Thoughts that are coming to mind. After going to Cedars to see the head of neurology it is very hard to not feel defeated. It is just going in a loop of all the same things but, no answers. This disease started when I was about 15 and didn’t really become bad until I hit closer to 24. I’m 26 and all the tests, imaging and procedures are the same. There is a weird switch that happens when you go from child disease to still having it unanswered as a legal adult. It is a switch between being a child and being an adult but also not really. I’ve lost so much because of this disease and can’t seem to get past the feeling of loss. It’s hard for people to remeber you as an athletic person but now you struggle even stepping up a curb or walking on uneven ground. It’s hard to be happy for friends because you want what they have. 

Hyperberic Again…

After finishing chemo a year ago, I just had my first hyperberic treatment yesterday December 12. It is in a new machine that I’ve never been in or even heard of until yesterday. It is a hard shell hyperbaric which is less scary than the soft bag hyperberic. It’s hard to get into and I had to be lifted out but, it is suppose to force oxygen to the brain to heal it. Instead of a walkie-talkie the chamber has an intercom that you can call a nurse on. It goes to a phone that rings and you talk to a nurse. Now I’m doing the treatment of a new pill, shots, and hard hyperbaric that will hopefully heal my brain and make my life more normal! 

Fitness Routine

To keep myself strong for the last few months after chemotherapy (and the last 8years) I have been going to my trainer in Moorpark. We have been focusing a lot more on strength and balance. A strong core will give me better balance. My biggest struggle is with balance and mobility. The stronger I am, the more balanced I’ll be. We can do a few simple exercises to accomplish that. Here are a few pictures and recommendations for exercises with limited equipment needed. 

 

We did twists on both sides with resistants, squats with weight (15reps x3) , over head press (20reps x5), and planks (not pictured). As always you need a great play list and someone to help motivate/ push you. 

 

SUMMER 2024

Now that I’m done with chemo and have been for a little over 9 months! I have been enjoying summer 2024. Last summer was spent doing chemo and feeling crappy. So this summer I’ve spent it outside! I went to a lake, to the beach and to a concert! We went to my cousins college graduation party the first of June, then Shaver Lake and soaked up the sun and fun water sports! My younger brother got tickets to Cage the Elephant in April, and the time had come for us to go and I enjoyed that with him and seeing his eyes light up at his first concert! May and June were so fun, but July was most fun with fireworks and the concert! It has slowed down Towards the end of July with a funeral and back to school but August will bring some excitement with BBQs, seeing family, pools and the beach! But back to work and reality. 

What’s been going on!

After finishing chemo in October of 2023. I tried to do some fun stuff on days when I was feeling better. I went to see a few different doctors, I slept a lot, one of my best friends brother got married. I went to an enterprise event, I saw family for Christmas, and I started back to doing a book keeping class threw Ventura county adult school. I keep thinking I don’t do anything, but when I look back at photos I’ve been blessed to do so much. I have had news from the doctors that my MRIs are looking good and that I can slowly get off prednisone. I have switched to a new medication that took time to get used to, but it is only up from here! I am very blessed but am feeling the side effects. I have been so tired but know that it will take time. It will take about a year to really feel “normal” again. That’s why pictured are so great! They remind me of all that I have been so blessed to do. Here is a photo dump of the last 6 months!! 

The end of 2023 re-chap!

2023 was probably one of the best and worse years of my life so far. The best parts were another year spent with Brad! Lots of exercise and finding out who your true friends are along with finding new friends! I got to go on a few small trips! And I got to go on some fun adventures/ eat lots of amazing food! The hardest part of 2023 was having to quit my job and complete 7 months and 7 rounds of chemo. I lost people that I loved and didn’t get enough time with, but I’m happy they are all in a better place 👼👼🕊️ we moved into a new house. I am sharing a bathroom with 2 brothers ,😳 I have had to gain a lot of confidence and being alright with this condition, and I made new great memories! I saw 3 friends get married in 2023 and I said I’ll see you again to a few others. I got to listen to and meet Victoria Arlen, and I got to go golf with my brothers, boyfriend, and dad! It was a crazy year! Even though 2023 was a huge rollercoaster of events! I wouldn’t change any of it 💗❤️🤗🫶🏻. 

          

October news!

I finished my last round of chemo in early October! 7 months 7 rounds and very happy that I do not have to go back to the infusion center for hopefully anything but blood draws. The infusions were the easy part compared to how you feel after. Getting up and starting a new immunosuppressant drug has had a lot of emotional challenges. I’m happy that it will help me get off prednisone! Oddly I can hardly remember getting the infusions of cytoxan, only the last 2 I can really remember being in the infusion center. It  has been hard to exercise and find motivation to do much of anything. But I am still doing it. I blame a lot of how I’ve been feeling as a reaction to chemo and a new immunosuppressant drug. I do get an MRI in October and am believing that it will show progress and a clear brain scan. It should be stable after all the chemo. Also looking at starting to give shirts again!