I’m struggling today. The moment is not being seized. Affairs are not being put in order. My ovaries hurt.
Let me back up a bit. Last week I had the second injection of Xgeva, that magical substance derived from genetically engineered hamster ovaries. I’m blaming it for my recent flare of pain, though evidence is mostly circumstantial.
I’ve been reading about other men’s experiences on an online prostate cancer forum. It’s very helpful to see what other patients have had for treatments, and their various results and side effects. Yes, some other people have had flares of joint pain during treatment, and later scans have shown that the treatment worked very well. It’s some amount of consolation that there may be a very positive outcome for the suffering I’m going through at the moment. But…
… the online forum can be very worrying. Many men don’t do as well as I do. Some start off doing well, but then the treatment stops working, and the treatments after that are disappointing. Every few days there’s a post about another member who has finally lost his battle. It all paints a picture of a terrible disease that can be managed for a while, sometimes decades, but inevitably will turn against you.
So on that happy note, let’s get back to my pain. It seems my sacroiliac joint is angry. I didn’t even know I had this joint until yesterday, but when I pointed to where it hurt the nurse practitioner mentioned it, and then a follow-up with Dr. Google provided more information.
I thought my hip bone was one solid bone all the way from my hip to my right hip. Nope. There’s actually a bone on either side referred to as iliums, and one in the middle called the sacrum which supports the spine and upper body. The sacrum is joined to the iliums via the sacroiliac joints. This explains so much! Like most joint issues, once it gets moving and loosened up the pain goes away, which explains why running usually doesn’t hurt. On the other hand, not moving the joint and putting it in an odd position will hurt, which explains why sitting can hurt depending on the chair and my posture.
So it seems reasonable to blame the recent bout of pain on a combination of treatment and overuse due to too much activity. It was worth it though, as I greatly enjoyed being able to split firewood again. But today I’m spending a lot of time on the couch because tonight is indoor track night and I’ll be giving it more abuse then.
Unfortunately, laying around gives me too much time to think about tomorrow. It’s been about three months since that horror show of surgery and its aftermath that removed a tumor from my bladder. Three months means it’s time for a follow-up cystoscopy to see if the cancer has returned. This is a highly unpleasant procedure involving passing a video camera up the urethra and into the bladder. It supposedly is a very small camera, but it feels like one of those full size cameras from TV studios back in the 50s. You know the ones that are about 5 feet tall and get wheeled around the stage? That’s what it feels like going in, wheels and all.
So I’m understandably anxious about the procedure itself. I’m even more anxious that they might find something. I don’t know if it’s a rational fear or not. I do know that back in October I had two cancer diagnoses in one month. It was an awful time when my worst fears weren’t even close to how bad reality actually was. Now I’m worrying about the possibility of another surgery while in the middle of chemo. Let’s hope that fate doesn’t try to exceed my expectations again!
Wednesday, January 30, 2019
Thursday, January 24, 2019
Day 98, All Aboard the Pineapple Express
It is said that laughter is the best medicine. Therefore, any substance that has a reputation for causing “the giggles” must be great medicine, am I right? This was the epiphany I recently had regarding medical marijuana.
My first attempts at using medical marijuana were with edibles, with mixed results. While there are several reasons specific to edibles for this, the bigger reason was that I was buying into the hype that it’s possible to get medicinal benefits without getting stoned. While this is somewhat true, for me at least it’s much easier to see benefit if I’m willing to endure some inebriation.
I’ve had much better success after swapping edibles for vaping, and fully deciding to embrace the recreational aspect of marijuana. Using recreationally is actually fun. Who knew recreation could be enjoyable? My favorite variety so far is called “Pineapple Express”. All aboard!
Being a complete neophyte, it took several tries to figure out vaping. At first I was too tentative and didn’t inhale enough to get a noticeable effect. On the second try I took a deep draw and ended up coughing for the next 20 minutes. Are we having recreation yet? Third time's the charm.
The technique that seems to work is to inhale a partial lungful in about 4 or 5 seconds, then continue inhaling only fresh air to finish filling the lungs which causes enough dilution to avoid coughing (mostly). Hold for a few seconds, then exhale. Repeat at several minute intervals until the desired effect is achieved.
First hit…, no effect. Second hit…, maybe something. Third hit… my brain has just left my body. Awesome!
The best way I can describe the experience (for the few of my readers that haven’t already tried this in college) is that marijuana alters how you experience the world. Pain is no longer a personal experience, I’m aware of it but not suffering from it. Food tastes better. Music sounds better. I’m content to stay put and don’t have to get up and respond to every thought that flitters into my head.
A short while ago I was experiencing the side effects of chemotherapy, mostly digestive issues and fatigue. Even with medication to relieve symptoms, it’s still a recipe for spending significant time on the couch resting. This leads to feeling sorry for myself as I’m quite aware of all the things I can’t do at the moment due to my condition. Such negative thinking causes stress which impairs recovery.
Several hits later, and the digestive issues are noticeably better. Pain may or may not be improved, but it doesn’t bother me anymore. I put on headphones and listen to music. To say it sounds better doesn’t capture the effect. It becomes very easy to close my eyes and imagine that I’m at a concert. I can easily visualize the band on stage (sometimes as a cartoon, but we’ll ignore such details for the moment), the crowd dancing, and the general party atmosphere. My body might be relaxing on the couch, but my mind is getting out and enjoying life.
Have you ever had a really good dream at night that left you in a good mood for most of the next day? That’s what this experience was like. Long after sobering up I still have a happy memory of the experience, and part of that may be a product of honestly being able to relax and rest.
Several hours after the effects wear off I sometimes find myself somewhat ambitious and getting involved in things. Life slowly changes from a perpetual purgatory of side effects to alternating between periods of true relaxation and periods of productivity and activity.
Being able to think positive thoughts in adverse circumstances is a habit as much as it is a skill. Psychoactive substances (marijuana, benzodiazepines, antidepressants, etc.) can be thought of as training wheels on a bicycle. It makes it easier to think positively at first, and as the habit is developed it becomes easier to repeat in the future. At a physical level, it’s actively forming well worn paths in the brain that become easier to follow each time.
Beyond such practical explanations, given that medication for many serious conditions (not just cancer) have life altering side effects, if there were a drug whose side effects include euphoria and giggling, wouldn’t you *want* those side effects?
Wait, I just had a great idea! You have to hear this. If marijuana can make headphones feel like going to a concert, it must make actually going to a concert seem that much better! I can’t believe nobody ever thought of getting stoned at a concert before. Somebody has to try that!
My first attempts at using medical marijuana were with edibles, with mixed results. While there are several reasons specific to edibles for this, the bigger reason was that I was buying into the hype that it’s possible to get medicinal benefits without getting stoned. While this is somewhat true, for me at least it’s much easier to see benefit if I’m willing to endure some inebriation.
I’ve had much better success after swapping edibles for vaping, and fully deciding to embrace the recreational aspect of marijuana. Using recreationally is actually fun. Who knew recreation could be enjoyable? My favorite variety so far is called “Pineapple Express”. All aboard!
Being a complete neophyte, it took several tries to figure out vaping. At first I was too tentative and didn’t inhale enough to get a noticeable effect. On the second try I took a deep draw and ended up coughing for the next 20 minutes. Are we having recreation yet? Third time's the charm.
The technique that seems to work is to inhale a partial lungful in about 4 or 5 seconds, then continue inhaling only fresh air to finish filling the lungs which causes enough dilution to avoid coughing (mostly). Hold for a few seconds, then exhale. Repeat at several minute intervals until the desired effect is achieved.
First hit…, no effect. Second hit…, maybe something. Third hit… my brain has just left my body. Awesome!
The best way I can describe the experience (for the few of my readers that haven’t already tried this in college) is that marijuana alters how you experience the world. Pain is no longer a personal experience, I’m aware of it but not suffering from it. Food tastes better. Music sounds better. I’m content to stay put and don’t have to get up and respond to every thought that flitters into my head.
A short while ago I was experiencing the side effects of chemotherapy, mostly digestive issues and fatigue. Even with medication to relieve symptoms, it’s still a recipe for spending significant time on the couch resting. This leads to feeling sorry for myself as I’m quite aware of all the things I can’t do at the moment due to my condition. Such negative thinking causes stress which impairs recovery.
Several hits later, and the digestive issues are noticeably better. Pain may or may not be improved, but it doesn’t bother me anymore. I put on headphones and listen to music. To say it sounds better doesn’t capture the effect. It becomes very easy to close my eyes and imagine that I’m at a concert. I can easily visualize the band on stage (sometimes as a cartoon, but we’ll ignore such details for the moment), the crowd dancing, and the general party atmosphere. My body might be relaxing on the couch, but my mind is getting out and enjoying life.
Have you ever had a really good dream at night that left you in a good mood for most of the next day? That’s what this experience was like. Long after sobering up I still have a happy memory of the experience, and part of that may be a product of honestly being able to relax and rest.
Several hours after the effects wear off I sometimes find myself somewhat ambitious and getting involved in things. Life slowly changes from a perpetual purgatory of side effects to alternating between periods of true relaxation and periods of productivity and activity.
Being able to think positive thoughts in adverse circumstances is a habit as much as it is a skill. Psychoactive substances (marijuana, benzodiazepines, antidepressants, etc.) can be thought of as training wheels on a bicycle. It makes it easier to think positively at first, and as the habit is developed it becomes easier to repeat in the future. At a physical level, it’s actively forming well worn paths in the brain that become easier to follow each time.
Beyond such practical explanations, given that medication for many serious conditions (not just cancer) have life altering side effects, if there were a drug whose side effects include euphoria and giggling, wouldn’t you *want* those side effects?
Wait, I just had a great idea! You have to hear this. If marijuana can make headphones feel like going to a concert, it must make actually going to a concert seem that much better! I can’t believe nobody ever thought of getting stoned at a concert before. Somebody has to try that!
Sunday, January 20, 2019
Day 94, Into The Storm
Today is the day I’ve worried about for some time: A snow storm while in the middle of the side effects storm that follows a chemo treatment. But it’s also the day I’ve discovered the first superhero power brought forth by my treatment: sheer stubbornness. My runner friends will recognize this as the ability to ignore the body’s protestations and keep going.
Let me whine about chemo for a few paragraphs, as my previous post didn’t capture the full extent of the experience. For starters, I forgot all about chemo brain, which ironically is itself probably a symptom of chemo brain.. It’s simply difficult to think straight sometimes. Chemo attacks the nerve cells, as evidenced by the tingingling in my fingers and toes. If it’s attacking the peripheral nerves, it’s probably having an effect on the brain cells too.
Combine chemo brain with a lack of testosterone caused by hormone treatment, sprinkle in a bit of prednisone, and you get a tendency towards moody and anxious. Add in the vague sense of physical malaise and it exacerbates the problem.
My throat hurts. My hair continues to thin. My skin is extremely dry. My toenails hurt. A small portion of patients have been known to lose their nails, but based on an unscientific sampling, it’s not any more frequent than happens to marathon runners.
What’s missing from all this whining is complaints of serious muscle or bone pain, or a tendency to sleep all day. Other than a bit of anemia which limits my power levels, I’m actually pretty capable of some physical activity.
Which brings me to the snow storm raging outside. The scene opens with a close up of the rope starter on a small engine. A hand pulls the rope and the engine sputters to life. The camera moves back and reveals a snow thrower. The hero is going out into the storm and cleaning up the snow!
Shouting the battle cry “USE IT OR LOSE IT!”, he wields his trusty snow thrower against the evil forces of mother nature.
But while the power equipment can deal with the bulk of the snow, at some point you need to break out a shovel to do the detail work:
Ultimately this epic battle ended in a draw of sorts. The snow has changed to that awful mix of snow, sleet, and freezing rain. While i did get the driveway mostly clear, it didn’t leave me with the “I could do this all day” feeling and the cars still need to be dug out after the storm ends. My bowels are definitely irritated, though I suspect they’d be largely that way without the physical effort.
All this leaves me with some significant unanswered questions: Is “Stubborn Man” a good superhero name? Or should I wait until more powers become apparent? I’m still working on my dark humor superpower. What costume does a stubborn man wear when going into battle? I’m thinking some bizarre cross of the usual superhero Spandex with the old man pants hiked up to the armpits. I’d love your input as I work on my alter ego. Help me write my origin story!
Let me whine about chemo for a few paragraphs, as my previous post didn’t capture the full extent of the experience. For starters, I forgot all about chemo brain, which ironically is itself probably a symptom of chemo brain.. It’s simply difficult to think straight sometimes. Chemo attacks the nerve cells, as evidenced by the tingingling in my fingers and toes. If it’s attacking the peripheral nerves, it’s probably having an effect on the brain cells too.
Combine chemo brain with a lack of testosterone caused by hormone treatment, sprinkle in a bit of prednisone, and you get a tendency towards moody and anxious. Add in the vague sense of physical malaise and it exacerbates the problem.
My throat hurts. My hair continues to thin. My skin is extremely dry. My toenails hurt. A small portion of patients have been known to lose their nails, but based on an unscientific sampling, it’s not any more frequent than happens to marathon runners.
What’s missing from all this whining is complaints of serious muscle or bone pain, or a tendency to sleep all day. Other than a bit of anemia which limits my power levels, I’m actually pretty capable of some physical activity.
Which brings me to the snow storm raging outside. The scene opens with a close up of the rope starter on a small engine. A hand pulls the rope and the engine sputters to life. The camera moves back and reveals a snow thrower. The hero is going out into the storm and cleaning up the snow!
Shouting the battle cry “USE IT OR LOSE IT!”, he wields his trusty snow thrower against the evil forces of mother nature.
But while the power equipment can deal with the bulk of the snow, at some point you need to break out a shovel to do the detail work:
Ultimately this epic battle ended in a draw of sorts. The snow has changed to that awful mix of snow, sleet, and freezing rain. While i did get the driveway mostly clear, it didn’t leave me with the “I could do this all day” feeling and the cars still need to be dug out after the storm ends. My bowels are definitely irritated, though I suspect they’d be largely that way without the physical effort.
All this leaves me with some significant unanswered questions: Is “Stubborn Man” a good superhero name? Or should I wait until more powers become apparent? I’m still working on my dark humor superpower. What costume does a stubborn man wear when going into battle? I’m thinking some bizarre cross of the usual superhero Spandex with the old man pants hiked up to the armpits. I’d love your input as I work on my alter ego. Help me write my origin story!
Wednesday, January 16, 2019
Day 90, The Chemo Cycle
It’s been about three months since my diagnosis, and I’m at the beginning of chemo cycle #3 of 6. These cycles are rapidly become routine. This time they were able to find a vein on the first try. My infusion started off at full speed and I had no reaction, though my face is somewhat red today, which according to my wife is the same as the other two cycles.
There isn’t much news to report. My blood numbers continue to improve, though not as dramatically as before. That’s not surprising as my PSA at 0.08 is now down to the point where the other substances the test can be sensitive to become a factor. While I still have some pain, it is more annoying than limiting, and my energy and ambition greatly improved in the last week of the previous cycle.
I’m still experimenting with the medical marijuana, and have recently tried vaping. This is a much better delivery method when learning, as effects happen much faster (a couple minutes instead of a couple hours), and go away sooner (3-ish hours versus 10-12). I’m still planning to write another MMJ post, but as I’m still learning it’s still a work in progress.
So what happens during each cycle of chemo, you ask? It starts with taking a steroid called dexamethasone the night before, and then two more pills in the morning before going to the oncologist’s office. This is intended to suppress an allergic reaction to the chemotherapy drug. At the office I get a blood test. If that shows that my counts have improved sufficiently after the previous treatment I get the next treatment.
The treatment consists of two parts: A pre-treatment consisting of more dexamethasone and benadryl, again to prevent reactions to the drug, as well as anti-nausea and anti-acid meds to prevent side effects. That takes about 15 minutes, and after that it’s about an hour to get the docetaxel (the chemo drug).
Initially, I’m tired and groggy from the benadryl. As that wears off, the dexamethasone takes over, which is stimulating. Yesterday I came home, took a nap, then couldn’t get to sleep until about 1am, after dosing myself with melatonin. Did I mention I’ve turned into a human chemistry set?
Initial side effects for me include a bit of constipation (from the dexamethasone), lost of taste and appetite, a sore throat and mouth, and usually vague discomfort throughout the digestive tract and lunch, all from the docetaxel affecting fast-growing normal cells. On the bright side, the MMJ seems to help greatly with appetite and taste, as lunch was much more enjoyable than breakfast today.
I’ll go running at the indoor track tonight. My heart rate will probably be much higher than usual (see “I’m a chemistry set,” above), and my lungs may not let me go 100%, but my body generally won’t have any trouble. It won’t take much effort to get there either, as it’s a long developed habit and that trumps what little fatigue I may be feeling today.
In a couple more days the dexamethasone will be out of my system and I’ll start to feel the side effects directly. Docetaxel generally causes a bit of diarrhea. As I usually take some milk of magnesia to counteract the dexamethasone, this transition can be a little dramatic. Perhaps I should have mentioned not to eat while reading this post?
Without the stimulating effects of the dexamethasone, fatigue hits full force. Also I’m prone to a bit of nausea (easily controlled with medication so far) and acid reflux around this time. It’s generally a good time to lay around on the couch, though I do try to get out for a walk if possible. This is also the time my immune system goes offline, which probably adds to the fatigue.
Once that’s out of the way, I’m pretty good for about a week, but don’t have full power. I’m somewhat anemic by this point, and my lungs are at their worst for the cycle, so my running pace falls off drastically to around brisk walk territory. At lesser efforts I’m pretty good and so can do most things, only slower than normal.
Near the end of the second week my immune system and blood counts start returning, and that can lead to another round of fatigue, malaise, and general aches and pains. After that passes, I’m pretty much good until the start of the next cycle, with improving energy and lower heart rates as the anemia eases.
So that’s a cycle. It’s a great sign that each cycle is getting easier, but that may not last. My initial improvement may be partly caused by my continued recovery from the radiation treatments a couple months ago. To counter that, my blood counts aren’t completely recovering by the end of the cycle, and that as well as other chemo caused damage to normal tissue which doesn’t fully recover all starts to accumulate as the cycles add up.
But, I only have three more cycles after this one, so even if the later ones are a bit tougher it won’t be long before I have some extended recovery time. Also, as I become more familiar with the MMJ I may be able to better manage the side effects, or at least not feel as stressed about them which has to help.
There isn’t much news to report. My blood numbers continue to improve, though not as dramatically as before. That’s not surprising as my PSA at 0.08 is now down to the point where the other substances the test can be sensitive to become a factor. While I still have some pain, it is more annoying than limiting, and my energy and ambition greatly improved in the last week of the previous cycle.
I’m still experimenting with the medical marijuana, and have recently tried vaping. This is a much better delivery method when learning, as effects happen much faster (a couple minutes instead of a couple hours), and go away sooner (3-ish hours versus 10-12). I’m still planning to write another MMJ post, but as I’m still learning it’s still a work in progress.
So what happens during each cycle of chemo, you ask? It starts with taking a steroid called dexamethasone the night before, and then two more pills in the morning before going to the oncologist’s office. This is intended to suppress an allergic reaction to the chemotherapy drug. At the office I get a blood test. If that shows that my counts have improved sufficiently after the previous treatment I get the next treatment.
The treatment consists of two parts: A pre-treatment consisting of more dexamethasone and benadryl, again to prevent reactions to the drug, as well as anti-nausea and anti-acid meds to prevent side effects. That takes about 15 minutes, and after that it’s about an hour to get the docetaxel (the chemo drug).
Initially, I’m tired and groggy from the benadryl. As that wears off, the dexamethasone takes over, which is stimulating. Yesterday I came home, took a nap, then couldn’t get to sleep until about 1am, after dosing myself with melatonin. Did I mention I’ve turned into a human chemistry set?
Initial side effects for me include a bit of constipation (from the dexamethasone), lost of taste and appetite, a sore throat and mouth, and usually vague discomfort throughout the digestive tract and lunch, all from the docetaxel affecting fast-growing normal cells. On the bright side, the MMJ seems to help greatly with appetite and taste, as lunch was much more enjoyable than breakfast today.
I’ll go running at the indoor track tonight. My heart rate will probably be much higher than usual (see “I’m a chemistry set,” above), and my lungs may not let me go 100%, but my body generally won’t have any trouble. It won’t take much effort to get there either, as it’s a long developed habit and that trumps what little fatigue I may be feeling today.
In a couple more days the dexamethasone will be out of my system and I’ll start to feel the side effects directly. Docetaxel generally causes a bit of diarrhea. As I usually take some milk of magnesia to counteract the dexamethasone, this transition can be a little dramatic. Perhaps I should have mentioned not to eat while reading this post?
Without the stimulating effects of the dexamethasone, fatigue hits full force. Also I’m prone to a bit of nausea (easily controlled with medication so far) and acid reflux around this time. It’s generally a good time to lay around on the couch, though I do try to get out for a walk if possible. This is also the time my immune system goes offline, which probably adds to the fatigue.
Once that’s out of the way, I’m pretty good for about a week, but don’t have full power. I’m somewhat anemic by this point, and my lungs are at their worst for the cycle, so my running pace falls off drastically to around brisk walk territory. At lesser efforts I’m pretty good and so can do most things, only slower than normal.
Near the end of the second week my immune system and blood counts start returning, and that can lead to another round of fatigue, malaise, and general aches and pains. After that passes, I’m pretty much good until the start of the next cycle, with improving energy and lower heart rates as the anemia eases.
So that’s a cycle. It’s a great sign that each cycle is getting easier, but that may not last. My initial improvement may be partly caused by my continued recovery from the radiation treatments a couple months ago. To counter that, my blood counts aren’t completely recovering by the end of the cycle, and that as well as other chemo caused damage to normal tissue which doesn’t fully recover all starts to accumulate as the cycles add up.
But, I only have three more cycles after this one, so even if the later ones are a bit tougher it won’t be long before I have some extended recovery time. Also, as I become more familiar with the MMJ I may be able to better manage the side effects, or at least not feel as stressed about them which has to help.
Thursday, January 10, 2019
Day 84, The Fight Goes On
I’ve struggled to write this blog post. More accurately, I’ve written several possible posts and haven’t posted them because they haven’t had the right attitude. This one starts out on a bit of a down note, but will be more optimistic and humorous near the end. I promise.
While my blood work continues to show signs of progress, there hasn’t been corresponding progress in how I feel. Which isn’t to say there haven’t been changes in how I feel. Cancer treatment so far has been an unending series of changes. Side effects replace symptoms. Mood and energy levels change as treatments change and as blood counts roller coaster up and down with each chemo cycle. With such changes from day to day, it’s really hard to pick out subtle trends of progress. At the moment, I’m basically in cancer purgatory.
I’m reading as much as possible about my disease and have joined a online forum for advanced prostate cancer. Learning is a double edged sword. I’m given hope by the success stories and learning about the available treatments and new treatments that are in the pipeline and will be available in the years to come. On the other hand, I’m learning just how quickly cancer can return, and there are regular posts on the forum about members who have lost their war.
The good news is that I seem to be having a better than normal response to treatment so far. The bad news is that my starting point is very advanced. I recently found out the results of my whole body bone density scan. There’s signs the cancer has spread as far as my upper arms. That is a lot of cancer to fight back.
I’ll be undergoing chemotherapy for another three months. When chemo is done, another drug will be added to my cocktail and I’ll continue on that treatment regimen indefinitely. By this spring the side effects should finally stabilize and I hope to feel some definite progress and be able to ramp up my activity levels. If the treatments continue to work into the summer it will be time to consider returning to work.
To keep this post somewhat positive, I won’t go into detail about what could go wrong, but will point out the use of “should”, “hope”, and “if” in the previous paragraph.
Okay, time for a bit of humor. I believe I’m getting some side effects from Xgeva, which you may remember from a previous post is the drug produced by genetically modified hamster ovaries. This brings me to one of my favorite Bart Simpson quotes, “Ooooh, my ovaries!”. It’s an excuse I intend to take advantage of in the future:
https://www.youtube.com/watch?v=u7LJwZ7uRno&t=40
And now the positive attitude (you may notice that I’m trying to shape that attitude as I write this). People regularly ask me how I’m doing. I’ve always struggled to answer this even before the cancer diagnosis. Life is never perfect. I’m finally learning to look past the imperfections and see that I’m still on the proverbial sunny side of the sod and can still get out to socialize and exercise. In the context of advanced cancer, I’m doing fantastic. I find it strange that other people can see this better than I can and get very enthusiastic about it:
I can still run a mile without stopping. I can still sprint quite fast for a 51 year old. I have full control over my bladder. I’m still able to shovel snow, carry firewood, and do my own oil changes. In short, I can still do many things that many of my peers without out cancer can’t do. Heck, I’m undergoing chemo and still have more hair than many of my peers (though I wouldn’t recommend pointing this out to them, don’t ask me how I know).
I’m choosing to focus on the process of fighting the cancer and what I can still do. To focus on the results and what I can’t do would set me up for a crisis with each setback and complication. The fight is expected to last the rest of my life, which hopefully will be decades. There will be setbacks and complications in that time, but the only failure is if I give up the fight.
While my blood work continues to show signs of progress, there hasn’t been corresponding progress in how I feel. Which isn’t to say there haven’t been changes in how I feel. Cancer treatment so far has been an unending series of changes. Side effects replace symptoms. Mood and energy levels change as treatments change and as blood counts roller coaster up and down with each chemo cycle. With such changes from day to day, it’s really hard to pick out subtle trends of progress. At the moment, I’m basically in cancer purgatory.
I’m reading as much as possible about my disease and have joined a online forum for advanced prostate cancer. Learning is a double edged sword. I’m given hope by the success stories and learning about the available treatments and new treatments that are in the pipeline and will be available in the years to come. On the other hand, I’m learning just how quickly cancer can return, and there are regular posts on the forum about members who have lost their war.
The good news is that I seem to be having a better than normal response to treatment so far. The bad news is that my starting point is very advanced. I recently found out the results of my whole body bone density scan. There’s signs the cancer has spread as far as my upper arms. That is a lot of cancer to fight back.
I’ll be undergoing chemotherapy for another three months. When chemo is done, another drug will be added to my cocktail and I’ll continue on that treatment regimen indefinitely. By this spring the side effects should finally stabilize and I hope to feel some definite progress and be able to ramp up my activity levels. If the treatments continue to work into the summer it will be time to consider returning to work.
To keep this post somewhat positive, I won’t go into detail about what could go wrong, but will point out the use of “should”, “hope”, and “if” in the previous paragraph.
Okay, time for a bit of humor. I believe I’m getting some side effects from Xgeva, which you may remember from a previous post is the drug produced by genetically modified hamster ovaries. This brings me to one of my favorite Bart Simpson quotes, “Ooooh, my ovaries!”. It’s an excuse I intend to take advantage of in the future:
https://www.youtube.com/watch?v=u7LJwZ7uRno&t=40
And now the positive attitude (you may notice that I’m trying to shape that attitude as I write this). People regularly ask me how I’m doing. I’ve always struggled to answer this even before the cancer diagnosis. Life is never perfect. I’m finally learning to look past the imperfections and see that I’m still on the proverbial sunny side of the sod and can still get out to socialize and exercise. In the context of advanced cancer, I’m doing fantastic. I find it strange that other people can see this better than I can and get very enthusiastic about it:
I can still run a mile without stopping. I can still sprint quite fast for a 51 year old. I have full control over my bladder. I’m still able to shovel snow, carry firewood, and do my own oil changes. In short, I can still do many things that many of my peers without out cancer can’t do. Heck, I’m undergoing chemo and still have more hair than many of my peers (though I wouldn’t recommend pointing this out to them, don’t ask me how I know).
I’m choosing to focus on the process of fighting the cancer and what I can still do. To focus on the results and what I can’t do would set me up for a crisis with each setback and complication. The fight is expected to last the rest of my life, which hopefully will be decades. There will be setbacks and complications in that time, but the only failure is if I give up the fight.
Tuesday, January 1, 2019
Day 75, Chemo Round 2
In my continuing quest to turn cancer treatment into a superhero origin story, I have a new ally: “genetically engineered hamster ovaries”. You can’t make this stuff up. Let me explain.
On the day after Christmas I got my second infusion of chemotherapy. Not content to fill my veins with a cytotoxic substance, my oncologist also gave me a shot of another drug with the unpronounceable name Xgeva. This is intended to “inhibit osteoclastic bone resorption”, which is fancy talk for interfering with the bone damage process caused by the cancer. Of course, like all drugs put into my system I had to search the internet for more information.
The internet tells me that it’s a monoclonal antibody “produced in genetically engineered mammalian (Chinese hamster ovary) cells”. Most likely, that means genetically engineered cells are grown in a petri dish, but I prefer to imagine mutant hamsters running around in a cage and oozing this substance out their furry follicles. Periodically, scientists in lab coats would sheer the hamsters like tiny sheep and extract the Xgeva from the harvested fur. When injected into me at a later date, the effect should be remarkably similar to adamantium added to the bones of Wolverine.
In practice, the effect is yet another source of fatigue and a temporary increase in pain. It’s truly amazing how every cancer treatment seems to list fatigue as the most common side effect. It also doesn’t help that I still have the remnants of a chest cold caught just before Christmas.
Generally speaking, chemo round 2 has been pretty similar to round 1, with the exception of no reaction during the infusion, and no signs of phlebitis in the week afterwards. Also, since cutting off the ponytail my hair loss has been reduced to gradual thinning rather than losing huge handfuls of clumped hair.
But the fatigue is crushing at times. After sleeping for 10 hours (or rather, attempting to sleep for that amount of time, with mixed success in actually sleeping), I wake up on a sunny morning and feel physically and spiritually exhausted. I usually drag myself out of bed around 8:30 am so I can have breakfast and get my morning dose of prednisone in me. Then I usually hang out on the couch watching TV and/or surfing the internet and playing mobile games. It’s not a thrilling existence, but I do have my genetically engineered hamster ovaries to think about.
That said, I have gotten outside for a run or walk on six of the last seven days. That quickly adds up to covering over 10 miles in a week. In addition, many times in the evening I will become particularly fidgety and every time a commercial comes on the TV I get off the couch to make herbal tea, or put something away, or just get a tissue to blow my nose. I’m not terribly good at acting bedridden all day long even when suffering fatigue.
I am very eager to see more progress in my energy and pain levels. It’s particularly annoying since a couple weeks ago I was seeing meaningful progress and was beginning to plan what to do with my energy, enthusiasm, and newfound ability to move about. But of course the side effects resurfaced, I caught a cold, and now have the side effects from round 2, so there hasn’t been any notable improvement in a couple weeks and that is frustrating. The side effects for round 2 should be ebbing over the next few days, so hopefully I can set a new high water mark for feeling good.
On the day after Christmas I got my second infusion of chemotherapy. Not content to fill my veins with a cytotoxic substance, my oncologist also gave me a shot of another drug with the unpronounceable name Xgeva. This is intended to “inhibit osteoclastic bone resorption”, which is fancy talk for interfering with the bone damage process caused by the cancer. Of course, like all drugs put into my system I had to search the internet for more information.
The internet tells me that it’s a monoclonal antibody “produced in genetically engineered mammalian (Chinese hamster ovary) cells”. Most likely, that means genetically engineered cells are grown in a petri dish, but I prefer to imagine mutant hamsters running around in a cage and oozing this substance out their furry follicles. Periodically, scientists in lab coats would sheer the hamsters like tiny sheep and extract the Xgeva from the harvested fur. When injected into me at a later date, the effect should be remarkably similar to adamantium added to the bones of Wolverine.
In practice, the effect is yet another source of fatigue and a temporary increase in pain. It’s truly amazing how every cancer treatment seems to list fatigue as the most common side effect. It also doesn’t help that I still have the remnants of a chest cold caught just before Christmas.
Generally speaking, chemo round 2 has been pretty similar to round 1, with the exception of no reaction during the infusion, and no signs of phlebitis in the week afterwards. Also, since cutting off the ponytail my hair loss has been reduced to gradual thinning rather than losing huge handfuls of clumped hair.
But the fatigue is crushing at times. After sleeping for 10 hours (or rather, attempting to sleep for that amount of time, with mixed success in actually sleeping), I wake up on a sunny morning and feel physically and spiritually exhausted. I usually drag myself out of bed around 8:30 am so I can have breakfast and get my morning dose of prednisone in me. Then I usually hang out on the couch watching TV and/or surfing the internet and playing mobile games. It’s not a thrilling existence, but I do have my genetically engineered hamster ovaries to think about.
That said, I have gotten outside for a run or walk on six of the last seven days. That quickly adds up to covering over 10 miles in a week. In addition, many times in the evening I will become particularly fidgety and every time a commercial comes on the TV I get off the couch to make herbal tea, or put something away, or just get a tissue to blow my nose. I’m not terribly good at acting bedridden all day long even when suffering fatigue.
I am very eager to see more progress in my energy and pain levels. It’s particularly annoying since a couple weeks ago I was seeing meaningful progress and was beginning to plan what to do with my energy, enthusiasm, and newfound ability to move about. But of course the side effects resurfaced, I caught a cold, and now have the side effects from round 2, so there hasn’t been any notable improvement in a couple weeks and that is frustrating. The side effects for round 2 should be ebbing over the next few days, so hopefully I can set a new high water mark for feeling good.
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