Our Journey Moving Forward

Good evening everyone! I hope today was exciting and inspiring for you all. I hope you had the opportunity to relax, smile, laugh, and reflect. Life is not a game, nor is it something to be taken for granted or mocked. It is a journey with bumps, curves, straight roads, and hills. It is a constant and ever changing experience full of decisions, both good and bad. You learn to be strong for yourself and for those you care about. You learn to never give up no matter the cost and do everything possible to enjoy what time you have been given. You have all taught me the power of dedication and love; the meaningfulness of sharing ones life with others; and the importance of never giving up. Thank you.

Some may be upset for me apologizing, but I am truly sorry to have this writing come so late in the day. I know you don’t mind, but it is a journey for all of us. I try to convey as quickly and accurately as possible the emotions, decisions, and overall life changing moments we encounter. I am not, nor have I ever been, doing this alone.

Truth be told, it is my mind and body experiencing the drugs, toxicity, decisions and constant bombardment of consultations and tests, but the overall experience is much more than that. There is an aspect to it all much more powerful than my body getting through each round; much more important than figuring out which regimen to do next or how much longer do I have to live. It is all about finding yourself and each other through it all. It’s about learning to live with what God has given you, both good and bad, and learning to not just get by in life but to share, love, learn, reflect, and give with all your heart and soul.

It’s about making this world a better place, and, if it takes me going through this, sharing my experience, and absolutely enjoying life and all it has to offer, I will gladly do this for you with a smile. It won’t always be easy, but it will be worth it if we can provide a loving and caring world for each other. I know I write a lot before I tell you about the day of consultations, but I want you all to realize what we are doing here is more than just results coupled with good or bad news followed by exhausting consultations. I am not belittling these moments, but the results are out of our hands. The outcome is out of our hands. God has a plan and all we can do is take each step in stride. We have to pick up the pieces and move forward. Life and time do not wait around. Just remember to experience all of life from the moment you wake up to the moment you fall asleep.

Today was exhausting. You get a lot of information in a very short length of time. You get some of the hardest and toughest decisions you will ever have to make. First and foremost, it is important to acknowledge the fact the disease has not spread. From the scans, there are no new spots. The existing tumors did not change from the last scan, but they did not grow which is wonderful. We are at a crossroads now and the toughest decisions are now to be made. Unfortunately, there is no right or wrong answer, and the decision is mine to make.

It is unfortunate enough to have cancer; then to have a rare cancer; then to have a difficult and challenging case. The nature of angiosarcoma and the location of my tumors are the main issues here. We are concerned about the very high likelihood of the disease returning and/or spreading regardless of treatment modality chosen. We are also concerned about the risk versus benefit of surgery. The surgery in question is a completion pneumonectomy; the complete removal of my left lung. It is a very invasive, aggressive, and risky surgery. The difficult concept is the fact I am losing a completely healthy lung. The disease is not in the lung, but in an area where only complete removal of my lung would give the opportunity for complete resection and clear margins. The risk of not making it off the operating table is high. The risks of complications are many. How do you make such a decision? In my mind, without removal of the tumor, my prognosis is grim. However, the odds of recurrence are very high also regardless of pneumonectomy. The right decision will only be known in the end.

Many questions have arisen and the list is getting longer by the minute. Will I survive longer with or without the surgery? Will the surgery have any benefit? Will I die in the same time frame regardless? Will my quality of life suffer substantially limiting my ability to enjoy my family? Is the disease elsewhere hiding microscopically? Will the angiosarcoma return regardless? If we delay surgery, will we lose the only opportunity to have the pneumonectomy? The answer is not black and white or making the right or wrong decision. It isn’t about right or wrong, but about gathering all of the information to formulate the best possible scenario with the most promising outcome.

If we decide to opt out of surgery because we deem the risks outweigh the benefit, we are left with proton therapy and additional chemotherapy. However, the fact remains with these modalities the known tumors still remain. Proton therapy may or may not work on my tumors and there is no guarantee of completely radiating the disease. Chemo, if the tumors respond again, will only work for a short duration of time because of the durability and resistance acquiring capabilities of the disease. However, with radiation and chemotherapy I am sparing my lung and possible quality of life. This is important to consider in the equation due to the fact of the high probability of recurrence regardless of surgery. The fact remains I want to do everything to the fullest extent possible and leave nothing on the table. I want to exhaust all options, all scenarios, and all possibilities of treatment. Unfortunately, it is either surgery or radiation on the primary tumors. Which is the most beneficial route? We will never know which route is best, but the decision has to be made. Furthermore, it has to made soon.

Now, where do we stand with all of this? First, it’s not a decision I will make on my own. It is a group decision, and we will look at every possible scenario, every outcome, and all the facts with each treatment modality. I pray to God, more than ever, for his guidance on this decision. I pray He helps me understand the pros and cons of each; that He guides our minds and our hearts towards His plan. I have faith the correct decision will be made with all that is available in today’s technology.

We have in no way made a decision yet, but, due to the nature of arranging such a surgical procedure, we have my surgery scheduled for February 27 at MD Anderson with Dr. Swisher. Should we decide surgery is the best option, the operation will take approximately 3 hours. Dr. Swisher went over the operation, how it is performed, and what to expect. He explained that he strongly believes he can get clear margins and will be able to resect both the subcarinal and left hilar nodal tumors. I would be in the hospital for approximately 7 days afterward, and we will probably extend that to a few days after my discharge since Andrea and the boys will be with me.

My concerns are many. For starters, I will not be undergoing any systemic chemo treatment for about 2 months because of the surgery. Unfortunately, it is a necessary precaution with surgery. Nonetheless, the possibility of metastasis during those 2 months worry me to no end. Next, the complications, once again, are numerous both during the operation, after the operation, and later down the road. If you are curious, just do an internet search of complete pneumonectomy. I have no issues listing them all here, but it would make this longer than it already is!

Andrea and I have not spoken in depth about it yet, but we are leaning towards surgery. If there is even a small chance of benefiting, we always said we would take that route. This may be the only opportunity for complete surgical resection of the existing tumors, and I don’t think we should pass such an opportunity. Furthermore, Dr. Swisher instilled some confidence in us about the procedure and his ability to resect the tumors. I am young and healthy otherwise. I have my family and all of you to consider. I still have goals, dreams, and ambitions. I have a life to live.

In summary, the positives God has granted us today are plentiful. The disease has not spread nor has the existing disease increased in size. Surgery has become an option due to the amount of tumor shrinkage. The subcarinal and left hilar nodal tumors can both be resected. There are numerous chemo treatments available still. If the decision is to have surgery, proton therapy is still an option should the disease recur elsewhere. Our insurance has approved the surgery as in-network already. I am young and healthy otherwise. I have the best support group in the world. We have much to be thankful for, and I thank God for that every day. We will make the right decision together. We will fight with all we have been given.

If you have an input, I urge you to make it known to me. If you think it is a minuscule point, please do not. This is a group effort. Once a decision is made, there is no going the other way. All questions and concerns must be brought forth; all avenues considered; and all options, no matter how trivial or small you think it may be, must be brought up. I have always said we are in this together, and now, more than ever, this holds true. I respect and welcome all input, all suggestions, and all concerns. If you need clarification on anything, PLEASE let me know. Feel free to post on this website, email me (r0humph1@gmail.com) or call/text (517 242 8146) with your input. I am not too busy, too exhausted, or too overwhelmed to help you understand any of this. Do not hesitate to let me know. We are family. We are fighting this together.

Thank you for your patience in awaiting this blog, and thank you for always being there for us. Life is what you make of it, and this is no different. We all have decisions to make, but we make them with the best of our knowledge and understanding. We move forward. Tomorrow and yesterday are out of our hands, but today is ours to experience and enjoy. Worrying will not change the outcome, but it will consume your thoughts and ability to live. Have your moment when life throws a curveball, but just a moment. Allow yourself to get up, push forward, and fight whatever is in your way from enjoying yourself. Life is too short. Your reaction and reflection upon life’s experiences define who you are and how you live your life. Make it count. Have a wonderful evening everyone! I truly and deeply love you all from the very deepest part of my heart.

This entry was posted in Treatment Progress, Uncategorized. Bookmark the permalink.

8 Responses to Our Journey Moving Forward

  1. Kathy says:

    Is there any possible way to remove the lung, then the tumor and then trim plant your lung? Not at all sure it is even possible, but worth the thought. Praying for all of you daily.

  2. The Briones Family says:

    Listen to advice and accept instruction and in the end you will be wise. Many are the plans in a man’s heart, but it is the LORD’s purpose that prevails. — Proverbs 19:21

    Prayer:

    Holy God and righteous Father, please bless Ryan as he seeks to discern your will in his decisions today. We recognize that each breath that we take is a gift and that each success is because of your grace. Please use Ryan to your glory and help him find your path for his life. In the name of Jesus I pray. Amen.

  3. Donna Holmes says:

    Ryan:
    I am so glad that you made it home safely. Reading your blog just does something to me. Your writing in and of itself is unlike anything I’ve ever read before. First, thank you so very much for keeping us all updated and including us in your life. God knew us before we were ever born. He also knows the number of days we have on this earth. I, being a seasoned nurse (nice term for old), have seen life begin and life end. I remember when I worked at Texas Children’s in Houston, Texas, my first job was on the Hematology/Oncology Unit. Wow, what an opportunity that was for me. To this day, I will never forget the first patient I had nor his family. Nurses are taught to not get close to the patient and their families. Well, that’s a joke. All this to say, I really believe in my heart, with all the chemo, radiation, surgery, etc., that what really conquers someone with cancer or any other illness, is the mental attitude that we all see in you. Do you need to research everything there is? Yes! Does this decision that you are dealing with now need to be made by you and Andrea? Yes! Is your faith strong? Yes! Do Landon and Logan need you? Yes! Do the research, read your comments on this wonderful blog, spend endless amounts of time with Andrea, Landon, Logan, family and friends and YOU MUST KEEP A POSITIVE ATTITUDE! Know one knows what lies ahead except God. And, he is walking this “journey” with you, right by your side every step of the way. Through chemo or radiation or proton therapy or surgery, he is right there with you. Don’t be afraid to listen to his Still Small Voice. I know you can, I know you can. I love you guys and expect to see you in December at a very special graduation. My friend, Dr. June Youatt, whom you met is getting married sometime this summer. We will definitely get together then. My love to you, Andrea and the boys!

  4. Stacy Ann Sipes says:

    Ryan, Andrea, Landon, and Logan:
    Know that you all are loved by so many. Any decisions that you make over the next few weeks will be supported by all of us around you. My family and I are sending prayers your way, not only for healing, but also for clarity as you move on to the next phase.
    Thank you for blessing us with your presence in our lives and for continuing to find the positive in every situation. Your entire family is an inspiration to us all.

    Much love to each and every one of you!

  5. So hard says:

    Sometimes its seems as if you are damned if you do and damned it you don’t. I know this feeling as cancer has invaded my family. In one case…..a close family memeber made it not about prolonging his life (which I am not sure if that can REALLY ever been true) but since neither option was great he went the route of what studies and test can I do to help others in the future. Which route would help research and maybe protect my childern. I am not sure if I myself could make that choice but its one to be considered. I wish you and your beautiful family the best.

  6. mary stuve says:

    may god help you and your family make this tough decision!
    I found you thru my niece, Amanda juip.
    I have recently benn diagnosed with stage 4 esophageal cancer. I have completed all the radiation therapy I can ever have (I think i glow in the dark now)! also completed two rounds of chemotherapy. next week I will have a CT scan and another endoscopic ultra sound to learn whether I am one of the 30% whose tumors respond to the treatment. if I am, I face a similar decision to yours, a radical surgery to remove my esophagus and part of my stomach… risky and with no guarantees.
    I so admire your positive attitude, ryan and your zest for life.
    although I am much older than you are and face different family decisions, I am hoping to maintain that same sense of wonder and joy at the gift of whatever life remains to me…. I have already exceeded the doctor’s first estimates of 2 to 3 months!
    I pray for the strength to live with grace…. and I pray that for you, too, whatever decision you make, and whatever the consequences that ensue.

    thank you for sharing your wonderful spirit with all of us, I will keep you and your family close in my heart and prayers,

    mary

  7. philip kopiczko says:

    ” God Speed Ryan ” enough said …………….

  8. Larry Briggs says:

    Ryan,
    My prayers are with you. It sounds like you have a deep faith. That is the most important thing.
    I read you story on the AA flight I just took to DFW.

    I’m writing to let you know I am praying for you that God will direct you and that you will savor life as you certainly seem to. You wife must be amazing.

    Ten years ago my first wife battled angiosarcoma of the liver. It was discovered late and there was nothing they could do. We did not have choices. It is a very rare cancer and it sounds like you have smart people around you.
    God Bless you on your journey.
    Larry

Leave a Reply

Your email address will not be published. Required fields are marked *