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

What Nick Taught Me

When I think of Nick’s death, I think of his wife who was driving the boat. The way she dove into the water. Over. And over. The panic she must have felt when she could not find his drowning body. I don’t think about what it might be like to have only water in your throat. I think about what it would be like to have only water in your hands.

I have been in a lifelong relationship with tragic death. I have 100 Nicks. Each with their own set of images burned in my mind. Hundreds of images visit me when I’m driving, grocery shopping, or standing on the edge of a cliff. Tragic death is the fiber of my daily life as sure as it has ripped me open more times than I even know how to count. It no longer matters if I know today’s Nick. Every new death, a new Nick who may as well be my sister hanging behind the house that I grew up in. I am in the club of knowing raw grief from tragic death.

When I think about my sister’s death, I don’t think about the tension in the sheet that broke her neck, I think about the release of tension when my father cut her down.  I think about how it felt to live in my body while sitting in my parent’s kitchen separated from her by nothing but a glass door for the last time. Watching the body bag zipped—what has come to represent the threshold of the universes that will forever separate me from her. This is the stuff that my bones are made of. When you tell me I am a force, I tell you every molecule of tragedy I have known has made me so.

When my mom drove me home from the doctor visit where I found out I had a diagnosis that carries a higher likelihood of death than any other cancer, I remember looking out the window at the landscape of Lake Street, in a city I have known all of my nearly half decade of days, and thinking, “How fascinating…I think I just found out how I am going to die.” I wondered if the landscape of McDonald's and the old bar across the street looked different through dying eyes. It was too new, I couldn't know the answer. Getting to ponder all of this is a gift. The gift of possibly not being ripped from this world tragically was not lost on me.

On the corner of my block is a free community art studio run by a survivor of the 35W bridge collapse. I understand that. Called to the edge of life, I find nothing there to protect or keep secret. The only thing that feels important is making my art. The edge is a place where I learn that breathing is making art. Breathing calls me to be me while I am. The edge strips me of my masks and shows me how useless they are here and now. In this lifetime, this is the only me I get to be. Everything I add to this lifetime is art. I understand being called to make my art, whatever that may be and to help facilitate other people living and making their art.  

I know tragic death. Your worth is so immense that it breaks my heart. I am fierce in loving Every. Fucking. Thing. When you are ripped from me, whoever you are, I carry you with me always. If I can love you this fiercely, it makes it impossible for me to not believe my own worth. So push me to the edge of this life and tell me that breathing might not always be my art. I will think not just about death, but about living. Living as me. Quirky, loving, weird, fierce, imperfect, and broken: Me.

When I think about living, it doesn’t have to be more exciting than this right here. My son is whistling in a high pitch and cutting fabric with expensive fabric scissors that are one of the best tools I own. I learned to sew from my father. It warms my heart to be passing on something special to my son. But I could have missed the art because of the goddamn whistling that makes the sweetness almost unbearable. My life sometimes feels like a patchwork of tragedy and high pitched whistling, but the gifts death has brought to my life help me see love and art in everything. 

Sometimes

I am picking her up from work. She gets in the car and closes the door. “Hi, how are you?” I ask. “I had a hard day,” she answers. That’s it.

In our family, a car is like a magic space. Sometimes, we like to take road trips and blast music while we all sing along. While we sing, everything falls away--there is no pain or injustice, even if it's just for a moment. At other times, when anxiety hits and I don’t know how to support her, we get in the car. Driving creates space that we don’t find in the confined boxes of homes or businesses. Driving loosens what is tying nerves into knots. We notice nature. We talk about trees, sky, and water. We talk about the big stuff. Sometimes the car has the magic ability to create the space and comfort that I want to offer her as a parent.

Then, there are times when the car makes me feel the hugeness and pain of the space that separates us.

When she shuts the door, I know that this will be a quiet drive. Still, I take the parkway where I feel the trees and water offer their assistance to me through my memories of their comfort and connection.  I point out how the clouds make the sky look striped. She remains silent. I feel like if I say another word, it will probably trigger frustration-she needs quiet. So, I say nothing.

She comes in the house and goes to her room. Closes the door.  There are so many days lately when she closes the door to her room. I get it, this is the life of a 19-year-old, and still…. I want to put her back in the car and run away forever. Drive to the edge of the most beautiful place on earth. And live, live, live with her! Instead, I am on the other side of her closed door.

I can feel her broken heart from the living room and I can’t save her. My cancer is a huge part of the brokenness of her heart and I don’t know what to do. This experience might be the most painful part of my life right now. I know what I can do about cancer—it is specific and measurable. When my problem is the infinite space that separates me and this precious human--the closest living thing to me--I feel clueless. It feels like everything and nothing is both possible and needed. I haven’t got a clue how to bridge love and separation. Sometimes I feel like my sum total is hurt plus more hurt.

I think about turning on the TV. I wonder, will it help? How long until it will distract me from this reality?

Sometimes, all I want is to connect and watch my daughter enjoy the freedom of following her own passions with or without me. Sometimes all I want is to not feel like I am the only one who washes dishes in this house. Mostly, I want to know what to do with this space between us. How to honor it, challenge it, accept it, and change it. Paradoxically, I can’t change it, and I refuse to accept it.

I decide against the TV. I knock on her door and ask if I can snuggle with her. After a few minutes of silent settling in, I realize that right now, our physical contact is the most beautiful place on earth. This is not a metaphor. Sometimes, it doesn't take our car to make magic. In my family, sometimes this is what living looks like. 




Post Script: Tonight, after reading this, she came out of her room (where the door was closed) and said, "I'm mad about the dishes part." She came to me, fell into my chest, and sobbed. Eventually, through tears she said, "I am so tired of cancer." I told her: I know, me too. "No. I don't think you know how much I hate it." We cried. I love her. She said she loved what I wrote. Sometimes telling stories helps us break through the silence and space between us. <3

Deepening the Learning

I came home from witch camp with some new promises: I promise to write more. I promise to dance more. I promise to take better care of the earth that is my body and the earth that is all around. So I am writing and letting go of attachment to outcome.

The day after coming home, I had scans. Today I got the results.

Here is what the doctor said, "Your scans are…Stablish." My cancer is growing, there has been a little growth in the past six weeks. I knew this day was coming--but it was not possible to predict how living with this information would feel. Feelings are complicated. I feel ready to "deal" with cancer. I feel sad that cancer is progressing. I feel scared about telling people. Especially my daughter. And I feel pissed that I didn't wear the socks that Willow made me. Every other time I have been in this office I have had them on. Every other time, the news has been good.

When this drug that I am on stops working (which I knew from the get go that it would), I have other drugs to try. They are coming out with new drugs for the ALK mutation that I have--this time last year there were only two oral drugs, now there are four. Plus, (lucky me) failure of my drug qualifies me for a trial study of an aggressive chemo drug. 

Last year at witch camp, I learned that I wanted to chose life. I gave myself permission to want the things I wanted and step into the center of the life I am building. And live there. Embodied and unafraid to fully experience life even if it hurts myself and others. This year, I see ways that full living has happened and ways that it has not.

This year, my camp focus was on grief work. I was excited to bring all the fruits of my grief labor over the past year to offer others. (It is humbling to even write this down!) I was excited to connect with others through their grief. It didn't work that way. Instead, I tapped into a grief that was deeper than any I have experienced this past year. Cancer has made me feel like an outsider in many ways with people. I hate the identities of cancer and terminal illness and I can't shake them. It is painful.

I came through the hard grief and left camp knowing that my learning is deepening through my life with cancer. I still want to have that embodied living. I still want to build a life and live it. And, I am called to the difficult work of accepting cancer as it is right now. Right now, it is growing. (Fuck, that is hard work.) Don't get me wrong--I am not throwing in the towel. I am still ready to stick around a long, long time.

I don't want to say I choose cancer, because I don't. I want to say, "I choose life and accept the grief that comes with it." For me, today, cancer is my grief. But it won't stop me from making plans to go dancing this weekend. <3

Just Like You

So, about living.  Turns out, it feels more complicated to me than dying does.  Turns out, I have endless possibility in front of me that I get to manifest.  I get to live, just like you.  I buckled up for the worst and over and over the universe answered, “You are going to get a miracle instead.” 

I didn’t ask for miracles.  I did not want to believe or invest in miracles.  In fact, the warrior in me knew that I, of all people, could make it through an ugly deal.  I could put on my armor, and show up to big bad monsters.  I like to think I am not afraid of monsters.  (As I write this, I know I am just as afraid as anyone, but I like to think...)  Maybe it is the adrenaline that the fear brings that feeds a certain thrill in me, but something in me gets bold and says, “Bring it on.”  I know how to fight monsters.  

When I was pregnant, I remember offering to the universe—I can handle the hardest of the hard when it comes to kids—Give it to me.  I had been a preschool teacher for almost a decade and I had learned to love working with kids with challenging behavior.  I also learned that I had a gift with hard situations.  I believed I would not be abusive to a child no matter what.  I felt a call to take on the challenging so that someone else who might not have the capacity would not end up breaking a soul.  

Then I got this precious baby.  Most of my memories of her first seven years are of watching with amazement, wonder, awe, and love every single thing she did.  It was not hard at all.  The challenges of parenting her, turned out to be about me, not about her.  Learning how to be in love with someone new.  Never adequately learning how to give her the support she needed related to her medical diagnoses.  The hardest of the hard came from inside of me.  In intimate relationships, we all break each other in little (and sometimes big) ways.  The way I broke my baby was in the places I did not (at the time) have the capacity to feed her needs—despite wanting so much for that to not be true.

Getting a baby and getting cancer may seem like very opposite gifts, but cancer is teaching me similar lessons.  Instead of a big bad monster, cancer has mostly meant living with amazement, wonder, and awe.  The challenges in living my life mostly come from me.  I have not felt pushed to the brink of my capacity—but I suspect that I will learn that my brink comes from inside myself.  When I was pregnant, I often thought that part of my role as a parent would surely be to screw up—how will I hurt this precious soul that I never want to hurt?!  And now, in my own living-with-cancer life, I wonder the same thing, how might I get in my own way and be the cause of my own brokenness?    

As much and as often as I have been saying that I am embracing life, as I write this, I realize I am still buckled in.  I am still wearing my armor.  When I wrote that I get to live life 'just like you,' it was the first time since cancer that I felt the expansiveness and freedom of that truth.  (I know, you have all been saying it since day one, but I had to learn it myself.)  Maybe my life will be just like yours.  Maybe I will live longer than you.  Only time will tell.  But I get to live life just like you and that gives me the courage to take off my armor.  Still, I feel less sure about how to step fully into living.  Can I really take this risk?  I want to let go and feel life without the tension of death.  Let’s forget that I might be dying. 

I am listening to birds chirp and feeling the wind on my arm.  I feel called by nature to get out of this self centered brain thought and go out there and live.  Just like you. 

Hell Together

He held my face in his palms.  He does that when having my attention is of utmost importance.  He learned about eye contact in school.  Most of us just get it--when you want to show someone that you are paying attention, you make eye contact. But my son was not prewired like that, Finn had a specialist who taught us all to say, “find my eyes.”  He practiced so often, that he learned—finding eyes is what you do when something is important. 

He held my face. He found my eyes. He asked me, “Your cancer is not going to make you die, right?”

The gap between hearing his question and knowing how to respond was as deep and wide as the Grand Canyon.   In a mere second, a rush of thoughts flooded me.  I have stage IV lung cancer—the number one killer of all cancers.  I know anything is possible.  I also know this is a crappy diagnosis.  This is an important moment.  I know what I say next matters.  This feels like hell. 

I thought I was sick all day today.  To be honest, I’ve been sick a lot lately.

I started coughing last week.  Not very much, but when I do, it is a cough like I am a smoker.

My hip hurts again.  I get out of breath easily. 

I tell myself that this could all be because I am more active.  I tell myself that this could be an emotional manifestation of fear because it is the week of my bi-annual brain scan and quarterly chest scan.  No matter what I tell myself, I also know, I might be dying of cancer. 

At the same time, something profound is happening to me.  I am living.  Feeling love.  Saying yes.  Showing up.  Making art.  The joy of repeatedly having the freedom to say “fuck it,” and, “Yes!” I am blessed with living so actively present in the moment that I spend very little time pondering the future. 

I want to believe beating cancer and miracles are possible.  I just don’t want to be a fool full of false hope.   I want to answer honestly, but this is so complicated. 

There are many paths out of hell.  If you aren’t careful, most of the lead you right back.  The problem is, there is no way to know what is the best way to go when hurt, deception, and false hope, are the only choices you can think of.  I’m not sure if this is right, but I choose hurt.

“Some day I will probably die from cancer.” 

When Finn gets sad, his eyes fill with tears before finally falling.  After they came, he sobbed and sobbed.  I held him and gave this shitty information time to be felt.  I tried to comfort him.  I told him that I might live until he is a grown up.  I told him that some people believe in miracles.  I was back peddling. He was so solid and so broken at the same time.  He said, “Have you been keeping this secret from me all this time?” That hit me.

Maybe playing everyday and having fun and only sometimes stopping for homework—is just what you say it is—secret keeping.  Finn, you deserve as much or more than anyone to be going through this with me.  Instead, I tell you a little and let you watch Tom and Jerry (far more often than you should).

Honestly, I can’t remember what he has been told exactly.  I know that we have been committed to telling him the “truth”—but the only thing I know about the truth is that it doesn’t really exist in our human construct.  We are all telling stories that hold nuggets of truth to map together our mythology. 

What I have learned about cancer (much like life) is that we all have to build a story—a mythology for survival.  Cancer has shown me that my mythology is different and does not work for many others on this same path.  I am engaged with the prospect of death.  I am here with my beloveds as they sob over the possibility even though it might not be true.  This might not be the easiest path out of hell. 

The next morning, Finn sat as close to me as his body could allow and said, “I want to sit close, because some day you might die.” In this solid, broken moment I feel grateful to put my arms around this precious soul.  I am sorry to cause this hurt, but I am glad to be here in hell with him.