Every day my morning starts with 'ouch', 'ow', 'owie', and more. And my husband looks at me and says are you sure you are are okay for whatever my day is planned. I say yes and suck it up. And maybe take a pain pill.
Yes, that's my life. I don't ask for pity. I cope. I take steps to work on my pain.
I have upped my arthritis medication and go back to my rheumatologist in July. I also have a 'procedure' (which involves sedation and lots of needles) on at the end of June which will alleviate a lot of back pain. I see my primary care (well her nurse practitioner becuase she will be on maternity leave) also in June where I will talk about my hand pain from the stupid (untreatable) ganglion cyst and my knees' general lack of cooperation with my desire to live a pain free life.
All those fancy pain medications you see advertised won't help me much. I have already tried the fancy ones for fibromyalgia and they haven't done much for me. And the other fancy medications, the biologics, for rheumatoid I can't take because of my cancer history, blah, blah, blah.
I am being honest here. I usually am honest in my blog but sometimes I elusively play with the truth and am not as open about some topics. What I do is I withhold the truth until I want to talk about things.
I mean living with pain is not like living with cancer or anything but it does kind of suck in a way. I do get all the good drugs.
But as I said before I am not asking for pity. And if I anyone says 'I'm sorry' to me about this post, I'll be sure to smack you silly next time I see you.
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Friday, May 24, 2013
Sunday, April 14, 2013
I get so confused on all this progress business
I do think this is progress but I don't know if its 'new to me' so to speak or if I did blog about it previously. Well, either way its a nice story and its nice to see progress. But further testing is needed, its only available in clinical trials, and more trials may be required so it is still months or years away from being available.
Sunday, March 10, 2013
Why go to a cancer center?
So why go to a cancer center for your treatment? Why is it so important? Do you want someone to treat you who treats one case pf breast cancer a month or someone who treats dozens of cases each month?
There can be little bitty differences in tests, biopsies, side effects and a lot of other things that may not be significant to a doctor who sees them as being in the normal range but to a specialist as a group they may provide an indicator of something else.
This video actually does a really good job of explaining the importance of going to a specialist and a cancer center.
It is also true of going to specialists for a lot of different medical issues. It might even justify all the specialists I see - medical oncologist, radiation oncologist, breast surgeon, endocrinologist, rhematologist - that I see regularly in addition to my primary care and my therapists.
There can be little bitty differences in tests, biopsies, side effects and a lot of other things that may not be significant to a doctor who sees them as being in the normal range but to a specialist as a group they may provide an indicator of something else.
This video actually does a really good job of explaining the importance of going to a specialist and a cancer center.
It is also true of going to specialists for a lot of different medical issues. It might even justify all the specialists I see - medical oncologist, radiation oncologist, breast surgeon, endocrinologist, rhematologist - that I see regularly in addition to my primary care and my therapists.
Friday, February 22, 2013
Fibro what?
So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.
Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.
Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!
So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:
But otherwise I am a very healthy person.
Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.
Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!
So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:
- "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
- The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
- More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
- Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
- Fatigue, night sweats and sleep disturbances.
- Memory difficulties and cognitive difficulties.
- Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
- Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
- Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
- Hearing, vision, and vestibular (balance) abnormalities.
- Heartburn, palpitations and irritable bowel syndrome.
- Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
- Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "
But otherwise I am a very healthy person.
Monday, December 10, 2012
DNA mapping
Hmmm.... I like this concept of mapping the DNA of cancer patients. Actually the UK's National Health Service has announced a plan to map the DNA of 100,00 patients with rare diseases and cancers. (And the immediate comments on the article are how did the British government come up with the 100 million pounds to pay for this during the time of austerity.)
Politics and financing (and squabbling) aside I think this is a good idea. I have always wondered why I have been lucky enough to have cancer twice while the rest of my family remains healthy. If my DNA would tell something about it, I would welcome the opportunity to learn more about me.
Actually I would not be surprised if a lot of the secrets of us less than healthy people could be discovered in our DNA. Now that the price has dropped significantly to between 5 and 10 thousand pounds, it is getting within the range of affordability (come on, work with me if some cancer drugs can cost upwards of $100,000/year this is affordable). Maybe a little more money should be spent on looking at why some people seem to get the ailments. (I could be their poster child.) Instead of just throwing money at a cure.
An ounce of prevention is worth a pound of cure.
Politics and financing (and squabbling) aside I think this is a good idea. I have always wondered why I have been lucky enough to have cancer twice while the rest of my family remains healthy. If my DNA would tell something about it, I would welcome the opportunity to learn more about me.
Actually I would not be surprised if a lot of the secrets of us less than healthy people could be discovered in our DNA. Now that the price has dropped significantly to between 5 and 10 thousand pounds, it is getting within the range of affordability (come on, work with me if some cancer drugs can cost upwards of $100,000/year this is affordable). Maybe a little more money should be spent on looking at why some people seem to get the ailments. (I could be their poster child.) Instead of just throwing money at a cure.
An ounce of prevention is worth a pound of cure.
Saturday, December 24, 2011
More pictures!
Are more pictures better? Back in the days of black and white cameras on tripods, a professional photographer would come and take a single posed shot of serious looking people dressed in black. After being hand developed a single picture was produced with no copies to send out to friends a relatives. Then personal cameras came into play and little towers of flash cubes were added on. Film was sent out to be developed and you crossed your fingers until they came back to hope that everything was in focus. You might take a couple to double your luck but still a lot was left up to chance. Then digital cameras came along and we clicked away like mad - shared them everywhere. Focus and aim become less important as quantity increases your odds for a good shot. All of our foibles in living color are available worldwide in this digital age.
In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more. Is this better or not?
Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.
Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.
In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more. Is this better or not?
Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.
Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.
Saturday, November 26, 2011
Cancer isn't cheap
Cancer is a very expensive ailment - even with health insurance. I have relatively good health insurance and for the fifth year in a row, I will max out my allowable out of pocket expenses at $5000. That amount really only covers my co-payments and prescription costs. Everything else is additional - travel, parking fees, dentists, eye doctors, etc. And my income has gone down because I don't work full time anymore. I work two part time jobs which get me close to full time hours. Since they are part time, I get no benefits from either. No paid time off, no retirement, etc. If I am not there I do not get paid.
As someone lucky enough to be living with cancer who gets to go to the doctor all the time, my expenses definitely add up. This coming week I have four doctor appointments. Last week I had none - because it was a short week. The week before I had three or four. I probably average around 8 each month. Each usually has a $20 co-pay.And I am not in active treatment - I just have follow ups and other medical issues.
I think this is a side of cancer that is under reported. People with health insurance have hefty bills as well. I think I have good insurance because it has an out of pocket maximum. Many people do not have this benefit and their bills run into the thousands annually.
This morning I received an email announcing a new online webinar on Managing the Costs of Cancer Care on December 8. I am not sure I can go but I have signed up for it and will see about rearranging my schedule if needed. There are also two recorded webinars that I want to listen to soon: Managing the Costs of Recovery and Money Matters: Finding the Resources to Manage Cancer Costs.
Something about the whole thing irks me about this whole thing. I feel like the patient is the pawn in the scam of ridiculously expensive medications, big salaries for someone somewhere, and insurance companies deciding what they will and won't pay for. We can only afford to get cancer if we are rich.
As someone lucky enough to be living with cancer who gets to go to the doctor all the time, my expenses definitely add up. This coming week I have four doctor appointments. Last week I had none - because it was a short week. The week before I had three or four. I probably average around 8 each month. Each usually has a $20 co-pay.And I am not in active treatment - I just have follow ups and other medical issues.
I think this is a side of cancer that is under reported. People with health insurance have hefty bills as well. I think I have good insurance because it has an out of pocket maximum. Many people do not have this benefit and their bills run into the thousands annually.
This morning I received an email announcing a new online webinar on Managing the Costs of Cancer Care on December 8. I am not sure I can go but I have signed up for it and will see about rearranging my schedule if needed. There are also two recorded webinars that I want to listen to soon: Managing the Costs of Recovery and Money Matters: Finding the Resources to Manage Cancer Costs.
Something about the whole thing irks me about this whole thing. I feel like the patient is the pawn in the scam of ridiculously expensive medications, big salaries for someone somewhere, and insurance companies deciding what they will and won't pay for. We can only afford to get cancer if we are rich.
Sunday, November 20, 2011
It saved my life
Frankly I am sick of these people who are quoted in articles saying something 'saved their life'. Especially when its something that is newly developed and just made available. 3-D digital mammograms are used at Mass General where they were developed and finally approved by the FDA this year. Of course in the article, a woman is quoted as saying the 3-D mammogram saved her life. (I do not know who this woman is and think she is lucky when they caught her breast cancer when they did.) But I have a problem with the 'saving her life' bit.
The article is titled 'New 3-D mammograms could save lives'. Well, I'll put that in the 'duh' category. New medical advances are done to save lives. We know that. This is what sustains medical research - the chance to save lives, have people live longer, and suffer less.
But somewhere in there the translation to saving her specific life I feel a disconnect. Would she have died if this technology not been invented? By thinking this way, are we setting ourselves up for an unattainable desire for the ultimate medical cure/test/procedure that heals us all? Isn't this thinking 'without this I would be dead' a tad idealistic?
What I am trying to say is that medical advances are wonderful and do save lives. But:
We can't set ourselves up for hoping for the unattainable. We have to live with medical advances as they are and not for how they will be in the future or never. We have to accept that what is standard treatment is what we can expect. We can't expect things that don't exist yet. We would be setting ourselves up for disappointment.
I do not credit a single thing with saving my life. What has made me live as long as I have is a bit of common sense (eat right, look both ways before crossing the street, wearing my seat belt, etc.), exercising, getting appropriate medical are (annual physicals, dentists, eye doctors, etc), and even remembering to take my vitamins. I can't think of a single thing that 'saved my life'. My cancers were both caught through regular medical exams - throat check after repeated cases of strep and an annual mammogram. Did they save my life? I don't give them credit.
The article is titled 'New 3-D mammograms could save lives'. Well, I'll put that in the 'duh' category. New medical advances are done to save lives. We know that. This is what sustains medical research - the chance to save lives, have people live longer, and suffer less.
But somewhere in there the translation to saving her specific life I feel a disconnect. Would she have died if this technology not been invented? By thinking this way, are we setting ourselves up for an unattainable desire for the ultimate medical cure/test/procedure that heals us all? Isn't this thinking 'without this I would be dead' a tad idealistic?
What I am trying to say is that medical advances are wonderful and do save lives. But:
We can't set ourselves up for hoping for the unattainable. We have to live with medical advances as they are and not for how they will be in the future or never. We have to accept that what is standard treatment is what we can expect. We can't expect things that don't exist yet. We would be setting ourselves up for disappointment.
I do not credit a single thing with saving my life. What has made me live as long as I have is a bit of common sense (eat right, look both ways before crossing the street, wearing my seat belt, etc.), exercising, getting appropriate medical are (annual physicals, dentists, eye doctors, etc), and even remembering to take my vitamins. I can't think of a single thing that 'saved my life'. My cancers were both caught through regular medical exams - throat check after repeated cases of strep and an annual mammogram. Did they save my life? I don't give them credit.
Monday, August 15, 2011
Decisions, decisions, decisions
Yesterday's post generated a few comments on Facebook so I decided that I wanted to write more about decision making in medical treatment. You have an ailment, you go to the doctor, and they tell you what they recommend. It is your choice to follow it. You are a mature adult and you can decide what you want to do to your body.
However it is your obligation to make a good decision. A good decision is defined as one that is based on a rational decision making process. You can ask your doctor what the side effects would be or the pain level of the 'medical adventure' or whatever else you want to know. You can get a second opinion. Or you can do some research on your own - online at credible websites or through other medical professionals or even people who have gone through the procedure.
You should also put some thought into the big picture. Yesterday's example was that of a woman who is refusing chemo because she didn't want to lose her hair. This was a potentially life saving treatment being refused because of a minor side effect. But if you are having chest pains and the doctor says you need a bypass or you will not survive through any more stresses on your heart and you choose not to follow their advice. You need to realize that this could kill you.
I know numerous people who have chosen to skip traditional Western medical treatment and have gone with alternative medicine, modalities such as acupuncture or reiki, or diet modification. They are happy with their decisions and credit them with saving their lives.
Yes it is your body and your choice as to what you want to do. I guess my point is that you make your decisions as you want. If you don't change your behavior in someway - through medical or other treatment - your health isn't going to improve. A decision is an action. An action causes change. An inaction does not result in change. But a bad decision that is done without thought to the consequences is just as bad as indecision or inaction.
However it is your obligation to make a good decision. A good decision is defined as one that is based on a rational decision making process. You can ask your doctor what the side effects would be or the pain level of the 'medical adventure' or whatever else you want to know. You can get a second opinion. Or you can do some research on your own - online at credible websites or through other medical professionals or even people who have gone through the procedure.
You should also put some thought into the big picture. Yesterday's example was that of a woman who is refusing chemo because she didn't want to lose her hair. This was a potentially life saving treatment being refused because of a minor side effect. But if you are having chest pains and the doctor says you need a bypass or you will not survive through any more stresses on your heart and you choose not to follow their advice. You need to realize that this could kill you.
I know numerous people who have chosen to skip traditional Western medical treatment and have gone with alternative medicine, modalities such as acupuncture or reiki, or diet modification. They are happy with their decisions and credit them with saving their lives.
Yes it is your body and your choice as to what you want to do. I guess my point is that you make your decisions as you want. If you don't change your behavior in someway - through medical or other treatment - your health isn't going to improve. A decision is an action. An action causes change. An inaction does not result in change. But a bad decision that is done without thought to the consequences is just as bad as indecision or inaction.
Tuesday, June 21, 2011
My medical advice
I have decided that it is time to share my medical advice - garnered from years of being a patient. I never went to medical school and still close my eyes any time a needle is near but I do have my opinions (of course I do, if I didn't have an opinion I wouldn't have anything to write about in my blog).
- Medical advice from your doctor is in the same category as speed limits. It is your choice to heed them but if you don't you may end up paying a price. I do listen to my doctor and usually follow their advice but sometimes do not and then I tell them about it. If you just ignore the speed limit and your doctor's advice you may end up in a different category - dead.
- Hospitals are no place to get any kind of rest or personal attention. They are places to get poked and prodded and monitored and finally, luckily, you get sent home.
- The biggest lies in the medical industry are: 'you might feel a pinch/pressure/discomfort for a second', 'after a short recovery, you will be ready to go home', 'most people experience improvement within 24 hours'.
- The things they don't tell you before surgery or other medical adventures: how much pain you will be in, how long until you feel like your old self, and what your scar will look like.
- The more medical adventures you have the less modesty you retain.
- Your insurance company will always try to interfere with your medical life in someway - by when you can refill your prescription, which procedure you are privileged to have, and when you can see your doctor.
- You need to be armed for every doctor visit with your list of medications, list of questions to ask, and sometime to occupy your time - book, newspaper, etc - while you wait. The less you have to occupy your time, the longer you will wait bored out of your mind.
That is the sum of my medical knowledge. I am happy to share. If you have anything else to add, please let me know.
- Medical advice from your doctor is in the same category as speed limits. It is your choice to heed them but if you don't you may end up paying a price. I do listen to my doctor and usually follow their advice but sometimes do not and then I tell them about it. If you just ignore the speed limit and your doctor's advice you may end up in a different category - dead.
- Hospitals are no place to get any kind of rest or personal attention. They are places to get poked and prodded and monitored and finally, luckily, you get sent home.
- The biggest lies in the medical industry are: 'you might feel a pinch/pressure/discomfort for a second', 'after a short recovery, you will be ready to go home', 'most people experience improvement within 24 hours'.
- The things they don't tell you before surgery or other medical adventures: how much pain you will be in, how long until you feel like your old self, and what your scar will look like.
- The more medical adventures you have the less modesty you retain.
- Your insurance company will always try to interfere with your medical life in someway - by when you can refill your prescription, which procedure you are privileged to have, and when you can see your doctor.
- You need to be armed for every doctor visit with your list of medications, list of questions to ask, and sometime to occupy your time - book, newspaper, etc - while you wait. The less you have to occupy your time, the longer you will wait bored out of your mind.
That is the sum of my medical knowledge. I am happy to share. If you have anything else to add, please let me know.
Saturday, June 18, 2011
Just say no to drugs
I hate taking medication. I really do. I think one's body is a machine that should be able to run with out 'help'. I take as few as possible - currently five daily - and I consider that way to high. I do keep doses as low as possible and refuse additional ones unless needed. I do admit to taking antibiotics recently for a toe nail infection.
I don't understand the people who go to doctors wanting more drugs or treatments. But apparently they exist. I think of these people as the one's who will end up robbing a pharmacy for their Oxycontin or something... Michael Jackson is an example. He had insomnia and had his own personal doctors travel with him to keep him supplied. That's a bit over the top.
I recently had a conversation with my therapist. She had switched me to a new anti-depressant and after a month when I seemed to be doing okay, she said she would double my dose. I asked her why and she said that is normal protocol. Well, maybe its normal but not for me. I told her I did not want to and we had a small disagreement. Finally we left it as I would keep the original dose and call her if I felt it needed to be increased.
I don't understand this. If I could skip the drugs I take, I would. I am on anti inflammatories and pain meds for my back. I take synthetic thyroid medication as I don't have a thyroid. I take an aromatase inhibitor to prevent breast cancer return. I take an antidepressant. I also have back up meds for more pain if needed.
I am not trying to fund the pharmaceutical industry but sometimes I seem if I am. My response if offered additional prescriptions is do I really need this and why? A friend calls it 'better living through chemistry' and while I do see some value in that, what if there was a world where I didn't have to take anything? I could just say no to drugs.
I don't understand the people who go to doctors wanting more drugs or treatments. But apparently they exist. I think of these people as the one's who will end up robbing a pharmacy for their Oxycontin or something... Michael Jackson is an example. He had insomnia and had his own personal doctors travel with him to keep him supplied. That's a bit over the top.
I recently had a conversation with my therapist. She had switched me to a new anti-depressant and after a month when I seemed to be doing okay, she said she would double my dose. I asked her why and she said that is normal protocol. Well, maybe its normal but not for me. I told her I did not want to and we had a small disagreement. Finally we left it as I would keep the original dose and call her if I felt it needed to be increased.
I don't understand this. If I could skip the drugs I take, I would. I am on anti inflammatories and pain meds for my back. I take synthetic thyroid medication as I don't have a thyroid. I take an aromatase inhibitor to prevent breast cancer return. I take an antidepressant. I also have back up meds for more pain if needed.
I am not trying to fund the pharmaceutical industry but sometimes I seem if I am. My response if offered additional prescriptions is do I really need this and why? A friend calls it 'better living through chemistry' and while I do see some value in that, what if there was a world where I didn't have to take anything? I could just say no to drugs.
Wednesday, June 8, 2011
Its good for the hospital but is it good for the patients?
This morning I am horrified (is that too much?) that the hospital, Lahey Clinic, where I go for all my treatment might merge with another hospital, Beth Israel Deaconess, buried in downtown Boston (which I avoid like the plague these days). I like Lahey. Its a 10-15 minute drive at most. It is in the suburbs. It is convenient. I can find everything I need there. Don't change it! If I need something, like a test, procedure or other medical adventure, its all in the same place. They do have other offices around the area but they are all within the same 10-15 minutes except the one that is 5 minutes from one of my jobs. I don't have to get a road map to get to my appointments and deal with traffic, stress, and parking.
They are only in preliminary talks with BID and it could be some time in the future. "Hospitals across Massachusetts are merging or considering it, because of a growing trend toward giving providers an annual budget for each patient, adjusted for the patient’s specific medical condition, rather than separate fees for each appointment, test, and procedure. Doctors and hospitals that are part of larger coordinated networks and can oversee all of a patient’s medical needs are considered most likely to succeed under this system of global payments."
I appreciate that the hospitals want to survive but this is the part I don't like. "While ultimately successful, the Beth Israel Deaconess merger was deeply troubled for years." I don't want a hospital which is 'deeply troubled'. I want a hospital that takes good care of its patients, is nice to them, and has a decent cafeteria and everything is in the same place.
It is noted that "if they merge and bring on community hospitals, they would form “a really rich and formidable network’’ that would “provide a great deal of choice’’ for patients."
Well that's nice. But in the meantime all I ask is that you please pay attention to the patients and their abilities to accept change in their medical treatment. I do not want to be sent to downtown Boston for treatment or tests. I want everything to be conveniently located in the same building. Call me whiny if you want but I'm not changing.
They are only in preliminary talks with BID and it could be some time in the future. "Hospitals across Massachusetts are merging or considering it, because of a growing trend toward giving providers an annual budget for each patient, adjusted for the patient’s specific medical condition, rather than separate fees for each appointment, test, and procedure. Doctors and hospitals that are part of larger coordinated networks and can oversee all of a patient’s medical needs are considered most likely to succeed under this system of global payments."
I appreciate that the hospitals want to survive but this is the part I don't like. "While ultimately successful, the Beth Israel Deaconess merger was deeply troubled for years." I don't want a hospital which is 'deeply troubled'. I want a hospital that takes good care of its patients, is nice to them, and has a decent cafeteria and everything is in the same place.
It is noted that "if they merge and bring on community hospitals, they would form “a really rich and formidable network’’ that would “provide a great deal of choice’’ for patients."
Well that's nice. But in the meantime all I ask is that you please pay attention to the patients and their abilities to accept change in their medical treatment. I do not want to be sent to downtown Boston for treatment or tests. I want everything to be conveniently located in the same building. Call me whiny if you want but I'm not changing.
Saturday, May 7, 2011
Should your doctor tell you the truth or what you want to hear?
So you go to see your doctor because you have been sick for a week and you want some antibiotics so you can finally get better. Or you have a cough and are concerned its more than just a cough and think the doctor should give you a chest x-ray to make sure its nothing more. You get the point - you go to the doctor with an expectation of care you should receive.
But the doctor doesn't agree and says what you want is unneeded. Your cold is a cold and will get better, antibiotics will do nothing. Your cough is a cough and you don't need an x-ray. Should the doctor agree with you and give you the antibiotics or x-ray or should they just tell you the truth? I want the truth.
I don't want a doctor to sugarcoat anything (especially when they say 'you may feel a pinch' - I want them to say 'it will hurt a lot and grit your teeth'), I want them to tell me the truth. I don't like doctors who try to paint a fluffy pastel colored picture of my health. Give me the details and the numbers and I'll suck it up and cope with it.
Maybe other people are different, they don't want the truth in a big pile of information, they want little bits over time or just don't want the details, they just want a cure for whatever they had.
I like my breast surgeon, he is good for telling it like he sees it. He has said things to me in a very open style that tells me the truth. Some people don't like him because he tells things very plainly but I appreciate it.
I have also learned that just because I make assumptions about what I want for care, the doctors are the ones that have the training to make the decision on what is really needed. I let them make the decisions and tell me why I need what they suggest. But then I do make sure I agree with them. Its my body after all.
But the doctor doesn't agree and says what you want is unneeded. Your cold is a cold and will get better, antibiotics will do nothing. Your cough is a cough and you don't need an x-ray. Should the doctor agree with you and give you the antibiotics or x-ray or should they just tell you the truth? I want the truth.
I don't want a doctor to sugarcoat anything (especially when they say 'you may feel a pinch' - I want them to say 'it will hurt a lot and grit your teeth'), I want them to tell me the truth. I don't like doctors who try to paint a fluffy pastel colored picture of my health. Give me the details and the numbers and I'll suck it up and cope with it.
Maybe other people are different, they don't want the truth in a big pile of information, they want little bits over time or just don't want the details, they just want a cure for whatever they had.
I like my breast surgeon, he is good for telling it like he sees it. He has said things to me in a very open style that tells me the truth. Some people don't like him because he tells things very plainly but I appreciate it.
I have also learned that just because I make assumptions about what I want for care, the doctors are the ones that have the training to make the decision on what is really needed. I let them make the decisions and tell me why I need what they suggest. But then I do make sure I agree with them. Its my body after all.
Wednesday, May 4, 2011
I am not just another medical chart
So yet another study came along but this is one I like and will incorporate into my doctor interactions.
This new study says that patients who bond with their doctors are more likely to get better and doctors who show hope and optimism have patients who are more likely to get better. While the study focuses on mental health issues the article goes on to add that it is applicable across all medical ailments and diseases.
What does this mean to me? That I will be more active in who my doctors are and treat the first interactions more of interviews - where I am interviewing them - than as blind acceptance of in who ever's office I ended up. A doctor is someone who you (or your insurance) pay for a service. There is no reason to stick with one you don't like or who doesn't listen to you. If you don't like them, find another one.
In the past few years I have mostly gone to new doctors who I have researched and asked questions about. I want ones who will listen to me and not disregard my concerns. I am not just another medical chart to be reviewed and treated - just as I am not just another number at the deli.
The past few weeks I am thinking about the idiotic Dr. B who ignored me about my concerns and my habits and blamed me for blood pressure issues. It turns out since that he was wrong and he did upset me significantly to the point that if I am referred to any other doctors in the near future I will probably be on the defensive side. I am almost at the point of writing to the hospital to complain about him or at least complaining to a patient advocate.
What do I want in a doctor-patient interaction? They don't need to be my friend. I don't need to be able to call them 24/7. I do need to be able to get an appointment if needed within 24-48 hours. I do need to get some follow up when/if diagnosed with something new. I do need to be listened to and not discounted when talking about what bothers me - why I am there. Am I too demanding? I don't think so. I am happy to vote with my feet.
Do doctors understand this? I think sometimes they do and sometimes they don't. This depends on both their bedside manner and their personality as well as size of their ego. Most I think do try to reach out to their patients.
Sometimes patients too need to realize that doctors are not miracle workers. Its a two way street. If you make demands of your doctor they are going to react badly. If you expect your doctor to change your treatment protocol every week just because a new study came along, your expectations may be wrong. A treatment needs to be tested and proven to be put into use. A patient needs to listen to their doctor and follow their instructions. If your doctor tells you to take a prescription, exercise, eat right, etc, yes it is advice but if you don't follow it, you won't get better.
I don't want to be just another medical chart. I want to be a patient who actually works with their doctor to get better
Thursday, April 14, 2011
Stress and Cancer and Families
Cancer is stressful. In fact, its considered that people after diagnosis are often suffering from Post Traumatic Stress Disorder. I can believe it. Cancer is more than stressful, its take your world and turn it upside down and shake out all the little problems in your life.
Any outstanding issues in your life come out to be dealt with - remember your former friend but then somehow your friendship ended but always meant to make up with, well now that you might DIE you have to deal with that. If you are going to DIE its time to write your will and make your final arrangements so that those left behind don't have be stressed themselves. And if you are going to DIE you need a bucket list and to rush around and take care of all the items. And what about a living will, hospice arrangements, etc - because if you are going to DIE you need to take care of them now.
Your spouse sits there and helps as much as they can. But they get stressed too if you are going to DIE, your spouse will be left behind and will have to deal with your will, your death, worry about all the things they never should have said to you, and I can go on.
My point is that at many levels the word 'cancer' means 'death'. The doctor says you have cancer and for a millisecond or longer, you think I'm going to DIE. Then rational minds kick in and say how can we fight this. And your spouse is along for the ride of your life. The patient often gets more attention from the doctors and caregivers because they are the sick one. The spouse gets some support but is stuck on the side lines of the highway to hell.
Catherine Zeta-Jones after coping with her husband's, Michael Douglas, stage IV cancer and treatment is just as stressed if not more than he is. She has just checked herself into a clinic for treatment of bipolar disorder as a result of the stress she went through. I am sure she wants to get her life back into some sort of stable form so she can proceed with her career.
The need for mental treatment after cancer treatment is not limited to the patients. Often the family members need some help as well.
Any outstanding issues in your life come out to be dealt with - remember your former friend but then somehow your friendship ended but always meant to make up with, well now that you might DIE you have to deal with that. If you are going to DIE its time to write your will and make your final arrangements so that those left behind don't have be stressed themselves. And if you are going to DIE you need a bucket list and to rush around and take care of all the items. And what about a living will, hospice arrangements, etc - because if you are going to DIE you need to take care of them now.
Your spouse sits there and helps as much as they can. But they get stressed too if you are going to DIE, your spouse will be left behind and will have to deal with your will, your death, worry about all the things they never should have said to you, and I can go on.
My point is that at many levels the word 'cancer' means 'death'. The doctor says you have cancer and for a millisecond or longer, you think I'm going to DIE. Then rational minds kick in and say how can we fight this. And your spouse is along for the ride of your life. The patient often gets more attention from the doctors and caregivers because they are the sick one. The spouse gets some support but is stuck on the side lines of the highway to hell.
Catherine Zeta-Jones after coping with her husband's, Michael Douglas, stage IV cancer and treatment is just as stressed if not more than he is. She has just checked herself into a clinic for treatment of bipolar disorder as a result of the stress she went through. I am sure she wants to get her life back into some sort of stable form so she can proceed with her career.
The need for mental treatment after cancer treatment is not limited to the patients. Often the family members need some help as well.
Monday, February 28, 2011
Staying close to home
Why travel for medical care? I am not talking about going to another country, but do you really need to go to the big city when you can stay local? Apparently not. This article is an interview with a doctor who is leaving one hospital to lead another where he talks about keeping health care costs down and using local hospitals.
'People use the big tertiary hospitals because the technology is impressive. There are things called gamma knives that astonish me, but most people don’t need that, thank God. Most people need good care, a good caring doctor, a procedure that works and excellent follow-up. Most of those things can happen in a community hospital at much less cost.'
A big fancy hospital with famous patients - senators, movie stars, etc - have higher overhead because all their fancy equipment costs a lot. But for the majority of us, going to the local hospital probably has everything you need. The big fancy hospitals with every technological gizmo invented (and approved by the FDA) have big fancy bills with them.
I go to a nice regional hospital. Or is it a community hospital - I am not entirely sure what the difference is? Its not huge, but its not tiny. Actually it keeps expanding. When I first went there in 1981, it had two wings - east and west. Two renovations/expansions later it has four wings - east, central, west, and southeast. But it is plenty big enough for me. They can offer basically everything I might ever need. If I every get any more cancer cooties (note the technical term) diagnosed in my body, I might want to go to a cancer hospital - Dana Farber is the closest one - for a second opinion.
But frankly I go to the hospital often enough that by driving the extra two miles in the other direction into downtown Boston, my driving time to each appointment would be triple or more the ten minutes it takes me now. Plus I would have add time for finding the rarest of rare in Boston - a parking space for less than $20.
I am very happy with my care at this point. I think my only complaint is that I get so much of it. I would be happier if I was healthier and didn't have to go there as much.
'People use the big tertiary hospitals because the technology is impressive. There are things called gamma knives that astonish me, but most people don’t need that, thank God. Most people need good care, a good caring doctor, a procedure that works and excellent follow-up. Most of those things can happen in a community hospital at much less cost.'
A big fancy hospital with famous patients - senators, movie stars, etc - have higher overhead because all their fancy equipment costs a lot. But for the majority of us, going to the local hospital probably has everything you need. The big fancy hospitals with every technological gizmo invented (and approved by the FDA) have big fancy bills with them.
I go to a nice regional hospital. Or is it a community hospital - I am not entirely sure what the difference is? Its not huge, but its not tiny. Actually it keeps expanding. When I first went there in 1981, it had two wings - east and west. Two renovations/expansions later it has four wings - east, central, west, and southeast. But it is plenty big enough for me. They can offer basically everything I might ever need. If I every get any more cancer cooties (note the technical term) diagnosed in my body, I might want to go to a cancer hospital - Dana Farber is the closest one - for a second opinion.
But frankly I go to the hospital often enough that by driving the extra two miles in the other direction into downtown Boston, my driving time to each appointment would be triple or more the ten minutes it takes me now. Plus I would have add time for finding the rarest of rare in Boston - a parking space for less than $20.
I am very happy with my care at this point. I think my only complaint is that I get so much of it. I would be happier if I was healthier and didn't have to go there as much.
Wednesday, February 23, 2011
Pushing drugs, doing drugs, and feeling better
What a title - may send the DEA after me - but my drugs are all legal. Anyway, I was driving around yesterday (not aimlessly but on my way to a doctor appointment) thinking about my current medications and how they are balanced around each other to keep me pain free, cancer free, and semi-sane/normal.
When I first started down this delightful medical path, I didn't want drugs for anything. I was a advil every six months or so if needed girl, other than the pesky thyroid pills because of that other cancer diagnosis. Then the surgeries caused pain which did go away, but cancer causes stress, chemotherapy causes side effects, blah, blah, blah. I have no idea of how many rounds of antibiotics or other pills I have ingested. After surgery or procedure, they give you a prescription for pain meds that I take until I don't need them any more.
Every six months or so here they have a 'turn in your old prescriptions day' around here. I dutifully go through my little bottles and find the ones I stopped taking a while ago and there is no chance that I will need them again because they expired group and put them in a bag and bring them in. A much better solution than flushing or putting them in the trash. They get destroyed in some environmentally friendly way. The sad thing is I can produce a bag of expired and useless medications every six months.
My doctors put me on medications and then take me off them or tell me to take these until this time and then take these and here are a few extra so you don't run out. Then another doctor says if you are taking this, you shouldn't take that, take these instead. They aren't drug pushers. They are trying to balance my medications. Unfortunately the balance is complicated in that back pain drugs can also work as anti depressants which causes two doctors to battle over which is which. Treating back pain has a quicker up time than treating depression issues. You canjust think of me as the ping pong ball going back and forth, trying to feel better. Currently my back is slightly better, but my tennis elbow is speaking up and my depression meds aren't balanced. Other than that I feel fine. Did I mention how my ankle feels these days?
When I first started down this delightful medical path, I didn't want drugs for anything. I was a advil every six months or so if needed girl, other than the pesky thyroid pills because of that other cancer diagnosis. Then the surgeries caused pain which did go away, but cancer causes stress, chemotherapy causes side effects, blah, blah, blah. I have no idea of how many rounds of antibiotics or other pills I have ingested. After surgery or procedure, they give you a prescription for pain meds that I take until I don't need them any more.
Every six months or so here they have a 'turn in your old prescriptions day' around here. I dutifully go through my little bottles and find the ones I stopped taking a while ago and there is no chance that I will need them again because they expired group and put them in a bag and bring them in. A much better solution than flushing or putting them in the trash. They get destroyed in some environmentally friendly way. The sad thing is I can produce a bag of expired and useless medications every six months.
My doctors put me on medications and then take me off them or tell me to take these until this time and then take these and here are a few extra so you don't run out. Then another doctor says if you are taking this, you shouldn't take that, take these instead. They aren't drug pushers. They are trying to balance my medications. Unfortunately the balance is complicated in that back pain drugs can also work as anti depressants which causes two doctors to battle over which is which. Treating back pain has a quicker up time than treating depression issues. You canjust think of me as the ping pong ball going back and forth, trying to feel better. Currently my back is slightly better, but my tennis elbow is speaking up and my depression meds aren't balanced. Other than that I feel fine. Did I mention how my ankle feels these days?
Thursday, December 30, 2010
A scary medical error
I am not being Chicken Little and saying the sky is falling but I find this quite scary. You go for a medical treatment or receive a medication, you assume they are doing it right. I mean we all hear about medical errors and we know that there is always the possibility that you might wake up with the wrong kidney. There are lots of checks in place and lots of publicity of this. The errors are usually known immediately.
But what about this: you go for a pinpoint radiation treatment, it administers an overdose. You don't feel the symptoms right away but then turn into a vegetable and spend the rest of your life in a nursing home.
One hospital administered the wrong dose for FIVE YEARS!!! before they figured out that the machine was calibrated wrong.
What is wrong here? Lets start with better training for technicians and physicists (I used to work with physicists and just because they are really smart and have lots training, it doesn't mean they know everything - we won't talk about the nerd factory either), better communication from the manufacturers on how to calibrate, many more checks to make sure the right doses are being given.
I think this is a clear statement of just because it can be done, doesn't mean you should jump right in and start offering the treatment without ensuring everyone knows what needs to be done to administer it correctly. Five years of wrong treatments? Eek
But what about this: you go for a pinpoint radiation treatment, it administers an overdose. You don't feel the symptoms right away but then turn into a vegetable and spend the rest of your life in a nursing home.
One hospital administered the wrong dose for FIVE YEARS!!! before they figured out that the machine was calibrated wrong.
What is wrong here? Lets start with better training for technicians and physicists (I used to work with physicists and just because they are really smart and have lots training, it doesn't mean they know everything - we won't talk about the nerd factory either), better communication from the manufacturers on how to calibrate, many more checks to make sure the right doses are being given.
I think this is a clear statement of just because it can be done, doesn't mean you should jump right in and start offering the treatment without ensuring everyone knows what needs to be done to administer it correctly. Five years of wrong treatments? Eek
Tuesday, June 29, 2010
Calling it quits
Let us play pretend for a bit. So you get some bad news from your doctor and you try surgery and chemo and radiation and procedures and all sorts of fun medical adventures. You feel like crap (to use a medical term) and are spending all your time at the hospital. You keep getting more bad news and more fun medical adventures are recommended. You are tired and feel like crap and are spending even more of your time at the hospital. The doctors tell you they can try some more things, you hesitate but agree to more fun medical adventures. Then you find out that the fun stuff is not very successful and your doctors get hesitant, or possibly diligently consulting with colleagues and pouring through medical research to offer you more options. But they tell you they are running out of choices and treatment options. You are stuck in the hospital, not having time to do the things you enjoy. The nurses and doctors know you better than anyone else because you are spending all your time with them. The doctors offer some more options but don't seem as optimistic.
Wait a minute... Isn't it your body and your right to make choices? Yes, it is. Are we medicated to death? Possibly. I read this article and started thinking. Not to be morbid, but I think we need to make our choices ahead of time. Yes I have a health care proxy and my husband and I have had the 'what if' conversation (which is practical and not morbid). But then I realize there is more to calling it quits.
Before the time arrives and you are wrapped up in the emotional mess of bad medical news, isn't it appropriate to think about what you want for quality of life? Do you want to die in a hospital hookedup with tubes and monitors? Or do you want to decide ahead of time that when it gets to a certain stage and you don't have much time left, do you want to spend a last month or week on the ocean with family and friends?
I read the article and now realize I have some more thinking to do. I need to decide when that time happens (in the distant future I assume) where do I want to draw the line and say I'm done with treatment? I'll have to figure this one out but I assume I have a long time to think about this one.
Yesterday was an awful hot day with high humidity. So what did I do? I went for a six mile walk in the sun. It was awful. But we were walking around a lake so we couldn't cut it short. Today I am going to walk and will go for a shorter walk and it won't be as hot so I will be fine.
Yesterday I realized I have 'misplaced' or 'put in a safe place' both my debit card and my Amex card. I called both and neither have been used but I can't find them. I gave up on Amex and requested a new card - which means I will find the old one in another day. I will probably go get another debit card soon... as soon as I run out of cash and need more. Now I am late once again. Grr.
Wait a minute... Isn't it your body and your right to make choices? Yes, it is. Are we medicated to death? Possibly. I read this article and started thinking. Not to be morbid, but I think we need to make our choices ahead of time. Yes I have a health care proxy and my husband and I have had the 'what if' conversation (which is practical and not morbid). But then I realize there is more to calling it quits.
Before the time arrives and you are wrapped up in the emotional mess of bad medical news, isn't it appropriate to think about what you want for quality of life? Do you want to die in a hospital hookedup with tubes and monitors? Or do you want to decide ahead of time that when it gets to a certain stage and you don't have much time left, do you want to spend a last month or week on the ocean with family and friends?
I read the article and now realize I have some more thinking to do. I need to decide when that time happens (in the distant future I assume) where do I want to draw the line and say I'm done with treatment? I'll have to figure this one out but I assume I have a long time to think about this one.
Yesterday was an awful hot day with high humidity. So what did I do? I went for a six mile walk in the sun. It was awful. But we were walking around a lake so we couldn't cut it short. Today I am going to walk and will go for a shorter walk and it won't be as hot so I will be fine.
Yesterday I realized I have 'misplaced' or 'put in a safe place' both my debit card and my Amex card. I called both and neither have been used but I can't find them. I gave up on Amex and requested a new card - which means I will find the old one in another day. I will probably go get another debit card soon... as soon as I run out of cash and need more. Now I am late once again. Grr.
Tuesday, April 13, 2010
Desensitizing to allergens?
There definitely has been an increase in allergens in the world - more toxic chemicals are used more widely than ever before - and more people are showing up allergic. Basically for allergies, we are always told avoidance is the best policy and new chemicals (drugs) are developed to ease the symptoms.
But what if the allergies interfere with the best possible treatment for cancer or another condition? I was told as a child that I was sensitive to penicillin. By sheer luck, I did not receive any for years until in my late 30's, I got a dental infection and was prescribed amoxicillin which resulted in a full body rash and hives (while on a business trip overseas - how fun. NOT!)
Later while in chemo, I discovered an allergy to benadryl (yes the stuff they give you for allergic reactions). During chemo, the protocol is to give you some combination of an anti nausea drug, a steroid to reduce reactions, and sometimes an anti-allergy medication (Benadryl in this case) to reduce reactions to the very strong chemo drugs. Well, I had a reaction for about 30 minutes and was told never to take Benadryl again. But I was not allergic to any of the chemo drugs.
But what if a patient is allergic to the best possible treatment for their illness? What then? Do you suffer through the allergic reactions (and hope you are okay) or do you go to a potentially less effective treatment? Well the new theory is densensitization of patients to drugs so they can get the best possible treatments.
Through my cancer treatment, I always wanted the option with the best possible numbers associated with it. If I was allergic to one of the drugs, I think I would want to try this new option to have the best possible odds. Consider it the same as driving an extra hour to get to the best hospital. Why not?
But what if the allergies interfere with the best possible treatment for cancer or another condition? I was told as a child that I was sensitive to penicillin. By sheer luck, I did not receive any for years until in my late 30's, I got a dental infection and was prescribed amoxicillin which resulted in a full body rash and hives (while on a business trip overseas - how fun. NOT!)
Later while in chemo, I discovered an allergy to benadryl (yes the stuff they give you for allergic reactions). During chemo, the protocol is to give you some combination of an anti nausea drug, a steroid to reduce reactions, and sometimes an anti-allergy medication (Benadryl in this case) to reduce reactions to the very strong chemo drugs. Well, I had a reaction for about 30 minutes and was told never to take Benadryl again. But I was not allergic to any of the chemo drugs.
But what if a patient is allergic to the best possible treatment for their illness? What then? Do you suffer through the allergic reactions (and hope you are okay) or do you go to a potentially less effective treatment? Well the new theory is densensitization of patients to drugs so they can get the best possible treatments.
Through my cancer treatment, I always wanted the option with the best possible numbers associated with it. If I was allergic to one of the drugs, I think I would want to try this new option to have the best possible odds. Consider it the same as driving an extra hour to get to the best hospital. Why not?
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