How I Found Out: My Journey to Diagnosis
I haven't been feeling well for quite some time, and I wanted to share my journey to help you understand what's been happening and what lies ahead. Today, March 11th, I received confirmation that I have Stage 4 Hodgkin lymphoma, and I want to share how I got here.
The First Signs
The earliest signs were subtle. Back in September 2023, I experienced unusual lip swelling after our trip to Mackinac Island. At the time, it seemed like a strange isolated incident. These episodes happened a few more times over the following months, but despite seeing allergists and other specialists, we couldn't find a clear cause.
Summer Changes
By summer 2024, new symptoms began to emerge. I noticed a swollen lymph node in my neck that didn't go away. Unlike typical swollen nodes that appear when you're fighting a cold, this one persisted without any illness. Over time, more lymph nodes became noticeable - first in my neck, then near my collarbones, and eventually in other areas.
Mounting Concerns
The fall brought more changes. I began experiencing profound fatigue - the kind that sleep couldn't cure. I would get 10-12 hours of sleep and still feel exhausted by mid-morning. Then came the night sweats in December, so severe I would need to change clothes and sheets. Without changing my diet or activity, I began losing weight rapidly - more than 20 pounds since November.
The Search for Answers
Throughout this time, I visited multiple doctors and emergency rooms. Blood tests came back largely normal, which we now know is common in Hodgkin lymphoma. CT scans showed “prominent” lymph nodes, but they were initially considered too small for biopsy. We ruled out numerous conditions - autoimmune diseases, infections, and other potential causes.
A Turning Point
The turning point came when I discovered a mass in my abdomen, about 2-3 inches long. This discovery led me to my first meeting with Dr. Chaudhry, an oncologist at Gibson Area Hospital, on February 18th. He quickly recognized the pattern of symptoms and rush-ordered a bone marrow biopsy, which I underwent on February 20th. We weren't able to schedule the PET scan until February 28th to complete the diagnostic process.
The Diagnosis: Stage 4 Hodgkin Lymphoma
Today, March 11th, I met with Dr. Chaudhry again to review all the test results. He confirmed what we had suspected: I have Stage 4 Hodgkin lymphoma. What I've learned is that Hodgkin lymphoma often presents exactly this way - with symptoms that individually might not raise immediate alarm, but together tell a clear story. The persistent lymph nodes, drenching night sweats, unexplained weight loss, severe fatigue, and that peculiar itching sensation I developed in my legs and arms - these are all classic signs.
I want you to know that while this news is serious, Hodgkin lymphoma is generally very treatable, with excellent success rates even at Stage 4. I'm feeling strong, and I'm facing this with faith, surrounded by an incredible support system - including all of you.
Looking Forward
Now that we have a clear diagnosis, we can begin to plan the treatment journey ahead. What I do know is that I'm blessed to have such caring friends and family. Your support means everything to me, and I'll keep you updated as we move forward with treatment.
A Message of Gratitude
I want to thank everyone who has been there for me during these uncertain months, helping me piece together this puzzle and supporting me as I searched for answers. Your prayers and positive thoughts have carried me through this diagnostic journey, and I know they will continue to be a source of strength in the days ahead.
I'm ready to face whatever comes next, and I'm grateful to have you all by my side.
— Emily