And so we march on.
Been almost a year and a half since I did a real update... I'm not going to post everything that's happened since then, but I AM going to post something that's deep on my mind in a good way... My father and his health.
Background: My father is mostly Cape Verdian (Black and Portuguese), born in Massachusettes, Cape Cod specifically. His first airdrop into Vietnam as a Marine was his 18th birthday, or so he's told me... He's got shrapnel throughout his bullet and his body is scarred to hell. He played a double role in his platoon of .50 cal and radio/scout and was one of the first soldiers to ever lay hands on Agent Orange (when they didn't know the risks - he just had a handkerchief and that was it). He's even had a grenade go off right next to his head and survived, albeit after going deaf for a week and still having slight hearing impairment today. He survived one of the ugliest and most brutal combat arenas America has ever been in, and came out a still a fully-functional and well-adjusted person... My father is a strong man who I have a deep respect for and has always been an example of perseverance to me.
And that was before all this happened.
Back in my senior year of high school (I just started my fourth year of college/university, for those counting) my dad was carrying a television up the stairs for one of his customers. He didn't get along too well with her, but she was an old woman and the tv was going from the basement to one of the upper levels - so naturally he did it without a word. Despite turning 60 this year my father even then was well-built, if a little overweight, and could work manual labor/operate machinery for 10+ hours a day consistently without issue... So when he had considerable chest pain carrying a simple TV, there was some concern.
As it turned out, there were a lot of reasons to be concerned. I believe all of his arteries were 50%+ clogged, some even 99%. He could have had a heart attack at basically any time and we had no idea. He needed heart surgery and, being a Marine and Vietnam veteran, wasn't big on doctors or hospitals in general. Just getting him into the scans was hard because an MRI would kill him and he was afraid to (tunnel/trench warfare memories and the like). Still, he knew he had to and did, eventually. That's when things got worse... Much worse.
Hepatitis C is a blood-to-blood-contact disease he'd contracted from the war - lots of Veterans did, not strange. His strain was the rarest of the four however and, possibly from the Agent Orange and other things, mutated over time into a form of liver cancer.
Background 2: Liver cancer is one of the most common cancers and rarest at the same time. The liver is the 'filter' of the body so, if you have cancer, odds are it'll also end up in your liver. Having liver cancer WITHOUT it coming from somewhere else in your body is very rare however.
In fact, my father's liver cancer was the rarest of the four or five mutations known from Hep C... There were less than a dozen cases of it in Yale's (Yes, the Ivy League college/Med school/Hospital, I live in New Haven) entire medical history. It remains virtually undetectable until the sufferer gets older (50s+), then the onset is sudden and very quick... He'd had it since before I was born and no one had ever known or really been able to.
We were lucky - we managed to find one of the world's top heart surgeons who also had the balls to perform the surgery and put a stint in my father's arteries... even with the blood to blood contact disease. I wasn't involved with that nor did I ever meet the guy, but to this day I am thankful for having the balls to do such a thing - something most wouldn't, doctor or not.
But things got worse, of course, not better. As with most cancers it wasn't curable... but being with how rare this was, there was no real treatment beyond extreme measures. He got liver surgery and had part of it taken out, along with the vast majority of the cancer - nerve-wracking and I remember my mother breaking down and crying as we waited in the hospital, especially when there were some complications with internal bleeding... But everything turned out okay, and he survived the second surgery as well.
We ended up lucking out again and getting him into an expensive (move than a year of college costs per month) and experimental treatment... it was intense, requiring a cocktail of 5-6 kinds of meds, blood thinners he was already on for his stints, and procrit/interferon shots, roughly one every other day that would drain his energy. The treatment started, and his viral load seemed to climb.
Background 3: Viral load is used to measure certain diseases, such as HIV and Hep C. It's something like viral particles per mL of blood or something - I'm not a science person, so don't quote me on that.
My dad's viral load in the first weeks of treatment only worried us more. Before it wasn't very traceable but had surfaced... It was in the double digits, 40 or so I believe. The second week it went up to the thousands. "Okay" we said. "It's known for aggressiveness once it starts, the treatment needs time to work."
The third week his viral load broke into the multi-millions, and he was still tired from the shots, more than they said he'd be. I remember all of us wondering, but never saying, if it was going to work... If my father was going to become a statistic. When the viral load came in the fourth week I can't imagine the breath my mother was holding when they told her the number:
Twelve.
Since then, my father has refused to go off the treatment. It is done in sets of 24 weeks. My father's health not only improved but so did his diet, since he had to get in better shape. By the time this year rolled around, they actually ceased giving him stress tests - between all the meds he was taking and all the physical activity he did, they concluded his heart was stronger than most normal and perfectly healthy hearts with the stint in place, and his own life was a better stress test than what they could give... Impressive, to say the least.
At 72 weeks they asked if he wanted to continue - most people never managed to last through this long because of how rough the treatment was (if they even survived) and, at this point, they didn't know more about what would happen than we did. My father chose to stay on the treatment since it'd worked so far, I think he's on the 92nd or so week now. All was well, he was hanging in there and the costs were alleviated thanks to the fact he was now contributing to what might be medical history...
Until a month or two ago when the scans came back with two/three more tumors and a possible fourth growing. Shit - it wasn't gone after all. Still, he persevered, and they were setting up for a surgery, this time chemo surgery. They'd go in and (as far as I know, with my lack of science knowledge), mini nuke the tumors to spare his liver more pieces being cut out. The mortality rate was 3-7% counting complications - worrisome but no more than the previous surgeries. A bit stressful, but all three of us (my mother, father, and I) all knew what had to be done had to be done - we'd come this far, after all.
Two weeks ago they informed us my father wouldn't go under surgery until at least October. Apparently, due to complications including how few places are allowed to legally make chemo (the chemicals needed, basically), Yale had a shortage of chemo and he'd have to wait... In that time the tumors could have as much as tripled in size though, so we were freaking out. What if it makes him terminal? What if there's no way of saving him a month down the road? Why is my father still suffering from the failings of the medical practitioners and handlers even now, when arguably enough testing would have prevented the complications from Vietnam to begin with?
I started classes again this past week and it was on my mind constantly. Every time a professor said no make up exams except in extreme circumstances, I found myself wondering how to explain the situation... Surely my father's death would count as extreme, but how do I explain the fact it's POSSIBLE but not guaranteed? I would have to give the entire explanation of his cancer five times, that wasn't something I wanted to do.
Today, especially, it weighed on my mind. Walking to class I imagined what I would say if I had to give a eulogy at my father's funeral. I didn't cry or regret so much as ponder what words I could find - how I could portray the greatness of a man who had done so much for me. I've been lucky - I had two wonderful parents who never forced me to think a certain way, only encouraging me to understand and make sense of things on my own. Backing up my judgment calls and intuition because it tended to be correct, teaching me that being wrong is a part of learning, things like that... I don't have any horribly crippling disorders, I've never sustained a serious injury, I wasn't molested or forced to witness a heinous act like murder/rape as a child. My parents are still happily together and married recently - I had a childhood many would dream of and, though it took me years to realize my dad's hardass mentality was a facade for his caring side... he lead by example, always showing respect and making time for people even if he wasn't the biggest fan of them. "Everyone deserves respect until they refuse to give you any" was how he has worked, and it instilled important values on me.
How could I possibly find the words to describe the wonderful impact my father had made? All the wonderful lessons he'd taught me, some even if I didn't appear to want to learn them, and encouraged me to be my own person? It was something that went through my mind for most of the morning, definitely.
I spoke to my mother an hour or two ago - she has worked at Yale in the Prenatal-Genetics department for over a dozen years under Dr. Mahoney (One of the world's foremost Geneticists with a background in Pediatrics, Obstertrics, and Gyneocology, as well as Clinical Affairs and Teaching), is a Union Steward (Union 34; the Yale Unions are famous for how much of an impact they make because of just how disgustingly cheap Yale is, but that's a different story), and is the only person in her department's (and I believe most of Yale's) history to receive a double promotion and have her job description changed for it. She was determined to find a way to get my father into surgery - at a different hospital, maybe even a different state, whatever it took; we knew the risk was too high if he had to wait a month or longer for surgery and how much the tumors could grow in that time.
My mother spoke to everyone she could - doctors, radiologists she'd worked with, other people in her Union, even seeing if she might be able to get it done here at Stony Brook's hospital (where I go to school).
She let me know that she'd managed to locate a shipment of chemo out in Hartford that would be shipped to Yale, and my father will be going under the knife (I assume it's a knife or involves one?) at 10:30 or so tomorrow. He's still at risk for the surgery and something might go wrong... but he'll be doing it at least.
It was relieving to hear and reminded me of how important faith and hope can be. I wanted to write this to get it down, to have it here for me to look at later, and maybe have other people read it if they want to?
I hesitate to call it a miracle, but... well, sometimes it's darkest before the dawn, as they say.
I really do need to do a full update on day, at some point. I will, if I remember to and everything in school goes well and gets down. I promise.
Background: My father is mostly Cape Verdian (Black and Portuguese), born in Massachusettes, Cape Cod specifically. His first airdrop into Vietnam as a Marine was his 18th birthday, or so he's told me... He's got shrapnel throughout his bullet and his body is scarred to hell. He played a double role in his platoon of .50 cal and radio/scout and was one of the first soldiers to ever lay hands on Agent Orange (when they didn't know the risks - he just had a handkerchief and that was it). He's even had a grenade go off right next to his head and survived, albeit after going deaf for a week and still having slight hearing impairment today. He survived one of the ugliest and most brutal combat arenas America has ever been in, and came out a still a fully-functional and well-adjusted person... My father is a strong man who I have a deep respect for and has always been an example of perseverance to me.
And that was before all this happened.
Back in my senior year of high school (I just started my fourth year of college/university, for those counting) my dad was carrying a television up the stairs for one of his customers. He didn't get along too well with her, but she was an old woman and the tv was going from the basement to one of the upper levels - so naturally he did it without a word. Despite turning 60 this year my father even then was well-built, if a little overweight, and could work manual labor/operate machinery for 10+ hours a day consistently without issue... So when he had considerable chest pain carrying a simple TV, there was some concern.
As it turned out, there were a lot of reasons to be concerned. I believe all of his arteries were 50%+ clogged, some even 99%. He could have had a heart attack at basically any time and we had no idea. He needed heart surgery and, being a Marine and Vietnam veteran, wasn't big on doctors or hospitals in general. Just getting him into the scans was hard because an MRI would kill him and he was afraid to (tunnel/trench warfare memories and the like). Still, he knew he had to and did, eventually. That's when things got worse... Much worse.
Hepatitis C is a blood-to-blood-contact disease he'd contracted from the war - lots of Veterans did, not strange. His strain was the rarest of the four however and, possibly from the Agent Orange and other things, mutated over time into a form of liver cancer.
Background 2: Liver cancer is one of the most common cancers and rarest at the same time. The liver is the 'filter' of the body so, if you have cancer, odds are it'll also end up in your liver. Having liver cancer WITHOUT it coming from somewhere else in your body is very rare however.
In fact, my father's liver cancer was the rarest of the four or five mutations known from Hep C... There were less than a dozen cases of it in Yale's (Yes, the Ivy League college/Med school/Hospital, I live in New Haven) entire medical history. It remains virtually undetectable until the sufferer gets older (50s+), then the onset is sudden and very quick... He'd had it since before I was born and no one had ever known or really been able to.
We were lucky - we managed to find one of the world's top heart surgeons who also had the balls to perform the surgery and put a stint in my father's arteries... even with the blood to blood contact disease. I wasn't involved with that nor did I ever meet the guy, but to this day I am thankful for having the balls to do such a thing - something most wouldn't, doctor or not.
But things got worse, of course, not better. As with most cancers it wasn't curable... but being with how rare this was, there was no real treatment beyond extreme measures. He got liver surgery and had part of it taken out, along with the vast majority of the cancer - nerve-wracking and I remember my mother breaking down and crying as we waited in the hospital, especially when there were some complications with internal bleeding... But everything turned out okay, and he survived the second surgery as well.
We ended up lucking out again and getting him into an expensive (move than a year of college costs per month) and experimental treatment... it was intense, requiring a cocktail of 5-6 kinds of meds, blood thinners he was already on for his stints, and procrit/interferon shots, roughly one every other day that would drain his energy. The treatment started, and his viral load seemed to climb.
Background 3: Viral load is used to measure certain diseases, such as HIV and Hep C. It's something like viral particles per mL of blood or something - I'm not a science person, so don't quote me on that.
My dad's viral load in the first weeks of treatment only worried us more. Before it wasn't very traceable but had surfaced... It was in the double digits, 40 or so I believe. The second week it went up to the thousands. "Okay" we said. "It's known for aggressiveness once it starts, the treatment needs time to work."
The third week his viral load broke into the multi-millions, and he was still tired from the shots, more than they said he'd be. I remember all of us wondering, but never saying, if it was going to work... If my father was going to become a statistic. When the viral load came in the fourth week I can't imagine the breath my mother was holding when they told her the number:
Twelve.
Since then, my father has refused to go off the treatment. It is done in sets of 24 weeks. My father's health not only improved but so did his diet, since he had to get in better shape. By the time this year rolled around, they actually ceased giving him stress tests - between all the meds he was taking and all the physical activity he did, they concluded his heart was stronger than most normal and perfectly healthy hearts with the stint in place, and his own life was a better stress test than what they could give... Impressive, to say the least.
At 72 weeks they asked if he wanted to continue - most people never managed to last through this long because of how rough the treatment was (if they even survived) and, at this point, they didn't know more about what would happen than we did. My father chose to stay on the treatment since it'd worked so far, I think he's on the 92nd or so week now. All was well, he was hanging in there and the costs were alleviated thanks to the fact he was now contributing to what might be medical history...
Until a month or two ago when the scans came back with two/three more tumors and a possible fourth growing. Shit - it wasn't gone after all. Still, he persevered, and they were setting up for a surgery, this time chemo surgery. They'd go in and (as far as I know, with my lack of science knowledge), mini nuke the tumors to spare his liver more pieces being cut out. The mortality rate was 3-7% counting complications - worrisome but no more than the previous surgeries. A bit stressful, but all three of us (my mother, father, and I) all knew what had to be done had to be done - we'd come this far, after all.
Two weeks ago they informed us my father wouldn't go under surgery until at least October. Apparently, due to complications including how few places are allowed to legally make chemo (the chemicals needed, basically), Yale had a shortage of chemo and he'd have to wait... In that time the tumors could have as much as tripled in size though, so we were freaking out. What if it makes him terminal? What if there's no way of saving him a month down the road? Why is my father still suffering from the failings of the medical practitioners and handlers even now, when arguably enough testing would have prevented the complications from Vietnam to begin with?
I started classes again this past week and it was on my mind constantly. Every time a professor said no make up exams except in extreme circumstances, I found myself wondering how to explain the situation... Surely my father's death would count as extreme, but how do I explain the fact it's POSSIBLE but not guaranteed? I would have to give the entire explanation of his cancer five times, that wasn't something I wanted to do.
Today, especially, it weighed on my mind. Walking to class I imagined what I would say if I had to give a eulogy at my father's funeral. I didn't cry or regret so much as ponder what words I could find - how I could portray the greatness of a man who had done so much for me. I've been lucky - I had two wonderful parents who never forced me to think a certain way, only encouraging me to understand and make sense of things on my own. Backing up my judgment calls and intuition because it tended to be correct, teaching me that being wrong is a part of learning, things like that... I don't have any horribly crippling disorders, I've never sustained a serious injury, I wasn't molested or forced to witness a heinous act like murder/rape as a child. My parents are still happily together and married recently - I had a childhood many would dream of and, though it took me years to realize my dad's hardass mentality was a facade for his caring side... he lead by example, always showing respect and making time for people even if he wasn't the biggest fan of them. "Everyone deserves respect until they refuse to give you any" was how he has worked, and it instilled important values on me.
How could I possibly find the words to describe the wonderful impact my father had made? All the wonderful lessons he'd taught me, some even if I didn't appear to want to learn them, and encouraged me to be my own person? It was something that went through my mind for most of the morning, definitely.
I spoke to my mother an hour or two ago - she has worked at Yale in the Prenatal-Genetics department for over a dozen years under Dr. Mahoney (One of the world's foremost Geneticists with a background in Pediatrics, Obstertrics, and Gyneocology, as well as Clinical Affairs and Teaching), is a Union Steward (Union 34; the Yale Unions are famous for how much of an impact they make because of just how disgustingly cheap Yale is, but that's a different story), and is the only person in her department's (and I believe most of Yale's) history to receive a double promotion and have her job description changed for it. She was determined to find a way to get my father into surgery - at a different hospital, maybe even a different state, whatever it took; we knew the risk was too high if he had to wait a month or longer for surgery and how much the tumors could grow in that time.
My mother spoke to everyone she could - doctors, radiologists she'd worked with, other people in her Union, even seeing if she might be able to get it done here at Stony Brook's hospital (where I go to school).
She let me know that she'd managed to locate a shipment of chemo out in Hartford that would be shipped to Yale, and my father will be going under the knife (I assume it's a knife or involves one?) at 10:30 or so tomorrow. He's still at risk for the surgery and something might go wrong... but he'll be doing it at least.
It was relieving to hear and reminded me of how important faith and hope can be. I wanted to write this to get it down, to have it here for me to look at later, and maybe have other people read it if they want to?
I hesitate to call it a miracle, but... well, sometimes it's darkest before the dawn, as they say.
I really do need to do a full update on day, at some point. I will, if I remember to and everything in school goes well and gets down. I promise.