Whatever Works

Fun adventure with Auntie N to the Newport Aquarium!

Fun adventure with Auntie N to the Newport Aquarium!

Everyone is talking about Angeline Jolie & her decision to have a preventive double mastectomy.  And everyone’s asking me what I think…

So what do I think?  I think preventive surgery is a very individual decision.  A decision that is best left to the individual to make.  Would I have done the same thing?  Who knows.  My doctors continue to push me to do surgery to remove my ovaries to shut down estrogen production and help “prevent” a recurrence but I have decided (for now) to refuse that surgery.  That’s what works for me.  Undergoing a preventive double mastectomy is what works for Angeline Jolie.

Whatever works.

In general, I feel the medical establishment relies too heavily on surgery and pharmaceuticals to cure all of life’s modern ailments.  I firmly believe everyone would benefit from a more holistic approach to medicine and healing – One that looks at your history, stress levels, outside influences, and mental space just as much as the physical details of our individual body parts. We are so much more than just our individual body parts.  And I can’t get behind any treatment that espouses a narrow-minded, exclusive approach.  Us human beings are complex folks!

The reality is that everyone has an opinion.  A preference.  A different path.  What works for some, may not work for others.  I know I am constantly searching for my path, trying to figure out what works best for me.  Aren’t we all?

My diet is one thing I’m still trying to figure out…  After 8 days with the fabulous Antie N in town my body is still reeling from all the fun we had…  Way more booze than I’ve had in a long time (what I would normally consume over the course of 2 or 3 months I consumed in the span of a week)…  Less sleep…  Lots of indulging (in sweet treats, extra helpings, nibbles of cheese, and empty carbs)…  But it was so worth it!!!   We had a week of fun adventures, play time, girl talk, and truly memorable moments.  So I don’t beat myself up for the indulgences.  It was one kick-ass week with one of my bestest friends.  That’s what life is all about.  My body will re-balance itself.  I’m getting back up on the saddle again. 😉

I actually have Part I of my much anticipated nutrition consult with  Andrea Nakayama scheduled for next week.  I’ve been following her since I read about her in Whole Living Magazine way back in October 2011 – A month before I was diagnosed.  She is a functional nutritionist with a holistic, whole-foods based approach.  I’ve listened to many of her online talks about balancing hormones and restoring the health of our bodies through diet and natural remedies.  I’m so excited to consult with her team about fine tuning my diet and figuring out what works best for me & my body.  If her detailed intake process is any indication of what lies ahead I’m sure our time together will be totally holistic, and very thorough & comprehensive.  I’m psyched.

The other thing I’m still trying to figure out is what’s up for the next chapter of my life.

Auntie N and I are both at a crossroads in our lives.  Having her here this last week, and being able to process that and compare notes was so helpful & therapeutic (for both of us!).  Many people have encouraged me to write.  So I did.  I started writing stuff (other than this blog – which it seems I haven’t gotten around to writing much lately either)…  But I can’t quite seem to get into it.  I don’t feel compelled to write the other stuff yet.  I can’t find my voice.  There’s always something else that takes priority.  Maybe I’m supposed to be writing something different?  Or maybe just doing something different.

One thing I keep feeling compelled to do is use my experience with cancer, the lessons I’ve learned, the insights I’ve gained, and my training as a social worker, to help others through their own difficult periods.  Try to help them figure out what works.

Honestly, I’m just so damn thrilled to even be able to have concerns like this – about my career or fine tuning my diet – instead of living in a haze of treatment side effects and obsessively thinking about my own mortality.  It’s been 5 weeks since my breast reconstruction and reduction surgery.  I’m back to driving again, squeezing in some light exercise here & there, and doing most of my normal every day activities.  The pain is pretty much gone.  I almost feel “normal”.  I guess this IS my new normal…  Normal concerns about what to eat, what job to take, how to stay healthy…  But yet always with this underlying current of questioning, worry, and unknowns.  But I guess we all have that to some degree or another, right?

For now, I will keep searching for answers while still trying to remain open to life’s mysteries.  I will enjoy life and continue making memories.  I will respect other people’s decisions while continuing to honor my own.

And in the end I’ll go with whatever works best.

Peace.  – T

Outdoor painting with Grandpa

Outdoor painting with Grandpa

Nature walk through Wegerzyn Gardens with Auntie N

Nature walk through Wegerzyn Gardens with Auntie N

Making memories at the aquarium!

Making memories at the aquarium!

Having Cancer Does Not Feel Good

breast-cancer-ribbon-2A few days ago the NY Times ran an article in their magazine entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. Everywhere I looked people were re-posting it, adding links to facebook, emailing it to me.  Yesterday, I finally got the chance to read it.

Orenstein takes on a few important topics…   The risk/benefit conundrum of yearly mammograms…  The over-selling of “early detection” as the answer to breast cancer…  Questionable over-treatment and fear tactics…  The unchanged death rates…  And the beyond ridiculousness of the pink ribbon campaign to raise awareness –  I’m pretty sure we’re all aware now.  Breast cancer is big.  It’s wrecking havoc.  We know.  Now let’s use that money for a real purpose, like funding research to find a cure, figure out the causes of cancer, or help metastatic patients live longer.  The messages in Orenstein’s article aren’t necessary new.  But it is nice to see the NY Times giving it press and especially nice to see Orenstein acknowledging the small and often overlooked percentage of us with metastatic disease.

I personally am very leery of frequent mammograms (and other scans for that matter).  I keep reading that the cumulative effect of radiation from regular mammograms actually increases the chances of getting breast cancer.  Kind of ironic, eh?  Just like Tamoxifen increases your risk for uterine cancer.  And breast radiation may cause lung cancer.  And Herceptin may cause heart failure.  Gotta love it.  It’s a constant battle of weighing the odds.  The benefits vs. the risks.

Since being diagnosed in November 2011, I’ve gone through more scans than I care to count and my body’s been subjected to endless amounts of radiation.  In my new approach to this disease I am now saying no to scans every 3 months (as well as to radiation treatment, Tamoxifen, and Herceptin).  When my oncology surgeon recently suggested I get a mammogram & ultrasound prior to my second reconstructive surgery I opted to skip the mammogram and just get the ultrasound.  I mean, when they do find something suspicious on a mammogram they send you for an ultrasound to further confirm anyway…  So why not just skip the questionable mammogram and go straight for the ultrasound?

It wasn’t news to me that death rates from breast cancer haven’t changed in the last 20 years.  While early detection may be finding more cancer, we’re still dying at the same rate.  How can that be good?  Seems like an obvious red flag that the current approach is not working.  While many people realize this, it really sucks that the medical establishment hasn’t caught on yet.   And while I truly appreciate the efforts of researchers who continue to understand more & more about the inner-workings of cancer and how it forms and grows, I hate that what comes from their brilliant research is just more drugs and toxic treatments.

I love Orenstein for giving a shout out to us metastatic folks.  Acknowledging the paltry sums of research dollars we receive.  The terror we often strike in our non-metastatic breast cancer sisters.  Our absence from “feel-good” breast cancer events.  It is important for all those diagnosed with breast cancer to know that no one is immune from getting metastatic disease.  Denial is not going to help you live longer.  Awareness, prevention, and action will.  I know you don’t want to think about it.  But cancer can come back.

Which brings me to the point we should all be thinking about.  Why did we get cancer in the first place?  Illness is our body’s way of telling us something is not right in our lives.  When I was diagnosed with Melanoma-in-situ (basically stage 0 skin cancer) in 2008 I woke up for a few minutes, changed a few things in my diet, started to eliminate chemicals…  But never went beyond that.   Never did the deeper soul searching.  Never figured out healthy ways to deal with stress.  Never took a serious look at what wasn’t right in my life.  My body was trying to tell me something but I wasn’t ready to listen.

So now, with metastatic breast cancer I am asking the big questions…  Where did this come from?  Why is it here?  What do I need to learn?  What do I need to change?  How can I use this as an opportunity to turn my life around, love myself more, and give back to the world?

Cancer is a very complex disease.  It requires a complex treatment plan.  Simply getting a mammogram or changing once piece of the picture doesn’t guarantee healing.  I can eat 100% healthy organic food and exercise every day but if I’m not dealing with my underlying subconscious fears, childhood wounds, dysfunctional relationships, financial problems, or my stressful & unfulfilling career then true healing may not ever happen.

I’m on an endless quest to figure out what’s broken in my life and find ways to fix it or make peace with it.

The battle is multi-dimensional.  Cancer is tireless and all encompassing.  We have to be too.

Peace.  – T

Family Love

photo_2[1]The da Silvas have finally returned “home” to Ohio.  As always, it is bittersweet.

Miss M is overjoyed to be back with all her stuffed animal friends…  Hubby is thrilled to be sleeping on his comfy king size bed again…  I’m happy to be back in my kitchen & reunited with my juicer.  But it’s always difficult leaving the northeast, our families, friends, and the cities we love and returning to the homogeneous heartland of the mid-west.

We had such a great week in NY…  Spending time with family, going to the beach, coaching hubby on his first ever trip to the driving range, sharing lots of laughs, and of course, taking Miss M into the city for her mandatory train rides.

I saw my surgeon on Thursday for post surgery follow-up.  The drain was removed.  After care plans discussed.  No driving (probably for another week or so)…  No vigorous exercise (for another 4 weeks or so)…  Wear my itchy surgical bra 24 hours/day for the next 4 weeks (yes, I even have to sleep in the damn thing).  Then return for another appointment in 4-6 weeks.

It’s been 11 days since the surgery and I’m feeling pretty good.  My mind is clearing.  My body continues to detox from the anesthesia, surgery and pain meds (as well as the less than stellar diet I’ve indulged in over the last week – I need a serious sugar detox!).  I started my new 30+ pills a day vitamin & supplement regime (including the ever important nattokinase to prevent further blood clots).

The pain has been minimal.  So minimal that it tricks me into thinking I can go about my normal activities…  Until I do.  And then the pain starts.  Just chopping veggies for a big salad tonight brought on some twinges of pain.  So I stopped.  I know my limits and I’m not going to push them.  It’s not worth it.

Hubby has been absolutely AMAZING today.  Helping with everything.  Anticipating what needs to be done.  Playing with Miss M.  Doing 4 loads of laundry (and folding too!).  Going on a massive grocery excursion with me.  Preparing the extra bedroom for my dad’s arrival.  I joked with him, “Who are you?  What happened to my husband?  And can I keep you instead?”

I took my second real shower today since the surgery and finally had a good look at my new breasts.  What a trip.

Most of my adult life I’ve had droopy DD cups (except when I was pregnant, gained 50 lbs, and went up to a 36F!).  Now all of a sudden, I have small perky breasts.  Even though my right breast is still real, after being lifted and reduced it’s so damn perky it looks fake to me.  I haven’t measured them yet.  Plus, they’re still totally swollen – so I have no idea what the end result will be but I’m guessing I’ll have a nice set of 34B cups.  And for the first time since I was 12 I may actually be able to go bra-less!!!  Which opens up a whole new world of clothing options (hello, lil’ strappy sundress :-)

I’m still undecided about having further surgery down the road to have a fake nipple reconstructed onto my breast.  Right now it seems totally unnecessary.  But I could change my mind at some point.  Never say never.

Big shout-outs to my family (both in Massachusetts and NY) for making this surgical experience so seamless and stress free.  For taking care of me, hubby, and Miss M…  For opening your homes to us…  Feeding us…  Showering Miss M with attention and love…  Agreeing to play “doctor” or make believe “beach” with her for the umpteenth time or keeping her busy with fun activities…  And helping us get through this difficult time.

I keep saying thank you.  But thank you just doesn’t seem sufficient.  Once again my gratitude cup runneth over.  And I am reminded of the importance of community.  Of family.  Of letting go and not trying to go it alone.

Asking for and accepting help is not weak.  It’s wise.

Much love.  – T

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Making Peace With My New Normal

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My heart is fluttering. My heart is aching.

I am sitting on the Amtrak train heading to NY… Heading towards my next surgery (hubby and I check in at 8:30am tomorrow morning)… And heading away from my family, friends, and my darling Miss M. Sigh… I miss her already.

Miss M and I had a fabulous weekend in Massachusetts. Spending time with those we love… Playdates, sleepovers, nature walks, chit chat, lots of hugs & laughter, and some much needed time by the ocean…

Yesterday, she and I spent 2 hours at the beach just playing, running around, collecting sea glass & shells, and meditating on the ocean waves. I shed a few tears thinking about my mom. Feeling her presence around me. And I also felt a profound intuitive knowing that everything was going to be ok. The surgery. The recovery. The aftermath. The years ahead. It was the same knowing I felt on the beaches of Long Island in the weeks after my initial diagnosis back in 2011. Feeling the Universe’s support. A profound sense of peace and reassurance. An understanding and acceptance of the fight ahead and the ongoing struggle… But at the same time, a level of trust that the path will bring more good than bad. More beauty than pain.

I am learning to live with this disease. Learning to accept my new normal. Getting better at navigating the ups & downs. Better at finding the balance between the two worlds I live in – The “normal” world & the metastatic cancer world.

When people ask if I plan on maintaining my new complicated way of living (the diet, exercise regime, supplements, alternative therapies) for the rest of my life, the answer is always YES. It is my new normal. My medicine. And I’d much rather live this new complicated life than be forever popping pills and IV’ing pharmaceuticals with nasty side effects.

And it’s usually only when I travel, that I realize how complicated or different my new normal is compared to how everyone else lives. Especially when it comes to my diet. As my cousin puts it, “Your bad days are my good days.” This coming after I lamented the bloat & sluggishness i felt from indulging in multigrain tortilla chips and a glass of red wine.

This is the balancing act I face for the rest of my life. One foot in the normal world and one foot out. Going through my days like anyone else, yet forever hearing the reminder, deep inside me that I have a terminal illness lurking, stalking, ready to pounce, ready to take over at a moment’s notice. Forever carrying containers of supplements everywhere I go. Forever struggling to find restaurants where I can eat. Forever wondering if each ache & pain is something more serious. Forever anticipating the results of scans and blood work. Forever knowing that I must remain vigilant in my fight.

Yet, all that being said, i truly feel that cancer has brought me to a better place. I like the new person I am becoming. I feel more at peace, more grateful, more in love with life than I have in a long time. While I still would never call cancer a gift, I can see the gifts that cancer has brought me.

And it’s funny how when you’re able to see the gifts and lessons contained in life’s toughest moments, the world suddenly expands and your place in it becomes rich with possibility.

So here’s to life’s possibilities, uncovering gifts, and finding balance in an uncertain world.

I’ll try to write again as soon as I can after the surgery to let ya’ll know how it went.

Cheers. -T

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Making Peace With the Unknown

Nature walk at Harmony Farm

Nature walk at Harmony Farm

“When you are in tune with the unknown, the known is peaceful.”  – quote from my Yogi chai tea this morning

This has been one of the bigger lessons on my cancer journey – Accepting the unknown and releasing the urge to control.  In doing so, I have come to a greater sense of peace.  Both with the unknown and the known.

I know I have surgery in 9 days.  The plane tickets are booked.  The housing arranged (thanks to the Hope Lodge in Manhattan and my Aunt & Uncle on Long Island).  My support team is lined up – Hubby is taking off from work to be by my side, my Massachusetts team is taking over on “mom” duty with Miss M, and Grandpa is flying from Bowen Island to help out post-surgery.  I know my surgeon plans to use LMA sedation and remove my chemo port while he’s in there.  I know today is the first day I’ve been without blood thinners since October (which is thrilling & terrifying at the same time).  And tonight is my last round of vitamins & supplements until after the surgery.

I also recognize that all of these seemingly “known” pieces of my life can change in a flash.  So I keep taking it as it comes.  Preparing for the immediate task at hand.  Thinking about the future – but not carving it out in stone.

Instead of stressing or worrying about the surgery I’m just staying focused on today.  Focused on this week.  Focused on the joyous weekend we have ahead of us in Massachusetts with our favorite people…  Visiting, going to shows, having sleepovers.  Miss M is beyond excited.  Our daily countdown to Friday’s departure elicits a loud “yippee” and a megawatt smile from her each time we talk about it.

Lately, Miss M is talking more and more about her feelings.  Her concerns about the surgery.  Her hatred of the cancer.  Her fear about me dying.  I’m just so happy she’s sharing this stuff with me now.  I know it helps that I’m talking to her about everything much more openly now too.

Our new morning ritual is to answer a question from the fantastic 3-year journal of Q&A for kids that cousin J from Astoria sent us – (thanks again J!).   Each day Miss M and I eat breakfast and ponder our answers to that day’s question.

Yesterday’s question was:  What do you try to forget about but can’t?

Miss M’s Answer:  “I don’t want to remember your cancer.”

Then a few days ago, during one of our kitchen dance parties Miss M started singing her own tune…  And I quote:

Go away cancer…   We don’t like you cancer…  We fight you cancer”  Belting it out at the top of her lungs to some make-believe tune that she made up while we shook our booties all around the kitchen.  It was priceless.

Yes, she’s still clingy.  Yes, she still has tantrums.  Yes, she still drives me crazy.  And yes, I still worry about her.  But less and less so lately.  I am putting into practice a lot of the parenting advice everyone’s offered.  I am sticking to my guns.  Not letting guilt fuel me.  Trying not to baby Miss M or solve all her problems.  Talking openly about what’s going on.  Taking her to therapy.  Taking her to more of my medical appointments (I even brought her in for a reiki session with me at Harmony Farm because she was so curious).  So far, it seems to be working.  So thanks to each and everyone one of you for your suggestions.  I am listening.  And it is working.

I finally feel that life is heading in a positive direction.  For the first time in a really, really long time.

At Friday’s appointment with my Oncologist he actually used the word REMISSION!  And called me his ‘miracle patient’.  Damn that feels good!

And while i know there are no guarantees, I am much more in tune with the unknown these days, and it makes dealing with the every day dramas and “knowns” of life (like surgery) so much easier.

Peace.  – T

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Checking out the animals after the Easter egg hunt at a nearby church.

Checking out the animals after the Easter egg hunt at a nearby church.

Here We Go Again…

Family fun at Charleston Falls Park

Family fun at Charleston Falls Park

Another major medical procedure is drawing near and Miss M is totally starting to freak out.

She has become a little leach – stuck to me, attached and unwilling to let go.  I can’t go to the bathroom, leave the room, take a shower or make a phone call.  Her tantrums are out of control.  Anger.  Fear.  Sadness.  Worry.  It’s all there – in her precious little 3 year old self.

I don’t blame her one bit.  It’s hard enough processing everything as a 38 year-old with some life experience, let alone as a fresh faced pre-schooler.  This is hard on everyone.  I get it.  Cancer sucks.  And we’re all a little angry and fearful and sad and worried.

But it’s so damn hard dealing with her out of control behavior.  And not knowing what to do about it.  The other day we were stuck on the side of the road for 45 mins while she just screamed & yelled & cried and refused to get in her car seat.  And of course I can’t physically gain control in these situations because every move she makes has me immediately sheilding my chest – scared she’s gonna break my breast expander or dislodge my medi-port.  So what do i do?  I just sit there.  I sit there and listen to her scream and cry and wail and whimper and spit up all over herself.  And I wait for it to end.  I don’t know what else to do.

I realize these extreme moments mostly happen when she’s tired or hungry.  (Isn’t that always the way?)   Plus, right now we’re transitioning into the “no more naps” stage, which I’m sure isn’t helping matters.  Nor did the recent time change.

I also know she’s pissed that i’m going to New York without her on Monday.  When I told her she immediately asked if she was going too and looked heartbroken when I told her no.  How do I explain to her that it costs a lot of money to keep flying us both out?  That i don’t want her to keep missing school?  That sometimes it’s easier to go to my appointments without her?

What’s a mom to do?

I know her feelings are very close to the surface.  She’s trying to process what’s going on and what’s about to happen.  And on the flip side of things, she just started telling me over and over again, throughout the day, that she loves me.  “Mamae…  I love you.”  Over and over.  At random moments.  It’s so damn adorable.  I love her too.  So so much.

Thank god for therapy – hers AND mine.  Miss M’s therapist (also a fellow social worker) is amazing.  And Miss M feels totally comfortable talking to her about stuff.  It’s great.  Apparently Miss M spoke about her worries that I was going to die…  Her fears about the pain I might have in surgery…  And her questioning if we’re still keeping secrets from her.  The two of them are brainstorming ways Miss M can help me after surgery…   Bringing me water…  Laying down & reading books with me…  Giving me hugs & kisses…   And they talk about ways for her to vent her frustrations…  By hitting her pillow or stomping her feet.

Thank god she’s talking about this stuff with someone.

Hubby says I just need to give her extra love right now.  Which makes sense.  So I’m trying.  More focused attention.  More play time.  More hugs & cuddles.

I swear, being a parent is by far the most difficult thing I’ve had to face in this life.  (Well, ok – facing breast cancer is up there on the list too).  I remember my mom always telling me I was her biggest teacher.  I get it now.  I understand mom.

And that’s all I can do…   Try my best to understand…   And then remember often times there is no answer.  No understanding why.  It just is what it is.  Nothing more.  And you gotta just deal with it.

You can’t control the hand that you are dealt, but you can choose how to play it.  And sometimes, if you play your cards right, you can even win the game with a really shitty hand.

Peace.  -T

My silly goose!

My silly goose!

A little QT with Miss M at Wegerzyn Gardens MetroPark

A little QT with Miss M at Wegerzyn Gardens MetroPark

So Now What?

The great big sky

The great big Ohio sky

So now what?  I find myself asking that question a lot lately.

I’m feeling better – so now what?  I’ve gotten rid of the cancer – so now what?  All major crises are temporarily diverted – so now what?

Even though I’m in the midst of figuring out logistics for my next surgery (now set for April 10th) and my treatment is technically not complete yet, I feel different.  Like I’m ready to step into my new life.  Start the next chapter.

Finding out that my cancer is gone is of course a major catalyst in my new zest for life.  For the last year I refused to commit…  To people.  To plans.  To projects.  My vigilant focus on remaining in the moment kept me sane.  It helped me stay away from dwelling on the uncertainty of my future or the possibility of my own death.  It helped me conserve energy for the fight.  But it also stopped me from living a life outside of cancer.

Now I feel free to consider life beyond the moment.  To make plans for my future.  To make commitments to causes and projects I once believed in.  To take steps towards creating an inspired life.  A life worth living for.

I recently joined forces with some local social workers – to offer my own social work experience and knowledge and help them birth a promising new non-profit…   I signed up for Marie Forleo‘s B-School with the hopes of gaining some clarity about my own career…   I’m entertaining the thought of writing professionally…  I’m using therapy sessions to explore my passions…  I’m starting to believe that it is possible to make a living doing something you totally love.

The whole process is fascinating now because I feel like a different person.  Having breast cancer and facing death changed me.  Better yet, I chose to change.  I refused to allow this horrific experience to break me.  Instead, it infused me with a new drive to live.  It awakened me to the infinite possibilities contained in living.  It is driving me to live the best life possible.  Reconnecting me with my authentic self.  And arming with new-found strength, inspiration, and self-awareness that I know will enable me to give back to the world in a way I wasn’t capable of doing before.  It’s all so exciting!

I have found that there are many ways to respond to life’s horrors.  And I have tried quite a few over the years…  From deep denial and numbing myself with drugs after being raped at age 21…  To pushing down my feelings and running on pure fumes after my mom died in 2010…  But this time, I decided to try something new.  I elected to face the horror head on.  To feel the terror and still go on with life.  To take the difficult steps necessary to transform myself from within.  And actively try each day to use the horror as a lesson on living.

For all of you out there facing your own personal horrors…  You can make it through.

Ask for help…  Search within…  Love yourself…  Face your demons…  Make peace with the struggle…  Seek to discover why the horror has come to you…   Ask “So what now?”…  Then use the journey as a starting point for a new way of living.

Peace.  – T

 

Keep On Walking

Miss M beach side viewThe da Silvas have returned from a glorious week in Mexico!   We had a heavenly time.  Spent every day at the beach…  Playing in the sand…  Swimming with the fish…  Listening to the intoxicating rhythm of the ocean waves…   Just doing a lot of nothing.  It was just what the family needed.

On our last night there I took a walk along the beach after dark.  The sky was lit up with stars and I had the whole beach to myself.  As I walked I noticed how different the ocean looked at night…  No longer tranquil and welcoming…  The darkness made the water ominous and I felt a bit anxious and afraid.  I cut my walk short and returned to our room.

I think so much in life can be terrifying when we’re in the dark.  I guess that’s why we try to plan, control, and manipulate things as much as possible.  Believing this will remove some of the unknown.  Lessen the fear.  But in truth, we can plan all we want but life will continue to throw unexpected curve balls.  After all that I’ve been through in the last 3 years I now realize this more than ever.

It also casts my recent scan success in a different light.  Yes, I am overjoyed about the news of my cleans scans…  But I still recognize that the future is unknown.  That life may throw me another curve ball.  That my scans may not always be clean.  The cancer can come back.  And my journey is far from over.

Miss M tells her therapist that she thinks we’re keeping secrets from her about my cancer.  If I’m cancer free now, she wonders, why do I still have so many doctor’s appointments?  Although I wish my cancer saga ended with the results of those last scans, that is not the reality.

Today I made calls to start organizing the next piece of my journey.  I scheduled my next reconstructive breast surgery for April.  I confirmed with my oncologist that it is ok to remove the port in my chest when I go in for surgery.   I made an appointment for the end of February with a new holistic cancer team in New York.

The saga continues.

And although the future is still unknown, these days I feel like I am better at dealing with whatever comes my way.  My journey with cancer has brought me to a better place internally.  I am a different person now.  More grounded.  More present.  More easygoing.  Less controlling.  Better able to deal with life’s difficulties.  And fully aware of my blessings and the beauty of my life.

I continually seek to acknowledge the dark places, the fear, and the unknown…   But then keep on walking forward – refusing to let fear hold me back from exploring all that is in front of me.

Much love to all…   – T

palms on the beachMe & Miss M beach

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Living With The Invisible

NYC skyline from Central Park

NYC skyline from Central Park

On my recent travels to Toronto and NY I was struck by the dichotomy of my two realities – On the outside I am just another ordinary, healthy looking mom…  But the truth, that is invisible to most, is way more complicated.

Breast cancer has changed me.  It influences my decisions.  It shapes the details of my days.  It is on my mind constantly.  It is a nagging voice in my head.  A terror that comes alive at random moments.  Every little pain is a potentially life threatening complication.  A constant reminder to choose wisely and live fully.

And yet, all of this goes largely unnoticed by those on the outside looking in.  The battle is invisible.

While it is nice to blend in sometimes (and I am beyond grateful that I am as healthy as I am) it also feels a bit incongruent.  The outside me who appears to be totally fine and the inner me who is waging a war against death.

A part of me wants people to know the truth.  I want people to see my scars.  To understand how different my life is now.  To know that I am fighting for my life here.  I want my struggle to be acknowledged.

It is so weird going about your day-to-day life with these massive internal battles that are invisible to the world around you.

I often walk the streets and wonder who else is living this way?  What internal battles are other people dealing with?  Could the barista making my coffee have an abusive husband at home?  Is the flight attendant dealing with an auto-immune disorder?  Was the girl getting on the school bus raped or molested?  Is the garbage man battling depression?  Did the clerk at the grocery store just go through a miscarriage?

All of us have internal wounds and battles – invisible on the outside but felt deeply on the inside.  Trying to face our fears, fight our battles, and heal our wounds is a lifelong practice.

In my own fight I recognize that the hard work I am doing is paying off.  The effort I make every minute of every day to live a healthier life and heal my wounds is helping tremendously.

But I also live every day with the knowledge that the median survival time for metastatic breast cancer patients is 3 years.  And I’ve already lived one of those years.

I try not to think about my death.  I brush away the statistics and try to focus on living.  Focus on the potential.  Focus on the flip side of the coin that tells of women living for decades.  Focus on the possibility of complete remission – despite the odds.  Focus on the miracles in life.

Monday I go for next PET scan.  I believe in my heart that the scan will show no evidence of disease.  I have to stay in the space of hope.

I have also decided that I am going to stop taking the Herceptin.  My last dose was at the end of December.  I really want to get off the meds so I can give my body a chance to detox and rebalance itself – naturally.  I haven’t told me doctor yet.  I’m a little nervous about his reaction.  But am going to stick to my guns on this one.  Just as I did with refusing to take the Tamoxifen or Arimidex to suppress my estrogen.

Recently people have reached out with many questions about my natural regime.  What I eat.  What exercises I do.  The supplements and vitamins I take.  The psychological work I am doing.  So in the coming weeks I plan to post more in depth explanations of the work that I am doing physically, psychological, spiritually, and environmentally.

It is a heck of a lot of work to live the way I do.  But I do feel great.  And everyone keeps telling me I look great too.

For me, there is no other option.  I want to live.  And I will do everything I possibly can to see that happen.  I understand that nothing in life comes easily.  You gotta work hard to see results.  I am ok with that.  And I’m willing to do the work.

One day at a time.

Peace.  -T

Exploring Central Park with Miss M

Exploring Central Park with Miss M

Good times with best friends!

Good times with best friends!

Don’t Discount The Hard Work

Me & Miss M at Rockefeller Center

Me & Miss M at Rockefeller Center

I know, I know…  I’ve been MIA lately.  I haven’t been writing nearly as many blog posts as I used to.

There are a number of reasons for this (none of them bad).  And most of it comes down to the fact that I’ve just been busy.  Busy with life.  Busy doing other writing (I entered a piece into the Glamour Magazine writing contest last week).  Busy traveling (another trip out east – which I’m still on).  Busy planning for the holidays.  Busy taking care of myself.  Busy having fun with Miss M.

This week Miss M and I took off for a week long journey to NY and Massachusetts.

I had three doctors appointments in NY.  Fortunately, Auntie L was gracious enough to drive down from Massachusetts to keep Miss M busy and happy while I was at the doctor.  Although I have to say, keeping Miss M happy in NYC is fairly easy task.  Just take a ride on the subway.  Of course, Miss M has her favourite lines:  the 7 train, the N & Q, and most recently the F train.  She would be in heaven just riding the trains all day long.  And we may just do that the next time we’re in town.

People often ask why I chose to have my surgeons in NYC even though I live in Ohio.  The answer is multifaceted.   Primarily, I chose NY because it is home.  Because it is familiar.  Because I am most comfortable here.  I chose the NY surgical team because they were recommended by a fellow breast cancer warrior and friend.  Honestly, I trust the NY doctors more.  They have more experience, impressive backgrounds, and amazing skills.  Plus, I have a soft spot for my team because they used to work at St. Vincent’s Hospital in the Village – where Miss M was born.

And of course I chose NY because it provides me with the perfect excuse to come back to my beloved Big Apple on a regular basis.  Being “forced” to return to NY every few weeks has been an amazing gift.  Spending time in NY gives me such a boost.  It allows me to reconnect with myself.  Brings me back to reality.  Re-energizes me.  Reminds me that there is life outside of suburban Ohio.

This week I received my usual check-in and saline injection from the plastic surgeon, as well as, my two-month follow up with the oncological surgeon who performed my mastectomy.  Both surgeons said all looks good.  I will return to NY two more times (later this month and once in January).  Then we will schedule the final surgery for April (where they remove the expander, put in my implant, and reduce & lift the other breast).

My third appointment this week was a consult with a new oncologist that a friend referred me to.  I was looking to get another opinion on what is next for me.  The oncologist is a young, charming, smartly dressed Park Avenue doctor.  One of the country’s top oncologists and one of New York’s best doctors, he is charismatic and dedicated to his patients.  He said I was a “complex” case.  He wanted more time to review my stack of medical papers before making further recommendations.  But he did seem to support the traditional stance that I should be taking meds for the rest of my life.  However, when I challenged this, by pointing out that my next set of scans will likely reveal no evidence of disease, and questioning if it is still necessary to take all these meds when there are no tumors evident, he admitted that is something to consider.

What I took away from the meeting was his recommendation that I stay on Herceptin for the rest of my life (or until my heart can’t take it anymore), and that I have my ovaries removed at some point in the near future.  He was impressed with the aggressive actions I’ve been taking thus far and encouraged me to stay on an aggressive path.

What I also took from this meeting was the feeling that I am being treated like all other stage four breast cancer patients.  Which I guess is to be expected.  Every doctor I see makes similar recommendations.  Seems to have similar expectations.  I get the sense that they don’t think I will live too long…  That they feel it is necessary to endlessly blast my body with pharmaceuticals (with minimal regard to long term side effects) assuming I won’t be around long enough to have those side effects.

This is where the difficulty lies for me.

I don’t see myself the same way.  Maybe I’m naive, or deluded with wishful thinking, but I honestly feel like I’m gonna be around for a long, long time.  And I don’t want to go through all this only to have a heart attack in 7 years as a result of some med I took.  Or die from another form of cancer or organ failure caused by the meds I am taking.

I still believe I can be the 1 percent that is cured.  The small percentage that keeps cancer at bay for the rest of my life.  And why not?  With all that I am doing, and committed to continuing, why can’t it be me?

I consistently feel like all the efforts I am making to live the healthiest life possible are not recognized by any of the doctors I see.  That anything outside of surgery or medication is discounted or ‘pooh-poohed’.

But I honestly believe that everything I am doing – from the vegan, plant based diet, to the daily exercise, vitamins & supplements, ongoing psychotherapy and mental/emotional work, removing toxins from my environment, and devotion to living my best possible life – makes a big difference.  I have flipped my life upside down and committed myself to a whole new way of living.  If my body/soul/and mind are healthy and balanced how can disease possibly take root?  I am not just doing one thing here…  One thing there…  I am doing EVERYTHING I possibly can.  And I will do this for the rest of my life if that is what I need to do to keep living.  And the beautiful thing is that the side effects of my new healthy lifestyle have me feeling and looking better than ever.  I have the energy to enjoy life.  I am more centered.  I am in a better place – despite having stage four cancer.

I am not done here on this planet, in this body, with this life.  I have so much more to give.  To teach.  To enjoy.  The doctors and their “standard treatment” options can take their death sentences and endless pharmaceuticals and shove ’em.  Do not discount my hard work!

I continue to embrace all possibilities.  And live with hope and faith rather than fear.

Love to all…  And I’ll try to start posting a little more often :-)

– T

Family dinner at Candle Cafe - one of many amazing NY vegan restaurants.

Family dinner at Candle Cafe – one of the many amazing NY vegan restaurants – with Miss M, Cousin J, and Auntie L

Times Square fun!!

Times Square fun!!