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.

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.