Monday, 3 October 2016

Late to my own Funeral

I often tell people that I died March 3rd, 2014. That's the day I mark as the end of my life. That's the last time I ever stood on my own two feet. It was a sudden death, and yet it has been the most lingering sort of suffering purgatory that I can imagine from that day until the day the rest of the world comes around to my hypothesis and finally puts me in the ground.

Let me explain. I never really knew I was sick. My doctor had always told me that aside from being overweight I am healthy as a horse. I certainly felt pretty healthy, until December 2014. My hands got sore. I thought it was carpal tunnel (I spend a lot of time on the computer, writing and gaming and treating it like a prosthetic brain) and so I made plans to go see the doc, took it easy on the PC and even tried an essential oil lotion my parents swear by for muscle and joint pain.

The pain got worse and came with clumsiness and stiffness by late February and I was starting to worry. Then, on the evening of March 3rd, a Monday evening, I got home from picking up my younger brother after work and... fell over. I stepped out of the car, took two steps and fell flat on my face. I thought it was the ice, maybe low blood sugar (hadn't had time for dinner yet) but I made it inside and hobbled to bed.

For a few days I thought I'd just sprained my ankles falling, but I didn't get better. I got worse. I couldn't stand for more than a few seconds at a time and then not at all. My legs would not support my weight. My hands wouldn't open completely. After a week of fear and not knowing, we called the ambulance. Thus began a long odyssey that would see me spend more than half of 2014 in hospital. Barring a few emergency room visits and visits to relatives, I had not spent any time in hospital since a friend and I collided and he bit my nose open back in fourth grade (human bites are filthy).

I live in a rural area, and the Ambulance was acting under constraints and guidelines, so they took me to Carleton Place Hospital. They managed to help me into a wheelchair and I spent the next six hours in a waiting room as they determined that they were not capable of handling me as a patient. Carleton Place has no rooms fitted with lifts (though at this point I was still able to transfer by rolling, sliding and the like), minimal testing facilities and not a lot of provision for long-term care. The doctor managed to get in touch with a colleague at Queensway-Carleton Hospital in Ottawa and I was transferred there. They found me a room that evening and I spent my first night in a hospital bed that would be my home for some time to come. I got to learn how to use a urinal, and wasn't that fun.

I'm Canadian, so I was never all that worried about medical costs. OHIP, the Ontario Health Insurance Plan, would handle all my basic needs and costs. Medications would be out of pocket once I was discharged as I had no medical insurance, but there are programs for that as well. I was worried about what was happening to me. The first day they ran tests. Many tests. Blood, urine, a full x-ray skeletal survey and then they ran a neurological test. An EMG or electromyogram is a means to test nerve conductivity, by poking you with over-sized novelty knitting needles and then running a current through to see how you respond.

It took a good deal of voltage to get the nerves in my hands and lower legs to respond. I took it with good cheer, though, bantering with my Neurologist and the technician. Cracking jokes about the Sicilian jump-rope and promising that I'd finger anyone they wanted. "Ve haff vays off makink you tock" or "and now, wretched sand-dweller, what can you tell me of your troop movements?" . I was trying for stoicism (by the fourth EMG study I'd gone through, it was more acceptance than anything). Deflecting my fear with humour.

The initial diagnosis was Guillain-Barré Syndrome (my neurologist's intern had another idea, POEMS syndrome, but they both dismissed it as vanishingly unlikely for someone so young) and the initial treatment was a course of Intravenous Immunoglobulin. IVIG is a blood product that was supposed to stop my own immune system from stripping the myelin sheathing from my peripheral nerves.

A few words about demyelinating illnesses: while my peripheral nerves were being eaten, my other nerves seem to work just fine. I still had (and have) sensation in my hands and feet. I also had fairly severe polyneuropathy. The feeling of ants crawling under your skin, tingling aches, sharp twinges, prickling, all seemingly at random in my lower legs and forearms. As a pleasant side effect, my pain sensations in the affected areas actually seemed increased. So nice when things work out, isn't it?

I spent two and a half weeks at the Queensway-Carleton hospital. After the 5 days of IVIG, there were more tests, daily work with physiotherapy and about 20 hours a day of laying on my back and being bored, worried and depressed. I went through three or four roommates during this time, only one of whom was sociable. A nice guy with heart problems and an appointment to have a new pacemaker installed, just waiting for an infection to clear up before he could head to the clinic at the Heart Institute. I got along with the nurses, had daily visits from family (who were driving ~30-45 minutes each way to see me at that point) and most notably: did not improve.

My condition stopped degrading after the IVIG... for about a week. And then my hands were curling into fists even further, and the tingling numbness was creeping up my legs. My knees were getting stiff and sore, and I could not move my fingers more than an inch or two out from a closed fist. Working out daily with therapy putty (available in a variety of colour-coded densities to tailor your workout, not to be taken internally but it DOES do the copying ink trick silly putty does) and with a two pound barbell, trying to keep them working. That and about a jillion sit ups and twists a day, trying to keep my core strength up. All for naught, as it turns out. It was during this period that they ran me through another skeletal survey and then the MRI.

I must admit, as noisy tubes go it was excellent. Not particularly comfortable but I'm not the claustrophobic type and isolation doesn't usually bother me either. Might have been nicer if they'd played something other than Skrillex for 90 minutes though. After that was the first of several CT scans, firing noticeable amounts of ionizing radiation through various portions of my body in search of the REASON for my illness.

As it turns out, it was a plasmacytoma on the left side of my pelvis. A cancer, in fact, similar to multiple myeloma. That revelation coincided with one of my more exotic blood tests returning (from California no less, because apparently Canada can't be arsed to have that particular tech) and my diagnosis shifted from Guillain-Barré Syndrome to POEMS Syndrome (which was that clever intern's first thought, discarded as too rare). My neurologist (a lovely woman and a beacon of competence and optimism) told me that they don't actually HAVE a set course of treatment for POEMS syndrome, because it is extremely rare. I have yet to meet a neurologist (and I'm into double digits by now) that has seen it more than three times. Except for one older chap who spent some time at the Mayo clinic. POEMS is an acronym of course, standing for Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal proteins and Skin Changes; suffice to say that POEMS is more of a gift basket of symptoms than a particular disease, as no two cases are quite the same. Not everyone suffers all the symptoms, and the severity varies a great deal.

Put simply, the cancer in my butt was poisoning my bloodstream with identical proteins that clung to my peripheral nerves. My immune system responded by yanking them off, resulting in debilitating demyelination and localized paralysis. Or, as I choose to put it: my self loathing reached a truly meta level. Once again, I managed to find the far end of the curve. It's exhausting working so hard to excel.

They transferred me to the Ottawa General Hospital, the 6th floor is their Oncology/Hematology ward, which is appropriate as I had both problems in spades. This time my room was a four-bed ward room, and I think I was the healthiest person there at all times (three weeks later I got a double room with a brilliant and fascinating early retiree who worked for Bombardier and had fascinating stories... as my Grandpa worked for Avro we had some interesting talks about the Arrow). In fact, I do not think I have once shared a room with someone who was better off than I was. Half my roommates were terminal cases and their care was as much palliative as anything else.

At this point, the quality of the menu went downhill like coal mining stock or JEB!ya's presidential prospects. The Ottawa General is an excellent hospital, well appointed (if getting on in years) and with a very good staff of nurses and a staff of doctors ranging from adequate to excellent. The food, however, is wretched. The very worst kind of institutional meals. The worst was the tuna sandwiches. It was like two slices of slightly-stale bread around a generous trowel of spackle. I have rarely had food quite so tasteless and unhealthy. If not for my family bringing fruit, trail mix and granola bars I might have gone mad and murdered someone with one of those godawful packets of protein powder they use as a substitute for offering more actual protein.

*ahem* Tangent. Happens. Moving on.

The reason to transfer me to the General was that their hematology department is far better equipped. The plan evolved by my neurologist (who has privileges at the General, the Civic, the QC and who knows where else besides) and what seemed like the entirety of the neurology department at the General (I was not a common case, I suppose they all wished to have a look-see) and their colleagues in oncology, was to treat my plasmacytoma with an intense course of proton beam radiation (no, I won't call firing a particle beam through my crotch "therapy") in conjunction with five sessions of plasmapheresis to treat the POEMS.

For those of you who have not had the pleasure, plasmapheresis is blood dialysis. They insert two needles (large gauge, because clotting jams the machine) into your veins, usually one in each arm. From one, they draw out blood into a large and complex machine (picture a voting machine on a rolling cart with a nest of clear tubing and some of those racks for hanging about 6 or 8 IV bottles at the top) which filters out the blood plasma and replaces it with albumen. In my case, to the tune of about 6 litres

On hearing that, I asked if they could just give me a few bottles of the house red, or even a nice Riesling. No such luck. They wouldn't even throw in some sugar and lemon juice so I could be a meringue. Some people's children, honestly.

An aside here: if you work in the medical profession as a doctor or technician (or even a nurse, though they seem less stiff) then develop a sense of humour. I have had SO many quips, bon mots and snarky comments fall so flat I expected a large shepherd's crook to drag me away. Medicine is serious business, and I respect the dignity of your profession... but laughter is, as Niven suggested, an interrupted defence mechanism. It's our defiance to the darkness past the firelight. Our way to howl back at whatever is out there beyond what we can see.

The first attempt at plasmapheresis was nightmarish. I have never liked needles, and my arm generally swells up like a balloon after any inoculation. At this point they were taking an average of six vials of blood every day. Oh, and since the lab techs like to get an early start (both at the QC and at the General) they liked to wake you at 6 a.m. to jab you. You know, when your heartbeat tends to be at its lowest ebb and you are likely a little dehydrated as well. After two weeks in hospital, my arms were a mass of bruises (as was my capacious abdomen from their daily blood thinners lest I develop a blood clot as at least one poor roomie did) and I was averaging one needle per vial. I do recall a few pleasant moments when they had to go hunting for a vein in out of the way places: the back of the hand, the inside of the wrist, the base of the thumb (that one was like a hornet sting). Suffice to say that I am not an easy poke on the best of days, and by this point I was a bit of a nightmare. The tech found veins, but the machine was jamming approximately every 3-5 minutes, requiring her to make adjustments, move the needles around and generally fiddle with it. I grew to dread that shrill beeping each time it stopped. After four HOURS and only three of six IV bottles she gave up and I weakly told her that I was sorry but I didn't think that we would be friends.

It was agony. It felt, after ten minutes or so, like I was being stamped on by an elephant. Slowly. My mother, who was there and watching, says that I looked like I'd been crucified on a hospital bed, arms splayed out and half-conscious, moaning and twitching quietly.

At this point I will take a detour to mention that opioid painkillers don't seem to actually work for me. Or if they do, no doctor has ever been courageous enough to give me a dose that had any effect. I have had better luck with aspirin. So this was a rough day. My worst of my stay in hospital to that point.

The next day, forty minutes into another MRI (and an even smaller tube than the Queensway Carleton's machine, which necessitated stretching my arms up over my head to fit my apparently abnormally broad shoulders into the machine... not the most comfortable of positions) they pulled me out to install a central line in my neck. I cannot recommend the OGH's MRI, the gauge is slightly too narrow, the acoustics are dreadful, the DJ is one-note and the pillows are lumpy to boot. My escape was a relief, but only briefly. Under local anaesthetic and a fluoroscope (a word I had, until then, never had occasion to say or type except when referencing Bugs Bunny cartoons) they opened my neck and slid a tube into my jugular.

If ever you have occasion to have a similar procedure, my advice would be to decline. They itch, the feeling when they fill the tube with saline (every time they use it and sometimes just to make sure it's still working fine and not clotted solid) is like cold bubbles in your heart and best of all they flop around loose. I had a recurring nightmare about catching the, for lack of a better word, 'dongle' behind my shoulder or in the hospital bed and tearing it out as I slept, to bleed to death and leave an awful mess for the staff. After the first night I cadged some of the netting they use to cover burns and a little help rigging a choker to keep it from flailing around, but it wasn't pleasant. It did make the plasmapheresis bearable, though it was still four hours of painful immobility every other day.

By contrast the radiation therapy (still feels strange using that term for a low powered phaser) was shockingly easy. Generally it was early in the day (the nuclear medicine folks are generally busy, and going later in the day meant an interminable wait), hence my motto: the best part of waking up, is hard rads in your butt. Sorry Folger's. Every day for 20 days (well, slightly longer because the rad crew don't work weekends and weeks are an odd number of days long) they trundled me down there, and honestly the worst part was that some of them had truly awful taste in music. When a Celine Dion song is a step up, something is badly wrong with your choices. I did not suffer any of the usual side-effects of rad therapy: no burns, no diarrhea, nausea, nothing. RIGHT up until the end, when I had a brief and excruciating bout of radiation cystitis. That made urinating in a bottle even more of a pleasure, but at least it only lasted five days (I think the threat of catheterization may have scared it off).

That was April and most of May 2014. All the while I had a new crop of physio and occupational therapy and social workers helping me (I hope Mati gets full time status someday, but two years later she's still part time/casual). I got to learn the joys of a wheelchair for the first time, and no, I do not recommend them either. I even started teaching myself to use a transfer board to get into it. By this point my hands were withered and useless claws, I could not even hold out my arm and keep my wrist from flopping downwards, but I still fought tooth and nail against helplessness. I was using reachers, somehow. I was typing with one finger on my mother's borrowed macbook, letting friends know where I was and that I would be more or less out of contact for a while. I was fighting back, because finally we had a plan and we were treating my illness. It sucked. It hurt all the time, but it was something.

By the end of May 2014, my treatment was done and they were shifting me to the Rehab center in the hopes of helping me recover. Viewpoints were rosy, but vague. I have yet to hear two doctors mention the same timeline regarding my case. I heard everything from six months to five years to maybe never. I heard 'good chance for 100% recovery' and I heard 'you'll likely be walking in a year from now' from various neurologists (my first one had to take maternity leave in May, but she's back and oh did I miss her cool sound council... come to think of it, at least 4 or 5 of my doctors have taken maternity leave while I was their patient). They seemed satisfied that my cancer was dead, my blood protein levels were trending downwards and all signs seemed good.

So I was shifted to Rehab, where I met a much more intense workout regimen and a much more intense desire to get me back to normal. I worked hard. I worked myself stupid, in fact. Two hour-long workouts every day, and on weekends when the rehab ward was deserted (most rehab patients go home on weekends, but my home was up 13 stairs so that was not gonna happen) I would wheel myself the kilometer or so across the hospital to Tim Horton's and have a hot chocolate and a sandwich. The food in Rehab was better, too. Not as good as home, but it was recognizably food and reasonably tasty. So even when I wasn't in physio I was working with weights or with tools, trying to wake my hands up, trying to cling to some upper body strength. My legs were useless from midthigh by now, my hands were these floppy claws but I still worked.

I was not alone in fighting. My family were right there with me. Every single day, either my brother or a parent would drop by for an hour or three. It was a 60+ minute drive for my parents, nearly that for my brother. My sister even dropped by once or twice, though she'd been busy having a baby while I was in the Queensway Carleton. In fact, she checked in the day I left for the General. The amount of money they all spent on gas, the time, the effort for two retirees in their sixties, was herculean but they were there.

After a week in Rehab, my doctor was bored with me. I actually saw the interest in my case wane in his eyes. I wasn't getting better fast enough to keep him interested, and all signs suggested it would be a lengthy recovery. After the first weekend, the focus seemed to shift from getting me back on my feet to getting me out the door. Budget constraints, I imagine but understanding did not make it less painful or frustrating or devastating to my sense of hope. They ran my family and I ragged jumping through bureaucratic hoops and filling lists of equipment for the fashionable cripple. Everything I would need to survive once they were done with me, from my very own wheelchair (custom-fitted and everything) to a van to drag it around (oh, such a pleasure THAT is, to be strapped down in the back of a metal box like fucking cargo). Still I fought along with them, trying to get everything together.

At this point, my dog died. I had not seen Jasper since March. I had loved him since he was a puppy. I never got to say goodbye to him. I nearly slit my wrists that day, or hung myself using the mechanical lift in my room. Still not sure why I didn't. Some days I honestly think I'm still alive because I hate myself too much to let the pain end. I miss you Jasper. There will never be another like you. You were as much my brother as Thomas is, and a far better listener.

After three weeks, they scheduled me for going home. We had NONE of the equipment at that point. Much of it was still on order. We fought them, on numerous occasions that week my parents actually ambushed my doctor to talk to him because he was avoiding our difficult questions, and we earned ourselves an extra week.

Well, an extra three days. That four day Canada Day weekend really came at a shitty time. Patriotism will be the death of us all, mark my words.

So I came home, not to the house I grew up in and shared with my brother but to my parents' home in the country. It, luckily, had an attached 'granny-cottage' that was more or less wheelchair accessible. At least, until you get to an outside door, anyways. But I had nowhere else to go, so that's where I went.

Social services do exist out here in the boonies, but they are painfully underfunded, overworked and few in number. I did not get much help from them, though I do get disability since I was utterly incapable of fending for myself much less working. At this point my hematologist passed my case to a new doctor and my first appointment with him was not positive. 90 minutes in the waiting room (after an hour in the car) we were told that an intern was taking his spot for the afternoon. I spent that appointment regaling an intern who had not heard of my case until an hour before with the details, then asking pointed questions about the very expensive drug they wanted to try me on. My second appointment two weeks later, my actual hematologist told me that I still had cancer cells in my body but they didn't have any tests that would let me know where or how many. He followed up by informing me that while my nerves were recovering there was every chance that my illness would recur in the future if the cancer returned. They tried to sell me on a drug named Revlamid that might maybe help. I read the info, did my research, talked to my neurologist and told them no (the words "teratogenic" and "Thalidomide derivative" may have played a part). My hematologist lost interest in me at that point, but not before he walked the goalposts back a little further on my hopes for a recovery to a normal life. Nice guy, we'll come back to him later.

That was it for a while. I spent some of my disability on exercise equipment (an armbike is one of the few kinds of cardio you can do when you're in a wheelchair) and once or twice a week I'd go to Wal-mart or home depot and just roll around. I hated that. I hated being in public. Still do. I hate the perceived weakness. Then again, I have always hated weakness in myself, so self-loathing's not new. Just louder now. But I did it, because I wanted to get better and dirt roads don't work so great for a wheelchair. Neither does a grassy lawn.

In the first week of October, I fell out of my shower chair and broke my right foot, both ankles and both knees. I was laying on the bathroom tile screaming at my parents to go get the shotgun and put a round through my head. I was begging for a knife so I could cut my own throat.

I had never broken a bone, until that night. I've been hit by bats, balls, bikes, toboggans, rocks, people, dogs, cats, several cars, a number of canoes and a frozen tree branch so heavy that when it fell from the tree it pinned me under it until another passerby helped lift it off me, all without my bones giving in. Then I broke five at once, because I'm just that competent.

It took an hour for the EMT's and my family to get me on a stretcher, another hour (more? I wasn't entirely there at this point) in the Carleton Place hospital while they tried to get me in somewhere they could handle someone in my condition (no, they're just not set up for handling serious disabilities). The emergency room doc shot me up with some morphiate or opioid that... well, much like the Fentanyl prescribed for my cystitis, mostly made the injection point ache like a bastard. He called it Dilauded, but I could have sworn it was just diluted.

Somewhere a drummer just played a rimshot and does not know why.

Things were not much better at QC. I refused to let them move me, the pain was just too bad. Dad tells me (I do not recall) that when asked to describe my pain, I used the words 'lambent' 'effervescent' and 'scintillating'. Even in agony, the snark and the love affair with words come through (comforting, that). X-Rays confirmed that I had multiple breaks in all four joints and in my foot. Apparently bone loss from nearly six months of relative immobility will do that. Apparently that medication I was taking to try and keep my bones from weakening wasn't working well enough. Apparently I spent nearly 20 hours in an emergency ward room, on a gurney because I wouldn't let them move me again, largely in the dark, vaguely conscious and in agony before they found a bed for me. Moving me to the bed was unpleasant.

It took nearly a week to find painkillers that worked. In that time I did not eat, drank as little as possible and mostly tried not to move at all. I didn't take a shit for nine days, apparently. Finally they found a mix of three different drugs suggested by the palliative care team: Nabilone, Amytriptaline and Naproxen. It actually worked.

It also put me into a fugue state, or maybe a waking coma, for two weeks. My parents eventually had them reduce the dosage so I'd wake up, and someday I may forgive them for that but those two weeks I do not remember are my ONLY fond memory of 2014. I was in one cast, the other leg was just left as is for some reason (their orthopedic doctor was a bit of an asshole, and about as helpful as a septic wound) and I was looking at a minimum six weeks like that. A month of that six weeks was spent at the Queensway Carleton, in a ward room with patients as bad or worse than myself. Then they tired of my presence and my constant niggling demands and shunted me to a long-term recovery ward in a small town hospital. Coincidentally, it was nearly as far from my family as the QC was, because we're just lucky that way. Could have been worse, I might have been consigned to Cornwall (which is one step up from Mordor).

I was back home the second week of December. Not because I was healed and able to cope, but because I simply could not take that ward any longer. So finally I got back home, just in time for my first wheelchair Christmas. Snow is fantastic for the disabled, btw. Nothing like pushing a wheelchair through a slushy parking lot to really bring home the joy of the season. It's delightful. Aluminium wheel rims reach ambient temperature with a speed that is amazing, and yet take forever to warm back up again. It's fascinating the way physics bends itself to allow it.

In the new year, I and my family were pushing to get me into a physio program at the Almonte hospital. Towards this end, I had an appointment with a physiatrist. This woman was well informed, had seen numerous patients with demyelinating conditions and in the course of an hour-long interview neatly excised the last of my hope for recovery. I left shattered, asking my parents to stop by the liquor store so I could get started on drinking myself to death. I didn't start drinking though, but I did spend most of the next week alone, in the dark, not eating and mostly sobbing quietly to myself as I contemplated the horror of going right back to where this nightmare began again for another round.

February of 2015 brought the only really good news I'd had in months: the Supreme Court of Canada came down in favour of assisted suicide, and required the government to act by 2016. Finally, a light at the end of the tunnel. I had always, from the very first day I got sick, told my family I would not live this way. Now I had something to look forward to: release.

Except that they won't accept that. My friends won't accept that, even though every time we talk it ends up becoming a venomous, embittered rant peppered with my own knowledge that i am a venomous, embittered bastard who cannot stand himself. My loved ones won't accept that, even though I don't have much of a life anymore. So I'm still alive, not because I want to be but because my death would so harm those around me. At one point I conceived the plan of being so foul and vicious no one would be able to stand me and my death would be a sweet release for them too. I gave it up because it would take too long, and would take way more effort than I am prepared to invest in anything anymore.

2015 was pretty mild by comparison with 2014. Without hope, I mostly just gave up. No physio, because what am I working towards? No motivation for anything. I saw my neurologist twice, who attempted to rekindle hopes and who is genuinely pleased at my progress. My hands work (well, let's say 66-75% function, what with the tremors and twitches and aches and clumsiness from abused nerves) but my legs... they're still there. Just a couple of blunt, edema-swollen flippers that seem to exist so I can stub them on things while awake and while asleep. At the moment there are three bandaids on my right toes, but only two on the left. Better than usual, which is kind of sad. I might someday be able to walk again. Or not. Who knows? It's a mystery, because I'm a unique snowflake.

I had been tapering off my pain medication at that point (I have a lifelong fear of dependency, there's a lot of alcoholism on both sides of my family) but with nothing to worry about in the future I went back to a higher dosage of the Nabilone. It's the only one of the three I still take (the Amitriptilyne gives me the comas and the Naproxen doesn't actually seem to have a noticeable effect alone or with the Nabilone). For a while my new G.P. doctor was talking up medical marijuana for pain but thanks to Harper and the Tories Canada doesn't cover pot but they do cover synthetic cannabinoids like Nabilone. On two or three occasions I've actually gotten a high off it that feels just like marijuana is described (no, I've never smoked pot, my mother's allergic to it and she would get headaches if I even spent too long in the wrong hallways in High School), but all I really want is just enough numbness to be able to function through the eternal neuropathy.

During the summer I received a phone call from my new hematologist. Apparently my old hematologist (the incompetent, lazy and callous one) moved to Calgary and set up practice there as an anesthesiologist or something. Without informing at least one of his patients. What a great guy, huh? But my new one, whom I had actually met ONCE my first day at the General, just before SHE went out on maternity leave (seems to have been a theme, because four or more of my doctors and at least two of my nurses went on maternity leave at various points during my months in hospital). She wished to see me, so we trundled across town to say hello.

We left the meeting with varied opinions. My parents were elated, hopeful. She was energetic and optimistic. She had ideas, and was pushing for me to undergo an Autologous Stem Cell Transplant in the hopes of killing off my illnesses and putting me on the road to recovery. My neurologist had mentioned the same months before, and both referenced the same study. It might actually work, and unlike a standard stem cell transplant these would be my own, harvested and reseeded, so I wouldn't need to be on immuno-suppressants for the rest of my (likely short) life. This was nice, as I'd finally gotten off Prednisone in March after a year on the drug. Foul stuff. Nearly a year later and the edema in my legs is only now starting to get better (well, until I get in a wheelchair, and all the fluid heads to its summer home).

 The idea is to use chemotherapy to kickstart my body's immune system, and then dose me with a drug called neupogen to get it producing and releasing stem cells. Then they jam some more tubes in my jugular (bigger ones this time), drain out my blood, spin out the stem cells and start growing them. I assume at some point they'll put the rest of the blood back in (no matter how much I ask them not to). Then once they have enough they hit me with an intense round of chemotherapy in the hopes of killing my bone marrow (and immune system) stone dead. That done, they inject the stem cells and hope I stay alive long enough for them to rebuild a) my bone marrow and b) my immune system. This last step may take up to (or longer, because medicine isn't good at scheduling) a year and comes with a whole host of medications to protect my delicate constitution from anything as terrifying as the common cold.

My parents, my family, are very hopeful. They want to see me as they remember me. They want to see me happy and fulfilled, the me they knew for thirty-five years.

But I did not know if this is what I wanted. No, in my heart of hearts, every time I thought about it, I knew that it wasn't what I wanted. I just want to check into hospital, let a doctor give me three injections and then just... stop.

No second set of necktubes. No round of chemo to get my immune system shaken up. No more blood dialysis to harvest my stem cells. No intense round of chemo once they finally have enough of the cells. No injections, no blood tests, no endless rounds of hospital stays and misery. No sleepless nights because the neuropathy keeps me awake. No worries about finances, living on a very low fixed income with zero savings left. No laying awake until dawn wondering when the two monsters inside me will wake up and put me right back into the hospital and take what little I've gotten back from me.

I feel like I've been dead all this time, suffering through my own personal purgatory (or Naraka, or Yama, whatever). I don't see a road from where I am right now to where I was in 2013. I can't even imagine going for a job interview in two or three years, explaining that I've been out of the work force all this time because I was sick with cancer and POEMS. I do not see any future ahead of me. Not one that I wish to explore. Just lots of barred entrances, staircases and ladders. Some fucker even put up one of those ropes we all loathed in high school gym class.

Could I recover? Possibly. Eventually. Partially? No one knows and there exists no ready technology to answer the question. How long would it take? How much will it hurt? How much more humiliation can I stand? How long until I slip again, and shatter some more fragile bones? I do not have answers and neither does anyone else. All I have is constant, dull pain managed with a drug habit and the prospect of an uncertain and unpleasant future no matter what I choose. My days are largely spent finding ways to waste time. Trying to tire myself out enough to actually sleep isn't easy anymore, and my dreams are not restful ones. What then, do I choose? Selfishly pick death in spite of those who care for me? Or soldier on in spite of  my longing for an end, to keep them sane? I don't want them to suffer, but I don't want to suffer anymore either. Where's Yossarian when I need his cool, sage counsel? Hell, I'd settle for Nately, the twerp.

I just do not know what to do anymore. What I do know is that the person I used to be is gone. We just haven't held the wake.

I long ago lost the plot of this odyssey. As usual, what started as an attempt to explain my condition has turned into this rambling diatribe against existence in general and mine in particular. The last time I was truly happy? The day I was told that when I go in for this Transplant sometime in February, my social worker will be the same incompetent trollop who screwed me so royally in June 2014. I'm told it will be her last week there, and my first thought on learning that was "maybe she's dying, and I can tell her how useless a fuckwit she was before she goes," so I'm not really in a good headspace anymore. The chance to slag off someone for blocking a handicapped space will keep me smiling for an hour, but it's a selfish, bitter little pleasure. I am not proud of these thoughts, but I am trying to be honest. This is, among other things, a catalogue of human weakness and vicissitude. I'm reminded of a Patton Oswalt bit where he goes on about being the first person to fight a craven, cowardly surrender to cancer. It was funny at the time, now it just seems logical.

I lived well, while I lived. I have more regrets than I can count, but I also have happy memories to look back on. Just... I don't have any to look forward to.

Because I died, March 3rd 2014.

~ ~ ~

The above was written at the end of January 2016, just before I went in for Stem Cell collection. I am still alive, and while I don't have a desire to live I am just stubborn enough not to give up. Collection was miserable, as I expected. I had an odd reaction (you hear the words "anomalous" or just "huh, never seen that before" a lot when you're a Pullen) to the Neupogen and they dragged me in a day early because of a fever. This gave them ample time to argue about what kind of necktubes to fit me with. First it was going to be a central line, then a Hickman, a porta-cath and finally a perma-cath. This is ~9 inches of tubing, by my reckoning, roughly two thirds to half of which is inserted down my jugular vein and the rest was threaded over my collarbone and then under the skin to an incision above my right breast. A pair of plastic brackets sewed to the skin cover the exit wound. The twin dongles are wrapped in gauze and the dressing gets changed once a week or more because every time I bumped it, whacked it or rolled over onto it in my sleep I managed to add to the scabs and dried blood under it. I had a very itchy time, to the extent that I seriously contemplated trying to tear out half my ribcage so I could get at the itchy bits from underneath.

After the dongle they ran some tests, found me a room back on 6West (not on 5W in the Bone Marrow Transplant ward, because they were busy and I wasn't so immuno-compromised yet that I couldn't be in a more open ward) and the waiting game began. Oh, and the foley catheter. Ugh. Not a fan.

Collection required a small dose of chemotherapy drugs... though really, when you're talking of Cyclophosphamide, there's not really such a thing as a small dose, is there? That was to wake up my immune system, shock it enough to get my body releasing stem cells. Then a day later they hooked me back up to the same machine they use for plasmapheresis and set to harvesting.

They kept me for two days after the harvest, to make sure they a) had enough stem cells to do the transplant and b) that I had survived the process and worked the chemo through my system. Catheters are a foul invention, truly, and nothing makes one feel quite so unclean as knowing that they are filled with a virulent poison.

But in the end they got enough stem cells that they could take a mulligan on their first try and still transplant me if they wished. I was discharged, with a supply of Neupogen that would have to be injected into my abdomen on a daily basis, and a laundry list of precautions to take.

A week later my hair began falling out. I last paid for a haircut in grade 8. I have had long hair and a beard since I was fourteen. I had my brother shave my head with my beard trimmer, and my beard though it did not fall out entirely went patchy and mangy. I refused to shave that, though. I've lost enough of myself.

Two years to the day from the night I died I was back at the Ottawa General for my transplant. They hit me with the chemotherapy, a liter of Cyclophosphamide right into my jugular-dongle.

As an aside (another aside, yes) - the bags in which they store chemotherapy should not look so innocuous. They should look baleful. They should be black, with luminous green highlights and possibly a red hourglass. They should leave no doubt just what you are about to be injected with.

Shotgunning a liter of Cyclophosphamide was among the most unpleasant experiences I have had. That amount of fluid pumping right through my heart feels like being stamped on (as mentioned before) and with chemo there is the extra pleasure of knowing that I was being poisoned.

Chemo, for those who have not had the pleasure, is a brutal drug. My appetite evaporated, to the extent that in less than a week they were threatening me with a feeding tube. Everything took on a metallic/solvent taste, other flavours were so distorted that I literally could not stand them without instant nausea. I survived by choking down energy-drinks, mostly. It also comes with the death of just about everything in your g-i tract. When you are paraplegic diarrhoea is a terrifying prospect. My condition was, once more, utterly dehumanizing. Food was one of the few pleasures I had left and now that had been twisted into something deeply offensive to mind and body alike.

On the sixth of march they were satisfied with my white blood cell counts and other samples. They reseeded me with my stored stem cells. This was pretty painless, by comparison, but that does not mean I would repeat the experience.

I don't actually remember much of the three weeks I spent recovering. I read a good deal, I know that. I fought the arguments towards jamming a feeding tube down my throat. I tried to eat enough to stay alive. I avoided leaving my room because I was sans immune system and would stay that way for a good long while. I read through the list of things you need to keep in mind while you have no immune system. It's not a short list, but in brief you need to avoid sick people, a great many foodstuffs, having open wounds, etc, etc.

I was weak as a kitten for a month after getting home. Depression was my constant companion. I hated myself all the more for the pain and weakness and the fact that nothing tasted of anything but pine sol. At first I had weekly appointments with the BMT team at the Ottawa General. They would take blood, request urine samples (always fun when you're in a wheelchair... the one time a nurse requested a 'mid-stream' sample I told her I would be happy to oblige assuming she was willing to deal with the unavoidable mess that would entail) and check on my condition. My counts bounced back very quickly, and in short order they reduced it to bi-weekly visits, then monthly visits and finally in August they transitioned me out of the Bone Marrow Transplant program back to hematology/oncology. Eventually my taste buds recovered. Things tasted normal by early July.

The Federal Government, newly Liberal after Canadians ousted Reformacon Steven Harper, came out with its guidelines on assisted suicide. They are laughably narrow, self-evidently in contravention of the Supreme Court decision of 2015. Before they passed Parliament there were already lawsuits being assembled to fight them. As of this writing (9/3/2016) 118 Canadians have received an assisted suicide. Doctors relate that less than 1/10 of requests are accepted. There is no room for someone with my apparent health in the guidelines as written. No escape hatch for me until the court cases roll back through and the Government is forced to rewrite the legislation.

My hair is about an inch long now. Not that it matters since I haven't been able to look in a mirror in over two years now. I can go out in public, I can eat what I like without too much worry. Sometime this autumn my hematologist will contact my GP to begin a two year course of vaccinations because all my previous immunities died when they rebooted my immune system from factory backups. Not all vaccinations, though. I cannot, for instance, receive the vaccine for Shingles. So I will be on some level of medication for the rest of my life, to protect me from the illnesses my body cannot be inoculated against.

I lived through an autologous stem cell transplant. My hematologist suggests that my recovery will peak in three years from march. My neurologist agrees and wishes to schedule another electromyogram to see how my nerves are doing. Both have rosy outlooks based on how my body bounced back from chugging a bag of venom via the heart. Between them they have even managed to get me monthly visits from a chirpy physiotherapist to advise me on exercises to try and get my muscles and joints ready in case the nerves do recover (I do them more for something to do than any expectation of improvement, and grit my teeth through the agony). An attempt to wrap my feet to deal with the edema failed miserably, after two weeks the pain was so severe I could not even form thoughts, so compression stocking are... not an option. My feet and ankles are still dead and swollen. Neuropathy is still my constant companion. I am still dependent on a mechanical lift to get into my wheelchair. I am still dependent on my family for literally everything. I still have tremors in my hands. I still suffer from regular insomnia because reflection on my condition keeps my mind from sleep. I am still utterly reliant on Nabilone to be able to function at all, except when I hurt enough to take a slightly higher dose and am high enough that I do not trust my own judgement. I still am not sure why I bothered going through such a miserable process.

It did not kill me, but it sure as hell did not make me any stronger. Maybe that will change in time. Or maybe I'll be allowed to take the easy out I have been longing for since the third of March, 2014. I honestly don't know what tomorrow will bring, and (quel surprise) neither does any medical professional I have yet encountered. Insufficient data, too few cases, each one too unique.

So, even after the ASCT I am right where I was in July two years ago: in limbo, waiting to see if I will get better or get worse. Nothing has changed except that I have suffered a great deal. They probably cured the cancer. They probably dealt with the POEMS syndrome. Certainty is a coin that no one can offer me, and as someone who relies on reason because I lost faith in my teens uncertainty is deeply frustrating.

But uncertainty is where I live now. Trying to fill 24 hours a day is a challenge. I have no ambitions left, no drive or motivation for anything that I used to love. But I'm alive, at least in strictly medical terms.

When I do stop breathing, the rest of the world will have to admit what I knew two years ago: I died March 3rd, 2014. Years late to my own funeral.

* * * * *

(This blog is cross-posted from Daily Kos and the Monday Night Cancer Club Group, part one visible here, part two here, part three here, part four here)