degenerative disk disease

Up, up in the air.

~ Roger JG Albert ~ 8 Comments

What do I want to do with this blog? The thought crossed my mind that just giving up on it would not be the worst-case scenario. I’ve been at it for a few years now so it wouldn’t be outrageous for me to either quit entirely or maybe just take a break over the summer. Mygawd, I’m not making any money writing it. Lots of bloggers make money on YouTube with their blogs. I don’t, so what’s the point? Maybe I could monetize my blog, attach it to a video log and turn it loose on YouTube. After all, we DO live in a capitalist society. Might work. Probably not. 

The weather has been wonderful lately if you want to lay about on a deck. I sit on the deck close to the rock/fountain and watch the birds come down for a drink. The one in the video here is a female goldfinch we think. She flits around avoiding direct contact with the fountain. It would probably knock her over if she did. 

The wisteria gives them some shelter and protection before they come down to the fountain, but they’re still wary. Smart birds. There are cats prowlin’ around here. Our princess is one of them and she’s a hunter sometimes, mostly mice, but we don’t want to tempt her with birds. She’s being such a brat lately. She seems to have figured out exactly when I’m just about to fall asleep, then she pounces on the bed, meowling like crazy and poking my face with her paw. 

Tilly has been hanging around the pond a lot lately. She patrols the perimeter sniffing around trying to get frogs to abandon their rocks along the shore. I don’t like the way she’s been fixated on frogs lately. She come close but she hasn’t caught any yet. I’d be very pissed off if she did. She spends most of her time under the deck these days where it’s cool. She’s got such a thick black coat she must really suffer in this heat, but she never complains.

Got a call from my Oncology GP this morning. He noted that my bloodwork is coming back from the lab within reference ranges (normal). Tomorrow I go to the hospital for another infusion of Daratumumab. After that, I don’t get another one until the end of August. As of this month, I’m down to once a month for the Dara. I keep taking my regular chemo meds, lenalidomide and dexamethasone, three weeks on, one week off. So, I’m in a weird space where I have no myeloma detectable in my blood, but I’ll be on chemo for the foreseeable future, that is, until the drugs don’t work anymore. At that point they’ll put me on another regime. That means that I must be vigilant around the side-effects of the chemo. It’s not always easy to tell chemo med side-effects from pain med side-effects. 

For an old man, I’m feeling pretty good these days for about fifty percent of the time. I’m sleeping moderately well most of the time, but I have wakeful nights periodically. My neck is what’s tormenting me the most these days. According to my Oncology GP I have OAD (Old Age Disease). I can’t turn my neck more than 3% left or right. Maybe 4%. Makes it hard to do shoulder checks when I’m driving. Of course, I still drive. What are you thinking? I just have to turn my whole body when I do a shoulder check. That’s fine.

Technically, I have degenerative disc syndrome and it’s common among older people. I’m getting a CT scan early next month to confirm the diagnosis. Once I get the scan, I can ask my GP for a referral to someone who might be able to do something for me. That would be good. If I do get some relief, I’ll be able to do more writing, and maybe some sculpting. I’d love to do a bit of printmaking too. Or maybe I could just lie on the couch more comfortably. That would be good.

13 It is all so surreal.

~ Roger JG Albert ~ 3 Comments

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.