Great news today at the doctor’s office. What’s left of tiny bit of tumor isn’t doing anything. 😊

I can’t help but think about how lucky and grateful I am to have survived ten years, two brain surgeries, 34 radiation treatments, three different types of chemotherapy, and the drive home from Rochester today in one helluva winter storm. One thing we’ve been wondering is, what exactly happens when the clinical trial is over? What kind of treatment (if any) will I take next? Will I be on chemotherapy for life?

When I asked my doctor about what the next steps are once I’ve completed treatment, he reminded me that while this type of tumor is still incurable, he explained that we’ll keep a very close eye on it. He said we’ve got lots more options if the tumor decides to wake up again. Then, he gave me a fun analogy. He compared the plan to the Korean War. My tumor is North Korea, the doctors and the treatments are South Korea. Even though the war never ended, both sides are still watching each other very carefully. That’s what we’ll do with my tumor. The war isn’t over yet. We’ll keep our eyes on each other, watching, waiting. Cease-fire.

MRI continues to show no evidence of tumor recurrence. Both clinically and radiographically he is doing well. Excellent performance status (Karnofsky performance status 90) no evidence of tumor recurrence on the scans. Patient will continue on with the clinical study drug combined with lomustine. Patient had questions regarding other options to consider in the event the tumor grows back down the line and fortunately we do have other treatment modalities to consider, such as bevacizumab among others. We’ll cross that bridge when we get there.

Dr. U clinical notes 1/17/20

My other appointments went well this week. My hearing test was normal – even slightly better than the last test. My blood counts are bouncing back from the last round of Lomustine.

Things are looking great today, but I’ve got to say, this last round of chemo really sucked. I’ve been very fatigued and have had to take more naps. One of the hardest parts about being a brain cancer patient is that the disease itself and the treatments required to delay its progress literally affect the organ that is the conduit to my human experience. Many times I don’t know the difference between the symptoms of the disease, what are side effects of the medicine, what are side effects of anxiety, or what are just me being a pansy. Because of this, I’m not great at communicating what I’m feeling because I don’t want to unnecessarily alarm those around me. I don’t want to appear weak. I’m reluctant to write about these things for the same reasons. I wanted to write in my blog a hundred times in the last few months about how crappy I was feeling but I don’t want to sound like a broken record.

If you saw me in public and didn’t know what was happening, you’d have no idea. I don’t look sick. You can’t see my dizzy, foggy, confused brain. I don’t have the bandwidth I used to. The glasses I wear cover up my eyelashes that have mostly fallen out. Mostly, I still try to go about my normal business. Nevertheless, I felt really crappy during my last round of chemo. If my cancer is North Korea and my treatment is South Korea, maybe South Korea needs to lighten up a little bit with the nuclear bombings? 🤷‍♂️

I’m going to spend the rest of the weekend relaxing with Alicia and Kujo. We’ve got some snowshoeing to do and 2020 adventures to plan. My next scan will be in March!