Monday, October 20, 2008
Today has been a hard day.
Last night, just before bed I started to bleed very heavily. I had to get up in the middle of the night to change my clothes and I started hurting. I finally got back to sleep and figured by morning it shouldn't be as bad. I was right, for a little while. Up to now I have had a pretty easy recovery, but today is a bad day. I am in a great deal of pain and the bleeding has started again. I went to work and ended up changing my pad there only 4 hours after putting it on, I can usually wait until I get home. I left work early and by the time I got home, I had to put my pants in the wash. I called my doctor earlier and told them what was going on and the nurse said it was normal for this to happen. I just don't get why it waits 2 weeks?! I would think the bleeding and pain would be immediatly following, but I guess not. I do have my 2 week check up tomorrow, so hopefully I can get through half a day tomorrow at work and the doc will say I am okay and my margins came back clear and this bleeding will subside some, along with the pain. I am keeping my fingers crossed and saying my prayers tonight!
Sunday, October 19, 2008
The biopsy
Continuing from where I left off.... My appointment was made and I was preparing myself for what was to come. In the two weeks leading up to my procedure, I feverishly researched not only HPV, but the LEEP procedure and cone biopsies. I then had my doctor fax my biopsy results to me so I could consult a gynecological oncologist as several people have referred me. I called 16 GYN/ONC before I found a nurse that would answer one simple question for me: "Here are my test results, here is what my doc is suggesting. Is this the typical next step or are there other options and should I come to you for those?" And yes, you saw the number right, 16 different offices. At that last office, the nurse reassured me that my doctor was on the right path and there would be no reason for me to go there unless my margins did not come back clear. What I found during my research shocked and amazed me. By the age of 50, 80% of the world's women will have had some type of HPV infection. There are over 100 different strains of HPV, 15 of which are known to cause cervical cancer if not treated, 70% of those cervical cancer cases are caused by only 4 of the 15 strains; they are classified as high risk. The 4 high risk strains are what the vaccine Guradasil helps to protect against. In this vaccine lies one very big problem. Not only are patients being misinformed, but so are doctors, as to who should be receiving the vaccine. Harald zur Hausen is the German man who discovered the link between HPV and cervical cancer. Zur Hausen believes that children as young as 9 should start getting vaccinated, both girls AND boys! The age should also be lifted to above 17, but ONLY IF THERE HAS BEEN NO SEXUAL ACTIVITY. If you already have an HPV infection, the vaccine is pointless. While HPV is not diagnosable in men, it is still believed that it rarely causes genital cancer for men as well.
During all of my research, one thing shouted out to me, this is the #2 cause of cancer in women world wide, yet it seems no one knows about it. I did research on the support ribbon for it. There is no "official" color, though most prevalent is a teal and white combination. The NCCC ( National Cervical Cancer and HPV Coalition) is putting it up for vote and will release the decision in January, which happens to be Cervical Cancer Awareness Month (Are you aware of this? I sure wasn't!) As we all know, October is Breast Cancer Awareness Month, and Breast Cancer "Owns" the color pink. When you see pink, you know what it stands for. So far this month, dozens of monuments WORLD WIDE have been lit in pink to show support, including our own White House on October 7th. Web sites have "gone pink" or displayed large pink ribbons on their page, stores have entire aisles dedicated to pink support products. M&M's "goes pink" for October, there are walks and marathons, concerts and benefits, the list is endless. My goal is to help make cervical cancer just as prevalent as breast cancer.
Our fights are hard, our fights are long, and our fights are ignored by so many in the medical professional field. I have found so many stories of women who were told word for word "You are too young to have cancer." Cervical cancer can be "cured" quicker than any cancer can, if it is caught in time, yet every year 250,000 women die of it. And most of all, cervical cancer has a vaccine! A vaccine that can help prevent around 70% of those deaths, and countless more from ever getting one of the 4 high risk HPV strains. No other cancer can say that. While the vaccine cannot protect form all cervical cancer, and should not be used to replace your yearly PAP, think of how many women could be saved from cervical cancer and pre-cancer.
Since my diagnosis, I have felt a whirl wind of emotion, from shame, fear and anger to resentment and relief. I have made it my duty to educate not only myself, but my family and friends on HPV and cervical cancer. I have found that several of my friends have HPV, and a few of them have been right where I am right now. I have realized that there is NOTHING for me to be ashamed of. There is nothing for any woman diagnosed with HPV to be ashamed of, it is one of the most prevalent STD's out there, and the fact that the medical world is just now sharing this with us appalls me. We are all but just one person, but if we unite and raise our voices, we will be heard, and eventually we will no longer be ignored. I hope that you will raise your voice with me and educate yourself, your friends and family about what is going on, and help me spread the word to those that have not heard us yet. The life you help to save today may help you save your own later. If even just one women reads my story and goes and gets checked because of it, I have accomplished part of what I hope to accomplish, and what I have gone through is worth it.
Getting pregnant saved my life. Because my daughter is here today, I will be here for tomorrow.
During all of my research, one thing shouted out to me, this is the #2 cause of cancer in women world wide, yet it seems no one knows about it. I did research on the support ribbon for it. There is no "official" color, though most prevalent is a teal and white combination. The NCCC ( National Cervical Cancer and HPV Coalition) is putting it up for vote and will release the decision in January, which happens to be Cervical Cancer Awareness Month (Are you aware of this? I sure wasn't!) As we all know, October is Breast Cancer Awareness Month, and Breast Cancer "Owns" the color pink. When you see pink, you know what it stands for. So far this month, dozens of monuments WORLD WIDE have been lit in pink to show support, including our own White House on October 7th. Web sites have "gone pink" or displayed large pink ribbons on their page, stores have entire aisles dedicated to pink support products. M&M's "goes pink" for October, there are walks and marathons, concerts and benefits, the list is endless. My goal is to help make cervical cancer just as prevalent as breast cancer.
Our fights are hard, our fights are long, and our fights are ignored by so many in the medical professional field. I have found so many stories of women who were told word for word "You are too young to have cancer." Cervical cancer can be "cured" quicker than any cancer can, if it is caught in time, yet every year 250,000 women die of it. And most of all, cervical cancer has a vaccine! A vaccine that can help prevent around 70% of those deaths, and countless more from ever getting one of the 4 high risk HPV strains. No other cancer can say that. While the vaccine cannot protect form all cervical cancer, and should not be used to replace your yearly PAP, think of how many women could be saved from cervical cancer and pre-cancer.
Since my diagnosis, I have felt a whirl wind of emotion, from shame, fear and anger to resentment and relief. I have made it my duty to educate not only myself, but my family and friends on HPV and cervical cancer. I have found that several of my friends have HPV, and a few of them have been right where I am right now. I have realized that there is NOTHING for me to be ashamed of. There is nothing for any woman diagnosed with HPV to be ashamed of, it is one of the most prevalent STD's out there, and the fact that the medical world is just now sharing this with us appalls me. We are all but just one person, but if we unite and raise our voices, we will be heard, and eventually we will no longer be ignored. I hope that you will raise your voice with me and educate yourself, your friends and family about what is going on, and help me spread the word to those that have not heard us yet. The life you help to save today may help you save your own later. If even just one women reads my story and goes and gets checked because of it, I have accomplished part of what I hope to accomplish, and what I have gone through is worth it.
Getting pregnant saved my life. Because my daughter is here today, I will be here for tomorrow.
Friday, October 17, 2008
The begining
I guess I should give everyone a bit of my background. I am 26, and I am a single mother. My daughter will be turning two soon and she is my world. She is why I have the strength I have. I was diagnosed with HPV during the rutine STD screening doctors due at the begining of any pregnancy. That was in March of 2006. When I was told what I had, I had no idea what it was or what it meant for my unborn child. I was terrified and ashamed, I felt dirty, tainted. I went home and looked up HPV, and found suprisingly little. But I was able to reassure myself that it would not hurt my daughter.
The happiest moment in my life was the moment I heard her first cry, at that moment, nothing else mattered but her, little did I know that becoming pregnant with her saved my life. During my last post partum check up, my doctor told me I needed a colposcopy, but because my insurance lapsed I had to pay full price, and I could not afford it. About 10 months later, I had a major life changing event and ended up moving back home with my parents. I got a job, and that job came with insurance. I just barely made it in time for the pre-existing condition clause to be void, I'm talking 1 month! That was back in February, a year after I was told I needed that colposcopy I never got. All this time I have spent afraid to go to the doctor because I was afraid of what she would tell me.
I finally mustered up the courage to go back in August, I made my appointment and had my PAP. About a week later I get a call from my doctor's office, they said she wanted me to come in as soon as possible to get a colposcopy so she could do a biopsy. And boy did that scare me! I made the appointment and again feared the day that was looming. After all, if you don't get tested, it isn't real, right? Going in and having them tell you that they want to test you for cancer means there is no turing back, there is no more pretending that it's not there, that your fine. Wrong. That just lets it fester and grow.
I had my biopsy in September and had to wait the normal 2 weeks for the results. But to top things off, we had a hurricane hit right in the middle of all of this! So for all I knew, my "specamines" were ruined or lost and I would have to do this all over again. I called my doctor's office after everything started opening back up to ask if there would be a delay in getting the results, after all, for all I knew they shipped them somewhere else for testing. Luckily, they got them back in the normal 2 weeks, but boy was that the longest two weeks of my life.
When I got "the call" I was at work so I had to run off and find an empty conference room somewhere so that I could talk in private. When I answered, the nurse said that the doctor wanted to talk to me herself. I just knew it was bad news, they never talk to you themselves about test results unless it's something bad, right? When she finally came on, she didn't come right out and say yes it was cancer, or no it's not. She just listed my previous history: diagnosed in March 2006 with HPV, told in February 2007 I needed a colposcopy, had a PAP in August 2008, and had the biopsy done 2 weeks before. She FINALLY said that it was not cancer. I had to ask her 3 times just to make sure I heard her right!
She told me that she wanted me to have something called a cone biopsy using the LEEP procedure, and of course I had no cluse as to what either of those 2 were. She said that it indeed was "cancer free" but it was very advanced mutation and she wanted me to have the tumors removed as soon as possible. I had no clue what any of this meant, but I agreed. 30 minutes later he scheduling nurse called me and wanted me to make my appointment for the next week. Unfortunately I had to wait 2 weeks due to my schedule.
Sorry to end this abruptly, but it is getting late, and my daughter will have me up early. I will try to post more tomorrow night.
The happiest moment in my life was the moment I heard her first cry, at that moment, nothing else mattered but her, little did I know that becoming pregnant with her saved my life. During my last post partum check up, my doctor told me I needed a colposcopy, but because my insurance lapsed I had to pay full price, and I could not afford it. About 10 months later, I had a major life changing event and ended up moving back home with my parents. I got a job, and that job came with insurance. I just barely made it in time for the pre-existing condition clause to be void, I'm talking 1 month! That was back in February, a year after I was told I needed that colposcopy I never got. All this time I have spent afraid to go to the doctor because I was afraid of what she would tell me.
I finally mustered up the courage to go back in August, I made my appointment and had my PAP. About a week later I get a call from my doctor's office, they said she wanted me to come in as soon as possible to get a colposcopy so she could do a biopsy. And boy did that scare me! I made the appointment and again feared the day that was looming. After all, if you don't get tested, it isn't real, right? Going in and having them tell you that they want to test you for cancer means there is no turing back, there is no more pretending that it's not there, that your fine. Wrong. That just lets it fester and grow.
I had my biopsy in September and had to wait the normal 2 weeks for the results. But to top things off, we had a hurricane hit right in the middle of all of this! So for all I knew, my "specamines" were ruined or lost and I would have to do this all over again. I called my doctor's office after everything started opening back up to ask if there would be a delay in getting the results, after all, for all I knew they shipped them somewhere else for testing. Luckily, they got them back in the normal 2 weeks, but boy was that the longest two weeks of my life.
When I got "the call" I was at work so I had to run off and find an empty conference room somewhere so that I could talk in private. When I answered, the nurse said that the doctor wanted to talk to me herself. I just knew it was bad news, they never talk to you themselves about test results unless it's something bad, right? When she finally came on, she didn't come right out and say yes it was cancer, or no it's not. She just listed my previous history: diagnosed in March 2006 with HPV, told in February 2007 I needed a colposcopy, had a PAP in August 2008, and had the biopsy done 2 weeks before. She FINALLY said that it was not cancer. I had to ask her 3 times just to make sure I heard her right!
She told me that she wanted me to have something called a cone biopsy using the LEEP procedure, and of course I had no cluse as to what either of those 2 were. She said that it indeed was "cancer free" but it was very advanced mutation and she wanted me to have the tumors removed as soon as possible. I had no clue what any of this meant, but I agreed. 30 minutes later he scheduling nurse called me and wanted me to make my appointment for the next week. Unfortunately I had to wait 2 weeks due to my schedule.
Sorry to end this abruptly, but it is getting late, and my daughter will have me up early. I will try to post more tomorrow night.
Monday, October 13, 2008
Taking my time
This is mainly a journal for myself, but I would also like to share my story with as many people as I can. Please be patient with me, as I am also a single mother so my free time is limited. I hope to get the beginning of my story up later this week.
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