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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Tsunami

Guest post by my sister Rebecca…

I wasn’t sure that I would ever be able to write this.  It’s been five years and, frankly, I’m still not sure.

Cancer came into our lives like a tsunami.  No one expected it.  But then one day, there we were in a doctor’s office looking out over a field of half-dead brown grass, listening to a doctor apologize to Rachel (and me maybe? Unclear.  He was a very weird dude.) and then diagnose her with inflammatory breast cancer.  I remember sitting very still, my tongue pressed to the back of  my teeth, holding my breath, as the flow of time seemed to warp  and bend around the room like some kind of new quantum reality; an infinite dizzying pause.

We were the villagers on the shore watching as the water began to slowly recede and a giant wave took shape on the horizon.  Something terrible was coming and it was happening in a blur but also in the most excruciating slow motion.  In the days and weeks that followed, the wave got bigger and stronger with edges that were more clearly defined and more terrifying than we could have imagined.  When it finally crashed down and our lives became engulfed in chemo treatments, Mediport placement (and removal), wound packing, dressing changing, Picc line flushing and the million other chores cancer demands of you, I was sure I would drown.  I almost wanted to.

My brain had no framework for imagining a life without my sister.  I have never lived in a world without her and hadn’t ever entertained the notion that I would have to.  We grew up in a large family– Rachel is the oldest of six and I am four and a half years behind her.  Our parents divorced soon after I was born, each subsequently re-married and had two more kids.  My sister was my constant during a childhood that was often confusing and sometimes chaotic.  We didn’t always like each other, but we were allies in the subtle struggle of navigating the space between two families.  And now, faced with the possibility of losing the only person who knew what that was like, it felt like my brain was shutting down.  The cancer deluge had invaded every facet of my life, seeped into every crevice, under my skin, in my eyes and mouth and lungs.  I couldn’t breath, let alone figure out which end was up and swim to the surface.

I’m not sure how long I lived under that wave.  A year? Two years?  The as-of-yet undiscovered laws that govern the quantum time warp phenomenon were still in effect.  Everything existed only in the present.  The past was irrelevant, the future too terrifyingly nebulous to consider.

I forgot how to interact with my friends as they continued with their normal lives and I spent nights sleeping on hospital chairs learning the intricacies of pharmaceutical pain management.  There were some decidedly dark moments.  My sister has an irreverently irrepressible sense of humor though, and quickly invented a lexicon of cancer jokes, much to the disapproval of the majority of  medical personnel we encountered who, for some reason, were largely unamused by our banter.  I had no idea what I was doing or how I was supposed to be in this new world.  I felt desperately sad, inconsolably enraged, overwhelmed, confused and lonely.  And right next to all of that was a sharp gratitude for every moment I spent with my sister and my family.  After a while I could start to see a light somewhere above me and the blurry shapes of things that existed beyond the reach of cancer.

The wave has not receded.  There are still dark moments.  But there is also light, and I am learning how to swim.

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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.

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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.