Wildflowers

Long time no write…life swallowed me up for a few weeks.  But I’m back.

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You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worries
You belong somewhere you feel free

Tom Petty’s music stands as a pillar of my young adulthood. This particular verse is from one of my favorite Petty songs and shines as a beacon for the magic of music.  I’ve seen him a few times in concert with my family and those memories of singing the lyrics at the top of our lungs, playing air guitar, and sweating our butts off at outdoor venues represent some of the best times I can remember.  Petty left us way too soon.

But when I think about those times, and so many others, I can’t help wishing that I could just feel free.  Free from pain, from constant fatigue, from nausea, from stress–from cancer.  I wish I felt free from all the thoughts that swirl in my head every day.  And though I have learned to sort through those haunting, daunting thoughts, they still manage to slam like steel bars against my brain.  I’m trapped.  I fight every day for my life.  I fight for my kids.  But sometimes I feel like I’m in a prison banging on the door and no one can help me.

The happiest times in my life these days are most often the saddest times because I’m reminded that in no uncertain terms I don’t have unlimited opportunities to make those memories.  It’s why I spend every minute I have with my family and friends.  Although it’s not quite in the crisis mode it was a few years ago, I’m still trying to cram in all the memories I can as fast as I can.  I’m in mach 5 speed on the regular.

The metastatic cancer cycle is different.  We don’t have that celebratory moment of being free from disease.  Metastatic breast cancer isn’t sexy.  Pink October comes and goes every year.  Shops have sales for breast cancer awareness month.  Football players wear pink shoes. It’s one big sea of pink.  Listen, don’t misunderstand me:  while I am grateful for awareness and subsequently any dollars designated for cancer research, it simply cannot go unnoticed that only a small portion of funds raised in October goes towards metastatic cancer research.   The majority of organizations doing fundraising are focused on honoring survivors and racing closer to a cure.  But my Mets sisters and I don’t get wrapped in that pink ribbon.  We are not curable.  We’re on the outside of those survivor testimonials.  We don’t fit into the campaign.  It’s that reality that confines me to my cancer prison.

I know I have a rich life.  It’s the norm for me to laugh so hard that I cry.  I am not so sick that I can’t enjoy time with my squad.  But I’ll never be free on this earth.  So I work really hard to make every day count.

And someday I’ll fly free among the Wildflowers.

Scanxiety

I live my life in 3 month increments.

Every 120 day cycle heralds what could be the difference between life as I currently know it or a sudden explosion of fire alarms, med changes and new side effects.  Four times a year I receive a CT scan to determine if there is any disease growth–changes in current tumors or evidence of new tumors.  This requires me to prep for 2 hours before the procedure by fasting and drinking one of a variety of barium cocktails with flavor names like Mochachino–I mean, is that even a word??  It tastes just like it sounds.  Gross.

The scan itself is short.  The prelude and postlude are long and torturous.  All of the same worries and fears come rushing back and I’m never sure if my oncologist will celebrate or panic.   I spend those hours reeling with all the feels– I’m positive, brave, cautious, upbeat, scared, anxious, hopeful and any other cancer-fighting cliche you can think of.  I’m a one woman emotional show.

My medical team and I are in uncharted waters these days.  See, when everything got real back in September of 2015, my onco told me that once cancer spreads to soft tissue organs (like that fall when it showed up in the lining of my heart), on average patients have 6 months to live.  Um, excuse me?

So when those 6 months came and went with no change, a tiny piece of fear was pushed to the side.  Then another scan came and went.  And another.  Before I knew it I was 2 years out from that terrible statistic of 6 months.  I celebrated Halloween twice.  Christmas twice.  Two of my kids’ birthdays. My own 40th birthday.  The only thing we cared about was stability in those scans.  When they continued to come back with no new growth, I started feeling like Rocky, standing at the top of those stairs, fists clenched high above my head. IDK, maybe there had been a mistake and I didn’t have cancer.

Turns out no mistake, but I am definitely bucking the stats.

I have my next scan in 4 weeks and I’m already feeling those emotions bubbling up.  It’s like the further I get from that ugly prognosis, the scarier it gets because I should be dead.  I still pause and take a breath every time I plan for the future.  Talking about anything that’s more than a few months away is terrifying.  When I plan for things to come, I liken it to walking out on a ledge.  Each step is a little more borrowed life.

There are days I’d like to stay in a bubble where time stands still.  But since I know that’s impossible, I live.  It’s hard.  A simple 8 minute scan bookends a time frame in which I can either hide under the covers or make plans to go to the beach.  It’s my choice.  But sometimes it feels like an impossible choice.

All I can do is channel all that good juju that my squad sends regularly and hope my body continues to respond positively to the chemo treatment regiment I currently receive.  But when I see my doc’s number come up on my phone a few days after each scan, my heart still skips a beat and, for a moment, I’m lost in panic.  Bubble or beach?

And then, fists clenched above my head, I’m off for another 3 months.

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Can I get a value please?

 

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If you’re like me, we tend to question every decision we make as parents.

“Is this the right thing to do?”

“Was I too harsh?”

“I hope my kid isn’t going to end up on the Dr. Phil show one day.”  Okay maybe this one is just me.

IMO, our primary job is to keep our minis alive.  Teaching them good values like kindness, empathy and responsibility are the icing between those millions of layers of child rearing.  For me, the value part is the most rewarding in this whole process.  It feels so good to know that I have the ability (and responsibility) to impart values to my children in order to mold them into high functioning adults in society.

My 7 year old guy and I recently had a day-date to Michaels (my kids revere this store much like they do an amusement park!).  He had done some chores so naturally had a few bucks scorching a hole in his pocket.  Upon arrival to the crafting superstore, he began the ritual of bargaining.  “Mom, if I spend my $5, can you spot me $1 so I can get this [toy]”?

I thought about it.  Most times, I’m amenable to the “spotting” tactic.  I like that he has earned the money himself doing the corresponding chores, so typically I will toss an extra dollar in the pool.  This time, I said no though.  He was eyeing up a toy that undoubtedly would get lots of play that afternoon and then end up in the playroom graveyard of organized bins (albeit cute bins, one even with his name on it!).

I mentioned going over to the book section and on the way, my eyes caught up with a lady standing in the aisle.  She smiled at me and in a low voice said, “He is so cute.  You should be proud.”

I smiled back and humbly said, “I am.”

The whole interaction lasted 30 seconds but got me thinking for much longer.  In this world of technology and instant gratification, it’s no wonder kids are drawn to the items they see on TV (yesssss, even if you only give them one hour of screen time a day).  The system of earning, saving, anticipation and the delayed gratification after saving to get something, is a lost art.  In a small way that day in Michaels, I imparted some wisdom in that 7-year old brain.  He got it–even if only for a few minutes.

That guy took out his wallet, counted out the money (always surprised when the sales tax is revealed), slapped it on the counter and beamed as he walked out with a word search booklet and a beach paddle ball set.  I explained these are both things that you can get a lot more use out of.  He had a dollar and some change left over.

This is why we’re here, parents!  This is a prime example of why we’re on this planet.  My kids have a chore chart.  Some chores are assigned.  Some are elective.  Everything is given a value and they know how much I’m willing to pay for each.  This allows them the freedom and autonomy to organize and plan in order to save for their next purchase.

My son has been carrying that book around for days.  He steals any minute he can to search for a word.  Mission accomplished. Today anyway.

Connor Word Search

 

Dad lets us do it…and that’s okay

 

Man, parenting is hard.  Doing it by yourself is pretty much like standing in front of a firing squad All.The.Time.  No buffer.  Just you.  Alone with your every decision.  I don’t have the luxury of man-to-man defense.  These girl shoulders are the only ones carrying it all.

Truth is, I didn’t get married thinking I would ever get divorced.  And I certainly didn’t have babies thinking that I wouldn’t be part of a “traditional” family.  But after 10 years in a crummy marriage, I realized life wasn’t sustainable on that trajectory.  I was so consumed with trying to fix the relationship.  We met young.  We married young.  We had everything figured out fast.  We both had well paying jobs right out of college.  We bought cars and a house.  For twenty somethings, we were really slaying at life.

But then slowly things started to change.  He courted me as a 19 year old college girl from small town Pennsy.  He took me to fancy restaurants, Broadway shows, bought me expensive jewelry and didn’t let me make a single decision.  I never opened a piece of mail.  He paid every bill.  He made every meal.  We couldn’t even get take out because it wouldn’t be hot enough when it arrived to our home (insert eye roll).

I always wanted kids–we even discussed it on our first date.  But it was never the right time for him.  We never had it all figured out…enough.  So in order to start a family, I was tasked to find a bigger home so there would be room for our new addition.  I did.  I did all the legwork to find a beautiful 3 bedroom town home.  After several failed (sabotaged) attempts–and I mean like sitting at the settlement table twice failed attempts–we finally bought our baby-suitable home.  But just like that, we still weren’t ready.  It took another 2 years before our daughter was born.  And another 3 1/2 after that before our son joined us.  The wheels were off.  He was never home–always working to make money since we had 2 kids.  I found us in a place I could have never imagined.

We had grown up together.  The problem was: I grew up, he stayed still.  I found myself constantly trying to breathe life into someone who was determined that the universe and society was trying to keep him from succeeding.  He started complaining about coming with me to family gatherings.  He had to work.  I was also working full time and even took a higher paying job with a promotion in order to contribute to the family.  I was sure that if I could add more to our bottom line, I could get my marriage back.  But it was never going to be enough.

Our baby boy was just about 2 when I moved out.  I was just simply exhausted with all the fighting.  I had suddenly become part of the conspiracy against him.  That was 2012.  I suspected the narcissist I married and subsequently left, would obviously be angry with me.  I grossly underestimated the level at which he would continue to torture me about every single minuscule thing he could conjure up.

It’s been 6 years now.  The landscape of my life looks nothing like it did back then.  I’m grown up now with grown up stuff going on.  I’m in the midst of living with cancer, not working a full time job, and raising 2 babies virtually alone.

Sure he sees them during the week.  But that time unfortunately is not spent getting to know our kids and being open to working together on raising them.  I’m in a world where “but dad says it’s okay”.  And that’s just fine with me.

I’ve got my own family now.  The 3 of us do everything together.  When my son looks out into the crowd at his basketball game, I’m there.  When my daughter peeks out from behind the curtain at her dance recital, I’m there.  We cook together.  We get in heated games of Monopoly together.  We talk in our favorite movie quotes together.  All the time.  Mom is the one who gets all the hard stuff.  Dad gets the trip to the toy store as a reward for good report cards.  That’s cool. I wouldn’t change it for anything.

And I keep my own house.  I can actually do anything I want to.  If I want to leave the dishes from my take out in the sink for a few days because I don’t feel like moving them the 15 inches into the dishwasher, I can.  It’s not the picture I could have ever imagined painting for myself, but I love it.  I’m happy.  I’m raising 2 awesome kids.  I’m proud of the life I’ve built for us.  It’s our family life.

And I even open my own mail now.

 

The Unwelcome Journey…

Okay, so I’m welcoming myself to the world of blogging, for a bunch of reasons.  I’ve been on a “journey” for a while (I’ve always hated the word–it feels so cliche).   I’m a mom living with metastatic cancer trying to do all the “mom” stuff with this shadow on my shoulder reminding me about my mortality.  It became apparent over the last few months the feelings that I’ve been struggling to identify are those of purpose–searching for it.  I have my beautiful children who are such a source of purpose in my life.  But I want a little more. Enter my new blog.

Although I’ve been in the workforce since age 15, I’ve recently found myself unable to continue at my job outside the home.  Sad in a way, but admittedly loving all the perks of a stay-at-home.

So here’s the scoop: I’m approaching a milestone in #cancerland of 5 years post diagnosis.  A lot has happened over those 60 months.  It finally feels like it’s time to for me to talk/write about it and in doing so, treat myself to a little catharsis and maybe help someone else out there grappling with it all too.  It’s been 5 years to the month since I sat in a room with my brother and sister staring with disbelief at a doctor who just continued to apologize for having to present me with life altering news: you have cancer and need to undergo chemotherapy.  He handed me a pamphlet on breast cancer and sent us on our way.  It took about 8 minutes of shock before my siblings and I started making jokes.  Typical.

I’m a 40 year old single mom who in the Spring of 2013 was diagnosed with Inflammatory Breast Cancer, one of the biggest cancer bullies out there.  I started chemo (all the good ones like Adriamycin, Cytoxan and Taxol).  That was followed by a mastectomy, radiation and then a hormonal treatment plan which carried me for 10 months.  Then metastatic became a new word in my vocabulary.  I had a port placed in my chest in order to administer chemotherapy.  It got infected and had to be removed, awesome.  So I had a PICC line for treatment.  I lost my hair.  My body changed.  Those first months and years were a lonely existence.  I didn’t know what to do except keep turning the calendar pages.  I was in a sort of cancer daze—trying to work at my job, deal with an unrelenting ex, take care of my kids and gain perspective every day on what really matters.  Helloooo, pressure.

So with all that, I know a few things for sure: no one has a squad of the best family and friends like I do.  I can’t help finding the funny in just about everything.  And as a girl from central Pennsylvania with a degree in journalism, writing has always been a go-to for me.  So here’s hoping I can find my way in this new endeavor.  TIA for all the support.

xoxo

Tell us a story

“Hey mom, tell us a story…”

These are words I hear from my 11 year old daughter and 7 year old son several times a week. They never tire of hearing tales about my sister’s hilarious sleepwalking antics when she was a little girl. Or of the time my brother cranked the family car into gear and “drove” it into a street sign. They laugh every time as if they were hearing the stories for the first time. They can’t get enough of hearing about their family and all the mischief we got into and the stuff we pulled when we were kids.

For me though, it’s the giggles I can’t get enough of. I want to bottle that sound up so I can hear it anytime. Because for a 40 year old single mother with metastatic breast cancer, it’s unlikely I’m going to be around to soak up enough of those guffaws that a lifetimes deserves.

Thankfully, I’m in an area of stability with my illness. I’m on the part of the cancer ride where people say “but you don’t look sick.” I don’t wear a wig—despite chemo treatments every few weeks. I’m not frail. I’m not burned from radiation.

But the truth is: I’m nauseas and tired the week of treatment. I had to leave my job because I couldn’t keep up. I deliberately go hard on the weekend knowing that Monday and Tuesday will be spent under my covers. My stamina is low. My body keeps betraying me.

I basically operate on energy reserve. It’s a give and take between family gatherings, birthday parties, field trips, basketball games, dance recitals and then daily living. It is laundry, packing lunches, grocery shopping, cooking…attempting to keep the process as “normal” as possible for all of us. Cancer mom is our reality. I wish it wasn’t. But it is.

Some days are pretty haunting when that thought of not being here for my kids creeps up and I don’t have the energy to chase it away. So I let it stay. Those are the empty days—except for the tears.

But I’m determined not to dwell for too long on those days. The kids keep it so real for me, forcing me to live in the moment with them. It’s like we’re filming our own home movie. It’s woven with laughter and all the stories that I’m determined to tell again and again.

They don’t know it, but we’re counting on each other to preserve those memories in a sort of soundtrack of life that they can replay anytime. Today’s memories are their tomorrow’s stories.

So as long as you ask darlings, I will continue to tell. And I’ll hold so tightly onto the giggles.