Phew! Thank God that's over

It's over. My last day of Interferon/Ribavirin therapy was last Thursday. Although I tried not to, I couldn't help expecting to feel better right away and I'm a bit disappointed that I don't. I can breathe a bit better, but so far that's the only change I'm able to detect, and the difference is not dramatic. I feel better, but I'm still wheezing. My friend Randi said she felt better right away, but I suspect that her memory has painted things in a rosier light than she saw them at the time. Also, her side effects were different. I know that I'll just have to wait for my hair to grow back, but I was hoping for some improvement in my hearing within the first few days, and because there's been no change at all I'm afraid the hearing loss is permanent. Probably, though, the improvement will happen so gradually that I won't notice it until suddenly I realize that I can hear at meetings again.

One other thing that's different is that I got my period this weekend, which might possibly be a coincidence, but somehow I doubt it. I haven't had a period since last August; it's been so long that I forgot what they were like. My trip to Rite Aid on the way home from the laundromat was fraught with pitfalls, as I navigated through the aisle of Easter candy on my way to the "feminine hygiene" section and passed by the cookie aisle during my search for trash bags. I'm afraid that I was unable to resist the chocolate -- I bought a bag of individually wrapped Dove chocolates, three quarters of which I consumed within an hour of getting home -- and I don't even like chocolate! I also bought a package of iced oatmeal-raisin cookies, although I'm proud to say that I haven't eaten quite so many of those. I plan to take them to work tomorrow and let my co-workers eat the rest. If they're not here, I won't eat them. Generally, in my infrequent forays into sweets-consumption, I'm a cookie-eater; I have a weakness for cookies of any variety, and especially oatmeal-raisin cookies, but chocolate leaves me cold, so it's surprising to me that I pounced so eagerly on the chocolates when I got home. I chalked it up to hormones and indulged my whim, hoping that this doesn't mean I won't be able to button my skinny jeans by next weekend.

I've been tired all weekend, perhaps because of my period, perhaps because I just finished fifty-four purgatorial weeks of Interferon/Ribavirin therapy and my body hasn't yet recovered. Whatever the cause, I didn't do much of anything beyond the usual cleaning, laundry and meetings. It's now Sunday evening and I'm only waiting until I've digested the chocolate somewhat before I crawl into bed. I feel dull and stupid, and when I found this morning that I dried up completely two paragraphs into a journal entry I allowed myself a sigh of self-pity. I'm tired of being stupid. My writing has gone to shit, my mind is dull, my memory is shot and I have the attention span of a three-year-old. I don't like it. I want my mind back. I want to be interesting again, and interested in more than music, fashion and boys. I want to be able to write a journal entry without trailing off in the middle, and I want to be able to go back and read it and be entertained. I'm like Charly, in Flowers for Algernon, only in the opposite direction.

In despair I texted my friend Jack, saying, "Please tell me I won't be stupid forever. My mind will come back someday, right?" He texted me back to say, "Even 'stupid' you are smarter than 95% of the drones. But it is going to take more than a few days for your body and mind to restore themselves." I don't know that I agree with the first part, but I needed to be reminded of the second. I'm too impatient. I want instant gratification. I want to be able to finish the NY Times crossword again. I let my subscription lapse last year because I'd lost interest in it. I wasn't even able to finish Thursday, much less Saturday, and I figured it would be a waste of money to renew this year. I also let my New Yorker subscription lapse, for the same reason, replacing it with a subscription to W Magazine, the first issue of which has yet to arrive. That last probably wasn't a great idea because of the stench. I subscribed to a year of Vanity Fair a few years ago and was unable to read a single issue because of the stink of the perfume ads. Taking it out of its plastic wrapper caused an instant, pounding headache. If W smells that bad it will go straight from the mailbox to the recycle bin, just like Vanity Fair, but I'm hoping for better things.

So, the titular year of Interferon is officially over. I've done what I set out to do in this blog, and I think I will probably leave it alone for awhile. I may come back and post an update here and there, to report on the abatement of the side effects and the results of whatever tests I have to have over the next six months, but it won't be every two to three weeks anymore. Not that anyone cares. Possibly, if I wait long enough, my next entry will be more interesting and entertaining.

Ballad of a cold lost marble

After a week or so of lethargy I've got enough energy for at least a short entry. After I wrote my last post my energy level nosedived and I spent two weeks dragging myself around like Quasimodo, just trying to make it through each day. It didn't help that Mark Linkous killed himself a little over a week ago, causing me to walk around under a cloud of gloom which hasn't really dissipated even now. His music has sustained me and fed my spirit for so long that I can't really take it in that there won't be any more. So I mourned his loss, tried to breathe and did the next indicated thing. It may not have been my most shining hour, but I got through it. I went to bed at about 8:30 every night for nearly two weeks and still couldn't get up to jump on my trampoline more than four mornings a week. I was in despair, thinking I would have to endure an entire month of that, but it eased up over this last weekend. We've had a lovely, warm and sunny few days, and my breathing is better, which makes all the difference. I didn't realize how bad my lungs were until I missed a Ribavirin dose last week, my first and only missed dose. I arrived at work and discovered that I'd left my meds at home, so I just had to skip that morning's dose, and later in the day I noticed that I could breathe. The difference was amazing, but the next day I went back to breathlessness and wheezing again. It's a bit better now than it was last week, but that's not saying much. I've got seventeen more days.

I've decided that I want to have a party when it's all over. My last day of treatment is April 1st and my birthday is April 13th, and I want to have a party to celebrate both of those events, only I don't want to have to give it myself, so I asked some friends to help me out. We'll have it here, at my house, because I've got a nice big back yard, but most of the work will be done by other people, which sounds really good right now. Probably by the time the day arrives I'll be fine with pitching in to help, but at the moment it makes me tired just thinking about it. So, the party will be April 17th, and I'm inviting a whole slew of guests, about half of whom will make it, probably. I'm also burning hours of music onto CD so that there's good music all day long. I've noticed that at parties I'm generally the only one who listens to the music, so I've decided to please myself this time and play the music I like. Fuck 'em if they don't like it. It's my birthday.

The cuts on my fingers are getting out of hand. I've had a deep cut on the tip of my right thumb for nearly three weeks now. It will start to heal and then reopen itself and gape for a few days, then start to heal again. It doesn't help that I'm clumsy and keep bashing it on things. I now know the truth of the cliché "sticks out like a sore thumb." And that's just one, of many. Every time I touch anything even remotely sharp I come away with a cut, which then takes ages to heal. I've got Band-aids on most of my fingertips every night, as I soak the cuts in Neosporin while I sleep, in a vain effort to get them to heal faster. And now I've got raw patches between my fingers. Not sure what that's all about, but I noticed it this morning. I rubbed Neosporin there, too, but it didn't seem to make much difference. In fact, it made no difference at all, but at least I got to feel like I was taking action to combat the problem. Seventeen more days.

Obviously I'm not feeling terribly inspired tonight. I think I've said everything I needed to say, and then some. I have a vague idea that at one time I was a good writer, but my memory is so shot that I can't say for sure. I hold onto a faint hope that when this is all over and my brain and body start to get over it I will find my lost writing talent, wherever it went to.

Seventeen more days.

The dawn approacheth

At long last I've got something good to say. I feel better. I have no idea what changed, or why, but my mood has improved and my energy level has gone way up since last week. There have been peaks and valleys all along, so I suppose I'm just on the upswing; I just hope it lasts another five weeks.

My mood isn't the only thing that's different. I seem to have opened up somehow and invited all sorts of change into my life. Most of the time the attention I get from men is underwhelming; they may notice me, but none of them dares approach me, I suppose because I can be intimidating and I often come across as an ice queen. Lately, though, I'm having to fight 'em off with a stick. I got asked out at the meeting last night, and today at the Goleta Jamboree I began to feel like the belle of the ball. Too bad none of the men in question was terribly interesting. The man who asked me out last night is a sort of biker/hippie with long, grey hair. He's a really sweet man, and very smart, but not attractive to me. I'm terrified of motorcycles and not really interested in aging hippies. I hope I let him down gently.

And then at the Jamboree I was hit on by Pepé le Pew. He was an older man -- in his fifties -- with a beret and a goatee and a hilarious Rico Suavé manner. At least, it would have been hilarious if I'd seen him trying it on someone else. As it is it was just annoying. First he complimented me on my pallor, and then he critiqued my ensemble from head to toe and pronounced it trés chic. I was waiting for him to kiss his fingers at me, but he refrained. It was a painful ordeal, and I was subjected to his attentions more than once, but I'm not complaining. It's just further evidence of this indefinable change.

The most exciting thing of all happened on Thursday night. I was leaving the women's meeting when my friend Jane thrust a piece of paper into my hand and said, "I think you should apply for this." It was a memo from a local non-profit organization where Jane works ten hours a week, announcing an opening for their Volunteer Coordinator position, a full-time position which pays more than I make now (enough more that I would notice the difference) with full benefits, which is not only not drudgery but actually seems interesting, and which I'm qualified for. I got so excited that I rushed home, spiffed up my résumé, wrote a cover letter and emailed them to the Executive Director. And now I wait for an interview. I would be a shoo-in under normal circumstances, especially with Jane's testimonial, but no doubt they've got a hundred applicants to sift through, some of whom may be more qualified than I am. Still, I've done the footwork and let go of the result. I hope and pray that I'll get this job, but if I don't I know that something else will come along. And soon. Things are changing.

To show that things are indeed changing, let me announce that I have a date on Tuesday night. With a man. My first date in two years. I'm not going to write about this one, though. This one is real, and I find that I'm not willing to disclose the details of my love life in this blog, even under cover of anonymity. The Pepé le Pews of this life are fair game, but I'll keep my dates to myself.

So, the weather is changing and spring is peeking out, and my life is proceeding apace. Things are looking up.

The end of the beginning

Six more weeks. I'm officially in overtime and getting more impatient by the day. My fear now is that I'm building up my release from Interferon hell so much that it's bound to be a disappointment. I'm afraid I expect too much. I know I'll feel better, but Interferon isn't the only thing that's wrong in my life. It's not as though finishing the treatment will make my job any more interesting. I've decided that as soon as I've made my final co-pay I'm going to polish up my résumé and start applying for jobs in Santa Barbara. I can't stand my job any longer and I just want out. I'll just have to take a chance and live with no health insurance for a couple of months.

What's odd is that I'm not even really sure what's so bad about what I'm dealing with. I just feel sort of generally wrong. I'll start to talk about it with someone and when they ask "where does it hurt?" I'm forced to say I don't know. The best description I can come up with is that I feel half-alive. My mind is dull, my sense of humor is dull, my body is tired. But somehow I can only see that in hindsight. In the moment I just feel what I feel. It's only later that I can see how tamped-down I was in this or that situation. When I compare how I felt last summer to how I feel now, I can see the degeneration. I feel like I'm hanging on by my fingernails. I shared some of this at a meeting the other night and my friend Randi emailed me the next day to say that I sound depressed, which is, of course, common on Interferon. Okay, I'll buy it, but if I'm depressed, it's not like any depression I've ever experienced before.

I don't want to be half-alive. I'm not even irritable very often anymore because I can't be bothered to care about much of anything. Mostly I just want to sleep, but my insomnia makes that difficult. I'm often tempted to take naps on the weekends but I'm afraid that if I do I won't be able to sleep that night, so I walk through my days like a zombie. I still force myself to get up and jump on my trampoline every morning, which means getting up at five every weekday. It's a penitential hour to get up, but I notice a difference if I skip the trampoline even one morning.

So...let's see. I'm tired and I feel dull and I can't sleep and I can't breathe and my fingertips are covered with cuts and I'm deaf and blind...and so forth. Okay, I'll allow that things aren't so great for me at the moment. It's sometimes hard for me to know if I've got a legitimate gripe or if I'm just wallowing in self-pity. Whatever I'm going through seems less than dire, simply because I'm going through it. I mean, I'm surviving it, so how bad can it be? But sometimes it really is bad, and I think this qualifies. What really pisses me off is that I'd be finished by now if my virus hadn't been so stubborn, but I'm doing my best not to think about that. It doesn't matter how long I've been on this medication; all that matters is that I have 39 days left. I've got 78 doses of Ribavirin, five shots of Interferon and one co-pay left.

I can do this.

Counting backwards

I think it's been three weeks since I've posted anything on here, a new record of sloth. Let my excuse be that I had nothing to say.

Eight more weeks. I've stopped counting months and am now counting days. In NA we give out key tags for recovery milestones: 30 days, 60 days, 90 days, etc, and naturally we count up. I would like to take key tags as I count down. I'm now past the 60-day mark and am heading toward 30 days. I've got 107 more doses of Ribavirin, seven more shots and one more co-pay. I'm so close I can taste it!

One advantage of slipping into apathy as I have been in the last few weeks is that my temper is more controllable. I'm still pretty grumpy, but I haven't got the energy to throw tantrums anymore so I let most things go. Musically I'm on a steady diet of Sigur Rós and Jack Rose, alternately. Sigur Rós soothe me and keep me calm and Jack Rose puts me in such a state of awe that I forget about being grumpy. His music also wakes me up and energizes me. It puts a smile on my face, which is pretty rare these days. I'm just waiting to feel better. My friend Randi said that she felt better right away after she finished her treatment, so I'm keeping my fingers crossed that the same will happen for me. I'd really like my voice back. I've been told that it sounds sexy, but it's not my voice. To my ears I sound like Fran Drescher, but my friends assure me that's not what they hear. Phew!

Friday night I went to Muddy Waters with my friend Rebecca to see Langhorne Slim. It was a good show, even though Ariel backed out at the last minute and Rebecca didn't stay for the whole thing. The first band were really good. They were so good, in fact, that Rebecca was sated by the time Langhorne Slim came on. She said, "I was spoiled by that first band. I had no patience with him," but I think it was more that she was just done. I know that feeling. It kept happening to me at All Tomorrow's Parties and was what made me decide that music festivals aren't really a good idea. But Rebecca missed the best part of the evening. I admit that Langhorne Slim's music isn't great, but he really is a good performer. He's much better live than on CD. After he played nearly a whole set with his band, he left the stage area and jumped up on the counter, where he sat and sang and played a little parlor-sized guitar for a few songs. What I love about a small venue like that is that a performer can do that sort of thing and be heard without amplification. The whole place was quiet (except for the drunk girl), and I could hear him perfectly from the back. I left when he rejoined the band on the stage. I'd loved that little intimate interlude so much that I didn't want to spoil the memory of it with overkill.

I've had a busy weekend. Yesterday I drove down to Hollywood with my sponsor Kim and my friend and fellow-sponsee Gina for Unity Day. I'd never been to it before so I didn't know what to expect. I don't like conventions because I get nervous around great crowds of people, so I was rather dreading this event, but it turned out to be pretty small, actually. We saw some really good speakers, but we were late getting back from dinner and were unable to get seats for the main speaker, and though we gamely stood at the back of the auditorium and gave it shot, it was too noisy back there and none of us could hear anything, so we decided to call it a day. I was ready to go by then anyway. I can only take so many speakers in one day. I'm not a big fan of speaker meetings in the first place. To me, they seem like dessert. Where I get fed is in the participation meetings, but these were a bit different because they were called workshops, and each speaker had a topic to share about. In all, it was a good day and I'm glad I went. I plan to go next year if it works out.

I think that's enough for today. I just sat here staring at the screen for ten minutes with nothing in my mind, so obviously I've run out of things to say.

Sound and fury

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.

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.