How is it that both of my tumor blogs are now related some how to Arnold? I knew this fucker would be back with a vengeance!
Ah, where do I start? In March when I went to Hawaii for a work trip, I noticed that I was sweating more than a normal person would sweat during the entire time I was there. I totally chalked it up to being in Hawaii and the humidity and being the heaviest I have been ever in my life. Just a fat persons problem. I remember one night after an event sitting in my room and just being so upset and talking about how heavy I am and how miserable it makes me. I needed to really get on losing some weight the second I got home. This crazy weight I had gained and now this excessive sweating was just horrible. I was now almost the biggest person in my family and it just felt horrible.
The week I got home from Hawaii I started to kick my butt into high gear. Veggies and chicken and all the healthy things. I started running again in the mornings when I would get Jack off to school. I kept track of my weight on my mirror in the bedroom so every day I could see what progress I was making. I weighed in at a whopping 263. HOLY Hell, how in the world did I ever let myself get that damn heavy? Week after week I started to drop a few pounds. Running and eating and feeling SO much better about myself. Those dang endorphins, it's a real thing. All the way through about May I was doing so well, I was down 19 pounds and feeling really good. I upped my workouts to include more intense for my body stuff. And sure enough around mid May I pulled a muscle in my lower back. I was in so much pain. After about a week of being in pain and not working out I finally called the dr and he gave me some pain meds and muscle relaxers to take at night. I was still trying to walk on the treadmill and keep up my strength and my weight loss. But I watched every bit of the 19 pounds that I had worked so hard to lose creep back on me, super fast, even though I was trying hard to keep it off. But running was out of the question because I was in pain.
During May/June timeframe I started to notice weird things happening to my body. All of a sudden I started to get pretty bad acne on my back. I've never had acne problems, not even when I was younger. I've been very fortunate in that dept, so this was really weird for me. Between that, all the crazy excessive sweating that was happening to my body, I felt like something was up with my hormones. I thought it might be the probiotics I had just started a few months before that, so I stopped them for awhile and I was still just feeling off. I noticed really weird things like the odor of my sweat changing. You know how you smell after a workout, you smell like your own sweat. Mine had changed. It went from one odor to another. Noticeably very different, like from apples to oranges. Normally I get my hormones checked by a blood test a few times a year, so I thought maybe it was time to have that done again. The Dr asked what my symptoms were. Crazy sweating, acne on my back and on my face, crazy hot flashes at night, weight gain even though I am trying hard, weird bruising on my legs that will not go away. These were the rando's I could name at this point.
The new endocrinologist I had a phone visit with July 20, said it's possible it could be early menupuse. But he wanted to send me for lots of tests to see what's up with my hormones. I went twice down to give plenty vials of blood for testing and even had to do this weird 24 hour urine collecting test. Can I just tell you how weird and hard it is to collect your urine for 24 hours, while having to keep it cold... but all my test were done and urine was turned in. July 28 I get a call from the dr to let me know that he thinks that I possibly have Cushings disorder/disease. I was at work that day and wrote the word down on a sticky in the office I was in. He ordered one more test for me to do to confirm that's what it was. So down to the pharmacy I ran. I had to take a pill at 11pm at night and then go for blood testing in the morning before 8.
As one normally does with something like this, google was my best friend, full of information about Cushings. The first few things I found hit me hard. As I scanned the symptoms my mind was filled with more questions. 98% of the symptoms listed I HAD! I was now so sure that I had Cushing syndrome.
I didn't have any random hairs growing on me.... yet. No abnormal fat pad between my shoulders.... yet. BUT I had just about every other things listed.
The Dr explained that it was from the over production of cortisol and the super high cortisol levels in my body that my tumor in my pituitary gland is producing. My tests were very high. The normal level of cortisol is between 3.7 and 19, mine was 27. The over night testing was supposed to be under 1.7 and mine was 21. Now that I had all this information what was I going to do about it? The endocrinologist said, it's time to take that tumor out! That's the only way you are going to be able to get rid of Cushings. HELL YEAH! I was so ready for this thing to come out of my head years ago, this was def what I needed! He referred me to see Neurosurgery and also back to ophthalmology to have my vision checked again to make sure there were no changes there. He also ordered a new MRI, since the last I had was Dec 2021. The next day I got on the phone and called to make all the appts. Instead of booking with the previous neurosurgeon old man I had seen before, I was so anxious, I just took the first neurosurgeon open with Kaiser.
August 9th was the first open appt and at this point I knew I had cushings and I knew the only way to get rid of all of these horrible things that were happening to me I had to get this tumor out of my head! Victor and I sat in the office super anxious to hear from a brain doctor on what the plan was going to be. In walks this 30 year old guy with shaggy hair and at least 3 day old scrubs on. He sits down and goes over my history with us. He opens up my previous ophthalmology report and says something along the lines as being hard to read and understand because of the words they use.... Excuse me? You mean the medical terms they are using? Aren't you a fricken Dr? Didn't you go to Medical School? The entire time we were in the appt this Dr kept using terms like "It's my understanding that.." Everything he was saying def did not sound confident in knowing anything he was talking about. It made me start to feel like he didn't really have much experience in the field. He also then explained that he worked for Kaiser part time, filling in because they are busy and need the help. Then he pulls up the picture of my last MRI in Dec and starts talking about how my tumor is really too close to my carotid artery to do surgery on. In fact he says that it looks like it is straddling it and that's really dangerous and starts to name all the things that could go wrong if they tried to do surgery next to my carotid artery. None of them were good and my head started to tunnel vision into the fact that this was now NOT GOING TO HAPPEN and I would never get this fucking tumor out of my head. This was a feeling I had had before and it was a horrible feeling to have. I've been living with this tumor and all the headaches and vision issues, dizzy spells for years now and I was ready for it to be out. Now this rent-a-doctor was telling me that no one was going to touch the tumor because of my carotid artery. I was ready to get out of that room the second my tunnel vision started. He recommended a second opinion with the head of neurosurgery.
I spend the next few days learning about my carotid artery, where it was in my head, where my tumor was in comparison and what could happen during my surgery if it was nicked. Always more questions that answers and of course my stress level had already been through the roof, this was not helpful to my life. I called and finally got an appt with the Head of Neuro for Kaiser for all of Orange County! I was happy to finally have an appt with a Derek Shepard of Kaiser! If anyone was going to know more about this, it would be him!
It seemed like at this point this was really all I could think of. This damn Cushings. It finally had a name and accounted for everything I was feeling and everything that was happening to me. BUT it still just didn't even feel real to me. Like all of these horrible things I am struggling with were because of this damn little almond size tumor in my head. Between the Pot Belly, the muscle loss, the sweating, the weight gain, the bruises, the acne, being tired all the fucking time and now the double chin I had grown... this was taking a major toll on my body physically, but also mentally.
Here is a picture from me in April and a picture of my face now. Yes I look unhappy in the now picture, but look at that double chin. Triple Chin? It's crazy.
Some of the crazy bruising I am having. I don't even know how I got these ones all down the side of me:
I've always had stretch marks, but they have now turned bright red all over:
I also didn't think I was growing any kind of hair... but then I found these blonde guys on my face on both sides, super grateful they are light and not coming in where I have to shave at this point.
The physical stuff is exhausting to deal with. In July after a long day, I was in the shower and lifted one leg to put up on the side to wash and my other leg just gave out. I feel in the shower and went down on the side of the tub. I took the shower curtain down with me and just broke into tears. You should have seen the bruises that left me for the next few weeks. Another time I was going up stairs and with the muscle loss in my legs I hadn't quite been able to lift my feet as I did before. You know when you are going up stairs and you just walk, because it's in your normal every day routine, you don't even have to think about it? Your body just does it. My foot was not lifting all the way up to make it to the next stair automatically like it would before. I totally beefed it and feel going up stairs. I now have to make sure I am intentionally lifting my foot up step by step (oooh baby) to get to the next step. Every time I use the stairs! Don't even get me started on being tired all the time, the horrible sweating. I am putting on events at work and having to wipe my face with a napkin as it drips in buckets down my face. It's honestly so incredibly embarrassing. Nothing fits around my stomach at this point. Jeans who? This pot belly that I have grown has made me look like such a freak. I went to Universal with my team and was SO excited to get on the Harry Potter ride. We had front of the line passes and nothing was going to be better than riding it first thing in the morning. Guess who got pulled off the ride because the bar wouldn't go down all the way because of how big my stomach was?? Talk about embarrassing. My team was there and all I could do was just get off and make them ride and walk about with my head down feeling probably the worse I have ever felt. This is the biggest and heaviest I have ever been and how in the world did this all happen? I know you are going to say it's Cushings. But mentally in my head it just doesn't justify all that is going on with me. I fell like the ugliest biggest, horrible person ever and some days it just hits me hard. Like I said before, this has mentally got me in a crazy place that I'm not sure I have been in before. Looking at myself in the mirror is just heartbreaking right now.
Back to Dr shit. I had an appt scheduled with Dr. McDreamy (which was in no way correct) but I finally had an appt booked. It was a few weeks out so I wouldn't have to wait tooooo long. A few days before the appt, I got a call that it had to be cancelled because he was now booked a surgery for that day. I was so bummed, now I had to wait EVEN LONGER to see him. So a call in Kaiser got me on his calendar the next week, so I had to wait another week, but that wasn't horrible. In between all of this I have told a handful of people. Only the people in my life who I want to help me ask questions and poke holes in everything to help me get through this. I was not announcing to the world what is happening because I didn't have a lot of answers anyway. The hard part for me has been seeing someone and having them look at me like, WTF happened to her. She just let herself go and is all big and fat now... I went to a birthday party and I felt like everyone was looking at me in such a different way. It had a been about a year since I had seen everyone and I'm 100% sure it was JUST ME and my crazy head... but I look so different now than I did and I just can hear peoples minds thinking bad things about me. Again, I'm sure it's all in my head... but it feels horrible.
Knowing I was going to meet with the Dr, I had a few scenarios that kept running through my head. As I would talk to my friends or family I was able to talk through what questions I had for each of the scenarios. One: the Dr was going to walk in and be like, cool, let's take this bad boy out of your head, I'm not worried at all about your carotid artery, I am a brain surgeon I do this all the time. Or Two: I'm sorry it's way to close to your carotid artery and I don't think it's safe to proceed. Again, all of my worst nightmares happening and no tumor comes out of my head! I have plans to get a 3rd opinion outside of Kaiser to see what another Dr says. At this point I want to make sure that everyone is on the same page and it's not just Kaiser setting their limits on me.
Sept 16th finally arrives and I'm all nervous as hell. High blood pressure because I even get into see the Dr. Weighed in at my heaviest, yet again. Well dressed Dr comes in the room and says hello. Runs through why we are here today. He asked about Cushings and how long have I had the symptoms. Comes over to my back and says, do you have the hump back here and looks and says yep... Looks at Victor and says, how long has she had this? WTF? I did not have that hump for sure... it was one of the only things out of that list that I was so happy not to have. The Dr seems to think I do.... he says that the only thing he doesn't understand and he is confused about is why all of a sudden did Cushings come on? If I've had this tumor since 2018 then I should have had cushings then. But I didn't. He was not all that confident that the cushings was being caused by my pituitary gland tumor. He explained that there are two different ways to get Cushings. There is Cushings disease that is from your pituitary gland and then there is Cushings disorder that is from your adrenal gland. So now there is a possibility that my adrenal gland has a tumor on it also. The MRI from 2021 and now 2022 has shown the same size tumor so it did not grow. If it had grown and cushings came on that would make more sense, but since it did not grow it might be coming from a new tumor... He asked if it were possible that I've had Cushings since 2018? No way... I would have known if things were this crazy back then and for the last 4 years right? That's another story. We talk about the tests he wants me to take to confirm with the endocrinologist where the high cortisol is coming from. We don't want to go in and take out the tumor in my head and then still have Cushings. I'm in 100% agreement with him. Let's be sure of the source before we do digging in my head. I ask about the Cortaid artery and he is like, oh yeah, it's fine, I do this all the time. We go in and we get out as much as we can without bothering the artery and do radiation on the rest of it if we need to. No biggy. Thank God. The head of Neurosurgery has a lot of confidence and made me feel so much better about the surgery should we still be doing it.... He says, let's get you on the surgery schedule, because it's booking about 2 months out at this point and in the meantime get some extra tests to confirm the source.
I get home and email the endocrinologist to let him know what's going on and ask him if he needs to order me anymore tests. He said the already tested for the adrenal gland so it's not that. He will email the Dr to ask a few more questions to clarify what he needs. Thank goodness for Kaiser email. The Dr's have 24 hours to get back to you by email and are soo good at answering me! So thankful for this way of getting things done! So I then email Dr. McDreamy and tell him what the endocrinologist says and now I am waiting on them to talk to make sure we cover all bases before digging into my head. I called surgery scheduling this morning and the Dr has not put in his order for my surgery yet. So I will call back again tomorrow and every day until someone gives me a surgery date!
I know I have to be my own advocate and do the work that needs to be done to move things forward, and that's ok. I have to take the time to make sure that everything is getting taken care of in a timely manner. I just want to be done with Cushings. I need it out of my body. This horrible feeling and depression I am falling into is so incredibly hard to pull myself out of every single day. I have to get up and deal with my body and all the things every day.
Have I had Cushings since 2018 was a very crazy question to think about the answer to. I mean, it's a possibility because I have had some of these symptoms listed for years. But mostly all the big noticeable ones have been only in the past few months. So why all of a sudden did Cushings start to come on? It still has the head of neurosurgery scratching his head.
Yesterday morning I was getting dressed to go into work. I put my hair up and turned to look at the back of it and caught my first glimpse of this camel hump on my back. Talk about a fucking breakdown. This was the one thing that I knew I didn't have. I clearly have been in denial that it was even there...or maybe over the last few weeks it's grown there? You know how you only realize you see things once they are pointed out to you? Now that we were looking for this hump, it appeared. Look at this bad boy on my back. It's the ugliest and worst thing ever. It doesn't hurt and I'm not in pain, it just hurts me to look at it and know it's there. Is it turtleneck season yet?
I know this post is long, but it's pages of my diary, as I always say, I know that no one reads it. I have a bad memory and this is a part of my life that is WEIRD AF right now and I want to have some kind of documentation of this crazy shit that is going on. Where is started and mostly where it's going to end. I always feel better when I can get it all out on paper. Write it down, talk it out. Well here it all is right up until today. I am waiting for the scheduling people to call me to schedule surgery. I am going to put myself on the cancellation list. If there is a cancelled surgery and they can fit me in, even in a days notice, I am IN! Work will be fine, I've got a great team to cover me. Other than that, I'm ready for this tumor to come out and for these Cushings symptoms to lesson and go away at some point. I know it's going to take some time and recovery won't be a walk in the park, but I am a tough bitch and can handle whatever is thrown at me right? Right.
This horrible funk that I'm in right now will go away. This is all temporary. I have to remind myself that every day at this point. Still completely miserable while I am here in the now BUT trying to stay positive that this all work out and IT'S ONLY TEMPORARY.
On a very positive note, I have to say, I have an incredible support team on my side. I'm so thankful for my husband who struggles every day with his own issues but is still here to support me when I need it and in the only ways he knows how. God knows where I would be without my BFF Crystal in my life. Every single day she texts me and calls me and listens to me. Offers up her ideas, opinions and questions. Never judges me and just chugs along in my craziness every day. When I say every day, it really is every day that she puts up with me, the same questions, the stories, needing to just talk out my life. She is some kind of super human to deal with me like this all the time. I wish there were more words than "thank you" that I could think of to say to her. I have close friends and family who check on me and ask for updates and it really means the world that people are thinking about me with all they have going on in their own lives. I know after surgery I will have the small army of people to help me with the kids and to help take care of things for me and I am super grateful for that. I'm just going to leave these pages of my diary on a high note because mentally I needed this for all the horrible and miserable ways I am feeling right now. More to update once I hear about a surgery date and get some more things settled.
