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.

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

Postcard from a Pal: Carrie R.

Postcard from a Pal: Carrie R.

Ever wish you could share something special with all Pals, all at once? Want to update us on what you’ve been up to? Share a recent accomplishment or milestone? Brag about your garden or grandchildren? Tell a joke?

Send your note (3-8 sentences, 1-5 photos) to tara@pmppals.net. We’ll include your Dear Pals message in an upcoming newsletter! Here’s one from Pal Carrie R. from Randolph, MA (just outside of Boston):

Dear Pals, If you asked me a year ago if I would be joining a group of cancer survivors and meeting them in another state, I would have told you absolutely not. Fast forward a year and my answer is ABSOLUTELY! This group has been my “go to,” my saving grace over the last year.  I do not think I would be mentally in a good place without everyone I have connected with. It was such a wonderful feeling to meet in person with people whom I have only seen in a 2-inch cube on my computer screen. While being in Milwaukee gave me such HOPE, the weekend was filled with knowledge from the medical staff who spoke about various topics even touching on nutrition and sleep, to the beautiful botanical gardens. The evening reception was fabulous as well because we sat and mingled with our new friends, never a dull conversation. Late night Irish bars were fun too!  Next year I am sure the crowd will grow. I do not plan on missing a Pals Meet-Up, because it was informative and fun, and most importantly, it was very emotional meeting the people who have had a part of carrying me through the last year. I am proud to call you all my friends and look forward to Meet-Up ’24! Your Pal, Carrie R.

Pals Perspectives: Racing With Stage Four

Pals Perspectives: Racing With Stage Four

Ariel M. stands in Utah after her most recent running race.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:

Ariel M. sports a strongman pose with her belly scar and proud momma grin.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!