Thursday, May 10, 2012

Casting a Wider Net

To those of you that have followed my blog, thank you and please continue to follow. To those of you that may have just stumbled upon my blog please know that it doesn't end here. I have for a while put most of my blogs here, and some on my website, I now have decided for a number of different reasons, the biggest one being to reach out to as many people who are interested in knowing my story, where it started, where it is now, and where it's post a larger portion of my blogs directly to the Brain Matters website at I will occasionally post here, but more often I will post there I also Tweet at brainmattersorg should anyone who's following or has stumbled onto this blog care to find me there. Thank you, Heidi

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.

Tuesday, March 20, 2012

Often Things Can Seem Like One Thing, But Turn Out to be Something Else...Something Better

Truly it can be in the way one chooses to look at things. I recently had the intention of participating in a local Brain Tumor Support Group, I instead sauntered in to the Aneurysm Support Group-I had no idea that this was the case until after I had spent a significant amount of time at the group. I arrived on time, but when I arrived the group was already seated and had already started talking…it was a group of about 30 people. I asked the woman standing near the front door when I arrived if this was the Brain Tumor Support Group? She said “yes”, but apparently she mustn’t have heard me. She pointed me in the direction of a seat in the back of the room. I said a casual “hello” to the group and I began to listen. I listened as these people of all ages, some with young kids, some with grown kids, some having experienced an aneurysm many years ago, some having just had one a few months before attending this group-they talked about their experiences. I listened and I wondered if anyone in this group had a brain tumor. I listened and I wondered if this could be a mixed group, or if this was only one kind of a group? I listened as they talked about their headaches and their seizures. I listened as some people talked about their speech inabilities, and how they had trouble walking. Some people spoke about how they had trouble remembering words, and how they felt sad about feeling dependent on their loved ones, and their frustration about not being able to drive following their surgeries. Many of them had the fear of getting another aneurysm in the future and what that would mean to them and their families if it were to happen. I think what many of these people were afraid of, but weren’t talking about, may have also been the fear of dying. Most of the people that were telling their personal stories had had surgery before their aneurysm had burst, but the fear of getting another aneurysm and or what additional side effects might be in their future were in most everyone’s thoughts. I listened to their stories and I found them to be so interesting…it’s as though we were neighbors on the same “medical block”.

I didn’t volunteer to talk about my story-I thought it would be disruptive…I was mostly sure at this point that there weren’t any brain tumor patients in the group. I was definitely feeling a bit out of place-I was similar, but not the same. Then the special guest of the evening got up to speak. The special guest was a Neurosurgeon- he specialized in Aneurysm Surgery; his name was Dr. Langer. Now, I was absolutely sure I was in the wrong support group. He began to speak. Their were a couple of things that struck me about this doctor: I found him to be engaging, interesting, insightful, and compassionate…okay, that’s way more than two things. Dr. Langer not only spoke about aneurysms and the brain in a way that was easy for a non-medical person to understand, but he also said something that I found to be quite profound. He told the group, (many of whom were apparently his patients already), who were asking him about their fears…fear of getting another aneurysm, their concerns about still having headaches, forgetfulness, speech problems, many of the things they had already mentioned earlier among themselves, many of the things that I myself deal with as well. He said this to the group “you know…what’s interesting, is that cancerous brain tumor patients often have these same symptoms, but they don’t live long enough to worry about them”. This was an amazing statement! It’s so true, I’m often sad about my deficits, but the fact is that most brain tumor patients don’t live long enough to worry about them. I wanted to raise my hand and say, “I’m that patient”, but I thought it would be too distracting. I couldn’t help wondering if this was why I was meant to saunter into the wrong room? Was it to hear this statement…this scale of relativity? I wanted to spread the “word”. I thought about the potential to help some of these patients. When it came time to leave, I mentioned to one of the nurses at the front door that I apparently was in the wrong Support Group, that I actually had been looking for the Brain Tumor Support Group, but that I found this group and Dr. Langer to be very interesting. She helped me find where she thought the other support group was supposed to be, but everyone there had left already. The Brain Tumor Support Group meets monthly, so I’ll try to go again next month. Who knows what I will learn there. When it came time to go home, after checking out the other meeting room, I “coincidentally” stepped into the elevator with a couple of the women at the Aneurysm Support Group. They both had told tearful stories about their worries for the future of their health. Their stories had really touched me. One woman was a young mother of two young children who had only recently had her surgery. The other woman had had her aneurysm surgery a year ago, but was still having a lot of trouble remembering words and places, and was experiencing really bad headaches-she was wondering how long it was going to continue. I wasn’t sure if I should introduce myself, but I was feeling quite energized by the meeting. I decided to talk. I said to them, “Hi, I just came from the same support group you were both at, and I heard the both of you tell your stories. I didn’t realize until after I had been in the group for a while, that I actually had stepped into the wrong meeting. I’m a brain tumor patient and my intention was to go to the Brain Tumor Support Group, it was my first time here and I wasn’t sure at first if I was in the right place or not, I thought maybe it was a mixed group at first-once I was sure it was just for aneurysm patients I didn’t want to disrupt the group by walking out. I wanted to tell you both that while I feel many things we’ve been through are different-I feel that there are definitely quite a few things that are the same, and I think I understand a lot of your fears and anxieties. I haven’t had an aneurysm, but I’ve been living with a brain tumor for over twenty years, I’ve had two surgeries, and two courses of radiation. I’ve had many of the same health issues that you’re both dealing with and some different ones…the forgetfulness at times, headaches, my tongue is paralyzed on one side, I’m deaf in one ear, I have trouble swallowing, one of my vocal chords is paralyzed, but I’m still here. I’m still talking. I still hear you when you speak. In these twenty plus years I’ve seen my two kids go from small to not as small. I work. I’m still living. I don’t know if that helps you, but I thought I would mention it just in case it might”. They both said to me “Wow, thank you so much, you would never know you had all those physical things, thank you so much for telling us that”. We said goodbye to each other, and I said to myself “wow, this has been quite an evening, I can’t believe I would have experienced anything more meaningful at the meeting I was intending to go to”.

I’m glad I stumbled into that meeting…these things like so many things, don’t seem to happen by accident. This support group supported me by making me feel that all that I still deal with…isn’t a curse, it’s a gift…I’m still here in the world… getting to deal with myself, while there are others that I’ve met along the way who are no longer in the world.

Dr. Langer’s statement about brain tumor patients generally not being able to live long enough to worry about their symptoms, just reaffirms the need to do all we can do to bring attention to the need for more funding and research for brain tumors. Please donate. When I started my walk back in October of last year and filming that walk, I knew that would be the beginning…the first step. I’m now in the process of raising additional funds in order to continue filming; we want to film other survivors, other patients and their families, and to tell their stories. We want to enlighten people about what’s going on in the world of Brain Cancer Research, there are some amazing things happening. We hear about breast cancer, prostate cancer and other illnesses, we hear about them because people live long enough to talk about them. We don’t hear as much about Brain Cancer because we don’t generally live long enough to worry about our symptoms…or talk about the cause. We have to work together to make that happen!

Friday, March 9, 2012

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

Wednesday, January 18, 2012

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!