Hello Cushing’s My Friend, We Meet Again So Soon?

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Hello Cushing’s My Friend, We Meet Again So Soon?

Well, it is December 2011…one year and nine months after my surgery, and my journey still continues. My adrenal axis made its full recovery as suspected just a few weeks after I had made my previous entry. My first major test of my adrenal system occurred when I had some impacted wisdom teeth removed in August. I did not have the procedure because the teeth bothered me, but rather just in case I ever need to take osteoporosis meds. It has been documented that really scary things can happen if you experience jaw trauma while on those meds. I was advised to take some cortisol after the surgical procedure as a “just in case” stress dose even though I had not taken any synthetic cortisol for months. I could tell after the first day that I didn’t need them, so I didn’t take them the second day. As a result, I was feeling pretty good about the stability of the recovery of my adrenals. In October, I totaled my car, suffering only minor injuries…some big bruises and headache for about half of a day. I was cleared at the ER as not requiring any treatment. I felt this was the ultimate test of my ability to produce cortisol. Certainly this was a stressful event, and I never felt the physical sensation of needing a stress dose of cortisol. I was also really pleased when it occurred to me that despite a few horrendous bruises, nothing was broken…giving me hope that my bones might not be in too bad of shape.

One day in November, as I sat eating my lunch at work, I noticed a very slight tremor in my hand. I knew I was both cold and hungry, and I thought maybe either one of those things could be causing my hand to shake. Still, I could not get past the thought that my hands had not shaken since my tumor had been removed just over a year and a half ago. Over the previous weeks, I had been toying with thoughts that I wasn’t always sleeping as well, and even that the sides of my face were looking ever so slightly fuzzy. I had blown off those thoughts as simply being paranoid. Still, as my hand continued to shake, I couldn’t stand it. I left my lunch to go call the doctor and ask for a cortisol test. A blood test was ordered, and I got a call a week later that my results were normal.

As is my custom, I had another strange, unexplainable medical event in November. I had been thinking for a few weeks that something looked strange about my face, that somehow it was not really symmetrical. It seemed to me that my left side of my face just looked older than the right. The difference was very subtle, and I wondered again if I was just being weird. Still, I felt as though if my face always looked that way, I wouldn’t suddenly start looking at myself in the mirror, trying to decide if I looked normal. I decided ultimately that my face had been changing for years, and that perhaps I just had to accept that it might come out looking different than what I am used to. Then, one day, I caught myself in the mirror and noticed that my smile did not look right. It seemed lazy on one side, and kind of crooked. Since it was after normal office hours, and I wanted an answer right away, I went to the emergency room. When I first arrived, Bell ’s Palsy was the first suspicion. During my wait, I felt that it was getting worse. It also seemed to “come and go.” My husband arrived and confirmed for me that it looked worse. As I continued to wait for the doctor to return, it got so bad that I could not talk right. I could feel a severe droop at the corner of my mouth, and I talked like I had a fat lip. Then it would go away and come back every few minutes. Feeling antsy, and I got up to find a mirror and see for myself. Sure enough, I could see my lip hanging at the corner, and there was nothing I could do to fix it. I bumped into the doctor on my way back to the room, and was glad to be able to show him before it returned to normal again. This cycle continued over the next hour. The doctor indicated that it could not be Bell’s Palsy or it would not wax and wane. The same was true for any symptoms of mini-stroke, but he did the CAT scan just in case. He also tested my electrolytes and tested for Lyme’s Disease. Everything came back normal. In the end, he gave my Benadryl to relax my facial muscles, and sent me home. He impressed upon me that it was important that I see my family doctor the very next day, even if it cleared up. My family doctor was on vacation, so I saw a different doctor from the practice. He seemed stumped and decided to do an MRI just because of my history. I didn’t get the feeling that he expected to find anything. I felt more like he was getting the MRI just so we could cross it off the list. In the meantime, I didn’t have any more episodes with my face.

I was at work the day I got the phone call. I was worried when I got pulled out of my classroom to take the phone call. Normally, I just get a message stating that my doctor has called, or even an email from my husband to convey a message. I have never been pulled from teaching for a phone call. The doctor proceeded to explain that the MRI showed a tumor and that I needed to get back in to see my regular doctor and begin the referral process. He hypothesized that perhaps the tumor had been pressing on a facial nerve which may have resulted in the episodes. I quickly asked him if the tumor was large, because I had never had that symptom, nor had I ever heard of it. He told me it was not large and again, I felt like there wasn’t any real rhyme or reason to why it had happened. As I hung up the phone, I knew I had to get my composure together to get back to my classroom. A little boy had been in the middle of reading to me when I left, and I told him I would be right back. Still, as I made my way back down the hallway, I knew I wasn’t ready to go back to my classroom. I went to the guidance counselor’s office and asked her to take my class for a while, and told her what I had found out. She left quickly to take my kids and I sat there alone in her office with my thoughts. It was only a moment before another teacher came in. I knew she had come just to see me when she hugged me without saying a word. I couldn’t help but cry. As I talked to her, my whole body started shaking. I recalled how happy I had been the first time to hear that I had a tumor…that they were going to take it away and everything was going to be okay again. Last time, it was the solution. This time, it was just a problem. What was going to happen with my osteoporosis? The more I talked, the more my cool composure broke down, and I knew I couldn’t go back to my classroom. Miss Beth reassured me that I should go home and not to worry about my class. I snuck off to the computer lab to polish off some sub plans, and go tell my husband the news.

That was a Friday, and on Monday, I saw my regular doctor again. He was in agreement with me that I should go to Johns Hopkins this time, because they have a pituitary center. Had I realized this the first time, I think I would have gone there instead of Hershey. I had always thought of Hershey Medical Center as being the gold standard of a hospital for handling serious problems, so I never questioned it before. I do not mean to imply that Hershey is to blame. In fact, I have ample data to confirm that my original tumor was successfully removed. I just feel like this is my second crack at this thing, and it may be my last chance to take care of it with the transphenoidal surgery. It seems a no brainer to insist on a pituitary center. My first visit with Johns Hopkins will be on January 19, 2012…less than two years after my first surgery. I am currently 108 pounds, size 4 and I have been so for several months. Presently, I have no obvious signs of Cushing’s Disease. I have some patchy dry skin…could it be cortisol related…is it a coincidence…who knows? I am waiting on the results of my 24 hour urine test that will give more specific information about my current cortisol levels. My family doctor said that is what he should have ordered before telling me that my cortisol was normal (the day that I called about my shaky hands). I guess I will give him credit for being on vacation, and for receiving my message second hand when I called and requested the test.

All in all, I feel very lucky to have discovered the tumor early this time. I have so many questions. Will they treat me right away since I have a definite history of Cushing’s disease? Will they make me wait since I am not yet being harmed by the tumor? If they treat me early, can I assume that I will be spared the steroid withdrawl that was so miserable the first time? Is the tumor really the reason that my face started spasming, or was that some kind of coincidence? Could it be that I have two different things wrong with me, and the doctors will miss one just because the Cushing’s Disease is powerful enough to overshadow everything else? Of course, I won’t know any of these answers for three more weeks. What I do know is that God will not let this end badly for me. I have faith that he’s got my back. I am not sure what my journey will be, but I know that a great number of people are praying for me. I believe that in the end, I will be able to point to my experience as an example of how God stuck by me during a trying time, and how only faith in him will be what healed me. I have great respect and gratitude for modern medicine, and I do give great credit to the doctors who have the knowledge and expertise to take care of me. Still, I have seen from my experience that doctors can remove my tumor, but God will be the one who has the power to keep it away. I have confidence that is how my story will end.

FYI…I got the call today (December 27, 2011)…my cortisol is normal…13.3. Normal range is 4-50. Guess that means I am still normal aside from a tumor in my head!

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