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

Back we go.....

Back we go.....

Today after weeks of trying to get this pain under control, Jacqui is going back to the hospital for a few days to try to get to the bottom of things.  So do we want this?   Not at all, but trying to figure this out at home isn't working either.

So in addition to that we're just trying to:

Carve a tunnel of hope through the dark mountain of disappointment.

Martin Luther King Jr

Chronic Pain

Hi,

We said we would update you once we had the results of the CT scan and then frankly, we forgot to! Oops! 

The Doctor sat down that Monday a few weeks back and said "I have good news!"  The tumours are stable, they are responding to the treatment. They haven't shrunk and they certainly will never go away but they are stable. This means that I am able to continue with this treatment for the time being and we will do another CT in a couple months to track its progress.

It was pretty incredible to hear the words "I have good news" come from one of my Doctors. It was also interesting to think about what "good news" has now become. It wasn't "they are gone" or "they are shrinking" the good news was that things had stayed the same. The perspective of what "good news" is/means has changed for us a lot in the last almost five years. I did chemo that week and I am doing chemo this week. Chemo is fine, it is a 1/2 hour and the biggest side effect for me is that I am tired for a day or two. I don't mind doing chemo.

The big issue lately has been pain. I was in a lot of pain before Christmas and was giving a regime of medicines that really helped to combat the pain. I felt wonderful, there was zero pain for weeks. One of the medications I was on was a steroid and it was starting to affect me emotionally. I was becoming over sensitive and quick to anger - essentially I was experiencing some "roid rage".  The Doctors said that steroids are great for combatting inflammation but after awhile the side effects outweigh the benefits and this was becoming the case. So they began to ween me off the steroid and the pain surged in a new way and in new spots in my back. I have since met with the pain clinic. There were 2 doctors and a pharmacist and they listened to my story and the symptoms I have had. They came up with a new pain plan and I have been trying that out this week. It has not been a magical cure. My lower back is in a lot of pain despite all the medication I am on. The pharmacist has called a couple times to see how I am doing & make suggestions. I am glad to have so many readily available resources. The great thing about the pain clinic is that they have many options and ideas and it is hard to stump them. If what I am trying doesn't work we will try something else until there is a proper solution. For now I sit with either an ice pack on my back, my heating pad, or my fancy new shiatsu massage pillow. They all help in some way but the pain is chronic and it is exhausting. 

We haven't had the chance to escape for a trip yet but maybe in the spring. For now I am just really needing this pain to get under control. It is frustrating and causes me to miss out on things and I HATE missing out on fun things! 

For a number of reasons, we have decided not to share the blog link via Facebook anymore. If you wish to receive updates you can automatically have updates emailed to you if you fill in the "Follow by Email" spot at the top of this page on the right (on the web version).  We will also update our statuses but we are no longer going to share the link via Facebook.   We love your comments and encouraging words (although we're sorry we can't always reply to all of them) and there is a place below where they can be left or you can also email us directly at carolsunshine4@gmail.com .

So that is the latest, 

Thanks again for reading and for your love and support! 
Jacqui