I made a commitment to be honest on here so that is what I am going to do today. Last week when we got home from Nashville, I was in a bad place. A really bad place. As I stated in the last blog this is the first time we have never had a game plan. When we got home the reality of it all set in. We are running out of options. No one seems to know what to do and everything we try fails. And I allowed myself to get lost in my head and all of the what if's. Finally on Friday I made myself get up and mow the yard. (And yes it was really hot and dry!) My wonderful wife knows me all too well and knows how to handle me. She quietly supported me, and checked on me, and reminded me that we are in this thing together. We were able to spend and evening together with the kids outside grilling steaks and playing football and it was just what I needed. Then this morning I received and email from an old friend from my childhood days that I have lost touch with. He reminisced about childhood memories and gave me words of encouragement. It was just what I needed. I have had several people who talk about how well we have handled all of this. People have complimented us on our resolve and attitude since this started and overall we have been positive and upbeat. We made a commitment to face this head on with a positive attitude, tried to keep life as normal as possible, done what the doctor's have said, stuck together as a family. And we will continue to do the same thing. We will continue to face this head on with a great attitude, humor, and as much strength as we can muster.
Why I share all of this today is that I am reminded that I am human. I am going to have those "days". I will tell you, this is the most scared I have been through this entire two year journey. I will also say that after almost a year of surgeries and brutal treatments, I have a hard time some days getting excited about doing more. I will not lie, there have been brief moments where I have thought about saying enough is enough. But I can also say that the will to live usually gives me all the motivation that I need to get busy again, whatever the treatment may be. I guess I share all of this because we said we would always be honest about what is going on. And the other reason is to again say thank you to all of you for your thoughts and prayers. It always seems like I get a text message or phone call or email from someone at just the right time. And it isn't about the words that are said, it's about the contact with someone who cares. So thank you. I am much better now, I guess you could say I am back.
On another note, as soon as we got home I got in touch with MD Anderson. After several days of communicating with them we have an appointment next Thursday the 28th. We are looking forward to that and will let you all know what is said and done.
Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breath........................................
I'm glad to know that you still have a positive attitude despite the uncertainty of the current circumstances. And yes, you are entitled to "bad days"! We all are!
ReplyDeleteI also relate to you "not looking like a Stage 4 cancer patient". I never lost my hair, have maintained my weight (under strict doctor orders), and have been able to take care of myself throughout everything. It sometimes frustrates me when people are surprised to learn that I'm dealing with that, as if they expect me to look a certain way!
Are you going to MD to look into TIL adoptive cell therapy? That is something we are looking into right now, although I don't think I qualify at the moment. You have to have a resectable tumor and the tumor has to be greater than 2cm? We're keeping it in our back pocket though, it seems very promising and a good last resort. Keep me posted with everything, I am curious to hear what they say down there! I'm praying for you...
Please read Ty Bowlingers book "step out of the box"!!!! Just read it, it can not harm!!!
ReplyDeleteAll the best.
it is frustrating i know-especially when you dont look sick sometimes. I have thought about going to md anderson but fatigue set in with last drug so i have stopped the drug and geared up for whats next brutalBRAF fatigue. geez. keep up the fight you are doing great
ReplyDeletewow. someone i know just recently got diagosed with the same thing, and just went to the same doctor as you. im glad i pushed this link. it gives me hope that shell survive.
ReplyDelete