NED Today, Hopefully Tomorrow

On June 5 I heard the words I have been dreaming of for a year. A resident oncologist walked into the room and she said  “regarding your scan….there is no evidence of metastatic disease.” That means NED (No Evidence of Disease). It was confirmed Dr Tequila who beamed like a proud new parent.  That is the best result you can get when you have had metastatic cancer. You don’t ever get to be “in remission” or “cured” because it’s considered incurable. But you can out lie the odds and get NED. I’ll take NED and hopefully keep him as my bedfellow for a long long time.   Jeff never doubted we’d get there. He always said “the next scan is going to be NED.”  

Other good news was that Kadcyla had just been approved by BCCA so should I need the next HER-2 medication, it will be fully covered. No fight needed. Though Dr Tequila fully appreciated the fuss I’d caused the BCCA with my advocacy efforts.

This time last year I was embroiled in the biggest battle of my life - kicking metastatic cancer ass and getting my life saving medication funded. I had dozens of liver tumours up to 15 cm and involved lymph nodes. Surgery was not an option because all parts of the liver were involved. The best I could hope for was to slow it down and manage it. Well I took on a brutal 9 rounds of slash-n-burn chemo followed by a lifetime of targeted chemo. Unfortunately I have some residual neuropathy - numbness in my fingers, pain in my feet, lack of sexual response, fatigue and bone and joint pain. Plus the nausea and fatigue caused by my ongoing chemo. But that’s the price of NED and I’ll pay it - double if needed. 

When Jeff first asked me how I felt I said I envisioned this humungous wave of all we’d been through over the last year. Make that 3 years. Well it almost sank me. I had a huge panic attack at nap time and some wicked nausea - thanks chemo and my poor choice for a celebratory lunch - onion rings and a burger. No wonder I had nightmares. Thank goodness it was short lived and I truly felt like celebrating. And still do. 

For the last 6 months I have been working on “getting on with it.” Trying to process all that has happened. Feeling lost and heartbroken about everything. I was on a healing day retreat at Callanish when during a relaxation/meditation I started crying and couldn’t stop. I couldn’t even tell anyone at final “council’ what was going on - I just sat there with tears running down my face. All I knew was that my heart felt broken. And I feared nothing could heal it. I couldn’t appreciate how well my treatment was going. I couldn’t feel joy at the small things in life. I didn’t fully believe Jeff when he assured me NED was coming soon. But I wanted those things. Desperately. I wanted to be that cancer patient that feels that cancer is a “gift” and learn to appreciate every beautiful moment of life. I wanted to feel “reborn” and like a butterfly emerging from it’s cocoon. But that’s not me. I am more on the slow boat to China when it comes to healing. 

For months I’ve been working through the worst of it in Art Therapy and meeting with an excellent psychiatrist. I feel OK. Really OK. Like I don’t have cancer anymore and I want to spend more time living the non-cancer life. Jeff is helping me slowly increase my activity, recommending rest and pacing - he’s a better OT than me most times. He’s supporting me, like always, when I can’t “pull it together.” Pretty much doing everything around the house so I can take the time to heal. I resolved the loss of my old job. I started working on a new role as an OT. It will take some time and energy to develop. I don’t feel in such a rush to resume work and I’m OK with being semi-retired now. 

We actually started celebrating NED ahead of time. The whole family went to Mexico with dear friends in early May. For the first time in 3 years, I lived a week without cancer being my constant companion. It was all about pleasure and ease and companionship and fun - even the crazy long waits between flights. I can count on one hand the times I thought about cancer when I was away. 

I still have moments that pierce my heart.  When a friend has a recurrence or dies from this nasty disease.  When I think of the future and fear the cancer returning. That I may not be there to enjoy certain moments. Like seeing my daughter in the advanced Vibe dance group, watching Lucas come into his own at high school, becoming a  grandparent, retiring with Jeff and road tripping with our small RV. I know that a long life is not guaranteed for anyone but it’s difficult living with the reality that mine could be shortened by cancer.  However thanks to the work I’ve done and the support I have from my family, friends, neighbours and community I can try to move forward.

Today I am NED. Who knows about tomorrow. But today I am NED.