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.
"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." - Christopher Robin to Pooh.
Showing posts with label feelings. Show all posts
Showing posts with label feelings. Show all posts
Friday, September 30, 2011
That leg of the journey is over ...
Labels:
divinity,
family,
feelings,
finances,
medical,
observations,
side effects,
thoughts
Thursday, August 11, 2011
Epiphany ...
I had an epiphany some years ago when I was young and trying to figure out what my place in the world was.
At some point, I realized that the only thing that was truly being asked of me on a soul level during this life time was to learn how to love. It was a HUGE earth-shaking revelation to me, which was followed by the realization that I didn't really know how to love, and that I'd have to learn. Oh, I was certainly capable of love. I think that all beings are capable. It's the gift of the divinity that surrounds us and permeates us, or perhaps it's just the gift with purchase of our humanity.
But to really love? I didn't know if I had it in me. I was selfish and self-protective and my armor was 10 feet thick because I didn't think I deserved to have anybody love me, so why should I love them? They'd just ricidule me and then leave I sometimes still don't think I deserve it, but I've gotten much better. It's especially difficult when one is being bombarded by hateful messages from politicians, church-leaders, neighbors and media outlets.
To really be able to love doesn't just mean to feel wonderful in the presence of family or friends or lovers. The character of Lao Ma on the television series, Xena, says to Xena that it's easy to love somebody who loves you back, it's kind of a good business arrangement, it's more difficult to love somebody who doesn't love you. (Forgive me, Xena fans, I know I'm paraphrasing.)
I'm learning, very slowly at times, what it means to be able to extend that benevolence, understanding, compassion, and forgiveness against those people who hate you, who actively preach against you and demonstrate and call you horrible, horrible names and accuse you of unspeakable acts, and what it means to get past one's own fears about rejected and loneliness and just love without expecting anything in return.
I must admit that it's difficult for me. I sometimes feel like I'm seen as the enemy by a great deal of society, feel rejected, less than, hopeless and scared. When somebody like Fred Phelps, Ruben Diaz in the New York state senate, Michelle Bachman, and the Pope spout off their anti-gay rhetoric or somebody calls me a "faggot," I get angry. Worse, I get scared. Anger and fear will get in the way of love, and it takes an extraordinary act of calmness, trust and forgiveness for me to get past it and get to love.
Some years ago, there was a television show called Touched by an Angel. Many of you will remember it, as it was very popular.
There was one episode with Wynona Judd that touched me deeply, and she peformed a song in the climactic scene that speaks of how I feel about love. In a world where hatred and fear is spoken of constantly, and talks about love and compassion are few and far between, it behooves me to Testify to Love. This song reminds me that I am not alone in this journey to learn how to love.
Here is the clip from the show, and the lyrics follow:
All the colors of the rainbow.
All the voices of the wind.
Every dream that reaches out.
That reaches out to find where love begins.
Every word of every story.
Every star and every sky.
Every corner of creation.
Lives to testify.
For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.
From the mountains to the valley.
From the rivers to the sea.
Every hand that reaches out.
Every hand that reaches out to offer peace.
Every simple act of mercy.
Every step to Kingdom Come.
All the hope in every heart will speak what love has done.
For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.
That clip still makes me cry.
So, do me a favor today, take the time to hold the hand of your closest friend, your lover, your wife, your husband, your son, your daughter, your pet, your neighbor, tell them that you love them, and then both of you together turn to love somebody else.
I'm pretty sure that the world will be a better place for it, and even if it isn't, you'll feel better.
At some point, I realized that the only thing that was truly being asked of me on a soul level during this life time was to learn how to love. It was a HUGE earth-shaking revelation to me, which was followed by the realization that I didn't really know how to love, and that I'd have to learn. Oh, I was certainly capable of love. I think that all beings are capable. It's the gift of the divinity that surrounds us and permeates us, or perhaps it's just the gift with purchase of our humanity.
But to really love? I didn't know if I had it in me. I was selfish and self-protective and my armor was 10 feet thick because I didn't think I deserved to have anybody love me, so why should I love them? They'd just ricidule me and then leave I sometimes still don't think I deserve it, but I've gotten much better. It's especially difficult when one is being bombarded by hateful messages from politicians, church-leaders, neighbors and media outlets.
To really be able to love doesn't just mean to feel wonderful in the presence of family or friends or lovers. The character of Lao Ma on the television series, Xena, says to Xena that it's easy to love somebody who loves you back, it's kind of a good business arrangement, it's more difficult to love somebody who doesn't love you. (Forgive me, Xena fans, I know I'm paraphrasing.)
I'm learning, very slowly at times, what it means to be able to extend that benevolence, understanding, compassion, and forgiveness against those people who hate you, who actively preach against you and demonstrate and call you horrible, horrible names and accuse you of unspeakable acts, and what it means to get past one's own fears about rejected and loneliness and just love without expecting anything in return.
I must admit that it's difficult for me. I sometimes feel like I'm seen as the enemy by a great deal of society, feel rejected, less than, hopeless and scared. When somebody like Fred Phelps, Ruben Diaz in the New York state senate, Michelle Bachman, and the Pope spout off their anti-gay rhetoric or somebody calls me a "faggot," I get angry. Worse, I get scared. Anger and fear will get in the way of love, and it takes an extraordinary act of calmness, trust and forgiveness for me to get past it and get to love.
Some years ago, there was a television show called Touched by an Angel. Many of you will remember it, as it was very popular.
There was one episode with Wynona Judd that touched me deeply, and she peformed a song in the climactic scene that speaks of how I feel about love. In a world where hatred and fear is spoken of constantly, and talks about love and compassion are few and far between, it behooves me to Testify to Love. This song reminds me that I am not alone in this journey to learn how to love.
Here is the clip from the show, and the lyrics follow:
All the colors of the rainbow.
All the voices of the wind.
Every dream that reaches out.
That reaches out to find where love begins.
Every word of every story.
Every star and every sky.
Every corner of creation.
Lives to testify.
For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.
From the mountains to the valley.
From the rivers to the sea.
Every hand that reaches out.
Every hand that reaches out to offer peace.
Every simple act of mercy.
Every step to Kingdom Come.
All the hope in every heart will speak what love has done.
For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.
That clip still makes me cry.
So, do me a favor today, take the time to hold the hand of your closest friend, your lover, your wife, your husband, your son, your daughter, your pet, your neighbor, tell them that you love them, and then both of you together turn to love somebody else.
I'm pretty sure that the world will be a better place for it, and even if it isn't, you'll feel better.
Labels:
divinity,
epiphany,
feelings,
love,
observations
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.
Labels:
family,
feelings,
observations,
personal relationships,
side effects,
thoughts
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 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.
Labels:
feelings,
personal relationships,
side effects,
thoughts
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.
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.
Subscribe to:
Posts (Atom)