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

Parental Lessons on Life

Miss M in full on angry mode!

Miss M in full on angry mode!

Parenting is one of the most difficult endeavors I have ever taken on.  Nothing tests your patience more than an angry, screaming child.

Since returning from my most recent trip to NY this week Miss M has been a hot angry mess.  I’m guessing the timing of these two events is not a coincidence.  My continued absence this week for medical appointments has Miss M clinging to me real tight and doing a lot of screaming.

Fortunately, we are having great success with Miss M’s new social worker therapist.  Miss M is opening up more and more each time.  She is sharing her anger and fears about mommy’s cancer.  Using little stuffed animals to work through her frustrations.  Asking questions.  Expressing her opinions.  The sessions are informative and reassuring for me too.  I’m receiving confirmation to do what I know is best for Miss M.  I’m learning new parenting tools, receiving support in my struggle to be a good parent through cancer, and understanding more and more about what’s going on in Miss M’s precious little head.

The picture of Miss M above was taken yesterday.  It was “one of those days”…  We had plans to go see the Dayton Ballet perform the Nutcracker…  But things did not go quite according to plan.

First there was her hysterical fit about putting on her shoes &  jacket…  Which led to us being late for the ballet…  Which forced us to sit in the “late” seats all the way in the back until intermission when they would allow us to sit in the seats we paid for…  Of course Miss M couldn’t see from these new “late” seats and made her frustration known…  Which led us out of the theatre…  Where she ended up in a pile on the floor, endlessly screaming and crying (much to everyone else’s horror and amusement)…  Finally, we decided to just go home…

What I had hoped and expected to be a beautiful festive family day, ended up being a day from hell.  And I couldn’t seem to shake the bad energy off me.  I carried it with me the rest of the day.

Then last night, watching an episode of Up All Night that I had DVR’ed finally gave me some perspective.  Reminded me that days like this do happen.  Life does not always go according to plan.  Finding the humour in these moments is key.  Laugh.  Recognize the futility of expectations.  Remember that we do not have control.  Take a deep breath and just go with the flow and let life unfold.

And always remember that tomorrow is a new day.

So today I consciously made an effort to start fresh.  I sipped my morning coffee from my favourite “Serenity” mug (the same one my mom used to drink from each morning)…  I met Miss M where she was at (a valuable skill I learned in social work school) instead of imposing my own expectations or preferences on her…  I paid attention to her…  We laughed and played together…  And aside from one minor incident over some M&M’s this morning we’ve had a pretty awesome day so far.

I realize every day offers an opportunity to start fresh.  To let go of the past and welcome each new moment.  Do things differently.  Make better choices.

It’s been one year since I was diagnosed with metastatic breast cancer.  I am so grateful to still be here.  To be feeling well.  To have the opportunity to celebrate another holiday season with those I love.  To live another day.

Wishing everyone a fantastic holiday – filled with serenity, beauty, love…  And fresh starts :-)

Peace.  – T

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Parenting Thanks

A quick thank you to everyone who chimed in with their 2 cents.  I found all your responses so helpful and comforting.

Miss M is still flipping out and she’s still upset more hours in the day than not.  But I am feeling bolstered by the new ideas and avenues you all suggested for us to explore.

I’ve struggled with not knowing how much to tell her.  (She is, after all, only 3 years old).  But after reading about all your experiences, I feel that it’s ok to be honest with her (in 3 year old terms of course).  Because the reality is that I can’t hide this from her.  So why not keep it real?  Let her know what is happening and what she can expect.  Let her know that I love her dearly and always will.  Let her know that it’s ok to be mad…  and sad…  and frustrated…

And I will continue to do my best to create a firm and loving holding environment for her.  To set limits.  To continue with our daily routines.  And surround her with people who care and love her unconditionally.

Lisa Marie – I love the Neufeld Institute site you forwarded to me and may call the lady in North Vancouver for some over-the-phone coaching.  Their approach seems very much in line with my leanings towards attachment parenting.

Trisha – We need to get together soon so we can catch-up on our cancer journeys, parenting, and life.  We are 2 tough mamas and we are gonna get through this.

Mark, Elenore, Gwyneth, Jewel, & Joelyne – Thank you for sharing your personal stories with me about navigating the ups & downs of living in a household with family illness.  I’m touched by your candor and willingness to open up.

Rhonda Lea – Your words broke my heart.  I’m so sorry you did not receive the reassurance you needed.  After reading your comment I made it a point to tell Miss M last night that she was in no way responsible for me having cancer and that nothing she says or does would make me sick.  This elicited a big smile from her.  Thank you.

And Lois – I couldn’t agree more with your dad’s wisdom:  “When they are the most unlovable is when they need the most love”.  I will try to remember this when Miss M is at her worst & I’m at my whits end.

This is an ongoing battle.  We’re all still adjusting to our new “normal”.  But I have faith that we will make it through.  In large part due to the beautiful support and guidance from all of you.

Lots of love.  – T

How Do You Parent Through Cancer?

Hubby, Miss M, and I at the Hope Lodge in NYC for our first visit together – 1 week post surgery.
Photo credit: Eryka Peskin

Miss M is a hot mess these days.  She is angry.  She is acting out.  She is fussier than I’ve ever seen her.  She is yelling & screaming.  She is throwing things.  She is glued to my side.  She is constantly crying.  She is going through a lot.

Hubby and I naturally assume the acting out is related to my absence while I was getting surgery (we were apart for almost 10 days – I know, it doesn’t seem like much – but when you’re a stay-at-home-mom who is with your kid 24/7 even a few days can seem like forever).  She knows I was at the doctor while I was away from her.  She knows that I have some serious “boo boos”.

The few times she’s been able to articulate why she’s so mad she’s said, “Because mommy goes to the doctor a lot”.  It just breaks my heart.

And we really don’t know what to do.  I know I’m not supposed to burden her with my problems.  My illness.  My pain.  But even if I don’t talk about it she knows.  She senses what I’m going through.  She sees that I’m not the same person I was a month ago.  Miss M and I have spent practically every moment together since she was a baby.  Our connection runs deep.  And there is no way I can pretend that everything is normal – because it’s not.

The evening of our first reunion post-surgery ended with her in hysterics when she found out I wasn’t staying with them at cousin J’s that night.  The next day, she demanded that I sit beside her for the entire 10 hour drive back to Ohio.  And since we got back, she’s been glued to my side – looking for extra hugs, asking me to hold her, wanting lots of cuddle time.  She’s been fussy with her friends.  Each time I tell her I can’t do something I used to (like picking her up or holding her tight to my chest) she freaks out, starts crying, and runs away to hide.  Tonight she refused to sleep in her bed and demanded to sleep in our room (something she hasn’t done in ages).

What’s a mom to do??  If I give in to her every demand, am I spoiling her?  But with everything that she’s been through doesn’t she deserve a little spoiling?  A little extra attention?  A little extra love?

We are actively looking for a good child psychologist in the Dayton area that she can go to for play therapy.  Hubby and I – and even my dad (who is staying with us to help during my recovery) – are all at a loss for what to do.  Last time I put the word out on my blog about seeking a good therapist for myself you guys came through with some great recommendations.  If anyone has thoughts on how, or who, can help Miss M please let me know.

And I would love to hear from other moms who parented young children while fighting a chronic illness.  How did you make it through?  What helped?  How are your kids now?

In the end, I know we’ll make it through this somehow.  It just seems like a never ending journey sometimes.  I’m so sick of cancer taking away my ability to be the fully engaged, energetic, & active mom I used to be.  We keep telling Miss M that mommy’s gonna get better soon.  But really, when will that be?  It feels like every time I’m done one piece of the treatment puzzle, there’s another piece right behind waiting to fuck with my life.  I’m so sick of it already!!!!

I think I need to go eat a cookie.  :-)

Tomorrow is another day.  Peace.  – T

Contemplating Motherhood

The miracle of my birth. October 25, 1974.

Ok, I have to come clean.  There is a new Procter & Gamble commercial that makes me cry EVERY time I watch it.  It’s about being a mom.  The tag line is, “The hardest job in the world, is the best job in the world.  Thank you mom.”  And it just captures the pure love, pride, and endless devotion that moms all over the world give to their kids.

Check out the long 2 minute version on the P&G youtube page.

As moms, our days are often filled with endless tasks…  We put our children’s needs above our own…  We tirelessly take care of all the details…  We are our children’s #1 cheerleaders…  We are devoted and strong.  Often times, a lot of what we do goes unnoticed.  There are plenty of days when I feel all my hard work goes unappreciated.  But then there are moments when Miss M cuddles up with me and says, “I love you mommy” or offers to kiss my booboos or gives me that special look that she gives to no one else but me…  And you remember what it’s all about.

Being a mom is often super emotional for me because I don’t have my own mother to turn to anymore.  Every time I have a special moment or adventure with Miss M it makes me think of my mom and all the special adventures we had together. Overnights to funky little B&B’s across Nova Scotia…  Dancing together at family functions…  Traveling to different places…  Seeing new things…  As a daughter – and an only child – my relationship with my mom was especially close.  We had an almost spiritual connection.  An intuitive knowing.  An unbreakable bond.

While I’m thankful for the 36 years we had together, I would have loved to have more.  I still can’t believe she’s gone.

And this is why I must continue my fight.  For Miss M.  And for my mom.

I won’t let cancer take me away from Miss M the same way it took my mom away from me.  I cannot give up.  I cannot let down my guard.  I must do everything in my power to stay on this earth as long as I can – to watch Miss M grow up…  To guide her…  Cheer her on…  Love her unconditionally.

Make sure your mom knows how much you love her and how you appreciate all that she does.  Treasure the moments you have together.  Do it now.  Don’t wait.

Peace.  – T

On one of our mother-daughter adventures (1984)

Meeting Life’s Challenges

Yes, I was able to have my chemo this week.  My white blood count was at 4,500 (not the supreme ideal of 9,600 that it was a few weeks ago…  But good enough).

It was a LONG ass day (for a bunch of reasons) and I ended up being there from 10:30am till 4:30pm.  Pretty much the whole day.  And of course it was the one time I didn’t pack a lunch so I subsisted on fruit, almonds, and some free peanut butter crackers they had on hand (that were not on my approved diet list – but at that point I really didn’t care).

I did have my monthly Zometa medication (the one that strengthens my bones).  Last month it left me shivering and shaking uncontrollably for hours on end.  We were expecting a repeat performance last night…  but thankfully it did not appear.  I’ve heard from other breast cancer warriors who had Zometa that the same thing happened to them – The first time was the hardest and then it subsequently got much easier.

Today I am week.  I am tired.  But feeling ok.

I am noticing the toughest thing for me to do is be a good parent to Miss M.

Everything else – no problem…  Dinner – i got that.  Dishes – i can handle.  Exercise – i can still do it.  But dealing with Miss M and all her toddler tantrums and defiance…  God, that takes a lot of energy.  To enforce the rules.  To be consistent.  To come up with creative ways to get her to do what I want her to do.  To beat her at her own game.  You have to be so on the ball.  And I am just not these days.

I am super thankful for my visitors (many of whom are also moms) that give me tips and show me new ways of parenting.  I am thankful for their energy – when I have none.  I am thankful for their ideas – when my chemo brain robs me of my own.  I am thankful for their guidance – because my own mother is no longer here to offer it.

This week my childhood friend “Auntie A” is here with her 3 year old daughter.  It’s beautiful having them here.  Auntie A is an amazing parent, full of energy, and totally devoted to being a great mom.  She’s wonderful with Miss M.  And I am learning a lot from her.

And after a week without ‘in home’ help I am thoroughly grateful to have someone here who can help me get everything done – all while exchanging parenting woes and catching up on the mysteries of life.

I know now that I need to get myself some permanent help around the house.  But it’s so difficult.  Because I feel like I am losing my ability to be a really good parent.  And I don’t know what to do about it.  It hurts me to think that I have to hire someone to do the number one most important thing to me – parent my daughter.  I hate the cancer for that.  For robbing me of my ability to be the kick-ass mom I used to be.

Throughout all the turmoil of the last few years – my mom’s passing, the endless moves, new people, new situations – I have been Miss M’s only constant.  Her rock.  And now I am coming apart at the seems.  How does this not impact her?  How do you process all these major life changes with a toddler?

Aaahhhh….  Life’s challenges.  They’re never ending.  And the answers are not always immediately visible or available.  I guess the key is to not give up.  To keep searching.  Keep pushing forward.  And then just hope for the best.

Peace.  – T