I don't want to write this entry.
One of the reasons I started this blog so there would be some sort of record of my medical progress as I entered this tunnel of darkness and hope. I hoped, probably a bit arrogantly, that some person going through a similar journey in the future would find some comfort and hope within the knowledge that they are not the only person that has gone through this. I admit that I had high hopes that I would come through the end of this journey and say, "See, it was all worth it, and it worked, and it will for you too!"
Unfortunately, I don't get to say that, which is why I don't want to write this entry.
Life isn't all about reaching the finish line first; sometimes it's about the runner that tripped on the last hurdle and didn't make it to the finish line, as much as he tried. Sometimes it's just about the story, and not the happy ending.
So, I'm gonna take a deep breath and record this anyway.
Last week I met with my liver doctor, and received the test results for which I had been waiting six weeks.
The short version is that the Hep C viral load rose, rather than fell. The medications weren't working. My doctor said that I could continue treatment for another year, but that honestly there was only a 1% to 2% chance of it succeeding.
Maybe it was the fatigue and depression talking, but I just couldn't spend another year being physically and emotionally miserable, all the while spending thousands more dollars that I didn't have for such a small chance of success. He said that he was disappointed that it didn't work, and that he'd like to see me every six months to monitor my liver, and that he also believed that new medications were coming out in three to four years that could help.
I said, "thank you very much for all your help, doctor." We shook hands. I left.
It was over.
There were a couple of people that asked to be called immediately after the appointment. First, I called Michael and told him the news, breaking into tears. Bless him, he immediately broke his plans with another close friend, and told me he would meet me for dinner.
Then, thinking that I had gotten myself under control, I called my father. I was wrong about the control part. I burst into tears again. I told him what was going on, and when he said that I must be very disappointed, I said, "that's one way to put it." He said, "Devastated might be the other?"
Yeah, that's it. Devastated. I had put so much hope into, and had so much riding on being "cured" of at least one fucking life-threatening disease in my life. For the first time, I seriously began to think I would become an old curmudgeon, married to an equally curmudgeon-like, but adorable man, watching nephews and nieces grow up to get married, have children and bring them to visit me so I could dispense my wisdom from the hallowed summit of my advanced age.
I began to think that maybe I'd be able forgive myself for becoming diseased. I had dared to think that maybe I wasn't going to be punished anymore.
When all this coalesced into my mind, I was like "What the hell?" Do I really believe I'm being punished? If so, by whom? For what?
Honestly, most of my being understands that difficult and cruel things happen to people, good, bad and in between. It doesn't matter if you're funny, kind, caring, and saint-like, sometimes things happen that there are no cures for. Sometimes mistakes are made that can't be unmade, no matter how much one regrets them. No matter how much one wishes that they had been smarter, and had made better choices. That's just the nature of life.
But sometimes, just sometimes, in the back of my soul, the locked container where all the fear and doubt and self-loathing breaks open, and I think, "Yes, I am being punished," and I believe with all of me that I deserve it.
Let me make one thing clear. I don't believe in a god that takes pleasure in punishing souls, and I refuse to be a part of any religion that does. I don't believe in Satan or supernatural beings that are made of pure evil to continually test and punish mortals. I just don't, all the preaching and pointing to holy books by our so-called spiritual teachers and politicians, notwithstanding.
It occurred to me that the only person that is truly capable of punishing me is ... me. Again, I don't know if it's the fatigue and the depression talking, but I can't seem to get past the idea that I'm just not worth being cured.
Today, I kept wondering what would happen if I ever lost my insurance, and couldn't pay for medical treatment, and I think I came to the conclusion that I'd just stop being treated medically, and let the diseases take their course. Hopefully, quickly. I refuse to be a burden on my family or my friends.
Won't Rand Paul, the libertarians and the republican parties be proud of me if I don't contribute to the deficit in any way, shape or form?
On the other hand, I'm not too fond of pain, so this seemingly very fiscally and socially prudent course of action will probably fly out the window. I'm weak that way.
Lest this post be completely depressing, there are some things that I'm proud of.
I got through the initial agreed upon course of treatment, and didn't give up. I took all of my medication each and every time, according to instruction. I've paid all my medical bills and didn't borrow a dime from anybody to do it. I didn't bitch too much. I also think that I only annoyed a minimum amount of people with self-indulgent whining. I'm sure there are people that wish I hadn't backed out of involvement with their projects, but I did the best I could. I didn't go over my allowed amount of sick and vacation days at my day job this year; a major feat, in and of itself. As a matter of fact, when I told my boss that the medication was done, and I would be doing a better job very soon, he told me that he hadn't really notice a decline in my work performance, and that he thought I handled it very well. Obviously, I hid the side-effects better than I thought I had.
I think that regardless of the fact that my body missed that last hurdle, my little journey over the past 9 months or so, is something to be proud of. There's nobody that can say I didn't do the very best I could, and if they do, I reserve the right to punch them in the nose.
If you find yourself on this blog wondering about your own journey with treatment for Hep C, I can't guarantee it will work, nobody can. All you can do is put one foot in front of the other and do the best you can and hope. You might reach that magical finish line, or you might not, but you ran the race, my friend. You ran the race with courage and heart. Seriously, there should be a medal for that.
For me, it's time to look to the future, and see what is in store. Hopefully with love in my heart, a smile on my lips, and a joyful laugh in my voice.
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Friday, September 30, 2011
Tuesday, August 2, 2011
Complete honesty is not always the best policy ...
I’ve had a hard couple of days.
I’m constantly battling exhaustion and trying to lead a productive life during this treatment. The battle tends to lend itself to irrational bouts of depression. The medication contributes to depression, which is why I’m on a fairly low dosage of anti-depressants, which have kept me out of the deepest pits of blackness during the past four months, but daily situational stuff also contributes.
This weekend my new roommate moved in. She and her mother drove out from Alabama to get her settled. I imagine her mother also wanted to make sure that I wasn’t an axe murderer, which I totally don’t blame her for.
In the three weeks prior to their arrival, I got all of my stuff out of what used to be my office, but which became her room, and painted it. Then I cleaned like a madman for three days because in the manual it says that when somebody’s mother is visiting, you clean. All in all, this took me about 3 weeks. I would work a bit, rest, work, rest, work, rest, ad nauseum, which strikes me as both necessary and pathetic.
Don't get me wrong, I’m very happy that she is moved in. She’s a wonderful lady, a talented artist and a good friend. She and her mother did an amazing job of decorating her room. Hell, it’s the nicest room in the house now. It’s so nice, I feel like I wanna throw rocks at the rest of my house. I guess I just gotta get off my ass, and get the rest of it painted. More work, rest, work, rest, work, rest, ad nauseum.
Back to the point. Lots of anticipation and changes (never mind that they are positive) and spotty sleep cycles have put me into a bit of a downward funk, and I am again faced with how much to share with other people about my general well-being.
I always think that the standard is my step-mother. She has literally walked around with a broken arm, taken a couple of Advil, and not said a word about how much it hurts. She finally went to the ER when I ordered her to get her ass into the truck and have my dad take her for an x-ray. She is and always has been strong and stoic, and the very definition of stiff upper lip, except when she’s really pissed off.
So, on one hand I think I should just get through all of this, don’t mention anything about it to anybody, and just say, "Everything is great!" Strong and stoic wins the day.
On the other hand, there are people that care, and honestly, I’m not doing many of the things that I normally do, and explanations need to be made to some people.
Unfortunately, there is also this pressure inside of me that builds and builds when I get really tired and emotional, and I find myself unable to hold it in anymore, and somebody will either see me crying at my desk, or some offhand joke that I make to cover all the inner turmoil will be seen by an observant friend as a cover, and bring it to my attention, and I feel embarrassed, weak and like a failure.
This is going to sound crazy, but I feel like I’m not a particularly capable or strong man. This issue is compounded now because four days out of five, I’ve had to go home and collapse onto the couch from exhaustion.
My father asks me all the time how I’m doing, and I always tell him I’m doing fine, just a bit tired. He’s got enough going on in his life and with his own health that he doesn’t need to deal with my daily ups and downs, plus he gets frightened that he’s going to lose me, and I have enough trouble dealing with my own fear at the moment.
Several friends have told me that I can reach out to them if I need somebody to talk to or commiserate with, and they are absolutely sincere and I very much appreciate the offer. However, with the exception of a couple of people, I’ve never felt comfortable calling up somebody and telling them that I feel bad. I guess it is because I’m fearful of being judged, thought of as being weak or a drama queen. Plus, there’s that whole "man" thing. Men don’t express their feelings, they shuffle along, do their job, and let the rest of it go undealt with. Right?
The crazy thing is that in my head, I’ve got all this crap going on, and the part of me that doesn’t like the other part of me, judges the crap constantly. Let me tell you, it can really wear one down.
I must say that I find it interesting that many of those people who say to call them if I need something, haven’t called or e-mailed to check on me even once since this whole thing began. I guess this is when one learns who really is a friend, or merely an acquaintance.
As I’m looking at all this, I guess the "answer" if there is one, is that I need to understand who is in the trenches with me, judiciously pick when to share the deep crap so that nobody becomes burdened by it, and to everybody else, just say, "I’m doing great, thank you for asking."
The truth is, the only person who is really in my head and sees the totality of my daily mishegoss is myself. Everybody else just gets the edited version, and that’s just the way life and the world are.
Maybe that's the way it should be, too.
I’m constantly battling exhaustion and trying to lead a productive life during this treatment. The battle tends to lend itself to irrational bouts of depression. The medication contributes to depression, which is why I’m on a fairly low dosage of anti-depressants, which have kept me out of the deepest pits of blackness during the past four months, but daily situational stuff also contributes.
This weekend my new roommate moved in. She and her mother drove out from Alabama to get her settled. I imagine her mother also wanted to make sure that I wasn’t an axe murderer, which I totally don’t blame her for.
In the three weeks prior to their arrival, I got all of my stuff out of what used to be my office, but which became her room, and painted it. Then I cleaned like a madman for three days because in the manual it says that when somebody’s mother is visiting, you clean. All in all, this took me about 3 weeks. I would work a bit, rest, work, rest, work, rest, ad nauseum, which strikes me as both necessary and pathetic.
Don't get me wrong, I’m very happy that she is moved in. She’s a wonderful lady, a talented artist and a good friend. She and her mother did an amazing job of decorating her room. Hell, it’s the nicest room in the house now. It’s so nice, I feel like I wanna throw rocks at the rest of my house. I guess I just gotta get off my ass, and get the rest of it painted. More work, rest, work, rest, work, rest, ad nauseum.
Back to the point. Lots of anticipation and changes (never mind that they are positive) and spotty sleep cycles have put me into a bit of a downward funk, and I am again faced with how much to share with other people about my general well-being.
I always think that the standard is my step-mother. She has literally walked around with a broken arm, taken a couple of Advil, and not said a word about how much it hurts. She finally went to the ER when I ordered her to get her ass into the truck and have my dad take her for an x-ray. She is and always has been strong and stoic, and the very definition of stiff upper lip, except when she’s really pissed off.
So, on one hand I think I should just get through all of this, don’t mention anything about it to anybody, and just say, "Everything is great!" Strong and stoic wins the day.
On the other hand, there are people that care, and honestly, I’m not doing many of the things that I normally do, and explanations need to be made to some people.
Unfortunately, there is also this pressure inside of me that builds and builds when I get really tired and emotional, and I find myself unable to hold it in anymore, and somebody will either see me crying at my desk, or some offhand joke that I make to cover all the inner turmoil will be seen by an observant friend as a cover, and bring it to my attention, and I feel embarrassed, weak and like a failure.
This is going to sound crazy, but I feel like I’m not a particularly capable or strong man. This issue is compounded now because four days out of five, I’ve had to go home and collapse onto the couch from exhaustion.
My father asks me all the time how I’m doing, and I always tell him I’m doing fine, just a bit tired. He’s got enough going on in his life and with his own health that he doesn’t need to deal with my daily ups and downs, plus he gets frightened that he’s going to lose me, and I have enough trouble dealing with my own fear at the moment.
Several friends have told me that I can reach out to them if I need somebody to talk to or commiserate with, and they are absolutely sincere and I very much appreciate the offer. However, with the exception of a couple of people, I’ve never felt comfortable calling up somebody and telling them that I feel bad. I guess it is because I’m fearful of being judged, thought of as being weak or a drama queen. Plus, there’s that whole "man" thing. Men don’t express their feelings, they shuffle along, do their job, and let the rest of it go undealt with. Right?
The crazy thing is that in my head, I’ve got all this crap going on, and the part of me that doesn’t like the other part of me, judges the crap constantly. Let me tell you, it can really wear one down.
I must say that I find it interesting that many of those people who say to call them if I need something, haven’t called or e-mailed to check on me even once since this whole thing began. I guess this is when one learns who really is a friend, or merely an acquaintance.
As I’m looking at all this, I guess the "answer" if there is one, is that I need to understand who is in the trenches with me, judiciously pick when to share the deep crap so that nobody becomes burdened by it, and to everybody else, just say, "I’m doing great, thank you for asking."
The truth is, the only person who is really in my head and sees the totality of my daily mishegoss is myself. Everybody else just gets the edited version, and that’s just the way life and the world are.
Maybe that's the way it should be, too.
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 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.
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 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!!
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