Tag Archives: HIPEC

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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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.