where we were invited to join the Furey family for a tasty burger dinner at a little outdoor diner. I hadn’t seen them in years. I miss them! We were only in Austin for dinner but I will be returning in two weeks with my sister for a bit more time.

I had to say goodbye to the Furey’s, including Meg, which wasn’t easy. And then it was time to return to San Antonio where Jan & Jim had arrived home from their getaway. It was also time for dinner number two, which was steak and lobster, and incredibly tasty. Tony, Aaron and I helped Jan & Jim prepare it all, but only after the five of us made a quick stop at Dutch’s — a hole-in-the-wall bar that is something only the Pille family knows much about. It was a treat. Dinner was filled with great food and conversation, and ended some time around 10:30. It led to another night in the hot tub. The hours quickly passed and suddenly we found ourselves waking up to head back to Houston once again. It was a little more difficult to leave this time. I knew I wouldn’t probably get to head back to San Antonio again while I’m here for radiation. I smiled when I first thought of it as I realized the radiation will end soon, but then I also teared up a but realizing how lucky I’ve been to be so close to these amazing family members that I’ve never been able to see this much before. So Jan and Jim – THANK YOU for providing an amazing escape. I love you.

Today brought in the last day of Week 4. It was a routine day of radiation. Tonight brought Aaron, Tony and I to an Astros game. It was filled with hot dogs, pretzels, random crazy people, and great company. I felt incredibly lucky to be there. And we had a fantastic time.

For now, I’m off to bed. It’s a bit late and I’m a lot tired. :)

Love you.

The third week is complete. And that means I’m halfway done with radiation. I can’t believe how quickly the time has gone by. I’m super grateful for that. Initially I thought six weeks was an eternity. Now I know it’s not all that bad.

The three week mark also meant the end of Mom’s stay with me. She was great to have along, and despite being stuck in a city we knew nothing about, we ended up finding good entertainment and tasty food, which made the time go rather quickly. So I owe her a lot of gratitude. Thanks Mom!!

Mom and I flew home together on Saturday morning. She drove home and I got to stay overnight in my loft for one whole night. :) On Sunday I returned to Houston, this time with Aaron. We flew down together that night. I missed him a lot, as I hadn’t seen him in such a long time. It was nice to have him join me! Now it’s our turn to find new places to try, new things to pass the time. I’m rather confident that it will be just as easy.

Aaron was also the lucky one to witness my hair falling out. The area closest to my tumor (right above my ear and forward) quickly came loose over the weekend and I’m now entirely bald in that region. It was all too reminiscent of when I lost my hair on chemotherapy, though it wasn’t as difficult as I thought it might be. Now I just have to think good thoughts that it grows back when this is all said and done!

I had appointments today with a neurologist to discuss the partial seizures I had a week or so ago, as well as to have an EEG to study my brain activity to see if it gives any hints at what might have caused them. Those results aren’t back yet, but in my conversation with the doctor it seems we’ll be monitoring the coming weeks with me on the higher dose of my medication, hoping that controls everything. We also discussed my memory and fatigue levels. It’s not uncommon for there to be issues with these things starting about halfway through treatment (which is where I’m at) and he informed me that if they do come about, that they’re only temporary and will recover 100%. This was very comforting to learn. Though my memory is/was never perfect, I’m happy to hear that if it becomes worse as a result of this treatment, that it will go away.

I guess that’s it for now. Will keep you posted on progress. Love you all!

The picture above is me, today, locked to the table just after finishing Day 10 of radiation. It’s part of the daily process, but today marked another week down. I’m now 1/3 complete.

After our return from San Antonio last Monday it felt like the week might go slowly. A fun weekend turned back to the weekly cycle. But suddenly it was moving along. On Wednesday, Mom and I were off to see the musical Wicked. It was a great show, and an incredibly thoughtful and entertaining break, courtesy of some of Mom’s coworkers. (Thank you!)

Thursday passed by and once again it was Friday, and time to leave for weekend #2 in San Antonio. We were excited to get out of Houston again, although I experienced a couple partial seizures on Friday which made it somewhat frustrating. The seizures were very similar to those I have experienced before, and I knew that they were a possibility. Still, it’s no fun to experience them… especially so many in such a short time.

Regardless – we arrived in San Antonio for another relaxing weekend. Once again, it was filled with great food, great company, and a great hot tub & pool to relax in and forget about the medical world for a while. On Sunday we spent about 4 hours lounging around in the pool (me with layers upon layers of sunscreen and a hat on) before making dinner. All the while, our new friend Arnie Palmer kept us company. Dinner was fantastic… something Jan calls the Wok-a Wok-a… I just call it delicious.

Thank again Jan & Jim for another weekend escape!

Today I came back for my weekly radiologist appointment and was quick to voice my concerns about the partial seizures. My doctor connected with my neurologist and they have decided to raise my anti-seizure medication for the time being to see if it will help with the symptoms. So for now that’s the update. I’m hopeful that it resolves the problem. Stay tuned.

Finally, it’s Mom’s last week with me in Houston. What I thought would feel like quite a long time… living with Mom for the longest time since I left home after high-school… has actually flown by. It reminds me how lucky I am to get along so well with my family. This week we’ll be celebrating my half-way point with nice dinners, sight-seeing, and more successful trips to the proton center. On Saturday we’ll both be flying back to Minneapolis. Mom will head home, and I’ll be there overnight, returning Sunday with Aaron who’s brave enough to live in a hotel with me for the next two weeks!

Thanks for everything, Mom. I love you!

I’ve just returned from my 5th day of proton radiation, which means one entire week is complete. Only five more to go!

Earlier in the day we drove back from a great weekend in San Antonio. We left on Friday after treatment and, having survived a whole lot of rush hour traffic, arrived a few hours later at my aunt & uncles house. Just leaving the hotel to go have a little extra room was worth the drive, but to get to see Jan & Jim, as well as my cousin Meg, was the real highlight.

Friday night was pretty low key as we got there around 9pm. Saturday started with a visit to Jan & Jim’s office to take care of a few things, one of which was straightening a bar needed to continue work on the lawn. With Jim’s smarts and my amazing tractor driving skills (actually, I have no skills with the tractor) we were able to take care of the job.

After that, Jan, Mom and I went to do a little shopping. I was done after about 15 minutes so I spent 2 hours listening to the radio in Jan’s car waiting for them to finish up. By the time they returned I had successfully drained the battery. Good work, Casey. We found someone to jump the vehicle and moved on with the day.

That night, Meg met up with us for drinks. Since I’m having NA drinks right now, I introduced the group to the always tasty Arnie Palmer. It was a hit. Following that, we headed down the street and enjoyed an amazing steak dinner with the whole group. Thanks Jan & Jim!

Sunday was much the same. We ran errands, cooked a great dinner, and spent good time just hanging out with family. Meg and I spent about 2 hours in the hot tub on both Saturday and Sunday night. We had good conversation and it was really nice to catch up with her. I don’t get to see a lot of my family nearly enough, so it meant a lot to see these guys this weekend.

It was tough to leave, though at the same time good to know that I was that much farther through treatment… something that means almost as much having such great family to help me through it.

Love you!

Just got home from my first day of radiation. I knew the treatment wouldn’t take much time each day, but I was still pleasantly surprised when, after under 40 minutes, I was walking out the door with mom. And all future days will be closer to 30 minutes.

The treatment will start everyday with my head getting locked down with my fitted mask. Once I’m in place, the machine will take an x-ray to ensure that the radiation will hit the correct spots. Then I will go through three different periods of radiation, all of which are just a few minutes long. In between each, the machine rotates my body/head and the machine so that it is aimed from different directions. It’s all pretty incredible. I’m lucky it exists.

I’m happy to have this day done. It’s only 1 of 29, but it’s a good start, and it just means I’m that much closer to being finished. However, in the meantime, mom and I are figuring out things to keep us busy during the days, considering only 30 minutes of it will be treatment. I’ll be starting part-time work for Target again. We’ll visit museums. We’ll go shopping. We’ll watch movies. And once we’re into the grind, time will go much more quickly.

Finally… just wanted to let you know that I have a mailing address now, and have put it on the Contact Info page in case you need it.

Bye for now.

Love you.

Today was a bit of a zoo. It was a frenzy of appointments, waiting for more appointments, meeting new doctors, genetics specialists, and nurses. But it’s finally done, and we finally have a game plan.

I first met with Dr. Slopis, who is a neurologist. He gave yet another exam on hearing, vision, etc., then walked me through my MRIs to discuss areas of concern, and how surgery and radiation could affect those areas. He also questioned me on any symptoms that I’ve been having. We discussed my seizures, my memory loss and other possible issues and how they work in the brain, and how the Trilepol that I’m currently taking is largely controlling those.

Next was a radiologist whose name I’m currently blanking on. She was there to help me understand the pros and cons of radiation… proton beam radiation vs. standard radiation. Proton beam radiation is much more precise in the area it radiates. This is generally a good thing, but in my case the edges of the tumor aren’t well defined so it may be hard to perfectly map the radiated zone. Still, she recommends proton vs. standard in my case. It’s much safer, especially considering the likelihood of me having Li-Fraumeni.

In between appointments we were greeted by a genetics nurse who asked us if we were willing to take part in a large study on my history. I’m not sure how much of the details I can give on it are, so I’ll just say it seems rather extensive, and I look forward to receiving some of the details on it in the future.

Finally, we met with Dr. Wolff for my exit meeting. While mom and I had lunch he met with this team of doctors I had been seeing for the previous three days. They discussed their varying opinions and came to a common ground on their recommended approach to treatment. Just hearing those words gave me a bit of comfort, even though any of the options is scary to me.

The best approach, from Dr. Wolff speaking on behalf of the entire team, is to start with surgery in the very near future to remove some of the bulk of the tumor. Prior to that I will have an MRI mapping done to monitor where my speech and motor skills come from in my brain to help the surgeon make more precise judgments on where to cut. I will be awake during the surgery and will be asked to speak and move various parts of my body so they can monitor me for any motor/speech loss. And if everything goes well, I could be in the hospital for as few as 3-4 days.

A few weeks after surgery, I will begin radiation therapy. This will be a six week process, with me living in Houston for daily therapy Monday-Friday.

Depending on the pathology reports from the removed tumor, they may also start me on a chemotherapy program. Should the tumor be a more advance grade than what is currently thought, an oral chemo plan would be added to the mix. It sounds like this is something I would just do at home.

It’s a lot to take in, and we haven’t scheduled the surgery yet. I needed the time to talk through this with my family. But I already know in my heart that it’s the only option. And so on Monday I’ll begin that process.

For now, I’m going to spend a few weeks living life to the fullest, seeing as many of you as I can, and thanking you all for the wonderful comments you’ve left, the amazing emails you’ve sent, and the inspiring conversations we’ve had.

Much love.