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Thomas is
Blood Cancer United

Thomas ringing the bell, HL survivor

I had bariatric surgery on May 11, 2022. At the time, I weighed just under 600 pounds, and I understood that there was a higher possibility for complications. My three-hour procedure turned into a six-hour procedure, and my overnight stay in the hospital turned into a week. During surgery, they discovered my spleen was significantly larger than normal, and in the days following my surgery, I kept losing blood. After two exploratory surgeries, four units of blood, and a trip to the ICU later, I was finally released from the hospital with no confirmed cause of bleeding.

I was anemic due to blood loss, so my hemoglobin was closely monitored over the summer. I was healing, and losing weight, and my hemoglobin was going up. I thought the issue was over. In August, my hemoglobin went down a little, but it was dismissed as a margin of error.

In late September, I went apple picking with my wife. I didn’t feel well; I was very lightheaded and weak. I passed out a couple of times when bending over. At one point, I attempted to walk up a small hill to my wife and physically collapsed. I was concerned that maybe my blood pressure meds needed to be adjusted and scheduled an appointment with my primary care physician.

My PCP was very concerned when he saw me. I was very pale and dizzy. He was concerned about my heart and offered to arrange transport to the local hospital. I went home and had my wife bring me to the ER.

The ER did a variety of routine cardiac tests and determined that my heart was healthy. A routine blood test revealed that my hemoglobin was in the low sixes. The doctors were concerned I was bleeding out again. I was admitted to the hospital, and over the course of the next week, I received several blood transfusions and a variety of tests that determined I was not bleeding internally. It was also determined that the reason my hemoglobin was so low was because I was not making red blood cells. Hematology was brought onto the case, and after a CT scan, they found enlarged lymph nodes in my pectoral muscle and armpit. I was released from the hospital, and a lymph node biopsy was scheduled along with an appointment with a hematologist/oncologist.

I had my biopsy, and the report was uploaded to my online patient portal several days before my hematology/oncology appointment. We were lying in bed and decided to look at the file. For anyone in a similar situation, never do this--wait to talk to a medical professional. My wife read the report and instantly started crying, turned to me, and said “You have cancer. Hodgkin lymphoma (HL).” Neither of us knew anything about HL. We feared the worst and trudged through the days to our oncology appointment.

On Friday, October 28, 2022, we met with Dr. Flanagan at the University of Kansas Cancer Center. Dr. Flanagan told us about treatment options, but more importantly, that HL is curable. His optimism brought my wife and me out of our funk, and we were ready to fight this head-on.

Over the next couple of weeks, I had a port put in and a PET scan for staging. I was diagnosed as stage 4, with HL in my spleen, bone marrow, and throughout my lymph nodes. This explained the bleeding after my surgery, as well as my anemia. Several blood transfusions later, I started ABVD chemotherapy on November 16 and would receive therapy every other Wednesday.

I actually started feeling better after I started chemotherapy. My hemoglobin started going up right before Christmas. I had my second PET scan in early January which revealed a significant reduction in disease. Dr. Flanagan ordered an additional four months of chemotherapy. I rang the bell on April 16, had my post-treatment PET scan on May 1, and on May 3, I was told I am cancer-free. I have also lost over 300 pounds, and I am so ready for everything in life I have ahead of me.

The Leukemia & Lymphoma Society (LLS) was supportive of my wife and me throughout my diagnosis and treatment. My wife called the hotline several times just to talk. They provided us with a caregiver notebook as well as a ton of information about treatment, nutrition, medications, and survivorship. Our questions were answered, and we felt supported. We are forever grateful to LLS as a resource and for the lifesaving research you help fund.

Thomas

Hodgkin lymphoma (HL)

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