Welcome back to our podcast, The Patients Speak. Today’s interview we got to sit down and speak with the author of Shining Brightly: A Memoir of Resilience and Hope, Howard Brown. Howard is a Silicon Valley entrepreneur, speaker, podcaster, and two-time stage IV cancer patient, survivor and advocate. He shares the keys to leading a resilient life that drives successful community leaders, business innovators and healthcare advocates.
Today we talked with Howard about his story. How he overcame stage IV cancer 2 times, patient advocacy and clinical trials, and his new book Shining Brightly.
“Life is a team sport, fighting cancer is a team sport. Build your team”
In 1989, at the age of 23 Howard was diagnosed with stage four T-cell non-Hodgkin lymphoma. He was a deer in headlights. His dad went to the library to get a book on cancer. After surviving, 26 years later he was diagnosed again with stage four metastatic colorectal cancer. This time he was married and had a child. He lived it 2 different times and in 2 different eras. One was really analog and the other one was digital.
His first piece of advice was “Don’t do this alone”. It’s way too complex. Cancer diagnosis and treatment cuts you down emotionally, physically, financially, and in relationships. Take someone with you. And, if you can’t take someone with you, someone can be a mentor, can be assigned, a nurse navigator, any type of patient navigator, there’s resources for you.
As the patient, they need to be helped to be educated.
- Paperwork and billing
- Emotional support and balance
- Chemo Brain –
Chemo brain is another name for PTSD, post-traumatic stress. The amounts of stress that you get in dealing with cancer and in dealing with all the medication and the side effects.
- Minimize negativity in your relationships and environment
- Mental toughness – Having a strong, positive attitude
- Release resistance to receiving help
Howard explains that clinical trials are important because that’s the advancements in cures. He also explain in what ways they can improve:
- They need to make it easier to get into the trials.
- They’re missing a whole population called disparities, (minorities, Indian, African American, Latino)
- Making sure that the patient is understanding of the trials, talking them through that trial is really important, you can’t just rush through it.
- You need to make sure that the patient and their caregiving team, including their original oncology team
- They have to rely on your input.
- The patient has to be able to give a way to be able to express feedback, and they need to make that simple. It can’t be very complex.
- They need to be able to either record you or give a patient portal where you can actually give your feedback.
“It’s a complex process, but it needs to be simplified, but it’s an important process because we need to move forward and help save more lives.”
Shining Brightly is a book about resilience and living a life of hope and positive change in this world. Shining that beautiful light that we all have to lift ourselves up, lift others, and then lift our communities up. It’s inspirational, and it tells you how to get back up again when you get knocked down. As cancer patients, families of patients, and care partners, you get knocked down pretty hard, but, still, you gotta get up and out of bed every day and push further and keep going. It’s okay to sleep in bed one day, but you gotta get back up the next day.
We are very encouraged by Howard’s interview today. Be sure to check his book out, Shining Brightly and if you want to connect with Howard go to his website at shiningbrightly.com. He would love to connect.
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If you’d like to read more about well-informed healthcare consumers – along with the 83bar patient activation platform – go to www.83bar.com