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!

September Update!

In September I mostly regrouped! I started September with my 25th birthday and celebrated the day with Bradley! We went all over the Ventura Harbor and had a day of food and fun! My two favorite things to do! I was showered with so many birthday wishes and gifts. A few days after I had to go and get a Chemo infusion but it was my second to last. I saw my doctor at children’s and he put a plan together to finish chemo, start a new med while I slowly am taken off prednisone! Prayers needed there 💗 I haven’t been prednisone free in so many years. But after all of that I got to see one of my best friends and catch up with others 🤗. There have been a few extra shots/ IVs that I have been doing to help my body as I transition to no more medication. This is going to be a long slow process but I have very high hopes!! I ended out September seeing an awesome motivational speaker! Victoria Arlen was speaking in Santa Barbara and last minute after hearing her story on the news my dad and I got tickets to see her. It was encouraging to hear a story so similar to mine and to see what she has made of herself despite her pass and some disability she still has to over come. It was a story of healing through gratitude! I start October with my final chemo treatment and the transition will begin 🙏🏻

Chemo infusion Day

On the days that I go get chemo are the days that require some extra prep and post work. The day before I try to drink a lot of water so that my body is hydrated and prepping my veins. I’ll take it easy that day and pack up a bag of what I want to bring. I set out my clothes, take off my jewelry and bring chargers or any snacks I know I’ll want. We usually get up around 4am, leave the house by 6am, and chemo starts at 8am. We get to Children’s, maybe grab a coffee and go to the 3rd floor to wait more. Once they find a room to put me in, I get my nurse and they will find a vein for the infusion. I start my premeds with a bag of fluids for the first 2ish hours. Then they give me oral Benadryl and a drug that helps with 🤢 nausea. Some liquid drug is infused and some more IV You flush stuff. The chemo finally starts and runs for an hour. The process is long and boring. There is rushing around outside the door and always noise. There is a nurse that comes by every hour to check your vital signs and you track your in take and output of liquids. After that you get another bag of fluids for 2+ hours before you can leave.

Finally the day is over! We get to go home! 

August So Far!

August has been a lot of infusions and days of feeling really tired and soar. I have been so thankful to be able to do a lot of swimming, which feels really good for my legs. It’s exercise that doesn’t hurt as bad as it does on land. I have been able to do some fun activities with my younger brother, friends that I don’t see often, and family! I did get an early birthday gift, which is a leg compressor that has helped my spastic/ very tight muscles (the worst in my legs) feel so much better. August so far has been a month to reset before summer is over and appointments and MRIs become more frequent. Hopefully August will end  and September will start with good news and show some physical progress is being made. I’ll get IVIG, Cytoxan, and see my neurologist all in early September before an MRI in October. 

More July Fun!

 I did it I made it so that you now can purchase a Persistent and Patient shirt (link is at the bottom). Growing up in Moorpark we always started July with the 3rd of July. That day I had my usual IVIG treatment, but also went with my dad to his friends very nice house for a BBQ and can see the fireworks from their backyard. Started this month with the typical 4th celebration, it was great at my Aunt Jackie’s house! Went over later in the day and got to see her granddaughters who live in Minnesota. We spent the day playing right, left, center. It was a lot of fun, but we didn’t use any money. You can see the fireworks kind of from their backyard. Set off sparklers and other fun things. But the month was great with chemo on the 10th and kick off to selling my T- shirt! Thank you to everyone that supported me and bought a shirt! Chemo has been difficult but I have an amazing support system. I was retaken to the infusion center and had to switch rooms 3 times, until they found one for me with a working bathroom 🙏🏻 a necessity! The day is long, with a 2 hour bag of fluids and meds, then a few other things they mix in, then the hour Cytoxan, more meds, and finishing with a 3 to 4 hour bag of other fluids. The day is long but I continue to work out and I swim as much as I can. Later on that month I was able to see my dads side of the family and hangout with my cousin, aunts, and brothers. 💗

https://www.bonfire.com/persistent-and-patient-1/