Sunday, September 26, 2010

Monsters Under the Bed

Remember back when we were kids and were afraid of the dark?   I think there is a time in all of our childhoods where we heard the house creak or wind blow and thought the worst.   We would lay in bed waiting for a monster to jump out of the closet or pop up from under the bed.   It was a time when we wanted to close our eyes to keep out the bad stuff, but at the same time were too afraid of what would happen when we closed our eyes.

Tonight as I lay in bed trying to fall asleep I found myself thinking about scary things that go bump in the night.  I don’t think I was ever afraid of monsters in my closet, but I was sure there was some living in the basement.  One of the houses I lived in when I was young had in playroom in the basement.  My sisters and I would play downstairs all day without a care, but I was only comfortable down there in the daylight hours.   The room only had small windows near the ceiling, but I always knew when it was getting dark outside and would avoid the room at all costs.   If I had to go downstairs by myself at night, I would creep down the stairs, turn on every light all while calling out to the monsters or ghosts that took over the basement each night.  One night in particular I remember telling them:   “It is just me; I am only here to get something.  I promise I will be out of your way in a right away.”

I hate to admit it, but I am 38 years old and find myself again afraid of the dark.   I do not think I am it is the dark itself that I fear, but of the moments after I turn off the light, the in between time of awareness and dreams that I think of monsters.      For the last several years I have had trouble falling asleep.   I can be dead on my feet, barely keeping my eyes open and as soon as the lights go out I am wide awake.  The monsters have changed forms over the years, but they are still there.  Once again it is the scary thoughts that keep me from falling asleep.   The thoughts are no longer creatures under the bed or in the closet, but of all the fears of life that I can keep out of my head during the day, but come alive when the room is dark and quiet.    It drives me crazy that I have no problem sleeping during the day.  In fact, I can be asleep moments after I close my eyes when the sun is in the sky, but at night sleep evades me. 

I have found that it is easier for me to write blog posts at night when I can’t sleep than during the day.   I think that can partly be contributed to not questioning my feelings and thoughts.  I am usually so tired that I just concentrate on getting the words out and typing without too many spelling errors instead of second guessing what I am saying.   Tonight I have come to the conclusion that there is more to it.   I think I can open up more about my feelings because they are closer to the surface.  Those feelings are the monsters under the bed that I can avoid during the day, but come out in force in that halfway place between being awake and asleep.

I try many things to help me fall asleep.   I have been known to drink herbal tea, count sheep, use imagery, meditation or listen to music.   Distraction seems to be the trick.  I have a special “sleepytime” playlist on my iPod.  When that does not work, I put on one of my favorite movies and set the sleep mode on the DVD player.  Usually one of these works.  I know the movies or song lyrics by heart that I can close my eyes and can the movie scene in my head and know what is coming that I do not need to watch the tv.

However when I have a lot on my mind I find that even these tried and true solutions don’t work.   I have written lately about my searching for hope and meaning of my life.   I have been thinking about these topics so much they are keeping me up and even spreading into my dreams when I do sleep.   Why is it that you can tell yourself all types of things, but you cannot hide the truth from yourself in the dark of night?   If only the routine of my parents looking under the bed and in the closets as they tucked me into bed could still work.  After countless nights of insomnia I am no closer to figuring out how to solve my problems with hope or conquer the fears of living with and dying of cancer, but I am determined to keep trying to sort it all out.  So after I publish this new entry and before I lay my head back on the pillow I will concentrate on sweeping my demons away from my mind, at least for tonight. 

Tuesday, September 21, 2010

Discovering Hope

In my last entry I wrote about my realization that I was living without hope. I have spent a lot of time since then thinking about hope. What is hope? Where does it come from? How do you sustain it? And maybe the most important question is: How do you decide what to hope for?

Several months back I wrote about an episode of Grey’s Anatomy where a terminal cancer patient talks about how sometimes hope can be scary. I can totally relate to that. For me hope has been a double edge sword. Before every scan, every blood test, every doctor’s appointment I would hope that the treatment was working, that I was getting better, and that I was winning and cancer would lose. Time after time I would be disappointed and my hopes would be squashed. I have had this disease for three years and in that time I can only think of one time that the news was good. I will admit that sometimes there was some good news, but at the same time there was also bad news. I felt as though for every step forward I took three steps back. Even when I was told that one time the tumors had shrunk and the clinical trial worked I was afraid to hope that it would stay that way. In the end time showed that the good news could not hold.

After time and time again of being disappointed I told myself that I was changing what I hoped for. I decided to hope for more time and for that time to be quality. That hope came true, but did I dare to hope for even more time. I can’t put a finger on when I stopped having hope, but I am sure that is was not a conscious decision or even tangible moment. I think it just became easier to lose expectations and maybe then I would be surprised when good things happen, or rather would be happy when bad things didn’t.

I don’t know if I have any true answers for the questions I listed above, but I am going to give some of them a try. Let’s start with “What is hope?” As usual when I want to find an answer to something I go to Google and see what the vast expanse of the internet can tell me. So I searched for the definition of hope. The most common definition I found is: To wish for or desire something with the expectation of fulfillment. If we go with that definition than one would have to believe there is a chance that what is hoped for would happen, but even more so would have some belief that it would happen.

That brings to mind another question. How do I hope for something when all the evidence shows the probability is low for it happening? Could it be that giving of hope that something will happen is preventing yourself from having the expectation and thus a way of protecting yourself from getting hurt.

This brings me back to yet another one of the original questions. What do I hope for? Maybe the flaw has been that I have been hoping for the wrong things. I thought that I have made the decision to live for each day and find joy in every moment and had hope that I could do that as long as possible. So where or when did that change. When did I stop living for the moment and just settle for existing? For that I have no answer. I can’t even tell you what I am hoping for, but I can tell you that I am searching within myself for some answers. I am looking for signs of the things I want to hope for, what I want my future to be. I do not know what my future holds and it scares the bejeezus out of me. The truth is I don’t know how long I will live. Medical science tells me I should not have been alive this long. I might have only a few more months to live or I could live another year or 5 years. What I have figured out is that it does not really matter how long I live, but it matters what I do with the time I have. So I am starting a new journey. This is a journey of discovering what I can do right now to be happy and what I want to do with my life. It kind of feels like trying to answer the “what do I want to do with my life”. The answer for today is I don’t know, but I will ask myself that question every day until I get some answers.

I once told someone that life is not a spectator sport. I said that life is about rolling up your sleeves and getting your hands dirty. I guess it is time for me to take my own advice and leave the bleachers and get back on the field.

To close this post, I pose a few questions for each of you to ponder. What do you think is the definition of hope? What are your hopes and what are you doing to make them come true?

Thursday, September 9, 2010

Lessons Learned from Colorado

The last weekend in August, I was in a canoe paddling down the Colorado River. Well in truth I was not doing much paddling, but I will get to that later. I had the opportunity to go on a canoe trip with 13 other single cancer survivors for a three day camping trip starting near Grand Junction, Colorado canoeing into Utah on the Colorado River.

Since I returned, I have spent the last two weeks trying to write this post about my experiences. For some reason the words have just not been flowing. I have started several drafts beginning with how the trip came about for me, but for some reason as soon as I got to the point where I wanted to write about what the trip meant to me, the words failed. I am not totally sure I can find the words, but here is my effort. There are probably many reasons why this is tough for me to write about, but I think the main reason is this trip was very emotional for me. It was challenging to me not only physically, but mentally as well. In truth I think it was life changing, or at least changed the way I think about things.

I can’t think of a time over the last year that I had a better time than the six days I spent in Colorado. Don’t get me wrong, I have had some wonderful times with family and friends, but for many reasons this trip was different.

I went out early and stayed with a friend and visited some of my favorite places and found some new ones. Colorado is beautiful and driving through the mountains and floating down the river with the rock walls on either side was breathtaking. But that was not the most incredible part of the trip. If you have ever seen pictures of that part of the world, you are probably wondering what could be more beautiful than the landscape.

There are two reasons for this. The first was just being able to be out on the water and camping again. I used to be a huge outdoor person; hiking, camping, and kayaking were just some of the ways I spent my free time. But all of that was pre-cancer. I had not been camping in over 3 ½ years and my hiking boots and camping gear had gathered dust. For the past three years the closest I have come to communing with nature was swinging in my hammock. Don’t get me wrong, spending afternoons in the hammock is a wonderful thing, but compared to hiking in Yosemite or kayaking with whales, it was really not cutting it as outdoors experiences go. The real story is I almost let cancer take away something that I truly loved. I almost let the fear of not being physically up for something stop me from even taking the chance.

The other and most important reason can be summed up in two words - the people. I had the opportunity to spend 4 days with people who not only get it, they have experienced it. We represented all parts of the cancer spectrum. Some were diagnosed when they were teenagers and were 10+ years out of treatment and others were diagnosed as adults and were just completed treatment a few months ago. The cancer types and stages varied from Stage 1 Ovarian to Stage IV Hodgkin’s and everything in between. Our age range was 22 to 59 and we came from all over the country. We had lots of differences, but two main things in common. We are all survivors and all single. These other men and women have all been told the three horrible words “You have cancer”. They have all endured surgery, radiation or chemo and the terrible side effects that come along with it, but most importantly they have all survived.

I have never been as humbled as I was as I got to know these other survivors and probably never been as inspired. I am so thankful that I got the chance to meet them and hear their stories.

I did not feel great during the trip. In fact, most of the time I felt like crap. The nausea, headaches and general body pain that have been plaguing me for several months reared its ugly head. I was worried that I was a burden to others on the trip and that I was not pulling my own weight. Thankfully, I was paired with a great canoe buddy and he did almost all the paddling. He even put up with me leaning over the side of the canoe puking up lunch and never once commented on the horrible sound effects I was serenading everyone with. Everyone went out of their way to make sure that I had a great trip.

As I am reading over this, I realize that I am not conveying one important thing that I have learned from this trip and that is hope. Somehow over the last several months or so I lost hope. Hope in living, hope of being happy, hope for a future, and hope of getting better. I don’t think it was a conscious thing or even an unexpected thing keeping in mind my diagnosis, but someone on this trip reminded me that without hope, you really don’t have anything. I was so tired of being scared, disappointed and preparing for death that I forgot to live. I forgot to find the things I truly enjoyed and find a way to do them. A year ago I was so determined to live in the here and now and find happiness and enjoyment in everything I did. In spite of my determination to live life to its fullest, I got caught up in the mundane of being sick. Looking back I now know that I have been wallowing in my own self pity because I felt crappy and did not have the energy to do the things I enjoyed. I learned from this trip to Colorado is you can feel like shit and still have a lot of fun.

I used to be called a dreamer, but sometime during the last three years I stopped dreaming. I think in many ways I have given up on life. I guess I thought if I did not hope for anything past this moment, then I would not be disappointed. I was letting cancer win. That is not something I can do. Cancer may still cut my life short, but I need to find ways to make sure it does not take away my happiness and most importantly change who I am. Cancer changes a lot of things about a person. It has changed the way I look, the things I am able to do, but it does not need to change my personality. It cannot be allowed to change the core of who I am.

I have not yet figured out how to make sure I keep have hope or even what I want to hope for. I have a lot more reflection and journaling to do, and plan to talk to the people I met on the trip and other survivors to find out ways they have kept hope their lives even in their darkest moments. Acknowledging that I need to change the way I am thinking is the first step. Now I just need to figure out the next ones, but I know I can do it because I have a lot of people in my corner to help me.

Thank you to all that made this trip possible, it has meant more to me then you can imagine.