Hmm... Blogger is looking very different, and now is not a good time for things to get all different on me. Why do things get more complicated right when the brain is getting beyond figuring out new things?
Frankly, the brain is getting beyond figuring out old things.
Here is what has been happening:
The smallest of the brain tumors turned out to be further down and back in my brain than they thought, and so they were not able to treat it with the Gamma Knife treatment along with the other two tumors. At the time, they spoke of trying other treatments in May... either a different targeted treatment or whole brain radiation. Or of course the choice of letting the tumor grow untreated - a quick and unpleasant death to follow. The plan was to do another brain scan mid-May, which might give us a better idea of what options would be available.
In the meantime, we found out that the steroids that keep brain swelling down also interfere with the effectiveness of the chemo treatment that I am taking. A PET/CT scan last week showed a mixed pattern of tumor growth and regression. I also have been suffering from a great deal of pain in the foot and hip, some of which is due to side effects from the chemo, and some of which is due to lymphedema in the hip and leg and foot (which is worsened by the steroids). Unfortunately because of the huge tumor in my hip, it turns out that I have very few options in treating the lymphedema, which is interfering with both comfort and mobility. So we decided to minimize the steroid as much as possible, and to skip doses of chemo on occasion in order to give my foot and hip a bit of recovery time, while still hopefully getting some slowing of tumor growth from a lower dose of the chemo.
Unfortunately, this past Saturday I woke up with severe dizziness, nausea, vertigo, vomiting - and when I tried to get to the bathroom, I fell and found that I could not walk.
Subsequently, I have been off the chemo for a week and on three days of intensive steroid treatment. Things have improved somewhat, but I am now using a walker and still suffering from dizziness and nausea, and the combination of chemo and steroid I am now on probably pretty much cancel each other out in terms of effectiveness. We are definitely in Experimentation Territory at this point. Dr. Bouncy and I are neither of us happy with the situation, but there are no clear roadmaps as to what would be the best tactics to use, so we are just guessing and compromising and hoping for the best.
In the meantime, we are still not sure what caused the sudden problems described above. It could be a reaction of brain tissue to the Gamma Knife treatment. It could be quick growth of the untreated tumor. It could be a combination of the two. Or perhaps something else.
The neurologic radiation specialist has (in consultation with another radiologist) decided that our best bet is to treat the smallest tumor via Gamma Knife on the 9th of May. They will do a scan just before the treatment, which should tell us if part of the trouble is tissue swelling and/or bleeding from the prior treatment, but they feel that the most important thing right now is to try to keep that little tumor from growing any more than is necessary, and that Gamma Knife is our best bet for doing that.
So that is the story at the moment. Frankly, I feel that so much of this is basically a matter of flying blind and guesswork. There are so many unknowns, and so many decisions to be made on a dearth of information.
At the same time, we are trying to make a lot of decisions about my living situation and treatments in the near future, also largely to be made on a dearth of information - my quality of life, side effects, treatment effectiveness, insurance and financial situations, all seem to change rapidly and without warning. None of these decisions are made easier by my brain function and emotional situation being messed up by the various meds and tumors and who knows what else...
So. I apologize for the lack of focus and clarity in this post. I hope that things will get a little better with a lowering of steroid dosage, although I cannot make any promises on that front. I will try to update you as things go along, assuming that I am able to understand anything that is going on, myself!
4/26/12
4/11/12
Pink Ribbons, Inc.
The movie "Pink Ribbons, Inc." may be coming to a theater near you - and if it is, you should go see it. An excellent description of the movie, the reasons to see it, and a link to a list of places it will be 'coming soon' is available at the wonderful blog "ihatebreastcancer". Check out the info, and while you are at it, read a few posts while you are there, you'll be glad you did!
Holding Pattern
I'm having a lot of trouble with symptom management - in part because we aren't sure what symptoms are due to the cancer in my body, what are due to side effects of medications, and what are due to the brain tumors. This makes treating the symptoms somewhat difficult, because different meds use different pathways to treat various issues.
For instance, one sort of steroid works well for brain mets, because it treats cerebral swelling well, while another might do better for chemo-caused inflammation and symptoms. Unfortunately the steroid I am taking - which treats cerebral swelling - I recently found out decreases the effectiveness of the chemo treatment I am taking. Since we suspect that at least some of the very worst of the symptoms are caused by the chemo drugs, having to double the dosage in order to get the same effectiveness one would expect from the dosage that is already causing problems... well as you can imagine, it's not optimal.
Another steroid might not have that problem of lowering effectiveness, but would not treat any symptoms that might come from the tumors in my brain (perhaps most especially the one that could not be treated and thus not slowed down, whose low position near the brain stem makes brain swelling a major concern).
As you can imagine, this is causing concern and consternation to all concerned. I have an appt. with my palliative care specialist tomorrow, and she has consulted with the neurologist and my oncologist, so hopefully we will figure out some course of action... but she tells me that they may not be able to alleviate my symptoms to anyone's satisfaction, and it may all just be an exercise in trying to balance the horribleness in a way that I can sort of grit my teeth and bear it at least part of the time, rather than getting me to a place where I am functional or comfortable. In other words, I may get to choose which symptoms are most awful (do you want excruciating pain and manageable nausea, or manageable pain but lots of dizziness and vomiting?), but I don't get to choose not to feel awful.
In the meantime, my condition is putting us under a lot of pressure to make decisions about end-of-life care that are difficult to make with the relative dearth of information we have - we don't have a timeline that lets us know what and when my various needs will be, and this causes a lot of practical planning problems. I am under the pressure to get a lot of things done, but I'm not in a condition that lends itself to doing things that require either physical or mental exercise.
All of this is what takes up my time, most of which is spent in bed. Well, that and watching television, which is the only recreational activity I'm capable of at this point.
And that is why I haven't had a lot to say in the last week or two. I'll let you know if I catch a break for a while...
For instance, one sort of steroid works well for brain mets, because it treats cerebral swelling well, while another might do better for chemo-caused inflammation and symptoms. Unfortunately the steroid I am taking - which treats cerebral swelling - I recently found out decreases the effectiveness of the chemo treatment I am taking. Since we suspect that at least some of the very worst of the symptoms are caused by the chemo drugs, having to double the dosage in order to get the same effectiveness one would expect from the dosage that is already causing problems... well as you can imagine, it's not optimal.
Another steroid might not have that problem of lowering effectiveness, but would not treat any symptoms that might come from the tumors in my brain (perhaps most especially the one that could not be treated and thus not slowed down, whose low position near the brain stem makes brain swelling a major concern).
As you can imagine, this is causing concern and consternation to all concerned. I have an appt. with my palliative care specialist tomorrow, and she has consulted with the neurologist and my oncologist, so hopefully we will figure out some course of action... but she tells me that they may not be able to alleviate my symptoms to anyone's satisfaction, and it may all just be an exercise in trying to balance the horribleness in a way that I can sort of grit my teeth and bear it at least part of the time, rather than getting me to a place where I am functional or comfortable. In other words, I may get to choose which symptoms are most awful (do you want excruciating pain and manageable nausea, or manageable pain but lots of dizziness and vomiting?), but I don't get to choose not to feel awful.
In the meantime, my condition is putting us under a lot of pressure to make decisions about end-of-life care that are difficult to make with the relative dearth of information we have - we don't have a timeline that lets us know what and when my various needs will be, and this causes a lot of practical planning problems. I am under the pressure to get a lot of things done, but I'm not in a condition that lends itself to doing things that require either physical or mental exercise.
All of this is what takes up my time, most of which is spent in bed. Well, that and watching television, which is the only recreational activity I'm capable of at this point.
And that is why I haven't had a lot to say in the last week or two. I'll let you know if I catch a break for a while...
4/4/12
Reporting In... And Out, Apparently
It's evening, and I'm awake enough to type, so here's my report (so far):
The halo thing was more unpleasant than hoped for. This is partially because I have a bad reaction to one of the local anesthetics used, so they had to do without... and evidently it's a significant omission in terms of pain control. The first attempt to screw the thing to my head was agonizing, they were literally crushing whole areas of bone that weren't even attached to the areas being screwed. Eventually they believed that I was not just being a whining crybaby and took the thing off and started over again, after shooting me up with a lot more novocaine. The second attempt was still painful, but within bearable levels, so that one stayed.
They got me in to treatment a lot earlier than they thought they would, which is good. The reason they did this is because they couldn't get at one of the tumors, which is bad. Among other things, they were afraid that if they did the procedure now, it would flood the areas between it and the other two tumors with too much radiation, and damage too much brain tissue. They hope that giving the rest of the brain a few weeks to recover might minimize the more serious potential side effects. The other choice would be whole-brain radiation, but I have to say that I'd rather avoid that if at all possible. I will have to go in for another scan in six weeks, and if the tumor has grown enough that they think they can get at it, they will do so with a different machine and different process, at a different hospital. I think the other process is less exact, probably more risks... but this is evidently a very badly placed tumor, very low and deep in the brain, so it's not giving us as many options.
The tumors they did treat, the two larger and higher ones, were somewhat complicated, as well. But they feel they got them, and no other tumors showed up on the scans, which is good. The next concern is the next 10 days or so, where the short term side effects tend to show up from brain swelling and bleeding, nerve damage, tumor swelling and toxin release, etc. Pretty much a 'wait and see' deal.
After that the concerns are long-term side effects, which are largely the same as the short term ones but can show up unexpectedly months or even years later (not that I have to worry about that last part). Oh, and in a decade or two it can cause you to get other cancers in your brain - but of course when the nurse said that, I just laughed...
Just before treatment they gave me a largish dose of steroids to help keep the brain from swelling during/after the radiation. There was some concern when I threw up immediately after taking the steroids... but it was soon enough that they were a bit reassured that they didn't see any actual pills, so we are hoping that will turn out okay. The treatment itself was weird feeling and uncomfortable in terms of all the manipulation of the halo and head and shoulders, but once you are settled in it's pretty quiet and easy. They put a wet washcloth over my forehead and eyes to help with the nausea, which also meant that I didn't see the halo around my head and face - probably more restful that way. They played my cd (Thanks, James Taylor, you are very relaxing) and by the time it was over I was ready for the second tumor to be treated, and by the time the cd played again, I was ready to have the halo taken off.
That part wasn't more than uncomfortable, not too bad. Then they put on a bandage that keeps your skull under pressure for a while - it makes me look like a wounded soldier from Valley Forge, I wanted to know where my fife and drum were hidden - this is to keep your skull from depressurizing too quickly and causing rebound brain swelling, etc. We'll take this off tomorrow morning, treat the holes where the screws went into my skull with a bit of antibiotic lotion, and try to fend off infection for the next week or so, until the holes close up.
I went home to bed as soon as I got home, with migraine and pain in the pressure bandage around my head (normal, I guess), and depression from the Ativan. Slept for most of the afternoon, although Scott says that I did talk a bit in an Out Of It sort of way. Currently have a moderate headache and nausea, but not anything too desperately awful... I'm typing this up and then we're going to watch something light and stupid and then back to bed.
As Scarlett says, "Tomorrow is another day..."
The halo thing was more unpleasant than hoped for. This is partially because I have a bad reaction to one of the local anesthetics used, so they had to do without... and evidently it's a significant omission in terms of pain control. The first attempt to screw the thing to my head was agonizing, they were literally crushing whole areas of bone that weren't even attached to the areas being screwed. Eventually they believed that I was not just being a whining crybaby and took the thing off and started over again, after shooting me up with a lot more novocaine. The second attempt was still painful, but within bearable levels, so that one stayed.
They got me in to treatment a lot earlier than they thought they would, which is good. The reason they did this is because they couldn't get at one of the tumors, which is bad. Among other things, they were afraid that if they did the procedure now, it would flood the areas between it and the other two tumors with too much radiation, and damage too much brain tissue. They hope that giving the rest of the brain a few weeks to recover might minimize the more serious potential side effects. The other choice would be whole-brain radiation, but I have to say that I'd rather avoid that if at all possible. I will have to go in for another scan in six weeks, and if the tumor has grown enough that they think they can get at it, they will do so with a different machine and different process, at a different hospital. I think the other process is less exact, probably more risks... but this is evidently a very badly placed tumor, very low and deep in the brain, so it's not giving us as many options.
The tumors they did treat, the two larger and higher ones, were somewhat complicated, as well. But they feel they got them, and no other tumors showed up on the scans, which is good. The next concern is the next 10 days or so, where the short term side effects tend to show up from brain swelling and bleeding, nerve damage, tumor swelling and toxin release, etc. Pretty much a 'wait and see' deal.
After that the concerns are long-term side effects, which are largely the same as the short term ones but can show up unexpectedly months or even years later (not that I have to worry about that last part). Oh, and in a decade or two it can cause you to get other cancers in your brain - but of course when the nurse said that, I just laughed...
Just before treatment they gave me a largish dose of steroids to help keep the brain from swelling during/after the radiation. There was some concern when I threw up immediately after taking the steroids... but it was soon enough that they were a bit reassured that they didn't see any actual pills, so we are hoping that will turn out okay. The treatment itself was weird feeling and uncomfortable in terms of all the manipulation of the halo and head and shoulders, but once you are settled in it's pretty quiet and easy. They put a wet washcloth over my forehead and eyes to help with the nausea, which also meant that I didn't see the halo around my head and face - probably more restful that way. They played my cd (Thanks, James Taylor, you are very relaxing) and by the time it was over I was ready for the second tumor to be treated, and by the time the cd played again, I was ready to have the halo taken off.
That part wasn't more than uncomfortable, not too bad. Then they put on a bandage that keeps your skull under pressure for a while - it makes me look like a wounded soldier from Valley Forge, I wanted to know where my fife and drum were hidden - this is to keep your skull from depressurizing too quickly and causing rebound brain swelling, etc. We'll take this off tomorrow morning, treat the holes where the screws went into my skull with a bit of antibiotic lotion, and try to fend off infection for the next week or so, until the holes close up.
I went home to bed as soon as I got home, with migraine and pain in the pressure bandage around my head (normal, I guess), and depression from the Ativan. Slept for most of the afternoon, although Scott says that I did talk a bit in an Out Of It sort of way. Currently have a moderate headache and nausea, but not anything too desperately awful... I'm typing this up and then we're going to watch something light and stupid and then back to bed.
As Scarlett says, "Tomorrow is another day..."
It's Been A Hard Day's Night
... or something like that. It's been physically and mentally a difficult couple weeks. The news from various doctors has not been encouraging - pretty much a menu of choices that all involve very unpleasant results and then more unpleasant choices.
I've clearly reached the point in terminal cancer that is pretty much all the terminal and not much of the other stuff. And I can't say that I feel ready for it. I don't feel ready for the process, I don't feel ready for the ending. None of this was voluntary, and I'm feeling a bit resentful of being Drafted without my permission.
But here I am, no real choice about the matter, just a sort of vague hope of dragging things out a little bit longer. And today is a big day in the 'trying to drag things out' process - the Gamma Knife procedure, whose only offered benefit is the possible potential to slow the rapid march of the brain tumors down a bit... an attempt, as the neurologic surgeon puts it, 'to bring the battle back to the body'. A battle that my body clearly is losing relatively quickly at this point, but that might buy me a few extra weeks or months with my loved ones.
So.
Wish me luck with the battle - that the procedure itself won't be as unpleasant as one fears in the wee small hours of the night, that the side effects will be minimal, that it will work and buy me that bit of extra time, and maybe a smidge more functionality and less pain for a while. Every little bit counts at this point.
I need the luck...
I've clearly reached the point in terminal cancer that is pretty much all the terminal and not much of the other stuff. And I can't say that I feel ready for it. I don't feel ready for the process, I don't feel ready for the ending. None of this was voluntary, and I'm feeling a bit resentful of being Drafted without my permission.
But here I am, no real choice about the matter, just a sort of vague hope of dragging things out a little bit longer. And today is a big day in the 'trying to drag things out' process - the Gamma Knife procedure, whose only offered benefit is the possible potential to slow the rapid march of the brain tumors down a bit... an attempt, as the neurologic surgeon puts it, 'to bring the battle back to the body'. A battle that my body clearly is losing relatively quickly at this point, but that might buy me a few extra weeks or months with my loved ones.
So.
Wish me luck with the battle - that the procedure itself won't be as unpleasant as one fears in the wee small hours of the night, that the side effects will be minimal, that it will work and buy me that bit of extra time, and maybe a smidge more functionality and less pain for a while. Every little bit counts at this point.
I need the luck...
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