Aloha Waialae Iki Families!
Gosh, it’s been a while since I started with that greeting! I hope all of you are doing well and gearing up for the holiday season.
Most of you know by now that I left my WIRCA President position to focus on my family. After four years, It was time to pass the torch. While I was proud to be President and especially enjoyed the camaraderie we shared on the Board, it was time to pay closer attention to that little voice inside calling me to move in a new direction.
That direction was chosen for me when I was diagnosed with Stage IV Metastatic Breast Cancer (a rare form of invasive ductal carcinoma of the breast that spread to several parts of my body) in October 2021. Yes, I did all my annual mammograms and self-exams. Yes, I was diligent about keeping my doctor visits and doing all the things you are supposed to do to “stay healthy,” even through COVID. But nothing showed up on imaging and it was a fluke that it was found at all. For some, this would have been a death sentence. I chose to fight!
I read any book I could find, dug up research papers on the latest cancer treatments, attended various webinars and educational seminars online. Joined various Facebook groups about healing and off label drugs. I started meditating, changed my diet, began a grounding practice, found an acupuncturist, reiki healer, read up all the best supplements to aid my immune system and block cancer’s pathways, exercised regularly and even started positive self talk. If you look at my bathroom mirror, you’ll find various words of positivity, inspirational quotes and supportive notes from my closest friends. On either side of my desk are this year’s and last year’s Inspiration Boards. I look at these every day and remind myself that I am strong, loved and to never, ever lose hope.
Cancer demands you stop and take a good, hard look at yourself. You have to adjust your perspective and attitude, re-evaluate your priorities, and change your overall mindset just to stay alive. As a mom, your kids are your purpose. I remain steadfast in my determination to stay on this earth to raise my son, but I have also come to realize that if I don’t also take care of and make time for myself, I don’t stand a chance at fulfilling my goals.
This disease makes changing a family affair. It affects all of us, for better or worse no matter how hard I try to shield them and put on a happy face every day. As a family, we shifted gears to focus on what mattered and do the things we would have otherwise said, nah, we’ll do that next time. While we reprioritized, became more grateful and appreciative of our time together, we also continued to use everyday life as a distraction. I continued to work to give me something besides cancer to think about. Honestly, the routine kept us all from spiraling out of control. Truth be told, we had one foot in gratitude awareness and one foot in denial. As the drugs I was taking became resistant and treatments continued to change, It was time to wake up and find a new direction.
My New Direction
This time, it was time to give back. Yes, I am still fighting for my life, but as I share my story with others, the response is appreciation, comfort and sharing of their own struggles. I’m very proud to say that I am now the University of Hawaii Cancer Center’s Ambassador and a Patient Adovcate. This connection allows me to spread the word about what’s happening at the UHCC. Like many Hawaii residents, I didn’t know they offered clinical trials for those battling rare and advanced forms of cancer. And right here in our own backyard!
I’m even more proud to say that I am also leading the effort to begin their first Patient C.A.R.E (Community, Awareness, Research and Emotional Wellness) program to support patients, their spouses, families, and caregivers. This program will be rolled out in April 2025.
Providing a sense of community and a place for others on this journey to gather, talk story, learn how others are coping or even just take a therapeutic art class or hula lesson, UHCC will be a resource to so many for for the first time. But we need support from the community to help launch some aspects of this amazing resource and that’s where we ask you to learn more, tell two friends, and consider donating any amount that will provide services, care, and support to those facing and living with a cancer diagnosis. The smallest, yet biggest thing you can do is simply tell 2 friends about the Patient Care Program and refer them to the Website!
Under the new direction of Dr. Naoto Ueno, this facility has gained so many strides in advancing research, renewing its National Cancer Institute designation, held by only 72 centers in the nation, and bringing high-quality oncologists and researchers to our island from Japan and MD Anderson where he spent 30 years. By the end of 2025 our island will have many more clinical trials, a state-of-the-art facility to treat patients on island, and most importantly, keep families together! I’m so proud to be a part of this organization and I’m even more proud to say that I am also leading the effort to begin their first Patient C.A.R.E (Community, Advocacy, Research and Emotional Wellness) program to support patients, their spouses, families and caregivers. This program will be rolled out in April 2025.
For me, the clinical trials facility cannot open soon enough. But when it does open, it means no more travel to the mainland, affordability of advanced cancer care, families staying together to provide crucial emotional and physical support and more lives saved on our islands and the Pacific.
As you continue reading this article, you can learn more about what’s happening at the University of Hawaii Cancer Center. You will see what’s in place and what’s needed. You’ll also see how you can get involved if you feel called to do so.
In the spirit of the holidays and as a supportive community, I hope you’ll take the time to learn about this amazing place that I’m so passionate about. If you want to see for yourself, learn more or get involved, I would love to hear from you. Please reach out to me at Susan@AdvocateofHope.com I know I’m asking a lot, but in the spirit of the holidays, and as supportive community members, I hope you will scroll down to take a look at the the information below and help me move the Patient Care Program forward in small and large ways. I’ve tried to break it down into easy to read information that you can quickly scan.
The smallest, yet biggest thing you can do is simply tell 2 friends about the Patient Care Program and refer them to the Website!
Mahalo nui loa for your support to me throughout my personal health journey, and I hope that you will find it in your hearts to assist me with my advocacy for this important program.
Finding and Giving Inspiration to Cancer Patients!
Physician Partnership
Your patient care team may not be aware of the clinical trials available at the UH Cancer Center. In addition to whatever programs they’re directly involved with through their own medical network, you can also them to see if the UHCC program is a possibility for you.
Above all, do your own research and ask your Care Team and work with your Oncologist what resources are available to you, including emotional, financial and caregiver support. Get the conversation started.
For more information, Please contact Tripit Reevesman at (808) 586-5854 or treevesman@cc.hawaii.edu
Fundraising
Your dollars can make a difference for the clinical trials program, and those to patients throughout our islands.
- Our legislators are not funding the UH Cancer Center’s work, so needed funding is not being provided. Contact your representatives, including Donna Kim to let them know you care about this program!
- The NCI (National Cancer Institute) is the primary source of funding. They provide some, but not enough, to carry the $11M operating budget.
For further information, please contact please contact Tawney Sablan at 808-829-0005 or tawney.sablan@uhfoundation.org.
Volunteerism
There are many ways to volunteer for the Patient Care Program. Everything from leadership positions to being a friend to someone in need.
- Tell 2 people about this program – share this message if that helps!
- Lead or attend a support group
- Be a translator
- Give some of your creativity by leading art therapy classes, teaching yoga or hula, or reading to someone.
- Got a Certified Support Animal, add the Cancer Center to your rotation.
Please contact Susan Hirano at Susan@AdvocateofHope.com if you’d like to see how you can help.
Resources & Info for Cancer Patient Care and Services
- The UHCC Clinical Trials Website is www.uhcancercenter.org/patients-families/clinical-trials
- The National Cancer Institute recently designated the UH Cancer Center as one of the top-ranking cancer centers in the nation and awarded the UH Cancer Center $8 million grant over a six-year period. The UH Cancer Center research team also generates nearly $60 million in research funding. The State of Hawaii can do its part to support the UH Cancer Center by allocating funds for the operations (non-research) to ensure the center can continue to serve Hawaiʻi patients and families. Reach out to your representatives to let them know you care about this program.
