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And I was not magnificent

As some of you have no doubt heard through the grapevine (and others no doubt have not), I got my first post-chemo MRI yesterday, and the results were not good. They found tiny dots of cancer in the area where the tumor used to be, and, much scarier, they also found tiny dots of cancer on the other side of the well of spinal fluid in the center of the brain. That's a new location. My neuro-oncologist isn't sure whether it was still in the area hit by radiation, or on the edge of that, or outside the radiation treatment area entirely. Determining that is one of the first things she wants to do, because it will help her decide whether to advise me to get further radiation treatment or not.

Further treatment of various kinds is definitely going to happen. They are pushing to get me onto an IV drug called Avastin, which is the standard treatment for when GBM returns after the first-stage treatments. I don't fully understand how Avastin works, but I believe Dr Taylor said it attacks the blood vessels in the cancer. It's injected every two weeks, and if they can get it approved by my insurance company I'll take the first dose on Friday. Supposedly the most common side effect is elevated blood pressure, but there's a whole list of horrific side effects that are less common. The blood seeping out of my left nostril this morning is likely because my platelet count has crashed, according to the nurse I just talked to.

None of this was what I was expecting to be facing when I went in for the MRI and consultation yesterday. I thought I was going to be told that I was done with treatment (other than the Optune) for the foreseeable future. Instead I was essentially told that the past fifteen months of treatment didn't work, or was only a temporary restraint, and now we get to try some different treatments. The immediate goal is to prevent the tiny dots of cancer from growing and spreading. If that happens, there's danger that I will start to lose my cognitive abilities and physical coordination and/or start having seizures again. The hope is that we can stave the cancer off long enough for me to make my long-anticipated trip to Yap in May.

Probably needless to say I'm feeling deeply discouraged. All the talk of surviving onto the long tail now seems like a complete fantasy. Now I need to ask my friends to let me know if they observe me acting in an erratic way, and life begins to seem like a race against the cancer eating into my ability to think and communicate. If I can make the trip to Yap, I'll likely be trying another form of chemo when I get back. As for radiation, not only do I really, really NOT want to do more radiation, I question whether there's any point, considering that I've got cancer in the area they treated previously.

Ah well, no reason to worry myself to death right now. There's time to figure out what the next steps are, but I am, as the Little Feat song has it, sore displeased. Sorry to bear these bad tidings.

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( 15 comments — Leave a comment )
kate_schaefer
Mar. 23rd, 2017 04:53 am (UTC)
Damn.
randy_byers
Mar. 23rd, 2017 02:42 pm (UTC)
You can say that again.
kdotdammit
Mar. 23rd, 2017 06:22 am (UTC)
I saw this on FB and I'm so sad and mad. I am making every effort to get up there in July. I hope you will be there so we can go to a movie, my treat. All my blessings and power love Randy.
randy_byers
Mar. 23rd, 2017 02:42 pm (UTC)
I'm looking forward to it!
kdotdammit
Mar. 23rd, 2017 05:39 pm (UTC)
Me too! I'll be making plans soon and let you know. It's looking like late June.
rosegardenfae
Mar. 23rd, 2017 01:36 pm (UTC)

So sorry to hear this, it just plain sucks. HUGS

randy_byers
Mar. 23rd, 2017 02:43 pm (UTC)
Thanks, Granny Fae, whoever you are. I appreciate the sympathy.
voidampersand
Mar. 23rd, 2017 02:13 pm (UTC)
I'm sorry you have to deal with this. Not fun.
randy_byers
Mar. 23rd, 2017 02:45 pm (UTC)
Fortunately my friend Kristal drove me into the snowy mountains yesterday, which was a lot more fun than sitting around the house feeling sorry for myself. It was a blast, in fact. Just the escape I needed.
profgeek
Mar. 24th, 2017 12:31 pm (UTC)

After so much work and progress, this is such a gut punch. You deserve better than this. Take a walk, hang out with friends, and so on. I look forward to seeing you again, hopefully later this summer or fall.

randy_byers
Mar. 24th, 2017 03:24 pm (UTC)
I start Avastin today. Let's hope it works bettter than the fricking chemo!
llcoolvad
Mar. 24th, 2017 07:17 pm (UTC)
I am so very sorry to hear this. It sucks so badly! I hope you are blissfully side-effect-free on the Avastin and that it works perfectly!
randy_byers
Mar. 24th, 2017 10:13 pm (UTC)
I live in (somewhat discouraged) hope.
holyoutlaw
Mar. 26th, 2017 06:15 pm (UTC)
LJ just sent me a notice about this post.

Anyway, rereading this makes me sad again. If there's anything I can do to help distract you, just let me know.

I might have a gap between gigs, which means a little more time for hanging out. Let me know if there's anything I can do.
randy_byers
Mar. 26th, 2017 06:35 pm (UTC)
Thanks, Mr. Outlaw. I posted something new today, in which I mention that Kristal and I are going out to the Olympic National Forest next week. If ocean and rainforest can't divert me, nothing can!

Meanwhile, movies have been slim pickings lately.
( 15 comments — Leave a comment )

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