62 Meh…and sporangia.

Not much motivated to write about my myeloma journey right now. My last post was on August 23rd. Today is Monday, September 14th. For some time I tried and succeeded in putting out a blog post almost every week but lately with the uncertainty around my treatment, I’ve lost interest. So, it’s been three weeks since my last post.

I talk to my local oncologist in a couple of days for fifteen minutes or so but he doesn’t make the major decisions around my treatment. I have a meeting scheduled for the consulting oncologist next month, but I have no expectations around that consultation. It will be the first time I talk to this guy. He’s new in town. I’ll be just another file to him.

From my last set of blood tests I know that my blood is pretty much normal. That will change. Technically, if I’m considered in remission they’ll do more blood tests every three months and reconsider my situation then. But right now, I don’t know if I’m in remission or not.

I already told you that I decided to cut my chemotherapy short about six weeks ago now because one of my chemo drugs was playing havoc with the way my muscles are supposed to respond to the neurological signals controlling them. My thigh muscles are particularly affected by bortezomib (trade name: Velcade), the offending drug, to the point where I experienced severe pain and weakness in my legs, especially in my thighs. That situation seems to be improving slowly. I’m taking some good pain meds and they are helping the situation, and I’m seeing a physiotherapist, but I think just being off chemo is making a big difference.

It’s been a roller coaster ride over the last few months. I’m tired of it. Thankfully, being off chemo is giving me some respite although I still have great fatigue and restricted mobility. I am doing better and I’m happy about that. Lately I’ve been able to draw and paint a little and use my microscope, telescope, and iPhone to put together some interested projects. I can’t do anything for more than a couple of hours at a time, but that’s infinitely better than staring at the ceiling all day long. I’m actually enjoying myself. I have a secret dream, however, that I shared with my physiotherapist. I shouldn’t tell you because if it doesn’t happen I’ll be sadly disappointed, but I’m determined to get into (and out of) our canoe next month and paddle around for an hour or so without assistance and without dropping like a heap on the ground unable to get up. That would be cool. I also want to drag the trailer to Strathcona Park next month for a couple of days of camping. My real secret though is that I want to restore our canoe. I can’t face that task right now, but maybe later this year, who knows. Over the past while I’ve accumulated most of the materials and tools needed for the job. Now I just need energy and strength in my legs.

In any case, while I wait to see what will become of me and how much time I have to live, I’ve been able to occupy my time productively within the limits of my illness. Well, it wouldn’t do to just idle away my time now, would it and just passively wait to die? No! In our world idleness is the work of the devil! Can’t have that.

Wait, I can see it now. I’m on my death bed, hours if not minutes from expiring permanently, but I think that I’ve left something unfinished. No! Can’t do that. Must…live…long…enough…to finish…this…blog…post. And I do. And I die happy.

Of course worrying about a bucket list or unfinished projects or missed communications is all moot. After we’re dead, there is nothing. Concepts like regret are irrelevant. Even if one believes in an afterlife, I can’t imagine anyone thinking that afterlife would be taken up with regrets about things left undone or unaccomplished in life. What a drag that would be.

One thing that’s given me a lot of pleasure lately, as I note above, is exploring the microscopic world with my microscopes and iPhone. And I’ve discovered that I can use my iPhone to record an image on my spotting scope. I’ve posted those images on Facebook so I won’t post them again here. However I will post here a couple of videos I did of sword fern sporangia. I posted a video here of an exploding sporangia some time ago while it was still attached to the leaf. This time I scraped the sporangia off of the fern leaf and that provoked them to open up en masse. The videos are at two levels of magnification. There’s a close-up one and one at a lower level of magnification.

The spores are quite visible after the sporangia have evicted them. They’re the little beige dots littering the area not covered by sporangia. I want a microscope powerful enough to have a closer look at spores, but what is interesting to me even at this level of magnification is that we normally associate movement with animal life and here we have a plant that is moving…with purpose.

I love that as I look at the world through a microscope it’s obvious that all living things on this planet have a lot in common. Carolyn and I watched a YouTube video (NOVA) the other night on DNA called What Darwin Didn’t Know. It really reinforced the fact that DNA is ubiquitous and that life is much more unitary that we think. We really are all in this together. It would be awesome if we could develop respect for all life, all of us that is, including Monsanto and Bayer executives, oil company boards, politicians and all of us. Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?

PS: I hope the videos work for you. If not, please let me know. For those of you receiving email notifications of my blog posts, you may need to go to the blog site to see them rather that stay on your email to view them.

PS2: My next blog post will be completely different from what you’re accustomed to read here. It’s about a brother I would have had if he had survived childbirth.

42 Dying Well – A Reprinted Article by Dorion Rolston.

I don’t often do this, but I find this article I’ve just read from Aeon quite compelling so I decided to reprint it here for you. You should check out Aeon. It’s a great source for thoughtful reading.

https://aeon.co/ideas/dont-take-life-so-seriously-montaignes-lessons-on-the-inner-life

My dad was an unhappy man. He used to complain about the slightest thing being out of place – a pen, the honeypot, his special knife with the fattened grip. By the time his health really started failing, his arthritis so bad he could no longer get out of bed, his condition became all he complained about. ‘Dorian,’ he said, one morning over breakfast, the grapefruit cut up indeed with his special knife, ‘I hate myself.’ He was 86 years old and, I felt, nearing the end of life, so I took it upon myself to help him die as well as he could, a kind of Ars moriendi for the old man. ‘But Dad,’ I said, for the first time in our 32-year relationship. ‘I love you.’ When that didn’t help, I sent him some Montaigne.

Michel Eyquem de Montaigne (1533-92) lived a good, long life for a man in early modern France. By all accounts, it was a happy one, at least if his Essais (1570-92) – rangy discourses on varied subjects from thumbs to cannibals to the nature of ‘experience’ itself – are anything to go by. His writings, autobiographical in nature but highly argumentative, have survived him as somewhat radical (for the time) self-experiments. ‘Thus, reader, I am myself the matter of my book,’ he opens, with a letter of warning about the 1,000-plus pages that follow: ‘you would be unreasonable to spend your leisure on so frivolous and vain a subject.’ Since I took my dad to be also involved in so vain and frivolous a subject – namely, himself (right down to the urinary tract diagrams he drew for me on paper napkins at the dinner table) – I figured they’d have a lot in common.

The passage I chose to hand him, from the essay ‘Of Solitude’, concerned Montaigne’s secret to happiness. It says, simply: these are the things we normally think will bring happiness; they’re wrong, here’s mine. ‘We should have wife, children, goods, and above all health, if we can,’ he writes; ‘but we must not bind ourselves to them so strongly that our happiness depends on them.’ In what’s become something of a trademark for his life philosophy he adds: ‘We must reserve a back shop all our own.’ A back shop – or in the original French, arriere-boutique. Of course, this is metaphor. Of course, my dad took it literally.

What is there left for us to learn from Montaigne on the subject of happiness? For one, that ‘back shop’ doesn’t mean the room behind your place of work. Increasingly confined to his bed, in the crummy 17th-floor apartment that doubled as his home office, my dad read these lines with an eyebrow raised. Granted, Montaigne himself penned them from a castle-tower eyrie, overlooking the vast estate of his château. He didn’t mean for us to take refuge there – this privileged perch was just where he did his writing (as I do mine now in the storage unit behind my house, a heavy wooden partition setting me off from the boxes and mess). No, the physical ‘back shop’ is just a writer’s den, and this misunderstanding has caused critics to huff about Montaigne’s solipsism, as if what he really said was: Go be alone and make great art. This does not lead to happiness, I assure you.

When my dad emailed back, misreading Montaigne in just this way, he nonetheless conceded that the passage I’d sent him was ‘thoughtful’. But not, he added ‘surprising’, as ‘Many writers nowadays speak of personal space, meditation, being alone at times, and so on.’ He went on to say how there was a difference between voluntary and involuntary solitude. ‘Many of us, as we age, become too much involved in that space.’ It’s not just the confinement but the loss of all able-bodied experience that they’re missing out on, and my dad (as ever) listed them: going to the market, dancing, seeing family and friends – precisely the things that Montaigne cautioned his readers not to count on for happiness.

In her book How to Live: Or a Life of Montaigne in One Question and Twenty Attempts at an Answer (2010), Sarah Bakewell acknowledges the temptation to read Montaigne as an advocate for a type of isolation (chosen or not), but she qualifies this, saying: ‘He is not writing about a selfish, introverted withdrawal from family life, so much as about the need to protect yourself from the pain that would come if you lost that family.’ It was after the death of his closest friend and confidante, Étienne de La Boétie, and then later of his father, that Montaigne retired to his private library. In Donald Frame’s translation, this period is marked by Montaigne’s fall ‘into a melancholic depression, to combat which he begins to write the first of his Essays’. The contemporary US writer and essayist Phillip Lopate ventures that, for Montaigne, ‘the reader took the place of La Boétie’. But how, exactly, did Montaigne’s attempts (the literal translation of essai) assuage grief?

Certainly, an unnamed interlocutor haunts the text, the kind we usually chalk up to self-talk. Talking to people who won’t talk back (or who can’t because they’re no longer with us) is a form of conversational intimacy we might read as an extension of Montaigne’s general affability. In life, Montaigne was known about town as a raconteur with an open-door policy for guests. Even Bakewell, who sums up his back shop as a form of ‘Stoic detachment’, notes that in another lasting dictum Montaigne cried: ‘Be convivial: live with others.’ If Montaigne’s back shop is meant to mend a broken heart, then it is not by avoiding future pain, but by coming into a different relation with it.

Montaigne was well aware that the promise of getting away from it all was a fool’s errand since, wherever you go, you take yourself with you: ‘It is not enough to have gotten away from the crowd,’ he writes, since ‘we must get away from the gregarious instincts that are inside us.’ Instead, to quote Albius Tibullus, one of the Latin poets he grew up with, ‘be to thyself a throng’. This is where I hoped my dad might take note: shut in with no one but himself for company, there might still be a chance for great companionship. ‘We have a soul that can be turned upon itself,’ writes Montaigne, ‘it has the means to attack and the means to defend, the means to receive and the means to give.’ Sadly, my dad didn’t see his own soul this way and, after falling into a depression of his own, he took his own life.

I wonder now if Montaigne’s back shop was less the writer’s saving grace, lifting him from the depths of despair, but not the act of writing from within it? ‘Here our ordinary conversation must be between us and ourselves,’ he writes – and I take it he means that the quality of the inner dialogue will determine the quality of the life.

Montaigne’s mental chatter had a buoyancy to it, as he bounced from one subject to the next, going with the current. What I couldn’t convey to my dad, evidently, was this lightness of attention, distilled in that most famous of Montaignisms: ‘Que sais-je?’ (What do I know?) In his celebratory portrait of Montaigne, Ralph Waldo Emerson in 1837 comments that: ‘His writing has no enthusiasms, no aspiration; contented, self-respecting, and keeping the middle of the road.’ Not taking life quite so seriously – the pursuit of happiness notwithstanding – might then be Montaigne’s key to dying well. After all, there might be no surer inner peace in one’s final days than not needing it so badly.

Dorian Rolston

This article was originally published at Aeon and has been republished under Creative Commons.

41 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!