Perhaps because this is Breast Cancer Awareness Month, there have been many stories on TV, in magazines, and online about cancer, of fear, of surviving …these all hit home; and they also make me aware not only of Breast Cancer, or Cancer in general, but fear…and how much of it we all have.
We have fear of our dying, fear of the ones we love dying, fear of growing old, fear of ageism, fear of separation, fear of commitment, fear of inadequacy, fear of never reaching our potential, fear of poverty, fear of losing what we have, fear of never having anything, fear of small spaces, fear of too much space, fear of heights, fear of not being seen for all we may be, fear of being seen for all that we may not actually be, fear of being alone, fear of crowds, fear of terrorism, fear of being attacked while at home, fear of being attacked when we are out of our home, fear of global warming, fear of overpopulation, fear of winter, fear of water, fear of bugs, fear of dogs, fear of germs, fear of a lack of control…so many fears.
Then there are the survivor stories; people who have been through some of the worst circumstances that a person can imagine. But they have gone through it…mostly because they had to, because lets face it, what is the alternative? You fight to live another day. There is a common thread I’ve noticed to many of these stories; these survivors often say that after having been through what may be the worst times of their lives, they are afraid of nothing anymore. They have looked fear in the face, and conquered it, and for that they are grateful and forever unchanged. I believe this to be mostly true. For me personally, there are many challenges that no longer rock me, but I don’t think all these survivors speak completely honestly. There is one huge fear that overwhelms me…that may always overwhelm me, and I’m sure that I’m not the only one; the fear of not being able to always choose the fears I wish to overcome. If I choose to jump out of a plane, or to speak in front of 10,000 people; (when at one time I would be too afraid to do either of these things), this is my choice. If I get sick again, I don’t choose this; I believe the biggest fear that I have is that I cannot choose all of what I don’t want to happen.
So ultimately, what’s behind any good fear? The lack of control…this is the hardest one to beat.
Monday, October 20, 2008
Sunday, October 19, 2008
Two months after radiation-I’m so tired of being me
When you’re sick in bed, what might you be doing? What might I be doing? Watching TV. What’s on? Not much. What’s worth watching? Not much. It’s too depressing to watch Jerry Springer, Steve Wilkos, or Maury Povich. There’s Oprah, Ellen, Tyra, and for a short while…Wendy, this is occasionally good...but mostly there are movies (some good, some not so good, many bad), and the NEWS. The NEWS now is especially tormenting. You want to watch, you need to watch, you shouldn’t watch, you have to watch. What difference does it make if you watch? So is it NEWS or a bad movie? Oh, all the decisions for a sick person.
The world seems to be imploding…and so am I. A week after I consulted with Dr. ENT and received his clean bill of health, I felt really awful. So off I went to Dr. Ear. Dr. Ear sits at the bottom of the Ear, Nose and Throat pyramid. While my Dr. ENT deals with life saving surgeries, Dr. Ear deals with abscesses and wax…gross. So he does his Dr. Ear thing and proclaims that I have an ear infection, and…a sinus infection…something Dr. ENT emphatically denied I had…in fact he said that any irritation I had was most likely due to radiation, and that I would have it forever. When I tell Dr. Ear what Dr. ENT said, he says this “well, I don’t know what to tell you, this is what we do here, and you have a huge infection”. I like how he says that that is what he does…proudly he pronounces that this dripping, waxy, oozing territory is his…Dr. ENT would not get close to this stuff…too beneath him. So beneath him I guess, that he was even unable to see it.
This was a happy day for me; finally I had someone who concurred with what I was feeling about myself…that I was infected and needed modern day medicine…something more than hope and saline spray. I went to the pharmacy, filled my prescription, took it, and started down a sad and sick path that I had not visited since last October right after I had surgery. Not even during radiation did I feel this bad. I began to hear a whooshing noise in my hearless ear, I ached all over, I was dizzy, my ear pounded with pain, I was nauseous, sick, and did I mention extremely sad?
I called Dr. Ear and he told me to stop taking the medicine, that I was probably having an allergic reaction. He prescribed medicine #2…I started to take that…I felt worse…as though that was even possible. As elated as I was initially with Dr. Ear, my enthusiasm had waned completely; it made me start to question his bold statement “this is what I do”. For me, he wasn’t doing such a good job. Besides the fact that I was now feeling sicker, I was confused about what was wrong with me. Was this an allergic reaction, was it radiation, was it tumor? And the whooshing was just driving me nuts. I have such a stew of doctors at the moment…neurologist, radiation oncologist, PCP, neurosurgeon, ENT, head and neck surgeon…I just wasn’t sure to whom to tell my story. I called my PCP…always a calm guy in the storm. He listened and decided to prescribe a regular broad base antibiotic…nothing to 21st century, and said to give it a few days and see how I feel. He also added that if the whooshing continued that I should call my neurologist.
I took the broad base antibiotic, the whooshing started to recede, I do feel better, still have an earache…but I’m relieved to have dropped some of the other symptoms. No more whooshing.
What can I say; it was a setback I could have done without. As I approach the one-year mark from my surgery last year, I feel so tired of this, so tired of being this me.
The world seems to be imploding…and so am I. A week after I consulted with Dr. ENT and received his clean bill of health, I felt really awful. So off I went to Dr. Ear. Dr. Ear sits at the bottom of the Ear, Nose and Throat pyramid. While my Dr. ENT deals with life saving surgeries, Dr. Ear deals with abscesses and wax…gross. So he does his Dr. Ear thing and proclaims that I have an ear infection, and…a sinus infection…something Dr. ENT emphatically denied I had…in fact he said that any irritation I had was most likely due to radiation, and that I would have it forever. When I tell Dr. Ear what Dr. ENT said, he says this “well, I don’t know what to tell you, this is what we do here, and you have a huge infection”. I like how he says that that is what he does…proudly he pronounces that this dripping, waxy, oozing territory is his…Dr. ENT would not get close to this stuff…too beneath him. So beneath him I guess, that he was even unable to see it.
This was a happy day for me; finally I had someone who concurred with what I was feeling about myself…that I was infected and needed modern day medicine…something more than hope and saline spray. I went to the pharmacy, filled my prescription, took it, and started down a sad and sick path that I had not visited since last October right after I had surgery. Not even during radiation did I feel this bad. I began to hear a whooshing noise in my hearless ear, I ached all over, I was dizzy, my ear pounded with pain, I was nauseous, sick, and did I mention extremely sad?
I called Dr. Ear and he told me to stop taking the medicine, that I was probably having an allergic reaction. He prescribed medicine #2…I started to take that…I felt worse…as though that was even possible. As elated as I was initially with Dr. Ear, my enthusiasm had waned completely; it made me start to question his bold statement “this is what I do”. For me, he wasn’t doing such a good job. Besides the fact that I was now feeling sicker, I was confused about what was wrong with me. Was this an allergic reaction, was it radiation, was it tumor? And the whooshing was just driving me nuts. I have such a stew of doctors at the moment…neurologist, radiation oncologist, PCP, neurosurgeon, ENT, head and neck surgeon…I just wasn’t sure to whom to tell my story. I called my PCP…always a calm guy in the storm. He listened and decided to prescribe a regular broad base antibiotic…nothing to 21st century, and said to give it a few days and see how I feel. He also added that if the whooshing continued that I should call my neurologist.
I took the broad base antibiotic, the whooshing started to recede, I do feel better, still have an earache…but I’m relieved to have dropped some of the other symptoms. No more whooshing.
What can I say; it was a setback I could have done without. As I approach the one-year mark from my surgery last year, I feel so tired of this, so tired of being this me.
Monday, September 29, 2008
Esmie Woodhouse
Some things, no matter how much you may try…just don’t make sense.
My yoga teacher suffered an aneurysm last Sunday, a day after our Saturday morning class. The word unbelievable doesn’t describe what this is…I can’t find a word.
The fact that this happened turns sense on its ear. Esmie is inspirational. She is 65 years old and looks and seems like she is twenty years younger. She sees the world as a connective whole; she believes that we all have an influence on each other and that we are at our best when we are centered, calm and positive. She believes in a higher power, and that that power will take care of you; she has been one of my biggest supporters during this very trying year, and she is my friend.
Her class has become more than just a yoga class for me over the eight years that I’ve been going; this year especially, it has become a barometer of sorts. I would try and get to that class if I had even just the smallest amount of energy; if I could make it to the class I would feel better afterward for having been there, and a sense of accomplishment in having gone.
Out of control is what this feels like, there isn’t very much I can do right now, so I will do what I know she had done for me during this last year; I will think of her every day. Through thought I will send her healing energy, and I will hope that not only her physical strength, but that her spiritual belief will restore her to a happy, healthy life.
Saturdays will be different for a while.
My yoga teacher suffered an aneurysm last Sunday, a day after our Saturday morning class. The word unbelievable doesn’t describe what this is…I can’t find a word.
The fact that this happened turns sense on its ear. Esmie is inspirational. She is 65 years old and looks and seems like she is twenty years younger. She sees the world as a connective whole; she believes that we all have an influence on each other and that we are at our best when we are centered, calm and positive. She believes in a higher power, and that that power will take care of you; she has been one of my biggest supporters during this very trying year, and she is my friend.
Her class has become more than just a yoga class for me over the eight years that I’ve been going; this year especially, it has become a barometer of sorts. I would try and get to that class if I had even just the smallest amount of energy; if I could make it to the class I would feel better afterward for having been there, and a sense of accomplishment in having gone.
Out of control is what this feels like, there isn’t very much I can do right now, so I will do what I know she had done for me during this last year; I will think of her every day. Through thought I will send her healing energy, and I will hope that not only her physical strength, but that her spiritual belief will restore her to a happy, healthy life.
Saturdays will be different for a while.
Sunday, September 28, 2008
Last week was quite a mixed bag
My world:
I remember something a friend of mine said to me a few years ago. We were in the television production business together, although not exactly together. He was in it and I was in it, but we weren’t working together at the time he made this comment; this comment wasn’t, by the way, something he crafted on his own, (I had heard it before), but it was strange because of when he chose to say it. The commercial business at the time was weathering a “kind of a storm”. It was changing; there was a lot less commercial television work, but many more people wanting to do it. As a result, there was a lot of underbidding on the available projects. If you wanted to work, you often had to underbid. If you stood your ground and refused to low ball jobs, you’d eventually be out of business, and many did just that.
So it was during this time I asked my friend that age-old question “how’s business?” He replied: “If it’s good for you, then its good for you”. I knew what he was saying…he was glad that he was working. He had a small company and was able to underbid jobs and still make a profit. He was working; it was good for him. I couldn’t help thinking though of all the other people I knew who weren’t working…not so good for them. Not so good for those whom either couldn’t afford to bid a job for less, or refused to underbid for what they believed to be ethical reasons, and in their mind what would bring about the eventual diminishing or demise of the business as we knew it. That was in 2001, and the business did change, it will never be what it used to be. If the industry had taken a stand together to refuse to underbid commercial productions, recognizing that while a few would be able to do this and still make money, that generally most companies would not be able to do this, bringing about less creative options in the end, and a business that to this day is extremely hard to make a profit in. Today everyone in the TV commercial production business lives the results of those decisions in 2001.
Greed is what changed things. For a short period in time, a sector of the business was grabbing the cash. In doing so, they helped dilute the overall strength of the industry, and in the end everyone in the industry paid the price.
There is always a fork in the road, the fork for the television production industry was to decide to band together and support each other, and not to bid jobs beyond a certain low, or allow price to become one of the most important criteria on which to judge which was the best company/director to produce a job. If the industry had come together instead of fracturing, the outcome might have been quite a different one.
The Lesson: One, when it seems like it’s so good for you but so not good for others, it may not be that good. Two, beware of things that seem too good to be true, they probably are just that…too good to be true.
Sound like something familiar?
This is such a confusing time. This election, this financial crisis, this war, all of this…is not good for my health.
I’m thinking of the dawning of a new day. Aren’t you?
My Health:
I had an appointment with my Head and Neck surgeon (Dr. ENT); he was part of the surgical team that operated on me last October. It’s been almost a year since I had surgery and I’m still having a lot of…lets just call them issues with my sinuses. My sinuses were the road, on which my surgeons traveled to get to my brain…a road is not traveled without leaving any sign of passage. In my mind I thought the conversation would be something of a casual chat about all that I had been through since we had last seen each other, he would look into my nose and ears…notice that I had a raging sinus infection, prescribe me an antibiotic. I’d be off on my way, and in a week or so, all my sinus “issues” would be gone…forever.
It went more like this…he asked me how I was doing. He didn’t seem to know that I had had radiation. I’ve been keeping in touch with my neurosurgeon (Dr. IAmKing), but I would have thought that they somewhere along the line in this past year had discussed my case. I let Dr. ENT know I had radiation…he said “oh yes, I do think I remember hearing that”. Hmmmm…he seems to remember. What playing field did I just step on to? What game are we playing? He said that he was glad to hear that I was doing well. He looked into, or should I say up my nose and said that I didn’t have an infection. That the symptoms I was suffering, were probably due to the radiation. I said that these were problems I had before radiation. He seemed to ignore that, and went on to elaborate that radiation near where I needed to have it changes the function of the sinuses…forever. “FOREVER?” I say. “Yes, forever”. “What about antibiotics?” I continue to ask. “No, you don’t want to start taking antibiotics, it won’t help, you will gain a tolerance to the antibiotics, and if taken too regularly, could change an infection into a fungal infection…which you could die from. But you should keep on using the saline stray, and use it about 15 times a day”. I asked half joking “is there enough time in the day for that? You mean to tell me in 2008, the best there is to offer is salt water?” He chuckles “yep, best thing”.
He checks my ears, looks down my throat, tells me I look good, then tells me to stay in touch and keep him posted on my progress. He tells me that they (doctors I guess) hear about how wonderful Proton Therapy is…that it is being touted as good for everything from cancer to radiating your food. Is this a Proton joke or is it a Proton snub? He goes on to say, they hear about the success cases, but not about the failures. Oh, I get it now. This was the game of Radiation vs. Surgery, and he is routing for the home team…but of course he wishes me the best.
This was so not the way I hoped things would go, but I wasn’t all that surprised. If my surgeons had seen the value of Proton Therapy they would have suggested it. What about the patient’s role in this game? I felt a bit like the ball. Depressing.
Time to go to the drugstore for a year’s supply of Saline Spray.
On the brighter side:
I ran into a grocery store last week in pursuit of a bottle of canola oil, I felt a need to make a pumpkin bread…yes, a need. Fall brings on a craving for a pumpkin bread. This was ambitious of me, given my energy is still not all there…but a craving is a craving. I grabbed my oil and went to stand on line. There were three cashiers, each had at least 4 fully packed carts already standing alongside their people on line. I picked a line. Let the positive thinking begin. I stood behind a woman, who looked at me and my one item. I could see her thought process. She thought, I’d ask you if you want to go in front of me, but that won’t really help you out, since you will still need to wait behind two other wildly packed shopping carts. She said to me instead “can you believe they only have three cashiers?” I said, “It’s unbelievable”. I also knew that I was not leaving without my oil. If I had to wait it out, I would. The thought of this though does start to daunt me. I begin to think what I can lean on, since I don’t have a cart. “Should I try and grab a stray cart to help prop me up as I wait out this line?” In my scanning, I catch the eye of a man who works at the store. “Could this be a possible cashier?” We make eye contact; I nonchalantly wave my one bottle of oil, while also trying to convey my lack of stamina. It worked! The man motioned me over to the empty register, to pay for my one item. He also invited the lady in front of me to come over. The woman behind me (who had been the woman in front of me) said, “I’m sticking by you, you bring the luck”. I thought to myself “you have no idea”. This day had the earmarking of a great day.
Then on Friday of last week I decided that I would sell my tandem kayak (a two person kayak). I had bought it for Rachel and I to kayak in together, but she is more of a solo gal now, and so am I. I would buy a new or new/used single as well as a new roof rack with the proceeds from the sale of the tandem. I decided to list it on Craigslist. Things went smashingly. I got several inquiries right a way. On Sunday someone came with the cash, paid me what I wanted for the boat, and off it went with it’s new happy owner. All things should be that easy. I love Craigslist! Now I’m thinking of all the other things that I can sell.
Last week was quite a mixed bag.
I remember something a friend of mine said to me a few years ago. We were in the television production business together, although not exactly together. He was in it and I was in it, but we weren’t working together at the time he made this comment; this comment wasn’t, by the way, something he crafted on his own, (I had heard it before), but it was strange because of when he chose to say it. The commercial business at the time was weathering a “kind of a storm”. It was changing; there was a lot less commercial television work, but many more people wanting to do it. As a result, there was a lot of underbidding on the available projects. If you wanted to work, you often had to underbid. If you stood your ground and refused to low ball jobs, you’d eventually be out of business, and many did just that.
So it was during this time I asked my friend that age-old question “how’s business?” He replied: “If it’s good for you, then its good for you”. I knew what he was saying…he was glad that he was working. He had a small company and was able to underbid jobs and still make a profit. He was working; it was good for him. I couldn’t help thinking though of all the other people I knew who weren’t working…not so good for them. Not so good for those whom either couldn’t afford to bid a job for less, or refused to underbid for what they believed to be ethical reasons, and in their mind what would bring about the eventual diminishing or demise of the business as we knew it. That was in 2001, and the business did change, it will never be what it used to be. If the industry had taken a stand together to refuse to underbid commercial productions, recognizing that while a few would be able to do this and still make money, that generally most companies would not be able to do this, bringing about less creative options in the end, and a business that to this day is extremely hard to make a profit in. Today everyone in the TV commercial production business lives the results of those decisions in 2001.
Greed is what changed things. For a short period in time, a sector of the business was grabbing the cash. In doing so, they helped dilute the overall strength of the industry, and in the end everyone in the industry paid the price.
There is always a fork in the road, the fork for the television production industry was to decide to band together and support each other, and not to bid jobs beyond a certain low, or allow price to become one of the most important criteria on which to judge which was the best company/director to produce a job. If the industry had come together instead of fracturing, the outcome might have been quite a different one.
The Lesson: One, when it seems like it’s so good for you but so not good for others, it may not be that good. Two, beware of things that seem too good to be true, they probably are just that…too good to be true.
Sound like something familiar?
This is such a confusing time. This election, this financial crisis, this war, all of this…is not good for my health.
I’m thinking of the dawning of a new day. Aren’t you?
My Health:
I had an appointment with my Head and Neck surgeon (Dr. ENT); he was part of the surgical team that operated on me last October. It’s been almost a year since I had surgery and I’m still having a lot of…lets just call them issues with my sinuses. My sinuses were the road, on which my surgeons traveled to get to my brain…a road is not traveled without leaving any sign of passage. In my mind I thought the conversation would be something of a casual chat about all that I had been through since we had last seen each other, he would look into my nose and ears…notice that I had a raging sinus infection, prescribe me an antibiotic. I’d be off on my way, and in a week or so, all my sinus “issues” would be gone…forever.
It went more like this…he asked me how I was doing. He didn’t seem to know that I had had radiation. I’ve been keeping in touch with my neurosurgeon (Dr. IAmKing), but I would have thought that they somewhere along the line in this past year had discussed my case. I let Dr. ENT know I had radiation…he said “oh yes, I do think I remember hearing that”. Hmmmm…he seems to remember. What playing field did I just step on to? What game are we playing? He said that he was glad to hear that I was doing well. He looked into, or should I say up my nose and said that I didn’t have an infection. That the symptoms I was suffering, were probably due to the radiation. I said that these were problems I had before radiation. He seemed to ignore that, and went on to elaborate that radiation near where I needed to have it changes the function of the sinuses…forever. “FOREVER?” I say. “Yes, forever”. “What about antibiotics?” I continue to ask. “No, you don’t want to start taking antibiotics, it won’t help, you will gain a tolerance to the antibiotics, and if taken too regularly, could change an infection into a fungal infection…which you could die from. But you should keep on using the saline stray, and use it about 15 times a day”. I asked half joking “is there enough time in the day for that? You mean to tell me in 2008, the best there is to offer is salt water?” He chuckles “yep, best thing”.
He checks my ears, looks down my throat, tells me I look good, then tells me to stay in touch and keep him posted on my progress. He tells me that they (doctors I guess) hear about how wonderful Proton Therapy is…that it is being touted as good for everything from cancer to radiating your food. Is this a Proton joke or is it a Proton snub? He goes on to say, they hear about the success cases, but not about the failures. Oh, I get it now. This was the game of Radiation vs. Surgery, and he is routing for the home team…but of course he wishes me the best.
This was so not the way I hoped things would go, but I wasn’t all that surprised. If my surgeons had seen the value of Proton Therapy they would have suggested it. What about the patient’s role in this game? I felt a bit like the ball. Depressing.
Time to go to the drugstore for a year’s supply of Saline Spray.
On the brighter side:
I ran into a grocery store last week in pursuit of a bottle of canola oil, I felt a need to make a pumpkin bread…yes, a need. Fall brings on a craving for a pumpkin bread. This was ambitious of me, given my energy is still not all there…but a craving is a craving. I grabbed my oil and went to stand on line. There were three cashiers, each had at least 4 fully packed carts already standing alongside their people on line. I picked a line. Let the positive thinking begin. I stood behind a woman, who looked at me and my one item. I could see her thought process. She thought, I’d ask you if you want to go in front of me, but that won’t really help you out, since you will still need to wait behind two other wildly packed shopping carts. She said to me instead “can you believe they only have three cashiers?” I said, “It’s unbelievable”. I also knew that I was not leaving without my oil. If I had to wait it out, I would. The thought of this though does start to daunt me. I begin to think what I can lean on, since I don’t have a cart. “Should I try and grab a stray cart to help prop me up as I wait out this line?” In my scanning, I catch the eye of a man who works at the store. “Could this be a possible cashier?” We make eye contact; I nonchalantly wave my one bottle of oil, while also trying to convey my lack of stamina. It worked! The man motioned me over to the empty register, to pay for my one item. He also invited the lady in front of me to come over. The woman behind me (who had been the woman in front of me) said, “I’m sticking by you, you bring the luck”. I thought to myself “you have no idea”. This day had the earmarking of a great day.
Then on Friday of last week I decided that I would sell my tandem kayak (a two person kayak). I had bought it for Rachel and I to kayak in together, but she is more of a solo gal now, and so am I. I would buy a new or new/used single as well as a new roof rack with the proceeds from the sale of the tandem. I decided to list it on Craigslist. Things went smashingly. I got several inquiries right a way. On Sunday someone came with the cash, paid me what I wanted for the boat, and off it went with it’s new happy owner. All things should be that easy. I love Craigslist! Now I’m thinking of all the other things that I can sell.
Last week was quite a mixed bag.
Tuesday, September 16, 2008
A month after radiation...I wait
In the poem “If” by Rudyard Kipling, there is this line…”If you wait and not be tired by waiting… yours is the Earth and everything that's in it”.
And so I wait.
It’s been a month since my last radiation treatment. I feel better than I felt a month ago, but I have a ways to go until I feel the level of zippy to which I am accustomed…before all this started. In the last few weeks I’ve kayaked for a short while on a beautiful day with a group of friends, I’ve picked peaches for a bit with Jon and Rachel, I‘ve partaken of various ice creams establishments across Long Island (always good), I’ve been to the beach, and I’ve had several friends visit from out of town. These events have helped to assuage the otherwise boredom and loneliness I feel. Most everyone is doing, and I’m in a sort of limbo place.
Before I had surgery, I was doing, I had a goal…it was to finally find out what kind of tumor I had. After surgery, I was researching my post surgery options, and then organizing my treatment schedule. Every day felt purposeful. My radiation treatments while debilitating were very goal oriented. I was not waiting, I was doing. I felt a sense of control.
These days I don’t really do…I wait…unless waiting is a form of doing…it is according to Rudyard Kipling. I’m supposed to relax, rebuild, regroup, mend, get stronger…this is so passive…not really something that comes naturally to me. While I try to get comfortable with this new form of doing, I feel frustrated that my tongue, which felt better before radiation, feels worse. What can I do? Not much, I’m supposed to relax, rebuild, and wait. My sinuses hurt, my head aches, my swallowing is challenged, by head is bald in places. What can I do? Not much, just wait. So I think while I’m in my waiting state…what can I do? And this thought comes to me…I may not be able to physically control what happens to me, like how long it takes to heal, what heals when…but I can control the thoughts in my head…and this realization makes me feel better.
I tell myself that my tongue, which to my ear makes me sound like I’ve had too much to drink at lunch, is temporary. I tell myself that my sinus pain and headaches are merely the indication of healing and nothing else. I tell myself that all that has been, will be worthwhile. I tell myself that I’ll heal quickly, totally, and finally.
And then I wait.
And so I wait.
It’s been a month since my last radiation treatment. I feel better than I felt a month ago, but I have a ways to go until I feel the level of zippy to which I am accustomed…before all this started. In the last few weeks I’ve kayaked for a short while on a beautiful day with a group of friends, I’ve picked peaches for a bit with Jon and Rachel, I‘ve partaken of various ice creams establishments across Long Island (always good), I’ve been to the beach, and I’ve had several friends visit from out of town. These events have helped to assuage the otherwise boredom and loneliness I feel. Most everyone is doing, and I’m in a sort of limbo place.
Before I had surgery, I was doing, I had a goal…it was to finally find out what kind of tumor I had. After surgery, I was researching my post surgery options, and then organizing my treatment schedule. Every day felt purposeful. My radiation treatments while debilitating were very goal oriented. I was not waiting, I was doing. I felt a sense of control.
These days I don’t really do…I wait…unless waiting is a form of doing…it is according to Rudyard Kipling. I’m supposed to relax, rebuild, regroup, mend, get stronger…this is so passive…not really something that comes naturally to me. While I try to get comfortable with this new form of doing, I feel frustrated that my tongue, which felt better before radiation, feels worse. What can I do? Not much, I’m supposed to relax, rebuild, and wait. My sinuses hurt, my head aches, my swallowing is challenged, by head is bald in places. What can I do? Not much, just wait. So I think while I’m in my waiting state…what can I do? And this thought comes to me…I may not be able to physically control what happens to me, like how long it takes to heal, what heals when…but I can control the thoughts in my head…and this realization makes me feel better.
I tell myself that my tongue, which to my ear makes me sound like I’ve had too much to drink at lunch, is temporary. I tell myself that my sinus pain and headaches are merely the indication of healing and nothing else. I tell myself that all that has been, will be worthwhile. I tell myself that I’ll heal quickly, totally, and finally.
And then I wait.
Wednesday, September 10, 2008
Just Three Little Words...I Don't Know
I’ve mentioned my neurosurgeon before, but hadn’t given him a name for my blog…he’s not to be confused with Dr. Do Nothing who was the neuro-opthamologist I saw for fourteen years that didn’t notice my tumor was getting bigger every year. He’s also not to be mistaken for my first neurosurgeon, Dr. OverMyHead; he did surgery, but didn’t really get to the tumor, so instead he manufactured a diagnosis. I didn’t know this though until I had my second surgery last Fall with…I’ll call him Dr. IAmKing.
Dr. IAmKing, like most neurosurgeons I’ve met, came with an attitude. He’s the Chairman of Neurosurgery at a highly prestigious hospital in New York. Neurosurgeons carry themselves with a great deal of ego and stature. They wear an air of “I Know Everything”. When I first met Dr. IAmKing, he looked at my MRI’s from years past and proclaimed my tumor to be a certain kind of unusual aqueous tumor. “This is definitely liquid” he said, “We can put a drain in there, and drain it out”. I know now in retrospect, that my tumor was not liquid; it was hard like a rock. Oops! Did he admit to not getting this right? Nope. Following my consult with Dr. IAmKing, I consulted with two other surgeons who thought the tumor was rock hard, definitely not liquid. They were right, he was wrong. These two other doctors showed as much confidence and bravado about their diagnosis as Dr. IAmKing did about his. How to choose, how to choose? The difference was that Dr. IAmKing had a much less invasive surgery…I decided to go with
Dr. IAmKing.
After surgery, Dr. IAmKing, said that the tumor was rock hard, and that he could not get it all, I would definitely need more surgeries. Did he admit he was wrong? Nope.
Six weeks later when I came to see him for follow-up, he said that he could see from the MRI I had just had, that the tumor had grown quite a bit and that we needed to act quickly. He also went on to say that I would need to have a test to see if one of my carotid arteries (we have two-the one in our neck branches off when it gets into our brain) could be tied off. He hoped that the results of this test would be positive (meaning I could do with just one carotid artery), this would give him better access to the tumor and more room to move around in…he would need as much room to move around in as possible. This procedure is a big deal, once the artery is tied off, you’re watched as an out patient for six weeks to see if you have a stroke or not, it’s not something that should be rushed in to, and yet I was feeling rushed. When I went for second opinions, not a single other doctor believed there to be any demonstrative change in the size of my tumor from my pre-surgery MRI to my post-surgery MRI, nor recommended the artery be tied off. So what was Dr. IAmKing seeing? Dare a say the house payment he stood to make by performing another surgery so quickly? Yikes! Let’s face it doctoring is a business too. I would question him about this later, and he stood his ground, saying that there was definitely growth. His hospital’s own radiologist did not see any growth. Would he admit that he was wrong? Nope.
I needed time to think and research other possibilities.
And so I did. I found Proton Therapy, I asked Dr. IAmKing if he was familiar with this type of radiation. He said that he was, but that I wouldn’t be a candidate; that it was for small, round tumors, which mine was not. I consulted with Proton Therapy Center at Mass General. They not only told me I was a candidate, but that Proton Therapy is particularly effective for large, irregular, hard to reach tumors. I let Dr. IAmKing know that I was pursuing this therapy. He said, “I do not disagree, and I support your decision, and please keep me posted on how you’re doing”. Did he say he wasn’t aware that Proton Therapy was for irregular, large tumors? Nope.
The rest of this story has already been told in earlier blogs. I went, I radiated, I’m still recovering.
I have to say that despite his seemingly deep well of misinformation, I liked him. He was always available to answer my questions (not always easy to find in a doctor of such stature). He sent me an email while I was in Boston to find out how I was doing (again, not the usual procedure from a doctor of such stature). Lastly, while his impression of my tumor before surgery was wrong, his surgery left me walking and talking pretty much the same as when I went in…this is not to be underestimated when you’re in and around what neurosurgeons call “lion’s country”, or “high-priced real estate”. I excused the fact that he did not read MRI’s very well, by saying “well, he’s a surgeon, not a radiologist”. I dismissed the fact that he wasn’t as aware of Proton Therapy as I would have liked him to be (considering he is a doctor of such stature), by saying well “you can’t know everything”.
Yesterday I sent an email to Dr. IAmKing. My case is unusual, its had a lot of twists and turns, I felt he would find my post-play findings worthwhile, and remember he had sent me a previous email inquiring as to my health. It was an outline of what I had learned after he had performed my surgery on October 30th of last year. I listed that his surgery confirmed the fact that the tumor had been misdiagnosed in 1990, that he had suggested other surgeries, that I asked him about Proton Therapy and that he felt I was not a candidate. That I had consulted with Mass General and Sloan Kettering and that they felt more surgery would be a detriment, that radiation, particularly Proton Therapy would be my best option. Lastly, I wrote that I hope that by my writing this e-mail, that other chondrosarcoma patients would benefit; Proton Therapy is a very viable treatment for this kind of tumor. He responded. Did Dr. IAmKing say he was wrong? Did he say I didn’t know? Nope. He said this:
“Thank you for your thoughtful notes and for keeping me informed of your progress. Of course I was aware of the reports of the MGH group about proton beam therapy, as well as reports of other types of image-guided XRT for chondrosarcoma. My recommendations for you naturally incorporated my interpretations of how well these therapies work, their complication rates, the alternative treatments, and your medical history.”
I am thinking if he knew that these therapies were available, he owed it to me the patient to offer them up as possibilities, and to let me make the decision as to whether they would be right for me or not. If he didn’t mention them because he made a decision in his own head on my behalf, this not telling me everything, is sort of like lying. More importantly he has seemingly remade our history by saying that he was aware of these therapies. If he were aware, he would not have said that Proton Therapy was only for small round tumors. He just didn’t know, but he couldn’t say it. His ego wouldn’t let him admit it. In the end I find his response disappointing, but sadly predictable. I thought maybe he was different. “What was I thinking?”
Dr. IAmKing, like most neurosurgeons I’ve met, came with an attitude. He’s the Chairman of Neurosurgery at a highly prestigious hospital in New York. Neurosurgeons carry themselves with a great deal of ego and stature. They wear an air of “I Know Everything”. When I first met Dr. IAmKing, he looked at my MRI’s from years past and proclaimed my tumor to be a certain kind of unusual aqueous tumor. “This is definitely liquid” he said, “We can put a drain in there, and drain it out”. I know now in retrospect, that my tumor was not liquid; it was hard like a rock. Oops! Did he admit to not getting this right? Nope. Following my consult with Dr. IAmKing, I consulted with two other surgeons who thought the tumor was rock hard, definitely not liquid. They were right, he was wrong. These two other doctors showed as much confidence and bravado about their diagnosis as Dr. IAmKing did about his. How to choose, how to choose? The difference was that Dr. IAmKing had a much less invasive surgery…I decided to go with
Dr. IAmKing.
After surgery, Dr. IAmKing, said that the tumor was rock hard, and that he could not get it all, I would definitely need more surgeries. Did he admit he was wrong? Nope.
Six weeks later when I came to see him for follow-up, he said that he could see from the MRI I had just had, that the tumor had grown quite a bit and that we needed to act quickly. He also went on to say that I would need to have a test to see if one of my carotid arteries (we have two-the one in our neck branches off when it gets into our brain) could be tied off. He hoped that the results of this test would be positive (meaning I could do with just one carotid artery), this would give him better access to the tumor and more room to move around in…he would need as much room to move around in as possible. This procedure is a big deal, once the artery is tied off, you’re watched as an out patient for six weeks to see if you have a stroke or not, it’s not something that should be rushed in to, and yet I was feeling rushed. When I went for second opinions, not a single other doctor believed there to be any demonstrative change in the size of my tumor from my pre-surgery MRI to my post-surgery MRI, nor recommended the artery be tied off. So what was Dr. IAmKing seeing? Dare a say the house payment he stood to make by performing another surgery so quickly? Yikes! Let’s face it doctoring is a business too. I would question him about this later, and he stood his ground, saying that there was definitely growth. His hospital’s own radiologist did not see any growth. Would he admit that he was wrong? Nope.
I needed time to think and research other possibilities.
And so I did. I found Proton Therapy, I asked Dr. IAmKing if he was familiar with this type of radiation. He said that he was, but that I wouldn’t be a candidate; that it was for small, round tumors, which mine was not. I consulted with Proton Therapy Center at Mass General. They not only told me I was a candidate, but that Proton Therapy is particularly effective for large, irregular, hard to reach tumors. I let Dr. IAmKing know that I was pursuing this therapy. He said, “I do not disagree, and I support your decision, and please keep me posted on how you’re doing”. Did he say he wasn’t aware that Proton Therapy was for irregular, large tumors? Nope.
The rest of this story has already been told in earlier blogs. I went, I radiated, I’m still recovering.
I have to say that despite his seemingly deep well of misinformation, I liked him. He was always available to answer my questions (not always easy to find in a doctor of such stature). He sent me an email while I was in Boston to find out how I was doing (again, not the usual procedure from a doctor of such stature). Lastly, while his impression of my tumor before surgery was wrong, his surgery left me walking and talking pretty much the same as when I went in…this is not to be underestimated when you’re in and around what neurosurgeons call “lion’s country”, or “high-priced real estate”. I excused the fact that he did not read MRI’s very well, by saying “well, he’s a surgeon, not a radiologist”. I dismissed the fact that he wasn’t as aware of Proton Therapy as I would have liked him to be (considering he is a doctor of such stature), by saying well “you can’t know everything”.
Yesterday I sent an email to Dr. IAmKing. My case is unusual, its had a lot of twists and turns, I felt he would find my post-play findings worthwhile, and remember he had sent me a previous email inquiring as to my health. It was an outline of what I had learned after he had performed my surgery on October 30th of last year. I listed that his surgery confirmed the fact that the tumor had been misdiagnosed in 1990, that he had suggested other surgeries, that I asked him about Proton Therapy and that he felt I was not a candidate. That I had consulted with Mass General and Sloan Kettering and that they felt more surgery would be a detriment, that radiation, particularly Proton Therapy would be my best option. Lastly, I wrote that I hope that by my writing this e-mail, that other chondrosarcoma patients would benefit; Proton Therapy is a very viable treatment for this kind of tumor. He responded. Did Dr. IAmKing say he was wrong? Did he say I didn’t know? Nope. He said this:
“Thank you for your thoughtful notes and for keeping me informed of your progress. Of course I was aware of the reports of the MGH group about proton beam therapy, as well as reports of other types of image-guided XRT for chondrosarcoma. My recommendations for you naturally incorporated my interpretations of how well these therapies work, their complication rates, the alternative treatments, and your medical history.”
I am thinking if he knew that these therapies were available, he owed it to me the patient to offer them up as possibilities, and to let me make the decision as to whether they would be right for me or not. If he didn’t mention them because he made a decision in his own head on my behalf, this not telling me everything, is sort of like lying. More importantly he has seemingly remade our history by saying that he was aware of these therapies. If he were aware, he would not have said that Proton Therapy was only for small round tumors. He just didn’t know, but he couldn’t say it. His ego wouldn’t let him admit it. In the end I find his response disappointing, but sadly predictable. I thought maybe he was different. “What was I thinking?”
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