March 28th. Neck biopsy negative. My systemic autonomic symptoms are improving greatly. I removed cymbalta from my body on Feb 5th, and it nearly killed me. It was ruining my body as I was taking it. My body started rejecting my medications last year, and I slowly weaned off most of them. This whole process has been wild, and I have made a mess. I am grateful the pain and mental anguish has subsided and I am beginning to feel more clear minded, and more convinced that I do not have stage 4 follicular lymphoma, that I do have stage 1e primary site duodenal FL. Which is in its own class, and behaves differently than non duodenal lymphoma. It is extremely rare. I am still getting my intestines worked up for more evidence of disease as my stool still is not right, I have no appetite, a lot of abdominal discomfort. I'm doing things that bring me joy, I'm able to show up to life in a manner that is conducive to a healthy life. Thank you for your continued support. 

March 1st. 2024. Getting closer to answers. Plan: neck biopsy, tilt table study, autonomic dysfunction clinic, Rheumatology, and GI for stool studies. Still hanging in there.

Feb 25, 2024 update. I will likely be diagnosed with stage 4 Follicular Lymphoma. There is suspected involvement in my neck lymph nodes, lungs, and uptake in my bones. The cancer has been confirmed in my duodenum, grade 2. It is hard to see on scans, the cells are not very large (you cannot even see the confirmed cancer site on a PET scan or CT scan with contrast). On scans, I'm not presenting the way one might with this diagnosis, so it's been hard to nail down. I was diagnosed with stage 1E primary site duodenal follicular lymphoma, and in my heart and spirit I know thats incorrect. I have all the symptoms of someone with Stage 4. 

I have not gotten treatment yet. I am still seeking a definitive diagnosis. This is a rare cancer, and rare for someone my age to get it. There is no cure, and remission is the goal. It is very hard on me right now. The cancer eating at me, and what it's doing to my spirit. I have an oncology appointment tomorrow for my actual diagnosis, and plans. This is my second opinion. The first opinion wanted to treat my confirmed cancer site with targated radiation, and not consider the rest. That's not enough for me. 

I have been violated with and without my permission in this life, all the way through. Before accepting chemo or radiation, I have to be certain that the treatment offered will lend itself to my betterment. I have been through enough, and these choices are not easy. I was always someone who said I would never get chemo or radiation if I got cancer. I'd said that I wouldn't want the end of my days to be filled with sickness and inability to function. I didn't want a poor quality of life. Well, right now I can't  function, Im in pain, and have a very low quality of life. Treatment is my only option if I want to get well, and accomplish some of the things I wanted to do here, before it comes back again. I don't want to keep treating this cancer. I struggle to even see the reason to treat it now. Why not just let it take me and donate my body to a lymphoma research center? Would they even care?  

But, I'm still here, and still seeking answers for us. For me, for you, for the future people that will get this. 

Thank you all so much. Hug the ones you love, be nice to others. I struggle with being nice right now, I'm sorry. 

Background: Realizing now its been years of steady decline of my health. And in May 2023 I was feeling an array of physical symptoms that I could not remedy on my own. Dizzy, light headed, heart palpitations, nausea, no appetite, stool changes, fatigue, drenching sweat chills at work and at night, lost 25 lbs. I had heart burn, and got full soon after eating, often times feeling ill. I started seeking the doctor in september. I was worked up with a brain MRI, echocardiogram, labs, chest XR. I saw a cardiologist, neurologist, gastroenterology, and my primary care 5 times before being diagnosed. I was about to give up, I was starting to think I was crazy, and the doctors did too. I kept pushing. I almost canceled my upper-endoscopy. At this time I was feeling okay. I took myself off all of my medications because my body could no longer handle it. This was in December. 2 weeks later I was diagnosed. 

Original post: Hello friends. Life hit me hard hard in 2023 with the deliverance of the news that I have lymphoma. After months of tests, sickness, and stress, the diagnosis actually brought some relief and validation. 

In 2022 I finished my nursing degree and I started heading toward my goal of becoming a hospice nurse. After 18 months working on a med-surge floor, I found my perfect career opportunity! I even signed a contract to start work for a hospice agency right before I got sick. It is a dream of mine to help families walk through this part of life with all the love and support they deserve. How ironic that I get to see first hand what patients might go through before reaching me, professionally. Fitting. 

On the journey to uncover my current health state, I spent many weeks off work unpaid.. make sure you elect disability insurance if offered at your job. Luckily, I have it for the new year. I am also so grateful for my employer who has been 1000% supportive of me. 

I am asking for some support to help cover cost of debt that has been accrued so far. I have applied for grants to help cover some medical expenses moving forward. No cent will go wasted. I'm determined to get better so I can keep being of service, and keep seeking and spreading light in this, sometimes dark, beautiful world. 

Thank you for reading, thank you for help, thank you for caring.