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.

Advertisements

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?

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!

But What About OVCA?

I have read, to almost the point of ad nauseam, about Angelina Jolie’s decision to have a prophylactic mastectomy because of her genetic risk for breast cancer.  Now, before all everyone who has breast cancer, knows someone with breast cancer or has the BRCA gene and has undergone the same procedure decides to send me hate mail, unfriend my mother or send a virus to my computer, I am thrilled that there is genetic testing available for breast cancer and that women have the choice to take matters into their own hands.  Knowledge is power and this is immensely important when dealing with issues of life and death.  Breast cancer, like all cancer, is a beast and takes far too many beloved women (and men) before their time.  I pray for the day when cancer is eradicated in all its forms.

The number of women diagnosed with breast cancer is staggering.  According to the American Cancer Society 232,340 women will be diagnosed with breast cancer this year and 39,620 will die from it – a 17% mortality rate.  When people find out I’ve had cancer, they assume I had breast cancer.  They talk to me about tamoxofen, radiation, neulasta and chest CT’s.  I smile and tell them I am in remission for ovarian cancer.  That’s when the eyes get big, the jaw drops and you can see the words scrolling across their brain, “That’s the one you DIE from!” then excuse themselves from the conversation after telling me how sorry they are.

The number of women diagnosed with ovarian cancer pales in comparison.  Each year, approximately 22,000 women are diagnosed with the disease and 15,700 will die.  That’s a staggering 74%!  Yet no one talks about it.  Maybe if we ignore it, it will go away.  Sorry folks, it’s not going to happen.

After reflecting on this for 7 months, I have come realize that one of the reasons breast cancer gets “better press” (for lack of a more appropriate term) is that breasts define a woman.  Think about it.  Breasts are used to feed babies as well as define our shape.  Lots of men are breast men and TV does nothing to mitigate that stereotype.  If you’ve ever seen me, you know that I am well endowed, so I speak from experience.

A mastectomy changes your shape, even if you have reconstructive surgery.  You can be flatter, perkier, or bigger.  Or you can choose to join the ranks of “flat and fabulous” as a good friend of mine has.  The cancer is always a reminder that you are somehow different than you were before.

On the flip side, ovarian cancer also takes away what makes you a woman – far more than breast cancer.  After all, men have breasts (and do get breast cancer), but they do not have the rest of the plumbing.  When ovarian cancer strikes, it forces a woman to have the surgical removal of everything that makes her female – her ovaries and uterus.  Ovaries produce the eggs needed to create life and the uterus carries that new life until it’s able to live outside the womb.  They also stimulate the production of the female hormones.

A hysterectomy is not like menopause.  Menopause is a gradual, natural process that generally occurs after childbearing years and has some “delightful” symptoms.  A hysterectomy is a drastic thrust into menopause.  Suddenly hormone production is shut down and life changes.  In addition to the major surgery (most hysterectomies for ovarian cancer are traditional with a nasty scar that divides your abdomen in two parts), the chemotherapy throws whatever is left of your sensibilities is thrown out the window.  Basically, you get immediate hot flashes and are crabby all the time.  And the younger you are, the more devastating it is.  Losing your breasts is awful, but losing your ability or choice to have children can be earth shattering.

It’s only been in the last few weeks that I finally realized that there will be no more periods.  While I was never able to have biological children, I did have two miscarriages.  Somewhere in the deep, dark recesses of my mind, I think I held out hope that maybe, just maybe, God would bless me with a biological child.  Now I am finally mourning the fact that I was never able to experience the joy of holding my own newborn.  While the fact that two women I’ve never met have blessed me beyond my wildest dreams with two amazing sons, there was always a part of me that wanted the experience of carrying a baby.  At 48, I would be doing that anyway, even if I’d never had cancer.  I cannot imagine what a 25-35 year old woman would be feeling in my shoes.  The choice was just pulled out from under them.

There is no genetic test for OVCA.  Actually, there’s really no definitive test for OVCA.  We do have the tumor marker test, CA-125, but it’s notoriously unreliable.  We can get CT scans, but only after OVCA has been misdiagnosed as endometriosis, IBS, bladder dysfunction, or any of a number of other conditions.  And while there is only a small percentage of women who get breast cancer actually carry the BRCA gene mutations, there is no genetic test for OVCA.  Mammograms may not be completely reliable as a screening test, but women are encouraged to do self exams which do detect a number of cases.  Unless I’ve missed some research, you can’t do a self exam for OVCA.  Pap smears detect cervical cancer, NOT ovarian cancer.  This is one of the reasons that ovarian cancer is dubbed “The Silent Killer.”  Most women aren’t diagnosed until they reach stage 3 or stage 4 making chemotherapy more grueling, recurrence more common and drastically reducing the chances of actually making it to remission, let alone the magic 5 year “cured” anniversary.

BRCA has a great PR machine that generates an amazing amount of money for research.  Not only does the American Cancer Society do research into breast cancer, the Komen Foundation, Avon and a host of other companies throw astronomical sums of money at researchers.  Let’s face it, any disease that can get grown men who chase a piece of pigskin on a large field (talking football here folks) to wear pink for an ENTIRE month, has got one hell of a lobby.  A friend who survived breast cancer told me shortly after my diagnosis that sometimes she feels more like a “commodity” than a survivor.  Nevertheless, breast cancer has a lot of money for research, patient education and support.  The entire month of October is pink.  A local TV station here is pink the 19th of every month.

Right after my diagnosis, my  mom called the American Cancer Society to get information about ovarian cancer.  She was told they didn’t have any because they didn’t devote their resources to a cancer that affected so few women.  Yeah, I get it.  22,000 pales in comparison to 232,000, but tell that to the 22,000 women who will get that diagnosis this year.  Tell that to the families of the 15,000 women who will die this year.  I just to love the color pink.  I had lots of clothes in my closet that were pink.  I tossed them all, except for one T-shirt I keep in honor of my friend Cathy who has stood by me throughout my entire journey (she’s a BRCA carrier and survivor).  I now buy clothes that are teal.  Teal is the color for ovarian, uterine and cervical cancer.  Teal is beautiful and I also look good in it.  I guess I’ll have to settle for the Miami Dolphins and the Seattle Seahawks to wear teal and just pretend they are wearing it for ovarian cancer.  My friend Cathy wears teal to honor my fight.  Actually teal and pink look good together.  There are a couple of groups that are pushing to join pink and teal.  Doubt it will happen though, since we don’t have the PR machine.

So I fight for recognition by volunteering for groups like the National Ovarian Cancer Coalition and the Ovarian Cancer National Alliance.  I will be walking in the local ovarian cancer walk in September to raise funds for research (my oncologist gets funding from this walk to continue his research).  I post things on Facebook.  I talk to groups.  I pray for a cure.  I do anything I can for my sisters in teal.  We are a small but mighty group.  We are fighters.  And we continue to be overshadowed by our sisters in pink.

Angelina, I am thrilled you brought BRCA testing into the open.  I hope it helps women get testing and saves lives.  But please don’t forget about your sisters in teal who are fighting just as hard, if not harder, than you are.  We’re here fighting and don’t want to be forgotten.

Changes, They Are Comin’

I am amazed at how much my body has changed in the last month.  I have hair on my head, eyebrows and eyelashes, and have even begun the unpleasant task of shaving once again.  I no longer look like a pale version of myself.  I actually look like a real person!  It’s not disconcerting to look in the mirror any longer.

Of course, now that chemo is over and I’m in remission my doctors required me to make changes.  Sometimes, though, they are in conflict with each other.  My oncologist has strict dietary requirements for me.  Absolutely no artificial sweeteners of any kind, no soy (to the extent possible) and hormone free dairy and meat.  After pricing organic meat, I decided that becoming an ovo-lacto vegetarian looks pretty good.  I have been buying organic eggs for a year now and with the exception of cheese (which is just way too expensive for me to buy completely organic), I have been pretty successful.  Fortunately, my oldest son has never been much of a carnivore so he’s good with the changes.  My hubby is a vegetable lover, but has requested meat on the weekends to meet his carnivorous needs.  My youngest is the pickiest eater on Earth so it doesn’t really matter what we do as long as he can eat a fish stick, hot dog or pizza.

Yesterday, my vascular surgeon started me on Coumadin and started weaning me off my shots I was taking to thin my blood (yippee!).  However, leafy greens have to be limited when you take Coumadin.  Now I LOVE spinach, lettuce and Swiss chard. Limiting me to two servings a day is tough since I eat salad almost every day.  While she has said that she will tweak my meds to meet my diet, a vegetarian diet makes it harder to manage Coumadin.  Thus my dilemma.  I am hoping that I am one of those people that their body just adapts to the Coumadin quickly and I can get on with life.

Then there’s the whole weight loss thing.  My mom once told me that losing weight after menopause is hard, VERY HARD.  Now I know that my mom is nearly always right, and this time is no exception.  My hope is that a plant based diet will make it a bit easier to lose. And I joined sparkpeople to help me on my journey.  As my neuropathy in my feet levels out, I am hoping that I can exercise more to boost my metabolism.  So my oncologist tells me to lose weight and if the other symptoms of menopause get too bad, he’ll consider putting me on progesterone, which has the side effect of weight gain.  I wish this guy would make up his mind.  You can’t have it both ways.

I’ve changed how I look at things.  Things I used to sweat don’t phase me much anymore.  Yes, I still worry about my family and paying the bills, but if the laundry doesn’t get done or if I don’t get the dishwasher unloaded before 9AM, it’s just not a big deal.  I take more time to do things I enjoy.  I have developed a real love/hate relationship with my computer.  It’s how I earn a living, but I realize what a time waster it can be.  I try to journal more, write more articles and hope to continue this blog.  They seem more beneficial to life in general than playing games on Facebook.

The biggest change I’ve noticed is how I face life.  Remission is, by far, so much harder than having cancer.  When you have cancer, you see the enemy and feel like crap because you are actively fighting it.  When you’re in remission, you find that you begin to dread those labs and scans even though they are much less frequent.  The Beast lurks in the background waiting for its chance to strike again.  The oncologist tells you to live your life, but the life you had is gone.  You have this new life and cancer will always be a part of it.  This is tough for people who have never had cancer to “get” and that’s okay.  I’m thankful for everyday that I don’t have cancer.  I’m thankful for every night I get to kiss my boys goodnight, for every hug from my husband, for every phone call from my family, for every hug from a friend, for morning I wake up.  I’m content with my life.  I was always discontented before.  I still don’t know what God has in store for me, but it’s good and that’s enough.

I like being content.  That doesn’t mean that the boys don’t drive me nuts, that John and I don’t argue, or that I agree with everything everyone tells me, I don’t.  But I am content with what I have right now.  And that’s a huge change, and definitely one I can live with.

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.

Life’s A Beach

Yesterday I spent a wonderful afternoon feeling nearly normal.  I had the opportunity to go out for lunch with my husband, do some shopping, then get a peppermint hot chocolate at Starbucks.  Before October 17, 2012, we did this at least once a month.  Now it’s a major production and I’m not talking about getting a sitter.  We need to time our dates based on where I am in the chemo cycle.  Actually, yesterday wasn’t a great day since my white count is tanking, but I really needed to get out of the house.  And sometimes sanity has to trump health concerns.  Besides, it gave me an opportunity to wear my new wig.

While we dining at our favorite restaurant, we talked about, what else, my cancer.  It’s an all-consuming topic.  I cannot wait until the day that I can actually go an entire day without thinking about my cancer.  That will be a while.  John wanted to know what it was like for me, aside from the physical challenges of joint pain, neuropathy and nausea (all of which were in the brochure, by the way).  I told him it was a lot like being on a beach.

Imagine you are on your favorite beach in late fall or early spring.  The sky is gray and it’s misty, cold and damp.  Despite the conditions, you are at the beach and you will take a walk on the sand since you are, after all, at the beach, and by golly this is what you do.  Jacket zipped, hat in place, mittens on and shoes tied, you tell your husband/wife/traveling companion that you are taking a walk.  After they point out the obvious bad weather, you reiterate that you are, in fact, at the beach and you did not come all this way to just sit and watch the ocean.  You are going for a walk – period.  After they roll their eyes, you set out, determined to enjoy this walk.

As you set off, you realize the air is much damper and colder than you realize.  It’s like the air is trying to push through your pores, straight to your bones.  You pull up your collar and march onward.  A little wet weather is not going to ruin this walk.  As you walk, you try to remain upbeat and talk to yourself.  However, it’s hard to make sense when your teeth start to chatter.  Pulling the hat down and crossing your arms across your chest for warmth, you pick up the pace to stay warm.  This weather is not going to beat you.  You can hear the surf pounding next to you.  When you pause to look at it, you realize you can’t see it.  They you look toward higher ground and you can’t see that either.  In fact, you can’t see past your own feet.  Like many damp, cold days by the ocean a fog has rolled in and it’s as thick as the proverbial bowl of pea soup.

Fog has this weird way of disorienting you.  Even with GPS and fog lamps, it’s still hard to tell where you are on the road even if you’ve driven the road hundreds of times.  There are no landmarks you can use to orient you.  Basically it’s a leap of faith that you’ll make it to your destination safely.  When John and I were dating, there was a really foggy stretch of I-71 I had to drive between Louisville and Cincinnati.  Even though I drove that stretch every week, I still got disoriented when I couldn’t see more than 3 feet in front of me.  I knew the fog bank was generally 5 miles long, but that was the longest 5 miles I drove.

Back to the beach where you are now standing in a fog disoriented.  You weren’t paying attention to where you were walking because you were making a point.  Are you 500 feet or a half a mile from your starting point?  There is no reference point.  Shivering you realize that while you know you’re on the beach, you’ve got no clue where or how you’ll get back.  You know you need to do a u-turn, but how far do you walk back.  Now a light rain is starting and messing up your footprints, which you had just brilliantly decided to track back to the starting point.  Now you are not only cold, but you’re wet, mad and a bit scared.  You turn around and start walking back trying to figure out where exactly you need to stop.

You try thinking in reverse – what were you thinking as you walked to time the trip back.  The fog is getting thicker and thicker and aside from the sound of the waves you hear nothing to orient you and your visibility is down to zero.  After what seems like an eternity, you hear a song.  It’s a song that means something personal to you.  It’s your song, the one you share with your special someone.  And there is a faint light in the distance.  You slowly make your way toward the sound and light and realize it’s coming from your vacation home.  Your true love is guiding you back.  When you finally reach home, you rush into their arms and realize you are safe.  What’s even better is they don’t give you “I told you so,” or anything else that you probably deserve.  You just get a much-needed “I love you.”

Chemo is like a foggy beach.  You can’t see where you’re going.  You’re stuck on the beach.  If you stop chemo, you’ll be forever in the fog because the monster will definitely be lurking in the fog waiting to grab you.  You know that at some point the fog will break, the sun will shine and you’ll see the sun shining on the waves and you’ll be able to see your path.  Until then, you’re stuck in the uncertainty of side effects, lab numbers, and doctor visits.  You just wait until the fog starts to lift.  And if you’re lucky you have a true love that brings the music and has a light to keep you safe until the sun shines again.