I stopped writing regularly in the blog just before the beginning of the summer. I was about to be done with the wocko-socko chemo and the indications from the scan mid-treatment was that the chemo was working and that the cancer had been pushed back. I had the idea that once the chemo was over in July that I would have tons of energy and a great summer hanging out with my kids and enjoying Vancouver in the sunshine. That's not exactly what happened. The July scan was the same as the April scan meaning that (a) the disease had not progressed and/or (b) the last 3 rounds of chemo did nothing. I just couldn't bring myself to post that news. I did not want to admit how profoundly fatigued I felt and how bereft of life force. I had,had the intention with the blog to tell the whole story about my experience with metastatic cancer but I just didn't want to admit how low I was feeling. The wonderful Vancouver summer happened but I mostly looked at it out the window. I was told that it is natural for it to take about 6 months to bounce back from chemo but I could tell that there was also disease progression not just post-chemo blues at play.
In the last few weeks I have started on a new oral chemo, narrowly missed needing to have fluid drawn from my lungs, experimented with close to a dozen meds to manage pain and other disease-related symptoms, have experimented with taking as few of those meds as possible as my body railed against the toxic accumulation from all that I was ingesting. There were some nights that I wondered if I would wake up the next morning and thankfully friends either stayed or were a phone call away. Charlotte and Zack's Dad is going to move back to Vancouver with his wife and baby and it will be great for the kids to have more nurturance nearby. It's tough enough being a teen an a tween without having a mom who is ill and emotional and who still obsesses over what they are eating, what time they go to bed, whether their homework is done and why they don't put their shoes away or do their dishes. Surely these things should not be what I consider priorities right now but it still comes out of my mouth and they quite rightly give me occassional eye-rolls along with their hugs and "I love yous."
Okay, so that was a tough slog of an update for me and undoubtedly for you reading this but as always with the hard times go the silver linings and the best of what love and relationship and community has to offer.
On this Thanksgiving Weekend, I want to send out love-drenched, heart-filled cheers of gratitude to the wonderful people in my life who have knocked through my veneer of desired privacy (such a crock) and who just keep showing up and showing up and showing up for Zack and Charlotte and me. This is not a complete list which underscores just how lucky we are!
Parents of Charlotte's friends are covering all the carpooling for school and her dance classes. Parents of Zack's new hockey team are pitching in to cover rides to games and practices that his godparents can't do. We are the recipients of home-cooked meals and sweets several times a week,organized by my wonderful friend Esmeralda, and cooked by women who already have crazy chock-a-block filled lives of kids and careers and mates thrown in for good measure. My mom is lovingly demanding to help out no matter what....thank you Mom. My beloved GP of 16 years came to tell me in person that she has replaced herself in her family practice to take on a new post. Though personally sad for me, I am so delighted for her. The kids and I are now the very lucky and grateful recipients of her farewell gift--the name and number of her housekeeper who was interested in working more hours. Dolly shows up many days every week to help me sort out my messes, bring order to my life and showers me will love and good cheer. Cousin Karen, who with boundless energy and good will is keeping us in groceries and is charming Sadie with daily excitements of beach or park or woods. Kelly who acted like her recent Vancouver visit--during which she filled out freezer with over a dozen much loved soups--was not less fun than our New York trip that we had supposed to have been on that week. Our daily chats--especially the cancer-free ones--are sacred. Carol-Ann, my longtime walk-in-the woods with dogs friend has graciously been dropping my samplers of family favourites for my wonderful carnivore son. To the trifecta of Bhola and Laura and Tom who provide such a profound level of nurturance--we are so grateful for your love-filled safety net. And to the kids' grandfather Dicken's for coming to Vancouver while the Trifecta are away to support Zack in getting to all of his hockey commitments and for being there for Zack and Charlotte.
All the offers and acts of support--named and unnamed--are so welcome. though I must admit that it has been interesting to see my resistance to graciously say "YES" to this profound outpouring of support. I am missing being engaged with life. Open-handed giving and reciprocity are so active and juicy whereas receiving, receiving, receiving, feels so passive. I am so lucky and so grateful for this much needed care and support and I am going to have to find a way to not feel like a waiting-to-die shut-in.
I am in a situation that I wish I were not. There is grief and fear and denial but of course there is so much more than that. If it were up to me, I would be outside on my bike right now glorying in this sunny fall day instead of lazing in bed looking out at it. But that's just today. Right now. Who knows what's in store? I don't feel ready to die and I also don't want to spend whatever time I have to live being on chemo or feeling sick from meds. I am feeling petulant about how much I am feeling like a full-time cancer patient. It's really dull. I am bored with it and with myself. I have a stiff neck from gazing at my navel so much lately. I need to feel more engaged even if I'm brain fuzzy, low energy, not very mobile and don't know how I'm going to feel from one minute to the next.
I'd love to know what's going on in your lives. Stories--trite, poignant and funny--are all most welcome.
Hi darling, I was so happy to see that you had written a new piece for your blog. I know that it was a difficult one to write, however, it allowed you to use your writing skills and access that creative side of your brain. I would love to see you write more often even if it was a bif fat opinion about something that you read in the newspaper or heard on the radio. Although I am aware that you sometimes just do not have the energy, it would be a good diversion on the days that you are feeling up to it. And such a treat for your followers.
ReplyDeleteI am so glad that I got to hang out with you and Zack and Charlotte for a few days. It doesn't matter where we are, I always love getting to spend time with you. New York, frat porch, Granville Island, Saltspring, Hornby Island, Tofino, your kitchen table, the tree house - it doesn't matter where we are as long as we are together. I love you tonnes.
kelly
Yes, please post updates when you are up to it as I wish to hear any and every thing that you have to say, my beautiful mentor and too far away friend. You are very much in my heart and thoughts.
ReplyDelete