Happy Happy Pinktober - Still NED

I never thought I’d say that. Pinktober last year made me absolutely miserable. All that pink. All those reminders.

But guess what? I’m here. I’m still here. Average life expectancy after a diagnosis of Metastatic Breast Cancer (especially in the soft tissues like liver) is 18-24 months. And I’m not just here but remain NED (no evidence of disease). 

It’s been over 9 months since I’ve written. I’ve been waiting to feel optimistic and happy enough to write. Guess what that means…

For some reason the February Scanxiety did me in - big time. After I went for my NED results with Dr Tequila all I did was cry cry cry. Even while trying to celebrate with Jeff, the Cactus Club and a Bellini. It became salty from my tears. And then it didn’t go away. I just become more and more miserable. Fighting to get my butt out of bed. Not wanting to do anything. Crying. Hiding in my bed anxious and miserable, wondering if I actually wished I would die from cancer. At first we just thought it was the lingering scanxiety but by 2 weeks Superman husband pointed out that something was very wrong. For one, I had given up one of my antidepressants for a week when I had pneumonia and hadn’t resumed them. Big bad idea said Superman. 

So I started to fight like hell. Again. Almost as hard as I fought cancer. But it was much harder because I didn’t have the energy left to fight. And it was sticky and yucky.

I kept running. I trained for and completed the 10K at the Whistler Half Marathon in a blistering 100 minutes. Well that’s my “during chemo” speed so I’ll have to accept it.  If there was a category for “during chemo” I may have won it.  But it was a good run. A really hard run - all hills. The half marathon just added a few flat sections - the 10Kers had to do the hardest parts. I had friends cheering me on - my dog buddy Bosco climbed under the security fence to greet me and lick my sweat. 

But I was still struggling like hell inside. Every afternoon hiding in my bed, medicating with anti-anxiety meds. I went back to my psychiatrist at the Cancer Agency, resumed the medication I had quit taking and still, months later I was struggling with severe anxiety at times and depression. I completed a 1:1,  8 week program called the Mindful Way through Depression. Research says that cognitive behavioural therapy mixed with mindfulness meditation is one of the most effective treatments - even when compared to medication. Well I did not find it so. I religiously did all the work and met with the psychiatry resident in person or on the phone weekly. I had to “sit” a few times a day and just be present with my body, my thoughts, my feelings, my aversion then apply CBT principles (look it up if you want). Well sitting with my depression//anxiety seemed to make me worse - I dreaded the frequent alarms reminding me to be mindful for 3 minutes. Every single time all I could feel was the mental and physical anguish of depression and anxiety. No fun. Needless to say I gave that practice up. I believe in meditation but perhaps that type is not for me.

I also tried my art therapy again. Once again it revealed how awful I was feeling. And after a couple of weeks the “snakes” let off and I felt a little lighter but not much. I stopped going as I didn’t have any flashes of images or creativity left in me. Instead,  the idea of an adult colouring book took over. Just stay between the lines. Use colour. Don’t think. Distract. 

I returned to a counsellor I had seen many times in the past and knew me within the first few minutes I sat down. She had the best advice this time around. Don’t meditate inwards. Look out. Count the trees, your steps, notice the world around you. Get out of your head. You are too insightful to spend so much time there. Hmmmmm. Sounded exactly like what Superman was telling me - set goals. 

I also went to see a friend newly trained as a healer and yoga instructor. She did a tarot reading for me and some other things as well as some Reiki. It was at that moment that I saw my potential - I was at the gate I thought was locked, without a key. But it wasn’t locked, it was open and all I had to do was walk on through. All the other cards indicated that I had all the support and resources I needed. And one big element was that I had left something behind me. I knew what that was - my cancer identity. I was living in Cancer-land 24/7 and needed to get out. 

Superman, the kids and I took a few short getaways and I always found that when I was away I felt great. I would forget I had cancer. Jeff and I even went to Vegas and stayed at his Bucket List hotel  - the Bellagio for a long weekend to celebrate 15 years married. Smoking deal. But one can’t travel forever especially without the budget. So as summer lay ahead I feared long days of having to entertain and deal with a preteen and teen so we  made some plans. Week in Peachland with parents and sister. Camping. Trip to Ontario. Things we could afford, thankfully, because of family. 

Camping with a group of friends at Hicks Lake (right before a big forest fire) was fun. Sitting on the beach, paddling, singing Kumbaya loudly after 10pm for our favourite park ranger…… Lots of kids so lots of activity. 

We spent a week in Brockville. This year my mother-in-law almost didn’t rent until I said that we’d love to come and stay with the whole family. It was one of the most beautiful, relaxing places I’ve ever been. We had our moments settling in. But the little island out front was reminiscent of Tom Thompson paintings. The huge ships that went by were so very interesting - I looked them up in a special identification book. We had cousin Reggie stay for a couple of nights then cousin Gilby. Cousins made it much more fun for the kids - especially that newly grumpified teen. I jogged and played badminton, did puzzles and just stared at the river over coffee and apple bread from the Big Apple.

We also got to spend a weekend with the Gordon-Coyles. All 4 boys were home on the same weekend - unheard of with 20-something students. Plus we invited friends Nancy and Peggy for dinner. We had a great time. Despite poor Gilby and a stomach flu. He was thankful for $12 nausea pills for sure. I’m a walking pharmacy…..

We ended the trip with a week at the farm with Grandad Peter and JoJo. Again very relaxing and quiet. We played a lot of Bananagrams, Dutch Blitz (the kids actually started beating me - for real) and other card games plus Lucas learned to dive into the refreshing pond. The highlight was a long weekend visit with the Deacon-Gordons. That meant similar aged cousins for the kids and best bud for Jeff. And the support of another Pink sister/mom of grumpified teens for me. The kids actually stayed up playing games past the adults! Jeff and I took Lucas to Wonderland along with cousin Miles. And despite saying he wouldn’t ride a thing, Lucas took to some of the roller coasters with huge smiles and laughter. And Jeff and I rode the highest, fastest, steepest coasters in Canada. What a thrill. Yes I love crazy rides.

So basically I survived summer. It was long and it was challenging outside of our trips. A constant battle about X box time, lots of driving around, time spent doing daily tasks with my daughter. Next summer my teen gets a job or goes to Camp Temagami for a good month. Or both. 

Apparently many helping professionals are in business because of 14 year old boys! I now know why. There is a switch at 14 and your loving, caring, snuggling little boy starts to pull away and defy you to become a man. But still wants mommy to do everything. Sigh. Thankfully it improved when school returned. He’s keen about doing well, wants to do more of the work himself and is exhausted from hockey camp.  And Sabrina - she’s really grown up this last year. She is helpful, thoughtful, creative and loves school. Please please please give me one easy teen! But even though she’s lovely to spend time with I’m happy she’s back at school and even happier that dance starts next week. Once again she’ll be helping teach the littlest ones and taking 8 classes. 

In the process of working through my emotional upheaval, Superman suggested I find something that would really give me meaning. Bucket-list kind of stuff. I love my kids but I AM NOT a good stay-at-home mom. (Kudos to those who are.) Even with the addition of volunteering to run a concussion group - which I am starting again in Squamish next week. Sadly my days of full time home care OT are likely over. I can’t handle it while undergoing chemo and chemo is for life. So I listed several options and did the pros and cons - volunteering, part time work old job/new job/unrelated job, stay the same, crafts, masters…..did I say masters? Well that one made me shine when I spoke of it. Everyone said so. 

I found out I could do my Masters in Rehabilitation part time, online, on my own time, one course at a time with a project or thesis. One course would take 8-10 hours a week and could be done in bed. So after debating it for a couple of months I actually applied. Yup I did. I want to be studying alongside my kids. It will take 5 years likely. Maybe let me do a bit of research, project work or just make me an academic. Pacing what I do alongside my chemo, family and health. I love school. Like really love school. Doing my masters sits higher on my bucket list than sky diving or travelling.  And it’s a long term commitment. Yes long term. A big big step for someone who doesn’t know if, in the next three months, I’m going to have a cancer recurrence and have to undergo even more aggressive treatment. Or possibly become palliative. Yes that’s morose but plausible. So everyone pray (or vibe) that I get into my masters and that my health stays well enough to complete it.

Recently I discovered something that was on my Bucket-List unbeknownst to me. I spent a weekend at a ranch riding horses for a friend’s 50th bday. The weekend after chemo even. I didn’t miss a beat except I was in bed by 10 every night. I rode every ride, learned to canter, talked deep, meaningful and potty-mouthed with my newfound friends, danced, was a pool shark and brought my roomie breakfast in bed when she was too hungover. The first night I joked I would bug her in her bed. Then when I went wee wee in the middle of the night I mistakenly crept into the wrong bed - not on purpose. I noticed my mistake quickly and returned to mine. But since then we decided the two of us would #doallthethings. So if I could ride, she would. If I signed up to run 15 km, she would too. So much fun. Thanks to Susan Hutchinson for inviting me! 

In terms of cancer I’m still NED. I just saw my oncologist who said my heart scan is good and my labs look great. Ever since February we have not done any scans for cancer. Apparently I’m in no man’s land and there are no indications to continue scanning unless the bloodwork indicates something is brewing or I have new symptoms. Labxiety is much more manageable than scanxiety. Considering the dive I took last time, Dr. Tequila thought it would be helpful if I didn’t have to live in 3-6 month chunks worrying about my next scan. Good call. 

I remain incurable. I don’t really know what my future holds. Chemo often only works so long. I am hoping that I am on the outside of the statistics. And I seem to be more optimistic about it now that I have taken steps to “look outside” myself more, start planning long term and following my dreams. An incurable woman has to fuel the life force. Thankfully I have superman and everyone else there to help me.