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.

It is all so surreal.

From the time in late September until now, we’ve been living a life tainted with the surreal. At any time I expect Salvador Dali to peak around the corner of the hallway into the living room dangling a fluid clock from his arm peering at me silently from his secure death. I can’t seem to find a solid bit of ground, a place where I don’t have to feel the ethereal presence of the spectre of ‘incurable cancer’. Everywhere I turn all I see is wall with no door inviting me into the light beyond the uncompromising diagnosis of a life sentence with no chance of parole. Some people will argue that there is always a door, one just has to believe in it for it to appear and open. Imaginary doors like that don’t exist in any prison I’ve ever visited so I am left with the only tangible evidence I have and that’s based in the physics of concrete and rebar, and not in my imagination, which I confess, I thoroughly enjoy as a garden of pleasure and delight but which flickers inexorably out of existence like a holodeck program on Star Trek.

It wasn’t supposed to be this way.

We were supposed to retire in 2012 and do a lot of the things we had no time to do while we worked at our jobs. We could go camping in the off season and not during the busy summer season. We were supposed to go on long walks and go out for coffee when it struck our fancy. We could travel if we wanted to. We could get more involved in our community. Well, we did a lot of these things and more. But slowly, over the years, I lost energy. I could no longer accompany Carolyn on long walks. I could still putter around the house and fart around in my shop, but as time passed, puttering became more and more difficult, and then impossible. I knew that there was something wrong. I knew it for a long time. We tried to figure out what was wrong, but we came up empty handed time and time again.

Over the past few months, I became increasingly immobilized. I was short of breath after walking up the driveway. I was in so much pain that I was loathe to move. Then, in utter desperation, we went to see my GP. He ran some tests and from there it was just a matter of time before we got the definitive diagnosis of multiple myeloma. I was gobsmacked! It wasn’t supposed to go this way. But I’ve already written about this in past blog posts. What I have not written about is my new reality, as rapidly changeable as it is.

Most days now, I don’t do a hell of a lot of anything. I spend half the day in bed and the better part of the rest of the day in my recliner. Well, that’s mostly true, but not entirely. It’s strange, but it’s like I have a job again. Weekends are mostly free, but weekdays are taken up with visits to the lab, doctor’s offices, and hospital. For example, this week I have an appointment today with an orthopaedic surgeon in Campbell River at 1 PM to deal with the lytic lesions (tumours) in the long bones of my legs and the degenerative disk disease in my neck. Tomorrow I see the dentist at 2 PM because one of the very rare side effects of one of the chemo drugs I’m taking is a degenerative jaw thing. On Thursday I do the chemo routine again with pills in the morning and a visit to the Cancer Centre at the hospital for my injection and visit with the nurses. I have to check my calendar for next week, but I know that I have an MRI on the 19th.

I expect this will change as my treatments progress, but it will still be that my treatments, office visits, etcetera will be during the week and I’ll have weekends ‘off’. I should have fewer appointments with my GP and even with the chemo crew. Lab visits will still happen frequently so they can monitor what’s happening with my blood. Things will get very routine if all goes well. What we’re aiming for is remission within a few months.

Don’t get me wrong, remission is clearly an important goal. If I get full remission for three or four years that would be amazing. Still, it’s hard to free my mind of the verdict I know will not change. The multiple myeloma may not kill me, but it sure brought to the forefront the reality of my death. I’m almost seventy-three years old. I’ve had a very good life for the most part but I want more.

So it begins…

First off, I’d like to welcome all of you who are new to following my blog. It’s gratifying to know that my writing is of interest.

[Still holding off on the post about the Emergency Department at the Royal Jubilee Hospital in Victoria. I’m working on it, but I need to write this post and at least one more first.]

Day before yesterday Carolyn drove me up to the North Island Hospital, Comox Valley Campus (I think that’s right) for my first chemotherapy treatment using a drug combination sometimes referred to as CyBorD. The ‘cy’ stands for cyclophosphamide, ‘bor’ stands for bortezomib and ‘d’ stands for dexamethasone. This article from 2009 suggests that this combination is associated with a very rapid response with manageable toxicity. I can only hope that it works for me.

I get the cyclophosphamide (cyclo) and the dexamethasone by tablet to be taken orally every seven days on a cycle of four weeks. I get a subcutaneous injection of bortezomib on the same day as I take the oral doses of the other two drugs. I get another drug by infusion once a month. It’s called zoledronic acid and is a bone strengthening medication often given to patients who have weakened bones due to cancer, which I do. I haven’t had my first injection of zoledronic acid yet but that’s coming soon.

So, I take a schwack of pills, probably fifteen, every Thursday morning then head up to the hospital in the afternoon for my bortezomib injection and for a visit with the oncology nurses. The oncology department at the hospital is superb. The staff is wonderful, calm, attentive and supportive.

The day before the day before yesterday Carolyn drove me to the hospital for a visit with the GP oncologist who is the local connection I have with the oncologist at the BC Cancer Agency in Victoria. Like the rest of the staff, Dr. Bakshi explained all the procedures I was about to experience calmly and attentively. One thing I appreciated with Dr. Bakshi was the way he explained the difference between myeloma and other forms of cancer. Myeloma is not like pancreatic cancer or other forms of virulent cancer. It’s more of a lay-low, make you sick for a long time type of cancer. It’s not unusual for people with myeloma to live ten years after being diagnosed and by then life is mostly a rear-view mirror phenomenon in any case. Myeloma is a disease mostly of older people.

I have to keep this post short because I have very little energy today. Yesterday I had a ‘high’ which was like I imagine I would feel after drinking twenty cups of strong coffee. Boy was I hyper! That’s caused by the dexamethasone. I had a hell of a time trying to sleep night before last, but last night was okay. I finally got a different prescription for my pain meds, hydromorphone. It’s a slow release prescription. I take two tablets a day twelve hours apart rather than taking two short acting tablets every four hours. I still have to get up to pee at night a couple of times, but not having the alarm go off every four hours is quite nice.

Today I got up feeling like I had a huge hangover. That feeling is still with me. It’s not all that pleasant, but it’s tolerable and I’m not going to complain about it. I knew that chemotherapy was not going to be a cake walk and I was right. I have a long way to go with it yet and the experience with it will change as I go along. I just hope I can tolerate this cocktail of meds and it doesn’t push my peripheral neuropathy to intolerable levels, nor does it damage my poor lone kidney.

More tomorrow if I can.

Just a note

This is just a short note to tell you that I started the second round of chemo this afternoon. It’s so anticlimactic when it actually happens and the drugs begin to course through my veins on their way to doing what they’re supposed to do, whack the hell out of certain proteins that are clogging up my bone marrow.

I have a lot to say about the type of cancer I have and the chemotherapy I’m getting and what I can expect, but for now, I just wanted you to know that I’ve had a pretty severe energy deficit over the past ten days or so. I’ve found it difficult to do much of anything. I can do a bit of reading and I’m liable to post the odd thing on Facebook, but I have had little energy for anything else.

Given how my energy levels have waned over the past while it’s clear to me that if chemo is unsuccessful, the remainder of my time on this planet will be distinctly unpleasant. I would probably live for some time without treatment, but there wouldn’t be much left of me in the end. That’s why I’m really pulling for the drugs that I started taking today. I’m visualizing them as an army of caregivers with standard-bearers for each of the drugs I’m taking, moving closer and closer to my bone marrow to restore some semblance of balance in there.

So, I’ve decided to put together a couple of posts over the weekend. I’m anticipating a bit of a surge of energy in the next little while to get me to a point where I can actually get some significant writing done. Stay tuned.

Today is not a good day.

Yesterday was okay. The day before was fine, but it’s hard to predict from day to day what my day will be like when I wake up in the morning. When I woke up this morning I knew that I wouldn’t be having a good day and contemplated just staying in bed. I try to maintain a modicum of a schedule so I like to get up around the same time every day although over the past couple of weeks my rising time has shifted a bit to the 8 AM side and is less inclined to stick to my former rigid 7:30 AM time.

I know my day won’t be a good one if I wake up from an unsound sleep with my body in full tingle mode, especially if it’s accompanied by the sensation of spiders crawling all over my legs. My reaction to my first cursory assessment of the state of my body is to hunker down, pull the covers over my head, and forget about it. But I don’t do that, do I. No, I get up, stagger into the bathroom clutching my cane in the hope that it will help me maintain my balance, and get myself into the living room where I usually plunk myself down into my recliner. I know I will spend the day in utter exhaustion reluctant to even get up to pee.

This pattern of not knowing until I wake up what my day will be like has been going on for years. That’s nothing new. I have no idea what differences in my daily routines will be wrought by the new chemical soup I will be ingesting in various ways as the oncologists stir up a new chemotherapy routine for me next week. The chemotherapy is bound to throw things out of whack in lots of ways some I can prepare for, some I can’t do anything about. Over the years, I’ve almost gotten used to being restricted in my mobility, but in fairly predictable ways. If I wanted to do something, like attend a meeting or go to a concert, I would know that if I did that I’d pay for two or three days after with exhaustion and pain. It was unthinkable to contemplate attending an event two days in a row or doing simple jobs around the property after a previous day of activity. My life has become less and less social over the years.

Truth be told, I’m a little depressed. The time between chemotherapy treatments has given me time to think, and thinking often gets me into trouble. So, I did an evaluation of my life to date going over high and low points, achievements and regrets. Probably a mistake, but one I’ve frequently made so I’m familiar with it. I even looked at pictures of myself over the years, from the time I was around two years old to quite recently. I thought about the different stages of my life, my time at home with my family, my time away to boarding school in Edmonton, my crazy teen years, working with my father, college, university, marriage, teaching, volunteer work, art, woodwork, etcetera. Then on top of that I overlaid health issues that I’ve experienced. I don’t need to go over all of my health problems here, but I had a few broken bones along with the discovery in the early 90s that I was vitamin B12 deficient and that I would need to inject B12 into my leg every month or so for the rest of my life. The discovery of my B12 deficiency was made when I complained to my doctor about fatigue, brain fog, dizziness, and that sort of thing. In 2002 I had my left kidney removed because I had renal cell cancer. Later I had an appendectomy. Still, I complained of fatigue, brain fog, dizziness and vertigo. There is a high incidence of Multiple sclerosis in my family so we chased that for a while but found nothing. Recently I was diagnosed with multiple myeloma which makes sense of all the other symptoms I’ve been having. I’ve probably had ‘smouldering’ multiple myeloma for years. So, now, I come to this:

I’m 73 years old (very close to it). I have bone marrow cancer, one kidney, B12 deficiency, degenerative disk disease (in my neck), arthritis, and who knows what else ails me. I’m old enough to die as Barbara Eirenreich argues and I’m okay with that, but the suspense is killing me. I’m being told that I could live quite a few more years with a few good ones thrown in there too. Still, I have incurable cancer and old age is coming after me. I’m beginning to envy people who die of sudden heart attacks or massive strokes. They have no time to think about all the things there is to think about.

I’ve discussed this with a friend of mine who also has multiple myeloma and his idea is that he doesn’t focus on his disease at all, or on his age, or any other potential killer. No, he focusses on what needs to be done: the shed needs a new roof, the canoe needs a new skin, baseboards need to be installed, grandkids need hugs. Dying will take care of itself when there is no other option, when it goes to the top of the priority list and refuses to be ignored any longer. I find myself thinking the same way. Yes, I get a little depressed when the extent of the threats to my life are displayed in front of me, but I get over it pretty quickly.

And I think about life and death. They aren’t opposites as we generally think of them. They cannot exist without each other. My life, like the lives of the nine generations of my ancestors who have lived in Canada are blips or interludes in the continuity of time and space. Mushrooms are a good analogue for us, I think. They push up through the ground cover from the mycelium below, flowering for a bit then melting back into the biomass to contribute again to the mass of life on this planet. Of course, for most of us in the course of history, thinking of ourselves and our species primarily as biological phenomena hasn’t been enough. The fact that we are temporary agglomerations of matter is not terribly satisfying for us and our big brains. We’ve loathed death and we deny it in every way we can, individually and socially. I try to face death as I face life. I try to put my life, my history, the phases of my body’s growth and decay in the broadest context I can. I don’t care to give them more importance than they are entitled to in the context of life on this planet.

My post on the social inequality in Emergency Departments is coming but my next one is about our immune system, the traitor that it is.

Grinding It Out

My oncologist called this past Wednesday to discuss changing my chemo cocktail. The one I had been on for less than a week caused a very bad rash around my whole midsection along with a mild fever. So, I stopped taking that set of meds and am now waiting for word from the pharmacy here at the hospital telling me that my new meds have arrived. I’ve got appointments lined up for the first week of December, but I may be called to come in earlier. It’s all par for the course. Hurry up and wait.

Thing is, this new set of meds has caused some pretty significant side effects for a couple of people I know with myeloma. We’ll have to keep a close watch on symptoms, especially those related to peripheral neuropathy. Can’t say I’m looking forward to the new meds but then again, I’m not too sure what the alternatives would be. I’ve sometimes thought about what would happen if I turned down any and all chemo. I know that there are drugs that are more palliative than chemo and I seriously wonder how many more years of good quality life I could get out of benign neglect rather than with aggressive intervention. These are just things I think about late at night when I’m falling asleep along with visualizing my death bed.

I’ve been reading Barbara Ehrenreich’s book Natural Causes. She’s a couple of years older than me and had a malignant tumour removed from a breast some time ago. She’s fit, she’s healthy but she also writes that: “I gradually came to realize that I was old enough to die.” She means that she’s had a good life, a fulfilling life, which is much more than is afforded many of us. She notes that the military considers eighteen year olds old enough to die and that there is no ‘best before date’ stamped on our asses. Some political leaders lead well into their eighties and nineties. That said, there is a time, when we reach seventy or so years of age when our obituary is likely to read “died of natural causes” than anything else. At a certain age, she argues, there is no need for an explanation for dying. It’s okay to die. Of course we should expect to die. Dying is as natural as being born although we generally consider it a travesty and a high order insult to life. I visualize myself dying, but I’m not convinced that the visualization can ever be very accurate. The closest I can come to visualizing the end of my life is when I’ve had a general anesthetic. Under a general anesthetic, the first drug they administer puts one under, makes one unconscious. If that’s the way I’m going to go, I can live with that. I watched as they put our last dog Wilco down a year ago August. First the sedative, then the lethal dose of whatever it is that kills. That kind of end would be fine with me. If I have to do it, and I don’t see any way out, this is what works for me.

Pain is an entirely other matter. I’ve had too much of that in my life and I don’t want to die under a heavy blanket of pain. Some pain would be alright, but nothing overwhelming. No pain would be the best, but that’s asking a lot of this aging, crumbling body to deliver. So, I’m willing to compromise and accept some pain when my dying time comes. I watched my mother as she lay dying in her nursing home bed almost two years ago now. She had Alzheimer’s and was unable to communicate at all verbally. She did communicate her pain, however. She was under high doses of morphine but we could tell when the morphine would wear off because she would get more and more agitated. I have no idea what she was experiencing, but I have the strong sense that it wasn’t at all pleasant. I was not there in her room when she actually took her last breath but as my sister recalls it, it was all fairly anti-climactic. Chances are very good that I won’t follow my mother’s example in death. For one thing, with myeloma I’m not likely to live long enough, and for another thing, I’ll probably still be sentient and able to make some decisions myself about my own death, unlike what happened to my mother. My mother was a very fine mother, cheeky as all get out sometimes and able to maintain a sense of humour before some pretty daunting odds at times. Dementia robbed her of end of life quality of life. That’s a shame. One of my sisters died a few years ago. She was four years older then me and had lung cancer. She was sentient for most of the time or her dying, but I wasn’t there when she finally gave up her last breath. I was a ferry ride away and unable to make it. She died a half hour before I got to the hospice centre where she ‘lived’. I know one thing for sure. She was pumped full of morphine for some time before she died and that effectively shut down her ability to decide anything.

Lately I’ve been experimenting a little with my pain meds. I’m on a large dose of hydromorphone (not related to morphine- a lot stronger, actually) taking two 1mg pills every four hours. I tried to back off some and take a lower dose every four hours for a day. I felt I could probably manage that because my pain was pretty much under control. Mistake! My pain is under control because I’m taking shitloads of hydromorphone. When I tried to back off, pain started to come back in my neck, ribs, right pelvic area, legs and shoulders. I knew that if I didn’t resume my twelve mg pill load a day that I would soon be completely incapacitated and bedridden. The decision was a no-brainer, but I was hoping for a better outcome.

One of the issues, of course, is that I haven’t really started treatments yet for multiple myeloma. I’ve been diagnosed and all that, but I haven’t had any chemotherapy to mitigate the effects of the disease, so it may be that in a few weeks or months and I go into remission that I’ll be able to back off my pain meds successfully. Wow, that would be cool. For now, I’ll continue ingesting lots of hydromorphone and maybe indulge in a beer or two, maybe even a tiny bit of scotch. It’s okay, all my specialists say a couple of beer are ok. I didn’t ask them about the scotch.

One (or more) of my readers here have suggested that I don’t swear anywhere near enough in my narrative. Well, fuck that! I’ll swear if I want to, swear if I want to, swear if I want to. You’d swear too, if it happened to you! (Figure out the song this is based on). Fuck!

Tread lightly, you could break a bone!

I told you in my last post that I had gotten a skeletal CT scan a week ago Saturday, November 9th. I know what these scans are looking for and I was somewhat apprehensive about getting the results. I still haven’t heard from my oncologist about the scan and I won’t be talking to him about it until Wednesday, the 20th. However, my GP called me on Friday the 15th at 5:30 PM to talk to me. Truth is, whenever my GP calls at 5:30 on a Friday evening it’s never good news.

The first question he asks me is if I’d heard anything about the scan. I said no, nothing. He then proceeds to tell me that I have a four centimetre tumour (lesion) in my right femur. Now, that’s a fairly large lesion but it’s in a fairly large bone too. Still, one of the main problems with multiple myeloma is bone lesions. Patients can have several bone lesions simultaneously making their lives somewhat precarious. Any wrong move can lead to broken bones and immobility.

My GP is rightly concerned about this femoral lesion and tells me that I may need a full length splint to keep my leg immobilized but it’s Friday evening now and I’m in no shape to even consider getting one, especially if it means going to the ER. That’s not going to happen. Not in a hundred years!

After a time my GP and I settle on a plan to keep me more or less immobilized, at least until Monday. Carolyn and I get back to our dinner. A while later my GP calls again after having consulted with an orthopaedic surgeon. The surgeon tells him that I will probably need radiation on that tumour and that radiation treatments happen in Victoria. Until then, I need to keep my right leg as immobile as possible. We’re getting a wheelchair on Tuesday. That will help, and on Wednesday I talk to my oncologist about where we go from here in terms of chemotherapy and now radiation treatments.

You know what? I want some straight answers. That’s all. I know that straight answers are not as easy to come by as they should be, but I’d like a clear, unadulterated assessment of my prognosis at the moment, if you don’t mind. So far, my oncologist and I had not even discussed bone lesions and the treatments for them, and we assumed that the lenalidomide/dexamorphosone chemotherapy drug combination would work and that we would reassess in a year or so.

Yes, I understand that multiple myeloma is highly treatable although it’s incurable, but every myeloma patient presents with an idiopathic set of conditions making blanket prognostications about remissions and potential lifespans kind of useless, if not overly optimistic. So far I have no idea how bad a case of myeloma I presented with and my oncologist is not really interested in what stage I’m at. He says he’s much more interested in how a patient responds to treatments than where they might be on a staging continuum. That’s fine. I hope that sometime soon we will actually be able to assess just how I’m doing on a new course of chemotherapy drugs and that we will be able to conclude that what I’ve experienced so far is a temporary glitch in my treatment.

Whatever. I like taking road trips on winding roads in unfamiliar territory, but a nice stretch of open highway now and again can be exhilarating too. I’d like to see some open road for a change where obstacles can be seen a long way off and I can put the petal to the metal. Is that too much to ask for?