As you may already know, my husband of 24 years (in one week), was diagnosed with a brain tumor on July 9th. Three weeks before, he began having episodes, which lasted several minutes that made him feel spaced out and left him sweating and with a headache. He had 16 of the episodes in a 48 hour period. We eventually found out that these are called seizures and were a sign that something was going on in his brain. After multiple MRI's and two days at Medical Center of Plano, he had a biopsy done on the tumor that was residing in the left frontal lobe of his brain, the area that controls speech, memory, sight and apparently taste. The neurosurgeon was 95% certain at that point that it was benign (though still dangerous). At the two week follow-up, we were given the results from the Mayo Clinic that showed it to be a grade 3 malignant Anaplastic Astrocytoma. We were told it was inoperable and incurable.
So, the roller coaster began that would be our life for the last 3 months. A consultation with the top neuro-oncologist at UT Southwestern confirmed that they would not operate and would use traditional treatments of radiation and chemotherapy. We decided to make a trip to MD Anderson to get a third opinion. That was an amazing day. We saw 10 different people and by 3:30, were told that their top 4 surgeons would recommend surgery. We got the number two doctor and were thrilled with the news. We were quite certain #2 has to try harder! On August 12th, Dr. Prabhu performed an 11 hour surgery. The long day went fast with many good friends and family in the waiting room with me in Houston. We were released that Friday to go home and recover with plans to follow up surgery with traditional therapy at UT Southwestern.
Steve has done so very well physically. He started walking with me right away every morning. Two miles, which was not always easy. He is still struggling with memory and finding the words when he talks. Editing is not coming easy at this point, but he's had a great attitude and wants to do everything he needs to do to get better.
We met with UT Southwestern chemo and radiation doctors last week to get the next phase started. After we left, Steve was not at all happy. He said that the doctors and nurses did not give him anything that made him feel hopeful. I was determined to get more from them to get him positive again. This week, we had many conversations with them that didn't give us what we needed. Conventional radiation would probably shrink the tumor initially, but the damage that it would do on that part of his brain was irreversible and could actually activate new cancer cells. We just didn't feel good about any of it. Why extend life if the quality of life would not be good? I knew he would hate that more than anything.
So, we started talking to anyone and everyone who could tell us something about alternative treatments. Our good friend, Dr. Joe Cleaver, referred us to Dr. Mark Rosenberg at Integrative Cancer Therapeutics in Florida. He is the top doctor in this field in the US and we started having conversations with him. He had the son of one of his patients call me and tell me about their experience, which began quite the same way ours did in May. His Mom is 62, had been very active and had a very similar situation as Steve. She started with Dr. Rosenberg and was in remission on her last MRI. He used a combination of therapies and we would still do the chemo, but with half the dosage. Most of the other drugs will not be covered and will be very expensive. We will be looking at about $3000/month for the next few years. Bottom line: Doesn't matter if he can live with a good quality of life. I don't think any of us are ready to not have him in our life, so that part of the decision was easy. Whatever it takes.
Though we have chosen an unorthodox approach, it just feels right for us, and we have the support of family and friends on this. You can google him and look at his website. We have researched all of his treatments and feel like he's our best hope. We will not be doing radiation and will be working with Dr. Rosenberg remotely. We will do an MRI this week for a baseline and do another in a few months. We are feeling like a weight has been lifted. We so appreciate your thoughts and prayers during this time and all of your support.
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