I feel a little better today after talking to my oncologist and my neurosurgeon yesterday.
Basically the numbness that I felt both Saturday and Sunday are just par for the cancer course I'm on, and neither was overly worried about them.
Saturday mid-morning suddenly my right hand went kind of numb and then the right side of my face followed. Sunday mid-morning the left side of my neck went numb but that did not spread beyond that point. In both cases things cleared up in about 30-minutes.
The oncologist asked me a lot of questions. When he discovered that I was cutting back on my steroid dose, he told me to go back to what I was taking before - one .75 mg pill every morning. He told me that even with small lesions in the brain some wacky things can happen. But he assured me that with the small size of the lesions (none of 2 mm) and no signs of swelling or bleeding on the scans, that nothing serious would occur.
The neurologist had a nurse get back to me and he recommended that I get a complete cardio exam from my primary physician. He doesn't know myself or my case well enough yet. It's not that. I've gone down that road before.
As the oncologist said, with activity in the brain little quirky things can occur. Also after being on chemo for over three-years now (a remarkable feat in itself), something known as neuropathy can occur, which is a nervous system disorder caused by all the chemotherapy drugs.
So I'm feeling better just talking to the doctors about it. I'm going to be careful not to overextend myself too much until it's Gamma Knife treatment time in a couple weeks.
I did have a good laugh though yesterday.
We have a locally owned pharmacy that is great, and they even deliver. One of two older gentleman always delivers our drugs here. I've noticed that when I answer the door the transaction is quickly wrapped up and the delivery man is on his way. But when Barb answers the door, they always stay and talk Barb's ear off for five or ten minutes.
I can't blame them. I'd rather talk to Barb than me.
But interestingly enough, the delivery man asked Barb yesterday if that was her son who sometimes answers the door.
LOL LOL LOL
Tuesday, June 9, 2009
Monday, June 8, 2009
Checking Things Out
One of the things that is pretty special about my oncologist is the simple fact that he gave me his cell phone number. That may not seem like much. But almost all doctors I have interacted with prefer that patients do not call them. Most doctors want to see patients.
As my primary physician explained to me (and he is one who will take phone calls), "That's the way the business works. You can't charge someone unless they come into the office."
I consider having my oncologist's cell phone number a privilege, and I am careful not to abuse that privilege. In the many months that I have had his number I've used it only twice.
I am considering calling him this morning though.
Over the weekend I had two odd little incidents. Parts of my body went numb, and felt like they went to sleep. I've had this happend to me before in months previous. But I never had it happen on back to back days before, so I'm slightly concerned about it.
On Saturday, around mid-morning, suddenly my right hand went numb. I still had full movement, full control and coordination, it just went numb. A few minutes later the right side of my face went numb as well, including the right side of my mouth and the right side of my tongue. It all lasted no more than 30-minutes. It then went away and I was fine the rest of the day.
On Sunday I woke up with a stiff spot in the left side of my neck. It was no big deal. It just felt like I slept a little strange. Again around mid-morning suddenly the left side of my neck went numb. It lasted about 30 minutes again and then cleared and I was fine after that for the rest of the day.
This kind of thing has happened to me before several times since the beginning of the year. Typically it starts in the right or left hand, then goes to the right or left side of the face. It always goes away quickly. It's very random. It always drew my attention quite a bit but I had never made anything of it since it happened so rarely.
I've gotten use of all the weird things that can go on when you're actively using chemotherapy to attack the cancer within the body. There always seems to be little wars going on inside, here one day, over there the next day. During my last visit the doctor asked me if I had any pain. I told him I have the "pain du jour," a different pain in a different place every day. But it's not any pain with a direct relation to cancer growth.
I wouldn't be surprised at all to learn that my recent episodes of numbness are caused by the chemotherapy. The chemo can mess you up pretty good.
But I can't stop thinking about what the radiology-oncologist told me last week. "Any lesions in the brain, of any size, can cause things to go a little whacky upstairs."
So I think I'm going to try out the oncologist's cell-phone again this morning. I'm looking for a little peace of mind. And I'm looking for a Monday without any episodes of numbness. I'd rather not go for three-days in a row.
As my primary physician explained to me (and he is one who will take phone calls), "That's the way the business works. You can't charge someone unless they come into the office."
I consider having my oncologist's cell phone number a privilege, and I am careful not to abuse that privilege. In the many months that I have had his number I've used it only twice.
I am considering calling him this morning though.
Over the weekend I had two odd little incidents. Parts of my body went numb, and felt like they went to sleep. I've had this happend to me before in months previous. But I never had it happen on back to back days before, so I'm slightly concerned about it.
On Saturday, around mid-morning, suddenly my right hand went numb. I still had full movement, full control and coordination, it just went numb. A few minutes later the right side of my face went numb as well, including the right side of my mouth and the right side of my tongue. It all lasted no more than 30-minutes. It then went away and I was fine the rest of the day.
On Sunday I woke up with a stiff spot in the left side of my neck. It was no big deal. It just felt like I slept a little strange. Again around mid-morning suddenly the left side of my neck went numb. It lasted about 30 minutes again and then cleared and I was fine after that for the rest of the day.
This kind of thing has happened to me before several times since the beginning of the year. Typically it starts in the right or left hand, then goes to the right or left side of the face. It always goes away quickly. It's very random. It always drew my attention quite a bit but I had never made anything of it since it happened so rarely.
I've gotten use of all the weird things that can go on when you're actively using chemotherapy to attack the cancer within the body. There always seems to be little wars going on inside, here one day, over there the next day. During my last visit the doctor asked me if I had any pain. I told him I have the "pain du jour," a different pain in a different place every day. But it's not any pain with a direct relation to cancer growth.
I wouldn't be surprised at all to learn that my recent episodes of numbness are caused by the chemotherapy. The chemo can mess you up pretty good.
But I can't stop thinking about what the radiology-oncologist told me last week. "Any lesions in the brain, of any size, can cause things to go a little whacky upstairs."
So I think I'm going to try out the oncologist's cell-phone again this morning. I'm looking for a little peace of mind. And I'm looking for a Monday without any episodes of numbness. I'd rather not go for three-days in a row.
Friday, June 5, 2009
Little More Focus
My situation has become a little complex. I've gone through so much fighting of this cancer that I've reached a point where the doctors and nurses and radiologists, everyone at the medical facilities, has to think a bit beyond normal procedures.
For example, when a radiologist looks at my latest scan they will see both old tumors that have been treated, as well as the possibility of new ones. Some things that may look like tumors may just be leftover scar tissue from a successfully treated tumor. How do you tell the difference?
The most recent radiology report from my last MRI of the brain was very vague. The radiologist did have access to my prior scans but had no way of knowing which areas were already treated. So he just listed everything. This was little help.
I met with my neurosurgeon who, in my opinion, was unprepared for our meeting. I was hoping for clarification but received none. He only had access to my latest MRI, which is impossible to make a judgement on without reference to prior scans and prior records of treatments.
A doctor once told me that typically neurosurgeons are the primadonnas of the medical world. It's a generalization of course. But I've found that to be true.
The neursurgeon recommended arranging another Gamma Knife treatment for me, rationalizing that they'd figure out exactly what is going on before the procedure.
That wasn't good enough for me.
You really do have to be your own advocate. I've had some great doctors, and the assistance of some outstanding nurses, but in the end you really have to take it upon yourself to look after your own healthcare.
I called a doctor's assistant in the radiology-oncology department and arranged a special meeting with a doctor to clarify exactly what is going on in my head.
What goes on in my head, afterall, is a question folks have been trying to answer for years and years and years (smile).
I warned the nurse (a very helpful gal) that we will need at least my last two scans of the brain as well as my Gamma Knife treatment history. All should be ready so the doctor and I can review them together and discover together what is new, what is old, and what we should do from here.
It worked.
We meticulously went through my brain from tip to brain stem and compared current findings with past scans and treatments. We did discover that some of the tumors that the radiologist was calling new were actually old, and had been treated. The treated areas do not just disappear, they die slowly from the radiation poisoning and eventually convert into dead tissue.
At the end of our examination of my brain we concluded that three tumors were already existing from my scan in April, and none had changed in size. Only one was brand new since the April scan. Everything else had been previously treated.
All the tumors are very small. The largest is around two-millimeters.
We had purposely let the three found in April go, just so we could watch them to see just how fast they may expand. We were thrilled that they hadn't expanded at all.
Although medicine is an exacting science, there is certainly a lot to Mother Nature that cannot be easily predicted. Cancer is always a wild card.
Cancer can go into remission and just play dead for many months at times, and in some people. Then suddenly it can grow and spread wildly with no apparent rhyme or reason.
The decision Barb and I were faced with was whether to wait for another set period again to see how the tumors in the brain continue to act, or just go for another Gamma Knife radiation treatment and kill the four active tumors.
Barb and I were having a tough time deciding and the doctor could tell that we were struggling a bit in making this decision. Kindly he interjected his professional opinion. He felt that it was best just to set-up an appointment for the Gamma Knife and radiate the existing tumors while they were small and manageable. He told us that we could come back to the Gamma Knife over and over and over. It was no big deal, he said.
We agreed. I'll go for my fourth Gamma Knife this month, June 24th.
For example, when a radiologist looks at my latest scan they will see both old tumors that have been treated, as well as the possibility of new ones. Some things that may look like tumors may just be leftover scar tissue from a successfully treated tumor. How do you tell the difference?
The most recent radiology report from my last MRI of the brain was very vague. The radiologist did have access to my prior scans but had no way of knowing which areas were already treated. So he just listed everything. This was little help.
I met with my neurosurgeon who, in my opinion, was unprepared for our meeting. I was hoping for clarification but received none. He only had access to my latest MRI, which is impossible to make a judgement on without reference to prior scans and prior records of treatments.
A doctor once told me that typically neurosurgeons are the primadonnas of the medical world. It's a generalization of course. But I've found that to be true.
The neursurgeon recommended arranging another Gamma Knife treatment for me, rationalizing that they'd figure out exactly what is going on before the procedure.
That wasn't good enough for me.
You really do have to be your own advocate. I've had some great doctors, and the assistance of some outstanding nurses, but in the end you really have to take it upon yourself to look after your own healthcare.
I called a doctor's assistant in the radiology-oncology department and arranged a special meeting with a doctor to clarify exactly what is going on in my head.
What goes on in my head, afterall, is a question folks have been trying to answer for years and years and years (smile).
I warned the nurse (a very helpful gal) that we will need at least my last two scans of the brain as well as my Gamma Knife treatment history. All should be ready so the doctor and I can review them together and discover together what is new, what is old, and what we should do from here.
It worked.
We meticulously went through my brain from tip to brain stem and compared current findings with past scans and treatments. We did discover that some of the tumors that the radiologist was calling new were actually old, and had been treated. The treated areas do not just disappear, they die slowly from the radiation poisoning and eventually convert into dead tissue.
At the end of our examination of my brain we concluded that three tumors were already existing from my scan in April, and none had changed in size. Only one was brand new since the April scan. Everything else had been previously treated.
All the tumors are very small. The largest is around two-millimeters.
We had purposely let the three found in April go, just so we could watch them to see just how fast they may expand. We were thrilled that they hadn't expanded at all.
Although medicine is an exacting science, there is certainly a lot to Mother Nature that cannot be easily predicted. Cancer is always a wild card.
Cancer can go into remission and just play dead for many months at times, and in some people. Then suddenly it can grow and spread wildly with no apparent rhyme or reason.
The decision Barb and I were faced with was whether to wait for another set period again to see how the tumors in the brain continue to act, or just go for another Gamma Knife radiation treatment and kill the four active tumors.
Barb and I were having a tough time deciding and the doctor could tell that we were struggling a bit in making this decision. Kindly he interjected his professional opinion. He felt that it was best just to set-up an appointment for the Gamma Knife and radiate the existing tumors while they were small and manageable. He told us that we could come back to the Gamma Knife over and over and over. It was no big deal, he said.
We agreed. I'll go for my fourth Gamma Knife this month, June 24th.
Thursday, June 4, 2009
Still Going Amish
One thing that I have definitely noticed since I was diagnosed with cancer is my complete loss of appetite for packaged processed food or drink.
I used to drink my share of soda and sweetened iced tea. Quite frankly I would never drink water. Now water is all that I drink. Soda just turns my stomach sour.
Barb has become quite the bread baker, from loaves of crusty French bread to English Muffins, the taste as well as the smells that fill the house are just incredible. Widely distributed bread brands pumped out in volume, in factories, just all taste like cardboard to me now.
I used to think nothing of microwaving a couple of Hot Pockets, or heating up a Tony's frozen pizza in the oven. What was I thinking? If I tried to eat any of those types of things anymore I would just feel sick.
We don't mind cooking. We feel it's worth taking the time to treat ourselves well, and to live healthier. Plus it can be a very creative and fun endeavor. And what better reward than to sit down and taste the fruits of your labor?
Cooking from scratch with fresh ingredients is just plain sexy.
Heating up a Hot Pocket in the microwave is not.
For the past couple of weeks I've been telling Barb that I'm going to start making my own macaroni salad. The macaroni salad at the butcher is good, and so is the macaroni salad across the street at the deli. It's fresh made. But it has a little too much egg for my taste. And it's expensive, around two dollars for a little container.
So yesterday I made my first batch of macaroni salad. Barb and I agreed. It was very good.
For the cost of a small container at the butcher, the deli, or the grocery store I made a HUGE bowl full. Now my only problem is having too much.
It was easy to put together. Boil some elbow macaroni. Mix it with chopped hard boiled eggs, onion, celery and carrots. Then stir in a sauce made of mayonaisse, mustard and vinegar, and voila awesome macaroni salad.
It costs me little. It took little time. And I've got enough macaroni salad to appease a giant family picnic for both sides of the family.
Our lives become so busy and so crazy that we don't have time anymore for the simplest of things.
We're still going Amish here. We're still supporting local businesses as much as possible, and we're still trying to return to a village concept of society. I see no value in letting large companies run the bakeries out of every town, as is now done. What have we gained by this? Well a few became rich. And we're eating stuff that tastes like cardboard and is laced with chemicals and preservatives.
Now I just have to get the homemade Detroit-style potato salad recipe from my Mom.
For a good laugh, check out this comedian's take on Hot Pockets.
I used to drink my share of soda and sweetened iced tea. Quite frankly I would never drink water. Now water is all that I drink. Soda just turns my stomach sour.
Barb has become quite the bread baker, from loaves of crusty French bread to English Muffins, the taste as well as the smells that fill the house are just incredible. Widely distributed bread brands pumped out in volume, in factories, just all taste like cardboard to me now.
I used to think nothing of microwaving a couple of Hot Pockets, or heating up a Tony's frozen pizza in the oven. What was I thinking? If I tried to eat any of those types of things anymore I would just feel sick.
We don't mind cooking. We feel it's worth taking the time to treat ourselves well, and to live healthier. Plus it can be a very creative and fun endeavor. And what better reward than to sit down and taste the fruits of your labor?
Cooking from scratch with fresh ingredients is just plain sexy.
Heating up a Hot Pocket in the microwave is not.
For the past couple of weeks I've been telling Barb that I'm going to start making my own macaroni salad. The macaroni salad at the butcher is good, and so is the macaroni salad across the street at the deli. It's fresh made. But it has a little too much egg for my taste. And it's expensive, around two dollars for a little container.
So yesterday I made my first batch of macaroni salad. Barb and I agreed. It was very good.
For the cost of a small container at the butcher, the deli, or the grocery store I made a HUGE bowl full. Now my only problem is having too much.
It was easy to put together. Boil some elbow macaroni. Mix it with chopped hard boiled eggs, onion, celery and carrots. Then stir in a sauce made of mayonaisse, mustard and vinegar, and voila awesome macaroni salad.
It costs me little. It took little time. And I've got enough macaroni salad to appease a giant family picnic for both sides of the family.
Our lives become so busy and so crazy that we don't have time anymore for the simplest of things.
We're still going Amish here. We're still supporting local businesses as much as possible, and we're still trying to return to a village concept of society. I see no value in letting large companies run the bakeries out of every town, as is now done. What have we gained by this? Well a few became rich. And we're eating stuff that tastes like cardboard and is laced with chemicals and preservatives.
Now I just have to get the homemade Detroit-style potato salad recipe from my Mom.
For a good laugh, check out this comedian's take on Hot Pockets.
Wednesday, June 3, 2009
What a Difference a Day Makes
Yesterday things came together. I wish I didn't have to work so hard to make other people work. But, that's no different than the way things have been through my entire life.
I do not like being responsible for other people. I do not like making sure that people are doing their jobs. I do not like being the boss.
I was the boss once at a printing and design firm in Harrisburg. I'm pretty sure one of the main reasons I was made the boss was because I truly believed in working hard and doing good work.
We had a pressman there who was truly, always grumpy and unhappy. It's just the way he was. He complained. He argued. He was impossible to get along with. He was a big guy, both height and weight, and if he got a bad plate for his press he ripped the metal plate right off the cylinder while yelling and screaming.
One day a friend of mine who worked there also just got tired of the negativity. During one of his regular temper tantrums, my friend approached him and said "Look. I drug myself in here, drove through traffic, through the snow, what do you say we just try to make the best of it and shut up?"
The big pressman was shocked and silent. That's why my friend was my friend.
But being the boss? Well you just couldn't pay me enough. One former co-worker once told me that I'm like "a gun for hire." I was OK with that.
I had to work for more than three months to settle a dispute over $312 between my hospital's billing department and my health insurer. It felt like I was in the boss role and they were employees who quite frankly couldn't care less. But it's finally miraculously been settled. I didn't have any choice but to try to mediate and bring the parties to some resolution. If they couldn't agree (or care to even try) they were happy to just make it my problem.
Yesterday I also had to take charge of my medical treatments again. But this went much easier. Unfortunately they know me quite well at the cancer center.
Barb and I are faced with a decision whether to treat existing small tumors in the brain with radiation right away, or to wait for a set period of time and then checking the state of the brain then.
But we did not have the facts we needed to make the decision.
I called the radiology-oncology department expecting to ask to sit down with one of the doctors and spot by spot review my last two brain MRI's to try to gauge exactly what was going on. But before I could suggest that they suggested it first! So we have an appointment with a very knowledgeable doctor to do just that.
I've been told that the three existing tumors are all stable and none have grown. But only two tumors are noted on the radiologist's report. What happened to the third? Did it resolve without radiation?
I was also told that a few tiny spots have appeared. What is tiny? None of them were measured. Are they too small to measure? Too small to treat? How many is a few?
The radiologist's report from the MRI does mention one small "foci" in the pons section of the brain. The pons is the top of the brain stem in the center of the brain and is an area that is tough to treat and requires treatment. It shouldn't be waited on like other areas of the brain can be waited on.
I asked everyone I saw if this area in the pons was just residue from a previous treatment or was it actually a new growth area. No one knew.
If it is a new growth we will have to move towards the Gamma Knife radiation treatment in the weeks to come.
I'll make sure I get the answers tomorrow.
Working through health issues can be a giant challenge, and take a lot out of a person. But I really never expected that I would have to work so hard to ensure that the care I'm getting is the best. And I really never expected that I'd have to fight so much with my health insurer to live up to our contract.
But I guess it's all a part of human nature. In my own health care, whether I like it or not, I am the boss.
I do not like being responsible for other people. I do not like making sure that people are doing their jobs. I do not like being the boss.
I was the boss once at a printing and design firm in Harrisburg. I'm pretty sure one of the main reasons I was made the boss was because I truly believed in working hard and doing good work.
We had a pressman there who was truly, always grumpy and unhappy. It's just the way he was. He complained. He argued. He was impossible to get along with. He was a big guy, both height and weight, and if he got a bad plate for his press he ripped the metal plate right off the cylinder while yelling and screaming.
One day a friend of mine who worked there also just got tired of the negativity. During one of his regular temper tantrums, my friend approached him and said "Look. I drug myself in here, drove through traffic, through the snow, what do you say we just try to make the best of it and shut up?"
The big pressman was shocked and silent. That's why my friend was my friend.
But being the boss? Well you just couldn't pay me enough. One former co-worker once told me that I'm like "a gun for hire." I was OK with that.
I had to work for more than three months to settle a dispute over $312 between my hospital's billing department and my health insurer. It felt like I was in the boss role and they were employees who quite frankly couldn't care less. But it's finally miraculously been settled. I didn't have any choice but to try to mediate and bring the parties to some resolution. If they couldn't agree (or care to even try) they were happy to just make it my problem.
Yesterday I also had to take charge of my medical treatments again. But this went much easier. Unfortunately they know me quite well at the cancer center.
Barb and I are faced with a decision whether to treat existing small tumors in the brain with radiation right away, or to wait for a set period of time and then checking the state of the brain then.
But we did not have the facts we needed to make the decision.
I called the radiology-oncology department expecting to ask to sit down with one of the doctors and spot by spot review my last two brain MRI's to try to gauge exactly what was going on. But before I could suggest that they suggested it first! So we have an appointment with a very knowledgeable doctor to do just that.
I've been told that the three existing tumors are all stable and none have grown. But only two tumors are noted on the radiologist's report. What happened to the third? Did it resolve without radiation?
I was also told that a few tiny spots have appeared. What is tiny? None of them were measured. Are they too small to measure? Too small to treat? How many is a few?
The radiologist's report from the MRI does mention one small "foci" in the pons section of the brain. The pons is the top of the brain stem in the center of the brain and is an area that is tough to treat and requires treatment. It shouldn't be waited on like other areas of the brain can be waited on.
I asked everyone I saw if this area in the pons was just residue from a previous treatment or was it actually a new growth area. No one knew.
If it is a new growth we will have to move towards the Gamma Knife radiation treatment in the weeks to come.
I'll make sure I get the answers tomorrow.
Working through health issues can be a giant challenge, and take a lot out of a person. But I really never expected that I would have to work so hard to ensure that the care I'm getting is the best. And I really never expected that I'd have to fight so much with my health insurer to live up to our contract.
But I guess it's all a part of human nature. In my own health care, whether I like it or not, I am the boss.
Tuesday, June 2, 2009
Headaches
One of the many unsuspecting side-effects of cancer treatments is frustration.
Chances are great that if you ever have to receive cancer treatment you will be dealing with HUGE entities, like hospitals and insurance companies. It's a heavy load to deal with, giants compared to your tiny bug-like self.
There are billing departments at the hospital and claims departments at the insurance company. It's all rather nameless and faceless so it's easy for them, they don't have to care.
When I've hired folks to work on my house, install a new furnace, rebuild a deck, repair the brick sidewalk, install central air, I've always hired people right here in Marietta. They have a name, a face, a reputation they're proud of and work hard to protect.
If the customer service representative at the insurance company gets frustrated with me she just "accidentally" hangs up. What does he or she care? Chances are great that I'll never talk to them again.
Fighting cancer is a tough fight. You can only imagine until you've been there. I hope none of you ever are there.
It's a tough enough fight without having to take on the big giants who are in charge of your care. I've tried everything, playing the good cop, playing the bad cop. I've been flattering and sweet, and I've been firm and decisive. Nothing really seems to break the endless cycle of sloppiness.
I always think to myself, "If I ran my business like this, I wouldn't have a business."
My insurance company has doubled my monthly premiums since I first signed on five short years ago. If I doubled my prices on my clients in that time I wouldn't have clients. The only reason the insurance company knows they can get away with it is because now I have a pre-existing condition and I can't take my business anywhere else.
The billing department couldn't get the money they expected out of my insurance company so they sent me the bill and made it my problem. Thanks. Again, if I passed the buck around on the billing I wouldn't have a business.
I work hard, take pride in my work, try to provide excellent service, while the big giants do whatever they want. Do I get a stimulus? a bailout? a rope with a reuben sandwich attached to it?
I could call my insurance company up three consecutive times on any given day - I could do it right now - and I would be told three completely different things. I guarantee it. It has happened to me time and time before.
If I get mad the csr's just hang up on me and let me call back and get somebody else. If I'm really nice they just figure I'm no one to worry about and just ignore me. I've come to the conclusion that the little interaction between us the better.
Once my insurance company mistakenly billed me $25 for ever CT or MRI scan, and they billed me that amount for 11-months. Then suddenly they realized they were screwing up and started billing me $150 per scan. On top of that, a csr told me that she was going to try to collect the balance from their incorrect billings throughout the year.
I can see me now, "Hello Joe. How are you? Hey I've been billing you wrong for that newsletter all year. I'm sorry about that. But I'm going to have to send you a bill to make-up for my mistake. Yeah, I'm afraid it was a pretty big mistake. Double the amount? Oh no, it's much more than that, more like six times the amount."
We're all obviously not playing by the same rules.
Chances are great that if you ever have to receive cancer treatment you will be dealing with HUGE entities, like hospitals and insurance companies. It's a heavy load to deal with, giants compared to your tiny bug-like self.
There are billing departments at the hospital and claims departments at the insurance company. It's all rather nameless and faceless so it's easy for them, they don't have to care.
When I've hired folks to work on my house, install a new furnace, rebuild a deck, repair the brick sidewalk, install central air, I've always hired people right here in Marietta. They have a name, a face, a reputation they're proud of and work hard to protect.
If the customer service representative at the insurance company gets frustrated with me she just "accidentally" hangs up. What does he or she care? Chances are great that I'll never talk to them again.
Fighting cancer is a tough fight. You can only imagine until you've been there. I hope none of you ever are there.
It's a tough enough fight without having to take on the big giants who are in charge of your care. I've tried everything, playing the good cop, playing the bad cop. I've been flattering and sweet, and I've been firm and decisive. Nothing really seems to break the endless cycle of sloppiness.
I always think to myself, "If I ran my business like this, I wouldn't have a business."
My insurance company has doubled my monthly premiums since I first signed on five short years ago. If I doubled my prices on my clients in that time I wouldn't have clients. The only reason the insurance company knows they can get away with it is because now I have a pre-existing condition and I can't take my business anywhere else.
The billing department couldn't get the money they expected out of my insurance company so they sent me the bill and made it my problem. Thanks. Again, if I passed the buck around on the billing I wouldn't have a business.
I work hard, take pride in my work, try to provide excellent service, while the big giants do whatever they want. Do I get a stimulus? a bailout? a rope with a reuben sandwich attached to it?
I could call my insurance company up three consecutive times on any given day - I could do it right now - and I would be told three completely different things. I guarantee it. It has happened to me time and time before.
If I get mad the csr's just hang up on me and let me call back and get somebody else. If I'm really nice they just figure I'm no one to worry about and just ignore me. I've come to the conclusion that the little interaction between us the better.
Once my insurance company mistakenly billed me $25 for ever CT or MRI scan, and they billed me that amount for 11-months. Then suddenly they realized they were screwing up and started billing me $150 per scan. On top of that, a csr told me that she was going to try to collect the balance from their incorrect billings throughout the year.
I can see me now, "Hello Joe. How are you? Hey I've been billing you wrong for that newsletter all year. I'm sorry about that. But I'm going to have to send you a bill to make-up for my mistake. Yeah, I'm afraid it was a pretty big mistake. Double the amount? Oh no, it's much more than that, more like six times the amount."
We're all obviously not playing by the same rules.
Monday, June 1, 2009
Can I Introduce You Doctors to One Another?
Barb and I went to the neurosurgeon today. We felt that this was pretty much going to be a simple appointment.
Afterall the oncologist called us from an airport on Friday to tell us that he has reviewed by MRI report and everything looked terrific. The three small lesions in the brain that we were watching were all unchanged, completely unchanged in shape or scope.
Based on this scan the oncologist told us we basically had one of two decisions, we could let everything go for another set time and then do another MRI of the brain, or we could go straight to Gamma Knife treatment to treat with radiation what was visible right now.
Before deciding we wanted the neurologist's interpretation of the MRI.
He hadn't even looked at it until he came into the room to see us. He was literally sitting down to look at it for the first time.
"Well there is a new one in the Pons (area of the brain)," he said.
"How do you know that's not a previously treated spot," I asked.
"Well that's a good question," he responded. "Wait, you shouldn't treat lesions in the pons."
"But I've already had two lesions treated in the Pons," I quickly replied. "The radiologist-oncologist treated them successfully but wanted it done right away."
"Really?" my neurosurgeon asked.
Yes really.
What do I have to do to bring these doctors together and get them on the same page? One says one thing, one says another, it's lunacy. It's like trying to get Muslims and Jews to get together and find a way to get along. It just doesn't seem possible.
So now I have to take charge of my own health destiny again, with no medical knowledge. I have to inspire nurses and doctors to do a little more, provide me with more information, interview all doctors involved and come up with decisions that hopefully can prove in my best interest.
I never though my journalism education and career would end up benefiting me so much in my own medical circumstance.
Oh, and I got my fourth erroneous bill for $321 from the hospital this morning. The hospital and my health insurer are arguing over who is going to pay this amount. They both agree that I am not responsible for this bill. But since they can't come to any agreement on which company should pick up this bill they keep putting the burden back onto me. Thanks. Swell. You guys are great. You ever feel like a bug that's just about to get stepped on?
Afterall the oncologist called us from an airport on Friday to tell us that he has reviewed by MRI report and everything looked terrific. The three small lesions in the brain that we were watching were all unchanged, completely unchanged in shape or scope.
Based on this scan the oncologist told us we basically had one of two decisions, we could let everything go for another set time and then do another MRI of the brain, or we could go straight to Gamma Knife treatment to treat with radiation what was visible right now.
Before deciding we wanted the neurologist's interpretation of the MRI.
He hadn't even looked at it until he came into the room to see us. He was literally sitting down to look at it for the first time.
"Well there is a new one in the Pons (area of the brain)," he said.
"How do you know that's not a previously treated spot," I asked.
"Well that's a good question," he responded. "Wait, you shouldn't treat lesions in the pons."
"But I've already had two lesions treated in the Pons," I quickly replied. "The radiologist-oncologist treated them successfully but wanted it done right away."
"Really?" my neurosurgeon asked.
Yes really.
What do I have to do to bring these doctors together and get them on the same page? One says one thing, one says another, it's lunacy. It's like trying to get Muslims and Jews to get together and find a way to get along. It just doesn't seem possible.
So now I have to take charge of my own health destiny again, with no medical knowledge. I have to inspire nurses and doctors to do a little more, provide me with more information, interview all doctors involved and come up with decisions that hopefully can prove in my best interest.
I never though my journalism education and career would end up benefiting me so much in my own medical circumstance.
Oh, and I got my fourth erroneous bill for $321 from the hospital this morning. The hospital and my health insurer are arguing over who is going to pay this amount. They both agree that I am not responsible for this bill. But since they can't come to any agreement on which company should pick up this bill they keep putting the burden back onto me. Thanks. Swell. You guys are great. You ever feel like a bug that's just about to get stepped on?
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