Wednesday, August 22, 2018

A Reprieve, A Rejoicing

Nine months ago my husband Jim was given a diagnosis, Stage 4 colorectal cancer - 2 years plus medical discoveries.

Today the doctor entered the examination room with a wide open grin and a handshake, the tumors continue to shrink exponentially, the prognosis pushed out into the future.

Breathe, I can breathe. Sleep, I may sleep. My mind resettles, there can be more.

Faith, in my husband, in my prayers, in those friends and family who have prayed, in science, in naturopathy, in our children, in humor, in exercise, in dogs, in laughter, in love.

Multiples of unending nights of prayer to my mother, to all mothers, to Maya, perhaps the best way I can even try to express this joy is in Mary's prayer "The Magnificat". Tonight that is what I share. Though I may have been and continue despite my best efforts, to be too proud, conceited, frightened, or much too well fed, despite my failings and faltering attempts to be more, God has always been here,
Μεγαλύνει ἡ ψυχή μου τὸν Κύριον καὶ ἠγαλλίασεν τὸ πνεῦμά μου ἐπὶ τῷ Θεῷ τῷ σωτῆρί μου,
ὅτι ἐπέβλεψεν ἐπὶ τὴν ταπείνωσιν τῆς δούλης αὐτοῦ. ἰδοὺ γὰρ ἀπὸ τοῦ νῦν μακαριοῦσίν με πᾶσαι αἱ γενεαί,
ὅτι ἐποίησέν μοι μεγάλα ὁ δυνατός, καὶ ἅγιον τὸ ὄνομα αὐτοῦ, καὶ τὸ ἔλεος αὐτοῦ εἰς γενεὰς καὶ γενεὰς τοῖς φοβουμένοις αὐτόν.
Ἐποίησεν κράτος ἐν βραχίονι αὐτοῦ, διεσκόρπισεν ὑπερηφάνους διανοίᾳ καρδίας αὐτῶν·
καθεῖλεν δυνάστας ἀπὸ θρόνων καὶ ὕψωσεν ταπεινούς, πεινῶντας ἐνέπλησεν ἀγαθῶν καὶ πλουτοῦντας ἐξαπέστειλεν κενούς.
ἀντελάβετο Ἰσραὴλ παιδὸς αὐτοῦ, μνησθῆναι ἐλέους, καθὼς ἐλάλησεν πρὸς τοὺς πατέρας ἡμῶν τῷ Αβραὰμ καὶ τῷ σπέρματι αὐτοῦ εἰς τὸν αἰῶνα.[7]
My soul proclaims the greatness of the Lord,
my spirit rejoices in God my Savior,
for he has looked with favor on his humble servant.
From this day all generations will call me blessed,
the Almighty has done great things for me,
and holy is his Name.
He has mercy on those who fear Him
in every generation.
He has shown the strength of his arm,
he has scattered the proud in their conceit.
He has cast down the mighty from their thrones,
and has lifted up the humble.
He has filled the hungry with good things,
and the rich he has sent away empty.
He has come to the help of his servant Israel
for he has remembered his promise of mercy,
the promise he made to our fathers,
to Abraham and his children for ever.
Glory to the Father, and to the Son, and to the Holy Spirit,
as it was in the beginning, is now, and will be for ever.
Amen. Alleluia 

Saturday, August 18, 2018

Be Here Now and Other Ridiculousness

There is a fire merrily singing bass on the deck. The fountain and falls in the pond sing harmony in a tenor voice. On yet another note, albeit less discernible, the crickets, our harbingers of fall, sing in a higher key. Softy below it all, I hear the soft rhythm of my dear love's breath as he sleeps. Our sweet Springers curled at his feet and by his side. Every few moments they lift their noses to the air and then run in unison to some indiscernible sound I can not hear out beyond. The coyotes way out back have settled until the 10:00pm train so I do not worry. But perhaps the reality is that I am always on edge caught between Ram Dass' early thoughts in "Be Hear Now" and the actual nowness of one's love with Stage IV Cancer. 
The American heartland
"Be Here Now" was a profound work of the 1970's, aka my early formative adulthood. If you google Ram Dass now you can see his idealism facing life, confronting his bisexuality, his stroke which left him without speech, and late in life discovering he fathered a son 60 years prior. That may be life summed up sweetly. Intellectual idealism put to test. Love honored or not. 
It's been a pretty rough albeit encouraging and hopeful month or so for me. Rough: I'm stepping back from a job and college I love but at the same time that budgets are being cut, hard decisions made, and the college is closing the MakerLab that I founded and direct. Rough: chemo is getting more and more difficult, impacting Jim and my day to day. 

Encouraging: I was asked to and spoke at both Serious Play at U. of Buffalo and MIT's Connected Learning on work I have done as models nationally. Also awesome BREAKAWAY mobile, due to the leadership of an incredible grad student, Dana Steinhoff, and student leadership prior, will be released this fall and is awesome!!! Really fun, engaging, relevant, and timely and powerful at addressing violence against women and girls. In the same vein, due to the efforts of Dr. Helen Wang BREAKAWAY will be published in two upcoming publications.  Likewise awesome Sarah Jerger steps into my role as interim director of the EMC - and she deserves the opportunity! Other awesomeness, I have been invited and will attend a special brainstorming meeting at the UN on "the spiritual dimensions of real transformation and universality in the context of the UN Sustainable Development Goals". This is all so cool. 

Hopeful: Jim bought a camper and a new car! The biggest car I've ever owned, one hefty enough the pull the camper. We drove 3 days out to pick the camper up ing at KOA's and places that could accommodate these behemoths (at least compared to my tenting mindset). Yes I do worry about financially carrying this weight, at the same time, Ram Dass calls, "now is now - grab it". I believe he is right and I believe in Jim. 
Jim and the pups, our first journey
Yet no matter what bucket I put my thoughts into Rough, Encouraging, or Hopeful, my current reality is about love and cancer and looking at life in the "Be Here Now" framework. I have not written for awhile, or created any work, and struggle at times just to keep up. 

But here is tonight—my love lies sleeping having lived a full day. I've fed the pups, I've cooked, I've cleaned. I sit by this glorious fire on this incredible end of summer evening with crickets calling out, "this is what we have", and I breathe in and out, listening to his breath. This is our lives.

Wednesday, June 27, 2018

Mentors, Heaven, Hospital, and Home

Many moons ago, Father DeLeon was a teacher of mine at Cardinal Mooney High School in Rochester, NY (then Brother DeLeon). Through the positive's of social media, in recent years I've been able to follow him on Facebook. He has two types of posts, his sermons entitled WORDS FOR THE WEEKEND and shorter inspirations entitled SERMONS ON A STICK. As an example, a sermon recently was the following:
“My soul is from elsewhere, I’m sure of that, and I intend to end up there.” (Rumi)
Peony, a perennial that with proper care, returns year after year in my garden to bloom again.
Instead of working with teenagers, Father now is a hospital chaplain in the Albany area of  New York State. Today's post particularly struck me as it looks at the line between now and later, and the discoveries on the way. 
Regardless of one's belief systems, I wanted to share it here with you because as I said in a comment: As I walk besides my husband on his journey with cancer, we have also discovered your truth "...I regularly experience vibrant life—honest, pure, simple." Jim likes to say, "the loveliest people I've never wanted to meet." In this I have experienced a sort of 'resurrection' with the lines between now and next less defined. It feels as if when one has robust health, able to live according to the culturally prescribed plan: work, family, mortgage, hamburgers on the grill, wine cooling, vacations, retirement, etc., a diagnosis and the thought of living with a fatal or chronic disease is unimaginable and life-stopping. However what we have found is that life can be even richer in ways never imagined because of love - and the love of those who were once total strangers. This may seem to be an unusual way to experience heaven now but it gives me a deep and abiding gratitude.

And I would add to my posted comment, it gives me a deep gratitude and appreciation of now. What helps me to manage the stress, fear, and uncertainty is this gratitude and my faith in God (or whatever one may call the divine) and the beauty of the human heart. 
Hospital garden, view from oncology at UVM Medical Hospital.
Father's thoughts to share:

July 1, 2018; 13th Sunday in Ordinary time; Mark 5:21-43
Fr. Robert deLeon, CSC
“Jesus said, ‘Do not fear, only believe. The child is not dead but sleeping.’ Jesus took her by the hand and said to her, ‘Little girl, get up!’ And immediately the girl got up.” (Mark 5:36, 39, 41-42)
What is death? I’ve been intrigued by this question with its illusive answer as far back as I can remember, the many pet graves in our backyard attesting to my fascination with the beyond. How many beloved birds, fish, hamsters, and turtles were laid to rest as I presided over the burials. What is this thing DEATH?
Just recently, in casual conversation with a hospital colleague, I was asked what I might have become were I not a priest. I heard words emerging from my subconscious, “I think I’d be a funeral director.” A bit stunned by what I heard myself saying, I realized that the question—what is death?—remains a gnawing mystery.
Divine Providence, I believe, has led me to become a priest and a hospital chaplain, has led me to the very center of the continuing search. Indeed, I have been walking through the valley of the shadow of death for many years now. And here, where one might expect to encounter dismal darkness, I regularly experience vibrant life—honest, pure, simple.
The gospel passage we hear today invites us to consider the mystery of death. By the example of Jesus, we are challenged to put our faith in God who is Lord of both the living and the dead. When approached by the grieving family of a young girl who has just died, “Jesus said, ‘The child is not dead but sleeping.’ Jesus took her by the hand and said to her, ‘Do not fear, only believe. Little girl, get up!’ And immediately the girl got up.” (Mark 5:36, 39, 41-42)
Now, it could be that the girl really was only asleep, not dead, and Jesus was the only one to perceive the truth. More likely, I believe, is that Jesus is speaking metaphorically of death. The little girl was truly as dead as dead could be. Were it not so, Jesus raising her would be no miracle at all, only an abrupt arousal from her nap. And we must keep in mind what the gospel doesn’t reveal: while Jesus did raise up this little girl, she eventually died and stayed dead, as did every one of the other miraculous resurrections Jesus worked as related in the gospel accounts. Death is the only doorway to heaven, and Jesus greatly desires heaven for all of us.
What, then, to make of so many questions about the meaning of death? We have to admit that there is just so much we do not understand, even about our physical, observable world. A news report reminds us that we don’t know nearly as much as we think we do: “Soon after scientists landed by helicopter in Indonesia’s Foja Mountains, an area in the eastern province of Papua with roughly 2 million acres of pristine tropical forest, they stumbled on a primitive egg-laying mammal that simply allowed itself to be picked up and brought to their field camp. Describing a ‘Lost World,’ apparently never visited by humans, members of the team said they also saw large mammals that have been hunted to near-extinction elsewhere and discovered dozens of exotic new species of frogs, butterflies and palms.” (Associated Press, February 8, 2006)
If we have not yet discovered all there is to be discovered in the physical world, how much of the spiritual must yet remain a mystery to us. How much remains to be comprehended only by heaven’s glorious light!
While I don’t expect my curiosity about death to be stilled during my earthly sojourn, the journey towards an answer is not in vain. Daily it thrills me, the unaccustomed intimacy with those at the edge, with life at its most honest, pure and simple.
Until that day of final revelation, then, let us strive to content ourselves with Jesus’ words in the face of the great mystery, “Do not fear, only believe.”
Sunset from our front porch, the promise of tomorrow.

Wednesday, June 6, 2018

Day 3, Saints Claire and Francis

It's quiet here. Really, really quiet. Since I got home at 5:30. Fever, Tylenol, sleeping on the couch. I remember my friend Charlie whose wife survived cancer saying "let him sleep".  So I do.
The planned dinner instead becomes left overs, I feed the dogs. I look for beauty in our gardens. I pray to the saints there.

And I miss his energy. I worry. I am lonely. I am a bit frightened for the future. But I let him sleep.
Six months in, I do not panic. I do not call Cathy, my BFF, his sister, the retired oncology nurse, as I have every other time. I think I have his. I check his forehead multiple times. I remember that he is doing really well. This is all part of the journey.

In the early morning I dreamt of my sister-in-law Claire. In many ways she was my big sister. She was so full of life that life couldn't contain her. So much laughter, so many fun times, so many deep times. Jim and I visited her just a year or so shy of her death from cancer. How do you define love? Perhaps because those you love are always in your heart.

In my dream she was as bright as life. I was walking through a setting much like Harry Potter's Diagon Alley. Shops and mazes and unknowingness. And there was Claire! She had a second hand shop full of all sorts of wondrous second hand treasures. We laughed, we hugged, we danced. So happy to see each other. And she presented me wth a pair of tap dancing shoes the color of her red-copper hair pre-cancer with satin ribbons and stacked heels (heals?). And I danced, I danced. In waking I could not doubt the reality. It was as if I was visiting with Claire in heaven and she was SOOOO happy.

This afternoon, I bought a St. Francis that I had seen in my mind's eye and then discovered in an antique shop on my way back to work. The patron of the sick, the forgotten, of nature, of rebellion...of healing.

Tonight I thank in my heart all those in my life. I tried to call a few but it is late. I can not sleep. But there is the beauty of the gardens and of the saints.

Monday, June 4, 2018

Wisdom of Others

This last week has been glorious. Really the word GLORIOUS—angels coming down from puffy white clouds in heaven and everything. And it has been truthful. It is true what they say about chemo, it is cumulative with side effects multiplying overtime. As a result, in the prior two weeks, Jim never quite got back to his full energy self that is until the last three days. But then in those three days those clouds opened and the sun began to shine. Jim being the fortune teller he seems to be, saw bicycling weather ahead. With these compounding factors, he asked for an extra week free from chemo. And Dr. Greenblatt, looking at his stats, agreed to it. The heavens then chimed in and gave us a stretch of beautiful blue sky days. Jim upped his mileage on the bike and refinished our garage!

On my end, I pushed my gardening a bit too far—moving 3 yards of compost, double digging a 20 square foot plot, and planting a tree—and not surprisingly, threw my back out.

But here it is, we enjoyed the week immensely even taking an eight mile bike ride together in South Hero on Sunday. Every little thing—beautiful. We stopped at Snowflake Winery, sat out on the verandah, and I shared with Jim, that since his cancer, all the normal upsets of everyday life are no longer upsetting and instead what I see is the beauty in everything.

A friend of mine, writing about his partner who is recovering from a  severe stroke wrote recently:
"There are many things in life that aren’t compromised by disability.  Sometimes a lack of capacity in one area increases your sensitivity and appreciation of simple things.  It’s a gift."
And honestly this is perhaps the best way of putting it. We experience the darkest possibilities and then we experience a profound paradigm shift and see differently.

Today Jim was in chemo. Just before the Benadryl (used to counteract the chemo effects) kicked in, I shared this with him and said to him that it seems weird but "thank you". This was heard by his oncology nurse who then shared that in all her years, it is the couples who thank each other who have the strongest relationships.

Perhaps that uncovers a deep truth, those who are able to say thank you to life, have the deepest joy.

Wednesday, May 30, 2018

Thank You

If you find yourself half naked
and barefoot in the frosty grass, hearing,
again, the earth’s great, sonorous moan that says
you are the air of the now and gone, that says
all you love will turn to dust,
and will meet you there, do not
raise your fist. Do not raise
your small voice against it. And do not
take cover. Instead, curl your toes
into the grass, watch the cloud
ascending from your lips. Walk
through the garden’s dormant splendor.
Say only, thank you.
Thank you.

—Ross Gay

Friday, May 18, 2018


It is amazing.  One day to be overwhelmed with grief and then today full on JOY!
I'll take it. It is wonderful, it is deep, it is true.
Full of joy and thankfulness. Today.

Thursday, May 17, 2018


Just a quick post as a recommendation. This author, a former oncology nurse, nails it in what it is like on this cancer journey. I think for myself as a spouse, the loneliness and feeling of being left out —sometimes because of treatment schedules and side effects but also because folks (well meaning or fearful, at work and at play) tend to shy away from inclusivity of those with cancer, and of course the inability to be able to make plans ourselves. Spur of the moment works better - and shares more.
About The Writer:Lindsay is a mom of two sweet kids, wife, and proud Kansas Citian. She worked as an oncology nurse nearly her entire adult life. She thought she knows what patients go through when they are given a cancer diagnosis, she didn’t. On September 2016 she was diagnosed with stage 3 colorectal cancer and her own journey began. Follow her thoughts from both sides of the port at Here Comes The Sun and you can also follow her on Instagram.
And for a wee bit of joy, the lovely garden that can be viewed from inside UVM's oncology unit this week.

Wednesday, May 2, 2018

She Sits

As the dogs and I hurry about intent on starting our day, 
She sits. 
Soft as a cat, 
grey as the guardian fir, 
as motionless as the branch she perches upon, 
the owl awaits the first stirring of her morning meal.