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.
Meet Up’24: Scottsdale Necessities & Niceties
Travel can be a bit prickly. Thanks to your input, we’ve gathered up a few details to help you enjoy your time in Scottsdale. Spend more time relaxing and getting to know your Pals, and less time searching for whatever it is you need to be there. PLEASE NOTE: We have not vetted these suggestions; please be mindful when securing third-party services. A listing here does not necessarily mean a recommendation.
EMBASSY SUITES, 5001 N. Scottsdale Rd., Scottsdale, AZ (Click here for complete list of Embassy Suites amenities.)
EMBASSY SUITES SHUTTLE DROP POINTS:
The hotel shuttle runs 10a to 6p, seven days a week, carrying 7 people. Transport is by request with pick up/drop off within a 3-mile radius of Embassy Suites.
AIRPORT:
Phoenix Sky Harbor Intl. Airport (PHX) – 15.6 km / 9.7 mi
ATTRACTIONS: Visit this blog post for more details: See more in this blog post “Cool Things to Check Out in Scottsdale”
Camelback Mountain – 4.8 km / 3 mi
Desert Botanical Garden – 6.5 km / 4 mi
Frank Lloyd Wright Foundation
Great Wolf Lodge Water Park Day Pass – 6.9 km / 4.3 mi
Hall of Flame (firefighters museum)
McCormick Ranch Golf Club – 5.6 km / 3.5 mi
Papago Park – 6.5 km / 4 mi
Phoenix Zoo – 6.5 km/ 4 mi
Scottsdale Fashion Square – 0.5 km / 0.3 mi
Scottsdale Waterfront – 1 km / 0.6 mi
Scottsdale Center for the Performing Arts – 2.4 km / 1.5 mi
Scottsdale Museum of Contemporary Art – 2.4 km / 1.5 mi
Taco Fest at Salt River Fields, 11a-5p – 8.3 km / 5.1 mi
Talking Stick Golf Club – 8.4 km / 5.2 mi
Talking Stick Resort Casino – 8.1 km / 5 mi
Western Spirit: Scottsdale’s Museum of the West – 2.3 km / 1.4 mi
FOOD DELIVERY: Just Google It! GrubHub, InstaCart
HOME HEALTH ASSISTANCE: TBD
HOSPITAL: Scottsdale Healthcare Osborn Medical Center – 2.8 km / 1.7 mi
LOCAL SUPERMARKET/GLUTEN-FREE/ORGANIC FOOD: Safeway, half-mile away
MEDICAL SUPPLIES: TBD
NURSING SERVICES: TBD
URGENT CARE: TBD
WHEELCHAIRS: TBD
We’ll continue to build out this list so that all you need is in one place… on this page. We want to put you at ease so you can be YOU with your Pals.
Amber is the official color of Appendix Cancer Awareness. It symbolizes the courage, strength, and resilience of appendix cancer patients, care partners, and their families. Working together, we aim to raise awareness among a wider community through shared messaging. Together we are stronger and louder…tog (ACPMP)ether we can make a difference!
PMP Pals, Appendix Cancer PMP Research Foundation (ACPMP), Pseudomyxoma Survivor, and CANCollaborate are united in enhancing understanding and support for patients with appendix cancer and the related condition pseudomyxoma peritonei. We’re advocating for more patient and care partner considerations, aggressive research to discover new treatments, and approval of existing, off-label uses. The goal? A cure, be it immunotherapy, chemotherapy cocktails, improved best practices, or early detection.
Join us this August as we come together to shine a light on appendix cancer and support those battling this rare and challenging disease. Here’s what you can do:
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 Living Life: Patient Advocate Lindsay B. Talks Fertility on SurgOncToday Podcast