Amanda’s Story

Site created on January 23, 2024


Welcome to my Caring Bridge website! 

This site was created to serve as a single place to keep family and friends updated as I move through treatment.  Please don't feel shy to still reach out and ask questions. I'm just putting this together to help me save a little energy!

THE STORY:
Post total hysterectomy (on 11/20/23), I was diagnosed with Endometrial Cancer on 12/20/23. The specific diagnosis is Stage 2, High Grade - Endometrial Stromal Sarcoma (or HG-ESS for short).

This is a rare and more aggressive cancer and it took three labs to confirm (one of which was Mayo).
Due to the lack of cases, my doctor did not feel comfortable giving a prognosis. 

I have an excellent care team I’m working with at Froedtert Medical College of Wisconsin. Dr. Elizabeth Hopp is my primary Oncologist and I feel very lucky to have her! Even with her level of experience, she and her team only see 3 to 4 of these cancers a year. Crazy!

The current plan is to start targeted radiation therapy on Thursday, 1/25/24. I’ll be going in everyday M-F, for 25-28 sessions (about 5-6 weeks). From there I’ll be on a 3 - 6 month scan schedule for the next 5-10 years. I’ve been told it’s not uncommon for this kind of cancer to come back, so I’ll need to be vigilant. No chemo is recommended at this time.  Radiation side effects include fatigue, skin irritation, and GI upset. 

I’m very hopeful about radiation and will be doing my best to stay focused on the task at hand!! 

Along with radiation, I’ll be keeping up with regular acupuncture, yoga, gentle exercise, and maybe even a few Reiki sessions/lessons. The goal is to keep the vibes high as I move through these new challenges. So far I have found a lot of relief in my yoga practice and acupuncture. 🙏 🌀

I'll also be looking into hormone replacement therapy since the radiation will put my ovaries out of commission and me into menopause.

As you can imagine this has been a lot to take in.  Beyond taking care of myself, my goal is to help share some of the knowledge I learn along the way. One of the biggest lessons I've learned so far, is I am FAR from alone. Considering my family history, I didn't need that reminder but through this, I've met even many more people affected by cancer and my empathy for living with chronic health conditions has only grown.   

I'm sure there is something I'm leaving out, but those are all the big details I have for now! Please don't be shy to ask questions or share.  And for the love of all things good, please don’t treat me like a cancer patient - ok?  I expect to still hear about your problems and keep getting invites to events and concerts too! 

Thank you again for being here and for all of your support!! 💜

All my love,
Amanda

Newest Update

Journal entry by Amanda Rohde

As of Monday, March 4th, I am officially DONE with radiation!!

Turns out there was no official bell to ring, but I did get a certificate of completion and a photo with one of my radiologists and the radiologist therapists. Close enough! 

It's pretty wild how fast but also how slow those 6 weeks went. Another reminder that we can do anything we put our mind to it and remember that it's only temporary.  Way easier said than done, but true!

In being open with you all, this process did test my mental strength. I mean who’s wouldn’t be tested, I don’t think I’m special. It's hard to put all the emotions into words right now, so I won't, and only because I just watched the movie Dune, I have the following quote resonating in my mind: "We must not fear, fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” - Frank Herbert

I'm still mostly on the BRAT diet and taking regular doses of ibuprofen, Imodium, electrolytes ... and yes, sitz baths. While I'm done with the treatments the radiation continues to break down cells, bone marrow, and tissue for another few weeks. I'm advised to not take any extra antioxidants such as vitamin C for another 6 weeks (which seems like forever). The reason is that the added antioxidants can interfere with the treatment plan. These little fighters need to continue their work for a while, and I've been advised that it's very common to feel worse before feeling better. That said I'm considering myself to be on the other side and focusing on recovery!

Beyond the tissue breakdown and GI issues, the fatigue has been real. Like really real. Like my eyes hurt, my head feels like it's in a cloud, I can't remember what day it is, I don't have the will to make conversation, this post is taking me way too long to write ... your body forces you to shut down and recover. Not all days are like that but when it hits, it hits hard. So, I rest. 

Next is a follow-up with my oncologist at the end of the month, where I’ll hopefully get the all-clear to simply get back to life and get back in the gym! I'll continue to have scans every 3 months and in the meantime, I'm very much looking forward to planning a vacation later this year! 

I know I say this at the end of each update, but a million THANK YOUS for all of the love, support, help, texts, gift cards, dog walks, and phone calls. I feel very blessed. Thank you!

XOXO
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