Six months of Discomfort

I was just diagnosed with Lymphoma. 

There, I said it. Some of my friends and family found out when I did, in the last couple of weeks. Others will likely be shocked to learn this. I am still waiting on some final diagnostic and treatment plan details, but there is no denying that I am about to head down a long path of treatment and recovery. In an attempt to process all of the information, logistics, and emotions that are about to come my way, I decided to document my journey through this blog. Feel free to subscribe and come along for the ride, or bookmark this page to check back intermittently to see how I'm doing. Of course, you can still reach out to me directly — and I hope that you do — but capturing the details of my disease, treatment, and support needs in this format will alleviate the need for me to repeat myself and help me stay on top of follow-ups with people. 

So, how did we get here? 

In early October 2025, I was at Folly Beach with some friends when I caught a chill I just couldn't shake. I didn't have a fever and hadn't been sick, but I was chilled to the bone. I buried myself under piles of blankets for about an hour until it passed, then rejoined the group and carried on with my day. That was the first of what would become a growing list of vague, nondescript symptoms that accumulated one by one over the next six months, ultimately leading to my recent Lymphoma diagnosis. These included: 

• Indigestion and acid reflux that didn't respond to several rounds of over-the-counter medication
• Bloating and belching after almost every meal
• Nausea and vomiting that appeared for no apparent reason, then dissipated without intervention
• Increased thirst and frequent urination
• Chills and drenching night sweats
• Muscle weakness and fatigue
• A sudden reversal from being an insomniac to oversleeping
• Strange late-night hunger spells and unintended weight loss
• Dull abdominal pain that became more consistent and severe over time 

None of these symptoms was extreme, nor would any of them have warranted attention on its own, but as the list grew, I became increasingly worried that something was not right. My mother died of pancreatic cancer four years ago, just three weeks after her initial diagnosis, so I had reason to be alarmed. 

I went on a trip to Mexico with my friend Bonnie and a small group of women in late January and early February, and although these symptoms continued, we stayed busy, were having fun, and I just powered through each day — attributing my evening exhaustion to our packed schedule. During the first week of the trip, I had what I thought was a bout of Montezuma's Revenge, but now I wonder if it was my body trying to alert me that something was wrong. 

At the end of February, shortly after returning home, I had an annual wellness visit scheduled, so I sent a list of my symptoms to my primary care provider in advance and told her that I hadn't been feeling like myself. She examined me, ordered blood and stool tests, put in a referral to a high-risk pancreatic cancer screening clinic, and ordered a CT scan of my abdomen. She then mentioned that she would be on vacation for the next two weeks and would be retiring at the end of April. Not going to lie — I felt a little abandoned. My lab results came back a few days later with some minor abnormalities, but I was still waiting for my CT scan to be scheduled. I followed up with both the radiology department and my insurance company numerous times trying to understand the delay, and was told repeatedly that prior approval was required for the CT order and that a third party was reviewing it. Two weeks later, just before my doctor returned from vacation, I was so desperate for answers that I agreed to pay out of pocket for the scan, and an appointment was scheduled for the next day. I had the scan done that morning and received the results before I even got home. It showed that I have five large masses in my abdomen — two on my small bowel, one on each adrenal gland, and one on my liver. The doctor covering for my primary care provider called me, acknowledged the "unfortunate scan results," and referred me to an oncologist. A few days later, I received a letter in the mail stating that the third-party reviewer had denied prior approval for the CT scan as they had deemed it "medically unnecessary." I wanted to scream — which I did — and then promptly called my doctor's office to request an appeal. A week later, they approved it and my insurance company agreed to cover it. 

Once I had a referral to the UVA Cancer Center, I reached out to my friend Kathleen who works there, and she quickly took me under her wing, helping me navigate the diagnostic process by sharing my scans with radiologists and oncologists and expediting the next set of orders. She also checked in on my daily just to see how I was doing. I am so grateful to have had her as an advocate by my side. 

Over the next several weeks, I underwent additional lab tests to rule out various conditions, had biopsies taken from my right adrenal gland, took calls with nurse navigators, and had an echocardiogram to make sure my heart is healthy enough for some of the harsh drugs that are likely coming my way. My friend Sally, a retired physician, has been accompanying me to appointments and has been a great support and a sounding board for my questions and concerns. 

On Monday, April 6th, I finally met with an oncologist who laid things out quite clearly. He told me that I most likely have an advanced, aggressive form of Non-Hodgkin's Lymphoma called Diffuse Large B-Cell Lymphoma. He said "most likely" because we are still awaiting results from a final cytology report that will reveal whether several specific lymphoma-related genes are behaving abnormally. If any of them are, it could alter my diagnosis slightly and change the treatment plan significantly. I have a PET scan scheduled for Friday, April 10th, which will determine the staging and how widely the disease has spread, and an MRI of my brain scheduled for April 20th to assess whether the lymphoma has crossed into my central nervous system and caused tumors in the brain. That would change things considerably, as the drugs used in the standard treatment protocol cannot cross the blood-brain barrier — meaning an additional intrathecal treatment administered directly into the cerebrospinal fluid via lumbar puncture would be required. That is something I sincerely hope we don't have to do. 

Where do we go from here? 

I left the appointment with an action plan that is highly dependent on a test results-based decision tree: 

• If my final cytology report reveals genetic abnormalities, my diagnosis and treatment plan could change:
• If my MYC gene has translocated (mutated) → diagnosis changes to Burkitt Lymphoma
• Treatment: R-CODOX-M/R-IVAC + EPOCH-R (a chemotherapy/steroid regimen—each of those letters, above and below, stands for a specific drug)
• If my MYC gene has translocated along with my BCL2 and/or BCL6 gene → diagnosis changes to Double/Triple-Hit Lymphoma
• Treatment: EPOCH-R (a chemotherapy/steroid regimen)
• If my final cytology report reveals no genetic abnormalities, the current assumed diagnosis stands:
• Diffuse Large B-Cell Lymphoma (DLBCL)
• Treatment would depend on whether I decide to enter a clinical trial or not:
• Option 1: Standard treatment: R-CHOP
• Option 2: Investigational treatment: R-CHP plus an investigational drug that takes the place of the “O” drug in the standard treatment.
• If my MRI reveals a brain tumor, then, to quote my oncologist, "Everything changes."
• One option would be to add intrathecal methotrexate (a chemotherapy drug), which would deliver chemotherapy directly to the brain.
• Another option may be to reconsider treatment altogether if the disease is too far advanced. I'll cross that bridge if and when we come to it. 

One thing I’ll note, is that all of these treatment plans have a curative goal. That’s the good news and is what will help get me through these treatments. 

When will treatment start? 

Because of the aggressive nature of this cancer and the urgent need to treat me sooner than later, my oncologist has scheduled my treatment to start on Thursday, April 16th (yes, that’s next week). By then, we’ll know if any of those genes mentioned above have mutated and I’ll have made a decision about enrolling in the clinical trial or not. If they can get my MRI moved up, then we’ll also know about any CNS/brain involvement. If not, then we’ll know soon after my first treatment and the additional chemotherapy can be added then. 

Regardless of the treatment chosen, I’m looking at 4-6 months of some pretty harsh drugs. My hair will definitely fall out, my immune system will weaken, and I’ll have days in between treatment cycles of extreme fatigue. 

How can you help support me? 

At this point, I don’t even know and probably won't until I understand the cadence of my treatment and its effects. Certainly, staying informed through this blog and checking in on me periodically will be helpful. For my local friends, I may need rides to/from appointments or company while being infused. I’m hoping that my abdominal pain will subside soon after treatments begin, so eating will be more palatable, but since I live alone, offers of large quantities of food may not be helpful. Maybe if you’ve made something delicious for dinner and have leftovers, you could drop off a single portion for me the next day. I’ll probably also appreciate offer to go on walks with me or to come over to watch a movie or play a game, but none of that is different than life pre-cancer. I’ll just have to see what needs arise as we get into the thick of things. I appreciate everyone’s desire to help out.

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Much more to come....