Around ZuZu's Barn

Charley and I just returned from our annual trip to Washington DC for the Zero Prostate Cancer Summit. Charley is an 11-year prostate cancer survivor as are the others who attend these meetings every year with their advocates. I’m an advocate. Some family and friends who were caretakers come alone. Their loved ones didn’t survive this disease but they want to honor their memories by making sure others have a better chance. 

Sunday was for networking and socializing.  Monday was filled with panels, discussion groups, and featured speakers. The Zero Prostate Group makes sure we are brought up-to-date on every resource available in fighting cancer. You can find more information at their website ZERO The End of Prostate Cancer at http://zerocancer.org

Tuesday is the day we all give back. It’s when we storm Capitol Hill. Appointments with our Senators and Representatives are set up for us to meet, tell our stories, answer questions, and make the ASK. Our ASK this year is for 110 million dollars to be included in the medical portion of the Department of Defense Budget for prostate cancer research. This is separate from the research being done by the National Institute of Health. The research from DOD monies goes to more innovative proposals that possibly would not be considered in the NIH budget. And this is where it gets personal.

Charley just completed a 5-year clinical trial involving two of the drugs developed from DOD research funds: Enzalutamide (Xtandi) and Abiraterone (Zytega). They are the cutting edge drugs which are now increasing survival rates by years. In Charley’s case, they are the drugs which have taken him from a Prostate-Specific Antigen of 48 to a PSA of 0.01. He is in remission and the cancerous lymph nodes and tumors on his ribs have disappeared. 

We know this because the study required Charley to fly down to Baltimore’s Johns Hopkins Medical Center every 28 days for blood tests, bone scans and MRIs. It involved 1,500 men at Cancer Centers throughout the US. On one arm of the study were those taking Xtandi alone and on the other arm, those taking Xtandi and Zytega. The results of the study show no appreciable difference in using one drug as opposed to using both and therefore either drug is effective in placing men into remission. 

Only 3-5% of men become involved in clinical studies because it is time consuming, sometimes grueling, and costly. A months worth of Xtandi here in the USA is $7,450.00 a month. Zytega is $10,165.56 but the most common generic version is around $2,655.28 a month. Sometimes the cost of drugs is covered in the study and sometimes they are not. Zytega was not. And there are no guarantees, as the side effects must be taken into account. One of the side effects for Charley is tiredness and we are noticing memory issues. Those side effects and others were documented by him and noted by the drug company in marketing to patients.

In the beginning, Charley and I had to navigate through the myriad of issues that are part and parcel of a cancer diagnosis. But then, the hospital connected us to the Zero Group and they helped in whatever way they could. Sometimes they found funds for Charley’s airfare. Sometimes they helped find grants for drug costs. But they were always there to answer questions and provide support when we had nowhere else to go.

Last Tuesday we met with our Senator, Jack Reed. His senior policy advisor, Jill Boland, brought us to where he was in a hearing. In case you didn’t realize, the Hill was crazy with hearings on Tuesday: gun control, drug costs, national emergencies, Michael Cohen.

But Jack took time out and left the hearing to speak with us. He’s an important person on the Hill in guaranteeing DOD funding because he is the ranking member on the Armed Services Committee and serves on the Appropriations Committee. After Charley made the ASK, Senator Reed voiced his concerns that this funding might be cut or appropriated for other things such as weapons and walls. I told him, having been in the Army, I understood the need for our soldiers to be armed with the best weapons and equipment. Jack gave me a fist bump. He was a graduate of West Point and served in the army from 1971-1979. I went on to explain that we needed to take care of those who served once they are home. Many veterans are suffering from diabetes, COPD, cancer, PTSD. Twenty veterans succumb to suicide every day. It is critical we maintain adequate funding to care for their physical and mental needs when they return from duty.

And that is the crux of keeping this funding in the budget. I was preaching to the choir. Jack understood. He was called back into the hearing but I know he’ll use his voice for us just as I know our meetings with legislative assistants Jarad Stout, Anna Esten, and Becca Flikier from Senator Whitehouse’s and Representative Langevin’s offices will result in a vote to do the right thing. And when the Zero Champions arrive home, they will continue working in their communities on their goal of ending prostate cancer forever.

And now we’re home. It’s snowing and I’ve taken some time out from editing my latest South County Murder Mystery, Last Sermon for a Sinner, to write this blog post. The fifth mystery in the series, Last Castle in the Sand, will center around doctors and clinical studies. As you can imagine, I have an abundance of knowledge and experience to tap into for background. 

Charley and I appreciate every day we’ve been given together. On a chilly afternoon like today, we sit at home and read and talk and cook. We’re planning a trip in the springtime. He has enjoyed time with his grandchildren: exploring the Boston Museum of Science with his son, Ben, and grandson, Henry; taking his princess granddaughter Hadley to Disney on Ice; watching his Grandson Dax take hip hop lessons and be ball boy for a basketball game at URI. He goes to their soccer games and school performances. He reads and plays games with them and takes them out for lunch. He’s watching them grow up – something he was not supposed to be around for from his prognosis nine years ago.  And the world is better for having him in it.