Today we had a visit with someone we've never met before, a nurse practitioner who was theoretically standing in for Dr. Bouncy. Unfortunately she left my mother in tears and a degree of maternal distress that was very difficult to see. I have to admit that she also left me in a degree of internal distress that was somewhat difficult to experience, as well...
For one thing, she made it clear that Dr. B either misinformed us or had changed his mind without consulting us in any way; the option for clearing my meningeal lining of cancer cells has been vetoed, will-we or nil-we, as has any other treatment options than kicking us unceremoniously out of the hospital as soon as I no longer have a condition that they are legally required to treat. In other words, as soon as my current course of radiation is through on Friday, we're out of here unless I literally cannot move - if, for instance, I have a heart attack or my organs fail or I am completely incontinent due to radiation damage to my intestines (not an entirely unlikely scenario).
This, in spite of the fact that it will be a holiday weekend, with the attending short staffs and unavailable rooms that usually accompany said weekends. That is, according to the Nurse Practitioner of Doom, our problem and not theirs. We should have had our ducks in a row and our papers all in order, in spite of the sudden and unexpected onset of my crisis. After all, we've had at least a week to adjust...
Speaking of adjustments. Today's radiation treatment, intended to be a two-parter with one treatment in the morning and one in the afternoon, turned out to be a single. One of the radiation machines went on the fritz. Again. Which was possibly a blessing, as the a.m. treatment was once again very painful, and unfortunately the condition of my leg and foot and back has degraded since then. I am having intestinal issues already, my leg and hip and foot are more swollen and painful than they have been in a long time, and we are now slated for two treatments tomorrow, instead of today. My team is asking me to make decisions about pain meds, but I have no idea what was working on Tuesday that is so clearly not working today.
So. Tomorrow is another day. Let's hope maybe somewhat better - good news on the housing front would be nice, for instance, and less pain and swelling in the leg and hip and back would be better still.
We'll see......
Showing posts with label Whinging. Show all posts
Showing posts with label Whinging. Show all posts
5/19/12
Trying To Breathe
Things are looking no better at the moment, so we're trying to find some balance between panic and foolish denial.
Some combination of the cancer and the drugs are certainly not helping. There are a ton of things that need to be done - gathering of information, organizing, prioritizing, putting information together in a way that makes sense for my husband, etc. Not to mention the need to gather my thoughts together enough to write something meaningful down for my various loved ones, so that they have some little bit of me when I am gone.
Unfortunately, just the gathering of info and organizing has become impossibly challenging. I spend hours staring at the same pile of papers, moving them around, trying to force them to make sense enough to deal with them... it's very frustrating, because I know that what took me five hours yesterday (and I still haven't really dealt with them, just sort of tried to figure out what I would do with them later on) would have taken me five minutes last year.
The stresses of having to deal with my needs and his own feelings has left my husband hardly more functional than myself. His body moves like my focus - just vaguely wandering from one place to another, looking at whatever catches his attention and then putting it down wherever he loses interest. The result being that after hours of fretful activity, either very little gets done or things actually end up worse.
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Well, that was written a few days ago, and then I got distracted (are you surprised?), and then we lost internet ability until now.
We lost it because by necessity I moved to my parents' house, and in order to make room for me they had to unplug their office stuff, including the router. But today a very nice man who belongs to this Club of ours that nobody wants to be in (people who either are dying of cancer or who have lost a beloved family member to cancer) came in and set everything up for us. So I'll get a couple more posts out to you, I hope. But probably not many.
In a few short days I've lost the use of one foot completely, it's a useless thing that flops or folds over agonizingly when I try to drag it along with me. I am halfway on the way to losing the other, and feel the beginnings of loss in the hands. First things go numb, then painful pins and needles along with numb - and at that point they are gone, useless. Every day I am feeling things slipping away, right as it happens.
I promised I'd be honest, so here goes. That is not the only stuff that is going numb, and losing muscle power. Front and back, the abdominal areas are starting to go bad, too. And the stuff that is connected to the abdominal areas. At the current rate of deterioration, I won't have many days (maybe tomorrow?) before things are going to get very unpleasant, and very difficult.
Well, things are already unpleasant and difficult, but everything is relative. There's unpleasant and difficult. And then there's unbearable.
Some combination of the cancer and the drugs are certainly not helping. There are a ton of things that need to be done - gathering of information, organizing, prioritizing, putting information together in a way that makes sense for my husband, etc. Not to mention the need to gather my thoughts together enough to write something meaningful down for my various loved ones, so that they have some little bit of me when I am gone.
Unfortunately, just the gathering of info and organizing has become impossibly challenging. I spend hours staring at the same pile of papers, moving them around, trying to force them to make sense enough to deal with them... it's very frustrating, because I know that what took me five hours yesterday (and I still haven't really dealt with them, just sort of tried to figure out what I would do with them later on) would have taken me five minutes last year.
The stresses of having to deal with my needs and his own feelings has left my husband hardly more functional than myself. His body moves like my focus - just vaguely wandering from one place to another, looking at whatever catches his attention and then putting it down wherever he loses interest. The result being that after hours of fretful activity, either very little gets done or things actually end up worse.
----------
Well, that was written a few days ago, and then I got distracted (are you surprised?), and then we lost internet ability until now.
We lost it because by necessity I moved to my parents' house, and in order to make room for me they had to unplug their office stuff, including the router. But today a very nice man who belongs to this Club of ours that nobody wants to be in (people who either are dying of cancer or who have lost a beloved family member to cancer) came in and set everything up for us. So I'll get a couple more posts out to you, I hope. But probably not many.
In a few short days I've lost the use of one foot completely, it's a useless thing that flops or folds over agonizingly when I try to drag it along with me. I am halfway on the way to losing the other, and feel the beginnings of loss in the hands. First things go numb, then painful pins and needles along with numb - and at that point they are gone, useless. Every day I am feeling things slipping away, right as it happens.
I promised I'd be honest, so here goes. That is not the only stuff that is going numb, and losing muscle power. Front and back, the abdominal areas are starting to go bad, too. And the stuff that is connected to the abdominal areas. At the current rate of deterioration, I won't have many days (maybe tomorrow?) before things are going to get very unpleasant, and very difficult.
Well, things are already unpleasant and difficult, but everything is relative. There's unpleasant and difficult. And then there's unbearable.
I'm at the tipping point here. Every day I can literally feel my functions slip away. My poor right leg will not hold me up very much longer, I think. A day or two, maybe? If I don't end up at the hospital this weekend, I will probably be going there or to a hospice residence fairly soon after that. I don't know if I'll be lucky enough to go fairly quickly after that, or if (it seems more likely) I will have a very ugly period in which I am somewhere between being in very awful pain and being drugged up to the point of a coma (if they can manage it, given how badly I react to just about every drug ever made).
The cruel thing is that what is so obviously the only humane thing to do for our suffering beloved cats and dogs is a mercy that we will not allow our human loved ones. When our kitty started really suffering, we were able to hold her and pet her and let her know that she was loved, she was able to be comfortable and comforted, and then she just went to sleep... just a few short peaceful seconds, and she was gone. She didn't have to get to a point where she was in terrible pain, she didn't suffer the indignities of losing her basic physical and brain functions. She got to be herself, she got to say goodbye, she got to feel our love.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
But we have no choice. It's the one area where I'm afraid we will never agree with those who feel that their personal religious beliefs should be prescribed into law/government for all. In this case, we have a division of church and state except that for some reason other people's religious beliefs are in charge of my life, and my own feelings and beliefs don't matter one bit. We have fits over whether our kids see Santa wandering down school hallways, but it's okay for other people to decide the manner of my passing from this world into the next... I am forced to suffer terribly, whether it's right or not, whether it's MY life or not. Scott and my parents will have to pay for it, both emotionally and financially, even though none of us want it - hospice care in a facility costs upwards of $9,000 per month AFTER insurance pays their bit. If you are lucky enough to have insurance - or to be eligible for Medicare, which I am not. Unfortunately I am not alone there, and some people don't have insurance or kind relatives to help out - imagine someone in my position, but they are homeless. Not a nice thought... and not a nice thing to experience.
So I am lucky in one way - but still, it's hard to look at my present or my future and feel that way.
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5/18/12
Life and Death
When we drove here, I knew that it was the last time I was going to really feel fresh air on my face, the last time I was going to see the city skyline against the blue sky, the last time I was going to see the purple and white iris exploding with riotous exuberance in their garden plots. I knew it was the last lovely thing I would share with my beloved. It was beautiful, and it was bitter.
This morning I woke up to the sound of birdsong. I lay still for a few minutes, my eyes closed, and for that few minutes I felt... like me. Normal. As though I could get up and take a walk in the morning's tender light. As though I was going to live to see my son and baby granddaughter grow up, and celebrate holidays with my beautiful and loving family, and share romantic getaways with my husband, and make colorful soft textiles with my once-clever hands, and laugh with my friends. It was beautiful, and it was bitter.
4/26/12
Things Are Different...
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!
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!
4/11/12
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...
3/15/12
Not Happy, Not Surprised
The news is Not Good.
I just got off the phone with Dr. Bouncy, just a couple hours after my scan was finished. There are several tumors in my cerebellum. Nothing they can see above that, which is good - it means that there's nothing in the areas that affect my thinking self, who I am. But it is probably the cause of the headaches and nausea and dizziness I've been having. So the next step is radiation.
The largest tumor is 1cm, so Dr. B is hoping that I will be a candidate for stereotactic radiosurgery - possibly either Gammaknife or Cyberknife - rather than having to go through whole brain radiation. Of course, there is the chance that there are microtumors further up that the radiation won't then get... but on the other hand, I think the radiation on my hip actually made the tumor on the left side grow more aggressively, so I'm not too enthusiastic about irradiating my whole brain.
So they're sending me to the UofMN, to talk to a radiologist there and see what my options are. Dr. B says if I decide on radiation, they will probably do it within a week or so. Pretty quick, not a lot of time to prepare...
So yah, I'm scared. This whole thing really sucks, you know? I need a vacation from being me...
:(
3/14/12
Ugh, A Hug...
Dr. Bouncy hugged me yesterday. My long-term readers will probably find this to be a bad sign.
They would be right.
So tomorrow I'm going in for a brain scan. I don't expect the news to be good.
But wish me luck anyway, okay?
They would be right.
So tomorrow I'm going in for a brain scan. I don't expect the news to be good.
But wish me luck anyway, okay?
2/26/12
Drat
Well, I think the latest treatment worked for a few weeks, but it's fairly clear that it was a very short reprieve, indeed. The hip pain has been ratcheting up in the last two weeks, I'm losing appetite and weight fairly rapidly, and today has been very bad health-wise... pain, a feeling of the hip tumor being much more noticeable (larger), and fairly extreme weakness.
The bad symptoms seem to be increasing very quickly, which is scary. I'm grateful to have been able to see my granddaughter born, but I have to admit that I'd like to be around long enough for her to become more of an interacting human being (it's hard to interact with someone who seems determined to stay asleep during our entire time together...), I'd like to get to know her as a person. It seems too much to ask to be here long enough for her to know and remember me, but still...
This last few months have certainly been a roller coaster of ups and downs. I can only hope that this is a temporary dip, and that it is possible that I have a few more ups left in me. I will, of course, keep reporting as we go, but I must say it's been a very discouraging week. Please send all the positive energy, prayers, etc. that you can - I need all the help I can get.
The bad symptoms seem to be increasing very quickly, which is scary. I'm grateful to have been able to see my granddaughter born, but I have to admit that I'd like to be around long enough for her to become more of an interacting human being (it's hard to interact with someone who seems determined to stay asleep during our entire time together...), I'd like to get to know her as a person. It seems too much to ask to be here long enough for her to know and remember me, but still...
This last few months have certainly been a roller coaster of ups and downs. I can only hope that this is a temporary dip, and that it is possible that I have a few more ups left in me. I will, of course, keep reporting as we go, but I must say it's been a very discouraging week. Please send all the positive energy, prayers, etc. that you can - I need all the help I can get.
1/12/12
Newest Info
The coumadin may not be thinning my blood adequately, so I'll be either combining it with another thinner that must be injected into my stomach every day (which means I'll have to do it myself... yeah, that'll be great...) or doing just the injected one.
I'll be in the hospital for at least two more days, maybe more. They'll want to feel comfortable that I'm not throwing more clots and that I'm unlikely to make more.
My bone marrow isn't up to the job of making more cells, so I may need to start having blood infusions. New chemo routine, so we'll see if that helps. This one will be my last 'reasonable' resort - after this, it's more extreme drugs with less record of success, when the more normally successful ones have already failed. So... you know.
**Much of this post is copied from my latest Facebook update - energy is not easy to come by, so I'm conserving where I can. Sorry about that...
12/2/11
Xeloda, Week 4
It's my fourth week on the Xeloda: 3,000mg, which is 3 pills twice a day, on a 7 Days On/7Days Off schedule.
The side effects have not been good for me, which is not surprising. Extreme fatigue, muscle weakness, heartburn, diarrhea, abdominal discomfort, numbness and tingling and a feeling like splinters in my feet and fingers... and worst of all for me, extreme joint pain in my hips and left leg, plus back pain and muscle cramping.
This is bad, but I count pain (even the debilitating sort, which this is - I'm nearly housebound the entire time, and pretty much w-bound for a good amount of time) as less awful than depression, so at the moment I prefer this to the Gemzar, all things being equal. But that equality thing turns out to be a significant issue.
Unfortunately, I just found out that my recent tumor markers showed a fairly significant rise - around 20%. Not entirely a surprise, since the little tumor in my chest wall is showing up again, and it seems to be a pretty reliable reflection of what is going on elsewhere in my body. But definitely not what I wanted to hear.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
That said, he wants to give the Xeloda more time to work. Evidently it can sometimes cause tumor flare before it brings things down, and sometimes it just plain takes a while to kick in. I will be having another marker test and a couple scans (CT/PET/MRI) at the beginning of January, so he wants to see how things look then before making a decision to go back to the dreaded Gemzar (and accompanying steroids, Benadryl, etc).
This is very disheartening. Well, terrifying, really - when your tumor load is heavy, even small increases are significant, and when your cancer is agressive you don't like to give it time to grow with failing treatments. Especially treatments that pretty much take away your quality of life while they are (possibly) doing nothing to stop the Monster.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
Damn.
11/6/11
Waiting...
This past couple weeks has been a waiting game, for the most part - waiting to see if we could get the financing set up for the new chemo. Evidently my insurance company is cheerfully willing to spend tens of thousands of dollars every month to have me get chemo by infusion, but won't spend less than a thousand per month for chemo I have to take orally. So I had to apply to various private charitable orgs in order to get funding. Funding that will work for this year (two months), but which will have to be applied for all over again in January, with no guarantee of approval.
Are we having fun yet?
So as of Friday, the funding is there for November and December, and the chemo (Xeloda) is on its way. I'll start on Monday, theoretically.
I have reservations. I've been having gastro-intestinal issues with the Gemzar, and the Xeloda is even more likely to cause issues there. And they have me on a fairly high dosage, which seems unwise given my history with chemo (and drugs in general). But we'll give it a shot, I guess - there aren't a lot of options available any more, so we've got to try what we can.
Wish me luck...
Are we having fun yet?
So as of Friday, the funding is there for November and December, and the chemo (Xeloda) is on its way. I'll start on Monday, theoretically.
I have reservations. I've been having gastro-intestinal issues with the Gemzar, and the Xeloda is even more likely to cause issues there. And they have me on a fairly high dosage, which seems unwise given my history with chemo (and drugs in general). But we'll give it a shot, I guess - there aren't a lot of options available any more, so we've got to try what we can.
Wish me luck...
8/23/11
Still Here... Sort Of
I know I haven't written lately.
That is because I haven't had anything to say. I haven't had anything to say because I haven't been able to do much, other than lay in bed and be miserable.
The Gemzar is not agreeing with me. This last week I spent nearly entirely in bed with a high fever (up to the mid 103's). There's no evidence of infection, which is the concern with high fevers and chemo. And fever is not unusual with Gemzar, in particular. It's just that usually people get 'flu symptoms' for one or two days. I get them for five or six, and I get them hard.
The question is - is my suffering now doing me enough good that it will buy me functional time later? Or am I just suffering and losing time?
And we don't know the answer to that. I don't know when we will. But I'll let you know as soon as I know.
Until then, I'm hanging in there as best I can. But it's really fatiguing to do anything (like get across the room, or eat, or breathe), so I may not report in as often as I'd like in the meantime.
That said, this is my 'week off', so I'm hoping that later in the week I might feel a little more myself.
A girl can hope, right?
That is because I haven't had anything to say. I haven't had anything to say because I haven't been able to do much, other than lay in bed and be miserable.
The Gemzar is not agreeing with me. This last week I spent nearly entirely in bed with a high fever (up to the mid 103's). There's no evidence of infection, which is the concern with high fevers and chemo. And fever is not unusual with Gemzar, in particular. It's just that usually people get 'flu symptoms' for one or two days. I get them for five or six, and I get them hard.
The question is - is my suffering now doing me enough good that it will buy me functional time later? Or am I just suffering and losing time?
And we don't know the answer to that. I don't know when we will. But I'll let you know as soon as I know.
Until then, I'm hanging in there as best I can. But it's really fatiguing to do anything (like get across the room, or eat, or breathe), so I may not report in as often as I'd like in the meantime.
That said, this is my 'week off', so I'm hoping that later in the week I might feel a little more myself.
A girl can hope, right?
8/7/11
Not My Favorite Chemo
So, one dose in with the Gemzar, and already 5 hours down in the ER. Nasty side effects and a very high fever for two days - after MORE x-rays and a battery of tests, still not sure why. Sent home with a liter of saline in my veins and a prescription for broad-spectrum antibiotics in my pocket.
No, we are NOT having fun yet.
And we're not so sure that I'm going to be able to stick this chemo drug out. Theoretically (and according to the two oncologists I've spoken to on the subject), Gemzar is supposed to be 'relatively mild' as chemo chemicals go... but it hasn't worked out that way for me so far. And a dear friend had a nightmarish experience with it. So. I guess I'll try it for another week (along with the antibiotics, this should be fun), and see where it goes.
But I can't say I'm happy about it.
No, we are NOT having fun yet.
And we're not so sure that I'm going to be able to stick this chemo drug out. Theoretically (and according to the two oncologists I've spoken to on the subject), Gemzar is supposed to be 'relatively mild' as chemo chemicals go... but it hasn't worked out that way for me so far. And a dear friend had a nightmarish experience with it. So. I guess I'll try it for another week (along with the antibiotics, this should be fun), and see where it goes.
But I can't say I'm happy about it.
8/2/11
No News Is Bad News...
So the news isn't good. The Circulating Tumor Cell only found one cell in the sample. One is about what you'd expect to find in a healthy person, if the test was going to be effective for your particular cancer. So no CTC test for me after this - and no help in finding a working treatment quickly enough to be truly useful.
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
7/25/11
Well, That Sucks...
Unfortunately, my cancer seems to be more clever than I am. At least, it seems to be very quick to work around whatever we throw at it.
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
7/3/11
On Hold...
We're having some fairly complicated personal stuff going on at the moment, so I'm taking a bit of time off from all but the most essential survival-oriented functions - which means it might be a few days, or even a week or two, before I post here. Don't give up on me, please. I'll get back to you eventually. In the meantime, please visit some of the lovely blogs and bloggers you will find on the right side of this page. They have plenty to say, and you may find that you make a new friend or two in the process!
6/26/11
Brief
I wrote the second installment of my vacation report here.
We had a lovely time, which is good, because this week was the opposite in just about every way possible... although it mostly has nothing to do with my cancer, so I'll just leave this past week to itself. Hopefully next week will be a little less traumatic.
In the meantime, go finish my vacation with me. I'll be here when you get back.
We had a lovely time, which is good, because this week was the opposite in just about every way possible... although it mostly has nothing to do with my cancer, so I'll just leave this past week to itself. Hopefully next week will be a little less traumatic.
In the meantime, go finish my vacation with me. I'll be here when you get back.
5/4/11
More Good News... Sort Of
The results of the x-ray are in and... um, not much, actually.
No breaks, no new fractures, no impending fractures evident. Could be a little bone spur irritating a nerve bundle, could be a cartilage issue, could be the tumor regressing is causing a bone 'toothache', could be a slight dislocation, could be a pinched nerve, could be just feeling the tumor after a period where the tumor wasn't bothering me.
In other words, who knows? And who knows if it will get better or not? Not us, and not the doctor.
The good news: no need for a rod for the moment. Yay!
The bad news: no particular way to help myself get less pain and more mobility. Just wait to see what happens, grit my teeth and bear it.
Ah, well, just one more of the joys of being Little Rose Cancer Hood!
No breaks, no new fractures, no impending fractures evident. Could be a little bone spur irritating a nerve bundle, could be a cartilage issue, could be the tumor regressing is causing a bone 'toothache', could be a slight dislocation, could be a pinched nerve, could be just feeling the tumor after a period where the tumor wasn't bothering me.
In other words, who knows? And who knows if it will get better or not? Not us, and not the doctor.
The good news: no need for a rod for the moment. Yay!
The bad news: no particular way to help myself get less pain and more mobility. Just wait to see what happens, grit my teeth and bear it.
Ah, well, just one more of the joys of being Little Rose Cancer Hood!
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