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Lark's Story...

It took me a very long time to want to go on line and find out if anyone else has suffered from this evil disease. I'm glad to see that this web site offers so much useful, and positive information.

I was diagnosed in October, 1998, after noticing a rounded face, high blood pressure, blotches on my arms, bruising, and hair loss. I had run marathons, and always felt that I was the picture of health. I am now 52 years old. when I was told that I had Cushing's, I was panicked, and devastated. Nothing bad had ever happened to me, except for a divorce. This threw me into the world of the ill, and I had a very hard time with it.

Although my doctors knew that I had Cushing's, it took a while to find the tumor. I had the usual MRI and CT scans, which found nothing in the pituitary gland. I also had a catherization through my femoral arteries into my brain which terrified me, yet no tumor was found. Eventually, after much waiting and more tests, they discovered a very small tumor in the lower lobe of my left lung. Apparently, this was extremely rare. I continued to get sicker - developing a lot of the symptoms of Cushing's. I had a constant, squeezing headache, my joints ached, I felt fatigued, and grew increasingly weaker as time passed. My face became distorted and I developed facial hair, hair on my hands, and fat behind my neck and over my shoulders. I was so frightened as my body spiraled out of control, and I worried that no one would be able to get rid of this creepy thing growing inside me.

I had my first lung surgery in December, 1998 at the Brigham & Women's Hospital in Boston, MA to remove the tumor. I had hoped that this would be the end of it, but unfortunately, I continued to get worse. I was marinating in cortisol and it made my hands tremble, I felt bizarre, moody, my vision changed, my heart raced, and my hair fell out. They scheduled another surgery to remove one lobe of my left lung in February, 1999. This was a vicious and painful surgery - I think because of this disease, it made the recovery so much longer and agonizing. I could barely walk by this point, and needed a wheelchair on occasion. I couldn't get up from a chair. I had no muscle. Sometime after this surgery, my heart was seriously affected by all the hormonal changes and raced to over 200 beats per minute, then down to less than 35. I was hospitalized again in the cardiac unit at the Brigham & Women's Hospital for 4 days. Luckily, no damage was done, but I worried constantly that I wasn't going to make it. My husband wasn't handling this well at all, and came very close to leaving the marriage. I could barely contend with my disease and grab onto some sort of hope, let alone deal with the stress of losing my husband. After this second surgery, and the heart problems, I had a third surgery to remove lymph nodes from the center of my chest, because although this was a characinoid (benign) tumor, it spread like cancer - I think that's why they found it so extraordinary. They told me that there have only been a handful of cases like this in the world. It's staggering to think that you get something like this, and you wonder where and why it strikes.

After the third surgery, in June of 1999, I went into adrenal crisis - as the levels of cortisol dropped dramatically. I wonder if that's the same feeling that drug users go though when they go into withdrawal. It is quite scary, like nothing you have ever felt before. I was cold, hot, shivering, shaking, weak, in a state of delirium. I had the energy of a spatula. I was rushed to my doctor, who put me on more prednisone, which leveled off the crisis. I slowly began to see improvement. My face slowly began to deflate, and my bruises and blotches disappeared. It was such a long process. I marvel at the human body, and how much torment it can tolerate. I thought I was in the clear but unfortunately, I was then referred to an oncologist and had to face the possibility of chemotherapy and radiation. I was absolutely devastated by this. They told me this was voluntary - that there was so little medical precedence on this case, that they weren't sure if it would help or not. I decided to go ahead with both - and because I was still sick with Cushing's, it made the treatments brutal, excruciating, especially the radiation. They radiated my esophagus area - I couldn't swallow anything, except morphine for the pain. I had no idea that pain could be that painful. It's indescribable. There were days that I thought I would rather be dead and go through this pain. The chemotherapy made me tired, and made me throw up every day, but I think the radiation was worse. I couldn't swallow fluids, and had to be taken back to the hospital to have intravenous fluids, on four occasions. I tried so hard not to complain, not to obsess, not to drive everyone nuts about my illness, but it is totally consuming, and so frightening, that you just can't help yourself. My body had been through a tornado, and was now trying to recover. It took me 2 years. Slowly, the achiness in my joints began to fade. My hair grew back, my face is recognizable, I started to go back to walking, and then eventually back to the gym. This recovery process is so long - it's hard to believe what you go through to recover. My last surgery was just 2 weeks ago (March, 2002) - I had to have my right eyelid raised, because when they operated inside my chest, they damaged a peripheral nerve to the eye. Collateral damage, I suppose.

Today, 2 and a half years later, I'm feeling very normal - I think we take that feeling for granted. I am not the same person, physically - this has definitely done some damage to my stamina and strength, but I am grateful for what I have. I thank my guardian angel for every day. I don't know if this will come back - I pray it won't. It almost took my life, and my marriage. It has made me a more compassionate person. I don't let the little things in life bother me anymore. I feel like I've become a member of an elite club - of all those who know what it is to feel real pain, and know fear, and face mortality. It has made me love my life and live it fully. I hold my loved ones close, and push away any negative people or thoughts. Hold on tight. You never know.

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