(Caution Pics) Cushings Surgery

Deep Breathe! Deep Breathe! In just a couple days I am leaving from California to Texas to go and have my second pituitary surgery. Drat Tumor! This time its a little easier on my mind and my body because I have done this already once. I don't have the anxiety of the unknown this time.

In July 2014 I had my first pituitary surgery. They found two tumors and got all of it out. I was able to go into remission which was fantastic. 10 months later I had another tumor in a different spot on my pituitary.  Its a slow recovery process. I will be in the hospital for 4 days if all goes well. Then I will be able to fly back home on day 7. I am praying that I go into remission again. From all that I have read and learned your second surgery is 50/50 on that.

Some may think that its an easy surgery because you look pretty normal within a week. That's because its a Transsphenoidal Surgery and they go up your nose, through your scull to the pituitary that way. It definitely beats them opening up your head. This doesn't mean it isn't a brain surgery though. The doctors ARE going into your Brain.

Recovery can be very long. If surgery is successful you will feel like CRAP. This is something you actually want. It means your cortisol levels have dropped down to normal levels of normal ppl. With having high Cortisol it is affecting our bodies in so many ways. Not having it all the sudden is like a body going through drug withdrawal. Except this "drug" is actually a hormone that our bodies have been creating too much of.

My tumor is only 2mm by 3mm by 3mm. Small right? So why would it be a problem right? Well it reeks havoc like nobodies business on my body. I have lost hair, grown hair in weird places, gained weight, lost strength, have horrible insomnia, bruising, mood swings and the list goes on. All from this little tiny tumor. Most MRI don't even show them that's why you have to get a T3 Mri.

Well in less than a week I will be having this surgery. Like I said I have done it before. I still have some pictures from my first surgery so I will show you. I probably wont be blogging for a week or so as I wont want to be starring at a screen as much. I would super appreciate any good thoughts or prayers for remission and a fast recovery. I want to beat this....once and for all!

going into surgery

just out of surgery

3 days later husband being supportive

Insomnia! and Cushings

Insomnia and Cushings. There are many symptoms of Cushings but one symptom that seems to really bite me in the butt is Insomnia. For instance its 4:50am and I can’t sleep no matter how many sheep I have counted or how many times I have tried to be lulled to sleep by my husband’s soft snoring.

I am lucky that I have teenagers and its summer. I don’t know what I would do if I had little kids. I mean I am practically falling asleep when little ones would be waking up. Thankfully my kids are old enough that I usually make them breakfast. Leave it out with a note and tell them when I went to bed so they know if I slept that night or not. I usually see the beautiful sunrise and then start to yawn finally.

I have Cyclical Cushings. I have had two tumors on my pituitary and had them removed at MD Anderson just little over a year ago. I was lucky enough to go into remission for a short amount of time. I am blessed because I became stronger, slept better, lost weight, lost my buffalo hump and all my symptoms started to disappear. Now a year later I am retesting because about 3 months ago I started noticing huge changes again. All my symptoms were coming back and with a vengeance. My new Mri showed a new tumor and every single one of my tests have come back with high cortisol.

So why am I awake? Well I will tell you why. Normal people who do not have Cushings get a rush of Cortisol in the morning to wake them up. It’s your body’s natural response. It’s a hormone that helps you to wake up and to get on with your day. At night time it disappears unless maybe you are feeling stressed because it is the stress hormone. When it disappears you become tired and can fall asleep.

Then there is me. The crazy lady who is cleaning the house at 2am, making breakfast for my kids at 5am for them to warm up, making sure all the laundry is done and blogging because I can’t sleep. Cushies have the opposite happening to them. Cortisol is released at night time so I can’t fall asleep no matter what I do. I have tried to lay in bed for 5 hours and just stare out the window. Nothing. Nada. Nope! Cortisol gives you that surge of energy. It’s like a drug that makes you antsy, angry sometimes, have anxiety, it’s like a thousand volts of energy running through your body or a bear chasing you. It is called fight or flight. It’s not a drug though. It’s something every body creates but my body apparently doesn’t know that it needs to be a part of the in crowd and GO TO SLEEP! Now tell me…..could you just lay down and sleep if a bear was chasing you? If you said yes…..you must have narcolepsy or something.

Anyways because I cycle I have days and I do mean DAYS of insomnia. I will sleep roughly 2-4 hours a night. Let’s be real though I should say I sleep 2-4 hours in the day because my body finally lets me fall asleep around 6-8am. I am blessed because my husband helps out and my kids sleep in when its summer. Once its school time they get up at 615 so I make breakfast and off to school they go. That is finally when I get an hour or two in. My cycle goes about 5 days. Then I crash and want to sleep all day long if I could. I don’t because I have responsibilities but I wish I could.

Hey I am 39. It’s not like in my 20s when I would stay out all night long, get couple hour’s sleep and then go to my 8am college class. I could bounce back easy AND I was doing it on purpose. Now I am 39, not doing it on purpose and definitely cannot bounce back easy ha!

It can get to you too. Not having a lot of sleep would make any saint not so saintly. Trust me I can get cranky even though I try my hardest not too. I have looked at my husband who I love dearly and thought about pushing him off the bed (okay it was only once I thought that but it did cross my mind) because he was sleeping TOO peacefully ha! This is one of the symptoms that I was SO RELIEVED I didn’t have after my first surgery. I almost could deal with the 100 pound weight gain from this hormone, loss of hair, bruising, depression, buffalo hump but insomnia is one of the top three that I just could never get used to and drove me nutso. Kind of like tonight. Day 2 of my cycle and not even happy that I probably have 3 more days to go.

I am blessed that anytime I am tired my husband is more than happy to help out and let me sleep. He understands which is very helpful. I also have tried to turn this insomnia thing into a positive. I can’t sleep and I am antsy. My legs hurt so bad that they need to move a lot. So what do I do? I clean the house. I catch up on my laundry (hey with 6 of us there is always laundry). I read books. I do paperwork. I do a lot of praying for others. I try to at least take this time and use it constructively. I have learned that me laying there staring at the clock is not helpful. I get more upset and that doesn’t help out especially because it’s a stress hormone. Don’t need to add to it.

Cushing’s is a crazy disease! Tomorrow I have my doctor’s appt and will find out my next steps since I have another tumor. I am not going to let cortisol win! I won’t let Cushing’s win! I just won’t. I can’t! I am going to go into this again with a more positive attitude and know that I can and will do this. I am stronger because of all that I have gone through. I also have a very big mouth so I hope that I am able to reach out and help others as well. It’s important for me to use this for good. I am sure though if I was writing this on the 5^th day of my cycle of no sleep that I might have a little different wording of things. I still will be saying though that I want to help others and I want to TRY and stay positive.

Don’t get me wrong. I am scared. No one wants a second brain surgery. I worry about finances from going from California to Texas. I worry about my kids. I worry about my husband taking a week off of work. I worry about a lot. I just have to take those worries though and save them for another day. Its not going to help me out right now. Instead I will just continue to pray that things will work out. Trust in my surgeon and go into remission again. This time forever. If it doesn’t happen……I still have a lot of fight in me and will continue till it does. There is a reason I am going through this and I am going to use it for good. Cushing’s sucks but I am going to beat this! You just wait and see!

 

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I have a BIG mouth

I have a big mouth! So many times this week did my BIG Mouth help me though? I spent 5 days in a hotel this week with WIFI and a Jacuzzi. Sounds divine huh? Well I spent it half way alone, peeing in a jug, getting my blood drawn and not sleeping. When you live out in a rural place having WIFI is a treatJ

I went to stay at a hotel because I was testing for Cushing’s again. A Rare Disease that creates too much cortisol in your body. When I am in a “High” of this thing my body is creating I don’t sleep, I gained 12 pounds in 5 days, I am irritable (wouldn’t you be with 2 hours a night for days?) and my whole body feels like its under attack from stress. I had 12 tests and an MRI to complete so I decided I would stay in Redding to do them. Hey they have a Jacuzzi in the room (free upgrade got to love that) and baths help my super antsy legs during a High. Its important for me to test ONLY when in a high however so I went there to stay so I didn’t have to drive 2 hours there to drop off labs and 2 hours back every single day with no sleep. Ryan and I decided it was a good idea. This time around I told him I could do it by myself because someone had to work and take care of all of our animals. He called and text me all the time to make sure I was okay.

I decided I wanted to do this by myself this time. I didn’t want other people’s schedules to have to change. I couldn’t sleep anyways so being able to bathe or watch tv or yell at the pillow for not letting me sleep is more conducive to when you are alone.  I kept my chin up and told myself I can do this! I can do it alone! I am not scared like I was the first time around because this is a reoccurrence. I don’t need the hand holding as much. My MIL told me she would come up and stay with me but I declined. I get irritable and don’t want to take it out on anyone without knowing. Ryan would have done it too in a flash but I thought it was better for him to continue working. I will need him later for sure.

So, How is my mouth big and how did it help me numerous times? First I would like to say that when you are on day 5 of 2 hours of sleep and going to get lunch and bring back to the Rapunzel tower (what I called my hotel room since I locked myself away) the last thing you want to do is be scared. So I was sitting at a stoplight waiting to turn to go back to the hotel. A guy in a clown’s outfit that was looking pretty jittery started walking like he was going to cross the street. He came up to my car door, started pounding and trying to get into my car saying he needed a ride. I started screaming at him (swear my mouth was completely open screaming) and honking my horn over and over. Thankfully my car doors automatically lock. That scared me so bad that I wanted ruby red slippers to click two times and send me back to my little rural town of no clowns or drug addicts! Who was the first person I called? My husband lol. He told me to call the police. Thankfully this happened on the 5^th day when Ryan got a person to watch all our animals and it was the weekend so he could come up. I am thankful he came up that day. Besides missing him…I secretly was happy to have my protector!

I decided since I was up for days that I wanted to use my Big Mouth for good. I did a couple VLOGS on symptoms and also ones on where to find support for Cushing’s.. Might as well use what is going on with me for good. I really want to help others. It’s the one thing that makes me feel okay about having a reoccurrence and Cushing’s again. I feel such immense support from my Cushies too. They help me on a daily basis. Here are the two links to see the videos that I made.

https://youtu.be/9yBUYYIEkS8 Cushings Symptoms and my Symptoms

https://youtu.be/dfXx18pYInA Where to get support

https://youtu.be/PhIfFwHKChU When to test

I did have fun being able to connect with Cushies online and laughing with things that weren’t medically related. I was excited I had Starbucks! Hey we live 70 miles from the nearest Starbucks. I am not going to lie I had taco bell salad bowl twice too! My son Jackson would be so proud because he loves Taco Bell and I generally am not a fan. I did read a book and do a lot of Jacuzzi tub relaxing to try to help me sleep. I am thankful I have such support from my friends and family. I guess I say to myself I am doing this alone but I am nowhere doing any of it alone. I have a lot of support. If I said I didn’t want to be there by myself at any time I know some people who would have been there right away. People close to my heart.

So the last day I needed to get my Mri. Ryan came down late the night before. We went to the movie Trainwreck. Not a kid’s movie! Dang though it was SO FUNNY!!! I think I have a woman crush on Amy Schumer because she is so so funny. That movie cracked me up. I seriously snorted at the end of it. Yep! I laughed so hard I snorted. I admit it. It’s because my mouth is too big ha.

The weeks been long but its over now. Mri is done and today I found out I have another tumor. I do indeed have to wait for all my test results to come back but at least we have a target. I should be happy I have a target. The first time I was so excited I had a tumor. I know that sounds crazy but it was my way of verifying that I wasn’t crazy and that all these symptoms were real and came from this pesky thing. This time around I am not happy. I don’t want to have to do this all over again. Brain Surgeries aren’t my fav ha! I am going to be strong though. I am not as scared this time. It’s okay for me to have one day of breaking down, crying and being upset. Tomorrow though I will be back on my game! I have great support and that helps me a lot. I have God which helps me even moreJ I have things to look forward to this week so this is going to have to just wait.

This weekend is going to be super exciting. One…..I am going to an amazing ladies wedding! So excited for her. Even more excited that she asked me to make the cupcakes for it. This is a very cute couple that will seriously enjoy happily ever after. Secondly and my best ever thing is….MY KIDS COME BACK! They have been gone all summer at their other parent’s house. I need my teenagers. I love them and miss them so much its insane! I am going to be so excited! I can’t wait for the chatter to begin. I need to remember how to cook for 6 again and not 2 ha! They are my prides and joys my four teenagers and I can’t wait to see them.  There is always a silver lining. I just have to make sure that I keep the positive as my focus. I will too. I am going to beat this! I am not afraid! If anyone should be afraid it should be my MIL (mother in law) because when/if I have surgery she will have to watch all the kids. She should be very afraid haha! I know you are reading this…I love you!

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Cushings....Its BACK:(

I kept it a secret from everyone but my husband for almost 6 weeks. Then I decided I really needed prayer so decided to tell my friends and family. I am going to use my blog as an outlet today so turn away now if you don’t want to hear.

Its back but I am going to fight it.

Cushing’s is a rare disease. It is a condition that occurs from too much cortisol in the body for a long time.  I beat it once! I had pituitary surgery and went into remission 11.5 months ago. They took two tumors out and every day since then I got better. There are a lot of symptoms to Cushings like anxiety, depression, gaining weight even while dieting, insomnia, bruising, hair loss, facial hair growth, libido gone, bruising, high blood pressure, diabetes, buffalo hump, acne, loss of muscle, irritability, pot belly, round face and swelling in extremities. Basically it sucks!

From Novartis.com

I was in remission for about 11 months. I don’t know yet if my tumor is back or if cells were left behind that created me to get better and then 6 weeks ago for my symptoms to start crashing back into my life.

I went after surgery from only being able to lift 10 pounds due to muscle loss to being able to lift 50-60. I slept all night, I lost some weight, wasn’t irritable, bruising and hair loss stopped, Blood pressure went down to normal, buffalo hump got smaller and swelling stopped. It was the best thing I had ever done getting that surgery.

Now it’s back. Thankfully I had the time to be in remission to grow my strength back. I feel like God gave that to me so I could help others, learn more and get better. I am thankful because I can’t imagine going through this after surgery not being in remission as many people do. They have my heart because they are the ones that have to fight so hard.

Let’s be honest now though. I am using this blog as a way to think out my feelings. I am scared. I don’t want to do this again. I don’t want to put my family through this again. I don’t want the surgery again. I don’t want the symptoms again. I just don’t. Life isn’t that way though so I am going to have to do it again.  I am not having all the symptoms yet but I have high blood pressure again, brain fog, losing hair, sleep patterns are crazy, bruising, depression and anxiety and swelling.

Before I started gaining the weight

After surgery losing the weight

I am going to do this though with positivity. I am lucky because I know so much more now about diagnosis and how to get it. I am able to do the numerous tests and know what I will have to go through. I know what lays ahead of me. It might be medicines to control it if a tumor doesn’t show up on MRI, might be another pituitary surgery, Radiation or even a BLA. The one thing I do know is I can do this.

Before surgery

Two tumors out through the nose. (my supportive funny husband)

I don’t worry about myself or another surgery. I worry that I will be irritable and not be able to control it. People don’t understand that cortisol is like fight or flight in a person. It gives you the “feeling” of being chased by a bear. I don’t think that many people would be calm at that point. I worry that I will lose my strength or I won’t be able to sleep. Those were my main things I hated. The weight gain is horrible but it’s something I can deal with. Bruising I can deal with also. Anxiety not so much. Pain not so much.

Again though! I can do this! I have one of the best Endocrinologist in the world. He is the leading specialist in Cushing’s and I fully trust him and will follow what he tells me to do. For now I will put myself in God’s hands and in his hands.

I kept this a secret for 6 weeks. For anyone who knows me knows that is hard for me to do. I wanted to make sure though before spouting off about it. A good friend of mine is out of remission too. I just kept praying for her. Its weird how that happened but in a weird strange way it’s comforting that we can at least talk about it. When she told me about herself….I already thought I was there too but still wanted to wait till my doctor told me before telling the world that this is happening.

I know this is all over the place but I guess I was worried most about my Facebook group Cushings!! Where there are 1100 Cushing’s patients on there that I try to help. They all know I am in remission and I didn’t want to have them not have hope. I was worried about letting them know. Scared actually because I want them to know there IS hope and there is a light at the end of the tunnel. I have grown so much in the last year. I have gained knowledge, found friends, lost friends, knew who really had my back and who I could trust. This disease to me helped me I guess. Helped me to know what was really important in my life. My family, my friends, and my animals.

This time around…I know more. I am going to beat this! I am going to fight until I am in remission again. I am going to stay positive along the way. I may have my bad days but I will have 99 percent more good days. I am going to take Cushing’s and say goodbye to it once again…..forever! I am going to beat this! You watch!

 

If you want to know more about Cushings or see real people with real stories, blogs, videos etc look at www.cushingstories.com . If you have Cushings know there is support out there and also financial help. Email me anytime at Cushingscountrygirl@gmail.com and I will help you in any way that I can!