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.
Monday, January 27, 2014
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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