re: ESPN undiagnosed non-Hodgkins Lymphoma (More personal story p.3)

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My friend’s dad developed a cough over the course of just a week, but felt fine otherwise, since the cough did not seem to be going away, he went to his doc the following week, and after numerous test was diagnosed with lung cancer that had metastasized to his brain and other organs, he died about two weeks later. Sometimes the body’s immune system does a good job of keeping disease in check right up to the point it can’t, and then it’s too late to treat it.

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I had Stage 4 Diffuse Large B Cell Lymphoma. My first symptom was a small knot under my jaw. I thought it was just a swollen node from a molar cap that had come off the week before. Never felt poorly anywhere else. After the ENT excised it and did a biopsy and determined that it was non Hodgkins Lymphoma, I was at the oncologist within 2 days.

He asked if I wanted to take part in a clinical trial with a 3rd phase of testing rituxin as part of the CHOP/R chemo treatment. I agreed and that set the start of treatment back a month as I had to undergo a series of tests and measurements to establish a baseline for the study. In that one month period, the cancer spread like crazy to all over my cervical area, my thoracic area, my pulmonary region, 6 lesions on one kidney, 4 on the other, and on the end of my pancreas. In one freaking month. The newest generation rituxin worked with the CHOP treatment to make it all reduce drastically after only 3 treatments. By the end of the 8th and last chemo cycle, it wasn’t showing up anywhere.

A relapse occurred 8 months later though. Instead of being all around my body, it strangely massed into a 20oz water bottle sized tumor around my lower spine. That tumor grew quickly and aggressively. Emory Winship gave me a 35% survival prognosis. The treatment for this relapse was super aggressive and they said they had to throw the kitchen sink at me. They put me on a Hyper CVAD chemo plan with localized radiation to the tumor on my spine and radiation on the brain. Even though there was no indication of cancer on the brain, they were concerned that small cells might have traveled up my spine and were just undetectable at the time. I had a central port in my chest for the chemo to my body and a port attached to my skull for chemo to the brain. The treatment was to finish with a stem cell transplant.( luckily, I was only 41 at the time and was able to auto donate and did t have to be to concerned with my body rejecting another donors cells) Prior to the transplant, they gave me TBI (total body irradiation) to kill every living cell of bone marrow in my body before re-introducing healthy cells. That sucked. I laid on a table for 30 minutes on one side of my body while this machine just blasted my whole body and then flipped over for another 30 minutes. I did that 2 days in a row. Sick as a dog.

In all, I was inpatient off and on for 82 days at Emory. Then lived 3 weeks at the American Cancer Society Hope Lodge about 2 miles from Emory as they monitored me. (That was free and any time you donate to them know that not only does money go to research but also to the off site support facilities like Hope Lodge)But here I am 9 years later with a gimped up right leg( the tumor had destroyed all of the nerve endings to my right upper leg) and a port on my skull hidden under the hair that fought its way back. Thinner but still full coverage, LOL. And if I ever have to run from a dog, I am toast. My top end speed is now a joggers gait.

Lymphoma has many symptoms that may manifest prior to detection such as night sweats, tiredness, etc. but I didnt have any of those. I felt good and was in a good place both mentally and physically. I went I I went in to get the knot checked out after it didn’t go away after a couple of weeks and next thing I know, my whole life was changed. And worse, I had 4 children ages 13 to 2. Learned a lot from it though and it made me reprioritize my whole life after the sun came back up on my life.

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Yeah dummy lymphoma isn't lung cancer.

What really sucks though is how many people he slept with who had no idea. They're probably all going to have to get tested.

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Lymphoma has many symptoms that may manifest prior to detection such as night sweats, tiredness, etc. but I didnt have any of those. I felt good and was in a good place both mentally and physically. I went I I went in to get the knot checked out after it didn’t go away after a couple of weeks and next thing I know, my whole life was changed. And worse, I had 4 children ages 13 to 2. Learned a lot from it though and it made me reprioritize my whole life after the sun came back up on my life.

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