Just a quick dump of of the latest developments, without much wordsmithing or looking for the sliver lining, because there is a lot going on. Today started off with an 8am cystoscopy, which involves inserting a scope into the bladder to have a look around through the only way in: the "urethra", which I put in quotes because I'm using it as a euphemism for the most personal part of a man's anatomy.
And despite the use of a "numbing agent", this HURT!, not unlike a hot knife being inserted. I screamed out in pain like a little kid. My wife in the waiting room heard me. I'm sure everybody in the office heard it. The doctor described my "urethra" as "a little sensitive". No shit!
The result of this was the finding of a polyp in the bladder, which is probably cancer unrelated to the prostate cancer. Great! But this is little more than a speed bump in the grand scheme of things. Wednesday I'll go in for an outpatient operation which will remove the polyp and fill my bladder with a chemotherapy fluid to prevent recurrence. This is highly routine and low risk. The only concerning thing is that my dad had this exact same procedure about a dozen times because it kept recurring no matter what they tried to stop it. We won't think about that right now.
The biopsy and MRI results were also discussed. Yes, it is cancer, and yes, it is aggressive. But the cancer was only in half of the prostate, which means it didn't spend long there before spreading to other parts of the body. Generally, the urologist thought this was better news than he was expecting.
So from there off to the radiation oncologist. We'll ignore the bit about this doctor being a bit more straight spoken with zero tendency to sugar coat things. But his role in my treatment will be limited. Starting tomorrow and for the next 5 days I'll be getting beam radiation treatment aimed at addressing the sources of pain which hopefully will get me moving around easier. This nuclear attack is just the opening salvo focused on the problematic metastases. The system wide chemical attack will come after.
On Wednesday morning, I'll be meeting with the medical oncologist. This is the doctor which will likely prescribe chemotherapy, and this will be the cornerstone of my treatment. In fact, the radiation oncologist's urgency to get me into treatment quickly was so he could "get out of the way" of the chemotherapy he expects is coming.
Despite the radiation oncologist's rather pessimistic demeanor, he did say that the field of chemotherapy is exploding with new options. Dawne also pointed out that even though he spoke in terms of "extending life" and not "cure", that extension provides more time for better treatments to become available.
So if you've been keeping track of this all, you'll notice that Wednesday will be a packed day of meeting the medical oncologist, getting a radiation treatment, and finally surgery for the bladder polyp. Of course, the surgery means I can't have food after midnight, so I'll be starving through all of that. If this doesn't count as an all out assault on cancer, I don't know what does.
So hopefully by next week I'll be feeling less pain, just in time to go onto chemotherapy and probably be sick to my stomach and lose my hair, so I got that goin' for me (to make a Caddyshack reference). Stay tuned!
Monday, October 29, 2018
Saturday, October 27, 2018
The Painful Post
It's been almost a week since my last post and there's not much news to report. No test results, no update on a treatment plan, and generally no drastic change in symptoms. So I'll use this opportunity to go into some detail on the symptom that's causing me the most grief: pain.
For several weeks now I've been dealing with a pain that can be approximately described as if my back has gone out. It hurts to sit. It sometimes hurts to roll over in bed. If I move wrong, such as bending over to spit my toothpaste into the sink, it can feel like a knife being stuck in my back. All that said, I've also managed to carry the window A/C unit down two flights of stairs and go on a 4 mile run so not all activities cause pain, at least if I don't overdo them.
Ibuprofen and/or acetaminophen help, but bring up the prospect of doing too much, and being in a world of hurt when they wear off. Last night when I tried to go to bed I had severe pain from my back all the way down my right leg to the foot. That strongly implies a nerve is getting pinched somewhere.
This pain is best explained by the CT scan results. I had mentioned earlier that my cancer has spread. Let me see if I can tell you the bad news in a good way:
Imagine you're watching a cheesy animated high school science film about prostate cancer. The tumor is depicted as a busy bustling city in the prostate. There's lots of animated anthropomorphic cancer cells. Most have that silly happy grin that cartoon characters like to have. However a few are sad, and becoming disenchanted with city life, so they pack up their suitcases and decide to go on a cruise.
There are only a handful of cruise ships to choose from and they sail the bloodstream and lymphatic system to a relatively small number of destinations. These vacationing bastards decides to move to my vertebrae, where they proceed to interfere with the normal turnover of bone tissue. This can have all the expected effects of pain, inflammation, and pinching of nerves.
The point of this silly analogy is that while prostate cancer can spread, it usually spreads to very specific spots, and my CT scan was consistent with this. There are bone lesions in my hip and back, and apparently one very swollen lymph node (assuming I understand the medical jargon in the summary). This explains the pain I have and continue to feel.
And now the tricky part: viewing this revelation as a good thing. My advanced cancer wasn't caused by the CT scan, though honestly it feels that way much of the time. It's just never easy to find out that your most hypochondriac thoughts weren't anxiety, but were actually a pretty accurate assessment.
So here's the interesting thing that I didn't know before: Prostate cancer in the bone isn't bone cancer, it's still prostate cancer. This means it's still affected by any treatment that targets prostate cancer. For example, denying testosterone will stunt the growth of the cancer cells, and I've already had an injection of Eligard that will do just that. There are also radiation treatments that selectively seek out the weakened areas of bone where the cancer is located, and I'm hoping the oncologist will agree that that's a good option for me.
So now those vacationing cancer cells have arrived at their vacation destination to find they're no longer in a cheesy science film, but in a cruel Monty Python animation. There's no food at the destination, and a bright sun radiating down on them, and gosh darn it they forgot their sunscreen. They're starving, listless, and sunburnt. Suffer and die you little assholes. May you be squashed by a big bare foot descending from the top of the screen.
Obviously, I've been doing some research on the web about my condition. It's a difficult balancing act. It's very easy to have a positive attitude if I'm not reading about cancer and not having any observable symptoms. It's diabolically difficult when it hurts to simply sit in a chair, and I'm reading about how easy it can be to actually die from this, and how unpleasant the treatments can be.
It's important to do research to understand the disease, what's happening to me, and what are the options for fixing it. But it can also be extremely depressing and stressful. So many people have reached out to me to offer their support. Please please please continue to do this! Get ready for a long drawn out fight. Be ready for me to withdraw into myself at times and when I do, slap me out of it.
There is much reason for hope! The CT scan notes that the vital organs in my abdomen are normal. To my mind, this means the cancer hasn't moved into any areas that will immediately kill me. It also means my kidney and liver are up to the task of dealing with the treatment regimen (they have to break down and eliminate the drugs after they've done their job). I'm also starting out with strong bones and a reasonable amount of lean mass and fat mass. In short, I am strong where I need to be to withstand treatment.
Let's beat this!
For several weeks now I've been dealing with a pain that can be approximately described as if my back has gone out. It hurts to sit. It sometimes hurts to roll over in bed. If I move wrong, such as bending over to spit my toothpaste into the sink, it can feel like a knife being stuck in my back. All that said, I've also managed to carry the window A/C unit down two flights of stairs and go on a 4 mile run so not all activities cause pain, at least if I don't overdo them.
Ibuprofen and/or acetaminophen help, but bring up the prospect of doing too much, and being in a world of hurt when they wear off. Last night when I tried to go to bed I had severe pain from my back all the way down my right leg to the foot. That strongly implies a nerve is getting pinched somewhere.
This pain is best explained by the CT scan results. I had mentioned earlier that my cancer has spread. Let me see if I can tell you the bad news in a good way:
Imagine you're watching a cheesy animated high school science film about prostate cancer. The tumor is depicted as a busy bustling city in the prostate. There's lots of animated anthropomorphic cancer cells. Most have that silly happy grin that cartoon characters like to have. However a few are sad, and becoming disenchanted with city life, so they pack up their suitcases and decide to go on a cruise.
There are only a handful of cruise ships to choose from and they sail the bloodstream and lymphatic system to a relatively small number of destinations. These vacationing bastards decides to move to my vertebrae, where they proceed to interfere with the normal turnover of bone tissue. This can have all the expected effects of pain, inflammation, and pinching of nerves.
The point of this silly analogy is that while prostate cancer can spread, it usually spreads to very specific spots, and my CT scan was consistent with this. There are bone lesions in my hip and back, and apparently one very swollen lymph node (assuming I understand the medical jargon in the summary). This explains the pain I have and continue to feel.
And now the tricky part: viewing this revelation as a good thing. My advanced cancer wasn't caused by the CT scan, though honestly it feels that way much of the time. It's just never easy to find out that your most hypochondriac thoughts weren't anxiety, but were actually a pretty accurate assessment.
So here's the interesting thing that I didn't know before: Prostate cancer in the bone isn't bone cancer, it's still prostate cancer. This means it's still affected by any treatment that targets prostate cancer. For example, denying testosterone will stunt the growth of the cancer cells, and I've already had an injection of Eligard that will do just that. There are also radiation treatments that selectively seek out the weakened areas of bone where the cancer is located, and I'm hoping the oncologist will agree that that's a good option for me.
So now those vacationing cancer cells have arrived at their vacation destination to find they're no longer in a cheesy science film, but in a cruel Monty Python animation. There's no food at the destination, and a bright sun radiating down on them, and gosh darn it they forgot their sunscreen. They're starving, listless, and sunburnt. Suffer and die you little assholes. May you be squashed by a big bare foot descending from the top of the screen.
Obviously, I've been doing some research on the web about my condition. It's a difficult balancing act. It's very easy to have a positive attitude if I'm not reading about cancer and not having any observable symptoms. It's diabolically difficult when it hurts to simply sit in a chair, and I'm reading about how easy it can be to actually die from this, and how unpleasant the treatments can be.
It's important to do research to understand the disease, what's happening to me, and what are the options for fixing it. But it can also be extremely depressing and stressful. So many people have reached out to me to offer their support. Please please please continue to do this! Get ready for a long drawn out fight. Be ready for me to withdraw into myself at times and when I do, slap me out of it.
There is much reason for hope! The CT scan notes that the vital organs in my abdomen are normal. To my mind, this means the cancer hasn't moved into any areas that will immediately kill me. It also means my kidney and liver are up to the task of dealing with the treatment regimen (they have to break down and eliminate the drugs after they've done their job). I'm also starting out with strong bones and a reasonable amount of lean mass and fat mass. In short, I am strong where I need to be to withstand treatment.
Let's beat this!
Monday, October 22, 2018
A Hero Emerges
Grrr I hate cancer, I just want to grab my chainsaw and go running after cancer cells and cut them up like Ash going after the Evil Dead. Not quite a practical idea, but it is the image I want to have in my head, and it's a great excuse for a campy photo opportunity:
It's super easy to be worried right now. I've been given a diagnosis but have to wait my turn to see the oncologist before the heavy artillery can come to my rescue. What can I do in the meantime to fight the battle against this aggressive and vile enemy inside me? It turns out there's a number of things.
For starters, I can share my story and reach out to others for help and support. This has worked wonderfully. I've received so much love, support, advice, and general well wishes that I am in awe. It also led to a wonderful phone call this morning with "Coach Jeff", a stage 4 prostate cancer survivor who has completed two ironman triathlons since his diagnosis 4 years ago. He is living proof that people with late stage cancer can beat back the disease and thrive. I'm finding other survivors to use as a source of knowledge and inspiration as well, but when one is both an ironman and a late stage cancer survivor, you gotta call them out by name.
The next thing I can do is eat healthier. Rumor has it that cancer cells rely on sugar to survive. Of course, the rest of the body needs some to survive as well, but excess sugar makes life easier for the cancer cells and makes life harder for the normal cells as they struggle to cope with the excess nutrition. So, less sugar, cut out the dairy, less processed foods, more plants and less animals, and the balance of power should shift to the healthy cells. It's not a cure for cancer by any means, but it does put a finger on the scale in favor of recovery. It's also an excuse to post a picture of last night's dinner, salmon with raw veggies and quinoa:
But wait a minute. That would also mean no bowl of chocolate ice cream sundae while lounging in front of the TV. Man this cancer thing does suck! What a crappy disease! Truth is I've been wanting to eat better for a long time, but faster running times aren't as compelling a reason as simple survival.
Next, I can spend more time resting, relaxing, and even napping. The immune system can go after and attack cancer cells (though it's not clear if they use chainsaws to do so), but if I'm stressed and sleep deprived, my immune system won't be up for the job. Like diet, this won't cure cancer on its own but it's another finger on the scale. So here is what a hero fighting cancer actually looks like:
Not as exciting as running around with a chainsaw, but trust me, that's what I dream of when asleep.
And finally, the one universal bit of advice I've been given is to keep a positive attitude! I've had my dark moments, but right now I'm totally pumped. Writing this blog post required me to put thought into what I can do to fight the battle in this very moment, instead of anxiously waiting for the next doctor's appointment. I'm writing it because people are interested in my story. Thus, your interest and support are inspiring me to do everything I can to beat this disease. I am standing on your shoulders. Thank you!
It's super easy to be worried right now. I've been given a diagnosis but have to wait my turn to see the oncologist before the heavy artillery can come to my rescue. What can I do in the meantime to fight the battle against this aggressive and vile enemy inside me? It turns out there's a number of things.
For starters, I can share my story and reach out to others for help and support. This has worked wonderfully. I've received so much love, support, advice, and general well wishes that I am in awe. It also led to a wonderful phone call this morning with "Coach Jeff", a stage 4 prostate cancer survivor who has completed two ironman triathlons since his diagnosis 4 years ago. He is living proof that people with late stage cancer can beat back the disease and thrive. I'm finding other survivors to use as a source of knowledge and inspiration as well, but when one is both an ironman and a late stage cancer survivor, you gotta call them out by name.
The next thing I can do is eat healthier. Rumor has it that cancer cells rely on sugar to survive. Of course, the rest of the body needs some to survive as well, but excess sugar makes life easier for the cancer cells and makes life harder for the normal cells as they struggle to cope with the excess nutrition. So, less sugar, cut out the dairy, less processed foods, more plants and less animals, and the balance of power should shift to the healthy cells. It's not a cure for cancer by any means, but it does put a finger on the scale in favor of recovery. It's also an excuse to post a picture of last night's dinner, salmon with raw veggies and quinoa:
Next, I can spend more time resting, relaxing, and even napping. The immune system can go after and attack cancer cells (though it's not clear if they use chainsaws to do so), but if I'm stressed and sleep deprived, my immune system won't be up for the job. Like diet, this won't cure cancer on its own but it's another finger on the scale. So here is what a hero fighting cancer actually looks like:
Not as exciting as running around with a chainsaw, but trust me, that's what I dream of when asleep.
And finally, the one universal bit of advice I've been given is to keep a positive attitude! I've had my dark moments, but right now I'm totally pumped. Writing this blog post required me to put thought into what I can do to fight the battle in this very moment, instead of anxiously waiting for the next doctor's appointment. I'm writing it because people are interested in my story. Thus, your interest and support are inspiring me to do everything I can to beat this disease. I am standing on your shoulders. Thank you!
Saturday, October 20, 2018
The Dark Days
In my ongoing story, this is a chapter where the hero is beaten up and the villain appears to be winning. It makes for great drama as the hero gets to seek revenge in a future chapter. But suffice to say that my wish for a short story with a happy ending won't come true. So sit down, grab a box of tissues, and keep reading.
Thursday morning was my CT scan. This was a rather straightforward procedure and the only challenge here was the barium sulfate prep drink. The instructions said "may cause loose stools in some patients". What they don't tell you is it may cause explosive movements in other patients, like me. Luckily that didn't last long and we were soon back home where I went upstairs to take a nap, then the phone rang.
It was my urologist's office, wanting to know if I could come in for the prostate biopsy at 7:30 tomorrow (Friday) morning. It was only after getting off the phone that it occurred to me that there might be a connection between the scan results and moving the biopsy earlier.
Let me say, the biopsy was an experience unlike anything I've ever had. First, they shove a piece of ultrasound equipment up my rear, and then proceed to inject Novocaine, and then insert a needle into the prostate to withdraw a sample 12 times. This does quite a bit of damage to rather sensitive tissues, the consequences of which I'll get to near the end.
So after the biopsy, the doctor spoke to me and my wife about the CT scan results. They weren't good, but they did explain some of the pains I've been developing. Metastases. Advanced cancer. The biopsy results won't be in for about a week, but the working diagnosis is an aggressive form of prostate cancer.
This is not unexpected given the high PSA result that started the week, but it's still devastating news to hear. We both cried. Then we went out to lunch with one of Dawne's friends that happens to be a survivor of multiple cancers. We talked a lot about cancer and maintaining a positive attitude and actually laughed quite a bit.
In the evening, we called my sister and mom and told them the news. Breaking the news to mom is the single most gut-wrenching thing I've done in my life. Dawne had to do most of the talking, as I could barely hold myself together. Just writing this paragraph was difficult, and used up a fair share of tissues.
Back to the disease itself. "Prostate cancer" is actually an umbrella term that covers multiple forms of cancer that can attack the prostate. Unfortunately the younger you are, the more likely you are to get one of the aggressive forms, and that seems to be what's happening with me.
Prostate cancer also depends on testosterone to grow, which might explain why in the general case it's more aggressive in young men who have naturally higher testosterone. It also means that it's sometimes possible to manage the advanced form of the disease by blocking the body's production of testosterone, and I've already been given an injection of Eligard that is intended to do just that. Unfortunately it will take a few weeks before we know if it begins to work. In the meantime, there will be more tests and a meeting with an oncologist.
As for me, I'm in pretty rough shape at the moment. My pain levels are currently pretty bad, as I had been managing them with ibuprofen but that promotes bleeding so I can't take it again until everything down there heals from the biopsy. Tylenol helps some, but not as much. Mostly I'm feeling beat up from tests, emotional stress, and the resulting sleep deprivation. Right now my focus is on resting and recovering over the weekend when not writing a blog post. It's a depressing part of the story, and things will probably continue to get worse for the next week or two. But it's also a setup for the epic hero (that would be me) to come fighting back in a future chapter. After all, how can you tell a good story without a good antagonist?
Several lighter observations:
The "biopsy site" was bleeding for a good while yesterday, and I still had gas from the barium sulfate drink. Combine the two and there were several episodes of farting blood. My solution was to put a panty liner in my underwear. Practical and effective if not very macho. It's all part of the absurd adventure I'm on.
After a digital rectal exam and the biopsy in back to back weeks, I'm planning to get a tattoo on my butt that reads "Exit Only".
Side effects of Eligard include hot flashes and possible breast growth. I'm worried I may have to turn in my man card shortly.
Wednesday, October 17, 2018
My Prostate is Broken
It's been a few years since I've posted here, but my life has recently become eventful so I feel the need to write again. Hopefully this saga, this absurd adventure on which I am embarking, will be brief and have a happy ending.
But before we get to the entertaining part of the story, I need to get very honest and a bit graphic about my current situation. This is not something to be discussed in polite company over dinner, but on the other hand I think it ridiculous that guys never seem to talk about important issues specific to men's health.
So as the title says, my prostate is broken. There's occasional blood in fluids that do not normally contain blood. There's pain in my groin region that may or may not be related to other pains in my hip, back and abdomen (which could be overuse injuries from running). There's a confirmed nodule on the prostate itself, and my PSA came in at over 200 (it was a perfectly normal 2.1 only 13 months ago). Wow. This is not the typical case of a slightly elevated PSA on a routine blood test with no observable symptoms.
There are three things that could be causing this, and my bizarre quest is to work with the wizards and sages (aka medical establishment) to eliminate two of the three possibilities
The other purpose of my journey is to bring awareness to the topic of prostates. It's been my observation that breast cancer has much better marketing than prostate cancer. September is prostate health awareness month and prostate cancer is symbolized by a light blue ribbon. October is breast cancer awareness month and is symbolized by a pink ribbon. Given that, I found it quite remarkable that the NFL used to explode in pink for the month of October, after not hearing a peep about prostates in the month of September. Luckily that seems to be changing, as the NFL recently decided to broaden its October focus to include more cancers. Suffice to say I still think men in general would rather talk about breasts than prostates.
With all that out of the way, on with the story. My adventure begins with a conversation with a rather attractive woman, and within a few sentences was discussing my genitalia and sexual habits. Of course, the context for this was a urologist's office, which makes the preceding sentence a bit less exciting.
And of course that lack of context works both ways, as a short while later a man I'd never met before walked in, introduced himself, proceeded to shove a finger into a body cavity, and I was strangely okay with that. It was in this compromising situation that I found out about the nodule, and remembered Chevy Chase singing "Moon River".
I left the office with a prescription for an antibiotic to cover the possibility of prostatitis and a long lists of tests to undergo. I felt overwhelmed and a bit sick, but the latter part could be a side effect of the antibiotic.
Then first thing on Monday morning I got a call back from the doctor, and found out my PSA results were "worrisome", so add a biopsy to the list of tests.
And that's about where I am now. I'm really hoping I have an infection and/or stone. How many times do you wish for that?
Tomorrow is my CAT scan, and I'll be taking the day off from work to focus solely on that. All these tests seem to have an element of the bizarre about them. In this case, I have to drink two bottles of liquid before hand that "may cause diarrhea like symptoms in some patients", which may be problematic when it's an hour long car ride to where I'll be having the test.
The adventure continues, stay tuned for the next exciting installment.
But before we get to the entertaining part of the story, I need to get very honest and a bit graphic about my current situation. This is not something to be discussed in polite company over dinner, but on the other hand I think it ridiculous that guys never seem to talk about important issues specific to men's health.
So as the title says, my prostate is broken. There's occasional blood in fluids that do not normally contain blood. There's pain in my groin region that may or may not be related to other pains in my hip, back and abdomen (which could be overuse injuries from running). There's a confirmed nodule on the prostate itself, and my PSA came in at over 200 (it was a perfectly normal 2.1 only 13 months ago). Wow. This is not the typical case of a slightly elevated PSA on a routine blood test with no observable symptoms.
There are three things that could be causing this, and my bizarre quest is to work with the wizards and sages (aka medical establishment) to eliminate two of the three possibilities
- Prostatitis, an inflammation and/or infection of the prostate
- Prostate stone, which may or may not be related to Prostatitis
- Cancer, which is far and away the most scary possibility given the sudden high PSA number
The other purpose of my journey is to bring awareness to the topic of prostates. It's been my observation that breast cancer has much better marketing than prostate cancer. September is prostate health awareness month and prostate cancer is symbolized by a light blue ribbon. October is breast cancer awareness month and is symbolized by a pink ribbon. Given that, I found it quite remarkable that the NFL used to explode in pink for the month of October, after not hearing a peep about prostates in the month of September. Luckily that seems to be changing, as the NFL recently decided to broaden its October focus to include more cancers. Suffice to say I still think men in general would rather talk about breasts than prostates.
With all that out of the way, on with the story. My adventure begins with a conversation with a rather attractive woman, and within a few sentences was discussing my genitalia and sexual habits. Of course, the context for this was a urologist's office, which makes the preceding sentence a bit less exciting.
And of course that lack of context works both ways, as a short while later a man I'd never met before walked in, introduced himself, proceeded to shove a finger into a body cavity, and I was strangely okay with that. It was in this compromising situation that I found out about the nodule, and remembered Chevy Chase singing "Moon River".
I left the office with a prescription for an antibiotic to cover the possibility of prostatitis and a long lists of tests to undergo. I felt overwhelmed and a bit sick, but the latter part could be a side effect of the antibiotic.
Then first thing on Monday morning I got a call back from the doctor, and found out my PSA results were "worrisome", so add a biopsy to the list of tests.
And that's about where I am now. I'm really hoping I have an infection and/or stone. How many times do you wish for that?
Tomorrow is my CAT scan, and I'll be taking the day off from work to focus solely on that. All these tests seem to have an element of the bizarre about them. In this case, I have to drink two bottles of liquid before hand that "may cause diarrhea like symptoms in some patients", which may be problematic when it's an hour long car ride to where I'll be having the test.
The adventure continues, stay tuned for the next exciting installment.
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