Thursday, May 10, 2012
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 going...to post a larger portion of my blogs directly to the Brain Matters website at brain-matters.org. I will occasionally post here, but more often I will post there brain-matters.org/heidis-blog. I also Tweet at brainmattersorg should anyone who's following or has stumbled onto this blog care to find me there. Thank you, Heidi
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.