Mark and Vinny's Blog

On Christmas Eve my doctor called me with my latest diagnosis: I now also have Type 2 Diabetes. Going from an active life and 3-days-a-week at the gym to spending two years home-bound probably helped speed this genetic pre-disposition along.

Unfortunately, all of the usual oral diabetes medications are metabolized in the liver. Although I remain Hepatitis C undetectable viral load 64-weeks after treatment (yea!) my liver functions are still "wacky" from many factors including non-alcoholic fatty liver disease (NAFLD).

Luckily, there is a relatively new injectable diabetes medication drug exenatide (marketed as Byetta by Amylin Pharmaceuticals/Eli Lilly and Company) and for me it has been a wonder drug. After 90-days, my diabetes is well maintained and I've lost 15-pounds (of the 40-pounds I gained since starting Pegasys).

In my appointment with Marilyn Tucker-Viselli, my Dietician/Nutritionist, I proudly showed off the progress I've made on the graph of my glucose levels (my LifeScan OneTouch Ultra2 Blood Glucose Meter connect by USB cable to my MacBook and then to the HealthEngage) website.

Marilyn told me that Byetta is made from synthetic Gila Monster's saliva. Yup, I shoot-up twice each day with Gila Monster Spit, and I couldn't be happier to benefit from my new cold-blooded friend, pictured to the right.

On a spiritual level, it makes me realize just how interdependent I am with the web of all existence of which we are a part. How many other vital drugs are waiting in similarly unlikely species that we might loose forever as we endanger our planet.

It's not just that we might need what these creatures have to offer, they are part of who were are as living beings. I read recently that "Scientists estimate that 90 percent of the cells contained in the human body belong to nonhuman organisms - mostly bacteria, but also a smattering of fungi and other eensy entities. Some 100 trillion microbes nestle in niches from our teeth to our toes." (Colin Nickerson/The Boston Globe, February 25, 2008)

Vinny and I quite literally won the lottery this week and we got tickets from Time Warner Cable to watch the Presidential Inauguration of Barack Obama telecast at the legendary Apollo Theater in Harlem.

Since we weren't physically up for going to Washington, DC (not that we were invited), this is ideal venue that meets our physical limitations and our spiritual effervesce.

For this exciting, historic event and we can't think of a better community to celebrate not just the arrival of Barack Obama in the White House but also for the beginning of a new era of civic engagement!

Mark and Vinny Holiday Letter 2008

This last year has been a difficult one for our world, our country and us personally. As we write this, like so many others, we are looking to the new year as the start of an exciting future filled with new hope and new enthusiasm for fundamental change and renewed health -- both for us and our world. For us this begins in just over a month with the inauguration of President Barack Obama. We take great comfort in reading www.change.gov and watching Obama’s YouTube videos.

As we wrote last year, in December 2007, Mark completed a very difficult yearlong successful treatment for hepatitis C. Thankfully, he became one of the lucky few to be effectively cured. Unfortunately, in the process it put a lot of stress on his various underlying medical conditions caused by living with (and treating) HIV for 25 years. The original plan was that Mark would be able to go back to work early in 2008. But now in addition to AIDS and polycythemia, Mark has cardiac hypertrophy, peripheral and autonomic neuropathy, orthostatic hypotension, and chronic extreme fatigue. His HIV is still well controlled. Bouncing back and being well enough to return to work is something of a moving goal still off in the future right now.

Vinny’s unstoppable spirit is as strong as ever, but his body too is showing the effects of many long years of toxic treatments that are needed to keep him alive. Considering that it’s now eight years since he was diagnosed with “weeks to live” we really can’t complain. Although Vinny’s end-stage liver disease and related conditions are still incurable, in February Vinny had his shoulder replaced with titanium and ceramic, so his medical team must believe that he will last long enough to amortize the cost and effort of this high tech wonder. Over the summer, our long-time friend, physician and AIDS expert Dr. Paul Chambliss left his private practice and with great upheaval, we moved our multi-volume medical history over to Dr. Stuart Haber whose office is two blocks from our home. We didn’t think our health care could get much better, but it has.

We’ve continued our activism efforts in same-sex marriage equality. We’ve both become even more active at The Community Church of New York Unitarian Universalist, which has a long, proud history in social activism and has been intertwined with the ACLU, NAACP, UN, Mohandas Gandhi, and pro-peace work. The UU community not only celebrates our diversity, they are great at providing support for our special needs and limitations, so we’ve been able to do a lot this year:

Mark was elected Board of Trustees Chair of Community Church; we were both delegates at the weeklong Unitarian Universalist Association “General Assembly” in Ft. Lauderdale, FL in June (our first real trip since 2000); we both attended the weeklong Unitarian Universalist Team Institute in July/August at Juniata College, Huntingdon PA; after a fifteen-year hiatus, Vinny has been leading his “Seven Terrace Meditation” each month at Community Church with guided images through seven colorful gardens to help folks gain inner peace and healing for mind and body.

Please visit our website www.MarkandVinny.com for updates, more details, and all our various writings, meditation stuff, blogs, photos, videos, and even some meditation podcasts.

Mark de Solla Price Testimony on Friday, October 12, 2008 Public Hearings on New York City Term Limits Legislation

Good evening. My name is Mark de Solla Price; it is a privilege to speak before you tonight and thank you for your perseverance at this late hour. I have lived in Manhattan since 1980 and live with my husband, Vinny Allegrini, in our small, rent-stabilized apartment in Greenwich Village since 1994. I’m speaking today in favor of extending current terms to being limited at three terms. I want to thank the Speaker Christine Quinn and City Council for the opportunity to hear from so many constituents like me.

Thirty years ago, U.S. Senator Hubert Humphrey said that “...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.”

I am one of those people in the shadows of life. I have been living with HIV/AIDS since 1983 and have been medically disabled for the last two years. Vinny is also living with AIDS and on disability, but he is mainly homebound these days, so today, I’ll be speaking on his behalf as well.

Vinny and I are two of more than 100,000 people in New York City who are living with HIV or AIDS. That’s approximately 1 out of every 70 people in this city. In my part of town, it’s one out of every four gay men who are HIV-positive.

And the folks most at risk in a time of great change are the more fragile members of our city, people like Vinny and me; our seniors, our children’s education, everyone’s healthcare and public safety.

Because our great city is the financial capital of the world, we are going to be one of those hardest hit by this once-in-a-generation financial crisis. It might well be a “perfect storm” of Wall Street losses, raising costs, escalating climate crisis and global political challenges.

Our city’s elected political leaders will have to make unprecedented budget cuts for the next few years at the very least. We are not talking about merely some belt-tightening, a little trimming of fat or downsizing some programs. From a budget point of view, you folks are going to have to do what would have been unimaginable, unthinkable and inhumane only a year ago. And then we’re all going to have to work together to make it work, somehow.

Rather than take a hatchet to our city budget and have across the board cuts in all our programs, we need a scalpel to cut what we must, and save what we can, to build our best future together. That scalpel needs to be wielded by the most qualified and the most experienced elected officials both in this room and in the mayor’s office.

So who are those scalpel wielding political surgeons? As we all know, not only is our Mayor facing term limits in 2009, so too are two-thirds of our City Council members. I ask you to think about what effect that would have in this emergency situation. Now is not the time for on-the-job training and getting new folks up to speed. When the voters instituted two-term limits, it may well have been a great idea, but they could not have possibly foreseen the circumstances that we’d be in today. Is this really the time we want to lose our city’s remarkable leadership?

Mayor Mike Bloomberg is a compassionate pragmatist, a non-partisan, a titan of business, and one of the best mayors that this city has had in my lifetime. Our City Council is experience and one of the most effective and functional that we’ve seen in years.

One of the problems with being a voice of the disabled is that I am disabled. It is difficult for me to have the stamina to be here today. There are a lot of voices like Vinny’s who are not able to be here today, and I ask that you listen to them too, even in their absence.

As a Unitarian Universalist and the Board of Trustees chair of The Community Church of New York, I feel that it is my moral duty to advocate for the inherent worth and dignity of every person and to promote justice, equity and compassion in human relations.

A true democracy is like alcoholics anonymous, where there aren't really any leaders just trusted servants acting on the group consensus. But the United States is a republic, where citizens select leaders who work for the good of those citizens, but those leaders make their own choices based on their personal intelligence, information and ethics and not necessarily the consensus view of their constituents. The most important, bold work can never be achieved just through popular consensus.

As a liberal democrat, I urge you to be republican today -- with a lower-case “r” -- and to do the bold thing that is most definitely in the best interests of the city and the voters by extending term limits in this time of crisis and opportunity.

Thank you.

The Toledo Blade ran a story titled "Radicals of the '60s, '70s change with the times" on October 9, 2008, which got some hate mail that I found objectionable. I posted the following response:

If you believe in the theory of our justice system, as I do, then ex-offenders have already been justly punished for their crimes and hopefully are rehabilitated. It is our job as a just society, to help ex-offenders be constructive members of our society. That means working and living together with them. If they weren’t convicted (like Bill Ayers) then they must be assumed innocent. That’s our system. There are no throwaway people. Any other viewpoint is a self-fulfilling prophecy that causes recidivism.

As for Laura Whitehorn, not only has she paid her debt to society, the fact that after coming out of our unjust “justice system” she isn’t disillusioned, angry with society, and trained as a career criminal is a remarkable reflection of the quality of person she is. Instead, she’s been working tirelessly for the common good. That’s pretty uncommon. As an AIDS activist and author myself, I’m lucky to count Laura Whitehorn as a personal friend.

Don’t get me wrong, I don’t support all the radical activists’ actions from the 60s and 70s, but calling them “terrorists” isn’t very helpful. My mother joked that she was a “terrorist” in World War II in Copenhagen making daily life as difficult as possible for the occupying Nazis. I’m sure Harriet Tubman would have also been called a “terrorist” for her civil disobedience with the Underground Railroad and for women's suffrage. I know that there are sociopaths out there, but these folks certainly aren’t sociopaths. Their track records speaks for themselves. There is a lot wrong with our world, and we need all the help we can get to make things better. I too support Barack Obama for President, because the alternative for me is unthinkable.

-- Mark de Solla Price, New York, NY

Well, I've taken WELL OVER 1,000,000 HIV/AIDS pills in my life and countless shots and procedures. Thanks to to speedy diagnosis hepatitis C genotype 1a/1b and polycythemia 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?

Before starting Hep C treatment, I had so much fatigue that I couldn't function, and I was ready to try anything. I had expected these additional treatments to be "more of the same" -- sure, with their unique side effects and related nastiness.

Hep C treatment, for me, was much more like chemotherapy. I've spent 60%+ of the last year sick at home. I can't imagine folks who can work through this, or care for kids, or even keep active in a hobby.

My T-cells went from 450 to 83 or less

On Halloween 2007, I had my blood test (pretty normal stuff) and I had ALL THREE of my Doctors (Paul Chambliss, Leslie Seecoomar and Randy Levine) ALL called me urgently. I had never seen lab reports that actually had a bold and underlined "Alert" message.

Within 24 hours, I had gotten messengered over $10,000 for ten syringes of Neupogen, that would boost my white blood cells just enough to keep going with the toxic treatments.

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

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…

Sunday, March 23, 2003

Well, tonight might be Oscar night in Hollywood, but the really spectacular ball gowns, really big hair and jewels that would have made Liberace envious were last night here in New York at the [http://www.imperialcourtny.org/ Imperial Court of New York's] "Night of 1000 Gowns" drag queen ball. This annual eight-hour charity event is a formal dinner dance, pageant and "coronation" at the [http://marriott.com/property/propertypage/nycmq Marriott Marquis hotel]. This year to bennefit be [http://www.broadwaycares.org/ Broadway Cares/Equity Fights AIDS].

This magical night is organized by our best friend Coco LaChine (Charles Ching) and is always the high point of Vinny's social calendar, and this year's ball was [http://www.printroom.com/ViewAlbumPhoto.asp?userid=metamorphics&album_id=136419&image_id=20 in Coco's honor], so it was especially important to Vinny that he could attend. I am trilled to report that with Vinny's amazing sheer willpower and determination, my careful planning, and a lot of assistance, Vinny *DID* attended and we have [http://www.printroom.com/ViewAlbum.asp?userid=metamorphics&album_id=136419 photos to share!] '''<<< THIS LINK IS NOT YET TO THE NEW SITE'''

We dined at the head table with the guest of honor [http://www.amfar.org/cgi-bin/iowa/amfar/record.html?record=37 Dr. Mathilda Krim] (founder of [http://www.amfar.org/ amfAR]), socialized with lots of old friends including Rick Ford and Rafael Holguin from [http://www.allworldsresort.com/ All World Video and Resorts], we got filmed and photographed, and we even danced together for a romantic slow song without falling off the stage!

If you ask Vinny, he'll say he's doing just fine everyday and things are always getting better, but frankly, these last many weeks have been rough for him. He is remarkable and keeps in good spirits and forever optimistic, but his levels of stamina, energy, mental focus and general life function are all way down. His bad times are more frequent and more severe and his symptoms are worse.

Vinny's belly has become even more distended, now up to 50 inches (127 cm) from his former 32 inches (81 cm) waistline. This swelling makes it impossible for him to take full breaths, but being on oxygen for many hours each day whenever he's resting helps compensate. Mechanically, he has many of the same problems as someone who is nine months pregnant. Sitting down or standing up requires assistance, it is difficult to get comfortable when lying down, regular clothes don't fit, roll up or down, or hurt with too strong an elastic waistband.

A more serious issue is that the muscles in the entire length of his gastrointestinal track have substantially atrophied, so Vinny often has great difficulty drinking and swallowing and generally, needs his waste matter cleansed out with colonic irrigation at least once a day, and sometimes more. Messy and not a lot of fun, but it works and is essential to life, so we do it.

Vinny doesn't have a lot of stamina and can only do things in short bursts before resting. Unfortunately, he only tends to rest in short bursts too, which means after two hours of sleep, he's up and feels ready to go. When he's up and down like that all day and night, he just doesn't get the deep sleep he needs to really heal and recover. It's remarkable what a few good night's worth of sleep and do for him (and me!). That's really the biggest factor in good days vs. bad days.

Naturally, lots of Vinny's parts hurt or ache a lot of the time, especially his feet. The muscles in Vinny's feet knot in painful spasms, and even with the morphine, the only thing that works is extended deep tissue foot massage with moisturizer, which seems to do the trick. Luckily, I've gotten pretty good at foot massage / reflexology and the wonderful folks at [http://www.kiehls.com/ Keihl's] have given Vinny a life-time supply "Crème de Corps" moisturizer, lip balm, and other miracle products that help keep him comfortable.

I also give Vinny morphine for pain management. This helps with his breathing too and lets him get much needed rest. With all the safeguards and timed release high-tech drugs nowadays, the packaging of this very powerful (and dangerous) drug is very low-tech and seems like something out of a Victorian age Apothecary. "Roxanol" is a liquid in a small brown glass bottle with a medicine dropper. Five drops right on the tongue.

On most days, an outing like lunch at a local place is all that Vinny has the oomph for. Yesterday morning, I just wasn't so sure Vinny was going to be able to make the ball after all. But he was like a kid on Christmas Day and from about 4 AM on he wanted to start getting ready. I battled to get every five minutes of his resting I could. I had to keep battling him not to go for a walk or do all the things that would have worn him out.

At about 2 PM I finally gave in and I got Vinny into the shower and got him cleansed out internally and shampooed and scrubbed down. After a little nap and oxygen, we got him dressed in baggy silk pants, a wonderful cowl turtle neck, and a vintage dragon long silk robe, worn open, which was a gift from a local friend and merchant Wanda from "O Mistress Mine" a marvelous vintage shop. In center of Vinny's chest he displayed the official jeweled medal from Coco's Court, a red-and-gold dragon pin, a gift from Coco. He looked WONDERFUL.

We then took a taxi to the Marriott Marquis hotel and went up to Coco's hotel room, which would be our rest area for the event. I took along a portable oxygen tank with mask and packed a huge suitcase of supplies for the campaign. It had morphine and all the other possible drugs and creams we might need for various possibilities, bananas for anti-nausea, extra bottles of water, a change of clothes and a robe, various toiletries, and a foot massage "kit" with towel, moisturizer, gloves. Everything we might need, except the one thing we actually DID end up needing: a safety pin, but luckily drag queens pack more sensibly.

And in case things didn't go well, I had all the medical paperwork with the list of drugs (over 30 prescriptions and counting), health care proxy (Vinny appointing me as his medical power of attorney), paperwork from the hospice, and do not resuscitate letter from our doctor. Kind of a scary packet, but if something went wrong in such a public place, it might be difficult to even get Vinny home by taxi if the authorities wanted to have him ambulanced to some strange hospital.

At 4:30 we got to Coco's "hotel room" on the 45th floor above the ball and it was actually a grand hospitality suite about ten times larger than our apartment (see photos) with a marble bath, shower, toilet, bidet, walk-in closet, and a total of four sitting areas and full kitchen. I want to live like that. Vinny was in a party mood, but he agreed that resting on the royal bed with a little oxygen seemed like a good idea, and this made all the difference to the night. I think it gave more than one drag queen a shock to see Vinny on resting oxygen, but I kept assuring them that he was just fine.

Coco went down to the ball at 6 and shortly afterward this very handsome man came in looking for Coco and then he changed into his tux. This turned out to be "John" who was Coco's date for the evening (and for some other evenings, I'm told). A really nice guy who Vinny and I spent much of the evening with.

We took the glass elevators down about 40 floors to the ballroom level and made our grand entrance. Lots of cheery hellos and people watching. We commented on all the spectacularly wonderful and over-the-top unfortunate outfits of the evening. We took one of the few tables, as Vinny's not so great at standing in one place. By 7:30, we were back to the suite for a quick rest with oxygen and down again a little after 8 and went directly to our table.

We were once again at the head table, this year with Coco, John, Nicole, a few others, and the guest of honor, Dr. Mathilda Krim, founder of amfAR, the American Foundation for AIDS Research. In the photo you can see Dr. Krim's blue "Presidential Medal of Freedom" -- that's the highest civilian honor in the United States, pretty cool for AIDS work.

At the next table over was Coco's new employer and benefactor, Rick Ford, the owner of All World Video and Resorts, and Rick's dashing lover, Rafael Holguin, who is one of their primary video directors in the All World Video studio.

One of the few drawbacks in an evening like this, is that there is a lot of "standing to honor" up and down. I tried to convince Vinny he really didn't have to stand EVERY single time, but he insisted, so with much effort, he STOOD EVERY SINGLE TIME. In case any of you don't know, I'm married to a very pig headed man. But that's probably why he's still alive after all he's had to deal with, so I guess it's okay .

As the evening's pageant progressed, we shuttled back and forth to Coco's suite in those great glass elevators. We told the various folks that we kept passing along the way that we were heading back upstairs to have sex again -- oh I wish that this WAS the reason!

Unfortunately, just as Coco was going up for her final costume change just before 11 PM, Vinny was on empty. He had made it a lot longer than either of us had thought, but this was past time. We said our hasty goodbyes and I piloted Vinny once again through the sea of ball down trains and associated traffic back up to the suite and then off to a taxi home.

Except that this was after-theater time at Times Square and there were very long lines for taxis with no place to sit. Since we had no other choice, I held Vinny up with both hands, the duffel bag over my shoulder, the oxygen tank wheeled behind us and walked Vinny the four blocks to the subway and down four flights of stairs.

With all the terror alerts more than a few police folks and others looked carefully at the large duffel bag and gas tank I had with. That last block and half from our subway stop to the apartment were VERY long last night. Vinny's knees were buckling out from under him, but I got him home.

He had done it. He had gone to the ball and made it home. He was asleep before I got him undressed. And it's going to take a couple of days to rest up, but once again, he dazzled them at the grandest ball of all.

You can check out our photos from this year's "Night of 1000 Gowns" 2003 at:
http://www.printroom.com/ViewAlbum.asp?userid=metamorphics&album_id=136419

And for those of you who have missed them from prior years:

"Night of 1000 Gowns" 2002
http://www.printroom.com/ViewAlbum.asp?userid=metamorphics&album_id=136340

"Night of 1000 Gowns" 2001
http://www.printroom.com/ViewAlbum.asp?userid=metamorphics&album_id=136339

REMEMBER to visit Vinny's website http://www.metamorphics.com/vinny/ for the latest news, pictures, and goings on.

Even with insurance, it sure is expensive to provide the level of home health care that Vinny needs these days. Since last e-mail, in chronological order we'd like to thank the following for their generous financial support: Brad Peebles, James Dale, Tim Murphy, Megan Strub, Erica Stien, Edwina Trentham, Suzanne Hopgood, Dede Kirby Hatheway, Brabara Israel, Lynne Friedman, Greg Smith, Nancy Yoksza, Jane Nadel-Klein, Sean O'Brien Strub, Elizabeth Kincaid-Ehlers, Agnes Burkart, Laura Hannon, Gary Blunt and Shannon Cooney from "Kiehl's Since 1851"

And of course the folks we thanked last time who helped get us this far: Andrew Kirtzman, Sean Strub, Larry Kramer, David Barton, Henry Scott, Andrew Tobias, Dick Scanlan, Trey Speegle, Corey Zucker, Suzanne Golden, Don Israel, Jeff Hoover, POZ Magazine/ Smart + Strong, Susan Hays, Cathy Parsons, Laura Hannon, Michael Workstel, John Catlett, Joan Turner, Martha Bellieveau, Mary Curtin, Cathy Parsons, our Aunt Joan & Uncle Norman Cravitz, Susan Hays, Don & Ondree Israel / Benefit Concepts Systems, Andrew Kirtzman (again!), Rod Renfrew, Krista Gromalski, Matthew Levine, William Epperson, Ava Lev, Josephine Johnson, Judy Lobis, Alec Bentley, Andrea Levy, and Howard Grossman / Polari Medical Group.

I don't know how we'd make it through all this without your calls, notes, cards, e-mails, hugs, flowers, prayers and of course, for those that wish to and are able, financial contributions really help too. You can give on-line from our website ( http://www.metamorphics.com/vinny ) or you can send old-fashioned checks payable to "Metamorphics Corporation" (see address below)

Since Vinny rarely gets out, YOUR HOUSE VISITS ARE WONDERFUL -- those of you who have come over for a few hours to the house with all sorts of creative gifts to cheer Vinny along -- you have really given something very special to both Vinny and I, and I would strongly encourage visiting us here, if it's something you'd like to do. Thank you!

Love, Mark and Vinny

============================================================

You're receiving this e-mail because you are on Mark & Vinny's personal address book or have requested to receive the "Vinny Update" e-mails or have made a financial contribution to help with Vinny's care.

Please PASS THIS ALONG to others who might be interested as well, especially those WITHOUT direct Internet access themselves.

You can read all our past "Vinny Updates" archive at a new location [[Mark and Vinny Updates]] (it's still under construction): www.metamorphics.com/vinny/update/

If you'd like to make sure to receive these updates in the future, [http://www.markandvinny.com/list/?p=subscribe&id=1 Subscribe here]
just send reply with SUBSCRIBE in the subject line or if you would like to be REMOVED, just send reply with UNSUBSCRIBE in the subject line.

To send a personal e-mail to Vinny Allegrini:

vinny@MarkandVinny.com vinny@metamorphics.com

To send a personal e-mail to Mark de Solla Price:

mark@MarkandVinny.com mark@metamorphics.com

Our mailing and delivery address FOR EVERYTHING is:

332 Bleecker Street PMB 212

New York, NY 10014-2980 USA

NOTE: THIS IS NOT OUR HOME ADDRESS.

If you're coming for a visit, call us for that information.

Mark's Phone: 212-924-1845 (rings through to his mobile)

Vinny's Phone: 212-924-5759 (rings through to his mobile)

Fax: 212-253-4053

==========================================================

Wednesday, March 05, 2003

I felt like being chatty, but it's always so tough to talk, so I though I'd e-mail...

Vinny had a rough morning and was able to be awake for most of Karen's in-home social work appointment. We all clear out to give him some privacy. When I came back from banishment at the coffee house, Karen had said the he had only excused him self a few minutes before to lay down. She was a little shook up as she hadn't seem him so frial.

After an hour's nap, Vinny bounced up and insisted that he was still up for our "wouldn't it be nice to have lunch at Serendipity, if you're up to it on Wednesday" lunch. It's a place dear to both Vinny and my heart. We've both taken our neices, siblings, lovers, and parents there and we had planned to have a romantic lunch their on Vinny/s birthday last year on 9/11/2001, but the world had other plans for that day. This day wasn't a great choice either, but you KNOW it wasn't possible to convince him that some other day might be better.

So we taxi'ed up to East 60th Street and Third Avenue (he slept), we had a lovely lunch (most of his in now in the fridge) and the made a fuss of his visit (they opened in 1954 and Vinny started going in 1967 and is the same age as the manager who has known him for years) but Vinny was clearly physically very uncomfortable and having difficulty breathing. I got him home okay and his did his first of today's colonic cleansings, which worked a little bit, but he's still VERY distended and now resting with Oxygen and I don't think yet another dose of morphine is too far off.

I don't need to tell you that Vinny's certainly lost a lot of ground these last many days, but I do wonder just how much longer this can go on. I keep thinking it can't get worse and have him still keep going, but then it does, so I guess I better just stop saying it.

Nicole has the day off, so I'm home-bound as well. John Thompson will come by and we'll do some project managment work and eventually translaces into some much needed billings and will help solve this month's month's money crises. Month after month I just don't know how we're going to be able to keep on, and somehow, the money comes in and we just do

I don't know what is scarier: that Vinny might die today or tonorrow, or that it could go on like this for a very long time...

-- Mark

Monday, January 27, 2003

Two Trips Out of the Apartment for Vinny: He's Filmed, Immortalized and Museumed

Vinny was filmed today by a TV crew at Howard Grossman's office for a bit about medical marijuana for MPP.org and maybe a PBS thing too. Vinny's amazing. He can reach down and summoning the will power to pull it together and he looked and sounded great. And it got out of the house with help from me and Nicole, his wonderful 8-hours-per-day home health care aide (I don't know how either of us would get along without her). Now he's fast asleep on oxygen and out of it for the day (or two). But he looked like a movie star when the camera was on -- it really is amazing that he can still do that. They will let me know about air dates, etc.

When we were at Howard's office (Vinny doesn't have doctor's appointments anymore -- one nice plus with hospice care) we saw in the office a new work by Barton Benes -- a large reliquary with two notable (to use) compartments. One with a rubber band used on one of Vinny's twelve endoscopic banding procedures and retrieved when it passed (we were worried at the time that it wasn't normal to find blue rubber things in one stool), the other with dose of Serostim, which I estimated at costing $96,000 per year. A third section had Kevin O'Leary's band aide from his first (negative) HIV test. Lots of other familiar names in the other boxes too.

This was the first time that Vinny made it into Barton's immortality -- it felt kind of strange, given all of what's going on. Howard asked if Vinny would rather it wasn't in the medical office, with his name and all. Vinny replied that he was proud to be there. And so was I. We also got a very nice check from Howard for the "taking care of Vinny fund" and that really helps at a expensive time and Howard give Vinny a copy of "NYC Pet Project" a coffee table book which had a picture of the whole doctor's office staff with Nikko, Howard's bullmastiff / lap dog.

The dog book kind of made me sad, as Vinny spent the summer and fall saying he had to get well enough to get a puppy for Christmas, and instead on his few good days he goes for a walk with his hospice nurse to the corner pet store to look at the puppies in the window, but a dog is just out of the question for now.

At the end of last week, Vinny was so stir crazy with being shut-in and it being so cold outside. Vinny was feeling pretty good and he hasn't been out of the house any further than to Manatus (the gourmet dinner on the corner) since my brother's wedding on 12/29/03. On top of all that, I worked a quite bit the last few days and I think Vinny was feeling stranded, unable to do even the usual homebound stuff like watching TV or reading.

I decided that we needed some nice weather NOW, so I took Vinny and the Wonderful Nicole by Taxi to the [http://www.metmuseum.org/ Metropolitan Museum] to have a nice long walk in the various sunny, warm, wind-free courtyards. Nothing to do with looking at art, just enjoying the indoor weather and serenity. We got a cab right off, but just the trip in the taxi was too much -- but he so wanted to be going out, so we went anyway. From taxi to wheelchair, and wheeled though the [http://www.metmuseum.org/explore/newegypt/htm/wk_dend.htm Temple of Dendur], through the American Wing, stopping off at another men's room, into the cafe for half a sandwich, rolling on thought the Islamic wing, detouring via the Chinese Astor Court, and after one more stop at the men's room, Vinny couldn't stay awake for too much of it and was even too tired to really appreciate being out of the house. After two hours and $100 later, we got from taxi to wheelchair back to taxi and got him manhandled back into being on oxygen. And it took a couple of days to recover from having such a wild time.

The nurse left at the end of the day, and was a long night here. I first stopped off to the video store to have something fun to watch while I'm on-duty. Gregory will keep an eye on Vinny while I'm out and maybe I'll have a bubble bath before he's leaves for a bit. But I'm pretty tired myself, so there's not to much in store for my night. Vinny was insistent that he wanted peas and carrots with his oatmeal for dinner, but hopefully he'll forget about that and I can sneak him either apple-cinnamon-raisin oatmeal (my home-cooked speciality) or pureed vegetable soup with peas and carrots...

REMEMBER to visit Vinny's website http://www.metamorphics.com/vinny/ for the latest news, pictures, and goings on.

Sorry to say that we *STILL* have haven't had any time to sit down and thank so many of you personally (as I want to do really soon and plan to on Tuesday) for generously clicking through to Vinny's website http://www.metamorphics.com/vinny/ or send an old-fashioned check to us to help out with all the expenses. It's made Vinny and I feel very loved by our community, not to mention able to keep the phone and lights on, pay the new calendar year deductibles, and keep us all fed. We'd like to thank, in addition to our terrific biological families, Nicole (our 8-hours-per-day home health aide) and Gregory Dean who's been invaluable:

Since last e-mail, in chronological order we'd like to thank: Susan Hays, Don & Ondree Israel / Benefit Concepts Systems, Andrew Kirtzman (again!), Rod Renfrew, Krista Gromalski, Matthew Levine, William Epperson, Ava Lev, Josephine Johnson, Judy Lobis, Alec Bentley, Andrea Levy, Howard Grossman / Polari Medical Group.

And of course the folks we thanked last time who helped get us this far: Andrew Kirtzman, Sean Strub, Larry Kramer, David Barton, Henry Scott, Andrew Tobias, Dick Scanlan, Trey Speegle, Corey Zucker, Suzanne Golden, Don Israel, Jeff Hoover, POZ Magazine/ Smart + Strong, Susan Hays, Cathy Parsons, Laura Hannon, Michael Workstel, John Catlett, Joan Turner, Martha Bellieveau, Mary Curtin, Cathy Parsons, and our Aunt Joan & Uncle Norman Cravitz from England who just celebrated their golden wedding together!

What a great bunch of folks we know -- and some we don't know too well, but who are friends of Sean's (again, thanks Sean!). I don't know what we would have done without all this help. It's been such a long battle, and emergency last-ditch reserves (both financially and emotionally) have been used up long ago.

I feel a little greedy asking, but I don't know how we'd make it through all this without your calls, notes, cards, e-mails, hugs, flowers, prayers, helping with errands and of course, those financial PayPal donations (click here ) and old-fashioned checks payable to "Metamorphics Corporation" It's made a LOT of difference to not just getting by, but the level of comfort that we could give Vinny.

Since Vinny rarely gets out, YOUR HOUSE VISITS ARE WONDERFUL -- those of you who have coming over for a few hours to the house with all sorts of creative gifts to cheer Vinny along -- you have really given something very special to both Vinny and I, and I would strongly encourage visiting us here, if it's something you'd like to do. Thank you!

Love, Mark and Vinny

Sunday, January 19, 2003

It's been three weeks since WE started being cared for by the Jacob
Perlow Hospice (I say "WE" because they work with the whole
teem facing a terminal illness). It's been some rough going, but it was
certainly the right choice and Vinny's doing much better because of it,
so I thought I'd send out an update.

We've had a lot of home visits from our hospice nurse, Kim, our social worker, Karen and Cathy our guardian angle, Vinny's new physical therapist Paul and together, we made some changes for Vinny's care.

We've switched over to liquid morphine for pain management and they brought over all the equipment (there's a lot) so Vinny can be on Oxygen
while he's resting. With this combination, Vinny has been resting MUCH
more comfortably and is able to finally get some much needed rest (and so
have Gregory and I). And, as I've said so many times before, Vinny has
amazing determination and ability to heal, so getting these hours of
quality rest has done wonders, and Vinny has been up for a number of
visitors and lots of phone calls, all of which really boosts his spirits.
(he's love even more) Good days are good!

I find it also very comforting to know that I can call the Hospice at any
hour of the night, if I'm not sure exactly what to do when Vinny's having
a difficult time. I know a lot of medical knowledge about stuff that
effects Vinny and me, but sometimes I need nurse-know-how for things like
how to get the tubes from becoming un-stuck in the night from the oxygen
machine. Some times it's a judgement call of what to do for Vinny, given
that each thing has a plus and a minus, and it's never apples-to-apples
or oranges-to-oranges, so you have to weigh the importance of Vinny's
thinking clearly tomorrow morning vs. his level of hurting tonight.
Hospice has helped me make Vinny much more comfortable with all sorts of
practical suggestions and made me feel better too.

This week also marks when our home health benefits would have expired
under the old plan, and I don't know what we would have done. Luckily, as
we're now under the "hospice" section, not only do we have no
fixed limit to home care, they are able to give us A LOT more services
and we could have dreamed of being covered. For example, we now have
Niccola, our dynamo of a home health care aide from Grenada, West Indies
for EIGHT HOURS each day, Monday through Friday (instead of just three
hours). Because if Vinny's special needs, everything has to be cleaned
and disinfected to a higher standard than any normal home. With those
extra hours, not only can this deep cleaning be done daily, it makes all
the difference in the world. I can catch up on sleep, run errands, walk
with Vinny, and even get in enough billable consulting hours to not get
to much further in debt. For the first time in ages, I feel like we're in
a sustainable situation, at least for now.

Yesterday, we discovered a new leak in the bedroom closet next to Vinny's
bed which has covered the whole area in mold (not good for anyone's
bedroom. let alone someone in Vinny's state). But we're lucky to have a
wonderful landlord who is coming by first things Monday WITH a contractor
-- how's that for responsiveness -- and we'll try to do the least
invasive patch-job, but if it's more serious, Vinny and I may have to
relocate to my friend Charles Ching's (a/k/a Coco La Chine's) apartment a
few blocks away while the loudest, dirtiest, and smelliest emergency
repairs are made to our bedroom. Luckily, Coco is in California, so we
would have ample space if we had to move Vinny and all his medical stuff.
(hopefully, it won't be needed. If it is, our phone numbers and e-mails
follow us).

Also, at this point, I think we have to pretty much give up on the
possibility of getting out to San Diego / Palm Springs next month. It
would have been so nice, but it's just too much for now. Hopefully we'll
do something else fun soon...

I haven't had any time to sit down and thank so many of you personally
(as I want to do really soon) for generously clicking through to www.metamorphics.com/vinny or send an old-fashioned check to us to help out with all the expenses. It's made Vinny and I feel very loved by our community, not to mention able to keep the phone and lights on, pay the new calendar year deductibles, and keep us all fed. In chronological order, we'd like to thank, in addition to our terrific biological families and Gregory Dean who's been invaludable:

Andrew Kirtzman, Sean Strub, Larry Kramer, David Barton, Henry Scott, Andrew Tobias, Dick Scanlan, Trey Speegle, Corey Zucker, Suzanne Golden, Don Israel, Jeff Hoover, POZ Magazine/ Smart + Strong, Susan Hays, Cathy Parsons, Laura Hannon, Michael Workstel, John Catlett, Joan Turner, Martha Bellieveau, Mary Curtin, Cathy Parsons, Laura Hannon, and our Aunt Joan & Uncle Norman Cravitz from England who just celebrated their golden wedding together!.

Your calls, visits, cards, prayers, helping hands and financial contributions all make a lot of difference. Thank you!

And do visit http://www.metamorphics.com/vinny to read the latest.

Love, Mark and Vinny

Wednesday, January 01, 2003

== Helping With Vinny's Hospice Care ==

Well, it's been a very long time since our last "Vinny Update" and today seemed like a particularly good day to catch everybody up, for various reasons.

As many of you know, Vinny has had a particularly rough time over the last few months. He's had to be hospitalized a few times and frankly we've lost a lot of ground on a number of fronts, and yet a liver transplant is NOT likely to be a possibility, nor do we have other medical treatment options.

He has had a lot of bad days (and especially bad nights) and been pretty much homebound for the last two months. I'm caring for him at home with the help of a great team. Our doctors have been wonderful, especially Dr. Paul Chambliss, who came by our apartment for an actual, old fashioned house call on New Year's Eve. We also have Nichola, our home health care aide for three hours each morning, Marcus a 26-year-old mega-hunk (but straight and engaged!) physical therapist who does wonders three-times-per-week, and Gregory Dean, Vinny's ex-, who is temporarily camped out on our living room sofa to complete the 24/7 coverage.

Given all this love and support -- along with Vinny's perennial ability to beat the odds and rebound using his amazing self-healing powers and sheer determination -- we're planning on (or at least hoping for) Vinny being well enough by mid-February to still go on our planned vacation to San Diego and Palm Springs (thanks to those frequent flyer miles!).

But we've changed our focus from medical treatment to providing Vinny comfort and relieving his symptoms, and so at our doctor's suggestion, we've have just today become clients of the Jacob Perlow Hospice, a home care unit of Beth Israel Hospital. They seem like really great people and they provide various forms of support (including taking over various medical home health care needs) and help us to keep Vinny staying here, comfortable in our wonderful little home and avoid further hospitalization.

So many of you have asked if there is anything you can do to help. Thank you for all your love, hugs and support. There are a lot of little chores that we might be able to use a little help with, so if you're in the area and might be interested in helping out, send me an e-mail (see below).

Also, even with insurance, it sure is expensive to provide the level of home health care that Vinny needs these days, so if you'd like to send us an on-line financial contribution for ANY amount, just visit: http://www.metamorphics.com/vinny and then click the "Make A Donation" button and fill out the form using the "PayPal" on-line payment system and your favorite credit card, or you can send a check payable to Metamorphics at the address below. Thanks

Love, Mark and Vinny

Thursday, May 16, 2002

Last Friday, for the first time in almost two years, Vinny and I were walking along Sixth Avenue and Vinny had an episode of encephalopathy. He had been hospitalized twice before for this. Encephalopathy is when toxins build up in the bloodstream and aren't filtered out by the liver.

Episodes can range from simple visual tremors, disorientation, and loss of balance to shaking uncontrollably and even coma or death. Encephalopathy can usually be treated effectively.

Naturally, Vinny and I both felt pretty frightened by this renewed experience. Vinny increased his dosage of Kristalose which fights the toxin buildup in his blood. We've consulted with two of our favorite doctors, Paul and Les, and had tests run, and the encephalopathy is back in check and the blood work remarkably strong, but the experience is not forgotten.

To be honest, this whole episode has made Vinny reconsider all the battles he fights to stay alive and well. Each day he must take over 70 pills distributed into 6 doses, some with food, others without. Each day there are also 4 or 5 nasty drink powders, plus 1 package of gel that gets rubbed all over the abdomen, then up to 4 injections a week.

Vinny’s liver transplant seems to be an ever receding target that keeps being pushed back again and again after we cross hurdle after hurdle. And I'm sure you've all read about the donor death and other serious problems at Mount Sinai.

Well, given all this, it just doesn't seem to be worth the huge on-going effort to continue in the transplant program, especially since the odds of us actually getting to the top of “the list” are quite remote.

I know some of you may be surprised at our closing off many future options, but keeping in the program takes a great effort, and it’s much more important to spend that time and energy on the things that we know have helped Vinny stay remarkably healthy, centered, and alive -- and to really live NOW.

A lot of heart and soul has gone into this decision, and we’re excited about moving forward, but we’re also grateful to those that have helped us get this far.

Vinny certainly wouldn't still be around if it wasn't for the wonderful care of his doctors: Howard Grossman, Paul Chambliss, George Haroutiounian and Leslie Seecoomar, and the sage advise of Lark Lands, Ph.D. We'd also like to thank his Mount Sinai guardian angel, Dr. Leona Kim-Schluger, for her kindness and compassion; Phyllis Boynton, our transplant case manager at Health Net, our insurance company, for her endless hours of effort, and genuine concern for getting him the best possible care anywhere. Without Phyllis, we never would have made it through the insurance maze.

Thanks to all of you for your love and support,

Vinny & Mark

Saturday, April 06, 2002

Hi Everyone:

GOOD NEWS! Yesterday we had our every-two-month-full-day at Mount Sinai. We started with a CT SCAN, then met with Dr. Leona Kim-Schluger (my hero). She explained the details about the much publicized Mount Sinai Transplant program problems -- and more than restored my confidence! The live-donor program should be back up and running in September, and both the cadaveric,and HIV-recipient transplant programs are continuing to be unaffected.

It was also confirmed that the lesion in my liver that had been presumptively diagnosed as liver cancer is NOT cancer since it has been exactly unchanged for over a year. Great news for my diagnosis, although it does push us further down on the transplant list -- but who cares as long as I'm so healthy as to not need one yet.

We then met with Dr. Anthony Squire for a cardiogram and ultrasound. Tony is a great guy, funny and one of the best cardiologist in town. I especially like him because he works out regularly, runs, wares black, and is ALMOST my age. Okay, as I like to joke, if I were driving a car he would be sitting in the back seat (he's 52, so just a few months younger than I am).

His official opinion is that I HAVE A GREAT HEART and I know that this is, at least in part, because of the love and support from ALL YOU FOLKS. Thanks!

Love, Vinny

Saturday, February 02, 2002

In a couple of days, we'll update everyone on all the news from our multiple meeting with Vinny's Mount Sinai Transplant team.

But since today *IS* Groundhog Day, I thought we'd take a moment out to celebrate this quirky American ritual of animal divination.

As you may know, every February 2, the local villagers (these days accompanied now with an army of media folks and mobile satellite up-links) gather at Gobbler's Knob, a wooded knoll just outside of Punxsutawney, Pennsylvania, and await for "Punxsutawney Phil" the amazing Groundhog augury. Residents contend that the groundhog has never been wrong.

Punxsutawney Phil *DID* see his shadow this year, so it means 6 more weeks of winter. As you know if Phil had not seen his shadow, spring weather would have been right around the corner. For more information, check out the official website:

http://www.groundhog.org/

-- Mark & Vinny

Friday, January 25, 2002

We're happy to report that Vinny's Endoscopy went very smoothly this morning.

There are *NO* esophageal varices -- which is great news -- although they DID find a bunch of gastric varices the size of a small bunch of grapes. Because of these, we did a follow-up ultra-sound to make sure that the TIPS liver bypass shunt was still working well -- and it's still looking as good as new after almost two years -- which is pretty great considering that many start having problems after six months.

Unfortunately, there really aren't any great treatment options for stomach varices, but luckily they don't tend to bleed as easily, and so for now, we'll just monitor them.

Also, this week we got FIVE potential live liver donors calling as a result of the newest item in POZ -- far too early to know if any of them will qualify or actually want to do it then they know more, but it's certainly encouraging.

Next week Vinny has his routine CT Scan and two separate meeting with senior transplant folks at Mount Sinai -- and we should know more after all these are over...

-- Mark & Vinny

Friday, September 21, 2001

Vinny and I just got back from an other full day at Mount Sinai -- our first in-person meeting since we lost his donor -- and frankly, the news was pretty depressing and discouraging.

We began our day with a 5:45 AM wake-up call and then headed the hundred or so blocks uptown to Mount Sinai Medical Center. Because of last week's attacks, all the usual entrances to the many-block long facility were sealed off and every one had to enter through the high-security main entrance and navigate the maze of tunnels and corridors to the various buildings underground for our tests and consultations.

Under the circumstances, it's easy to cooperate with all the heightened security and the delays. We can once again walk from our home to the doctor's office without going through police check-points, and Federal Express is largely back on track and the various blood tests can be sent out and medicine can now get through again. All forms of electronic communication and commerce are still pretty spotty, but getting better.

We met with the various senior medical team members, and they were very friendly and supportive, but without having a living donor, it isn't very likely that we'll get to the top of the list to receive a cadaver-donated liver without Vinny getting too sick and disqualified as a viable HIV-positive transplant candidate. There are just too few livers available and too many people who need them. One option would be to commute to Miami, Florida, at our expense every two months to be simultaneously in their waiting list, but that's a long shot and prohibitively expensive, so we're not pursuing that option for now.

We kept being asked over and over again if there wasn't someone ELSE who could donate. Vinny and I thought that this was a pretty stupid question -- as if we had a whole list of people and just forgot to tell them or were keeping it a secret for some reason . Frankly, we don't think this is pretty likely as donating part of your liver is a huge commitment, and not without significant risk and a substantial time commitment. If any of you can think of anyone, we'd CERTAINLY be happy to talk with them and give them background information.

A donor must between 18 and 55 years old, preferably of the same size or bigger than Vinny (he's 5' 10" and 175 lbs), blood type "B" or "O" (blood type Rh factor of positive or negative is NOT important). They must be in overall good health and not overweight, *NOT* either HIV-positive or hepatitis-positive.

In the meantime, we're re-doubling our efforts to improve and maintain Vinny's health through more aggressive nutrition and supplements, as well as plenty of rest, moderate exercise, simple yoga, meditation, love, hugs, and prayer, with the hopes that we'll have better options in the future.

We'll keep you all posted as news develops.

-- Mark & Vinny

Tuesday, September 11, 2001

It's 3:30 PM here in lower Manhattan -- almost seven hours since the first attack.

Telephones, mobile phones, and the Internet all jammed with folks trying to get information, and we know many of you have been trying to get through.

Vinny and I wanted to assure all our friends and e-mail readers that Vinny and I are both OK, although understandably somewhat shell-shocked and numb, as our charming, safe Greenwich Village home is in clear view of what was the World Trade Center Towers. All roads, bridges, trains, etc. are all closed. So are all the stores. It's like a scene from a action film. But we're many blocks away from "ground zero" -- Vinny and I are at home, safe -- and it's his birthday, so we were planning to spend the day together anyway. Of all days, what a day to plan to hide from the world!

The city has been silent all day save for the sound of ambulances -- no traffic and people just walking in the streets dazed and speechless. From what we hear on CNN, certainly many thousands are dead and many, many, more thousands are injured -- the huge Javitis Convention Center has been converted into an over-flow hospital. I wonder if more people died today from this horrible act in New York City than have died here from AIDS -- perhaps. Anyway, there isn't anything to say, except that it feels like the world will never be the same again. It does put the difficult times that Vinny and I have been going through in perspective.

Thank you for all your love and good wishes. Keep safe!

Love,
Mark & Vinny

Sunday, August 26, 2001

Sorry that it's been such a long time since the last Vinny update e-mail, and quite a lot has been going on...

As much as we'd like to postpone Vinny's need for liver transplant surgery and it's significant risks, if we wait long enough, either his HIV disease will stop being so well behaved or the liver cancer will spread or any of a list of other factors could come up that could postpone or prevent the transplant. And naturally, given Vinny's various conditions, any number of factors could develop pretty rapidly that could be life-threatening.

In late June we *DID* have a little bit of a hiccup where it looked for a while that Vinny's anti-HIV "cocktail" was wearing out -- which is pretty common after a year or two of one drug combination -- but was more serious in Vinny's case because he's already gone through most of the currently available drugs that he can take with his liver and bipolar conditions, and more importantly, if his HIV "viral load" creeps up, then he would be disqualified from the experimental liver-transplant-for-HIV-positive-people program for up to six months, which in our case can be an eternity.

Fortunately, our wonderful HIV team was able to get Vinny approved on a compassionate-use basis for a new, experimental drug, Tenofovir. It's impossible to know if it was this new drug, "strengthening" the previous regiment, or if the hiccup was only an artifact of a couple of bad tests, but now everything is back on track.

With this sense of urgency, we've been pushing through all the bureaucratic and medical hoops to get Vinny fast-tracked toward his transplant and we tried to get Vinny's donor, Gregory, through all the tests, requirements, and approvals while Vinny was physically the strongest.

A few weeks ago, it looked as though Gregory would finally be approved on all the various levels, and that we would be able to schedule an October transplant date...

Unfortunately, just last week we learned that Gregory would almost certainly *NOT* be able to be Vinny's donor after all. As you might expect, this was pretty devastating news, and we were frantic, confused, angry, sad, and we're just now trying to re-group and work out an alternative plan.

Of course, the best option would be to get a replacement donor. But donating part of your liver is a huge commitment, and not without significant risk and a substantial time commitment. Frankly, getting someone isn't very likely, but we'd CERTAINLY be happy to talk with anyone who might want more information on this.

A donor must be between 18 and 55 years old, preferably of the same size or bigger than Vinny (he's 5' 10" and 175 lbs), blood type "B" or "O" (blood type Rh factor of positive or negative is NOT important). They must be in overall good health and not overweight, *NOT* either HIV-positive or hepatitis-positive.

The more realistic option is to re-double our efforts to improve and maintain Vinny's health through more aggressive nutrition and supplements, as well as plenty of rest, moderate exercise, simple yoga, meditation, love, and prayer, with the hopes of keeping him well enough to wait out getting to the top of the UNOS transplant list to get a cadaver-donated liver. This will be our number one goal, for now.

Naturally, we'll keep you all posted -- in a much more timely manner -- as news develops.

-- Mark & Vinny

Friday, April 06, 2001

After spending the last month oscillating between tedium and terror with a mind-numbing array of doctors and tests and paperwork -- and facing another month with even more -- we thought we'd take a little detour and talk about one of the highlights of our social year...

Last weekend we attended the annual "Night of a Thousand Gowns" charity ball at the New York Marriott Marquis Grand Ball Room.

With about one thousand attendees, it's one of the world's largest drag queen spectaculars, with elaborate costumes, jewelry and pageantry that rivals a European coronation or royal wedding along with the spectacle of Oscar night -- or perhaps Mardi Gras or a Las Vegas beauty pageant. Each year, a new Emperor and Empress of New York are elected by popular vote of the members of the New York Imperial Court organization. This night is a tribute to the out-going pair and the coronation of the new ones.

Although SOME of the "ladies" were in high couture size six, many of the costumes are multi-thousand dollar, custom made creations in larger sizes (and MUCH larger hair!) designed expressly for this one night. Think classic Hollywood meets Queen Victoria with a little Queen Elizabeth I thrown in. There are also a fair number of "Drag Kings" (women who dress as men, complete with mock facial hair and jock bulges!), as well as a host of revelers in faux military dress uniforms or leather outfits.

Naturally, words cannot adequately describe all this, which is why we've posted some of the best photos from the night on our website...

"Night of 1000 Gowns" 2001 http://www.printroom.com/ViewAlbum.asp?userid=metamorphics&album_id=136340

(you may click on these smaller preview images for a full-screen version, although they take longer to download)

Once again this year, we had the honor of sitting at one of the head tables with our dear friend (and former employee) Empress Coco La Chine. We also got to spend time with the spectacular Jose Sarria, (also known as "The Widow Norton, Jose I, the first empress"), the 77 year old dowager matriarch and founder of the International Court System -- the world's oldest and largest gay organization.

The evening runs from 6:30 PM for cocktails and a silent auction, then dinner, the tribute, the processional, the coronation, and finally a dessert buffet until well after 1 AM. Amazingly, the time flies by, and some of the more glamorous participants have a number of costume changes throughout the evening.

Vinny wore a modern interpretation of a tuxedo in a textured cotton designed by Eiko Blow for Japanalia accessorized with a shocking pink Tibetan prayer shawl and matching shocking pink socks and gloves along with black Japanese slippers. Vinny's makeup was done by Bruce of MAC Cosmetics. Mark wore a more traditional tuxedo with gray 4You bow tie accessorized with cowboy boots (oh my!) and gold and emerald jewelry designed by his mother. Our dear friend Wayne transformed into "Molly Rimswell," one of the loveliest young ladies at the ball, waring a custom made emerald green gown with bejeweled black high healed pumps and a white lamb's fur short jacket. Wayne did HER own hair complemented with makeup also by Bruce of MAC Cosmetics.

-- Mark & Vinny

Monday, February 26, 2001

Since so many of you are newly being included in Vinny's medical update, I thought I'd catch everyone up with some medical background information.

As part of a routine medical exam back in 1983, Vinny was diagnosed as having previously had Hepatitis-B sometime in the past, and that his system had still not been unable to "clear" the virus, so he therefore had CHRONIC Hepatitis-B. In 1989, also as part of routine medical work, Vinny was further diagnosed as being HIV-positive as well.

Learning that he was HIV-positive lead Vinny to re-doubling his efforts for a healthy lifestyle: eating a largely vegetarian, whole-foods diet, meditation, and yoga. He also felt strongly that invasive "western medicine" largely did more harm than good for those living with HIV -- frankly, at that time, he was probably right. He started an HIV-positive support group in the New Haven area, and was a frequent student at the Kripalu Yoga center in Massachusetts. Vinny and I first met as randomly assigned "prayer partners" at a Marianne Williamson HIV-positive workshop in 1993.

On January 2, 1995, while we were vacationing in Miami's South Beach, my mother died, and when we flew back to New York, we learned that Vinny's really rotten case of flu was actually PCP Pneumonia -- at the time, the leading cause of death for people with HIV/AIDS. Although Vinny was dramatically allergic to the treatment for PCP, he was able to be desensitized to this allergy by an experimental technique (at that time) of slowly increasing dosage daily over a number of weeks.

Once he had fully recovered from PCP, he began taking AZT and other anti-HIV medications. The AZT re-activated Vinny's bi-polar condition (manic depression) that had been in remission without any drug therapy for over half a decade. The next six months were a difficult time as we adjusted and re-adjusted HIV/AIDS and bi-polar medications.

By the Fall of 1995, Vinny had once again stabilized and was in good health for a number of years.

All those medications that we're keeping Vinny healthy and alive, DID eventually take there toll. Vinny developed "wasting syndrome" where the body can't absorb enough food to maintain his weight, and at the same time he developed "lipodistrophy", a condition caused by some anti-HIV/AIDS medications where the body moves what fat it does have from the rest of the body into the belly. The combination was particularly unfair, as he was losing weight, looking gaunt, and gaining a big belly.

Vinny went on to develop a mysterious condition where he had intense pain in his GI tract on a daily basis. Although countless test were run, it wasn't until years later that the cause was finally diagnosed...

In the Summer of 1999, he developed anemia, and his blood counts were way down. After various tests, it was determined that Vinny had internal bleeding. His chronic Hepatitis-B has caused cirrhosis of the liver. Since the liver acts as the body's main filter to remove impurities from the blood, when the liver is somewhat clogged by scar tissue (cirrhosis), this can cause pressure to build up in the plumbing between the heart and liver, thus causing ballooning (varicose veins) and leaks (internal bleeding) in the hoses (veins). This is exactly what happened to Vinny.

For the next year, Vinny went into the hospital on a monthly basis, for the surgeon to perform painful endoscopic procedures to "band" or "cauterize" these potential leaks and repair actual ones.

We're told that Vinny holds the Roosevelt St. Luke's Hospital record for the most number (by far) of successful endoscopic procedures!

By late May 2000, the condition had deteriorated to the point where drastic action was required to avoid life threatening internal bleeding.

On June13, a TIPS Shunt (Trans-jugular Intra-hepatic Porto-systemic Shunt) was installed in a very high-tech, three-hour procedure, where a catheter is put through the neck and what's basically a partial liver bypass implanted by remote control to relieve the backed up pressure. Vinny's internal pressure number went from 15 (dangerously high) to 6 (normal, even on the LOW side) which GREATLY reduced the likelihood of more internal bleeding.

Unfortunately, with that much blood bypassing being filtered by the liver, various toxins built up to the point where Vinny developed a condition called "Portal-systemic encephalopathy" where he had extreme fatigue, disorientation, hand-eye coordination loss, memory loss, etc. It was sort of like instant Alzheimer's. Luckily, it was also easily reversible with a combination of drugs -- although getting the right balance took a few weeks.

We've just started consulting with the liver transplant specialists to evaluate his options in that direction. One possibility is a "partial liver transplant" which is a more available option. Hopefully, a transplant is not an option that we'll have to take advantage of in the near future, but it's better to have done our homework, just in case.

On a personal note, Vinny and I would like to thank you all for your love, support, thoughts, prayers, e-mail, phone calls, notes, and for the overwhelming support that has lead to our setting up this e-mail newsletter. It really means so much to us. Please keep in touch.

-- Mark & Vinny

Wednesday, February 21, 2001

Now that Vinny has been listed as a candidate to receive a liver transplant, it turns out that VINNY MAY WELL BE THE VERY FIRST PERSON WITH AIDS TO EVER RECEIVE SUCH A TRANSPLANT.

As mentioned in our POZ story, so far NINE OTHER PEOPLE who have HIV have already received liver transplants so far, but NONE OF THEM have had full AIDS.

We got a call today from NY1 News, the local 24-hour News station owned by AOL Time Warner, the parent company of CNN, and they want to do a feature story on Vinny's journey. They will be spending the day with us next Tuesday at our home and at Mount Sinai. We'll let you all know air dates when we get them.

When it comes time for the actual transplant, they want to film that process as well (but not the actual surgery, of course) and they expect that this follow up will be aired internationally.

We'll keep you all posted...

-- Mark & Vinny

Thursday, February 15, 2001

VINNY HAS JUST NOW BEEN LISTED AS A CANDIDATE TO RECEIVE A LIVER TRANSPLANT!

Well at 6:24 PM we got the call from Mount Sinai that Vinny HAS JUST NOW BEEN "UNOS-LISTED" as an approved candidate to receive a liver transplant -- which is great news, and at least THIS part of the long waiting process is now over.

Vinny's condition is quite good and stable for now -- thanks to lots of work by Vinny and his medical team AND MORE IMPORTANTLY lots of love and prayers from all of you -- THANKS!

The team at Mount Sinai doesn't feel it's necessary to rush TOO QUICKLY into the next step quite yet.

We are now pursuing simultaneously three avenues:

1. a regular cadaver-donor liver,
2. a living donor liver -- presumably Gregory
3. A BRAND NEW OPTION: a cadaver-donor liver from someone who TESTED HIV-negative, but is nonetheless, a "high-risk" candidate for HIV, and therefore whose organ would be too risky for general transplant.

Technically, we *ARE* now waiting for THE PHONE CALL to come in at any moment that a donor liver has become available, but frankly, there are MANY folks in greater need ahead of us. As we get closer to the top of the list, we'll be put on higher alert status.

We also have to get the folks at our insurance company, PHS, to approve paying the million-plus dollars for the whole transplant procedure. So far, that's something they've never had to deal with for a person with HIV/AIDS. But we think that this is looking good in our case.

The key question now driving the whole timing issue is wether Vinny does -- or does NOT -- have liver cancer. And if he DOES have liver cancer, just how aggressive this cancer might be.

The two most recent CT Scans seem to indicate that he DOES have two 1/2" tumors that ARE liver cancer, but that so far they haven't grown. The blood tests seem to indicate that these might NOT be cancer (just part of his cirrhosis), but that's not as reliable a test. Our medical team seems pretty evenly divided on this whole issue.

Today, our advocate at Mount Sinai (Sam Sigal, the attending transplant hematologist) felt that it was more than 90% likely that he DOES HAVE LIVER CANCER, but that we didn't need to take any action unless these tumors started to grow. So we'll just follow up with CT Scans every two months.

Originally, we had thought as soon as Vinny got approved, then Gregory would begin HIS evaluation process, but since we're in somewhat of a holding pattern, they don't feel that this is needed yet, and once it is needed, it can be done pretty quickly.

So, we're one step closer, but hopefully in a VERY LONG holding pattern.

The February/March POZ Magazine with our story should now be on the newsstands, although I hear it somewhat hard to find. We should be sending out the on-line version shortly.

Many of you have asked again about organ donation and transplants.

To find out more, Call the Coalition on Donation/Share Your Life Campaign at 800.355.SHARE or visit http://www.shareyourlife.org

For more information on transplants, visit www.unos.org and http://www.liverfoundation.org

As always, thank you all for your love and support.

-- Mark & Vinny

Thursday, February 01, 2001

"Liver Lovers"
POZ Magazine, February 2001
by Mark de Solla Price

When your liver goes South, an organ transplant may be your final destination. Mark de Solla Price takes us along on his partner Vinny's journey to get one.

November 13, 2000
Today my husband, Vinny Allegrini, and I are in a strange no-man's land, camped on the 14th floor of a bland office building on Mount Sinai Hospital's sprawling 10-block campus between Harlem and the monied enclave of New York City's Upper East Side. We're here for the second of three full days at Mount Sinai's Recanati/Miller Transplantation Institute.

This is the nation's third-largest liver transplant center, where more than 175 transplants have been performed in the past year. More important for us, it is one of the few hospitals in the world that will consider someone who is HIV positive as an organ transplant candidate. Of 120 transplant centers in the U.S., only the University of California at San Francisco, the University of Pittsburgh Medical Center and Mount Sinai have ever done organ transplants for HIVers, although hopefully a dozen other centers may perform them soon.

Vinny and I landed here because after more than a decade of chronic hepatitis B coupled with the toxic effects of HIV drugs, Vinny's liver is failing. We don't know how much longer he has with all the stopgap measures we've been taking, but we do know that the only treatment option for end-stage liver disease is a transplant. Once we accepted that last summer -- which wasn't easy -- we began to do whatever it takes to make one possible.

I've had HIV for 20 years, and Vinny has been living with both HIV and hep B for 12. In the eight years we've been together, we've become quite a health-care duo, each the other's caregiver. Our doctors joke that we double-team them: Regardless of who has the appointment, we both show up. When our insurance company, Physicians Health Services (PHS), stopped covering office visits for our testosterone injections, Vinny and I learned how to give each other the intramuscular shot with those intimidating two-inch needles. We've figured out together how to do research and work the benefits system. But even with all these skills, the journey toward a transplant is sure to be long and difficult, with no certain success.

Transplants are insanely expensive, even compared with the enormous expense of HIV care: Kidney transplants can cost up to $250,000; liver transplants, up to $1 million. Post-transplant meds can cost $20,000 a year for life.

Beyond the dollars involved, donated organs are incredibly scarce and the waiting list grows steadily. In 1999, 4,698 liver and 12,483 kidney transplants were performed, while more than 4,500 people died waiting for an organ to become available.

Because of the huge expense and the scarcity of organs, the evaluation process is extremely complicated. The goals are to prioritize those most in need and to reject those unlikely to recover from surgery. In the past few days at Mount Sinai, we've undergone a mind-numbing array of tests, interviews and exams. By the end of the process, Vinny will have completed a medical assessment by the liver transplant team (four doctors and 13 vials of blood!), two cardiology tests, a chest X-ray, TB screening, abdominal CT scan and ultrasound, evaluation of his HIV and hep B infections, a dental exam and sessions with a psychiatrist and a social worker.

A few years ago, simply having HIV was enough to knock you off the list. Perhaps biased by AIDS ignorance, experts feared both that the strong meds used to prevent organ rejection would destroy PWAs' already-suppressed immune systems and that HIVers wouldn't live the five-plus years postsurgery to justify the use of donated organs. But due to the advent of HAART, along with activist pressure from Jeff Getty of Survive AIDS (formerly ACT UP/Golden Gate) and others, liver and kidney transplants have become available to a very few HIVers over the past two years.

"Historically, HIV precluded any possibility of liver transplants," says Sam Sigal, MD, the attending transplant hepatologist at Mount Sinai. "The combination of HIV and immune suppression would have been devastating. However, with new, effective HIV treatments, the issue has been reconsidered. Now transplants are being performed in selective cases." So far, just 13 HIVers have received a liver, and five a kidney. All but two are still living. And it looks like serious infections in positive transplant recipients are no more frequent than in others. In December 1998, Alan Hext, of Palm Springs, became the first HIVer to receive a liver transplant; though he was hospitalized once for an oral infection (probably related to the immune-suppressive antirejection drugs), overall, he's quite healthy, with high CD4s, an undetectable viral load, a thriving liver -- and a new baby son.

This anecdotal data is encouraging, but Vinny and I know we're in fairly uncharted territory. The other day, Vinny told me, "It's scary to hear that only one operation like mine has ever been performed at Mount Sinai, and that our insurer has never approved coverage for an organ transplant for someone with HIV. But being told that your liver is beginning to fail puts a lot of things in perspective." We just keep crossing one bridge at a time.

June 16, 1999
Today is the anniversary of the day Vinny and I first met as "prayer partners" at an HIV workshop led by spiritual guru Marianne Williamson. Though we both believed then that we were beyond romance, a life-challenging condition can make events progress at warp-speed. I was living in New York City working on a book, and Vinny was cutting hair in West Hartford, Connecticut, but that summer we began to live together. We'd alternate between staying with Vinny's ex-lover, Gregory Dean, in West Hartford, and my ex in New York City. Our exes form a kind of family for us; Gregory, in particular, would soon become essential to Vinny's future.

In recent weeks, Vinny has developed anemia and a mysterious, intense pain in his GI tract. So instead of celebrating our six years together, we headed off to our GI and liver specialist, George Haroutiounian, MD. There, Vinny had to undergo an endoscopy, in which they shove an 18-inch robot arm down your throat, while I got to watch live on a video monitor. I knew Vinny's throat was supposed to look pink and smooth, but instead I saw swollen, lumpy veins. Vinny had internal bleeding from leaking varicose veins in his esophagus.

It turns out that Vinny's chronic hepatitis B, along with the antiretrovirals he's been on since 1995, has caused cirrhosis of the liver. Because the liver filters impurities from the blood, when scar tissue (cirrhosis) clogs the liver, pressure can build up in the plumbing between the heart and liver, causing the veins to balloon and leak. Difficult to diagnose and treat in time, this internal bleeding is often fatal, so it's critical to watch for. It's also pretty common: Many HIVers are coinfected with hepatitis, and each year about 10 percent of people with hep B and 85 percent of those with hep C end up with chronic hepatitis -- the leading reason for liver failure in the U.S.

For the next year, Vinny will follow a very aggressive treatment, entering the hospital on a monthly basis for endoscopic surgeries to "band," or cauterize, the leaks. These procedures are extremely painful because when you have liver damage, only tiny amounts of anesthesia can be used. Luckily, our surgeon, Leslie Seecoomar, MD, is, in Vinny's words, "truly gorgeous -- though hetero -- a Ken doll with blue-black hair." This helps Vinny distract himself during the surgery. One doc told us that Vinny holds the Roosevelt-St. Luke's Hospital record for the most successful endoscopic surgeries.

January 12, 2000
Vinny had just left on Amtrak to visit his family in Hartford and I was about to head out the door to the gym when I got a call from our regular HIV doc, Howard Grossman, MD, with the results of Vinny's latest blood tests. His hematocrit (the percentage of blood made up of actual blood cells) was dangerously low. A normal reading is 40 to 50 percent; Vinny's was under 20. Apparently he'd had another serious bout of internal bleeding.

It seemed to take forever for Vinny to arrive in Hartford and call in. I told him to get on the next train back. While I was waiting at the station, Haroutiounian's office paged me: "Don't come to the office. Go straight to the emergency ward for a transfusion."

Vinny tends to have a great attitude, and I'm the sort who stays calm in an emergency, but the next 24 hours were tough for both of us. This was the height of the flu season, and the hospital was packed, complete with TV crews covering the pandemonium. Luckily the transfusion stabilized Vinny, who was once again endoscopically patched up. By the time we got home, we'd both been up for 48 hours. We collapsed on the bed and didn't leave the house for two days.

May 31, 2000
Life barely seems to get back to normal anymore. While we were in Copenhagen to celebrate my 40th birthday, Vinny had yet another bout of internal bleeding. We rushed back to New York to find that his condition had so deteriorated -- Seecoomar said his throat looked as if no repairs had been done at all! -- that drastic action was required. Vinny got a TIPS (transjugular intrahepatic portosystemic shunt) installed in a three-hour, high-tech procedure -- a catheter was inserted through his neck and the shunt implanted by remote control. The shunt will serve as a partial liver bypass to relieve the pressure. Vinny's internal pressure number went from 15 (dangerously high) to 6 (the low end of normal) after the surgery, which greatly reduces the likelihood of more internal bleeding, at least for now.

As with most HIV remedies, the downside soon emerged: With all that blood bypassing liver filtration, so many toxins built up that Vinny developed "portal-systemic encephalopathy," a condition that causes extreme fatigue, mental confusion and motor skill problems. The classic test is to ask the patient to put his or her arms out, palms forward, like a traffic cop signaling to stop. People with encephalopathy will involuntarily flap their hands, which, scarily, is exactly what Vinny did. It was as if he had instant Alzheimer's. Although serious, the condition is generally reversible with drugs. In Vinny's case, we used lactulose (Kristalose) and neomycin, and once again he rebounded.

August 21, 2000
Today, as we headed for our monthly checkup with Grossman, we were feeling pretty happy about Vinny's condition. He's had to rest a lot, because the liver damage taxes his system, but on good days he works to build his stamina with moderate exercise. We had the sense that his health could remain stable for quite some time. Unfortunately, Grossman didn't share this view. Although Vinny could be stable for a few years, Grossman said, his condition also might destabilize quickly to the point where his only option would be a transplant. Grossman strongly suggested that we waste no time beginning that lengthy process. If we waited until Vinny was desperate for a transplant, it might be too late to get one.

Both Vinny and I left feeling shaken up. But within days, we set up our first meeting with Sigal, the transplant expert at Mount Sinai. The current guidelines, he told us, limit access to those who have never had an opportunistic infection or a CD4 count below 200, have zero viral load for both HIV and hepatitis, and are otherwise healthy. Technically, Vinny doesn't qualify, but his PCP and low CD4s happened years ago, prior to his taking HAART, so we're hopeful that he's close enough for the folks at Mount Sinai. Once Vinny's intensive evaluation is complete, the Recipient Review Committee will make a final decision.

August 24, 2000
This process has been Kafkaesque. Before you even start the headache of an evaluation, you must be preapproved by your insurer. Our HMO-style PHS naturally wanted this costly process taken care of "in the network" of contracted facilities. However, none of the three hospitals that do transplants for HIVers are in the PHS network. So Mount Sinai refused Vinny's insurance and referred him to New York University Hospital; NYU, which doesn't do transplants on HIVers, sent us back to Mount Sinai, which sent us back to NYU. This Catch-22 would have been funny if Vinny's life weren't hanging in the balance, but we were freaked.

Finally, today, a PHS supervisor was able to break this infinite loop and authorize us "out of network," at least for the evaluation. In fact, PHS is now covering the evaluation stage for several HIVers, but since no one has yet progressed to surgery, the jury is still out on whether PHS will cover the transplant itself. And our epic insurance battle is hardly unusual for people with HIV who need a transplant.

The next obstacle was a legal one: Vinny's HIV meds cause extreme nausea and vomiting. But because all of the approved antinausea meds are metabolized in the liver, if Vinny were to take them, he'd end up in the hospital with encephalopathy again. One of Vinny's regular doctors suggested that he try medical marijuana, which Vinny used with great success. However, Mount Sinai classifies use of medical marijuana as "illegal drug use" -- if Vinny continued to use it, he'd be rejected as an "active drug addict." So a few months ago Vinny stopped using marijuana and signed a contract allowing random drug testing.

Now he has to get used to constant nausea and throwing up onto the curb as we walk along the street. This isn't exactly fun, but we had no choice. This isn't a rule we've been able to bend -- yet.

September 1, 2000
If Vinny is accepted into the transplant program, he'll be added to the UNOS (United Network for Organ Sharing) list -- a centralized database to match up the scarce organs with those in need. Matches are based on medical urgency, time spent on the list, compatibility of donor organ (for livers, it's blood type and size; for kidneys, tissue type matters, too), and location. Potential recipients move up the list over time and as their condition worsens. That's when the final Catch-22 kicks in: It's common for people to wait years before they make it to the top of the list -- so by the time they get to undergo this major operation they're usually critically ill. Not ideal.

Here's the silver lining: We recently found out that once Vinny is accepted into the program, he may have a better option: a "living donor" transplant. In this procedure, first performed in 1989, a healthy person donates about 60 percent of his or her liver, which, unbelievably, fully regenerates in both the donor and recipient in six to eight weeks. (A kidney donor gives up one kidney, and survives fine with the other.) The quality of an organ from a living person is generally better than one from a cadaver: It can be carefully prescreened and then transplanted quickly, rather than spending a day or two on ice in transit. But this procedure is technically far more difficult than transplanting a whole liver because the blood vessels and bile ducts have to be carefully divided between the donor and the recipient.

Nearly a third of all kidneys transplanted come from living donors, but fewer than 1 percent of livers do. The first such operation in New York state was performed only two years ago. The procedure's been done just once at Mount Sinai on an HIVer (according to the senior clinical coordinator there, that person is still doing well after a year). The biggest advantage of a living donor is that we won't have to wait for the transplant until Vinny gets critically ill. Of course, we need to find a donor with the same blood type as Vinny, the same physical size, in great health and -- this rules me out -- HIV and hepatitis negative. So far no living donor at Mount Sinai has had a serious complication, but as with any major surgery, there is some risk.

Something incredible happened this evening when Vinny was driving to a restaurant with Gregory, his ex. Suddenly, Gregory, who has the same blood type as Vinny, turned to him and asked if he might be able to donate part of his liver. Vinny says that he was completely speechless for a long moment, and then they both broke down crying, hugging and crying. When Vinny called me with the news just now, I started crying, too. "Vinny's been my best friend for more than 17 years, even though we went our separate ways romantically," Gregory would later tell me. "He's pretty remarkable, and it's been rough to see all that he's had to go through medically. He's my true family -- when I heard that I might be able to qualify as a donor I just knew I wanted to do it." Vinny and I are blown away by Gregory's act of love -- and extremely grateful.

Once Vinny is approved as a transplant recipient (think positive!), Gregory will face his own array of testing to determine whether he's in fact a suitable donor -- a process that may take several months. "If everything works out," Gregory will point out, "we'll all be living together for a while as Vinny and I recuperate from successful surgery." It'll be just like the old days, when we all shared Gregory's apartment in Connecticut.

October 3, 2000
For now, we're focused on getting Vinny "on the list." Our attitude is to make a liver transplant viable but put off needing one for as long as possible, with steps like his shunt, the endoscopic surgeries and therapies for liver disease symptoms -- the topic of today's visit with Haroutiounian.

While many people in the early stages of hepatitis find that treatments with interferon fend off liver damage, Haroutiounian said that Vinny's cirrhosis had progressed too far for the drug to be of use. Instead he put Vinny on the hep B drug Epivir HBV, a.k.a. 3TC -- the same drug used to fight HIV but in a much lower, 100 milligram per day dose. (Note: HIVers who have never taken 3TC may want to take a pass, because the low dose may promote drug resistance.) On this med, Vinny has consistently tested negative for HBV DNA -- a viral load measure for hepatitis.

We've also been swamped with helpful suggestions for liver-supportive foods and herbs; several experts recommended nutrients that raise liver levels of glutathione (N-acetyl cystine, vitamins C and E, alpha-lipoic acid and glutamine) as well as the antioxidants silymarin (milk thistle extract) and coenzyme Q-10. Some liver experts recommend avoiding animal protein (with its high ammonia content) to reduce encephalopathy, but with Vinny's wasting and nausea, he wasn't able to tolerate this diet. So far the only thing that's clearly helped Vinny's liver labs is the milk thistle, at 400 mg per day. When he takes it, his liver scores improve; when he stops, they get worse. Hardly a clinical study, but good enough for us.

Just like living with HIV, liver disease is a game of playing for time. "We'll just play the cards as they are dealt and keep moving forward," Vinny says. "There is a remarkable amount of power in just doing it and letting the details take care of themselves."

December 1, 2000
Vinny and I spent the evening at an AIDS benefit at Carnegie Hall, and tonight we're full of hope. This is the strange, wonderful future we're visualizing for Vinny: six to eight hours of transplant surgery, followed by two to three weeks in the hospital and a footlong scar above his belly-button; and then a barrage of drugs to prevent infection and organ rejection. After recovery, doctors say Vinny's low stamina should abate; three to twelve months after surgery, he should be able to work again and lead an active life.

In the earliest days of organ transplants, rejection was sometimes fatal, but with improved antirejection drugs -- cyclosporine (Neoral), tacrolimus (Prograf), prednisone and azathioprine (Imuran) -- this has become extremely rare. Today the big dangers are hepatitis recurrence and complications brought on by the immune-suppressive antirejection meds themselves, especially bone and cardiovascular disease and opportunistic infections -- a special concern for HIVers. Common infection-fighters include Bactrim to prevent PCP, acyclovir to prevent viral infections, clotrimazole (Mycelex) to prevent oral thrush, and nystatin, an antifungal, to prevent vaginal infection. Doctors also recommend aspirin to decrease blood clots in the new arteries and veins. (A warning: Laurie Carlson, UCSF's transplant study coordinator, informed me that many transplant meds interact with HIV meds and affect absorption of both classes of drugs, so dosing must be regulated very carefully. In fact, Dr. John Fung, Chief of Transplant Surgery at the University of Pittsburgh, attributes one of their two HIV positive liver transplantee deaths to the lack of knowledge about the interactions between these drugs by the patient's own non-transplant doctors.)

We might expect Vinny to have at least one episode of organ rejection in the first three months; this requires hospitalization but is usually treatable. Since Vinny has hep B, he'll also have to get lifelong monthly infusions of hep B immune globulin (HBIg) to reduce the likelihood of hepatitis recurrence.

Kidney and liver transplants are enormously expensive and complex procedures. But they have a good track record (they've been performed since 1954 and 1967, respectively) and survival rates are high: about 80 percent for liver recipients and 95 percent for kidney recipients. Some live up to 30 years after surgery. While it's too early to predict long-term success rates for people with HIV, our message to those with serious liver or kidney disease is: It is possible. As for us, we hope to lead a long and happy post-transplant life together.

December 8, 2000
Just as this article is going to press, we get a call from Sigal at Mount Sinai with some disturbing news: Vinny's latest liver CT scan shows two small tumors. Given that Vinny has cirrhosis and hep B, there's no question that these are liver cancer. Such small tumors are common in people with extensive liver damage, and tend to be well behaved, but Vinny will have to repeat the CT scan every two months to monitor the situation. If the tumors start to grow, he may have to begin anticancer treatment on top of everything else; more than ever, a transplant is our only hope. Optimists as always, Vinny and I are focusing on the positive: These tumors are a UNOS "listing criteria," so they may greatly expedite Vinny's acceptance into the transplant program.

A Liver Runs Through It

Gregory Dean on three-way love, gay friendships and the gift of life.

I'm orIginally from South Carolina, and ever since I came North, Vinny's been the mainstay in my life. We met back in July 1983, and were partners for six years; by now he's seen me through four relationships. Vinny always makes sure I have a place to go for the holidays. He looks out for me. Whenever I have problems, and no one else in the world to talk to, he's there. Once, when I was on the verge of a breakup, my partner punched me in the face. The first thing I did was call Vinny, crying hysterically. And he knew what to do; he even called the cops and made them come to the house.

When I heard that a living liver donor was a possibility, I immediately thought, "I can't imagine this world without Vinny." I didn't talk to anyone else, because they'd all say, "No, don't do that." Making the offer just felt natural.

I'm not afraid of what's ahead. I've always been fairly healthy, and from what I've read, your liver regenerates itself. A couple of friends think my decision is absolutely wonderful, but one thinks I'm crazy, that it's too risky. Am I going to tell my family? No. They have a tendency to freak out.

I believe that we're all part of a universal community. You know that thing about karma, how what goes around comes around? You help someone today, someone else may help you tomorrow. I've seen too many people go in ugly ways -- including a boyfriend who died of AIDS in 1994, who went down very, very quickly -- and it just isn't fair. It could be any of us. I hope, after all the tests, it works out for me to do this. Because Vinny is an amazing person.

Resources

To Give
If more people signed up to be organ donors, livers and kidneys wouldn't be so scarce. For HIV and hepatitis neggies, here's how to do the right thing:

Call the Coalition on Donation/Share Your Life Campaign
at 800.355.SHARE to get info and your donor card, or check out www.shareyourlife.org.

To Receive
If you or someone you love is coping with organ damage and may need a transplant in the future, start planning now:

United Network for Organ Sharing
the definitive resource on transplants, at www.unos.org or 888.TXINFO1

American Liver Foundation
for info on liver disease, at www.liverfoundation.org or 800.GOLIVER

National Kidney Foundation
for info on kidney disease, at www.kidney.org or 800.622. 9010

HIVandHepatitis.com
an info-packed site all about HIV and hepatitis co-infection, at www.hivandhepatitis.com

Survive AIDS
a San Francisco-based activist group that has taken the lead on advocating for transplants for HIVers, at 415.252.9200 or www.surviveaids.org

Centers that perform HIVer organ transplants:
University of California at San Francisco (UCSF) at 415.502. 8322 or www.ucsf.edu; University of Pittsburgh at 412. 648.3200 or www.sti.upmc.edu; Mount Sinai Medical Center at 212.241.8035 or www.mountsinai.org

To share
For personal updates from me and Vinny Allegrini on our saga, send an e-mail to: vinny-subscribe@igc.topica.com. [please now visit the Subscribe tab on this website]

-- Mark de Solla Price

Updated Updated 03/24/2003, but please check the sources links:

http://www.metamorphics.com/vinny/POZ.htm

http://www.poz.com/archive/febmar2001/inside/liverlovers.html

Thursday, January 18, 2001

Last week, Vinny's oral surgery was rather more extensive than we had expected -- eight teeth extracted rather than just the two we had expected -- but it went off without a hitch and had fewer complications than we had feared. Vinny now has an upper denture and is looking more hansom than ever And although that whole process was unpleasant, the previous masterful dental illusion was no longer maintainable. In the long run it will prevent the on-going minor oral infections that might otherwise become a serious problem with the anti-rejection drugs required for the liver transplant.

Today, Vinny had a follow-up appointment with the transplant team as well as a first meeting with the actual transplant surgeon. Mostly it was pretty routine stuff and review of information we already knew -- but the surgeon *WAS* quite encouraging that Vinny was in quite GOOD health, and that we may well be able to put off the transplant for quite some time -- *IF* the CT Scans continue to show that the liver tumors remain under control.

As we've said before, the results of the CT Scan are particularly important, for as long as the liver tumors are at least stable, it buys more time for everything else. If they SHRINK, that's even better. If they get bigger, then the time table moves up. The latest blood tests indicate that these tumors probably are NOT growing -- and there's even a possibility that the tumors are NOT actually liver cancer but non-regenerative cirrhosis nodules -- although that's not common given Vinny's chronic hepatitis B and cirrhosis -- but we can hope they are.

Tomorrow (Friday, 1/19) at 5 PM, Vinny goes in for the follow-up CT Scan -- so we know for sure -- and again Vinny and I, and we'd like to particularly ask for your prayers and good wishes, now more than ever.

On Monday we both go to Mount Sinai for the transplant psychiatric evaluation -- which is the last item before our case is presented before the recipient review committee to approve Vinny to be able to receive a liver transplant. We should hear the results on GROUND HOG DAY (February 2), at which time we'll either be approved, declined, or most likely referred back to our HIV specialist for some fine-tuning in Vinny's HIV/AIDS medications/management before they will approve him. [We're also told that the new issue of POZ with our story should be in people's mail boxes that same week!]

Once approved, then Gregory can begin *HIS* evaluation to qualify to donate part of his liver, and we have to get our insurance company (PHS) to agree that this is appropriate and necessary treatment and agree to pay the million or more dollars to Mount Sinai for it.

We still have no idea WHEN the transplant might be -- again, we want to QUALIFY as soon as possible, but postpone the need for the procedure for as long as we can.

We'll keep you all posted when we know more. Thanks as always from for all your e-mails, love, prays, and support -- especially for the CT Scan on Friday, 1/19, at 5 PM.

-- Mark & Vinny

Sunday, January 07, 2001

Last week we got a somewhat unsettling phone call from Mount Sinai. Due to hospital bureaucracy, the remaining appointments required for Vinny to be evaluated for receiving a liver transplant had been scheduled over the next two MONTHS, but with the diagnosis of liver cancer in Vinny's last CT Scan, they wanted these final tests re-scheduled within the next two WEEKS, so that we could move forward.

On the plus side, this does mean that we're finally entering the final stretch in the evaluation for Vinny to qualify to receive his liver transplant. We should hear from the Mount Sinai Recipient Review Committee by the END OF JANUARY -- about the same time that our 6-page magazine story appears on newsstands in POZ magazine (which we'll broadcast to this list as soon as we're contractually able to do so).

But, in the next two weeks between now and then, Vinny has to meet with EIGHT different doctors and undergo numerous procedures, including rather extensive oral surgery with our long-time dental team in West Hartford, the Mount Sinai transplant psychiatric evaluation (which we're told is quite an ordeal and NOT just a rubber-stamp process), and another CT scan to follow up on the liver cancer. The results of the CT Scan are particularly important, for as long as the liver cancer is at least stable, it buys more time for everything else.

This will certainly be a challenging time for Vinny and I, and we'd like to particularly ask for your prayers and good wishes, now more than ever. Thanks again for all your love and support.

-- Mark & Vinny

Wednesday, December 20, 2000

In the last month, both Vinny and our country have gone through a difficult time.

Vinny's diagnosis of liver cancer took a little getting used to. It still does. It's certainly NOT as bad news as it could be -- but it IS one more obstacle to surmount. Vinny also has just gotten cleared to have some substantial oral surgery done in January (it can't wait) -- so there are problems on two fronts -- but we're really looking forward to spending quality time over the extended Christmas Weekend with our families and dear friends -- which is really important to us, especially THIS year.

Vinny is looking better than he's looked in months -- all the rest, good food, gym time, and spiritual renewal is working very well for him. Thank you all for your love, prayers, and e-mails. They've really helped BOTH of us!

Also on the plus side, because of our sale of my marketing company (Metamorphics Media to Mal Dunn) we now can continue our health benefits (COBRA) with far MORE benefits and at LESS cost, then we were able to do before the sale -- how often do things like that workout? We've finally gotten our insurance company to approve and schedule Vinny's psychiatric evaluation for February 6 -- which is about eight weeks later than we would have liked, but it's the earliest we could get. Once that evaluation is written up (late February), then VINNY'S case can be put before the transplant recipient review board, and ONLY THEN AFTER VINNY IS APPROVED may Gregory begin HIS whole evaluation to ensure that there is no hidden medical condition that could prevent him from being a good donor candidate. Given this updated timetable, we're not sure WHEN all this will happen.

Boy, I never cease to be amazed at just how difficult it is to navigate the HIV/Transplant process -- which I guess is why there have only been something like 15 of them actually done up until now in the USA .

More good news is that the 4,000+ word story for the February/March issue of POZ Magazine about Vinny's Transplant Process (which I wrote as a PAID contributor) is *finally* done and has just gone to print, and it should be on newsstands and in the mail in a few weeks. We're very happy with it. We'll broadcast an on-line copy as soon as were contractually able to do so. For those who haven't seen POZ is a smart, glossy, consumer magazine for people with HIV/AIDS. To date, more than 2,500,000 copies of the magazine have been distributed, making it the most respected single source of public HIV/AIDS information in the world. It's our hope that Vinny's visibility from this article will give us some much needed ammunition to fight the difficult battle ahead towards our insurance company actually funding the transplant itself.

== ELECTION HUMOR ==

The whole election made me (and makes me) crazy, on so many levels. I make a habit of *NOT* forwarding this sort of humor, but it just seemed that we need a little comical, holiday detour about here... [thank's Steven Price]

BUSH LEGAL TEAM SUES SANTA CLAUS

By S. Artist Reuters

AUSTIN, Tx (Dec. 4) - Attorneys for Texas Governor George W. Bush filed suit in federal court today, seeking to prevent Santa Claus from making his list and then checking it twice. The complaint seeks an immediate injunction against the beloved Christmas icon, asking the court to effectively ban his traditional practice of checking the list of good boys and girls one additional time before packing his sleigh.The suit, filed in the Federal District Court of Austin, Texas, asks a federal judge to "hereby order Mr. Claus to cease and desist all repetitive and duplicative list-checking activity, and certify the original list as submitted, without amendment, alteration, deletion, or other unnecessary modification." "There are no standards for deciding who is naughty, and who is nice. It's totally arbitrary and capricious. How many more times does he need to check? This checking, checking, and re-checking over and over again must stop now," said former Secretary James Baker. Baker further claimed that unnamed GOP observers witnessed an elf removing all boys named Justin from the 'nice' list, filing them under'naughty' instead because "everyone knows all boys named Justin are brats." Gov. Bush cited the potential for unauthorized list tampering, and blasted what he called the "crazy, crazy mess up there at the North Pole." "Their security is really awful, really bad," said Bush. "My mother just walked right in, told 'em she was Mrs. Claus. They didn't check her ID or nothing. "Meanwhile, Dick Cheney, Gov. Bush's running mate, issued a direct plea to St. Nick himself. "Mr. Claus, I call on you to do the honorable thing, and quit checking your list. The children of the world have had enough. They demand closure now," Cheney said, adding that his granddaughter has already selected a name for the pony she's asked for. The Rev. Jesse Jackson was quick to respond to this latest development with plans to lead his protesters from Florida to the North Pole via dog sled. The "Million Man Mush" is scheduled to leave Friday. "We need red suits and sleighs, not law suits and delays," Jackson said.Santa Claus could not be reached for comment, but an spokes-elf said he was"deeply distressed" by news of the pending legal action against him."He's losing weight, and he hasn't said 'Ho Ho' for days," said the spokes-elf. "He's just not feeling jolly."A weary nation can relate.

We'll keep you posted.

-- Mark & Vinny

Monday, December 11, 2000

Vinny has now completed all but one of the countless tests for his evaluation towards qualifying to receive a liver transplant. He had been scheduled for his psychological evaluation almost a month ago, however our HMO medical insurance processes mental health coverage out of a separate office from physical health coverage.

Although we were approved to go "out of network" to see the transplant specialists at Mount Sinai for Vinny's PHYSICAL evaluation, the mental health administrators kept insisting that Vinny see an "in network" psychiatrist, and Mount Sinai kept insisting that we needed to see one of their psychiatrists who understood the complexities of transplants.

It looks like we've finally gotten the insurance company to understand this, and should be scheduled for this last hurdle very shortly. Once that's done, Vinny's case will be put before the " transplant recipient review committee" and we should have an answer in late December, or because of the various holidays, perhaps early January.

Once VINNY is approved, then Gregory can begin HIS evaluation process to see if he's a viable donor. If Gregory IS able to be a donor, then the transplant will be sooner rather than later -- although we don't know WHEN that may be yet. If not, then Vinny would have to wait for a cadaver's liver to become available, and then this availability will determine the timing of the transplant.

Also, once Vinny is approved by Mount Sinai, we have to go back to the insurance company and get THEM to approve paying the MILLION OR SO DOLLARS required for the whole transplant procedure. We don't expect this to be easy, but it should be do-able.

Vinny's countless tests have so far provided both GOOD news and BAD news.

The GOOD NEWS is that things went better than we expected with the cardiologist, infectious disease specialist, and hepatologist. We're told that Vinny's heart is in great shape ("the heart of a thirty year old") -- but then WE ALWAYS KNEW what a wonderful heart he had. It was nice to have such emotional stuff confirmed by ultra-sound .

The BAD NEWS was that we just got a call from Sam Sigal, our senior guy at Mount Sinai, and Vinny's latest liver CT Scan showed TWO small (1 cm = 1/2") tumors in his liver. Given that Vinny has cirrhosis and hepatitis-B, these ARE therefore a form of LIVER CANCER, which is quite common in cases like his.

Small tumors like these tend to be well behaved. We'll repeat the CT Scan every two months to monitor the situation. It's likely that the tumors can remain stable for many months or even a year without any treatment. If the tumors DO start to grow, we MIGHT have to begin anti-cancer treatment -- depending on the timing of the transplant. On the plus side, these tumors ARE a "listing criteria" so this can greatly expedite Vinny's acceptance into the transplant program.

As you might expect, these last few weeks have been both physically and emotionally difficult for us. Vinny's spirits are mostly pretty good, although his stamina is way down, and he needs to rest a lot. We're looking forward to spending the holidays with our family and getting through the next steps in this process. Naturally, we'll keep you all posted as news develops.

-- Mark

== Vinny adds: ==

I want to thank everyone who sent me e-mail, cards, gifts, prayers, and good wishes over the last weeks. They have ALL really helped! I've seen some 15 or 16 doctors and have not written out thank you cards and am behind on my e-mail, so please forgive me. I don't want to play favorites, but Ellen Shanley's gift of the Lucky Bamboo arrangement has become a part of our household and both Mark and I just love it. Our brothers Joe and Jeff have been particularly wonderful and supportive. Thank you! I ask you all to continue your prayers they are helping. There are a few down times but for the most part, I'm in a very positive space. You all mean a lot to me, and all your love keeps me going.

Love, Vinny

Thursday, October 26, 2000

A little over two months ago, Vinny’s liver specialist suggested that his condition had progressed to the point where we should evaluate the possibility of a liver transplant.

Although liver transplants have been performed successfully since 1967, they remain the most difficult of the organ transplants. Because of huge expense, effort, and the extremely limited supply of donor organs, there is a extremely involved evaluation and prioritization process. The goal is to screen out those who do not yet require such a risky and dramatic procedure, prioritize those most in need, and to reject those who are not likely to successfully recover from the process.

Up until last year, people with HIV/AIDS were not even considered as organ transplant recipients. It was feared that the strong anti-rejection medications could devastate the already suppressed immune system (it proved not to effect the same systems) and that people with AIDS would have less then five years to live even with a transplant, so the enormous effort couldn't be justified. With the new AIDS medications, this also proved to be not true.

But HIV/AIDS certainly does complicate the process.

In today’s world of “managed care” the first hurdle we had to cross was to get our health insurance company to authorize the astronomical cost of the transplant evaluation process. Because we have HMO-style insurance, they naturally wanted this done “in the network” of contracted doctors and facilities. However, only a handful of hospitals and doctors are working with people with HIV (only one hospital in the greater New York City area), and as luck would have it, none of these are in our insurance company’s “network.”

Therefore, initially, we were refused at Mount Sinai because of our insurance and referred to New York University Hospital who refused us because of HIV who referred us back to Mount Sinai who referred us back to NYU. Luckily, we managed to escalate this to our insurance company’s transplant case manager’s supervisor who was able to break this infinite loop and make a special exception and authorize us out-of-network, at least for this evaluation process.

On Tuesday, October 17, Vinny and I spent our first of three days of tests, exams, and interviews at the Recanati/Millter Transplant Center at Mount Sinai. When we have finished, we will have completed:

* Evaluation by Social Worker
* Evaluation by Liver Transplant Team (four separate doctors and 13 vials of blood!)
* Psychiatric Evaluation
* Cardiology Evaluation
* Dental/Periodontal Evaluation
* EKG
* Chest X-Ray
* Abdominal CAT scan
* Abdominal Ultra Sound
* Infectious Disease Evaluation

Once all these tests and evaluations are complete, the transplant board will review them and we will hopefully have their recommendation shortly before Christmas. Their extremely preliminary feeling was that Vinny might be more stable than we had at first thought, and so we might be able to delay a transplant for quite some time -- perhaps as long as a year or two. This would be great news, since there has been only one actual surgery like Vinny’s so far, and we'd rather they get the kinks out and practice on someone else first, if at all possible

As daunting as this process seems, the folks at Mount Sinai were actually extremely friendly, knowledgeable, and reassuring. Frankly, we were quite surprised. We had expected faceless bureaucracy, but instead found wonderful people. We learned a lot from them, and were given quite the pile of literature for homework. They were very supportive of our relationship, and in fact said that it was an important factor in being accepted into the program, since no one could go through this process without strong, committed on-going, long-term support. They stressed that this was a team effort including the medical team, the patient, and the care-giver.

Once Vinny is accepted into the transplant program, he will be added to the UNOS (United Network for Organ Sharing) “list” -- a centralized, categorized, prioritized computer database to match up the all too scarce organs as they become available with those in need. Vinny would accumulate “points” and move up the list over time and as his condition worsens.

There is no reason for there to be such a desperate shortage of donated organs. We'd like to ask your help to get as many people as you can to visit: http://www.ShareYourLife.org/ and give the gift of life by donating their vital organs once they don't need them anymore. Last year less than 5,000 livers became available nationwide for transplantation. Each person makes a big difference!

Luckily we do have another option: Once Vinny's accepted into the program, we are able to to begin the evaluation of using a “living donor” who could donate about 60% of his liver -- which fully regenerates in six to eight weeks. I'm not a match, but it looks like Vinny’s dear friend Gregory may well be, and he has volunteered to help. We aren't going to really know if this is an option until early Springtime. This has the tremendous advantage that we won't have to wait until Vinny is gravely ill to progress to the top of “the list.” Transplanting him earlier would greatly improve the likelihood of a successful outcome. The downside is that this procedure has only been performed here in New York for two years, and only once on someone who was HIV-positive, so we'd like to have a little more clinical experience before it’s Vinny’s turn, if at all possible.

So far, the only serious hiccup that we did run into has been a stupid legal one: Vinny’s AIDS medications cause rather extreme nausea and vomiting. All of the effective anti-nausea medications are metabolized in the liver, and if Vinny were to take them (he has) he would end up in the hospital with encephalopathy, a toxic, dementia-like condition (he has). It was suggested by Vinny’s medical team that “many other patients have found medical marijuana to be an effective treatment in cases like this” -- this is legally all that a doctor is allowed to do in New York State.

Unfortunately, Vinny’s use of medical marijuana is classified as “illegal drug use”, and therefore he would be rejected by the folks at Mount Sinai from consideration as an “active drug addict” Naturally, when we learned this two months ago, Vinny stopped using marijuana (and signed a contract allowing random drug testing) and he just had to get used to nausea and vomiting on a daily basis.

For those of you politically minded, please visit the Marijuana Policy Project at http://www.mpp.org/ to learn more and to lend your support to help change these stupid laws that withhold effective medicine from people who desperately need it!

Thanks again for all your love, good wishes, and support. Vinny particularly wants to thank so many of you for your prayers from such a wide range of religions and belief systems -- Vinny sees these prays as a special expression of love, and it's that love the keeps him alive.

We'll keep you posted.

-- Mark & Vinny

Wednesday, October 25, 2000

Since so many of you are newly being included in Vinny's medical update, I thought I'd catch everyone up with some medical background information.

As part of a routine medical exam back in 1983, Vinny was diagnosed as having previously had Hepatitis-B sometime in the past, and that his system had still not been unable to "clear" the virus, so he therefore had CHRONIC Hepatitis-B. In 1989, also as part of routine medical work, Vinny was further diagnosed as being HIV-positive as well.

Learning that he was HIV-positive lead Vinny to re-doubling his efforts for a healthy lifestyle: eating a largely vegetarian, whole-foods diet, meditation, and yoga. He also felt strongly that invasive "western medicine" largely did more harm than good for those living with HIV -- frankly, at that time, he was probably right. He started an HIV-positive support group in the New Haven area, and was a frequent student at the Kripalu Yoga center in Massachusetts. Vinny and I first met as randomly assigned "prayer partners" at a Marianne Williamson HIV-positive workshop in 1993.

On January 2, 1995, while we were vacationing in Miami's South Beach, my mother died, and when we flew back to New York, we learned that Vinny's really rotten case of flu was actually PCP Pneumonia -- at the time, the leading cause of death for people with HIV/AIDS. Although Vinny was dramatically allergic to the treatment for PCP, he was able to be desensitized to this allergy by an experimental technique (at that time) of slowly increasing dosage daily over a number of weeks.

Once he had fully recovered from PCP, he began taking AZT and other anti-HIV medications. The AZT re-activated Vinny's bi-polar condition (manic depression) that had been in remission without any drug therapy for over half a decade. The next six months were a difficult time as we adjusted and re-adjusted HIV/AIDS and bi-polar medications.

By the Fall of 1995, Vinny had once again stabilized and was in good health for a number of years.

All those medications that we're keeping Vinny healthy and alive, DID eventually take there toll. Vinny developed "wasting syndrome" where the body can't absorb enough food to maintain his weight, and at the same time he developed "lipodistrophy", a condition caused by some anti-HIV/AIDS medications where the body moves what fat it does have from the rest of the body into the belly. The combination was particularly unfair, as he was losing weight, looking gaunt, and gaining a big belly.

Vinny went on to develop a mysterious condition where he had intense pain in his GI tract on a daily basis. Although countless test were run, it wasn't until years later that the cause was finally diagnosed...

In the Summer of 1999, he developed anemia, and his blood counts were way down. After various tests, it was determined that Vinny had internal bleeding. His chronic Hepatitis-B has caused cirrhosis of the liver. Since the liver acts as the body's main filter to remove impurities from the blood, when the liver is somewhat clogged by scar tissue (cirrhosis), this can cause pressure to build up in the plumbing between the heart and liver, thus causing ballooning (varicose veins) and leaks (internal bleeding) in the hoses (veins). This is exactly what happened to Vinny.

For the next year, Vinny went into the hospital on a monthly basis, for the surgeon to perform painful endoscopic procedures to "band" or "cauterize" these potential leaks and repair actual ones.

We're told that Vinny holds the Roosevelt St. Luke's Hospital record for the most number (by far) of successful endoscopic procedures!

By late May 2000, the condition had deteriorated to the point where drastic action was required to avoid life threatening internal bleeding.

On June13, a TIPS Shunt (Trans-jugular Intra-hepatic Porto-systemic Shunt) was installed in a very high-tech, three-hour procedure, where a catheter is put through the neck and what's basically a partial liver bypass implanted by remote control to relieve the backed up pressure. Vinny's internal pressure number went from 15 (dangerously high) to 6 (normal, even on the LOW side) which GREATLY reduced the likelihood of more internal bleeding.

Unfortunately, with that much blood bypassing being filtered by the liver, various toxins built up to the point where Vinny developed a condition called "Portal-systemic encephalopathy" where he had extreme fatigue, disorientation, hand-eye coordination loss, memory loss, etc. It was sort of like instant Alzheimer's. Luckily, it was also easily reversible with a combination of drugs -- although getting the right balance took a few weeks.

This week, on Tuesday, August 22, we'll meet for the first time with the liver transplant specialist to evaluate his options in that direction. One possibility is a "partial liver transplant" which is a more available option. Hopefully, a transplant is not an option that we'll have to take advantage of in the near future, but it's better to have done our homework, just in case.

On a personal note, Vinny and I would like to thank you all for your love, support, thoughts, prayers, e-mail, phone calls, notes, and for the overwhelming support that has lead to our setting up this e-mail newsletter. It really means so much to us. Please keep in touch.

-- Mark & Vinny

Tuesday, October 24, 2000

Tremendous advances have been made over the last two decades in the treatment of HIV/AIDS. For those of us who are lucky enough to have great private health insurance plans, we can afford the obscenely expensive "cocktails" of the latest wonder drugs.

We've been lucky, and these have been VERY effective for Vinny. We have won the battle, and for a number of years now, we've beaten back the HIV virus to the point where there is so little HIV virus detectable in the blood that he's said to have "zero viral load for HIV."

But at what cost?

All of these drugs, to some degree, are metabolized in the liver, and for someone with chronic Hepatitis-B, they speed the progression of his liver disease -- as well as all sorts of other side effects and complications. At this point, Vinny's liver is now mostly clogged with scar tissue (cirrhosis). The TIPS Shunt, solves some of the mechanical issues of moving blood, but we are getting to the point where only so much can be done with what Vinny has left.

Vinny may well be able to keep stable for a few years doing the sort of things we're doing, or things could destabilize in some number of months to the point where we'd have to do something more dramatic...

The next step is to look at liver transplantation.

Up until THIS YEAR, Vinny would not have been considered a potential candidate because he is HIV-positive. The traditional thinking had been that people with HIV simply wouldn't live long enough to make the huge effort and expense of a transplant worthwhile. Now that people with HIV are living longer and are being healthier, there are a FEW places where doing organ transplants to people who are HIV-positive.

One of those few places is Mount Sinai Medical Center in New York. On Tuesday Vinny and I met Dr. Sam Sigal who is one of the people heading up this program, and we began what is likely to be a VERY LONG process. We discussed the two major options: a full liver transplant, which tends to have a long waiting list, and the "living donor, partial transplant", which might be a more viable option for us. Again, there will be numerous meetings and endless tests before we really know more.

In the mean time, Vinny's got some great support in all this: my sister's boyfriend Andy has had an organ transplant, and has been very helpful with background information. A few weeks ago, Larry Hagman, the actor who probably best known for playing JR Ewing on "Dallas" and Major Anthony Nelson "I Dream of Jeannie" -- and who is a liver transplantee himself, called Vinny and they talked for an hour. Vinny said that he was truly inspirational on so many levels, and asked Vinny to call day or night, if he could help. Just goes to show you HOW DIFFERENT an actor can be from the character he portrays.

-- Mark & Vinny

Sunday, June 18, 2000

I'm happy to report that Vinny is once again HOME from the hospital -- although it may take a day or two more for the Lactulose to remove the toxins that built up in his blood and temporarily scrambled his brain. It was kind of scary that he could get all those dramatic symptoms so quickly, but I'm told that they disappear quickly as well.

Vinny's still been sleeping a LOT and is right now taking a much desired shower.

If he's up to it (and we think he will be) we'll go as planned to the off-Broadway show The Vagina Monologs staring Vinny's favorite, Ally McBeal star, Calista Flockhart!

I'm sure he'll get on the phone and on e-mail pretty soon.

I'll keep you posted...

-- Mark

Saturday, June 17, 2000

[for those of you who I missed e-mailing from my wireless e-mail early...]

We'll today certain has been a rough day. At 4 AM Vinny woke having apparent difficulty breathing (probably was anxiety/mental related -- see below) and we went off to the ER.

Apparently one of the common side effects of a shunt is toxic build up in the blood (since some blood is bypassing the liver). This can cause extreme fatigue, disorientation, hand-eye coordination loss, memory loss, etc.

The good new is that it's pretty easy to treat -- but it takes time to reverse.

Vinny is therefor at Roosevelt Hospital (room 9B-29a) until Sunday or Monday. His phone is 212-636-8629, although I take the phone off the hook while he's resting.,

I'm on my wireless e-mail sitting by his bedside.

He should be up and around soon. I'll keep you posted...

-- Mark

Tuesday, June 13, 2000

This morning Vinny went into the hospital to have a TIPS procedure -- and I'm happy to report that everything went very well today -- so well, in fact, that he may well get out of the hospital on Wednesday rather than the previously scheduled Thursday or Friday.

A TIPS Shunt (Trans Jugular Intra-Hepatic Porto Systemic Shunt) is where they put a catheter through the neck and put what's basically a liver bypass by remote control to relieve the backed up pressure. Vinny's internal pressure number went from 15 (dangerously high) to 6 (normal, even on the LOW side) -- this will GREATLY reduce the likelihood of more internal bleeding.

Although he's a bit tired from the three-hour surgery (with general anesthesia), Vinny is resting comfortably in his hospital room and is actually feeling BETTER than he felt going in this morning.

-- Mark

Wednesday, March 22, 2000

Well, we had our big meeting with the liver specialists yesterday and then Vinny had his endoscopy # 8.

Actually, the news was surprisingly GOOD. Although most of Vinny's liver is shot from the Cirrhosis, the little that is left DID responded rather well to treatment, and for now, is doing the stuff that livers need to. This is rather unexpected and quite a relief. He's still getting those potentially life threatening Esophageal Varices and related bleeding, but those too are still patchable.

Yesterday, they didn't want to risk using the larger "banding" robot arm, so they used the "old fashioned" endoscope with chemical injections that cortirized the sites of the potential bleeding. it's just as effective a treatment (which is what's really important) but it hurts a lot more.

We talked at length about having a liver transplant or a partial transplant -- certainly an important process for us to start, with lots of groundwork to do, but its not the NEXT step. Actually since things are going so well where we are, we'll just keep patching for now -- with an endoscopy every month and a doctor's visit and blood work every month, with those two cycles staggered, so Vinny is looked at every two weeks, so we hopefully catching anything early enough.

When the patching stops working, we'll next go with a "shunt" which is basically a liver bypass to relieve some the backed up pressure behind the liver. Unfortunately, it also bypasses some of the filtering process that the liver does. At that point, we re-address the transplant issue.

Thanks for all your love,
Mark & Vinny

Tuesday, January 18, 2000

Vinny went in for endoscopic "banding" procedure today, but it turned out that things were more stable than we had expected (and NO bleeding!), so no actual banding was required. Certainly great news, although it would have been nice to know this BEFORE he had to get that robot arm down his throat.

We asked a lot of frank questions as to how much longer we could expect to be able to keep patching this problem, and was happy to hear that their expectation was "years" (not "months" as we feared). Basically, we're going to monitor things more closely and add additional meds to the cocktail.

The bad news from last week was that the esophageal varicose veins had come back so quickly, and that they had spread to the stomach (were they can't be patched the same way).

The good news today was that things were still in a very manageable state -- and should things deteriorate, there were a number of steps that we could take after this The most likely is a shunt through the liver to reduce the pressure. It sure is nice to know we have future options!

We're now cleared for our trip to South Beach (1/22 - 1/31), and will check in with our doctors the day we return. Carpe Diem!

Thanks for all your love and support. We'll keep you posted...

-- Mark

Saturday, January 15, 2000

It turns out that Vinny's internal bleeding *WAS* caused by a return of his esophageal varicose veins. He was admitted to Roosevelt St. Luke's as soon as he returned to NYC on Thursday, where he received another round of endoscopic "banding" and a transfusion. He checked himself out first thing on Friday, and was back in West Hartford, cutting hair later that day .

We're working at Metamorphics Media on Monday (the office is closed) and on Tuesday, we'll spend the day at the hospital again and have another round of endoscopic "banding." We're planing that he'll return to West Hartford to cut hair later Wednesday afternoon, Thursday, and Friday. On Saturday, we're off to South Beach.

The esophageal varicose veins are caused by the cirrhosis of the liver due to his chronic hepatitis B, and not really AIDS-related -- although the AIDS medications do make the problem worse.

The liver acts as the body's main filter to remove impurities from the blood. The heart is the pump. In Vinny's case, the liver is somewhat clogged by scar tissue (cirrhosis) and that causes the pressure to build up in the plumbing between the heart and liver, thus causing ballooning (varicose veins) and leaks (internal bleeding) in the hoses.

-- Mark

Tuesday, September 14, 1999

This morning Vinny had the second of three or four endoscopic procedures to remove (or "band") this esophageal varicose vains. These vains were bleeding intermittently, causing his anemia. This whole problem was caused by his cirrhosis of the liver due to his chronic hepatitis C, and not directly related to AIDS. The procedure was a success and went MUCH easier than the previous one. Afterward, he tried to swallow his morning pills and experienced much greater pain the from prior procedure. He's currently resting, and I'm staying close. The third (and perhaps final) procedure will be next Tuesday morning.

-- Mark

Tuesday, August 31, 1999

Vinny's tests showed that he did NOT have bleeding ulcers but rather some
condition that is like varicose veins in the esophagus. These bleed
internally intermittently, so that's probably what's caused his anemia.
This condition is due to his chronic Hepatitis and unrelated to AIDS. He'll
have to go into the hospital (on an out-patient basis) for three or four
treatments 10 days apart -- the first one on Thursday 9/2 at 8 AM. They use
this little robot arm with fiber optics and place little rubber bands on
the lumps so they fall off. We'll be juggling the schedule around a bit to
accommodate all this, but he shouldn't miss any significant amount of time
at the salon or Metamorphics. In short, not great, but not as bad as it
could be.

-- Mark

Thursday, August 12, 1999

This morning Vinny had the second of three or four endoscopic procedures to remove (or "band") this esophageal varicose vains. These vains were bleeding intermittently, causing his anemia. This whole problem was caused by his cirrhosis of the liver due to his chronic hepatitis C, and not directly related to AIDS. The procedure was a success and went MUCH easier than the previous one. Afterward, he tried to swallow his morning pills and experienced much greater pain the from prior procedure. He's currently resting, and I'm staying close. The third (and perhaps final) procedure will be next Tuesday morning.

-- Mark