Wednesday, August 27, 2008

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?

3 comments:

PJ said...

Everything in this life, in this world, happens for a reason. Nothing seems to be more apparent to me as the years pass than this simple truth.

Whether you want to assign this to faith, a higher power or some mystical force is entirely your choice but there is no denying it once you recognize the synchronicity of events as they occur over the course of our lifetimes.

I always think back on that afternoon of the story of getting off a bus on Fourth Avenue and hearing of you suddenly running into Russ and Masako by coincidence. A casual conversation, a few moments spent thoughtless that may have changed fates.

That you are strong, that you have faith, which you continue to fight, to struggle, to overcome is a testament to the wellspring of strength that is within you and maybe indicates that there are important things ahead in life for you to still accomplish.

I know that I number among many who are glad you have withstood this trial and that you have come out the other side and are on the way to some semblance of normalcy once again.

To me, I find it is the definition of the word blessing and I am happy that it came your way.

PS - deleted comments will teach me to proofread and spellcheck before posting.

"Elizabliss" said...

Carl Jung called it synchronicity. Though that may be part of what you have been thinking about, I believe, like pj said, it is more than that. I'm happy to have found your blog. The more people have the opportunity to learn about chondrosarcoma from a patient's perspective the more personally empowered they could become.

Randy Peyser said...

Heidi,

You are a courageous woman who has endured much. You are a seeker who teaches from experience, and who helps many I am sure.

Your story is touching. I think about the kinds of things you write about often. I published a book recently called, "The Power of Miracle Thinking." I wanted to find out what kinds of thoughts, beliefs and attitudes people held, as well as the actions they took, that allowed their miracles to happen.

I would love to know, from your perspective, why you think you are here, having endured all that you have endured and still being blessed to be on this planet.

Your life is a miracle and a blessing to all of us who get to read your words of wisdom.

I am thankful that you get to be here for your family and animals and all of your loved ones. I am grateful that you get to play in this world in the ways that you want to show up and play and be YOU in this lifetime.

I wish you many more miracles and wonderful abundance of health.

My website is http://www.miraclethinking.com in case you would like to see about the work I've been doing around the creation of miracles.

Sincerely, Randy Peyser