Mark and Vinny's Blog

Like about half of all New Yorkers right now, I’ve had a rotten cold for the last week. This, on top of my hepatitis C fatigue, means that I’m sleeping 80% of the time (yes, really). Today is the first day I’m feeling like my “disability normal” self again -- meaning that I’m only sleeping 60% of the time.

I said this posting was going to focus on social news, but before I do, let me give a medical update. If you can't wait, just scroll down to the horizontal line below. I apologize that this is such a long blog entry; I wrote it in parts and was going to put it together and post them when I felt up for it.

To treat my polycythemia, I’ve now had TEN therapeutic phlebotomies ("bloodletting") and “donated” a total of about five liters of blood – which is roughly the total blood volume of an average adult. It still seems like such a wacky treatment, but it certainly has been effective. My hemoglobin count has gone from 21 to 13.6.

It's been amazingly successful. I’ve only had one migraine since we started these treatments, which is so much better than twice-a-week whimpering-on-the-bathroom-floor-puking-my-guts-out-for-hours-and-hours. My mental clarity is much better than it’s been for the six months – but not nearly where things were a few years ago. My blood pressure is also now in the normal range, which could be the lower red blood count or that the Quinapril HCL has finally kicked in.

As I wrote earlier, Randy, my hematologist, was insistent on me not doing ANY aerobics or any exercise AT ALL until my counts were in the normal range. Now that they are, I expected her to give me the go-ahead to go back to the gym. She didn’t.

What I didn’t understand is that it’s pretty frequent for folks with serious polycythemia (like me) to have it do serious damage to their hearts because of the thickness of the blood. Think of pumps designed to pump water being used to pump Karo syrup. Not a pretty picture for the pump, and I have lots of family history of heart disease, so I was pretty freaked out. I usually don’t worry about medical tests too much, but this one had me worried.

I was referred to Pedro DeArmas, an HIV-savvy cardiologist, to get a full work up. He is kind and wise and told me the sort of damage we might look for and what sort of other things we wanted to look for as a direct result of living with HIV infection for 24 years. Pedro was also the first doctor older than me I’ve worked with in years.

A few days later, I came back to get a stress echo cardiogram. It starts out like a normal EKG but then they use ultra-sound imaging of the heart (like they do with pregnant women to image the baby). Then with all the wires still in place, I got on a treadmill until I broke a sweat and got my pulse up. Then I had to stop quickly and get back on the table to get more ultra-sound images within 60 seconds of stopping exercise.

I was relieved and thrilled to lean that my heart showed no ill effects of either the polycythemia or long term HIV infection. I also got clearance to go back to the gym -- as long as I started off very slowly.

The next day I was back at New York Sports Club doing 20 minutes of aerobics on the elliptical. I think my stretching-out routine looked more like Winnie-the-Pooh’s stoutness exercises than yoga postures, but I didn’t care. After this “workout” I needed a two-hour nap, but it felt that I was finally making real progress at getting better.

Now that social news I promised.

Back on November 28, HBO hosted a glamorous screening for "Positively Naked" on the top floor of their Times Square world headquarters. We don’t have any pictures of the event, but one of those paparazzi agencies will let anymore preview the photos they have of the event (before purchasing) at this URL. After two and half years in the making, it's now REAL. We even got an Internet Movie Database listing with only only a few errors in it.

Vinny and I have been at LOTS of screenings of this film, and we’re always very moved by the folks who come up afterward. Sometimes it can get pretty emotional, both for them and for us. After about half an hour of these at the HBO event, a big burly bear of a man who was also in naked cover shoot came up to me and said “can I get your autograph… on my dick.” There aren’t a lot of situations where I get flustered. He looked at my frozen stare and gave me a big hug and said “great film, man”

Next up on the social calendar: one of the first holiday cards Vinny and I got this year read “Hi Guys -- Happy Holidays. Saw the documentary and it was great. Congrats. (signed) Harvey Fierstein” – how cool is that?

On December 12 we attended the annual POZ/AIDSmeds Staff Holiday Party. You can browse the photo gallery at markandvinny.com/gallery. Ken Lundie, the piano player and frequent Broadway musical director (who, coincidently, was in a musical I produced Off-Broadway back when I was HIV-negative in 1983!) convinced me to do a perky sing-along musical number to get the ball rolling.

I did a sing-along version of You’re A Mean One Mr. Grinch/Bush with Vinny holding a life-size effigy of our President with green skin, yellow teeth and red eyes. The video turned out much too dark and too loud, but you'll get the idea. Below are the lyrics so YOU TOO can sing-along when you click to watch the video.

You're a mean one, Mr. Grinch. You really are a heel. You're as cuddly as a cactus; You're as charming as an eel. Mr. Grinch. You're a bad banana with a greasy black peel. You're a monster, Mr. Grinch. Your heart's an empty hole. Your brain is full of spiders, You've got garlic in your soul. Mr. Grinch. I wouldn't touch you, with a thirty-nine-and-a-half foot pole. You're a foul one, Mr. Grinch. You're a nasty, wasty skunk. Your heart is full of unwashed socks. Your soul is full of gunk. Mr. Grinch. The three words that best describe you, are, and I quote: "Stink. Stank. Stunk." You're a vile one, Mr. Grinch. You have termites in your smile. You have all the tender sweetness of a seasick crocodile. Mr. Grinch. Given the choice between the two of you; I'd take the seasick crocodile. You're a rotter, Mr. Grinch. You're the king of sinful sots. Your heart's a dead tomato splot with moldy purple spots, Mr. Grinch. Your soul is an appalling dump heap overflowing with the most disgraceful assortment of deplorable rubbish imaginable, Mangled up in tangled up knots. You nauseate me, Mr. Grinch. With a nauseous super-naus. You're a crooked jerky jockey And you drive a crooked hoss. Mr. Grinch. You're a three-decker sauerkraut and toadstool Sandwich with arsenic sauce.

To close out the social year, Vinny and I spent Christmas Eve with his family, Christmas Day helping make dinner for folks at Community Church, Boxing Day (the day after Christmas, for you non-British folks) with my sister. Photo of all this are in our gallery at markandvinny.com/gallery.

To celebrate New Years Eve we continued our tradition of spending six hours cooking, serving, eating and cleaning up a gourmet, candle-lit feast just for two (okay, three including Troika, our dog). For this one meal, we don’t worry about the health effects or monetary cost of the food. Because it’s eaten over six hours, we don’t feel like a stuffed pig when we’re done. As always, it was great.

Re-reading this social section, it's no wonder I’m sleeping 80% of the time just to recover from the holidays .

This week I'll finally be starting my hepatitis C treatment, but that's for another entry.