Should Have Seen It...

I guess I would be lying if I said I wasn't worried. I thought this time, I would be facing this alone. No testing buddy. No surgery buddy. I was wrong. You are all right here with me and my wife. I have the easy job, I just have to show up. My wife will be alone for the four hours. I know that she won't because you are all here in spirit, family, friends, buddies and strangers alike. We are a family scattered literally in many countries, but we are all family.

I could not have even dreamed of a cure if it wasn't for the likes of MaryO, Monica, Robin, Gina, Karen(Roon), Lisa(LisaE), Jaime and many others. Like many families, we have our ups and downs. Tomorrow, we all win one for the good guys. Each surgery and cure brings more light to all of us who have and are still dealing with Cushing's. Tomorrow, we move one off the Cushing's Diagnosis tally and put one more on the Cured tally. I am scared, but I am ready. I love you all. Read more!

Welcome to Should Have Seen It. This is a place where I can come and talk. A place where I can share my journey. I want people to know that even when things aren't always going right in your life, there is still good to been seen and experienced.

I have been living with Cushing's Disease for years. It is a tumor, in the brain in my case, that wrecks the systems of the body. It is a curable disease, in most cases. The problem is that the cure is as hard to get as the diagnosis is. Sometimes it takes drastic surgeries and more than one. I had the brain tumor removed in late 2007. I had a few months remission and it came back.

This Friday, on January 30th, I am headed once again out of state to surgery. This time, they will remove my adrenals also known as a BLA. The BLA is a way to cure Cushing's, but in an extreme way. I am not a candidate for gamma knife because the brain tumor has spread like the roots of a tree. I did Keto (its a dual use drug that has antifungal/chemotherapy uses) that helped keep it in check. It looked like it might have started damaging the liver, which is totally reversible if it did.

I will trade Cushing's Disease for Addison's Disease. Cushing's is not manageable. Addison's, we are told, is no picnic, but it is manageable with medication. I can live a long full active life with it. The surgery is the cure for Cushing's for my case. The recovery will take years and we realize that I may not get back to 100% of what I was. That is ok, we accept that. I look forward to a life that is Cushing's free.

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Isaiah 6:8
Then I heard the voice of the Lord saying,”Whom shall I send? And who will go for us?”And I said, “Here am I. Send me!”

We are the orphans. We are the zebra’s in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing’s. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst.

We are the sick who are forgotten. We are the ones our doctors dread to see. We are the zebra’s mingled with the horses and no one sees our stripes. We are the untreated, the mistreated, and misdiagnosed. Our hooves pound like zebras and no one bothers to hear them.



We never asked for this to happen to us and yet we would rather it be me than anyone else we know. We know what it is to live with Cushing’s and some days, it doesn’t feel so much like living as it does simply like surviving. We would not wish this on anyone.

I have lived this life for years, as many others have. I have prayed for some meaning for it all. I have prayed for strength and wisdom. I have pounded my head against the wall in frustration. I have served in the military and on the streets as a cop. I have walked where other fear to tread. I have fought when others would run. When I think of Cushing’s I sometimes want to hide in fear. I don’t want to fight. I want to run and hide.

I believe our prayers are answered, but not always how we hope. I prayed for this to go away, and it has not. I prayed for the wisdom to know, and most times I stumble. I prayed for meaning of it all, and I was blessed. Blessed with the ability to write where I never knew I could. To help others know what it is like to be a zebra. To help one or two have a better day because they know they aren’t alone. I prayed for a meaning to my struggles with Cushing’s.

I believe that I was given a talent to take the place of those Cushing’s has robbed me of. I don’t believe the Lord gave me a terrible disease. I do think he gave me a chance to make some meaning of it and maybe help someone along the journey. I think each and every one of us can find the good in a bad situation. It doesn’t have to be Cushing’s or cancer. It doesn’t even have to be about religion. Just dig deep and find that something that keeps you keeping on. Hold onto it because it is more precious than gold.

I hope to use my talent to help others. Not just Cushing’s patients, but everyone in the same kind of deep dark place we find ourselves. I am not the best voice and I am imperfect as they come. Sometimes I do not write so well, but I am willing to stand and try. I believe some things need a choir to sing about it in this world. While my singing is out of tune, it does come from the heart. Together, our voices can be heard where the one might fail. It just takes us standing up when we hear that call, Whom shall I send and who will go for us? Here am I. What about you?

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