My Nonprofit Reviews

In the past six years I have had been treated for three unrelated cancers, kidney, oral and breast, all requiring surgey with the breast cancer requiring radiation. I had a potentially serious gastric problem treated and was diagnosed with beginning glaucoma. Both my husband and I cataract surgery and my husband had surgery for colon cancer. This year I had a very complicated reconstructive surgery for the portion of my mandible removed due to the oral cancer. This week marks 3 years since I had surgery for removal of almost half of my lower jaw with the teeth. Thanks to the vigilance of my dentist and oral hygenist the cancer in my jaw was discovered at a very early stage and I required neither radiation nor chemotherapy. Previous to the surgery my husband and I weighed the options and decided to wait until later to decide about reconstruction. When I determined upon the advice of my dentist to consider reconstruction, I began to research "mandibular reconstruction." I discovered the Oral Cancer Foundation and found both solid medical information and support. I have a scientific background and was very impressed with the technical aspects of the main site. The information, support and inspiration from the forums helped me in my decision to have the surgery. As a result of my contacts with OCF I realized that although I had some minor disfigurement and difficulty in eating,I had been spared the horrendous suffering and possible death from this devistating form of cancer. I decided that I should become a volunteer and became a state co-ordinator. My initial surgery for oral cancer was about a month before Hurricane Katrina hit our hometown - New Orleans. When we evacuated on Sunday to Houston I had only left the house for doctor visits and still had a gastric feeding tube, severe inflamation of sutures on my chin and a fissure in my jaw which required treatment several times a day. I had appointments scheduled that Monday with an infectious disease doctor for my sutures, with the ENT oncologist Tuesday, a swallow test Wednesday to determine if the feeding tube could be removed and with the ENT again on Thursday and probably to have the feeding tube removed that week or the next. I was to see my regular internist the following week. Madam K changed that schedule. I lost contact with my doctors and was on my own. I was fortunate to find the care I needed in Houston but what should have taken a week or two took almost two months and visits to the emergency room and seven doctors. I firmly believe that had I found the Oral Cancer Foundation before this, I would have been in a better position to obtain the care I neeed. I now know that it was beyond fortunate that I did not have serious complications due to the interruption of medical care. The support of the posters on the forums has helped me in my personal life as well. I received moral strenghth when my son was in Iraq. Last year when I found that I had breast cancer which required surgery and radiation the support from the posters on the OCF forums helped me face that without the great fear that I would have had otherwise. I had learned much about the effects of radiation and the fatigue it engenders. From the postings I have been able to recognize and deal with many of the emotional problerms related to cancer which I had attributed to "post Katrina stress." I have learned how to relate to my caregivers and the stress they fell as well. I learned that it is important to participate in support groups as a participant to give and to receive advice and information. I have come to recognize and encourage others, that it is necessary to pay attention to symptoms and have all testings and exams relevant to one's age, genetics, sex, risk factors, etc. and to seek out and insistupon the best best possible treatment.

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