Happy Birthday Mom!

Niagara Falls

Niagara Falls (2005)

Bowen Island (2009)

 

Hunter College Graduate School of Social Work -
New York City (2005)

Today is my mom’s birthday.  She would have been 64.

Unfortunately, as most of you already know, my mom passed away almost 2 years ago.  Cancer.

But today I celebrate her birth and remember the brilliance of Jeanne Robinson – dancer, writer, choreographer, Buddhist, sister, wife, friend, aunt, and of course, mother.  I could go on and on about how kick-ass my mom was.  Anyone who met her knows exactly what I’m talking about.

I took some time by myself today to walk in the woods and connect with her.  Listening to the birds.  Watching the ripples on the pond.  Feeling the breeze.  Telling mom how much I miss her.  Wishing she were here with me during my own struggle with cancer.  Crying.

I’ve been crying all day.  Thinking about her.  Remembering.  Watching old videos of her and Miss M.  Looking at photos.

In doing so, I realize that amidst all the turmoil and sadness of mom being sick there were still so many moments of joy, laughter, dance, music, and love.  The videos and photos were full of them…  My mom and dad singing and playing guitar while Miss M bounces up and down to the beat.  The family walks through the magnificent rain forests of Bowen Island.  Miss M giggling and my mom soaking up every possible piece of her.  The love we all felt just being together.

I am so glad Miss M was born when she was.  I’m sure it was no coincidence.  Miss M helped us stay rooted in the moment and not dwell on the fact that mom was sick.  She made my mom so happy and allowed her to forget about the cancer.  Even now, Miss M continues to lighten our days during our second round of cancer.  It is no coincidence that she arrived when she did.  Miss M and my mom had a special bond.

Today, on my mom’s birthday, I remember all the good memories.  Today I give thanks.

Thank you mom for being such an inspiration.  Thank you for showing me it is ok to be a parent and still go after your own dreams.   Thank you for loving me unconditionally.  Thank you for modeling compassion.  Thank you for being my #1 cheerleader.  Thank you for helping me become the strong, confident, and loving woman I am today.  Thank you for being my mom.
Happy Birthday!
 

Keep On Keepin’ On

We have good news and bad news.

The bad news is is that my white blood count dropped to 1,500 this week (down from 2,400 the week before).  But the good news is that I got my chemo anyway.  With only one more week to go in this round of chemo I’m just eager to get it done with and see the results of my first set of scans.  Luckily, Dr. K is on the same page.

The other beautiful thing about yesterday’s appointment was that both Auntie L and hubby got to join me.  Hubby finally got to meet the fabulous Dr. K and my kick-ass nurses!  And I had the pleasure of having two of my favorite people there with me – A nice change since I usually fly solo to all my doctor’s appointments and chemo sessions and scans.  Dr. K was kind enough to sit with us for over half an hour – patiently answering questions and discussing plans for the months ahead.  He is such a kind and caring doctor.  I’m so glad I went with my gut feeling and chose him.

So I’ve agreed to suck it up and take one more shot of the Leukine to boost my white blood count.  Hopefully that’ll keep my counts high enough to get my last dose of chemo next week and keep things on schedule.  If all goes according to plan it’ll be scans the following week…  Results shortly thereafter…  And then a break from chemoland with a fabulous trip to visit my “crew” in Toronto for a week or two with Miss M.  Woohoo!!!

Our visit with Dr. K yesterday reminded me of how endless this process is.  How I’ll be forced to manage my illness and symptoms for years and years to come.  How metastatic disease is so different from early stage breast cancer.

I think one of the most difficult things for me to swallow about my new life with metastatic BC is the reality that I will likely be on some type of pharmaceutical drug for the rest of my life.  Endless rounds of different chemo drugs…  hormone treatments…  targeted therapies…  A tough pill to swallow for this “all natural” girl.

So yes, I’m almost done my first round of chemo.  Yay!  But even though I applaud this first step I also realize there is so much more to come.  And although I feel pretty damn good these days, I may not always feel this way.

The truth is that when I allow myself to think about how devastating stage IV breast cancer can be, my heart beats a little faster.  A sensation of terror flows through me.  I get scared.

So I try not to think about how bad things could be and instead focus on the success stories.  Like Katherine Russell Rich who has been living with metastatic breast cancer for almost 20 years now.  Listen to her radio interview on This American Life.  These are the people that keep me going.  That keep hope alive.

I have to keep hope alive.

Peace.  - T

Make Lemonade

What a fantastic weekend!!

The fabulous Auntie L returned on Friday for another week long helping visit.  Yay!  And hubby and I took off to Cincinnati on Saturday for an overnight adventure to celebrate our 9 year wedding anniversary (the NY City Hall 2 minute wedding – not the spiritual ceremony in San Francisco).  This was our first night away (together) from Miss M since she was born almost 3 years ago.  A much needed opportunity to reconnect and remember why we love each other.  A reaffirmation of our commitment to one another and our life together.  And of course, a chance to sleep in late, order room service, and eat breakfast in bed.  Amen!

With each day that passes I am learning more and more about the limits of my new life and body.  I realize that I can’t handle the same amounts of activity…  or booze…  or rich food that I used to…  The Pinot Grigio and chocolate cake I had last night left me feeling crappy in a way that almost makes it not worth the few moments of pleasure it gave me.  I am trying to establish my new normal.  Figuring out how far I can push things and still feel good.

Even with metastatic breast cancer I’m still enjoying life.

Maybe things aren’t as awful as we imagine them to be.  Life in Ohio ain’t all that bad.  Not nearly as awful as I thought it might be.  Stage 4 breast cancer?  Yeah, it sucks a lot of the time.  But it hasn’t made my life totally awful.

Maybe it’s really about what you make of the turmoil and not the turmoil itself.  Shit happens to everyone.  Life has lots of sucky moments.  But life only becomes truly awful if we allow it to be.

I will not allow it.  Just use your lemons to make lemonade.

Peace.  – T

The Natural Fight

Just a quick post to let everyone know that I got my chemo again today!  This is the fourth week in a row that I’ve managed to keep my white blood count up high enough to get chemo using natural methods instead of pharmaceuticals!  Yay!!!  And this week my count rose again – another 100 – to 2,400.  So even though the chemo is definitely wearing me down in other ways, it can’t beat all the things I’m doing to keep my immune system strong.

Just another reminder that the standard treatment is not always the best one.  It is important to thoughtfully and intelligently consider ALL options and choose what feels right.  The answers are inside each and every one of us.

For me, taking a bunch of “meds” to tackle every issue never felt right.  In choosing other “natural” options I have shown that the answers do not always lie with a pill.  Of course for many people taking a pill (or two or three or four) is much simpler than exercising every day, eating healthy, working through emotional issues, and actively pursing other treatment options.  I get it.  But for me, natural healing along with some western medicine is the way to go.

And obviously it’s working.  So I’m just gonna keep doing what I’m doing.  Two more weeks of chemo to go…  Then it’s scan time and we’ll get to see the fruits of all this labour.

Peace.  – T

Respect Yourself

Wow.  I have been totally MIA from the blogosphere all week.  What happened???  I’ll tell ya – It was summer weather and visiting friends.

Just this morning the latest troupe of visiting helpers hit the road.  The house seems very quiet now.  Having my girlfriend V here all week with her 2 1/2 year old munchkin Miss C (one of Miss M’s dearest friends from Bowen Island) was a beautiful thing.  Just watching Miss M &  Miss C sing “Row Row Your Boat” together in the bathtub…  Negotiate over stuffed animals…  and run around on the grass in their socks, under the sun…  It was a joy to behold.

Of course the other side of the visitor coin is that I often spend so much time entertaining, sightseeing, and creating memories that there is not much time left over for blogging.  Or managing the day-to-day of our lives.  Or resting.  And as much as I need and LOVE the visits from family and friends, sometimes it’s nice to reclaim our home for a week.  Just me, hubby, and Miss M.

I think part of the struggle that arises when people visit surrounds the preconceived expectations we all have.  I expect to keep living my life as I always did.  Cancer be damned.  And my visitors expect to see a sickly looking cancer patient who doesn’t get off the couch much.  Neither are completely true.

The reality is that I am doing a pretty good job of living my life as usual.  My energy is decent.  I have a healthy appetite.  The side effects from the chemo are minimal and livable (hair loss, nail pain, occasional nausea & fatigue, nose bleeds).  But if I live my life carefully and healthfully I rarely have pain and look pretty “normal”.  I can’t even tell you how many times people have told me (with a surprised tone) “Wow! You look so good”  Or…  “But you don’t look sick”.

The cancer forces me to take care of myself.  Before I was diagnosed I could push my body and mind pretty far and still rebound.  Now, the slope is much more slippery.  A full day of just doing lots of normal fun stuff can push my body over the edge.  Case in point – Friday’s trip to Cincinnati with my girl Miss V and two antsy toddlers.  By the time we got home I was having chest pains, leg pains, and was beyond exhausted.  These are the moments I remember that I do have cancer.

Things have changed and I need to figure out this balancing act that is my new life.

To clarify my previous writing…  I do not believe that I am to blame for my cancer.  There is no blame.  I just recognize that my life, my body, and my spirit has been very taxed the last few years.  My defenses were down.  The cancer saw an opportunity to move in and it went for it.

But I also believe that with the actions I take now I can reclaim my life.  Re-charge my battery.  Leave no room for disease to grow.

Our bodies always speak to us.  The problem is most of us are not listening.  Whether it’s cancer, back pain, migraines, excess weight, disease…  It’s all a big red flag trying to get your attention.  Trying to tell you something is not right.  Trying to get you to look inside.  Get in touch.  And respect your body, your life, and yourself.

Peace.  – T

Dad Chimes In

My dad – the infamous author Spider Robinson – would like to share a few thoughts about the noble task of caring for a loved one with cancer.  Having been on both sides of the equation I couldn’t agree more with his sentiments.  So here we go…

EU TE AMO, MEU GENRO! (a guest post by Spider Robinson)

I am grateful to my daughter for allowing me to hijack her splendid blog for a day.  I want to use it to propose a quick toast to The Unsung Hero, the overlooked warrior who is currently fighting one of the most difficult battles imaginable: one in which there isn’t a damn thing he can do, but keep smiling as if nothing were wrong.  I speak of course of Terri’s Heroic Hubby, Heron Gonçalves da Silva.  I happen to have walked a very long mile in his shoes, and I’m here to tell you all—since he can’t—how much his feet hurt, right now.  So much, it’s hard to remain standing.  And still, he keeps going.

There are two full-grown Graceful Warriors in the da Silva family, and only one of them is a woman.

When something attacks their loved ones, men are supposed to fight bravely, ferociously.  It doesn’t help at all that there is no enemy available to attack, here.  Heron’s wife is under deadly threat, and everything in his warrior heart yearns to hunt down whoever’s doing it, and kill the bastard, as many times as necessary.  And he can’t.  He is more helpless than if he had no arms or legs: he can’t even try to bite the enemy to death.  I remember very well the sense of total panic that can overwhelm you in those circumstances.  It’s the kind of dilemma that can send some completely round the bend; I don’t mind admitting that at times it very nearly finished me.  But Heron knows he can’t afford that kind of self-indulgence.  He just keeps on coping, quietly, steadily, every day, every hour.  I have watched him deal with Terri’s situation literally from day one, and I want to say I am seriously impressed, fiercely proud of my amazing son-in-law.

All the time Terri’s mother was battling cancer, well-meaning friends would always thoughtfully remind me to be sure and remember to take care of myself, too.  Unfortunately, none of them ever came up with a concrete suggestion as to exactly how I might do that.  Not their fault: there just aren’t many good suggestions for how to endure the unendurable.

But by accident, I stumbled across one thing that helped more than you might think: small self-indulgences.

I found it really helped to treat myself, in small ways, any chance I got.  Go a few extra bucks for the Haagen-Daaz, for a change.  Buy some of the CDs on your own amazon.com wishlist.  Spring for the really good coffee.  Get that hardcover book you’ve been jonesing for, instead of waiting for the paperback.  Little things like that.  You might be amazed how much such silly little things can affect your morale.  If you feel powerless, empower yourself.  My personal hero, Robert A. Heinlein, taught me, “Budget the luxuries first.”

So if you’re making up a care package for Terri—goodies, dollars, whatever—please consider throwing in a few good cigars for Heron, or a twenty dollar bill or two earmarked specifically for him, perhaps for purchase of cachaça, the magical ingredient of his favorite drink, the caiparinha.  And don’t forget to throw him a personal Attaboy, every once in a while.  What he’s doing is, although he’d probably deny it, at least as hard as undergoing chemotherapy….and the person who’s usually in charge of improving his morale is busy at the moment, letting him improve hers.

So let’s remember his courage and sacrifice, and throw him a respectful salute: he deserves it.

Hip, hip—Heron!  Hip, hip—Heron!  Hip, hip—Heron!

Obrigado, meu genro.  I am so glad my daughter chose you—and so was her mother.

–Spider

Ask For It

More good news today…  I kept my white blood count high enough to do chemo yet again!  This is the third week in a row!  And get this – my count today was 2,300 (up 400 from the previous weeks & above the required count of 2,000)!!!  Woohoo!!!

I think my entire medical team is a little amazed and flabergasted.  But also so genuinely happy for me and encouraging of the alternative and complementary path I am taking.  Which is awesome.  Having a medical team that is supportive and optimistic makes all the difference.

My oncology nurses are continually suggesting and finding ways to tweak my treatment to make it as non-invasive and easy as possible.  We switched from IV Benadryl to over the counter…  We went from Taxol (which brought on a gagging and burning sensation) to Taxotere…  We switched my IV anti-nausea meds from Zofran (which made me so light headed and dizzy I couldn’t read during my chemo session!  I know – the horror, right?!) to Anzemet…  And now my chemo days aren’t really all that bad.  I get 3-5 hours of uninteruppted “me” time.  To read a good book, chat with the nurses, make a few calls, relax.

And of course my oncologist – Dr K – fights right along with me.  He too, tries to maximize my quality of life while still doing what is necessary to beat up the cancer.

This week Dr K supported another of my requests; to hold back on the Zometa.  After recently reading some horrible stories about Zometa (this is the drug that is supposed to strengthen my bones and prevent the tumors in my leg from causing pain or fractures) including ongoing lawsuits, reports of jaw problems, and even bone fractures (isn’t this the drug that is supposed to PREVENT fractures?!??) I’ve been seriously thinking about scaling back or not taking Zometa anymore.  When I discussed it with Dr K he said he’d be willing to hold off on the Zometa until after we get the results of my next scan.  Then we can decide.  Yay!  This means no more Zometa (and its nasty side effects) for me for the next month (and maybe beyond??)

I know one of the lessons cancer has come to teach me is to ask for what I want.  Not to use passive agressiveness or guilt to get what I want.  Not to assume that people know exactly what I need.  And not to worry so much about hurting or pleasing other people.

I remember a scene in the movie 50/50 (which you all MUST see by the way!!!) where the main character (who ends up getting cancer) is faced with a situation that upsets him but he doesn’t say anything – just stuffs down his feelings.  Not wanting to ruffle any feathers.

That scene stuck with me.  I realize I do that too.  And I remember reading somewhere that cancer has a tendency to develop in folks like us.  The ones who don’t speak up.  Who try to do everything right.  Who can’t ask for what they want or need.

So now I am trying my best to make my voice heard.  To ask for what I need.  And not feel bad about it.  Instead of accepting that I have to take Zometa I am telling my doctor that I really don’t want to.

For anyone out there facing a medical issue I implore you to get a good team and fight for what feels right to you.  We know our bodies better than anyone else.  So it’s up to us to speak out and be active decision makers in our own treatment plans.

Make the choice to be an active decision maker in your life each and every day.

Here’s to another beautiful day & many more to come…  - T

 

In The Moment

It’s been interesting to see how cancer really brings you into the present moment.  Turns your life around and dumps you in the here and now.  Every day is genuinely different for me.  And I never know how the day will be until I’m in it.

If I wake up feeling like crap (like yesterday) my day becomes focused on staying low-key, doing a lot of nothing, feeling a little sorry for myself, and eating crappy food because I “deserve” it cuz I’m sick…  Boo hoo…  Poor me…  Then a new day comes (like today) and I’m feeling good.  The sun is out.  I can go on an adventure.  Invite friends over.  Have fun.  Create memories.  And almost forget that I even have cancer.

Not knowing how I will feel each day has totally forced me to live in the moment.  It’s hard to make plans because I never know if I’ll be up to it.  Even when I am up to it, I’m not always fully able to enjoy it cuz I feel so crappy.  So now I wait to make plans until the day of.  A whole new way of living for this control freak excessive planner.

At the heart of all the stories I hear of people living with metastatic cancer well past their “expiration date” is a sense of iron-clad determination and refusal to give up.  Like the fantastic lady we met today at the public market who was told over 30 years ago that her metastatic breast cancer would kill her – and fast – but she’s still here.  She said what got her through was her attitude, the support she received, and getting rid of the emotional baggage that allowed the cancer to thrive in the first place (in her situation the baggage was her alcoholic ex-husband).

In my own fight I am really trying to understand what cancer has come to show me.  Why it came.  What lessons I’m supposed to learn from this.  What emotional baggage I have to work through.  I know if i don’t learn the lesson now it will continue to come back again and again and manifest itself in different ways until I finally get it.

In the meantime I’ll just keep living in the moment.

Love to all.  - T

 

Lucky Pants

A quick note just to let everyone know that I did it!  I managed to keep my white blood count up high enough to do chemo again this week!  Yay!  Just like last week, my count was 1,900 (close enough to the ‘required’ number of 2,000 to get the go-ahead from Dr K).  Tonight I’m feeling groggy (par for the course on chemo Tuesday) – but good.

Miss M is also back to her happy self (most of the time).  And we had a big moment when we went to pick her up at daycare today and she was having so much fun she didn’t want to leave!  No more teary tantrums.  Just happy moments.  Another yay!

Sometimes I think about how good I feel and how convinced I am that I am going to beat this.  Not just live with this for the rest of my life.  But beat this.  ‘Clean scan’ – beat this.  And then I read the stories of other women dealing with metastatic breast cancer like Amy Rauch Neilson in her blog ItsInTheGenes.org.  And I realize I am not immune.  Amy’s been in & out of the hospital all this month and just feeling crappy.  Sorry girl!  I pray for you and for all the other ladies whose cancer makes them feel crappy.  It sucks.

I also think we need to do a lot more research on the difference between those who live with metastatic BC for years and years and years versus those who don’t.  What is that about??  Is there a recipe we can use?  Has anyone figured out what those long-term survivors did differently?  Or is it all just luck?

Well lately, I’ve been feeling like one lucky gal.

Peace.  – T

 

 

 

Peace Within

I am feeling good.  Just enjoyed a beautiful day with the family & Auntie Cole and her man.  And I’m not feeling sick or in pain.

Now I’m just praying my blood counts will be high enough to do chemo tomorrow.

Thinking tonight about how fortunate I am to be in a position to pass on the love that has been given to me.  Although I originally set up this blog to keep my loved ones informed about my day-to-day life dealing with breast cancer, it has now become so much more than that.  I recognize the power of words.  And the opportunity I have to use my situation to help others (as so many other cancer survivors continue to do!)

I want to share a beautiful passage that I tore out of an old Oprah magazine to post on my visualization board.  I read it each time I meditate.  It encapsulates so much of what helps me get through each day.

May today there be peace within.

May you trust God (or Buddha/or the Universe/or whomever) that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith.

May you use those gifts that you have received, and pass on the love that has been given to you.

May you be content knowing you are a child of God.

Let this presence settle into your bones and allow your soul the freedom to sing, dance, praise and love.

It is there for each and every one of us.