I know, I know, it has been a while since I have updated everyone on what is going on. First, I am going to share some thoughts before I give an update.
This pandemic has been very interesting to me. There are many on both sides crying foul play. Masks are awful and shouldn't be worn while on the other hand many say that masks are now essential to our way of life. I don't know who is right and who is wrong. What I do know is that everyone is getting a very tiny glimpse of what us "high risk" people deal with every day of our life. People say if you are "high risk" you should alter the way you live so you don't get it and we shouldn't have to worry about you. I promise, we have altered the way we live in so many different ways even before this pandemic.
I have been dealing with my own personal pandemic for almost 3 years now and what I wouldn't give to be able to go back to living a normal life without cancer and without masks and without the fear that has been spread. Unfortunately I don't know if that is in my cards. I don't know if my personal pandemic will ever go away. I don't know if I will ever return to normal.
I know people who have other ailments that feel the same way. I have a sister with Type 1 Diabetes (her own personal pandemic) who would give it up in a heart beat and would try anything, like wearing a mask, so she could live a "normal" life of not having to babysit her blood sugar levels in fear of dying.
I have done multiple trials in hopes that it would cure my cancer. Even though they were unsuccessful I have no regrets about trying them because they gave hope. What I am trying to say is that if a mask is what the doctor/experts order to help with the pandemic and gives us some hope of returning to normal, why wouldn't we do it? For me, even if it isn't a so called cure if it helps slow down disease I would take it in a heart beat. If it allows me to get closer to a normal life, I would take it.
I am not telling anyone what to do and how to live their lives but wanted to share my thoughts from maybe a different perspective then you are used to.
Sorry for my rambling. Now on to the actual update.
I met with Dr. Grossman (my oncologist). He was extremely pleased with what the Y90 treatment did to the tumors in my liver. He seemed pretty giddy which obviously makes me pretty happy. He said moving forward we really had 2 different options. First, we could do nothing and wait to see what happens. Continue with the scans and watch for it to return. When it does, go back after it with the same Y90 treatment. Second, he thought we could go back to trying Pembro and see if there was any response the second time around. Me not being one to sit around and wait I said let's move forward with Pembro.
Come to find out, insurance won't cover something where you have seen disease progression. Pembro is about $25k per treatment. For me it seemed like it was off the table until they told me that I might be able to qualify for the Merck Access Program which would give me the drug for free for a year. I was amazed that they approved my application so I don't have to worry about the cost.
I did my first treatment on August 17th. All went according to plan. The biggest obstacle was related to the blood work on my liver prior to the treatment. With the Y90 treatment I know that there was some damage to my liver and the hope is that the liver fixes itself at some point. Some of the metrics they look at regarding the liver were high. I am sure at some point if those metrics don't get under control we would have to start looking at doing something else. Like I said previously if this get's me back to some state of normal I will take it.
This past week I have felt pretty crappy pains coming from my liver. I haven't had much energy but am optimistic I am starting to get some of that back. Time will tell.
We have been pretty busy lately too. Made a trip to Lake Powell, Brooklyn's team won a soccer tournament, Madi, Easton and Brooklyn all medaled in a Pickleball tournament, went on frog hunt, Boston start soccer and flag football, Madi started working at the Jimmy John's in Kaysville, kids all started school and many more adventures I am sure I am missing. Needless to say we are still enjoying life!
#cancersucks
#fightlikehell
