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.