We arrived at the doctor’s office at 5:00. We waited awhile before getting in to see him. He was on a criminal case for jury duty so he was slightly delayed. He spent close to an hour with us.
The diagnosis we have been waiting on is a primary mixed oligoastrocytoma, grade 3. What that means is it is not the worst (grade 4) but it is not the best either. It is cancer, therefore it will require more treatment. He suggested a combination of radiation and chemo. He said that five years ago this combination might not have been prescribed, but that the chemo medicines have come a long, long way since then. He also said that the tumor had probably been there a long time and because it was in the “silent area” of the brain it did not make itself known until it got big enough to cause the memory problems. We of course have more questions for the oncologist about different treatment options. I think that those will be answered when we meet with him. Until then we are assuming that the chemo/radiation combo is the normal protocol for this type of cancer.
Glioma tumors are infiltrative and have fingers that spread throughout the brain. He removed 90% of the tumor and the other 10% is the part we have to be concerned with. It is not curable, so the goal is to control the growth with radiation, hoping for a remission and to extend the quality of life. The tumor is antiplastic which means it contains two gliol sub-types. Some of the tumor was grade 2, and other parts were grade 3. It seems that it was becoming more aggressive. But, to me, it seems that the fact there was some grade 2 means that it was on the lower end of three instead of the upper. He did not give us a prognosis, as far as a timeline. Too much depends on how she responds to treatment etc… He did say she was very healthy and has no other issues that would cause her to not respond, so he feels treatment will be successful. He was amazed at how well she was doing, and said that from the time he saw her at the hospital she has improved 75%. He felt that with that rapid improvement her chances of regaining most of her function are very good. He also said she is the most impatient person he has treated. She was trying to get him to give her how many weeks the treatment will take. She also wanted to know how long until she could drive so that Ray will not have to take her to all her appointments! We assured her that we will take turns getting her to her appointments, so there is no need to worry about it.
He also examined her eye. There are two different things going on. One is related to the surgery, the other is not as far as he can tell. Her eyes are not tracking together, they are kind of out of alignment, causing double vision. He says this is caused by the surgery, because even though he did not touch her optic nerve the tumor was close enough to disturb the environment of it. This should rectify itself over time, like in a few months. Of course, that time line did not make Louise happy at all. She said that of all the things she learned today that the vision stuff disturbed her the most. The other issue may be related to a problem she had in her eye before her surgery. He said that when the eyes are out of alignment sometimes it causes other problems that may have been there before to get worse. He recommended that she go back to see her eye doctor in a month or so once the brain has had more time to heal. He could not guarantee that it would be fixable, because it is within the eye…not in the brain. This is what upset Louise.
We asked about her appetite and he said that should come back once she is eating food she likes. She refuses to eat at the rehab center because the food is “horrible.” Already when Ray takes her out for dinner she eats better than she does at the center. He went over her medicines with her and told her which ones she needs to keep taking and which ones are optional. She wants to be off of all of them, right now. I think he convinced her that she could work towards that goal. The fact that he told her she can go off of her pain meds if she wants and some other med seemed to satisfy her…for the moment.
Her attitude was good. She didn’t break down or anything. She knew going in that she would probably need more treatment. He had prepared her for that, so this wasn’t really a surprise. She doesn’t like the idea of chemo at all. She hated it before and she got quiet when he brought up the possibilities. There is one drug that is a pill, but the other one is IV and that isn’t something she wanted to do again. He says the drugs are well tolerated and that they are different from breast cancer meds. All of this will be discussed again with the oncologist I am sure. She seemed resigned to have the treatment he recommended, though she said she is dreading it and that it will take too long to finish the course.
Ray plans to call the doctor and ask more questions that he didn’t feel he could ask in front of Louise. The next step is to wait for the doctor to call us with the appointments for the radiation doctor (same doc she had before) and the oncologist. Those should be within the next 2 weeks. In the meantime, she has been released to go home with home health care. She will leave the center tomorrow and she could not be happier. The doc said it was fine for her to go home since she was doing so well. We have already hidden the car keys from her!
Thank you again for the prayers. Please pray for Ray’s strength to keep up with her. Trust me, he will need it. As she continues to improve, she will settle down at home more and more. The doctor expects her to keep improving and that is a relief to hear. We know that our God is very big and a tumor is within his power to stop. We are hoping and praying that he will leave Louise here with us for a while longer, but knowing that she will win either way.