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.
Tuesday, January 1, 2019
Thursday, December 27, 2018
Day 70, Running With Cancer
Just a brief bit of news before diving into the topic for today: I had my second chemo infusion yesterday and it went much smoother than the first one. The requisite blood test showed that my PSA is now down to 0.19, and my alkaline phosphatase level continues to drop. Most patients do respond to treatment at first but not everybody gets their PSA under 2.0. Under 0.1 would be even better and is about the limit of the current test as it starts measuring other substances at extremely low levels. Such low levels don’t mean I’m cured, it just means the cancer is under control and very likely not progressing. This is the time my tumors will shrink if they’re going to do that.
About 5 hours after completing the second round of chemo, I went to the indoor track. I felt much better than expected, and attribute that to the drug not having had much time to show its effects. I even attempted to do the stair drill which was the workout of the week, which does involves sprinting. The first couple were really fun, as I enjoy running FAST. The third one caused my lungs to hurt afterwards. The fourth caused my lungs and throat to hurt. That pain would be the drug affecting the linings of my lungs, mouth, and throat. It basically affects the entire digestive tract, lungs, skin, hair follicles, anything that has fast dividing epithelial cells as a barrier between the body and the outside world.
Given that I would have been happy with walking around the track for a bit, I’m ecstatic to get away with a bit of exuberance. Now let me explain why running, or any exercise, is of vital importance when you have cancer and are dealing with cancer treatments.
Exercise is what stimulates growth in the body. It builds muscle. It strengthens bone. It spurs the production of more blood cells. It does a lot of other things but what I’ve already listed is in direct opposition to the effects of cancer and its treatment. My cancer has spread to the bones and was damaging them. Weight loss from treatment is causing muscle loss. Radiation and chemo drastically reduce blood cell counts.
If the blood cells don’t recover, treatment is put on hold giving cancer a chance to bounce back. During my treatment yesterday I got talking to another patient who had her treatment delayed by a week due to low blood cell counts. My counts had fully recovered before my second treatment. Dare I say they recovered so well they may have been higher than I’m used to seeing before I had cancer, though I haven’t dug out my old blood tests to be sure.
Another woman was talking about how she has to climb three steps to get into her apartment building, then another five steps to get into her apartment, and after that amount of exertion she lays down on the couch for an hour and a half. Compare that to me complaining about brief lung pain after sprinting across a basketball court then running up the stairs to the balcony track above.
To be fair, I’m much younger than both of these women, and can fairly guess that I started with much more physical conditioning in reserve. This past summer I would go out for three hour explorations in Vermont involving running and walking on roads and running and hiking on abandoned roads and trails in the woods. I found a number of abandoned houses, and more surprisingly, structures that weren’t abandoned more than a mile from any maintained road.
I’d cover about 10 miles on these journeys. I also spent time clearing downed trees and making new trails on our property, as well as cutting, splitting and filling our wood shed with over a cord of firewood. And of course, this was when I was working full time which also involved commuting for 12 hours a week when you include Massachusetts traffic.
Using that as a reference point, I see nothing spectacular about going for a three mile run while on leave from my job. I have ample time to rest and recover when not going to appointments. I spend significant time now trying to learn as much as possible about my disease and what options are available should the cancer adapt to the initial treatments and begin advancing again.
On the other hand, if your references for “cancer patient” are the relatively frail people I see at my chemo treatments, then yes, getting off the couch and doing any activity is an amazing accomplishment. I personally am keenly aware of how cancer has slowed me down and reduced my activity, and how chemotherapy causes even further reductions. Happily, the lesson from my first round of chemo is that by the end of the third week I seem to be back to about where I was before it started, so hopefully the effects won’t accumulate with each round.
And let me stress the importance of being a habitual exerciser before some major health crisis strikes. Many health issues can cause you to become deconditioned, to lose muscle mass, and generally place stressful burdens on the body as it fights the disease and tries to heal. Starting from a point of decent physical condition means you have more in reserve, and can maintain a better quality of life during your illness. It doesn’t have to be running. Anything that gets you active, uses more than 50% of your muscle strength, burns a bunch of calories and gets your heart rate up really high will help. For a symbiotic effect, eat healthier too (always my weak point). Get out there and use your body as much as you safely can!
Besides the direct health benefits already mentioned, running is a great way of coping with the stress and uncertainty of life, particularly when you have a deadly disease. I’ve also built a social life around running, and runners are some of the nicest and most positive people you could ask for. Despite the very low cure rate for advanced prostate cancer, everybody has me focused on that possibility, and given the progress I’m making so far with treatment that’s not as outrageous as it may sound.
About 5 hours after completing the second round of chemo, I went to the indoor track. I felt much better than expected, and attribute that to the drug not having had much time to show its effects. I even attempted to do the stair drill which was the workout of the week, which does involves sprinting. The first couple were really fun, as I enjoy running FAST. The third one caused my lungs to hurt afterwards. The fourth caused my lungs and throat to hurt. That pain would be the drug affecting the linings of my lungs, mouth, and throat. It basically affects the entire digestive tract, lungs, skin, hair follicles, anything that has fast dividing epithelial cells as a barrier between the body and the outside world.
Given that I would have been happy with walking around the track for a bit, I’m ecstatic to get away with a bit of exuberance. Now let me explain why running, or any exercise, is of vital importance when you have cancer and are dealing with cancer treatments.
Exercise is what stimulates growth in the body. It builds muscle. It strengthens bone. It spurs the production of more blood cells. It does a lot of other things but what I’ve already listed is in direct opposition to the effects of cancer and its treatment. My cancer has spread to the bones and was damaging them. Weight loss from treatment is causing muscle loss. Radiation and chemo drastically reduce blood cell counts.
If the blood cells don’t recover, treatment is put on hold giving cancer a chance to bounce back. During my treatment yesterday I got talking to another patient who had her treatment delayed by a week due to low blood cell counts. My counts had fully recovered before my second treatment. Dare I say they recovered so well they may have been higher than I’m used to seeing before I had cancer, though I haven’t dug out my old blood tests to be sure.
Another woman was talking about how she has to climb three steps to get into her apartment building, then another five steps to get into her apartment, and after that amount of exertion she lays down on the couch for an hour and a half. Compare that to me complaining about brief lung pain after sprinting across a basketball court then running up the stairs to the balcony track above.
To be fair, I’m much younger than both of these women, and can fairly guess that I started with much more physical conditioning in reserve. This past summer I would go out for three hour explorations in Vermont involving running and walking on roads and running and hiking on abandoned roads and trails in the woods. I found a number of abandoned houses, and more surprisingly, structures that weren’t abandoned more than a mile from any maintained road.
I’d cover about 10 miles on these journeys. I also spent time clearing downed trees and making new trails on our property, as well as cutting, splitting and filling our wood shed with over a cord of firewood. And of course, this was when I was working full time which also involved commuting for 12 hours a week when you include Massachusetts traffic.
Using that as a reference point, I see nothing spectacular about going for a three mile run while on leave from my job. I have ample time to rest and recover when not going to appointments. I spend significant time now trying to learn as much as possible about my disease and what options are available should the cancer adapt to the initial treatments and begin advancing again.
On the other hand, if your references for “cancer patient” are the relatively frail people I see at my chemo treatments, then yes, getting off the couch and doing any activity is an amazing accomplishment. I personally am keenly aware of how cancer has slowed me down and reduced my activity, and how chemotherapy causes even further reductions. Happily, the lesson from my first round of chemo is that by the end of the third week I seem to be back to about where I was before it started, so hopefully the effects won’t accumulate with each round.
And let me stress the importance of being a habitual exerciser before some major health crisis strikes. Many health issues can cause you to become deconditioned, to lose muscle mass, and generally place stressful burdens on the body as it fights the disease and tries to heal. Starting from a point of decent physical condition means you have more in reserve, and can maintain a better quality of life during your illness. It doesn’t have to be running. Anything that gets you active, uses more than 50% of your muscle strength, burns a bunch of calories and gets your heart rate up really high will help. For a symbiotic effect, eat healthier too (always my weak point). Get out there and use your body as much as you safely can!
Besides the direct health benefits already mentioned, running is a great way of coping with the stress and uncertainty of life, particularly when you have a deadly disease. I’ve also built a social life around running, and runners are some of the nicest and most positive people you could ask for. Despite the very low cure rate for advanced prostate cancer, everybody has me focused on that possibility, and given the progress I’m making so far with treatment that’s not as outrageous as it may sound.
Wednesday, December 19, 2018
Day 62, Cancer Hurts
My pain has returned in the last several days. While generally I’m able to move around okay, if I move the wrong way or sit in the wrong position, I get a pain in my hip or back. Unfortunately, sitting in the wrong position includes sitting in a car seat and holding my foot on the gas pedal.
This pain could be cancer dying a slow and torturous death at the hands of chemotherapy. It brings me some amount of consolation to think of my anthropomorphic cancer cells writhing in agony. Die bastards die.
To get a bit sciency, one of the hostile things cancer cells can do is produce prostaglandins for no reason. Prostaglandins are normally only produced when tissue is injured and produce the inflammation and pain associated with the injury. It helps bring in blood and an immune response to heal the tissue. Many pain relievers work by blocking the production of prostaglandins, which relieves pain but can also slow down the healing process.
Prostaglandin production is one of the ways cancer can cause pain. When the cancer cell is killed, all the prostaglandins in it are dumped out at once. Kill a lot of cells at the same time and inflammation and pain is the result, or so the theory goes. In the long run this is a huge benefit but in the short term it kinda sucks.
In addition to the pain, I fear my hair is starting to fall out. Detangling my ponytail has produced much more hair in my comb than I’m accustomed to. So the transformation form long haired hippy to skinhead has probably started. I’m not taking it well, my long hair has been part of my identity for longer than a decade now.
I worry that by Christmas day I’ll be a half-bald, half long haired freaky looking person. To make matters worse, I’m convinced that the hair which started growing out of my ears a few years ago will continue to be as healthy as ever. I didn’t want to worry about hair loss until it started happening and now it looks like it will happen at what is supposed to be that most wonderful time of the year. NOT! Oh well, it’s not like there are large social gatherings during the holidays while I’m trying to adjust to sudden hair loss and not feel awkward about it.
In spite of all this, my blood test numbers continue to improve. While I don’t have an updated PSA number, my liver enzymes are back to normal and my alkaline phosphatase (a marker of turnover in bone tissue, and excessive amounts can result in liver damage) is down to only double what is considered normal. This implies the bone damage is being repaired.
So I find myself in the paradoxical position where treatment appears to be working, but I feel worse. At some level, this is expected as my body has been through a lot in the past couple months, and chemotherapy is yet another insult to every system in my body. However, at an emotional level I respond to how I feel, not blood test numbers on a computer screen.
At the moment I find myself unmotivated, in a bit of pain, and mourning the impending loss of my hair. Even more distressing is that this is happening at the point in the chemo cycle when I expected to be feeling my best, as the body has a chance to recover ahead of the next cycle. This too shall pass, hopefully before the start of the next cycle but at worst sometime after all the cycles are completed about 16 weeks from now.
This pain could be cancer dying a slow and torturous death at the hands of chemotherapy. It brings me some amount of consolation to think of my anthropomorphic cancer cells writhing in agony. Die bastards die.
To get a bit sciency, one of the hostile things cancer cells can do is produce prostaglandins for no reason. Prostaglandins are normally only produced when tissue is injured and produce the inflammation and pain associated with the injury. It helps bring in blood and an immune response to heal the tissue. Many pain relievers work by blocking the production of prostaglandins, which relieves pain but can also slow down the healing process.
Prostaglandin production is one of the ways cancer can cause pain. When the cancer cell is killed, all the prostaglandins in it are dumped out at once. Kill a lot of cells at the same time and inflammation and pain is the result, or so the theory goes. In the long run this is a huge benefit but in the short term it kinda sucks.
In addition to the pain, I fear my hair is starting to fall out. Detangling my ponytail has produced much more hair in my comb than I’m accustomed to. So the transformation form long haired hippy to skinhead has probably started. I’m not taking it well, my long hair has been part of my identity for longer than a decade now.
I worry that by Christmas day I’ll be a half-bald, half long haired freaky looking person. To make matters worse, I’m convinced that the hair which started growing out of my ears a few years ago will continue to be as healthy as ever. I didn’t want to worry about hair loss until it started happening and now it looks like it will happen at what is supposed to be that most wonderful time of the year. NOT! Oh well, it’s not like there are large social gatherings during the holidays while I’m trying to adjust to sudden hair loss and not feel awkward about it.
In spite of all this, my blood test numbers continue to improve. While I don’t have an updated PSA number, my liver enzymes are back to normal and my alkaline phosphatase (a marker of turnover in bone tissue, and excessive amounts can result in liver damage) is down to only double what is considered normal. This implies the bone damage is being repaired.
So I find myself in the paradoxical position where treatment appears to be working, but I feel worse. At some level, this is expected as my body has been through a lot in the past couple months, and chemotherapy is yet another insult to every system in my body. However, at an emotional level I respond to how I feel, not blood test numbers on a computer screen.
At the moment I find myself unmotivated, in a bit of pain, and mourning the impending loss of my hair. Even more distressing is that this is happening at the point in the chemo cycle when I expected to be feeling my best, as the body has a chance to recover ahead of the next cycle. This too shall pass, hopefully before the start of the next cycle but at worst sometime after all the cycles are completed about 16 weeks from now.
Wednesday, December 12, 2018
Day 55, One Week Into Chemo
I am in extremely good spirits at the moment. Chemo treatment started a week ago, and so far it has been a cakewalk (or in my case, a cakerun/walk) compared to what I went through at the beginning of November. More good news: The blood draw just before chemo showed that my PSA is already down to 2, which implies the previous treatments have been wildly, jaw-droppingly successful.
This isn’t to say chemo hasn’t been without its challenges. The first challenge was finding a vein to infuse into. Two nurses tried four times before having success. I also had a scary reaction during the infusion and had to be given oxygen, but was able to eventually complete the treatment. The nurses said reactions like this sometimes happen when the body is first exposed to the drug, and it’s less likely to occur in future treatments.
Yesterday was my weekly follow-up appointment. We talked about various side effects such as digestive issues, being easily winded, and general malaise. I learned a new word, phlebitis, after showing off the shocking pink and swollen back of my hand where the infusion was done. Everybody in the oncology office had to see it. The was some disagreement about how rare this is with my particular drug, but no real panic. In general all signs are that I’m tolerating the treatment well, and with a few tweaks the next cycle should go better.
The oncologist is very happy with my PSA numbers, even though he can’t take any credit yet. I mentioned that such a dramatic drop seems to be exceedingly rare, based on the personal stories I’ve been reading on an online advanced prostate cancer forum. He suggested not to think too much about it, and just be happy with the result. Very good advice I’ll try to follow.
After my appointment I stopped by the office where I work for a visit. I went on a sudden and unexpected medical leave right at the time of my diagnosis. The original plan was to take a week or so off while getting diagnosed with an inflamed prostate and waiting for the antibiotics to work. Suffice to say that plan changed rather suddenly.
It felt awesome going to the office and talking with the people I work with. Everybody is very supportive and interested in my condition. Somebody even went so far as to decorate my office for the holidays.
On my good days I find myself starting to look forward to returning to work. Then I remember that today’s blood draw had virtually no white blood cells, and avoiding the bugs that seem to go around in office environments is probably a good thing for the time being. Catching a routine cold during chemo can be very dangerous, as the infection can spread much further than usual before the weakened immune system is able to respond.
I also still have many bad days and bad moments. A bad moment is when I’m getting dressed and need to stop and rest to catch my breath. Another bad moment is when acid reflux gets so bad I can only sit on the couch and whimper. Yet another is when the pain flares and it gets very uncomfortable to even sit. A bad day will have multiple bad moments, and a general theme of fatigue and malaise.
But these bad moments and days are becoming fewer. I can see progress in how much pain relief I’m taking and when. I used to wake up in the middle of the night in pain, and need to take something to get back to sleep. That evolved to sleeping through the night, but needing to take something first thing in the morning. This week I haven’t been taking anything except coffee or tea when I first wake up. Progress! And of course the oncologist is very pleased with this as well.
On a parting note, while I still have my hair, it normally takes about two weeks before hair loss starts to occur. That means there’s still a few more days to go before the ponytail death watch needs to begin. At this point I’m optimistic I might keep my hair, but most people do lose at least some.
This isn’t to say chemo hasn’t been without its challenges. The first challenge was finding a vein to infuse into. Two nurses tried four times before having success. I also had a scary reaction during the infusion and had to be given oxygen, but was able to eventually complete the treatment. The nurses said reactions like this sometimes happen when the body is first exposed to the drug, and it’s less likely to occur in future treatments.
Yesterday was my weekly follow-up appointment. We talked about various side effects such as digestive issues, being easily winded, and general malaise. I learned a new word, phlebitis, after showing off the shocking pink and swollen back of my hand where the infusion was done. Everybody in the oncology office had to see it. The was some disagreement about how rare this is with my particular drug, but no real panic. In general all signs are that I’m tolerating the treatment well, and with a few tweaks the next cycle should go better.
The oncologist is very happy with my PSA numbers, even though he can’t take any credit yet. I mentioned that such a dramatic drop seems to be exceedingly rare, based on the personal stories I’ve been reading on an online advanced prostate cancer forum. He suggested not to think too much about it, and just be happy with the result. Very good advice I’ll try to follow.
After my appointment I stopped by the office where I work for a visit. I went on a sudden and unexpected medical leave right at the time of my diagnosis. The original plan was to take a week or so off while getting diagnosed with an inflamed prostate and waiting for the antibiotics to work. Suffice to say that plan changed rather suddenly.
It felt awesome going to the office and talking with the people I work with. Everybody is very supportive and interested in my condition. Somebody even went so far as to decorate my office for the holidays.
On my good days I find myself starting to look forward to returning to work. Then I remember that today’s blood draw had virtually no white blood cells, and avoiding the bugs that seem to go around in office environments is probably a good thing for the time being. Catching a routine cold during chemo can be very dangerous, as the infection can spread much further than usual before the weakened immune system is able to respond.
I also still have many bad days and bad moments. A bad moment is when I’m getting dressed and need to stop and rest to catch my breath. Another bad moment is when acid reflux gets so bad I can only sit on the couch and whimper. Yet another is when the pain flares and it gets very uncomfortable to even sit. A bad day will have multiple bad moments, and a general theme of fatigue and malaise.
But these bad moments and days are becoming fewer. I can see progress in how much pain relief I’m taking and when. I used to wake up in the middle of the night in pain, and need to take something to get back to sleep. That evolved to sleeping through the night, but needing to take something first thing in the morning. This week I haven’t been taking anything except coffee or tea when I first wake up. Progress! And of course the oncologist is very pleased with this as well.
On a parting note, while I still have my hair, it normally takes about two weeks before hair loss starts to occur. That means there’s still a few more days to go before the ponytail death watch needs to begin. At this point I’m optimistic I might keep my hair, but most people do lose at least some.
Saturday, December 8, 2018
Day 51, The Vermont Power Outage Story
This is a story about a rare time I had a great attitude going into a challenging situation and turned it into a positive experience. We had planned to visit our weekend getaway in Vermont during a couple free days between treatments. While the weather was good on those days, the days prior had lots of heavy wet snow. That snow broke a lot of trees that proceeded to take a lot of power lines down with them. It would be days before the power would be back. It was also due to get colder, putting the plumbing at risk of freezing.
When we arrived it was 35 degrees inside. Each exhale left a cloud of fog. Coats and hats remained on while starting the wood stove. While the stove warmed up, we went outside to shovel the walkways and deck. My wife did most of the heavy lifting, I only did what my back would allow. That meant chopping the heavy snow into relatively tiny blocks and not trying to throw them for distance as I usually do. Still, I was outside, being active, and doing what I could to maintain as much bone and muscle as possible.
Shovelling complete, it was time to drain the plumbing. This was a simple matter of attaching a hose to the drain of the well tank and hot water heater and letting the water run outside. Afterwards it occured to me this would be much more difficult if the place didn’t have a walk out basement, as water typically doesn’t flow up stairs very well.
Draining gets most of the water out, but some stays in the pipes, particular in the horizontal runs. Normally, you’re supposed to hook up an air compressor and blow the water out. However, we didn’t have a compressor and didn’t have electricity to run one if we did. Desperate times call for desperate measures, so I went to each faucet and literally used lung power to blow water through the pipes as best I could. The bathroom sink was the most challenging, as my head barely fit under the faucet.
At around this time the wood stove had warmed the place into the 50s and we decided to stay for the night. It gets dark early this time of year, leaving hours before bedtime without any light. We decided to go out for dinner. After that, we listened to a few Abbott and Costello radio shows from the 40s on Spotify. Radio shows are a different experience than a TV show. You can talk during many TV shows while still watching without missing much. With radio, you have to listen. The dim candle-lit atmosphere also added to the experience.
At this point, I should mention that my father-in-law built a one room cabin back in the 60s. No power, no plumbing, just basically a wooden tent. We have experience living without amenities for a short time, so this actually felt like old times and was a bit nostalgic. One luxury the cabin did have was a commode in the closet, for times when we didn’t want to walk outside in the wee hours to go wee in the outhouse. That cabin is still ours and is right across the street. That commode would come in handy after winterizing the toilet.
The next morning we snowshoed across the street to get the commode. I’m pretty sure that carrying a chamber pot on snowshoes and hoping that nobody drives by to see me doing so is an experience you can all relate to. It’s just part of the universal human experience, isn’t it?
The moral of this story is that it would have been so easy to be negative. A lot of my luck has been very bad recently, between advanced cancer and urinary retention. It would be very natural to throw an extended power outage onto the pile of bad news. But instead I was able to view it as a problem with a solution (in this case, “solution” can be taken as RV antifreeze poured into the water traps). It was rather fortunate this happened just prior to starting chemo. Now I don’t need to stress about further power outages or a furnace failure if I’m unable to travel while recovering from treatment.
When we arrived it was 35 degrees inside. Each exhale left a cloud of fog. Coats and hats remained on while starting the wood stove. While the stove warmed up, we went outside to shovel the walkways and deck. My wife did most of the heavy lifting, I only did what my back would allow. That meant chopping the heavy snow into relatively tiny blocks and not trying to throw them for distance as I usually do. Still, I was outside, being active, and doing what I could to maintain as much bone and muscle as possible.
Shovelling complete, it was time to drain the plumbing. This was a simple matter of attaching a hose to the drain of the well tank and hot water heater and letting the water run outside. Afterwards it occured to me this would be much more difficult if the place didn’t have a walk out basement, as water typically doesn’t flow up stairs very well.
Draining gets most of the water out, but some stays in the pipes, particular in the horizontal runs. Normally, you’re supposed to hook up an air compressor and blow the water out. However, we didn’t have a compressor and didn’t have electricity to run one if we did. Desperate times call for desperate measures, so I went to each faucet and literally used lung power to blow water through the pipes as best I could. The bathroom sink was the most challenging, as my head barely fit under the faucet.
At around this time the wood stove had warmed the place into the 50s and we decided to stay for the night. It gets dark early this time of year, leaving hours before bedtime without any light. We decided to go out for dinner. After that, we listened to a few Abbott and Costello radio shows from the 40s on Spotify. Radio shows are a different experience than a TV show. You can talk during many TV shows while still watching without missing much. With radio, you have to listen. The dim candle-lit atmosphere also added to the experience.
At this point, I should mention that my father-in-law built a one room cabin back in the 60s. No power, no plumbing, just basically a wooden tent. We have experience living without amenities for a short time, so this actually felt like old times and was a bit nostalgic. One luxury the cabin did have was a commode in the closet, for times when we didn’t want to walk outside in the wee hours to go wee in the outhouse. That cabin is still ours and is right across the street. That commode would come in handy after winterizing the toilet.
The next morning we snowshoed across the street to get the commode. I’m pretty sure that carrying a chamber pot on snowshoes and hoping that nobody drives by to see me doing so is an experience you can all relate to. It’s just part of the universal human experience, isn’t it?
The moral of this story is that it would have been so easy to be negative. A lot of my luck has been very bad recently, between advanced cancer and urinary retention. It would be very natural to throw an extended power outage onto the pile of bad news. But instead I was able to view it as a problem with a solution (in this case, “solution” can be taken as RV antifreeze poured into the water traps). It was rather fortunate this happened just prior to starting chemo. Now I don’t need to stress about further power outages or a furnace failure if I’m unable to travel while recovering from treatment.
Monday, December 3, 2018
Day 46, Chemo Starts Tomorrow
Tomorrow begins the latest and most aggressive attack in my war on the bastard that is advanced prostate cancer: chemotherapy. It's very likely that chemotherapy will kill a large number of the cancer cells, adding both years and quality to my life. However, it is very unlikely to kill all of them and be a complete cure. Having said that, I'm hopeful that it will not only kill the majority of the cancer, but combined with all the other chemicals going into my body will activate the dormant X-Men mutations inside of me, giving me new and exciting super powers.
The drug I will be given is Docataxel, which is a synthetic form of a toxin first discovered in a plant. Even though it was patented in the 80s and approved in the 90s, my treatment is considered state of the art. Several recently completed studies have shown that combining hormone therapy and chemotherapy at the same time improve outcomes. Previously, chemotherapy was held in reserve until after the cancer mutated to become resistant to the hormone therapy. So while the drugs are relatively old and boring, they way they're being combined is relatively new and exciting.
Tomorrow I will go to the oncologist's office and before treatment my body weight, blood counts, and probably a few other things will be checked to ensure I'm healthy enough for treatment. Assuming everything checks out, I'll be given the drug through an IV and that will take a little over an hour. Then there will be follow-up appointments for the next two weeks to see how I am doing. That will make one round of treatment lasting three weeks. Then plan is for me to get 6 rounds of treatment, lasting 18 weeks (4-ish months!) total.
To say that this is a bit intimidating is an understatement. I'm still recovering from the radiation treatment and bladder surgery from a month ago. My weight is down about 10 lbs in that time and I haven't been able to regain anything. On the bright side, I've discovered the secret to easy weight loss.
Continued weight loss is one of the risks I face. Fighting cancer requires a lot of high quality calories and protein. If I'm not able to eat, or my body isn't able to absorb the nutrients from what I do eat, the weight loss will continue. This makes it more difficult for my body to recover from the treatment, and also raises the risk that I will need to delay or miss a treatment. Delaying or missing a treatment makes the treatment less effective, as it gives the cancer an opportunity to recover.
I'm also feeling a bit frustrated. The radiation was supposed to address the back pain I've been feeling, and I was hopeful that after a couple weeks I'd feel healthy and be regaining weight. I could use the time between radiation and chemo to travel and visit family and friends. But as I read more about radiation treatment it seems I underestimated the time it can take to work and the duration of the side effects. Full recovery could take as long as a couple months.
While I have been able to run occasionally and travel to Vermont, there's also been a lot of resting on the couch between activities, which adds to the frustration. Then there's the unpredictability of life as well. On the last trip to Vermont the power was out for days due to a heavy wet snow. We decided to drain the plumbing to avoid frozen pipes as the weather was getting colder and there was no guarantee the power would be back soon. It was actually an epic handling of a difficult situation, and should be the subject of a future blog post, but it also took a lot out of me.
After getting back home from Vermont I planned to spend most of the next day on the couch watching TV and generally recovering from several relatively active days which had spiked my pain. Of course, that was the day the TV decided to quit working, so my rest day involved a trip to the store during the height of the holiday shopping season, not to mention physically swapping the old TV with the new one.
I'm trying to be hopeful that the chemotherapy won't be as harsh on my digestive system as the radiation was, and that the initial treatment will bring more relief than side effects. But I also have worries about how bad the side effects will get, and whether they will interfere with my ability to stick to the treatment plan. Simply put, this is a tough fight, and I'm trying my best to give it my best shot and stay positive.
The drug I will be given is Docataxel, which is a synthetic form of a toxin first discovered in a plant. Even though it was patented in the 80s and approved in the 90s, my treatment is considered state of the art. Several recently completed studies have shown that combining hormone therapy and chemotherapy at the same time improve outcomes. Previously, chemotherapy was held in reserve until after the cancer mutated to become resistant to the hormone therapy. So while the drugs are relatively old and boring, they way they're being combined is relatively new and exciting.
Tomorrow I will go to the oncologist's office and before treatment my body weight, blood counts, and probably a few other things will be checked to ensure I'm healthy enough for treatment. Assuming everything checks out, I'll be given the drug through an IV and that will take a little over an hour. Then there will be follow-up appointments for the next two weeks to see how I am doing. That will make one round of treatment lasting three weeks. Then plan is for me to get 6 rounds of treatment, lasting 18 weeks (4-ish months!) total.
To say that this is a bit intimidating is an understatement. I'm still recovering from the radiation treatment and bladder surgery from a month ago. My weight is down about 10 lbs in that time and I haven't been able to regain anything. On the bright side, I've discovered the secret to easy weight loss.
Continued weight loss is one of the risks I face. Fighting cancer requires a lot of high quality calories and protein. If I'm not able to eat, or my body isn't able to absorb the nutrients from what I do eat, the weight loss will continue. This makes it more difficult for my body to recover from the treatment, and also raises the risk that I will need to delay or miss a treatment. Delaying or missing a treatment makes the treatment less effective, as it gives the cancer an opportunity to recover.
I'm also feeling a bit frustrated. The radiation was supposed to address the back pain I've been feeling, and I was hopeful that after a couple weeks I'd feel healthy and be regaining weight. I could use the time between radiation and chemo to travel and visit family and friends. But as I read more about radiation treatment it seems I underestimated the time it can take to work and the duration of the side effects. Full recovery could take as long as a couple months.
While I have been able to run occasionally and travel to Vermont, there's also been a lot of resting on the couch between activities, which adds to the frustration. Then there's the unpredictability of life as well. On the last trip to Vermont the power was out for days due to a heavy wet snow. We decided to drain the plumbing to avoid frozen pipes as the weather was getting colder and there was no guarantee the power would be back soon. It was actually an epic handling of a difficult situation, and should be the subject of a future blog post, but it also took a lot out of me.
After getting back home from Vermont I planned to spend most of the next day on the couch watching TV and generally recovering from several relatively active days which had spiked my pain. Of course, that was the day the TV decided to quit working, so my rest day involved a trip to the store during the height of the holiday shopping season, not to mention physically swapping the old TV with the new one.
I'm trying to be hopeful that the chemotherapy won't be as harsh on my digestive system as the radiation was, and that the initial treatment will bring more relief than side effects. But I also have worries about how bad the side effects will get, and whether they will interfere with my ability to stick to the treatment plan. Simply put, this is a tough fight, and I'm trying my best to give it my best shot and stay positive.
Wednesday, November 28, 2018
Day 41, Medical Mary Jane
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.
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.
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