Today is the end of Pinktober. I will celebrate Halloween. I have candy hidden for the trick or treaters. I might wear my feather boa when I answer the door (that's the only costume I came up with this year - it will go nicely with my Sunday evening at home sweatshirt & jeans). I will also remember those who did not make it.
But I will also celebrate the end of Pinktober. As this opinion notes, there is a strong disconnect between the pink products and the pink cause. Neither of which we really need. We do need more cancer research. Skip spending money on pink products and send in your checks to cancer research.
If you buy pink encased lipstick celebrating Pinktober, did you know that lipstick could very easily contain chemicals which are known carcinogens? Or all those plastic thingies are made out of petrochemicals which are also known carcinogens? Think before you pink.
As you know I do not consider myself a cancer survivor but I do consider myself a Pinktober survivor. For that I need a t-shirt.
Sunday, October 31, 2010
Saturday, October 30, 2010
Gimme that shot please!
I go to the back doctor on Tuesday to discuss how my new back meds are working and what are the next steps which are sure to involve more needles. A few years ago I would never have asked for a needle. I still can't look at them. But I am becoming an avid fan of needles full of cortisone for my back pain. They have proved very helpful.
But of course, just as I am starting to appreciate them, there is a new study which doubts their efficacy. (Damn these medical studies.) I think (as my little chemo brain dissects the article) that the problem is people come in with tennis elbow and other injury/overuse type issues and get a cortisone shot. Yes they get instant relief but then they also are prone to reinjury. This is opposed to waiting and taking it easy for 6 to 12 months. Well this makes sense.
If you are forced to change the way you do things to let something heal, you are reducing the risk of reinjury because it gets time to heal and you are changing your habits. If you just get a shot and it feels better, and you are not forced to modify your habits and take it easy, it would seem logical that you would repeat whatever you did and reinjure yourself.
But with my back I think its different (they could not be talking about me in that article) because my back is just piling on the pain and we are trying to ease the pain in specific areas so I can do things like sit, stand, walk, or lie down or reach for things or roll over in bed or cook dinner or bend down to feed the cat etc.
Needless to say, I will go talk to my doctor about more needles that I don't have to look at because he puts them in my back where I can't see.
But of course, just as I am starting to appreciate them, there is a new study which doubts their efficacy. (Damn these medical studies.) I think (as my little chemo brain dissects the article) that the problem is people come in with tennis elbow and other injury/overuse type issues and get a cortisone shot. Yes they get instant relief but then they also are prone to reinjury. This is opposed to waiting and taking it easy for 6 to 12 months. Well this makes sense.
If you are forced to change the way you do things to let something heal, you are reducing the risk of reinjury because it gets time to heal and you are changing your habits. If you just get a shot and it feels better, and you are not forced to modify your habits and take it easy, it would seem logical that you would repeat whatever you did and reinjure yourself.
But with my back I think its different (they could not be talking about me in that article) because my back is just piling on the pain and we are trying to ease the pain in specific areas so I can do things like sit, stand, walk, or lie down or reach for things or roll over in bed or cook dinner or bend down to feed the cat etc.
Needless to say, I will go talk to my doctor about more needles that I don't have to look at because he puts them in my back where I can't see.
Friday, October 29, 2010
The ultimate recycling
So what are you going to do when you die? No I am not morbid, I am practical. I can't decide. Probably cremation but then what. For the cat, it is definitely cremation and then a little plot in the back yard somewhere. There is not much of a choice. I have friends who keep their pet's ashes in the closet. But for people it is a little more complicated.
Apparently there are some choices. Its the ultimate recycling instead of just decomposing in the ground. But there are also green burials where they skip the nasty embalming chemicals and use a basket instead of a casket.
Here is a list to choose from.
1. Donate your organs - well that's easy. I can do that one. I can relate.
2. Donate your tissue - that's also easy. Could I do 1 & 2?
3. Will your body to a university - so some future doctor can dissect me? I think not. Yuck!
4. Help doctors practice their skills - Ew again. No. No extra incisions.
5. Leave your body to "the body farm" - this is where they figure out how long it takes maggots to show up on a dead body. No. No. No. No bugs in me.
6. Become a crash test cadaver - No again. I don't need a car accident - even after I am gone.
7. Give your body to a broker - who will sell your parts for science, research and training. Um, no again.
8. Send your body on tour - with those Body Worlds. No. My flabbiness will not be exposed in plastic for eternity.
9. Become a skeleton - for a school or some place where students will pose you in weird positions as part of a prank or you get hidden in closets to fall out on people. Dont think so!
10. Be on display at a museum - A special museum at the College of Physicians. No, see flabbiness note above.
Hmmm... I'm thinking donate tissue and organs and then cremation. That I can do. But would my estate get a tax credit for the donations after I'm gone? I'll go ask my accountant that one.
Apparently there are some choices. Its the ultimate recycling instead of just decomposing in the ground. But there are also green burials where they skip the nasty embalming chemicals and use a basket instead of a casket.
Here is a list to choose from.
1. Donate your organs - well that's easy. I can do that one. I can relate.
2. Donate your tissue - that's also easy. Could I do 1 & 2?
3. Will your body to a university - so some future doctor can dissect me? I think not. Yuck!
4. Help doctors practice their skills - Ew again. No. No extra incisions.
5. Leave your body to "the body farm" - this is where they figure out how long it takes maggots to show up on a dead body. No. No. No. No bugs in me.
6. Become a crash test cadaver - No again. I don't need a car accident - even after I am gone.
7. Give your body to a broker - who will sell your parts for science, research and training. Um, no again.
8. Send your body on tour - with those Body Worlds. No. My flabbiness will not be exposed in plastic for eternity.
9. Become a skeleton - for a school or some place where students will pose you in weird positions as part of a prank or you get hidden in closets to fall out on people. Dont think so!
10. Be on display at a museum - A special museum at the College of Physicians. No, see flabbiness note above.
Hmmm... I'm thinking donate tissue and organs and then cremation. That I can do. But would my estate get a tax credit for the donations after I'm gone? I'll go ask my accountant that one.
Thursday, October 28, 2010
Sometimes I need to ignore what they say
Next Tuesday I have an appointment with my pain doctor. I have been hoping he will deem me okay for another cortisone injection in my left hip - so I can walk with less pain. I have already had numerous injections in different areas. Sometimes just one injection works but other times it takes 2 or 3 in a specific area. If they don't work, we get to move on to the wonderful radiofrequency denervation which is NOT fun but is supposed to kill nerves. I have mixed feelings on this so far but I like the cortisone injections. They have done well for me so far.
Then they come up with the theory that cortisone injections aren't as good as they thought they were - they have only been used since the 1940's so you think they would have had long enough to figure this out so far.
I was concerned when I read the article headline that they might make things worse, not better. Then I decided that this is not meant for people like me - they are referring to injury caused inflammation like tennis elbow where the injury will heal up if left to itself. My case is different. My pain causes are not injuries that might heal. They are unhappy nerves being squished some place along the way because the degenerating disks in my spine are no longer holding up their share causing squishing of nerves (another technical term). So obviously they aren't talking about me so I will happily go beg for an injection next week.
Three additional comments on my back pain: With each treatment, they are hoping to resolve the pain in that area for at least a year so they don't have to go back and treat it again. Sometimes it takes two or three treatments to get it to a level where it is stable for a year or more.
Also, when each area is treated, they need to wait six weeks to see the result and let the area recover from the injection and see if it has the expected result or needs additional treatment.
Finally, as each area is treated, more areas of pain seem to surface. So I am supplying a never ending source of pain to be treated. How lovely.
Now gimme the damn shot!
Then they come up with the theory that cortisone injections aren't as good as they thought they were - they have only been used since the 1940's so you think they would have had long enough to figure this out so far.
I was concerned when I read the article headline that they might make things worse, not better. Then I decided that this is not meant for people like me - they are referring to injury caused inflammation like tennis elbow where the injury will heal up if left to itself. My case is different. My pain causes are not injuries that might heal. They are unhappy nerves being squished some place along the way because the degenerating disks in my spine are no longer holding up their share causing squishing of nerves (another technical term). So obviously they aren't talking about me so I will happily go beg for an injection next week.
Three additional comments on my back pain: With each treatment, they are hoping to resolve the pain in that area for at least a year so they don't have to go back and treat it again. Sometimes it takes two or three treatments to get it to a level where it is stable for a year or more.
Also, when each area is treated, they need to wait six weeks to see the result and let the area recover from the injection and see if it has the expected result or needs additional treatment.
Finally, as each area is treated, more areas of pain seem to surface. So I am supplying a never ending source of pain to be treated. How lovely.
Now gimme the damn shot!
Wednesday, October 27, 2010
Rememberance
Pinktober is (finally) winding down. I survived and did not buy anything pink but I did get Halloween candy (which is hidden to ensure its survival until Sunday). But there is something more we can do in October. If you haven't, I suggest you donate to breast cancer research, not awareness. Don't buy something pink with a portion going to breast cancer research but send something directly to the Breast Cancer Research Foundation (www.bcrf.org) or go to breast-cancer-research.com and find another research based charity to donate.
In addition, this was sent to me by a friend who got it from a friend who got it off a message board somewhere. Make Sunday October 31, your day of remembrance as well.
Breast Cancer Awareness Month is winding down. I'm relieved it's over with and glad that I succeeded in some small way of creating more awareness for metastatic breast cancer. I will start earlier next year and build on what I've learned.
But I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers.
I will wear black, not for its funeral implications but for its simple dignity, a quality that has been sadly lacking these past 30 pink saturated days.
At 8:45 that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.
My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.
Time slows down as you approach the speed of light.
I'll think of those whose time was all too brief and I'll hope for brighter days ahead.
In addition, this was sent to me by a friend who got it from a friend who got it off a message board somewhere. Make Sunday October 31, your day of remembrance as well.
Breast Cancer Awareness Month is winding down. I'm relieved it's over with and glad that I succeeded in some small way of creating more awareness for metastatic breast cancer. I will start earlier next year and build on what I've learned.
But I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers.
I will wear black, not for its funeral implications but for its simple dignity, a quality that has been sadly lacking these past 30 pink saturated days.
At 8:45 that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.
My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.
Time slows down as you approach the speed of light.
I'll think of those whose time was all too brief and I'll hope for brighter days ahead.
Tuesday, October 26, 2010
Oh, hi, I have cancer!
And then the thud as the elephant steps into the room. And the stretch of silence expands and you nervously giggle and the other person slowly backs away and looks around for someone else to talk to. Cancer is the ultimate conversation killer.
After a cancer or any other nasty diagnosis, how do you tell people you meet about your medical issues? The people who are with you on the medical roller coaster know everything. But then you meet new people, do you tell or don't you? New co-workers, new jobs, its none of their business. But new friends, new love interests, do you tell or don't you? When do you tell them? HOW do you tell them?
Depending on what kind of medical ailment you have and the maturity of the person you are talking to, you will probably hit a range of responses:
- Oh, can you excuse me a minute? I need to use the rest room/talk to someone across the room/go get a new drink. I'll be right back. (Yeah, sure, see you in the next century.)
- Oh, that's no big deal. My uncle's neighbor's hair dresser's dog walker's cousin had something like that 30 years ago and I hear they are still fine. I heard they had some kind of experimental treatment in Abu Dhabi and it cured them. (Gee thanks. I'll go get my passport to see if they can help me too.)
- Well, that's a bummer. How are you doing these days? Do you want to talk about it? (A human being! Cool.)
What if its just someone over the years who you have gotten to be good friends with. You met them after the medical disaster and they have turned into your best friend.
Or let's make it a little more complicated. You meet someone you REALLY like. You know the one you want to spend the rest of your life with and somewhere between the first date and the 'I do's' you need to figure a way to slip this little factoid in.
Since I have run into these dilemmas myself, in my experience I have learned:
- Tell them at a time when you are sitting around talking in a quiet place where you can talk. Not in a loud bar screaming over the music.
- Be open and honest and tell them why you didn't tell them before. If you were co-workers, maybe its not something you run around the office announcing. Or if its only something you tell the people that are closest to you.
- Be prepared for them to say they can't deal with it or just ignore the medical elephant in the room and ask if you are ready to order dinner. That tells you that they weren't worth the effort.
Its unfortunate that some people either just can't deal with your medical issues or prefer to ignore it and pretend it didn't happen. They aren't your friends if they can't accept you for what you are.
After a cancer or any other nasty diagnosis, how do you tell people you meet about your medical issues? The people who are with you on the medical roller coaster know everything. But then you meet new people, do you tell or don't you? New co-workers, new jobs, its none of their business. But new friends, new love interests, do you tell or don't you? When do you tell them? HOW do you tell them?
Depending on what kind of medical ailment you have and the maturity of the person you are talking to, you will probably hit a range of responses:
- Oh, can you excuse me a minute? I need to use the rest room/talk to someone across the room/go get a new drink. I'll be right back. (Yeah, sure, see you in the next century.)
- Oh, that's no big deal. My uncle's neighbor's hair dresser's dog walker's cousin had something like that 30 years ago and I hear they are still fine. I heard they had some kind of experimental treatment in Abu Dhabi and it cured them. (Gee thanks. I'll go get my passport to see if they can help me too.)
- Well, that's a bummer. How are you doing these days? Do you want to talk about it? (A human being! Cool.)
What if its just someone over the years who you have gotten to be good friends with. You met them after the medical disaster and they have turned into your best friend.
Or let's make it a little more complicated. You meet someone you REALLY like. You know the one you want to spend the rest of your life with and somewhere between the first date and the 'I do's' you need to figure a way to slip this little factoid in.
Since I have run into these dilemmas myself, in my experience I have learned:
- Tell them at a time when you are sitting around talking in a quiet place where you can talk. Not in a loud bar screaming over the music.
- Be open and honest and tell them why you didn't tell them before. If you were co-workers, maybe its not something you run around the office announcing. Or if its only something you tell the people that are closest to you.
- Be prepared for them to say they can't deal with it or just ignore the medical elephant in the room and ask if you are ready to order dinner. That tells you that they weren't worth the effort.
Its unfortunate that some people either just can't deal with your medical issues or prefer to ignore it and pretend it didn't happen. They aren't your friends if they can't accept you for what you are.
Monday, October 25, 2010
Radiation anyone?
In treatment for thyroid cancer, patients are often given a dose of radioactive iodine which will dissolve any thyroid cancer cells. But as you swallow radiation, it is then released from your body in its normal processes - sweat, saliva, urine - over the next few days. Now a days, patients are released from the hospital the same day and told to stay away from pregnant women and small children, sleep alone, and not share food or drink for a few days. Apparently before 1997 the NRC mandated hospital stays during radiation decay.
I don't remember this part. I don't recall being hospitalized for radiation. I think I was given radioactive iodine and sent home. My brain is a sieve but you would think I would remember that.
But the problem now a days, is patients who don't live near their hospital/place of treatment are then spending the night in a hotel while emitting radiation. Who knows who is going to stay in that bed next and get exposed to radiation? Who is going to clean the room and get exposed to radiation? (Between bed bug scares - which make my skin crawl - and things like potential radiation exposure that make me want to avoid hotels for ever.)
I don't think of radiation as being this really scary thing. I worked for a scientific instrumentation company which had many machines that use radiation as well as manufacturing systems for measuring different kinds of radiation. Any radioactive element has a half life which is how long it takes to decay. Some have a half life of 3 days and some of 3 million years. So somethings that were radioactive are no longer. I believe (in my non scientific brain and through reading posts like this read all the way down to the last one)that RAI is radioactive for a few weeks but you can expel it from your body sooner through its natural processes.
But it is a conundrum - if you get a treatment involving radiation, when can/should you be released into the general public? Are insurance companies again making unsafe decisions?
I don't remember this part. I don't recall being hospitalized for radiation. I think I was given radioactive iodine and sent home. My brain is a sieve but you would think I would remember that.
But the problem now a days, is patients who don't live near their hospital/place of treatment are then spending the night in a hotel while emitting radiation. Who knows who is going to stay in that bed next and get exposed to radiation? Who is going to clean the room and get exposed to radiation? (Between bed bug scares - which make my skin crawl - and things like potential radiation exposure that make me want to avoid hotels for ever.)
I don't think of radiation as being this really scary thing. I worked for a scientific instrumentation company which had many machines that use radiation as well as manufacturing systems for measuring different kinds of radiation. Any radioactive element has a half life which is how long it takes to decay. Some have a half life of 3 days and some of 3 million years. So somethings that were radioactive are no longer. I believe (in my non scientific brain and through reading posts like this read all the way down to the last one)that RAI is radioactive for a few weeks but you can expel it from your body sooner through its natural processes.
But it is a conundrum - if you get a treatment involving radiation, when can/should you be released into the general public? Are insurance companies again making unsafe decisions?
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