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

Casey and Dad before 11/04/09 biopsy.

Dad and I made it to Houston safely yesterday and spent the day in appointments to prepare for tomorrow’s surgery/biopsy. I met first thing with Dr. Weinberg. The first step was to get a new set of lifesavers on my head (see above). It was a bit of deja vu having them added again. And I’m wishing I had them on for Halloween as it seems like everyone loves to sit and stare! Anyway, we reviewed the risks of surgery, and I got more information on how they would approach the tumor from the top of my head to ensure the safest route possible. It sounds like there will be about 1 1/2 inches of incision. Once they open that they will remove a portion of my skull (a small hole) to allow room for the needle.  The needle will be tunneled through to carefully avoid an artery on the outside of tumor, and an area that controls critical muscle function on the inside. Obviously it’s not without risks, but Dr. Weinberg is saying there’s only about a 5% risk of severe side effects. We finished the appointment with me signing off on those risks and moving on to anesthesia prep. I’ve been put to sleep so many times for surgery that it seems I’m a bit of an expert. After that we had a bit of time to go grab lunch and hang out at the pool.

It’s now 7:00pm the night before the surgery and I’m back at M.D. Anderson for my last appointment… an MRI of my brain with the lifesavers on my head. This MRI will be part of the map they’ll use for the surgery itself. The building is almost empty right now, but we’re still having tests… 8:00am to 8:30pm. And tomorrow starts EARLY. I’m scheduled for surgery at 5:15am!!

According to Dr. Weinberg, I will be staying at 23-hour watch, so I’ll be in the hospital until Thursday (they don’t know if it will be ICU or regular room until after surgery). Assuming I’m not having any side effects from the surgery, I’ll be able to get out on Thursday, and then we’ll be returning for appointments on Friday to discuss results.

SOooo — a busy night and an early morning. I’ll keep you posted after surgery if/when I can, and will let you know the results once I hear them!

Mission burrito wishes and Amy’s ice cream dreams. 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

Just wanted to post a quick update to let you all know that I finally have plans set for my visit to Houston. Dad will be joining me this time. We’ll be heading down on Sunday the 18th, with appointments starting on Monday the 19th. I’ll be starting with standard blood work and moving on to an MRI. Following that MRI, I’ll be having a different form of magnetic resonance testing known as MR Spectroscopy.

Huh?

I looked it up and read that it is “used to detect the concentration of specific metabolites in a particular region of a tumor”.

Huh?

For now I’ll take it as another way of collecting information on the tumors. I’ll let you know when I understand it in full.

Tuesday is the crazy day. I start with PET CT prep at 7:00am and will be there for three hours. From there I go straight to Dr. Slopis to discuss my seizures. Dr. Wolff will join us to discuss the situation as a whole, with results from the MRI, MRS, and PET CT obviously being the focus. We’re hoping that this delivers good news, or at the very least a better understanding of what’s going on. And finally, we’ll meet with Dr. Weinberg (my original surgeon) to discuss if I’ll need a biopsy. If that biopsy happens, it will be on Thursday and I’ll be home on Friday. If not, I’ll return home on Wednesday.

Since there are so many questions that are up in the air (is it cancer? if so, what treatments? if not, what treatments), there will be a lot of important conversations taking place to move things forward.

I’ll be sure to pass along that information once I’ve got the results. Thanks to all of you for such amazing support. My family and I are continually wowed by how many kind words of support we see.

Take care, and talk to you soon. For now, I’m off to see Jill, Ben & Ruby. I’m going to be an uncle in a few months and need to bring out my first bunch of gifts. :)

I have an update on the current plan for treatment that I wanted to share with you all. I received a call from Dr. Weinberg, my surgeon at M.D. Anderson who removed my original brain tumor. He was on vacation last week, so we weren’t able to connect with him when I was in Houston. He connected with Dr. Wolff & Dr. Slopis this week to discuss the current state of my scans, and had the following to share…

In regards to the PET CT, he updated me that the final read from the radiologist noted that one of the two spots did actually show up, but very slightly. He reminded me that generally speaking, if this were a tumor, especially a high-grade tumor, these spots should show up more than they currently do. He said that because the intensity is less than expected, it could be more in line with necrosis rather than cancer.

In regards to the biopsy, he does NOT recommend a biopsy in the next week or so. After reviewing the MRI and the position and size of the two spots, the team feels it might be too risky to perform a biopsy yet. The tumors are already located in a sensitive area of my brain (remember, it was not removed during my original surgery because I would likely have had some combination of paralysis, memory loss, etc.), but these two spots are also very close to critical blood vessels and nerves. Targeting them with a needle biopsy runs major risks. If the nerves or vessels were hit while trying to perform the biopsy, I would run similar risks of stroke or paralysis of the right side of my body. So while the biopsy serves to make our next decisions for treatment, having such a small target and serious risks makes him suggest we wait several weeks to see how the tumor changes.

Because of this, I will not go back next week. Instead, we’ll be working on appointments for about five weeks from now. At that time we may see growth in the tumor, but Dr. Weinberg says this would actually be a good thing in this case, as it would give him more working room for a less-risky biopsy if they decide to perform one. Further, if that decision is made, they’ll be able to perform one while I’m down there that week so I don’t have to fly down yet again.

Finally, it’s rather easy to keep thinking of this thing as a tumor, so I asked him what the hell this “necrosis” thing really is. His response: “Casey, I’m going to give you Dr. Weinberg’s Philosophy on Necrosis.”

He described how post-radiation brain tissue can die, causing inflammation of that area. The inflammation then irritates more area and can cause death of additional tissue, which in turn causes more inflammation, more irritation, tissue death, etc., etc., slowly growing as this happens. In a lot of ways it’s similar to a tumor, which is probably the best explanation of why it’s so similar on my MRI. Obviously, I’m a believer in his philosophy.

In short, things are on hold for a few weeks while we wait for these spots to grow or change. I’ll be heading down to Houston in 5 weeks, and based on those scans we’ll decide if a biopsy is safe. If so, I’ll have it that week. If not, we’ll revise plans accordingly. Obviously it’s a bit strange to me, sitting around for these things to grow. But it also makes sense and is far less risky, so that’s what I’ll do.

Thanks to all of you for your amazing support. I’ve been absolutely blown away by the comments, encouragement, prayers, and well-wishes. One thing is certain… I’ve been through this before and it’s things like those that keep me strong and will continue to do just the same. Thank you.

I just returned from my 3-month visit to Houston. I was scheduled for the standard blood work, MRI and visits with my two main doctors (Wolff and Slopis), along with some additional meetings for Li Fraumeni syndrome. The tests were all scheduled for Thursday, so I flew down on Wednesday afternoon to a ridiculously humid Houston. Thursday was like clockwork. I started with blood work at 7:00am, followed by my MRI. I left the center by mid-afternoon. That night I got to meet up with Mark, another survivor who Jill and I met on the M.D. Anderson ski trips. As you can see, he shares my enjoyment of Amy’s Ice Cream.

Given the results of the last tests (MRI & PET CT in June) I wasn’t all that nervous about the results of this round. I went in Friday morning for my 9:30 appointment with Dr. Wolff and found myself waiting for an unusually long time. It felt a bit like the old days at Mayo Clinic waiting for hours and hours to see the team. When Dr. Wolff finally came in he went straight to business and I immediately had the feeling something wasn’t right.

He pulled up my MRI and before he said a word I noticed a very bright spot on one of the layers of the scan. He quickly looked through some of the different views (front to back, top to bottom) and each time he reached the area where I had radiation I would see a couple spots. He still hadn’t said anything.

He started pointing these spots out, and after looking through the scans he went to read the radiologist’s briefing. He read it out loud, translating some of the medical speak as he moved through it. The short of it was that there are two spots, very close to the removed tumor, and both in the area that was radiated. The radiologist had noted that these spots seem like they might be a reaction to the radiation, and not necessarily a tumor. Doctor Wolff felt, however, that these types of side effects happen within the first several months after completion of radiation, and I am now over 2 1/2 years out.

I listened as though it was someone else he was describing… not yet reacting to what was being shown.

We compared this MRI to the one taken in June. One of the spots had been marked by the radiologist at that time as something of no concern. You could barely see it. In the new scan it should up very vividly, was much larger, and accompanied by an entirely new spot.

We also discussed recent seizures I have been having. They’ve been much more intense in the last month or two, and he explained that this would also serve as a sign of growth in that specific area of my brian.

I suddenly started to react and felt my throat tightening as Dr. Wolff started explaining some of the treatment options. He was mentioning chemo drugs, and new studies that are only available at M.D. Anderson, and the possibility of a biopsy. It all went in one ear and out the other and I just focused on not crying. When he finally asked what I would like to do next, all I could do was grab the phone out of my pocket, show it to hime and say “I need a call”. I immediately started crying and went off to call Dad to explain the development. Mom arrived home shortly after and we were all in disbelief.

Before we could move any further we needed that confirmation, and the quickest way to get it was through additional tests. I went back to Dr. Wolff’s office to get an order for a PET CT, as he was hoping to get another type of view and an opportunity to confirm these spots as tumor. I immediately went over to another building and began the long wait for the PET CT. I literally had just eaten a bag of peanuts I had in my bag from my flight the other day (15 peanuts total, maybe?). Dr. Slopis had asked if I had lunch yet and threw some crackers my way. When I reached the PET CT center I found out that you can’t have ANYTHING for 6 hours before the test. So I waited, and waited, and waited until I finally was called for the scan… literally the last person in that area of the building by the time the scan was completed around 7:00pm.

Dr. Wolff’s nurse told me to meet up with Dr. Wolff in the hospital as soon as possible after the scan. He waited on a Friday night until 7:00 to give me his quick read on the PET CT. Wow!

The scan didn’t confirm anything. It was a bit of good news, but certainly no guarantee. It only told us that the PET didn’t read what the MRI was showing. Without the confirmation, it left us with only one other option… a biopsy.

When I finally left the hospital, I couldn’t do anything but go get Mission & Amy’s. As some of you know, it’s my top pick in Houston for stress reduction. And it seemed to work a bit.

So here’s where the visit left me:  still unsure of whether these are tumors or just a side effect of radiation, and because of that, unsure of next steps in treatment. Whether its a tumor or not, I will be going through some level of treatment since it seems to be increasing my seizure levels and is growing in an area of my brain where we certainly don’t want it.

I’ll be working on Monday to figure out timing with Dr. Wolff and Dr. Weinberg (my brain surgeon) on when we can do a biopsy. I’ll be setting up flights accordingly and will be sure to keep you up to speed on when that happens.

In the meantime, think good thoughts. I hope you’re all doing well.

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!

Last week I had another one of those MRIs that snuck up on me with my doctor in Minneapolis. I’ve been so busy with work that I haven’t spent much time really even thinking about anything else. So when I got the call the night before to pre-register for the appointments it took me slightly by surprise.

It was just the standard MRI/doctor checkup that I’ve been having every 2 or 3 months since radiation. And I was assuming it would go just like the rest of them — ending with good news. This one didn’t quite go that way.

A month or so before the appointment I had spoken with the team in Minneapolis about the October/January appointments in Houston, letting them know that in October the team at M.D. Anderson thought there might be some hot spots on the scan but that January didn’t show anything. And I requested that those scans be sent from Houston to Minneapolis for comparison during this appointment.

I went in for my scan and then headed to the doctor’s office later in the afternoon. Generally, Dr. Truscheim opens the door and immediately says something like “everything’s great” or “it looks fine”. But this time he greeted me while heading to the computer to pull up the MRI and immediately started talking about the scan of the tumor — that is, the part of the original tumor that couldn’t be removed and was instead radiated. He pulled up that day’s scan, along with scans from last June, and started pointing to certain areas where he and the radiologist are “without much room for doubt” seeing an increase in the size of the remaining tumor. And as we went through different layers of the MRI, there were spots were I could see growth as well.

While walking me through these he was very quick to note how “very, very slow” the growth was and that for now we should just continue monitoring. I was trying to listen, but couldn’t help but think of the “what’s next?”

We discussed my P53 genetic disorder and how that limits the safety and effectiveness of certain treatments, and how jumping into chemotherapy or radiation run way too much risk at this point. After I asked him about surgery to remove it, he reminded me of the reason that area had to be left behind in the first place – “you wouldn’t come back the same you”. Without question, he is recommending we should continue to monitor with upcoming MRIs, and several times pressed the “very slow” message. It’s so damn easy to say, but wasn’t very easy to hear.

I called my dad and gave him the news, and of course broke down because it was all too familiar. But dad is always great at comforting at just the right moment. He reminded me that we still have no idea how long the original tumor was there in the first place… that it may have been since I was a little kid. And as far as the remaining tumor grows, “we’ll just have to pray that it grows so slowly that you outlive it.”

I think Dad is spot on.

I’m heading back to Houston in May with Mom for a full set of tests, obviously including another MRI. The scans from last week have been passed to the team there so we’ll be comparing lots and lots (and lots) of MRIs and I’ll update you accordingly. For now, hope you’re all doing well.

Love you.

P.S. Today is Jill & Ben’s one-year anniversary! Hence the photo from last year. I’m heading out to spend a week with them on Wednesday. Can’t wait!