Several months after I was declared cancer-free, a few of my friends suggested that I venture back into the dating scene - in their minds they had decided that after what I went through it was time to treat myself to meeting some new people and having a bit of romance in my life. Their intentions were good, bless them for that; but, my 1st date as an HIV+, post-cancer survivor was a disaster!
It was one of those blind date experiences. That shoulda been my 1st red flag because all the while I kept thinking "Oh please God, not another one of those snooty, white Back Bay types that talks constantly about himself!" Please pardon my racist comment but you would have to live here to understand that that is a common term used quite often to describe certain people. I know, I know, it doesnt excuse me using the term "white" in a racist way but that's the way it is in these parts.
Unlike most people, I have no particular physical "type" when it comes to what I look for in a man. I just figure if the guy can handle someone like me, he's gotta be brave and God help him! Seriously though, he appeared to be a very nice person, had a pleasent personality and he was cute - about 6' 3", nice medium build with very muscular arms, green eyes, and slightly curly jet black hair, which was so gorgeous you just wanted to say "You keep talking slim, I'll just give you a nice scalp massage Sweethaht"....
Anywho, he took me out to dinner at Nick's (or was it Rick's?) Restaurant, the same place where Sinatra use to eat when he was in Beantown, and we hadda very nice dinner. That restaurant closed several years back but it was truly a Boston institution, located right on the water and across the way from where all the Harbor tour boats as well as the ferries from Cape Cod would dock. In fact, due to its location it was the perfect place to take a nice stroll along the harbor area after dinner. And that's what we did.
While we were walking, he decided to hold out his hand so that he could hold mine and I thought to myself "Well Sparky, this is impressive, you just earned a few bonus points." But as we all well know, the Feet of Fate always like to kick who right square in the ass? You guessed it...
We were chit-chatting about some of the Harbor history-facts and minute stuff like that when all of a sudden he said to me "So, what's the deal with the cancer stuff?" and I stopped right in my tracks and said "What do you mean?" I've always known that you do not discuss private medical stuff with someone you dont know, especially on a first date, just totally inappropriate. Apparently, one of my friends mentioned to him that I just went through a battle with cancer, I just wish my friend would have had the common decency to let me know this or at least discuss it with me ahead of time. So I thought to myself "I'll just be honest and take a chance that the guy's alright."
All I said was "Yes" and he asked me what kind. What I should have said is "I dont feel comfortable discussing that with you, but thank you for the nice evening" and walked away and taken the T home. But, I've always believed there is something good and loving in everyone, so what did I do? I told the truth. I responded "Testicular cancer but I am recovering pretty well so far." I made a mistake by saying that but didnt realize it till a minute later.
He giggled - yes, the man actually giggled - and said "Boy, that sure does give new meaning to the term "damaged goods" doesnt it?" Talk about a deer getting hit with a set of headlights - I could not believe it! I just stood there, my mouth literally opened and dropped for what seemed like 5 hours (but was actually about a minute and a half) and I just could not speak. I, Mr. Mouth himself, went numb. All kinds of thoughts rushed through my head...
Did I hear this correctly? Is this in my imagination? But it wasnt just shock and angry disbelief that was on my mind, I was hurt, I felt attacked and wounded in every sense possible. How anyone could ever say that to another human being, regardless of the situation, the location of the exchange, etc, etc. was totally beyond my human comprehension - it still is, obviously so or I wouldnt be sitting here writing about it.
What did I do? My natural inclination would've been to literally belt the guy so hard that his great-great-great grandmother woulda done triple-summersaults in her grave - yes, that is how angry I was and I've only been that angry about twice in my life. But, I'm one of those people that believes a person should use physical violence under only one condition and one condition only - in self-defense. All I said was this "Wow...I gotta go."
Oh he followed after me and kept asking what was wrong, and then apologizing, and then asking if he could drive me home, and the ultimate final line that tells you all the guy was really interested in the first place was getting a piece of ass - "I think you're being a bit sensitive." So I just got on the T and went home. Sure, I was upset for a long time afterwards but I thought to myself "Why let one jerk affect my chances of finding someone decent?" That's something we all need to keep in mind regardless of our situations - there's always gonna be losers out there, we just gotta keep our sights set on finding the winners. Thanks for reading.
Thursday, May 27, 2010
Wednesday, May 26, 2010
The Benedryl Story - Wednesday, May 26, 2010
The best way to describe how I felt physically during each day of my chemo, as well as several days after each cycle ended was a mixture of pensive, nautious, light-headed, restless, you name it, it wasn't a fun time at all.
I had MAJOR problems sleeping at night, which started during the 1st cycle of chemo. It was so bad that on the 3rd morning of chemo I told one of my oncologists about it and so he prescribed Ativan. I tried it and it didn't work, didnt even phase me. So after a couple of days we talked about it again and here's what he told me...
"Children's Benedryl Liquid, any flavor." And I said "You gotta be kidding me, but what if it hurts me, what if it affects me negatively with all the medications I'm currently on, plus with the chemo drugs inside of me??" He knew my entire medical situation quite well after talking with my infectious diseases doctor, my urologist and so on..so he looked me square in the face and said "(my real name) what have you got to lose?" And, he was right.
So, I tried it and...it worked!!! Omg it friggin worked and as dead sick as I was I was overjoyed!! I slept like a baby from that night onward until I was finally declared cancer-free months later! It was amazing! Truly amazing that something so simple, something so inexpensive, something so over-the-counter could give my worn-out body the extremely required sleep needed in order to fight one of the hugest medical battles of my life.
And the ONLY bad side effect was that I felt groggy the next morning. Groggy I could handle, walking around like the living dead? No way Baby.
The dosage was simple - personally, I loved the Cherry-flavored version(!) - take 2 TEAspoons of it; BUT, NOT the Teaspoon sizes from the little plastic cup on the top of the bottle - instead, the standard kitchen sized teaspoons one would use for everyday use. In most cases, within 30 to 45 minutes a person will start to fall asleep very gently and without any struggle whatsoever.
I am NOT a medical doctor and I am NOT advising you or anyone with any type of illness/disease to try this. I am only sharing with you what worked for me and it worked wonders! DO NOT try this product without speaking to your doctor/main medical professional FIRST. What works for me may not work for you.
Back then I had no problems taking the Children's Benedryl liquid, it did not interact with any of my drugs, both the chemo drugs - and when I was done with that, the HIV drugs either. Last week I had a restless night and was tempted to take some but after 11 years I thought to myself "Better call the pharmacy first and ask just to be on the safe side." I did and the head pharmacist told me there would not be any negative drug interactions; BUT to doublecheck with my doctor. Sooooo, I stayed up till 3 a.m. till I finally fell asleep. Woke back up at 7:30 a.m., called my main doctor and she confirmed it - it would not be a problem. And it wasn't.
I think what the one oncologist from 11 years ago - unless I made a mistake in the interpretation? - was trying to tell me when it came to my apprehension of trying the product was this - "Look, you got so many aces stacked against you, what is one harmless children's over-the-counter medication gonna really do to your house of cards?" And he was right. For me, it was worth taking that chance.
But again, that doesn't mean it's right for everyone else. I would hate to suggest to anyone to try what I did and then end up getting very sick or ending up in a coma, know what I mean? ASK YOUR DOCTOR FIRST AND/OR MEDICAL TEAM before you consider trying what I did.
Last month on my open Facebook homepage I read a post where a fellow Hiv'er I am friends with and another I do not know were briefly exchanging experiences about how they just could not get any normal sleep, one of the two for a very very long time. I wanted sooooo bad to say "Look you gotta try what I did" but that woulda been the wrong thing to do, again, I woulda felt so bad if either of them tried it with
not-so-positive results.
And that is why I was compelled to write this particular post, not just to share my experiences or more details from my cancer period - but because I cannot imagine anyone not being able to sleep normally when there is a POSSIBILITY that something very simple may just do the trick for them. Yeah, sure, I've had many restless nights since those cancer days but when the going-gets-tough, I take the stuff and it works like a charm, like it always has.
Then again, it's not like the friend or his friend would've listened to me anyways. People are still discounting me because I am not 100% open about my HIV+ status, but I cant emphasize this enough to everyone I know here on Facebook and beyond - fictional name or not, I am real and my experiences are real, it doesnt make me count any less as a HIV+ individual or a human being. I wouldn't be writing one single word if it wasn't the truth and didn't come straight from my heart. I mean it. Thanks for reading everyone.
I had MAJOR problems sleeping at night, which started during the 1st cycle of chemo. It was so bad that on the 3rd morning of chemo I told one of my oncologists about it and so he prescribed Ativan. I tried it and it didn't work, didnt even phase me. So after a couple of days we talked about it again and here's what he told me...
"Children's Benedryl Liquid, any flavor." And I said "You gotta be kidding me, but what if it hurts me, what if it affects me negatively with all the medications I'm currently on, plus with the chemo drugs inside of me??" He knew my entire medical situation quite well after talking with my infectious diseases doctor, my urologist and so on..so he looked me square in the face and said "(my real name) what have you got to lose?" And, he was right.
So, I tried it and...it worked!!! Omg it friggin worked and as dead sick as I was I was overjoyed!! I slept like a baby from that night onward until I was finally declared cancer-free months later! It was amazing! Truly amazing that something so simple, something so inexpensive, something so over-the-counter could give my worn-out body the extremely required sleep needed in order to fight one of the hugest medical battles of my life.
And the ONLY bad side effect was that I felt groggy the next morning. Groggy I could handle, walking around like the living dead? No way Baby.
The dosage was simple - personally, I loved the Cherry-flavored version(!) - take 2 TEAspoons of it; BUT, NOT the Teaspoon sizes from the little plastic cup on the top of the bottle - instead, the standard kitchen sized teaspoons one would use for everyday use. In most cases, within 30 to 45 minutes a person will start to fall asleep very gently and without any struggle whatsoever.
I am NOT a medical doctor and I am NOT advising you or anyone with any type of illness/disease to try this. I am only sharing with you what worked for me and it worked wonders! DO NOT try this product without speaking to your doctor/main medical professional FIRST. What works for me may not work for you.
Back then I had no problems taking the Children's Benedryl liquid, it did not interact with any of my drugs, both the chemo drugs - and when I was done with that, the HIV drugs either. Last week I had a restless night and was tempted to take some but after 11 years I thought to myself "Better call the pharmacy first and ask just to be on the safe side." I did and the head pharmacist told me there would not be any negative drug interactions; BUT to doublecheck with my doctor. Sooooo, I stayed up till 3 a.m. till I finally fell asleep. Woke back up at 7:30 a.m., called my main doctor and she confirmed it - it would not be a problem. And it wasn't.
I think what the one oncologist from 11 years ago - unless I made a mistake in the interpretation? - was trying to tell me when it came to my apprehension of trying the product was this - "Look, you got so many aces stacked against you, what is one harmless children's over-the-counter medication gonna really do to your house of cards?" And he was right. For me, it was worth taking that chance.
But again, that doesn't mean it's right for everyone else. I would hate to suggest to anyone to try what I did and then end up getting very sick or ending up in a coma, know what I mean? ASK YOUR DOCTOR FIRST AND/OR MEDICAL TEAM before you consider trying what I did.
Last month on my open Facebook homepage I read a post where a fellow Hiv'er I am friends with and another I do not know were briefly exchanging experiences about how they just could not get any normal sleep, one of the two for a very very long time. I wanted sooooo bad to say "Look you gotta try what I did" but that woulda been the wrong thing to do, again, I woulda felt so bad if either of them tried it with
not-so-positive results.
And that is why I was compelled to write this particular post, not just to share my experiences or more details from my cancer period - but because I cannot imagine anyone not being able to sleep normally when there is a POSSIBILITY that something very simple may just do the trick for them. Yeah, sure, I've had many restless nights since those cancer days but when the going-gets-tough, I take the stuff and it works like a charm, like it always has.
Then again, it's not like the friend or his friend would've listened to me anyways. People are still discounting me because I am not 100% open about my HIV+ status, but I cant emphasize this enough to everyone I know here on Facebook and beyond - fictional name or not, I am real and my experiences are real, it doesnt make me count any less as a HIV+ individual or a human being. I wouldn't be writing one single word if it wasn't the truth and didn't come straight from my heart. I mean it. Thanks for reading everyone.
Tuesday, May 25, 2010
Three Strikes And You're Out? Nope - Tuesday, May 25, 2010
On three seperate occassions I almost didnt make it through the cancer period but am so thankful I did. Life is so precious, I just wish we didnt always have to learn that the hard way.
The 1st time happened in between chemo cycles #1 and #2. I had woken up in the morning to take my usual morning pee and about 5 seconds into it, something musta happened because I remember waking up in a hospital room with a giant bandage all over my head. Apparently my blood pressure had dropped so rapidly that I passed out, hit my head on toilet, which in turn gave me a major concussion! Trust me, only me, only me. If that's what a blackout is called, they arent any fun!
The 2nd time took place one day during chemo cycle #2. I remember them telling me that becoming diabetic was a possibe side effect of the chemo, which I never thought anything of since my glucose levels have been normal for most of my life. Well about half-way into that days chemo, one of the oncology nurses was doing my vitals, and I was only feeling sleepy at the time, no big deal - and suddenly she yelled "OMG! We gotta get this one over to ER pronto!!" and I said - and I didnt mean to be bitchy, I really didnt - "Are you fucken kidding me?? I'm half-dead already, what the hell are you talking about???"
The glucose levels were not at 300, nor 400 or 500; but, at 695! And omg, this giant rush of people was hovering all over me asking if I was okay and I just said I was sleepy and you all need to get a hold of yourselves!
So I ended up staying that particular week in the hospital - chemo as usual and at night instead of getting to go home they shipped me upstairs, then back down in the morning, back up at night and so on.
The first night was the most intense, but for me, in a funny yet sarcastic kind of way. As soon as they admitted me to a hospital room all these people came rushing in - cardiologist, diabetes educator, hospital social worker and 2 individuals that I never in a million years expected to see - a Catholic Priest and a Rabbi! At that time my Mom and one of my sisters was there, so I looked at them standing there, then at my sister, who said "Don't you dare" and I said to her "Hey if I'm fucking dying, might as well go out with a bang!" so she told both gentleman to ignore any irrational behavior on my part! I was laughing at the time as well, I just could not stop laughing incessently!! An anxiety release perhaps...?
So all I said was this "Look, I dont know what you two gentlemen are doing here because I do not belong to any particular organized religion. But if I am dying and leaving this earth, the last thing I want is some holy man standing over this soon-to-be-carcass!" The Rabbi actually laughed, as was I the entire time, and politely excused himself though I did thank him for his concern. As for the Catholic Priest, he was persistent and said "Well, dont you want your last rites read to you??" and I looked him straight in the face and said "Would you like to hear yours right now??" and I stared him down till he left that hospital room - I think it was a look that neither of us will ever forget.
The 3rd time was in-between chemo cycles #2 and #3...they were doing their usual ct scan check on me when a technician spotted something and set off some kind of alarm in the room and before you knew it a bevy of nurses and techs were heading me over to ER - they had found a small blood clot near the surgery area and it was moving at a rapid rate. So I spent about a week and a half in the hospital that time but if you were add up all the time I practically lived at that place it would equal exactly 4 months of my life.
Oh and during this last major scare (they ended up putting in a screen or net or whatever they call it in my groin to prevent it from ever happening again, which it didnt)all I remember is being very very sleepy a lot of the time. I was out of it during those chemo cycles, a true basket case some of the time.
I'm losing my steam on writing right now so gonna call it quits for a bit. My next post is gonna be about Benedryl and it concerns not just folks facing cancer, but us Hiv'ers as well as anyone dealing with a major disease. Thanks for reading everyone.
The 1st time happened in between chemo cycles #1 and #2. I had woken up in the morning to take my usual morning pee and about 5 seconds into it, something musta happened because I remember waking up in a hospital room with a giant bandage all over my head. Apparently my blood pressure had dropped so rapidly that I passed out, hit my head on toilet, which in turn gave me a major concussion! Trust me, only me, only me. If that's what a blackout is called, they arent any fun!
The 2nd time took place one day during chemo cycle #2. I remember them telling me that becoming diabetic was a possibe side effect of the chemo, which I never thought anything of since my glucose levels have been normal for most of my life. Well about half-way into that days chemo, one of the oncology nurses was doing my vitals, and I was only feeling sleepy at the time, no big deal - and suddenly she yelled "OMG! We gotta get this one over to ER pronto!!" and I said - and I didnt mean to be bitchy, I really didnt - "Are you fucken kidding me?? I'm half-dead already, what the hell are you talking about???"
The glucose levels were not at 300, nor 400 or 500; but, at 695! And omg, this giant rush of people was hovering all over me asking if I was okay and I just said I was sleepy and you all need to get a hold of yourselves!
So I ended up staying that particular week in the hospital - chemo as usual and at night instead of getting to go home they shipped me upstairs, then back down in the morning, back up at night and so on.
The first night was the most intense, but for me, in a funny yet sarcastic kind of way. As soon as they admitted me to a hospital room all these people came rushing in - cardiologist, diabetes educator, hospital social worker and 2 individuals that I never in a million years expected to see - a Catholic Priest and a Rabbi! At that time my Mom and one of my sisters was there, so I looked at them standing there, then at my sister, who said "Don't you dare" and I said to her "Hey if I'm fucking dying, might as well go out with a bang!" so she told both gentleman to ignore any irrational behavior on my part! I was laughing at the time as well, I just could not stop laughing incessently!! An anxiety release perhaps...?
So all I said was this "Look, I dont know what you two gentlemen are doing here because I do not belong to any particular organized religion. But if I am dying and leaving this earth, the last thing I want is some holy man standing over this soon-to-be-carcass!" The Rabbi actually laughed, as was I the entire time, and politely excused himself though I did thank him for his concern. As for the Catholic Priest, he was persistent and said "Well, dont you want your last rites read to you??" and I looked him straight in the face and said "Would you like to hear yours right now??" and I stared him down till he left that hospital room - I think it was a look that neither of us will ever forget.
The 3rd time was in-between chemo cycles #2 and #3...they were doing their usual ct scan check on me when a technician spotted something and set off some kind of alarm in the room and before you knew it a bevy of nurses and techs were heading me over to ER - they had found a small blood clot near the surgery area and it was moving at a rapid rate. So I spent about a week and a half in the hospital that time but if you were add up all the time I practically lived at that place it would equal exactly 4 months of my life.
Oh and during this last major scare (they ended up putting in a screen or net or whatever they call it in my groin to prevent it from ever happening again, which it didnt)all I remember is being very very sleepy a lot of the time. I was out of it during those chemo cycles, a true basket case some of the time.
I'm losing my steam on writing right now so gonna call it quits for a bit. My next post is gonna be about Benedryl and it concerns not just folks facing cancer, but us Hiv'ers as well as anyone dealing with a major disease. Thanks for reading everyone.
Ghetto Crowns - Tuesday, May 25, 2010
Yeah, increments are better and easier to read. The last thing I want any of you to feel is weighted down, that sorta defeats the purpose of sharing my experiences with others.
Ghetto Crowns. I wore tons of the kewlest bandanas back then cause as you may recall from a previous posting, my hair fell out twice during the chemo period. I thought I was making those bandana caps right but after the 1st week I was almost in tears from the itching and abrasion that the slipping of those caps caused. They were made out of 100% cotton so I couldnt understand what was going on, it frustrated the living hell out of me at that point.
But one night when I stayed up late online - and I wish I could remember her name, but I still cant for the life of me - a black drag queen from the Baltimore, MD area came into my chatroom, Pozland, looking for one of her chat friends and she asked how I was doing, so I told her all about my bandana dilemma and I'll never forget what she told me.
She said "Spice, ooohhh child, youse doing it all wrong! LOL! You white boys sure do know how to fuck up the simple shit in life, don't you??" She made me laugh so hard I almost cried! So she took and explained to me very carefully how to make what she said was a Ghetto Crown. Let me see if I can still remember - you lay it out flat, the hankerchief; fold over in 1 inch increments 3 to 4 times on one end; place on your head and then wrap around and tie in the back. I tried it a few times and finally got it right - and, it worked! No more abrasion, no itching, no more pain.
Like with my little buddy Patrick, I never knew what happened to her (if I ever remember her name I must look for her, she was so nice to me) but I will never forget her and how she helped me out that night.
Ghetto Crowns. I wore tons of the kewlest bandanas back then cause as you may recall from a previous posting, my hair fell out twice during the chemo period. I thought I was making those bandana caps right but after the 1st week I was almost in tears from the itching and abrasion that the slipping of those caps caused. They were made out of 100% cotton so I couldnt understand what was going on, it frustrated the living hell out of me at that point.
But one night when I stayed up late online - and I wish I could remember her name, but I still cant for the life of me - a black drag queen from the Baltimore, MD area came into my chatroom, Pozland, looking for one of her chat friends and she asked how I was doing, so I told her all about my bandana dilemma and I'll never forget what she told me.
She said "Spice, ooohhh child, youse doing it all wrong! LOL! You white boys sure do know how to fuck up the simple shit in life, don't you??" She made me laugh so hard I almost cried! So she took and explained to me very carefully how to make what she said was a Ghetto Crown. Let me see if I can still remember - you lay it out flat, the hankerchief; fold over in 1 inch increments 3 to 4 times on one end; place on your head and then wrap around and tie in the back. I tried it a few times and finally got it right - and, it worked! No more abrasion, no itching, no more pain.
Like with my little buddy Patrick, I never knew what happened to her (if I ever remember her name I must look for her, she was so nice to me) but I will never forget her and how she helped me out that night.
Testicular Cancer - Part 2 - Tuesday, May 25, 2010
My previous posting was the lengthiest blog piece I've ever written but there was so much to say. I do need to make a chronological clarification to prevent any possible confusion among any of my readers.
In my Facebook bio I stated that I have been a cancer survivor since 1998, but that was a mistake - this period of my life took place from mid-January, 1999 until May, 1999 when I was declared cancer-free. But in 1998 I had sort of a tiny cancer scare for my dermatologist at the time (December, 1998) thought a couple of lesions I had were actually melanoma, which thank God they werent!
Nowadays I am doing okay, post-cancer that is. I do have minor infections here-n-there but I was told to expect that for the rest of my life; granted, being HIV+ doesn't help matters but what are you gonna do? You just gotta make the best of it. And, of course, there are the annual checkups/exams. Any time I have a medical problem I immerse myself in reading books, latest medical journal articles, checking out websites, etc., and statistically speaking, IF I ever were to have this again (I pray it never happens again but every cancer survivor will tell you that a re-occurrence is ALWAYS in the back of your mind) it would not hit me again till around the age of 58 or 59. And let's face it, I may not even be here then, none of us knows what the future holds when it comes to anything like that.
Food. Lottsa myths about that, some true, some not true. I was told to never eat any of my favorite foods during the chemo period because I would actually find myself getting sick off of them. I thought that was a banquet of bullshit, but not so. I could not eat ice cream or tuna fish until about 5 to 6 years after the chemo ended. Tuna-fish you ask?? Yes, I'm probaly one of the very few gay men in America who will admit to loving Tuna-fish! Plus it's good for you, Omega-3 fatty acids and all that good stuff...lol
Foods that helped me? Everyone told me ginger-snap cookies were a shoe-in but not so - I can't eat ginger period. I drink ginger-ale and it burns my throat and causes blisters, the same thing with ginger-snap cookies, which naturally I should've taken into consideration before trying! Fruitopia, a type of non-carbonated fruit-punch-like drink company originally owned by the Coca-Cola corporation (I believe), hadda flavor out called Strawberry-Mellon and I practically lived off of that when I was nautious and couldn't eat. Also, Ovaltine - check the vitamin content in that stuff, very healthy stuff - this and the Fruitopia helped, they helped a lot.
Losing weight during chemo? Only IF your body isn't responding well to the steroids. I kept thinking "Here's a plus - shed those few pesky pounds from last Christmas!" - never happened - I actually gained about 20 to 25 pounds by the time all was said-n-done.
Gonna break off here and do 2 more posts.
In my Facebook bio I stated that I have been a cancer survivor since 1998, but that was a mistake - this period of my life took place from mid-January, 1999 until May, 1999 when I was declared cancer-free. But in 1998 I had sort of a tiny cancer scare for my dermatologist at the time (December, 1998) thought a couple of lesions I had were actually melanoma, which thank God they werent!
Nowadays I am doing okay, post-cancer that is. I do have minor infections here-n-there but I was told to expect that for the rest of my life; granted, being HIV+ doesn't help matters but what are you gonna do? You just gotta make the best of it. And, of course, there are the annual checkups/exams. Any time I have a medical problem I immerse myself in reading books, latest medical journal articles, checking out websites, etc., and statistically speaking, IF I ever were to have this again (I pray it never happens again but every cancer survivor will tell you that a re-occurrence is ALWAYS in the back of your mind) it would not hit me again till around the age of 58 or 59. And let's face it, I may not even be here then, none of us knows what the future holds when it comes to anything like that.
Food. Lottsa myths about that, some true, some not true. I was told to never eat any of my favorite foods during the chemo period because I would actually find myself getting sick off of them. I thought that was a banquet of bullshit, but not so. I could not eat ice cream or tuna fish until about 5 to 6 years after the chemo ended. Tuna-fish you ask?? Yes, I'm probaly one of the very few gay men in America who will admit to loving Tuna-fish! Plus it's good for you, Omega-3 fatty acids and all that good stuff...lol
Foods that helped me? Everyone told me ginger-snap cookies were a shoe-in but not so - I can't eat ginger period. I drink ginger-ale and it burns my throat and causes blisters, the same thing with ginger-snap cookies, which naturally I should've taken into consideration before trying! Fruitopia, a type of non-carbonated fruit-punch-like drink company originally owned by the Coca-Cola corporation (I believe), hadda flavor out called Strawberry-Mellon and I practically lived off of that when I was nautious and couldn't eat. Also, Ovaltine - check the vitamin content in that stuff, very healthy stuff - this and the Fruitopia helped, they helped a lot.
Losing weight during chemo? Only IF your body isn't responding well to the steroids. I kept thinking "Here's a plus - shed those few pesky pounds from last Christmas!" - never happened - I actually gained about 20 to 25 pounds by the time all was said-n-done.
Gonna break off here and do 2 more posts.
Testicular Cancer - There, I Said It - Part 1 - May 25, 2010
Yep, I said it and you watch, by saying those 2 words I just lost half the chances of finding that special someone here on Facebook! Oh I too would love to think that people arent that petty but guess what? They ahhhhh Blanche they ahhhh! Maybe I shouldn't be so concerned about that but like most folks I too would like to find that someone special again - and if you saw even half of the hotties that are on my Friends List, Lord, have mercy!! Ah but that's another post, I gotta stay on track here....and all joking aside don't worry guys I'm not gonna be stalking any of you anytime soon - at least for now...it's humor, people, geesh!!!
One other epiloguish note...I wanna try to wrap up my posts on my cancer period so we all can focus on other things, mainly the battle against HIV which all of us do on a daily basis. I will though reserve the right to refer back to my cancer experiences whenever and as much as I like only because it was a very pivotal period in my life and hell, sorry folks, I lived it. So much to tell....
You all know about the accident on my job, which in the long run saved my life. How did it happen and how did it save my life? For all my readers, but especially the male contingent, you may wanna put a pillow on top of your crotch area and push it down a bit before I tell this next part...I was doing some laundry for one of the tenants where I worked at the time and get this - as I was putting the load of sheets into the washer, I noticed something was tugging on them and I thought "What the fuck??" So I yanked with all my might and BAM!!! I had literally pulled the caught sheet corner beneath MY FEET which threw my entire body onto the back of a chair, with the point of impact being MY BALLS!!! YOUUUUCH was the understatement!!! I will never ever forget the pain nor the fact that it was the most clutziest thing I have ever done in my entire life!!! I mean, what are the friggin chances of that happening??
Needless to say, a few of my co-workers heard my scream and raced into the room and off to the ER I went. I'll tell you right now, I am not a jinx and I am not a dumb blonde like I sometimes joke that I am, but the above is living proof of the bad luck I have had throughout my lifetime. Not just because of this one incident, I am truly one of those people that if something bad can happen, via some bizarre twist of fate, it usually does....
The ER and my regular pcp said "Oh dont worry, the swelling will go down, everything will be fine".....well, they both were wrong. Less than 2 weeks after this happened the one testicle that was injured in the accident had grown to the size of a small California grapefruit - yeah, pretty nasty but think of all the sexy stares I use to get whenever I went to the grocery store during those 2 weeks!
So I went to one of Boston's finest urologists for an appointment, a half hour appointment that turned into 4 hours of an emotional roller coaster ride. When I dropped my skivvies and showed him, he said "Oh my God..." and in less than 10
minutes that man ordered the hospital's radiology lab on emergency stats where they proceeded to do the customary CT scans in such cases. After the scans were done they told me to meet him back at his office.
I'll never forget the look on his face - he actually looked like he was gonna start crying - and he said to me "How do you want me to tell you this?" and I looked him right in the face and said "Doctor _____ I have been through so much bullshit in my life the last several years, just lay it on me" and when he told me what he thought I had I actually remained calm, didnt cry and listened to what his ideas were for treatment of the testicular cancer. (Please keep in mind that urologists and oncologists look at cancer of any kind from different ends of the spectrum).
Then he asked me "Is there anyone you want me to call?" I had to think for a couple of minutes because of the shock of it all but then I asked him "Would you call my Mom for me?" and that is when the floodgates broke open and the tears came rushing out like Niagara Falls. I thought to myself "God, first the HIV and now this, how on earth am I gonna tell my Mom this?" BUT, when she picked up the phone, I told him to let me talk to her first, and then he could fill her in on the treatment options and I'm glad I did...
I think it's pretty safe for me to say that none of us are big fans of Death, some of us are even constantly rallying against it, but it was so hard to tell my Mom because I had a little brother who died when he was 3 years old. When people die, the severe pain we can experience is overwhelming but from what I saw my Mother go through in my lifetime, I can truthfully say there is no pain greater than that of a mother losing her child. And you can write it down in gold that I just said that. Say what you will about this, there isnt a person on this planet who can even begin to fathom the crushing velocity and depth of that kind of pain unless they themselves are experiencing it personally or right beside someone who is experiencing it, like I did with my mother.
So I told her about everything the doctor had told me and then he talked with her and over the next several days, after speaking with an entire team of oncologists, we put a game plan into effect (by the way, my case made a bit of medical history at the time but not because of my HIV+ status, I'll fill you in at the end of this post)and here it was...due to the HIV, scrap the lymph node dissection route, stick with an orchiectomy (yep, fancy talk for cutting one of your balls off) followed by 3 cycles of chemo (1 full week of chemo, then 2 weeks off, 1 full week, and so on) and if that didnt work, then radiation too.
Luckily, I was extremely fortunate and didnt have to do radiation for our game plan worked - and I survived. Whew, I better bring this baby in for a landing, otherwise Part 2 will look like a footnote.
Now to finally answer why the accident saved my life. Did you know that in most cases the general rule of thumb when it comes to oncologists making a DEFINITE cancer diagnosis is because these things called tumor markers show up in your bloodstream? Ready for this? There werent any tumor markers in my bloodstream - they never showed up! No shit! And that is why no oncologist could treat me until after a board of review was completed by a team of 6 oncologists.
So then how did we know? We all took a chance, literally. That board of review recommended an MIR scan done of my groin. Since I already knew how bad the situation was I told the radiologists performing the scan, "Look, just tell me what you see, I already know how bad it is and I know you guys arent suppose to legally say anything but you need to tell me." This was one of those times when I didnt need to say a word - as I was laying there, the 3 people performing the test practically went into shock - one even got teary-eyed. They got on the phone with the urologist and he drove all the way down to where I was at to take a look as well. I saw the photos too (and yes, once again I was bawling, no Restasis for me baby....).
It was indeed the size of a small California grapefruit, but the inside of it was like nature gone loco. They showed me the different layers (you guessed it, testicles arent suppose to have layers, as usual, just my luck!)and said they had never seen anything like it before. Their exact words were that it was like there was a gigantic implosion inside my groin - Lord knows thats what it felt like when my groin hit the back of that chair! - and THAT is how they were almost 100% certain it was testicular cancer. I wont say my case was the only one of its kind because I dont know that, but I do know that in Boston's medical oncology history it was one of the first cases where a medical team had to take a chance and remove the testicle BEFORE knowing it was actually cancerous. Thank God they did, because they saved my life.
I know, I need some coffee right now too. In closing I want to say 2 more things. First, everything on this planet happens for a reason, I am truly blessed to be living proof of that. Second, had I not been in Boston when this all happened I would not be here today sharing this intense experience with you all. I'm serious. I know there are good doctors everywhere but when it comes to Boston and the word cancer, their attitude is "Okay, we found it, let's fight this" not the way they think about it in Michigan which is "Oh, you have cancer, I'm so sorry, you know you're going to die dont you?" And to think my relatives wanted me to go back there to fight this - thank God I stood strong and said "No fucken way, this is my battle, not yours." And folks wonder why I am so down on Michigan all the time? It's no friggin wonder, is it, really? Thank you for reading - I mean it.
One other epiloguish note...I wanna try to wrap up my posts on my cancer period so we all can focus on other things, mainly the battle against HIV which all of us do on a daily basis. I will though reserve the right to refer back to my cancer experiences whenever and as much as I like only because it was a very pivotal period in my life and hell, sorry folks, I lived it. So much to tell....
You all know about the accident on my job, which in the long run saved my life. How did it happen and how did it save my life? For all my readers, but especially the male contingent, you may wanna put a pillow on top of your crotch area and push it down a bit before I tell this next part...I was doing some laundry for one of the tenants where I worked at the time and get this - as I was putting the load of sheets into the washer, I noticed something was tugging on them and I thought "What the fuck??" So I yanked with all my might and BAM!!! I had literally pulled the caught sheet corner beneath MY FEET which threw my entire body onto the back of a chair, with the point of impact being MY BALLS!!! YOUUUUCH was the understatement!!! I will never ever forget the pain nor the fact that it was the most clutziest thing I have ever done in my entire life!!! I mean, what are the friggin chances of that happening??
Needless to say, a few of my co-workers heard my scream and raced into the room and off to the ER I went. I'll tell you right now, I am not a jinx and I am not a dumb blonde like I sometimes joke that I am, but the above is living proof of the bad luck I have had throughout my lifetime. Not just because of this one incident, I am truly one of those people that if something bad can happen, via some bizarre twist of fate, it usually does....
The ER and my regular pcp said "Oh dont worry, the swelling will go down, everything will be fine".....well, they both were wrong. Less than 2 weeks after this happened the one testicle that was injured in the accident had grown to the size of a small California grapefruit - yeah, pretty nasty but think of all the sexy stares I use to get whenever I went to the grocery store during those 2 weeks!
So I went to one of Boston's finest urologists for an appointment, a half hour appointment that turned into 4 hours of an emotional roller coaster ride. When I dropped my skivvies and showed him, he said "Oh my God..." and in less than 10
minutes that man ordered the hospital's radiology lab on emergency stats where they proceeded to do the customary CT scans in such cases. After the scans were done they told me to meet him back at his office.
I'll never forget the look on his face - he actually looked like he was gonna start crying - and he said to me "How do you want me to tell you this?" and I looked him right in the face and said "Doctor _____ I have been through so much bullshit in my life the last several years, just lay it on me" and when he told me what he thought I had I actually remained calm, didnt cry and listened to what his ideas were for treatment of the testicular cancer. (Please keep in mind that urologists and oncologists look at cancer of any kind from different ends of the spectrum).
Then he asked me "Is there anyone you want me to call?" I had to think for a couple of minutes because of the shock of it all but then I asked him "Would you call my Mom for me?" and that is when the floodgates broke open and the tears came rushing out like Niagara Falls. I thought to myself "God, first the HIV and now this, how on earth am I gonna tell my Mom this?" BUT, when she picked up the phone, I told him to let me talk to her first, and then he could fill her in on the treatment options and I'm glad I did...
I think it's pretty safe for me to say that none of us are big fans of Death, some of us are even constantly rallying against it, but it was so hard to tell my Mom because I had a little brother who died when he was 3 years old. When people die, the severe pain we can experience is overwhelming but from what I saw my Mother go through in my lifetime, I can truthfully say there is no pain greater than that of a mother losing her child. And you can write it down in gold that I just said that. Say what you will about this, there isnt a person on this planet who can even begin to fathom the crushing velocity and depth of that kind of pain unless they themselves are experiencing it personally or right beside someone who is experiencing it, like I did with my mother.
So I told her about everything the doctor had told me and then he talked with her and over the next several days, after speaking with an entire team of oncologists, we put a game plan into effect (by the way, my case made a bit of medical history at the time but not because of my HIV+ status, I'll fill you in at the end of this post)and here it was...due to the HIV, scrap the lymph node dissection route, stick with an orchiectomy (yep, fancy talk for cutting one of your balls off) followed by 3 cycles of chemo (1 full week of chemo, then 2 weeks off, 1 full week, and so on) and if that didnt work, then radiation too.
Luckily, I was extremely fortunate and didnt have to do radiation for our game plan worked - and I survived. Whew, I better bring this baby in for a landing, otherwise Part 2 will look like a footnote.
Now to finally answer why the accident saved my life. Did you know that in most cases the general rule of thumb when it comes to oncologists making a DEFINITE cancer diagnosis is because these things called tumor markers show up in your bloodstream? Ready for this? There werent any tumor markers in my bloodstream - they never showed up! No shit! And that is why no oncologist could treat me until after a board of review was completed by a team of 6 oncologists.
So then how did we know? We all took a chance, literally. That board of review recommended an MIR scan done of my groin. Since I already knew how bad the situation was I told the radiologists performing the scan, "Look, just tell me what you see, I already know how bad it is and I know you guys arent suppose to legally say anything but you need to tell me." This was one of those times when I didnt need to say a word - as I was laying there, the 3 people performing the test practically went into shock - one even got teary-eyed. They got on the phone with the urologist and he drove all the way down to where I was at to take a look as well. I saw the photos too (and yes, once again I was bawling, no Restasis for me baby....).
It was indeed the size of a small California grapefruit, but the inside of it was like nature gone loco. They showed me the different layers (you guessed it, testicles arent suppose to have layers, as usual, just my luck!)and said they had never seen anything like it before. Their exact words were that it was like there was a gigantic implosion inside my groin - Lord knows thats what it felt like when my groin hit the back of that chair! - and THAT is how they were almost 100% certain it was testicular cancer. I wont say my case was the only one of its kind because I dont know that, but I do know that in Boston's medical oncology history it was one of the first cases where a medical team had to take a chance and remove the testicle BEFORE knowing it was actually cancerous. Thank God they did, because they saved my life.
I know, I need some coffee right now too. In closing I want to say 2 more things. First, everything on this planet happens for a reason, I am truly blessed to be living proof of that. Second, had I not been in Boston when this all happened I would not be here today sharing this intense experience with you all. I'm serious. I know there are good doctors everywhere but when it comes to Boston and the word cancer, their attitude is "Okay, we found it, let's fight this" not the way they think about it in Michigan which is "Oh, you have cancer, I'm so sorry, you know you're going to die dont you?" And to think my relatives wanted me to go back there to fight this - thank God I stood strong and said "No fucken way, this is my battle, not yours." And folks wonder why I am so down on Michigan all the time? It's no friggin wonder, is it, really? Thank you for reading - I mean it.
Saturday, May 22, 2010
The Guy From Atlanta - Saturday, May 22, 2010
In my early days on the internet (around 1995 to 96) a good-sized group of my friends and myself would make it a point to meet nightly online (whenever we could that is) at my old chatroom "Pozland." We'd hash out how our days had been, bitch about our problems, crack jokes about the irony of our various situations, and in most cases lend a shoulder of comfort. There were so many people that use to come there to chat and I met some pretty amazing people in those days. But there was one who stood out above the rest.
I don't even remember his internet moniker but I do remember that his first name was Patrick, he was 26 or 27 at the time, he had been diagnosed Hiv+ 2 years prior and was a graphic artist. We were each other's sidekicks when it came to cracking jokes and it was nothing for he and I to stay up all night chatting and be the ones to "close" the chatroom late at night, sometimes as late as 3 to 4 a.m. in the morning (I always was a night-owl!).
One night when he entered the chatroom he private messaged me that he had sent me something in an email. Naturally, I just thought it was another piece of porn (back then I had the hots for this one porn star, Dino DiMarco - wonder whatever happened to him?) but when I opened it, I literally busted a gut laughing!
He had taken and made this large caricature of a kitchen spicerack - you know, the tradional two-tiered wooden kind that was popular back in the 70's and/or 80's - and on each of the spice bottles was written the name of a spice and some type of happy or frowning face; BUT, located between the spices Fennel and Marjoram was an itty bitty, teeny-tiny version of me, with my head slumped to one side and little z's coming out of my little mouth!!! It was the MOST FUNNIEST caricature I have ever ever seen in my entire life and I will never forget it for as long as I live! The caption above it was "Time For All Good Spices To Call It A Night!" and he signed it, "Love, Lillies & Lilacs, Patrick."
I know some of you are probaly thinking "Boy, the meds are really doing a number on Spice arent they??" and perhaps some of you may not see any humor in this whatsoever, but the memory of that cariacture was actually one of the funniest things that helped pull me through what I call my cancer period. Whenever I felt like crying from the pain of those oncology nurses switching iv's from arm to arm, or just felt downright lousy from what I was going through, the memory of that caricature made me smile and laugh all over again. I remember one nurse at the clinic use to tell me every morning as she was setting up my free mustard-gas-based iv's (yes, some of those drugs are the equivalent of the same exact garbage that killed people in WW I)"Focus on something hilarious when I put these in." Well, I did just that - and I have my friend Patrick to thank for that.
It's funny how sometimes the most simplest things, the things most folks might take for granted, can cause some of the biggest and most positive impacts in our lives.
Back then, as I'm sure it's this way now too, when you didnt pay your monthly internet bill, depending on who your server was, those accounts were automatically shut-down and their files discarded. When I got out of the hospital, my files were gone, my address books erased, etc., and not only did I lose that email with the caricature in it but naturally my only contact with Patrick as well. It was like my entire internet history had vanished, like I hadda rug pulled out from beneath me - and I did. Up until the time I joined Facebook as well as created this blog, you could google my nic and nothing would come up. Perhaps that's still the case, I havent checked it in ages...lol.
I wouldn't even know how to begin looking for Patrick but I do know one thing - by one simple, unselfish gesture, he impacted my life more than he could ever know. I just pray he's still alive and hanging in there. I miss my Friend and I will never forget him. And I know the chances of this happening are about as probable as the TITANIC being raised and put back into service, but if you're still out there, contact me. Either way, thank you Patrick for making a difference.
I don't even remember his internet moniker but I do remember that his first name was Patrick, he was 26 or 27 at the time, he had been diagnosed Hiv+ 2 years prior and was a graphic artist. We were each other's sidekicks when it came to cracking jokes and it was nothing for he and I to stay up all night chatting and be the ones to "close" the chatroom late at night, sometimes as late as 3 to 4 a.m. in the morning (I always was a night-owl!).
One night when he entered the chatroom he private messaged me that he had sent me something in an email. Naturally, I just thought it was another piece of porn (back then I had the hots for this one porn star, Dino DiMarco - wonder whatever happened to him?) but when I opened it, I literally busted a gut laughing!
He had taken and made this large caricature of a kitchen spicerack - you know, the tradional two-tiered wooden kind that was popular back in the 70's and/or 80's - and on each of the spice bottles was written the name of a spice and some type of happy or frowning face; BUT, located between the spices Fennel and Marjoram was an itty bitty, teeny-tiny version of me, with my head slumped to one side and little z's coming out of my little mouth!!! It was the MOST FUNNIEST caricature I have ever ever seen in my entire life and I will never forget it for as long as I live! The caption above it was "Time For All Good Spices To Call It A Night!" and he signed it, "Love, Lillies & Lilacs, Patrick."
I know some of you are probaly thinking "Boy, the meds are really doing a number on Spice arent they??" and perhaps some of you may not see any humor in this whatsoever, but the memory of that cariacture was actually one of the funniest things that helped pull me through what I call my cancer period. Whenever I felt like crying from the pain of those oncology nurses switching iv's from arm to arm, or just felt downright lousy from what I was going through, the memory of that caricature made me smile and laugh all over again. I remember one nurse at the clinic use to tell me every morning as she was setting up my free mustard-gas-based iv's (yes, some of those drugs are the equivalent of the same exact garbage that killed people in WW I)"Focus on something hilarious when I put these in." Well, I did just that - and I have my friend Patrick to thank for that.
It's funny how sometimes the most simplest things, the things most folks might take for granted, can cause some of the biggest and most positive impacts in our lives.
Back then, as I'm sure it's this way now too, when you didnt pay your monthly internet bill, depending on who your server was, those accounts were automatically shut-down and their files discarded. When I got out of the hospital, my files were gone, my address books erased, etc., and not only did I lose that email with the caricature in it but naturally my only contact with Patrick as well. It was like my entire internet history had vanished, like I hadda rug pulled out from beneath me - and I did. Up until the time I joined Facebook as well as created this blog, you could google my nic and nothing would come up. Perhaps that's still the case, I havent checked it in ages...lol.
I wouldn't even know how to begin looking for Patrick but I do know one thing - by one simple, unselfish gesture, he impacted my life more than he could ever know. I just pray he's still alive and hanging in there. I miss my Friend and I will never forget him. And I know the chances of this happening are about as probable as the TITANIC being raised and put back into service, but if you're still out there, contact me. Either way, thank you Patrick for making a difference.
The Jacket - Saturday, May 22, 2010
I'm gonna be jumping around when it comes to the subject material of my posts because now that I am writing I cant seem to stop...lol...I know, frightening isn't it? I should start out this piece with "A long, long time ago..." because that seems the most appropriate for this piece....
Before the cancer journey began I was actually going to begin a process that would have launched me from being an internet activist to a street activist but once again, fate stepped in - those 4 months in the hospital hightailed a few of my intentions and goals. The purpose of this piece? Because for once, fate nor time is going to erase what was originally meant to be. I still want it to become reality, to serve the purpose I intended it for, but this time nothing is gonna take it away from me.
The jacket was to be designed as a simple blue jean jacket with a detachable fleece liner so that it could be worn in all seasons. But the back of it, that was/is to be something else...memory banks dont fail me now.....a large blue and green design in the shape of a giant globe(the entire world) with a giant Red Ribbon(the greatest Hiv/AIDS symbol, at least in my eyes) covering it from top to bottom; a white dove (symbolizing love and hope) placed directly on top of the Red Ribbon, as to perpetuate it holding it in its grip; and, a yellow rose (which symbolizes peace) being held in the white dove's beak. And, above the white dove, my armor in letters "HivSpice." The front of the jacket, on the left upper side, ACT-UP's infamous black circle with pink triangle and white letters, "Silence = Death" in honor of the truth as well as those who have gone on ahead of us. On the right side, the American flag to show my allegiance to freedom and democracy; beneath it, the Star of David, in honor of my ancestors who died in Theriesenstadt.
Whew, I did it, I remembered. Thank you so much God. By the way, no, I am not Jewish, I have been told that if your mother is not Jewish that you then are not Jewish. My roots are but that I was told does not qualify me. Oh well, I still am fascinated by Jewish culture and history and that will have to be good enough for me :) Sorry, back to the jacket...
My theory back then was this - create the jacket and take my position in the frontlines, mainly by signing up with one of the local Hiv/AIDS organizations in the greater Boston area and hitting the streets and getting the word out. I suppose in this age of the internet and world-wide web such a concept would be considered antiquated but I dont care, I do plan to go ahead and do this because raising awareness by speaking face-to-face with others is still the best way to get the message across. Plus, if people can see an Hiv+ individual upfront for themselves maybe they will realize that this disease isn't just about this-or-that group, it is and should be a concern for us all.
And the jacket will be part of my coming-out process as an Hiv'er as well. Its symbology alone will keep me warm and protected, probaly when I will need it the most. Before it was to be created, I ended up in the hospital and when I got out those 4 months later, the man who was to create it had died. He was a great man and a dear friend, God Bless you Rob, I will never forget you.
So there it is, the infamous HivSpice jacket, still waiting to become a reality. In the meantime I will focus on my own personal journey as well as on this summer's major leg surgery next month. I'm gonna survive that and not to sound corny, I will be wearing that jacket proudly - someday. Thanks for reading everyone.
Before the cancer journey began I was actually going to begin a process that would have launched me from being an internet activist to a street activist but once again, fate stepped in - those 4 months in the hospital hightailed a few of my intentions and goals. The purpose of this piece? Because for once, fate nor time is going to erase what was originally meant to be. I still want it to become reality, to serve the purpose I intended it for, but this time nothing is gonna take it away from me.
The jacket was to be designed as a simple blue jean jacket with a detachable fleece liner so that it could be worn in all seasons. But the back of it, that was/is to be something else...memory banks dont fail me now.....a large blue and green design in the shape of a giant globe(the entire world) with a giant Red Ribbon(the greatest Hiv/AIDS symbol, at least in my eyes) covering it from top to bottom; a white dove (symbolizing love and hope) placed directly on top of the Red Ribbon, as to perpetuate it holding it in its grip; and, a yellow rose (which symbolizes peace) being held in the white dove's beak. And, above the white dove, my armor in letters "HivSpice." The front of the jacket, on the left upper side, ACT-UP's infamous black circle with pink triangle and white letters, "Silence = Death" in honor of the truth as well as those who have gone on ahead of us. On the right side, the American flag to show my allegiance to freedom and democracy; beneath it, the Star of David, in honor of my ancestors who died in Theriesenstadt.
Whew, I did it, I remembered. Thank you so much God. By the way, no, I am not Jewish, I have been told that if your mother is not Jewish that you then are not Jewish. My roots are but that I was told does not qualify me. Oh well, I still am fascinated by Jewish culture and history and that will have to be good enough for me :) Sorry, back to the jacket...
My theory back then was this - create the jacket and take my position in the frontlines, mainly by signing up with one of the local Hiv/AIDS organizations in the greater Boston area and hitting the streets and getting the word out. I suppose in this age of the internet and world-wide web such a concept would be considered antiquated but I dont care, I do plan to go ahead and do this because raising awareness by speaking face-to-face with others is still the best way to get the message across. Plus, if people can see an Hiv+ individual upfront for themselves maybe they will realize that this disease isn't just about this-or-that group, it is and should be a concern for us all.
And the jacket will be part of my coming-out process as an Hiv'er as well. Its symbology alone will keep me warm and protected, probaly when I will need it the most. Before it was to be created, I ended up in the hospital and when I got out those 4 months later, the man who was to create it had died. He was a great man and a dear friend, God Bless you Rob, I will never forget you.
So there it is, the infamous HivSpice jacket, still waiting to become a reality. In the meantime I will focus on my own personal journey as well as on this summer's major leg surgery next month. I'm gonna survive that and not to sound corny, I will be wearing that jacket proudly - someday. Thanks for reading everyone.
Friday, May 21, 2010
Special Note About My Posts.....Friday, May 21, 2010
I just wanted to say that when I write about my thoughts and experiences I am not looking for pity, sympathy, attention, a nomination for martyrdom, etc., etc., I'm just relaying how I feel about things in the hopes that it will not only bring awareness to certain issues but also help someone else not feel alone in what they are dealing with. Actually, yes, I am seeking attention but ONLY in regards to the battle against Hiv/AIDS and in my particular case, cancer as well. Just as with Hiv/AIDS, the same rules apply to cancer of any kind - get tested/prescreened for any cancer(s) that your medical professional advises - it could save your life, as well as possibly prolong it. Take care everyone :)
Wednesday, May 19, 2010
Probaly One Of The Hardest Parts About The Cancer...
...was the brief time period between the surgery and my 1st cycle of chemo (5 days a week, Monday thru Friday, usually 8 to 9 a.m. to 5 p.m.). The surgey was done on an outpatient basis and I was so out of it from the anesthesia that when I got home that afternoon I crashed and didn't wake up till the next morning. That is a morning I will never forget.
I woke up to go to the bathroom and when I was done I looked down at the staples pierced into my body, was overwhelmed with a quick flash of the Frankenstein(1931) movie that rushed through my mind, and then I started to cry and I cried so hard that I leaned against the bathroom wall and slid down to the floor and just bawled for about a good hour.
In the middle of all the sobbing, I remember mumbling "Jack, look what they did, look what has happened" and for what seemed like an eternity, but was actually only a few minutes, I remember being so goddamned angry at him for dying on me all over again. In those minutes I grew so resentful of him and the frustrations of the past - the feeding tubes that tangled or never worked right, emptying those damned bed pans, waiting for the medical supply place to retrieve the medical bed after he died. And I kept thinking over and over again "Who's gonna take care of me now?" I felt so alone, so scared. But as the crying lessened I remembered how when I use to lose my temper (me? get riled up? nahhhh...) he always use to say to me "Don't sweat it, it'll make you stronger for the next thing in your path" - and he was right. So I stopped feeling sorry for myself, grabbed the towel rack above my head, pulled myself up and started facing life again.
I don't smoke and I don't drink but after writing and re-reading that (remember, this baring your soul in written word is a new thing for me) boy, I sure could go for a half a pack of Carltons and an ice cold Coke right about now...
No part of battling any cancer is a joyride and there were other physical/emotional moments during that period of my life - but that one topped them all. I will cover the exact kind of cancer it was in a future posting(most of you have probaly already figured it out), but for everyone out there, both hiv'er and non-hiv'er, if you ever are diagnosed with any form of cancer, listen to what your medical team tells you and do your best to fight as hard as you can and remember to take it one day at a time. For now that's the best advice I can suggest to anyone. Thank you for reading.
I woke up to go to the bathroom and when I was done I looked down at the staples pierced into my body, was overwhelmed with a quick flash of the Frankenstein(1931) movie that rushed through my mind, and then I started to cry and I cried so hard that I leaned against the bathroom wall and slid down to the floor and just bawled for about a good hour.
In the middle of all the sobbing, I remember mumbling "Jack, look what they did, look what has happened" and for what seemed like an eternity, but was actually only a few minutes, I remember being so goddamned angry at him for dying on me all over again. In those minutes I grew so resentful of him and the frustrations of the past - the feeding tubes that tangled or never worked right, emptying those damned bed pans, waiting for the medical supply place to retrieve the medical bed after he died. And I kept thinking over and over again "Who's gonna take care of me now?" I felt so alone, so scared. But as the crying lessened I remembered how when I use to lose my temper (me? get riled up? nahhhh...) he always use to say to me "Don't sweat it, it'll make you stronger for the next thing in your path" - and he was right. So I stopped feeling sorry for myself, grabbed the towel rack above my head, pulled myself up and started facing life again.
I don't smoke and I don't drink but after writing and re-reading that (remember, this baring your soul in written word is a new thing for me) boy, I sure could go for a half a pack of Carltons and an ice cold Coke right about now...
No part of battling any cancer is a joyride and there were other physical/emotional moments during that period of my life - but that one topped them all. I will cover the exact kind of cancer it was in a future posting(most of you have probaly already figured it out), but for everyone out there, both hiv'er and non-hiv'er, if you ever are diagnosed with any form of cancer, listen to what your medical team tells you and do your best to fight as hard as you can and remember to take it one day at a time. For now that's the best advice I can suggest to anyone. Thank you for reading.
Note - Wednesday, May 19, 2010
I decided to add the "Adult Content" warning to my blog because should I decide to write about some of the more graphic angles of my life, such as my battle against cancer, I wouldn't want any children to see the content. Plus this is also a safeguard for me to feel more free to write about anything and everything that is on my mind.
Tuesday, May 18, 2010
Post-Bio Epilogue #2 - May 13th, 2010
Epilogue #2 - Thursday, May 13th, 2010
I've been doing even some more thinking and though I do pride myself on working hard to try and make a difference in the lives of others, I wanna do more than just this internet stuff. I'm not saying a drastic immediate change because like everyone I have health issues (a semi-major surgery coming up this summer which will put me out of commision for several weeks) and other life issues to tend to as well; but, I think in the upcoming months I wanna do what I guess could be called a "cross-over" from internet existence into real life. Years ago I proved my mettle online, maybe it's time for a change, maybe proving it all in person will be a new frontier for me - and I said I wasnt a drama queen? Gotta use my signature "rotflmfghiv+ao!!!" on that one :)
On this note, I wanna give a very hearty "Bravo!" to people everywhere who are helping in the battle against Hiv/AIDS, both Hiv'er and non-Hiv'er alike. When I look at all of the extraordinary people on my Friends list and beyond, it just blows my mind, especially the younger generations - man, you guys & gals are out there in the frontlines doing stuff that us Hiv'ers from the late 80's would never dream of doing! And it's working - you're making a difference! Pardon my language, but I am sooo fucken proud of each and every one of you that is just chokes me up, I mean it (and dont anyone say "Someone please hand Mary a tissue!). Great job, keep up the wonderful work you are doing - I'll be joining your ranks soon enough.
I've been doing even some more thinking and though I do pride myself on working hard to try and make a difference in the lives of others, I wanna do more than just this internet stuff. I'm not saying a drastic immediate change because like everyone I have health issues (a semi-major surgery coming up this summer which will put me out of commision for several weeks) and other life issues to tend to as well; but, I think in the upcoming months I wanna do what I guess could be called a "cross-over" from internet existence into real life. Years ago I proved my mettle online, maybe it's time for a change, maybe proving it all in person will be a new frontier for me - and I said I wasnt a drama queen? Gotta use my signature "rotflmfghiv+ao!!!" on that one :)
On this note, I wanna give a very hearty "Bravo!" to people everywhere who are helping in the battle against Hiv/AIDS, both Hiv'er and non-Hiv'er alike. When I look at all of the extraordinary people on my Friends list and beyond, it just blows my mind, especially the younger generations - man, you guys & gals are out there in the frontlines doing stuff that us Hiv'ers from the late 80's would never dream of doing! And it's working - you're making a difference! Pardon my language, but I am sooo fucken proud of each and every one of you that is just chokes me up, I mean it (and dont anyone say "Someone please hand Mary a tissue!). Great job, keep up the wonderful work you are doing - I'll be joining your ranks soon enough.
Post-Bio Epilogue - May 10th, 2010
The following is an epilogue-type piece that I wrote a few days after I wrote my Bio. Originally I was gonna delete it but I thought about it and decided to keep it as a reality check to remind me - and perhaps even some of you - that no matter how nice you can be to others, there's always gonna be some asshole(s) in the crowd, always..lol
Epilogue - Monday, May 10th, 2010
I'm pretty sure I did the right thing by writing the Bio for my Profile; but, I think what I wanted to accomplish might have worked a bit too well! Any and all questioning has stopped but now it seems folks are actually hesitant to communicate with me. Please don't be. One of the golden rules of life I try to follow is to take care of yourself and then your fellow human beings. We Hiv'ers are all in the same boat and if reaching out to each other to exchange thoughts, ideas, or borrowing a shoulder can make a difference, then consider me there. We all matter, we all make a difference, and whether large or small, we all contribute in one way or another.
With that being said, there is something I have noticed in the days since I wrote the Bio (actually, I noticed it over the last coupla weeks but I guess I was in denial about it) - there are some people out there who refuse to validate that I exist - and that's puttiing it very very politely. I mean, these people won't even be civil to me and why, I may never know, but I have given some thought to this.
I've always been the type of person to shoot straight from the hip and as I've gotten older I've noticed that my tolerance for bullshit, drama, whatever you wanna call it has reached level zero. Normally, I would confront people on such things directly and in a calm, rational way; but, by the same token I wont lie to anyone, my T-cell levels are far more important to me than worrying about any moron(s) who may judge me without knowing me personally.
When I was a kid I use to hear the saying "There's always gonna be someone in the world who doesnt like you without any reason whatsoever." I just never thought I'd come across that in the Hiv/AIDS community, but I was wrong. And to those who I address this to, you dont have to worry, I know how you feel, I see the writing on the wall - or in this case with Facebook, the LACK of writiing on the wall. In closing, my sincere hope is that no one makes you feel the way you've made me feel.
Epilogue - Monday, May 10th, 2010
I'm pretty sure I did the right thing by writing the Bio for my Profile; but, I think what I wanted to accomplish might have worked a bit too well! Any and all questioning has stopped but now it seems folks are actually hesitant to communicate with me. Please don't be. One of the golden rules of life I try to follow is to take care of yourself and then your fellow human beings. We Hiv'ers are all in the same boat and if reaching out to each other to exchange thoughts, ideas, or borrowing a shoulder can make a difference, then consider me there. We all matter, we all make a difference, and whether large or small, we all contribute in one way or another.
With that being said, there is something I have noticed in the days since I wrote the Bio (actually, I noticed it over the last coupla weeks but I guess I was in denial about it) - there are some people out there who refuse to validate that I exist - and that's puttiing it very very politely. I mean, these people won't even be civil to me and why, I may never know, but I have given some thought to this.
I've always been the type of person to shoot straight from the hip and as I've gotten older I've noticed that my tolerance for bullshit, drama, whatever you wanna call it has reached level zero. Normally, I would confront people on such things directly and in a calm, rational way; but, by the same token I wont lie to anyone, my T-cell levels are far more important to me than worrying about any moron(s) who may judge me without knowing me personally.
When I was a kid I use to hear the saying "There's always gonna be someone in the world who doesnt like you without any reason whatsoever." I just never thought I'd come across that in the Hiv/AIDS community, but I was wrong. And to those who I address this to, you dont have to worry, I know how you feel, I see the writing on the wall - or in this case with Facebook, the LACK of writiing on the wall. In closing, my sincere hope is that no one makes you feel the way you've made me feel.
My Original Facebook Bio Section (May 7, 2010)
Since this blog is something new to both me and any future readers, I thought I would include my original biography that I wrote on my Facebook account...here it is...... I really really did not wanna do this - post anything personal about myself on Facebook - especially since some members of the media who use to harass me years ago are now crawling out of the woodwork all over again and wanting to inquisition me about my past. BUT, in the last 3 weeks there has been speculation concerning the validity of my person as well as my name - HivSpice - a name that I have not only earned the right to call myself but also a name I will defend until I'm six feet under. Pay close attention.
1st...I am an HIV+ gay male and have been living with this disease since August, 1989. I contracted the disease from my lover ( I will not reveal his name, I protected him in life and I will do so in death as well) who died in my arms in October, 1989. Death is a part of life, I know this and I accept this, and I have gone on with my life, but no 24 year old should have to go through what I went through back then. And, with all the medical advances and continued research we have nowadays, hopefully somehow scenarioes like what I went through will become a thing of the past. Remember people, Hope is something no one or no thing can ever ever take away from us.
In addition to this, in late 1998 I had an accident on my job that later saved my life. I was diagnosed with cancer and I wont say on here what kind but let me tell you this much - I had all 3 kinds of it all at once and what was suppose to be one major surgery and 3 rounds of chemo ended up turning into a 4 month hospital stay. Am thankful and extremely fortunate to be both an HIV+ survivor, as well as a cancer survivor. Looking back I can find humor in it - ya know how people usually lose their hair from chemo? Wouldnt you know it, I lost my hair TWICE from chemo!
2nd...no, HivSpice is NOT the missing Spice Girl! Where people come up with this crap I wll never know. I dont drink (I'm literally allergic to alcohol, seriously) but when I heard that, had there been a shot glass of whiskey laying around I mighta just tried it! The Spice Girls have nothing to do with this name (though if it pans out I would like to produce an Hiv/AIDS educational video using an Hiv-friendly version of "Wannabe.") The name was created by one of those brainstorms that writers talk about - I was sitting in my apartment during one of those infamous hot-n-humid Boston summer nights and boom - put Hiv and Spice together and there you have it. Real exciting, heh?
3rd, I have been what could be called, for lack of a better description, an internet based Hiv/AIDS Activist since the mid 1990's onward and I intend to continue to do this for as long as I possibly can. Eventually I will step full-force into the frontlines like so many others have but due to my current employment situation and again, as well as my past associations with certain people, I'm sort of in limbo right now. I hope everyone who reads this will somehow understand and respect my decision. If I end up back in the publics eye, it's not gonna be because "OMG!!! He was so-and-so's lover" or "This-n-that-one's confidante" - everything from here on out will be because I earned it fair-n-square.
Damn, guess when the floodgates open they really rush in dont they? So there you have it, my story in its entirety for the most part. I hope that I've shared enough of myself to give you an idea of who I am and what I am all about. If anyone chooses to further question my integrity please feel free to message me at FB and I will be more than happy to discuss it with you; BUT, there's a catch - you better be damn sure you are who you say you are.
Oh, one more thing - when a gay man transforms himself into a drag queen he's not just playing a role, he is displaying an extension of his inner self, his inner spirit, his inner psyche - yet another reason for creating HivSpice - he is an extention of my inner spirit, it's that plain and simple. Enough said.
1st...I am an HIV+ gay male and have been living with this disease since August, 1989. I contracted the disease from my lover ( I will not reveal his name, I protected him in life and I will do so in death as well) who died in my arms in October, 1989. Death is a part of life, I know this and I accept this, and I have gone on with my life, but no 24 year old should have to go through what I went through back then. And, with all the medical advances and continued research we have nowadays, hopefully somehow scenarioes like what I went through will become a thing of the past. Remember people, Hope is something no one or no thing can ever ever take away from us.
In addition to this, in late 1998 I had an accident on my job that later saved my life. I was diagnosed with cancer and I wont say on here what kind but let me tell you this much - I had all 3 kinds of it all at once and what was suppose to be one major surgery and 3 rounds of chemo ended up turning into a 4 month hospital stay. Am thankful and extremely fortunate to be both an HIV+ survivor, as well as a cancer survivor. Looking back I can find humor in it - ya know how people usually lose their hair from chemo? Wouldnt you know it, I lost my hair TWICE from chemo!
2nd...no, HivSpice is NOT the missing Spice Girl! Where people come up with this crap I wll never know. I dont drink (I'm literally allergic to alcohol, seriously) but when I heard that, had there been a shot glass of whiskey laying around I mighta just tried it! The Spice Girls have nothing to do with this name (though if it pans out I would like to produce an Hiv/AIDS educational video using an Hiv-friendly version of "Wannabe.") The name was created by one of those brainstorms that writers talk about - I was sitting in my apartment during one of those infamous hot-n-humid Boston summer nights and boom - put Hiv and Spice together and there you have it. Real exciting, heh?
3rd, I have been what could be called, for lack of a better description, an internet based Hiv/AIDS Activist since the mid 1990's onward and I intend to continue to do this for as long as I possibly can. Eventually I will step full-force into the frontlines like so many others have but due to my current employment situation and again, as well as my past associations with certain people, I'm sort of in limbo right now. I hope everyone who reads this will somehow understand and respect my decision. If I end up back in the publics eye, it's not gonna be because "OMG!!! He was so-and-so's lover" or "This-n-that-one's confidante" - everything from here on out will be because I earned it fair-n-square.
Damn, guess when the floodgates open they really rush in dont they? So there you have it, my story in its entirety for the most part. I hope that I've shared enough of myself to give you an idea of who I am and what I am all about. If anyone chooses to further question my integrity please feel free to message me at FB and I will be more than happy to discuss it with you; BUT, there's a catch - you better be damn sure you are who you say you are.
Oh, one more thing - when a gay man transforms himself into a drag queen he's not just playing a role, he is displaying an extension of his inner self, his inner spirit, his inner psyche - yet another reason for creating HivSpice - he is an extention of my inner spirit, it's that plain and simple. Enough said.
Maiden Voyage Entry May 18, 2010
I've been talking about doing this for weeks now and it's finally happened - my very own blog. This blog stuff is very new territory for me and it will be a gradual work-in-progress for me, so I will thank everyone for their patience with me ahead of time!
The purpose of this blog is 2-fold: to serve as my personal journal of my own thoughts and experiences - and for commentary on others thoughts and experiences(!); and, to serve as my own chronicle of my current journey from being a semi-closeted HIV+ individual to a totally open, public HIV+ individual.
I dont know how often I will blog each day, it may be once a day, once every other day or maybe even 10 times a day(!). Regardless, I hope it will be a growing experience for myself and an interesting experience to all who may read it.
I dont know how often I will blog each day, it may be once a day, once every other day or maybe even 10 times a day(!). Regardless, I hope it will be a growing experience for myself and an interesting experience to all who may read it.
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