Friday, April 20, 2012

Day twenty of Cushing's Awareness: Three months post op.

Today marks three months since I had my pituitary surgery to remove three tumors at MD Anderson Cancer Center in Houston, Texas.  It sometimes seems like yesterday and other days it feels like it was forever ago.   Up until my artery bleed on February 2nd, I truly believed I may have been in remission.  I really noticed good changes in myself.  Every single day I still want to believe there is a chance that I am in remission, but in my heart I know that I am not.

Dr. Friedman has told me he believes I am in remission, but he is also concerned that I am having massive problems sleeping again.  It's been almost a month since I have talked to him and things have drastically gotten worse.  Every week I work on weaning down on my hydrocortisone which is a steroid that I've been on since surgery.  Every week my dose gets lower, yet my symptoms are getting worse.  This doesn't make sense unless I am still sick.  I've suspected it for quite a while, but mentally I am coming to terms with the fact that it's not gone.  I weaned myself down an additional 1.25 mg today so that puts me at a total replacement of 12.5 mg of hydro per day.  I'm hoping within a month or two I can be completely off it so that I can begin the testing process again.  I hate that I have to prove I'm sick all over again, but I am so grateful that I have Dr. Friedman as my doctor.  I know he will never dismiss me and will always allow as much testing as necessary to prove or disprove that I'm still sick.

Why do I think I'm still sick?  Roughly two weeks after my surgery while in the hospital for my artery bleed I started noticing I was having a hard time sleeping at night again.  The previous two weeks I had been asleep by 11 or 12 at night.  That was super early for me.  I would wake up at six in the morning and actually feel fairly decent considering I was still very much in the recovery process from brain surgery.  As time has progressed the insomnia has become so much worse.  I am no longer able to even fall asleep before 6 A.M. and some days it has been as late at 1 in the afternoon.  I will finally fall asleep only to wake back up within three hours and then I do it all over again.  I am so sleep deprived, but I cannot sleep.  I know that my body needs rest so badly, yet I am unable to make it sleep.  During the night I will notice my face turning bright red again and also my lovely "tiger stripes"(striae aka stretch marks) are changing to a bright red color.  My supraclavicular fat pads seem to be getting larger, my belly is getting more firm again and hurts to be touched.  After my surgery my belly became soft and didn't hurt anymore, so this coming back is frightening to me.  My rash on my arm and scalp are back in full force, the swelling is coming back and my cheeks are puffing out again.  I swear I noticed a new dimple in my cheek simply from it being bloated more than it had previously been.  I'm not understanding how my symptoms can actually be worse than they were prior to my surgery, but somehow they are and it's disheartening.

I really wanted to have a happier post for being three months post op, but I do not.  However, today I am feeling a little more positive about it.  I have my days where I am extremely sad, then I'm angry and then days like today where I feel like putting on those boxing gloves and punching this disease right in the face. One day I will get my cure, I may have to have my adrenal glands taken out to do it and I'll be trading Cushing's for Addison's Disease.  However, anything is better than Cushing's.  I know that my life will never be normal, but I know that it can be a lot better.  That is worth fighting for. :)

Never lose hope.  Never.

2 comments:

  1. Shea landybearsmommy@aol.comMay 10, 2012 at 2:28 PM

    OHHH MY GOODNESS!! I also had the brain surgery in January! January 19th to be exact! I'm not better either and I knew it about 3 weeks after surgery. I just didn't feel as if I was going through withdraws at all.....turns out I wasn't. I'm just now preparing myself to have my adrenal glands both removed. So stressful! You are so incredibly strong for all you have had to go through. You are right never lose hope. Hopefully someday you'll look back at yourself where you are now and say "wow how on earth did I get through that?" If you ever need someone who is going through something that kind of the same as you please feel free to email me. I would love to have someone to talk to about all this stuff and my family is not supportive at all. I wish you all the luck in the world! :D Have a great day!

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  2. Wow!!! I am so happy you found this blog! I sent you a friend request on facebook. :) We can do plenty of talking on there. I am really looking forward to getting to know you. There are so many people like us out there and they are such wonderful people.

    I cannot believe you had your surgery the day before mine. I'm sorry that you aren't cured either. :( Stupid disease. It's really the gift that keeps on giving. Looking forward to hearing from you!!!

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