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.

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.

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.

Scorched Earth

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?”

Thursday, September 4, 2008

Happy Anniversary

Nineteen years ago on August 19th, 1989 this happened: ( 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.