Calm down!

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!

Fuck cancer!

Fuck Cancer mugs

[WARNING: this post contains references to visualizations some might consider offensive, and I regress to being a potty-mouth. Be forewarned.]

I’m not feeling particularly creative, effusive or positive today. In fact, I’m feeling hard done by, angry and unhappy. Hence the title of this post. In fact, I’m feeling fucking crappy, as crappy as ever, or even more so, because for the last three weeks or so I’ve had a cold to compound the effects of my myeloma and the chemo meds I’m taking. Most of the time all I’ve been able to do is sleep, or stare out the windows.

We just came back from the hospital an hour or so ago. Carolyn had to shovel huge piles of snow blocking our driveway and covering our truck just to get us there. Carolyn is my warrior! At the hospital, I got an injection of bortezomib (a proteasome inhibitor) into my abdomen and an infusion of zoledronic acid (a bone strengthening drug that has not-so-fun consequences for my kidney). They gave me 4 grams of zoledronic acid rather than the 3.5 I got last time. I have no idea why. They have a complex formula for deciding how much to give me including my weight and my lab results. Now, I’m just waiting for the chemo meds to kick the shit out of me as they surely will. At least dexamethasone gives me a bit of a boost of energy allowing me to carve a few words onto this ‘page’ out of my weary brain. The sculpture I’m carving I don’t feel is particularly elegant or fine, but my tools are dull so it’s what you get.

Do you like the mugs? Carolyn had them made by a very talented potter in the Valley who had previously made a set of mugs we bought from her that resemble these a lot except for the swear words.

Yeah, fuck cancer! I’m so sick and tired of being sick and tired! And now, to compound my shit, I have to worry about peripheral neuropathy. [I have complained about this before, but read about it again for fun.] I’ve had peripheral neuropathy for some time, many years actually. Peripheral neuropathy (PN) is a condition where the peripheral body parts, arms and legs to be precise, get to feeling numb, painful, and full of weird sensations like having bugs crawling all over them (something I’m feeling a lot at the moment). One of the side effects of the cocktail of chemo meds I’m taking is peripheral neuropathy. Left untreated it can lead to immobility, loss of sensation and life in a wheelchair. This is one of the nasty side effects of my meds, one that has forced a friend of mine who also has myeloma off this particular cocktail that’s often referred to as CyBorD. I’ve written about this before. I have to keep a close watch to determine whether or not the symptoms of PN are getting worse or not. It’s just one more thing to keep my mind occupied with my illness. Fuck cancer!

Did I say Fuck Cancer? Right, I did. And I mean it. I’m not sure what else I would prefer to die from, but cancer is not the companion I would have wished for on my way to the crematorium. Maybe a six-ton weight falling from the sky onto my head would be preferable, I don’t know. I have no way to assess the quality of various means of dying nor the means of communicating the results of any research I might do on the subject to you after the fact.

I may have already written about this…remember that brain fog is a classic side effect of anemia and myeloma, repetitiousness and forgetfulness probably are too… I read somewhere that an artist was asked if he wanted to be cremated or buried after he died. Instead of answering as you or I might he replied: “Surprise me!” Yeah, that’s the way I feel about it. I won’t be around to give a shit one way or another, but I have said I want to be cremated. I have had too many nasty dreams about being buried to want that as an option. Now, though, I’m starting to have moments when I visualize the crematorium attendant pushing my body into the furnace and my skin starting to cook like a pig on a spit as the fire gets hotter and hotter. I know, it’s gross and morbid. Sorry for bringing it up.

So, to change the subject, I’ve had a few moments of lucidity lately between bouts of feeling really nasty because of this cold, and I’m reading (in bed) about my ancestors here in Canada. My family goes back a long way as immigrants to Canada, back to early in the 18th Century actually on both my maternal and paternal sides. I’m finding out that my Norman ancestors called LeGuerrier (the warrior in French) were very likely actual warriors. A thousand years ago the Normans were highly trained and fierce warriors. They not only conquered England in 1066, but (I’ve just read) also became rulers in Sicily after they were invited there to help deal with an enemy. According to a book I’m reading they were often called on as mercenaries. One of the Norman rulers in Sicily was called Roger. His son Roger II took over after Roger I died and he was not known for his tender generosity. Roger that! In any case, the first Leguerrier in Canada can be traced back to 1748. He came earlier than that, but that date is the first mention of him in ‘the books’. He died a fairly old man. Infant mortality was very common then but so was death at any age. From what I’ve been reading living to reproductive age almost seems to have been the exception rather than the rule. These days I’m thinking about my ancestors, their lives and their deaths, and my place in the lineage. My grandpa Leguerrier died at the age of 76 in 1975 from stomach cancer if I remember correctly. My father died in 2007 at 96 years of age. We all come and go. Some of us live longer that others of the same generation but in the case of my grandpa Leguerrier and my father who were only fourteen years apart in age, I think I prefer to follow my grandpa’s lead because my father died after years of very poor quality of life, unable to feed himself because his hands were so distorted by arthritis. He was deaf, had been for years, and he was either in bed or in a wheelchair. To make matters worse, my mother had severe dementia and didn’t even recognize him on his deathbed. She was heard to point to him and say: “Who is that old man in the bed there anyway?” My mother died two years ago at 94 years of age. I can’t imagine she knew she was dying at the time. I’m not sure she knew that she was alive. Hey, wait a minute…

Looking in the Mirror.

When I look in the mirror I see an old man. I don’t see an old man with cancer. I just see an old man with a white beard, not much hair, and wrinkly skin. Melanoma (skin cancer) often leaves visible, sometimes unsightly and disfiguring lesions. I don’t have melanoma, although my father did. No, I have myeloma (bone marrow cancer) and its damage is all done on the inside, invisibly. So, I guess I can keep expecting people who see me say: “Wow, you’re looking good!” I guess I DO look good! Now, the last thing I want is to discourage people from telling me how good I look, so keep it up! However, the invisibility of my condition is deceiving. I remember when I was a kid my friends and I used to work on our cars. That was still possible when I was a kid. Often we’d stand around looking into the engine compartment (often of my 1956 Pontiac four-door hardtop) wondering what could possibly be wrong as if just staring at the engine would give us some kind of clue. The engine was always sparkly clean and there was nothing obviously gone awry. If I had money by some quirk of circumstance I might take the car to a mechanic. If not, we might borrow my dad’s tools and start taking things apart. That usually ended up badly. Yes, the most undesirable conditions in life are often on the inside, impossible to see or diagnose by just looking at the person or car in question. I find it best to consult mechanics when our car shows signs of disfunction. I find it best to consult medical specialists for treatment related to my body. I guess I could try to treat myself using any number of the ‘cures’ available on Dr. Google, but I would like to live a while longer, thanks. Besides, I’m not that desperate.

Speaking of medical specialists, we saw my local oncologist today. I see him every five weeks. The result of our visit is that I will carry on with a second course of chemotherapy. We’ll evaluate how well it went in five weeks. My first course of treatment seems to have gone as well as could be expected. The little excavator in my bone marrow is slowly running out of gas and my red blood cell garden is growing again. I’m still exhausted and that won’t change for some time yet, but things are certainly going in the right direction for now. I think I just might be a model patient. So, where does this all leave me?

Well, I may be on my way towards remission. If and when I do go into remission, and that’s by no means guaranteed at this point, that would buy me some time. By that I mean that I may have a few years more to live, though inevitably, either the myeloma will kill me or some other condition will. I won’t be walking away from this situation, brush the dust from my sleeves and carry on. No, I’m on a one way street. So are you, of course, but I can see that damned barrier at the end of the street. I’m hoping that you’re still far enough away from it that you can live in blissful denial for a while longer. I don’t have that luxury. So now what do I do with my life?

That question came up in a recent Facebook thread, albeit expressed in a different way, but with the same effect, I believe. The question comes down to this: If you knew that you had a given amount of time left to live (six months, two years, whatever), what would you do with your time? Would you to be seized by an overwhelming sense of urgency? Would you be determined to cram as much activity and experience into your remaining time as possible? Or would you curl up in a fetal position in a corner of your bedroom quivering and whimpering while you await your inevitable demise? If you have the money and the energy you might want to get out there and travel the world. If you have a spouse, that might complicate things more or less because they may not want the same things you do and may not want to get caught up in your sense of urgency. The last thing you need when facing terminal cancer is marital discord. I think there’s a lot to be said for just carrying on with life as before.

If you have the energy and the money then good on ya. If you travelled a lot before your diagnosis then travel after. Your eventual energy deficits will tell you when to stop. If you were fairly sedentary, more into being at home and puttering around the yard, then that would be something you might want to continue doing. The stress of travel may not be that good for you. Looking around the Cancer Centre at the North Island Hospital this morning I didn’t see a lot of people with obvious enough vigour to engage in a lot of physical activity. In any case, back to my situation.

My exhaustion prevents me from doing much in the way of physical activity. If I do go for a walk I pay for it later. Travelling is impossible. At one point I thought it might be possible, say, to take a direct flight to Puerto Vallarta back and forth from Comox, but there are a number of contingencies that make that next to impossible that have more to do with arthritis and disk degeneration than cancer. Besides, I take chemo drugs once a week orally but also by injection at the hospital. For three or four days after I take my meds I feel crappy, really crappy so the chances of enjoying myself on a beach somewhere are slim to none.

So what do I want to do, and what do I actually do? Well, I want to work on our canoe, finish some paintings, do odd jobs around the property and visit family and friends in Vancouver and further afield. What I actually do is sit and lie down a lot. As I sit and lie down, I read, and sometimes I even write. At the moment I’m reading social history around the Middle Ages and doing a bit of research on my family roots in Normandy. That’s something I would have done anyway, but I do miss working in my shop and studio and going for long walks with Carolyn and our imaginary dog. My oncologist thinks I will regain my energy, at least as much as an old man can expect. If so, that would be great. I’d love to get back to canoeing, camping and puttering.

When I get closer to dying I will know it, and I expect I will have time to think about it, but there really isn’t much thinking that is productive about dying, at least not for me. I’ll know when it’s time for palliative care. I don’t want to live as long as the oncologists might want to keep me alive. I’ll make the decision when the time comes. I don’t think it will be a really hard decision. I know that beginnings are impossible without endings. My ending is a lot closer now than my beginning! That’s fine. Frankly, I’m much more concerned with my family than I am with myself. They are the ones left behind to mourn. But both of my parents are dead and we got on with life after their deaths. My family will do the same when I’m gone. That’s what we do as humans. Like it or not, accept it or not, rage against it or cower in a dark corner, the end result is the same. Don’t sweat it.

Welcome to CancerLand* AND Happy Birthday to me!

Well, another festive season is in the books. This one was no different than many in the past with family, food, and drink (in moderation, of course) along with the requisite tree and lights. This year, however, the family arrived on the weekend prior to Christmas and stayed much longer than usual. That’s because our daughters, their husbands and children (one of our daughters carries the full responsibility for the production of our three grandchildren) wanted to stick around to spend some time with us. I love that they wanted to be with their sick old dad. They are such a delight to have around and I was very sad to see them go back home to Vancouver.

Wow, has my life ever changed over the past few months. I was diagnosed with multiple myeloma in early October, 2019, and since then I’ve been brought slowly yet inexorably into CancerLand. There’s no doubt that I had multiple myeloma long before the official diagnosis. The symptoms were clear in hindsight. It’s probably been well over five years. But it’s been only since November, really, that I’ve gotten my passport to CancerLand. I’m fully a resident now, brought into the institutional fold. That means frequent visits to the lab and to the hospital with calls to oncology nurses interspersed. I mean, I have a diagnosis! I’m legit! I have my badge and my pass to the ER.ª  I’m not just another whiny patient going to see my doctor to complain about being tired. I’m a CANCER PATIENT!

Speaking of being a cancer patient, I’ve now completed my first course of chemotherapy. It lasted about a month. My stomach is bruised from subcutaneous injections of bortozemib and my brain is bruised by weekly oral doses of cyclophosphamide and dexamethasone as well as zoledronic acid infusions once a month. I’m subject to a true cocktail of poison. Oh well. I used to drink more scotch than was probably good for me on occasion and people sometimes refer to alcohol as poison so, there ya go. Poison for poison.

Now we wait. We wait for the results of lab tests on Monday and what the oncologist will tell us on Wednesday based on those results. Will I be continuing with this same cocktail? Are the numbers going in the right direction? Can I realistically expect remission in the next few months? What? What? What?

Tomorrow is my seventy-third birthday. That means I start working on my seventy-fourth year tomorrow. For a guy who thought at twenty years old that he’d never live to be twenty-six, I’ve done pretty well. I can’t complain about my life. I must say, though, that there are a few things I might do differently if I had to do them over again, but I don’t dwell on those things anymore. I don’t have time. I didn’t have time when I was twenty-six either, but I didn’t know that back then. Time has passed so quickly, it’s frightening. If I had been able to really understand when I was twenty years old how in the blink of an eye I would be seventy-three I might have taken some things more seriously and dismissed other things as unimportant. But that’s the way it goes. There may be some twenty year olds out there who understand how fleeting life is, but I haven’t met them. Trying to convince them of that fact is not going to be very fruitful so meh…

I haven’t put together a New Year’s resolution. Should I? Maybe I can resolve to stay alive this year. Is that good enough? I’ve realized that in my state of being, committing to a long-term project to save the world is probably overly optimistic, but a resolution to stay alive in 2020 is reasonable, I think. I just might be able to see it through too. Wish me luck!

_________________________________________________________________

*”Welcome to Cancerland.” (from “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich). The title of this post is taken from this book. Ehrenreich uses this title as an introduction to the way she became medicalized after having been diagnosed with breast cancer. Start reading it for free: http://a.co/3h6SgyT

ª I do have a pass to the ER. I have a letter of introduction to the ER staff from the BC Cancer Centre telling them that if I show up to the ER they have a number of tests to do stat! If my temperature goes over 38˚ C, I need to get myself to the hospital ER for a possible antibiotic infusion. An elevated temperature indicates an infection of some kind, something I don’t need right now.

I meditate on my last breath.

Yesterday afternoon Carolyn tucked me into bed. The zoledronic acid infusion I got Thursday at the hospital has left me feeling like I have a nasty flu combined with a smashing hangover. I fell asleep almost immediately but when I woke up I could hear the rain beating on our metal roof. I love that sound. Today, the dexamethasone is kicking in and it’s leaving me in a state of nervous fibrillation. I’ve never done speed, but I expect the sensation must be something like that. Now is a good time to write because I have this bizarre energy that needs an outlet. However, the dex gives me the shakes making it difficult to keep my fingers singly on the keys of my computer.

So, getting back to yesterday afternoon. Like I said I slept for some time and woke to the sound of rain pounding the metal roof. I just lay there. I find that lying in bed staring at the ceiling is not a bad way to pass the time. I could never do that before. I had the work ethic really bad when I was still gainfully employed and long after truth be told. Now, my body has taken charge of my reluctant mind and has forced me to sit still, to lie down and not feel guilty about it. Cancer has its upsides I guess, but I’m not sure that I fully subscribe to its methods. One thing for sure: There is no normal in my life anymore: sleep times vary, meals are still on schedule as are the ritual pill taking, but I can’t count on feeling the same way during each new cycle of chemotherapy that I felt on the previous one. Dex is predictable but the intensity of its effect varies. I only have to take it one more time on this course of chemo lasting until January. I start taking it again in late January when I start my second course of chemo with my fifth cycle. A course of chemo lasts approximately four weeks, a cycle, one week. At least that’s the pattern now. But I digress.

I’m lying on my bed focussed on the cedar beam that crosses the ceiling in the middle of our bedroom, light pouring in from the three windows just behind me at the head of the bed. I close my eyes and think about death. Well, more about dying than death, actually. It’s the process of dying that is absorbing me, not death itself which for too long we’ve considered the opposite of life. Dying is another thing altogether. Dying is the separation of consciousness and body. Consciousness in my estimation comes to an end at the point of death but my body, this collection of matter brought together by processes millions of years old, will immediately begin to become unglued. It loses its integrity as a collection of cells and begins to decompose, that is, to lose its composition.

I don’t have to tell you this. It’s hard to live for any length of time without coming across at least one death in the family, among friends, or by reading the news or obituaries on the local papers. We know about death although we don’t quite know what to make of it or how it pertains to us. It’s strange that for most of us we take for granted that ‘we’ don’t exist before our conception and birth and that ‘we’ become ‘we’ by a combination of hereditary traits, learned behaviour, and environmental factors. ‘We’ or ‘I’ are constructs. We are not born fully operational. We become ‘I’ over time, slowly developing personality traits, habits, and idiosycracies that define us as unique individuals. But we resist very strenuously the idea that if we come we must also go. But I digress again!

So, I’m back in my bedroom, lying on my back on my bed in that state of half sleep, very relaxed and I meditate. I meditate on my last breath. I’m thinking that dying is not much different than living. When we fall asleep and lose consciousness we have no idea whether we will awaken or not, we just take if for granted that we will. I’ve had two brothers-in-law die this past year. One died during the night in bed next to my sister. We say he died in his sleep. True enough. He wasn’t conscious when he took his last breath. Neither was my mother who died nearly two years ago, but she had demential and was so hopped up on morphine that I can’t say she died in her sleep. My sisters were there at the moment of her death. I missed it by a few hours. I was in pretty bad shape myself two years ago with symptoms on myeloma that went undiagnosed at the time. I was perennially exhausted, in a great deal of pain, and I couldn’t stand the vigil as my family surrounded my mom’s death bed waiting for her to take her last breath. I prefer to think of my dying as just another falling asleep kind of experience. My last one of course, but still.

Needless to say, there are only one or two ways of being born that I know of, but millions of ways to die. I like to think that my last breath will be in the comfort of home or at least in a hospice, somewhere nice. Many, many millions of people worldwide don’t die under such benign circumstances. Violent death is common. Five thousand Canadians die in vehicle crashes a year, fifty thousand Americans meet the same fate. I don’t fancy that as a way of dying, but if it’s quick, maybe. I can’t imagine being hacked to death with a machete after watching my family meet the same fate in 1994 Rwanda, or being shot by a stray bullet in Aleppo leaving me wounded and watching the blood spill out of me. No, give me a peaceful, quiet place to die.

I’ve been diagnosed with an incurable cancer but I’m told that it’s more like a chronic treatable condition than a CANCER that kills fast and unannounced. I’ve got some time to think about my last breath. I’m not sure if that’s good or bad. Certainly, I’ll roll with it. I remember clearly when I was a kid of twenty or so. I had a fairly serious back injury while working at a sawmill on Lulu Island and I needed back surgery to remove a disk in the lumbar area of my back. I was a kid in search of meaning in my life, not such an unusual thing. I remember lying in my hospital bed after the surgery, hanging over the edge puking my guts out and thinking to myself. I can milk this for everything it’s worth. I could stay on Compensation for a long time then go on disability or something along those lines. Or I could get out of the hospital and use this time to get my shit together. And that’s what I did. I got my shit together. I enrolled in the liberal arts program at Douglas College in New Westminster and never looked back. My injury allowed me time to think about my future without the pressure of work. That was luxurious, and it worked.

Now, I don’t need to get my shit together. It’s been together for a few decades and I’m happy with my shit. My encounter with cancer, in a way similar to my experience with my back surgery, is giving me time to think about my last breath, but to also remember that every breath I take until my last one is worth paying attention to and celebrating. Whatever I do until I take my last breath is not so important. Of course, I can’t help but do something and I will do things that have always mattered to me. It’s impossible to do nothing and still be alive. Even lying on the couch ‘doing nothing’ is doing something. Whatever I do will be the right thing at the time because it will be what I do. In any case it won’t matter one iota after I’m dead because ‘I’ won’t be around to care or experience regret or any other sentiment.

Access to medical records

It is shocking to read on the CBC News today that LifeLabs has been hacked with an ensuing leak of information on 15 million LifeLabs customers including email addresses, passwords, medical records, et cetera. This is not good news. LifeLabs is a private medical laboratory business that has provided employment for members of my family and which is reputable, and generally reliable. It’s seriously unfortunate that the breach of information has occurred but it’s obvious (if implied) from the news source that it was a case of cyber blackmail, something that can easily happen to any company.

I had LifeLabs online access to my medical records years ago but in the last few years I’ve used VIHA (Island Health) labs exclusively, mostly the lab in Cumberland. Very convenient. Last time we were there (on Monday morning) the tech turned us on to MyHealth which is a new (to us anyway) service to allow patients access to our own medical records including lab and imaging results. This service is equivalent to the service offered by LifeLabs. It’s very comprehensive and I love it. We were able to access online records of our Monday morning Cumberland lab visit by early in the afternoon! Spiffy! So, I have an appointment with my GP tomorrow and I’ll already have looked at all my numbers and will be able to refer to them intelligently with my doctor. Carolyn and I have done a fair bit of research on myeloma, my bone marrow cancer, and understand what the numbers mean to some extent. Because I have only one kidney, the creatinine levels in my blood are of particular interest to us. They measure kidney function, something that can be impaired by myeloma but also by the chemo drugs I’m taking. My numbers show that my kidney is almost functioning normally again! Have a look at the graph below.

For an old researcher like me this is exciting, especially since it’s about my own blood work! Referring to the graph, you’ll see that on January 25th 2017, my creatinine level was 106 umol/L (which means micromoles per litre). That is above the reference range (60-100 mol/L), but not terribly so. Now see what happened in April 2018. There was a slight jump in my creatinine levels, but that was just the start of things going really wonky. By May of 2019 my creatinine levels began to spike up. In late September and during October my creatinine levels were all over the map. I think the radical drop from 134 to 103 umol/L from October 25th to the 29th was very likely because of a prednisone infusion on October 26th. On December 2nd, my creatinine levels were at 137 umol/L and by two days ago on Monday had dropped to 110 umol/L, almost back to normal.

This graph only goes back three years. If it went back further you’d find other times when I had spikes in my creatinine levels, not surprising since I lost my left kidney to cancer in 2002. For instance, in 2008 I went in for a blood test (not shown on the graph) and my creatinine levels were 114 umol/L, (within the reference range which at that time was 70-120 umol/L and not the 60-100 umol/L that it is now. Why the reference range changed, I have no idea). That probably wasn’t a spike, but it shows that my creatinine levels were generally above the reference range or very near it.

What I find really interesting about this graph is that I seem to be able to see immediately the effects of certain treatments on things like creatinine levels. I’m now definitely in a better position to ask the right questions of my medical team.

I’m sure medical professionals may have some doubts about to value of making this kind of information available to patients. I’m sure some patients might just go off the rails if they see lab results in MyHealth that are in red (indicating something abnormal is going on). Overall, I think this is a good move on the part of VIHA but I’d sure like to hear what the pros have to say about it.

In the meantime, if you’re a LifeLabs customer, good luck. There are resources you can access if you feel your medical records may be compromised. Check out the news reports on this. It’s all over the CBC and Facebook.

Now we wait.

I started the second course of chemotherapy using the new cocktail of drugs called CyBorD: cyclophosphamide, bortezomib and dexamethasone. Ya just got to be impressed by that line-up of fancy Latin names for that nasty little prickly army of toxic chemicals that we have to wear gloves to handle and that I gleefully (albeit not without some trepidation) ingest every week. Next week they’ll also infuse me with zoledronic acid, a drug that is supposed to strengthen bones. So far, so good. I may have said this before, but I will reiterate that the staff at the Cancer Centre at the hospital here in the Comox Valley is really fine. I feel that I’m being looked after. I have a person I can reach on the phone if I have any issues or questions and they’ve given me a letter to take to the Emergency Department if for any reason I should need to go there.

We won’t know for a while yet what effects the chemo drugs are having on my myeloma. It’s a waiting game, but I suppose the whole process is pretty much of a waiting game. There are so many questions and very few answers at the moment. In my last post I told you that I was going to see an orthopaedic surgeon in Campbell River. Well, we drove up to CR on Monday (the 9th) to his clinic in Willow Point. His name is Dr. Deke Botsford and he is a specialist in hip and joint replacement surgery, but he’s also capable of dealing with the issue I have which is the lesions in my femurs. To be precise, the lesions are in what’s called the distal part of the femur which is the part of the femur closest to the knee. He told us that that was an unusual site for myeloma lytic lesions to form but he also said that there were treatment possibilities. So, the lytic lesions are the result of paraproteins in my blood excavating my bone marrow thereby weakening my bone and getting in the way of the creation of hemoglobin. The excavations are called lesions. It may be that the chemotherapy treatments I’m on will arrest the growth of these lesions but then again maybe not. Botsford could drive a rod up my femur from my knee all the way to my hip joint so as to stabilize the bone and keep pain at bay. Or, he figured I might benefit from radiation therapy. I expect my oncologist will want to wait for a while to see what the chemotherapy treatments are doing before launching into another therapy. I see Botsford again in early February at the hospital in Campbell River to get an x-ray of my right femur and to assess the state of affairs in my bones. It seems that my right leg especially is weakened by the paraprotein excavations, but it is not likely to spontaneously break. It could break if I fell, for instance, or banged it a little too hard on a door jamb or something. I’ll try hard to see that doesn’t happen.

As far as pain goes, I’m dealing with it. I’ve reduced my intake of hydromorphone, my main opioid line of defence, but things seem stable enough. The zoledronic acid has a nasty side effect in that it can create elevated levels of pain in the back so I won’t be trying to wean myself off of hydromorphone anytime soon. Besides, if I do back off a bit with the hydromorphone, something I’ve tried a couple of times, I can feel pain creeping back into my ribs and back so I don’t think I want that to happen.

I have been going out a lot, of course, to the lab, the hospital and to doctors’ offices, but late yesterday afternoon Carolyn and I went to the Cumberland Brewing Company to meet with some friends. That’s the first social outing I’ve been on in three months or so. It was taxing, and today I’m exhausted, but it was also good to get out amongst friends and sip on a bitter. Even though I’m very tired I still managed a visit from a good friend and former student now living in Nanaimo. We drank tea out of mugs she made and delivered to us three weeks ago. Everyone has been so kind and generous. Gifts of food and goodies keep coming. I really feel the love.