Monthly Archives: March 2016

Cancer data in progress!

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Well, we’re doing what we do most:  waiting.

Waiting on doctors and test results and emails and dates.   Supposedly this refines patience.  Huh…

We wish we had a plan and knew exactly how this cancer surgery business is going to unfold in San Diego, but we don’t.  People ask for updates.  I have none.  People want answers from me that I can’t give them.  Funny feeling.  I have these doubts from people I know and love and respect that gave input that my mama shouldn’t even have this surgery.  Funny feeling.  The struggle is real.

Small intestine cancer is so very rare and aggressive that most people with this cancer type never make it five and now ten years as my mama has.   The cancer is so fatal and rare and quick that there isn’t significant worldwide data on how to treat this cancer.   The patients themselves are not around long enough, nor are there enough of them, to collaborate a study!   I found ONE!  One study in the Netherlands that had 17 patients who reached the point my mom has – the point of trying this rigorous procedure—cytoreductive surgery to debulk and remove tumors followed by a warm chemotherapy bath poured directly in the belly.

These seventeen patients have made it an average of 31 months, but here is the thing – the data is so new and fresh, that this study is not complete!  There are still patients living, changing this average lifespan.   Changing the data.

The process to choose patients for this dramatic procedure has improved over the years.  In former days, surgical oncologists would try anything at the request of the patient’s vie for survival.  This left a very bad post-operative patient.  To be qualified for this invasive treatment, the criteria have been refined and the door is narrower and choosing candidates who will have a favorable outcome is crucial.

To select patients, one guideline is the “peritoneal cancer index” or PCI.  This PCI splits the abdomen into a tic tac toe grid.  Each square is then scored.  A rough sample of the scoring is that you get points by having tumors and whether or not they are invading other organs.  The small bowel is also portioned into four quarters and each quarter is scored.  They add up all of these points to come to a numerical reference.  This number is very closely indicated to how well you will do after the procedure, the lower the score, the more likely the surgery will benefit you.  If I am correct, the highest number they take is 13.  My mom’s score, roughly, it was just after surgery and I was hashing out quick details with our surgeon at UCSD, my mom’s score is a 6 to an 8.

This factor, alone, makes me feel confident that she would not be a hacked up, chemically filled filet of Susan after the operation.  This score helped me to see just where she was in “real life” in her abdomen.

While this PCI helps medical staff rate and grade her potential success to this cancer treatment, I smile because it doesn’t include her tenacity, spirit, courage, fight, and spunk.  It doesn’t reflect how much Jesus is fighting for her.  It doesn’t show all the prayers going up and the blessings and protection coming down.

When it comes to this stage of fighting cancer, there are a lot of difficult decisions and scary steps that one must go through.  Our hope is that as mom’s story unfolds, other people with small intestine or rare cancer will find a source of strength and renewed hope.  God’s plan is that we should all be in heaven, in personal communion with Him someday.  We have hope and security in that.  We are not ready to ship mom off eternity.  What a glorious day that will be!  However, her data set is just not complete, yet.  As long as the doors of this earthly life keep opening for her, I will choose to support, encourage, and advocate for her.  We thank you for your continued blessings and prayers.  Amen.

A complicated, beautiful mess.

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I have a moment.  One unoccupied, take advantage of the quiet, moment.  Life is blurrish.

In January, I had the mindset to sell the flower shop.  My beloved.  I was realizing my place was to support Toby and our children and I was feeling defeated in my physical self.  At that time I put the shop on the altar of sacrifice.

Little did I know that February would upend me and despite my notion to sell the shop, I didn’t have time to prepare.  I was trying to run a business, Toby had to be gone for work, Valentine’s Day, I prioritized finding a surgical oncologist for my mom, and then there is house and children and that silly MS thing.  I found myself with no time to organize and inventory and prepare the paperwork for the proper sell of a business.

What is my goal?  Take what I can get and get out quick?  Or, wait, re-stock, re-group, and take the time to sell it well.  I still haven’t finished my research on how to valuate a business.  My business.  My mind is always whirring and positives and negatives both stung me hard.  With all of this cancer talk and not knowing what was to come, I chose to cling to what I knew.  Ultimately, my brain and my heart couldn’t decide if I could lose them both.  My mama and my shop.  If I was going to lose my mom, could I stand to lose the structure that the shop forces me to have?

I’d like to think I was one of those who would just pick up the pieces of life and keep keepin’ on.  But, I know myself.  I know how chronic illness and depression pull you into idleness and days of pain turn into months and years of pain.  Pain, regardless.  I need something to draw me out.  The intention of the shop was to be that place.  But, that place had turned into something to avoid.  Paperwork piling up, behind on bills, taxes overdo, more bills, and all the people…  people I loved with relationships that turned bitter.  Life took a hard twist and friendship was broken and things at the shop aren’t the same.  And, things got more complicated.

The complicated issues of cancer on top of the complicated layer of flower shop on top of the complicated layer of family with three complicated kids on top of the layer of complicated MS on top of the layer of complicated everyday life…  would the fabric of my life be softer without some of these layers?  Could I weave a more fluid life?

I could.  I think I could.

But, then my choices to fight hard would turn into the easy choices of submission.  Submitting to cancer doctors and surgeons who gave my mom up for dead.  Submitting to my presumed future disability instead of doing what I can now.  Submitting to dreams left unfinished.  I know reality, and I know that I may do some of these things in the future.  I know submission can be a beautiful thing when done for the cause of Christ.  With these things, however,  I am not there yet.

We are waiting for biopsies and tumor board meetings and surgery dates for my mom.  She has a very realistic chance at a few more years of life, instead of certain death.  We are fighting hard at the shop to pay off debt, then to restock, then to start growing again, all with the thought of making the business a more valuable asset to sell at the right time.   The right time.  His time.

I’ve been learning about hope.  Hope is trusting in His timing.  And, the thing is, is that if we have hope in God, we have hope in two things.  We have hope that even if cancer hits hard, we are heaven bound because we believe Jesus died to make this possible.  We have a second hope that God isn’t going to leave us hanging.  We may be hanging by a thread sometimes.  A complicated, barely there thread from the complicated fabric of our lives, but we have hope that He won’t leave us that way.  All this hangin’ makes us stronger and soon we are swinging into the next step He has planned for us.  His plan for us to have a good life, a beautifully complicated mess, and have it to the full.  Amen.

 

 

UCSD, say whaaat?

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Though there were hurdles, it appears as though we are getting one step closer to figuring out the cancer this round.  Through heartfelt emails and sincerely apologetic phone calls from our contact at UCSD, we found out we are on schedule with the exam and laparoscopy this Friday.  As in two days from today.

With humbled hearts we accepted plane tickets from cousins Scott and Terra, using up most of their air mileage because of the last minute flight and that whole spring break thing we intercepted.  We will arrive in San Diego and be greeted by my childhood friend, Mischa, who is offering us taxi service and a place to stay for the weekend.  We will use a debit card with funds given to us by loved ones.  It is overwhelming.  Hard to comprehend.  Something about ‘every good and perfect gift is from above…’

Even though we know this test may not bring all the answers we want, we will know, with certainty, that we tried every surgical avenue possible.  As an advocate for my mama, that makes every ounce of effort I have put into this worth it.

Tomorrow we will play in the California sunshine and make a memory or two.  Friday, we do work.   My questions and concerns are ready.  Mom’s got her stretchy pants packed!  Exam in the morning, laparoscope in the afternoon.  We should know that evening whether the cancer is treatable.  Late Saturday we will be home.

We may not have the answers, but we’ll probably have a different point of view.

Continue praying.

So, this is cancer.

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My poor mama is still waiting to hear what the doctor thinks about this cancer business.  Because the scans the doctor needed could not be done all on the same day, but four days apart, records were also sent four days apart.  Which means half of our material missed their weekly meeting times.  I was being gracious when I said last week that hopefully by Tuesday, as in today, we would have an answer.  I think God took it as an invitation to strengthen my patience.

And, the answer we’re waiting for isn’t even an answer.  It’s just the next step.

This is chronic cancer.

You brace yourself repeatedly with one foot ready to adjust and move forward with the next treatment step, while the other foot is still trying to keep things stable where you are in case the news isn’t what you want.  As the deadline to the mini-surgery approaches, it is seriously scheduled for Friday in San Diego, and we don’t even know if she is eligible, or the if the cancer is too far advanced, there is certainly a heightened sense of stress and tension.

Trying to choose peace.

Wanting to relax and rest in Him.

Super hard for me.

My brain is mostly a mess.  My home is 68.7% mess.  The flower shop is 65% mess.  Easter has arrived in the store and fragrant lilies are taking up lots of space.  Not knowing whether or not I will be there this weekend also weighs on me heavy.   How do you prepare a flower shop for the florist to be gone?  That’s a good pickle you got yourself in, Dana.  Not enough time or finances to train someone.  I have surrendered to doing my best.  My mama will come first, that is my choice.  I believe God will honor that and protect the rest.  Dude, that sounds so good in theory.  Application is the bugger.

As we wait to hear the results, please pray.  Pray for us to respond to the doctor’s decision with ease and grace.  Pray for us to be patient.  Pray for my mom as she deals with so much hard uncertainty, once again.  Pray for healing and hope.  Amen.

 

 

It’s Just Me, Again

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It’s Just Me, Again

I let myself be brave Saturday.

My blog is my own now.  Still hosted and things, but www.bloominginidaho.com is all plugged in and it is really me. $73 dollars and about an hour, fine, two hours of user-related technical difficulties later, and it is just me!  This isn’t the beginning of the blog, but in a very real way, it is.

I feel like introductions are certainly in order.

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I am Dana.  I am 36, married to sweet Toby, a mama to three of the sweetest naughty kids on the planet.  I am a small town Idaho grown girl.  We moved to Weiser, temporary, when my mom was diagnosed with cancer in 2005.  My husband is an amazing computer guy who does stuff with printers that I can’t articulate for HP in Boise.  He has worked there for 15 years or so, with no education of sorts to speak of.  He is hard work and determination.

We bought a little flower shop in Weiser for me to play with in 2007.  So much for a temporary move.  Two little girls in tow, we blossomed and tried to figure out this business thing.  We grew and we changed and we learned.  Somehow, from knowing nothing about flowers when I first walked in the little shop, it is still rooted in the little country town.

Through the business and broken bones, the disciples found us.  We found Jesus at 30.  This relationship rocked our world and changed our life’s direction.

In 2013 or 2014, after being sick since my late teens, I was finally diagnosed with Multiple Sclerosis at the Mayo Clinic in Scottsdale, Arizona.  All during this medical battle, my husband took his aggression out on the mats.  Perhaps, his lifeline through the physical, financial, and emotional rollercoaster that chronic medical problems can bring, he worked through it positively, healthy, and hard.  He earned his way to a brown belt in Jiu Jitsu and his very own studio sits right next to my sweet shop.  As he continues to fight on the mats, I continue to fight neurologic illness.  The disease continues to reveal itself in an atypical way, but at least, after fifteen years with chronic disease, I am taken seriously.

Almost as serious as cancer.  Ha.  My ferocious mother has been battling adenocarcinoma of the small intestine for over 10 years!  This is a rare diagnosis and she was initially given an 18% chance to make it two years.  We have been blessed with so much time.  Unfortunately, a lot of that time has been regrouping from 6 cancer reoccurrences and eight total surgeries.  We are now fighting a more advanced stage of the disease and are presently working with doctors at the University of California at San Diego Moore’s Cancer Clinic to see if an advanced surgical and chemotherapy treatment would be helpful to treat mom’s cancer and give us more time.

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My husband helping me get lots of pictures with my mama.  I realized I didn’t have a lot of us together.  ❤

 

There are so many layers to my little small town life.  My intention with this blog is to share the work of God within these layers so that others might see Him.  I’m not always positive and unicorns and rainbows – I battle depression and anxiety, but I’m working on that.  Always working on that.  I am a rough-edged work in progress.  Something about being raw and real about it has seemed to help others.  I’d like to share the story of my mom and my health battle’s as they are with hope and with grace.

I’ve been sitting on this gift of writing afraid.  Afraid to call it what it is.  A gift.  It is mostly easy and natural to me.  But, I’m too afraid of my own insecurities to put it out there.

So, here is me listening to the little angel He sent me last week, serving with the Spirit of His power.  Amen.

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Buoyant in a Sea of Sadness

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I am not quite sure what to make of this season of my life.  In all honesty, it feels super vulnerable to put it all out there.  The judgement.  But, there is this very clear season of my life when I have been clearly detached of all those I love closest.  A fog.  Few emotions.  Lots of sadness.  I try to suck it up, keep it in, but the lines under my eyes give me away.  Tears often wiped as I trudge through my days.  And months.  And years.  And, with all this time, here I am still behind.  Time.

Time is precious.  I have very little of it.  There is always something, a place, a project, a holiday, a birthday, a business, a lesson.  I am always behind.  My house shows it.  My children and husband feel it.  I try to get up, do the basic things, make a pattern, because without one, I go in circles.  I pace.  Just like my dad would in the old Slyter Sales building.  Circles, mumbling to himself, too much on his plate, stress building.  I am a mess inside.

Treading water for a really long time.  Tired.  Kinda drowning.

One day I think I’m okay and the scriptures fall on my ears with joy and ease and I am thankful and life is okay.  And then, one small disappointment and my days are shattered.  Too thin skinned.  Too vulnerable.  Too weak.  I hate that I can’t handle it all and bring self-inflicted chaos into my own life.  The voices hit hard and suddenly I am worthless.

The anxiety runs deep inside my bones.  So ashamed of it.  It weighs me down heavy.  Public is hard.  It is medicated and forced and surprises me when it’s easy.  And, if anyone is surprised by what I say, know this, it is only by the grace of God and His strength that I get through the day at all.  Answering the phone is hard.  I know, stupid, right?

I don’t know what day it is most times.  Number or letter or both.  I’m striving for organization so life will be easier, and making organization, makes a mess first.  I found an app on my phone for making a memo.  I felt so fancy.  I made a “to-do” list.  So far, it only grows.   Nothing gets checked off.  I don’t even like opening that app now because I feel more behind than organized.  Feeling pretty destined to kinda suck at life.  It would be easier to stay positive if it weren’t for the chronic, growing pain.

Everyday is a battle for physical comfort.  Medicating all throughout the day.  Whether it is MS or SPS, the stiff muscles are growing tighter with time.  Slowly the spasms are starting.  I take them in stride.  Walking has been great for a few months and the lower back has been eased up for a few weeks.  The fatigue is a hard battle, but I have been making it through long days without naps.  It must be the prayers.

Prayers.  My prayer life has changed.  “Speak to me, Lord, your servant is listening.”

Trying to listen.  Trying to figure this Jesus guy out.

I have enough distance in my walk with God now, that I know when there is pain, confusion, chaos in life, God is going to use it for something in the future.  It won’t go unjustified.  Knowing that gives me hope, but it doesn’t always seem quite relevant when I am in the fire.  I cry even though I want to be brave.

Brave like my mom.  Fighting cancer so long and so hard.  Makes it look easy.  Nothing about recurrent cancer is easy.  Every time you brace yourself.  Every time you go through this roller coaster of fear and physical and emotional stress.  Reacting to the cancer, fighting the cancer, trying to regain life after the cancer.  This time the cancer is not treatable in Idaho and you’ll have to find your own way.  What do you say to that?

There are no words sometimes.  I’ve heard that a reason for drowning is that you can’t scream for help.  You’re physically treading water and then gasping for air and water starts filling your lungs where air used to be.  Nobody knows.

Sometimes, nobody knows that people are emotionally and mentally drowning because the bad stuff comes in and you still have to cope, and you can’t get it all out and keep going at the same time.  And, if you got it out, the bad stuff would come out too, and that’s too hard.  So you just keep trying and nobody knows the suffering inside.

 

If there is any point in sharing this today, it is to say, that if there is anything good that you see in me, it is because of the mercy of God and the gift of the Spirit.  Inside, I am a true mess.  I understand the suffering of depression and anxiety because I am there!  It is only by the grace of God that I am a somewhat functioning adult.  It is only because I made a choice to seek Him and stayed obedient to saturate myself in His Word, that I feel I am protected in this storm and remain buoyant at all in this sea of sadness.  Amen.