Pituitary Surgery for my friend, and remembering mine.

My good friend Heather is going into her pituitary surgery tomorrow morning. I have all this excitement for her because I know what can happen, the changes that can happen for the better, once the tumor is out. I had pituitary surgery 3 months ago with the same Neurosurgeon at the same hospital. I am so proud of her and how far she has come and how hard she fought listening to her body. Thinking back about the surgery it really does amaze me how they go up the nose to get a brain tumor out. Although I am sure she is scared of pain or of complications or whatever thoughts may run through her head....I try to keep it positive because it IS! This surgery changed my life. It made me go into remission. Did the first couple days suck because of nose packing's? Well yes....BUT it wasn't nearly as bad as I thought and was so manageable with a little pain medication.

hour before surgery

My life changed that day and I am hoping for my friend her life changes tomorrow for the better. We both know some ppl who have had more than one surgery BUT we know SO many more than have only had one. Either way, whatever happen, I am going to be there for my friend. We met through a Cushings website. Its interesting how you connect to someone you haven't met in real life. We talk about it all....even our kids, normal lives, daily frustrations or joys. This disease may be debilitating and suck (sorry but it can) but its amazing the blessings that come with it too. So many blessings like finding good friends!! 

Tomorrow she wont be feeling the best but I have shown her my picture collage which I hope helps her and others. Because you see how fast you go through it. Heck I am 3 months post op and no one in my town can tell I ever had brain surgery. This can be a good and bad thing. Good we don't have the scars and shaven heads but bad because well you don't LOOK like you had it so ppl don't know. It is BRAIN SURGERY so you do have to take it easy for a long time. Recovery is key

After surgery

Nose packing, its out day 2-3 though

After just a couple days her nose packing will be out and it will be a breath of fresh air. It will be such a relief. Hopefully by this time she has crashed. Not crashing like not breathing and heart stopping (nurses say this is crashing). BUT Cushings Crashing! Which is when your cortisol levels plummet. It will make her feel like crap, but this is a crap we want her to feel like........................it means remission.........! I was lucky enough to crash on my first surgery. I felt like crap but let me tell you it was the best feeling in the world because I knew what it meant. Tomorrow I am sending her flowers. And as my BFF did to me the card will write "I hope you feel like crap. xoxo". 

packing out!!!

great support from hubby

 I pray for her that her surgery goes well. I pray she finally sleeps. I pray she feels like crap because her cortisol crashes. I pray that she is not scared but hopeful. I pray that she feels a difference in her symptoms as soon as a week even. I pray her brain fog leaves. I pray her family lets her rest and that her support system understands its going to take months to recover if not a year. I pray its speedy for her. I pray she goes in tomorrow morning calm because this is something she wants. I pray most for remission that never leads to another tumor. I pray....I pray....I pray for all those things that I wanted for myself and for all the things I want for all the cushies I know. And if this doesn't happen (which i think it will) I pray she knows that we are all here for her. That its okay and we will be there everyday after that to get her back in for another surgery. I feel in my bones though that she will go into remission.

two weeks later

less than a month out from surgery

Remission is still a long journey but its the uphill side of things! Its that light at the end of the tunnel. We aren't all better just because the tumor is out. Slowly though we will get better, start to see the glimpses of our old selves. Its a magical moment when those things happen, when we see the difference. And remember Heather that when you are in remission that you will still doubt and worry because you never want to go back BUT as I had to learn...........YOU ARE IN REMISSION TILL YOUR NOT!!!!  Go get em girl!!!

My Cushings Journey

Oh where do I begin? Lets start with I didnt even know what Cushings was and lets back track to the beginning....

The day I got diagnosed was my 6th time in the Drs office for Bronchitis that year and I had had walking pneumonia also. I went in and cried to my DR that I am barely eating, gaining weight, I am not sleeping but 2 hours a night and that I feel like I am going crazy and depressed, my body hurts and I am bruising all the time. He looked at me and said, "You have Cushings I bet". I looked back at him and thought is this man crazy? What is Cushings? He looked at my neck and said I had a buffalo hump, looked at my stomach and saw my stretch marks (straie) and looked at my food log and saw I was only eating 1400 calories a day and had gained 80 pounds in 1.5 years and was still gaining. 

NOW LETS GO BACK...

I had a hysterectomy 3 years ago and felt like I had hormone imbalances every since. Actually I felt like I had them before that even, but I always decided that the weight gain, the hair on my chin, the loss of muscle, the bruising, was all because of hormones from the hysterotomy. WELL it WAS from the hormones but not from that. I went to DR after DR after DR and they said my estrogen, testosterone etc was fine. Or they would give me a pill for depression or more estrogen to cure my hot flashes, red face etc. The depression pills never worked for me. I even went to a Dr that gave me more estrogen to take and then had their clinical psychologist call me to see if I wanted to come in to see them and talk because I "had bruising, cried a lot, was 37 and must have a bad home life". That made me so mad!! I wasn't getting beat! I left that clinic and went to another one. It was just meant to be because thats when my MD said to me that I must have Cushings. Look at my Buffalo Hump....

After he said I needed to test he set me up for two tests. An 8am cortisol blood draw and a DEX test. One came back positive and one negative. Then my Dr said well maybe not. By this time I had looked up everything I could on Cushings and started researching. This is also where I saw my co bloggers Vans video on Cushings which to this day she is my rock-star! My Dr referred me to two endocrinologists and they both turned me down. I researched Cushings specialists and decided to go to who I thought was the top endocrinologist at the time Dr. Friedman. He listened to me. I tested a lot!! Tested wrong at first even. Tested when I felt bad and I should of been testing when I felt good (on a high). So at first some of my tests were coming back normal because I would cycle. After learning more and figuring out my symptoms and when to test....they started coming back high, high and high. I went in for a MRI and they saw something that COULD be an tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurosurgeon saw one he thought on the right. It was very confusing but  I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston at MD Anderson.

Once I was ready for surgery it could not come fast enough. I wanted to get rid of the tumor and was hopeful to get back to a normal life. By the time my surgery rolled around from the first time I even learned about Cushings my muscle wasting had me only able to lift about 10 pounds. I still wasn't sleeping. I was angry at nights and had so much anxiety that my foot would tap tap tap all the time. I was bruising if someone touched me hard or bumped me and most of all I was depressed because I felt as if my family would do better without me there. I am a mom of four teenagers.....it was hard when I couldn't do things for them. And I felt bad that my husband was really picking up the slack. I didn't even feel like ME anymore:( I wanted ME back. I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. BUT NOW I HAD THE CHANCE!!

July 25th 2015 I had my surgery.   I was ready to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband by my side and I waved at him and said "see you on the remission side". When out of surgery we were told that they had found TWO tumors that were connected underneath the pituitary and he felt they had gotten everything out. I was relieved.....

On our next blog is the video of a day before to 2 weeks after slideshow of pictures of my surgery. I am now 2.5 months post op and in remission! I take it day by day because recovery is hard and I have to remember that I am not going to be ME in one day! But glimpses of ME are coming more and more! I feel happier, I have lost 23 pounds, I am sleeping every night and all night long, I am not bruising, my brain fog is so much better and I am happy to be on the flip side~! I am still getting better day by day! 

Please feel free to email me at anytime at Cushingscountrygirl@gmail.com or I have a Facebook group called "cushings!!" that you can join for more information and of course check out Vans other blog onedelicateheart.blogspot.com 

 

cushings surgery pituitary