October 26, 2013: In Remembrance

Dear Power Of Two supporters:

Thank you for your ongoing interest in The Power Of Two. For many years, Ana and I have tried to be beacons of hope for those living with illness and transplantation. I believe our hope could never manifest itself in any promise that we’d live forever, but rather, to be a hope for living a truly full, joyous and intention-led life, despite all physical obstacles. And now, my wish is that we can still be a hope for a graceful and surrendering conclusion to this wondrous adventure called life.

With that, I am deeply saddened to report that Ana lost her battle with small bowel cancer on September 22, 2013. It has already been six weeks since my broken heart has beaten alone and apart from my twin. I am still around, still breathing easy, still eager to live for myself and for Ana. I am now The Power Of One.

This weekend was Ana’s extraordinary Celebration of Life and we appreciate the 400 people who attended to honor Ana. The warm day, the church in the redwoods, the speeches of Ana’s closest family and friends, the music, photos, 1000 paper cranes, butterfly release, prayer flags, memory urns, sushi and German pretzels, tables of memorabilia, seed favors, the hike the following day…. were all perfectly representative of Ana’s essence. We could ask for no better send-off.

Below is an email I wrote the evening Ana died. I would like to share it with you:

***
9/22/13
Dear Friends and Family:

As many of you have already seen on Facebook, my best friend, soulmate, partner-in-life, and sidekick, Anabel Mariko Stenzel, left this world around 9:30 AM this morning. Ana was the power behind the power of two; her feistiness, dark humor, angst, bossy leadership, tireless energy and fierce willpower have been a driving force for me and all that we have accomplished together. In her death, it was SO Ana to reach her goals: to “make it to the fall,” as she had hoped; to die after September 21, as she had hoped; to being dying on Saturday and die on a Sunday so friends/family could be present; and to not die on our friend Robin’s birthday yesterday. She pulled through the long night, with me by her side from 11:30PM-5AM, and Trent from 5-9AM. Our parents arrived this morning, and my mom made breakfast. Most of us stepped outside her room to eat. Trent and mom were with her when her breathing suddenly slowed, and she took her last breath around 9:30 with all of us surrounding her. Sadly, my brother was planning to come at 9AM but Ana was stable, so I told him to come at 10AM.

Ana had a rough week, yet on Thursday and Friday she had a spike in energy, saw a few visitors, tried to do the dishes, write thank-you notes, and tidy her home, and she even enjoyed her favorite beverages and jello. After two better days, Ana experienced an acute pain crisis starting Friday evening. Trent and I and the dedicated Mission Hospice team (especially Dr. Gary Pasternak) did our best to help her find relief. Ana did not want to die; she wanted to stay here with us, and her ability to tolerate extreme discomfort to hold on was beyond what most human beings are capable of. Dr. Gary guided Ana this past Wednesday as he recommended her to stop her IV fluids, with tremendous patience and presence, to come to a place of surrender. Her biggest worry was that she’d be “giving up” if she let go.

Ana led a defiant fight until the end, fighting with me to brush her teeth by herself on Friday night after 8 mg of Dilaudid. Thankfully, Ana was breathing easy throughout her dying; both her lung donors and their families are in my thoughts today as they may experience a secondary loss with Ana’s death (we will cremate her with a photo of James Dorn, her first donor). To return the gifts she received, Ana is being evaluated to be a tissue donor with the California Transplant Donor Network.

Both Saturday evening and this morning after her passing, a small circle of Ana’s closest friends were with us. These friends have brought abundant food to share and we have all been taking turns to be present at Ana’s bedside. As we watched her body make its transition, each of us absorbed her zest for life and showered her with immense gratitude and love. Trent and I have been surrounded by love and care, which has been immeasurably helpful.

I am sitting with Andrew at Ana and Trent’s home tonight. There is a huge hole in this home, but we are feeling close to Ana now. We didn’t want Trent to be alone. We are eating watermelon, pizza, soup, chicken and all the gifts that visitors have brought today. There is much to do in the days ahead, but we will likely have a celebration of life in late October. Stay tuned.

I am half the person I have been; it will be a long and windy road to find equilibrium again in my life without Ana. She indeed was “the best of the best,” as our friend Tom said today in an email. I reflect on the last 16 days that Ana was home on hospice, and the last few weeks prior to that; and am amazed at the continuous stream of visitors that came to Ana’s side. The well-wishes, cards, packages continued to come in even as she was too sick to read them all. Despite the merciless pain of CF GI cancer, and her lifetime of physical challenges, I do believe that Ana would agree that she had a “good” death at home, soaking up to a point of saturation, the love from all her friends and family. Before Ana left our home, our friend Joi Spencer led a beautiful prayer as we circled around her. She’d be pleased. Ana will even be cremated with a bag of notes, photos and origami cranes to send her off into the other world. She has never been alone.

I am not ready for phone calls; but appreciate the overflowing emails, texts and Facebook posts. It’s so humbling to witness the impact that Ana has made in people near and far. She kicked some serious ass.

Not to be presumptuous, but please no flowers, but we appreciate the intention and thoughts.

I will sign off with Ana’s favorite quote, which so accurately describes how she’s lived her life:

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!” -Hunter Thompson

Thank you for your role in enriching Ana’s “ride”, in holding her memory tonight and in your days ahead.
I love you all,

Anabel’s twin,

Isabel Stenzel Byrnes

***

No one likes to hear stories of someone dying. It can be traumatizing and bring up anxieties that each of us have about death. But the reason I share the email above is to comfort you. Ana and I have fought the demon called death all of our lives. We have lived intentionally and deliberately to stave off death and to truly live. Ana’s end proved that one thing transcends more than death itself: love. Ana’s love for life and for others lives on in me, our family, and Ana’s countless friends.

I will write more in the days to come. I am deeply grateful and humbled by the ongoing condolences that have come to me from friends and strangers— so many that I am unable to reply to them all. Thank you. With all my heart, thank you.

Long live Ana Stenzel. Love live The Power Of Two.

Isa

PS: A memorial fund for CF-related gastrointestinal oncology research (an unmet need) has been created. Please make checks payable to UCSF, writing “GI Oncology Research in Memory of Anabel Stenzel” on the memo line, and send to UCSF c/o S. Krumholz, P.O. Box 45339, San Francisco, CA 94145-0339. Or donate online at https://makeagift.ucsf.edu/stenzelfund. Donations to Cystic Fibrosis Research, Inc. (www.cfri.org) and California Transplant Donor Network (www.ctdn.org ) are also welcome.

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