Wednesday, May 15, 2013

The Return of Wine, and Other Silver Linings

Let's start with some good news. For the last few days I've been able to reintroduce wine to my daily diet, with no intense headaches. It's not that I've found some herbal preventive or some magical cure for a pounding frontal lobe. No, the reason is far simpler than that. I've stopped using Stivarga. It wasn't working.  I've talked with Dr. Z about what to do next, and we've decided to explore some clinical trials of some novel immune-system therapies.  We still have in our back pocket, as Dr. Z likes to say, a combination of chemotherapies I like to call the nuclear option. It's basically everything I've done before, delivered all at once every 14 days. Sounds like fun, right?

The clinical trials are for a class of drugs called anti-PD-1. I asked Dr. Z what "PD" meant and he claimed he couldn't recall. Naturally, I Googled it and learned that it stands for "Programmed Death." I'm not kidding. At least it's anti-Programmed Death, because a pro-Programmed Death drug probably wouldn't sell very well. I think the term refers to cell death, but I can't be certain.

More good news is that the trials will likely allow me to get to know some fine East Coast city far better  than I already do. That's because there are no relevant trials going on at Emory, so the best options are MSKCC in New York, Johns Hopkins in Baltimore, and maybe Vanderbilt in Nashville. There will likely be frequent visits, and possibly some extended stays. I'll know more over the next couple of weeks. 

But wait, there's even more good news! I don't have a hip injury, arthritis, or some other joint disease. No, the source of my increasing discomfort is... the cancer that we wiped out in my pelvis over two years ago. It's no longer active, but it left its swiss cheese-like mark on the left sacro-iliac region, per Dr. Hall, my new orthopedist. He thinks I can get some relief from physical therapy, but not just any PT will do. "Look, I own the PT clinic down the hall, and I can make money off you by sending you there," he told me today. "But I'm not. I'm sending you to another guy who does some weird stuff, like Mr Miyagi." 

The best part isn't that I may get to meet Pat Morita's double.  It's that this PT guy has a couple clients even more famous than me. In fact, they were mentioned in one of my recent posts. Want a hint?


That's right, the same hands that keep limber the extremities of the world's greatest metal band for those wicked guitar and drum solos will soon be helping me get back to my old self (fully capable of sitting in the car free of agony, able to jog short distances at an old man pace, etc.).

See, this post was full of good news, wasn't it?

Friday, May 10, 2013

Ever Been Buried Alive?

When you schedule a scan, be it a CT, MRI, Bone Scan, or PET, they always ask, "are you claustrophobic?" "Not me," I always say, with a verbal swagger.

Well, after yesterday, consider my swagger muted.

Yesterday began with an 7:00a MRI of my hip at Emory University Hospital. I've had fewer MRI's than each of the other aforementioned scan types, so I'd forgotten some of the details of the procedure, such as how long it takes, and how friggin' tight the hole is in that machine.


This picture gives you a feel for the contraption. It's about 4 feet deep, and to get a good view of my hip, I was slid in to the point where my upper lip was even with the outside edge of the machine.  My head was on two pillows, and I had on some bulky headphones to help drown out the noise from the magnets and motors buzzing around me.

I wasn't strapped down per se, but I did have the plastic plate pictured across my waist, and it was strapped to the table. They told me I was allowed to move my arms, but once I was inside, there wasn't room for me to do so.

Importantly, I also had a panic button in my right hand. After the first two Eagles tunes finished playing through the headphones (via the Pandora Classic Rock channel), I began to feel a little uncomfortable. An Aerosmith song later, I tightened my grip on the panic button. When a Don Henley solo track finished, I was in a full sweat, and my mind kept wandering back to the season finale of The Following, in which an FBI agent is buried alive.  SPOILER ALERT - she dies.

Finally, I hit the button. An angelic voice from the control room asked me if I was OK, and I replied in the negative. She explained to me that I was 1 minute into this particular scan and I had 4 minutes to go. I closed my eyes, swallowed for what I imagined might be the last time, and said I could make it 4 minutes.

She stayed with me, like a 911 operator, until the scan finished, and she rushed in to slide me out. "How much longer?" I asked. "15 minutes," she answered. I'd been in about 25. She let me stay out as long as I needed, bringing me a cold washcloth and some water to sip. We ditched the bulky headphones, repositioned the pillows, changed my arm position. Then she gave me the thing that anyone who's been buried alive would tell you they wish they had... an oxygen tube. I was able to use it as a mini-fan, blowing it on my face and neck for the next 15 minutes while we completed the scans in two 7 1/2 minute sessions.

Note to self -  next time you need an MRI, ask for the oxygen line before they slide you into the coffin.

Wednesday, May 8, 2013

Mister Eye

When Toyota made a 2 seat, mid engine coupe called the MR2, the car magazines began calling it Mister Two. So I've decided to call the scan I'm having on my hip tomorrow a Mister Eye.

Hopefully, Mister Eye will tell us what the source of my continued hip pain is. I will keep you posted.

I wanted to take a moment to talk about stem cell transplants. This is a procedure used as an extreme measure when certain types of cancer aren't responding to other therapies. It involves basically shutting down the immune system and rebuilding it from scratch with stem cells from a healthy donor. All of this takes place in a Travolta-esque bubble of a hospital room.

I have two friends, one who had stem cell treatment several months ago and one who is just starting. Bob just got the news all of us Members of the Club long to hear, "No evidence of disease." I hope I report the same for Mac before the maple leafs have fallen in his native Ontario.