What matters most? Memory itself? Or the love that feeds and frames it? Love lasts longer, so perhaps love wins. Love inspires. Love nurtures. Love can be rekindled and love knows many ways of being. It can be captured in a kiss or a fleeting look. It can be made immortal in a photograph. Love lives with the present moment and the past. Love has a future and we can't forget that. “ Call the Midwife

As many of you know, the type of cancer I was diagnosed with is one where the words “remission” and “cured” are not typically used. The best we can get is “no evidence of disease” (NED) for short.

In looking backward at life, some days will forever be remembered because of the potency of an event: a birth,  a diagnosis, a death. Other days, however, we find ourselves in a completely new and transformed place, and the specific date in which that transformation occurred is obscure. That is how it is for me and being NED. When people ask how long I have been NED for, it’s nearly impossible to put a specific date on it. My first negative biopsy was in January of 2022 however I continued on chemotherapy because of (what was thought to be) the presence of visible cancer. By October of that same year, I had received another 12 or so biopsies which all came back negative. While I didn’t receive any more (western medicine) treatment after October of 2022, I was still in and out of the hospital with complications for some time. Long story short, I’m claiming it. I’m NED. In celebration of this (somewhat ambiguous event), I have created a timeline from before my diagnosis until today. I hope this will bring light and hope to those who are walking a similar path.

August 2020- September 2020 (Flagstaff, AZ) - It’s the heart of the pandemic and I have a stomach flu that I never recover from which brings me to the ER 6 times in 2 weeks for level 10 abdominal pain. It was epigastric pain that was sharp and right in the upper central part of my abdomen between my ribs. This was completely unlike me as I had never been to the ER for anything and was RARELY sick with anything more than a brief head cold. I lost a ton of weight, had my gallbladder removed, and had to quit my prenursing classes due to the inability to attend. Bodhi was 6 months at the time and strictly breastfed. I nearly lost my milk supply and had to get breastmilk donations to supplement while I was on pain meds and in and out of the hospital (thank you to every lactating mother in Flagstaff at that time). When the surgeon was removing my gallbladder during this time, he took a look at my appendix and noted that it looked “thickened” but overall seemed normal, so he did not remove it at that time…

9 months later….

SYMPTOMS

June 2021 (Flagstaff, AZ) - My milk supply came back and I regained my normal weight, returned to eating my usual diet again, digesting fat properly, and working out like usual. I reenroll in my prenursing classes and have 1 more semester before I can start applying to nursing programs. I begin having a sharp pain with gas and bowel movements. About 10 seconds before I would poop or fart then the pain would go away completely. It would go from a level 9 pain back to zero in just a few seconds. I thought it could be period-related, you know, normal bloating stuff with my menstrual cycle. So I waited through a full monthly cycle and when the pain persisted, I brought it up at a regular OB appointment.

July 9th 2021 (Flagstaff, AZ) - I went to the OB appointment and the doctor said it felt thickened in my abdomen so we should get an ultrasound just to make sure it’s nothing.

July 11th 2021 (Sedona, AZ) - I celebrate my 30th birthday with friends. I joke that maybe I shouldn’t drink alcohol just in case it’s cancer, I wouldn’t want to make it worse. My dear friend Chelsea lovingly berates me and assures me it’s not cancer. I enjoy a glass of wine with dinner. Bodhi is almost 17 months old. Still breastfeeding.

July 13th 2021 (Flagstaff, AZ) - The ultrasound. The ultrasound tech first explains to me all of the possibilities of different masses we might find, many and most of which are benign and don’t need to be removed. After the brief transvaginal ultrasound, she immediately asks me when I follow up with my OB (not what you want to hear). I told her that my follow-up wasn’t for a few days and she said she would call my doctor to have her chat with me sooner (again, not what you want to hear). I asked her if she thought that this was a mass that would likely need to be removed. She said she is not qualified to tell me for certain but she assumed it was a mass that looked concerning.

Later that afternoon, my doctor calls me to tell me that she has referred me to Arizona Oncology STAT where I would meet with a specialist OBGYN oncology surgeon because she is suspicious that I have ovarian cancer. My mom tells my dad this information while he is away at a forest fire and he drops what he is doing and drives home immediately. He rushes into the house and asks us what the plan is and what we are doing. My mom responds with, “I don’t know. Crying?” My mom assures me that we will take one piece of information at a time and continue to move forward. That is all we can do is take it as it comes.

Per the surgeon’s request, I get a CT scan as well as some cancer blood markers drawn so she will have more detailed information by the time I meet with her in a couple of days.

July 15th 2021 (Phoenix, AZ) - I meet with the oncologist surgeon in a small clinic office where she is explaining to me all of the various things that this mass could be besides cancer. She says that she would like to wait until my bloodwork comes back before making any big decisions. What seems like moments later, her phone buzzes with my blood work. My CEA and CA 125 (cancer markers) are extremely elevated. Normal is in the single digits and mine was in the 1500’s. She says, “Change of plans. Here is what we are going to do: You will go in through the ER at Chandler Regional Medical Center because I have surgical rights there. You will tell them you are having extreme abdominal pain in order to get admitted.” My mom immediately understands the mission and assures the doctor that she knows what to say to get me admitted. The doctor goes on to say that she will recommend to the ER that I get a colonoscopy and endoscopy done to make sure that the tumors are not coming from inside of my colon (in which case I would need to be referred to a GI surgeon instead). Once we get the all-clear on that, we will aim to go in for surgery to remove the mass, biopsy everything, and have a look at what’s going on in there. 

My mom and I walk out of the clinic and I remember my mom saying, “We are not going to panic! We won’t panic!” (Both of us slightly panicking). 

Meanwhile, my dad and Bodhi are about to head down to Tucson for my maternal grandfather's celebration of life which is in two days. I remain hopeful that regardless of what happens, Mom and I will be able to make it down there for her own father's funeral. We say goodbye to them before Mom and I head to the ER. This is the last time I actually breastfeed Bodhi with my own body. I was stood outside in the warm desert sun and had an inkling that it could be our last time together like that. :(

Mom and I go to the hospital and I get admitted and things move forward as instructed.

July 16th 2021 (Chandler Regional Medical Center, AZ) - My endoscopy and colonoscopy come back clear and I am prepped for surgery the following day with the OBGYN specialist oncologist. She says that she will have a GI oncology surgeon on standby during my surgery in case any complications involve my intestines or other abdominal organs.

July 17th 2021 (Phoenix, AZ) - Surgery day. My entire family is gathered in Tucson to celebrate and remember the life of my Grandpa, John. We feel like we are there even though we are not.

Before I go in for surgery, I write down on a piece of scrap paper what I wish for Bodhi in case I die during the procedure. I pray with my dad and Bodhi on the phone. My nurses have me fill out a consent form that says that the surgeon ought to take out whatever organs she deems necessary to give me the best shot at a decent quality of life.

A few hours later, I wake up to my mom sitting on my bed, holding my head, stroking my hair, and weeping. I ask her what they took and she says “Everything.”

The anesthesia wears off a bit more but I am still foggy. The surgeon comes in and stands strangely far away from my bed. Without making direct eye contact, she says, “We know it’s cancer, right?” My mom and I both nod, but that was definitely the first time anyone told me that information directly.

I am diagnosed with stage-4, high-grade, mucinous adenocarcinoma of the appendix with signet ring features and moderately to poorly differentiated cells. (Aggressive appendix cancer). 

This surgery resulted in a full radical hysterectomy as well as the removal of some of my omentum and peritoneal lining, as well as my appendix.

August 2021 (Flagstaff, AZ) - I get my chemo port placed in my chest and begin chemotherapy, FOLFOX with Avastin. The first round was one of the worst - with extreme nausea, fatigue, first-bite pain, neuropathy, and cramping in my hands. The plan was to do about 12 rounds of this chemotherapy before doing an exploratory laparoscopic surgery to see how well the chemo worked. The goal was to knock down the tumors enough so that I would be a candidate for the HIPEC procedure. Nicknamed ‘MOAS’ (Mother Of All Surgeries) - This procedure involves a major debulking of the tumors and a hot chemo washout straight into the abdominal cavity. 

I get connected with PMP Pals, an organization that offers community support to Appendix Cancer patients and caregivers. I begin to meet others from around the world with the same disease, many whom are the same age and with an identical pathology as myself. I begin attending weekly Zoom meetings where I get to know this community.

I begin eating vegan and low/ no sugar.

September - December 2021 (Flagstaff, AZ) - My parents, who both happened to recently semi-retire, take the role as my medical advocates. In learning how rare this disease is, it becomes clear that I need to be close to specialist care. We interview 4 different specialists in surrounding areas: Dr. Baumgartner with UC San Diego, Dr. Lambert with the Huntsman in SLC, Dr. Raoof with the City of Hope in LA, and a doctor in Omaha NE. Overall, each of the doctors has the same consensus. Since she was a woman, and Salt Lake City felt like the most comfortable ‘vibe’ for our family, I went with Dr. Lambert. She is also one of the most respected appendix cancer specialists in the country and contributes to forward-thinking research on this disease. She specializes in palliative care which means she is not only focused on surgery but on quality of life overall.

In my meeting with Dr. Raoof in LA, he discusses the potential of the PIPAC clinical trial should it turn out that I wasn’t going to be a candidate for HIPEC and said we would cross that bridge when we get to it.

I stop eating vegan and instead eat mostly plant-based. I attempt an array of natural medicine protocols including the Joe Tippins protocol, hyperbaric chamber, high-dose vitamin C injections once a week, RSO oil, essiac tea, coffee enemas (these were great after chemo days BTW), and a slew of natural medicine supplements from a local naturopathic oncologist (Dr. Rubin).

January 2022 (Salt Lake City, UT) - My cancer markers had returned to normal and my scans were clear of any major disease progression. We rent a house in Ogden, UT for a month or two while I have my laparoscopic surgery and continue to receive chemotherapy through the Huntsman. Dr. Lambert performs my exploratory laparoscopy and tells me that the disease burden is much too high to perform a successful HIPEC surgery. She tells me there is visible disease on my small and large intestines, liver, bladder, diaphragm, and peritoneal lining. She takes a biopsy and it comes back negative for cancer. She says that it doesn’t mean much because sometimes only 1 biopsy is not indicative of active living cancer tissue which might be present elsewhere.

She refers me to Dr. Raoof and says that I should look at getting into the PIPAC clinical trial. PIPAC is a laparoscopic surgery where they insert ports into the abdominal cavity and infuse it with aerosolized chemotherapy at a high pressure, like a paint gun. It’s supposed to penetrate the cancer cells directly. This is done alongside IV chemotherapy which I continue to receive every other week. I switch from FOLFOX to FOLFIRI chemotherapy to avoid permanent neuropathic damage in my hands and feet.

February 2022 (Layton, UT) - My parents and I begin a 6-month-long insurance battle to get me approved for (what we believed) was my only next option for treatment. We decide that no matter what happens, it will likely be best for me to live near my specialist care, meaning moving near SLC. We begin looking at houses in surrounding areas and start the process of moving out of Flagstaff AZ, the place we called home for 21 years.

April 2022 (Portland, OR) - One of my best friends asks me if I would be interested in connecting with one of her teachers in the acupuncture program she is studying for at one of the top naturopathic schools in the country. I fly out to meet Dr. Fruhauf with the Healing Order and get started with a natural holistic Chinese medical protocol of herbs, supplements, and dietary changes specific to my exact biology. I stop doing high-dose vitamin C injections, stop all other supplements, and begin the Chinese medicine protocol. Dr. F assures me that I am healthy and that my body wants to heal. The medicine he gives me will help me to tolerate the chemotherapy as well as address the root cause of why my cancer grew in the first place (something that Western medicine does not address). I continue traveling to Portland every 4-5 months to get retested and re-up on my medicine.

Summer 2022 (Ogden, UT) - We buy a house in Ogden, UT. LONG STORY short, we end up getting a local news channel involved in our insurance battle. We win our case in front of a judge and I am approved to take part in the PIPAC trial.

I stop taking anti-anxiety/ nausea meds to take part in a psilocybin clinical trial for patients with a late-stage cancer diagnosis. I contribute to the study of how this medicine can be implemented in a medical environment for folks with terminal diseases or PTSD. After the trial, I begin cycles of microdosing on and off for a month or so at a time. I no longer take pharmaceutical anti-anxiety medicine.

July, 2022 (Ogden, UT) - I turn 31 years old. I celebrate surviving one year after being diagnosed. I also begin taking hormones for the first time after learning how dangerous it is to be thrust into surgical menopause at 30 years old. A bone scan shows that I was already having significant bone loss, making me osteopenic. I’m still on chemo every other week.

September 2022 (Los Angeles, CA) - We rent a house in LA for a couple of weeks while I have the first round of PIPAC. It was painful, but I survived. I have post-surgical pain and have a terrible time getting comfortable which makes sleep extremely difficult (on top of the million other reasons why sleeping is difficult). Dr. Raoof takes 4 biopsies from the 4 different abdominal quadrants. They all come back negative for cancer. My cancer markers continue to be in normal ranges and my scans are relatively clear with no new growth.

October 2022 (San Diego, CA) - I attend my first PMP pals conference and meet so many of my appendix cancer ‘family’ that I had only previously met on Zoom. Dr. Raoof is one of the speakers at the conference and he gives a presentation on PIPAC. I ride the elevator with him and consider the fact that he has seen the inside of my body in a way no one ever has. Weird. But cool. He is a nice guy and wicked smart.

Later in October 2022 (Los Angeles, CA) - Dr. Raoof agrees that if he takes a handful of biopsies during the second PIPAC and they all come back negative, then we ought to consider not doing a third round (since it would appear that there is not sufficient evidence for living disease). I have my second round of PIPAC. It’s more painful this time. I make it back on a flight to Ogden with the help of my mom and a wheelchair but after a few days home, I am having level 10 pain that my medicine won’t touch. I go to the Huntsman emergency room where I get admitted to the hospital for a few days. I begin having uncontrollable liquid diarrhea and losing some weight. Concerned about a bowel obstruction, they give me an NG tube which goes in the nose and down the throat to pull stomach acid out and give my intestines a break. I get discharged only to get readmitted a few days later with the same problem. This time they put in a PICC line to give me IV nutrition since I can’t keep any food down and I am beginning to lose too much weight. I am in the hospital for about a week.

November - December 2022 (Ogden, UT)  - I remain on TPN and am bummed out that I can’t eat much, especially through Thanksgiving and Christmas, but all in all, I’m happy to be home and not in the hospital. My mom helps me hook up to TPN every night (and Grammy too!). I sleep with a beeping machine and cords wrapped all over. I eat a low-inflammatory diet with lots of liquids and focus on chewing my food more. I eventually move to TPN every other day then even longer. I begin walking more and moving my body a bit more every day, even taking a  yoga class here and there. 

Christmas 2022 - I am able to maintain my nutrition on my own so I get off TPN and I get my PICC line taken out. I continue to get a blood test and a CT scan every month. I am still taking my Chinese medicine protocol and meeting with Dr. F every few months. Dr. F says that it is clear that my body is now starting to address the root causes of the cancer instead of being in survival mode from withstanding poisonous chemo treatments. 

August 2023 (8 months later) - I compete in an X-Terra offroad triathlon and win 2nd place in my age group. I lift weights 3-5 times per week, take a yoga class 1-3 times per week, and ride my e-bike around all summer with Bodhi on the back. I begin personal training a few clients and teaching a few yoga classes. I have a renewed sense of purpose and passion in the fitness world.

October 2023 - I attend my second PMP pals conference and this time I am participating as an athlete ambassador and teaching a meditation class at the conference. I continue to connect with others who are recently diagnosed. Many people I meet in this group continue to have complications and many of them have died.

The remainder of 2023 - I compete in 2 more triathlons, and in one of them I win the #1 overall female. I love the routine of a consistent movement practice. My time at the gym, on a bike, or in the mountains, keeps my cup full and overflowing. I don’t take my health for granted and I have no desire to return to “normal”, which is where cancer grew from in the first place. Whatever ‘normal’ was, wasn’t working. I wake up every day and ask how I can be of service. I ask where my message is meant to be received and I pray to be welcomed into spaces where my offerings will benefit as many people as possible. I still struggle to eliminate distractions that take me away from gratitude and connection to the present moment but I have made a lifelong commitment to return to that space no matter what.

All in all, I feel like the luckiest person in the world. Thanks for reading.

Big love,

Ariel