Abide With Me Tis Eventide

Some months back, a sweet friend found this image on Pinterest.  The subject happened to resemble me as a teenager, circa 1994- shoulder pads, big 90's hair, and all.  Oftentimes, I have held fast to it as I have been about to take another uncertain step on this scary cancer journey.  The image of being encircled about in the Savior's arms proved to be especially significant during my most recent step on my road to recover- the 2nd stage of the 2-stage liver resection. 

                                                    This photo was actually shot in '94!

I returned just yesterday from a 10-day stint at UCSD Hillcrest Hospital. How relieved I was to be wheeled out!

I had been warned that the 2nd step would take more out of me than the first, and that there were some risks involved but nothing could have quite prepared me for what would be one of the most painful ordeals of this entire cancer battle.  

On the evening of Wednesday May 25th, a week following the surgical procedure I was wheeled down to the Radiology to get a CT scan to check on said surgical risks, such as blood clots.  I was told by the team of doctors supervising my care that they would let me know soon about the results of the scan.  I wondered what the scan would find, but assumed that no news was good news and I would continue with my typical recovery and would be discharged in a couple of days without disruption. 

On the morning of Thursday, May 26th, I awoke with one objective; a shower. I hadn't had a full one since I arrived over a week ago, and I was overdue.  The kitchen staff brought up my breakfast tray as usual and even though the eggs were too greasy and the potatoes too heavy, I ate them.  I didn't have any company at the moment as Carl was at work my dad was on his way to pick up my sister Natalie from the airport to do just as she had with the last surgery, help nurse me to recovery at home.   I had assumed I would be home by now as my last hospital visit from the first stage of the liver resection was only 6 days.  At least I would be able to enjoy Natalie's company at the hospital, assuming we could convince a staff member to hook us up with a hospital chair bed, which was at times, no easy feat.  At least I finally had a private room.  Prior to that, I had shared a room in the ICU, with a lady who had a party of friends every night at approximately 10 PM. I was on such heavy medication that I was able to sleep through my  neighbors' nightly chorus of laughter, but still.... This hospital stay seemed to drag on and on.

As I was finishing my breakfast , my nurse Kellan arrived to deliver the news that last night's CT scan had revealed a blood clot, and that my team needed to put in an Infereior Vena Cava filter that very morning.  Not understanding the gravity of the situation, I asked if I could have my shower first.  Kellan replied that Radiology could fit me in now, and this was important.  A doctor informed me minutes later that this procedure was not just important, it was urgent, because if the situation weren't addressed immediately, then there was a risk of the blood clot leaking into my lungs, which could have deadly potential.

For this type of procedure, I was supposed to go fasting for at least 6 hours, but there was no time for that now.  I only had a quick few minutes to call Carl and Dad to let them know of the coming events as best as I understood them.  I would be going into surgery within the hour, at about a quarter to 11:00.

I quickly got ready and a team of nurses who all happened to speak Spanish wheeled me down the elevator to Radiology.  Although my heart was racing, I somehow managed to make conversation in Spanish from my surgery cot, and was even complimented on my skills.  As they handed me off to the attending surgical team of doctors and nurses, the Hispanic gentleman nurse said, "Que Dios este contigo (May God be with you)."  This was quite kind, but it also scared me!

Then came the clincher.....Because I had already eaten breakfast, I would be given no anesthetic!  Why the teams did not coordinate and have me wait to eat until they had reviewed the scans, I will never know; I just knew that I had to go forward with the decision the team had made on my behalf.  The heaviness of the cafeteria food made me nauseous as I tried to manage a few questions about what this procedure would entail.  They were putting a filter into my inferior vena cava.  They would have to balloon my artery to insert the device. The procedure "may be painful," but was simple and should only last "about 5 minutes."  The local anesthetic I would be given was akin to the kind used during a dental procedure.

These were major understatements, but a detailed, accurate description of what I was about to endure would have only added to my increased sense of panic. 

Well, 5 minutes became 45 of the most harrowing pain I have ever experienced. When I had my 2 girls, I did have the benefit of an epidural,  As they worked on inserting the filter in the back of my neck, they used a latex balloon to block half of my face.   As I tried to take deep breaths to manage the pain, I felt I was suffocating as the smell of latex overwhelmed my senses.  I had my typical, sharp abdominal pain from the surgical site, and now I was feeling it acutely at the non-anesthetized point on my neck where they were performing surgery now.  

One of the nurses had a pleasant Australian accent, and the team had asked me who my favorite band was , so U2 blared in the background.  The song that was playing while I was losing my cool and beginning to scream was appropriately "Stuck in a Moment."

"You've got to get yourself together; you got stuck in a moment, and now you can't get out of it."

Now I have to wonder if I'll ever enjoy that song again!

The all-male team kept telling me "I was doing great," and did what they could to calm me down.  I was told to remain completely still, but at a desperate point, I disobeyed and moved my leg.  For this, I was reprimanded by  the surgeon, who said:

"Carmen, you can't move or you could put everything at risk!"

OH NO!  Would we have to start all over again as a result of my foolish mis-step?  I felt like a scolded child. A few minutes later I was told that we were "halfway done," and I cringed as I didn't know how I could endure even another moment.  As I remembered the warning that "blood clots could be deadly" I felt like my life hung  in delicate balance. Could one small error risk all that I had fought for these past 8 months?

Although I would not have been allowed to bring a family member into the surgery room even if this procedure would have been scheduled in advance, how I needed the hand of a loved one to squeeze.  There was not one available, but I did have prayer.  As I took a deep breath, a portrait of a woman being strengthened by an army of angels which my parents had gifted to both my cousin Stacy and I days before came to mind.  How I needed those angels now!

By and by, the torture ended.  I was shocked to look at the clock and find that it was only 11:45.  It seemed like a lifetime had passed since I had been wheeled into that emergency room. I was told my the team wheeling me out that my family was now waiting for me in the lobby.  It was such a comfort to see Dad, Natalie, and Carl. My mom arrived later that afternoon.

 Miraculously, I did not experience any additional physical pain aside from the typical pain at the post-surgery site. But I felt emotionally traumatized  and drained from this unexpected turn of events.  I did not want to be alone tonight.  I finally got my shower with the help of my nurse's aide, Elena, who was grateful I could speak Spanish.  She then sat with me in my room to watch her favorite tele-novela.  When I requested a bed chair for Natalie, instead of giving me the typical run-around, she quickly commandeered one.  

Carl had to return home to be with our girls and go to work the next day.  My sweet husband is carrying the weight of the world on his shoulders right now but he soldiers on, without complaint.  As I sat in my hospital room with my parents and Natalie, I confided to them how scared I was.

Although the scan had revealed that the cancer was now gone, it seemed that there were endless looming threatening risks. I didn't know how I would sleep tonight.  My mom shared her faith that everything would be alright, reminded me of all the miracles we had witnessed up until this point, and told me that we could request the presence of our Savior Jesus Christ in our very hospital room this night.  She then requested that we all sing one her favorite hymns, which has recently become a personal anthem, "Abide With Me, Tis Eventide."  The song is a heartfelt plea for Christ's presence as "the shadows of the evening fall."  This is an arrangement that was often sung by the BYU Singers during my time as a student there.

As we sang the hymn together, a sweet spirit enveloped the room. As I looked at my sister sleeping next to me and thought of the time she sacrificed away from her own family to care for me, I knew that I had an angel with me to attend me as the shadows descended.  

I am now past the darkest of the night, and am in the comfort of my home on the next step on my road to recovery. 

Scars

Lately, I have been asked how I am feeling about going into this second surgery.  Physically, I am finally starting to feel good again!   Friday night, my favorite cousin Stacy and I and rocked out  and danced all night to a Gwen Stefani concert.

Today I was able to do my neighborhood fit camp workout and actually felt well enough to do the full body step-ups and ice-skaters! 

 I feel free enough to do these things just in time to subject myself to another major surgery which will require at least a couple of months of down recovery time. 

As I anticipate the 2nd stage of this 2-stage liver resection, I have mixed emotions.  Gone is the paralyzing fear that accompanied the preparations surrounding the first.  I at least have an idea of what to expect.  I will be in the hospital for at least a week following the surgery. 

I will come home and be on heavy pain medication for at least least a couple of weeks.  I will have to give myself a tummy injection for 30 days following the surgery.  I will feel exhausted and have bouts of pain.  I won't be able to drive for a few weeks.  

In addition to the surgical consequences I can forecast, there are a few new risks present.  This time I will have my entire right liver lobe- nearly 80 percent of my liver and my gallbladder removed.  My surgeon is confident that I will get along fine without my gallbladder, and the remaining 20 to 30 percent will be more than enough to keep me alive. 

Still, there are questions which frequently invade my sleep:

Will the surgery cause irreparable harm to certain body functions?
Will the pain be more or less tolerable this time?

Most importantly:
Will the surgery be successful in permanently eradicating this cancer?

I echo the query posed in Norah Jone's "Nightengale," 
Does it seem like I'm looking for an answer to a question I can't ask?



Notwithstanding the answer to any of these questions, I WILL be having this surgical procedure tomorrow, Wednesday May 18th at 8:20am.  And feelings of fear and dread aside,  I am grateful that I have this opportunity for a possible cure.  Every part of the fight since August 19th of last year has lead up to this critical step in this fight.  

Speaking of "The Fight," there will be guaranteed battle scars.  Presently, I am still nursing a scar that runs for the center of my chest to my naval, and this scar will be re-opened  and have a new perpendicular companion. Until I can rock that abdominal 6 pack, I will spare you a selfie, but here is a picture of a model featured in the Colon Cancer Coalition's Colondar magazine, and my scar will look something like this, only there will be an extra added T and it will form the shape of a hockey puck.  

In addition, I still bear scars in my neck and left hand from the IV needles infused during the last surgery.  The one that still smarts is the small puncture wound on the top of my left hand.  Each time it hurts, I can't help but think of hands that bore much bigger wounds. 

The book of Isaiah, and one of my favorite movements from Handel's Messiah teaches: 

“Surely he hath borne our griefs, and carried our sorrows: … And with his stripes we are healed” (Isa. 53:4–5).

  
Recently, I read Stephanie Nielson's book, Heaven is Here which is a biographical account about a well-known mommy blogger's journey of healing from a near fatal plane crash.  She was hurt and disfigured to the point of being unrecognizable to her children.  She endured an entire year in the hospital and dozens of painful surgeries, and bears many many scars, on more visible areas of the body than the abdomen.  She had the opportunity to meet with a beloved LDS apostle, Elder Jeffery Holland who encouraged Stephanie to be proud of her scars.  He said:

"We look for Christ's scars because they are eviden e of what He did for us.  They'll be the first things He shows us when we see Him again.  Your scars tell a story, too.  Although they may not make you feel attractive, they are a witness of a miracle, that God blessed you to live, and that you have accomplished very difficult things."

Although I don't love the appearance of scars, I know they will always bear witness of what I have been able to overcome through the help of my dear family, friends, and my Savior Jesus Christ.  I can't help but think of the following song I once sang with a BYU choir, "Behold the Wounds in Jesus' Hands:"

A Peace which Passeth all Understanding

On September 10, the day after my first chemo treatment, the Dr. Roeland from the UCSD Moores Cancer Center, whom we met with the week earlier for a second opinion, called us with a special recommendation - to increase my treatment from Folfox (3 chemo drugs) to Folfoxiri (4 chemo drugs), which meant the addition of one more toxic drug, irinotecan.   Folfoxiri is considered experimental, and not standard treatment.

Dr. Roeland felt that because of my positive prognostic characteristics (youth and good health), that receiving a more intense treatment would increase the small chance of my becoming a surgical candidate in the coming months. He suggested that we propose his recommendation to Kaiser, and that Kaiser would need to be willing to do it in order for us to proceed with the Folfoxiri. But first we would need to decide if I wanted to do an increased treatment.  After all, the first chemo treatment really knocked me down in terms of nausea and exhaustion. The only word in the English vocabulary that I can find to describe chemotherapy is ghastly.  Iri is pronounced as eerie, which sounded ominous. 

And when I discussed this Folfoxiri option with my Kaiser oncologist, she went over all the harmful side effects, and said that it may not improve my chances anyway.  I was now faced with a difficult decision that I had to make by the next day.  Should I risk torturing myself with a more aggressive treatment when I might not even get a good outcome?  Fear and panic overcame me as I wondered what to do.  I was so overwhelmed that I did not see how I could possibly make a rational decision.  I thought about the query in the hymn, “Where Can I Turn for Peace?"

Who, who can understand?  He only one. 

The following youtube video was created 2 years ago as a dedication to a fallen war hero, but I sung the same arrangement by my conductor, Dwight Bigler, in a BYU Women’s Chorus group 15 years earlier.  The curly blond girl with the black in the front row looks like I did 15 years ago, so this video is a good representation of the song that ran through my head as I had a difficult decision to make. 

I decided to call my church leader, my stake president, President Ballif for spiritual guidance. He answered immediately, and kindly reminded me that I could receive inspiration from the Holy Ghost.  

Following Christ’s earthly ministry, he promised His disciples that He would not leave them comfortless with the following words:

 But the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you.

President Ballif advised me to find some quiet time to study the scriptures, make an informed decision to which direction I wanted to proceed, go to a quiet place and then ask the Lord if my decision was correct.  If it wasn't He'd let me know in the form of a stupor of thought- the opposite of a peaceful feeling.  So I took this advice. 

As I thought through the situation, it occurred to me that Dr. Roeland went out of his way to recommend the increased treatment.  He didn't need to think twice about me, as I wasn't his current patient.  The UCSD doctors were also scientists devoted to research, and had higher credentials than the Kaiser doctors.  After I prayed about my decision to move forward with the upped treatment, a peaceful feeling enveloped me. 

The very next day, a friend- a fellow mom from Carleigh’s school called unexpectedly and asked if she could come visit.  She brought with her a shawl that had been hand knitted from a Baptist women’s organization in Delaware. My friend was a caretaker for an elderly woman who had once belonged to this congregation.  The shawl had come from across the nation and was a very special gift.   I felt that it was symbolic of the comforting presence of the Holy Ghost at a time I needed it the most. I wore the shawl to keep me warm when chills from the chemo drug called oxaliplatin made everything I touched or tasted cold to the touch, and to remind me that the Lord would be with me to both make critical decisions regarding my care and to comfort me.

I believe the decision to move forward with the upped Folfoxiri treatment has resulted in my tumors shrinking enough for a 2- stage liver resection surgical chance for a cure- the first of which happened on March 15, and the second which will take place next week on May 18.  Thus far, every hoop we have needed to jump through has been opened to us. 

The following song by The Mormon Tabernacle Choir, “He Shall Feed His Flock” reminds me of the peace I felt that day, the kind which “passeth all understanding” (Phillipians 4:7).

Beating the Odds

Today we celebrated Cinco de Mayo at Estrella's with the girls. In addition for an excuse to show them off in their traditional Mexican dresses, we were celebrating  an unexpectedly positive  pre-op consult with my liver surgeon. 

Today was the 3rd time I have met with my nationally-renowned surgeon, and these meetings usually fill me with dread as he is bound by law to discuss everything that could possibly go wrong as I go under the knife.  Today though, he began our meeting by saying that I looked much better than the last time he saw me, and his aura was bright and jovial instead of his usual intense and severe.  When I asked about the possibility of throwing a tummy tuck in, he just looked at Carl and said, "A tip to the male species; tell her she doesn't need it!"  He also said that I had a good shot at healing quickly, and that he probably wouldn't be seeing me much in the future, which would be a great thing. 

As we drove away from UCSD Moores Cancer Center, feeling more secure that nothing would impair the 2nd stage of my 2-stage liver resection, we reflected on all the odds we had to beat to get to this point in the journey.  Although we still have half the mountain to climb, it's worth stopping to take a look at the view from the half-way point.   

The following figure should help explain the points which follow.  The first section in the graphic below show that 47% at diagnosis have liver only metastases, which category I happen to be in:

  

• Among all people diagnosed with stage IV colon cancer, 47% have liver-only metastasis, meaning that 53% of those at diagnosis also have cancer spread to the lymph nodes system, lungs, or other vital organs. In order to qualify for a potentially curative surgery the cancer must be confined to the liver only.  Thus far, I have had 6 scans and MRIs to verify that my cancer has not spread elsewhere. 
• In addition to the cancer being confined to the liver, a patient must show a significant response to chemotherapy in order to qualify for the 2-stage liver resection surgery. Only 25% show a significant enough response. 
• 20% of those considered for 2-stage liver resection never actually receive the surgery because MRI scans reveal that the cancer is in millimeter-sized locations which CT scans do not detect.
• The first of the 2 surgeries is performed with a 10% risk of the surgery being stopped because additional cancer is found by laparoscopic cameras which could not be seen or detected by imaging (MRI and CT scans).
• After the first surgery is completed, there is a 20% risk that the cancer will re-grow or spread in the liver or other organs, thus preventing the option of a 2nd surgery.  

So, The combined probabilities are as follows:

47% x 25% x 80% x 90% x 80%= 6.7% chance of receiving a potentially curative surgery since diagnosis.  

AND HERE I AM, BEATING the odds, and fitting into the 6.7% that qualify for surgery!

Only here's the rub...the odds of the cancer not returning after the second surgery are only 10-20%.  But I have beat smaller odds already, so I have FULL CONFIDENCE I can do it again!

Besides, according to a scholarly and insightful article, The Median isn't the Message, by Stephen J. Gould, a late Harvard medical professor who outlived his own cancer diagnosis by 20 years, statistics should not be treated as a sentence.  Gould asserts that those with "positive attitudes, a strong will and purpose for living, a commitment to struggle, an active response to aiding their own treatment and not just a passive acceptance of anything doctors say"  also tend to beat those odds!

I join with the chorus of this optimistic song the odds are that I will be alright!

A Bittersweet Symphony

In the immortal words of Charles Dickens from his classic, A Tale of 2 Cities,

"It was the best of times, it was the worst of times." 

That is how I feel about this cancer fight.  Until I had chemo and surgery, I have never experienced such agonizing physical pain nor emotional turmoil.  Yet on the other hand, I have never experienced such radiant joy nor unconditional love, as I've felt the strength of my family, friends, and community fighting with me.  I can relate to the words of the Book of Mormon prophet Alma, who says:

"there could be nothing so exquisite and so bitter as were my pains....on the other hand, there can be nothing so exquisite and sweet as was my joy." (Alma 36:21)

Another ancient prophet, Nephi teaches that our very human nature and progression  demands that there be "opposition in all things."  Ups and downs are part of the natural course of life, but facing a life-threatening illness truly presents a stark dichotomy.  Just one of the many lessons I have learned from this experience is that we truly have to taste the bitter in life to savor the sweet. I love the symphonic melody to 90's one-hit wonder by The Verve,  "Bittersweet Symphony."

I can especially relate to the line: " I let the melody shine, let it cleanse my mind, I feel free now."

Because I have experienced a fair share of days accompanied by nausea, pain, and limitation, I absolutely rejoice in the days in which I have an appetite, energy, and can move around freely.  Today was a rather uneventful Saturday by most accounts. But I was able to get up early in the morning and actually jog the circle around my "Lake circle" neighborhood.

It was the first time in about 7 weeks that I could move around freely and feel the endorphins from a runner's high.    It was too overcast and windy to enjoy the outdoors, so the highlight of the day was going to Target as a family  and taking my girls to see "Kung Fu Panda."  Before bedtime, we laughed together as I told them about the silly parody songs I created as a child.  as there are so many evenings in which I have been too tired to engage with my girls, I truly treasure these simple, yet moments,

The Old Testament book of Ecclesiastes says it best:

To every thing there is a season, and a time to every purpose under the heaven:  A time to weep, and a time to laugh; a time to mourn, and a time to dance;

Of course these words are put to the timeless classic tune by The Byrds:

Cheers to a wonderfully simple day!

Stranger Than Fiction- My Diagnosis Story

This is a chronological play-by-play of all the events leading up to my diagnosis. I write about how I found my cancer, and how I coped when I received the news. I've included some pictures from the days of the events mentioned and some media that composed the background soundtrack of them.

Disclaimer: This post is long (all others will be succinct vignettes) but it may be worth reading for anyone facing a crisis.


April 9th, 2015
We have spent a few days in our old stomping grounds, Salt Lake City, both to see our nieces and nephews in a "Charlie and Chocolate Factory" play and to celebrate Carl's birthday in style at his graduate alma mater, The University of Utah.

In the evening, Carl and I go out to dinner at Tiburon, our favorite steak house from when we were Utahans for 3 years. The food there is richer than I'm used to on my Weight Watcher's regime. In the middle of the night, I notice some blood in my stool and ask Carl if he experienced anything similar.

"That could be serious," he says. "You'd better call Kaiser immediately and make an appointment for when we get home. I hope you're not going to die."

Carl is typically anxious. My symptoms temporarily disappear so I do not heed his advice.

April and May, 2015

We have been renting for far too long, and it's time to make a permanent change. We think about returning to Utah. I loved being near my sister and all the recreational activities which Utah had to offer, and I'd missed it since we'd moved back to my hometown, Fallbrook. Carl puts some feelers out through his parent company, Zion's Bancorporation and doesn't seem to get anywhere. We decide to look for a home in our neighborhood. We find a model home that we love, and decide to put our name in the hat. If we fall out of escrow, we'll know that it's not meant to be and that we should explore another path. But we don't fall out of escrow, and the process of finding a home and closing on it takes a mere month. I continue to have some blood in my stool very occasionally, but I'm so busy juggling my job, parent volunteering, and decisions about our housing situation that I barely notice.

June 22, 2015

We just closed on our new home last week and we have spent each exhausting day hauling loads with my parents’ pickup truck. Since the move was just down the street, we didn’t bother with a UHaul, though maybe we should have. We have just returned from a trip to Rexburg for a BYU-Idaho faculty conference, and I still have a month left teaching Spring semester, and I’ve agreed to take on a summer contract, as I want to be able to pay for our new furniture. I don’t have time to go to the doctor’s office, but I’ve been having some minor digestive irritation, so I do take the half a day to go in. The family medicine practitioner suggests that I likely just have something that requires Preparation H, and writes a prescription for suppositories and sends me on my merry way. She says to return in a month if the prescription doesn’t take away the symptoms. I go home and get on with my unpacking, my home decorating, my work, and then a very busy month with a steady stream of house guests in conjunction with a family reunion I help my parents host in Ramona at the end of July. 

August 4, 2015

I’ve been almost too busy to notice, but the external medicines the doctors prescribed aren’t really working. I can’t help thinking that this is an internal, not an external issue, though why would I want to complain as it seems that lately, I have no need to diet. I’ve worked hard the entire year to make my lifetime Weight Watcher’s goal. Those last 2 pounds took me 3 months to lose! Now I seem to stay the same no matter what I eat. Hmmm. This is very unlike my body. So, I do make that follow- up appointment. The 2nd primary care physician I see says it’s likely an internal hemorrhoid, and it’s probably nothing to worry about, but she sets me up with a sigmoidoscopy with the gastro-internal medicine department just as a precaution. The appointment is for August 10th.

2nd Week of August, 2015

I have to move that appointment back to August 14th, because it requires a day of fasting. I’m hosting a birthday dinner for Carleigh and my friend Barbara on August 9th, and it might be awkward if I’m serving guests while sipping my magnesium citrate.

This appointment is really inconvenient. A new school year is about to start, and I’m tempted to push it back even 2 more weeks when I can block out 2 days. I even tell Carl I want to delay it to which he immediately says "no, no way, keep this appointment". I also tell my mom about my upcoming appointment and she convinces me that I’d better keep it.

August 14, 2015

I leave my girls with my recently retired dad, and take off for my appointment around 9:00 AM. Carl has a very busy day at work, and I have verified that I don’t need a driver for a sigmoidoscopy, so I see no reason to bring anyone with me. I’m hungry from fasting all day yesterday and hope to get this out of the way so I can get on with planning for Carleigh’s birthday tomorrow and school starting Monday. 

As soon as I change for the procedure, there is a tension in the air which I hadn’t anticipated. The PA conducting the exam asks if I would like the nurse to hold my hand, and I respond that I should be fine. No local anesthetic is given, and as soon as the exam begins, I do reach for that nurse’s hand. They have me positioned to where I can also view the exam as it is happening, and the sight isn’t so pretty. I’ve never been so comfortable with anatomy, not even my own. Although it only last 5 minutes, it is a painful, invasive 5 minutes, and PLEASE MAKE IT STOP is all I can think about. It is eventually over, and no sooner do I gain my composure than the PA says solemnly,

“As soon as you get dressed, we need to talk.”

Talk? Talk about what? I put my shorts and short-sleeved shirt back on. It’s 100 degrees outside, and I hadn’t thought to bring a jacket, because it doesn’t occur to me that all doctor’s offices are antiseptically chilly and that I would have to sit for 10 minutes shivering in lonely anticipation as I awaited a verdict on my health prognosis.

When the PA returns, he apologizes for keeping me waiting, as there was much paperwork to gather. He shows me the X-ray the camera took, and begins the conversation with the words:

“This is a difficult conversation to have.” Hmm, this can't be good.

He tells me that although he needs to wait for a doctor and a biopsy to confirm anything officially, he sees a “large suspicious legion, or colon mass” which has him very concerned. He lets me know that his 16 years of experience has taught him that at the very least I’ll need to have a surgical procedure, and that cancer is a real possibility. He has ordered me a colonoscopy for Tuesday, and a full body cat scan and a surgical consultation for Wednesday.

I call Carl and he is in a work meeting. I call my dad and let him know that I’ll be a few hours late as I have to pick up my lavage solution for the colonoscopy prep. I go to Walmart and walk around in circles dizzy from the heat, hunger, thirst, and this incredibly disturbing news. I’m not sure if I even got those school supplies on my list. Once I am able to get a hold of Carl, all he can do is cry on the phone. He immediately knows what this means, because as soon as he hears the word "legion," he plunges into internet research. But we pull ourselves together, because tomorrow is our Carleigh’s 7th birthday. We go to my parents and discuss the ominous possibilities with them. My mom says that even if it is the "Big C," that everything will be alright.

Saturday, August 15, 2015

Today is a marathon day. It is Carleigh’s 7th birthday and her first soccer game on a large field with referees. We volunteered for snacks as cupcakes are in order of course! My sister makes a surprise visit into town. She wanted to drop by yesterday, but I was inconveniently detained at the doctor's office for several hours longer than anticipated.

Right after the game, we head to Disneyland with our close friends, the Hinderliters. Robin and I have been friends since 8th grade and now it’s so much fun to see our pair of daughters- Carleigh and Lily- age 7, and Carissa and Abigail age 4 feeling the same friendship. Despite the worry that swells over our heads and the sweltering heat, we can’t help but smile as we take in the sight of these 4:

 

As we are on "Pirates of the Carribean" we confide yesterday's news and our fears to Robin and Kurtis. They offer their support and their confidence that all will be alright. We laugh about old times and rejoice that our 4 little girls are such good friends.

Monday, August 17, 2015

Carleigh has her first day of school and I go to Carissa’s preschool orientation as I begin yet another liquid fast.

The PA calls me to let me know that he has a biopsy result, but it is inconclusive. He is still very worried and the colonoscopy should be telling. That evening, I spend no less than 4 hours drinking that saltwater lavage solution. It is hard to keep down, and I do need the cooler which Carl set near the counter to wretch in. I feel like Dumbledore in the 6th installment of the Harry Potter series. Harry must make him drink that bitter potion as he prepares for his death.

All Carl could do is hold my hand and encourage more and more drinking of that foul stuff. I have to get up at 4am to begin the process again. 4 more large glasses at 4am. Carl is up with me as he has been in a state of total panic since the previous Friday's news.

Tuesday, August 18th, 2015

I dress in robes and they lay me on a gurney. I feel an instant wave of panic as I remember being wheeled into kidney surgery as a 3-year-old. Thankfully, though, they put me under, and I can only faintly hear their voices. Once I am more conscious, I learn from the GI doctor that a cancer diagnosis is a real possibility, but we still need to wait for a biopsy to confirm this. Carl and I comfort ourselves with the prediction that a surgical procedure should take care of whatever this tumor is. The doctor's last words were "..hopefully surgery" as he said goodbye.




Wednesday, August 19th, 2015- A Fateful Day

Another long morning at Kaiser. I’m to go fasting again. First we meet with the surgeon. We look up her credentials, and see that she has the highest, but not much of a bedside manner. She gives me another exam (this time they don’t put me under though), and it is another painful 5 minutes. She tells us that although there is no biopsy to confirm it, she would be very surprised if the biopsy showed that it was not cancer. We talk about setting up surgery within the next couple of days, yes days. They wanted to remove it within the next 5 business days. I am thinking this ordeal will take a few months, but we’ll get through it, hopefully by Christmas.

No sooner had I grabbed a quick sandwich then it was time for my cat scan. It was originally scheduled for 4:00 that afternoon, but they were able to move it back for us so we didn’t have to make 2 trips. They had trouble finding a good vein so it took awhile to get set up. Then, I lay still as my body was pushed back and forth through a tunnel for about 10 minutes, while an automated voice told me when to breathe in and out.

We were told we would get results within a couple of weeks.

One more surgery prep prescription and then it was time for us to head out. Although we have a cancer diagnosis hanging over our heads, we are near Target and I need to find soccer cleats for Carissa, and a ballet leotard for Carleigh. I am not having any luck finding either, and then my cell phone rings with a number I do not recognize.

The voice on the other line belongs to the surgeon whom we’d seen just a couple of hours before. Her first words, “I’m sorry to have to tell you this,” are ominous, but do not prepare me for what would come next. Bear in mind that I have nowhere to sit down. From what I can recall, the dialogue went something like:

“The biopsy came back, and just as I suspected, you do have colon cancer. And we have decided to go with chemotherapy instead of surgery first, because the biopsy revealed too many tumors in your liver to count.”

"My Liver?" I say in complete shock. Carl immediately knows what this would mean as he had spent the better part of the past 3 days reading every journal article on colon cancer.

I don’t know what I say next, except that Carl urges me to ask about the stage and then the name of the tumor.

“It’s Stage IV,” says the surgeon.

“What, Stage IV??!!!!!” I manage to squeak.

I have nothing to write with, but between Carl and I, we figure out that the name of the cancer was adenocarcimona - a common type of colon cancer, but quite rare, even "incalculably rare" for someone my age, as we were later told by a doctor on the phone.

“Sorry I had to tell you over the phone instead of calling you back into the office because your treatment plan will require immediate attention and alteration, but I thought you’d want to know as soon as possible,” said the surgeon.

Hmmm, why didn’t she call us back into the office? I’m not sure if I can ever go into a Target again!

We get back into the very hot car and I start freaking out. I remember this Oprah episode I saw where this lady knows she has terminal cancer so she spends all her remaining time videotaping all the life’s lessons she hopes her 6-year-old daughter will learn. I tell Carl I’ll have to start working on those; not a good thing to say to a husband who has just been hit with a bomb. Carl, emphatically insists that what I am saying is ridiculous and that we are going to fight this and do everything we can to get this out of me. He is driving on the freeway, tears running down his face declaring that we were going to fight this, with everything we have.

Carl texts his family members immediately. Well, it’s not fair if my family is the last to know, so I call Dad first, who is now retired and home, and then I call my Mom on her cell at work (an action I later regret). Mom has to leave work immediately, and takes off the rest of the week; not a great move for a Kindergarten teacher on the first week of school. On her way out of the school crying, she runs into some of my friends, and the news travels quickly. I call my sister Natalie and she starts sobbing immediately. I get a hold of my brother Clint later who says, “Hey, How come I’m not crying,” but he gets in his car and starts driving the 5 hours from Los Osos to Fallbrook to see me. I miss my brother Seth’s call but reach him by the next day or so.

By evening time, it seems that all of the Bonsall Elementary community has received the news. That evening, my church leader Bishop Spackman, my parents, and my in-laws Winn and Susan Rindfleisch, and sister-in-law Shanna Riches all gather together so Carl can give me a blessing of healing, wellness and comfort as our family faced this difficult burden.

Within the next few days, I call all those close to me before I post the news on Facebook. Some of my friends cry on the phone. Some calls, such as those to my Aunt Pam and my grandma are met with weeping and wailing. I am deeply touched by how much people care, but shaken at the dramatic turn my life has taken. My beautiful daughters continued on with life seemingly un-phased at all by the news. Their faith, confidence in our good creator, and pure belief is the only thing that kept us from breaking down. We are at a complete loss, have no idea what to do other than to wait for the August 24th appointment with Kaiser Oncology.




August 21, 2015

My sweet neighbor and friend, Lindsey Cookson brings me her juicer to help me start consuming nutrients for the chemo that lays ahead. Carl's co-workers send gifts for me and the girls. This will be the first of several gift deliveries.















My best friends from high school, Laura and Robin come and kidnap me and take me to our old Fallbrook hangout, Denny's. As soon as Laura heard the news, she got in her car and drove down from LA. We laugh until we cry as we reminisce about our old high school shenanigans and washed out flames. Even though I feel like I'm developing an ulcer (which I eventually did), I still find some comic relief in the company of my oldest friends. 

August 22, 2015

Tonight Carleigh is performing a singing and dancing routine to Rachel Platten's "This is My Fight Song." This is a pure coincidence; she learned a dance to the song in a summer dance camp. But the song couldn't be more fitting in light of recent events. The song becomes our mantra through the fight. My sweet sisters-in-law, Shanna and Meredith come over to help prepare Carleigh and me to sing a fight song. They have spent all day preparing a special banner for my mantle in the colon cancer colors, a wreath for my door, and cart for the front porch with sanitary supplies for guests to wash hands. It is all Pintrest perfect of course!



Carleigh's performance is spot on! Carissa dances along on the sidelines. At this point a handful in the audience has heard my news, and they grasp that the "Fight Song" has a deeper meaning for our family.

August 20-23, 2015

After a follow up call with the GI doctor who performed the colonoscopy, I again learn that the disease is common for senior citizens but incredibly, "incalculably" rare for someone under 40. I’ll be 39 in a few weeks, but at present, I’m still 38. How did this possibly happen?


The foreboding chorus of Tori Amos's song, Cornflake Girl replays over and over again in my mind:

"This is not really happening, not really happening, hey, You bet your life it is."

On Sunday, our close family friends, the Ormes come over to my parents for dinner. Steve Orme has battled lymphoma for close to 20 years, so he has some good insights and wisdom to share. The piece of advice I most remember is, “Don’t let any doctor give you a prognosis, because they are not God.” This proves to be helpful for what awaits tomorrow.

August 24, 2015- The Pathology Report

Today I meet with my new oncologist. Instead of having to remember medical terminology, my official pathology report- which has all the information from my colonoscopy and cat scan is documented and shared with me. She looks younger than me. She is new to the Kaiser team and likely recently finished her residency. She shows me my CT scan, and points out that all the dark spots that appear in my liver should not be there. It is clear from this interaction and future ones that the best way to do her job is to give me the bleakest statistics on colon cancer possible, so that maybe if things go better than the worse-case scenario, I will be pleasantly surprised.

At this appointment, I hear the following:

-If I chose not to treat my cancer, it would take me within 10 months.
-There is no cure for this cancer, and surgery is not an option, so I will be on chemotherapy for the rest of whatever is left of my life.
-The chemotherapy at best will prolong my life.
-I may be around for a few years to come, but not decades.
-I will definitely lose my hair.

As I’m hearing this, my mind turns to the 3rd act of the opera, “Carmen” when she reads her fortune cards and exclaims: "Death!!” in soprano staccato. (Not that I’m an opera buff or anything, but I did see my namesake opera in both San Diego and Salt Lake).

I completely break down in the office. Carl once again, in front of the doctor firmly declares that we were going to knock this right into remission, and that we as a family have received a spiritual confirmation that this would happen. Although his knees were about to buckle from grief, he somehow was able to find the strength to provide this optimistic declaration.

Once the appointment is over, I'm sent to the lab to get blood work done. I am shaking with sobs. When the lab tech asks what is wrong, all I can say is "Cancer diagnosis." Thankfully, I have Carl and my dad to lean on to walk me to the car.

I think of one of my favorite movies- “Stranger than Fiction” (Will Ferrell’s best performance ever). The plot is a writer's dream, or nightmare- that of a character whom an author has created co-existing with a real- life individual. Will Farrell's character, Harold Crick begins to notice that a female British voice is ominsciently narrating his dull life with "much better vocabulary" than his own voice could construct. Harold works as an an IRS agent and lives a lonely, monotonous, and uninspiring life, but it takes an unexpected turn when Emma Thompson's character, author Karen Eiffel begins to take hold of his mind. Then, just as he starts to let lose, find love, and start living, Eiffel's voice narrates, "little did he know that this simple, seemingly innocuous act (of re-setting his broken watch) would result in his imminent death."

I feel to shout out like Harold Crick, "Wait! What? Why my death? When? How imminent?"

Next, Harold consults a literature professor, Dustin Hoffman's character, Jules Hilbert, who tells Harold that he must find out if Eiffel intends for his life to be a tragedy or a comedy. When Harold learns that Eiffel's characters always die a tragic death, his doom seems impending. Yet he continues to live and to love. Although Eiffel has masterfully drafted his tragic death, Harold proves to be a dynamic character. His watch intercedes once again to get him to the bus stop 3 minutes early so he can save a a young boy from a bus accident. Harold ends up injured in a hospital, but he lives. He becomes a hero and not a victim. A tragedy turns into a comedy.

As we leave Kaiser and I bemoan the oncologist's bleak predictions, My dad says,

“I just don’t buy it.”

I don't want to buy it either.

August 26, 2015
In the midst of everything that's going on, I need some major dental work done, possibly a root canal. I have heard that I can't do any dental work during chemo, so I'd better get it done now. As I am getting work done, Carl and my mom are working together to try to get my chemotherapy started, and Carl is concerned about not delaying a single day. Thankfully, I only need a filling. I usually like the background music at my dental office, as the assistant, Morgan puts together some great Pandora stations. Right now, the song by The Band Perry is playing in the background. I have always liked this song, but presently the lyrics hit too close to home, and I am stuck in a chair with my mouth wired open and can't simply change the station.


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I never imagined I would be facing the possibility of "the sharp knife of a short life."

The words "Gather up your tears, keep em in your pocket, save 'em for a time when you're really gonna need them" are especially grating to me right now. 

1st Week of September

I have tried to keep up with my contracted requirements for BYU-Idaho in mentoring my students through the summer term 7-week intensive writing course. Yet it becomes apparent that I can't focus as my phone is constantly blowing up from concerned friends and family members, and I desperately need time to research treatment options. I realize that I will have to pull out early, and have another instructor take over my course. Even in my dire circumstances, my conscientious nature resists doing this, but it soon becomes apparent that there is no other option. I let my students know that although I wish I could get them through the research paper unit, that I would now need to do research for myself on treatment options.

My sister Natalie comes down to comfort me and to help out. As an early birthday present, she takes me to see the play "Shrek" at our favorite haunt, The Moonlight Amphitheater. The play is engaging and fun, but I can't relax. On the drive home, I break down and ask her if she thinks I will have enough faith and positivity to beat this. Natalie reassures me that I won't bear this burden alone; but that the faith of my loved ones would get me through this.


September 2nd

We take the advice of friends and acquaintances who have dealt with cancer diagnoses to get a second opinion. My cousin, Micalena, an oncology nurse recommends an oncology team at UCSD Moore's Cancer Center. Carl's alma mater is UCSD, and it seems more practical than going to the City of Hope in LA or MD Anderson in Texas. Our appointment is set for September 2nd, and it is critical that we keep it because we don't want to delay chemotherapy, which is scheduled to start on September 9th, yet we want this second opinion before we jump into treatment. The appointment is with Dr. Eric Roeland. The administrative assistant calls and says that Dr. Roeland has a conflict and that the appointment may need to be rescheduled. Carl uses all his swaying power to keep the appointment, and we go. My dad's retirement could not have been more timely. He accompanies us to most appointments and brings a white notebook entitled "Carmy's : Cancer Treatment" and takes copious notes.

From the moment we meet Dr. Roeland, we like him much better than the Kaiser oncologist. He is pleasant, and has a sense of humor. He takes a lot of time to draw a diagram and explain the physiological components of my diagnosis in layman's terms. When I ask him why there are not more colon cancer marker screenings for younger patients, he answers that doing so would generate a lot of false positives and would not be globally sound.

He adds, "You just have incredibly sh*tty luck."

I know I have colon cancer. Does he really have to rub it in? But there really isn't any other explanation on how I got this. I have no family history, I'm not over 50, and we find out later in September from a geneticist that it was very likely from a random genetic mutation that took place at my conception.

But Dr. Roeland radiates intelligence and empathy, and we make plans to become his patient in January once we can switch our insurance. For now, we can take comfort in the fact that Kaiser will begin with the same aggressive Folfox treatment that UCSD would do. We will be able to begin the fight now.

As we are leaving he says, "Go kick its a$ then."

He uses colorful language, but with good humor. His well-wish confirms that I can act in this fight; I'm not a mere victim or an agent to be acted upon.

In the coming days, Carl and I gather more information on my condition from knowledgeable friends, family members, and reliable MD sites. I find out that although the diagnosis is quite serious, it is not necessarily terminal with the treatments available in 2015. The preschool receptionist, Melinda's mother beat Stage 4 cancer at age 80!

With Carl's brother Adam's help, who happens to be in medical school, Carl finds that I hit on 10 out of 10 positive prognosis characteristics for stage IV colon cancer. Something he repeats to everyone he talks to about my diagnosis, (sometimes ad nausiem!!) But importantly keeps stating that this could mean something significant regarding my prognosis, something we wouldn't realize until January of the upcoming year. But for the time being, we knew that over the next six months, my fight song would be the cancer killing kryptonite, known as Chemotherapy.

My old neighbor and friend, Lucy and her sweet mother come to visit me in the week that follows. Lucy's mom tells me a story of getting a grave throat cancer diagnosis as a young mother. She was given 2 years to live, but she believed that she would heal, so she did.

Although there were factors about this cancer I could not control, I did have control of my thoughts. I didn't have to buy into these bleak predictions, or accept the fact that I was doomed because I had "sh*tty luck." Neither the current statistics nor the doctors were controlling my life story like Harold Crick's narrator. I thought of the words to song I'd known since my childhood, "My Story" from "My Turn on Earth."

The 70's melody is cheesy, but the message is perfect:

My story, A wonderful story of sadness of glory will be written by Jesus and me.

And my story will be a comedy, not a tragedy.