Just tell the truth

Welcome to my new, fancy, not quite how I want it blog.  We’ll march onward anyway.  I’ve ventured into the clearly superior WordPress world.  Anyway, welcome.  Welcome to 2018.  Here we are.  And I have some thoughts.

Look around you.  Really look at the people around you.  Your loved humans.  Are they ok?  Are they happy?  Are they fully operational?  Are they genuinely sharing with you about their life?  Or are they faking it, and just barely making it?

I’m someone who is usually pretty readable.  You can tell when I’m disappointed, when I’m frustrated, when I’m furious and the dragon that lives in my belly starts to huff and puff and eventually flies out and around Pittsburgh setting people on fire and eating them.  She is feisty.

But I’ve been unsettled.  I like many aspects of my life, but I’ve felt unsettled and quietly disgruntled.  And I’ve been brave enough to share a little bit of that with some of my favorite people.  And others who have been there at the right place and time.  And here’s what happens:  when I tell the truth, believing in their care for me, their acceptance of my “stuff” and their kindness…they tell me the truth too.  I believe we are all looking for some truth listening and some truth telling.

Some people, as the classic movie line goes “can’t handle the truth.”  I’ve learned this the hard way, and those people get the “I’m good, how are you?” treatment.  Rejecting someone’s struggle and shaming them back into ‘everything is fine” is a stinging poison that touches all of us and herds us into complacency and convincing ourselves that we are ok, our kids are ok, our relationships are ok our satisfaction with the life we’ve chosen is ok, our jobs are ok, our bodies are ok, our finances are ok, our church is ok, our mental health is ok, our spiritual journey is ok.  It’s all ok!  Right??  I’m ok, you’re ok.  Don’t think about any of this stuff too much.  Because if you do…it rocks the boat.  It rocks other people’s expectations of you.  It might require you to (gulp) change.

The question is, who do you want to be?  A person who bravely tells the truth about what is imperfect inside you and your life, and who listens without judgment and embraces the struggle and disharmony of others…or the person who says that everything is great and accepts only a similar response in return.

Not everyone can be a truth teller, and no one can be a truth teller all the time.  But my direction, for myself, is clear.  I’m seeking out truth tellers and truth listeners.  And I’m telling myself the truth, too.  My word of the year is authenticity.  And I’m embracing it with wild courage.

I don’t know how to fix much.  But what I do know how to do is create safe space for real conversation.  Come sit next to me, and let’s talk.  Let’s be honest about how things are going.  Let’s say the things out loud that we are scared to say.  and trust that there is no judgment or future gossip.  Let’s engage in authentic conversation where we don’t have to impress or convince or deny.  So, come on over.  I’m pretty much never more than ten feet away from coffee or a decent Malbec.  Cheers to authenticity.

Get this book

People often ask me what to do for people who have cancer. I have written about this several times on this blog. But I want to add a new suggestion. This little book is awesome. 

 

 

 

 

I’m embarrassed to say that I can’t remember who gave it to me. Chemo brain is a real thing. Seriously, it is called post chemotherapy cognitive impairment and it can last pretty much forever. I remember lots of things perfectly fine, but certain things are just blank. So, whoever got me this book, thank you! I really like it. I don’t usually have high hopes for small, cute looking, spiritual themed books. Which is kind of silly because some of my favorite books have fit that description. But there are a lot of dumb ones out there.  With pat answers and encouragement from writers I can’t relate to.  

 
Again, I wasn’t expecting much. But this book has brought a tear to my eye each time I’ve picked it up. I am only 12 pages in, but this lady knows what’s up.  One of her first pieces of advice was about what to do when someone comes up to you and starts to tell you a story about someone they know who had your same kind of cancer.  And you start to tense up because you are concerned about how you’re going to react when they tell you that they died. Just the fact that she would bring that up makes me know that she has been through what I’ve been through and she has thought about how to handle it well. 
 
Anyway, this book is great.  Get it for someone you love who has been recently diagnosed.  

Two dragons

I had a CT scan on Friday.  We had a really busy and fun weekend, during which I ran my best 5K race ever.  I’ve never run a 5K in less than 40 minutes, and my time was 38:41 with a 12:27 pace.  I know it isn’t fast, compared to most runners, but, honestly, I was thrilled.  My follow-up doc appointment was scheduled for Monday.  I didn’t have any anxiety (or scanxiety as we cancer fighters call it) all weekend, but for some reason, an hour before the visit, I started worrying and couldn’t stop.  When we got there, I noticed that they called every person back before me, even if they had arrived after.  I started pacing, near stroke-level panic, realizing they might be putting me as Dr. Mehta’s last appointment.  This could all be a total coincidence, but there was something I was sensing that turned out to not be totally unfounded.

Being a cancer patient does all of these strange things to you, and one of them is it creates this extreme, urgent desire to read people.  You read everyone from the receptionist to the lady who takes your vitals to the nurses, and most definitely the doctor.  I wonder how, when they teach about bedside manner in medical school, how they handle this.  Do they tell the prospective doctors that patients waiting to hear news will be filled to the brim with anxiety and reading every facial expression, every word, interpreting every delay, every bit of data.  She looked at me sympathetically – something is wrong!  He frowned at my results – I’m dying, like, tomorrow.  I even read the “system.”  They didn’t email my blood work – I definitely have diabetes, leukemia, high cholesterol and zero white blood cells.  Often my interpretations end up being wrong – at times, what I thought was a sure sign pointing toward bad news was nothing more than a computer glitch.  But not this time.

He gave us the good news first.  Liver looks great.  Abdomen looks fine.  Tumor markers are very low.  But in my lungs, a previously unchanging nodule (a normal thing that lots of people have) changed.  In 6 months, it seems to have grown from 4mm to 7mm.  My doctor said he really doesn’t think it is cancer, but because of my history we have to be sure.  He said he could send me for biopsy but that it really is so tiny, it would be tough to get a piece of it and a lung biopsy is no picnic.  He mentioned a chest tube and I started getting tunnel vision and feeling light headed.  Now, don’t get me wrong – I will do whatever has to be done.  What. Ever. Has. To. Be. Done.  I promised myself I would never shy away from a procedure or treatment no matter how much it would hurt or scare me.  Frankly, I’m not scared of anything like this.  I won’t like it.  I might even hate it.  But I do what it takes.  I’m not going to get sicker because of a lack of courage.  Now…given the honest recommendation of my oncologist to wait, I’ll take it.  We’re waiting to see if it grows.  If it doesn’t in two months, we’ll check again in another two.  If it grows, we’ll do the horrible sounding biopsy.  If it’s cancer, we’ll “scoop it out” (ugh) and proceed with chemo, I assume.  After all of this, he said he thinks it’s 98% not cancer.  That surprised me.  I thought we were talking 50/50.

So how am I doing?  Not great.  Not bad.  I have truly, truly been through the emotional wringer with all of this – it has this ripple effect that touches everything else in your life.  I have experienced such highs and lows through it all – I’ve felt more alive than ever in my whole life, and I’ve also felt like death doesn’t sound so bad.  I’ve felt so fully loved, so much hope, so much gratitude, and also disappointment, anger and sadness.  I’ve been shocked both by unexpected kindness and unexpected failures.  Cancer amplifies life.  Takes you soaring one day and plummeting to the ground the next.  I’m kinda beat up, honestly.

But I think the “beat up” that I feel is more the hangover that I’m experiencing from that 45 minutes in the waiting room and exam room where I knew something was wrong, and got the “bad news” vibe before I actually heard what this news was.  I suppose there is something chemical in the brain that happens – adrenaline, cortisol, something that just floods everything.  The news honestly isn’t dire at all.  As my mentor said “2%?  There’s at least a 5% chance there is something worse in my body I don’t even know about.”  That really helped me gain a little perspective, actually.  But my brain thought it was dire for 45 minutes, and it’s still there, in that “oh shit” space, even though the data says otherwise.

I dug out a Tim Keller sermon this morning, because I know I have to think my way out of this one and the best way to do that is to listen to people smarter than I am.  It was a good reminder of what I know to be true in terms of God’s goodness, His sovereignty, His purposefulness.  It also reminded me of my own responsibility in my emotional life.  There is this little fable or whatever I’ve read once or twice about there being two wolves that live inside you (I think of mine as dragons) and one is anger/frustration/unhappiness/bitterness and the other is joy/contentedness/peace/love.  They fight for control.  Which one wins?  The one you feed.

The bad dragon loves self-doubt, fear of failure, unforgiveness, performance-based acceptance, blame and shame.  I need to feed the good dragon with knowledge of God’s love and care, restful, energizing experiences, wholesome food, tough exercise, you tube videos of news bloopers, grace, people who are encouraging, fair, loving and consistent, healthy vulnerability, challenges I am capable of meeting, good books, pleasant company and prayer.  Help me feed the good dragon, ok?

 

grace for them

 


So I was feeling a little down today.  I am recovering from my last chemo session, but it wasn’t about that.  Do you ever go on Facebook and see something that someone has posted that either isn’t very nice or comes across as passive aggressive?  And there is this little dirty, mean, self-hating part of you that thinks it might be about you?  Maybe once, years ago, someone suggested that you might be a little selfish or a little controlling or a little arrogant or a little bit of a failure.  And then, long after, you see this post about how horrible selfish or controlling people are, and you wonder if they are talking about you?  Most of the time, I scroll right past that stuff without a second thought.  But now and again, that ugly little part of myself takes pause and wonders.  And worries.

I feel misunderstood sometimes.  I think sometimes my directness, confidence and drive to get things done steer me into this category that some people just don’t know what to do with.  Lots of people enjoy these aspects of my personality and respect them a lot of the time.  But sometimes, my drive, my passion, my unrelenting certainty presses against someone else’s insecurities and it just pushes their buttons in the worst way.  I inadvertently become a villain.  And it always mystifies me.  I think I’m encouraging someone and it comes across as pushy and self righteous.  I think I’m showing someone an important truth and they characterize me as having an agenda.  I think I’m listening carefully and they think I don’t care.

So I saw this annoying thing on Facebook, and the story I made up in my head was that it was about me.  And I saw who “liked” it, and it felt like a chapter out of Mean Girls.  And my first response was that I was hurt.  And my immediate follow up response was all of the reasons why these people mean nothing to me and do not get to hurt me, because they are nasty jerks who are so insecure they have to post these little thinly cloaked insults that they aren’t brave enough to say outright.  And my next response was frustration.  Being misinterpreted is just the worst.  And I sat in that misunderstood feeling for a while.

And then I went to my bookshelf to find a book to start, to take my mind off of this crap.  And a great book that I deeply love, Walking with God through Pain and Suffering by Tim Keller literally fell out of the bookshelf, fell open and a greeting card skidded across the floor.  It was a card from a good friend and coworker.  And if ever there was a physical piece of evidence that some human in this world understands me and knows where I’m coming from, it was this card.  I read it.  It made me cry because it was so, so, so needed right then.  The printed, sentimental words that the card makers published, and the messy handwriting, scrawling across every blank square inch of the card – words that comforted and healed.  Words that reflected that sometimes my very best self does come across and is accepted and acknowledged and appreciated.

I’m misunderstood sometimes.  By some people.  And other times I am perfectly understood.  By some people.  That’s the reality  And that’s ok.  I don’t need to be understood by everyone all of the time.  I’m not here to make everyone happy or make everyone feel perfectly at ease and comfortable.  I’m here to be me.  I’m here to be Jessi in all the wholeness and fullness with which God has created me.  Some of me is messed up and still a work in progress.  Some of me is perfectly effective and functioning exactly as I should.  Some of me is half formed and half baked and half torn apart.  Some of me is healing.  Some of me is growing.  And it’s ok if it comes out wrong sometimes.  That’s what grace is for.  And if you don’t have any grace for me today, that’s ok.  Because God’s got plenty.  And sometimes He doles it out in the form of a 6 month old greeting card.  

Pretty much, we’re all doing just about the best we can.  At least, most of us are.  At least, the people that deserve to matter to us are.  Keep doing the best you can.  I will, too. Because even if that post is “about us,” it’s not actually about us.  It’s about whatever broken, half baked piece of that person is dripping out today.  And we can be better than that.  We can have grace for them.         

2015 – a year in review

2015 began without much fanfare, although my cousin got engaged to a lovely woman I can’t wait to be cousins with.  A few weeks into the new year, my oncologist suggested we remove Mort the Port.  I was thrilled, not because I hated Mort, but because I felt this meant that my doctor felt that the cancer would not make a comeback.

Mort came out, and the cancer came back.  And while I can’t get away from the reality that cancer has defined most of this year, there have been many amazing, difficult, interesting things about this year, cancer related and otherwise.
I visited with the Cape family who live far away
I trained for and completed a triathlon
I had three surgeries and a biopsy
I went to California for work and saw good friends
My daughter started first grade and is having a great year
I get sores in my mouth from the chemo that make eating a chore
I grew closer with new friends, old friends and family who have helped take care of me
I lost some hair but not all
I wrote a book (publishing, pending)
I throw up from time to time
People I’ve never met prayed for me
People I know well pray for me daily
I’ve had 9 rounds of nasty chemo
I had a group of amazing friends come and visit me just because they love me
My fingernails and toenails get infected from the toxins in chemo
The mayor said he’s proud of how I’m fighting cancer
I swam in the ocean with my little fish of a daughter
I held my husband’s hand on the beach
I have a really yucky skin rash
People have sent me the most incredible, generous gifts and care packages.
I love my life and I’m grateful for this year no matter how hard it’s been.
I will continue this fight into 2016 and, God willing, triumph for good.  My mightiest prayer is to never have cancer again.  Pray with me?

 

 

 

 

A year ago, tonight…

I was thinking about going to bed early because I had to get up so early to get to the hospital to have major surgery to have my tumor and about a foot of my large intestine removed.  I didn’t know at all that it was cancer, not to mention an aggressive, advanced stage cancer, but I was worried it might be something at least a little bit bad.

I was actually more worried about the surgery.  Funny how, now, that surgery seems like a walk in the park compared to the bomb-drop of my diagnosis and five months of chemo.

That surgery started this journey.  This tough, scary, exhausting journey that has taken so much time, energy, money, emotion, comfort and the general sense that all is well.  And, that surgery is part of what’s kept me alive this past year.  So I think of it with mixed feelings.
Anniversaries can be tough.  Tonight, I’m a little unsettled.  Some days I almost forget I had cancer and other days, it seems to be lurking nearby, waiting for my guard to be down so it can pounce.
But I’m also grateful.  Awed by the kindness of my family and friends.  Humbled by God’s grace.  Thankful for the gift of the past 12 months.  Glad to have been blessed with a tenacity and grit you can’t get along an easy, uneventful life path.  I’m a little aggressive sometimes.  Sorry.  I learned to fight with all I’ve got and fight to win.
It’s ten days away from the anniversary of my diagnosis.  Interestingly, in between today and ten days from now marks another anniversary.  18 years ago, in a dorm room at Ohio University, I made a conscious decision to follow Jesus.  Exactly half my life.  I’m so, so thankful for the people who had a part in that.  It’s fun to think of you as your younger selves.  I long for the innocence of those days!  When the days stretched out so far, and there was enough time to do almost anything.  And we loved each other and were in such fresh awe of God’s love for us.
I’ve needed every minute of those years of growing faith, built slowly, brick by brick, each one added by moments of love, grace, forgiveness, lessons learned, reconciliation, prayer, worship and serving together to get through the past year.  What a journey.
So thankful to have been anchored firmly in faith of God’s power and goodness.  It overcomes so much.  Thankful that light chases away darkness.

 

 

The NEW new Normal

When I started this blog, my first entry was titled The New Normal

I felt it was necessary to acknowledge and even declare that we were in a new situation – that life as we knew it was a thing of the past and we were in a brand new chapter. Well, here we are again. While I won’t feel comfortable saying I’m “in remission” until my scan in a couple weeks, let’s just assume that I am and that is the new state of affairs. No longer a cancer patient, no longer a cancer warrior actively fighting cancer – but rather a cancer SURVIVOR.

In some ways, this new era is trickier than the previous one. On one hand, you want to shout from the rooftops ” I BEAT CANCER!” and “GOD HEALED ME!” and “YOUR PRAYERS WORKED!” and “MODERN MEDICINE IS A MIRACLE!” and “MY DOCTORS ROCK!” And on the other, you want to whisper “but it might come back.” When you’re battling cancer, you’re a street fighter – you’ve got your enemy right in front of you where you can punch it square in the face – you KNOW what the problem is and where it is. You can see it. It’s big and bad and ugly and it scares you, but you have a target to hit. In remission, you are tempted to see yourself moreso as walking through the streets at night with a hoodie pulled down over your face, ducking your head and nervously glancing over your shoulder, flinching at every skittering leaf and alley cat.

I don’t want to be that. So I’m not going to. And this blog is now going to be the story of how I figure out how. How do I parent and work and be a wife and a friend and daughter and mentor and mentee and human SURVIVOR that is vigilant and responsible about my ongoing health, without living each day terrified of it coming back? I’m not sure yet. But I have some ideas – and I’m taking this bull by the horns and wrestling with it. Sorry for the mixed metaphors – but that’s how it is in my head for now. Mixed.