I have blogged about this before. If you could do a genetic test to find out if you are likely to get an ailment and die of it, would you want to know?
I am still up in the air on this one. I was interested to read about a 21 year old woman who has the BRCA 1 gene, watched her mother die of cancer, but has decided she doesn't want to know. Her choice is to live an unstressed like without the burden of the knowledge that she could die of cancer and what it would be like.
I can completely understand that point of view. Just because we can learn about our medical and genetic make up, do we have to learn it? I mean is there a benefit to living in ignorance and letting life happen around us with out having to learn what might or might not happen to us?
Why are we supposed to learn to see what the future brings? I have never been to a palm reading or a fortune teller or anything. I haven't really wanted to. Isn't it better to have life unfold as it may than to plan and learn and change ourselves to compensate for what we learn?
Hindsight in light is always 20/20 - we always look back and think back how we could have done better or differently or improved the outcome. But is it really to our benefit to think how we might have done things differently? Then we spend too much time ruing our decisions.
This would complicate my life immensely. If I knew then I would have too much time to over plan my life which would cause me to spend time ruing my decisions and over thinking everything.
I don't want to know.
Good bye 2012, Hello 2013 health care-wise
So if you read CNN, which I do. I find it much easier than watching CNN - either HLN screaming about new 'factoids' and miracles, or regular CNN going on and on and on about something boring and political that will put me to sleep before I learn anything. I prefer my news in the low brow way - tell it like it is and keep it short. This is why I like CNN online - because I can skip through articles instead of listening to people S L O W L Y reading them. I don't have a lot of time in my life to waste on the news. I have better things to do - like have fun.
I have digressed. CNN put out their list of the top health news stories of 2012 - which I found to be exceptionally lame as several of them focus on individual people. Here's the list:
But here is the list for 2013 of things to look out for:
I have digressed. CNN put out their list of the top health news stories of 2012 - which I found to be exceptionally lame as several of them focus on individual people. Here's the list:
- Supreme Court upheld the Affordable Care Act.
- Woman from Georgia and her case of flesh eating bacteria
- Meningitis from steroid injections that killed 39
- The Record West Nile Virus outbreak
- Robin Roberts bone marrow transplant
- Hantavirus at Yosemite
- Jesse Jackson and bi-polar disorders
- Spike in autism cases
- Kathy Bates double mastectomy
- Hepatitis C from the traveling hospital worker
But here is the list for 2013 of things to look out for:
- Medicaid expansion
- Medicaid provider payments will go up so more providers will take medicaid patients
- Health insurance exchanges
- Medicaid taxes are going up for those making over $250,000
- Medicare reform
- Insurance transparency - health insurance policies will need to be understandable
- Health care spending will be a big issue
Recent blog posts suck
Okay, I admit my recent blog posts suck. I have been busy. I have been sleeping. I have been working. We have house guests. Its the holidays. But my blog posts have sucked for longer than just this past week or so. I am not as inspired or as inspiring I guess.
The main reason for not having as much to say is because my cancer stuff seems to be falling more in the background. Which is a good thing. But its not that it has fallen in the background but that my other health issues are overtaking the cancer crap. Currently. I am sure my cancer crap will return to the forefront and upcoming doctor appointments. In some ways its nice to have multiple medical ailments because I can alternate my stress.
My recent doctor appointments have all been about my back and RA and fibro. But I have upcoming appointments in the next month or so on my back and RA and fibro where I can discuss how treatment is going and what are we going to do to change it, and alternatives, and all sorts of fun things.
But I also have upcoming appointments in the next month or so with oncologists and endocrinologists (with thyroid cancer you get an endo instead of an onc most of the time). These conversations will be cancer related so I'll be able to stress about cancer again.
I need some time to find our more about some research which is new and exciting but the news these days is all about the stupid politican's cliff.
I digress. My recent blog posts suck. I will work on them and attempt to be inspired more in the future.
The main reason for not having as much to say is because my cancer stuff seems to be falling more in the background. Which is a good thing. But its not that it has fallen in the background but that my other health issues are overtaking the cancer crap. Currently. I am sure my cancer crap will return to the forefront and upcoming doctor appointments. In some ways its nice to have multiple medical ailments because I can alternate my stress.
My recent doctor appointments have all been about my back and RA and fibro. But I have upcoming appointments in the next month or so on my back and RA and fibro where I can discuss how treatment is going and what are we going to do to change it, and alternatives, and all sorts of fun things.
But I also have upcoming appointments in the next month or so with oncologists and endocrinologists (with thyroid cancer you get an endo instead of an onc most of the time). These conversations will be cancer related so I'll be able to stress about cancer again.
I need some time to find our more about some research which is new and exciting but the news these days is all about the stupid politican's cliff.
I digress. My recent blog posts suck. I will work on them and attempt to be inspired more in the future.
My daily nap
I have never been one for taking naps. I mean probably since I turned 3 I haven't been much of a napper. There was one semester in college where I found a daily nap meant I could stay out late at the campus bar, make it to my early classes at the same time, and keep my grades up. But I was also young then. During chemo, I did become a fan of napping for a while but then I got past that. And those naps were chemically induced shall we say.
Now I have again learned about the benefits of my daily nap. When possible I seem to fit in a daily nap of 2 hours or so if I can. Even if I go to bed early I still need my daily nap.
This is a side benefit of rheumatoid and fibromyalgia. I call it a benefit because my cat appreciates the daily nap as well.
There are people who do not understand my need for sleep and rest these days. Its not going to change anytime soon. Nor is it possible to work up to staying up and not requiring sleep. Evening events are tough for me, not that I have ever been much of a night owl but now you can pretend I'm either 2 and need a daily nap or 90 and need a daily nap.
For now, I need my sleep. There is hope I will get past this at some point but I'm not so sure.
Now I have again learned about the benefits of my daily nap. When possible I seem to fit in a daily nap of 2 hours or so if I can. Even if I go to bed early I still need my daily nap.
This is a side benefit of rheumatoid and fibromyalgia. I call it a benefit because my cat appreciates the daily nap as well.
There are people who do not understand my need for sleep and rest these days. Its not going to change anytime soon. Nor is it possible to work up to staying up and not requiring sleep. Evening events are tough for me, not that I have ever been much of a night owl but now you can pretend I'm either 2 and need a daily nap or 90 and need a daily nap.
For now, I need my sleep. There is hope I will get past this at some point but I'm not so sure.
My goals
Now these are not by any stretch New Year's Resolutions - that isn't until next week so I have lots of time left to procrastinate on them. These are goals of things I want to do. I mean besides win the lottery or find the cure for cancer and stuff like that. These are just some basic goals.
I have been reading other people's blogs for as long as I have been blogging. Most of them are written by other cancer people. I also hang out online with all sorts of healthy and unhealthy people. I have learned a lot about how people regard life with their ailments. I know what I think but sometimes I am a slacker.
Okay, here they are:
I have been reading other people's blogs for as long as I have been blogging. Most of them are written by other cancer people. I also hang out online with all sorts of healthy and unhealthy people. I have learned a lot about how people regard life with their ailments. I know what I think but sometimes I am a slacker.
Okay, here they are:
- I will not succumb to the 'woe is me' attitude. So I had cancer twice now (and am still here) but it is not a case of woe is me. I will prevail.
- Cancer is not going to kill me anytime soon. I don't care what stage you are, your cancer is not necessarily what is going to kill you. You could get hit by a bus tomorrow just like anyone else. If you are Stage IV, it is still true for you - a bus could come your way. So why live like cancer is what is going to do you in? And with treatment these days, there are people living out there for decades with metastases. So my goal is to live as long as possible.
- There is a lot more to life than my list of ailments and boxes of pills and doctor appointments. I can't do some of the things I used to be able to do - like skiing off the top of the headwall into a big bowl of powder snow, or climb big mountains, or whatever. But I still can do a lot of things and have fun doing it.
Go P53! Rah Team P53!
[But before I begin this morning you will note the little new badge to the right-->
where you can vote for my blog for one of the best breast cancer blogs of 2012. Click on the little link and then find my blog and vote for it. When I last checked it was on the top of page 6 when sorted alphabetically. I have no votes yet so I'm feeling a little lonely - but it only started yesterday.]
Anyhow we are on Team P53 now. Here's a bit of an explanation of who P53 is and why we want to be on their team:
"Normal healthy cells have a mechanism that tells them to die if their DNA is too badly damaged to repair. Cancer cells have grotesquely damaged DNA, so ordinarily they would self-destruct. A protein known as p53 that Dr. Gary Gilliland of Merck calls the cell’s angel of death normally sets things in motion. But cancer cells disable p53, either directly, with a mutation, or indirectly, by attaching the p53 protein to another cellular protein that blocks it. The dream of cancer researchers has long been to reanimate p53 in cancer cells so they will die on their own."
P53 has been known about for about 20 years. It was Science Magazine's (don't laugh) Molecule of the Year in 1993 and even had the cover for a month. (Really! So its already cool so we want to be on its team.)
It was also called, in an editorial, “a cure of a terrible killer in the not too distant future.” So even its hero status has been known for a long time. This is the Joe Namath-Bobby Orr-Yogi Berra-Neil Armstrong-Nelson Mandela-Mick Jagger-Winston Churchill-Dr Salk-Mother Theresa MVP of the year protein. We want to be on the team P53.
Right now there are three drug companies - Merck, Sanofi, and Roche - about to begin testing a new drug each that will work on a wide variety of cancers - breast, lung, prostate, and liver - that will work with P53 to help reanimate it so the cancer cells die off.
"Great uncertainties remain, but such drugs could mean new treatments for rare, neglected cancers, as well as common ones. Merck, Roche and Sanofi are racing to develop their own versions of a drug they hope will restore a mechanism that normally makes badly damaged cells self-destruct and could potentially be used against half of all cancers"
So the thought is that in the future, the organ where the cancer is based will become less important than its molecular make up.
This will have a very significant impact on a range of issues related to cancer. One result, the philanthropy and awareness efforts surrounding different types of cancer will shift their goal and pool their resources. Groups that now focus on a single type of cancer, such as the Komen-for-a-Cure pink cult will become a way of the past (and we never thought we could get rid of them) as research is pooled and focus on the genes and molecular impact. So team P53 will not even have pink cheerleaders.
I'm all for Team P53 here. Please join me.
You can read the full article here.
where you can vote for my blog for one of the best breast cancer blogs of 2012. Click on the little link and then find my blog and vote for it. When I last checked it was on the top of page 6 when sorted alphabetically. I have no votes yet so I'm feeling a little lonely - but it only started yesterday.]
Anyhow we are on Team P53 now. Here's a bit of an explanation of who P53 is and why we want to be on their team:
"Normal healthy cells have a mechanism that tells them to die if their DNA is too badly damaged to repair. Cancer cells have grotesquely damaged DNA, so ordinarily they would self-destruct. A protein known as p53 that Dr. Gary Gilliland of Merck calls the cell’s angel of death normally sets things in motion. But cancer cells disable p53, either directly, with a mutation, or indirectly, by attaching the p53 protein to another cellular protein that blocks it. The dream of cancer researchers has long been to reanimate p53 in cancer cells so they will die on their own."
P53 has been known about for about 20 years. It was Science Magazine's (don't laugh) Molecule of the Year in 1993 and even had the cover for a month. (Really! So its already cool so we want to be on its team.)
It was also called, in an editorial, “a cure of a terrible killer in the not too distant future.” So even its hero status has been known for a long time. This is the Joe Namath-Bobby Orr-Yogi Berra-Neil Armstrong-Nelson Mandela-Mick Jagger-Winston Churchill-Dr Salk-Mother Theresa MVP of the year protein. We want to be on the team P53.
Right now there are three drug companies - Merck, Sanofi, and Roche - about to begin testing a new drug each that will work on a wide variety of cancers - breast, lung, prostate, and liver - that will work with P53 to help reanimate it so the cancer cells die off.
"Great uncertainties remain, but such drugs could mean new treatments for rare, neglected cancers, as well as common ones. Merck, Roche and Sanofi are racing to develop their own versions of a drug they hope will restore a mechanism that normally makes badly damaged cells self-destruct and could potentially be used against half of all cancers"
So the thought is that in the future, the organ where the cancer is based will become less important than its molecular make up.
This will have a very significant impact on a range of issues related to cancer. One result, the philanthropy and awareness efforts surrounding different types of cancer will shift their goal and pool their resources. Groups that now focus on a single type of cancer, such as the Komen-for-a-Cure pink cult will become a way of the past (and we never thought we could get rid of them) as research is pooled and focus on the genes and molecular impact. So team P53 will not even have pink cheerleaders.
I'm all for Team P53 here. Please join me.
You can read the full article here.
Happy Holidays
Merry Christmas, Happy New Year, Happy Kwanzaa, Happy Festivus, Happy Hanukkah and whatever your holiday to you. Some wishes are a few days early, some a few days late, and some on time but you get the point. Go celebrate, enjoy food, family, and friends.
We are having a low key celebration our selves. Well several celebrations over the next few days. Lots of entertainment means lots of fun but lots of tired me, who might get cranky and live on pain meds. But we even have some lightly falling snow outside the window to admire.
But I will have fun. I will pretend I am on a mini medical vacation. I don't have any doctor appointments for another ten days. I will attempt to pretend I am healthy and enjoy the season. But I will still blog, cynically as usually.
Happy Holidays!
We are having a low key celebration our selves. Well several celebrations over the next few days. Lots of entertainment means lots of fun but lots of tired me, who might get cranky and live on pain meds. But we even have some lightly falling snow outside the window to admire.
But I will have fun. I will pretend I am on a mini medical vacation. I don't have any doctor appointments for another ten days. I will attempt to pretend I am healthy and enjoy the season. But I will still blog, cynically as usually.
Happy Holidays!
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