Dear Dr. ____________
On Tuesday, I made an appointment to speak with the Executive Director of Susan G. Koman. I was delighted to see that they took the issues I raised seriously. I volunteered in earnest to be a speaker for them and specifically, to read research proposals for the organization. I discussed with them the very serious issue of
pre-certification of drugs and scans for cancer patients.
In 2005, I recall that my insurance company began requiring pre-certification for all CT scans, MRIs, Pet scans, Mugascans - basically most radiological studies that are extremely important to patients with serious diseases such as cancer. These scans are essential to diagnosis and to the re-staging of the disease. They are the lynch-pin of treatment. In cancer treatment they are actually routine. In recent years, the drugs that keep cancer patients alive are now subject to pre-certificaiton. I have watched as your office went from a relatively small, friendly place to a very large, extremely hectic office where everyone is rushing in a frantic manner. You have no time and most people have no time. I have been told repeatedly that the dramatic change I have observed in healthcare is due to the extremely difficult rules that the insurance companies have placed on the physicians and their practices. It is pretty obvious and I still remember spending an entire day in your office trying to get a relatively simple drug pre-certified and the crazy problems that occurred.
The root of this problem is apparently Erisa, a law I knew nothing about until I became a cancer patient and you told me about it. Erisa is a law that was passed in 1972 and in section 514 I believe there is language that protects insurance companies from being sued in state courts. Why is this important, it means the insurance companies do not have to worry too much if they deny someone and they are injured. This is where I wish I had a law degree, but this makes insurance companies extremely powerful and basically able to pass on to physicians pretty much any rules they want to save money. They make the decisions about the scans, and by they it is who ever reviews the answers to a group of questions about the patient. More and more requests are being refused or there is just too big a hassle factor involved. So basically, the insurance companies keep tightening the screws, the oncologists have to spend more and more time just trying to get coverage for patients. There is less and less time for patients. Patients in this very vulnerable, fragile, frail group are the most likely to suffer from this sort of complication in the delivery from medicine. They are overwhelmed and some are too sick to question anything, most have no idea that the reason their dr has no time for him or her is because he or she is constantly dealing with insurance snafus. They are not the types to have time or energy to fight back and if they die, they are a grateful group. I have seen many patients die in my eight and a half years. Many people live with cancer, many are cured, but many still die.
I have discovered the the recently proposed health bills have language protecting the insurance companies in this regard. See page 49 of HR 3200. There is language that apparently protects section 514 of Erisa. I feel that any health bill that is going to be passed should include language that protects people with serious illness. At the very least, physicians should be released from these onerous restrictions that are destroying healthcare for the most vulnerable populations.
Sincerely, Mary
Friday, January 8, 2010
A typical week as a chronic cancer patient, neupogen and nadirs
Dear Dr.___,
This is a typical week in my oncological life. I had three visits to your office. On Monday and Thursday, I came and received neupogen shot, on Friday I was treated. Neupogen, also called epogen is a miracle drug that stimulates the growth of white blood cells in the bone marrow. Its sister or brother drug Procrit for red blood cell production( was named one of the top drug discoveries of the century). This amazing drug and a few related drugs it possible to have continuous chemotherapy as I have had for eight and a half years. With it, the hematological effects of the chemotherapeutic agents I take called navelbine and etoposide are counteracted and I can have normal white counts on most days. As you know I receive two of these shots a week. Medicine is interesting because it is often about the current day. As a scientist, I am focused on trends and patterns. I focus on the past and the future. I try to use the past, to predict the future.
When a patient comes in for chemotherapy their CBC is measured and if one's counts are good, meaning if one has reasonable white counts, red counts and platelets, one can be treated. For white counts which one needs to fight infection, the count has to be pretty close to 4000 to be treated. The day I am treated, my count is usually OK. For years, I have stated that it is not the count on the day of treatment that matters, it is the count on the day of the nadir from the drugs one is taking.
I wonder what difference it makes if I have a moderately low count on the day I receive the drug, when the low point occurs somewhere later in the week. One thing I notice is I feel terrible on Monday into Tuesday. I normally receive a neupogen on Tuesday and on Friday, the day I am treated. I know that I have days where I have low counts that are just unstudied. So my thoughts are what is the point of the timing of these shots. Well, they certainly help, but I am also sure there are days I am vulnerable to infection.
This week was peculiar because I had doctors appointments all week and I had to receive my Tuesday shot on Monday. When I received this shot I am sure that my counts soared on Tuesday. Sometimes the second day counts will be on the order 13,000. I will have to put the units in for this being the chemist I am. I worried about this because I thought what happens if I sink too low to be treated on Friday, simply because of the timing of this shot. I actually come on tuesday to receive the shot most weeks so I will have a good count on Friday and be treated. I feel this should not be the motivation for the timing of the shots. This idea is a tough one to get across.
So this week, I was worried. On Tuesday, I went down and volunteered at the Susan G. Komen Foundation, a topic I will get to in a future blog and then went to see my brain surgeon who is a phenomenal doctor in downtown Philadelphia. As I have told you dr. ________, this is one of two or three doctors I would recommend to you because for you I have extremely high standards. This brain surgeon is the person to go to if you need brain surgery. Very smart and as cool as a cucumber. I don't mean he is a cold person, I mean he is cool, calm and collected. I will never forget my sister being with me when I had stereotactic radiosurgery and this brain surgeon was screwing a stereotactic frame into my head. I was all drugged up and I was yammering on about all sorts of ridiculous stuff to my sister and I can remember his cool and calm demeanor. Nothing we said distracted his intense focus and since that day, I have thought about how deeply I trust him to operate on my brain and there are not too many people you should trust to operate the brain. I would not be afraid if he had to cut into my head, though I still avoid conventional surgeries of all types as you knwo. He and I met and discussed the status of my two brain surgeons and decided I don't have any treatment from him now. We had some good laughs and some serious talk. He is a good person.
On Thursday, I woke up feeling terrible and I felt my counts were dropping. It happened the same day I had an appointment to have sort of major work done on my gums and teeth by a periodontis. As we recently discovered I probably have a little jaw osteonecrosis and when I went on etoposide, my whole mouth became a mess. It has been sore, my teeth hurting, my throat very sore. You have told me that this is a sign of the nadir of etoposide and this seems reasonable to em. I know from 8.5 years that when my counts are dropping, I feel sick (I threw up), I was shaking, had a headache, and my mouth was extremely sore as was my throat. I called your office and asked for an "extra" neupogen shot. The person at the desk did not know me and ten minutes later someone called me while I was at Mass. I left Mass and spoke with a nurse practiyioner who I also do not know. This woman told me I had to come in and get counts done and then they would decide about the shot. I stated I just wanted to get the shot and go to my periodontal appointment. I explained that I did not want the shot for today, I wanted the shot for tomorrow. In other words, I wanted my counts to soar to 13000 so I could heal from the bad dental work that was going to cause a lot of bleeding in my sensitve messed up mouth with jaw osteonecrosis. She stated we could discuss that when I got there. She said, "You know how quick it will be" Well your office is among the most efficient (my brain surgeon - the wait is an average of two hours), but one night I calculated that I have spent well over a work year just at your office.
When I arrived I stated my argument again. I said that I wanted the shot irrespective of the counts. I was not worried about today, I was worried about tomorrow. I wanted my gums to heal fast. I was refused and blood was drawn from my port-o-cath adn sent to the labs. I made the argument again and asked it to be stated to you.
You came in and thankfully gave me the shot immediately, but I wonder about all the red tape and rules. Why can't a shot be given in anticipation of a nadir and not in reaction to a nadir. It makes no sense to me.
My plan worked. My gums were a bleeding sore mess, but when those counts soared, I healed very nicely and rapidly and I feel great today.
This sounds sort of negative and I don't mean it that way, though it is not expedient, the neupogen shots would best be given in anticipation of a nadir (my request on Thursday) than in reaction to a nadir and treatments probably should not hinge on the days white count (unless it is ridiculously low).
I hope this makes sense. It is hard to be a doctor. It is hard to be a nurse, but wow it is hard to be patient. I find it is this intermable explaining of things to people who don't understand what I am talking about. People following procedures and not always know why, people only focused on the day, on the moment and not learning from the patterns of data. I sat this afternoon and realized it would take me years to teach new people how I think. Years.
Sincerely, Mary
This is a typical week in my oncological life. I had three visits to your office. On Monday and Thursday, I came and received neupogen shot, on Friday I was treated. Neupogen, also called epogen is a miracle drug that stimulates the growth of white blood cells in the bone marrow. Its sister or brother drug Procrit for red blood cell production( was named one of the top drug discoveries of the century). This amazing drug and a few related drugs it possible to have continuous chemotherapy as I have had for eight and a half years. With it, the hematological effects of the chemotherapeutic agents I take called navelbine and etoposide are counteracted and I can have normal white counts on most days. As you know I receive two of these shots a week. Medicine is interesting because it is often about the current day. As a scientist, I am focused on trends and patterns. I focus on the past and the future. I try to use the past, to predict the future.
When a patient comes in for chemotherapy their CBC is measured and if one's counts are good, meaning if one has reasonable white counts, red counts and platelets, one can be treated. For white counts which one needs to fight infection, the count has to be pretty close to 4000 to be treated. The day I am treated, my count is usually OK. For years, I have stated that it is not the count on the day of treatment that matters, it is the count on the day of the nadir from the drugs one is taking.
I wonder what difference it makes if I have a moderately low count on the day I receive the drug, when the low point occurs somewhere later in the week. One thing I notice is I feel terrible on Monday into Tuesday. I normally receive a neupogen on Tuesday and on Friday, the day I am treated. I know that I have days where I have low counts that are just unstudied. So my thoughts are what is the point of the timing of these shots. Well, they certainly help, but I am also sure there are days I am vulnerable to infection.
This week was peculiar because I had doctors appointments all week and I had to receive my Tuesday shot on Monday. When I received this shot I am sure that my counts soared on Tuesday. Sometimes the second day counts will be on the order 13,000. I will have to put the units in for this being the chemist I am. I worried about this because I thought what happens if I sink too low to be treated on Friday, simply because of the timing of this shot. I actually come on tuesday to receive the shot most weeks so I will have a good count on Friday and be treated. I feel this should not be the motivation for the timing of the shots. This idea is a tough one to get across.
So this week, I was worried. On Tuesday, I went down and volunteered at the Susan G. Komen Foundation, a topic I will get to in a future blog and then went to see my brain surgeon who is a phenomenal doctor in downtown Philadelphia. As I have told you dr. ________, this is one of two or three doctors I would recommend to you because for you I have extremely high standards. This brain surgeon is the person to go to if you need brain surgery. Very smart and as cool as a cucumber. I don't mean he is a cold person, I mean he is cool, calm and collected. I will never forget my sister being with me when I had stereotactic radiosurgery and this brain surgeon was screwing a stereotactic frame into my head. I was all drugged up and I was yammering on about all sorts of ridiculous stuff to my sister and I can remember his cool and calm demeanor. Nothing we said distracted his intense focus and since that day, I have thought about how deeply I trust him to operate on my brain and there are not too many people you should trust to operate the brain. I would not be afraid if he had to cut into my head, though I still avoid conventional surgeries of all types as you knwo. He and I met and discussed the status of my two brain surgeons and decided I don't have any treatment from him now. We had some good laughs and some serious talk. He is a good person.
On Thursday, I woke up feeling terrible and I felt my counts were dropping. It happened the same day I had an appointment to have sort of major work done on my gums and teeth by a periodontis. As we recently discovered I probably have a little jaw osteonecrosis and when I went on etoposide, my whole mouth became a mess. It has been sore, my teeth hurting, my throat very sore. You have told me that this is a sign of the nadir of etoposide and this seems reasonable to em. I know from 8.5 years that when my counts are dropping, I feel sick (I threw up), I was shaking, had a headache, and my mouth was extremely sore as was my throat. I called your office and asked for an "extra" neupogen shot. The person at the desk did not know me and ten minutes later someone called me while I was at Mass. I left Mass and spoke with a nurse practiyioner who I also do not know. This woman told me I had to come in and get counts done and then they would decide about the shot. I stated I just wanted to get the shot and go to my periodontal appointment. I explained that I did not want the shot for today, I wanted the shot for tomorrow. In other words, I wanted my counts to soar to 13000 so I could heal from the bad dental work that was going to cause a lot of bleeding in my sensitve messed up mouth with jaw osteonecrosis. She stated we could discuss that when I got there. She said, "You know how quick it will be" Well your office is among the most efficient (my brain surgeon - the wait is an average of two hours), but one night I calculated that I have spent well over a work year just at your office.
When I arrived I stated my argument again. I said that I wanted the shot irrespective of the counts. I was not worried about today, I was worried about tomorrow. I wanted my gums to heal fast. I was refused and blood was drawn from my port-o-cath adn sent to the labs. I made the argument again and asked it to be stated to you.
You came in and thankfully gave me the shot immediately, but I wonder about all the red tape and rules. Why can't a shot be given in anticipation of a nadir and not in reaction to a nadir. It makes no sense to me.
My plan worked. My gums were a bleeding sore mess, but when those counts soared, I healed very nicely and rapidly and I feel great today.
This sounds sort of negative and I don't mean it that way, though it is not expedient, the neupogen shots would best be given in anticipation of a nadir (my request on Thursday) than in reaction to a nadir and treatments probably should not hinge on the days white count (unless it is ridiculously low).
I hope this makes sense. It is hard to be a doctor. It is hard to be a nurse, but wow it is hard to be patient. I find it is this intermable explaining of things to people who don't understand what I am talking about. People following procedures and not always know why, people only focused on the day, on the moment and not learning from the patterns of data. I sat this afternoon and realized it would take me years to teach new people how I think. Years.
Sincerely, Mary
Friday, December 4, 2009
About the Hair
Dear Dr_______________,
I want to begin by saying I have always thought the best of you and any day I did not, I was in the wrong. I hope you know that I appreciate that you have a tremedously stressful and high skill profession and a very important one.
Today, I pointed out to you that I had lost a lot of hair due to etopside phosphate. This chemotherapeutic agent is a very strange drug that apparently does not achieve a consistent level in the blood stream of patients and is therefore, difficult to dose. It is a topomerase inhibitor (hence the name) and apparently needs more expose to work as it only works in the S phase of the cell cycle. Because of this strange behavior and this feeling I had not gotten a large enough dose to help my brain tumors (etopside penetrates the central nervous system), I was very surprised when my meager hair started falling out. I even signed a release warning it would fall out, but did not really believe it. As you know, this is not the first time I had my hair fall out so I should not be surprised.
My hair completely fell out in the summer of 2001 when I was being treated with taxtotere. I remember you very solemnly coming in and telling me that my hair would really fall out in two weeks time. I had read this, but I still said, "Do you really think so?" I remember it so well - the room, where I was sitting, where you were sitting Those were good days. In fact, I remember pretty much every thing you have ever say to me though I am always in such a rush to make my points I don't seem as though I am listening. I felt you needed to personally reiterate this so I would know or really accept it. As I was leaving that day (it was my first day of chemo), you asked from the door of your office if I needed anything or if I needed any questions answered. Of course, true to form, I did have a question about a hypersensitivity reaction that had been alluded to by a nurse. You don't remember, but I remember it like it was yesterday. I went to my parents house that weekend terrified the whole time (thinking I would be sitting at dinner and all my hair would fall out or I would have to be hospitalized far from my doctor after the first round of chemotherapy) and as you said, like clockwork, my hair fell out in clumps at the two week mark. I would run my fingers through my hair and it would come out by the thousands. I thought it was fascinating , but awful. By the end of the weekend I had no hair. Hair, hair everywhere. Hair thrown out the window on the Pennsylvania Turnpike, hair clogging drains. No wonder women have their heads shaved. Before this experience, I thought I might get lucky or that they were being dramatic. All hair comes off and all cancer patients know this, but all hair falls off. This surprised me I retained my eyebrows for a year , but when a very sweet friend died of colorectal cancer, I cried so much that my eyebrows and eyelashes were all gone. That is what makes you look blank. To this day, I want my eyebrows back. I never told you, but my son's dermatologist talked me into this drug that grows eyebrows on a famous model. I was always fascinated by it. It cost 120 dollars and it DID NOT WORK. I guess it was destined to fail since I was on chemotherapy, but he thought it might.
I always hid my lack of hair from my you, until once I was in the hospital for lymphedema and I did not know you visited patients in their beds and you caught me bald. I think you caught me bald in the Wawa once with your daughter. I was becoming increasingly lazy about the scarf. I dashed off quickly in the Wawa because I feared intruding in your private time. You probably don't remember. After I was caught, I increasingly ran around bald. My biggest fear was you seeing me. Why, I really can't explain. I was so scared you would react I guess. My students didn't mind, they never stared and were very cool with their bowling ball head, blank faced teacher, but the people outside, especially in retail establishments were and still are hard to deal with. Gawks, dropped jaws, stares, gratuitous smiles, questions and long cancer stories - you name it. But you know, I developed an unconscious method of looking down and it helped and I came to see listening to others who have had cancer as part of my work in life. I could tell they needed to tell their story.
As I grew a little more hair during the less harsh navelbine treatment, it was different, but still noticed. Once someone made fun of me from a car. I have been called a man many times, even a strange man. Perhaps because I was wearing a woman's outfit? I do dress like a girl. I always feel young inside, you know like I am thirty, I feel I have a young personality. But, outside, I look like a seventy year old man. Do you know, that I see my reflection in the side of the NMR superconducting magnet (it has a huge silver dewar) of our NMR spectrometer at work, I will be surprised because I see a seventy year old man. I don't know who it is. After eight years. I don't know who he is. I say, "who is that old man and then I am surprised - it is me!!! " Why does it surprise me? I think I never came to grips with it, I avoid looking at it just like my partially removed breast.
For awhile, I died the peach fuzz hair I had developed blond - it was extremely fun. I had no qualms. When I went to the hair place (first time after eight years - it is one thing I have saved on - hair cuts, shampoos, styling, conditioners, time in the shower - bald head has very easy upkeep) they made me sign a waver because they thought it would fall out and refused to dye it blond because it would be less visible. I said quite emphatically, that they did not understand my goal. A. I did not care if it fell out and B. I wanted it to look less visible. She could not get out of her mindset that she was trying to make it look normal which was impossible. It made me look more bald, but less like an eighty year old man. Now the color is not so good, but I know it will fall at a very high rate dye it with the etopside - but why do I care.
I will get back to some important points about hair that people take for granted, but first Doctor -------------, I want to say that you were always so respectful of my hair, never saying anything. It is good not to say anything. Truly. I remember the first day I came in wearing a scarf, I was so embarrassed. Had I picked a good cancer scarf. Did I look OK. I never tied a scarf like that in my life. I had spent several hours practicing. I thought you would be taken aback, but you did not even flinch. Everyone else had to comment, but not you and I was so grateful. You did not even bat an eye when you saw me at the Wawa or caught me without warning in the hospital bed.
It was the right way. Comments on my hair are not appreciated unless initiated by me. Don't tell me you can't tell I am hair challenged. Don't tell me it looks good because I do not know many women who would choose this look. In America many are obsessed with their hair. Once I was at work and the group of students and teachers we were asked how many died their hair (it was a very large group) and nearly all said they did (including me).
So in all the years, you only once said anything about my hair. You said, when I asked about my lack of hair after years, that yes, I had probably suffered permanent hair loss, but it would grow in a little. You were right. I appreciated the candor.
So finally, back to today, I said to you, "Look my hair is falling out." You gave a mild reaction. I said because I have to try to make levity out of all situations, "I finally understand why men who are in this situation shave it all off and you said, "Well if you do that it makes it look like it was intentional." I said, "In this case, I can't pull it off." But you, know I prefer it all off. I hate male pattern baldness.
Strangely enough, since I am recovered from the decadron highs and lows people come up to me again to talk about their cancer and their hair loss. It is one of the powers of the bald head. As I have stated, I have the power and I have the responsibility to listen. Though when you are permanently or seriously bald people (except you) make constant unwelcome comments, the newly balding are simply obsessed with their own situation and need advice, mainly about scarves and hats. This one very nice lady has approached me several times recently and I demonstrated to her how I tie scarves which is different from anyone else I have ever seen.
This is no interest to you, but for many it is all about the hair. This woman could have talked for an hour about the hair.
You know what I told her at the end. I told her right now it is all about the hair, but it is not about the hair. Dr. __________ it is nothing about the hair. You know that and I appreciate that. I appreciate that you don't even act like you notice. Because it is not about the hair. It is about battling cancer and staying alive to raise your children. It is about being a good person.
No one should be judged by their hair or their looks. Cancer destroys the looks society craves, but we have the responsibility to transform ourselves and be the change we want in the world so that our spirits outshine our bald heads (a little joke).
as always, and very sincerely, Mary
I read Cicero used the term as always. It is true I am as always.
I want to begin by saying I have always thought the best of you and any day I did not, I was in the wrong. I hope you know that I appreciate that you have a tremedously stressful and high skill profession and a very important one.
Today, I pointed out to you that I had lost a lot of hair due to etopside phosphate. This chemotherapeutic agent is a very strange drug that apparently does not achieve a consistent level in the blood stream of patients and is therefore, difficult to dose. It is a topomerase inhibitor (hence the name) and apparently needs more expose to work as it only works in the S phase of the cell cycle. Because of this strange behavior and this feeling I had not gotten a large enough dose to help my brain tumors (etopside penetrates the central nervous system), I was very surprised when my meager hair started falling out. I even signed a release warning it would fall out, but did not really believe it. As you know, this is not the first time I had my hair fall out so I should not be surprised.
My hair completely fell out in the summer of 2001 when I was being treated with taxtotere. I remember you very solemnly coming in and telling me that my hair would really fall out in two weeks time. I had read this, but I still said, "Do you really think so?" I remember it so well - the room, where I was sitting, where you were sitting Those were good days. In fact, I remember pretty much every thing you have ever say to me though I am always in such a rush to make my points I don't seem as though I am listening. I felt you needed to personally reiterate this so I would know or really accept it. As I was leaving that day (it was my first day of chemo), you asked from the door of your office if I needed anything or if I needed any questions answered. Of course, true to form, I did have a question about a hypersensitivity reaction that had been alluded to by a nurse. You don't remember, but I remember it like it was yesterday. I went to my parents house that weekend terrified the whole time (thinking I would be sitting at dinner and all my hair would fall out or I would have to be hospitalized far from my doctor after the first round of chemotherapy) and as you said, like clockwork, my hair fell out in clumps at the two week mark. I would run my fingers through my hair and it would come out by the thousands. I thought it was fascinating , but awful. By the end of the weekend I had no hair. Hair, hair everywhere. Hair thrown out the window on the Pennsylvania Turnpike, hair clogging drains. No wonder women have their heads shaved. Before this experience, I thought I might get lucky or that they were being dramatic. All hair comes off and all cancer patients know this, but all hair falls off. This surprised me I retained my eyebrows for a year , but when a very sweet friend died of colorectal cancer, I cried so much that my eyebrows and eyelashes were all gone. That is what makes you look blank. To this day, I want my eyebrows back. I never told you, but my son's dermatologist talked me into this drug that grows eyebrows on a famous model. I was always fascinated by it. It cost 120 dollars and it DID NOT WORK. I guess it was destined to fail since I was on chemotherapy, but he thought it might.
I always hid my lack of hair from my you, until once I was in the hospital for lymphedema and I did not know you visited patients in their beds and you caught me bald. I think you caught me bald in the Wawa once with your daughter. I was becoming increasingly lazy about the scarf. I dashed off quickly in the Wawa because I feared intruding in your private time. You probably don't remember. After I was caught, I increasingly ran around bald. My biggest fear was you seeing me. Why, I really can't explain. I was so scared you would react I guess. My students didn't mind, they never stared and were very cool with their bowling ball head, blank faced teacher, but the people outside, especially in retail establishments were and still are hard to deal with. Gawks, dropped jaws, stares, gratuitous smiles, questions and long cancer stories - you name it. But you know, I developed an unconscious method of looking down and it helped and I came to see listening to others who have had cancer as part of my work in life. I could tell they needed to tell their story.
As I grew a little more hair during the less harsh navelbine treatment, it was different, but still noticed. Once someone made fun of me from a car. I have been called a man many times, even a strange man. Perhaps because I was wearing a woman's outfit? I do dress like a girl. I always feel young inside, you know like I am thirty, I feel I have a young personality. But, outside, I look like a seventy year old man. Do you know, that I see my reflection in the side of the NMR superconducting magnet (it has a huge silver dewar) of our NMR spectrometer at work, I will be surprised because I see a seventy year old man. I don't know who it is. After eight years. I don't know who he is. I say, "who is that old man and then I am surprised - it is me!!! " Why does it surprise me? I think I never came to grips with it, I avoid looking at it just like my partially removed breast.
For awhile, I died the peach fuzz hair I had developed blond - it was extremely fun. I had no qualms. When I went to the hair place (first time after eight years - it is one thing I have saved on - hair cuts, shampoos, styling, conditioners, time in the shower - bald head has very easy upkeep) they made me sign a waver because they thought it would fall out and refused to dye it blond because it would be less visible. I said quite emphatically, that they did not understand my goal. A. I did not care if it fell out and B. I wanted it to look less visible. She could not get out of her mindset that she was trying to make it look normal which was impossible. It made me look more bald, but less like an eighty year old man. Now the color is not so good, but I know it will fall at a very high rate dye it with the etopside - but why do I care.
I will get back to some important points about hair that people take for granted, but first Doctor -------------, I want to say that you were always so respectful of my hair, never saying anything. It is good not to say anything. Truly. I remember the first day I came in wearing a scarf, I was so embarrassed. Had I picked a good cancer scarf. Did I look OK. I never tied a scarf like that in my life. I had spent several hours practicing. I thought you would be taken aback, but you did not even flinch. Everyone else had to comment, but not you and I was so grateful. You did not even bat an eye when you saw me at the Wawa or caught me without warning in the hospital bed.
It was the right way. Comments on my hair are not appreciated unless initiated by me. Don't tell me you can't tell I am hair challenged. Don't tell me it looks good because I do not know many women who would choose this look. In America many are obsessed with their hair. Once I was at work and the group of students and teachers we were asked how many died their hair (it was a very large group) and nearly all said they did (including me).
So in all the years, you only once said anything about my hair. You said, when I asked about my lack of hair after years, that yes, I had probably suffered permanent hair loss, but it would grow in a little. You were right. I appreciated the candor.
So finally, back to today, I said to you, "Look my hair is falling out." You gave a mild reaction. I said because I have to try to make levity out of all situations, "I finally understand why men who are in this situation shave it all off and you said, "Well if you do that it makes it look like it was intentional." I said, "In this case, I can't pull it off." But you, know I prefer it all off. I hate male pattern baldness.
Strangely enough, since I am recovered from the decadron highs and lows people come up to me again to talk about their cancer and their hair loss. It is one of the powers of the bald head. As I have stated, I have the power and I have the responsibility to listen. Though when you are permanently or seriously bald people (except you) make constant unwelcome comments, the newly balding are simply obsessed with their own situation and need advice, mainly about scarves and hats. This one very nice lady has approached me several times recently and I demonstrated to her how I tie scarves which is different from anyone else I have ever seen.
This is no interest to you, but for many it is all about the hair. This woman could have talked for an hour about the hair.
You know what I told her at the end. I told her right now it is all about the hair, but it is not about the hair. Dr. __________ it is nothing about the hair. You know that and I appreciate that. I appreciate that you don't even act like you notice. Because it is not about the hair. It is about battling cancer and staying alive to raise your children. It is about being a good person.
No one should be judged by their hair or their looks. Cancer destroys the looks society craves, but we have the responsibility to transform ourselves and be the change we want in the world so that our spirits outshine our bald heads (a little joke).
as always, and very sincerely, Mary
I read Cicero used the term as always. It is true I am as always.
On the Topic of Decadron
Dear Dr. ________________________
The subject of decadron is a topic that is very heavy on my mind these days. I did not adapt well as a patient and had many troubles. I am sure many factors entered into my maladaption, however, one thing I know is that decadron was a big factor. I was on decadron for many years and for many of those years every week. Though they were relatively low doses, they affected me dramatically. I went through two or three days a week of extreme high, almost mania and it was not a good high. The drug of course was given to prevent the allergic to reaction to two of the primary chemotherapeutic agents I take. Though some people may just clean out their closets and become extremely domestic, I on the other hand, developed somewhat grandiose schemes, even buying a red volvo with a spoiler on the back (I love it, but I would never have bought it - used thank God) and a dog who was extremely ill (I mean almost died) and I bought him even though he had symptoms and was on antibiotic. I also love the dog. He is the smile at the end of the day. So somethings ended up OK, but the worst things that I regret was the overly assertive behavior I exhibited toward you at times. Panicking, calling you whenever I got sick. Writing you excessively and sometimes in a negative tone about things. One thing I must say to you my long time doctor, is that I bear you no ill will. I was going through a bad time that I had little control over. I am deeply sorry about that time, but I know when I was off decadron for two weeks things started to drastically change for me. Though I was attempting change in a variety of ways, trying to regenerate my compassion and become more spiritual, I know I could not have done it without stepping off that decadron roller coaster each week.
I know it was predominantly from the decadron. It seemed normal to me to be on an almost manic high for two or three days and then to crash into a very down state. I constantly cried and felt my situation was dismal. I was regularly panicking, shaking. I was in such utter terror that I grabbed onto anytthing that made me feel better - you made me feel better so I relied very highly on you. I needed you or I would not have survived.
When I have mentioned this to you, I sense you do not think it is important or you do not think this is credible. I wonder if my emotional state made me less credible, but I am a very hard working, meticulous person. Even in the bad times, all my ideas are backed up by the literature. I was trained in graduate school to back up every proposal with literature. I have done this. Even on this score. Yet, I feel you do not accept my knowledge of this situation.
My family can attest to the quality of my life. It was very poor, though I was good at faking. I do not have a perfect life now, but it is managable.
I was very fortunate the day you came in to check a carboplatin reaction and gave me solumedrol and explained the halflives. I had asked about this in the past to be told they were the same. I blame myself though because I pride myself on meticulous research and had not done it thoroughly. But learning that the halflife ws only 12 hours for solumedrol, changed my life. I asked to go on it, and the rest is history. Do I feel well all the time, no I do not, see the next letter, but I can tell you that I do not experience that rollerr coaster, I put great thought into this letter. After getting off decadron, I thought better, wrote better almost never felt depressed or overly euphoric. Was much happier and people could see it. Ask your colleagues for I know you find this hard to believe, but I know it.
I don't say it to be right. I was not right to not know about the drug. I say it to help other people in the same position.I have read extensively that coritico sterroids can cause psychiatric problems including mania, depression etc. I took them every week for seven years or so. I feel that patients who have these drugs should be told extensively of the potiential side effects and some consideration should be given perhaps to the personality of the patient (I am a little intense high strung) and perhaps to the prior psychiatric history of the patient. I think this is important in the choice of steroid though they have their obvious importance in reducing inflamation. They are truly the wonder drug, that works wonders, but they are also the most powerful drug in terms of side effects that I have ever taken and this includes taxotere, navelbine, carboplatin, temodar and now, etopside.
My second reason is personal. I feel that a medical problem requires a medical solution. I take responsibility for the lack of research, but I also feel I really could not see what it was doing to me. The drug itself altered my thinking and I came to believe it was how cancer patients felt, but I believe that in a medical world, there should be more understanding at least in retrospect about a medical problem and greater recognition of the source of the problem. To some extent I could not get out of it and I tried every week. I did not have perspective on it, until I was free of it. I would really hope that you could see this one day. I hope one day to be judged as who I am, for my information to be taken and considered out of this context.
This problem unfortunately damaged my relationship with you and my relationship with others. It makes me sad. I hope one day you can view this as a largely medical problem, see me for who I am now which is who I was before I was treated and listen to my learning, research and experience in a fresh context. That is my dream and hope. I feel I lost a tremendous amount over the years. I realize it is hard to separate negative events from this horrible misery I was in, from the real me who I think you only know a little of.
I do not see the years as bad. I see a very great and successful collaboration and I thank God the chemistry part of my brain is still working, though lately I understand certain aspects of chemistry I have been studying for years better. I am grateful to you for my life and I never changed inside. When I rejected by people, told I was a bad person by some and that I was some things I will not even mention, I knew inside it was not true. People seldom saw me the me my family and students know, which was my great frustration of my life.
Sincerely, as always, your patient, Mary
The subject of decadron is a topic that is very heavy on my mind these days. I did not adapt well as a patient and had many troubles. I am sure many factors entered into my maladaption, however, one thing I know is that decadron was a big factor. I was on decadron for many years and for many of those years every week. Though they were relatively low doses, they affected me dramatically. I went through two or three days a week of extreme high, almost mania and it was not a good high. The drug of course was given to prevent the allergic to reaction to two of the primary chemotherapeutic agents I take. Though some people may just clean out their closets and become extremely domestic, I on the other hand, developed somewhat grandiose schemes, even buying a red volvo with a spoiler on the back (I love it, but I would never have bought it - used thank God) and a dog who was extremely ill (I mean almost died) and I bought him even though he had symptoms and was on antibiotic. I also love the dog. He is the smile at the end of the day. So somethings ended up OK, but the worst things that I regret was the overly assertive behavior I exhibited toward you at times. Panicking, calling you whenever I got sick. Writing you excessively and sometimes in a negative tone about things. One thing I must say to you my long time doctor, is that I bear you no ill will. I was going through a bad time that I had little control over. I am deeply sorry about that time, but I know when I was off decadron for two weeks things started to drastically change for me. Though I was attempting change in a variety of ways, trying to regenerate my compassion and become more spiritual, I know I could not have done it without stepping off that decadron roller coaster each week.
I know it was predominantly from the decadron. It seemed normal to me to be on an almost manic high for two or three days and then to crash into a very down state. I constantly cried and felt my situation was dismal. I was regularly panicking, shaking. I was in such utter terror that I grabbed onto anytthing that made me feel better - you made me feel better so I relied very highly on you. I needed you or I would not have survived.
When I have mentioned this to you, I sense you do not think it is important or you do not think this is credible. I wonder if my emotional state made me less credible, but I am a very hard working, meticulous person. Even in the bad times, all my ideas are backed up by the literature. I was trained in graduate school to back up every proposal with literature. I have done this. Even on this score. Yet, I feel you do not accept my knowledge of this situation.
My family can attest to the quality of my life. It was very poor, though I was good at faking. I do not have a perfect life now, but it is managable.
I was very fortunate the day you came in to check a carboplatin reaction and gave me solumedrol and explained the halflives. I had asked about this in the past to be told they were the same. I blame myself though because I pride myself on meticulous research and had not done it thoroughly. But learning that the halflife ws only 12 hours for solumedrol, changed my life. I asked to go on it, and the rest is history. Do I feel well all the time, no I do not, see the next letter, but I can tell you that I do not experience that rollerr coaster, I put great thought into this letter. After getting off decadron, I thought better, wrote better almost never felt depressed or overly euphoric. Was much happier and people could see it. Ask your colleagues for I know you find this hard to believe, but I know it.
I don't say it to be right. I was not right to not know about the drug. I say it to help other people in the same position.I have read extensively that coritico sterroids can cause psychiatric problems including mania, depression etc. I took them every week for seven years or so. I feel that patients who have these drugs should be told extensively of the potiential side effects and some consideration should be given perhaps to the personality of the patient (I am a little intense high strung) and perhaps to the prior psychiatric history of the patient. I think this is important in the choice of steroid though they have their obvious importance in reducing inflamation. They are truly the wonder drug, that works wonders, but they are also the most powerful drug in terms of side effects that I have ever taken and this includes taxotere, navelbine, carboplatin, temodar and now, etopside.
My second reason is personal. I feel that a medical problem requires a medical solution. I take responsibility for the lack of research, but I also feel I really could not see what it was doing to me. The drug itself altered my thinking and I came to believe it was how cancer patients felt, but I believe that in a medical world, there should be more understanding at least in retrospect about a medical problem and greater recognition of the source of the problem. To some extent I could not get out of it and I tried every week. I did not have perspective on it, until I was free of it. I would really hope that you could see this one day. I hope one day to be judged as who I am, for my information to be taken and considered out of this context.
This problem unfortunately damaged my relationship with you and my relationship with others. It makes me sad. I hope one day you can view this as a largely medical problem, see me for who I am now which is who I was before I was treated and listen to my learning, research and experience in a fresh context. That is my dream and hope. I feel I lost a tremendous amount over the years. I realize it is hard to separate negative events from this horrible misery I was in, from the real me who I think you only know a little of.
I do not see the years as bad. I see a very great and successful collaboration and I thank God the chemistry part of my brain is still working, though lately I understand certain aspects of chemistry I have been studying for years better. I am grateful to you for my life and I never changed inside. When I rejected by people, told I was a bad person by some and that I was some things I will not even mention, I knew inside it was not true. People seldom saw me the me my family and students know, which was my great frustration of my life.
Sincerely, as always, your patient, Mary
The Demise of Medicine
Dear Doctor _____________,
A week ago I read an article in The Philadelphia Inquirer about the extreme negative impact of insurance rules and red tape that is making the practice of medicine outrageously arduous. As a response to this article and as a response to my observations made during my life as an eight year metastatic breast cancer patient I wrote a letter to the editor of The Philadelphia Inquirer which has apparently not published. Basically, I stated something like the following.....
"I have been a patient with a serious disease for eight years and during that time I have watched as the practice of medicine has degraded from an experience where kindness, patience, knowledge and compassion and collaboration generally ruled the day to very rushed, harried, splintered, highly delegated practice. I have watched as practices have grown and grown to the point of bursting, hiring more and more people and never creating the highest quality care they had at the beginning, in spite of great effort. I have been told (and I believe this is true) that this very exponentially changing situation (it has gotten considerably worse in the last months) is due to the extreme and ever changing red tape that is created by the insurance companies. I wonder why such red tape has to exist for patients with such serious diseases? As one of my brain surgeons stated in frustration, 'I don't know why I have to pre-certify a brain MRI for a patient with known brain cancer ' "
"I recently visited an office that did not take insurance with my son. There was no waiting, there was no hassle. The doctor examined my son for forty-five minutes and answered all questions. He was truly acting as a physician. I teach pre-medical students many of whom immediately enter medical school. I have never heard one state she or he wishes to be the manager of an outrageously stressful business with little or no patient care. No, they emphatically state the ideals of wishing to altruistically work with patients. The speak of it passionately and seek service work along these lines. Obviously, insurance is needed in cancer clinics and the like, but I do not understand why getting the drugs for essential, life saving and life lengthening treatments and the scans needed to establish these treatments require such ridiculous and ever changing policies. None of this is good for any one, least of all the patients."
I hope you know my doctor, that I wrote this in support of you and others, but especially for you and your collegues. You sometimes seems so overburdened with these issues and so different from the person I met eight years ago. It breaks my heart and though you may not believe it, I feel great empathy toward you.
I long to help. I have tried to help and obviously succeeded at nothing, but I want to help you. I want to make medicine better. For you because you have worked so hard to lengthen my life and just for all the times you went above the call of duty. I want to do it just as much for the other patients who need a doctor of your experience, knowledge and work ethic. You told me when I was first a patient that I was am integral part of the treatment team and I need to continue the collaboration to survive.
But beyond that, I see the demise of the medical system in these problems. As you know, I spent the better part of a year wrestling with a large insurance company, even meeting with the vice-presidents. I read up on the law and learned about how these companies are essentially immune from lawsuit due to the inability of wronged patients to sue them in the state courts.I argued with them, had thousands of people write and to little avail. I went up to the high towers of the huge insurance giants and sat and argued. I prepared for months. I thought if they heard the appeal of a real cancer patient they would listen, but they held steadfast that there systems they had created for you and other doctors were easily learned and extremely simple to operate. But clearly they are not. I see nothing but tension and people racing around.
I am writing this to tell you that I know it is terrible. That I want to do something. I know I have failed at this. I know this is because when I worked hard to get the herceptin coverage back for all the patients with metastatic cancer at your office, the insurance companies told me that we need not worry because our physicians will take care of our problems. But, when we go to our physicians they are not ammenable and tell us many things can't be done and they are not willing to try. I know the insurance companies send us unintelligible forms that show the tentative approval of the coverage of tests and scans (but we can't readily tell which test or scan). When I have directly tried to induce change they have done this. I find patients don't get it and the insurance companies know it. I liken it to the dark ages where the Mass was said in Latin and the peasants were kept completely ignorant. It is a form of power. The insurance companies have said to me that no one complains. The governors office of the state of Pennsylvania told me that only two or three people/physicians complained about the insurers in one year. I got no response from my representatives - state or federal. I even wrote presidents.
I tried and tried and tried and tried.
But, I stil feel passioniately about it. I know I have survived a long time with what was initially defined as a terminal, incurable disease by becoming highly knowledgeable and in large part by collaborating with you on medical issues, by knowing you. I think of today and how quickly we got through issues and arrived at a different way of dosing my etopside. It was the collaboration of two people who know each other and can communicate quickly.
I meant you no disrespect when I asked you why things were getting worse, why you seemed so harried. I really did not, I just could not help noticing it. I hope you know I think of it all the time. I am not an ungrateful patient who believes that my healthcare is easy or my right or anything like that. I feel privledged to be you patient and I know the good doctors are going to leave and the new doctors are going to be dismayed. You are right, the insurance situation is going to ruin the medical system and yes, kill patients.
I vow to you that I will keep fighting to make it change and to make others understand this life threatening disaster that makes your work so overwhelming and relentless. The extreme power of the insurance companies have to be broken , they have to cease acting as physicians and put the patients first.
as always, sincerely, your patient, Mary
A week ago I read an article in The Philadelphia Inquirer about the extreme negative impact of insurance rules and red tape that is making the practice of medicine outrageously arduous. As a response to this article and as a response to my observations made during my life as an eight year metastatic breast cancer patient I wrote a letter to the editor of The Philadelphia Inquirer which has apparently not published. Basically, I stated something like the following.....
"I have been a patient with a serious disease for eight years and during that time I have watched as the practice of medicine has degraded from an experience where kindness, patience, knowledge and compassion and collaboration generally ruled the day to very rushed, harried, splintered, highly delegated practice. I have watched as practices have grown and grown to the point of bursting, hiring more and more people and never creating the highest quality care they had at the beginning, in spite of great effort. I have been told (and I believe this is true) that this very exponentially changing situation (it has gotten considerably worse in the last months) is due to the extreme and ever changing red tape that is created by the insurance companies. I wonder why such red tape has to exist for patients with such serious diseases? As one of my brain surgeons stated in frustration, 'I don't know why I have to pre-certify a brain MRI for a patient with known brain cancer ' "
"I recently visited an office that did not take insurance with my son. There was no waiting, there was no hassle. The doctor examined my son for forty-five minutes and answered all questions. He was truly acting as a physician. I teach pre-medical students many of whom immediately enter medical school. I have never heard one state she or he wishes to be the manager of an outrageously stressful business with little or no patient care. No, they emphatically state the ideals of wishing to altruistically work with patients. The speak of it passionately and seek service work along these lines. Obviously, insurance is needed in cancer clinics and the like, but I do not understand why getting the drugs for essential, life saving and life lengthening treatments and the scans needed to establish these treatments require such ridiculous and ever changing policies. None of this is good for any one, least of all the patients."
I hope you know my doctor, that I wrote this in support of you and others, but especially for you and your collegues. You sometimes seems so overburdened with these issues and so different from the person I met eight years ago. It breaks my heart and though you may not believe it, I feel great empathy toward you.
I long to help. I have tried to help and obviously succeeded at nothing, but I want to help you. I want to make medicine better. For you because you have worked so hard to lengthen my life and just for all the times you went above the call of duty. I want to do it just as much for the other patients who need a doctor of your experience, knowledge and work ethic. You told me when I was first a patient that I was am integral part of the treatment team and I need to continue the collaboration to survive.
But beyond that, I see the demise of the medical system in these problems. As you know, I spent the better part of a year wrestling with a large insurance company, even meeting with the vice-presidents. I read up on the law and learned about how these companies are essentially immune from lawsuit due to the inability of wronged patients to sue them in the state courts.I argued with them, had thousands of people write and to little avail. I went up to the high towers of the huge insurance giants and sat and argued. I prepared for months. I thought if they heard the appeal of a real cancer patient they would listen, but they held steadfast that there systems they had created for you and other doctors were easily learned and extremely simple to operate. But clearly they are not. I see nothing but tension and people racing around.
I am writing this to tell you that I know it is terrible. That I want to do something. I know I have failed at this. I know this is because when I worked hard to get the herceptin coverage back for all the patients with metastatic cancer at your office, the insurance companies told me that we need not worry because our physicians will take care of our problems. But, when we go to our physicians they are not ammenable and tell us many things can't be done and they are not willing to try. I know the insurance companies send us unintelligible forms that show the tentative approval of the coverage of tests and scans (but we can't readily tell which test or scan). When I have directly tried to induce change they have done this. I find patients don't get it and the insurance companies know it. I liken it to the dark ages where the Mass was said in Latin and the peasants were kept completely ignorant. It is a form of power. The insurance companies have said to me that no one complains. The governors office of the state of Pennsylvania told me that only two or three people/physicians complained about the insurers in one year. I got no response from my representatives - state or federal. I even wrote presidents.
I tried and tried and tried and tried.
But, I stil feel passioniately about it. I know I have survived a long time with what was initially defined as a terminal, incurable disease by becoming highly knowledgeable and in large part by collaborating with you on medical issues, by knowing you. I think of today and how quickly we got through issues and arrived at a different way of dosing my etopside. It was the collaboration of two people who know each other and can communicate quickly.
I meant you no disrespect when I asked you why things were getting worse, why you seemed so harried. I really did not, I just could not help noticing it. I hope you know I think of it all the time. I am not an ungrateful patient who believes that my healthcare is easy or my right or anything like that. I feel privledged to be you patient and I know the good doctors are going to leave and the new doctors are going to be dismayed. You are right, the insurance situation is going to ruin the medical system and yes, kill patients.
I vow to you that I will keep fighting to make it change and to make others understand this life threatening disaster that makes your work so overwhelming and relentless. The extreme power of the insurance companies have to be broken , they have to cease acting as physicians and put the patients first.
as always, sincerely, your patient, Mary
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