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...
4/11/12
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...
3/25/12
3/20/12
Scheduling
I'm all about the scheduling right now. When do I do what, when do I take what, when will we know what... things keep changing, things get put off or pulled forward, things get added and subtracted, and I have to keep track of it all pretty darned closely.
One new thing added is steroids, after my nice 2.5 month vacation from the rotten things. So back to the bloating and the multiple chins and blood sugar problems (again!)... but on the other hand, the headaches and nausea are considerably better, the dizziness is less, and I'm able to eat again. And even better, I don't seem to want to slip off into Nap Time on a constant basis. It's all a trade-off...
As for the brain mets: my consultation with the radiologist at the UofMN is next Wednesday, and then the radiation treatment (probably Gamma Knife) will start very early on April 4. It's a one-time treatment, but fairly complicated, so it will take a while. Theoretically I will go home either the same day or after only one overnight, assuming everything goes as planned.
Pretty amazing when you think about it. Just a few years ago treatment for tumors deep in the cerebellum would have been very risky and largely unsuccessful, but stereotactic radiation procedures have advanced a lot in a short period of time. My surgeon is one of the most experienced in the country for this sort of procedure, so I'm in good hands and can hope for as good a result as possible under the circumstances.
I don't have all the information yet, and of course every patient is different and outcomes cannot be predicted very accurately, but my understanding is that it will probably take another month or so before the full effect of the radiation will be known - I imagine I'll have to have another MRI at that point.
So that's all the information I can give at the moment. The only other bit of news to report is that I will be continuing with the treatment of Afinitor and Exemestane throughout April. I won't have the PET/CT scan until around the same time as the MRI, but my funny old tumor marker test showed that the trend seems to be going in the right direction, so Dr. Bouncy is hopeful that the treatment is working fairly well - at least on some of the tumors, if not all (the very painful hip/pelvic tumor still seems to be growing, as does the one on my spine, but the ones in my ribs seem less painful).
Tumor markers are a very rough 'guesstimate' sort of thing - they don't tell you which tumors are doing what, how many tumors there are or where, and sometimes they just plain don't reflect reality in any way. They are simply an occasionally useful indicator of how much tumor activity there may or may not be at a given time. In my case there was a huge flareup in my tumor marker test at the end of December, at the same time that my scans indicated that there was a huge progression (growth in size, number, and/or activity levels of tumors). In my case the tumor markers went from 11.x in October to 85.x in December, and now it's at 57.x
Now, I had lots of big ol' tumors in Oct. when it was at a mere 11, so 57 isn't anything near a miracle. And those brain tumors cropped up in the meantime. So you can see that it's a very rough indicator, indeed. Still, the downward trend in the past couple months is a small ray of light, and we'll take what we can get.
I'll keep reporting as I can, and if the time comes that I can't, I'll try to have my mom or darling man sub for me a bit. Wish me luck!
One new thing added is steroids, after my nice 2.5 month vacation from the rotten things. So back to the bloating and the multiple chins and blood sugar problems (again!)... but on the other hand, the headaches and nausea are considerably better, the dizziness is less, and I'm able to eat again. And even better, I don't seem to want to slip off into Nap Time on a constant basis. It's all a trade-off...
As for the brain mets: my consultation with the radiologist at the UofMN is next Wednesday, and then the radiation treatment (probably Gamma Knife) will start very early on April 4. It's a one-time treatment, but fairly complicated, so it will take a while. Theoretically I will go home either the same day or after only one overnight, assuming everything goes as planned.
Pretty amazing when you think about it. Just a few years ago treatment for tumors deep in the cerebellum would have been very risky and largely unsuccessful, but stereotactic radiation procedures have advanced a lot in a short period of time. My surgeon is one of the most experienced in the country for this sort of procedure, so I'm in good hands and can hope for as good a result as possible under the circumstances.
I don't have all the information yet, and of course every patient is different and outcomes cannot be predicted very accurately, but my understanding is that it will probably take another month or so before the full effect of the radiation will be known - I imagine I'll have to have another MRI at that point.
So that's all the information I can give at the moment. The only other bit of news to report is that I will be continuing with the treatment of Afinitor and Exemestane throughout April. I won't have the PET/CT scan until around the same time as the MRI, but my funny old tumor marker test showed that the trend seems to be going in the right direction, so Dr. Bouncy is hopeful that the treatment is working fairly well - at least on some of the tumors, if not all (the very painful hip/pelvic tumor still seems to be growing, as does the one on my spine, but the ones in my ribs seem less painful).
Tumor markers are a very rough 'guesstimate' sort of thing - they don't tell you which tumors are doing what, how many tumors there are or where, and sometimes they just plain don't reflect reality in any way. They are simply an occasionally useful indicator of how much tumor activity there may or may not be at a given time. In my case there was a huge flareup in my tumor marker test at the end of December, at the same time that my scans indicated that there was a huge progression (growth in size, number, and/or activity levels of tumors). In my case the tumor markers went from 11.x in October to 85.x in December, and now it's at 57.x
Now, I had lots of big ol' tumors in Oct. when it was at a mere 11, so 57 isn't anything near a miracle. And those brain tumors cropped up in the meantime. So you can see that it's a very rough indicator, indeed. Still, the downward trend in the past couple months is a small ray of light, and we'll take what we can get.
I'll keep reporting as I can, and if the time comes that I can't, I'll try to have my mom or darling man sub for me a bit. Wish me 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
Retreat, Again
You may remember other posts I have written about the wonderful retreats made available to breast cancer patients and survivors by Breast Cancer Recovery.
If you don't, you can read them here and here.
These retreats are a fantastic opportunity to connect with other women who are experiencing similar hopes, dreams, fears and treatments, as well as providing physical and emotional healing and pampering.
I just got a reminder from BCR that there are still spaces available for their three remaining retreats for women with metastatic breast cancer. I cannot say enough about these wonderful women, and the folks at the Sundara Spa that provide a fabulously restful and pampering environment for the participants. Please send on this information to any gal you know who might benefit:
If you don't, you can read them here and here.
These retreats are a fantastic opportunity to connect with other women who are experiencing similar hopes, dreams, fears and treatments, as well as providing physical and emotional healing and pampering.
I just got a reminder from BCR that there are still spaces available for their three remaining retreats for women with metastatic breast cancer. I cannot say enough about these wonderful women, and the folks at the Sundara Spa that provide a fabulously restful and pampering environment for the participants. Please send on this information to any gal you know who might benefit:
Breast Cancer Recovery is pleased to announce that there are spaces still available in the three remaining 2012 Infinite Boundaries Retreats for women with metastatic breast cancer. The retreats will be held at Sundara Inn, located in Wisconsin Dells. Please share this with women who might be interested.
SPACE IS LIMITED! REGISTER SOON!
FEE IS $300. SCHOLARSHIPS ARE AVAILABLE!
DATES:
Monday, May 14 – Thursday, May 17
Monday, September 24 – Thursday, September 27
Monday, November 5 – Thursday, November 8
The fee for the four-day, three-night retreat is $300 due to the many generous donors who help to underwrite a large portion of retreat expenses. The retreat fee includes all meals, lodging, program materials and activities. Breast Cancer Recovery offers scholarship opportunities which help to make Infinite Boundaries retreats affordable to more women.
Additional information about this and other Infinite Boundaries retreats can be found at www.bcrecovery.org, by calling 888-821-1140 or by sending an email to info@bcrecovery.org.
Register by phone: 888-821-1140
Register online: www.bcrecovery.org
Questions? info@bcrecovery.org
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?
3/11/12
Vote Now, Vote Often
METAvivor needs your vote. Heck, it needs your votes, since you are allowed to vote once every day until March 15th.
METAvivor is an organization that is dedicated to funding research on metastatic breast cancer. Currently most breast cancer funding goes towards 'awareness education', while less than 3% goes towards metastatic disease, which kills 30% of all people who are diagnosed with breast cancer (that means that 30% of the women currently celebrating their 'survivorship' will go on to develop metastatic breast cancer, which currently is both incurable and terminal).
METAvivor has applied for the Pink Well video competition. If it receives the most votes, it will apply 100% of the $50,000 prize towards grants for metastatic breast cancer research.
My cancer has advanced too far to be helped by this research - but your support could help us find a cure in time to save other women that you know and love. Your mom, your daughter, your niece, your sister, your friend, your neighbor. The 30% of the 'survivors' who participated in your last local breast cancer fundraiser who will go on to develop metastatic disease.
Vote today. Vote tomorrow. Vote every day through the 15th. And then, if you can, donate to organizations like METAvivor. Awareness is good, but a cure would be better...
METAvivor is an organization that is dedicated to funding research on metastatic breast cancer. Currently most breast cancer funding goes towards 'awareness education', while less than 3% goes towards metastatic disease, which kills 30% of all people who are diagnosed with breast cancer (that means that 30% of the women currently celebrating their 'survivorship' will go on to develop metastatic breast cancer, which currently is both incurable and terminal).
METAvivor has applied for the Pink Well video competition. If it receives the most votes, it will apply 100% of the $50,000 prize towards grants for metastatic breast cancer research.
My cancer has advanced too far to be helped by this research - but your support could help us find a cure in time to save other women that you know and love. Your mom, your daughter, your niece, your sister, your friend, your neighbor. The 30% of the 'survivors' who participated in your last local breast cancer fundraiser who will go on to develop metastatic disease.
A Cure In Time For Her, Perhaps?
Vote today. Vote tomorrow. Vote every day through the 15th. And then, if you can, donate to organizations like METAvivor. Awareness is good, but a cure would be better...
3/6/12
In The End, This Is What It's All About
We make a big deal - in both positive and extremely negative ways - about the details of our various religions and spiritual beliefs. I never could understand the fuss.
To me, to fight about the differences between my way of communing with the universe and your way of celebrating God's existence is like fighting about the differences between the brass and the string sections of the orchestra. We are each of us one part of the great celestial harmony - each voice simultaneously unique and part of a greater whole, making of the entire something unimaginably, achingly beautiful. The notes change, the harmonies break apart and regroup, but nothing is wasted, nothing disappears forever, nothing ends. The music goes on.
I believe that science reflects, rather than diminishes, this spiritual understanding. Superstring theory, astronomy, biology, physics - all, in one way or another, come down to an understanding of the interconnectedness of everything. All of creation resonates harmoniously; religion, art, music, dance, philosophy, literature - they are all born of our need to express this spiritual and tangible truth.
I find it a great comfort to think of this. I hope that you do, too.
My thanks to Gypsy Maria Lorimer for pointing out this video. As always, it's just one way of looking at one facet of a greater whole - but it's a beautiful facet to contemplate!
To me, to fight about the differences between my way of communing with the universe and your way of celebrating God's existence is like fighting about the differences between the brass and the string sections of the orchestra. We are each of us one part of the great celestial harmony - each voice simultaneously unique and part of a greater whole, making of the entire something unimaginably, achingly beautiful. The notes change, the harmonies break apart and regroup, but nothing is wasted, nothing disappears forever, nothing ends. The music goes on.
I believe that science reflects, rather than diminishes, this spiritual understanding. Superstring theory, astronomy, biology, physics - all, in one way or another, come down to an understanding of the interconnectedness of everything. All of creation resonates harmoniously; religion, art, music, dance, philosophy, literature - they are all born of our need to express this spiritual and tangible truth.
I find it a great comfort to think of this. I hope that you do, too.
My thanks to Gypsy Maria Lorimer for pointing out this video. As always, it's just one way of looking at one facet of a greater whole - but it's a beautiful facet to contemplate!
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