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.
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.
5/16/11
A Brief Update...
I'm fine, more or less - just having a very busy week or two.
I did manage to get to a local sheep & wool festival and even sold a wheel, along with several items from my friend's adjoining table. I was SO glad to have been able to attend, since that was seriously in question during the weeks previous, when I was very crippled up with pain in my hip. I not only got to spend the weekend with my lovable husband and my good friend Denise, but I also met several delightful past acquaintances and some lovely new-people-who-are-now-delightful-acquaintances.
I followed that up with the second week's infusion of this 3-week round of chemo. Plus I actually managed to get to both my acupuncture appointment and my healing-touch appointment, both very helpful.
On Sunday I got to go to my exceedingly bright and beautiful niece's high school production of 'Phantom of the Opera' - and yes, they did manage to do an excellent job of it, in spite of the Andrew Lloyd Webber score being extremely challenging for such young artists. Afterwards we had delicious cake and excellent conversation at the home of my cousins and said niece, and then took my son and his girlfriend out to dinner (thus managing to have dessert first and last, as well as having our cake and eating it, too).
A good time was had by all.
On a sadder note, another bright light and spirit has passed from this world. Dee Spresser - a wonderful lady and longtime friend of my mother's - died this weekend. Hers was a different cancer than mine, but it was just as deadly, and cruelly took our friend before her time. We will miss her kind heart, her dry wit, and her sharp bridge play.
I did manage to get to a local sheep & wool festival and even sold a wheel, along with several items from my friend's adjoining table. I was SO glad to have been able to attend, since that was seriously in question during the weeks previous, when I was very crippled up with pain in my hip. I not only got to spend the weekend with my lovable husband and my good friend Denise, but I also met several delightful past acquaintances and some lovely new-people-who-are-now-delightful-acquaintances.
I followed that up with the second week's infusion of this 3-week round of chemo. Plus I actually managed to get to both my acupuncture appointment and my healing-touch appointment, both very helpful.
On Sunday I got to go to my exceedingly bright and beautiful niece's high school production of 'Phantom of the Opera' - and yes, they did manage to do an excellent job of it, in spite of the Andrew Lloyd Webber score being extremely challenging for such young artists. Afterwards we had delicious cake and excellent conversation at the home of my cousins and said niece, and then took my son and his girlfriend out to dinner (thus managing to have dessert first and last, as well as having our cake and eating it, too).
A good time was had by all.
On a sadder note, another bright light and spirit has passed from this world. Dee Spresser - a wonderful lady and longtime friend of my mother's - died this weekend. Hers was a different cancer than mine, but it was just as deadly, and cruelly took our friend before her time. We will miss her kind heart, her dry wit, and her sharp bridge play.
5/6/11
More Info On Research and Metastatic Breast Cancer
A little while ago, I wrote about the woeful state of current research on metastatic breast cancer.
Well, now the fabulous Donna Peach has written a post that you might find of interest on the subject - she links to an excellent presentation by Musa Mayer on the urgent need for research in this area. Go there and check it out!
Well, now the fabulous Donna Peach has written a post that you might find of interest on the subject - she links to an excellent presentation by Musa Mayer on the urgent need for research in this area. Go there and check it out!
5/4/11
More Good News... Sort Of
The results of the x-ray are in and... um, not much, actually.
No breaks, no new fractures, no impending fractures evident. Could be a little bone spur irritating a nerve bundle, could be a cartilage issue, could be the tumor regressing is causing a bone 'toothache', could be a slight dislocation, could be a pinched nerve, could be just feeling the tumor after a period where the tumor wasn't bothering me.
In other words, who knows? And who knows if it will get better or not? Not us, and not the doctor.
The good news: no need for a rod for the moment. Yay!
The bad news: no particular way to help myself get less pain and more mobility. Just wait to see what happens, grit my teeth and bear it.
Ah, well, just one more of the joys of being Little Rose Cancer Hood!
No breaks, no new fractures, no impending fractures evident. Could be a little bone spur irritating a nerve bundle, could be a cartilage issue, could be the tumor regressing is causing a bone 'toothache', could be a slight dislocation, could be a pinched nerve, could be just feeling the tumor after a period where the tumor wasn't bothering me.
In other words, who knows? And who knows if it will get better or not? Not us, and not the doctor.
The good news: no need for a rod for the moment. Yay!
The bad news: no particular way to help myself get less pain and more mobility. Just wait to see what happens, grit my teeth and bear it.
Ah, well, just one more of the joys of being Little Rose Cancer Hood!
5/3/11
The Lowdown
So: bad news, bad news, related bad news, good news, good news.
1. Dr. Bouncy thinks the hip pain is probably from breaks in the hip and/or femur, and that I may need a rod put in. Goody, more difficult decisions and painful procedures that will rob me of my limited functional time. That's assuming the rod wouldn't just shatter the bone more and make things even more difficult, perhaps even end my life early. That is a BIG assumption.
2. Dr. Bouncy strongly believes that we should continue the more aggressive schedule of three weeks on and one week off for at least one more round. I am not happy about this, as I am still suffering from side effects despite my week off, and side effects are cumulative.
2a. Also my eyebrows and eyelashes have made a sudden dash for freedom. Turns out eyelashes are very useful and protective things, as well as being decorative. My eyes are very angry with me. I'm not too happy with them, either, so the feeling is mutual.
3. I feel a little bit better, in terms of the hip pain, than I felt yesterday. I felt a little bit better yesterday than I felt the days before. I am hoping that this is a trend, and that we can put off the whole rod idea for a while. Ugh. We await the x-ray results and the consultation with the Orthopod**.
4. The scan results are in, and although all the tumors are still there (my own not-so-little flock...), they are noticeably smaller and less active. Thus #2 on this particular Hit Parade. Dr. Bouncy wants to smack them hard while they are still vulnerable. Not in hopes of a cure, of course, but in hopes of getting them inactive enough that we can hold them off for a little while with something a bit less dire and Quality-of-Life-Destroying later on. It's been a long time since these puppies have come anywhere within screaming distance of going in the 'right' direction, so this is at least moderately encouraging news. The first moderately encouraging news we've had in a long, long time.
Given item #1, I feel like I've been slapped and then kissed - I'm not entirely certain how I feel about the whole thing.
**People who write to correct this lose 500 Humor Points and have to find all my kidnapped socks and match them to their grieving orphaned twins. Seriously, every time the laundry is done, I lose at least 8 socks. I'm going to be barefoot soon, and nobody wants to have to look at my naked feet, believe me!
1. Dr. Bouncy thinks the hip pain is probably from breaks in the hip and/or femur, and that I may need a rod put in. Goody, more difficult decisions and painful procedures that will rob me of my limited functional time. That's assuming the rod wouldn't just shatter the bone more and make things even more difficult, perhaps even end my life early. That is a BIG assumption.
2. Dr. Bouncy strongly believes that we should continue the more aggressive schedule of three weeks on and one week off for at least one more round. I am not happy about this, as I am still suffering from side effects despite my week off, and side effects are cumulative.
2a. Also my eyebrows and eyelashes have made a sudden dash for freedom. Turns out eyelashes are very useful and protective things, as well as being decorative. My eyes are very angry with me. I'm not too happy with them, either, so the feeling is mutual.
3. I feel a little bit better, in terms of the hip pain, than I felt yesterday. I felt a little bit better yesterday than I felt the days before. I am hoping that this is a trend, and that we can put off the whole rod idea for a while. Ugh. We await the x-ray results and the consultation with the Orthopod**.
4. The scan results are in, and although all the tumors are still there (my own not-so-little flock...), they are noticeably smaller and less active. Thus #2 on this particular Hit Parade. Dr. Bouncy wants to smack them hard while they are still vulnerable. Not in hopes of a cure, of course, but in hopes of getting them inactive enough that we can hold them off for a little while with something a bit less dire and Quality-of-Life-Destroying later on. It's been a long time since these puppies have come anywhere within screaming distance of going in the 'right' direction, so this is at least moderately encouraging news. The first moderately encouraging news we've had in a long, long time.
Given item #1, I feel like I've been slapped and then kissed - I'm not entirely certain how I feel about the whole thing.
**People who write to correct this lose 500 Humor Points and have to find all my kidnapped socks and match them to their grieving orphaned twins. Seriously, every time the laundry is done, I lose at least 8 socks. I'm going to be barefoot soon, and nobody wants to have to look at my naked feet, believe me!
5/2/11
Oh, Leave Me Alone...
A lovely social worker from a local home hospice organization came to talk to my folks and I today. We have another appointment with her and a nurse on Wednesday. I'll probably talk about these things in more depth later. But for now...
One of the many things I learned today was that generally as people get closer to dying, they tend to back away from the rest of the world, turning inwards to process their... well, their process. They often do this for two or three months before their actual death. They just sort of sense that things are going to change soon, and they go into preparation mode.
I believe that people can sense death drawing near. I've experienced it. My grandmother, who had always been resistant to making plans or having discussions about her own passing, suddenly chased me down her walkway when I was leaving and dragged me back into the house, insisting that I choose the thing I wanted to inherit when she died. I protested, since I was in a hurry and wasn't prepared at that time to think about such a thing. I said that I would think about it and let her know next time I visited. She continued to insist, and finally I chose something, gave her another hug, and ran to the car. I couldn't understand why it was suddenly so urgent an issue - she was healthy for a woman her age, there was no reason to think she wouldn't survive many more years.
That conversation was the last I had with her. She died of injuries from a car accident only a few weeks later.**
I realize that for the last bit, when I'm really heavily drugged up to relieve pain (or at least my expression of pain - boy, am I paranoid about drugs, or what?) I am pretty likely to mostly sleep or withdraw. I mean, I tend to withdraw when I'm in pain, so that's not a big surprise.
But the question is this: I spent much of my childhood, and my adulthood as well, backing away from the rest of the world. In some pretty significant ways, I've been more socially connected since my diagnosis - and my journey towards death - than I've probably been in my entire life. Heck, I've probably been more ME than I've been in my entire life, in many ways.
If you had asked me five or more years ago what I'd want at the end, I probably would have said, "I want to sit quietly somewhere and just be left alone to read and think and prepare myself."
Now? As I feel now, I want to be surrounded by my family and friends. I want my cousins to visit, I want my aunts and uncles to visit, I want my sibs-in-law and their families, I want my mother-in-law to visit.
They are wonderful, and I love them. I want to feel that love around me. Even if I'm not conscious, I want people to read to me and talk to me, I want to hear music and listen to my favorite podcasts.
I remember when my father-in-law was dying, the family all gathered around him and sat vigil. It was so wonderful, being able to share stories about him, all his dear and silly and funny and inspiring and frustrating history. It brought his spirit into the room with us, even though he was not awake to participate actively in the discussion. We laughed, we cried, we laughed again. We were able to share with him our love, we were able to forgive, we were able to say goodbye; and it was good, it was healing, it helped us share and bond with each other, it helped us start down the road to healing from our grief.
I want that. I want it for me, and I want it for my family and friends. I want it to comfort and surround my parents and my husband and my son in those last difficult days.
Will I still feel that way in the coming months? Well, I can't know for sure. But it's something to discuss with my family. And to keep thinking about.
Although perhaps I feel this way because I've done so much thinking and being on my own already. Perhaps at the end we take care of the parts of our lives that we've neglected.
It will be interesting to find out where I end up.
And then the really big adventure begins...
**Please don't think me neglectful of my beloved grandma; she lived a 4-hour drive away, and I had a young infant with special needs at that time. Rather, it was a sign of my affection for her that I was willing to voluntarily trek alone with said infant in order to see her. I adored my grandmother - everyone who knew her felt similarly. She was an amazing, extremely lovable person. I still miss her. If someone waits to meet us on the other side, hers is the face I want to see, and the arms I want to feel around me.
One of the many things I learned today was that generally as people get closer to dying, they tend to back away from the rest of the world, turning inwards to process their... well, their process. They often do this for two or three months before their actual death. They just sort of sense that things are going to change soon, and they go into preparation mode.
I believe that people can sense death drawing near. I've experienced it. My grandmother, who had always been resistant to making plans or having discussions about her own passing, suddenly chased me down her walkway when I was leaving and dragged me back into the house, insisting that I choose the thing I wanted to inherit when she died. I protested, since I was in a hurry and wasn't prepared at that time to think about such a thing. I said that I would think about it and let her know next time I visited. She continued to insist, and finally I chose something, gave her another hug, and ran to the car. I couldn't understand why it was suddenly so urgent an issue - she was healthy for a woman her age, there was no reason to think she wouldn't survive many more years.
That conversation was the last I had with her. She died of injuries from a car accident only a few weeks later.**
I realize that for the last bit, when I'm really heavily drugged up to relieve pain (or at least my expression of pain - boy, am I paranoid about drugs, or what?) I am pretty likely to mostly sleep or withdraw. I mean, I tend to withdraw when I'm in pain, so that's not a big surprise.
But the question is this: I spent much of my childhood, and my adulthood as well, backing away from the rest of the world. In some pretty significant ways, I've been more socially connected since my diagnosis - and my journey towards death - than I've probably been in my entire life. Heck, I've probably been more ME than I've been in my entire life, in many ways.
If you had asked me five or more years ago what I'd want at the end, I probably would have said, "I want to sit quietly somewhere and just be left alone to read and think and prepare myself."
Now? As I feel now, I want to be surrounded by my family and friends. I want my cousins to visit, I want my aunts and uncles to visit, I want my sibs-in-law and their families, I want my mother-in-law to visit.
They are wonderful, and I love them. I want to feel that love around me. Even if I'm not conscious, I want people to read to me and talk to me, I want to hear music and listen to my favorite podcasts.
I remember when my father-in-law was dying, the family all gathered around him and sat vigil. It was so wonderful, being able to share stories about him, all his dear and silly and funny and inspiring and frustrating history. It brought his spirit into the room with us, even though he was not awake to participate actively in the discussion. We laughed, we cried, we laughed again. We were able to share with him our love, we were able to forgive, we were able to say goodbye; and it was good, it was healing, it helped us share and bond with each other, it helped us start down the road to healing from our grief.
I want that. I want it for me, and I want it for my family and friends. I want it to comfort and surround my parents and my husband and my son in those last difficult days.
Will I still feel that way in the coming months? Well, I can't know for sure. But it's something to discuss with my family. And to keep thinking about.
Although perhaps I feel this way because I've done so much thinking and being on my own already. Perhaps at the end we take care of the parts of our lives that we've neglected.
It will be interesting to find out where I end up.
And then the really big adventure begins...
**Please don't think me neglectful of my beloved grandma; she lived a 4-hour drive away, and I had a young infant with special needs at that time. Rather, it was a sign of my affection for her that I was willing to voluntarily trek alone with said infant in order to see her. I adored my grandmother - everyone who knew her felt similarly. She was an amazing, extremely lovable person. I still miss her. If someone waits to meet us on the other side, hers is the face I want to see, and the arms I want to feel around me.
Subscribe to:
Posts (Atom)