Carolyn and I have just finished reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. The author, an oncologist and Renaissance man, who won a Pulitzer Prize for non-fiction for this work in 2011, masterfully addresses the war on cancer over the past few centuries or so, but with a special focus on more recent events and ‘successes’ relating to specific cancers and new treatments. Cancer, as the books so often argue, is not one disease but lots of different diseases. They all have one thing in common, though: pathological mitosis.
I’m not going to review the book today. I will, though, sometime soon. I’m kind of bummed out right now and not really in the mood to write a long blog post. I took my chemo meds again today. That’s always a fun time, but I’m still confused about just what accounts for how I’m feeling. Sometimes we call these feelings ‘symptoms’ but I don’t like that word much. I’m not sure why. For instance, this afternoon I felt exhausted, and lightheaded, somewhat dizzy too so I went to bed for a nap. As I lay there my body was tingling all over. Is that a feeling or a symptom? If it’s a symptom, is it a symptom of my myeloma, the chemo meds or something else? It’s still tingly, but not as intensively as this afternoon.
I’m bummed, but I should be celebrating, I guess. I had a five minute telehealth conference with my Victoria-based oncologist yesterday morning that’s left me feeling a little empty. For one thing, although he called me by name when we made screen connection (It’s like Skype on steroids), he was not prepared in the slightest for the interview. He asked me how I was doing on a chemo cocktail he had withdrawn me from a few weeks ago. Then he asked me what he could do for me. Well, shit. He then got so focussed on the computer screen he was looking at with my charts all over it that I might as well have not been there. So, I asked him about my lab results. Yes, he said, everything is going very well. The drugs are working. Reason to celebrate, right? Yes, I suppose, but then he says that I had better get used to the shitty quality of life I have because that’s my future. Even if I go into remission. Well, slap me in the back of the head! It wasn’t that long ago that he sat before me and told me I’d regain some good quality of life in remission. Maybe he was having a bad day. Now I was having a bad day too. I felt that this guy needs a talking to about compassion. He rebuffed any attempt I made at personal conversation. He was cold and completely detached. Maybe he was having a bad day but maybe not. Maybe he’s like this most of the time. Then I thought, maybe my expectations are too high. Maybe I should think of him as a consultant, more than as a doctor treating me like my GP would. After all, I see him for five minutes every four months. So, whatever, I’m still bummed out. Distractions like writing, reading, and watching YouTube videos are good for me, but I can’t be distracted a hundred percent of the time. Any break, any crack in my distractions and the dark light of myeloma reminds me in no uncertain terms of my mortality.
Mukherjee is so informative. I learned a lot reading his book. I’m also reading a book on Medieval medicine and even a thousand years ago, ‘doctors’ recognized cancer for the killer that it is, but they looked for the causes in ‘black bile’ and other humours gone bad. Towards the end of his book Mukherjee gets real for me. It’s all fine and dandy to ‘know’ about cancer, to study it, to follow developments in its treatment, but now, cancer has me up close with its unrelenting presence. I leave you with two quotations from Mukherjee’s book. I am these quotations.
“The poet Jason Shinder wrote, “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)
“Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)Read the book
Enough for now. Maybe I’ll have more gumption tomorrow.
6 thoughts on “22 The Unrelenting Presence.”
Wow, Roger, what a roller coaster. So many questions. I appreciate your candidness regarding your illness. I too, think of it as an illness and not a disease. Also, I feel your writing is right on the mark and will help you in your journey towards wellness
Thank you, Ed. Myeloma is incurable and my oncologist this week gave me five years tops. I think he doesn’t know me. We’ll see about that. I’m really curious as to what remission might look like. My oncologist says now that my quality of life won’t improve. We’ll see about that.
Thank you for sharing your story with us and so many others. The authors you quote have helped enormously in our comprehension of your state of mind and physical well being. The intimacy and honesty of your writing allows the reader to accompany you even from afar. Know that Annette and I remain two woodpeckers chiseling away on that feeling that surrounds you.
Danny and Annette
Sent from my iPhone
Thanks, Danny. I’m determined to see a good long remission and maybe later get enrolled in some drug trial or other. There are trials happening all the time all over the world. I’m optimistic, always, about myeloma, but my mortality intrigues me. I’m writing about that in my next blog post.
So, the big day is tomorrow! I would have loved to be there. Wow. I had a look at the cathedral on google earth. It’s pretty modern! I expected an old style gothic thing, but no way. It’s very classical in its lines, but very cool and big! It’s not every day one gets to get married in a cathedral. The Novais name must have some weight in southern Brazil.
Have a great day. I really look forward to more pictures too. I haven’t seen any of Aline’s family although you may well have posted some.
He was having a bad day and I haven`t met too many doctors that can really connect with their patients. Continue to hold your head high, you`re doing great!
Thanks, ‘Mama’. BTW, you’re not the only friend I have that goes by the handle ‘Mama Bear.’
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