I remember having stomach issues and going to G.I doctors in the hope of finding out why. One day I had a routine follow-up appointment with the rheumatologist. She asked me how I feel. I went through a series of biologic medications to treat my chronic arthritis. I remember saying to her ” I’m going to die, no specialist is finding out what’s wrong with me!” She said no, I’m going to refer you to another G.I doctor. She gave me the referral. A week later I had a video visit with him. This was May of 2020/ the start of covid. A week later I had a colonoscopy and endoscopy. 10 days after that I was diagnosed with t cell lymphoma duodenum meitl. A rare and aggressive form of non-Hodgkin’s lymphoma. So rare and aggressive no specialist really knows how to treat it! It is treated as any other form of lymphoma. I remember my hematologist-oncologist saying your case is so rare we had a conference about you. I asked him what that was. He said that doctors gather from all around the world to discuss rare and aggressive cancers and how it should be treated. He told me you will have to have the Whipple surgery to remove the cancer. I asked what exactly does that mean. He told me. I said wait a minute. Lymphoma doesn’t know that I am rare and aggressive too! That’s when I had not just a second but third opinion from world-renowned doctors, who still had no real idea how to treat the form I had. However, they gave me more understanding of what I should do. Long story short, I never had the surgery and there’s no trace of the lymphoma now. However, there are times when I go for surveillance and the techs and specialists think the lymphoma has returned.
I learned through this experience that self-advocacy and not jumping into treatments without seeking other opinions is key. Keeping a clear and calm head during the storm is extremely hard but necessary and having a great network of loved ones is key!!
Just know you’re important, loved and valued! Never be so scared you don’t do your homework! I shouldn’t be here right now according to the specialist, but, I am!!
Today I celebrated my 3 years after the diagnosis!
I’m a proud lymphoma warrior! Know your body and listen to your body signals. Don’t let doctors tell you that nothing is wrong when deep inside you know there is! If I had listened to the specialist who didn’t find my lymphoma it would have rapidly progressed. I listened to me and made sure they knew I wasn’t giving up on finding someone who listened to me and helped! Grateful that I did! I urge you to as well. From one warrior to another keep up the good fight, be your own warrior, self advocate and keep going strong! Your family loves you, love yourself and know God loves you!