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 wanted to wish you all a happy Valentine’s Day. It’s not a holiday I’ve celebrated much in it’s typical style, but for two years I’ve celebrated as the anniversary of my surgery. And about this time two years ago, I was getting back to my hospital room with my family after my successful surgery.

Mom and Dad were up last night and we went for dinner and it came up in conversation as one of those “wow” moments… it’s hard two believe two years have passed!

A brief update on seizures, medicine, and all that fun stuff: I’m smack in between visits to Houston, and will be scheduling my MRI in Minneapolis for the coming weeks. I’ve actually been delaying it just because work has been so busy.

I’ve been having more intense seizures again, and the last time I updated you all, I had been put on Inderal in hopes of dealing with my migraines. After almost two weeks of being on the drug, I had a very intense dizzy spell at work. It was something like walking on jello in a marching band, or at least that’s how I was describing it at the time. Very freaky though. I called the team in Houston and we lowered my dose, and since then I have only had very mild dizzy spells. The seizures have remained though… my most recent being yesterday in the middle of a conference call at work. They’re frustrating, but I’m trying to avoid the stress that only makes them worse. Hopefully they’re only temporarily stronger. If they’re still not resolved by April/May (when I return to Houston), I imagine we’ll be trying new drugs. That has it’s pros and cons, as my current meds have the least amount of side effects.

Along with the meds, the Houston visit will be my annual colonoscopy, bone scan, MRI, blood work, EEG, and all the other fun stuff. I’ll keep you updated!

Hope you’re all thawing from our long winter.

Love you.

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.