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.