I have a dear friend, Steve, who is suffering with Cushing's. I met Steve first online at cushings-help.com's message boards over 2 years ago where he was seeking help for a known adrenal tumor. He was passed around to multiple specialists and no one would do anything.
Steve was suffering mightily from the symptoms of Cushing's, yet no one would even test him for that. He persisted and pursued with two Cushing's specialists all the way across the country and was eventually diagnosed with ACTH-dependent Cushing's due to pituitary tumors. (Since many adrenal tumors are due to high ACTH stimulating the adrenals, it was hoped his would go away with the remission of the high ACTH.) He was referred by one for surgery which was done by a top-notch neurosurgeon at M. D. Anderson. Two tumors were removed, one from his pituitary and one from the sella floor.
Steve was not cured. The hopeful demise of the adrenal tumor did not happen, and he is now facing a bilateral adrenalecomy. It will happen next month. In the meantime, he as been on ketoconazole.
Not only does Steve face this after years of his body failing him due to the high ACTH, but his younger daughter is being tested for Cushing's, too. I've met Steve's family in person, and they are as dear as they come. His wife and girls are so supportive of him, and he continues to support others as much as he can in his fight for his life.
All of the above was simply to preface the story below. Steve wrote it and gave me permission to post it. (Love ya, my friend. I know how difficult this was.)
One Good Thing
If there was ever any hope it is the hope that someday Cushing's will be easier to diagnose and to treat. That doctors will recognize the symptoms and tests are developed that lead from diagnosis to a cure in weeks, not years. If there is one thing I could want to come of all this, it is that. Not just for me, but for all of you, and especially my daughter. It is the hardest thing in the world looking into her eyes. I just want one good thing to come of all this.
These past few weeks have been filled with a lot of emotions, feelings, and just plain being scared. The closer the BLA gets, the more I don't like it. I have no extra spoons to spare to try and conquer the fear, because I am using them to get through each day. The days have been filled with doctors visits, testing for me and Brooke, and work. Nothing out of the ordinary, other than having an infection we cant seem to clear up.
It was at one doctor visit, with Doctor VJ, my family doc, that is the reason of my story. You see, I haven't seen her in a year. My weekly and bi-weekly visits have all been to endo's who are taking care of everything. Well, since they were out of town, I needed to see my family doctor. This is the doctor who wrote tests and she didn't know why, other than we asked for them. She couldn't read results because Cushing's isn't so black and white. This is the doctor who looked at me and knew I had Cushing's, once she read about the physical and not so physical symptoms. This is the doctor who told us my daughter has Cushing's, like her father. This is the doctor who scoured the medical books, talked to other doctors, and researched the internet to learn what she could to help her patients.
We would learn that Dr VJ would have a new patient come to her, one she suspected had Cushing's. Because the doctor took the time to care about me, she would notice the signs and symptoms and be able to run some tests. Because she was able to see a patient that had Cushing's in the past, she was able to see it in her new one. She was able to send her to my endo because she remembered she was helping us and others. This new patient is on the road to recovery already. She is going to be alright.
This made me stop and think. I found this doctor because of the goodwill of a lawyer. This lawyer spent 10's of thousands of dollars of his own money helping me fight and beat the insurance company. This is money he doesnt want back and will not take from us. He did it out of the goodness of his heart. His words were that "there are some things that are so fundamentally wrong in the world and I am just happy that I can help you right one of them." When our family doctor gave up on us, like so many others, he sent us to Dr VJ's office. From there, the doctor and our family grew into a team to help me get better.
I feel so humbled to meet people like these. There are good people in the world. I wanted to give credit to where it is due as well. It would be easy to say that the doctors learned because I did this....or I did that...and that would NOT be true. I know in my heart that I was led to people who could help me at the time I needed it most because I believed and we prayed. I feel humbled that God put me in these doctor's offices so that I could be an instrument of learning.
I believe that every thing we say or do can be remembered, for good or bad, by those around us. Sure, we remember the big things of our lives, but I have so many vibrant memories of the little things. It isn't the big presents I remember most and hold on to dearly. It is the small random acts of kindness that I cherish the most. Everyday, we have the ability to leave a mark on someone's life, even in the smallest of ways. None of us know God's will, but I believe that in that moment of time, when I was sick and out of options, He put me where He wanted me to be and that was the that doctor's office. I had never thought of it that way. I had ALWAYS prayed that something good would come from this to help the next person. If something good was going to come from it all, it was going to come from the powers of up above, not through my works or anything I could do.
My prayer was answered. I know that something good has come from this all, even if it has helped one single person. For that, I am thankful for my blessings. I am thankful for the brief clarity of mind to write it all down.