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.

Thursday, August 12, 2010

What makes a person a cancer survivor?

Recently the Texas Journal of Nursing reprinted one of my blog entries to educate nurses about the issues of young adult cancer patients. In the article the author described me as a cancer survivor. I showed the article to a couple of friends and family members and one them commented that they did not think I was a survivor since I still have cancer. It made me think about what makes a person a cancer survivor. The National Coalition for Cancer Survivorship (NCCS), National Cancer Institute's Office of Cancer Survivorship and LIVEStrong (Lance Armstrong foundation) all define a person as a cancer survivor from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor.

For a long time, I had a hard time laying claim to the title of “Cancer Survivor”. It has been three years since my diagnosis and throughout that time I have never been in remission or had a test result of no evidence of disease. I preferred to call myself a “Cancer Fighter”. I felt that calling myself a survivor was tempting fate and since the cancer was still ravaging my body, I had not survived the disease.

Last fall I participated in the 24 hour cycling event, 24 Hours of Booty and when I pinned my number to my jersey, I added the “I’m a Survivor” sign as well. I decided that even though I had not beaten the cancer, the cancer had not beaten me. I had survived two years of living with cancer, months of chemotherapy, radiation treatments and all the side effects that come along with treatment. I was indeed a survivor.

When I was questioned whether I was survivor when the article came out I told the person I was a survivor, but since then I have spent a lot of time thinking about it. While contemplating about this, I have been thinking about all the people I have met that are also battling cancer. In the past three days I have learned that a 9 month old baby has had more than 3 brain surgeries and is preparing for yet another one as I type this. Another friend has learned about a 3rd recurrence just this week and is facing more treatment and the possibility of another surgery. Then there is a 5 y/o boy that has been battling cancer for two years and is having severe stomach pain that is a result from chemotherapy. These are just a few examples of those who are valiantly battling cancer and are indeed surviving it.
If we think along the lines that you are not a survivor until you beat cancer, what does that make the millions of people currently undergoing cancer treatment? I would indeed call them survivors.

I googled the definition of a Survivor. I found the following definitions.
1. a person or thing that survives; specif., a person who has survived an ordeal or great misfortune
2. a person regarded as resilient or courageous enough to be able to overcome hardship, misfortune, etc.
3. a person who continues to function or prosper in spite of opposition, hardship, or setbacks.
I think about those I know that have been affected by cancer and feel they embody these definitions.

Wikipedia defines a cancer survivor as an individual with cancer of any type, current or past, who is still living.

I disagree with the Wikipedia definition. I think we should go one step further. I believe cancer survivors include those that have died of cancer. Cancer may have taken their life, but if we follow the meaning of the definition, death does not trump a person being a survivor.

There are two dates coming up that invite you to celebrate with me and use them as a time to reflect on what makes a cancer survivor.

September is Ovarian Cancer Survivor Month and September 3rd is National Teal day. I invite you to wear teal on this day to remember the many women affect by Ovarian Cancer. (

October 2nd is LiveStrong day. It was inspired by Lance Armstrong as the anniversary of his cancer diagnosis. I encourage you to wear yellow on that day to support the 28 million people in the world that are cancer survivors. (

I would be interested in hearing your thoughts on what makes a person a cancer survivor.

Wednesday, June 30, 2010

Eenie, Meenie, Miney, and Moe

Yesterday I went to the pet store and picked out some new fish. It was depressing over the last week to look at an empty tank and it is wonderful to see some new vibrant fish sharing my room with me. Meet Eenie, Meenie, Miney, and Moe. (pictured below from left to right)

They behave differently than Horton. They are much more active and tend to chase each other. Unlike Horton, they love fish food and come to the surface every time I lift the cover. Last night I could not sleep, so I just sat up in bed and watched them. It was very relaxing. I will write more soon, but I wanted to introduce you to the new additions to the family.

Tuesday, June 22, 2010

A Lesson on Life and Death

Many of you know that I used to have a golden retriever named Oscar that I loved a lot and that I miss often. What many of you don’t know is I have another pet, a Tetra Fish named Horton. I brought him home in November 2008 with a few other pals (Thing1 & Thing2), but he was the only one that remained after three months. He took the move to my parent’s house in stride. I found myself talking to him every day; saying good morning or good night, telling him about my day or just asking how he was. I know it might seem odd that I talked to a fish and could not understand me or even hear me, but he was my buddy. I knew things about him like what food he preferred and which live plants he liked in his aquarium to munch on.

Horton died today. I had him for over a year and half. When I woke up I looked over at his tank and saw him lying on the bottom and I immediately thought he was dead, but upon a closer look, I realized that he was still on the process of dying. He was on his side and his gills were moving. He was gasping for air. It was so painful to watch him knowing there was nothing I could do to save him or to ease his suffering. I knew too well that death has own time frame. I screamed an “Oh no, Not Horton” when I first saw him and then proceeded to sob for several minutes.

It may seem weird to you that I felt like I have a bond with Horton and probably think that my reaction to his death was a little much. You might be thinking to yourself, yeesh it was just a fish and maybe asking if fish can feel pain. I know the Horton was just a fish, a tiny being in the circle of life. But he was my fish, something I care for. Even as I write this, tears are in my eyes. I think there are many reasons for my emotions. Horton has been a constant in my life during a time that everything seems to always changing and often in crisis. He also depended on me to care for him. His death is just another example of the losses that we experience every day and for me another harsh reminder of life and death. It was hard to watch him die without thinking about my own death. Did he feel pain? Is that what it will be like for me as I am dying? Will I be lying on my bed gasping for breath?

My energy level is low these days and I try to keep it in reserves so I use it when I want to go out with friends. So I spend a lot more time in bed or lying on the couch. I try to fill my time up with books, tv, music, movies and crossword puzzles, but the more I feel bad, the more time I have to think. I have been thinking more lately about the process of dying and what that will be like for me. I don’t know when I will die. My time was supposed to be up over a year ago. I am very blessed to have been given the last year and love the gift of each day. It is hard though to not wonder about the future. I wonder why I have been given this extra time and I wonder when this time will end. I feel like I am living in a bit of limbo. It is impossible for me to plan things for the future. I have no idea how I will be physically in two weeks, two months. Do I dare hope for more time? I have been preparing for over a year for my death. Sometimes I think I am ready for this whole dying process to start already. Please don’t take me wrong, I do not want to die anytime soon, but wondering when it is going to happen and how it will happen is excruciating. Tonight I am sad. Sad for the loss of my pet and sad about how painful it is to think about my death. I think it is ok to be sad though and good that I allow myself to think and write a about this topic. It is an important one and we may not want to talk about it, it is always there in the back of my head.

Friday, June 18, 2010

Life goes on…..

….and sometimes it feels as though it is happening without me and I am left behind. I had dinner tonight with my ex-boyfriend and I found out that he and his wife are expecting a baby girl to be born in August.

As I lay here tonight I find myself very sad. It is not that I miss him or anything like that. We dated for five years and though we loved each other and genuinely enjoyed being together we knew we were not meant to spend of lives together and we ended it on good terms and have become friends. I am so happy that he found someone that he was meant to be with and I am very excited about their news.

I just feel as though his wife is living the life that I wanted, but not in a jealous way at all. Before cancer I dreamed about meeting someone that I would spend the rest of my life with. I am not sure if I ever wanted kids, but cancer took that decision away from me right along with the opportunity to be with someone for the rest of my life.

This week I went to a young adult support group and the topic was about sexuality and relationships in the context of the young adult cancer survivor. It was a good discussion, but I left with the understanding that a relationship and sex is not an option for me. We talked about when is the right time to disclose that you have or had cancer. There were some great suggestions, but I don’t feel like they apply to me. How do you tell someone that you are interested in that you have advanced incurable cancer that is spread throughout my body, that I have no job, can’t drive, and live with my parents and I have no idea how long I will live. Of course this conversation would happen after I met someone that can overlook how much weight I have gained due to having cancer and that I walk with a cane. I know that live in a dream world sometimes, but get real people; something this farfetched does not even happen in my dreams.

This is just another example of how much cancer has ripped from my life. Just another loss that I will work through.

I have been feeling like shit lately. May was a busy month and I think I overdid it. I am glad I went to camp and also to the church retreat, but with those trips on top of my sister and her family in town I now seem to be paying the consequences. I have not written a blog in a while. There are several reasons why, including my busy schedule over the last month, but in the beginning it was because I was sleeping pretty good and my usual writing time occurs when I can’t sleep. Unfortunately I can no longer give the same reason. I have not been sleeping well over the past two weeks, but I have felt so poorly that I did not have the energy to write. I mostly just laid in bed whimpering until exhaustion took over.

Last night I had another one of my coughing fits that seems to become more frequent of late. After coughing so much I was sure I had coughed up a lung, I stopped coughing long enough to vomit. After feeling physically spent I dragged myself back to bed and curled up into a fetal position and cried. Finally around 4am my body gave in and allowed me to sleep. When I awoke I at felt a little rested, but was just worn out. I took it easy until my doctor appointment this afternoon and when I got home all I wanted to do was curl back into the ball on my bed. However, I had plans to meet my ex-boyfriend and did not want to cancel on him two weeks in a row.

He commented that I looking like I was doing well and he was surprised by how much energy I had. What he does not know was that I was snoozing on the couch up until the moment he picked me up and immediately upon return home I took a nap. There is something that provides energy when I really want to do something. I call it being “on”. No matter how I am feeling, if I need to be “on” I somehow find the energy and am usually good for about two hours before I start to crash. I think part of the reason I am able to find energy to do something I really want is because I am so determine to live life on my own terms and to be able to enjoy my time with people. I do not spend too much time with my friends and when I do I want it to be good, so I push away how I feel and concentrate on enjoying it. This does not always work and when it does however I was feeling beforehand comes at me ten-fold, but it is usually worth it.

Now that I have been able to let out my feelings, I hope this horrific headache will go away and I can get some sleep.

Saturday, May 22, 2010

Camp Mak-A-Dream Ovarian Cancer Retreat May 13-17, 2010

 View from camp

Last weekend I had the awesome opportunity to go to beautiful Gold Creek, Montana to Camp Mak-A-Dream’s Ovarian Cancer Survivors retreat.
After a long day of travel and having to accept the assistance of wheel chairs, I finally arrived at Missoula’s airport and was met by the smiling faces of some of the camp’s staff members. After going to baggage claim, I met a few of the strong warrior survivors I would be spending the weekend with.

Caught this one walking to the cabin, 
now I understand the term "Big Sky Country"
Meeting these women and hearing their stories is an awe inspiring experience. Like me, every one of them has been treated for Ovarian Cancer and although all of experiences are similar, each of their journeys is unique. There were 12 survivors at the retreat and I loved the intimate setting that gave us all an opportunity to get to know each other.

Some of the ladies enjoying the nice weather 
The three days was spent in workshops and small groups. We had a motivational speaker talk to us about the importance of doing things that feed our heart and asking for help, an oncologist that discussed treatment advances, American Cancer Society’s Look Good, Feel Good workshop, art therapy, healing benefits of tea, coping skills and self image, time in the art studio to express our inner creativity, massages, hot tubbing and plenty of time to chat with each of the women. The staff was great about supporting us and worked very hard behind the scenes to make our stay at camp wonderful.

Sampling of my art projects

I had a couple of rough days. The trip west took a lot out of me and that and the elevation difference, I was in pain and very tired. The first day I tried to be very stoic and not let on to anyone how I was feeling however, it was apparent on my face on day two that I was not doing very well.

People came to my aid and set things up so I could sit in comfortable chairs with plenty of pillows to ease my pain, fetched things from my cabin so I did not have to walk much, and many other supportive acts. I realized that all you have to do is ask for help and you shall receive. The staff and participants were happy to help and expressed to me that it feels good for them to help others.
Jamie - One of the Presenters
Like last year, there are some women that I will stay in touch with and others that I will probably never speak to or see again, but that does not mean they will not be in my thoughts on a daily basis. I will send them healing thoughts for their own journeys hoping their treatment will be successful and they can get back to their lives pre-cancer. Although many of those with a cancer diagnosis are never really the same after they have been told those three horrible words “You have cancer”, many are able to live a more aware life and in some ways a better life post cancer.

At camp we refer to the other survivors as sister geese. Geese fly in the “V” formations. Each goose, by flapping her wings, creates an upward life to the goose that follows. When all the geese do their part in formation, the whole flock has a greater flying range than it would if each bird flew alone. In addition, when a goose lags behind, the others “honk” her back into place. And more importantly, when a member of the flock has to drop out because of sickness or injury, at least one of her flockmates will stay with her to watch over and take care of her.
"International Night"
The women I have met at camp have become my flockmates. We are now a part of a special sisterhood, unasked for, but deep and empathetic in our support. We have bond between us now, and all it takes is a plea for support and we will rally around. I lost two ‘sister geese’ from last year’s retreat and I will always remember Marcia and Michelle and the impact they made on my life.

To all the women at camp this year, I thank you for sharing your story with me and making me a part of your journey through this horrible disease. I am better for knowing you and will always keep you in my thoughts.

Monday, May 10, 2010

Moments of Transformation and Gratitude

Last week I went to a lecture called “Healing from the Inside Out: The Regenerative Power of the Human Spirit”. The focus of the lecture was to address the concept of healing can happen from the way we think, feel and live our life. The facilitator, Dr. Lerner, talked about a moment of transformation that people experience that often leads them to think about life in a different way. Sometimes it is caused by an illness, crisis or some type of event. Dr. Learner discussed that he has worked with many cancer patients who describe the news of their diagnosis as their moment of transformation and that in that moment they learn what is most important in life.

I found this very interesting. I think we often coast along life doing what we think needs to be done more than actually living life. That was definitely the case for me. About six months before I diagnosed I was suffering from a major depression. After much soul searching I realized that I really did not enjoy my life. I was doing many things I thought someone of my age “should” be doing. I had a good job, which although I enjoyed, it was not what I really wanted to do. I had been talking about dreams I had for the future for many years, but I never seemed to put into action anything that would start those dreams. As my New Year’s resolution I decided that 2007 was going to become the Year of Alli. Starting then I was going to figure out what exactly would make me happy and I would go after it. I changed a lot of things that winter and I have to say, I had more happiness in those months than I had in years. I started remembering what I was all about.

Then my diagnosis hit. It was not what I really had in mind when I started the Year of Alli. Looking back however, I think it was because of my attitude that year that I had the strength to get through my diagnosis. I think I did a pretty good job of balancing my illness, treatment and still trying to be happy, but I think in whole I was just coasting along again doing what I needed to do to survive. It was not until I was told I was going to die that I think I really started to live again. Somewhere along with the prognosis of death, I had my transformative moment. It took me accepting I was dying to truly live. In many ways I think I am one of the lucky ones. Not because I am still alive, but because I have had this time to concentrate on life. I think that knowing you have a limited time to live allows you to stop taking for granted all the wonderful things you have in life.

Some of the only ways I have gotten through all the treatment, physical and mental challenges of the last several years was all the good times I have had that I could remember. As I was sitting in the hospital enduring chemotherapy, I would close my eyes and pretend I was back on the hiking trails. One of my favorites is at Yosemite. I tried to remember what it felt like climbing up those trails. It was exhausting and painful at times, but I also remembered how beautiful it was the whole way up and how exhilarating it was to get to the top of Nevada Falls and look over the Yosemite Valley knowing I made it up there under my own steam. Whenever I had to undergo radiation, CT scan or other test, I would close my eyes and imagine I was back on the beach of Aruba or kayaking with the whales in Washington State. I often spent time going through pictures. Whether it was pictures of California, hiking or camping trips or my cherished pictures of my family I was always able to stir up some memory that helped me make it through the rough times.

During my lowest moments when I would feel too weak to leave the house, I would go through my “Warm Fuzzy” box. This was a box of mementos from my time in California when I was a youth minister. This box contains pictures, notes and letters from youth, crafts and other memories. After realizing how much this box cheered me up, I started collecting items from other times in my life. I never got around to putting any of these things in a scrapbook, but that is ok – a box is enough. Whenever I need a pick-me-up I just open up a box and I am transported to that moment and get to relive it.

I watched a movie last night where the main character would tuck her son into bed at night and they would list the things they could be thankful for. If the son could not find something he was grateful for, she would find a way to take what upset him and turn it into an opportunity to be grateful. I have thought about that a lot today. It has not been one of my better days. I have been feeling very weak and generally feeling crappy. It is easy on days like this to get down in the dumps and be negative, and I need to find a way to concentrate on the good stuff instead of the bad. I have decided to make it a daily ritual for me to name the things I am grateful for tonight each night as I go to bed. So as I go to bed tonight I am grateful for being able to spend another Mother’s day with my family. It was wonderful to have brunch with my family and I loved seeing my nephews today. I am grateful for their hugs. At one point I grabbed my youngest nephew and tickled him. When he had enough, he cried “Auntie, Auntie”. This is my cue to stop. It is our version of saying uncle. What a wonderful moment. I am so grateful for every moment I get so see his and all my nephews smile.

Tuesday, May 4, 2010

A bit of this, a bit of that....

Over a week has passed since I last wrote a post. Since I usually write at night when I can’t sleep, we can infer that I have been sleeping better. Until tonight that it, since it is 2am and I am exhausted but wide awake. I have thought about writing over the past week or so. I even have a list of possible topics, but there has been something stopping me from writing. I wrote several weeks ago that I have been faking it and only been showing the good stuff to people. My blogs are somewhere that I do not feel I have been faking it. Since I write at night when I am tired, I am able to write just how I feel at that moment and there is little or no filter on whether I should say something or not.

During the day, that filter is very much there. I start to think of things to say and all of a sudden, I start talking myself out of things I was going to write, worried about how people might read them, afraid my words might hurt someone or worrying if I should share so much. I then start to think about what type of things the people that read my blog want to hear. I came up with a whole list of topics. The thing about all this, I created this blog because I wanted to provide my family and friends with updates on my cancer, tests and treatments. I never dreamed that people that I did not know would want to read it. It quickly dawned on me that this blog was as much for me as it is for others, if not more so. It has given me an opportunity to let everything I am thinking and feeling out. It does not matter if I am having a great day or a bad day; I have a place to write about my feelings, experiences, hopes, fears, dreams, and prayers. The benefit of this blog format over a journal is I can share it with people and have gained so much support from the comments and feedback. Somehow people I did not know have found my blog and this has given me an opportunity to share my life, my journey with others; some in similar situations and just maybe my words can help them.

So before I talk about how I feel today, I just want to thank you for taking the time to read this blog, for taking time to comment. I love reading the comments that people write. Sometime I know the person comments, some are anonymous and some of you who I have never met, I consider you another one of my friends and support group. They say it takes a village to raise a child, I say it takes village to go through an illness and my blog has allowed me to share with my village my feelings and in response I receive so much support.

Lately I have been feeling tired. This seems to be a theme for the last 8 months or so, but there is a weariness that is added to the fatigue. I am always struggling with getting quality sleep, but that has been more important than ever. My tailbone is still causing me a lot of pain. This is very frustrating to me. It has been almost 3 months and I had hoped that at this point I could stop using the cushions, but no luck. I have two cushions that are my constant companions. I have even named them. The one I use most often is a red round rubber doughnut named Bess. Sitting in hard chairs, car rides or sitting in restaurants would be impossible without her. The other cushion I have is a blue foam wedge with a cut out in the back for my tailbone. His name is Peter and he is the one I use when sitting on sofas and cushioned chairs. I know I look pretty funny walking into a restaurant or bar carrying a red doughnut with me, but I am getting used to the stares. I am not sure why I felt the need to name the cushions Bess and Peter, but they just seemed to fit.

Last week I started taking a water exercise/therapy class at the YMCA with my mom. I have not been able to get any type of exercise for over a year due to breathing issues, balance, pain, tailbone, infections and other physical limitations. I thought about yoga, but due to the tailbone and the balance issues that is out. So we looked into something in the water. Mom and I started last week and have had two classes so far. The next one is tomorrow morning, which is why I really need to get some sleep tonight. I can tell you that this class is whipping my butt. I felt so tired after class last week. It seems like the things we are doing in the water should be easy since it is low energy, no impact and an easy pace. But let me tell you that while walking/jogging in the water is easy than on land, it is still no walk in the park. Even though it hurts and is tiring, it feels good to be able to do something besides lay around the house. I think it will even help get me back on a normal sleep cycle.

Next week I go to Montana to Camp Mak-A-Dream for an Ovarian Cancer Survivors Retreat. I went last year and it was wonderful meeting other women that have gone through the same thing. There are workshops and games, art and other fun stuff. I am really looking forward to it. I honestly did not think I would be alive right now and in no shape to travel across the country, but I have been blessed with time to be able to do this. Camp is free, but I could not have afforded to go if a wonderful friend had not provided me with his frequent flyer miles to cover the airfare. Until my house sells, I have no money to spend on anything but medical and prescriptions costs.

Well folks, I am off to sleep now, or at least an attempt at sleep. Thanks for reading.

Thursday, April 22, 2010

A visit from beyond

I just had a great experience. I was sleeping and Oscar came for a visit. Even though it was a dream, it was more than just a dream; it was my precious Oscar coming to say hi.

In the dream I was at my condo and I walked into the living room and there he was. When I first walked in the room, I noticed there were big puffs of cotton balls and some torn pieces of blue fabric. I thought to myself, what happened here. Then I looked down and Oscar was lying on his side and he looked up at me and his ears perked up.

I was surprised to see him and I said to him “I did not know you were here. I am so glad to see you, but you did not need to make such a mess to get my attention”. I remember thinking that he probably needed to go out. Around that time, I heard wonderful music. I started to turn off the lights and told Oscar to head back to the bedroom and I would be right there. When I went to turn off the music I realized the room held little furniture and no stereo.

As I walked to the bedroom to let Oscar out the back door, I wondered where the music was coming from. I looked for Oscar, but at that moment I woke up. The music I had heard was real and had awoken me. I had left my iPod on when I went to sleep, without setting sleep mode. Over 1 ½ had passed since I must have fallen asleep. As I woke up I felt both happiness and sadness. I am so glad that Oscar came for a visit, but so sad it was so short.

There are so many things about my dream that felt off, but in that moment I was sure it was happening. This is not the first time that Oscar has visited me in my dreams. The first time he visited was a couple months after he died. We were both on the bed lying forehead to forehead. I remember what he felt like, what he smelled like. When I woke up and realized that he was gone it was like losing him all over again. After that I enjoyed every visit, they are such gifts. I know it is his way of telling me hi and that he is patiently waiting for me. The memory of him is still so clear in my mind as I write this, the way his muzzle was white and his eyes danced when he saw me, how warm his fur felt when I rubbed his neck.

I am annoyed with my unconscious self that I spent precious time with him being upset with him that he tore up one of his toys. I remember thinking that I would have to clean it up before someone comes to see the condo. Even in my dream I was aware my condo was for sale and I did not live there anymore. It is weird that I could be aware in my dream that I was moving, but not aware that Oscar passed away over two years ago. I was surprised to see him, but if was so real to me, it did not occur to me at the time that he was not there. When I awoke, I stayed in bed for a moment and talked out loud to him. I said,
“Oscar my sweet boy, thank you for coming to see me, I love you so much. You are such a good boy. I know you are just over the beyond waiting for me. I miss you buddy, but I will be with you soon.”

As I became fully awake I knew it would be a while before I could go back to sleep and I wanted to write down what happened so I can remember it very clearly.
I was feeling kind of blah today and a visit from Oscar was just what I needed. Even with all the love and support from all my friends, I sometime feel very alone. His visit helped me remember that I am never alone and that he is always with me. I miss him so much and it felt so good to have him with me even for just a few moments.

It made me wonder if the same thing will happen to me when I am dead. Will I, like Oscar be able to come back and visit the ones I love in their dreams? Will I be able to talk with them, assure them I am ok? Will it be a comfort to them as it to me when I see him or will it cause them distress?

I have written before about what I think heaven will be like for me. I have no fear about what will happen when I die. In fact, it is a great comfort to me to have a vision of the afterlife. I only fear the actually process of dying. It is then when I think I will feel pain. I imagine that the moment I die all the pain and suffering will float away and I will feel this sense of peace and comfort like I have never felt before. I am certain that Oscar will be waiting for me to show me the ropes. At this moment I am impatient to see him again, but at the same time not ready for my life to be over. I think that when the time comes for me to die, I will be ready. When Oscar was still alive, I remember telling people that Oscar would tell me when he was dying and when it was time to let him know. He was a sick a couple of times in the months before he died, but part of me knew that his time was not up. I can’t explain it, but I just knew when he was ready for me to let him go. It was an awful time for me, just weeks after I was diagnosed and I needed him more than ever, but somehow I knew it would be ok and it was his time to die.

I only hope that when my time comes my family and friends can feel the same calmness and sense of certainty that I felt with him. I want people to remember that I am in a safe, wonderful and peaceful place and just like Oscar was, I will be waiting for them.

Tuesday, April 13, 2010

I'm not ok - I've been faking it.

Wow, three blog posts in one week!!! I guess I have a lot to say or maybe I have been very contemplative lately.

I read a blog of fellow cancer survivor today. We met online and although we have never met in person, I consider him a friend. Reading his blog was emotional for me. He wrote so many things that I have felt, it was like he was tapped into my feelings. It is filled with emotion and thoughts around his cancer, his recent relapse, treatment and what if any future he has. It reminded me of my past few posts, especially about hope being scary.

I get so much support from my online friends that I have met through Planet Cancer, Facebook and Twitter. We may have not met in person, but I feel as the majority “get it” and therefore inspire me all the time. Reflecting on my friend’s blog and some comments made recently by the people in my life, I wonder if I have been completely honest with people about where I am at physically and emotionally.

Writing this blog is a great release for me and often is a complete stream of consciousness. As you know I have worked very hard for the cancer to not control my life and I am committed to making every moment count. I wonder if by trying to be positive I am giving off the wrong signals to my friends and family. I want the short time that I am able to go with my friends to be filled with joy; I find it hard to really talk about how I am feeling. After a few comments from friends about how good I am looking, and that I must be feeling great, it dawned on me that in not wanting to fill our time together with complaints about how I feel, I have not shared the truth about what is going on with me. Am I doing a disservice to them and/or myself? I think some people have the impression that I am actually getting better since I do not complain about my physical health. It is now obvious to me that my sunny/fun/smiley attitude is giving people the opposite message I should be. Sometimes when people ask me how I am doing, I respond with “I’m crappy” They often say you can’t tell by looking at me. My response then is “I fake it well”.

I was getting frustrated with some of the comments people were making about how good things are going, how I have lots of energy and that I seem really happy. For I while, I felt like screaming “are you really looking at me”. Then it dawned on me that my coping mechanism s to get through every day is giving them false indicators and because I don’t want the time we spend together to be sad, I don’t talk about the reality of how I am really doing.

I am a very functioning person, I always have been and I keep a lot close to my chest, not wanting to impose what I am feeling to others. So I have been faking it and obviously doing a banner job at it. In order to get the kind of support that I need, I am going to talk to some of my closet friends and let them know what has really been going on.

Someone made the comment the other day that I am sure taking a long time to die and asked me if I was getting better. He meant it to be funny, but I wonder if there wasn’t some element of truth in it. I have lived twice as long as we thought and on the outside I don’t look as sick as I did while undergoing treatment. But looks can be deceiving.

So here I am going to let it all hang out.
Most days I feel like crap. I am always super exhausted. I don’t get much quality rest. Even when I nap it is restless. I rarely stay asleep for more than two hours of a time. I have horrible night sweats and hot flashes throughout the day. It seems I am either cold or hot – no in between. I have horrible headaches every day. I almost always feel short of breath. I cough when I laugh (which sounds funny – it really is not funny at all) and it is a painful cough. It makes be not want to laugh. I don’t use my cane around the house because it is a pain, but I can’t go out to the store without it. The little bit of walking up and down the aisles at the grocery store wear me out. While my tailbone is getting better, I am still on a lot of pain. I only have one chair and pillow where sitting for any amount of time is comfortable. I use a rubber cushion to help be sit in the car or on hard seats, but this is only comfortable to 20 minutes max. Walking, standing for longer than a couple of minutes and bending over are painful still. It is not the sharp pain from before, but an ache that won’t go away.

The tingling in my left arm and leg has increased and I seem to have it all the time and it not just a numbness, but a painful tingle that radiates from my fingers up my arm and my toes up to my hip. I have been having a lot more joint pain and between the shortness of breath and the painful joints, walking up my parent’s stairs is very painful, yet I find myself doing it several times a day – a lot more then I should. My memory is awful. I sometimes can’t remember was I was doing half an hour ago. Forget knowing what movie I watched the night before. I struggle to find the right words and if it is not written down, it does not happen. Most of this has been happening for a long time, and I have learned to function the best as I can with it, so I do not bring it up.

Above I talked about the physical stuff, but did not even touch on the stuff I am dealing with mentally and emotionally. Moving in with my parents was hands down one of the hardest things I have ever down. It has been a huge adjustment losing my independence, giving up my house and getting it ready to sell. I miss driving, I miss sitting alone in my condo and reveling in the quiet and doing whatever I like whenever I want. I miss being able to go out at the last minute if I feel like it whether it be a movie or starbucks. Everything has to be pre arranged and I have to depend on someone to get me there. Going through my possessions and sorting them to be given to friends, charity, garage sale and what I am not ready to get rid of has been emotionally taxing and very painful.

Then of course there is the emotional toll the disease is taking on me. My health is declining every day. I see it even if most people don’t. I have been facing my mortality for a long time and in many ways have an acceptance of it, but I still grieve everyday for what I have lost and how much I hurt. I am depressed and between feeling like crap and feeling down there are many days I want to stay in bed. Quite frankly, I am sick of being in pain and not being able to live my life the way I want. I am making the best of it, but that does not mean it is not hard and it does not hurt.

I don’t think most people really get what I am going through and I guess it is my fault. When asked how I am doing, I tell people that I am hanging in because I am not sure they really want to know the truth. So I have not given my friends and family an opportunity to know what is going on and how to support me.

I am going to try to much better about sharing what is truly going on, but I hope my friends and family will be able to realize that I am really hurting, physically, emotionally, mentally and spiritually.

Sunday, April 11, 2010

When hope is scary

A couple of weeks ago Grey’s Anatomy had an episode where a terminally ill cancer patient is asking her doctors for physician assisted suicide. As you can image this was an emotional episode and very controversial. One of the doctors was against this and tried to persuade the patient not to do it. The doctor felt that the patient should never give up hope and there were other options then giving up. I could identify with this patient. I don’t want to die hooked up to all kinds of machines, on a ventilator and having my death be dragged on. I don’t think this would be good for me or my family.

There was once scene that really struck a chord. The doctor that was against it came in and asked the patient why she was so determined to die. Here is her response.

“Maybe you have to be dying to understand, but there is this thing that happens where death stops being scary. What starts being scary is hope, because it is not true. Even if they found a cure for cancer tomorrow, it’s too late for me and hanging onto hope may make you feel better, but it just makes me feel alone.”

I don’t think I would ask for physician assisted suicide, but I stopped praying for a cure a long time ago, my prayers turned to one for time. It was very frustrating for me when people around me insisted that there was still hope and that I should not give up and did not like it when I talked about death or even had the nerve to make jokes. Although not meant to be, these words were very hurtful to me. I am not giving up, I have chosen to live. There is movie (“Heaven on Earth”) where a teenager has sarcoma that has spread to her liver and she is dying. One of her options is to continue treatment that might give her more time, but will ravage her body even more. What about the quality of that time? When challenged about her decision to not do treatment, she told she was giving up. She responded with:

“I am not choosing to die, I am choosing to live, I just won’t live as long as you.”

I have spent a lot of time thinking about these two scenes and feel as though I could have written them. I would love to live a long and happy life, but it seems that that is not in the cards. I have come to terms with my reality and to some level I am at peace with it. I know it is hard for others to accept my diagnosis; it can make them uncomfortable, make them think about their own mortality and often leaves them without knowing what to say. If I could give any advice to the friends or loved ones of someone with a life threatening disease, I would tell them to respect the patient’s wishes. Even if you can’t understand how they feel the way they do, it is not a choice that came easy to them.

I have lived longer than expected and I contribute that to three things. First was my decision to stop chemotherapy - I believe it was weakening my body, gave me poor quality of life and I would not have survived the last year if I have continued it. Secondly the weekly acupuncture – My practitioner has focused on alleviating some of the side effects of the cancer, whether it be supporting lung function, treating the headaches or just boosting my energy. I notice the difference in how I feel after treatment. The third and maybe most important thing is my attitude. I have chosen to make the most out of my time. I live in the moment and try not to get dragged down by what is happening to me. I have really crappy days, but there is always something good to be found in those days. Getting caught up in the “Why me?” and “Life Sucks” mentality just takes away from the little time I have.

I can’t say I love my life, but I can say that I am relatively happy and I love my perspective on life.

Wednesday, April 7, 2010

Gave up dying of cancer for Lent

Well it is after 3am and surprise, surprise I am still awake. It has been a couple of weeks since my last post, so I think I failed on my goal of posting weekly, but I will continue to strive for a post at least once a week. I also want to let you know that my shift key is not working and I am waiting for Dell to send me a new keyset. I have just now realized how often you use the shift key with your right hand. Please forgive me if I do not capitalize correctly, I am a little too tired to notice.

Last time I wrote about my birthday reflections and received feedback that people really enjoyed reading them, so I have a few more reflections I want to share.

In some of my posts I mention my faith. I don’t always get to church often, mostly because mornings are very tough for me, but that does not reflect on how important my faith is.  I believe my faith has helped me get through these past few years. My two favorite seasons of the church are Advent and Lent. These are not to be confused with Christmas and Easter, which are very important in the church year, but it is the preparation for them that is most important for me. Advent and Lent are not only about preparing for Christmas and Easter, but about focusing on the journey towards these two awesome celebrations.  I have always said that getting there is half the adventure and we should not focus solely on the destination.

I try to get all of my shopping done prior to advent so I can concentrate about what the birth of Christ means to me. I try to spend time during lent reflecting on Jesus’ own journey towards his death. One could say that I have been on the same journey the last two years and my own lent has lasted more than 40 days. I think Lent is most commonly known for giving things up. In the past I have given up things like swearing, chocolate, soda, vending machines, pizza, sweets, beer, happy hours, and eating out. Except an improved diet I am not sure what if any benefit giving these items up has done for me. Sometimes I have been successful, but sometimes knowing you gave something up makes you crave it even more and I have cheated. Years ago my priest sad that Lent should be about removing the things in our lives that causes distance in our relationship with God. She also said maybe we should take this time to consider what we can do for others. If we do give up the afternoon candy bar from the vending machine, we should think about donating the money we would have spent on the candy bars to a charity. I have also taken things on during Lent including daily meditation or bible study. Sometimes I think these might strengthen my relationship with God more than giving things up.

I do have a point to why I am talking about religion and the virtues of lent. For the past three years I have been expending so much energy fighting cancer that I have not had as much time, emotional capacity or desire to focus on my spirituality as I would have liked. Not to mention that fact that I was royally pissed at God that I had cancer. The idea of giving up something for lent the last two years was laughable. The first Lent after diagnosis I was still in chemo and I could not get behind giving up anything I enjoyed or made me feel good considering that most the time I was miserable. Last year I was pretty sure I only had a few months to live and I basically said life is too short to make any more sacrifices than absolutely necessary.

On my way to Ash Wednesday service this year, my friend and driver asked me what I was giving up. I flippantly replied that I was giving up dying of cancer. I had not really thought about doing anything for Lent and this was just another case of me being a smart ass. However, I started thinking about that comment during the service and for several days later. Why shouldn’t I give up dying during lent? Having terminal cancer certainly has put a hardship on my relationship with God. Plus, I have found that having something to look forward to in the future helps me stay strong and focused and encourages me to strive to stay alive to do it.

So this year I officially gave up dying for Lent. Of course having the sense of humor I have, I made a number of jokes about this like: “I can’t die till after Lent or at least till Holy Week.” or “Dying on Good Friday has been done before and gives a lot of expectation of resurrection.” Another one is “Heaven help us if I am the daughter of God, the chosen one.”

Not sure if you noticed, but I tend to make more jokes about the things that I worry about or spend a lot of time thinking about. I try not to, but I do think a lot about dying these days and when that will occur. I was determined that it would not happen this spring, so giving it up for Lent seemed like a good thing to do. As I was sitting in church during the Easter Vigil service, I thought to myself “I did it – I am still alive!” “Wow, for the first time, I gave something up for Lent and never cheated or even had the desire to cheat”. I was so thankful that I was still alive as that service, that for the first time I felt like God answered my prayer about having more time. Then I thought, “What do I do now that Lent is over? I am certainly not read to die today so do I continue giving up dying. How long can that last?

I don’t think it is practical for me to say that I am giving up dying of cancer. What I have given up is being the person who is dying of cancer. I am the person who is living my life even though I have a terminal illness. Instead of worrying about when I am going to die, I am planning things I want to do in the upcoming months so I have things to look forward to.
These are the things I have so far:
May - Ovarian Cancer Survivor Retreat in Montana at Camp mak-a-dream.
May – visit from my sister and her family. Spending a lot of time with my nephew that lives in MO.
June – I have decided to participate in this year’s Relay for Life. Please consider joining my team or making a donation. Here is the link to my site:
July – Taking a cruise to the Bahamas with my oldest sister and husband, 3 of my adorable nephews and my parents. 

I also want to set up one day a week that I meet up with a friend for a visit and grab a coffee, drink, food or just hang out. My current theory is the longer the list, the longer I have to stick around.

Does anyone else have any ideas of things to put on my list of things to live long enough to do?