As long-time blogger friend and newly diagnosed BC Sister Nancy points out, my KomenWatch link was no longer working. So I fixed it, I hope... and added a couple more links in my BC Info section. Thanks for reminding me, Nancy. I'll try to add some more useful sites to that list for you in the next few days.
It's worth visiting the KomenWatch site; they've posted a few new articles recently, the latest on Komen's marketing of two new products and how that sort of marketing impacts the theoretical bottom line of a supposedly non-profit agency. Link from that article or this to Geoff Livingston's comments on 'Cause Competitiveness' and how it affects the bottom line of non-profits - assuming that the bottom line of a cause-related organization is to find a solution to a particular problem, and thus to eventually put itself out of business. He raises points well worth pondering.
7/15/11
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.
7/9/11
What Could Be A Significant Breakthrough
Dana Farber has a new cancer treatment in the works, and it looks like it could be a doozy. I doubt the studies will come soon enough to help me, but there is hope that the treatment could be around for my younger family members and their friends, if the time comes that they might need it.
This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins. These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing. Which is why treatments tend to stop working after a period of time.
PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.
Another protein, CDK1, regulates cell growth and is overactive in many types of cancers. Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.
Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone. Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.
This seems like a very exciting development to me. If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.
This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins. These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing. Which is why treatments tend to stop working after a period of time.
PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.
Another protein, CDK1, regulates cell growth and is overactive in many types of cancers. Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.
Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone. Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.
This seems like a very exciting development to me. If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.
7/3/11
On Hold...
We're having some fairly complicated personal stuff going on at the moment, so I'm taking a bit of time off from all but the most essential survival-oriented functions - which means it might be a few days, or even a week or two, before I post here. Don't give up on me, please. I'll get back to you eventually. In the meantime, please visit some of the lovely blogs and bloggers you will find on the right side of this page. They have plenty to say, and you may find that you make a new friend or two in the process!
6/26/11
Brief
I wrote the second installment of my vacation report here.
We had a lovely time, which is good, because this week was the opposite in just about every way possible... although it mostly has nothing to do with my cancer, so I'll just leave this past week to itself. Hopefully next week will be a little less traumatic.
In the meantime, go finish my vacation with me. I'll be here when you get back.
We had a lovely time, which is good, because this week was the opposite in just about every way possible... although it mostly has nothing to do with my cancer, so I'll just leave this past week to itself. Hopefully next week will be a little less traumatic.
In the meantime, go finish my vacation with me. I'll be here when you get back.
6/17/11
A Quick Note...
In case you were wondering where I had gotten to - I was in South Dakota and Wyoming, having a lovely time with My Boys. If you are interested, I've posted the first installment of my report at my other blog, here. I'll get around to the rest of it soon, I promise!
6/5/11
Now and Again
I've had a bit of a rough week. I had a sudden ramp-up of hip pain this past weekend, ending with a trip to the ER for high fever (102.8 F, which is considerably higher than they like to see temps on a chemo patient, since we don't have proper immune function to help us recover from infection).
They couldn't find the reason for the fever, but pumped me full of saline and NSAIDs and sent me home - after all, I had a chemo appointment the next morning.
The pain in my hip has been joined by fairly severe leg pain, so I haven't been sleeping well all week. And the Abraxane is raising my blood sugar to unprecedented levels, which leaves me feeling rather dizzy and unwell.
But all is not lost. Or at least, hopefully there is some hope that things aren't dire. From the patterns I saw last weekend (fever lower after 1/2 liter saline, lowered to normal temps after next day's additional 1 liter saline w/chemo), my feeling is that the fever was actually caused by dehydration and perhaps bad electrolyte levels... because now I'm building up a fever again. I don't know WHY I'm suddenly prone to dehydration - well, it's been hotter, so I've been sweating a bit more than has been the case previously. But only a bit. You wouldn't think it was enough to cause major problems, but who knows what chemo does to the individual system? Nothing is working the way it should.
But at least it's helpful to know what's going on, at least in part, and that something can be done about it.
So. If the fever is still there in the morning (I've been forcing fluids all afternoon and evening), I'll go in to the ER again in the morning and get a nice refreshing saline drip, in hopes that it will give me enough fluids to keep me reasonably functional for a week or so. And maybe have them check out the leg while we're at it.
Wish me luck. I'm heading out on a trip soon... I'm hoping to enjoy it from somewhere other than an ER bed!
They couldn't find the reason for the fever, but pumped me full of saline and NSAIDs and sent me home - after all, I had a chemo appointment the next morning.
The pain in my hip has been joined by fairly severe leg pain, so I haven't been sleeping well all week. And the Abraxane is raising my blood sugar to unprecedented levels, which leaves me feeling rather dizzy and unwell.
But all is not lost. Or at least, hopefully there is some hope that things aren't dire. From the patterns I saw last weekend (fever lower after 1/2 liter saline, lowered to normal temps after next day's additional 1 liter saline w/chemo), my feeling is that the fever was actually caused by dehydration and perhaps bad electrolyte levels... because now I'm building up a fever again. I don't know WHY I'm suddenly prone to dehydration - well, it's been hotter, so I've been sweating a bit more than has been the case previously. But only a bit. You wouldn't think it was enough to cause major problems, but who knows what chemo does to the individual system? Nothing is working the way it should.
But at least it's helpful to know what's going on, at least in part, and that something can be done about it.
So. If the fever is still there in the morning (I've been forcing fluids all afternoon and evening), I'll go in to the ER again in the morning and get a nice refreshing saline drip, in hopes that it will give me enough fluids to keep me reasonably functional for a week or so. And maybe have them check out the leg while we're at it.
Wish me luck. I'm heading out on a trip soon... I'm hoping to enjoy it from somewhere other than an ER bed!
5/31/11
How Big Pharma and the Government Work... For You?
This isn't about cancer - yet it is. Or MS - yet it is. Or Parkinson's Disease - yet it is.
This is partly about Lyme disease - which is a rapidly spreading epidemic that we aren't hearing nearly enough about. It's a bigger risk to you and your family's health than West Nile and AIDS combined. If caught early, most people can avoid serious effects - but some will have serious, even deadly consequences, and need more serious treatment.
My mother-in-law, and many of her neighbors, got Lyme Disease, and got the more serious neurological and immune system versions. They had flu symptoms, cognitive function issues, became wheelchair-bound, clinical depression, debilitating nerve pain, movement disorders, immune system disorders. My mother in law was eventually able to get the long-term heavy-duty antibiotic treatment that treated the problem. A treatment that now, because of the actions of a few individuals, you and your friends and family will not find available.
And so the documentary is about Lyme Disease, but it is also about how the government and insurance companies and Big Pharma work together to keep you sick, and even dying... for profit. Not because they are evil, but because it's easier (especially on their pocketbooks) than thinking about the long-term consequences of their actions.
Many of the people who see this documentary will be shocked. Which they SHOULD be.
We should be shocked enough to take action.
Watch the movie "Under Our Skin". You can see it on Netflix Instant Watch, you can rent the dvd from Netflix, you can buy the dvd, or you can watch it on your local public television station if it is coming soon - here's a good link to info on the documentary and the calendar of showings on PBS stations in your state.
You probably won't be happy to know what you will know after watching this show - but if it helps a few of us avoid the more serious disease, and if it helps a few of us who do have the serious disease get better, it's worthwhile. And if it starts making people aware of the way in which insurance companies and the FDA control research and healthcare in this country, and if they take action, perhaps we can find better treatment for other serious diseases in this country.
Breast cancer, for instance.
This is partly about Lyme disease - which is a rapidly spreading epidemic that we aren't hearing nearly enough about. It's a bigger risk to you and your family's health than West Nile and AIDS combined. If caught early, most people can avoid serious effects - but some will have serious, even deadly consequences, and need more serious treatment.
My mother-in-law, and many of her neighbors, got Lyme Disease, and got the more serious neurological and immune system versions. They had flu symptoms, cognitive function issues, became wheelchair-bound, clinical depression, debilitating nerve pain, movement disorders, immune system disorders. My mother in law was eventually able to get the long-term heavy-duty antibiotic treatment that treated the problem. A treatment that now, because of the actions of a few individuals, you and your friends and family will not find available.
And so the documentary is about Lyme Disease, but it is also about how the government and insurance companies and Big Pharma work together to keep you sick, and even dying... for profit. Not because they are evil, but because it's easier (especially on their pocketbooks) than thinking about the long-term consequences of their actions.
Many of the people who see this documentary will be shocked. Which they SHOULD be.
We should be shocked enough to take action.
Watch the movie "Under Our Skin". You can see it on Netflix Instant Watch, you can rent the dvd from Netflix, you can buy the dvd, or you can watch it on your local public television station if it is coming soon - here's a good link to info on the documentary and the calendar of showings on PBS stations in your state.
You probably won't be happy to know what you will know after watching this show - but if it helps a few of us avoid the more serious disease, and if it helps a few of us who do have the serious disease get better, it's worthwhile. And if it starts making people aware of the way in which insurance companies and the FDA control research and healthcare in this country, and if they take action, perhaps we can find better treatment for other serious diseases in this country.
Breast cancer, for instance.
5/23/11
Leave Me Alone, Part II
I think I've figured out at least part of the hospice people's claim about people losing interest in the world as they get closer to death.
I don't know that it's losing interest, so much as it's losing the ability to express interest.
My experience of this chemo thing is that as the side effects get ickier, and as fatigue drains my focus and my internal resources, my interest in the world - and in people - becomes more receptive and less expressive, if that makes sense.
There are a lot of things that I would very much like to do, and many people that I very much want to interact with... but getting up the energy and focus to actually do even very simple things takes so much effort and seems to eat up so much time that I simply don't have the ability to talk/write to the people I'd like to interact with, or do the things I'd like to do.
By the time I get up (before 7am), stop the nosebleed, eat a meal, either go to a doctor appointment or skim through my emails, maybe have a snack, stop another nosebleed, take a nap, eat dinner, spend a few minutes with my husband and/or kid... I might have a little time to either write a couple short emails OR watch a bit of television OR write a post to one of my blogs OR talk to one person on the phone somewhere in there. Maybe. And that will pretty much wipe me out, and I'll go to bed at around midnight. Or later.
Seriously, that's more than half my days, right there. You would think there was plenty of time to do lots of other stuff in there, but somehow for me there isn't. Things just seem to take forever to do.
I suspect I must do a lot of staring into space or something, while I martial the energy to breathe. But I'm not consciously aware of that part.
When someone is there in front of me, I love to be with them. And I think about all of you - I definitely have not lost interest. I love to hear from you, I enjoy our talks, I am curious about what you are doing. I've just lost the ability to chase after you: to write the post, to write the email, to call you up, to send the card.
I know it's pretty easy to interpret that as a loss of interest. But that's not it. It's more a loss of my place in the Space/Time Continuum. Somehow my days are only 3 hours long or so, even though the demands on my time are the same as they were when I had a full 24 hours.
So feel free to write, or call, or even make a lunch date. I'm listening. It's just hard for me to catch you when you are all running past so very quickly...
I don't know that it's losing interest, so much as it's losing the ability to express interest.
My experience of this chemo thing is that as the side effects get ickier, and as fatigue drains my focus and my internal resources, my interest in the world - and in people - becomes more receptive and less expressive, if that makes sense.
There are a lot of things that I would very much like to do, and many people that I very much want to interact with... but getting up the energy and focus to actually do even very simple things takes so much effort and seems to eat up so much time that I simply don't have the ability to talk/write to the people I'd like to interact with, or do the things I'd like to do.
By the time I get up (before 7am), stop the nosebleed, eat a meal, either go to a doctor appointment or skim through my emails, maybe have a snack, stop another nosebleed, take a nap, eat dinner, spend a few minutes with my husband and/or kid... I might have a little time to either write a couple short emails OR watch a bit of television OR write a post to one of my blogs OR talk to one person on the phone somewhere in there. Maybe. And that will pretty much wipe me out, and I'll go to bed at around midnight. Or later.
Seriously, that's more than half my days, right there. You would think there was plenty of time to do lots of other stuff in there, but somehow for me there isn't. Things just seem to take forever to do.
I suspect I must do a lot of staring into space or something, while I martial the energy to breathe. But I'm not consciously aware of that part.
When someone is there in front of me, I love to be with them. And I think about all of you - I definitely have not lost interest. I love to hear from you, I enjoy our talks, I am curious about what you are doing. I've just lost the ability to chase after you: to write the post, to write the email, to call you up, to send the card.
I know it's pretty easy to interpret that as a loss of interest. But that's not it. It's more a loss of my place in the Space/Time Continuum. Somehow my days are only 3 hours long or so, even though the demands on my time are the same as they were when I had a full 24 hours.
So feel free to write, or call, or even make a lunch date. I'm listening. It's just hard for me to catch you when you are all running past so very quickly...
5/22/11
Week 3 of Round 2...
The third week of abraxane, second round, is kicking my butt a bit, and what with funeral and doctor appointments and feeling off-kilter, I've been taking a bit of a break from the blogosphere. Mostly this consists of napping. Or thinking about napping. Or trying to nap, but feeling a bit too yucky to manage to get to sleep. I might even dream about napping, I'm not sure... I'm asleep at the time.
Next week is Chemo Vacation Week, so I'm hoping to recover a bit. If I do, I'll do a real post.
Not that a 'real' post will be a big thrill to anyone, but I'm looking forward to having enough energy and brain power to manage it.**
In the meantime, if you want to read about something more substantive, go over to Donna's blog and read a bit about the Avastin issue. I think there are good arguments on both sides of the debate, so linking from her blog and doing more research is a good idea.
**If my idea of a 'real' post turns out to be inane babbling, please don't let me know. The whole 'chemo brain' thing is freaking me out enough, as it is. Leave me my delusions of coherence, and collect karma points for cyber-neighborliness.
Next week is Chemo Vacation Week, so I'm hoping to recover a bit. If I do, I'll do a real post.
Not that a 'real' post will be a big thrill to anyone, but I'm looking forward to having enough energy and brain power to manage it.**
In the meantime, if you want to read about something more substantive, go over to Donna's blog and read a bit about the Avastin issue. I think there are good arguments on both sides of the debate, so linking from her blog and doing more research is a good idea.
**If my idea of a 'real' post turns out to be inane babbling, please don't let me know. The whole 'chemo brain' thing is freaking me out enough, as it is. Leave me my delusions of coherence, and collect karma points for cyber-neighborliness.
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