An Ode To Hope And Joy

Posted on by Claremary P. Sweeney

Where there is Hope there is Joy

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Charley at Statue at Entrance to Hospital

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.

Checking In
Getting a Stint
Taking a Blood Sample
Scan
Conference with Team
Scan

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

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Charley at Tanglewood

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!

 

Friends
BSO
BSO
BSO
Friends

71 thoughts on “An Ode To Hope And Joy”

    1. And you’ll be in ours. My mother had a mastectomy and a lumpectomy and she was a cancer survivor. I hope you have someone to help you through this difficult time. Thank you for your prayers and your kind thoughts. Please feel free to email me at any time if you would like to talk. Our best to you. Clare & Charley

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      2. You will definitely be fine! To be surrounded by your family and friends makes your journey much lighter and they will appreciate being able to support you, because they love you so much. I’m thinking of you, too. Your friend, Clare

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      4. Than we’ll have no more of that, my Dear! Yes, I wish there was a way to easily take away the anxiety, but you’re a strong woman and will be sharing your positive experiences very soon. Love, Clare

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    1. Yes, we’ve been hopeful through it all and want to make sure that others know the amazing discoveries which will make a difference in everyone’s lives. And when they find a cure for one cancer, the others will all begin to fall in place. Hopefully, very soon. Thank you and I’ll be by to visit very soon.

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  4. Oh Clare! This is a very moving post. You and Charlie have been through some very tough times but I firmly believe you when you say ‘where there is joy there is hope’. I wish you much joy and hope in your life together. Although it appears unnecessary – you already have it.

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    1. Robyn, It has put everything into its proper perspective. We want to share the hope we know will result in a cure for all cancers. And we are always here to talk with anyone going through this. It’s a difficult journey which makes people so much stronger. Thank you for you message. I’ll visit you soon. Your friends, Clare & Charley

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      1. People often say that cancer contained a gift. I could never understand it. But then when it struck, I understood. Despite the pain and suffering, a new appreciation was gained. Greater compassion, kindness and knowledge of the things that really matter. Thank you both for sharing.

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      2. Robyn, There are so many survivors like you in the world who give other people hope. And yes, it changes your whole world, doesn’t it? Every day, every flower, every cloud takes on new meaning. I’ll visit your garden soon. Love, Clare

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    2. I remember that you went through a similar time with your husband and I know it made you stronger, too. I’m sure you think of him often and I hope your days are filled with cherished memories. Take care and thank you for your very kind words. Clare

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  7. A wonderful, inspiring post, Clare. Yours and Charley’s love for, and dedication to, each other is a beautiful thing. And what an appropriate choice of music your friends made for you! Good to see you again, take care x

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  8. Dear Clare, I would like to give you a big and supportive hug. I don’t know you in real life but your posts give me a wonderful image of you. You’re a fantastic bunch of optimism and love. You’re the person who shares love. I can’t find enough words to express how happy I am to hear such good news, It’s a blessing. You deserved for it with your hard work and believe. Never give up! You taught me it, thank you! This world stands on such people like you!❤

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  9. This post moved me to tears – so lovely to read about your wonderful day out and so good to hear Charley has been in remission for two years.
    I know how people can disappear off the radar when you’d kind of hoped they might be supportive – like you I’ve let that go. I chuckled at your Bitch Lady title and the ‘don’t mess with us’ look.
    Good to have you back – missed you. Hope the edits went well.

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    1. Thanks, Mary, you certainly can understand the advocate role and my “Bitch Lady” Persona which I don’t like to put on display, but sometimes have to. Hospitals and Health services and Health plans can put up unbelievable barriers, And I know you get that.
      The edits went well, but I’m obsessive, so I’m sure there’ll be many more. I had actually put Last Train to Kingston aside yesterday, to take a break, but I’ll be visiting our local police station next week to meet with a detective to go over the procedurals and other details, to make sure they are correct. And so, I’m sure there will be more edits to come. I’m planning on publishing it next spring.

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      1. I do indeed know about being an advocate. I’m sure I was often called worse than Bitch Lady, especially the times when dad was in hospital.
        I look forward to reading Last Train to Kingston it in the spring.

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  10. Your post speaks very truthfully about what is needed and what happens during a serious illness. It also made me rejoice at the thankfulness and happiness in the ending of the post. Sending you all good prayers for a complete and total cure. Stay strong.

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  11. Hi Claremary. Thank you for this story. They say the meek shall inherit the earth. However, it doesn’t hurt to have a fierce advocate. You remind me of my words in my About Me, from my poem:
    “Together we trod the boards of life, Together we tread this stage, Together we grew and together we age–We travel together as man and wife.”–hwbryce
    Bless you.

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  13. An inspiring post Clare, it touches my heart in many ways. I am pleased that Charley is doing so well and that he has you as his advocate and caregiver. I feel very lucky, I have Gary in those roles and know someday soon I will be where Charley is. Blessings to you both. 🙂

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    1. Terry, I know how many advances have been made in cancer research and the clinical trials are finding out more every day. I also know, with Gary’s help, you’ll find your way to a cure for your cancer. And I know you both will enjoy your travels even more, because they will give you so many happy memories. 💙 Clare

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  14. I am so happy your lovely husband is doing well. I admire your courage and determination. Like you, I am a firm believer in the need for an advocate. Both my parents had cancer- and as a family we really tried to help them negotiate the quagmire of the health system. Too polite to stand up for themselves, we were often took the role of bull dog. Having said that, we were very grateful when we received good care, and we often did. So happy you are enjoying your music. Best of luck and good wishes to you both.

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    1. Marie, yes, both my parents had cancer, too and my father died of prostate cancer back in 1977. There was very little offered for treatment in those days and doctors were gods, not to be questionned. I think that’s why I’ve taken a strong stance in Charley’s fight. I don’t want him to miss all of the wonderful times my dad missed dying too early in his life. Thank you and I hope you are enjoying home and hearth now that the family is settled back in. 💙 Clare

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      1. I’m sorry Clare. My dad had prostate cancer too. Unfortunately he didn’t let anymore know of his concerns until it was pretty advanced. Poor man was embarrassed. Things have moved on so much since then. I am so happy Charley is doing well. Having a strong ally by your side at times like that is a real blessing. I feel such solidarity with people who are coping with cancer. Love and best wishes. Mxx

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  15. THANK YOU for another stonkingly good read. It covers everything. Strength; hope over adversity; courage; humour; friendship. Well, just everything. I admire the way you didn’t give up and just DEMANDED more. And you got it. Not sure so many others would. I love your determination and generally the way that you always look for the good. That’s a blessing and a strength in life. I hope your dramas will be small ones now… and be sure I wish the best for you both.

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    1. Thanks, Jackie. I would like to think my “old age” would be free of battles, but that is not to be. Just today Charley received a letter that funding for one of the medicines in his clinical study has been cut. So, on Monday, he will investigate and try to find a solution. He is strong enough now to take this on himself. But if things do not work out, the “Bitch Lady” rides again. No wonder I’m writing a murder mystery! 💙Have a great week! Clare

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      1. Yes we all hope for that – no more battle garments, but isn’t it interesting that when we need to find that energy, we always seem to for whatever matters. Good for you ( both)

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  16. This was like listening to the Ode to Life, since your energy and love helps to keep Charley motivated with positive thoughts and serious follow through. Your never flagging love and strength of character is amazing, Clare. Keep on going, Clare and Charley~ together forever! ❤

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      1. I am so happy you mentioned obstacles, Clare. It seems people quit when they should “stand fast.” I like how you say being married to him has made your life better in so many ways! You are welcome but thanks for sharing this. 🙂

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  17. Gosh, what a long journey you two have been on together with this cancer. I really admire how you’ve pulled together as a couple through it all. Love will get you through. Your attitude of positivity is a shining light. 🙂

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  20. Where there is joy there is hope …. I love that sentiment. Where there is joy in your case there is inspiration. This is a particularly moving piece on so many levels but mostly in your absolute refusal to take no for an answer and your ability to doggedly keep going towards the only finish line you will accept – the one marked ‘recovered’. Bon courage to you both, I’m proud to know you

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    1. Thank you so much Osyth. We both hope that people who are going through terrible times in their lives realize that there will be brighter days. Charley and I have agreed to talk about this journey we’re taking to give hope to others and to show that an illness can not define you if you refuse to allow it. And we know there will be tougher days ahead that we must face, too. But we are always mindful of today and this minute. And have I told you lately how glad I am to have you in my life?? Well, I am. Love, Clare

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      1. Bringing hope to others is amongst the most precious of aspirations. You are honest and truthful about your journey to where you are and that there will be bumps, some of them beyond jarring in the road ahead. You do not have to share any of this, you choose to to help others who are scared or ignorant or ill informed or just plain end of their tether giving up. I’m humbled. Xx

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      2. My father died of prostate cancer in 1977 and the word “Cancer”was never said in our house. Charley’s mother died of breast cancer in 1987 because she never told anyone about the growth under her arm until it was too late. When Charley was diagnosed, we agreed it would be totally different for us. We would deal with it and decide what would be valuable to share with others. During the worst of times, it has given Charley the hope that although he may not survive, he can still help other people by what will be learnt from his clinical study results and by sharing the more optimistic parts of the journey with others going through this, too. I really hadn’t thought about using the blog for this. It was supposed to be about the benefits of early reading with young children. The posts have evolved because of what I’ve learned from other people’s blogs and the friends made here. Many of them are personally dealing with disease or are advocates for family members. I don’t mind writing about Charley and me and sometimes, I think, because of many of my posts, some may have the impression we are living a carefree life. We enjoy our time together and have lots of fun, but just like everyone, we have our trials and we get through them as best we can. Thanks, Osyth, and I know you’ve experienced much of the same. Life is quite a humbling experience. Love, Clare

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    1. Thank you Kerry. I feel empathy for the people who must go through difficult times alone. Right now we are in the middle of more red tape as Charley’s funds for one of the trial medications was cut. Just another challenge to overcome – together. Weekend is almost here. Enjoy!

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      1. I saw my dermatologist yesterday and told her my acne sulphur wash was going to cost $500 but she managed to find one for zero dollars. I hope Charley’s doctors and you manage to find a way around it or an alternative. Good luck!

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      2. Kerry, Your doctor is on the ball! We are still working on finding a funding source. It is important on a National level because those men in the clinical study Charley is in will be effected. The cost of that clinical study drug EACH MONTH is over $8,000.00. And it is a 5 year study, so they will lose the last 3 years of the study. The drug company is Johnsons and Johnsons and like most of the US Drug Companies, make huge profits at the cost of human life. No wonder we don’t have a cure for cancer, yet. At this rate it will take decades! Thanks, Clare

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