Our beautiful, wise and very brave daughter left this world at 1:15 this morning. It was not an easy exit. But it is a beautiful summer solstice morning - a good day to start a new journey. We hope she finds peace and light and we can only be grateful for an end to pain.
I'll write more later -
Eileen's Mum
6/21/12
6/18/12
I am writing this for Eileen as she is no longer able to communicate. She is in hospice now - has been for the last three weeks. She has not been able to post again and the last one was difficult for her - obviously the loss of privacy and dignity is uppermost in her mind right now. However, she is no longer able to use the lift so is confined completely to her bed. She is sleeping much of the time and eats very little. This is a terrible process and her insurance company dragged it's feet in providing the necessary equipment until she was beyond any benefit it could have provided. However, her care givers here are unfailingly kind and try their best to keep her as comfortable as possible.
The hospice Eileen is in is lovely and she has big sunny room with views of the gardens and birds feeding their chicks in a birdhouse outside her window. She has had many visitors coming to give her hugs and to tell her how much she has meant in their lives. She says to send her love and gratitude to all of you who have given so much of your support over these past years - it has done so much to make her last journey bearable. If you leave comments I will try to bring them to her.
And thank you so much from me too for being there for her.
Eileen's Mum
The hospice Eileen is in is lovely and she has big sunny room with views of the gardens and birds feeding their chicks in a birdhouse outside her window. She has had many visitors coming to give her hugs and to tell her how much she has meant in their lives. She says to send her love and gratitude to all of you who have given so much of your support over these past years - it has done so much to make her last journey bearable. If you leave comments I will try to bring them to her.
And thank you so much from me too for being there for her.
Eileen's Mum
Cancer and Dignity
This part is difficult to talk about, but I did promise honesty. If you want to leave yourself with a more dignified or romantic idea of me in your mind, you probably don't want to read this bit.
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I have come very suddenly to a condition that is not only painful, but excruciatingly humiliating - of the two, the humiliating lack of dignity and privacy is much more difficult for me to deal with than the pain. The people here are lovely and kind, but that gives me no relief, no privacy, no dignity. To know that things are only going to get worse instead of better is horrible.
They don't talk about this sort of thing in movies. They don't warn you about this sort of thing in the doctors' offices, either. You expect pain, you sort of know that you are going to end up wearing adult diapers - you know you are going to end up being wiped up a bit on occasion, that you might end up wetting your bed. I cried the first time I stood in the middle of the kitchen, unable to stop the little flood of fluid that poured and spread across the floor.
Cancer does not care about your dignity.
When you have cancer, you end up having to take all sorts of medications, many of which are constipating. So you have to take laxatives and/or stimulants to make sure that you have at least one bowel movement a day, or things get very uncomfortable very quickly. Keeping track of that sort of thing is a pain, but it's better than the alternative...
When you have the kind of cancer that causes paralyzation and numbness, things get worse. You can't feel what is happening, and you don't have the muscle power to get what is down there out on your own. You have to take medicines that soften things as much as possible - both oral meds and the sort that require other people to physically interfere. And then when you sit on the commode, people have to physically interfere again.
There are all sorts of concerns in this situation. First of all, of course this is a very intimate and humiliating sort of process. And you don't get a choice about who performs this service for you - you take who you can get, which for a woman means that sometimes this involves strange men. It is difficult to be brought to a state of infantile dependence on other people for such an intimate process.
Cancer does not care about your privacy.
In order to use the commode, especially if you are paralyzed and cannot get to it on your own, you have to be hoisted by a lift, which has to be managed by at least two people. The process is physically painful, as they end up having to use slings and straps to lift you up and set you down, which presses your limbs all together tightly as you are hoisted through the air, and your clothes get bunched up under you and have to be pulled out from around you in order to get them out of the way when you are on the pot. This pulling about is painful and humiliating in and of itself, but not as bad as the next part, which requires these relative strangers to physically assist in either insertion or abstraction of material - and yes, finally I have reached the point of Too Much Information and I will pull a merciful curtain on that particular issue, relying on your imagination to fill in the details.
But the fact is that at that point you often end up having to wait for minutes or many hours for meds to do their job. There's no nice schedule to let you know when urgency is going to hit. So first of all, you are dependent on your helpers to show up with a lift, which then takes time and a lot of fussing around to get you up and on to the commode, and it might be too late to prevent a mess by that time. And then the process itself, and the cleaning up, might take a great deal of time, might need to be repeated a short time later, etc. Which means that all visitors need to be shoo'd out of the room, and of course they know what is going on, and it's very inconvenient for them and for you. Not to mention humiliating and painful.
Cancer does not care about your pain.
Pain and Kindness
I found this one -
My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone - and unexplained swelling, which has been difficult to resolve - and we had that trouble with the Nurse of Doom.
On the other hand, the support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapist and occupational therapists, the people from the hospice program - have been absolutely fantastic. During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling. They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness.
To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.
If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be. I am told by my nurses that it is also a good place to work.
My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone - and unexplained swelling, which has been difficult to resolve - and we had that trouble with the Nurse of Doom.
On the other hand, the support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapist and occupational therapists, the people from the hospice program - have been absolutely fantastic. During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling. They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness.
To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.
If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be. I am told by my nurses that it is also a good place to work.
5/25/12
Pain and Not
My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone, and unfortunately the standard treatments don't seem to be working for yours truly, and an important treatment has been misplaced and unfortunately now will probably be both important and unavailable in the future - and then there's the unexplained swelling in my leg/foot, which has been difficult to resolve. And of course we had that trouble with the Nurse of Doom.
You'd think that would mean that we'd be unhappy with the hospital, or the hospital staff. But you would be wrong. The support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapists and occupational therapists, the people from the hospice program - have been absolutely fantastic.
During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling. They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness. At all times they have been mindful of my desire to be treated with dignity - not an easy thing with someone who is entirely dependent on others to do not only bathing, but to assist with such intimate issues as cleaning after using the toilet.
To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.
If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be. I am told by my nurses that it is also a good place to work. One of the social workers told me that if she was sick, she would crawl 30 miles over broken glass to get here - I think that probably is what would be considered a positive sign. I'm not big on glass in my knees, but I understand what she meant.
Oops, they are here to get me and whisk me off to the next station on our journey. Will report when able - wish me luck!
5/24/12
What Turns Out Not To Be Next
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......
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......
5/22/12
What's Next
This is the beginning of the end.
I promised I'd be honest on the blog, so I'm getting down to some areas that might count as Too Much Information for some readers. What posts I can manage to write from here on in will sometimes be dealing with physical information that may be more graphic than sensitive people might be comfortable reading. Some posts may be more emotionally difficult to read, for those who have either befriended me over the course of this journey, or those who tend to empathize deeply. I'm not sure how much I'll have the energy or time to write, or whether I'll be able to focus enough to make sense at all times, but I will do my best.
There are some signs that I may have cancer cells in the fluid of my meningeal lining. We will need a lumbar puncture to find out, and then if it is positive for cancer cells and if I want to treat it, they would put chemo in the meningeal lining - theoretically not a lot of side effects, and if there is cancer there, that could be causing some of the muscle weakness and numbness, and the chemo could help maintain what is left of function there. Or I may have subtle tumors in my spinal column that aren't yet big enough to really show up on the scans yet, and given my sensitivity to subtle changes in my body, I could be reacting to them earlier than most people would. More on that in a bit.
What does show are a couple things. One is that the hip tumor has gotten a lot bigger in the last month, and the other tumors are either stable or growing. Another is that there are small but important tumors blocking the nerve sheaths in the bottom of my spinal column - from my lower back to the bottom of the tailbone. Basically L5 is an issue. This is what controls the legs from the knee down in the front, and most of the back of the legs, plus the 'saddle' area - all the area that is covered by a bikini bottom - so it would affect the bowel and urinary continence stuff. All of which has become an issue for me. Doesn't affect the upper stuff that I am also having issues with (thus the 'subtle tumors'/meningeal lining questions), but at the moment these are less of a concern than the continence and being unable to walk/stand.
So. Unfortunately the hip tumors/lymphedema/DVT issues masked the cause of the foot drop on the left side, because once the paralysis has been well established, it cannot be reversed. However, radiation can (if the patient is lucky) reverse the paralysis if caught in the first few days. So they are hoping that radiation to that area of the spine will allow me to keep enough strength on the right side that I will be able to stay continent for at least a while, and be able to get to a commode/bathroom on my own or at least with reasonably minimal assistance.
It is unfortunate that we did not have this information prior to making the decision re Gamma Knife - certainly I feel that some of my fatigue and lack of focus, and perhaps even my balance and weakness issues, comes from the Gamma Knife treatment, and if Dr. Bouncy is correct with my timeline, I don't think the prognosis would be significantly different had I not had it. And even if it had, in terms of that little bottom tumor swelling up and causing massive organ failure, it might have ended up being a quicker and kinder death than that with which I am now faced.
There are, of course, issues with the radiation. One is side effects. With radiation there is always the fatigue factor, which varies from patient to patient. I didn't have too much fatigue with my first round of radiation (to my hips), but I was taking Low Dose Naltrexone at the time, which gave me a lot better pain tolerance and much more energy than I have now. I'm already having a lot of fatigue - and thus also less strength/more weakness - just from the cancer, so adding to this is a big consideration. This would be my second round of radiation, so my guess is that to some degree these things tend to be cumulative, even if there isn't a lot of overlap between the radiation to the hip and radiation to the spine. Since this is the lower spine, there may be some overlap in my case. More complicating factors, in my experience, equal more side effects.
Another consideration is that with the lower spine, there is lower intestine exposed to radiation, and the lower intestine is an area very prone to radiation damage - so there could be a continence issue for a week or so after the 5-course/5-day radiation program they are suggesting. Bedpans cut right into the hip tumor, making them a messy and a painful option... and 'adult diapers' would be lymphadema-inducing and not great for the skin, along with not being the most pleasant and dignified option in the world.
If we did the lumbar puncture/spinal chemo option, it would have to be after the radiation was done, so between them they would take up a couple weeks of treatment. They would, however, count as palliative rather than curative treatments, so they can be done while counting as a hospice patient - which in our case means access to more equipment and services being made available by insurance. Whether I get the lumbar puncture will probably in part be determined by what sort of improvement I do or do not see after the radiation treatments.
All of this is very complicated as far as trade-offs, because according to Dr. B, I've probably got somewhere between 4 and 8 weeks left on me. And of course, although we can't know for sure exactly what is going to happen, some portion of those weeks will be pretty much spent comatose/sleeping, and some portion will be spent actively suffering and dying. Once I'm out of the hospital, most of those weeks will need to be spent in a hospice or nursing facility, due to the more extensive nursing/caretaking needs that this paralysis and weakness are causing.
I would prefer a hospice facility if at all possible, due to them generally having more experience with the palliative and emotional needs of younger patients with cancer-caused symptoms and death - which are often significantly different than the needs of those dying with the symptoms connected to old age.
It would have been helpful to get more info from Dr. Bouncy, which we were told we were going to get this afternoon, but then the world sort of exploded in clouds of doctors and therapists all at the same time, all demanding priority time and none getting to give me anything near a full accounting, and Dr. B somehow never showed up for our consultation... and the first radiation dose is happening early in the morning, since waiting any longer to start treatment would make the damage more likely to be irreversible.
Unfortunately, the radiation machine turns out to be excruciatingly painful. I had about 10 minutes on it today while they targeted it, and ended up crying from the pain of my leg and hip/sitzbone tumor... the table has NO padding, and they have to twist my legs up in what turns out to be a joint-and-tumor torturing position that I am afraid I will not be able to endure for the 30-minute treatment they are promising me each day. I haven't cried for any of the other chemo or radiation treatments, even the chemical burn or the mis-screwed head/faceplate. This was really serious pain. They are going to try to see if they can find some sort of pain killers that will help, but we aren't too sure what will work...
So I have decided to try the radiation treatment, at least for one dose, in hopes that keeping some limited mobility and strength on my right side will improve my quality of life for the following few weeks. Assuming that we can actually do it, given the overlap issue with the previous radiation treatments. Hopefully I will have more time to talk to Dr. B and the radiation specialist between the first and the next doses, and also a better idea of whether the pain factor can be limited a bit better somehow.
Again, these issues are in part due to the swiftness with which this end stage often hits those with metastatic breast cancer. It is axiomatic that it is more common than not that people start hospice care preparations too late to be able to take advantage of what hospice care has to offer - and certainly I would consider myself to count among this population. It is very difficult to make life-and-death decisions and preparations in the midst of a fast-moving crisis, especially one in which there are a number of variables and unknowns, and a fair number of people whose lives will be affected by the outcome.
I will report more tomorrow, I hope. I have dozed off several times during the writing of this post, and it is late, and I have an ordeal to look forward to in not too many hours.
Wish me luck.
5/19/12
Into The Deep
When you get to this part of life, one of the hard things is feeling like you are going to disappear... as though you are slipping down into deep waters with only a few temporary ripples to mark your place. And the fact is that life does go on without us. Kids keep on growing, people keep on working and playing and sorrowing and rejoicing, just as they did before.
Of course that is a good thing. I suppose a few of us might not mind too much if everyone else wandered around beating their breasts and shedding ashcloth everywhere, mourning us forever - it takes all sorts. On the whole, though, I imagine that would make for a pretty dreary neighborhood.
But it's hard not to feel left behind. And it's hard to feel that you might have been rather superfluous, that you didn't accomplish the things you intended, and you didn't leave something of real meaning to mark your passing through the world.
I can't say that I've resolved these fears and feelings for myself, or that I have anything of wisdom to impart. All I can say is that when it all comes down to the end, what we are talking about is trying to find immortality not of the body, but of something more meaningful. And setting the matter of personal spirituality aside for a moment, I can't help but think that the answer lies somewhere between how people remember us and how we touch those people's lives.
It would be easy, perhaps, to glibly say that of course people remember us fondly, and that should satisfy... but I'm not sure it is enough. After all, fondness is fairly easy for many of us, and ease tends to rob things of meaning and value. It's meaning that we're looking for, and that requires something extra. It requires us to invest enough of ourselves in something or someone that we make a difference - that our touch causes something to happen that wouldn't have happened if we had behaved differently, or if we hadn't been there.
The hard thing is that for many - perhaps most - we don't get to see that change of direction, if it happened at all. So unless we are the sort of person who gains fame or notoriety by our actions, we are largely unaware of our degree of influence in the world.
I suppose that's another type of faith we have to cultivate, along with whatever religious beliefs we hold dear. The faith that all the little investments we make in our friends and family, along with the (sometimes accidental) investments that we make in our workplaces and our clubs and our neighborhood schools, that those investments will make some positive difference in the world, and that they will continue to make that difference long after we are gone.
We can only hope... and keep investing for as long as we can.
But it's hard not to feel left behind. And it's hard to feel that you might have been rather superfluous, that you didn't accomplish the things you intended, and you didn't leave something of real meaning to mark your passing through the world.
I can't say that I've resolved these fears and feelings for myself, or that I have anything of wisdom to impart. All I can say is that when it all comes down to the end, what we are talking about is trying to find immortality not of the body, but of something more meaningful. And setting the matter of personal spirituality aside for a moment, I can't help but think that the answer lies somewhere between how people remember us and how we touch those people's lives.
It would be easy, perhaps, to glibly say that of course people remember us fondly, and that should satisfy... but I'm not sure it is enough. After all, fondness is fairly easy for many of us, and ease tends to rob things of meaning and value. It's meaning that we're looking for, and that requires something extra. It requires us to invest enough of ourselves in something or someone that we make a difference - that our touch causes something to happen that wouldn't have happened if we had behaved differently, or if we hadn't been there.
The hard thing is that for many - perhaps most - we don't get to see that change of direction, if it happened at all. So unless we are the sort of person who gains fame or notoriety by our actions, we are largely unaware of our degree of influence in the world.
I suppose that's another type of faith we have to cultivate, along with whatever religious beliefs we hold dear. The faith that all the little investments we make in our friends and family, along with the (sometimes accidental) investments that we make in our workplaces and our clubs and our neighborhood schools, that those investments will make some positive difference in the world, and that they will continue to make that difference long after we are gone.
We can only hope... and keep investing for as long as we can.
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.
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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.
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.
-----------------------
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.
5/12/12
Cancer Is A Stupid Hobby
It's been a really bad week.
The scary thing is that we don't know why, since the Gamma Knife treatment seems to be shrinking the brain tumors we worked on a couple weeks ago, and the PET/CT scans look as though the body tumors are relatively stable or somewhat less active (although there are a couple more in the liver and lungs, they don't seem to be affecting me much per se). They were able to get to the little tumor in the back of my head on Wednesday, and the neuro guy says that the tumors are small and there is little-to-no swelling in the brain.
So why the vertigo, the nausea, the weakness, the falling, the misery of a foot that not only won't hold me up or obey my commands, but is pulling the muscles of my foot and leg in such a way that they are cramped up, frozen, and 'asleep' all the time?
I can't get up to our house any more - at the moment, that's the big issue. I am going to need to move to my folks' house in order to go to doctor appointments - and in order to do that, I need to move my hospital bed and various sick-person's accoutrements to their house. And they don't have a real guest room, so we're forced to stick me in their living room - a terrible amount of trouble and loss of privacy and fearful amount of work for them and for me.
Will the trouble itself force me into hospice care? I don't feel anywhere ready for that yet, in spite of the pain and debilitation... but there are all sorts of questions that accompany these decisions. If I get better for a while, would I be able to move back home for a bit? Would moving me back and forth be more bother for my folks than all the work and sacrifice that caring for me entails, or less? Are my folks both physically and emotionally strong enough to deal with my needs? For how long? Am I emotionally strong enough to deal with all the various changes that my condition and my living quarters are forcing on us?
Will I essentially be forced to quit treatment and abandon all hope of a bit of extra time, all because of a relatively short but unfortunately steep set of stairs between me and my doctors? At the moment, that's how I'm feeling. I'm being put down by a set of steps...
The scary thing is that we don't know why, since the Gamma Knife treatment seems to be shrinking the brain tumors we worked on a couple weeks ago, and the PET/CT scans look as though the body tumors are relatively stable or somewhat less active (although there are a couple more in the liver and lungs, they don't seem to be affecting me much per se). They were able to get to the little tumor in the back of my head on Wednesday, and the neuro guy says that the tumors are small and there is little-to-no swelling in the brain.
So why the vertigo, the nausea, the weakness, the falling, the misery of a foot that not only won't hold me up or obey my commands, but is pulling the muscles of my foot and leg in such a way that they are cramped up, frozen, and 'asleep' all the time?
I can't get up to our house any more - at the moment, that's the big issue. I am going to need to move to my folks' house in order to go to doctor appointments - and in order to do that, I need to move my hospital bed and various sick-person's accoutrements to their house. And they don't have a real guest room, so we're forced to stick me in their living room - a terrible amount of trouble and loss of privacy and fearful amount of work for them and for me.
Will the trouble itself force me into hospice care? I don't feel anywhere ready for that yet, in spite of the pain and debilitation... but there are all sorts of questions that accompany these decisions. If I get better for a while, would I be able to move back home for a bit? Would moving me back and forth be more bother for my folks than all the work and sacrifice that caring for me entails, or less? Are my folks both physically and emotionally strong enough to deal with my needs? For how long? Am I emotionally strong enough to deal with all the various changes that my condition and my living quarters are forcing on us?
Will I essentially be forced to quit treatment and abandon all hope of a bit of extra time, all because of a relatively short but unfortunately steep set of stairs between me and my doctors? At the moment, that's how I'm feeling. I'm being put down by a set of steps...
5/1/12
Quiet Day
Both visual and mental focus extremely fuzzy today, and I fell asleep last night before taking my last dose of pain meds, so it's going to be a challenging day comfort-wise.
I've decided that I am going to have a Quiet Day, in hopes that it will minimize the pain and aggravation. And in hopes that it will leave me in better shape to face tomorrow.
So today is dedicated to knitting and listening to historical documentaries on Netflix Streaming. I'm going to avoid the phone, and doctors, and paper forms, and any other useful employments.
I know that there are tons of things that need to be decided and done, and that I already do not have the time and/or ability to get them all done before I shuffle off this mortal coil. I know that taking 'time off' will mean getting even fewer of these things done. I feel badly that this will inconvenience my loved ones at some point in the future - I feel badly that this will inconvenience ME in the not-too-distant future. But the inconvenience is inevitable, so I might as well just accept that as a given. What I can hope for is that giving myself a little island of calm today will give me a bit more energy to deal with all the Stuff I'll have to deal with tomorrow.
So that's the hope. Wish me luck. And a lack of phone calls. And success in my next expedition to the bathroom and kitchen (ironically my two big projects for the day involve fetching fluid to put into me so that I then have to do what is necessary to get fluid out of me).
I've decided that I am going to have a Quiet Day, in hopes that it will minimize the pain and aggravation. And in hopes that it will leave me in better shape to face tomorrow.
So today is dedicated to knitting and listening to historical documentaries on Netflix Streaming. I'm going to avoid the phone, and doctors, and paper forms, and any other useful employments.
I know that there are tons of things that need to be decided and done, and that I already do not have the time and/or ability to get them all done before I shuffle off this mortal coil. I know that taking 'time off' will mean getting even fewer of these things done. I feel badly that this will inconvenience my loved ones at some point in the future - I feel badly that this will inconvenience ME in the not-too-distant future. But the inconvenience is inevitable, so I might as well just accept that as a given. What I can hope for is that giving myself a little island of calm today will give me a bit more energy to deal with all the Stuff I'll have to deal with tomorrow.
So that's the hope. Wish me luck. And a lack of phone calls. And success in my next expedition to the bathroom and kitchen (ironically my two big projects for the day involve fetching fluid to put into me so that I then have to do what is necessary to get fluid out of me).
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
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...
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!
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.
2/23/12
Gratitude, Thank Goodness
I have things to complain about, I suppose, but I am also incredibly grateful for many blessings. Most recently, of course, I am grateful for my beautiful granddaughter, and for her sweet and loving parents. And I give thanks daily and repeatedly for my supportive family - my parents and sister, my siblings-by-marriage and darling mother-in-law, my cousins and aunt and uncle, all of whom have kept me going when I otherwise would have fallen and given up. And nobody could ask for better friends, both near and far (you know who you are)... I depend on you, and you never let me down.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
2/19/12
And Now For Something Completely Different
I am now deprived of one of my biggest and most effective incentives for moving forward with these awful treatments. However, I can't regret the loss one bit.
I am no longer waiting to meet my granddaughter.
I am no longer waiting to meet my granddaughter.
Lorelei Katherine, otherwise known as 'The Most Beautiful Baby In The World'
2/14/12
Little Boxes
I was just watching a movie in which a person was dying of cancer. And a big part of how they indicated this was that the poor man was laying in bed, and on the side table next two him were four portentous prescription bottles of pills. They took up quite a bit of space on that little table, and were in sharp focus, so you could tell the guy was really, really sick.
Um.
I'm laying in bed at the moment, and snuggled up next to me is a large plastic shoebox, filled to the top with bottles and boxes of various medications. On the chair next to the bed are two more shoeboxes, each about half full of bottles and boxes of various pills, powders, liquids, creams, and random medical equipment. Also there is a large brown paper grocery bag, full of boxes of pre-filled syringes.
The regular stuff is, of course, in the medicine cabinet. And then there's wherever it is that my husband is storing the medications for his heart, thyroid, diabetes, and eyes.
Before I had cancer, I took the occasional allergy pill, and sometimes I took some ibuprofen for cramps. That was about it. Well, I used deodorant and toothpaste, too. But I wasn't big on medications; not because of a particular moral objection, but because they just don't work that well for me, and they always cause nasty side effects. So I stayed away from them as much as possible.
Cancer changes all that. And the ironic thing is that most of the meds you end up with are not treatments for the cancer... nope, most of it is stuff you take to try to deal with the treatments for the cancer, and what you take to try to deal with the stuff you take to try to deal with the treatments for the cancer. And it just keeps adding up, a huge avalanche of little bottles and boxes that bury you (in nearly every sense of 'bury' you can think of, including the final and permanent state).
So I suppose it's a good thing that I'm not a Hollywood Director. Because if I were, there wouldn't be a touching scene of reunion where the doting relative runs into a sunlit room and embraces her dying loved one, then sits on the side of the bed, holding hands and exchanging confidences. Nope. In my movie, the doting relative runs into a dimly lit room and frantically digs through mountains of plastic bottles and cardboard boxes, from which can dimly be heard muffled requests for help in finding the Really Good Laxative...
... and Cut.
Um.
I'm laying in bed at the moment, and snuggled up next to me is a large plastic shoebox, filled to the top with bottles and boxes of various medications. On the chair next to the bed are two more shoeboxes, each about half full of bottles and boxes of various pills, powders, liquids, creams, and random medical equipment. Also there is a large brown paper grocery bag, full of boxes of pre-filled syringes.
The regular stuff is, of course, in the medicine cabinet. And then there's wherever it is that my husband is storing the medications for his heart, thyroid, diabetes, and eyes.
Before I had cancer, I took the occasional allergy pill, and sometimes I took some ibuprofen for cramps. That was about it. Well, I used deodorant and toothpaste, too. But I wasn't big on medications; not because of a particular moral objection, but because they just don't work that well for me, and they always cause nasty side effects. So I stayed away from them as much as possible.
Cancer changes all that. And the ironic thing is that most of the meds you end up with are not treatments for the cancer... nope, most of it is stuff you take to try to deal with the treatments for the cancer, and what you take to try to deal with the stuff you take to try to deal with the treatments for the cancer. And it just keeps adding up, a huge avalanche of little bottles and boxes that bury you (in nearly every sense of 'bury' you can think of, including the final and permanent state).
So I suppose it's a good thing that I'm not a Hollywood Director. Because if I were, there wouldn't be a touching scene of reunion where the doting relative runs into a sunlit room and embraces her dying loved one, then sits on the side of the bed, holding hands and exchanging confidences. Nope. In my movie, the doting relative runs into a dimly lit room and frantically digs through mountains of plastic bottles and cardboard boxes, from which can dimly be heard muffled requests for help in finding the Really Good Laxative...
... and Cut.
2/13/12
Brief Brief
For some reason I've been very busy doing not very much. So I don't have a lot to report, but here is what there is:
My strength and pain levels seem to be very much an up and down sort of deal. So I've visited my folks a couple times, gone to the movies with my son and his fiance once, gone to the doctor for a checkup three times (once each doctor - GP, Palliative Specialist, Oncologist), and that's about it.
My appetite varies quite a bit from day to day, but the general trend is vaguely positive. Still, I am losing weight, which makes Dr. Bouncy unhappy. I'm trying.
I've been grateful for the weird lack of snow and ice this winter - the last thing I need is to deal with slipping and falling at this point.
I've been upset with my lack of a wheelchair lift for my van. Unfortunately, private insurance does not help with such things as wheelchair ramps and lifts, or other durable equipment. I would be getting out more if I were able to zip around in my chair. Grrrr.
I've been expending most of my energy at home in repelling my cat's creative and sneaky attempts to settle herself on either my stomach or my left leg. Evidently the areas that are most painful and inconvenient to me are the most appealing to her, and hers is a very persistant sort of personality. After six weeks or so, she is just starting to surrender... by which I mean that when I am awake and have thrown her off a few times, she will curl up on my shoulder or arm until I drift off to sleep, at which point she will make another attempt at the Forbidden Zones.
Although my leg and lung strength are not good, my arm strength is improving. Clearly the cat is not having my appetite issues; she evidently is eating lead weights for dinner. I should hide her under my shirt when I get weighed at the doctor's office - Dr. Bouncy would be ecstatic.
My granddaughter has decided to take the earlier generations as role models, and will evidently be making a suitably tardy appearance, much to her parents' dismay. I will announce her arrival when she decides she's good and ready. If she takes after her father, I would recommend bribery. If she takes after her paternal grandmother, I would recommend good quality chocolate.
My strength and pain levels seem to be very much an up and down sort of deal. So I've visited my folks a couple times, gone to the movies with my son and his fiance once, gone to the doctor for a checkup three times (once each doctor - GP, Palliative Specialist, Oncologist), and that's about it.
My appetite varies quite a bit from day to day, but the general trend is vaguely positive. Still, I am losing weight, which makes Dr. Bouncy unhappy. I'm trying.
I've been grateful for the weird lack of snow and ice this winter - the last thing I need is to deal with slipping and falling at this point.
I've been upset with my lack of a wheelchair lift for my van. Unfortunately, private insurance does not help with such things as wheelchair ramps and lifts, or other durable equipment. I would be getting out more if I were able to zip around in my chair. Grrrr.
I've been expending most of my energy at home in repelling my cat's creative and sneaky attempts to settle herself on either my stomach or my left leg. Evidently the areas that are most painful and inconvenient to me are the most appealing to her, and hers is a very persistant sort of personality. After six weeks or so, she is just starting to surrender... by which I mean that when I am awake and have thrown her off a few times, she will curl up on my shoulder or arm until I drift off to sleep, at which point she will make another attempt at the Forbidden Zones.
Although my leg and lung strength are not good, my arm strength is improving. Clearly the cat is not having my appetite issues; she evidently is eating lead weights for dinner. I should hide her under my shirt when I get weighed at the doctor's office - Dr. Bouncy would be ecstatic.
My granddaughter has decided to take the earlier generations as role models, and will evidently be making a suitably tardy appearance, much to her parents' dismay. I will announce her arrival when she decides she's good and ready. If she takes after her father, I would recommend bribery. If she takes after her paternal grandmother, I would recommend good quality chocolate.
2/1/12
Gratitude
I want to thank all the wonderful people who have been leaving comments on my posts here - you have all been very kind, and your words have often brought me a great deal of comfort in times when comfort is a rare and valuable commodity. I am more grateful than words can express.
1/26/12
I've Learned... Not So Much
Some people slip from this mortal coil with little warning. Others of us get some inkling that the end is near, and theoretically that means that we have time to prepare ourselves and our loved ones for our inevitable passing.
So what have I done with the past three years?
I'm not entirely sure.
There are still so many things I need to do - things to knit, things to write, things to organize - and so little time and energy with which to do them. I know it's going to be impossible to do everything I want to do, and that is so frustrating. I'm pretty realistic about my situation, I think, but that doesn't mean that I'm ready to go. I wonder if anyone ever is?
I'm afraid that I haven't learned as much as I should have about people and life and even about myself in the five decades I've been here - I feel as though I should be wiser than I am, and better prepared.
I shouldn't be as worried as I am about other people, I should have more faith that things will work out. I shouldn't be as impatient with youthful foibles as I am - after all, most of us do survive the mistakes we made as youngsters, and growing up will happen with or without my interference or assistance.
I shouldn't be sweating the small stuff at this point in my life. I shouldn't get so irritated when people don't know what to say, so they say stupid stuff ("well, you LOOK good...") I shouldn't get so confused when people say things probably meant to be complimentary ("you are such an amazing/strong/fierce fighter..." - what does that mean?) and instead just enjoy the fact that they care enough about me to say something nice. I should remember to compliment others more often, to let people know how much I appreciate them and love them.
I should have a better idea of what life is all about. You would think that with several years' warning, I'd have had time to figure all this out, but I don't think I've used the time correctly, or something, because I don't feel that I'm any wiser or better a person than I was four years ago.
What is the likelihood that I will close this huge gap in wisdom and accomplishment in a few short months, when I haven't done so in the last few years?
Which means that I will go out pretty much in the same state that I came in... wrinkled, unevenly developed, flawed, and human.
Rats.
1/19/12
Latest
Well, it was a pretty darned demoralizing visit with Dr. Bouncy today.
We looked at my just-pre-Leg-Explosion scans.
For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor. It is not a nice tame sphere of haywire cells. It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area. It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg. And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.
My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.
Ugh.
I was told earlier about the rib tumor that is expanding itself into the top section of my lung. But it turns out I also have an independent tumor in my liver.
Which is the first of what is likely to be many. Fairly soon, if this last treatment doesn't work.
Prognosis is not good. This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.
So if this treatment works better than the others, I'll have some months ahead. Probably not a year. If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.
Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.
There are a lot of practical decisions and work that are going to need doing in the next few weeks.
No rest for the wicked, I guess...
We looked at my just-pre-Leg-Explosion scans.
For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor. It is not a nice tame sphere of haywire cells. It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area. It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg. And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.
My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.
Ugh.
I was told earlier about the rib tumor that is expanding itself into the top section of my lung. But it turns out I also have an independent tumor in my liver.
Which is the first of what is likely to be many. Fairly soon, if this last treatment doesn't work.
Prognosis is not good. This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.
So if this treatment works better than the others, I'll have some months ahead. Probably not a year. If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.
Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.
There are a lot of practical decisions and work that are going to need doing in the next few weeks.
No rest for the wicked, I guess...
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...
1/11/12
They Just Can't Get Enough Of Me...
Two glorious days of uninterrupted laying in my own comfy bed... and now I'm back in the hospital, with pneumonia and who knows what.
Yeah, they just can't get enough of me.
We counted, and I was off the LDN for 9 days before all this crud started happening. I'm just saying...
Anyway, it's going to be another two or more days of cable television, I guess. Yay?
Note: No, Sam, not all hospitals in the US serve decent food. The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible. Scott occasionally sneaks in a sandwich for me, bless his heart.* Thank goodness for family support!
*I've been eating very little for a week, and my weight has gone slightly up. I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again. Argh!!!
Yeah, they just can't get enough of me.
We counted, and I was off the LDN for 9 days before all this crud started happening. I'm just saying...
Anyway, it's going to be another two or more days of cable television, I guess. Yay?
Note: No, Sam, not all hospitals in the US serve decent food. The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible. Scott occasionally sneaks in a sandwich for me, bless his heart.* Thank goodness for family support!
*I've been eating very little for a week, and my weight has gone slightly up. I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again. Argh!!!
1/5/12
Partly Exciting, Mostly Boring
The big news is that I am posting this from the hospital.
On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.
We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!). When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.
Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless). As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help. Yeah, thanks, that really was useful.
Anyway, I took the diuretic, and two hours later nothing had changed. I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing. I called the on-call line again, and this time got a doctor who actually cared. She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.
I took a second dose and went to bed. At 4am the pain became more localized to my inner thigh and groin, and was definitely worse. I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.
So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.
Turns out I have a giant blood clot, from my groin to my knee. And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects. Faux expressions of surprise, anyone?
So here I am, in the hospital, bored to tears and pretty much immobilized. My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.
If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).
The clot evidently is being caused by the cancer. This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors. Which brings me to the other news:
My scan results are back. I have had a significant progression, with more active and larger existing tumors and several new ones added. This is not surprising news, really, but it is depressing. We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.
So. I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now. I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.
What's with the holiday season always coming with bad health news? Diagnosis, progressions, they all seem to come at that time of year. I'm not liking that pattern...
*Sigh...*
On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.
We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!). When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.
Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless). As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help. Yeah, thanks, that really was useful.
Anyway, I took the diuretic, and two hours later nothing had changed. I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing. I called the on-call line again, and this time got a doctor who actually cared. She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.
I took a second dose and went to bed. At 4am the pain became more localized to my inner thigh and groin, and was definitely worse. I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.
So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.
Turns out I have a giant blood clot, from my groin to my knee. And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects. Faux expressions of surprise, anyone?
So here I am, in the hospital, bored to tears and pretty much immobilized. My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.
If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).
The clot evidently is being caused by the cancer. This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors. Which brings me to the other news:
My scan results are back. I have had a significant progression, with more active and larger existing tumors and several new ones added. This is not surprising news, really, but it is depressing. We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.
So. I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now. I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.
What's with the holiday season always coming with bad health news? Diagnosis, progressions, they all seem to come at that time of year. I'm not liking that pattern...
*Sigh...*
1/1/12
Old Year, New Year...
It's been a while, so I'll catch you up.
After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.
So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.
I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...
The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.
As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).
On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.
More later...
After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.
So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.
I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...
The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.
As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).
On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.
More later...
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