29 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.

14 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.

12 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.