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 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

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

I returned from Houston last night after a two-day trip for essentially one appointment at M.D. Anderson. As you may remember from my last visit, they recommended a PET CT scan for a better look at the area of concern in my brain. After speaking to the team in Minneapolis who doesn’t do these types of scans, I decided to fly back down for the test. And I’m so glad I did.

As a little bit of background, the PET CT started with an injection of a radioactive material, followed by resting for about an hour in a protected cube while that material spread through my body/brain. I was then brought to the scan which looked a lot like a CT (with the large whirling machine spinning around me) combined with an MRI (a long tube that I passed through). However, I learned that unlike a regular CT or MRI which measures actual mass and size of the tumor, a PET CT measures glucose levels in the tumor. Dr. Wolff explained that a growing tumor would have very high glucose levels, and that any area of my brain with such levels would show up bright on the scan.

My scan started around 9:00am and including the resting time, I was done around noon. When I first arrived for my 1:00 visit, the scan had just started to be posted to the system that Dr. Wolff accesses, so the film he pulled up didn’t show much of anything. In looking at the “results” I remember thinking “I flew all the way down here for this???” So we decided I should come back in a few hours once he had access to the full results and reading from the radiologist. So I went back to the hotel and took a nap.

When I returned it wasn’t more than a few minutes before Dr. Wolff arrived with a grin on his face, and I knew what that meant. He brought up the results on the computer and I could immediately see the good news too. There was nothing seemingly close to bright in the areas surrounding my tumor. Of course, my mind was filled with questions.

“Does this mean it’s slow growing?”

“Does this mean it’s small?”

“Does this…”

Dr. Wolff was very quick to interrupt. “Just enjoy that bit of news,” he told me. So we paused for a bit before I forced myself to ask the questions. :)

As it turns out, the news IS largely good. There are no signs of fast growth of a tumor in my brain. But these results conflict with those from earlier this spring with the MRI, so it will mean continued closely-watched results from future scans. I’ll be back in Houston in August/September for my next visit and we’ll go forward from there.

I left the appointment, following Dr. Wolff talking to another doctor about how rare it is that he gets to give good news.

After the appointment, I went back to my hotel and made a few calls to share the great news. And when those were done I just had to get out of that room and clear my mind. It’s the hardest thing to explain, but after weeks of prepping myself for the worst, it was hard to accept/understand the good news. After a couple hours of “Up” in 3D (I recommend you see it), my head was a lot clearer and I went to celebrate with Mission Burrito and Amy’s Ice Cream. It seems to bring me good luck. :)

The picture above is from the previous weekend when I visited with some friends in Chicago. These are the friends that have been with me since the first days of this cancer mess, back in high school. It was great to see them.

Hope you’re all well!

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!

I just returned from another trip to Houston. I arrived Wednesday night at midnight to the steamiest, nastiest humidity to date, and stayed through what turned out to be some incredibly beautiful weather before leaving on Saturday. It was partly a routine visit — the usual MRI and neuro-oncologist visit — but also had some more extensive testing with cognitive doctors and my surgeon.

Thursday morning, after about three hours of sleep, I was up at 5:00 and preparing for the day’s appointments. By 6:30 I was in the MRI and quickly fell asleep despite the constant hammering of the machine. I was exhausted, and wished it would have lasted more than 30 minutes!

Once it was finished, I went to give some blood for various tests, and then had some free time to grab some breakfast. Later that morning I went to meet with my surgeon, Dr. Weinberg. It was great to see him walk through the door and immediately inform me that there weren’t noticeable changes on the MRI. As always, this is as good as the news can be. No changes, no growth, nothing to be concerned with. He walked me through the areas where the tumor wasn’t removable and was instead radiated and explained what they’re watching for. It was a chance to breathe easy.

That afternoon I had mostly free, and I went home and took a four hour nap… finally able to catch up on the sleep I didn’t get the night before. That evening I grabbed dinner, stopped for some Amy’s Ice Cream (the BEST!), and went to see Michael Clayton. It was a fantastic movie, and I highly recommend it. I also made it to bed a little earlier than the previous night.

Friday started at 9:30 with an appointment with the cognitive team. These are always lengthy meetings, starting with good conversation about any struggles I’m having, and leading into the actual testing… memory tests of various forms. We discussed work issues, stress level, memory loss, and how those things affect me. It’s great to have someone who knows exactly what I’m going through, instead of having to convince them. That was actually the key of the discussion… I’m starting to look and act normal, but I still have big memory and energy loss issues. The appointment left me feeling stronger, and the doctor is going to supply me with some recommended therapists that I can speak with in Minneapolis regarding tips to work with these issues and how to avoid letting stress build.

While waiting for my last appointment of the day, which was in pediatrics, I met a woman whose daughter (a shy 14 year old) has osteosarcoma. A nurse had just stepped out to let her know that the daughter’s blood count was high enough to go out in the public and go shopping. They knew it was something to celebrate. They’re from Hawaii and are going to be in Houston for a couple months. I congratulated both of them and we got into a conversation about our experiences. I told them that I had fought osteosarcoma three times, had lost my leg, and some of the other stuff I’d been through. We discussed how amazing M.D. Anderson is, and that it’s the best place for her and her daughter to be. It suddenly dawned on me that she might be seeing Dr. Anderson, my old doctor. And just as I mentioned it, he came through the doors to speak with them and saw me there. He introduced me to some new doctors as the longest living patient from high-level samarium treatment, and even used the word hero. I let it go straight to my head… I was feeling rather proud. And the mom joined in and congratulated me. I congratulated her and her daughter again. They’ve got amazing strength and I can’t wait to see her win.

Dr. Anderson invited me to an annual ski trip for survivors with disabilities. It’s in January, and I plan on taking him up on the offer. What an incredible opportunity to meet up with people who’ve gone through similar experiences and share what we’ve accomplished.

I said goodbye to Dr. Anderson and asked to exchange info with the mom and daughter. They’ve invited me to meet up with them in Hawaii sometime and I hope I get to take them up on it. I wish them the absolute best.

My last major appointment of the day was with Dr. Slopis, who has quickly become one of my favorites. I’ve always felt incredibly comfortable talking to him about anything I’m dealing with, be it stress, anxiety, moodiness, and other concerns. He reaffirmed Dr. Weinberg’s opinion that my scan looks no different and that it is reason to celebrate. We spent some time talking about various concerns and he provided answers.

After the appointment, I had the rest of the day to get out and enjoy the beautiful sunny day. It was the perfect end to a great check-up in Houston. I’m still waiting to hear when I need to return… either December or February. And I’ll also need to start planning my annual checkups for bone scans and a colonoscopy. Those will happen in Minneapolis in the next couple months. I’ll keep you posted!

Hope you’re all well. Love you

Sorry for keeping you all in the dark the last few weeks. It’s easy to fall back into normal life. That’s not necessarily a bad thing, but I want to keep you up to speed on the latest news.

I flew to Houston on Thursday night feeling a bit weird, as it was the first time I’ve been to Houston by myself, even after four months of treatment. I was generally confident that the news would be good, but couldn’t avoid an occassional “what if”. I had little time to think about it once I arrived, as it was sometime around 9:00pm in an insanely hot and humid (instantly wet) Houston. By the time I rented a car, drove to the good ol’ SpringHill Suites I’ve come to know so well, and got things ready for Friday’s long list of appointments, it was time to crash.

Friday morning started early and was scheduled to be a long day of appointments. It started at 7:30am with some blood work and moved quickly on to an MRI prep and scan. There is always a bit of a wait, and Friday was like any other. I changed into my scrubs and went to the waiting area to see the group of others in line for a scan. I caught eyes with a woman, Patsy from northern Mississippi, who immediately asked me in her southern voice, “How you doin’ sweetheart?” And we hit it off. We chatted for a while and before she left she scribbled her and her husband’s names and phone number down on a napkin and insisted that I call the next time I was down, telling me she’d come and meet me for lunch to chat some more.

Eventually I was called into my MRI by a woman named Anita who also goes by any other name you’d like to call her (or so she says). When the scan was ended she noted that someone had found my key in the waiting area, “Along with a note from Mrs. Robinson” — clearly I had forgotten my locker key, as well as the scribbled number from Patsy. We shared a couple laughs while I was putting my leg on, and when I reached the point where I needed to lock it in with a coin or some sort, I was digging through my pocket for a quarter. At the same time, she pulled out a gold coin with an angel on it. She told me how she brought it into work and uses it to wish people well, and that she wanted me to have it, to take the coin and keep it close. I smiled, took the coin, and told her I would do just that.

I moved on to my appointments with Dr. Slopis and Dr. Wolff. The first things out of both of their mouths were that the scan “looks the same”. It was the damn best news I could have asked for.

I spoke a lot with both of them about recent symptoms. I only have little hints at the seizures and haven’t had an actual one in quite some time. But recently I’ve been having bloody noses, a rash under my prosthetic, stress/mood, among others. And while they aren’t directly related, I wondered if they might be tied to the medication. So we discussed. They’re things I’ll just have to monitor and treat individually for now, and see local doctors in Minneapolis if things don’t heal, worsen, etc. They were all minimal and fell in the shadow of the good news… no signs of growth in the space that was once a tumor. Fantastic!

We quickly reviewed my next steps — another visit in late October — and I was on my way. On the way out, I saw Anita. She asked “what are you still doing around here??” I thanked her for the coin and told her the luck it had already brought me. I headed to my car. I needed to celebrate!

That night I was so lucky to have the chance to meet with an old coworker Todd and his wife Karen (pictured above). Todd and I worked together at my last job, and while I was there I learned that Todd has been fighting osteosarcoma… the same bone cancer I had in my hip, jaw and removed leg. Over the last few months I’ve learned of the recent treatments Todd has been going through in his amazing fight, and that he too ended up in Houston. He has been seeing Dr. Anderson, or Dr. Pete as he and Karen call him, who connected with Todd upon hearing of his fight, eventually suggesting they go to M.D. Anderson for advise. Such a small world. Todd was finishing a round of radiation on Friday, so we happened to both be in Houston.

We went out for dinner at a tasty little restaurant and had an evening filled with great conversation, sharing the good and the bad from all that we’ve gone through. Todd is an inspiration to me in my fight. And as he continues his treatments, I’ll be sending positive thoughts to him and Karen. Please be sure to do the same. If you’d like to read more about Todd, check out:

http://www.caringbridge.org/visit/toddandrews

I left Houston bright and early Saturday morning for Michigan, ready for a fun-filled weekend with Aaron and his family. It was a fantastic time filled with sun, outdoor adventures, tandem bike rides, fudge, and much more. Exactly the right way to end the summer. Give me a shout if you’d like to hear all about it! For now, I’m off. Talk to you all soon. Much love.

Casey

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.

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.

We arrived in Houston yesterday afternoon. The city was in crisis mode, as the weather was in the 30s, which is just not acceptable to Texans. There were ice warnings galore, and non-stop news breaks with more and more warnings of impending doom. I got a kick out of it.

Anyway, just a few blocks before our hotel we passed MD Anderson, and I was immediately amazed by the size of the place. The cancer center alone is larger than the entire clinic I’ve been treated at in Minneapolis. The grounds are beautiful.

Today we woke up for my registration. It was supposed to begin at 8:00, but as I said, we were under ice storm warnings, so entire departments didn’t make it into work right away… including the business center that needed to register me. :) After waiting a bit, we got set up in the computer and I was soon greeted by Dr. Wolff. And after only a few minutes of talking to him I felt certain that I was in the right place. He asked me to walk him through my history. I told him about the colon cancer, the osteosarcoma in my hip, the return of the osteosarcoma in my heel, the amputation, more osteosarcoma in my jaw, the skin cancer on my neck, and now the cancer in my brain. With each passing chapter he was reactive, and I think he was in some ways shocked. He made comments along the way, we laughed at some of the things I had gone through. But all the while, I could almost see his brain chugging through all of this, thinking of ideas and ways to move forward.

When the interview portion was done I was given a physical. Just routine stuff, with additional questions along the way… about my curved spine, about my scars, about any possible new side effects I had as a result of the tumor in regards to hearing, sight, etc.

He then went through his thoughts on treatment options and best next steps. And he started by confirming that he, at least initially, believes it is smartest for me to just continue having MRIs to monitor for growth of the tumor. But he helped me to better understand why.

The size and location of my tumor don’t allow for a simple surgery. The fact that it’s in my brain alone means very high risks. I could end up paralyzed, even with successful removal of the tumor. He discussed how larger centers like MD Anderson have more expert surgeons that aren’t just “brain surgeons” but even more specific to parts of the brain, or tumor-specific specialists. They’re just that much more detailed in their area of focus. This made me realize how important it is to go to a major center if I have to have surgery.

He also discussed radiation treatment and how important it is to minimize risk of affecting other areas of my head/brain by finding the most precise treatment possible. If I truly have a genetic defect (and Dr. Wolff feels I do), then it’s even more important that the radiation spread as little as possible beyond the tumor, to minimize the risk of this just causing additional tumors. He discussed the different types of gamma radiation that exist for cancer treatment. Most commonly, the treatment uses photon rays. MD Anderson, and only two other clinics in the United States (in Boston and California) offer a newer form of treatment that uses proton rays. And again I right away felt like I was in the right place, and should I need to have radiation, I would choose to do it at MD Anderson.

We quickly covered chemotherapy. Dr. Wolff feels that given my previous experience with chemotherapy, and the awful side effects I had, that it wouldn’t be high on the list of treatment recommendations.

This all made me further question why I wouldn’t immediately go through treatment to remove the tumor. So I questioned Dr. Wolff. And he reminded me of the fact that I have such a high quality of life right now. I’m able to work, I have very few side effects of the tumor… no physical ones, and only minor seizures now that I’m on medication. And that having surgery or radiation would rob me of that quality of life. And beyond that, it would raise the risks of the major side effects that could come along with it, especially surgery. I could end up with sever motor skill problems, or even be paralyzed. So why take the risks when there are no side effects that demand it? It started to all make sense.

He suggested a few additional appointments that I have while I’m here, including some tests like blood work and an MRI of my spine to confirm that there’s no related issues there. I’ll also likely be meeting with a radiologist to discuss treatment options further. More to come on that.