A couple of days ago I read a story about a young sportscaster who passed away, shockingly. He was admitted to the hospital for what they thought was pneumonia and he passed away a few days later. When they did the autopsy they found that he had a type of stage 4 Non-Hodgkin Lymphoma, which triggered his pneumonia and other lung complications. He was only 34. He may have had symptoms that he didn’t connect to anything such as night sweats, fatigue and weight loss, possibly for years. And being only 34, he may not have gone for a physical recently. His name was Edward Aschoff.
Apparently I was walking around with my lymphoma for at least 15 years, looking back on it. That meant I was around 37 years old when I could have been diagnosed. Back in late 2000 was when I had the first sign that something strange was going on in my body. I would break out into a red, burning rash after my skin would be exposed to cold temperatures and then warm up. It was worse when it was damp. The warm weather didn’t help me as you would go from the heat outside into air conditioning and vice versa. This phenomenon has a name – cold urticaria. In my case it was called “idiopathic” because they couldn’t figure out why it was happening, even though I went to various doctors to try to figure it out. Clearly my immune system was “freaking out” and reacting to something harmless that it thought was an “invader”. I had to adjust my life accordingly and carry an Epi-pen just in case things got really severe and it caused me to go into anaphylaxis. Imagine trying to explain why you can’t go swimming, be outside in certain weather conditions, and why you are breaking out into a rash over “nothing”. It was embarrassing but little did I know it was much worse than that.
My immune system was “freaking out” because certain types of white blood cells were becoming damaged and so they weren’t performing their jobs correctly. They were misfiring and causing histamine to be released.
The next sign was around 2004 when I started to become anemic. As my red blood cell counts became lower, they were poor in size and quality, and my hemoglobin went below normal, my white blood cell count started to climb above the normal range. The doctor asked me if I was sick lately and also prescribed iron.
Each year or so that I went for my physical things got progressively worse and the direction was the same – take iron. Had they done a bone marrow biopsy on me at any point over these years they would have had the answer.
Fast forward to March of 2015 when my white blood count was 240,000 (normal is 4,000-11,000) and the rest of my CBC was incompatible with life. March 14th, 2015 is when I began my treatment for what was then diagnosed as Mantle Cell Lymphoma.
There are more than 60 types of lymphomas. Some are more common and easier to deal with than others. And anything is easier to deal with when it is in its earlier rather than later stages. My disease was so late stage that I should have been dead. And yet in the days leading up to when I was diagnosed I was exercising and working, although I felt really weak and “sickly”.
Mantle Cell Lymphoma. Its name comes from where the dysfunctional cancer cells originated – in the mantle zone of the lymph node. For some reason – these immune system cells being created in my lymph nodes had their DNA damaged and their p53 gene that is supposed to keep a check on cancer cell proliferation, didn’t work. These cells were allowed to live, multiply and proliferate unchecked. They should’ve been recognized and destroyed by the p53 gene. What caused this damage? I don’t know but I have my suspicions. My doctors won’t commit to a specific cause. Whatever it was it happened earlier during my lifetime at some point and was not inherited through defective genes.
Mantle Cell Lymphoma is not one of the easier lymphomas to deal with. Apparently it is never “cured” the way other lymphomas can. The mean time of survival from diagnosis to death is 58 months. Today it is 58 months and 8 days since I was diagnosed…..
The Lymphoma and Leukemia Society specifies these symptoms that could lead to a diagnosis of Non-Hodgkin Lymphoma:
• Painless swelling in one or more lymph node(s)
• Unexplained fever
• Drenching night sweats
• Persistent fatigue
• Loss of appetite
• Unexplained weight loss
• Cough or chest pain
• Abdominal pain
• Sensation of bloating or fullness (due to an enlarged spleen)
• Itchy skin
• Enlargement of the spleen or liver
• Rashes or skin lumps.
If you have any of these symptoms see your doctor. It’s also good to get regular physicals because lymphoma, among many other diseases, sometimes doesn’t show symptoms, especially in the earlier stages.
My disease wasn’t caught until it’s latest of stages and for that I had to pay with stronger treatment and a poorer outcome.
The irony is that literally almost every day over the last month someone comments on how healthy and good I look. My recent bloodwork seems to back up my outside appearance. It is miraculous that I am even here. I am hoping to be that “cure” that has so far evaded my disease. I’m still working on it, through my intensely healthy lifestyle, 58 months later.