PSA: Happy 45th Birthday! You now are eligible to get a baseline colonoscopy screening.
Except for prevention-focused health nuts like me, that's not what anyone thinks when they turn 45. Being a BIGTIME advocate of early detection and screening for malignancy, directly from seeing its beneficial effects working in oncology, it is what I thought of. Yes, I know, not a normal thought, but as a Licensed Naturopathic Doctor, prevention is one of the baseline tenets of my profession and my lifestyle, and I have witnessed the powerful effect of prevention on long term health of my patients, family and friends. So I had my baseline screening in June, after some COVID-19 shutdown/rescheduling issues of course.
The prep is truly the hardest part in a normal colonoscopy when there are no bad results to follow. The news about something abnormal is far worse than the prep. However, it is better to get the news of any abnormality, precancerous or otherwise, early. Early stage cancer is easier to treat because it is usually small and has not spread anywere. More importantly, the incidence of colorectal cancer is on the rise in people under age 45. If you have any family history of or the warning signs ask your doctor at the very least to get screening done such as a FIT or ColoGuard Test, or just get the colonoscopy for more complete testing. As it turns out for me, this simple screening procedure saved my life.
My Gastroenterologist came to talk to me after I woke up from the procedure. Just by the way he was standing with his arms crossed, legs apart, in a defensive posture, I could tell there was bad news and that he was clearly upset. My PCP was even more upset when she found out: " NO! not you, you don't have any of the lifestyle or dietary risks that promotes cancer. This has to be a genetic cause." And she jumped into genetic screening and testing for me. However, cancer is an equal opportunity offender. I knew that from years working in oncology too. I did not think this was genetic or, even more unbelievably, lifestyle based, but cancer was indeed what was discovered.
Being wheeled out of the colonoscopy center to see the doctor talking to my husband and my 4 year old daughter, all of us wearing face masks because of the coronavirus pandemic, I was unable to take my eyes off my daughter while the doctor spoke with my husband. I was in a state of shock from the news, and still a tad dazed from the sedative. He was in tears, trying to keep it together while speaking to the doctor. A circle of questions and thoughts was on replay in my mind: Will I live to see her at 10 years of age? Will I get to witness her growth to becoming her own person? Is this somehow related to why I have had 3 miscarriages since she was born? Why now? My husband and I have a whole life to live together, our adventure has only just started! This moved me to tears for a while, and then slowly to galvanized resolve, to action.
Tough Days Ahead
As with any person getting news of cancer, my reaction was no different or special. Many thoughts came to mind during the first 24 hours, but with time I had collected myself and pushed forward as a stereotypical Type A, overly engaged patient. Tapping into my research forums and oncology knowledge of testing and treatment, getting thoughts for a plan together to recover from the colonoscopy and get moving on the next steps, whatever they may be. To borrow an overused cliche, you could say I leaned in to this HARD. I was worried about another pandemic shutting down our city, and a delay in my surgery, which I understood was to be my initial treatment if CT and MRI imaging was good. I did not know how long another shutdown would last if it happened. Trying to not panic and stay focused on the work ahead, I set some goals. I was determined to get out in front of this.
My Surgery Prep Goals:
build up my immune system for the metabolic stress and inflammation of surgery
gain weight in preparation for the temporary ileostomy and dietary changes to follow, which often results in malnutrition and weight loss from malabsorption
continue to exercise
don't stress out in general (of course this was the most challenging for a Type A patient)
add in the supplements like Modified Citrus Pectin, EGCG, Resveratrol, and Hesperidin Methyl Chalcone for the short time I could before surgery
In the three weeks time from my initial diagnosis at colonoscopy to the surgery day, I moved beyond the role of a Naturopathic oncology provider, mom, daughter, sister and wife to also becoming a person living with cancer, walking the same path that many of my patients had walked before me. I was familiar with it as a provider. It is not a path one should ever walk alone as a patient. Cancer sucks, and I was going to do what every one of my patients had done before me.
In both a physical (mainly by surgery) and an energetic sense, I was going to stand up to this, and not allow it in my life any further by physically stopping it any way possible from becoming even more a part of my life. I immediately shredded all the patient ID bracelets after each of my appointments. I did not even take the new patient packet from in the house; it stayed in the car and then went straight to the recycling bin after that. Everything I received by way of results and documentation did not get printed but stayed electronic and went into a generic file folder on my computer, titled rectal adenocarcinoma June 2020. I intentionally left my name off that folder title. I refused to let cancer become a part of my identity at this time in the process of getting ready for surgery and whatever other treatment may be needed. None of the details identifying cancer at this time were allowed in my home where I needed to live after and beyond this diagnosis. I was mentally and physically blocking it in addition to everything else I was working on.
CT, MRI, Bloodwork, Surgery Planning
Within 24 hours, my PCP and I ran the oncology test panels that I run with my existing patients, but this time on myself: circulating tumor cells, circulating tumor DNA, checking for BRAF and other mutations, in addition to baseline CBC and CMP, CEA and Ca 19-9 markers. I was contacted by schedulers for appointments, which were scattered out across time based on openings they had. I wanted the imaging appointments as close together as possible so I could get that information together for my oncologist. I had not even met the surgical oncologist yet, but I wanted to bring all these results to discuss at our first appointment in case there were any abnormals that influenced my treatment plan. I had scheduled CT imaging and bloodwork with MDAnderson on a Wednesday and met my surgical oncologist on a Thursday, an expert in his work and the surgery I would need, and who lead an amazing team. But I didn't relax and stop there - I kept calling the schedulers to move the MRI appointment and COVID-19 testing up when openings came, asking them to put me on their short list and cancellations list, and would drive wherever was needed to get the imaging or testing done so it would be done sooner.
My MRI experience was to be the most moving in all, no pun intended. It was probably because I had to be physically still for a little over an hour and I got a chance to really focus on this cancer and the outcome I wanted. During my MRI imaging they give earplugs and a set of headphones to listen to music while the MRI clanged and banged, getting the images needed to plan my surgery. I listened to that music and visualized the cancer margins disappearing, getting smaller and smaller. I saw my oncology team performing surgery with minimal blood loss and complexity, a surgical recovery with no fever, vomiting, or other complications like catching the coronavirus, for instance. I saw a surgical pathology report, printed out, with good news: There was no further treatment needed, and that all the cancer had been removed with clear margins. That report was on my fridge, held in place with a magnet. This was the only physical thing about my cancer that I would let into the house, which would indicate I had cancer and that it was no longer a part of my body. I saw my life ahead of me, with my husband and our daughter, our extended families and friends, living it for as long as we can, appreciating each day and each other.
Of course, I did not know for certain if my tumor was invading local or distal tissues until my first visit with my surgical oncologist. All my additional panels of oncology blood lab work came back normal. This was a huge relief. I continued to work on my own mindset and thoughts surrounding this diagnosis and my recovery. With this information in hand I also felt more comfortable breaking the bad news talking to family members, directing my brother and sister to get their colonoscopies done ASAP as we still thought this was genetic. My doctor and I met with my husband joining the appointment by Facetime, as no one else but patients were allowed in the building due to coronavirus. He discussed the treatment plan provided the MRI, just like the CT, also showed no evidence of distal spread or local invasion. If tumor board agreed, I was to have something called a Total Mesorectal Excision, with chemotherapy if lymph nodes or other local metastases were found. I had never had anything more than my wisdom teeth operated on and had never been admitted to a hospital before, but I was committed and willing to do this during a pandemic no less. The alternative of having no surgery - unthinkable. This was my path to walk with my surgical team and with all the support of my family and friends.
Building my Support Network
I contacted my community of support: Naturopathic and Medical colleagues and asked them for support. I found people in my field who I could work with to further improve my chances of long term survival, while also reducing any risk of recurrence. I built a few teams of support - medical team, friendship team, family team, and I found a group of colorectal cancer survivors through the organization Fight Colorectal Cancer.org
I felt ready for the next steps. I completed my coronavirus test on Friday after the MRI, and then waited. I received the call on Friday night: tumor board agreed with the proposed plan of action and I was to check in for surgery the following Monday at 5:15am. I understood I was to have an ileostomy for a few months to allow healing. I watched some YouTube videos on ileostomy bags as I mentally prepared for this new but temporary normal. I ordered ostomy supply samples and started the surgery preparation and recovery protocol that I also make for each of my patients according to what they need.