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 (firstname.lastname@example.org) 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.