Yesterday I got to use my MMJ "card" for the first time. I put "card" in quotes because I don't have the actual card yet, just a temporary one sent to me via e-mail. This surprisingly is the first time I've ever used MJ, despite having multiple opportunities to try it starting in high school, through college, and afterwards.
If you haven't heard, I start chemo next Tuesday, so I was very eager to get access to MMJ before hand because it supposedly is very good at treating the side effects. Here is the story of my journey from cancer patient to Cheech and Chong fan.
I asked both oncologists about MMJ. The radiation oncologist thought it might be a good idea, but didn't want to be involved in the process for fear of it affecting his medical license. The medical oncologist was very happy to print out an instruction sheet complete with an ID number I could use to register with the state.
Okay, onto the MA state website to set up an account and go through the process. The instructions said I'd need to upload a photo of my ID (in this case, my driver's license) as well as a photo to be used for the MMJ ID. It had to be a head and shoulders shot with eyes open in front of a white or off white background. After much trial and error, I finally got a decent picture of myself posing in front of our off-white refrigerator. Of course, when I got to the corresponding step in the online registration, they said they had my driver's license photo on file, and recommended that I use that. So much for the kitchen photo shoot.
Fast forward a couple weeks and I get a confirmation e-mail with my temporary ID. Now, normally I'd expect I could just show the temporary ID on my phone screen, but when I called the dispensary to ask if that was sufficient they said no, they wanted a paper printout. Grr. I don't have a printer, so off to the library which turned out to be closed on Mondays. Double Grr.
The next day, after much trial and error in the library involving my laptop not connecting to the printer, and my library card number not working on their computers (it's been years since I checked out a book, so they purged it from their system), and a spontaneous treasure hunt involving me looking for my glasses that I left somewhere at random while all this was going on, I had my printout about 30 minutes later.
So off to the dispensary. I had to show my MMJ ID at the security camera at the door, then got buzzed into a small room where somebody was sitting behind a bullet proof window. They check your ID against another form of ID, and since I hadn't been there before they took a couple minutes to enter me into their system, then I was buzzed into the main area with a number of forms and disclaimers to sign, including a promise that I wouldn't allow any product to be used by anybody but myself, for fear of immediately having my MMJ ID invalidated.
It occurred to me after the fact that all this security wasn't just to keep non-patients out, but also because dispensaries can't take credit cards or checks because the banks don't want to be involved with a business that is illegal at the federal level. Thus, they have a lot of cash on hand, not to mention a valuable product that is not freely available to anybody. A high level of security seems rather appropriate.
After filling out the paperwork, I get a menu and have a talk with one of the assistants that can make recommendations, answer questions, and take my order to get filled by the staff in the back room. I'm a complete newbie at this, and talk about the various strains, THC vs CBD content, etc., just goes over my head. I order a small selection of edibles since I don't want to smoke, and am unsure about vaping at this point. Alright, I am now a MMJ customer!
After driving home while brazenly thumbing my nose at federal laws, I started my journey with half of a THC infused dark chocolate, or about 5mg of actual THC. Now the thing with edibles is that they take a couple hours to have an effect, but then the effect can last for hours and hours. If you don't get an immediate effect, do not continue eating because you might regret it later when they finally kick in.
The experience was interesting. Like an opioid, it did seem to reduce my pain for a while, and any remaining pain I simply didn't care about. It also gave me an odd combination of being both wired and mellow at the same time, as if I was very alert but everything was okay. I lost the ability to filter or apply tact to what I said, so if I thought something in your presence you'd hear it. It also caused some obvious short term memory problems, where I'd be talking about something and go off on a tangent, and then stop talking without ever getting back to what I was talking about in the first place, or even remembering that I was talking about it. And then the munchies came.
Munchies are good because I'm struggling to regain weight lost after my surgery and radiation treatments. I expect to lose more weight during chemo, so anything I can put on between now and then is to my benefit. Munchies, short term memory problems, and an everything is okay attitude are an interesting combination. Let me explain.
I decided to make myself a bologna sandwich. I went to the fridge, proceeded to take the bologna out and put it on the counter, then went looking for white bread. After looking over every shelf twice, I came to the conclusion we didn't have white bread, so took out the wheat and put that on the counter. Now to look for the bologna. I know there were a couple slices left because I'm the only one who eats it, and I really wanted to enjoy these last couple of sandwiches because when it's used up we won't be buying any more. But it was nowhere to be found.
Now, realize that I'm the type of person who turns lights off when leaving a room, turns the faucet off while brushing my teeth, and generally has a high level of disdain for people who leave the fridge door open for an extended time. To paraphrase George Carlin, take a picture, close the door, figure out what you want, then go and get it. So me spending a long time calmly looking for the bologna is very unlike me. Eventually I gave up, put the wheat bread back into the fridge and decided to eat the Chinese leftovers instead. After nuking those I saw the bologna sitting on the counter. Duh.
At bedtime I was really tired and completely unable to sleep, and yet the pain was starting to return, perhaps because I had spent a fair amount of time sitting with bad posture because I simply didn't care if it hurt a little bit. So a couple acetominophen and a melatonin at midnight allowed me to get a few hours of decent sleep.
So that was my first experience with a rather low-ish dose of MMJ. Based on my experience with other psycho-active medications, I expect my body to build up a tolerance and future adventures won't be quite so extreme. I'll also be experimenting with dosing as well as THC vs CBD. It's actually quite a bit like trying to find the right medicine and dose when dealing with anxiety and depression, except I don't need to go to the doctor's office repeatedly to get different prescriptions.
To sum up, my first impression is that it's not a miracle cure, but it is another tool in the toolbox for fighting cancer and the side effects of treatment. I expect it will be very useful on those days where I can't get off the couch, have a general sense of malaise, and tend to slip into a sour mood. It's not really useful for days where I want to get something accomplished, as driving and operating chainsaws while under the influence is a bad idea and generally frowned upon.
Wednesday, November 28, 2018
Monday, November 26, 2018
Day 39, A 5K and a Flare
Thanksgiving morning started off clear but very cold with temps around ten degrees and just enough of a breeze to make a cold headwind for the start of the Ayer 5K. Four of us started near the back of the pack, each with our own particular excuse to stay in bed on such a cold morning which we chose to ignore. We were two cancer patients, an Achilles tendon injury, and an arthritic knee.
Fast forward to Sunday, as this post will jump around the timeline like a trendy science fiction movie. I'm having a symptom flare which means pain that won't respond to ibuprofen or acetaminophen, laying on the sofa all afternoon watching football, and generally feeling very down. To answer my own question from my previous post, I'm not the least bit thankful for cancer as I find parts of the experience to be very sucky.
The race starts and we're off. I didn't do a warm up run so am very slow and stiff at the start. It's uphill into a cold breeze. At about the half mile mark I start losing feeling in my fingers and adjust my gloves so that my hands are balled up into a fist in the palm area of the gloves. It helps warm my fingers just a tad. It may not sound pleasant, but so far the race is going exactly as expected.
As my body loosens up the pace gradually increases until I'm approaching 10 minutes per mile. That's slow by my usual 5K standards but fast compared to the practice runs I had done in the previous week. By now it's just me and my running buddy Kelly from our original group of four. We're quite talkative and conversation turns to details of bodily functions and our personal issues with them, sprinkled with bits of inappropriate humor. It's quite typical of a running conversation, as there's something about endorphins that makes any topic fair game.
The weather in Vermont on Saturday would have been ideal in late December or January. It was perhaps a bit cool for November and there was almost of foot of snow in the woods, but it was above freezing and without any notable wind. I had visions of getting the chainsaw out again and cleaning up some other, smaller fallen trees, particularly the one leaning against one of the wood sheds, but my body advises against it. So instead we went for a brief snow shoe around the property, and then later for a walk down a road with a good view of the distant mountains. When not moving about outside, I spent way too much time staring at the screen of my cell phone.
By the end of mile 2 we had only taken one brief walk break and I was no longer feeling cold. I've run this race every year for the last decade and it follows the same pattern every year. Cold for the first mile, comfortable for the second, and starting to overheat a bit in the final mile. Just past mile 2 there's a modest bit of an uphill stretch leading to a bridge over the railroad tracks. Kelly asks if I want to walk, and I say we should wait until we get to the climb up to the bridge. Halfway up the climb she notes that we aren't walking. I had simply forgotten about it.
The further I run, the better my body feels. Endorphins have banished all pain, I'm breathing hard and feeling near my limit, but still have some reserve to use to pass other runners. Kelly is still keeping up with me, though I'm not actually trying to outrun her. Halfway through the last mile my body decides to stop feeling better and the slightest bit of nausea hits me. I decide now is a good time to walk, as the final uphill section is almost here. At the top of the hill we start running again, it's all downhill to the finish.
As I write this on Monday morning, it's a dreary weather day outside. While I'm not as down in the dumps as I was yesterday, I'm still feeling neither enthusiastic nor pain free. I'll get more accomplished today, though that will be mostly through sheer will and determination rather than any natural feelings of euphoria. It's very frustrating when I can't predict how I will feel from day to day, as it makes planning difficult. Bad days also feed my worst fears about my condition and the chances for a meaningful recovery. Suffice to say I'm more optimistic when running without pain than when watching TV in pain.
We pick up speed down the hill, now running at well under a 10 minute pace. I see the finish line and instinctively try to sprint for the finish, but again my body feels a bit off so the sprint is muted. Kelly matches my acceleration and we cross the finish line dead even. 5K completed in just a tad over 35 minutes.
This was my second slowest 5K ever, but by far the most enjoyable. To get the best 5K time involves some masochism and willingness to push your body well into the zone of discomfort. While I did push myself to the edge of discomfort, I didn't really feel like torturing myself. Doing so would have only netted a couple minutes faster time at most. As it was, all four of us that started the race together finished faster than we had expected.
Between hanging around talking to friends before the race, the race itself, and then eating apple crisp and more socializing after the race, I was on my feet for about two hours. As the endorphins wore off the familiar back pain started returning with a vengeance. I went home and spent most of the afternoon on the couch, until it was time to travel to a friend's house for Thanksgiving dinner.
My condition generally seems to be improving, but it's a few good days alternating with a number of bad days. The current string of bad days seems to have started just before the 5K, but I was able to ignore it for a while due to enthusiasm for the race and the holiday. When the enthusiasm is used up and the symptoms remain or get worse, it's emotionally devastating.
I think it's about time to force myself outside for a gentle run on this dreary Monday morning. Then there are errands to run and the general business of life to attend to. There are no epic adventures on the immediate horizon. It's time to focus on the here and now, and simply put one foot in front of the other.
Fast forward to Sunday, as this post will jump around the timeline like a trendy science fiction movie. I'm having a symptom flare which means pain that won't respond to ibuprofen or acetaminophen, laying on the sofa all afternoon watching football, and generally feeling very down. To answer my own question from my previous post, I'm not the least bit thankful for cancer as I find parts of the experience to be very sucky.
The race starts and we're off. I didn't do a warm up run so am very slow and stiff at the start. It's uphill into a cold breeze. At about the half mile mark I start losing feeling in my fingers and adjust my gloves so that my hands are balled up into a fist in the palm area of the gloves. It helps warm my fingers just a tad. It may not sound pleasant, but so far the race is going exactly as expected.
As my body loosens up the pace gradually increases until I'm approaching 10 minutes per mile. That's slow by my usual 5K standards but fast compared to the practice runs I had done in the previous week. By now it's just me and my running buddy Kelly from our original group of four. We're quite talkative and conversation turns to details of bodily functions and our personal issues with them, sprinkled with bits of inappropriate humor. It's quite typical of a running conversation, as there's something about endorphins that makes any topic fair game.
The weather in Vermont on Saturday would have been ideal in late December or January. It was perhaps a bit cool for November and there was almost of foot of snow in the woods, but it was above freezing and without any notable wind. I had visions of getting the chainsaw out again and cleaning up some other, smaller fallen trees, particularly the one leaning against one of the wood sheds, but my body advises against it. So instead we went for a brief snow shoe around the property, and then later for a walk down a road with a good view of the distant mountains. When not moving about outside, I spent way too much time staring at the screen of my cell phone.
By the end of mile 2 we had only taken one brief walk break and I was no longer feeling cold. I've run this race every year for the last decade and it follows the same pattern every year. Cold for the first mile, comfortable for the second, and starting to overheat a bit in the final mile. Just past mile 2 there's a modest bit of an uphill stretch leading to a bridge over the railroad tracks. Kelly asks if I want to walk, and I say we should wait until we get to the climb up to the bridge. Halfway up the climb she notes that we aren't walking. I had simply forgotten about it.
The further I run, the better my body feels. Endorphins have banished all pain, I'm breathing hard and feeling near my limit, but still have some reserve to use to pass other runners. Kelly is still keeping up with me, though I'm not actually trying to outrun her. Halfway through the last mile my body decides to stop feeling better and the slightest bit of nausea hits me. I decide now is a good time to walk, as the final uphill section is almost here. At the top of the hill we start running again, it's all downhill to the finish.
As I write this on Monday morning, it's a dreary weather day outside. While I'm not as down in the dumps as I was yesterday, I'm still feeling neither enthusiastic nor pain free. I'll get more accomplished today, though that will be mostly through sheer will and determination rather than any natural feelings of euphoria. It's very frustrating when I can't predict how I will feel from day to day, as it makes planning difficult. Bad days also feed my worst fears about my condition and the chances for a meaningful recovery. Suffice to say I'm more optimistic when running without pain than when watching TV in pain.
We pick up speed down the hill, now running at well under a 10 minute pace. I see the finish line and instinctively try to sprint for the finish, but again my body feels a bit off so the sprint is muted. Kelly matches my acceleration and we cross the finish line dead even. 5K completed in just a tad over 35 minutes.
This was my second slowest 5K ever, but by far the most enjoyable. To get the best 5K time involves some masochism and willingness to push your body well into the zone of discomfort. While I did push myself to the edge of discomfort, I didn't really feel like torturing myself. Doing so would have only netted a couple minutes faster time at most. As it was, all four of us that started the race together finished faster than we had expected.
Between hanging around talking to friends before the race, the race itself, and then eating apple crisp and more socializing after the race, I was on my feet for about two hours. As the endorphins wore off the familiar back pain started returning with a vengeance. I went home and spent most of the afternoon on the couch, until it was time to travel to a friend's house for Thanksgiving dinner.
My condition generally seems to be improving, but it's a few good days alternating with a number of bad days. The current string of bad days seems to have started just before the 5K, but I was able to ignore it for a while due to enthusiasm for the race and the holiday. When the enthusiasm is used up and the symptoms remain or get worse, it's emotionally devastating.
I think it's about time to force myself outside for a gentle run on this dreary Monday morning. Then there are errands to run and the general business of life to attend to. There are no epic adventures on the immediate horizon. It's time to focus on the here and now, and simply put one foot in front of the other.
Wednesday, November 21, 2018
Day 34, A Thanksgiving Challenge For You
Tis the season for posting gratitude lists on social media. I've been meaning to make one for myself, but it somehow seems superficial. Yes I'm thankful for the usual things such as friends, family, having a place to live, my health... oh, wait a minute, can I be thankful for my health when cancer may cut my life drastically short?
I've been struggling emotionally with my cancer diagnosis the last few days. It's a period of relative calm as I've mostly recovered from surgery and radiation but haven't started chemo yet. Thinking positive thoughts and spending time with friends helps for a while, but it's a temporary fix and sooner or later I have a moment alone when all the fears and worries come out. It hits me that I could do everything possible and the cancer could still kill me in a few short years. Hysterical sobbing usually follows.
It's not an inspirational moment and probably the less said the better. Let's leave it at I do have my weak moments as it's exhausting being strong all the time. I also worry that these moments of being an emotional and worried wreck aren't helping my chances of a recovery, which feeds more worry and negativity into the mix.
So what is the way forward? How do I find peace with a major health issue and so much uncertainty? One possible answer is radical acceptance. This is the idea that everything is as it should be. It doesn't mean approving of everything, just accepting it. In other words, not denying reality. It's part of the Buddhist concept of seeing everything correctly.
In my mind, it's a small step from acceptance to thankfulness, which raises the question, "Can I be thankful for my cancer?" Of course, the instinctive answer is "Hell No!", but let us consider the consequences of that answer.
Cancer is an undeniable and decidedly imperfect part of my body. If I'm not thankful for my body as a whole, then where does that leave me? Can I be at peace if I don't like my body? Everyone has to play the hand they're dealt (or in this case, the entire body, not just the hand, but I digress). My challenge is to be thankful for still being in the game and having a hand to play, even if I don't like some of the cards that are in that hand.
And while cancer is generally considered "a bad thing", there is some undeniable good that has come out of it. I didn't know how many friends I had and how much they loved me before, and for that I am truly thankful. I am slowly learning to make the most of each day even though no day is perfect, for which I am also thankful. As an example, I can't wait to run the Thanksgiving 5K tomorrow morning, and the fact that it will be super-frigid-cold will just make the experience more epic.
So my challenge to you on this week of Thanksgiving is to find something bad in your life and try being thankful for it. Look for the silver lining in the clouds. See how both the good and the bad have made you what you are today, and continue to shape who you will be tomorrow should you be lucky enough to have a tomorrow.
The astute reader will note that at no point did I explicitly express thankfulness for my cancer. I'm still struggling with that, and may decide that simple, non-judgmental acceptance is good enough. If it were that easy I wouldn't call it a challenge.
I've been struggling emotionally with my cancer diagnosis the last few days. It's a period of relative calm as I've mostly recovered from surgery and radiation but haven't started chemo yet. Thinking positive thoughts and spending time with friends helps for a while, but it's a temporary fix and sooner or later I have a moment alone when all the fears and worries come out. It hits me that I could do everything possible and the cancer could still kill me in a few short years. Hysterical sobbing usually follows.
It's not an inspirational moment and probably the less said the better. Let's leave it at I do have my weak moments as it's exhausting being strong all the time. I also worry that these moments of being an emotional and worried wreck aren't helping my chances of a recovery, which feeds more worry and negativity into the mix.
So what is the way forward? How do I find peace with a major health issue and so much uncertainty? One possible answer is radical acceptance. This is the idea that everything is as it should be. It doesn't mean approving of everything, just accepting it. In other words, not denying reality. It's part of the Buddhist concept of seeing everything correctly.
In my mind, it's a small step from acceptance to thankfulness, which raises the question, "Can I be thankful for my cancer?" Of course, the instinctive answer is "Hell No!", but let us consider the consequences of that answer.
Cancer is an undeniable and decidedly imperfect part of my body. If I'm not thankful for my body as a whole, then where does that leave me? Can I be at peace if I don't like my body? Everyone has to play the hand they're dealt (or in this case, the entire body, not just the hand, but I digress). My challenge is to be thankful for still being in the game and having a hand to play, even if I don't like some of the cards that are in that hand.
And while cancer is generally considered "a bad thing", there is some undeniable good that has come out of it. I didn't know how many friends I had and how much they loved me before, and for that I am truly thankful. I am slowly learning to make the most of each day even though no day is perfect, for which I am also thankful. As an example, I can't wait to run the Thanksgiving 5K tomorrow morning, and the fact that it will be super-frigid-cold will just make the experience more epic.
So my challenge to you on this week of Thanksgiving is to find something bad in your life and try being thankful for it. Look for the silver lining in the clouds. See how both the good and the bad have made you what you are today, and continue to shape who you will be tomorrow should you be lucky enough to have a tomorrow.
The astute reader will note that at no point did I explicitly express thankfulness for my cancer. I'm still struggling with that, and may decide that simple, non-judgmental acceptance is good enough. If it were that easy I wouldn't call it a challenge.
Sunday, November 18, 2018
Day 31, The Cabin Lifestyle
We have a humble weekend getaway in Vermont. Thoreau would think it ostentatious, but unlike the suburban practice of putting the largest possible house on the smallest possible lot, it's a small structure on a large lot. It's a combination that encourages spending as much time as possible outside enjoying the woods and the pond.
While it does have a furnace, the main room is best heated using the wood stove. In the winter this necessitates regularly carrying firewood from the wood shed outside to the small rack next to the stove. After the heating season is over there's more activity in the form of harvesting firewood (usually from trees on the property that have recently blown down and need to be cleaned up anyway), cutting to log length, and splitting the larger logs down to something that will fit into the stove. It is a lot of work, but it's also great exercise out in the fresh air, and if you enjoy that sort of thing like I do it is a lot of fun.
What I call the cabin lifestyle is mostly periods of physical activity alternating with lazing around reading a book, enjoying the scenery, or having a meal. Of course, having spent this past weekend living the cabin lifestyle, parts of my body are now fondly remembering the catheter, and how I'd lay around on the couch all day. Since the removal of the catheter, I've been steadily increasing my activity level until today when I ran into my current limitations.
A few weeks ago a fir tree blew over across one of the trails that we regularly walk on. This made it very difficult to traverse as it required doing the limbo under the trunk while trying to find a way through all the branches. Today I decided to see if I was well enough to cut up the tree, with mixed results.
While I did get the trail cleared enough to walk through, I only cut up the minimum amount of tree needed to accomplish that goal. There's still much more of the tree that will need to be cleaned up in the spring before I can drive the pickup truck down this trail.
There are two ways I could look at this. The first way was to note that a couple months ago I would have had no trouble cutting up the whole tree, so currently I'm only able to do about a quarter of what I'm used to doing. This would be called a results or goal oriented view and thinking that I didn't finish the job left me very depressed and focused on what I'm not able to do at the current time.
The other way to look at the situation is to note that I tried and actually did end up accomplishing something meaningful. It's not natural for me to look at things this way. It feels like getting a participation medal where the results don't matter, only that you tried. But a more zen way to describe it would be that it focuses me on what I can control: effort and having reasonable expectations. I had no way of knowing if my back would tolerate this, and while it did do better than expected, it's still not 100%.
It should also be noted that in any other year I'd wait until spring had arrived and the snow had melted before attempting this cleanup. After all, the six inches of snow adds another layer (no pun intended) of challenge to the cleanup. Did I mention that it required a quarter mile hike through the woods, up and down hills and over a couple streams to get here?
And of course the tree didn't cooperate either. There's a bit of a guessing game in the cut shown in the photo. Should the cut be top-down, expecting the log to fall down on the right side? Or bottom-up, expecting the log to fall down on the left side? I chose bottom-up for the final cut, which makes for a great action photo as you can see me crouching and lifting the saw to make the undercut.
It turns out I guessed wrong. The right side of the log decided to start falling and pinched the bar of the saw in the cut. Insert foul language here. I'm a quarter mile from any other tools and the only saw I have available is stuck in a tree. Trying to simply pull the saw out didn't work, it was more stuck than I am strong. Lifting the right end of the log to take the weight off with my right arm, while pulling the saw out with my left did the trick. But it also made my back complain.
When I'm healthy, I can use all my strength without hurting myself. What I'm pushing, pulling, or otherwise trying to move will either move in response to my best effort or it won't. My back is currently the weak link in the chain. If I try to use a majority of my strength in a manner it doesn't like, it will hurt and continue hurting for some time afterwards. On a good day that happens when trying to wrestle trees. On a bad day that happens leaning over the sink to spit out my toothpaste.
I'm making solid progress and daring to push myself to but not quite past my limits. In my mind, the cabin lifestyle is key to increasing my chances of making a full recovery. The periods of activity are good for building endurance, strength, and flexibility without the drudgery of working out in a gym (though I could probably use some of that as well). The periods of inactivity are ideal for resting and recovery. At no time am I watching TV and stressing out over the evening news, which it seems is something I do all too often in my normal life.
While it does have a furnace, the main room is best heated using the wood stove. In the winter this necessitates regularly carrying firewood from the wood shed outside to the small rack next to the stove. After the heating season is over there's more activity in the form of harvesting firewood (usually from trees on the property that have recently blown down and need to be cleaned up anyway), cutting to log length, and splitting the larger logs down to something that will fit into the stove. It is a lot of work, but it's also great exercise out in the fresh air, and if you enjoy that sort of thing like I do it is a lot of fun.
What I call the cabin lifestyle is mostly periods of physical activity alternating with lazing around reading a book, enjoying the scenery, or having a meal. Of course, having spent this past weekend living the cabin lifestyle, parts of my body are now fondly remembering the catheter, and how I'd lay around on the couch all day. Since the removal of the catheter, I've been steadily increasing my activity level until today when I ran into my current limitations.
A few weeks ago a fir tree blew over across one of the trails that we regularly walk on. This made it very difficult to traverse as it required doing the limbo under the trunk while trying to find a way through all the branches. Today I decided to see if I was well enough to cut up the tree, with mixed results.
While I did get the trail cleared enough to walk through, I only cut up the minimum amount of tree needed to accomplish that goal. There's still much more of the tree that will need to be cleaned up in the spring before I can drive the pickup truck down this trail.
There are two ways I could look at this. The first way was to note that a couple months ago I would have had no trouble cutting up the whole tree, so currently I'm only able to do about a quarter of what I'm used to doing. This would be called a results or goal oriented view and thinking that I didn't finish the job left me very depressed and focused on what I'm not able to do at the current time.
The other way to look at the situation is to note that I tried and actually did end up accomplishing something meaningful. It's not natural for me to look at things this way. It feels like getting a participation medal where the results don't matter, only that you tried. But a more zen way to describe it would be that it focuses me on what I can control: effort and having reasonable expectations. I had no way of knowing if my back would tolerate this, and while it did do better than expected, it's still not 100%.
It should also be noted that in any other year I'd wait until spring had arrived and the snow had melted before attempting this cleanup. After all, the six inches of snow adds another layer (no pun intended) of challenge to the cleanup. Did I mention that it required a quarter mile hike through the woods, up and down hills and over a couple streams to get here?
And of course the tree didn't cooperate either. There's a bit of a guessing game in the cut shown in the photo. Should the cut be top-down, expecting the log to fall down on the right side? Or bottom-up, expecting the log to fall down on the left side? I chose bottom-up for the final cut, which makes for a great action photo as you can see me crouching and lifting the saw to make the undercut.
It turns out I guessed wrong. The right side of the log decided to start falling and pinched the bar of the saw in the cut. Insert foul language here. I'm a quarter mile from any other tools and the only saw I have available is stuck in a tree. Trying to simply pull the saw out didn't work, it was more stuck than I am strong. Lifting the right end of the log to take the weight off with my right arm, while pulling the saw out with my left did the trick. But it also made my back complain.
When I'm healthy, I can use all my strength without hurting myself. What I'm pushing, pulling, or otherwise trying to move will either move in response to my best effort or it won't. My back is currently the weak link in the chain. If I try to use a majority of my strength in a manner it doesn't like, it will hurt and continue hurting for some time afterwards. On a good day that happens when trying to wrestle trees. On a bad day that happens leaning over the sink to spit out my toothpaste.
I'm making solid progress and daring to push myself to but not quite past my limits. In my mind, the cabin lifestyle is key to increasing my chances of making a full recovery. The periods of activity are good for building endurance, strength, and flexibility without the drudgery of working out in a gym (though I could probably use some of that as well). The periods of inactivity are ideal for resting and recovery. At no time am I watching TV and stressing out over the evening news, which it seems is something I do all too often in my normal life.
Thursday, November 15, 2018
Day 28, Poetic Torture and a Run
Let's start off with a quick recap. In the last four weeks I've been diagnosed with two cancers (local bladder and advanced prostate), and have subsequently had hormone therapy, surgery, radiation, the catheter from hell, not to mention test after test and every doctor wants a vial of blood to check something or other. Somehow I'm still surprised that this has left me fatigued, nauseous, and in pain. On the bright side, I've easily lost 8 pounds without even trying.
Today's test was a bone scan. It was poetic torture of a sort. To understand why, you first must know what I do for a living. I work in a machine vision company named Cognex and spent a significant portion of this year integrating a new 3D camera into our VisionPro software product. This camera produces high resolution 3D images of a part by shining a laser stripe across the part and then using a sensor set at an angle to the laser to triangulate the 3D positions where the laser is illuminating the part. To get a full 3D image, the part must be moved through the laser plane while the camera slowly builds up a 3D image slice by slice. While it is extremely accurate, the need to move the part and take individual slices takes considerable time relative to other technologies.
In a similar fashion, the bone scan involved building up a model of my bones by taking individual slices as I was moved under the sensor at an excruciatingly slow speed. I was told to breathe normally keep my fidgety body as still as possible while it took the image. We're talking 30 minutes during which I'm not supposed to move. That's a considerable amount of time to focus on how much one's ribs move up and down in normal breathing. Does that still count as laying still? Still there I was, a victim of the same relatively slow line scan imaging technology I work with for a living.
To add to the torture, before the scan I was injected with radioactive phosphorous and told to come back for the scan 3 hours later after it had a chance to absorb into my bones. The cancer in my back causes pain if I sit too long. So, figure an hour long car ride to the hospital, sitting in the waiting room, then a walk over to the local library to read and kill time while sitting, then back to the hospital cafeteria for a sit-down lunch, and more sitting back in the waiting room again. My back started complaining so I improvised by laying down across some chairs:
Once again fighting cancer isn't always an exciting action movie, but more like a montage of what would otherwise be dull and boring scenes waiting for the next appointment or test.
That's enough about back pain and medical tests. As I've committed to running a 5K on Thanksgiving day, after getting back home I forced myself out the door to do my first run in weeks. I had a disparate set of goals: Cover three miles, get acclimated to running in the cold, and get my heart rate up over 180 briefly. The run was a success on all counts even if dreadfully slow. My body simply does not respond well to time off from running, but should bounce back quickly if I get back out a couple times over the next week. I'll still be slow from being out of shape and having low blood counts from the radiation treatment (I now have medical proof of that), but should be able to take maximum advantage of whatever fitness I do have, which isn't something I was able to do today.
The other reason that got me out for a run was yesterday's meeting with the onco. He stressed that getting out of bed and off the couch improves my prognosis considerably. When I mentioned that ibuprofen helps with the pain but may be causing digestive issues (mostly due to collateral damage from the radiation, but the ibuprofen seems to make it worse), he said to add Prilosec and keep taking the ibuprofen if it helps me keep moving.
So while I'm still in pain, the general trend is that I'm able to do more and more for the same amount of pain. I'm almost back to where I was before all the treatments and surgery started. Better yet, my latest PSA number is half what it was a month ago. It all points to the cancer being slowly beat back even before chemotherapy begins. The onco wants to give me a couple more weeks off before starting that, so I should be feeling pretty good before the next round of torture, which should be starting sometime in the first week of December.
Sunday, November 11, 2018
Day 24, Life Part 3
October 19, 2018 was a day that changed my life forever. It's when I got my cancer diagnosis and started hormone treatment. It's not the first time my life changed drastically.
On May 19, 1989, I graduated college and moved to Massachusetts to begin my career. The world opened up. I was no longer the short and scrawny outsider that was bullied in school. It was the end of part 1 of my life, and the beginning of part 2.
Now of course this transformation actually happened over a number of years while I was at college, but the ceremony and symbolism of graduation made it easy to pick that as the point when everything changed. In a similar manner my cancer developed over time (but unknown to me), with a rather dramatic unveiling in the urologist's office, though happily not involving confetti, or the need to wear a cap and gown.
Life part 2 started off with some of the best years of my life. I was making new friends in Massachusetts and hanging out with old friends from college. I began dating as women finally seemed to take me seriously. Yes you read that correctly: my first girlfriend didn't happen until after college graduation. I got married, bought a house, then bought a Mustang. I changed jobs twice and ended up in a good position in a good company.
And I lived happily ever after? Not quite. The big problem with life part 2 was the feeling that something better was always around the corner. While this was generally true in my 20s, after a while things stopped getting better. In reality, my parents and in-laws were aging and friends got busy with family responsibilities.
Now to go off on a tangent, here's a tip for all you guys out there: When you observe that your life was on an upward trajectory until approximately the time you got married, do not state this verbally to your wife! Correlation may not be causation but that doesn't keep you out of the doghouse.
It wasn't all downhill after my 20s. I joined a running club, made new friends, and got to run the Boston marathon in 2011. I've wanted to run a second marathon but the situation never seemed right. I'd get injured during training and just think that next year would be better, as if there was an infinite supply of next years.
Living in life part 3 with cancer, there is no guaranteed "next year". It's possible I'll continue to live for months, years, or even decades but I really just don't know and can't know. If the cancer does get beat into remission (which I think is likely) I'll still have to undergo regular testing to see if it's making a return. There will be side effects from treatment that may linger for months or years. And of course, I'll still be subject to the normal processes of aging as all of us are.
Thus, the secret to life part 3 is embracing life in all its imperfections and focusing on the positive, the good, and the funny.
Today was the monthly brunch gathering of the running club. Yesterday was a rough day for me, as everything I ate seemed to give me abdominal discomfort, which in a way was an improvement over having little interest in food. However, the temptation to avoid a social activity centered around food was great. In the past I would have noted that there will be another opportunity next month, so if this one isn't going the way I want I can try again later. Not anymore.
Today also started off a little rough, but I went to the brunch anyway. Happily my body responded to the challenge and the good weather, and I got a walk in (not quite recovered enough for running yet) and was able to have a modest amount of food and a cup of coffee without major problems. While I may not have felt perfect, being surrounded by supportive friends was a great morale boost that I definitely needed.
After a little bit of peer pressure was applied I signed up for the Ayer 5K on Thanksgiving day. It's a race I've run for over 10 years straight. Unless my onco insists on starting my chemo a day or two before, 5K is a distance I know I can run/walk/crawl and still finish ahead of dozens of others even if I'm not having the best day. I can almost guarantee that Thanksgiving won't be a perfect day, but I'm learning to look past that and see that it's likely to at least be a good day.
So in closing, it seems that fate decided that my life part 2 had to end suddenly. I could just as easily have had a fatal car accident or a heart attack, and the tragedy would have been my sudden departure without a chance to fight. It might be a morbid thought, but given a choice between sudden death and cancer I'll happy take the chance to fight on in part 3, and intend to savor every positive moment it allows.
On May 19, 1989, I graduated college and moved to Massachusetts to begin my career. The world opened up. I was no longer the short and scrawny outsider that was bullied in school. It was the end of part 1 of my life, and the beginning of part 2.
Now of course this transformation actually happened over a number of years while I was at college, but the ceremony and symbolism of graduation made it easy to pick that as the point when everything changed. In a similar manner my cancer developed over time (but unknown to me), with a rather dramatic unveiling in the urologist's office, though happily not involving confetti, or the need to wear a cap and gown.
Life part 2 started off with some of the best years of my life. I was making new friends in Massachusetts and hanging out with old friends from college. I began dating as women finally seemed to take me seriously. Yes you read that correctly: my first girlfriend didn't happen until after college graduation. I got married, bought a house, then bought a Mustang. I changed jobs twice and ended up in a good position in a good company.
And I lived happily ever after? Not quite. The big problem with life part 2 was the feeling that something better was always around the corner. While this was generally true in my 20s, after a while things stopped getting better. In reality, my parents and in-laws were aging and friends got busy with family responsibilities.
Now to go off on a tangent, here's a tip for all you guys out there: When you observe that your life was on an upward trajectory until approximately the time you got married, do not state this verbally to your wife! Correlation may not be causation but that doesn't keep you out of the doghouse.
It wasn't all downhill after my 20s. I joined a running club, made new friends, and got to run the Boston marathon in 2011. I've wanted to run a second marathon but the situation never seemed right. I'd get injured during training and just think that next year would be better, as if there was an infinite supply of next years.
Living in life part 3 with cancer, there is no guaranteed "next year". It's possible I'll continue to live for months, years, or even decades but I really just don't know and can't know. If the cancer does get beat into remission (which I think is likely) I'll still have to undergo regular testing to see if it's making a return. There will be side effects from treatment that may linger for months or years. And of course, I'll still be subject to the normal processes of aging as all of us are.
Thus, the secret to life part 3 is embracing life in all its imperfections and focusing on the positive, the good, and the funny.
Today was the monthly brunch gathering of the running club. Yesterday was a rough day for me, as everything I ate seemed to give me abdominal discomfort, which in a way was an improvement over having little interest in food. However, the temptation to avoid a social activity centered around food was great. In the past I would have noted that there will be another opportunity next month, so if this one isn't going the way I want I can try again later. Not anymore.
Today also started off a little rough, but I went to the brunch anyway. Happily my body responded to the challenge and the good weather, and I got a walk in (not quite recovered enough for running yet) and was able to have a modest amount of food and a cup of coffee without major problems. While I may not have felt perfect, being surrounded by supportive friends was a great morale boost that I definitely needed.
After a little bit of peer pressure was applied I signed up for the Ayer 5K on Thanksgiving day. It's a race I've run for over 10 years straight. Unless my onco insists on starting my chemo a day or two before, 5K is a distance I know I can run/walk/crawl and still finish ahead of dozens of others even if I'm not having the best day. I can almost guarantee that Thanksgiving won't be a perfect day, but I'm learning to look past that and see that it's likely to at least be a good day.
So in closing, it seems that fate decided that my life part 2 had to end suddenly. I could just as easily have had a fatal car accident or a heart attack, and the tragedy would have been my sudden departure without a chance to fight. It might be a morbid thought, but given a choice between sudden death and cancer I'll happy take the chance to fight on in part 3, and intend to savor every positive moment it allows.
Tuesday, November 6, 2018
Day 19, Bouncing Back
People warned me that fighting cancer would be a roller coaster ride. When you consider that I'm normally a person of emotional extremes, calling this a roller coaster is an understatement.
Today was my last scheduled radiation treatment. However, like last Tuesday the machine was down, and they weren't sure if they'd get it back online, but they'd know in about an hour. Was this more bad luck? Or just a transient hiccup? Sometimes fighting cancer is as simple as staying calm and being patient (no pun intended).
It turns out it was a transient hiccup, and after my 5 minute treatment I literally jogged back into the waiting area as my form of taking a victory lap. Not bad considering an hour earlier I had made an offhand comment about back pain and the uncomfortable chairs, and the staff happily found a gurney for me to lay down in and rest while waiting. I felt obliged to mention that laying down in the gurney made my back much better and my pain can be very specific to what I'm doing. Walking typically isn't a problem, while bending over to feed the cat can be excruciating. The cat has no sympathy however, and thought I was just being the biggest tease when I very carefully and slowly bent at the knees instead of the back before dumping his breakfast into his bowl.
Part of my improved mood today is due to better management of symptoms. Yesterday I met with the radiation doc and mentioned my pain and nausea. I came away with a script for the nausea which helps greatly and a better plan for pain management.
There's basically 4 options for pain management each with their own downside:
The doctor convinced me that Vicodin is a good choice, as my use will be short term and he hasn't seen problems with cancer patients wanting to stay on the drug. Besides, ibuprofen will become an option again soon enough, and if the radiation treatments work I won't need much if any pain management. That said, I'm only taking the Vicodin at night, which means I can use more of my daily allowance of Tylenol during waking hours. (important side note: Vicodin actually contains some Tylenol, so when employing a strategy like this you have to count all medications which include Tylenol against the daily limit)
Great, so symptoms are under control and radiation treatments are completed. My mood and optimism are greatly influenced by how I feel. Generally speaking, if I'm not in pain and able to go for a run, how sick can I really be? It also helps that last night as I slept I dreamed of playing ultimate Frisbee.
Also of note, I voted today! Some call it a civic duty, I called it a good reason to shower and get out of the house for something other than medical reasons.
Next up is to see the urologist on Thursday about the catheter. It's an ongoing annoyance, but not nearly as annoying as urinary retention. For the time being I'm happy to count the catheter as part of my penis length and will note that it hangs nearly to my knees. Good luck getting that image out of your head!
Assuming I can lose the catheter on Thursday, I'll have almost a week of "time off" before meeting the medical oncologist to talk about starting chemo. That's my window to get back to daily walks, focusing on eating healthier, and generally getting rested and ready for the next battle.
Today was my last scheduled radiation treatment. However, like last Tuesday the machine was down, and they weren't sure if they'd get it back online, but they'd know in about an hour. Was this more bad luck? Or just a transient hiccup? Sometimes fighting cancer is as simple as staying calm and being patient (no pun intended).
It turns out it was a transient hiccup, and after my 5 minute treatment I literally jogged back into the waiting area as my form of taking a victory lap. Not bad considering an hour earlier I had made an offhand comment about back pain and the uncomfortable chairs, and the staff happily found a gurney for me to lay down in and rest while waiting. I felt obliged to mention that laying down in the gurney made my back much better and my pain can be very specific to what I'm doing. Walking typically isn't a problem, while bending over to feed the cat can be excruciating. The cat has no sympathy however, and thought I was just being the biggest tease when I very carefully and slowly bent at the knees instead of the back before dumping his breakfast into his bowl.
Part of my improved mood today is due to better management of symptoms. Yesterday I met with the radiation doc and mentioned my pain and nausea. I came away with a script for the nausea which helps greatly and a better plan for pain management.
There's basically 4 options for pain management each with their own downside:
- Tylenol, which can cause liver damage if you take just a little more than the recommended daily maximum.
- NSAIDs (aspirin, ibuprofen, etc.), which can cause bleeding and thus are bad after surgery.
- Steroid anti-inflammatories, which suppress the immune system, and besides I'll be getting plenty of that when starting chemo.
- Vicodin, see "opioid crisis".
The doctor convinced me that Vicodin is a good choice, as my use will be short term and he hasn't seen problems with cancer patients wanting to stay on the drug. Besides, ibuprofen will become an option again soon enough, and if the radiation treatments work I won't need much if any pain management. That said, I'm only taking the Vicodin at night, which means I can use more of my daily allowance of Tylenol during waking hours. (important side note: Vicodin actually contains some Tylenol, so when employing a strategy like this you have to count all medications which include Tylenol against the daily limit)
Great, so symptoms are under control and radiation treatments are completed. My mood and optimism are greatly influenced by how I feel. Generally speaking, if I'm not in pain and able to go for a run, how sick can I really be? It also helps that last night as I slept I dreamed of playing ultimate Frisbee.
Also of note, I voted today! Some call it a civic duty, I called it a good reason to shower and get out of the house for something other than medical reasons.
Next up is to see the urologist on Thursday about the catheter. It's an ongoing annoyance, but not nearly as annoying as urinary retention. For the time being I'm happy to count the catheter as part of my penis length and will note that it hangs nearly to my knees. Good luck getting that image out of your head!
Assuming I can lose the catheter on Thursday, I'll have almost a week of "time off" before meeting the medical oncologist to talk about starting chemo. That's my window to get back to daily walks, focusing on eating healthier, and generally getting rested and ready for the next battle.
Sunday, November 4, 2018
Day 17, A Week of Setbacks
At the end of a rough week, I am in a dark place right now. In my last post, a polyp in my bladder was described as "little more than a speed bump in the grand scheme of themes". While that is still generally true, there have been some complications. Suffice to say that in a span of 48 hours I had to seek urgent medical care twice just to take a piss.
The first hiccup of the week was when my first radiation appointment, scheduled for Tuesday, got cancelled when the machine broke down. That meant my first radiation treatment wasn't until Wednesday, just a couple hours before surgery for the polyp.
The surgery itself went well enough. I was put under general anesthesia, and then all sorts of equipment was shoved into my penis, up the urethra, and into the bladder to remove two growths, followed by a catheter to fill the bladder with a chemotherapy solution and hold it there for 30 minutes while I was in recovery. The main points here are that there is anesthesia, as well as incisions inside the bladder and some amount of wear and tear to the urethra to recover from.
There were two decisions made after surgery that in hindsight turned out to be poor decisions. The first was the decision to remove the catheter used to fill and then drain the chemotherapy solution from my bladder. The second was to send me home after only passing a small amount of bloody urine, despite my protestations that it seemed as if something was preventing me evacuating normally. Apparently this is a common post-surgical complaint, and most of the time it turns out to be a false sensation.
The first hiccup of the week was when my first radiation appointment, scheduled for Tuesday, got cancelled when the machine broke down. That meant my first radiation treatment wasn't until Wednesday, just a couple hours before surgery for the polyp.
The surgery itself went well enough. I was put under general anesthesia, and then all sorts of equipment was shoved into my penis, up the urethra, and into the bladder to remove two growths, followed by a catheter to fill the bladder with a chemotherapy solution and hold it there for 30 minutes while I was in recovery. The main points here are that there is anesthesia, as well as incisions inside the bladder and some amount of wear and tear to the urethra to recover from.
There were two decisions made after surgery that in hindsight turned out to be poor decisions. The first was the decision to remove the catheter used to fill and then drain the chemotherapy solution from my bladder. The second was to send me home after only passing a small amount of bloody urine, despite my protestations that it seemed as if something was preventing me evacuating normally. Apparently this is a common post-surgical complaint, and most of the time it turns out to be a false sensation.
In my case, it was a real sensation. After a 90 minute ride home including a stop at the drug store to fill some post-op prescriptions, I was feeling every pothole in the last several miles. But I still wasn't able to pass more than a few drops at a time. A call back to the hospital netted the suggestion to have a cup of tea and use a heating pad near the bladder to trigger the urination reflex, and if that didn't work by midnight go to a nearby ER. Of course, the tea did little more than provide more fluid to fill the bladder and up the urgency.
It became exceptionally painful, even though I was on a prescription pain reliever. The bladder hurt because it was distended and had just had growths removed. What did pass caused extreme pain in the irritated urethra. By the time midnight rolled around, I was screaming in pain with each unsuccessful attempt. There was a brief flash of hope when more than a few drops came out, but that effort couldn't be repeated.
So off to the ER at half past midnight, and I walked in with my hand cradling my much abused and hurting penis and lower abdomen. At this point all thoughts of being a strong person had left me. I simply didn't want "urinary retention" as my cause of death.
So to make a long painful story a tad bit shorter, they eventually got a catheter put into me on the second attempt. The first attempt was excruciating. The second one with a different catheter even more so. I was exhausted and in agony and had given up all self respect and freely screamed in pain throughout this procedure. It is easily the most pain I have felt in my entire life.
Happily, after about a quart of fluid was drained the pain had largely gone away and I was sent home with a catheter into my bladder and a baggie strapped to my leg. Unfortunately that catheter clogged on Friday morning. At least that was during normal business hours so off to the urologist for an urgent appointment.
At the urologist, after another several hours with a very uncomfortably full bladder, the plan was to estimate the amount of urine in my bladder using an ultrasound like machine, then remove the catheter and see how much I could void naturally. Of course, with the luck I'm having this week the batteries in the machine died so the nurse had to go fetch a fresh set.
The estimate was 650 cc, and I naturally passed maybe 50 of that. Shit. Hello catheter number three. The good news is that my pain levels were much lower, so I was able to deal with it using deep breaths and trying to relax, and no screaming was involved. The urologist didn't have great things to say about the configuration the ER had left me with, and instead of a bag he put a valve on the end which makes life with the catheter much simpler.
What's troubling is the urologist doesn't know why I'm not able to piss naturally. It could be inflammation and swelling in the bladder, as the growths were near the bottom where it necks down into the urethra. It could also be nerve damage due to the metastasis in my spine. It's hard to tell since the surgery and the first radiation treatment were so close together. We'll re-evaluate the situation next week after finishing the radiation treatments, and if needed there are less extreme options than a full catheter.
While this was going on I had three radiation treatments. In addition, the third front of this cancer war is the hormone therapy injection I was given a little over two weeks ago, which should be starting to take effect now. All of these things can cause side effects such as fatigue and nausea, so it's no surprise I've spent most of the last couple days laying around on the couch or in bed feeling sick to my stomach. That is, when I'm not in a complete panic about my ability to urinate.
Which brings us to today. Much of the past week has gone by in a haze of stress or napping (sometimes aided by a prescription opioid). Today I've recovered enough to occasionally get off the couch for 30 to 60 minutes at a time, including writing this post. The emotions are starting to hit me.
Last Tuesday, before this latest skirmish in the cancer war, I was able to go on a 2 mile walk and haul a load of trash and recyclables to the town dump. I could go out to a restaurant for lunch. I could travel to Vermont and at least enjoy the scenery and maybe even an easy stroll by the pond.
Today, I've got a catheter hanging out of my wanker that tends to chafe and irritate me with any significant movement. My back pain seems to be flaring up as a result of the radiation treatments. I sleep for about 12 hours a day, lay around most of the other 12, have little interest in food, and generally worry about whether the current catheter will continue to function.
At some level, this is all perfectly expected after what I've been through in the past week. But on the other hand, I still have two more radiation treatments, then a short break, and then chemo begins. The though that I'll be stuck in this loop of sleeping, pain, and nausea for weeks scares me deeply.
As the saying goes "If you're going through hell, keep going", and I'm clinging desperately to the hope that eventually I will emerge on the other side. It's just that after a week where every light at the end of the tunnel seems to be an oncoming train, it's very difficult.
As always, the silver lining is the love and support I have received. Please continue sending the thoughts, prayers, hugs, care packages, well wishes, whatever you can do. It seems I'll need them in increasing amounts in the coming weeks.
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