myelomachronicles

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!

26 Interesting Days

~ Roger JG Albert

Bortozomib Blues

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

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

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

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

Lab Work

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

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

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

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.

23 When Death Comes Calling

~ Roger JG Albert ~ 11 Comments

Don’t worry. I haven’t gone completely morbid or so focussed on death I’m forgetting how to live. However, I’ve been fascinated my whole career on the overwhelming but often covert death denial we have built into so many of our institutions and which is at the core of much of our morality.

That’s one reason I was amused, yes, amused, when I came across this YouTube video of a long retired philosopher who in his 97th year of life, after a career writing about death and dying in an abstract sense often poo-pooing our personal fear of dying, come around and admit that he was scared. He was scared of dying. He’s dead now, but in this video we get a pretty good sense of what he was going through in the last few weeks of his life. It’s not about cancer. I figured I’d give you a bit of a break from that for one blog post.

So, Herbert Fingarette, author, teacher, husband of 70 years to the same woman (who died seven years earlier), devoted rationalist and philosopher (Stoic I expect), writes about death and dying in an almost flippant manner, virtually sniggering at the weakness of being fearful of death. Then, he’s ninety-seven years old and on his way out. He knows that, and now he’s scared. He still has time to be scared. His question is: “What is the meaning of all of this?” Well, that’s a legitimate question, one that Tolstoy asked himself about his life and work as he lay dying. Truth is, there is no meaning. No cosmic meaning that’s for sure.

I also wrote some (no books, mind you) about death and death denial from sociological, psychosocial, and anthropological points of view mainly through the work of Ernest Becker, the author of several books, the last one being entitled Escape from Evil. I do a detailed review of Escape from Evil in the early days of this blog. You can do a search for several posts on Becker by using the ‘search’ function on the right scrolling menu of this blog. Here’s an example:https://rogerjgalbert.com/2017/11/

One of my favourite BBC documentary presenters is Brian Cox who is an astrophysicist and has a beautifully produced series of documentaries on the cosmos, entropy, life and death. For him, everything, every structure comes into being using materials in the environment, grows, matures, then decays into its constituent parts and dies. Ocean floors are pushed up into mountains, sharp at first then eroded finally into plains and flatlands. Galaxies come and go. The whole universe is destined to die. For us, following Ernest Becker, death and disease are the twin evils of our world. Of course, we need death because we usually eat dead things. We need death to live. It’s when our own lives are at stake that things go messy in our heads. We don’t mind death at all and we’re quite willing to inflict it on anything we wish to shove down our gullets or we think might be a threat to our continued existence. The movies these days are full of death and destruction, but it’s always of the good kind, when threats to our existence are defeated. It’s a lot more complicated than I’m portraying it here. There’s a lot more explanation in the archives of this blog.

We don’t mind killing things, other animals, including humans. Some of us glory in the idea. As Becker points out, war is a venue for the creation of heroes. Some people trophy hunt to show how tough they are. So, it’s not death that bothers us so much, it’s death with insignificance.

I have no evidence of this, but it strikes me that most of us don’t think about death and dying on a regular basis, we have way too many other things to think about, like where the next rent payment is coming from or how can I confront my cheating husband or wife, or whether to get a latté or mocha on the way to work. Decisions, decisions. Way too many to be meditating on death. It’s true, the closer we get to dying the more immediate the threat, the more we sit up and take notice. Some of us deny the terminality of our own lives until our kidneys stop working in the last few hours of life. Some of us, if not most of us, push the thought of death and dying so deeply into our subconsciousness that it barely has time to surface even at the moment of death. “What, I’m dying? Nah, must be a mistake! Check my numbers again.”

Right now, I’m trying to conjure up my last moments on earth. It’s not coming easily. Sometimes I get scared, but mostly I’m curious about the process. I’ve been thinking of talking to a death doula to see how they approach coaching someone who’s dying. See, I can still intellectualize dying, but before I know it, I’ll be face to face with it and no denial will be possible anymore. Will I be like Herbert? I don’t think anyone of us knows for sure how it’s all going to do down. I certainly don’t, and it’s the uncertainty that is probably the most frightening thing of all.