Interesting Couple of Days

Yes, interesting couple of days. I’m on a dex high right now after taking my week’s worth of chemo meds yesterday. Good time to write. For those of you who have been reading my blog, you’ll know that dex (dexamethasone) gets me stoned like I’m on twenty cups of good medium coffee. I get the shakes with it too. It’s a little difficult to keep my fingers on the right keys on my laptop. Still, it works for me.

Wow, how my life has changed in just a few months since my diagnosis. Again, for those of you who have been following me along over the past few months you’ll know that my diagnosis just confirmed for us that I was pretty sick for a long time, unable to do things I so enjoyed like drawing, printmaking, going out, working on non-profit boards including the board of the Cumberland Museum and Archives. The Museum Board is a great board and I’m hoping to get back to active involvement in a reasonable time, but to be realistic, it probably won’t be for a while yet. I need to figure out lots of things, including how much I can back off my pain meds and still be okay.

Because oncologists deal with organic disease, they don’t deal well with pain, which, as I’ve noted often in my past blog posts, is invisible and difficult to diagnose. I think that if doctors have themselves been touched by pain issues, either themselves or members of their families, they may have a better understanding of what people in pain experience. My orthopaedic surgeon came right out and told me that Western medicine isn’t good with pain.

No wonder so many people turn to alternatives to deal with pain, physical or psychic, even though there is no science behind their use. Simply, put all forms of medicine, effective or not can’t deal with the huge, overwhelming elephant in the room: death. Medicine, by definition, is about healing the body. There is no healing death. Faced with that wall of immovability, we as individuals grasp at straws. Some of us, I daresay many of us not captured by the statistics, turn to non-medical solutions to pain management. The most turned to alternative to modern medicines of all kinds is alcohol. It’s cheap, it’s legally available, and if you don’t push the social and legal boundaries around its use, you’ll be okay. You’ll be able to avoid opprobrium and jail. Of course, there’s a lot of controversy about addiction, its sources and possible solutions to substance abuse, but the reality is that mental illness is a huge part of the equation and underlies much of the ‘problems’ we humans have in dealing with life and its many challenges.

Gabor Maté

I’m with Gabor Maté when he argues that much of mental illness is engendered by early life trauma mixed with underlying facilitating organic, physiological, even cellular level factors. There is no doubt that genetics play a role in determining quality of life as it relates to pain and suffering. Maté argues that no issue is more relevant than early childhood trauma in determining how we deal with pain in later life. I don’t know if Maté’s argument will ever win the day, but if it does, you should be able to walk into your doctor’s office and expect to be asked right off: “Tell me about what it was like for you as a child. Tell me about your mom and dad. How did you get along with them.” I’m so tempted to write up a short(ish) questionnaire to address some of the issues around parent/child relations in early life. Somebody has probably already done it, but I haven’t done enough research to figure it out and besides, I have ideas of my own to test out. In any case, back to my main point in writing this blog post.

Dr. Fehlau

Wednesday at 1PM, Carolyn and I went to the hospital to meet with the staff in the Palliative Symptoms Management Clinic (or something like that). We met with the nurse, Adele (not sure I ever got her family name) and Dr. Barbara Fehlau, Inc. Dr. Fehlau used to work at the clinic where my family doctor is located in Comox. Now she works full time in palliative care and pain management using whatever techniques she finds useful which she proudly notes she found travelling all over the world. She didn’t say so specifically, but she alluded to the fact that modern Western medicine is pretty good at using drugs to deal with pain issues but lousy at any other treatment protocols. She has a pain clinic where she uses a range of techniques to alleviate pain including acupuncture. She’s a very strong proponent of meditation and says she meditates for forty minutes in the early morning and another forty minutes before bedtime. I used to meditate every day and for some unfathomable reason stopped. I have opinions about meditation and other ‘mindfulness’ activities but they will have to wait to be expressed in another post. In any case, Dr. Fehlau is calm, very controlled, and I am cautiously optimistic. She has a personal history of dealing with pain and told us that she was about to get knee replacement surgery. I’ve been to the pain clinic in Nanaimo and that worked to some extent but I’m still dogged by pain. The myeloma isn’t helping of course.

Okay, so now what? Well, Dr. Fehlau told me to call her clinic and get in to see her there so she could do some interventions. Then she talked about end of life issues and asked me if I was aware of the services offered in the Valley around end of life palliative care, MAID, etcetera. I said that I did know some things but there’s always more that can be learned. I’ll get on that.

Speaking of souls, do I have a belief system? She asked me about my belief system and if I had beliefs that some people find comforting as death approaches like a fast train in the dark. I said ‘physics’, that’s my belief system if I can even say I have any kind of belief system. I was never big on ‘soul’ music. Oh, I think that we humans are extremely creative in coming up with ways of finding some sense in death and the creation of the ‘soul’ is one of those. Whatever rocks your boat, as far as I’m concerned. Maybe it’s time I explain more about my philosophy of life, but it will have to wait too, getting in line with my ideas about meditation and other ‘mindfulness’ strategies.

So, now I’m back in my bed, staring at the ceiling with the light filtering through the blinds at the head of our bed. Dr. Fehlau, knows that I’m on the death train because of the myeloma I have and she is clear that my future can be counted now in months rather than years. Pain is one thing. Strategies for making peace with life when I have very little left is another thing. And what about Carolyn, Marika and Arianne. Carolyn is the love of my life and my daughters are very near and dear to me. I need them to be involved in the process of my dying but it’s not easy. Carolyn, being the person that she is, has been thinking a lot about what it means for me to die at home. She’ll need some help, but she can speak for herself around these issues. Help is available for respite and home support. Carolyn has to think about life without me too. She’s five years younger than me so that’s an advantage right there. With some help she may even be able to continue to live where we do now if that’s what she wants. Unfortunately it’s impossible to make too many plans too far ahead, but there are preparations that, made now, will help a lot when the time comes.

I may be premature in thinking about these things, but I really can’t help myself. I need to know. Do I want to consider Medical Aid In Dying? You bet. If if comes to that. One thing though: I am now connected to some of the end of life services in the Valley through Community Home Care. That’s a new one for me. Man, there’s so much to learn about dying!

Addendum:

This post is already long enough but I can’t help giving you a taste of how our daily conversations go these days. They would be completely incomprehensible to people not ‘informed’. So here is a typical early morning talk. Me and Carolyn.

Carolyn: How did you sleep?

Me: Well, last night Ben rocked me to sleep while looking after the issues around my injection site. I slept from 11:30 until 6:30 straight.

Carolyn: That’s great! So you talked about changing your hydro routine. What do you want to do about that?

Me: I’m thinking of taking two breakthroughs this morning then another two around mid-afternoon while I wait for Dr. Fehlau’s 4.5 prescription to come in. That should keep me going until eight when I can take a six slow-release. The dex is kicking in. Sleep tonight could be a challenge. The cyclo will slam me down though, counterbalancing the dex. The Duc has to do its work too. I’ll see about going poo earlier in the evening so that I don’t have to get up during the night. Maybe Ben can come help me sleep too. We’ll see.

[Carolyn is off this morning to pick up a prescription for me and to take care of some Museum business. We talk about the Museum a lot too and about other things. Come to think of it, I think some of those conversations would also be incomprehensible to the ‘uninformed.’]

See ya later.

Looking in the Mirror.

When I look in the mirror I see an old man. I don’t see an old man with cancer. I just see an old man with a white beard, not much hair, and wrinkly skin. Melanoma (skin cancer) often leaves visible, sometimes unsightly and disfiguring lesions. I don’t have melanoma, although my father did. No, I have myeloma (bone marrow cancer) and its damage is all done on the inside, invisibly. So, I guess I can keep expecting people who see me say: “Wow, you’re looking good!” I guess I DO look good! Now, the last thing I want is to discourage people from telling me how good I look, so keep it up! However, the invisibility of my condition is deceiving. I remember when I was a kid my friends and I used to work on our cars. That was still possible when I was a kid. Often we’d stand around looking into the engine compartment (often of my 1956 Pontiac four-door hardtop) wondering what could possibly be wrong as if just staring at the engine would give us some kind of clue. The engine was always sparkly clean and there was nothing obviously gone awry. If I had money by some quirk of circumstance I might take the car to a mechanic. If not, we might borrow my dad’s tools and start taking things apart. That usually ended up badly. Yes, the most undesirable conditions in life are often on the inside, impossible to see or diagnose by just looking at the person or car in question. I find it best to consult mechanics when our car shows signs of disfunction. I find it best to consult medical specialists for treatment related to my body. I guess I could try to treat myself using any number of the ‘cures’ available on Dr. Google, but I would like to live a while longer, thanks. Besides, I’m not that desperate.

Speaking of medical specialists, we saw my local oncologist today. I see him every five weeks. The result of our visit is that I will carry on with a second course of chemotherapy. We’ll evaluate how well it went in five weeks. My first course of treatment seems to have gone as well as could be expected. The little excavator in my bone marrow is slowly running out of gas and my red blood cell garden is growing again. I’m still exhausted and that won’t change for some time yet, but things are certainly going in the right direction for now. I think I just might be a model patient. So, where does this all leave me?

Well, I may be on my way towards remission. If and when I do go into remission, and that’s by no means guaranteed at this point, that would buy me some time. By that I mean that I may have a few years more to live, though inevitably, either the myeloma will kill me or some other condition will. I won’t be walking away from this situation, brush the dust from my sleeves and carry on. No, I’m on a one way street. So are you, of course, but I can see that damned barrier at the end of the street. I’m hoping that you’re still far enough away from it that you can live in blissful denial for a while longer. I don’t have that luxury. So now what do I do with my life?

That question came up in a recent Facebook thread, albeit expressed in a different way, but with the same effect, I believe. The question comes down to this: If you knew that you had a given amount of time left to live (six months, two years, whatever), what would you do with your time? Would you to be seized by an overwhelming sense of urgency? Would you be determined to cram as much activity and experience into your remaining time as possible? Or would you curl up in a fetal position in a corner of your bedroom quivering and whimpering while you await your inevitable demise? If you have the money and the energy you might want to get out there and travel the world. If you have a spouse, that might complicate things more or less because they may not want the same things you do and may not want to get caught up in your sense of urgency. The last thing you need when facing terminal cancer is marital discord. I think there’s a lot to be said for just carrying on with life as before.

If you have the energy and the money then good on ya. If you travelled a lot before your diagnosis then travel after. Your eventual energy deficits will tell you when to stop. If you were fairly sedentary, more into being at home and puttering around the yard, then that would be something you might want to continue doing. The stress of travel may not be that good for you. Looking around the Cancer Centre at the North Island Hospital this morning I didn’t see a lot of people with obvious enough vigour to engage in a lot of physical activity. In any case, back to my situation.

My exhaustion prevents me from doing much in the way of physical activity. If I do go for a walk I pay for it later. Travelling is impossible. At one point I thought it might be possible, say, to take a direct flight to Puerto Vallarta back and forth from Comox, but there are a number of contingencies that make that next to impossible that have more to do with arthritis and disk degeneration than cancer. Besides, I take chemo drugs once a week orally but also by injection at the hospital. For three or four days after I take my meds I feel crappy, really crappy so the chances of enjoying myself on a beach somewhere are slim to none.

So what do I want to do, and what do I actually do? Well, I want to work on our canoe, finish some paintings, do odd jobs around the property and visit family and friends in Vancouver and further afield. What I actually do is sit and lie down a lot. As I sit and lie down, I read, and sometimes I even write. At the moment I’m reading social history around the Middle Ages and doing a bit of research on my family roots in Normandy. That’s something I would have done anyway, but I do miss working in my shop and studio and going for long walks with Carolyn and our imaginary dog. My oncologist thinks I will regain my energy, at least as much as an old man can expect. If so, that would be great. I’d love to get back to canoeing, camping and puttering.

When I get closer to dying I will know it, and I expect I will have time to think about it, but there really isn’t much thinking that is productive about dying, at least not for me. I’ll know when it’s time for palliative care. I don’t want to live as long as the oncologists might want to keep me alive. I’ll make the decision when the time comes. I don’t think it will be a really hard decision. I know that beginnings are impossible without endings. My ending is a lot closer now than my beginning! That’s fine. Frankly, I’m much more concerned with my family than I am with myself. They are the ones left behind to mourn. But both of my parents are dead and we got on with life after their deaths. My family will do the same when I’m gone. That’s what we do as humans. Like it or not, accept it or not, rage against it or cower in a dark corner, the end result is the same. Don’t sweat it.

Grinding It Out

My oncologist called this past Wednesday to discuss changing my chemo cocktail. The one I had been on for less than a week caused a very bad rash around my whole midsection along with a mild fever. So, I stopped taking that set of meds and am now waiting for word from the pharmacy here at the hospital telling me that my new meds have arrived. I’ve got appointments lined up for the first week of December, but I may be called to come in earlier. It’s all par for the course. Hurry up and wait.

Thing is, this new set of meds has caused some pretty significant side effects for a couple of people I know with myeloma. We’ll have to keep a close watch on symptoms, especially those related to peripheral neuropathy. Can’t say I’m looking forward to the new meds but then again, I’m not too sure what the alternatives would be. I’ve sometimes thought about what would happen if I turned down any and all chemo. I know that there are drugs that are more palliative than chemo and I seriously wonder how many more years of good quality life I could get out of benign neglect rather than with aggressive intervention. These are just things I think about late at night when I’m falling asleep along with visualizing my death bed.

I’ve been reading Barbara Ehrenreich’s book Natural Causes. She’s a couple of years older than me and had a malignant tumour removed from a breast some time ago. She’s fit, she’s healthy but she also writes that: “I gradually came to realize that I was old enough to die.” She means that she’s had a good life, a fulfilling life, which is much more than is afforded many of us. She notes that the military considers eighteen year olds old enough to die and that there is no ‘best before date’ stamped on our asses. Some political leaders lead well into their eighties and nineties. That said, there is a time, when we reach seventy or so years of age when our obituary is likely to read “died of natural causes” than anything else. At a certain age, she argues, there is no need for an explanation for dying. It’s okay to die. Of course we should expect to die. Dying is as natural as being born although we generally consider it a travesty and a high order insult to life. I visualize myself dying, but I’m not convinced that the visualization can ever be very accurate. The closest I can come to visualizing the end of my life is when I’ve had a general anesthetic. Under a general anesthetic, the first drug they administer puts one under, makes one unconscious. If that’s the way I’m going to go, I can live with that. I watched as they put our last dog Wilco down a year ago August. First the sedative, then the lethal dose of whatever it is that kills. That kind of end would be fine with me. If I have to do it, and I don’t see any way out, this is what works for me.

Pain is an entirely other matter. I’ve had too much of that in my life and I don’t want to die under a heavy blanket of pain. Some pain would be alright, but nothing overwhelming. No pain would be the best, but that’s asking a lot of this aging, crumbling body to deliver. So, I’m willing to compromise and accept some pain when my dying time comes. I watched my mother as she lay dying in her nursing home bed almost two years ago now. She had Alzheimer’s and was unable to communicate at all verbally. She did communicate her pain, however. She was under high doses of morphine but we could tell when the morphine would wear off because she would get more and more agitated. I have no idea what she was experiencing, but I have the strong sense that it wasn’t at all pleasant. I was not there in her room when she actually took her last breath but as my sister recalls it, it was all fairly anti-climactic. Chances are very good that I won’t follow my mother’s example in death. For one thing, with myeloma I’m not likely to live long enough, and for another thing, I’ll probably still be sentient and able to make some decisions myself about my own death, unlike what happened to my mother. My mother was a very fine mother, cheeky as all get out sometimes and able to maintain a sense of humour before some pretty daunting odds at times. Dementia robbed her of end of life quality of life. That’s a shame. One of my sisters died a few years ago. She was four years older then me and had lung cancer. She was sentient for most of the time or her dying, but I wasn’t there when she finally gave up her last breath. I was a ferry ride away and unable to make it. She died a half hour before I got to the hospice centre where she ‘lived’. I know one thing for sure. She was pumped full of morphine for some time before she died and that effectively shut down her ability to decide anything.

Lately I’ve been experimenting a little with my pain meds. I’m on a large dose of hydromorphone (not related to morphine- a lot stronger, actually) taking two 1mg pills every four hours. I tried to back off some and take a lower dose every four hours for a day. I felt I could probably manage that because my pain was pretty much under control. Mistake! My pain is under control because I’m taking shitloads of hydromorphone. When I tried to back off, pain started to come back in my neck, ribs, right pelvic area, legs and shoulders. I knew that if I didn’t resume my twelve mg pill load a day that I would soon be completely incapacitated and bedridden. The decision was a no-brainer, but I was hoping for a better outcome.

One of the issues, of course, is that I haven’t really started treatments yet for multiple myeloma. I’ve been diagnosed and all that, but I haven’t had any chemotherapy to mitigate the effects of the disease, so it may be that in a few weeks or months and I go into remission that I’ll be able to back off my pain meds successfully. Wow, that would be cool. For now, I’ll continue ingesting lots of hydromorphone and maybe indulge in a beer or two, maybe even a tiny bit of scotch. It’s okay, all my specialists say a couple of beer are ok. I didn’t ask them about the scotch.

One (or more) of my readers here have suggested that I don’t swear anywhere near enough in my narrative. Well, fuck that! I’ll swear if I want to, swear if I want to, swear if I want to. You’d swear too, if it happened to you! (Figure out the song this is based on). Fuck!