Cancer treatment checklist

I found this at a blog written by a woman who had metastatic breast cancer. Due to HIPAA and Phil's reluctance to ask his family for assistance, we were helpless in helping him battle his disease. He was brave, determined, combative and very angry. He'd already had a stroke (retinal occlusion) and had a number of health problems which he chose to ignore. After his death I found a letter written by a cousin suggesting that he not try going through this alone, to accept help. He disregarded her, too. The mistakes I've seen were compounded by a very small thing yesterday when we received a sympathy card from the doctor he trusted most and told us never to question her advice. His name was wrong in the card! Doctors, too, are helpless if a patient is noncompliant. And he definitely was. But he had amazing faith in her, not withstanding.

Lessons Learned Checklist:

1. Expect mistakes from your health provider;

2. Ask critical questions at every visit. Take a written list of questions in order of priority. If you get home and realize something is not clear, contact your doctor again;

3. Get a friend or family member to serve as your advocate;

4. Communication between doctors is absolutely critical. If a Radiology report indicates possible metastatic disease or something equally alarming make sure you get a definitive diagnosis. Rule out the worst-case scenarios. Make sure the doctors involved have talked;

5. If you aren’t confident about the doctor’s diagnosis, ask your doctor to review your records with colleagues to see what might have been missed;

6. Get a second opinion;

7. Choose doctors who take time and listen. Ask for a copy of the doctor’s notes to ensure your issues are documented properly. This also ensures the doctor heard what you said;

8. Ask specialists to take a “fresh look” at your case;

9. Make use of hospital patient advocate resources without delay.

Kidney Cancer organization honors Ann Hull

Today we are honoring our friend Ann Burkhart Hull, who passed away on Saturday evening after a courageous battle with aggressive kidney cancer. All of us at KidneyCAN send our sincere condolences to Ann's husband Jason and their three children: Ellie, Amy, and Joey.

Ann was a truly special member of our community. We remember her positive spirit and sweet disposition in the face of daunting treatments. She was active in the online SmartPatients group and was known for her kindness and support of other patients as they navigated their own diagnoses and treatments. Ann was an inspiring voice for all of us at our DC Advocacy Days, where she and Jason spoke to congressional representatives about the need for kidney cancer research funding.

Brenda Knapp, KidneyCAN Treasurer and co-founder, writes, “From the first time that I met Ann at a Rock the Cure fundraiser in Virginia Beach, I could see she was a fighter and wanted to make an impact on kidney cancer. I was always impressed by her positive, can-do attitude and her wonderful smile.”

Ann faced her battle with grace. In a recent Facebook post from the hospital, she encouraged us to “Take a minute today to enjoy your view from wherever you may be!” Today, for Ann, we will try to do just that.

Update on our son

On October 1, 2019, our son had several seizures and was diagnosed with glioblastoma.  He has endured a lot in the last four months including side effects from the standard treatment for this disease, surgery, radiation, chemotherapy and steroids to reduce brain swelling.  Thursday he had another MRI and today consulted with his doctor.  He posted the following on Facebook.

"Hi there. MRI shows tumor growth. Docs don’t know if this is actual tumor growth, or scan findings are related to swelling from treatment. I’ll continue current treatment plan for 2 months and re-evaluate. Pray my symptoms subside. Love you all.  .  ."

Final day of radiation

Phil's final day of radiation was yesterday. It was a shock for me to see this photo. I'd never been to the Zangmeister Center where he had the procedure.  Seizures on October 1, 2019, were the first warning something was wrong. We had just that Saturday gone to our old neighborhood for lunch. So how could he be sick three days later? Glioblastoma stage 4. Surgery a week later, followed by radiation and chemo with 13 bottles of pills lined up and all his notes to ask his doctors and write down their instructions. His family, his many friends (I'm not sure I even know that many people), his church family and his co-workers all rallied ready to help, but mostly he just plowed ahead alone, fiercely independent and brave.

Philip Vincent Bruce--

friend, lover, name of one of the first apostles;

conqueror, popular name among first Christians and saints;

Scottish surname from Normans in France, made famous by the King, Robert the Bruce, brave and independent.

So the name is a perfect fit--we just didn't know that as we sat up late at night 51 years ago trying to pick a name.