I woke up this morning feeling like I had been kicked in the cajones. Men know that feeling. The dull, ache, nausea, but in my case not restricted to my testicles but radiating around to my lower back, seriously into both left and right groin, flowing down my quadriceps like setting cement until both legs felt rock hard and stiff.
The worst of it came only after I had gained my feet by assuming a pre-natal position, then dropping my legs off the edge of the bed to counter the weight of my body as I rolled into a sitting position, then reaching for the post (supporting the overhead beam) three feet from the edge of the bed and pulling myself up to stand. Gasp. Breathe. Ten minutes earlier I had asked Ruth to take one pill from my hydromorphone tablets and drop it into my mouth, then hold the water glass, half full, at my lips so that I could take a sip. I waited for the opioid to take some affect, but then I asked for a second.
Friday, February 17, 2023. It’s a process, not an event. I’m in the process of dying. Maybe. Maybe not. Maybe I can squeeze another year or two out of this life of mine. Can I hope for five years? Ten? I won’t know anything until my doctor’s appointment on the twenty-seventh of this month, ten days hence. Likely not even then. My doctor has a heavy accent, likely German, and he mumblers. He’s not a great communicator.
On this morning I had a commitment to drive Ruth to VIU, Vancouver Island University, to teach a class to visiting Japanese students. Remaining in bed was not an option, even if my bladder would have allowed it. I had to get up.
“Should I start your coffee water,” Ruth asked. I drink instant. Don’t judge. It’s what I like, and have liked ever since I read that it’s the coffee served in many five star hotels around the world, with the elite customers none the wiser. It’s just coffee.
“Yes please. I will be up.”
Ruth left the lights on so I wouldn’t go back to sleep and went upstairs to get her act together for her own struggle with consciousness. She hasn’t been feeling great herself for the past few days. Hopefully it’s just a cold. She had a Covid test last Monday, before joining me as support for my doctor’s appointment. Negative. So we know it isn’t that. I depend on her so much now. Depend on her both for physical and emotional support. This process ain’t easy. Not for anybody. Not for me, but perhaps even more so not for those who care about me, my family and close friends.
I have been dribbling out the following announcements for the past couple of weeks, ever since I came to a decision:
“In other news: Mark your calendar. May 15, 2023. Ruth and I had a talk the other night. Pending medical opinions, May 15 is the date I’ll request MAID, Medical Assistance in Dying. If these last few weeks are what my life is about, the party is over and I want out. That should give everybody time to get used to the idea, including me. Please keep the date under your hat, pending a formal announcement, pending conversations with my doctors, but the paperwork’s been done. It feels good to come to clarity.”
The first to get this news was my older sister, Catherine, eighteen months my senior. I told her first because we have discussed this eventuality extensively over the years. I could be confident that she would not play into the dramatics of the situation.
Her response: “I respect your decision but do hope you will wait until you get a more definite diagnosis from your Doctor. If this is what you fear it is and there is no chance of recovery okay I totally understand. There is really no way to soften this. It is a very final solution . I am the oldest of 5 and always hoped I would not outlive any of my siblings.️ (heart emogi, U.)”
The most recent recipient, yesterday, following the same message to my two boys and my daughter, went to my American friend, Danny, still living in China which is where I met him during our first year working in that country. I delayed giving Danny the news because I knew he wouldn’t want to hear it. “Hey David, just outside now. Gonna take me some time to digest the above. (Frowning emogi.) I’ll check in with you in a bit.”
Danny and I play Xiang Qi over zoom most weekends, making allowance for the time difference between here and China. A few years ago, I flew to Thailand while he would be there on business. Seventeen years of talking trash over Chinese chess should leave a hole to get over. People I hope will have a hard time letting me go with grace and maturity and courage, the strongest and most mature of them all being Ruth, my wife, my support, my love.
I’m back from driving Ruth to work now and walking the dog so he could have a pee before bringing him into the house. It’s a beautiful Nanaimo morning here. The scotch mist felt like putting my face over the vegetables in the super market as I let Enzo Lorenzo Barkinton Ferrari of the Manitoba Barkintons sniff the damp winter grass and empty his bladder.
Before we went in to the house we had a chance to introduce ourselves to Inge and her dignified, elderly and deaf, collie, Suki. Out for their daily morning walk past our home. Their passing always sets Enzo into a hysterical frenzy until I let him approach Suki for a peremptory butt sniff, which she ignores and he quickly catalogues as not of mating age. I do love this neighborhood.
And now I can feel the 18 mgs of hydromorphne starting to wear off. The drug has allowed me to type this much in relative comfort, but it’s time to take a break. I have a few things to do before the pain roars back. To be continued.
Why the pain? That’s the question… How did I get into this situation, counting my pills until I can get to talk to a doctor who holds power over my pain level. Well, when we first learned that my prostate cancer had metastasized into the bones of my pelvis and into lymph glands up into my neck, we assumed the worst and over-reacted. We went on our tour to Scotland. I gave away my Italian violin. I went into the palliative care program and settled down to wait for the inevitable.
After three, almost four, years of monthly attention from the cancer doctors and the support community, my cancer seemed to be under control. My PSA, Prostate Specific Antigen, number has been down into decimals, indicating no activity by the tumors. I’ve been taking the latest cancer drug, apalutamide trade named Erleada. I’ve lost my body hair and been returned to a prepubescent state. I was on a very low maintenance dose of hydromorphone, trade named Dilaudid. But I couldn’t leave well enough alone. I couldn’t tell whether my pain was a result of the cancer, or just the standard aches and pains of old age. So I asked the palliative care treatment doctor to wean me off the hydromorphone so we could see what would happen. I did not want to be on the opioids, with my brain wrapped in cotton baton.
Big mistake. I was free of the opioids for two or three months when the pain in my lower back started to build. I tried to call the palliative care doctor and had a terrible time getting a number for her. I left messages. She didn’t call me back. Finally her nurse called with the news that I’ve been discharged from palliative care. If I want back on the meds, I need to see my family doctor.
It usually takes at least a month to get an appointment with my family doctor. Fortunately, he’d had a cancellation and I got in to see him in less than a week. He gave me a very small prescription for the hydromorphone, set up an appointment for the end of this month, and sent me to get an xray of my lower back and left groin. This was still days before the pain crisis that sent me to emergency.
The next morning I hobbled in to the imaging center, endured the required positions on my back and side, then went home for a quiet weekend, only to go into full blown pain crisis Monday evening. Never have I ever ….. Screaming pain. Pain in my pelvis and lower back, radiating down into my legs and flashing up into my mid back and neck and shoulders. I called the 811 medical advice line and talked to a very nice nurse who told me to go to emergency at the hospital. We did that. They injected me with something, gave me something else to swallow, gave me a prescription for hydromorphone and something called gabapentine. The pain was more or less under control. That was when the emergency doctor looked at my back xray and I learned that I have a small compression fracture in my lumbar vertebrate. What the fuck? Where did that come from? Have my bones started to crumble for no reason. Up until now I’ve assumed that my bones are in good shape. I’ve had falls, but never any sign of a broken bone.
The drug prescription the hospital had given me was quickly evaporating. They had given me a prescription for hydromorphone and gabapentine, but a ridiculously small amount, not nearly enough to keep the pain under control until I see my doctor again at the end of the month. The gabapentine knocked me into zombie land, like a patient in “One Flew Over the Cuckoo’s Nest”. The clinic where my doctor worked said he was unavailable until his booked appointment but gave me a telephone appointment with another doctor. So I was sitting there with my phone, waiting for the call, when my phone chirped. The doctor’s call had gone straight to voice mail without ringing.
This is Canada. I don’t pay for doctor’s appointments unless I miss one. The last time this had happened, my phone going straight to voice mail without ringing, my doctor tried to bill me thirty bucks for a missed appointment. I refused to pay, on the grounds that I hadn’t missed the appointment, and let the clinic know that I will only take face to face appointments from now on. The clinic is only five minutes from our home, after all. I’d rather sit in their waiting room than have them assume I’m missing appointments. When it happened this time I jumped in the car and drove to the clinic. Then found another doctor who could see me.
This doctor made it very clear that she wasn’t interested in my medical history. That was for my family doctor. She wrote out a prescription for hydromorphone and gavapentin. She made clear that this was the same prescription my doctor had given me, which meant that it was also inadequate to get me to the appointment date.
This time when I took the gavapentin it knocked me into convulsions. Each pill was four times the dose of the pills given to me by the hospital. It scared me. No way I’m taking that stuff, so I must depend on the hydromorphone. These are four mg. tablets with instructions to take one tablet three times a day. The effect wears off in about an hour. I’ve been told to keep the pain under control, to not let it get away on me, because it’s much harder to bring it back down that to keep it controlled. Obviously, one short acting tablet three times a day is not going to do this. By my calculations, I need fifteen tablets every day to get me through a day and a night with the pain under control. Fifty tablets, as the doctor prescribed, will last me three and a half days, not the ten remaining until my next appointment. I have six tablets left as I write this.
And now they have me looking like an addict seeing multiple doctors to try to scam more drugs to sell on the street. I resent this, but there’s not much I can do about it.
Yesterday, Ruth and I enjoyed a long zoom session with Panda, our “Chinese daughter”, with her Canadian husband and two beautiful children, Oliver, her boy, and Clover, the girl and recent arrival. I was hoping that my Chinese friend Lv Min could join that zoom session, but I missed her text and had to settle for a video call. Lv Min and her husband, Simon, were our students seventeen years ago. They now also have two beautiful boys, Lucas and Marcus, for whom I had the honour of suggesting a name. My heart swells with pride to think that they are still a part of my life.
Time line of events:
Thursday, November 3 In person visit with palliative care treatment doctor. At my request I was given a schedule to wean me off all pain medication with the intention of seeing how much of my pain was due to cancer and how much was due to normal old age.
Wednesday, January 11 First notice lower back pain and comment to Ruth.
Monday, January 16 appointment with chiropractor, gentle massage and plaster
Thursday, January 19 appointment with chiropractor, heat and gentle massage. Back pain getting worse.
Tuesday, January 24 appointment with chiropractor. Back pain worse yet.
Wednesday, January 25 attempt to call palliative care doctor. I’m not called back. Nurse calls to inform me that I have been discharged from palliative care program. If I want any drugs or support I must see my family doctor. This usually takes at least a month, but I luck out. My doctor has had a cancellation and I can get in to see him that day.
Wednesday, January 25 family doctor in person visit. I’m given prescription for 50 tablets of 4 mg. hydromorphone, told to get an x ray of my lower back and left groin.
Thursdy, January 26 I get in to get an xray of my lower back and left groin.
Monday, January 30 hospital emergency visit, pain crisis. Given injection in shoulder, two tablets of something, prescription for some hydromorphone and some gabapentin. Pain crisis brought under control.
Tuesday January 31, morning chiropractor visit. Lunch with Katherine and Roger. After lunch I realize I can’t find the prescription from the hospital. Panic. Search. Drive to hospital emergency and discover prescription lying in a puddle where Ruth had picked me up after my emergency visit. Whew.
Wednesday February 1 teeth cleaned.
Tuesday February 7, I call the clinic and ask for a doctor to call me back. Phone call from doctor goes straight to voice mail. I drive to clinic and wait for another doctor to become available. Given prescription for small number (50?) of tablets of 4mb. hydromorphone. Plus a preseciption of 30 tablets of gabapentin which can’t be fulfilled at Shoppers Drug because of system problem.. Follow up appointment set for Feb. 13.
Monday, February 13. Doctor followup appointment. Ruth accompanies me. Given prescription for 50 tabs of 4mg. hydromorphone. Replacement prescription for gabapentin issued. I take both prescriptions to London drugs, then drive Ruth to VIU for work.
I return to pick up prescriptions, then go to Felder Machinery to buy a new table saw. Returning home I take one of the gabapentin tablets. Never again. Terrifying. Muscle spasms. Shakes.
It is now Monday, February 20. I have six of the 4mg. hydromorphone to last me until I hear from a doctor tomorrow, or go in to emergency at the hospital. While my pain level right now is about a two out of ten, I’m feeling scared.
End of time line.
I was greatly conflicted about the table saw purchase, and decide to sleep on it overnight and return it the next morning. The following morning I decided to keep it. It is a beautiful piece of equipment, amazing engineering with a system that locks the blade in a millisecond on contact with skin. If I’m going to get this pain under control and live past my announced date for requesting MAID, May 15, 2023, I will definitely want this saw. It gives me a glimmer of hope.
This saga of pain and suffering has become tedious and boring. Sorry about that. I’ve skipped the part about seeing a chiropractor, or battling constipation.
And my life still goes on. Maybe. It all depends on the pain control, eh. Dying is a process, not an event. I shall try to make it as good and easy as possible. One way or another, this cannot continue.
Stay tuned for updates as they happen.
Update February 22. Evening.
Yesterday I was in panic mode, the first day following a long weekend and I was I was down to my last, my very last, few tablets of hydromorphone, the only chemical between me and another pain crisis, another visit to the emergency department at the hospital. I needed to see a doctor. The word “desperate” was shaping my mental reality. I don’t like being desperate. Desperate people make very bad decisions. Desperate people are not cool. Desperate people are the very opposite of cool. Desperate people rob banks, or pharmacies, or buy street drugs of unknown provenance, adding their name to the long list people who have died in the past year from the ongoing overdose crisis in this part of the world, a list that includes my daughter’s fiance who died a few years ago from this very crisis.
My first call to the clinic attempting to get an appointment with a doctor, the automatic answering machine voice informed me that the queue was full. Please call again later.
I tried again at noon, and got through to a real live human after only a twenty minute wait. This was a real live human who was willing to listen to my situation, sound sympathetic, and yes, invest some time into trying to solve my problem. While my doctor wasn’t available that day, the receptionist could squeeze me in to see him at noon today. This was cutting things too close for comfort. Frantically calculating my pill usage, I agreed that I’d have enough to make it until noon today. Okay. Success.
And even further success. A glance at Ruth’s schedule, posted in her office (brilliant woman) revealed that she was free to attend with me. I like that because as I mentioned, my doctor has an accent and, just maybe, my hearing is not what it used to be.
We woke up this morning to four more inches of wet snow. Since we’re only five minutes from the clinic, I assumed that we’d have plenty of time to free the car and be mobile by eleven forty-five. There was ice under the snow. The charging cable was frozen into the charging port. We hadn’t lifted the windshield wipers before turning in for the night last night, so of course the wipers were frozen down. You would think that with the urgency of my situation I would have allowed more time to get ready. You would think. But there you go. The little EV has great thawing ability. Despite tension and fear, we were on our way a mere five minutes behind schedule. Plenty of time for the drive. No problem finding parking a mere ten feet from the clinic door. No problem with masks or antiseptic gel. No problem anywhere.
The appointment itself was… pure wonderful. Dr. Olivier seemed a different person once I told him I’ve chosen a date for MAID. He gave me time. He calculated dosages. He accepted my requests without any argument. Unlike previous visits, he even seemed sympathetic. I think I even caught a smile.
We left his office comforted and I felt assured that my pain would be kept under control. Maybe I’ll even be able to postpone the May 15 death date by months, maybe even by years. Maybe the zoom celebration of life party can be postponed by the same amount.
Maybe I’ll get to live long enough to do a few things with my new table saw.
I took Ruth to lunch at the nearby sushi restaurant, our favourite, while we waited for the prescriptions to be prepared. Ruth dropped me and Enzo at our door before she went off to do some banking. He immediately went hysterical barking at the dog down the street and trying to pull my shoulder out of its socket.
Life seemed suddenly back to normal. I have no pain. Like Bill Hicks said, it’s just a ride. Ready for tomorrow, eh.
Thanks for reading. A comment would be welcome.
Update February 22. Morning.
And I’m up. As instructed by my doctor, I had one each of the timed released tablets of hydromorphone (one 12 mg and one 6 mg to reach the required dosage) before bed last night and one each of each this morning before coming up for coffee and breakfast. One thing I noticed last night when I awoke to pee: in the past I would wake up with my legs and groin soaked in sweat. A most uncomfortable situation. Last night and this morning? Dry’z a Bone, as the wet weather working gear was labeled during my teen years. (No boner, sadly. But I will take whatever I can get now.) It’s something.
Now I’m off to Google to find out whether hydromorphone would kill my puppy should he ever manage to get his teeth on a stray tablet. (No way would I ever get it out of his mouth should he get one. It would be game on, for sure. He’s not named Enzo Ferrari for nothing. ) And whether Noloxone would be an appropriate emergency treatment.
And again, thanks for reading. A comment would be welcome.
Update February 24. Almost Noon.
Dag Nabbit. I missed Danny’s call last night. It’s 3:20am there and Danny and his beautiful girlfriend are out singing karaoke. Maybe he can call me when he’s home again. Really would like a game.
I’m awake and close to pain free. Wonderful. Woot woot.
Update February 27, 8:45pm
I have no idea why, but somehow the process of dying doesn’t seem to be as smooth as I hoped. It seems I can expect good days and bad days. Yesterday was not exactly a bad day, but not a good day either. Today was not a good day. I’m taking far more of the hydromorphone than I want to be taking, with diminishing returns. Google has made everything confusing. I don’t really know which account I am in, what my user name should be, or which email address it will accept with associated password.
I’m constantly being told that I’m logged out, but I have no idea which program I was logged in to.
I’m too tired to work this out right now, so I’m off to join Ruth at the widescreen TV.
Thanks for the honest updates, hope you’re doing okay still now a week later…
Thanks, J.P. Thanks for your attention. I seem to have reached a state of stability, with each day feeling much the same as the previous. The jury is still out as to whether I stick to my May 15 date for MAID.
I had a bone scan on March 2. Hopefully that will tell me what I can expect in the future. Right now I get brief periods when I can be productive, either for writing or working in the shop. I’m still not sure whether this is enough, whether I want to look forward to years of a life like this. I suspect that it will grind me down until I say, “Enough”.