Watching and Waiting

Standing on a road I didn’t plan, wondering how I got to where I am.  I want to believe in that still small voice.  I want to hear beyond the noise. – Plum, Need You Now

I am in that lovely place that no wants to be in  – watching and waiting.  You know the place.  It’s somewhere between “blown off” and “definitive.”  You may or may not have an illness or some other disease.  So the doctors call for “watchful waiting.” They test you at regular intervals with the expectation that at the end of a specific period you will have an answer – or not.

I’ve been in the “desert of the unknown” since September 5th.  That’s the day I found out that the unreliable CA125 decided to shoot up from a relatively low 8 to 21.4 in 11 short weeks.  I say unreliable since it’s affected by inflammation and isn’t the best indicator for some women for recurrence. In case you didn’t realize, EVERYTHING causes inflammation; allergies, stress, sprains, strains, foods.  The list goes on and on and on.

When I got my result, the nurse was reassuring.  Dr. Downer wasn’t too concerned since my recent CT showed NED (no evidence of disease).  He attributed the rise to inflammation.  His advice:  come in for my regular appointment, retest in 4 weeks and DON’T WORRY. Right.

I saw Dr. Downer this week.  If you’ve read this blog for any length of time, you know I LOVE Dr. Downer.  He is, in my opinion, the best gynecological oncologist ever.  He handles my sarcasm for what it is; a warped sense of humor couched with fear.  He gets it.  He knows my brain goes into overdrive and races to the bad places that only The Beast can take you.  He takes the extra time to answer every question I have, even the stupid ones.  He lets me cry, rant, scream, question and run through every other emotion.  He also give great hugs.  His nickname is sarcastic.  When I was in chemo, it seemed that he only gave me bad news, while his PA, who I affectionately refer to here as The Lovely Liz, had good news.  It also keeps me out of trouble for mentioning him by name.  But I digress.

At my visit, I mentioned that while I knew I might need to bond with Dr. Downer again one day, I just wasn’t quite ready yet.  He told me that it would probably happen one day.  Ouch!  This was after he explained my watch and wait plan.  Get labs on 10/1, labs again in November.  Any jumps of 3 points or more for 2 consecutive tests mean a PET scan is in order.  A huge jump above normal (over 34) gets a PET scan. Otherwise it’s just pesky inflammation causing a blip in the testing.

I have spent a lot of time thinking and worrying.  I have a chemo plan set up – in my head anyway.  It will be on Wednesdays with my Angel in Blue so I can keep up with co-ops.  I have been blessed with an amazing support posse – Coach Cathy, Sista Sue, Other Mom Kelley, Miss Renie, Aunt Denise and Prayer Warrior Linda.  These women have been my constant source of encouragement and I love them with an unfailing love. My DH is straddling the line between fantasy and reality.  He has to.  Balance has to be maintained in our relationship.  I have shared the news with Mr. B and the Ultimate Bengal Fan.  I hate that they might get sucked back into my private hell.  Moms are supposed to keep their kids safe from monsters.  How can I protect them from The Beast?

I am withdrawing.  My Coach has called me out twice on this.  She’s figured out when I put on the happy face. Mom Kelley has wiped away tears when they just won’t stop.  There is no oasis in this no man’s land.  My tree is no where to be found.  I’m like the nomad the Ultimate Bengal Fan is learning about.  Nightmares haunt my sleep.  Every ache and pain is accompanied by irrational thoughts.  Thus my house is less than sparkling.

I wish I was one of those people who forgot about food and cleaned incessantly when stressed.  Instead I eat anything that might remotely look like it could be dipped, enhanced or mistaken for chocolate. I spend time playing games on my Kindle.  I struggle to write a coherent sentence.  I’m scared, but afraid to acknowledge it.  If I acknowledge it, it might be real.  Let’s face it, reality tends to be overrated.

If you need me, I’ll be chasing my friend NED around no man’s land.  I’m the one  with a large mocha in one hand and Russian dark chocolate in the other.  A girl needs to keep her energy up while jumping to conclusions.

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The Flip Side of 50

Yesterday I turned 50.  I’ve got to say it’s an ugly number – a very ugly number.  Who wants to tell the world they’re a half century old?  I had trouble telling the world I was 30.  Imagine how I choke on 50.

Yesterday, I had a good day. The boys behaved – mostly.  My B-man youngest did his normal stubborn routine with math and didn’t like my choice for dinner (Max & Erma’s).  We had sundaes at Culver’s.  There’s nothing like thick and gooey hot fudge over smooth vanilla custard with a sprinkling of Andes mints on top (grasshopper anyone?).  I got lots of birthday wishes on Facebook and wrapped up planning my elementary World History class.  My oldest gave me the best birthday present ever!  He gave me a hug and told me he loved me.  Sweet words to this momma’s ears coming from her mostly stoic 11 year old (stoic only when there’s no sporting event involved).

Today, life returned to normal.  B-man and I fought and I’m faced with sending him to school (I threatened, so I’ve at least got to attempt to follow through).  The boys broke a CFL.  B-man hated dinner and refused to eat and the Ultimate Bengals Fan is tired (he’s always tired) and is whining because his lamp doesn’t have a light bulb (the aforementioned CFL bulb).  I hear the shower and I’m waiting for something to go wrong.  We’re due.  Everything else has gone wrong.  I can hear the gnomes rustling in the landscaping, chomping at the bit to wreak havoc.

Despite the bad day, I really know what’s causing my bummer mood.  I had my labs drawn at the cancer institute today.  Despite having a “clean” CT scan last week, I still feel like crap.  While I’m waiting to get weighed (no stress there, right?), the alarm goes off indicating there’s “an event” with a patient.  Event is such a euphemism.  Event can mean anything from throwing up to full cardiac arrest.  I had a couple of “events” while in chemo.  Mine involved sweating profusely, itching and being lightheaded.  Never needed the rapid response team, but I did get to meet several of the other nurses at the Center.  They’re all very nice.  I discovered it’s a great way to get individualize attention from your nurse.  But I wouldn’t recommend it.  They like it so much better when you fly under the radar.

Right now I’m waiting for that dreaded number – the CA125.  I can’t decide which is worse.  Weighing yourself after strictly following Weight Watchers and exercising your butt off only to find out that your body had the audacity to gain weight or having your CA125 bump up from 6.7 to 8.3.  Keep in mind that anything below 34 is a normal CA125 reading and it fluctuates depending on stress, inflammation, the wind direction and a whole host of other factors.  “It’s a tool.”  “It’s a measure.”  “It’s a guide.”  Take your pick.  I’ve heard them all from my oncologist (aka Dr. Downer) and his staff.  Here’s what it is – it’s a number.  And as I’ve said before, it’s the only thing I can use to track my disease unless it’s active.  Oh wait, they use the CA125 to track it when it’s active too.

I am in full throttle, pissed off mode right now (excuse my language).  Anyone who’s had cancer can relate.  It’s one of those days when you want to hurl obscenities at the universe for the crappy hand you’ve been dealt.  And it’s not just the cancer hand we’re talking about.  It’s the infertility, the obesity, the debt, the male mind, menopause, your own deranged mind, the government and anyone or anything else you can remotely tie to your insanity.  No one gets it.  Your kids think you have morphed into the most psychotic and meanest mom on Earth (I have proudly worn the mantle of Meanest Mom for years.  Just means I love them enough to make their lives miserable).  They gladly go to bed on time, even early,  to escape your insanity.  Your husband will wash dishes, anything  to avoid dealing with the deranged woman who told her child he could play with  his buddies until dark despite not having had dinner then proceeded to feed him the free chocolate chip cookies she got for her birthday dessert for dinner (true story.  I just did that), so she doesn’t binge on them the night before weigh in (how do those stupid cookies even know my name?).

So now it’s quiet.  Everyone has gone to bed to escape the maniac at the keyboard.  I have prayed quite a bit today.  I think God likes it when I wallow in my insanity.  It makes me appreciate the normal life He’s given me. Tomorrow I will  get up, weigh myself, drink my coffee while doing my devotions, then read the paper.  The boys will get up, school will start and I will once again explain to the Ultimate Bengals Fan why good grammar is so important and why Mr. B must work on finishing 2nd grade math now that he’s in 3rd grade.  Laundry will be washed, bathrooms will be cleaned, floors will be mopped and meals will be planned.   Life will follow its predictable pattern. All will be right with the world even if the number goes up.

That’s the flip side of 50.

 

Two Years Post Invasion

While making my boys a follow-up appointment at Children’s this morning, I couldn’t quite put my finger on why the date made me nervous.  Then I remembered, “Oh crap, it was that day 2 years ago when ‘the mass’ was found.”  I love that term, “the mass.”  It makes my cancer sound like some sort of nebulous blob that could be just about anything when it was really a “malignant neoplasm of the left ovary” (the technical term for my ovarian cancer tumor).  I’m really not sure which term is worse since I have an intense dislike of both.  Being a writer, I suppose, makes me prefer the “malignant neoplasm of the left ovary” since it is simple and completely explains what it was.

I have said that I knew my NMLO (my shorthand for the mass) was cancer as soon as it was found.  I was never in denial about my cancer.  I was, however, in denial about needing surgery.  Funny how the hysterectomy and oophorectomy (removal of the ovaries) scared me worse than having cancer.  I was TERRIFIED of general anesthesia.  I was sure I was going to die from it.  Now I realize I should have been much more scared of the pulmonary embolism that nearly killed me after surgery and the chemotherapy that was to follow.  I suppose that I had accepted the fact I had cancer, but dealing with a total loss of control while under anesthesia was more than my little brain could handle.  In fact, the Monday before my surgery, I practically begged my friend Kelley to agree to homeschool my boys if I died.  Fortunately, Kelley is levelheaded and, at that point at least, was not as close a friend as she’s become now.  Her levelheadedness, prayers and constant texts of Bible verses kept me sane.  Sanity now tends to come and go.

While some people have asked why I thought I got cancer, I’ve realized the question is “Why didn’t I get it sooner?”  With all the fertility drugs, stress, lack of exercise, lousy diet and later in life use of birth control pills (to regulate my cycles), I should have been sick a lot earlier than I was.  Actually I was sick before I got diagnosed, but no one listened.  Now, I have this insane need to be constantly reassured that how my body feels is, in fact, normal after having had cancer.

Normal, however, is a relative term.  Aside from my oft referenced neuropathy in my hands and feet, I have intermittent bone pain (thanks to the carboplatin which caused heavy metal damage to the bones), lymphedema that causes swelling in my legs and ankles (thanks to the removal of 36 lymph nodes during my debulking surgery), hydronephrosis which is a fancy way of saying that my kidney doesn’t drain completely into the ureter (thank you chemo), clotting issues (from the pulmonary embolism), eye problems (again thank you chemo) and a whole host of other things that are too minimal or insignificant to mention.  Oh, and let’s not forget the ever present chemo brain.

I really thought that I wouldn’t be writing a laundry list like this until I was at least 75.  Who’d of thought I’d be writing it 25 years early (okay a bit more than 25 years.  The big 5-0 doesn’t come until next month).  I forget that this is due to the fact that I was a “young” cancer patient in terms of ovarian cancer.  Most ovarian cancer patients are diagnosed in their 60’s.  Such are the joys and trials of being an overachiever.

Actually, I’ve spent a great deal of the last two years beating myself up for falling victim to cancer.  If only I’d stayed at a healthy weight.  What if I hadn’t been so bent on getting pregnant?  What did my husband and sons do to deserve a wife and mom who is no longer all together?  The last one weighs heavy because cancer tears you completely apart.  You stop being who you were and become this person who wears the mask of living happily in remission while living in your own private hell of what ifs.  Personally I’d rather be the blissfully unaware as I was two years ago than the teeth on edge, acutely aware individual I am now.

And I’m not saying this for sympathy.  Please don’t remark how good I look or how strong I am.  This is my reality.  Some people dislike this reality and just want to think that once you’re done with treatment you’re done.  You’re not.  You’re NEVER DONE.  If I’m blessed to be able to be 25 years cancer free, I still won’t be done.  And I’m smart enough to know that ovarian cancer is definitely a numbers game.  It’s one of those cancers that your survival percentage doesn’t continue to climb as you continue.  It kind of levels off at 10 years with a 35-40% chance of lasting another 5 years without an incident, then it hangs at 25% for another 5 years and declines from there.  I’m not a gambler, but I realize that the odds are not in my favor.

Being a realist has nothing to do with my faith.  My faith carried and continues to carry me through life.  I truly believed God would heal me from my cancer and He did.  He just didn’t do it the way I wanted Him to, but He was faithful.  He will continue to be faithful to me.  I just don’t harbor any illusions.  Cancer’s part of our world and I live in it.  I know that my next life will be cancer free and that’s enough.

So with yet another CT looming in the future, another 3 month lab test and pelvic exam, and my 50th birthday looming on the horizon, I’ve come to terms with what ovarian cancer is.  It’s an invasion.  It invades your life, turns it upside down and leaves destruction and confusion in its wake.  It also lets you know who really loves you, who’s there for you, who loves your children like you do and who will just hold you and let you cry.  The invasion is terrifying, the war is brutal and the aftermath is traumatic.  But I’m still standing and that’s a good thing.

 

 

Educating the World

The past few weeks I have felt like a hamster on a wheel; running but getting nowhere fast.  I’m in the midst of my quarterly doctor and lab visits (2 more to go!), Vacation Bible School (VBS), a major writing project, a sick cat and prepping Braeden for endoscopy next week, all while trying to maintain some semblance of a home and the schedule that goes with being a family.  For those who think being a stay-at-home mom or working from home is easy, I dare you to try it for a week.  I can almost guarantee you’ll be running for the front door within a month, particularly if you really like that extra paycheck.

My choices in life (whether I’ve made them voluntarily or circumstances have dictated them) have generally involved me having to, at some point, educate the world.  When my husband and I chose to adopt internationally, we found ourselves educating people on the nuances of international adoption.  For those who aren’t familiar with our choice, here’s a brief history.  After 5+ years of unsuccessful infertility treatments, we chose to adopt.  The best choice for us was international adoption.  It wasn’t that we were opposed to adopting from the US.  It was simply because that God had decided that these two boys – one in Russia and one in Guatemala – needed us as parents, and we needed them to be our sons.  We traveled and had two of the most incredible experiences of our lives and continue to be blessed to watch our sons grow from infants into young men.  Even before the boys came home, we found ourselves educating our families and friends on international adoption, even as we were being educated ourselves.  Once they came home, the education continued.

While we are still asked about adoption, it’s less frequent, especially in the case of our oldest son who was born in Russia.  He looks like the all-American kid, especially when he wears his ever-present Reds baseball cap.  Our younger son is a different story.  Being from Guatemala, he does not “blend in” with the family.  Our immediate circle of family and friends don’t notice his gorgeous brown skin (I am insanely jealous of it) any longer, but others do.  Being Hispanic he will have to face prejudice.  We’d dealt with it once before, while he was in kindergarten at our homeschool co-op, but the parents of the other child were on board with educating their child.  The boys ended up being friends.

This week, I found myself in the position of “educating the world” again.  My normally happy-go-lucky son was the target of prejudice and bullying at VBS.  He stood up for himself and did all right things (told the kid to stop, talked to his crew leader), but it didn’t help.  After night #2, he talked it over with us.  After I calmed down, I requested a crew change and got it immediately.  However, I found myself in the situation of educating the world, when I had to reiterate the whole adoption and “not looking like me” idea.  Seriously, it’s 2014.  This is NOT a new concept.  Yet I did it, not for them, but for my son.  That’s what a momma does.  She advocates for her child in an effort to show them they aren’t strange or weird or anything else.  They are who they are and if people don’t like them, that’s their problem.

Once I cross that bridge, I get to educate the world about homeschooling.  Fortunately, I am not alone in this boat.  I have lots of friends who find themselves having similar conversations.  Actually, I tend to forget there’s a whole other world out there that goes to public or private school.  The boys often have to remind me of this when I ask why there are so many buses on the road.  Yet, I do end up explaining that this is what’s best for our family and, quite honestly, one of the things that kept me sane during chemo.  I had to get up and “do school” with the boys.  It was a reason to get out of bed and stay up.  It was one of the few times I was “normal” during those long months.  My kids have thrived in homeschool and I have discovered that Kyle does much better teaching himself and Braeden has a real talent for science so I can use these to my advantage when teaching them.  I’m not sure they’d be afforded the same opportunities elsewhere.

Of course, my biggest educating moments come with cancer.  Now that I look “normal” again (meaning my hair has grown out to shoulder length and I have color in my face), when I mention that I’m a cancer survivor people assume it was breast.  Then I explain it was ovarian.  Then I either get the look of “Why aren’t you dead?” or “When will you die?” as if ovarian cancer is a death sentence.  And for some women, it is.  If you’ve read this blog for any length of time, you know that I was extremely fortunate in that my cancer was found at stage 1.  I underwent 7 grueling rounds of chemotherapy that has given me side effects I wouldn’t wish on anyone.  I am faced with the lifetime of oncology visits, scans and blood work.  I found out last week that the infusion port that was used for my chemo is a permanent part of my anatomy until it needs to be replaced.  My veins are shot.  They were never very good, but the chemo took what little bit was good and ruined them.  Now I get to educate people on my port, why I have it, why I keep it, and all that jazz.  I have never rebounded energy wise.  Yes, I am on the cusp of 50, but it’s the new 30, right?

As I’ve said, ovarian cancer suvivorship is a tight knit club.  Most survivors face at least one more battle, whether it’s 2 years, 12 years or 20 years later.  You walk a tightrope of living life and glancing over your shoulder for the beast.  The scars don’t go away for any cancer survivor.  Unfortunately, most of my scars aren’t visible (I seriously doubt anyone would want to see my surgical scar given my current physical condition, which is a nice way of saying I don’t have a bikini body).  Let’s face it, no one wants to hear you complain after you’ve completed chemo.  You’re supposed to be “cured.”  You look good, why don’t you feel good?  I want to shake people and say “Because I had ovarian cancer you idiot!”  Instead I smile and try to explain that the very drugs that kill tumor cells have side effects which can last years.  I tell stories about chemo fog enhanced with menopausal forgetfulness.  If I’m really irritated, I launch into a highly scientific explanation of bone loss and nerve damage due to the heavy metals in carboplatin and the cell turnover in taxol. I tend to save that for only the truly irritating “experts” who read a lot, but have never had cancer.  It’s fun to watch them squirm.

I used to plan for everything, now not so much.  I look maybe a couple of months out, but that’s it.  My husband did get me to think about how we wanted to spend our 25th wedding anniversary in 5 years (we just made it to 20, but don’t ask me how).  We decided Hawaii might be nice.  I do have a plan.  I plan to have a bikini body and I know my scar will be on prominent display (hopefully it will just be the one).  This will be one time I won’t mind educating the world.  I figure being 54 and having a killer body is worth the hassle of having to educate the world.

Honestly, we’re all educators.  We’re all called to educate in our own special way; by our words, our actions and our choices.  Some of use just educate a bit more than others.

 

Peaceful, Easy Feeling

Today, I borrow from one of my favorite 70’s bands, The Eagles.  I can hear Glenn Frey crooning now.

Several weeks ago, I chose to undergo genetic testing to see if I had any genetic mutations that would predispose me to further cancer.  I did not make that decision lightly and I shared my choice with only two people outside my immediate family.  My thinking was that if I was a “mutant” (and my friend CB will get my humor here), then I wanted to know so I could mentally prep myself for the future.

Prior to my visit, my husband wanted to know why I would want to know if I did have a genetic predisposition to cancer.  His rationale was, “Would it make a difference?”  Mine was, “Yes it will!”  So at the end of March, I trudged down to the OPCC (Outpatient Cancer Care) where I’d received my chemo and spent a couple of quality hours having my family history dissected.  It was surreal for me.  My mom had gone with me to fill in some of the gaps.  She thoroughly enjoyed learning about all the genetic mutations.  I, on the other hand, was terrified when I saw how many mutations resulted in ovarian cancer.  That’s the difference between the haves and the have nots.  Those that have cancer and are in remission know the scary netherworld they have lived in and will do just about anything to not go back.  The have nots haven’t had cancer and it’s a lot like a science lesson that would inspire Gregor Mendel.  It’s fascinating.

Unfortunately, waiting really is the hardest part (kudos to Tom Petty here).  My mood was not the best in the days after the testing.  I had decided that if I had been BRCA (breast cancer gene) positive that I would go the Angelina Jolie route and embrace my inner flat chested self (I’m sure my loving husband would have objected).  If I had tested positive for Lynch Syndrome (which predisposes patients to both ovarian and colon cancer), I was mentally prepping myself for annual colonoscopies (and this was NOT a pretty mental image).  Of course, I also struggled with how our insurance would treat me after paying for this.  Well, hubby’s employer is still covering spouses – at least for the next year.  I was grumpy, scared and mad.

Of course, all my worrying was for naught, which is not really all that surprising.  Only 12-15% of those with ovarian cancer actually have a genetic mutation.  Those might seem like pretty low odds, except that a woman’s odds for getting ovarian cancer are fairly low anyway (about 2% over her lifetime).  Given my previous experience playing the odds, I wasn’t feeling all that confident.  I mean, what are the chances that a premenopausal woman would not only get ovarian cancer, but also throw a blood clot and develop a pulmonary embolism while in the recovery room?  They are astronomical so I wasn’t feeling all that sure about my chances of not having a mutation.

Once I found out I was “normal,” relatively speaking, I was relieved.  I was enveloped in a peaceful, easy feeling.  My mood immediately lightened.  My ability to deal with stress improved dramatically.  The boys got a calmer mom.  And for the first time since August 23, 2012 I actually felt like I had some control over things.  I know that control is an illusion.  We think we have control over things, but all we can do is make a plan and hope that everyone else cooperates.

It was the first time that I felt like God had given me a chance to hold the reins.  Funny thing was that I didn’t want the reins any longer.  I hadn’t held them in so long that holding onto them just didn’t seem to be that important any longer.  I had found that elusive “new normal” that so many survivors talk about.  Cancer doesn’t define me any longer.  I am so much more than an ovarian cancer survivor.  I used to wear my survivor badge first and foremost.  Now I’ve moved it further down my sash.  My faith in God badge is first, the my wife and mom badges come next.  I wear the survivor badge right next to my homeschooler badge.  Maybe it’s because my hair has completely grown out (gray and all) and it’s now longer than its been in over 10 years.  Maybe it’s because I’m accepting those compression stockings as part of my wardrobe.  Maybe it’s because I’ve accepted neuropathy, a bit of bone pain when it rains, chemo brain and a hernia as part of life.  Maybe it’s because I now prefer to have blood drawn from my port in my chest rather than my arm veins (which are awful from the chemo).

Honestly, I know that it’s because of all the people who’ve prayed for me.  I know it’s because I have friends who have my back and refuse to let me wallow for too long.  It’s because I’ve been blessed with a sports fanatic and a cuddle bug for sons who say they prefer me the way I am right now because I’m here.  I think it’s mostly because I’ve prayed, begged and pleaded for God to tell me what I’m supposed to get from this experience.  What’s to come out of it.  Did I go through this for nothing?

No, I didn’t.  I think the lesson I learned was that what we think is so important, what must be controlled, what we feel has to be done RIGHT NOW, is usually because of our own self-imposed restrictions.  Sure, there are always things that need to be done and some are time critical.  But for the most part, you just lay out a plan for the day and try to accomplish what you can.  If I can scratch two things off my to-do list every day, I’m doing pretty good and I try not to sweat the rest.  I still work under deadlines for clients, but most of them are good about extending time to get a quality piece.  And for those that don’t want to extend a deadline, they are just missing out on one fine article.

The lesson I’m taking away, for today anyway, is that I needed a peaceful, easy feeling and that’s all I really need.

 

 

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.

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.