@palliativecare

How Long Does He Have?

~ Roger JG Albert ~ 7 Comments

I don’t know, but I wonder if anyone has asked any of my family or friends that question about me. It’s a common question in movies or on television ‘medical’ dramas. Of course, it’s virtually impossible to answer that question unless the circumstances have been set up ahead of time to determine the time of anyone’s death. In most circumstances we just don’t know. In some we do. Maybe you have a gun and are about to shoot a hapless victim. In that circumstance, you would precisely know the day and time of your victim’s death. Somebody on death row in the U.S. would know when they were scheduled to die, but with all the appeals possible, some death row denizens have been there for sixteen years and more. Still, eventually appeals run out and off you go to the abattoir. Or you might get up in Toronto some dreary Monday morning expecting to spend the day dispensing cash and stamping statements as a teller in a bank downtown, only to be stabbed to death leaving a subway train at your usual stop.  

You might have come across the same story I did about the young woman (31) stabbed to death in the subway in Toronto on December 9that around 2 PM. I have no idea if she was a bank teller, that’s my invention, but it would be possible. The fact that she was stabbed at 2 PM is significant. There are many reasons why she would be out and about midday. Her killer, 52-year-old Neng Jia Jin, required a Mandarin translator for his court appearance and was given a list of people he was not to contact even though he was held in custody. He killed the victim, Vanessa Kurpiewska, randomly. Who expects to get up in the morning, get dressed, maybe make plans for the holidays, have a coffee, go off to work, take an afternoon break to do a little shopping, and end up dead on a subway train? On the same day the CBC reported a deadly shooting in Mississauga and every day the papers are happy to report on any number of random shootings and stabbings across the country and in the US. Regular, typical, unspectacular deaths generally appear under the radar, in the obituaries, not on the front pages. 

So, a significant number of people die randomly every day from any number of causes, some endemic, some violent, and all unpredictable. It may happen that I get surprised by my death, or at least by my dying. Probably not, but it’s not in the realm of the impossible. My palliative care team can track the deteriorations in my body, some of which are clear signs of impending death. Kidney failure is a sure sign of imminent death. When I came close to dying a month or so ago after my last chemo treatment, it was because my kidney was shutting down. That’s an indicator of major bodily shutdown. I remember clearly in the ER at the time that the docs asked us what we wanted to do if my kidney did shut down. We made it clear to them that no heroics were to be used to keep me alive. Palliative care doctors are really attuned to changes in the functions of major organs. I’m fortunate in that I have a strong heart and no indication of any cardio-vascular issues. 

We (Carolyn and I) drove to Campbell River last week to see an orthopaedic surgeon about the lytic lesion in my right femur. The palliative care docs flagged it as a potential major issue because it seemed to be growing. The orthopaedic surgeon, Deke Botsford, concluded that the changes that had occurred over the past few months in my femur would not likely cause a pathological break, that is one that would happen with no provocation (a fall, for instance). Anyway, we decided that I would get an X-ray in a month or so and that we would have another chat at that time. Fair enough. No problem for now.

I’m reading a book that was kindly given to me by a very thoughtful neighbour. It’s called: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix (2018). I’m almost finished it. Mannix is a physician and a Cognitive Behaviour Therapist (CBT). Her approach to death and dying is psychological and biological. My approach you will realize, if you’ve followed this blog at all, leans much more to the cultural, social, and anthropological side of things. Of course, I also inject lots of personal anecdotes and experiences. That’s where Mannix and I cross paths. Her book is a compendium of stories about the end-of-life experiences of a whole range of people of all ages in Britain. My blog is a mix of things, but it leans heavily on my experiences in hospitals, with medications, and with medical staff. Denial, for Mannix, refers to how individuals come to accept or reject the fact of their imminent death. For me, following Becker and others, denial is considered primarily a cultural phenomenon which rubs off on every one of us via religious or magical traditions and practices that we rely upon to convince us that we are immortal. Our traditions, practices, and protocols act as collective reinforcement of our beliefs in our immortality. Émile Durkheim, the first French sociologist and education theorist, wrote about the importance of what he called collective effervescence as an important structural component of social coherence. 

I guess if I have any institutional or cultural connections with denial mechanisms, they would be associated with science, especially physics and chemistry. If I have any belief about what happens to my body after I die, it’s that all the atoms and molecules that make up my body will return to the biosphere, to be taken up by organisms in their process of growth. My consciousness will evaporate to nothingness.  So, it goes. 

Not Dead (Just) Yet.

~ Roger JG Albert ~ 17 Comments

From the many comments I received after my last post A Time To Die I obviously left the impression that I was on my way to an imminent death. I guess the concept of ‘imminent’ is what the issue is. Without intervention I have no idea when I will die although I can set up a situation through Medical Assistance in Dying (MAID) whereby I can determine the time and place of my death. I’ve filled out the papers so that I now have the MAID option. The papers don’t obligate me in any way, and I don’t have to go through MAID if I choose not to. I don’t see any downside to being prepared by filling out the necessary paperwork well before I decide to use MAID or not.

This past weekend was a momentous one for me. I almost died for real, fulfilling the implied (somewhat exaggerated, certainly) conclusion of my last post.

After my infusion of Carfilzomib last Thursday, the first of my third cycle, I got some familiar symptoms: spiking fever, the shakes, insomnia, and pain, lots of pain everywhere in my body. By Friday morning I was in serious trouble. In spite of drinking copious amounts of water during the night, I could not pee, and didn’t even feel the urge to pee. It was obvious something was very wrong. At that point Carolyn called the Cancer Care Centre at the hospital. They advised her to get me to the ER as soon as possible. So, off we went. The Emerg staff got to work on me without delay, wheeling me into a room close to the nursing station, a room I had been in before on a previous occasion for the same reason.

They ran numerous blood and urine tests. They concluded that my kidney was functioning at less than fifty percent capacity. They installed a catheter and hooked me up for an infusion of liquids (lactated ringers). The ER doctor minced no words (strange turn of phrase) in telling us how close I was to dying. I filled bag after bag of concentrated dark and thick tea-coloured pee. I was formally admitted later in the evening and transported to the third floor, again to a familiar room across from the nursing station. Once there, my kidney quickly rebounded and resumed its more or less normal operation. By Sunday evening, after the staff was ensured that I had no infection and that my ordeal had been brought on strictly by an adverse reaction to Carfilzomib, I was discharged. The intent was to keep me in the hospital until Monday, but that was unnecessary at that point. I called Carolyn and she picked me up. I was one happy guy.

As I write this it’s Tuesday morning, September 20th around 9:20 AM. I feel that I’m slowly recovering from the weekend’s trauma, as much as an old man with myeloma can.

One thing I vividly recall from my three days in the hospital is that the many clocks all run on time, marking the seconds by the slightest but silent advance of the second hand. For long periods of time I was fixated on the clock and its inexorable movement forward. Sunday evening all I could think about was going home. The clock couldn’t move fast enough.

Another thing I recall is the change in my body odor. I was quite surprised by this. I shouldn’t have been because my entire body chemistry was under assault. I tried to wash frequently but being attached to my ‘med pole’ I called Ted made it very difficult to move around and get to the washroom. Of course, with my catheter I didn’t have to worry about going to the washroom to pee. That was kind of nice, actually.

Anyway, I should get to the crux of the matter here. I’ve decided that I can no longer continue receiving chemotherapy. Clearly it was killing me. In 2019 chemotherapy was offered to me as a way of mitigating the effects of myeloma. Instead, it exacerbated them for me. That’s not true of everyone receiving chemotherapy for myeloma or for other forms of cancer. Chemotherapy works for many people. I’m just one of the unlucky ones who has adverse reactions to chemo drugs, and I mean all chemo drugs. So now, I am palliative. I may still receive some treatment for my myeloma but it won’t be chemotherapy. It may be radiation or surgery, but even those options will have their limits.

I’m so fortunate in having very supportive family and friends. Our daughters came over from Vancouver on Friday to be with their mom and to come visit me. Coming from Vancouver with no ferry reservations is daunting, but I’m sure happy that they managed to get over here. It was definitely touch and go for me. I needed the support, so did Carolyn. My sister Hélène and her husband Roger came for a visit on Saturday. That was very pleasant and a welcome diversion from the hospital routine.

In conclusion, I must say that I received most excellent treatment at the Hospital this time around. That hasn’t always been the case, but this time we were very impressed by the care I received. Thank you so much CVH staff!

#70 Fun With Meds.

~ Roger JG Albert ~ 11 Comments

I’m finally able to write a few paragraphs. My neck has been such a problem lately that I haven’t been able to write much or draw and paint much either. It’s because my neck gets spasms easily if I look down at the computer screen for too long. Ten minutes at a time is about all I can handle. However, I remembered that acetaminophen works quite well for neck pain. I took a couple last night for my arthritis and degenerative disks in my neck and that seemed to help. I took a couple at around 8 AM this morning and now, although I still have neck pain, it’s manageable. We’ll see how long it works. I want to go outside and play.

Funny how I used to take acetaminophen regularly for some kinds of pain and it worked marginally well. Then I forgot about it when I got into stronger meds after my cancer diagnosis. Hydromorphone is my go to pain reliever now, but I’m also taking a low dose of gabapentin on the advice of my palliative care docs.

Palliative care docs are specialists in pain management. They often get linked with end-of-life care, but their mandate is much broader than that and is tied to pain management generally. We talk every week, usually on Wednesdays always working to fine tune my meds to balance pain with my need to be able to do some activity. Of course, as my pain doc told me this week they could easily make me pain free. I’d be pretty much catatonic though so we’ll probably save that for when I’m closer to dying. No, the objective with my pain docs is to balance pain management with quality of life.

I must say that lately it’s been a bit of an odd dance. We tried nortriptyline but it made me excessively sleepy without doing much to lessen my pain levels. We tried a really low dose of gabapentin. That hasn’t seemed to have worked very well so we’re now increasing my dose of gabapentin to a bit of a higher dose to see if that makes a difference. That’s always on top of my basic hydromorphone slow release tablets that I take morning and evening.

I suggested to my pain doc yesterday that I should just go off of all pain meds to just see what happens. She said that I probably shouldn’t do that because the pain would be unbearable without some intervention. I have to agree, but it’s frustrating. It’s hard to know which med is doing what when I take a cocktail of meds. It would be simple to back off to just one med, but that wouldn’t work either because as I noted before, neurological pain is different from muscle pain with is different from bone pain, arthritis and disk disease. I need different meds for the various kinds of pain I have so a cocktail is required. Simple would be nice, but it’s not practical.

So, I sit here now banging away on my computer keyboard. My neck pain is manageable but really annoying. I’m hoping the increased dose of gabapentin will deal with the neurological pain I have in my legs, but we’ll see. It takes a while to kick in. I’ve had two MRIs this week. The first one was on Monday and imaged my lower back. The one yesterday was for my upper back and neck. I’m not sure how they may help with diagnosis or with determining what drugs will work for me, but at least they will give us a good baseline for subsequent tests.

I’ve been thinking a lot lately about the time I have left. I have incurable cancer so it’s like I’m on death row waiting to see if my next appeal (chemo course) works or not. I’m technically in remission right now. We’ll know in January how that’s going. I’m scheduled for blood tests on January 5th, the day after my 74th birthday. That will mark seven months that I’ve been off of chemotherapy. I hope those little bastard myeloma proteins take a long vacation and I can stay off of chemo for a while longer.

Inevitably though, chemo won’t work anymore and that will be that. Bring on the morphine and call in hospice and MAID people at that point. When I get to the point that I can’t DO anything anymore, I will probably welcome my exit from this mortal coil. The thing I regret is putting my family through a long, prolonged, slow exit. Maybe it would be better to pull the plug sooner than later. But I’m not ready to make that decision. So, we carry on, balancing meds, counting on chemo to beat back the myeloma proteins when they get out of hand, and hoping for the best.

I haven’t written at all about politics lately. I’m tempted to, but my neck pain may decide how much I can write, draw and paint. Politics is fun, but it’s not at the top of my list of priorities at the moment. Cancer has a way of focussing my attention narrowly on my life and possibility. I’m still interested in BC politics, Trump, etcetera, but they just aren’t centre of mind like they used to be for me when I was teaching. The pandemic is close to mind too, of course. I’d love to see my family as much as I can. Covid makes that impossible. Cancer and Covid are dominating my life right now. Not the best of scenarios, but I do have Carolyn to commiserate with and to share my Covid isolation.

I’m not sure how we can talk about happiness in the circumstances we are in. I’m not happy about any of this shit but that doesn’t help much either. It’s just that how in hell can anybody be happy right now?

59 Perturbatious Times (and wee bugs)

~ Roger JG Albert ~ 4 Comments

So, the last three weeks since my last post have been momentous (for me) because, as I’ve noted before, I was faced with the devil’s choice of carrying on with the chemotherapy that was sapping my mobility, or of putting my chemo into abeyance. It’s been very stressful for me and for my family, especially for Carolyn.

Before I get into my decision and the reasons for it, I just want to say that I’ve had really incredible support from the oncology staff at the hospital, as well as from the palliative care staff, especially Dr. Marie-Clare Hopwood and Adele, one of the nurses at the Centre. Pain is a huge issue and a major hindrance for healing. The challenge for palliative care staff is to manage pain in the face of severe illness.

That’s where I come in. I provide the pain, they provide the relief. Ideally, at least.

Well, I’m pleased to say that in some ways, with certain aspects of my pain, I’m getting some relief with the helpful prescription writing skills that Dr. Hopwood brings to the table. It turns out (and I’ve probably already told you this) that opiates, including hydromorphone, are not much good at attenuating neuropathic pain, that is pain that originates in the nervous system. Most of my pain over the past couple of months has been dominated by neuropathic pain in my back and legs. It turns out the neural systems in my back and legs aren’t doing a great job of controlling the large muscles of my lower body. Fact is, the muscles in my legs dance constantly with fasciculations.* You may experience the odd fasciculation, but my legs are alive with them to the point where my legs have less than ideal control coming from the nerves that are supposed to make them move without us thinking about it, I lose my balance constantly, and use two canes to walk.

How often do you get a house call from a doctor?

Well, Dr. Hopwood and Adele came over to the house a few days ago for a consultation. We all sat on the deck at a proper distance apart and Adele and Dr. Hopwood wore face masks. We talked for quite some time before Dr. Hopwood arrived at a strategy to help with the pain in my back and legs. I won’t get into details, but it doesn’t involve more opiates. I’ve been on the regime that Dr. Hopwood recommended for almost a week now and it’s going well so far. I have other pain issues, but they have to be resolved in other ways. More on that later.

This past Wednesday during a regular consultation with my GP oncologist, Dr. Bakshi, I put it to him that I felt my mobility was being severely compromised and that my quality of life was being significantly eroded, especially in the last two months or so. For instance, over the past couple of months my legs have given way on me four times and I’ve found myself on the ground with no ability to get up. Thankfully, there was always somebody with me to help me get back up.

I told him I was seriously considering abandoning my current course of chemo. I was gratified to find that he was in complete sympathy with me. He said that I had successfully completed more than 80% of my suggested nine cycles of chemotherapy which would have taken me to October 6th. So, I made the decision to put my chemo into abeyance. What does that mean?

Well, it means that I’m off chemo for the foreseeable future. My last blood work shows that my blood is normal with very little paraprotein, good liver and kidney function. Now we just have to wait to see when the myeloma will again haunt my bones, veins, and arteries, because it surely will. It’s just a matter of time. Of course, I still have intense neurological pain and severe weakness in my legs. That won’t go away any time soon, if ever. We just have to wait and see.

*A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome. (Wikipedia)

Now for some wee bugs. I bought a 1000 power microscope on the internet that is pretty cheap but operates in conjunction with an app on my iPhone. It takes photos and videos. I find it fascinating that this little microscope can ‘see’ things I can’t see at all with my naked eye. I may use some of these photos as a basis for art work.

I caught these little guys at very high magnification on the backside of wisteria leaves. I have no idea what they are called. Any idea? I think they’re mites, but ???