LEUKEMIA IS ANNOYING

Still at home. On lots of Dilaudid, Oxycontin...trying to get some strength and energy back so that I can work on my CD.

The Docs finally told me there was nothing more they could do for me. Three courses of chemo did nothing to slow the progression of the Leukemia, so I am at home with my other half, my kitties, and my stuff. I'm in pre-hospice, which means that they will continue to give me antibiotics and blood products, but pursue no extreme rescue attempts. I am so weak from 2 months of being in bed that I can't really walk without assistance. I can't climb stairs, yatta yatta yatta.

But in some weird way being home is the best way of going through this. The cats immediately understood that body contact was essential for me. From the moment Scriabin and David carried me up the three flights of stairs and stood somewhat startled as they watched me whimper and retch and puke from the pain. The cats, however, knew that body contact of the human-feline type was needed. From their perspective, I went away in horrible pain, and sometime later came back sick and crying, and if you are a cat and your cat friend is unhappy, you cuddle, you groom, you take turns taking guard, you make your little cheery cat noises.

I've had to go through the horror of being manually carried down three flights of stairs on a chair just to get to the street level.

My whole day consists of eating pills: antibiotics, anti-fungals, antivirals, Ativan, Diluadid, oxycontin...Every other day I have to go get a blood transfusion. Hopefully my immune system will come up a little bit and I can go outside...

I've spent at least 20 minutes trying of trying to find how to get on this wepabe. My brain is fried. I just wanted to update that today I start the last awailable regimen.

Bon Voyage, Now Yoyager!

Over the past few days, I have noticed that my cognitive abilities have been greatly impaired. I can't remember from one sentence to the next. I am still in the hospital, which is no doubt adding to the loss of my mental faculties on top of the oxycodone, dilaudid, marinol and plethora of other drugs fed into me on a daily basis. The little fish dangling in front of me is the new triple combination of drugs that can't begin until Tuesday, due to bureaucratic idiocy. Supposedly this combination has never been used anywhere before. I am intrigued by trying something that no one else has ever tried, because it supports my theory in a completely non-scientific way that I am not from here. The best egg heads in the leukemia world, the commissars of clown college have gotten together and come up with this combination. I'm sure after my demise and subsequent memorials including torch-light parades and the wanton destruction of buildings, those egg heads will be off on a tropical island with leis around their necks, drinking alcoholic beverages out of a straw, saying "that was a weird one, wasn't it". Meanwhile my album will have come out and they will then come to truly know, how those inopportune vacations, avoided phone calls, lost blood samples and bone narrow biopsies contributed to the end of the world.

Wow. as previously mentioned, I had a in-depth conversation with my primary oncologist about my gut instinct is to forget about this lofty goal of a blood cord transplant because realistically my Leukemia is still out of control, they don't have any reasonable gameplan to rectify it, blah blah blah, so I suggested we change our focus to getting me a few good weeks where I could go home, bolstered by antibiotics, hydrea, and whatever, play with my cats, finish my album, sort through my stuff, and avond a cold death in Minnesota.

Now all of the doctors are much more touchy-feely. They sit next to me instead of looming at the foot of my bed.

On top of everything else I have C-Diff, which is a nasty bacteria that takes over your gut when the antibiotics kill off everything else...

Bad past few days. Feeling sick, not eating much. They gave me Marinol, that medicinal marijuana, to stimulate my appetite. All it did was make the TV look brighter, the little speakers I use for my ipod sound like huge ass high end speakers, and give me a decent buzz. Didn't make me hungry, didn't help with nausea...they keep trying to give it to me and I keep refusing it. This is the last place I want to be high in.

My counts are climbing back up, so we're refocusing the goal from "going to Minneapolis to get a double cord blood transplant" to "getting me stable enough to have a few weeks or months at home".

The Dasatinib seems to be keeping the white counts on the low range (btw:1-2) but my ANC is nowhere near being useful. I have no idea where my blast count is in my bone marrow but I doubt that it is anywhere near what a clinical practice would consider "in remission". I feel this Dasatinib is just a red herring.

I've been thinking a lot about what to do next, although unless something dramatically favorable happens, there may not be much of a choice. I do know that I'm getting less and less inclined to do the whole Minnesota thing. Even if they agreed to do it, the odds of it succeeding completely are miniscule; the odds of it working for even a short amount of time are small; The odds of long-term bad side-effects or adverse reactions are high;The oddsos of the procedure killing me are 25%. The odds of post-procedure infection killing me are 50%. The odds of Leukemia coming back within 6 months are 50%...I also have certain things that might cause additional issues; brochitis obliterans due to my asthma and general lung weakness, lung issues, liver vulnerability, I'm at the top age that they take patients (45).

I don't think I want to move away from my cats, my house and my friends to die in winter in Minnesota. I believe in fighting but I don't belive in thrashing.

Right now, I'm still suffering from Long bone pain in my arms and legs. Taking oxycodone for that. Also suffering from nausea, so I'm taking Atavan. Both make me sleepy, so all I do is sleep 4 or 5 hours; if it's time for Oxycodone I take one or if I wake up nauseus I eat the atavan.

Not eating much. Canned peaches in heavy Syrup. Ice Cream. Laughing Cow Cheese. Lemon sorbet.

Hair is all out except for about 50 mutant strands that won't leave. My tip of my nose is all read and swollen. I look like a derelick clown...

I had a dream that we went to sell our house on 123rd street in North Miami. We kept a giraffe in the backyard because he liked to eat the mangos. We put a sign up, "House for sale by Owner, Giraffe Included"

Somebody shot up the sign and the giraffe.

Friends and acquaintences are constantly asking what causes Leukemia. The truth is, nothing definite. Exposure to Benzene can cause it, but not in everyone. Various other chemicals can cause it, but not consistantly. Mine probably came from my Essential Thrombocytosis which might have been caused by all of the Alchemical experimentation I did in Hollywood in 1986, fueled by that Government $$$ that Eric Rome, a.k.a. Mr. X brought on the scene. He showed up shortly after I procured the basement of the Havenhurst Apartments on 1861 Whitley Ave. He was a well spoken blackman with a flair for chemistry, but nothing to his story ever added up. He always had cash, but always had strange "partners" around. It became clear that his singular goal was to ingratiate himself into the Hollywood Occult Tweaker scene. That's where the brains where. Since I was allowing these types to tweak and crash there, my place was Ground Zero. I was also friends with a lot of the other musician tweaks, tweaks being methadrine and methamphetamine users. There was a whole subculture with strange ways of thinking and seeing and body language. Not the ugly perverse thing it became in the hands of the gay AIDS crews.

The stuff going on in Hollywood was going with Mensa allegedly looking on. The tweaks that were around long enough eventually got picked up and given access to a warm batc, cash, and food if they agreed to take what appeared to be to me I.Q. tests. It's no secret that the Armed Services did testing and concluded that Amphetamine usage boosted I.Q., so I'm guessing that there were Black Ops assigned to this study, perhaps desguised as Mensa, as they identified themselves as such. One of the more interesting aspects of it was that the individual that the tweaks claimed administered it had no irises; that is, his eyes had no color, they were all black with a little white rim. One kid said he asked about it and was told that "potable gold" was involved.

More about that later. I'm so wiped by the Oxycdone and Atavan I can only write small amounts.

I am a duckling following its mother and some kid grabs me and sticks a big wad of Double Bubble on the top of my head. He and his friends thing it's funny; they drop me to the ground to rejoin my mamily. The gum hardens. It hurts the feathers growing under it. Everywhere I go, people wonder, "What is that in that duck's head? Is it a tumor? Is it an infection?" But I know it's nothing more than a wad of gum some kids stuck on my head one day when they were bored.

I'm spending so much time sleeping. I have to take Atavan, oxycodone, benedryl...they all make me tired. I spend all day just drifting off, having nice little chicklet-sized dreams about the places I always dream about. They aren't recurring dreams. Instead, they are places I've acually been dreaming out for like 25 years. I have the place mapped out on paper. They have real areas, streets, there's an ocean as one geographical boundary, a large empty area with train fields and airport tracks...a city, specific places I have lived that correspond sometimes to real places but more often to places I have glimpsed through open windows, driven by often or read about. I have a life there, a socio-economic status, prople I know...At different times I've lived in different sections, and I'm guessing that the different sections are hybrids of places I've *really* lived: Hollywood, Ft. Lauderdale, Philadelphia, New York, Miami, Okeechobee, Jacksonville, Oceanside...I feel very comfortable there. I have a life there, albeit somewhat disjointed. I know how things work. There are exciting places for me to try to rent rooms in, to hang out. I'm always attracted to the beachfront at the end of the day because it's warm and sunny and orange. Parts of the beachfront are somewhat usable for sunning oneself or sitting around, but most of it has large machinery or abandoned ships washed up on it. After storms, furniture washes up, weird shells, as if shipwrecks are always happening out there. There's a weird beachfront strip carnival, and a motel nearby where I've stayed in the past. Very low rent.
I'm currently staying in a big apartment that was eeked out of a large house. I love living there; it feels very European, but I'm sharing the place with someone who hasn't told me whom to pay the rent to. She points to an office that's always closed. So there's some anxiety there. But there are some good stores that have opened in a strip that faces the ocean. Good clothing stores, used book stores, shoe stores...a lot of interesting flea markets...somewhere in the city is a great used occult bookstore but I hate going there because lots of people hang out and they're just poseurs. I remember when I decided to start my bookstore, which sells occult, sci-fi, conspiracy and UFOS, I flashed back on that dream bookstore and thought, none of *that*.

Hopefully when I die I will go to this Dream City. That would be fine.

One of the things I noticed as soon as I got over the shock of having Leukemia was the complelling parallels it hat with Alchemy. Even the individual I consider my candidate for the One True Ipsissimus of these Transitional Years, Bood Samel, mentioned it, which confirmed to me that it wasn't just some odd need to rationalize something as being perhaps plugged into the Schematic when it actually wasn't.

My stream-of-consciousness thoughts on this matterm- Leukemia - Alchemy - Chemo - bits of memories, on-line info, etc: Leukemia is essentially a proliferation of white, undeveloped cells that are useless as far as fighting infection. They know only themselves, multiply wildly, never die, and take up every bit of space in your bone marrow. They eliminate the possibility for the existence of anything other than themselves...A microcosmic reversal of the Jewish "God" who inhabited every corner of the universe until the thought came to make some space for something else, and act known as "tzimtzum", withdrawal, constriction...In Jewish Mysticism, Tzimtzum refers to the notion in the Kabbalistic theory of creation that God "contracted" his infinite essence in order to allow for a "conceptual space" in which a finite, independent world could exist. The function of the Tzimtzum was "to conceal from created beings the activating force within them, enabling them to exist as tangible entities, instead of being utterly nullified within their source". The tzimtzum produced the required "vacated space" (chalal panui חלל פנוי, chalal חלל), devoid of direct awareness of God's presence.

And how best to battle this melodrama occurring in my body? Well, Alchemy 101. I.N.R.I. Igne Natura Renovatur Integra. All of nature is renewed by fire. The blind idiot god blasts are fought with liguid fire. Liquids with names like "The Red Dragon", "Ara-C"... They load them in through an I.V. drip...your bone marrow dies, and you suffer what used to be known as the Alchemist's Curse. Hair falls out, nails fall out and turn brittle, sores along the GI track from the mouth to the anus...No appetite, no immune system...you get stripped down to your essence.

More later. I'm nodding...

These fuckers are amazing. Hydrea is the only thing standing between me and death by blast crisis. My white count was at 30 this morning. They decided to double the Hydrea from 4 grams to 8 grams. So they cancel the 4 gram order, and write up an 8 gram order. Except they forget to sign it. So the time for my 2pm dose rolls around, and they tell me that there's no Hydrea for me because the order isn't signed. At 4, they report that the order still isn't signed. I'm like, I really need to get that Hydrea in me, I have another dose due at 8pm. They say they're working on it. At 5pm, still no Hydrea. The nurse says they'll just push the doses back to 11pm (?). I'm like, What? I'm due for 2 grams every six hours. I've missed my 2pm dose, the 8pm seems to be forgotten as well...

I'm doubling my white counts every 24 hours. THERE IS NO FUCKING REASON I SHOULD HAVE TO GO 10 HOURS PLUS WITHOUT HYDREA, except for the frigging monkey robot incompetence of the staff of this hospital. Nobody can sign something for several hours? WTF??? There's nobody to talk to who gets it, there's nobody who understand that this isn't something that can wait until change of shifts...again, what do they care? If I have to go through another round of chemo because they couldn't move their fat asses and get the papers signed, hey, they aren't the ones who are sick and dying. This is just a job. Don't even think about it, and don't take it home with you.

On top of everything else the food service today is serving the most foul smelling crap...they load it on the serving cart right outside of my door, so for half an hour or so the most stomach churning smells are wafting into my room, even with the door closed. Of course, you can't open a window, so I had to improvise: I grabbed a copy of Vanity Fair and started breathing the Chanel No 5 sample. It helped. I'm still stunned that people eat that food.

Then the CNA from India came in to do an EKG and listed my race as "Oriental". I asked him why he did that, and he said that he listed black people as "Black" or "African" if they were from Africa, and white people as "Oriental". I said that White people are not Oriental. They are either Occidental, or European, or European-American, or Caucasian. He showed me the available choices, and they were mixing anthroplogical terms (Caucasian, but not Negroid or Mongoloid), archaic terms (Oriental, not Asian) and yet they felt it was important to have the categories "Black" and "African" and "African-American". They has Pacific Islander, Hispanic...more PC crap mixed with racist terms. I think I even saw "Jewish". I made him list me as Caucasian, and then confused him further by explaining what every term meant. I told him he could be considered both "Oriental" and "Caucasian" as he was from India which is in the East, but his anthropological group was Caucasian...his eyes glazed over. Like, is this what the world is comong to? It's important to delineate which type of black you are, but everyone else is just essentially non-black and who cares what they are specifically? Something tells me a dusky-skinned person did the programming...a shiny happpy Liberal would never use terms like "Oriental".

I find it funny how the doctors & nurses go to great lengths to not mention out loud that I'm probably going to die soon. As my white count zooms upward at a startling rate and not responding to chemo - as one young doc put it, "...it disregarded the chemo, like it didn't even happen." - they're all kind of leaving their sentences unfinished. Like, "We might have to try a really risky transplant, but..." the unsaid part being "...you're toast anyway so you have nothing to lose."

Tonight is a real race to see if they can stop the Leukemia from doubling again. They now have me on 4000 mg of Hydrea and they're starting me tonight on the Desatinib, 70mg twice daily. It's contraindicated with the Voriconizole I'm taking; the Vori can increase the amount of Desatinib in the blood, but because this drug hasn't been out long, they have no idea what *that* could mean. I'm just one big experiment with a rapidly approaching expiration date.

They're also consulting the University of Minnesota, where I ultimately will go for a double cord blood transplant should I get in remission. Those guys have all of these weird experimental treatments to get you into remission. They have one they described that restarts the immune system that went dormant "...between the time we went from the swamp to the farm". My extraterrestrial reptilian genes would love it.

They've decided to try to use a pill to get my Leukemia in remission. They haven't reconfirmed that I'm Philadelphia Chromosome positive yet, but they think the odds are good that I am. So I start Destatinib today, and they're upping my Hydrea to try to get the white blood cell count down, which is today at 18. Since the count has been consistently doubling every 24 hours, by 6am tomorrow it will be at 36 and I will be in excruciating pain long before that. Of course, there's some problem where the order to increase the Hydrea is MIA, so my cells are running rampant. Of course, they won't be in pain, so there's no need to rush. I feel like I am doomed by the incompetence of others.

My blasts are over 70% and my white count is up to 4.2. I finally mentioned to the doc that I think that they need to approach my bizarre ctyogenetics and the disease they hath wrought a little more logically. They seem ready to start giving me chemo AND pills. I suggested that, since that anomalous Philadelphia Chromosome is like a big red blinking light casting its glow over all courses of treatment, wouldn't it be prudent to figure out if it is indeed a true Philadelphia Chromosome with all of the bells and whistles, or just a translocation of parts of the 9 & 22 chromosome caused by an incomplete evolution? Because if I do truly have the PC, chemo usually doesn't work well, and the next treatment should be heavy on Gleevec and its variants. If the cells are just kinda looking like they have Philadelphia Chromosome, things like Gleevec and such won't work, because the elements they target aren't there.

The Dco said there is a test to see if the elements that Gleevec et. al. target are present. He seemed to be in agreement that it would be good to find out once and for all...

It seems to me that determining if the Philadelphia Chromosome is a bona fide presence in my cells would have been checked out immediately upon spoting the anomaly, but then again, logic is out of fashion. These days people base many important decisions on sentiment or laziness or convenience or whatever, with no consideration for logic or long term repurcussions. Sure you can pump me full of chemo and pills, but why make my already toxic body more toxic needlessly? I don't get it.

On the food front, I've rediscovered Laughing Cow cheese. Or as we call it, Mad Cow Cheese. When I was a kid I recall it being in little squares, but now it's in wedges. Same old Laughing Cow on the package though. Laughing because he has Bovine Spongioform Encephalitis!! HAAAAA!!! MOO!!! I've also rediscovered Ring Ding jrs. I'm guessing that all of this toxicity in my body demands food in kind. I never eat this kind of stuff. A big portion of my diet is usually fruit juices, smoothies, cheeses (real, not laughing), soy products, fresh fruit and vegetables, hummus, baba ganouj, artisan breads, organic meat...not now. At a time when I need all of the nutrients I can get, I have to eat overcooked crap. And then the nurses are always asking if my shit is normal, soft, formed...well, I'm eating crap, and so my crap is crappy. More of that devastating logic!

I emailed my old oncologist with the latest update, that the chemo didn't work, I'm pretty much up creek no paddle, blah blah blah, and concluded my email with saying I felt pretty good otherwise and was bored. He found that very funny. The reality is, though, if you are stuck in the hospital and not in crisis mode or doped up you spend a lot of time trying to find ways to amuse yourself. I have my PSP and 5 games, I have my laptop, I have books, I have my ipod...but I'm still going stir crazy.

I have a buttload of stuff I need to do at home; I'm in the middle of putting together my second CD, and the most excellent owner of the Italian label I am on wants me to get more material together. I've toyed with the idea of bringing in some of my synths and samplers into the hospital, but it seems logistically unfeasable. I'm hoping that between now and the time I croak I can get a few good days at home to complete what will be by default my Magnum Opus. I'd also like to kiss my cats Booh and Tulip on their heads one more time.

I'm told that one of the docs will talk to me tomorrow about the recent high blast count, 38% as of 4:30pm today. Considering that I finished Induction chemo 9 days ago, that's a pretty dismal number. It's unclear if they are going to persue the experimental pill course they discussed earlier, or if I will have to do more chemo. Or if we are completely out of options.

Can I just say I'm tired of having to pee in a urine collector? Or smelling like a chemistry set? Or having to eat totally processed foods and avoid fresh fruits, vegetables and anything uncooked? And while I'm on the subject, I'm tired of having to be pleasant to all of the hospital staff. I'm tired of the beige and speckled mauve decor of my room. I hate sleeping on vinyl covered everything. I'm tired of taking a bizillion pills, of getting transfusions and infusions, of looking alternately like a sausage or a concentration camp survivor. I'm tired of having a catheter coming out of my chest. I'm tired of my moods being dictated by my blood counts. I'm tired of having to take oxycodone just to eat and get through the day.

I'd just like to spend a day like I used to, where I wake up, go to the coffe shop near my house and get a nice hot chocolate, walk down to the train, go downtown and do some shopping, buy a smoothie for lunch, hang out in the park, people watch...and the reality is I will probably never do that again. At this point, it's questionable whether I will ever see my house again. I always had this idea that, should I ever be diagnosed with a terminal disease, I'd buy one of those hamburgers off of a food cart, one of those hamburgers made from mad cows and topped with fried onions. They just always smelled so good to me, but I'd never eat one in normal circumstances for obvious reasons. Now it looks like I can't even do that, although now would be the time.

So this morning we learned that the chemo did not work. Oh, it knocked the percentage of blasts back to 20%, but it did not put me into remission. So now the Clowns of Clown College need to figure out what the next move is. Strangely, I'm not depressed because I did not expect this to work. They mentioned they may try to treat it like a chronic Leukemia, with pills, but that presupposes the notion that the Leukemia will not come roaring back.

In the meantime, I'm following Warren Zevon's advice: Enjoy every sandwich. I actually had Haagen Dazs Cookies and Cream Ice Cream after learning the news, but you get the gist.

I spend time playing a PC game called Shoot The Roach. It's deep; all you do is shoot roaches with various forms of weapons: pistols, rifles, laser guns, flame-throwers...the roaches are dressed as soldiers, hippies, businessmen, runners...as I was playing it, I was thinking about one of the Ultimate Questions: Are you a roach? Or more precisely, am *I* a roach? One of those metaphorical entities that you can throw all sorts of drugs, chemicals, ec. at and it still keeps living? Or am I just a typical biological entity who will succumb to toxicity at a predictable rate...Do i feel like a roach? I think about how crappy I felt coming in here two weeks ago, and how I feel now, and I think, well, I may have SOME roach in me. I don't feel TOO bad, and I've had lots of chemicals and bad stuff poured into me recently. Hopefully some maniac on a PC won't shoot me for fun.

I am a sleepy roach. I had to get a platelet transfusion today because I had a wild nosebleed that wouldn't stop. Part of the pre-meds they give you is Benedryl, and I think that wiped me out. I fell asleep, and was awakened only by the noxious odor of the food service delivering dinner: a cart of maybe 100 trays of unbelievably bad-smelling/bad-tasting food, with broccoli adding the ammoniac grace note that compelled me to rise from my bed, push the door shut, pour some lavender and eucalyptus oil into a pill cup to counter the foul effluvium, and pass out again.

Passing out is like time travel for pedestrians. You are at one point in time; you pass out; then you are elsewhere in time. Thankfully, when I came to, I was far past dinner time. I'm still kind of wiped, but if I go to sleep now I'll be up all night having to listen to the intrigues of the lower-level staff, since my room is far away from the supervisor's post. The goof-offs hang out near my room, engaging in melodramatic cell phone calls ("You ain't listening to what she be saying!"), involved discussions ("He needs representation. I know he committed a crime, he needs to do the time, but they gonna run all over him..."), flirting, whining, etc. The huddled masses, yearning to breathe free. I'd rather toss and shiver in my night-sweats, oblivious.

Sleeping is by far the most painful event I am contending with. For some reason, when I sleep, I get wild night sweats; anything touching me leaves a painful pressure mark; I mouth-breathe; I have vivid disturbing dreams...and then I wake up drenched, smelling of chemicals and sour sweat. I have to get up, wash off, change clothes, change my bedsheets...then do it all over again over and over until morning. The doctors just give the vague, "leukemia/chemo/antibiotics" reason for why it is happening, but it's not really documented. It doesn't happen when I'm awake, and all of those things are present 24/7...at least I no longer have to sleep tethered to my pole. THAT was a drag, lugging that thing around while I changed clothes, sheets, washed up, etc...I force myself to sleep because I know I need it, much the same way I force myself to eat food I'm not hungry for.

On a happier note, I've been playing Loco Roco on my PSP. It's a weird Japanese game with happy yellow blobs that roll around, eat fruit, and sing. They meet happy friends and cry when the nasty spiky black alien urchin thingys try to get in their way. Your part in all of this is to enable them to roll around, eat, and sing happy songs. Despite my cynicism re: all things upbeat, I find this game very satisfying. I guess I'm no longer in the right state-of-mind for first person shooters.

My brother and his family sent up big boxes filled with stuffed animals and candy. Lots. The stuffed animals are decent quality, but I'm not a stuffed animal person. I AM a candy person, and I do like looking at the big display of Oreos, Chips Ahoy, jelly beans, Twix, Butterfinger, Snickers, Skittles, Twizzlers, M & Ms, Rice Krispie Treats, etc. I posed the giant stuffed bear, ourangutang, penguin, bear-angel, black bear, black cat, and other assorted stuffed animals to guard the candy, and the big happy-face bendy flowers I wrapped around the arms of one of the guest chairs to make a throne of sorts. My madness is only enhanced by my sickness...

I was washing up a little while ago, and noticed that I'd aged about 20 years. I'm sure I'll look even better next week, bald.

I'm finally getting into sort of a routine now that I've gotten past the critical whack-out drug induced salvage craziness. Things are far from comfortable. In the past 14 days I gained 30lbs of fluid (1/3 of my body weight; I usually weigh around 95) which I'm just starting to lose now that the 5 days of chemo is over. Now I wait for my blood counts to crash, my bone marrow to die, and see if I survive to then face a stem cell or bone marrow transplant.

Took a fall a couple of days ago. The IV pole to with I am attached by a catheter to my heart is kept top heavy with big bags of saline, antibiotics, etc. The thing one big mess of tubes, wires, cords, etc. If you want to go to the bathroom, you need to get up, unplug the pole from the wall, move all of the wires up off the floor, and try to maneuver through a small clear space into a tiny bathroom. Well, I got up to get to the bathroom and the wheel of the pole caught on something. The top heavy pole swung around, slammed me in the face, pulled on my chest, knocked me to the ground, and there I was, nowhere near a nurse call-bell.

I started banging on the door with my foot and yelling. "Help!" The black Jamaican nursing aides were having too good a time to check to see what the problem was (I could hear them jiving and laughing about some TV show)but finally a hipster nurse ran in, saw me there, and got help fast. The issue was compounded by the fact that my platelets were at about 15; very little clotting ability.

They got me back into bed; cleaned me up. Big bruises, and now a bright orange armband to go with the sign on my door that says, "Fall Precaution" with a picture of a falling star on it.

The orange bracelet goes well with the blue one that says I have an "Allergy Alert". We found out about this "allergy" when they gave me an anti-emetic that caused me pseudo-seizures in my extremities, making it look like I was trying to get UFOs to land on the hospital roof in proper formation. Really weird chopping motions, waving, finger flexing...

So, back to my routine. Midnight: try to relax. Pneumonia makes me hack and have bad night sweats, so I usually change shirts a few times and try to get the sheets changed at least once. Around 6am they come in for labs and the day begins; vitals, docs popping in, housekeeping, food service, miscellaneous annoying hospital workers. I try to find something to eat that doesn't involve hospital cooking. My S.O. comes and visits, bringing vital supplies and boosting morale, I play on my laptop, listen to music, try to rest...It's a countdown to the horror of what is coming.