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.

May They Always Come Back

Oh those rings! I’ve talked about my rings before. I have an engagement ring and a wedding band sitting on the finger these rings are supposed to be sitting on…that is they were sitting there last week, they occasionally leave and decide to sit elsewhere. For instance, in the past I had been concerned that because I was doing somewhat strenuous activities (like twenty years ago), that I might lose my rings, so I put them in a safe little box. I didn’t know that the safe little box would be in an unsafe apartment that would be the victim of a steam pipe explosion. After that explosion, I thought those rings were lost or maybe stolen-I couldn’t find them anywhere; Jon bought me new rings. Five years later when I was clearing out an old box from our old apartment (we didn’t have that much left from that apartment-most everything was contaminated with asbestos, or destroyed, or stolen), I went through this box, and there they were…the other rings…waiting to be found…just resting. Someone (not me), one of the workers that had been hired to clean the building, must have put the little box into this bigger box, not knowing what was inside the safe little box, or maybe they did, and decided to leave them there to rest.

Then a different time, when I was about 8 months pregnant with Rachel, I took off my rings (the newer ones), because my fingers were swollen, and put them in a jewelry box in my closet. I didn’t think much about it. A couple weeks later I looked for the rings but I couldn’t find them. I didn’t think much about it, there was so much going on at the time. Not only was I pregnant-but we were raising the roof on our house and building another floor. The construction was behind schedule-instead of the building being completed by the time Rachel was born, we were just starting to build right before Rachel was born. We were also dealing with the process of hiring a babysitter or nanny because I was only taking off 6 weeks before I went back to work. Jamie was 7 years old at the time, Jon wasn’t loving his job…so maybe, just maybe I hadn’t put those rings in the jewelry box-it was possible. I thought about it, but I wasn’t obsessing over it. Then I got a call from the local Coach store thanking me for my purchases for $500-only problem was I hadn’t made any purchases there. The next day I received a call from my credit card company informing me that I had made $8000 worth of purchases…wrong. Hmmmmmm…. I decided to take a ride to the Coach Store with a picture of my babysitter (she was the only other person besides myself that would have had access to my closet). When I got to the store I asked to see the woman who had called me. She came out from the back of the store, and of course she did not recognize me, but interestingly she recognized my daughter Jamie who had come along on this bit of Secret Agent business with me; she apparently had been with our babysitter on the day the Coach purchase in question had been made. Jamie wasn’t supposed to be driven anywhere without prior permission-guess our babysitter forgot. I showed her the picture of our babysitter, and she confirmed that the picture was definitely the “thankee” that she meant to be calling on the phone the day before my visit. I decided to go to the police the following day. The police couldn’t do anything about the Coach purchase because it was a credit card exchange and that was out of their jurisdiction. But what about those rings? I wasn’t sure if our babysitter might have gone into my jewelry box in her spare time-but it seemed considering the recent information, that it was possible. The police went to her house-she let them inside; they told me afterward that she had piles of bags and boxes-probably from all her shopping sprees. They asked her to accompany them to the Police Station; she answered some questions and was kind enough to produce a pawn slip for my missing rings. What do you know? The rings were missing! They were stolen! So the rings went on another trip and back they came. They could have been sold, but they weren’t. Our babysitter could have chosen to not produce that pawn slip, but she did.

So…last week, I noticed that my increasingly thinner fingers were not holding onto my rings the way I’d like them to, and I wondered if I should have them resized…that day was Wednesday. As I wondered this, I thought it will be easier to decrease the rings, than to increase them, and that while the band for my engagement ring is simple, my wedding band would require a bit of artistry should I need to increase its size after decreasing its size, and would it really be worth it to go through all that, when my fingers might very well expand in the near future. Much thinking was given to this matter. I specifically choose to wear the wedding band on top of the engagement ring because it’s smaller and that way it acts as a stop gap if you will, for the engagement ring, also thinking strictly monetarily, the engagement ring is more expensive than the wedding ring, and all and all, while I’d be sad…very sad if I were to lose them, I’d be much sadder if I were to lose the engagement ring.

Then Thursday came…that’s Laundry Day. It was about five in the afternoon, and I was in the Laundry Room (this is quite a good size room, as rooms go), I casually tossed a pair of jeans from the laundry basket into our front-loading washing machine, and there it went…I could feel the rings moving easily and quickly past my ring finger knuckle. The jeans went into the washer, I looked down at my hand, and I saw the engagement ring teeter-tottering at the tip of my ring finger, and the wedding band was gone. I didn’t hear a sound, I had no idea what direction it may have gone; it didn’t even occur to me that it might have gone into the washer. I was most concerned about a very large drainpipe that sits directly in front of the washer, that’s about four inches wide and infinitely deep. I finished loading what I needed to load, now and then scanning around to see what I could see…seeing nothing. Not Good. I didn’t turn on the washer because I wasn’t sure how this would effect the drainpipe-if water would rise in it, and potentially sweep my wedding band down and or out. I stood for about five minutes in the room, trying to pick up on the energy or the “signs”, as I sometimes do in these situations, and I had a tremendous pull to look directly under the washing machine. I didn’t have a pull to look anywhere else, so I went with that calling. I should mention that the edge of the washer sits about four inches from the deep drain to nowhere. I got down on my knees and looked under the washer…not so slightly under, past lots of lint, fuzz…lots of things, I caught a glimpse of something about five inches back from the edge, that could have been a button, maybe an old toy; it was hard to tell. I reached in, barely able to touch it, and it was my wedding ring. So there it goes again…always coming back. I was very glad to have been reconnected with my friend.

After I put the rings in a place for safe-keeping (I hope), and think about what I should do about wearing them…should I eat more, decrease the size, or hang them from a chain around my neck? I quickly got on the phone and called my Mom and five friends-all people who know the history of my rings. I wanted to find out what meaning they thought this recent ring event had if any…wondering if they thought it meant anything else other than I needed to eat more because my fingers were becoming too thin. The responses were all very “ringlike”. I share these thoughts…to me they represent the magic of the rings and of life. The responses were, “you’re lucky in unlucky situations”, “Jon will always be there for you”, “those rings are meant to always come back to you”, “those rings belong to you”, and lastly from my good friend Cindy, “I think this is a sign, that just like all the other times when your rings left and came back, it’s the sign of a new beginning”. Oh those rings!

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!

What doesn't happen is almost as important as what does happen

It’s been two weeks and two days since my last radiation treatment. I feel improved…some what. I feel relieved and I feel reflective.

What am I thinking about? I’m pondering the events of life. Why things happen? When they happen. Why things don’t happen? How what doesn’t happen is sometimes just as important as what does happen. I’m thinking about the “fork in the road”…my forks in the road.

I’m thinking about how/why shortly after Jon and I had Jamie (19 years ago), our apartment became a casualty of a Con Edison explosion, but we happened to go out for a walk on a rainy August day with a 4 month old baby right before the explosion. If we had been in the apartment we would have more than likely been severely injured. Our next door neighbor was killed.

I’m thinking about how almost exactly a year from that explosion, I woke up one morning with double vision, a week later I was told I had a brain tumor, and three weeks after that I was having brain surgery for the first time. This was unbelievable.

I’m thinking of all the people I know and how they affect my life, and why and how I met them.

I’m thinking about how on September 11th I was on the tarmac at JFK airport, ready to take off to Los Angeles on an American Airlines plane. We were delayed because two reporters from CNN needed to get off the plane, they had apparently just gotten the news before any of us, that an AA plane had just hit the World Trade Center. My plane was held up, we were deplaned and almost as though I was being swept through the airport on a magic carpet, made my way through the crowded airport with ease, and shortly afterward onto an almost empty bus that was making its way out to Long Island where I lived. What if this plane took off? This was extraordinary.

I’m thinking about how Jon worked across the street from the World Trade Center, but hadn’t left for work yet on that day. What if he had left earlier, or the plane that bulleted its way into the Trade Center left later?

I’m thinking about how I was misdiagnosed 18 years ago, and that my tumor wasn’t what I was told it was back in 1990. In hindsight, the doctor doing my surgery was probably not up to such a complicated procedure. I chose him based on the fact that I had several other doctors at the hospital he was at, and that both he and the hospital had an outstanding reputation. Reputation isn’t everything; I know that now. Because my surgeon wasn’t up for this procedure (not many surgeons, if any back then could have been…it was very complicated), he treaded lightly, not really doing what he needed to do to get an accurate pathology, but by doing so, he also didn’t rob me of too much neurological function. I lost my hearing in one ear, I had facial paralysis (which returned). It could have been much, much worse. But it wasn’t. This is lucky.

I’m thinking about how I had a doctor that examined me every year, but never looked hard enough at the yearly MRI’s to notice that my tumor was growing. It grew to the size of orange, and yet miraculously we (the tumor and I) lived alongside each other. Considering all the nerves that it was next to, it could have made it so that I needed a feeding tube, a breathing tube, lost my sight…killed me; but it didn’t. This was a miracle.

I’m thinking about how I finally met a neurologist that felt that there was something significant enough on my MRI that I should seek a consult with a neurosurgeon. This was good timing.

He referred me to three surgeons. Two of the three thought the tumor was a chondrosarcoma. These two surgeons suggested very aggressive surgery. The other surgeon thought that it was a different, more nebulous tumor, and mapped out a much less invasive surgery. I chose this surgeon because I felt it was better to have a less invasive surgery to find out exactly what the tumor was. This was smart thinking.

The surgery proved that it was a chondrosarcoma. Now I was armed with a real diagnosis. My surgeon suggested two other surgeries to remove the tumor. I was able to stay calm in the eye of the storm. I was able to stay positive. This was amazing.

My surgeon didn’t feel that Proton Therapy was effective for my type of tumor. He felt that Proton Therapy was only for small, round tumors. I was perseverant. I realized that doctors, no matter how good, or well regarded they may be, are just people, and they don’t know everything about everything. This was insightful.

I found out that Proton Therapy is not just for small, round tumors, but more specifically for large, hard to reach, irregular tumors. I found out that this radiation therapy is the best therapy for chondrosarcomas; that there is evidence that surgery actually stimulates the growth of chondrosarcomas, and that there is quite a long history of success for people who have been treated with Proton Therapy for chondrosarcomas. This was enlightening, and fortifying; this was the best chance at a cure that exists.

I’m thinking about how I was able to find my way to a radiation oncologist at Mass General that probably knows more about the kind of tumor that I have/had than any other doctor in the country, and I did it by self-referring myself. This feels like…I don’t know. Some would say devine guidance, some would say law of attraction, and some would say luck. This was amazing. This may have saved my life.

When it was time to go to Mass General Hospital in Boston for seven weeks for treatment, I was able through the help of friends to find an apartment. A friend of a friend was leaving her apartment in Boston for almost exactly the time period I needed to have one, and she refused to accept any payment for the apartment. The apartment was only three blocks from the hospital. This was good fortune.

Friends and family moved their own schedules and commitments to help me out, which made things so much easier than it otherwise would have been. This was so appreciated.

I’m thinking about how much more experienced and confident I am now, than I was when I was first diagnosed. That very little trumps age and wisdom. I don’t think I would have found my way to Proton Therapy 18 years ago (it did exist back then, but in embryonic form). The internet didn’t exist, I still lived in the belief that doctors knew everything, and if they didn’t, they would say so. I wouldn’t have questioned my doctor back then. Always feel like you can question your doctor. I’m thinking about how incredible it is, that even though my tumor was growing, it grew so slowly, that Heidi was able grow up enough to find a way to its end.

And then there were the other things that have happened recently…meeting a woman randomly in front of a hotel near the hospital that had had brain surgery two months before I started radiation, five months after I had my second brain surgery…we met and we talked and that was timely and comforting.

When our car died three weeks before we were going to need it most, we were already resolved to the fact that we might not be able to find the car we wanted before I started radiation. Then I had a dream on a Tuesday, and on the following Saturday a salesman we met for five minutes, two weeks previous, called us to say that he had unexpectedly come into possession of precisely the car we were looking for, were we still looking? We were. This was clairvoyant! The next call we got asking us if we still needed a car, was a week before my radiation treatments were ending. We didn’t need one anymore.

Just when I needed to stay in a place that didn’t have stairs to climb, and was a bit closer to the Proton Center, I lost the keys to the apartment I was staying in and had to stay in a hotel until the locksmith could come and change the locks…these things make me wonder. What is luck? What is timing? What is planned? What isn’t planned? What is the power of positive thinking? What is a miracle?

I cannot stop thinking about the idea that what happens is just as important as what doesn’t happen. I can not stop thinking about how many other things that have happened to me in my life that I haven’t mentioned here seem driven my some other force. What is that?