Wednesday, March 1, 2017

Latest lab results...all good. Plus an interesting side effect of Zometa.

Hello, friends! I hope that this blog continues to be of interest to some, even though updates are less frequent. Live chugs along, with family, work, good wine, bad golf and music. And in the background noise there is my diagnosis, not yet completely excised from my life but relegated to a minor role at this point as I continue to wait out the 10-year "all clear" whistle that will arrive in September, 2019.

On that note, most recent labs are negative for myeloma and everything looks good. For those into super detail, my IgM (one of the protein types that gets clobbered with transplants) remains low and may never recover, but IgG (where my bad protein resided) and IgA are normal and my immune system appears to be working fine.

I have spent the last couple of months in a state somewhere between inconvenience and agony from what turns out to be a pinched nerve. It came out of nowhere in December before a family trip and it effectively sidelined me from what was to be a full week of activities in Hawaii. It was actually pretty painful, requiring serious painkillers to get even 3-4 hours of sleep. Tests indicated it was a nerve with the likely culprit being C5-C7 vertebrae, and sure enough the MRI showed two bulging discs pinching the nerve there. The only real solution is time and physical therapy, unless I was spinal surgery which I was advised against since it only moves the stress to other vertebrae, and limits range of motion.

Bear with me, as this has some useful information for those on bisphosphonates...

So I learned that nerves don't just sit there in your body -- they are directed through the body through "ports" in bones near the spine (presumably the shoulder area). When the body moves, the nerves need to be able to slide freely through these ports. I've got bilateral narrowing of these ports -- from the bisphosphonates. It's not a problem on my left side, but on the right side, it's an issue, and combined with inflammation from the irritated nerve, it's accentuating the issue with the pinched never. Something to consider.

There are all among the "high class" problems that I waved away at the time of my diagnosis, and I continue to be very thankful that I'm worrying about such trivialities.

For the moment, I'm on anti-inflammatories, plus Gabapentin for nerve strength (odd that I never took this during primary therapy, but I was fortunate and never experienced much neuropathy). This, plus the PT, will hopefully be enough to set things right.

I plan on returning to Mt. Sinai in late June or early July for my next follow-up with Dr. Barlogie, who is now licensed to practice in New York, which is terrific. I will likely have another set of labs to report on in the meantime. Otherwise, steady as she goes!

I continue to be thankful for the opportunity to counsel others with Myeloma; I still speak to anywhere from 5-10 patients a week. Please reach out to me if you need help!

Monday, January 16, 2017

RIP William Peter Blatty -- and the Devil in the Details

Hello friends, and Happy New Year.

I'll post sometime soon about the pinched nerve issue (more painful than it sounds) emanating most likely from my C5-C7 spine. I've seen issues on MRI before but they've never presented symptomatically until about a month ago. But that's for another post.

I was struck by the recent passing of William Peter Blatty, a name which may only be peripherally familiar to some. He was the author of The Exorcist. He died at the ripe old age of 89 years. It was from Multiple Myeloma, and he evidently went from diagnosis to death in about three months. 89 is a long life to be sure. Nonetheless, it does tickle the viscera unpleasantly to hear about Myeloma as a cause of death.

For those that don't know, it may seem ironic that Blatty was a devout Catholic. The book, with all of its horrific and blasphemous material that was brought to life in what I still think is the most terrifying film ever made, was denounced by some as evil and most likely is to this day by a subset of the religious right (I do my best not to travel in those circles so I'm not sure but it's a pretty safe bet). And yet Blatty's stated purpose in the book was to bring people to God. By exposing people to the reality of evil and the horrors of the Devil, they would be introduced to faith. They would be shocked and frightening into considering the possibility of God. And if one looks at the movie, beyond the vomiting pea soup and the spinning heads and the terrifying appearance of Regan McNeil, the story is fundamentally about Father Damien Karras, who lost his faith and regained it in the face of evil. This story was continued in the true sequel to the book, Legion, which was made many years after its publication into the true sequel to the movie, Exorcist III, with George C. Scott taking over the role of Detective Bill Kinderman, who was played by Lee J. Cobb in the first film (funny -- maybe having an important middle initial was a critical element in the casting decision). In that film, just like Karras did in the firs tone, George C. Scott finds belief in the face of evil.

I wrote in this blog during my treatment about this concept known as the Noonday Devil -- the voice whispering in one's ear that the struggle isn't worth it. I wrestled with that at one point where I wasn't seeing the progress in the therapy that I was hoping for. I managed to get through it -- I was fortunate (or blessed, depending on one's spiritual inclinations or lack thereof) that I responded to therapy and put this behind me. It was an important enough moment that I wrote a song about it for my band's 2011 record This Mortal Coil. And at the beginning of that song, there is a sample from the Exorcist III.

So while I started this post thinking William Peter Blatty's death was of interest because of Myeloma, I'm ending it realizing there may be a deeper connection.

So as not to be too heavy, I'll end this with a very funny little anecdote that I recently learned of from a friend of mine. It's Blatty recounting an experience he had shortly after the publication of the book and it's hilarious.

When I worked at BMP, the Head of Television commuted in from Brighton every day.
He started reading The Exorcist on the train.He said he thought it was the most evil book he’d ever read.If fact, he said it was so evil he couldn’t finish it.So, at the weekend, he went to the end of Brighton pier and threw it as far as he could.So I went to the bookshop.I bought another copy.Then I ran it under the tap.And left it in his desk drawer.For him to find.