It's amazing how many people think that once you have finished treatment, you're done. That everything goes back to normal or at least the way things were before your dreaded diagnosis and hellish treatments. Not so.
I suppose this is understandable coming from someone who has never had cancer and dealt with the significant change that you experience emotionally. I think this is probably worse than the experience of going through treatment and I don't believe that life is EVER quite the same again.
This is even more the case in dealing with HPV related cancers. The issues of shame, guilt, depression and anxiety remain long after treatment is complete. The stigma attached to an STD/STI makes it difficult to openly discuss your situation. Often, you're relegated to a small group of people. In my case, this was mainly one woman whom I met through an anal cancer forum. I had been responding to questions on what was mainly a cervical cancer forum and simply could not get the support and understanding that I needed because although these individuals could understand the HPV end of it, they had no experience with the treatments, side effects and other issues specific to anal cancer.
To be honest, there was a short period of time there when I found myself getting upset when women would write in hysterical, or close to it, after receiving a diagnosis of HPV. They didn't have any lesions to be concerned about, no need for any procedures or more drastic measures only the diagnosis of HPV.
Knowing unfortunately in exquisite detail just how bad all of these treatments can be and to get a diagnosis of HPV induced invasive cancer is much different than a diagnosis of HPV as I'm sure you can well imagine. It was at that time that I just had to take a break. I could not provide the compassion and understanding that these women needed because all I really wanted to do was tell them to get a grip, that things could be far worse and that I knew just how much worse and yet here they were whining over the diagnosis alone.
There are certain aspects in dealing with anal cancer not experienced by others with HPV induced cancers. For one thing, having to decide whether or not to have a colostomy. This is a major life changing event and despite the true courage of those who have had this procedure done, your ability to control your bowels will never be "normal" again.
Sometimes during treatment for anal cancer but definitely afterwards, you deal with an inability to control your bowels at all. I spent countless days, weeks, months basically chained to the bathroom and afraid to step out in public for fear of an "accident". When you have an "accident" in public it is something that you will never forget. It tends to stay with you unconsciously and there is also an unconscious trepidation when you do go out in public even after you've managed to get things under control. That fear lingers in the back of your mind. You find yourself scouting out just where the bathrooms are regardless of the venue. Even if you are at home by yourself and can't make it to the bathroom in time those feelings of humiliation and an assault to one's self esteme still occur.
(to be continued)
A site for individuals to share in the conversation regarding life with HPV, concerns about HPV diagnosis and treatment, and to receive support and feedback from others. This site is created in conjunction with The HPV Support Network website which offers a vast array of information for both patients and providers.
Friday, December 4, 2009
Tuesday, September 8, 2009
The Battle With the Beast
Well I'm now dealing with the nadir from chemo. The nadir is the lowest point when your blood levels drop including your white and red blood cells and your platelets which help you to clot.
Because of the lack of red cells which carry oxygen to everywhere in the body, I'm short of breath, extremely fatigued and can barely even move on some days. I had a few good days last week and so when a day like this shows up again it can be very discouraging. I usually cry because it isn't two steps forward and one step back but more like ten steps back.
I try to remind myself that this is par for the course, that I have to allow my body time to heal. But so much of my life has already been on hold. So much if not all of my life has been consumed with daily visits, actually twice a day for external radiation treatments, visits to the hematologist, tests and other procedures that I'm just tired of it all.
During my first round of chemo I received the standard 5-FU and Mitomycin. This was delivered via a chest port which had to be inserted under the skin and allowed for connection of an infusion pump to slowly deliver the deadly chemicals over a period of four days. After the second day, I was supposed to return to the hematologists office and have the pump refilled with the next two days of solution.
Imagine my astonishment the night before that visit when I opened the fanny pack, took out the pump and saw that there was more than half the fluid left. The following day when I arrived at the hematologists and showed the nurse she went white as a sheet and immediately got on the phone. Long story short, the previous nurse had incorrectly set the pump and I had been under-dosed for two days. This meant that in order for me to receive the required dosage of the 5-FU they would have to triple the rate of infusion and basically overdose me for the remaining two days.
During the following week the hematologist said that the mouth sores, a common side effect were probably the worst he'd ever seen. Within a few days my ankles had swollen up so severely that I had pitting edema and was instructed by the hematologist to go to the emergency room. He was afraid I'd developed a blood clot in my leg, also a side effect of the chemo.
They did an ultrasound which was normal. Then the focus shifted to heart damage and congestive heart failure. I had to undergo an echocardiogram which also proved to be normal. Still the shortness of breath continued and I was put on a diuretic to help reduce the ankle swelling. While I had received the required dose of chemo during those four days, the fact remained that I was overdosed for two of them. How could that NOT have an effect and be causing all these new symptoms?
The hematologist informed me he would have to reduce the dosage on my second round of chemo because of these reactions. Well that couldn't be good. How was this going to effect my prognosis, my outcome? Could this "mistake" now cost me my life because I could not receive the necessary amount of medication during the second course?
It is upsetting enough to know you are in the fight of your life but to then have someone, through carelessness, make a mistake which could potentially compromise that fight is devastating.
Next week I will return to have my blood counts checked once again. I am hoping that they have increased to a level that would allow me to have this chest port removed. I'm also hoping they are increased because that would mean I will be feeling better and have increased energy and strength to get through the day, each day, one at a time.
Because of the lack of red cells which carry oxygen to everywhere in the body, I'm short of breath, extremely fatigued and can barely even move on some days. I had a few good days last week and so when a day like this shows up again it can be very discouraging. I usually cry because it isn't two steps forward and one step back but more like ten steps back.
I try to remind myself that this is par for the course, that I have to allow my body time to heal. But so much of my life has already been on hold. So much if not all of my life has been consumed with daily visits, actually twice a day for external radiation treatments, visits to the hematologist, tests and other procedures that I'm just tired of it all.
During my first round of chemo I received the standard 5-FU and Mitomycin. This was delivered via a chest port which had to be inserted under the skin and allowed for connection of an infusion pump to slowly deliver the deadly chemicals over a period of four days. After the second day, I was supposed to return to the hematologists office and have the pump refilled with the next two days of solution.
Imagine my astonishment the night before that visit when I opened the fanny pack, took out the pump and saw that there was more than half the fluid left. The following day when I arrived at the hematologists and showed the nurse she went white as a sheet and immediately got on the phone. Long story short, the previous nurse had incorrectly set the pump and I had been under-dosed for two days. This meant that in order for me to receive the required dosage of the 5-FU they would have to triple the rate of infusion and basically overdose me for the remaining two days.
During the following week the hematologist said that the mouth sores, a common side effect were probably the worst he'd ever seen. Within a few days my ankles had swollen up so severely that I had pitting edema and was instructed by the hematologist to go to the emergency room. He was afraid I'd developed a blood clot in my leg, also a side effect of the chemo.
They did an ultrasound which was normal. Then the focus shifted to heart damage and congestive heart failure. I had to undergo an echocardiogram which also proved to be normal. Still the shortness of breath continued and I was put on a diuretic to help reduce the ankle swelling. While I had received the required dose of chemo during those four days, the fact remained that I was overdosed for two of them. How could that NOT have an effect and be causing all these new symptoms?
The hematologist informed me he would have to reduce the dosage on my second round of chemo because of these reactions. Well that couldn't be good. How was this going to effect my prognosis, my outcome? Could this "mistake" now cost me my life because I could not receive the necessary amount of medication during the second course?
It is upsetting enough to know you are in the fight of your life but to then have someone, through carelessness, make a mistake which could potentially compromise that fight is devastating.
Next week I will return to have my blood counts checked once again. I am hoping that they have increased to a level that would allow me to have this chest port removed. I'm also hoping they are increased because that would mean I will be feeling better and have increased energy and strength to get through the day, each day, one at a time.
Sunday, August 9, 2009
Gardadsil versus Cervarix – The Fight Against Cervical Cancer
Gardasil is a vaccine produced by Merck Pharmaceuticals for the prevention of cervical cancer caused by HPV, the Human Papillomavirus. There are over 100 different strains of HPV causing everything from the common wart found on the hands to cervical, vaginal, vulvar and anal cancers. Research continues to discover new cancers caused by this virus including oral, head/neck and certain lung cancers.
After extensive testing, Gardasil was approved for use in girls and young women in the US by the FDA in 2006. By the end of 2008, twenty-three million vaccines had been distributed for use. While there have been adverse effects reported after administration of the vaccine, both the FDA (Food and Drug Administration) and the CDC (Centers for Disease Control) have concluded that none of the 32 deaths reported were linked to the vaccine. Seven of these deaths were unable to be confirmed through a death certificate and the remaining deaths were from unrelated issues, or preexisting medical conditions.
Cervarix, also an HPV vaccine, is manufactured by GlaxoSmithKline located in the UK. It has currently been approved in 90 countries in Europe yet awaits approval by the FDA for use in the US.
Cervarix is said to protect against five of the high risk HPV strains which are known to cause cervical cancer. It will not however provide as much protection against genital warts. Gardasil currently covers two of these high risk strains as well as two strains causing genital warts. While Cervarix approval for use is expected this autumn, Gardasil, already approved for use in girls and women ages 9 through 26, awaits approval for use in boys and young men.
While not approved for the prevention of anal cancers, 90 to 99% of which are caused by HPV, Gardasil’s protection was extended by the FDA last year to include vulvar and vaginal dysplasias (abnormal cell growth) and cancers. It would make sense that the vaccine would also aid in prevention of anal and other HPV related cancers since it is these strains of the virus that cause the cancer. The vaccine works against these strains and it would appear this to be the case regardless of which body part is affected. Women having cervical involvement with HPV show a 37% increased risk of developing anal involvement.
Unfortunately, many parents are still not getting their daughters vaccinated. This may be a result of misinformation regarding the vaccine, or the belief that if their daughter remains celibate she won’t have to worry. Men transmit the virus and are typically always asymptomatic. There is currently no wide-scale commercially available test for men to determine if they have the virus. So, while celibacy is an option, it is not one that will prevent their daughters from contracting HPV. Why? Because there is no way to determine if her future husband has HPV and can just as easily remain celibate and still contract the virus from her husband. Parents can’t control nor test for the future husbands HPV status.
The fact is, vaccination has become an issue about sex more than prevention for the child. Do parents have these same types of issues when vaccinating their child against the chickenpox virus or the flu virus? No. Most information about HPV relates to cervical cancer, and while this is one of the significant cancers caused by the virus there are, as mentioned above, many others. Some believe that sexual intercourse is required to contract the virus. It is not. Simple skin to skin contact with an area infected with HPV is sufficient for transmission.
Much research is being done about transmission via foamites, inert objects which can carry the virus thus allowing for transmission via other means. This is already considered to be a fact by some within the medical community. With HPV now shown to cause oral and head/neck cancers kissing has not been ruled out as a means of transmission either. Do you prevent your daughter from kissing anyone as well?
The easiest and most significant means of protecting your daughter against the horrors of HPV induced dysplasia or cancer is through vaccination! Ultimately, it will not matter so much which vaccine you choose, just that you choose one!
After extensive testing, Gardasil was approved for use in girls and young women in the US by the FDA in 2006. By the end of 2008, twenty-three million vaccines had been distributed for use. While there have been adverse effects reported after administration of the vaccine, both the FDA (Food and Drug Administration) and the CDC (Centers for Disease Control) have concluded that none of the 32 deaths reported were linked to the vaccine. Seven of these deaths were unable to be confirmed through a death certificate and the remaining deaths were from unrelated issues, or preexisting medical conditions.
Cervarix, also an HPV vaccine, is manufactured by GlaxoSmithKline located in the UK. It has currently been approved in 90 countries in Europe yet awaits approval by the FDA for use in the US.
Cervarix is said to protect against five of the high risk HPV strains which are known to cause cervical cancer. It will not however provide as much protection against genital warts. Gardasil currently covers two of these high risk strains as well as two strains causing genital warts. While Cervarix approval for use is expected this autumn, Gardasil, already approved for use in girls and women ages 9 through 26, awaits approval for use in boys and young men.
While not approved for the prevention of anal cancers, 90 to 99% of which are caused by HPV, Gardasil’s protection was extended by the FDA last year to include vulvar and vaginal dysplasias (abnormal cell growth) and cancers. It would make sense that the vaccine would also aid in prevention of anal and other HPV related cancers since it is these strains of the virus that cause the cancer. The vaccine works against these strains and it would appear this to be the case regardless of which body part is affected. Women having cervical involvement with HPV show a 37% increased risk of developing anal involvement.
Unfortunately, many parents are still not getting their daughters vaccinated. This may be a result of misinformation regarding the vaccine, or the belief that if their daughter remains celibate she won’t have to worry. Men transmit the virus and are typically always asymptomatic. There is currently no wide-scale commercially available test for men to determine if they have the virus. So, while celibacy is an option, it is not one that will prevent their daughters from contracting HPV. Why? Because there is no way to determine if her future husband has HPV and can just as easily remain celibate and still contract the virus from her husband. Parents can’t control nor test for the future husbands HPV status.
The fact is, vaccination has become an issue about sex more than prevention for the child. Do parents have these same types of issues when vaccinating their child against the chickenpox virus or the flu virus? No. Most information about HPV relates to cervical cancer, and while this is one of the significant cancers caused by the virus there are, as mentioned above, many others. Some believe that sexual intercourse is required to contract the virus. It is not. Simple skin to skin contact with an area infected with HPV is sufficient for transmission.
Much research is being done about transmission via foamites, inert objects which can carry the virus thus allowing for transmission via other means. This is already considered to be a fact by some within the medical community. With HPV now shown to cause oral and head/neck cancers kissing has not been ruled out as a means of transmission either. Do you prevent your daughter from kissing anyone as well?
The easiest and most significant means of protecting your daughter against the horrors of HPV induced dysplasia or cancer is through vaccination! Ultimately, it will not matter so much which vaccine you choose, just that you choose one!
Thursday, August 6, 2009
Setting the Record Straight.
I'd like to take a moment to set the record straight regarding some prior posts. Rather than focus my feelings over the distribution of inaccurate information at a particular individual, I chose to use general terms, (i.e. some people instead of this person).
I could have chosen, and still can choose to post this individuals name, and the forum on which she posts but I chose not to. I chose to make it more of a generalized statement so that perhaps other individuals who behave this way might take notice as well.
Hmm. So now I'm labeled as being mad at the world with specific references to this blog and the comments made here. You still don't get it do you? Out of some wharped sense of respect I still will not share your name in a public format such as this but you know who you are.
With respect to my feelings, those of anger in particular, I don't know of anyone who wouldn't be or hasn't been angry over receiving a misdiagnosis or having mistakes made regarding their care/treatment. This is especially true when one misdiagnosis would have cost me my fertility and the life of my daughter along with it!
Do I get upset and at times angry over inaccurate information being given to people about HPV - most certainly. I do not take this lightly because such inaccurate information can, depending upon the content, cost a woman her life!
Anger, though typically thought of as a negative emotion, doesn't have to be negative. Anger can be a great motivator to accomplishing many things. It certainly was being angry that 22 years after my initial diagnosis with HPV that women (and doctors) were still as cluelss now (for the most part) as they were back then that motivated me to write my book which I hope will help untold scores of women and doctors. So anger isn't always a bad thing, but more about what you do with it.
I can assure you that I am not raging at the world. I'm too focused on fighting for my life at the moment. You say that you feel very bad about what I'm going through only to play therapist, analyze my emotional state of mind and then editorialize about it in a public forum! What a disgrace. Obviously you don't feel that badly and aren't the least bit concerned about the negative portrayal you have created about me for others who read that site.
It's a shame, that you had to passive/aggressively utilize my misfortune and difficulties encountered dealing with invasive cancer to vent your negative perceptions and your angry feelings towards me. Very sad indeed.
I could have chosen, and still can choose to post this individuals name, and the forum on which she posts but I chose not to. I chose to make it more of a generalized statement so that perhaps other individuals who behave this way might take notice as well.
Hmm. So now I'm labeled as being mad at the world with specific references to this blog and the comments made here. You still don't get it do you? Out of some wharped sense of respect I still will not share your name in a public format such as this but you know who you are.
With respect to my feelings, those of anger in particular, I don't know of anyone who wouldn't be or hasn't been angry over receiving a misdiagnosis or having mistakes made regarding their care/treatment. This is especially true when one misdiagnosis would have cost me my fertility and the life of my daughter along with it!
Do I get upset and at times angry over inaccurate information being given to people about HPV - most certainly. I do not take this lightly because such inaccurate information can, depending upon the content, cost a woman her life!
Anger, though typically thought of as a negative emotion, doesn't have to be negative. Anger can be a great motivator to accomplishing many things. It certainly was being angry that 22 years after my initial diagnosis with HPV that women (and doctors) were still as cluelss now (for the most part) as they were back then that motivated me to write my book which I hope will help untold scores of women and doctors. So anger isn't always a bad thing, but more about what you do with it.
I can assure you that I am not raging at the world. I'm too focused on fighting for my life at the moment. You say that you feel very bad about what I'm going through only to play therapist, analyze my emotional state of mind and then editorialize about it in a public forum! What a disgrace. Obviously you don't feel that badly and aren't the least bit concerned about the negative portrayal you have created about me for others who read that site.
It's a shame, that you had to passive/aggressively utilize my misfortune and difficulties encountered dealing with invasive cancer to vent your negative perceptions and your angry feelings towards me. Very sad indeed.
Wednesday, August 5, 2009
The Real Toll of Having Cancer.
Unless you have gone through it, I don't think anyone can really understand the complexities of having cancer. Of course people are aware of chemo and radiation but they don't comprehend what those words mean. Yes they know what the simple definitions are, but not what the actual treatment does to a person.
The most common side effect that most people not having had cancer equate with chemotherapy is vomiting. Actually that is much less of a side effect than it used to be. Now even before beginning to administer the chemo they give you an intravenous injection of an anti-nausea medication and, with the wonderful anti-nausea medications on the market such as Zofran I certainly would not put this high on the negative side effects list. Stomatitis which is the development of sores inside the mouth (and which actually occur within the entire digestive tract down to the anus) would have topped my list until last weekend. The mouth sores are so excruciatingly painful that I could open my mouth no more than an inch. Not only were they inside my cheeks but behind my lips in front of my teeth. This made eating anything nearly impossible and my oncologist warned me that he WOULD put my in the hospital if I wasn't at least drinking to stay hydrated. I promptly promised that I would.
Last weekend, I had glanced down at my feet and noticed they were extremely swollen with 3+ pitting edema. This is when you press on the area with your finger and it stays indented with the finger mark. Not good as this indicates the retention of fluid and with chemo, possible blood clots. So off I had to go to the Emergency Room as per my oncologist's orders to rule out any clots. Thankfully no clots were found however the question then became what is causing the edema. I have no prior history of any high blood pressure, kidney problems or heart problems and so the concern was heart damage from the chemotherapy, potentially congestive heart failure.
I had an echocardiogram done today which confirmed that my heart was fine and since the swelling was being controlled with diuretics they will continue to "watch me" to make sure things don't get worse, especially since I have my next course of chemo starting on the 17th. Of course the chemo wipes out your red and white blood cells as well as your platelets. This greatly increases the chances of infection from even the smallest thing since your immune system is basically shot. It also causes anemia which presents with being tired all the time. Exhausted is more like it.
As for the radiation, for my type of cancer (anal) this can cause burns from the front to the back. These burns can be very severe and the pain is intolerable. Your body starts to involuntarily shake because the pain becomes so severe, and pain medications do not totally take that pain away. Going to the bathroom is a nightmare. The urethra can get burned as well and urine passing through it burns like battery acid. Having the urine touch the skin is just as bad, and having a bowel movement, if it's not diarrhea caused by the chemo can feel like you are going to be split in two. The anal fissures which are like papercuts around the anus are very very painful as well and often will bleed.
One would think that you could use Desitin or some other type of cream or ointment, but you cannot have these creams and lotions on the skin during radiation so they must be wiped off. Not sure which is worse, doing without them or having to wipe them off twice a day. Yes, my radiation treatments are twice a day, not once as most people undergo. This is because as my radiation oncologist says "No one goes through Nigro twice!" The Nigro protocol takes its name from the gentleman who developed this protocol for anal cancer and has been in use for over two decades. It involves approximatley 5,400 rads of radiation and chemotherapy with 5-FU and mitomycin. The chemo sensitizes the cells so that the radiation has a high affinity for the cancer cells, unfortunately it also has a higher affinity for other fast growing cells as well such as the lining of your colon, rectum and anus.
The last time I went through this, treatment had to be stopped after 3,000 rads because the pain was simply unbearable. This is a good thing in the sense that not having received the maximum dose then is what has allowed me to receive radiation now. But radiation thins the skin and my skin in that area is already thinned not only from prior radiation but also from the many laser surgeries I have had to treat AIN. The main symptom aside from the radiation burn is the fatigue. When I come home after my morning treatment all I want to do is sleep until I have to go for my afternoon treatment. This however isn't possible because of the other "side effect" - exhorbitant bills!
Instead of sleeping, I'm either on the phone, or having to physically go to the various assistance agencies just to keep the lights on. Oh yes there are numerous agencies and foundations which assist patients with cancer but guess what - not for anal cancer! Your read correctly. They'll help with anything from your medicine co-pays to utility and rent bills but not if your diagnosis is anal cancer. Colorectal sure, which makes no sense to me at all. These foundations which exclude anal cancer include CancerCare, the Patient Advocate Foundation, and the HelpWell Foundation just to name the most notable.
The social workers are supposed to help with this, but frankly, all they do is hand you lists of phone numbers for places to call. Most of the time when you call these numbers, they simply give you more numbers. It is totally exasperating! This is a double whammy for me. In most cases it is the patient who must call because of medical privacy issues. A patient's family member can call, but my daughter is only 17 and is having a hard enough time coping with what she sees me going through each day. She doesn't know what to ask or how to ask, and she certainly is not allowed to substitute for me for those agencies which require the patient's (or the patient's spouse) physical presence. I have no spouse or significant other to do this either and so, I repeat my story (which doesn't help at all emotionally) over and over again to be rejected over and over again.
Because this situation began last July when I found this anal lesion (then in situ), and because I had three surgeries last fall alone (in addition to numerous procedures) the agencies which will help me did so last year and will not help more than once in a 12 month time period. So, until later this year, I'm currently out of luck. Some people might wonder about my book. While the manuscript is currently finished and with the publisher, it's on a bit of a hold right now. This is a self-published book and so I have received no advance royalties or payments which could assist during this current financial crisis. The current state of the economy doesn't help either since there are so many more people than usual applying for assistance with things such as utility bills. My trip to the hospital takes an hour round trip, and the cost for transportation also becomes a major issue especially when I'm having to go twice a day. I doubt anyone knows how difficult it is just to obtain a gas card to help with the travel expense. The receptionist at the radiation facility overheard me talking with the social worker and actually had me follow her to the gas station where she put $20 in our tank.
I am unable to work and am receiving disability. As most know, even without having claimed it (or unemployment) the benefits don't come close to what you earned at your job. It also doesn't help when you have an ex-husband who is self-employed, hasn't had work and therefore cannot pay the child support on a consistent basis. The emotional duress of not knowing these past several months just how much if any of my child support I would be receiving and when has left me hoarding what monies I do have. This has meant compromising the one place possible - the food bill, for fear I'll need another prescription and not have the money. I can't tell you how many nights I've cried myself to sleep, and this isn't helping my immune system!
The co-pay for the oncologist is $50 a visit, so I needed to see him after being in the ER. In addition, I was given new prescriptions, a diuretic to address the edema and potassium resulting from decreased electrolytes from the diuretics. He also had to give me two new pain medication prescriptions so by the time I got finished I had another $110 in unexpected expenses within just three days. These things are impossible to plan for. I certainly didn't anticipate leg/ankle edema resulting in this whole escapade.
When I go for chemo (have had one cycle already with one more to go), it requires four visits to the oncologists office. One to take blood a few days or so before the chemo and yes, it is a $50 co-pay just to walk in the office and have blood drawn. Then there's the day they start the chemo, two days into the treatment when they have to change out the cassette which holds the chemo since the infusion device which you carry around in a fanny pack only holds two days worth, and then of course the day they disconnect you. Five days or so and wham $200. If it was not for my son delaying his mortgage payment to take care of my electric bill for June (due in July) we would have been in the dark. If not for my church paying the July electric bill due this Friday, we'd also have been in the dark. But they cannot continue to do this each month either and next month will be (pardon the pun) a crap shoot.
It is difficult enough handling a diagnosis of invasive cancer and then coping with the side effects of chemo and radiation therapy when you have a significant support system, it is nothing short of overwhelming when you don't.
The most common side effect that most people not having had cancer equate with chemotherapy is vomiting. Actually that is much less of a side effect than it used to be. Now even before beginning to administer the chemo they give you an intravenous injection of an anti-nausea medication and, with the wonderful anti-nausea medications on the market such as Zofran I certainly would not put this high on the negative side effects list. Stomatitis which is the development of sores inside the mouth (and which actually occur within the entire digestive tract down to the anus) would have topped my list until last weekend. The mouth sores are so excruciatingly painful that I could open my mouth no more than an inch. Not only were they inside my cheeks but behind my lips in front of my teeth. This made eating anything nearly impossible and my oncologist warned me that he WOULD put my in the hospital if I wasn't at least drinking to stay hydrated. I promptly promised that I would.
Last weekend, I had glanced down at my feet and noticed they were extremely swollen with 3+ pitting edema. This is when you press on the area with your finger and it stays indented with the finger mark. Not good as this indicates the retention of fluid and with chemo, possible blood clots. So off I had to go to the Emergency Room as per my oncologist's orders to rule out any clots. Thankfully no clots were found however the question then became what is causing the edema. I have no prior history of any high blood pressure, kidney problems or heart problems and so the concern was heart damage from the chemotherapy, potentially congestive heart failure.
I had an echocardiogram done today which confirmed that my heart was fine and since the swelling was being controlled with diuretics they will continue to "watch me" to make sure things don't get worse, especially since I have my next course of chemo starting on the 17th. Of course the chemo wipes out your red and white blood cells as well as your platelets. This greatly increases the chances of infection from even the smallest thing since your immune system is basically shot. It also causes anemia which presents with being tired all the time. Exhausted is more like it.
As for the radiation, for my type of cancer (anal) this can cause burns from the front to the back. These burns can be very severe and the pain is intolerable. Your body starts to involuntarily shake because the pain becomes so severe, and pain medications do not totally take that pain away. Going to the bathroom is a nightmare. The urethra can get burned as well and urine passing through it burns like battery acid. Having the urine touch the skin is just as bad, and having a bowel movement, if it's not diarrhea caused by the chemo can feel like you are going to be split in two. The anal fissures which are like papercuts around the anus are very very painful as well and often will bleed.
One would think that you could use Desitin or some other type of cream or ointment, but you cannot have these creams and lotions on the skin during radiation so they must be wiped off. Not sure which is worse, doing without them or having to wipe them off twice a day. Yes, my radiation treatments are twice a day, not once as most people undergo. This is because as my radiation oncologist says "No one goes through Nigro twice!" The Nigro protocol takes its name from the gentleman who developed this protocol for anal cancer and has been in use for over two decades. It involves approximatley 5,400 rads of radiation and chemotherapy with 5-FU and mitomycin. The chemo sensitizes the cells so that the radiation has a high affinity for the cancer cells, unfortunately it also has a higher affinity for other fast growing cells as well such as the lining of your colon, rectum and anus.
The last time I went through this, treatment had to be stopped after 3,000 rads because the pain was simply unbearable. This is a good thing in the sense that not having received the maximum dose then is what has allowed me to receive radiation now. But radiation thins the skin and my skin in that area is already thinned not only from prior radiation but also from the many laser surgeries I have had to treat AIN. The main symptom aside from the radiation burn is the fatigue. When I come home after my morning treatment all I want to do is sleep until I have to go for my afternoon treatment. This however isn't possible because of the other "side effect" - exhorbitant bills!
Instead of sleeping, I'm either on the phone, or having to physically go to the various assistance agencies just to keep the lights on. Oh yes there are numerous agencies and foundations which assist patients with cancer but guess what - not for anal cancer! Your read correctly. They'll help with anything from your medicine co-pays to utility and rent bills but not if your diagnosis is anal cancer. Colorectal sure, which makes no sense to me at all. These foundations which exclude anal cancer include CancerCare, the Patient Advocate Foundation, and the HelpWell Foundation just to name the most notable.
The social workers are supposed to help with this, but frankly, all they do is hand you lists of phone numbers for places to call. Most of the time when you call these numbers, they simply give you more numbers. It is totally exasperating! This is a double whammy for me. In most cases it is the patient who must call because of medical privacy issues. A patient's family member can call, but my daughter is only 17 and is having a hard enough time coping with what she sees me going through each day. She doesn't know what to ask or how to ask, and she certainly is not allowed to substitute for me for those agencies which require the patient's (or the patient's spouse) physical presence. I have no spouse or significant other to do this either and so, I repeat my story (which doesn't help at all emotionally) over and over again to be rejected over and over again.
Because this situation began last July when I found this anal lesion (then in situ), and because I had three surgeries last fall alone (in addition to numerous procedures) the agencies which will help me did so last year and will not help more than once in a 12 month time period. So, until later this year, I'm currently out of luck. Some people might wonder about my book. While the manuscript is currently finished and with the publisher, it's on a bit of a hold right now. This is a self-published book and so I have received no advance royalties or payments which could assist during this current financial crisis. The current state of the economy doesn't help either since there are so many more people than usual applying for assistance with things such as utility bills. My trip to the hospital takes an hour round trip, and the cost for transportation also becomes a major issue especially when I'm having to go twice a day. I doubt anyone knows how difficult it is just to obtain a gas card to help with the travel expense. The receptionist at the radiation facility overheard me talking with the social worker and actually had me follow her to the gas station where she put $20 in our tank.
I am unable to work and am receiving disability. As most know, even without having claimed it (or unemployment) the benefits don't come close to what you earned at your job. It also doesn't help when you have an ex-husband who is self-employed, hasn't had work and therefore cannot pay the child support on a consistent basis. The emotional duress of not knowing these past several months just how much if any of my child support I would be receiving and when has left me hoarding what monies I do have. This has meant compromising the one place possible - the food bill, for fear I'll need another prescription and not have the money. I can't tell you how many nights I've cried myself to sleep, and this isn't helping my immune system!
The co-pay for the oncologist is $50 a visit, so I needed to see him after being in the ER. In addition, I was given new prescriptions, a diuretic to address the edema and potassium resulting from decreased electrolytes from the diuretics. He also had to give me two new pain medication prescriptions so by the time I got finished I had another $110 in unexpected expenses within just three days. These things are impossible to plan for. I certainly didn't anticipate leg/ankle edema resulting in this whole escapade.
When I go for chemo (have had one cycle already with one more to go), it requires four visits to the oncologists office. One to take blood a few days or so before the chemo and yes, it is a $50 co-pay just to walk in the office and have blood drawn. Then there's the day they start the chemo, two days into the treatment when they have to change out the cassette which holds the chemo since the infusion device which you carry around in a fanny pack only holds two days worth, and then of course the day they disconnect you. Five days or so and wham $200. If it was not for my son delaying his mortgage payment to take care of my electric bill for June (due in July) we would have been in the dark. If not for my church paying the July electric bill due this Friday, we'd also have been in the dark. But they cannot continue to do this each month either and next month will be (pardon the pun) a crap shoot.
It is difficult enough handling a diagnosis of invasive cancer and then coping with the side effects of chemo and radiation therapy when you have a significant support system, it is nothing short of overwhelming when you don't.
Friday, July 31, 2009
Overcoming the Perpetuation of Inaccurate Information
One would think that all it would take to overcome the perpetuation of wrong information would be to provide accurate information. Apparently it's not that simple.
For some time now I have contributed to a variety of HPV healthboards answering questions about HPV for the fearful, the newly diagnosed, those in shock, the occasional friend or family member and all to frequently those with what I call the leapfrog mentality. The people who obtain a piece of inaccurate information and then leapfrog that information from post to post to post. The result? The repeated dissemination of inaccurate information which is detrimental to everyone involved.
Even when corrected, they persist in spreading false information apparently oblivious to the potential damage. In some cases it is not false information as much as a false belief. An example of this is perpetuating the falsehood that HPV related cancers are "rare". This brings along with it another belief, that because it is "rare" it is something that one need not be worried or even concerned about. As a result, women fail to get the recommended screenings or overlook symptoms until in some cases it is too late while remaining blissfully ignorant to the fact that HPV is being connected with cancers affecting more bodily parts and organs at an alarming pace.
Even doctors fail to recognize the very real threat from this virus. Just as the connection between HPV and cervical cancer was dismissed over 25 years ago, the connection between HPV and other cancers such as anal are still minimized and/or dismissed completely by many doctors today.
I am now going through treatment for a second time for invasive anal cancer. No one goes through the Nigro protocol (named after the man who developed this treatment for anal cancer over two decades ago) twice, but I am. The reason no one goes through it twice is because typically this protocol involves chemotherapy in combination with radiation. The dosage of radiation is usually 5,000 to 6,000 cGy (centigray = absorbed dose of radiation). On my last journey into hell with this treatment the pain was so unbearable I was forced to stop treatment after only 3,000 cGy. Now, 18 years later and only because the treatment had be halted early am I able to undergo this protocol again otherwise, it would have been an immediate colostomy.
I have made many friends along the way who are going through or have gone through treatment for anal cancer. By the way, 90 to 99% of anal cancers are HPV related. I have also heard more horror stories than I care to recount regarding the diagnosis of anal cancer in these individuals. Far too many of them were dismissed by their doctors as having "bleeding hemorrhoids". For many who received second opinions and their disease was caught early, they have survived. For others, by the time they received a second opinion it was to late, and for still others they weren't diagnosed until severe bleeding from the anus brought them to the emergency room.
Far too many colorectal surgeons are unaware of the HPV connection. Far too many choose the "most common" explanation for rectal bleeding and leave the diagnosis at that, a bleeding hemorrhoid. Even when presented with an HPV related anal cancer, some colorectal surgeons provide one of two options: wait for it to become invasive or, get a colostomy. What happened to something in the middle? There is a surgical procedure referred to as a wide local excision. This involves surgically removing the affected area along with a wide margin around it in hopes that the cancer is contained within those margins. In my case, by the time I got to a surgeon who could and would perform this surgery, my in situ (localized not yet invasive) cancer had become invasive. I actually had three surgeons all of whom told me that upon visual inspection of the area "everything looks normal". It was only because I insisted that this be biopsied that the diagnosis of squamous cell CIS (carcinoma in situ) was made.
The fourth surgeon who finally performed the wide local excision knew the minute he examined me that something was wrong. He even informed me that he believed it had become invasive. He was right. I asked why it was so easy for him to see what three other surgeons did not. His answer - a trained eye. So what does this say for the other three surgeons I had seen. Well, the main thing it tells me, is that they need more training! Beyond that, it tells me that they and most other physicians need more education regarding HPV.
Farrah Fawcett brough anal cancer to the world's attention back in May when Farrah's Story aired on television to an audience of over nine million viewers. While nothing was mentioned about HPV at least anal cancer came out of the shadows. My goal, is to make sure it never disappears back into those shadows ever again. Anal cancer is on the rise, and has been for some years now. I have to wonder how many people are undiagnosed or shall I say misdiagnosed with bleeding hemorrhoids and so are not included in the statistics.
Here's another statistic. If a woman has CIN (cervical intraepithelial neoplasia also caused by HPV and resultant cervical cancer if left untreated), she has a 37% increased risk of developing AIN (anal intraepithelial neoplasia) and anal cancer.
The increasing knowledge of HPV by doctors is painfully slow and anal cancer is not as rare as people may think. One thing is painfully true however; if you are the one diagnosed with anal cancer then "rare" becomes irrelevant when you're on the wrong side of the statistics regardless of the numbers!
For some time now I have contributed to a variety of HPV healthboards answering questions about HPV for the fearful, the newly diagnosed, those in shock, the occasional friend or family member and all to frequently those with what I call the leapfrog mentality. The people who obtain a piece of inaccurate information and then leapfrog that information from post to post to post. The result? The repeated dissemination of inaccurate information which is detrimental to everyone involved.
Even when corrected, they persist in spreading false information apparently oblivious to the potential damage. In some cases it is not false information as much as a false belief. An example of this is perpetuating the falsehood that HPV related cancers are "rare". This brings along with it another belief, that because it is "rare" it is something that one need not be worried or even concerned about. As a result, women fail to get the recommended screenings or overlook symptoms until in some cases it is too late while remaining blissfully ignorant to the fact that HPV is being connected with cancers affecting more bodily parts and organs at an alarming pace.
Even doctors fail to recognize the very real threat from this virus. Just as the connection between HPV and cervical cancer was dismissed over 25 years ago, the connection between HPV and other cancers such as anal are still minimized and/or dismissed completely by many doctors today.
I am now going through treatment for a second time for invasive anal cancer. No one goes through the Nigro protocol (named after the man who developed this treatment for anal cancer over two decades ago) twice, but I am. The reason no one goes through it twice is because typically this protocol involves chemotherapy in combination with radiation. The dosage of radiation is usually 5,000 to 6,000 cGy (centigray = absorbed dose of radiation). On my last journey into hell with this treatment the pain was so unbearable I was forced to stop treatment after only 3,000 cGy. Now, 18 years later and only because the treatment had be halted early am I able to undergo this protocol again otherwise, it would have been an immediate colostomy.
I have made many friends along the way who are going through or have gone through treatment for anal cancer. By the way, 90 to 99% of anal cancers are HPV related. I have also heard more horror stories than I care to recount regarding the diagnosis of anal cancer in these individuals. Far too many of them were dismissed by their doctors as having "bleeding hemorrhoids". For many who received second opinions and their disease was caught early, they have survived. For others, by the time they received a second opinion it was to late, and for still others they weren't diagnosed until severe bleeding from the anus brought them to the emergency room.
Far too many colorectal surgeons are unaware of the HPV connection. Far too many choose the "most common" explanation for rectal bleeding and leave the diagnosis at that, a bleeding hemorrhoid. Even when presented with an HPV related anal cancer, some colorectal surgeons provide one of two options: wait for it to become invasive or, get a colostomy. What happened to something in the middle? There is a surgical procedure referred to as a wide local excision. This involves surgically removing the affected area along with a wide margin around it in hopes that the cancer is contained within those margins. In my case, by the time I got to a surgeon who could and would perform this surgery, my in situ (localized not yet invasive) cancer had become invasive. I actually had three surgeons all of whom told me that upon visual inspection of the area "everything looks normal". It was only because I insisted that this be biopsied that the diagnosis of squamous cell CIS (carcinoma in situ) was made.
The fourth surgeon who finally performed the wide local excision knew the minute he examined me that something was wrong. He even informed me that he believed it had become invasive. He was right. I asked why it was so easy for him to see what three other surgeons did not. His answer - a trained eye. So what does this say for the other three surgeons I had seen. Well, the main thing it tells me, is that they need more training! Beyond that, it tells me that they and most other physicians need more education regarding HPV.
Farrah Fawcett brough anal cancer to the world's attention back in May when Farrah's Story aired on television to an audience of over nine million viewers. While nothing was mentioned about HPV at least anal cancer came out of the shadows. My goal, is to make sure it never disappears back into those shadows ever again. Anal cancer is on the rise, and has been for some years now. I have to wonder how many people are undiagnosed or shall I say misdiagnosed with bleeding hemorrhoids and so are not included in the statistics.
Here's another statistic. If a woman has CIN (cervical intraepithelial neoplasia also caused by HPV and resultant cervical cancer if left untreated), she has a 37% increased risk of developing AIN (anal intraepithelial neoplasia) and anal cancer.
The increasing knowledge of HPV by doctors is painfully slow and anal cancer is not as rare as people may think. One thing is painfully true however; if you are the one diagnosed with anal cancer then "rare" becomes irrelevant when you're on the wrong side of the statistics regardless of the numbers!
Wednesday, July 15, 2009
The Science of Medicine - The Facts of Medical Coding
There are numerous systems developed within the medical community in order to maintain continuity and consistent understanding amongst physicians and other healthcare providers. This includes insurance companies.
Two of these systems are the CPT (Common Procedure Termology) coding and ICD-9 (diagnosic/diagnosis) coding. The CPT coding involves your office visits, procedures whether in the doctors office or in the hospital including surgical and any other type of visit/procedure you may have. Diagnosis coding pertains to your specific diagnosis. While there are some ICD-9 codes which are labeled pertaining to a specific body part, there are "nonspecific" codes which can be used. Frankly, this only adds to confusion and sometimes insurance denials so it is important that physicians or more specifically their billing department codes correctly.
Coding errors as they are routinely called occur more often than they should. When my daughter was a toddler, she had to have tubes placed in her ears because of recurrent ear infections. This was done for both ears. When I received the EOB (Explanation of Benefits) from the insurance company they had only paid about $650 of a $1500 bill. Because of my many years in Practice Administration and overseeing billing and coding, I quickly recognized that the surgeons office had incorrectly coded the procedure. While they did have the correct code for that procedure, what they failed to add was the "52" modifier to the end of the code indicating that this was a bilateral procedure. I contacted the surgeons office, had the claim resubmitted with the correct code, and the insurance paid another $650. Had I not picked up on this coding error, I would have been responsible to the physician for the remaining balance of $850 instead of $200. Many people don't question these things by calling their insurance comany and often just pay the balances they are billed.
Sometimes, more significant situations can occur with errors in diagnosis coding. Individuals can be declined for life insurance policies because a prior doctor's visit was coded as having congestive heart failure instead of congested sinuses. This is a stretch between these two diagnoses, but I think you understand my point. Cancer policies are common now. Years ago there were no such policies. These can be financially life-saving if an individual has the unfortunate experience of being diagnosed with cancer after having purchased one of these policies.
However some patients with carcinoma in situ which is the same as a Stage 0 cancer are being denied their benefits under these cancer policies. This comes from a confusion between the diagnosis of "IN3" intraeptithelial neoplasia Grade 3 and carcinoma in situ or CIS. Intraepithelial neplasia can be used when relating to the cervix (CIN), vagina (VaIN), vulva (VIN) or anus (AIN). There is no difference between a diagnosis of for example a CIN3 and a carcioma in situ. As I mentioned above regarding coding. Individuals who are being denied their benefits under these policies need to get with their physicians and get this corrected. Your physician needs to correct and send follow-up to your insurance company (health insurance) and cancer insurance company and utilize the correct code, which in the case of the cervix, is 233.1.
There is no reason, why coding errors should be the cause of individuals being denied benefits they so deserve, especially, in my opinion, when dealing with cancer!
If you check the ICD-9 codes there is one code which covers CIS/CIN3 and that code is 233.1
Two of these systems are the CPT (Common Procedure Termology) coding and ICD-9 (diagnosic/diagnosis) coding. The CPT coding involves your office visits, procedures whether in the doctors office or in the hospital including surgical and any other type of visit/procedure you may have. Diagnosis coding pertains to your specific diagnosis. While there are some ICD-9 codes which are labeled pertaining to a specific body part, there are "nonspecific" codes which can be used. Frankly, this only adds to confusion and sometimes insurance denials so it is important that physicians or more specifically their billing department codes correctly.
Coding errors as they are routinely called occur more often than they should. When my daughter was a toddler, she had to have tubes placed in her ears because of recurrent ear infections. This was done for both ears. When I received the EOB (Explanation of Benefits) from the insurance company they had only paid about $650 of a $1500 bill. Because of my many years in Practice Administration and overseeing billing and coding, I quickly recognized that the surgeons office had incorrectly coded the procedure. While they did have the correct code for that procedure, what they failed to add was the "52" modifier to the end of the code indicating that this was a bilateral procedure. I contacted the surgeons office, had the claim resubmitted with the correct code, and the insurance paid another $650. Had I not picked up on this coding error, I would have been responsible to the physician for the remaining balance of $850 instead of $200. Many people don't question these things by calling their insurance comany and often just pay the balances they are billed.
Sometimes, more significant situations can occur with errors in diagnosis coding. Individuals can be declined for life insurance policies because a prior doctor's visit was coded as having congestive heart failure instead of congested sinuses. This is a stretch between these two diagnoses, but I think you understand my point. Cancer policies are common now. Years ago there were no such policies. These can be financially life-saving if an individual has the unfortunate experience of being diagnosed with cancer after having purchased one of these policies.
However some patients with carcinoma in situ which is the same as a Stage 0 cancer are being denied their benefits under these cancer policies. This comes from a confusion between the diagnosis of "IN3" intraeptithelial neoplasia Grade 3 and carcinoma in situ or CIS. Intraepithelial neplasia can be used when relating to the cervix (CIN), vagina (VaIN), vulva (VIN) or anus (AIN). There is no difference between a diagnosis of for example a CIN3 and a carcioma in situ. As I mentioned above regarding coding. Individuals who are being denied their benefits under these policies need to get with their physicians and get this corrected. Your physician needs to correct and send follow-up to your insurance company (health insurance) and cancer insurance company and utilize the correct code, which in the case of the cervix, is 233.1.
There is no reason, why coding errors should be the cause of individuals being denied benefits they so deserve, especially, in my opinion, when dealing with cancer!
If you check the ICD-9 codes there is one code which covers CIS/CIN3 and that code is 233.1
Thursday, July 9, 2009
Some People Just Can't Deal With Being Wrong!
It's unfortunate, but I suppose a fact of life, that there are those who simply cannot accept being corrected, even when it is presented in a non-threatening and essentially kind way. You know the ones. They become defensive, attacking and sometimes downright mean. Perhaps this has to do with needing to been the "queen bee", jealousy or envy, its anybodys guess.
Opinions are opinions and facts are facts. When facts are misrepresented, especially regarding the topic of HPV that upsets me. There are far to many sites with erroneous information and far too many people who have just been recently diagnosed with HPV themselves and suddenly they're experts because they've spent a few weeks searching the internet. These people can be dangerous because they present information as fact when often it is far from it.
I'm not talking about the folks who are compassionate and truly caring and want to help others through providing information which they themselves experienced via a procedure etc. And there are those, who provide legitimate researched accurate information. These are the ones who should be applauded for taking time out of their day to answer posts and sooth the soul of another human being!
I have spent months and years rearching HPV not only for my own knowledge but in researching my book. I have spoken to MD's, PhD's, DO's, pharmacists, pathologists and cytopathologists to name a few. I didn't just pull my knowledge off a few web pages. I have a 22 year history with this virus myself and am quite familiar with its ramifications. Even those who have dealt with HPV themselves and have quite a significant knowledge base still don't know everything. There are some areas in which, despite the significant research I've done I am still lacking but at least I can admit that. I'm still learning about viral loads relating to HPV and several other topics such as foamite transmission.
A situation came up recently on a healthboard. I attempted (privately) to let someone know that her current understanding of a particular situation was in fact incorrect. The only word I can think of at the moment to describe her is - COWARD. Could she maturely respond to me - no. Instead she had to go running like a little ninny whining to complain. She didn't have the guts, or the knowledge quite frankly to address the issue head on. She was going to believe what she was going to believe and that was that! Fine, but don't go spewing this incorrect information to dozens of other people! It is irresponsible individuals like this that only contribute to the misperceptions, confusion and dissemination of inaccurate information which only makes the situation worse. The topic of HPV is confusing enough, believe me.
I'm actually quite surprised because this particular lady is quite well versed regarding HPV. Apparently however, she doesn't like to be challenged. Well that's just too bad! Higher level of knowledge or not she should at least be able to admit that perhaps, just perhaps she got it wrong.
I have received a tremendous amount of (sincere) support from individuals on this particular site and they know who they are. They will never truly understand the strength that their support has given me and how much I appreciate each and every one of them. They also understand however, that I am currently dealing with my own physical and emotional hell of recurrent invasive anal cancer and upcoming radiation and chemotherapy. As such, I am emotionally very fragile at this particular point in time and have no trouble admitting that - who wouldn't be under the circumstances. However, I find it reprehensible, not to mention downright mean for this individual (and one other) to do what they have done. It speaks not to compassion but to defensiveness, not to concern but to a lack of it, and not to the most important thing of imparting accurate medical information, but to continuing to disseminate what SHE believes to be accurate and is not.
While contributing to this site has allowed me to impart my knowledge and understanding of HPV to others (which is my main goal) and while I would love to continue to do so, I cannot do so under the circumstances which have been created at this time which is truly a shame and in my opinion, a loss for everyone including myself.
These types of individuals are an impediment to progress because they prefer to remain stuck in the past. Stuck in old definitions, stuck in old research conclusions, stuck in old information, and stuck is the last thing anyone needs to be if they are going to be open-minded - they're mutually exclusive. Understanding of HPV evolves daily and one needs to be open-minded to deal with it. These folks need to do us all a favor and climb out of the sandbox! Stop behaving like a pre-schooler who just picked up their jacks and is going home. On the other hand, maybe they should go home, and stay there!
Opinions are opinions and facts are facts. When facts are misrepresented, especially regarding the topic of HPV that upsets me. There are far to many sites with erroneous information and far too many people who have just been recently diagnosed with HPV themselves and suddenly they're experts because they've spent a few weeks searching the internet. These people can be dangerous because they present information as fact when often it is far from it.
I'm not talking about the folks who are compassionate and truly caring and want to help others through providing information which they themselves experienced via a procedure etc. And there are those, who provide legitimate researched accurate information. These are the ones who should be applauded for taking time out of their day to answer posts and sooth the soul of another human being!
I have spent months and years rearching HPV not only for my own knowledge but in researching my book. I have spoken to MD's, PhD's, DO's, pharmacists, pathologists and cytopathologists to name a few. I didn't just pull my knowledge off a few web pages. I have a 22 year history with this virus myself and am quite familiar with its ramifications. Even those who have dealt with HPV themselves and have quite a significant knowledge base still don't know everything. There are some areas in which, despite the significant research I've done I am still lacking but at least I can admit that. I'm still learning about viral loads relating to HPV and several other topics such as foamite transmission.
A situation came up recently on a healthboard. I attempted (privately) to let someone know that her current understanding of a particular situation was in fact incorrect. The only word I can think of at the moment to describe her is - COWARD. Could she maturely respond to me - no. Instead she had to go running like a little ninny whining to complain. She didn't have the guts, or the knowledge quite frankly to address the issue head on. She was going to believe what she was going to believe and that was that! Fine, but don't go spewing this incorrect information to dozens of other people! It is irresponsible individuals like this that only contribute to the misperceptions, confusion and dissemination of inaccurate information which only makes the situation worse. The topic of HPV is confusing enough, believe me.
I'm actually quite surprised because this particular lady is quite well versed regarding HPV. Apparently however, she doesn't like to be challenged. Well that's just too bad! Higher level of knowledge or not she should at least be able to admit that perhaps, just perhaps she got it wrong.
I have received a tremendous amount of (sincere) support from individuals on this particular site and they know who they are. They will never truly understand the strength that their support has given me and how much I appreciate each and every one of them. They also understand however, that I am currently dealing with my own physical and emotional hell of recurrent invasive anal cancer and upcoming radiation and chemotherapy. As such, I am emotionally very fragile at this particular point in time and have no trouble admitting that - who wouldn't be under the circumstances. However, I find it reprehensible, not to mention downright mean for this individual (and one other) to do what they have done. It speaks not to compassion but to defensiveness, not to concern but to a lack of it, and not to the most important thing of imparting accurate medical information, but to continuing to disseminate what SHE believes to be accurate and is not.
While contributing to this site has allowed me to impart my knowledge and understanding of HPV to others (which is my main goal) and while I would love to continue to do so, I cannot do so under the circumstances which have been created at this time which is truly a shame and in my opinion, a loss for everyone including myself.
These types of individuals are an impediment to progress because they prefer to remain stuck in the past. Stuck in old definitions, stuck in old research conclusions, stuck in old information, and stuck is the last thing anyone needs to be if they are going to be open-minded - they're mutually exclusive. Understanding of HPV evolves daily and one needs to be open-minded to deal with it. These folks need to do us all a favor and climb out of the sandbox! Stop behaving like a pre-schooler who just picked up their jacks and is going home. On the other hand, maybe they should go home, and stay there!
Thursday, June 25, 2009
The Passing of an "Angel"
It is with much sadness that I embraced the news of Farrah Fawcett's death. Her recent documentary "Farrah's Story" was difficult for me to watch having dealt with anal cancer in 1991. I wasn't right for three days afterwards having flashbacks of my own treatment. Now, only a short month later, I am dealing yet again with an invasive anal cancer and must face the pain I know is inevitable with more radiation and chemotherapy.
In listening to the news broadcasts of her death, rarely did they mention that her battle was with anal cancer, only cancer. More than likely this is the result of our squeemishness about discussing a body part we all have in common, the anus. Our ingrained teachings of this area being "dirty" only foster our avoidance of a body part we rely on every day.
Farrah's Story failed to mention any connection to HPV (the human papilloma virus) which is responsible for 90% of anal cancers. I found the documentary confusing in the sense that I felt dropped in the middle of the story. We start off with her already at a Stage 4 cancer with metastasis to her liver. There was no mention of how they came to find this cancer. What symptoms did she have? Was she aware that this was caused by HPV? Did she have any prior history of HPV? Research has shown a high correlation between women who have had cervical dysplasia or cervical cancer as also having anal dysplasia and anal cancer. With nine million people watching this documentary an opportunity was sorely missed to inform so many of this potentially killer virus and that there is a vaccine available to prevent the most common high risk strains, those most often responsible for these cancers.
Then again, because HPV is sexually transmitted it often brings with it shame and embarassment for the patient and scorn and ridicule from others, the misinformed as well as the misguided and judgmental. But HPV has also been shown to cause 25% of head and neck cancers and 25% of lung cancers so regardless of its mode of transmission, the virus does not descriminate when causing cancer within the body.
My prayers are with her friends and family while they wrestle with the void left by her passing.
I look ahead to living through what everyone else just watched in her documentary (minus the trips to Germany of course). I sincerely hope that in the sequal, they will focus on the forest and not just the tree. That they will provide more information to increase awareness of HPV, screening tests, symptoms (many times of which unfortunately there are none until it is too late) and the vaccine which can prevent it.
The time has come to bring HPV and anal cancer out of the shadows!
In listening to the news broadcasts of her death, rarely did they mention that her battle was with anal cancer, only cancer. More than likely this is the result of our squeemishness about discussing a body part we all have in common, the anus. Our ingrained teachings of this area being "dirty" only foster our avoidance of a body part we rely on every day.
Farrah's Story failed to mention any connection to HPV (the human papilloma virus) which is responsible for 90% of anal cancers. I found the documentary confusing in the sense that I felt dropped in the middle of the story. We start off with her already at a Stage 4 cancer with metastasis to her liver. There was no mention of how they came to find this cancer. What symptoms did she have? Was she aware that this was caused by HPV? Did she have any prior history of HPV? Research has shown a high correlation between women who have had cervical dysplasia or cervical cancer as also having anal dysplasia and anal cancer. With nine million people watching this documentary an opportunity was sorely missed to inform so many of this potentially killer virus and that there is a vaccine available to prevent the most common high risk strains, those most often responsible for these cancers.
Then again, because HPV is sexually transmitted it often brings with it shame and embarassment for the patient and scorn and ridicule from others, the misinformed as well as the misguided and judgmental. But HPV has also been shown to cause 25% of head and neck cancers and 25% of lung cancers so regardless of its mode of transmission, the virus does not descriminate when causing cancer within the body.
My prayers are with her friends and family while they wrestle with the void left by her passing.
I look ahead to living through what everyone else just watched in her documentary (minus the trips to Germany of course). I sincerely hope that in the sequal, they will focus on the forest and not just the tree. That they will provide more information to increase awareness of HPV, screening tests, symptoms (many times of which unfortunately there are none until it is too late) and the vaccine which can prevent it.
The time has come to bring HPV and anal cancer out of the shadows!
Tuesday, June 23, 2009
It's NOT all about cervical cancer!
My heart goes out to anyone with cancer. I've been there. I'm there again now. However, when it comes to HPV frankly I'm tired of hearing about HPV and cervical cancer when HPV has been shown to cause so many other cancers as well and these seem to be overlooked in many instances.
I was recently told that my "survivor" story really would not be applicable for inclusion on a particular site because my survival dealt more with HPV induced anal caner (although i have had carcinoma in situ involving the cervix, vagina and vulva as well). I find this appauling. We should all be in the same boat, moving in the same direction, one of awareness and not just that HPV can cause cervical cancer but all the other cancers as well!
So I'm a survivor, I'm just not a survivor of cervical cancer! What is wrong with these people? What is wrong with the FDA limiting the use of the HPV test to only cervical specimens? Aren't they testing for the virus? So if that virus also causes these other cancers, shouldn't they be allowed to use the test for screening of those cancers as well? Why, when the FDA updated the Gardasil literature last year to include vaginal and vulvar carcinoma in terms of prevention with the vaccine didn't they include anal cancer? It's the virus that can cause the potential cancer isn't it? Yes! So why limit it's use to only the detection of cervical cancer?
I applaude those with the courage and fortitude to endure the tortuous treatments involved with having cancer regardless of which type of cancer you have. I just don't like being treated like a "second class citizen" because I have a cancer (while still caused by HPV) that isn't being recognized.
I was recently told that my "survivor" story really would not be applicable for inclusion on a particular site because my survival dealt more with HPV induced anal caner (although i have had carcinoma in situ involving the cervix, vagina and vulva as well). I find this appauling. We should all be in the same boat, moving in the same direction, one of awareness and not just that HPV can cause cervical cancer but all the other cancers as well!
So I'm a survivor, I'm just not a survivor of cervical cancer! What is wrong with these people? What is wrong with the FDA limiting the use of the HPV test to only cervical specimens? Aren't they testing for the virus? So if that virus also causes these other cancers, shouldn't they be allowed to use the test for screening of those cancers as well? Why, when the FDA updated the Gardasil literature last year to include vaginal and vulvar carcinoma in terms of prevention with the vaccine didn't they include anal cancer? It's the virus that can cause the potential cancer isn't it? Yes! So why limit it's use to only the detection of cervical cancer?
I applaude those with the courage and fortitude to endure the tortuous treatments involved with having cancer regardless of which type of cancer you have. I just don't like being treated like a "second class citizen" because I have a cancer (while still caused by HPV) that isn't being recognized.
Monday, June 22, 2009
PET Scan tomorrow............
Tomorrow I begin yet again another journey with the ravages of HPV. Actually, I've been traveling this particular portion of the journey for almost a year. It has consisted of dealing with multiple surgeons who insisted everything looked "normal", not having done biopsies during an earlier surgery and having to undergo yet a second surgery just to do these biopsies and being told words that over the years have become all too familiar "I don't know how to treat you."
Finally I resorted to going out of state to Duke Cancer Center in North Carolina where I underwent surgery for the purpose of removing what had been diagnosed as anal carcinoma in situ (cancer of the anus in place - not invasive or spreading). After being delayed for months by doctors unwillingness to listen to me, the patient, their lack of knowledge in how to treat HPV related cancers and of course let's not forget delays from the insurance company removal of an in situ lesion became instead a pathological diagnosis of invasive anal cancer with positive margins.
My options at this point are radiation therapy and chemo. I've already been down that road before so additional radiation therapy severely compromises being able to maintain sphincter control and possibly having to undergo an APR (abdominoperitoneal resection) with colostomy.
I will be blogging as the days and weeks progress with updates regarding my treatment, my current condition and how I am tolerating treatment. I believe it is important for others to understand the full impact of this virus and how it can change your life - forever!
Remember to check out the website: http://anymothersdaughter.com
Finally I resorted to going out of state to Duke Cancer Center in North Carolina where I underwent surgery for the purpose of removing what had been diagnosed as anal carcinoma in situ (cancer of the anus in place - not invasive or spreading). After being delayed for months by doctors unwillingness to listen to me, the patient, their lack of knowledge in how to treat HPV related cancers and of course let's not forget delays from the insurance company removal of an in situ lesion became instead a pathological diagnosis of invasive anal cancer with positive margins.
My options at this point are radiation therapy and chemo. I've already been down that road before so additional radiation therapy severely compromises being able to maintain sphincter control and possibly having to undergo an APR (abdominoperitoneal resection) with colostomy.
I will be blogging as the days and weeks progress with updates regarding my treatment, my current condition and how I am tolerating treatment. I believe it is important for others to understand the full impact of this virus and how it can change your life - forever!
Remember to check out the website: http://anymothersdaughter.com
Thursday, June 18, 2009
If it walks like a duck...............
Being in the Western medical field for many years I have obviously been trained in this form of medicine. However, I do believe that Eastern medicine can have advantages. Eastern medicine has been using herbs and plants for centuries many of which Western pharmaceutical companies utlize to make common medications used here in the United States.
Most certainly eating a healthy diet, taking vitamins and mineral supplements and other positive healthy lifestyle changes can help boost your immune system which plays a large if not the largest part in the bodies ability to keep the virus in a dormant (asymptomatic) state.
However, when it come to more advanced conditions of dysplasia whether it be CIN2/3 (cervical intraepithelial neoplaisa), VIN2/3 (vulvar intraepithelial neoplasia) or AIN2/3 (anal intraepithelial neplasia), the majority of which are caused by the human papilloma virus the fact is, you cannot CURE a virus! You can only remove the symptoms which the virus produces, i.e. dysplasia, cancer.
Many may utilize these methods and find their condition has regressed. Naturally they would attribute this to the use of these methods. But there is a percentage of these lesions which will regress on their own and there is no research to prove that these methods are what actually regressed the condition.
Obviously this is an individual choice, but far too many people have also been duped with claims of these types of "cures" for cancer or precancerous lesions having received the name "quack cures" The progression of HPV dysplasia to cancer is not as cut and dried as some may wish to believe. Statistically it can take years but there are those who have gone on to develop invasive cancers within months of their initial diagnosis.
I'm all for people trying various alternative types of medicine (which may also work purely as a placebo effect) but get extremely upset when people claim to have "cured themselves" when their HPV lesions/condition may have regressed on its own anyway. To then push these methods on others to the exclusion of Western medical treatments I believe to be irresponsible. This is potentially another persons LIFE you are talking about.
The more knowledge a person has, the more informed decisions they can make, but let them make those decisions themselves. After all, they are the ones having to live with the consequences.
Most certainly eating a healthy diet, taking vitamins and mineral supplements and other positive healthy lifestyle changes can help boost your immune system which plays a large if not the largest part in the bodies ability to keep the virus in a dormant (asymptomatic) state.
However, when it come to more advanced conditions of dysplasia whether it be CIN2/3 (cervical intraepithelial neoplaisa), VIN2/3 (vulvar intraepithelial neoplasia) or AIN2/3 (anal intraepithelial neplasia), the majority of which are caused by the human papilloma virus the fact is, you cannot CURE a virus! You can only remove the symptoms which the virus produces, i.e. dysplasia, cancer.
Many may utilize these methods and find their condition has regressed. Naturally they would attribute this to the use of these methods. But there is a percentage of these lesions which will regress on their own and there is no research to prove that these methods are what actually regressed the condition.
Obviously this is an individual choice, but far too many people have also been duped with claims of these types of "cures" for cancer or precancerous lesions having received the name "quack cures" The progression of HPV dysplasia to cancer is not as cut and dried as some may wish to believe. Statistically it can take years but there are those who have gone on to develop invasive cancers within months of their initial diagnosis.
I'm all for people trying various alternative types of medicine (which may also work purely as a placebo effect) but get extremely upset when people claim to have "cured themselves" when their HPV lesions/condition may have regressed on its own anyway. To then push these methods on others to the exclusion of Western medical treatments I believe to be irresponsible. This is potentially another persons LIFE you are talking about.
The more knowledge a person has, the more informed decisions they can make, but let them make those decisions themselves. After all, they are the ones having to live with the consequences.
Sunday, June 14, 2009
Welcome!
Welcome to the Any Mother's Daughter Blog! This is an addition to our interactive website (anymothersdaughter.com) and will allow those with concerns about HPV or who have been diagnosed with HPV and who wish to share comments or concerns and receive support from those already dealing with this little recognized virus.
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