Tuesday, January 2, 2018

Happy New Year!

Happy New Year to everyone. I hope you all had a great holiday season and are starting 2018 off well! It has been a couple months since I let everyone know what has been going on. Honestly, I just have not felt like writing about it. It has been a very hard couple of months making treatment decisions and traveling a lot to New York and New Jersey. The past few months have been without a doubt the the hardest I have faced through this journey.

The last time I updated, we were trying a chemo I have had several times before, ifosfamide. The hope was that doing this after proton therapy would help further shrink the tumor that was near my heart. The plan was to do 2 rounds and then see what the scan looked like. When we did the scan, there was some good news regarding the tumor near my heart. The proton therapy appeared to have killed a large portion of the tumor and it was much smaller. The bad news was there was a new very large mass in my right lung. This mass was about 12cm and taking up a lot of room. It was clear that the ifosfamide was probably not working. After this we attempted another chemotherapy which was given outpatient and I was referred back to the Proton Therapy team at MSK in New York. All of this happened almost simultaneously and at this time I started to become very sick. I struggled with side effects from the new chemotherapy they had given me and we had to travel to NYC that week. Needless to say it was a very difficult trip. We made it through like we always do. With the help of my wife and sister in law Sarah, we made it to NY. We stayed with our close friends in Queens who are always willing to open their house to us at a moments notice. After meeting with the team at MSK, they were confident that Proton Therapy would be beneficial and we would start ASAP. We headed to NJ that weekend to have the planning CT scan. The plan was to do what is called quad shock. High dose treatment twice a day for two days and then rest for a few weeks and treat again. I finished the first round of treatment in early December. I was extremely symptomatic at this point. I was not getting out of bed much because it was too hard to breath. My pain had become much worse and I was put on stronger pain medication then what I was already on, and I had a terrible cough that never stopped. Never in the 10 years that I have had this disease had I felt this symptomatic. It came on so suddenly and was very hard for me to deal with. I did not want to get out of bed and my appetite was almost non existent.

After coming home from NJ, my condition stayed the same for almost 3 weeks. Finally this past week, I have been feeling a bit better. My breathing is much better, although I have very little stamina and get short of breath easily, I can at least get out of bed and do some things around the house. My pain is under control for the most part and my cough is not as frequent. I am hoping these are all good signs about the treatment, but time will tell.

I went to NJ last week to have my second planning scan. Now we just wait to hear for a date to head down for the second round of treatment which should be within two weeks. Depending on how well this works and what the rest of my disease looks like, we are considering surgical options after proton therapy. The hope is that we can get the disease under control enough to be able to take a majority of it out surgically with less risk. We are also always looking at other clinical trials around the country that may be effective.

I will do my best to update periodically. Thank you all who follow along and constantly send you love and support. Happy New Year everyone!

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