For what it's worth, this is the start of a chronology of what we went through after finding out that Anne had a Glioblastoma Multiformae brain tumor. I am a Registered Nurse, graduated from nursing school in 1968, and had never heard of this kind of tumor. So, we had to start from scratch.
Marti,
Anne's mom
============
A few days before her 27th birthday Anne telephoned, trying to be upbeat about it, but her attempt was predictably unsuccessful. “Guess what, mom, I have a brain tumor!” I thought it was a bad joke. But it turned out not to be a joke at all. A neurosurgeon in Ocean Springs, Mississippi, where she was living at the time, hundreds of miles away from our home in Texas, had told her that morning that she had a brain tumor and needed surgery ‘as soon as possible’. Then, when he asked if she had insurance, and she said ‘no’, he told her that the surgery could wait a while, and that she needed to go home and find out how she would pay for the surgery. That’s what made me so mad that I cried. She was all alone with him in his office, no family to support her, no one to even drive her home after hearing this news, and his priority was how she would pay for the surgery.
To summarize what came next, as best I can: We drove down and got her, brought her home to Texas, and by pure fortune found a caring surgeon who happened to be on duty in the clinic at John Peter Smith the day we had an appointment. She qualified for medicaide and SSI for 6 months only. That meant the first surgery was paid for, and also the radiation treatments. She was doing pretty well for a while.
Unfortunately, the type of tumor she had was expected to recur, and it did. When it came back, the surgeon was kind enough to see her in his office at no charge. (You see, after medicare kicks in, SSI and medicaid are canceled, and medicare doesn’t pay for near as much as the other programs.) We had to go to the ER of the hospital and call her surgeon to get admitted to the same hospital (not JPS) where the first surgery had been done. We all knew about the quality of care at JPS, and didn’t want her to have to go thru that. (This experience has made me realize the only way to really fix the public medical system in this country is for those who legislate its funding and guidelines to be forced to use it exclusively -- both for themselves and their entire family. It would not resemble its current condition for long.)
The second surgery was followed by a third, because the sutures inside her skull didn’t hold and had to be replaced. The hospital had to absorb the cost of the two surgeries and the ICU care, because medicare doesn’t cover these things, not for this kind of disease. When the tumor recurred again in only a few weeks, the surgeon couldn’t do any more. He told Anne she needed to go find some chemotherapy to shrink it, and come back when it was smaller.
We desperately started searching for the best place to take her for chemo. The oncologist at JPS only offered one kind of chemotherapy for this tumor. It was the same medication of which she had taken one dose immediately after the first surgery and decided not to take any more because of the effects it had on her.
We were directed to Duke University and a doctor who had been on television for his success in treating this kind of tumor. There were long weeks of paperwork to do before we were told that since she didn’t have insurance, we should not be contacting their hospital, but the medical center closest to us, M.D.Anderson in Houston. So, we tried to get her seen at MD Anderson, only to run into the same red tape and paperwork delay before we could get an appointment to see anyone there. This process took precious time -- at least four or five weeks went by, maybe more, it seemed much longer. Meanwhile the clock was ticking, the tumor was growing, and she was losing control of her body as we watched helplessly. She was gradually losing her sight during this time, her vision was getting darker, like a gathering mist over everything, she said. She was also slowly losing control of her left side -- arm and leg both, but very, very slowly and gradually, so that it was hard to pinpoint when it got so bad.
Anyway, she did get admitted to MD Anderson, an outwardly beautiful facility, btw, and saw a doctor there, who told us what he thought would be the best ‘clinical trial’ for her. We didn’t know that there would be absolutely zero effect on the tumor from the medications he prescribed. We trusted him to be giving her the best option to help her stop the growth of this thing and even shrink it.
Oh, I forgot, another delay in the meantime -- she had, in desperation, succumbed to fear of uncertainty and taken one dose of the chemo that had been given to her by the doctor at JPS in between applying to Duke and acceptance at MD Anderson, while we waited to hear something. This was the same medication that had been given to her before. She really didn’t want to take it, because she didn’t have any confidence that it would help, but at least it was something to do while she was being tortured with the waiting. Here's the catch: as a result of her taking it, she had to wait an additional month before even starting the chemo from MD Anderson. The waiting and waiting, while the tumor grew, was the greatest torture for all of us, watching her condition deteriorate, but not knowing anything ... anything at all ... to do to find some real help.
Her condition continued to worsen, and after a few months, she went on hospice and died a few weeks later. A glioblastoma multiformae tumor is fast working when left to its own devices.
To back up a little, I am a registered nurse, so theoretically I should know what is needed to find the best treatment for my own family and find a way to make it accessible. Knowing how the system works did help some. I don’t know what people do who don’t know the ins and outs of how to get things done that I know from working in hospitals.
I started researching immediately when they told us what we were dealing with. Only a few weeks before she died, my father-in-law send an article about a doctor in California who had had a much higher rate of success than most with this type of tumor. Wierd, but we had not run across his name in all the research up to that time. It was too late for the treatment he might have done only a few months before, so we will never know if it would have helped.
The strangest thing about the doctor in that article was that we had been in touch and Anne had actually seen a member of his team, back before it was too late. She was still able to walk on her own and still had most of her vision, after the second round of surgeries. She made a trip to California to attend The Simonton Cancer Center Patient Program, and around the same time, through the internet, we had found and spoken on the phone to a man who had survived the same kind of tumor for several years (survival beyond two years is extremely rare) and was on staff at Cedar Sinai Hospital in LA. He agreed to see her, and she drove to his office for an appointment while there for the other workshop.
Maybe because she didn’t have insurance, maybe for some other reason, he did not recommend that Anne see his Neurosurgeon, Dr. Black, but instead recommended the Duke University doctor mentioned above. It was only months later that we discovered that the expert we had been looking for and hoping to find was, possibly, right there at Cedars.
My husband is self employed, he owns a small tile and slate roofing company. We have five children besides Anne, and have never had the money for health insurance. We instead decided that we would put what money we have into vitamin supplements and pay attention to maintaining our health. My husband did the math when the kids were small, and figured that the amount of money needed for insurance coverage for all of us would be higher than if we had pay for emergency room care and even surgery, if necessary. But, no one can plan for a glioblastoma multiformae brain tumor. I’ve been told that even if we had the best insurance available, it still would not have covered the expense of Anne’s treatments.
We have a good friend who visited from New Zealand shortly after Anne died. We were telling him the saga of our struggle to find the best treatment during the short time we had between the diagnosis and the recurrance. He said in a surprised voice, “Didn’t you have a social worker assigned when she was first diagnosed?” He said every country he had ever lived in had done that automatically when a catastrophic illness was diagnosed. That would have been unimaginable help, to work with someone from the beginning who knows about all the choices available would have eliminated a lot of time spent waiting and Anne might still be with us.
| « | (index) | » |