What does it mean that I've been working on the same bar of chocolate in my freezer for a month now?
And there's still a piece left.
Have I lost all sense of what's important in the world?
Sheesh.
Monday, July 25, 2011
Thursday, July 14, 2011
Weellllll .....
Tuesday, I met with my liver doctor to discuss the 12 week blood test results.
The short version? The treatment isn't working as we had hoped, but there's still a chance that it could work.
The longer version is this. By this time my Hep C viral load should be undetectable. It's not. After the initial very large drop in viral load, the viral load has refused to go any lower.
The doctor's advice is to wait until week 24 to see if I'm what's known as a "slow responder." If I am a slow responder, my Hep C viral load will have dropped to undetectable by then, and I will be on this treatment for an additional year, with the hope of a "cure."
If I do go on for another year, I will be taking a long, hard look at my empty wallet, trying to figure out how I'm going to pull another $4,000 out of my butt to pay for another year's treatment, and probably shedding a tear or three in frustration. Thank goodness for my insurance, otherwise it would be MUCH worse. Of course, it's also another year of side-effects, none of which are fun.
If I do not become undetectable by week 24, treatment will stop, and I'll continue to live with this disease until something better comes out, I die from liver failure, or I get hit by that proverbial bus. There are two new medications on the market, but they are useless in treating my specific genome. There might be another medication coming out, but if it does, it won't be on the market for a very long time. The silver lining in this scenario is that my energy should return, the side-effects of the drugs will go away, and I can get back to doing all of the things I'm used to doing, but can't do right now.
If my liver continues to deteriorate, there is a possibility of a liver transplant, but that only comes when I get to stage 4 with complications. I am currently at stage 3. The whole transplant issue is complicated by the fact that I'm HIV+. When my friend, Rae, was dying of liver disease and co-infected with HIV, there were only a couple hospitals in the country that did liver transplants on HIV+ folks, and there were very strict standards and many hoops to jump. She wasn't able to get a transplant before she passed away about 5 years ago. Her passing still hits me in the gut when I think about it.
I asked the doctor what the usual progression of the disease was. After he hemmed and hawed a bit, I gave him a stern look, and told him just to give me a ballpark figure. 15-20 years. I've been Hep C+ for at least 15 years, probably closer to 17.
When I first heard all this, I panicked a little bit. I hadn't realized how much I had gotten used to the idea of expecting to live to a ripe old age of 75 to 80 or more. It's funny how hope can insidiously lead to expectations. So, after 21 years of being HIV+, and being treated very successfully for that disease, dealing with the specter of living for only another 5 to 10 years is raising its ugly head again.
It's a bit of an emotional ride, let me tell you.
I remember when I was first diagnosed with HIV, the phrase, "don't worry about it, you could also get hit by a bus tomorrow" was said all the time. Either I said it or the people around me said it. I guess it was a ward against the fear that permeated my life (and many others) at the time. I remember how angry and grief-stricken I was for a long time. I also remember that I didn't handle that stress well. What I remember the most is that I didn't think I would live past 30.
Last Groundhog's Day, I turned 43.
I got through all that, and here I am, still very much alive, productive and living a full-life.
The trick for me is to not give into hopelessness. You gotta pursue your life, right? When it's time to die, it's time to die, before then, it's time to live.
So, I'm going to end by quoting Dolly Parton, and say, you'd "Better Get to Living."
The short version? The treatment isn't working as we had hoped, but there's still a chance that it could work.
The longer version is this. By this time my Hep C viral load should be undetectable. It's not. After the initial very large drop in viral load, the viral load has refused to go any lower.
The doctor's advice is to wait until week 24 to see if I'm what's known as a "slow responder." If I am a slow responder, my Hep C viral load will have dropped to undetectable by then, and I will be on this treatment for an additional year, with the hope of a "cure."
If I do go on for another year, I will be taking a long, hard look at my empty wallet, trying to figure out how I'm going to pull another $4,000 out of my butt to pay for another year's treatment, and probably shedding a tear or three in frustration. Thank goodness for my insurance, otherwise it would be MUCH worse. Of course, it's also another year of side-effects, none of which are fun.
If I do not become undetectable by week 24, treatment will stop, and I'll continue to live with this disease until something better comes out, I die from liver failure, or I get hit by that proverbial bus. There are two new medications on the market, but they are useless in treating my specific genome. There might be another medication coming out, but if it does, it won't be on the market for a very long time. The silver lining in this scenario is that my energy should return, the side-effects of the drugs will go away, and I can get back to doing all of the things I'm used to doing, but can't do right now.
If my liver continues to deteriorate, there is a possibility of a liver transplant, but that only comes when I get to stage 4 with complications. I am currently at stage 3. The whole transplant issue is complicated by the fact that I'm HIV+. When my friend, Rae, was dying of liver disease and co-infected with HIV, there were only a couple hospitals in the country that did liver transplants on HIV+ folks, and there were very strict standards and many hoops to jump. She wasn't able to get a transplant before she passed away about 5 years ago. Her passing still hits me in the gut when I think about it.
I asked the doctor what the usual progression of the disease was. After he hemmed and hawed a bit, I gave him a stern look, and told him just to give me a ballpark figure. 15-20 years. I've been Hep C+ for at least 15 years, probably closer to 17.
When I first heard all this, I panicked a little bit. I hadn't realized how much I had gotten used to the idea of expecting to live to a ripe old age of 75 to 80 or more. It's funny how hope can insidiously lead to expectations. So, after 21 years of being HIV+, and being treated very successfully for that disease, dealing with the specter of living for only another 5 to 10 years is raising its ugly head again.
It's a bit of an emotional ride, let me tell you.
I remember when I was first diagnosed with HIV, the phrase, "don't worry about it, you could also get hit by a bus tomorrow" was said all the time. Either I said it or the people around me said it. I guess it was a ward against the fear that permeated my life (and many others) at the time. I remember how angry and grief-stricken I was for a long time. I also remember that I didn't handle that stress well. What I remember the most is that I didn't think I would live past 30.
Last Groundhog's Day, I turned 43.
I got through all that, and here I am, still very much alive, productive and living a full-life.
The trick for me is to not give into hopelessness. You gotta pursue your life, right? When it's time to die, it's time to die, before then, it's time to live.
So, I'm going to end by quoting Dolly Parton, and say, you'd "Better Get to Living."
Thursday, June 30, 2011
Having a hard time today ...
As of today, I'm halfway through the original treatment time period.
Of course, I still don't know whether the Hep C viral load is undetectable or not. I won't know for another week and a half. If it's not undetectable, there is still the possibility that instead of 6 months, I could be on these meds for 18 months. 18 months is going to be a difficult slog, both physically and financially. However, I'm doing my best not to get caught up too much in what the future is like.
Honestly, today is hard enough. I'm tired, working without backup at my job with several big projects coming due, and I was also informed that the theater company I work with needs volunteers to take down and build a set this weekend.
Fortunately, it's a three day weekend, but honestly, I was hoping to get my own house cleaned up this weekend, and still get some rest. Going home and collapsing on the couch from exhaustion after work doesn't contribute to a lot of dusting and cleaning, and my place is an absolute wreck. Again. How did that happen so quickly?
In predictable news, the cats haven't offered to fill in the house-cleaning slack.
I also had a somewhat depressing conversation with somebody last night that left me reeling.
I'm not used to not having enough energy to do all the things I need and want during the day, and I guess that's the biggest drawback of this medication right now.
I've taken on some new duties at work, which I'm actually excited about, but sometimes my perfectionism steps in and I think I should be learning everything much more quickly, and I start to feel bad about myself.
The cherry on the top is that I'm putting on weight, and I feel like my belly is distended all the time and that my arms and legs look like sticks, which doesn't help my issues with feeling ugly. It actually makes me kinda wanna hide in a closet somewhere.
This is all a long way of me saying that I'm feeling a bit down today, but given my predeliction for bouncing back, I imagine I'll be fine in a bit.
Of course, I still don't know whether the Hep C viral load is undetectable or not. I won't know for another week and a half. If it's not undetectable, there is still the possibility that instead of 6 months, I could be on these meds for 18 months. 18 months is going to be a difficult slog, both physically and financially. However, I'm doing my best not to get caught up too much in what the future is like.
Honestly, today is hard enough. I'm tired, working without backup at my job with several big projects coming due, and I was also informed that the theater company I work with needs volunteers to take down and build a set this weekend.
Fortunately, it's a three day weekend, but honestly, I was hoping to get my own house cleaned up this weekend, and still get some rest. Going home and collapsing on the couch from exhaustion after work doesn't contribute to a lot of dusting and cleaning, and my place is an absolute wreck. Again. How did that happen so quickly?
In predictable news, the cats haven't offered to fill in the house-cleaning slack.
I also had a somewhat depressing conversation with somebody last night that left me reeling.
I'm not used to not having enough energy to do all the things I need and want during the day, and I guess that's the biggest drawback of this medication right now.
I've taken on some new duties at work, which I'm actually excited about, but sometimes my perfectionism steps in and I think I should be learning everything much more quickly, and I start to feel bad about myself.
The cherry on the top is that I'm putting on weight, and I feel like my belly is distended all the time and that my arms and legs look like sticks, which doesn't help my issues with feeling ugly. It actually makes me kinda wanna hide in a closet somewhere.
This is all a long way of me saying that I'm feeling a bit down today, but given my predeliction for bouncing back, I imagine I'll be fine in a bit.
Wednesday, June 15, 2011
An Observation ...
I've noticed the oddest thing about people lately.
There have been a couple of times when my current health status has come up with casual acquaintances. I always say something fairly vague, such as "I'm going through some medical stuff, right now" hoping to minimize the dialog about specifics, but not actually like or reduce the communication to everyday platitudes.
If somebody had given me that information, I would have said, "are you okay?" or "do you need anything?" or something similar.
Interestingly enough, most people haven't responded that way. They've immediately gotten a funny look on their face, followed by a startingly abrubt change in subject.
Don't get me wrong, I'm totally fine with it, but it is quite interesting to see that reaction. Are people frightened of this subject? Is it just a display of etiquette? The old, "shhhhh, don't embarrass anybody?" Uncomfortable? I honestly don't know. But it is fascinating, and maybe the next time I'm working on a character, I'll remember that reaction.
There have been a couple of times when my current health status has come up with casual acquaintances. I always say something fairly vague, such as "I'm going through some medical stuff, right now" hoping to minimize the dialog about specifics, but not actually like or reduce the communication to everyday platitudes.
If somebody had given me that information, I would have said, "are you okay?" or "do you need anything?" or something similar.
Interestingly enough, most people haven't responded that way. They've immediately gotten a funny look on their face, followed by a startingly abrubt change in subject.
Don't get me wrong, I'm totally fine with it, but it is quite interesting to see that reaction. Are people frightened of this subject? Is it just a display of etiquette? The old, "shhhhh, don't embarrass anybody?" Uncomfortable? I honestly don't know. But it is fascinating, and maybe the next time I'm working on a character, I'll remember that reaction.
Wednesday, June 8, 2011
Tired is the new good ...
... or is it "Good is the new tired?
I've been on these meds for about 2 1/2 months now, and everytime somebody asks me how I'm doing, I say, "I'm good, just a bit tired." It occurred to me the other day that just shortening it to "I'm good" would be better.
I'm not a big guy for sharing every detail of how I'm feeling with other folks, especially when it comes to describing my physical state. Honestly, many people don't care or don't know how to handle my personal trials and tribulations or want to. There are of course folks that do care and are willing to listen, but I often feel like I'm taking advantage of their kindness by blabbing about myself, so I try to keep it to a minimum. There's of course, a truth that I'm afraid of being vulnerable with most people. I guess that tops the list as to why I'm single. hahaha.
On the other hand, I'm also a guy that strives towards honesty with others. I'm always torn between telling the absolute truth when somebody asks me how I'm doing, and the socially acceptable answer, "I'm good!" So, I tend to land somewhere in the middle. Hence the, by now, stock answer of "I'm good, just a bit tired."
The fact of the matter is that I'm going to be tired until this treatment is over. The fatigue is constant and, for the most part, bearable. Telling other people that I'm tired doesn't serve a purpose, except to expose a bit of my natural flair for the dramatic, and my neurotic need for attention. I detest the part of me that craves attention. Guess that's one of the reasons I'm an actor; it gives me something of an outlet for that part of me.
From now on, I'm going to do my best to just say, "I'm good" whenever anybody asks me how I'm doing, and leave the rest of it out, unless I'm lying in the hospital hooked up to an IV, and then you can all expect that I will be indulging both my natural flair for the dramatic and that neurotic need for attention.
I've been on these meds for about 2 1/2 months now, and everytime somebody asks me how I'm doing, I say, "I'm good, just a bit tired." It occurred to me the other day that just shortening it to "I'm good" would be better.
I'm not a big guy for sharing every detail of how I'm feeling with other folks, especially when it comes to describing my physical state. Honestly, many people don't care or don't know how to handle my personal trials and tribulations or want to. There are of course folks that do care and are willing to listen, but I often feel like I'm taking advantage of their kindness by blabbing about myself, so I try to keep it to a minimum. There's of course, a truth that I'm afraid of being vulnerable with most people. I guess that tops the list as to why I'm single. hahaha.
On the other hand, I'm also a guy that strives towards honesty with others. I'm always torn between telling the absolute truth when somebody asks me how I'm doing, and the socially acceptable answer, "I'm good!" So, I tend to land somewhere in the middle. Hence the, by now, stock answer of "I'm good, just a bit tired."
The fact of the matter is that I'm going to be tired until this treatment is over. The fatigue is constant and, for the most part, bearable. Telling other people that I'm tired doesn't serve a purpose, except to expose a bit of my natural flair for the dramatic, and my neurotic need for attention. I detest the part of me that craves attention. Guess that's one of the reasons I'm an actor; it gives me something of an outlet for that part of me.
From now on, I'm going to do my best to just say, "I'm good" whenever anybody asks me how I'm doing, and leave the rest of it out, unless I'm lying in the hospital hooked up to an IV, and then you can all expect that I will be indulging both my natural flair for the dramatic and that neurotic need for attention.
Tuesday, June 7, 2011
Grandma ...
My maternal grandmother passed away just before Easter.
I’ve been struggling to find some way to organize into coherency my thoughts and feelings about it.
As an adult, we weren’t particularly close. She was a very strong and opiniated person and so am I, and the combination of our strengths and differing views of the world, along with my inherent and somewhat neurotic need to protect myself from rejection, kept me from cultivating a deeper relationship with her as an adult.
I went up to Fresno to attend her funeral and see the rest of the family, and do my best to support them, and in some small way, say goodbye to the last of my grandparents.
I wasn't quite prepared for the deluge of memories and varied emotions that awaited me.
After the funeral, my mother, step-father and I took a ride out to my grandmother's property in Clovis where I spent a lot of time as a kid with that side of my family: my grandmother, brother, mother, cousins, aunt and uncles. The small memories, things I hadn't thought of in years flooded back so much that I kinda felt I was living simultaneously in the present and the past.
Memories like watching my cousins Tanya, Corky and Dayne walking up high on one side of the land so they were silhouetted against the sky. Small little sense memories like all the frogs and toads that came out in such large numbers that it was impossible to not step on them, as much as I tried. The absence of the sound of traffic that always made me a little uneasy for the first day or so, and the crickets and bullfrogs singing at night. The life lessons my grandmother taught me, sometimes not particularly gently, but effectively. The times when we went with her and my mother on trips in a motor home to various parts of the state. Sundays at Carl's Jr. or Denny's after church. The two memories I have of my grandfather (he passed on when I was very young). When we all laughed. Sleeping on her screened porch always sort of seemed the very definition of summer to me. Of course, there many other memories that will keep me company through the years, like when she taught me how to hop over a fence.
Looking back, I'm not sure, given who the two of us are, we could have had a stronger relationship after I became an adult, but I certainly appreciate her place in my life as a child.
I miss her more than I expected.
Be blessed, Grandma. You'll always have a place in my heart.
I’ve been struggling to find some way to organize into coherency my thoughts and feelings about it.
As an adult, we weren’t particularly close. She was a very strong and opiniated person and so am I, and the combination of our strengths and differing views of the world, along with my inherent and somewhat neurotic need to protect myself from rejection, kept me from cultivating a deeper relationship with her as an adult.
I went up to Fresno to attend her funeral and see the rest of the family, and do my best to support them, and in some small way, say goodbye to the last of my grandparents.
I wasn't quite prepared for the deluge of memories and varied emotions that awaited me.
After the funeral, my mother, step-father and I took a ride out to my grandmother's property in Clovis where I spent a lot of time as a kid with that side of my family: my grandmother, brother, mother, cousins, aunt and uncles. The small memories, things I hadn't thought of in years flooded back so much that I kinda felt I was living simultaneously in the present and the past.
Memories like watching my cousins Tanya, Corky and Dayne walking up high on one side of the land so they were silhouetted against the sky. Small little sense memories like all the frogs and toads that came out in such large numbers that it was impossible to not step on them, as much as I tried. The absence of the sound of traffic that always made me a little uneasy for the first day or so, and the crickets and bullfrogs singing at night. The life lessons my grandmother taught me, sometimes not particularly gently, but effectively. The times when we went with her and my mother on trips in a motor home to various parts of the state. Sundays at Carl's Jr. or Denny's after church. The two memories I have of my grandfather (he passed on when I was very young). When we all laughed. Sleeping on her screened porch always sort of seemed the very definition of summer to me. Of course, there many other memories that will keep me company through the years, like when she taught me how to hop over a fence.
Looking back, I'm not sure, given who the two of us are, we could have had a stronger relationship after I became an adult, but I certainly appreciate her place in my life as a child.
I miss her more than I expected.
Be blessed, Grandma. You'll always have a place in my heart.
Wednesday, June 1, 2011
A tad bit annoyed ...
Yesterday I was a tad bit annoyed with the people who schedule my appointments with my liver doctor.
When I see my liver doctor, he always wants to see me 4 weeks after for a follow-up, which is fine. The nurse always tells me to speak with the receptionist to make the appointment. The receptionist always tells me they don't have an appointment available, so they'll have to fit me in, and that her supervisor will call me. All well and good.
Over the past couple of months, the supervisor will call me, and give me one option for an appointment for three weeks from my last appointment.
It annoys me that after the doctor specically tells me four weeks, the supervisor schedules me for 3 weeks. For all intents and purposes, I'm seeing the doctor a week earlier than he wanted to see me one month, which translates to two weeks earlier the next month, and then three weeks earlier the month after that, etc.
It sort of got to me yesterday, because this next appointment and it's attendant blood test results are going to be the deciding factor about whether I have to do this for 6 months or 18 months. I'm afraid that they're taking the blood tests too early, and that the medication won't have had enough time to work, and then I'll be on this medication, possibly needlessly, for 18 months.
As this treatment goes on, I'll be dealing with more and more side effects, not to mention that if it stretches out to next year, I'm looking at another $4,000 in treatment costs.
Fear and I are not something that go together well, and although I do my best not to lash out (especially after a couple of years of therapy), I realized yesterday that I'm really dreading the next appointment and blood test results.
The good news is that I think I didn't come across as insane, just a little petulant and pedantic, but that's okay. Once I got a chance to breathe, take a look at the situation, and give control of this stuff over to the universe where it belongs, I just shrugged my shoulders, calendared the date and went on about my day.
This whole process is a huge lesson in taking things one day at a time and trusting in something other than myself.
When I see my liver doctor, he always wants to see me 4 weeks after for a follow-up, which is fine. The nurse always tells me to speak with the receptionist to make the appointment. The receptionist always tells me they don't have an appointment available, so they'll have to fit me in, and that her supervisor will call me. All well and good.
Over the past couple of months, the supervisor will call me, and give me one option for an appointment for three weeks from my last appointment.
It annoys me that after the doctor specically tells me four weeks, the supervisor schedules me for 3 weeks. For all intents and purposes, I'm seeing the doctor a week earlier than he wanted to see me one month, which translates to two weeks earlier the next month, and then three weeks earlier the month after that, etc.
It sort of got to me yesterday, because this next appointment and it's attendant blood test results are going to be the deciding factor about whether I have to do this for 6 months or 18 months. I'm afraid that they're taking the blood tests too early, and that the medication won't have had enough time to work, and then I'll be on this medication, possibly needlessly, for 18 months.
As this treatment goes on, I'll be dealing with more and more side effects, not to mention that if it stretches out to next year, I'm looking at another $4,000 in treatment costs.
Fear and I are not something that go together well, and although I do my best not to lash out (especially after a couple of years of therapy), I realized yesterday that I'm really dreading the next appointment and blood test results.
The good news is that I think I didn't come across as insane, just a little petulant and pedantic, but that's okay. Once I got a chance to breathe, take a look at the situation, and give control of this stuff over to the universe where it belongs, I just shrugged my shoulders, calendared the date and went on about my day.
This whole process is a huge lesson in taking things one day at a time and trusting in something other than myself.
Wednesday, May 25, 2011
Medical update ...
I might have to be on this treatment for 72 weeks ... a year and a half.
I didn't know this.
Right now I'm only scheduled to be on treatement for 24 weeks.
I'm almost at the two month marker since I started this treatment. Mostly, I'm handling it pretty well. There was a concern about my red and white blood cell counts, but they're just a little bit low, not a whole bunch. One doctor had prescribed Procrit for me (which is expensive and would require me to self-inject another time once a week ... I'm getting a tad bit tired of needles ... my left thigh looks like a junkie's nightmare). But both doctors ultimately decided that I didn't need it. Thank goodness. I don't quite now how to go about getting all that pre-authorization for medication done. It's easier when the doctor's office spearheads it.
Next month, the results of the blood tests will decide whether I go for just 6 months. The key test is the Hep C viral load. According to blood test paperwork, in February it was 1.3 million. Then it went down to 74,000 a month ago then down again to 34,000 a week ago, then back up to 61,000 this week. If you can remember back to high school math, you'll know what logs are. They measure progress by the reduction of logs. So, there is a difference between 64,000 and 640,000 and 6,400,000, but very little difference between 64,000 and 31,000, if that makes any sense.
The goal is for the viral load to be undetectable by the next time my blood is drawn in 4 weeks. If it is undetectable, I have a really, really good chance of being "cured." If it is not, my chances are much less. However, the doctor said that there are a couple of papers out that indicate that slow responders sometimes do manage to be "cured" if they go for 72 weeks. He basically said that we'll see what happens next month, and make a decision. Apparently, some people give up if they're not at undetectable in three months. Knowing me, I'll probably sign up for the 72 weeks. Because I'm stubborn.
Having said that, damn, that's a long time to feel like you have the flu, not to mention many of the other side effects. One of these days I'm going to upload my notes on the 45 minutes of conversation that I had with the teaching nurse about possible side effects. Some of them are not attractive, to say the least.
However, despite being a little bit scared and a little somber today, I'm keeping my chin up, my hopes high, and putting one foot in front of the other, and doing my damndest to take life one day at a time, and of course, being sure to take the occasional swim in my pool and time to cuddle with my cats.
I didn't know this.
Right now I'm only scheduled to be on treatement for 24 weeks.
I'm almost at the two month marker since I started this treatment. Mostly, I'm handling it pretty well. There was a concern about my red and white blood cell counts, but they're just a little bit low, not a whole bunch. One doctor had prescribed Procrit for me (which is expensive and would require me to self-inject another time once a week ... I'm getting a tad bit tired of needles ... my left thigh looks like a junkie's nightmare). But both doctors ultimately decided that I didn't need it. Thank goodness. I don't quite now how to go about getting all that pre-authorization for medication done. It's easier when the doctor's office spearheads it.
Next month, the results of the blood tests will decide whether I go for just 6 months. The key test is the Hep C viral load. According to blood test paperwork, in February it was 1.3 million. Then it went down to 74,000 a month ago then down again to 34,000 a week ago, then back up to 61,000 this week. If you can remember back to high school math, you'll know what logs are. They measure progress by the reduction of logs. So, there is a difference between 64,000 and 640,000 and 6,400,000, but very little difference between 64,000 and 31,000, if that makes any sense.
The goal is for the viral load to be undetectable by the next time my blood is drawn in 4 weeks. If it is undetectable, I have a really, really good chance of being "cured." If it is not, my chances are much less. However, the doctor said that there are a couple of papers out that indicate that slow responders sometimes do manage to be "cured" if they go for 72 weeks. He basically said that we'll see what happens next month, and make a decision. Apparently, some people give up if they're not at undetectable in three months. Knowing me, I'll probably sign up for the 72 weeks. Because I'm stubborn.
Having said that, damn, that's a long time to feel like you have the flu, not to mention many of the other side effects. One of these days I'm going to upload my notes on the 45 minutes of conversation that I had with the teaching nurse about possible side effects. Some of them are not attractive, to say the least.
However, despite being a little bit scared and a little somber today, I'm keeping my chin up, my hopes high, and putting one foot in front of the other, and doing my damndest to take life one day at a time, and of course, being sure to take the occasional swim in my pool and time to cuddle with my cats.
Wednesday, May 4, 2011
Good news!
The treatment is working! Woohoo!
I went to see my liver doctor yesterday, and he told me the results of my last round of blood tests, taken a week ago.
The most exciting news is that the viral load of the Hep C virus was at 2.5 million, and it is now 75,000. They hope that within the first four weeks the viral load comes down two logs. In other words from 2,500,000 to 25,000. Mathematically, there is not much difference from 75,000 and 25,000. What this means is that I am indeed responding to treatment.
Yay!
From looking at my test results, my white and red blood cell counts are a little low, but not more than they were before treatment started, so I guess he's not worried about it. :)
Now, onward and upward!
I went to see my liver doctor yesterday, and he told me the results of my last round of blood tests, taken a week ago.
The most exciting news is that the viral load of the Hep C virus was at 2.5 million, and it is now 75,000. They hope that within the first four weeks the viral load comes down two logs. In other words from 2,500,000 to 25,000. Mathematically, there is not much difference from 75,000 and 25,000. What this means is that I am indeed responding to treatment.
Yay!
From looking at my test results, my white and red blood cell counts are a little low, but not more than they were before treatment started, so I guess he's not worried about it. :)
Now, onward and upward!
Friday, April 8, 2011
Day #1 ...
I had an appointment with a very nice nurse named Val at UCLA last night, and she filled me in on how to administer my injections, and also about side effects and how to counteract them, etc. Then I did my first injection.
This morning I woke up feeling a bit like I had been hit by a truck. Achy and tired. Then I took the other medication with breakfast while at work, and I felt like I was speeding for a bit. Now, I'm crashing again. LOL.
It's going to be a fun 6 months!! September 30 is the last day!!
This morning I woke up feeling a bit like I had been hit by a truck. Achy and tired. Then I took the other medication with breakfast while at work, and I felt like I was speeding for a bit. Now, I'm crashing again. LOL.
It's going to be a fun 6 months!! September 30 is the last day!!
Saturday, April 2, 2011
Spring is here ...
I love when spring comes around.
Buds coming in on the potted peach tree on my patio.
New growth at the bottom of the peach tree.
The fresh leaves on my ficus tree.
An early rose.
Fresh growth of rose leaves and the faintest signs of rose buds.
Leaves are finally growing back on the tree that was brutally
trimmed this winter off my front upstairs balcony.
Another view.
HAPPY SPRING EVERYBODY!!
Thursday, March 31, 2011
Finally ...
One of the two liver meds was delivered today. The second one will be delivered on Tuesday. I have an appointment on Thursday evening to get trained on how to administer the injectable drug. And the six month count-down begins.
Finally.
Finally.
Tuesday, March 29, 2011
Nervous ...
I got a call from the pharmacy that my liver doctor had referred my meds to. They can only fill one of the prescriptions, the other needs to be filled by my insurance company's contracted pharmacy. I was given their number and told to call them and set up a delivery. I did call them, but they are still waiting for final authorization from the insurance company, which should be forthcoming in the next day or so. Then we'll have a conversation about delivery and co-pay, etc.
Right now, for some reason, I'm more nervous about this than I have been so far. Feels like efalumps are running around in my stomach.
Right now, for some reason, I'm more nervous about this than I have been so far. Feels like efalumps are running around in my stomach.
Monday, March 28, 2011
Meds update ...
I started the new HIV meds and the generic form of Prozac this weekend. So far no noticeable side effects, thank goodness. Keeping my fingers crossed that there won't be any.
I also just got a call from UCLA, and the pharmacy that will be handling the meds for the Hep C should be contacting me in the next day or two about getting my first month's supply delivered. They are just waiting for final authorization from the insurance company. As soon as I receive the meds, I have to set an appointment with a nurse at UCLA to teach me how to administer the interferon, and then the six months of treatment finally start.
Finally.
I also just got a call from UCLA, and the pharmacy that will be handling the meds for the Hep C should be contacting me in the next day or two about getting my first month's supply delivered. They are just waiting for final authorization from the insurance company. As soon as I receive the meds, I have to set an appointment with a nurse at UCLA to teach me how to administer the interferon, and then the six months of treatment finally start.
Finally.
Saturday, March 26, 2011
My first full-sized quilt ... photos
Here are some photos (unfortunately, not of the best quality) of the first full-sized quilt I ever finished. It took me a LONG time to do (as in over a decade), but I was very happy with it when I finished.
It's called a "jumble quilt" and I didn't do all the work on the top part, lots of people helped, but I did a good portion of it, and I did all the quilt stitching and seam binding:
Here's a picture of one of the corners that shows the seam binding on the front:
Here's a shot of a corner showing the seam binding on the back along with the back stitching:
Here's a shot of the back of the quilt (folded in half) ... gives you an idea of the flavor of it:
And one more shot of the whole thing:
Thursday, March 24, 2011
Beautiful photography ...
In my blog travels, I ran across this photographer, who has some really beautiful pictures that I'd love to have on my walls in my house. His website is a bit strange, so I've put the link that shows his "new work." There's a lovely picture of two men lovingly embracing in a sauna that really speaks to my heart.
http://www.johnarsenaultphotography.com/?page_id=5
http://www.johnarsenaultphotography.com/?page_id=5
Update ... reach around ... wankage ... whatever. ;)
I'm still waiting for the Hep C medication to be pre-authorized by my insurance company. The delay seems to be coming from some misplaced blood test result. So, I keep calling the doctor's office. Oy. Can't WAIT 'til this thing gets started, as I'm a little fried from the anticipation.
I went to visit my parents this weekend. My mom's going through some medical stuff herself, and although I've been talking to her fairly regularly and know what's going on, I was a bit freaked out by how it was affecting her. I went to say goodbye to her on Sunday, and gave her a long hug, and almost broke down in tears. Fortunately, I covered and she didn't notice.
My father is going to be taking a week long trip to visit his brother (who is also ill), and so is arranging for people to stay with my mom. My sister is the first choice, given that she doesn't have a job, and is very close to my mom. She asked me if I would help out with some of the time, and I was so freaked out in that moment that I said no. I spoke to her two days later and apologized for the "no" and had a long conversation about how to make sure she isn't the one who always has to deal with the sitution. This is when I need to open my heart and be willing to step up to the plate. Sometimes I worry that I'm not particularly brave when it comes to things that matter. I guess one has to be conscious and willing to be brave ... it doesn't come naturally, at least not to me.
My sister said that my mom had called after I left and was worried about ME, and that I was too thin, and that I must not be eating. My father called the next day and also said that I looked unwell. Not a good shot to my ego. Especially since my scale is telling me that I'm 217 lbs, which is about 10-12 pounds heavier than my lowest weight. I asked Michael if I looked unwell, and he just said that I had lost some weight, but that I looked fine. I think what people are noticing is that I've lost a lot of my muscle mass in my arms, chest, back and legs.
Intellectually, I'd like to go back to the gym, but I just can't seem to muster the energy. I had started walking again, mostly because my doctor told me to get to exercising to deal with my blood pressure, but my left heel kills me after walking a bit, and I end up limping. So, I'm at a loss as to what to do. I could use a work-out partner, but am not sure how to make that happen, given where I live, etc.
The last doctor I saw was my HIV doctor, and this is what came out of that meeting:
1. She is putting me on a low dosage of Prozac because the interferon, etc. tends to cause depression, and since I kinda battle it anyway, it's not a bad idea.
2. She cautioned me that I might find myself using again due to the emotional stuff that comes up on treatment. I was a bit taken back, but rather than defend myself and my sobriety, I merely nodded and listened. Honestly, I've got 8 years of continuous sobriety under my belt, along with a support system to go to in case of emergency, and using is just not one of my options. It was very sweet of her to say that if I did find myself using, not to worry, she would still take care of me.
3. She's taking me off Trizivir for HIV (which contains AZT) because it is contra-indicative to the interferon that I'll be taking. She's replacing it with two meds, Viread and Epzicom. Those meds have been ordered from the mail pharmacy (along withe Prozac), and I'm just waiting for them to show up. They're late, and I'm starting to get worried, but I'll wait 'til Monday, and then call and find out how to deal with missing meds.
*UPDATE* My meds showed up in the mail today!! Woohoo!!
4. She wants me to see her every month while I'm on treatment for Hep C. So, I'll have two doctors keeping an eye out for me.
5. My blood pressure was high again. Rather than throw more pills at me, she asked me to look at my diet and exercise program. Both are out of whack, so I'll have to figure it out again. On the food front, buying good quality food is a bit impossible at the moment, given food prices and my general lack of funds, so I've been relying on pastas and lunch meat, etc. Will have to rectify that very soon. The target blood pressure is less than 130 over 85. I'm normally at about 140 over 90. When I had it taken at the doctor's office, it was 151 over 101.
6. She suggested that I find out about FMLA, if I need to take some leave from work due to treatment. I'll have to check it out, but I seem to recall that FMLA only applies for a firm that's got a certain amount of employees, which my firm does not. Plus, me being out of the office for an extended period of time will be detrimental to their business, and the security of my job ... would really rather not do that. Having said all of that, it would be good to at least know what's out there.
7. She also suggested a support group at UCLA for Hep C, at least once. I'll check it out, as soon as I find out the when and what of the nurse practitioner lesson about managing the medication and the side effects.
Alright, end of wankage.
I went to visit my parents this weekend. My mom's going through some medical stuff herself, and although I've been talking to her fairly regularly and know what's going on, I was a bit freaked out by how it was affecting her. I went to say goodbye to her on Sunday, and gave her a long hug, and almost broke down in tears. Fortunately, I covered and she didn't notice.
My father is going to be taking a week long trip to visit his brother (who is also ill), and so is arranging for people to stay with my mom. My sister is the first choice, given that she doesn't have a job, and is very close to my mom. She asked me if I would help out with some of the time, and I was so freaked out in that moment that I said no. I spoke to her two days later and apologized for the "no" and had a long conversation about how to make sure she isn't the one who always has to deal with the sitution. This is when I need to open my heart and be willing to step up to the plate. Sometimes I worry that I'm not particularly brave when it comes to things that matter. I guess one has to be conscious and willing to be brave ... it doesn't come naturally, at least not to me.
My sister said that my mom had called after I left and was worried about ME, and that I was too thin, and that I must not be eating. My father called the next day and also said that I looked unwell. Not a good shot to my ego. Especially since my scale is telling me that I'm 217 lbs, which is about 10-12 pounds heavier than my lowest weight. I asked Michael if I looked unwell, and he just said that I had lost some weight, but that I looked fine. I think what people are noticing is that I've lost a lot of my muscle mass in my arms, chest, back and legs.
Intellectually, I'd like to go back to the gym, but I just can't seem to muster the energy. I had started walking again, mostly because my doctor told me to get to exercising to deal with my blood pressure, but my left heel kills me after walking a bit, and I end up limping. So, I'm at a loss as to what to do. I could use a work-out partner, but am not sure how to make that happen, given where I live, etc.
The last doctor I saw was my HIV doctor, and this is what came out of that meeting:
1. She is putting me on a low dosage of Prozac because the interferon, etc. tends to cause depression, and since I kinda battle it anyway, it's not a bad idea.
2. She cautioned me that I might find myself using again due to the emotional stuff that comes up on treatment. I was a bit taken back, but rather than defend myself and my sobriety, I merely nodded and listened. Honestly, I've got 8 years of continuous sobriety under my belt, along with a support system to go to in case of emergency, and using is just not one of my options. It was very sweet of her to say that if I did find myself using, not to worry, she would still take care of me.
3. She's taking me off Trizivir for HIV (which contains AZT) because it is contra-indicative to the interferon that I'll be taking. She's replacing it with two meds, Viread and Epzicom. Those meds have been ordered from the mail pharmacy (along withe Prozac), and I'm just waiting for them to show up. They're late, and I'm starting to get worried, but I'll wait 'til Monday, and then call and find out how to deal with missing meds.
*UPDATE* My meds showed up in the mail today!! Woohoo!!
4. She wants me to see her every month while I'm on treatment for Hep C. So, I'll have two doctors keeping an eye out for me.
5. My blood pressure was high again. Rather than throw more pills at me, she asked me to look at my diet and exercise program. Both are out of whack, so I'll have to figure it out again. On the food front, buying good quality food is a bit impossible at the moment, given food prices and my general lack of funds, so I've been relying on pastas and lunch meat, etc. Will have to rectify that very soon. The target blood pressure is less than 130 over 85. I'm normally at about 140 over 90. When I had it taken at the doctor's office, it was 151 over 101.
6. She suggested that I find out about FMLA, if I need to take some leave from work due to treatment. I'll have to check it out, but I seem to recall that FMLA only applies for a firm that's got a certain amount of employees, which my firm does not. Plus, me being out of the office for an extended period of time will be detrimental to their business, and the security of my job ... would really rather not do that. Having said all of that, it would be good to at least know what's out there.
7. She also suggested a support group at UCLA for Hep C, at least once. I'll check it out, as soon as I find out the when and what of the nurse practitioner lesson about managing the medication and the side effects.
Alright, end of wankage.
Monday, March 7, 2011
Doctor appointment stuff ...
I just got back from my appointment with the Dr. D (the liver specialist).
-- The liver biopsy showed signs of significant damage, almost cirrhosis, but not quite. He recommended starting treatment. Not to be snarky, but I told him a month ago we should treat, and that I'd like to get started NOW.
-- He mentioned a new medication that was coming out, but when I reminded him that he had told me that medication was not used to treat the Hep C genome that I had, he said that we should start with the old-fashioned treatment.
-- This clears the way to start a 24 week course of treatment with pegylated interferon and ribavarin. (Something about Alpha 2 vs. Alpha 1 ... I didn't know what that meant). This all could be MUCH worse. For instance, if I had genome 1, rather than genome 3, I'd have to do a year's course of it. Ouch.
-- His office will handle the pre-authorization process with my insurance.
-- They will call me to set up another appointment with Dr. D in 8 weeks.
-- About a week and a half before my next appointment with Dr. D, I need to have more blood drawn.
-- As soon as I jump through all the hoops and get the meds, I need to make an appointment with a nurse practitioner at UCLA so she (or he) can show me how to administer the meds, and give me pointers on coping with side-effects, etc.
-- Since AZT is part of my HIV regimen and shouldn't be taken with the Hep C meds I'm going on, I need to make an appointment with Dr. M, (the HIV specialist) to shift my HIV meds around.
Basically it looks like I could be rocking and rolling in 2 weeks to a month.
-- The liver biopsy showed signs of significant damage, almost cirrhosis, but not quite. He recommended starting treatment. Not to be snarky, but I told him a month ago we should treat, and that I'd like to get started NOW.
-- He mentioned a new medication that was coming out, but when I reminded him that he had told me that medication was not used to treat the Hep C genome that I had, he said that we should start with the old-fashioned treatment.
-- This clears the way to start a 24 week course of treatment with pegylated interferon and ribavarin. (Something about Alpha 2 vs. Alpha 1 ... I didn't know what that meant). This all could be MUCH worse. For instance, if I had genome 1, rather than genome 3, I'd have to do a year's course of it. Ouch.
-- His office will handle the pre-authorization process with my insurance.
-- They will call me to set up another appointment with Dr. D in 8 weeks.
-- About a week and a half before my next appointment with Dr. D, I need to have more blood drawn.
-- As soon as I jump through all the hoops and get the meds, I need to make an appointment with a nurse practitioner at UCLA so she (or he) can show me how to administer the meds, and give me pointers on coping with side-effects, etc.
-- Since AZT is part of my HIV regimen and shouldn't be taken with the Hep C meds I'm going on, I need to make an appointment with Dr. M, (the HIV specialist) to shift my HIV meds around.
Basically it looks like I could be rocking and rolling in 2 weeks to a month.
Liver biopsy done ...
I have decided that if given the opportunity to choose between an upper endoscopy and a liver biopsy, I'll take the upper endoscopy every time.
Liver biopsies? They tend to hurt.
Think of it like this. A very nice nurse gives you just enough sedation to keep you from bitching too loudly, and then a doctor tells you to exhale for ten seconds, while he shoves a knife in your side and removes part of your liver. Then you're told to breathe normally.
You are then wheeled back to your little curtain-enclosed area, and asked how you're doing. In answering, I used the term "uncomfortable" while rubbing my shoulder which had inexplicably started to hurt. The doctor noticed that I was rubbing my shoulder, and said that pain was from my liver as they had to go through my diaphragm to get the liver tissue. I asked if my liver had moved. I thought I was joking; he did not. The doctor said I should take deep breaths. Easier said than done.
The nurse then brings me some percocet, which eventually allows me to breathe fairly freely.
While grateful that the percocet took away the pain, I wasn't too happy that it knocked me on my proverbial ass for two days. I ended up calling in sick to work the next day because I just didn't feel comfortable enough to drive. And then I slept. And slept. And slept some more.
I think next time I'll just ask for Extra-Strength Tylenol and grit my teeth and bear it.
Today I find out the results of the biopsy, and then hopefully get this merry go round to start it's next revolution.
Between the doctor appointments, the interminable waiting, financial worries, and my natural insanity, I am not sleeping well, which means I'm sitting here at work today, not having slept more than a couple of hours last night, and trying not to lose my temper over the loud noises and the general stupidity of life, love and the pursuit of happiness, or lack thereof.
Whew!!! It's Monday, y'all!
Liver biopsies? They tend to hurt.
Think of it like this. A very nice nurse gives you just enough sedation to keep you from bitching too loudly, and then a doctor tells you to exhale for ten seconds, while he shoves a knife in your side and removes part of your liver. Then you're told to breathe normally.
You are then wheeled back to your little curtain-enclosed area, and asked how you're doing. In answering, I used the term "uncomfortable" while rubbing my shoulder which had inexplicably started to hurt. The doctor noticed that I was rubbing my shoulder, and said that pain was from my liver as they had to go through my diaphragm to get the liver tissue. I asked if my liver had moved. I thought I was joking; he did not. The doctor said I should take deep breaths. Easier said than done.
The nurse then brings me some percocet, which eventually allows me to breathe fairly freely.
While grateful that the percocet took away the pain, I wasn't too happy that it knocked me on my proverbial ass for two days. I ended up calling in sick to work the next day because I just didn't feel comfortable enough to drive. And then I slept. And slept. And slept some more.
I think next time I'll just ask for Extra-Strength Tylenol and grit my teeth and bear it.
Today I find out the results of the biopsy, and then hopefully get this merry go round to start it's next revolution.
Between the doctor appointments, the interminable waiting, financial worries, and my natural insanity, I am not sleeping well, which means I'm sitting here at work today, not having slept more than a couple of hours last night, and trying not to lose my temper over the loud noises and the general stupidity of life, love and the pursuit of happiness, or lack thereof.
Whew!!! It's Monday, y'all!
Friday, February 25, 2011
Money, money, money, money, MONEY!
I've got this song stuck in my head with the lyrics "Money, money, money, money, MONEY!" I can only remember one line of it, and since, let's face it, they lyrics aren't exactly uncommon, I have NO idea what song it is. It's annoying to have a song running through your head that you can't figure out. Oh well, I imagine it will occur to me at the oddest of times.
On the subject of money, last night, I got home to find a brochure in the mail from the hepatology department at UCLA with very helpful tips for starting my treatment. The section that stuck out the most was the bit about finances.
Turns out that the market price for pegylated interferon and ribavarin (the standard treatment) are about $1700 and $1400 respectively ... a month. They very dutifully warn me that some insurance companies don't cover the medications and that others have a huge co-pay and that I should get my financial house in order if I'm planning on paying for the meds myself. I pull out my calculator, press a bunch of buttons, and find out that if my insurance doesn't cover the meds, the course of the treatment will run about $28,000 (assuming 9 months of treatment). Oh. My. Frickin. G-d.
I must admit I panicked for a bit, and I went online to find out my pharmacy coverage. Of course, that part of Healthnet's website was down for maintenance (that's how I roll). I went to bed, only to be completely awake 3 hours later obsessing over the whole thing. I didn't get back to sleep 'til about 4:30.
I got up about 6:45, and went back online to check my coverage. Turns out self-injectibles (as pegylated interferon is classified as ... I hope) are covered, but I need to pay 20% of the price. The ribavarin is an oral medication, so my $30 a month co-pay should cover that one. Which brings the cost for me from a maximum of $3,100 a month to $370 a month. MUCH more doable. Still difficult, but doable. Especially since I don't have the monthly budget to pay for it every month, and will have to rely on savings. Fortunately, I also received my tax returns this morning in my checking account, so I have a couple of thousand dollars to devote to this. The tax return doesn't cover everything, but it will cover a great deal of it. Okay, now I'm breathing easier.
I'm going to have to do some fancy footwork toward the end of the year, but in the meantime, I'm going to get through it all. Oh yes, I am!! Brief panic aside, I'm incredibly grateful that I have resources to deal with all of this.
I have calls into UCLA to figure out where I go from here, get the pre-authorization stuff rolling and find out when I'm actually going to start getting the meds. It all should start in the next couple of weeks. I'm starting to get a little antsy about getting it started, so I'll be closer to getting it ended and back to my old self!
On the subject of money, last night, I got home to find a brochure in the mail from the hepatology department at UCLA with very helpful tips for starting my treatment. The section that stuck out the most was the bit about finances.
Turns out that the market price for pegylated interferon and ribavarin (the standard treatment) are about $1700 and $1400 respectively ... a month. They very dutifully warn me that some insurance companies don't cover the medications and that others have a huge co-pay and that I should get my financial house in order if I'm planning on paying for the meds myself. I pull out my calculator, press a bunch of buttons, and find out that if my insurance doesn't cover the meds, the course of the treatment will run about $28,000 (assuming 9 months of treatment). Oh. My. Frickin. G-d.
I must admit I panicked for a bit, and I went online to find out my pharmacy coverage. Of course, that part of Healthnet's website was down for maintenance (that's how I roll). I went to bed, only to be completely awake 3 hours later obsessing over the whole thing. I didn't get back to sleep 'til about 4:30.
I got up about 6:45, and went back online to check my coverage. Turns out self-injectibles (as pegylated interferon is classified as ... I hope) are covered, but I need to pay 20% of the price. The ribavarin is an oral medication, so my $30 a month co-pay should cover that one. Which brings the cost for me from a maximum of $3,100 a month to $370 a month. MUCH more doable. Still difficult, but doable. Especially since I don't have the monthly budget to pay for it every month, and will have to rely on savings. Fortunately, I also received my tax returns this morning in my checking account, so I have a couple of thousand dollars to devote to this. The tax return doesn't cover everything, but it will cover a great deal of it. Okay, now I'm breathing easier.
I'm going to have to do some fancy footwork toward the end of the year, but in the meantime, I'm going to get through it all. Oh yes, I am!! Brief panic aside, I'm incredibly grateful that I have resources to deal with all of this.
I have calls into UCLA to figure out where I go from here, get the pre-authorization stuff rolling and find out when I'm actually going to start getting the meds. It all should start in the next couple of weeks. I'm starting to get a little antsy about getting it started, so I'll be closer to getting it ended and back to my old self!
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