Able to Predict Slight Changes in Weather in a Single Bound

Several weeks further down the road, and things are looking up.  I am eating, working, cycling, teaching, gaining some weight, and generally have enough energy to last through the day.  By Friday afternoon, I am generally waning a bit, but can’t say that’s new.  Or specific to me.

Got my next MRI two Fridays ago.  I am going to try to go to this imaging place from now on.  The tech asked my music preference (and put on a station to match!), and then, just before we started, she asked “would you like a warm blanket?”

“Why yes.  I would in fact like a warm blanket.” And quite honestly, now I want that to be an option in other venues.  I think a warm blanket is up there with sprinkles.

“Things that make everything better for $400, please, Alex.”

They do the MRI twice, once normal, and then they inject dye and do it again.  I almost asked for a new warm blanket at the midpoint.  Maybe next time.  The only thing that could make this imaging place better is if they had a unique color of socks that I shouldn’t take with me, like green.  But alas, their warm, non-slidey socks are blue, like the ones from the last place, where I specifically did not take them home.

Met with brave Dr. V yesterday to go over the results and talk about where things are.  He started with “well, I’ve got good news and bad news.”  I replied “Fuck!” but it may not have been out loud.  It certainly was not how I wanted to start things.

Last visit, he told me that he would send out a sample taken from my original biopsy to do an additional test to see if there was either a protein, a chemical, a mutation, or maybe an alt-rock band present in the sample called MGMT.  His bad news was that the lab told him there wasn’t enough material to test, but the good news was he is going to try a different lab.  Why this is important is that MGMT - either the lack or the presence, whatever the hell it is, will tell us whether further chemo might be useful, though there really is no specific evidence.

“Jesus, Dr. V.  That’s your bad news?  What about the MRI?”

“Sorry, I looked at that earlier, and it looks the same.”

Lead with that next time, please.  Or at least consider if what you are telling me is actually “bad news.”  I actually think it was good news / neutral news.  No specific new reason to go back onto bonus chemo for the next few months.  What lab you use - not really news I care that much about.

So, backing up a minute. I had just had a follow up MRI, and was coming into see the doctor to review. When his first words are: “So, I have good news and bad news,” here are a few of the things I immediately thought:

“The bad news is that the tumor has blown up and is growing aggressively. The good news is that you likely will make it till at least Thanksgiving.”
Or...
“the good news is that the tumor is stable. The bad news is that you now have a flesh eating bacteria in your brain.”

 By the way, should you not know this about me already, I’m a worst case scenario kinda guy.

Dr. V agreed that feeling better and eating totally outweighs bonus chemo, which he also seemed to admit hasn’t really been proven to do anything, but it might, and they’ve always done it.

He did ask me about other symptoms, and I told him about my micro-headaches.

I know how this is going to sound, but it may be all in my head.

I have been having small, short-lived headaches that seem like they are spread across where the ribbons of tumor might be. I don’t have any actual evidence of this, thus “all in my head.” Going back to worst case scenario me, I worried that the tumor was blowing up, or the flesh eating bacteria was, well, eating flesh.

But Dr. V surprised me. “You know, there have been several changes in the weather lately. When they did the biopsy in May, the hole they drilled likely changed the pressure inside your brain. You very well may be feeling the change in atmospheric pressure.”

“Wait! Are you telling me my brain is now a barometer?”

“Well, kinda.”

Not only is that not the bad news I worried about, that’s kinda awesome.

 I told my brother about his and he agreed. “You were wondering what super power the radiation was going to give you. Maybe this is it?

We even came up with my new super hero name. I am Super Doppler. Able to detect changes in barometric pressure to help predict slight changes in weather.

Which would have come in handy last weekend. My powers were there, but I had not yet identified them or figured out how to use them for good. I flew up to Dallas Sunday, and had just checked into my hotel at 8:45 when my head tingled. Then my phone blared out a scary warning about a tornado coming right at me. Then all power in the hotel went out. Then Kaileigh, who happened to be in Dallas visiting her boyfriend Randall, and was a couple miles south of me, texted “there is a tornado on the ground north of us and headed toward you.” I asked her what one is supposed to do on the 4th floor of a Hyatt Place. And started wracking my Super Doppler brain to see if I remember a hotel being destroyed by a tornado. A hurricane, sure, but a tornado?

She told me to hunker down in the bathroom, which I did. I asked if she was safe, and she told me she, Randall and all their animals were hanging out in the bathtub. A “yes” would have been sufficient as an answer, but ok.

We all survived the North Dallas tornado. It passed about 1/4 mile from the hotel, headed straight toward my office, then went around it after taking out a lot of trees, power lines, and much of a Cheddar’s restaurant. Fortunately, no injuries, just lots of damage. I need to work on fine tuning my powers so as to be of use next time. And by the way, Super Doppler tells me it’ll warm this afternoon.

Apparently, He's Not Santa

Just starting to emerge from the latest, and most pernicious phase of this whole adventure.  Honestly, I'm really starting to regret getting a brain tumor in the first place.

Appetite went to zero.  Things tasted terrible.  Stupid goal of getting below 200 pounds reached.  Currently at 193 and have re-set my FitBit to congratulate me when I gain weight.

I did the first round of bonus chemo the week of Labor Day.  I will never enjoy Labor Day again.  Have had maybe three full meals since then.  Lots of Ensure, popsicles, granola bars, and bananas.  And by lots, I mean some combination that gets me to near 2,000 calories per day.  Never thought I'd be counting calories, or that it would be to ensure I get enough.

Second round of bonus chemo was scheduled to start yesterday.  We switched over to Dr. Vailliant's new practice and saw him last Friday.  We talked about my food issues.  I told him the synthetic cannabinoid, which although it has a pretty cool name, did nothing for me.  I also told him of friends and family who answered my plausibly-deniable call for non-synthetic relief with, well, non-synthetic relief.  Thanks to redacted, redacted, and especially redacted for the gummies, drops, and the chocolate covered espresso beans.  Unfortunately, these solutions were also largely unhelpful. 

Dr. V asked "have you tried anything (voice lowering), naughty?"

"Um, besides the edibles I just admitted to?"  Doc, love ya, but I'm not sure you and I see our relationship in the same way.

"Like, chocolate, or some other sweets."

Oh!  That's naughty for Dr. V.  Yes, sugary foods are still edible, though still need to balance the whole diabetes thing.  Should be in your chart somewhere.

I do admit that there have been a number of days when the vast majority of my caloric intake has been through a Starbuck's Venti Caramel Frappuccino (a naughty 510 calories).

I asked him about the costs and benefits of doing bonus round two.

He was typically circumspect about what the research shows, what we could do later, and what holding off means.  To his credit, he did recommend we hold off on bonus round two, as eating, gaining energy (and weight), and getting back to some semblance of normal is the priority right now.  So bonus round two is on hold, for at least four more weeks.

I am very excited about that, but have this irrational little voice in my head that is telling me, "great.  You want to enjoy a freaking cheeseburger, so you just talked yourself out of life saving treatment."

You know what gets rid of that irrational little voice?  A hefty dose of chemo.  So keep it up, asshole, and I will poison you out of my head.

Dr. V did say that it takes about four weeks for the chemo effects to fully subside.  I am at 3 1/2 weeks.  And whether that is true or just helped me think things were on the verge of getting better, I am actually slowly starting to get there.  Still not hungry, but the thought of food has moved from awful to neutral.  I can slam an Ensure in 4 seconds.  And not everything has an aftertaste of straw.  Baby steps.

Oh, and I drove yesterday.  Dropped off my dry cleaning, picked up a prescription, and went to the HEB to refresh my Ensure supply.  About 1.2 miles round trip, but an amazing journey.  Taking things slow.  Won't do my cross-country tour of minor-league jai alai stadiums till November.

Small goals - eating; driving; gaining weight; exercising; then cycling.  Getting back in touch with people.  Repatriating the non-synthetic gifts I received with redacted, redacted, and especially redacted, should they want them back.  I pulled out from this weekend's MS 150 and from the 1/3 of the Half Ironman late October.  Those made me sad, but there is no way I could have been close to ready for either.  Next year's goals.

And finally, trying to figure out what naughty things I should get.  Been thinking about Sticky Toffee Pudding.  Still in the mindset where I worry about eating something I really love, for fear of ruining it forever if it tastes terrible now.  But I think I will just have to take that Sticky Toffee chance.