Establishing my routine, happy to be home, and exogenous ketones.

It's been only 3 1/2 weeks since my surgery and it feels like so much longer than that. Of course, I've been back and forth between Houston and Lubbock a few times, I've been working more than I should be at this stage in the game, and it's just been generally business as usual with a little added stress. I had some tests last Monday to check my lungs out for the impending chemo. I guess my lungs are in excellent shape, if you believe the pulmonary technician. He seemed pretty good so I'm taking his word for it. I also had a breathing treatment to ward off pneumonia since my lymphocytes are perpetually low. My docs shake their heads when I say things like, "That's just who I am. I have low lymphocytes." That's me accepting the new normal. Why fight these things when you can just embrace it? I flew back to Lubbock Tuesday morning. I found my way around the airport and managed to get where I need to even with limited vision. I get to stay in Lubbock until the week of Thanksgiving! Yay for a few weeks at home!

Since being home it's been a constant internal struggle to get into a routine that feels natural. I've got the food, blood testing, and meds routine down pretty well. I'm trying to incorporate my walks with Lois, time with my boys, a mindfulness meditation routine, and going to work. I get a bit frustrated with fatigue and then I have to stop and count the days on the calendar since surgery to force myself to get some perspective. I think Jason and I both forget that the surgery recovery takes a minimum of 4-6 weeks. My energy level is up and down and the fatigue can sneak up on me. Plus fatigue makes the vision less predictable. One minute I feel like I can see my entire visual field and the next someone walks by on the left and it scares the crap out of me when they suddenly appear in my field of vision. Of course, Jason likes to point out that I may not know what I'm not able to see but how would he know? 

It's a constant struggle for me to not be able to drive. Earlier this week I tried to explain to Jason that my vision was better and I may be able to practice driving. He was not convinced but we did drive down to the pharmacy a few blocks away. He was a basket case in the car and acted like he was riding with a teenager who had never driven before. I reminded him that I have a million safety features on my car but it didn't seem to ease his anxiety. He even put together a visual field test on Powerpoint. I did extremely well in the right visual field but I apparently failed on the left, if you believe Jason's assessment. Oh well- you win some, you lose some. I've agreed to wait to drive until I pass a visual test by an actual optometrist. I have one scheduled for December 4. Surely by then I will have more improvement. The way Jason is acting, it's almost like he thinks I'd sneak out at night to go drive around. I think he has a little more stress about this than is necessary. Yes, I want to get back to driving but I PROMISED I WOULD WAIT. Luckily, people take pity on me when Jason is held up in meetings and help me (and Aidan) get home. I'm a ride-bumming mooch! All that's left is to move into my mom's basement (if she had one). 

To make things a little more interesting, I've been having vivid nightmares that wake me up at night. It seems like I may have had some vivid dreams after the last surgery too, so I will just wait for this to pass.  

During and after the surgery my glucose surged and my ketones plummeted. This was most likely due to the steroid. Luckily, I was able to talk my way off the steroid a day early. I had already talked them into letting me take a lower dose for a shorter duration than last time. It took a few days for my numbers to level out but even then they were up and down. This was a little disturbing since I always try to stay within the "zone of limited tumor growth" as defined by Seyfried & Volek (http://www.dranthonygustin.com/what-is-glucose-ketone-index/). Basically they've developed an index that, when you stay within a certain range with glucose and ketones, you can be fairly certain that the tumor (or any cells you might have floating around in there waiting to grow) will have limited fuel for growth. These researchers do their research almost exclusively on GBM so I feel confident that staying within the zone is a good idea. Since what was taken out recently changed so little in six months that the doctors were floored by the subtle changes, this seems to be working for me.

When I couldn't quite get my ketones where they needed to be last week, it occurred to me that without any body fat, I have to depend 100% on the fat I eat for energy. Most people struggling with getting ketones up could just fast for a day or two and burn some body fat. I don't have this liberty. Also, because eating fat fills me up and I don't always want to eat more even when I am not eating lots of calories, I needed some other way to get ketones. Exogenous ketones had been recommended to me before by experts and novices alike, but I had never needed them until now. I read some extensive reviews and settled on a brand called Ketond. They are expensive, but for me they did the trick. The first day I mixed the powder in my water, my glucose dropped and my ketones surged. I've been in the zone of limited growth on the GKI index ever since and my energy level is a little better. Previously I was skeptical of the exogenous ketones but at the conference last February, they talked about using them to get navy seals and astronauts into ketosis quickly (in an effort to help them avoid seizure activity when using rebreathers). They also discussed them for people entering ketosis who want to avoid something called the keto flu (this is when people have flu like symptoms as a side effect of getting off the carbs). When I realized I needed an energy bump, I figured it was worth a try. Turns out, it was a good idea. Now I'm just trying to figure out how many doses I need a day. One serving seems to bump up my numbers pretty well but Jason thinks I should split it up to two half doses a day to make the energy last all day. I haven't tried it yet but I'll keep you posted. To keep things as tight as possible, I'm staying strictly at 90% or more calories from fat and a 4:1 ratio (4 grams of fat to every 1 gram of carb +protein). I'm not screwing around with any residual GBM cells. There is an extremely small spot that was very close to a blood vessel that was too dangerous to remove. We don't have a way to know if it's active tumor or necrotic tissue and it's much smaller than what was left in last time. If it is cancer cells, they will try to grow. Any residual cancer might want to survive, but I want to survive more. I guarantee it. I am renewing my commitment to do whatever it takes. One day at a time.