Last updated: 7/5/2011
Ted's Story
I was diagnosed with a thumbnail sized brain tumor in August of 1988 after my first focal seizure episode on Jan. 10, 1988 while driving a stick shift pick-up truck with my wife Debbie as passenger. My left foot felt numb and I felt my left arm and hand had a giant sponge wrapped around it. Needless to say pressing the clutch and shifting gears presented problems. We initially thought I had a stroke, so we went to the closest hospital in Youngstown, OH, was hospitalized, took some tests, had a CT scan, and ruled out a stroke. We ended up being referred to the Cleveland Clinic (CC) where a small brain tumor was located on my right parietal lobe near the surface of my skullcap. This affected my left side and sense of where those extremities or body parts are in space. The original biopsy and pathology report came back with a diagnosis of a benign Oligodendroglioma brain tumor (BT). It was recommended that we observe the BT for awhile with MRI scans as the tumor was not interfering with my good quality of life. Resection surgery had the possibility of doing damage, so putting surgery off as long as possible seemed the best route to go at that time. I then had my first intravenous chemo treatment, was taking Tegretol (anti-seizure meds), and was observed w/MRI scans 6 months apart until Dr. Gene H. Barnett, Director of Neurosurgery at the Cleveland Clinic, OH recommended I have tumor resection (craniotomy) surgery on Jan. 11, 1993.
I was seizure free for 10 years thereafter living a fairly normal life. That is until late 2004 (between Christmas and New Years) when I had a re-occurrence of a much more pronounced focal seizure episode while awakening. After my Dr. consult at CC I started taking Keppra, a newer anti-seizure med which is much safer for your kidneys, liver and other bodily organs to handle. An oral chemo treatment in Feb. of 2005 was also tried but did not help shrink or stabilize the BT cells. I also started a new, thankfully brief, high dose Accutane oral dosage treatment protocol in April of 2005 which showed promise clinically but also did nothing to shrink the tumor cells - actually may have contributed to basal cell growth which is now being checked regularly by my Dermatologist. I was then recommended for radiation therapy treatment later on in August of 2005. After my Radiation Therapy I received clean MRI scans which was very encouraging.
At that time we were also in the process of selling our home in OH and moving to CA. I also was finally able to qualify for SSI Disability before our move and was actually backdated for qualification to June of 2004. Hard to believe, I really lucked out there, because most of the stories one hears are taking an average of 2 years to qualify. I suppose having a brain tumor speeds things up a bit. I then continued on with a fairly good quality of life. It still was a very stressful time for me and my wife, since our home in OH took 9 months to sell with only 1 bid offered, and it almost fell through 2 weeks before our move to CA. Thankfully, our Realtor convinced the buyer to reconsider and we closed the deal. At the same time my wife's private practice in Alliance, OH did not sell as we had hoped or planned - actually sold at a loss after our move with personal debt owed her vendors – adding to our stress in CA. We are now left with quite a few unsecured debts unpaid, our credit ruined, and my future medical bills surely to escalate.
I had a recent major focal seizure episode re-occurrence on my left side on April 13, 2010 with a longer lasting seizure for about 45 min. Any previous one had lasted 1/2 to 1 min. at the most. The seizure was more involved with my belly, face and tongue feeling numb. These types of seizure episodes have a name called the "Jacksonian March" seizure as described by my Neurosurgeon Dr. Bob Carter, UCSD. Associated more with describing a form of "Epilepsy" than a brain tumor seizure, though in my case, it is very close to describing my seizure episodes. The seizures afterwards were more frequent and intense, though lasting only 1 to 1/2 minute each. I then started and completed a 4-1/2 month clinical trial at UCSD, CA - Moores Cancer Center by Neuro-Oncologist Dr. Santosh Kesari. It did not have the effect we were hoping for, though we both suspected it wouldn't. Finally, it was recommended that I have my second resection (craniotomy) surgery in the same right parietal lobe by Dr. Bob Carter, Director Neurosurgery at UCSD on Monday, October 25, 2010. at La Jolla UCSD Thornton Hospital. The amazing thing is I was in and out of the hospital in 2-1/2 days and able to walk 1.5 miles the day after that. WOW! I am so very fortunate to be that rare, but growing, BT patient population who has survived another fender bender while other BT patients have had a train wreck. The pathology report came back very encouraging with no mixing of different tumor cell types and only Oligodendroglioma cells noted. Though my grade II is now just approaching grade III level status. So, I am left with doing a more concentrated radiation therapy treatment for less time in combination with oral chemo (Temodar) to stabilize or shrink what tumor cells were left behind that could not be removed.
My next Dr. consult will detail a treatment plan.
NOTE: After our move to CA I was introduced to the San Diego Brain Tumor Foundation (SDBTF): www.sdbtf.org and their support group member organization at an information table when I attended the 2007 National Brain Tumor Society hosted "San Diego Brain Tumor Walk" at Mission Bay Park. I have been involved with SDBTF ever since and highly recommend getting involved and supporting their mission. This foundation should be used as a model for caring and support of brain tumor patients in every city in our nation. How SDBTF Has Helped: SDBTF has helped me share my experiences and advocacy by giving hope of surviving a brain tumor diagnosis, attending support group meetings and getting to know our BT patient community. I help SDBTF by offering my pro bono graphic design communication services, BT experience and lend my assistance for offline/online media content creation while helping collaborate with local businesses and organizations by meeting and reaching out to the San Diego County community to increase SDBTF awareness. SDBTF has been there for me with financial assistance for my medical premiums and co-pays, plus partial mortgage payments on several occasions when we needed them the most. SDBTF direct assistance programs and support for BT patient's day-to-day needs is an invaluable resource for many patients who would be in deep dire straits without such necessary life-sustaining assistance. SDBTF's all-volunteer, grass-roots organization is an amazing group of people dedicated to caring for BT patients and their needs. I am truly blessed to have SDBTF brought into my life. San Diego is fortunate to have SDBTF in their community as well.
We all hear about supporting causes to fund a cure but how many causes do we hear about supporting funding for “Care and a Cure!” They both go hand in hand helping those in need TODAY and TOMORROW! SDBTF fulfills that need and will continue doing so with the support of sponsors, donors, in-kind services/items and the many volunteers who give of their time, talents and efforts helping support our brain tumor patient community.
Update 07/5/2011
Thanks for your inquiry. My 2nd resection/debulking in Oct. 2010 revealed my tumor is now a stage III diagnosis and getting closer to my motor control strip along with a cloud-like image on MRI scans of undetermined origin. So, I was left with doing a more concentrated radiation therapy treatment for 10 days straight in combination with low-dose oral chemo (Temodar) capsules to help stabilize or shrink what tumor cells were left behind that could not be removed. This began on 01/04/11. 6 weeks ON and 3-4 weeks OFF. This cycling ON and OFF of treatment should go on for about 1-yr. My Neuro-Oncologist Dr. Kesari, UC San Diego has recommended this protocol for my type of tumor. For now my low-dose (150mg) Temodar capsule treatment protocol seems to be shrinking the remaining BT cells like it should.
Then, on May 9th, at the SDBTF charity golf fund raiser, of all places, I had another more prominent seizure episode that involved my peripheral vision with an aura-like sensation and my left hand going a little numb, along with my left side face and tongue feeling a little numb. This has happened to me before though it scared me a bit so I immediately contacted Dr. Kesari, thinking I was having another lesion occur like last April 2010. He said to up my Keppra another pill a day to help settle things. It did, and I finished my 2nd cycle of chemo shortly afterwards. Recently I came down with a hacking cough and head cold that put off my 3rd cycle of chemo but I should be starting again this week.
I am lucky because I have full use of my right side and just a slight deficit on my left side, mainly my left foot - where I cannot exactly sense where it is in space. Not automatic as one normally would. My balance is off and I tire easily. My focus on tasks and daily living is straining my ability to bounce back from this new normal but I keep on keepin' on.
Ted
