Thursday, June 20, 2019

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.

44 comments:

  1. I love you. I am holding you in my heart. -Eli

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  2. sending you love and affection.

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  3. Sending you support, strength, comfort, and love. Holding space for the work you are doing.

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  4. Thinking of you on this roller coaster ride. I imagine this bio virus pac-man, hoping that is the case. Kjessia ❤️

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  5. We are all here, everyone you know--continuing to celebrate our relationships with you. Internally battling to honor the space and time you need to manage your life on whatever daily terms you need. Because we all want to be with you: loving, supporting, doing... Do not apologize for a single thing. You are loved and appreciated for all you have been and continue to be. Sharing your journey of pain and fear is so courageous! And its okay to be anything and everything--without apology. The only expectation is that you do the best you can--each moment, each breath--for you and your children--even if breathing is the best you can do. That's it. That's all. There is nothing else you need to do except breathe in whatever exquisite joy and beauty you can in any moment possible. And if the best you can do is hide under the covers and cry, then so be it. You make it sound so incomprehensible or shameful... yet most of us do the same--for no better reason than waking up irritable. Its called vulnerable. Its human. And you get to meet each moment any way you can. Never fear you aren't meeting an expectation. You have far surpassed any and all--except your own. Be gentle with and for yourself. Call when you want or need anything--even if its just a presence nearby. Frankly, I don't know where you find the strength and energy to share your journey through writing. A truly amazing endeavor in itself! Our culture advocates breathing and doing for the spectacular moments--I believe life is so precious and fluid, we breathe to experience all the little, seemingly inconsequential moments as well. Colleen, you don't have to do the spectacular because you already are spectacular.

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    1. Cat you are my family. We will never spend adequate time together in this lifetime, but I believe we have a real and meaningful connection that will live on forever. Thank you. Big love. forever. xoxox

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  6. Thank you so much for sharing you with the world and letting me witness. I am sending you all the love.

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    1. You inspire me in the ways that you share your life online. Grateful that our paths have crossed paths. I would like to give you (and Thorn) a piece of my art and/or a book that is special to me. Would like to get your shipping address (and I will ask Thorn as well)--prob easiest on facebook. I have always felt witnessed by you in a profound way that means so much to me. Thank you for that. It did not go unnoticed. Big love now and always. xoxo

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  7. You are so incredible expressing yourself. I respect your willingness to share such powerful feelings with everyone around you. It's never easy to find the words to describe such intensity, but you do it beautifully. I am here for you and pulling for the best outcome... Thank you for sharing!
    P.s. I hit a couple side affect bumps and am still very much wanting to see you, especially before you set out on your journey!❤

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    1. I am confident we will connect in these bodies before either of us part ways with life as we know it!

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  8. I took a quiet moment to connect to a high sense of love that I may send it. When I connected to it I got back that this "high love" knows you and is already great friends with you. I send you love anyways.

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  9. Your strength, wisdom, and beauty never cease to amaze and empower me and so many others. Love and prayers. Xoxok

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  10. So much love coming your way. Your strength and clarity through this difficult, unknown time is an inspiration to me!

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  11. Sending you love and feeling deeply sad reading this. I’m hoping for the miracle Colleen

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  12. You are a miracle, I love and miss you.

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  13. To all you’ve said........ I love you and love your words. There is so much life in your words.

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  14. Wow, beloved. This is so powerful, poetic, painful and potent. I am so honored to witness you in the messiness of living. I love you so much!

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  15. Thank you. I could almost see your sister in your chest.

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  16. Colleen, I love you so much. Scott and I both do. You are in our hearts and on our minds daily. You are simultaneously one of the most gracious and badass women I know, and I hope and pray you are as gracious with yourself, as you are with others! As you journey through this crappy cancer, we hope that you and your loved ones know the kind of love and care that you so abundantly give to others. Love you, dear one. Love. You. ~Karen

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    1. I love you so much! xoxoxoxo same goes for Scott, xoxoxo Hope for connection. love you forever!

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  17. You are a beautiful person who I feel blessed to know. I hope the journey ahead is full of love and you feel us all with you.

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  18. Sending you neverending love and prayers ��

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  19. Reading this causes a rush of so many feelings at once. Sad that you are embarrassed and shameful about being exhausted when you fight the good fight every damn day, sad that chemo is no longer working, amazed and thrilled that you were one of 6, truly sad and horrified that you have to acknowledge the monster in the basement and that it sits around your heart in the hopes you will not have to share it with your kids. Much love is being sent to the woman I have not seen in literally ages, but am so proud to have known!!

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    1. Amy! My friendship with you and my connection with your family, have huge impact in defining who I am, and what matters to me in this world. I am deeply grateful for you, your mom, you dad and brothers. I have so many important memories--like playing house boat on basement furniture Our "boyfriends" were darn....who were they?!? Some male rock stars. my brain is working against me... Thank you for reaching out--this feels important. Big love to you now and always. xoxo

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  20. That was beautifully written. As always thank you for sharing your whole raw self with us. You are loved beyond measure. May knowledge of the great love for you hold you and allow you to just be and rest breathing in and out as each moment comes. Tanya Mudrick

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  21. I remember almost five years ago sitting at the Turtle when Teri S came up to me and told me of your diagnosis. I cried, whether for you or myself as I was on a similar journey. Probably for both of us.
    I am sorry for your pain and this wretched news and am praying every day for your miracle, for an optimal outcome. Love surrounds you, mine included.
    Am sending a Messenger message for your house address as I have something for you. ❤️❣️��

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  22. So much love to you, Colleen. <3

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  23. Whenever I think of you and reach out to send energy and love, I feel such a surge of strength, love, and hope in return. Love love love love love to you. ~Liam

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