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!

popsicle cheers!

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

day girls

 

 

 

 

 

 

 

 

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!

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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

Crossroads

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Chillin’ in Central Park

Not feeling so good these days. My body has taken a turn for the worse. And I’m not sure which direction to go next.

I am in pain pretty much around-the-clock. My neck. My shoulders. My back. My arm. My hand. An ongoing ache that prevents me from standing  too long, or walking too long, or doing any activity for too long. Instead, I need to sit. Preferably in a comfy chair with back support. And then there’s the shooting pains in my hand from the nerve damage that come and go at random times day and night.

At least we finally have consensus on the cause of my nerve pain. The neurologist said it is likely complex regional pain syndrome. A result of cancer and inflammation pressing on the nerves and blood vessels in the brachial plexus area of my left shoulder. Which means in order for it to get better I need to reduce the cancer (like I haven’t been trying to do that for the last 3 years!!).

In the meantime, I found an amazing physical therapist who is helping me keep the muscles moving and reminding my hand of what it is capable of doing. For the nerve pain I was given Cymbalta and for the other pains I was given Tramadol.  Unfortunately, I just read that these two drugs taken together can cause severe reactions including seizures. So I stopped the Cymbalta (which was making me drowsy 24/7 and decreasing my appetite – neither side effect something I need right now).  Plus, I’ve noticed that high doses of vitamin B seem to relieve even my most severe nerve pains – without side effects.

In terms of treatment decisions, I need to figure out my next steps quickly.  Because the cancer is HER2 positive it is really aggressive.  I can feel new tumors growing every week.  I have one remaining approved drug combination that I can take: Tykerb (a HER2 targeted drug similar to Herceptin and Pertuzamaub) along with the chemo drug Capecitabine (otherwise known as Xeloda).  Capecitabine was the one chemo drug my mom tried.  It likely contributed to her kidney failure – which was the beginning of the end for her.  I’m on the fence about taking these drugs but am realizing my options are quickly dwindling.

Otherwise, I continue to explore alternative treatments including high dose vitamin C infusions, hyperbaric oxygen chambers, cannabis oil, cancer vaccines, immunotherapy, and clinical trials among others.  And I continue to do acupuncture, reflexology, energy healing, and lymphatic massage to ease my symptoms.  To add insult to injury Hubby and I are spending upwards of $1000 each week on medical treatment.  And that’s with a good insurance plan.  Being sick is expensive!!!

Mentally I’m a bit of a hot mess.  Being in constant debilitating pain sucks.  Not being able to do what I used to be able to do is depressing.  Having only one functioning hand makes my every-day tasks frustrating and draining.  I spend a lot of time crying.  Sad that I can’t be the mom I want to be.  That I can’t live the life I want to live.  That my days are spent going from one medical appointment to another.  Trying not to focus on the pain and limitations.  Trying not to obsess over the fact that I may be dying.  Trying to accept that this is my life.  Clinging to the hope contained in messages from the Long Island Medium and other medical intuitives that tell me it is not my time yet.  Praying for divine intervention.  Praying for a miracle.

But I have to say that amidst all the pain and sadness I still manage to have some moments of joy and laughter and peace.  Last week my BFF Auntie ‘Cole came to town and we had 2 glorious days in NYC with my cousin J – shopping, people watching, laughing hysterically…  Followed by more quality girl time in Connecticut with my aunties and their girlfriends…  Hubby and I made it out to see a movie…  And the whole family made it to church last Sunday.

In the end, I know this is what matters most.  Finding moments of joy and happiness amongst the suffering.  It is possible.  But some days are easier than others.  So please send some prayers and positive energy my way.  I need it.  I’m at a crossroads.

Peace and love to all.  -T

 

Fun with my aunties

Fun with my aunties

Me and Auntie 'Cole

Me and Auntie ‘Cole

Me and Cousin J enjoying some of the family's home brew

Me and Cousin J enjoying some of the family’s home brew

Keep On Keepin’ On

Miss M and I at Madison Square Park on a recent trip to NYC

Miss M and I at Madison Square Park on a recent trip to NYC

I’m back!  (And my hair’s coming back too!)

But I ain’t gonna sugar-coat it…  I’m not feeling too good these days.

They just found another blood clot in my arm. Enough already!  So back on the blood thinners I go. Sigh… My arm has progressively been getting worse and worse. Moving it around is increasingly difficult. My fingers don’t move at all now.  And living day-to-day with only one functioning hand is taking a while to get used to. All the little things are so difficult now.… Tying my shoes… Peeling a carrot… Opening mail… Fastening buttons and zipping zippers… Cutting Miss M’s morning pancake… Sigh…

I think what’s even worse, is the pain. The pain in my fingers. In my hand. In my neck. In my shoulder. In my back.  The pain is there pretty much around-the-clock these days. And it sucks.

And while I do have more energy now that I’ve stopped chemo, it’s still not what it used to be. Just going through the regular activities of a normal day exhausts me.

It’s difficult adjusting to the limitations of my new reality.

The same new reality that forced me to withdraw from the dance therapy training program I was supposed to be  doing right now in New York.  Another sigh…  I realized I just didn’t have the strength, the stamina, or the mobility to get through the intensive program.  Initially I was pissed. And sad. But it is what it is.  I accept it.

And life goes on. And it’s not ALL bad.

I finally got some awesome voice recognition software for my computer. Yay Dragon!  So now I can just talk into the computer and it types everything out for me. It’s not perfect. But it sure is easier than typing it all with one hand.  And at least I still have one good hand!  Thank God for that.

Last weekend I got to celebrate the beautiful marriage of my darling cousin to an amazingly kind and talented man…  Miss. M was the flower girl. I was a bridesmaid. The whole event from beginning to end was joyous and full of love. Hubby and I had more fun than we’ve had in a long time… Meeting interesting people… Getting tipsy…  And getting our swerve on on the dance floor – just like old times.  And I rocked it in heels the whole night!

A few  weeks before that Miss M and I spent an amazing week in Ohio visiting our old friends and nourishing our souls.  Miss you guys!!!

Then we celebrated Miss M’s 5th birthday with a fun home-style Brazilian BBQ.  Complete with my fabulous in-laws who arrived from Brazil the morning of Miss M’s birthday.  It’s so wonderful having their help, love, and support for the summer.

And now that summer has arrived, my spirits are boosted by all the lush green trees, beautiful songbirds, beach days, and relaxing hours in the hammock with Miss M (that is, when I’m not at medical appointments, which unfortunately takes up a large chunk of my time. But that’s a whole other issue).

In terms of treatment, I’m on a break from chemo and pharmaceuticals right now. But I’m doing some new alternative treatments. I started high dose intravenous vitamin C last week. They pump it straight into my port. Where the chemo goes. But this is much easier. And I actually feel better after, instead of worse.  The vitamin C oxygenates my body, boosts my immune system, and kills cancer cells. Plus, I started eating apricot seed kernals which are known to be potent anticancer agents and I keep adding more plant-based cancer fighting elements to my daily routine.  I wanted to do hyperbaric oxygen treatment as well. But the cost was absolutely crazy… Over $200 a session. And they wanted you to do upwards of five sessions a week. Are you kidding me?!!??

If anyone is interested in learning more about natural and alternative ways to prevent or treat breast cancer there is an amazing book by Dr. Veronique Desaulniers that just came out called, “Heal Breast Cancer Naturally”.

In addition to all this, I’m talking to various research hospitals in the northeast about enrolling in clinical trials for a cancer vaccine. I wanted to try a cancer vaccine when I was first diagnosed. But they told me because it was still experimental that I had to exhaust standard treatment first. So now I’m finally free to try it.  Yay!  I think I found a good one in Philadelphia at the University of Pennsylvania.  It’s a Multi-peptide Vaccine With Basilixumab.  We are currently going through my medical history to make sure that I am eligible.  If I get in I will be required to make weekly trips to Philadelphia for a while.  So if anyone out there has connections in Philadelphia that could help with an occasional place to stay, please let me know.  And if anyone has any Amtrak train miles they want to donate that would be great too.

In the meantime, I just keep on keeping on. What else is there to do?

I try not to dwell on how crappy I feel. Some days are easier than others. And I notice how much better I feel when I’m having fun… When I have something to look forward to… When I’m spending time with people I love… So I know I need to do more of that.

Don’t we all?

Peace.  -T

Miss M visitiing her favorite teacher in Ohio

Miss M visiting her favorite teacher in Ohio

Miss M's old school in Ohio.

Miss M’s old school in Ohio.

My Brazilian family enjoying QT in the hammock on Father's Day

My Brazilian family enjoying QT in the hammock on Father’s Day

Questioning It All

beachIt’s been a while.  I know.

I’ve been feeling a bit lost.  Out of sorts.  Unclear about life, relationships, cancer, treatment, my career…

Sometimes it’s hard to still find the joy in life.  To have gratitude.  To not stay permanently stuck in a bad place.  It’s hard adjusting to a life with ongoing physical pains, depleted energy, a bald head, non-existent sex drive, and a left arm that is temporarily out-of-order.

But then last week, as i’m sitting outside struggling to make peace with it all and asking the Universe for guidance the doorbell rings and it’s a special delivery from a special friend and fellow breast cancer survivor in NY.  She sent me a gift card for the Metropolitan Opera because she saw “attending the opera” on my bucket list.  And in that moment, just when I’m feeling at my whit’s end, hopeless and losing faith, the Universe sends me this glorious message.  To inspire me.  To remind me of the beauty in living and the amazing compassion of others.  To offer hope and healing.  And show me that God’s love is all around.

It’s not all bad.

I also received news a few weeks ago that i was accepted into the dance and movement therapy program in NYC!!!  I am thrilled!  The news inspired me to start exercising again for the first time since November.  Gotta start working to build my stamina and get back in shape.  I’m easing my way into it and feeling the changes already.

The one problem now though, is that my left arm and hand are really messed up.  Neuropathy has set in (likely a side effect of the darling chemo – Taxotere – which I did stop taking over a month ago, Thank God!).  But my hand and arm are so bad now that I have to type with one hand (hence, the lack of blog posts lately)…  I even had to get Miss M to help me open a can yesterday, and button my sweater…  I can’t put jewelry on by myself…  I can barely tie my shoes…  And I’m having pain at night that runs up & down my left side…  Sigh…

And I’m kinda pissed that my oncoligist didn’t catch this sooner.  It has gradually been getting worse for months now.   We finally did an MRI last week to explore the possibility that this is from some cancer pressing down on the nerves.  Although the scan did show tumor involvement in the bone at the bottom of my neck/top of the spine, there are no solid tumors pressing on my nerve.  So I, along with the other medical professionals I’ve talked to, feel that the neuropathy is from the chemo.  From what I’ve read, this will eventually go away.  But it could take anywhere from a few months to a few years for that to happen.  In the meantime, I am addressing the issue with regular physical therapy, acupuncture, refloxology, energy work, supplements, and plans to meet with an occupational therapist and an osteopath.

My body feels so depleted and beaten up.  I feel like I need to ramp up the love, nurturing, and nourishment.  Cradle my body and treat it like gold.  Be vigilant about my self-care.  De-stress, have fun, exercise, eat right, get quiet, and take it easy.  Take each day as it comes.  Listen to my body and try to figure out what I’m capable of doing.  I’m praying i’ll be physically well enough come June to be able to do the dance therapy program.  I really want this.  And I’ll be so pissed if cancer takes it away from me.

Thank God my in-laws are coming up from Brazil soon to help out!  They arrive on Miss M’s birthday at the end of May and are staying  for 3 months.  They’ll be watching her when I go to NY for my dance therapy program in June.   They are so sweet, helpful, considerate, and fun to be around.  I’d have them permanently move in with us if they could.  And I’m psyched that Miss M will be forced to brush up on her Portuguese!

This past weekend I went with a friend to my first ever breast cancer conference.  LBBC’s annual conference for women living with metastatic breast cancer.  It was pretty fantastic.  To be in a group of people that can totally relate to my life.  Where I don’t have to explain my bald head or why I can’t do a high-five anymore.  I learned more about with treatment side effects (like neuropathy), how to better communicate with those around me about what i’m going through, and why tumor marker tests are not totally reliable, among other things.

I also realized how differently each of us faces and thinks about our diagnosis, our treatment decisions, and our futures.  And how we can all choose different ways of doing things and end up in the same place.  Cancer is such an individual journey.  This is something I must remember as I continue on my path.  My plan doesn’t have to work for anyone else.  It just has to work for me.

Peace.  - T