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!
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