Today’s guest blogger is Ariel M. from Salt Lake City, Utah.
If it’s a race, it’s a competition.
If it’s a competition, there is a winner.
If I am racing, I’m competing, and if I’m competing, I’m already winning.
Crowded behind the start we timidly size each other up as we choose the perfect place in line. I’m encouraged by passing people along the way, but I certainly don’t want to get stuck behind a group of walkers using this time as their social hour. So I choose somewhere in the middle. The gun goes off and there is an awkward mix of music with the speakers blasting “The Distance” by Cake and my headphones in one ear blasting “WAP” by Cardi B. Both songs are soon drowned out by the rushing river which we follow through the first 4 miles down the canyon. I feel easy and light on my feet in the beginning but quickly realize it’s because we are going straight downhill. Downhill proves to be a harder impact on my osteopenic knees than the uphill so I lean forward and befriend the help of gravity. Legs circle and tumble one in front of the other, landing on the pads of my sockless feet. My hands flop at the wrists as I relax my arms and let them swing openly. The cold morning air instantly wicks any sweat that beads out of my armpits.
We pass a huge rushing waterfall that flows from about 50 meters up. I take note of its beauty and power while a woman stops to take a picture. I think about what a unique photo opp this is since the road is closed off for the race and I could snap a shot front and center from the middle of the highway. But I don’t stop. Because I’m racing. Still, I appreciate the gentle mist that radiates, touching my face. My mind focuses back to the rushing river and the sound of 10 feet from the little grouping of runners around me. I see the first water station ahead. I strategically situate myself to grab one of the cups, throw a splash in my mouth and dunk the cup into a trash can all without missing a step in my stride. This maneuver allows me to pull ahead of my little grouping and now I’m alone.
I notice a new bunch of runners ahead of me and I wonder how a 10-year-old child and a hobbling older lady have been in front of me this whole time. I analyze their strides and think about how I must look compared to them. Then I remember that the 5k started ahead of us. This makes sense now. I slowly start to pick people off. One at a time, I chase them down building up my fortitude as I do.
This whole experience is a great challenge for the ego– The mediation between the conscious thoughts about how I seem to the outside world and who I really am on the inside. The ego reminds me that I can be many things at once. Competitive and friendly. Aggressive and encouraging. Ecstatically joyful and deeply depressed. All of which I am feeling now as my attention fades from my mental state to my physical one. My philosophical musings get broken up by the lactic acid pulsing around my hips and dull aching in my knees and ankles.
My headphones now play “Higher Love” by Whitney Huston with some sort of techno remix. I tear up and think how I wish someone I knew would be there at the finish line to hold me. Lyrics become like a little prayer:
Bring me a higher love.
Bring me a higher love.
I choke back tears and then think about how I probably just need to eat. I put my emotions in check and my mind turns psychedelic. My breath, while labored, is my consistent anchor, reminding me of the potency of the present moment I find myself in. Regardless of my attempt to feel some enjoyment out of this, my legs are definitely hurting. But I can’t blame anyone else for my suffering because I signed up for this. And for the first time in a while, I feel empowered by my own self-inflicted pain. It makes me feel in control. It makes me feel powerful. I get to do this. I get to run fast down a canyon with strangers shouting their encouragement and ringing cowbells. A smile goes a long, long way in these spaces. A good job or a thumbs up can be all someone needs to remember that they are still among the living and perhaps supposed to be having a little fun. We all cross the finish line by the end of the day so it’s better with a happy face.
An African dance song has me feeling positive with about 5k left to go. After we exit the bottom of the canyon, we take a paved trail through the city that winds towards downtown. The last turn takes us onto a straight path to the finish line. I can see the large banner up ahead, a deceptive 6-8 blocks yet. Not time to sprint, but one can only run faster when the finish line is visible.
These longer races have me thinking that sometimes it’s not about who is fastest or strongest,but it’s about who can withstand the most suffering for the longest period of time. It’s not just my legs that ache now, but my lungs and heart are also struggling to make sense of this intensity. I remind myself that I am good at suffering. Really good, in fact. I have some advantages in that department.
I speed up with every block and I wonder what song will play last when I cross the finish line.
I pass a kid with a Huntsman Cancer Center jersey and I shout “HUNTSMAN! WOOP!” We high five and his dad asks him who that was. He says he doesn’t know. I shout back “I’M A PATIENT! STAGE 4 BABY!” I find it interesting that when I pass people and give them a verse of positivity, it actually makes me run faster. Instant proof that the more we give, the more we receive. We become inspired by sharing our inspirations.
I’m throbbing with encouragement and all in the 30 seconds before I cross the finish line I think:
I have had 25 rounds of chemo.
I have had level 10 pain on the way to the ER, multiple times.
I’ve had my abdominal wall sliced open multiple times.
I have lost my ability to ever carry my own children again.
I lost the ability to feed my child on my own terms.
I know what it feels like to lose control of life because of an outside force.
I look death in the eyes on a daily basis and here I am, running all this way, and pretty damn fast!
The last song comes on, “Dog Days Are Over” by Florence and the Machine.
“Run fast for your mother, run fast for your father
Run for your children, for your sisters and brothers
Leave all your love and your longing behind
You can’t carry it with you if you want to survive.”
I cross the finish line stronger than when I started though now with sore baby deer legs. In my blurry vision, I see families with signs and children hugging their sweaty parents. I hurt. I hurt so good. I feel weepy and happy and nearly hallucinative. I’ll always be drawn back to this feeling and curious about how to recreate it. How to share it. Standing at the finish line on a beautiful sunny day, alone in a crowd of people, I remind myself that I’ve already won…although 4th in my age group isn’t bad for a stage 4 cancer survivor!
COVID brought us closer together in 2022. We’re proud to share our impact numbers for 2022:
- Physician Presentations on educational topics: 9 doctors
- HOPE Zoom: 95 online meetings hosted
- HOPE Zoom: 2600+ attendees
- Special Events:
– Caregiver HOPE Zoom Panel: 1
– Cutting-edge Treatment Presentations: 2
- Recognition: Chris Piekarski received 2022 Gabriella Graham Patient Advocacy Award from the Society of Surgical Oncology (SSO)
- Mentor Relationships: 4500+ 1-on-1 connections made
- Get Well+More Cards: 85 Pals getting mail
- Get Well+More Cards: 1200+ cards written by fellow Pals
- Bare Bottom Bears: 35 delivered
- MeetUp 2022: 70 Pals brought together
In December 2021, 6 months shy of my 40th birthday (and right after completing my 4th TCS NYC Marathon), I heard the three words that nobody ever expects to hear: “You have cancer.”
While in surgery to remove a large, complex ovarian cyst, they discovered a tumor in my appendix and what they thought might be mucin in my abdomen. My appendix, right ovary, and right fallopian tube were removed. Biopsies confirmed the tumor was a rare, stage IV appendix cancer called Low-Grade Appendiceal Mucinous Neoplasm (LAMN).
In March 2022, I underwent cytoreductive surgery (CRS) and a treatment called HIPEC – Hyperthermic Intraperitoneal Chemotherapy – while in surgery, after CRS, they bathed my abdominal cavity with a highly concentrated, heated chemotherapy (42 degrees C/108 degrees F) for 90 minutes. The goal of CRS is to remove all visible tumors; the goal of HIPEC is to remove any tumors remaining on a cellular level. I was in the hospital for a week and left with 52 staples along my abdomen.
Based on my 3-month scan, I showed no evidence of disease (NED), however, there is always a chance of recurrence (especially with LAMN, which is very slow moving) My doctors – Dr. Jeannine Villella DO and surgical oncologist Dr. Marcovalerio Melis MD, both at Lenox Hill in New York – will monitor me with CT scans and bloodwork every 6 months, eventually reducing the frequency for up to 10 years.
The crucial part of my diagnosis was finding the ovarian cyst. I complained for years that my periods were painful and heavy. I noticed they were getting worse and something in my body simply felt “off.” Doctors continued to suggest oral birth control, IUDs, etc., as a bandaid for this pain. I pushed back, requesting an ultrasound to get to the bottom of it, as I thought it was endometriosis. Moral of the story: listen to your body and advocate for yourself. You know your body best.
Appendix cancer is rare; its companion Pseudomyoxa Peritonei (PMP) occurs when the disease spreads beyond the appendix. Only two people in every one million are diagnosed in the United States annually. Most diagnoses are found at stage IV because it has moved from one organ (the appendix) into another. This is particularly true of LAMN, where peritoneal metastases become more evident. There are not many clear, early symptoms of appendix cancer, aside from maybe acute appendicitis, ovarian cysts, or complicated bowel issues. There are no interventional screenings currently available in its early stages, like a colonoscopy or mammogram to screen for colon or breast cancer. While there has been a lot of progress made recently for treatment and hope for the future, discovering LAMN is sometimes just dumb luck. If diagnosed with appendix cancer or PMP, it is extremely important to see an appendix cancer specialist (pmppals.net has an up-to-date, global, interactive map of specialists).
Three months after having CRS/HIPEC, I celebrated my 40th birthday! I cannot wait to get back onto the Peloton bike and sign up for my 18th half marathon. My diagnosis is a huge part of my life but does not define me: I am a native New Yorker living on the Upper West Side with my rescue (foster-fail) dog, Charlie. I live for live music and spending time with friends and family. I love to travel and eat my way through new cities! Don’t make me choose between summer and winter – I equally enjoy being on the water and up in the mountains (I don’t ski, but boy the mountains are beautiful, especially with fall foliage!)
I currently work from home full-time in marketing and branding, specifically in new real estate development.. You probably know many projects I’ve worked on if you know the Manhattan skyline, such as One World Trade and Central Park Tower. I always keep an eye out for new challenges and rewarding work. Hence, as an active advocate/fundraiser for cancer research, I currently volunteer with PMP Pals and recently coordinated our first-ever cookbook. (Click here for the digital copy.)
While no one wants to hear, “you have cancer,” my Silver Linings of appendix cancer/PMP are numerous. First, becoming a part of the PMP Pals family has been helpful in my outlook and approach to living with this diagnosis. Second, I am learning to love and appreciate my body because no matter what it looks like on the outside, it is strong enough to endure HIPEC/CRS (it is hard to believe I survived such an invasive surgery). I have a renewed appreciation for my friends and family who really stepped up for me after my diagnosis. At my age, to have both parents by my side during all of this is something I will never take for granted. Family is extremely important to me, as is my faith in Judaism and the traditions we share around the holidays. I even hosted Passover this year, only 1-month post-op!
What’s next? Doctors can’t commit to anything concrete besides being on “watch and wait” with my scans (and monitoring my chemo-induced menopause symptoms), which isn’t easy! However, thanks to PMP Pals, fellow patients and caregivers continue to give me hope, a better understanding of my diagnosis, and an idea of what to expect moving forward.
My interaction with PMP Pals has helped to validate all of my feelings, physical and emotional, and placed me on a positive path to living my best day. I’d be lost without them! PMP Pals gave me the support I didn’t realize I needed after my diagnosis. They answered questions I didn’t know I had and prepared me for everything going into/coming out of surgery. During the weekly meetings, we discuss topics that my friends and family don’t understand – even friends who have had cancer. It’s different speaking with other ACPMP patients. I’ve made new, genuine friends, which is hard to do at my age! Our relationships may have started because of this rare disease, but these have grown into sincere friendships. I look forward to our calls, especially now, being able to help others – both new and returning members– by sharing my experience and volunteering. It feels good to pay it forward!
If you are new to this journey, I offer these tips:
Find a specialist. Not all doctors are equally educated on appendix cancer. And, meet with as many specialists you need to in order to feel confident with your team and treatment plan.
Keep coming back to PMP Pals meetings. Ask questions -I guarantee that someone has already asked your question before so please, don’t be shy.
If you fall under the AYA category (adolescents and young adults with cancer) – I recommend https://anchor.fm/canceroutloud/episodes/Its-a-Marathon-Not-a-Sprint-e1qui5v/a-a8ss3doalso joining an AYA support group, in addition to PMP Pals, to cover different topics (navigating dating, fertility, etc).
Remember: Healing is not linear (exact words from PMP Pal, Linda, while I was in the hospital). Give it time.
Lindsay recently shared your story and her experience on CancerCare’s podcast “Cancer OutLoud.” You can listen here as she talks about accessing CancerCare’s resources including a licensed oncology social worker.