Tag: remission

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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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Dealing with the weeds

It’s been a good, long while since I have posted.  That is
for a few reasons.  Primarily that since my chemo ended and my last scan
revealed NED (no evidence of disease) I have been, well, getting on with my
life.  I ran in the marathon, had my 38th birthday, visited San Juan, Puerto Rico with one of my besties.  
Life post-chemo is strange.  On one
hand, it is quite celebratory.  It’s a
gift to be done with getting poison injected into my veins every two weeks.  It’s incredible to begin to heal and feel
like myself.  It’s a relief to know that
pretty much, each day I will feel a little bit better until I’m back to
normal. 
But there are things that need to be addressed.  Shifting from survival mode back into some
version of a normal life where you live like most people do but also have to find out
whether your cancer came back every 3 months, is a very complex transition.  There are relationships that need to be
attended to – with cancer and treatment, it’s kind of an “all about me” world
that is not meant to be sustained. 
Shifting back to reclaiming responsibilities from daily chores to emotional
support of other people is both fulfilling and challenging. 
During chemo, you ignore so much. 
Basically everything.  Your routine
that keeps everyone on track, your child’s behavior, your marriage, your toenails, the health
of your friendships, your bad habits, the cardboard boxes piling up in the
garage that need to go to recycling.  The
perfect example of what I’m talking about happened when I went to unearth a
cooler from the garage and the precariously stacked mountain of cardboard
literally came tumbling down. 
Crash.  Mess.  Sigh. 
If we aren’t careful everything can come crashing down, having not
been tended to for so long.  Really need to get a pedicure on the calendar, people.  
I started my yearly garden recently.  Little seeds are sprouting and flourishing,
but all around them, weeds threaten to choke them.  I find myself in a daily battle, pulling them
out at the root, protecting my tiny seedlings. 
Why do the weeds grow so fast and strong and tall while the snow pea
seedlings need so much care?  I don’t
know, exactly – I’m no horticulturalist; I just grow a mean zucchini.  But I recognize the potential negative impact
of ignoring the garden for so long. 
My life garden has more than a few weeds taking over right now.  And it needs attention.  I can’t be sure, but I think it would be
easier if I’d had the kind of cancer that tends not to come back.  I could just deal with the trauma I’ve
experienced and move on.  But this cancer
lurks.  It hides and then pounces, making
another go of taking me down.  It almost
doesn’t seem worth the trouble of pulling out the gardening tools. 

But, in Christ, we have hope. 
So much hope for so many things.  There
is hope that I’ll live plenty long enough to completely screw my life up 🙂 so it
seems sensible to put in the effort required in order to avoid that.  I want to be my best self, be the best mom,
the best wife, the best employee, the best friend, the best version of myself I
can be, no matter when my expiration date is, or if or when I’ll have to fight
this monster again.  In fact, should I
have to fight again, I want to be my best self to be ready. 

      
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Return to (sort of) normalcy

About 6 weeks ago I had a CT scan that showed no changes – NED which is cancer talk for No Evidence of Disease.  No tumors, lesions or anything funky.  For now.  This is great news.  It guarantees nothing as far as the future goes, but it basically means I’m in remission for now.  I’ll gladly take it.

This weekend has been really nice.  We have spent a lot of time outside, getting some Vitamin D and playing and reading.  75 degrees and low humidity agrees with me.  I feel more like myself.  Today, at one point, Cass had three neighborhood friends over and I was discussing books with a neighbor who works at the library.  The sun was shining, the kids were squirting water guns.  I looked around and thought – holy crap, am I lucky.  I live in a beautiful place that has had clear blue skies for a week now – not the norm for the Burgh.  I have gotten back into the swing of things at a job I love.  And, the past few days I’ve spent time with some of the best people we’ve met since we moved here.

I was thinking back to how, before we moved, I prayed daily for almost a year for good friends and neighbors wherever we moved.  Three years later, I can honestly say, those prayers were answered better than I would have been able to plan myself.  God has given me people I can count on.  People who care.  People who step up.  People who share honestly, celebrate victories and mourn defeat with authenticity and grace.  People who encourage and empathize, use emojis in just the right way and enjoy a nice Lemon Shandy. I have always had great friends.  Lots of great friends.  And I’m full of gratitude that, while relationships I formed in high school and college shine brightly to this day, I have been fortunate enough to stumble across such funny, fun, grounded people in my 30s who get me and let me get them.

I’ve also had some success in my marathon relay training.  I spent March and the first half of April quietly panicking and thinking about what a moron I am for trying this, and how I must be insane for thinking I could run alongside world champion runners a distance further than I’ve ever gone.  But on Sunday, I had a breakthrough moment in my training.  I was on my third mile (my distance for the race is 4.2 miles) and my goal for that workout was 4 miles.  I realized, looking at my phone, calculating the distance and time that, not only was I going to make it, but my time was better than I thought.  It was the first time in my training that I celebrated as I was running and thought, maybe even said out loud “I don’t totally hate this!”  It was 80 degrees, I was running in a parking lot made of black top encircling a middle school building and a slightly shady guy was controlling a drone that seemed like it might be sort of following me.  Which was weird.  But I was happy.  Really happy.  And not scared.  And not mad.  And not sad.  I feel full of life.  I feel restored.

Throughout this last battle with cancer and my frenemy, chemo, I never lost hope or gave up or went into unbridled rage or anything.  But I’ve had a lot of difficult emotions to sort through.  And dark clouds of fear and disappointment and frustration and anger have lurked nearby and even taken up residence right above me at times.  You can’t do cancer happy and carefree.  But joy is a fire that burns within us.  Sometimes the flame dies down, but those embers never go out fully if our trust is in God.  My joy is growing, fanned by gratitude and the blessing of a break from the really hard times.  It feels exactly like crossing the finish line of a race you didn’t think you could do.  It doesn’t mean there isn’t another race on the horizon, but you can look back and go “I did that!”

Who knows what’s next?  Maybe I’ll do another triathlon. Maybe I’ll get my book published.  Maybe I’ll take up water polo.  Or something quieter like sewing or photography.  Maybe I’ll go to all of those normal doctor’s appointments I have put on hold, like the dentist.  And organize that karaoke night I’ve been meaning to.  My rendition of Shoop by Salt N Pepa is legendary.    

      

  

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Fighting Blind

Fighting cancer with surgery, radiation, chemo, etc is this whole lifestyle.  You put your head down with determination, you think positive, you deal with physical pain, exhaustion, you combat the side effects with medicine, home remedies, rest, prayer, massage, warm baths, lotions, creams, healing foods, tea.  You wish the bad days away and hold onto the good days, dreading the next chemo.  But basically, you’re getting through it.  You have a timeline.  You have a specific goal…get through the next chemo, and ultimately, get done with chemo.  You can’t wait to be done.  You’re jealous of those ahead of you – if someone has just one fewer treatment than you do, you are insanely envious of them.  Oh, to have just 3 instead of 4 left!!!

But then you get done.  And a few things happen.  The first is relief and celebration.  It is AMAZING to not have to schedule your life around chemo treatments and how your body will be handling them.  As the nausea, heartburn, neuropathy, cold sensitivity, joint pain, fatigue begin to subside, and as the nails, hair and taste buds start to grow back, you have a different feeling that can take hold.  Fear.

You’re done fighting.  Now we have to see if you’ve won or not.  And the enemy could show up again anytime, without much warning.  The future is filled with scans and blood tests and hyper vigilance.  Healthy, cancer fighting foods, exercise, stress reducing behaviors, avoiding exposure to nasty chemicals.  It’s easy to get swept away by the fear and the stress that every thing you do is either inching you toward or away from cancer.

This is the part I struggled with the hardest, mentally and emotionally the last time we crossed the chemo finish line.  Chemo – it takes quite a toll.  But the time after, it’s a different kind of challenge.

Primarily, it’s a challenge of faith.  This is where we have to just take God’s big, strong hand, and choose to let go of our fear.  All this time, we prayed and trusted Him we’d get through the chemo.  Now we have to trust that, no matter what, He’s got us.  He’s in control.  He’s all over this.  It doesn’t mean your cancer won’t come back.  Maybe it will and maybe it won’t.  But we’re called to a life of adventure, a life of uncertainty.  A wild ride of a life where we’ve handed the keys over the the Big Guy and believed this was the best way.  It is the best way.   We can’t control it anyhow, so why not just rest in the knowledge that the best possible tour guide, navigator, driver, event planner and travel companion is in charge.  Gratitude and trust can stamp out fear.  I’ve experienced it many times.  You simply can’t be thankful and afraid at the same moment.  One has to win out.  Light casts out darkness, not the other way around.

 

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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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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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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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Why I "tri."

When I finished chemo in 2014 for stage 3b colon cancer that I had been diagnosed with 5 months before, I did a lot of thinking.  I’m not unique in this.  I think a lot of people get cancer or have a brush with death of some kind, and they decide they need to turn over a new leaf, change how they live, stop doing something, start doing something, repair a broken relationship or begin living more gratefully.  You know, don’t sweat the small stuff kind of thinking.  My own version of newness was this:  
 
My cancer has a high rate of recurrence.  I know, we all want to believe that it’s gone forever, I “beat” it and it won’t ever come back.  But I hear every day or so about someone who got cancer once, had a time of remission, and then their cancer came back and killed them.  I know, it’s morbid and negative and upsetting to think that way – try living it.  But rather than dwell in the fear of recurrence and death, I’ve decided to let that possibility impact my life in a positive way.  And I have a specific goal.  Since I live with the possibility that cancer could come back and kill me, I think about what is most upsetting about that – what is the most unfair, heart wrenching part about that?  There are many things, but the biggest is this:  My daughter is only 5.  I know she’ll be ok.  She has people that love and will take care of her.  She’s smart and resilient.  But will she remember me?  I don’t remember much about being 5.  So I think, what is most important for me to leave for her?  That I love her, of course.  But that’s well established.  What I really want is for her to have strong memories of us being together and having fun as a family, but also for her to have memories and evidence of her mother doing difficult, challenging things.  I want her to be deeply aware that she comes from a woman who didn’t back down from challenges, that didn’t let fear and doubt stop her.  Now, look.  I realize that this is a little Lifetime Movie-esque.  I’m not trying to be overly dramatic.  There is a perfectly good chance I will be alive 40 years from now.  But when you can name the thing that is most likely to kill you, you have the right to move about defensively – both in fighting it (nutrition, regular check-ups, exercise) and making some decisions about how your legacy might look, whenever that time comes.   
 
If I die early from cancer  it can’t be helped that she will have memories of a sick woman struggling for breath.  Memories of watching me get sick and frail will flood her brain for a while – hell, that will probably happen if I make it to 90.  That cannot be avoided.  But what I can do is show her how to fight now.  Show her how to overcome challenges.  Show her how you make sacrifices, tape up that ankle and get on with the damned training run.  Show her how organized and dedicated and disciplined you have to be to accomplish something big.  How you have to have your swimsuit, your goggles, your hair band, your special socks, your phone armband, your sports bra, your bike helmet, your biking gloves, your cold weather stuff, your warm weather stuff.  Show her how you have to eat the right things for fuel, how you will get really sick if you don’t hydrate. 
 
I can show her how you wear a wet suit in public even though you look like an oompah loompah.  I can show her how you swim in deep, open, choppy water, fighting waves, arms, legs, wind and the alarming tightness of the wet suit.  I can show her how you pass the jerk in front of you who kicked you in the head.  I can show her how to strip off that nasty, confining wet suit and throw on a t-shirt and get on that bike and ride, and to just keep pedaling, and when the hill becomes too much, how you get off and walk, pushing that heavy less-than-optimal bike, putting one foot in front of the other.  Literally saying to yourself “I think I can.  Just keep going.  I think I can.  I know I can.”  I can show her how walking your bike isn’t quitting, it’s using all of the tools in your tool box.  It’s ditching pride for functionally, dragging yourself and that heavy, heavy bike up that hill so you can mount up and sail down the other side.  I can show her how you don’t touch those brakes on that downhill because even though 38 MPH on a winding, gravelly, country road that is not closed to traffic is terrifying, and how you just have to believe that a deer won’t jump out and kill you, or a rabbit for that matter – because you need every bit of momentum.  You can’t afford to let fear make you hit those brakes.  You have to choose to be brave.  And, if you can shake the fear, it kind of makes you believe you can fly.  I can show her that when your chain pops off, you don’t cry; you just jump off and fix it.  I can show her that when you start that run, your legs feel like dead tree trunks.  So you walk slow to get them going.  Then faster.  And even though it seems impossible, like REALLY impossible…and, ooh, there is a lady holding an iced tea….you want that iced tea.  You want to stop and sit down and drink that frosty iced tea and say “eff this race.”  And you feel sad because lots of people are done.  Like, they not only passed you on the bike, they have also finished their run.  They are, like way, way faster than you.  And they are eating pizza and drinking iced tea.  And you are just starting your run.  But there is she.  That little sprite of a girl, with her light brown hair messy and her knees dirty.  Cheering you on.  “Go mommy.”  And you cry.  Because you know you already did it.  You haven’t finished this race yet – you WILL, dammit.  But you have shown her.  She knows.  She knows what this takes for you.  She cheers because she knows this is hard.  She’s seen you struggle on the bike.  She’s seen you chug along slowly, running, just barely.  Head down, get it done.  She knows.  Her 5 year old heart is proud.  And you know, that even right now if you get hit by a falling tree, you’ve done it.   She will remember you strong and whole and healthy and badass.  And so you begin to run.  And you just make it happen, even though the tank is empty.  There is nothing left but sheer will.  You run and you finish.         
 
It meant EVERYTHING to me that my daughter was there to see this.  For a while, it seemed like that wasn’t going to work out. It was a busy weekend and it really wasn’t anyone’s fault, but I was devastated.   I had a time of panic and frustration and even deep heartache.  This was so important to me.  And I tried reaching out for help, which I really hate doing, but it was this important.  Is there anything worse than asking for help and being rejected?  Ugh!  What a horrible feeling.  This is why people don’t ask for help, because no matter what the reason, how not personal it is…when the stakes in my crazy head are this high…it feels like a rejection of me.  And I couldn’t expect anyone to understand why.  But then someone did.  My wonder friend Mitzi just reached out and fixed it.  She said “Cass will sleep here and we will bring her to come and see you.”  Not only that, but she took these amazing pictures that I will always for the rest of my life be grateful for.  Whether I die when I’m 40 or 70 or 90, please remember me like this.  Because this is who I am.  

A lot of people got me here – an online triathlon group I’m part of, friends and family, especially my husband for helping me train and others, like my mom for watching Cass when I trained as well as the race organizers and volunteers who cheered me on.  It means the world to me.  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  

 

  

 
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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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Next stop: Duke University

My next step on the journey to fully defeat cancer starts on September 8th.  I will be traveling to Duke University in the Raleigh-Durham area of North Carolina to participate in a clinical trial for a vaccine that is intended to bolster my immune system in order to prevent the recurrence of colon cancer.

 

 

 
That’s what it looks like at the cellular level, apparently.  A preschool art project.  
 
Yes, as far as we know, right now I’m cancer free. But there is a high likelihood that my cancer will come back. And while it’s entirely possible that it won’t, I am not comfortable just sitting around and waiting for that to happen.  So, I’ve decided to be a guinea pig.
 
It was not an easy decision. Of course all kinds of weird books and movies go through my mind. I’m getting injected with a virus! I could actually start the zombie apocalypse, People!  
 
But after a lot of thought, research, prayer and conversations with people I respect, I’ve decided to go for it. I am not excited about getting on an airplane four times in the next few weeks. I hate flying,  I hate traveling unless it’s for fun.  I’m sick of my life being disrupted. I’m not a fan of getting poked and prodded. I don’t really want more doctors in my life. Doctors are mean sometimes! I’m a little bit scared that something weird might happen to me.  I don’t want the inconvenience for myself or my very accommodating family.  I don’t want the side effects.  (Nothing too crazy, just nausea, fever, fatigue, etc.)  I don’t want to keep feeling like I’m under a microscope. I don’t want to have to think about cancer all the time. I don’t want to schedule my life and other people’s lives around another cancer thing.  We’ve been through so many tests and procedures.  Surgery.  Chemo. Side effects. I just want NORMAL for a while.  
 
But I want to live. And this is something I can do to increase my chances.
 
There’s so much I want to do, so much to live for, so much to see, so much to learn.  I’m busy!  I have plans!  I still haven’t met Bono!  Cancer, like those horrible terrorists in Iraq, has this tendency to go away for a while and then sneak up on you. I’m not letting that happen, to the extent it’s possible.  This vaccine might be the Seal Team Six to add to my already active forces.  
 
Besides, we might be making history. I might be a part of groundbreaking research. We might be curing cancer.  This is a way I can help.  
 
So, after reviewing my oncology records, they approved me to do the on site final screening.  I will go down for the initial visit (sadly, spending my 8th anniversary away from my husband) and hopefully get my first injection the next day. I will be traveling there every three weeks, three more times, to complete the cycle.
 
The officiant of our wedding, John, who is in ministry in the area, along with his wife, has agreed to house and shuttle me around for the first visit.  What a blessing!  It reminds me of the realness of the body of Christ. This is a man who I knew only through friends and a few good phone conversations back when I lived in Seattle.  In 2006, he agreed to do our premarital counseling, and travel from North Carolina to Pittsburgh to marry Kevin and me.  We have only seen him twice since then. And now eight years later, he was quick to offer help with all of this.  Two close friends of mine (one who is in the middle of moving!) were so quick to offer rides to the airport and any help that I would need. My husband is a little nervous about this whole deal, but he kindly booked my flights for me because I’m notorious for screwing that process up.
 
I said recently that we need fewer activist Christians walking around judging people’s behavior, and more silent servants of Jesus. This is what I’m talking about. Service.  Once again, cancer, enemy that it is, shows me love and care and glory.  Once again, I’m humbled.  
 
Pray for me and this strange chapter of the battle.