It's a tad difficult to get on with life when something such as walking presents a major obstacle.
One of the side effects/complications which can occur from chemotherapy is referred to as CIPN or Chemotherapy induced peripheral neuropathy. This can affect the lower arms and hands or lower legs and feet or both upper and lower extremities.
In my case, it affects my calves and feet. The majority of the time I cannot feel my feet other than the sensation that they are always cold. My calves themselves are painful. It ranges from intense cramp-like pain from the outside to an internal feeling that they are so tight they're going to burst.
The particular chemo which I was given did not have a tendency to cause this issue, but then shortly after starting the chemo I also developed pitting edema in both legs severe enough that an indent remained when pressing my finger against my leg. I also developed more severe side effects than usual according to the oncologist. I always had the 1 in 1,000 symptom or side effect - lucky me.
When simply putting your feet on the floor in the morning is painful it certainly doesn't make for a great start to any day. Medicatilons such as Lyrica or Neurontin which can be helpful with nerve pain were useless. Other pain medications were just as useless.
I find myself using a heating pad which does more to ahift the focus than actually solve the problem. I also sit in bed at night and massage my calves which feels good at the moment but provides no relief upon stopping.
I don't know how long I will suffer from this condition or if it will ever completely go away. In the meantime, this is something that those requiring the administration of chemotherapy to be aware of and bring any such symptoms to your doctors attention.
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.
Thursday, February 4, 2010
Friday, December 4, 2009
Getting On With Your Life.
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)
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)
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!
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