November 23, 2014 (Sun) – The Good, the Bad and the Ugly

Actually I’m more of a Star Trek nerd than I am an aficionado of old westerns. Although I never missed an episode of Gunsmoke when I was a kid. But only the Dennis Weaver as Chester version. Just call me a purist. However, I’m not as much of a Trekkie as my wife thought when, years ago, she bought me a Star Trek Murder Mystery party kit where all of the attendees were supposed to dress up in in full Shatner-like regalia. Uh, I wasn’t ready to come out of the beam-me-up-Scotty closet to that degree. My wife thought for sure this would be the ultimate gift and was sorely disappointed when I rejected it.

So why I am using an old spaghetti western movie title for my blog? And how the heck did the word spaghetti get mixed in with a macho western with Clint Eastwood? You might as well have a rigatoni SciFi flick. But all these questions and more will be answered in due time below.

ClintThe Good: I’m not sure anyone that talks to an empty chair should be the icon of this section. But Clint played the part in the movie so I need to remain true to the craft.

Friday I got back the results of my CT and MRI scans I had this past Wednesday. In short, neither scan showed any change from the prior ones done 6 weeks ago. I especially like terms used like unremarkable, normal, no evidence, unchanged and stable. All of these phrases were used in the written synopsis I got. In my world that means no progression, which is 2nd in favorable results only to “additional shrinkage” which unfortunately was not a term used. But I’ll take it. That keeps me in the trial.

TheBadThe Bad: Note the italicized phrase above where the results indicated no change from the prior ones done 6 weeks ago. Therein lies the rub. Remember there was some disagreement on whether my last brain MRI showed anything or not. Well, the latest higher def version did verify that there is something there. Exactly in the same place it was a year and a half ago when I had radiationBrain MRI Nov 2014 zapping to nail the sucker. In fact the write-up calls it worrisome. Worrisome for who?! Certainly not the guy writing up the report. My radio-doc is certain that it is a fuzzy bugger coming back since it did not appear on the scans until recently. Fuzzy bugger? Sorry, hope you weren’t eating. But he gave me two options: reprise my role as a zapee and don the silence of the lambs mask again and blast the bad guy. Or wait until my next scheduled scan at the end of December (New Year’s Eve to be exact) and see where it stands then since it did not appear to grow since the last scan.

Ah, but there is a catch. Since this would be radiating the exact same spot as before, there is the risk of permanently damaging already battered tissue in that area. Supposedly, if memory serves (which it hasn’t lately), that part of my brain controls various motor skills. Which one(s) though I’m not entirely suretsdgvklrewjk. Oops.

Door3So I chose door #2. While thinking that this little fuzzy might be spreading its wings for the next 6 weeks is a little disconcerting, since it hasn’t apparently grown for the past 6 weeks, the chance of it becoming ginormous in that short period of time is not really a concern. Wait a minute. Fuzzies have wings? Hmm. But there still is the slim chance that this little bit of nastiness could be an artifact from the first radiation that is now dying off and showing up. My wife, concerned about waiting while some alien was growing in me, asked me to call back the radio-doc and ask him what he would recommend if it was his brother who had to make a choice. He concurred with my decision. In any case, I may be getting a 2nd opinion from USCD.

CraigFrizzThe Ugly? That would be me. Not sure if the A-Team (my trial drug AZD9291) causes any hair issues or whether my follicle challenges are left over from Tarceva. But I have to essentially glue down my hair in the morning in order for it to have any semblance of control the rest of the day. That usually lasts to about noon and then it goes all Don King/Lyle Lovett on me. I know some of you are going “yeah, at least you have your hair.” Point taken. But I will be having the last laugh on Wednesday when it hits the chopping block. Take that gray boys. The picture to the right is obviously not real since it has the wrong hair color…

As for the trial, I am now in the next phase of my treatment where I only have to go in every 6 weeks. At my next checkup at the end of December I will also have all of my scans, and, wait for it, another knuckle-noogie echocardiogram. Can’t wait. Not.

CorksNo, these are not all Rombauer corks. Don’t I wish. Actually this is just a collection since I had my scan results last week. OK, more Wine Coolerlikely since my diagnosis 20 months ago. Alcohol is a disinfectant, right? Kills germs? But we (OK, my wife) just invested in a new toy that should help us populate this giant glass vial even quicker than we already are. Holds 21 bottles. Notice the blue caps on the end of the three bottles near the top? Yup. Rombauer. You know, I should send my blog off to Rombauer Vineyards. Maybe they’d send me a case for all of the free advertising I’ve given them in the past year and a half. Hmmm.

Syringe PenIf you’ve been following along, you know that I appreciate fun humor when it comes to my situation. So recently I received this unique writing implement from someone at work. With my 2x daily Love-shots and regular blood tests, this device is way too familiar. Haven’t brought myself to drain any of its liquid yet. Seems a little perverse. But I’ll get there.

I know I’m supposed to be trying to reduce my overall stress level. Yet, if anything, it is going up. Lots going on at work right now and I still maintain my weekly volunteer trips to Rady Children’s Hospital and a south-bay elementary school for my first grade science experiments asPaperwork part of my Rotary involvement. Those second two items actually work to reduce the stress tho. And I’m on the board of two non-profits. In fact, I haven’t really had any time to catch up on my own pile of paperwork at home. So dialing it back is not much of an option at the moment although I do see some light sneaking over the horizon. And perhaps I artificially ensure I am kept very busy so that it takes my mind off possible fuzzies and self-convinces me that is truly is business as usual. Only Freud knows. Nobody said I was a brain trust.

Spock_vulcan-salute

 

 

 

Live long and prosper. Yup, that’s the game-plan.

Business as usual. Day at a time.

November 6, 2014 (Thurs) – Hey Baby, What’s Your Sign?

sketching-people-barIf that is not the worst pickup line ever uttered, I’m not sure what is. OK, maybe “I forgot my phone number, can I have yours?” might come close. But tonight’s post is not about how to pick up girls in a bar. However, if you want to know how to pick up someone at the beach, just ask my wife. She did a damn good job of it 36 years ago. And you won’t hear me complaining since I was the pickup-ee.

In an earlier post, I compared my journey to various amusement park offerings. Roller coaster ride? You betcha. Wheel of Chance? Oh yeah. But in thinking about it some more, there are also lots of connections between everyday traffic signs and the directions my travels have taken me in the past 20 months. Each of the signs below will refer back to one or more of my earlier blogs, so feel free to click on the sign graphic to refresh, or if you are a recent reader, fresh, your memory. Thusly:

Buckle upExactly. Little did I know when my fam-doc called me back in the afternoon on that fateful day that this would epitomize my journey. His diagnosis bombshell caught everyone by surprise and it has been nothing if not a wild ride ever since. And you know me, I always wear my seat-belt. Good thing too; otherwise I might have been thrown off this roller coaster with results I don’t want to think about. I must admit, it does feel like it’s been at least a half million miles.

YieldInitially I had to yield to the truth that my life would be permanently altered by this surprise diagnosis. I also had to yield to the radiation zapping to my lungs and brain. And later my hip. Lots of yieldin’ going on. Kinda like the Charger’s defense…

Up DirectionNo lookin’ back. Fergitaboutit. Only one way to go and that is forward. Longing for the days BC (before cancer) does not help me cope as I wind my way around this crazy journey. Sure, I’d love to have never heard of Tarceva or AZD9291. But I know more about those two life saving/extending drugs than most. And I’m very glad to have made their acquaintance. Very glad indeed. El gusto es mio.

speed-limit-70Initially, with the success of Tarceva, it was full steam ahead. Max out on the speed limit. For 9 months it was a pretty straight line, zig-zagging only to deal with side effects that cropped up. Zits, big-D, dry skin, ants crawling in my scalp, and all of the other little presents that Tarceva donated, were but potholes on the freeway. Enough to make my head go up and down like a bobble-head doll in the car’s rear window, but not enough to flatten any tires.

end freewayBut a little less than a year ago, I ran out of road. And I did not see the “freeway ends in 1/2 mile” sign like you would normally get. My initially diagnosed “arthritic” hip turned out to be a resurgence of fuzzies in that locale, along with, careful now, my sacrum. As you know, not to be confused with scrotum. Fuzzies in a scrotum brings to mind a whole different image. OK, now I know I have you chuckling.

caution-detourSo yes, I had to slow down my speed and make a detour and pull over into a rest stop. While there, I gave up the last remaining vestiges of my modesty with the hip radiation. But my treatment ended on New Year’s rest areaEve so I was starting 2014 off fresh, yet knowing that Tarceva was a tire that was slowly losing air.

speed bumpsDon’t these drive you crazy? Moving along at a nice little clip and whoop, you bottom out on one of those speed bumps they forgot to mark. I was rolling along, maybe not at 70mph roadblocklike before, but more cautiously, while looking over my shoulder for potential obstacles and looking ahead for any additional detours. Well, looky here, a Tarceva dead end was approaching. Getting the phone call that multiple mets (no, not the New York sad variety) had reared up was pretty hard  to swallow. Kinda like that whack-a-mole game I described earlier. Only this time multiple heads popped up at the same time making it difficult to nail them.

circular-intersection-sign-clip-artFor a long time the course to take was not very clear. Not clear at all. Maybe this clinical trail up in L.A. Maybe the one in Irvine. Maybe none at all, instead diving right into some chemo cocktail. All the while the road grime was eating into my undercarriage. OK, maybe that was not the best, or most appropriate, analogy. But it was very difficult knowing Tarceva was no longer my hero and I was doing nothing else to stem the fuzzy tide.Soft Shoulder

In the meantime, my wife was a rock. Maybe not on the inside but she never really let on. So this was one highway sign that provided some comfort. I needed all the soft shoulders I could get. While she provided the real one, all of you provided a virtual electronic one with your constant words of encouragement. Thank you.

SpeedodometerSo, as you know, things have worked out and I am back on track with the A-team (AZD9291) doing its thing. And a good thing it is I might add. So the speedometer has crept back up. But I am also watching for potholes, detour signs, debris in the road, etc. To aid in that endeavor, I will be having my next set of combo (brain MRI and below the neck CT) scans on the 19th. Hopefully they will see a nicely paved road with no fuzzy rocks strewn about. It will be good to get clarity after that last MRI that maybe, perhaps, possibly, per chance, showed something. Or maybe it didn’t. We shall see.

Business as usual. Day at a time.