Growing up in Fargo

My story is not unlike so many Xennials; well most of it anyway…

I grew up in the largest town in North Dakota, and we Fargoans make sure all other North Dakotans are fully aware.  While we may be the largest, and growing at a rapid pace, we are still quite small in comparison to major cities throughout the country, encroaching on 200,000 including the surrounding towns.

Fargo has always felt to me like a safe, sheltered community to live.  We had all the needed amenities while having our small neighborly community.  Fargo nice, is a real sentiment. 

Our neighbors, classmates, church congregants, and co-workers truly care about one another. 

This community has been an integral part in influencing my character and has taught me to trust others and treat others with kindness.  Let’s now start at the beginning of my childhood to give reference to my white-fenced, “normal” American upbringing.

My parents, young sister and I, moved into our house while I was in kindergarten.  This four-level split home was just the right size for our young family; in close proximity to our elementary school and large riverfront, forested park.  My sister and I were quite active and loved to be outside and quite often you’d find us on a playground climbing off our energy.

My brother was born when I was nine, another friend to hug and hold, and get into trouble with.  My siblings and I were like any other kids in America in the late 80’s and early 90’s.  

We devoted most of our time to friends, had a mild obsession with Disney cartoons, ate sugary cereal and tried new activities to peak our interest.

I continued to go through my teen years with opportunities to make friends and often grouped together to talk about boys and fashion.  In sixth grade I had the pleasure of getting braces.  An essential part of the teen years.  I also started to get engaged in music and sports.  I think I had a healthy balance of physical activity and thanks to my mom, a balanced diet. But managed to sneak in desserts more often then I should have.

During my senior year while contemplating the next steps of my life, my youngest, and most adventurous sister was born.  What a blessed opportunity to be of an age where I could really enjoy watching her grow up.  Babysitting her at the age of 17 was an eyeopener and gave me firsthand experience why I should wait to become a mother myself.

I have always been anxious and realized while I might have aspired to attend a college far from home, I was not yet ready to venture out on my own.  I decided to stay local and continue my passion and education in music at Moorhead State University.  Daily band practice gave me the chance to improve my skills while meet new people with similar interests. 

Relationships that are built on communication really do last through anything

It was at MSU that I met my husband.  At the time we had mutual friends and tended to see each other in passing in the music department.  Jarod was working towards a degree in composition while I a music education degree.  Both of us were fully engrossed in our musical degrees that it wasn’t until my senior year that we decided to go out on our first date.  While I viewed our new relationship as exciting, I also felt safe and like I’d known him forever.  Relationships that are built on communication really do last through anything.  Jarod has since told me that he knew he was going to ask me to marry him the first time he saw me.  How romantic!

Jarod and I began our careers not in music, but at an outsourcing company that had recently formed in Fargo.  Jarod continued to “climb the ladder” in quality, but I was content working on the front lines.  Jarod has since moved onto to his recent role working for a firm in New York, but I’ve stayed working at the same company for 11 years.  I now work as a vendor for a company that truly provides me satisfaction and has created lifelong relationships that I am so grateful to have.

That’s how the perfect life is built, isn’t it? 

We have three young children.  Callum is our oldest.  He is so analytical, just like his father.  He always needs to know the “why” behind everything and has the biggest heart of anyone I know.  What an adventure it is to become a parent.  I felt ready to take on the responsibility of a child at the age of 25.  Parenting is such a huge responsibility and much more than I had anticipated for.  Nothing like babysitting!

It was just the three of us learning together how to become a single unit.  Brittyn blessed our small family with her beautiful presence next.  She is so much like me, it is scary.  A miniature version of me.  Now I know how my mom felt when I refused to clean my room, cried every time she combed my hair and beamed with pride when she created a piece of art all herself. 

Camden is our baby and we certainly treat him this way.  We all love to smother him in hugs, look forward in anticipation as he learns new tricks, and all believe we are his favorite.  He is our jokester and in his three-year-old way, makes us all laugh hysterically.

This life I have built for myself is the American dream.  A supportive husband, children I would move mountains for, a career I enjoy and a safe community to live in.  Every blessing I have, felt like a gift from God.   Want I’ve wanted and achieved in life was because I have been an honest, loving, and hard-working person, right?  That’s how the perfect life is built, isn’t it? 

September 6, 2016, the day my world came crashing down. The days leading up to this day started at the ER.  I had put off going in to the doctor for symptoms that were increasingly hard to ignore.  The final push to get me into the ER was rectal bleeding.  And not just a small amount, a terrifying amount of blood that finally got my attention. 

How did I just ignore all the symptoms I had been experiencing for over a year?  It is certainly easy to look back now and punish myself over and over again for not speaking up sooner. 

How did I just ignore all the symptoms I had been experiencing for over a year?

If only I would have not been embarrassed, quick to think that this couldn’t happen to me, and consumed with my family and work and not taking care of myself.

After the initial colonoscopy found a tumor, I had another one done to verify size.  I also had CT scans and an invasive MRI, not for the faint of heart.  I traveled to Minnesota to get a second option from other oncologist on the treatment regimen.  I had no idea at the time what was all involved in treating rectal cancer and wanted to gather as much information as I could to make an informed decision.  I ended up choosing to be treated locally when I heard the treatment would be the same “gold standard” at both locations.  I again didn’t want to affect my family’s life too much; wanted the kids to continue their lives as normally as they could.

Neoadjuvant Therapy: Chemoradiation, 5-FU
1st Line Chemotherapy: FOLFOX

Treatment consisted of 28 rounds of radiation in conjunction with two types of chemo that were given in small doses right into my port.  Once this round was done it was off to surgery.  The tumor was removed, and the rectum resected.  For the wounds to heal, I had a reversible ileostomy.  If anyone wants to know more about how weird, inconvenient, and downright gross this experience is, I’d be happy to provide more details.  Once I had recovered from surgery I was on to the last weeks of chemo.  Luckily the side effects were minimal compared to many others who go through cancer treatments.  This allowed me to continue working and provided just the right amount of distraction.

The last step was to reserve the ileostomy, and all would be cured.  I had been informed by my surgeon and read on many forums that this major surgery would have long lasting negative effects and would take years to fully heal.  They were completely correct.  I had to struggle with incontinence, severe pain and so much more.  After two years of healing, I still have episodes and am not in any way back to the person I was. 

“No evidence of disease”
Follows up consist of check-ups every three months and a CT every six.   My CEA (carcinoembryonic antigen) right after surgery was as close to zero as possible.  In early 2018, it had crept up to 2.5, which again, is not high but was trending upwards.  I was told we’d watch it but since no other symptoms were present I shouldn’t worry. 

Fast forward to August of 2018.  I had another routine CT and brought the family with to hear from the oncologist.  I still felt fine but had a nagging pain right under my right rib.  It’s amazing after all I went through that I’d chock up pain to something that was easily pushed aside, but yet again I did. 

The CT had happened that morning, so the radiologist had not yet provided the test results.  While the oncologist started to view the scans, he seemed to pause longer on the mid-section of my body.  He kept going back and forth through the same area.  I knew this wasn’t going to be the outcome I had come to expect.

I’m sorry, Sara, but it looks like your cancer has spread,
and you now have a lesion in your liver. 

My heart again sank deep into my chest.  My husband and children saw me go white and automatically my disposition changed to a feeling of hopelessness.

But just as the first time, it wasn’t time to retreat, withdraw and go into isolation.  This time, it was another chance for me to tell my story and make a difference in the lives of others.  God always provides exactly what you need right when you need it.  He has continued to provide me unexplainable peace, a wonderful support system and this time, a need to take action.

Forming Love Your Buns

As a direct result of all of this, in September of 2018, my husband and I started Love Your Buns with the help of some great friends and family. The significant rise in the last 25 years and the forecasted near-future growth in incidence for colon and rectal cancer in young adults (20-49) is truly startling...worrying...and honestly is downright unacceptable.  We had to do something!

As a demographic, young adults are vulnerable to undetected growth of colorectal polyps and tumors.  The rise of incidence within young adults is coupled with the fact that a significant majority of young adults do not have any form of access to colorectal cancer screening (at least under the specific definition of screening), and as a result – they can only advocate for themselves, when symptoms arise. Key problem being, once symptoms arise, colorectal cancer is no longer the easily treatable condition that it is when found as a polyp or early stage tumor.

With all of the materials made available and the national exposure from the many highly respected organizations and medical professionals - why didn’t I have the resources at my disposal before my diagnosis to help me realize what I was facing?  During the period I was experiencing so many abnormal symptoms – why didn't my Google or WebMD searches result in quality information on my screen from Fight CRC or Colorectal Cancer Alliance, or others?

There are obviously many possible reasons for this.  Maybe I was asking the wrong questions. Maybe it is the simple reality that change can be slower than we may want or need it to be.  This seems to be especially true in the medical community. 

It may also be that this very important information around the links to even the obvious symptoms (bleeding), the biggest red flags (blockages, major changes in bowel habits), or likely even more so, the rare signs-of-symptoms that COULD associate with CRC (for example even, the presentation of benign lesions or skin changes in various hereditary disorders tied to CRC) are not being properly disseminated explained to health care providers that act as the first line of defense for young adults (such as ER physicians or primary care physicians).

It’s also not information that is making it out to social media, to advocates, family or friends. We all need the education.

What has happened since then?

Since August 2018, a lot has happened! We created Love Your Buns, and embarked on a mission to educate the world about young onset colorectal cancer. I had a liver surgery in 2018 to remove the metastatic tumor. You can read that blog update here, and more about our time in New York, here. After returning home, and a few months of recovery, scans unfortunately showed new nodules in my lungs, and also possibly returning in my liver.

Biomarkers – Genetics - 2nd, 3rd and 4th Opinions
Not long after we discussed the new results, we reached out to my doctors at Memorial Sloan Kettering to see if they could provide the results of my IMPACT genetic testing, and of course, ask also to get a second opinion from them. It seemed from the study results that my cancer was not caused by any known hereditary genetic issue, but instead through mutations in the NRAS, APC, SMAD4 and TP53 genes. 

In Pursuit of New Trials
Amongst all of that, we had been looking at a trial that was very intriguing, using immunotherapy and a personalized neoantigen vaccine.  At that point, the MRI and CT were inconclusive for the liver spot – and the lung spots were tiny, and well below 1 cm in diameter.  So, one of the clinical trial doctors advised – “why try to treat this like cancer if we haven’t confirmed it should be treated like cancer?”

So we took our time to find the right treatment - but also to go to Disney World!

Unfortunately after visiting Columbia, registering for the trial, then going through a number of weeks of fighting to get the correct samples from Sanford and MSK, and additional lab work to the trial coordinators, and then yet waiting additional weeks for the initial vaccine testing, the trial coordinators found that my tumor wasn’t expressing enough neoantigens, and we had to go back to plan B.

2nd Line Chemo - FOLFIRI, Avastin

Plan B treatment was long, about six months of FOLFIRI regimen, leading to a feeling of status quo. But yikes, it wasn’t a fun status quo - every two weeks I would get chemo on a Monday, and feel absolutely terrible for about 5 or 6 days. Then I would feel iffy for 2 days or so, then would feel pretty good for about a week. Then we’d repeat. This lasted for 12 cycles, from late February through the end of July, 2019.

How well has this hideous chemo been working?
In early August, 2019, I had my latest CT scans. The results were a combination of confusing, and difficult. On one hand, the existing lung nodules appeared to have been mostly stable from the April scans - and only four were mentioned in the scan and had grown slightly, but the liver results were very different. The August CT reading suggested six new lesions on the right side of the liver, and the prior noted lesion on the left side had no mention. So what the heck happened? In the end it was determined that there weren’t actually any new lesions on the right side, but that we should treat the lungs and the left side of the liver in some way.

After assessing the situation, and reviewing all of the options, we elected for me to undergo SBRT radiation therapy in Fargo for the lung nodules, and a liver ablation in New York. That seemed to work pretty well for what was there, but the side effects were challenging.

Since then, in early 2020 took a break from chemo and procedures for a few months and enjoyed the holidays with my family. Then in 2020, it was apparent that I needed to get back on some form of systemic therapy So in March and April, just in time for COVID to really ramp up, I started a rechallenge of FOLFOX, with Avastin. I did that for quite a while, but with rising CEA and tumor growth occurring again, we then amped it up with a rechallenge of FOLFOXIRI until it was no longer tolerable, then moving to FOLFIRI.

Eventually transitioning to hospice care in September of 2021 - I have fought the fight that I can. The decision wasn’t taken lightly. And really it was only when I felt completely backed into a corner with no additional treatment options that Jarod and I conceded and halted plans for any additional treatment. You can read more about that experience and my thoughts on it here.

Thanks for reading my story. You can read in more detail here.

It’s undeniable - my story is becoming all too common for my generation.  Colorectal cancer is on the rise in young adults, particularly rectal cancer, and I continue to have a passion to spread the word through Love Your Buns.  I want this organization to make us all aware of the warning signs of rectal cancer.

I also want readers to feel comfortable talking with their doctors about a sensitive subject.  If only I would have listened to my gut and pushed aside the embarrassment.  But, I do believe I am in a unique position to try and help remove the stigma, educate, and help raise awareness to all young adults. I hope you will consider supporting our efforts by telling your family and friends, and by giving through your time, support, and donations. 

Update 10-15-2021

Love Your Buns founder, Sara DCamp, passed away peacefully on Friday, October 15, 2021 surrounded by her loving family, after a courageous five-year battle with rectal cancer.

Sara was diagnosed with rectal cancer in September 2016 and was confirmed to be in remission in June 2017. Her cancer returned in August 2018, which led her and her husband Jarod to co-found Love Your Buns. Since its formation, LYB has worked to raise awareness of young-onset colorectal cancer, empower patients and caregivers with knowledge and resources, and programs to improve the quality of life of patients and survivors.

Her efforts with LYB have been highly impactful, lauded as having saved lives and improving the patient treatment experience. She received the Colorectal Cancer Champion of the Year award in 2020 from the North Dakota Colorectal Cancer Roundtable and was a YWCA Woman of the Year nominee in 2020.