Judy Bourgeois

Information Journal Guestbook

I was first diagnosed in April 200 at 53 years of age. I noticed that I could not see colors very strongly in my left eye. I immediately went to my eye doctor, who, after several weeks of testing, told me I needed a neurologist. Through a friend at work, I was able to get an appointment with a doctor here in Baton Rouge after several weeks. At my visit with him, he told me I needed an MRI. He scheduled one within a week or so. I was not prepared for that. Next visit he told me that I did have a pituitary tumor and needed surgery. Had surgery in July 2000. When I visited my surgeon 2 weeks after surgery, he told me that I would have to find another doctor because he did not know what I had. A few days later he called me at work and told me to see a local oncologist. Meanwhile, he was able to tell me from the biopsy that I had a "chordoma". We visited the oncologist who wanted to do radiation even though he said he had never worked on this tumor before. We simply told him that we wanted him to send everything off for a second opinion to Dr. Norbert Leibsch at Mass General. This turned out to be a lifesaver. Dr L. called me from Mass Gen and told me I needed more surgery - there was still a large section of tumor in my head that needed to be removed and that I needed to see Dr. Ossama Al-Mefty in Little Rock, Ar. Dr. L said that OA was one of 3 doctors in the whole world who could do this surgery. We saw OA in January 01 and had surgery 3 weeks later. This tumor was in the clivus and I had transphenoidal surgery (not fun). In May 01, I was off to Boston for proton beam radiation that summer. Went back to work in August immediately upon my return. I was the Catering Director at Embassy Suites Hotel in Baton Rouge, La. for the past 9 years. After a few months of the radiation, I lost my pituitary gland. I started taking prednisone and synthroid. I immediately gained about 20-30 lbs the first month. People at work were beginning to make fun of me, asking if I were pregnant. I was 56 years old at the time. I continued to do my job - working long hours each day and some weekends. By 2004, my co-workders were tired of my doctor/tumor situation and asked that I be released. I resigned and had to change my lifestyle of being beaver busy to one of a housewife - what a change. I loved my job and the service to guests. I tried two other jobs, but it was never the same or maybe I wasn't the same. I know that I have definitely changed: I eventually gained about 60 pounds and had a heck of a time losing it. I have not worked since May 07 and managed to lose about 30 pounds even with exercising every day and watching what I eat. I spend my with my retired husband (he had to retire early to keep our health insurance). Now we worry what Obama will do with our health coverage. I really miss working. That was a really hard adjustment to make for me. It's been 10 years since my first diagnosis, but I credit that to my husband and all my great doctors. I had my last surgery in March 08 in Little Rock. After many visits to Little Rock, Dr. OA told me that he did not giet the whole thing. On my last visit (Dec 09), he said that he cannot do any more surgery only gamma knife. I will do a MRI this Thursday here in Baton Rouge. I have a lot of trouble with my eyes. I began to experience double vision very badly about 4 years ago. I just woke up one morning with it. It was so bad it was hard to drive on a two way street. I had to close one eye to drive (I still do for safety). My right eye turned in about 3 years ago because of the palsy of the 6th nerve. I had surgery at Tulane in New Orleans to correct that. Now I am going to see a plastic surgeon to correct my drooping lid. My re-occurence of the tumor detected in the MRI of 9/11/07 was in the cavernous sinus.
There is a great neuro-opthamologist here in Baton Rouge. Here name is Dr. Angela Lewis and she has been a lifesaver to me. She knew in Sept 07 that I had tumor before my MRI. I really trust her. She tells me more about my condition that any of my doctors. After it all, I am happy to still be here even though I hate that we are spending so much of our IRA on my medial bills. I would be happy to speak to anyone who needs an hear.

Baton

So we can do research and beet this thing if not for ourselves, for the young patients.