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!