This is no fun at all.

Well, this is no fun at all.

I’m not silly enough to believe that a life with myeloma would be fun, but I’m kind of disappointed that it’s been such an unmitigated downer. I am, I can now see, destined to drag this goddamned disease with me into the grave. Come on, I knew that! Still, a bit of a break now and then would be welcome. Is that too much to ask?

Actually, I think the nastiness I’m experiencing in spades right now stems mostly from the chemo meds rather than from the myeloma itself. This past week would support my idea that the meds are as bad as the disease at the moment for making me feel tired, dizzy, and in pain.

I went to the hospital on Thursday for my bortezomib shot after taking all the rest of my chemo drugs in the early morning. I expect Thursdays to be non-days, and this one was certainly that. A non-day is one when I can’t gather enough strength to do much of anything. However, Friday and Saturday also turned out to be non-days and Sunday wasn’t much better.

I felt a little beaten down. Of course, I should have expected it because my local oncology GP did warn me that they were going to ‘challenge’ me with my chemo med doses. No more mamby-pamby half doses for me! I was to get the full meal deal! Yes, indeed. Silly me.

Then I figured that maybe I needed a good dose of positive thinking to counteract all of these drugs. Maybe all I needed was a little endorphin fix. After all, I used to teach positive thinking on the Knowledge Network back in the ‘good ol’ days’ of 1986 to 1992. I used to teach as Ehrenreich points out “that on many levels, individual and social, it is good to be ‘positive,’ certainly better than being withdrawn, aggrieved, or chronically sad.”*

The problem is I’ve learned a few things since the early 1990s, not the least of which are the limitations of positive thinking. The American Cancer Society on its website states very clearly:

An important part of coping with a cancer diagnosis is recognizing emotions and feelings. Treatment that deals with our emotions and relationships (sometimes called psychosocial interventions) can help people with cancer feel more upbeat and have a better quality of life. But there’s no good evidence to support the idea that these interventions can reduce the risk of cancer, keep cancer from coming back, or help the person with cancer live longer. Still, things like group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.

https://www.cancer.org/cancer/cancer-basics/attitudes-and-cancer.html

So, it seems that belonging to a support group has some positive effects, not on survival or anything like that, but in feeling less tired and in stress reduction. There is a support group in the Valley. I haven’t attended any of the meetings yet. I’ve been too goddamn exhausted to do that until now, but maybe next month! Then, maybe I’ll be less tired!

The American Cancer Society, on its website, starts off with this: When a person is told they have cancer, they might find themselves wondering:

  • Did I bring the cancer on myself?
  • Can my emotions really make cancer grow or affect the outcome of my treatment?
  • Can I control the tumor growth by visualizing how my body is fighting the cancer or by thinking myself well?
  • Would relaxation or keeping a “positive attitude” help cure my cancer?

I can easily reply an emphatic NO! to all these questions and the website goes on to refute each in turn.

Ehrenreich writes:

In the rational explanation that many psychologists would offer today, optimism improves health, personal efficacy, confidence, and resilience, making it easier for us to accomplish our goals. A far less rational theory also runs rampant in American ideology—the idea that our thoughts can, in some mysterious way, directly affect the physical world. Negative thoughts somehow produce negative outcomes, while positive thoughts realize themselves in the form of health, prosperity, and success.✤

The upshot of the idea that negative thoughts produce negative outcomes is the notion that people bring their diseases on to themselves by thinking negatively. Never mind that this idea is completely debunked by the American Cancer Society and people like Barbara Ehrenreich, there is a strong current of belief ‘out there’ that we are the victims of our own negativity. That goes for people with chronic illnesses, auto-immune diseases, and cancer. If you’ve got it the ‘reasoning’ goes you’ve brought it upon yourself.

This of course dovetails nicely with the predominant capitalist morality in our culture which states that individuals are inherently responsible for their actions and weakness of all kinds is abhorred, shunned, and denigrated. If people exhibit any signs of weakness, whether they are poor or in ill-health, it stands to reason that they must be responsible for their condition. That’s why people, especially those caught up in a full-blown subscription to capitalist morality, often go to great lengths to hide their poverty and ill-health. They are also the ones that tend to judge most harshly the poor, the homeless, the disenfranchised, the physically disabled, the chronically ill and the aged, even if they themselves could be included in any one of the categories I just mentioned.

Myeloma is a disease of the bone marrow. It’s entirely organic. As of yet there is no cure for it. It will not respond to positive thoughts or negative ones either, for that matter. Ehrenreich writes that “There is a vast difference between positive thinking and existential courage.” ✦ If there’s anything I strive toward it’s existential courage. However, if you catch me in a moment of deep angst over my imminent (yes, ten years is imminent) death, cut me some slack. I can’t always be perfect!

__________________________________________________

*Barbara Ehrenreich, Bright-Sided: How Positive Thinking is Undermining America. 2009. Kindle Edition, Location 89.

✤Ibid., Location 125.

✦Ibid., location 145.

Interesting Couple of Days

Yes, interesting couple of days. I’m on a dex high right now after taking my week’s worth of chemo meds yesterday. Good time to write. For those of you who have been reading my blog, you’ll know that dex (dexamethasone) gets me stoned like I’m on twenty cups of good medium coffee. I get the shakes with it too. It’s a little difficult to keep my fingers on the right keys on my laptop. Still, it works for me.

Wow, how my life has changed in just a few months since my diagnosis. Again, for those of you who have been following me along over the past few months you’ll know that my diagnosis just confirmed for us that I was pretty sick for a long time, unable to do things I so enjoyed like drawing, printmaking, going out, working on non-profit boards including the board of the Cumberland Museum and Archives. The Museum Board is a great board and I’m hoping to get back to active involvement in a reasonable time, but to be realistic, it probably won’t be for a while yet. I need to figure out lots of things, including how much I can back off my pain meds and still be okay.

Because oncologists deal with organic disease, they don’t deal well with pain, which, as I’ve noted often in my past blog posts, is invisible and difficult to diagnose. I think that if doctors have themselves been touched by pain issues, either themselves or members of their families, they may have a better understanding of what people in pain experience. My orthopaedic surgeon came right out and told me that Western medicine isn’t good with pain.

No wonder so many people turn to alternatives to deal with pain, physical or psychic, even though there is no science behind their use. Simply, put all forms of medicine, effective or not can’t deal with the huge, overwhelming elephant in the room: death. Medicine, by definition, is about healing the body. There is no healing death. Faced with that wall of immovability, we as individuals grasp at straws. Some of us, I daresay many of us not captured by the statistics, turn to non-medical solutions to pain management. The most turned to alternative to modern medicines of all kinds is alcohol. It’s cheap, it’s legally available, and if you don’t push the social and legal boundaries around its use, you’ll be okay. You’ll be able to avoid opprobrium and jail. Of course, there’s a lot of controversy about addiction, its sources and possible solutions to substance abuse, but the reality is that mental illness is a huge part of the equation and underlies much of the ‘problems’ we humans have in dealing with life and its many challenges.

Gabor Maté

I’m with Gabor Maté when he argues that much of mental illness is engendered by early life trauma mixed with underlying facilitating organic, physiological, even cellular level factors. There is no doubt that genetics play a role in determining quality of life as it relates to pain and suffering. Maté argues that no issue is more relevant than early childhood trauma in determining how we deal with pain in later life. I don’t know if Maté’s argument will ever win the day, but if it does, you should be able to walk into your doctor’s office and expect to be asked right off: “Tell me about what it was like for you as a child. Tell me about your mom and dad. How did you get along with them.” I’m so tempted to write up a short(ish) questionnaire to address some of the issues around parent/child relations in early life. Somebody has probably already done it, but I haven’t done enough research to figure it out and besides, I have ideas of my own to test out. In any case, back to my main point in writing this blog post.

Dr. Fehlau

Wednesday at 1PM, Carolyn and I went to the hospital to meet with the staff in the Palliative Symptoms Management Clinic (or something like that). We met with the nurse, Adele (not sure I ever got her family name) and Dr. Barbara Fehlau, Inc. Dr. Fehlau used to work at the clinic where my family doctor is located in Comox. Now she works full time in palliative care and pain management using whatever techniques she finds useful which she proudly notes she found travelling all over the world. She didn’t say so specifically, but she alluded to the fact that modern Western medicine is pretty good at using drugs to deal with pain issues but lousy at any other treatment protocols. She has a pain clinic where she uses a range of techniques to alleviate pain including acupuncture. She’s a very strong proponent of meditation and says she meditates for forty minutes in the early morning and another forty minutes before bedtime. I used to meditate every day and for some unfathomable reason stopped. I have opinions about meditation and other ‘mindfulness’ activities but they will have to wait to be expressed in another post. In any case, Dr. Fehlau is calm, very controlled, and I am cautiously optimistic. She has a personal history of dealing with pain and told us that she was about to get knee replacement surgery. I’ve been to the pain clinic in Nanaimo and that worked to some extent but I’m still dogged by pain. The myeloma isn’t helping of course.

Okay, so now what? Well, Dr. Fehlau told me to call her clinic and get in to see her there so she could do some interventions. Then she talked about end of life issues and asked me if I was aware of the services offered in the Valley around end of life palliative care, MAID, etcetera. I said that I did know some things but there’s always more that can be learned. I’ll get on that.

Speaking of souls, do I have a belief system? She asked me about my belief system and if I had beliefs that some people find comforting as death approaches like a fast train in the dark. I said ‘physics’, that’s my belief system if I can even say I have any kind of belief system. I was never big on ‘soul’ music. Oh, I think that we humans are extremely creative in coming up with ways of finding some sense in death and the creation of the ‘soul’ is one of those. Whatever rocks your boat, as far as I’m concerned. Maybe it’s time I explain more about my philosophy of life, but it will have to wait too, getting in line with my ideas about meditation and other ‘mindfulness’ strategies.

So, now I’m back in my bed, staring at the ceiling with the light filtering through the blinds at the head of our bed. Dr. Fehlau, knows that I’m on the death train because of the myeloma I have and she is clear that my future can be counted now in months rather than years. Pain is one thing. Strategies for making peace with life when I have very little left is another thing. And what about Carolyn, Marika and Arianne. Carolyn is the love of my life and my daughters are very near and dear to me. I need them to be involved in the process of my dying but it’s not easy. Carolyn, being the person that she is, has been thinking a lot about what it means for me to die at home. She’ll need some help, but she can speak for herself around these issues. Help is available for respite and home support. Carolyn has to think about life without me too. She’s five years younger than me so that’s an advantage right there. With some help she may even be able to continue to live where we do now if that’s what she wants. Unfortunately it’s impossible to make too many plans too far ahead, but there are preparations that, made now, will help a lot when the time comes.

I may be premature in thinking about these things, but I really can’t help myself. I need to know. Do I want to consider Medical Aid In Dying? You bet. If if comes to that. One thing though: I am now connected to some of the end of life services in the Valley through Community Home Care. That’s a new one for me. Man, there’s so much to learn about dying!

Addendum:

This post is already long enough but I can’t help giving you a taste of how our daily conversations go these days. They would be completely incomprehensible to people not ‘informed’. So here is a typical early morning talk. Me and Carolyn.

Carolyn: How did you sleep?

Me: Well, last night Ben rocked me to sleep while looking after the issues around my injection site. I slept from 11:30 until 6:30 straight.

Carolyn: That’s great! So you talked about changing your hydro routine. What do you want to do about that?

Me: I’m thinking of taking two breakthroughs this morning then another two around mid-afternoon while I wait for Dr. Fehlau’s 4.5 prescription to come in. That should keep me going until eight when I can take a six slow-release. The dex is kicking in. Sleep tonight could be a challenge. The cyclo will slam me down though, counterbalancing the dex. The Duc has to do its work too. I’ll see about going poo earlier in the evening so that I don’t have to get up during the night. Maybe Ben can come help me sleep too. We’ll see.

[Carolyn is off this morning to pick up a prescription for me and to take care of some Museum business. We talk about the Museum a lot too and about other things. Come to think of it, I think some of those conversations would also be incomprehensible to the ‘uninformed.’]

See ya later.

Living in the Shadow of Death

Strangely enough, I find myself wondering about what it would be like to live on death row.

We don’t have death rows in Canada, but there are about two thousand six hundred Americans in twenty-nine states right now sitting in cells awaiting their deaths by lethal injection or by other means, depending on the state. Most are still waiting for their date with the devil because they can appeal in so many ways and it seems that the average time now spent on death row is over sixteen years. There is an increasing hue and cry in the US about the time people have to spend on death row arguing that the wait itself is “cruel and unusual punishment.”

…the European Court of Human Rights in 1989 ruled that extended periods on death row violated a provision of the European Convention of Human Rights that forbids “inhuman or degrading treatment or punishment.” While acknowledging the legality of the death sentence in certain cases, it nonetheless forbade Britain to deport a German man to Virginia to face capital charges because he might spend years on death row facing “the anguish and mounting tension of living in the ever-present shadow of death.”

https://www.bnd.com/living/liv-columns-blogs/answer-man/article151691567.html

Right, “he might spend years on death row facing ‘the anguish and mounting tension of living in the ever-present shadow of death'”. Well, you know, I’m feeling a little like that myself, actually. I’ve been told I have an incurable cancer, but one that can be treated. It looks like I will go into remission sometime, probably in a few months, but who knows for how long. After that, if my myeloma doesn’t react to new treatments upon an inevitable relapse, I will surely die from organ failure. So, I wait and wait and wait not knowing if my next chemo treatment will work or not. The end result is preordained, however. No getting around that. How is this different from a death row inmate who applies for an appeal for his terminal sentence not knowing whether or not he will be successful? If he is successful this time, what about the next time? He knows that at some point the avenues for appeal will run out. When that happens he will suffer from organ failure like me, but that will be a systemic, total failure of all bodily systems as he lies there on a gurney in the execution room being administered a lethal injection of a deadly concoction of poison.

The analogy I use between my cancer diagnosis and a death row sentence is certainly not perfect. No analogy is. For instance, I don’t have to spend the bulk of my days in a small cell with bars. Nor do I have guards watching over me. That said, the comparison between my myeloma diagnosis and a death row sentence is fair if focussed on the psychological dimensions of an indeterminate cancer survival prognosis and an indeterminate execution date for the death row inmate. Chemotherapy is akin to an appeal: both buy some time but just postpone the inevitable.

I imagine that death row inmates are not pre-occupied twenty-four hours a day with the fact that they will eventually end up on the gurney in the execution room more than I am focussed all the time on the fact that my cancer is incurable, and hence terminal under the ‘right’ conditions. It’s just that the uncertainly of the situation is combined with the certainly of the outcome. That is disconcerting to say the least. I am definitely living “in the ever-present shadow of death”, but, of course, we all are. My shadow is possibly more opaque than yours at the moment, that’s all. Until I got my ‘death sentence’ I could go about my days thinking about projects I was doing, walks we would be going on, trips we would take. Now, it’s not so easy to do these things. Oh, it’s still possible, but utter exhaustion, chemo, lab and doctor visits, imaging sessions, etcetera, complicate things. I can only hope things will be different when I go into remission. I have a canoe that needs a new canvas skin and I have a sculpture I want to complete.

This all brings me back to the ‘value’ of sudden death. Sudden death does have a very important feature: its suddenness. No time to think about it, no time to live in anguish, etcetera. Looks like I won’t have the luxury of a sudden death. Maybe I will, we never know, but the way it’s going now, it’s not likely. So I have to figure out another tactic, or set of tactics to deal with the uncertainty of my life but with the certainty of my imminent death.

Problem is my death is not just about me. Yes, it’s an intensely personal experience, but other people are involved. Is it fair for anyone to focus so much on having a good death that they ignore everyone around them? Is it okay to be completely selfish about our own dying?

According to this op-ed in the Los Angeles Times, dying at home, although it seems like a reasonable thing to do, entails consequences, especially for care givers, and especially when home support and respite care are not available. This op-ed provides me with a not-so-subtle reminder to get my living will done. I probably shouldn’t procrastinate on that one.

A Balancing Act

So, yesterday we went to the hospital for my usual Thursday injection of bortezomib and to get the rest of the meds I take orally. This time it was a bit different because I am now on a full dose of cyclophosphomide. I was a bit trepidatious about it. I wondered if the symptoms going from a half dose to a full dose might produce twice the level of distress from the symptoms. Would I have more nausea? Doesn’t seem like it at the moment. Would I have more brain effects like lightheadedness and dizziness? Doesn’t seem like it for now. At this point it seems like it’s business as usual. I may lose my hair with the added dose of cycloformaldehyde (my name for cyclophosphomide) but that’s no big deal, I could also see darkening of skin colour and nails hardening, etcetera. Those effects are yet to be seen. Another side effect of my chemo meds is infertility. Gee, that’s really got me worried.

My tummy seems nicely settled at the moment. That’s good. Hydromorphone (hydro for short) tends to make one constipated. It sure as hell did that to me. However, most of the chemo meds I’m taking tend to produce diarrhea. Do they balance each other out? Not necessarily. Pooing regularly is very important to me now and I sure don’t need to rip my anus apart with constipation. Bring on the Dulcolax. One in the morning and one at night seem to do the trick, but I have to be on top of it because things change so quickly with chemotherapy. At the moment all is okay on the anal front. Oh, and my butt gives profuse thanks to our bidet toilet seat. That was one very wise purchase!

Last night I took my usual dose of hydro (which I found out doing research a couple of days ago that it’s one of the drugs some states in the US use for lethal injections in capital punishment). Because I have my bortezomid injection earlier in the day and I’m prone to swelling and issues around the injection site, I was told to take Benadryl as a means of counteracting that. So, I took a couple of Benadryl and that helped me sleep for four hours or so, but the dexamethasone (dex) kept pushing back wanting to make me more hyper. I slept, like I said for four hours, but after that the dex won and I lay awake for most of the rest of the night. However, thankfully, the Benadryl did counteract the dex so that I wasn’t as hyper as I might get otherwise. I was quite relaxed, actually. Around four AM I took another one milligram of hydro because my hip was hurting me more than I am prepared to tolerate. That seemed to do it, the pain attenuated and I was more comfortable. Taking one milligram of hydro on another day under different conditions and it would have no effect. It’s all about timing and balance.

As I lay in bed last night unable to initially fall asleep I checked out the ceiling above our bed. A few weeks ago I noticed signs of wetness in the ceiling drywall. It’s pretty easy to tell if your roof is leaking and you have drywalled ceilings. The paint begins to ripple and buckle slightly as the water soaks through the drywall. I am prepared to put up with some of that, but we need to ensure that it isn’t getting much worse. We painted that ceiling not long ago so I had a baseline to work with. I don’t think it is getting worse, but the solution is to get up on the roof and tighten all the screws holding down the metal roof. Metal roof screws can loosen off over time and cause problems ten or fifteen years after installation so it’s a good idea to tighten them down periodically. We’ve done that, thanks to Tim (our son-in-law) on the studio roof, and the shop roof is only a couple of years old so no need to do anything with that roof. Now, it seems, we have to do the house. I’m not about to go up there, neither is Carolyn. We’ll have to hire somebody to do that, somebody steady on their feet and with good, non-arthritic hands.

Then I thought about the studio. It’s a bit of a mess at first glance, but I set it up to do some printing months ago and it does look like a mess. But it’s not really. Someone else looking at it or going in there sees mess (unless they’re an artist). It does need some tidying up, but I’m the only one who can do that, except for moving some of the heavier pieces of equipment and my sister-in-laws stuff. A number of people have shoved ‘stuff’ into the studio to get it out of the house and out of the way, but in doing so have damaged one of the paintings I was working on, punching a hole in the middle of it. It was bound to happen. Now I have to decide if it’s worth repairing that painting or not. Sooner or later I’m going to have to go into the studio and assess my capacity to work. I could maybe do a small woodcut or linocut or finish a painting or two. I’ve got lots I could do, but do I have the energy, and can I overcome the shakes that are a side effect of some of my chemo meds? And what about that arthritis? Those are the questions.

At one point last night, about twenty minutes after taking the extra one milligram of hydro, I lay on my back and realized, heh, I don’t have pain anywhere in my body! Holy shit. I can guarantee you that that is a rare occurrence. How did it happen? Well, as best as I can figure, I had all my various meds balanced out. The slow-release hydro was looking after my regular pain, the Benadryl was counteracting the dex as well as looking after the injection site issues. As long as I stayed still, I was painless! Of course, a few minutes later, when I decided to move to sleeping on my right side, I started getting pain in my thoracic area, something I’m quite familiar with. But heh! Lesson about balance taken!

Balance seems to be everything in my life at the moment. It sure wasn’t always a concern for me to the extent that it is now. Now, I could think about going into my studio and working, say, for an hour instead of for a whole day. I can think about going for short walks instead of running marathons thus balancing my need to rest with my need for exercise. I need to take time to think about how my meds work and how to get the most out of them without too much stress on my body and emotions. Age is a huge issues but instead of pining for the good ol’ days, finding age and cancer appropriate balance is working for me. Of course, I’m still going to die, but that will help out with the cosmic balance between life and death. More on this to come.

Moving on up.

So, I’m over the shock of my cancer diagnosis. It’s been four months, after all. That doesn’t mean I’m happy about it, but it does mean that we (and I have to include Carolyn in everything here) have moved on from the initial storm of emotions around the diagnosis to settling in for months of chemotherapy and complete disruption of our lives. We are moving into a new routine. Every day is almost predictable, at least for now. I can’t say that I’m bored at this point, but I certainly am getting restless. I’ve gone down to the studio a couple of times lately and poked around. I really do miss drawing and printmaking. I want to get back to them soon and I really want to finish a small sculpture I started last year. Problem is I’m so exhausted all the time.

Not all people with cancer have the same reaction to the disease itself nor to the chemo meds and the opioids. Not all cancer patients are anemic all the time and I’m told that not all experience a lot of pain or the exhaustion I’m feeling. Every cancer is different and close to two hundred types have been identified. Breast cancer is the most common followed by lung and prostate cancers although there are several different varieties of all three types of cancers. Multiple myeloma is very uncommon and is the rarest of the blood cancers. Lucky me.

This morning we saw the local oncology GP and he told us that everything is going well with my therapy but that for the third cycle starting tomorrow they will be punching up the cyclophosphomide (the main chemo med) to one hundred percent. I didn’t know this, or I forgot, but I haven’t been up to full dose on this chemical yet. The doctor said that they started me off slowly to ensure that I could tolerate the shit, but now they were going to have to ‘challenge’ me. I have no idea how that is going to affect the side effects I am inevitably going to get except to amplify them. Yep, that’s what I can expect, amplified side effects. Yum.

I also learned this morning that I have six more chemotherapy cycles before they can consider whether or not I’m in remission. That means I will know by late August or early September. Oh well, I didn’t want to do anything this summer anyway, now did I. The way I’m feeling at the moment, I’m thinking that I might be able to get out on some short excursions come the sunnier, warm weather, but laying about the back yard by the pond sipping a cold drink doesn’t seem so bad either. Today is the last day of my previous cycle and the best of the whole lot because I’ve had a bit of a ‘holiday’ from my meds. Tomorrow, I’m back in the trenches with full-blown cyclo, dex, and bortozemib. I had an infusion of zoledronic acid today too, that’s a bone strenghtening drug. It gives me a raging headache so I take a couple of acetaminophen to help deal with that.

I have to get back to the hospital in a couple of hours for a CT scan of my right femur and cervical spine area. My orthopaedic surgeon wants to check my cervical spine for any changes in my degenerative disk disease and arthritis, my other nemeses. He also wants to determine if the excavators in my femur are in any danger of breaking through the bone or not. I’ve been experiencing more pain in the area lately and he wants to stay on top of that. Good for him. I like his attitude.

Enough for now.

Well, this is a pain in the ass!

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!

Interesting Days

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.