#myeloma

36 Me, my Body and I: Part 2

~ Roger JG Albert ~ 9 Comments

To begin I want to dwell for a minute on Sigmund Freud’s ideas about the human personality. It’s a secular formulation, not surprising as Freud was an atheist. I’ll get to more religious formulations in a bit but Freud shows how personality can be conceived as being made up of three ‘parts’: the id, or libido (sexual energy), the ego, and the superego. The ego, in this scheme of things as I understand it, is the part of the personality where the needs of the id and the superego are negotiated and worked out. The superego is that manifestation of the human personality that accounts for social norms, values and morality. The fact is that the id, ego, and superego are not really ‘parts’ of the human personality, but manifestations of the various and often contradictory needs inherent in the id and superego. In other words, they are not things and can only really be identified by what they do or manifest.

For example, the id of a young man (I can attest from personal experience) may be consumed, or at least, pre-occupied with thoughts of sex, sex and more sex. The superego, on the other hand says, wait up there cowboy, you can’t have sex with anyone or anything at any time. There are social rules around these things. Listen up! NO sex with your sisters, brothers, or your mother, nor with sheep, goats, or monkeys! You hear? The id counters by arguing: well, what am I supposed to do with all this energy? You tell me I’m not even allowed to masturbate! That’s not fair! In these ‘debates’ sometimes the id wins, more often the superego does. There are people who have no social conscience or social ‘brakes’ to their behaviour. We call them psychopaths or sociopaths. People with rampant, out-of-control ids can be very dangerous as sexual predators and can be uncontrollably violent. Freud’s scheme has to be considered along with other aspects of what it means to be human such as bodily integrity, intelligence, and upbringing. Personality is very idiosyncratic if you haven’t noticed. It’s all very complex but it’s what accounts for our individuality.

What Freud’s personality scheme does for my purposes here is to highlight the fact that we can easily conceive of our personalities made up of semi-independent parts. This idea is integrally important to the religious, spiritually-minded, and Christian (certainly) notion that we are made up of body, consciousness, and soul, different aspects of us that are related but have a life of their own, so to speak. To think of the soul as immortal, it’s critical to separate it from the body which dies although some religionists, especially Darbyists* (who would probably find the 1991 film Rapture right up their alley), would prefer to go to heaven with their bodies intact. Rapture (the film) depicts end-of-time second coming of Jesus and the ascension of the human body and soul to heaven. Some religionists are very keen to see their physical bodies live eternally but they’ll settle for their consciousness or soul carrying on after their bodies die.

This is the position of Miguel de Unamuno, the Spanish Basque scholar who was for a long time the don of Salamanca University in Bilbao. I introduced you to Unamuno in one of my recent posts. I refer to Unamuno here because he is such a keen advocate for the immortality of the soul. He published The Tragic Sense of Life in 1920. It’s a rambling poetic rant and an impassioned plea to realize the limitations of reason in coming to grips with the most important problem he reckons facing us all and that is the immortality of our souls. For Unamuno, the longing for the immortality of our souls is what makes us human. He writes:

“That is to say that you, I, and Spinoza wish never to die and that this longing of ours never to die is our actual essence. Nevertheless, this poor Portuguese Jew, exiled in the mists of Holland, could never attain to believing in his own personal immortality, and all his philosophy was but a consolation which he contrived for his lack of faith. Just as other men have a pain in hand or foot, heart-ache or head-ache, so he had God-ache. Unhappy man! And unhappy fellow-men!” (from “The Tragic Sense of Life” by Miguel de Unamuno, Kindle Edition, page 43)

According to Unamuno, except for a few minor and aberrant individuals and groups, humans have throughout history consistently believed in the immortality of the soul. That commitment and longing for immortality that is at the very core of our beings and is effectively an instinct of perseverance as Unamuno sees it is our membership card in humanity. If we don’t believe or if we insist on finding a logical, reasonable explanation for the immortality of the soul then we are evil, wicked people who refuse to be a part of the human community. Unamuno can surely be called a hero in the social imperative of death denial. He finds atheists and non-believers of all sorts abhorrent. “If consciousness is, as some inhuman thinker has said, nothing more than a flash of light between two eternities of darkness, then there is nothing more execrable than existence” writes Unamuno. Life, for Unamuno is absolutely meaningless if the immortality of the soul is not the prime human fact and goal. Unamuno is very keen to separate reason from life. He says reason cannot prove one’s immortality, only life can, and it’s a question of faith. The soul has primacy in Unamuno’s scheme of things and is his ticket to immortality. Interestingly, he’s not as concerned with the existence of God as he is in his own immortality.

A more contemporary aficionado of the immortality of the soul is Ram Dass who just died recently. He believes that the soul must exist and it must be immortal because otherwise our earthly lives are meaningless. He writes:

“To be here for fifty to eighty years only to be annihilated at the end just doesn’t make sense. Nothing else in the universe is that inefficient. We have to be here to learn; otherwise our difficulties are truly meaningless. For the Ego, the roles we grow into and the positions we hold at the pinnacle of aging are the culmination of life. For the Soul, learning is the culmination. When we expand our self-image to include the Soul, we notice a marked shift in our personal consciousness, a liberation from the small egotistical self into a far more spacious context. From this Soul level, we are able to view our Egos from the outside in. This allows us to observe our minds and bodies in ways that will seem new and surprising, as if the trapdoors of the “self” have been opened and we can finally step outside, enjoy the view, and put a welcome distance between who we are (from Soul’s perspective) and the suffering we experience at the level of body and mind. Thus, with practice, we cultivate the tremendous healing of knowing ourselves as spiritual beings, too.” (from “Still Here: Embracing Aging, Changing, and Dying” by Ram Dass, page 28)

Well, I see a lot of problems with Dass’ non-sequiturs to start off . Why doesn’t it make sense that we are annihilated at the end of lives? And ‘nothing else in the universe is this inefficient’? What kind of silliness is this? Efficiency as a criterion for the immortality of the soul is ridiculous. Dass would be much better off just borrowing arguments from Unamuno than putting forward illogical ‘reasons’ for the immortality of the soul. Furthermore, he argues that we can see ourselves from “this Soul level”. Magical thinking indeed! But Dass appeals to a large audience of people intent on believing that when they die, they don’t really die because their souls carry on into eternity. I can seriously say that I’ve explored the implications of this idea through years of study, introspection and meditation, including, like Dass, the use of hallucinogens. Frankly, I just don’t see the point in adding a fictitious construction called the soul to our personalities. In a way (and I’m sure I’ll get up some people’s noses for saying this) it strikes me that believing in the immortality of consciousness or the ‘soul’ requires a great deal of collective narcissism and chutzpah. Where do we get off thinking we’re so special under the sun that we get to live eternally and no other life forms do? Note that I write ‘collective’ narcissism. As individuals we have no reference other than social ones to decide what to believe. We can be the humblest of individuals yet still be trapped in the overarching cultural imperative for apotheosis via immortality.

Of course I DO argue that in a sense we DO live eternally, just not in our current human configuration or through the ‘soul’. I know that I’m now a long way from discussing myeloma and my daily grind under its treatments. That is so. However, it’s important for me, as I approach my inevitable death whether it happens in six months or ten years, to clarify my point of view. There’s a certain amount of catharsis going on here, no doubt. Most people want to live forever. Not me. I’m perfectly happy to see my consciousness evaporate when my heart stops and at that point all the atoms and molecules that made up my body will be free to go. Have fun, little buddies!

In the third post in this series coming up shortly, I reflect on the works of Emile Durkheim and Ernest Becker. Both worked as social scientists. Durkheim died in 1917, Becker in 1974. Both had a lot to say about the soul and the sacredness of society as a source of the personal sense of immortality. Both have played a large part in my intellectual life but Becker sticks with me much more viscerally than the cerebral Durkheim. Both argue in their own way that the power of religion lies in society.

Stay tuned.

_____________________________________________________________

* “Though Darby may have burned his bridges, his message gained a larger and larger following. Today his dispensational premillennialism is the view of many modern fundamentalists and conservative evangelicals.” From: https://www.christianitytoday.com/history/people/pastorsandpreachers/john-nelson-darby.html

35 Me, my Body and I: Part 1

~ Roger JG Albert ~ 4 Comments

I’m quite attached to my body. Frankly, it is a long way from perfect, but I’ve grown fond of it over the years and have become increasingly tolerant of its idyosyncracies and foibles. It’s served me well in lots of ways. One special way it’s done so is by helping to create my two daughters thus ensuring genetic continuity for me and Carolyn. It can’t take a lot of credit for that, Carolyn having done most of the heavy lifting, but still, there were moments of joyful participation in the magical process by which my daughters were conceived and born.

Now, however, my body has decided that it’s getting time to move on. It seems to be quite relentless in this idea. My body has an intelligence of its own, as does all life on the planet. It’s not going to sit still. Life is about change. I’ve pretty much come to grips with dying. I understand it intellectually and am now in the throes of living it. Death is an ultimate form of disengagement from the world for me (I), but in another sense it’s just another form of re-engagement for all the atoms and molecules that make up the complexity of the structures in my body.

For me, as I’ve noted before, we are the stuff of stars. Translating that into language closer to home, it means that the material that makes up my body and all life on the planet has always existed and will always exist as long as the universe is around to sustain it. According to Brian Cox, the universe itself is finite so all bets are off as to what happens to matter and energy in billions of years when the universe itself is worn out and darkly still. For the moment, however, we can say that the universe is the ultimate driver of life on earth and anywhere else it might exist in the cosmos. “Life” here needs to be conceived in very broad terms and not just related to biological organisms. Galaxies can be said to have a life span, mountain ranges and continents too. Nothing is forever. Nothing.

There are two aspects of myself that are of interest to me for this discussion: what happens to my body after death and what happens to my consciousness. These are no longer arid philosophical considerations, they have never been closer to home in a real visceral sense for me, and are mobilizing all of my intelligence and emotional energy.

Without sounding too arrogant, I think I have both of those pretty much figured out after fifty years of study, thought and introspection. As far as my body goes, it’s quite simple, really. I’m a big proponent of simplicity in the search for solutions to life’s problems. That means that I adhere to the philosophical principle called Occam’s razor, or the idea (without being too simplistic) that the simplest solution to a problem is probably the best.

“Antoine Lavoisier described the law of conservation of mass (or the principle of mass/matter conservation) as a fundamental principle of physics in 1789.” That formulation was followed later by the law of the conservation of energy and later still, after Einstein, by the law of the equivalence of mass and energy or the idea that mass can be transformed into energy and vice-versa, but neither can be lost in the process. Bringing this idea down to my level, it is my sense that what makes up my body has always existed and always will, giving me a real sense of connection with all life on the planet and a very real sense of continuity with all life, past and present, including with my ancestors. Put simply, when I die, my body and all of its constituent elements return to the pool of raw materials available for the construction of new forms of life, as I’ve noted before. I can’t emphasize enough the notion of continuity here. In the face of my immanent annihilation, I take solace in the notion of my intimate connection with life in the cosmos and as part of an ongoing process of life. That still leaves me with a problem. What about my consciousness?

I think that my consciousness, when my heart stops beating, will no longer exist in any way, shape or form. Why should it? My consciousness is organically tied to my body and cannot exist without that living connection. Break that connection and the light goes out. So, in anticipation of my death, I may mourn the loss of consciousness above all. That doesn’t mean that I think it has any means or justification for existence beyond the demise of my body. Remember Occam’s Razor. I see no need at all for any supernatural intervention in all of this, something I think is unnecessary given the perfectly plausible and simple scientific explanations available to explain life and its continuity. It seems I’m probably in a minority on this one.

Now, if I were to write a play based on what I’m going through at the moment, I would surely incorporate as a basic plot line the plethora of imaginative constructions (ideologies) that argue that consciousness does not die with the body, but has a life of its own and goes on ‘living’ after the heart stops and all brain activity ceases. I’d have to put my own ideas of continuity up against the age old ideas of the perpetuation of consciousness beyond bodily death. I can envision a Waiting for Godot or My Dinner with Andre type of play. Frankly, I’m perfectly content with the idea that my consciousness will not outlive my body. It’s the simplest and most elegant solution in my mind although it has some serious social implications that I need to explore next. However, in the play I envision, proponents of the immortality of consciousness and/or the soul would need to have their say.

It’s not a huge stretch to go from the perpetuation of consciousness after death to the idea of the soul and its existence independent yet connected to the body and its survival post-death. The ethnographic literature is full of descriptions from ancient cultures about the role of the soul in human life and its immortality. Sociology addresses modern versions of this idea. It seems that for millennia, humans have been loathe to entertain the possibility of total and absolute death and have been, across the board, wedded to the idea of the immortality of the soul even more than they have espoused the existence of God or any other supernatural force. Thousands of religions and their associated churches or societies have come up with often contradictory ideas related to the makeup and activities of the soul and its place in the universe. These contradictions have often been the source of violent confrontations and pogroms, because if my idea of how to get to heaven is the right one, yours has to be wrong and I’ll kill you to show how much more powerful my conception is to yours. These are ideas I need to explore in part 2 of this post.

Stay tuned for part 2 which I’ll release on Sunday, March 8th.

34 To live and to die.

~ Roger JG Albert

Yesterday we went to the lab for the nth time so that the tech might gather some of my mucky blood for analysis. My last trip to the lab was fine, but the results were incomplete. Apparently there was a problem with one of the samples that had to be shipped to Victoria so the results weren’t available to us. Samples requiring electrophoresis in their analysis are sent to Victoria. Apparently there have been some issues with the transport of samples. Maybe the samples coagulate on route, maybe they get lost. Who knows. All I know is that the results of these lab tests tell me how I’m doing and can give me confidence in asking the right questions of my oncology team. It’s okay this time because I just got a new set of tests. They’d better come back readable, that’s all I have to say about that. Hear me VIHA? Now, on to more important things.

I wrote this at the end of my blog post entitled Overdiagnosis? I promised to get back to it so here we go.

In my view, my destiny is to die. Like all other living things on this planet, living and dying are the same process and life depends on death for its continuation. No death, no life. I feel that in my very bones! That’s where my oncology team is doing battle with my own body to try to keep me alive a while longer. Of course, eventually whatever the oncology team will do won’t be enough and I’ll die.

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out?…I think science and medicine have a lot to learn about us yet.

So, let me address one question at a time. Our bodies are ephemeral things, programmed to ‘die’, which means programmed to return them to the pool of raw material available to other organisms as they organize matter into various structures, themselves programmed to ‘die’. The body ‘shuts down’ in a number of ways depending on circumstance at the time of death. If you get shot in the heart, the process is quick, but immediately cells ‘know’ what’s going on and act accordingly. When my mother died, the nurse in the care home where she lived explained that staff can tell when a person is close to death by looking at their feet and legs. The weaker the heart gets, the less it can pump blood to the extremities. That means that the feet, then the legs show progressive signs of blood loss, losing colour and tone. Maybe that will happen to me. Whatever the circumstances, our bodies are prepared for the moment of death and ‘know’ what to do. Our minds are another thing. I’ll get back to the mind in my next blog post.

Cancer is as natural a process as muscle building. In my case, the likely culprit in triggering my myeloma is an oncology gene, not a factor exterior to my person like an environmental carcinogen, and my immune system was likely complicit in making sure myeloma spread to all of my bone marrow. My bone marrow, it seems, just got tired of producing marrow and started to produce myeloma protein instead, crowding out the cells that produce hemoglobin and other healthy blood cells. I really don’t think that that is a pathological process. Pathology implies that there’s something wrong with the body breaking down and dying. There isn’t. Dying is as natural to us as being born. The problem is that our big brains have a hard time letting go so they unleash our minds in a futile battle against entropy. Ultimately, they deny death itself. We’ll get back to that next post.

I think it’s reasonable to ask the questions I pose above: What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? If cancer and other ‘deadly diseases’ didn’t exist we’d die from other causes. Simple as that. So, if medicine eventually ‘cures’ cancer or heart disease, or stroke, it will just have to move on to do battle with whatever other cause is determined to kill us. Scientific medicine is based on a pathology model so is organized to do battle with disease and death. That means that it assumes that there are normal ways to be a human and pathological ways. The idea is to ‘fix’ the pathological ways to bring the human back to ‘normality’. Unfortunately, there is no way to fix death, although there are a variety of ways of conceiving of death (but that’s the subject of my next blog post.). So what would happen if science gave up on the pathology model? It would have to study what is ‘normal’ human development, and not be fixated on correcting what “goes wrong”. It would have to cease thinking of disease and death as evil. Of course, evolutionary models are gaining in importance and they aren’t pathologically based. Furthermore, I’m sensing glimmers of the recognition of the weaknesses in the pathology model in the medical clinic, but pathology is a strong draw and won’t likely go into abeyance anytime soon as a favourite basic framework for the practice of medicine. I figure that until science and medicine face reality, the suffering sometimes caused by attempts to prolong life will have to be closely scrutinized along with the Hippocratic oath, and we won’t be able to deal with death as a natural part of life. So where does that leave me?

I can tell you that I’m not convinced that chemotherapy is the best course of action for me. Yes, it will likely allow me to live longer, but how long? And in the meantime, I get obsessed by my lab results and Carolyn and I reckon time by where I am in my chemo cycle and how that makes me feel. Not sure that’s such a good thing.

32 This is no fun at all.

~ Roger JG Albert ~ 3 Comments

Well, this is no fun at all.

I’m not silly enough to believe that a life with myeloma would be fun, but I’m kind of disappointed that it’s been such an unmitigated downer. I am, I can now see, destined to drag this goddamned disease with me into the grave. Come on, I knew that! Still, a bit of a break now and then would be welcome. Is that too much to ask?

Actually, I think the nastiness I’m experiencing in spades right now stems mostly from the chemo meds rather than from the myeloma itself. This past week would support my idea that the meds are as bad as the disease at the moment for making me feel tired, dizzy, and in pain.

I went to the hospital on Thursday for my bortezomib shot after taking all the rest of my chemo drugs in the early morning. I expect Thursdays to be non-days, and this one was certainly that. A non-day is one when I can’t gather enough strength to do much of anything. However, Friday and Saturday also turned out to be non-days and Sunday wasn’t much better.

I felt a little beaten down. Of course, I should have expected it because my local oncology GP did warn me that they were going to ‘challenge’ me with my chemo med doses. No more mamby-pamby half doses for me! I was to get the full meal deal! Yes, indeed. Silly me.

Then I figured that maybe I needed a good dose of positive thinking to counteract all of these drugs. Maybe all I needed was a little endorphin fix. After all, I used to teach positive thinking on the Knowledge Network back in the ‘good ol’ days’ of 1986 to 1992. I used to teach as Ehrenreich points out “that on many levels, individual and social, it is good to be ‘positive,’ certainly better than being withdrawn, aggrieved, or chronically sad.”*

The problem is I’ve learned a few things since the early 1990s, not the least of which are the limitations of positive thinking. The American Cancer Society on its website states very clearly:

An important part of coping with a cancer diagnosis is recognizing emotions and feelings. Treatment that deals with our emotions and relationships (sometimes called psychosocial interventions) can help people with cancer feel more upbeat and have a better quality of life. But there’s no good evidence to support the idea that these interventions can reduce the risk of cancer, keep cancer from coming back, or help the person with cancer live longer. Still, things like group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.

https://www.cancer.org/cancer/cancer-basics/attitudes-and-cancer.html

So, it seems that belonging to a support group has some positive effects, not on survival or anything like that, but in feeling less tired and in stress reduction. There is a support group in the Valley. I haven’t attended any of the meetings yet. I’ve been too goddamn exhausted to do that until now, but maybe next month! Then, maybe I’ll be less tired!

The American Cancer Society, on its website, starts off with this: When a person is told they have cancer, they might find themselves wondering:

  • Did I bring the cancer on myself?
  • Can my emotions really make cancer grow or affect the outcome of my treatment?
  • Can I control the tumor growth by visualizing how my body is fighting the cancer or by thinking myself well?
  • Would relaxation or keeping a “positive attitude” help cure my cancer?

I can easily reply an emphatic NO! to all these questions and the website goes on to refute each in turn.

Ehrenreich writes:

In the rational explanation that many psychologists would offer today, optimism improves health, personal efficacy, confidence, and resilience, making it easier for us to accomplish our goals. A far less rational theory also runs rampant in American ideology—the idea that our thoughts can, in some mysterious way, directly affect the physical world. Negative thoughts somehow produce negative outcomes, while positive thoughts realize themselves in the form of health, prosperity, and success.✤

The upshot of the idea that negative thoughts produce negative outcomes is the notion that people bring their diseases on to themselves by thinking negatively. Never mind that this idea is completely debunked by the American Cancer Society and people like Barbara Ehrenreich, there is a strong current of belief ‘out there’ that we are the victims of our own negativity. That goes for people with chronic illnesses, auto-immune diseases, and cancer. If you’ve got it the ‘reasoning’ goes you’ve brought it upon yourself.

This of course dovetails nicely with the predominant capitalist morality in our culture which states that individuals are inherently responsible for their actions and weakness of all kinds is abhorred, shunned, and denigrated. If people exhibit any signs of weakness, whether they are poor or in ill-health, it stands to reason that they must be responsible for their condition. That’s why people, especially those caught up in a full-blown subscription to capitalist morality, often go to great lengths to hide their poverty and ill-health. They are also the ones that tend to judge most harshly the poor, the homeless, the disenfranchised, the physically disabled, the chronically ill and the aged, even if they themselves could be included in any one of the categories I just mentioned.

Myeloma is a disease of the bone marrow. It’s entirely organic. As of yet there is no cure for it. It will not respond to positive thoughts or negative ones either, for that matter. Ehrenreich writes that “There is a vast difference between positive thinking and existential courage.” ✦ If there’s anything I strive toward it’s existential courage. However, if you catch me in a moment of deep angst over my imminent (yes, ten years is imminent) death, cut me some slack. I can’t always be perfect!

__________________________________________________

*Barbara Ehrenreich, Bright-Sided: How Positive Thinking is Undermining America. 2009. Kindle Edition, Location 89.

✤Ibid., Location 125.

✦Ibid., location 145.

31 Interesting Couple of Days

~ Roger JG Albert ~ 2 Comments

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.

30 Living in the Shadow of Death

~ Roger JG Albert ~ 4 Comments

Strangely enough, I find myself wondering about what it would be like to live on death row.

We don’t have death rows in Canada, but there are about two thousand six hundred Americans in twenty-nine states right now sitting in cells awaiting their deaths by lethal injection or by other means, depending on the state. Most are still waiting for their date with the devil because they can appeal in so many ways and it seems that the average time now spent on death row is over sixteen years. There is an increasing hue and cry in the US about the time people have to spend on death row arguing that the wait itself is “cruel and unusual punishment.”

…the European Court of Human Rights in 1989 ruled that extended periods on death row violated a provision of the European Convention of Human Rights that forbids “inhuman or degrading treatment or punishment.” While acknowledging the legality of the death sentence in certain cases, it nonetheless forbade Britain to deport a German man to Virginia to face capital charges because he might spend years on death row facing “the anguish and mounting tension of living in the ever-present shadow of death.”

https://www.bnd.com/living/liv-columns-blogs/answer-man/article151691567.html

Right, “he might spend years on death row facing ‘the anguish and mounting tension of living in the ever-present shadow of death'”. Well, you know, I’m feeling a little like that myself, actually. I’ve been told I have an incurable cancer, but one that can be treated. It looks like I will go into remission sometime, probably in a few months, but who knows for how long. After that, if my myeloma doesn’t react to new treatments upon an inevitable relapse, I will surely die from organ failure. So, I wait and wait and wait not knowing if my next chemo treatment will work or not. The end result is preordained, however. No getting around that. How is this different from a death row inmate who applies for an appeal for his terminal sentence not knowing whether or not he will be successful? If he is successful this time, what about the next time? He knows that at some point the avenues for appeal will run out. When that happens he will suffer from organ failure like me, but that will be a systemic, total failure of all bodily systems as he lies there on a gurney in the execution room being administered a lethal injection of a deadly concoction of poison.

The analogy I use between my cancer diagnosis and a death row sentence is certainly not perfect. No analogy is. For instance, I don’t have to spend the bulk of my days in a small cell with bars. Nor do I have guards watching over me. That said, the comparison between my myeloma diagnosis and a death row sentence is fair if focussed on the psychological dimensions of an indeterminate cancer survival prognosis and an indeterminate execution date for the death row inmate. Chemotherapy is akin to an appeal: both buy some time but just postpone the inevitable.

I imagine that death row inmates are not pre-occupied twenty-four hours a day with the fact that they will eventually end up on the gurney in the execution room more than I am focussed all the time on the fact that my cancer is incurable, and hence terminal under the ‘right’ conditions. It’s just that the uncertainly of the situation is combined with the certainly of the outcome. That is disconcerting to say the least. I am definitely living “in the ever-present shadow of death”, but, of course, we all are. My shadow is possibly more opaque than yours at the moment, that’s all. Until I got my ‘death sentence’ I could go about my days thinking about projects I was doing, walks we would be going on, trips we would take. Now, it’s not so easy to do these things. Oh, it’s still possible, but utter exhaustion, chemo, lab and doctor visits, imaging sessions, etcetera, complicate things. I can only hope things will be different when I go into remission. I have a canoe that needs a new canvas skin and I have a sculpture I want to complete.

This all brings me back to the ‘value’ of sudden death. Sudden death does have a very important feature: its suddenness. No time to think about it, no time to live in anguish, etcetera. Looks like I won’t have the luxury of a sudden death. Maybe I will, we never know, but the way it’s going now, it’s not likely. So I have to figure out another tactic, or set of tactics to deal with the uncertainty of my life but with the certainty of my imminent death.

Problem is my death is not just about me. Yes, it’s an intensely personal experience, but other people are involved. Is it fair for anyone to focus so much on having a good death that they ignore everyone around them? Is it okay to be completely selfish about our own dying?

According to this op-ed in the Los Angeles Times, dying at home, although it seems like a reasonable thing to do, entails consequences, especially for care givers, and especially when home support and respite care are not available. This op-ed provides me with a not-so-subtle reminder to get my living will done. I probably shouldn’t procrastinate on that one.

29 A Balancing Act

~ Roger JG Albert

So, yesterday we went to the hospital for my usual Thursday injection of bortezomib and to get the rest of the meds I take orally. This time it was a bit different because I am now on a full dose of cyclophosphomide. I was a bit trepidatious about it. I wondered if the symptoms going from a half dose to a full dose might produce twice the level of distress from the symptoms. Would I have more nausea? Doesn’t seem like it at the moment. Would I have more brain effects like lightheadedness and dizziness? Doesn’t seem like it for now. At this point it seems like it’s business as usual. I may lose my hair with the added dose of cycloformaldehyde (my name for cyclophosphomide) but that’s no big deal, I could also see darkening of skin colour and nails hardening, etcetera. Those effects are yet to be seen. Another side effect of my chemo meds is infertility. Gee, that’s really got me worried.

My tummy seems nicely settled at the moment. That’s good. Hydromorphone (hydro for short) tends to make one constipated. It sure as hell did that to me. However, most of the chemo meds I’m taking tend to produce diarrhea. Do they balance each other out? Not necessarily. Pooing regularly is very important to me now and I sure don’t need to rip my anus apart with constipation. Bring on the Dulcolax. One in the morning and one at night seem to do the trick, but I have to be on top of it because things change so quickly with chemotherapy. At the moment all is okay on the anal front. Oh, and my butt gives profuse thanks to our bidet toilet seat. That was one very wise purchase!

Last night I took my usual dose of hydro (which I found out doing research a couple of days ago that it’s one of the drugs some states in the US use for lethal injections in capital punishment). Because I have my bortezomid injection earlier in the day and I’m prone to swelling and issues around the injection site, I was told to take Benadryl as a means of counteracting that. So, I took a couple of Benadryl and that helped me sleep for four hours or so, but the dexamethasone (dex) kept pushing back wanting to make me more hyper. I slept, like I said for four hours, but after that the dex won and I lay awake for most of the rest of the night. However, thankfully, the Benadryl did counteract the dex so that I wasn’t as hyper as I might get otherwise. I was quite relaxed, actually. Around four AM I took another one milligram of hydro because my hip was hurting me more than I am prepared to tolerate. That seemed to do it, the pain attenuated and I was more comfortable. Taking one milligram of hydro on another day under different conditions and it would have no effect. It’s all about timing and balance.

As I lay in bed last night unable to initially fall asleep I checked out the ceiling above our bed. A few weeks ago I noticed signs of wetness in the ceiling drywall. It’s pretty easy to tell if your roof is leaking and you have drywalled ceilings. The paint begins to ripple and buckle slightly as the water soaks through the drywall. I am prepared to put up with some of that, but we need to ensure that it isn’t getting much worse. We painted that ceiling not long ago so I had a baseline to work with. I don’t think it is getting worse, but the solution is to get up on the roof and tighten all the screws holding down the metal roof. Metal roof screws can loosen off over time and cause problems ten or fifteen years after installation so it’s a good idea to tighten them down periodically. We’ve done that, thanks to Tim (our son-in-law) on the studio roof, and the shop roof is only a couple of years old so no need to do anything with that roof. Now, it seems, we have to do the house. I’m not about to go up there, neither is Carolyn. We’ll have to hire somebody to do that, somebody steady on their feet and with good, non-arthritic hands.

Then I thought about the studio. It’s a bit of a mess at first glance, but I set it up to do some printing months ago and it does look like a mess. But it’s not really. Someone else looking at it or going in there sees mess (unless they’re an artist). It does need some tidying up, but I’m the only one who can do that, except for moving some of the heavier pieces of equipment and my sister-in-laws stuff. A number of people have shoved ‘stuff’ into the studio to get it out of the house and out of the way, but in doing so have damaged one of the paintings I was working on, punching a hole in the middle of it. It was bound to happen. Now I have to decide if it’s worth repairing that painting or not. Sooner or later I’m going to have to go into the studio and assess my capacity to work. I could maybe do a small woodcut or linocut or finish a painting or two. I’ve got lots I could do, but do I have the energy, and can I overcome the shakes that are a side effect of some of my chemo meds? And what about that arthritis? Those are the questions.

At one point last night, about twenty minutes after taking the extra one milligram of hydro, I lay on my back and realized, heh, I don’t have pain anywhere in my body! Holy shit. I can guarantee you that that is a rare occurrence. How did it happen? Well, as best as I can figure, I had all my various meds balanced out. The slow-release hydro was looking after my regular pain, the Benadryl was counteracting the dex as well as looking after the injection site issues. As long as I stayed still, I was painless! Of course, a few minutes later, when I decided to move to sleeping on my right side, I started getting pain in my thoracic area, something I’m quite familiar with. But heh! Lesson about balance taken!

Balance seems to be everything in my life at the moment. It sure wasn’t always a concern for me to the extent that it is now. Now, I could think about going into my studio and working, say, for an hour instead of for a whole day. I can think about going for short walks instead of running marathons thus balancing my need to rest with my need for exercise. I need to take time to think about how my meds work and how to get the most out of them without too much stress on my body and emotions. Age is a huge issues but instead of pining for the good ol’ days, finding age and cancer appropriate balance is working for me. Of course, I’m still going to die, but that will help out with the cosmic balance between life and death. More on this to come.

27 Well, this is a pain in the ass!

~ Roger JG Albert ~ 4 Comments

Literally. Although technically, the pain is in my hips. But as you know, hips are very close to asses so I feel justified in using the title above.

My hips have been giving me a bit of grief lately but usually only in bed at night. They don’t hurt during the course of the day. I tend to sleep on my side, usually my right side. I’ve noticed over the past few weeks, however, that over the course of a night, I might have to shift my body from my right side to my left side every hour or so. I could take more hydromorphone I guess, to alleviate the pain, but I feel like I need to have some idea of what’s going on in my body. Trying to eliminate all pain all the time seems ridiculous to me. Us humans are built in such a way as pain is pretty much a given whether from overuse, as in doing too much exercise, from injury via trauma, or from things like appendicitis. I want to know what’s going on in my body and it’s pretty hard to do that if I’m always zonked out on opioids.

Pain, pain, pain! I’ve had lots of that in my lifetime although just looking at me you wouldn’t know that. I look pretty good for an old guy. Still, pain has been an expected companion most of my life. Mygawd, in my early twenties I had a laminectomy, a disk removed in my the lower back because of a planer mill accident, but I’ve already mentioned that in a previous blog post. I had to be peeled off the ceiling a number of times from that one. No pain has ever stopped me from doing things, however. It may have stiffled my dreams of being a world-class athlete, but it never stopped me from running and walking fairly long distances, and farting around in my shop and studio. Of course, I had to be careful. Sometimes my back would send out signals for me to back off, and I would, not being a complete idiot.

A few years ago, though, I had had enough with pain and my doctor had had enough of me complaining about pain, I guess, so he sent me to a pain clinic in Nanaimo. Well, that was interesting. I assume that pain clinics are good for pain caused by overt trauma and that sort of thing. My experience is that as far as chronic pain is concerned, they struggle with coming up with good solutions. At the end of my time at the clinic, they were thinking of implanting a tens machine in my side at the site of my 2002 kidney surgery. The site of my kidney surgery from 2002 still pains me. However, I wasn’t about to have a tens machine implanted in my body so the clinic and I parted company. The clinic still exists doing lots of good, I’m sure, and I still exist too, still in pain. Well, there ya go!

Over the last few months, as you know, I have been diagnosed with bone marrow cancer, just another reason to have pain. I have no shortage of reasons to have pain. Now, however, my family doctor is only too happy to prescribe opiates. He’s always been fairly liberal when it comes to prescribing pain medications, but now I especially appreciate his willingness to treat my pain with whatever it takes. One thing is that treating the pain from my bone marrow cancer also has the benefit of dealing with some of my chronic pain issues. That has been good although I’m still in pain. I’m certainly not trying to eradicate all my pain. Feeling pain means I’m still alive. Of course eating sticky buns has the same effect, but that’s a lot more pleasant than feeling pain as an indicator that there is still life in these old (now eroded) bones.

My oncologist, however, seems to be clueless about pain. When we visited him in Victoria last year I was in a lot of pain, obviously so, I thought. He told me to take a couple of Tylenol. He, he, he. A couple of Tylenol? Sure, dude.I can’t imagine he’s ever felt any kind of acute pain so he just can’t relate. Ibuprofen works well for me, but I can’t take anti-inflammatory meds because I have only one kidney. Pity. I think I could avoid a lot of opioid use if I could take anti-inflammatory meds. In any case, my oncologist, in exasperation, I think, because I keep telling him that I’m in pain, and he doesn’t want to hear that, decided that I should go to a pain clinic. Well, I was not particularly receptive to that, but after a little deliberation with Carolyn, I decided to humour him. So. off I go to the pain clinic only it’s not called that.

Yesterday, I got a call from ‘Leanne’ from the Palliative Symptom Management Clinic which has a branch here in the Comox Valley. Now before you get all weirded out by the word ‘Palliative’ in the title, don’t worry, I’m not getting signed up for end-of-life care just yet. Palliative care, it turns out, refers to pain management in general. We’ve come to associate it with end-of-life care, but it doesn’t have to refer to that. Leanna had lots of questions for me like: do you have a gun in the house? Are you depressed? Do you have place for the nurses to park when they come to visit you?

I’m looking forward to seeing what this palliative care group can do for me. The doctors involved may have good advice for how to manage my pain meds. Eventually they can hook me up to a huge bottle of morphine and I can blissfully drift off to permanent unconsciousness, but not just yet. My lab results are indicating that I’m heading toward remission so back off with the bottle of morphine!

We saw my orthopaedic surgeon yesterday and he’s ordered another CT scan of my right femur, the one with the bone excavations. He just wants to make sure the lesion isn’t getting any bigger because it has been more painful lately. So, next week I see my family doctor on Monday, then I go into the hospital on Wednesday for a visit with my local oncology GP, and to get a zoledronic acid infusion. I’ll probably get a CT scan this week too. On Thursday I go back in to start a new chemotherapy cycle, my third! Never a dull moment. Wish me luck!

25 Overdiagnosis?

~ Roger JG Albert ~ 10 Comments

In my last post I left you hanging with suspense! Well, in this post I have a couple of issues to raise that should quell any after effects of inordinate suspense left behind from reading my last post. One is about overdiagnosis, which I promised to raise again, and the other is about cancer itself and what would happen if it didn’t exist.

So, in her book Natural Causes, Barbara Ehrenreich addresses what she calls overdiagnosis. This is a situation wherein currently powerful imaging techniques can, for example, ‘see’ many more, and smaller, lumps in a person’s neck than was previously possible. The question is then put to the patient: “We’ve found a lump in your neck. What would you like us to do?” Patient, very concerned: “Is it cancer?” Doctor: “We don’t know, but we can always remove it.” Patient: “Well, let’s not take any chances. Let’s get rid of it.” Ehrenreich claims that in seventy to eighty percent of these cases in the US the surgery was unnecessary.

I have my own example of overdiagnosis. I had a parotid gland removed from the left side of my face years ago. There was evidence that it was enlarged, but nothing to say it was malignant. I had a choice to make and opted to have it removed. It was unnecessary surgery. Because of it I was left with insensitivity on the left side of my face and a scar leading from my ear down the side of my neck. It’s a crapshoot. How many people do you think would turn down the surgery?

Recently, Dr. Brian Goldman of the CBC’s program White Coat, Black Art, wrote in his blog about overdiagnosis. He writes that overdiagnosis “means identifying problems that weren’t causing symptoms and were never going to cause the patient harm.” The source for most of his information is a study led by Prof. Paul Glasziou, director of the Institute for Evidence-Based Healthcare at Bond University in Australia. It used data collected over a thirty year period by the Australian Institute of Health and Welfare. The results are quite astounding. Goldman writes:

The researchers found that, in men, 42 per cent of prostate cancers, 42 per cent of kidney cancers and 58 per cent of melanomas were overdiagnosed. In women, 22 per cent of breast cancers, 58 per cent of kidney cancers and 54 per cent of melanomas were overdiagnosed.

Overdiagnosis can arise from overly prescribed testing including screening tests like mammography. Increasingly sensitive imaging equipment can detect smaller and smaller lesions and tumours, benign or malignant. It’s often difficult to tell whether a tumour is benign or malignant. In the case of kidney cancers, invasive biopsies are not often carried out for fear of spreading cancer cells to adjacent lymph glands. So, surgery is a crapshoot. Do we operate or not? The default position is surgery because few people would be willing to take the risk of leaving a possibly benign tumour in their bodies.

To take this even further, Goldman’s blog post argues that even “incidental abnormalities” or cancers that would never have caused symptoms or led to full-blown rapid onset pathological mitosis are being surgically extirpated. We probably all have asymptomatic cancer cells in our bodies that may never result in any health threat because of them.

In the September 11, 2017 issue of The New Yorker Siddhartha Mukherjee is back at it with a thoroughly provocative article entitled: Cancer’s Invasion Equation: We can detect tumors earlier than ever before. Can we predict whether they’re going to be dangerous?

Good question. The gist of Mukherjee’s argument in this article is that two things are required for a full-blown cancer to make itself known which he metaphorically refers to as the seed and the soil. This metaphor he borrowed from a 19th Century English doctor interested in cancer research, Stephen Paget. His idea was that a cancer cell (the seed) would grow only if the local bodily ecosystem (the soil) was conducive to that growth. It could happen that the cancer cell falls on barren ‘soil’ and does not grow and divide. On top of that, on close examination cancer cells could be found that would never produce any symptoms. Some cancer researchers were now becoming human ecologists. Some even began to ask why people don’t get cancer and not just why they do when they do.

In my case, I may have carried the myeloma ‘oncogene’ for a long time but my ‘soil’ wasn’t yet ready to receive it. It may be that it was just a matter of time in my case, age being a big factor, but there may have been others that contributed too to creating the right conditions for my myeloma to go from dormant (smoldering) to active. Now, there’s no turning back for me. The seed has been planted and the hemoglobin garden in my bones is turning into an oncological garden.

There’s a final note towards the latter part of Mukherjee’s book The Emperor of all Maladies that makes me realize how little we know about cancer at this stage and about the process of dying and what that entails. Mukherjee writes:

“Taken to its logical extreme, the cancer cell’s capacity to consistently imitate, corrupt, and pervert normal physiology thus raises the ominous question of what “normalcy” is. “Cancer,” Carla said, “is my new normal,” and quite possibly cancer is our normalcy as well, that we are inherently destined to slouch towards a malignant end. Indeed, as the fraction of those affected by cancer creeps inexorably in some nations from one in four to one in three to one in two, cancer will, indeed, be the new normal—an inevitability. The question then will not be if we will encounter this immortal illness in our lives, but when.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out? Stay tuned. I think science and medicine have a lot to learn about us yet.

24 My Brain Hurts!

~ Roger JG Albert

We went for a walk this morning around the airport on the River Walkway in Courtenay. It was overcast and coolish, quite pleasant as far as weather goes for this time of year. The ducks are getting up to their mating ways and even the redwing blackbirds have started singing. I think one or two of them may be rushing it, trying to get a head start on the mating action. It’s a good walk for me because it’s flat and paved. I’m still not that steady on my feet and I’m not sure about that lytic lesion in my right femur that lately seems to be getting a little more ‘present’, insisting that it not be forgotten.

My brain, frontal lobe really, also insists that it not be ignored. It tells me that it needs more and more information about the bad boys excavating my bones, crowding out and bullying the good boys that are working hard to make hemoglobin for me. It threatens never to let me rest until it’s satisfied, and from what I can tell, it’s a long way from being satisfied. I have been feeding it, though. It’s not being ignored even though it does sometimes have to take a seat and wait until other parts of my body are willing to participate. My amygdala is pretty insistent these days. The various parts of my brain don’t always want to be nice and play together. Some days they are more likely to coöperate, generally those two or three days, Mondays to Thursdays, just before I get a new load of chemo drugs on Thursday mornings. On other days, organized rebellion reigns. Thursday evening is my hyper time, no sleep. Fridays are a mix of hyper, lightheadedness, dizziness and near disorientation. My whole body tingles and my feet are somewhere between freezing and very cold. Saturday my bortozemib injection (which I get on Thursday at the hospital) site on my stomach starts to get inflamed and begins to itch. I have to take antihistamine to counteract that, but I’m a bit worried that the inflammation is getting worse with every injection. The area around the injection site gets very hot and red, and itchy beyond description. This is when Carolyn and I pore over the literature on the various drugs I’m taking trying to get a handle on what I’m experiencing in terms of side effects and indulging my frontal lobe with a bit of a snack. From what my oncologist told us in our last interview, I could be on this particular chemo protocol for at least another six months so I’d better get used to it. Of course, things constantly change as we go along so past experience is not necessarily a good measure of what I can expect in the future. Right now, getting ‘used to’ anything seems like a little far-fetched.

Thankfully, there are periods of time when I can sneak in a bit of reading and even some writing. It’s a good thing that I write fairly quickly because I often am too preoccupied with my symptoms to concentrate for any length of time or keep a train of thought going. My trains of thought are always getting derailed. Generally, if I get an hour or so of reading or writing in at a time, I’m happy. That works for me because what the hell else have I got to do?

Lately I’ve been reading a variety of things. I get a bit overloaded with books, articles and other materials dealing with cancer every now and then and that’s when I pick up a book on Medieval Europe. Right now I’m reading a book called The Myth of Nations: The Medieval Origins of Europe, (2002) by Patrick J. Geary. It’s an easy read. Just right for bedtime. The composition is a bit clunky and Geary probably needs a better editor, but eventually he makes his point, not that I’m going to discuss it here. The books, reviews, and reports that have claimed most of my attention lately have been on the topic of cancer. Too bad I wasn’t reading them on a nice beach on the Tropic of Cancer. 🙂 They are important for feeding my frontal lobe.

I mentioned in a previous blog post Barbara Ehrenreich’s book: Natural Causes. It’s polemical and iconoclastic to the core. I love Ehrenreich for the way she hounds the medical profession and business for excesses of enthusiasm for making money at the expense of the quality of life of patients. In this book she rails against overdiagnosis, a point to which I return later, and the false emphasis on building the immune system to fight cancer and other serious illnesses. She notes that macrophages, special white blood cells are an important aspect of our immune systems in that they attack and destroy invading bacteria and other infections at wound sites. The problem is that they can also provide cancer cells with conduits for metastasis, creating the means by which cancers can spread to distant parts of the body. She argues that we shouldn’t be such cheerleaders for our immune systems because they could very well be traitors in our midsts.

I just finished reading another of her books: Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America (2009). This book trashes one of the most iconic delusions of American life, the power of positive thinking. In Natural Causes she applies this idea to medicine, the wellness industry and cancer treatment when undue optimism detracts from realistic appraisals of health and illness. She argues that from the perspective of wellness and mindfulness whereby we have control over our bodies, every death is a suicide. The argument goes that if we control our bodies with our minds and we die, it must mean that our minds wanted us to die! Well, there ya go. I guess mindfulness has its limits. Ehrenreich is not too keen on negative thinking either though. She argues for critical thinking, not positive or negative thinking. Fair enough.

The book that is most relevant to cancer is one that I quoted from in my last post. It’s called The Emperor of all Maladies: A Biography of Cancer (2010) by Siddhartha Mukherjee. It’s a sweeping analysis of cancer detection and treatment over the past few centuries. Of course, most of the cancer action has occurred over the past few decades and many of the protagonists in the book are still alive. Mukherjee interviewed many of them for his book, bringing to life the stories he tells about the development of cancer treatment drugs and protocols. I had no idea that there was such a divide between clinicians and scientists in the cancer world. Biologists and other scientists, Mukherjee notes, have often been at odds over knowledge and treatment. Oncologists want to treat patients. Scientists want to know more about the disease and its genesis. What’s clear is that cancer treatment using surgery, radiation and chemotherapy has moved ahead in leaps and bounds in the last thirty years. ‘Success’ in treatment, often measured in months of survival, has grown exponentially over the last three decades. Drugs called ‘biologics’ are increasingly used to target specific types of cancers in certain types of people. In other words, cancer treatments are becoming more individualized, more targeted. This is all very encouraging, especially for someone like me who has cancer. However, there are problems and the sky ahead is not without clouds.

That’s the topic of my next post. This one’s already long enough. Stay tuned.