Tag: hope

Posted on

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.

 

Posted on

Along the way

I usually write a blog entry when I discover something that just connects for me.  Bingo.  A truth that I suddenly know – a problem that untangles itself and emerges solutionary (new word?) whole, ripe and well formed.  Something that helps.  Something that clarifies.  Something that heals.  I love those truths.  They are important.  They are answers to the questions.  The a-ha moments.  Oh, I do love me some answers.  Some wisdom.  Some decisive course of action.  Some powerful rightness.

But there is a tiny, fragile hint of beauty in the not knowing, too.  I just left a meeting where two people I admire were really brave.  Beautifully, inspiringly brave in the not yet knowing.  They were honest and authentic and willing to share in the midst of not having it figured out yet.  

That kind of courage isn’t celebrated enough.  
We value certainty and being on the other side of a problem too much.  The destination is palm trees and beaches.  Cocktails and selfies.  The journey is pot holes, flat tires and traffic.  It is tedious, tiresome, ugly.  It’s grumpy and impatient and loud.  Are we there yet?  

But so much of life is the getting there.  There are many to whom this is not news, I know.  But I’m me, and while I can enjoy a literal road trip, emotional, intellectual, relational, transitional, spiritual, life “journeys” seem best done quick and dirty.  Fast and simple and limited.  Fix it.  Decide.  Done deal.  
Where we’re going matters, of course.  But to a great extent, we allow the destinations to define us. And yet, who we are during the trip is, well, who we really are.  Who we are when we’re bored, overheated or lost.  When we’re behind schedule.  Out of snacks.  Achy from confined spaces.  Wishing for different traveling companions.  Unclear on the best route. Uncomfortable in the silence that magnifies the rattle.  Distracted by hopes and dreams and regrets. 
Who are we, then?  Can we be kind and humble and patient and maybe even occasionally magnificent in moments along the way?  In the uncertainty and not-yet-there-ness?  Or only when we’ve arrived? I saw it today.  And I want more of that. 
Posted on

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.
Posted on

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.

 

Posted on

My Thanksgiving post

Because of my exploration of gratitude, I’ve been paying special attention this Thanksgiving.  I am watching closely to see what people are thankful for.  Oh, Facebook, you make it so easy to do non-scientific research.  I notice that when people post what they are thankful for, it is always first and foremost, family and friends.  Second, people thank God (or the Universe or whatever they believe allows them to have these entities they are grateful for) for their home, their jobs, the relative safety of living in this country.  They thank for overcoming an illness or being sustained through one.  They thank those in the armed forces, police, first responders.  They thank for their pets.  For good food.  For nice weather.

Some that were unique and interesting:  

Thankful that an older relative saved old photos to look at now

Thankful for dinners without electronics

Thankful for coworkers to brave difficult work alongside

Thankful I’m not making Thanksgiving dinner

Thankful for a black Friday shopping partner

Thankful for a mom who can be counted on

Thankful for the ability to pay it forward

We are wired to be thankful.   It comes spilling out of us when prompted. Gratitude is the right response to this wonderful life.  Even if we don’t feel like our life is wonderful right now, or if this has been a really hard year, as it has for some of us, it’s possible to see beyond the cloudy, dark moment caused by pain, loss or fear.  The world is abundant!  Hope is just beyond that dark cloud.  And sometimes dark clouds bring rain and rain makes things grow, and that rain from that dark cloud prompts what will eventually be a needed harvest.  Harvest requires rain.  The thunder and lightning that come with it must be withstood by the hope of that harvest.

God has blessed us with such freedom, such hope, such opportunity.  Especially in suburban, rural or fancy urban American areas where most of my peeps live.

Yesterday, I spent the first half of my day at Light of Life Rescue Mission where I work.  We have a number of different programs and services, and one is to serve meals to those in need.  We serve breakfast and dinner 365 days a year.  On Thanksgiving Day we serve over 1,000 meals to hungry people.  This is the seventh year I have done this, and it is a miracle every year.  It is many miracles every year.  It is miraculous to me that people care so much to help that our volunteer spots (Over 100) are full by early October.  It’s a great problem to have to have to turn away so many willing hearts.  It’s a miracle that so many people who are in need can experience a warm, lovingly prepared meal, served by gentle hands, surrounded by kind spirits, offering up God’s love to any takers.

I watch the faces of those who come for a meal.  I carefully make eye contact and say “Happy Thanksgiving.”  The responses vary.  “Thank you.”  Quiet, nervous, maybe a bit ashamed.  “Same to you!”  Hearty, booming, possibly intoxicated.  “Happy Thanksgiving to you as well.”  Humble, Appreciative.  No response.  A nod.  A high five.  A hug.  A shy smile.  It’s no chore to me to do my part to provide this food (mostly I manage the people who do the real work, and just make sure everything is as it should be, like a surveillance plane, way up in the sky, noticing all that is well and the small things that need adjusting.)  It’s no chore to help a young mother find a winter coat for her little daughter.  It’s my great joy, in fact.  I actually have to step away, at times, to not be greedy, and allow others the joy of helping.  I step back and I watch a nervous volunteer carefully check tags, looking for a 5T size coat.  I watch two men calmly decide who the really cool leather jacket fits better.  Strangers until that coat.  One holds the other’s belongings as they try it on for size.  Jovial.  Laughing.  Knowing there are plenty of coats for all.  I bow my head grateful that we don’t have scarcity today.  Food for all.  Coats for all.  One only need a bit of patience to wait in line for a short while.  A man and  woman sit down on the ground and find comfort in each other.  They can’t stay there, because they are in everyone’s way, but the sweetness and the miracle of their claiming that grassy spot for a few moments to rest and feel safe and calm, surrounded by the love and care of so many people who want to reach out, to bless, to give, to love.

The news cameras and the reporters with their pens and microphones come to see.  They come to share the story.  The story of blessing and gratitude.  They don’t know, but they bring glory to my God as they share this work on their tv stations and their newspapers.  We don’t have to say it.  We know who does all of this and what great things He is up to.  Craig Wolfley, former Steeler and current broadcaster, and my friend, stood up to share in the chapel that the real miracle is that for all of us, the one in 100,000 NFL player, the lady next to him with stage 4 colon cancer, the drunk fellow in the back row, the ex-con by the door, the suburban stay at home mom spooning gravy, the lumber jack looking guy answering the phone at the front desk, the Hispanic family who doesn’t speak English but followed the trail of blessings to our doorstep – Jesus came for us all.  To scoop us all up from our messed up ways.  He knows it all.  He forgives it all.  All that we are ashamed of.  In Him, we have eternal life, and we begin an epic adventure of faith.  Faith that allows people like me to have astounding hope that crushes all fear.

As I wrap up my challenge of writing down 1,000 blessings I’ve been bestowed with, I wonder how I lived before.  Not noticing.  Not making note.  Not thanking as a practice.

I’m thankful to write this.  I’m thankful anyone would read this.  That it would bless anyone in any way.  It’s what I have to give.  My observations organized into ideas and then words.  I hope you like it.  I hope it matters to you.  I hope it is a blessing to you and that it might somehow make it’s tiny way into your long list of things you’re grateful for.

Posted on

Check it: part 3

I met Tammy through one of my prayer warriors, Leigh.  And I met Leigh through my amazing friend, Laura, who passed away in 2013 from this dreaded disease.  Sometimes it’s hard to believe that Laura is gone.  I still see her signature symbol (rainbows!) all over the place and I notice her love of people, her legacy, really, lives on as great people continue to connect because of her.

Tammy’s story is much like the rest of ours – an unexpected cancer diagnosis for a young woman.  But I especially relate to her as a mother.  The news of a cancer diagnosis rips right through you, no matter what, but for a mother, there is this additional second terror that hits you What is going to happen?  What if I’m not ok?  Who will cut the itchy tags from their little shirt collars if I die???
I’m pleased to share Tammy’s story with you.  I wish she never had to go through any of this stuff, but because she did and shared her story, it strengthens and galvanizes me in my own fight.  (5 chemo rounds down.  7 to go!)
What I want you to know is that Tammy’s is a story of hope and current good health.  She is here today, in part, because she FOUND SOMETHING and she CHECKED IT!  Please let this be your weekly reminder that getting anything that concerns you checked out is your first punch in fighting cancer.  Earlier is always better and easier!  
 
Here is Tammy’s story in her own words:
 
“I‘m sorry. You have cancer.”
 
You are never prepared to hear those words. My cancer story began in the summer of 2010.  We planned a quick getaway with friends to Deep Creek for a weekend of boating, bonfires and board games.  It led me to discover a small lump on my chest wall. After taking a nasty spill off the tube, my life jacket pulled and I felt a pop.  I made my way back to the boat and could feel a small lump or something. It never changed in size like it would if it was swollen from the fall and no bruising, so my friend insisted that I call my doctor just to be safe. 
 
Normally I avoid the doctor at all cost but something just stayed with me to get checked; after all it couldn’t be cancer because I was only 38.  
 
I did what we all do and I googled the symptoms of breast cancer other than this small bump which was obviously totally related to the life jacket.  I didn’t  have any symptoms. 
 
I met with my doctor after the initial exam things moved at a quick pace. Initially they led me to believe it might be a cyst so that day we did an ultrasound but the location was tricky.  They felt it best we should do a mammogram and a stereotactic biopsy just to cover all the bases. Great! My lump was not in my breast – it was about 1/2 inch below my collar bone (the life jacket pulled so part of the tumor could be felt beneath the muscle.)  About a week later I had the testing and a week after that which was July 19, 2010.  I received that call and no matter how sympathetically it is delivered, the words “you have cancer,”STOPS YOUR WORLD. 
 
The future is never given but now it is dark, scary and fast.  As hard as it is to hear it is even harder to say. In the moments after the call I had to call my husband and I just cried on the phone.  The words just stuck in my throat. Finally, I said it and it was even worse saying it than hearing it. 
 
I had to leave work. Fortunately I work with amazing people and they were quickly learning of my meltdown and as I exited my office I saw the fear on their faces as i shared my news.  As the hours of that day past and my house filled with family and friends I needed a few minutes to myself.  
 
I was out of tears – you can only cry so much – so I prayed for God to take my worry.  I prayed that I would do whatever the doctors wanted, see, do, take whatever, just carry my worry, God. In that instance I was at peace and was overwhelmed with love and strength which slowly built to hope. It’s with that hope I carried to my many doctor appointments and it’s that hope I kept in my heart. 
 
It made hearing Stage 3, multiple types of cancer discovered, 8 rounds dense dose chemo, port,  hospital stays, radiation, BRCA 2 gene, mastectomy, prophylactic oophorectory (sounds like a Dr. Seuss word but it’s  removal of ovaries and the Fallopian  tubes), bone treatments not just manageable to survivable. Hope and holding hope high in your heart allows you to not only survive but thrive.
When I began treatment my daughters were 6 and 3 my hair was falling out so I armed them with safety scissors and they gave me the most beautiful haircut ever.  The fear disappeared from their faces and I gave them the power of hope.  And hope is like magic – it changes your attitude when the power of God intersects with your soul. The power of prayer and hope were my “secret” weapons in my cancer fight. And if it wasn’t for that life jacket pulling the muscle I may have never detected the tumor which secretly was growing under the my chest muscle.  Miracles happen every day. I am forever grateful for my prayer warriors, family, friends, Dr. Keenan, Dr. Rubino and Dr. Analo of West Penn great cancer care.
 

 

 

Remember…if it concerns you, CHECK IT.  And if your friend tells you about some bump or lump or weird thing, tell them to CHECK IT.
 
Posted on

Some days are tough. We have to be tougher.

Some days, you just have a “day.” I got chemo on Monday. Had to wear home the wonder woman fanny pack, got through Tuesday and Wednesday. Got unhooked on Wednesday. Went to work on Thursday. Friday, I had some appointments and some conference calls. I was doing ok, but took a downturn.  Nauseous, wobbly, shaky. I hate when my hands don’t work right.

Today is a rough day.  Cassidy’s last soccer game was this morning. There was no way I was missing it.  I thought it would be ok but I just felt so tired and cold and out of it.  My attitude was tanking and I could feel the negative affect I was having on my family.  I felt guilty and frustrated.  But I prayed.  I asked God to help me be thankful.
I came home and was treated to a lunch feast of Pho.  If you have had it, you know how awesome it is. If you have not had it, it is basically the world’s greatest chicken noodle soup. It’s a Vietnamese, and the kind I like to get is broth with shredded chicken.  It comes with rice noodles, fresh bean sprouts, basil, lime, and hot sauce. It is the most satisfying meal in the world, and my lovely friend, Kait, brought us some.
Then, she took my daughter outside and played with her for a solid hour so I could get some rest and Kevin could get some yardwork done.  Do you know how great that is?
So much to be thankful for.  I struggle with these side effects.  I hate them.  But I’m always much more overwhelmed by the kindness people show us. Nausea is overcome by a healing meal.  The shakes subside with a long hug.  The body relaxes when a stressful problem is solved by a helping hand.
I’m so grateful to be the recipient of such care.  I’m full of thanksgiving, now.  Eucharisteo.  The miracle is always preceded by thanksgiving.  Gratitude changes everything.  It melts a hard heart.  It makes “I was wrong” possible.  It shines warm and bright through cold and dark.  Thanksgiving compels us to consider our circumstances in their proper context.  And even when those circumstances are admittedly bad, like mine – against the odds – that willingness toward gratitude…it makes a way.  A way for hope.  And it becomes a useful weapon against fear.  
 
Sometimes, you just have to put on that red lipstick, say a prayer of deep thanksgiving, and wait for the miracle to propel you forward.  In my experience, it always does.  God is close.  He’s always waiting for us to grab his big, strong hand.  
 

 

 

Posted on

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.       

 

Posted on

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.     
Posted on

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.