Post Surgical Scans and Consultations

Good evening to all of you amazing and extraordinary people. I hope and pray your day is full of happiness, and, no matter what, you were able to see the beauty that surrounds you in life. I hope you take the time wherever you are during the day to relax, take a deep breath, and think about yourself. Take a moment to appreciate you, all that you have accomplished in life, all that has been given to you, and all that you have to look forward to. Life moves fast. Time does not stop for any of us. It is us who have to slow down. It is us who have the amazing ability to appreciate life and take it all in. You made it through yesterday. What ever problems were present yesterday may still be there today and tomorrow, but you can only live one day at time. Take a second and be proud. Be happy you made it through yesterday, woke up today, and are able to live. Problems are going to be there, and whether it is self inflicted or unprepared for makes no difference. The only thing that makes any bit of a difference is how you face it; how you learn from it; how you conquer it; and how you allow others to learn from your life. You all have amazing life’s; trust me. I may not communicate much, but I follow every single one of you as you follow me. I feel it is only fair because I consider you family. Please understand happiness can happen, no matter what, if you trust in yourself and trust in God.

Once again, these last two days have been grueling, emotional, exhausting, and stressful; as they have always been and always will be. I was scared. I have been off of chemo for two months, my body is highly inflamed due to a major surgery, and I recently found a subcutaneous lump near my groin. My emotions had gotten the best of me and fear took over. I never lost hope, but I was convinced the results would not be in our favor. I have lived so much this past year.

April 4 marks one year since my recurrence. One year since my life changed forever regardless of the outcome in the future. My life has forever changed, and, to be honest, it has changed for the better. Treatments are rough; side effects, decisions, and consultations are exhausting and brutal. However, my life is purely beautiful. I have met so many angels throughout this journey. I have learned so much about what is important, what is most definitely not important, and how to use such an awful situation for the betterment of those affected with the same disease. All of you are what makes this journey amazing; your stories, triumphs, setbacks, smiles, love, and prayers carry us no matter what. I am forever blessed with the gift of your love and friendship. I forever thankful to God for showing me the way; for showing me how to trust in Him and each other; how to love, respect, and help anybody and every body. I have learned as much from all of you as you seem to have learned from me.

With that said, it seems God is continuing to answer our relentless prayers. It seems as if surgery was an excellent decision, and He has blessed me with a body which is so very resistant to change and compensates/heals so very well. First of all, angiosarcoma is not currently “curable” in the sense that most of you are use to in reference to cancer. There are people many years out from angiosarcoma who still get scans. A phrase that is very near and dear to those of us diagnosed with this disease is “no evidence of disease” or NED. NED is our favorite and most treasured acronym.

With that said, the CT scans came back with that exact phrase. As of now, I have NO EVIDENCE OF DISEASE!! What an amazing relief. Second, of course, my journey always comes with a caveat. We all know what the pathology revealed within the pleural lining. At some point, it tested positive. However, this does not change the excellent news, nor does it change what we had planned on doing after surgery and healing. Lastly, as far as the CT scans go, the lump I felt was insignificant; meaning Dr. Ravi was not in the least bit worried about it. He is almost positive it is just some sort of fat or muscle build up; especially do to its location. What a relief! I have never been so excited and relieved to read such a report. I can not begin to describe how amazing I feel right now. Actually, with as much as I share, I do believe you understand how amazing this feels; I believe you understand to your very core which is why I love sharing my life. We share everything, including emotions. I thank you for this. Here is a copy of my blood work, CT of the chest, and CT of the abdomen and pelvis. Also, here is Dr. Ravi’s clinical notes from today (as you read it, he mentions many areas of possible disease – lung, lymph nodes, 12th rib, pleura. The lung and lymph nodes are no longer there. We know about the pleura and the pathology discrepancy. The 12th rib is of no concern, but he places it in the notes so we can keep an eye on it. The bone cyst has been there since at least 2009. No need for any worries.)

As far as recovery, I am a very unique case. With that said, all of the techs, nurses, and a few doctors wanted to see me, my recovery, and my incision. They wanted to see my scans. In the words of Dr. Swisher, the surgery was text book and the recovery is going beautifully. He is, by far, the best surgeon I have ever had the privilege of meeting. When your surgeon tells me to please keep in touch, stop by when you are in town, and that we are always in his thoughts and prayers, it tells you a lot about his character and professionalism. It tells me I am more than a statistic, more than just a patient. He lets me know how much he cares and how intent he is in wishing us the very best. Lastly, he cleared me to begin systemic therapy as soon as possible. This is also excellent news! Also, here are some extra pictures of my resected lung that Dr. Swisher and Susan were able to track down. God is definitely taking care of us.

As for my laryngoscopy, we originally had it scheduled for tomorrow morning at 730am. We were done with all of our other appointments today by 11am, and we really wanted to get home today if at all possible. We decided to go and ask to see if they could fit us in for my scope and consultation for my voice. When we arrived, we found out the doctor only has clinic on Monday, Wednesday, and Friday. We thought that was the end of it, but the charge nurse for the entire devision was working today. He called the doctor, and she said she would come in on her day off to get us in today. Amazing! When we met her, she was just as nice and wonderful as we had thought. She was more than happy to help us out and get us home to our boys and our house.

Dr. Hutchinson performed the scope procedure and within 10 minutes we were discussing the results. As imagined, my left vocal cord is mostly paralyzed. Andrea and I watched the whole procedure as it occurred. It was fascinating seeing my vocal cords, airway, and throat on the screen. It was amazing to see first hand what was wrong. It is believed when I had my pneumonectomy, the nerves that control my vocal cords were disturbed in some way but not severed. For reference, your nerve for your vocal cords travel from your brain, down to the middle of your chest, and loops back up to your vocal cords. With this said, you can envision how surgery could disrupt them. In addition, the left vocal cord does not connect with the right, creating about a 1-2mm slit which allows air out (this causes me to have to take a break to breath within a long sentence) and causes my voice to sound like it does. Dr. Hutchinson strongly believes this is temporary and will resolve on its own. However, when we return in 8 weeks, we can have an outpatient procedure done in which a shot is injected directly into my left vocal cord. This shot is collagen based (similar to collagen injections for lips and face). The purpose is to increase the size and push the left vocal cord towards the right causing the airway to close completely. This does nothing to restore functionality of the left vocal cord, but it will help in restoring my voice and the air leak that is currently present. We anticipate this problem to be resolved by the time I return, but we will schedule a check-up regardless.

Moving forward, I will begin my next regimen of chemotherapy this upcoming Monday. I will be getting a drug called paclitaxol. This chemo will be administered on a weekly basis for 8 weeks. At the end of this 8 week period, we will return to Houston for my re-staging scan and consultation. According to Dr. Ravi, this chemo is tolerated very well and angiosarcoma is very responsive to this drug. These are both excellent bits of information!

Thank you for being in our life. Thank you for your unwavering support; your pure love; your dedication, generosity, and prayers for my family. You will never know how important each and every one of you are to me, but you will always be close to my heart. You will always be on my mind and welcomed in our life. I will never forget how much you have done for us. I will never take your affection and selflessness for granted. I cherish your friendship and devotion to us. We love you; from the bottom of our hearts and the depths of our souls, we love you. Thank you for walking with us, hand in hand, through the dark, into the light, and forward through it all. Thank you. Have a blessed and beautiful evening everyone.

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26 Responses to Post Surgical Scans and Consultations

  1. Donna Holmes says:

    To God be the Glory! Great things he has done and continues to do. I knew you could and I know you can! My love to you and Andrea!

  2. Victoria says:

    I could say, “It’s about time you posted!” Ever since you texted Dad we’ve been constantly checking your site waiting for you to spill your news…but right now I’m speechless. The only word my brain can comprehend right now is “HALLELUYAH!!!!!!!!!” Wow…I’m so in awe of what God has done, is doing, and will do in the future!!!! His ways are so much higher than ours (Isaiah 55:8-13)!!!!

    I love you SOOO much and know that I’m REJOICING with you- I don’t think I could have asked for a better ending to any day!!!! <3

  3. Christine says:

    So happy for your good news…..Praise God! So appreciate your kind words and encouragement that you always offer us all. It has been especially meaningful to me lately, as I have had unexpected health issues. May God continue to bless you and your family, and heal you!

  4. james dean says:

    Ryan, yet another GREAT post of information and inspiration for all of us out here. Sure did like the positive tone that you have show us all. The reports were just what the doctors ordered. Much love comes your way, as you continue to send our way. Thoughts and Prayers to you all during this Holy Week.

  5. Joanna says:

    Such wonderful news!! What an amazing person you are, and how blessed you are to have these medical personnel that appreciate you and want to help you. Prayers will continue for you and your family. So grateful for your writings that are so inspiring.

  6. Townsleys says:

    What awesome news!!!! So good to hear!! Halleluyah!!!

  7. ROBERTA EVANS (Bobbie) says:

    I am so happy for you and your family. God is good, he loves us all. We all have a time to live and a time to die. He has something important for you to do or accomplish before you leave this world. I believe this with all my heart. I am 70 years old and survived 2 very bad wrecks, breast cancer, and Angiosarcoma. I have survived Angiosarcoma for seven years, through chemo, chest wall reconstruction plus 3 other surgeries, and now I am on Votrient. I have been Ned this time for 1 year and 6 months. I wish you and your beautiful family well

  8. Lonna Kilpatrick (Logans mom) says:

    Ryan, your positivity and love and soulful spirit inspire me. And my words of wisdom to you are Logans favorite verse “I can do all things through him who strengthens me” Phil 4:19.

    I was once taken into a dark conference room and told I had a less than a15% a chance of my son surviving a recurrence of Ewing sarcoma. I cried a river. But 2 years later he is steong and getting his spine repaired. Funny thing doctors dont get to decide how long you have. God decides that. He knows the plan he has for you

  9. Lonna Kilpatrick (Logans mom) says:

    Its not our plan its his plan and its perfect and beautiful. I will keep praying that the world gets to see that amazing beautiful plan through you. And thank you for helpinf us all see that even in the dark hard times there is love and beauty and gods grace. God bless you and your family.

  10. Tony says:

    NED!!! NED!!!!!!!!!

  11. Alli says:

    So overjoyed to hear the great news! Hoping you are resting well tonight-what a fight! Great work superstar (and family)! 😉

  12. Matt willerick says:

    Ryanmang!!!! Beautiful news and you have me crying at work. We cannot wait to see you and your beautiful family this summer when we are home and will continue to pray for you every day. So soooo happy for you and Andrea and those beautiful boys!!!

  13. Sarah says:

    YAHOOOOO!! I literally gasped when I read the results of your scan and squealed with excitement!! Praise God, Praise GOD!! Chris and I will continue to pray for you and your family! We love you!! #TeamHumphrey

  14. Joy Sullivan says:

    I think you should walk around with a neon shirt sporting “NED”! I know, a little cheesy, but awesome none the less!

  15. The Briones Family says:

    Praise the Lord for the good news!! NED – beautiful words!! =)

  16. Rachel Peters says:

    Bowing my head to the Lord, thanking him repeatedly while crying tears of joy!! This is a testament that God performs miracles!! I’ve read up on this disease, I read every blog you post about it and most people do not come this far… you have NED!!! THANK YOU JESUS!! THANK YOU JESUS

  17. Grandpa Humphrey and Grandma Humphrey says:

    Ryan and Andrea, what great news, you continue to amaze us all.
    I can’t put in words how happy we are with the latest news.
    You are an amazint Grandson, I am so proud of you.
    God’s blessings to your family.
    Love
    Grandma and Grandpa Hump

  18. Electra Nicolaou says:

    Praise the Lord!!!! God will never let you down.
    Ryan, you are an inspiration to all of us. Keep up the good work. You and the family are in my prayers. Love you all very much!!!

  19. Katie Willerick says:

    All great news!! What a happy flight home that must have been! :)

  20. Katie (Brophy) Kiter says:

    Holy crap!! This is WONDERFUL news!!

  21. Cindy says:

    Ryan, this is the second best thing I’ve heard today, but it is a very close second, the first being, that I heard the sound of my first grandchild’s heartbeat for the first time. God is so great, all praise to him for everything. Thank you for showing us how truly amazing he is in our lives.

  22. Mary Manning says:

    Keep up the fight. Keeping you and your family in my thought and prayers. Glad to hear that you have “NED”.

  23. Grandma & Grandpa Davis says:

    Praise God! What wonderful news. We are so happy to hear the NED! Ryan you are doing a wonderful job of giving us all the information and reports. We are learning a lot about the tests and reports and what all this means. We are so happy for you and Andrea and your boys.
    You are in our prayers daily.
    We love you all!

  24. Deb Manning says:

    Thanks and Glory to God! You and your family have been such an awesome inspiration to so many of us! I continue to look forward to your posts and the way God is working through you to reach so many of us. Your abundant gratitude and faith are astounding. I know that you have you have changed my heart so many times over. When I read your posts, my outlook on life and love are transformed. I see so many blessings more clearly, and my troubles become inconsequential. Thank you so much for sharing your journey. NED-what a blessing!

  25. Thank you for sharing. I am so glad that the group has been so helpful for you. I agree strongly that this does change peoples lives and outlook on life. Please continue to stay proactive in your health choices. I will continue to keep all those on the Angiosarcoma Page dealing with angiosarcoma or a care taker for someone with angio in my prayers.
    Precious

  26. Renee Levasseur says:

    I read your posts and I just want to jump up and down!!! Let me just say you and your sister, Victoria, sure do know how to write. I’m don’t do well expressing myself. I am soooo happy for all the good news in this post. WOW….all I can say is…you are a very strong person and God is the Great Physician. He knows the plans He has for you. You are the one inspiring so many people and making them realize just what exactly is important in life. You will never know how much you have helped me. I hope one day your Dad, Lisa, Victoria & Kyle will bring you and your wonderful family out to see me. I would so love to meet you.

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