Category Archives: Cancer Schmancer

This Cancer Thing

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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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At the Cross

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Mount Soledad in San Diego.  Mama Sue and Dana.  March 2016

Standing at the cross of Mount Soledad in San Diego, last month, mom and I took in the scenic view as we embarked on this crazy journey of cancer fighting.  Fighting for life.

It’s interesting that our host would advise this location as one of our tours.  Now used as a war memorial, the cross stands among the beautiful blue skyline of San Diego despite legal efforts to have the piece removed.  The cross still stands.

I reflect on the meaning of the cross and the death of Christ on the cross and there it was…  He wasn’t at the cross fighting for His life, but ours.  Fighting for OUR lives, by sacrificing His.  The only perfect offering that could satisfy the Creator and bring  the grace of life – full and everlasting – to all who believe.

It really is kinda wild to believe Jesus is who He says He is.  To believe the scriptures.  To choose to believe, by faith, with your heart, that He died for you on the cross…   and thankfully He did that we might receive the Holy Spirit.

And with this Spirit, the power to commune with God intimately and continually.  What a gift.  All of these doors for San Diego’s cancer treatment have flung wide open.  By the grace of God and with the power of the Spirit.

It is, with faith, that I must conclude Jesus is leading the way for this spectacular cancer treatment that we are days away from embarking on.  May we be sensitive to His guidance.

Tomorrow my mom and I fly down to San Diego to meet with the surgical oncologist and go through a round of pre-operative testing.  It’s a super quick trip and we will be back Friday night.  Wouldn’t you know, the chaos of flower shoppin’ would ensue this weekend as well?  My Mother’s Day preparation isn’t quite where I had hoped it to be, but God will surely work this out, right?  A couple of angels have volunteered at the store this week, and next week I have a great staff lined up.  Lord, help me trust in You during this busy, chaotic time.

My blogging time is not accounted for, but I need a moment to rest and be still, so take that.  Most of my spare time is, for the next week and a half, absolutely rare and intentional.  If I believe Jesus can do rad things like rise from the dead, heal the blind, walk on water, and ascend into heaven…  surely I can have faith that He will take care of my silly flower shop needs, my pain, my mom’s enormous cancer procedure, my family, and all of the anxiety and stress that are attached to this life right now.  Right?

As much as we associate the cross with Jesus, it’s also a symbol of our association and heir to His mercy, love, power, and grace…  May I look upon the cross as a symbol of life full and everlasting.  In the weeks ahead may we rest all of our worries, doubts, and fear at the foot of the cross.    May He provide mama healing, peace, and comfort, super natural.  We thank you for your provision, direction, and hope, Father.  Amen.

 

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.