They Will Be Sorry They Asked

 Throughout this entire Christmas break I have been trying to come to grips about the fact that I still have Cushings Disease. This was suppose to be the time of recovery and a fresh start but instead I am still fighting. I have got into some wing dingers with my doctors about how to proceed.  I have been called anxious, depressed, and difficult- YES to all 3.  Sometimes it is so frustrating to have to explain the very disease for which I already have been diagnosed-to the very same doctors who have given me the diagnoses. To explain that living with this disease is very different than seeing it on paper.  So when the questionnaire came in the mail- I responded...

To: (I have omited the doctors names in this blog for privacy)

and all other doctors who cared for me whom I have never met or met under my post operative drug induced state.

Last week I received a questionnaire in the mail regarding the care I received during my recent stay. After reading through the questions and seeing the 2 lines for comments I knew it was not enough space and I should write this letter, something I have been putting off for quite some time.

Let me first say that although I am not cured or in remission I am not sorry for my decision to have surgery. I know that the surgical team, led by Dr. Atkinson did all they could. I am thankful at this time that Dr. Atkinson again made the decision to try, and for that I am grateful. Even though the statistics were against me and cure rates were not on my side at least we tried and that is all I could ask for.

I have also appreciated Dr. Norman's efforts and time since I returned home. By having and open line of communication available, it has eased some of my worries.

With that said, I must also say that I was not prepared for how difficult it would be to hear this news out loud or to actually see it on paper. The thought of never being healthy again is something that I simply can not and will not accept. I must know that I have done everything possible to regain my quality of life.

To all of you, as doctors, as people who are trained to see in numbers and clinical findings it is difficult when someone like me comes along. I am not the textbook case. I may be as far from textbook as one can get. I do not have any of the classic features and realize my labs, although not normal are not off the charts. BUT -the fact of the matter remains- You have removed 2 ACTH secreting tumors from my pituitary and half of that gland and you diagnosed me in 2008 with Cushings Disease which is why I am having such a difficult time with what has been happening since returning home.

Since the time of my second surgery life has been difficult partly due to the effects of surgery and partly because I am again defending the very disease for which I have already been diagnosed. I have been told either directly or indirectly I am anxious and/or depressed -which I agree, I am, but it is not because I am an anxious or depressive person, but because of the situation I am in currently. I am lacking a cure, a solid plan, or a reason for what is happening. The things I need , if for no other reason than to have hope for my future. And for that yes I am anxious and I am depressed. I am sure you are all aware of the statistics that relate to cushings disease and I am sure you all know what I should look like, act like ,or what my numbers should be but what you are not understanding is that no diploma, no degree on the wall and no amount of statistical research will allow you to know what living with this disease feels like on a daily basis.

While at times you have told me to become more symptomatic, to have higher labs, to talk with counselors I still have to live my life. I still have to be a wife, a mother, a sister, a daughter and I know, statistically speaking, people with this disease loose their quality of life no matter what symptoms are occurring and what their numbers say. I do not agree that you can have LESS Cushings. It is either there or not and I would hope this would be confirmed by my past laboratory findings. I sometimes feel like if I were a 500 pound diabetic this would be easier but I am not that way because I am aggressive in obtaining treatment, I would not let myself get to that point. In case you haven't noticed, the words no and can't and wait make me fight harder because saying no and wait to me only mean I am losing more time with my kids, my family, with my life.

So in case you are wondering what my life has been like since surgery so you can understand why I might be a little anxious or depressed about my future and to know why numbers and symptoms are different that actually living with this disease. I will tell you:

Every day my body aches. I feel like I have the flu all day.

My muscles are weak and stiff, especially my calves. I walk like I am 80 years old. Getting off the couch requires an all out effort involving all family members including the dog. Because even the smallest tasks are difficult, my children have become my caretakers for even the smallest of tasks. Things like opening up a bottle of soda which by the way, is a full time job alone, considering the amount of liquid I consume in a day. These are tasks I should be able to do, but can't. After opening the 6^th bottle of sprite yesterday, my 7 year old asked to be fired.

As a result of this relentless intake of liquid, I am up every night, all night in the bathroom. It is usually around 2 AM when I weigh the benefits and drawbacks to Depends undergarments. The labs here say everything is normal. I have to disagree. Normal does not include coming home from the grocery store with 60.00 worth of soda and no food.

Hot flashes- not the mild, I think I need to take off my jacket and fan my face kind, but resisting the urge to strip down naked in the checkout line at Target.

No energy. It takes every ounce I have just to shower. Which I only consider doing on occasion since surgery.

I AM anxious and I AM depressed. I just disrupted my entire families lives. I just had a huge surgery and spent a month in bed, only to find out I still have this ugly disease. Couple that with the fact that I have had inconsistent care from my doctor here and I would say being anxious and depressed is what one would expect.

I also feel that to understand how much Cushings disease has taken from me, and how my life has changed- you must understand what my life was like before it entered my life and even during the period of remission.

I was fun. People actually liked to be around me and on occasion, I was considered the life of the party. I was always willing to try new things and put myself out there. I smiled, I laughed, and generally had a good time.

I was smart. I graduated with honors with a double major now I struggle to spell the simplest of words or compute fifth grade math problems.

I was physically fit. I ran races, participated in boot camps, enjoyed kickboxing, lifted weights. I played outside with my children.

I had a career. I was a teacher- I could handle the rigors of the profession. I won awards for my teaching and accepted some challenging positions- now there is no way I could handle the demands of being a teacher again.

I was an attentive wife. I ran our household with precision. I was organized, efficient and my house was clean. I was even able to cook an occasional meal. I gave my husband the attention he deserves.

I was a better Mom. My kids could count on me to be at their events, to volunteer in their classrooms, to help with their projects. I was able to give my kids the time and energy they deserved. The time I am loosing with them because of this disease can never be recovered.

Moving forward is difficult and something I do not yet have a grasp on.

I am confused. I am upset. I am sick. The one thing I would like to make perfectly clear is that I am not sick BECAUSE I am anxious. I am not sick because I am depressed.

I am anxious and depressed BECAUSE I am sick, because I do not have answers, because my life has been turned upside down and because I simply want to get my life back.

I am very aware that I do not present with Cushings in a way that is either typical or normal. That has become very clear to me. But here is what I do not understand. These are the questions I would like answered so that I can move forward in the best way possible.

We know that 2 ACTH secreting tumors have been removed from the right side of my pituitary. We also know the right side of my pituitary was removed. We know, based on numbers I am not in remission, I am not cured.

Is there any other explanation, other than Cushings Disease, for these tumors?

Could the reason for no cure be, the left side, or diseased tissue around my carotid artery, or in the cavernous sinuses?

Is there a possibility that there is a tumor somewhere other than my pituitary?Before I make any more decisions or a decision that is life altering, I need to know- that we have explored every other option, possibility or diagnoses- as remote as they can be, knowing that my next step will be life changing and not something I am going to do without knowing- it could be NOTHING else. Is there any other tests to be done for the adrenals to test for functioning, etc.? Is there any possibility that a CT scan would not show everything? Is it possible that there could be a tumor hidden in the middle of these glands going undetected? If there is further testing that could help in these areas, I would like to explore those possibilities before I consider any more treatment.

With ALL of this said, I hope that we can move forward in figuring out the best way to beat this. I am sick. I am sick of talking about Cushings. I am sick of researching Cushings. I am sick of writing about cushings. I am sick of being sick.

I hope together we can exhaust all other possibilities before moving forward with something that will ultimately exchange one disease for another but one that I will move forward with if there is a chance at regaining my life.

Again. Thank you for sticking with my case, as difficult as it has been, I want you to to know I am grateful and thankful for all of you!

(See- 2 lines would have never been enough!)

Mary Kahl