Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based 

 , volunteers her time with the online patient-led support community 

 , and blogs about her often adventurous experiences of living with chronic cancer at 

Sarah DeBord

I like the idea that I can have control over what happens to me at the end, through not only my health care directive, but in working with my hospice team when the time comes. I feel empowered enough as a patient to understand the role palliative care plays in my quality of life while living with metastatic colon cancer, and the role that hospice will play when the time comes to end treatment and enjoy the time that remains as comfortably as I can.

I've never felt the need to be buried. Partly because I'm a practical gal who understands the extreme expense, but also because I have no central place I call home. I have lived from sea to shining sea and have family scattered with the wind. Permanently leaving my physical body somewhere for the sake of having it somewhere just doesn't make sense for me. I also don't want to put the additional financial burden on my family or take up limited space in the ground for the sake of tradition. This made opting for cremation an easy choice.

Another easy choice for me was choosing to donate my body to science, or more specifically to my local university medical school. Like a last parting gift of gratitude to science for keeping me alive far longer than it should have, I want to return my body to science as a teaching tool for the next generation of providers who will go on to care for and save the lives of patients.

I'd like to think what's left of my underweight shell will be an eye-opening exploration into the ravaging beast known as cancer. There will be nothing beautiful or whole worth preserving, so in a final act of paying it forward, I want what's left of me to help advance understanding, and based on a few boxes I checked, potentially help research long after what remains has been turned into remains. I want this beaten body to open the eyes of youthful medical students to their own immortality, the indiscretion of a horrid disease, and the destructive power of cancer.

I've filled out the necessary forms from the university medical school website and included them in my health care directive. I've also discussed it with my immediate family so there will be no shock or disappointment when my final wishes come to be. My body will be cremated when it has served its purpose, and my ashes returned to my children in due time. From there, my boys know what to do.

It's a conversation we've had many times over, and one we all feel comfortable and free to talk about as if it was part of casual conversation. Not everyone will be comfortable talking about their death, even those living with metastatic cancer. And not everyone will understand how I can consider these discussions with my children to be casual. But that's what I want. I want the stigma and discomfort of death to be non-existent for them. They know it will be very sad for everyone and they will be devastated, but I want them to go on with life knowing in death I gave it one last effort to help others. It will be my final act in showing them that we can do good in life and in death.

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Aside from controlling what happens leading up to my death, I've given a lot of thought and put the wheels in motion for what will happen to me after I die.

Donating My Body After Cancer: My Final Gift to the Science that Saved Me

Because I look healthy and normal when I show up to school, no one would guess that I had cancer. I'm able to avoid the stares, assumptions, and unsolicited comments of concern from anyone I pass in the halls. Because my treatments have been relatively routine and I've been at this for years, our lives lack the unpredictable disruptions many patients can expect after diagnosis. This lack of disruption has led me to want to keep my dirty little cancer secret from teachers and school staff, and it's taken some conversations with other parents and professionals to realize it's not only alright to let this (cancer) cat out of the bag, it's important.

There have been years I have been extremely reluctant to tell teachers I have cancer, and wondered if that was in the best interest of my children. Not only did I want to avoid the stares or pity, I wanted my kids to avoid it, too. They are already experiencing a childhood so different from their classmates, why draw any more attention to it? Does the teacher wonder why I continually turned down opportunities to volunteer or go on field trips? How do I tell them that any free afternoon is going to be devoted to a nap to combat the fatigue that follows me everywhere, not helping out in their classroom? And putting myself in the middle of hundreds of potentially sick kids and germ-covered school surfaces when I'm neutropenic? I think I'll pass.

School administrators and teachers need to know a family is facing cancer so they can recognize when our kids might be off, struggling with emotions they don't want us to see, or need help they don't want to ask us for. My kids aren't coming home to fresh baked cookies and a well planned out family meal most days, as I can barely make it through the door after work before collapsing on the couch to summon the energy to prepare dinner. They need to know that what our children are seeing and experiencing at home is not normal, and our children may be dealing with emotions, lashing out, or struggling socially because they know their family is different. They go to school every day with a much heavier load than other students, and oftentimes the teachers and support staff are the ones to notice it and can offer help. There may also be those times when emergencies arise, disruption occurs, and we will need the support and grace of the school to keep our children's lives as normal and routine as possible.

Knowing also gives our teachers the opportunity to do what they do best - support our kids. My college roommate messaged me one day to ask a favor. A little boy in her class was being raised by a single mom who had cancer. I immediately empathized with the additional challenge she had in caring for him on her own while going through treatment. The class was participating in the 

, but the mom was too ill to help ship Stanley off on an adventure. She told the student about me, that I had two little boys just like him, and that I cancer like his mom. She asked if it would be OK to send his Flat Stanley to me, and let us take him on an adventure. He agreed. I know my college roommate has a heart of gold, so it doesn't surprise me she made the extra effort to help this student. But she took it one step further by connecting him with a mom just like his. A mom who would understand, a pair of boys who shared his experience, and a Flat Stanley that got extra special care from my family halfway across the country.

Most schools are equipped with professionals that have experience and training for a crisis like cancer, and can help our children navigate the war zone it creates. They can provide tools to families and teachers if needed, and keep tabs on our children, working closely with staff to make sure students can continue to thrive. I know I want to protect my children even more because I have cancer, but there are some things we can lean on our teachers and school staff for, and trust that they will try and do their best to help. This year I will send off the email well in advance of school starting, and trust that those who will watch over my boys this year will do so with the extra grace that we all may need.

To tell or not to tell? That is a question I ask myself at the start of every school year. Do I tell my children's teachers I have cancer?

Back to School: Talking to Teachers about Your Cancer

To call me a proactive patient might be an understatement.

I have now attempted to find a clinical trial twice in the midst of my treatment plan, and each time have walked away with something I'd do differently "the next time." Long before I knew I'd need to consider a clinical trial, I engaged myself in learning more about them. I wanted to be prepared when the time came and equipped with the knowledge I'd need to make the best decision for me (and my tumors).

I joined clinical trial groups, followed oncologists and researchers on Twitter that were invested in treating my cancer type, watched webinars, attended conferences and kept up with abstracts that came out of major oncology conferences.

I had my finger on the pulse of the research pipeline for my tumor type.

But even when the time came, I found things didn't go as smoothly as I had expected, and it wasn't as easy as taking my amassed spreadsheet of available trials and having my pick. It turned out even the proactive patient had much to learn.

The voices of patients are being elevated, and resources are being created to help patients understand and navigate many aspects of their cancer care. This includes understanding the often-misunderstood clinical trial. Patient advocacy groups as well as pharmaceutical companies know that one of the key ways to increase patient enrollment in clinical trials is by educating patients about them. When you make the unknown known with patient-friendly tools, you take the fear and apprehension out of the patient. Patients and caregivers should join clinical trial groups, watch videos on clinical trials and find webinars that explain clinical trials — many of which are taught in such a way that everyone can understand this scientific world.

During my previous year's quest for clinical trial, I missed out by days on the last spot of the very trial I was going to that cancer center to enroll in. Mere days! And part of the delay of game was the long wait to establish myself as a patient. This will be the most time-consuming process for anyone who anticipates looking outside of their current healthcare system for a trial. I found that most major cancer centers would not touch me as a patient or answer questions I had about their trials I qualified for without seeing me in person and giving me the once-over. And getting that appointment can take weeks or months.

If you are a metastatic patient who knows that clinical trials are in your future, and you believe you may need to look outside your current health care system to find them, establish yourself as a patient before you find yourself pressed for time and needing trial options sooner than later.

You are the captain of your own ship. The U.S.S. Clinical Trials can confidently set sail under your command and without your oncologist on board. Though it's always a plus to have them by your side as you navigate the often-stormy waters of clinical trials, you do not need them at the helm to change course, visit different ports or reach out to other cancer centers about possible trials. In fact, expect to do much of this work yourself.

4. Don't assume lists of clinical trials are up-to-date

Being the proactive patient that I am, I had spreadsheets with long lists of trials that I qualified for on paper. I would sit back and look at these organizational beauties and assume the hardest part would be deciding which one would be the best for me. As I was healthy and stable, I knew I had every right to be particular — like an episode of "The Bachelorette" with a room full of qualified men and I was holding the rose.

Websites that hold lists of clinical trials are populated by real people, and the rate at which trials open, close, and fill up cannot be maintained in real time. Though they are a great jumping-off point to see where there are trials, put more faith in an actual phone call to find out than by information you see on the screen in front of you.

, you should not consider clinical trials without first considering genomic testing. This is simply because of the amount of basket trials and targeted therapies available are increasing by the day.

A great example involves my own tumor type. Two-percent of us have a mutation for which there is a targeted therapy that not only has produced a complete response rate in some patients, but also has zero toxicity. That sounds dreamy, and it's too dreamy for me as I don't have this mutation. But what if your tumor was holding onto a secret like that and genomic testing could change the course of your treatment and therefore your life?

For some patients, you may have a champion in your oncologist who gladly teams up with you to find trials available. For others you may find that you are on your own, especially if you choose to look outside of the cancer center where you are treated. Turning your attention to clinical trials can be exhausting, but it's important to ask around and find the support and resources that are out there to help you tackle this next phase of your treatment.

Clinical trials can feel as if you are jumping off a cliff without knowing how far you'll have to fall before finally hitting the water. For many of us, we're already standing on the edge with nothing left to do but jump and hope that we'll eventually hear the splash. As a metastatic patient, what do I have to lose?

The search for a clinical trial would turn out to be my most daunting mission yet as a patient with cancer. Here are five important lessons I've learned throughout my search.

Lessons Learned in My Search for a Metastatic Cancer Clinical Trial

While walking me through what was to come after I received my diagnosis of colon cancer, my colorectal surgeon mentioned genetic testing. Still in a haze from the whirlwind that follows after you're told you have cancer, I barely remember his nurse giving my mouth the swab or why the results of that test would matter to me. The reason it was a priority to my surgeon was because I had a cancer not typically found in young adults, and my type of cancer was linked to several hereditary cancer syndromes that increased my chances of being diagnosed at such a young age.

Despite a family history of colon cancer, my oncologist let me know that I did not have any of the known inherited genes while also giving me my basic tumor genomics, or 

 specific to colorectal cancer, that would dictate the type of treatment I would be responsive to.

"This is good!" he said, mentioning that my tumor was 

 and KRAS-wild type. "It means you have more treatment options down the line." I couldn't even fathom what "down the line" would look like, as I couldn't even look down the hall to the very first infusion that awaited me after our appointment.

It is very confusing for a new patient to decipher pathology reports and the many acronyms that come with cancer. My oncologist knew better than to spend time at that first appointment trying to help me understand why my tumor genomics aligned with the genetic test results and why it would matter from this point forward. This understanding would come in time as I set out to understand my disease better.

I had both genetic and genomic testing after my diagnosis, and what I didn't know at the time was that information was vitally important when determining my disease surveillance and treatment plans. Simply put, genetic testing looks at what is contained in all our cells and could indicate a higher risk for developing additional cancers down the line, and genomic testing looks at what is contained in our tumor cells and how responsive or not responsive we could be to standard treatments available to us. Here's a 

 that can better illustrate it for those of us that don't have credentials after our name.

Though I knew my tumor basics from the original pathology, I knew more extensive genomic testing could reveal a mutation in my tumor that would make me a candidate for other drugs or additional clinical trials. If I wanted to improve my chances of successfully treating my disease, this was information I (and any oncologist supervising my care) would need to know.

When it came to genomic testing, it's like I got the basic car wash when I was diagnosed so I could see out the windshield and where I was going. Now I was getting the deluxe car wash so I could discover any scratches or door dings. The basic car wash will get you safely on the road and headed in the right direction, but the deluxe car wash will let you see even the most minor paint chip so the dealer can match the touch-up paint perfectly.

There is no better place to see the benefits of knowing your "deluxe car wash" tumor genomics than scrolling through a list of clinical trials. Research is now turning toward attacking not the tumor type, but mutations within the tumor. They refer to these as 

. To proceed into the world of clinical trials without knowing your tumor genomics is like going on a road trip with only half a map.

So who should consider more extensive genomic testing? As someone eyeball-deep in clinical trials and cancer advocacy, my gut reaction is anyone with metastatic disease — especially if you know clinical trials may be in your future. It will help you and your oncologist fine tune your treatment and trial options and may even open the door to some targeted therapies already available.

But it's not always that simple. Many insurance companies will not cover the cost of the testing for various reasons, but don't let a denial discourage you if you are interested in genomic testing. Genomic profiling companies like 

do offer financial assistance to patients who find themselves denied coverage for testing from their insurance provider, and as a patient you can appeal the denial. As patients, I know the last thing we want is to put our dukes up for yet another fight, but this is one I firmly believe can change the course of treatment for the better.

In the end I didn't have any rare mutations that would lead to any current treatments or trials. But as an oncologist friend added when I shared the news with him, the magic word to add to that is "yet." Research is evolving so quickly, and my mutations aren't new to the scene. There's a very good chance that something is in the pipeline that targets what I have, and it's just a matter of time before a trial opens.

Because I've opted to do genomic testing now, I know what makes my tumors unique, and as G.I. Joe once said, "Knowing is half the battle."

A quick scroll through the list of clinical trials made it clear I didn't know enough about my tumor and the mutations that made it unique.

Sarah DeBord

Donating My Body After Cancer: My Final Gift to the Science that Saved Me

Back to School: Talking to Teachers about Your Cancer

Lessons Learned in My Search for a Metastatic Cancer Clinical Trial

The Deluxe Car Wash of Genomic Testing

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