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.