an open letter to my community

An open letter to my community near and far,

As the dawn of my last of twelve chemotherapy treatments approaches, I look out over a sun bathed, snowy landscape that is alive with abundance, glistening with hope, calm with delicacy and protruding with possibility. If I’ve learned anything since I was diagnosed with cancer on July 16th, it’s a snippet into what gratitude feels like.

And this is it.

I am overcome by the emotion that my body, mind and soul are experiencing as the last treatment approaches. I still have an impending February surgery, yet even knowing there is this big triumph still to come, my gratitude for you and eagerness to get to the other side of this ride cannot be subdued.

During the last few days, I have found myself almost constantly reflecting on these 6-months. I recall the months of stomachaches that doctors and I wrote off to diet related bloating. I distinctly remember the night my ache turned into pain; July 4th – we had just eaten wood fired pizza in San Francisco and were about to board a boat to watch the fireworks with our newly married friends. And I cringe at the memory, 4 days before I went into the hospital, while trimming sheep hooves, when the pain in my stomach got so unbearable that I screamed and yelled at our sheep and our farm helpers. (Needless to say, there was relief to know it wasn’t the sheep trimming or the helpers that made me so angry!) And of course, there’s the moment when the world stopped for a few moments, when numbness and fear overtook my entire being…When, in the hospital, post surgery, the surgeon came into my tiny room filled with 8 hopeful faces of my nearest and dearest and he told us my cancer was Stage 3 and I would be needed 12 sessions of chemotherapy.

These memories are real and feel important to hold onto a while longer. But no longer are these the memories the ones I play over and over in my mind. Perhaps these ones will never go away, but they are certainly fading. These memories have been overtaken by beautiful images of what it means to be part of a community. They have been overtaken by expressions of love, care and selflessness. It’s these warm memories that I hold so dearly in my heart, that kindle the fire in my soul and melt the darkness out of it – just as the sun melts the ice off the pond’s edge.

How do I thank you for all you have given me? You have cared for me in so many ways during this time when Steve and I needed it more than we knew. These are some of the gifts you have so generously given us. These are just some of things we thank you out loud for:

Thank you for the 100’s of sticky notes and letters that plastered my hospital walls with radiant color of love and humor. For the railing you built before I got home from the hospital so I could safely walk up and down our deck stairs to get inside our home. For organizing and rearranging our yurt so the hospital bed would fit and we would still feel comfortable in our home. For cleaning the mouse poop out of the corners of the back room. For endless deliveries of local food, grown with love by people in our community; and for meals and groceries that continue to nourish our bodies. So much gratitude to our farm staff, for ensuring that our mushroom CSA, our sheep, our dogs and our ducks were all taken care of while we completely checked out to focus on care for me. Thank you for the incredible fire you ceremoniously lit to bring healing light to my family, my caregivers and myself. And thank you to those of you who attended the fire and brought your healing energies to share with our land and me. We are thankful for our CSA members, whose emails, stories of personal cancer journey’s and gratitude for our honesty helped us at a time when we knew we couldn’t do anymore. To the Piggery, for the fresh meat bones you gave us so our friends could make bone broth for me – a specific order from the nutritionist. Thank you for the numerous rides to and from doctor’s appointments near and far, for the notes you took at those appointments, and the help deciphering what the hell we were hearing at each of those appointments. Such tremendous thanks for the endless stream of cards, emails, notes, gifts, texts and pings of love from those I know well and those I haven’t spoken to in decades. These notes have not stopped for even one single day since July 16th and each one holds so much meaning to me. For the cards and gifts from unknown people, including a recent delivery of coffee and chocolate from a “Hector” in Costa Rica (who is this Hector person anyway..?) I am still humbled by the time and energy you put into creating an incredible fundraiser to help us get through this journey with less financial stress. I’m thankful for each individual and business who donated, attended, sent warm words, played music and provided strength to us in the perfect way you knew how. For the dozens of intricate coloring book gifts and movies that have kept my chemo brain from truly freezing up on itself. We are deeply humbled by the two families’ – one whom we have never met – who graciously gave us their houses to live in during this winter so our life would be a little simpler and warmer. And we are thankful for you, who helped us move out of the yurt into the first house and from the first house into the home we are in now until April. For the deck chair you gave me so I could sit comfortably while healing for surgery. Thank you for the times you offered to walk our dogs because you knew we were too tired or unable to give them the exercise they need to be happy. To my dog Vida, who never leaves my side whether I’m sleeping, hiking, walking, cooking or lounging on the couch. To the students and teachers at Mighty Yoga, who have knowingly and unknowingly supported me as a teacher to offer you my authentic self during these 6 months, for the meditations and intentions you have offered me and for showing me what strength and commitment truly looks like. Thank you to my family and to the farmers who have brought us or mailed us medicine in forms of tea, elixirs, juices, ginger and turmeric roots, tinctures, mushrooms and wholesome meals. I continue to be deeply touched by the willingness of many of you who share your knowledge, your stories of cancer triumph and personally hard experiences you’re going through so I know I’m not alone and I too, will get through this. To the organization who recently offered me a job as Director, entrusting I will be strong and healthy to take on the charge. And thank you to the endless amount of healers who have kept me strong during these 6-months through massage, acupuncture, physical therapy, yoga and energy work.

I have learned many things on this journey. Too many to list today. But one thing that will stick me forever is that it is in our nature to care. Your nature and mine. It is in our soul to nourish. It is our blood to connect. It is our heart to heal. While many of the gifts we have received are from people we are close to, many are from people we have never met, from people we have met only once or knew a long time ago. And every single gift has made this journey just a little bit easier. None of us are alone. No matter how much we might want to be at times, we simply are not. I will never forget this gift and I will spend the rest of my life believing in the power of connection and community. And I will remember the lessons of selfless care that you have taught me and only hope I can pay them forward as humbly as you have.

Thank you, from the bottom of my heart to the bottom of yours.

something to celebrate

This is a celebratory week. Sure, it’s the beginning of 2016 but that’s not what I mean.  (I believe that we actually have the capacity to start anew whenever we want if we allow ourselves the time, space and intention to do so. So New Year’s doesn’t resonate with me that much).  This week is more exciting than a new year.  This week is the restart of my life as I knew it pre-cancer.  The restart of my life as woman who, rather than letting toxins have their way with my body and cells every two-weeks, can build immunity and cultivate strength in my body, mind and soul that will grow and last.

This is the week that I have my twelfth and LAST chemo treatment.

I’ll repeat it, a little louder in case you missed it. THIS is the week I have my LAST CHEMO TREATMENT.  I gotta say, I can’t believe I made it. This 24-weeks seems to have taken about 4 years to go by.

Yet, even as we get closer to putting the cancer behind us, the life lessons continue to arrive.

Thursday night I got a nasty head cold. Ironically, other than the couple hospital visits I had early on in the treatments, this is the worst I’ve felt since being diagnosed with cancer. Being sick on top of being sick is a funny lesson on perspective. I’m not a very good patient (Steve can attest at length if you need detail) so being bed ridden doesn’t work for me too well. After spending the last two and a half days in bed or on the couch, I insisted on taking a walk.

Three Eastern Bluebirds hopped along the pond as I walked by. These birds are a vibrant shimmery blue with a bronze chest. Their calm and playful presence despite the freezing temperatures reminds me to laugh and relax.

Vida and Sadie nearly barrel rolled me as they sped after a vole beneath the snow cover. These beings, whether sleeping or walking – are a constant by my side. They teach me what devotion means.

Animal tracks in the snow – a cat, a deer, a vole, a human. Lesson in perseverance.  Giving up is never an option.

The wind blows snow into face, causing my eyes to water. Yet in between the strong gusts, the air is calm – almost perfectly still. I pause as I am reminded once again that the only thing that is ever constant is change.

Before circling back home, I walk up to Steve, who despite the cold weather, is not wearing gloves or a jacket. He is in the middle of an annual pre-winter chore we usually do together; cleaning out a 5 inch thick layer of poop covered straw from the duck house. Once the straw is out, he will add a little extra wind protection to the doors and set-up the house in it’s winter location in the woods. Steve’s body is strong and resilient. His hands are weathered from working outside. The cold fuels him to work efficiently so he stays warm and gets the job done. His stamina and dedication to our animals reminds me of what I will be capable of again.

And I am reminded that my love for this earth, for our land, for our home and all beings that reside here has not subsided.  Cancer has squashed my spirit at times, but I am reminded that the spark is still there.  I have learned to listen in ways my soul never knew before. And I am reminded that after this week, I can begin to build my flame again – for real. For, it won’t be squashed in two-weeks.

feeling alive again

On Tuesday I felt alive again.  And it felt good. Damn good.

The last time I felt so alive was the night I went into the hospital, July 16th.  I was riving in such tremendous pain, only a sentient being can experience this kind of physical suffering. I can’t promise I wanted to be alive in those hours, but it is clear to me that I was.  My shirt soaked with tears.  My throat scratchy from screams. My eyelids sore from being closed so tightly.  My heart aching with sorrow for Steve’s fear. Memories of pain don’t go away. Or at least mine haven’t yet.  Since then, life has a shadow. Even the sunny days have an unknown darkness within them. I have written about this all before. 

Yet the events of this week were kismet. And since Tuesday, I once again feel an overall sense of hope that life will be filled with brightness again one day. We will get through this and hope and laughter will be present.

You might stop reading here. Perhaps that is enough of a blog post – starts rough and ends on a positive note. But if you want the story, here ’tis:

Two weeks ago Steve and I were invited to a Whole-Farm Planning Class. I learned the topic years ago, so wasn’t inclined to go, but the class was being hosted by a farm in Naples, NY. Meanwhile, on Thursday I was invited back for a second interview for a job with a non-profit who trains people to be new farmers.  The interview was Tuesday night.  2 days with farmers and an interview with an organization that trains farmers. Coincidence? Kismet?

The farm class was in Naples, NY. Naples is a small town in a valley next to Canandaigua Lake. It’s just minutes from the cottage where my family spent hundreds of summers’ days together; swimming, laughing, eating, lounging and more. It is here where I first slowed down enough to witness that nature has her own language. It is here where, by swimming across the lake and learning to slalom water ski, that I discovered I had the strength and capacity to do anything I wanted. And it is here where a large piece of my soul still resides – always full of glee and wonder.  The farm course was being organized by a woman who owns a farm in Naples.  She is somebody I have wanted to meet for a few years, mostly because her farm is in Naples but also because the farm’s priority is to cultivate, share and inspire abundance by saving and selling seed.  The owners of this farm are selling the seeds from plants grown in a valley where my soul lives.  How could I not want to know who they are?  I signed up for the course.

Family at lake
Me, Ben, mom, dad, (Vida’s backside), Canandiagua Lake

Though Day 1’s content was repetitive and slow, I had the chance to connect with 12 other beginning (and some experienced) farmer’s about each of our business’s and also the opportunity to ask them how a non-profit that trains farmers could help each of them. This was well worth the trip in itself.

But Day 2 is when I realized I was still alive. I had been preparing for my Tuesday interview for days, not sleeping well at night, going through answers to interview questions in my head and reading about the mission and work of this non-profit. A feeling that I actually might want the job – that I want something – started becoming real.  I haven’t felt this in months. Also on Day 2, our group of farmers spent 90-minutes ‘Whole Farm Assessing’ parts of our Wellspring Forest Farm. It was enlivening, eye-opening, and humbling to have 12 farmers process our farm and our holistic life goals with me.

These few moments were the first time since July 17th I felt like I actually cared about something (other than other humans and animals).  To be more accurate, I realized I actually still care about my future.  To feel this, I realized, I am still truly alive. Yes, I am fighting a disease that shadows my every move, but that shadow is not me. And will no longer be me.

 

hating the sun

I’ve been called a lizard.  Not because my nickname has been Liz for so many years, but because I’m addicted to sunshine. On warm days, I plan my activities so that I maximize my time in the sun. If I need to sit in the house or at work, I slowly follow the sun’s rays throughout the day so it can warm my skin at it shines through the window.  There’s a special spot in the library at Cornell where I work in the winter and through the dome of our yurt the rays beam through as a circle, and Vida and I both arc our way around our circular home. The yoga studio I go to faces East and one bitter cold winter morning, there was a nice sliver of sunshine beaming through the window.  I placed my mat there and I moved it slowly to the left throughout the practice.  My yoga friends laughed with love at my addiction.

But, this morning, I don’t like the sun.  Waking up, I opened my eyes and it looks like a beautiful day. The sky is blue and the sun shimmers on the flowing pond water. But the moment I feel the beauty of this day, it ends abruptly. The feeling is squashed almost before that warm sense of gratitude even arises.

Today is chemo treatment 10. 3 more to go. 3 is a big number. Chemo makes everything dark, everything foggy, everything painful and everything taste bad. It turns the sun into something that teases me; provoking me because I can’t be outside.  Today I can’t warm my skin from the sun’s warming rays and I can’t walk beneath it’s radiance. This type of living needs to wait. Chemo teaches me perspective. Every 14 days, the best case scenario is that 2-3 of my days are a wash –  almost as though they don’t exist. On these days I sleep, I rest, I watch movies, I read if my mind is capable and I drink tea. But worst case scenario is the side effects take hold. I am in pain. I take pills. I sleep. My years of practicing being present in the moment go out the window and I wish more than anything that the time would go by rapidly.

my dharma, my path

my dharma, my path

Cancer gives a person perspective.  I wonder frequently what to do with this perspective because it’s complicated. I’ll tell you why.

I mentioned before I was laid off from my job at Cornell. So normally – wait, what was “normal”, again? I’ve forgotten. Let’s just say, IN THE PAST, if I lost a job I would actively search and seek another one.  This habit is leading me to put out that same effort and energy and I’m look for and apply to jobs in my field. But perspective gives me pause.

On the surface the pause is simple. I’ve been pretty public about having cancer. Who wants to hire somebody with cancer? Cancer is considered, rather is, a disability for many people. And it is for me on many days when the chemo side effects really take hold.  Secondly, what’s the point in getting a job? I could just get cancer again and once again, it will derail my life (and the lives of my husband and family). I would again go on disability, maybe get laid off again, put my life goals on hold, etc. etc.  So I asked, why pursue the habitual paths I have always taken if they led to my current situation?

In my more intelligent moments, I pause to seek perspective on life. I ask myself how I truly want to spend my days and my time. What gives me pleasure? What gives me satisfaction? What gives me happiness? What kind of person do I want to be? What will I “do” that cultivates this person? In yoga teachings, we often call this our Dharma. So I sit, I walk, I stroll, I meditate, and I wonder “what is my Dharma”? Simply speaking – what is my truth and how do I cultivate it?

The life I lived before cancer (and much of my life that still exists when I see and feel clearly and chemo brain hasn’t fogged my mind and vision), this life gives me much joy, tremendous satisfaction and intense moments of happiness.  My favorite moments are spent outside, many of them using my body to work the land in a way that will lead to regeneration and growth.  The times I feel most authentic and thus empowered and truthful to myself and to others are when I teach from the heart. Teaching gives me these gifts – especially teaching yoga.

Again, perspective gives me pause because I desire a home. One with lots of insulation, with plumbing and a bathtub. I want a room to practice yoga in and where Steve can play the drums and an extra room for the child we hope to have one day. And I wonder, would farming and teaching about farming and yoga enable us to have this home? Is it one or the other? Can I have both? Can I have it all?

Where do these answers and reflections lead me?  In my positive moments, I don’t doubt for a second that I can have it all, and that I will. In my less hopeful moments, I assume I will have none of these things because cancer or something else will distract my life forever.

What I see on my path of perspective these days are options…and I’m going to embrace and explore them all. I’m applying for jobs that interest me. I’m writing a business plan to start a yoga shala. Shala means “home” and in my vision this would be a studio for yoga classes and other healing practices, as well as a place for community growth through learning and doing. I’m also re-writing our farm business plan to assess how we are doing and where and what we can expand and assess if it will have income.

What I do know, is that life is too unknown not to follow my heart. It’s too short not to take the path that is satisfying, empowering and nourishing.

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what is there to say

I haven’t posted in a while. I think about things all day, but they aren’t always translatable to words. Maybe it’s “chemo brain” – I notice when I type, I spell more words wrong than I used to or forget a word hear or there in a sentence.  I’m told chemo brain is temporary.  I was always forgetful, now it’s more so. Maybe it’s just fatigue – I don’t sleep that well.  How can I sleep with so many thoughts running through my head and so little positions my body finds comfort in while laying bed? Maybe it’s just the way it is – cancer is a huge distraction to everyday things.

Today is the last day of treatment 8. I feel nauseous for the 3rd day in a row and my mouth tastes like chalk. After thrashing in bed from 10pm – 1:30am, I succumb to taking ambien. I sleep until 10:30am.  Steve is away, the dogs don’t mind the sleep in, but I missed the yoga class I wanted to go to. And my light headedness keeps me from being able to go to the farm to check on the sheep and pick up some packages from the mail. I feel defeated.

chemo pump when empty, waiting to be "de-accessed"
chemo pump when empty, waiting to be “de-accessed”

At treatment 8 they warn me that the Oxalyplatin drug, the one that causes neuropathy and lameness, also can cause an allergic reaction at about the 8th treatment. So I wait, for 6 hours in the chemo chair, wondering if the tickle on my fingers in an allergic reaction or just a tickle. ‘Luckily’, I was fine. They can keep giving me the drug. I feel an odd sense of relief.

They test my blood before every chemo treatment. My tests say I’m strong and “doing well”. My white blood cells, hemoglobin, hematocrit, and neutrophiles are all in the normal range. This means my body is handling pints of toxic poison that is killing any cancer cells. I wonder what else these toxins are doing to the healthy parts of my body… to the REST of my being, that doesn’t have cancer. I feel confused.

Steve left town yesterday and before he left he did all the laundry, made the bed with clean sheets, did the dishes and made sure I had somebody to keep me company and bring me dinner Thursday night. I feel so loved and grateful for all he is.

Once the pump is removed today, I have 4 treatments left.    Four.   Yep – four is less than five.  Five felt like a lot.  But 4 is more than 3 and 3 feels like it’s actually getting close to 0.  5>4>3>0. But 0 does not equal ‘done’.

The mind is a funny thing. These numbers are so close to each other but subconsciously, each one has a very different effect on my psyche. None of these are numbers I want or find solace in. Zero means no more chemo, but it’s still 1 month before I have another surgery. It’s 6 weeks before I can consider laying on my stomach like a normal human. It’s 2 months before I can swim. It’s 24 months before we can consider having children.  I feel unsatisfied and impatient.

I long to have days when I can write about the new house we are building, or show you pictures of a new baby.  Counting days till the end of chemo isn’t sexy, fun, celebratory or anything of the like.

cancer is a big f*in deal

Somebody asked me how I am feeling the other day. I answered “okay”. And this person continued to say that what I’m going through is a “Big Deal”.  And you know what? It is. Cancer is a big fucking deal.

It’s not about what treatment number I’m on or how I feel at this moment because having cancer is so much more than these facts. Cancer strips you raw of facts. It stabs you right in the emotional gut of your heart, where it aches the most. The ache takes the form of sadness, uncertainty, and fear – this is grief. And it turns out I’m in the heart of it.

Most of the time, I would say, I’m rather bright and cheerful. My energy level is good, I spend time with friends, get out on the farm, take short walks, work a few hours, and I still practice and teach yoga. Mostly this is a time of self-care that I’m grateful for – my physical health and well being come before anything else these days. But this, apparently, is the easy part.

In between the days of smiling and feeling confident about this journey, the raw honest truth is that cancer is a fucking big deal and it really sucks. And despite the full moon or the bright shining sun, chemo weeks only bring darkness to my days.

I’m on treatment 7 of 12, so – yep – we can start the countdown. But the thing is, once the chemo is over, I’m not even close to being done. There is no “done” with cancer. I have 6 years! of follow-up tests until I’m out of the woods of colon cancer.

I overheard a woman complaining earlier this week about how busy and overwhelmed she was with her Master’s program, how she didn’t get days off to spend with her husband, how if she takes a day off it just makes her more swamped with work. But luckily, she said brightly “I love the subject”. I paused. I took a breath. I tried not to let her attitude bug me, and I tried to find empathy within my heart. But at that moment I was heading home to get ready to get pumped with chemotherapy drugs via an implanted port in my chest. I DID NOT CHOOSE cancer. Cancer is not a subject matter that excites me. Rather, it scares the shit out of me. And I will not be “done” with cancer in 1 or 2 years like this woman getting her Masters degree.

July 16th our lives changed. Everything we thought was in our plan has now become unknown accept the love Steve and I have for each other and our commitment to this love. I hope to whatever higher being I believe in that this love is enough. Because right about now, it feels like everything Steve and I have longed for and put our collective energy towards is slipping through our finger tips. And we can’t hold on to it anymore.  The home we were planning on building this fall is now on hold. We hope it will happen in the spring, but last month I was laid off from my job at Cornell so our financial future is unknown. We have begun to reassess our farm plans and goals and decide what changes we need to make; expand, downsize, something else? Last week we were told that my ability to birth a child is possibly significantly compromised because of the chemotherapy. We won’t truly know for years.

I wonder as I can’t fall asleep; How did I, how do we as individuals let ourselves go through life bitching about things that we have to do or that are happening to us that are totally under our control – choices we actually made for ourselves? We all do it. And those around us accept it, but now this seems lame. If we make choices, we should take responsibility for these choices. It doesn’t mean things won’t be hard – they will be – or you can’t take a few steps back and choose a different path, but bitching through the journey isn’t productive for anybody. Nobody made this woman sign up for a higher degree. And who doesn’t want their education to be challenging? Isn’t that exactly what a graduate student wants – to be challenged, inspired, to work hard and to learn new things about a topic you love? How can this woman bitch about this? I’m not saying I’ve never complained about things I can control, I certainly have! But I’ll tell you – having cancer sheds new perspective on reality. It sheds light on what is controllable and what isn’t. It brings clarity to what is worth expending energy on and what is a waste of emotions. I hope this is a perspective that sticks with me for the long haul.

Little is known when you’re on the cancer path. There are very few “choices” you get to make once you’re diagnosed. Chemo treatments: 12. Chemo drugs: 5. Surgeries: 4. There are no choices on these things. You hope to see friends today but you’re nauseous so your day now involves lying on the couch and hoping the pill you took makes the funny feeling in your gut go away. Typically, the nausea goes away but the ache in the gut seems to be around for the long haul.