This article reminds me of the bias that exists with a disease diagnosis. How often do we hear 'Did you hear Susie's brother has cancer?' 'How sad. He was such a nice man.' Instantly a diagnosis becomes a mental death. The patient is written off and sent to some other world. When their death finally occurs, whether in one year or fifty years, you hear 'he was such a fighter, he struggled so long and hard'. But I don't think these people actually knew the patient and what he went through as they wrote him off at the diagnosis.
Leper colonies were the previous centuries way of creating bias and discrimination against those with a disease that was understood and feared. Now we don't physically put people in hidden colonies as much. (I believe still in parts of Asia those with an HIV diagnosis are sent to secret villages.) But we still mentally write people off when we hear such a bad thing. No they didn't move to Australia, they still live down the street and go to the doctor a lot.
So I am very happy to see the kind of support people who get it do know. I 'know' Michelle from her blog which was recently renamed 'Mission Remission'. She is a young mother who was diagnosed with colon cancer in 2008 and now is going through a recurrence. She has amazing support. In addition to her blog she has a fan page on Facebook with hundreds of supporters who help her with donations to help her and her family and support her through this latest cancer adventure. This is a good story.
However, then I read the story of an Iranian woman who is trying to get permanent residency in Canada. She has been there on a student visa since 2005 and trying to get the residency visa. However, since her application she has been diagnosed with breast cancer. So now the concern is that a return of her breast cancer would cause a strain on the health care system. (First of all who knew that you need a medical exam to get permanent residency in Canada - how's that for discrimination?) You can't live there if you are sick and might strain the health care system. This woman is a victim of circumstance. I am sure this would not be an issue if she did not have a breast cancer diagnosis.
Phooey to the Canadian government on this one. This is bias. Along with a bit of stupidity as well. One case of breast cancer is not going to destroy the Canadian health care system and if it is, then the healthcare system is in very poor condition. And its not like its contagious and going to infect millions of others.
Face it, in our life times, everyone will get there share of medical issues. There are some luckier than others who may not need as much care as the rest of us. Then there are people like me who get more than their share of medical care. There is no way of knowing who will get what and when. So why do we have people who create and allow such bias and stick cancer people in our modern 'leper colonies'?
Social media for patients
What was I thinking? I volunteered. My husband said volunteer is a synonym for sucker, which sometimes I believe. But I make him volunteer at things anyway. At one organization he is known as the man who 'picks things up and puts them down'.
Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).
As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.
But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.
If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.
Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.
Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?
Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).
As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.
But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.
If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.
Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.
Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?
Cancer myths
There are more myths about breast cancer and all other cancers. You know the ones - you can get breast cancer from wearing deodorant, underwire bras, living near power lines, blah, blah, blah. If anyone tells you they know how you got your cancer, just like if they tell you their 'cure' for cancer, they are full of you know what. And you can tell them (as politely as you want) to go take a hike.
One myth I think is overwhelmingly stupid. 1 in 8 is not your chance of getting breast cancer in your lifetime. 1 in 8 is the chance you will get breast cancer when you are 85. The stupidity that allows this one never ceases to amaze me. If anyone says it, I would reply 'liar, liar, pants on fire'.
But there is one myth that is still a myth unfortunately. That is that breast cancer is preventable.
'Alas, no. Although it is possible to identify risk factors (such as family history and inherited gene mutations) and make lifestyle changes that can lower your risk (reducing or eliminating alcohol consumption, losing weight, getting regular exercise and screenings, and quitting smoking), roughly 70% of women diagnosed with breast cancer have no identifiable risk factors, meaning that the disease occurs largely by chance and according to as-yet-unexplained factors.'
You can try as much as you might but you can not eliminate the risk of breast or any other cancer in your life. This is the one myth I would like to see proven.
One myth I think is overwhelmingly stupid. 1 in 8 is not your chance of getting breast cancer in your lifetime. 1 in 8 is the chance you will get breast cancer when you are 85. The stupidity that allows this one never ceases to amaze me. If anyone says it, I would reply 'liar, liar, pants on fire'.
But there is one myth that is still a myth unfortunately. That is that breast cancer is preventable.
'Alas, no. Although it is possible to identify risk factors (such as family history and inherited gene mutations) and make lifestyle changes that can lower your risk (reducing or eliminating alcohol consumption, losing weight, getting regular exercise and screenings, and quitting smoking), roughly 70% of women diagnosed with breast cancer have no identifiable risk factors, meaning that the disease occurs largely by chance and according to as-yet-unexplained factors.'
You can try as much as you might but you can not eliminate the risk of breast or any other cancer in your life. This is the one myth I would like to see proven.
Rethinking pink
The Komen hoopla over Planned Parenthood funding managed to put breast cancer spending under a microscope. There is a known benefit to having mammograms but more money needs to go to research which will ultimately save more lives. Mammograms only find the cancer but if you can't cure it, what's the point of the screening? Okay, that's a little harsh but I think its true.
Breast cancer charities abound. Its one of the most common cancers and that means there are lots of voices to lead the rallying cry. But what if the money spent on pink things, went to research instead of to making things pink? Who really gets the pinked money anyway?
I detest the pinkification of breast cancer. Making it pink, does not make it go away, kill fewer, or cure anyone. We have plenty of pinkification these days, primarily thanks to the Komen Foundation (for THE cure). I think they have done wonderful things to raise cancer awareness but spending all their money on races and other pinked events and things doesn't do much for me.
'The Komen foundation allots 23 percent of its funds to research and 16 percent to screenings; 37 percent goes to education, 7 percent goes to treatment, and the rest goes to fundraising and administration.' So if I can do math this early in the day while on my first cup of coffee, 23+16+37+7=83%, leaving 17% for fundraising and administration, which isn't that great but isn't that bad either. However if they are for THE cure, why are they only spending 23% on research? That does not do much for THE cure, does it?
Call me an early morning cynic this morning (my husband claims I woke up too early and that means I'll be crabby all day). I just think that pink does not cure breast cancer but more research just might. If you are looking for a worthy cause to donate to breast cancer research, skip the pinked, and look at some others:
National Breast Cancer Coalition - has set a deadline to end breast cancer by 2020. I admire their efforts but think a deadline is a little unrealistic. I mean if they find a cure, why do they have to wait until 2020? If they don't find a cure by 2020 are they declared a failure?
DOD's Breast Cancer Research Program - no you can't donate to this I think but an admirable effort as well. They are the ones who developed the vaccine that is in stage III clinical trials (that I didn't get into) to prevent breast cancer recurrence.
I also like Avon Foundation Breast Cancer Crusade. "...the executive director of the Avon Foundation Breast Cancer Crusade, says his organization splits its funding for screenings and science fairly equally. The foundation allots 75.5 percent of its funds to grants, including breast-cancer research and programs that include screenings; the rest goes to fundraising and management. “Research will end the disease,” he says, “but we have to take care of women who have the disease today." I like the part about taking care of women who have the disease. Some one has to. Pink things don't take care of us.
Let's take care of those of us with cancer and do some research to find a cure so there don't have to be as many of us in the future. You can do that without being pink.
Cancer is hilarious
Well from the patient's side it is, definitely. I posted about being funny last week (or sometime recently that has fallen into the abyss called chemobrain). But some people are funnier than me. I read a blog called 'Cancer is Hilarious' which details the life of Kaylin who had a sarcoma and all sorts of medical adventures. Then in my pursuit to read all things funny about cancer, some how yesterday I stumbled across this fun little project called "Terminally Illin'" where the same Kaylin is raising money on Kickstarter to help publish a cancer cartoon book.
Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original. Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.
She's joined by her pet kitty, Iceman, as they set out to destroy the Tumordome, the invading cancer cell army, and their leader - the little dictator that's bent on world domination. But they don't do it alone - they make friends with a rag-tag bunch of weakened immune system cells that are on their last leg. Hilarity and butt-kicking will ensue.
This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me. There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.
I will donate to their cause on Kickstarter, I encourage others to donate as well.
Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original. Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.
In our story, our hero goes in for her first day of chemo, but ends up getting lost in a fantasy world within her own microscopic body - on a quest to meet her disease face-to-face and kick it's butt!!
This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me. There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.
I will donate to their cause on Kickstarter, I encourage others to donate as well.
Balancing Act
There is a little balancing act here between the opposing sides of:
- detecting new or potential cancers early
- keeping the patient calm
- not over testing or over spending
That lovely phrase, 'With your medical history, we need to be sure... blah, blah, blah', that sends me on to more medical procedures than 10 average human beings combined, I am sure I am responsible for more than my share of high health care costs.
My doctors want to make sure any new or returning cancers are caught early to prevent more expensive and nasty medical adventures. So in return for annual and semi annual and three/four time a year follow up appointments, I am supposed to be happy that they are doing their diligence at this endeavor.
My peace of mind these days is fairly calm, except when I need an ativan to get to a screening which causes a nasty case of 'scanxiety'. I usually can live in the sane world where cancer is only lurking in the back of my brain as opposed to screaming in my frontal lobe. I usually can balance this but any time a doctor says 'with your medical history, we need to be sure... blah, blah, blah' I want to unleash my inner two year old and have a nice little temper tantrum and stick out my tongue at them.
But then there is the 'let's not over test' thought process. I am a big fan of this. I have lots of friends who get PETs, CTs and MRIs to look for cancer cooties. I only get thyroid ultrasounds and mammograms these days - accompanied by lots of poking and prodding. I have no desire to get PETs, CTs, and MRIs personally and if I am sent for one, I may need a temper tantrum
I compare this to normal people who didn't have a mammogram until the age of 40. I started at 23 so I was ahead of the curve because of a benign tumor at that age. I also have had more blood tests and prescriptions than the average person and my current total is 8 surgeries to date (my father beat me on that with a lifetime total of 23). So are the high health care costs my fault? I'm hoping not because I am still here which is the whole point of them in the first place.
Tiered health insurance options
We have heard about the options in tiered health insurance. This is where the insurer negotiates rates with different medical facilities and then charges the patient differently based on where they go. That generic drugs are cheaper than brand name ones, etc. are another side of this.
I have always thought this was a good idea. I think patients have a tendency to either go for medical care to wherever their doctors send them or where they have always gone. Patients are human beings who are essentially lazy and take the path of least resistance. But what if the insurance company started charging them more for where they have always gone? I never thought about that part.
Yesterday as I was rushing to go to work on a rainy Monday, I went back first for my hair brush and second to see if I left the stove on (otherwise I would have had a bad hair day and driven myself crazy all day thinking I was burning down the house with the cat in it), I was also listening to the radio. They had a commercial on for some big health insurance plan where the CEO or some big-wig was on talking about the how's and why's of tiered health care.
I know I go to a relatively 'expensive' hospital but it is the closest one without going into the traffic filled city of Boston. Then the horrifying thought occurred to me - what if they started charging me more to go where my 30+ years of medical records reside? 'Surely they can't mean me' are the blinders we live by when these changes are announced. If this happens, I will have to become a rebel and protest this.
I understand the principle behind this steer patients to the less expensive medical facilities. This may also get them to use the smaller community facilities instead of the fancy (expensive) ones but there also should be some logic applied to this formula. Somewhere in the equation should be the consideration for the patient who doesn't want to go geographically far away for treatment when it good treatment is located near by. (This integration intentioned busing applied to medical care - send the patients to far away places because they want to keep things 'even'.) It sounds good in theory but isn't with the patient's best interests in mind. Hmmm.... must be the insurance companies in charge again.
I have always thought this was a good idea. I think patients have a tendency to either go for medical care to wherever their doctors send them or where they have always gone. Patients are human beings who are essentially lazy and take the path of least resistance. But what if the insurance company started charging them more for where they have always gone? I never thought about that part.
Yesterday as I was rushing to go to work on a rainy Monday, I went back first for my hair brush and second to see if I left the stove on (otherwise I would have had a bad hair day and driven myself crazy all day thinking I was burning down the house with the cat in it), I was also listening to the radio. They had a commercial on for some big health insurance plan where the CEO or some big-wig was on talking about the how's and why's of tiered health care.
I know I go to a relatively 'expensive' hospital but it is the closest one without going into the traffic filled city of Boston. Then the horrifying thought occurred to me - what if they started charging me more to go where my 30+ years of medical records reside? 'Surely they can't mean me' are the blinders we live by when these changes are announced. If this happens, I will have to become a rebel and protest this.
I understand the principle behind this steer patients to the less expensive medical facilities. This may also get them to use the smaller community facilities instead of the fancy (expensive) ones but there also should be some logic applied to this formula. Somewhere in the equation should be the consideration for the patient who doesn't want to go geographically far away for treatment when it good treatment is located near by. (This integration intentioned busing applied to medical care - send the patients to far away places because they want to keep things 'even'.) It sounds good in theory but isn't with the patient's best interests in mind. Hmmm.... must be the insurance companies in charge again.
More on health costs
In a recent study (because we needed another study), it was shown that 26% had a gap in their health insurance coverage in 2011. Why did they have gaps? Job loss or change was a big reason. And the majority had no insurance for more than two years. The reasons for not getting new insurance included high cost of insurance, denial of coverage, and exclusion of coverage for a pre-existing condition.
Then another article, the same one I blogged on yesterday, spoke about cancer costs and why they are so high: Chemotherapy is expensive. New advances have allowed it to be delivered in a pill form. But then insurance covers a much smaller portion.
Another significant reason is health care is more expensive in the US than anywhere else in the world. Much of the medical research happens here which means the US patient is paying for the research that benefits the rest of the world. Is there fairness here? I don't think so. '... medical care providers and drug companies have the upper hand when it comes to price negotiation. The customer/patient is, by definition, in a tight spot.'
Cancer patients bear the brunt of the costs of care. Even those with insurance average $712 per month in out-of-pocket medical expenses. 'The rates of personal bankruptcy are two to six times higher for cancer patients and survivors.
This expense, whether borne by patients, in the form of copays and insurance premiums, or by the public in the form of taxes, takes a toll. One of the hidden costs is apathy.'
Hmmm.... maybe there is room for some change here.
Then another article, the same one I blogged on yesterday, spoke about cancer costs and why they are so high: Chemotherapy is expensive. New advances have allowed it to be delivered in a pill form. But then insurance covers a much smaller portion.
Another significant reason is health care is more expensive in the US than anywhere else in the world. Much of the medical research happens here which means the US patient is paying for the research that benefits the rest of the world. Is there fairness here? I don't think so. '... medical care providers and drug companies have the upper hand when it comes to price negotiation. The customer/patient is, by definition, in a tight spot.'
Cancer patients bear the brunt of the costs of care. Even those with insurance average $712 per month in out-of-pocket medical expenses. 'The rates of personal bankruptcy are two to six times higher for cancer patients and survivors.
This expense, whether borne by patients, in the form of copays and insurance premiums, or by the public in the form of taxes, takes a toll. One of the hidden costs is apathy.'
Hmmm.... maybe there is room for some change here.
Wishing for what isn't
I came across an article and video from a young mother dying of cancer who wants the FDA to release a drug for her that might help her live a little longer. (I admit I didn't watch the whole video.) The article wanders on and discusses the costs of having cancer which is a completely separate, but very important, issue that I won't get into here today. Probably another day that will end up here, again.
While I feel for this young mother who is dying of cancer, I would like to make a point here. She is pleading with the FDA to release a drug which might extend her life. The article notes at the end that the drug manufacturer is working with her doctors on getting her the medication.
But my point is that we can wish for everything we want but we can't assume that we will get what we want and that it will help us the way we want. At every cancer or other icky diagnosis, we wish they could make it go away. But wishes don't solve problems.
As cancer people, we want to be optimistic as we go through treatment. We hope that with every treatment all the evil cancer cooties in our bodies are being killed off. We dream of the days when we have hair, can eat a meal without fighting nausea, and all our treatments and surgeries are done. Optimism goes a long way in treatment. It keeps us positive.
I also think that wishes can cloud our judgement. We can't wish for things that don't exist. We would like to have that cancer free world that exists in Star Trek but we aren't there yet.
This young mother is getting the drug she believes will give her more time before dying. But do we know if it will really work for her and relieve her pain and let her live a little longer? No we don't. So she gets her wish but there is no guarantee.
While I feel for this young mother who is dying of cancer, I would like to make a point here. She is pleading with the FDA to release a drug which might extend her life. The article notes at the end that the drug manufacturer is working with her doctors on getting her the medication.
But my point is that we can wish for everything we want but we can't assume that we will get what we want and that it will help us the way we want. At every cancer or other icky diagnosis, we wish they could make it go away. But wishes don't solve problems.
As cancer people, we want to be optimistic as we go through treatment. We hope that with every treatment all the evil cancer cooties in our bodies are being killed off. We dream of the days when we have hair, can eat a meal without fighting nausea, and all our treatments and surgeries are done. Optimism goes a long way in treatment. It keeps us positive.
I also think that wishes can cloud our judgement. We can't wish for things that don't exist. We would like to have that cancer free world that exists in Star Trek but we aren't there yet.
This young mother is getting the drug she believes will give her more time before dying. But do we know if it will really work for her and relieve her pain and let her live a little longer? No we don't. So she gets her wish but there is no guarantee.
A second career
I have reached a time in my life where I notice my friends starting second careers - either by choice or by happenstance. I have friends who have done all sorts of things. I think should I start a second career but then think I may already have.
I started working in marketing in the mid-1980's. I worked for several different companies over the years. When I got married, I was established in my career working as the marketing director for a non-profit in downtown Boston. I commuted by subway each day. My husband would drop me off at the bus stop on his way to work. I could get to my office in 35 minutes - seated at my desk in fact - after getting on the bus. Coming home took a little longer and I would get home closer to 530 or 6. My husband, who worked closer to home and had the 10 minute commute, would have beat me home by an hour. He would be all relaxed and ready for dinner when I needed to decompress for a bit.
I decided I needed a job closer to home with shorter hours (and a nicer boss) so my hours would more closely align with my husband's. I found a job ten minutes from home with nicer people. That job lasted about five months and then they hit the problem of 'can't pay their employees' so I opted to find another job where I could get a pay check. Two weeks later I got that pesky cancer diagnosis which ruined those plans. I diligently sent out resumes and followed up between surgeries and chemo. I was offered interviews which I ended up declining. Only I thought I could go to job interviews while in chemo.
I gave up the job search business and was offered a part time position back, that I had had before while between jobs years before at a local community ed program. And kept thinking about going back to work. After treatment ended and I recovered from gall bladder surgery, I decided I needed another job. I found one 15 hours/week about 30 minutes from home back doing marketing of all things.
I don't have a title. I am the marketing department. My title is just Marketing. I kind of like that. When I was interviewed I was asked if I was overqualified for the job. I said probably but I am happy not to be on the rat race any more. I said I wanted more flexibility in my life (which is true because I needed to be able to go to doctor appointments).
After another year my community education job came to an end sooner than I thought - we'll just say a co-worker thought I was trying to steal her job and made things very uncomfortable for me. I opted to leave instead of putting up with politics like that in a small office. I then found another part time job doing development for a local non-profit.
Two years later, I am still working two part time jobs and going to (damn) doctor appointments. I have begun to think I did get into a second career and instead of a mid-life crisis I had a second cancer diagnosis. Now I am a professional patient with a couple of side jobs.
I started working in marketing in the mid-1980's. I worked for several different companies over the years. When I got married, I was established in my career working as the marketing director for a non-profit in downtown Boston. I commuted by subway each day. My husband would drop me off at the bus stop on his way to work. I could get to my office in 35 minutes - seated at my desk in fact - after getting on the bus. Coming home took a little longer and I would get home closer to 530 or 6. My husband, who worked closer to home and had the 10 minute commute, would have beat me home by an hour. He would be all relaxed and ready for dinner when I needed to decompress for a bit.
I decided I needed a job closer to home with shorter hours (and a nicer boss) so my hours would more closely align with my husband's. I found a job ten minutes from home with nicer people. That job lasted about five months and then they hit the problem of 'can't pay their employees' so I opted to find another job where I could get a pay check. Two weeks later I got that pesky cancer diagnosis which ruined those plans. I diligently sent out resumes and followed up between surgeries and chemo. I was offered interviews which I ended up declining. Only I thought I could go to job interviews while in chemo.
I gave up the job search business and was offered a part time position back, that I had had before while between jobs years before at a local community ed program. And kept thinking about going back to work. After treatment ended and I recovered from gall bladder surgery, I decided I needed another job. I found one 15 hours/week about 30 minutes from home back doing marketing of all things.
I don't have a title. I am the marketing department. My title is just Marketing. I kind of like that. When I was interviewed I was asked if I was overqualified for the job. I said probably but I am happy not to be on the rat race any more. I said I wanted more flexibility in my life (which is true because I needed to be able to go to doctor appointments).
After another year my community education job came to an end sooner than I thought - we'll just say a co-worker thought I was trying to steal her job and made things very uncomfortable for me. I opted to leave instead of putting up with politics like that in a small office. I then found another part time job doing development for a local non-profit.
Two years later, I am still working two part time jobs and going to (damn) doctor appointments. I have begun to think I did get into a second career and instead of a mid-life crisis I had a second cancer diagnosis. Now I am a professional patient with a couple of side jobs.
Not one but ten different diseases
In case you missed it here and here and here and I am sure many other places there was a new study that found that breast cancer is actually a group or a 'clutch' of ten different diseases. This means that by looking at the genetic markers in your tumor, doctors can treat you better and are better able to predict your survival rate. This is a big breakthrough and I am sure the media needed to post it in millions of places online so that we are sure to read it (but it hasn't been turned into one of those stupid slide shows yet). I am not the first to blog about it, Stephanie beat me to it.
But I am happy about it. It represents a giant leap of progress and will lead to more personalized medicine instead of the slash and burn approach used now. This goes back to the ismycancerdifferent.com people's principle. It may not help me much but will help others.
Now we just need cures for the ten different diseases, not just the one. Big sigh.
But I am happy about it. It represents a giant leap of progress and will lead to more personalized medicine instead of the slash and burn approach used now. This goes back to the ismycancerdifferent.com people's principle. It may not help me much but will help others.
Now we just need cures for the ten different diseases, not just the one. Big sigh.
One is the loneliest number
But why does cancer make it lonelier? Nancy over at Nancy's Point blogged about the loneliness of metastatic breast cancer yesterday - which got me thinking (I'm sorry to say). She also mentioned a few other blogs I follow in her post.
I think cancer can be very isolating and lonely. First of all you feel like crap between surgeries, chemo, and radiation. Then you lose your hair and gain those chemo pounds which make you feel completely unlike a fashion plate and more like a bald, blob. You are reduced to baggy clothes because nothing fits right and some kind of head gear to hide baldness. Finally, it drags on and on and on and on and on and on as you go from doctor to doctor. I would think if you reach the metastatic stage it gets a never ending feel. But it can feel never ending as you plod through the ups and downs of early stage treatment too.
Also, then your 'friends' stop being friends because they might catch cancer cooties. And your Friends don't drop by as often because you are always feeling like crap and they don't want to drop in unexpectedly if you aren't feeling okay. Chemo has a way of making dining out a lot less fun as you fight nausea. You cant drop everything and run off to the beach, a museum, or Tahiti because you either are too tired, have a doctor's appointment, or need to change your chemo schedule. So you just aren't fun.
But I have learned over the years. At my first cancer diagnosis, I tried to talk about it to a few people and managed to lose a few friends in the process so I gave that up. I isolated myself in regards to my cancer. There are people who knew me for decades and didn't know about my cancer. In some ways I felt it wasn't there business but I also felt I couldn't talk to anyone about it.
With my second cancer diagnosis, I was a bit more open. I talk about it. I blog about it. I Facebook about it. One of my jobs doesn't know I have had cancer but the other one is full of cancer people. I talk to cancer people. I have decided not to let myself be lonely again. I may not scream it from the rooftops but it is part of my life and who I am.
If you have cancer, any kind and at any stage, there is no reason not to go on living and trying to go to the beach or run away to Tahiti. Or to not make plans for the next 20 years with friends and family. I have decided not to be lonely.
Cancer twice has caused me to re-evaluate my priorities. I spend less time and energy on things which aren't fun and with people who are toxic. I spend more time doing the things I enjoy with the people I enjoy. I relish the opportunities to be normal. I don't let myself get down into the 'poor me' mentality which is dangerously close to the cancer roller coaster from hell. I have decided not to let cancer make me lonely again.
While I don't have metastatic cancer, I think cancer twice has filled my life with lots of doctors who like to say 'with your medical history we need to be sure.' I make a point not to be lonely.
I think cancer can be very isolating and lonely. First of all you feel like crap between surgeries, chemo, and radiation. Then you lose your hair and gain those chemo pounds which make you feel completely unlike a fashion plate and more like a bald, blob. You are reduced to baggy clothes because nothing fits right and some kind of head gear to hide baldness. Finally, it drags on and on and on and on and on and on as you go from doctor to doctor. I would think if you reach the metastatic stage it gets a never ending feel. But it can feel never ending as you plod through the ups and downs of early stage treatment too.
Also, then your 'friends' stop being friends because they might catch cancer cooties. And your Friends don't drop by as often because you are always feeling like crap and they don't want to drop in unexpectedly if you aren't feeling okay. Chemo has a way of making dining out a lot less fun as you fight nausea. You cant drop everything and run off to the beach, a museum, or Tahiti because you either are too tired, have a doctor's appointment, or need to change your chemo schedule. So you just aren't fun.
But I have learned over the years. At my first cancer diagnosis, I tried to talk about it to a few people and managed to lose a few friends in the process so I gave that up. I isolated myself in regards to my cancer. There are people who knew me for decades and didn't know about my cancer. In some ways I felt it wasn't there business but I also felt I couldn't talk to anyone about it.
With my second cancer diagnosis, I was a bit more open. I talk about it. I blog about it. I Facebook about it. One of my jobs doesn't know I have had cancer but the other one is full of cancer people. I talk to cancer people. I have decided not to let myself be lonely again. I may not scream it from the rooftops but it is part of my life and who I am.
If you have cancer, any kind and at any stage, there is no reason not to go on living and trying to go to the beach or run away to Tahiti. Or to not make plans for the next 20 years with friends and family. I have decided not to be lonely.
Cancer twice has caused me to re-evaluate my priorities. I spend less time and energy on things which aren't fun and with people who are toxic. I spend more time doing the things I enjoy with the people I enjoy. I relish the opportunities to be normal. I don't let myself get down into the 'poor me' mentality which is dangerously close to the cancer roller coaster from hell. I have decided not to let cancer make me lonely again.
While I don't have metastatic cancer, I think cancer twice has filled my life with lots of doctors who like to say 'with your medical history we need to be sure.' I make a point not to be lonely.
What if they started by saying 'I'm Sorry'?
Most people are quick to apologize. However doctors have not been allowed to apologize for errors as they might be taken as admission of guilt in malpractice lawsuits. But what if they could now start with an apology? Would that help? It would for me. If someone does something wrong or something happens that hurts when its not expected, a little apology helps.
When my drain was removed post surgery, I was told 'no problem, it doesn't hurt' by numerous friends, the doctor, and even the nurse who escorted us to the exam room where it was removed. Well they were all wrong. It hurt like hell to put it bluntly. It wasn't a grit your teeth experience, it was worse. My husband said both the doctor and nurse looked surprised and apologetic that it hurt that much. They couldn't say they were sorry about that or 'oops, we didn't expect that'. I would have appreciated that.
There is a new plan by a coalition of Massachusetts hospitals to offer an apology, financial settlement and a cooling off period before any malpractice lawsuit can be filed. And the additional suggestion is made that patients and their families be allowed to participate in committees to help change policy. Hmmm....
An error happens - its part of life. But what if the doctor could start with I'm sorry without fear of it adding to a lawsuit. And what if people had a choice of financial settlement or had to wait six months before they could file a lawsuit. Maybe this would help slow down the 'ambulance chasing' lawyers who help incite the cases. Maybe this would lower malpractice insurance coverage and help stop forcing doctors out of medicine. I'm sorry if you disagree but I do agree.
The 'Real' Causes of breast cancer
Of course when I stumble across an article entitled 'The Real Causes of Breast Cancer' my inquiring mind needs to find out what they are - e.g., where did I go wrong.
First of all I will state I have two problems with the article. It is in slide show format - when did the media decide we needed 'life by PowerPoint' and are in capable of reading more than two sentences without another picture. Second this article is in Third Age magazine which claims to be: '...a leading online lifestage media, marketing and consumer insight company exclusively focused on serving baby boomers.' And I didn't see any scientific basis to this article although they do refer to studies but do not link to any. This is not a medical journal by any stretch.Therefore I revoke its right to put me on any kind of guilt trip.
But here are the causes:
Okay to summarize the bad things are drinking, HRT, fatness, the pill, smoking and not breast feeding. So skinny, sober, women with many children who breast fed and never took HRT have the lowest risk. Gee. I am not skinny, like my wine, have no kids, but never took HRT. Can I have an undo and try life all over again? Ha, ha. No guilt trip for me.
But we can be stressed, play contact sports, smell good, live in clean smelling rooms, and wear under wire bras with out increasing our risk of breast cancer.
And you will note that all of these talk about reducing or increasing risk. But they do not give answers as to why some women get breast cancer in the first place. You can do all the right things and still get cancer. Ask anyone who has lung cancer and never smoked a day in their life.
So this is not the definitive list of things that cause breast cancer after all.
First of all I will state I have two problems with the article. It is in slide show format - when did the media decide we needed 'life by PowerPoint' and are in capable of reading more than two sentences without another picture. Second this article is in Third Age magazine which claims to be: '...a leading online lifestage media, marketing and consumer insight company exclusively focused on serving baby boomers.' And I didn't see any scientific basis to this article although they do refer to studies but do not link to any. This is not a medical journal by any stretch.Therefore I revoke its right to put me on any kind of guilt trip.
But here are the causes:
- Alcohol - strong link to to drinking more than two drinks a day will increase a woman's breast cancer risk.
- Stress - weak link
- Hormone Replacement Therapy - strong link
- Breast trauma - weak link
- Weight gain - strong link if a woman gains more than 30 lbs in her adult life.
- Household cleaning products - weak link but there was a study that found that women who used air freshener sprays were 20% more likely to get breast cancer. My advice - open the damn windows
- Taking the pill - strong link to slightly increasing the risk of breast cancer but also a strong link to reducing risk of getting ovarian or uterine cancers
- Underwire bras - weak link - oh, please what paranoid person thought this one up.
- Smoking - strong link - well, duh
- Not breast feeding - strong link
- Anti-perspirant - weak link - another one from the files of the paranoid that actually started as an email hoax
Okay to summarize the bad things are drinking, HRT, fatness, the pill, smoking and not breast feeding. So skinny, sober, women with many children who breast fed and never took HRT have the lowest risk. Gee. I am not skinny, like my wine, have no kids, but never took HRT. Can I have an undo and try life all over again? Ha, ha. No guilt trip for me.
But we can be stressed, play contact sports, smell good, live in clean smelling rooms, and wear under wire bras with out increasing our risk of breast cancer.
And you will note that all of these talk about reducing or increasing risk. But they do not give answers as to why some women get breast cancer in the first place. You can do all the right things and still get cancer. Ask anyone who has lung cancer and never smoked a day in their life.
So this is not the definitive list of things that cause breast cancer after all.
Allow me to be a little smug
They didn't need a study to prove it (as if we needed a medical study). I knew this all along. Exercise has now been proven to help breast cancer patients. Go back and read my blog in 2007. You will note I talk about my daily walk. I did go for a daily walk all during treatment - surgery, chemo, radiation. The only time I skipped a day was if I was hospitalized.
Before my diagnosis, I was going for a daily walk anyway. I just saw no reason to stop because of the pesky cancer thing. It was actually a good thing to do. It helped with side effects. It helped with sleeping - physically tiring yourself out lets you sleep better at night. It helped with my mood. All through treatment, no one ever discouraged me from walking. The nurses and doctors were very supportive and encouraged me to continue.
I even belonged to a gym. Before breast cancer, I had hit a certain 'age' that ended in a zero and had decided I should join a gym and do weight bearing exercise as I was now aging. Well, I went to the gym. I looked at the machines and went over to the elliptical or the treadmill. I didn't know how to use the machines. And then my back went bad and all those machines, treadmill, and elliptical managed to make my back hurt.
I have since given up that gym and joined the gym for dilapidated people like me. There are many dilapidated people there - seriously, walkers, oxygen tanks, wheel chairs, prostheses, etc. The gym is run by physical therapists and designed for people with health issues. They work around my problems and I can actually get in a good work out.
One of my issues is lymphedema. In the past, they used to tell women with lymphedema were told - no exercise, not to strain your arm, just do these stupid little exercises to get your lymph system moving and prevent fluid build up in your arm. Then a study came along (of course another study or ten) which said light exercise was beneficial.
[I am training for my body building competition by lifting one pound weights - 2 sets of 15 reps of front and side lifts. Well, its not just my lymphedema problem in my left arm, its my tennis elbow in my right arm that won't go away and whatever weird thing is going on with my shoulder that hamper my chances for a win.]
But I have digressed way too far here, completely off topic in fact. I am a bit smug because I exercised all through breast cancer treatment and now a study proves I was right all along. Now its time for me to hit the gym.
Before my diagnosis, I was going for a daily walk anyway. I just saw no reason to stop because of the pesky cancer thing. It was actually a good thing to do. It helped with side effects. It helped with sleeping - physically tiring yourself out lets you sleep better at night. It helped with my mood. All through treatment, no one ever discouraged me from walking. The nurses and doctors were very supportive and encouraged me to continue.
I even belonged to a gym. Before breast cancer, I had hit a certain 'age' that ended in a zero and had decided I should join a gym and do weight bearing exercise as I was now aging. Well, I went to the gym. I looked at the machines and went over to the elliptical or the treadmill. I didn't know how to use the machines. And then my back went bad and all those machines, treadmill, and elliptical managed to make my back hurt.
I have since given up that gym and joined the gym for dilapidated people like me. There are many dilapidated people there - seriously, walkers, oxygen tanks, wheel chairs, prostheses, etc. The gym is run by physical therapists and designed for people with health issues. They work around my problems and I can actually get in a good work out.
One of my issues is lymphedema. In the past, they used to tell women with lymphedema were told - no exercise, not to strain your arm, just do these stupid little exercises to get your lymph system moving and prevent fluid build up in your arm. Then a study came along (of course another study or ten) which said light exercise was beneficial.
[I am training for my body building competition by lifting one pound weights - 2 sets of 15 reps of front and side lifts. Well, its not just my lymphedema problem in my left arm, its my tennis elbow in my right arm that won't go away and whatever weird thing is going on with my shoulder that hamper my chances for a win.]
But I have digressed way too far here, completely off topic in fact. I am a bit smug because I exercised all through breast cancer treatment and now a study proves I was right all along. Now its time for me to hit the gym.
I'm allowed to be funny
In this morning's newspaper advice column (go to the second question), someone wrote in and said that she was someone living with cancer and had lost her mother to cancer and used humor to cope - and that offended someone. Who is this moron (and I use the term loosely)? The person who is offended I mean. The person who wrote in is sane, normal and intelligent because they questioned the 'moron's' thought process.
If us lucky people with cancer couldn't use humor, we would be boring. And depressed. And no fun whatsoever. We would need (more) therapy. We would be fat(ter) and lazier. We wouldn't be having fun with life which is a big part of living.
I use humor to cope because I can't do it any other way. I refer to us as the ones 'lucky enough' to get cancer because if I look at it any other way, it would be depressing. And that would suck. Besides it puts us in some sort of elite list - which makes us special. And we need to be special damn it. We would prefer not to have oncologists on speed dial or have their email addresses memorized.
Go Google the term 'laughter is the best medicine' and you will find numerous results - and many are based on medical studies (because we needed more medical studies) to prove that it is true. Where would life be without humor? Kind of boring. Was cancer supposed to suck the life and humor out of us? With a cancer diagnosis are we supposed to go sit in a chemo waiting room for eternity? Now that would be a real hell.
I'm allowed to be funny. I just hope other people think I'm funny. Sometimes I wonder if I am....
If us lucky people with cancer couldn't use humor, we would be boring. And depressed. And no fun whatsoever. We would need (more) therapy. We would be fat(ter) and lazier. We wouldn't be having fun with life which is a big part of living.
Why I don't walk
I have never and will never go on a pink walk - or one of any other color. I feel no need. I admit I contemplated it once - for a brief while. But it will never be me. Nor do I ever plan on attending an event in a pink boa, tutu, t-shirt, or covered in pink ribbons.
I like pink. I really miss my old pink Red Sox hat that I lost. Its replacement just doesn't feel right and hasn't faded correctly. I own many pink garments - but do not wear ones which spell out breast cancer or that other evil label 'survivor'. Those are good for cleaning. I do own a pinked ice cream scoop and a pinked knife - both of which are of really good quality (Kitchen Aid I believe) and are very useful so I'll keep them.
But I digress. I do not walk. These 'walks' take all the fun out of walking. I enjoy regular walks. I used to walk every day. Now I go to the gym for dilapidated people three days a week and try to walk on the other days.
These 'walks' ask participants to go on training walks with the right equipment and in groups - there is no spontaneity there of walking out the door and enjoying the fresh air and sights around you. You also have to go to meetings, get a walker 'coordinator' to help you choose a training program, a handbook, and have to fund raise - a LOT of money.
I don't need a handbook, meeting or training program to know how to walk. Its very easy. I have been doing it since I was about one year old. It involves right, left, right, left, right, left, etc or you can go left, right, left, right, left, right, left, right, etc - you know what I mean. Its not complicated.
There are some short walks of three or five miles or kilometers or whatever they choose. You don't really need much training for those - maybe a new pair of sneakers, some good socks and a water bottle. If you aren't healthy you can do other things to help - fund raise, donate, sign in people, etc. But then you add in the distance of 40 or 60 miles and most people need some training. I think this takes all the fun out of walking - when you are given instructions on how far etc. A walk should be spontaneous and enjoyable.
I hear these lovely quotes in their advertisements 'I didn't think I could ever walk 40 miles but since my mother/sister/friend was strong enough to survive whatever cancer, I can do it.' And you hear about how people were inspired, elated, reborn or whatever by doing the walk. Blah, blah, blah. That doesn't do it for me.
My sister and a friend did the 40 mile walk a few years ago. I went and joined them for a half mile or so. It was a nice thing for them to do but I would never. Now that I have walked a tiny bit of a walk with them, I have decided its not a walk, its a parade. There are people on the side lines, there are cheering sections, there is music, there are bathroom stops, snack stops, and rest stops.You get to sleep in a tent in a field with thousands of other people.
I don't like being on parade with a bunch of other people who are dressed up in weird outfits. I like going to parades and will go to one either tomorrow or Monday or both. But I dislike being on parade. The participants in the real parades are not on parade, they are out to support whatever they want - not for a cause that requires a training program, handbook, and coordinator.
I like pink. I really miss my old pink Red Sox hat that I lost. Its replacement just doesn't feel right and hasn't faded correctly. I own many pink garments - but do not wear ones which spell out breast cancer or that other evil label 'survivor'. Those are good for cleaning. I do own a pinked ice cream scoop and a pinked knife - both of which are of really good quality (Kitchen Aid I believe) and are very useful so I'll keep them.
But I digress. I do not walk. These 'walks' take all the fun out of walking. I enjoy regular walks. I used to walk every day. Now I go to the gym for dilapidated people three days a week and try to walk on the other days.
These 'walks' ask participants to go on training walks with the right equipment and in groups - there is no spontaneity there of walking out the door and enjoying the fresh air and sights around you. You also have to go to meetings, get a walker 'coordinator' to help you choose a training program, a handbook, and have to fund raise - a LOT of money.
I don't need a handbook, meeting or training program to know how to walk. Its very easy. I have been doing it since I was about one year old. It involves right, left, right, left, right, left, etc or you can go left, right, left, right, left, right, left, right, etc - you know what I mean. Its not complicated.
There are some short walks of three or five miles or kilometers or whatever they choose. You don't really need much training for those - maybe a new pair of sneakers, some good socks and a water bottle. If you aren't healthy you can do other things to help - fund raise, donate, sign in people, etc. But then you add in the distance of 40 or 60 miles and most people need some training. I think this takes all the fun out of walking - when you are given instructions on how far etc. A walk should be spontaneous and enjoyable.
I hear these lovely quotes in their advertisements 'I didn't think I could ever walk 40 miles but since my mother/sister/friend was strong enough to survive whatever cancer, I can do it.' And you hear about how people were inspired, elated, reborn or whatever by doing the walk. Blah, blah, blah. That doesn't do it for me.
My sister and a friend did the 40 mile walk a few years ago. I went and joined them for a half mile or so. It was a nice thing for them to do but I would never. Now that I have walked a tiny bit of a walk with them, I have decided its not a walk, its a parade. There are people on the side lines, there are cheering sections, there is music, there are bathroom stops, snack stops, and rest stops.You get to sleep in a tent in a field with thousands of other people.
I don't like being on parade with a bunch of other people who are dressed up in weird outfits. I like going to parades and will go to one either tomorrow or Monday or both. But I dislike being on parade. The participants in the real parades are not on parade, they are out to support whatever they want - not for a cause that requires a training program, handbook, and coordinator.
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