racing blindly towards an immutable future

immutablefuture @ 2004-08-15T02:06:00

2004-08-15T09:06:45Z

I went into the hospital last Sunday with an infected line. I'd known about the infection for several days, and tried to report it to my doctors, but they shrugged it off and told me it was probably nothing. Only when I went in for a platelet transfusion did a nurse happen to notice, and suddenly I'm on IV antibiotics at home and everybody's afraid I'll develop sepsis (a 60% lethal infection in the blood).

Monday morning the doctors strutted in, usual fashion, and told me the line would have to come out. I wasn't thrilled with the idea, I'd heard what went into removing one of those lines, but I wasn't thrilled with sepsis either, so I willingly agreed. My advanced studies told me that what they'd do is numb up my chest with local anesthesia, then firmly grab ahold of the line and pull on it.

You have to understand, for months and months on end there has been a certain amount of time set aside everyday to imagining what it would be like for that tube to be pulled on. I would inadvertantly visualize the line catching, or someone grabbing it, and the firm tug on my chest, on my heart. I would lay there and writhe in imagined agony, feeling every inch slide from my chest painfully, slow in that way that time slows to a crawl during the most terrible moments. And now they were going to do that.

The surgeons came in later that day, a young one and a middle aged one who was obviously his teacher. They joked with one another and talked while they finished masking, gloving, and suiting up, then turned their attention on me. It started with a large needle of lydocain. Shots here and there, peppered all around and directly into my infected wound, at least seven or eight. The first several were bad, but any that went directly into the infected tissue around the line were ~~excrutiating~~ worse (got to save that word) and no amount of lydocain made them disappear. All the shots bled, for a couple of minutes my breast was bloodied by a half dozen tiny wells.

Then the pulling started. No matter how much lydocain they gave, I could feel the pulling. The pain with the pulls was the sort you literally see, where you slam your eyes shut and artifacts of lightning explode across the blackness. Watching my own personal fireworks display synch up with the agonizing pulls, yank after failed yank, I heard the older surgeon ask for the spreader. Soon they'd shoved a spreader in the space between my skin and the plastic, and begun tearing the wound open as widely as possible so they could resume their pulling. Excrutiating is the word I save for the spreader. The lydocain was worthless. I could feel it all.

Unfortunately, in a display of amazing resilience, the line still refused to give way. The older surgeon concluded that the "cuff" must be deeper than they'd thought and decided to make an incision in my chest. Soon I was watching them using a scalpel to dice open my chest, about an inch long or so along the skin above the line. Have you ever watched a person cutting your skin open? Seen the blood pour along the edges of someone else's blade as they slowly and deliberately open you up? It's extremely surreal.

The second most painful part, behind the use of the spreader (which was ongoing almost the entire time), was once they had the incision open. In order to find this cuff, they had to stick tweezers in the incision and fish around. I am not exaggerating when I say it took ten or fifteen minutes of this digging inside my chest with tweezers and scissors to grab hold of the cuff, which they then proceeded to drag backward through an incision which was smaller than the cuff itself. It came out with a firm backward pop and a stifled gasping cry on my part.

Again, the lydocain was almost useless, I could feel almost everything they did on my chest, despite receiving numerous reapplications of the drug per my pointless requests.

Once the cuff was out, both ends of the line were hanging freely from me through the two separate holes. They proceeded to cut the line in half at the new incision, then in two final displays of incredible lightning, pull free the two separate ends on the tubing and it was done. They patched and stitched me up, congratulated one another on their fine work, and left the room with hardly a word to me.

I just rolled onto my side and cried. Cried and cried, deep wracking sobs. Not pain, not that, something else that I still can't place. The horror and the violation of it all. It was so traumatic. I am so tired of these days.

I took pictures the entire time. They thought I was insane, but I don't care. Some of them are blurry. I hope you'll understand, my hand was shaking violently most of the time, badly enough when the spreader was in that you will see no pictures of it, they all blurred too badly.

"all better"

immutablefuture @ 2004-07-19T08:32:00

2004-07-19T15:32:15Z

I am no longer neutropenic. My hair is starting to fall out again. It is everywhere this time, not just my head. I have no sex drive whatsoever. I used to be happy with no less than once a day, but there's been nothing in months. I can't feel my fingertips now. Food still tastes like nothing. Prednisone is tapering away. Weight is falling fast because I have no appetite. Lost 6 lbs in two days. Petechi may be developing along my leg. I have upped my sleep med dose to "keep eating pills until you pass out." For last night/today this consists of five ambiens, two temazepams, and an ativan but I am not asleep yet, just dizzy and shaking. My potassium is low. My body is cramping everywhere and often. Chemo in one week.

immutablefuture @ 2004-07-13T17:42:00

2004-07-14T00:42:45Z

Yesterday, my sense of taste went out pretty steeply. Everything seems bland now, eating spaghetti is like licking a cube of butter, and I dare not try the butter itself. There's no hiding from one's own sense of taste, it's ruined but still there. Even the roof of my mouth has its own unique flavor, if a dozen small ridges and crevasses can be described as a flavor. Tasting by texture is an experiment in bending your sanity, similar enough to actual taste that you have to question whether ridges are now a flavor or a feeling mapped to your brain by your tongue. I still can't tell.

Because senses like to flee in pairs, my taste has run away with half the feeling in my fingers. The deadening of the tips is gradual, at first they feel just a bit heavier than normal, then like nothing much at all. Soon they will greet me with a sensation that combines erratic pain and numbness, affording no room for the cool smooth feel of metal or the roughly cut edge of wooden grain.

My hair remains intact, but it is due to begin twisting away from my scalp any day now. Ever since induction, I have been in the habit of unconsciously running my fingers through it, weaving and pressing through the fine strands until they find a suitable patch around which they can pinch and pull. I then lower my forefinger and thumb to the horizon of my vision and study them indifferently. Every time I do this I expect to find the hair has torn away without effort, its roots exerting no more hold than a dandelion does over its silvery seeds. Something about having one's hair slide away from its skin with so little provokation is completely dehumanizing. Though that is only one of many such memories, it is the one my hands choose to recreate when left idle long enough. It's as though they are trying to drag that memory back into reality so that I can be privately horrified again. I am expecting this any day.

immutablefuture @ 2004-07-13T02:59:00

2004-07-13T09:59:48Z

Went up to SCCA today to round out this cycle with one more dose of vincristine. Vincristine is not such a bad one to receive, immediate nausea is pretty minimal, but about a month after it enters your system you lose the feeling in your fingertips and sometimes toes. It's a painful pins-and-needles sensation for about two months after that, with a minor chance of that sensation lasting indefinitely. So, yay Vincristine, you are loved today, but I will loathe you in a couple of weeks.

They took my blood before I met with the doctor, as is common practice with these folk. Bigger news is that my sister got herself HLA-typed today, a process which consists of having a good ten vials of blood taken. HLA-typing is the process through which you are matched as a potential bone marrow donor. Paige represents a 25% chance of being a match (in fact, a better match than any other person could potentially be, were that the case), so fingers are crossed, but my back isn't to the wall quite yet. A transplant only goes down if chemo fails, 60% likely they say, and even then the doctor tells me I have a "great" chance of matching up with someone from the national registry (about 60%; you tell me how great that is when it represents your last chance at a last chance, Doc). Paige isn't big on having her blood drawn, she tends to pass out a bit, so she was a trooper to give up ten vials today.

Went upstairs and met with the doctor once that was through. He didn't have any real big news for me. My next cycle is about two weeks out, it'll be four or five days inpatient on some drugs I've had before, the cycle with the eyedrops and the cold sweats. I guess bigger news would be the single immature cell they drew out of my blood. Nothing to worry about, he says, it's probably just a result of something-or-other, some lengthy doctor talk, nothing to worry about. That didn't stop him from drawing more blood so that they could run some more tests, though, just for good measure (nothing to worry about). He doesn't actually say the alternative, a good oncologist uses the word relapse as little as possible I'm sure, but I am aware of what that lone cell might represent. They'll get back to me Wednesday. Nothing to worry about.

Continuing my ascent through the building, I made my way up another floor for the actual chemo. Wound up with the same nurse I had a couple of weeks ago, the sharp and funny brown-haired Lisa (for whom I already wrote a moderate description before; was that destroyed?). Lisa not only impresses me with her quick tongue but also her excellent memory, picking up conversations from weeks earlier with apparent ease. I like her, so I forgive her for shooting me full of saline and chemo, but just barely. Once that was through, I was done with SCCA for the day and we took off.

My weight is up. I could see the changes in my appearance as much as a week ago, and it has gotten constantly worse since then. You can't help but notice a gain of 15 pounds across two weeks of studying your naked form in a mirror. I'm a pretty gross distortion of my former self, the prednisone makes sure that those pounds are dispersed in the most disgusting way it knows how, mostly in the distention of my stomach and the rounding of my face. I bear a good inch and a half long verticle stretch mark along my side from the first regimen of prednisone. Between the scars, the plastic body mods, the weight, and my own natural graces, I'm attractive stuff. Last time I could afford to put on lots of weight fast because I'd been low before, and I still wound up just under ten pounds over my initial weight. I'm not sure how I'll lose this excess now if my natural metabolism doesn't handle it itself, fatigue and hospital beds don't leave much in the way of exercise. At least I start tapering the prednisone tomorrow.

immutablefuture @ 2004-07-12T14:13:00

2004-07-12T21:13:49Z

Meet Dr. Stephen Petersdorf. We like him. He's my head oncologist, the one constantly overseeing every aspect of my treatment, even though he never has any physical involvement with it. He's like an invisible watchdog, some guiding spirit that is constantly making decisions and holding meetings with the lesser mortals who enact and enforce his will. I never even met the man until after induction, but when I did he was intimately familiar with all the treatments and doctors I'd interacted with during that time. He's got a good sense of humor, a very wry man, and he always gives me all the information I need and want without any of the runaround other doctors sometimes put me through.

the hands i have placed my life in

immutablefuture @ 2004-07-12T01:03:00

2004-07-12T08:03:31Z

Getting drugged out on Ambien is like the sweetest thing. It only works like half the time, but afterwards I'll find myself experiencing everything like its so surreal. Even the smallest things are surreal. Typing across the keyboard or shifting the weight of my head around both feel surreal. My vision blurs lines together and the music controls everything, everything. It's like being in a body that isn't really my own, the gestures are delayed, clumsy, never feel quite like they should. I enjoy it, there's an overwhelmingly relaxing, euphoric sense to it all.

immutablefuture @ 2004-07-11T02:42:00

2004-07-11T09:43:02Z

The agonizing ache in my lower back was gone when I woke up this morning, and didn't come back all day. The blood labs called; I'm highly neutropenic, which I knew. More surprising is that my hematocrit (a measure of red blood) is still as high as 36. I expected it to be much lower, dropping from chemo, causing the heavy fatigue that's been hanging over me the last couple of days, but now I don't know what that's from. Even more surprising is that my potassium levels are back up to a practically normal level. Evidently all those bananas finally paid off. But now I don't understand why my back had been hurting so badly (how could it be something other than kidney failure? it's been weeks since something went seriously wrong). I hope it's treatment related, and not the constant progressive failing of my back.

Something I should have mentioned here a week ago: I have beaten mucasitis. Its window has come and gone without a single sore. They told me it would probably be as bad as before and would heal even more slowly, but beyond the minor threats of thickened saliva and mild discomfort it never set it. It makes me want to throw my head back and scream at The Divine Powers That Be in raw spite, shout that I can defy their fucking trials and ordeals. I would, but you know... they'd punish me. Probably with more mucasitis.

Another round of vincristine and a meeting with the doctor coming on Monday. I owe this journal at least two back updates, probably more, but let's not kid ourselves. Maybe they'll go up in the next day or so.

immutablefuture @ 2004-07-10T02:33:00

2004-07-10T09:32:48Z

My back, agh, my back hurts so badly. It's not gotten better, it's worse. This pain is new and unique. My kidneys are failing, I know it, I know it because it's been too long since I almost died and my potassium is low and everything else in my life is wrong so it all makes sense. Tomorrow I will call the doctor, and he will bring me to the hospital, and they will give me the news, "Your kidneys are damaged beyond repair" he will say, and they will set me up in the hospital until I die tragically and unexpectedly in the middle of the night, alone in the same miserable hospital bed that I promised would be my deathbed during induction.

immutablefuture @ 2004-07-09T14:34:00

2004-07-09T21:34:49Z

I'm so tired already. I've only been awake for less than four hours, slept the nine prior to that, and I'm so drained I can barely bring myself to move. Laying in bed reading, I slowly degenerated to the point of being sprawled out on my stomach, head resting on its side across my pillow, scanning the text lazily with my eyes, which eventually I noticed had closed themselves. Something about this overwhelming fatigue scares me. An exhaustion that's beyond my capacity to ignore makes me afraid, makes me feel like there is some sort of failing in my body which is beyond my control, not quite like the others. It's like my body is shutting down, giving up. I feel if I were to yield to sleep now, I might not ever wake up. Melodramatic though it might sound, I can't shake it.

My lower back has been in tremendous pain since yesterday afternoon. I normally have a pretty poor back anyway, random aches and pains constantly maintained through twisting and cracking, but this is a different sort of pain, one I can't seem to alleviate. I'd been so sure it was like the other aches, that it'd be gone by morning, but it was no less intense when I woke up today. I'm not sure if it is related to treatment. Sketchy internet research hasn't suggested any sort of connections, and my back normally hurts anyway. Maybe this is just the straight and natural progression of a failing back. Maybe I am just the oldest twenty year old alive. Somehow, I doubt it.

The pain actually spread its palette sometime overnight, into my hips and upper thighs as well. It's not the sort of overexertion sensation from before, it's a more genuine ache.

My potassium levels are sliding from low to dangerously low. They've been down since not long after the start of this chemo session a week and a half ago. They wanted to give it to me IV last Monday but I refused and elected for pills, not wanting the extra three hours trapped in SCCA. So I've been taking pills and forcing down potassium rich foods (I really dislike bananas) everyday, but the results just keep coming back lower. I can feel the effects, too. This morning I woke up amidst agonizing leg cramps four times in a span of three hours. Maybe this ties into the fatigue, or the pain. I don't know anymore. But if my potassium gets much lower, I'm at serious risk for organ damage.

More later.

immutablefuture @ 2004-07-05T02:34:00

2004-07-05T09:34:04Z

I have a fucking sliver in my finger. A tiny, miniscule, invisible splinter, so painless you'd dismiss it in a second. Got it sometime tonight.

I am nearly neutropenic. This tiny grain of wood is all it takes.

immutablefuture @ 2004-07-01T12:00:00

2004-07-04T05:30:59Z

Fuck fucking fuck motherfuck, I wrote this entry for a full day, hit post, and my lj utility crashed for absolutely no reason. Fuck.

Not rewriting a page of text right now. Tomorrow.

immutablefuture @ 2004-07-02T12:00:00

2004-07-03T06:55:20Z

My head. Oh lord, my head. Went and saw Spiderman2 at the theatre tonight, but within a half hour after the movie, my head was throbbing. Immense, constant pressure is built up along this huge front, swelling behind my forehead, hammering away at the backs of my eyes. This pain is so intense. I had headaches like this during induction, right before the worse headaches. I used to lie in bed for hours every day, and just hold my skull and moan quietly. The slightest slivers of light would make me cringe and groan in pain. No medication helped. They didn't know why I had them. They got better, after a week or so's time, but not before they got worse.

This darkness is a mixed blessing. The light burns so badly, so the dark is good. But time passes so slowly in the dark. Every second is easily ten, everything crawls. Fuck, this is induction again. This pain, this silent crumpling alone in the pitch dark, I remember this. It gets worse than this, I know it does, soon mucasitis and nausea too. More happened today worth noting, and yesterday, and before, but right now I need to get away from this screen to try and extinguish this blaze behind my eyes. I have to get from today to tomorrow, and somehow to the day after that, because I remember, the mornings were always the worst.

***

Had to get up around 8:00a to get to the blood lab. Routine checks on my counts and INR, but both were set to be total wild cards, since Julie tried to end me with a high INR a few days ago and the chemo is bound to start me on the downward spiral into neutropenia soon. Got the results in the afternoon. My INR was a 1.7, which surprises my dear Julie. She thought it would be over the 3.0 mark still, but don't worry, I still don't question her capacity to manage my medication or anything. Because of the miscalculated drop, I get to start giving myself injections of Lovenox again (an alternate blood thinner) until it climbs back up. They'll check Monday when I go for vincristine.

My blood counts came back a little low, but not neutropenia-low, which is something I'm used to. They'll fall soon.

There was a nice surprise last night amidst the head-splitting agony. When I was rifling through old pills (searching desperately for the painkillers), I accidentally discovered a full bottle of not 5, but full 10mg Ambien pills. Insurance stopped covering them a few weeks ago, and Temazepam, which was prescribed as the stand in sleeping pill, hadn't been working at all. Now I can start sleeping again, thank God.

immutablefuture @ 2004-06-30T12:00:00

2004-07-03T06:41:20Z

I notice it as soon as I wake up. Not only are my thighs sore, but now my entire legs and my upper arms as well. They all feel like they were strained in a workout, but I'm sure that couldn't be the case. Must be the chemo.

Today was day three at SCCA. Despite having two pushes of daunorubicen in me, I don't feel too overly nauseated, just sick from prednisone. The nurse is friendly enough, and jokes around with me. I like the nurses who don't take things too seriously, since I tend to mask my quiet horror behind cheap humor whenever possible. She takes me to a double room that has had a bed removed and the dividing curtain pulled- essentially a double-sized single. I would have been more enthused about it if I hadn't known they were giving it to me so they could give me interthecal methotrexate. That means they take a syringe, and shoot a chemo drug directly into the cerebral-spinal fluid of my head. I have done this about five or six times, and the result has always been immediate uncontrollable vomiting for at least an hour.

Knowing that was on my platter, the daunorubicen seemed like a pretty harmless push. More immediate concerns and whatnot. Not long after, my pharmacist Julie and my head oncologist Dr. Petersdorf came into my room. He was slated to administer the methotrexate himself in hopes that he would do a better job than those before him, and I would be less sick, but I reserved little hope for the man. Which was a shame, I mused to myself weeks in advance, because he has never had to actually perform any procedures on me before and as such he was the only doctor I didn't secretly and seethingly hate for poisoning me one way or another. Genuinely liked the man.

And I got to continue liking him, because there was no way they were willing to puncture my skull with a needle today. No sir. Apparently Julie fucked up. Some interaction between the daunorubicen and the coumadin (blood thinner) has sent my INR level (blood thinness) skyrocketing from the acceptable 2.0-3.0 range all the way up to 9.3. My blood is so thin, there's no way I'll get a clot! In fact, I could very easily start to bleed in my brain and die for no apparent reason, let alone with needles poking around! Thank you, Julie!

The procedure was delayed to a time indefinite (my guess is next Monday). The new plan was to hook me to a couple of bags of Fresh Frozen Plasma (FFP) and feed me a couple of vitamin K pills. Both these things are helpful in lowering an INR rating, but neither is terribly quick (they still expect me to be high at my next check on Friday), and until I'm below 3.0 any bleeding, external or otherwise, is extremely dangerous. The upside is that I was encouraged to start eating the foods forbidden by coumadin- those high in vitamin K- as much and often as I would like. So I ate some guacamole, and it was good.

Urine continued to be pink, which is fine. Hopefully normal by tomorrow. I am constantly starving, while eating four or five meals a day.

immutablefuture @ 2004-06-28T12:00:00

2004-07-02T00:10:02Z

Bloodwork was taken at SCCA (which is common practice for trips up to there). No INR check, so I don't know how thin my blood is, but the CBC clears me for all the vital numbers, including the white cell count which was too low to begin another session last week.

Today was my first day in a series of three taking in the chemo drug Daunorubicen through an outpatient session. This red toxin was the source of a lot of misery for me during induction; it causes nausea, mucasitis, hair loss, headache (?), lord knows what else. The effects are cumulative and take a day to go into full effect; by tomorrow I will be feeling the effects of one dose, by Thursday, it should be three times as bad. A friendly and conversational nurse administered my dose (took note to shield me from potential chemo leakage as well as herself, which is a rarity amongst nurses it seems).

After the Daunorubicen, she also helped me to a few syringes of Vincristine. I got it today, and will receive more each Monday for the next two weeks. I can't remember what terrible immediate effects this drug may or may not have, but I know from induction that about a month after it is administered, I will lose feeling in my fingers and possibly toes. The sensation is something like the pin-and-needles effect of one's hand falling asleep, only it runs around the clock for several months, and it hurts worse. There is a chance of the effect becoming permanent; some sources are more dismissive than others about the possibility, so I never know what to think, but I did get my hands back to normal from the induction dose.

Prednisone went back into the mix today, too. I take an amazing(?) 120mg of the steroid per day. It has a lot of unpleasant effects, the most immediate of which involving my appetite. The sensation is difficult to describe, but basically your stomach becomes unable to distinguish the feelings of nausea, hunger, and fullness from one another; at times, this means I will think that I am hungry and shovel down a huge meal, only to vomit it all back up because I was actually feeling sick. At others, I will eat and eat, continuing to feel hungry, until suddenly I keel over in pain from a grossly overloaded stomach. No delay on this little wonder drug, either. Within an hour of taking the pills, I can feel these sensations setting up in my stomach.

My urine is a bright, translucent pink. This is standard with Daunorubicen, and somewhat disorienting. Should last a little over a day per dose, I think. Regardless, it is nothing when I had blood in my urine before induction. Or maybe urine in my blood, or maybe not even that; I was for all intents and purposes pissing blood at that point. It probably doesn't sound like much, and it didn't hurt, but it's a huge pyschological trauma to watch.

Back at home, I don't really feel nauseated yet, but I have also been given Zofran and that steroid that starts with 'D' to help combat such sensations. The prednisone is definitely in full effect; my appetite is probably twice what it usually is, and I feel unpleasantly sick the entire time. Three more weeks of the stuff remain. Tomorrow I'll wake up early and go to Seattle again. Drug myself out with Temazepam and some Ativan (two birds, one stone- sleep and nausea).

vincristine