A Sensation Reminiscent of Hunger.

Today is my med day. This morning between bites of granola I threw into my mouth about twenty pills from a shot glass. It turns out a shot glass is the perfect thing for taking a shit load of pills. Now I sit back in my chair, my computer on my lap. Carolyn is sitting on the love seat in the bay window across from me doing a word game thing on her iPad. Beyond her, out the window, I see the trees and shrubs in the front yard, still devoid of leaves, but showing budding signs of renewal.

Last night Carolyn and I watched a couple of episodes of the dark (ish) Star Trek Picard series on Netflix. One of the characters in the series is Rio, the captain on the starship-for-hire that Picard has engaged to fight the Romulans or whatever he’s up to. In the opening scene of the first episode last night Rio is seen reading a book. The book he’s reading, first published in 1920 is called The Tragic Sense of Life by Miguel de Unamuno, a Basque Spanish writer and university don who wrote with pride that he hardly ever left Spain.

I heard about this Picard episode and the book a few days ago and because Rio sums up the book by saying that the book is about dealing with existential angst in the face of death (or something like that) I bought a Kindle copy for less than two bucks but I could have read it for free on the internet archive (oh well). So, I’ve been reading this book and it’s confounding me, not because of its intellectual profundity, but because it’s so weird. Unamuno is dealing with his existential angst alright but his writing is bizarre to say the least. I’ll leave it for another blog post to deal with it and my own existential angst. Still, it’s relevant now because my body is changing so rapidly because of the onslaught of the chemo meds that I find it impossible not to think about it all the time, and to think about where this is all going. I’ve been sick for a long time, mostly because of the myeloma but for other reasons too. What my chemo meds are doing is exacerbating the problems I’ve had for some time, but with a new, perverse twist.

For the moment, I just want to say that I’m pissed, not with anyone or anything in particular, but just generally. Maybe it’s because my experience with the chemo meds doesn’t quite line up with my expectations based on what is in the documentation we receive with the chemo meds. When we start taking chemo meds, there is a very ritualistic thing that happens (rivalling ceremonial status) when we go to the hospital and are given lots of sheets of information on the meds. The information sheets are, in my estimation, designed to include as many warnings about side effects as possible without scaring people so badly they just refuse to take meds at all. That does happen.

The thing is that cancer is such an idiosyncratic set of two hundred or so diseases that one person may get diarrhea from the meds while another person may get constipation from the same meds. Invariably, the information sheets include all the usual suspects: diarrhea, constipation, peripheral neuropathy, hair loss, sterility (cyclophosphamide), headache, dry mouth, weight loss, and loss of appetite. A person may also get lower back pain, swelling of feet or lower legs, painful urination, anemia along with tiredness or weakness, shortness of breath and skin rash or itching. I’m getting most of these except the diarrhea and the lower extremity swelling. Another thing is that I haven’t had a normal feeling of hunger since I’ve been on the meds. Carolyn asks me if I’m hungry. I don’t know how to answer that question. It’s frustrating. This morning, though, I had a sensation reminiscent of hunger. Hence the title of this post. That was okay.

It would be nice to be told early on that you won’t have a normal poo or pee while on the meds and even for some time afterwards, that the itching isn’t just normal itching relieved by a bit of a scratch. No, the itching I’m experiencing is deep, almost impervious to scratching. My skin is changing. There was no warning about that. It’s getting coarser but no less oily. My back has been bugging me for decades. The chemo meds may be making the pain in that area worse, but I don’t know. My feet are always cold and I can hardly feel my soles. Again, that was happening before my diagnosis, so I don’t know if and what’s going on there, but I have my suspicions.

Thirty or more years ago, I was diagnosed with a B12 deficiency. B12 is critical for health and low counts of B12 in the blood can be deadly. I self-injected B12 for a long time then stopped because I didn’t think it was doing me any good. I felt no better injecting it. Then my count dropped to a very critical low. I started injecting again but it may be that the damage was already done. There is a connection between B12 deficiency, pernicious anemia, and multiple myeloma that we’ve been able to find in the scientific literature, but try to get anybody in the oncology community around here interested in that.* There’s no way. Our blood is highly complex as you might imagine so it should be logical to think that any compound that is crucial to our survival and is blood related would elicit curiosity and interest in the oncological and hematological communities. It may be that it is, but my experience is that B12 is not taken at all seriously by oncologists. It seems that oncologists have their well-worn, familiar roads to follow and deviating from those roads, that is, going off-road for a bit of a rip, does not seem to compute for them.** I’m thinking that based on my experience there just may be more to the B12/myeloma connection that first meets the eye and that it may be a fruitful area for more research. It’s probably not a coincidence that the symptoms of pernicious anemia and multiple myeloma are so similar, symptoms that I’ve been experiencing for decades.

  • *To be fair, I haven’t conducted a survey or anything of the sort. My observations come from casual conversations with medical staff.
  • **That’s definitely the message from Mukherjee’s book The Emperor of All Maladies.

Interesting Days

Bortozomib Blues

Well, it’s Monday morning around ten o’clock. The last four or five days have been really interesting. Last Thursday I went to the hospital for my weekly injection of bortozemib, the proteasome inhibitor that I take along with my chemo meds and dexamethasone. My bortozemib injections have always left a type of raised, red rash at the injection site on my belly. To try to alleviate the itching and swelling I took fifty mg of Benadryl to try to counteract the rash and swelling caused by the bortozemib. We also applied Benadryl cream to the injection site. The rash doesn’t hurt per se, but it’s super itchy and I feel like I need to reach down inside of the injection site to scratch my insides. It’s very annoying. Probably more important, though, is staying on this course of treatment. We had to stop a previous attempt at treatment with another chemo cocktail because the injections of the drug I was getting during that treatment were causing a huge rash, fiery red and raised, covering most of my midsection. This time I wanted to keep the rash under control so I could carry on with this chemo cocktail.

This past Thursday, the oncology nurses looked at the rash I was getting from my injections (which seemed to be getting worse week by week) and decided to bring in a doctor to see if there was anything we could do to mitigate it. After some consultation, they decided to inject the bortozemib into my right arm instead of my belly. Along with that strategy, they recommended taking more Benadryl. Well, I can say that the strategy was a success as far as the action at the injection site is concerned. There is way less irritation, rash, and swelling at the injection site in my arm than in my tummy. Today, five days after the injection, the irritation is minimal. However, now I had to deal with the effects of increased doses of Benadryl.

I didn’t think I could sleep that many hours straight. Last Friday I was more or less fine during the day and into the evening. We even went out for an hour or so late in the afternoon. Later, at around eight o’clock in the evening, I took fifty milligrams of Benadryl to try to really hit the rash before it got going. Well, that worked. Even though the dexamethasone usually keeps me awake all night, this night was different and I slept all night. In the morning I took some more Benadryl and was less than alert after that. In fact, I was pretty much stoned the whole day. Remember, I’m taking hydromorphone, a synthetic opioid, for pain already. Stacking Benadryl on top of that left me incapable of much of anything, especially clear thinking. Reading and writing were beyond me. Saturday night I went to bed around eight o’clock, fell asleep as soon as my head hit the pillow and stayed that way until seven-thirty on Sunday morning except for a couple of pee breaks. Even then, I was still semi-stoned. Sunday was a day of backing off the Benadryl! We found that the swelling and the rash around my injection site on my arm were not too bad. We applied some ice and that helped calm down the swelling too. Today, the itch is pretty much gone. I’m pretty happy about that.

So, the moral of the story seems to be that I have to get stoned to mitigate the swelling and rash that are caused by the bortozemib. Oh well, if that’s the price I have to pay, so be it.

Lab Work

Today was one of my regular lab days. I have standing requisitions at the lab every two weeks for one set of tests, once a month for another set, and once every three months for a set ordered by my kidney specialist. The techs are getting to know me at the lab in Cumberland. Today I gave up five vials of blood and a container of urine. Later today I’ll be able to access the results of some of the tests online via MyHealth. I’ll do that and carry on here then.

Okay, so it’s five o’clock and I checked my lab results. The few results that are in point to numbers back within reference ranges or in very positive, normalizing trends. Works for me.

Thursday will be another interesting day. We’ll be going to Campbell River Hospital to get my right femur x-rayed and for a consultation with the orthopaedic surgeon. I’m kind of worried about the excavations in my femur. I’m hoping the chemo and the zoledronic acid have done something to stabilize my bone marrow over the past couple of months. We’ll know more next week.

The Unrelenting Presence.

Carolyn and I have just finished reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. The author, an oncologist and Renaissance man, who won a Pulitzer Prize for non-fiction for this work in 2011, masterfully addresses the war on cancer over the past few centuries or so, but with a special focus on more recent events and ‘successes’ relating to specific cancers and new treatments. Cancer, as the books so often argue, is not one disease but lots of different diseases. They all have one thing in common, though: pathological mitosis.

I’m not going to review the book today. I will, though, sometime soon. I’m kind of bummed out right now and not really in the mood to write a long blog post. I took my chemo meds again today. That’s always a fun time, but I’m still confused about just what accounts for how I’m feeling. Sometimes we call these feelings ‘symptoms’ but I don’t like that word much. I’m not sure why. For instance, this afternoon I felt exhausted, and lightheaded, somewhat dizzy too so I went to bed for a nap. As I lay there my body was tingling all over. Is that a feeling or a symptom? If it’s a symptom, is it a symptom of my myeloma, the chemo meds or something else? It’s still tingly, but not as intensively as this afternoon.

I’m bummed, but I should be celebrating, I guess. I had a five minute telehealth conference with my Victoria-based oncologist yesterday morning that’s left me feeling a little empty. For one thing, although he called me by name when we made screen connection (It’s like Skype on steroids), he was not prepared in the slightest for the interview. He asked me how I was doing on a chemo cocktail he had withdrawn me from a few weeks ago. Then he asked me what he could do for me. Well, shit. He then got so focussed on the computer screen he was looking at with my charts all over it that I might as well have not been there. So, I asked him about my lab results. Yes, he said, everything is going very well. The drugs are working. Reason to celebrate, right? Yes, I suppose, but then he says that I had better get used to the shitty quality of life I have because that’s my future. Even if I go into remission. Well, slap me in the back of the head! It wasn’t that long ago that he sat before me and told me I’d regain some good quality of life in remission. Maybe he was having a bad day. Now I was having a bad day too. I felt that this guy needs a talking to about compassion. He rebuffed any attempt I made at personal conversation. He was cold and completely detached. Maybe he was having a bad day but maybe not. Maybe he’s like this most of the time. Then I thought, maybe my expectations are too high. Maybe I should think of him as a consultant, more than as a doctor treating me like my GP would. After all, I see him for five minutes every four months. So, whatever, I’m still bummed out. Distractions like writing, reading, and watching YouTube videos are good for me, but I can’t be distracted a hundred percent of the time. Any break, any crack in my distractions and the dark light of myeloma reminds me in no uncertain terms of my mortality.

Mukherjee is so informative. I learned a lot reading his book. I’m also reading a book on Medieval medicine and even a thousand years ago, ‘doctors’ recognized cancer for the killer that it is, but they looked for the causes in ‘black bile’ and other humours gone bad. Towards the end of his book Mukherjee gets real for me. It’s all fine and dandy to ‘know’ about cancer, to study it, to follow developments in its treatment, but now, cancer has me up close with its unrelenting presence. I leave you with two quotations from Mukherjee’s book. I am these quotations.

“The poet Jason Shinder wrote, “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

AND…

“Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

Read the book

Enough for now. Maybe I’ll have more gumption tomorrow.

Welcome to CancerLand* AND Happy Birthday to me!

Well, another festive season is in the books. This one was no different than many in the past with family, food, and drink (in moderation, of course) along with the requisite tree and lights. This year, however, the family arrived on the weekend prior to Christmas and stayed much longer than usual. That’s because our daughters, their husbands and children (one of our daughters carries the full responsibility for the production of our three grandchildren) wanted to stick around to spend some time with us. I love that they wanted to be with their sick old dad. They are such a delight to have around and I was very sad to see them go back home to Vancouver.

Wow, has my life ever changed over the past few months. I was diagnosed with multiple myeloma in early October, 2019, and since then I’ve been brought slowly yet inexorably into CancerLand. There’s no doubt that I had multiple myeloma long before the official diagnosis. The symptoms were clear in hindsight. It’s probably been well over five years. But it’s been only since November, really, that I’ve gotten my passport to CancerLand. I’m fully a resident now, brought into the institutional fold. That means frequent visits to the lab and to the hospital with calls to oncology nurses interspersed. I mean, I have a diagnosis! I’m legit! I have my badge and my pass to the ER.ª  I’m not just another whiny patient going to see my doctor to complain about being tired. I’m a CANCER PATIENT!

Speaking of being a cancer patient, I’ve now completed my first course of chemotherapy. It lasted about a month. My stomach is bruised from subcutaneous injections of bortozemib and my brain is bruised by weekly oral doses of cyclophosphamide and dexamethasone as well as zoledronic acid infusions once a month. I’m subject to a true cocktail of poison. Oh well. I used to drink more scotch than was probably good for me on occasion and people sometimes refer to alcohol as poison so, there ya go. Poison for poison.

Now we wait. We wait for the results of lab tests on Monday and what the oncologist will tell us on Wednesday based on those results. Will I be continuing with this same cocktail? Are the numbers going in the right direction? Can I realistically expect remission in the next few months? What? What? What?

Tomorrow is my seventy-third birthday. That means I start working on my seventy-fourth year tomorrow. For a guy who thought at twenty years old that he’d never live to be twenty-six, I’ve done pretty well. I can’t complain about my life. I must say, though, that there are a few things I might do differently if I had to do them over again, but I don’t dwell on those things anymore. I don’t have time. I didn’t have time when I was twenty-six either, but I didn’t know that back then. Time has passed so quickly, it’s frightening. If I had been able to really understand when I was twenty years old how in the blink of an eye I would be seventy-three I might have taken some things more seriously and dismissed other things as unimportant. But that’s the way it goes. There may be some twenty year olds out there who understand how fleeting life is, but I haven’t met them. Trying to convince them of that fact is not going to be very fruitful so meh…

I haven’t put together a New Year’s resolution. Should I? Maybe I can resolve to stay alive this year. Is that good enough? I’ve realized that in my state of being, committing to a long-term project to save the world is probably overly optimistic, but a resolution to stay alive in 2020 is reasonable, I think. I just might be able to see it through too. Wish me luck!

_________________________________________________________________

*”Welcome to Cancerland.” (from “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich). The title of this post is taken from this book. Ehrenreich uses this title as an introduction to the way she became medicalized after having been diagnosed with breast cancer. Start reading it for free: http://a.co/3h6SgyT

ª I do have a pass to the ER. I have a letter of introduction to the ER staff from the BC Cancer Centre telling them that if I show up to the ER they have a number of tests to do stat! If my temperature goes over 38˚ C, I need to get myself to the hospital ER for a possible antibiotic infusion. An elevated temperature indicates an infection of some kind, something I don’t need right now.

Now we wait.

I started the second course of chemotherapy using the new cocktail of drugs called CyBorD: cyclophosphamide, bortezomib and dexamethasone. Ya just got to be impressed by that line-up of fancy Latin names for that nasty little prickly army of toxic chemicals that we have to wear gloves to handle and that I gleefully (albeit not without some trepidation) ingest every week. Next week they’ll also infuse me with zoledronic acid, a drug that is supposed to strengthen bones. So far, so good. I may have said this before, but I will reiterate that the staff at the Cancer Centre at the hospital here in the Comox Valley is really fine. I feel that I’m being looked after. I have a person I can reach on the phone if I have any issues or questions and they’ve given me a letter to take to the Emergency Department if for any reason I should need to go there.

We won’t know for a while yet what effects the chemo drugs are having on my myeloma. It’s a waiting game, but I suppose the whole process is pretty much of a waiting game. There are so many questions and very few answers at the moment. In my last post I told you that I was going to see an orthopaedic surgeon in Campbell River. Well, we drove up to CR on Monday (the 9th) to his clinic in Willow Point. His name is Dr. Deke Botsford and he is a specialist in hip and joint replacement surgery, but he’s also capable of dealing with the issue I have which is the lesions in my femurs. To be precise, the lesions are in what’s called the distal part of the femur which is the part of the femur closest to the knee. He told us that that was an unusual site for myeloma lytic lesions to form but he also said that there were treatment possibilities. So, the lytic lesions are the result of paraproteins in my blood excavating my bone marrow thereby weakening my bone and getting in the way of the creation of hemoglobin. The excavations are called lesions. It may be that the chemotherapy treatments I’m on will arrest the growth of these lesions but then again maybe not. Botsford could drive a rod up my femur from my knee all the way to my hip joint so as to stabilize the bone and keep pain at bay. Or, he figured I might benefit from radiation therapy. I expect my oncologist will want to wait for a while to see what the chemotherapy treatments are doing before launching into another therapy. I see Botsford again in early February at the hospital in Campbell River to get an x-ray of my right femur and to assess the state of affairs in my bones. It seems that my right leg especially is weakened by the paraprotein excavations, but it is not likely to spontaneously break. It could break if I fell, for instance, or banged it a little too hard on a door jamb or something. I’ll try hard to see that doesn’t happen.

As far as pain goes, I’m dealing with it. I’ve reduced my intake of hydromorphone, my main opioid line of defence, but things seem stable enough. The zoledronic acid has a nasty side effect in that it can create elevated levels of pain in the back so I won’t be trying to wean myself off of hydromorphone anytime soon. Besides, if I do back off a bit with the hydromorphone, something I’ve tried a couple of times, I can feel pain creeping back into my ribs and back so I don’t think I want that to happen.

I have been going out a lot, of course, to the lab, the hospital and to doctors’ offices, but late yesterday afternoon Carolyn and I went to the Cumberland Brewing Company to meet with some friends. That’s the first social outing I’ve been on in three months or so. It was taxing, and today I’m exhausted, but it was also good to get out amongst friends and sip on a bitter. Even though I’m very tired I still managed a visit from a good friend and former student now living in Nanaimo. We drank tea out of mugs she made and delivered to us three weeks ago. Everyone has been so kind and generous. Gifts of food and goodies keep coming. I really feel the love.

It is all so surreal.

From the time in late September until now, we’ve been living a life tainted with the surreal. At any time I expect Salvador Dali to peak around the corner of the hallway into the living room dangling a fluid clock from his arm peering at me silently from his secure death. I can’t seem to find a solid bit of ground, a place where I don’t have to feel the ethereal presence of the spectre of ‘incurable cancer’. Everywhere I turn all I see is wall with no door inviting me into the light beyond the uncompromising diagnosis of a life sentence with no chance of parole. Some people will argue that there is always a door, one just has to believe in it for it to appear and open. Imaginary doors like that don’t exist in any prison I’ve ever visited so I am left with the only tangible evidence I have and that’s based in the physics of concrete and rebar, and not in my imagination, which I confess, I thoroughly enjoy as a garden of pleasure and delight but which flickers inexorably out of existence like a holodeck program on Star Trek.

It wasn’t supposed to be this way.

We were supposed to retire in 2012 and do a lot of the things we had no time to do while we worked at our jobs. We could go camping in the off season and not during the busy summer season. We were supposed to go on long walks and go out for coffee when it struck our fancy. We could travel if we wanted to. We could get more involved in our community. Well, we did a lot of these things and more. But slowly, over the years, I lost energy. I could no longer accompany Carolyn on long walks. I could still putter around the house and fart around in my shop, but as time passed, puttering became more and more difficult, and then impossible. I knew that there was something wrong. I knew it for a long time. We tried to figure out what was wrong, but we came up empty handed time and time again.

Over the past few months, I became increasingly immobilized. I was short of breath after walking up the driveway. I was in so much pain that I was loathe to move. Then, in utter desperation, we went to see my GP. He ran some tests and from there it was just a matter of time before we got the definitive diagnosis of multiple myeloma. I was gobsmacked! It wasn’t supposed to go this way. But I’ve already written about this in past blog posts. What I have not written about is my new reality, as rapidly changeable as it is.

Most days now, I don’t do a hell of a lot of anything. I spend half the day in bed and the better part of the rest of the day in my recliner. Well, that’s mostly true, but not entirely. It’s strange, but it’s like I have a job again. Weekends are mostly free, but weekdays are taken up with visits to the lab, doctor’s offices, and hospital. For example, this week I have an appointment today with an orthopaedic surgeon in Campbell River at 1 PM to deal with the lytic lesions (tumours) in the long bones of my legs and the degenerative disk disease in my neck. Tomorrow I see the dentist at 2 PM because one of the very rare side effects of one of the chemo drugs I’m taking is a degenerative jaw thing. On Thursday I do the chemo routine again with pills in the morning and a visit to the Cancer Centre at the hospital for my injection and visit with the nurses. I have to check my calendar for next week, but I know that I have an MRI on the 19th.

I expect this will change as my treatments progress, but it will still be that my treatments, office visits, etcetera will be during the week and I’ll have weekends ‘off’. I should have fewer appointments with my GP and even with the chemo crew. Lab visits will still happen frequently so they can monitor what’s happening with my blood. Things will get very routine if all goes well. What we’re aiming for is remission within a few months.

Don’t get me wrong, remission is clearly an important goal. If I get full remission for three or four years that would be amazing. Still, it’s hard to free my mind of the verdict I know will not change. The multiple myeloma may not kill me, but it sure brought to the forefront the reality of my death. I’m almost seventy-three years old. I’ve had a very good life for the most part but I want more.

Today is not a good day.

Yesterday was okay. The day before was fine, but it’s hard to predict from day to day what my day will be like when I wake up in the morning. When I woke up this morning I knew that I wouldn’t be having a good day and contemplated just staying in bed. I try to maintain a modicum of a schedule so I like to get up around the same time every day although over the past couple of weeks my rising time has shifted a bit to the 8 AM side and is less inclined to stick to my former rigid 7:30 AM time.

I know my day won’t be a good one if I wake up from an unsound sleep with my body in full tingle mode, especially if it’s accompanied by the sensation of spiders crawling all over my legs. My reaction to my first cursory assessment of the state of my body is to hunker down, pull the covers over my head, and forget about it. But I don’t do that, do I. No, I get up, stagger into the bathroom clutching my cane in the hope that it will help me maintain my balance, and get myself into the living room where I usually plunk myself down into my recliner. I know I will spend the day in utter exhaustion reluctant to even get up to pee.

This pattern of not knowing until I wake up what my day will be like has been going on for years. That’s nothing new. I have no idea what differences in my daily routines will be wrought by the new chemical soup I will be ingesting in various ways as the oncologists stir up a new chemotherapy routine for me next week. The chemotherapy is bound to throw things out of whack in lots of ways some I can prepare for, some I can’t do anything about. Over the years, I’ve almost gotten used to being restricted in my mobility, but in fairly predictable ways. If I wanted to do something, like attend a meeting or go to a concert, I would know that if I did that I’d pay for two or three days after with exhaustion and pain. It was unthinkable to contemplate attending an event two days in a row or doing simple jobs around the property after a previous day of activity. My life has become less and less social over the years.

Truth be told, I’m a little depressed. The time between chemotherapy treatments has given me time to think, and thinking often gets me into trouble. So, I did an evaluation of my life to date going over high and low points, achievements and regrets. Probably a mistake, but one I’ve frequently made so I’m familiar with it. I even looked at pictures of myself over the years, from the time I was around two years old to quite recently. I thought about the different stages of my life, my time at home with my family, my time away to boarding school in Edmonton, my crazy teen years, working with my father, college, university, marriage, teaching, volunteer work, art, woodwork, etcetera. Then on top of that I overlaid health issues that I’ve experienced. I don’t need to go over all of my health problems here, but I had a few broken bones along with the discovery in the early 90s that I was vitamin B12 deficient and that I would need to inject B12 into my leg every month or so for the rest of my life. The discovery of my B12 deficiency was made when I complained to my doctor about fatigue, brain fog, dizziness, and that sort of thing. In 2002 I had my left kidney removed because I had renal cell cancer. Later I had an appendectomy. Still, I complained of fatigue, brain fog, dizziness and vertigo. There is a high incidence of Multiple sclerosis in my family so we chased that for a while but found nothing. Recently I was diagnosed with multiple myeloma which makes sense of all the other symptoms I’ve been having. I’ve probably had ‘smouldering’ multiple myeloma for years. So, now, I come to this:

I’m 73 years old (very close to it). I have bone marrow cancer, one kidney, B12 deficiency, degenerative disk disease (in my neck), arthritis, and who knows what else ails me. I’m old enough to die as Barbara Eirenreich argues and I’m okay with that, but the suspense is killing me. I’m being told that I could live quite a few more years with a few good ones thrown in there too. Still, I have incurable cancer and old age is coming after me. I’m beginning to envy people who die of sudden heart attacks or massive strokes. They have no time to think about all the things there is to think about.

I’ve discussed this with a friend of mine who also has multiple myeloma and his idea is that he doesn’t focus on his disease at all, or on his age, or any other potential killer. No, he focusses on what needs to be done: the shed needs a new roof, the canoe needs a new skin, baseboards need to be installed, grandkids need hugs. Dying will take care of itself when there is no other option, when it goes to the top of the priority list and refuses to be ignored any longer. I find myself thinking the same way. Yes, I get a little depressed when the extent of the threats to my life are displayed in front of me, but I get over it pretty quickly.

And I think about life and death. They aren’t opposites as we generally think of them. They cannot exist without each other. My life, like the lives of the nine generations of my ancestors who have lived in Canada are blips or interludes in the continuity of time and space. Mushrooms are a good analogue for us, I think. They push up through the ground cover from the mycelium below, flowering for a bit then melting back into the biomass to contribute again to the mass of life on this planet. Of course, for most of us in the course of history, thinking of ourselves and our species primarily as biological phenomena hasn’t been enough. The fact that we are temporary agglomerations of matter is not terribly satisfying for us and our big brains. We’ve loathed death and we deny it in every way we can, individually and socially. I try to face death as I face life. I try to put my life, my history, the phases of my body’s growth and decay in the broadest context I can. I don’t care to give them more importance than they are entitled to in the context of life on this planet.

My post on the social inequality in Emergency Departments is coming but my next one is about our immune system, the traitor that it is.

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!

Tread lightly, you could break a bone!

I told you in my last post that I had gotten a skeletal CT scan a week ago Saturday, November 9th. I know what these scans are looking for and I was somewhat apprehensive about getting the results. I still haven’t heard from my oncologist about the scan and I won’t be talking to him about it until Wednesday, the 20th. However, my GP called me on Friday the 15th at 5:30 PM to talk to me. Truth is, whenever my GP calls at 5:30 on a Friday evening it’s never good news.

The first question he asks me is if I’d heard anything about the scan. I said no, nothing. He then proceeds to tell me that I have a four centimetre tumour (lesion) in my right femur. Now, that’s a fairly large lesion but it’s in a fairly large bone too. Still, one of the main problems with multiple myeloma is bone lesions. Patients can have several bone lesions simultaneously making their lives somewhat precarious. Any wrong move can lead to broken bones and immobility.

My GP is rightly concerned about this femoral lesion and tells me that I may need a full length splint to keep my leg immobilized but it’s Friday evening now and I’m in no shape to even consider getting one, especially if it means going to the ER. That’s not going to happen. Not in a hundred years!

After a time my GP and I settle on a plan to keep me more or less immobilized, at least until Monday. Carolyn and I get back to our dinner. A while later my GP calls again after having consulted with an orthopaedic surgeon. The surgeon tells him that I will probably need radiation on that tumour and that radiation treatments happen in Victoria. Until then, I need to keep my right leg as immobile as possible. We’re getting a wheelchair on Tuesday. That will help, and on Wednesday I talk to my oncologist about where we go from here in terms of chemotherapy and now radiation treatments.

You know what? I want some straight answers. That’s all. I know that straight answers are not as easy to come by as they should be, but I’d like a clear, unadulterated assessment of my prognosis at the moment, if you don’t mind. So far, my oncologist and I had not even discussed bone lesions and the treatments for them, and we assumed that the lenalidomide/dexamorphosone chemotherapy drug combination would work and that we would reassess in a year or so.

Yes, I understand that multiple myeloma is highly treatable although it’s incurable, but every myeloma patient presents with an idiopathic set of conditions making blanket prognostications about remissions and potential lifespans kind of useless, if not overly optimistic. So far I have no idea how bad a case of myeloma I presented with and my oncologist is not really interested in what stage I’m at. He says he’s much more interested in how a patient responds to treatments than where they might be on a staging continuum. That’s fine. I hope that sometime soon we will actually be able to assess just how I’m doing on a new course of chemotherapy drugs and that we will be able to conclude that what I’ve experienced so far is a temporary glitch in my treatment.

Whatever. I like taking road trips on winding roads in unfamiliar territory, but a nice stretch of open highway now and again can be exhilarating too. I’d like to see some open road for a change where obstacles can be seen a long way off and I can put the petal to the metal. Is that too much to ask for?

About pain, cold sweats, hallucinations, delayed chemotherapy, rashes and, other fun stuff.

[A note: I’m used to writing posts here of approximately a thousand words. Because I’m so fatigued with anemia and other conditions that affect my concentration, for the foreseeable future I’ll make my blog posts a little shorter. That way I will be able to continue writing and not tire myself out too much.]

I started the chemotherapy drugs, lenalidomide and dexamethasone last Thursday morning. I was to take one lenalidomide tablet and five dexamethasone, continue with the lenalidomide for three more weeks and five dexamethasone tablets every Thursday morning until they were done. Frankly, it was a relief to finally get going on a treatment for my multiple myeloma (MM), any treatment. Well, you know what they say about the best laid plans of mice and me. They never go according to plan, and this was not about to become an exception to the rule.

It must have been Saturday (I got a CT scan that day) when I noticed that my butt was getting really itchy. Well, naturally, I scratched it. I knew it isn’t a good thing to scratch an itch, but I just couldn’t help myself. The welts just got bigger and hotter and covered my whole midsection. I developed a slight fever. Carolyn, my very competent care aide spread some lotion on my backside and up under my armpits to relieve some of the itching. Damn good thing too because I was close to losing it.

Well, it turns out that the reason I developed this rash in the first place is that I happen to be allergic to my main chemotherapy drug, lenalidomide. Now, that’s not cool! Lenalidomide is an oral therapy drug, and for that reason is very convenient to take. So, it’s the weekend, I’m itchy as hell, but I persist in taking my chemo meds. On Tuesday, yesterday, I call the oncology nurse in Victoria who seemed quite concerned about the rash. She tells me that she would try to track down my oncologist to get some idea of what to do. My regular oncologist was out of the Cancer Centre at meetings but she tracked down his colleague who told the nurse to tell me to cease taking lenolidomide immediately. So, great. Here I am, not a week into taking my first course of chemo meds and now I can’t take them anymore! What the hell is that all about, universe?

I was pretty bummed out for a time there, but then I realized that this is not an uncommon turn of events in oncology. In fact, about 40% of people enrolled in the lenalidomide/dexamethasone regimen turn out not to be able to tolerate the drugs.

A Cancer Clinic receptionist called this morning to set up a telephone consultation with my oncologist for the 20th, next Wednesday. At that time I should learn more about my next course of treatment as well as what they learned from my last CT scan. Strangely enough, I also got a call from the hospital here in Courtenay telling my that I needed to call them and set up a second course of treatment. She mentioned lenalidomide and I said it’s unlikely that it would be for lenalidomide because in all likelihood, I’m allergic to it and I was told to stop taking it. I guess it takes a while for messages to get from Victoria to Courtenay and back. I soon learned to take all phone calls from the hospital or the Cancer Clinic with a grain of salt and usually wait for confirmation from a third source before moving on with anything.

In my next post I’ll address the fun topics of pain, hallucinations, and cold sweats.

I was going to write a post about the social triage that happens in emergency departments everywhere, and I will get around to that, but for now I have other more pressing issues to deal with. I’m intent on documenting my experiences with myeloma as completely as possible so, for the moment, that will be my priority for this blog. One strange thing that’s happened to me is that I have a recurring dream about the emergency department at the Royal Jubilee Hospital. More on that to come.