Bonsoir mesdames et monsieurs, welcome to the final installment of my time at the helm of MNCC. It’s been a difficult ride to get this far, but to all who have suffered along with me I thank you for taking the time to read. For those who are new here, my previous posts can be found here, here and here. Sometime tonight I will update the more-or-less final version and cross-post it to my blog, located there. As always I will be hanging around in the comments until I start to fade in the wee hours.
I believe that takes care of most of the fiddly business bits, so shall we be about it? Pull up some electrons and let’s bring this one home.
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Monday Night Cancer Club is a Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Here are the commitments for monthly diaries as it stands right now — please volunteer! We would greatly appreciate your input!
October — Quellist
November — tapu dali
December — ZenTrainer
January — peregrine kate
February — Pandora
March —
April —
As most of you may know, Monday Night Cancer Club has moved to a monthly cadence. Because of this, it is important to reinforce the sharing and community aspects of our group. If you click on the group tag, you will notice that the move to a monthly post doesn’t mean that there are only posts on the first Monday of each month. Entries are still posted to MNCC whenever they are shared or relevant.
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Most of what has been covered in the last three posts 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 strong desire to live I am just stubborn enough not to give up.
To prepare me for collection I was placed on a drug called Neupogen. This required a daily injection into my abdomen for two weeks prior. My hand tremors (and my loathing of needles) led me to ask my father to do the job. It is a long injection, a large amount of liquid through as fine a needle as you can imagine, and was not a particularly pleasant way to start the day. I have a tendency to bruise at injection sites, and after a week my abdomen was a mass of bruises in various shades from yellow-green to black-purple. Now and then I'd get particularly lucky and Dad would find a nerve, but after three days he was getting the hang of injecting it slowly.
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 in my family) 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 pickline through my arm, but I have uncooperative veins and the cardio-phlebotomist who dropped by module L (in his nice, red-pink scrubs and with his mask, spray visor and red smock) spent twenty minutes searching for veins. He left, and I have rarely seen a specialist look quite so defeated.
So necktubes it would be. At first they planned for what I had last time, a central line, then a Hickman, a porta-cath and finally a perma-cath. This is ~9 inches of tubing (and a sizeable gauge tubing too), 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 (I have been assured that this would be impractical, so it's for the best that no one would fetch me a hatchet and my crowbar).
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 to boot. I was, for a while, a living biohazard.
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 until the transplant, 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. When I was a scout leader some of the lads compared me to comic book guy from the Simpsons (I always preferred Viking Jesus as a comparison, but there you go). 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. It was still one more blow to my already shattered self-image. Looking back it felt like dropping shards of mirror into a mortar and pestle to grind them nice and fine.
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. They should, in point of fact, look like a venom sac. No one undergoing chemo has any illusions what is happening, but some of the concoctions look little different from a bag of saline.
Medicine has no sense of theatre.
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 I've 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 and humiliating 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. It was looking like a grim month at the least.
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 that much of the three weeks I spent recovering. I read a good deal, I know that. Between January and April of 2016 I reread all the Discworld novels and also most of Richard Stark's "Parker" series, as well as several Nero Wolfe mysteries and about a dozen of the Bolitho novels. I fought the arguments towards jamming a feeding tube down my throat (loudly). 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. At length they pronounced me healthy enough to return home.
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.
One side effect I had not expected was being cold. I normally run at a slightly higher-than-normal temperature (I’m a stocky guy of largely Northern European descent, I was built for harsh winters) but post-transplant I was cold all the time. Apparently (forgive me if I am misremembering) most of one’s body heat is caused by the ‘brown fat’ along the spine. Loss of some or most of that is, I was assured, normal post-transplant. The result is that for months I was cold even when I was sweating. I was very glad my sister had bought me a hoodie for Christmas. It has faux-sheepskin lining, so it’s like someone skinned a teddy bear for me to wear.
That sounded way more awful than I meant it to.
This period is also the time when the BMT team suggested (after suggestions from my family) I try Lexapro, an anti-depressant. My reaction was not good. After a month I was on the edge of a psychotic episode from sleep-deprivation. I would wake so sodden with sweat that I was chilled to the bone, and then spend half the day bundled up trying to warm myself. After five weeks I informed them I could not continue on that drug. My epistemological difficulties with mind-altering substances remain, and combined with my atypical drug reactions (seriously, night sweats was not on the list the pharmacy gave me, but anecdotal evidence bore out that I’m not alone) have convinced me not to repeat the experiment. Not yet at least. So that was Spring of 2016.
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 and of no use to me whatsoever. Before they passed Parliament there were already lawsuits being assembled to fight them. As of 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 vote failed me on this one. I won’t ever be voting Liberal again.
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 (back to the Sicilian jumprope). 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 of grinding joints).
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 stockings are... not an option. My feet and ankles are still dead and swollen (and tingly and covered in invisible ants and asleep… all at once). 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 as an Autologous Stem Cell Transplant.
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.
On the other hand, I have received the best medical care any Canadian citizen short of the PM or GG could ask for. I have bounced back from treatments that have killed weaker, sicker humans. I have regained control of my hands and fingers (to a modest standard) and I have the ability to use my knees for more than targets of my unending spite. I am better off now than I have been since that night I fell over. Small victories are still victories, right?
Uncertainty is where I live now. Trying to fill 24 hours a day is a challenge. My Lego habit is an average of 100 pieces a day (at the moment I'm awaiting a number of third party knockoff figures bought on e-bay, none of which Lego has actually produced). I have no recognizable ambitions left, no particular drive or motivation for anything that I used to love to do. It is hard not to focus on what I cannot do and remember what I can when the list of cannots starts with "get up and go to the bathroom unaided" and continues with "go for a walk." But I'm alive, at least in strictly medical terms. Ungrateful, at least some of the time, but alive.
Three years. If I'm very lucky, in three years time I will be turning 40 and learning to walk. I have an appointment this coming May at the Ottawa General Hospital's Rehab Centre, they did tell me I could come back when I show enough improvement to warrant it (that is, they said so before ushering me out the door with unseemly haste and then forgetting I existed). My hematologist and oncologist are plotting to gang up on them to force the issue sooner, because 9 months between appointment made and the assessment happening is... ridiculous. They both see more than enough improvement in my limbs to want me doing some really strenuous work right now, to keep my limbs working as well as possible in case my nerves do reknit. I... really don't want to go back to Rehab. I liked everyone there except my social worker (who is gone, but I curse her all the same) and the Head of the program, who acted as my doctor there and who was behind shoving me out the door before I had half of what I needed to manage at home. I understand their reasons (they are painfully underfunded, as is most of the health care system) but knowing and giving a damn are two different things and I still remember how disheartening it was when I was working so hard and he still lost all visible interest in my case. As though I was an inconvenient distraction from someone whose problems he could actually fix.
So I don't know if that is a good plan for me. In three years, or sooner, I will have to work very hard indeed if I want to ever walk again. Part of me wonders just what that will get me. What kind of life can I manage to put back together, after being so broken for so long? Why even bother, when I know that at the end of the road I'll end up right back where I started: flat on my back, slowly dying. It might be ten years, or twenty, or six months. I'll know when it happens, and that makes my life no different from anyone else's.
It feels ungrateful to accept all this aid and then turn around and ask for a needle and a nap instead but in my darker moments I still crave that easy, simple exit. Because having lived in fear and pain and despair for long enough, I've come to prefer the absolute, ironclad certainty of never hurting or feeling again that only death can bring. An end to pain seems like a high ambition some days, and a craven escape on others. We're still hashing that out, but at the moment the point is moot: even if I asked, I would not likely get what I wanted.
So for a little while longer at least I get to keep on soul-searching. Hunting for a reason or an excuse to wake up in the morning. Part of me wants to live. I recognize that. I wouldn't be here now if not for that. It's been awfully quiet on its reasons (worried I will trap it in a web of undeniable logic perhaps) but it's in there. There are things in this world I would miss. People I would miss. People who would miss me.
It's not easy. Every day is one more battlefield, and it's low-crawl all the way. Barbed wire, land mines, incoming fire... Memories, dead dreams, challenges of a crippled body. I've got supporting fire, in the form of my doctors. I have cavalry support in the shape of family. I have the odd letter from home in conversations with friends. I'm luckier than most, and I recognize that, but that doesn't make it easier.
I'm still moving forward, though. Clawing at the ground, some days, but still moving. I read a lot of poetry. Mostly Kipling (something of a family poet) but others as well. Lord Tennyson's Ulysses strikes me now and again:
“We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”
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.
But what the hell, I was never early to appointments when I was alive.
We'll see where I stand, three years hence.
~Fin… et une Commencement aussi~