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.
Tuesday, September 16, 2008
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?”
Thursday, September 4, 2008
Happy Anniversary
Nineteen years ago on August 19th, 1989 this happened: (http://cityroom.blogs.nytimes.com/2007/07/19/the-last-big-steam-blast-gramercy-park-1989). This blew up our apartment, and blew our minds. Jamie was four months old. Everything we owned was in our apartment…but we were out for a walk, miraculously our pets…2 cats and a turtle lived to talk about it…our fish…not so good. In the next seven months we moved from my parent's house, to a corporate apartment, to a temporary rental, to a less temporary rental. In March of 1990 our lives started to feel a bit more normal, and this happened:
I remember a very pivotal moment, although I didn’t know how pivotal it was at the time. I knew that it was memorable, but I didn’t know for how many reasons.
It was July, Jamie was 15 months old; we were out for a walk, communicating non-verbally mostly, when she looked back at me from her stroller and said, “ Hi Mama”. This was amazing. Dada had been uttered, Hi was a bit old news by then, but “Hi Mama”, this was not only great because it was the first time anyone had called me Mama, but because it actually came in the form of a sentence…there was no doubt in my mind that my fifteen month old child was a genius. This simple, happy moment was almost the moment at which everything became a lot less simple. A few days later I woke up and noticed that what at first just seemed like blurry vision, was actually double vision. This was the first sign that something was seriously not right. A few days later, and a few doctors later, an MRI showed that I had a “lesion” (doctor speak for tumor). Then this happened:
On August 29th, 1990 Jamie woke from her afternoon nap, I went into her room to see her as I usually would, but instead of taking her out of her crib to play with her, or feed her, I kissed her goodbye, and I wasn’t sure when I was coming back. I was heading to the hospital to have brain surgery. As I write this on September 3rd, 2008, I still remember that scary sad feeling…I wondered if I would see her again. I wondered if when I did, in what condition I’d be. My Mom came with me to the hospital, and as soon as I walked over that hospital threshold, I went from a person to patient; you immediately feel different. You become a number, you’re issued a paper patient bracelet, you’re asked to change into hospital attire, it’s requested that you fill out your meal plan for the length of your stay, (like you know what you’d want to eat…like you’re going to be eating), nurses come to pinch you and prod you for this and that; doctors, residents, and interns come to your room and continuously ask you the same questions about your medical past and present...and within the span of a very short time you become a part of a new neighborhood…one in which you’d rather not be living. After my Mom left, Jon arrived, and when he left around 10P, that was the end of my company. I remember feeling scared, sad, and a degree of alone that I can’t describe, and that even to this day, have not felt since…I wondered if I would see him again. I wondered if when I did see him, in what condition I’d be.
The next day, on the morning of August 30th (surgery day) a nurse came in at 5A to wake me up. I was asked to get out of bed and wash…like why is that important…where was I going? In those days you checked into the hospital a day before surgery (now you arrive the same day and walk into the operating room). Having done both, I can say neither one is better than the other. After washing, you’re rolled into a holding room on a gurney and there you lay like an extra in the movie Coma, until your number is called. There I was…I was 30 with a 16 month old baby and I was having brain surgery the day before Labor Day weekend. It was at this time that I learned one of my first hospital lessons…don’t have any major procedures performed on any national holidays. My doctor did the surgery, I went to Intensive Care, and the next time I saw him was five days later. The remaining unlucky staff is what makes you an unlucky patient. No procedures on holidays…if you can help it.
Since that day, I have always been particularly aware of where I am on its anniversary. I’ve been outdoors camping, I’ve been bobbing around at sea on a cruise ship during hurricane Charley, I’ve seen U-2 at Yankee Stadium on a beautiful moonlit night, I’ve seen Pearl Jam in a torrential rain storm at Randall's Island Stadium (when they still called it Randall's Island Stadium), I’ve been kayaking, I've been pregnant with Rachel, I’ve watched the sun set at Westhampton; last year I was in Toronto after just having left Jamie at the University at Buffalo to start her first year of college, and this year I lay in bed recovering from last year (a few days after leaving Jamie at college to start her second year of college). Every year on August 30th, no matter where I am I have a moment of silence with myself…I think the same thing…“it’s good to be here, because there have been times that I wasn’t sure I would be”. This year feels especially different given all that has happened, and also because this may be the first year Mr. Dubenschmeimer may not be celebrating as well.
I remember a very pivotal moment, although I didn’t know how pivotal it was at the time. I knew that it was memorable, but I didn’t know for how many reasons.
It was July, Jamie was 15 months old; we were out for a walk, communicating non-verbally mostly, when she looked back at me from her stroller and said, “ Hi Mama”. This was amazing. Dada had been uttered, Hi was a bit old news by then, but “Hi Mama”, this was not only great because it was the first time anyone had called me Mama, but because it actually came in the form of a sentence…there was no doubt in my mind that my fifteen month old child was a genius. This simple, happy moment was almost the moment at which everything became a lot less simple. A few days later I woke up and noticed that what at first just seemed like blurry vision, was actually double vision. This was the first sign that something was seriously not right. A few days later, and a few doctors later, an MRI showed that I had a “lesion” (doctor speak for tumor). Then this happened:
On August 29th, 1990 Jamie woke from her afternoon nap, I went into her room to see her as I usually would, but instead of taking her out of her crib to play with her, or feed her, I kissed her goodbye, and I wasn’t sure when I was coming back. I was heading to the hospital to have brain surgery. As I write this on September 3rd, 2008, I still remember that scary sad feeling…I wondered if I would see her again. I wondered if when I did, in what condition I’d be. My Mom came with me to the hospital, and as soon as I walked over that hospital threshold, I went from a person to patient; you immediately feel different. You become a number, you’re issued a paper patient bracelet, you’re asked to change into hospital attire, it’s requested that you fill out your meal plan for the length of your stay, (like you know what you’d want to eat…like you’re going to be eating), nurses come to pinch you and prod you for this and that; doctors, residents, and interns come to your room and continuously ask you the same questions about your medical past and present...and within the span of a very short time you become a part of a new neighborhood…one in which you’d rather not be living. After my Mom left, Jon arrived, and when he left around 10P, that was the end of my company. I remember feeling scared, sad, and a degree of alone that I can’t describe, and that even to this day, have not felt since…I wondered if I would see him again. I wondered if when I did see him, in what condition I’d be.
The next day, on the morning of August 30th (surgery day) a nurse came in at 5A to wake me up. I was asked to get out of bed and wash…like why is that important…where was I going? In those days you checked into the hospital a day before surgery (now you arrive the same day and walk into the operating room). Having done both, I can say neither one is better than the other. After washing, you’re rolled into a holding room on a gurney and there you lay like an extra in the movie Coma, until your number is called. There I was…I was 30 with a 16 month old baby and I was having brain surgery the day before Labor Day weekend. It was at this time that I learned one of my first hospital lessons…don’t have any major procedures performed on any national holidays. My doctor did the surgery, I went to Intensive Care, and the next time I saw him was five days later. The remaining unlucky staff is what makes you an unlucky patient. No procedures on holidays…if you can help it.
Since that day, I have always been particularly aware of where I am on its anniversary. I’ve been outdoors camping, I’ve been bobbing around at sea on a cruise ship during hurricane Charley, I’ve seen U-2 at Yankee Stadium on a beautiful moonlit night, I’ve seen Pearl Jam in a torrential rain storm at Randall's Island Stadium (when they still called it Randall's Island Stadium), I’ve been kayaking, I've been pregnant with Rachel, I’ve watched the sun set at Westhampton; last year I was in Toronto after just having left Jamie at the University at Buffalo to start her first year of college, and this year I lay in bed recovering from last year (a few days after leaving Jamie at college to start her second year of college). Every year on August 30th, no matter where I am I have a moment of silence with myself…I think the same thing…“it’s good to be here, because there have been times that I wasn’t sure I would be”. This year feels especially different given all that has happened, and also because this may be the first year Mr. Dubenschmeimer may not be celebrating as well.
Wednesday, August 27, 2008
What doesn't happen is almost as important as what does happen
It’s been two weeks and two days since my last radiation treatment. I feel improved…some what. I feel relieved and I feel reflective.
What am I thinking about? I’m pondering the events of life. Why things happen? When they happen. Why things don’t happen? How what doesn’t happen is sometimes just as important as what does happen. I’m thinking about the “fork in the road”…my forks in the road.
I’m thinking about how/why shortly after Jon and I had Jamie (19 years ago), our apartment became a casualty of a Con Edison explosion, but we happened to go out for a walk on a rainy August day with a 4 month old baby right before the explosion. If we had been in the apartment we would have more than likely been severely injured. Our next door neighbor was killed.
I’m thinking about how almost exactly a year from that explosion, I woke up one morning with double vision, a week later I was told I had a brain tumor, and three weeks after that I was having brain surgery for the first time. This was unbelievable.
I’m thinking of all the people I know and how they affect my life, and why and how I met them.
I’m thinking about how on September 11th I was on the tarmac at JFK airport, ready to take off to Los Angeles on an American Airlines plane. We were delayed because two reporters from CNN needed to get off the plane, they had apparently just gotten the news before any of us, that an AA plane had just hit the World Trade Center. My plane was held up, we were deplaned and almost as though I was being swept through the airport on a magic carpet, made my way through the crowded airport with ease, and shortly afterward onto an almost empty bus that was making its way out to Long Island where I lived. What if this plane took off? This was extraordinary.
I’m thinking about how Jon worked across the street from the World Trade Center, but hadn’t left for work yet on that day. What if he had left earlier, or the plane that bulleted its way into the Trade Center left later?
I’m thinking about how I was misdiagnosed 18 years ago, and that my tumor wasn’t what I was told it was back in 1990. In hindsight, the doctor doing my surgery was probably not up to such a complicated procedure. I chose him based on the fact that I had several other doctors at the hospital he was at, and that both he and the hospital had an outstanding reputation. Reputation isn’t everything; I know that now. Because my surgeon wasn’t up for this procedure (not many surgeons, if any back then could have been…it was very complicated), he treaded lightly, not really doing what he needed to do to get an accurate pathology, but by doing so, he also didn’t rob me of too much neurological function. I lost my hearing in one ear, I had facial paralysis (which returned). It could have been much, much worse. But it wasn’t. This is lucky.
I’m thinking about how I had a doctor that examined me every year, but never looked hard enough at the yearly MRI’s to notice that my tumor was growing. It grew to the size of orange, and yet miraculously we (the tumor and I) lived alongside each other. Considering all the nerves that it was next to, it could have made it so that I needed a feeding tube, a breathing tube, lost my sight…killed me; but it didn’t. This was a miracle.
I’m thinking about how I finally met a neurologist that felt that there was something significant enough on my MRI that I should seek a consult with a neurosurgeon. This was good timing.
He referred me to three surgeons. Two of the three thought the tumor was a chondrosarcoma. These two surgeons suggested very aggressive surgery. The other surgeon thought that it was a different, more nebulous tumor, and mapped out a much less invasive surgery. I chose this surgeon because I felt it was better to have a less invasive surgery to find out exactly what the tumor was. This was smart thinking.
The surgery proved that it was a chondrosarcoma. Now I was armed with a real diagnosis. My surgeon suggested two other surgeries to remove the tumor. I was able to stay calm in the eye of the storm. I was able to stay positive. This was amazing.
My surgeon didn’t feel that Proton Therapy was effective for my type of tumor. He felt that Proton Therapy was only for small, round tumors. I was perseverant. I realized that doctors, no matter how good, or well regarded they may be, are just people, and they don’t know everything about everything. This was insightful.
I found out that Proton Therapy is not just for small, round tumors, but more specifically for large, hard to reach, irregular tumors. I found out that this radiation therapy is the best therapy for chondrosarcomas; that there is evidence that surgery actually stimulates the growth of chondrosarcomas, and that there is quite a long history of success for people who have been treated with Proton Therapy for chondrosarcomas. This was enlightening, and fortifying; this was the best chance at a cure that exists.
I’m thinking about how I was able to find my way to a radiation oncologist at Mass General that probably knows more about the kind of tumor that I have/had than any other doctor in the country, and I did it by self-referring myself. This feels like…I don’t know. Some would say devine guidance, some would say law of attraction, and some would say luck. This was amazing. This may have saved my life.
When it was time to go to Mass General Hospital in Boston for seven weeks for treatment, I was able through the help of friends to find an apartment. A friend of a friend was leaving her apartment in Boston for almost exactly the time period I needed to have one, and she refused to accept any payment for the apartment. The apartment was only three blocks from the hospital. This was good fortune.
Friends and family moved their own schedules and commitments to help me out, which made things so much easier than it otherwise would have been. This was so appreciated.
I’m thinking about how much more experienced and confident I am now, than I was when I was first diagnosed. That very little trumps age and wisdom. I don’t think I would have found my way to Proton Therapy 18 years ago (it did exist back then, but in embryonic form). The internet didn’t exist, I still lived in the belief that doctors knew everything, and if they didn’t, they would say so. I wouldn’t have questioned my doctor back then. Always feel like you can question your doctor. I’m thinking about how incredible it is, that even though my tumor was growing, it grew so slowly, that Heidi was able grow up enough to find a way to its end.
And then there were the other things that have happened recently…meeting a woman randomly in front of a hotel near the hospital that had had brain surgery two months before I started radiation, five months after I had my second brain surgery…we met and we talked and that was timely and comforting.
When our car died three weeks before we were going to need it most, we were already resolved to the fact that we might not be able to find the car we wanted before I started radiation. Then I had a dream on a Tuesday, and on the following Saturday a salesman we met for five minutes, two weeks previous, called us to say that he had unexpectedly come into possession of precisely the car we were looking for, were we still looking? We were. This was clairvoyant! The next call we got asking us if we still needed a car, was a week before my radiation treatments were ending. We didn’t need one anymore.
Just when I needed to stay in a place that didn’t have stairs to climb, and was a bit closer to the Proton Center, I lost the keys to the apartment I was staying in and had to stay in a hotel until the locksmith could come and change the locks…these things make me wonder. What is luck? What is timing? What is planned? What isn’t planned? What is the power of positive thinking? What is a miracle?
I cannot stop thinking about the idea that what happens is just as important as what doesn’t happen. I can not stop thinking about how many other things that have happened to me in my life that I haven’t mentioned here seem driven my some other force. What is that?
What am I thinking about? I’m pondering the events of life. Why things happen? When they happen. Why things don’t happen? How what doesn’t happen is sometimes just as important as what does happen. I’m thinking about the “fork in the road”…my forks in the road.
I’m thinking about how/why shortly after Jon and I had Jamie (19 years ago), our apartment became a casualty of a Con Edison explosion, but we happened to go out for a walk on a rainy August day with a 4 month old baby right before the explosion. If we had been in the apartment we would have more than likely been severely injured. Our next door neighbor was killed.
I’m thinking about how almost exactly a year from that explosion, I woke up one morning with double vision, a week later I was told I had a brain tumor, and three weeks after that I was having brain surgery for the first time. This was unbelievable.
I’m thinking of all the people I know and how they affect my life, and why and how I met them.
I’m thinking about how on September 11th I was on the tarmac at JFK airport, ready to take off to Los Angeles on an American Airlines plane. We were delayed because two reporters from CNN needed to get off the plane, they had apparently just gotten the news before any of us, that an AA plane had just hit the World Trade Center. My plane was held up, we were deplaned and almost as though I was being swept through the airport on a magic carpet, made my way through the crowded airport with ease, and shortly afterward onto an almost empty bus that was making its way out to Long Island where I lived. What if this plane took off? This was extraordinary.
I’m thinking about how Jon worked across the street from the World Trade Center, but hadn’t left for work yet on that day. What if he had left earlier, or the plane that bulleted its way into the Trade Center left later?
I’m thinking about how I was misdiagnosed 18 years ago, and that my tumor wasn’t what I was told it was back in 1990. In hindsight, the doctor doing my surgery was probably not up to such a complicated procedure. I chose him based on the fact that I had several other doctors at the hospital he was at, and that both he and the hospital had an outstanding reputation. Reputation isn’t everything; I know that now. Because my surgeon wasn’t up for this procedure (not many surgeons, if any back then could have been…it was very complicated), he treaded lightly, not really doing what he needed to do to get an accurate pathology, but by doing so, he also didn’t rob me of too much neurological function. I lost my hearing in one ear, I had facial paralysis (which returned). It could have been much, much worse. But it wasn’t. This is lucky.
I’m thinking about how I had a doctor that examined me every year, but never looked hard enough at the yearly MRI’s to notice that my tumor was growing. It grew to the size of orange, and yet miraculously we (the tumor and I) lived alongside each other. Considering all the nerves that it was next to, it could have made it so that I needed a feeding tube, a breathing tube, lost my sight…killed me; but it didn’t. This was a miracle.
I’m thinking about how I finally met a neurologist that felt that there was something significant enough on my MRI that I should seek a consult with a neurosurgeon. This was good timing.
He referred me to three surgeons. Two of the three thought the tumor was a chondrosarcoma. These two surgeons suggested very aggressive surgery. The other surgeon thought that it was a different, more nebulous tumor, and mapped out a much less invasive surgery. I chose this surgeon because I felt it was better to have a less invasive surgery to find out exactly what the tumor was. This was smart thinking.
The surgery proved that it was a chondrosarcoma. Now I was armed with a real diagnosis. My surgeon suggested two other surgeries to remove the tumor. I was able to stay calm in the eye of the storm. I was able to stay positive. This was amazing.
My surgeon didn’t feel that Proton Therapy was effective for my type of tumor. He felt that Proton Therapy was only for small, round tumors. I was perseverant. I realized that doctors, no matter how good, or well regarded they may be, are just people, and they don’t know everything about everything. This was insightful.
I found out that Proton Therapy is not just for small, round tumors, but more specifically for large, hard to reach, irregular tumors. I found out that this radiation therapy is the best therapy for chondrosarcomas; that there is evidence that surgery actually stimulates the growth of chondrosarcomas, and that there is quite a long history of success for people who have been treated with Proton Therapy for chondrosarcomas. This was enlightening, and fortifying; this was the best chance at a cure that exists.
I’m thinking about how I was able to find my way to a radiation oncologist at Mass General that probably knows more about the kind of tumor that I have/had than any other doctor in the country, and I did it by self-referring myself. This feels like…I don’t know. Some would say devine guidance, some would say law of attraction, and some would say luck. This was amazing. This may have saved my life.
When it was time to go to Mass General Hospital in Boston for seven weeks for treatment, I was able through the help of friends to find an apartment. A friend of a friend was leaving her apartment in Boston for almost exactly the time period I needed to have one, and she refused to accept any payment for the apartment. The apartment was only three blocks from the hospital. This was good fortune.
Friends and family moved their own schedules and commitments to help me out, which made things so much easier than it otherwise would have been. This was so appreciated.
I’m thinking about how much more experienced and confident I am now, than I was when I was first diagnosed. That very little trumps age and wisdom. I don’t think I would have found my way to Proton Therapy 18 years ago (it did exist back then, but in embryonic form). The internet didn’t exist, I still lived in the belief that doctors knew everything, and if they didn’t, they would say so. I wouldn’t have questioned my doctor back then. Always feel like you can question your doctor. I’m thinking about how incredible it is, that even though my tumor was growing, it grew so slowly, that Heidi was able grow up enough to find a way to its end.
And then there were the other things that have happened recently…meeting a woman randomly in front of a hotel near the hospital that had had brain surgery two months before I started radiation, five months after I had my second brain surgery…we met and we talked and that was timely and comforting.
When our car died three weeks before we were going to need it most, we were already resolved to the fact that we might not be able to find the car we wanted before I started radiation. Then I had a dream on a Tuesday, and on the following Saturday a salesman we met for five minutes, two weeks previous, called us to say that he had unexpectedly come into possession of precisely the car we were looking for, were we still looking? We were. This was clairvoyant! The next call we got asking us if we still needed a car, was a week before my radiation treatments were ending. We didn’t need one anymore.
Just when I needed to stay in a place that didn’t have stairs to climb, and was a bit closer to the Proton Center, I lost the keys to the apartment I was staying in and had to stay in a hotel until the locksmith could come and change the locks…these things make me wonder. What is luck? What is timing? What is planned? What isn’t planned? What is the power of positive thinking? What is a miracle?
I cannot stop thinking about the idea that what happens is just as important as what doesn’t happen. I can not stop thinking about how many other things that have happened to me in my life that I haven’t mentioned here seem driven my some other force. What is that?
Tuesday, August 19, 2008
I Had a Dream About a Cinnamon Babka
I find myself having cravings for very specific foods, which is funny because I really don’t have that great an appetite yet. So when I get a craving, I do like to yield to it.
The other night I dreamed about a cinnamon babka. For those of you that don’t know what a babka is…Webster’s says it is a loaf shaped coffee cake of sweet yeast dough to which raisins, chocolate or nuts can be added. Trust me this description doesn’t do a babka justice. I will take a moment to say that while all babkas are good…the most available variety seems to be chocolate, but the one I love the most is the cinnamon. There is a really good Jewish bakery about 25 minutes from my house; but this does sometimes feel like quite the trek to capture one’s babka…but on the morning I woke up from my babka dream, Jon needed to get a ride to Great Neck (home of the babka), because there was track work on all stations up until Great Neck. How funny is that? So off we went. He drove to Great Neck and went into bakery to get the babka before I was to drop him at the train station right next door. I was specific about the fact that my first choice was a cinnamon, but that I would take a chocolate. I’ve been to this bakery many times over the years and I have not in all that time spied a cinnamon babka, I was even wondering on the way over to the bakery, whether they even still made the cinnamon variety. I was expecting a chocolate one…a cinnamon would be a real prize.
The story goes something like this…I wasn’t there, so I only know what I have been able to piece together from the different accounts of this convoluted babka story. Jon went into the bakery and pointed to what he thought was a chocolate babka. He then asked what kind of babkas they had that day…he heard the man say that there was one cinnamon one, and feeling that he had also just seen and pointed to a chocolate one, called me on my cell to find out which one I would prefer…and why did he even have to ask? Let’s just say these things do tend to happen. In our mad dash to get out of the house to the bakery, and to make Jon’s train on time, I had left my phone at home. When he couldn’t reach me, he opted for what he thought was the safe decision...and purchased a chocolate babka…or so he thought. He happily left the bakery with cake box in hand…and a delicious Great Neck pastry for himself for the ride into the city. I dropped him at the station, (I should say we dropped him, Rachel was with me), and we proceeded home. All the way home, I was imagining how good this chocolate babka would be…it wasn’t the cinnamon one of my dreams, but it was still going to be good.
Rachel and I got home, opened up the box. It didn’t look like a babka…it had the delicious streusel topping of a babka, but it just didn’t look right. I cut into it…it looked more like a pound cake, but perhaps they had changed their recipe. I had to eat it to know for sure…nope, definitely not a babka…a chocolate pound cake for sure. Buzz kill!
I could have let this go, and enjoyed the pound cake…but a pound cake is no babka…and I had had my heart set on it. I couldn’t head right back over to Great Neck (I had things to do)…but an hour later Rachel and I took the journey back to the bakery. I walked up to the counter and said “I have a sad story to tell, my husband came in here about an hour ago, and wanted a babka, and you gave him a pound cake…here it is, you can see it’s not a babka”. The guy at the counter, said “Yes I remember that guy, he pointed to a chocolate pound cake and said he wanted a babka. I told him that that what he was pointing to wasn’t a babka, that we were all out of chocolate babkas, but I had one cinnamon left”. This must have been when Jon called about the cinnamon babka, but didn’t hear the other part about the fact that there were no chocolate babkas left. When Jon couldn’t reach me, he pointed to the streusel pound cake that he believed was a babka…and the rest is history. The counter guy, asked me what I wanted to do and I said “well, what can I do, you have no more babkas, I guess I’ll just keep the pound cake”. And then he said the most marvelous thing…he said “we still have that one cinnamon babka left if you want me to exchange the pound cake for that?” Oh my god, my cinnamon babka was still there…like it had been waiting for me…on a busy weekend morning when all the rest of the babkas had sold out before 10A…there was my cinnamon babka…the first one I have had in years, perhaps one of the few they even make in a day, or even a year…the one of my dreams. Dreams coming true again. It may not be the Prius of before, but on this morning it may as well have been.
The other night I dreamed about a cinnamon babka. For those of you that don’t know what a babka is…Webster’s says it is a loaf shaped coffee cake of sweet yeast dough to which raisins, chocolate or nuts can be added. Trust me this description doesn’t do a babka justice. I will take a moment to say that while all babkas are good…the most available variety seems to be chocolate, but the one I love the most is the cinnamon. There is a really good Jewish bakery about 25 minutes from my house; but this does sometimes feel like quite the trek to capture one’s babka…but on the morning I woke up from my babka dream, Jon needed to get a ride to Great Neck (home of the babka), because there was track work on all stations up until Great Neck. How funny is that? So off we went. He drove to Great Neck and went into bakery to get the babka before I was to drop him at the train station right next door. I was specific about the fact that my first choice was a cinnamon, but that I would take a chocolate. I’ve been to this bakery many times over the years and I have not in all that time spied a cinnamon babka, I was even wondering on the way over to the bakery, whether they even still made the cinnamon variety. I was expecting a chocolate one…a cinnamon would be a real prize.
The story goes something like this…I wasn’t there, so I only know what I have been able to piece together from the different accounts of this convoluted babka story. Jon went into the bakery and pointed to what he thought was a chocolate babka. He then asked what kind of babkas they had that day…he heard the man say that there was one cinnamon one, and feeling that he had also just seen and pointed to a chocolate one, called me on my cell to find out which one I would prefer…and why did he even have to ask? Let’s just say these things do tend to happen. In our mad dash to get out of the house to the bakery, and to make Jon’s train on time, I had left my phone at home. When he couldn’t reach me, he opted for what he thought was the safe decision...and purchased a chocolate babka…or so he thought. He happily left the bakery with cake box in hand…and a delicious Great Neck pastry for himself for the ride into the city. I dropped him at the station, (I should say we dropped him, Rachel was with me), and we proceeded home. All the way home, I was imagining how good this chocolate babka would be…it wasn’t the cinnamon one of my dreams, but it was still going to be good.
Rachel and I got home, opened up the box. It didn’t look like a babka…it had the delicious streusel topping of a babka, but it just didn’t look right. I cut into it…it looked more like a pound cake, but perhaps they had changed their recipe. I had to eat it to know for sure…nope, definitely not a babka…a chocolate pound cake for sure. Buzz kill!
I could have let this go, and enjoyed the pound cake…but a pound cake is no babka…and I had had my heart set on it. I couldn’t head right back over to Great Neck (I had things to do)…but an hour later Rachel and I took the journey back to the bakery. I walked up to the counter and said “I have a sad story to tell, my husband came in here about an hour ago, and wanted a babka, and you gave him a pound cake…here it is, you can see it’s not a babka”. The guy at the counter, said “Yes I remember that guy, he pointed to a chocolate pound cake and said he wanted a babka. I told him that that what he was pointing to wasn’t a babka, that we were all out of chocolate babkas, but I had one cinnamon left”. This must have been when Jon called about the cinnamon babka, but didn’t hear the other part about the fact that there were no chocolate babkas left. When Jon couldn’t reach me, he pointed to the streusel pound cake that he believed was a babka…and the rest is history. The counter guy, asked me what I wanted to do and I said “well, what can I do, you have no more babkas, I guess I’ll just keep the pound cake”. And then he said the most marvelous thing…he said “we still have that one cinnamon babka left if you want me to exchange the pound cake for that?” Oh my god, my cinnamon babka was still there…like it had been waiting for me…on a busy weekend morning when all the rest of the babkas had sold out before 10A…there was my cinnamon babka…the first one I have had in years, perhaps one of the few they even make in a day, or even a year…the one of my dreams. Dreams coming true again. It may not be the Prius of before, but on this morning it may as well have been.
Monday, August 18, 2008
First week after radiation...it's over, but it's not over
Before I had surgery last October, my voice sounded like Minnie Mouse, and I felt as though I spoke a bit like Elmer Fudd. I had difficulty swallowing which made every meal an adventure. Seven months after surgery I felt as though I had made quite a bit of improvement. I knew that the tumor was still a big problem, but I felt better on a day-to-day basis than I had felt in months.
Today, a week after my last radiation treatment…I’m sad…so crazy, I know. I’m happy that radiation is over, but my tongue seems back to ground zero…I’m having trouble enunciating again, my voice is hoarse (although not as bad as pre-surgery), swallowing is difficult…I need to think about it, its not so automatic. My head hurts, my sinuses hurt, my throat hurts, and my memory, which I was warned could be affected…feels affected. I feel myself phumphering for words. I’m told this is due to a combination of total body exhaustion and swelling from the radiation; it will take a few months for things to normalize. It took seven months for things to improve after surgery, and it could take about that long for things to improve on this go around.
I was told that some things might be permanent. I’m thinking what things can I live with, or rather what things can I live without?
It is disconcerting that while the radiation may be over…the side effects are not, and that what I need most right now, is something that I possess the least of…patience.
Today, a week after my last radiation treatment…I’m sad…so crazy, I know. I’m happy that radiation is over, but my tongue seems back to ground zero…I’m having trouble enunciating again, my voice is hoarse (although not as bad as pre-surgery), swallowing is difficult…I need to think about it, its not so automatic. My head hurts, my sinuses hurt, my throat hurts, and my memory, which I was warned could be affected…feels affected. I feel myself phumphering for words. I’m told this is due to a combination of total body exhaustion and swelling from the radiation; it will take a few months for things to normalize. It took seven months for things to improve after surgery, and it could take about that long for things to improve on this go around.
I was told that some things might be permanent. I’m thinking what things can I live with, or rather what things can I live without?
It is disconcerting that while the radiation may be over…the side effects are not, and that what I need most right now, is something that I possess the least of…patience.
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