Friday, December 31, 2004

Moving On

Well, 2004 was an interesting year. And that's about the best I can say for it. Personally, politically, and worldwide it was a disaster. And, unfortunately, all the disasters are still raging on. It's goddamn difficult to find the light and the joy in the midst of all this. Tell me, what's the upside of Iraq or George (Gidget) Bush, or the Tsunami, or Hepatitis C? Don't bother to answer. All I know is that we still have to press on, no matter how difficult, absurd, or painful things are. Why? Because that's what we have to work with. Maybe things will turn around, maybe we'll all wake up from these bad dreams and start treating each other with kindness and love. But probably not. I think endurance is the key. I've been learning that waiting has its own rewards. Maybe it's just another way of learning the value of patience. I've never been good at delayed gratification, always wanting what I want when I want it - and, of course, rarely getting it. Now that I have no choice but to wait, I'm forced to note all the small, good moments that still make their way through even the worst mess. As sick as I've been, I have never had more moments of gratitude and love than I've had in the past three months.
Now, I ain't gonna start off the year being a pollyanna; this sucks, and if given the option, believe me, I wouldn't be poisoning my body every day with chemicals and George wouldn't be in the White House and the whole world would be peaceful. But, these are not viable options. This is what I've got, this is what we've all got: Struggle, endurance, hope. Happy New Year.

Thursday, December 30, 2004

Sleep Deprivation

Didn't sleep hardly at all last night. And so today am even more shaky than usual. Every day is a new adventure here in chemo world. One of the (many) reasons I didn't sleep was because I was nervous about the results of my last blood tests. I'm still waiting for the phone call that will give me the good/bad news. My nurse manager calls to discuss my situation after each blood draw. She seems quite competent and caring (as much as anyone can be caring on the phone), but I feel like I'm once removed from the real seat of information and authority - my doctor. I haven't seen him since I started treatment 13 weeks ago. Whatever happened to the doctor/patient relationship? I thought modern medicine was moving more in the direction of valuing that personal contact. I just finished rereading Norman Cousin's book, "The Anatomy of an Illness," in which he makes the case that almost nothing in treatment is more valuable than to have the patient feel that they are truly being seen, that they are not just a statistic. I can't say I've had any sense of being seen as a real person in my treatment. Maybe it's part of receiving health care from a large HMO. Sometimes, when I go there, it feels like I'm lining up for medical attention in the old Soviet Union. I want them to look at me, dammit, not my health care number. I'm going to try to be a stronger advocate for myself there. Maybe it's a case of squeaky wheel syndrome. I'm going to ask (demand?) that I have an appointment with my doc, the gastroenterologist in charge. I want some real face time, time to ask questions, to find out if what I'm going through is normal, to maybe get some reassurance that all is going well, or at least as well as can be expected. And I don't want to have that conversation on the phone.
I heard an Iraqi woman speaking on TV yesterday. (Okay, okay, it was on Oprah. I'm desperate here.) She said that a major problem for Iraqi women is addiction to Valium. Apparently, it can be bought very cheaply there and, in a dangerous and often hopeless, world, it provides the only relief they can find. I definitely can relate - though my situation is not so grim. But that impulse to make it all go away - at least for an hour or two - is more than tempting. It wouldn't be hard to go down that old road.

Tuesday, December 28, 2004

Faking It

This winter is likely to be a soul cruncher. We've been lucky so far, still seeing the sun on occasion. But for those of us with an inclination toward depression anyway, these months can be a challenge, a challenge not to drop into a deeper, darker hole. Sometimes I think that the only way to get through both the winter and one's life is to fake it. Isn't that the AA line, fake it to make it. Life is just too hard and grim at times, especially when you add in a serious illness. The natural and, I believe, rational response to much of what life throws at you is to be bummed out. Hey, man, who needs this. Let me just lie down and sleep till it's over - whatever it might be. But you can't go there. That's too easy an answer. I don't have any idea why I know this, but I do know that none of us can give up. Sure there are going to be days, even weeks, where the only sane response to an insane world is to climb into a warm bed and pull the covers over your head. But, in the end, there ain't no life there. The question then becomes, how the hell does one stay positive in the face of hard times. This is no idle question for me at this point. I'm struggling every day to not fall in to that hole in the ground, not to give up talking and walking and going to the movies. And, as if you didn't know this, I have absolutely no fucking answers. All I know is that I have to keep looking for them - the answers, the comforts, the reasons to face another hard day, to take another poisonous shot, to get out of bed and go take a shower when I know I'm going to be sick and dizzy by the time I'm done. But at least I'm up, man, and there is big potential in that. Maybe it's a spiritual answer I'm looking for, but that's complicated and long and, probably basically unknowable. But then maybe it's all spiritual. In a way, it has to be. Why else would we all go on taking this pain and suffering? Okay, okay, I'm done. Enough bullshit. I'm up and about. What else can I ask for? Well, let me see . . .

Monday, December 27, 2004

Getting Past My Self

I keep banging in to myself. No matter how I try to hide or duck. Sooner or later I'm face to face with me. And I sure don't always like what I find. The longer this treatment goes on, the more I feel rubbed raw. Everything is either right on the surface or buried as deeply as I can bury it. Then, since I was raised in a certain way at a certain time, I was taught that people shouldn't complain about their situations, including medical ones. I guess, the thinking goes, that it's a sign of weakness and generally unseemly -especially for a grown man. But it can become a potent combination for rage and terror, when one tries to contain the very thing that is consuming all of their waking hours. If you can't tell the people you love what you are truly feeling, there's a tension that builds, a feeling that nobody understands or cares. And it's true, some people, even good friends and family, don't seem to want to hear what you are going through. It's understandable; many were raised with the same weird values as I was. They are more comfortable hearing that everything is going just fine, now let's make small talk. And you want to go along - you don't want to add to their burden of apprehension, especially family members at a distance. I mean, they're worried and don't know quite what to do or how to help. So, when they call or I see folks out in the world, my response to their "How ya doing?" is vague and basically untrue: "I'm okay, hanging in there, you know how it is." But then I end up feeling isolated, both by friends and family and by my own actions. I'm trying to work on this problem in myself. I need to talk truthfully to the people who I know will listen, and want to. If I have to be a complainer, I'll be a complainer - and those who don't want to hear it, can always hang up the phone or stop reading this blog. With all that I'm burdened with in this part of my life, I just can't keep it all contained - and won't. But first, I have to get past myself.

Tuesday, December 21, 2004

A Time For a Break.

We're driving to the coast today to spend three days in Manzanita. It will be the first time Bev and I have gotten away for more than a day since the treatment started. I'm excited, but also a bit wary. I worry that I won't be able to do any of the things we enjoy doing on vacation. I know I won't be able to go for long walks on the beach or drive all the way there by myself or enjoy eating out at funky cafes and top notch restaurants. But what the hell, Mister Negative,
I'll still be able to look at the ocean and read and relax, hang with my honey and maybe even get some emotional relief from the ongoing debilities (yes, the drugs have to go with me.) The ocean has that effect on me. Just the sound is more soothing than anything I could read in philosophy
Anyway, it'll be a kick in the head and when we come back on Friday, we're having dinner with friends on Xmas eve - for Jews and orphans, Bev says. By that time I should be thoroughly, contentedly, exhausted and ready (????) for week twelve injection. This is a big one. It means I've gotten through the first quarter of the 48 weeks, but more importantly, it's when I get tested to see if the viral load is actually going down - the main point of all this torture. I'm barely allowing the thought that it might not be working. I couldn't handle the idea of all this discomfort for nothing. Not to mention that if the chemo ain't doing its thing, I ain't gonna be doing mine for long. But enough of these evil thoughts. It's time to get packed and get drawn, like little wet animals, to the Pacific.

Monday, December 20, 2004

Indulging Myself

Another difficult weekend. So what's new? You'd think I'd get over it by now, but somehow that's not the way it works. If you've ever suffered a really bad flu - chills, fever, splitting headaches, you know basically what my weekend feels like - just add in a solid handful of dizziness, shortness of breath, and nausea and you've got it. What I'm saying is there ain't no way to get over it - except momentarily. By Sunday night I feel so worn out, that I sometimes wonder how I can manage to go on. That's when I'm really down and feeling sorry for myself. It's a mind game. Yes, the pain is real, but the game is to keep figuring out how to live with it and not give up. Some days I do that better than others. Well, today is Monday, so I'm feeling somewhat better. Okay, okay, I feel considerably better. There, are you happy now? I know sometimes I just want sympathy. An additional side effect of chemo seems to be to turn me back into an eight year old who wants to just stay in bed and have Mommy take care of me. It's okay. I'm allowed to feel that way. I can indulge myself. In a weird way, my understanding of my childhood and my relationship with my parents has also grown. I don't blame them for nearly as much and my memories seem to grow sweeter, more forgiving. I wish they were still around so I could tell them. Tell them I know now how hard they worked to make me feel safe and comfortable and loved. Just like I made that same life long effort with my children. And in neither case did it seem to work. Maybe that's how families have to be - pushing and pulling until it's too late to say the things they really mean. Maybe in some twisted way, my feeling sick all weekend allows me to stay in touch with that little boy who needed his parents more than anything in the world and could never figure out how to tell them. Maybe my being a basket case for 48 weeks will help me to figure out how to tell the people who are still around how much they mean to me.

Friday, December 17, 2004

Cliches

It's the middle of December and the sun is shining. I may even get out and walk today - for a few blocks anyway. That's my limit before I start wondering whether I'll make it back myself or have to call Bev on the cell phone to come pick me up. But I'll take what I can get, especially before the week-end when I tend not to get out of the house (or sometimes the bed) at all. This treatment can really bring home the meaning of cliches. "Live for the moment." "Take the good with the bad." "Time marches on." So, it's December and soon it will be January, 2005. I don't think I ever imagined living to the year 2005 - certainly not back in the Sixties and Seventies. The idea then was to live hard and leave a handsome corpse. I came close, but I'm glad I survived, as did most (not all) of my friends. And now we're faced with 2005 and George (Dumbass) Bush, is our President. What the hell has happened. I'm still not over the election. I think that was more traumatic and disappointing for me than having to go through 48 weeks of chemotherapy. And I still haven't quite figured out how to deal with either, other than to keep on keeping on and keep my head down, and focus on the sunshine . . . I could go on. Of course, one sometimes grows weary of cliches too. It would be satisfying to be more proactive, to storm the damn gates and take no prisoners. I have no idea what any of that means. It's not the time for revolution. It's the time for patience. That's truly been my steepest mountain to climb during this period (or any time period). To be able to hold the stillness and wait. Another cliche, which I'm not sure is true, but may be. "All good things come to he who waits." Nah, I don't think so. It's best to have a combination of waiting for what you can't have now and working on what you can. My challenge is ongoing - not all that different now than it was before I started treatment. I have to keep finding that place inside myself that allows me to be free - for a day, a minute, a second. Don't get me confused with some mystic or saint (I'm sure there's no chance of that), I'm not talking perfect goodness here - just the very occasional glimpse of a better me. Bring on 2005 and whatever comes after. Which would be 2006, I'm guessing.

Thursday, December 16, 2004

Bah Humbug, Boo-Hoo

I can't say that this is my favorite time of year. So I won't. Fact is, I despise this damn Xmas bullshit - with all due apologies to the few people remaining on the planet who still view December 25th as a religious holiday. It's not even the commercialism of the whole thing that bothers me, though it is somewhat disgusting how people spend money that they don't have on people they don't particularly care about. But what the hell, when the credit card bills start coming in, you probably won't even remember what all that money went for. I'm such a cynic, I know. But maybe that's not such a bad thing. The thing that most gets me about the "holiday" season is the effort at forced jollity. Those words just don't fit together. Because you walk around at work with a ridiculous looking hat on your head and sing carols that are often offensive to your non-Christian colleagues (yes, these people do exist) doesn't mean that there is anything particularly joyous going on. In fact, the whole endeavor smells of desperation. As do the extravagant light shows and keeping up with the neighbors. Would you really want to live on Peacock Lane? What if you were Jewish or Muslim and didn't know what you had gotten yourself into. Us outsiders tend to keep a low profile this time of year - at least as much as possible. Of course that doesn't stop the TV from its endless "jolly" ads, nor does it stop the assumptions of well meaning friends that you might like to receive cards emblazoned with the nativity scene. Hey, from what I can tell, Jesus was a pretty good guy, but stop forcing him on me, will you. Yeah, yeah, happy birthday already. Like anyone even really cares about that.
I think what is really at the heart of my seasonal bitterness are childhood wounds. (Those are at the heart of just about everything short of nuclear war.) As bad as this Xmas business can be, it was much worse in some ways back in the fifties and sixties, when school administrators had not yet been made aware of cultural and religious diversity and it was widely assumed that everyone was indeed a Christian and should participate in all the rituals thereof. Like a lot of Jewish kids of my generation I was coached at home by my parents on how to get through this trial without either giving myself away or crying. When all the kids had to stand up on stage in the auditorium to sing Christmas carols, we were told to go ahead and sing, but to silently mouth any words that made us feel uncomfortable (i.e. Jesus, King of Kings, etc.) It was a real balancing act. And why didn't we have a Christmas tree? All the other kids did. How come I had to go over to my friend Billy's house to throw tinsel? So, you see it all comes down to jealousy. Who gets the most stuff and who gets shut out. The way of the world. I'm ready for New Year. It's a much more egalitarian holiday.

Tuesday, December 14, 2004

Time Passes - Ready or Not.

Well, Hannukah's almost over. Tonight's the last night. I keep looking for markers, to feel the time passing. It's a different mind set. In normal times I remember feeling concerned about how fast time seems to slip by. A year passing by was nothing at all, and usually, despite all logic, I wanted that time back. It was always painful to watch my children grow up so fast and then quickly become adults with lives of their own. I know it's a cliche, but it happened in the blink of an eye. Our whole lives are like that. One day you're twenty-one and trying to figure out what to do with your life and the next time you look around you're fifty-five and wondering where it all went. So, this year, I guess I have an opportunity to step outside of time rushing by. This year it's all the opposite. Time has slowed down to a crawl. I mark every day's passing, not with joy, but only with the sense of getting one day more completed of my treatment. If I could snap my fingers and be at the end of the treatment, I'd do it in a heartbeat. I want this year to go quickly; I want to stop struggling with these damn side effects. I want to be able to take long walks again and climb stairs without sucking wind. But, life doesn't work that way. No matter what's going on, you've got to bear up under it. And, I believe - feeling quite pollyannish now - that there is something to treasure in even the most difficult of passages. I can be more specific. Not that this is so insightful, but it's something I've often missed. The harder things get, the sweeter the moments of transcendence are. Unless you're bound and determined to suffer all day, every day (as I have allowed myself to do more than once), there have to be times when the suffering lets up, the sun shines in your front window, a friend calls on the phone, you get to laugh at a good joke or cry at a schmaltzy movie. Being sick does not allow one to give up on being a human being. All the same possibilities are there and time keeps on passing quickly by and it's never coming back again. So sick or healthy, I want to take my days one by one and do what I can, when I can to appreciate the life I've got. Is all of this very contradictory? Of course. What did you expect - easy answers?

Monday, December 13, 2004

Darkness and Light

I felt like I hit a wall last week. It wasn't the chemicals or the sickness exactly, but my own attitude toward what is happening to me in this passage. Something shifted; I went into the darkness. I wasn't answering phone calls from friends and canceled those meetings I had previously planned. I told people I was feeling too weak to get out and too dizzy to talk, when they volunteered to come by. But that wasn't the case - yes, I was weak and dizzy, but I've been that way for ten weeks now. What I realized I was up against was my own sense of despair, which seemed to have crept up on me and was beating me down into my sedentary, self-pitying darkness. I've somehow realized right from the start of this treatment that the only way I was going to make it through in one piece was to stay positive. And, believe me, I'm not one who has been inclined in that direction in the past. You'd be more likely to categorize me as a pessimist - if anything can go wrong it will. I've tended to cynicism and skepticism. I'm a city boy, always looking over my shoulder. But this 48 week chemo was not about to respect my self centered drama. I knew I was going to have to climb out of that hole and find ways to be engaged and even to be grateful and maybe even occasionally content. I've actually been working on this transformation for some time. Still, if you woke me in the middle of the night, I'd more likely suspect that the end was near rather than that you wanted to climb in with me and cuddle. Anyway, I was back in that dark place last week. Just sick and tired of being sick and tired and not able to see the end of the road. And you know what? In the end, I decided it was okay. That darkness is where I'm going to be part of the time. There's no way around it. I've never before been through anything that demanded quite so much endurance. And I realized (with the help of my shrink. Oh, you better believe I'm seeing my therapist every week) that there are going to be lots of peaks and valleys in this journey. I can be all the way in the soup one week and back up on top the next. It doesn't just happen though. There is definitely a tendency, which I've heard about from other patients and is well documented in the medical literature, for patients undergoing chemotherapy to slip into despair and take to their beds for the remainder. What I have to keep working on is myself, reaching out, accepting help when I need it, trying to stay engaged with life, trying to be as whole as possible in this fragmented, weird time of my life. All I know is that tonight I'm making latkes for our Hanukkah celebration (the celebration of light) and my daughter and her partner are coming early to help cook and to schmooze. What could be better than that??

Friday, December 10, 2004

I Feel Pretty (Not)

Fridays can be difficult. Well, any day can be difficult, especially when you're scarfing down all these yummy chemicals. Shoot, I forget what it feels like to stand up without getting dizzy or walk up a flight of steps without getting out of breath. I think it felt pretty damn good - I just didn't bother to pay attention to how good. Anyway, no self-pity today. It doesn't serve me well and is probably irritating to others. But back to this Friday thing, this thing I'm already obsessing on, this Friday night shoot 'em up thing, this heart in my mouth, hand shaking, scary, lump in the throat thing. This thing where I load up my syringe with bad ass chemicals and shoot them into my belly. It's almost like the bad old days, except that there's no expectation of joy - or even oblivion. Much the opposite in fact. Once I inject myself on Friday night, all I can do is wait for the inevitable and awful, debilitating side effects to take over. I wait till ten o'clock or so, telling myself that I can just get into bed and fall asleep and thus maybe miss the worst of it. But that hasn't worked yet. Who can fall asleep, thinking about oncoming fevers, chills, and headaches. I know, I know - I said no self-pity. But I'm just telling it like it is. I'm sure there are some brave souls out there, more able to distance themselves from the pain and carry on with their lives. I don't seem to be of that stripe. It's not even noon yet and I'm already anticipating the evening shot. I think I need to work on my sense of humor. I'm sure there are funny things happening here. I told Bev that I'm starting to acquire the chemo-chic look. I'm pale white and I've lost almost twenty pounds. I look like a male Vogue model. Maybe that's funny. Shit, the fact is, the truth is, I'm full of self-pity. And why the fuck not? I deserve to indulge myself - and I think I will, without guilt. Hey, I've never been sick every single day for ten weeks in a row. It's hard, it sucks, I want out. But there're 38 more weeks to go and I ain't about to quit. What else can I say. You're damn straight I feel sorry for myself.

Thursday, December 09, 2004

Empathy

I just got off the phone with Nurse Vicky, who is my case manager at the Hep. C clinic. She calls every week to give me the results of my latest blood tests and to see how I am doing. I look forward to these calls, both because I want to see where all the numbers are and because Vicky seems like a very empathetic person. I know there's a real person speaking to me and someone who seems to understand just how hard this process is for the patients and how disruptive it is to our lives. I'm not sure exactly how it is I know that she gets it, but I always get off the phone feeling like I've been heard, and that she will follow up for me on any questions or concerns I have - and will communicate on my behalf with the doctor and get for me what I need from him. Nurses are like teachers, I think, the work they do is crucial and extremely demanding and thoroughly underappreciated and underpaid. Whereas the docs, for the most part, are distant and pompous and make a fortune. In my increasingly extensive experience of the medical profession, I've also found that most physicians are not, like Vicky, very empathetic at all. They keep their feelings and emotions at a distance. Probably that's the only way they can operate, seeing as many patients as they do - all of whom have their own sad stories. I'm sure it's hard after a while to really listen. You probably see only the disease and not the patient. And you prescribe treatment based on past experience and latest research, but again, not on the personal needs of the patient. I'll admit, right here, that I do have some issues with M.D.'s; my father was one and I know first hand the level of arrogance and conceit some doctors have about their roles. Questioning my father about any medical issue (or any issue at all) was tantamount to heresy - and could be physically dangerous. And I don't think I was alone in my fear and resentment. Doctors (some) tend to get their training confused with omniscience. They need to remember that only God has that ability. I don't expect my doctor to know everything and I can't accept it when he acts like he does. Physicians would be better off paying more attention to how the nurses deal with patients. Maybe medical schools need to offer a course in empathy. It's pretty damn important.

Tuesday, December 07, 2004

Anniversary

Today is December 7th - Pearl Harbor Day, the first night of Hanukkah, and - our first wedding anniversary. A year ago today I certainly never expected that we would be in the situation we are now, nor of course did Bev. People, essential optimists that we are, tend not to believe that bad things can happen to us - we admit that they happen to other people, sometimes even friends and family, but it's highly unlikely they will strike us. We're bullet-proof, we think. Well, I'm here to tell you ---.
It's almost like we've had two different marriages so far - and in less than a year. The first eight months we were full of excitement and plans; hanging out, going to dinner, movies, parties. Discovering each other and our life together and how we wanted to live it. Then came the realization that this was not going to be life as usual. Even as I sit here typing away, I'm feeling increasingly woozy, not at all sure I can even last another ten minutes. I know Beverly didn't sign up to be a caretaker when she said, I do - or maybe she did. In sickness and in health and all that. And I've got to believe that were our situations reversed I would be trying to do for her all that she does for me - though some days I wonder if I could be as giving and selfless. And it's not like I didn't tell my sweet wife well before we were married that I had Hepatitis C, but I didn't tell her it had reached a critical stage. I didn't know. I told Bev and myself that my disease was in remission. That's what I thought was true. I didn't have any clear symptoms and I felt pretty healthy and vigorous. Went to the gym five days a week, did yoga, and dance classes and rode my bike and all that yuppie stuff that kind of makes us feel above the fray. But I was far from invincible and when one of my yearly blood tests came back with an elevated reading, it was time for a new biopsy, which indicated I was a stage four hep c patient, meaning my liver was essentially near the end of its useful functioning and left untreated would begin to decompensate - the gastroenterologist's term. You don't want to know all the awful ways it can begin to "decompensate." We looked for every way out we could imagine, but it was soon clear that we'd have to begin this almost year-long, tortuous treatment. We didn't know quite what we were signing up for - and are still discovering all the ramifications. It's kind of like signing up for the Spanish Inquisition. But here we are - getting through it as best we can, living with disaster, but living. I couldn't ask for a better partner in all this and I don't doubt for a second that we will come out of this stronger, if a bit bruised.

Monday, December 06, 2004

This Too Shall Pass

One more week-end down, one more week (number 9) underway. Though this seems endless, a medieval cure at best, I'm proud of making it through this far. Two months is something - 11 months, though it often seems almost impossible, will be doable, I think. It's taken me this long to get to that realization. Up till now, I've doubted I could do it, been mostly scared if you want to know the truth, which I imagine you do. Otherwise, why bother with this. It is the almost endlessness of this treatment that gets to me the most. I can stand being sick, sort of, but what do you do when the sickness never ends. It changes from day to day - different symptoms at different times, but there's never a day or an hour when I can just relax and feel good, or uninfected. I said when I started this process that I would have to look at it like it was my job for the year. Undergoing chemotherapy is what I have to do, to figure out, to show up for. But, you know, even the shittiest job gives you a day off now and again.
Bev left me a card this morning (we're big on cards) before she left for her company meeting in Minneapolis, that said on the front "This Too Shall Pass" which felt kind of amazing since it was the expression my mother used all the time to apply to most everything that wasn't to her liking. She often said it to me when I felt sick or sad or just wanted to cut school for the day. Images of my Mom came flooding back to me on the wings of that card. She was the one who provided comfort, she was the one who made me believe that things actually would work out if I just kept trying. Of course, there were times when she was meaner than that, not at all comforting, more of an attacking force. But I choose not to dwell on that mother aspect these hard days. Now, almost every day, I have a feeling that I want to talk to my mother and usually move to pick up the phone to call her, before I realize that she's been dead for four years now. But still I feel she's with me. She's ready to provide the comfort I need, listen to my complaints, make me a bowl of chicken soup. Every boy needs his mother - especially when he's feeling sick.

Friday, December 03, 2004

To Sleep, Perchance to - you know

What is better in this world than a good night's sleep? I'm not talking six or seven hours here. I mean the real thing - ten hours in a deep, enveloping, undisturbed slumber. The kind of sleep where you wake up completely refreshed and energized and ready to take on the world. Kids sleep like that. If my situation is at all typical of people my age, we don't do so well at sleep anymore. I know if I get six hours in, it feels like a triumph. And it's not unusual (at all) for me to sleep less than four hours in a night. Tossing and turning takes up most of the evening, with another few hours dedicated to existential musings. Now add chemotherapy drugs into that already confused brain of mine and my sleep becomes even more problematical. I'm beginning to feel like I'll never have one of those wonderful, deep, dream filled sleeps again. And speaking of dreams (isn't that a song title?), I find that my dreams these days, when I'm lucky enough to have one or remember one are also more troubled, or more disturbing than was usual. It's hard to distinguish dream from drug hallucination. As I finished a chapter in a book I was reading and let the volume slip to the floor in hopes of falling asleep, I instead found myself within the novel. I don't mean I was dreaming about the book, instead I completely slipped into the "reality" of that story. I was a character in it, dressed in the eighteenth century style where the book was set and living in a damp basement where Benjamin Weaver, the character I had become, lived. I was very frightened by the time I was able to extricate myself from it - and believe me, not at all rested.
What are dreams anyway? And where are we when we enter one? I think it goes deeper than simply the mind's processing bits and pieces of our everyday reality. I think there's a separate reality out there, a dream reality, that is very vital to our ongoing mental stability. I know I feel more complete somehow after dreaming; and considerably diminished when I go too long without access to that other world. I feel like I've missed out on some important and ongoing conversation. A person, me in this case, can't very well keep on without enough sleep, without dreaming. I don't know quite what to do about it. More drugs? Maybe. I'd do anything at this point. But what's the quality of sleep that you get when you take sleeping pills? I make up (since I haven't used them before) that you're just knocked out. And knocked out is not the same as asleep. I think what I'll do is stop thinking about it now. That certainly never seems to help and leads unfortunately to obsession. The surest way I know not to get to sleep is to keep thinking how you can't get to sleep. So, enough of this. It'll come, it has to eventually. Doesn't it?

Thursday, December 02, 2004

If I Ain't Depressed, What Am I?

I refuse to accept the idea that I am depressed. It's one of the few "side" effects of this chemotherapy that I have not been afflicted by - at least not yet, at least I don't think so. It seems sometimes like the doctors and case worker nurses want me to be depressed - it is the expectation. Right at the beginning of my treatment they wanted me on Prozac. But I just can't accept the terminology or the diagnosis of depression. I'm sick, I'm dizzy, I've lost my appetite, and I could go on. But does that make me depressed? It could, that's for sure, but it hasn't yet. It (my symptoms) are what is real for me right now. I'm not imagining them. And when I have a hard time sleeping or feel like crying, there are damn good reasons for that. I'm responding to something real in my world. It feels pretty normal. I've certainly been depressed in my life - and it was hell. I couldn't see any way out, didn't even have the energy to imagine a way out. Everything was dark and the only thing I could imagine doing was staying in bed with the covers pulled over my head. I'm not there at all now. I'm much healthier than that - even as I feel the weakest physically I've ever felt in my life.
So, back off. Don't try to make me depressed and keep your anti-depressants. I want to feel everything I feel - the good, the bad and the ugly. Hey, I know anti-depressants can be lifesavers in certain situations; If you need them, go for it, by all means. It's not my time. I want my grief and I want my pain, and I want my moments of transcendence. All pain is not neurotic, you know.

Wednesday, December 01, 2004

Getting Sick, Getting Well

I almost didn't write a post today. Then I saw that someone had added a comment to my last posting - someone I didn't know who had come across the blog and seemed to like it and looked forward to reading new postings each day and said some other nice things, which made me feel very good. So, of course now, I want to make sure I get something in here every day. Actually, this whole blog thing is more for me than anyone else - of course. It makes me feel good to write every day, makes me feel like I have something to do other than monitor my boring symptoms. It feels like a job, the best kind of job there is - except that there's no money involved. I don't think I've ever truly believed I would make a financial living as a writer. I've made some money along the way and had some recognition, but I don't think that is ever the reason why people feel compelled to write. Self expression, in whatever form it takes, is good for the soul. Especially for us basically introverted types. Art allows me to say the things that make me feel like I'm part of a bigger experience than my own. I guess if you're Stephen King, you get to do it for money, but I would bet that King too writes for other reasons.
I've been thinking a lot these days about my father. He's been dead for fifteen years now, so I was somewhat taken aback to find his influence and power still so present in my consciousness. My dad was a doctor, a general practitioner, so it's not that unusual that I would think of him in my time of extended sickness and fragility. But it's not like he was a great comfort to me as a kid when I was sick or hurt. Much the opposite, in fact, was true. I could pretty much count on him not being there for me when it came to aid and comfort. For some unfathomable reason (at least unfathomable to me), my father didn't seem to believe in the efficacy of medicine or kindness or care to help people in need. When I would tell him that I felt sick, his response would almost always be, "Don't worry, you'll get better." Which, in the end, was true. I did get better - but, you know, that wasn't really what I was asking him for. I wanted him to care. I wanted him to tell me something that would make me feel safe. I wanted him to show me he cared about me, that he loved me. I think that's what we all need and want when we're sick. Yes, thank god for modern medicine. It's potentially saving my life. I think it will. But I almost never see my physician. He's too busy with other more important matters to deal with actual people. That's what nurses are for. I don't know where I'm going with all this. And don't even get me started on how I forever disappointed my parents by not becoming a doctor myself. It's a twisted tale, and doctors and family and being sick and getting well is much on my mind these days.