Today we had a visit with someone we've never met before, a nurse practitioner who was theoretically standing in for Dr. Bouncy. Unfortunately she left my mother in tears and a degree of maternal distress that was very difficult to see. I have to admit that she also left me in a degree of internal distress that was somewhat difficult to experience, as well...
For one thing, she made it clear that Dr. B either misinformed us or had changed his mind without consulting us in any way; the option for clearing my meningeal lining of cancer cells has been vetoed, will-we or nil-we, as has any other treatment options than kicking us unceremoniously out of the hospital as soon as I no longer have a condition that they are legally required to treat. In other words, as soon as my current course of radiation is through on Friday, we're out of here unless I literally cannot move - if, for instance, I have a heart attack or my organs fail or I am completely incontinent due to radiation damage to my intestines (not an entirely unlikely scenario).
This, in spite of the fact that it will be a holiday weekend, with the attending short staffs and unavailable rooms that usually accompany said weekends. That is, according to the Nurse Practitioner of Doom, our problem and not theirs. We should have had our ducks in a row and our papers all in order, in spite of the sudden and unexpected onset of my crisis. After all, we've had at least a week to adjust...
Speaking of adjustments. Today's radiation treatment, intended to be a two-parter with one treatment in the morning and one in the afternoon, turned out to be a single. One of the radiation machines went on the fritz. Again. Which was possibly a blessing, as the a.m. treatment was once again very painful, and unfortunately the condition of my leg and foot and back has degraded since then. I am having intestinal issues already, my leg and hip and foot are more swollen and painful than they have been in a long time, and we are now slated for two treatments tomorrow, instead of today. My team is asking me to make decisions about pain meds, but I have no idea what was working on Tuesday that is so clearly not working today.
So. Tomorrow is another day. Let's hope maybe somewhat better - good news on the housing front would be nice, for instance, and less pain and swelling in the leg and hip and back would be better still.
We'll see......
Showing posts with label Thoughts and Feelings. Show all posts
Showing posts with label Thoughts and Feelings. Show all posts
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.
----------
Well, that was written a few days ago, and then I got distracted (are you surprised?), and then we lost internet ability until now.
We lost it because by necessity I moved to my parents' house, and in order to make room for me they had to unplug their office stuff, including the router. But today a very nice man who belongs to this Club of ours that nobody wants to be in (people who either are dying of cancer or who have lost a beloved family member to cancer) came in and set everything up for us. So I'll get a couple more posts out to you, I hope. But probably not many.
In a few short days I've lost the use of one foot completely, it's a useless thing that flops or folds over agonizingly when I try to drag it along with me. I am halfway on the way to losing the other, and feel the beginnings of loss in the hands. First things go numb, then painful pins and needles along with numb - and at that point they are gone, useless. Every day I am feeling things slipping away, right as it happens.
I promised I'd be honest, so here goes. That is not the only stuff that is going numb, and losing muscle power. Front and back, the abdominal areas are starting to go bad, too. And the stuff that is connected to the abdominal areas. At the current rate of deterioration, I won't have many days (maybe tomorrow?) before things are going to get very unpleasant, and very difficult.
Well, things are already unpleasant and difficult, but everything is relative. There's unpleasant and difficult. And then there's unbearable.
I'm at the tipping point here. Every day I can literally feel my functions slip away. My poor right leg will not hold me up very much longer, I think. A day or two, maybe? If I don't end up at the hospital this weekend, I will probably be going there or to a hospice residence fairly soon after that. I don't know if I'll be lucky enough to go fairly quickly after that, or if (it seems more likely) I will have a very ugly period in which I am somewhere between being in very awful pain and being drugged up to the point of a coma (if they can manage it, given how badly I react to just about every drug ever made).
The cruel thing is that what is so obviously the only humane thing to do for our suffering beloved cats and dogs is a mercy that we will not allow our human loved ones. When our kitty started really suffering, we were able to hold her and pet her and let her know that she was loved, she was able to be comfortable and comforted, and then she just went to sleep... just a few short peaceful seconds, and she was gone. She didn't have to get to a point where she was in terrible pain, she didn't suffer the indignities of losing her basic physical and brain functions. She got to be herself, she got to say goodbye, she got to feel our love.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
But we have no choice. It's the one area where I'm afraid we will never agree with those who feel that their personal religious beliefs should be prescribed into law/government for all. In this case, we have a division of church and state except that for some reason other people's religious beliefs are in charge of my life, and my own feelings and beliefs don't matter one bit. We have fits over whether our kids see Santa wandering down school hallways, but it's okay for other people to decide the manner of my passing from this world into the next... I am forced to suffer terribly, whether it's right or not, whether it's MY life or not. Scott and my parents will have to pay for it, both emotionally and financially, even though none of us want it - hospice care in a facility costs upwards of $9,000 per month AFTER insurance pays their bit. If you are lucky enough to have insurance - or to be eligible for Medicare, which I am not. Unfortunately I am not alone there, and some people don't have insurance or kind relatives to help out - imagine someone in my position, but they are homeless. Not a nice thought... and not a nice thing to experience.
So I am lucky in one way - but still, it's hard to look at my present or my future and feel that way.
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5/18/12
Life and Death
When we drove here, I knew that it was the last time I was going to really feel fresh air on my face, the last time I was going to see the city skyline against the blue sky, the last time I was going to see the purple and white iris exploding with riotous exuberance in their garden plots. I knew it was the last lovely thing I would share with my beloved. It was beautiful, and it was bitter.
This morning I woke up to the sound of birdsong. I lay still for a few minutes, my eyes closed, and for that few minutes I felt... like me. Normal. As though I could get up and take a walk in the morning's tender light. As though I was going to live to see my son and baby granddaughter grow up, and celebrate holidays with my beautiful and loving family, and share romantic getaways with my husband, and make colorful soft textiles with my once-clever hands, and laugh with my friends. It was beautiful, and it was bitter.
4/26/12
Things Are Different...
Hmm... Blogger is looking very different, and now is not a good time for things to get all different on me. Why do things get more complicated right when the brain is getting beyond figuring out new things?
Frankly, the brain is getting beyond figuring out old things.
Here is what has been happening:
The smallest of the brain tumors turned out to be further down and back in my brain than they thought, and so they were not able to treat it with the Gamma Knife treatment along with the other two tumors. At the time, they spoke of trying other treatments in May... either a different targeted treatment or whole brain radiation. Or of course the choice of letting the tumor grow untreated - a quick and unpleasant death to follow. The plan was to do another brain scan mid-May, which might give us a better idea of what options would be available.
In the meantime, we found out that the steroids that keep brain swelling down also interfere with the effectiveness of the chemo treatment that I am taking. A PET/CT scan last week showed a mixed pattern of tumor growth and regression. I also have been suffering from a great deal of pain in the foot and hip, some of which is due to side effects from the chemo, and some of which is due to lymphedema in the hip and leg and foot (which is worsened by the steroids). Unfortunately because of the huge tumor in my hip, it turns out that I have very few options in treating the lymphedema, which is interfering with both comfort and mobility. So we decided to minimize the steroid as much as possible, and to skip doses of chemo on occasion in order to give my foot and hip a bit of recovery time, while still hopefully getting some slowing of tumor growth from a lower dose of the chemo.
Unfortunately, this past Saturday I woke up with severe dizziness, nausea, vertigo, vomiting - and when I tried to get to the bathroom, I fell and found that I could not walk.
Subsequently, I have been off the chemo for a week and on three days of intensive steroid treatment. Things have improved somewhat, but I am now using a walker and still suffering from dizziness and nausea, and the combination of chemo and steroid I am now on probably pretty much cancel each other out in terms of effectiveness. We are definitely in Experimentation Territory at this point. Dr. Bouncy and I are neither of us happy with the situation, but there are no clear roadmaps as to what would be the best tactics to use, so we are just guessing and compromising and hoping for the best.
In the meantime, we are still not sure what caused the sudden problems described above. It could be a reaction of brain tissue to the Gamma Knife treatment. It could be quick growth of the untreated tumor. It could be a combination of the two. Or perhaps something else.
The neurologic radiation specialist has (in consultation with another radiologist) decided that our best bet is to treat the smallest tumor via Gamma Knife on the 9th of May. They will do a scan just before the treatment, which should tell us if part of the trouble is tissue swelling and/or bleeding from the prior treatment, but they feel that the most important thing right now is to try to keep that little tumor from growing any more than is necessary, and that Gamma Knife is our best bet for doing that.
So that is the story at the moment. Frankly, I feel that so much of this is basically a matter of flying blind and guesswork. There are so many unknowns, and so many decisions to be made on a dearth of information.
At the same time, we are trying to make a lot of decisions about my living situation and treatments in the near future, also largely to be made on a dearth of information - my quality of life, side effects, treatment effectiveness, insurance and financial situations, all seem to change rapidly and without warning. None of these decisions are made easier by my brain function and emotional situation being messed up by the various meds and tumors and who knows what else...
So. I apologize for the lack of focus and clarity in this post. I hope that things will get a little better with a lowering of steroid dosage, although I cannot make any promises on that front. I will try to update you as things go along, assuming that I am able to understand anything that is going on, myself!
Frankly, the brain is getting beyond figuring out old things.
Here is what has been happening:
The smallest of the brain tumors turned out to be further down and back in my brain than they thought, and so they were not able to treat it with the Gamma Knife treatment along with the other two tumors. At the time, they spoke of trying other treatments in May... either a different targeted treatment or whole brain radiation. Or of course the choice of letting the tumor grow untreated - a quick and unpleasant death to follow. The plan was to do another brain scan mid-May, which might give us a better idea of what options would be available.
In the meantime, we found out that the steroids that keep brain swelling down also interfere with the effectiveness of the chemo treatment that I am taking. A PET/CT scan last week showed a mixed pattern of tumor growth and regression. I also have been suffering from a great deal of pain in the foot and hip, some of which is due to side effects from the chemo, and some of which is due to lymphedema in the hip and leg and foot (which is worsened by the steroids). Unfortunately because of the huge tumor in my hip, it turns out that I have very few options in treating the lymphedema, which is interfering with both comfort and mobility. So we decided to minimize the steroid as much as possible, and to skip doses of chemo on occasion in order to give my foot and hip a bit of recovery time, while still hopefully getting some slowing of tumor growth from a lower dose of the chemo.
Unfortunately, this past Saturday I woke up with severe dizziness, nausea, vertigo, vomiting - and when I tried to get to the bathroom, I fell and found that I could not walk.
Subsequently, I have been off the chemo for a week and on three days of intensive steroid treatment. Things have improved somewhat, but I am now using a walker and still suffering from dizziness and nausea, and the combination of chemo and steroid I am now on probably pretty much cancel each other out in terms of effectiveness. We are definitely in Experimentation Territory at this point. Dr. Bouncy and I are neither of us happy with the situation, but there are no clear roadmaps as to what would be the best tactics to use, so we are just guessing and compromising and hoping for the best.
In the meantime, we are still not sure what caused the sudden problems described above. It could be a reaction of brain tissue to the Gamma Knife treatment. It could be quick growth of the untreated tumor. It could be a combination of the two. Or perhaps something else.
The neurologic radiation specialist has (in consultation with another radiologist) decided that our best bet is to treat the smallest tumor via Gamma Knife on the 9th of May. They will do a scan just before the treatment, which should tell us if part of the trouble is tissue swelling and/or bleeding from the prior treatment, but they feel that the most important thing right now is to try to keep that little tumor from growing any more than is necessary, and that Gamma Knife is our best bet for doing that.
So that is the story at the moment. Frankly, I feel that so much of this is basically a matter of flying blind and guesswork. There are so many unknowns, and so many decisions to be made on a dearth of information.
At the same time, we are trying to make a lot of decisions about my living situation and treatments in the near future, also largely to be made on a dearth of information - my quality of life, side effects, treatment effectiveness, insurance and financial situations, all seem to change rapidly and without warning. None of these decisions are made easier by my brain function and emotional situation being messed up by the various meds and tumors and who knows what else...
So. I apologize for the lack of focus and clarity in this post. I hope that things will get a little better with a lowering of steroid dosage, although I cannot make any promises on that front. I will try to update you as things go along, assuming that I am able to understand anything that is going on, myself!
4/11/12
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!
4/4/12
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
3/6/12
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!
2/23/12
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.
2/14/12
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.
2/1/12
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.
1/1/12
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...
12/2/11
Xeloda, Week 4
It's my fourth week on the Xeloda: 3,000mg, which is 3 pills twice a day, on a 7 Days On/7Days Off schedule.
The side effects have not been good for me, which is not surprising. Extreme fatigue, muscle weakness, heartburn, diarrhea, abdominal discomfort, numbness and tingling and a feeling like splinters in my feet and fingers... and worst of all for me, extreme joint pain in my hips and left leg, plus back pain and muscle cramping.
This is bad, but I count pain (even the debilitating sort, which this is - I'm nearly housebound the entire time, and pretty much w-bound for a good amount of time) as less awful than depression, so at the moment I prefer this to the Gemzar, all things being equal. But that equality thing turns out to be a significant issue.
Unfortunately, I just found out that my recent tumor markers showed a fairly significant rise - around 20%. Not entirely a surprise, since the little tumor in my chest wall is showing up again, and it seems to be a pretty reliable reflection of what is going on elsewhere in my body. But definitely not what I wanted to hear.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
That said, he wants to give the Xeloda more time to work. Evidently it can sometimes cause tumor flare before it brings things down, and sometimes it just plain takes a while to kick in. I will be having another marker test and a couple scans (CT/PET/MRI) at the beginning of January, so he wants to see how things look then before making a decision to go back to the dreaded Gemzar (and accompanying steroids, Benadryl, etc).
This is very disheartening. Well, terrifying, really - when your tumor load is heavy, even small increases are significant, and when your cancer is agressive you don't like to give it time to grow with failing treatments. Especially treatments that pretty much take away your quality of life while they are (possibly) doing nothing to stop the Monster.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
Damn.
9/7/11
A Bit Of This, A Bit Of That
So a few brief updates:
First of all, my Chemo Buddy Jill just 'graduated' today. From here until at least next spring, she won't have to have any treatments or scans or anything, barring unexpected happenstance (which darn well better not occur, or I will have very stern words for the Powers That Be).
I have mixed feelings - on one hand, I will miss her wonderful spirit and entertaining company, and that of her husband, as well. I also have to admit to a tinge of jealousy.
On the other hand, I'm just thrilled for her, and have very high hopes that she will do excellently. And it's always heartening to get good news when dealing with this monster. I wish Jill health and happiness for many years to come!
Celebrate!!
First of all, my Chemo Buddy Jill just 'graduated' today. From here until at least next spring, she won't have to have any treatments or scans or anything, barring unexpected happenstance (which darn well better not occur, or I will have very stern words for the Powers That Be).
I have mixed feelings - on one hand, I will miss her wonderful spirit and entertaining company, and that of her husband, as well. I also have to admit to a tinge of jealousy.
On the other hand, I'm just thrilled for her, and have very high hopes that she will do excellently. And it's always heartening to get good news when dealing with this monster. I wish Jill health and happiness for many years to come!
-------------------------------
Scylla and Charybdis
On the disconcerting side, my chemo nurse pointed out that my red cell count (at least the immature ones) were sufficient, and that my continued shortness of breath and extreme fatigue/weakness was probably a sign of heart damage. This is not uncommon with many of the chemos, including the ones I have had, and the risks are compounded by the pre-med steroids (see below).
Lucky me. The disconcerting thing is that in a way, dropping dead of a heart attack would be relatively merciful, compared to the death that my particular form of cancer would give me. It seems pitiful and cruel that I might be put in the position of actually wishing to have a heart attack. And of course, it also is pitiful and cruel that the chemo that theoretically is giving me more time with functioning hips/spine is at the same time taking away my ability to take advantage of those things - I am so fatigued and weak that most days I can't walk across a room without getting out of breath and having to sit down and/or take a nap. Forget doing anything useful around the house, or doing things with friends and family - I rarely have the strength any more, even when the chemo side effects are less awful. I am turning into a useless lump, which is not much fun for me and unkind to those who care for me.
Not to mention that I would hate to have my death listed on the 'heart disease' statistics, rather than the cancer death stats. This is not unusual, and allows a couple statistical boondoggles that I detest. By listing chemo-damage deaths to be listed as caused by heart disease rather than cancer or chemo-caused deaths, it makes the oncology stats look much more promising than they actually are. It also allows the pharmaceutical companies to simultaneously not take responsibility for chemo-caused deaths AND gives them even more excuse to push more and more people into taking statins and other highly profitable 'chronic disease' drugs by artificially inflating the 'heart disease' statistics.
----------------------------
Not Dead Yet...
This last week has been a mixed bag, side-effect-wise. Dr. Bouncy raised my steroid prescription with my chemo pre-meds, and added another dose at the end of the week. This means that the risks (including, ahem, heart damage) and side effects from the steroids are increased, which is not good. But on the other hand, my fever stayed within reasonable bounds (99-101), and I got a few extra days of a bit less exhausted and a bit less bone/joint pain.
Which means a few more days of relative functionality - weak and puffy and fluish, but able to sit up and watch TV and write a few emails, which is an improvement on spending the entire week in bed, trying not to cry. I even got two evenings of dining with friends and family this holiday weekend, although I spent a good part of one of them napping (sorry, mom - hopefully tromping us soundly in Bridge helped to make up for the rudeness of the early neglect...).
The chemo effects are accumulative, so things will be harder this week and harder again next week, but I am hopeful that I'll get at least a couple not-too-terrible days out of it. At this point I am grateful for small favors.
------------------------------
Notice
Blogger friend Donna has an announcement about a new Phase II trial for metastatic breast cancer patients. It's worth going over there to check it out if you think you might be interested in volunteering. That said: I do believe in trials, especially ones that are checking out drugs that are relatively new to breast cancer treatment, but please also check out my comment on Donna's post - I do think this one needs a bit of research and weighing in the balance before a decision should be made.
------------------------------
Thanks!
My poor sister fell last week and tore up a lot of ligaments and muscles on her entire right side, leaving her in a good deal of pain and pretty much unable to do anything. There has also been a death in the family this week. This means that my mom has been very busy taking sis to hospital and doctors offices, as well as doing a lot of nursing her at home, and now she has a visitation to somehow wedge into her already overwhelming schedule.
Dad stepped up to the plate today; he drove me to chemo, was not at all cranky when it turned out that they delayed my treatment for several hours (post-holiday overbooking led to several timing errors and issues), and ran out to make me a very nice lunch when it turned out I was going to need it during my dragged-out infusion. It was a real blessing; I was feeling really woozy from the high-dose Benadryl, among other things, and getting that food really helped get me 'grounded' and much less shaky, thank goodness.
My son has promised to take me to treatment on Friday, as he did last week, in order to spare my mom the trouble during what has been a very stressful week for her.
Thanks to Dad and to Bren. I appreciate your help and company very much, indeed.
And thanks to Mom for volunteering for the job most weeks. I don't know what I'd do without you, but I know it wouldn't look good. You are the best!
8/2/11
No News Is Bad News...
So the news isn't good. The Circulating Tumor Cell only found one cell in the sample. One is about what you'd expect to find in a healthy person, if the test was going to be effective for your particular cancer. So no CTC test for me after this - and no help in finding a working treatment quickly enough to be truly useful.
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...
Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.
More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.
So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.
And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.
Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??
7/25/11
Well, That Sucks...
Unfortunately, my cancer seems to be more clever than I am. At least, it seems to be very quick to work around whatever we throw at it.
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
Bad news from the scan: the tumors are roaring ahead again, full speed ahead.
On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.
Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**
**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...
7/22/11
Long Time No Write
As blogging friend Nancy points out, I guess I haven't written in a little bit. This is because things have been happening too fast. Not all bad, not all good, but lots of stuff that keeps me busy and off the computer.
For one thing, a very old friend came across the country to visit, and that took up several days. We drove down the River Road, we went to the Science Museum to see the King Tut exhibit, we caught up on a year's worth of news and many decades of reminiscences. And we ate and we ate and we ate. Some restaurants were disappointing - my friend is a Foodie, and was hugely looking forward to eating to the nationally renowned Piccolo, whose food turned out to be largely bland and uninteresting.
On the other hand, we had the
Best.
Meal.
Ever.
We went to La Belle Vie in Minneapolis and indulged in the 8-course Chef's Tasting Menu (plus the Amuse Bouche beforehand and the Petit Fours afterwards), and the guys added to that the matching wine flights (I tasted each wine but did not indulge). Each plate was a treasure unto itself, the company was more than convivial, and a great time was had by all.
On either side of the visit was your usual family activities, and then an unfortunate necessity - we had to put our poor old kitty down. Her body had been breaking down for quite a while, but the degeneration had accelerated over the last couple months, and was achieving critical mass by last week. She was a charming, beautiful, quirky, curmudgeonly personality who added much to our enjoyment of the past 16 years. She will be greatly missed.
She is also a very good argument for adopting adult animals from your local animal shelter. If you don't have a need for a pet, please go to your local animal shelter and make a donation. Even small amounts will keep a number of animals alive long enough to find loving homes.
For one thing, a very old friend came across the country to visit, and that took up several days. We drove down the River Road, we went to the Science Museum to see the King Tut exhibit, we caught up on a year's worth of news and many decades of reminiscences. And we ate and we ate and we ate. Some restaurants were disappointing - my friend is a Foodie, and was hugely looking forward to eating to the nationally renowned Piccolo, whose food turned out to be largely bland and uninteresting.
On the other hand, we had the
Best.
Meal.
Ever.
We went to La Belle Vie in Minneapolis and indulged in the 8-course Chef's Tasting Menu (plus the Amuse Bouche beforehand and the Petit Fours afterwards), and the guys added to that the matching wine flights (I tasted each wine but did not indulge). Each plate was a treasure unto itself, the company was more than convivial, and a great time was had by all.
On either side of the visit was your usual family activities, and then an unfortunate necessity - we had to put our poor old kitty down. Her body had been breaking down for quite a while, but the degeneration had accelerated over the last couple months, and was achieving critical mass by last week. She was a charming, beautiful, quirky, curmudgeonly personality who added much to our enjoyment of the past 16 years. She will be greatly missed.
She is also a very good argument for adopting adult animals from your local animal shelter. If you don't have a need for a pet, please go to your local animal shelter and make a donation. Even small amounts will keep a number of animals alive long enough to find loving homes.
7/13/11
I Love My Friends
Some of my wonderful women friends are getting bad news this week. They are looking at some of the same hard choices that I have either had to make in the past, or that I am making now.
Some of them are making these choices for the first time; I remember how scary that was when I was looking into that great unknown. I also remember how angry I was as I found out more about the choices I wasn't being offered (or allowed to make).
Some of them are making these choices again, the latest exercise in a long line of choosing between one evil and another. The quality of the scared and angry is a bit different with wear and tear, but it's still there. The choices aren't easier - although we know a bit more, through research and experience, we're still facing some great unknowns.
It sucks, no matter how you look at it.
Unfortunately, although I can offer information, and more importantly my sympathy and support, I cannot offer answers or fixes. As far as I can find, there aren't any of those out there.
But I can offer love. I'm thinking of you every day, my sisters; I cannot hold you in my arms, but I hold you in my heart - as I know you hold me in yours. In that connection, at least, we are strong.
Some of them are making these choices for the first time; I remember how scary that was when I was looking into that great unknown. I also remember how angry I was as I found out more about the choices I wasn't being offered (or allowed to make).
Some of them are making these choices again, the latest exercise in a long line of choosing between one evil and another. The quality of the scared and angry is a bit different with wear and tear, but it's still there. The choices aren't easier - although we know a bit more, through research and experience, we're still facing some great unknowns.
It sucks, no matter how you look at it.
Unfortunately, although I can offer information, and more importantly my sympathy and support, I cannot offer answers or fixes. As far as I can find, there aren't any of those out there.
But I can offer love. I'm thinking of you every day, my sisters; I cannot hold you in my arms, but I hold you in my heart - as I know you hold me in yours. In that connection, at least, we are strong.
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