Why the Wait?
I received a comment on my last post about why it is that I have to wait to find out anything...
We were baffled by this in the beginning, too... I'll do my best to explain why it's really not as big a deal as it seems, so that everyone (including my adorable anonymous comment poster) will understand (at least as well as I understand and can remember with my cloudy brains).
First off, Dr. Fleming DID peep my cervix during each of my five brachytherapy sessions. And every time he said things were looking better and better. But I guess the deal is, the tumor is still there. And that is NORMAL. It's there, but it is in the process of dying. The brachy nurse practitioner told Ryan that even when they look at it at my follow-up with them in February, it will still be there, just looking all gross and necrotic and dying and stuff. The radiation, both the external and the brachy, continue to work for weeks after the treatments are over. The gift that keeps on giving, they keep telling me. And THAT is the reason they cannot re-scan me just yet. There is still radiation doing it's thing in my body at the moment, and there will be for a while yet. And since the PET scan works by sending radioactive sugar after the cancer cells to get them to show up for the fancy machinery, the radiation that's still in there could show false positives on the scan. So they have to wait.
What I DON'T know yet is how LONG we have to wait. I think at some point someone told us 4 weeks, but I honestly cannot remember. We should find out the scheduling of all of that business when we meet with Dr. Kebria this coming Thursday afternoon. At least I hope we do. Getting a timeline for the remainder of the tests and such is one of my main goals for that visit. (Another is finding out why I have all of these painful hard lumps in the veins of my hands and arms - assuming it's some sort of post-chemo side effect, but definitely want to make sure!)
So hopefully that clears that up. Believe me, we are not just waiting around for no reason. I wanna know more than ANYTHING if it all worked. If I am going to be ok. If I am really and truly DONE being poked and prodded and stuck and violated. Or if I need surgery. Or more treatments. Or what...
If the doctor can give me a good timeline next week, I will be happy.
Xxo, Phoebe
We were baffled by this in the beginning, too... I'll do my best to explain why it's really not as big a deal as it seems, so that everyone (including my adorable anonymous comment poster) will understand (at least as well as I understand and can remember with my cloudy brains).
First off, Dr. Fleming DID peep my cervix during each of my five brachytherapy sessions. And every time he said things were looking better and better. But I guess the deal is, the tumor is still there. And that is NORMAL. It's there, but it is in the process of dying. The brachy nurse practitioner told Ryan that even when they look at it at my follow-up with them in February, it will still be there, just looking all gross and necrotic and dying and stuff. The radiation, both the external and the brachy, continue to work for weeks after the treatments are over. The gift that keeps on giving, they keep telling me. And THAT is the reason they cannot re-scan me just yet. There is still radiation doing it's thing in my body at the moment, and there will be for a while yet. And since the PET scan works by sending radioactive sugar after the cancer cells to get them to show up for the fancy machinery, the radiation that's still in there could show false positives on the scan. So they have to wait.
What I DON'T know yet is how LONG we have to wait. I think at some point someone told us 4 weeks, but I honestly cannot remember. We should find out the scheduling of all of that business when we meet with Dr. Kebria this coming Thursday afternoon. At least I hope we do. Getting a timeline for the remainder of the tests and such is one of my main goals for that visit. (Another is finding out why I have all of these painful hard lumps in the veins of my hands and arms - assuming it's some sort of post-chemo side effect, but definitely want to make sure!)
So hopefully that clears that up. Believe me, we are not just waiting around for no reason. I wanna know more than ANYTHING if it all worked. If I am going to be ok. If I am really and truly DONE being poked and prodded and stuck and violated. Or if I need surgery. Or more treatments. Or what...
If the doctor can give me a good timeline next week, I will be happy.
Xxo, Phoebe
Comments
Hi, Phoebe. You are correct. Chemotherapy drugs, as you know, are nasty. Some are vesicants and produce a side effect called "vesication." This is basically a blister, or other chemical trauma to the lining of your veins. These lumps should go away in time. Many drugs produce this problem to some degree. But please put it on your list of questions. I would recommend heat for the discomfort, but without knowing what specific chemotherapeutic agents you received, it is probably better to ask your MD before doing anything.
You are right on in your request for a timeline and continued treatment plan. This is basic and essential. You are entitled to knowing this, so don't take any bullshit from anyone. If "they" don't know or will not answer your questions, then please ask why, and/or whether anyone else can answer your questions, and what variables make the questions unanswerable.
Anyway, hope this helps. Your fierceness continues to amaze me!
Gale