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.