I'm at chemo treatment right now. I feared being turned away, but they said they are only giving treatment to the ones most desperately in need. Now I wish I had been turned away. The doctor appointment was the most unhopeful yet. Treatment may no longer be working. CEA level is higher than it's ever been. Now they're worried about my heart and want testing. If this drug no longer works, there is no other option but to hope another experiment comes along. The doctor teared up and said it is always terrible to give such bad news. The treatment room is almost empty.
Thursday, March 19, 2020
I hate to sound insensitive to the plight of the public now. I have the same concerns about the pandemic as the rest of you. But it's kind of perplexing to see how uncomfortable others feel about social isolation.
I've been doing this for going on 6 years now. Family is spread out. Some of them are busy 7 days a week. Some friends live far away. Some friends are too uncomfortable at seeing me not being physically perfect. Some friends respond to my despair with insensitivity, accusations, or fussing at me. And some friends are doing other things.
So needless to say if you find yourself at home 7 days a week for a few weeks, it ain't so bad. Be thankful you don't have to do it for 5 years straight before you finally get out and have a road trip somewhere other than the hospital. The answer is to find a way to occupy yourself. Yes you can. Your phone is probably blowing up with texts, snaps and emails from your friends, so that's a heck of a lot more than what I'm working with.
And if you're lucky enough to be in-house with loved ones, then you got it made.
And if your friend calls you crying, then just listen and be supportive. Take up your sword and fight for them if need be. Put yourself on the line for them and let them know you love them.
Tuesday, March 10, 2020
Sorry this is long, but I feel a need to share.
I don't know if I've ever shared this with facebook or my blog or not. I have told a few people. But now I would like to share it with everyone. It involves a dream I had right after coming home from my cancer surgery in 2012 when I was stage 2.
This is the most vivid dream I have ever had. I usually don't remember my dreams.
I was in an elevator at the bottom of the ocean. There was a small window in it where I could see nothing but mirky water. A man was in there with me, a plain ordinary unknown man. He looked at me and said that I must forgive everyone or I will spend eternity in this elevator alone - forever. I asked him to clarify who everyone was, my friends, people in jail or who. He replied that everyone means everyone who has ever been and no matter what they did. I specifically asked if that means Jim Jones for killing 900 people and Charles Manson. He replied everyone. I then asked if that also means Satan. He said "yes, everyone means everyone, or eternity in this elevator alone.
He explained that I have no authority to judge no matter what someone has done. He said that MY afterlife is directly related to my willingness to forgive in this life and so is everyone else's. He explained that it will be the most difficult command for me to follow, but will have to find a way no matter what, because my soul depends on it. I have to forgive murderers, rapists, robbers, bullies, those who do me wrong, terrorists, etc.
Then I woke up. I don't know who the man in the elevator with me was, but I believe him with every fiber of my being. I think the gist of his message was that, no matter what your religion (or even if you don't have a religion), your sense of peace after death depends on your willingness to love unconditionally and forgive unconditionally. He seemed to understand how difficult this is for people who have actually been wronged, raped, murdered or whatever. I choose to believe him and have tried to live up to that ever since.
Make of this what you will.
Monday, March 9, 2020
The doctor started with "this isn't good news" and then proceeded to tell me three of the places in my lungs have grown. He said we will do another scan in 6 weeks. If they grow more, we will make another plan.
I have been on this drug (vectibix) for one year in just a few weeks. It's my second year on biologic immunotherapy.