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:   http://main.acsevents.org/site/TR?px=15221509&pg=personal&fr_id=24972
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?