A New York Story

I haven’t blogged in a while, but this seemed like a story worth writing about…there are just those moments that you feel should be committed to paper…or whatever it’s called that we’re writing on these days that seems paper-like.

I was meeting my friend Lisa for lunch a couple of days ago, she and I have known each other for close to twenty-five years. She and I knew each other before I had my first daughter, before I was diagnosed with my brain tumor, before my first brain surgery. She helped bring me home from the hospital after the surgery on the day that I was released. She also helped me raise money for the walk I’ve just completed. We’ve known each a long time.

I was waiting for her in a downtown restaurant…a “bistro”, I was checking my Blackberry for emails, I texted her to let her know I had arrived, and no sooner had I done that, when I looked up and saw that she was coming through the front door of the restaurant. She rushed over to the table, put her stuff down, and asked if I could order her an iced tea while she went to the Ladies Room. She was in a rush because she was coming from work, which is in Brooklyn. She had driven into the city, and she only had so much time before she was going to have to drive back out to Brooklyn-we wanted to make the most of this time we had together. I ordered the iced tea, and no sooner had she sat down, when the guy…a kid really, sitting next to me on my left side
“my deaf side”, asked if I could “just read him a paragraph from an article in the New York Times”? I thought it was a bit odd, but I thought, “why not, and how long, and how bad could this be?” So I did. Lisa was reading the menu to figure out what she wanted to eat, so it wasn’t like it was taking time away from us. I wasn’t really absorbing what I was reading. After I was done reading, he said, “thank you, I just wanted to make sure I was reading it correctly”. I do remember thinking that he seemed to have a good grasp of the English language. I wondered why if he spoke English, and probably read English, did he need someone to read something to him…but whatever. Then I noticed that he was wearing a stethoscope around his neck. At this point Lisa had finished looking over the menu and was ready to order. The waitress came over to ask if we knew what we wanted. I had decided before Lisa arrived what I wanted, so we gave the waitress our orders. I began to talk a bit to this guy…this kid. After I mentioned his doctor paraphernalia, he brought our attention (Lisa was listening now too), to the fact that he was wearing a white lab coat with the scripted “NYU Hospital logo” on it, as if this would tell us all we would need to know. He said, “I’m a Resident at NYU Hospital”. I said, “Oh really?” My first thought was that the restaurant we were eating at was quite a long way from the hospital. My second thought was that the logo was not the NYU hospital logo I was familiar with…not at all…not one little bit. How many people are fortunate, or unfortunate enough to know what the NYU Hospital logo really looks like? The third thing was that it was odd that a doctor…excuse me a Resident would be dining with his stethoscope around his neck if this were in fact their down time, and it must have been his down time, because as I said…we were quite a way from the hospital. The restaurant we were all dining at was in Greenwich Village, NYU hospital is all the way near 32nd Street and 1st Avenue…this is a long way to travel to eat…especially to eat alone-this is about 20 downtown blocks and several more blocks going towards the Westside of Manhattan. He told Lisa and I that he was a Psychiatric Resident. Did this mean he was studying Psychiatry, or that he was a resident in the Psychiatric ward? I asked him how it was to be a Psychiatry Resident? He said, “that’s a big question.” I asked him as a “Psychiatrist” what his feelings were regarding death and dying? He talked a bit about that; he seemed to have some real thoughts about this subject. He thought it was better to live every day to its fullest, and that dying is what was hard. We agree about that…this makes me think he had some kind of information or experience in this area. Was he a doctor or did he just play one on TV? Was he an actor? We were after all, in New York, not far from New York University, which has an excellent theater school. He continued to talk, and I continued to think. I noticed that he had a Martini on the table, and that he had finished half of it. I asked him about his Martini. He said, “he’s off of work”. I thought, it’s lunchtime, and he’s a Resident, but maybe he’s had a very tough day, or maybe he’s just completed a night shift. But wouldn’t he prefer to sleep? I brought up my walk, and my brain tumor…the topic of “Psychiatry” and the “brain” leads the conversation there-he doesn’t seem all that familiar with much of the terminology I was using, but that doesn’t mean anything, often I’ve found myself knowing more about this area of the anatomy than other doctors-it’s a specialized field. I suggested that he take a look at the Brain Matters website. I thought you “never know”. I thought he may be crazy, but he may be connected, or he may be crazily connected. At one point in all of this, I asked him how old he was, and he told me he was 26. He told me he had gone to school 4 years as an undergrad, 4 years as a medical student, and now he was in his first year of Residency…the math worked. He asked me how old I was, and I told him-he found that hard to believe, so either I look better than I think I do, or he was looking for a donator of his own. Finally after what was probably 15 or 20 minutes of our talking, (Lisa chimed in now and then to the conversation with comments and questions of her own), I said, well “it’s been good meeting you, but my friend and I have only so much time, so we’re going to get back to our lunch.” He said “okay, I’m just going to go out for a cigarette, will you vouch for me if they come back and want to know where I went, and let them know that I’ll be back to pay the bill?” I said, “first of all, as a doctor you should know that you shouldn’t be smoking cigarettes, and secondly, I can’t vouch for you, I don’t even know you, why don’t you just pay the bill and then go out and smoke the cigarette?” He smiled. He then grabbed his nice designer shopping bag that he’d apparently brought to lunch with him-inside it was the newspaper with which he had started our conversation. As he was on his way out the door, both Lisa and I looked at each other and said, “he’s not coming back, and he’s not going to pay the bill!” He walked out of the restaurant. I looked out the windows of the restaurant onto the street. You could see everything from where I was seated. Our “Resident” friend went out and lit his cigarette, but he didn’t stay at the corner, he had no intention of coming back inside, he kept on going. Almost as soon as the Resident left the corner, the manager left the restaurant and took off down the street after him. A few minutes later when the manager returned, I asked if he had caught up with the doctor? He said “No, but he had caught up with his shopping bag which he had left on the street.” I asked the Manager what was inside the bag. He told me that there was only a newspaper inside. I guess our “Resident” thought that he would easily be able to pick up a new “meeting device” somewhere else.

So he wasn’t a doctor. Maybe he was a mental patient…a “psychiatric resident”, maybe he was an actor; maybe he was just someone who didn’t have enough money to pay his bill? This was funny and yet not, all at the same time. To me there were two interesting things about this meeting. The first thing was that if he had connected with someone who hadn’t come to know as much about hospitals, doctors, and medicine as I’ve come to know over the years, that perhaps his outcome might have been different…maybe better for him…maybe not. The other interesting thing is that despite his obvious lack of credentials, I’ve met doctors who have had official credentials, and demonstrated less sympathy, compassion and knowledge. This makes me wonder who he really was, and what his real story was about. It also makes me think about why things happen. Guess there were actually three interesting things about this meeting. Ah… New York!

Some things can’t be expressed on film or video blog. Some things you have to write down.

When I was speaking at Fairfield Ludlowe High School yesterday one of the students asked me how I thought what I’ve been through had changed me? This of course is a huge question. It would take almost an entire class to answer just this question. But I think if I had had the time to think about it beforehand, the way I’ve had since he asked, I would say that it has given me the understanding of the power of the ability to “keep on keepin’ on”. If today is not good, tomorrow may be better, if you don’t feel what one doctor is saying to you, then find another doctor. If the weather is bad today, then there’s the possibility it’ll be better tomorrow. This walk that I’m taking symbolizes all of that to me. So far I’ve had terrific weather, that’s been great, but I’ve also gotten lost and my cell phone has run out of battery power. Things that I was hoping would happen didn’t, but I keep on keepin’ on. Perhaps, I always had a bit of this in me, but I know I’ve needed to have it for all that I’ve been through. And so…I’m, walking the walk, which in some way or another I feel I’ve been doing for some time now, even before I took that first step out the door this last Saturday. Check out www.brain-matters.org, to learn more about the walk.

As If Walking Wasn’t Enough

In a few days it will be 90 days from the day I start walking from my house to Mass General Hospital. This walk has metamorphosed.

When I first thought about how I could talk to people about brain tumors and the need for more funding and research, I had also just started to have strange seizure like events-I was advised by my doctors not to drive until they figured out what was going on with me. I had to walk everywhere I wanted to go. When I needed to go somewhere further than I could walk I had to wait, and be dependent on others until they could take me where I wanted to go. These circumstances gave me a lot of time to think about my life and what I wanted to do, what my future would be, what the meaning of all I had been through, and what I was going through now might be about. Was there a meaning? Could there be a meaning made out of this situation? The fact that I was doing so much walking gave birth to the idea of taking a walk, a long walk. This would be a walk I decided I wanted to take. I decided I would walk and tell people about my own personal story. I thought that by doing this it would shine a light on a subject that I knew didn’t have a lot of light, and that it perhaps could be inspirational to people going through the dark times I had known first handedly, and that I would be able to raise funds for a cause that was extremely personal to me. This walk would give me a sense of power in what was feeling like a power sapping event on my continuing illness road. I wanted a way to turn the bad into good. I wanted a way to look at what had been at times for me, very sad, or totally enervating. I wanted to turn my experience (as best as I was able to anyway), into one that was positive. I believe that most people are not all that aware of brain tumors unless they themselves have been personally affected by brain tumors. My feeling was that once people were made more aware, they of course would want to donate to the cause. Right?

When I thought about where I would walk, I didn’t have to think long…well, that’s not entirely true, I wanted to walk from my house to Mass General Hospital because this would of course be emotionally significant to me, but it’s 250 miles (no short walk). In my mind, it would be a way of putting a powerful sense of positivity on the same trip I made every week for seven weeks when I went to Francis H. Burr Proton Center in Boston at that same Hospital. It’s not that the outcome of my treatment at that hospital wasn’t positive-it was. It was the fact that I had to go then, and was filled with anxiety about the effects and the outcome. I knew with every passing week that while I was battling the tumor in my skull, I would not have any idea what success was achieved for months. I knew this-I knew that I felt sicker every week, and that my hair was falling out. On this trip that I would be planning to take from my house to Boston, I would be the decider. I would leave knowing that the radiation had worked, that I was stronger, and that I was going because I chose to go. I could decide when and how, and not only that, I could talk to people and let them know that the outcome of patients with brain tumors could be positive, that we’re out here. I would tell people that there needs to be more research and funding, so there can be even more survivors out there. So that’s how the baby steps started stepping.

I never imagined back two years ago when I thought of this idea, all of what I would have been through since that day. I’m driving now, which is good. I’m training to walk ten miles a day, which will when divided over the total mileage it takes to get to Boston, and a few down days for rest in between my “walking days” will take me a month. I’ll leave on October 1st, and I plan on arriving in Boston on November 1st.

After I decided to do the walk, a friend of mine and I came up with what we thought was a fantastic idea, and that was to include schools in this walk. I would walk and stop at the various schools along the walking route, which we decided would be the Boston Post Road. The Boston Post Road according to Google Maps has the best walking route. It has the most sidewalks, and what looks like from the satellite to be the flattest terrain. I would talk to the kids at these schools about brain tumors, the fact that it’s the number two cause of deaths in kids under the age of 20. I would among other factoids, also mention that we all should wear headsets because there is more and more information that indicates the strong connection between brain tumors and cell phones. I would also stress that non-cancerous brain tumors can be as deadly and life altering as cancerous ones, and that in order to make more medical progress-there needs to be more research, and of course more funding. The kids would donate if they felt they could, if not they would just walk a mile with me along my walking route. If they couldn’t walk along the route for school security reasons, they would walk with me on their school property. These things would all be worked out with the schools. The mile walk on campus was meant more as a symbol of support for the cause. I would say goodbye after the walk and or talk, and walk on. Great, right? Well, what I’ve learned about certain schools and the bureaucracy of schools, of people, of neighborhoods, of fundraising, of healthcare, and of non-profits since starting Brain Matters and Walking Miles 4 Brain Matters has been formed, has been incredible. It’s a documentary in itself. I thought this walk would be about what I would be able to teach other people; little did I know how much I would be learning. Who could have imagined the maze? I have made progress; I just am quite surprised by the lack of “help”, by whom I thought would have been natural helpers. The school year has ended, and there is still the start of next year to accomplish things, but the amount of time it takes to do things, has proven to me mind-boggling. We have schools that are participating, some for the walk, others just for the talk, and then I’ll walk onward, I’m fine with this, because it still gets the word out, what it does effect is Brain Matters’ ability to raise the funds we were hoping to raise, not only to make the walk, but to film the walk…but the beat goes on.

The biggest disappointment remains my home town school, but we’re still working on that, they can’t commit to getting the students involved; the school running track may be an issue because it’s new. If we can’t walk there, where can we walk? Who we need to talk to has been confusing, the amount of support has been limited. The funny thing, although not so funny, is that if asked the school, I’m sure they would say they’ve been very helpful, they’ve met with me, they will get their charity clubs involved at the beginning of the year, but they can’t effect the school calendar, the schools rules, the timing and the system. That’s true, it’s all the people that need to be talked to, to make something happen, that keeps the something that could be really good, from really happening. This isn’t Washington D.C afterall, this is Port Washington. The other thing is that Brain Matters is a new charity, we’re not the Cancer Society or ALS, and that doesn’t get us instantly into the VIP room. We’re the little engine that could, or trying to be. My experience has been that public schools have been more difficult to work with to arrange and create fundraisers; it has not been the same with private schools, not as many rules…it’s different. I’ve also learned a lot about people, both good and not so good. Some people say they’re going to do, and do. Some just say they’re going to do and don’t. It’s sad when you believe that people who say that they’re going to do and then they don’t, because I need to both believe from a position of hope (it’s what has gotten me through some of my hardest times), and also because I just need so badly what people say they’re going to do. It’s not easy needing things so badly. Whatever it is that someone says they’re going to help with (it could be as small as picking something up from a certain location that is needed for something), we need that help. A person may be offering money, maybe it’s time, or maybe it’s connections to other people with money and time. I’ve learned about funding, about myself, my energy (what I have, what I’ve lost due to health, and perhaps age), my tenacity (no, I haven’t learned as much there, I knew I had that). I suppose that I was naïve in thinking that because Brain Matters is a non-profit, and such a good cause, that people would naturally feel compelled to donate. It’s not the case. Say it ain’t so! I’m so appreciative to those that have either donated their time or money, some people have donated both their time and money, but then there are those that haven’t. Those people have really surprised, and for lack of a better word…disappointed me. I of course remain hopeful that they will support Brain Matters in the future. So on the days that I’m wiped out, wiped out because I’ve worked as many hours in a day as I’m capable of working, and I wonder if I’ll be able to raise enough funds to make this walk happen…I just think…I have to walk. I have to walk because this is so much more to me than a walk! I don’t know if I’ve explained it well enough. I hope so, but I don’t even know if it’s possible. Love to all of you that have gotten me this far. Please check out the interview on Patch.com about the Brain Matters walk http://portwashington.patch.com/articles/port-washington-brain-tumor-survivor-founds-brain-matters-awareness-foundation

What was that you said?

Just like so many things, it’s all in how you choose to look at it I guess. One of the side effects of my first surgery has been the loss of hearing in my left ear. This may not seem like much, because after all I still have hearing, and for this I’m extremely grateful. However, the difference between hearing in one ear and hearing in both ears is still a big difference, which you may not understand until you’ve lived it. For instance, when you’re driving and you hear an emergency vehicle, you’re never quite sure from which direction that vehicle is coming; you don’t know which side of the road to pull over to, or if you need to pull over at all-it could be possible that emergency vehicle you’re hearing isn’t even within what would be considered your zone of concern. Then there are the times when someone yells your name down the block, and the block is crowded and the person yelling is far away. You may look for a long time before you find that person-that is if you ever find them at all. I can remember a time, when my mother and I were both outside her house, but not near each other. She was in the front and I was in the back-she called my name, and I continued to do the same until we both walked in a complete circle around the house, not ever connecting with each other- neither one of us stopping while calling out to the other one. Finally after about five minutes, I decided to stand still and she ran into me. We’re both deaf in one ear and we weren’t able to tell from which direction the other one was calling. We may very well have done this for much longer than five minutes with no real idea or indication where either one of us was located if I hadn’t stopped moving. Just glad the situation wasn’t an emergency. I think she was calling me to come look at a flower that had bloomed. Another thing about being a singular h/earer is when I’m in an important meeting, and the location is in a conference room or maybe a restaurant-I have to think a lot about where I will sit within that group before I actually sit, and if all the sitters haven’t arrived yet, oh that’s a real tension heightner. I must also always assess to the best of my ability what noise or noisemakers I potentially could be sitting next to. I know there’s a good chance I won’t be able to hear everyone at the meeting, and I need to think about who will be talking the most, and even more importantly who do I need to hear the most. Again, these are just things. Then there is stereophonic sound. This is lost on me. A bit sad really. I haven’t heard stereophonic sound since maybe 1989 when I went to an Elton John concert. I’ve noticed people who’ve made a concerted effort to use only one of the earplugs on their cell phone headsets in order to still hear the outside world while they’re talking to someone on the phone. I suppose this is the same concept behind one-piece headsets. This kind of rigging doesn’t change a thing for me; I have the same complete concentration to whomever I’m speaking to, with total silence to the outside world without this rigging. I have this because I have only one working ear. But all these things considered it’s still much, much better to hear than not to hear. By the way, better to use a headset than not to use a headset for health reasons, whether you have the use of one ear or two. That being said, what I hear can sometimes be quite interesting, even funny...depending on how you look at it, and after 22 years of not hearing with both ears, that’s how I’ve decided to look at it. There are many things I’ve heard wrong, enough probably to fill lots of pages, but recently I thought I would write a few of them down. Here are a few of those things:

Recently I was getting my hair cut by my friend Sasha. I’ve known Sasha since before I had my first surgery, since before Jamie was born, when I could still hear in both ears, so we’re talking over 22 years. Sasha was telling me a story. We had started talking somehow about how people are living longer lives than they ever have before, and she said she had read a story about a woman who was 92 years old and “could still pee”. I heard this and thought that while this didn’t seem like all that much of an accomplishment to me, and I that should I reach the grand old age of 92 I hoped I would be a natural in this department, perhaps there are plenty of 92 year olds out there that aren’t able to boast this same accomplishment. Maybe there are many 92 years olds who are wearing adult diapers and aren’t in control of their bodily functions at this age. So, I said to Sasha “Wow, 92 years old and can still pee?” She started to laugh hysterically and tried to talk, but her words were unintelligible. I wasn’t sure why she was laughing, since I was sure I was just reiterating what she had said to me…but she was convulsed with laughter and could not talk. When she was finally able to pull herself together, she came around to my hearing side and told me what I was unable to hear the first time around. She said, “No, Heidi, she’s 92 years old and she competes. She’s just completed a marathon”. I thought to myself, “Ah, now that’s an accomplishment!” It’s hard for those reading this I suppose to understand how “can pee” and “competes” could sound the same, but to those that can hear “sort of” those things sound quite similar, and not only that, they sound that way a lot of the time.

On a different day I picked up my youngest daughter Rachel from school. We were in the car together. We got into one of our usual post-school conversations. She was telling me about her day, maybe she was complaining about somebody, some teacher, some class, something. I made a comment about one of her complaints. I wish I could remember the specificity of this individual situation, but I can’t. At the moment, on that particular day, when the particular conversation occurred, it held the heft of its particular importance…afterward (sometimes, shortly afterward) it seems to fade away. So looking back on the situation, I’m straining to remember the particulars, but for this story the particulars are not so crucial anyway. So Rachel tells me something and I comment. She comments back, “Oh you’re an old fart”. First, I’m quite surprised to hear Rachel use the word “fart”. I’m just surprised that Rachel knows the word “fart”. It’s not a word I recall her ever using, but perhaps it’s just entered her vocabulary. Could that be? Second “since when did Rachel start to use this saying?” Is this a part of some retro High School lingo? I answer back, “You may not like what I said to you, but why did you just call me an old fart?” She started to laugh, and of course as is usually the case in these wrong-hearing situations, I didn’t understand why she was laughing. It took her a few moments, and then after getting over hearing me say the word “fart”, which she found funny I suppose, she said “I didn’t say were an old fart, I said you’re no fun.” The most interesting thing to me about this mishearingness, is that while I’ve heard things that sounded more similar to each other, the sentiment of these two comments is very similar “you’re an old fart” and “you’re no fun”. I could have after all have misheard her say “you’re not smart”, or “do you carry a gun?”

On a different day, I had gotten together with my friend Leslie at my local diner. We ate, we talked, the bill came, it was time to pay; we divided the bill…easier that way. She looked at me while holding a twenty-dollar bill and said, “Do you have gas?” We’ve been friends for almost twenty-five years, there’s almost nothing we wouldn’t feel free talking about together. We’ve gone through our pregnancies together, she was there after both my surgeries, we’ve been through a lot together, and so “if she wanted to know if I had gas”, I wasn’t all that put off by the question. I wondered why she cared if I had gas, but I wasn’t put off by her asking if I had it. It did make we wonder if she had gas. So, I said, “No, I don’t have gas, why do you care? Do you have gas?” She said, “No, not gas, I want to know if you have cash, all I have is this twenty-dollar bill. I want to know if you have any change, and I don’t have gas” So then of course we laughed at my usual lack of hearing, I gave her a couple of bucks. I was glad to hear she didn’t have gas. This is not the first funny non-hearing story between she and I-it won’t be the last.

Then there was this story that happened only recently. It was this last event that compelled me to finally write about how I hear things differently than what is actually said. I thought as funny or embarrassing as some of these “non hearing moments” may be, they may never top this most recent one. I was walking my dog Max, a feat in itself. Max is strong…a puller. He has definite opinions about the people he likes, and doesn’t like, but he’s just a bit older than two, and he’s improving every day, but still…he’s Max. So we were out, and we passed this house up the block from our house on our way home and Max was looking for the dog that lives in this house. The dog that lives in this house is an old Jack Russell Terrier. For those that don’t know, a Jack Russell terrier in their prime can also be quite opinionated, and a force to be reckoned with-they’re small dogs, very bright, and don’t seem to care or know that they’re small. This particular Jack Russell is almost 16 years old. The owner and I have talked before about her dog and how he’s not what he used to be, and how she takes him outside to “pee” now (there’s that word again), and he just stands there, but he’s still hanging in there. So on this particular day when Max and I were passing the house, her dog was not out, but the owner was sitting in a chair outside. Max was sniffing around for the dog and I said to the owner “my dog is looking for your dog”, and she said with what sounded like a bit of a sad low tone to her voice, “Oh, he just died”. I was horrified to hear this; I had just seen her dog and he seemed like he was doing okay. He was by no means fit as a fiddle, but he was oozing down the road, if not easing down the road, and he seemed to be happy enough. I said to her with genuine sadness “Oh, I’m so sorry to hear that!” and she quickly said with more of an upbeat almost corrective tone, “oh, no, no, he’s fine, he’s just inside”. I of course felt embarrassed and immediately apologized and told her that, “I don’t hear very well, that I misunderstood what she had said, and that I was glad to know that he was still with us”. She said, “No, he’s still hanging in there”. As Max and I walked back home I was a mix between sadness, awkwardness and laughter about myself and how I hear. I felt sad for the owner of the Jack Russell Terrier. I hoped that I didn’t fill her with sorrowful thoughts about her aging friend. I also couldn’t help thinking a bit about the embarrassment of seeing her the next time we ran into each other on the street. This is the way of things when you have hearing in only one ear. But even considering all of these times I have heard things wrong, I always know that having hearing in one ear is still better than having no hearing at all. It’s all in how you choose to look at things.

What a difference a day makes

One day and 2.5 miles down the road from my school experience from yesterday, I sat down to talk about Walking Miles 4 Brain Matters with another school. This I’m happy to say was a whole different story from my initial meeting with the school the day before-the manner, the interest, the respect were all much more compassionate and upbeat. I can describe it only by saying that I was made to feel as though I was a person who was trying to bring awareness to an important cause, instead of a traveling salesman pushing the latest gizmo.

After this positive reaction, I traveled back up the road to talk to someone else at the same school I had had my not so good experience at yesterday. This time I spoke to someone else-this person explained to me that while things were busy at the school, that it was a good thing that I was getting in touch with the school now because of how much planning things take. I did mention to my most “recent person”, that I had spoken to someone at the school that had suggested that I’d be best to contact the school at the beginning of September about my walk on October 1st. My “recent person” went on to say that there are many fundraising events at the school and that waiting until the beginning of September would probably be too long to wait. “Now we’re making sense”, I thought to myself. This person I met with was polite and took the time to listen to what I had to say about Walking Miles 4 Brain Matters. I told him the importance that this particular school had for me, I also explained to him that Brain Matters was prepared to contribute whatever effort was necessary to help make this event come true. He said, “I will look into this further, please call me back in two weeks”. And so I will.

I will call everyone back as I continue to call others for the first time, and visiting others. What have I learned? For schools it seems to be better if you can meet people in person, than on the phone. We’ve sent many, many emails out, and made many phone calls, but nothing has received quicker more immediate feedback than an in-person meeting. We have spent a lot of time trying to find the correct person to talk to; the person you’re talking to may no be the one making the final decision even though they may sound like it-it took a while to figure this out. The lesson continues and so does the road.

Come together, right now!

This has been quite the couple of months. I’ve been building. I’ve been walking. I’ve been working with friends to create a website…to reach out to schools to hopefully get those schools and the students engaged in the cause and the walk…collaborating to design a logo and a business card and thinking about a slogan. I’ve been getting in touch with whomever I’m supposed to get in touch with to fill out the paperwork I’m supposed to fill out. I’m contacting the people, the corporations, the sponsors, the talent, anyone I can to raise awareness for a cause that needs awareness. I’ve had some amazing help through friends and family, and then there has been the other side that has also been equally educational but not as positive…I’ll call it the Darkside. The side that is strangely familiar. The side that reminds me of when after I had my second surgery and was told that my best option was a third surgery, maybe a fourth surgery, but there was no guarantee that any of these surgeries would cure or even help me, and that it was important that I know that with each surgery there was a risk I could actually be weaker and more impaired. I remember asking if there was anything else that may be out there in the world that might be useful or effective for me. Anything? My doctor said that he was sad to say it, but “No, there wasn’t”. This didn’t seem like an option. Moving on…from him seemed like the best option. “I’m not taking NO for an answer seemed like the only option”. I left that negative optionless room on that day that my surgeon and I had that very bubble-bursting conversation (at least that’s how I saw it), and started to research for another option…any other option other than the one I was being given. After much looking, and much help from many of the same people who are helping me put together the Walking Miles 4 Brain Matters event I’m planning now, we found what I felt was a better choice for me. This is when we found Proton Radiation Therapy. My most recent math problem is slightly different, but the arithmetic is the same. As I’m trying to help raise awareness of brain tumors, I’ve come up against one of the same problems I was dealing with at the time I was dealing with my own brain tumor. I recently was calling to get a school on-board for Walking Miles 4 Brain Matters. The call was to one of the first schools we’re planning to stop at in October. The person I spoke to at this one particular school gave me two reasons why they would not be able to commit to participating to our event. Reason number one in the room of “sorry we can’t help you now” was that it was too soon to think about an event that was in October, but that if I called back after the first week in September, just after school started (only three weeks from the day I was to begin walking) that maybe they could help me out at that time. This was not bubbling with enthusiasm nor helpfulness. It also didn’t make sense. I spent many years at school, my daughters went to school, are still in school, generally everything that is done at schools is done way in advance. The rest of this conversation was deflating for additional reasons which I won’t go into, but I suppose the most deflating was the unbelievable lack of support considering that Brain Matters (our non-profit), is willing to do so much of the work, and really only needs the school onboard for promoting the walk within the school. We would supply attention-drawing flyers to the students, the website includes the permission slips and the registration forms, we would do the advertising on the outside etc. Reason number two in the world of “sorry, we can’t help you now”, was that as I was talking to this school official they told me they couldn’t help me because they were too busy promoting Relay for Life at the moment, and could not divert their attention or the student’s attention from that project, to get them involved in anything else. I am familiar with Relay for Life and believe it’s a great cause-it helps raise money for cancer and incorporates cancer survivors into that fundraising-this by all means is a cousin of Brain Matters. I was not looking to get in the way of this cause. My own kids have participated in this cause in the past, and I was fairly sure that the event didn’t take place until the end of June. But time can fly by when you’re having fun, so I asked the person I was talking to when the event was supposed to take place. He told me it was happening at the end of June. He also told me the school had been doing the event for 15 years, which made me think that while I do know Relay for Life does take planning, so much of it at this point has been put into place because it has been going on for that length of time. I said, “today is April 26th (the day we were actually speaking to each other), that’s almost two months away from now, and you can’t talk to me because you feel too busy with regard to an event that is two months away, that makes me concerned about how much you will be able to do when we’re talking to each other again at the beginning of September with only three weeks until the beginning of my walking event. I realize my walk is in October, but all I’m looking for is to know that the school is onboard, and that we can work together to make this happen…waiting until the kids come back at the beginning of September to decide whether or not you will want to be involved, I believe will be too late to get the message out with only three weeks preparation before a decision is made.” I was surprised by this conversation for a few reasons, some obvious, some less than obvious. Before my friends and I thought of the idea of stopping at schools along the route between my hometown and the last town in Boston, we had put out a few “feelers” to schools about our idea. The schools we had spoken to thought the idea was terrific and were eager to help in any way they could. They thought that being able to reach out to kids and make them aware of brain tumors was great, and having a long walking event that stopped at schools would be a good way to bring publicity to the cause. It was because of this eagerness that Walking Miles 4 Brain Matters was created. We believed that their eagerness would be matched by other schools we contacted, and if not eagerness, then at least politeness and if not that, then good will. I find myself wondering if the reason for the difference in enthusiasm is because the schools we talked to before we “molded” the event were private schools, not public schools? I went to public schools my whole life, I participated in UNICEF, participated in other charitable fundraisers, why was this particular school, this particular public school so…for lack of a better word “non-participatory”? Well, when I hung up after that call I thought to myself, “I’m not taking NO for an answer”, not yet…there must be more options, more people to talk to”. It’s possible that if I had accepted the opinion of my doctor back a few years ago, I wouldn’t be here today. I wouldn’t be here complaining about what I don’t feel is not quite right. It may just be that not every school I call this year will be the right school…not for this year anyway. Many of the schools we have called have already shown a significantly different reception than this one school. This specific school I’ve been talking about happens to be particularly meaningful to me. If it doesn’t work out, then I will have to accept it, but certainly not without coming through the windows, if they’re closing the doors. We’ve got to come together right now. Don’t you think?

Friend of a Friend

A couple of weeks ago I was sick with the flu, I should have gotten the vaccine, but in the past I’ve gotten the vaccine and actually ended up getting the flu anyway. I made an Executive Decision and decided not to have the vaccine this year…wrong decision. Next year I will get the vaccine…next year I’ll be one of the first people to get it. This flu took me down to the mat. First, Rachel got it-this is almost always the case; Rachel goes to High School and is a sponge for maladies, and then the worst part about this for the rest of the family is that she’s a donor-the gifter if you will, of maladies. A week later Rachel was much better…a week later Rachel’s illness had become mine; mine lasted for a month. What was first a flu-became a sinus infection. In the middle of that, Jon also was gifted the malady; he said he hadn’t remembered being that sick since Jr. High School. It was bad, and ironically it was Rachel’s Winter Recess. Jon had taken nine days off…not exactly the vacation we had imagined. At my peak of fluness, a friend of mine called and asked if I would talk to a friend of hers-she told me that her friend’s husband had recently been diagnosed with a glioblastoma. The relativity of life! Here I thought I was feeling horrible. This is a very difficult type of tumor to treat. I wasn’t sure what I would be able to say or do for my friend’s friend, I felt like crap, but I was sure she felt worse, and if it would make her feel better just being able to talk to someone who knew what it felt like to be a person, or to be with a person that had a brain tumor, of course I would listen and try and help. We talked. I don’t know if anything I said was useful. I was frustrated that I wasn’t able to do more. I was also frustrated because during these sick few weeks I had lost valuable Brain Matters time. Time I could/should be using to be able to set up my walk, and to meet with people I had been wanting to meet with…this conversation was just another indication of how much more needed to be done with regard to brain tumor awareness. No tumor patient is exactly like another one…but I lived close enough to this friend of friend’s neighborhood that I knew the neighborhood well enough, and all I could do was pay a visit. Why isn’t there more in the neighborhood?

Then two weeks after that conversation I met with the Director of the Brain Tumor Foundation and I learned something very interesting…the Foundation is making a tremendous push for early detection. I think this is a fantastic idea!

The earlier you find out if you have a tumor, the better the chances for curing that tumor. The smaller a brain tumor is, the easier it is to operate on, with all likelihood the less impactful it will become on very important nerves, the brain itself, etc. Overall, it will just be easier to treat. Without a doubt the people I’ve spoken to through this blog, or because of what I’m about to do, or have been through in my past were surprised to find out that they had a tumor…myself included. You usually don’t know you have a brain tumor until something major happens. One day you might have a seizure, or you don’t remember something very basic like your own name, or you start to hear ringing or buzzing in your ears, or you start seeing double. If you were to have an MRI as a part of regular check-up, the way we do mammograms, this would save lives. I know it would. Twenty years ago, when I was originally diagnosed, the ability, ease and technology to have these tests on a frequent basis did not exist, that is not the case today.
This is a step.
This is action.
To learn more go to www.braintumorfoundation.org

On A Mission...

A Mission is a responsibility, a duty, a commitment, a life’s work, an undertaking, a journey, an intention, a venture, a purpose, a calling, a pledge

A Mission Statement is supposed to be an official statement of the aims and objectives of a business, but it’s so much more.

I’ve written several mission statements for companies I’ve started, companies I’ve thought of starting, projects I’ve started, or thought of starting-it’s what I’ve had to do, it was a part of what was considered necessary-a part of the process, I never really thought about what a Mission Statement was, just what I needed it to be, what I needed it to accomplish-it needed to be a sales tool and that’s how it was written. It wasn’t until I was writing the Mission Statement for my Non-Profit Corporation, Brain Matters that I realized for the first time the real meaning of that word “mission”. There has never been a Mission Statement that I’ve written that’s been more important to me than the one that I’ve written for this company-it’s because this company is a "mission" for me. It feels like one of the most important things I’ve ever tried to do in my life. This is the Brain Matters Mission Statement…this is my mission, my commitment, my pledge.

Brain Matters has been created to bring awareness to the public about brain tumors; this is a personal mission to me. I was diagnosed with a brain tumor 20 years ago; it turned out to be a cancerous. Since then I’ve had two brain surgeries, and two rounds of radiation. There are advances made in medicine every day. As a patient I have learned that one of the most important things may be that while you’re greatest wish is to be cured, it may be just as important to stay alive long to take advantage of the medical advances that happen in the future until you can be cured. There are many people that don’t get that chance. I was given that opportunity.

As long as I’m physically able, I feel a responsibility to do what I can for those that aren’t as able as I am right now, and to try and do what I can for the cause. It’s for that reason that I intend to be “Walking Miles 4 Brain Matters”. I will walk 250 miles from my house in Port Washington, NY to Massachusetts General Hospital in Boston this October, taking basically the same route that my husband and I took every week when I went for proton radiation therapy at the Mass General Proton Center two years ago. I will walk through the neighborhoods and towns that I passed along the way, reaching out to the people in those towns. The kids at the schools along the route will walk with me and help raise funds and awareness for the Brain Matters cause. Brain Matters is dedicated to making the public aware of brain tumors-not just cancerous tumors, but non-cancerous tumors as well, which can be just as life threatening. We will create a documentary film of this entire walk.

Part of the funds raised by Brain Matters will be donated to Massachusetts General Hospital’s Proton Center. The Proton Center is one of the few Proton Centers in the country; without the center I probably wouldn’t be able to make this walk, perhaps I wouldn't be here today, nor might many other people who have been treated at the Center. Proton Radiation is a very important part of brain tumor therapy. We also intend to donate funds towards medical research for brain tumors. My hope as a patient is that when a person is diagnosed with a brain tumor and their doctor needs to tell them their diagnosis, it doesn’t sound like this… “I’m very sorry to have to tell you this, but you have a brain tumor. Brain tumors are very difficult to treat and we wish we had more options available to you at this time, we will try and do the best we can of course”. This walk and documentary is just the beginning, it’s Brain Matters hope that the walk will become a yearly event, from which many other things will happen.

As I said before, not many brain tumor patients get to live long enough to shine a light on a subject matter that is darker than it should be, and because I’m still here, I feel it’s important to do whatever I can do, to be one of those lights. To me it couldn’t be more personal.

It's Days Like This

There’s this way of assuming things, taking things for granted, that once you’ve learned that you can’t…you don’t…you won’t, not ever. This not ever taking things for granted is as they say “both a blessing and a curse”, it allows you to appreciate things in a way that you may never have been able to before, but you also are anxious and worried that you may not live long enough to see and do the things you want to be seeing and doing. So it’s with that in mind that I tell my next story…event really. It goes like this:

Jamie (my oldest daughter), who is now in her senior year at the University at Buffalo was recently cast as one of the leads in Neil Simon’s farce “Rumors”. First, it’s hard to believe Jamie is a senior in college. She just started college when I called her to let her know that I was going to have to have another brain surgery. My first brain surgery was when Jamie was a bit over a year old-she doesn’t remember much, if anything at all about that surgery. Anyway, back to our regularly scheduled story.

The three and half years since Jamie started college have flown by in one way, and crept by in another. So much has happened in these years, and yet there have been times we have all wished for certain of those events to move by faster than others. The family has moved, we’ve had pets that have died, more doctors appointments than we can count…these things some how have gone by slowly, but Jamie’s time in college…to us anyway, has gone by quickly.

Jamie has always loved the stage; she loves everything about it. Before she was performing on a stage, she was performing at home. When she was got a bit older, she went to USDAN, a summer theater camp where she met and still stays in contact with other theater loving kids-who have and will go on to pursue careers in theater. I don’t think I can remember happier times for Jamie than the ones when she’s been onstage. Among other roles, she was an excellent Peter Pan at her Junior High School-in fact they still talk about it at that school, and it’s been probably eight years since she’s played that role. This year she was cast as Chris Gorman in “Rumors”. Jon and I booked our flights, our hotel room, Max’s Pet Motel stay. We were in snowy Buffalo a total of 24 hours. Jamie said something, that rang poignantly to me; she said that was probably going to pursue a career in the world of theater, but her intent was not to pursue a career as an actor (that wasn’t what rang poignantly). She said, “you know, I was thinking…this may be my last time on stage!” My feeling is that if she loves it, she will find a way to do it. What’s the saying? Where there’s a will, there’s a way? Even if she doesn’t do it professionally, she can do it locally, or regionally…who knows…passion is an extraordinary thing. I know this first handedly. But still it did leave me with a funny feeling; it felt like sort of an ending, which I guess is somewhat of the same feeling she was feeling in herself. All the more reason I was glad to have been able to make the trip.

The organizing and traveling for this “blink of an eye experience” was so totally worth it. Jamie was magnificent. She looked terrific, she was funny, captivating, of course I missed the fact that she didn’t sing, because I love when she sings, but I was so glad to be able to be there. As I was watching her on stage all I could think was that over these last few recent years I wasn’t sure where I was going to be, or how I was going to be…but here I was…watching her. I will remember this always. I love you Jamie-you’re terrific, and will be terrific at whatever you choose to do.

25 Years

I haven’t written in a few weeks, so many things…so little time in which to do them. I’ve been preparing for the walk for Brain Matters-this means many phone calls, paperwork, meetings, and exercising-all great, but definitely time consuming. Thank you BTW to all of you who have been working with me; I couldn’t be doing it without you. I can’t help thinking how it certainly beats last year when I was deep in the middle of moving from one house to another…so glad I’m not doing that this year. Also, on November 16th, Jon and I celebrated our 25th Wedding Anniversary, in some ways this went by quickly. What am I nuts? No way did this go by quickly. In some ways 25 years feels like many more years than that-not sure how many more…but more. I was going through some old files a few days ago, and came across something I had written a couple years back. I had written it because so much has happened over the years, that I didn’t want to forget it, I also think of one day writing a book about my experiences and want to make sure I’m able to have these things written down so I don’t forget them. Given this last year and my most recent medical problem and how it effected my memory, I’m glad that I did that. I thought it would be interesting considering the 25th Anniversary Triumph, that I would share a few of the other events that have happened to Jon and I in the last 25 years besides of course the ones that I’ve written about here on the blog, and the birth of our two fantastic kids. It hasn’t been easy to be married this 25 years, some amazing times, some not so amazing, some times I know we both could have done without for obvious reasons, some for not as obvious reasons, but we’re still standing, and we’re still here. I offer these quotes in celebration:

"The secret of a happy marriage remains a secret"
-Henny Youngman

"A successful marriage requires falling in love many times, always with the same person."
-Mignon McLaughlin

"A wedding anniversary is the celebration of love, trust, partnership, tolerance and tenacity. The order varies for any given year."
-Paul Sweeney

And now for some of those other events that have taken place in the last 25 years. You could probably make this stuff up, but knowing that I didn’t is what makes it all that more unbelievable. Does that make sense?

After our apartment was demolished in 1989 because of the steam-pipe explosion, a crew of workers came into the apartment to clean up the asbestos that littered it. We could not stay in the apartment for 6 months during this cleaning. These workers subsequently stole most of what we were forced to leave. My wedding and engagement ring were left in the apartment (in those days I didn’t wear them when I worked and the apartment was closed off without warning). Six months later after the asbestos clean up was finished and we could re-enter our apartment, we couldn’t find the rings anywhere, we assumed like so many other things, that they too had been stolen. Five years later I was unpacking some things and found a box I hadn’t seen before…my rings were inside. Some honest person must have hidden them there for safekeeping. Amazing!

When I was about 8 months pregnant with Rachel; my credit card company called to tell me that there had been $8000 worth of charges on my card. Did I make them? No! Two weeks later a woman from a local Coach store called to thank me for my $500 purchase. Only one problem, I didn’t make the purchase. Suspecting it may have been our babysitter who made the purchase (not many people had access to my things), I brought a picture of her to the store. Busted! We filed a police report. The police arrested her. At this same time I realized that my wedding ring and engagement ring (the ones that I found in the previous paragraph) were missing; my fingers were swollen and the rings didn’t fit, so I kept them in a drawer. When I couldn’t find them I assumed I had misplaced them. I mentioned it to the police. When they asked our babysitter about the rings, she admitted she had pawned them. The shop still had the rings, and I got them back…again. Magical rings!

When Rachel was 5 and Jamie was 12, our live-in babysitter for five years, named Judith, but Rachel called her Judah, started to feel sick. Two weeks later and still feeling ill, she went to the hospital Emergency Room. She was diagnosed with 4th Stage stomach cancer and died four weeks later. Afterward we discovered a diary that showed that she had paid thousands of dollars of her salary over the preceding year to a woman in Las Vegas who claimed to have a “special” relationship with God and could free her of her ills. I really wish she had said something to us sooner.

A babysitter that Jon and I hired before we hired Judah, worked for us for a month, asked to borrow on her future salary and then afterward said she had a tragedy at home in Barbados; she needed to leave, but she would be back in a month. A month later she hadn’t yet returned, but said she still intended to do so. Around that same time we received a phone bill with $800 worth of charges to 1-800-Psychic. We wondered what sort of psychic advice she was getting before she left us? She never returned. We’ll never not have a 1-800 block on our phone line. Later I found out that this kind of storytelling is not so rare.

And that’s just some of the stories in 25 years…so many more. That’s Life. Here’s to Living!

Don’t Put Off To Tomorrow, What You Can Do Today!

I almost can’t help myself, I’ve been living this way for so long; funny thing is that until only recently I thought everyone lived this way. I was talking to a friend of mine about all the things I’ve been doing…this is a long list of things, partially because of habit (I’ve always been a person who feels best when I’m doing a lot of things), and partially because I’m a person who has NOT always been able to do the things I want to do when I want to do them…not everyone gets to know that experience. I admit it’s overwhelming at times, even brings me to tears, because I don’t know at what point I may not have the energy I need to do what I want to do, and that can be exhausting. It’s not that I don’t think if I were to put things off until tomorrow I wouldn’t be here to do them, it’s just that I do know that it’s certainly a possibility.

My friend said to me, as any friend would say to their friend in tears “why don’t you relax, take it easy, you can do it later, tomorrow, the next day?” This is something that someone like myself doesn’t ever really think of because my rest(s) have come when I’m not the one choosing them-to me they seem to come when my doctors have chosen them- they have come out of necessity. I feel this want-this need even, to take supreme advantage of the time that I CAN be a doer, even if it can sometimes be a bit of struggle to do what I can physically do-because I know all too well what it feels like not to be able to do what you’d like to do when you’d like to do it. This knowledge is…what do they say “both a blessing and a curse”. However, it’s my feeling that this bit of knowledge isn’t such a bad thing for everyone to keep in mind.

So as you’re thinking of that, think of some of these things, think about the people you haven’t reached out to, that you want to-but haven’t, the art class you may want to take, but don’t think you have time to take, the old storage container that needs to be cleared out because you’re sure that the something you’ve needed or wanted to have is inside it, but you haven’t had the time to look in it…for 3 years, the promises you’ve made, but haven’t kept, the calls you need to make. The cavity you need to fill before it becomes a root canal, the doctor’s appointment you’ve been meaning to make. Think about who you’ve been meaning to thank. Who do you want to say I love you to? There are always going to be things that I don’t get to, but I try. I have a list…and of course there are priorities, there are only so many hours in a day, I know that, but I remember the things I can’t get to because I write them down on the list. If you have to put off to tomorrow, what you can’t do today…write it down on your list so you can remember those things tomorrow. Today is a good day to start.

I'm Walking, Yes Indeed I'm Walking

So next October 1st, it’s my hope should all things go right (this is no small task), that it’ll be the first day I will be on the road to Boston. My plan is to walk 10 miles a day, the trip is about 300 miles long…it’s shorter if I’m driving, the trip is longer because I’ll be going through individual neighborhoods. When I drove the trip every week in 2008 for radiation treatment, it was about 218 miles-but that trip was very direct. It’s my hope that by taking the long way, and going through neighborhoods I’ll be able to be more visible and in touch with people and communities, giving me the greater ability to make them aware of Brain Matters…again we’re talking hopes…

It’s funny to think that on the first day I will walk 10 miles, and at the end of that day I will only be 10 miles away from my house-I’ll probably just take a car back and come home…may even do this the first few days, until it just doesn’t make sense to do so…but I’m just thinking out loud, everything is still so much in the planning stage…the hoping stage.

As of today, it’s October 11th, I’m walking 4 miles a day a few times a week…I’m in the building stage, this is the most amount of exercise I’ve had in a while. When I’m walking, I’m imagining myself a year from now, what it will be like; I’m also dreaming about all that I want to make happen between now and then. As of now, I walk when it’s raining, because I know I will have to walk when it’s raining. I walk when it’s cold because I know I will have to walk when it’s cold. When I’m walking, I notice the changing of the leaves and I think, “that will look so good on film” (because a group of my friends and I plan on filming this all for a documentary), and it will be so beautiful to see this all as I walk from here to New England. I think to myself should everything go according to plan I will arrive in Boston just around Halloween next year, but I’m purposely choosing not to arrive on that day because that could be a crazy day to arrive; I’m choosing instead to arrive a day or even a couple days later, as long as it’s before the clocks get moved forward on November 6th, and as long as it’s on a weekday.

I’m walking, I’m dreaming, I’m imagining, I’m hoping…yes indeed I’m walking.

Before You Can Walk, You Have to Ride…Or It’s Off to Musa’s Slaughterhouse We Go

It’s still my intention to walk the 227 plus miles from my house to Mass General Hospital this June; that is of course once I create my Non Profit Organization (which I find out takes time…lots of time), fill out paperwork to attract and attach various sponsors, contact sponsors and wait for them to call me back (which I find out, takes time…lots of time), train to walk long distances in all kinds of weather, and drive the walk to see what neighborhoods and terrain I’ll be going through. Will I need a weapon? Only kidding. How many hills will there be? How steep are they? Will I need rock climbing shoes? Only kidding.

So on September 26th (quite a while ago now, I was hoping to blog sooner, but these have been busy times), Rachel…my 13 year-old daughter, also my navigator, as well as my cameraperson, set out to make the ride of the walk. We had to go on all the side roads…no highways-that’s not how the Google Walking Map is laid out. We had to go over only the bridges that you can walk on; that would not be the Throgs Neck or the Whitestone Bridge…this is a story for another time. After driving 20 miles we had made it just over the 59th Street Bridge. This took us about an hour and 15 minutes…not so unusual really…not so usual yet. It takes me about this long even if I was to take the highway, and not the side roads to get to the city. Once over the bridge, we have to traverse ourselves through traffic, traffic lights, people crossing…(just because they feel like it), as well as the directions themselves. My navigator was doing an excellent job. We drove about 10 miles to get to upper Manhattan or Harlem, and from here we traverse uptown to the Bronx…the South Bronx. I think that until this day, while I’ve lived in New York most of my life, I thought that the Bronx was the Bronx Zoo-it’s not…not even close. Rachel and I drove about 1 mile, when we came to another light. This part of the Bronx was filled with many burned out warehouse type buildings, and boarded up apartments. At the light, we looked over to our right, and noticed a warehouse building with a wide open space about 20 feet long and 8 feet high, there was wire gating across the lower part of the opening…and inside some very cute sheep, goats, chickens…very nice. Rachel turned to me and said “this is a strange place for a petting zoo!” While we waited for the light to change we scanned the front of the building to see more about what we were gazing upon, and then we noticed this: “Musa’s Slaughterhouse-You Pick ‘Em, we Kill ‘Em!”. Wow, this is some interesting neighborhood. Rachel was sure that it must be illegal and that we needed to contact the police; I told her that I was equally sure that they knew about it, and that’s it mustn’t be illegal. She then said “you’re going to be walking here?” I told her that I probably would, but that I wouldn’t be alone when I walk; after I said that, I thought “I’m going to be walking here?” From Musa’s it took 20 more miles before we were out of the Bronx, (can’t say the scenery improved much), until we hit Pelham in Westchester. Twenty miles though, that may be the limit to how much I will be able to walk in a single day. What if I can’t walk that far on that day? I would like to stay overnight at a place relatively close to where I stop walking for the day. Not too many places along the way to stay here. Definitely stuff to think about.

We drove 80 miles to Bridgeport, CT and it took us 5 hours, this was only one third of the total trip…we decided to hit the open road, to make up some time. I was fairly confident that the next 100 miles of terrain along the Boston Post Road would be mostly the same. We drove about two hours before we got off near Hopkinton, MA (about 28 miles from Boston), I wanted to see the hill that is often referred to during the Boston Marathon as “heartbreak hill”. How steep was this hill? It definitely was steep, but not as big an issue for a walker as it would be for a runner…but of course I was driving, not walking…not yet anyway. Again, this will be something to think about. All tolled it took Rachel and I ten hours to drive from our house on Long Island to what will be my final destination in June-Massachusetts General Hospital. We were exhausted, Rachel was in tears; I could have used a drink. We did locate a Dairy Queen at the tail end of the trip just outside of Boston…it lifted us up a bit. There aren’t any Dairy Queens anywhere closer than two hours from where we live, so this was a treat. This trip would usually take 3 ½ hours to drive, and will probably take me, depending on how many miles I walk a day, and what my ultimate route will be, somewhere around 16 days, or so. Again, there are definitely things to think about.

The Road Back

August 11th was one year from the last day I had radiation. Last year was the year I was sick, this year has been the year of recovery, and this next year is the year I’m moving forward. I can feel it.

Last year at this time I could hardly walk the two blocks to the hospital for treatment, today I can walk two miles, next year (June of 2010), I’m planning to walk 227 miles from my house to Mass General Hospital to raise money and awareness for Brain and Skull Base Tumor Research.

Some information about Brain Tumors...they are relatively uncommon, especially when they are compared with lung cancer, breast cancer, and prostate cancer. These “big three” cancers are responsible for 44% of all cancers diagnosed in the United States. Brain tumors constitute less than 2% of the total number of cancers diagnosed. My particular type of tumor, a chondrosarcoma (is a cancerous tumor, and difficult to treat-I’ve been quite fortunate). Because of the effective screening for breast and prostate cancer, these diseases are often diagnosed at earlier stages, and less than 20% of the patients die of their disease. In contrast, 77% of cancerous brain tumor patients will die of their tumor or complications related to their tumor. Non-cancerous brain tumors can be just as deadly. There are no effective screening strategies for brain tumors, even “early” diagnosis of small, operable tumors may not be associated with favorable prognosis. Fundraising for brain tumors is very minimal, a few afflicted celebrities have come out to support the cause-but have not lived long enough to make much ground.

The decision to “Walk”, was spiritual…strangely guided. I’ve never felt this way before. I woke up about three weeks ago, feeling that this was something I had to do…not could do, not like to do, but had to do. I feel I’m on an important path, one with grand meaning and purpose…after these last two years where I could barely find the path…this is amazing.

Over the next ten months I’ll be reaching out to corporate and medical sponsors, as well as friends and family. I plan on filming the process of creating the “walk”, as well as the walk itself. I’ll be blogging about the project’s progress.

I’m a believer in “strength in numbers”. Last year I couldn’t even consider such an undertaking, but it’s because of everyone’s contributions that I will be able to make this come true. Thank you. Let the Walking Begin!

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?”

The beginning of The Beginning

Tomorrow Jon and I travel to Boston, a trip one or the other, or both of us has made countless numbers of times. We went to school in Boston, we have friends in Boston, we've been on vacation there...but no trip we've taken before will feel quite like the trip we take tomorrow. Tomorrow's trip is the beginning of the beginning. On Thursday I will be at Mass General Proton Therapy Center for various brain scans, and set-up for the June 23rd proton radiation start date. I am anxious, anticipatory (this may be the same), dare I even use the word excited, I am somewhat inarticulate at the moment, I am overwhelmed, I am so hopeful. I take with me on this trip the usual "trip items", but most importantly I take with me the enormous feeling of support and love of all my friends and family. Keep sending that positive energy.