For starters: HAPPY EASTER, folks. As a Christian, this the the day I celebrate most meaningfully, as it is the day Christ conquered death. It’s the day that separates Jesus from Gandi, from Mother Teresa, from all the other really good people who live and have lived. It’s the day that paid for my salvation, and the day that gives me the greatest hope. He lives!
Now for the news… it’s been a while since I have posted, and there’s lots!
I am scheduled for a Kyphoplasty procedure next Tuesday morning. This is the procedure that was cancelled for the March 26th date because Dr L, my cardiologist, wanted to see me first. Well, I had an appointment with him, during which we reviewed some test results, and he gave me more tests to take to review in our next appointment. The net result seems to be that I have lost a relatively significant amount of function in my lower left ventricle: it is apparently squeezing at 45% efficiency rather than the normal 55%. Dr L describes this as a significant but not life-threatening issue, and has started me on Doxapine to reduce my blood pressure to make it easier on my heart. The only problem with this is that I didn’t have high blood pressure, so now I have low(erish) blood pressure, which results in dizzy spells when I stand up and so on. I also suspect this med isn’t going to be a big help in my campaign to be less tired and “lazy.”
It is Dr L’s contention that this damage was caused by Velcade, rather than Malaphan as I had previously understood. I’ll have to chase him a bit on that, but he seems to think that, although my heart was normal going into the cancer treatment in toto (I have prior cardio tests that show this), I had damage showing in tests just before the stem-cell transplant, so just before the Malaphan. I have not researched either of these chemo agents as regards heart issues yet, and will update when I have more info… but nonetheless this is interesting, to say the least. We don’t often hear about chemo doing heart damage as a side effect, do we? Or did I just miss the memo on that?
Anyhow, getting back to where I started: I have back surgery next Tuesday! Well… perhaps I ought not to characterize it as “surgery”… it’s certainly relatively non-invasive. Kyphoplasty is done with needles, basically. I’m not even sure I will be getting stitches. I DO know it’s a one-day in-and-out procedure. Amazing, really, what medicine can accomplish these days. Good timing too: my pressed-nerve nausea and sneezing are starting to make sporadic appearances again. It will be good to stabilize, and hopefully even raise, T9 and T12. Dr D, the back specialist, has promised me stability in those vertebrae, but not raising. He will try, and thinks he will be able to, but since the last known fracture incident was 18 months ago, and since the tumours have been gone for at least 6, and probably closer to 9, months, there is a good chance that there has been some bone healing that has taken place, which means re-raising the vertebral space will be minimal at best.
I’m going to be referring to a couple of Myeloma Beacon (MB) articles in this post. I really need to give the folks who run that site, and even more especially those who contribute, a shout-out: I have spent a lot of time there, and in that time have learned a great deal and been able to interact with quite a few folks… it’s been an important place for me as I have worked through this process, and have no doubt it will continue to do so.
On that: I have found it very important, and very encouraging, to be able to read about the stories of other folk going through what I am, and to interact with them. It makes a huge difference knowing I am not alone here, and going to forums and blogs is almost the only way we, as Myeloma folk, have of doing so as our cancer is relatively rare. I, for instance, only actually know one other individual, Kirk, and he lives a good 45 minutes from me… and there is no support group that I know of anywhere closer.
OK… so here’s the first link: MB published an article that was very timely for me earlier this week, entitled “Study Investigates Cement Leakage Risk Following Vertebroplasty And Kyphoplasty In Myeloma Patients“, about a study which outlines the likelihood of perfect vs not perfect outcomes… and according to everything I read there, my chances are pretty close to 100% of getting a good outcome, which is certainly comforting. Combine that with a surgeon who does this procedure as a matter of course, and my confidence is high indeed! Anyhow… that’s going to happen next Tuesday morning. Think of me.
Probably the biggest issue I am facing nowadays is my lack of physical stamina: there is just not very much gas in the tank at all, emptying it goes quick, and filling it goes very slowly. My mind has almost completely cleared, with the possible exception that my memory seems to be playing tricks on me a bit: I clearly remember things that just simply are not so. This is far too amusing to Beloved to be allowed to continue but I am unclear as to either cause or solution.
However, my body has not kept pace with that big ol’ muscle between my ears. I am tired, really tired, a lot of the time. Sometimes I ignore that and keep going. For instance, it is spring hereabouts, and I have a veggie patch that needs and gets my attention. But sometimes the turning fork is running so well that I say to myself “Oh, just one more row of digging”… and then I come in the house shaking, and fall asleep in my chair. Or I take my bike out for a ride, and go one or two blocks too far: same result. And not only that, but then the next day, I have no motivation to get out there. It’s mildly frustrating, to say the least. Sometimes a bit more than that, frankly. Of course, I shouldn’t be too hard on myself. If I compare with where I was at just a couple of months ago, I’ve already come a long way, so there is certainly hope.
And of course, it also doesn’t hurt to read from others who are going through the same thing, like one of the most prolific myeloma bloggers / writers / speakers, Pat Killingsworth, who earlier this week published an article on MB entitled “What Would I Do If I Didn’t Have Multiple Myeloma?” In that post, he writes:
But the things I have given up so easily to live this new life – my job; an active life jogging, golfing, and skiing; working long, but rewarding hours around the house and in the yard – it’s all gone, and I will never get it back.
We who suffer from Multiple Myeloma live lives of loss: loss of ability, loss of possibility, and even loss of life. Certainly loss of innocence: we are very definitely disabused of the notion that we are immortal… and the increasing physical frailty that is part of this cancer is very emphatic in that regard. This cruel cancer certainly gives me cause to, as Pat says in that post:
…take a few moments now and again to mourn the loss of my former life – and to try to remember what it would be like if I didn’t have multiple myeloma” …. “because the loss here is immeasurable. It’s incalculable.
And, if/when one takes a moment to consider, it really is. If I think on what has changed for me in the past 18 months, it is stunning. I’ve gone from being highly physically active, really quite strong and in great shape, to being a couch potato. One upside (there are others) on my couch-potatoedness is a complete lack of bonafide guilt, as there is really nothing I can do about it. But the physical loss may well not be the biggest one for me, and that’s saying something because it’s certainly a very big loss for me. No, I think the biggest loss is the loss of innocence and naiveté about the reality of existence, the new realization of the temporal nature of my life, the Solomonic futility of it all, knowing that the future is not going to be as I had hoped and dreamed, but is probably going to be increasingly full of pain and suffering.
It’s hard to get up a lot of mornings, and yes, a good part of that is still physical. But no small part often is “why bother?” Now, to be honest, I don’t have a ‘woe is me’ thing going on. I am very grateful for the life I still have, for the people around me. And I am really not ‘suffering’: there’s no pain, and everything still works, albeit a lot slower. Each day has its challenges, as well as its joys, and even in this new paradigm life is well worth it, but the fact remains that coming face-to-face with your significantly more imminent mortality is going to leave a pretty big mark on your psyche. At least, it has on mine.
One last thought from Pat’s post: he refers to “selective amnesia” as a coping mechanism as he deals with the plethora of issues he’s dealing with. I think that is exactly right: if we dealt with the reality of our current existence as myeloma-sufferers with a constant comparison to our previous context, it would probably drive us crazy and would certainly make us severely depressed and even suicidal. And yet, by-and-large, I don’t think cancer sufferers are particularly depressed or suicidal. Probably more so than the general population (though that is not something I can prove, or even intend to research, frankly), but certainly a lot less so than our situations would ostensibly warrant.
By way of proof of my contention, I would invite those of you who are not cancer patients to visit your local hospital’s oncology ward. You’ll not see many, if any, tears there. Yes, you’ll see folks who look terribly ill, but you’ll as often as not see them joking, laughing, teasing the nurses. You’ll find them quite willing to engage you in conversation. You will, in a word, find them (us) to be pretty nearly normal in their actions and attitudes.
How is that possible? I really think Pat has a pretty good theory going there: we choose to forget the former reality of our lives, and instead deal as best we can with the new one. “New normal” is a term that is often used to describe how we cope, and it is an excellent phrase. After all, what choice is there? We can indeed choose to wallow in self-pity, but it won’t help. We can chose to wish for the former life, but it won’t be back. We can choose to get righteously indignant at the obvious injustice of it all, but there is no court in the land to deal with our complaint. The simple fact is that this is the hand life has dealt, and we must learn to play with it, and the easiest if not only way to do that is to largely forget about what came before as a functional reference point.
And I have to give credit: we as humans have a truly remarkable ability to cope, to adapt, to learn new ways of dealing with life. I think Pat’s “selective amnesia” may well be one of the ways we are able to do so, but there are certainly others. As the news gets more difficult and depressing, we seem to know almost instinctively that it will be even more important to laugh a lot, to be cheerful, and to be a bit dishonest with ourselves. After all, we need to balance the weight of loss and grief with as nearly equal as possible a weight of joy and positivity.
It can be difficult, of course. One of the things that is coming home to me nowadays is that, as I am less involved with the medical folks, I have more time to think this is a normal existence, and it often comes back to me that no, it really isn’t. We cannot completely avoid reality, as it turns out, and sometimes facing it can be a harsh experience. It is at those times that I am most grateful for my God, Beloved, my kids, and my friends. Without them to support or even merely distract me, I’d often be in real trouble here. I often wonder how those who are basically alone deal with cancer. The difficulties strike me as almost completely insurmountable if alone… and I feel a real sense of compassion for those folks.
As I was writing this, a comment came in on one of my previous blog posts, “looking down the well”, wondering how Beloved dealt with my funks when they arrived. I look forward to hearing her reply… caregivers certainly don’t have an easy time of it either.
Oh my… this certainly got long, didn’t it!? I had other things to talk about, but I’d best save them for another day!