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.