Mark's POZ Blog

In 2008, we will celebrate 15 years together. Our annual Holiday Cards embrace diversity with a multi-cultural/multi-faith inclusive, secular and atheist-friendly message. You can see past cards on our website. Up until a few years ago, we also wished “Remarkable Ramadan” but because of a quirk of the Islamic calendar, Ramadan migrates through the seasons (this year it was Sept. 13 to Oct 12), so this year’s omission is one of timing, not because we aren’t inclusive of Islamic faith.

In many ways Vinny is more active and happy than he’s been in years. He’s still living with AIDS and end-stage liver disease from hepatitis B. He is also now diagnosed with narcolepsy; like the tin man, he can get stuck mid-action. Back in July, he was hospitalized with aspiration pneumonia from falling asleep while drinking water.

In 2008, Mark will have been HIV-positive for 25 years. He’s positively not dead yet either (wink). But this last year has been a difficult one. His HIV disease is still well managed, but as we wrote last year, in October 2006, Mark was also diagnosed with hepatitis C genotype 1a/1b and polycythemia. Thanks to speedy diagnosis and an aggressive 48-week Ribavirin/Pegasys (alpha interferon) treatment, Mark will be one of the lucky few who become actually cured of hepatitis C by the time you read this. The next step is unknown; how quickly will he recover from the toxic consequences from treatment and to what level of function will he rebound to?

Being largely homebound has given Mark the opportunity to focus on his writing again, including starting a new book, blogging for POZ, a few public speeches and Alternative Conflict Resolution training as a professional Mediator. We’ve both become more involved at Community Church of New York Unitarian Universalist.

I’m sorry to write that Mark’s sister Linda Demichele’s fiancé, Andy Zartolas, died on November 26 after a really difficult year (both for Linda and Andy). Andy had a kidney transplant back in 1993, and his on-going story was inspirational. He really knew how to battle chronic illness the way we have. Andy was wise, caring and his encyclopedic knowledge, conversation and dry sense of humor will all be missed.

For our latest news with all the details, web links for more information, lots of photo galleries, and Mark’s various writings, visit our website: www.MarkandVinny.com

First of all, I’m overwhelmed by the positive feedback, e-mails and cards I’ve gotten from my audience (both live and on the internet) for my the Pride 2007 speech that I gave this last weekend. If you’ve come looking to read that speech, you can either scroll down to the next blog entry or follow this URL.

Today I give myself Pegasys shot number 25, so I’ve just past the half-way point in my 48-week Pegasys/Ribavirin treatment. Both my 12-week and 24-week hepatitis C viral load was has been undetectable, which means that the treatment is an unqualified, total success. That’s a wonderful but rare outcome for folks like me with hepatitis C genotype 1a/1b.

Successfully battling the hepatitis C has come at a pretty high cost, though. My t-cells have plummeting to 151 (my all-time low, where they seem to be staying) but at least my HIV viral load remains undetectable too. I'm also now on Bactrim to ward off Pneumocyctis Pneumonia (PCP).

Each weekly shot incapacitates me for a good four-plus days at a time, so I only have two really human days each week.

In June, my muscle aches, pains and spasms have gotten a lot worse. These are the direct effect of the anti-virus fighting of the regime. Think of how your body aches when you have the flu. The muscles (and skin) are the immune system’s battleground against viruses.

I’ve always had really muscular calves and thighs. Great as a gay man in New York City. Not so good recently -- the bigger the muscle, the more it can hurt. On those bad nights each week, I’d use an electric massager on my leg muscles, take a few Flexeril (a muscle relaxants) and then soak in one or two hot baths during the night. I’ve switched to Skelaxin, which is a new and really expensive drug (both to my insurance company and to me with the $50 co-pay), but it’s working for now, which makes all the difference.

Two weeks ago my doctor sent me for urgent tests in the hospital to figure out why my right leg developed a vascular bump the size of cherry tomato which hadn’t been there two weeks before. It’s not a blood clot, so we’ll worry about fixing it after the Pegasys 48-weeks are over.

This week, I went in for a tongue biopsy (and culture) to figure out why some of my taste buds are the size of small capers or large grains of rice. No word yet. It may well be the same direct effect of Pegasys, just like the skin rash/hives I used to get an now treat with lots of antihistamine before and after each shot.

I always give myself my Pegasys injection on Tuesday at bedtime, but due to some uncharacteristically poor planning on my part, coupled with 90+ degree weather in New York City (32 degrees Celsius), which slows the shipping and delivery of this multi-thousand dollar refrigerated package of four syringes, I had to wait until tonight, Wednesday night.

Medically, being a day late with the injection once every few months isn’t ideal, but certainly isn’t a crisis either.

From my point of view, getting a whole extra good day is major.

I need to schedule my whole life in my Mondays and Tuesdays. Dinner with friends, long chats on the phone, doctors appointments, working out at the gym, grocery shopping and household chores, filling out the endless medical paperwork, paying bills, and e-mailing friends, posting to this blog. It all has to happen in those two days. The other five days, I often don’t answer the phone, check my e-mail or do much of anything. My week's worth of life compressed into two days each week.

Today was like found money. An unplanned, EXTRA Good Day. Vinny happened to be away for a couple of days visiting his sister in Connecticut, I could do ANYTHING. Well, with decidedly limited physical stamina, even more limited finances, a knee-brace (to stop the vascular bump from getting worse), and 90 degrees Fahrenheit (32 degrees Celsius) with 75% humidity, perhaps I could do SOMETHING special.

As you may have guessed from the large image to the right, aside from being able to write this blog entry, I went to an afternoon showing of Michael Moore’s new film Sicko, which opens everywhere else on June 29, but opened a week early in New York.

As a lefty-liberal, I like Michael Moore’s previous work (Fahrenheit 9/11, Bowling for Columbine and the TV series The Awful Truth). More importantly, I think regardless of if you love him or hate him, Michael Moore’s work promotes a controversy that makes people think and talk and not just blindly support their side. Sicko isn’t partisan and even historical Moore-bashers like FOX News have praised this film.

I found Sicko an incredibly moving film. I urge everyone to see it!

The audience I saw it with (an afternoon show near Lincoln Center) audibly laughed, cheered, gasped, wept (you could really hear the sobs) and we all gave a resounding applause at the end, the way you would for a live show. They even waited silently until the very end of the credits. Partially because they wanted to read about what we just saw. And partially because we all needed a few minutes to recover before returning to the world outside the movie.

After I left the theater, I needed to go for a long walk in Central Park, down Writer’s Walk to the Great Mall to Belvedere Fountain. It one of Vinny and my favorite walks. These days it always reminds me of Angels in America, both the play and HBO movie.

How did this great country, the richest and most powerful nation the earth has ever known, end up with such a broken health care system? So far from Universal Health Care, that is considered to be a basic human right in all the rest of the developed world. Of course, I don’t really mean “how did it happen?” but rather “how can we fix this?”

As catastrophically broken as the system is, would it even be possible to federalize all the hospitals, doctors and rest of the health care system? What happens to the Big Pharmaceutical companies? Big Insurance companies? Can we close them ALL overnight like we closed the bars, breweries and distilleries during the prohibition of alcoholic beverages in the US from 1920 to 1933?

I WOULD like to think we can change things before it’s too late – I am gay and positive, after all

The more burned out side of me wonders if that Vacation to London that Vinny keeps promising me at the end of this whole treatment year shouldn’t become our Emigration to England instead.

How much of our daily battles would just go away living under socialized medicine, not to mention legal recognition of being a same-sex couple.

In my case, it might even be considered to be repatriation rather than emigration. Both parents and both siblings were British subjects when I was born in New Haven, Connecticut. I have both a British and an American birth certificate. As a child, I had to travel on a British passport, as being an American was too dangerous in many parts of the world – just like it is today.

I’m probably too much a life-long New Yorker to ever leave. Besides, our apartment is rent stabled in a national landmark neighborhood.

I guess I’ll just have to stay content as an expatriate having scones at Tea and Sympathy and ordering my British TV shows on DVD from Amazon.co.uk that only play on a special UK-only DVD unit.

It’s worth it, though. The best show on TV isn’t available here in the US. It’s the BBC dark and sexy adult science fiction Torchwood (a spin-off from the new Doctor Who) stars the out gay hunk and Broadway singer John Barrowman as Captain Jack Harkness – he’s the world’s only main-stream polysexual superhero (see right).

After I posted this blog entry, I got an e-mail that Torchwood is coming to the US on BBC America this September. It gives me hope for the USA in twenty-first century!

[Here is the text of Mark’s remarks for Pride 2007]

About once a year as I’m hurrying along on the sidewalk in mid-town Manhattan, someone comes up to me on the street and asks if I’m Jewish.

Well, my father was a British Atheist and in the 1930s a Communist from a rather well known Sephardic Jewish family – that’s the “de Solla Price” part of my family name. My mother was a Danish Atheist and Communist from the same era who was Christened in the Lutheran Church, but had almost no other church attendance since.

For my parents religion, like nationalism, was something that separated people into groups of “us” and “them” and caused hostility and intolerance.

As a child, I was a devote Atheist, being quite vocal in my silence during anything god-related in public school or boy scouts. As a very little child, I would sit defiantly as my classmates stood and recited the Pledge of Allegiance. My mom found it chillingly close to the forced Nazi pageantry of her school years in occupied Copenhagen during the war.

My parents would read to me fairytales by Hans Christian Andersen, stories from One Thousand and One Arabian Nights, Classic Myths from the Greeks, Romans, and Vikings. All sorts of folklore and legends, from all over the world. There were tales of King Arthur and King Solomon and Martin Luther King, Jr. with illustrated histories and biographies.

As a family, we celebrated Halloween, Thanksgiving, Christmas, Passover and July 4th with equal secular enthusiasm with feigned an ignorance that others might attribute some religious meaning to any of these.

As a teenager at The Choate School, where I lived during my high school years, I learned that I was considered to be Jewish regardless of my views on religion. And the rebel in me was quite proud of that badge of honor. In my junior year, it even had the fringe benefit of my being invited to dinner with Golda Meir at the Waldorf-Astoria Hotel.

As an adult I found my own spirituality as a mix of Quaker, Taoist, Native American, Jewish, Universalist and Humanist. Today, I think of myself as a humanist Unitarian Universalist and pretty non-thetics. I’ve been a member of Community Church of New York Unitarian Universalist since 2003.

Although the Unitarian Universalist movement branched off from liberal Christianity, a recent study found that today most members identify themselves as Humanist (54%), followed by Agnostic (33%), Earth-centered (31%), Atheist (18%), Buddhist (16.5%), with Christian (13.1%) and Pagan (13.1%) being tied for smallest segment.

Naturally, all that’s too much to say when asked on the street corner, so at first I said “why yes, I am Jewish”

And that lead to my being hustled off the street corner into a nearby waiting van. No, this wasn’t some anti-Semitic hate crime. The “Mitzvah Van” (the Hebrew word for “Good Deed”) was there so I could be “helped” by an ultra-Orthodox Lubavitch Hasidic Jew to and have “the word of the lord” – as in Tefillin or little leather boxes with excerpts from Deuteronomy – tied onto my hand, and head and being coached to repeat a phonetic Hebrew so I could perform my morning prayers. Not my idea of them doing me a good deed.

After that experience, I now answer “No, I’m not a religious Jew.” But of course, my Jewish family heritage is very important to me, and I treasure a whole host of traditions, stories and heirlooms.

Today, being “Pride Sunday” got me asking, like the quintessential Broadway musical A Chorus Line, “Who am I anyway?” What am I proud of?

Well, that’s not easy to answer. Politics is something that defines me and I’m proud of.

Senator Barack Obama wrote in his 2006 book, “The Audacity of Hope”:

I am a Democrat, after all; my views on most topics correspond more closely to the editorial pages of the New York Times than those of the Wall Street Journal. I am angry about policies that consistently favor the wealthy and powerful over average Americans, and insist that government has an important role in opening up opportunity to all. I believe in evolution, scientific inquiry, and global warming; I believe in free speech, whether politically correct or politically incorrect, and I am suspicious of using government to impose anybody’s religious beliefs – including my own – on nonbelievers. Furthermore, I am a prisoner of my own biography: I can’t help but view the American experience through the lens of a black man of mixed heritage, forever mindful of how generations of people who looked like me were subjugated and stigmatized, and the subtle and not so subtle ways that race and class continue to shape our lives.”

Okay, from that I think I’m clearly a Democrat too, although I have crossed party lines for particular candidates and issues in the past, but luckily my mother never found out.

From my work with HIV/AIDS, I know that there are lots of MEN who like to have sex with other men, but consider themselves heterosexuals, not even bi-sexual. We know that Abraham Lincoln (1809 –1865), Eleanor Roosevelt (1884 –1962) and George Washington Carver (1864 -1943) all had multi-year, live-in same sex lovers, but none of them would consider themselves to be gay.

It's kind of like "being a vegetarian" which to some folks means only eating plant-based foods, to others it includes fish and eggs, and other it's that they don't eat red meat except when they do.

That duality must add lots of stress to live. Vinny, you don’t have to worry; this has never been a borderline issue for me. Clearly, I’m 100% gay male.

What else defines who I am as a person?

I’m also the author of a book, a magazine and blog writer, subject of various newspaper, magazine, TV stories and even an HBO documentary. I’m political and civil rights activist, never missed voting, even in the local elections and a second-generation life-long ACLU member,. I’m married to a same-sex husband, I’m a person who lived with HIV since 1983 now living with AIDS, I’m the long-time caregiver of a chronically ill spouse; we live with Troika, a Doberman-mix dog rescued from hurricane Rita and from Texas. (making our adopting her a double Mitzvah)

For thirty years, I was a technology consultant, but for the last six months, I’ve been out on disability while I my body and mind undergoes some pretty brutal weekly anti-hepatitis C treatments, so I can’t really claim any business card title right now, which feels odd. Although I still am an avid reader and a Macintosh and TiVo user.

Ethnically and culturally, I’m Danish, English, and Jewish; Vinny’s culturally Italian and toughly recovered from being raised Catholic.

Well that was a pretty long list of important parts of who I am. But today is the Gay Pride parade, so let me talk about that part for a bit, and then get back to those other things.

Thirty-eight years ago, on June 27, 1969 a bunch of local fags, dykes and drag queens hanging out at Stonewall Inn, the local gay bar on Christopher Street at Seven Avenue, got feed up of being shaken down by the routine corrupt cops. The ensuing riot lasted for days. In hindsight, it is often used to mark the start of the modern Gay, Lesbian, Bi- and Transgender Civil Rights movement here in America.

My friend Dennis Daniel from POZ Magazine, did a little research on the original news coverage of those riots:

The New York Post ran the simple headline "Village Raid Stirs Melee"

The New York Times, told a more in-depth version: “Four Policeman Hurt in 'Village' Raid / Melee Near Sheridan Square Follows Action at Bar"

New York Daily News had, how shall I say, it’s own point of view with the headline "Homo Nest Raided / Queen Bees are Stinging Mad"

To mark the year anniversary of the riots, on last Sunday in June 1970 there was an angry politically rally that demanded “gay liberation” and “gay power” It was a protest and defiantly NOT a parade anymore than the 1965 march out of Selma, Alabama was a parade.

But over the years a funny and wonderful thing happened:

Mae West is quoted as saying “For a long time I was ashamed of the way I lived.” To which a reported asked “Did you reform?” and Mae quipped back “NO! I’m, just not ashamed anymore.”

We learned, from the Black Power movement that “Black is Beautiful” and that taught us that “We’re Here, We’re Queer, and We’re Fabulous” – we learned to be proud of being gay.

By the time as a teenager in the late ‘70s, when I first marched in New York City’s Gay Pride Parade, it was a rite of passage for me. I’m an adult. I’m sexual! The gay disco party parade was in high gear, pun intended.

The early 1980s were a GREAT PARTY and there are lots of amazing stories to tell from that era. Unfortunately the details are a little fuzzy in my mind. Luckily, since I worked at Studio 54 and some of the other legendary discos of the age, I was able to be on camera and identified in print, so I have an archive of photos, clippings and memorabilia that reminds me of the events, even when the brain cells are missing. Yup, that’s me in the photo.

Even more Unfortunately, this was also the ground zero for HIV infection in America. By the end of the 1980s, 150 of my friends and colleagues and dance buddies would be scratched out of my address book by the virus.

For many of us, it’s stopped being a parade and returned to a defiant protest. I was part of the Healing Circle, dressed all in white with custom T-shirts for the day announcing that “Love Heals”. Every few blocks, we’d form a circle, bang on chimes and chant in a new age way.

A drag queen came up to our group and said “I love heels too – just can’t walk in flats” and I realized that it was both a march and a parade. That was the same year a I famous disco star looking cadaverous was pushed in a wheelchair down Fifth Avenue waiving. I vowed I would never miss marching in the Gay Pride Parade.

Then another 100 of my friends died, and it was harder to protest and harder to party. I retreated to the Connecticut shores for a few years to lick my wounds, heal my soul.

Well, I’ve been back in New York for well over a decade now, but haven’t returned to either marching or parading, not because I’m not proud of being gay, nor that I’m not mad as hell and not going to take it anymore, but there are lots of facets to who I am, and lots of things worthy of celebration.

When I asked Vinny, what made him proud of his Italian heritage, he was quick to answer: Art, architecture, design, fashion, Opera, passion, Leonardo da Vinci (1452 – 1519), Michelangelo (1475 – 1564), and Gianni Versace (1946 – 1997). Great food and the best red wine – especially those from the Allegrini Family Vineyards, just north of Verona in northeastern Italy.

When contemplated my Danish heritage, I thought of the sensible Socialist Order of things, of the architecture and modern design and Tivoli Gardens (my favorite place in the world) and a few dozen cakes, pasties, and candies that I know fondly by Danish name. Then I thought of a story my mother told of the Danish king of her dark childhood days:

During the Nazi occupation of Denmark, King Christian X (1870 –1947), would ride on horseback through Copenhagen each day as a defiant symbol of Danish sovereignty. The king even refused to have of the Nazi flag over Christiansborg Palace. During the Nazi occupation, a senior general raised the Swastika anyway. The king instructed him to remove it. When the general refused to do so, the king declared, "Then a Danish soldier will remove it." The German officer said that such a soldier would be shot. The king's reply was "I think not. For I shall be that soldier." The general immediately ordered the removal of the flag

Remembering that story help me understand that figuring out who I was as a person and what my heritage was. It does not require some personality quiz like eHarmony- with a laundry list of check boxes. It’s about learning and retelling the our cultural myths and legends.

I needed to return to those fairytales and folklore I learned a child. These are not just fiction. They are our profound truth. They are who we are as people.

Our heritage does not require that you carry some particular inherited DNA. We are all children of the earth and all worlds’ epic stories and myths are our legacy. We just have to figure out which ones resonate with each of us.

At our annual Passover Seder as we celebrate it here at Community Church, we are told to each new generation, that we are all Jews freed from Slavery.

In this same way, we are all proud drag queens and queers at the Stonewall Inn on of June 28, 1969 who said, “never again to being shaken down by the corrupt cops and beaten up by intolerant thugs.

We are all Danish subjects living under all powerful and seemly invincible Nazi regime, but watch our noble king defiant riding free, showing us that – just by the power of right – we all will eventually triumph and be free ourselves.

We are all segregated but proud black men and women who shared a dream on August 28, 1963 on the steps of the Lincoln Memorial with Dr. Martin Luther King, Jr.

We are all the impassioned protester standing proudly alone against the unstoppable force of a whole column of tanks in Tiananmen Square on June 5, 1989.

For years and years, my late mother did a weekly radio op-ed piece similar to Andy Rooney where she’d comment on the state of the world. These 90-second nuggets would be broadcast throughout the week. Each segment always ended “and I’m Ellen de Solla Price, and that’s my point of view” Everywhere she’d go, bank tellers, shop clerks, business executives would recognize her name and love her or hate her.

Mostly she talked about political issues and social injustice in a way that got folks to notice. Some time between Thanksgiving and Christmas, however, she’d kept returning each year to her reminder that although Men are far more visible in the world of politics and business, it is the Women – our wives, our mothers and our grandmothers – who were the keepers of our cultural identity, our ethnic heritage and our family traditions. These women taught us how birthdays were supposed to be celebrated, how Christmas was supposed to look and feel, and holiday dinners were supposed to taste.

In honor of today’s Pride Parade, I’d like to ask you to think what stories made you proud of who you are? Re-read these stories. Re-rent those videos. Tell the stories to your children, your friends at parties, or to a web-cam for YouTube. Write them down, type them up, or post them on-line. Who you are, who you will be, and who you will be remembered as, are all determined by the stories you choose in your life. I know many of you here today. You’re not a shy bunch, nor have you lived dull boring lives. Go tell some impassioned stories!

This past weekend marked the fourteenth anniversary of the day in 1993 when Vinny and I met and were randomly assigned to work together at a Marianne Williamson HIV support group in New York City.

And those 14 years together were lived with AIDS, so there should be a multiplier, like there is for dog years. Although we've both had to face so many life-and-death obstacles which at the time really sucked, being told that we really don't have too much more time alive together has made us seize the day and take that extra effort to makes those moments special. And all those quality moments add up to lots of happy years of lives well lived.

Hell, Vinny lived for four years with home hospice care and "only weeks to live" and still isn't dead yet either. Taking turns at being caregiver helps, but of course there are those times when we both need to be taken care of, and Troika does the best she can (being a dog and all).

Actually, when one of us is sick, Troika really does act like a mother caring for a sick puppy with licks on what hurts and snuggling up or standing guard nearby in her Sphinx-like guard posture. Unfortunately, being on Pegasys/Ribavirin means that Troika spends altogether too many days staying close by me.

In 1995, we had a big wedding with 125 guests in the garden of my brother's Wilton, CT home and were married by my brother's Rabbi, Chuck Lippman, who insisted that he wouldn't do a "civil union" ceremony, only a wedding. Pretty revolutionary for those days.

Vinny and I wrote our vows together in Strawburry Fields in Central Park and had them made into a wedding Ketubah or contract that all our family, friends and other wedding guests signed. In the Quaker tradition that a couple isn't married under the authority of a church or state, but under the care and stewardship of those attending. This seemed particularly appropriate for a gay wedding in 1995.

We even got a congratulatory note from note from President & Mrs. Clinton

In 2000 I had made the required small donation to the Vatican to purchase a blessing. I expected to be turned down, so I could protest. Instead we got a hand-calligraphied blessing on our fifth anniversary from Pope John Paul II.

You can see photos of all this stuff at markandvinny.com/Wedding

In 2003, after two years of hospice care for Vinny, we renewed our vows with the hospice champlin, who happend to be a Catholic Priest, Father Cesar Espinoda.

Finally, in 2005, we got married legally in Provienceton, MA at the Universalist Meeting House by Rev. Alison Hyder.

With all those multi-cultural marriages and aniversaries, you can see why we choose to celebrate the day we met. Vinny's said that he won't marry me again until we can do it in a way that's Federally legal

The photo above is Mark (left), Troika (middle) and Vinny (right) with 15 Calla Lilies (my favorite flower, 14 + 1 to grown on). The painting behind us is my Great-Great-Grandfather, Benjamin de Solla (1816 - 1894) who was a Professor of Music at the Guild Hall in London.

I love the Memorial Day holiday here in the US. It is the unofficial beginning of the summer, especially in New York City. The bulky Winter clothes are replaced with skimpy Summer fashions and everyone seems to plan frequent escapes to the beach, mountains or "their country place."

This week is also the six-month anniversary of my having to stop working at POZ Magazine and having to go out on disability.

As those of you have been reading along, you’ll know from my description of my experience with Pegasys/Ribavirin treatment, it’s been pretty brutal for me. I take my shots on Tuesday night, and then spend about 70% of the rest of my week -- sleeping, aching or waddling through with my scrambled brains and precious little strength, stamina, or focus.

It’s been two months since I was last able to post to this blog. Frankly, these two months from end of February through the end of April are one long blur. Each week’s treatments knocking me down just as I started to be human again.

But from the end of April and May, things got a LOT better, with a whirl-wind of good things filling my precious few good days, so there just wasn't the time left to blog. I apologize for posting such a long and fact-filled entry, but there's so many details I've been wanting to share as soon as I was able, and that's now!

Back in October, when I was first diagnosed with hepatitis C, we ran an RNA analysis that showed that my hepatitis C is genotype 1a/1b. This type is the most common with gay men in the US but unfortunately it’s the least likely to respond to treatment.

I’ve heard that as many as 80% of folks like me are kicked out of Pegasys/Ribavirin treatment after the 12-week lab-tests because the treatment just isn’t doing enough good to be worth all the pain, suffering and other ill effects. Naturally, I was worried as there aren’t really any other good options for treatment.

Before treatment my hepatitis C viral load was 42,900, after 12-week of Pegasys/Ribavirin treatment my hepatitis C viral load was measured as (drum roll, please) UNDETECTABLE.

Clearly good news. Most of my other blood tests were keeping about the same -- my CD 4 T-cells did drop of 304 to 154, but the probably bounce back after treatment.

Being a math geek, I had brushed up on the math formulas I'd need to understand the relative meaning of the test results.

Please feel free to skim over the next section, How To Compare Viral Load Test Results, which is more of a technical tutorial and pick up my story again at Mark's Treatment A Spectacular Success!

How To Compare Viral Load Test Results

One can’t just compare viral load numbers (of hepatitis or HIV or any other virus), as the significance of viral load is not linear but logarithmic.

If the relationship were linear (which it’s not) 100,000 would be twice as bad as 50,000, three times as bad as 33,333, and four times as bad as 25,000.

Since significance of viral load change is logarithmic 100,000 is twice as bad as 10,000, three times as bad as 1,000 and four times as bad as 100.

As a math geek, I'd write the formula as:

Measure of Improvement = log (starting value) - log (ending value)

Luckily, anyone who has access to a computer with Google Documents (or Excel) can use a spreadsheet to do the math for them. You can even do all the math from the Google search window in any web browser, as it has a built-in calculator. I'll show both ways. First the spreadsheet method, so you see all the steps.

Since my starting value for hepatitis C viral load was measured as 42,9000, I typed the following into the spreadsheet cell:

Then by hitting the enter key, it will calculate what the log of that number is:

My current ending value for viral load was measured as "undetectable" which (for my lab) mean the value is less than or equal to 50. Assuming the worst case, I used 50 as the ending value:

And hitting the enter key and have it do the subtraction:

Now let's do it again in one-step using the Google search page from any browser:

Type in the full calculation log(42,900) - log(50) and hit enter (or click Google Search). The result is displayed as follows. Pretty cool.

My treatment has given me about a 3 log improvement in the first 12-weeks.

Had the log improvement computed a negative number, my infection would have been worse.

For hepatitis C treatment, had the log improvement been between zero and one, most doctors would probably say that you're getting some improvement but not enough to justify all the torture and side effects.

A log improvement of closer to two or more would be considered a success.

Mark's Treatment A Spectacular Success!

Hitting a 3 log improvement resulting in "undetectable" is like batting a home run in base ball or a golf hole-in-one.

I’ll still have to be on the brutal treatment regime until about Christmas (the full 48 weeks) and then I’ll have some months of rehab, but studies show that with this level of response, there is a really good chance that I could actually be cured of hepatitis C.

Spring Retreat in Warwick

With that news under my belt, I felt up for a two-day weekend retreat sponsored by our local Community Church of NY Unitarian Universalist. I had very limited stamina, but boy was it great to be outdoors in Warwick in upstate New York on a picture perfect weekend. We have a few photos from that weekend, plus the funny results of our "art therapy" -- as always in MarkandVinny.com/gallery

Mark's Birthday Party

Because that outing went so well, in turn, made Vinny feel that I should have a few friends over to celebrate my 47th birthday on May 17th – actually, my birthday was on a Thursday this year, so Vinny smartly pushed the party to the Tuesday, catching me at my best.

I had such a great time (check out the photos in the gallery), and it made me feel that there really was going to be a life AFTER Pegasys/Ribavirin.

At the party, I showed the really stupid way they ship Pegasys in refrigerated glass syringes with glass necks that you have to push a needle on to – twisting it just right to get the fit without breaking the glass.

After the guests left, I gave myself the injection and -- for the first time -- half the drug sprayed on my leg. I guess I didn't show the correct way to put it on . Not good. Pegasys is about $550 per shot, so that’s a costly error, plus Pegasys is one of those drugs you really don’t want to have a double dose of, so Vinny and decided that I probably got close to a full dose.

Based on my side effects that week, I did NOT – but if there is any good time to take a little semi-break, it’s for my birthday week. Still some aches and pains, but nothing like a normal week.

Mark, Vinny and Troika in picturesque Milford, PA

We had also somewhat overly ambitiously planned a weekend get-away to visit Sean Strub in Milford, PA from Saturday through Tuesday. Milford, PA is a picturesque town 90 minutes from NYC and Sean has been instrumental in the it’s new-found renaissance. Check out the 8-page story in Instinct Magazine's May issue.

Since I had such an easy week, it made the whole trip that much better. As always, check out the photos in our gallery. We ate great food in Sean’s wonderful new Hotel Fauchère, Troika (our Doberman-mix rescue dog) loved bounding though the woods for half an hour at a time. We played with horses and watched Bald Eagles nest and ate at the other two good restaurants in town – the Water Wheel Cafe and the Dimmick Inn.

On Tuesday I'll start Pegasys/Ribavirin Week 12 and once the bad days pass, then I go in for a full physical (on April 2) to evaluate both how successful the treatment is likely to be (since it's so hard to take, it's not worth it, if it's not doing anything) and also we'll see how my body is holding up to this rough treatment. I know I've lost 35 pounds so far and a lot of stamina.

Reuters broadcast the following item (which was also carried by AIDSmeds.com), and addresses exactly my treatment and the importance of this treatment milestone.

Early HCV Response Predicts Outcome

March 15, 2007 (Reuters Health)

Early virologic response to an interferon-based regimen plus ribavirin for hepatitis C virus (HCV) infection predicts sustained virologic response in patients who are also infected with HIV.

Several studies have already shown that early virologic response predicts sustained virologic response in patients infected with only HCV, Dr. Montserrat Laguno from Hospital Clinic Universitari de Barcelona, and associates explain. But it is unclear whether this holds true in patients co-infected with HIV and HCV.

Dr. Laguno's group investigated the utility of an early virologic response to predict a sustained virologic response to HCV therapy in 95 co-infected patients.

Early virologic response was associated with a sustained virologic response, with a positive predictive value of 64%, the authors report in the February 1st issue of the Journal of Acquired Immune Deficiency Syndromes. In contrast, none of the patients without an early virologic response had a sustained virologic response, the report indicates.

Achieving undetectable HCV RNA at week 4 (a very early virologic response) predicted sustained virologic response with a positive predictive value of 89% and a negative predictive value of 70%, the researchers note.

A very early virologic response had higher positive predictive value for sustained virologic response when patients received pegylated interferon as opposed to interferon, the results indicate.

"The results of our study suggest that the rules of reduction of 2 log of the viral load at week 12 of HCV therapy in co-infected patients have the same value as those in mono-infected patients," the investigators conclude.

Now that I'm working to prevent the weekly hives, it seems that it's taking me day longer to bounce back. Pegasys injection of Tuesday evening. Wednesday, Thursday and Friday a total write-off and Saturday mid-day I start to bounce back. I'm really having a rough time eating most days. It's not much fun.

On the positive side, when I complained to a well-informed friend, this person said "folks on Pegasys who have an easy time are the ones for whom the treatment isn't working."

I have no idea if it's really true -- part of me doesn't even want to research it, because it is such a powerful reinforcement if true -- and I really need to believe it is true.

Feeling like shit 70% of the time is because my body is being cleansed from hepatitis C virus as fast as it can is really a good thing. If that's what is going on, I'd want as many really bad days as I could possibly tolerate to win the battle.

And that's what I've got. So, for now, that's what I'll choose to believe the the hurt is worth every minute of it.

Hopefully tomorrow I'll feel good enough to go to Community Church of New York to hear Vinny sing with the choir as part of the celebration of Black History Month tribute “Music In The Black Tradition." My brother Jeff and wife Esta are coming into the city to join us for the program. I'm really looking forward to it. I hope I have enough umph for that [I did, check out the photos] and for the Oscars later [I took a nap, so I did. Vinny didn't and didn't].

One of the good parts of having so few good days, is that it makes each one special. Last week on my one good day, my nephew Tom Demichele came into New York for a day of fun. This week, I went to a Mardi Gras Party and then my sister Linda Demichele (Tom's mother) came in a we celebrated her 57th birthday -- actually, she did more for us that we did for her.

She even scrubbed down the bathroom (again), did some household repairs, and even paid the ConEd bill (again!). But Vinny and I had the birthday party hats for her and lots of love. Being a couple with both folks on disability isn't great for either the money or the household chores. But we have some great memories and plenty of photos, which you can all see at markandvinny.com/gallery

I feel really happy about all the good times, but I didn't get much else done, and I don't have much human-time left until next week. And now, after a wonderful day, I just took my week number seven shot. By tomorrow, I'll probably be feeling miserable again.

This week we're trying to stave off the hives before they kick in. My elbows, knees, and ankles look like I've been sleeping in poison ivy. I'm told that strange rash-like things are pretty common, although they act very differently for each person. Technically, they are NOT allergic reactions and can be difficult to treat, but it should be easier to prevent from coming into full bloom.

Our current attempt is to dose up with Benadryl (actually DiphenhyrdrAMINE Hydrochloride, the MUCH cheaper generic) and Tylenol before the shot and then again morning and evening of the first day. The Benadryl really knocks me out, but I'll be sleeping all Wednesday anyway, but at least this way, I won't wake up with full hives. I'll have an itchy rash, but soaking in the tub once or twice a day with Aveeno colloidal oatmeal bath powder and slathering on the 0.5% Hydrocortisone Cream should help... Mostly.

Ever wonder how Werewolves have to schedule their lives? Werewolves have a really bad day or two every 28-days where they have to clear their schedule. But it’s predictable, so I guess you can learn to live with it. You certainly don't want to get your days mixed up and end up at a wedding or something on a bad day.

In my world of Pegasys treatments is measured by the weekly injections, not monthly full moons. I do the injections every Tuesday evening, so every Wednesday and Thursday, I’m pretty miserable. My whole body just aches. I’m pretty much bed-ridden and out of it.

I don’t even check e-mail, read, or watch movies or anything. Fridays are my “hump” day and about half the week’s I’ve read my e-mails (if not replied to them yet), opened my postal mail, and basically taken stock of what’s happened in the world since I stopped being part of it. By Saturday, I’m somewhat worse for ware, but mostly functional again. Stuff that needs actual thinking, like this blog or working on tax returns or disability paperwork, that can only happen on Mondays or Tuesday. Period.

Werewolves have it easy. They only loose out on about 7% of their lifetime. On Pegasys, I loose about 50% to 70% of my usable lifetime. There’s just no way to push through on those bad days. You’d be surprised how much less one gets done with 70% less usable lifetime. I miss that lifetime!

Today will be my sixth injections of my 52-weeks of shots. There’s something strange about physically giving yourself an injection that I know is going to beat me up so much.

Henny Youngman, the Jewish-American borscht-belt comedian “King of the One Liners,” used to joke: "Doctor, it hurts when I do this." "Then don't do that!"

But it’s the best shot I’ve got (pun intended) at long-term health, so I’m getting used to having to clear half my life for a while.

And if you’re looking for me on-line, I’m only human Sunday through Tuesday for now.

Thanks to the herculean efforts of Dennis Daniel, the POZ human resources person and Wendy Frank, the insurance agent and Jeanine Muzzi battling the bureaucracy of Oxford Health Insurance, I once again have both health insurance and prescription coverage!

I was actually able to swing by Village Apothecary and pickup my outstanding prescriptions. There was no gap in coverage, so all the things that got rejected in the last week should be able to be resubmitted and just work.

It will be a clerical mess, but I can deal with that. Boy that feels better!

When I try to explain the draconian machinations of the US health insurance system to my friends and family in Europe, they just can’t understand why we allow it.

In Denmark, where my mother was born, and were my cousins still live, there is universal practically free health care. Hospitals, tests, doctor’s appointments, prescriptions – everything is almost completely covered for EVERYONE. In fact, health insurance is illegal in Denmark.

Of course, the Danish people are willing to make trade-offs that we Americans will not. They think it’s reasonable to share the total health care budget with the whole population, so they won’t approve expensive tests and treatments that we in the US consider routine. For example, because of Vinny’s age and multiple, terminal diagnoses, the Danish system wouldn’t consider the ridiculously expensive course of treatment that’s kept him alive for the last ten years.

The Danish people also share this view. I remember when my mother was in the last years of her life and her routine level of health care was equally ridiculously expensive, she wondered if it was moral for her to accept this level of care to extend her life for another few years, if that meant the health care funds were unavailable, say, for fifty poor mothers to be able to get adequate prenatal care.

I guess I’m hypocritical. I’ve been very politically active for years fighting for universal health coverage in the US, but as someone with great health insurance, I love the huge piles of money that are spent keeping us alive and healthy. Well, I love the positive effects anyway.

In New York State, we are fortunate that folks with chronic medical conditions like HIV/AIDS and hepatitis can get health insurance. Most US states allow insurance companies to exclude preexisting conditions or deny coverage if you flunk a physical. That was our problem when we lived in Connecticut and why we had to move.

But individual policies can be really expensive. For example, Vinny’s health insurance is $975.70 per month. Group plans can be easily half that. I had a pretty good health insurance through POZ, so I was going to take advantage of a 1986 a federal law called “COBRA” that permitted folks who left a job that provided health insurance (like I did going out on disability), to continue that coverage by reimbursing the former employer for the complete cost ($416.03 per month) for 18 months (28 months if continued disability).

In theory, submitting a COBRA form, like mine on the right, should be only minor bookkeeping item. The health insurance is not supposed to be effected. You don’t even get a new card. It’s the same old policy.

On Tuesday, I saw my Ear, Nose & Throat Surgeon Stacey Silvers to figure out why I’ve been gagging and throwing up so much. I was worried that it was a complication from my tonsillectomy in 2005. It turned out that it was “just” that I’ve developed acid reflux disease, but that’s treatable with a prescription and regulating how and what I eat.

Next stop was Village Apothecary to get the prescription filled and pickup some other refills. They said the computer said I didn’t have health insurance. I said “you mean this prescription isn’t covered by my plan” and Chris said “no, it’s covered, but your policy has terminated.”

I was shocked.

Right there from the pharmacy counter I called the Dennis Daniel, the POZ human resources person who called Wendy Frank, the insurance agent. These are two terrific people and they too were dumbfounded with the insurance company’s response: “most of the time COBRA transitions are seamless, but sometimes one record has to be deleted and another added, and that can take ten days to straighten out.

There was nothing more I could do that night, and besides, I needed to go home a take my Pegasys shot.

This week my Pegasys side effects were a bit rougher than the previous week, so I didn’t do too much out of bed on Wednesday, Thursday or Friday.

On Friday, I was starting to really freak out. Every number I called at Oxford just told me I wasn’t insured. I hadn’t been able to pick up any prescriptions all week. Some insurance person suggested that I pay out of pocket and then submit for reimbursement. This week would be over $1,000. Next week will be over $2,000. That’s just not an option. Next, two of my doctor’s offices called that I was coming up uninsured and that I had to have this resolved before my next appointment.

Everything is just so automated, it’s impossible to make any headway. I don’t usually “borrow trouble” but I got to worrying what would happen if my crappy side effects got worse and I had to head to the hospital over the weekend. There was no way I could convince them I really had health insurance and that it was just a clerical glitch.

Fucking “A”, I’ve beat HIV/AIDS for almost 25 years and now I might be derailed by an insurance company clerical glitch.

On Saturday, I woke up and was feeling MUCH better, so it doesn’t feel so life and death, but I HAVE TO have this resolved before the next Pegasys shipment has to go out next week. It would be REALLY BAD to have to stop and restart this treatment. I won’t worry about that now. I’m sure collectively we’ll figure out how to escalate this next week.

Also, I got a little more perspective on all this. We're damn fortunate to have such great health insurance, even though mine had a little glitch. For both Vinny and me, our injectables cost more than our pills, but somehow the huge pile of pills are more tangible to show our efforts in working to be well. Between the two of us, we take more than 25,000 pills each year:

It's now Friday and I had my first Pegasys shot and first round of ribavirin capsules on Tuesday evening. The Pegasys shot is once a week, the ribavirin capsules are 3 capsules, twice each day with food.

Tuesday night and Wednesday morning I felt dizzy, disoriented and sweaty, but hell, in the old days I had to pay good money for cocktails or recreational drugs to feel this way.

I'm still sleeping 14 hours each day, which kind of sucks, but that is one of the main reasons we've opted for treating my hepatitis C aggressively.

On Wednesday and Thursday, about half the time I felt fine, and half the time I ached all over. The kind of body ache you get when you're really hung-over, or when you have the flu. It hurts to move, it hurt to sit, it hurts to drink cold things, it hurts to drink hot things. Hell, even my hair hurt. I felt hot and flushed, but wasn't actually running a fever.

Unlike the flu, after a few hours (or even half an hour in one case), the ache would ebb away and I'd feel fine. That's the good part.

The bad part, is that I have not yet figured out any pattern as to when the aches come back.

On Wednesday evening I had a committee meeting where five of us were evaluating groups to support with grants. As a child, when I was asked what I wanted to be when I grew up, I'd say "a philanthropist and a philanderer." I certainly got the later covered for many years, but this is my big chance at the former.

Since I was feeling okay, I went to the meeting, with Vinny in tow, just in case. Good thing. Three quarters through the meeting, the aches kicked in, and Vinny and to help me down the stairs and into a taxi home. By the time Jay Leno was on, I was feeling fine.

On Thursday, I had an appointment with my hematologist, Randy Levine, and we're going to put my phlebotomies on hold for the next month. Pegasys and Ribavirin often causes anemia, so with luck it will perfectly balance out my polycythemia. We'll run blood tests weekly, and if we need to take action, we can. I was starting to get problems with my veins from all the needles, so I'm happy we can give them time to heal.

It's almost 2 PM on Friday, and so far today I haven't had any of those body aches today -- which is wonderful. I know some people only have side effects for a few days, so many mine are past for the week, but I'm going to sick close to home anyway, just in case.

After a little over a month delay to deal with my polycythemia and a week more to wrestle with the insurance company, this morning a styrofoam cooler arrived by overnight messenger from the specialty pharmacy with four pre-filled syringes of Pegasys (refrigerated) and two bottles of Ribavirin capsules and assorted other goodies.

This afternoon, I had a previously scheduled appointment with Paul Chambliss, my main doctor, and I had lots to review with him covering the four other doctors I've seen in the last month. As usual, I had a whole check list of things to go over together.

My HDL (good cholesterol) is a little low (25) and Pedro DeArmas, my cardiologist, wants to add Niaspan, but we're going to wait until the Pegasys+Ribavirin settles down. I've also noticed that I've recently got edema (water retention) in my legs and hands, so we add a blood test to check that out. I've been gaging on stuff caught in my tonsils, even though I had them out last year, so Paul wants me to see Stacey Silvers, the really wonderful surgeon who did my tonsillectomy. The rest of our items were housekeeping stuff: Insurance paperwork, changes in insurance procedures, insurance referral forms, prescriptions, etc.

I'm ready, but I'm more than a little nervous because of all the nasty potential side effects, so Vinny took me out to dinner at DoJo, a local healthy Japanese restaurant on Washington Square that we like, and over Shrimp Curry Yakisoba with Raspberry Ice Green Tea, I swallowed my newly expanded collection of dinner pills, including Tylenol and Benadryl to ward off some of the potential new side-effects.

I on the way home, I started to feel a little dizzy and soft-focus, but that's not necessarily a bad thing. While I type this in I'm letting the refrigerated syringe warm to room temperature. Not that any of the tons of instructions they sent suggested doing so, but I know cold injections hurt like hell.

So here goes...

The injection was painless -- I'm used to giving subcutaneous injections by now. So far, so good. I'll post an update tomorrow.

Tonight's dinner pills are: (top row) Truvada, 2 Viramune, 2 Ziagen, Tricor (lowers cholesterol), low dose Aspirin (thins blood), Proscar (reverses hair loss), (middle row) 2 Quinapril HCL (lowers blood pressure), 2 Tylenol, 2 Benadryl, 3 Ribavirin, (bottom row) 8 K-Pax capsules (custom multi-vitamins for HIV disease)

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.

Well, it’s been about a month since my last blog entry. "Weren't you the one who said bloggers should blog weekly?" Guilty as charged. In this entry, I'll catch up on medical stuff…

On Thanksgiving, I started my medical leave from POZ to focus on my various health issues. Before I could start my yearlong treatment for hepatitis C (Roche's Pegasys with ribavirin, now scheduled to start in the first week of January), I had to get my polycythemia under control -- and this turned out to be a much more serious deal than I had thought.

As I’ve written before, polycythemia is a blood condition that is the opposite of anemia -- I have too many red blood cells in my blood. That’s a problem because it makes the blood so thick that the heart can’t pump it and it can’t get through all those micro-capillaries to deliver oxygen to the muscle and brain.

Polycythemia can be caused as a “secondary” result of a hormonal or chemical imbalance (for example too much testosterone) or as a direct result of an underlying problem, such as a bone-marrow disease. Before we could start treating the symptoms, my hematologist, Randy Levine, ordered more tests including some high-tech nuclear medicine tests at Lenox Hill Hospital.

Actually, the test itself was a little anticlimactic. They took out 300 cc’s (about a cup measure) of whole blood from one arm, added a radioactive compound that would tag the red blood cells, wait a while, add more compounds and then infuse this back into my arm and then drew off samples from the other arm after exactly half an hour.

I’m used to being a biohazard but now I was going to be radioactive (for a month) and they had to issue me a special card (pictured on the right) to show to the homeland security police when I would set off George Bush’s terrorist detectors. Given my activist background, it’s somehow fitting that this diseased pariah can now set off alarm bells and trigger a swat team at Grand Central just because of my blood.

The tests didn’t tell us much. Polycythemia is notoriously difficult to diagnose. For now, we’ll just assume that I’m one of those 1-in-a-million people who gets polycythemia vera. It’s not curable, but it is treatable, so now we could begin treating it.

Someone asked me if I was freaked out about this diagnosis. I said it didn’t really matter if I was living with two or three deadly, terminal, incurable conditions, I had every intention of NOT dying from them any time soon.

Although the diagnosis was very high-tech, the treatments aren’t. For the last few weeks I’ve been getting twice-weekly bloodlettings -- sounds like something they’d do in the seventeenth century. In the twenty-first century they call it therapeutic phlebotomy. Twice each week I have to be admitted into Roosevelt St Luke's Hospital as an outpatient and then it’s just like donating a pint (half liter) of blood.

I even get juice and cookies and a big “I donated blood” colored bandage. Of course, instead of going to the blood bank, part of me gets unceremoniously disposed of in this industrial strength biohazard disposal unit.

I’ve now bled out about four liters of blood, and my hemoglobin has gone from a dangerous 21 down to 16.3, which is the very top of the “normal” range, and I’m down to once a week. My blood pressure is also normal range. I can think more clearly. I’ve only had one migraine in a month. I’m still sleeping all the time, but it sure is nice that so many of my problems and symptoms were from the polycythemia and not the hepatitis C.

I was so happy with my progress that when I saw Randy, my hematologist, I said “I’ve been extra cautious, like you advised, and have done no aerobic exercise, no lifting, no climbing and basically have been a couch potato because I didn’t want to have a heart attack or stroke from my blood being too thick. I’d really like to get back to they gym – slowly at first – to regain some strength and health.”

Randy surprised me with “Mark, you’ve been VERY PRUDENT and even though your numbers are better, I want you to have a full cardiac workup and clearance before you return to even light exercise.” So this Thursday, I’ll add a new member to my medical team, Pedro DeArmas, my cardiologist. I sure hope he clears me for more activity... At the very least, I want to push to start back with Taoist Tai Chi.

In writing this up, I JUST remembered that I’m also taking one baby aspirin daily because of the polycythemia to help thin the blood. Unfortunately, I forgot to add it to my list, so I didn’t pour it into those little plastic drug bags that I set up for the month when I made them last week. OOPS, I missed the last six days. I just took one and I'll add them in. Vinny and I have GREAT drug compliance because I’m so organized (or obsessive-compulsive). I hate screwing up on the dumb stuff.

In a few days, I'll post a social update covering the screening of our HBO documentary, Positively Naked, some celebrity fan mail we've gotten from it, and even a video clip of my leading the POZ holiday party in a rousing chorus of "You're a Mean One, Mr Grinch/Bush".

This has been an eventful year: In January, I finally gave in to Vinny’s many months of asking, and we welcomed Troika into our home. She’s a Doberman-mix rescued from Texas after hurricanes Katrina and Rita. In February, Vinny slipped and fell during the season’s only blizzard and shattered his shoulder. Miraculously, after tons of physical therapy it’s about 85% healed.

At the end of March, Vinny was kicked out of hospice care (after four years) for not dying “within weeks” as expected. We miss the 54 hours of home care each week, but we’re thrilled to report that Vinny’s health has continued to improve. They can’t explain why he’s better, but he just is.

Unfortunately, Mark’s health has not fared quite so well. After months of extreme fatigue and frequent migraines, six weeks ago Mark was diagnosed with hepatitis C and polycythemia in addition to HIV (more details on the website). He has just begun a medical “sabbatical” from POZ Magazine to focus on supporting his own health and to begin additional treatments.

We’re happy to announce that Vinny’s niece, Melanie Allegrini Alvarez (who he helped parent) and her new husband, Steve (who is just back from Iraq), gave birth on October 20th to a new generation: Gabriel Antonio Alvarez!

Lastly, we’re thrilled that after two years in the making, our award-winning HBO documentary, Positively + Naked, will be broadcast on Cinemax, starting on World AIDS Day, December 1st at 7 PM Eastern (see the back of our holiday card [the graphic is actually below] and check local listings for additional broadcast times). Vinny and I are very proud to be an important part of this wonderful film.

For more details, lots of photos and the latest news, visit our website:

www.MarkandVinny.com

Mail & Delivery: 332 Bleecker Street # 212 • New York • NY • 10014-2980 • USA

Well, Thursday November 9 was my one-month anniversary knowing that I’ve got hepatitis C. I had really wanted to write up a blog posting, but I was just so beat from working and doctor’s appointments, so I put it off until after my post-workday nap, but I slept through until Friday morning. I vowed to blog over the weekend, but I spent that sleeping too, so now it’s Monday. Well, that’s pretty much the way my life is these days.

I started last week with an appointment with Les Seecoomar (my liver specialist), who had just gotten my liver biopsy results. Yup, it’s hep C and it’s a relatively recent infection (which is good news) and I have “stage one” fibrosis (the first level precursor toward cirrhosis and is also good news).

I also have no indication of iron accumulation, which made Les worry about why I have such high hematocrit, which is the percent of the blood composed of red blood cells. The “normal range” for men is something like 40% to 50% and mine was 58%, so he wanted me to see hematologist. We picked Randy Levine, from Lenox Hill Hospital who Vinny saw a number of times. Apparently there are a number of blood disorders that can interfere with alpha interferon treatments, so we have to get them ruled out first.

On Tuesday I had a phone consult with Paul Chambliss and have re-doubled again my high blood pressure medication Quinapril HCL to 80 mg per day.

I had my last two years worth of blood tests faxed over (about 25 pages) to Randy and headed up to her office the next day. On Wednesday, it was a torrential downpour and I just couldn’t face taking three subways to get to the Upper East Side, so I splurged for a taxi, but with the weather, it took 45 minutes and cost $20.

I had expected this to be a pretty quick “rubber stamp” sort of thing, just to be on the safe side. It turned out to be much more in-depth than I expected. And it turned out that Randy said I had polycythemia a condition where I have too many red blood cells per liter of blood circulating through my system.

This can be very serious as the blood becomes too thick (think of tomato ketchup vs. tomato soup) and when it’s too think, the blood can’t get into all those little arteries and can dramatically increase the likelihood of heart attack, stroke and other clotting problems. It also explains why I’m bright red rather than jaundice yellow and might even be why I’ve been having all those migraines and could even be the cause of my new-found high blood pressure and might contribute to my fatigue problems.

Polycythemia can be cause by either too much red blood cell production or too little blood volume. The next step is a nuclear medicine study where they radioactively tag some red blood cells and spend the day watching them. We’ll do that THIS Wednesday. The treatment in the short term is doing weekly blood letting or as they prefer to call it therapeutic phlebotomy. It won't interfere with starting alpha interferon -- great news -- and the anemia side effect of the alpha interferon might actually decrease my need for those blood letting sessions.

Thursday’s doctor was David Mazza (my allergist), and we figured out that I was allergic to all the things I knew about plus mold. “There's Fungus Among Us” I exclaimed! But this probably wasn’t the cause of the migraines.

Friday’s doctor was Michael Medeiros (my hottie dentist pictured on the right). This didn’t have anything to do with HIV, hep C or Polycythemia, but my dental insurance was going to stop when I went out on disability, and I wanted to make sure there weren’t any expensive problems lurking around.

Tomorrow I meet Olga Leonardi (my new Endocrinologist) who is going to do a DEXA scan to look at my body composition and try to get to the bottom of my very low testosterone (“normal” is 260-1000 ng/dL, I’m at 169 WITH daily androgel supplements), slightly high cholesterol,(“normal” is under 200 mg, mine is mine is 238) and very high triglycerides ,(“normal” is under 150 mg/dL, mine is 412).

Tuesday, October 31, 2006 (Halloween)

Back on September 25, Shawn Decker and Gwenn Barringer stopped off on Shawn's My Pet Virus book tour at my local Barnes & Noble. Being long-time fans, Vinny and I were in the front row. Shawn coined the term Positoid for HIV-positive folks and thin blood for hemophiliacs. I asked him "What's more of an issue day-to-day for him, being a Positoid, thin blood, or (I was thinking on my feet...) being a hep cat?" He said being a Positoid was more difficult because of all the meds and side-effects.

I've always enjoied any excuse for a good party. My parents were the same way. I've been HIV-positive for most of my life and lived and played at what was to become ground zero of the early AIDS epidemic in America. I stopped counting, but I've deleted about 200 friends from my address book who are now dead from this disease.

I think this gives me even more of a reason to celebrate life anyway I can. I also think this is the same reason that the folks at the POZ office makes such a fuss over every birthday and holiday. A few weeks after seeing Shawn and Gwen again, we started to plan for the POZ office Halloween festivities. Every year most of the staff dress up in costume and decorate their desks and those that care to "reverse trick or treat" going desk-to-desk delivering candy, baked goods, fruit, health food, whatever. Last year, I dressed up in a lumber jack outfit with pink fairy wings and a large button saying "Yes, I am a fairy. Got a problem with that?"

Having been dealing with the whole hep C thing the two ideas just clicked together and came up with being a Hep C Hep Cat. Seemed like a great way to jump ahead to the funny side of the whole thing. I snagged Alison Zack, my friend who almost single handedly makes all the web graphics for POZ.com to work her PhotoShop magic and make a sexy Hep Cat graphic and had a t-shirt made up (often one of my first steps for a new project) and went shopping for cat ears and a tail.

For those that don't know, in the early 1940s the term Hep Cat was used to describe folks on the musical creative cutting edge, especially jazz enthusiasts and more generally members of the Beat Generation. In the 1950s, as the music changed, the musical mavericks were called hipsters and by the 1960s they became hippies.

POZ Staffer Halloween Highlights, front row, left to right: Mark de Solla Price (a Hep C Hep Cat), Angelo Ragaza (a rapper), Regan Hofmann (Pocahontas), Angel Gonzalez (Robin, the boy wonder); back row, left to right: Jennifer Morton (Mouseketeer Jenny from The Mickey Mouse Club), Lucile Scott (Charlie Chaplin's Little tramp), Dennis Daniel (Lusty Pirate), Bob Cook (Navy Seaman), Alizon Zack (Partly Sunny, Chance of Showers).

left: Mark de Solla Price, Vinny Allergrini and Bob Cook
right: Regan Hofmann, Angelo Ragaza and Jennifer Morton

left: Regan Hofmann and Mark de Solla Price
right: Giovanni Vitacolonna and Dennis Daniel

Thursday, October 19, 2006

My alarm is set to 5:45 AM – a good hour and a half before sunrise. Today I have my liver biopsy at Roosevelt St. Luke's Hospital in midtown New York. Vinny's had literally dozens of procedures there, but today is my first time walking down those same corridors. It's both so familiar and strange at the same time. I was 15 minutes early for my 7 AM check-in. I am so not a morning person, so it's just as well to get this over with before my mind kicks in. I was ready with all the paperwork ready.

By 8 AM, I was in the smallest operating room I had ever seen. Four people were scrubbing in. In general, I prefer less medication, but my blood pressure was really high (like 185 over 130 -- perhaps because I saw the size of the skewer they were going to drive through my chest). I voted for the more drugs option.

The traditional method is to jab a six-inch needle under the right shoulder blade to get the liver sample. I was told that since they were using ultrasound to see what's going on, they would go in through the middle of the chest right under the sternum. I had local and general anesthesia, so I was awake but wouldn't feel a thing. Well, I didn't feel pain, but I did feel the impact, kind of like coring an apple through the middle of my chest. Not a nice feeling.

The sample looked like a skinny worm in a baby food jar filled with water. That part was cool. My blood pressure was still on the high side (which it hadn't been before) but they released me and now I have another thing to keep tabs on.

Vinny was out of town visiting his sister, so my brother came to the hospital to pick me up and then we had lunch at Florent Restaurant -- the location of the now famous Spencer Tunick art installation and photo shoot for the POZ tenth anniversary cover and the HBO Documentary -- and then I was off to sleep for the rest of the day.

I grew up a devout Atheist, and went through phases of being Jewish, Pagan and Quaker. Now I’m a Unitarian Universalist Humanist and member of The Community Church of New York Unitarian Universalist and The Unitarian Universalist Meeting House of Provincetown.

Both groups have been particularly active in promoting equal rights for same-sex married couples. I think of the Sunday service like an ACT-UP meeting but with really great music. I don't think of myself as religious as much as socially/politically/ethically active.

Although the Unitarian Universalist movement branched off from liberal Christianity, a recent study found that today most are Humanist (54%), followed by Agnostic (33%), Earth-centered (31%), Atheist (18%), Buddhist (16.5%), with Christian (13.1%) and Pagan (13.1%) being tied for smallest segment.

Today, I got an e-mail from the Rev. Forrest Church, the minister of one of the other New York City Unitarian Universalist groups, Unitarian Church of All Souls, which is much farther towards the Christian end of the spectrum than I'm usually comfortable with.

I was so moved by what he wrote and how it paralleled my own journey that I wanted to share an excerpt with you folks (bolds and ellipsis are mine -- you can read the full text of the original here) without any further comment:

Tuesday, October 17, 2006

Dear Friends,

With apologies for sending this word out so impersonally, I’m writing to share with you the news that I have esophageal cancer. A bank of tests conducted over the past two weeks has confirmed the existence of a malignant tumor high in my esophagus, and we shall determine a protocol for treatment (radiation, chemotherapy, and, if possible, surgical removal) before the end of the month. Unhappily, this is a particularly fierce form of cancer; happily, it apparently has not spread. More important than any of these cold medical facts, I am in good spirits and more grateful than ever for the gifts of life and love....

After almost three decades as your minister, I have been graced with so many teachers, whose courage in face of life’s troubles has been a constant inspiration. ...Our human response to the dual reality of being alive and knowing we must die, and the purpose of life being to live in such a way that our lives will prove worth dying for—offers me the same comfort during my own time of trial that I pray it has given you in yours.

...I will be taking a medical leave of absence from my pastoral duties... The best thing you can do to bolster my already high spirits is to carry on all of your good works, continue to expand our ministries during this critical period in the life of our nation and world, worship to a fare-thee-well, and keep the budget balanced!

As for my three mantras—do what you can, want what you have, and be who you are—I practice each every day, feeling myself blessed beyond measure. Please know that you live in my heart, an abiding presence that fills my life with strength and joy.

Love,
Forrest

Thursday, October 12, 2006

As I've written earlier, Vinny and I have been working with a great liver specialist, Leslie Seecoomar. He is young and smart and over the years we've developed quite a good rapport, so now that it's my turn to see a liver specialist, we made an appointment to see Les.

We went to his new offices at Columbus Circle and he greeted us warmly. He joked with us that whenever he goes to medical conferences or family reunions or whatever and folks Google him, the first few pages are various places quoting Vinny calling him "A truly gorgeous Ken doll with blue-black hair.” Vinny (and I) are guilty as charged. Just for the record, Les has a wonderful wife and three great kids, but hell, if you're going to be gravely ill, you might as well have doctors around you who make you smile.

After catching up socially, we did get around to talking about my liver. Given my blood work and extreme fatigue, we probably did want to begin pegylated alpha interferon (Pegasys) supplemented with ribavirin (Copegus). Check out the Roche Pegasys website.

The likelihood of success and duration of therapy could somewhat be predicted based on hepatitis C genotype (which would take 3-4 weeks to get back) and results of the liver biopsy, but a much better idea of both success and duration of therapy would come after 90 days of treatment.

Folks have told me that Pegasys (from Roche) is incredibly expensive (but covered by insurance). It's only about $2,000 per month, which isn't cheap, but not more than everything else I'm already on. Even a full two year course of treatment would cost 1/20 of what the least expensive liver transplant would cost.

The bad part is the side effects. The new formulation is easier to take and for some folks it is no worse than having the flu. But others are bed ridden as they would be getting chemotherapy. Without treatment, my fatigue is so bad I can't get through the week. With treatment, there's a pretty good chance of success, but there's no way I'm going to be able to keep working through it. It's what I expected, but now it was real.

I'm going to have to go out on a medial leave of absence and go on disability. One of my buddies prefers to call this a sabbatical -- which I really like: In the academic field people take a year off every seven years (or they used to in the days of tenured professors) to recharge their batteries and keep fresh.

One thing I was worried about was picking the best treatment to keep my options open down the road. It turns out that hepatitis C doesn't have drug resistance issues like HIV does, so there's no chance of failing treatment. If treatment doesn't work, then we can try something else, and if that doesn't work, I can still try whatever is in the research pipeline later.

Wednesday, October 11, 2006

As we go through life, each of us assembles our own unique survival kit to cope with our life. To cope with major pieces of news like medical diagnosis and figuring out new facets of who I am, my modus operandi tends to be a 3-2-1 countdown:

I start by doing my homework. Like a lot of writers, I'm a voracious reader. I research on the internet; buy books; find the esoteric, niche magazine for whatever it is. Although I'm a high tech guy, I also have dyslexia, so it's a lot easier for me to read and make notes on paper. I print out a lot and read with a highlighter and post-it notes.

Next step is introspective. I let it sink in. I see what makes sense and feels right for me. Being an extrovert, I talk and e-mail about whatever it is with my family and friends. The Quakers would call this step "coming to clarity" -- accepting and loving myself for who I am today, warts and all. Actually, there are no good parts and bad parts, there are just parts. That's the goal, anyway.

Once I know the facts and know what's right for me, one of the best ways to feel good about who I am is to talk about whatever is going on. Talk to friends. Talk to groups. Go on TV. Write about it.

Maybe I'm just a media whore. It seems to runs in my DNA – it’s certainly been a family tradition for generations, especially with my parents and brother. My father is still on TV pretty regularly as the great scholar and science policy diplomat, even though he’s been dead since 1983 – check out his Wikipedia page.

Once I finally figured out I was gay (at 17), I was photographed at gay pride marches and gave my name for the caption. When I found out I had HIV, I was an early face of the disease in the press and on TV. It’s part of my tool kit for life: Be proud of who and what I am, and be honest and open about it, because it can really help a lot of folks in similar situations who aren’t able to “come out.”

My advice to others about disclosure, whether it's HIV or hepatitis or anything else, is to avoid the first (or perhaps second) reaction of wanting to tell everyone. DON’T! Let the information, knowledge and feeling combine and mellow together for a while first. Personally, I never take this advice. I'm just not wired that way.

Having let all this mellow for at least 12 hours, I was ready to come to work and disclose. I knew I was lucky because the folks at work had the knowledge to know that I wasn’t a physical risk to them. I knew I wouldn’t face any discrimination because of this, but I knew that it was going to be an emotional bombshell for each of these people, some of whom I had worked with for almost a decade. There were practical worries about who was going to do the various jobs I do. When was all this going to happen? What paperwork had to be filled out and when? How was money going to work out? And on...

I sat folks down separately and each telling was emotionally difficult and remarkable different. I started with Dennis Daniel who is the Comptroller and human resources guy. He's been a long time friend and was pretty shaken up by my news, but had lots of practical ideas and answers. Jeremy Greyzel, the CEO, who I’ve only known for two years and don’t socialize with outside the office was visibly emotional and concerned for my well being. Megan Strub, the publish and sister of POZ’s founder, Sean Strub, was very funny in a black humor way (much like my own sister) and she kept worrying that she was being inappropriate.

Megan made me laugh and laugh, and it was just what I needed. I ran out of emotional oomph before I got to every staff member. I felt bad because I didn’t want anyone to hear it second hand, but they might have to.

I remembered why I started the "Mark and Vinny E-mail Update" in the first place -- it was just too draining to tell and re-tell what was going on to all the folks that loved us.

Tuesday, October 11, 2006

It was after midnight, but Vinny called his sister, who was on the train back to Connecticut. Vinny used every ounce of self control to wait until 8 AM to call our doctor on his super-secret-private cell phone number that I have for real emergencies, bypassing the “service” and “doctor on call” process.

Paul (I like to be on first names with my doctors, it’s more friendly and colleague-like -- he's pictured on the right) agreed to check his schedule as soon as he got to the office and make time for Vinny and me to come in and talk. An hour later we got a call that the day was packed. We could come in at 4:30, but might have to wait around a bit.

Instead of going to work, I went back to bed for five more hours, which is what I really needed. I had just enough time to get on the computer and organize our questions and before heading down to Dr. Paul’s office in SoHo.

How long I had hepatitis C without knowing it? How could it get to be such a problem without us catching it sooner – we monitor things so closely? How might I have contracted it? If hepatitis C is an AIDS opportunistic infection, does that mean I now have AIDS? What changes should we make to keep Vinny safe?

To be honest, I don’t remember too much about the content of that meeting. Another advantage of written check lists: You can view your notes afterward. Here are those notes:

It's going to be difficult to know exactly how long I've had hepatitis C, since the hepatitis C antibody test is not reliable for HIVers with low T-cells (which I had). In fact, a study was just published this month that suggested that the hepatitis C antibody test is never very reliable for any HIVers. The hepatitis C viral load test is much better. I was supposed to have that run six months ago, but a clerical error caused the HIV viral load test to be ordered twice. Odd that the lab nor the insurance company nor Doctor Paul nor myself caught the error. We're all human and mistakes happen.

It's also going to be difficult to know exactly how I contracted the virus. Historically is was believed that hepatitis C is not sexually transmitted but requires direct blood exposure. Newer data suggests that this might not be so true, at least for gay men anymore. As my T-cells were on the low side for a while and I live in an area where lots of folks have hepatitis C, I might have gotten a little tainted blood exposure from poorly sterilized manicure/pedicure implements, or from creative recreational sex that would be "safe" from transmitting HIV but could still transmit hepatitis C. Paul said "There's just a lot of hepatitis C out there and a lot of ways of contracting it."

I know lots of ways I did NOT get it, but it's probably going to take a decade before the medical community has a better understanding of how hepatitis C is transmitted. For me, it will probably always be a mystery. As for keeping Vinny safe, we need to redouble our universal precautions. Since we're both HIV-positive with very similar HIV viruses, we've let our guard down. For example we'd been sharing a razor when away for an overnight, which we've now stopped.

Hepatitis C is an AIDS opportunistic infection, but it is not an AIDS-defining opportunistic infection, so no, I still only have HIV, not AIDS.

By the end of our meeting, we had a game plan, the details of which would be worked out with my new liver specialist, Dr. Leslie Seecoomar. Les treated Vinny for years and we both have a good rapport with him. It was beginning to look like I was going to have to take a medical leave from work to deal with all this.

Surprisingly, I felt empowered. I felt I understood the terrain. I filled a few more vials for more tests and we scheduled follow-up tests. Paul asked to see my checklist to make sure we covered everything and we went down each item with the short answer. More doctors should work like that. Paul gave both Vinny and me big bear hugs. I also got a Cipro prescription to deal with my throat infection, but that wasn’t as much fun as the hugs.

Monday, October 10, 2006

I'm not a doctor. The only medical training I've had has been from The Red Cross (which is great and I strongly suggest everyone get CPR and first aid training). The only credentials I have are from writing about HIV for 15 years, leading support groups and being a peer counselor for GMHC.

I like to joke with some newbie medical receptionist who asks me who my primary care physician is. I tell them “I am, but my insurance company thinks it’s Dr. Paul Chambliss.”

In terms of patient-empowerment, it's a very powerful idea to think of yourself as your primary care physician. And each of us has lots of advantages over some hired doctor. All of us have a much lighter case load (one patient, maybe two or more if you're a family) and a much narrower field of study (whatever diseases and conditions we have).

I know I certainly feel and know what’s going on in my body better than anyone else could. Of course, not being a medical specialist does have it’s disadvantages, which is why I rely so heavily on "consulting physicians" to help me. And I sometimes need to do a little extra internet research to get up to speed.

Over the years, I've gotten the doctors that Vinny and I work with to treat me almost like a colleague. I always got faxes of all my labs, faxed in (and later e-mailed) my questions and problems to make the most of face-to-face time. The HIPAA privacy laws have made some of this information flow more difficult.

It was now a full week after my annual physical, and I was becoming a very impatient patient. Why hadn’t my lab results been sent over to me as they came in? Hadn’t my labs come back yet?

“Yes they had, but the doctor needs to speak with you first” – that was the sort of answer civilians get. I dashed off a quick, somewhat grumpy e-mail to my doctor to resolve this clerical mistake, so I’d once again be granted the medical equivalent of VIP access.

It was NOT a clerical mistake. Dr. Paul really did want to talk with me before I read my reports. I was negative for all those exotic pathogens, but I had hepatitis C. I had been vaccinated against hepatitis A and hepatitis B, but what I had was unmistakably, verifiably hepatitis C. WOW, that was a surprise!

My first phone call would always be to my husband Vinny, but he and his sister Maria and our friend Michael were heading off to see Barbra Streisand live at Madison Square Garden. At $375 a ticket, my medical news could wait until he got home.

I know a lot about HIV, and a good bit about hepatitis B (which is what Vinny has been battling). But surprisingly, I knew almost nothing about hepatitis C, and I needed a crash course. Well, our own website, AIDSmeds.com, just happens to have one of the very best hepatitis C tutorials. I did more research and started my list of questions.

When Vinny got home, I heard all about the best concert ever and all the celebrities he ran into. He even stayed awake for the whole thing, which, if you know Vinny’s health these days, NEVER happens. When he was done glowing and gushing, I told him that I had some not so great news and sat him down. That was a hard conversation to have. Vinny had always been the patient and I was the caregiver. I wasn’t supposed to get sick. We talked for a while, but I just couldn’t stay awake anymore.

Tuesday, October 3, 2006

One of the themes of my book "Living Positively" is that HIV can be a chronic, manageable disease like diabetes or multiple sclerosis. Back when I started saying this, it was more wishful thinking than fact, but it’s becoming increasing true. The downside of all this is that just because we have HIV doesn’t mean that we are immune to all the other diseases and medical conditions that other folks get. Long-time HIVers like me are even more likely than the general population to develop some conditions like heart disease.

So, once a year I put aside my checklist of questions for my HIV doctor and replace it with a checklist for my general practitioner. Of course, since it's the same guy (Dr. Paul Chambliss) I don’t actually put them aside, but HIV stuff isn't the focus of our meeting.

My major issues for this year's general physical focused on my extreme fatigue, muscle pains, frequent infections, night sweats and migraine/sinus/allergy/chemical sensitivity problems.

Being in my 40s (okay, my MID-40s, I should never have told you guys I was born in 1960) I understand that natural aging accounts for some changes. But three years ago I was in buff gym shape and had lots of energy for life.

Whereas these days I have to take a two hour nap after work before I can walk the dog. The only time I feel well rested is on the weekends, when I sleep 14 to 16 hours a day. And I’m already on testosterone replacement therapy (androgel) and B-12 injections and my HIV viral load is undetectable, with 336 CD4 t-cells and a 43% ratio of CD4s to CD8s.

My list of things to rule out ranged from the “normal stuff” like anemia and low testosterone to the esoteric diseases like West Nile, Eastern Equine Encephalitis, Lyme Disease and heavy metal poisoning. I even asked if it could be any of those not well understood conditions that are so hard to diagnose like Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, or even 9/11 Syndrome (Vinny and I live in lower Manhattan and were here during the attack and the weeks after as the pile burned).

I bleed, as requested, into about a dozen color-coded vials and provide the other biohazard samples requested. It's sometimes hard to reconcile a positive body/self image with all those warning labels. And now I have to wait...

Monday, October 2, 2006

My name is Mark de Solla Price. That’s me on the right with husband Vinny Allegrini. I have been HIV-positive since at least 1983; Vinny has been HIV-positive since 1989, diagnosed with AIDS since 1995 and "end stage" liver disease (from hepatitis B) and a liver transplant candidate since 1999.

Vinny was even in hospice care for four years, but got kicked out a few months ago for not dying as scheduled "within weeks." We've been together for 14 years; we live in Greenwich Village with our dog Troika and we are active in fighting for equality for same sex marriage – but I’ll talk about that in a later blog entry.

Some of you might recognize my name as a long time HIV/AIDS activist, journalist and author from the pages of POZ, MarkandVinny.com, or my book, Living Positively in a World with HIV/AIDS. Or maybe you know me as the POZ and AIDSmeds website and computer guy. Or as Sean Strub's business partner in his marketing company.

If you’re "of a certain age," you might even remember me as the mailing list computer guy for Studio 54, Palladium, Area and The Tunnel. Oh, those were the days to see and be obscene.

More recently, you might have gotten naked with me (get your mind out of the gutter) for the Spencer Tunick art installation and photo shoot for the POZ tenth anniversary cover . That was a great experience, and Vinny and I are very proud of being an important part of the award winning HBO documentary, “Positively Naked,” made about that event. It will finally be broadcast on World AIDS Day, December 1, 2006 at 7 PM (6 PM Central) on Cinemax (which is owned by HBO).

I’ve been asked to write this blog for POZ not because of any of these colorful parts of my history, but because of something you probably don’t know about me yet...

During “Hepatitis C Awareness Week” (yes, really, October 1- 7, 2006, at least according to the Australian Hepatitis Council) I found out that in addition to being HIV-positive, I am now living with hepatitis C.

There are about to be some major changes in my life. A lot has happened over the last few days and a lot more will be coming up over the next few weeks. I’m going to use my computer super powers to turn back time a few weeks to post a few blog entries when they happened so I can start at the beginning of this latest chapter…