"Sometimes the transition from being in control of your life to having absolutely no control is swift, but other times it is so gradual that you wonder exactly when it truly began." Mickey Rooney[...]

What we learned today:

1. The 3 T MRI is indeed part of our original clinical study to observe the side effects of proton therapy. I will see the radiology oncologist every 8 weeks. This is great because he's my favorite. He says I say that to all the doctors. [...]

Check up day was exhausting. We must have walked back and forth from one end of the place to the other five or six times. I think the schedulers do this on purpose to make sure you are getting your exercise in. Now if they'd just have nutritious food in the cafeteria, I think they'd be on to something. Seriously, although the food tastes good, I have a very difficult time finding anything of nutritive value. Especially on my keto diet. You'd think they'd have more variety. They must have outsourced to Germany or France (just kidding European friends- I know Americans eat worse than Europeans). [...]

Getting back into mainstream life after a life changing illness is an interesting feat itself. We've mostly unpacked everything from the 3 months in Houston. I've gone back to work at least a few days per week and I'm actually getting some things caught up. I have incorporated a daily workout, which is making me feel great and helping drive down blood glucose. Jason is working hard to meet July 1 deadlines while also helping me find new and exciting ways to make this diet work. Aidan is staying up late, sleeping late, and going to basketball in between playing a few video games. He's becoming such a teenager! There is still so much house stuff to do so we hired one of Aidan's previous nannies to help out. She's a good friend and we've known her forever so I love having her help me out. I like to call her my own personal nanny but she's really like a personal assistant. Mostly she helps with errands, things that require bending over (changing filters, laundry, etc.), and helping me get my thoughts straight when I get overwhelmed. The truth is, I've always wanted to be a person who needs a personal assistant. People who have personal assistants are important. So, you know, if we are going to be taking on this full time job of cancer, we may as well outsource a few things. Maybe I will buy a town car and have her drive me around while I sit in the backseat. Or maybe I will have her walk behind me with a briefcase. I know, she can sit and go over my schedule with me while someone is doing my hair and make up just like on The Kardashians! Too much? On the weekend we are on our way back to Houston for another check up Monday. This means that a week after that is chemo week. From last time I know to start the stool softeners (although I still don't know what they soften) at least a week in advance or regret it. Also, originally we had just a few appointments on Monday but now we have several on both Monday and Tuesday. That's what they do there-- they just add random appointments to your schedule so you have to stay on top of it. Luckily, they have an app for that. Anyway, some of the appointments added appear to be related to some of the studies we enrolled in and one of them involves an mri scan (our next clinical scan was scheduled for July). We hope to get a copy of the scan but we're not sure if we can since it's a research study and not a clinical scan. I'm thinking maybe I can sweet talk my way into a copy, it's worked pretty well for me so far. I can be pretty persuasive when I turn on my charm. And Jason thinks he's the charming one-- sheesh!

So much going on this week and it's going to take some writing to get you up to date! Allow me to begin with a HUGE thank you to everyone for the amazing amount of support we've received since February and continue to receive. The comments online, cards, gifts, calls, visits, monetary donations, calls to legislators, etc., have been everything we needed even if we didn't know it. Although there has been little time yet for thank you notes, there are 2 specific things I'd like to comment on.[...]

So last week's first adventure in double dose chemo did not go as well as I'd expected but I learned some things. Mainly, that I must take the stool softener for at least a few days before I start the chemo. I also learned that if you are stopped up on one end and the food has no place to go, it comes out the other end because it doesn't all fit in the stomach at once. As a researcher, this is important information that I will keep in mind for next time. I should have consulted an old person on this whole constipation thing, I'm way out of my knowledge area. However, now that I think it through, it makes sense from an engineering and physics perspective.[...]

Another day of chemo went off without a hitch. No upset stomach, no other troublesome side effects. However, I had talked with my friend Lily (those who know her know she is in this with me) on Tuesday before I started this round of chemo and she asked me if the chemo affected taste buds, breath, sense of smell, etc. I told her that I had previously had taste issues, bad breath issues, and overall sense of "I smell" while Jason insisted that I was not smelly. I had attributed this phenomenon to ketosis, even long past the point that ketosis smell was expected to last, and not to the chemo. Two days into the chemo this week and I now know that Lily was absolutely correct. It's not the ketosis- it's the chemo! It turns out my coffee hasn't been old or tainted or rancid. Jason insisted that it wasn't, but, of course, I did not believe him. I wonder what else I thought was old or not worthy of my ingestion while on chemo. Also, from the moment I wake up to the moment I go to bed I am pretty sure I stink. Again, Jason insists that this is not true but how do I know that? Maybe he's just saying that so I won't feel bad. Maybe he's protecting me...oh, nevermind. That's not the man I married. Jason would tell me I stink![...]

I went this morning for a hearing test to see if Jason and I are just insane or if I can really hear. The results were somewhat inconsistent and the audiologist didn't really know how to explain it. I might have MD Anderson's audiology department run another hearing test just to see what they think.[...]