Good morning and Happy Monday! As of now, I honestly do not have an excuse for my lack of writing all of you. You have done so much for me, and I sincerely apologize for the lack of posts. I have been doing my very best to keep myself busy during my recovery to pass the time. I hope and pray your lives are as blessed as mine. I consider you all family, and, as such, always have you close to my heart and in our prayers. Nobody deserves to suffer, but if pain and agony should cross your path in life, I encourage you to find the strength to trust God to carry you through; to let people in because you WILL need the help; and to learn, live, laugh, and love no matter the circumstance. Every circumstance in life has a lesson to be learned. Every memory; every moment; every single day of your life is something to be grateful for, to learn from, and to accept as a gift to mold into the most beautiful experience you can ever dream of. Be sure to share your life with others. Let people in and don’t be afraid to cry when you are sad; laugh when you are happy; and love at all times. I promise life is what you make of it no matter what. Each day, each and every second directly in front of you gives you an opportunity to choose one of two courses; look for the good, learn from mistakes, and search for the positive message God is trying to convey OR let anger, frustration, and regret get the best of you. We are here for each other. I am always here for you too. Never forget that.
Houston, looking back, was amazing. My family did everything that I expected them to do. They honored my wishes for Andrea’s birthday. We focused on her, our lives, and happiness and joy. We focused on what life truly is all about and just had an amazing time celebrating THE most important person to me. To see pictures of Andrea’s birthday celebration, please click here. Surgery was on Wednesday, February 27. However, Monday and Tuesday were all about celebrating life, celebrating each other, and enjoying time as a family. Andrea, the boys, and I arrived Monday before anybody else. We had a wonderful day, and it was exactly as I had wished. We walked through The Galleria mall. We laughed and made many memories. We had Landon enjoy making his very own bear at Build-A-Bear Workshop. He was in Heaven picking everything out. We had an amazing dinner. We settled down Monday evening in the hotel, and I went to go have my CT scan.
As promised, I am adding additional information with each post, if available. I bet you didn’t think that was possible! However, I want to share the actual, raw reports as I see them each time. I ask God every day to not have anybody I know have to go through this journey, but this is life. With that said, there are many reasons other than cancer to have these tests, scans, and consultations. For the most part, the reports are standardized between all hospitals. It is extremely important for me to have you see what they look like, how to interpret and understand them, and for YOU to ask any questions. It is important to be in the know and speak some medical language. It can only help. So, click here to view my CT reports pre-surgery (chest and abdomen/pelvis). As I previously mentioned, the scan went well and the results were very favorable. There were no new spots, the tumors remained stable, and I was cleared for surgery.
On Tuesday, we celebrated one of God’s greatest gifts. We celebrated the birth of my amazing soul mate. We celebrated the day the world was blessed with Andrea. Through the careful coordination and very strategic planning of Aunt Jodi, my mother, and I, every one of my 30 family members arrived on Tuesday. It was amazing, and, to understand how amazing of a feat this was, God truly was watching over us to get everybody there safely! They all checked into their hotels, and we met at Olive Garden to celebrate Andrea’s birthday.
It was amazing, and it went very well. For me, there comes a point each time I have something serious about to happen when I have a moment. It is not a moment of weakness, but, rather, it is a moment of life where it all catches up to me; where my emotions are absolutely pure, honest, and unpredictable. For my surgery in 2009, it was the morning of. This time around it was at the end of dinner the night before surgery. It just happens, and you cannot control it. Your body becomes overwhelmed with the possible outcomes. I was sitting by myself at the end of a very long table. I sat there alone in my thoughts. I looked around at all that God has given me. I glanced at each of my family members, and they were all smiling. I looked at my beautiful wife and my amazing sons, and they were laughing. I thought “does life get any better than this?”. I lost it. I bowed my head, put my hands over my eyes, and I started to cry. I cried and cried and cried. I was scared, happy, nervous, anxious, confused, blessed, and filled with so many conflicting emotions. My family did what they do best. They each stood by me, put their arms around me, and cried with me. What else were they to do? There was nothing to say that wasn’t already said. They understood the moment. We all understood the moment. We made the decision, but the consequences were real now. We had to face them, but we faced them as a family.
One of the strongest persons I know, and one who rarely cries (in front of people) is my uncle. He is not the type who believes crying is for the weak. His beliefs are quite the contrary, but he is truly a rock in all of our lives. He is an anchor not only to my Aunt Jodi and my cousins, but to my family and me, and to a whole slew of other people. As he approached me, he couldn’t hold it back. He began to cry. This is something I wasn’t prepared for. To see him cry, it made this all the more real. He then asked me a few questions. He asked, “Why did you ask us all to come to Houston? Why did you insist on all of us being here? You don’t expect to make it tomorrow, do you?” And he lost it again. To be honest, I did not think about those questions until then. I never knew why this time I had to have as many there as possible. It just felt right. I felt there was really no other way to go about it this time. He was right. I did not expect to make it. I was in a place where God had given me plenty of time to prepare my family, write my life stories, and connect with so many people. It was the most emotional I have felt in a very long time. It was refreshing. It was real. It was a moment I will never forget.
After dinner, we went on with celebrating Andrea’s birthday at the hotel conference room with cake. The mood was different. It was somber and full of so many mixed feelings; so many unanswered questions; and so many loving thoughts. God gave me the most amazing family and friends. I love them because I am them, and they are me.
The following morning was Wednesday, and it was surgery day. It was early, and the night before was still fresh in our minds. We all met in the lobby. The boys were staying with Andrea’s parents during my surgery, but they made it down so I could say goodbye. It was the hardest thing I have ever had to do was hug my children as if it were the last time. You cannot even imagine the feeling. It is too horrific. My wife captured the moment for me and for them (With Landon and With Logan). I kissed them, held them so very tight, and told them how proud I am to be there dad. I told them I love them, and we said goodbye. Andrea and I led the long walk to surgery admission with the rest of the family. I took a moment to take a picture of our entourage. I love my family.
As we walked into admission, signs were posted everywhere saying they only allow 4 family members per patient. Well, we just thought maybe we could get away with this. We all found a corner, sat, and prayed. To our surprise, the events of the day began very quickly. It is a true blessing being the first case of the day. There is not much waiting to get in and get started. I said my long goodbyes to my family. It was so hard to look at them in the eyes knowing this may be the very last time they see me alive. It was surreal. They moved my mother, Aunt Jodi, Andrea, and I to a separate waiting room. Moments later they called Andrea and I back for anesthesia preparation. Not too long after, they placed my IV and said it was time. I kissed an angel name Andrea, and told her she is everything I could have ever asked for in life. I told her I love her. The nurses took me back, placed me on the operating table, and that is the last I personally remember until the recovery room.
I have never been so happy to open my eyes and see the world. I have never been able to smile so big to know God had granted me life, once again. Family member after family member came in, and I smiled each and every time I saw somebody knew. I was alive, and I was now on a course to recovery. There were no complications, and the surgery went very well. I was the happiest person in the world at that very moment that my eyes opened. Wow. My lung was removed, and I survived. I am here to live another day. If you know me, my mind thanked God that very second, and my focus changed to getting out of that hospital! I switched my mindset to recovery; to getting ambulatory; to getting well enough to go for daily walks and to get discharged. I realize this is like telling a child not to press the red button, but, if you get queasy with surgical procedures, please do not click on this next picture. However, if you are curious as I am, here is the picture of my resected left lung, tumor and all. The human body is fascinating and remarkable. We are an amazing organism.
For the next few days, it was a routine recovery. The staff is amazing at MD Anderson. I was honored with visits from my oncologist, Dr. Ravi, and surgeon, Dr. Swisher. Dr. Swisher did rounds every day to see how I was doing in recovery. He is an excellent surgeon, and a remarkable human being. It is a blessing we found him. I had a chest tube placed for drainage. Here is a picture of the chest tube going in to my left chest cavity. I was able to get up and go for a short walk the very first day. It is very complicated to move when you have telemetry, Foley, epidural, pulse oximeter, oxygen tank and blood pressure cuff hooked to you. I had hoses, tubes, and devices all over the place, but I walked! I had my mother take a picture of me the first day. It is a picture many have seen of me already, but it gives you an idea of all of the equipment attached to me.
I was able to see all of my family thankfully, especially since some were leaving on Thursday. It may have been a brief visit, but it meant the world just see their faces. As far as recovery, the only complications I am experiencing even to this day are my voice is still not normal, and I developed a seroma (fluid buildup under the skin). I am seeing a head/neck physician on our next Houston trip. They believe during surgery when performing surgery in my mediastinum, they brushed by my nerves which control my vocal cords. It could take 12 weeks to 6 months to heal. As long as it heals, I can wait although it is horrible not being able to talk! As far as the seroma, it has resolved from its peak. Here is a picture of my seroma at its peak.
While in the hospital, I had my chest tube removed 24 hours after surgery. I had my Foley catheter and epidural removed on day 4 after surgery. I was released home on day 5. Here is my operative report and discharge summary. Also, out of precaution because of some issues I was having with coughing and swallowing, I had a barium swallow test. Here is the report from this test. The barium swallow test is a very interesting procedure. I consume foods of differing textures, each containing barium contrast to be detected on an x-ray. The physician is seated at the x-ray machine and witnesses each swallow. Imagine seeing your skeleton in real time. I could see the entire procedure and each time I swallowed. It was very interesting! Here is the speech pathology report. Lastly, with no lung to take up space, your chest cavity begins to fill up quickly with extracellular fluid which eventually emulsifies into a gel-like substance. To show how quickly, here is a file I put together comparing chest x-rays over my stay in Houston.
As for my boys, we finally felt it was a good time for me to see them on Saturday, March 2. Andrea took a picture of the first time I saw them after surgery. I missed them so much. They light up my world. This picture was taken within the observatory on the top floor of my building. If you ever find yourself at MD Anderson, ask them how to get to the observation deck in the main building. It has an amazing 360 degree view of Houston, and is VERY peaceful. We spent the better part of the afternoon together, and Andrea and I enjoyed the sunset when after the boys left. It was an amazing day.
In recovery after a pneumonectomy, there are certain breathing exercises I have to do even to this day. I have to utilize my incentive spirometer which helps expand my lungs (blow all of your air out and start to breath in until you cannot possibly inhale any more air), and an acapella which is a device where you suck in and blow out until you have no air left (this device has a vibrating membrane within it. Its purpose is to loosen any mucus/debris within my lungs so I can expel them). It is hilarious when Landon gets ahold of my lung exercise machines, especially the acapella. He goes around the house blowing on it and making a sound in which I can only describe as a pigeon call. He’s hilarious.
Back to Houston, I was released on March 5, and we arrived home late that same evening. We were exhausted. We were worn down, but we were together and home. It was such a great feeling to be home with my family. There is no greater feeling then being alive. To this day, I am still in pain on and off, but the recovery has been amazing. I feel well enough to walk, but I am still unable to do any weight lifting or yoga due to the surgery. I miss my yoga so very much, but healing is my priority right now. We have many appointments coming up in the next two weeks, and I am very nervous to get my scans.
I am so blessed to have been given the opportunity for surgery and to make it through with such remarkable results. Recovery has been tough at times. Some nights I am in a lot of pain and cannot get comfortable, and some nights I can rest easily. Unfortunately, even though I am able to sleep through the night with ease, I always wake up feeling tired. I cannot make it through the day without taking a nap right now. My biggest fear currently is knowing how a major surgery can affect a person’s fight against cancer. I have read many stories where post-surgery there was never a full recovery and the battle was lost because of it. The stories were filled with many setbacks and surgical complications. The body never fully healed enough to begin any further treatment and the cancer took over. I have been off of chemo for almost two months now. It scares me to no end having a scan tomorrow (I will go over our schedule shortly). Essentially, I have not been systemically fighting angiosarcoma which is known to spread fast and all over. It is a disease which can change course in the blink of an eye. Obviously, we have no choice but to be off of chemo, but it does not make the situation any easier. In fact, it makes it much worse because up to this point we have kept the disease at bay and actually shrunk it. We have been winning this horrible fight so far. The decision to have surgery did not come without serious risks, and this was one of them. It is in God’s hands, and I must put my trust in him that He gave us the insight and knowledge to make the right decision in regards to surgery. He has been answering our prayers all this time. I am forever grateful to Him.
Many of you read my post regarding my pathology. I intentionally left out a part because I wanted every person to understand the seriousness of the results. However, the results I spoke of were preliminary. We received the final pathology the other day. I had mentioned before the margins did not appear to be clear of disease and the pleura (lining of our lungs) tested positive for disease also. You all must have been praying hard even though you did not know exactly what to pray for. The final pathology stated that all of the resection margins were negative for disease (no disease present). As far as the pleura, there is a discrepancy that we still have to figure out. When surgery is performed, there are different sections submitted to pathology for review; frozen section and permanent section. From what I understand, the frozen section is submitted immediately while I am still in surgery and opened up. It gives the surgeon an opportunity to alter course should the need arise because of an unexpected pathology. The permanent section is generally much more precise and accurate because time is taken to perform all of the proper staining and testing. With that said, the frozen section tested positive for disease but the permanent section tested negative. Here is the final pathology report. However, we will be erring on the side of caution, and treating it all as the disease is still present. This was the plan all along to continue systemic chemotherapy. However, with the final pathology and in the words of my primary care physician, this is the best news we could have hoped for. Thank you for all of your wonderful prayers, encouragement and love. We will move forward and continue fighting!
Now, I am sure some of you are wondering what it is like to have only one lung. For those who don’t necessarily know the physiology of the lung (which was one of my most favorite things to learn along with the cardiovascular system), it is quite amazing. When I breathe, you cannot tell I only have one lung because my chest wall moves the same. Your normal breathing is called negative pressure breathing. Your diaphragm and chest muscles pull your chest up and outward. Due to the anatomy of your lungs, this creates a pressure slightly less than ambient pressure (pressure exerted on your body). This negative pressure difference draws air into your lungs. It does NOT force air in to you lungs like a ventilator does (which, incidentally, is called positive pressure breathing). I hope this makes sense. I only bring this up because my breathing looks normal on the outside. Furthermore, my breathing feels normal when doing minimal work and just your normal every day activities. I am not short of breath or gasping for air. As you can see from this picture, my right lung had already compensated enough to provide oxygen saturation of 98-100% on room air, which is quite remarkable.
However, when I exert myself at the moment, I do get winded a little more easily. I am also still recovering and a lot of my muscles are still regaining their strength in my chest cavity. With that said, over time, my body will allow me to do more and more as my chest heals and my right lung grows. As far as other symptoms, one thing I have noticed is eating a big meal. If you have ever noticed when you fill your stomach, or overfill your stomach, it is somewhat hard to take in full breaths. If you think about it, your stomach is expanding to accommodate your food intake. It has to expand somewhere and part of this expansion is upward into your diaphragm. With one lung, I have noticed the hard way I have to be careful how much I eat. It is not fun or comfortable even being full. I become very short of breath, and, at one point, it was very hard to even breathe.
As my left chest cavity was filling with fluid, you could physically hear liquid sloshing around inside of me. It was neat and creepy at the same time. My family can attest to hearing it so I know I wasn’t hallucinating! Those noises have since subsided. As far as other differences, there really isn’t much because your body has the amazing ability to compensate with only one lung. Granted, I have not exerted myself with much exercise, but I think I will be okay. The biggest thing I had to be careful about was doing any excessive lifting or overexerting my body. As you can imagine, with just non-emulsified fluid in there for the moment, all of my major organs in the mediastinum (esophagus, heart, major blood vessels, other lung, etc.) could essentially shift drastically to the left. This undoubtedly would cause a tremendous amount of problems, some being life threatening. From what I can tell externally, this has not happened, but to be sure, the CT scan tomorrow will surely tell the current situation.
We now move forward and hopefully get cleared to begin chemotherapy again. I never thought in my whole life I would say this, but I miss being on chemo. It is a safety net. It is a feeling that we are doing something and this something is working all throughout my body. Not being on therapy is driving me insane. I hope and pray the disease has not undone all of our hard work to this point. We have endured a tremendous amount together over this past year. However, if the results are negative in nature, we don’t change course or attitude. We move forward and we continue to fight no matter what!
Our schedule for the upcoming two weeks:
Monday, March 25 – Andrea and I travel to Houston
7:00pm – Blood draw and CT of chest/abdomen/pelvis
Tuesday, March 26
8:00am – Consultation with Dr. Swisher (thoracic surgeon)
10:00am – Consultation with Dr. Ravi (oncologist)
Wednesday, March 27
7:30am – Laryngoscopy, stroboscopy – determine if there is damage to my voice
Afternoon – Fly home
Tuesday, April 2 – Andrea, Landon, Logan, and I fly to NYC
3:45pm – Consultation with Dr. Tap (oncologist)
Thursday, April 4 – We fly home – we are making this a 3-day mini vacation
Please continue to keep us in your thoughts and prayers. We will keep you updated as we find out more information. Thank you for your love, patience, generosity, prayers, and unwavering support. We cannot and will not do this without each and every one of you. We love you all so very much. Have a wonderful day.