This will be the final post

At 2:00am on October 2nd, 2016 Naomi Beth Sichler died peacefully at home surrounded by her family.

We were both always floored at the effect this little public notepad could have on others, and have been overwhelmed with the support we received over the years. We always wondered why people were so interested in the way we lived our lives together, when to us, we were just trying to enjoy each other.

I have so many thank you’s to deliver due to the expansive amount of help and love we have received, that I am bound to miss a few, but know that we could not have loved each other and lived so richly had it not been for the help of so many. Naomi always reminded me that people seemed to run towards us, not away, when they found out about her diagnosis. In this way we were lucky, unfortunately, this is not always the case.

First off, thank you to Skirball Hospice for providing some of the finest care imaginable during this time. Your professionalism and compassion instilled confidence and peace. The constant calls and texts from nurses not even on duty, shows how much you all truly care. Your presence during our time of need allowed, and even made possible, a beautiful end to Naomi’s journey with us.

Thank you Compassion & Choices for being such strong advocates for the terminally ill. Although Naomi chose not to take the aid-in-dying medication, the relief it brought her to know it was an option is something all terminally ill patients should be able to feel.

Thank you to our team at UCLA. Despite Naomi being a USC Trojan, she didn’t trust anyone else with her care. Dr. Nghiemphu, Nanette, Tom, and Cheryl, you all made us feel that you cared about us as people, not just patients.

Thank you to everyone who came out of the woodwork to show us support in the form of cards, flowers, clothes and blankets, rides to doctor’s appointments, food deliveries, and apartments to stay in for family members from out of town. This list is larger than the internet, but thank you all.

To my family – Thank you for accepting Naomi as a daughter and sister. She got unfathomable joy from knowing her family had doubled. Thank you for helping us enjoy the small moments in life through cards, books, and many other actions that let us know you were thinking of us. Thank you for instilling my sense of family, compassion, humility, and caring that helped me provide Naomi with strength when it was needed.

Thank you to Naomi’s family. Eleanor, John, and Tim my heart goes out to you. You were the fortunate ones who knew Naomi the longest. Thank you for raising and supporting the most authentic, strong, loving and thoughtful woman I ever met. Eleanor – Thank you from every inch of my soul for putting your life on hold on numerous occasions to help us maneuver our way through this disease. Thank you for your positivity. Thank you for supporting me as well over all these years. The expansiveness of your love knows no bounds. John – Thank you for being such a steady presence at all times. I know Naomi’s calmness in the face of adversity came from you. Tim – Thank you for your unflinching loyalty, friendship, and comfort to not only Naomi but to me. You and Naomi were always looking out for each other and shared a relationship that she treasured like none other. I am truly blessed to have you all in my life. Knowing that Naomi’s blood runs through you brings me much needed solace.

Thank you to our friends. Vast barely describes this list and the amount of thank you’s to include here so I’ll keep things general. Your words and actions have left me astonished, and floored as to how we could be so lucky to have such amazing people in our lives. Thank you all for helping us have a good life worth living. We are forever thankful for your generosity, loyalty, shoulders to cry on, hands to hold, firm hugs, smiles shared, heartbreaks comforted, and celebrations together. I have no doubt we will carry on Naomi’s legacy together.

Lastly, thank you Naomi, for pouring your soul into this blog and into our relationship. Your openness and authenticity shined through in all that you did. Thank you for getting the broom out and helping me sweep up the pieces of my shattered life. Thank you for taking a chance with me and milking every ounce of love out of our all-too-brief time together. Thank you for pushing me to be a better person; the best version of me. Thank you for being fearless and honest. You have made an irreversible impression on my being. Every step I take in this life will be made with you. I am left with a void the size of the universe in my heart, but I thank you for bringing such amazing people into my life to help me grow around that void. Thank you for bringing me way more than net-joy. I love you.

We are all Naomi’s brain,

Mike

Memorial Service Details

Anyone who has been impacted by Naomi’s journey is welcome to attend a memorial service celebrating her life.

Date: October 30, 2016

Time: 12-3pm

Location: Ahmenson Senior Center at Expo Park

Parking: There is limited free parking on S. Park Dr, but many available lot and metered spots on the streets surrounding the center (Bill Robertson Ln and Martin Luther King Jr. Blvd).

Donations: If you would like to send a gift or condolences, here are two organizations that provided us guidance and information that was paramount in our navigation of this disease.

Simms/Mann Center for Integrated Oncology

Cancer Support Community – Benjamin Center

the light of the world

Mike and I just finished The Light of the World: A Memoir, by poet and essayist Elizabeth Alexander. The book is written in the most heartbreakingly beautiful prose I have ever had the privilege of reading, and I recommend it most wholeheartedly. Elizabeth lost her husband, Eritrean-American chef and artist Ficre Ghebreyesus, to a sudden heart attack in 2012. This tender series of vignettes is as much a celebration Ficre and Elizabeth’s extraordinary love — not just for each other but for their sons, their families of birth and choice, and their African-American culture — as it is a deeply intimate sharing of the grief that accompanies the loss of a beloved spouse.

We took turns reading the book aloud, and — more often than not — I had to cede my turn to Mike because I couldn’t read through the tears. Tears of sadness, yes, grief for myself and (even more) for Mike, whom I wouldn’t trade places with for the world. But also, tears of joy and gratitude that we’ve shared the same luminous, transformative love as Elizabeth and Ficre, a love that has touched and molded our lives as individuals and as a couple — and has rippled outward in concentric circles through lives of our families, our friends, our acquaintances, and even people we barely know. Tears of appreciation, too, for the the opportunity to have found and read this transcendent work of art and to know that its beauty will remain and touch others long after I’m gone. If something I write can make a fraction of the impact on someone else this book made on me, I’ll feel like I’ve truly accomplished something as a writer.

Ficre’s own words from a 2000 artist’s statement capture the power of art in discovering and defining oneself:

I started painting ten years ago, but I suspect I have been metaphorically doing so all my life.  When I started painting, I just did it.  I had never felt a stronger urge.  The pieces that flowed out of me were very painful and direct.  They had to do with the suffering, persecution, and subsequent psychological dilemmas I endured before and after becoming a young refugee from the Independence War (1961-1991) in my natal home of Eritrea, East Africa. Painting was the miracle, the final act of defiance through which I exorcised the pain and reclaimed my sense of place, my moral compass, and my love for life.

For Elizabeth, her medium is clearly language. Here are just a few of the passages that touched me:

How many times that day and in following days and weeks and months did I say “my husband.” My husband died unexpectedly. I just lost my husband. Lost implies we are looking, he might be found. I lost my husband. Where is he? I often wonder. As I set out on some small adventure, some new place, somewhere he does not know, I think, I must call him, think, I must tell him, think, What would he think? Think what he thinks. Know what he thinks.

Now I know for sure the soul is an evanescent thing and the body is its temporary container, because I saw it. I saw the body with the soul in it, I saw the body with the soul leaving, and I saw the body with the soul gone.

Each of us made it possible for the other. We got something done. Each believed in the other unsurpassingly. In all marriages there is struggle and ours was no different in that regard. But we always came to the other shore, dusted off, and said, There you are, my love.

Oh my darling, where did you go? How powerfully I feel you are somewhere, but not here. You come to me in another dream with a missing tooth and an unfamiliar red jacket…Do you make friends and have companions where you are? I thought all you needed was us.

As Elizabeth moves forward with her life, she writes powerfully about her proximity to death.

Death sits in the comfortable chair in the corner of my new bedroom, smoking a cigarette. It is a he, sinuous and sleek, wearing a felt brimmed hat. He is there when I wake in the middle of the night, sitting quietly, his smoke a visible curl in the New York lights that come in between the venetian blind slats.

At first I am startled to see him. He sits so near, is so at home. But he doesn’t move toward me, he simply co-habits. And so, eventually, I return to sleep. He isn’t going anywhere, but he isn’t going to take me, either. In the morning, the chair is empty.

Which is stronger, death sitting in the corner, or life in New York City? Death, or my teenage sons, sleeping profoundly in the next room, growing overnight? “I love plans!” my new friend Esther exults, and so do I, for nowadays I feel like plans are all that stands between me and the end of my life. I’m not going to die overnight because next Wednesday, I am going with Esther to see an auction of nineteenth-century American documents at Swann Galleries. I’m not going to die tonight because I already took the chicken out of the freezer and Simon loves roast chicken and rice for dinner, and I promised him I would make it. I’m not going to die tonight because on Saturday Farah and I are bundling up and going for a walk against the blustery winds along the river, to continue the conversation we began almost thirty years ago when we were both in graduate school, before I even knew my beloved Ficre.

I’ve already revisited this passage repeatedly and expect I’ll continue to do so as I contemplate my own proximity to death and the tenuous hold I have on life. I’m making plans, too. I feel quite certain I’ll be able to make it to the joint birthday celebration Mike and I have planned with our friends on June 18 (an outdoor screening of Indiana Jones in a Culver City park), and on a little getaway to Topanga Canyon the following weekend for Mike’s 32nd, and probably to the 4th of July get-together at the Merendino/Williams pad in Pasadena. But the flight we booked to Nashville for Kate and Rob’s wedding in October? Death may have come for me by then, and my plans aren’t going to stop him.

learning to dance in the rain

Last summer, my dear friend Chelsea made me a paper chain — with one link for each day of radiation treatment. More than just a creative way to mark my progress through treatment, on each piece of the chain Chelsea wrote a meaningful quote by some of her — and my — favorite authors, poets and philosophers. I’ve been revisiting the stack of quotes recently and have found many to be timely and relevant to my present situation.

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The three pictured below, in particular, help capture the peace that found me during our staycation weekend at the Merendino/Williams pad in Pasadena. I find that it’s easy to breeze glibly by quotes like these unless I am intentional about pausing and thinking and allowing them to really reach me.

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I took the time today to sit with each of these three quotes and think about why it felt meaningful to me in the context of this special weekend. Here goes:

It’s not about waiting for the storm to pass. It’s about learning to dance in the rain. 

In the most literal sense, I was hoping for a warm, cloudless weekend that would allow us to take advantage of the pool at the Pasadena house. While the clouds did burn off in the afternoons, it was mostly pretty overcast and chilly. On Sunday morning, when Mike and I paid our friends Eileen and Ned a visit at their new house (affectionately dubbed “The Hobbit Hole”) in La Crescenta, it was actually raining. The misty rain, however, along with hot tea, coffee and oh-so-flaky pastries we picked up at Gio’s in Montrose, were the perfect backdrop against which to be introduced to Eileen and Ned’s quaint mountain cabin. The clouds also provided the perfect weather for sleeping in, napping, and just generally relaxing — something Mike, Tim, Jen and I took full advantage of during the entire weekend.

We must let go of the life we have planned, so we can accept the one that is waiting for us. — Joseph Campbell

Joseph Campbell has been a spirit guide throughout my entire journey with cancer, and these words have resonated with me for many years. This weekend was just another example of the gifts that are waiting when we are able to let go in the struggle to hold on to our hopes and dreams and accept what life is offering instead. In the case of this weekend, it was precious time with Tim and Jen, whom we don’t get to see nearly often enough. Interesting conversations about healthcare and food policy, hilarious stories about the antics, trials and tribulations of Jen’s fourth-grade students, and laughter over our fumbling attempts to deliver prompts in a game of Taboo.

We do not remember the days. We remember the moments.

Here are a few of the moments I’ll remember and treasure from this weekend:

  • Sitting with Mike, Eileen and Ned in The Hobbit Hole eating a crumbly, not-too-sweet, coffee-cake muffin, drinking a ginger hot tea and petting the kitty, Ginger.
  • Taking a sunset walk with Mike on a peaceful dirt path lined by mature trees.
  • Looking out toward the mountains from the patio with Mike and Tim sitting close by.
  • Gazing at Van Gogh’s Portrait of a Peasant during our visit to the Norton Simon Museum.
  • Enjoying a late-night donut meet-up in Eagle Rock with our friends Jeff and Ana.
  • Preparing a simple-but-satisfying meal of grilled kabobs and rice with Mike, Tim and Jen.
  • Lying in bed reading in the late afternoon sun and waking up an hour and a half later from a delicious nap.

We are SO grateful to our friend, Ted, and his parents, Gari and Ellen, for making this little staycation possible for us. It was the perfect location — not too far from home to make the drive uncomfortable for me, but far enough to make it feel like a real holiday-weekend getaway. I’ve loved the Merendino/Williams Pasadena home ever since Ted first introduced me to it in college, and it made for the just the change of scenery I needed to escape from purgatory for the weekend.

purgatory

Well, we’re officially in purgatory, and let me tell you, I don’t like it here. On Monday, we spoke with Dr. Taylor again, and UCSF’s tumor board has a significantly different take on last week’s scan than my team at UCLA. In short, UCSF believes the swelling that was present on my 4/9 scan is most likely a result of delayed-onset radiation injury (other terms for this are radiation infarct and radiation necrosis). Dr. Taylor believes that the significant reduction in swelling seen between the scans on 4/9 and 5/18 — along with the notable lack of tumor growth over that period — supports this explanation.

Dr. Nghiemphu and the UCLA team, upon additional follow-up, has indicated that their reading of the scans doesn’t support this explanation for a couple of reasons: the 4/9 scans (which showed significant swelling) looks different to them than the scans immediately following my course of radiation treatment last summer, when radiation necrosis was very apparent (and eventually went away, following a course of steroids). They are also interpreting what they’re seeing on the 4/9 and 5/18 scans as tumor growth and attributing the swelling seen on the 4/9 scan as related to that growth.

It seems to be a case of two respected institutions with good reasons for two substantially different interpretations of what they are seeing in two snapshots in time. 

Thus, purgatory. 

There is literally nothing we can do between now and my next MRI on 6/29 except wait to see which of these explanations is borne out by the next data set. Even my symptom progression is a relatively poor yardstick for determining what’s going on in my brain: Since we’re tapering the steroids in an attempt to find the minimum effective dose, there’s a chance we’ll go too low, which would allow the swelling — and symptoms — to return.

My state of mind is the most perturbed it’s been since receiving the initial news in April — maybe even more. I’d been prepared for the worst; it’s something I’d been preparing myself for for a long time. But I wasn’t prepared for this level of uncertainty. In the USCF scenario, we manage the swelling, and I continue to live with the same progonsis I had before April’s scan ever happened (which is to say, potentially for many years). In the UCLA scenario, we manage the swelling, but the tumor continues to grow at an unknown pace and I have anywhere between six months and a couple of years to live. (Of course, after a number of months have gone by, if I’m feeling much better, maybe additional treatment options would be back on the table, opening up more new cans of worms.)

My mind is spitting out what-if scenarios in rapid succession, unable to find a comfortable place to land. When I was definitely dying, I was okay with that. I was living in the moments and was grateful for each one. But now, I’m getting greedy. If more moments are available, I want them. How am I going to straddle this chasm between life and death for six weeks? How far into the future should we make plans? There are practical matters to be considered: the care I’ll need, health insurance, disability, student loans, cars, work, taxes.

Against this backdrop, we’re heading into our little Memorial Day weekend staycation. Friends have generously offered use of their home in Pasadena, and Mike and I will head up there tomorrow afternoon with Tim and Jen, who are already in town. I’m hoping the peaceful, nature-filled setting and beautiful home will help calm my spirits and return me to the moment.

In the meantime, I’m attempting to place myself in the spirit of this wonderful poem my social worker, Tom, shared with Mike and me from a recent mindfulness workshop he presented. Apparently, I have more learning and growing to do!

The Guest House

by Mewlana Jalaluddin Rumi

This being human is a guest house.
Every morning a new arrival.A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

radiant, even in darkness

this poem was sent to me by a dear friend and mentor who has been a guiding light and inspiration for me in recent weeks.  its evocative imagery and hopeful message touched me so deeply.

MOTHER WISDOM SPEAKS
(by Christine Lore Webber)

Some of you I will hollow out.
I will make you a cave.
I will carve you so deep the stars will shine in your darkness.
You will be a bowl.
You will be the cup in the rock collecting rain.

I will hollow you with knives.
I will not do this to make you clean.
I will not do this to make you pure.
You are clean already.
You are pure already.

I will do this because the world needs the hollowness of you
I will do this for that space that you will be.
I wlll do this because you must be large.
A passage.
People will find their way through you.
A bowl.
People will eat from you
And their hunger will not weaken them unto death.
A cup to catch the sacred rain.

My daughter, do not cry.  Do not be afraid.
Nothing you need will be lost.
I am shaping you.
I am making you ready.

Light will blow in your hollowing.
You will be filled with light.
Your bones will shine.
The round, open center of you will be radiant.
I will call you Brilliant One.
I will call you Daughter Who is Wise.
I will call you Transformed.

my aspiration is to accept with grace the hollowing of myself that has been brought about by cancer.  and to have the strength and courage to allow myself to be filled back up in ways i didn’t even know were possible.  and to emerge transformed: a passage via which others can find a light in their darkness.

thank you to all those who have made me believe this is possible.  i owe you a debt of gratitude i can never repay.