Life’s NOT a Blessing

Before the fireworks begin, please note that I asked my pastor to read through this and he did. I am not trying to be sacrilegious or start any battles. I didn’t ask for his blessing; I just wanted to be sure I wasn’t crossing any boundary lines. Enough said, let’s move on.

Anyone who says cancer is a blessing is an idiot. It’s not. It’s a horrible disease that takes far too many people and kills them, maims them, disfigures them or just messes with their minds. Cooked up in Satan’s kitchen, its sole purpose is to obliterate any cell that does not share its mutation. I believe the correct terminology would be “Conform or die!” It’s not content to just tear down the patient. No, it has to wreak its havoc on entire families; often ripping them to shreds and leaving nothing that resembles any sort of previously known reality in its wake. It’s like living through an earthquake with just a few minor cracks and broken objects, then having an F5 tornado blow through and destroys whatever’s left of your home and those you care about.

The destruction doesn’t have to be immediate. It can occur months or years later. Ask someone who’s been in remission for 5 or 10 years how they feel about cancer knocking and saying, “I’m back.” Talk to my friend Lisa who has managed to beat back the Beast for 5 years (YEAH Lisa!), but faces a lifetime of worsening neuropathy, debilitating migraines, bone pain and a whole host of other crap while she raises her two grandbabies (who, by the way, are absolutely adorable). Other people deal with continuing bowel issues, anemia, vision problems, lymphedema, bad teeth, osteoporosis, or who knows what.

Sometimes I wonder if the cure is worth the price I paid. Now don’t get me wrong, I am eternally grateful to God for the healing and the life I have. But I am really ticked off at Him as well. Great, I got cancer, which has deeply affected not only me but also my husband and children. It’s okay for me to get it, but did my family have to suffer? Yes, it was a learning experience and my children are richer for it. I’d hoped a mission trip would have sufficed, but apparently not. There is a deep lesson to learn. Yeah, right. Before my kids could tie their shoes well, they had to learn about life and death. This does NOT work for me. And yes, I know other kids have lost a parent. I’m thankful I’m still here, but mad for those other kids who weren’t nearly as fortunate.

Then there’s the whole, “Well, you’re done with chemo and life goes on,” song. Maybe for you, but not for me. True, there are days when cancer isn’t even a blip on my radar any longer. It’s taken me months to get to this point. Then my feet go numb and well, here we go again. It’s like a crazy merry-go-round created by Phineas and Ferb (guess what my kids watch on Netflix?) that I just can’t get off. Right now I’m struggling with PT. My body is so far out of alignment that to walk without my feet swinging out, I have to physically look at them and will them to move heel toe while focusing on my pelvis and lower back alignment. Seriously, walking should NEVER be this hard after the age of 2.

I’m mad, REALLY MAD! No one gets it. The chorus of “You’re cured. You’re in remission. You’ve been blessed with healing,” are sung by the choir. Choir music has never been my favorite. Give me Switchfoot, Casting Crowns, or Mandisa any day. If God was blessing me with healing, why couldn’t he have gone all the way? No neuropathy, no chemo fog, no digestive issues; just pure healing. Oh yeah, because when I asked for healing from my ovarian mass, he didn’t do that either. Okay, he did, just not the way I asked. I asked to avoid surgery. His answer was an awesome surgeon, but surgery with the added bonus of a pulmonary embolism necessitating a 4 day stay in ICU before I could begin recovery from the 13” incision on my belly. As my beloved Coach Cathy would say, “It’s your new normal. You need to accept it and go on.” And being a beloved friend, she knows why I say, “I don’t like it. It sucks!” She nods and gives me a hug. She grapples with the same issues. That’s why I love her so and always count her among one positive that came out of the whole cancer mess.

You know that saying that goes “God never gives you more than you can handle?” Well, He does. What most people DON’T read is that you can only handle it if you give it over to God so the two of you can handle it together. What if you never wanted it in the first place? The catch is you still need to deal with it. Sounds like a bad deal to me. I didn’t ask for any of this, but sometimes a tough life is the gift that keeps on giving.

I am not turning my back on God nor am I questioning His Sovereignty. He reigns in Heaven and set the universe in motion. I believe that Jesus carried the sin of the entire world of His time and for all time to come until His return so that we can rejoice in Heaven when our work here is done. I just have trouble with the fact that the monkey wrenches of life don’t merit immediate intervention. Yes, I can look back and see how God laid the groundwork for our children through our infertility struggle and my husband through a previous relationship that toxic doesn’t begin to describe. I think that may go along with the prayer that goes “Give me patience Lord, NOW!”

My greatest struggle isn’t over what’s happened. You can’t change the past. It’s what’s to come. I know God is beating me senseless to take this blog and create a book, a study, a series, something with it. He needs to imprint that on the 2×4 He’s beating giving me so I get the idea. I think about Beth Moore and get this glimpse of “That’s it.” Holy cow Batman, putting that much of my life out there is not on the agenda. Wait, not my agenda anyway. Then there’s the whole recurrence thing. Seriously Lord, you put me on this path with the dark cloud of recurrence over my head. Harsh, don’t you think?

So no, cancer is NOT a blessing and I will smack you if you tell me that. I really don’t believe God wants me to look at it that way. What He does desire is that I try to find the blessings that came from my experience. God doesn’t want bad things to happen to us, but they do. He created the world and the natural laws that go with it. We sinned and haven’t been good stewards so now we pay the price. I think God gave me hindsight so that I could take some solace in the journey.

What I have learned is that God brings special people to come along side throughout the journey. Coach Cathy and I knew each other to say “Hello,” and that was about it. Now I count her as a confidant that I can share my deepest, darkest fears with and not be judged. There’s my Facebook friend Lisa, whom I’ve never met, but share a bond with that goes beyond the internet. My boys are blessed with someone they can call “Mom” and I can call friend at any time. Kelley, you’ve opened your arms and heart to my family. You’ve shared my tears and triumphs. Momma Renie, I relied on you like the Mom are to me and felt blessed that I was able to be there for you as well (just don’t do it again!). My sister Sue was a constant presence as she’s always been over the last 30+ years, pushing me to get past the wall. Denise visited and cried and hugged and helped me decorate my tree when I was too tired to do it myself, leaving her own family to support mine.

I still hate cancer and the fact that I face a lifetime of shadows. It’s not a blessing, nor will it ever been. It’s a fact of life for me. Like it or not, this is my journey and I’m sure there are many more 2×4’s to come. Here’s hoping I’m up for it.

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Change is in the Air

You cannot have a positive life and a negative mind – Joyce Meyer

After a hectic and less than Merry (for me anyway) Christmas, we were able to get away to Mansfield to visit my mother-in-law and celebrate the New Year with her (thanks Omi!). I managed to talk my partner in life to visit my hands down favorite restaurant ever – the Malabar Farm Restaurant. If you are ever in Perrysville or are able to visit Malabar Farm or Mohican State Park, make a reservation. It’s a localvore’s paradise. But I digress. We were able to have a New Year’s Eve lunch that allowed me to relax enough to finally unclench my teeth which have been perpetually clenched since September 5th.

I’m not sure what caused it, but I think it was the 2×4 along side the head from God that He frequently needs to administer to get my attention. I have been struggling with this new normal that cancer handed me. Everyone has their own mental image of struggle, so let me paint you a picture of my struggle. I am firmly bound in a straight jacket being carried by the men in white coats with my legs flailing in front of me. My hair resembles the bird’s nest that my mother called it when I failed to comb it as a child, my face is red and my eyes are practically popping out of their sockets. I am screaming at the top of my lungs “I AM NOT GOING THERE. PUT ME DOWN!!!!!” Yes, this me – on the inside. On the outside, I try desperately to prove to the world that cancer hasn’t changed me. Obviously, I have been in denial about this new normal.

However, at lunch I found myself somehow at peace. Three words slowly coalesced in my mind – simplify, de-clutter, joy. Those three words were like the lightening bolt I talk to the Ultimate Bengal Fan about (that would be the one that God sends down that says I’m supposed to let him play tackle football). While this one was more figurative than literal (in order to play tackle ball, it will need to be a literal one), it carried the same impact.

My new normal requires that I simplify my life – period. I will never be able to juggle multiple agendas in my mind. Chemo stole most of that ability and menopause took what little was left. I need to make lists – realistic lists – and follow them. I am my own worst enemy when it comes to getting anything done. I create these unrealistic expectations that I know I can’t fulfill on my best day, let alone the days I tend to have. Projects need to be broken down into manageable steps. This is why God gave me an engineer for a husband. He is great about helping me break things down and reining me in when needed.

It occurs to me that the best way to simplify is to get rid of stuff, thus my de-cluttering. Get rid of the clutter (and NOT replacing it), gives me simplicity. Less to clean, take care of, move around, decide who will get it 30 years from now (God willing) in my will, etc. It will make my life so much easier to not have so much stuff. Teaching the Ultimate Bengal Fan and the B-Man is another story, but let’s just tackle one mountain at a time.

I have also added what I call the “joy factor” to my life. The joy factor is basically asking myself a simple question, “Will this add joy to my life?” If the answer’s yes, it stays. If not, it goes. Whether this is actually feasible for the long run is debatable, but for now it’s okay. I realize there are some non-negotiable items that I will answer, “No,” to (like oncology follow-ups, mammograms, editing work for picky clients), but ultimately those things will bring joy. Nothing is more joyful that getting another gold star on your remission chart, a letter stating that your mammogram is unremarkable and getting a paycheck.

I know I’ve written before that ovarian cancer was a game changer for me. It still is. Life as a cancer survivor is one that evolves. The old saying that “Nothing in life is guaranteed,” carries even more truth for a cancer survivor. With few exceptions, no survivor is ever cured. The best we can hope for is a “lifetime remission.”

While I love dancing with NED (No Evidence of Disease), I realize there may be times when his name isn’t on my dance card. So be it. God also added this with the 2×4, you aren’t doing this alone. I have been blessed by an incredible family, an amazing group of friends, and the best medical care team around. Through it all, God is constant. So through the ups and downs of this “new normal,” life is incredible. It’s all in the attitude.

De-clutter. Simplify. Joy.

May 2015 be full of simple joys for you.

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.

Moving On

As we do most Sundays, we attended worship at Cornerstone Church.  Today was “step up” Sunday for the boys.  Braeden moved up to 2nd grade, his first year in elementary Sunday School without Kyle.  Kyle moved to our tween class, Club 56.  They have their own room and are situated away from both the lower elementary and the youth.  It was a big adjustment for both of them.  John and I are loving worship with our new pastor, Pastor Brian.  He reminds me of my youth pastor.  His sermons are relevant and entertaining, not an easy combination for pastors to master.

Tomorrow we begin our 6th year at KTA (Kitchen Table Academy), the affectionate name for our homeschool.  Since our learning occurs at the kitchen table, it’s given rise to the name.  I really should come up with something that will look better across the top of a diploma, but I haven’t stumbled on one yet.  I still have a couple of years.  I mean, can you seriously see UC accepting a transcript from Kitchen Table Academy?  I cannot believe Kyle is starting 5th grade.  With the exception of some stumbling over double and triple digit multiplication, my son is a practically a middle schooler.  Next year, he will be considered one at Learning Tree, our homeschool co-op.  What happened to that little bundle I brought home from Russia?  I finally understand the old saying, “The days are long, but the years are short.”

We are moving on this year in many ways.  We are starting new grades.  Mom is hoping to pick up more freelance work.  Both boys are playing sports again – Braeden’s soccer team won their first game yesterday and Kyle starts flag football practice Tuesday night.  John continues to hone his project management skills at Children’s.  We are beginning to move on.  Yet, I still get stuck.  In a few weeks, I have my CA125 drawn to track my tumor marker, have my 6 month CT scan and undergo yet another exam.  Yes, it’s preventative and given the results of my last CA125, I really don’t expect anything to show up.  Of course, I never expected to have cancer either.

Pastor Brian spoke about the bad times in life.  You know those times when life just knocks you for a loop and you can’t get back on your feet?  I’ve always known that when faced with struggles, I have two choices.  I can whine, moan and complain or I can face it head on.  Cancer makes you do a bit of both.  You have to face it head on.  It’s now your reality.  But I really don’t see how you can manage to make it through without whining, even if it’s just a little bit.  I chose to cling to God’s promise that even in my darkest hour, he wouldn’t leave me or forsake me.  He would lead me to those still waters and restore my soul.  Yes, I did have those times when I yelled at God, quite a few in fact.  My mentor, Pastor Linda Troy, once told me that God doesn’t care how much we yell at him.  It means we still believe in Him.

When I got the definitive diagnosis, I prayed like I’d never prayed for myself before.  I begged and pleaded with God to heal my body.  I visualized His healing hands.  I did it all right, but I still had a massive tumor on my ovary.  Funny thing is, if I had been healed of just my tumor I still would have had the nasty blood clot in my right leg.  It still would have probably broken off and, had I been anywhere but post-op, I probably would have died.  Hmmm.  Once I had the benefit of a couple of months of hindsight, I saw that.

That still leads me to why I had cancer.  Why couldn’t I have just had a massive benign tumor?  My oncologist told me that we will probably never know what triggered the cells to turn cancerous.  Even if we did know, it wouldn’t change anything.  I’d still would have had cancer.  Okay.  Here’s where choices really kick in.  Do you chose to wallow or do you choose to move on?  My friend Cathy told me I had to move on.  No choices.  I have 2 young sons and a husband.  While they were good reasons to move on, the only reason you can move on is because you feel like you have to.  God wants me to move on.  Granted, He let me have pity parties.  He gave me two wonderful friends who let me rant, rave and cry about how lousy I felt.  I will never, ever be able to repay Cathy or Lisa for listening to me when they had their own lives to live, but they both took the time to let me do what I needed to do.  Then I was able to move on.

Moving on means you accept you are not the same person you used to be.  Unfortunately, I will always have the “C” word in my background.   I feel a strong pull to work with ovarian cancer patients.  I’ve always been interested in healthcare and often write on healthcare topics.  Would I have found my niche without having ovarian cancer?  Maybe.  Did it affect me?  Definitely.  The person who entered Good Sam Hospital on October 17, 2012 is not the same one who left October 25, 2012.  Nor I am the same person who completed chemotherapy on March 15, 2013.  If we are open to things, God will continue to use our best and worst experiences to shape us.

So I need to be moving on now.  Life is about being an active participant, getting in and getting involved.  While cancer will always be a part of who I was, it doesn’t have to be a part of who I become.  And if it comes back. well, we’ll just move on with life and kick it back to where it belongs, in the past.  So we can get on with the future.  Moving on!

It’s Outta’ Here

It’s official – I’m in remission.  I found out on Tuesday, but have been waiting for my doctor to call and tell me the radiologist read the wrong scan.  Actually, he read the right one because, of course, it showed an anomaly.  So I’m off for yet another scan this coming Friday.  While I’m sure the spot on my vertebrae is nothing more than a remnant of an old back injury, it’s tough to shake that evil little voice.

When you find out you have cancer, you suddenly become Atlas.  You carry the weight of the diagnosis on your shoulders.  While I found I was able to gain a sense of peace about my own mortality, I did not want to leave my husband or children under any circumstances.  In fact, my prayers often focused on them rather than myself.  It still seems selfish to pray for myself, unless I’m seeking what God wants to teach me or how He wants to use me through this experience.  I know I had a whole brigade of prayer warriors behind me and that may be why I never felt the need pray for myself.  I carried my fears, and those of my family, on my shoulders.  This is probably why I have a bone spot on my spine!

Eight months ago, shortly after the mass was found, I imagined myself with Jesus on the beach, just like the “Footprints” poem.  I was in a panic begging Him to heal me.  I had two boys who needed their Mom.  I couldn’t put my own Mom through the stress.  What about John’s job?  What would happen to the house?  Eventually Jesus got me to sit down next to him on the beach and watch the waves.  He built a fire and we sat.  I still asked Him to heal me, but he just smiled.  He promised to be with me, no matter what happened.  And while I still was scared, I knew God had the situation in hand.

Looking back, I know He did.  In retrospect, I realized that if He’d healed me, I would still have had the blood clots in my leg.  The clot that broke loose and traveled to my lung so the recovery room staff and surgeon could take immediate action.  And one of the top vascular surgeons in the city “just happened” to be in the hospital to oversee my care.  Had I been healed of the tumor, the clot would have not doubt broken off and I could have died at home.  God knows so much better than I do and sometimes I need a 2×4 to the head to remember that.  I would have preferred to skip the whole chemo thing, but God has plans for that experience as well.

The clean scan lifted the weight from my shoulders.  It could have been lifted a lot sooner if I would have let it.  Now I stand a little straighter and step a little lighter knowing that the cancer is gone.  Jesus has put out the small campfire on the beach and asked me to start walking with him again.  As we start off on our journey, I sincerely hope I remember what I’ve learned.  Life is not a path meant to be walked alone or even with family and friends.  It’s meant to be walked with the One Who Knows All.  I’ve have learned so much so far.  There was a time I would have been afraid to find out what God had planned for me.  Now I can’t wait to see how He wants to use my experience.  It’s time to get outta’ here and see what God has in store.