So this is interesting...
When my Mom went to see the Oncologist she had recommended that my Aunt and my Mom go see the Neurologist. The Neurologist would discuss performing chemo into the spinal fluid. This would not be a cure, but could potentially lengthen her life but at the risk of some harmful side effects.
We discussed this with my Mom, and after some thought, she determined that she didn't want to get a port installed in her head (For the chemo) and that she didn't want the side effects.
At this point, we ordered in Hospice. Hospice and Home Care are very similar. However, Hospice basically means that you no longer receive treatment. You just have Hospice taking care of you.
Well, I called the doctor after setting up the Hospice to cancel my Mom's appointment to see the Neurologist. At the time, I didn't know that the doctor had to sign off on Hospice.
So the doctor calls my Mom's house and speaks to my Mom. She asks my Mom if she would like to see the Neurologist and if she wants to be on Hospice. My Mom tells her that she does not want to be on Hospice. So the doctor doesn't order Hospice.
I discuss this with my Aunt and my Mom. My Mom was confused, and said that she did not want the treatment. So I called the doctor to get it straightened out.
The doctor was not pleased. She said that my Mom was very clear in stating that she did not want Hospice. I told the doctor that my Mom was confused and that she did indeed want it.
The doctor said that she had asked my Aunt and my Mom to just go and talk to the Neurologist. That they could make a decision about what they wanted to do after meeting with him. And she did not think it was a good choice to enter Hospice before meeting with him.
I thought about this for awhile, and granted, had I known that before ordering Hospice, I might have agreed to the same thing. However, my Mom and my Aunt were very resolute that she did not want further treatment. I've spoken to my Mom several times about this. So I told the doctor, "Look, we've discussed it, we know what she wants, let's get Hospice." and so the doctor ordered it and we hung up.
So Hospice ordered, that was fine.
But then later, a mysterious female caller asked for my Mom on the phone but when my Aunt asked what it was about, they wouldn't say. After asking three times and not being able to say why she was calling, she said she'd call back later.
It's our opinion that it's the doctor trying to reach Mom to make sure she's not being put on Hospice against her will.
Let me tell you. I do a lot of reading on my Mom's condition. I sink my teeth into the stuff that is out there to get an idea of what her options really are. Chemo in the brain fluid is not really helpful. The blood-brain barrier means that the cancer can hide outside the range of the chemo and then reinfect. Meanwhile the patient pays thousands and thousands of dollars and their condition does not improve.
If I thought we could get six more months out of her without her being nauseated and sick or having brain damage. I'd of pushed her to have it done. But I can't see any benefit for her. At some point there has to be some dignity. She'd like to have some hair on her head when she's laid to rest, believe it or not. As right now she is bald, and further chemo would just continue that trend.
Further... Even if the chemo COULD reach the cancer. Because she was administered radiation to her head, her brain tissue will experience necrosis and die anyway. It's an unfortunate side effect of head radiation.
But still, I weigh these choices in my mind and what I think is best for her. And I also keep her wishes in mind. Doctors can fill you with a lot of doubt, and they want to provide maximum treatment options and then shrug when the patient expires.
When my Dad was alive, and had his stroke, the Clinic doctors inquired with my brother and I if we wanted to allow them to use a new experimental drug that they would insert into the vein in his head where the blockage has occurred. This would dissolve the blockage and allow the blood to reach the area of the brain that was being starved of oxygen. Even though, by now most of that tissue was dead, we figured it was worth a shot if it meant my Dad had a chance at getting better.
Unfortunately, what happened next was that when they applied the chemical to the blockage, it shrank and then traveled further down the vein and got stuck again, giving him another stroke in another part of his brain.
How were we supposed to know this would happen? We didn't. Had we not treated him, he might have just had a normal one-time stroke and gained back some motor skills. Instead, we now had a paralyzed father.
So I am skeptical now of advanced treatments with poor track records. And that is what the chemo in the brain fluid is. It's an experiment for the doctors to learn more at the sake of my Mom's livelyhood in the remaining time she has left.