Dystonia; It's Not The Name of a Former Soviet Republic

An annoying effect of my benign (thank heavens) schwannoma tumor is a condition known as “dystonia”—uncontrolled muscle movements and contractions—in my left arm and hand. My dystonia tends to manifest itself at inconvenient moments, like when I’m trying to open a fine microbrew, tee off, or use a computer keyboard.

As mentioned in my first blog post, the docs initially suspected that the large mass that showed up on my first CT scan following the initial melanoma diagnosis was a melanoma tumor that would knock me off rather quickly. So, whenever the dystonia fires up I try to first remind myself how fortunate I am to have a schwannoma tumor rather than a melanoma tumor and that the dystonia affects only one appendage. Plus, I’m right-handed. My guess is that most every carcinoma veteran tends to measure any subsequent physical affliction against past experiences with “The Big C” and often concludes that, comparatively speaking, maybe this new thing ain’t so bad. Perhaps this perspective we bring to nearly all other challenges in our lives is one of the many blessings of having survived cancer to date. Still, I must confess that I all too often whine a bit about the problem. It hurts. Maybe I’m just another spoiled ‘boomer that wants it all?

It’s about time for another visit with my favorite radiation oncologist and MRI to check up on how Mr. Schwannoma is behaving. I’m hoping this doesn’t set off yet another lengthy round of preexisting condition debates with my health insurance carrier, which may conveniently forget that we’ve already had this argument and they lost. If it does, perhaps I should just be thankful that I have a carrier to argue with? Not everybody at this Hotel does.

For information about dystonia, although I can’t imagine why anyone would be interested unless they have it, check out the website of the Dystonia Medical Research Foundation, dystonia-foundation.org.

Happy Holidays!

How Can I Miss You If You Won't Go Away?

During the course of a “no worries” checkup with the melanoma doc last month, we had a brief discussion about a couple of promising new treatment drugs for Stage IV patients being tested at his clinic and others. (For you melanoma nerds, they are Ipilimumab and PLX4032.) He told me there’s a good chance that I’ll never need to try either of them. Nevertheless, it sounds like we’ll still be seeing one another at least a couple of times a year for the duration. All in all that’s wonderful news, but yet another reminder that one can’t ever leave the Hotel Melanoma. Nevertheless, like a dogged TSA Agent groping for underwear bombs where none are likely to be found, I’ll keep on searching for the exit door.

On a more thankful note, on Thanksgiving Day 2003 I was a few days out of incarceration for the final round of biochemotherapy and passed out on my hosts’ couch after nibbling a little bit of a fine dinner. That’s not going to happen this year.

Happy Thanksgiving!

What's With This Hippocratic Oath?

I’m just a recovering attorney, not a physician, but I’m reasonably sure that one of the principles embedded in the medical profession’s Hippocratic Oath is “first, do no harm”. (Many in the legal profession, if asked to draft a similar oath for lawyers, might propose something along the lines of “first, rack up some billable hours".) As a veteran patient, I must say that this aspect of the Oath sometimes manifests itself in strange ways.

One of my indelible memories about the kickoff of my first round of biochemotherapy treatment is that the nurses, who charged in locked and loaded with multiple IV bags of pharmaceutical concoctions with seriously toxic and potentially fatal side effects, were completely gowned, gloved, masked, etc. As you might expect, I was a bit nervous about the treatment regimen I was about to begin. So, my smart-ass lawyer mouth just had to blurt out “so what’s with the hazmat suits”? The nurse-in-charge’s response was to point to one particular bag and explain that if she got any of that on her it would eat her flesh. And this stuff is about to be mainlined into my bloodstream for the next several days? Yikes. I was so very relieved that the folks who’d installed the infusion line a couple of hours earlier had been so diligent in thoroughly cleaning and disinfecting the insertion site of that line.

Has anyone else experienced such a Hippocratic disconnect?

Better Living Through Visioneering

Earlier this year I experienced another one of those periodic diagnostic fire drills that seem to be common for most all of we lucky survivors. A routine eye exam by an optometrist uncovered evidence of bleeding on my left retina. Silly me, I’d just thought it was time for stronger reading glasses to counter the phenomenon experienced by lots of fellow ‘boomers— my arms have gotten too short to extend out a menu far enough to be in the optimum focusing range of aging eyeballs.

It likely wouldn’t have been any big deal if I’d lied in response to the optometrist’s questions about my medical history. My spouse wasn’t chaperoning me that day, and I could’ve gotten away with it. Instead, I told the truth and the optometrist sort of freaked out on me a bit, immediately voicing his suspicion that a tumor might be the underlying cause.

So, within a few hours I found myself in the hands of a retinal disease specialist at my favorite university medical center and undergoing some mildly unpleasant scanning procedures. (I’m a firm believer in the “one-stop shopping” approach for all medical needs in the hope that one doc might actually talk to another when they practice medicine under the same roof.) But for a rookie resident who, under the annoyed eyes of the scanning technician, couldn’t seem to find a vein for a scanning dye injection, the scans would’ve been fairly easy. I much prefer it when nurses or technicians do this sort of “hands-on” thing, since they’re almost always far better at it than most young doctors who chose a specialty other than surgery for good reason. Maybe it’s good that I didn’t know what’s in that dye, since after a previous scan I couldn’t see the disclosure and consent form placed before me by said resident before injecting said dye. (I may be a recovering lawyer but, honest, this is the only legal document I can ever recall “robo-signing”.) All I know for sure is that it is never a good thing when the rules require a doctor rather than a nurse or technician to inject some substance into your veins.

The scans and examinations showed no evidence of a tumor, thank heavens. The retinal specialist voiced his suspicions that the bleeding might have something to do with prior radiation treatments. However, the radiation oncologist has opined that this is next to impossible, since he’d fired very focused beams of radiation at a target several inches away from the left eye in question. In yet another foolish research expedition on the ‘net, I uncovered an obscure medical journal article about a melanoma survivor whose retinal problems turned out to be early evidence of a recurrence. That sort of iced a decision to listen to my inner paranoid hypochondriac self and dutifully touch base with the melanoma specialist to report a potential symptom. He opined that it was possible but highly unlikely that my retinal bleeding had anything whatsoever to do with melanoma or melanoma treatment. So, the diagnostic bottom line is that the condition is “idiopathic”, i.e. nobody has a clue what is causing it and we’re watching it. And so it goes. Being a longtime resident of the Hotel Melanoma, I’ll take idiopathic any day.

I wonder if anyone else out there has experienced a similar issue?

Show and Tell Times

Before I begin to rant, I must first acknowledge how very lucky I’ve been and how grateful I feel to be a beneficiary of first-rate melanoma treatment. Walking around, still above ground, healthy and in remission seven years out of a clinical trial-- recently described in my cancer center’s newsletter as being a “vicious” regimen that oftentimes doesn’t work-- most certainly amounts to beating the odds by a wide margin. When I began that regimen in the fall of 2003 I don’t think anyone involved, certainly not me, would’ve predicted I’d still be around to be bloggin’ away in 2010.

Nevertheless, I’ve been finding my recent six-month checkups to be mildly embarrassing and disconcerting experiences. It has been a great advantage to receive treatment and care in a teaching hospital setting. And it is very good to be an “interesting” patient for physicians and nurses-in-training because I’m apparently now one of the clinic’s success stories. This is so, so much more pleasant than being an interesting patient because you’re very sick and in deep trouble-- been there, done that. Still, it feels just a little bit strange to be the nearly naked subject of a “show and tell” teaching opportunity where the unspoken but clear message to the student tagging along for the day is “see, not all of our patients die and die soon after coming to us”. And deserving little or no credit for being a success story, it feels just a little bit embarrassing to be treated as some sort of heroic or celebrity patient. But for the grace of God, state-of-the art oncology, and perhaps a healthy helping of random good luck, I’d be dead by now. So, sometimes I think I’d prefer it if the clinic folks would just look me over, tell me I’m still doing fine, and quickly hustle me out the door until next time.

Am I wrong to feel this way?