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.


John and Jessie said...

Hi Allison,
I have followed your blog since last year. Along with many others I'm sure, I have appreciated your overall bright outlook in the midst of deep struggle. I myself have endured illness for the past 2 years, and while I'm not facing death, I do relate with you in many ways. I would really like to exchange a few emails with you. Would you be up for that? If so, you can email me at merigold80@yahoo.com.
I am praying for you, dear lady. I won't stop.

Sarah Feather said...

Hi Allison:

I just discovered your blog and have only read a couple of posts so far, but I must say your "Coughing" post really struck me. I also have ovarian cancer, and I'm on round 3+ of fighting it (2 major surgeries, 3 minor ones, three rounds of chemo, 2 clinical trials, now on Avastin and it seems to be working.) While my tumors (inoperable in pelvis and now spread to lungs) are holding steady with this treatment, I know it's only a matter of time before I have to stop the Avastin (high blood pressure or kidney failure will probably get me sooner or later) and I'm always wondering about how I'll handle my end-of-life march. You set an amazing example.

I appreciate your matter-of-fact attitude towards your condition; I've always had a "no-cry" zone in effect when people come to visit me. I have definitely cried many times about this, but don't have time in my life for pity, "why me", etc. The silver lining of cancer seems to be the laser focus it gives me on what the really important things are in my life, and spending every minute I can where and with whom I am happiest.

I wish you peace and comfort in the new year, and I'd love to read more. Keep your sass - it's awesome to find another fierce ovarian chick.


Joan said...

Hello Allison-

I know you feel sensitive about how you look - you seem to be holding onto some sort of expectation that you don't look 'right', or the way you'd choose to look....but when I asked Kyle how you looked at Xmas eve service, he quickly responded that you looked really, really good !!! I think it's your spirit that everyone really sees (as it should be). So try to relax - don't 'should' on yourself - and keep up living in your moments...we understand how tough a ride this must be for you, but your blogs help us all to see and feel your incredible spirit - what a gift !

Big hugs-


Adelina & Dori said...

Hi Alli!
You are never far from my thoughts. You have passed on an amazing gift to others and it is a privilege to read your blog. I am overwhelmed by your ability, even in the face of extreme circumstances, to find humor and give me a chuckle. I love you for that!
In this new year, I wish you the same peace, comfort, and strength that you have imparted to all those who read your inspiring words.
With Love & Hugs!

Kris said...

Hey Alli,

I had to read this blog, go away for awhile and then come back to read it again and write to you. I guess I had to allow myself to absorb the depth of what you had to say and how it applies to the rest of us, as well as to you. I continue to be thankful that our paths crossed and want you to know that I, the older one, have learned a great deal from talking to you and reading your blogs.
I absolutely love the image of you in your cabin with the retrievers around you and the big screen tv that allows you to check in on people still living in the "life as we know it plane."
It is a blessing and a curse for sure, to have intimate knowledge that your death is for sure, and I think you are handling the knowledge with equal, and appropriate, amounts of humor, tears, anger, and reflection.
Always thinking of you with love and hugs,

Pat Steer (Gaelen) said...

Alli - good wishes for a new year of appreciation, I *like* that approach. I won't tell you to be strong or be positive or let it out, because you are already doing exactly what you need to be doing. And like others, I feel privileged that you're willing to share those moments with the rest of us.
My strongest thoughts, that you find the harmony in your expectations.