Last Sunday Charley and I took a walk together. We love to walk around holding hands, but this was a bit different. It was a 5K walk/run fundraiser for the group that is helping Charley in his quest to end cancer – to find a cure for this disease – ZERO-The End of Prostate Cancer.
Zero is the number men want to see when they get their PSA (Prostate-Specific Antigen) blood test results back from a screening or physical. Charley’s PSA at one point elevated to 178 – not a good sign. He’d already had his prostate removed and had undergone 36 radiation sessions, but his PSA kept rising, signaling the cancer had spread. He was told he was going to die. We decided that was not an option for us.
Forty-five years ago, my dad was diagnosed with prostate cancer. He was cared for at home, thanks to my mom, who learned to administer shots for pain and to my sister, a student nurse at the time. Having no medical proficiency, I was only good for hand-holding and late night conversations. He died in June of 1977. He suffered terribly. I was firmly resolved that this time there would be a different ending.
What followed was a decision to become actively involved in clinical studies at Johns Hopkins Hospital in Maryland. It meant committing ourselves to regular trips to Baltimore. It entailed, for Charley, constant scans, blood tests, x-rays, drug trials, and two operations with long months of rehab.
It continues to this day. Ten years later, Charley is still alive and well and his PSA is now at Zero. He’s in remission. We haven’t found the cure yet, but it’s going to be soon if the government does not cut research funding. This is crucial, not just to men with prostate cancer, but to women with breast cancer and children with leukemia and so many others with colon cancer and brain cancer and skin cancer…the list goes on. When a cure for this cancer is found, others will follow.
If the funding is cut, studies like the one Charley is now in, studies that have placed him into remission, will eventually cease. Only 1% of men with prostate cancer are involved in clinical trials. These trials are time-consuming, they are expensive, and they are crucial in the search for a cure. For years, we absorbed the cost and along with the time commitment, it was difficult. When Charley began receiving Medicare, it was a big help. But the drug costs are off the charts.
Pharmaceutical companies have placed the cost of many drugs out of the reach for most people. And not all of the drugs in clinical studies are covered. The study he is now in involves two drugs – Zytega/Abiraterone ($5,000 a month and not covered) and Xtandi/Enzalutamide ($7,450 a month) In one arm of the study, men are given only the Xtandi. Men in the other arm of the study take both drugs together. Charley was placed in the latter. That’s $12,450 a month on medicine alone. He’s been in remission for three years. It’s a five-year study and the results will have an enormous impact on the path of treatment for men with this disease. The Provenge Treatment he received prior to this study is priced at $93,000. Staying alive and healthy can be a costly business.
We wouldn’t be able to continue in the study if organizations like Zero were not there to help us financially and emotionally. They are an amazing group of men and their care givers. We’ll be attending their annual symposium in Washington this February and personally lobbying Congress to ensure that funding continues so we can reach that finish line and find the cure. In March, I published a post about our first Zero Symposium.
I had promised his surgeon/doctor that if he put him into the best clinical studies, Charley would be the first man ever cured of advanced prostate cancer. That was over eight years ago, after he was told he would not be alive to see his grandchildren born.
Today, he’s picking up his 5-year-old grandson Henry after school. They’re going bowling and then having dinner. He’ll probably read to him from one of the many books Henry loves to share with Grampa.
Charley spent Wednesdays in July, with his oldest grandson, 6-year-old Daxton. Dax took a golf lesson and then they played nine holes and had lunch and talked about all things golf.
And he spent Thursday mornings in August taking 4-year-old Hadley to toy-testing sessions at Hasbro, a local toy company. He’s even been a Grampa toy tester for them. And this month, he’s taking all thee of his grandchildren to the toy store to pick out their birthday gifts. It’s an annual fall tradition. A tradition he would not be enjoying if we didn’t have Medicare; if we didn’t have access to the treatment at Johns Hopkins; if we didn’t have the financial support of Zero; if we didn’t have access to healthcare. And everyone should be afforded these same benefits. Health care is a right and anyone who doesn’t understand that needs to experience what we’ve been through, first hand, without those benefits. Minds would soon change.
There is no dollar value to place on the days we’ve had together and on the time Charley has been given to do all of the things he loves. The value of the lives of others suffering from this disease is incalculable. We’ve been fortunate in the help we’ve received and we want to share our good fortune.
Charley once had a conversation with a family member. He confided in her that he owed his life to me and she “knowingly” informed him that it was actually the drugs to which he owed his life. This clueless, young woman couldn’t have been farther away from the truth in her assessment of what keeps people alive and well. Although the medicine is critical, it’s the continued support of other people that gets patients and their advocates through the hardest of times.
And so, on Saturday night, Charley and I slept at our good friends Jack and Jean’s home near to Boston, where the race was scheduled. On Sunday morning, they had coffee and breakfast ready for us. They’ve been there with us through it all and we are truly thankful for their love, their loyalty and their many acts of kindness.
Then we set out to take our walk together along with 500 other survivors, family members, caregivers, advocates, medical professionals, sponsors. Kindred spirits dedicated to an important cause. We didn’t run. We just strolled along. We weren’t interested in winning any prizes. We walked and talked and held hands. We already had been given our prize – another day together.
If you know of someone who is dealing with prostate cancer, please give him a link https://zerocancer.org or an email firstname.lastname@example.org It could save his life.
If you want further information, just press the words in bold print in this post and if you want to have your voice heard in Congress to ensure continued cancer research funding: goo.gl/ScHcHJ to vote yes on the NDAA Durbin-Blunt Amendment
Have a peaceful week.