This year can't possibly be coming to an end in 5 hours. How did this happen? Why is it that as we grow older, each year goes by a little quicker than the last? It's the craziest thing!
My husband is working, Rebecca is at a party, and I am sitting here at the computer in my mother's giant house all alone!! The only sounds I hear are they typing keys and the rain hitting the windows. It would seem a little eerie if I were going to remain alone all night, but here shortly I will be joining some great friends for New Year's Eve. Rebecca was suppose to spend the night with her friend, but I can't ring in a new year without her! It just wouldn't feel right...so I will be picking her up early. Someday, she will understand.
This new year coming, I plan on "Making a Difference" in others lives. It would be easy for me to ignore this latest battle that I'm now fighting for breast cancer, but I can't. My mission is to put a stop to this, not only for my sake but for all of us. The last few hours, I have been online emailing various news stations, and the drug company that makes Avastin in hope that they will read my blog and let my story be told. This next week, I plan on making hard copy letters to send out to our elected officials on this matter. I will gather addresses and even post a letter that you could sign and send. Thanks to all of you for your continued support. It amazes me the great ideas that you come up with. Please continue to ask others to join in on the efforts, there is strength in numbers! This is your opportunity to "Make a Difference" for all Americans. This decision will impact all of us and many generations to come. Like I said, it's not just about me, it is about our right to live.
Thanks!! Happy New Year!! God Bless!
About Me
- Julie Heppe
- This blog really isn't designed to be about ME, however I am willing to share my life with you so that you can gain knowledge about living with cancer, the importance of continued research in cancer fighting drugs, and how the FDA's decisions on releasing or pulling a drug from cancer patients can greatly impact many lives. While my cancer is advanced breast cancer, I am fighting for all cancers, and actually life in general. My life has been directly affected by many other cancers as family members, friends and chemo buddies have died from various cancers. Each one of these people have shaped my life and I am fighting to honor their fight, and to continue fighting for all of us touched by this horible disease in some way. Most of all, I'm fighting for the right of my 11 year old daughter to continue having a healthy mother, and for my Husband and Mother to keep them from the pain and torment that comes from seeing a loved one die from cancer. The FIGHT IS ON!! Please join me!!!
Friday, December 31, 2010
Wednesday, December 29, 2010
Bad Dream!!
Sleep is out of the question right now. Every moment I have, I feel as though I must continue this effort. I was up all night and day creating this blog. I finally walked away from my phone and computer around 1:30 PM so that I could get in the shower and get Rebecca to her best friends birthday party. It was fun watching Rebecca and her friends playing WI dance games, not a care in the world...fun, laughter, great friends, music, dancing, and cake! Life is GOOD!! In those moments I forgot about the burden I carry knowing that I have a mission that is far greater than anything I've ever attempted. Once the guest left, I felt a tension headache creeping up (probably from lack of sleep) and I took some Tylenol and layed down in Tina's guest room while Rebecca and Ali continued laughing and being 11 and 12 year olds. I drifted off to sleep for about an hour, then woke up to this "Bad Dream" that haunts me as I'm awake. I went to the computer to see what was in the news today on this Avastin tragedy, and the first article that I pulled up made my skin crawl and stomach turn as I read about other women just like me that have been on this drug as long as I have and they too have had incredible results. I posted this article for you to read. Please, if you have the time, read the article. I am trying hard to only present the facts and to keep myself calm about how crazy this is making me, but as I read this article I thought to myself, maybe I'm not fighting hard enough. These people put it out there on the line, holding nothing back. This IS serious, not just me over reacting. I have to do more. I need to be heard. When I learned of this news on Dec. 16th, my initial reaction was that I was going to saddle up my horse and ride to Washington. Why? Because by doing this, I would be able to draw a lot of attention to my cause and possibly stir up media attention nation wide. My rebellious side thought, well I'll just show them what a stage 4 cancer patient on Avastin looks like. I would like the world to see that I AM LIVING with cancer, not dying...and LIVING is what I do!! I enjoy my life. My family and I travel to rodeos with my daughter, camp out with our horses on weekends, and ride rough rugged trails all day then sit under the stars in front of a camp fire at night. I am ALIVE...I am LIVING!!! Who has the right to take this from me?!?! I need to find another approach to be heard. I am one of thousands out there. I wish I new how to reach all of the women out there like me so we could unite as a force and take our battle to a new level.
I realize that it is difficult to grasp all of this when you aren't actually living it. Even some of my own family members aren't understanding the dimensions of harm this decision has weighing on me and others. My best friend ever has that special ability to actually feel the pain of others. I've always hated this for her because it seems like she takes on more than she deserves. I've often wondered if this is a curse or a blessing to her, but she truly feels others pain. At the same time, she also feels the happy times too. What a precious person and how blessed I am to have her. I said all of this to say that I understand that it is hard to feel what another person is going through. The life styles that we lead are so fast paced and self indulged that it sometimes causes us to build up a barrier around ourselves and ignore the bad things going on around us. I'm guilty of the same. I rarely watch the news because it's all bad. But suddenly I see that behind every bad story is a person in pain, and who am I to turn away from this just because I don't want to hear bad news. At the very least I could send up prayers on behalf of those hurting. I see the world in a different light now, I can't turn away any longer. I hope that I can become more like my best friend because I am learning that she has the most precious soul ever and she has the ability to make a difference in others lives.
Thanks for reading!! PLEASE, pass this blog on to everyone you know. If it could land in the right hand, then maybe my life could make a difference in so many others.
Until tomorrow, GOD BLESS!
I realize that it is difficult to grasp all of this when you aren't actually living it. Even some of my own family members aren't understanding the dimensions of harm this decision has weighing on me and others. My best friend ever has that special ability to actually feel the pain of others. I've always hated this for her because it seems like she takes on more than she deserves. I've often wondered if this is a curse or a blessing to her, but she truly feels others pain. At the same time, she also feels the happy times too. What a precious person and how blessed I am to have her. I said all of this to say that I understand that it is hard to feel what another person is going through. The life styles that we lead are so fast paced and self indulged that it sometimes causes us to build up a barrier around ourselves and ignore the bad things going on around us. I'm guilty of the same. I rarely watch the news because it's all bad. But suddenly I see that behind every bad story is a person in pain, and who am I to turn away from this just because I don't want to hear bad news. At the very least I could send up prayers on behalf of those hurting. I see the world in a different light now, I can't turn away any longer. I hope that I can become more like my best friend because I am learning that she has the most precious soul ever and she has the ability to make a difference in others lives.
Thanks for reading!! PLEASE, pass this blog on to everyone you know. If it could land in the right hand, then maybe my life could make a difference in so many others.
Until tomorrow, GOD BLESS!
The Fight is On!!
December 16th, 2010 , treatment day for me. No big deal, I have cancer treatment every other week for advanced breast cancer. Almost two years now of a treatment drug called Avastin, and to look at me, you would NEVER know that I battle cancer. I like it this way! I was diagnosed with cancer 18 years ago, and have been fighting it non stop, with the exception of a few years hear and there, but no matter what, it would always come back. Treatments? I've had them all! Literally!! So when I was ready to quit treatment two years ago, as it didn't seem to be helping, and gave me absolutely no quality of life, you can imagine how excited I was to hear my doctor tell me of a new drug that was just approved for the use in advanced breast cancer, and that this drug didn't have the side effects that the previous chemo had. My mind was wondering, "why on earth am I just hearing about this"...."Let's do it!"
That's where this story begins. Yes, my quality of life came back! Not only that, but my tumors stopped in their tracks as if frozen in time. We can all live with cancer, as long as one of two things don't happen, 1-the cancer continues to grow taking over vital organs and mechanisms in the body needed for survival, or 2- the cancer treatment itself doesn't kill you first. Thankfully, my cancer responded to the drug well. Yes, there are some serious side effects, as there are with all cancer drugs. I take blood pressure medicine daily, and have to be aware of what my body tells me so that I can report anything unusual to my doctors. That's not a big deal to me. I learned about 8 years ago, that I have to be my own advocate in my health care. So, yes, I bug my doctors all the time, get things checked often, and so far I haven't had any side effects other than the blood pressure.
So my life was back!! Riding horses often with my family, camping, floating the rivers, and working all became my life again. There are times that my life seems so normal that I actually forget about cancer. I often have to do a reality check with myself and remember that this drug may continue to stop working as the others did, but for now I am so thankful to feel well.
Ok, back to December 16th, I came home from treatment and went to sleep. Treatment only makes me sleepy for the day because of benedryl given directly into a port that goes into my main artery, not from the avastin. I woke up that evening and the news was on. I heard the words FDA and Avastin, so I quickly rewind to hear the story. I had an idea this was going to be happening, since they have threatened to do this for the past 6 months, but I couldn't believe my ears!! The FDA recommends that Avastin to no longer be used as a treatment for advanced breast cancer due to the amount of times that this drug allows a patients life to be extended is on average 2 weeks to 2 months. They go on to say that avastin will still be available for breast cancer patients, but would not be covered by any government health care. The private insurance companies follow the same guidelines that the government does when it comes to deciding which drugs they will cover. The patients could pay for the treatment out of pocket, that is if you have an extra $60,000 to $100,000 a year. That is what the generic form of Avastin would cost patients. The FDA says that the cost of the drug was not considered into the decision, lets just assume that's true. If the FDA is merely going by the fact that the patients lives were not prolonged enough, who decides the amount of time a drug can prolong a normal life? Does time alone not hold value? I'd like the FDA to look at my 11 year old daughter and tell her that they would no longer allow me to continue Avastin, because my life expectancy is short at this time. I've been on this drug now for 22 months, and if I have had 22 months of "progression free disease" , don't you think there are others out there just like me that this drug has extended their lives by almost 2 years. You better believe there are. So what if I was one of the ones that only could get the two weeks extension. Who would deny any child, mother, husband, sister, and friend that extra time they could cherish with their loved one?
I have often wondered why I am still living with cancer after all these years. Why is it that I lose loved ones to this disease, and I don't even feel the effects from the disease? I often feel guilty for actually LIVING my life with cancer while others are battling. Even my 12 year old nephew Christain told his mom this, "Mom, I'm going to ask Aunt Julie why she never dies from cancer and everyone else does." When she told me this, I thought, "Now see, I'm not the only one wondering this!"
Now I know why I have this disease. It has all been unfolded right in front of me. I have to become the voice that speaks for the continuation of this drug. Not only for myself and my family, but for everyone with every disease. You see, if we sit back and allow the FDA to decide to withdraw drugs from their approval based on what they consider to be a short amount of time the drug prolongs a life, then we are actually letting them ration drugs to us, and play God in our health care. I can't sit back and be quiet about this. It is wrong and immoral! The other claim the FDA has about serious side effects of the drug doesn't support a strong case, because all cancer drugs come with serious side effects. Actually, don't all drugs come with serious side effects?!?!?!? Really, don't they? I'm sure most of us could list all the side effects of Viagra since it's shoved down our throats every time we turn on the TV. What do you think would happen if the FDA suddenly disapproved of this drug?!?!?!? That would never happen, because as the last 20 years have continued to show that the elected men in Washington are pretty fond of their libido. So to claim the side effects are to risky to a terminal cancer patient is lame!!
Please join with me to fight this FDA decision, and to persuade our voted officials to vote for what is right. Please share this blog with as many people you know. I will be posting here every day, as I am searching for ways that my story can be told at a National level.
Thank You!! and God Bless!!
That's where this story begins. Yes, my quality of life came back! Not only that, but my tumors stopped in their tracks as if frozen in time. We can all live with cancer, as long as one of two things don't happen, 1-the cancer continues to grow taking over vital organs and mechanisms in the body needed for survival, or 2- the cancer treatment itself doesn't kill you first. Thankfully, my cancer responded to the drug well. Yes, there are some serious side effects, as there are with all cancer drugs. I take blood pressure medicine daily, and have to be aware of what my body tells me so that I can report anything unusual to my doctors. That's not a big deal to me. I learned about 8 years ago, that I have to be my own advocate in my health care. So, yes, I bug my doctors all the time, get things checked often, and so far I haven't had any side effects other than the blood pressure.
So my life was back!! Riding horses often with my family, camping, floating the rivers, and working all became my life again. There are times that my life seems so normal that I actually forget about cancer. I often have to do a reality check with myself and remember that this drug may continue to stop working as the others did, but for now I am so thankful to feel well.
Ok, back to December 16th, I came home from treatment and went to sleep. Treatment only makes me sleepy for the day because of benedryl given directly into a port that goes into my main artery, not from the avastin. I woke up that evening and the news was on. I heard the words FDA and Avastin, so I quickly rewind to hear the story. I had an idea this was going to be happening, since they have threatened to do this for the past 6 months, but I couldn't believe my ears!! The FDA recommends that Avastin to no longer be used as a treatment for advanced breast cancer due to the amount of times that this drug allows a patients life to be extended is on average 2 weeks to 2 months. They go on to say that avastin will still be available for breast cancer patients, but would not be covered by any government health care. The private insurance companies follow the same guidelines that the government does when it comes to deciding which drugs they will cover. The patients could pay for the treatment out of pocket, that is if you have an extra $60,000 to $100,000 a year. That is what the generic form of Avastin would cost patients. The FDA says that the cost of the drug was not considered into the decision, lets just assume that's true. If the FDA is merely going by the fact that the patients lives were not prolonged enough, who decides the amount of time a drug can prolong a normal life? Does time alone not hold value? I'd like the FDA to look at my 11 year old daughter and tell her that they would no longer allow me to continue Avastin, because my life expectancy is short at this time. I've been on this drug now for 22 months, and if I have had 22 months of "progression free disease" , don't you think there are others out there just like me that this drug has extended their lives by almost 2 years. You better believe there are. So what if I was one of the ones that only could get the two weeks extension. Who would deny any child, mother, husband, sister, and friend that extra time they could cherish with their loved one?
I have often wondered why I am still living with cancer after all these years. Why is it that I lose loved ones to this disease, and I don't even feel the effects from the disease? I often feel guilty for actually LIVING my life with cancer while others are battling. Even my 12 year old nephew Christain told his mom this, "Mom, I'm going to ask Aunt Julie why she never dies from cancer and everyone else does." When she told me this, I thought, "Now see, I'm not the only one wondering this!"
Now I know why I have this disease. It has all been unfolded right in front of me. I have to become the voice that speaks for the continuation of this drug. Not only for myself and my family, but for everyone with every disease. You see, if we sit back and allow the FDA to decide to withdraw drugs from their approval based on what they consider to be a short amount of time the drug prolongs a life, then we are actually letting them ration drugs to us, and play God in our health care. I can't sit back and be quiet about this. It is wrong and immoral! The other claim the FDA has about serious side effects of the drug doesn't support a strong case, because all cancer drugs come with serious side effects. Actually, don't all drugs come with serious side effects?!?!?!? Really, don't they? I'm sure most of us could list all the side effects of Viagra since it's shoved down our throats every time we turn on the TV. What do you think would happen if the FDA suddenly disapproved of this drug?!?!?!? That would never happen, because as the last 20 years have continued to show that the elected men in Washington are pretty fond of their libido. So to claim the side effects are to risky to a terminal cancer patient is lame!!
Please join with me to fight this FDA decision, and to persuade our voted officials to vote for what is right. Please share this blog with as many people you know. I will be posting here every day, as I am searching for ways that my story can be told at a National level.
Thank You!! and God Bless!!
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