Check up Update and Happy Holidays

We are back in Lubbock just in time to spend Christmas as a family. Perhaps just as significant for us, we got back in time to see Aidan's last basketball game before school holiday break! Most people who know us also know the important role basketball plays in our family. Particularly Aidan's love of basketball. I did find myself telling them on the ride home that I've been so busy with self care over the past couple of seasons, I'm not even feeling like a fan of college ball anymore. I'm sure that will change soon. All it takes is for UK to have a great season, for UK to get a new coach (who I like better), or for Aidan to be playing in college. I absolutely plan to see that in about 5 years!

Before leaving Houston we spent the morning at MD Anderson. First up was a 6 AM visit to the scanner. nothing like the taste of saline and contrast dye first thing in the morning! I insisted to the technician that the MRIs seem to be faster than they used to be and he acknowledged that the newer machines are faster by about 15 minutes total. I guess when you are in a scanner every month or so for almost 2 years, you notice these things, even at 6 AM. From there everything went fairly quickly. Once the scan was finished, we were off to the main building where we took the stairs to the seventh floor and checked in at Brain and Spine. We saw the nurse, then a resident, who took vitals, did a quick neuropsych physical evaluation (touch your nose, do the drunk walk, balance with your eyes closed, etc.). Once Dr. No Naps came in, I initiated a quick talk about his demeanor. I told him that the last two times I've been there, he's been in a bad mood and that we were going to have a talk about "turning that frown upside down." And then we proceeded to chat. Jason says I was off the rails, but I say I was just taking charge a getting everything back on track. By the end of the talk, Dr. No Naps was in a better mood and he and Jason were theorizing about why my frontal lobe (the area that is in charge of impulse control) didn't appear to be working. I suppose my "take charge" attitude brought on by sleep deprivation and excitement about the scan results, looked a bit uninhibited.

Once I was satisfied that our talk was over and that Dr. No Naps was all straightened out, we moved on to talking about our purpose, my health. As a recap, there is no remission for GBM. It is always assumed that little cancer cells are in there because GBM spreads within a specific area. In addition, even after the most recent surgery, there was an extremely small piece left too close to a blood vessel for removal. To keep what's in there stable, I had one dose of CCNU chemotherapy 2 months ago, my white blood cells and platelets fell, and I had to stop until my numbers came up to an acceptable level. As of Monday, my platelets were beyond an acceptable level, but my white blood cells remain low. The increased platelets were deemed to be enough of a change to allow for the chemotherapy to continue now. This type of chemo is one pill every month. Therefore, I took the dose last night. So far I feel pretty good. I think I'm more tired from the drive to Lubbock than from the chemo.

The other part of my check up with Dr. No Naps was the scan results. The official word is that the spot is stable from last month. The part that they thought look "nodular and solid" last month was less bright from the contrast than it was before. I asked Dr. No Naps if he agreed with this observation and he said yes, this month's scan was definitely less bright in that spot, which makes it seem less solid. Overall, the assessment was that the scan was stable (meaning little to no change) from the last one. I'm taking full responsibility for this. I've gone a bit stricter with my diet, so my glucose/ketone numbers have been great for the last two months. Also, I've found some research showing physical changes brought on by visual imagery. Therefore, I've incorporated two daily visual imagery exercises. First, I visualize red and white blood cells pumping into my body from the bone marrow. I figure this one will be an interesting one to try since I'll see my numbers weekly. You know, and empirical test. The second imagery exercise goes like this: I imagine little sickly cells (cancer cells) shriveling and bursting in the tumor bed, then the river of cerebral spinal fluid washing away the debris. Jedi mind tricks!

Once we were done with Dr. No Naps and had confirmation that something I'm doing is working, it was time for my neuropsych cognitive assessment. I apparently still don't have any cognitive decline. I don't have the results yet, but the exam administrator said she is sure I am still functioning at a high level. I could have told her that without the testing, but I guess they have to train their people on testing so I'll play along. Next, because oncology ordered the chemo, I had to take my obligatory pregnancy test. Still not pregnant! We picked up the chemo from the pharmacy and we were out of there before noon. I don't think that's ever happened on a check up day. It was amazing! We were on the road at 12:30 and in Lubbock by 1030!

So, as we celebrate the holidays starting next week, I will continue with the extensive self care regimen: diet, exercise, foot soaks, ginseng tea, visual imagery, meditation, sleep schedules, and quality time with family and friends. As we spend these holidays together, we will be reflecting on how fragile and fleeting life and health can be at the same time that we remember to be grateful for the resources we have at our disposal that keep my illness manageable. I sincerely hope that the holiday season brings hope to you and yours as well!