The long and winding road (to recovery).
Yesterday marked five weeks since I got my last cycle of chemotherapy. If I am being 100% mathematically correct, I still received chemotherapy for 48 hours after that so it's almost five weeks as I write this, but that sounds like a distinction without a difference to me. The fact is that it has been over a month since I last had to have carefully-adjusted doses of drugs that were actively trying to kill me infused into my body, and that means that I am officially in the recovery phase from my chemotherapy.
I can't describe how chemotherapy affects every aspect of one's physical, spiritual, and mental health. I can try - like explaining how I could feel every centimetre of my entire GI tract, from mouth to anus, due to the damage to and irritation of my mucous membranes throughout my body - but in the end they would be like describing a fresh snowfall on Christmas morning as being white and cold. It just doesn't really do it justice. Suffice it to say that my life on chemotherapy was nowhere near as happy and fulfilling as my life off chemotherapy. And now I am off chemotherapy for good!
So back to my old life, right? I mean, if I'm not getting chemo, I should be back to normal, right?
Well... not exactly.
First off, I think many of my family and friends would have a good chuckle at the thought that I was ever anything that could be described as 'normal'. But self-deprecation aside, the fact is that I lost more than 24 centimetres of bowel during my surgery and post-surgical treatment. There were days that getting out of bed was all that I could accomplish, and other days that I managed to shower only to become completely exhausted by the process. A really good day - physically - was one where I could get out of the house and maybe go for a short walk on level ground, of which there is very little around where I live. This has been my life for the last five months - virtually unable to do anything other than walk from my bedroom to my living room and back again.
Before my surgery, though, I was much more active. My wife and I enjoyed kayaking, we went to the gym three times a week, we walked for coffee or to a restaurant over 1.5 kilometres away from our home - and over 100 metres altitude change - at least once a week. We weren't exactly fitness nuts, but we liked to stay active and enjoy ourselves in the beautiful outdoors around where we live. While that allowed me to be in pretty good physical shape which improved my ability to tolerate the surgery, radiation, and chemotherapy, all of that aerobic and muscular fitness atrophied to a tremendous extent over the five months of sloth-like inactivity. And that's only a hint at the the physical deconditioning that I went through. My brain suffered as well.
My world shrunk while I was going through chemotherapy. Being unable to get out of my house meant that I didn't think that much about the outside world, and to be perfectly honest trying not to die from either the cancer or the chemotherapy occupied a huge amount of my thoughts. In addition to this, one of the chemotherapy drugs that I was being given - oxaliplatin - is neurotoxic (damages nerve cells). While it is not listed in the (rather long) list of oxaliplatin's adverse effects, I noticed an increasing negative effect on my ability to find words, remember things that had happened recently, and even do relatively simple mental tasks like reading or solving puzzles. I wrote a post about my initial experiences with chemo brain about four months ago, just after my second cycle of chemotherapy. Like a lot of my adverse effects, this one seemed to get worse or at least more prevalent over the full course of my chemo. It was never as troubling or, let's be perfectly honest here, life-threatening as my other adverse effects, but I would be lying if I said I felt competent to go back to work based on the way my brain is working right now.
It seems like anything I knew prior to my surgery is still there and I can remember it. After I started chemo though... my experienced become vague and indistinct, like I am looking at them through a fog. I start saying something and then either can't remember an important word that will help illustrate my thought, or I forget what the point of my thought was in the first place. I see the headline for news stories on the internet and am able to read and comprehend the first and last sentences in the piece, plus maybe a quarter to a half of everything in between. Anything longer than a new article is too much for my memory and everything I have read gets muddled and confused. Plus I get exhausted if I read more than a handful of paragraphs.
A big part of my job is reviewing medical literature and synthesizing a response to a question about a given patient's clinical findings. Researching the evidence - doing a literature search and filtering the results for clinically meaningful studies or articles - seems to be one of those 'I know how to do that' things, but actually reading the articles to find out whether they are applicable to a patient would take me an eternity - if I could do it at all. And then to try to organize my thoughts into something concise and meaningful to a doctor or nurse who is caring for that patient?
I'm tired even thinking about it.
So right now, work is out. I don't know when or even if I will be able to return, but for now I definitely can't. So... what can I do in my recovery?
Well, the easiest and most productive thing I can do is to start the process or recovering whatever physical function I can. My goal is to get back to my pre-surgical state, meaning that I can do the same exercises at the same intensity level or walk the same distance over the same terrain that I could in January. I've gone for a few short walks over varying terrain lately and that is gong okay, plus my wife and I started back at the gym last week. I can do a full workout at about 1/3 the level that I could manage prior to my surgery which is great on the one hand - I mean, I can do a full workout - but which obviously leaves a fairly significant margin for improvement before I can meet my goals.
So what about mental recovery?
That's... more challenging. Obviously one of the things that I can do and have been doing throughout my therapy is to write. I am writing this blog, for example, which might seem like ample evidence that my brain is working just fine. The thing is that as you read this blog you would be forgiven for thinking that it flowed out of me in one relatively seamless piece. This is the way that I used to write - before my body and mind were poisoned, that is. A thought would occur to me and I would sit down and write relatively quickly and easily, generally managing to write around 1500 words per hour on average.
This blog is about 1250 words long to this point, and it has taken me about 4 hours to write that much after thinking about it and planning it for the better part of two weeks. And it is definitely not my best work (and I am saying that with an abundance of self-compassion). I know how hard it has been to organize my thoughts. I know how many typing errors I have made. I know how many times I forgot what I was going to write (hint: it's a lot) and how I had to go back through what I've already written to try to figure out where I was going with a thought. And even as I write that, I am keenly aware that what I have written here might make sense to me and me alone; it's entirely possible that you will read this and wonder what the heck I was trying to say in the first place.
I still write. It helps me in many ways, and I am hoping it will help me exercise my brain just like the machines at the gym help me exercise my muscles.
I also do as much puzzle-work (solving word puzzles and shape-arrangement puzzles are my favourites) as I can, and I keep challenging myself to read more. When I can't remember a word or what I was going to say I persevere, trying to be as gentle with myself as I can.
Frustration won't help me recover any more than tearing muscles by overstressing them during a workout will.
It's possible - highly unlikely, but possible - that my brain will not recover. If it doesn't... well, that's fine. I will do my best with what function I can recover. If I can't get back to work, then I will retire. It's kind of like my last flight; I'm not exactly planning on it and there's no specific reason to think that I won't recover my mental capacity, that I won't be able to return to work. But there will come a time when I won't be able to, or at the very least won't want to. And when that day comes - or if it has already come - I will move on and enjoy my life to the fullest, given what I can do.
My surgery, my radiation, my chemotherapy... they all had likely timelines with likely end dates. I don't think there will be an end to my recovery. The busiest, most active part of it is ahead of me, but I think it will just morph into some other form of continual self-maintenance and self-improvement that looks and feels very much like the few active things I am doing in my recovery now.
Like most of the journeys that I have been on (including the journey through my cancer diagnosis and treatment), I can only take it one step at a time. The road may be winding, but around each corner may lie the wonder of something unexpected.
I can't describe how chemotherapy affects every aspect of one's physical, spiritual, and mental health. I can try - like explaining how I could feel every centimetre of my entire GI tract, from mouth to anus, due to the damage to and irritation of my mucous membranes throughout my body - but in the end they would be like describing a fresh snowfall on Christmas morning as being white and cold. It just doesn't really do it justice. Suffice it to say that my life on chemotherapy was nowhere near as happy and fulfilling as my life off chemotherapy. And now I am off chemotherapy for good!
So back to my old life, right? I mean, if I'm not getting chemo, I should be back to normal, right?
Well... not exactly.
First off, I think many of my family and friends would have a good chuckle at the thought that I was ever anything that could be described as 'normal'. But self-deprecation aside, the fact is that I lost more than 24 centimetres of bowel during my surgery and post-surgical treatment. There were days that getting out of bed was all that I could accomplish, and other days that I managed to shower only to become completely exhausted by the process. A really good day - physically - was one where I could get out of the house and maybe go for a short walk on level ground, of which there is very little around where I live. This has been my life for the last five months - virtually unable to do anything other than walk from my bedroom to my living room and back again.
Before my surgery, though, I was much more active. My wife and I enjoyed kayaking, we went to the gym three times a week, we walked for coffee or to a restaurant over 1.5 kilometres away from our home - and over 100 metres altitude change - at least once a week. We weren't exactly fitness nuts, but we liked to stay active and enjoy ourselves in the beautiful outdoors around where we live. While that allowed me to be in pretty good physical shape which improved my ability to tolerate the surgery, radiation, and chemotherapy, all of that aerobic and muscular fitness atrophied to a tremendous extent over the five months of sloth-like inactivity. And that's only a hint at the the physical deconditioning that I went through. My brain suffered as well.
My world shrunk while I was going through chemotherapy. Being unable to get out of my house meant that I didn't think that much about the outside world, and to be perfectly honest trying not to die from either the cancer or the chemotherapy occupied a huge amount of my thoughts. In addition to this, one of the chemotherapy drugs that I was being given - oxaliplatin - is neurotoxic (damages nerve cells). While it is not listed in the (rather long) list of oxaliplatin's adverse effects, I noticed an increasing negative effect on my ability to find words, remember things that had happened recently, and even do relatively simple mental tasks like reading or solving puzzles. I wrote a post about my initial experiences with chemo brain about four months ago, just after my second cycle of chemotherapy. Like a lot of my adverse effects, this one seemed to get worse or at least more prevalent over the full course of my chemo. It was never as troubling or, let's be perfectly honest here, life-threatening as my other adverse effects, but I would be lying if I said I felt competent to go back to work based on the way my brain is working right now.
It seems like anything I knew prior to my surgery is still there and I can remember it. After I started chemo though... my experienced become vague and indistinct, like I am looking at them through a fog. I start saying something and then either can't remember an important word that will help illustrate my thought, or I forget what the point of my thought was in the first place. I see the headline for news stories on the internet and am able to read and comprehend the first and last sentences in the piece, plus maybe a quarter to a half of everything in between. Anything longer than a new article is too much for my memory and everything I have read gets muddled and confused. Plus I get exhausted if I read more than a handful of paragraphs.
A big part of my job is reviewing medical literature and synthesizing a response to a question about a given patient's clinical findings. Researching the evidence - doing a literature search and filtering the results for clinically meaningful studies or articles - seems to be one of those 'I know how to do that' things, but actually reading the articles to find out whether they are applicable to a patient would take me an eternity - if I could do it at all. And then to try to organize my thoughts into something concise and meaningful to a doctor or nurse who is caring for that patient?
I'm tired even thinking about it.
So right now, work is out. I don't know when or even if I will be able to return, but for now I definitely can't. So... what can I do in my recovery?
Well, the easiest and most productive thing I can do is to start the process or recovering whatever physical function I can. My goal is to get back to my pre-surgical state, meaning that I can do the same exercises at the same intensity level or walk the same distance over the same terrain that I could in January. I've gone for a few short walks over varying terrain lately and that is gong okay, plus my wife and I started back at the gym last week. I can do a full workout at about 1/3 the level that I could manage prior to my surgery which is great on the one hand - I mean, I can do a full workout - but which obviously leaves a fairly significant margin for improvement before I can meet my goals.
So what about mental recovery?
That's... more challenging. Obviously one of the things that I can do and have been doing throughout my therapy is to write. I am writing this blog, for example, which might seem like ample evidence that my brain is working just fine. The thing is that as you read this blog you would be forgiven for thinking that it flowed out of me in one relatively seamless piece. This is the way that I used to write - before my body and mind were poisoned, that is. A thought would occur to me and I would sit down and write relatively quickly and easily, generally managing to write around 1500 words per hour on average.
This blog is about 1250 words long to this point, and it has taken me about 4 hours to write that much after thinking about it and planning it for the better part of two weeks. And it is definitely not my best work (and I am saying that with an abundance of self-compassion). I know how hard it has been to organize my thoughts. I know how many typing errors I have made. I know how many times I forgot what I was going to write (hint: it's a lot) and how I had to go back through what I've already written to try to figure out where I was going with a thought. And even as I write that, I am keenly aware that what I have written here might make sense to me and me alone; it's entirely possible that you will read this and wonder what the heck I was trying to say in the first place.
I still write. It helps me in many ways, and I am hoping it will help me exercise my brain just like the machines at the gym help me exercise my muscles.
I also do as much puzzle-work (solving word puzzles and shape-arrangement puzzles are my favourites) as I can, and I keep challenging myself to read more. When I can't remember a word or what I was going to say I persevere, trying to be as gentle with myself as I can.
Frustration won't help me recover any more than tearing muscles by overstressing them during a workout will.
It's possible - highly unlikely, but possible - that my brain will not recover. If it doesn't... well, that's fine. I will do my best with what function I can recover. If I can't get back to work, then I will retire. It's kind of like my last flight; I'm not exactly planning on it and there's no specific reason to think that I won't recover my mental capacity, that I won't be able to return to work. But there will come a time when I won't be able to, or at the very least won't want to. And when that day comes - or if it has already come - I will move on and enjoy my life to the fullest, given what I can do.
My surgery, my radiation, my chemotherapy... they all had likely timelines with likely end dates. I don't think there will be an end to my recovery. The busiest, most active part of it is ahead of me, but I think it will just morph into some other form of continual self-maintenance and self-improvement that looks and feels very much like the few active things I am doing in my recovery now.
Like most of the journeys that I have been on (including the journey through my cancer diagnosis and treatment), I can only take it one step at a time. The road may be winding, but around each corner may lie the wonder of something unexpected.
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