At my most recent Mayo Clinic trip (March 11 - March 15), I had multiple test and procedures for GI along with a CT scan and follow up appointment with oncology. 

On my endoscopy and scope of my small intestine, they did find some things that needed to be removed/biopsied. However, everything came back good - nothing cancerous or pre-cancerous.

They did find that I have Autoimmune Atrophic Gastritis (AAG), which essentially means that my body is attacking my stomach cells. It was noted that my entire stomach is covered in scar tissue, likely from the AAG and medications I've been on over the years. There is nothing we can do to fix this, just something we will need to monitor since it puts me at higher risk for gastric cancer and stomach ulcers. 

I will say, for the record, that I am sick and tired of my body attacking itself and having cells mutate. From the Hodgkin's Lymphoma to the nodules in my lungs to the nodules on my liver to the rare liver disease to the tumor in my chest to this AAG... I am sick and tired of it.

The other thing they discovered is that my small intestine is inflamed, which isn't surprising considering my entire body on every test/biopsy they take seems to be chronically inflamed. 

Nothing that they found can explain the right upper abdominal pain that I have been having. They said that it could be something with the function of my GI tract, but if that is the case, there is nothing they are able to do about it anyways. They also said that there could be a small lesion somewhere that scans/scopes aren't picking up, but the only way to determine that for sure would be to do an exploratory surgery. However, this is not an option for me due to my desmoid tumor - having any form of trauma to the area would aggravate it and cause it to grow more.

They will continue to monitor me, but essentially, it's a medical mystery and chronic pain that I'll just have to live with.

For oncology, we learned that my desmoid tumor is now officially classified as a malignant primary neoplasm.

The nodules in my lungs are all stable.

Right now, my desmoid tumor is stable, therefore we do not need to do chemotherapy at this moment. However, if/when it is no longer stable, then we will need to discuss chemotherapy. In the past 12-months, the tumor has grown 194%.  I will get another scan in 3-months when I go back to Mayo Clinic.

My tumor is causing a lot of pain due to it being fused to my ribs and intercostal muscles. It is also in a high risk area due to it being in my chest wall right above my heart. 

Reminder that this is an aggressive tumor that is a lifelong diagnosis. If/when I do chemotherapy, it isn't going to "cure" my cancer. The purpose of chemotherapy would be to hopefully stop the growth or shrink the tumor to help buy some time.

I have been living my life in 3-month increments between appointments and scans ever since my Hodgkin's Lymphoma diagnosis in July of 2020. This isn't something that is a new concept to me. The difference for me between the 3-month increments when I was just a lymphoma patient is the light at the end of the tunnel. There is a cure and multiple treatment options for lymphoma. Once I hit the 5-year mark of clean scans in December of 2025, then I am considered cancer free from lymphoma. There is an ending that has a light at the end of the tunnel.

However, with this desmoid tumor, there is no cure. This is a lifelong diagnosis. I will never be able to say that I am "cancer free." There isn't a time in my life that I will ever NOT live my life in-between scans holding my breath to find out if things are getting worse faster or slower than anticipated.

With my lymphoma, I got to look forward to eventually "getting my life back." With my tumor, this IS my life now.

Plain and simple, this all sucks.

Please know that I am not saying any of this for sympathy or to be negative, I am just trying my best to be honest with where I am at and the reality of the situation. I tend to downplay the severity of things or try to live my life as "normal" as I can, but the reality is that this is all very serious and I am scared.

My 20's should be lived carefree and finding myself, not living like the grandparents in Charlie and the Chocolate Factory. I am an extrovert and love hanging out with friends and family, but the flip side of that is the next day(s) after an "outing", I can hardly get out of bed from the physical pain and exhaustion. I can't even eat dinner with my family and then play games after without needing to lay down in-between due to pain. It is a hard cycle not only physically, but mentally as well. 

Unfortunately, my body is ahead of where science is currently at when it comes to both my tumor and my right upper abdominal pain. 

I do have faith that one day the Desmoid Tumor Research Foundation will find a cure, whether that is to save my life or to save the lives of others in the future. And I do have faith that someday there will be an answer for the right upper abdominal pain that I have been having. And that faith needs to be stronger than my fear. I am afraid, but I am going to continue to move forward anyways despite the fear and because of my faith.

As I have said before, this is not how I imagined my life would be. But, I have faith that God will help find a purpose in all of this, even if I am not sure what that is right now. (Queue the song "What Was I Made For by Billie Eilish").

A good friend told me recently that although my health stuff is currently out of my control, one thing in my control is sharing my story and spreading awareness. So, that is what I am going to try to focus on in these next few months before my next scan.

Thank you to everyone who has reached out, prayed, helped with medical expenses, and offered support. And thank you for holding space for me to be vulnerable. If being vulnerable and sharing all of this helps one person, then it is worth it.

You are all LOVED more than you will ever know.