October 28, 2011

Never say Never!

I started this blog when I made the decision to discontinue treating my cancer and was given 12 to 18 months to live. I was looking for answers to the questions, "What happens now?" and "What do I do now?"  I couldn't find much on the Internet so I thought that I would use my own situation, through this blog, to help others in the same situation.

Deciding to stop treating a terminal disease is not an easy decision to make but I felt good about making it.  There is no cure for my cancer and I have a history of significant side effects from any of the meds I could take.  My quality of life was already compromised due to the pain of my bone metastases and the tremendous fatigue I was experiencing from my pain meds and the cancer itself.  I didn't want to continue taking treatments that further compromised my quality of life with no potential for cure.  Give me something with any reasonable chance of a cure and I'll be all over it but, otherwise, I wanted to focus on enjoying the time I had left.

I have been doing that, with the belief that I would be "okay" until perhaps the last few months of my life.  But as I have always known, the cancer journey is full of twists and turns and it ain't over 'till it's over.  There was always the chance that something could happen to compromise my quality of life before those last few months.  Well, that has happened to me and I am compelled to do what I can to try to meet my main objectives:  to maintain my quality of life; to be able to do things to enjoy life; to be able to walk my daughter down the aisle next year.

My cancer has continued to metastasize/spread to my bones.  Thankfully, it has not yet spread to any of my organs, but my lower back (specifically, my sacrum) is becoming significantly involved.  And I am terrified of the increasing possibility of it breaking (what is called a "pathological fracture").  Depending on where and how it breaks and what nerves are damaged, I could be severely crippled or worse.  I can't let that happen.  I won't let that happen.

So I find myself once more exploring various treatments including radiation, surgery, drugs, or combinations thereof.  I hate it.  I hate the decisions I will have to make.  I hate the side effects that I will have to suffer through.  I hate the limitations it will place on what I can do.  I hate the added stress of wondering and hoping and the disappointments that may come.

But I hate more the idea of spending a good portion of my remaining time on my back or the idea of not walking down that aisle.  It is not about survival.  There is no cure.  It's about quality of life.  Something that I thought I had wrapped around me to keep me going until......

I've always known that there is nothing simple about life and certainly not about dying.  But I still have hope.  Hope that it will not be as bad as it could be.  Hope that I can continue to find joy in each and every day.  There is always hope.

I will continue to write about all the things I planned to write about, perhaps with some new perspectives and new insights.  I will definitely have a lot to say.  Wish me luck and continue to read.

Thank you all for your kind thoughts and words.

P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news.

2 comments:

Lori Hope said...

Doug, I hate that you are having to go through this, through it all, especially the pain and fear, feelings we all know, but perhaps not to the extent that you do. And I love that you have the strength to say "never say never" and the courage to change your course, making difficult choices.

Most of all, I love that your hope lives, and that it tells us that there is always hope for something...that giving up treatment doesn't mean giving up hope...that giving up on refusing treatment doesn't mean giving up hope.

Keeping you and your bride and family in my thoughts and heart always,and sending lots of love,
Lor

Linda (bear) said...

Hi Doug,
As always I am thinking of you from the other side of the world, and wish you luck with your decision making. The road you are travelling is so hard, and that you choose to share your journey with strangers like me is admirable, and I feel priveleged to be able to share it by reading your posts. God Bless you.
Linda B