In memory of my mother Rose Hofner Katona who died of Breast cancer far too young at 32 (I was 5). And my story in the following note: No matter what you might think, YOU are NOT CURED. You are in REMISSION! 15 years ago I was diagnosed with Stage 4 Mantle Cell Lymphoma (which had probably been slowly growing in me for 4 or 5 years. I had been traveling extensively at a job I loved and was away traveling around the U.S. & Canada visiting over 500 Cities, Towns & Villages . I felt very fortunate and had a chance to live in and work in places that most people dont get to see. From Miami to Seattle, the Olympic Peninsula & Vancouver, B.C. and from Bar Harbor to San Diego and every where in between (including Port Arthur, and Waco, TX. Red Bank N.J. (birthplace of Count Basie & Sebastian Bach) and all over in every state including a February in Anchorage, AK. At some point during the 4th or 5th tour I began to have what I thought were stomach or intestinal problems and I visited Doctors & Hospitals in Providence, RI, Ft. Myers, FL, Galveston, TX, Spokane, WA, Cedar Falls, SD, Boise, ID, Reno, NV, Lincoln, Neb., Portland, OR and many other places. In all of those medical facilities, no one ever took a drop of blood. They considered me to be a kind of working gypsy or nomad and they offered diagnoses of Irritable Bowel Syndrome, Spastic Colon Syndrome, Allergies to foods or pollen blown across the Gulf (of Mexico), Food Poisoning, stomach or intestinal flu, Crohn’s disease and many other fascinating wild guesses. Meanwhile, I was losing weight and I began to have problems breathing which I first noticed while playing Yakima WA., when during a free day the drummer and I drove to Mt. Ranier for a hike. As we climbed from Paradise I began to fall behind and Steve would wait for me as I kept climbing, huffing and puffing and sweating and totally unable to catch my breath. Rather than ruin his day I told him to hike as far up as he wanted while I stayed behind on a huge flat rock and he would find me there on his way down. A marmot joined me to bask in the sun. I laid down on the rock but found I couldn’t breathe. So, I propped myself up against another rock and I could breathe again. As our tour continued, I soon discovered that I had to sleep sitting up because I couldn’t breathe while I was lying down. At some point in Knoxville or Chattanooga, TN I called Rick and told him about my problems and he very quickly said, “tell the company manager you are leaving for health reasons and alert the head carpenter to take care of the equipment. Catch the next plane back to Cincinnati and your doctor will figure this out”. That evening I was back in Cincinnati. My doctor sent me to a gastroenterologist who sent me to the hospital for a CAT Scan. The Technician Said “who is your doctor & is he treating you for your pneumonia?”. I told him “Mark Kuby & Mike Safdi and what pneumonia?”. He said “Mike is in the hospital, I’ll get him, and your lungs look full of fluid”. He returned with Mike who actually turned ash gray when he looked at my Cat Scan. He hustled me up to the Hematology/Oncology Department where a doctor informed me that I probably had Lymphoma and a bone marrow biopsy would be done. The doctor used an old fashioned hand cranked wood drill to burrow into my pelvis. I was classified as Stage 4 Mantle Cell Lymphoma. I underwent 7 rounds of brutal chemo-therapy and my weight plummeted to 95 pounds and I looked like a walking skeleton. Then, on November 23, 1999, I received my autologous bone marrow transplant (infusion of my own magically purified stem cells). I rapidly began to respond well, regaining strength and weight and within 3 months I began to look human again and started to feel good enough to work again. I was not as pleased that my hair grew back as I had grown to like the hairless look and it was definitely easy to care for (no shampoo or cream rinse). I went back out on the road for 5 ½ years until the last tour ended after which I returned home. All the while I considered that I was CURED as I was having no problems at all. Then around 2010, 2011, 2012 I noticed I was having multiple images in my left eye and I saw my Ophthalmologist annually. I thought maybe It was related to Lasik surgery I had in 2004, you know, maybe something weird with my cornea, but each time the very complete eye exam was completely normal with no corneal irregularities. In 2013 I went to my ophthalmologist and different doctors in his office 4 times in one month. On the last visit I saw David Schneider again. He said, “Jeez, Eugene, you’ve been here 4 times and seen all my doctors and I just saw you a month ago, what’s up”? I said “My left eye is driving me nuts (I’ve always been nuts) and I’m seeing Quadruple decker cars & trucks and when I stop at a light there are 4 red lights stacked one above the other, It’s just Crazy!” David then flipped my eyelids inside out and looked very closely for a while. Next he asked his nurse to get all the doctors. Within a few minutes 3 other doctors were there. David said, “Take a look & tell me what do you see”? Each Ophthalmologist said, “I see Salmon Colored Patches” (google it). I asked David, “What are you thinking?” He replied, “I’m setting up an appointment for you at the UC Med-center. This isn’t my specialty, I do general stuff like Lasik, cataracts, lens replacements etc. and I just want you to go to this appointment weve set up for you.” So, I went, and my heart sank as I saw the sign on the door. It said, “Dept. of Ocular Oncology”. Dr. James Augsburger and Dr. Zelia Correa (my gorgeous Brazilian doctor) did thorough evaluations on me after which they told me I had Lymphoma in the tissue in my eye sockets and a biopsy would need to be done ASAP (after a complete physical including several different blood panels, a CAT Scan with & without contrast, an MRI with/without contrast, a CAT Scan of the head and a PET Scan (radio-active uptake tracer). Both Dr Augsburger & Dr Correa were at the hospital for the biopsy and just before the anesthesia, Zelia leaned over and said, “I’m really going to be digging around your eyeball trying to get all the lymphoma tissue out that I can so if you ever feel anything at all signal and let me know and we’ll take you down further (more anesthesia) immediately”. All went well. Two days later I took off the face bandage and saw in the mirror a black & blue face that looked like I had gone 9 rounds with Evander Holyfield and was K.O.’d in the 9th (been beaten to a pulp). Swollen, black & blue I was unrecognizable, but, I immediately understood that the vision in my left eye was excellent, no more multiple psychedelic images. Hooray for small victories! At the Hoxworth Oncology/Hematology Center I met Dr. Stephen Medlin who explained that it was my good fortune that ½ of the staff at Jewish Hospital Kenwood when I was first diagnosed with Stage 4 Mantle Cell Lymphoma now worked at the New Hoxworth Center and they had obtained my old records including the original biopsy slides and pathology reports which had been re-examined and reclassified as Stage 4 Marginal Zone B-Cell Lymphoma (Mantle Cell is a form of B-Cell). Marginal Zone B-Cell Lymphoma has a propensity to pop up and re-occur from time to time. So I am undergoing chemotherapy (IV Retuxamab) for 2 years and Radiation treatment every day for about a month until I get a total radiation dose of 36 Gray. That should do it. Lots of artificial tears without preservatives, floppy brimmed hats for sun protection & glycerine drops for the scratchy eye sensation are helpful. So, I’ve been haunted by this dark cancer cloud for about 20 years. My advice to all is DON’T GET IT! But, if you do, try to stay positive and keep your chin up. Eugene Francis Katona and my daughter Mandy Katona
Posted on: Sat, 09 Nov 2013 13:43:01 +0000
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