31 Years Ago

Thirty One Years Ago

I can still remember the raw pain of losing my sister. The pain lives in memory and is no longer an active throbbing, aching, literal pain. I promised my sister when she died that I would never stop carrying the pain of her loss with me. I haven't. But the pain has changed. There has been new growth where there once was only raw guts. I have had a meaningful life seeded on a very low threshold of hope.

I have had some embarrassment and shame the past several weeks for being so exhausted. I barely admitted it to myself, but I second guessed all my desire for couch or bed time. I have had consistent chest pain for months now. I have been in to the doctor three separate times--they always come up with pericarditis. My oncologists always says, " I am not convinced its pericarditis." I never was either. Turns out, it is not pericarditis.

It feels wrong to tell you that my chemo is no longer working on the anniversary of my sister's death. It also feels so right. Since my sister died, life has been filled with not only hardship--but real miracles. Yesterday was no different. They told me that after I chemo stopped working, there were no more treatments. Next is hospice. By some miracle beyond myself,  I happened to be in the right place at the right time--they are starting a brand new trial with six people in it (I am the 4th!) I am entering a phase 1 study where I will get a bio engineered virus, that is also engineered to attack cancer cells. The hope is it will attack the tumor cells in my body! Since I will be one of the first human test subjects, they literally have no idea if it will work.

 I have a memory of a documentary (20/20?) about a young person--maybe 18 months old--who received a bio-engineered virus strain--and it too was made to attack cancer. The little person went from being on their death bed to being fully cured. I remember it almost like a dream. Perhaps, this is my next dream or miracle. You all know me well enough to expect that I will not attach to the miracle, I am also facing, right in the frickin face, the very real possibility that this is the end of the road for me. That it is nearing my time to die. But I've never been one to turn down a miracle. Or a roller coaster ride.

My emotions are raw. It is as if I just ran an emotional marathon and I want ice and heat on everything. I want to be tender with myself and alone under the covers in my bed. I feel so much that I can not name the feelings. They currently live in a lump in my chest. I want to make space where I am not thinking, hosting, or worrying. I just want to be. In just being , I am trying not to go into the urgency of getting things done. It hurts me to say that out loud. I finally, after almost five years want to cry. A day long cry.

 The truth is, I have not been myself. I have been low energy, no appetite, lots of chest pain that never quite made sense. (lol and brain damaged enough to repeat myself in the short space of four paragraphs).

When my sister died, she was there one day and gone the next with no warning. Here I am 31 June 19th's later, dragging my death out. I always talk about how Megan rarely made spiritual visits to me after about the first year. These past months, her presence has been strong, loving, and powerful. I do not like that this is happening, yet I accept it. Finding out that my cancer was growing significantly on June 19 told me that the Universe has my back no matter what happens. too magical to not be magical. Thank you Megan for making it possible for me to live (almost comfortably) with all this scary unknown.

The emotional floodgates of what this could all mean for my beloved children, I can not touch today. I am holding that massive pain close to my heart and sacred as can be. It is like a volcano and just letting myself think about it brings on tears. I expect making room (and figuring out boundaries when needed) for this volcano of impossible difficulty will be the main work for me and my kids should things not go well. Or maybe not. Today I am choosing to let that pain live in me, without engaging it. Just honoring it like a monster that lives in the basement, but leaves me alone as long as I acknowledge their presence.

Once again, I could not survive this roller coaster ride if you were not here with me. Thank you. I will be in the hospital/seeing the doctor daily l in Rochester for 8 days after July 4th. We will not know how things are working or not for a few weeks to months. Please send me love and prayers.  Much of the same back to each of you.

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