Full Circle...
I never really ever thought I would get sick like I was. It is hard to explain how you feel when you are sick all the time. One thing I can say, the pain and roughness becomes normal. You get used to all but the worse parts. It becomes just part of the day. Just something to get through till you feel better. Something for a pill to fix, if it can.
Oh, I always wondered what it would be like when I was healthy. What would cancer be like? Does it hurt? Would I have the strength to fight it off and win? Would I have strength if it looked like I was going to lose? I am sure most people entertain those thoughts, especially if and when they have family members fighting these types of diseases.
I never thought I would actually get something like this, let alone a rare disease like Cushing's Disease. It is like nothing I ever imagined. You think, that if you get sick, you go to the doctor, they diagnose you and you get better, or at least get treatment and eventually get better. Not so with Cushing's and I imagine not so with a lot of rare diseases.
It would take years to diagnose and I would lose a lot of who I was. I would face the loss of my ability to be mobile, my ability to think, to make love to my wife, my military career, and I would end up lost in my own mind. Cushing's causes high cortisol and it plays hell on the body and mind. It would end up destroying my bones, my teeth, my muscles and cause mental illness like symptoms. I have a hard time talking about that. I will save it for another day. The rawness of it still burns.
Once I had the diagnosis of Cushing's Disease (2006), it would take almost 18 months to get to the first surgery. Having a diagnosis really meant they just "thought" it was Cushing's, it would take literally dozens of more tests to "confirm" it in their minds. By October, 2007 I was fully diagnosed and had the first surgery to attempt a cure. The doctors at MD Anderson performed brain surgery to remove a pituitary tumor, the cause of my Cushing's Disease. It failed. I had a brief remission but it came back.
By June, 2008 I was on ketoconazole. Ketoconazole is used for the treatment of fungal infections. In larger doses, it is a chemo drug used to treat cancer and Cushing's. I used this until December 2008 in the hopes the body would mend some before the next surgery. It was not without its own problems, but I have to admit it did work to a degree.
On January 30th, 2009 I had a Bilateral Adrenalectomy or BLA. This is the removal of both adrenal glands. It stops the brain tumor from being able to send signals to the adrenal to overproduce cortisol. Cortisol is a natural steroid produced by the adrenal glands. Cushing's is the overproduction of Cortisol. I will take pills to replace what my body no longer can produce. Without the pills, the body would go into shock and quite quickly you would have a fatal response because of the adrenal insufficiency event. Not to fear, I have plenty of pills!
So I have come full circle. I have been tested, diagnosed, treated and cured of Cushing's Disease. Addison's Disease now replaces the old because of the BLA. While I have come full circle, we know that Cushing's Disease took years to damage body and mind. It will take many months to several years to undo what was damaged. Somethings will not go back to normal. No one can say what that is. Every patient is different.
I don't wonder what it would be like to have something like cancer anymore. One disease was enough. It is a disease like no other. One where you have to fight the doctors to get a diagnosis. One you have to fight the disease not to give up and let it win. One where the chance of a surgical cure is low unless they remove your adrenal glands. One where you are likely to trade one disease for another to get a cure. It is like no other alright. I fought Cushing's Disease for over 7 years. On January 30th, my family won the war. We have finally beat Cushing's. Now to heal body and mind...
Oh, I always wondered what it would be like when I was healthy. What would cancer be like? Does it hurt? Would I have the strength to fight it off and win? Would I have strength if it looked like I was going to lose? I am sure most people entertain those thoughts, especially if and when they have family members fighting these types of diseases.
I never thought I would actually get something like this, let alone a rare disease like Cushing's Disease. It is like nothing I ever imagined. You think, that if you get sick, you go to the doctor, they diagnose you and you get better, or at least get treatment and eventually get better. Not so with Cushing's and I imagine not so with a lot of rare diseases.
It would take years to diagnose and I would lose a lot of who I was. I would face the loss of my ability to be mobile, my ability to think, to make love to my wife, my military career, and I would end up lost in my own mind. Cushing's causes high cortisol and it plays hell on the body and mind. It would end up destroying my bones, my teeth, my muscles and cause mental illness like symptoms. I have a hard time talking about that. I will save it for another day. The rawness of it still burns.
Once I had the diagnosis of Cushing's Disease (2006), it would take almost 18 months to get to the first surgery. Having a diagnosis really meant they just "thought" it was Cushing's, it would take literally dozens of more tests to "confirm" it in their minds. By October, 2007 I was fully diagnosed and had the first surgery to attempt a cure. The doctors at MD Anderson performed brain surgery to remove a pituitary tumor, the cause of my Cushing's Disease. It failed. I had a brief remission but it came back.
By June, 2008 I was on ketoconazole. Ketoconazole is used for the treatment of fungal infections. In larger doses, it is a chemo drug used to treat cancer and Cushing's. I used this until December 2008 in the hopes the body would mend some before the next surgery. It was not without its own problems, but I have to admit it did work to a degree.
On January 30th, 2009 I had a Bilateral Adrenalectomy or BLA. This is the removal of both adrenal glands. It stops the brain tumor from being able to send signals to the adrenal to overproduce cortisol. Cortisol is a natural steroid produced by the adrenal glands. Cushing's is the overproduction of Cortisol. I will take pills to replace what my body no longer can produce. Without the pills, the body would go into shock and quite quickly you would have a fatal response because of the adrenal insufficiency event. Not to fear, I have plenty of pills!
So I have come full circle. I have been tested, diagnosed, treated and cured of Cushing's Disease. Addison's Disease now replaces the old because of the BLA. While I have come full circle, we know that Cushing's Disease took years to damage body and mind. It will take many months to several years to undo what was damaged. Somethings will not go back to normal. No one can say what that is. Every patient is different.
I don't wonder what it would be like to have something like cancer anymore. One disease was enough. It is a disease like no other. One where you have to fight the doctors to get a diagnosis. One you have to fight the disease not to give up and let it win. One where the chance of a surgical cure is low unless they remove your adrenal glands. One where you are likely to trade one disease for another to get a cure. It is like no other alright. I fought Cushing's Disease for over 7 years. On January 30th, my family won the war. We have finally beat Cushing's. Now to heal body and mind...
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