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.

Some Words About Walking

From Here to There and Back, to There and Back, to Hell and Back, Back and Forth, to Here and Back Again, It’s a Rough Road, Long and Winding Road, Road to Nowhere, Let’s Get on the Road, Hit the Road, Road Warrior, Walk until you Drop, He Who Limps Is Still Walking, Walk This Way, Walking On Sunshine, No Walk in the Park, These Boots were Made For Walking, Walk On, Take a Walk on The Wild Side, We Must Walk Before We Run, One Step At a Time, Everywhere is Walking Distance if You Have the Time, Dream as If you’ll live forever, live as if you’ll die today

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!