Aren’t I the Popular One?

I’ve said it before and I’ll say it again, We have the best community.

I’m the Current Chamber of Commerce President in Ste Genevieve. Tonight I’m working the Summer Music Series and thought it would be fun to ask everyone to participate in our signature move “The Warrior Flex”.

They showed up! So blessed to be part of this community 🤍 Thank you for partnering with our small group of Warriors to spread the word we’re here and fighting! 💙

Ste. Genevieve Chamber of Commerce
Ste. Genevieve

Castleman Disease Collaborative Network

Update 1: I’m good! Still holding steady on all the blood work for now! My next check up isn’t until April, then I’ll have my next scans in July but until then we’re solid.

Turns out the Hormone Patches I was on were actually harmful to me. I’ve felt so much better since I’ve taken myself off the patch, as well as I confirmed with my Oncologist she thought this was a better idea and to just ramp up my Calcium and Vitamin D intake, annual bone density check ups, but for now nothing to be afraid of! So blessed.

ANDD MORE IMPORTANTLY UPDATE 2!!

Look at this load I was able to drop off at Children’s this morning!

Y’all they were SO THANKFUL. I worked with Emily, & luckily we had time to snap a quick picture so we could share with you all.

She was so lovely and kept saying these will IMMEDIATELY be used. 🤍 WAY 👏🏼 TO 👏🏼 SHOW 👏🏼 UP 👏🏼 STE. 👏🏼 GENEVIEVE. 👏🏼

Your donations for the Castleman Adults (and some stuff for kiddos) at Summit in July and this donation tChildren's Hospital St. Louis Washington Universityty really helps out.

Thank you for all your generosity and kindness. It does not go unnoticed. 🏥

The Cart was full and overflowing however I expect our hearts are even more so. 🤍🥰

Kisses and Drink Your Water!

I’m back, back again!

New Location 👀 Siteman Cancer has their own center now around the block from where I used to go. Super nice!

Talking to my local doctor about all things Castleman’s.

Hoping my blood work stays looking good. 🤞🏼

Procedure Day

🙏🏼 appreciated.

Behind by several posts but I’ll be posting about my yearly testing updates first.

I don’t remember how much detail I went into last year about going to Arkansas or maybe you’re new here 👋🏻 either way - Welcome Back!

I have Castleman Disease. A disease so rare only 3,500-5,000 patients are diagnosed each year. So if we take the high number, 5,000 out of 1 Million People only 0.005% get it (hence the name of Aren’t I Popular 🤪).

Having said that, last year I traveled to Philadelphia to meet people like me at the Summit they hold annually to learn more and to not feel alone in my journey and try to learn as much as I could.

While there I asked the Doctor leading our charge (who also happens to be a patient) about my case. He recommended I see a Castleman’s specialist. (Either Philadelphia or Little Rock Arkansas)

I went last year to get my bearings and baselines. We started a “wait and see approach” where I’m thankful to not need treatments yet (Chemo IV infusions approximately every 3-6 weeks) and come back in 9 months.

I just had my checkup. New PET scans, 2 CT Scans and blood work. Much lighter than last time I went. 😃

Why you’re likely here: The update.

The Good News:
My T cells (indicating you have an issue inside your body where your immune system is weakened) are all over the place, additional markers (I won’t get into all of them) show i definitely have Lupus and Autoimmune Diseases as if over a decade living with it didn’t tell me already 😎 My Castleman’s Disease is in my Auxilla Lymph nodes. (Under both of my armpits) My left side has stayed the same and my right has gotten bigger, but only slightly.

So all this to say: I’m still good enough to be considered “holding” for another year.

I expressed I am having an uptake in symptoms and I’m extremely tired & Fatigued this last year but since I have other things going on as well; it’s hard to pinpoint the culprit.

My specialist says no need for medical intervention for another year! 🤓

The Unknown News:
While checking my Pet scan, it was noticed that I have a polyp in my intestines. They expressed a few times that I am “too young” to have these and would like it to get checked out right away.

While a multitude of people get polyps every year and they can be routine, they could also not be.

I have been trying not to spiral until I can get checked out but I’ll be honest. I’m struggling.

I stay positive 98% of the time but it’s so exhausting having something new pop up every year or couple years.

I went as far as to ask the doctor if there was anything I was doing to keep getting new stuff. He assured me, it’s not me but it’s hard to not feel like that.

Most people in their lifetime get a handful of things. I feel I’ve reached my quota and then some for being NEWLY 35.

I will continue to do what I’ve been doing. Trusting my team (that keeps getting larger by the year 😵‍💫) that they will take care of me and just take it as it comes. But as I said above. It’s hard. I’ll be ok, I’ll get through it either way but right now I’m sad and overwhelmed and just plain tired.

An incredibly large THANK YOU to one of my best friends Rosie, whom I can’t Tag for some reason 🧐 for going with me and sitting in waiting rooms. Making drinking my iodine a “drinking game”. Giving me so many laughs when that was exactly what I needed and just being willing to sit in the hotel room and watch the Olympics, order UberEats, let me fall asleep without saying a word at 7-8pm and let me just rest my mind and body. We enjoyed talking about anything and singing way too loud to Taylor and Celine. I’m eternally grateful.

So I’ll try my best to keep this page updated along the way through my next tests and hopefully and update of “all clear” soon!

As always; Thanks for being with me along the ride.

Kisses and Drink your water friends 😘 💧

I need to do an update on all things Summit (Philadelphia) and Yearly Scan/Testing (Arkansas) but after a week out and about for me and being poked and tested Monday, I finally got home yesterday evening (which happened to be the same day the puppies both got fixed) so instead of doing anything today we’re all enjoying a “Rest and Recover Day” together.

Thank you for everyone that watched them and traveled with me to keep my household and myself sane. 🤍 love you big and updates soon.

Holy moly. I feel it tonight.

I love my people. Each and EVERY one of you.
I say this a lot but it can never be said too much- I’m so blessed.

Life has thrown a ton of things at me and sometimes I feel like it’s all a dream when I talk about it because - like who has THIS many disease/ aliments / doctor apts etc. (we all strive to be good at SOMETHING right 💅🏻)

Sometimes I forget I’ve been through things because I’m really just out here trying to live life and be “normal”.

Through a year plus of therapy I’m coming to terms with my feelings and realization I’m not “normal” but I still try every year dispite it, to embrace who I am. The things I go through are only part of me, It’s not “me”.

I am me because of all of you.

➡️Age 19 - I was diagnosed with Rhuematoid Arthritis
➡️Age 20 - Lupus & Mitral Valve Prolapse (This one runs in the family)
➡️Age 20/21 - Kidney Failure due to Lupus
➡️Insert a decade of Lupus and RA related complications
➡️Age 29 Cervical Cancer and Hysterectomy
➡️Age 33 Diagnosed with Lymphoma and Lynph Node Removal
➡️ Age 33 Correction of Lymphoma to Castleman’s Disease
➡️Age 34 O***y Removal damaged by Hysterectomy
➡️ Menopause from O***y Removal
➡️Age 35 ______ hopefully I’ll get a year off 😃

This is just a quick summary of the “big things” we don’t have enough time to cover it all 😜 and through it all, you have been here for me. 🩵

I wonder if anyone else stops to think on their birthday to be thankful to make it to another one. (Not being morbid just realistic) I feel like I’ve been given more chances than the average person, and I like to sit and reflect on it a little each birthday.

Thank you for being along this journey with me for 35 trips around the Sun and if I make it to another 35 or not, I’m happy you’re all here, supporting me. I’ll never be able to say Thank You enough.

The very minimum- Thank you for the kind words and thoughts this year and every other season in my life.

Cheers 🥂 to many more for all of us in the future. 🤍

Aren’t I the Popular One?

Thank you SO MUCH

Jena Hudkins
Alicia Vaeth
Helen Brown
And Farmington Nazarene Church!

Your donations mean a lot! Our patients will be so happy to be thought of 🩵🤍💙

If you’re thinking about donating but you don’t have any books or activities but would still like to Participate, I’ll be shipping all the books this week to arrive in time for our Summit, you could still donate to shipping costs?

Venmo is attached but I also have PayPal, Cash App or Apple Pay!

Thank you again for all your support!

https://venmo.com/u/Bethany-Chappell-2