Gimme a break
Aug. 25th, 2017 07:28 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
randy_byersThe latest MRI is bad news that's paradoxically good news. Going into it I was thinking that if it showed improvement of the tumor (which I thought was likely) I was going to press the oncologist to tell me how much longer I was going to take Avastin and what she could do to help me feel less crappy. As it was, the MRI showed that "the tumor (non-enhancing portion, whatever that means) is growing into both thalami giving me a "Parkinsonian walking and getting up problem." It had also occurred to me in the past couple of days that the tumor might be growing, since my problems of failing strength and balance and fine muscle control have been getting worse. At Crooked River last week I frequently needed help getting off the couch and out of chairs.
The paradoxically good news in this is that my oncologist, Dr Taylor, feels that the treatments are making me worse rather than better, particularly when it comes to quality of life, although she was also worried that the Avastin was encouraging the tumor to spread and go deeper into the brain.So she's recommending that I take a break from chemo, Avastin, and the Optune and let my body find its current balance and then reassess how I want to proceed. I think I've exhausted all the normal treatment options at this point, so I'm not sure what would next anyway. Clinical trials? Isn't that the Hail Mary stage of thing?
In the meantime I'll continue with physical therapy to work on my balance and strength, although she thinks my problems with strength are neurological at this point rather than muscular. I'll have an occupational therapist come out to assess the safety of the house for someone in my condition. She can also arrange for some home care from hospice, even though she doesn't think I'm actually down to my final six months, just to get a sense of what services they offer when I do need them,
I'll continue to get an MRI and visit Dr Taylor every two months and we'll see how things go. I'm soooooo ready to take a break from treatment that I have to be careful not jump to the conclusion that I feel better already. I'm still basically an invalid who needs to keep his eyes on the road and his hands upon the handrails. Let it roll, baby, roll. Until about 8:30, or whenever I'm ready to go to bed. Quality of life, that's what I'm all about! May it improve a bit during my vacation from treatment.
The paradoxically good news in this is that my oncologist, Dr Taylor, feels that the treatments are making me worse rather than better, particularly when it comes to quality of life, although she was also worried that the Avastin was encouraging the tumor to spread and go deeper into the brain.So she's recommending that I take a break from chemo, Avastin, and the Optune and let my body find its current balance and then reassess how I want to proceed. I think I've exhausted all the normal treatment options at this point, so I'm not sure what would next anyway. Clinical trials? Isn't that the Hail Mary stage of thing?
In the meantime I'll continue with physical therapy to work on my balance and strength, although she thinks my problems with strength are neurological at this point rather than muscular. I'll have an occupational therapist come out to assess the safety of the house for someone in my condition. She can also arrange for some home care from hospice, even though she doesn't think I'm actually down to my final six months, just to get a sense of what services they offer when I do need them,
I'll continue to get an MRI and visit Dr Taylor every two months and we'll see how things go. I'm soooooo ready to take a break from treatment that I have to be careful not jump to the conclusion that I feel better already. I'm still basically an invalid who needs to keep his eyes on the road and his hands upon the handrails. Let it roll, baby, roll. Until about 8:30, or whenever I'm ready to go to bed. Quality of life, that's what I'm all about! May it improve a bit during my vacation from treatment.
