oncologist

One Step Forward and Two Steps Back

~ Roger JG Albert ~ 2 Comments

Sometimes I think that it would be good if life were simpler. For me, it’s anything but simple. Maybe my expectations are too high. Maybe I’m not being realistic. Maybe if I relaxed a little, all would be better. Maybe. Yet, the complexity just seems to expand, to encompass everything, no matter what I do, or don’t do. 

I’ve been off chemo meds for about five weeks, and I have until the end of March before I go back on them. At least that’s the current plan. There was never a plan for long-term withdrawal from my chemo meds. I haven’t had my blood tested for a few weeks, and it will be another three weeks before I get tested again. I’m of two minds about that. It’s quite possible that the bloodwork will show that myeloma has again taken up full-blown residence in my blood and bone marrow. It may also be that it shows that I’m still okay. It’s always a crap shoot and somewhat tense for that reason. 

More concerning for me is the fact that since my withdrawal from hydromorphone I’ve been in a lot of pain. It hasn’t attenuated much at all. I’ve been able to walk a bit two or three times a week, but any walking I’ve done has been painful. I generally walk around two kilometres, and that takes me half an hour. Not a blistering pace. 

Because of the incessant pain I’m in I’ve had to backtrack and reconsider my decision to cease taking opioids. I took a slow release capsule this morning as a test and I have felt some relief. It may be that I’m dreaming in technicolour if I think that I can manage without pain meds. 

Speaking with my GP/oncologist last week was enlightening. He doesn’t think that the pain I’m having has anything to do with my B12 deficiency, opioid withdrawal or myeloma. He thinks it’s attributable to chronic pain, something I’ve experienced for decades. (I’m not sure I completely agree with him on that.) Thinking back over the past thirty years and it’s clear to me that I’ve had periods before I was diagnosed with myeloma or pernicious anemia when I’ve experienced extreme pain and other very strange symptoms like having a yeasty odour and having my skin welt up after drawing a dull object over it with not a lot of pressure.* In the mid-nineties I had a period of debilitating fatigue to the point where I could barely function. I was also depressed at that time, with good reason to be. 

The chronic pain that I’ve experienced throughout most of my life is associated as much as I can tell, with the consequences of surgeries I’ve had. The two main ones are a laminectomy (disc removal) and a nephrectomy (kidney removal). As well, I’ve had the odd accident on my bike and some running-related injuries. My neck has been a source of a lot of pain over the years brought on mainly by years of hunching over a computer terminal. I envy people who go through life with very little or no pain. There aren’t many of those in my family. I have siblings with MS and fibromyalgia. I have quite a few relatives with autoimmune diseases. It seems to run in the family. We’re also a long-lived bunch. That might be good, but it might not be so good too: all the more time to suffer from debilitating pain. 

The biggest and most distressing challenge I face right now is the weakness in my legs but I may get control over that with a low dose of hydromorphone and gabapentin. I need to move around. That’s a prerequisite for continuing to be able to move around. Being sedentary breeds inactivity and makes it harder and harder to get any exercise. Exercise hurts! Walking two kilometres brings on a lot of pain. Damn! 

And with the price of gas now, I think driving may be an even bigger pain in the ass than I’m feeling now in my ‘lower’ back. I feel that driving into Courtenay for a walk on the River Walkway is a bit frivolous when gas is $2 a litre. I can always walk around Cumberland for free. 

Tomorrow should be better for me in terms of pain. I expect I’ll walk a couple of kilometres tomorrow morning. The weather is supposed to be good. From Thursday on for at least a week it’s supposed to be rainy and cold. No reason not to walk, but it is less pleasant and I like pleasant these days. 

If you didn’t notice, and to end today’s musings, the title of this post works for some things, but not for life itself. Life never goes backwards, no matter how much we wish that it were so, no matter how many anti-ageing creams we use. 

My next post will be on why the penis and clitoris are such wondrous things and why they have so much in common. 

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*This is the strangest phenomenon. I would drag the handle of a kitchen knife over my arm and it would welt up for maybe three hours afterwards along the path of the draw. Has that ever happened to you? I’d like to know if you’ve ever experienced this. 

~ Roger JG Albert ~ 8 Comments

# 87. The Last Post in a Series.

Last Friday morning, we (Carolyn and I) had a meeting with my oncology consultant, Dr. Nicol Macpherson, at the BC Cancer Agency in Victoria. We meet with the oncologist in Victoria maybe three times a year. The rest of the time we have a local GP who specializes in cancer treatment. Our local GP oncologist is Dr. Bakshi. We’re quite happy with the service we get from the BCCA and from the local staff of nurses and Dr. Bakshi at the Cancer Care Centre at the Comox Valley Hospital. The meeting with Dr. Macpherson this morning was especially eventful. 

I knew that I was doing well with the chemotherapy and monoclonal antibody treatments I am getting. I started my current regime in mid-February of this year and the progress I made in a month was nothing short of stunning. We keep an eye on my frequent lab tests by logging into an Island Health website called MyHealth. On that site I get to see all the results of my lab tests, imaging results, and upcoming appointments. Obviously, we need to know what we’re looking at when we check out my blood serum profile including my paraprotein and Kappa Free Light Chain numbers which are of particular interest in my case. After some research and consultation, we now have a grip on what the lab results mean for my myeloma activity although the information is always incomplete and must be interpreted fully by someone who has better access than we do to the numbers. That someone is Dr. Macpherson in Victoria although Dr. Bakshi must also have access to my numbers, and my GP is probably copied on all the documentation coming from the hospital here and from Victoria. Now for the fun part:

So, Macpherson told us this past Friday morning that there is no trace of myeloma protein in my blood at the moment. No trace at all. He expects that that will be the case for the foreseeable future, years probably. 

We have been hoping for this result, but we had a bit of a setback late last year and early this year so we were doubtful that the zero myeloma protein in my blood would be an ongoing condition. It now appears that it is. The next few weeks will give us a definitive answer, but the situation looks very good. I have to keep reminding myself that myeloma is incurable but treatable. At the moment I’m in full remission. Inevitably the myeloma will make a comeback. We don’t know when, and that’s the frustrating part of this narrative. Still, we are in a good place right now and probably for some time to come. 

The situation with my cancer being resolved for the time being, I’ve had to rethink the focus of this blog. I have published well over four hundred posts but only eighty-seven addressing explicitly my experience with myeloma. Given the current situation I’ve decided to close the series of posts dedicated to myeloma and open up the blog for other topics and commentaries on current affairs, life and death. I started this blog in 2012, the year I retired. That’s quite some time. Maybe I’ll aim for a thousand posts. There’s no purpose in doing so but I can set up an arbitrary goal if I want. Whatever. 

Sometimes I’m tempted to shut the thing down completely but then I get the itch to write a commentary about current affairs, to get something off my chest, or just to post pictures of the beauty that surrounds me on our property here in Cumberland. We’re approaching the summer solstice. This time of year often brings unsettled weather and exponential growth in the garden which actually needs more heat and sun to ripen fruit and get the lilies to bloom. The lilies are coming up now, slowly, but soon they will colour the garden with splashes of red, yellow, orange, and white. The rhododendrons are still in bloom, at least some of them, but the dogwood and the wisteria have pretty much shed their blossoms and are moving on to create more branch and leaf structure. The weather prognosticators are suggesting that a warm, sunny trend is on the menu for next week. If that happens, we will again be able to sit out by the pond or on the deck next to the water feature there, drink tea and read. We will eat out on the deck again in warm comfort. 

Life is the weirdest thing, and I don’t mean just as it applies to humans. It seems a little perverse to me, actually. The whole thing does. The birth, growth, maturation, and then decay seem to be a waste of experience and a slap in the face to beauty which it prepares to annihilate in a short time in the last quarter of life. It celebrates renewal but only on the destruction of what went before. The death of one generation means life for the next one. For us humans the process of life is particularly insulting in that it promotes the growth and accumulation of knowledge, of piles of household goods, and property in general just as it prepares to shut it all down and make fodder out of it. Of what use is that? None that I can surmise. But, in any case, let’s not glorify usefulness. 

The concepts of use and purpose don’t apply to life or they apply completely to it. Death is necessary as a base for life. No death, no life. So, ultimately the purpose of death is to act as a basis for life. Life, in the spring, likes nothing more than a pile of shit or manure to drive new growth along. That may be true, but it doesn’t mean I have to like it. My death is not far off. According to the statistics, I have maybe five more years before I reach the average length of life in Canada for males. Given the success we’re having with chemotherapy and monoclonal antibodies I could just reach the average lifespan. Eventually, myeloma may well kill me, but whatever, something has to do the deed. I need to die, we all do, to make room for future life. Bring it on.

A picture containing tree, plant, flower, arranged Description automatically generated
A nice picture of white, red, and orange lilies to end with.

22 The Unrelenting Presence.

~ Roger JG Albert ~ 6 Comments

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)

AND…

“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.

20 Calm down!

~ Roger JG Albert ~ 2 Comments

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!

4 I got to ride in an ambulance!

~ Roger JG Albert ~ 4 Comments

No sirens or anything, but still. We drove to Victoria (I should say Carolyn drove to Victoria) last Wednesday for an appointment with an oncologist at the Victoria Cancer Clinic. Wednesday went well enough although I’m in severe pain and the stress is overwhelming. Despite my distress we had dinner at the hotel. That was great. The Inn at Laurel Point is a superb hotel and the staff is excellent.

On Thursday morning we got a cab (Carolyn wasn’t particularly interested in driving, parking, etc) to the Cancer Clinic which is right next to the Royal Jubilee Hospital. We waited for a bit then had a good appointment with the oncologist which lasted probably an hour and a bit.

After our appointment we decided to head into town to have lunch and do a little shopping. Big Mistake! Multiple Myeloma is not a forgiving disease and doing regular daily activities can be impossible. I was to find that out in spades. Instead of doing the logical thing and taking a cab back to the hotel I decided a walk would be good. Wrong! A walk is the last thing I needed. I was in severe pain by the time we got to the hotel. I lay down on the bed to see if I could dissipate the pain a bit and that seemed to work until I thought about getting up. Impossible! The pain was over the top, way over the top. Eventually I got out of bed by sliding off the end of it while in a critical state of pain. Well, a normal person might just have decided at that point to call an ambulance and get to the emergency department of the Royal Jubilee. Not me. I’m tougher than that, and way more stupid. So I took a schwack of T3s and went to bed. Hardly slept at all. We were supposed to drive home in the morning but that wasn’t going to happen. We called the oncology nurse and after a bit of discussion she told us to get an ambulance back to the hospital to get an MRI and to deal with the pain. So we called an ambulance and the paramedics came to our hotel room and got me on a gurney, etc., put me in an ambulance and took me to the emergency department. I think that will be the last time I let anyone talk me into going to emergency. I don’t blame the staff, they have their protocols, but the truth is I wasn’t there for a diagnosis. Nonetheless they took some blood (why, who knows) and had me sit in a waiting room with 60 or 70 other people. while I was in severe pain. Well, we were there for several hours. I got no pain meds for hours but finally got a CT scan, when what I needed was an MRI.

In any case, by the time I was in that black hole of an emergency department my pain was at a critical point so the ER doctor got me a hydromorphone drip and a prescription for hydromorphone. We got back into the truck but now had to stay another night because Carolyn can’t really drive after dark. Thankfully the Laurel Point Inn was able to accommodate us. I slept that night fully in the hands of my opioid angel. The hotel has a wheelchair which is good because by now I’m unable to walk because of the pain. In the morning we go downstairs, have some breakfast and then head for home. I knew that by the time I got home I’d be a basket case. More hydromorphone. Slept (I suppose we can call it that) when we got home. Now I sit here awaiting further instructions. I may have to get a wheelchair if I have to go any distance. The oncologist promises pain relief after I start chemo. I’m looking forward to that.

That’s it for today. I’m beat!

3 What? I’m giddy about seeing an oncologist?

~ Roger JG Albert ~ 4 Comments

Well, giddy might not be exactly the correct word to use here but it’s close. I’ve known for a month or so now that I have multiple myeloma, an incurable bone marrow cancer, but I have also been told that it’s treatable and some people live for some years after their diagnosis. But I’m not sure about anything yet because I have yet to see an oncologist. That changed yesterday, at least the anticipation part.

Yesterday, around 1 PM I got a call from the BC Cancer Agency in Victoria, telling me that I have an appointment with an oncologist at the clinic on Thursday, the 31st of October, Halloween morning, at 10:30 AM. I have no idea what to expect because I have no idea at what stage my cancer is at nor what treatment options there are. Oh, I can make up stories based on Dr. Google research, but that’s a futile pursuit. This disease is idiopathic. No two patients are alike. I guess that’s true for most cancers. There are commonalities and there are individualities. The only reason they can be treated at all is because of the commonalities. Without pathological patterns no illness could be treated. Still, the idiopathic aspects of this disease make it hard to compare experiences with others facing the same disease. We can commiserate, but that’s about as far as it goes. That said, there is comfort in commiseration.

So, this morning at 7:45 I attended the medical lab in Cumberland so they could take a dozen vials of blood and some urine (boy, did I have to pee when I got there) in anticipation of my appointment with the oncologist, but also with a nephrologist in Nanaimo on November 7th. On Saturday I have a CT scan and on Sunday I do a twenty-four hour urine collection for the nephrologist. I might already have told you this, but I am taking prednisone now and I’ve had an infusion of some drug the name of which I forget. So, in effect, my treatment has already started. I can’t wait to see what the oncologist has in store for me come Halloween morning.