Bright and early tomorrow morning Miss M and I are off to New York City for travel adventure # 3 of our “Summer Love” tour.  I have been daydreaming about being back home in NYC for the last week.  Already got my plans figured out for our first day…  Arrive at 9am, then straight to my cousin’s place in Astoria…  Drop off the bags and head to Washington Square Park…   Then some cheap vegan food at DoJo’s in the Village…  Hopefully an afternoon excursion to Central Park with my homegirl Liz.  I’m so freakin’ excited!!!

Of course the last few days have been a whirlwind of insanity.  Lots of stuff going on.  But I just keep doing my best to take life as it comes – One thing at a time.  Because if I allow myself to think about everything I have to do and everything that is scary or stressful all at once it’s too much.  The panic starts creeping in.  So instead, I take it one task at a time.  And so far this new strategy of living minute to minute, hour by hour, day by day, is really working for me.

I continue to seek ways to drop the parts of myself and my life that aren’t working and keep focusing on the present moment and what is working for me.  Every day I strive to make conscious choices.  To speak my mind and not hold things inside.  To make healthy decisions.  To keep putting love out into the world as I continue to receive it.

Today is the second anniversary of my mom’s passing.  It’s a weird day.  You don’t really want to “celebrate” per se.  But the day cannot go unrecognized.  All day long she has been with me.  In my thoughts.  In my prayers.  In my meditation session.  In the James Taylor music that came on the radio.  I know she is helping me on this journey.  But I still wish she were here in person, alive, to hold me and cheer me through it all.  She was always my biggest cheerleader.  I miss you mom!

Here’s to my mom…  To the Big Apple…  And to taking life as it comes.

Peace.  – T

The other night my best friend commented that she sometimes forgets I even have late stage breast cancer.  It’s true, life goes on.  Sometimes it’s even possible for me to forget I have cancer.  Especially now that I’m not doing chemo and this über healthy lifestyle I’m trying to live has got me feeling even better than I did before I had cancer.  I’m not 100%.  But I have energy.  I’m not in pain.  My body is back at a healthy weight.  And everyone keeps telling me I look great.

But the little reminders are always there.  My bald head.  My fucked up fingers that make every day tasks like writing a difficult venture.  The port that is still lodged into my chest.

Even though I have my moments of freedom, I can’t get away from the thought of having cancer for too long.

My life is still full of medical appointments, procedures, research, medications, and treatment.  It will be that way for the rest of my life.  I still have to go to the “chemo room” at my oncologist’s office and sit for hours to get my dose of Herceptin.  I’m still taking that damn Tamoxifen (that I would really rather not be taking) and worrying about side effects.

I also have big decisions to make about whether or not to pursue surgery.  Standard treatment for stage 4 breast cancer does not usually involve surgery.  But now that the cancer is contained in my breast, my doctor at Memorial Sloan Kettering in NY is suggesting surgery.  So do I get the mastectomy?  Should I take out my ovaries too since my cancer is estrogen positive?  What about a full-on hysterectomy?  The damn Tamoxifen may cause uterine cancer so why not get the uterus removed while they’re in there as a precautionary measure too?   But if I have no breasts, no uterus, no ovaries, no more female parts – what does that make me?  What the hell would that feel like??  Can my body handle all that?

I say all this the day after one of the most amazing benefits ever.  Thank you Bowen Island!!  As you can see, I still have a long road ahead of me.  And I can use all the help I can get.

The Bowen Island benefit last night was full of so much genuine compassion and positivity.  I am still trying to absorb the pure awesomeness of it all.  The tremendous amount of love and support and good vibes that Bowen Island continues to shower on my family is pure gold.  It restores my faith in humanity.

I have to give special shout-outs to some really cool cats who went above and beyond to pull the event together…

Caroline Goodson-Parker:  The lady with the plan.  The lady who ate, slept, and breathed this benefit for the last 4 months.  My dear, dear friend.  A beautiful soul.

Katherine Wolters & Samantha Knowles:  The queens of the silent auction and organizers extraordinaire (who also ate, slept, and breathed this benefit for the last 4 months).

Auntie Nicole:  My forever best friend and social butterfly who is always there to lend a hand and get the party started.

Isabel Ruediger and her hubby Neil who made sure the booze kept on coming.

Lisa Marie Bhattacharya Whitaker,  nutritionist and chef, who helped provide food to even out the effects of the alcohol.

Tim Hausch:  President of the Legion, Shaw Cable wizard, and as my dad said it, “master of space & time.”  Without his wizardry and the brilliance of good ol’ Skype I would not have been able to join in on the action.

All the talented musicians who lent their beautiful voices, skilled instrumentals, and amazing melodies to entertain everyone for hours and hours on end.

Of course I can’t forget my dad – Spider Robinson – who helped bring all these wonderful people together and continues to support me from afar on this crazy journey of mine.

And all the fabulous folks who donated auction items.  We had some serious goodies to offer up thanks to you guys (including a signed mahogany Martin model guitar from David Crosby).

And everyone else who pitched in to make this event the success that it was – Wendy, Penny, Tanya, Vera…   The entire Bowen community…  All the people that bought tickets…  Donated money…  And sent well wishes and positive energy…  The list goes on and on.  Like I said, I’m still trying to take it all in.

Having the support and love of so many people really does help me feel like I can triumph over cancer.  It makes it easier to face the day.  Easier to heal.  Gives me strength to continue fighting and to live out the essence of my name – Luanna – graceful woman warrior.

Thank you all.  With your help I can do this.

Peace.  – T

Ages ago my cousin Jamie told me I had to read the book The Hunger Games.  After hearing the premise of the story I thought, “Oh – how barbaric and depressing!  There’s no way I’m reading that.”  Flash-forward to a few weeks ago when my favorite neighbor and good friend Sam tossed the book my way and encouraged me to read it.  It sat on my shelf for a while.  But then I finally picked it up.  And let me tell ya, I could not put that book down.  While it was just as disturbing as I thought it would be, I still got hooked and devoured the whole thing in a few days.

Then I started thinking about the parallels between my life and the kids in the hunger games.  How I’ve been thrown into the arena with cancer and am now in a constant battle for my life.  I too must stay strong and healthy…  Mentally and spiritually fit…  Train hard to stay one step ahead…  Gather as much information as possible…  Develop strategies to outsmart my enemy.  Cancer is devious and cunning and stands poised to attack at any time.  I need to constantly be on alert.  Ready.  If I give cancer any opportunity to take over my body and my life it will.

One thing I know for sure, is that my strategy does not involve sitting back and waiting to see what the cancer will do.  When your life is on the line you must be proactive.  So I am doing everything I possibly can to beat this beast down and keep it down.  From going vegan, to cutting out sugar, to exercising every day, switching my under-wire bras to soft cup ones, taking vitamins & supplements, trying alternative treatments, ditching my antiperspirant…  I don’t care if it’s been proven or not – if there is a chance it can help me, I am willing to consider it.  Why the fuck not?

And what I don’t understand is why some folks with life threatening illnesses do not make these changes.  Why not do whatever it takes to keep living?  Why not question your doctors?  Why not research all possible solutions?  Why not get a second, third, and even fourth opinion?  Why not change your diet?  Why not consider doing things a little differently?

I want to live.  Oddly enough, I’ve noticed that I’m feeling happier than I have in years now despite having stage 4 cancer.

I have a new-found hunger for life.  And i am willing to do whatever it takes to stay in the game.

Peace.  – T

One of my core strategies is juicing. Miss M LOVES to help her mamma make juice (but she never wants to drink it!)

Another key strategy… Spend lots of time with those you love and try to get out in nature as often as possible!

Great news arrived today!!!  The results are in from my genetic screening and I DO NOT have the BRAC1 or BRAC2 gene mutation!  WooHoo!!  One less thing for me to worry about.  And it’s great news for both me and Miss M.

It decreases the risk that Miss M will develop breast, ovarian and other types of cancer.  Apparently a woman who inherits the BRCA1 or BRCA2 genes is about five times more likely to develop breast cancer than a woman who does not have such a mutation.  Many women who test positive for the gene even chose to get their breasts removed when they do not have breast cancer as a preventative and cautionary measure.  I’m so glad Miss M won’t have to face those same decisions.

But regardless, Miss M still has to face the possibility that she may develop cancer.  Everyone has to face that possibility.

And I stand by my beliefs that cancer risk is not just about genes.  It’s about harmful chemicals that we ingest on an every day basis…  It’s about the unhealthy, overly processed, and nutrient void diets that most people consume…  It’s about the toxic levels of stress in our society…  It’s about unforeseen tragedies that inhibit our ability to stay healthy…   No one is immune.

I can only do my best to reduce the odds for Miss M.  I can make sure she eats a healthy diet (to this day she has never eaten a meal at a fast food restaurant!  I’m holding out as long as I possibly can).  I can encourage her to be active.  I can help her develop healthy coping skills to combat stress.  I can inform her about her risks.  As she gets older she will make her own decisions.  But for now, I can help lay the foundation of a healthy life for her.

I still think about how all of this will impact her in the years to come.  What is it like to grow up knowing your parent is sick and may die at any time???  That’s some pretty heavy shit.

Even now at age 2 (almost 3) she says and does things that are not the “norm” for kids her age…  She asks to help sort my vitamins & supplements each week into my days-of-the-week pill box.  She assumes every appointment I go to is to visit a doctor (which I guess isn’t too far from the truth).  She always has to be conscious of my “boo-boos” -  No band-aids on my fingernails because it might pull the nail off, no grabbing my neck because she might mess up the line from my port, or resting her head on certain parts of my chest because it hurts…

The other day she told me her Minnie Mouse doll was exercising.  When I asked if Minnie got all sweaty like I do, she replied, “No, Minnie doesn’t have hot flashes!”  I burst out laughing.

I guess this is just how life is for a kid whose parent has cancer (or any other disease for that matter).  And for the most part she and I continue to live our lives and have fun together despite the fact that the cancer is always there.

I never thought I wanted to be a stay-at-home-mom, but now I cannot imagine going back to work before she starts school and missing out on all these precious moments with her.  I often think about how I had just accepted a job offer in November – the week before I was diagnosed…  My fingerprints were scheduled mere hours after my mammogram (that I was CONVINCED was going to be fine).  And then the doctors told me it might not be the best idea to start a brand new full-time job right about now.  So I didn’t.

So in essence, cancer (both my mom’s and my own) has enabled me to stay at home with Miss M and given me the gift of being intimately involved in the early years of her life.  How amazing.  It’s funny how I see all these gifts around me now that I didn’t see before.

Take a look around and find the gifts.  They may be hard to find, but they are there.

Peace.  -T

I’ve said it before, and I’ll say it again…  I am amazed at the love and generosity that continues to pour my way.  And I am SO full of gratitude.

Two weeks from now there will be another benefit for me.  This time on Bowen Island.  Check out the poster (the one that says “ass”- don’t you love it??) and the facebook page.  It will be at the Royal Canadian Legion on Saturday May 26th at 7pm.

It’s a chance for folks to get together, have fun, listen to great music, have a drink or two (or three!), show their support for me and my dad, and hopefully dance (cuz that’s how my mom would have wanted it).  It looks like it will be a truly awesome event.  I have to give a big shout-out to Caroline Goodson-Parker who is spearheading the whole thing.  She was the first mommy friend I made on Bowen.  And she is a tour-de-force!

Bowen Island is a special place.  Rumour has it that the Island has healing properties.  I believe it.  When hubby and I moved there at the end of 2009 we had no idea what to expect.  We weren’t sure if we were coming on a temporary excursion or sticking around for the long haul.  But coming from New York City we knew it was gonna be a shock to our systems.

What we found there was a genuine community.  A bunch of really friendly people who look out for one another.  A sense of pride.  Untouched rainforest and beaches everywhere.  Hubby and I even had a ocean view from our deck.  It was glorious!  My parents knew that Bowen was special.  That’s why they moved there.  And I couldn’t think of a better place for them to have settled down.

When my mom was diagnosed with biliary cancer in 2009 the entire island came out to support us.  An amazing benefit was orchestrated.  Special healthy cancer fighting meals were prepared and delivered – constantly.  Helpful books were dropped off.  Support was offered in every which way imaginable.  And now to see the island coming out yet again to rally behind my family is unbelievable.  The love and support just never ends.

So THANK YOU Bowen Island!!  Thank you to Caroline, Kathrine, Sam, and my dad (and everyone else involved) for putting this fabulous evening together…  Thank you David Crosby and Graham Nash for your incredible donations…  Thank you to everyone who donated items for the silent auction…  Thank you Auntie Nicole for spreading the word on the mainland…  Thank you to all the musicians and bands who agreed to perform…  Thank you to the good ol’ Royal Canadian Legion for hosting us…  Thank you to everyone who bought tickets…

Sometimes I feel like a broken record of thanks.  But I want everyone to know how much I appreciate what you do for me.  How all of your encouraging words, helpful tips, financial help, care and concern really helps to keep me afloat.  It helps me believe in the inherent goodness of the world.  To remember that genuine communities (like Bowen and my new hometown in Ohio) still do exist.  Fills me with hope and gives me the strength I need to fight for my life.  Together we can do it!

Peace.  – T

The View From Our Deck on Bowen Island

Miss M Admires The Local Talent In Nashville

Riverboat Ridin’ at Opryland Resort

Back home today from trip # 2 on our Summer Tour of Gratitude and Giving Thanks.  We had an absolute blast in Nashville.

In the 4 short days I was there we squeezed in a bunch of Nashville attractions.  We went to the Adventure Science Center, Centennial Park, and the fabulous Opryland Hotel & Resort (which, If you haven’t been to already – you must go.  It is simply gorgeous…  an indoor oasis with rambling walkways, lush green vegetation, a river, boat rides, fountain shows, waterfalls, restaurants…  and of course the hotel.  Magical!)

And yes, we made it to church on Sunday – as requested.  And that too, was magical.  Within the first 5 minutes the tears were flowing…   With the soulful gospel music and all the love in the room I just couldn’t stop myself.  And then I thought, “Why even try to stop myself?  Just let it out!”  So I did.  I cried, I sang, I smiled at my neighbours, thought about my mom, and danced around with Miss M. in my arms.

The sermon itself was just what I needed.  A lesson in perseverance, never giving up hope, finding the answers within yourself, and recognizing your own power.  I am realizing that the passages in the Bible are just like Zen koans.  Big lessons stuffed in metaphorical and ambiguous little packages for us to figure out and incorporate.

Then the day after church, I learned about the death of Amy Rauch Neilson – a fellow blogger, terrific writer, mom, wife, and stage 4 breast cancer warrior.  She passed away on May 6, 2012 at the age of 43.  Way too young.

I thought of the sermon at church.  I questioned why another fabulous woman was taken away.  I wondered why some die and some live.  How does this get decided?  Do we have any control?  And again, I am forced to face the severity of my situation.  The average lifespan for people with my diagnosis isn’t all that long.  The percentage of folks who manage to stay alive for the long haul are few and far between.  I’m going to lose a lot of warriors in this journey.  This sucks.

It’s such a weird place to be – stuck in between two worlds.  Watching fellow soldiers go down while still clinging to the belief that I will be the miracle.  But why me?

Cancer is truly forcing me to live with a “beginner’s mind” as Suzuki Roshi would say.  No assumptions.  No judgements.  Just pure wonder and lots of questions.  No attachments to life being a certain way.  Just the here & now.  The present moment.  A challenge to live by my ideals and practice what I preach.

Cancer is a teacher.  Some twisted Zen koan that I have to figure out.   All I know is that in this moment I feel good.  Today was a good day.  And I am praying for many more.

Peace. – T

I am counting down the hours till Miss M and I hit the road for Nashville!  This will be trip # 2 in our North American summer tour.  Looking forward to 5 quality days with my outspoken cousin, her sweet-as-honey husband, their 5 boys, and my talented aunt.  Craving some Southern hospitality and flavour.

I’m also excited about going to church Nashville style.  Last time we were in town we went to a service and I truly had a magical experience.  Tears flowed.  Bodies were swaying.  Marisa was dancing.  Smiles all around.  It was so moving.  So this was my one request for this trip – Can we go to church again??  And so we are.

I’ve been thinking a lot about spirituality, faith, and religion lately.  The breast cancer is demanding that of me.  But even before that, hubby and I were feeling the pull to get more in touch with our spiritual sides.  We started watching Joel Osteen on TV and talking about finding a church community we could become a part of (especially since we were moving to oh-so-religious Ohio).

To be clear – neither hubby nor I have ever really attended church as adults.  Hubby grew up quasi Catholic – showing up at church for a holiday here and there.  And I was raised by two hippie artist parents who let me decide what religion I wanted to be.  So hubby and I actually going to church on a regular basis would be a pretty big deal.

But my mom did expose me to her love of Buddhism from an early age and instilled in me much of the wisdom without me even realizing it.  I always tell the story of how she would bring me to the beach as a child and then suggest we just sit in silence, appreciate the view, and not talk to each other for 20 mins.  I realize now that she was sowing the seeds for my meditation practice.  She gave me my first zafu (meditation cushion) when I went off to college at age 17.  I was SO not ready to use it – But I kept it with me – move after move after move.  And at age 28 I was finally ready to embrace my Buddhist self.  Hubby and I had a Buddhist wedding ceremony in San Francisco where we took the precepts and I’ve been trying to stick to a (relatively) steady meditation practice ever since.

Today I am so thankful to my mom for giving me this gift.  I credit meditation with a lot of my ability to stay calm, centered, and healthy.  Especially with everything that’s happened over the last few years and this crazy breast cancer diagnosis.

At tonight’s support group for young women with breast cancer, one of the other ladies commented to me that I seemed so positive.  I think some people are surprised at the idea of being positive or happy when you’ve been handed a diagnosis of late stage cancer.  But I think when you’re grounded in a strong foundation of spirituality, community, and faith that anything is possible.

It doesn’t matter what religion you are.  If you believe there is something bigger than yourself then you have an amazing resource to tap into.  Whether you do it through prayer, song, being in nature, meditation…  It don’t matter.  From the day I was diagnosed, I have appealed to the Universe and my mom’s spirit to help me through this.  And so far they have.

Amen!

A comment posted on my blog today struck a chord with me.  Someone expressing frustration and hurt over the fact that I do not take a more personalized approach to my blog and make more of an effort to connect and acknowledge all my supporters.

But how the heck do you do that??

From the get-go I have struggled with how to express my gratitude to the family, friends, and strangers that are supporting me in this journey.  I’ve even blogged about this before.  Spoken to my aunt about it.  Sent thank you cards.  Wrote emails.  But I am realizing it is virtually impossible to personally connect with each and every person.

The reality is that every day is a juggling act…  From the time Miss M wakes me in the morning to the time I tuck her into bed at night, my day is full.  When I’m not being an actively engaged mom to a needy toddler (which takes up most of my time), I’m getting the laundry done, or making dinner, or running a household…  And when I’m not doing all that I’m going in for chemo or Herceptin or getting scans, blood work, or genetic testing…  Then of course I have to squeeze in the daily exercise, juicing, meditation, and healthy eating (which means non-stop cooking because eating healthy doesn’t come in a box that I can just throw in the microwave or oven)…  And still find time for my hubby, friends, family and – oh yeah, this blog!

I wish I had the time to personally reach out to every single person that has sent a card, wrote a beautiful sentiment on my blog, emailed encouraging words, or donated something to help me in my fight against cancer.  I truly do.  I read everyone’s comments on my blog with excitement and interest.  I LOVE hearing your thoughts, inspiring stories, suggestions, and well wishes.  The Graceful Woman Warrior committee in Massachusetts continues to forward me the cards that come in full of love and prayers and positivity – And I keep a rotation of them tacked up to the wall or on the fridge for a boost when I need one.  There are also a handful of folks that have consistently gone out of their way to offer BIG support in ways I never even imagined.

I never saw this coming.  Any of it.  I’m still trying to wrap my brain around the enormity of facing stage 4 metastatic cancer at age 37 with a 2 year old daughter and my whole life ahead of me.  Still trying to process the amazing and never ending flow of support and love that just keeps streaming in.  Still trying to understand what this means.  How being in treatment for the rest of my life changes things.

So just know that amidst the craziness of my life I still love and look forward to forging connections with as many of you as possible.  Because those of you who truly know me, know that forging connections is one of my favorite things to do.  I’m a social worker, remember??  It’s all about the relationships.

But if the thank you card doesn’t arrive in a timely fashion, don’t take it personally.  I still love you.

Peace.  – T