Why We Go to SSO

Why We Go to SSO

Pals President Adele Jasion and Secretary-Treasurer Charmain Skillman attended the Society of Surgical Oncology’s Advanced Cancer Therapies (SSO/ACT) symposium in February 2024. Charmaine shares her perspective here.

PMP Pals recently attended the meeting of the Society of Surgical Oncology Advanced Cancer Therapies (SSO/ACT) in San Juan, Puerto Rico.This gathering of 200 surgeons and associated professionals is the most concentrated annual educational event in the U.S. for those treating peritoneal surface malignancies (PSMs).

Why do we go to SSO? Adele and I attended and tabled in the exhibit hall to increase exposure of PMP Pals and our programs for individuals affected by PMP and appendix cancer. We spent three days renewing connections with long-time friends of Pals and meeting new physicians just starting their careers. These interactions bring many benefits, such as identifying new speakers and new topics for our HOPE ZOOM meetings and other events. Also, we learn of new research and new treatments in development. And, we continuously rely on these connections for advice, answers, and involvement in new projects, such as our newly-formed Medical Advisory Board (The MAB – more on that in our next enews). We even met three of our MAB Pals – Doctors Dineen, Onchin, and Wiatrek – over breakfast.

Plus, we were very proud to be in the room when SSO/ACT presented the Gabriella Graham Patient Advocacy Award, inspired by the work of our founder. This year, Manju George, Scientific Director for Paltown Development Foundation and COLONTOWN, accepted the award for her nonprofit’s work supporting and educating the colorectal cancer (CRC) patient community. We met with and congratulated Manju, too, and learned more about this large patient organization. We invited her to a future HOPE Zoom to talk about COLONTOWN and medical advancements in the CRC space.

PMP Pals is grateful to participate in SSO/ACT as a sponsoring exhibitor. Your donations allowed Adele and I to represent PMP Pals among the medical professionals who serve our community — your financial support is crucial to our ability to attend this essential event.

PALS ONLINE: Paul in Perth

PALS ONLINE: Paul in Perth

Several Pals are very public with their illness, choosing to share their wellness journey online via YouTube, Instagram, Facebook, and Caring Bridge. All share the hope of helping a fellow appendix cancer survivor navigate the surprises of this diagnosis, along with insider perspectives for treatment and daily living. You can find Pals like Jamie V., Lindsay B., Roberta G., and Ariel M. through their social platforms.

Paul in Perth (aka Paul E. from Australia) has a Youtube channel on which he’s become something of a virtual celebrity. With over 24,000 followers worldwide, Paul chronicles his appendix cancer/PMP journey through the highs and lows. He recently shared his efforts to “wrangle his affairs” by organizing paperwork into binders and explaining his system with family ahead of time. He’s got a really sold way of explaining processes and the how’s and why’s; he’s also always looking for solutions and answers to pass along to others. Be sure to give his videos the “Thumbs Up” to help them with passive income, Like/Follow his YouTube Channel to increase their visibility as social influencers, and comment to let him know you’re listening.

*PLEASE NOTE: The views and comments shared by Pals on their own communications channels are their own opinions and perspectives. Their comments do not necessarily reflect those held by PMP Pals.

PALS ONLINE: Jamie V.

PALS ONLINE: Jamie V.

Jamie Voetsch YouTuberMany of you may recognize Jamie V. as one of the “Pals Angels,” a HOPE Zoom moderator on Wednesday at 6pET/3pPT. She does a lot of volunteering for our group like mentoring other patients 1-on-1, assisting with graphic design (she helped with the 5K logo), cardwriting, greeting at the Meet Up, and keeping us grounded in today.

Many Pals found our community as a result of online search and Jamie’s plugs on her YouTube channel. You can keep up with Jamie and her journey of hope with goblet cell appendix cancer here. In her most recent vlog (video blog), Jamie takes us on a drive to her last Tecentriq Immunotherapy treatment.

For a woman living with disease since 2019 (yes, she went through CRS & HIPEC on her own during the COVID hospital crisis), she’s always got something going! Outside of Pals, Jamie is a talented graphic designer. jewelry maker, TikToker, and lover of all things four-legged and furry.

“I love doing this because I feel that helping people is why I’m still here. If I can help one person feel connected, to replace fear with HOPE, then it’s all worth it,” says Jamie. Check out her sites and be sure to give her posts the “Thumbs Up” to help with passive income and increase her visibility as an appendix cancer social influencer. You can also comment to let her know you’re listening.

*PLEASE NOTE: The views and comments shared by Pals on their own communcations channels are their own opinions and perspectives. Their comments do not necessarily reflect those held by PMP Pals.

John R., Caregiver Companion

John R., Caregiver Companion

John Razzano quickly slid into role of family caregiver when his wife, Mary, was diagnosed with our rare cancer in 2014. That meant playing head nurse, chief paperwork officer, cheerleader, and patient advocate. “During that time, I felt alone and isolated trying to navigate the physical, emotional, and psychological elements of Mary’s treatment. Mary succumbed to the disease in late 2015, and one year later my adult son was diagnosed with Hodgkins Lymphoma. I shared caregiver duties with my future daughter-in-law and today, my son is healthy and in remission.”

During this time, John started a support group with Dr. Fran Baumgarten at UCSD for family caregivers of cancer patients to let people know a community exists willing to support and hold up its fellow caregivers. “We created the podcast, Caregiver Companion to let caregivers know they are not alone. We launched in December 2023, and we now have 10 episodes and publish every two weeks. I think it’s a very useful resource for caregivers. I hope you enjoy it and find it useful.”Caregiver Companion, A Guide to the Family Caregiver of Cancer Patients is available via Spotify and Apple Music. Add to your playlists and leave a review.
Your Pals on Nausea

Your Pals on Nausea

Anti-Nausea Suggestions from Your Pals

graffiti twins puking; image courtesy of Jon Tyson on unsplash.com The Technicolor Yawn, Praying to the Porcelain Goddess, Yodeling Groceries – call it what you want – Nausea and its close cousin, Vomit, are relentless foes when given space to flourish. Sometimes, we experience nausea during post-surgery recovery; it’s a natural by-product of a healing digestive system. Other times, anxiety provoked by upcoming scans or monitoring appointments gets us queasy. And then there are the side effects of chemotherapy or immunotherapy that leave us sick to our stomachs because, well, that’s what those treatments do.

Keeping the Waves at Bay

On a recent thread in the PMP Pals Facebook Group, Pals worldwide shared their personal non-medication favorites for keeping that “Call to Ralph” on hold. Our overall consensus? Get ahead of it. It’s much easier to quell a puking urge than a Tummy Riot. These suggestions below are just that – suggestions. If you need medication like Zofran (Ondansetron), Reglan (Metoclopramide), or Phenergan (Promethazine), work with your medical team to get those meds in your nausea toolbox now. Bottom line: don’t suffer and don’t wait. Nausea and vomiting can quickly turn into a medical emergency. Have what you need on hand.

Tips From Your Pals

Here are just a few of our over-the-counter solutions that you can find in the grocery store, pharmacy, or online:

  • Liquids: maraschino cherry syrup, pickle juice, decaf tea, Pepto-Bismol
  • Candies: GinGins ginger candy, lemon drops, mints, Werther’s, any hard candy that makes you feel good
  • Tablets & tinctures: apple cider vinegar tablets, smelling scents like lavender oil, peppermint oil, or isopropyl alcohol, Bonine or Dramamine tablets
  • Edibles: saltines & crackers, medical marijuana (smoked, vaped, eaten) like Wyld gummies with Indica, ginger ale, bitters & soda, anti-nausea lollipops
  • Physical: roller ball on solar plexus and neck muscles, counting breaths, Seabands acupressure wrist bands, walk outside in fresh air, cold compress on your forehead

Here’s what your Pals had to say about nausea:

“Not sure this will help at all as it is a very different approach. I get nauseous when my body gets tight, especially my neck which then travels to my solar plexus. I have a small ball that I roll on my tight neck muscles and do some gentle neck stretches. I then attempt to lightly roll the ball into my solar plexus to try and relax it. This all has to be gentle or it gets tighter. The other thing I do is counting my breath. I find focusing on my breath also helps relax me and therefore helps with my tightness. I hope you feel better.” ~ Lindsey W.

“I wore Seabands that go on your wrists so long I had indents. I took a multi-approach with using all these plus meds.” ~Nicole J.
“When I got hungry, I got nauseous. I ended up getting some gummies, Wyld brand with Indica. I took a 1/4 of the piece at bedtime and it helped. If I quit after about two days, I’d start feeling nauseous again. It took probably six months for that to go away. I didn’t feel woozy or anything. My doctor asked if I wanted more Zofran and I said no thanks and explained about the Indica gummies and she said good, better for your organs. 🙏🏼💪🏼🧡 They made all the difference to me. The biggest part was that the dose was small enough to relax me and kept the nausea away, but I didn’t feel any other side effects.” Molly C-P.

No Urge vs. Fighting Purge

Take measures to keep nausea at bay by
  • Eating smaller, more frequent meals
  • Avoiding spicy, greasy, or strong smelly foods
  • Opting for the blander menu (bananas, rice, applesauce, toast)
  • Waiting a few hours after eating before brushing your teeth

Do you have an anti-nausea suggestion? Email us and we’ll add it to this list. NOTE: This post is not intended as medical advice. Please consult your physician or medical team for more information and guidance.

Photo by Jon Tyson on Unsplash

Stage 4 is Not My Finish Line

Stage 4 is Not My Finish Line

Stage 4 is Not My Finish Line

4 photos of Lindsey W. and Pals The Milestone

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”.

Lindsey & Brent W.on a hiking trip in CanadaFast 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,
Lindsey W