I lost a few days this week.  My birthday on Friday being the first day.  I remember parts of the day, but was very sick.  I remember my mom and children and husband all getting together and we had lunch. Other than that, the day is a blurr.  I spent most of it passed out in bed. Sicker than I have been this whole time.  Couldn't walk part of the time and ended up using a wheelchair to get to the bathroom a couple of times.  Saturday was the same.  Don't remember but pieces of the day. Pretty sure for a 36 hour window I was out about 34 hours of it with just pieces here and there to go to the bathroom, cry, and hurt.  Very thankful for my family who see me through these times and take care of me.  I didn't eat much of anything. Mainly just survival.

Speaking of eating. My tastes have changed so much that a lot of things don't taste good anymore or they make me sick.  I can't eat chocolate, donuts, cake, and a lot of sweets because they will make me sick.  Plain milk makes me sick, so I can't eat cereal and milk.  I even turned down an ice cream cone tonight because I was afraid it would make me sick.  My snack of choice tonight... ice cubes. I also had some beef broth.  It's kinda funny that my weight is over 300 lbs. and to look at me I am a fat girl who just needs to lose weight by eating better.  My diet today was grape jello, homemade cashew chicken with noodle, beef broth, some pringles potatoe chips, and ice cubes.  There is just something wrong with the fact that I eat like that but have a disease that makes me morbidly obese.  I guess my point is this, don't judge a person by the way they look because you don't know what is really happening with that person.

I am anxiously awaiting tomorrow afternoon.  My husband and I will leave Springfield and stay in St.  Louis overnight.  Then, Tuesday afternoon I get to meet with the surgeon and see if we can do something about this tumor.  I so hope he doesn't think he needs to do a bunch more testing before we just take care of this.  I want the surgery scheduled and done so I can start recovering.  The longer I wait the more afraid I am that I will not recover.  I am still nervous because we still don't know if the tumor is cancerous or not. Many prayers are being said that things go quickly and I can start recovering soon.

So I just realized today that it is 3 days until my 40 birthday.  Amazing how time has flown.  I can guarantee that when I was a little kid my idea of turning 40 was not that I would be fighting a disease or "syndrome" like Cushing's.  My life has definately turned out a lot differently than I expected. Some differences have been good and some bad.  I feel I have come across each challenge and tried to fight and make the best of every situation.

I refuse to give up.  I may have one hell of a battle in store for myself, but I will fight and win this battle.  It is difficult sometimes.  The physical and mental challenges seem overwhelming a lot.  But I keep up and do what I can.  I have learned to slow down.  This is very difficult for me.  Also, accepting that I am not always in control and I have to just "go" with the situation sometimes is very difficult for me.  I am too much of a control freak, but I am learning.  I have also accepted that things don't have to be as clean as I would like them to be sometimes. 

I look forward to the time when I can do things as I want to and have them "my" way again.  But until then, I will accept things as they are and know that it will be ok.  I'm hoping that my next 40 years are filled with many great and joyous activities in my life.  Graduations, weddings, more grandchildren, me finishing my education, and just life in general.  Just living my life and being able to enjoy it with those I love.  That is what I am looking forward to.

Depression goes along with Cushing's.  It is very easy to get discouraged and to feel like it's just bad all the time.  I am trying to pull myself out of the depression.  Trying to get out a little more and get some sunshine.  This is difficult because of the heat advisory, but I am trying anyway.  I had a pretty good day yesterday.  The kids were at grandma's so the hubby and I got to spend the day together.  It was nice.  I miss the kids, but it was really nice to have some alone time with my husband. 

As the time get closer to my consultation with my new surgeon I am getting nervous.  I want the time to go quickly and to have the surgery and get better.  But the thought looms that this surgery is not a guarantee that I will be healed and the healing process can be a very long road.  I know I have to keep positive thoughts, but it is difficult sometimes.  I know that the adrenal tumor can be tricky.  Once they remove the adrenal gland, then they have to get my body to level out my cortisol levels along with the other hormones in my body.  I just want this journey to get started again.  Until I see the surgeon I feel like it is at a standstill.  It makes me nervous to just be waiting for something to happen.  I know this can be tricky.  My body has already showed that my liver is at least 5 times the size it is supposed to be.  I don't want to wait until other complications come along that make it impossible for them to do this surgery.  I want a chance to get better.  I want a chance to live.

There's a crushing feeling on my skull and chest.  It's like someone is standing and has their hands pressed on either side of my skull trying to crush it.  My chest feels like when I stand someone is pressing against me trying to push me down.  The only way to relieve this is to lay down.  That doesn't always work, but it helps some at least.  My legs feel heavy like there are weights and bricks in them.  I am also starting to worry about my bone health.  My right hip is really hurting today and so it the right knee.

I want to know what lesson I am supposed to be learning from all of this.  I certainly don't want to think that I am going through all of this for nothing. So, there must be a lesson that I am supposed to be getting.  Slow down and enjoy life more? Don't judge people by how they look because you don't really know what they are going through?  All good lessons, but is that it or is there some greater lesson?  I just want to know.

I want to get better. I want my strength and health back so I can start living again.  I want to take my children for walks, clean my house, teach my husband how to fish (LOL), and do the little things that are normally taken for granted.  I want to take a shower without it exhausting me and taking over 45 minutes for a basic shower.  I have to take a nap after I take a shower because it is so exhausting. 

Adrenaline rushes are one of the worst symptoms I have experienced so far.  They make my heart race, I get very red, breath very heavy, hard to catch my breath, get very weak, shaky, cold, have difficulty with everything.  I never know when they are going to hit, but when they do there is only one thing I can do.  I go lay down, get covered up, and wait for them to pass.  I have to really concentrate to try to get control of my breathing, once I get control of the breathing I usually go to sleep.  I can sleep from 30 minutes to a couple of hours, it just depends on how bad the rush was.

Feeling a little better now. Finally got a call from the surgeon in St. Louis, Missouri.  I go see him for a consultation on July 31.  Two more weeks to wait, but at least it is an appointment.  He is the only surgeon in the state that can do this surgery.  Since my liver is 5 times the size it's supposed to be then I have to have my adrenal gland and tumor removed through my back.  I am very nervous about it, but am hoping this surgery will go and be successful so I can recover.

It's hard to not get discouraged. I'm trying my best but the medical community is frustrating me greatly right now.  I know between the Cushing's Syndrome and the tumor on my adrenal gland that I will die if I don't have surgery.  I don't know when, but I know that Cushing's is fatal without treatment.  Yet it doesn't seem like the doctors are in any hurry to get me my appointment in St. Louis so we can get this tumor out and I can start my recovery process.  Knowing that my liver is 5 times the size it is supposed to be scares me.  I know that is not good and is really hard on my body.  My weight is continuing to go up also no matter how much or how little I eat.  I eat to survive and that is about it.  My taste buds are off and food doesn't taste good.  My blood pressure and blood sugar numbers are still messed up since the surgery attempt.  I don't know what they did to me while I was in the hospital, but it has screwed up all the progress I was making.

My family and friends continue to be a source of strength for me.  They are praying for me and helping me.  I am very blessed with the people I have in my life.  I will continue to pray and bother the doctors until I get the appointment and surgery and treatment that I need.  My motto is "Never, Never, Never Give Up." So, even when I am discouraged I remember my motto and carry on.

So here I sit still waiting for my follow up appointment.  I went to the hospital and got a copy of my operative report today.  I learned that the doctor tore my liver in a small place but was able to cauterize it.  Funny that was never mentioned to me or my family.  I would think that would be important information I should have been told about.  This whole process just gets more frustrating all the time.  I know the surgeon tried his best to do this surgery, but feel many things went wrong that we were not told about.  It still has not been explained as to what happened or why it happended that I ended up on the ventilator for several hours.  No matter now many times my husband or daughter ask what happened, no one would tell them.  That doesn't make me feel very good because it feels like they are trying to cover something up.

My body feels heavy.  I feel like lead.  My arms, legs, chest, everything feels like I am being weighted down.  I have been trying to do more though.  I have been getting up more and trying to move around more.  It just takes so much energy and so much out of me to do so.  I know I look healthy.  To look at me, I look like nothing is wrong with me except that I am grossly overweight.  If people look at me they think that I just need to lose weight and I would be fine.  As my surgeon told me after I got out of surgery, "You are not this way because you sit around eating bon bons. You are this way because you have a serious disease that has made you this way. We need to get this tumor out of you so you can lose weight and get better."  It made me feel better to hear someone say that.  At least that he has done right.  He understands and knows.  It felt validating to have him say that also.  Like I don't have to be ashamed of my size because it really is NOT my fault.

I know this is a long road.  I have gained 100 pounds and I was already overweight.  I just want my health and life back and really can't wait to get started.  I want to be able to go for walks, play in the park with my kids, go on picnics, camping, fishing, clean my house, and do all the "normal" things people usually complain about.  I want to do those things because I miss being able to.  One of these days I am going to be able to complain about them also.  I look forward to that.  I also look forward to continually loving my family and taking care of them like they have and are taking care of me during this whole ordeal.  I couldn't do it without my support system.  My husband, kids, and my mom are the biggest supporters I have right now. I love and appreciate them so much for all they have done and are doing for me.

I am really frustrated today.  I went back to surgeon for checkup.  They were supposed to have my referral information for the surgeon in St. Louis.  I am anxious for this information because this is supposed to be the only surgeon in Missouri that can do this surgery the way I have to have it done.  No appointment set up yet.  I called the surgeon in St. Louis office and they say they still don't have all the information they have requested. Doctors office here says no information has ever been requested.  I feel like I am chasing my tail again.  So, I called surgeon's office, who is the referral office, and ask them to find out for me where everything stands and let me know what information is needed so I can get the ball rolling and get this appointment.  I will call them back tomorrow to find out what needs to be done.  I am going to keep on them to make sure this gets done.  I don't feel I can afford to wait much longer.  If my liver is already 5 times the size it should be, I can't wait forever for them to decide what needs to be done.  Something needs to be done NOW....

I am also frustrated because I am finding out bits and pieces about my hospital stays.  I guess the nurses where questioning my mental stability and if I had a reason to be fearful at home.  I guess they also questioned Joe on if I was suicidal.  This seems odd to me.  Why would I go into the hospital to have a surgery to save my life and get my health back if I were suicidal and not mentally stable?  I don't understand this.  But hearing this certainly made some of the things they were saying to me last Tuesday make more sense.  They were asking me the same questions. If I had a reason to be fearful and didn't feel safe at home.  I thought it was odd at the time.   But having been under anesthesia and all the emotional stress of not having the surgery go as planned, I just chalked the weird questions up to me not really understanding what they were trying to say.  I am just really curious as to what they thought I was in the hospital for.  I had a surgery that was not completed and then they tried to wake me up too quickly while I was still under way too much anesthesia.  This was not me trying to do something strange and unstable.  This was not my fault.  They are the ones who was botching up my health.  How dare they question my mental stability.  I am going to get my medical records to see if I can piece together more of what really happended since they would not answer any of our questions as to why I ended up on the vent.

Today has not been a good day. No particular reason. I have just felt crappy most of the day.  I was able to convince Joe and the kids to go do something outside of the house.  I feel guilty for ruining their summer.  I can't really do that much and so they stay at home, inside so much of the time.  I want them to be able to get out and live life.  Life is so short and precious.

I called my doctor in St. Louis yesterday to try and figure out when I get to go there and continue my journey.  They called me back and seem like it is going to be a really good experience with this doctor and his staff.  They are still waiting on test results from my endocrinologist here and then they will set appointments up.  Since they know I will be traveling a ways, they want to get everything set up and try to do it on the same day to minimize travel and expenses for me.  I really appreciate that.

I'm surprised that my body is not more sore than it is from the surgery.  I guess since they didn't get to do much, it didn't cause much pain that way.  It has however, cause new symptoms.  I cannot lay flat at all now.  I have trouble breathing if I do.  I have to lay elevated, at an angle.  It is tricky to try and find the right position to sleep in now.  I got tired of the nurses and staff at the hospital continually asking me if I wear a CPAP at home.  They kept telling me I needed to be tested for sleep apnea.  Funny thing is I didn't have trouble breathing while I was sleeping, or anytime for that matter, until after my surgery on Monday. So maybe the fact that I coded and they had to bag me and put me on a respirator has something to do with my breathing issues now? I know I'm not a medical professional, but just maybe that is the problem and not sleep apnea??

My liver is 5 times the size it is supposed to be.  That scares me.  I know that is not good.  Especially since they say it is because it is absorbing the excess chemicals that the tumor is putting off.  It's supposed to go gradually go back to normal size after the tumor is gone.  Everything hinges on the tumor being removed.  My body cannot start healing until the tumor is gone.  It is so frustrating for me.  The tumor was supposed to be gone already.  It was supposed to be a relatively simple procedure that was to be completed Monday.  Now, it's nearly a week later and I still have the stinkin' tumor and the same symptoms and new ones.  I want the healing process to start.  I want to be able to do things with my husband and children.  I want to do simple things like tying my own shoes or getting dressed without it wearing me out.  Taking a shower without help is a dream of mine now.  Sad, but true because it takes so much effort for me to do everything, including little tasks, anymore.

This is me in the ICU about 6 hours after my attempted surgery on July 2, 2012. I was glad to be off the ventilator and lucky to be alive.

This is my wrist.  The red dot is where they had a monitor in my artery and was monitoring my blood pressure with every beat of my heart.  It made for one pretty bruise.

Today was another interesting day in my journey. I woke up with my feet and legs swelling.  I immediately put a call in to my surgeon.  After being on hold for about 10 minutes, I was told the doctor wanted an ultrasound of my legs to make sure I didn't have a blood clot.  So, I called my mom and she came in and took me to the doctor.  It took an hour for the ultrasound, but in the end they said no blood clots.  This was good news.  I was told to just elevate my feet and legs and the swelling should go down.  Unfortunately, this has not worked yet and in fact they seem to be getting bigger at times.  But, I will continue to follow medical advise and elevate.

I have my follow up with my surgeon next Tuesday.  I guess I am going to have to call my specialist in St. Louis to see when my appointment will be there.  I am concerned that when I looked up general information about him I learned that he specializes in endocrine cancer.  I don't know if this is an indication that they feel I have cancer also, or if it is just a coincidence.  Only time will tell for sure. 

I think Monday has really messed with my brain and mental state.  Going in for what was supposed to be a "routine" surgery where I woke up in the recovery room and then went to a regular room was flusterating enough.  To actually wake up in an ICU room on a respirator was terrifying to me.  I could hear people talking around me, but it was very difficult to open my eyes and keep them open.  It was also a very weird sensation to have something down my throat and in my lungs that was actually breathing for me.  I don't know if I will ever be able to fully shake that feeling.  I just kept mouthing "what happened" because I couldn't understand what was going on.  It makes me even that much more nervous about this next surgery.

So my journey took a small detour on Monday.  I went in for my surgery and it was not successful.  The doctor put 4 incisions in and attempted the surgery.  My liver was in his way.  It is 5 times the size it is supposed to be because of all the chemicals my tumor is letting off. So, the surgery was stopped.  Of all the surgeries my surgeon has done, he has never had one he could not complete himself.  This is a first for him.  They took the breathing tube out of my throat and woke me up to talk to me about the surgery.  I was still under too heavy of sedation and I coded on them.  They had to rapidly put another breathing tube in and bag me to get me back.  They then stuck me on a vent for a while.  I woke up in ICU on a vent and as quickly as I could convinced them to get the vent out.  I was on oxygen the rest of the evening into Tuesday.  I was sent home, straight from ICU, on Tuesday.  I still feel like crap, but am getting better.

Since my surgeon could not do this surgery, I am being referred to a specialist in St Louis, Missouri at Barnes Jewish Hospital.  It is the only surgeon in the state that my doctor knows can do this surgery.  My surgery has to be special.  My adrenal gland and tumor will have to come out through my back, instead of through the side.  I am nervous about this but at least I can still move forward with recovery.  It just sounds like it might be a little longer than I originally anticipated.  I looked up information on my new specialist and he was voted Best Surgeon in America last year.  Good to hear that I have the best doctors taking care of me.  I have to call tomorrow for a follow up with my surgeon and to find out details about my appointment in St Louis.  It will be next week.

I am thankful for life. Thankful for my friends and family and all the prayers I know are coming my way.  I am especially thankful for my husband and oldest daughter, Sabriana.  They were there asking questions and figuring things out for me when I couldn't do it for myself.  I love them so much and just wish they didn't have to go through this.

This was me December 2010

Me in January 2011. I was overweight but still felt like I looked ok.

This was me on December 31, 2011.  Still searching for a diagnosis at this point.

This was in August 2011

This was me December 31, 2011. Side view really shows how much weight I have gained.

Notice my lovely moon face.

Me in smaller days. January 2011

In doing research I have learned that 10 to 15 people out of every million are diagnosed with Cushing's per year.  Of those, only 2 out of every million get it because of an adrenal gland tumor.  Most cases are from pituitary gland tumors.  I have a 4.6 cm adrenal gland tumor on my right side.  I am fortunate that it was only on one adrenal gland.  Now I am just praying that it is not cancerous and that this surgery will take care of my problems. 

Cushing's has taken a lot from me.  Besides the physical symptoms of the weight gain of 100 pounds (last time I weighed I was around 335 pounds), dizziness, lightheadedness, high blood pressure, diabetes, confusion, shorter memory, memory loss, stiff and sore muscles, limited and decreased mobility, my independence (I have to have help doing even simple tasks now), and the list could go on and on.  The thing I miss the most is the simple things.  I miss going to the park and playing with my kids, shopping, cleaning house, working, and just being able to go for a walk without it being a real struggle.  Also the freedom to not be in constant physical pain. 

I look forward to doing the simple things again.  I know this is going to be a long and slow process but I look forward to the challenge.  I am very scared of it also.  I don't want something to go wrong and my kids to lose another parent.  As my 9 year old tells me, "then I would be an orphan Mommy and I don't want to be an orphan."  This hurts me to think that in my kids short lives (they are 17, 9, and 5) that they have suffered so much and have so many fears.  They have dealt with their grandfather and daddy both dying.  They have a couple of other relatives that are very sick and it scares them.

I am very scared about the outcome of my surgery, but I know without it the results are definate.  Without this surgery, Cushing's will end my life.  So, I face it and will move forward.  I am scheduled for surgery tomorrow morning.  I will get up early and be at the hospital by 5:30 am.  I will try to keep up with my blog to let everyone know how I am doing.