The last few months have really shaken me. I’ve always been one to have a very strong core. One that others lean on. One that others come to for advice and strength.
From the moment the doctor called me and told me my cancer had spread I started off strong. I went to cancer diagnosis like everything I do in life. A challenge that if I worked hard, I could take care of. I don’t think I realized exactly what the diagnosis meant. I did not realized it meant I was terminally ill. I saw it as I have cancer and I am going to fight it and beat it.
I started researching frantically finding out what exactly what’s going on with my body. What the cancer was doing. How the doctors were going to fight cancer. And of course, I researched every single alternative method of fighting this cancer. And what I found was that regardless of who you were, how old you are, your physical condition, what you did before cancer, all really didn’t matter. The statistics were the same. Only 22% of those diagnosed lived for five years. Now I am finding that those who pass the five-year mark seem to fight for about 8 to 10 years. That was most you could get out of the drugs today.
There were a course exceptional responders. They say that’s 1% to 3%. I have a girlfriend who is an exceptional responder. I, of course, thought that would be me too. That I would live well pass a five-year six-year mark just like her, living 16 years with this diagnosis.
When that was my reality, I really
couldn’t think of it In any other way. I would be an exceptional responder. I started off showing promise. The first drug I took was a brand new one. It was called an inhibitor. Yes, it’s considered chemotherapy because it attacks cancer cells but it attacked the cancer cells by inhibiting the growth of them. Not by stopping it. I did very well on it over 2 1/2 years. I seriously thought I would be on it the rest of my life. When the inhibitor failed and cancer grew, I was really shocked. “Wait a minute, I was supposed to be in that 1 to 3%?” I wasn’t supposed to have things fail on me. The next step was more traditional chemotherapy. We went to see the City of Hope and the researcher/doctor told me that I was an average responder. Meaning each drug I would take I would get average results from. That was quite a shock. With the drugs available at the time that gave me a prognosis of three years.
The next step to battle the cancer was traditional chemotherapy. again I was hopeful that I could be on this drug for years. There are many women who seem to have tolerated it for 2 to 4 years. But for me, it was only 10 months of cancer suppression. Again, it would turn out I did exactly the average amount and was not an exceptional responder.
Not only did I do the average, but my cancer had also mutated. It had mutated to the most aggressive and most difficult type of cancer to treat.
If that wasn’t enough news for us, on August 13 I became violently sick throwing up not able to walk and babbling incoherently. There was no sign, no warning. I had felt slightly flu us for about a week but I attributed that to the immunotherapy. I don’t remember the 48 hours previous to my hospitalization. I don’t know who I talk to, I don’t know what I did, and I don’t know where I went.
The family tells me they had me rush to the hospital while the doctors try to figure out what happened. Today we have a different impression of what happened. At the hospital, at first, they thought I had overdosed on opioids. My family explained to them that that wasn’t possible. I didn’t have access to opioids to OD on. They waited for the blood test to come back negative.
Then the doctor really started to get worried. Immediately he treated me for some type of meningitis with IV antibiotics and IV antivirals. Then he got a call from Oncologist that I had had immunotherapy recently and that maybe this was a reaction to the new therapy. Unfortunately from that point on while they continued the antibodies, they looked at me as having a reaction to treatment. They never did a spinal tap to see if I had meningitis.
Weeks later after I was hospitalized, I found out that I was exposed to meningitis. A person in my home, and had meningitis And had exact same symptoms. John and I are positive that I had meningitis not a reaction to immunotherapy. I have all the symptoms side effects and I am still recovering from what would be a very serious uncontrolled meningitis infection. Unfortunately, the doctors disagree, they believe it was immunotherapy and I can never try immunotherapy again.
This leads me to why am writing today. My mindset has drastically changed with the most recent months. I have been from the depths of not even understanding language and people, to trying to follow long on TV shows and to now having conversations and enjoying talking with people. My brain is taking quite a while to recover. Meningitis caused a brain injury, I had encephalopathy, toxic encephalopathy they call it.
For anyone who’s ever had a type of brain injury do you know how hard it is to control your emotions and understand people? There’s a lot of anger and frustration. It comes from nowhere and can stay all day.
Last two weeks I’ve been doing so much better I’m getting out and walking. Honeybear and I go out to dinner into public places. This is a huge improvement then lying in bed 24 hours a day. I am overly blessed by friends, girlfriends family, and even acquaintances who pitch in and help for almost 6 weeks while I was bedridden.
I started the day by reading someone else’s blog post and it really made it impact me. The mindset that I had lost I need to find again. I need to find that fighter, warrior, winner in me. While my prognosis is poor. I don’t want to believe that anymore. I want to believe that God is putting me through this journey for a reason. I have had a very harsh journey. Something so horribly difficult it’s hard to believe that I made it through it.
I feel like I have lived a life full of hardship, trauma, and overcoming. I can’t see it ending like this. Somehow I’m going to overcome this somehow I am going to be a ”champion.” In her blog “Champion Mindset” Macy Jones states “Many times in life we fall down, we get banged up, broken and hurt. We can choose to stay down, feel sorry for ourselves and cry… or we can get back up.” She has overcome trauma and more. She is right, we can choose to stay down, or get back up. While I may not have control of what the cancer is doing my body, I do have control of how I feel about my life.
Today I want to seek out that deep down Find that drive I used to succeed to do all the things I had before in life. To believe that this cancer will stop growing. They say you can’t think cancer away. However, I can pray and push to have an attitude of hope, of winning this battle and having a “Champion Mindset.”