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A Long and Winding Road

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As David and I are sitting in room 4224 at KU Medical Center, we are discussing the long and winding road that has been our journey in the battle against advanced prostate cancer. The last 12 months have undoubtedly been the steepest, most challenging terrain that we have endured.

David has been in the hospital since Thursday, September 20th. Liquid that was accumulating around his left lung was causing severe respiratory distress. He had over a liter of fluid drained, and in 4 days, had to have yet another liter removed. Anticipating this could be an on-going issue, we had a catheter placed below his left breast that allows us to drain the fluid as needed. After numerous tests, scans, xrays, etc. we were told that cancerous tumors have spread throughout his chest. These tumors are a main cause of the edema that he has been battling for months. The tumors are putting pressure on organs and his lymphatic system, which explains the fluid retention. Due to the strenuous testing schedule David has followed this past week, he has been reduced to ice chips. A swallow study revealed that due a combination of the advancement of the cancer and the physical weakness of his body from not being able to eat this past week, he is at risk for aspirating or developing pnemonia, if he swallows and the food/drink trails down his air pipe into his lungs. We have been trying to do tongue and throat exercises to strenghten the muscles, hoping that he will begin to start eating thickened liquids and soft solids. We stopped the MDV3100 regimen and were considering a chemo treatment. After careful consideration, we decided that the risks of the treatment would far outweigh any potential benefit.

We are prepared to make a transition to a new level of care at the Kansas City Hospice House. For reference follow this link to see the site, which contains a virtual tour as well, www.kansascityhospice.org. The Hospice House is a wonderful facility that was designed to provide patients and their families comfort and medical attention once they decide not to pursue further treatment for their disease. While this was a decision we did not want to have to make, we are comfortable that it is the right choice for our family. We would like to thank everyone for the outpouring of love and support that we have received over these very difficult days and ask for your continued prayers that David may continue to be comfortable and that we may spend many more days together.

36 Responses to A Long and Winding Road

  6. David and Mary – I just posted on Facebook but I will post here as well. You are both in my daily prayers for strength in the days ahead. You have both been an amazing example of courage, hope and strength, and David has made SUCH a difference in the prostate cancer community. KC Hospice House is a wonderful place and I have known several families that have spent time there. May God hold you both tight in the journey ahead. Rose Kopecky

  7. I am not religious and I don’t pray much. But I will pray for strength and peace for you all. I lost my dad to this vile disease a year and a half ago following a four year fight. Through those four years, David was a source of information and hope via this blog. My dad would ask me from time to time, “how is the young guy doing?”

    ‘just wanted you to know you continue to make a difference and that you are being thought about by many now.

    Peace.

  8. wishing you peace and comfort on this journey together. Your savior is waiting for you to come to him. Lean on him during this difficult time. He is there for you. Much Love

  9. David and Mary,
    How blessed you are to be together, in the moment and surrounded by your deep abiding love for each other.
    You mean so much to so many – most you have never met but nevertheless your impact has certainly been felt.
    Our thoughts and prayers are with your whole family,
    Your Florida Friends
    Don & Susan

  10. Praying that the Lord surround you with his love and his strength. You are truly a light to us all.

  11. You and your family are in my prayers. I have gained more strength and courage from your posts than you will ever know. We shared 100 bracelets and continue to share the message of prostate cancer awareness. Our journey has been less scary because of your willingness to share yours- I can’t thank you enough.

  12. David, There are many good people in this world but there are only a rare few who can truly be called “heroes.” You are one of those exceptional people. You have no idea the impact your words have had on so many through these many years.”With Mary by (your) side, and God leading the way,” your journey continues. Blessings to you & your wonderful family.

  15. David, and Family. My wife Ruthie and I think of your whole family all the time. We are disheartened the course this disease has taken but we rejoice in the Lord. We pray for comfort in Him to be with you always. My friendship has always been long distance with you, kind sir, and my hope for meeting you was made possible when we met for our one and only time in person in Washington DC last year as we lobbied together to get hope ready for the next guys. I believe that we did that. I write with a tear but one of joy that a beautiful man like yourself, David, ever entered into my life.

    I taught at my church tonight, as usual for a Tuesday night. Our subject was Mary. And as always we prayed…Hail Mary…I love that prayer. As I love this one..

    Kyrie Eleison
    Christo Eleison
    Kyrie Eleison

    Lord have mercy…

    May peace and love in Christ Jesus be with you and all your family always…

    Your loving friend,
    Tony

  16. David you are a legend. You do not know me but I will never forget you and your courageous journey and all you have done to promote understanding of prostate cancer. Robert

  17. Dave and Mary – I stumbled across your blog on Facebook. I want you to know that I’ve been praying for you every day, even though we lost touch for a few years. You are constantly in my thoughts and I hope that you are strong in this next step of your journey together.

    Much Love,

    Lori Samazin

  18. David, Mary and Bradley,

    May God bless you each and provide each of you comfort, love and warmth as you take this next step. David you have been an incredible inspiration to so many people and to myself. I have read each of your blog entries from the beginning to the end and you have left a legacy with your charitable foundation. God is waiting for you with open arms. He always had a plan for you and you carried it our better than He probably expected. May He hold you in His arms for eternity. My continued prayers as always. God bless.

  20. Many times we have looked to David’s example as my husband has battled advanced PC. David is a true warrior, and Mary and Bradley, you have been by his side every step of the way. Sending prayers for comfort and continued strength.

    Your friend,
    Sharon

  21. I have thought of you and prayed for you often. I hope you find the peace you so richly deserve and realize how deeply you have touched others. All my best to you, Mary and Brad.

    Bob in Belton

  22. David and Mary,
    I thought of you David today on my daily run. You have been such an inspiration and have made such a difference for prostate cancer. Your strength and dedication to fighting this disease is incredible. Praying for your continued comfort. Much love and prayers.
    Jenny Fisher

  24. David and Mary, Your “news” is so devastating. I had so looked forward to another meeting with you when I am in Olathe for Christmas.
    Your courage and willingness to endure anything for David’s treatments, have been an inspiration to all of us on the HRPCa network.
    I am still planning to see you at Christmas time.
    NEVER,NEVER, NEVER GIVE UP.
    BRUCE lAUMEISTER

  25. David and Mary,

    thank you for everything you have done for us all. The legacy of your words and deeds will outlast us all.

    Today the hospital told me that I had a fractured pelvis and they were going to admit me immediately as it could collapse at any moment.

    I told them that I had had the pain for some months so it was hardly likely to collapse in the next 24 hours – that I would come in tomorrow as I needed to do some things at home this afternoon.

    A year ago I would never have argued. You taught me to take control of this desease and not let it control and dictate my life – otherwise what is a life worth?

    As you come to the end of the war take comfort that it was a war fought well. A life lived despite the cancer and enrichment and courage given to countles others.

    God bless you both (and David I’ll see you soon hopefully in the arms of our heavenly Father)

    Love and Prayers from across the pond,

    Melvyn

  26. David,
    Your friends from coffee have you in our prayers! You are making a difference in so many people’s lives! God bless.
    Mark

  27. Aw shucks. Not David. NOT David. I am deeply saddened to hear of the news today. Both David and Mary, their kids, their KC community have been sensei and warrior to the many of us and our families impacted by this disease. David has always been available to me by email or phone as I’ve walked my own advanced aggressive young man disease challenge. Generous, upbeat, prompt, caring. I pray for peace, for true healing, for spiritual rewards beyond our imagining to my deserving Brother. It certainly is my hope that David find restoration to a wonderful place in THIS world. It’s not my call for me, for him, for you. Love you Brother. Let go, Let God.

  28. David and Mary,

    I wish you both peace … I saw my parents go through this … David’s blog was always a source of inspiration for our family …

    Eric Bur

  29. David and Mary,

    I hope the love that has guided you on this journey keeps you strong during this next phase. You have fought the good fight and you have educated all of us in that process.

    With gratitude,
    A fellow traveler

  30. Mary, I do pray for comfort for David and that your family may enjoy many more days together. I’m sure that you are thankful to God for every one of them. I pray too for God to give you strength and His peace that passes all understanding. I have so much appreciated all that David has done, especially this record of his journey. My husband is on the same journey. God bless you all.
    Heather from Kansas

  32. David,
    Thank you for everything. Love is the most important thing in the world and you have given so much. I wish there was something I could do for you.

    I hope you know how special you are. You have helped me more than I can put in words. I’ve always looked forward to your blogs. You are kind of like the superman of prostate cancer. I mean you’ve been so strong during the clinical trials and treatments but mostly for your wonderful attitude, drive and determination to fight which is such an inspiration.

    I’m typing this as I sit next to my husband in the hospital. He has liver mets so I don’t know what the next step will be but I won’t give up hope.

    I just wanted to let you know I love you.

  34. Just read Ken Frank’s post of Dave’s passing today on the KCFDC forum. I’m all torn up inside. And then I goggled Dave’s fight n I found this blog. It is giving me strength to read through. I’m glad I met him at the FLHW disc golf tourney. We talked at length. I wore his band since and will continue to wear it for the rest of my life. I will play a round of disc golf tomorrow, dedicate my next disc golf tourney, DD Dirty Dozen Finale in Pawhuska, OK, n sponsor him in his memory. Dave has moved on but he will not be forgotten here on Earth. I will make sure of that Mary n Brad. Prayers of strength to see you and your loved ones through this difficult time.

  35. Dear David and Mary,

    My husband was diagnosed around the same time as David. I have followed your blog since its beginning. Your amazing energy and determination to move forward makes us all better people by your example.

    I send blessing of love, strength, comfort and peace.

    Paula Winans
    Tampa, Florida