longterm plans

it wasn't that i didn't feel like a cancer patient when i first met with the surgeons back in april. i did.  and certainly when i came out of my 7 hour operation on that saturday evening in may, it was pretty clear things had radically changed for me.  a few weeks ago when my name was added to a prayer list in our church bulletin...that all felt kind of cancer-patient-ish too.  for goodness sake,  i feel like a cancer patient even when i select my lettuce and purchase my milk at the market!  everything has changed in some way.  but it was only last week when i walked into the cancer center for the first time that it truly all took hold.  it felt different.  more real.  more serious.  more hushed.  as if the shades of taupe and grey and cream decor were carefully chosen for those unable to bear bright and vibrant.  carefully selected for those already living in harsh and more in need of calm.  serene.  cool.   as rick and i navigated the quiet hallways of the building, i realized every office and each suite had one thing in common:  cancer treatment.  this was a new building for us and this was a place which was completely dedicated to the long haul.  this was about the ongoing.  this was about treatment.  this was different.


a week ago, when i first visited my oncologist here in this cancer center, we didn't have my test results back yet.  we sat down with dr. ballard and tossed around a lot of hypotheticals.  without that oncotype answer, we just didn't know exactly what i would need.  would it be only medication or would i be scheduling chemotherapy sessions?  we couldn't know for sure.  regardless, it felt different than an operation or a recovery.  it reminded me that cancer was something you managed.  something you lived with.  it was something that could be cut out or even cut off, but that was only part of the process.  it wasn't just about removal, it was about the rest of my life.   and more would be needed.


how do i explain that?  i am not sure.  i am a woman who likes immediate answers and quick results:. paint the room.  clean the fridge.  change the curtains.  tear out the shrubs.  whatever it is, i like to just do it.  get it done.  complete the task and then move on.  one of the frustrating things about cancer has been learning how it is not like that.  even with an aggressive surgery there would be lifetime management.   i was having difficulty thinking past the day's end, let alone a lifetime.  one of my hardest weeks after diagnosis was when i realized i would be in this game for a while.  maybe forever. there were no shortcuts. and so much of it was about choice and choosing and changing.  cut out sugar and fats.  limit red meat and alcohol.  increase exercise and and vegetables and fruits.  choose multi-grains and anti-oxidants.  the lists seemed endless.   i was completely overwhelmed for awhile with the enormity.  all of a sudden i felt like a young woman battling an eating disorder.  i couldn't put a bite of food into my mouth without questioning if i was starving the cancer or feeding the cancer.  talk about an immediate weight loss program!  i moved past that initial shock and have tempered the food thing a bit,  but i am still the woman painstakingly peering at labels in the grocery store.  my kids are doing their best to wait out my health food kick, hoping daily to find that cheetos and poptarts have reappeared in the pantry.  but i buy spinach and blueberries and avocados and organic milk and quietly repeat my mantra:  a lifetime kids.  a lifetime.


today i headed back to the cancer center.  this week we have results.  this week we entered dr. ballard's office with oncotype securely in hand.  i held my number 15.  i held my low risk number tightly and i wasn't letting go easily.   this week my friend, meritt, walked in with me. she and i had been lighthearted and chatty all the way there, but just before seeing dr. ballard i began to panic a little.  what if i was wrong.  what if he knew something else...something new...what if he had changed his mind and decided at 15 he would recommend chemo.  what then?  i had already brought home the cake and lemonade.  we had already celebrated.  i had even posted a picture on facebook - it had 53 comments and 111 "likes" for heaven's sake!  i began to doubt my premature celebration.  i began to doubt my confidence. i began to doubt.


after a few minutes more of quiet panic, in came dr. ballard.  dr. ballard has a wonderful presence.  he is the epitome of a southern gentleman, soft spoken and unhurried.  both times meeting with him i felt more like we were sipping lemonade on a front porch, then discussing cancer in an examining room.  i knew immediately from his smile, he hadn't changed his mind.  he kept repeating over and over again, "you've got a good score, jody...you've got a fine number. a fine number."  he brought out the graph from genomic health and he showed me my percentages and he circled my spot on it all.  all the while he nodded his head approvingly and clucked a bit like a proud mother hen.  he was pleased.  he explained some of the information and even explained some of the risks.  he sadly told us how just a few years ago he was still giving women in my very situation high doses of chemo.  they didn't have the oncotype test back then.  he didn't know better.  he was thrilled that today he could cross chemo off my list.  i was in a low risk of recurrence and i would not benefit even 1% from chemo.  that was it.  he was sure.


after the assurance of good news, we talked about how we would manage my health.  i will be on a daily medication called tamoxifen for the next five years.   every 3 months i will see dr. ballard and have lab work completed and some tests run.  yes, this is treatment, but it is do-able.  i will happily take the medication and visit doctor ballard and drink my green tea and eat my blueberries and exercise regularly.  i am thankful to do so. i am grateful.


just before leaving his office dr. ballard sat back in his chair.  he paused a second, looking me in the eye, and then in his soft, southern way he said , "jody mcnatt, i have a good feeling about you dear.  i think you are going to grow up to be a nice, little old lady. yes, yes, indeed."
i like this part of the longterm plan.  yes, yes i do, indeed.

15

we ate dinner backwards last night.  dessert first.  it was that kind of a day.  i could not wait to unveil the cake lighted and displayed behind the dining room doors.  it boasted an important message for my family: a chocolate frosting 15.   that was my number.  i had gotten the long-awaited call from my surgeon's office.  the oncotype was in and my number was low.  15.  anything under 18 meant i could be ruled out of chemotherapy.  i was ecstatic.  i started to dial my family immediately...but in a moment of great, and uncharacteristic restraint, i stopped.  i was pulling into the parking lot of whole foods.  i would order a cake instead.  oh, i can't explain how my mind works at times.  i don't understand it myself.  but a cake it would be.  and a bottle of sparkling-but-too-expensive-lemonade.  i put them both in my basket and headed for the checkout.  i don't remember the steps.  i am sure, however, i floated from bakery to register.  the cake wasn't especially pretty and the lemonade wasn't exactly sparkling, but it didn't matter.  i had discovered that very same hour i was skipping a summer of chemo.  you don't get news like that everyday.  we certainly don't get to celebrate like this just any old day.


at the checkout, the gal behind the register saw my cake and politely asked if i had a child turning fifteen.  "i have one of those, i do," i told her.  but this cake is not about birthdays.  birthdays are wonderful, but life days are precious.  i didn't tell her all that.  i simply told her the story:  my oncotype (i explained the odd word) came back today and it was a low number and this was good and i wouldn't need chemo and i was going to surprise my family and this cake and this lemonade were all part of my plan. i finally stopped rambling.  she looked at me,  brown eyes steady on my blue.  "that's amazing," she said.  and then her brown eyes began to fill.  she said, "that's beautiful and i'm so glad you are telling me."  she said she understood my joy because she, too, had a run-in with cancer.  it was her little girl.  her daughter turning nine this october was diagnosed a few years back with choroidal melanoma (eye cancer).  the eye was removed and it was sad.  heartbreaking and hard. but when the test results came back and they had discovered her daughter's cancer had not spread to her brain, there was great rejoicing in their home too.  a wonderful and wild celebration.  you learn to take the news of something good when you are living under the diagnosis of something bad.  she bagged my small cake and expensive lemonade and then she stepped around the counter.  in her sweet, and somewhat shy manner, she asked hesitantly if she could hug me.  "of course!" i exclaimed, grabbing this stranger in my careful-post-surgery-hug.  we stood there hugging in the middle of whole foods.  she, this complete stranger, was the first person i told and the first person i embraced in celebration of my news.  and somehow it felt right.


i am sure, more than ever, we all have stories.  this woman in whole foods affirmed it.  we tend to look at someone else's cake and make narrow assumptions, don't we?  this woman is happy and throwing a splendid birthday party for her lovely daughter turning 15, and all is well...we think. we are so sure in our thoughts and in our presumptuous ideas.  would anyone ever have guessed differently?  would anyone ever have guessed this was about chemotherapy results not a birthday party?  no.  absolutely not.   but the difference was, this woman asked.  she asked and i told. and then she told.  and we connected.  sometimes it can actually be that simple.  but someone has to stop assuming and start asking. i would like to be more this kind of person.


cancer has taught me so many things. i am not sure where to start in the listing of lessons.  but last night,  when the celebration had ended  and the children were tucked in bed and i was alone with my evening thoughts, i could not help but think of the woman working in whole foods.  how is it we, two cancer-stained women, could stand their smiling?  she, with a daughter, less one eye.  me, with my own kind of amputation.  i laid in my bed and marveled at it all.  i know there are so many of us suffering with stories, sad and full of sheer hopelessness.  i know this.  and it is incredible to me to believe we could ever find joy again in things like cake and lemonade and grocery store hugs.  sometimes when you are under the blanket of something so heavy you believe...you really, truly believe... you'll never, again, know something sweet and sparkling and kind.  but you do.

my onctotype came back at 15.  it will be my magical number for days to come.  but what if it had been 51?  that happens, you know.  would i be able to rush out for a cake and a sparkling drink?  probably not.  but would we have gotten through it?  i am guessing, yes. because i have learned in these months to accept the good and the bad.  i have, by no means, learned it perfectly.  but i am learning to trust God with my story. i am learning about stories.  i am learning we all have them. i am learning about the need to tell them.  by God's grace, i may not need chemo this summer, but i am, more than ever,  in need of Him.  and regardless of my number, that is my story.

the ocean and nothing

do you remember that word i used in my last post,  end of second paragraph in my "plan c" piece?  the word i said which seems to be thematic to this blog ...our journey... my life.  the lesson i supposedly keep failing to learn.  the thing which i can't ever seem to grasp.  yeah, that word.  waiting.  w-a-i-t-i-n-g.  waiting.  guess what i found out earlier today?   more waiting.


we are at the beach this week.  just for a few days.  rick has a conference and it happens to be at the ritz on amelia island.  how lovely, "well, of course honey, we'll come!"  so this morning with suits on and sunscreen applied we were heading out the door for some time on the beach.  just the youngest three and me. rick is in meetings and the older two are in guatemala on a mission trip. (yes, the irony hasn't escaped me:  some of us at the ritz and some of us on a mission trip).   i am fine managing the littlest three, but find myself wondering what we can "do without" at the beach today.  i can still carry pretty much nothing...like a sand shovel. maybe.  bella carries less and, in fact,  sometimes needs herself to be carried.  which leaves a slightly scrawny 11 year old girl and her 8 year old brother to do the heavy work.   so there we are with our great, heaping piles of beach stuff when my phone rings.  i recognize the number immediately. it is jennifer,  my surgeon's assistant.  when going through cancer you quickly learn the numbers of your different doctors.


i tell the kids to hold tight and i take the call.  all beating heart and pounding pulse.  my stomach is flipping and my knees are weak.   it feels somewhat similar to that call i took on april 19th.  that one which started this whole ugly ball rolling.  i know she is calling with my oncotype results, but have absolutely no guess at what she will say.  wildly good news or wildly bad.  but i just want to know.  dr. barber's nurse, jennifer, begins with morning pleasantries and it is all i can do to not scream, "just tell me, already!" i am prepared for the good and i am even kind of prepared for the bad, but i am not prepared for what she tells me.  "jody, we got your oncotype back, and i am so sorry, but the results are inconclusive."  it seems the tumor sample they sent to the genomic lab in california does not contain enough genetic information to provide an accurate number.  i am stunned.  i didn't know this was a possible outcome.  i hadn't prepared for it.  i wasn't expecting it.  i am not sure what to think.  immediately i have a million questions in my head but find myself stuttering over the words necessary for the asking.  she tells me that only one other time has this happened in these past few years of running this test.  this just never happens.  she is surprised and she is sorry.  she is sorry and i am unsure.   unsure what to do with this inconclusive news. the no-answer.  she talks about sending another sample of the tissue.  i tell her to send the whole insane tumor for goodness sake.  whatever.  just let's move on.  i feel patience bleeding out of me.  it takes with it my breath, my energy and my calm.  i am still holding that sand shovel.  and i finally let go.  i am hiding in the master bath of our suite and only the marble is cool.  everything around me and in me seems suddenly hot.  boiling.  i am not sure how to walk out of this room and answer the questioning eyes of my children.  they know i am on an important phone call.  i wouldn't normally answer the phone with beach things heavy in our hands and feet already in flip flops.  i am a mother of five and i know better than to halt a beach bound train of children already in motion.


it isn't the worst news.  i realize that.  it isn't even bad news.  it is no news.  that's what it is.  no news.   no answer.  and i just can't quite seem to process this nothingness.   but somehow i make it out of the bathroom and we make it down to the beach.  we put our feet in the ocean and our bottoms in the sand and though the day is sweltering the boil inside me ceases.  a little.  the ocean helps.  i watch my three small ones dance in the whirl of sand and surf.  splashes of bright swimsuit and childhood light against the muted,  gray-blue atlantic.  they are tiny.  it is large.  so very large.  the largeness of it all helps in some strange way. spreads it thinner.  shrinks the size.  it is good to feel small in the midst of something so big.   i have been consumed with this cancer.  it has taken big bites out of my days and nights and self.  and i am tired of its taking.  i am tired and i want desperately to toss it into the water and watch it float far away.  but i can't toss this nothingness.  it is too empty.   light, like sand flung in the sky, and surely it will come right back at me.  i will end up with eyes full of sting and grit.  and so i fling nothing.  i toss nothing.  i hold nothing.  i, perhaps, even feel nothing.


and now it is later-afternoon and i sit here typing.  further quiet.  finally cool.  rick's meetings have ended and he has scooped up our three and taken them for a pre-dinner swim.   i pull out my no news and i have the chance to look it all over more closely now.  all scrutiny and examination, i am.   and it is now i remember my words in the previous post.  my words about waiting.  and i almost laugh.  almost.  "oh Lord, what are you up to?  what are you teaching me?  you aren't cruel.  you're always good.  so good.  only good.  where are we going with this?  and why?" always, like a petulant child with her never-ending-whys, i am.   i can't understand. and i can't pretend. and i am tired of trying.  from my balcony i can see the same muted ocean.  i am close enough to hear its water-rhythm:  the sound of the surf and the calm of the waves crashing.   loud and quiet all wrapped up in vast measure.  even larger now from my end-of-the-day place.  and there steady above is the horizon.  a two-toned line running as far as forever.   as far as my eyes can see.  and i want to see.  i am even more certain i won't fling or toss away what i am given.  even this nothingness.  nothing in me wants to be left with sand-scratched eyes.  i want to see.  i want to see where God is leading.  and even when i cannot see with my own eyes i want to see with the eyes of trust.  and isn't this faith? "now faith is being sure of what we hope for and certain of what we do not see." (hebrews 11:1).    i do not see.  i cannot.  but i want to see with the eyes of faith.  i want to trust in His seeing.  His knowing. His holding. 


God who formed land and formed waters and formed me,  He knows.  He formed all of this from nothing.   He spoke it all into being.   this ocean before me and the shore kneeling low and solid at its side, He spoke.   He spoke the firmament into place and then called it good.
 "and God said, “Let the water under the sky be gathered to one place, and let dry ground appear.” and it was so. God called the dry ground “land,” and the gathered waters he called “seas.” And God saw that it was good.  ~ genesis 1:9
and even though it began as nothing my God called it good.  He thought it and He named it and He saw it and He called it.  because my God is that big. and He is that good.  and i can know that  even this nothing-kind-of-news today is safe in His  grasp.  He is bigger than it.   bigger than my cancer.  bigger than this vast ocean.  and if He holds this wind and water, He holds me and my nothingness.  and i sit and stare a few minutes more.  closer to seeing.  i hear the children coming.  running down the hall.  heavy footsteps for such light bodies.  and i type one  last sentence and i take one more look and i though i seem to know nothing, i am certain of this:  God holds it all.  the ocean beyond my balcony proclaims it is so and the clear eyes of my heart know it so.  He holds.

  "Who has gone up to heaven and come down?
 Who has gathered up the wind in the hollow of his hands?

 Who has wrapped up the waters in his cloak?
 Who has established all the ends of the earth? 

What is his name, and the name of his son? Tell me if you know!" ~ proverbs 30:4