With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.
I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.
Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.
My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.
My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations
When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.
Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.
The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping - have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so. And if there are repeated requests over and over the patient's stress mounts at an already stressful time.
A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.
Showing posts with label being a patient. Show all posts
Showing posts with label being a patient. Show all posts
Just because they tell to you doesn't mean you have to
Taking synthetic thyroid hormone pills are a pain in the neck (literally). Its only a little pill but it comes with all kinds of rules.
You also can't switch from brand to brand or even to generic. Some people do not respond well to different brands. There are all kinds of issues here. You can read about them here if you really want.
Thirty years ago when I started taking synthetic thyroid, they didn't tell us all these things because they didn't know. Now they keep adding more and more restrictions.
My bottle comes labeled with all of this:
I take my pill (or half pill - my dosage is a full pill every day except Mondays and Fridays where I take half a pill) first thing in the morning and wait an hour before I eat anything. I do have my coffee with it but that's it. (You get big points in the world of synthetic thyroid hormones just for consistency and taking your pill the same way every day.) I take the rest of my giant pile of pills at the end of the day except the one in the middle of the day that I always forget.
But...
I have a friend who doesn't have a thyroid either and she takes all her pills - synthetic thyroid, vitamins and prescriptions - together during the day when ever she remembers. And she is just fine.
So just because they tell me to, doesn't mean I have to.
- You have to take it one hour before eating or four hours after eating.
- You have to wait at least four hours before taking vitamins, minerals - especially calcium
- You need to take it by itself basically.
- The pills are sensitive to heat so you shouldn't have them shipped to you in summer.
You also can't switch from brand to brand or even to generic. Some people do not respond well to different brands. There are all kinds of issues here. You can read about them here if you really want.
Thirty years ago when I started taking synthetic thyroid, they didn't tell us all these things because they didn't know. Now they keep adding more and more restrictions.
My bottle comes labeled with all of this:
- Take this medicine on an empty stomach. Preferably 1/2 to 1 hour before breakfast.
- Take this medicine with a full glass of water
- Take this medication at least four hours before taking antacids, iron, or vitamin/mineral supplements.
- Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. (This last one is written twice in tiny, tiny print. They could have written it once in bigger type.)
I take my pill (or half pill - my dosage is a full pill every day except Mondays and Fridays where I take half a pill) first thing in the morning and wait an hour before I eat anything. I do have my coffee with it but that's it. (You get big points in the world of synthetic thyroid hormones just for consistency and taking your pill the same way every day.) I take the rest of my giant pile of pills at the end of the day except the one in the middle of the day that I always forget.
But...
I have a friend who doesn't have a thyroid either and she takes all her pills - synthetic thyroid, vitamins and prescriptions - together during the day when ever she remembers. And she is just fine.
So just because they tell me to, doesn't mean I have to.
Privacy
Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
Boomerang day
Yesterday morning my plan was to go meet with my new rhematologist, then to work, and then to attempt the gym again. Life never goes as planned.
I could barely drag myself out of bed as I was so tired. I went to see my rheumatologist who is new to me. She is very nice and had a bunch of good suggestions. She was also very good at explaining things to me. I think this will work out in the long run. I go back and see her in three months.
My problem is I have been on injection methotrexate for barely three months and am now skipping doses because I am on antibiotics. With methotrexate, you need to build up a certain blood level to get the most medicinal effects from it. If you have been on it for a few years and need to go off it for a few weeks, its no big deal as your blood levels are ample. But if you are like me and only on it for a short period of time, I will lose some of the benefit I have built up and may have issues in the meantime. I can't go back on it until the middle of next week.
Then I got my blood work done and left to go to work. No big deal. After leaving the hospital, I called my PCP's office to see what it took to get a note for the airline because I can't fly this weekend as planned - both ears are clogged. I was on hold driving to work (with headset) at 1015am. Finally, someone came back on the phone and said can you come in at 1115am? Otherwise, it would be Thursday afternoon.
So I made a (legal) U-turn, made a quick stop at Target, and went back to the hospital to see my PCP's nurse practitioner. I got my note for the airline and finally got to work at 1215 pm. That was a lot of driving.
I did get to the gym but only for a short workout.
Today's goal is for a calmer day with less driving.
I could barely drag myself out of bed as I was so tired. I went to see my rheumatologist who is new to me. She is very nice and had a bunch of good suggestions. She was also very good at explaining things to me. I think this will work out in the long run. I go back and see her in three months.
My problem is I have been on injection methotrexate for barely three months and am now skipping doses because I am on antibiotics. With methotrexate, you need to build up a certain blood level to get the most medicinal effects from it. If you have been on it for a few years and need to go off it for a few weeks, its no big deal as your blood levels are ample. But if you are like me and only on it for a short period of time, I will lose some of the benefit I have built up and may have issues in the meantime. I can't go back on it until the middle of next week.
Then I got my blood work done and left to go to work. No big deal. After leaving the hospital, I called my PCP's office to see what it took to get a note for the airline because I can't fly this weekend as planned - both ears are clogged. I was on hold driving to work (with headset) at 1015am. Finally, someone came back on the phone and said can you come in at 1115am? Otherwise, it would be Thursday afternoon.
So I made a (legal) U-turn, made a quick stop at Target, and went back to the hospital to see my PCP's nurse practitioner. I got my note for the airline and finally got to work at 1215 pm. That was a lot of driving.
I did get to the gym but only for a short workout.
Today's goal is for a calmer day with less driving.
I hate these stories
I hate these stories about the tragedy befalling someone because of missed medical tests. They are 'tragic' and the media picks them up and tells us about the tragedy and this poor person is going to die.
This is one about a woman in England who had breast cancer and now has brain tumors and was told that she has weeks to live. The media tries to blame this one on the health care system. I'm sorry and its a tragic story but still the patient should have done more on her part as well.
If you go to the doctor and they tell you its whatever - arthritis - and gives you medication. You take the medication and it doesn't work, you need to go back to the doctor and say this isn't working and demand more care. If its still a problem keep going back to the doctor until you are feeling better. If you still are refused care, find another doctor. You can't sit there and let them tell you its nothing if its something that gets worse.
I'm such a patient patient, I would be hanging out in my doctor's waiting room and getting more opinions to find out what is wrong.
Being a patient is a two way street. If you go to the doctor, you need to listen to their instructions and avoid them at your peril. If you follow their instructions, you should expect to feel better in the long run. On the other hand if you go to the doctor and follow their instructions and don't get better or achieve the expected results, speak up and demand more. Don't sit back in pain or discomfort and let them tell you its nothing.
This is one about a woman in England who had breast cancer and now has brain tumors and was told that she has weeks to live. The media tries to blame this one on the health care system. I'm sorry and its a tragic story but still the patient should have done more on her part as well.
If you go to the doctor and they tell you its whatever - arthritis - and gives you medication. You take the medication and it doesn't work, you need to go back to the doctor and say this isn't working and demand more care. If its still a problem keep going back to the doctor until you are feeling better. If you still are refused care, find another doctor. You can't sit there and let them tell you its nothing if its something that gets worse.
I'm such a patient patient, I would be hanging out in my doctor's waiting room and getting more opinions to find out what is wrong.
Being a patient is a two way street. If you go to the doctor, you need to listen to their instructions and avoid them at your peril. If you follow their instructions, you should expect to feel better in the long run. On the other hand if you go to the doctor and follow their instructions and don't get better or achieve the expected results, speak up and demand more. Don't sit back in pain or discomfort and let them tell you its nothing.
Off to play doctor
No, not like that! Get your minds out of the gutter!
I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.
My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up by two weeks because of the pain.
My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.
But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."
I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.
I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.
My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up by two weeks because of the pain.
My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.
But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."
I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.
On being cynical or jaded...
Yesterday I thought my blog post was a bit cynical. Someone on Facebook said it was a bit jaded maybe but understandable.
My health keeps giving me hits - if its not one thing, its another. I spend more time rearranging my life for doctor appointments and at those appointments than anything else. By the end of this week, I will have had 18 medical appointments in the first 19 weeks of the year. I am down to an expected rate of about 50 doctor appointments for the year. This is the lowest since 2006.
My therapist (of course I need a therapist with all these medical issues) tells me I am in chronic mourning for my health because something else always seems to want to cause problems. (Yesterday my knee started popping when I walked up and down stairs but I am going to ignore that one for at least a month.)
I don't think I deserve any special treatment because of my ailments. I do struggle with writing a blog about breast cancer when its not really much about breast cancer right now. But I do have my annual mammogram along with some other 'fun' tests this week (which I am ignoring for now because that is all my inner child can handle). I'll fill you in on the details sometime in the future.
My cynicism on my health comes out as I am as healthy as a horse on the way to the glue factory. I work with a bunch of people who have no idea of any health ailments that I have had longer than the four years I have worked there. But they still think I am the least healthy employee.
I just got an email from RealAge.com telling me I should think myself young. Yeah right.
My health keeps giving me hits - if its not one thing, its another. I spend more time rearranging my life for doctor appointments and at those appointments than anything else. By the end of this week, I will have had 18 medical appointments in the first 19 weeks of the year. I am down to an expected rate of about 50 doctor appointments for the year. This is the lowest since 2006.
My therapist (of course I need a therapist with all these medical issues) tells me I am in chronic mourning for my health because something else always seems to want to cause problems. (Yesterday my knee started popping when I walked up and down stairs but I am going to ignore that one for at least a month.)
I don't think I deserve any special treatment because of my ailments. I do struggle with writing a blog about breast cancer when its not really much about breast cancer right now. But I do have my annual mammogram along with some other 'fun' tests this week (which I am ignoring for now because that is all my inner child can handle). I'll fill you in on the details sometime in the future.
My cynicism on my health comes out as I am as healthy as a horse on the way to the glue factory. I work with a bunch of people who have no idea of any health ailments that I have had longer than the four years I have worked there. But they still think I am the least healthy employee.
I just got an email from RealAge.com telling me I should think myself young. Yeah right.
Now its my back
Lets return to the 'if its not one thing, its another' category. My back is being very bad lately. When I say bad it is causing me pain of the kind that makes it difficult to remain vertical for any length of time. That makes it hard for me to do things like walking around, cooking meals, cleaning, emptying the dishwasher, going to the grocery store, going to work, and feeding the cat among others. Nothing much. It also tends to hurt when I am sitting or lying down.
What can I do that does not cause me pain. I'm thinking. I'll get back to you when I come up with something.
I think what has happened is that the last treatment to my back has worn off. I have had these fun treatments where they basically stick heated needles in my back between the bones and kill off the irritated nerves which are causing pain. They are irritated because they are being squished as a result of my degenerating disks.
The treatments work for at least a year or so and can be repeated. Even though the nerves are killed off they do grow back but usually less so they cause less pain.
The problem is I am not scheduled to see my doctor until the end of May. I can try to get an appointment sooner but his schedule is usually very tight. Then I will have to wait to get the treatment scheduled which can take another 4-6 weeks.
I'm still thinking of something I can do without pain.
What can I do that does not cause me pain. I'm thinking. I'll get back to you when I come up with something.
I think what has happened is that the last treatment to my back has worn off. I have had these fun treatments where they basically stick heated needles in my back between the bones and kill off the irritated nerves which are causing pain. They are irritated because they are being squished as a result of my degenerating disks.
The treatments work for at least a year or so and can be repeated. Even though the nerves are killed off they do grow back but usually less so they cause less pain.
The problem is I am not scheduled to see my doctor until the end of May. I can try to get an appointment sooner but his schedule is usually very tight. Then I will have to wait to get the treatment scheduled which can take another 4-6 weeks.
I'm still thinking of something I can do without pain.
Why don't have I have a patient navigator?
I need a patient navigator. The idea behind a patient navigator is to help newly diagnosed people deal with the mysteries of all these new doctors, treatments, and help them through the process by being there as the go-to person. Its part of the new patient centered care which is a great idea.
An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).
My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.
The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.
If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)
What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.
So somewhere there are 18 other people who might be like me.
The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.
This is why I don't have a patient navigator.
I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.
*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03% so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.
An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).
My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.
The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.
If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)
What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.
So somewhere there are 18 other people who might be like me.
The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.
This is why I don't have a patient navigator.
I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.
*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03% so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.
Too many screening tools
Now the big 'hoo haw' in the medical world is preventative care. You know they want people to have annual physicals and get certain screening tests - mammograms, PSA, and colonoscopies. I personally think a bit of prevention goes a long way.
But we can't focus on that and test everyone to death (bad choice of words there?) can we? I mean its bad enough that I go to my PCP for a physical and I get sent for blood tests. I used to get annual chest x-rays because I have had a thingy in my lungs but after thirty years of annual commemorative pictures, they have changed protocols and said I no longer need those.
I also still get annual visits with the radiation oncologist and breast surgeon, three times a year with the medical oncologist, twice a year with the endocrinologist and four times a year with someone in rheumatology which is more than the average bear. Because with my medical history, they need to be sure but I am not so sure about the rest of the population. How many tests do they need? I question this.
Last year medical organizations came out about tests we generally do not need. I blogged about these somewhere in my blog but can't find them... I have to get to work, I don't have hours to dig through my blog so trust me it is there.
Now medical research is busy adding new screening tests. Some British researchers have found a link between lifestyle and developing rheumatoid arthritis. They found:
Their recommendation, as a result, is to develop a screening tool to identify patients with a higher risk and who could be given advice on how to reduce their risk. (I'm not signed up for any special social class so how would I know if I am at a lower risk?) Not helpful.
So let me review this. The movement these days is to reduce unnecessary tests and research is creating more tests. Sounds like a vast conspiracy to me.
But we can't focus on that and test everyone to death (bad choice of words there?) can we? I mean its bad enough that I go to my PCP for a physical and I get sent for blood tests. I used to get annual chest x-rays because I have had a thingy in my lungs but after thirty years of annual commemorative pictures, they have changed protocols and said I no longer need those.
I also still get annual visits with the radiation oncologist and breast surgeon, three times a year with the medical oncologist, twice a year with the endocrinologist and four times a year with someone in rheumatology which is more than the average bear. Because with my medical history, they need to be sure but I am not so sure about the rest of the population. How many tests do they need? I question this.
Last year medical organizations came out about tests we generally do not need. I blogged about these somewhere in my blog but can't find them... I have to get to work, I don't have hours to dig through my blog so trust me it is there.
Now medical research is busy adding new screening tests. Some British researchers have found a link between lifestyle and developing rheumatoid arthritis. They found:
they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
"... they found that smoking, obesity and having diabetes, all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease."Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
Their recommendation, as a result, is to develop a screening tool to identify patients with a higher risk and who could be given advice on how to reduce their risk. (I'm not signed up for any special social class so how would I know if I am at a lower risk?) Not helpful.
So let me review this. The movement these days is to reduce unnecessary tests and research is creating more tests. Sounds like a vast conspiracy to me.
they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp
Those sneaky hospital costs
A new hot button issue in the world of medical treatment are the sneak hospital costs. Hospitals and insurance companies have negotiated these rates and traditionally they have been covered by insurers. But as patients switch to higher deductible policies they are bearing the brunt of these costs.
On the hospitals side, they claim they warn patients by putting signs up through the facilities where these are charged so patients are warned. But they are not told the amounts until they receive the bill. They also say these fees pay for things like twenty four hour ER stays, research, and teaching.
Medicare allows doctors to charge overhead fees for work performed in buildings owned by hospitals. So I guess this is automatically done for us non Medicare patients.
On their side, insurance companies do negotiate with the hospitals but say they can't change the way hospitals bill. (Sounds like someone might be trying to pass the buck here.)
I can understand hospitals have costs that are not included in the fee to pay to see the doctor. They are in big buildings and they provide additional services than just doctor visits. They are also trying to cover their research costs, etc. While hospitals are there to treat patients who pay the fees to get care, you can't tell me they do not get grants to pay for research which should cover the research costs?
If we get to research costs again, aren't patients also paying for the research costs for the pharma companies by receiving really expensive brand name drugs as well?
I think that this is clearly another issue that shows how badly our healthcare system is messed up and how much more change is needed.
On the hospitals side, they claim they warn patients by putting signs up through the facilities where these are charged so patients are warned. But they are not told the amounts until they receive the bill. They also say these fees pay for things like twenty four hour ER stays, research, and teaching.
Medicare allows doctors to charge overhead fees for work performed in buildings owned by hospitals. So I guess this is automatically done for us non Medicare patients.
On their side, insurance companies do negotiate with the hospitals but say they can't change the way hospitals bill. (Sounds like someone might be trying to pass the buck here.)
I can understand hospitals have costs that are not included in the fee to pay to see the doctor. They are in big buildings and they provide additional services than just doctor visits. They are also trying to cover their research costs, etc. While hospitals are there to treat patients who pay the fees to get care, you can't tell me they do not get grants to pay for research which should cover the research costs?
If we get to research costs again, aren't patients also paying for the research costs for the pharma companies by receiving really expensive brand name drugs as well?
I think that this is clearly another issue that shows how badly our healthcare system is messed up and how much more change is needed.
The backstory
We have all see this video that went viral about six months ago. At the hematology clinic in a Seattle hospital, they rocked it out to Kelly Clarkson's "Stronger". There are all sorts of videos that go viral. But we usually never really know why they were made, who made them, or anything else. They are just a video we share and laugh at or with.
But this time I found out the backstory to this one. A hockey playing college student spent six months in chemo and helped make the first video.
I think knowing his story gives even more power to the video. We know the context that he was a patient as well and worked with the children in the hospital with him to make the video. There are some real smiles there. My favorite is the little boy with the missing front teeth.
You can't talk the talk, if you haven't walked the walk.
While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.
A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.
One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.
I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.
Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:
"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.
“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”
Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."
So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.
A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.
One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.
I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.
Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:
"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.
“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”
Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."
So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.
Are we empowered yet?
This has been a hot topic for years now, patient empowerment. Do you really know what it is? I found a definition on Navigating Cancer this says:
"Patient Empowerment involves active participation by the patient working in partnership with a healthcare team to receive the best care.
Patient empowerment begins with leaning about one’s own illness or condition, and participating in treatment decisions. It continues as a process, first by keeping a full and comprehensive record of one’s own medical history. Diagnosis, treatments, and medications are tracked by the patient, as well as symptoms and treatment side effects.
Through the process of patient empowerment, patients openly communicate with their healthcare team, contributing to the whole picture and individualizing care. In doing so, physicians are encouraged and enabled to provide optimal care in partnership with their patients."
I think I became empowered years ago. Back in the 1980s when I was younger, I didn't ask as many questions but you can be sure by the 1990s I was good at asking questions and learning. By the mid 2000s, I was on top of it because I had my friends, the internet and Dr. Google.
I now have rules for myself that I think should apply to everyone:
"Patient Empowerment involves active participation by the patient working in partnership with a healthcare team to receive the best care.
Patient empowerment begins with leaning about one’s own illness or condition, and participating in treatment decisions. It continues as a process, first by keeping a full and comprehensive record of one’s own medical history. Diagnosis, treatments, and medications are tracked by the patient, as well as symptoms and treatment side effects.
Through the process of patient empowerment, patients openly communicate with their healthcare team, contributing to the whole picture and individualizing care. In doing so, physicians are encouraged and enabled to provide optimal care in partnership with their patients."
I think I became empowered years ago. Back in the 1980s when I was younger, I didn't ask as many questions but you can be sure by the 1990s I was good at asking questions and learning. By the mid 2000s, I was on top of it because I had my friends, the internet and Dr. Google.
I now have rules for myself that I think should apply to everyone:
- You can't have an ailment unless you can spell, pronounce, and define it.
- You can't be on a medication without being able to spell, pronounce it, and understand the big things it does, why you are on the dose you are, and what are the main side effects of which to be concerned.
- You must be able to talk to your doctors about what you have and how you are doing and not blindly follow their advice like a lemming.
- Finally, you must be comfortable with your treatment plan.
Dealing with health problems
With a nasty medical diagnosis, such as cancer, chronic illness or pain, one is left with a few questions which a medical professional cannot answer. You get to figure them out for yourself because you have instantly received an advanced degree in being human along with your diagnosis. There are five key questions to grapple with. I did not make this up I stole borrowed from the RA Guy and from here. (I like the RA Guy, he gives lots of good advice to me.)
The questions are:
1. Do we talk openly about our health problems or keep them private?
I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."
There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.
However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.
2. Do we ignore a new symptom or do we call our doctor?
That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.
3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.
4. Do we push our bodies to the limit or do we play it safe?
That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.
5. Should we fight aggressively to retain our health or should we accept our fate?
There is always hope. Never give up! I can't say anything else on this.
The questions are:
1. Do we talk openly about our health problems or keep them private?
I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."
There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.
However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.
2. Do we ignore a new symptom or do we call our doctor?
That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.
3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.
4. Do we push our bodies to the limit or do we play it safe?
That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.
5. Should we fight aggressively to retain our health or should we accept our fate?
There is always hope. Never give up! I can't say anything else on this.
Humor and cancer
I know Lorri who lost a leg to cancer and does a stand up routine about the shark.... Because its funnier than cancer.
I know lots of women with breast cancer who have a group on Facebook called 'Humor is the best medicine' and are always looking for the bright side of things.
This morning a Google alert brought me a link to a Huffington Post Blog about a new cartoonist, Kate Matthews, who has just published "The Little Pink Book of (Mostly) Cancer Cartoons (In Color)!". So of course I had to do some research (even though its early in the day) and found some more info on her, including the fact that she is working on a second book.
Here are some of my first favorites. I am sure I will find more...
If you aren't laughing or at least smiling, you might need to think about therapy.
Coping, cooperating, and crankiness
I have had enough of serious blog posts on financial stuff and now am back to my normal (whatever that may be) level of zaniness in the crazy world of my health.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to thedamn pain patches. When I took off the patch, I had a perfect rectangle of rash which lined up exactly with the patch's adhesive. I called my doctors office again and asked them what were my options and was told to either try going with out the patches (which doesn't work unless I want to live on pain pills) or putting cortisone cream on my skin ahead of time to prevent the reaction.
I waited for thedamn rash to go away and tried again with the cortisone lotion. So far its working. Then another prescription showed up in the mail with its paltry $95 co-pay for one month of patches. And a note that said state law prevents them from sending more than 30 days at a time. I called the pharmacy again and was told it was by law but they weren't sure if why I had received 90 day supply of the 5mcg patches. I called my doctor's office again and asked for the 5mcg dose in a 90 day supply. Then I received another email saying a new prescription had been processed and will be sent to me. All I know is that it will have a $95 co-pay (that would be #3 this month) but I hope its for 3 months of the right patches that won't give me a rash.
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to the
I waited for the
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
The Cost of Cancer Care, Part 2
Cost is now becoming a significant factor in people's cancer treatment decisions - something that should not be happening.
In the past decades, and more significantly in recent years, there have been many developments in cancer treatment. We hear talk about individualized medicine, new treatments which add months to stage IV cancer patients' lives, and more. But we rarely or never hear about the costs. I think of it as the silent side of treatment.
Often these new treatments costs tens of thousands of dollars or more for a single year of treatment with a single dose coming in at the multi-thousand level. What is wrong with this picture? Lots. Why should a patient make a decision on their life because their cancer treatment which could extend their life is out of their price range? Please do not suggest the patients ask for assistance from the pharmaceutical companies because that is not always available.
See this example from an article on CancerNetwork.com, titled "The Cost of Cancer Care, Part I":
"Three years ago, I counseled a patient after a gastrointestinal stromal tumor had been resected from his stomach. I was pleased to be able to tell him that imatinib (Drug information on imatinib) (Gleevec), a drug very well tolerated by most patients, would meaningfully reduce his risk of recurrence. Later, we learned that his out-of-pocket expense under his Medicare Part D plan would be several thousands of dollars for a year of treatment. The patient decided the expense was too onerous and that he would forgo treatment. Patient assistance programs are often limited for Medicare beneficiaries, and none could be secured. I pressed to ascertain whether cost was his sole concern, or if there was another unspoken reason for his resistance to proceed with treatment. There was not; his decision was purely due to cost."
There have been many significant advances in cancer research in recent years including a greater understanding of the biologic side of the disease. The research and FDA approvals can take over a decade to complete. Companies are then offered patent protection for 17 years (or something close to that as my chemo brain fails to recall the exact number) to protect their pricing from competition. Costs in research have escalated creating high drug costs. Other contributing factors are:
The ensuing problem is that costs are high for the patients, insurance companies have high copayments for new non-generic/non-preferred medications. There is a switch to oral treatments which are covered by pharmacy benefits. A chemotherapy infusion may be covered by a $50 copay but an oral chemo in pill form might have a several thousand dollar copay. Its easier on the patient than going to the hospital but much tougher on their wallet. But research has helped saved many lives. There are more gains visible in the coming years as well but at what price?
"These gains have not come without a price. Research and development is expensive. Patients who survive longer under active therapy generally receive more intense overall treatment; this includes not just the therapy itself but also the radiographic and laboratory surveillance necessary to monitor ongoing treatment response and toxicity. While we strive for the development of more effective, less toxic therapies, this progress may be transforming into a painful paradox: the more we advance scientifically, the more constrained we become economically."
So how do we progress and allow advanced treatments, longer lives, and containable costs? That will be part of my next post.
[This is something new for me to have a series looking at a particular issue. As my personal cancer story becomes more of a maintenance factor and a new lifestyle with my other newer ailments, you may see more of these posts in series on differing topics but always ailment related.]
In the past decades, and more significantly in recent years, there have been many developments in cancer treatment. We hear talk about individualized medicine, new treatments which add months to stage IV cancer patients' lives, and more. But we rarely or never hear about the costs. I think of it as the silent side of treatment.
Often these new treatments costs tens of thousands of dollars or more for a single year of treatment with a single dose coming in at the multi-thousand level. What is wrong with this picture? Lots. Why should a patient make a decision on their life because their cancer treatment which could extend their life is out of their price range? Please do not suggest the patients ask for assistance from the pharmaceutical companies because that is not always available.
See this example from an article on CancerNetwork.com, titled "The Cost of Cancer Care, Part I":
"Three years ago, I counseled a patient after a gastrointestinal stromal tumor had been resected from his stomach. I was pleased to be able to tell him that imatinib (Drug information on imatinib) (Gleevec), a drug very well tolerated by most patients, would meaningfully reduce his risk of recurrence. Later, we learned that his out-of-pocket expense under his Medicare Part D plan would be several thousands of dollars for a year of treatment. The patient decided the expense was too onerous and that he would forgo treatment. Patient assistance programs are often limited for Medicare beneficiaries, and none could be secured. I pressed to ascertain whether cost was his sole concern, or if there was another unspoken reason for his resistance to proceed with treatment. There was not; his decision was purely due to cost."
There have been many significant advances in cancer research in recent years including a greater understanding of the biologic side of the disease. The research and FDA approvals can take over a decade to complete. Companies are then offered patent protection for 17 years (or something close to that as my chemo brain fails to recall the exact number) to protect their pricing from competition. Costs in research have escalated creating high drug costs. Other contributing factors are:
The ensuing problem is that costs are high for the patients, insurance companies have high copayments for new non-generic/non-preferred medications. There is a switch to oral treatments which are covered by pharmacy benefits. A chemotherapy infusion may be covered by a $50 copay but an oral chemo in pill form might have a several thousand dollar copay. Its easier on the patient than going to the hospital but much tougher on their wallet. But research has helped saved many lives. There are more gains visible in the coming years as well but at what price?
"These gains have not come without a price. Research and development is expensive. Patients who survive longer under active therapy generally receive more intense overall treatment; this includes not just the therapy itself but also the radiographic and laboratory surveillance necessary to monitor ongoing treatment response and toxicity. While we strive for the development of more effective, less toxic therapies, this progress may be transforming into a painful paradox: the more we advance scientifically, the more constrained we become economically."
So how do we progress and allow advanced treatments, longer lives, and containable costs? That will be part of my next post.
[This is something new for me to have a series looking at a particular issue. As my personal cancer story becomes more of a maintenance factor and a new lifestyle with my other newer ailments, you may see more of these posts in series on differing topics but always ailment related.]
Cancer five times
As a cancer patient, what is the worst thing we fear? Being told we have a recurrence or another cancer. So what if between the ages of 29 and 40 something you were told you had cancer five different times? Meet Chef Eric LeVine. He has done this.
I saw him on the Food Network's Chopped a while back and heard him say he had cancer five times. I thought it was significant at the time but not how significant. If you think about it, how many people do you know that have had cancer five times? I spoke at a local senior center last year and a gentleman who had to be in his mid 80's said he had had cancer five times. But he was probably twice the age of Chef LeVine. Its not a common thing.
So Chef LeVine has turned it around and tries to pay it forward by helping family members cope.
"So I realized that the best way for me to use this knowledge - my experience - was to pay it forward. Not with cancer patients, but with their families - teaching them how they can help their family member, the cancer patient."
He talks about people who call constantly 'how are you doing?' and what a drag it is for the patient. It is a constant reminder about cancer and not helping you avoid thinking about it. (Its almost as bad as the people who ask you why you aren't getting the same treatment as their cousin's neighbor's dog walker's hair dresser's uncle who had a different cancer 20 years ago.)
One recommendation I do disagree with him is yes talk to the cancer patient about the crap going on in your life. I would much rather hear someone tell me about their witchy boss, or idiot co-worker, or evil in laws, or annoying children/neighbors, etc than to have them ask me how I am feeling.
However he has been through the cancer roller coaster five times and is still here. I wouldn't want to be in his shoes but he is still here which is the really important part. When I am next in New Jersey, I will make an effort to eat in his restaurant and maybe even meet him.
The Doctor Shortage
As baby boomers (of which I am one even though I am only 37) age, they need more care. Doctors are also aging out and retiring or working part time. Some doctors are leaving practice for research or other positions where they do not have to worry about malpractice lawsuits. Medical schools are not producing enough residents to fill the void. The prediction is a shortage of 90,000 doctors in the next 8 years.
If you compound this with healthcare reform where more people will be insured and seeking medical care, who is going to care for them? Granted there are provisions for medical training as part of health care reform to produce more doctors. And you do not need a physician to be your primary care, it could also be a nurse practitioner or other trained person. But sometimes you need a doctor.
It doesn't seem like a big deal until you are trying to see your physician and you are told they are booking out 3-6 months. Then the reality sets in.
I have many doctors (in case you hadn't noticed). They are actually very good about getting me in. The way it usually works, is when I see them, we decide when I will next see them and schedule the visit for three month follow ups (if I'm lucky). My rheumatologist is impossible to get into see in less than two months. But she will call and help me by phone if needed.
Where I am treated they are pretty good about getting patients in to see their primary care in a few days or any doctor on the same day. This is to avoid trips to the ER. They also have a walk in clinic (if you don't mind waiting in line) on a first come first served basis. Some specialists can take a little longer but you can call and ask for cancellations regularly.
However as a patient, we need to be aware of this looming problem of lack of doctors. What are you going to do if you wake up one day and can't move, or have shooting pains, or a stroke or something? If you work on it now and say 'what can I do in case I have this problem?' there may be ways to avoid it.
Granted we do not know if we are going to need a cardiac specialist or neurosurgeon or whatever in six months. But we can look at how we structure our care now. Is your care disjointed - with one doctor here, another there, and another elsewhere? If you need a specialist where is your doctor most likely to refer you? To a doctor in the same building or to a hospital 30 miles away? How easy is it to get to see a doctor there?
Again as part of being a patient, we need to manage our care and manage up to make sure there are treatment options available as we age and our care gets more and more complicated.
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