11 down 19 to go

Crazy to think that 20 days ago I had no idea what I was getting myself into and now here I am 11 treatments in and it's flying by! 

While you never really know if you are making the right choice, it's just stuff you gotta do and then you live with the consequences right? 

Radiation started Thurs Nov 14, 2024. Day 1 and day 2 were a bit surreal. Kinda an out of body experience. They gave me a very warm welcome, explained everything to me and then we got right to it. This is the mask that was made for my face, molded from mine and they strap me into it every day. 

Each day I come in, I am assigned to the room called "Tranquility", they verify it's me a few different times and then I lay down on this table. I put my head into the back of the mask, they position the top of the mask over my face and they lock it down onto place. It's secured to the table so I don't move. It's kind of a trip because it definitely feels like I'm being strapped down to the table. But my body is not and it's just fine. Most days there is music playing above in the room in general so I try to focus on that, close my eyes and just let the machine do it's thing. This machine below moves around my head. It goes for about 10 minutes, moving around, making weird sounds, and then it's done. 

This part of the machine is normally above me and has that glass on it, so I can see myself when it starts and all I can see are my eyes and the mask, and it's kinda freeky. I def resemble Jason in this mask. Also, there are so weird lights shinning down on the mask so it illuminates in a weird way because it's white. I do love that this part of the machine has stickers on it, I'm sure it's meant to help distract people from what's going on. 

It's all becoming somewhat routine now. I'm trying to wake up early enough to get a 30 minute walk on the treadmill in, shower, take the kids to school and then be there by 8:30! Lucky for me, the hospital is only about a 7 minute drive so it's super easy. The Radiology department has it's own parking lot so there are always spaces to park. 

Before I started the process they told me that the main effects of the treatment would be being nauseous and being tired. Maybe some hair loss. So far I've only been sick a few times. The first time was very surprising, came out of the blue, walking through Target, two days after I started. Then the same week I had a pretty bad morning with it. But I have to remember it passes. I have some chewable pills I'm taking to help. I think that when my stomach is empty is when I am feeling that, so I try to keep a little something in my stomach at all times! I can definitely feel the being tired part. Come 5pm and I'm ready for a nap. This time change isn't helping either. But so far, so good. I've had tons of people texting, calling, sending gifts. I always feel like I have such an amazing village who cares about me and checks in on me. I appreciate each one of them so much. Even just a simple text asking how it's going, reminds me that people care and are good! 

I feel like the end of December will be here before I know it and my treatments will be done! Good news on the cortisol levels! I took a test last week to check my levels since I started meds 6 weeks ago! My levels have dropped from 739 to 400! Although 400 is still really high, we are trending in the right direction and I will take that as a big win!!!! I was at about 400 when I had surgery 2 years ago at the peak of my Cushings with all the symptoms, so I know I have a ways to go, but knowing that taking meds for 6 weeks has dropped my levels makes me very happy and hopeful that between the meds and this radiation, it going to work! 

All up in my feelings

I would say it's been a rough week. This world continues to be a shit show, but who has time for that? There is a lot of anxiety leading up to radiation starting next week. You know, am I making the right move? How will radiation effect me? Already the last few months I have felt so weak, Cushings continues to take away so many things from me. So many symptoms from Cushings, a lot of them people can't see and I try to push through it that it doesn't show. I'm on two different medications. One for high blood pressure and the other to help lower my cortisol levels. Here is a list of all the things my body is going through, has been going through and will continue to go through. Which symptoms are from which thing you ask? Pick and choose the day or the hour at this point. 

Cushings disease - A rounded face, a fatty hump between the shoulders, pink or purple stretch marks, acne, excessive facial hair, easy bruising, hair loss, thin skin that heals slowly, and bone loss. High blood pressure, type 2 diabetes, and unusual weight gain, especially around the belly. Muscle weakness, difficulties with memory and concentration, anxiety, depression, severe fatigue and backache.

Lisinopril for the high blood pressure (caused by Cushings)  - side effects include, dizziness, cough, headache, fatigue, blurred vision, diarrhea, stomach pain, light headedness. 

Cabergoline, to help bring down my cortisol levels from Cushings and the tumor - side effects include, dizziness, nausea, headache, constipation, cold sweats, fever, Hallucination, lower back pain, stomach pain, and my favorite.... increased sexual urges or other strong urges such as gambling.

Three years ago I was so miserable not knowing what was wrong with me and I pushed the doctors to figure it out. Finally when we tested for Cushings and it came back as that, we knew we had to get in there and get that tumor out! I felt such relief for a year and a half. Most of my symptoms were gone after surgery and I was feeling so good. To be back in this spot today has been really tough for me. Physically this is hard to deal with, but I'm good at not showing how it all feels on me. Mentally it's harder to deal with. Wanting to feel good. Not wanting to show I feel bad. Wanting to make sure I am getting up every day and being strong, walking, riding my bike, working out. Gotta do something every day so I don't feel so fat and lazy. 

This week I had a special MRI to take better pics of my brain. The tech had to find a vein to give me contrast, he had to poke me three times to find one. I've got bruises on both of my hands/wrists from them. They hurt... It's just stupid shit on top of stupid shit I am already dealing with. My body is at war with itself right now in so many ways, some I can't even type here, but I am dealing with it and trying not to complain about it. Hence this post that no one will read....

More times than not, I just want to crumble. Crumble into a ball and stay under my covers all day. I want to lay in bed and not get up. I want to just lay there and maybe feel. Feel whatever. Cry maybe. I do need a good crying session soon. Maybe I can squeeze one in after dropping the kids off at school in my car! I just don't want the judgement. I don't want the self crappiness I'm going to feel if I don't get up and do whatever it is I'm supposed to do. Not going to lie, this is a hard time in my life right now that is hard both physically and mentally. 

I start radiation next week and have no idea how that's going to play into all of this. It's expected to make me tired and cause nausea. Could be some hair loss. Where does any of that fit into how I'm already feeling? My body and mind are going through so much. I have to remind myself this is temporary... BUT that's what I said before. And it came back again. I will continue to remind myself it could be a LOT worse. It is not cancer, I am not dying, this will go away at some point in my life. I am grateful for that.

A very wise co-worker, turned friend told me this week.... when I start feeling like this, remind myself to say "for now". This is how my body is feeling, for now. I'm too tired and hurt, for now. FOR NOW. It really does make so much sense. This is all temporary, for now. It will turn out OK, and next year I will be typing out a blog that says how good I am feeling and what great progress I've made in a year. But also FOR NOW that's not how I'm feeling. 

Its hard to talk about because I feel like such a complainer to anyone I am talking to. No one makes me feel that way, it's just how I think I sound. But it's all real feelings. I'm lucky to have the bestest friend in the world who will sit and listen to me for hours if I need it. She asks me every single day how I am and then lets me vent and say what I need to say and never complains about it. She is the only one I can be 100% honest with about how I am feeling without any kind of judgement and I am so grateful that God sent her into my life. When my mom left this earth, she was replaced with a best friend he knew I would need. Someday I hope I can be the person she needs just as much as I've needed her. 

Told you I was all up in my feelings. Pages of my diary. It helps me to get it all out of my head and onto "paper". But I type much faster than I write so here it is.

I'm back

After a year and a half after surgery, this mother F-er is back. In September I started to feel a bit off, I started to sweat more than normal again, my face started to break out, I was having some major anxiety about random stuff I had never worried about before. I was constantly hungry, my hair was coming out more, my Mud Water drink for sleeping had stopped working and I started to have that weird upper back pain again. I knew what was happening to me, so I email the dr and ask for some new testing to see where my levels were at. 

Booked an MRI for when I got back from Bali and started some urine testing to see where my cortisol levels were. Sure enough, they were fricken HIGH. My cortisol level right before surgery was 442/mcg, after surgery it was 16/mcg and then when I tested in Sept 2024 it had spiked to 729/mcg. We are talking almost double what it was before surgery two years ago. Tumor also is measuring about the same as before surgery... Cushings is back in full effect with a vengeance this time. 

First thing I did was confirm with all the tests and my endocrinologist my levels and that Cushings was back. Right away he put me on a medication to help start to bring the levels down. It's called Cabergoline. Started it out slowly and then after a few weeks started to take the entire pill. I haven't felt too many side effects from it. Def more tired and getting some dizzy spells, but if you look up the pill, just like those crazy commercials, there are a whole bunch of side effects that can happen. One being, a compulsive urge to gamble. Gotta love crazy drugs, but, so far, so good. 

Then the second call was to the surgeon. He basically told me that he was not going to recommend surgery again. It wasn't very successful the first time, because of the place in my brain it was and he doesn't think they should "try" again. Of course that did not sit great with me. I wanted a second opinion on that. 

The Neurosurgeon I had an appt with in LA said that if there was another surgery that they would need to be more aggressive in surgery. He didn't say no, but he didn't say yes. He said that my case would be reviewed by the "Tumor board" and see what they board would recommend. 

The Tumor board was made up of about 15 specialists for tumors. Neurosurgeons and Radiation Oncologists. All the smartest people in OC/LA counties were going to review my case. It felt like something out of Grey's and I was excited this was happening. This was WAY better than just a second opinion. Dr. Choi, the Dr who did my first surgery was in the meeting as well. The board agreed that the right course of action was not going to be surgery again. There is too much risk involved, its too close to my carotid artery and deep into the cavernous sinus to get too. They still wont be able to fully remove it. The risks outweighs the likelihood of success without complications and I'm too young to take those risks. I'm only 44 and if they mess up my eye sight or nick my carotid artery... it's something I would have to live with for the rest of my life. I'm not gonna lie, I was honestly hoping they would just go in and cut the whole damn thing out this time. It would totally be worth having another surgery. Because then it would be done and over with, and I'm not a patient person. BUT that was not the case, and I'm grateful they are looking out for my wellbeing and not being un rational like I am right now. The final recommendation from the board is Radiation Therapy. 

My appt with the Radiation Oncologist was originally booked for 2 hours and I was so confused as to why we would need two hours. I asked Victor to come with me because I feel like I needed some back up brain power when the doctors start talking and giving me all this info. Plus, then I would have another set of ears to hear and understand all that was going on. The Dr took an entire hour of our time and explained the process, the why behind it and how it would work. When we were done with the appt, we barely had any questions because he was SO good at explaining everything step by step. It was really nice and I really respect that this Dr did his research and knew everything about my journey, my family history and had a great plan forward! LOVE YOU KAISER! 

I would need to start the process by getting a better MRI with a machine that is more precise then the normal ones used. There would be a planning session where they would make a mold of my face to have each time I went in for a treatment. A CT Scan, and then they would take all of the images of my brian and make a 3D image on the computer. This would be what they use each time I went in so they could calibrate it each time. I can NOT wait to see this 3D image of my brain! 

My treatments start Nov 14th and will be 5 days a week, 30 minutes each day, at the hospital down the street, for  6 weeks. The Dr explained that some of the side effects with be, fatigue and being nauseous, eventual headache from being inflamed, possible hair loss from the radiation but minimal. Fatigue will build within the 6 weeks, I should be able to drive myself every day but some days I may be more tired than others. Some other random things to note, Radiation will be successful in 50-80% of the time. 

The point of radiation is NOT to go in a blow the tumor up and get ride of it. The purpose of it is to stop the secretion from the tumor and to stunt it's growth. It's needs to stop growing and stop leaking... 

Working with the pituitary gland and the amount of radiation that it will be exposed to can cause other issues down the road. One being thyroid issues that can be controlled with meds and of course with putting Radiation into your body, it can cause cancer down the road. But like everything, there is risk. This is the least amount of risk for hopefully the biggest bang! 

This is going to be a very slow and steady process because of where the tumor is. 6 weeks of treatments, each time, very precise and slow. I will need to stay on blood pressure meds and cortisol meds while being treated to keep everything in a steady state. Next week I have my special MRI and my face mask mold making. Should be interesting.

How am I feeling about all this you may ask. Oh, the pages of my diary with zero readers... I'm having feelings. More to come as next week starts. Pray for me.