Where there is Hope there is Joy
September is Prostate Cancer Awareness Month. As many of you know, my husband Charley has been involved in studies at Johns Hopkins in Baltimore, Maryland for over nine years. It’s been a long journey for us filled with extreme highs and lows. Years of operations, radiation, cryotherapy, chemotherapy, hormone therapy, blood tests, CAT Scans, Bone Scans, and participation in numerous clinical studies involving immunology and drugs with names now etched in our minds: Valproic acid, Casodex, Zolodex, Provenge, Xtandi, Zytiga. So many new words and terms added to our vocabulary in the last nine years.
Today, we are in the middle of a marvelous respite. Charley’s been healthy and in remission for over two years. This is truly amazing because his cancer is very aggressive and early on, he was given only a few years to live.
The day his surgeon informed us the operation and radiation had failed to stop the spread of the more aggressive cancerous cells was a turning point in our lives. I had been researching clinical trials since his first diagnosis in 2007 and knew there were viable options. I said very firmly that we didn’t accept the prognosis and if he would place my husband in the best clinical trials, Charley would be the first man ever cured of advanced, aggressive prostate cancer.
Since that day they’ve kept their promise and we’ve kept ours. For the last two years, Charley has been in remission. Not yet cured, but with the help of researchers, doctors, nurses and technicians at Johns Hopkins and the important research-funding organizations, that day will come. Of this I’m certain. Charley is an amazing person and a real fighter. Our good friends prefer to him as St. Charles. (Possibly because he lives with me?) I proudly refer to myself as “Bitch Lady”. You see, we both have a job to do as we take this journey together. His is to be the best patient, following instructions and keeping careful records – enduring all the pain and doing all the hard work to help find a cure for this disease. Mine is to be the advocate, because everyone undergoing treatments for a disease needs someone they can depend upon. An advocate is a partner; someone who’s there to listen and encourage but sometimes the job involves being a protector, which can entail demanding or fighting or just looking very fierce. I’m quite good at all of the above. Whatever is necessary to make sure he gets what he needs, he’s happy and he’s protected from the stress and toxins which can be part of everyday life. Please note – sometimes toxins can come in the form of people with their own agenda. My “Don’t mess with us” look is extremely daunting.
We’ve discovered along the way that it really doesn’t matter if the people you thought would be there for you – sons, daughters, sisters, brothers, wives, husbands, close friends – don’t come forward, sometimes conveniently disappearing into their own busy lives. Denial is how some people choose to deal with serious illness. As long as one person is there for you, that’s really all anyone needs. We’ve been blessed with some wonderful friends and are truly thankful for their support. But, as long as one person is with you, we’ve come to realize that’s really all that’s necessary in the end.
Where there is Joy there is Hope
And so, we found ourselves, on a glorious sunny, Sunday afternoon in late August, on the lawn of one of our favorite places, Tanglewood, summer home of the Boston Symphony Orchestra. The orchestra and chorus would be performing Beethoven’s 9th Symphony. Our friends Carolyn and John had given us tickets. They, too, have been on a similar journey with cancer and truly understand how important it is to savor the lovely days.
So, four people, four kindred spirits, sat listening to the wonderful sounds emanating from the famous Serge Koussevitzky Music Shed in the Berkshire Hills of Massachusetts. Charley pointed to a little boy on his father’s shoulders, his arms swinging in the air just as Andris Nelsons, the conductor, was doing on stage. And in the end, when the “Ode to Joy” rang out, he got down and bounced up and down to the beat. A smiling mother swung her laughing little girl around and around as the chorus and orchestra joined together and people stood up to be part of the rejoicing.
He who has won in that great gamble
Of being friend unto a friend
He who has found a goodly woman,
Let him add his jubilation too!
Joy, beauteous, godly spark,
Daughter of Elysium,
Drunk with fire, O Heavenly One,
We come into your sacred shrine.
Be embraced, ye Millions!
This kiss to the whole world!