A small pill, a haircut and a class reunion… What do these have to do with Cushing’s?
My 50 year grammar school class reunion was happening in June 2011. I was so excited to be going. Meeting with childhood friends and learning how their lives evolved over all of these years was an event that I was NOT going to miss. Would I recognize my classmates after 50 years? Would they recognize me? And would my first boyfriend be there? I knew I wanted to look “marvelous”, so in addition to my usual daily trips to the health club, I stepped up my workout to accommodate that spectacular outfit that was waiting for me… but then Cushing’s arrived, unbeknownst to me.
On a Monday in early 2011 I took prednisone to relieve pain in my knees. Tuesday, I went to get my haircut, and Wednesday I looked in the mirror to check out my new style. I could not believe what I saw. One side of my face was normal, and the other side was puffy. What was that all about? The puffiness was very slight, but nevertheless it was a change from my normal appearance. Was the prednisone the reason for my puffy face? Weeks went by and it was not going away. Family members only saw a slight puffiness, but I saw more. Months went by, and the puffiness was still there. A month or so prior to this, I woke up to find a rash all over my body. And it was not going away. I made an appointment with my PCP who told me that the reason I had the rash was because I was taking showers that were too hot. Really?
I decided to start documenting the unusual collection of symptoms. I had numbness in my feet. I was told I had low potassium and I was now a type 2 diabetic. I noticed unusual bruising on my arms. The bruises looked like round circles with a red dot in the middle, and they were everywhere. My hair was falling out. How could I go to the reunion with a half a head of hair? There were tears. Even though I exercised every day, I was not losing weight; I was gaining weight — not exactly my plan for buying that spectacular outfit. My abdomen was getting bigger, assuming an unusual shape and I was not even able to bend over to tie my shoes. What was happening to me?
But, I was about to face my biggest challenge yet. I could not accomplish the daily tasks I was used to doing, even the tasks that usually came very easy to me. Everything became a challenge. I could not function. I am a teacher of middle school kids, and I have been teaching for over 25 years. During this period of unfamiliar symptoms, I would wake up each morning scared to go to school. I was afraid, but I didn’t know why. I was convinced that I was not going to be able to do the same things at school that I had done over and over again for the last 25 years. My family was convinced I was losing it, and sadly enough, I thought so, too. I honestly did not know what to do, where to turn, and I wondered if I was ever going to be okay again. It was terrifying.
With list of symptoms in hand, and husband at my side, I saw my PCP again. I gave her the list to put in her file (for future reference), and I asked Marty to go with me to confirm my symptoms. When our discussion ended, and my symptoms reviewed, Dr. Merwick thought that I might have Cushing’s. Cushing’s — hmm… I think I heard the word once or twice in my life. I googled Cushing’s, and to my initial surprise, I was able to find a lot of information on Cushing’s in animals, but not much in humans. After further research, yes, I had all of the symptoms — numbness in my feet, diabetes type 2, the rash, odd looking bruises, unusually shaped abdomen, high blood pressure and striations. It was hard to tell if the striations were caused by Cushing’s or by my two previous C sections. I, however, did not have any indications of a hump. I made the mistake of going to Google Images and I saw what Cushing’s does. When was the facial hair going to start — before or after the reunion? More tears.
I met with my first endocrinologist who prescribed several tests — 24 hour urine sampling, p.m. salivary, dexamethasone, etc., etc., etc. He hesitated to give me a final diagnosis of Cushing’s until I had the inferior petrosal sinus sampling test done. This test was done at my local hospital, and I later learned that this hospital was not experienced in performing this test. They did not do this very specialized test correctly, so the results were not valid. I was very frustrated, not only with the hospital but with my endocrinologist who did not return any of my calls. Each time I called and left a message for him, he would not return my calls. How stressful was that! I knew that I needed to fire him and go elsewhere. And that is what I did.
I took advantage of open enrollment, and I changed my insurance from an HMO to a PPO. This was the best thing I could have done. I did some research and found two doctors in the Chicago area who were experts on Cushing’s.
I chose to see Dr. Roy Weiss at the University of Chicago who changed everything. He is a Jewish Rabbi, who is as gentle as he is no nonsense. He asked me a million questions as he entered all of my data into my new chart. He patiently answered my same questions over and over again. He responded to every one of my e-mails, often into the early hours of the night. When I met him for the first time, he said, “I am going to do 3 things — diagnose, treat and CURE you”. I hung on to the word cure, secretly holding him responsible. I knew I had made the right choice to switch doctors. He, too, ordered the 24 hour urine, pm salivary, and the repeat of the dreaded inferior petrosal sinus sampling test. However, his hospital, The University of Chicago, did the test correctly. On a side note, I was born at the University of Chicago.
I previously had an MRI that confirmed that I had a 7mm micro-adenoma on my pituitary. The tumor was telling my adrenals to release more cortisol. The sinus sampling test confirmed the diagnosis of Cushing’s. Dr. Weiss thought perhaps a change in my DNA might have been the cause for Cushing’s. Things were beginning to look good, but all of this took approximately one year to get to this point.
With the Cushing’s diagnosis in hand, Dr. Weiss scheduled surgery on March 19, 2012. Prior to that, he introduced me to Drs. Naclairo, (ear, nose and throat) and Lesniak (neurosurgeon). What a great team I had!
So, I prepared for the surgery. I interviewed a substitute teacher to take my place. Check. I prepared all of my necessary lessons for two weeks. Check. I made sure my husband and my two adult sons knew where all of the important papers were at home. Check. I wiped the happy tears away because I knew I was going to be okay. Check.
Friends would ask if I was anxious to get the surgery over with. My response was that I needed to get it started. EVERYTHING had to be a go on surgery day — similar to the space shuttle going off. Every single detail had to be 100% perfect before the surgery started. Luckily, all systems were a go that day.
The transsphenoidal surgery was scheduled for March 19, St. Joseph’s day. I thought it only appropriate to round up all of the “Joseph’s” in my life to act as guardian angels, my dad, Joe, being the head angel, along with 15 other “Josephs”. The surgery went well — no it was fantastic. My cortisol levels dropped immediately from a count of 36 to 4. I’m told that a big drop is one way to tell if the tumor was removed successfully. I spent 3 days in ICU and was released the 4th day. I felt amazing on release day and we even stopped to do a little grocery shopping on the way home.
So, now I am on the other side of Cushing’s. I have had an amazing recovery, while not perfect. My blood pressure has returned to normal, and I no longer have to monitor my blood sugar. No more unusual bruises or rashes. My biggest challenge now is that I have many aches and pains. I was on Cymbalta for a few months. I did not realize how much this drug helped with those aches and pains until I went off of it. I am considering going back on it.
I am truly blessed for many reasons, one reason being that I understand my disease and I am able to go forward and manage it.
I offer the following as my gratitude list: I am thankful for:
- My husband Marty, who has helped me sort this whole thing out, often returning me to the right track over and over again.
- My children, family, colleagues, friends, neighbors, CSRF and all of the pioneers with Cushing’s who have paved a clearer path for us.
- All of the kind, compassionate, caring, encouraging, thoughts, words and prayers offered from everyone.
- Being able to tie my shoes without being out of breath.
- Being able to cross my legs again.
- Being able to throw out the ugly bathtub chair.
- Never getting the facial hair about which I was so worried.
- Being able to wear my clothes again.
- Not being afraid of everyday things.
- Not being depressed throughout this whole journey.
I live in the Chicago area, and surely there must be other Cushing’s patients nearby who might like to get together and share stories. I was listed in the last newsletter as a Chicago contact person. Call me if you want to talk and/or get together.
And, yes, I did go to the reunion. Several weeks prior to that day I discovered Naturally Yours, a fantastic shop that sells wigs and hairpieces. I purchased an amazing hairpiece and I have had nothing but compliments on it ever since. I had a great time visiting with former classmates and I have stayed in touch with a few since then, and, no the old boyfriend was not there.
Life is good.