Tag: colon cancer

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Into the Void? Maybe not.

Sometimes when I write, I wonder what the point is and what impact the words have.  I’ve blogged for fifteen years (and wrote horrible diary entries for about 10 years before that…seriously, they are so dramatic and self-obsessed and boy crazy and just terrible) and if I calculated all of the time spent typing away, it would be thousands of hours easily.  And for what?  A few laughs, a few “likes.”  So what?

I wrote a book and no one told me that the easy part about writing a book is writing the book.  Someone has to care enough to publish you and then they have to care enough to promote your book and then you just hope and hope that your little book might somehow find its way magically to the people who will like it.  It’s a process through which I only got through the very first step – writing the thing.  It sits, like an unwanted hamster whose owner went away to college, in this laptop I’m typing at now, gathering cyber dust.  I don’t have the time and I don’t want to spend the money it would take to get it out into the world.  What I have to say can be said here.  People trickle in, 50 here, 100 there.  Hi, Friends.  Mom.  Connie.  Aunt Barbara.  Random person seeking cancer treatment tips.  Hello.  Welcome.  I’ve made peace with my little audience.  I write for people who love me, to share how I’m doing.  And I write for strangers who are scared and overwhelmed and using their fingertips on a keyboard or touchscreen, seeking answers, information and hope.  This is the hope stop.  You’ve found the right place.  It’s going to be ok.  Ok?

But even so, sometimes I feel like I write and the words fling out of me and into space, into the void, never to be reflected back to me.  That’s what we really want, as writers, right?  We need to tell the story, real or imagined, and we want it to fly out and bounce back to us.  We want to see something in the reactions of our readers.  Some writers want to get their readers to buy something.  Some want you to be scared.  Some want to make you feel sad about injustice.  Some want you to recycle.  Some want you to believe the same things that they do.  Some want you to laugh (guilty.)  Some want you to hear their story and feel compassion for people like them.  Some want to impress you.  Some want to inspire.  What do I want?  I want you to read what I write and when you’re done, believe in yourself a little bit more.  I want you to know that we can get through hard things.  That you can get stronger.  That it’s possible to survive pain and bad news and chemo.  That you can even have fun, like 98% of the time. I want to make the hard things in life a little bit less scary and a little more manageable.  I absolutely believe that if I can do it, you can do it.  I’m honestly not especially talented at anything.  I just believe in my brain and my body and my heart and I don’t give up.

The other thing I want you to come away from my writing with is the understanding that I have faith.  I approach all of this with an unshakable belief that I’m God’s kid and He watches me and walks with me with Great joy.  He has my best interests in His plans, and my only job is to trust Him.  He isn’t keeping track of my mistakes with a clip board full of wrong doings and scheming to find ways to punish me for them.  He’s cheering me on, urging me to do my best, and He’s always up for getting ice cream after the game, win or lose.  There are other aspects of God.  He is holy and so perfectly powerful we cannot bear to look upon His face.  But I am so enamored of the side of God that I am certain would laugh at a slightly inappropriate but witty and well timed about flatulence.

So, I want you to laugh, I want you to believe in yourself, and I want you to understand that pretty much everything you like about me comes from my trust that the Creator of the Universe chuckles occasionally at my antics and loves me like crazy, even when I am not especially well behaved.

Today, I got some evidence that this is happening.  I got the coolest care package from the coolest group of young ladies.  A woman who has known me since I was born shared my story from the last few years with her church prayer group, and they have been praying for me for a long time now.  One of those people runs one of the church’s youth groups for girls and one way or another she ended up sharing one of my blog posts that talked about getting through these tough things with faith, with the group.  Since then they tune in from time to time and read my stuff and talk about it.  This gives me so much joy.  I have mentored younger women since I was in college and continue to do so, most often, currently, in the form of trying to be the best boss I can to a small army of rockstar young women who comprise most of my team at work.  Helping women who I am a little further along in life than (ahem, old) is a real passion of mine.  I’ve been SO WELL mentored by the greatest women, ever.  It’s been instilled in me.  Basically, if you learn something (a skill, a process, a method, a way of thinking, a way of looking at something) what good is it really if you don’t turn around and teach it to someone else.  Sometimes there is a shortage of “the teachable” but when you find them, they are attracted to potential “life teachers” like magnets.  It’s a beautiful thing when the mentor and mentee find one another.  It usually flourishes eventually into a friendship and mutual learning – and these relationships have been some of my greatest joys.  Just about everything I know is because some smart person was generous enough to share with me.

So, to discover that I’m having an impact, 30 miles away, with a bunch of God following girls I’ve never met is just the greatest thing.  They sent me notes and the notes gave me tears over and over.  One (or several?) of them made a jar and put little note cards in it.  The top of the jar said “Who you are…” and the note cards said “amazing” and “beautiful” and “inspiring” and “role model.”

Holy cannoli did this encourage me.  I honestly had been feeling a bit down on myself, for not trying more persistently at “making it” as an author.  This picked me right up today!  I’m so full of love and joy from these notes (and the treats and sweet gifts they sent!) As a recipient of these blessings, I feel honored and humbled and invigorated to keep at it, sharing what I have to share.  And it reminds me, with great intensity how important it is for us to encourage one another.  Share with people the impact they have on you.  You’re probably sitting on a lot of unexpressed gratitude and appreciation right now.  Think of three people you couldn’t be where you are without – thank them!  Tell them how they impact you and how you couldn’t be you without them.

Cancer has given me terrible things.  But the beautiful things it has given me so outrageously outweigh the bad.  When life gives you lemons, like cancer…well, I’m Lemonscarlet, and I’ll be over here with my amazing friends, making lemonade.

 

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Q & A

I’ve been meaning to dust this old thing off for a while, and even more so wanting to switch the whole thing over to Word Press like the rest of the world, but until I get 10 free hours and 50 other things done first, here we are.

So a few months ago, my doc notified me of some funk in my lungs that he wasn’t sure was cancer.  So we kept an eye on it.  Eventually we decided we were tired of keeping an eye on it, and we thought we would crack me open and scoop that sucker out.

Lung surgery is about as icky and painful as you might imagine.  They put a camera down my throat and into my bronchial tubes and injected dye into the tumor.  Then they went in through my ribs on the left side and back.  They performed a lung resection, removing a portion around the mass and sewing it back together.  I woke up with a chest tube sucking blood and gunk out, snaking across the floor to a little plastic suitcase I had to carry with me to the bathroom.  I took one look at that thing and said “Leave the catheter in so I don’t have to go anywhere.  And can I have more pain medication, please?”

I left the hospital in a few days, stayed home recovering, staring at my cat and working from home.  Then I got a colonoscopy because, why not?  🙂  Three days later I headed to LA for a work trip and some fun catching up with friends who insist on living way out there.

I got home late last night and headed straight to the doc today to find out that the funk was, in fact, cancer.  Sigh.  This is my THIRD time having cancer.  Sometimes I honestly cannot believe this is my life.  On one hand, I can’t believe it’s my life because I’m 38 and super active and eat pretty healthy and I have cancer.  And not one of those “good” cancers that just needs to be treated and probably won’t come back.  One that keeps coming back and attacking different organs.  And on the other hand, I can’t believe it’s my life because I have persistent stage 4 cancer that keeps trying to kill me, and yet I just ran my fastest two miles of my life 2 weeks ago, had major surgery, got on a plane 13 days later, and the same day was swinging around my friend’s loft apartment on aerial silks like an acrobat.  An enthusiastic but mostly unsuccessful, hysterically laughing acrobat.

I stayed out until 1am in Hollywood at the coolest jazz club I’ve ever been to, and managed to get up the next day and make it through a full day of meetings that I actually fully enjoyed.

I’m three and a half years into this cancer experience.  (I will refrain from using the word “journey” because even though it totally makes sense and often it seems like the only apt word, I just really hate it.  You can totally use it if you want.  In fact, if you want to send me a card, good luck finding one that doesn’t have the word “journey” in it.)  Anyway 3+ years in and the third round is on.  Treatment for now is “watch and wait” but chemo may be in the future.  My goal is to get through the Spring and Summer without needing treatment and then, come September, if it’s back to the chemo bar, then back to the chemo bar we shall go.

People ask me the same few questions, so I will post them and the answers here for you:

Are you ok?  Yup.  I am.  I’m not thrilled.  I would plan things out differently if it were up to me, but that is God’s job.  Most of the amazing stuff in the Bible I would not have been able to plan out, so I leave that to Him.  I am not always happy.  I am not always filled to the brim with joy.  But I am definitely ok.  And even when I’m not, good, familiar company, delicious healthy food, a song I love, a trip to the beach or maybe a nice Malbec or Sauvignon Blanc cheer me right up.

Are you scared?  Generally, no.  Sometimes I get scared about a specific thing, like an aspect of surgery, recovery or a chemo side effect, but between prayer and bugging my nurse friends, I usually get over that stuff quickly.  As far as being scared to die, I want to live as long as I possibly can.  And I feel hopeful that it might be quite a long while.  But heaven awaits. Then the real adventure begins, I am very convinced.

Are you mad?  Nope.  Occasionally, I am mad if I have to miss something I want to do, but I have been fortunate to minimize that. I get upset if I feel like I’m letting everyone down because I can’t do as much as I am used to being able to do.  I get frustrated when I can’t be as productive as I would like to be.  I think you are only mad about this kind of thing if you somehow think that you don’t “deserve” what is happening to you.  I do not believe that challenging circumstances are punishment, and therefore the whole “deserve” it idea is very foreign to me.  No one deserves it, and yet we all do.  And, also…there is SIGNIFICANT growth and maturity and strength that comes only from suffering.  I basically don’t put a whole lot of weight to the words of those who have not truly suffered.  It’s the only way to show what you’re made of.  And it makes you tough as hell if you let it.  I don’t choose my suffering but the results of it, when faced with the proper attitude are a blessing you can’t get another way.

Do you need anything?  There is not anything specific that I need right now.  But occasionally, I let my friend, Kait, know if there is anything that would be helpful.  If you know me, you almost definitely know Kait.  🙂  For example, sometimes lending me a book is very welcome.   (I’m all set with books right now, fortunately, thanks to a few thoughtful friends.)  🙂

What is the hardest part?  Not knowing if or when it will hit again.  I struggle with long term planning.  Like…you should plan a vacation a year ahead.  That is stressful to me.  That’s when I know I’m in a different life than most people.  You don’t not plan a trip to Fiji because you MIGHT get hit by a bus.  But I honestly would not plan an expensive trip six months out.  More like…can we go next month?  Great, I’m in.  Long range planning makes me nervous.  The other hard part is people I love worrying about me.  This worrying business is endless.  They worry about me, so I worry that they’re worrying, then they feel bad that they’re making me worry.  Everyone stop worrying, ok?!  Just pray and trust God.  Seriously.
How do you do it?  I don’t know.  Focus on what’s right in front of me.  Appreciate each day.  Refuse to miss out on something amazing.  Buy every shade of red lipstick ever invented.  Basically I choose to throw myself into all that I do, reject fear, love as hard as I can and embrace the adventure. So, who’s with me?
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Healing, as needed

One could characterize the circumstances of the past few years of my life as unlucky, unfair or unfortunate.  And in some ways, they have been. But what stands out most to me is the outrageous levels of love and support I’ve received from my tribe of family and friends as well as the way God orchestrates things to encourage, embolden, strengthen and heal.  I just had a glorious overnight with Lisa Pratt Slayton, my mentor and lovely friend who has done so many kind things for me and taught me so much, and Jennifer Schlieper, my beautiful, creative, thoughtful friend who has been my truth speaker and healer many times.  These women didn’t know many months ago when this weekend of tattoos and rest was first conceived how bad I’d need it.  Neither did I.  But God did.  
I had a very hard couple of weeks recently, emotionally.  Coming down from the heightened senses of battling through chemo takes a toll. I had a lot of dark, foreboding, fearful thoughts that were quite difficult to shake or to share.  I felt like a dark cloud was above me.  I was always on the verge of tears.   
But the past 24 hours have been full of healing, hope, laughter, love, truth and encouragement.  Between the prayer breakfast – a room full of hope-filled leaders, all of the blue shirts on all of you beautiful people, the drive out of the city and through the country, the conversations of real things, the skillful hands of a top-notch massage therapist, a good night’s sleep in a cozy Inn…the cloud has lifted.  The skies are clearer.  Shalom is closer.  I can flourish again.  I even did my training run today.  Slow as molasses, but run, I did.  Thank you to each of you who had a hand in all of this.  I am so grateful.
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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?

 

 

 

 

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The best Weekend EVER.

What a weekend!

I had chemo yesterday and I am not feeling great.  But I have this past weekend to look back on to warm my heart.

Seven years ago, I was pregnant with Cassidy and stumbled across a web site called Babycenter.com  It is basically a site where you can go to get information about being pregnant and being a new mom.  You can create a profile and put a photo and some information about yourself like if it’s your first pregnancy, etc.  Then you can go into the “Community” part of the web site to interact with others who are pregnant.  You can join a “birth board” which is a group of women who are all pregnant and due the same month as you.  There are thousands of women on each birth board, and you can get kind of addicted, interacting, talking, arguing about breast feeding in public and elective c-sections.  Things can get dramatic and heated and it is in these threads that you find “your people.”  The women you connect with.  In my case, I seemed to gravitate toward funny, outspoken but sensible people.  Both the kind who were in the midst of the drama at times, and the ones who broke into those conversations with well timed senses of humor.

From those connecting moments, you got to know “your people” and would have private conversations through chat functions, and if you were lucky, like me, you got invited to private groups.  This is where the magic really happens.  I was on several private groups.  And people joined and would get into an argument and leave.  Groups would break up and regroup into smaller groups.  About the time the babies were born and crawling, things general got moved over to Facebook.  Once you’d been friends online with someone for a year, it seemed safe to let the non crazy ones into a more real part of your life.  So we moved our groups to Facebook.  Again, there have been changes, people leaving groups – I even got kind of kicked out of one once.  But what has lasted has been some of the friendships. I have met several of these girls individually, in “real life” as I’ve traveled or they have.  And it’s always been great.  No horrible “catfishing” stories of people actually being a 50 year, creepy man (this has happened, though not to us!) or someone scamming for money.  Well, I have witnessed that one but I, fortunately, didn’t get involved.

This weekend, 6 women came to visit me.  They could have gone anywhere, as the people I am friends with typically meet up once a year.  I haven’t been able to join them for various reasons including timing and the expense of travel.  But even though I haven’t been able to join them in other cities for these meet ups, this year, they came to me.  The weekend was truly epic.  We had an enormous amount of fun.  I got to show off our beautiful city.  We sang karaoke, toured the homeless shelter at Light of Life where I work.  We ate our way through the city at such places as Steel Cactus, The Yard, Enrico’s Biscotti, Hofbrauhouse, and visited other establishments such as Over the Bar and Lava Lounge.  We gave a homeless man a cannoli, We rode the incline.  We Uber’d all over the city.  We even ran into the mayor and he was nice enough to greet my friends and say nice things about me.  It was a really fun moment.

They loved our bridges and rivers, were perplexed by why we put french fries on our salads and sandwiches, were moved by the homeless shelter and were puzzled by why people wear black and gold even when it’s not game day.  They made me laugh a thousand times.  We had heartfelt conversations, took naps and walked many miles.  I felt so energized and refreshed by this visit.  These women are so funny, generous, adventurous and have bigger hearts than the Duquesne incline car.

Kristy, Jess, Barb, Nichole, Annette, Mandy – you ladies gave me the weekend of the year.  I’m so incredibly blessed by your friendships.  My life would be less full if I had never landed on the July 2009 birth board.

Here are some photos of a weekend to remember.

 

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Next up: round 4

Let’s talk about chemo. 

I get a lot of questions about how my chemo works, and since I just completed my 3rd cycle, and tomorrow begin my 4th, I thought I would explain how my customized protocol happens.  I say this out loud as an answer to a question about 5 times a day.  So, if you ask me, I’ll know you don’t read my blog, or that you stink at reading comprehension.  Just kidding.  I know, I can barely keep track of it all myself and I’m the one doing it, so if you forget, it’s ok.  I don’t mind. 

The cycle starts on Monday.  Kevin and I go to the UPMC Cancer Center in Monroeville.  We meet with my oncologist, Dr. Mehta.  He is on the young side, and the right mix of serious, funny and hopeful.  I trust him and look forward to seeing him.  He asks how I’m doing, we go over any new side effects.  This time, at tomorrow’s visit we will be having a major discussion about my nausea from last time.  I have a folder’s worth of research in my head and my expectation is that he will be very responsive and helpful.  We need to get this nausea under control. 

After we meet with him, they draw blood to make sure my levels are high enough to withstand chemo.  This is my 12th round of chemo in my life (8 last time plus the three I’ve had) and I have always been ok.  However, I closely review my own blood work and I notice a few levels that are concerningly low. We have discussed this and Dr. Mehta has a close eye on them.  After they take my blood, I go back to the room and pick a chair.  The room is open, with waist high walls and partitions.  I try to get a chair in a sectioned off area – depending on who my companion is, we can be a bit rowdy, and many chemo patients nod off to sleep during treatment.  Kevin stays with me until I get hooked up to my pre-meds and then he goes off to work.  Usually my mom comes, but if she is otherwise engaged, like watching Cass if she has the day off school, different friends fill in as chemo companion and chauffeur. 

The pre meds are dispensed via IV.  They include fluids for hydration, (basically everyone in chemo is dehydrated.  Want to be a pal?  Offer me hydrating beverages whenever you see me) steroids, (they help your body deal with the side effects) and anti-nausea medication.  This takes about an hour. 

Then, they change the bags and bring out the chemo drugs.  Oxaliplatin is the main drug for my type of cancer.  It’s side effects are primarily nausea, fatigue, hair loss and cold sensitivity and neuropathy.  This means that for a few days I can’t touch or drink cold things – it causes a seriously unpleasant sensation.  To the point that even when that effect has worn off, I get anxious, worrying that touching or drinking something cool/cold will hurt me.  I seem to be experiencing some hair loss this time.  I am losing quite a bit in the shower when I wash my hair.  I am thankful that I have a lot of hair, because it will hopefully be a while before it’s showing and I feel like I have to do something about it.  (Head shaving party?!)  It’s possible it will just thin some, so I’m not jumping the gun on this one.  But I’m watching vigilantly, lest I be that in denial cancer patient, walking around with patchy mange.  Also?  Why my head hair??  I notice my leg hair hasn’t exactly taken a vacation.  Whatever, body. 

Vectibix is another chemo drug administered via IV.  This drug causes a terrible rash.  I seem to be getting it mildly on my face and chest, but it’s primarily on my scalp.  It itches and is a bit painful.  So far, not anything I can’t ignore, but I wonder how much worse it will get.  It will be really awesome when I have to shave my head and we can then see it’s covered in a horrible rash.   Someone, please start scoping out wigs.  Something with bangs, perhaps?

Finally, we have good old 5-FU.  I hate this drug.  FU indeed.  They give me a bolus which is a syringe of it, so it comes on hard and fast, and then they hook me up to the Wonder Woman fanny pack.  I cart this large and in charge pack around everywhere I go for 46 hours following hook-up.  It’s cumbersome and makes a clicking noise about every 30 seconds.  It is always a welcome relief to get it disconnected.  But on Wednesday, when I’m disconnected, that is when the side effects really start getting bad.  Nausea, fatigue, digestive issues, heartburn.  It’s not usually all of those, but those are the ones that have given me the most trouble.  They last well into the weekend.  Sunday is usually the day that things start looking up. 

This past time was pretty rough.  The nausea really gave me a hard time.  I have a game plan for dealing with it this time, so hopefully we can get in front of it and head it off for at least a while.  If I could get one or two more days of feeling ok before the really difficult days set in, I would be very grateful. 

Generally, with chemo, the drugs have a compound effect, meaning the side effects they cause get worse each time.  But sometimes, certain effects, your body has a way of adjusting to them and they get better.  I’m hoping and praying that we don’t have all of these side effects in increasing levels each time.  But I also know that whatever comes, I am capable of dealing with it.  Prayer, thankfulness, attentive medical staff, and unflagging support, assistance and encouragement from #teamjessi is all critical and effective.  These are the tools by which cancer and chemo are overcome.   

My attitude is currently ok.  I’m having a little anxiety and discouragement facing tomorrow.  I have some prayer and some other attitude adjustment activities on the schedule for today.  Each time, so far, I have been able to rally, able to see the hope, see the need to hold my head up high, and face it square on, get down to business and get it done.  Sometimes, it takes more effort.  Or more God. 

Knowing how much people care has this magical effect on me, too.  When it is clear that someone has thought about my current situation and reaches out and does something in an effort to help, it’s truly incredible and I have moments where I think that maybe one of the reasons I am going through this really difficult time is that I never would have understood the depths of care some of the people in my life have for me.  My mom, cooking up a storm two weeks ago so that I would have organic, healthy, but comforting meals all ready to go when I didn’t feel like cooking.  A friend continually asking me what I need and figuring out that a massage gift card was the sweetest gift I could have received.  Another friend who fights hellish traffic every Tuesday to bring my family a gourmet meal from another friend who has agreed to provide it each week as long as we need it.  A friend so kind, she supplied me with many needed facial products to combat the acne/rash.  A group of friends, most of whom I have never met in real life, chose Pittsburgh for their annual gathering – I assume partly because they are dying to see America’s Most Livable City!  But also partly because I’m here.  I can’t wait to see these ladies!  Friends checking in, praying daily, offering help with Cass – heartwarming, life giving.  

It doesn’t change anything about how tough it is to get through this.  But it makes all the difference.  It balances out the pain and the fear and the anxiety with love.  LOVE is bigger.       

 

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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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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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RIP, Mort the Port

I spent the past 17 months with a compass sized contraption in my chest.  It looks like this:

That long tail thing that goes into the jugular vein freaked me out a little.  It hurt a lot when it was installed and it took some time to get used to the idea.  But I understood that it would be my chemo delivery system and I should make peace with him.  So I named him Mort the Port and considered him an ally.
I recently got the news that my oncologist doesn’t think I’ll need him anymore.  This is huge.  The idea that your conservative, careful cancer doctor doesn’t think you will need any more chemo for the foreseeable future is a big deal.  A break in the clouds.  A bright sunbeam of happiness!  
So two days ago, I went to the hospital.  And I looked like this:
And then they put me out with some heavy drugs and scraped out Mort.  So I liked like this:
Cute, huh??  So Kevin took me home and let me rest with a cat on me, like this:
I got a little more energy from snuggling with this little bug:
I got brave and took off the bandages yesterday.  Eeeek:
It’s so swollen, it looks and feels like Mort is still in there.  But I know he’s not.  It’s a new era in my journey.  So many prayers have been answered.  Since we got that awful news, literally from that moment, everything, while difficult and painful at times, has gone with perfect precision.  This blessing does not escape me.  I am so grateful.  
I met a Brazillian faith healer by a river in Oregon, who talked to me half in Portugese and half in English. (Yes, I know this sounds made up.  It’s not.)  So I missed a lot of what she said. And she said a lot of strange things to me (including the f-word every sentence or two and that dogs cure cancer) but she grabbed my hands and urged me to trust in my having been healed by God and to be fearless.  Interestingly, the same day, I went to this bakery and had a cookie so delicious I’ll never forget it.  
Live fearlessly, my friends.  

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Hope realized.

Last week I had a doctor’s appointment where my doctor analyzed the results of my latest CT scan and blood work.  He deemed my results “excellent.” Relief and gratitude washed over me.  As you can imagine, waiting for those results is maddening.  It’s like balancing on a fence for a week, being told you may not hop down.  One one side of you is a fluffy mattress, puppies, a massage therapist, a nice Malbec, endless episodes of Parks & Rec and like, George Clooney or Ryan Gosling, I mean, my wonderful, handsome husband whom I love very much.  On the other side of the fence is fire, spiky things, expense reports, your 7th grade math teacher, Mrs. McKinney, who was void of soul and mean as the day is long, humidity, spiders, pop-country music, scratchy wool sweaters, pantyhose, mayonnaise just lying around in glistening, awful mounds and a cloud of farts.  Broccoli farts.  

While on the fence, so to speak, for one week, I was basically a crazy person.  My head was cluttered with all kinds of worries.  Each day, I would have to bring myself back to sanity. I busied myself with work stuff, prayed and played a lot of Trivia Crack.

When the time came, I got tipped over into the wriggling sea of puppy kisses.  I feel like I’m sane again.  I feel like I have been given, for now, a wonderful gift.  I know it isn’t a gift everyone gets.  I know some well loved friends that are still on their journey of actively battling cancer. I know some dear people who have gone to be with The Lord after fighting a long time.  I worry that my victory, my blessing, my gift is painful to those who are missing someone whose story ended with this battle.  I am careful to recognize the need for utmost humility as I celebrate this battle won.  
Additionally, cancer never goes away entirely.  Even if it truly dies within you, you fear it’s return and who it will attack next.  
Trusting God, as always, is paramount.  I have shifted from praying for healing and am focusing on praying for wisdom.  Like serious, deep wisdom.  I can’t think of anything more important to ask for.  The wiser someone is, the more they seem to trust God.  Having that trust and understanding is more important than what the circumstances are.  You can have health, admiration, financial stability, even love.  But those things, valuable as they are, do much less to help you feel strong when you are weak.  To have peace when you are afraid.  
So Mort the Port comes out next month! This is A Big Deal to me. For one, this foreign object has been in my chest for a year and a half. It has helped to save my life. I have become accustomed to it. It makes blood draws a snap! Letting them take him out means that I submit myself to that whole vein hunting, pricking nonsense.  You get spoiled with a port.  But it’s exciting to close that chapter.  I may even have a little Bon Voyage party for Mort.  He’s been a good ally.  
I’m off to California in a few weeks and Oregon after that.  (Work trips.)  Then my surgery to say au revoir to Mort.  I’m happy.  I’m grateful.  I’m excited for the present.