Good evening everyone! It has been a very long, stressful and exhausting couple of weeks for us all. However, even in the darkest of times, we were able to smile and enjoy each other. It is all relative, and you can always make the best of any situation. I hope and pray you live your days the way they are meant to be lived – with passion, excitement, forgiveness and love. I hope you cherish what God has given you, and spread your cheer and zest for all that is good to everyone you surround yourself with. Bad news will come. It’s a part of life, but you can pull through it. You can grow beyond anything negative and live your life in any way you want using whatever time you have left. I choose to live that precious time smiling, watching my family grow, meeting new people, and enjoying every blessing that God has granted me, and there are many.
As for us, we are doing very well physically. I am recovering as well as I can with very little pain. I have an amazing wife who does her very best to help take care of me. She deserves the world, and yet, she still gives her world to others. I could not do this without her by my side. She has endured a tremendous amount, but she is the strongest person I know. We could all learn a lot about life and what really matters from her.
My incision is healing very nicely. My O2 level is doing very well at 99-100% saturation on a daily basis (I have a pulse oximeter). My heart rate is stable around 90 BPM at rest, and my blood pressure is consistently around 120/60. As far as the surgery, I would say I am doing very well. However, this blog is not about my week in Houston. I am still waiting for some additional information to post, in length, my experience before and after surgery, along with everything I have learned. This blog is about the pathology of the resected tissue and tumor.
I will keep this short as we are still absorbing what we have learned today. We received a phone call from my oncologist, Dr. Ravi, around 430pm today (Saturday). For the record, it is never a good thing when your doctor calls on a Saturday. Unfortunately, it was a necessary phone call and one I was waiting for regardless of the information provided. I am not a wait around sort of patient. I will bug my doctors until I get the results. Sometimes it’s good news, but with this journey, most of the time it’s bad or indifferent.
We are in this together, thick or thin. With that said, it does not appear as if the surgeon was able to obtain clear margins. From what they can tell, the mediastinal margin (margins are the ultimate edge of the resected tissue – in this particular case, we are referring to the middle of the chest) is testing positive for disease. To make matters worse, and which took us completely by surprise, is the pleura tested positive for disease. These findings are not very good at all. The pleura is the double layered lining of your lung (one lines the lung itself while the other lines your chest well – it is filled with fluid in between). If any part of the pleura tests positive, it is assumed it is throughout the whole tissue.
What now? We do not know. Unfortunately, I have to heal first before we can do any treatment.
What does this mean? We also do not know, but what we do know is it does not change what we were going to do as far as treatment. We knew the risks; we knew the odds were highly against me. I still believe we made the right decision.
After surgery, we were always planning on continuing with chemo and radiation. It was never a question of if, but when we would start. However, I was strongly hoping and praying that all my tissue/margins would test negative, and any additional treatment would just be chasing after unknown enemies yet to be seen. I was praying I would not be faced with the disease so soon after surgery. To say I am devastated right now is an understatement.
Fortunately, setbacks and horrible news is no stranger to us. I say fortunately because we can handle it. We will cry tonight, and probably tomorrow. I am crying right now. However, we will pick ourselves up, and move forward. What other choice to we have? I am not dead yet, and I still have the strength to live my life. Am I scared? Absolutely. There is no question about that.
I have no idea what this does for my future. I have no idea what to prepare for as far as curative, palliative, or maintenance care and treatments. Do I start preparing myself? Do I start preparing my family? All I know is that the disease is still in me, and we need to keep fighting; we must keep fighting. We all know it’s a very long and difficult road, and I am fighting against enormous odds. It is not unfamiliar territory for any of us, but it still hurts. It still angers and mystifies me from the very moment I heard such horrible news. Why me, again?
I am doing everything I possibly can to stay alive for my family; to have my boys know their father; to have my wife hold my hand when we are old, wrinkly, and gray. You have no idea how hard it is to face my wife and sons every day, every morning, and every night thinking how my life as a human has failed them and let them down. It is painstakingly horrifying knowing the horrors my young wife and very young sons might be forced to go through and to have them endure such pain in the loss of someone at such a young age. They do not deserve this. They deserve to live in the comfort and love of a home where we can all believe we will be a family for a very long time, but this is real life. It is true that nothing is guaranteed, but I hope you do not think about death on a daily basis as I do. I hope and pray you do not have the daily struggle to push forward and live! We all have so much going for us, no matter the situation.
You cannot prepare someone for this. We will trust in God’s decisions, and search for his reasoning behind it all. He got us this far. He will get us much farther.
Please continue to keep my family in your prayers. We need it now as we always have needed it. We could not do this without you. I am so sorry for the very bad news. As you were doing, I was also praying for nothing but good news. We will move forward. Our prayers are answered in God’s time. I am satisfied and content knowing that we have done everything humanly possible, and we are using all of God’s tools to get to where we are today.
This is just one step in our road to a long life. We were always told growing up that life isn’t easy or fair. This is most certainly true, but what you do with adversity truly allows you to express who you are and how you live your life. Do you falter? Or do you look to God and find a way out, or at least a way to smile through it? I choose the latter. My family deserves that much from me, but I will give them much more as long as I am able.
I love you all, which will never change. Please keep my family close to your hearts and in your prayers. We need you now more than ever. We love you.