Quest for the Bench

Been missing Terri… So much…

As are Miss M. And Heron. And many of you.

I know because some of you reached out this week. Feeling the same ache. Missing her smile. Her light. Her irrepressible positivity.

Two weeks ago, Miss M and I channeled our grief by embarking on a quest to NYC to find Mamae’s perfect bench.

Terri wasn’t attached to Memorials. Or Funerals. Or Cemeteries.

Her requests were simple; a party-check, dancing-check, scattering some of her ashes in the ocean by her favorite city in the world- NYC, and maybe a bench in her memory, where we could sit “with” her at Astoria Park.

So a core group gathered- Miss M, myself, Erin and Matt, Grandpa, Auntie Mary, Uncle John, cousin Jeanne and Uncle Jim. Miss M brought along her brand spanking new magnifying glass to solve the mystery of which bench was pictured in a photo of Mamae, 9 months pregnant, sitting along side the two sets of overjoyed expectant grandparents.

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After a half hour of searching, our determined group was perilously close to frost bite. As the sun began setting on the Hudson River, Erin exclaimed, “There it is!!” In true Nancy Drew style, Miss M meticulously examined every inch of the bench. (Terri had asked Erin to turn Miss M on to her favorite detective series, hence the accompanying magnifying glass!)

Proclaiming the mystery solved, we hustled our freezing asses back to our cars and journeyed to Terri’s favorite Italian restaurant, Trattoria L’incontro, where we were led to the same exact table that Terri, Heron, Miss M, Nana Nana and I celebrated Marisa’s 1st birthday and Heron’s graduation. (Thanks Terri…) We savored exquisite Italian delicacies while reminiscing, reconnecting and reenergizing our heavy hearts.

I can’t tell you how deeply grateful I am for these moments of connectivity; of shared grief. They are incredibly powerful in tempering the ever present, heart wrenching pain of losing Terri. Soon enough, you too will have an opportunity to do the same.

Dori, Tanya and Erin are putting the finishing touches on Dori’s  hauntingly beautiful,  We’ll Find Our Way (Hymn For Terri), soon to be featured here on Terri’s blog.

Application for said bench is in process, and will be followed by a NYC Dedication Celebration in true Terri style, open to all.

In the mean time, I offer you this opportunity to join with me in remembering our beloved gracefulwomanwarri, Terri Luanna, by clicking on this link…  Terri’s Life Celebration

Love Auntie L

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Tributes to Terri…

“Winter, spring, summer or fall, all you have to do is call, and I’ll be there, yeah, yeah, yeah, you’ve got a friend.”
James Taylor

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Nicole, Amy, Terri, and Maureen

 

 

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I woke up this morning “filled” with all that is/was Terri. In my dreams. In my heart. In my soul.

James Taylor’s song, playing in my head.

So, on this New Year’s Eve, take a moment to remember our Warrior through the eyes of three of her BFF’s; Nicole, Irene and Amy…

A Poem From Nicole…

HIGH FLIGHT

John Gillespie Magee, Jr.

“Oh I have slipped the surly bonds of earth,

And danced the skies on laughter-silvered wings;

Sunward I’ve climbed and joined the tumbling mirth of sun-split clouds —

and done a hundred things you have not dreamed of –

wheeled and soared and swing high in the sunlit silence.

Hovering there I’ve chased the shouting wind along

and flung my eager craft through footless halls of air.

 

“Up, up the long delirious burning blue

I’ve topped the wind-swept heights with easy grace,

where never lark, or even eagle, flew;

and…while with silent, lifting mind I’ve trod

the high untrespassed sanctity of space,

put out my hand and touched the face of God.”

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Irene’s Tribute

28 years encompasses a whole lot of memories with my best friend Terri.

It was always Terri’s kind soul, her openness, her ability to make new friends wherever she went, and her fun and adventurous spirit that I admired most about her throughout our lifelong friendship. People were inexplicably drawn to her, as was I. Her zest for living in the moment and hunting down life’s adventures were so apparent and infectious even way back in high school. I remember one particular choir trip down to California. Terri and I convinced a few of our very straight and narrow choir friends to sneak out of our hotel rooms after bed check and party it up all night. We even hitchhiked part way back to the hotel in the back of a pickup truck with some random cute guys. I know…seriously…what were we thinking? But that was who Terri was. That’s who she and I were together…Adventuresome. She lived in the moment and her love of life positively radiated to those that surrounded her.

I also very clearly remember the day that we both decided to ditch our stable careers at IBM and Ogilvy Advertising in search of more foreign adventures. Terri called me up one day at work as we did whenever we were bored and said, “Where are we going next?” We’d both been talking about wanting to see Asia for a little while. I said, “If you’re ready to ditch your job and go give teaching ESL in Taiwan a try then let’s do it together.” Terri’s response was, “Are you serious Reen?” And I said, “Hell ya! When are we ever going to have another chance in our lifetime to do this together?” And that was it. Within the next few months we had both quit our jobs, drove across the country and flew out of Vancouver to Taiwan, ready to embark on our latest exploration into Asia.

There are so many other stories I could share with you about my adventures with Terri. But I think the final most important one was the leap we took together into this crazy journey we call motherhood.   There was no way I was entering this next stage of life without my bestie right there beside me. So what does any good girlfriend do when they don’t want to fly solo? We planned on having our kids at the same time. And you know what? The powers that be allowed it. My eldest daughter Kaya and Marisa were born a mere 3 months apart. What more could I have asked for than to have experienced one of life’s greatest gifts, motherhood, with one of my closest and dearest friends. I see so much of us in those two beautiful girls. I see Terri’s open and loving nature; as well as wisdom beyond her years in Marisa’s eyes. I also see a natural ease of friendship between these two girls despite the geographical distance and sporadic visits.

When I had the honour of visiting Terri just a month ago, there were two things that she whispered to me while we were sharing a quiet moment together. The first was, she told me to be the best mom that I could be. The second was that she wanted our girls to know each other. I plan on honouring Terri in both.

Terri, you have always been my best friend, my confidante and my sister from another mother. I will miss you like no other but like you said to me just a few short weeks ago, “I’ll see you when I see you”. And I know that knowing you…I’ll be seeing you in the most unexpected places while you move on to your next adventure.

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Amy’s Tribute

Hello, for those of you who don’t know me my name is Amy, and I’ve known Terri for as long as I can remember. I, along with Maureen, were lucky enough to grow up in the Patton Street neighborhood where Nana lived and Spider and Jeanne chose to send Luanna each summer. I will forever be grateful that they made that decision.

As I tried to figure out what to say about Terri and how to reflect on a lifetime of friendship, I realized that the idea of summer is, in some ways, the perfect metaphor for her. First of all, everybody loves summer and everyone I know who met Terri, loved her. Like the summer sun, she enveloped you in her warmth and she shined, she radiated, love, peacefulness, and grace. And, like most of us know, summers are always too short and are gone before we’re ready for them to be over.

So you have to pack a lot of things into the time you have and Terri was able to do that. She travelled the world, lived in the city that she loved, became a social worker, met amazing people, fell in love with the man of her dreams, started a beautiful family, and became a writer. Though not the writer she imagined, her blog has inspired, moved, and motivated people across the world.

She taught us all what’s important: to make the most of every moment, to live fully. In the short time that Terri was here, she blazed bright. And though we all wish we could have more time with her, I am so thankful that those summers forged a friendship that will live on through my memories and the friendship that our children will continue to have.

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Last but certainly not least, as you contemplate the new year before you, consider these words from Terri Luanna written on her spiritual pilgrimage to Europe a year ago.

Sure to inspire, Terri’s wisdom and joy de vivre offers each of us a  bold blueprint for a life truly worth living…

Happy New Year,

auntie L

 

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Terri’s “Big Idea”

“Why not think big? Dream big?

People may not get you- but the dreamers are the ones who change the world. When you honor yourself, everyone benefits.

Better to be true to yourself. Be different. Be unique. Honor your truth.

So dance. Love. Pray. Travel. Meditate. Learn. Grow.

Be inspired and inspire others. Be good to yourself and others. Find the beauty in life. Nurture you soul.

The time has come…”

Tributes To Terri…

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“Shared pain is lessened; shared joy, increased.”

Callahan’s Crosstime Saloon

Spider Robinson

 

 

 

On this bittersweet Christmas Eve, my heart and soul ache for the loss of my beloved niece…

I have learned over these last few weeks that my brother-in-law, Spider, was right. So, in an attempt to lessen my pain and increase my joy, I will be sharing excerpts from our phenomenal Celebration of Terri’s Life over the next few weeks. I hope it provides you comfort and inspires you to celebrate this holiday season wrapped in the warm embrace of your loved ones.

Terri Luanna da Silva

Welcome to our Celebration of Life for our beloved Terri Luanna da Silva, also lovingly known as our gracefulwomanwarrior. Today’s service, brought to you in true Rubbicco style, promises to be an extraordinary tribute to an extraordinary woman, full of powerful music, inspiring words, laughter as well as tears, and most importantly, per Terri’s request, dancing.

Marisa has her fabulous new rainbow dress on and her IPOD is ready to go. So we promise you, Terri, we will get this party started, just as you wanted.

But first… A few words about my incredible niece.

Where to begin…

Terri was my niece, my daughter, my sister and my friend. She was one of the most remarkable, brave, gifted, radical, compassionate and inspirational human beings I have ever known. She lived her life with a level of grace, compassion and a compelling wisdom that is very rare. And in doing so, inspired people all over the world.

And I do mean all over the world. The overwhelming reaction and response to Terri’s passing is truly mind blowing, to use a phrase frequently used by my sister, Jeanne. Blog comments, letters, and donations are pouring in from all over the world; Australia, Russia, Italy, Portugal, Brazil, Canada, Amsterdam.

And even… Macy’s department store at our very own North Dartmouth Mall.

I kid you not.

The other night, in an attempt to escape the ever present grief that consumes me, I decided to head to the mall for some retail therapy. I passed by a woman in the shoe department and our eyes locked for just a second. I smiled, as did she, and I moved along. A few minutes later I turned and there she was.

“Are you Dori’s sister?”

“Yes,” I replied.

“I thought so. I’ve seen you on Facebook.”

She hesitated for the briefest of moments, then said, “I had to come over and tell you how sorry I was about your niece’s passing.”

Tears sprung to my eyes.

“Thank you,” I replied, touched beyond belief. “I can’t tell you how glad I am you reached out to me.”

“No, thank you,” she answered. “I don’t know what it was, but I just felt I needed to come over to you.”

“It was Terri.” I said.

She smiled. “I’m sure it was. I can’t begin to tell you how inspired I was by your niece’s story. And by your family. You let us all in during such an unbelievably difficult time. We have such a hard time talking about death and you and your niece did it so beautifully. I just had to come over to tell you how deeply her story has affected my life.”

I went on to tell her how we plan to publish Terri’s blog, and as we talked more, our serendipitous connections continued to unfold as we made more and more connections around our work and our kids.

All thanks to Terri.

But that’s what our warrior did best. Connect. And she encouraged, no, she insisted, that we do so as well. And through that gift of connection, of unconditional love and light, she will live on. Through each and every one of us.

But most importantly, Terri will live on through her greatest legacy of all, the Magical Miss M. Marisa, you continue to amaze your Auntie Laurie with your fabulous sense of style, your crazy, silly, creative videos, your amazing dance moves, your ingenious imagination, and your magical presence. Like your mother, Terri, her mother, Nana Canada, and your Nana Nana, you live and love deeply. Auntie so looks forward to keeping Mamae’s love of life and adventure alive with you.

In closing, I want to say thank you to you, Terri, for welcoming me into your journey- of life, of parenting, of grief, of marriage, of friendship, of cancer, and of the special bond we have shared since the day you were born.

Love, auntie L

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Hubby and Nana Nana

Hubby and Nana Nana

Kids craft table

Kids craft table

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auntie L and grandpa

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Balloon Launch Message from Miss M- “Thank you for all of your love, Mamae…”

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Final Gifts

Our Warrior gracefully and peacefully journeyed “home” on Friday, December 5th, at 12:41 p.m…

Choreographing right up until the moment of her death, Terri Luanna waited for her beloved husband to arrive. Then, as in all she did in her brief life, Terri passed gracefully and in peace, surrounded by all who loved her dearly.

Terri also ensured Miss M was partaking in a fabulous adventure with auntie L at the time of her death, making sure I was almost home before Heron called to tell me that her time was imminent.

I was not destined to be by Terri’s side, literally, but rather to “unpack” her mother’s leave-taking as we had done with her mother’s cancer journey. The recurring message from our Warrior? Live life fully amidst the pain and heartache…

Heron drove to my home later that afternoon, where he found Miss M and her “favorite cousin” (her words!), Jamie, listening to their favorite pop music and doing art work between dance moves. Papai took Marisa upstairs to share the news. Soon after, they joined the rest of the O’Neil clan and it was Miss M, child of her mother, who again taught the grown ups that life does in fact go on.

Papai gave Marisa the blue light necklace from hospice, beautifully explaining its significance as he peeled off the paper, releasing a bright, iridescent blue glow.

“It will stay blue for 3 days because that is how long it will take Mamae to travel to heaven. She will always be with us and will visit us in our dreams.”

It was unbelievably heart wrenching to witness, but such an honor to call this incredibly loving family my own…

A few minutes later, Marisa asked about the play we were supposed to attend. Her “O’Neil cousin”, Lauren, was “starring in” (Marisa’s words again), our high school’s rendition of Scrooge and Marley, and Marisa had come home with me to see Lauren  make her stage debut.

“Do you still want to go?” I asked.

To which she replied,  “Yes!”

Of course she did… She is her mother’s daughter after all.

As soon as she arrived home, she melted into her Papai’s arms and went up to bed where he hung their blue light to watch over them while they slept. In the morning. Heron told me he held her close, telling her how much he loved her and how lucky they were to have been loved by Mamae. Then he kissed her cheek, she kissed his, and together, they blew a kiss to Mamae which they have done each morning since Terri’s passing…

On Saturday, we all gathered in CT.

To remember. To grieve. To celebrate.

And Terri continued to scatter her “Final Gifts”…

There was one in the red cardinal her friend Patty saw outside her kitchen window at 12:45 on Dec. 5th.

Another in the perfectly timed Happy Song that played 3 times in the car with Marisa the day she died.

And one of my favorites, the dance party Miss M orchestrated on Saturday, insisting we all dance to Mamae’s favorite “New York” song by Alicia Keys and Jay Z.

Our Warrior will be remembered most for her voracious and passionate love of life, her boundless compassion, and her deep and abiding faith in the innate goodness of human kind. The world is a better place because of Terri’s legacy of strength, hope, and commitment to living life to it’s fullest. Her indomitable spirit will live on in all of us; the people all over the world whose lives she touched…

Terri had one wish when asked how she wanted us to commemorate her life.

“I want a party and dancing…” Simple as that.

So that’s what we are giving her.

She also wants her ashes scattered in her beloved NYC as well as a commemorative bench in Astoria Park. This celebration will be open to all of you, her beloved army of soldiers, who bore witness to, accompanied and cherished our beloved Warrior.

We have set up a new gracefulwomanwarrior Memorial Fund via GoFundMe at gofund.me/icqknk, which will be used to fund Miss M’s education and cover any remaining medical expenses. A new button will be installed on this page (as soon as I can get auntie D over here to do it!)

In the mean time, please know that together, we will continue to keep Terri’s story and her legacy alive…

Love, auntie L

Celebrating Terri...

Celebrating Terri…

Visions…

The sun is rising and our Warrior is sleeping soundly beside me.

It has been a powerful week with our girl. Things have shifted in the last 48 hours…

I stayed over Tuesday night. It’s uncanny how in the wee hours of the morning, usually between 4-5 a.m., Terri and I have the most profoundly intimate interludes…

That morning she looked at me and said, “There’s these 2 Coast Guard guys.”

I said, “Tell me about them.”

“They’re nice… Good looking.”

“Are they dressed in white?”

“Yes, and they really like the ladies.”

“I bet that’s my Dad and Uncle Frank. They were in the Merchant Marines. Nana always said they loved the ladies. I think that’s your grandfather, Terri…”

“Yeah, I bet it is.”

I asked her if Jeanne had come and she said no…

We went on to talk about “home”. She said she felt like she had found a new “home”. I wholeheartedly agreed, citing the loving, compassionate care she is receiving; reflexology, reiki and massage at her fingertips,  a beautiful room filled with light and lovingly decorated by Miss M, friends and loved ones dropping by.

auntie Cole and I were up late that night talking, and talking and talking… Terri’s devoted BFF has not left her side and doesn’t plan to. We both wondered about what Terri was waiting for. Because that day she was clearly not ready to go.

She told Nicole she wanted to see Marisa. So on my way to see Terri on Tuesday I stopped and shared a magical bedtime hour with Marisa.

We sat together at Mamae’s altar, re-enacting how Mamae sat on her pillow, talking about what mediation is and prayer. About how Mamae will always be with her. That Mamae wanted to see her. So we made plans for me to pick her up after school the next day.

Then we read When Someone is Very Sick, a workbook to help children understand end of life. Marisa furiously worked on a drawing for her “special person who is sick” on the car ride to see Mamae.

I asked her to tell me about it. It was her and Mamae, with vibrant, bright colors, a sun shining and birds flying. Mame’s dress was particularly beautiful. The bottom was filled with flowers. I asked what was at the top.

“An x.”

“For love and kisses?”

“Yes. And for God.”

Out of the mouths of babes…

Although things started shifting for Terri Wednesday- lots of sleeping and glimpses into the other side, Marisa and Mamae had a lovely visit.

As I danced with auntie Cole to the “Happy Song” Marisa played for Mamae, I caught a glimpse of Terri’s arm, gracefully “dancing” in the air. Just as her mother’s had from her couch, the week before she died.

On my way home I put on my playlist from Jeanne’s Memorial. Shed a few tears but mostly felt numb.

Then, “Will You Still Love Me” came on. That is our “Jeanne song”, the one the five sisters sang to our mother whenever we gathered.

Then it played again… And again… And again… It played continuously, for almost 30 minutes, until I pulled into my driveway. During that time I communed with my beloved sister and her daughter, at times raging at the fates and at Jeanne’s inability to “save” Terri. But in the end, I pleaded with her to enfold her daughter in her love.

Things are shifting. Since Marisa’s visit Terri has been sleeping mostly. She occasionally asks us things like, “Are the papers ready?” “Does everybody trust everybody else?” She also told auntie Cole, “It’s so beautiful…”

Visions are the order of the day.

Together, we are all bearing witness to our Warrior’s incredibly courageous journey…

Love to all,
auntie L and Team Terri

popsicle cheers!

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A MESSAGE FROM TERRI…

auntie L here

My beloved niece has asked me to speak on her behalf. Sitting next to her in Chicago as she painstakingly “wrote” her last post, LIFE AND DEATH, was truly a humbling experience. She has been using a voice recognition program for some time, and that post took her 3 hours to complete. I offered numerous times to type for her, but the writing process is a deeply personal experience.

So I sat next to her, tears flowing, bearing witness to her compelling message.

And now, Terri has a new message…

In the end, our Warrior settled into a new “home” at the incredibly loving Weiss Hospice and Palliative Care Unit at Middlesex Hospital. The pure grace, compassion and comfort provided by the staff and volunteers in this exceptional place are truly like no other. Positive energy abounds.

Amidst the inevitable pain and discomfort of Terri’s disease…

The rehab we landed in after our miraculous Angel Med Flight was only to be a stepping stone for Terri. Team Terri (as we now call ourselves) was destined to take an incredibly frustrating journey from Mystic to Weiss. Suffice it to say, our medical system is infuriatingly inept at managing the “in between” transition from life to death. But I’ll save that dissertation for another day.

After much soul searching, our Warrior chose to move into a space of comfort and love, combined with the best quality of life attainable, in order to embrace and cherish those she loves in her time remaining.

So many things have happened since we moved here a little over a week ago. Within the incredibly heart wrenching emotions of this difficult journey with our beloved Warrior, the pure love is almost indescribable…

Like the moment I walked into miss M’s classroom to volunteer on her mother’s behalf and her face lit up with a kaleidoscope of emotions.

Or the tears of love and loss her hubby and I shared as we looked ahead at how to carry on Terri’s legacy of love for her daughter.

A 66th birthday celebration for grandpa form Terri’s room, officiated by none other than miss M.

A steady stream of her dearest, closest family and friends, surrounding Terri with light and love accompanied by deeply intimate exchanges.

A Thanksgiving overflowing with gratitude, love, family, music, beauty and sorrow within this end of life journey with our beloved Terri Luanna.

Terri told me that night she felt she was moving closer to dying…

She described it as feeling like she imagines dementia might feel, and she said I needed to tell all of you about it.

I asked her what she wanted you to know and she said, “Tell them it isn’t scary…”

She says it’s also a bit confusing and very “busy”. Lots of images, people, dreams and a sort of veil of uncertainty between realty and “something other”. Especially while she is sleeping. Which she is doing a lot of these days.She wondered out loud if she’s “seeing” so much because she’s lived and traveled to so many places and if folks who live in the same place all their lives have a different experience…

She is also having lots of “visitors”. After a Reiki session she turned to me and asked, “Are Daniels’s parents passed?” I said, “Yes.” And she said, “They were just here.” She told auntie Cole that same day that Nicole’s father had visited her the  night before, inviting her to sit with him on the porch. That is exactly where Nicole spent many cherished moments with her deceased father.

But in the end, it was her bodhisattva daughter, miss M, child of her mother and grandmother, Jeanne, who provided the ultimate gesture of love…

After decorating practically every surface of her mother’s room with her stupendous art work, then preforming dance after dance on Thanksgiving eve (much to her mom and dad’s delight!), miss M lovingly whispered in her mother’s ear while saying good night, “I’m sorry you have to die, Mamae…”

No tears. Just a rare moment of enlightenment we can all take a lesson from.

Terri wants you to know she is surrounded literally and figuratively by all of you who love her. She feels your love, compassion and strength each and every day.

She wants to thank each and every one of you who helped bring her “home”. And she welcomes your continued prayers, positive energy and support in the days ahead…

Love, auntie L and Team Terri

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Our miraculous Angel Med Flight

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family loving…

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Life and Death

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The latest scan results are in.  The cancer has spread.

In addition to the cancer in my lymph nodes and around my left breast implant, the cancer has also spread to my sternum, ribs, clavicle, pelvis, vertebrae, spine, neck, and into my liver.  Plus, I still have liters of fluid surrounding my left lung.  And it turned out there is a fracture in the left femoral neck ( which explained the hip pain I’d been having for the last three weeks).

I found out this wonderful news in a cab en route from the Chicago airport heading to celebrate my 40th birthday with auntie Cole and 15 of our closest family and friends.  To add insult to injury, as I was getting in the cab I made a wrong move and the fracture in my femur turned into a full break. I arrived at the hotel only to be whisked away in an ambulance moments later to Northwestern Hospital to prepare for emergency hip surgery.

Happy birthday to me!

That was Friday, October 24. I’ve been in Chicago ever since.

Fortunately, I didn’t have to do surgery on my actual birthday. Instead, all the girls came to my hospital room with presents, champagne, cupcakes, good tunes, and smiling faces and we managed to celebrate.

The next day I went in for surgery and all seemed well. I had minimal swelling, minimal bruising. Everyone seemed happy with my progress. The pain was excruciating the first few days but that’s what pain meds are for right?  Eventually they transferred me to their acute rehab center and I started to learn to walk again.

Unfortunately more drama lay ahead.

One night I awoke in excruciating pain, finding it difficult to breathe. When the pain didn’t go away they sent me back to the emergency room at Northwestern Hospital to figure out what was going on. Turns out my gallbladder was inflamed and infected.  Fearing my body wouldn’t be able to handle another surgery, the doctors installed a drain directly into my gallbladder instead.  And started me on antibiotics.

For days I was unable to eat. I felt so weak. We did more scans which further confirmed the presence of cancer in my liver, around my gallbladder, and intestines. It felt like the end. I could no longer gloss over how sick I truly was.  All of a sudden death didn’t feel so far away.

Thank God auntie Cole and auntie Laurie were here - to hold my hand, to listen to the doctors, to make plans,to distract me with episodes of sex and the city, to cry endless tears with me.

Thank God for my husband and my neighbors and my family who kept miss M’s life as normal as possible during this time.

Fortunately hubby and miss M managed to make it out here to Chicago for a couple of days. It’s so hard being away from them.  That visit restored all our spirits and gave me the extra oomph I needed to get stronger again.  With each passing day my stomach hurt less and less. I was able to eat more. I was able to get out of bed and walk again. But we all knew for the real healing to occur I needed to get back home to New England.

And the great news is that after days and days of back and forth with doctors, social workers, medical facilities, and  health insurance representatives, it looks like we finally are getting out of Chicago. Hooray!

Because of my condition, it is near impossible to get me home on a regular commercial flight. So my fabulous uncle Markie found a company called Angel Med Flight that will take me and two guests on a direct flight home with an EMT worker and a nurse and everything I might need medically to make it through the journey.

The unfortunate news, is that this flight costs over $14,000. But if my situation truly has become one of life or death I know I don’t want to spend whatever time I have left alone in a Chicago hospital. I need to be home with my family. Whatever the cost.

But if anyone out there would like to contribute towards the payment of this flight it would be greatly appreciated.  You can always donate through the PayPal link on the sidebar of this blog or contact my aunt Laurie ( l.oneil@comcast.net) to make other arrangements.

As it stands right now, I am set to leave on a jet plane tomorrow morning. They will transport me directly from the hospital via ambulance to the airplane. And then from the airport in Connecticut to a rehab facility in Mystic where I will stay until we figure out what’s next.

Ultimately, I would love to go back home again. To be in my house. With my daughter. My husband.  My dog. My DVR TV shows…  But I know I need to build up to that. Right now my body is still weak. My breathing is labored.  My tummy and gallbladder are still sensitive.  And my hip still needs a lot more healing too.

I will continue to take each day as it comes. To cry when I need to cry. To laugh as much as I possibly can. To spend time with those I love. To try not to get lost in the sadness and despair. To remember there is always hope.

My life is not over yet. But for a moment it sure felt like it was.

Love to all.  -T

dogdr m

First haircut post chemo - with the hilariously spicy Heidi French!

First haircut post chemo – with the hilariously spicy Heidi French!

Children's Museum Chicago

Children’s Museum Chicago

Enjoying The Passage Of Time

Me, Miss M, and Melinda the unicorn eating at Dojo's on a recent trip to NYC

Me, Miss M, and Melinda the unicorn eating at Dojo’s on a recent trip to NYC

This morning on NPR radio they were doing a show about vacations. Specifically about America’s reluctance to take vacations compared to Europe’s support and encouragement of vacation time.  What struck me most were the stories from people who called in…  The man who worked hard for decades so he could retire early only to become disabled and unable to do the traveling he once dreamed of… Or the woman who spoke of her parents postponing travel till retirement and then passing away on their first ever flight out of the country…  The message seemed to be – enjoy life now while you can because who knows what tomorrow will bring.

This message hit particularly hard because of the passing of three fellow cancer warriors in the last few weeks…  All way too young.  All with so much life left to live.  Giuseppa Pontearso Robinson, Michelle Pammenter Young, and Thomas Hadt you will never be forgotten.

The beauty is, that all three of these people understood the message about enjoying life while you can. They traveled, they loved, they laughed, and made sure to have one heck of a good time.

I realize more and more that that is what it’s all about. Don’t wait. Have your good times now. Take that vacation. Travel. Do what makes you happy.

Oftentimes friends say to me, “I had no idea things were that bad.  Or that you are struggling so much.”  This is because I try not to focus on all the things that are wrong with me… Like the two litres of fluid sitting in my left lung that makes it hard to walk without being out of breath… Like the constant back pain from the tumors in my spine that make it hard to stand for any length of time… Like the fact that only one of my hands works… That the side effects of the drugs I am taking make me nauseous and tired, have me running to the bathroom to throw up, making my skin dry out and scab up, my fingers full of sores, my eyes constantly tearing so it’s hard to see (not to mention what the drugs are doing to my liver and all the good cells)…

But I don’t want to focus on all the bad stuff.  Because my hair IS finally growing back in. My pain is much more manageable than it was two months ago. I can still walk. I can still take a vacation and travel. I have many people that love me and many prayers being said on my behalf. And as long as I’m still able to get out there and live life, that is what I plan to do. I’d rather spend my time doing that then bitching and moaning.

So I’m planning a trip to Vancouver and Bowen Island for Canadian Thanksgiving. And a fun girls trip to Chicago to celebrate my 40th birthday in October with Auntie ‘Cole. And a trip to Hawaii to visit friends in the new year. The cancer will just have to take a backseat because I have things to do, people to see, and places to go!  I’ve also finally started to write the memoir of my mom’s and my journeys through cancer.  It’s been a long time coming.  It feels good to finally get it out of my head and onto the computer screen.

As James Taylor said, “The secret to life is enjoying the passage of time.”  If you’ve never heard this song take a moment and listen. Words to live by.

Peace and love.  -T

PS - I want to take a moment to say how much I truly appreciate all of you who take the time to read my musings and provide heartfelt comments on the blog. I always intend to respond and then life gets in the way. But I really want to make it a point to find the time to engage more with all of you who are reading.  This blogging community means a lot to me. You guys mean a lot to me.  I’m going to try and make it happen.

Family apple picking adventure!

Family apple picking adventure!

photo 3

 

Happy Days Are Here Again

Hubby and I at the Blowout

Hubby and I at the Blowout

Living with a terminal illness ain’t easy.

My health really took a nosedive the last few months…

My energy was zapped. My mobility was compromised. The pain was never ending.  My arm was completely swollen and non-functioning.  I spent hours sitting in my living room staring out the window and feeling sorry for myself. Wishing I had the ability to take a long walk, or play with my daughter, or make a meal, or do anything except feel like crap.

I really wanted to be that person that could heal themselves without pharmaceuticals.  But I realize now that a rigid attachment to alternative and holistic healing and disdain for Western medicine is not the answer.  Keeping an open mind at all times is key.  It is yet another reminder of how unique each person’s journey is with cancer. It’s not fair to compare. And I am realizing what works best for me is a combination of Eastern AND Western approaches.  It is what put me into remission the first time. And I am praying that the combination will get things under control again this time.

I’ve been on the new chemo regime (Xeloda and Tykerb) for almost a month now. So far so good. I can feel some of the tumors actually shrinking… My tumor marker number is going back down… I’ve been able to slow down on the pain meds… And I swear my energy level is back on the rise again… Or maybe that’s just my spirit being restored…

Because it seems every time I’m feeling beat down. Ready to give up. Tired of fighting the fight. The universe intervenes and bring something or someone my way to turn it around.

This time my spirit was restored in so many ways by so many people. Including all of you…  All the comments, suggestions, pep talks, good energy, and prayers bring me such comfort and pull me out of the bad place that my mind often takes me to.

Plus, I truly have the most AMAZING group of family and friends.

Auntie ‘Cole spent much of the last month out here in Connecticut… Taking care of me and my family… Driving me to appointments… Loving me through tears, fears, and frustrations… Lifting my spirits… And helping me laugh again.

My Massachusetts family continues to rally around me and offer endless amounts of love, support, and help with Miss M.

Plus I have fabulous neighbors who invite us over for meals, bring us fresh veggies from their garden, and offer to take Miss M off my hands when I need a break.

And my in-laws who spent the entire summer here – cooking delicious meals, doing laundry, fixing up the house, passing out plenty of hugs, and watching Marisa when I had to go to appointments.  I can’t believe it’s almost time for them to go. In one more week they will be on a plane, on their way back to Brazil. I’m getting sad just thinking about it.

But I think what really gave me the extra boost I needed to start fighting again was being the recipient of the blowout fundraiser in Dartmouth Massachusetts a few weekends ago. And it wasn’t even about the money that was raised (even though it was VERY much needed and appreciated)…  The boost came from all the people that were there. The loving energy. The fun times that were had by all. The music. The laughter. The chance to engage with hundreds of fabulous people.  To catch up with old friends and make new ones.   Being a part of that was extraordinary.  And I left that weekend feeling energized. Feeling my inner warrior come alive again. Feeling blessed. And full of gratitude.

So a big THANK YOU to everyone that made the blowout a reality – the organizers, the volunteers, the musicians, the cooks and servers, the facepainting team, everyone who donated to the auction, who bought tickets, all those who came out to celebrate the day with me, and of course all the family and friends who nominated me and made this year’s blowout one of the best ever!  Next year I plan to return as a volunteer.

And this is how it goes… Every time I’m at my lowest, exhausted, and ready to give up the universe finds a way to lift me back up again. To show me the joy in living. And give me the strength I need to continue this journey.

Beyond anything else that I am doing, I know it is this love that carries me through and keeps me alive.

Thank you everyone!  Happy days are here again!

Three generations of love!

Three generations of love!

Girls just want to have fun!

Girls just want to have fun! With Auntie ‘Cole, Cousin J, Miss M, & everyone’s favorite puppy – Aura.

Family fun at the Blowout

Family fun at the Blowout

The Tides Are Changing

familyIt’s been another rough couple of weeks…  But i feel myself finally starting to pull out of the blackness and into a better place.A big part of that has to do with the amazing outpouring of love, prayers, blessings, uplifting and encouraging words, and donations that have come my way since the last post.  Thank you everyone!!  Wish I had the energy to respond to each and every one of you!!  And shout-outs also go to the amazing hands on support of my best friend Auntie ‘Cole who continues to be there for me…  And my darling hubby…  My entire family…  And the special love of the O’Neil crew!!

Right after I posted my last blog entry I was hit with a crazy MRSR like infection in my chemo port.  It landed me in the hospital for an entire week.  Thankfully my family whisked Miss M off to Massachusetts and hubby was able to take time off from work to be with me and hold my hand as they brought  me to surgery to remove the infected port.  It’s been just over 2 weeks since I was discharged.  I took 3 weeks of hardcore IV antibiotics am now taking 2 more weeks of oral antibiotics.  I was feeling pretty low.  But I think the worst is over.

Last week I also made the decision to start a new chemo regime – Xeloda & Tykerb. Fortunately they both come in pill form since I no longer have a port for intravenous drugs.  It’s been exactly one week and so far the only side effects i’ve had are nausea and tummy upset.  But I also know the side effects of chemo are cumulative.  The longer these drugs build up and percolate in my body the higher the chances more intense side effects may appear.

We also learned last week that my liver enzymes are elevated so we need to keep an eye on that.  It could be from the onslaught of drugs I just started taking or from the cancer.  Time will tell.

But amidst all the craziness, some incredible news came my way…   It all started a few years back when friends and family in Massachusetts banded together to create The Gracefulwomanwarrior Committee to raise funds for my never ending medical expenses.   They were scheduled to meet again last week.  Now to tell the rest of the story is my fabulous Auntie Laurie…

 

Ideas had been percolating among us about what to do; holding a 5K, raffling an IPad, scheduling a golf tournament. My daughter Jamie suggested I contact the folks who run THE BLOWOUT in Dartmouth, a FABULOUS annual fundraiser that has been making an incredible difference in our community since 1977.  Figuring it was too late, I never reached out.

While Terri was in the hospital, Tom B. who works with my husband at Tomlinson & O’Neil Insurance just happened to mention that THE BLOWOUT didn’t have a recipient this year…  (Coincidence?? I THINK NOT!)  The brothers O’Neil immediately told him about Terri and he put her name forward. I promptly dialed my sister Dori who reminded me she has played THE BLOWOUT for years and she wasted no time contacting her connections!  Before I knew it, my fellow committee member, Peggy B., reached out to her brother Ricky, a BLOWOUT volunteer since its inception. The serendipitous threads of connection continued all week, as news of Terri’s remarkable journey and the thousands upon thousands of folks she has inspired reached the committee.

I received the call from my sister Dori on the eve of our committee meeting.  Terri was chosen to be this year’s recipient!!   I immediately called Terri. Tears flowed down my cheeks as I literally heard the “joy and happiness” my incredible niece is forever searching for, amidst the suffering that suffuses her life…Hearing that light, that life, emanating from her being was a gift I will treasure always.

So, mark you calendars!   Come on down…  Saturday August 9th in Dartmouth, Massachusetts!

For more information on The Blowout go to facebook:  www.facebook.com/dartmouthblowout  …  If you are local and want tickets please email me at l.oneil@comcast.net. For Terri’s NYC and CT friends and family, there are several hotels nearby! Terri and her entourage are beyond excited to share this remarkable day with all of you!  If you are unable to attend but would still like to help please consider donating on the blog to assist the da Silva’s with ongoing medical costs.  

As for our Warrior, she keeps on keeping on, embracing her new “modified” lifestyle like the true New York-ah she is…

Thanks Auntie Laurie!  And thank you to the entire Gracefulwomanwarrior Committee!  And the Blowout team!  I am so grateful!!!

Peace!  Hope to see ya’ll there!

With love, – T

First day home from the hospital

First day home from the hospital

Embracing the new 'modified lifestyle

Embracing the new ‘modified lifestyle