Wednesday, May 26, 2010

The Ride's Not Over

I have made the decision to keep this blog up and writing...because the truth is for me the Yellow Jersey is a metaphor of crossing the finish line. Not sure if it mean the finish line of life or any project we have, but truly it is about giving your all in the meantime. The last year has been another rollercoaster.
Somewhere along the way I made a decision to try to figure out how to live with cancer, as opposed to living my life waiting to die from cancer. The distinction is huge and really it was about trying to find a way to have cancer come 2nd.
That included a decision to monitor a 1.8 cm growth and continue with my plan to celebrate my 50th in Antarctica. Doctors reassured me that I was not putting my life in jeopardy and for once, I could live and have the cancer wait. Huge relief...I was getting the upper hand for a change....or so I thought.
My return in February showed that the tumour was now 2.4 cms through MRI and so the process began to figure out what it was and proceed with the necessary arrangements for removal. The tumour this time was firmly planted on my pancreas....but it was not pancreatic cancer. The doctor was quick to make the distinction as it seems that the pancreatic cancer diagnosis sends a chill up everyone's back and leads to deafening silence.
I was truly up for the challenge until out of the blue the new surgeon recommended a brain scan to make sure that the cancer had not spread any further.
Although I was ready for the battle at hand I had in no way anticipated that the rules would somehow change without prior notice. I know it sounds crazy, as if cancer plays by some standardized rules, but where the hell did the brain come from? How did it become an issue all of a sudden?
I couldn't take any more surprises so I requested a full body scan to make sure that another tumour wasn't lurking somewhere only to be detected in 3 months.
The ULTIMATE good news bad news scenario. The CT Scan found nothing else except the existing tumour we were working on...YAY....BUT somehow in this imaging it wasn't 2.4 cms anymore it was 4.6 and growing rapidly....WTF.
My head was spinning, yet again it was if cancer was laughing in my face. Just when I thought I had found a way to live with it, reality came home. In the interim we lost Bev to lung cancer.
Bev Levitt was a ray of sunshine. She was diagnosed with lung cancer precisely at the same time as my last kidney surgery which was November 2008. I completely didn't see her death coming. I wanted her to survive so lets be honest...I needed her to survive. I wanted the pact we made with Terry last July, to outlive the cancer , to be unbreakable.
Even then we knew it was back but Bev looked strong and with Mark at her side we all seemed invincible (cancer laughs again).
Bev's unveiling was on May 9th, Mother's Day, and 2 days later they wheeled me in for my surgery. My emotions were raw...the 5th surgery in 6 years. You know you are in the hospital too often when you end up with the same nurse from 1.5 years ago and they remember you , and it only makes it worse that I was in a completely different hospital. Will this be my road to infamy? Jim not only remembered me but the details of my previous surgery....Oy Vey....We have to find a different way to meet.
The rest is mechanics and I am home recovering very nicely....never as quickly as we would like but surrounded with love and good friends.
This latest round brings me back to the fight for a proper Psycho Social Oncology program at the MUHC. I realize that this battle needs to be waged and I am not prepared to give up. To those who are ready to join me in this battle your help and support are more than welcome. Knitting needles in hand I start to create the safety net to which I believe every cancer patient and their family is entitled. So bring your needles and join next posting will be about the vision for the future. Like I said for me the Ride's not Over.

No comments:

Post a Comment