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/

Made a shirt!

June has been a crazy month, but so many great things have happened! Started off the month with lots of ideas! The month of June we got to celebrate Brad for his 25th birthday! We went to a great lunch at Islands, played a round of bowling and a trip to the Moorpark College teaching zoo. The month was full of cake, swimming, and adventures! I did have to get a few IV treatments, but still had one of the best and most fun months! I'm still figuring out how many more chemo treatments I’ll need to have, but everything is moving in the right direction! The most exciting news is by the end of June I came up with a design for a shirt, that hopefully I will be able to figure out how to get a link for it, so that anyone who would be interested in purchasing one can. It is just a reminder for anyone (including myself)  that they can do whatever they set their minds to if they don’t give up. More on the shirt by the end of July!

May update!

My best furry friend got recertified in May! I spent the end of May working with him a little more and getting Lincoln ready for the recertification test. He had to take off a few pounds, but he did it! We had to get recertified with a new lady I have never met, and it was showing that he does his commands over FaceTime. Luckily, Lincoln pulled it together and now we can go another 3 years being a team! He did get a lot of love and treats after. May also involved, a trip with my boyfriend to Los Gatos, seeing one of my best friends since elementary school get married, and more IVIG and chemo IV infusion, and a few birthdays in between. 3 chemo infusions done and another one in a few weeks. I’ll be having a MRI at the start of July and am believing and praying that the chemo treatments are working!

Rowing

A little over a year ago I had the opportunity to try rowing! I wish I would have kept it up, but it is an expensive sport. I randomly had gotten in touch with an old friends mom and she offered to let me try rowing. Since it is mostly an arm exercise, I was happy it would be something I could do. I’ve done a lot of rowing on a machine but this experience was way more complicated. You are rowing backwards and have to learn all the terms and how to get back in the shell (name of the boat) if it flips over. There is the stern (back) of the shell and the bow (front). You are rowing backwards and have to row at the same time and be super in sync with the team. The man that was teaching me was very helpful and a great teacher. Luckily he took charge and would yell, sweep and catch so that we would take a stroke at the same time. You also have to feather your oars on top of the water so that after a stroke you aren’t slowing down your team. The starboard (right) and the port (left) of the shell do everything at the same moment. There is so much more to learn than what I did in a hour and a half lesson. I wish I would have continued to row, but it is an exhausting sport and takes a lot of strength,patience, and memorization. I would go again for fun but wouldn’t want to join a team. 

Short Catch Up

I haven’t posted anything in a long time! What happened in the past two (or more) years! Way to much to write in a post. 

1. I have done a lot of IV treatments and seen many different doctors.
2. I did an oral chemotherapy treatment, that was a 2 year process, but sadly after getting an MRI I was told that it really didn’t do what we were hoping it would. 
3. Found the best boyfriend in the world!
4. Have taken some trips.
5. Love my service dog, Lincoln.
6. Continue to workout the best I can.
7. I’m about to start a new IV chemotherapy treatment.
8. Had to go to a fertility doctor to help me decide what to do for a possibility that I may want in the future. 
9. Cried a lot, laughed a lot, and have found a new me. 
10. I’m also still undiagnosed but use the name Atypical MS as a diagnosis. 
11. Have had a lot of fun!

I hope that I’ll start talking about my story again more, and life in general even if it isn’t on this platform.