You Can’t Have Me Back

Something non-brain tumor and/or recovery related. (But quick update- still not really eating, a very amazing relative brought me something that has helped a little, bottomed out I hope at 195 and am slowly slowly slowly improving). But on to non-tumor related thing.

Got this in the mail today. Southern Living magazine wants me back. I’ve never subscribed to Southern Living magazine.  It’s one of those magazines I avoid even in the Supercuts, while waiting for my turn.  A six-year-old ESPN Magazine about the start of the 2013 NBA season is preferable, as is HairStyles Quarterly.  And now that I no longer spend any time in the Supercuts, I don’t even get to scorn it anymore.

So why does Southern Living magazine think I am a lapsed reader?  I don’t read anything in the genre - Racist Quarterly, MAGA Times, or Chicken Fried Everything.  Yes, I am from the south and live there, but I fall squarely in the Neil Young side of the musical feud, not the Leonard Skinnard side.  My only lapsed magazine is Wired, and they want me back as well.  I do note that the return address is Alabama, so maybe they sent out these notices to everyone they could before the big sharpie hurricane hit.

Or possibly, is this a veiled racist attempt to get me back to my southern roots?  As a proud, Southern, white male (maybe they didn’t quite get to the Jewish, progressive, Unitarian, social worker part).

Well, if the envelope didn’t definitively answer it’s own request - you never had me, and you will never get me back - the inside sealed the deal.  First line “Russell Smith - you qualify for our special Senior Savings rate.”

Oh, hell no.  To reiterate, ten cents off a bagel or a free extra southern pride magazine will never be worth the senior discount.  I do not want your magazine.  I do not want your senior discount.  Take me off your stupid list.  (And I hope you fared well from Hurricane Sharpie.)

Never Thought I'd Miss the Visual Hallucinations

So, side effects are annoying up to a point.  Once they build and don't diminish, they can get really ugly.

Case in point - my hunger has not returned at all after last week's chemo.  It hadn't been great before that, but the higher dose made me not want to eat anything.  And made everything taste more and more like straw.  One by one, the things I could eat fell away.  Nothing sounded good, which matched exactly with the fact that nothing tasted good.

I joked about my stupid goal of breaking 200 pounds.  Well, I'm at 196 and falling.  I'm losing about a pound a day.  At this rate, I'll be around zero by the end of March.

I have tried a few things.  One of the doctors (I'm too weak to even remember which), got me a prescription for Marinol (synthetic THC).  It has done absolutely nothing.  No munchies, no profound insights, zilch.  Sad!

Jill very gingerly recommended getting some Ensure.  I think she was worried that I might freak out about drinking an old person's drink.  I said bring it on.  I need some calories.  After a bit of reflection, I do worry that I will break down and join AARP after all, and that Depends aren't too far down my road.

But I need to eat, or drink, some meals.  So she got me some neopolitan ice cream flavored Ensures. Some strawberry, vanilla, and chocolate.  Things didn't start well.  I started with a strawberry.  If you have ever read "Fast Food Nation", you may remember that there is a section about the "flavoring industry" - a series of non-distinct chemical plants in New Jersey.  Strawberry Ensure tasted like it came directly from a vat in the middle of that.  And by the way, if you haven't read Fast Food Nation, you should.

Vanilla was a little bit better, but still kinda terrible.  Chocolate was the "winner" - it was better than horrible, even approaching drinkable.  I bought some actual neopolitan ice cream and plan to start making full-on Ensure milkshakes.  But not strawberry. I may never be able to eat something strawberry again.  Which is one of my fears.  Assuming my tastebuds ever do come back, and I am ever hungry again, there are so many things I bet I won't want to eat anymore.  But one step at a time.

I am forcing myself to eat.  Any amount of food does make me feel better, and I know that getting into a routine of, well, eating, is good for me long-term.  Profound, yes?  And not from the synthetic cannabinoid!

During all of this, a surprising number of friends and family members offered me specific things one could eat that might help with hunger.  With the failure of the marinol, I am retracting my polite declines of those offers.  Likely best if we left it there, but if you were one who a) has an idea of what I am saying, and 2) might have something that could be useful and 3) would be willing to part with said useful thing, text or call me.  Probably best to call.

The MRI Conclusively Showed...

...that:
1) there is still brain in there
2) there was no accidental chlorine spill (I only thought that for a hot second)
3) things didn't get worse
4) (and this is as concrete and optimistic as the Radiator would get) the tumor looks stable and "I think it even looks a little smaller." Calm down, doc!

Certainly, I had already downgraded my expectations for this first result. The Radiator and the Extender both thought this was all very positive. I just have some trouble getting really excited about "things aren't any worse!" Yay.

Yes, time and countless other MRI's will tell the tale. Three years from now, "things aren't any worse" is likely amazing news. But it's a slow growing tumor, and my nagging question is "would the MRI show more-or-less the same results even if I hadn't done the radiation & chemo?"

To anticipate one of my many doctors: "possibly. But radiation and chemo has proven to be effective in stabilizing tumors like yours, and we will monitor you with MRI's several times a year to ensure that we know when it no longer is stable." 

Well, fuck you very much, you amalgamation of non-committal doctors I just created.

I am also excited that I may actually reach my one very random, very stupid goal. I have not been under 200 pounds since likely 1996 (March 17th, 3:29 am - don't ask). My chemo diet had me within spitting distance (admittedly, it would be a LOT of spit - 1.2 pounds to be exact), till I found the proverbial corner, turned it, and only 67% of my food tasted like straw. Got back up to 203 pounds, stupid goal slipping away... Well, I re-started chemo, and will be on it for six months (a week on, three off). And the straw percentage ramped back up to 91.5%. Bring on the stupid goal! I will get your respect, Strava!

And once I get there, I now have my next stupid goal.  Likely you've already figured this one out. 

Can one actually generate 1.2 pounds of spit?  Seems like a question for Mr. Owl.

Does Brain Tumor = Unsound Mind?

I have discovered so many things that having a brain tumor prohibits me from doing. Driving, of course. At least for now. Depending on the day, seeing objective reality. I’m hoping that’s done. Growing a mullet. Wasn’t a goal, but it’s now off the table.

One thing that a brain tumor doesn’t hinder, apparently, is jury duty. Travis County thinks I would be a useful cog in the wheels of justice. Do wheels have cogs? And having done this before, it’s more the wheels of very pitiful misdemeanors.

My last journey into the wheel cogs of civil misdemeanor justice was being on a Travis County jury six years ago. Some drunk moron (it’s in the trial transcript) mouthed off at a cop while in line for a bar. He had an open beer in his pocket and was so drunk he vehemently denied said beer, which was clearly there. Still would have been fine, except he decided to say stupid things to the police, which got him a charge of public intoxication. Maximum penalty - $200 fine. But this genius needed his day in court. So seven jurors spent a day off work to provide him that opportunity. Add in the judge, prosecutor, court personnel, and even the police officer who recounted said drunk man with open beer in his pocket, and the cost to Travis County, including lost productivity, was around $8,914.62. All for the possibility of a $200 fine.

We found the idiot guilty, and assessed a $1 fine. You might get from this that I don’t like jury duty. I do. I love being civic. A perfect day for me might be a walk on a civically funded hike and bike trail, followed by jury duty, and then a trip to the library.

But it has been a tough summer. So I admit I looked on the summons for an out. I am a citizen. I’m registered to vote. I can read and write. I (think) I am of sound mind and good moral character. Even with the tumor, I feel fairly confident in my morality.  There was an out for medical reasons, but you need a doctor’s note. I have so many doctors, and they seem to be in flux, it didn’t seem worth getting my medical records, finding a notary, and submitting to the County exam. So I went on-line and signed up. I am set for late September. Might need a ride.
Then, yesterday, two weeks after the jury duty summons, I got a letter from Travis County. I thought it was a helpful paper reminder. No, it’s a jury summons. I am hereby ordered to the same damn thing three days after my scheduled jury duty.
Certainly, there has to be an out in this situation, right? But using my non-diminished reading skills, I realized that there is an exemption only if you get impaneled. So they can keep calling me. I could theoretically get a summons a day until I actually get on a jury. Which might lead to me trying to get on a jury, which certainly would be evidence of bad moral character, yes?

The After Before

My after is about to end.  And I was just starting to enjoy it.  Kinda.  About 10 days ago, the world returned more or less to its expected movement.  It took several weeks and happened in fits and starts.  Little by little, the bonus effects have gone away. Tapering off the steroids helped me start to sleep past 4 am.

I started walking a bit.  Then riding a bit.  Still early in getting back into riding shape.  I pulled out from the MS 150 in early October, but still plan to do the biking part of the 1/2 Iron Man in late October.

I’ve pushed back any thoughts of driving to at least October.  I think legally I probably could now (past 3 months since my last recognizable seizure), but I want to be way past my “acid trip month” before I even try.

I did return to mostly normal life, albeit without driving (but with unnecessarily complicated words like “albeit”).  I traveled to Dallas last week for work, flying and Lyfting.  I started teaching Thursday night.

Side note on my Lyft experience, generally the rides have been great - fast, a minimum of questions, efficient. I do have to say that the last one, with Donovan, from the Austin airport to home, was the outlier.  When I was getting in the back, he said “no, you can sit up front.”  Um, ok.  Up front with the unpleasant music, and the blue strobing light that flashed to the unpleasant music beat.  Donovan asked me about my job, talked about the weather, Austin, traffic, road construction, and football, and this was all before we got out of the freaking airport.  It did not get any better the rest of the way.  On the plus side, Donovan got me home in 15 minutes.  I live about 22 miles from the airport.  There is no way the drive should have taken only 15 minutes.

One thing that hasn’t gotten better is my appetite and how things taste.  Which is bad, and like straw, respectively. My interim doctor is prescribing me something for the appetite part, with a very spot-on name.  Something like “Marijuananol”.  Looking forward to that.

Dr. V left Austin Cancer Center, leading to a complicated dance where I have a new doctor there for a minute while Dr. V gets settled at his new place.

So, my after is making progress finally.  So, of course, it ends today.  I re-start chemo tonight, going to double the dosage but only five days a month.  When they told me this, for some reason, I thought it meant once a week.  It’ll actually be five consecutive days, with 3 weeks off after.  Lather, rinse, repeat for 6 months.  Not sure why I thought it would be once a week, or why that even matters.

I had the after MRI Thursday to see how the first round worked, and will find out Wednesday, during my next During. Not sure what to expect or even hope for - I am guessing there will be no dramatic change, good or bad, at this point.  So I have just a few more After hours, then I am back to the During. A few pictures from my brief After.

This is from my Thursday MRI, which likely won’t tell me much.

The blue socks in the middle are from the MRI. I promise at the end of this I will donate a crap ton of socks to the homeless. I needed these. They are warm and non-slidey and blue. And came to me in that tiny window when I felt like the After could actually eventually become the Before, but just a few days before the second During, which starts in about an hour. Sigh. And one bonus picture. Not driving leads to walking (and sporadic bus riding). On a walk to lunch a couple of weeks back, I came across this planter in the strip mall next to Galaxy Theater (near old Highland Mall).

It’s hard to pinpoint what killed this plant. You might think it would be the alcohol, but it seems to have been drinking just a little at a time. Possibly it’s the popcorn, though my money is on the smokes.