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.