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. 

A Friend of mine

 5 years ago when me and the kids moved in with my cousin, I started walking the neighborhood every morning. It was my time to get out of my head, I would jog, I would walk, skate, bike. Whatever got me out of the house, music in my ears and thinking about nothing! 

It amazing what you learn and who you meet when you are out walking the streets of your neighborhood every day. You see things you would never see driving down the street. You get to memorize all the house and the yards, which cars belong in which driveways and you really get to to know every little detail if you pay attention. There were several people that I would be out at the same time walking with. Sometimes I would stop and chat, sometimes I would just give a wave, or a good morning. 

Rhonda was the exception. She lived in the corner house and was ALWAYS out sitting on her doorstep on a bench in the mornings. It started with a wave, and then a little bit of chatting here and there. She reminded me a little bit of my dad. The things she would say, her mannerisms, she thought she was funny and would tell you jokes, just like dad. She always checked to see how the kids were doing and always compliment me in some kind of way. Most days I would just wave and say hi, but the times I did stop to have conversations with her, I just feel in love with her sweet, kind and spunky personality. After my dad passed away, it made me want to talk to her even more. She would tell me stories about growing up in Erie, PA, living in a flat with her parents and grandparents. Her little brother named Georgie who died when she was just 3. She worked at the Disneyland Hotel for years in some kind of accounting job. Both of her parents had lived in the house she currently is at, but her mom died of Ovarian Cancer in 89 and her dad died of cancer in 91. She has one friend named Helen who lives in Solvang and is in her 90's and other than a few neighbors checking in on her, she had nobody else. 

I'm sure this is what drew me closer to her. Having no one to help her out and me being left with no one to take care of... seems like a good friendship to have for the both of us. The crazy thing is that every morning she was out on her front porch, she would eat on her front porch, go between her side yard and the front porch and then settle into her car in the driveway to sleep. Her car was full of papers and bags and what looked like to be a LOT of clutter. Because neighbors talk, I was told she was a hoarder and lives in her car because her house is full of all the same clutter and trash. You could tell from her front porch that she kept everything, and it also didn't smell great. It was not an ideal situation for anyone to be living that way. 

Rhonda was not very open about talking about it. In fact, it was even comfortable bringing any of it up to her. But knowing she was sleeping in her car, in her front seat, I knew that all of the outside elements was not making it easy for her. When it was cold and raining, I worried about her staying dry in the car and warm enough. When it was hot during the summer time, she would have random people bring her ice to stay cool. She was smart enough to order amazon fresh for food and drinks. Anytime we made extra food, I would bring her down a container so she could have a hot meal. I know other neighbors did the same. I would always offer for her to come to the house and hang out with us, but she never felt comfortable taking me up on my offer. Until one day, during one of the summers when it was over 100 out she texted me and asked if I would come get her and bring her into the house with AC. You know I was on it! I loaded her and her walker into my car and had a nice comfy chair waiting for her in the house with some cold water. I think that was the first time where she actually decided she was going to trust me. She had a problem with trusting people. She thinks everyone is out to get her, or that everyone has bad intentions. In all honesty, I think she has some mental issues. And that's ok, don't we all? That didn't change who she was or how she was living. That week, I brought her in a few days in a row until the heat wave was over. 

Every day I would think about her and worry about her. At night when we would drive by, you would see the light from her phone in the car. Then the next morning out on my walk, I made sure to stop by and say hi, to make sure she was out of her car and doing ok. She would use her walker to get herself out of her car (it was on a slant in the driveway) and walk over to her bench on the porch. This is not a way to live and it was hard to see her like this. There were a few times that year where she would be gone from her house and I worried about her, but neighbors said she had gone to the hospital and then was in a rehab facility because she would have an infection and need a few weeks to clear it up. But then she would come home and fall back into the same routine. 

One day when I was visiting with her she was not looking great. In fact, she said she had an infection. I was checking in on her pretty often throughout the day. She was pretty weak and couldn't get up out of her car herself, with her walker or her cane. I had Victor come down there with me and help me put a sheet around her and get her up out of her car into her wheelchair. I wheeled her up to her front porch in the shade and stayed for a bit, but eventually left her there and told her I would be back later to help her into her car. She was happy sitting there just watching people go by and doing her thing. It was such a terrible situation to leave someone in, but she didn't want help and didn't trust anyone enough to help her. That afternoon I got a weird text from her that made zero sense, so Victor and I headed down the street to see her. Sure enough, she was not very coherent and was making no sense when she was talking. Something was clearly wrong with her. I had to call 911 and wait for the ambulance to get there. They pulled up to check her out and this was not the first or 3rd time they had come to help her. They knew who she was and that she lived in her car. They asked me lots of questions, but of course I didn't know much. They took her to the hospital and then onto the same rehab facility. Again, she had an infection in her that wasn't being taken care of. 

I was able to visit her in the rehab facility a few times and would sit and chat with her to keep her company. She was doing PT, but this facility was not great. It's all she could afford. They give her meds and every time I would talk to her and ask her when she was going to come home, something else would come up. Another infection, some type of arm or muscles issues. She basically could not get herself out of bed alone. Knowing that she was going to have to move from her car to a wheelchair or walker at "home" made me worry so much about her. They can NOT allow her to go home. She really has no home to go to... did they know her situation and what they were sending her back to? How could anyone know and allow her to leave that facility? She is a grown ass woman and can make those decisions I guess. 

She never got stronger, she could never lift herself out of bed, she can't walk without a walker. She has been in this rehab facility now for over 2 years. I've been several times to visit and she would always tell me, they are going to release me in a few weeks. I would worry about it and then not hear from her. I was her only ride home, so I knew she wasn't coming home without me knowing about it. But that never happened. And I'm so incredibly grateful she hasn't been home. She lies in a hospital bed at a nursing facility, eats three meals a day, gets to be in the AC and watch TV. If you ask me, they suck at taking care of her, her PT is a fricken joke and they were charging her an arm and a leg to stay there. She has been there over 2 years and still isn't walking on her own. She is a very private person so she only tells me so much and I only ask so much, because I know she doesn't want to tell me. 

Lately, the city enforcement has been on her ass about the house. 2 years ago when she first left the house, I cleaned up the front porch. I pretty much sorted and bagged things that she would want to keep and then tossed everything else. I scrubbed the porch down, cleaned it all up and organized it the best I could. Since then, the city has come down on her hard. I'm sure it's all the neighbors complaining, which they have the right to do, because there is a lot going on. In her driveway, sits her beat up car that doesn't work and is full of trash. Her porch is "clean-ish" but still has several things sitting there waiting for her to come back. Her backyard has been overgrown in a crazy way with bushes and weeds. Her side door in her side yard has a big hole in it and you can see the trash coming out of the door. There is a lot going on that needs to be taken care of. 

So because I am me, and she has no one else, I stepped in over the last year and took care of things! Specifically over the last few months. I got her side door replaced. Victor and I spent a few hours cleaning out from behind the door so it could even be replaced. Everything went straight into the trash. It was a really dirty and hard job, but we got it done. Then I bid out for her backyard and got a great deal with a local guy for them to come out and clear it out. What I'm most proud of is hiring a guy to come and clean out her garage. It feels like it was going to be SUCH a big job and looking into that doorway, there was no way that Victor and I could do it ourselves. I again, bid out the job and found a guy who would do it for half the price the other junk company would. It took 2 full days but we got it done. Honestly, it felt like it would never end, but at the end of the 2nd day, we were done. I know, I hired and paid the guy, but then I came for the full two days and helped. I was more trying to organize and help to make sure we got it done in the two days. It was fricken hard work and it was everything you think it is. When you see those companies come into a hoarders house and start to work and move things, it was all of that. But so proud to have gotten it done and then we were able to move the car into the garage so it was out of sight from city enforcement. Done and done! She reimbursed me for every penny I spent to get this done, but I would have paid for it anyway. 

I'm documenting all of this because it was such a crazy experience for me. The entire situation from meeting Rhonda, having a relationship with her over the years, worrying about her, trying to get her to let me help her. Actually making progress with her and cleaning some of it up. This is definitely something I have never done before. I hope to be able to continue to help her. Help her get back into her house. Is that realistic? Probably not at this point, but we have made leaps and bounds of traction so maybe... The house inside is full of all the same things, so an even bigger job for a 4 bedroom house. Below is a before and after picture of the garage. 2 full days and 2 of us it took to do it. I cried when we finally got the car into the garage, it was the biggest relief to have a tiny piece of the place done. For now, it was what "needed" to get done. More to come I'm sure.