Love Jacqueline

We saw the doctor last Monday and received the dreaded news that there isn't much left that can be done. There are two possible treatment options that may give me a few extra months but they will could really damage my quality of life and don't offer cure, just maintenance and a bit of time - so it's a matter of quality vs quantity. He says without anything, it's likely a matter of months - not years, but who knows?

At this point, I have decided that I want to live my life to the fullest while I can, one day at a time. I want to spend my time with my family and my friends. I want to continue to go to concerts if I can and maybe go on some trips within Canada. I want to read and listen to books, I want to watch good tv and movies, I want to colour with good markers in cool design books. Finally I want to spend time talking and laughing with the people I love. I do not want to do more chemo that will cause hair loss and nausea and extend my life by a few mere weeks/months, none of which I will be able to enjoy very much.

The big question is: Am I giving up?

I have been dealing with this since May 2010. I had been dealing with the pain of the tumour for countless years before that.  I didn't know it was a tumour, assumed it was a falling arch and Dr's thought at first it was Plantar Faciatis or a benign cyst. Once Synovial Sarcoma was diagnosed, my foot was amputated within a month. I did chemo, and was back at school the following January -  I only missed one semester of school. 

I spent the next 2 years going for check ups that were all clear. Just a few months after the 2 year mark, where I could switch from every 3 month to 6 month check ups, we found out that the cancer had metastasized to the lungs, common for Synovial Sarcoma. Devastated, but determined I started a new job and then went on leave 3 months later for surgery. I recovered and went back to my regularly scheduled life. 

I knew the tumours weren't all gone though, I knew there was more work to be done. Thankfully I had a year and went to El Salvador but then back to Chemo. This was the hard one, I had to live in the hospital for one out of every three weeks and it was brutal. Many of you will remember this.

After I finished chemo, 2014 turned out to be the coolest year! It was filled with concerts and trips and I felt lucky to be alive! When the cancer reared up again this time I knew that it was here for good. Based on Synovial Sarcoma facts and just based on instinct I knew it wouldn't let me have much longer. Still I tried. I did more chemo, I've dealt with excruciating pain and I've tried to do it all with a smile on my face.

I have worked hard, I am not a quitter. I am making a choice to live out the rest of my life as happily as possible with the people that make me happy. 

Cancer is not a fight and I am not losing. It has been a challenge, it has been a journey but in no way am I losing.  Cancer is a bully and it picked me, but I've done my best to stand up to it and not back down.

I have surrounded myself with the kindest and most generous of friends. It is astonishing the things people have creatively given to me over the years, humbling and incredible. I am constantly in awe of the love that surrounds me. That is how I have been able to do this, that is why I am brave and strong because you have made me. Thank you. Cancer is lonely but you have made it much less so. Know with peace that you have made these last 5 years some of the most incredible of my life. 

I am not saying cancer is a gift, I certainly would have liked the gift receipt if it was, but I am saying thank you for supporting me. In big ways and small. Those silent prayers, sending out light and love, I felt that - I feel that. Thank you. The big gestures, you overwhelm me, and sometimes I think it is too much, but I know that's how you express love and I am grateful for that. Thank you for all of the love. 

Everyone who has this cancer views it differently and everyone responds and acts according to how they are able. 

The other day my mom said she wanted to get back to a time where we can just live. We can plan a trip, we can go on walks around fish creek, we can have fun family nights but we don't have to do it all with the cancer lingering above us, wouldn't that be nice?  Another friend put something so eloquently into text that I had to share it. My friend said:

"At the end of the day it's disappointing we are in the "worst case scenario" of this challenge. It's not that I brush this situation off, but rather choose not to define our memories, our relationship, or future memories by the battles you face on a physical level. By all means I will acknowledge the challenges that we both will endure, but refuse to let that dominate the words, the emotions, the time and the image of who you are as an individual. Our relationship will always transcend the physical world around us. I'm incredibly grateful you've allowed me to join you on this journey and I look forward to being there in the next epic episode of our relationship." 

That is how I want you and I to finish things - however long I have, remembering that life goes beyond these twenty some years. 

Wow, I sound really positive and up beat don't I? 

My nurse asked me "aren't you mad?" And I said "No, I am just sad and disappointed" 

I wanted all of your prayers to work, I wanted to be your amazing cancer success story, I wanted to be that local hero that defied all odds.  But at least I have a super rare cancer, it's so hipster of me!  I am sad, but I don't want to be regretful! I have done so much in this amazing life of mine! 

Please be gentle with us. I have made my decision, I know there are many cancer "cures" out there and if you find anything that directly and positively works with Synovial Sarcoma I would love to hear it otherwise it will only cause us stress and the feeling doubt we're not doing enough. 

As for now, I'm not planning on going anywhere too soon!  Thank you again for all of your love and support.  

Love Jacqueline,
Carol, Peter, Tyler, and Jany too