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

Crossroads

photo 1

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

 

 

 

 

Honouring My Hubby

The good ol' days...

The good ol’ days…

Today, on our anniversary, I am sending love to my hubby.

It’s been 11 years since we tied the knot in a two minute ceremony at city hall in NYC.  My parents were the only ones in attendance.   Later that year, we honoured our union again with a spiritual ceremony on the cliffs of San Francisco along with 30 of our closest family and friends.  Now we get to celebrate two anniversaries each year!

Many marriages have crumbled under the pressures we faced in the last 11 years…   Depression, death, moves, homelessness, cancer…  But somehow we survived.  There were many times when we could have said, “Screw this!  This is too much.  I’m outta here.”  But we never did.

In the day-to-day struggles I often forget to tell my husband how much I love him.  How grateful I am for his support.  How I treasure our bond.  How I appreciate all the little (and big) things he does for this family.

I know it’s not easy being the sole breadwinner.  Feeling the weight of our endless medical bills.  Credit card debt that never seems to go away.  Always struggling to make ends meet.  Knowing your family is depending on you to stay afloat.

I know it’s not easy being married to someone whose sex drive is not what it used to be.  Having a wife whose energy is depleted by the time you get home from work.  You must wonder if things will ever get back to “normal” again.  If the confident, sensual woman you married will ever reappear.

I know it’s hard picking up the slack.  Taking on many of the things your wife used to do – before she had cancer.  The cleaning…  The laundry…  The cooking…  On top of everything else you do.   I know it gets exhausting.

I know it’s scary to have a wife with a terminal diagnosis.  The fear that circles around in your head.  The uncertainty of our lives.  The anxiety surrounding treatment decisions.  The sadness that enters your heart when you think about the possibility of losing your wife…  Your partner…  The mother of your child.

I know you feel that life is unfair.  I know you’re angry at God.  I know you question why we’ve had to carry the weight of so many challenges.  I wish I had the answers for you.  But I don’t.

I remember what our lives used to be like.  How much fun we had.  How manageable it all seemed.  How frisky and in love we were.  I understand the deep wanting for things to go back to how they used to be.  I get stuck there too.

But somehow we must forge ahead.  Enjoy the good moments when we have them.  Learn to accept and hopefully embrace our new reality.  Build a new life.

After 11 years of marriage I need you to know that I am still madly in love with you.  I still think you’re totally hot.  You make me laugh with your crazy antics and our inside jokes.  You’re a terrific father.   You’ve got a kind and generous spirit.  You’re a hustler.  A survivor.  And I know when the chips are down you’ve got my back.  You always have.  Please know that you are adored, appreciated, and loved.

We’ll make it through this just like we made it through everything else in our crazy lives.

Happy anniversary!  xoxo  - your Luanna

Gleaning Perspective From The Latest Scan Results

me and auraThe latest PET scan results are in.  The news (as far as I’m concerned) is pretty good.

There are spots of cancer around my left chest/neck/shoulder/armpit/sternum area which we already knew were there.  I can feel them through my skin (now that the lymphedema swelling is going down) but they don’t seem to be getting any bigger, which is great.

A few new areas lit up in the bones of my back and shoulder.  But the SUV numbers are on the low end (5-6) and I’m not having any pain.  I’ve had areas on my back light up on prior PET scans and then disappear entirely or not show up on other scans.  So I’m not too concerned about this either.  [Besides, when I was first diagnosed my PET scan SUV ratings were 13-15.  And a rating less than 4 can often be simple inflammation or scar tissue].

The other good news is that the two “suspicious” spots from my recent brain MRI did not show up on the PET scan so it would seem that the brain is clear.  And nothing came up in any of my organs either which is fantastic.

The only slightly weird thing is the appearance of a pleural effusion around my left lung.  A pleural effusion is a build up of fluid in the tissues between the lung and chest cavity.  This fluid could be a bunch of different things.  It could be cancer.  Or not.  It could also be from the blockages in my lymph system that prevents my bodily fluids and blood from going where they need to go.  Or a result of the chemo.  Or from the blood clot I had in my lung.  I’m not having any symptoms or pain.  And my oncologist does not seem overly concerned.  For now, I think we’ll just watch it.

So that’s that.

I don’t put a tremendous amount of weight into my scans.  With all the scans i’ve had over the last two and a half years I’ve learned that they (like the tumor marker numbers) are not fool proof.  Nothing is I guess.  There’s always room for error and false positives and inaccurate readings.  For me, the best gauge of how i’m doing is how I feel.  And these days I’m feeling pretty good.

I also made the decision to stop taking one of the three meds I’m currently on – Taxotere.  It is the only chemo med i’m on.  I will continue to take the other two meds (Herceptin and Perjeta) which are specific treatments for my HER2  positive cancer.  They target my cancer cells specifically and don’t harm my healthy cells (although both drugs can cause heart problems so we need to monitor that with regular echocardiograms).  Some may think it’s a gamble to stop one of my meds but it’s a gamble I feel good about.  Plus, I can always change my mind.

When I asked my oncologist what the usual treatment protocol is for people in my position she explained that most do the drugs until they achieve “maximum response” and then take a rest or try something new.  The reality is that for most stage IV breast cancer patients ‘maximum response’ is just a shrinking or stabilizing of the tumors.  I think it’s only 2-5% who actually get rid of them all together for an extended length of time.  For the rest, it becomes a life-long chronic illness.  Trying one drug until it no longer works and then switching to another.  Always hoping the cancer doesn’t grow or spread further while managing horrible and annoying side effects that may never go away.

And i have to say that living with the side effects of treatment is a pain in the ass.  But it’s interesting how the body adapts.  With the fingers on my left hand barely functioning and the nails on my right hand about to fall off I’m surprised at how the everyday stuff still gets done (albeit with way more effort, frustration, pain, and time).   And you realize how much you take for granted…  Typing…  Buttoning up your pants…  Washing a dish…   Doing your daughter’s hair…

Plus, the sheer exhaustion I feel most of the time drives me crazy!  I want more energy!  More energy to be with hubby and Miss M…  To live life…  Travel…  Be with my favorite people…  Pursue my dreams…  It was great having people here visiting and helping out the last couple weeks.  Now that they’re gone I’m struggling again.  The housework doesn’t get done (not a big deal, I know.  But it’s been 3 days and the dishes in the sink eventually must get done).  Making a meal and cleaning up after takes every ounce of energy I have.  But I plug along…  And eventually the most important stuff gets taken care of somehow or another.  Plus now, at the urging of family and friends I am going to inquire about having a home health aide come in to assist with the household stuff.  And hubby and I are considering asking his parents to come up from Brazil to stay with us for a while too.

And still I count my blessings and always know it could be worse.

I can’t believe how many strong young mothers out there are facing cancer.  Dealing with extreme pain and the loss of life as they know it.  So many young kids watching their moms die.  This shit is no joke.  And it sucks.  And you can’t help but ask, “Why?”  How is the loss of so many vibrant amazing women part of the master plan???

I try to remember what Sylvia Boorstein said…  Life is painful.  Suffering is optional.  And I am determined not to let cancer run my life.  Determined to have the most fun I can while I’m here!

On that front…  I decided to pursue my dream of becoming a dance & movement therapist.  I applied to the summer intensive 3-year program for mental health professionals at the 92nd Street Y in New York City.  I even have a dance audition at the end of the month!  Fingers crossed I get in.   (And yes, my oncologist knows all about it).  I’m thrilled at the idea of being able to help other cancer patients heal and process their feelings through music, dance, and movement.

Some may say I’m crazy for trying to take on so much while in the midst of treatment.  But I say, “Why not?!?”  We all need more fun in life.  More passion.  More stimulation.  Something to look forward to.  Something to live for.  Instead of terminal or chronic illness being the end of everything, why not let it be the beginning?  Why not use the “free pass” to truly live your life?

Life is too short to sit on the sidelines.

I understand that life is painful.  But I refuse the optional suffering.

Peace.  -T

Miss M & Papai's special hand crafted carnival mask!

Miss M & Papai’s special hand crafted carnival mask!

Sunday arts and crafts time

Sunday arts and crafts time

Biopsy News & Finding The Courage To Set Sail

Spring is on its way!  I can feel it in the air.  The birds have returned.  The snow is melting.  The sun is shining.  What a difference it makes in my spirit!  I’m feeling renewed.  Hopeful.  Full of gratitude.

Last week we had an amazing visit with Auntie ‘Cole who showered us with her playful spirit and love.  It always warms my heart to spend time with her.  And hubby, Miss M and I seem to be settling on a church finally.  We’ve gone to the same United community church the last three weeks in a row.  And i’ve actually been thinking about purchasing a Bible and reading it!!!  A previously incomprehensible thing for me.

The latest news on the cancer front is that we received the biopsy results.  And i’m glad I went through with the biopsy because it confirmed my suspicions (and the dream I had) that the cancer is different this time around.

Previously my cancer was “triple positive” meaning it tested positive for estrogen (95%), progesterone (90%), and HER2.  Now, my cancer is still HER2 positive (which is good because two of the three drugs i’ve been taking are targeted HER2 treatments) BUT it is no longer hormone positive.  Meaning, this cancer no longer feeds on excess estrogen or progesterone.  Which to me is amazing!  Especially since I refused all hormone treatment (aka: Tamoxifen) and surgery (aka: an Oophorectomy – removing my ovaries) – Despite continuous pressure from my western medicine doctors who thought I was crazy not to as a young 30-something pre-menopausal woman.  But my gut said not to do it.  And instead, I chose natural methods…  Using targeted supplements like DIM and Calcium D-Glucarate (among others)…  Getting rid of as many xenoestrogen chemicals as possible from my diet and personal care products (choosing organic whenever possible, switching to 100% natural lotions & largely shunning shampoo, deodorant, and sunscreen)…  Plus losing 30 lbs of extra weight (fat cells store and produce estrogen)…   Apparently it worked!

I’m so thankful I listened to my intuition.

This also means I have fewer drugs available to treat my cancer (which according to western medicine is a bad thing).  But for me, I wasn’t going to take those medications anyway so I’m thrilled.

Now I’m faced with more decisions.  And my gut is telling me something I’m not sure I’m ready to hear.

The last few days when I’ve quieted my mind, meditating at the beach I received the message that I don’t have to do chemo.

Of course this goes against conventional wisdom (as well as, what I’m currently doing for treatment).  And I know most people will be horrified that I would even consider stopping chemo (which is why I haven’t told anyone about this till today).  But I know that when my intuition speaks I need to consider what it’s saying.  My gut is telling me I’ll be fine either way.  But the chemo isn’t necessary.  I can do this other ways.

Plus, the Universe keeps sending me similar messages.

I was guided by my husband’s psychic/medium in Europe to read a book by Brandon Bays called “The Journey”.  In it, the author heals herself from a basketball size tumor without conventional treatment and speaks loud & clear about physical dis-ease being a manifestation of unresolved trauma, unexpressed emotion, and disharmony of the spirit and soul.  From the beginning I’ve shared my belief that I think so much of physical disease is tied up in traumas of the spirit, mind, and emotions.  I think this is equally, if not more, important than the drugs you take or the food you eat.  You can exercise every day and eat a totally healthy diet and still get sick.  Isn’t the most important thing to live a life that honors who you are?  Nourishes your spirit?  One that is filled with joy and love?  And heck, even if you do end up dying at least you’ve lived the best, happiest, most authentic life you could live, right?

Then, in the middle of writing this blog I received a call from a new healer I’m working with.  She is a medical intuitive who is trained in a number of healing modalities and came highly recommended.  She primarily uses muscle testing to tap into what the body/mind/spirit needs and wants.  Coincidentally, in the weeks leading up to my session with her I read an article by Martha Beck in an old Oprah magazine that also talked about muscle testing – You can read it here.  And what came up in my session (among a ton of other stuff) was that chemo may not be the answer.

So where does this leave me?

The question I keep asking myself is if I’m strong enough to honour my truth.  To once again, go against the grain.  Against conventional thinking and treatment.  Am I strong enough to shield myself from everyone’s fear and judgement?

I listened to my gut when it came to hormonal treatment and my gut proved right.  Why does this seem more difficult?

I’m scheduled for regular chemo this week plus one more dose of the new drug Perjeta next week.  Then we’ve got a PET scan scheduled for the second week of March to see where we’re at.  I guess my plan is to wait and see the results of the scan, set up some appointments to get a few other opinions and then ultimately make a decision.

As my daily meditation from Simple Abundance said today, “One does not discover new lands without consenting to lose sight of the shore.  [So] set the sails.  Pull anchor.  Cast away…  Or stay on the shore.  But choose.”

It’s so much easier to stay on the shore.  Stay in the comfort zone.  Stay stuck.  But even that is making a choice.

What will I choose?  What will you choose for your life?  Can we find the strength to make the choice that feels best to us?  And not to everyone else?  The choice that honours our truth?  The choice that feels right, no matter how scary it may seem?

I feel like I’m getting on the boat.  Wanting to set sail.  But still afraid to pull the anchor.

Maybe it’s time.

Peace.  - T

Snowflake decorations with Miss M in preparation for Auntie 'Cole's arrival.

Snowflake decorations with Miss M in preparation for Auntie ‘Cole’s arrival.

 

Pizza making party with Auntie 'Cole.

Pizza making party with Auntie ‘Cole.

 

 

 

 

 

Visions With The Long Island Medium and Beyond

Me and Auntie L moments before our amazing experience with the Long Island Medium.

Me and Auntie L moments before our amazing experience with the Long Island Medium.

I really need to start blogging more often.  So much going on.  So much I want to share.  When I wait so long in between posts it takes me forever to condense my thoughts.  I think it’s time to get back to posting more frequently…  Another resolution for 2014!

Well, it seems that after months of struggling to reclaim my faith and inner warrior spirit I’m finally making some progress.  I’m feeling good.  Getting back on track.  Finding joy in life again.  I realize there’s no guarantee I’ll feel this way tomorrow, next week, or next month.  But for now I’m a lot happier than I’ve been in a while.

I’ve been taking steps to rediscover and honour my authentic self.  I realize how choices I made over the past six years didn’t leave me with much space or energy to honour my truth.  I know it’s time now.  I know honouring my truth and just being unapologetically me will help me heal.

So I’m getting back to the things that I love…  Taking ballroom dance lessons with hubby…  Exploring the idea of becoming a dance and movement therapist…  Traveling…  Seeking adventures…  Spending time in nature…   Researching volunteer opportunities…  Baking…  Enjoying good food…  Going to church every Sunday…

Plus I’m doing things that honour my truth and support my well being…  Like ditching my therapist…  Limiting my time and energy to people who are engaging and uplifting…  Cutting out the unnecessary stuff from my life…  Not getting caught up in other people’s dramas…  And asking for help.

I’ve also been receiving messages that I’m on the right track.  My tumor markers dropped.  My energy levels are good.  My pain still hasn’t returned.  The tumors in my neck have shrunk so much that when I went for a biopsy this week the doctor could no longer feel where to biopsy.  My recent vaginal ultrasound (concerns about me getting my period while in treatment) and echocardiogram (concerns about shortness of breath) both came back fine.  And I may finally be ready to get off my blood thinners.  Hallelujah!

Things were further confirmed this past weekend when I went to see the Long Island Medium (Theresa Caputo) live in Providence thanks to the amazing generosity of my Uncle who surprised me and my aunt with tickets for Christmas.  And these weren’t just any tickets…  Our seats were aisle seats mere steps from the stage.  You’re the best Uncle M!  Thank you from the bottom of my heart!

I love Theresa because she is so unapologetically herself…  Big hair…  Crazy nails…  Glittery 4 inch heels…  Wise-cracking sense of humour…  Long Island accent…   Inappropriateness.  She’s just who she is.  Period.

Of course I was praying my mom would come through – But not expecting it in a theater of 3,000 people.  So when Theresa ended up standing in front of us, passing along messages from my dead mother, I was simultaneously shell-shocked and overcome with emotion.  Naturally it was Uncle M’s ancestors that brought Theresa to us.  They were caught in the deadliest nightclub fire in US history at Cocoanut Grove in Boston.  Uncle M and the family have since set up a foundation to honour those who perished in the fire and help pediatric burn victims.  And it was a vision of this fire that sent Theresa to us.

Theresa then acknowledged my mother’s presence and first asked if I was in remission.  When I said no, and told her I was in treatment for stage 4 cancer the audience moaned and gasped.  Theresa then asked if I was doing holisitic treatment.  When I told her yes, she said I need to continue with that…  That she saw tests and numbers confirming that what I’m doing is working…   She said she saw me on the floor, at the feet of the blessed virgin Mary (which I confirmed by telling her about my recent visit to Fatima, Portugal to which the audience let out more audible gasps)…  And she told me my mom was there with me on that day…   And that my mom says it’s not my time to join her yet (which are the words I’ve told my mom since the day I was diagnosed, “Mom, I’m not ready to join you yet!)…  And she also said my mom was sending assurances that I’ll be around for years to come and be able to celebrate the major milestones in my daughter’s life…  She used the word “remission” a few times…  And before she moved on to the next person she wished me luck and gave me a big hug (I was the only person that night who got a hug!)  It was magical.  I left with a renewed sense of hope and faith.  And confirmation that my mother and the angels are truly watching over me.

I will try to carry this hope and faith with me even when the days aren’t so easy…  When my left hand is barely functioning and I can’t clip my nails, type, or fish something from my pocket…   When my skin is cracked, red, and raw from the endless tearing of my eyes and dripping of my nose that is a side effect of the treatment…  When I don’t have the energy to parent the way I want to – letting Miss M watch too much TV or giving in to her whiny demands instead of offering consistency and discipline.  I have to say that this continues to be one of the biggest struggles for me – Parenting through treatment.  Being a full-time mom is a lot of work.  A lot of energy.  I find myself feeling jealous sometimes of those who have the luxury of sleeping all day or lounging on the couch after doing chemo.  Those who don’t have to think about anyone else but themselves and getting through treatment.  But alas, I know they too, have their difficulties.  No one is immune.

That is something I continually realize as I chart my path through cancer…  We all have our battles to face.  Our demons.  Our tragedies and difficult situations to contend with.  Whether it’s cancer, homelessness, bankruptcy, divorce, unemployment, infertility…   At some point we all reach a crossroads in our life.  These challenges shake you to your core.  Humble you.  Jolt you awake.  Then we have the choice to either keep trying to return to what was or to embrace the change and redefine yourself and your reality.  Each of these moments presents us with the opportunity to make our lives even better than they were before.

Why not seek to live a better life?  What have you got to lose?

Love to all.  - T

Miss M cruising the beaches of Luquillo Puerto Rico.

Miss M cruising the beaches of Luquillo Puerto Rico.

Our local beach while in Puerto Rico

Our local beach while in Puerto Rico.

Enjoying some alone time walking through El Yunque rainforest on our last day in Puerto Rico.

Enjoying some alone time walking through El Yunque rainforest on our last day in Puerto Rico.

The view from our balcony on the 18th floor.

The view from our balcony on the 18th floor.