The Spring of My Discontent

While I’ve never understood Shakespeare, he did have some awesome quotes.  Unfortunately, I just tend to paraphrase them to suit my own selfish needs which is probably why I got a “D” in Shakespeare in college (and why I changed majors, but that’s for another blog).  While spring typically brings a sense of new purpose and revival, I find myself wondering if I lost the memo telling me what I’m supposed to do next.

Last year I was blissfully awaiting those first tiny spikes of hair to sprout from my head like little blades of grass ready to burst forth from the sod left dormant by winter’s cold.  I was ready to actually go someplace and not have to be afraid of getting sick or needing my nausea meds. I felt like I was reawakening, just like the world after its winter sleep.

Well, I’m still waiting to wake up.  Apparently this is normal.  No wait, it’s the “new normal.  These are two words that should never, ever be put together to make a reasonable phrase.  Normal is normal so how can it be new?  I didn’t order a new normal.  I want my old normal.  My old normal, while maybe not the most exciting, was good.  I could walk for a reasonable period of time, keep up with my children and lose weight without too much trouble.  I remembered things, tackled new projects with gusto and was one ambitious woman.

Now, not so much.  Numb feet and hands, electric shocks jolting me, achy body, chemo brain, and a whole host of other things that are just too boring to list now bog me down.  I want to be able to walk more than 3/4 mile without needing to ice my feet and live on Motrin for 48 hours.  I want to play with my kids.  I want to not be afraid of tackling a new writing project.  I’d like to sleep well more than a single night each week (sometimes I’m lucky and get two- whoo hoo!).  Let’s not talk about the weight.  Apparently, the trauma of chemotherapy makes your body actually want to keep extra weight just in case you decide to indulge in the toxic cocktail again.  Yea, like that’s on my list.  I just can’t seem to convince those chubby little cells that it’s okay to let go.  I’ve threatened them, screamed at them, pleaded with them, begged them, bribed them (which was, no doubt, counterproductive) and sweet-talked them; all to no avail.  Nothing budges and neither do I.

I have come to realize that I’m tired.  Not physically so much, although I just don’t have the stamina I used to.  Before my treatment, I felt like I was in my early 30’s.  Now, I have no trouble believing I will be 50 in just 4 short months.  Now I just feel old, worn out and beaten down.  I remember neighbors hanging rugs out when I was a kid and beating them.  Sometimes, you could see where people walked on them because they had thin spots.  I’m that rug.  I keep getting beaten and the dust is gone.  There’s some bare spots and I just don’t cover as well as I used to.  Humor is cutting it less and less.  My well is beyond tapped, it’s bone dry and digging deeper won’t help.  Things that used to bring me joy just don’t any longer.  I’m tired, so tired and just want to rest.

I find myself pleading with God to do something – anything – to help me get myself together.  I journal, I blog, I work, I homeschool, I cook, I run a soccer shuttle and try to be present for my sons and husband.  And while I can generally put on the face, it’s becoming more apparent that what I’m doing just isn’t cutting it.  When my husband continues to ask “What’s wrong with you?” it’s apparent that life is coming apart at the seams.

We are vacationing in July, something we all need.  It will be good to get away even if it means renting a cabin and I still have to keep up with the cooking and straightening up.  Truth be told, I’d love a week by myself but I’m fully aware that after 48 hours my ears would be missing the sweet sounds of “I didn’t do it” and my arms would miss prying one child off another.  During chemo, I found that what most found mundane was what kept me sane.  Ironically, it’s the mundane that might be driving me toward some insanity at this point.

I’m not sure which is worse – being discontented and not knowing it or being discontented and not knowing what to do about it.  If you don’t know your discontented, then you can point fingers everywhere else.  If you do know, the process of becoming undiscontented (?) becomes your responsibility.  Trouble is you don’t know how to wrestle with it so it eventually overtakes you until you just want to either make yourself so busy that you don’t have to deal with it or crawl under a rock until it goes away.

Life after cancer becomes a new normal.  I HATE the new normal.  I want my old normal.  The one that doesn’t involve being discontented, quarterly pelvic exams and lying on a CT table twice a year.  I want one that involves continuing to be blissfully unaware of the damage cancer does to a person on a physical, mental and emotional level.  Sometimes I hate being the one who “gets it,”  and  I want to be happily ignorant again.  But I wasn’t given that choice.  This is it and I need to deal with it.

Maybe the “new” normal involves a time of discontent and introspection.  Maybe it means redefining myself beyond my disease.  While I am very proud that I beat OVCA, it’s not who I am any more than I am only a wife or only a mom.  Maybe it means extending myself some of that grace I tell others to extend to themselves.  Maybe it means being selfish sometimes and going off on my own to recharge.  Working at home and homeschooling tend to keep me tied to a single place.  While it’s grounding, it’s also very confining.

I’m thinking it means taking a lesson from the butterfly.  The caterpillar only knows one normal, chowing on leaves.  Then suddenly it gets the urge to curl up in its own custom made sleep sac and take a much needed rest.  When it wakes up, it’s a new normal.  It used to crawl and chomp on leaves.  Now it has to fly and slurp up nectar.  Seriously, how much more radical can you get?

I hate adapting when it’s not on my terms.  So I live in my own spring of discontent.  Hopefully, the summer will be one of enlightenment.

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March Madness

I have a love/hate relationship with March.  The B man’s birthday is March 14th and is, of course, prime party time at the Giess household.  The fact that there are 3 other family birthdays in there just add to the festivities.  My mother-in-law’s is the 1st, my oldest niece’s is the 9th and my brother-in-law’s is the 29th.  It’s just one big party.  It’s also the time we start planning for our next homeschool year by working on schedules.  On the flip side, I begin to go into panic mode about what I may NOT get done in school.

I hate March because my oldest becomes OBSESSED with March madness.  I don’t like basketball to begin with so bracket madness just drives me up the wall.  Having a sports obsessed son is tough for a mom who believes the only sport worth spending any time on is football, although I love watching B to play soccer.  I also hate March because John and I both lost our dads in March.  It’s been 5 years for John and will be 8 for me at the end of the month.  It’s a tough time for both of us and makes us think about our own mortality.  We’ve both been mad at God, yet realize it was His love that took away their suffering.  My biggest hate has to do with my last chemo treatment, which was March 15, 2013.

Now, you would think that would be a reason to celebrate.  Woo-hoo – ditch the chemo and bring on the hair.  To some extent, that’s true.  However, it was my last chemo treatment that pushed my battered body over the edge.  It was the last treatment that gave me permanent neuropathy and pushed the bones into osteopenia.  It killed the last of the good brain cells.  It exhausted me.  And I’m still waiting for my body to decide to revert in some way, shape or form to its presurgical levels.

Tomorrow I have my one year CA-125 test, then I see the oncologist the next day.  I am one year into my two year quarterly dance with the oncologist.  For some reason, I feel a bit complacent this time.  It could be that I’m exhausted after an extremely busy weekend or maybe I’m just getting used to the ups and downs of the stress of OVCA.  Or maybe I’m just tired of waiting for the time bomb to go off.  If it wants to, it will and my spending one extra iota of effort on it will get me nowhere.

Tuesday will be the first time John has not attended an oncologist’s visit with me, which may indicate a touch of madness on my part.  I want to see if I can do this on my own. Since my CT was clear, I feel fairly confident that the CA-125 will be within normal ranges so I’ll just get the standard lecture about my weight and needing to exercise.  On the other hand, John is only 10 minutes from the oncologist’s office so if things go to crap he’s fairly close.  Methinks I may be growing up on this journey with cancer.

Last week our small group talked about going out of our comfort zone and what pushes you out of your comfort zone.  I realized that my comfort zone has increased considerably.  I’ve learned that going through cancer – or any life threatening illness – either makes you stronger or causes you to curl up in a ball.  Actually you tend to do both.  You may be strong, but have days when the ball looks really good.  Talking in front of a crowd? Piece of cake.  Going on TV to talk about international adoption?  No problem (seriously, I did this, but that’s for another blog post).  Join another co-op and teach writing?  Bring it on!

What has shifted is what makes up my comfort zone.  While I used to jump at every chance to write, now I’m more selective.  I am currently working on the new brochure for the Ovarian Cancer Alliance of Greater Cincinnati (aka Cincy Teal).  That’s a daunting task.  This brochure will touch many potential cancer patients or family members.  It’s tough to take the cold facts and make them not seem so daunting, even though they are.  How do I write about something so devastating without making it sound so hopeless?  I am also creating a second brochure for newly diagnosed patients called “Follow the Teal Brick Road” (without the Munchkins).  It’s designed to be a piece to give newly diagnosed women an idea of what the teal road is like.  When I think about that, that’s madness!  Who am I to tell another woman what her journey will be like?  There are some women, like those in Cincy Teal, who’ve hit OVCA head on, showed it to the door and now raise awareness.  I know there are others who just want to get as far away from it as they can and never want to hear another word.

When you find out you have any kind of cancer, your world is rocked.  OVCA just rocks it in a different way.  There aren’t many people (statistically speaking anyway) who face it every year so you tend to hear only the bad.  When you’re trying to put together a piece to bring some hope, that’s an incredible burden.  There’s so little support out there that you feel like the end is near so why bother.  Am I mad to think that I can bring a bit of understanding to someone who’s been told they have a potentially incurable disease?  The line about “If I can help just one person…” is terribly cliché, but maybe it works here.  Even if the woman who receives thinks “I’m not alone,” then I think, perhaps, the endeavor isn’t mad.

March madness takes a lot of forms, from basketball brackets to mourning lost fathers to facing up to a lifetime of cancer on my shoulder.  I am still mad that I got cancer and livid over how it affected my sons and family.  Yet, somehow, I have a peace that transcends the madness.  Yes, God is present through it all, but it goes beyond that.  For the time being I faced the Beast eye to eye and toe to toe and I won.  The win might be short lived, it might not, but it IS a win.  And with that in mind, I forge through the madness and work on facing what God and life have for me.

 

 

Lest I Forget

Yesterday I took my youngest to the pediatrician for some, shall we say, dietary issues.  Basically the boy burps and toots from sun up to sundown.  And while I could regale you with snippets from the conversation he had with his pediatrician, that’s not the reason for my post.  Okay, just one.  Dr. Debbie:  “Braeden, where does your tummy hurt?”  Braeden:  “Right here.” (pointing just below his stomach).  Dr. Debbie:  “Does it hurt when you burp?” Braeden:  “Nope!  It feels good.” (note the emphasis here).  Dr. Debbie:  “And you have to pass gas too?” (so politically correct).  Braeden: “Yes, I fart.”  Dr. Debbie: “Do they smell?” Braeden: “Yep, they’re stinky.”  Now, if you know my son, you should be rolling in the aisles because you can visualize his facial expressions.  For those of you who’ve never had the privilege of meeting Braeden, just use your imagination.

But I digress.  When Dr. Debbie (our pediatrician) walked in, she said “Wow, you’re hair’s getting really long.”  Now, I actually stopped to think why she would even comment on my hair.  It took a couple of minutes for it to actually dawn on me that the last time she’d seen me, I had just passed the stubble stage.  I’d actually managed to forget I had cancer.

So, for the first time in almost 14 months, I had freedom from cancer.  Well, not actual freedom, but close enough!  It was a bittersweet kind of thing.  It was good to be free from the obsession of cancer.  On the other hand, it scared me to think I wasn’t being diligent.  So, of course, I obsessed about it for the rest of the day.  Okay, I obsessed until the Opening Ceremony started at the Olympics.  Then I got to listen to my son obsess about his birth country.

At that point, I traded one obsession for another.  I used to obsess about being an adoptive mom.  When my oldest came home, it was all about all things Russian.  I had Russian toys, Russian CDs, Russian meds, Russian food.  My son, being the good little Russian boy he is, brought home Russian bacteria that was unfamiliar to American screenings and had a raging bladder infection.  Ten years later, we are still battling Russian bugs.  This time they are H.pylori bacteria that are causing an antibiotic resistant ulcer.  Nice to know he brought a bit of the old country with him.

I spent so much time worrying about being the mom of a child who was both adopted and from a foreign country.  I read books, joined support groups and pretty much obsessed about my ability to parent.  When my youngest joined the mix from Guatemala, I now had double the reason to obsess.  Of course, my youngest is the opposite of his brother, so that just added to my drama.  As you can see from the introductory paragraph, my youngest is quite a character.  His older brother is much more controlled (this is an understatement) and has a dry sense of humor.

Then there was the whole multi-racial thing.  Don’t even get me started.  Race is an issue, yes.  My son knows that some people treat him different just because of his skin color.  Fortunately, he lets it roll – most of the time.  Once I heard him say, “Don’t people realize I think they look strange?”  That’s my boy.  And that’s when I quit obsessing.

I have actually managed to move through the last few years “forgetting” they are adopted and not from the USA.  I guess I’ve moved beyond the labels.  People sometimes ask if I see my son’s skin color.  Of course I see it!  But I also see his infectious smile, massive cowlick and stubborn attitude toward school.  It’s just part of his package.

Once I passed over the adoption obsession, I moved onto the homeschool obsession.  Homeschoolers are, by nature, an unconventional bunch.  I obsessed about choosing the right curriculum, co-op, teaching style and extra-curricular activities.  We entered our 6th year of homeschooling this year.  I will say it took me almost 5 years to quit obsessing.  Now my biggest complaint is “Where did all the buses come from?” on Monday mornings as we try to get to co-op.  I “forget” that most people don’t homeschool, which seems REALLY odd to me. Now, I just roll with the punches, just like I do with being a parent.

So I guess it really shouldn’t surprise me that I forgot about my cancer.  I have a pattern of obsessing and forgetting.  I know that I never really forget.  I am cognizant of how my family was formed, that we don’t school the way most people do and that I am very fortunate to be here to blog about this.  I know all these things, I just don’t keep them in the forefront.  Of course, chemo fog helps with this on bad days.

I’m about a month away from my quarterly check-up so I know obsession is right around the corner.  I’ll be thinking about tumor markers and wonder if I will be able to keep the barium down until after the CT scan.  I will be in a major obsessive state until the doctor gives me the thumbs up or down.  His answer will help me decide which can of worms to open.

Oh, and lest I forget, thank you, dear reader, for your comments.  I AM putting my blog into book form.  This is not an easy process especially with chemo fog, homeschooling, freelance writing and my current obsession with “Candy Crush Saga.”  But I am working on it.  Rest assured, I won’t forget.

Ten Years of Life

It’s ironic that the snow is falling and it’s cold today.  I hesitate to use the term “bitterly” because I’ve been where it’s bitter cold and this, I’m afraid to tell you, isn’t.  Bitter cold is taking a breath in through your scarf and the cold still burns your lungs and freezes the mucous inside your nose.  It’s spitting and having it freeze before it hits the ground.  THAT is bitter cold.  This is just chilly.

It was in bitter cold that John and I made the trek 10 years ago today to a military style courthouse in Chita.  We sat in a cold hallway waiting for the translator to tell us it was time for our hearing.  The courtroom was even colder since it had tall windows along one wall that were thick with ice on the outside.  The judge strode in along with everyone else and began barking out the proceedings in Russian.

Now, when we landed in Moscow the first thing that struck me was that the Cold War was still going on.  The airport was painted in a cheery military gray and there were armed guards EVERYWHERE.  In the midst of this, VH1 was on and there stood Mick Jagger on an 8 foot high screen belting out “Brown Sugar.”  I still get a headache from the paradox.

Traveling to a foreign country is a unique experience.  Now imagine doing it with $20,000 in cash strapped to your body.  John and I had managed to split it up so we didn’t have to declare it coming into the country.  We still panicked through customs, especially since we were the last Americans off our plane, the last to have our passports and visas stamped and the last to figure out where the heck we had to go.  Finally we found our translator and she helped us get our luggage and explained the ground rules for the rest of our time in Moscow.

From Moscow to Chita, we were treated to an Aeroflot flight. Now, if you’ve never had the opportunity to fly on a post-Soviet era Aeroflot jet, DON’T.  Seriously, run away!  While standing on the runway with the couple we were traveling with to the region, the maintenance crew started tapping on the front landing gear with a screwdriver.  Now, I am in no way a mechanical person, but it seems counterintuitive to tap on metal and rubber in the cold with a sharp instrument.  My expertise is limited to watching Delta at the gate.  I never saw them do it, so I’m assuming it’s an Aeroflot thing.

We were assured our crew spoke English.  Yep, “Meat or Chicken?” “Water, no gas?” (Sparkling water is the drink of choice in Russia.  This is flat water like what comes from the tap) and “You okay?” were the sole words we heard.  Children were given potty chairs to use.  The little girl in front of me used hers twice during the 6 hour flight.  That was fun, especially since it was stored under her seat by my feet.  I dropped my chicken on the floor.  The plane’s bathroom was an experience.  I quit drinking immediately after I used it an hour into our six hour flight and began about an hour before we would land knowing I could probably hold it until I got to the terminal.  As I waited an man who obviously flew with a flask of vodka let me have it in Russian.  He had tried to ask me a question and my response was, “Sorry, English speaker.”  What a tirade.  Of course, I am one of the few people I know who can say they’ve been cussed out in Russian.

The landing was fun – if you like ceiling tiles falling out on your head connected only by shoestrings.  Yes, shoestrings.  The look on John’s face is etched permanently in my mind.  Normally, we are patient and will wait to exit the plane.  I have never seen my husband move so quickly to get our things and shove us off a plane.

Exiting the plane, that was an adventure.  Imagine walking onto another planet.  That’s what we did.  It was cold (-20F) and everyone is bundled up to their eyeballs.  You walk down the steps and onto the tarmac.  It’s 7AM but pitch black.  Only the lights of the terminal and the runway are visible.  There’s ice fog in the distance.  You are searching in vain for the one person you know speaks English.  Fortunately I am married to a very tall man and Katia (our host and translator) was able to spot John right away.  She led us inside and to a clean bathroom.  After waiting for over an hour for our luggage (yep, it happens in small airports too).

At this point, I am ready to chuck the entire trip.  When I landed in Moscow, which was my first time out of the country, I sobbed – for hours.  I wanted my Dad.  I wanted my bed.  I didn’t care why I had made the trip, I just wanted to go home.  Even though the staff at the hotel spoke English, I couldn’t read anything.  It was in Cyrillic. I had never felt so utterly alone.

Our arrival at Baby House #1 was surreal.  The outside of the orphanage looked like a gingerbread crazed designer had taken over the playground.  The playground was decorated in lollipops, gingerbread houses, sugar plums and anything else you can imagine, encased in a half foot of snow with a thick layer of ice on top.  My glasses were fogged up from the change in temperature. When we entered the building the blast of steam heat caused my glasses to steam up more then defrost.

As we were lead through the Soviet era building to the music room, we met the 3 year olds who had been practicing for their New Years concert.  Despite being cold, their little faces thawed all of us out.  Then the wait began.  This was why we had traveled half way around the world.  After 20 minutes, it was all worth it.  A baby boy with the most beautiful gray eyes and charming smile was placed in my arms.  Despite John’s comment that he had a big, pale head, I was in love.  This was the son God had promised me.  I felt like Sarah holding Isaac for the first time.  This was my child.

As I look over the last ten years, it’s been quite a ride.  Kyle has faced his fair share of struggles.  He has chronic gastritis caused by an antibiotic resistant ulcer as well as some other challenges that are a result of spending the first 5-1/2 months of his life in an institution with only his most basic needs being met (he remained in the baby hospital until there was room for him in the orphanage).  When he was transferred to Baby House #1 the head caretaker, Ludmila, made sure he was cuddled, sung to and loved until John and I got there.  I firmly believe that his intense love of music is a direct result of Ludmila singing to him every day.

Kyle has had to deal with more loss in his young life than most twenty-somethings have ever had to face.  He lost his family of origin and his caretakers before he was 8 months old.  He lost his beloved Papaw shortly before his 3rd birthday.  His Opi died before his 6th birthday.  Our family dog, who fiercely protected Kyle from the moment she met him, died in 2010.  Last year, he had to face the very real possibility that his mom might die.

My son is amazingly resilient.  I know he still fears losing me as much as I fear leaving him and his brother.  Next week, I see my oncologist for my quarterly appointment.  While he never says anything, you can see the subtle change in his eyes.  He is more willing to hug me.  He will actually sit by me on the couch.  He never talks about how scared he is, because he is trying to be strong for me.

This child, who I would willingly give my life for, has put himself in front of me being my anchor to this world.  In the little bit he has said, he firmly believes that we can beat cancer.  Not me, not my oncologist, but we.  He pushes me to be my best.  He reads labels for soy and artificial sweeteners.  He looks for opportunities to lay a teal ribbon.  He sends “hellos” to my chemo nurse, even though he’s never met her.  I always ask the boys if they have a message for my oncologist when I go to see him.  Kyle’s is always “Please keep my mom safe.”  Not cure my mom, not keep the cancer away necessarily.  Just keep her safe.  It’s as if he knows that someday I won’t be here, but for as long as he needs me, do your best to keep her here since I’m not ready to let her go yet.

So with tears streaming (yes, I do cry when I write these), I can hear my son flipping the pages of his beloved Sports Illustrated Kids. Occasionally he will spout off a statistic, but mostly I am hearing the sound of pages turning. While he can drive me nuts, as all kids can, I am so thankful that I have yet another year to celebrate the Forever Family that God blessed me with.  Please God, keep me healthy so I can see him and his amazing baby brother, grow into the strong young men you want them to be.

Happy Forever Family Day, Dma.  Know what whatever happens, your Momma loves you more than you will ever know.

Like the Leaves

While at co-op today, I had this sudden urge to get outside.  I’m not sure why. I just needed to get some air and enjoy fall before fades to winter.  I love to hear the crunch of the leaves under my feet and see the colors.  There is a beautiful half mile meditation trail on the church’s campus that winds through part of the woods on the property.  As soon as I got to the woods I felt a sense of peace.

About halfway through my walk, I was struck by two different trees.  One tree was still in a blaze of yellow, orange and red.  It was spectacular.  The tree next to it was covered with dried up brown leaves which were desperately clinging to the branches.  It was then I began to wonder what kind of leaf am I?

I am by no means in the winter of my life, but neither am I in spring.  I’m guessing I’m in that early September, still hot but the nights are beginning to cool off.  I am wondering, though, if I am like the first tree ablaze with glory or if I am like the second, just clinging onto what I can until I inevitably fall back into the throes of cancer.

I still feel fragile, like those leaves desperately clinging to the tree in hopes I won’t fall off to be crunched underfoot and swallowed by the inevitable snow.  Every ache and pain scare the crap out of me.  I hesitate to make any plans beyond a month or so.  What if I’m in chemo?  What if I have to have more surgery?  What if all my tests have been wrong and I’m not here?  The Beast has a tendency to worm its nefarious fingers into your psyche and won’t let go.  You almost have to physically go toe to toe with it and pry its clammy claws out of your heart and soul.  It’s a constant battle and some days you’re more ready for it than others.

I’ve spent the last year marking time.  Counting days until my hysterectomy. Counting days until I could go home from the hospital. Counting days between doctors’ appointments and procedures.  Counting days until chemo started,  then the days between treatments.  Then you count down the chemo treatments until you finally finish.  Everything revolves around a date.  When you’re done, you start marking time in ways that sound something like this.  “One year ago today, they found my tumor.”  Or, “One year ago today, I started chemo,” which was, in fact, this past Saturday.  Like obsessing about tumor marker numbers, you begin to obsess about dates and time.  It moves and stands still all at the same time.

In a way, I’m jealous of those brown leaves.  At some point, they will realize it’s okay to let go.  They will float gently in the wind and return back to the earth that gave them life.  I need to give myself permission to let go of the dates and the numbers.  I need to accept that ovarian cancer isn’t who I am, but it is a part of me.  I will always be a patient of my oncologist.  I will always have to be vigilant since no one does that for you.  And I will always be forced to try to beat back the Beast.  It makes itself known to me every day in numb fingers and feet, achy joints, and, on days like today, achy areas from the surgery. I hate all the drama that seems to come with being a survivor, yet it’s part of surviving.

So, I will choose to be dazzling –  as dazzling as a 49 year old woman with salt and pepper hair can be.  While I can, I will be a brilliant leaf showing my splendor. I still have work to do.  I have two children who need a Mom and a husband who needs a wife.  My mom still wants her daughter and I have a dear friend who was there for me during my chemo.  Now it’s my turn to be there for her.

I think God gives us fall to remind us that even when things are about to go down the toilet, which is how some people see winter (I fail to see why, it has it’s own special charm), there’s good and bad.  Spring’s arrival brings new birth and gives way to the mosquitoes and humidity of summer (you can see I am a heat wave hater), which turns to the colors of fall and the crystal blankets of winter.  Life isn’t a rotation through one set of seasons, it’s a continual cycle.  We all go through multiple springs, summers, autumns and winters.  It just depends on where we are.  Sometimes we spend more time in one season than another, but we do get to experience all of them.

I’m thinking it’s okay to be like the leaves, even the brown ones.  It’s time to let go of what happened last year and move on to what lies ahead.  The leaves are changing and so am I.

Reflections on a Year Gone By

As I write this I realize I was still in surgery one year ago today, blissfully unaware of what my oncologist was doing inside my body.  My husband and family were experiencing increasing anxiety since the surgery had gone on at least 90 minutes longer than they anticipated.  It would be at least 90 more minutes before John would be able to actually see me.  It would be at least an hour after that before I would be awake enough to know what was going on around me.  I still had a TPA injection, nuclear scan and admittance to ICU ahead of me.  To coin a phrase, this day sucked one year ago.

Today I did some of the things with my boys that I did on the day before my surgery last year.  We bought Braeden’s Halloween costume, then went to Barn and Bunk to buy our pumpkins.  Unlike last year when we had amazing weather, it poured down rain today.  After lunch at Max and Erma’s we headed home to watch Halloween specials we recorded.  Nothing major, nothing out of the ordinary unless you consider that the pulmonary embolism last year nearly killed me.  Now I love those ordinary moments.  We never know how many we have.

October 17, 2012 started a whirlwind I didn’t think I’d be able to escape.  I went from being totally out of it in ICU (those of you who visited me can attest to those 8 minute naps I took between hits on the pain pump) to walking the halls of the gyn floor.  I listened as my oncologist pulled the rug out from underneath me believing that if after 4 days I’d had no bad news, it must be good news.  “You have Stage 1C ovarian cancer.  I believe I got all of it.  You will need to undergo 6 rounds of chemotherapy as a precaution.  Here’s your report.  Let’s talk about it.”  It’s amazing that with the chemo fog I can still remember his words verbatim.

Three weeks later, with port inserted, I began chemo for what ended up being 7 rounds instead of 6.  I endured blood thinners that were injected into my abdomen, compression stockings, nausea, baldness, hot flashes, cold spells, constipation, headaches, ringing ears, blurry vision, neuropathy and a whole host of other symptoms that were supposed to be suppressed by a shoebox full of medications.  I still suffer from hot flashes (as a result of instant menopause from the hysterectomy), cold spells (from the anemia I had prior to the surgery that got worse with the chemo along with the Coumadin I take to thin my blood), constipation (chemo side effect, neuropathy of the large intestine), floaters in my eyes (thank you again, chemo), and neuropathy and joint pain in my hands and feet (kudos, chemo).  I can also add hernia to the list, but with a 12″ scar down my abdomen I shouldn’t be surprised.

I have spent the last few weeks wondering if I’ve been walking in a dream for the last year.  Then I check the mirror.  The salt and pepper hair and hysterectomy scar are the visual reminders I face every day.  The pain is a visceral reminder.  Every so often chemo fog kicks in and gives me a reprieve.  I can’t remember what I’d like to forget.  I really don’t remember much about chemo except that I was VERY sick and scared the crap out of everyone who saw me, except for Cathy.  She knew what to expect.  Chemo friends are like that.

I cleaned out my closet and room last week and packed up all my cancer hats.  They are in a box in my cedar chest waiting for me.  I got rid of my “sick” clothes I wore last year.  I just couldn’t stand to think about wearing them again.  I don’t like having my picture taken.  While my hair finally looks “normal” I’m not allowed to color it yet.  I look strange, old, tired, cancerous.  There’s something sad about the person in the mirror.  She lost a part of herself and gained a shadow that’s always lurking behind her.  I am waiting for the shadow to become commonplace so I can feel normal again.

I still don’t plan too far ahead.  The idea of having to tell my boys that we can’t do something because I’m sick again is more than I can handle.  I have made every soccer and flag football game so far this season.  I have bought Halloween candy.  I am working on losing excess weight to help me get healthy and help the hernia.  We’ve discussed visiting John’s family for Thanksgiving.  I see my doctor every 3 months.  I get my CT scan every 6 months.  Despite the 88-90% chance of being “cured,” it’s a long 10 year road.  And someone has to be in the bad end of the line, not that I’m asking to stand there.

The last year has been a dark, scary one.  I have found that I have people that I can count on and who love me.  God has blessed me with new friends, strengthened casual friendships to something stronger, and made me a better person.  I am more tolerant and less concerned with the little things (unless it’s schoolwork, then all bets are off).  I nap more and feel guilty less.  I appreciate what I have and don’t pine for what I don’t (except for a Kitchen Aid stand mixer – that I drool over in stores).  I hug my husband and sons a little longer and a little tighter.  I say I love you more often.  I am more willing to get rid of the clutter.  I’m willing to try something new since you never know if the chance will come again (hello canoeing).

Life can change in an instant.  I know that now.  I only wish I hadn’t chosen such a difficult way to learn it.

Moving On?

ImageOn Saturday, I did the Power is Teal walk.  It was a 5K to raise money for ovarian cancer research.  I walked every single step of that entire path with one of my bestest buds, Denise, who came all the way from Maryland to walk it with me.  My family wasn’t with me, but Denise was.  And so was the lovely lady in this photo.  This is Sharon and she was my lifeline at the OPCC while I was in chemo.  While I didn’t have her for every infusion, she was there for the majority of them.  Most importantly, she was there for the first and the last.  I went in with her and I came out with her.  I refer to her as my “angel in blue” since she wears navy scrubs at work.  She is the sweetest, gentlest, kindest, most loving kick-butt nurse I’ve ever met.  I know God hand picked her to oversee my care.  I never worry when Sharon’s around.

After the walk, the three of us were talking.  Sharon asked me what was next.  I’d beaten ovarian cancer into remission.  I’d met my first goal of walking a 5K (and my feet are still numb from the experience).  I had the opportunity to meet those that have walked the path before me and are thriving 2, 3, 5, 10, 15 years later.  I won 4 UC football tickets with paid parking.  All in all, a great day.

Now, I reflect on what’s next. I’ve said in the past that remission is far harder than cancer, at least psychologically.  When you are in treatment, you know where the enemy is and you are working to throw everything at it to send it packing.  Once it leaves, you always wonder if it will rear its ugly head again.  Every three months, I get the labs.  Every 6 months I get the scans.  Every 3 months, I see my oncologist on pins and needles.  Did the tumor marker stay the same?  Did my scan show something ugly?  Am I okay?  Statistically, the answers should always point to yes.  My oncologist is a perfectionist and rightly so.  He spent 5-1/2 hours cleaning every last cancer cell from my body.  He looked me in the eye and told me on more than one occasion that he was positive he’d “gotten it all.”  I follow his diet and try to exercise.  I attempt to get the sleep I need.  I am working toward finding some type of inner equilibrium to keep my life balanced.  I try to find joy in all things.  But that little voice hangs in the background taunting me,  keeping me from fully engaging in my life.

I have finally gotten to the point where I don’t see myself as an active patient in the mirror.  I finally have enough hair that it looks like I keep it short.  The only reminder is that I keep it my natural color.  I’m too scared to color it.  Hair color can cause cancer on some microscopic scale so I avoid it even though I hate the fact that it makes me look like I’ll be 60 next year instead of 50.  I’m just not ready to take that miniscule risk.  I do like the curls.  Wash and go is great.

What will it take for me to move on?  Another monumental life event?  I certainly hope not.  I had enough of those last year to last a lifetime.  No, I think it will be those gentle nudges I receive.  Like the thrill of completing a 5K, it will be the small goals I set and complete.  I am working hard to lose the weight I had before my surgery.  I am back down to my pre-surgery weight.  Yes, you read that right.  Despite having 10+ pounds of tumors and fibroids removed, I gained weight (thank you steroids).  And I learned that the theory that you’ll lose weight during chemo is pretty much that – a theory.  Most people have to take so many steroids that even if they don’t eat they still maintain or even gain weight.  Add that to the instant menopause and chemo (thank you twice Dr. Pavelka), it’s practically impossible to lose weight.  Yet, I’ve had 2 pounds budge off this month.  Boy, this is gonna’ take a while.  But I digress.

The gentle nudges.  For those of you who’ve been gently nudging me to turn the blog into a book, I have heard you.  I am working toward creating a devotional book.  My hope is that by processing through the past year I can move on with my life and get into what’s waiting behind Curtain Number 2.  I have a lot I want to accomplish, but fear has held me back from some things.  But God hasn’t given me a spirit of fear and while being scared can be a healthy thing, it isn’t doing me any good right now.

So I’m slowly packing up the past year and checking Map Quest for my next destination.  I still plan to learn life’s many lessons, but I hope they are a lot more fun!