Tuesday, December 29, 2009

Do I hear someone coughing or a seal calling a mate?

I am in the midst of a bad coughing fit. I am so tired and crawled in bed to try and get some rest. As soon as I laid back down I started coughing. It is a terrible sounding cough - a cross between a hacking cough, a wheeze and a seal mating call. One of my friends asked me if I arch my neck like the seals do when calling to a mate.

It is so hard to breathe when I get these fits. I often cannot get enough air in between coughs that I end up gasping for air. It is terrifying. Tonight I heard a whistling sound coming from my lungs as I exhaled. Geez – I am on 37 and sound like an old lady with emphysema. Sadly, it is becoming the norm that I am up coughing in the middle of the night. I try to lay propped up with tons of pillows. Just tonight my parents were changing my sheets and my dad commented on how many pillows I had on my bed and asked if I needed them all. At the moment I am using 8 pillows; 1 breathing wedge, 2 body pillows, 4 regular pillows and a small pillow to give my neck extra support. Good thing I have the whole queen bed to myself with the exception of teddy, but he is used to cuddling.

I am feeling so old these days. I am tired all the time, walk with a cane, in the middle of menopause, have minor incontinence, walk really slow, get worn out just by grocery shopping, have no short term memory, gained a ton of weight, and cough all the time. I ask you “What good is dying young if you have to experience old age while you are doing it? Aren’t dying cancer patients supposed to be skinny as a rail and look like a holocaust victim?” I look more like the Pillsbury dough boy.

As I got into bed tonight I started reflecting on the past year. It has been a very hard year, but in reality this whole year has been a gift. I was not expected to live through the end of the year. In fact, at the end of last year the doctors said based on my condition at the time it could be only 3-4 months. This was a year longer than I was given in 2008, so I am doubly pass my expiration date. One thing I did right in 2009 is lived for each day and made the most of the time I had. I made the tough decision last December to stop treatment and concentrate on quality of life. This was probably the best decision I have made in my entire life. I believe that if I had continued treatment, the chemo would have killed every cell in my body until I had no more to give and I don’t believe I would still be alive. I whole heartedly believe that stopped treatment, going to acupuncture and a positive outlook has given me the last 12 months.

It has not been easy and sometimes I wonder how much longer I will have to endure all this crap. Don’t get me wrong, I am not giving up or want to die, but sometimes I wonder if I have fought long and hard enough and maybe it is time for me to move onto the next phase of my life.

I don’t spend a lot of time each day complaining about how I feel or thinking about dying, but lately between losing three friends to cancer and continuing to feel like shit, I sometimes daydream about what will happen next.

I think about what heaven will be like. For me I think it will be a continuation of my life here on earth. I picture myself in the mountains in a cabin, doing pottery with a whole pack of golden retrievers around me. I have always dreamed of a cabin in the woods and can close my eyes and picture it. The only change after these years is there is a big screen TV over the fireplace programmed to the “Earth” channel and I will be able to turn it on and be able to watch my family and friends. These thoughts are very comforting to me, because not only will I be fulfilling some of my dreams, I will be without pain and can check in on everyone. Maybe being so at peace at what my afterlife will be makes me yearn for it on nights like this.

I have tried hard this year to stay in the moment. I try not to focus on what has happened to bring me to this point nor the journey ahead. It is hard not to think about death and I think it is an ok thing to think and talk about. I am terrified of the actual process of dying and worry about pain and gasping for air. Death is the inevitable and I have just been given the gift and the curse to know that mine is happening earlier than most. It would be easy to let myself get down in the dumps about what is happening to me and rant about how unfair it is, but that just takes energy away from living. I have been criticized that I do not show that much emotion and can talk about my death, memorial service and legal details without blinking an eye. I have not found the book that outlines the correct way to behave in this situation. I guess some people think I should be sad, depressed, and crying all the time. Believe me I have cried buckets about these things. I have ranted and raged, thrown things, broken glasses and punched walls, and screamed at God, but I am past that now. There was a time where I was in that place, but now I just want to enjoy life as much as possible. I do find I have little patience for people who choose to complain a lot and take life for granted. Hopefully I can show them how to appreciate life for what we have and live for each day.

I have tried hard these past few weeks to not question if this my last holiday with my family. I did that last year and it tore me up inside. I cried all the time and found it hard to enjoy things. However, it is impossible to not think about this being my last Christmas. Instead of being sad about it I am trying to remember the good things – like the look on my nephew’s faces when they opened their gifts and got just what they wanted, or the perfect sound of one of my nephews telling me he loved me or signing Christmas songs. New Years is very hard. How can I look forward to a new year when I just don’t know how much time I have left. I am also very conscious of how my death will affect my loved ones and wishing them a happy new year seems wrong somehow. Maybe what I can do is wish my loved ones an appreciated year. I hope that each one of you can live for today and don’t forget to stop to smell the roses and show gratitude for all that we have.

Monday, December 14, 2009

I HATE CANCER!!!!

I think this is the first time I have written those words. I don’t think I have even thought those words before. Maybe I never wanted to give cancer the power before, but there it is: I hate cancer.

You may be thinking that it is about time for me to hate something that has effected me as much as cancer has. My life and the lives of my family and friend’s has been forever changed by cancer. But it is not my experience with cancer that has made feel this way, it is what cancer is doing to people I care about. On Friday I learned that two fellow cancer survivors were not doing well.

I met Shawn at a Stupid Cancer Happy Hour last year. He was another young adult that was fighting hard to beat this horrible disease. In March I had the privilege of attending his end of chemo party. Two months later he had a recurrence. He started treatment again, but it did not slow him down much. He was very active in cancer advocacy and is Mr. May 2010 of the Colondar. I found out that Shawn passed away today while being surrounded by his family and friends.

The other survivor I met when I attended an ovarian cancer survivor’s retreat at Camp Mak-A-Dream in May 2009. Marcia was currently undergoing treatment, but she like everyone else I know is a fighter. She too had a recurrence in early summer and found out the cancer had spread. On Friday I learned that treatment was not working and they turned their focus from treatment to comfort and have started hospice. From the latest update today, it sounds like her time with us is limited. She is currently at home with her family and spent the day enjoying the holiday decorations.

I met Shawn the day I found out the cancer had returned with a vengeance and when I met Marcia I had stopped treatment and was focusing on living life to its fullest. From the moment I met both of them I knew I was going to die and it was just a matter of when. Both Marcia and Sean were doing well and it never occurred to me that one of them might not win against this disease or event that they might die before me.

I have accepted my death, but I can not accept the death of people I know. It is just not fair. There is so much more that I want to write about this, but it is just too much for me to write anymore tonight. I thank you all for your continued support and prayers and ask that you send prayers to Marcia, Sean and their families.

This reminds me of this song.

“What about me?” By Shannon Noll

Well there's a little boy waiting at the counter of a corner shop
He's been waiting down there, waiting half the day
They never ever see him from the top
He gets pushed around, knocked to the ground
He gets to his feet and he says

[CHORUS:]
What about me, it isn't fair
I've had enough now i want my share
Can't you see i wanna live
But you just take more than you give

Well there's a pretty girl serving at the counter of the corner shop
She's been waiting back there, waiting for her dreams
Her dreams walk in and out they never stop
Well she's not too proud to cry out loud
She runs to the street and she screams
[CHORUS]
So take a step back and see the little people
They may be young but they're the ones
That make the big people big
So listen, as they whisper
What about me

And now i'm standing on the corner all the world's gone home
Nobody's changed, nobody's been saved
And i'm feeling cold and alone
I guess i'm lucky, i smile a lot
But sometimes i wish for more than i've got
[CHORUS]

Here is a link to the video.
http://www.youtube.com/watch?v=kqyIwZpr5y0

Monday, December 7, 2009

Trying to gain some excitement around the holidays.....

It’s three in the morning and I am wide awake. I had a short snooze while attempting to read my book earlier and now I am wide awake. I did not even get a nap today. For some reason it is days like these when I am busy and do not get a chance to take a nap that I have trouble falling asleep at night. Maybe I am over tired. It could also be that my mind is going a thousand miles a minute. I am feeling anxious, but not exactly sure what about. I have been having more anxiety lately. I can usually ignore it during the day, but it is hard to ignore in the middle of the night, when the house is quiet with nothing to distract you from your thoughts.

Today I decorated a Christmas tree. My parents have this small tree that usually put in the kitchen with cookie cutter ornaments and gingerbread men. This year they allowed me to decorate that tree with my ornaments. I have had a tree in my condo since Christmas of 1999.

I stated collecting ornaments even before that and now have quite a selection. I have ornaments generations old, handed down by my mother’s great grandmother. Unwrapping my ornaments and placing them on the tree is like a walk down memory lane. I have a memory or story for each of the ornaments and they all have different meanings. As a chef in early adulthood a former life, I have several related to cooking (a pig dressed in a chef jacket and hat, reindeer made of cooking utensils, and a Santa on a rope of garlic). I have a whole collection dedicated to my love of nature, hiking and camping (hiking boot, back pack, tent, and hiking Santa). I also have ornaments that I picked up during many of my trips to Aruba, Disney and other places. I can’t talk about my ornament collection without mentioning the dog ornaments. As many of you know I am a golden retriever lover. I have at least ten ornaments depicting golden retrievers frolicking. And I have a couple very special ornaments for my dog Oscar. My friend Sara helped me decorate the tree and with every ornament we picked up I would tell her who gave it to me and what it meant something to me.

This was just another wonderful reminder that I have had a rich life and am very blessed. I am not one that is defined by my possesses, but it is nice to have something that when you look at it takes you back to the moment you received it, purchased it, or however to came to have it and you remember what you felt when you first saw it and what reminds you off.

I honestly did not think I would see Christmas this year. In a way I made my goodbyes to the holidays last year. Christmas and New Year’s was very tough for me last year. I had decided to stop treatment and was processing the prognosis the doctors were giving me. Advent is one of my favorite church seasons and last year I did my best to enjoy it, but in the back of my mind was voice that kept saying this is the last time you will have Christmas with your family, the last time you decorate your tree, the last time you get to share your nephew’s excitement about Santa on Christmas eve and then watching them enjoy their presents on Christmas. It was hard to celebrate New Year’s because I had no idea how long I would be alive. I went to Christmas Eve service at my church last year and I cried all the way through it. It was not dainty tears running down my cheeks, it was body wrenching sobs.

I am amazed (and so are my docs) that I am seeing another Christmas and I do see this as the blessing it is. But it is a mixed blessing. I have the joy of sharing this time with my family and friends, but I also have the voice back in my head reminding me this is most likely some of my last experiences. I know that anything is possible, especially when you take in account that I am doing fairly good I was not expected to live this long, but I know that I am dying and I know with every cold, breathing attack, and increased tiredness that each day is just one day closer to the end.

The last year has been about quality of life and make sure that I do only what is really valuable to me and to do as many things that make me happy as possible. I am living life for each day and all that it brings. Some days are bad, but many wonderful things happen too. I just need to remember these next couple of weeks to live in the moments. To not think about whether is the last time I will see someone or do something, but to just cherish the moment and live in the present.

On a somewhat unrelated comment, I have been getting a lot of feedback from people about the blog and have been amazed how many people are reading it. I would love it if you would leave a comment and let me know what you like about the blog or if a posting spoke to you in any way. This blog may be about me, but it is also about all of you who are a part of my journey and if there a topic you would like me to talk about or questions you have, please feel free to ask. Thank you for your support.