probably shouldn't have

I question the insurance company about why they had approved the previous topotecan treatments but were denying it this time. I was told that the person who approved it probably shouldn't have. That the request never made it to the medical director, who I was assured, would have denied the request.

crackpot idea

Marie's tumor is supposed to be a benign Grade II growth that was generally treated with surgery and or radiation. Topotecan is a chemical that was being used for other forms of cancer. So why would the FDA have ever approved the chemical for neurocytoma. For all I know the FDA may have never been asked to consider it. I don't know. But the way the insurance company said no it was if they were trying to protect Marie from some crackpot idea. At least that's how I interpreted it.

denied

We never thought we would have an issue with the insurance company with the topotecan chemotherapy since Marie already had topotecan earlier, but we were wrong. Our insurance company denied to pay for the treatment because, they said, that it wasn't FDA approved for this particular type of tumor.

back to topotecan

It was felt, by the medicals, that the topotecan was not given to Marie long enough to be effective because Marie got the spinal fluid infection that cause the treatment to stop, after only a few applications. They were still confident that this could be a powerful drug that could fight the disease.

a few options

The medicals came up with a few options but presented only one to us. It was their belief that Marie should go back to the topotecan. The first time she tried it the chemical was delivered into the brain through the reservoir that was installed in her head. Not this time. It would be given intravenously in the oncologists office.

cooperation

The medicals took some time to talk this out out. MD Anderson presented it back to their tumor board and we waited to hear. Our oncologist was very active in the process as well and together the two teams of medicals cooperated to come up with a solution.

back to the story

With Marie home and moving into the year 2010 we were set to allow chemotherapy to do it's work. She continued on the temozolomide capsules until an MRI revealed that the treatment was not working. The tumors continued to grow. The temozolomide was discontinued and now it was back in the medicals hands to figure out the next step.

back to today 11/17/10

Sorry, it'd been a while since I blogged but I've been really busy. Let's get caught up on the current situation. Marie is talking the acne medication as well as a medicine to lower triglycerides. She had an appointment with her oncologist today to check her blood and general overall well being. She will do another month of this treatment and then an MRI in January. So as long as no problems come up we can just enjoy the holidays.

temozolomide

Marie was still on the temozolomide capsules at this time. We didn't know if they were working, but it was a powerful medication, saved for the fastest growing most dangerous brain tumors. Maries' tumor was slow growing and supposedly benign. Since nothing else seemed to work, this was still the medication of choice.

her choice

Marie was finally free to stay home and enjoy her life. Even though it meant staying home alone while we went to work each day. She was free to put on the television or radio. Eat what she wanted. Walk to the mail box. What she choose to do was sit on the couch and to nothing. But it was her choice and we supported it.

the blog

I decided to start this blog on New Years Eve 2009. So much had happened over the previous nine years. So many tumors and procedures. Each time created new challenges and problems. There were no free rides with this desease. The reason that I write this blog is to keep all of those things available to anyone who may be going through this and needs to know they are not alone.

still slippers

Weather was terrible in December 2009. Snowstorms and freezing cold temperatures made it difficult to take Marie out. She was still only able to wear slippers because her feet were so swollen from all the steroids she had taken. Even though she was off that medication at that point the side effects took a long time to subside. We decided the best thing to do was keep Marie in doors as much as possible and bring the holidays to our home

on our own

Finally Marie was done with speech and occupational therapy, and there was not going to be anymore daycare. We were on our own. All that was left now was to get better. Destroy the tumors. She was still taking the temozolomide capsules. We had hope that they would work. It was almost the holidays and time for a new year. I couldn't wait for 2009 to end.

life

At this point we are in December 2009. A month filled with snowstorms, cold temperatures, and no solutions to the growing brain tumors. Marie would no longer go to adult day care. She was willing to fight to stay home. Yes she had memory issues and some confusion, but she demanded dignity. Good or bad, right or wrong she wanted to live her life. It was time for me to stop taking care of her and begin to support her right for a quality of life.