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Here We Go! Surgery Monday.

Tomorrow night or Monday morning, however you think of 3am, I will get up, shower with this weird stinky pink antibacterial soap, leave the house around 4am and arrive at the hospital to have one and a half significant organs removed. 

My life is so weird. 

I remember, recently upon getting this diagnosis, saying to Kevin “Well, it’s never going to be normal again.”  These are true words.  But they are not bad words. 

When I said “normal” what I meant was the idea of waking up in the morning and going through my day without worrying about something major and specific.  Sure, we all worry our child will run into traffic or that argument with a friend won’t get resolved.  But there is this “normal” kind of living that you do when you feel you have control.  You have a general idea of how the day, the week, the month will go.  You confidently plan activities for next summer without wondering if you will be healthy, functional, alive?  You have a sense that all is well, nothing terrible is about to happen.  Life feels pretty predictable. 

When you have cancer, or had cancer that might come back, you live with this sense of dread.  Is it coming back?  Will it be worse?  Can I beat it again?  Cancer is so disruptive and unpredictable.  Do you know how many tests they do?  SO many!  And one wrong number – one field in a huge spreadsheet, can throw everything off.  And every single thing you do (port placement, chemo, surgery, doc appointments) requires so many things to go just so.  And organizing your schedule around it while trying to minimize the impact on everyone around you is just so incredibly difficult and stressful.  Cancer makes life so darned unpredictable. 

But the truth is that none of our lives are predictable and the control we think we have, well, a lot of it is an illusion.  Cancer (and other hardships) just pull back the curtain a little bit. 

I just heard from a friend that her good friend’s husband passed away very suddenly from a heart attack.  No warning.  He leaves behind a stricken wife and a handful of stunned children.  It sounds like no one saw this coming.  Getting the rug pulled out from under you.  It feels so unfair and so wrong.  We turn away from God entirely, or, toward God in rage, in total despair.  

How. Could. You?  
Why us?  Why this?  Why now?  We rattle off our good deeds and offer them up feebly.  Wasn’t this enough?  What did we do to deserve this?  Is it because of that terrible thought I had?  That argument I didn’t resolve?  Was I not grateful enough?  Selfless enough?  I didn’t pray enough, did I?

But God is not much of a transactional God.  There was one significant transaction to wipe out the rest.  We sin.  Jesus went to the cross to wipe out all of those sins for those who believe.  They are gone.  Erased.  You don’t have to pay for them again.  Scripture makes this clear.  God does not punish us for a debt that has already been paid in full.  He is not up there in the clouds doling out punishments to smugly teach us lessons.  God is not mean. 

So, what is He up to?  Well, I wish I could explain it in a way that made everyone feel better but I can’t. I have a few things to share that might help a few people a little bit. 

Grief is real and big and purposeful.  One must walk through grief.  There is something about grief that changes us, makes us deeper and realer and more whole, eventually.  Even though it feels as though your very heart and humanity have been forcibly taken from you.  But grief is functional, and it must be experienced.  No shortcuts.  I believe this may be part of why there are not easy answers.  We simply must  move forward through the very human experience of grief.  It equips us.  Strengthens us.  Makes us softer, wholer and better somehow. 

No way over, under or around.  Just…through.  However, there are some things to consider as one walks through grief, that I believe are useful.

We don’t know what God is up to in the short term.  We just don’t.  Romans says “Do not conform any longer to the patterns of this world but be transformed by the renewing of your mind.  THEN (emphasis mine) you will be able to test and approve God’s will.  His good, pleasing and perfect will.”  Ok, so what this means, I think, is that once we ditch our worldly ways of thinking and doing, we are much better at seeing what God is up to.  But most of us are a long way off – still early on that journey of getting our minds renewed.  But.  If you really want to understand what God is up to, focus on Him and His ways.  Seek to understand His character and how He moves.  If you’re watching trashy reality shows and reading crappy romance novels and you’ve let yourself get brainwashed into expecting certain kinds of neatly wrapped up happy endings, you’re on the wrong track.  I love movies and books and all kinds of entertainment – I just have to make sure I don’t let those fairy tales strongly guide my expectations and how I think life works.  In the Hallmark movie, they always get together in the end, the kid gets rescued and they find a cure before it’s too late.  Not so, at least not always, with life.  In the meantime, while still fledglings at the whole figuring out God’s will thing, we simply have to trust Him.  I pray each night that I could somehow “Trust Him more each day.”

One path to trusting God more is thankfulness.  Grief and gratitude (for the grieving) or fear and gratitude (for the worried) seem like unlikely neighbors.  But they can be.  I can tell you with deep confidence that finding something to be grateful for, even the smallest thing to start with, changes your mindset.  Gratitude begets more gratitude.  It is easier to trust God when we intentionally reflect on all of the blessings we have received.  It seems weird, but I have worked myself into a near gleeful frenzy when I’ve started thanking God for everything I could think of.  Sometimes it happens differently.  For example, I love receiving thoughtful gifts, especially unexpected ones.  When I come home to a box or two on my doorstep addressed to me, and I tear through them to find fun Wonder Woman accessories or soothing spa products or a gift card somewhere fancy I’d never buy for myself, even if I’m worried about test results or feeling discouraged, those gifts can just lift me out of my funk and remind me of how much I’m loved and how God cares for me through other people and how thoughtful and generous people can be, how fun can burst out of nowhere, and how incredible and wonderful my life is, and all of a sudden this Stage 4 cancer patient feels on top of the world.  Because I feel thankful.  Gratitude lifts us up, toward God.   

God is in it for the long game.  What happens short term is PART of the bigger picture, but you may not see or understand how it all fits in.  Scripture clearly tells us that He works ALL THINGS for OUR GOOD if we love Him.  I’ve seen some of that.  There are incredible examples of God using evil for good.  Tim Keller says that God gives Satan (and us, our bad choices, etc) just enough rope to hang himself with.  I love that.  Think of Job.  All was taken from him.  He wrestled with it, debated with his friends, argued, even with God Himself.  God never gives Job the WHY but he does restore him and bless him.  This story has impacted millions of people for thousands of years.  Many a sufferer has gone to that Old Testament book in a desperate state of grief, anger or despair and said “OK, help me.” 

Imagine if my story, of struggling with cancer, made it into the volumes of history because I had a willingness to trust God and not a need to know why.  What if people, years from now, after the zombie apocalypse, went to this blog to read about how Jessi Marsh of ye old Monroeville, handled her suffering?  They probably won’t, and that’s ok – I don’t aspire to be Job.  I’d rather be known for doing something cool like inventing a teacup pig that would actually stay tiny so you could carry a wee little pig around with you wherever you go and let him out to run around the coffee table and teach him little tricks!  Heeeheeeee!  Or, you know, like, ending homelessness, than being known for suffering well (wouldn’t we all??)  But our stories, how we suffer, are important.  I hope to be authentic, to share my moments of doubt and fear (had a BIG one last week when an EKG came back abnormal.)  And share my sincere, honest hope in Christ.  My belief that God is WAY bigger than all of this but personal enough to look at me with love and care when I hurt and when I’m scared.  He reminds me that there are major challenges ahead, scary moments, physical pain, uncertainty, sadness, loss and strife.  But it’s my path, for my adventure.  And he is the activities director, the captain of the boat, the pilot of the plane, my doctor, my lawyer, my Sherpa, my advisor, my battle strategist and my friend. 

I love in The Lion, The Witch and the Wardrobe, which Cass and I are currently reading, when the children ask the beaver if Aslan, the lion is safe.  The beaver says,  “‘Course he’s not safe.  But he is good.”

That’s God.  Not necessarily safe.  But definitely good. 

So, that’s how I’m approaching this surgery.  It’s an adventure.  I hope it all goes very smoothly but it might not – but I will make every effort to approach any bumps in the road with the mindset that God is always good.  He loves me more than I could dream, and He’s got an incredible story in mind for me that is slowly being revealed.              

 

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The case for over-sharing

Last week, Mark “Facebook” Zuckerberg announced the happy news that his wife is pregnant, along with the normally private information that the couple had endured multiple miscarriages.  With that announcement came a flood of empathy and support and appreciation.

Sharing certain things is difficult.  Especially when the news is so closely related to your body.  Some things are so personal that many people receive difficult health news and immediately make the decision to keep it private. I completely understand this.  In early 2009, during my pregnancy with Cassidy, I was diagnosed with gestational diabetes.  At the time, my response to this news, in terms of emotion, was SHAME.  I felt I had failed my little fetus.  I completely took responsibility – one of the many downsides to being natured and nurtured into leadership tendencies is that you tend to take responsibility for just about everything.  I was certain I had eaten too much Goodfella’s Pizza in college (holla, Bobcats!) and I was paying for it dearly.  Whenever I thought of it – pretty much constantly because I had to test my blood sugar 4 times a day – I would shut my eyes and bow my head in shame and think “it’s my fault.”  So, my shame led me to what we have constructed as an acceptable euphemism: privacy.  Hey, there is nothing innately wrong with being private – but we would do well to examine our reasons for desiring privacy.  In my case, it was because I was totally embarrassed and ashamed.  I assumed that anyone I told would nod knowingly and judgingly and condemn me for every carb they had ever witnessed me enjoy.  I shielded myself from that by telling very few people about my diagnosis.  As time went on and keeping it secret became cumbersome, I found a level of comfort and reduction of shame through the sisterhood I found in online communities of ladies with the same issue.  That, along with my natural extroversion, allowed the news to creep out timidly.  Typically I would follow the bomb drop with statistics about how common it is and how even skinny people get it and how well I was managing it through a heroically strict diet.  I steered people toward admiring me for eschewing sugar during pregnancy, desperately managing their ideas about me to protect myself from the judgment I anticipated. 

Years later, with that far in the rear view mirror, I talk easily about gestational diabetes.  I have grown in a number of ways that allow me to feel less concerned about that judgment, less bothered by those kinds of worries.  I am a bit gentler with myself and others – by the way, I have found that the gentler we are we ourselves, the gentler we can be with others – and I have seen plenty of bad things happen to good people, both as a result of their own choices and a result of the strange non-formulaic, apparently senseless ways of this world.  Grace is in order in both cases.  And if you don’t want to give me grace and prefer to judge me, I can see now that is way more about you than it is about me.  You and God will have to work that out, and it will probably be quite beautiful when you get around to it. 

I share about cancer freely.  I am sure some people have thought what I might have done to give myself cancer.  We think that way if we are afraid and want to feel sure it won’t happen to us.  The person with lung cancer smoked – whew, that won’t happen to non-smokers, so it’s ok.  The child drowned because the mom let the 10 year old babysit -whew, I would NEVER do that, so it’s ok.  Apparently senseless, non “obvious fault” tragedy is so much scarier.  The bowling ball rolled out the window and hit him on the head and killed him??  He was just WALKING ALONG?  Wait, I do that every day!  That might happen to me!!!!  Arghghghgh!  I also know some people don’t think like that at all.  Naturally empathetic people just care.  They just want to care for and comfort you.  They don’t care if you have HIV because you had unprotected sex or Hep C because you used drugs.  They just feel for you. 

That fear of judgment isn’t the only thing that prevents us from sharing.  Some worry that others will see them as weak.  Many people confide in me these days and a friend recently shared a cancer diagnosis.  This person didn’t want to be seen as incapable of doing their job.  Another person in a similar situation didn’t want the fuss and attention.  Yet another person didn’t want his family to worry.  I do understand these issues.  But I’m here to tell you there is something else to consider. 

My cousin recently called to tell me about how much he enjoyed a recent event where military and other people shared stories of overcoming insurmountable odds and thriving after experiencing trauma.  They did so with grace and humor.  It clearly inspired the audience deeply.  Those people chose to overcome their fear and value of privacy for the purpose of encouraging others.  Everyone is going through something.  And most of our world’s big problems (divorce, death of a loved one, a scary diagnosis, severe injury, intense failure) feel huge and solitary.  We feel alone in our situation.  Until someone else bravely shares.  Our tight, closed, scared selves relax a tiny bit and we hopefully whisper “You, too?” 

Lost babies is one of the most taboo subjects around.  I hear there is an underground network of people who privately rush to the sides of the recently bereaved.  I am thankful to not need admission to that club of support, but I guarantee you, there is love to be found there that exists no place else.  I know Mark Zuckerberg isn’t everyone’s favorite visionary.  But his vision is clear – that social networks operate to bring people together and inspire openness and collaboration and progress.  He took it straight to the heart with this one and I’m joyful on behalf of those who have felt they were required to grieve privately.  Many will choose the same quiet grief, even now that the door has been blown open.  But those who have longed for a bigger space to walk through their sorrows – Mr. Zuckerberg has knocked down some walls, put in a coffee shop and installed Wi-Fi.  He has invited you to join him in that space. 

My hope is that my decision to share openly about cancer has made it a little easier for someone else.  I share to create a bigger space, to make more room.  You can totally hide by yourself in the dark and deal with it on your own.  I judge ye not.  But if you want to come on out, there is plenty of room.  And pizza.  Even though I only eat that very occasionally now because it causes cancer.  Just kidding.  Like 97% kidding.  It’s actually aspartame.  Or Kenny G. 

 

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Holy suffering, Batman!

So, the past week? 
That sucked.  Really. 
First, we had Monday, the day of infusion.  I tend to feel great when I go to the clinic
because it’s been a while since they filled me with poison.  So I show up optimistic, energized, ready to
go.  The infusion was fine. 
For those not familiar with how the process works, I’ll give
you a quick run down.  I have a medi-port
device, named Portia, that is installed in my chest.  It is accessed by a big scary needle and
fluids can be administered through it and blood can be taken from
it.  It’s pretty nifty and saves you from
ruining your arm veins.  Upon arrival, I
am weighed, and vitals are taken.  I am
weighed each time because the volume of chemo you are given is based on your
weight.  Blood is taken and a couple of
quick tests are done while I am administered pre-meds – steroids, hydrating
fluids and anti-nausea medication.  This
takes about an hour.  Then I am hooked up
to Oxaliplatin and Vectabix, two chemo drugs that are given over several
hours.  At the end of that, I am given a
bolus (injection) of 5-FU (yes, it’s really called that) and then hooked up to
the Wonder Woman Power Pack (aka Fanny) that I wear home.  This contains more 5-FU which is pumped into me for 48 hours.        
During this time, at the cancer center, I visited with nurses I know, showed off
my latest Wonder Woman accessories, read, rested, watched funny YouTube videos.  I even did a conference call with my staff
via FaceTime.  Ah, technology.  After, Kevin and I had lunch at Panera, stopped at Old Navy to
buy some new “visiting jammies”  (it’s
important to have decent lounge-wear when people stop by often as people do
when one is ill.)  I went home, took it
easy, did a little catching up on work and felt mostly ok. 
Wobbly, but ok.  Wobbly is the
name I give to the feeling that sets in once chemo has been administered but
hasn’t yet unleashed its fury.   You feel like something is off, your brain isn’t
sharp, you feel slightly queasy and a little tired.  The next day and a half, I was mostly getting used
to lugging that fanny pack around. 
Tired, uncomfortable.  Then the
heartburn of an angry dragon set in.  This was a
new sensation – burning from my belly, literally up to my ears.  I looked it up and that’s a thing – burning all
the way up into your Eustachian tubes. 
Ugh. 
Wednesday I got unhooked from the Power Pack and was
administered more anti-nausea meds and a prescription for heavy duty heartburn
medication.  The heartburn
persisted.  I dragged myself into work on Thursday to attend our Day of Hope picnic.  Familiar faces and an event celebrating God
on the North Shore lifted my spirits even though I felt pretty low,
physically.  I felt like I was literally dragging myself around,
wondering if people could tell how I was only about 50% sure I wouldn’t vomit
right there in front of the crowd.  A
homeless man spoke to me as I passed by and said “Ma’am, you look like a
princess.”  I looked around to see if he was really talking to me, and when I confirmed that, I smiled and said to him very genuinely “Sir,
you have just made my day.” 
I came home and made dinner and the efforts of the day just wore me down.  Just as we sat down together, I got so sick I couldn’t eat it.  What a shame!  I had three bites of a delicious meal and my body just shut down.  This was very discouraging.  I went to bed and barely saw my family that day.  Emotionally, this was the hardest day.  Your little girl just wants to tell you about her day and you have no choice but to be alone in a dark room and just get through it.  Your exhausted husband has worked all day and now has to handle every aspect of the evening – clean up the kitchen, bath, math practice, lunches for the next day.  This is when sadness and “it’s not fair!” threatens to take hold of me.    
Friday, I’d agreed to attend an important meeting.  I truly relied on God to get me there,
through the meeting and home.  I was glad
I went, and so grateful to get home, put my non-visiting jammies on and just
settle into a weekend of rest. 
Unfortunately, Saturday, the heartburn upped its game.  My insides felt on fire.  Nothing touched it – believe me, I’ve tried
everything from prescription meds to kimchi (which is delicious, btw!) so save
your well intentioned “Have you tried ginger tea?” for someone who has
heartburn because they ate too much Vincent’s pizza.  This is the chemically induced destruction of
the upper portion of the digestive system. 
My doc is on the case, so we’ll hopefully figure it out, but mint leaves
and popcicles aren’t going to tame this dragon, my friends. 
Sunday, let’s just say I spent more time in the bathroom
than I did for my past two colonoscopy preps combined.  Man, I don’t know what hell was unleashed on
my tummy, but you could audibly hear it churning from across the room.  Because I’m stubborn and crazy, we decided to
go to the Science Center anyway.  I can
tell you where every bathroom on every floor is.  My apologies to anyone who was there Sunday.  We came home and I laid in agony while
watching The Devil Wears Prada.  I want
to be Meryl Streep in 30 years.  Or be
neighbors with her.  We would visit over
chai tea and talk about the most wonderful things, I just know it. 
The weekend was really miserable.  Many times I lifted my eyes heavenward and
said “A little help, here?”  No specific
answer came – just the truth that only what is needed is what comes and that
which is not needed stays away.  This is
needed.  Don’t know why.  But I don’t need to know.  To say we need to know is to say we know
better than our creator, and that just doesn’t make sense to me.  He knows. 
He has set me upon this path and is deeply aware of every
experience.  He uses all for my good.  So be it, and may I be grateful
throughout. 

Today, Monday.  I am a
new woman.  The storm has quieted.  The fire in my belly has reduced to a
smolder.  I am so thankful to be mostly
restored.  And I am grateful to be able
to say I leaned in to the Lord in search of wisdom and comfort, not away in
despondent bitterness.  As John Newton
says, (something to the effect of) if we’re going to the throne of grace where sits the King of Kings, the
Father of all creation,  in search of
comfort and relief and we aren’t getting it, we certainly aren’t going to get
it from staying away.                  
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Portia the Port

So Wednesday, I went to UPMC East hospital to get my new port installed.  To my surprise, my surgeon was the same man who valiantly performed my very difficult biopsy.  As soon as we came around the corner, he said “There she is – my lung capacity champion!”  This man is really impressed with my breath holding skills.  (Is there any way I can make money with this skill?)  Anyway, I felt confident in his ability to do the port procedure, after all we’ve been through together.  Dr. Varma is a young-ish kind of cute Indian surgeon.  I like him.  Probably because he likes me – isn’t it funny how that works?  I remember telling my mom when I was little that I liked one of my dad’s friends, and she asked me why and I said “Because he likes me.”  And she asked how I knew he liked me and I said that he smiled really big and his eyes got squinty when he saw me.  I’m pretty sure the guy was an ex-con for some non-violent crimes – Well, I guess I started early believing people deserve second chances.  Anyway, I like Dr. Varma. 

Along with him came a big, bearded, shaved headed, tattooed anesthesiologist.  When I told my dad this, he made a disapproving sound, and I said “NO!  That’s good.  I was happy.  That’s the kind of guy who isn’t going to hold back on the anesthesia.” 

See, apparently when Dr. Cordaro my surgeon who put Mort in just knocks you right out.  Dr. Varma has you awake but in “twilight.”  That can mean a lot of different things from my experience.  I know that during this procedure, your arms are basically tied down – look, if you feel the need to TIE DOWN MY ARMS, then you should probably just make real sure I do not care what’s going on.  So, biker-dude anesthesiologist and I had a little chat.  And I’m happy to report, we understood each other perfectly.  The procedure began with him injecting me with some drug that starts with an F.  Maybe fluvoxa-something?.  And he said “Your cocktail, my lady.”  And then he gave me another one.  Dr. Varma asked “How are you feeling? ”  And I said “Fine now, but scared it’s going to hurt.”  He gave the ok to give me another dose.  Then he started cutting into my chest and neck, but I could not possibly have cared less.  They had a little paper sheet over my head and I stared at the blue fabric with great interest and mentally floated on clouds.  Soon, they were done and I was wheeled back to the recovery area.        

My new port and I are getting used to each other. 

She’s new.  She’s sleek.  She’s a lean, mean, chemo delivery machine.  Introducing…Portia! 

I broke up with Mort the Port at the recommendation of my oncologist in February.  The severance was quick, not exactly painless but I healed quickly.  I thought I’d try being on my own for a while.  But it turns out, I’m not cut out for port-free living. 

Portia and I – I know, it’s a new relationship, but so far, well, we just work.  Unlike Mort, she doesn’t mind if I sleep on my side.  And she doesn’t insist on bulging out quite so brashly, announcing to the world that we are together.  She’s more confident, secure in herself.  Humbly dignified.

As long as she’s not shy with the chemo nurses, I think I’m in this partnership for the long haul.  Eat your heart out, Mort.       

We met with my doctors (liver surgeon, Dr. Tsung, and my trusty oncologist, Dr. Mehta) on Friday.  Apparently my case made it to the UPMC tumor board, whatever that is – a group of specialists that discuss interesting cases, I suppose.  Dr. Mehta likes to brag about me so he told everyone about my triathlon and breath holding skills. 

We got some good news Friday.  One is that Dr. Tsung doesn’t feel that my cancer is particularly aggressive – it’s been growing slowly, he says.  I wonder if my physical activity and generally anti-cancer lifestyle have helped.  Doctors tend not to think that way, but I think you have to look at the big picture.  How can what we eat and how we live not have an impact?  I’m not saying you can cure yourself with leafy greens but it’s worth giving up the bread and cake to give yourself an edge.  Since my CT scan, I have gotten very serious about my diet.  I am actively attempting to bring my weight down to reduce the amount of fat in my liver (down 11 pounds so far!)  And I am avoiding foods that are known to be cancer-feeding.  So this means:  no sugar, no processed junk, virtually no starches (I’m eating some hummus and beans which have a little starch in them) no red meat or pork, no fruit except berries.  So what I AM eating is:  lots of fish, organic chicken and turkey, organic veggies and some strange things I’ve researched that seem to boost one’s immune system and fight cancer including:  Noni juice, a raw, organic green super food powder, lots of fresh ginger, garlic and turmeric.  The noni juice smells and tastes pretty terrible.  I figure it must be doing SOMETHING if it tastes that awful.  🙂

Other good news we’ve gotten is that I am negative for two genetic mutations that are bad.  I’m not clear on exactly why, but if you have them, your cancer is harder to treat.  So, I’m in the “best” camp of Stage 4 colon cancer patients.  This situation is not good by any means, but my spirits definitely lifted some when I heard this news.  Both of my doctors seemed energized and ready to get to work on this stupid cancer. 

We start tomorrow.  Dr. Mehta is adding a third drug to my chemo regimen.  He cautiously delivered this side effect news to me:  It’s going to make my face break out like the worst teenage acne I have ever seen.  He said “The effect varies but you need to understand, your face will not be as pretty as it is now.”  I am struggling with this for one reason:  I have always been able to decide if I want people to know something is “wrong” with me.  But between this fanny pack infusion business and my face looking like a disaster, that choice seems to be less available this time around.  It will be humbling to draw attention in this way.  But as my mom and I discussed – what an opportunity to show my daughter, who could very well have acne in coming years, how to deal gracefully with this particular life challenge. 

I’m wrestling with the feelings.  Annoyance, fear, embarrassment, worry and frustration with myself with caring about how I look.  I’ve never “gotten by on my looks” per se.  But I never really stopped to appreciate just looking “normal.”  Cancer is a thief.  It tries to steal just about everything.  Physical comfort, energy, hope, confidence.  But. 

God is in His wheelhouse right here. 

Do not conform any longer to the patterns of this world, but be transformed by the renewing of your mind… 


Beauty is fleeting but a woman who fears the Lord is to be praised.


Instead (your beauty) should come from your inner self, the unfading beauty of a gentle, quiet spirit.  (I know, I need some work here.)  🙂


Be joyful in hope, patient in affliction…


Consider it pure joy when you face trials of many kinds…


Blessed is the man who perseveres under trials…

It’s another thing to entrust to Him.  Plus, I’ll know who my real friends are, when people start avoiding me because I look like The Swamp Thing.  🙂     

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Our downfall: ingratitude

I can honestly report to you that I am doing OK. I do not feel afraid right now.  Something has been allowing me to live above my circumstances. Allowing me to live up higher and float slightly above the reality we face.  It’s not illegal drugs 🙂 or tired cliches of God not giving me more than I can handle.  It’s not a unicorn farting sparkly fairy dust or a mantra.  

It’s gratitude.  My readings and listenings and thinkings and prayings have led me to a special place of thanks.  I’m grateful.  For my life so far.  My family.  My friends. My job. The love of many.  Everything is a gift.  I’m reading this cool book that is right in line with this.  It’s called One Thousand Gifts.  (Score another one for my mentor, Lisa.) It’s encouraged me in this thinking.  
Our problem is entitlement, and not just the millenials.  All of us.  Between Hollywood, fairytales, and everybody’s Facebook highlight reel, we think we deserve a loving partner, our health, freedom from pain, a dog that doesn’t chew the couch, a DVR with endless memory, perky boobs, a sweet ride, a head full of hair and perfectly above average children.  
That’s what seems “normal” so we think we deserve at least that.  So and so has it, why can’t I?  
There are a few problems with this thinking:
-people have more problems than you think they do. Believe me, I know. Because when you have my kind of problems, people reach out and tell you their problems.  Which I love and see as a gift.  Seriously.  People have illnesses they don’t want to tell you about, pain that is difficult to share, shame that requires medication and worries that rattle them to the core.  But their family photos look sunny and fun, their smile is firmly plastered and they are deeply committed to making you believe everything is fine.  (Unsolicited advice:  Be a safe haven instead of a competitor.) 
-most of the world has nothing close to those things you think you require in order to be ok. Much of the world is inhabited by people who are not sure where their next meal is coming from, if their sister will die during childbirth, if a bomb will destroy their home, if the water is safe to drink or if an anaconda will eat them. (The last one is sort of made up.) 
If you’re reading this, you’re one of the lucky ones.  Put here by God and your ancestors hard work and decent genes.  Forget about the facelift and the $400 sneakers (unless you can have them AND truly be thankful.  Which, I think, is hard.) 

-if you feel entitled to those things, you can’t appreciate them.  And you’re missing so much!  Look around your house…The one that isn’t big enough or nice enough.  Can you give thanks for it? Try.  Your kids/spouse/brother are crazy.  If only they would just…  Stop.  Look at them.  They are so great.  Just give thanks for them. 

-perfect isn’t normal.  You know what is normal?  Some mix of monotony, love, tragic loss, fun, boredom, physical pain, pleasant enjoyment, white hot fear, depression, hilarity, relief, dullness, excitement, betrayal, surprise, anger, healing.  That’s a lot more normal than a perfect family that never has any problems.   How about we expect to have problems, small and occasionally big, and learn to respond with a thankful heart – yes, crying, screaming and such is fine for a time.  We all have to experience difficult emotions one way or another.  But there is great comfort and opportunity on the other side of that wall of fear you think you can’t get over.  There is a ladder nearby.  It is called Gratitude.

When you begin to see everything as a gift, your perspective changes.  Realizing you’ve been acting like you deserve something is a wake up call.  You’ll think “why?”  Why have you acted this way?  This entitlement?  Because you do good stuff sometimes or try to do less bad stuff, or you go to church or don’t swear or something?  That’s very common and understandable but let’s be real – it’s bad theology and simply not how life works.  Fred Rogers died of stomach cancer.  Shit happens.  To really great people.  

But there is so much hope in letting go of the entitlement. 

Your heart grows and your brain relaxes and you unclench your fists and you begin to take in the scenery a little better.  Set backs are less devastating, because…look at all of these gifts!  Maybe you didn’t get the Malibu Barbie, but there’s a freaking Cabbage Patch Kid over there!

Yes, there is cancer.  That nasty thing.  But also…

There is a friend who would move mountains.  A mom and dad at the ready.  There’s a good job.  A strong husband.  There’s your aunt who really loves you.  There’s a cold drink.  A warm bed.  A fluffy cat.  Your little girl with mischief in her eye and love in her heart.  There’s The Golden Girls when you can’t sleep.  

And if you see that there is a gift giver and He is the mighty captain of this ship, and He is big and good and generous and very skilled at steering.  Well, then you can enjoy the gifts and enjoy the ride.  




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The Waiting.

I thought I would wait to update until my doctor called to
tell me what’s up with this biopsy.  But
I realized that this time, this waiting, is worth sharing about.  I get about 20 texts or Facebook messages a
day asking if I’ve heard anything, which tells me that people are just as
anxious to hear about this as I am.  We’re
all biting our nails and pacing.  Of
course I’m the only one with the phone practically sewn into my palm (those of
you with ongoing health issues know that missing a call from your doc and the
subsequent phone tag is a special flavor of suffering that can invoke everything
from a gnawing uneasiness that gets worse each second to sheer DEFCON 1 level
panic.)  We’re all wanting to know.  We all desperately long for that miraculous
good news, of course.  And we understand
how much more likely bad news is (or even some weird, inconclusive
report.)  We understand that this phone
call will point us in a particular direction. 
One very different from the other. If the news is to be bad, we ought to probably just get on with it, right? 


This is a lonely place. 
Even as much as people reach out and make great effort to be with me in the ways they can, and I understand we are in this
together, it’s often a solitary experience.  There
are so many moments I’m alone, or even when among others, I’m alone in my
thoughts.  And I turn many things over in
my brain.  But mostly I pray.  I commune with God.  I respond to the tugs toward the kind of relating
we are created for.  Our thankfulness and
God’s reassurance.  Over and over. 


My friend likes to talk about spiritual things like the
existence of God and such with the question: 
what is this….like what is ALL of this? 
Who are we and what is our purpose? 
How does it work?  Because – that’s
what it’s really all about, right?  What
IS this?  And who ARE we?  Who made us? 
And why?  And what happens
next?  We should really concern ourselves
with these questions – and circumstances such as these (waiting for the doc to
call about the maybe cancer) brings all of these rushing to the forefront.  If you don’t know – well, I don’t quite know
how I would approach all of this.  Whatever gets you through.  But
even when you feel you know, you have to really really really remind
yourself.  A coworker recently called the
Devil “the stranger who distracts you with lies”  – now I don’t spend a lot of time studying
the character of Satan in The Bible.  I
think because a lot of Christians talk about him in this super scary, unhelpful
way, and blame him for a lot of things that are really about choices of
humans.  Satan, in these days and times
is often just an excuse.  But really…if
he is the Father of Lies, and if he seeks to steal, kill and destroy, it makes
sense to me that he would whisper lies to me, to try to take me off track.  The thoughts that enter my head are dark and
full of fear.  They are sad.  They are hopeless.  They invoke anger and ultimately a deep sense
of mistrust toward God.  “He’s betrayed you” says the liar.  Sounds like
something Satan would do.  Or maybe it’s
my own laziness.  It’s hard work to fix
my eyes on Jesus.  When I’m doing it –
praying without ceasing, writing out prayers of thanksgiving, giving my heart
over to God, reading sound biblical interpretation, spending time in prayerful
meditation, talking with people who comfort and encourage – I’m in the
zone.  The waiting doesn’t bother
me. 

 

This is in God’s hands. 
It’s in His time.  All things,
even the waiting, are for my good.  This
has given me a unique time with Him – a time to seek Him in a particular
way.  It seems you  can’t have this kind of palatable closeness
with God unless you are running to Him, full speed, desperate, totally vulnerable.  Chased by terrifying beasts.  But up ahead is the castle, and the King stands at the ready.  The gates are open just for you, and His
sword slays all that dare to harm you. 

He sees fit for me to wait.  So I wait and when the waiting is hard, because the fear builds up, I run to Him.     
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Post biopsy: shredded liver, heavy heart

My organs have been through the ringer! (Or is it the “wringer?”)

Yesterday’s biopsy was really difficult.  First, they wish they could put you under because the process is so invasive. But they can’t because they need you to hold your breath, which you cannot do if you are under anesthesia. So they poke you a bunch of times with a small needle to numb you up at the surface.  Which is nice of them.  But kind of just a formality. Because then they get out an enormous needle.  Over 12 inches long.  
My liver lesions (which sounds like a bad college band) are located in a remote area of the liver closest to my diaphragm. The first surgeon was actually not very experienced, and she was not having any luck getting anywhere near the area from which they needed to take a sample. While I was glad they brought in the seasoned surgeon whom they all referred to as “the expert”, I begin to feel discouraged, worried and afraid. Discouraged, that they might not be able to get what they needed, worried about what the alternative step might be, and afraid about how many times they might try before they decided to quit!  

Each attempt to access the liver involved this long needle. They would pierce through the skin, and slowly pop it through a space in my ribs, the lidocaine did not penetrate that deeply, so I could feel them slowly poking around.  I had to hold my breath for about 30 seconds at a time. 

It’s interesting how God has long-term plans. Who would have thought my mermaid like characteristics, developed 30 years ago, joyfully retrieving objects from the bottom of the deepest swimming pools, would come in handy at the age of 37 on an operating table?  The doctors and nurses in the room each commented on my breath holding skills in amazement. As one nurse said, “it’s one thing to hold your breath that long but another to do so while we’re putting the longest needle we have into your abdomen.” A sample was finally taken by the spring-loaded mechanism inside the needle, which makes a disturbing popping/cutting/snipping sound and corresponding sensation that could make you pass out if you dwell on it. And the doctor immediately said “dammit.”  Not the word you want to hear. The sample he got (a small worm-like piece of pink liver) was close to but not part of the lesion. He said defeatedly “I’m so sorry.  But that didn’t help us at all.”  But we were both determined.  He ended up jerry rigging the needle, removing the guide on its handle to give him three more centimeters to get further in.  He told me that at this point, we were facing significant risk of internal bleeding by going so deep, and risking piercing the diaphragm.  I asked him “if you mess up, and I start bleeding or something wrong gets poked, can you fix me?” He smiled and emphatically said “yes.”  And then he told me I would need to hold my breath and lay perfectly still for as long as he needed. I smiled, because I was built for this. I’m a swimmer. I’m an athlete.  I might not be the fastest anything, but these lungs are bad ass.

It was scary, and it hurt. It was hard to hold my breath and not react to the pressure, pushing, digging.  There is nothing like laying on a gurney, hearing uncertainty in the voices that are supposed to have everything under control.  It is truly the loneliest place I know. And I have been there a few times. These are my moments of “are you there God? It’s me, Jessi.” 

Those are the moments of discouragement. The moments of an uncertain or poor outlook. You’re walking the tight rope, and even though it’s dangerous and crazy: the whole thing is absurd!  But you’ve mastered this craziness…walking where few tread, and  you feel confident with each step, moving forward, each step sure, until a strong wind comes.  And as you start to wobble and then lean too far and struggle to bring it back to balance, you completely lose your focus.  You can barely remember five seconds ago when you felt certain.

Sometimes the wobbling lasts a moment. Sometimes it’s a whole day.  But, in my experience, it always stops. I’ve never fallen. And I know that the hundreds and hundreds of prayers of people who love me, and people who love people who love me has made all the difference. I don’t claim to know exactly how prayer works, but I can tell you that when people started praying for me in large numbers things changed. Last weekend, I was wobbling big time. And then I stopped. And I grew stronger, and I had the good sense to read what the Bible has to say about who I am and who God is. And I got stronger.  So I listened to some sermons (Tim Keller!) and read some books (Anne Lamott!  Max Lucado! Sarah Young!  And…Tim Keller!) and listened to some wise people (My dear friends who encourage me greatly) and I stopped wobbling.  

So yesterday, when I was wobbling a lot, I was able to believe that the wobbling would stop. I couldn’t stop it myself last night, because I was in pain and weak.  I got scared and cried.  But I knew that people were praying. And that it would get better. And it did. Last night was very difficult, because the pain was more than I expected. I felt discouraged and vulnerable. But I knew it would get better. The pain would subside, my perspective would improve. And it did! This morning, the pain is manageable. My outlook is sunnier. And I believe that people’s prayers played a significant role in that. 

When you see someone wobbling, pray for them.  Pray for people you love. Pray for people’s pain. Pray more than you think you should. I am understanding the power of it more than ever, and I am driven to pray more than I ever have been.  

We will have the results of this biopsy in a week or so. All signs point to cancer. Perhaps God will change the course. Please pray for that. But even if He does not, I will follow Him with joy. And pray without ceasing.  I hope you will, too. And please share this if you know someone who might be helped by this post.  

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Biopsy: punching a hole in the ribs to grab a chunk of liver

Big day Thursday.  They will insert a very large needle into my abdomen, through my ribs, into my liver, to find out if these pesky spots they found on my most recent CT scan are cancer. Man, I hope they’re not.

Getting this news was pretty devastating. But I must tell you…I trust God.  I really do. I am aware now more than ever of his amazing love for me. His faithfulness. His goodness.
I know, it’s very easy to question God’s sovereignty and goodness and love when we get bad or potentially bad news. I totally get that. But here’s the thing. If you expect God to make sense, you’re nuts.
If you’re married, think about your spouse.  Do they always make sense to you? You always know what they are thinking? Do you always agree with everything they do??  Hahaha.  Now, I don’t know if your spouse is smarter than you, and we will bypass the debate on who is smarter in my marriage 🙂 but I know that God is smarter than me. He is glorious. The nature of his glory is such that we cannot understand Him or His ways.  If you can’t even understand another human in their entirety, how could you possibly expect to understand God, and be in a place to judge whether he is good or right?  I’m not into that. I’m into trusting Him.
Here are a couple of things I know:
God has been faithful in my own life. I have had several experiences that nearly brought me to death’s door. When I was nine, my house exploded about four minutes after walking outside. When I was 18, I stupidly went surfing during the very beginning of a hurricane, got sucked under in churning waves and just when I thought I was a goner, was basically spit out by the ocean.  When I was in college my house caught on fire with my roommate and I sleeping inside it. We awoke only because of an alarm we didn’t recall setting. When I had Cassidy, I suddenly hemorrhaged so bad I almost died.  Then there was the last bout of cancer.  God has had my six every time. Sure, this time could be different, but why assume that?
I experience tremendous growth through times of trial and suffering. I have learned that you really are not much use to other struggling people if you haven’t really struggled.  But people who have suffered? Especially people who have chosen to trust God during their suffering? They know things. They are wise.  They have perspective and patience.  They are Yoda. They are Wonder Woman.
I experience outrageous amounts of love during times like this. Already people are stepping up and reaching out. Everyone likes attention. We really need it when we are going through something hard.  It doesn’t fix it but it helps so much.  Team Jessi is the best!
I’m praying to be healed. In the past I have been hesitant to pray this boldly for healing. I think it is because I have been worried that God might not answer in the way I expect, and I might feel disappointed. I don’t do so well with disappointment.  I feel differently this time. I feel confident both in approaching the throne of God boldly, and knowing that I will trust him, be thankful, and follow him even if my prayers are not answered in the manner and timing I prefer.  I can ask plainly and rest in believing He will care for me perfectly, no matter what.  
We assume we know what is good news and what is bad news. Tim Keller calls this something funny like presumed omniscience.  Basically, it is outrageously arrogant to assume that we know if A happens it will mean B. So we freak the eff out.  But.  We don’t know! It might be Q or X.  Or 7. Or nothing.  Sure, I’d love a negative biopsy and no more chemo.  But God knows what is best.  Because He knows it all.  
Look at the cross.  Imagine what they saw that day, and how they despaired as Jesus died. 
Game over. 
But really, it was the beginning of the greatest thing that ever happened. Ever.
Right now, I can tell you in all honesty that I have peace about this. I am finding that it is possible to rise above the circumstances and operate out of a different perspective.  I really want to not have cancer. But I will go where God leads.  I will go with joy in my heart.  And I welcome you on this journey.  Let’s look forward with faith, curiosity, trust and hope.  Let’s see what God does.  

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Blue Apron Review

Review of Blue Apron

I received a two-week subscription to Blue Apron as a gift.  First of all – if you ever want to give me a gift, I love “subscription” type stuff – it’s so exciting and it’s the gift that keeps on giving.  But enough about me; these are great gifts for just about anyone. 

Overall Impression:  This service is for fairly accomplished cooks who have at least an hour to make dinner and are adventurous eaters. 

Cost:  $60/weekly delivery.  3 meals included per week.  Each meal serves 2 people.  Portion size varies. 

Delivery:  Meals delivered sometime on Tuesday – the first week, it was almost 8pm when the box arrived but the second week, it had come by 4pm.  Everything arrives in one big brown and blue box.  Inside is a throw-away (or keep!) insulating material that keeps the ingredients inside cold.  Opening the box feels like Christmas. 

Contents:  Each meal has a large recipe card that explains the meal’s ingredients and has step by step photos as well as photos of what the finished product should look like.  All of the ingredients are either self explanatory (a clear plastic bag of semi-frozen chicken breasts, for example) or they are well labeled.   Spices and herbs and such are organized by meal, in a separate paper bag marked “knick knacks.”  This is real food, People.  Whole, fresh ingredients.  Very few processed items (bread crumbs, maybe?) 

Meal Planning:  We have a 5 year old who is not especially picky but was not interested in, say, cod over curried rice.  That posed a slight challenge because it was necessary for both portion reasons and food choices to make at least one additional item.  She was happy to eat the pasta dishes but since the kid can put away some noodles, I had to make extra pasta to have enough.  Additionally, we typically eat at home as a 3-person family Mon-Wed.  On Thursdays, my mother in law joins us.  Friday-Sunday we are take-out or dine-in restaurant patrons.  Blue Apron food delivery being on a Tuesday evening made the meal planning a little tricky.  I was able to use almost everything with a little creativity and some additions of salad, veggies or adding to the pasta.     

Cooking Process:  I love cooking.  I think if I was cooking for two people exactly what was in the recipes, I would have been done in under an hour.  But because I was adding and mixing and matching, nearly every meal took over 90 minutes to prepare.  That is a lot when you’ve already put in a full work day and have driven a total of 40 traffic-laden miles.  Regardless, I LOVED this part.  I was SO excited to try new recipes and use familiar ingredients in new ways.  I feel like I am best friends with arugula now!  How did I live without using capers on the regs?  Gochugaru pepper?  Yes, please!  Ginger: under utilized.  The radish: neglected!  Green onions have previously escaped me somehow.  

Examples of interesting dishes: 

Arepas de carne molida (with avocado and pickled jalapeño)

This was insanely good.  Basically you make a little corn cake and fry it, then saute seasoned beef to put on top, then add fresh avocado, sliced radishes, cilantro and this delicious, easy to make mixture of onions and jalapeños that you quickly pickle with vinegar and a little sugar. 

Fresh Fettucini Pasta

I dream of this dish now.  It’s just fresh pasta sautéed with a mix of arugula pesto (chopped arugula, lemon, garlic, parmesan and olive oil) and sugar snap peas with crushed pistachios on top.  This was super good and because of extra people eating, I paired it with seared, then baked cod and some swai fish that I purchased separately.  I will definitely make this again because it was a hit.  

I learned to make salmon cakes from a filler of salmon.  I tried steam buns for the first time ever.  Interestingly, the only cheese used in any of the dishes was Parmesan. And that was only in two dishes.  I could stand to lay off the cheddar so these were great mostly dairy free meals that didn’t come across feeling like anything was missing.  

Clean Up:  Oh boy.  I swear I used 3-4 pots/pans per meal plus numerous mixing bowls and really made a wreck of my kitchen.  It was a big mess, but worth it. 

Summary:  This is an amazing and very fun, exciting gift.  It feels like a real luxury and an adventure. 

Pros:  Minimal grocery shopping that week; getting out of your eating and cooking comfort zones; high quality ingredients; everything is pre measured when possible; real, while food; totally delicious! 

Cons:  Delivery day (maybe you can change the day…I didn’t try.)  Portion sizes are all over the place; time to prepare meals; major clean up required; too pricey for a normal practice.  No mention of organic/non-gmo in the packaging or recipes (but the web site shows that some of the suppliers are organic farms and many appear to be small operations.)

I would strongly recommend treating yourself to this wonderful service as a reward or celebration. I would also highly recommend giving a week or two as a gift to someone.  I could see how this could work on a regular basis, if you have a very flexible (high) food budget. It would probably get easier to work into your week with a little practice.

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Caitlin Jenner

It seems like the transgender thing – sudden support for this until-2014-shocking phenomenon – happened out of almost nowhere and rather quickly.  Laverne Cox’s unusual and fascinating character on Orange is the New Black emerged as an interesting storyline, the actor who plays the part turned out to be transgender and now we have Caitlin Jenner front and center.  And (breaking news) Physician General nominee for the state of Pennsylvania, Dr. Rachel Levine, is part of the transgender community. Yes, it seems like the transgender thing happened rather quickly.

Unless, of course, you’re transgender.  And have lived either as some unrealized version of yourself or have lived out loud under constant ridicule and frequent rejection. It must have seemed like this took for freaking ever.

I’m a Christian.  So I have a front seat viewpoint to the fist shaking, hand wringing, Bible beating that predictably happens in response to something like this.  They will know we are Christians by…our love?  Huh.  Not usually.

Just when the evangelicals started to chill out a tiny bit about the gays, you had to hit them with this?  Trying to wipe them out with a collective massive coronary?  Probably came close to working. 
I think about Caitlin Jenner and what it must be like to feel like your physical appearance doesn’t match what’s inside.  Of course, I don’t see the svelte creature in the mirror that my brain tells me should be there as a result of high intensity work outs 6 days a week for 3 months, but I guess it’s a tiny bit different.  🙂

Seriously, People.  If we’re sneering, especially if we’re using God as the justification for our sneering, we ought to be clear on exactly why.  Yes, I can see that The Bible has some things to say about men and women and how things should be.  And gender reassignment surgery is probably outside of what we might label “God’s best.”  But we ignore all kinds of things in Scripture that our society has, like, moved past.  Such as women not speaking in church.  Yeah, I know, in historical, situational, cultural context, it’s not as bad as it sounds, but it’s still kind of uncomfortable and just doesn’t jive with who I feel like I am.  I don’t feel like someone who should be quiet.  (Yes, sometimes I really, really should.  But mostly, not.)  I feel like a woman who was raised in a world where older women fought hard and won to secure me some rights I use every day.  I feel like a woman who can make things happen and fight for what’s good and right, even if it’s hard and complicated.  That’s who I am.  But what if I couldn’t be that?  What if I had to be quiet?  What if the me I am was continually rejected and a Bible verse or two was repeatedly thrown in my face?

I’m not crafting this little tidbit of an argument to say that Caitlin Jenner’s choice to pursue life as a woman is perfectly natural, wise and without grounds for concern.  What I am saying is this:

A transgender person lives a difficult, confusing life, even in the most supportive of families.

Not being able to fully express who you believe you are must be torture.

There is a terribly high suicide rate among those who identify as transgender.   

I am alarmed by the lack of empathy of the church.  Can we not just acknowledge the pain and confusion of one who lives this life?  Can that at least be our FIRST reaction? 

I am disgusted by people’s unwillingness to consider her brave, and with the assertion that only soldiers are brave.  That’s like saying only Angelina Jolie is beautiful.  She is.  But have you SEEN Sophia Vergara lately?

Finally, I think we need to examine our own reactions.  Are we angry?  Afraid?  Nervous? Confused?  Worried that we might relate to Caitlin a little bit?  If you really believe that God is sovereign and full of grace, then, let’s just relax, grab a cold beverage and calmly ponder our thoughts and say a prayer that we might be blessed with Christ-like clarity about this issue.  But until we get it, can we trust a big God with our discomfort and worry and get back to the business that Jesus entrusted us with of loving our neighbor regardless of the pronoun that neighbor prefers?