March 14, 2013 (Thurs) – To benign or not to benign: no longer the question

OK, gonna leave you hanging; otherwise you won’t read the rest of this wonderful diatribe.

Yesterday was fairly uneventful. And the reason why there was no post last night. The fact that I fell asleep on the chair in the den at 8:30 had no bearing…yeah, right. They said that radiation therapy might leave me tired, so that is my excuse and I am sticking to it.

Being uneventful is saying something considering we’ve felt like a human Pachinko machine every day for the past couple of weeks. You never know where you are going to end up. Or as Forrest Gump would say, “life is like a box of chocolates, you never know what you’re gonna get.” Just didn’t realize my box would have some rancid almond nougats. I find myself cringing every time a doctor calls me the afternoon after a morning scan of some kind. Good thing they are not measuring my blood pressure at that point in time.

So today was not that much different in that regard. Had my brain scan MRI this morning. Didn’t get the Close Encounters of the Third Kind version this time. It was more of Chinese water torture (sorry, probably not PC) with a single “bang” repeating over and over. For a much longer duration this time. Of course I can’t complain. As per my M.O., I slept through most of it. Yes, really. I take after my grandfather who could fall asleep standing up. I didn’t realize that my normally embarrassing personality quirk would come in handy some day.

So, on the way back to work from my Rotary luncheon, I got a call on my Bluetooth. Who should it be but my pulmonary doc, the one who, to-date, is 4 for 5 with bad news when she calls. I was a bit afraid I’d cause an accident by wincing in traffic. She actually was just calling in to check up on me as apparently she was not exactly aware of my treatment schedule. And she wanted to set up a lung x-ray once all of my radiation treatment was complete to see how effective it will have been. Teaser alert: she left the good/bad news to my radiologist for later in the day. But now she is 4 for 6 so her average is coming down.

As for the oral medication (Tarceva) that I am scheduled to begin shortly (more on that later), I received the first 30-day supply yesterday. I had them ship it to work because if they just left it at my house, we would have been responsible for the value of it had it disappeared. Well, knowing this was something of a specialized medication, I thought it prudent to have it shipped to work where someone would sign for it. I had no idea that it should have been delivered in a Brinks armored car. The lady on the phone told me my co-pay through my wife’s insurance (thank you SDUSD!) was $40 for the 30 pills. However, if I had no insurance, here’s what the bill would have been through the Costco pharmacy, usually one of the least expensive sources for medication. (Click here).

$6000+! I was totally floored. I was thinking maybe a few hundred dollars. That is $200 a day (per pill). $72K smackers a year. Are. You. Kidding. Me? I’ll take my $1.33ea thank you very much. It must be golden. I’m keeping that bottle locked up and hidden.

OK, this afternoon I went in for my third daily dose of Madame Curie juice. I now have an inked box on my chest that looks like it was drawn by a 1st grader with a Marks-a-Lot. Prior to the zapping, my radiologist caught me and pulled me aside for was was obviously a good news/bad news talk. Trust me, I’ve gotten really good at reading the body and verbal language. So the good news is that I still only have the single tumor in my brain. You know where this is going don’t you? The bad news is that we have assuredly answered the question as to whether or not is was benign because it is now twice the size it was two weeks ago. Can you say Pachinko? This apparently does not change the upcoming treatment regimen of 5 straight days of brain zapping starting Monday. He just has a bigger target now.

Speaking of radiology, their office is located on floor “zero” of the medical building. Not the basement, but floor 0. Reminds me of a few Twilight Zone episodes where the elevator goes to a floor that nobody knows about. Cue Twilight Zone theme song. Guess they don’t want to have a basement in a medical building as that brings up all sorts of connotations as to what should be located there.

I also may not be waiting to start the oral medication since the radiation is only aimed at the main lung mass and is not addressing the other parts of my lung or the additional hot spots the PET scan revealed. So there does not seem to be a good reason to wait but I will confer with the USCD specialist tomorrow to get her input before I drop acid, er, the pill. May have to buy those Depends sooner than I thought.

Tomorrow is a fun day, at least after I have a morning lung toasting. I will be playing in a golf tournament as a fund raiser for my wife’s school. I’m really looking forward to it. But since that brain tumor is located in a place that oversees motor control, I have a built-in excuse for when my shots go astray, as assuredly they will. Hey, I never said I was above pulling the “C-card.” 🙂

Business as usual. Day at a time.

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4 thoughts on “March 14, 2013 (Thurs) – To benign or not to benign: no longer the question

  1. Craig……The Summerbridge meeting went very well at Qualcomm. The Board was obviously shocked at the news and then your ears would have smoldered. …..another group of ardent, inspirational cheerleaders. We’re open 24/7 and a few steps down the well worn path. You know what’s in the ice box and our warm hearts…….Zeke

    Reply
  2. Craig – although I hate the reason why you are writing this blog, you are doing an incredible job with it – thanks for keeping us up-to-date…I marvel at how you can remember all the minute and complicated details of the medical world. Your sense of humor can do nothing but help tremendously in this fight. (P.S. I’m glad the cost of this medicine is not a line item in our budget at work – thank you, insurance!)

    Reply
  3. Craig – I really appreciate these updates . . . they help your many friends more than you’ll ever know. I and so many others will keep the prayers coming your way.

    Here’s hoping you don’t wind up slicing in your golf tournament!

    Reply
  4. Well, friend. Just found out about your, shall we say “predicament”. Hard to know what to say except that you know you are in my thoughts. And, just like all the others you’ve touched, you can count on me for ANYTHING! I have lots of time on my hands at the moment so if you want to get together, let me know.

    Love Ya – Candi

    Reply

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