Your Pals on HOPE Zoom: Hair Loss, Death Cafes, Multiorgan Transplant
You never know what you are going to hear about on HOPE Zoom (register here)…last week, we shared our common experience and sought-after information on:
HOPE Zoom, Wednesdays 6pET/3pPT and Saturdays 11aET/8aPT
Twice a week, we gather online to talk about appendix cancer. Open to patients, care partners, and support people, HOPE Zoom allows us to ask questions, share our vulnerabilities, and draw on the strength of others to get us through difficult times. We share joys, successes, and NEDs, too! You are welcome to join us according to your schedule. Meetings usually last 1.5-2 hours, but you can leave at any time. Register here for the link valid for Saturdays at 11aET/8aPT and Wednesdays 6pET/3pPT.
This week on HOPE Zoom, we touched on these topics:
- Going on disability and the nuances of SSI and SSDI
- Stage IV Appendix Cancer is not like other Stage IV cancers
- The Shock of Diagnosis and how we cope by consulting Dr. Google or sticking our heads in the sand
- Grasping at whatever we can control or influence
- Remembering we can only control our attitudes and actions
- Accepting feelings of helplessness and hopelessness, allowing the emotional process to unravel
- Having NO need to be Polly Positivity, allowing “Feel the FEELS,”
- Setting aside a time and day without cancer talk
- Acknowledging our internal dialogue “I feel fine. Do I really need to get this surgery?”
- Asking that question and discovering the reasons why you do need to get this surgery: cancer grows, it doesn’t belong there, it crowds out other organs and inhibits normal digestive function, mucin hardens which creates a host of other problems, your health only gets worse-do Inot better, seize the opportunity to get surgery now while you are healthy vs waiting until crisis and frailty
- It’s ok not to be hungry and what might be causing it: stress, body diverting energy to fight off cancer, musin’s internal pressure, So much is being learned about The Brain-Gut Connection
- Remembering to eat your protein!
- The importance of prehabbing and rehabbing, and when to pass the baton to your surgical team
- Yes, you can request to talk to your surgeon before entering the operating room (especially if you haven’t met him in person before)
- Trusting your medical team is there for you after the surgery, too!
- The shortcomings of our respective health systems and feeling left behind
- NEDs and advancing illness
- Anticipation of CRS/HIPEC surgeries
- And a whole lot more!
If you’ve got a question about appendix cancer, PMP, pathology, surgery, and living beyond a rare cancer diagnosis, join us.
Pal Lindsay B. talked with three appendix cancer specialists on the Society of Surgical Oncology’s podcast, SurgOncToday. Moderated by PMP Pals Medical Advisory Board member Dr. Melanie Ongchin of the University of Pittsburgh Medical Center (UPMC), Lindsay spoke about fertility issues facing women with peritoneal cancer diagnoses. Thrust into an immediate decision-making scenario, on top of dealing with a cancer diagnosis, women need solid information in real time to decide how to preserve their options for future parenthood. Joining the conversation are Dr. Trang Nguyen from Washington University and Dr. Molly Kledzik from WVU.
Thanks Lindsay for being a patient advocate and Pals ambassador, and speaking openly about these issues that face women navigating appendix cancer, its related conditions like PMP, and the rare disease journey.
Each year, the Mike Weber Sr. Memorial Foundation holds its annual fundraiser at White Beeches Golf & Country Club in Haworth, NJ. Family members honor the legacy of Mike Sr., an appendix cancer survivor whose legendary impact on his local community lives on in larger-than-life ways. The foundation bearing his name, led by his wife and three children, continues to influence the rare disease space. This year, board members Dave L., Pals Lindsay Barad, and father Jim joined board member Mike Weber Jr. in raising awareness of appendix cancer and inspiring generosity in honor of Mike Sr.
“It’s an amazing event,” notes Dave L. “A true honor to a great man whose amazing legacy continues in his family and their tireless dedication to save others from this deadly disease.
I hope it continues as it has become a highlight of my summer. I played well, one away from shooting PAR, on an immaculate course, with great people. Thanks, Mike, your family, and the army of volunteers. It was a very good day, indeed!”
Over 250 people attended the golf tournament and contributed over $35,000 towards various patient and care partner groups. For more information on the Mike Weber Sr. Memorial Foundation, visit www.goteamweber.com.
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.
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 Living Life: Patient Advocate Lindsay B. Talks Fertility on SurgOncToday Podcast