Among the Safety of Other Survivors

Posted on by Claremary P. Sweeney

I’ve written about Sanctuaries in past blog posts. It’s a favorite theme of mine – those places where we can speak freely, laugh loudly, cry quietly, seek peace, find companionship.  In our minds, “Sanctuary” can conjure up a myriad of images – places where we feel safe. But safe places are not solely dependent upon the security of walls. Sanctuaries also can be found right out in the open, the best of them nesting quietly within a gathering of people working toward a shared goal.

Recently, Charley and I attended the Zero – The End of Prostate Cancer Annual Summit in Washington, D.C. (This is the group that has helped us with the incurred cost of drugs needed in the five-year clinical study that Charley, along with 1,499 other men are part of.)

For this Summit,  they’d asked Charley to be on a panel and talk about the “Financial Toxicity” cancer patients and their families face. In addition to workshops and sessions during the three days of the conference, we’d also attend scheduled meetings with the Senators, Congressmen and Congressional Staff from Rhode Island in regard to pending bills and funding. Prior to our trip, we’d studied the reading materials and took part in their Webinar. But the two of us were still unsure of what the actual experience of our first Summit would be like.

The first night of the conference, we listened as a survivor told of his experiences from his diagnosis to the present day. From the soft chuckles following some of his stories , he’d obviously been through many of the same experiences as other men in the room. He spoke about first being told by a doctor that his PSA was rising. “And what do you think was the next thing that came out of my mouth?” he asked our group. Resoundingly there came a unified response, “What’s a PSA?” (Prostate Specific Antigen is a protein produced by cells of the prostate gland. Levels in a man’s blood test are used to determine if cancer cells may be present.)

Zero Prostate uses much of its money to get the word out about the importance of check-ups and PSA tests for men. That’s just one part of the quest for a cure.  But many doctors still need to be schooled in understanding what tests and treatments should be done. They need a better understanding of the “whys” and the “whens”. Charley’s doctor never told him his PSA was rising. It wasn’t until he transferred his records to my doctor for a routine check-up that he was informed his PSA was doubling (at which point he, too, asked, “What’s a PSA?”). He’d had no symptoms but he was sent for a biopsy which showed the need for further treatment. When the urologist came into the room to give us the results we were met with, “Good morning Mr. and Mrs. Sweeney. The results show you have cancer.” As simple as that. “You have cancer.”

And all of the men and women in that room could fully understand the impact of those three words. They, too, had lived through this. The energy and the laughter and the enthusiasm to the speaker in that room and through the events of the next few days was palpable. These were people on a mission to make sure other men did not have to face this without the resources to help them and their families navigate through this potentially debilitating experience.

During the workshops the next day it became apparent that these advocates had been at this for a while and they already knew what had to be done. Charley and I  were the new kids on the block and the only ones there from Rhode Island. We had a lot to learn and we paid close attention during all of the sessions.

And the overall feeling throughout was that hope was everywhere. It permeated the rooms, the corridors, the elevators.

Now, feelings are something you learn to cope with when cancer suddenly enters your life and the windows are flung open to let emotions rush in.  I remember it all. I watched as Charley dealt with all of the unchartered territory that was part of the “Program.” I held his hand; had conversations about things I’d never imagined we’d have to face; researched the internet; asked questions of his doctors; ran interference with people who, for whatever reason, seemed intent on causing him unneeded stress. In short, like every woman in that room, I became his advocate. I went through all the stages; all the emotions those other wives, mothers, sisters, daughters and friends had experienced.

Disbelief as the person you love is told he has cancer; Helplessness as he’s wheeled into an operating room; Uncertainty as you wait hours for the surgeon to come out and give his report; Determination that you’re going to beat this together; Disappointment in people who are not there for you when you most need them; Gratefulness for the people who are there for you; Thankfulness on waking  every morning and realizing how precious each day has suddenly become; Anger; Fear. And always, underneath it all, the sadness.

Everyone at that summit could identify. But it was the feeling of hope that they’d  brought with them to this conference. I’ve never been in a place filled with so much hope and energy.  It was a sanctuary. This was a place where no one was a stranger in a strange land. We were all members of the same tribe, having gone through the same rights of passage and we had earned a place there because of our shared experiences.

The Summit was a safe harbor where resources were made available. And it was a  place where men could discuss, with seriousness, what they had been through and then laugh out loud together at some of the more “indelicate” moments of their journeys.

What this Summit gave to us was invaluable. We, who, at times, had been dependent on doctors, nurses, medicines, treatments and everything else a critical illness brings with it, were being empowered. We were being trained to be the new advocates who would return to their home towns ready to spread the word and help others with our knowledge and energy.

One of the most empowering experiences was spending Wednesday on the Hill, meeting with our Representatives in Congress and educating them to the importance of funding for cancer research. And the men, the survivors, would be telling their own stories which in the end, would make the difference.

When we met with Senator Whitehouse, Charley told his story. He was supposed to die years ago, but we did not accept the prognosis. We insisted he be placed into studies at Johns Hopkins and now, ten years from his diagnosis,  he’s involved in a study which has placed his aggressive cancer  into remission. But the funds that had been provided by Zero for one of the study’s drugs had dried up last summer, with three more years of research still needed to be completed. A top study in the nation had been compromised because the funds were not there for some of the men to continue. All of our Reps understood that Charley wouldn’t be standing with them, if not for this research which could eventually lead to a cure.

At the end of the story, Senator Whitehouse turned to me and said, “I imagine you’ve become quite a good advocate, by now?” I explained that Charley was a very capable man who could advocate with the best of them.  But sometimes, when needed, I jumped in because we were a team. I further explained that over the years we’d carefully trained people to understand,  “They could either deal with St. Charles or (pardon my English) they could deal with Bitch Woman!” (The smarter ones always chose the Saint.) The Senator laughed and grabbed my hand to shake it. “My wife would love you!” he roared. “That’s because she’s from Rhode Island!” I roared back, pumping his hand even harder. (Rhode Islanders are a breed unto themselves. It goes back to Roger Williams.)

At Senator Reed’s office we schmoozed for a while about our up-coming high school reunions. I informed his staffers that “Jack was the most popular boy in my all-girl’s school because he was always available to escort anyone who needed a date. He was a kind boy who’d grown into a kind man in my estimation. He listened intently, as Charley explained what we were asking for and then told his story.

At Representative Langevin’s office we had our picture taken and he confided in us that his father had died of prostate cancer and his brother was a survivor. He understood the importance of funding research for the cure we all feel will be inevitable.

As we headed for the airport on Thursday, I checked Zero’s Face Book Page and there was the news that the final version of the fiscal year 2017 Defense Appropriations Bill which includes $90 Million for the Prostate Cancer Research Program finally had been voted out of committee. The following week, it was approved by the House.

We began to realize that within 24 hours, all of our personal messages to our Reps had made a difference. It was not only affirming but incredibly empowering for everyone. And empowering is what Zero does best.

If you know of anyone, any family or friend, dealing with prostate cancer, please give them Zero – The End of Cancer website.  (zerocancer.org) You could save his life.

    Have a peaceful week.

 

 

 

73 thoughts on “Among the Safety of Other Survivors”

  1. Clare, I can hardly close my mouth, my jaw has dropped so low. I had no idea you and Charley were dealing with prostate cancer. I’m pleased for the success he’s having in battling it and for the help Zero has given him, and for the help you’ve given Zero. Sanctuary also means safety in numbers, safety with people united in common cause and goal, safety in advocacy. This is the first I’ve ever read about Zero – thank you for the information about a worthy foundation. Best wishes for a total recovery for Charley and all men dealing with prostate cancer.

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    1. Sharon, You’re up late tonight. I actually re-wrote this post three times. There was so much information and I kept trying to shorten it. I finally gave up and published the last version tonight. I haven’t been spending much time reading blogs because everything has decided to come together all at the same time. The Summit, the illustrations for the children’s, edits on the mystery and the day-to-day things we all must get done. I thank you for this comment. I’ve always believed in my heart that Charley would be the first man cured of advanced prostate cancer and with this latest clinical trial we are so close. I hope sharing the many resources that the Zero Group has to offer will help others to have a much smoother road than we’ve had over the past 10 years. So much has been accomplished! I promise to visit you soon. Clare

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  2. Ethel, I am so thrilled!!! All y’alls hard work paid off!! Big time!! Thank God! Thank you and the St, for all you did!! B woman is funny!! I wouldn’t want to cross her!
    This post isn’t too long, it’s just right!
    Thank GOD Charley switched to your Dr!! The alternative would have been unthinkable!
    And what an abrupt way to put it. Don’t Drs have any empathy, or compassion???
    Love, Lucy

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    1. Hello, Lucy. Yes, it was a very productive week and we’ll attend next year’s summit with a lot more knowledge. Bitch Woman is a real Hoot! Just ask Charley!
      We’ve found that many doctors are very frank, especially about cancer. After he told us, he gave us very good advice and arranged for Charley to be treated at Johns Hopkins. This is what probably saved his life, because they have so many clinical studies there.
      Glad you’re still checking in. How’s the computer situation going? Hope you’re connected again soon. Love, Ethel

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      1. Dear Ethel, oh good! I’m glad he didn’t just drop that bomb, and run!
        Fri morning I have an appointment for a technician to come to the house. Next week I’ll be sure and let everyone what happens!
        Love, Lucy

        Liked by 1 person

    1. Osyth! You missed another big storm here in the North East. Hopefully the weather is much better in France. You can always share whatever I post. I think it will be reposted on the new blog that the Zero Cancer Organization has created. I need to friend you and will go looking for your FB Page after I finish with blog comments. Hugs for you. 🌹 Clare

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      1. Clare I’m away with virtually no internet hence my late response. Do please friend me (I think you know my real name but otherwise find me through Clive). I will be sharing this post on Tuesday when I get back and I’m delighted to be able to do so with other things you write. I also use LinkedIn to good effect where I have nearly 2,000 connections. Weather here is glorious and I am not at all sorry to have missed that mighty storm . I really hope that’s it for you now. X

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    1. Thank you, Mary. From political posts to those on cancer. And it appears, they are intimately connected here in the US. I see that Scotland is once again trying to make the break. Theresa May is not a happy camper. This should be interesting.

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      1. I’m not sure what will happen. But all the promises made days before the last referendum have been broken and all the honeyed words about taking Scotland’s views into account on Brexit have proved meaningless. Theresa May seems to forget as well that she was never elected as Prime Minister – more or less got the job by default.
        Interesting times ahead that’s for sure.

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  5. Thank you Clare for this post, I relate a great deal to much of it. I am glad for the outcome of your summit visit and I appreciate you sharing yours and Charlie’s story – very important.

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    1. Terry, How are you? I’ll visit you today to see how your own cancer journey is faring. Yes, although this is primarily about prostate cancer, all cancers are interconnected. We know that once a cure is found for one, other cures will start to fall in place. It’s so nice to read your comment and I will check in soon with your latest posts. 💙

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  6. Wonderful post! Much of what you said is true of any cancer diagnosis. I had breast cancer 13 years ago and was part of a new treatment where a radioactive seed was placed inside my incision through a catheter. The other group to receive that treatment was the prostate cancer guys. It was in place of full on radiation and it’s goal was to eliminate unnecessary radiation to major organs. I get so angry that we are putting so much money in defense budgets and not enough in healthcare in all forms. I am hoping that former VP Biden makes some strides in cancer research. I am very cognizant of the fact that we are one catastrophic diagnosis away from complete bankruptcy. As a side, my nephew was diagnosed with bladder cancer after his family doc treated him for over a year for bladder infections. The urologist told him he had cancer at his first visit. He was fortunate that Sloan Kettering isn’t too far away and had some very sophisticated treatment as his cancer was far along. He’s all good today with no sign of cancer. My brother is a prostate cancer survivor (diagnosed in the late 80s) but he didn’t have the aggressive form. I wish Charley the best and hope he continues to beat this thing.

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    1. Thanks, Kate. We are certain that once a cure is found for one cancer, the connections will be made and cures will follow for all cancers, Prostate and breast cancer have many similar factors. I’m always happy to talk with survivors. They give so much hope to others who think they’re is no hope. The importance of getting local physicians to understand the signs better and refer patients to specialists is obvious in your nephew’s situation. Sloan Kettering is where the clinical study Charley is now in originated . Charley is one of 1500 men nation-wide in this study and his results have been phenomenal. Very few men enter these clinical trials because of the time and travel involved, but they are critical to finding that cure we are all waiting for.

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    1. Charley and I are a good team. My dad died of prostate cancer and when Charley was diagnosed, I became tenacious. I had no intention of losing him and made that very clear from the beginning. This group, Zero Prostate, is such a wonderful resource and anyone who needs their help is welcome with open arms. I hope the word is spread and their website shared. Thanks for dropping in and I look forward to joining you in your travels later today. See you soon. Clare

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  8. Claremary, you and Charley have been on a rough road these past years. You have taken control of your lives and forged ahead to recovery. Then you have shared your information and worked for a cure. Congratulations for being alchemists and refining pain into victory.

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    1. Bernadette, I will be going to the Senior Salon in a few moments to share this post and read some posts from other bloggers. You’ve certainly set a high bar for sharing and I’m just following in your path. Thank you for your comments and all of the wonderful information that comes from your site.

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  9. quite a lot fo our friends have suffered from this, but at least two of them have been cured. At first none of them were happy to even mention it, but thriugh the wives, it came out inot the open and several of them (including DH) found they were all in the same boat. They are pretty quick here in Spain to sort it all out and then keep regular re-tests.

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    1. At the Summit, many of the men agreed if it weren’t for their wives, they would not get checked, let alone deal with their illnesses. I’m findindg that other countries have much more reasonable drug rates and treatments are not as expensive. And here in the US our government is trying to provide less health care for those who truly need it. “Make America sicker again” should be our new motto.

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  10. Claremary, there is such great power in teamwork. Its good to know that your support and Zero make such a difference. I do hope for more investment in treating cancer and other diseases… One of my old classmates has done some great work in the Royal Marsden in England.

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  11. Jumped over from the Senior Salon
    ~~~~~~~~~~~
    What an important post – thank you for sharing it on the Senior Salon or I would never have seen it. My father’s life-long, otherwise healthy best friend died from Prostate Cancer. Thank you especially for your political advocacy. Appropriation Bills usually require human faces on diseases or disorders, and you have helped raise awareness for medical research funding overall with your actions. I am very grateful. You have my admiration and my prayers, and a suggestion.

    After an initial investigation years ago now, I have been doing recent research on how gluten affects the body for Celiac Awareness (in May – but I do my Advocacy Calendars months ahead since they are time consuming). I am aware that many folks believe that going gluten free is a diet fad, but not only have I learned how and why it is a problem, I went gluten free myself several years ago (prophylactically) after hearing from many experts who have spent 20-30 years researching.

    Non-Celiac Gluten Sensitivity is not merely a problem for the gut – and Celiac disease is not, by far, the biggest problem that can result (which is what *most* doctors still believe and test for, btw, which ONLY catches Celiac). it can affect ANY organ in the body (including the brain), and often masquerades as other diseases, since it usually affects areas of the body already weakened.

    There is a lab test – but you must INSIST on the newer 10-factor test developed by Cyrex Labs (cyrexlabs dot com for info), not the established 1-factor test *most* doctors still use (which returns false negatives in the *majority* of cases tested.) You are testing for the presence of antibodies in the blood – the videos below explain why that is important and how that works.

    No relationship of any sort to the field, the scientists or the labs, btw, simply sharing.

    If you or any of your readers are unaware, there is excellent plain-language information in the YouTube videos of Dr. Thom O’Brien (theDr dot com). He is the field-recognized expert advocate who put together the Gluten Summit and travels the country and the world educating doctors, especially on what is now diagnosed as Non-Celiac Gluten Sensitity by doctors who know the latest on gluten – including newer tests.

    If he has not already eliminated gluten, you may well conclude that it is an important step in your husband’s journey toward radiant health. In ADDITION to what he is already doing, btw, not instead of. My best to both of you.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to educate a world!”

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      1. You are most welcome I’m relieved to read that you didn’t consider my comment intrusive. It was truly well-intended.

        From what I’ve read, going gluten-free can’t hurt and it might help significantly (but note that those who cheated, even a little, didn’t get the health benefits once symptoms appeared – the story about the nun and the communion wafer showcases that best).
        xx,
        mgh

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      2. Madelyn, I love hearing from other bloggers. It’s the best part of the experience and truly illuminating, not at all intrusive. I’m glad that Bernadette offers us the opportunity to share on her Senior Salon. I’ve met some of the most interesting people there.

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      4. I was just reading one of your posts and we definitely feel the same way about blogging about politics. It’s not what we had planned when we got into this blogging world, but it’s what is now necessary. I got a laugh from the cartoons and the link to the Netherlands video. Thanks

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  12. Dear Clare, from your previous posts I know what you’ve gone through and reading this post make me feel good, because you are not only the powerful fighter, but you also is a powerful friend to many people. Spreading the word on such awful disease is a very useful thing, it can really save someone’s life. Such posts like yours make me always think more about our lives and the problems that might occur, I would like to evaluate even more each minute!

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    1. Ann, How are you this morning? I must see if the snow is melting in the Ukraine and visit with you today. You, too, are a fighter and are able to use your wonderful talents to help others.
      Thank you for your, always,very kind comments and I wish you a peaceful weekend, my friend.

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      1. You are so so kind, my dear Clare. Snow has completely melt here, we have real spring, though this morning here was raining, but birds are singing, sun shines, and crocuses are blooming with snowdrops…
        You too, my dear have a lovely spring weekend! Warm hugs!

        Liked by 1 person

  13. Wonderful post – very informative and uplifting. Your husband is lucky to have you on his side. I know what you mean about sanctuary. It’s the way I feel when I walk the halls at MD Anderson. So much hope and positive energy.

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  14. Good to know that important people listen to you and you can get results. I wish you and Charley all the luck and strength in your ongoing battle against this pernicious disease xx

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  15. Clare, this is such a moving, powerful, and insightful post. I’m sorry to hear about the struggles Charlie and you have had to go through, but uplifted by your determination to persevere — and to encourage others. Being in a space where others understand and are similarly hopeful and determined — what a good thing that was, as you’ve clearly described. All my best to Charlie and you — you are obviously a great team.

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    1. Thank you, Cynthia. Messages of hope are clearly needed now in all areas. And there is amazing power in numbers, as we are seeing now in this country. The Women’s March in January has started an incredible wave of caring for each other and I’m sure this will motivate others to find a cause that needs support and go out and become one of the voices.

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  16. Wonderful post, Claremary. Such groups should be highly commended for their support. What they do in the lives of those affected and their families can’t be quantified. Unfortunately, when my late dad got the dreaded Cancer, there was no such group back home to support the family and it makes me glad to read this.

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    1. Charley has spent the last two days talking with a man whose cancer is progressing. The family is in a panic and Charley has used his resources and his own experiences to give him hope and lead him in the right treatment direction. It is so important, Jacquie, that men given this diagnosis find a way to be empowering, because it is such a devastating life-changer. My dad died of prostate cancer many years ago and there was nothing for him or our family to really help support us through it all and give us hope. I am sorry for the loss of your dad in your life. It is a great void that can never be filled. I also know you are the kind of person who loves to share and help others, too. Have a peaceful week.

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  20. Thank you Claremary for such a frank and informative “essay/report.” You don good girl, and a handshake for Charley.
    Of all the things you’ve written here, the one standout for me is the bit about the emotions you have gone through.
    They kinda match the ones we go through with Alzheimer’s as we become, sometimes reluctantly, advocates for our loved ones. Okay if I use that?
    We should have such meetings with our representatives up here.
    Godspeed Charley. Thanks Claremary.

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    1. I knew you would understand about all the emotions we share. Anne had you with her through it all and you continue her memory in all you do, so she’ll never be gone. Being in love can bring out the fighter in all of us and that can only be a good thing. Have a peaceful day, my friend.

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  21. Hiya Clare > Long time no see > Phew I had no idea about this. I admit to skimming the last part. How are things now then? Your post fills me with dread. From the sounds of things Charlie is doing ok though right?

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    1. Andy – Thanks! Doing great and continuing to work at finding a cure for this cancer. We were at Johns Hopkins yesterday and his scans were fine and he is still in remission. Our next steps are to start getting into the area of genetics and DNA. this should prove to be very rewarding and very interesting. I will make sure to check in with you soon. I’ve been away from blogging for a few weeks, but hope to write a post soon – and read some friends’ blogs, too. I just gor back from working on the layout for the mystery book with the publisher and it is finally taking the shape of an actual book.Chat a bit more later.

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      1. Hey Clare > Glad things are working out there. I guess in remission means your on a chase to get rid of the cancer completely. Does it involve much medication? Glad the book’s going well.

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      2. Andy, Yes, not cured but getting closer. He is in a top notch clinical study using two very expensive drugs and is monitored every four weeks with blood tests and scans. I’ll have some time tonight to visit a bit with you. Take care and I hope your book is coming along well, too. Clare

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