Has it been two weeks already? My, how time flies. I was thinking that I'd better do the hemoglobin update, but I don't know why it would be important. It's not as though anyone is sitting on the edge of their seat, breathlessly awaiting the results of my labs. No one even reads this blog. I could write suicide notes every week and no one would notice.
That makes me sound bitter and unhappy, but I'm not, truly. I was laughing while I wrote it. My hemoglobin is back up to an acceptable level, which has helped my mood considerably. I'm still anemic, and will be until the end of the treatment, but it's not so bad that I'm dragging myself around and gasping for breath. I'm just sick of the whole damned thing and I want it to be over. I want to turn off all the alarms on my phone. I want to be able to skip breakfast if I feel like it. I want my memory back. I want to be able to read a whole book without having to go back and reread bits of it because I've forgotten the plot. I'm sick of this blog, too. The only reason I keep it up is that I told myself I would stick it out until the end of the treatment. It's become something of a symbol of the treatment, actually. It's something distasteful I feel obliged to take care of on a regular basis.
Maybe I shouldn't have started writing tonight. I can't seem to keep the bitter tone out of my voice. It's strange, but I can feel the Interferon meddling with my moods. I can feel the difference between drug-induced depression and genuine depression, and my irritability feels artificial somehow, even though it gets me into real trouble. More and more often lately I can't control my temper. I've yelled at people in the supermarket and the laundromat. I've screamed at total strangers, with very little provocation. It's at its worst in the car -- I'm the one with her head out the window, yelling, "Get the fuck out of the way!" I wasn't exactly Gandhi before, but at least I was able to keep my mouth shut. Now I spend half my life apologizing for this or that explosion of temper.
Eleven weeks. I'll make it a day at time. I've been working on staying present and doing my best to enjoy whatever it is I happen to be doing at any given moment. I've found that my impatience just makes everything worse. I don't like my job, but if I spend all day hating it, not only am I exhausted at the end of the day but it makes each day seem eternal. It makes each task seem eternal. So, although what I do is not enjoyable, I'm sucking whatever enjoyment I can out of it. It's the only way I'll make it through the next eleven weeks. Once the treatment is over I can get another job.
So, my life is not terribly interesting at the moment, obviously. I invested in a really nice pair of computer speakers and have been exploring Lala, finding all sorts of music and spending much of my free time listening to it. At the moment I'm listening to Fishtank Ensemble, who are coming to Santa Barbara next month to play at Soho. I'll be there. And Langhorne Slim is also coming soon. He'll be playing at Muddy Waters, which is a tiny coffeehouse and a lovely, intimate place to see a show. I just hope it doesn't sell out before I get a ticket. On Friday I have a date with my friend Ariel to drive to LA to see a band called Movits!, a bunch of Swedes who play infectious swing and big band style stuff with a hip hop influence. I can't understand any of the lyrics, not being versed in Swedish, but it doesn't matter. Lyrics just aren't very important to me anymore. Lately I've been obsessed with Sigur Rós, whose lyrics aren't intelligible to anyone, and it doesn't matter. Their music is hypnotic and soothing to me, and I find that if I listen to it in the car I don't lose my temper as often. I've made a whole collection of the musical equivalent of dope to listen to in the car.
I think I've run out of things to say. Maybe my next post will be more interesting and hopeful. Let us keep our fingers crossed. Both of us.
Sunday, January 17, 2010
Friday, January 1, 2010
And hollow, hollow, hollow all delight
Melissa sent me a text at midnight, her time, which said, "Happy New Year! May it not be crappy or suck." I was so enchanted with this that I used it as my Facebook status this morning. I told her that I'm going to send out holiday cards next year saying just that. Aim low, and you may not be disappointed.
Thirteen more shots. And counting. A week or so ago I got my most recent lab results and learned that I'm so severely anemic that I may need a blood transfusion. Oh goody. Judy was concerned enough that she wanted me to go in right away, but Dr H said to give it another week and see if it stabilizes. Meanwhile, I've been taking an iron supplement and eating tons of dark green leafy vegetables, legumes, egg yolks and raisins, in the hope that I can bring my hemoglobin back up to an acceptable level. I had more blood drawn on Tuesday, but as of yesterday afternoon I still hadn't heard from Judy about the results, which I'm taking as an encouraging sign. She's forgotten to call me before, but it seems to me that if there was something terribly wrong with my results she would call me right away and not make me wait through a three-day weekend.
I was actually relieved to find out that I'm anemic. It explains a lot, like why I'm light-headed, why I get dizzy every time I sneeze, why I'm so tired all the time and why the breathlessness has been worse than ever for the last few weeks. Not to mention the general malaise. Most of these symptoms have improved in the last few days, which gives me hope that my efforts are paying off. After April I may never eat another raisin, lentil or hard boiled egg, but if they help to keep my hemoglobin stable I'll continue to shovel them in until then.
It's increasingly difficult to stay in the moment. I'm so close to finishing now that I can almost taste it, yet every day I'm tempted to quit. The breathlessness, the fatigue and the depression drag me down and before I know it I'm pouting and wallowing in self-pity, trying to convince myself that it doesn't matter if I finish this treatment or not because the Hep C was never going to get any worse anyway, and besides, I'm tired of feeling sick and tired and I can't afford the co-pay and I just want to feel good again. I feel like I've been cheated out of my forty-fifth year by this fucking disease, after my addiction already robbed me of sixteen valuable years. I haven't got enough left to spare. Every moment is precious and I don't want to waste any of them feeling sick and not up to much.
At the women's meeting a week ago I talked to a woman I haven't seen in awhile. She asked me how I was, and I said, "I'm good," which was true. At that moment I felt pretty okay. But then she asked about the Interferon, and my response was sort of like, "well, I'm tired and I'm deaf and I can't see very well and I'm having trouble breathing and I have insomnia and my hair is falling out and my voice is thrashed and my memory is shot and I haven't had a period in four months and if my hemoglobin drops any lower I'll need a blood transfusion, but I'm okay." She said: "I can see that you're exhausted."
"Can she?" I thought, feeling a bit put out and wanting to argue with her. Because, really, Camille is not the look I'm going for. I felt so damned good last summer, despite the Interferon, once I got my thyroid levels back up where they were supposed to be, but since then it's been a slow slide downhill, until now, when I resemble a consumptive courtesan. I know I look awful because I deal with it every morning in the mirror: without makeup I look like a corpse, pale as marble with deep purple shadows under my eyes, and with it I look like a clown because the color is all painted on. A clown with two black eyes. My indignation with Monique was for pointing this out. I want to hold my head up throughout this treatment. I don't want people to know how rough it is, and pity me. My vanity wants me to appear to sail through it, no matter how hard it is really, and as long as no one said anything I could pretend I was pulling it off. I suspect that no one has said anything because the people who see me all the time haven't noticed how bad I look. It was only because Monique hadn't seen me in several months that she was able to see the decline.
There's another reason why I wanted to put my fingers in my ears and yell, "La la la! I can't hear you!" The way I felt was, don't tell me I'm exhausted because I didn't know. I was sort of like the cartoon character who runs off the cliff and keeps running as long as he doesn't know where he is, and now, although I haven't given up, it's just a bit harder. Sometimes denial can be a good thing. Until I had that conversation, I would have a moment of doubt and despair every few days, a moment when I would think, "I don't know if I can do this." But the moment would pass and I would soldier on regardless. And now I have those moments several times a day. It's possible that I would feel this way whether I'd talked to Monique or not, though, because the breathlessness is what causes those moments of despair, nearly every time. It's when I can't breathe that everything seems impossibly difficult and exhausting. As long as my lungs are working okay, I can deal with the rest, but the breathlessness is the one symptom which just keeps getting worse. Well, that and the deafness, but the deafness doesn't cause despair.
I'll do my shot tonight and I'll keep going, a day at a time. I've made a commitment to myself to continue this treatment until it's finished, and that's what I'll do, no matter what kind of pity party is taking place between my ears. Thank God for all my recovery training. It's really paying off this year.
Thirteen more shots. And counting. A week or so ago I got my most recent lab results and learned that I'm so severely anemic that I may need a blood transfusion. Oh goody. Judy was concerned enough that she wanted me to go in right away, but Dr H said to give it another week and see if it stabilizes. Meanwhile, I've been taking an iron supplement and eating tons of dark green leafy vegetables, legumes, egg yolks and raisins, in the hope that I can bring my hemoglobin back up to an acceptable level. I had more blood drawn on Tuesday, but as of yesterday afternoon I still hadn't heard from Judy about the results, which I'm taking as an encouraging sign. She's forgotten to call me before, but it seems to me that if there was something terribly wrong with my results she would call me right away and not make me wait through a three-day weekend.
I was actually relieved to find out that I'm anemic. It explains a lot, like why I'm light-headed, why I get dizzy every time I sneeze, why I'm so tired all the time and why the breathlessness has been worse than ever for the last few weeks. Not to mention the general malaise. Most of these symptoms have improved in the last few days, which gives me hope that my efforts are paying off. After April I may never eat another raisin, lentil or hard boiled egg, but if they help to keep my hemoglobin stable I'll continue to shovel them in until then.
It's increasingly difficult to stay in the moment. I'm so close to finishing now that I can almost taste it, yet every day I'm tempted to quit. The breathlessness, the fatigue and the depression drag me down and before I know it I'm pouting and wallowing in self-pity, trying to convince myself that it doesn't matter if I finish this treatment or not because the Hep C was never going to get any worse anyway, and besides, I'm tired of feeling sick and tired and I can't afford the co-pay and I just want to feel good again. I feel like I've been cheated out of my forty-fifth year by this fucking disease, after my addiction already robbed me of sixteen valuable years. I haven't got enough left to spare. Every moment is precious and I don't want to waste any of them feeling sick and not up to much.
At the women's meeting a week ago I talked to a woman I haven't seen in awhile. She asked me how I was, and I said, "I'm good," which was true. At that moment I felt pretty okay. But then she asked about the Interferon, and my response was sort of like, "well, I'm tired and I'm deaf and I can't see very well and I'm having trouble breathing and I have insomnia and my hair is falling out and my voice is thrashed and my memory is shot and I haven't had a period in four months and if my hemoglobin drops any lower I'll need a blood transfusion, but I'm okay." She said: "I can see that you're exhausted."
"Can she?" I thought, feeling a bit put out and wanting to argue with her. Because, really, Camille is not the look I'm going for. I felt so damned good last summer, despite the Interferon, once I got my thyroid levels back up where they were supposed to be, but since then it's been a slow slide downhill, until now, when I resemble a consumptive courtesan. I know I look awful because I deal with it every morning in the mirror: without makeup I look like a corpse, pale as marble with deep purple shadows under my eyes, and with it I look like a clown because the color is all painted on. A clown with two black eyes. My indignation with Monique was for pointing this out. I want to hold my head up throughout this treatment. I don't want people to know how rough it is, and pity me. My vanity wants me to appear to sail through it, no matter how hard it is really, and as long as no one said anything I could pretend I was pulling it off. I suspect that no one has said anything because the people who see me all the time haven't noticed how bad I look. It was only because Monique hadn't seen me in several months that she was able to see the decline.
There's another reason why I wanted to put my fingers in my ears and yell, "La la la! I can't hear you!" The way I felt was, don't tell me I'm exhausted because I didn't know. I was sort of like the cartoon character who runs off the cliff and keeps running as long as he doesn't know where he is, and now, although I haven't given up, it's just a bit harder. Sometimes denial can be a good thing. Until I had that conversation, I would have a moment of doubt and despair every few days, a moment when I would think, "I don't know if I can do this." But the moment would pass and I would soldier on regardless. And now I have those moments several times a day. It's possible that I would feel this way whether I'd talked to Monique or not, though, because the breathlessness is what causes those moments of despair, nearly every time. It's when I can't breathe that everything seems impossibly difficult and exhausting. As long as my lungs are working okay, I can deal with the rest, but the breathlessness is the one symptom which just keeps getting worse. Well, that and the deafness, but the deafness doesn't cause despair.
I'll do my shot tonight and I'll keep going, a day at a time. I've made a commitment to myself to continue this treatment until it's finished, and that's what I'll do, no matter what kind of pity party is taking place between my ears. Thank God for all my recovery training. It's really paying off this year.
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