One would think, that after living in this same body for over 66 years, that I would would know it pretty well by now. I've learned what happens when I take care of it and when I don't; when I push too hard or don't push hard enough; which signals I can ignore and which ones I must pay attention to…
But I'm still learning. Granted, I've been experiencing some new and different things lately -- things I had never experienced before -- so along with the new experiences come new insight into how my body is reacting to the internal war my immune system is waging to keep me healthy.
These insights do not appear passively. I need to maintain an almost constant vigil, keeping a mental inventory of actions and reactions, trials and results to keep up with the almost ever-changing status of my body.
There are days when I feel incredibly energized and just have to go for a run. Other days a long strenuous hike in the mountains is called for. Still other days my body tells me to relax, spend some time in the hot tub and get back into balance. One day I'm hungry all day and am constantly eating, the next day may be a complete change with minimal appetite. Through all of these changes, what I have noticed most clearly, is that If I don't pay attention and do what my body is telling me to do I get "out of sorts," my equilibrium is lost and I then need to focus more of my energies on regaining that "centered" feeling.
In some ways I feel this is a very selfish approach to living. I haven't always put my own needs and wants as top priority in my life, but, at least for now, it seems like this is what's being demanded by my body. Since it's the only body I have, and it's tough to keep going without it, I'd better listen up and try to comply with its demands.
It would be nice just to tell my body to "buck up, soldier" and take it for a run every morning, lift those weights to the point of fatigue like I did thirty years ago, raise the physical limits that have settled in over the past year, put my head down and charge into the physical challenges facing me. In the past I would have considered this type of behavior to reflect strong personal discipline - a positive trait. Now, it takes just as strong personal discipline to not behave in this manner. To exercise restraint, patience and control in responding to my body's needs.
I have mentioned in past writings that I am not the most patient person in the world. I have been known to challenge the status quo at times. But the "new normal" is that there are new limits for what my body will accept, and although I can challenge them, and hopefully expand them, I need to do so while maintaining a reasonable balance between "not enough" and "too much."
To paraphrase the writings of George Bernard Shaw, the reasonable man attempts to modify his values to stay within the constraints imposed by society while the unreasonable man attempts to modify the constraints of society to reflect his own values. Therefore all progress is made by unreasonable men.
The challenge: Be reasonably unreasonable!
Wednesday, April 16, 2014
Saturday, April 12, 2014
IT'S ALWAYS SOMETHING...
…If it isn't one thing, it's another. A classic line from Gilda Radner's Roseanne Roseannadanna character in her SNL days. It popped into my head the other day while I was chatting with my oncologist.
I had a PET scan a couple of days before that conversation and it confirmed the findings from my CT scan a week or so ago. The previous tumors appear to have resolved and the only significant findings of "weak-uptake" lesions are, more than likely, areas of resolving inflammation from my immune system attacking the cancer. My liver enzymes, which had elevated recently as a side-effect of the immunotherapy drugs, are responding to the steroid treatment and coming down.
I had thought that the infusions of the investigational drug would restart as my liver enzymes normalized and I was off steroids. However… it's always something. A close read of the clinical trial protocol revealed that my hepatic (liver) enzyme level had gone so high that I was disqualified from continuing in the trial.
This is not all bad news. Obviously, I have had great benefit from the drugs that I have received, getting a "deep" and rapid response, ridding my body of the tumors. Results from earlier clinical trials and other clinical experience suggest that such a response is "durable," and could last for quite some time, perhaps several years. As part of my participation in the trial, I will continue being monitored on a regular basis with physical exams and imaging studies to detect any possible recurrence, and if anything pops up, there are other therapies available.
If nothing else, it will make my upcoming vacation a bit less hectic in that I will not have to interrupt cruising the Bahamas and return to California every two weeks to continue my infusions. So I kind of feel like the baby bird kicked out of the nest -- I'm on my own for a while with no infusions, no weekly labs, no visits with supporting staff every couple of weeks, off traveling out of the country with limited communication.
It will actually feel good to be a bit more "self-reliant" for a while. I don't want to get too dependent on the medical system. I'll keep a realistic perspective, knowing that I may need more therapy and/or treatment in the future, but this incents me to be responsible for my health, to "own" my body, my mind and my emotions, as well as the connection between them.
Although I have continued meditating on a regular basis, it has become more focused on relaxation rather than the more intense healing efforts of a few months ago. I'll have to work on re-establishing the balance, not only in my meditating, but also in my life, that will keep me healthy.
For now, things continue moving in the right direction. I'm feeling stronger, have increasing energy and am having more "good" days than "not as good" days. We're heading back to the boat this week to continue our journey to the Bahamas that was called off a year ago February, and I anticipate more and more good days.
It was a beautiful morning for a run today, and as I was jogging along, enjoying the great weather and scenic trail, I made a resolution which I think will be fairly easy to keep: REALLY, REALLY ENJOY THE GOOD DAYS!!!
I had a PET scan a couple of days before that conversation and it confirmed the findings from my CT scan a week or so ago. The previous tumors appear to have resolved and the only significant findings of "weak-uptake" lesions are, more than likely, areas of resolving inflammation from my immune system attacking the cancer. My liver enzymes, which had elevated recently as a side-effect of the immunotherapy drugs, are responding to the steroid treatment and coming down.
I had thought that the infusions of the investigational drug would restart as my liver enzymes normalized and I was off steroids. However… it's always something. A close read of the clinical trial protocol revealed that my hepatic (liver) enzyme level had gone so high that I was disqualified from continuing in the trial.
This is not all bad news. Obviously, I have had great benefit from the drugs that I have received, getting a "deep" and rapid response, ridding my body of the tumors. Results from earlier clinical trials and other clinical experience suggest that such a response is "durable," and could last for quite some time, perhaps several years. As part of my participation in the trial, I will continue being monitored on a regular basis with physical exams and imaging studies to detect any possible recurrence, and if anything pops up, there are other therapies available.
If nothing else, it will make my upcoming vacation a bit less hectic in that I will not have to interrupt cruising the Bahamas and return to California every two weeks to continue my infusions. So I kind of feel like the baby bird kicked out of the nest -- I'm on my own for a while with no infusions, no weekly labs, no visits with supporting staff every couple of weeks, off traveling out of the country with limited communication.
It will actually feel good to be a bit more "self-reliant" for a while. I don't want to get too dependent on the medical system. I'll keep a realistic perspective, knowing that I may need more therapy and/or treatment in the future, but this incents me to be responsible for my health, to "own" my body, my mind and my emotions, as well as the connection between them.
Although I have continued meditating on a regular basis, it has become more focused on relaxation rather than the more intense healing efforts of a few months ago. I'll have to work on re-establishing the balance, not only in my meditating, but also in my life, that will keep me healthy.
For now, things continue moving in the right direction. I'm feeling stronger, have increasing energy and am having more "good" days than "not as good" days. We're heading back to the boat this week to continue our journey to the Bahamas that was called off a year ago February, and I anticipate more and more good days.
It was a beautiful morning for a run today, and as I was jogging along, enjoying the great weather and scenic trail, I made a resolution which I think will be fairly easy to keep: REALLY, REALLY ENJOY THE GOOD DAYS!!!
Monday, April 7, 2014
LATE TO THE PARTY
As a quick recap, the immunotherapy drugs I am on ramp up my own immune system so it will "eat up" the cancer cells. Well, my immune system ate my tumors for lunch, but apparently were still hungry. They have, since, started nibbling on my liver for dessert. As more and more white blood cells get activated against the cancer, a known side effect is that some activity against my own, normal cells could take place. I received the full four doses of ipilimumab per the protocol, but I responded so thoroughly and quickly that many of the white blood cells got activated as the main party was winding down and headed over to my liver.
Although I had no signs or symptoms of this going on, my lab tests revealed elevated liver enzymes over 10X normal. This is not unheard of, but this side effect showed up a bit late relative to the timing of the infusions. Often, if this is going to happen, it happens after the second or third infusion. This idea of being later than normal is very out of character for me, and there is a history behind this behavior.
My whole life, people compared me to my grandfather. A bit of a free spirit, challenging the status quo at times and very handy and creative with his hands. People said I looked a bit like him, sounded like him and certainly approached life like him. One thing about his behavior stood out very noticeably -- he was always early. If he was to meet someone, he was always at least 15 minutes early. If he was to drive somewhere, he always left early. I remember one morning that he was driving from San Diego to Los Angeles - a couple of hours drive - and he was up at 4:30 AM packing up the car to get an early start. One day he told me the story of why this was so much a part of him.
My grandfather, George, was born in 1888 on the farm in Northern Ireland. He was the first child for his parents (the first of 18!), who lived in a one-room stone cottage with a thatched roof. They did almost everything themselves, but did hire extra hands to help with the harvest. Part of the hired hand's compensation was three meals each day. When George's mother went into labor, the hands were out in the fields, but she had not yet delivered when they were done for the day and showed up for their meal. Of course, they couldn't come into the cottage while she was in labor, so they patiently hung around outside but had to wait until after midnight for George to be born and then get their meal. Every time my grandfather told this story, he ended it with "And that was the last time in my life I was ever late!"
I seem to have inherited this trait, as I am almost always early and want to get an early start on things.
So, with this is mind, we got an early start on treatment of this side effect and pumped in some IV steroids and got started on prednisone to cool things off a bit. This seems to have worked and my enzymes, 5 days later, are on their way down. The second phase of my infusion therapy is delayed a short while, but, the best news, our trip to the Bahamas is still a go! We're scheduled to head back to Florida next week to get the boat ready.
This is a party I won't be late for!
Although I had no signs or symptoms of this going on, my lab tests revealed elevated liver enzymes over 10X normal. This is not unheard of, but this side effect showed up a bit late relative to the timing of the infusions. Often, if this is going to happen, it happens after the second or third infusion. This idea of being later than normal is very out of character for me, and there is a history behind this behavior.
My whole life, people compared me to my grandfather. A bit of a free spirit, challenging the status quo at times and very handy and creative with his hands. People said I looked a bit like him, sounded like him and certainly approached life like him. One thing about his behavior stood out very noticeably -- he was always early. If he was to meet someone, he was always at least 15 minutes early. If he was to drive somewhere, he always left early. I remember one morning that he was driving from San Diego to Los Angeles - a couple of hours drive - and he was up at 4:30 AM packing up the car to get an early start. One day he told me the story of why this was so much a part of him.
My grandfather, George, was born in 1888 on the farm in Northern Ireland. He was the first child for his parents (the first of 18!), who lived in a one-room stone cottage with a thatched roof. They did almost everything themselves, but did hire extra hands to help with the harvest. Part of the hired hand's compensation was three meals each day. When George's mother went into labor, the hands were out in the fields, but she had not yet delivered when they were done for the day and showed up for their meal. Of course, they couldn't come into the cottage while she was in labor, so they patiently hung around outside but had to wait until after midnight for George to be born and then get their meal. Every time my grandfather told this story, he ended it with "And that was the last time in my life I was ever late!"
I seem to have inherited this trait, as I am almost always early and want to get an early start on things.
So, with this is mind, we got an early start on treatment of this side effect and pumped in some IV steroids and got started on prednisone to cool things off a bit. This seems to have worked and my enzymes, 5 days later, are on their way down. The second phase of my infusion therapy is delayed a short while, but, the best news, our trip to the Bahamas is still a go! We're scheduled to head back to Florida next week to get the boat ready.
This is a party I won't be late for!
Sunday, March 30, 2014
ONLY THREE MONTHS
Twelve weeks, IV infusions once every three weeks. That really doesn't seem like a lot of time, nor does it seem like very aggressive therapy. Only four visits to the oncologist's office with a lot of down time in between. Until a few days ago, no imaging studies since December when my lungs were full of tumor and tumors were visualized in my neck and in my leg.
Three months doesn't seem like a lot of time -- in retrospect. During that interval, however, there were some pretty long weeks filled with pain, anxiety, fear, apprehension, exhaustion and lots of hope.
My signs and symptoms from the tumors had abated considerably the last few weeks, but the telling would be in the results of the week 12 CT scan, done a few days ago. In the world of the cancer patient it's termed "scanxiety" -- one's emotional state anticipating the scan and awaiting the results. I was fully prepared to wait until my next doctor's appointment early next week, and was a little surprised to see his phone number on the screen when there was a call the day after the scan. It turned out that he was the one who couldn't wait until next week to tell me the results.
"They can't find any cancer."
Now, of course, this is exactly what I was hoping for, but it had a strangely disquieting effect on me. I should have been jumping for joy, crying with relief, yelling from the rooftops and preparing to go out celebrating. But something just wasn't right. My whole professional life I had been taught, I had seen and had believed the paradigm that Stage 4 melanoma was not a reversible phenomenon. Yet I had just been told that the tumors from what was once an almost invariably fatal condition had disappeared. Yes, it makes sense when one looks at the advances in immunotherapy and knows something about the mechanism of action of these drugs, but it is hard to make sense of it emotionally.
As I was out hiking today, I was ruminating on this. I should be able to accept changing values such as these. In general, I'm in the "early adopter" group for technologic advances, I'm accepting of new and different ideas in art, music, etc. But as I walked, I did recall another situation in my life, a long time ago, when I was thrown off balance as my beliefs were debunked, and I suspect I was not the only one who had this same experience.
Procreation. The Birds and the Bees. We were probably all told some type of fable about where babies came from. And most of us probably believed it, unquestioning. Then the day came when we learned the truth. I may not remember the exact day, but I do remember the exact reaction. I was just old enough, and just educated enough to understand the biological principles, so that was no big deal. But then the realization hit. "NO…WAIT! That can't be right! Not MY Mom! not MY Dad!"
I finally got used to that idea (although I'm not sure MY children have), and we adapt. I've written before about needing to adapt to the "new normal" once cancer is diagnosed. I guess I hadn't realized that the new normal can include such good things as "They can't find any cancer."
The results of this scan are not the last words in the story of my melanoma. I still have much therapy to undergo. I will have more evaluation down the line to assess for any residual cancer. There are still risks of recurrence. But I'm starting to adapt to the concept that all of the tumors are gone. And the best thing I can think of to do in celebration? Just keep breathing, as long as I can.
Three months doesn't seem like a lot of time -- in retrospect. During that interval, however, there were some pretty long weeks filled with pain, anxiety, fear, apprehension, exhaustion and lots of hope.
My signs and symptoms from the tumors had abated considerably the last few weeks, but the telling would be in the results of the week 12 CT scan, done a few days ago. In the world of the cancer patient it's termed "scanxiety" -- one's emotional state anticipating the scan and awaiting the results. I was fully prepared to wait until my next doctor's appointment early next week, and was a little surprised to see his phone number on the screen when there was a call the day after the scan. It turned out that he was the one who couldn't wait until next week to tell me the results.
"They can't find any cancer."
Now, of course, this is exactly what I was hoping for, but it had a strangely disquieting effect on me. I should have been jumping for joy, crying with relief, yelling from the rooftops and preparing to go out celebrating. But something just wasn't right. My whole professional life I had been taught, I had seen and had believed the paradigm that Stage 4 melanoma was not a reversible phenomenon. Yet I had just been told that the tumors from what was once an almost invariably fatal condition had disappeared. Yes, it makes sense when one looks at the advances in immunotherapy and knows something about the mechanism of action of these drugs, but it is hard to make sense of it emotionally.
As I was out hiking today, I was ruminating on this. I should be able to accept changing values such as these. In general, I'm in the "early adopter" group for technologic advances, I'm accepting of new and different ideas in art, music, etc. But as I walked, I did recall another situation in my life, a long time ago, when I was thrown off balance as my beliefs were debunked, and I suspect I was not the only one who had this same experience.
Procreation. The Birds and the Bees. We were probably all told some type of fable about where babies came from. And most of us probably believed it, unquestioning. Then the day came when we learned the truth. I may not remember the exact day, but I do remember the exact reaction. I was just old enough, and just educated enough to understand the biological principles, so that was no big deal. But then the realization hit. "NO…WAIT! That can't be right! Not MY Mom! not MY Dad!"
I finally got used to that idea (although I'm not sure MY children have), and we adapt. I've written before about needing to adapt to the "new normal" once cancer is diagnosed. I guess I hadn't realized that the new normal can include such good things as "They can't find any cancer."
The results of this scan are not the last words in the story of my melanoma. I still have much therapy to undergo. I will have more evaluation down the line to assess for any residual cancer. There are still risks of recurrence. But I'm starting to adapt to the concept that all of the tumors are gone. And the best thing I can think of to do in celebration? Just keep breathing, as long as I can.
Thursday, March 27, 2014
A HOLE IN MY SOCK
So I noticed a hole in my sock this morning. Now, to most people, that's not much of a life event, but to me -- well, it's pretty damn significant. Allow me to explain:
Slightly over a year ago I learned the results of a biopsy from a mass in my parotid (salivary) gland. We were visiting in Portland for a few days when this occurred and the news was a pretty shocking blow, as one may understand. It's bad enough to have any melanoma in your body, but we didn't know if this discovery represented a single, isolated tumor or if it was just the tip of the iceberg with more tumor already present elsewhere, typical for melanoma. Prognosis and possible treatment depended on the results, then, of a pending whole-body CT scan and PET scan to assess for metastatic disease.
Emotionally at this time, I was wallowing. In the course of a few days I had gone from getting back onto our boat and continuing our dream cruise to the Bahamas to absolute uncertainty for my future. This uncertainty was so profound I found it difficult to concentrate and almost impossible to focus my thoughts toward any rational resolution of the situation.
Since I had to stay in Portland for the imaging studies, I took Elaine to the airport so she could get back to the boat in Florida, get some important papers and set the boat up for a longer absence than we had initially planned. We were only going to be gone four days when we left Florida, so I packed pretty lightly. It had been so warm I had been wearing sandals most of the time, but at the last minute I threw in one pair of socks since it was winter and we were heading to the Pacific Northwet. After dropping Elaine off, I headed to a shopping mall to buy another pair of socks as I had been wearing my one pair since we had arrived. It was then that I became aware that I was in even worse emotional shape than I first thought. It had been bad enough to get the news of the cancer, but now I was without Elaine, who was more of a support than I had realized.
I walked into a store, looking to buy one pair of athletic socks, but felt like a little kid walking into a shop of horrors. I was surrounded by sporting goods and athletic equipment -- things that I would normally be interested in -- but they just reminded me that I might not live long enough to ever use anything like that again. And the socks! They only came in packages of 12! Why the hell should I buy 12 pair of socks when I might be full of cancer and not live long enough to even wear out the one pair I currently owned? Totally defeated, I left the sore empty-handed.
Fast-forward a few days. Elaine had returned, I had my CT/PET scan and we were awaiting the results. We were distracting ourselves by going to movies. After parking the rental car, and as we were walking toward the theater, my phone rang -- it was the surgeon with the results of the scans. The scans had shown no other evidence of disease. At least now we would be able to develop a strategy to attack this tumor, a strategy that would be consistent with living longer.
My first words to Elaine after getting the results? "Now I can go buy those socks!"
I did go buy the socks -- all 12 pair -- and, although the treatment strategy has taken a few twists and turns, I'm still kickin'. And my feet are covered with the socks that are now starting to wear out!
Slightly over a year ago I learned the results of a biopsy from a mass in my parotid (salivary) gland. We were visiting in Portland for a few days when this occurred and the news was a pretty shocking blow, as one may understand. It's bad enough to have any melanoma in your body, but we didn't know if this discovery represented a single, isolated tumor or if it was just the tip of the iceberg with more tumor already present elsewhere, typical for melanoma. Prognosis and possible treatment depended on the results, then, of a pending whole-body CT scan and PET scan to assess for metastatic disease.
Emotionally at this time, I was wallowing. In the course of a few days I had gone from getting back onto our boat and continuing our dream cruise to the Bahamas to absolute uncertainty for my future. This uncertainty was so profound I found it difficult to concentrate and almost impossible to focus my thoughts toward any rational resolution of the situation.
Since I had to stay in Portland for the imaging studies, I took Elaine to the airport so she could get back to the boat in Florida, get some important papers and set the boat up for a longer absence than we had initially planned. We were only going to be gone four days when we left Florida, so I packed pretty lightly. It had been so warm I had been wearing sandals most of the time, but at the last minute I threw in one pair of socks since it was winter and we were heading to the Pacific Northwet. After dropping Elaine off, I headed to a shopping mall to buy another pair of socks as I had been wearing my one pair since we had arrived. It was then that I became aware that I was in even worse emotional shape than I first thought. It had been bad enough to get the news of the cancer, but now I was without Elaine, who was more of a support than I had realized.
I walked into a store, looking to buy one pair of athletic socks, but felt like a little kid walking into a shop of horrors. I was surrounded by sporting goods and athletic equipment -- things that I would normally be interested in -- but they just reminded me that I might not live long enough to ever use anything like that again. And the socks! They only came in packages of 12! Why the hell should I buy 12 pair of socks when I might be full of cancer and not live long enough to even wear out the one pair I currently owned? Totally defeated, I left the sore empty-handed.
Fast-forward a few days. Elaine had returned, I had my CT/PET scan and we were awaiting the results. We were distracting ourselves by going to movies. After parking the rental car, and as we were walking toward the theater, my phone rang -- it was the surgeon with the results of the scans. The scans had shown no other evidence of disease. At least now we would be able to develop a strategy to attack this tumor, a strategy that would be consistent with living longer.
My first words to Elaine after getting the results? "Now I can go buy those socks!"
I did go buy the socks -- all 12 pair -- and, although the treatment strategy has taken a few twists and turns, I'm still kickin'. And my feet are covered with the socks that are now starting to wear out!
Saturday, March 22, 2014
STATISTICALLY SPEAKING...
Quantitative results of in-depth analysis should be a good thing, one would think.
As a practicing physician I made many, many decisions in the care of patients, and a surprising number of those decisions did not have rigorous scientific studies backing them up. They may have been based on personal experience, accumulated opinions of experts or even some clinical data that suggested a certain procedure, or a specific drug, would provide the anticipated clinical outcome. That's the way a lot of medical decisions are made, although more and more effort is going into measuring and consolidating the clinical evidence in validated research settings to allow true evidence-based decisions.
As a scientist, well, valid analysis of experimental findings is everything. I recall as a graduate student way too many nights in the library poring over recently published scientific papers and dissecting the methods, the results, the analysis and the conclusions of the authors. It was a star in your cap at Journal Club if you found errors in either the selection or the execution of the statistical analysis. Their statistics approach could mean the difference between good research with a valid conclusion or a "filler" paper meant to pad the author's Curriculum Vitae.
In both the clinical and scientific research arenas one is striving for decision-making support and hoping that the authors of the studies were true adherents of scientific methods and principles. However… it's not always that way when statistics are involved. Although true attribution is vague, Mark Twain popularized the phrase "There are three types of falsehoods; lies, damed lies and statistics."
There were many instances in those research papers in which the authors were using their data to tell their story and therefore presented the numbers in a manner that supported their position. Similar numerical obfuscation abounds in both marketing and politics. Numbers presented supporting a particular point of view are to be suspect in proportionality to the vested interests of the presenters.
This brings me to my point - cancer patients should not read statistical analyses of outcome data for their cancer. This is an incredibly difficult thing to avoid. When one is first diagnosed with cancer it is natural to research every possible presentation on the subject. Many options abound - from true scientific literature to hucksters on the internet - and all are backed by numbers. Five-year survival rates, regression percentages, response fractions, dose-response curves, etc. etc. If you are a cancer patient, ignore them! They are not the truth you are looking for! They do not mean that if you do this, the results will, inevitably, be that. The scientific data are meant to nudge progress over time and support clinical decisions of the treatment providers. The marketing data of the hucksters are meant to separate you from your money. No one can tell you the odds of your responding to medication, or even of your own survival with accuracy any more than they can predict the March Madness outcomes.
This sentiment comes after reading a recent paper on the outcomes of the investigational drug I am (likely) being given. The paper hailed the fantastic outcomes of previous clinical studies with this drug and touted it as THE new therapeutic option for those with advanced melanoma. This all sounds good - until you get down to the final numbers. The statistical improvement in survival was about 20 months. Twenty month survival was not the conclusion I was looking for, but that's what I came away with. Now I could parse their conclusions and re-run all the numbers, but I suspect they did a good job and my quantitative analysis would come out the same as theirs. However, the study had a number of variables -- response rates, dosage differences, prior treatments, etc. that contributed to an aggregate 20 month enhancement of survival. I know, intellectually, that this doesn't mean that I only have 20 months to live but, emotionally, it is difficult to ignore that bottom line number.
But I can ignore it, and ignore their statistical analysis, and say that in my experience with this drug, I am 100% alive!
As a practicing physician I made many, many decisions in the care of patients, and a surprising number of those decisions did not have rigorous scientific studies backing them up. They may have been based on personal experience, accumulated opinions of experts or even some clinical data that suggested a certain procedure, or a specific drug, would provide the anticipated clinical outcome. That's the way a lot of medical decisions are made, although more and more effort is going into measuring and consolidating the clinical evidence in validated research settings to allow true evidence-based decisions.
As a scientist, well, valid analysis of experimental findings is everything. I recall as a graduate student way too many nights in the library poring over recently published scientific papers and dissecting the methods, the results, the analysis and the conclusions of the authors. It was a star in your cap at Journal Club if you found errors in either the selection or the execution of the statistical analysis. Their statistics approach could mean the difference between good research with a valid conclusion or a "filler" paper meant to pad the author's Curriculum Vitae.
In both the clinical and scientific research arenas one is striving for decision-making support and hoping that the authors of the studies were true adherents of scientific methods and principles. However… it's not always that way when statistics are involved. Although true attribution is vague, Mark Twain popularized the phrase "There are three types of falsehoods; lies, damed lies and statistics."
There were many instances in those research papers in which the authors were using their data to tell their story and therefore presented the numbers in a manner that supported their position. Similar numerical obfuscation abounds in both marketing and politics. Numbers presented supporting a particular point of view are to be suspect in proportionality to the vested interests of the presenters.
This brings me to my point - cancer patients should not read statistical analyses of outcome data for their cancer. This is an incredibly difficult thing to avoid. When one is first diagnosed with cancer it is natural to research every possible presentation on the subject. Many options abound - from true scientific literature to hucksters on the internet - and all are backed by numbers. Five-year survival rates, regression percentages, response fractions, dose-response curves, etc. etc. If you are a cancer patient, ignore them! They are not the truth you are looking for! They do not mean that if you do this, the results will, inevitably, be that. The scientific data are meant to nudge progress over time and support clinical decisions of the treatment providers. The marketing data of the hucksters are meant to separate you from your money. No one can tell you the odds of your responding to medication, or even of your own survival with accuracy any more than they can predict the March Madness outcomes.
This sentiment comes after reading a recent paper on the outcomes of the investigational drug I am (likely) being given. The paper hailed the fantastic outcomes of previous clinical studies with this drug and touted it as THE new therapeutic option for those with advanced melanoma. This all sounds good - until you get down to the final numbers. The statistical improvement in survival was about 20 months. Twenty month survival was not the conclusion I was looking for, but that's what I came away with. Now I could parse their conclusions and re-run all the numbers, but I suspect they did a good job and my quantitative analysis would come out the same as theirs. However, the study had a number of variables -- response rates, dosage differences, prior treatments, etc. that contributed to an aggregate 20 month enhancement of survival. I know, intellectually, that this doesn't mean that I only have 20 months to live but, emotionally, it is difficult to ignore that bottom line number.
But I can ignore it, and ignore their statistical analysis, and say that in my experience with this drug, I am 100% alive!
Wednesday, March 12, 2014
WHAT GOES AROUND...
I had my fourth infusion this week. Prior to getting the meds I always have a visit with the oncologist involved in this clinical trial to review how everything has been going. All my labs are checked, we review any side effects, he does a physical exam and we talk about what's up next. It was during this last part that my oncologist said, in a nonchalant manner, "We're going to save your life, and get this drug approved."
Now, I know that these drugs are extending my life and I'm pretty excited about that. In my conversations with the oncologist I don't hold back about how pleased I am that I'm responding to these drugs. It just kind of took me by surprise that to him, saving my life seemed so matter-of-fact.
It got me to thinking about my clinical career. I spent about 25 years practicing medicine and, as an anesthesiologist, saved many lives. Although I don't think I was nonchalant about it, it also didn't seem to be terribly extraordinary. I did what I was trained to do, I did what I had anticipated doing when I initially went into medicine. Although it had an incredibly profound effect on the patient, to me, it was just part of what I did as a physician. Not to say that it wasn't rewarding to see positive clinical outcomes in challenging situations, but I didn't usually think of it as a cause for celebration -- but in retrospect, I suspect the patients and their families did.
The concept of karma as a principle of causality is a central motif of most Asian religions. In these religions, good intent and good deeds in the present tend to affect what will happen to you in the future part of your life as well as in future lives. These religions teach that like deeds lead to like effects - kind of like a codified Golden Rule, or "you reap what you sow," although it goes beyond just behavior to include attitude, desires and intent that direct any behaviors. In this way, these religions encourage one to lead an ethical existence and to seek to live a moral life.
I can't say I've lead a perfect existence, but a driving factor for what I have done throughout my life has been putting myself in a position to help others. This value culminated in my going into clinical medicine as a career. Although there are semantic subtleties between a job and a profession, my "job" as a physician was to help others. Perhaps, since medicine is a profession, it would be more correct to say that I saw my role in society as one who helps people maintain, or improve, their health. Since staying alive improves health, I helped people stay alive.
Even though I have acknowledged the concept of karma for decades, I never really thought, at the time, that what I was doing was accruing "karmic capital," but, perhaps, that is why I am now having my life saved.
Now, I know that these drugs are extending my life and I'm pretty excited about that. In my conversations with the oncologist I don't hold back about how pleased I am that I'm responding to these drugs. It just kind of took me by surprise that to him, saving my life seemed so matter-of-fact.
It got me to thinking about my clinical career. I spent about 25 years practicing medicine and, as an anesthesiologist, saved many lives. Although I don't think I was nonchalant about it, it also didn't seem to be terribly extraordinary. I did what I was trained to do, I did what I had anticipated doing when I initially went into medicine. Although it had an incredibly profound effect on the patient, to me, it was just part of what I did as a physician. Not to say that it wasn't rewarding to see positive clinical outcomes in challenging situations, but I didn't usually think of it as a cause for celebration -- but in retrospect, I suspect the patients and their families did.
The concept of karma as a principle of causality is a central motif of most Asian religions. In these religions, good intent and good deeds in the present tend to affect what will happen to you in the future part of your life as well as in future lives. These religions teach that like deeds lead to like effects - kind of like a codified Golden Rule, or "you reap what you sow," although it goes beyond just behavior to include attitude, desires and intent that direct any behaviors. In this way, these religions encourage one to lead an ethical existence and to seek to live a moral life.
I can't say I've lead a perfect existence, but a driving factor for what I have done throughout my life has been putting myself in a position to help others. This value culminated in my going into clinical medicine as a career. Although there are semantic subtleties between a job and a profession, my "job" as a physician was to help others. Perhaps, since medicine is a profession, it would be more correct to say that I saw my role in society as one who helps people maintain, or improve, their health. Since staying alive improves health, I helped people stay alive.
Even though I have acknowledged the concept of karma for decades, I never really thought, at the time, that what I was doing was accruing "karmic capital," but, perhaps, that is why I am now having my life saved.
We drive into the future using only our rear-view mirror -- Marshal McLuhan
Thursday, March 6, 2014
SURVIVORSHIP - WHAT'S UP WITH THAT?
In December I told myself that I wasn't really that sick - that I'd somehow keep on going and figure out how to tame this cancer. But there was part of me that knew this is a deadly disease and over 9,000 people in the US die from melanoma every year. So even though I held onto hope to keep living, I had to come to terms with my own mortality. It may have been uncomfortable, but, under the circumstances it was necessary.
Fast forward to today when I'm truly optimistic about sticking around for a while. Although death is inevitable for all of us, putting it off as long as possible seems like a good idea - there's too many things I still want to do.
But between that acceptance of impending mortality, and then, a couple of months later, seeing future horizons expanding, there's an emotional disconnect. Part of me had to concede that I was likely to die soon and now that part is saying "Whoa, what's going on here? Why aren't you dead?" As much as I like the current outcome of my therapy, there needs to be a reconciliation with the part of me that expected death.
This is not a terribly unique situation. People who have survived plane crashes when other have died, for instance, or military personnel after being in action can get into a "survivor's guilt" mode. It is, thankfully, more common now with cancer patients who benefit from advanced therapy. It is still something that has to be dealt with, but it's a burden I happily bear.
As I did some research on cancer survivorship, I was surprised at the wide range of meaning this has to different people. Some people say you become a cancer survivor the day you are diagnosed and remain one until you die. Others argue that one is a survivor only after the successful therapeutic fight against your disease. I am not going to align with any one camp on this. My general view is that if you have cancer and are actively fighting it, or if you have had cancer and you are still alive, you are a survivor. Regardless of anyone's definition, cancer survivors are different people than who they were before any cancer diagnosis. "Normal" went away the day they heard the diagnosis. From that point on there becomes a series of resets to "new normals" without ever having the option of going back, even if the disease is beaten.
The new normal often includes challenging questioning about the selectivity of survival -- why did I survive and others didn't. About the meaning behind being a survivor -- does this mean there's something I still need to do, that I'm obligated to do? About the durability of survival -- is this just a short respite before I'm back in the same threatened position? Questions that may not have answers, but still need to be recognized.
Although good advice exists on many practical activities for cancer survivors (consolidating medical records, keeping or developing a healthy lifestyle through good nutritional and exercise habits), there aren't comprehensive guidebooks that will work for everyone. Making the effort to chart one's own course after the storm is still a good exercise, even if the wind is calm and the water flat.
Fast forward to today when I'm truly optimistic about sticking around for a while. Although death is inevitable for all of us, putting it off as long as possible seems like a good idea - there's too many things I still want to do.
But between that acceptance of impending mortality, and then, a couple of months later, seeing future horizons expanding, there's an emotional disconnect. Part of me had to concede that I was likely to die soon and now that part is saying "Whoa, what's going on here? Why aren't you dead?" As much as I like the current outcome of my therapy, there needs to be a reconciliation with the part of me that expected death.
This is not a terribly unique situation. People who have survived plane crashes when other have died, for instance, or military personnel after being in action can get into a "survivor's guilt" mode. It is, thankfully, more common now with cancer patients who benefit from advanced therapy. It is still something that has to be dealt with, but it's a burden I happily bear.
As I did some research on cancer survivorship, I was surprised at the wide range of meaning this has to different people. Some people say you become a cancer survivor the day you are diagnosed and remain one until you die. Others argue that one is a survivor only after the successful therapeutic fight against your disease. I am not going to align with any one camp on this. My general view is that if you have cancer and are actively fighting it, or if you have had cancer and you are still alive, you are a survivor. Regardless of anyone's definition, cancer survivors are different people than who they were before any cancer diagnosis. "Normal" went away the day they heard the diagnosis. From that point on there becomes a series of resets to "new normals" without ever having the option of going back, even if the disease is beaten.
The new normal often includes challenging questioning about the selectivity of survival -- why did I survive and others didn't. About the meaning behind being a survivor -- does this mean there's something I still need to do, that I'm obligated to do? About the durability of survival -- is this just a short respite before I'm back in the same threatened position? Questions that may not have answers, but still need to be recognized.
Although good advice exists on many practical activities for cancer survivors (consolidating medical records, keeping or developing a healthy lifestyle through good nutritional and exercise habits), there aren't comprehensive guidebooks that will work for everyone. Making the effort to chart one's own course after the storm is still a good exercise, even if the wind is calm and the water flat.
Wednesday, February 26, 2014
KEEPING AN EVEN KEEL
How things have changed from a couple of months ago! It was pretty rough sailing then with increasing pain, tumors getting larger, less and less energy and more and more physical limitations.
The phrase "keeping and even keel," of course, is a nautical term for steadiness and/or control of a vessel, regardless of the weather and sea conditions. Sometimes it's easier than others to keep an even keel and I find it much easier now than in December and January.
It's interesting to look back and recall how my perspective was closing in on me.
Do-able distances were getting shorter -- for walking, for daily area activities and for traveling. At Christmas I had to pass on a day of sightseeing in the city and a trip to Alcatraz with the family because I just didn't have the stamina for that type of outing. I hesitated going too far from the house for too long, concerned that I would get over-fatigued and pay the price for it later with increased pain.
Time horizons were shrinking as well. Rather than thinking about plans for Spring or Summer, I could only see out a few weeks, or even days. I just didn't have the confidence in my health to venture any plans beyond that.
The sea was choppy and getting more turbulent day by day. I was stuck in open water, not sure of my course and my harbor of refuge, if I were to reach one, was still distant.
With a positive response to the medications I am on, however, my perspective is getting back to normal. I feel comfortable leaving the house for the day, going shopping and out for lunch without physically taxing myself. Activities like running, tennis and biking are renewed possibilities. We are even making plans to get back on to the boat in a couple of months and cruise with friends down to the Bahamas.
That's not to say I still don't have to work at keeping an even keel. As well as I am responding to the medication, there is just not enough experience with these new immunotherapy protocols to know how long they will work and wether or not the effect is durable. I don't know how long I will need to have these bi-weekly infusions and I don't know how long the cancer will be repressed.
I am also still testing, and learning, my current physical limits. Is my increased pain today a result of my increased activity yesterday? Will my side effects get worse, or my immune response diminish if I push myself too hard? Will there be days I will need to restrain myself from doing what I want for the longer term benefit of my health?
These questions, though, will have to be considered in the context of getting back onto the boat. That is something I look forward to with great anticipation. During those most difficult days and nights, to help me remain steady, in control and centered, I imagined myself at the helm of my boat, keeping an even keel.
The phrase "keeping and even keel," of course, is a nautical term for steadiness and/or control of a vessel, regardless of the weather and sea conditions. Sometimes it's easier than others to keep an even keel and I find it much easier now than in December and January.
It's interesting to look back and recall how my perspective was closing in on me.
Do-able distances were getting shorter -- for walking, for daily area activities and for traveling. At Christmas I had to pass on a day of sightseeing in the city and a trip to Alcatraz with the family because I just didn't have the stamina for that type of outing. I hesitated going too far from the house for too long, concerned that I would get over-fatigued and pay the price for it later with increased pain.
Time horizons were shrinking as well. Rather than thinking about plans for Spring or Summer, I could only see out a few weeks, or even days. I just didn't have the confidence in my health to venture any plans beyond that.
The sea was choppy and getting more turbulent day by day. I was stuck in open water, not sure of my course and my harbor of refuge, if I were to reach one, was still distant.
With a positive response to the medications I am on, however, my perspective is getting back to normal. I feel comfortable leaving the house for the day, going shopping and out for lunch without physically taxing myself. Activities like running, tennis and biking are renewed possibilities. We are even making plans to get back on to the boat in a couple of months and cruise with friends down to the Bahamas.
That's not to say I still don't have to work at keeping an even keel. As well as I am responding to the medication, there is just not enough experience with these new immunotherapy protocols to know how long they will work and wether or not the effect is durable. I don't know how long I will need to have these bi-weekly infusions and I don't know how long the cancer will be repressed.
I am also still testing, and learning, my current physical limits. Is my increased pain today a result of my increased activity yesterday? Will my side effects get worse, or my immune response diminish if I push myself too hard? Will there be days I will need to restrain myself from doing what I want for the longer term benefit of my health?
These questions, though, will have to be considered in the context of getting back onto the boat. That is something I look forward to with great anticipation. During those most difficult days and nights, to help me remain steady, in control and centered, I imagined myself at the helm of my boat, keeping an even keel.
Tuesday, February 18, 2014
MELANOMA - TIME FOR STAGE 5?
The normal staging to describe the level of involvement, or severity, of melanoma is a four-step scale, Stage 1 through Stage 4, with Stage 1 representing a lesion limited to the skin surface but progression of the disease to include distant metastases, usually involving major organs such as liver, lung and/or brain, is described as Stage 4. There are technical definitions of the interim stages and sub-stages but, basically, the higher the number, the worse the disease and the greater degree of mortality. Up to just a few years ago, Stage 4 was the advanced form of the disease which usually meant a limited future lifespan.
I was diagnosed as Stage 4 in November of last year with metastatic disease in my head/neck, leg and lungs. Applying my knowledge of advanced melanoma (which was as current as Medical School, circa 1982), I assumed I had only months to live. Perspective in my life rapidly changed. Existential thoughts crowded out most other reasoning and emotions crescendoed and surfaced regularly. Meditation was a necessity to keep an even keel while navigating this turbulent course but it gradually allowed me to put mortality into perspective, as uncomfortable as that thought was.
All the time this was going on, the scientist in me kept up the research on current and future therapies for melanoma, now that I had a vested interest. Through this research I discovered an approved therapeutic drug for Stage 4 which had shown some response and I found a nearby Phase III clinical trial for an investigational drug which had shown impressive results in the earlier trial phases. The result of my research is my participation in the clinical trial, receiving standard Stage 4 therapy of Yervoy (ipilimumab) combined with either nivolumab or a placebo.
My first infusion of these drugs was on January 7th and today, February 18th, I am receiving my third infusion in a protocol that lasts a total of about a year. So, I have been exposed to these drugs for 6 weeks now. The first few weeks were a bit rough, but things are definitely looking up. I can no longer feel any of the metastatic bumps that were on my scalp - they are just plain gone! There is some tenderness, still, in my neck, but otherwise things are pretty much back to normal there. The chronic cough I have had since November is gone completely, as are any pulmonary symptoms like shortness of breath or bronchospasm. The largest tumor, which was in my leg, has shrunk to the point of being asymptomatic and difficult to find.
Although the clinical trial is double-blinded (no one knows if I am receiving the investigational drug or a placebo), the overall consensus in my oncologist's office is that I'm getting the active drug, since they have never seen such a rapid clinical response with only the Yervoy. (I'll be getting imaging studies in a few weeks to quantitate my response.)
Now that there is a few years of experience with immunotherapy drugs targeted at melanoma, there is a sub-population of patients with no evidence of disease (NED) following treatment. People are reluctant to use the word "cure" when it comes to these patients, since melanoma has such a history of recurrence, but these new drugs may be changing that paradigm. For now, if no active disease can be found through post-treatment evaluations such as CT scans, MRIs and PET scans, the terms "remission," "dormancy" or just "no evidence of disease" are being used.
Until there is a level of confidence and comfort using the word "cure," I propose that the taxonomy for NED following immunotherapy for melanoma be more consistent with the optimistic future progression of the disease and be referred to as "Stage 5."
Wouldn't it be nice to see movement from Stage 4 to Stage 5 be the expectation for those afflicted with melanoma?
I was diagnosed as Stage 4 in November of last year with metastatic disease in my head/neck, leg and lungs. Applying my knowledge of advanced melanoma (which was as current as Medical School, circa 1982), I assumed I had only months to live. Perspective in my life rapidly changed. Existential thoughts crowded out most other reasoning and emotions crescendoed and surfaced regularly. Meditation was a necessity to keep an even keel while navigating this turbulent course but it gradually allowed me to put mortality into perspective, as uncomfortable as that thought was.
All the time this was going on, the scientist in me kept up the research on current and future therapies for melanoma, now that I had a vested interest. Through this research I discovered an approved therapeutic drug for Stage 4 which had shown some response and I found a nearby Phase III clinical trial for an investigational drug which had shown impressive results in the earlier trial phases. The result of my research is my participation in the clinical trial, receiving standard Stage 4 therapy of Yervoy (ipilimumab) combined with either nivolumab or a placebo.
My first infusion of these drugs was on January 7th and today, February 18th, I am receiving my third infusion in a protocol that lasts a total of about a year. So, I have been exposed to these drugs for 6 weeks now. The first few weeks were a bit rough, but things are definitely looking up. I can no longer feel any of the metastatic bumps that were on my scalp - they are just plain gone! There is some tenderness, still, in my neck, but otherwise things are pretty much back to normal there. The chronic cough I have had since November is gone completely, as are any pulmonary symptoms like shortness of breath or bronchospasm. The largest tumor, which was in my leg, has shrunk to the point of being asymptomatic and difficult to find.
Although the clinical trial is double-blinded (no one knows if I am receiving the investigational drug or a placebo), the overall consensus in my oncologist's office is that I'm getting the active drug, since they have never seen such a rapid clinical response with only the Yervoy. (I'll be getting imaging studies in a few weeks to quantitate my response.)
Now that there is a few years of experience with immunotherapy drugs targeted at melanoma, there is a sub-population of patients with no evidence of disease (NED) following treatment. People are reluctant to use the word "cure" when it comes to these patients, since melanoma has such a history of recurrence, but these new drugs may be changing that paradigm. For now, if no active disease can be found through post-treatment evaluations such as CT scans, MRIs and PET scans, the terms "remission," "dormancy" or just "no evidence of disease" are being used.
Until there is a level of confidence and comfort using the word "cure," I propose that the taxonomy for NED following immunotherapy for melanoma be more consistent with the optimistic future progression of the disease and be referred to as "Stage 5."
Wouldn't it be nice to see movement from Stage 4 to Stage 5 be the expectation for those afflicted with melanoma?
Friday, February 14, 2014
BAD NEWS, GOOD NEWS
Well, I think I pretty much covered the bad news on my last post, so it's probably time for some good news.This past year has been such a volatile journey with all of its ups and downs that it kind of reminds me of a story from my distant past.
When I was a pre-teen, I would occasionally visit an uncle and aunt on their farm in the Midwest. Uncle Bill quickly became a favorite uncle when he let me drive his old Ford tractor around the farmyard. His wife, Aunt Adeline, was a reserved farm wife who seemed to always be cooking, but also always engaged in conversation with company in the huge old farmhouse kitchen where family, friends and farmhands congregated. The structure of her conversations, however, was more "story telling" than just relaying information, so listening to her was very entertaining. One account I remember well was when she described Uncle Bill's "accident:"
The bad news was that a severe summer storm damaged the roof of the barn but the good news was that we had spare metal panels to replace the damaged ones, so Bill climbed up on the roof to make the repair. The bad news was that he lost his footing and started sliding off the roof. The good news is that there was a large haystack under him. The bad news is that there were several pitchforks in the haystack. The good news is that he missed all of the pitchforks. The bad news is that he missed the haystack.
Luckily, he healed from his injuries and it became just one more historical event in the life of a farmer, but it often reminds me of the interplay of chance and good news/bad news.
My good news is that the worst of the pain seems to be over and I'm seeing some progress toward where I want to be rather than where I was. In just the past few days I've noticed an upsurge in energy, feeling stronger and able to get much more done in a day without having to take an afternoon nap. I have not needed pain meds for about a week, my chronic, non-productive cough is almost gone and the tumors that I have been able to feel (on my scalp, in my neck and in my leg) have either disappeared or been reduced in size by at least 50%. The severe pain in my jaw and the limited range of motion of my TMJ have almost completely resolved. Several areas on my skin, which I assume were basal cell or early squamous cell carcinomas, got very inflamed, scabbed over, and are now just flat white scars.
All of this in the first six weeks and after just the first 2 of 4 combination infusions (the standard Stage 4 drug Yervoy plus either the investigational drug or a placebo). When this phase is complete, then, I will receive a series of infusions every two weeks of just the investigational drug. This adds to the good news in that I am, at least to some degree or another, a "responder," and the drug(s) are working as intended.
I still have a ways to go, however. With all of my renewed energy, I worked out for a couple of hours the other day, but paid the price later with some significant abdominal pain from my liver reacting to too much activity. This is likely just a bothersome side effect of the drugs (along with a rash and total-body itching) and being somewhat hypermetabolic, so I'll back off a bit and take things easier while my body is still at war with the cancer. There is still risk of more significant side effects as I receive more infusions.
All in all, though, more good news than bad news!
When I was a pre-teen, I would occasionally visit an uncle and aunt on their farm in the Midwest. Uncle Bill quickly became a favorite uncle when he let me drive his old Ford tractor around the farmyard. His wife, Aunt Adeline, was a reserved farm wife who seemed to always be cooking, but also always engaged in conversation with company in the huge old farmhouse kitchen where family, friends and farmhands congregated. The structure of her conversations, however, was more "story telling" than just relaying information, so listening to her was very entertaining. One account I remember well was when she described Uncle Bill's "accident:"
The bad news was that a severe summer storm damaged the roof of the barn but the good news was that we had spare metal panels to replace the damaged ones, so Bill climbed up on the roof to make the repair. The bad news was that he lost his footing and started sliding off the roof. The good news is that there was a large haystack under him. The bad news is that there were several pitchforks in the haystack. The good news is that he missed all of the pitchforks. The bad news is that he missed the haystack.
Luckily, he healed from his injuries and it became just one more historical event in the life of a farmer, but it often reminds me of the interplay of chance and good news/bad news.
My good news is that the worst of the pain seems to be over and I'm seeing some progress toward where I want to be rather than where I was. In just the past few days I've noticed an upsurge in energy, feeling stronger and able to get much more done in a day without having to take an afternoon nap. I have not needed pain meds for about a week, my chronic, non-productive cough is almost gone and the tumors that I have been able to feel (on my scalp, in my neck and in my leg) have either disappeared or been reduced in size by at least 50%. The severe pain in my jaw and the limited range of motion of my TMJ have almost completely resolved. Several areas on my skin, which I assume were basal cell or early squamous cell carcinomas, got very inflamed, scabbed over, and are now just flat white scars.
All of this in the first six weeks and after just the first 2 of 4 combination infusions (the standard Stage 4 drug Yervoy plus either the investigational drug or a placebo). When this phase is complete, then, I will receive a series of infusions every two weeks of just the investigational drug. This adds to the good news in that I am, at least to some degree or another, a "responder," and the drug(s) are working as intended.
I still have a ways to go, however. With all of my renewed energy, I worked out for a couple of hours the other day, but paid the price later with some significant abdominal pain from my liver reacting to too much activity. This is likely just a bothersome side effect of the drugs (along with a rash and total-body itching) and being somewhat hypermetabolic, so I'll back off a bit and take things easier while my body is still at war with the cancer. There is still risk of more significant side effects as I receive more infusions.
All in all, though, more good news than bad news!
Saturday, February 8, 2014
NO PAIN, NO GAIN?
The frequency of my writing has dropped off a bit - primarily due to how I've been feeling. Everyone seems to react differently to ipilimumab, the known drug I am getting (I'm also getting either an investigational drug or a placebo), but a significant reaction for me has been pain. Although every day seems to be different, a typical day starts out okay with minimal discomfort, especially if I have had a restful night. Throughout the day, depending on my activity level, I gradually become more and more aware of discomfort in the area of my tumors. Usually by mid-afternoon I've tried to rest and practice some relaxation techniques, but if that doesn't make things better, it's time for the narcotics. One pill a day does it for the average day- on the rare day I might need two.
I'm convinced that the pain is a result of an inflammatory reaction precipitated by the drug and represents what I want to happen - my immune system attacking the cancer tissue.
In general, I've always been the type of person that feels hard work tends to be rewarded.
When I was involved with competitive sports I felt that if I worked harder I could compete better. In the workplace, if I wanted the best outcomes I had to work hard for them. The more effort put into something, the more reward was realized, and, usually, the hard work was accompanied by at least some level of sacrifice or discomfort. I once heard a story that early in his boxing career Cassius Clay (later Muhammad Ali) said he only started counting his daily sit-ups after they started hurting - they were the only ones that meant anything.
With this ethic in mind, I feel like I should be working harder to rid my body of cancer. But, under the circumstances, there's not much more I can do. I'm getting good nutrition, I'm using relaxation and meditation techniques to calm my mind and emotions, I'm getting adequate rest, I'm keeping a positive attitude. With a more typical health challenge I'd do more, work out more, actively do something else that would improve the situation. Right now I have to convince myself that the best thing I can do is stand back and let my immune system get this fight underway.
My immune system is obviously working hard. It's working hard enough that I feel the pain - and, hopefully, will realize the gain.
I'm convinced that the pain is a result of an inflammatory reaction precipitated by the drug and represents what I want to happen - my immune system attacking the cancer tissue.
In general, I've always been the type of person that feels hard work tends to be rewarded.
When I was involved with competitive sports I felt that if I worked harder I could compete better. In the workplace, if I wanted the best outcomes I had to work hard for them. The more effort put into something, the more reward was realized, and, usually, the hard work was accompanied by at least some level of sacrifice or discomfort. I once heard a story that early in his boxing career Cassius Clay (later Muhammad Ali) said he only started counting his daily sit-ups after they started hurting - they were the only ones that meant anything.
With this ethic in mind, I feel like I should be working harder to rid my body of cancer. But, under the circumstances, there's not much more I can do. I'm getting good nutrition, I'm using relaxation and meditation techniques to calm my mind and emotions, I'm getting adequate rest, I'm keeping a positive attitude. With a more typical health challenge I'd do more, work out more, actively do something else that would improve the situation. Right now I have to convince myself that the best thing I can do is stand back and let my immune system get this fight underway.
My immune system is obviously working hard. It's working hard enough that I feel the pain - and, hopefully, will realize the gain.
Monday, January 27, 2014
IF YOU ARE GOING THROUGH HELL...
So I'm sitting in an "infusion room" at the oncologist's office. Nice room, although definitely clinical and functional. A few "Lazy Boy" type lounge chairs for the patients and some generic waiting room chairs for friends and family. People coming and going, NPR talk radio (this is San Francisco!) in the background and conversations coming and going along with the changing faces. Some infusions only last about 15 minutes, others, like mine, several hours, so there's a wide range of subject matter over time.
Since the function of the room centers around the treatment of cancer, they are not the same conversations one would have most anywhere else. Stories get shared about diagnoses, about complex and life-saving surgeries, about having, and keeping, hope in a difficult circumstance and about how one faces the fear that inevitably goes with the diagnosis.
It got me thinking about how I have reacted to fearful situations in my past - luckily few. Of the two that came to mind, one was life-threatening and the other one I felt was life threatening when it probably wasn't.
The first was while I was a commercial diver and working to raise a vessel which had sunk in about 40 ft. of water. I was inside the hull placing air bags which would later be inflated to provide buoyancy. The vessel shifted and I was pinned inside with my air supply compromised. Although a very dangerous situation, I knew that my safety diver was nearby and would be aiding me soon. I released myself from any encumbrances (weight belt, harness, tool belt, etc.) to make it easier for my safety diver to pull me out and was trying to clear the lifting bags out of the way when I blacked out from lack of oxygen. I regained consciousness on deck, rested a bit, had lunch, then went back down and finished the job. Although I had felt fear during the event, it seemed to have helped me focus on what I needed to do to get out of the situation.
The second event was much different. I had always wanted to skydive, and several of my fellow medical students decided to give it a try. I made my reservation for the jump class and a first jump then drove out to the airfield the next weekend. None of my fellow students showed up, but I went ahead with the class and the jump anyway. On our final approach to the jump zone, the jump master had me climb out onto a small footplate under the wing and hang on to the strut. When he tapped me on the shoulder I was to let go and do what was taught in the class. Luckily it was a static-line jump and I didn't have to pull the ripcord because from the time I let go of the strut to the time that my chute opened, everything was a complete blank. Although I didn't think I felt all that nervous, or fearful, my mind reacted in a way that it didn't want to know what was going on, and basically stopped.
In each event, my immediate perception was that I was going through an unwanted situation, but my reaction, although not a conscious decision, was completely different. It seems that in the first situation I had at least some level of control and I kept moving (as long as able) to get myself out of the predicament. Jumping out of the airplane, however, must have been perceived as a surrender of all control (if not reason). The first reaction much more functional, the second with no functionality whatever.
So as I'm facing my own fears about what is happening to me now, one thing I need to keep in mind is to not stop but keep moving ahead. It reminds me of the quote from Sir Winston Churchill:
If you're going through hell, keep going.
Since the function of the room centers around the treatment of cancer, they are not the same conversations one would have most anywhere else. Stories get shared about diagnoses, about complex and life-saving surgeries, about having, and keeping, hope in a difficult circumstance and about how one faces the fear that inevitably goes with the diagnosis.
It got me thinking about how I have reacted to fearful situations in my past - luckily few. Of the two that came to mind, one was life-threatening and the other one I felt was life threatening when it probably wasn't.
The first was while I was a commercial diver and working to raise a vessel which had sunk in about 40 ft. of water. I was inside the hull placing air bags which would later be inflated to provide buoyancy. The vessel shifted and I was pinned inside with my air supply compromised. Although a very dangerous situation, I knew that my safety diver was nearby and would be aiding me soon. I released myself from any encumbrances (weight belt, harness, tool belt, etc.) to make it easier for my safety diver to pull me out and was trying to clear the lifting bags out of the way when I blacked out from lack of oxygen. I regained consciousness on deck, rested a bit, had lunch, then went back down and finished the job. Although I had felt fear during the event, it seemed to have helped me focus on what I needed to do to get out of the situation.
The second event was much different. I had always wanted to skydive, and several of my fellow medical students decided to give it a try. I made my reservation for the jump class and a first jump then drove out to the airfield the next weekend. None of my fellow students showed up, but I went ahead with the class and the jump anyway. On our final approach to the jump zone, the jump master had me climb out onto a small footplate under the wing and hang on to the strut. When he tapped me on the shoulder I was to let go and do what was taught in the class. Luckily it was a static-line jump and I didn't have to pull the ripcord because from the time I let go of the strut to the time that my chute opened, everything was a complete blank. Although I didn't think I felt all that nervous, or fearful, my mind reacted in a way that it didn't want to know what was going on, and basically stopped.
In each event, my immediate perception was that I was going through an unwanted situation, but my reaction, although not a conscious decision, was completely different. It seems that in the first situation I had at least some level of control and I kept moving (as long as able) to get myself out of the predicament. Jumping out of the airplane, however, must have been perceived as a surrender of all control (if not reason). The first reaction much more functional, the second with no functionality whatever.
So as I'm facing my own fears about what is happening to me now, one thing I need to keep in mind is to not stop but keep moving ahead. It reminds me of the quote from Sir Winston Churchill:
If you're going through hell, keep going.
Saturday, January 25, 2014
WE'LL SEE...
It's strange, what one remembers from Medical School over thirty years ago. Apparently, the following story made enough of an impression on me that I still recall it:
In the early 1800s, Alexis St. Martin, a 20-year-old Canadian Voyaguer, was accidentally shot in the abdomen by a musket at close range. Although believing that the wound was fatal, he was, nevertheless, taken to a nearby US Army post where a surgeon, Dr. William Beaumont, treated his wounds. Remarkably, St. Martin recovered, but was left with a healed opening between his skin and the interior of his stomach. Since not much was known about human digestion at the time, Dr. Beaumont realized he had a unique opportunity to find out what happens inside a living human stomach. For the next ten years or so, Beaumont used St. Martin in his studies and contributed to the medical knowledge of the time.
What does this have to do with me and my cancer? Well, yesterday I noticed a tender red lump on my lower leg and it appears to have an increased level of inflammation and pain today. I remember this small skin lesion from the past several years as a scaly patch of skin and had always assumed it was a fairly minor, and benign, sebhorreic keratosis which itched occasionally. Perhaps not. Perhaps it is a cancerous lesion that is reacting to an anti-cancer drug I have been given. Maybe it's a melanoma; maybe it's a squamous cell carcinoma; maybe it's a basal cell carcinoma. But if it is composed of cancer cells, it will be interesting to see how it reacts to the anti-cancer drug infusions I am getting. Even though some of my melanoma metastases can be felt as bumps in my skin, most of the cancer is internal and can't be seen at all, so no other cancer cells are as visible as this lesion on my leg. I may be given the opportunity to actually observe the reaction of cancer to the drugs I am receiving.
This may sound a little strange, to think of this as a positive development, but a lot of the stress, anxiety and worry during this cancer event comes from not knowing either what is happening, or from not knowing what to expect.
The drugs I am receiving (both the standard treatment and the investigational drug) do not work for everyone. Some people respond well, some respond to a degree and some respond hardly at all.
Maybe this lesion will be the predictor of things going on that I cannot see elsewhere in my body -- like the canary in the coal mine. Maybe it will be the harbinger of what is to come in the way of a reaction in other tumors -- like the first sprouts of Spring bulbs pushing toward the light. Maybe it will be the first line of a welcome song that says "you are a Responder -- this drug will fight your disease."
We'll see...
In the early 1800s, Alexis St. Martin, a 20-year-old Canadian Voyaguer, was accidentally shot in the abdomen by a musket at close range. Although believing that the wound was fatal, he was, nevertheless, taken to a nearby US Army post where a surgeon, Dr. William Beaumont, treated his wounds. Remarkably, St. Martin recovered, but was left with a healed opening between his skin and the interior of his stomach. Since not much was known about human digestion at the time, Dr. Beaumont realized he had a unique opportunity to find out what happens inside a living human stomach. For the next ten years or so, Beaumont used St. Martin in his studies and contributed to the medical knowledge of the time.
What does this have to do with me and my cancer? Well, yesterday I noticed a tender red lump on my lower leg and it appears to have an increased level of inflammation and pain today. I remember this small skin lesion from the past several years as a scaly patch of skin and had always assumed it was a fairly minor, and benign, sebhorreic keratosis which itched occasionally. Perhaps not. Perhaps it is a cancerous lesion that is reacting to an anti-cancer drug I have been given. Maybe it's a melanoma; maybe it's a squamous cell carcinoma; maybe it's a basal cell carcinoma. But if it is composed of cancer cells, it will be interesting to see how it reacts to the anti-cancer drug infusions I am getting. Even though some of my melanoma metastases can be felt as bumps in my skin, most of the cancer is internal and can't be seen at all, so no other cancer cells are as visible as this lesion on my leg. I may be given the opportunity to actually observe the reaction of cancer to the drugs I am receiving.
This may sound a little strange, to think of this as a positive development, but a lot of the stress, anxiety and worry during this cancer event comes from not knowing either what is happening, or from not knowing what to expect.
The drugs I am receiving (both the standard treatment and the investigational drug) do not work for everyone. Some people respond well, some respond to a degree and some respond hardly at all.
Maybe this lesion will be the predictor of things going on that I cannot see elsewhere in my body -- like the canary in the coal mine. Maybe it will be the harbinger of what is to come in the way of a reaction in other tumors -- like the first sprouts of Spring bulbs pushing toward the light. Maybe it will be the first line of a welcome song that says "you are a Responder -- this drug will fight your disease."
We'll see...
Wednesday, January 22, 2014
ANYONE FOR BOILED FROG?
There's a story, very prevalent in Business Administration lore, that if one drops a frog into a pot of boiling water, the frog will quickly kick its way out of the hot water. However, if one places a frog into a pot with room-temperature water, the frog will comfortably float around, not attempting to escape, even as one gradually heats the water until it boils and ultimately, one has a boiled frog.
The concept being illustrated here relates to change management. Those who cling to the notion of incremental change use the boiled frog as an example of successful change management and are convinced that disruptive change would cause chaos and everyone would be dodging mad-as-hell frogs jumping all over the place.
This story has been around so long there's a good chance it's just an urban myth. I mean, who would want to boil a whole frog in the first place, and what business owner would be so successful if they kept comparing their employees to frogs? Anyway, I thought of this concept yesterday when I realized I had to do something about my left lower leg swelling up.
By the end of each day the past week or so, my left lower calf and ankle were much bigger than my right. There's no doubt it is because of the tumor in my upper calf muscle -- either it is interrupting the normal lymphatic drainage pattern or it is getting inflamed from my treatment and causing local swelling which then, by gravity, settles into my lower leg and ankle. Now this is a fairly simple problem to solve. I could reverse gravity and walk around on my hands all day (not very practical and not within my capabilities anyway), I could keep my leg elevated (within my capability, but, again, not very practical if I'm trying to maintain some semblance of normal activity) or I could use some external compression device such as an elastic bandage or elastic stocking to keep the fluid from accumulating in my leg. I found a small elastic bandage in the cupboard and -- problem solved.
However, I felt the water temperature go up a degree or two.
I have had to accommodate to a number of other little things -- not drinking any wine or other alcohol because my liver enzymes have gone up, having to be very selective in what I can eat without causing pain in my jaw from a tumor which has invaded the chewing muscle, having to lie down and rest several times a day to minimize pain and restore some level of energy, not doing a full day of anything away from the house because it is just too taxing on my body, not being able to run or walk like I used to, having to limit my exercising to the point I hardly even break a sweat. All little things that, by themselves, are not that big of a deal, but each raises the temperature of the water a little. Pretty soon, I may be a boiled frog.
By the way, these thoughts came to me as I was sitting in my hot tub last night, massaging my leg...
The concept being illustrated here relates to change management. Those who cling to the notion of incremental change use the boiled frog as an example of successful change management and are convinced that disruptive change would cause chaos and everyone would be dodging mad-as-hell frogs jumping all over the place.
This story has been around so long there's a good chance it's just an urban myth. I mean, who would want to boil a whole frog in the first place, and what business owner would be so successful if they kept comparing their employees to frogs? Anyway, I thought of this concept yesterday when I realized I had to do something about my left lower leg swelling up.
By the end of each day the past week or so, my left lower calf and ankle were much bigger than my right. There's no doubt it is because of the tumor in my upper calf muscle -- either it is interrupting the normal lymphatic drainage pattern or it is getting inflamed from my treatment and causing local swelling which then, by gravity, settles into my lower leg and ankle. Now this is a fairly simple problem to solve. I could reverse gravity and walk around on my hands all day (not very practical and not within my capabilities anyway), I could keep my leg elevated (within my capability, but, again, not very practical if I'm trying to maintain some semblance of normal activity) or I could use some external compression device such as an elastic bandage or elastic stocking to keep the fluid from accumulating in my leg. I found a small elastic bandage in the cupboard and -- problem solved.
However, I felt the water temperature go up a degree or two.
I have had to accommodate to a number of other little things -- not drinking any wine or other alcohol because my liver enzymes have gone up, having to be very selective in what I can eat without causing pain in my jaw from a tumor which has invaded the chewing muscle, having to lie down and rest several times a day to minimize pain and restore some level of energy, not doing a full day of anything away from the house because it is just too taxing on my body, not being able to run or walk like I used to, having to limit my exercising to the point I hardly even break a sweat. All little things that, by themselves, are not that big of a deal, but each raises the temperature of the water a little. Pretty soon, I may be a boiled frog.
By the way, these thoughts came to me as I was sitting in my hot tub last night, massaging my leg...
Monday, January 20, 2014
UPS AND DOWNS
Well, it's been a while since I have posted, and it feels like I've been on an emotional, and physical, roller-coaster just about that whole time. I've been surprised by the degree of highs and lows I have experienced. A lot, of course, is not knowing what to expect from the investigational drug trial I am involved with, but I have also been surprised at the progression of symptoms I have been feeling. Even though the actual volume of cancer cells is relatively small, the negative symptoms they have been causing has eliminated my ability to run and markedly limited even my walking.
I have been taking over-the-counter analgesics for the past week or so and have required occasional prescription (narcotic) analgesics for some of the pain which is not controlled through meditation/relaxation techniques. I am almost never without pain, and that is very wearing, both physically and psychologically.
I've been "experimenting" with my activity to see of there is any correlation between it and the pain, but there seems to be so many variables that I cannot come up with any direct cause and effect relationships. So, I do what I can, when I can, trying to walk, swim or work out as much as possible, even though it may not be every day.
I start "puttering" around the house in the mornings, now that our renovation is essentially finished, doing all those little things like assembling Ikea furniture, hanging pictures, moving around furniture, thinking I'll exercise later in the day, but all of a sudden it is later in the day and I'm wiped out. So, from now on I will prioritize my exercise to the mornings and, if I feel up to it, do the "puttering" in the afternoons.
As my symptoms worsen, especially the pain, I'd like to think it is an effect of the investigational drug I am on - that the war inside my body has started and I'm feeling the effects of intense battles between my immune system and the cancer. Keeping that in mind helps me tolerate the pain.
I have been taking over-the-counter analgesics for the past week or so and have required occasional prescription (narcotic) analgesics for some of the pain which is not controlled through meditation/relaxation techniques. I am almost never without pain, and that is very wearing, both physically and psychologically.
I've been "experimenting" with my activity to see of there is any correlation between it and the pain, but there seems to be so many variables that I cannot come up with any direct cause and effect relationships. So, I do what I can, when I can, trying to walk, swim or work out as much as possible, even though it may not be every day.
I start "puttering" around the house in the mornings, now that our renovation is essentially finished, doing all those little things like assembling Ikea furniture, hanging pictures, moving around furniture, thinking I'll exercise later in the day, but all of a sudden it is later in the day and I'm wiped out. So, from now on I will prioritize my exercise to the mornings and, if I feel up to it, do the "puttering" in the afternoons.
As my symptoms worsen, especially the pain, I'd like to think it is an effect of the investigational drug I am on - that the war inside my body has started and I'm feeling the effects of intense battles between my immune system and the cancer. Keeping that in mind helps me tolerate the pain.
Thursday, January 2, 2014
EARTH, WIND AND FIRE
One of my Christmas presents was the book "Life of Pi." I had seen the movie when it was out, but the book adds another dimension to the philosophical meaning of the story. A young man struggling with the existential issues of life and loss -- permanence and impermanence. The story has helped frame my attempts at understanding impermanence, and added much to my personal "unorganized" religion.
To contrast using the Earth to model "permanence," it struck me as reasonable to model "impermanence" using the wind. As I walked I was able to sense, and observe, the subtle changes of the wind; the tree branches moving, the forming and reforming of the wispy clouds overhead, the hawks soaring in the invisible stream of air. This was all constantly changing as the wind came and went, powered by imperceptible atmospheric changes.
I thought about the many times while bicycle touring that the day was spent pedaling into a strong wind. When I first started riding longer distances I found a headwind discouraging but, over the years, I accepted the wind as just being part of the environment I was riding in. So what if I had to gear down a bit and I lost a few miles per hour, I was still out riding my bike. I also become more aware of the days I had a tailwind - something I hadn't always appreciated before.
I thought about the times I waited in a harbor for the wind to dissipate or to change direction so that I could continue on my journey. Sometimes it would be constant for days causing the water to be rough and impassable, then when it died down the sea would be like glass and I'd marvel at the changes in the water's surface just because the wind wasn't there.
But did these thoughts represent "impermanence" or just "change?" What are the subtleties of change as transformation versus impermanence as not lasting? Impermanence certainly gives more of a sense of something going away rather than remaining and transforming.
Maybe another model to represent impermanence would be the few shriveled, rust-orange leaves clinging to the almost-bare deciduous branches at the end of the year. They will be gone by Spring, replaced by the new season's vibrant green leaves. Do the old leaves vanish? Do they change? Do they transform? Is that pile of burning leaves really the end? The scientist in me recognizes that the basic building blocks remain. That the molecules which had been structured into a living leaf don't disappear, but gradually become available for use in new structures - perhaps nourishing the soil to produce another life form, perhaps after multiple transforming cycles to become part of another leaf.
This concept, impermanence, isn't quite as easy to grasp as permanence. Maybe what is making it so difficult is the discomfort of knowing we are impermanent. As our earthly life ends there's no doubt we transform, but do we go away?
To contrast using the Earth to model "permanence," it struck me as reasonable to model "impermanence" using the wind. As I walked I was able to sense, and observe, the subtle changes of the wind; the tree branches moving, the forming and reforming of the wispy clouds overhead, the hawks soaring in the invisible stream of air. This was all constantly changing as the wind came and went, powered by imperceptible atmospheric changes.
I thought about the many times while bicycle touring that the day was spent pedaling into a strong wind. When I first started riding longer distances I found a headwind discouraging but, over the years, I accepted the wind as just being part of the environment I was riding in. So what if I had to gear down a bit and I lost a few miles per hour, I was still out riding my bike. I also become more aware of the days I had a tailwind - something I hadn't always appreciated before.
I thought about the times I waited in a harbor for the wind to dissipate or to change direction so that I could continue on my journey. Sometimes it would be constant for days causing the water to be rough and impassable, then when it died down the sea would be like glass and I'd marvel at the changes in the water's surface just because the wind wasn't there.
But did these thoughts represent "impermanence" or just "change?" What are the subtleties of change as transformation versus impermanence as not lasting? Impermanence certainly gives more of a sense of something going away rather than remaining and transforming.
Maybe another model to represent impermanence would be the few shriveled, rust-orange leaves clinging to the almost-bare deciduous branches at the end of the year. They will be gone by Spring, replaced by the new season's vibrant green leaves. Do the old leaves vanish? Do they change? Do they transform? Is that pile of burning leaves really the end? The scientist in me recognizes that the basic building blocks remain. That the molecules which had been structured into a living leaf don't disappear, but gradually become available for use in new structures - perhaps nourishing the soil to produce another life form, perhaps after multiple transforming cycles to become part of another leaf.
This concept, impermanence, isn't quite as easy to grasp as permanence. Maybe what is making it so difficult is the discomfort of knowing we are impermanent. As our earthly life ends there's no doubt we transform, but do we go away?
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