Beware of Dr. Vendedor de Aceite de Serpiente.

On my very first post in this series on my experience with cancer, the last paragraph reads:

Please don’t suggest any treatments or diets or whatever. I won’t be going to Mexico for any heroic treatments. (If and when I feel better we may go to lie on a beach though.) I’m not desperate. I won’t be buying a juicer either and I’ll continue to eat the great, wholesome mostly unprocessed food that I currently eat but my body will follow, as it must, the second law of thermodynamics. I’m okay with that.

I still feel that way. I’ve clearly decided to go the chemotherapy route so I won’t, in desperation, try on some homeopathic ‘treatment’ or ‘cure’ for the myeloma that is my curse for the rest of my life. Neither will I do anything to boost my immune system. It’s my immune system that is partly responsible for spreading my bone marrow cancer to distal regions of my body by facilitating the movement of the myeloma protein in my blood via macrophages (if I read that right). No. My immune system is fine for dealing with outside sources of infection, but it can’t do anything about preventing internal insurrection by oncogenes and the like.

Lately, I’ve had a couple of other bloggers read my posts, bloggers with agenda. Barbara Gannon has a blog called Cancer is not A Death Sentence and another is by Brian Shelley and it’s called CANCER WARRIORS. I believe both Gannon and Shelley are sincere and well-meaning. Not only that, they display a passionate belief in what they’re doing. Gannon has found alternative dietary and medicinal ways of dealing with cancer. Shelley found God. The battle metaphor is the same for both bloggers. If you’ve been following my blog you’ll know that I am not likely to be convinced by either approach to dealing with my cancer. For one, we are all individuals with very different bodies, different genetic makeups, at different ages, with different genders, and different underlying physiological and anatomical dynamics. Cancer, although it is basically pathological mitosis, is expressed differently in each of us. What works for you in response to any given cancer at whatever stage it’s at may not work for me. Some people argue that cancer is cancer and it can be beaten no matter what. I don’t subscribe to that perspective. Some people may be misdiagnosed so it’s no big surprise when their situation improves. It was probably nothing to start with. Some cancers in certain people may go into spontaneous remission. Cancer and its various treatments are highly complex and I’ll go with science in dealing with it as much as I can. Anecdotal evidence just doesn’t cut it for me.

That said, conventional Western research science, medicine, and pharmacology are not perfect. Scientists, medical doctors, and pharmacologists are human and have human ambitions, needs, and varying moral standards. Some even cheat. Still, I think the scientific research protocols are the best way of finding out what’s going on in the world. All claims of miracle cures for cancer that I’ve run across are based on anecdotal evidence: The “I beat cancer. You can too.” type of thing. I’m not saying these claims aren’t real, only that they can’t be generalized and applied to everyone who has cancer. One problem I find difficult to deal with is the absence of ongoing scrutiny of the claims of miracle cures. I had a friend and colleague who tried everything to survive his cancer a few years ago, including juicing and trips to Mexico, but nothing worked and he died. But, again, that’s anecdotal evidence pertaining to one case only.

Of course there are huge ethical issues when doing double-blind scientific research on the effectiveness of treatment protocols. Siddhartha Mukherjee in his book The Emperor of all Maladies deals with many of the ethical issue in oncology. Recruiting people with cancer for a clinical trial, then assigning half to a treatment group and half to a placebo group is ethically charged. The placebo group is definitely at a disadvantage if the treatment works. The question then is when to switch them into treatment while still maintaining the integrity of the research project.

Nutritional studies are notoriously difficult to conduct in any kind of scientific way. This website addresses that issue and notes that some nutritional studies have been very successful, like the one finding that sailors died of scurvy because of vitamin C deficiency. But, overall, nutritional studies are notoriously difficult to carry out and are almost impossible to conduct using the standard double-blind protocol. The website ends with a statement garnered from a meeting of several nutrition researchers who find that a balanced diet is the best diet. They also note that: “Anyone who tells you it’s more complicated than that — that particular foods like kale or gluten are killing people — probably isn’t speaking from science, because, as you can see now, that science would actually be near impossible to conduct.” More on nutrition below.

Naturopathic cures and treatments.

I have no problem with naturopathy for some kinds of issues and treatments, but I have been highly sceptical of some of their diagnostic protocols, especially things like vega testing. This website debunks all kinds of naturopathic and other diagnostic protocols. The website Science Based Medicine is always a good place to check out whether or not a claim for this or that treatment is effective from a scientific perspective. Noting that here may betray my bias for science, but I have no issues with that. However, I also acknowledge that science based medicine is now being challenged more and more by what’s called evidence-based science. There are huge issues with evidence-based research, not the least of which a lot of it is funded by industry with serious conflict of interest consequences.

My interest is mainly in cancer research and treatments. This article from the Fred Hutch Cancer Research Centre provides a fair analysis of how oncologists can address patients who are reluctant to undergo chemotherapy because of the side effects. It argues that if a patient wants to go an alternative route they should still maintain contact with an oncologist who can monitor their ‘progress’.

This website called Nature Works Best highlights the research and findings of Dr. Colleen Huber, a naturopath who’s clinic offers alternative cancer treatments. I read her article detailing her work with 379 individuals with cancer. She claims a very high rate of success from 92% for the low-hanging fruit (as I call it) and as low as 29% for patients in advanced stages of certain types of cancer. She seems to have the most success with breast cancer patients who have already had surgery. It’s hard, then, to figure out where to ascribe responsibility for remission. Thirty-two of her patients died after following her protocols. She claims that many of the other ‘failures’ (deaths) are due to patients not following her advice, especially to not eat sugar, which she claims feeds cancer cells. Her table looking at each of the 379 patients is telling. I read it very carefully, and frankly I can’t see how she can boast a 92% success rate. One of the problems is that there are twenty or so varieties of breast cancer. She doesn’t tell us which or these varieties she’s actually treating. And ‘treatment’ like I said is often post-surgery.

She has had four myeloma patients and one MGUS (describing a sort-of pre-myeloma condition. She claims that one of those patients travelled a lot and eventually died of pneumonia. Another died after leaving treatment against her best advice. A third she reported in remission but now having problems (“R, then recent elevated blood labs”). This patient reported extreme fatigue with no change due to treatment. The fourth, she reported is in apparent remission (“AR Imp quickly; could not afford to continue treatment. Then recurrence; then stem cell tx. R”) So, the stem cell transplant seems to have done the trick. I can’t see how her treatments helped at all. Myeloma is incurable by all reports so it’s disingenuous to not be clear on that point in her documentation. Her table doesn’t mention the age of the patient. That’s a critical piece of information, in my mind.

Snake oil salespeople and over-the-top woo.

You could always get a coffee enema. There are clinics nearby. Read all about it! Then you can read what Science Based Medicine has to say about it. Or you can try medical marijuana as a treatment. Here’s what the American National Cancer Institute has to say about that. It suggests that there is no evidence that cannabis or any cannabinoids can treat cancer. It does note, however, that THC may be useful for advanced cancer patients in dealing with pain and issues around appetite. Alternatively, you could try an alkaline diet. See what Robert David Grimes has to say about this in a 2017 article in The Guardian. Grimes has a lot to say too about other alternative therapies too. Check out his article if you’re interested. You can always try juicing, but even the alternative of alternatives, the Oasis of Hope hospital in Tijuana, Mexico, doesn’t advocate juicing carrots: too high in sugar. To be clear, the Oasis of Hope does use chemotherapy as a treatment, but it’s much better known for alternative therapies.

What I’m not arguing here.

I’m not suggesting here that a proper diet, not smoking, drinking in moderation, etcetera are not important. They are. However, nutritional or dietary strategies for cancer treatment are largely unfounded.

I know that there are herbalists who have a strong commitment to assisting us in our drive for healthy living and I respect that. But when it comes to cancer, the Cancer Council of Victoria in Australia has assessed the contribution of herbs in cancer treatment and says:

Herbal medicines are often used to help with the side effects of conventional cancer treatments, such as lowering fatigue and improving wellbeing. Evidence shows they should be used in addition to conventional therapies, rather than as an alternative. AND

Although herbs are natural, they are not always safe. Taking the wrong dose or wrong combination or using the wrong part of the plant may cause side effects or be poisonous (toxic). Also, herbs used with chemotherapy, radiation therapy and hormone therapy can cause harmful interactions. All herbs should be prescribed by a qualified practitioner.

I was cautioned not to drink green tea as it counteracts the effects of bortezomib, one of the meds I’m on. There are other contraindications too. And just because indigenous people have used some plants to treat all kinds of ills, it’s probably not a good idea for us to apply indigenous strategies willy-nilly. For example, cedar tea although very high in Vitamin C can be very toxic but people are drinking it and I expect they are not always in full knowledge of its effects on the short or long term. Carolyn and I have used products from Harmonic Arts and from a local herbalist to good effect but not specifically for treating my myeloma. That said, there is ongoing promising research. There is evidence that curcumin, a compound found in turmeric, can act as a proteasome regulator, and could work with drugs like bortezomib to suppress the growth of cancer cells in some types of cancer. A report in MyelomaCrowd notes that curcumin needs to be modified to stay in the body longer if it is to be effective against cancer cell proliferation.

I’m all for caution when it comes to my cancer treatment. I’m not happy being on chemotherapy but I don’t see any alternatives out there that are trustworthy or based on more than anecdotal evidence. I think I’ll stay the course. That said, I will continue to eat well, have the odd beer, rest but also get some exercise (as much as my condition allows me to).

Stay safe out there!

Two Days in my Diary: Saturday morning addendum.

6:15 AM Saturday March 21st.

I probably should have included Saturday in my original post from yesterday, because it’s also a down day due to my chemotherapy treatments. I had another dex night last night. I got my usual acid reflux but it came much later than usual, around midnight, and lasted until around 5 AM. My tinnitus is about as bad as it gets right now. I slept, I really did, for a couple of hours between 10:30 and 12:30, then I got up to pee. I sort of slept again until 2 PM but that was it. I woke up startled by a very odd dream. So I listened to some music and read some Fernand Braudel about Medieval Europe while I tried to process this weird dream I had just had.

I woke up at 2 AM in a sweat. That’s not unusual either in the first three days after taking my meds, but this time, like I just said, I woke up from a very strange dream. I wouldn’t say it was a nightmare; it was much more matter of fact than that and it was very vivid.

So, in my dream I invented a portable guillotine. It was portable with a blade a metre long and 30 centimetres thick and sprung like a chop saw. It looked more like the cutting end of a pair of garden sheers than a traditional guillotine but it worked like a guillotine. I invented it to cut up yard waste like sword fern fronds and twigs, that sort of thing. I think it’s because yesterday Carolyn worked in the yard doing clean up and she cut up a lot of sword ferns to the ground. I guess I invented this ‘machine’ to chop up these fronds to make them more compostable rather than take them to the dump in the trailer. In any case, it worked well, but then someone stole it from in front of my workshop one night. I was pissed off but resigned to just building another one. Then the neighbours started reporting that dogs and cats in the area were turning up decapitated. I figured whoever had stolen my guillotine could easily be doing this. I was mortified. Then I wondered if we’d start finding people decapitated, maybe up the logging road. Now I felt really shitty. All of that mayhem was my fault for inventing such a dangerous tool. Then I woke up.

I’ve been wracking my brain to try to wring some significance out of this dream but I can’t seem to figure it out. I invented a dangerous tool for a good cause but then found it used for very destructive purposes by person or persons unknown. What can I make of that?

In any case, today will be strange. I’ll probably have to sleep much of the afternoon after I completely come down from my dex high and am left to deal with the fallout from the cyclophosphamide and bortezomib. For my headache I’ll take a couple of Tylenol. Strange, but my peripheral neuropathy is attenuated at the moment. I wonder how long that will last. The burping is driving me nuts!

By the way, I came up with my epitaph. It goes like this:

Here lies a man who did a lot of bad things in his life.

Here lies a man who did a lot of good things in his life.

At the end he hoped it all balanced out and he would

Neither go to heaven nor to hell. He, he, he.


Have a nice day.

Me, my Body and I: Part 2

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.

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* “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

To live and to die.

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.

A Balancing Act

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.

Moving on up.

So, I’m over the shock of my cancer diagnosis. It’s been four months, after all. That doesn’t mean I’m happy about it, but it does mean that we (and I have to include Carolyn in everything here) have moved on from the initial storm of emotions around the diagnosis to settling in for months of chemotherapy and complete disruption of our lives. We are moving into a new routine. Every day is almost predictable, at least for now. I can’t say that I’m bored at this point, but I certainly am getting restless. I’ve gone down to the studio a couple of times lately and poked around. I really do miss drawing and printmaking. I want to get back to them soon and I really want to finish a small sculpture I started last year. Problem is I’m so exhausted all the time.

Not all people with cancer have the same reaction to the disease itself nor to the chemo meds and the opioids. Not all cancer patients are anemic all the time and I’m told that not all experience a lot of pain or the exhaustion I’m feeling. Every cancer is different and close to two hundred types have been identified. Breast cancer is the most common followed by lung and prostate cancers although there are several different varieties of all three types of cancers. Multiple myeloma is very uncommon and is the rarest of the blood cancers. Lucky me.

This morning we saw the local oncology GP and he told us that everything is going well with my therapy but that for the third cycle starting tomorrow they will be punching up the cyclophosphomide (the main chemo med) to one hundred percent. I didn’t know this, or I forgot, but I haven’t been up to full dose on this chemical yet. The doctor said that they started me off slowly to ensure that I could tolerate the shit, but now they were going to have to ‘challenge’ me. I have no idea how that is going to affect the side effects I am inevitably going to get except to amplify them. Yep, that’s what I can expect, amplified side effects. Yum.

I also learned this morning that I have six more chemotherapy cycles before they can consider whether or not I’m in remission. That means I will know by late August or early September. Oh well, I didn’t want to do anything this summer anyway, now did I. The way I’m feeling at the moment, I’m thinking that I might be able to get out on some short excursions come the sunnier, warm weather, but laying about the back yard by the pond sipping a cold drink doesn’t seem so bad either. Today is the last day of my previous cycle and the best of the whole lot because I’ve had a bit of a ‘holiday’ from my meds. Tomorrow, I’m back in the trenches with full-blown cyclo, dex, and bortozemib. I had an infusion of zoledronic acid today too, that’s a bone strenghtening drug. It gives me a raging headache so I take a couple of acetaminophen to help deal with that.

I have to get back to the hospital in a couple of hours for a CT scan of my right femur and cervical spine area. My orthopaedic surgeon wants to check my cervical spine for any changes in my degenerative disk disease and arthritis, my other nemeses. He also wants to determine if the excavators in my femur are in any danger of breaking through the bone or not. I’ve been experiencing more pain in the area lately and he wants to stay on top of that. Good for him. I like his attitude.

Enough for now.

Overdiagnosis?

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.

My Brain Hurts!

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.

Calm down!

The piece of music posted here below came to my attention when one of my FB buddies, Ed Brooks, posted a link to it. It’s available on YouTube along with a lot of other fabulous and calming music by Arvo Pärt and others.

Yesterday was an especially challenging day for me and I was right bent out of shape because I felt so helpless and weak, totally exhausted, not being able to help Carolyn with the snow shovelling and needing to go to the hospital. At the end of the day yesterday I listened to this piece of music and it almost brought me to tears. I listened to it again as I lay in bed getting ready to fall asleep and it was like a lullaby. I actually fell asleep listening to it. I woke up later and played it again.

Today, I’m better. We went to the lab this morning for more bloodwork and that was fine. It’s bloody cold in Cumberland this morning and we have another snow warning in the forecast. Whatever. We can use the truck to get around until the end of next week. We were supposed to take it in Tuesday to get some body work on it, but Carolyn called the autobody shop and changed the appointment until Friday. I hope that delay will allow us to get the car out of the yard or at least at the bottom of our fifty metre driveway.

We see my Victoria based oncologist, Adrian Yee, on Tuesday via teleconference from a ‘studio’ at the Comox Valley hospital. Remote examination! At least I get to talk to him and discuss my progress. Like I said, I’m feeling better. I’ll know I’m really better when I can get down to my shop or studio and finish a painting or carve some wood. Today I’ll do some drawing. That’s a start, at least.

Have a good day all of you and count your blessings!

Fuck cancer!

Fuck Cancer mugs

[WARNING: this post contains references to visualizations some might consider offensive, and I regress to being a potty-mouth. Be forewarned.]

I’m not feeling particularly creative, effusive or positive today. In fact, I’m feeling hard done by, angry and unhappy. Hence the title of this post. In fact, I’m feeling fucking crappy, as crappy as ever, or even more so, because for the last three weeks or so I’ve had a cold to compound the effects of my myeloma and the chemo meds I’m taking. Most of the time all I’ve been able to do is sleep, or stare out the windows.

We just came back from the hospital an hour or so ago. Carolyn had to shovel huge piles of snow blocking our driveway and covering our truck just to get us there. Carolyn is my warrior! At the hospital, I got an injection of bortezomib (a proteasome inhibitor) into my abdomen and an infusion of zoledronic acid (a bone strengthening drug that has not-so-fun consequences for my kidney). They gave me 4 grams of zoledronic acid rather than the 3.5 I got last time. I have no idea why. They have a complex formula for deciding how much to give me including my weight and my lab results. Now, I’m just waiting for the chemo meds to kick the shit out of me as they surely will. At least dexamethasone gives me a bit of a boost of energy allowing me to carve a few words onto this ‘page’ out of my weary brain. The sculpture I’m carving I don’t feel is particularly elegant or fine, but my tools are dull so it’s what you get.

Do you like the mugs? Carolyn had them made by a very talented potter in the Valley who had previously made a set of mugs we bought from her that resemble these a lot except for the swear words.

Yeah, fuck cancer! I’m so sick and tired of being sick and tired! And now, to compound my shit, I have to worry about peripheral neuropathy. [I have complained about this before, but read about it again for fun.] I’ve had peripheral neuropathy for some time, many years actually. Peripheral neuropathy (PN) is a condition where the peripheral body parts, arms and legs to be precise, get to feeling numb, painful, and full of weird sensations like having bugs crawling all over them (something I’m feeling a lot at the moment). One of the side effects of the cocktail of chemo meds I’m taking is peripheral neuropathy. Left untreated it can lead to immobility, loss of sensation and life in a wheelchair. This is one of the nasty side effects of my meds, one that has forced a friend of mine who also has myeloma off this particular cocktail that’s often referred to as CyBorD. I’ve written about this before. I have to keep a close watch to determine whether or not the symptoms of PN are getting worse or not. It’s just one more thing to keep my mind occupied with my illness. Fuck cancer!

Did I say Fuck Cancer? Right, I did. And I mean it. I’m not sure what else I would prefer to die from, but cancer is not the companion I would have wished for on my way to the crematorium. Maybe a six-ton weight falling from the sky onto my head would be preferable, I don’t know. I have no way to assess the quality of various means of dying nor the means of communicating the results of any research I might do on the subject to you after the fact.

I may have already written about this…remember that brain fog is a classic side effect of anemia and myeloma, repetitiousness and forgetfulness probably are too… I read somewhere that an artist was asked if he wanted to be cremated or buried after he died. Instead of answering as you or I might he replied: “Surprise me!” Yeah, that’s the way I feel about it. I won’t be around to give a shit one way or another, but I have said I want to be cremated. I have had too many nasty dreams about being buried to want that as an option. Now, though, I’m starting to have moments when I visualize the crematorium attendant pushing my body into the furnace and my skin starting to cook like a pig on a spit as the fire gets hotter and hotter. I know, it’s gross and morbid. Sorry for bringing it up.

So, to change the subject, I’ve had a few moments of lucidity lately between bouts of feeling really nasty because of this cold, and I’m reading (in bed) about my ancestors here in Canada. My family goes back a long way as immigrants to Canada, back to early in the 18th Century actually on both my maternal and paternal sides. I’m finding out that my Norman ancestors called LeGuerrier (the warrior in French) were very likely actual warriors. A thousand years ago the Normans were highly trained and fierce warriors. They not only conquered England in 1066, but (I’ve just read) also became rulers in Sicily after they were invited there to help deal with an enemy. According to a book I’m reading they were often called on as mercenaries. One of the Norman rulers in Sicily was called Roger. His son Roger II took over after Roger I died and he was not known for his tender generosity. Roger that! In any case, the first Leguerrier in Canada can be traced back to 1748. He came earlier than that, but that date is the first mention of him in ‘the books’. He died a fairly old man. Infant mortality was very common then but so was death at any age. From what I’ve been reading living to reproductive age almost seems to have been the exception rather than the rule. These days I’m thinking about my ancestors, their lives and their deaths, and my place in the lineage. My grandpa Leguerrier died at the age of 76 in 1975 from stomach cancer if I remember correctly. My father died in 2007 at 96 years of age. We all come and go. Some of us live longer that others of the same generation but in the case of my grandpa Leguerrier and my father who were only fourteen years apart in age, I think I prefer to follow my grandpa’s lead because my father died after years of very poor quality of life, unable to feed himself because his hands were so distorted by arthritis. He was deaf, had been for years, and he was either in bed or in a wheelchair. To make matters worse, my mother had severe dementia and didn’t even recognize him on his deathbed. She was heard to point to him and say: “Who is that old man in the bed there anyway?” My mother died two years ago at 94 years of age. I can’t imagine she knew she was dying at the time. I’m not sure she knew that she was alive. Hey, wait a minute…