So I have made it through the first week of the trial. I haven't noticed any side effects and I feel fine minus being in some pain, but we are addressing that situation. The last scans I got from NIH showed an increase in the liver mass plus multiple spots on multiple bones (femur, humorous, rib cage, and back). That helps explain the pain I have been having in my side right along my rib cage and into my back. Right now I am using a Fentanyl patch and pain pills to help keep the pain down. It seems to be working right now after having the up the dosage of the patch. As long as it stay on top of taking my pills the pain is under control. I am also going to go see a Pain Management Doctor next week to see what some other options are. We are also going to see if I am able to do radiation while on the trial. Which I think this would be the best option but I'm not the doctor.
We will be heading back to Maryland this coming up Monday for the two week check up with the doctors. My appointment is on Tuesday but it will still end up being a 3 day trip with the traveling. We will be making this trip every other week for as long as I'm on this trial. At four weeks they will repeat scans to see if there is any progress. After that first set of scans they will the repeat them every 6 weeks. If after 8 weeks there isn't evidence of improvement I will stop the trial.
Since its Thansgiving I just wanted to let everyone know what and who I am thankful for.
I am thankful for my family and friends for their continued support through this journey. I would not be where I am physically or mentally without each and every one of you. The encouraging words and prayers really mean a lot especially when things don't seem to be getting any better. Sometimes all it takes is that one text or that one hug to turn the day around. And I am fortunate enough to have so many people that will take the time out of their day to send that text or make the effort to just give me that hug.
I am thankful for the doctors, nurses, techs, and any other medical staff that has been right beside me through this journey and made sure the path has been as smooth as it could possibly get. There are some special people in this medical world that really know how to make a patient feel comfortable.
I am thankful that I am still able to work and go racing. Both of those hobbies (I guess my job can be considered a hobby) allow me to forget what is really going on and let's me enjoy the two things I love doing. Both my gym and racing families have really stepped up and shown what true support is.
And lastly I am truly greatful for Kyle. He has been beside me since the very beginning and will do whatever it takes to make sure I am comfortable and happy. From refusing to fly anywhere when we met 9 years ago to now refusing to let me fly by myself to appointments just shows how lucky I am to have him with me during this journey. I wouldn't be near as strong if it wasn't for him.
If you are reading this, I am thankful for you! You took the time the see what was new in this crazy thing I like to call life.
So what are y'all thankful for?
Happy Thanksgiving!! Enjoy the day with family and friend. And good luck if you are going Black Fridsy shopping!