SHOWING UP FOR LIFE: A legacy

[read this post to see what the memory sharing is all about]

I remember when Leah was first diagnosed. It was pretty surreal for us all within and of itself, but then added was the backdrop that we already had a family member with cancer. This surely could not be happening. Because of the initial surgery and outcome I remember saying to Leah that it seemed like she had cancer with the “small C.” (I will never use that term again) This was a result of my own denial and chastisement, in part, but also the beginning of how this disease and its course invaded Leah’s body and the lives of those who loved her. No small part of this initial assessment of mine was the additional optimism one needs to feel when given a cancer diagnosis, test, and surgery results.

Blog September 28, 2012:

Surgery was completed at 5:15pm. Surgeon says it all went as planned, there was just the 1 tumor and he got it all. 18 inches of colon removed and many nodes for testing. Determined that no bag would be needed! All in all it's the best news we could expect at this point. She's waking up soon.

We thought we were on our way to chemo and wellness.

October 26, 2012, blog post:

 PET scan results

Well thank God for the yay list because we have bad news. I just got off the phone with the oncologist and the scan results are in. The PET is 99% accurate and it showed that the nodule is cancer and that there are also other several other tiny spots around it that are cancerous as well. The staging is now changed to stage 4 cancer. The plan is still to use chemo to treat the cancer in the lungs, so thank God for Chemo!

This news hit us all like a ton of bricks to the head. I remember taking a call from my sister,
Cathy, while I was at a training in Maine. I went outside and sat on the sidewalk and just cried with her from the other end of the phone. Before I could turn it back into hope and the willingness to believe good could still come from this I left the training for the day.

So began the voyage we all feared in terms of final destination, yet hoped, for the yet unmarked, detour. I believe it was Leah’s ability, initially; to have absolute faith that she would be okay that enabled her to take it on and be positive. Ultimately, though, it was her capacity to keep a foot in both camps that made it possible to navigate the tumultuous journey. We know, don’t we, that there are stages to this? Kubler-Ross outlined them for us: Denial, Anger, Bargaining, Depression, and Acceptance. Concentric loops that widened and compressed over two and a half years.

Leah, Bryan, Elly and Drew came to Maine that Thanksgiving. New to cancer, new to her port and new to chemo she ventured out. She was able to navigate with family and people she had not met from our extended family in spite of her new status and identity: Cancer Patient. The day after Thanksgiving her port became infected and she spent the day at Maine Medical Center. One of many rough and scary side roads, not the detour we were looking for.

The following day was a baby shower for my daughter, Lindsey. Leah not only came but she had prepared the most awesome game to entertain us during the present opening. She filled a baggie with items or partial pieces that had to do with baby stuff. Things like seals of sippie cups or parts of breast pumps. Each item was alien to most observers without the other pieces which made it recognizable. The bag got passed around and everyone made a list of what they thought things were. When the presents were all opened we turned back to Leah as she held up the objects and people began reading from their lists of what they had identified. It became quite entertaining and frequently quite hilarious to see the imaginations of folks, often times labeling things as having nothing to do with babies. And the person who had gotten the most correct received…drum roll…CHOCOLATE! The best baby shower game ever, all because of Leah.

I remember thinking, “I don’t know what is going on inside her but can only imagine how difficult it is to be away from home, concern with her port and how she is feeling, thinking of new life inside my daughter and the precious children she had brought into the world and now this darkness hanging over her head. Yet, there she is, offering instructions, entertainment and decoding random and obscure baby objects.” 

This was my experience of Leah over the next two and a half years. She lived her life both because and in spite of the cancer.

Blog January 1, 2013:

Happy New Year

…It is so much easier to just accept what has been handed to me and know that everything is out of my control.  It sounds hard to do but once you do it, you feel a sense of relief and a weight lifted.  I am not responsible or in control of my cancer.  It didn't do anything to deserve this path I am on, it just is what it is.  God is in control.  It's kind of like when you're too tired to drive on a long road trip and you are so grateful that you have someone else entrusted with the job.  I mean who can you trust more than God.  You can just sit back, relax, dose off if you need to (I do a lot of dosing off) and just know that you have put your life in God's hands and it couldn't be more right.  God will take me down the journey and I will get there how I get there and I will challenge Drs along the way and I will take responsibility for my path where I can but for the most part this is between cancer and God and I am ok with that.  A higher power might as well be in control because this is too much for me to take on by myself even with my friends and family being behind me 110%!

She came to the Cape for a night in August of 2013 to a house I had rented even though she was having high anxiety about scans, scars hurting and an upcoming colonoscopy. At that time she also gave me a birthday present. My first (and only) Alex and Anni bracelet was given to me by Leah and Cathy that birthday. It is an OM symbol: for creation, oneness, sacredness and silence for all that is; without beginning or end, divine energy and peace; the name of God. And the next summer I also received one of the Hope and Strength necklaces for a birthday present. We all know its meaning.

If I texted inquiring how she was doing she would text back and inquire the same. She would text happy birthdays, baby birth best wishes and always sought to have people around and have play time with friends, cousins and aunts. She became conscious of her bucket list.

Leah went on family vacations to the Adirondacks, a cruise with Bryan, trips out to Arizona with her Mom and running when she was strong. A balloon ride was accomplished after a failed previous attempt due to wind. She showed up for her fund raiser, kayak fund raisers for her Center, friend’s weddings, children’s birthday parties or a cousin’s bridal shower. And she was radiant and exuberant at her cousin Sarah’s wedding in November. 

We exchanged some emails over the two and a half years but mostly, especially in the last 7 months, I sent emails of prayers, stories, quotes, silly You Tubes, songs, meditations, and poems. I asked her on a few occasions whether she wanted me to cease and desist.”Just tell me to shut up.” Her response was honest. She sometimes did not read the whole email.  Some of what she read resonated with her and some did not. She liked getting them though, she said,   “I don't always have time to read everything you send.  Some of it really resonates with me others not as much.  I just take what I can from what you write and know how you think of me each day and that brings me comfort.  Your loving compassion is like a continuous fountain and I think of its flow often and let it fill me up.” I kept writing. We all did.

Leah blogged heartfelt thoughts and many words of wisdom. During part of this journey she connected with words from the bible, Pink Tips , what others wrote in cards and Victor Frankl; one of my favorite existentialists to reread, quote and try to emulate. His message, having survived Auschwitz and lost his family, is one of finding meaning in suffering. Ironically, or not, it is also the core of the treatment developed by William Breitbart, a New York psychiatrist, in his work with terminal cancer patients.

October 7, 2014

Something to ponder

A friend of mine shared this quote last night by a holocaust survivor, Viktor Frankl, "Suffering presents us with a challenge to find goals and purpose in our lives that make even the situation worth living through."

I had to hear this several times in order to comprehend the meaning.  For me, suffering is such a constant state I'm in that I found it hard to comprehend it having a purpose.  Actually the harder part for me to hear is the living through part.  If this means I end up alive in the end then I can tell you that I have certainly gained a deeper purpose in my life and a whole new set of goals.  If the outcome is that I'm a beautiful dragonfly then it might take until that transformation happens for me to find a purpose in all this suffering.  But never the less I am still living through it so it must be worth living through. 

 I believe Leah worked to make meaning out of the hand she was dealt. Meaning in her suffering, her sadness, her short life and the legacy she would leave. She was true to herself and made decisions about her treatment that she could live with. She sought solutions and was frequently crushed by the lack of hopefulness she encountered in the medical world. She always seemed to rise up from these disappointments and firmly place her feet on the ground and move forward. She was buoyed by the support she received from everyone and no one was less important in the equation than anyone else. People, their presence, their sharing of stories and their lives sustained her. There were frequent entries on gratitude.

October 2013 blog:

terminally ill

What is it like to live every day knowing that you have a disease that at this point in time, is likely going to take over your body and take your life?  I am not sure yet.  Last year when I was diagnosed I was sure that I could beat this and that by now I would have had my life back, but such is not the case.  I always go through the what ifs but I don't know that I'd be in any different place than I am now, and so therefore it is a moot point and shouldn't have my time and energy wasted on it. 

I do believe in miracles, I see them every day.  I get letters in the mail with people whose lives I have effected in the hugest way because of what I'm going through and how I'm handling it, those are all little miracles.  I believe in acceptance and hope and those are a tough balance.

I have two little miracles say "good morning mommy" every day and if those amongst the others are the only miracles I'm meant to have in this life then so be it.  I  said to my pastor the other day that perhaps God created cancer as a way to bring us all home.  When you are suffering like I am, you can't help but imagine that there has to be more to our lives than just our time here on Earth.  I am not saying I'm giving up, like I said I have hope but I also have acceptance... 

Leah was a miracle, a blessing, a force, a teacher, a Bodhisattva. She wasn’t perfect, none of us are. But she didn’t let cancer define her. She showed us how to be braver, more grace filled, accepting, patient and humble. I believe that her influence as mentor was to teach us we all are capable of being more than we think and we can rise higher than we may have ever believed possible. Over and over again she told her blog supporters that it was the power of their prayers, their love, and their support that sustained her and gave her lift. We were the wind beneath her wings.  By her example and facility in managing this suffering she navigated our collective worst nightmare. She defined the essence of our humanity and the power and necessity of our interconnectedness. We are one and we need each other. Like an exquisite tapestry, we are woven over and under the warp and tightly held together. Our strength, our community, comes from the tension of the warp and texture of the fiber. Or perhaps like Russian nesting dolls, there is more inside and more again. Leah showed us the richness and the path to unearth, untie, unwrap, and unveil, something more than even she thought was there, the gift inside waiting to be discovered. She wove us into her life and we became bound to one another in the experience of her cancer. A blessing we are now obliged and honored to continue to unpack and discover anew.

-Carolee Lindsey