Tuesday, May 30, 2017
Tonga was a dream vacation. I am still in disbelief over its beauty, its people, and its culture. What an enormous adventure to witness one of the most beautiful places on the planet free of overcommercialization, anti-tourist attitudes ( due to irresponsible tourists), and environmental degradation. Tonga is perfect. I will always remember it as remote, magical, beautiful and friendly.
We returned home rested, fulfilled and happy. Our tanks were filled and our sense of humanity restored. I had been struggling with the current global political landscape. After two weeks with Aussies, Kiwis, and Tongans, I was reminded that good people live in this world and they are just as irritated with governments as I am.
We also returned to Cancer surveillance appointments. This is where this post gets a little depressing. Upon returning from Tonga, I had a brain MRI as part of surveillance to monitor any cancer growth. It revealed that my cancer had returned significantly in the form of brain metastasis with the added bonus of leptomeningeal involvement. In other words, there are lesions throughout my spine and cerebral spinal fluid. The follow-up scans were a PET CT which showed stable disease throughout my body with no new growth and old growth diminishing, and a Total Spine MRI which confirmed the lesions spreading throughout my lumbar and cervical spine areas.
There’s no sugar-coating this. The median survival rate for brain metastasis with leptomeningeal involvement is 2 years. That clock started ticking last August. My doctor has given me a year to live. It's possible this number could go up, but only by months.
It’s surreal. I have minimal symptoms so far. No pain, no dysfunction (other than the usual), minimal impaired memory related to the first brain radiation therapy and the usual fatigue. So far I’m looking a lot worse on paper than I am in person. My options are ever-changing. The second week of May, I was treated with radiation to my spine. I have qualified for a study for liposomal irinotecan, an FDA-approved drug traditionally used for pancreatic cancer, now being researched for breast cancer metastasis to the brain. It involves 12 weeks of treatment every other week and multiple follow up MRI scans. It’s going to be a busy summer between soccer tournaments, MRI’s, and chemotherapy.
I’m scared. I’m angry. I’m sad. I’m mostly sad that I don’t get to see my girls graduate High School or Marry. Marek and I won’t have a retirement together, and I will slowly lose my capacity to perform normal daily functions.
But equally, I lament having to say goodbye to a community of friends that have adopted me as family. In the last couple of years, I made good use of my time. I have made my amends to those I may have wronged, reached out to those I love and let them know how much they mean to me or how they’ve enhanced the extraordinary life I’ve had the privilege of living. The kindness shown to my family and myself has been a true gift. In the last five years, I have been able to reach out to a number of people who have always meant the world to me and only once, did I have a negative experience. I am so fortunate to have friends far and wide that show up in my darkest moments and surround my family with love and kindness. I regret not seeing their children marry, their grandchildren born, or witnessing their dreams coming true. I am confident that the world will continue to spin on its axis as it always has and after a short time, life will go on as usual, but I will be missing it.
My husband and kids are phenomenal people. I am confident that while there may be a short period of sadness, there will be incredible resilience and growth. Essentially, my job here is done. I find it slightly ironic that I had no intention of being a wife or mother, but at the end of my life, it is the only thing that brings me comfort. I cannot begin to explain the love affair that Marek and I have forged over the last two and a half decades, and after finally believing that he was really here to stay, we brought two gorgeous, capable girls into this world. I am so proud of Marek and I, two only-children, broke, young and clueless, taking on things like having children, home ownership, careers, life insurance, world travel, and participating in our communities. We were just a couple of broke river guides when we started. In 24 years, we built our own personal Utopia. I feel dying is a betrayal of my commitment to him. I know that he will benefit from a tribe of friends (and exceptional people) who have assured me they will hold him close. And my girls will rise, both on their own and with a father who is more than capable, plus the wisdom of my sisters. I am grappling with a deep sadness of facing the end of my life. Mostly, I am sad to miss out on my extraordinary family.
Posted by Mrs. Robinson at 8:06 PM