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

Tomorrow will be my first week on Temodar, the chemotherapy drug. Each day (Monday – Friday) I’ll be taking the drug at bedtime. To avoid the nausea side-effect, I’ll first take Zofran about 6 hours before I plan to take the chemo drug and then once again right before I take it. In prepping with that, and taking the actual drug at bedtime we hope it will help avoid the worst of the side effects. I also have to make sure I’m taking the medication on an empty stomach (yet I’m supposed to try and gain weight??). I’ll do this for the first five days of every cycle.

Next Monday I’ll be going in for week 2 of 4, which is for the Avastin infusion. I’ll also start my weekly check on my blood counts.

Week 3 of 4 doesn’t have much going on other than the weekly blood check, however it is supposed to be the week where my blood counts are at their lowest.

And finally, week 4 of 4 I’ll have my other Avastin infusion. This completes the 28-day cycle, and at this time we plan on me being on this plan for a year unless something changes and warrants new drugs or a new cycle.

In my meeting with Dr. Trusheim on Thursday I got to spend some time with the team discussing the details of the drugs, their side effects, and what to expect as I move through all of this. If the Zofran can do its job and I’m able to avoid nausea, it may be a little easier to tolerate than what I remember from when I was on chemo in ‘95.

Unfortunately, due to my Li Fraumeni syndrome, the chemo puts me at higher risk of developing tumors elsewhere in my body so I’ll be having body scans (most likely CT) moving forward to make sure we’re keeping the rest of me in check. That cycle is still TBD.

I was also able to get the staples removed from my surgery/biopsy that I had in Houston. Ahhhhhh.

After the stressful week, I got to see Ray LaMontagne with my friend April on Friday. It was a great time and a nice escape from all the cancer stuff. Thanks April!

And on Saturday I decided to go down to Mankato to see Mom & Dad. Food is going to start tasting funky soon, so I figured it was the last chance for Runza weekend. Mmmmmmmm.

I’ll keep you posted on how things go this week.

Casey

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 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!

Hey everyone! Hope you’re all enjoying summer. We finally got rid of the cold weather and are enjoying some sunny warm days. I still am waiting for some good thunderstorms though! Instead, I’ve been spending lots of time on the bike trails. It’s kind of become my thing lately.

For those who haven’t heard, I left Target in pursuit of a job that felt more my style. I’m now a producer at Proximity Minneapolis… an agency with offices around the globe that just opened up in the city. There’s a total of five of us at the moment, and that alone gives me reason to celebrate. I know everyones
names! :) Proximity is tied to a traditional agency, BBDO, and so we’re sharing offices with them. It’s been an outstanding month getting into this new role.

On Monday I got a call from my neuro-oncologist in Minneapolis and was reminded of my MRI “this Thursday” (today). I had it in my iPhone as something scheduled for July, so it was definitely a surprise. Regardless, instead of rescheduling, I decided to just go ahead with it.

I went in for the MRI (which was only about 25 minutes this time!), and followed-up with Dr. Trusheim. The news was good. “Things are looking great.” That’s all I needed to hear. And there wasn’t much more to discuss, actually. Things have been good the last couple months. Only minor hints at seizures… nothing to concern myself with. Oh, and I’ll be getting a new leg soon. Christmas comes early this year!

The appointment did sneak up on me though, so by the end of the day I was happy to just go home and relax. I quickly forget how tense they make me feel.

Hope all is well with you. I’m looking forward to Jill flying in for George Michael in a little over a week. We’re also heading to see both Grandmas the following weekend. Grandma Pille is celebrating 85 years!

Talk to you soon.

I just spent the last week with Dad in Houston for an extensive series of appointments that made up my first annual checkup in Houston. It’s been about a year since I finished radiation, and combining that with my continued monitoring of bone, colon, and general well-being, it became pretty intense!

On Tuesday we flew down to warm, sunny Houston. Upon arriving, we went outside to play a little Farkel, knowing that about an hour later I needed to start prepping for my colonoscopy on Wednesday morning. Chugging Fleet phosphosoda is not as thrilling as it sounds, trust me. I spent the evening on the toilet, after a day of not being able to eat a single bite of food. And I continued that process again at 4:00 the next morning. By the time the appointment came, I was anxious to get knocked-out so they could get it done with. I don’t really remember meeting with the doctor afterward, but according to the printed report, and Dad’s description, they found a polyp and removed it for a biopsy, but are of the opinion that it is not cancerous. They also shared photos that I have in my documentation, though I’ll spare you all. I’ll be receiving the results this week.

I was just happy to finally make it through the day and be able to eat a meal again. According to my weigh-in the next day, I had lost two and a half pounds in the previous two days. Eeek.

Thursday was completely filled with appointments. Bloodwork, bone-scan injection, EEG, bone scan, MRI, abdominal ultrasound, etc. From 8:00am til 5:30pm we were booked solid, and another day went by where I wasn’t even able to eat (except for a granola bar that morning).

On Tuesday I had bought Dad and I tickets to the Astros game as our reward for the stressful week. I assumed Thursday was going to be the worst, since Friday was only two doctors appointments (at 10 and 11am) and a cognitive test at 2:00. But the day quickly turned south. At my appointment with Dr. Wolff, I was told that they were requesting a chest x-ray due to a possible “pleural effusion” behind my lungs that was detected on my ultrasound. The x-ray would confirm if there was something there or not. Luckily, it came back negative.

I was then told that the bone scan had a couple of spots that they noticed in my left leg (full leg, not the amputated one). He showed me the scan, and there are three spots, just below the knee, and the top of my foot, and all were highlighted on the scan. He checked these areas for any pain, and asked if I’ve had any bumps lately. No pain. No bumps. His initial opinion is that the foot isn’t an issue, and that the others in my leg may be the result of a stress fracture, but that he was ordering an MRI to get a better look. More frustrating news.

Strangely, my brain was the least of our conversations. The MRI showed no change. That’s the best news I could hope for!

I went to meet with Dr. Slopis, who informed me that I had a seizure during my EEG. I wasn’t aware of it when it happened, but it was recorded no less. So we discussed stress and any symptoms I’ve been having in recent months. I’ve been having mild symptoms occasionally, and a couple of seizures, but at a level that hasn’t caused any concern. My options are to up my medication or try new meds, and both of these run their own risks (feeling cloudy-minded or having new side-effects from new drugs), and both Dr. Slopis and I agree that unless things worsen, I’ll stay with my current meds and just continue documenting any occurrences. We also just discussed stress in general, it was a good conversation, and it reminded me of how much adoration I have for him. Between him and Dr. Wolff, I definitely feel that I’m being looked out for.

By the time I was done with this appointment, it was nearing the start of my cognitive test. Dad and I raced off for some quick lunch before my two hour appointment. We were also informed that my leg MRI would be FRIDAY NIGHT AT 9:00pm!! Obviously this overlapped the Astros game, which was what I was needing to deal with this stress. I was also surprised to know they even scheduled stuff this late.

After the cognitive test, which was the standard interview/test process, we checked to see if we could get an MRI earlier. It was nearing 4:30. We were told to head over and check in early. The woman at the desk made it seem like we could get in early, but by the time I was called back, it was nearly 6:00. Still, I thought we might have a chance. A standard MRI is about 45 minutes (through my years and years of experience). I assumed we’d just be a bit late to the game. I raced to get my gown on, and onto the MRI table. Unfortunately, it all went downhill when they realized that my leg is too long to scan in one process and that it would have to be done in two parts. UGHH! I could only stare at the ceiling for two incredibly, ridiculously long and boring
hours, knowing that we could only catch the end of the game, at best. When the scan was finally done, and I met up with Dad (who had just settled in for a nap), we had both surrendered to the fact that the game wasn’t gonna happen. Instead, Mission Burritos were in order. A tasty treat to take the stress of Friday away. It was nice to have the week over with.

Now I wait for results of 1) the colon biopsy, 2) the leg MRI, and 3) the cognitive testing. I’ll be receiving all of that this week… hopefully sooner rather than later, as it’s causing a bit of stress and fear. The doctors have said that these are more just to double-check. But I’ve been there before. Still, I’m trying to think positive.

I’ll be sure to keep you updated once I know all the news. Until then, think good thoughts. Hope you are all doing well, and enjoying this beautiful weather. I went for a bike ride today and couldn’t get enough of it.

Love you.

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