Is There Anyone Else Out There?

When I was first diagnosed with a brain tumor over 21 years ago, it wasn’t something I had heard a lot about. Generally, if you heard about someone else you knew being diagnosed with a brain tumor, it wasn’t something you heard much more about afterwards because that person wasn’t given much of a positive outcome, and didn’t live much beyond your hearing this dreadful news. As a patient, it was quite like this “we’re sorry to have to tell you this”, “we think you should get your affairs in order”…”my affairs, what do you mean my affairs?” You were offered surgery, chemotherapy, radiation, and after all of that, you were given the possibility of a few months, maybe a year. If you didn’t choose those options, you were given a few less months, maybe you would have a few less scars, a bit more cognition, and maintain a bit more of yourself, but you wouldn’t know if you didn’t try-so you tried. There have been improvements made, especially in surgery, and some cancerous tumors are more treatable now than others were then. Twenty one years ago, it was just the beginning of the MRI, it wasn’t as easy to scan a tumor, and you didn’t really know what kind of tumor you had until you had surgery to see if it was in fact cancerous, or the winner in this dastardly game…”benign”, which could still cause a great deal of damage, but there was a greater chance that this would be able to be removed entirely, and not grow back. The surgery to remove this could be bad…very bad, but the aftermath, would at least be…a life. Without going into my whole story because that has been quite told here in this blog, yet another thing that was different back then, and different for me, was that I felt like a stranger in my own world. I knew there was no one who understood many of the things that I felt, or had gone through. There were hospital support groups, but these groups were for people who were in the middle of treatment, they were not yet anointed as survivors. They hadn’t gotten to the point of worrying if they would live another year because they were just concerned if they would make it through their most recent round of chemo, or if they would make it to Christmas, or Thanksgiving, or their next birthday. They weren’t thinking if they would be hired to work, they weren’t even thinking of working; these people were just thinking if they could get from the hospital to their house without throwing up, and if they would ever be able to be well enough to think about working again. People like myself must have been out there, but where were they? I wished I could find them. I looked for them. I talked about my situation to my friends, and they listened, and they felt my pain, but depending on what age I was, depended on how much interest or patience my friends had for my thoughts and feelings at any given point in the timeline. I was old before my time. At thirty, not many friends had much time for my sadness. At fifty, more sad friends, had more time for my sadness-but even so, having lived alongside a cancerous brain tumor for twenty plus years brings some very individual thoughts. I’ve been out there talking and walking to make people aware of this cause and the need for more funding and research. I’ve met people who have been affected by it, but mostly I’ve told them my story, there hasn’t been the time or opportunity to exchange stories. I’ve heard stories, but not any survivor stories. Most of the stories I’ve heard have been from people who have been left behind. This is another very important side. This weekend I will be participating in ABC2 Race for Hope, I’ve had the chance to talk to other survivors prior to my boarding the train down to Washington, D.C. I wanted to talk to these survivors, mostly because I want to interview them for the documentary film that Brain Matters continues to create in connection to the walk I took in October. I want to hear other survivor stories. I want to know what they’ve gone through, what their backgrounds have been, their family lives, and what kind of tumors they’ve had to deal with, and the therapies they’ve endured. In all this time, not until last week had I had the chance to talk to other cancerous brain tumor survivors. I felt like Free Willy when they released him into the ocean to join other whales, or Elsa the Lion in Born Free when she was let loose to join other lions. It’s hard to explain, but I felt like I met my “people”. It was amazing. I hung up the phone each of the times I spoke to these survivors and cried. After all these years, I was not the only one out here feeling the things that I feel. I can’t wait to be at the Race on Sunday…there are supposed to be around 300 survivors-they’ve all lived a different number of years since being diagnosed, but I can’t wait to meet more people who have lived through a lot of what I have lived through. I think a couple of other things: without the Internet, these kind of connections would never be possible, these 300 people are coming from many different states. It takes a lot of states to collect 300 brain cancer survivors. Last I think…just that…there will be over 12,000 participants in the Race for Hope; they’ll consist of supporters, family members of people who have died, and only around 300 survivors. Yes, there are other survivors out there, this isn’t everyone, but statistically the difference between those that are here, and those that aren’t, is extraordinary. There needs to be more research and funding for this cause. There need to be more on the “surviving” side. But still that having been said, I’m glad to have found new friends…other lions in the jungle.

The Strength of Words

I just had a moment, more than a moment, a weekend really, where I thought I had lost my blog. This blog is a compilation of stories and thoughts that I’ve written over the last four years…four very intense, life changing years. I have of course saved most of these stories-these words, but the thought of them no longer being out there for other people to read if they wanted to read them made me feel as though part of me had died. I realize that this may seem overly dramatic to some, but these stories and thoughts are “me”, they are not fictional, and the idea of them disappearing, was somehow as though I had disappeared. Also, the thought of having to re-up the entire blog, was another project that I would have to add to my ever increasing “To Do List”, and that too, made me feel like I might just disappear…or need to. There have been days lately, with all that I’m trying to do, that I just wish for one less thing…not one more. The blog had disappeared because it was attached to an old email address that after ten years I had needed to change. I thought that all the accounts, credit cards, and necessary contacts that required the new address…had the new address, but there’s always that one something that falls through the cracks, my blog was the something. Most fortunately, I was able to retrieve it. This retrieval was not easy. They don’t make these things easy. The internet giveth, and it taketh away. It is hard for instance to find an actual person to speak to, instead you are left emailing, which is frustrating and time consuming. These emails are signed with a name, it seems like a person has connected with you, but after enough back and forths, one comes to doubt whether that person actually exists. I was not certain for an entire day if I would be able to retrieve my lost information or just my lost “domain name”. This was a BAD DAY. But, in the end, after very little communication, limited help, and a decent lump of cash…the entire blog was retrieved…name and all. This was an AMAZING DAY. This was the giveth part of the taketh away. This story has been shortened for those that may be reading it, and are patience impaired about such “internet matters”, but I feel the core of it has been conveyed. This event made me think of a few things. It made me think of all that I’ve written and what it’s meant to me. It made me think a bit about how as much as I’ve felt at times (and I’ve mentioned this), that nothing can be better than being able to express your thoughts through words, I have to say that during this most recent “blog event”, where I was virtually forced to write while dealing with my “internet blog problem”, the thing I wanted to do more than anything was to speak my words…yell my words-not write them, and yet writing was all that I was being allowed to do. At times, it’s good to have a voice to one’s words, to be able to convey your supreme unhappiness, anger, and disappointment. This is something that can’t be expressed as fully or as well without…let’s face it, a little bit of volume. Perhaps we want what we want, when we want it. No news flash there, I guess. And lastly, I think of all those words and sayings I’ve read over the years, not just these four years, but the many years that I’ve been dealing with my health issues-the words that I’ve read that have inspired me and motivated me, the words that have helped me feel as though I wasn’t alone, or have given me the impetus to keep on, keepin’ on. These are some of those words:

“If opportunity doesn’t knock, build a door”
-Milton Berle

-Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
-Margaret Mead

"Never bend your head. Always hold it high. Look the world right in the eye."
-Helen Keller

"Strength does not come from physical capacity. It comes from an indomitable will."
-Mahatma Gandhi

"Greatness lies not in being strong, but in the right use of strength."
-Henry Ward Beecher

"He knows not his own strength that hath not met adversity."
-Ben Jonson

"There is no limit to what you can imagine. And with commitment, with effort, what you can imagine you can become. Put your mind to work for you. Believe that you can do it. The world will tell you that you can't. Yet, in your belief you'll find the strength, you'll find the ability, to do it anyway."
-Ralph Marston

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
-Eleanor Roosevelt

"Above all challenge yourself. You may well surprise yourself at what strengths you have, what you can accomplish."
-Cecile Springer

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”
-Mother Teresa

"No one has ever become poor by giving."
-Anne Frank

“It is not length of life, but depth of life.”
-Ralph Waldo Emerson

“Success comes from knowing that you did your best to become the best that you are capable of becoming”
-John Wooden

“Be the change that you wish to see in the world”
-Mahatma Gandhi

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!

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 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.

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!

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?”