Living Life; Truly By The Moment

Good morning and a very happy Saturday to all of you! Life has certainly been on the up for us around here. I hope and pray your lives are the same. I hope you are able to experience what life truly has to offer and pay it forward to your loved ones, your neighbors, and strangers you cross each and every day. The world is a better place because you are in it and never forget that. Never ever forget that you will never be alone. You will never fight alone or live life alone. There is always someone there for you, including myself.

We all have a purpose. We all have someone we can make smile and can share our deepest thoughts with. Changing one person’s day is cause enough for living; spreading this sort of love, affection, and care is reason enough to be happy with everything you do. Life is undoubtedly too short no matter how you look at it. There never seems to be enough time to do anything, but I can assure you there is. You just need to figure out how to slow life down. We are all products of our own creation on this journey. We make each day what we want it to be. We will suffer. We will be stressed, hurt, and lonely at times. These are the growth stages; these are the parts in your life where you gain strength, drive, and perseverance because you will need these traits again. However, no matter the circumstances, you can always find a place to be at peace. God grants us this sense of well-being even in the darkest of times. I promise you I have seen some of the most horrific tragedies and stories, but the people directly involved can see more clearly, have a deeper respect for life, and can move forward with love, respect, and happiness. It is the memories they hold on to that give them the strength and courage to move forward. Please, I beg of you, do not forget to make lasting memories. Take the time to share your lives; by this I mean deeply and unequivocally divulge what makes you, you. You will then know what it feels like to truly live in the moment.

For us, living each and every moment is what gets us through. We look forward to each and every day as if it were our last together. It is truly amazing what one scan showing “no evidence of disease” (NED) can do for one’s life. I truly hope you never understand what that phrase means, but hearing it, reading it, and telling it is one of the most remarkable things I have ever had the privilege of witnessing. It means God is answering our prayers. It means our hard work over a very difficult yet inspiring year is paying off. It means I am alive, and, for the time being, I am disease free. Yes, I still have a very tough battle against a very aggressive cancer, and the likelihood of it returning, with a vengeance, is extremely high. And yes, I am still going through intensive chemotherapy for a very long time. And yet, for a moment, for one brief moment in time, we can rejoice in the fight we are fighting.

It is more than just going through treatments. It is more than just going through the daily struggles as a family as we try to cope with our changing landscape called life. It is about everything; all that my family, my support, my loved ones have been through in life. The next scan may very well be devastating, but we have had two months of pure bliss with some amazing things transpiring! In and of itself, that is worth it all! I have never said this before, and I am in no way ready to go, but I could die with peace, dignity and feelings of love and joy that run so very deep this very moment. I am the happiest and most content with life that I have ever been. It is truly amazing what adversity does to one’s life, no matter the situation. We can run, or we can face it head on. I promise you that nobody fights alone; you cannot make it by yourself and you should not have to. It is going to be a lifelong passion of mine to spread awareness and form resolutions for people who think they are in any of life’s struggles alone. I will make sure they are not! It has paid miraculous dividends for my journey, and I would not have it any other way.

As for life lately, it has been truly remarkable. As of this writing, I have completed 17 rounds of chemo. Beginning on round 13, my regimen consists of weekly paclitaxel (taxol) as the sole drug of choice. It is often considered a maintenance regimen, can be used for a very long time, and it is effective against angiosarcoma. These three things are very well received by me! I have been beyond blessed with a life right now that is symptom free, side-effect free, and the ability to go at things as normal as possible.

When you have been accepting people, whom you love very dearly, into your house for the good part of a year, you begin to miss the normal roles that everybody should be able to take. Grandmothers should be grandmothers; mothers should be mothers; aunts should be aunts; cousins should be cousins, and so on and so forth. These all seem like obvious statements, but when a family is struck with a journey such as this, the dynamics all have to change; they must change in order to fight the great fight. There is no other way about it. They all become caregivers; caregivers of myself, of my children, of my wife, and of our lives. They have to make decisions not as the family members the once were, but as the sole caregivers of my very life. It gets hard because this disease is asking so much of so many people. It gives me a sense of susceptibility and helplessness because there is no way I can ever repay people for their love, support and sacrificed time towards my health and well-being. There is no way I can even begin to understand what this has done to their lives. However, for this moment and by God’s good grace, we are winning and charging forward. It is an amazing feeling, especially this last month and a half.

We often take for granted the little things in life. I am not immune to this at all, but I am often reminded because of what we are going through. It has been a blessing being woken up by children early in the morning and being able to take care of them. It has been an incredible feeling being able to carry my baby Logan up the stairs for a nap without getting tired and still be able to play with Landon afterwards. It is truly remarkable being able to go on a three mile walk everyday with my family. I get excited to be able to fix up the house, when something breaks, or when I have to teach Landon or Logan a lesson in life. It means life is happening for us, and it doesn’t involve cancer. Most of all, it is a miracle I can take care of our boys, on my own without assistance, while on chemo and one lung, while Andrea is at work. It’s just us three boys while mommy is away at work, and it fills my heart with such love and joy I could cry every time I think of it. For the time being, my numerous caregivers can be who they are supposed to be in our lives. They can live as if this disease is not present for now.

I have been reacquainted with so many people from my past, and it is truly incredible. It is incredible to see their dreams, their lives, and their goals unfolding before their eyes. It is humbling to hear of others struggles and to know that their reflections on my story and their stories have forever changed their lives. A phrase I hear most often is “I feel horrible it took this disease in your life for us to talk again.” Personally, I could not disagree more with that statement. I am not sorry. Its life and it means you were living it! We cannot possibly remain in contact with everyone in our lives. For one, it would take away from the very message I am trying to convey; live every moment. You would be consumed with trying to keep up with everyone! Personally, we all get caught up with life. I view these situations as “checkpoints” in life. We are given subtle reminders to live slower, calmer, and with more grace. We are given situations, whether our own or through another’s life, to truly appreciate what matters because you cannot take anything with you when you leave this world. For you and me, my journey is such a checkpoint. It’s a reminder, I hope, for both of us to remember what the true meaning of “living life” is. I have learned so much from you, and I can only hope you have learned from me. It has been a wild ride so far, but we have grown so much in love and life through it all.

As this writing is running long already, I want to devote an entire writing to the Angiosarcoma Awareness 5K that happened on May 4. In short, it has changed my life. We are planning next year’s already (May 3, 2014), and have decided to begin and start a nonprofit. We are turning Nobody Fights Alone into a fully registered nonprofit organization. It has been a dream and passion of mine, and we will work to fund angiosarcoma research through grants and monies going directly to Angiosarcoma Awareness, Inc. for their organization to disperse. They have created the wheel, and we in no way want to reinvent it. They are what drive my passion to create this nonprofit. We will also focus on advocacy, awareness, and the notion that nobody will ever fight alone, no matter the ailment or circumstance. I am extremely excited to undertake this amazing opportunity, and it would not have happened if it weren’t for the truly miraculous, inspiring, and uplifting 5K that was nothing short of amazing. I will devote an entire writing to these two things as they are what I want to do.

My schedule going forward is we plan on doing this weekly regimen for at least 4-6 months. This disease is ruthless, tenacious and vengeful, so must we be. I will endure what I have to, but you all make me thrive. We go for scans and consultations every 8 weeks now. My next scan in Houston is on May 22 at 7pm with a follow-up consultation with Dr. Ravi at 930am on May 23. I will also have a follow-up appointment with the Head and Neck Center regarding my vocal cords. We want to evaluate any progress, but we will hold off on getting the collagen shot until at least six months. The tentative date is May 31, but we are trying to get this changed.

Please continue to keep us in your prayers. As a side note, I have been keeping very busy lately because this scan is very stressful for me. In the past, every time my life has been going this well, tragedy has struck. Unfortunately, I cannot avoid the most horrific thoughts of a bad scan and future right now. I have my moments, but keeping busy has kept my mind occupied. Please pray for peace of mind and tranquility.

Thank you for making this past year amazing. Thank you for going hand-in-hand, step-by-step with my family and me. Thank you for supporting us in every single definition of the word. Love, gratitude, and thanks do not give you all justice. Remember to live for the moment. Remember to make your days and your memories count, and to be everlasting. And please remember to take care of each other no matter what. Life is most definitely what you make of it. Let’s make it memorable, and let’s make a difference! I truly love you all so very much. Have a wonderful and amazing day!

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7 Responses to Living Life; Truly By The Moment

  1. Dawn Gardella says:

    Your attitude is amazing and no doubt has been key in the survival of your life, and the survival of your family as well. God is keeping you around for a purpose and it’s clear you take that commission serious. You are an inspiration to many and a testament to God’s goodness and grace.

  2. valerie jenvey says:

    Ryan, I applaud your courageous fight! I encourage you to let go of ALL negative thoughts. God only wants the best health for you. I support you in learning to FEEL your emotions and to reach for the most positive thoughts you can possibly come up with. I woud like to share some teachings with you that have changed my life in an amazing way. The website is free. Its called the teachings of Abraham. The Laws of Attraction. I personally own most of the books and cds and would be happy to share them with you! I live in Castroville. Wayne Dyer is affiliated with a woman from India who had a near death experience with cancer and has written a book about how she came back and cleared ALL of her cancer! I haven’t read it myself, but I am positive you could get a lot from it. Sincerely, Valerie Jenvey

  3. Thank you so much for sharing this! Blessings and Shalom.

  4. Leann says:

    I pray for peace and tranquility for you. You and Andi are at the top of my prayer list.
    May God grant you many years of what you have been able to enjoy in the last month
    and a half with your dear, precious family.

  5. james dean says:

    Ryan, once again I have read a very inspirational post that has sent goose bumps up and down my back. Will read it again sometime today, to see what I missed the first time through. I am not sure that you really realize what you do for all of us out here. Thanks you so very much. Again, I have at times had friends that get to me ask for more about you . You are so GREAT for all of us out here. I have put the up-and-coming dates on my calendar to keep me focused. Continue to stay positive and strong. Thoughts and Prayers. Enjoy that birthday.

  6. Renee Levasseur says:

    Ryan, all I can say is “your posts are helping me greatly”. There are days when I feel like there is way too much for me to handle”. You put my life back in perspective and I realize how Blessed I really am. Thank you for doing God’s work and He has many more plans for you. God’s blessing on you and your family. I pray every night for you and will pray your next scan is also awesome. You are definitely doing the plans that God had in mind for you. God’s Peace.

  7. Rachel Peters says:

    Good Morning Ryan and Family,

    I am so excited to hear that you are starting a non profit organization. At my job on a Friday that falls on a payday we have a “Jean Day” for a cause. Each employee pays $4 to wear jeans and the money goes to a chosen non profit organization/charity. In the past I have asked my HR department about doing a jean day for you to help with your medical bills, flights to specialists, hotel rooms for your family, etc… and I was told the cause had to be a registered organization. Soooooo…. as SOON as you get “Nobody Fights Alone” all set up and registered let me know and I will submit the request to HR. 🙂 Imagine all the proceeds you can collect for research and financial help for the needs of people facing this disease if everyone on your blog submitted a request to their HR?? It would be bigger than we all could have hoped for.

    May God continue to bless you 🙂

    Rachel P

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