Still Here

After my June 7, 2019, column some of you may be wondering how I am still writing columns. Me too.

I’ll bring everyone up to speed, but first a little background. In January 2017, I was diagnosed with squamous cell carcinoma on my spine just below my brain (I know, work with me though). The cancer started on my chin and progressed slowly from there. Such are the perils of being of Irish ancestry. I am a Fitzpatrick #1, the easiest of skin types to burn. After 18 months of visiting 16 different doctors seeking relief for neck pain. I was referred to Mayo – Jacksonville by Dr. Mark Lafferty, a close personal friend and an outstanding OB/GYN. That made for some funny moments at Mayo. The doctors and staff at Mayo were great, but honest about survival probability. Despite bleak odds, I survived the aggressive treatment and appeared to be cancer free. After a honeymoon period of being cancer free, during which I lived life to the fullest, the cancer returned in December 2018, and the great doctors at Mayo treated what they could but gave me three months to live due to no additional conventional treatment options around my brain.

Mayo’s team approach paid off as one of the doctors mentioned a new drug that had just been approved by the FDA for advanced, non-treatable squamous. Sure, I said, if it helps advance the science, let’s do it. After 3 months on the new drug, I came down with quadruple pneumonia (4 different bugs), a kidney infection and shingles. I was pulled out of the experimental treatment as it appeared the drug was causing more trouble than it was solving. By this point, the cancer had spread to the meninges, the substance that surrounds the brain. Called leptomeningeal disease, it is always fatal untreated, life expectancy is 2 weeks to 2 months and was, for me, essentially untreatable given that I’ve had extensive radiation in that area. I was sent home at the end of March, 2019 and placed on hospice care. I wrote about the bad news on June 7, 2019 and said that God was in control. Then friends began to pray. Family members began to prey. Friends of friends and friends of family members began to pray. Facebook friends and their friends began to pray. You get the idea. Although people would tell me they were praying for me, I don’t think I understood the vastness and power of that combined prayer until my rebound began to happen. Now I tell everyone to keep praying because it works.

After three months of being poked and prodded, twice weekly blood tests and even a failed attempt at physical therapy (I was too weak to do minimal exercise), I started to get better. And better. So I called the doctors at Mayo for a follow-up appointment. Needless to say, the doctors were shocked to see me as they had never seen anyone survive, indeed improve, with leptomeningeal disease. The working theory now is that the pneumonia and shingles and kidney infection came from other sources and that the drug (Libtayo) was actually working. I was then readmitted to the program with instructions to stay away from sick people.

I continue to improve. My nerve damage is not growing. My stamina has stabilized, I can walk without a walker and I have no symptoms of leptomeningeal disease. I’m not even using my disability permit for the good close-in parking! The drug requires me to stay out of the heat, so I don’t go out much in the middle of the day. To be clear, other than maintaining a positive attitude, I take no credit for any of this. God has blessed me with a wonderful life (my favorite movie? “It’s A Wonderful Life.” I still cry at the end). I know where I’m going to spend eternity and frankly, if I get hit by a bus tomorrow, no regrets. We are not guaranteed tomorrow, so live it and love it while you can.

I’m going to keep writing until I can’t. I’m going to keep loving until my last breath. I’m going to enjoy every moment as I wait for even better moments. I wish for you happiness, love and God’s blessings.fb banner ma and krb

 

 

 

 

2 Comments

  1. I would like to express my respect for your will power and more so for the growth of your faith. It is easy to give up when facing situations as dire and hopeless as yours seemed. I am glad you are still here. Even though I only have the tiniest glimpse of your struggles I feel I have learned that we must struggle not just for ourselves but for all who might observe and follow our example.

    In short I will strive to have a positive attitude like you.

    Like

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