In March of 2009 my wife Roberta was diagnosed with a brain tumor AND Ed has been diagnosed with NLPHL, a rare form of Hodgkins Lymphoma. Roberta had GammaKnife treatment for her tumor and seems OK (Future MRI tests). Ed will have R-CHOP chemo for 5-6 months.
Sunday, March 29, 2009
It will be interesting to see where this blog goes. I would like to provide info for people who would like to be proactive in their treatment for serious medical treatment. Roberta has insurance. I am in the VA system. We live in a small town in Colorado and both count on Albuquerque resources for major medical treatment. We are currently timing our Abq appointments so that we can combine a trip.....250 miles. Roberta has a lot of family support in Abq. When Roberta was diagnosed, the local GP assumed that it would be removed with surgery and set us up with a neurosurgeon at University of New Mexico in Abq. We proceeded to do days and days of internet research and discovered the less invasive CyberKnife and GammaKnife radiosurgery treatments. By the time we met with the neurosurgeon Roberta felt very empowered to request to be considered for GammaKnife treatment. We will never know if the neurosurgeon would have presented all of the options if we had just showed up for treatment. I'm beginning to believe that if your MD sends you to a "specialist" who does surgery, then you will indeed get surgery!
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