Stage 4 is Not My Finish Line
This year, on December 18, 2023, I will be celebrating my 20th wedding anniversary. I will also be marking the anniversary of my first cancer surgery on the same day, in 2019.
It was just before Christmas, parts of the hospital were shut down and I was in a room with 3 other people, at times there were as many as 6. It was hard for me to keep track as I had my curtains drawn the entire time, but I heard them, and many of them were very ill and in constant pain.
I found this surgery to be the most difficult of the three I have had so far, even though it was the shortest. I had never been in the hospital before and I was very overwhelmed, I had not yet found my PMP Pals. I had found my way into the world of stage 4 cancer (and surgical menopause), little did I know it was just training for what was yet to come.
Physically I recovered well, I had been running to prepare for surgery beforehand, and when I couldn’t run anymore, due to the size of my stomach (they removed two football-sized tumors on my ovaries during surgery!), I had switched to walking on a treadmill at home.
The Butter Tart Run
The last race I remember doing before my cancer diagnosis was the Butter Tart Run 5K with my husband and a friend. I didn’t realize at the time I was already “with cancer”, which was the reason it was so hard for me to run, but we did it, and it was fun (and delicious!). I have attempted to run on and off since then. Back then I felt like whenever I started to gain some traction with my exercise a new obstacle would be in my way (hello hernia), thankfully I was able to remind myself how important movement was to me and how it helped me recover from my first surgery. I decided if I couldn’t run I could still walk and so I did, and continue to do so whenever I have the opportunity.
This strategy helped me as I had my first operation in May 2020, and then a second in August 2022. Both were Cytoreductive (CRS) with Hyperthermic intraperitoneal chemotherapy (HIPEC) surgeries. When I was in the hospital I was dedicated to doing laps around the hospital floor. During the second surgery, because of an outbreak of COVID, I did laps in my room pacing back and forth every hour that I was awake and physically able. When I was too tired I still moved, sometimes stretching my legs and arms on the bed, or if I was able, I would sit on the edge of the bed or move to a chair. I thought of this exercise as my personal training plan for the life I still had ahead of me.
I remember when I started chemo (March 2022) after my recurrence, it was really hard to keep moving. I didn’t move much some days but I tried. When I was able, I walked outside to get fresh air, sometimes I would just sit near the window. I always felt better when I moved, especially when I got fresh air but didn’t always remember that when I was sitting on the couch during treatments. Folfox was hard, it definitely made me cold so I had to wear gloves and dress in layers, I usually only felt sick for one or two days each treatment (I did 6 in total). My hair also got very thin so I eventually cut it short and wore a hat often as I was pretty self-conscious. The mental side of feeling and looking weak was very challenging. I had lost a lot of weight and muscle which I knew was contributing to my fatigue and the general sense of “Blah”.
Fast forward to 2023.
I feel even better than I did when I was first diagnosed in 2019 (no that doesn’t mean every day is rainbows and unicorns) and yes I still have cancer.
I have slowly shifted my way of thinking and now refer to my cancer as a chronic illness that can be managed.
How do I do this? I am resourceful as there is no instruction manual. I educate myself, asking questions and finding help from experts when necessary. I also continuously remind myself that my body will change as does everything in life.
I try to identify what feels “out of balance” with my mind and body. This is continuous and challenging, but I believe finding more balance will help me be stronger and more resilient.
I focus on my nutrition, eating well to give my body what it needs which takes lots of trial and error (nutrient-dense food to stabilize my weight and help my body get stronger). Sleep is a priority, allowing time for my mind and body to heal (there are lots of books and videos about why sleep is important).
Reducing my anxiety is a big one for me! I’ve incorporated meditation and breathing exercises as well as finding a good therapist and learning to express my feelings better (work in progress!)
Movement is a secondary priority every day. Walking (a lot!) — gentle yoga, pilates, or even stretching. Recently, I’ve started adding running and bodyweight strength training back into the routine again.
Last, but definitely not least, connecting with others (so grateful for each of my Pals). The piece I was missing when I began this journey. Everyone needs a support crew, especially when stage 4 is not your finish line.
Love your Pal,
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!
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.
Celebrating 25 Years of Survivorship
On October 29, 2022, I reached my 25th year of survivorship, measured from the surgery that diagnosed my appendix cancer/PMP. What a journey. As with many anniversaries, this date is a time for reflection. I’d like to share my story and what these years have taught me.
My Story. In 1997 at age 41, I noticed some changes in my body. Most importantly, my belly was growing rounder, causing me to double my workout efforts. But when my husband commented on how firm my belly felt after just a short time with more workouts, a light bulb went off: “This is not normal.” At my annual exam a month later, my gynecologist agreed something was wrong and sent me for a sonogram. The technician’s reaction sent a signal that something was alarming. Surgery was quickly scheduled for October 29 due to a large mass the sonogram showed on my right ovary. That tumor was removed, all 4 pounds and 6 inches in diameter, along with my abnormally shortened appendix and more tissue and mucin. With this surgery, I was introduced to the world of PMP/appendix cancer.
My local surgeon had encountered appendix cancer/PMP a few times before. He felt that he could control my “slow-growing” and “relatively benign” disease with periodic debulking surgeries. I needed surgery again in 1998, then a diagnostic laparoscopy with biopsies in 2000, and then another debulking in 2006. From 1997 to 2008, I relied on local treatment and advice. I made some forays on the internet for information, but did not find resources that were helpful to me. In 2008, due to massive spread of disease, I was told I might want to think about cytoreduction surgery (CRS) and HIPEC by a specialist. At this point, I again searched for web-based information, and I established contact with PMP Pals.
So, I rather confidently sent my records to an in-state, in-network major cancer center with an appendix cancer specialist. When my request for an appointment went unanswered for weeks, I called to find out why. The surgeon’s staff shocked me by saying that he felt I was “too far gone” — he would not perform surgery, and he felt my condition would soon decline.
What? How could I reconcile my local surgeon’s rather lukewarm assessment of the need for HIPEC/CRS with the specialist’s words indicating that the HIPEC ship had already sailed — I had missed it? Not only was I confused and angry, but for the first time since my diagnosis, I was certain that I had a very short length of time to live. And, the short time ahead promised serious decline in quality of life. I fell into a black hole of depression.
But, both my husband and Gabriella Graham, the founder of PMP Pals, pushed me to move forward. I decided to go big – I contacted Dr. Paul Sugarbaker, the leading HIPEC/CRS specialist in the U.S. He accepted me as a patient and performed my CRS and HIPEC in early 2009.
I credit Dr. Sugarbaker with saving my life by meticulously removing all visible tumor (and many organs or parts of organs to which tumors were tightly attached), doggedly working through the troublesome adhesions caused by my earlier surgeries, and leaving only the tiniest of tumor cells to be successfully penetrated and killed off by the HIPEC he administered. Since 2009, my status has been “no evidence of disease” – NED. Dr. Sugarbaker is now retired, but still active in scholarly research, including using his vast patient database to look for patterns, draw conclusions, and propose treatment improvements.
My story is NOT a road map for how this disease would be treated today. When I started my journey, information on this disease was very hard for patients to come by. The internet was just starting out, and medical information was not yet readily available, especially on rare diseases. I relied too much on my doctor’s confidence and advice about how best to treat this disease. I had no reason to doubt his advice or treatment; but, I had no information about how other patients were being treated. Don’t repeat my mistake. Learn; talk with other patients; research; talk to other doctors.
I believe that most patients in my condition now would be sent to a specialist for evaluation for HIPEC/CRS very soon after diagnosis. My disease was already quite widely spread throughout my peritoneal area in the first surgery, but with lab results showing low-grade LAMN type of PMP, I should have been considered a perfect candidate for HIPEC. Waiting all these years meant that it was sheer luck that I was still considered operable. Dr. Sugarbaker was able to remove all visible disease, including tumors bound by adhesions and scar tissue; and I was able to retain essential organs and enough of my large and small intestines to return (mostly) to my normal lifestyle after CRS/HIPEC.
In this community, we learn from each other. Here are some lessons I’d like to share from my 25-year journey.
- Find an appendix cancer specialist, very early on. This is essential. We say it all the time in PMP Pals. We mean someone with significant experience with cytoreduction surgery, with HIPEC, with post-surgery surveillance, with reading scans of patients with this disease. My local surgeons did not have the experience to guide me as well as my situation required. It’s that simple. I want a specialist who talks about appendix cancer, reads about it, does surgery for it, prescribes chemo for it, thinks about it, sees patients with it – every week. These are the specialists with the best information on what can be done for you.
- Community is important. PMP Pals is your community. We like to say, “You are not alone.” In 2008, when I was mired in depression for perhaps having missed my opportunity for life-saving treatment, Gabriella Graham, the founder of PMP Pals, told me to find someone else to treat me. She gave me the encouragement, know-how, and confidence to reach out to Dr. Sugarbaker. After surgery, I attended my first PMP Pals gathering in 2010. After 13 years of living with this disease, I finally met other patients. Before I found PMP Pals, the truth is that I was And, my journey was negatively affected by that.
- Second opinions are vital. As you can see from my story, if I had stopped with the first specialist I sought out, I probably would not be here today. There are so many Pals who say the same thing when they find us. They were told they are inoperable, they were told they are too old, they were told their quality of life would suffer too much – so many reasons not to perform the treatment that could be curative. It is mysterious to me to this day how one specialist could say “No way” to surgery/HIPEC for me, and yet Dr. Sugarbaker said, “Yes, I can help you.” The bottom line is that you need to get your records into the hands of several specialists. Even if they end up agreeing — you will still have so much more information and understanding of your situation, and you likely will have learned of palliative care options that can make your life better. This is not about finding someone who will tell you what you want to hear. It is about feeling confident that you have taken all reasonable steps to find the best options for yourself.
- New treatments will become easier to access. Though we’ve all heard of HIPEC by now and know that it is the standard of care for the right patients, this was not always the case. In the late 1980s and into the 1990s, Dr. Sugarbaker had to fight to advance HIPEC/CRS for patients like me. The accepted “wisdom” in those decades was that patients with peritoneal surface malignancies were not good candidates for surgery, there was no clinical trial data showing efficacy of HIPEC, the patients would not likely tolerate the grueling treatments, and they would likely die soon anyway – so, why bother? Sugarbaker and other pioneers slowly earned acceptance of HIPEC/CRS in the medical community. New treatments will emerge and will become more widely available. Stay hopeful.
- Don’t look back; look forward. Some days I fight to live normally, to be active, to travel, to watch a movie without jumping up 5-10 times for a bathroom break – because I am living without a third of my small and large intestines. And, on truly bad days, I am angry, resentful, and very low because I think if I had done things differently, if my first doctors had done things differently, I would not have lost so much in my last surgery. BUT, I cannot change my history – I am not going backward, so why look to the past? I force myself to stay in the present, to focus on processes (diet, medication, healthy habits) that can help me, even if only a tiny bit. And, I look forward – to things I want to experience, to making my life better, to helping someone else live better. Enjoy each day. We are lucky to be here.