We Only Have Today

It has been a long time since I have told my story. Life has a way of being full and making extras like writing feel hard to find time for. I also feel less profound and more mundane as my cancer progresses. That is paradoxically, also not true. I have a profound life despite so many near brushes with death. Humbly, I also suspect that my skill for writing is gone due to brain radiation, but I know that is a silly reason not to try.

I am now more engaged with death than I have ever been. In fact the last weekend in April, I spend with 13 other close friends and family planning my memorial service. It was a profound and life changing weekend for everyone involved. We all celebrated ourselves and each other as living, dying beings. We were able to really see and appreciate how we had mutually imprinted on each other and the legacies that we will forever carry from each other. Wow. Everyone deserves that gift. To know their imprint and legacy. And to tell others how they have impacted us.

I noticed that each person gave me a unique gift and reflected back to me a similar if not the same mutual gift. Our individual unique friendships had unique gifts- from wild adventures, to being our greatest teachers, to having the best sense of humor, to being a great listener, to helping each other survive hardship. My friends and family give and receive similar gifts. I am not sure if this is true for others, but it felt like a profound insight. The weekend really bonded these beloveds and everyone took on various leadership roles for my memorial so that no one gets too over burdened with work. We have a flexible plan. It is beautiful. I feel honored to get to be part of what is going into it.

I have also entered in to more formalized relationships with beloveds--I have a death doula, Willow and she has been an immense support. I have a core team of supporters who meet weekly via phone. We are both giving and receiving support and forging deep bonds with people who have not all known each other. I trust that this weekly time together will make my afterlife celebration a very connected experience with much deeper relationships between people and much of the grief work already actively happening.

I have had a couple tough years. Still, I have exceeded my prognosis by leaps and bounds. Honestly, it is a miracle I don't understand. I have seen most of my close (online) cancer friends die. I currently am living with three terminal diagnoses (stage iv lung cancer, LMD (cancer in spinal fluid), and cancer in the sac surrounding my heart--each notorious for recurrence.) I have another life threatening diagnosis (recurring blood clots in legs and lungs). I have had four brain surgeries including whole brain radiation which many people choose not to do because side effects are pretty intense. I was given a 20% chance to live a year when I did whole brain radiation in spring 2018, I was given a six month (at most) prognosis when I had cancer around my heart in December 2018. I was given a 1-4% chance to live to this age with stage iv lung cancer. Trust me, I do not know how or why I have pulled through so many near death experiences. But I will keep rolling with the miracles as long as they keep coming.

It is impossible for me not to both engage with life and death when faced with health and statistics like this. The truth is, it has given me a level of liberation--I really only have today for sure. We all know this is true, but I am deeply and actively living every day with this reality front and center. I rarely make plans past next week. If I plan a trip, I always buy insurance and I have had to cancel several trips.  I enjoy the day to day joys and beauties. I read about death and collect poems, prayers, and photos. I am writing little memory books to my kids. I am letting pictures be taken and posted regardless of how I look. I am finding joy. I am living my best life, and I am dying.

It is not all easy. It has been almost five years of my friends and family on this roller coaster ride that we all know is leading to an early death for me (save a cure in the very near future). I can't begin to imagine how impossible that is for everyone, but my kids especially. We have had social workers tell us that the chances were very slim that I would leave the hospital alive. I am asking so many beloveds to hold so much with me, and this crap is exhausting.

For right now, I am appreciating the trees outside my house. They are beautiful. I can smell lilacs from next door. The weather is perfect. A good day to be alive. I am so glad to be sharing this life with each of you. xo