This Cancer Thing

There are several layers to this cancer thing.

You’ve got the patient.  Most obviously in this case, my sweet mama, Sue.

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Pictures with “Magaw” February 2016.

You’ve got the cancer.  Depending on the cancer location, type, and staging, you have a very unique and specific disease process that responds as uniquely and differently to various treatments.  We’re dealing with adenocarcinoma of the small intestine.  I say “we” are battling this cancer, because in a lot of ways, this has become a group fight:

You’ve got the caregivers.  Those whose lives are directly impacted by the patient’s cancer and treatment.  My sister, D’Ann, husband, Toby, the three little critters, and me.  Family near and far.

You’ve got the concerned loved ones.  Some that you’ve known forever and some that you’re lucky enough to meet along the way.

You’ve got the medical staff.  Everyone you encounter:  janitors, nurses, lab techs, radiologists, and even those doctors.

If you’re really lucky, if you’re really blessed, you somehow also get this really great community of supporters cheering for you.

We are sincerely blessed.

As we come back from mom’s cancer surgery and HIPEC treatment in San Diego at the University of California, it’s taken a bit of time to let the dust settle and fully consider what just happened.  The roller coaster has whirred, screeched, twisted, and upended all of us, most intimately, mama, and as we slowly lurch back into the level resting position at the end of the ride, it still takes a moment for us to gain our feet and to brace ourselves again.  A new chapter.

We’re home.

The cytoreductive surgery  to remove all of the cancer and heated chemotherapy went…  they went amazing!  It is a little shocking to report that, all in all, there were 21 tumors taken out of mom’s abdomen, liver, large intestine, omentum, and rib cage.  19 in this surgery, 2 in March.  They were all relatively small, marble sized to one mass that reached index card size.  By comparison to other patients who receive this cancer treatment, mom’s tumor load was considered “low volume.”  They fight way bigger wars than this and win!

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How we found her the day following surgery.  So many bells and whistles.
They sloshed the chemotherapy around in her belly for 90 minutes following a surgery that took about 5 or 6 hours.  We were initially told the whole procedure would take 8-12 hours.  We saw her in recovery by about the 9 hour mark.  The pain was intense, but she was closely monitored as an ICU patient throughout the evening.  ICU was overfull, as was the remainder of the hospital.  Mom ended up staying in the post-op chaos for a few days too long, until a room cleared up.

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This is in recovery within a few hours of the surgery.  She stuck out her tongue for the kids.  I think she was in level 8’ish pain.

Sporting an incision down her belly, about 14″ long, there were good days mostly, with a few bad pain days as they  tried to adjust and taper her medication.  The tumors behind her liver were growing, oddly, through her abdominal wall into the muscle.  This muscle had to be removed, a large resection of about 5″ in diameter.  Ow.  This site is still causing sharp stabbing pains, muscle spasms, and intense soreness.

We were told there would be a 50% chance that something that would require medical intervention would happen – an infection, a bleed, a somethin’.  The only kink in the system became the adhesive from a band-aid on upper epidural site.  There was a clear bandage placed over this line to keep it in place on her spine, just about shoulder blade level.  She was able to press a button to release medication into the spine which blocked the pain from her rib cage down and still allowed her legs to function.  The band-aid, about 3″ x 3″ , by day 3, created a rash the size of Rhode Island on mom’s back.  The rash blistered, festered and grew.  There is still a deep brown tone to her skin where the reaction occurred.  This requires hydro-cortisone cream.  Of all the things that could have gone wrong, we get to rub some cream on it.  Sincerely blessed.

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She walked up more steps than the physical therapist had asked her to.  Stretched her IV cords.  Show off.
By day six after the operation, mom had surpassed the expectations of the physical therapist.  Dr. Baumgartner and his nurse, Lisa, were both encouraged and pleased with mom’s post-surgical resilience.  They released her over to me on day seven.

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Leaving the hospital!  See ya, Thornton!
At this point, I had flown back and forth to San Diego, twice, as I wrapped up Mother’s Day and more at the flower shop, with very little to no rest a night or two.  I relieved my sister from her 12-hour hospital days and she immediately flew home and went back to work upon landing in Boise.  Mama taught us to work hard.  Not gonna lie… it was daunting.

Upon getting to our hotel, I grocery shopped, started a medication log, and then we slept.  For two days mom and I slept and ate sandwiches and did laps around the balcony of our hotel.  And we slept.  Sincerely blessed.

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Aunt Shannon took the kids to build a bear.  Dressed in Wonder Woman attire, she says, “We love you Magaw and mommy!”
Instead of a 14 day hospital stay, we ended up making it a 14 day stay in San Diego.  Mom literally rocked it.  I believe all the of the prayer has kept this genetically aggressive tumor from reacting the way it is wired to act, God’s protection.  Somehow, mom is just defying the odds of this cancer prognosis.

This year we found out mom’s cancer was back in January.  We were told in February that doctors in our location could do nothing more to help her.  She was given the choice by her oncologist to let the cancer grow and take chemotherapy after the disease had advanced as a way of “slowing the cancer down” and prolonging life.  Mom had taken this regimen of FOLFIRI and responded poorly.  It made her feel sicker than the cancer.  We left the oncologist’ office feeling down, but hopeful that our surgeon would be willing to help us by removing the tumors.

The Idaho surgeon refused to operate and refused to help us find a surgeon who would help us.  That was a sad day.

In the following weeks we were denied service by MD Anderson in Houston, Texas. – reportedly the best cancer institution in America.  Without hesitation, I called a number in our back pocket.  A Facebook comment by a long-distance friend.  We called the Moore’s Cancer Center at the University of California – San Diego.  That phone call was the first time I had hope in a long time.  Thank you, Kate.

We ended up with a phone interview with our new surgical oncologist, Dr. Joel Baumgartner, in late February.  This led to a laparoscopic procedure in San Diego in late March.  We also went to San Diego in April for a pre-operative visit.  And, finally, we are home from our May visit with the best possible news.

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Mom and her doctor.  This was taken the day following surgery.
Somehow, it’s a little hard to celebrate.  I think we are all scratching our heads thinking, “What now?”  I mean, really, just heal and hope, right?  It is a new blaring reality that mom will need follow-up visits with doctors in San Diego and we will start this in July.  It’s not over yet.  You try to keep both feet on the “miracle” side of the line, but you know there is a scan in a few short months and more San Diego.

At this point, I know two things.   There is no way to predict what will happen in the future and I am just trying to rest and breathe and lay it all at His feet.  This is so hard for me.  The second thing I know, is that it is impossible for me to thank all that need to be thanked at this point.  I must give all glory to God, because there is no way to put a name to every act of kindness that has been shown to us.

Super blessed.

Another layer to this cancer thing:  the story itself, as a whole, and the hope it provides.  If anything you see in us offers hope for you or your loved one’s cancer, know that it is God shining through us as He has offered this path for us.  It is one of the hardest, frustrating battles that we will fight, and it has taken a lot of courage on everyone’s behalf.  Getting to tell the doctor and his staff thank you for being willing to try the save my mom’s life was humbling and hard and real and it wouldn’t have happened if all of the other layers – the love of those near and far, our family and friends both new and old, the angels He has planted among us, the rejection, the open doors, the prayer, the financial support, the plane tickets…  all of God’s intricate design working together for our good.

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Cancer data in progress!

 

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.

UCSD, say whaaat?

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.

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

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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Oh yeah! I am a fighter!

December! I don’t know how this happened. December? 2015?  Life has felt good and slow and easy. It surprises me that I type that because, really, we have been pretty stinking busy and stretched.  But, it *must* be a God thing, because I don’t think I should have this much “okayness” with life right now.  I know that God is with me because I can look back at the chaos life has served me and feel okay.  Not just okay, even, but, peaceful.  And, there is joy…
The pain isn’t keeping me down all the time, but it’s a subtle reminder of growing disease. A year ago I was walking a couple of miles everyday.  I am thankful now, just to walk to my car sometimes.  I have been using my hands, more and more, to walk up my thighs as a way to help myself up from a seated position. We’re going to get some of those handles installed around the house, sooner than later. 35 and hips and back growing too weak and painful to stand up without assistance.  Humbling.
The reality is, it’s looking more and more like I drew a really bad lottery… twice.  Though I have only been diagnosed with Multiple Sclerosis, I also have positive blood tests for Stiff Person Syndrome (SPS).  SPS is rare.  Super rare.  1 in a million.  My neurologist is treating me for it now with every prescription most Google experts recommend, with the exception of anything IV.  That is saved for when it gets bad.  I thought I might go to some real life expert in Seattle to get the official diagnosis, but… I am being treated now.  Which is more than a lot of people who are and are not diagnosed, and suffering, are getting.  For that, I am thankful.  For right now, it’s the best that can be done, regardless if I have an official diagnosis.
After 15 years of dealing with the medical community, I sort of have an idea of which battle to fight.    If, in fact, this is SPS, I am still at a mild stage of the disease, but there is progression.  Particularly, the lower back and hip problems.  I want to be the fighter.
I want to keep making to-do lists that are too long and planning my church service months in advance and I want to keep daydreaming and pushing this little flower shop along.  I want to cuddle my boy and chase the girls to all their activities.  I want to see my middle schoolers thrive in Jesus and my Bible study ladies devoted to God.  I want to fight.
I have such a great coach in my husband, Toby.  He routinely inspires kids and adults into greatness at his jiu jitsu classes, at youth group, or in his sermons.  How fitting that God would pair me up with someone so encouraging and strong.
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My husband, Toby, and my mom, Susan, at the annual community Thanksgiving Dinner our family hosts in Weiser.  And a bag of turkey gizzards.
It’s also ironic, or completely DIVINE, that I have been able to watch my mom so closely fight her cancer over the last 9 years.  Although life has been cruel, hard, lonely, and unfair, here she is!  Doing the best she can, where she is, with what she has.  That 18% chance to make it two years.  Ha.  After having small intestine cancer reoccur 6…7 times (I honestly lose track), surgery after surgery, battle after battle, she gets back up and tries again.  Most would have succumb to the cancer.  The pain, the bills, the depression, the weight of it all.  My mom has endurance and heart.  All bundled up into a beautiful smile and the most tender soul.  She is a fighter.
God is good, I am always loved, and I will fight, too.