Shaker Heights is my home. My people are here. John, Sophie, Grant, Rocky (he’s a person too, really). Our friends. My colleagues. My kitchen. My bed. My life is here.
Istanbul was a great adventure…enough of one to see me through 6 months of brutal cancer treatments for the majority of days I lived there. It was a temporary home, made all the better by John’s company most of the time, Turkish friends, and American friends who came to visit and help me get through chemo. The place has a special magic. The people are uniformly kind and gracious. The language, culture, history, and food were fun to learn and experience. I threw myself into all of it. I had a life there, but it was meant to be a short-term assignment to get me to a more stable place. Mission accomplished. Did I get to remission as we’d hoped? No. For some reason, like many women with difficult ovarian cancer, chemotherapy isn’t all-powerful and healing. Did I return safer and healthier than I left? Well, I was in hospice then, so, definitely yes. In Turkey and when I returned, I was able to eat. I didn’t have pain. I could walk for miles. For anyone who questions whether we in the US have something to learn from other ways of approaching cancer, my case shouts a loud, clear yes.
The treatments in Chicago are not working as well as the treatments in Istanbul did. We know because the cancer marker is rising again, even though I’ve had 3 chemo treatments since we returned to the US on May 18th. Heeding US standard of care advice as an experiment, we agreed to back off some of the drugs I was given in Turkey to protect my bone marrow. Even though chemo given in an integrative way is tolerable, bone marrow keeps the score with increasing difficulty producing the red and white blood cells we need to survive. It was a bet. We lost. Badly. So far.
It’s now clear there was more wisdom in the Turkish protocol, which the Block Center has agreed to follow more carefully and as completely as possible (full-body hyperthermia is not legal in the US…for good reasons? Nah, but it was brutal. I hope it’s not crucial.). Will it stabilize my marker/condition? We hope so. Can I chemo my way into remission here or anywhere? Not clear. How long would that take? Not clear. Would I have gotten to remission by now if I’d stayed in Turkey? Would I achieve remission in another 6 months if I went back? The math doesn’t support those ideas. Am I sorry I came home?
My life is here.
I have less energy. I’m exhausted by this fight, and it is a fight…with ongoing poking, prodding, cutting (I finally got the port), and poisoning, at this point with no definitive end in sight. My body is keeping the score, and we’re doing our best to handicap the outcomes with nutrition, supplements, etc., but we don’t have control over the endgame.
What I do have control over…what remains a choice…is how I live my life, even now. I might have questioned the decision to continue to receive treatment at a point like this before it was me, now. It’s incredible how we adjust to new normals, so long as living seems incrementally better than dying.
Although I was buying time and living an adventure in Turkey, my life is here. The work that remains for me is here. We’re working to get another book out. As parents, we have adult kids – although 18 and 20 are not that old – to admire and help prepare for their own adventures in college and study abroad, and more. My joy is here. Cooking and eating meals together. Snuggling with the dog, Helping one kid with her chemistry, and the other order dorm supplies. Relaxing with John over the latest show in the evening (have you seen The Bear? Highly recommended). I’ve traded the hills of Istanbul for the treelined streets of our block in Shaker, sometimes with friends when I’m feeling up to it. Our life here is interrupted every 2 weeks with 3 days of treatment in Chicago, but this is our life. It’s better than participating via facetime. I know. I’ve done it both ways.
And there are conversations we can have in person that would have been hard…maybe impossible…virtually. Conversations I wouldn’t have thought to have without facing mortality. A chance to talk about the most important things in life, which we put off, sometimes until it’s too late. What I hope for John, Sophie, and Grant. That they live, no matter what. That we find fun and joy together for as long as we can. That they continue with their plans with no regrets. Go to college. Go to Spain. I want what I’ve always wanted: what’s best for them. I’ve made clear that their adventures, fun, and work in the world bring me more joy than anything they can do for me here. Their bodies are healthy. Their worlds are big. I believe I’ll be able to participate in some way, no matter what. I love them completely. I’m not afraid of dying, but I do hope to manage the pain better than the last time I was given over to hospice. Grant thinks I should try meth or ______ (insert powerful legal drugs that make being in a body more bearable). I can’t disagree. To be clear, I feel I’ve been training for the next phases of life and will feel pretty ripped off if I don’t get to live them. Watching our kids become who they will be. Traveling with John. Dancing at weddings. Holding grandbabies while cooking for their new parents…
If you interact with my kids and their friends, you can help us by reinforcing these messages. They are loved. They should live in full color, now and always. John too. Let’s not forget him. If we’ve learned anything in all of this, it’s that life is precious and short (hopefully not too short). Living in full color is the only reasonable choice.
I shouldn’t have to choose between life and living, don’t you think? Thank goodness we went to Turkey in the first place where I was put on a protocol that worked and probably would not have been considered in the US. Why not? Well, I’ve written plenty about this…which comes down, time and again, to a failure of courage, imagination, and empathy for patients. For this reason, I write. For this reason, I’m pulling it all into a new book. That story must be told and told again so that it is heard and might make a difference someday for someone else.
As for my health, let’s just hope we can get back on track.
And resume life with the promise of living, as abnormal and imperfect as it is these days.