So, if you have not had a chance to buy the book, so to speak, you can read MY THIRD LUNG online at the link I have attached. The KC Star printed a picture of me, which you will see, along with a brief summary of my cancer journey. They put that information in their actual paper. Then they were able to make the full story available online, based on the approval of my publisher. Very cool of everyone involved. Publishers don't really want to make that information available so it was very kind of Adams Media.
If you are wondering when my next piece of published work will come out, I can not guarantee anything with that yet. However, the big push for the Pass It On! mailing is going out tomorrow, with the wonderful man-power of my parents and my sister. I will have one more mailing by the end of the year, but the big part of that is over. I am still working on outlining my book so that I can get it to agents. I haven't even had time to figure out who my targeted agents are, but they should probably WATCH OUT! That is a goal for me for the beginning of 2009.
With all the breast cancer awareness things going on and me having been in the hospital for a bit of this month and travelling to Jeff City, MO for trial "stuff"...my daughter and son are starting to feel the effects of those schedule issues. So, I have promised them that I will focus my writing and blog time to when they are busy at school or at a friends.
I plan on making November and December pretty festive months for them. I also plan on getting a lot of writing done when I can, but as I said in the news interview with Kelly Eckerman...to Michael and me, the kids come first. We will take them to my treatments at Jeff City, when their schedule allows, so they will get comfortable with that and some new doctors. But, the big thing for them is having Mommy take them to school and pick them up and play all I can with them. So, that will be my first priority.
I will try to write on the blog when they are at school or when they are in bed at night. The same will be true for the book and any other writing I do with my friend Tina Herold. I will keep you all posted about my health and try to educate you about this trial, as best I can. But, please consider me to be a well person. Like the title of this blog says, this is the story of a young mother living with cancer. (The implied commment thereafter is that I am not dying with it.) I plan on being here a long time. And this plan is based on real hope and real information, not just fluff.
Thanks for reading and keeping up with my story. I hope that I can throw just a little inspiration or hope your way. My main thing is that I am trying to educate you so that you will believe in your ability to navigate through the health system. We all have issues to deal with...mine is cancer, for another person, it could be heart disease or arthritis or diabetes or obesity. Regardless of what it is, addressing the issue in a preventive and/or treatable fashion is the best thing you can do for yourself! Begin NOW!
Blessings,
Lolo
Thursday, October 30, 2008
Tuesday, October 28, 2008
Good news!
Hi friends, Just a quick update. It has been a busy week or so. I wanted to let you all know that although I was rejected from the clinical trial a couple of weeks ago...I sent an impassioned e-mail to the coordinator. It included a link to the news story that Kelly Eckerman did on me, as well as some pictures of me. One picture was of Morgan and me...it was pretty sweet.
I wanted to help them understand that I am not just a number, but a person. And that for the most part...I have done great on medicines/surgeries/etc. There has really only been one medicine that caused me problems and that was one that we did earlier this year for a couple of months. And, it is not similar to the clinical trial drug, in any way.
So, to make a long story short, it worked! Somehow, I got myself in the clinical trial. Though my doctors pushed so hard for me to get in, it was my personal e-mail that did it. The trial coordinator was amazing and responded to me immediately. He said that he would do his best to get me in and that his colleagues would also.
Then, we heard from the coordinator from Jefferson City later in the day. She said we got approval! They were ecstatic. So, Michael and I had to run down to Jeff City, MO on Friday morning to redo my scans...everything has to be done in a two-week window for these trials so my scans had expired. We did that, though, and then headed home.
The doctor has looked at the CT scans and my residual tumors are not really growing, which is also good news. I am certain that this new medicine will shrink these tumors even more and push me into a continued stable state. The neat thing about the drug is that it has the power of a chemotherapy, but it only targets cancer cells.
They will also have me do scans and reports about every six weeks so I will be monitored heavily, which is nice. Like I said, I am a responder. I do well with these types of drugs and I have no doubt that I will do well on this medicine. I am thankful, so grateful that they have let me in. I am appreciative of the opportunity to share my experiences...but, first and foremost, to keep myself healthy.
Blessings,
Lolo
I wanted to help them understand that I am not just a number, but a person. And that for the most part...I have done great on medicines/surgeries/etc. There has really only been one medicine that caused me problems and that was one that we did earlier this year for a couple of months. And, it is not similar to the clinical trial drug, in any way.
So, to make a long story short, it worked! Somehow, I got myself in the clinical trial. Though my doctors pushed so hard for me to get in, it was my personal e-mail that did it. The trial coordinator was amazing and responded to me immediately. He said that he would do his best to get me in and that his colleagues would also.
Then, we heard from the coordinator from Jefferson City later in the day. She said we got approval! They were ecstatic. So, Michael and I had to run down to Jeff City, MO on Friday morning to redo my scans...everything has to be done in a two-week window for these trials so my scans had expired. We did that, though, and then headed home.
The doctor has looked at the CT scans and my residual tumors are not really growing, which is also good news. I am certain that this new medicine will shrink these tumors even more and push me into a continued stable state. The neat thing about the drug is that it has the power of a chemotherapy, but it only targets cancer cells.
They will also have me do scans and reports about every six weeks so I will be monitored heavily, which is nice. Like I said, I am a responder. I do well with these types of drugs and I have no doubt that I will do well on this medicine. I am thankful, so grateful that they have let me in. I am appreciative of the opportunity to share my experiences...but, first and foremost, to keep myself healthy.
Blessings,
Lolo
Sunday, October 26, 2008
If you get the Kansas City Star...
Looks like I am going to be in the Kansas City Star FYI section this week. If you don't get The Star, you can still access my full story, MY THIRD LUNG, by checking out the paper online. There will also be a little story about me, my breast cancer history, and Pass It On!
The publisher, Adams Media, was gracious enough to release the story to The Star so that they can print it in full. Very kind.
Blessings,
Lolo
The publisher, Adams Media, was gracious enough to release the story to The Star so that they can print it in full. Very kind.
Blessings,
Lolo
Wednesday, October 22, 2008
Out of the hospital!
Michael and I got me out of the hospital yesterday morning. One of the female doctors and a nurse practitioner really pushed to get me out of there in the morning. It was very kind of them. I am still not feeling great as they have me on steroids to reduce inflammation. I am winding down off of that drug, but it wreaks havoc on my body. It makes me super nervous and causes fluid retention. Besides the fact that they pumped so much fluid through me while in the hospital, now my body thinks it should retain that fluid because of the many drugs they have me on. However, I am trying not to complain. It just makes me feel a little bad.
So, I am going to rest and recuperate over the weekend and see where I am at. I need to use these drugs to help my body to heal from the procedure so I will just take them. I will suck it up, but it isn't easy. Morgan is out of school tomorrow and the next day so we are just going to hang during the day and I probably won't blog much. I am going to see my oncologist on Friday so I will know a little more about my new meds. I will let you all know when I know....
Until then, I plan on taking it easy and getting life back to normal for Michael, Morgan, Jack with me.
With love,
Lolo
So, I am going to rest and recuperate over the weekend and see where I am at. I need to use these drugs to help my body to heal from the procedure so I will just take them. I will suck it up, but it isn't easy. Morgan is out of school tomorrow and the next day so we are just going to hang during the day and I probably won't blog much. I am going to see my oncologist on Friday so I will know a little more about my new meds. I will let you all know when I know....
Until then, I plan on taking it easy and getting life back to normal for Michael, Morgan, Jack with me.
With love,
Lolo
Monday, October 20, 2008
If you have Lifetime Channel...
First of all, thanks so much for your positive comments to me! I know that you all rock. I also know that it is difficult for some people to make comments on this blog...so please do not worry if you wanted to make a comment and you didn't. I have a great imagination and I envision a world of supporters out there holding me up. I know there are many and I appreciate all of YOU!
Okay, now to a status update before I talk about the Lifetime movie I am now pedaling. I had a procedure today to clean out my blocked bile duct. They had put the stint in before. Actually, they had put a temporary stint in before. Then they put in a larger, more permanent one after that. Now, for some reason, there was a blockage...so they cleaned it out.
Apparently, this can just happen with stints because they are not a natural part of your body. I just have to be mindful of it, like if I get fevers in the future or something. It could be related to the stint. The in-house oncology team here is great and I spent a lot of time Friday asking the doctor questions so I could know how to anticipate the future. I don't think I will get an infection in the future...at all, however, I just always have to have that type of information so I can be prepared. That's just my way since I got cancer. I have to have all my ducks in a row and lead my medical team.
As always, with me and surgery or procedures...everything went well. The G/I doctors said I could go home today, but the in-house oncology team wanted to observe me for one more night and keep me on I/V drugs. That part is not fun because they have pumped me with a lot of excess fluids to keep the I/V open when they aren't giving me antibiotics. I have put on like 10 lbs of fluid weight. I could care less from an aesthetic perspective (I mean, once you lost your hair, vanity gets pushed aside.:) It has just made me swollen and it stresses the lymphatic system out.
Side tangent about the lymphatic system: The lymphatic system is really cool because it works to pull fluids from your appendages. Yet, with breast cancer survivors, or any cancer survivor for that matter...we have had lymph nodes removed to be tested. So, for me, I had 5 lymph nodes removed when I was diagnosed four years ago. That was on my left side near my arm. So, I always have to watch that arm that it won't get a condition called "lymphedema", where the lymph nodes near that area can't pull the fluid out of the arm anymore and it can get very strange looking.
I don't have a major issue with lymphedema because I watch it. I exercise the arm a lot and never stress it out. I can never get blood pressure or any I/V's in that arm so Michael and I are always vigilent about making sure all hospital people know this. Yet, I had my sister bring my compression sleeve down here to the hospital for me so I could make sure to keep fluid off of that arm as best I can. Right now, it is swollen like the rest of me. Everything will return to normal when I get off the I/V fluids. Hopefully, Michael will bust me outta here tomorrow!
Last thing, the Lifetime movie...so Lifetime had a great movie on Saturday night about my type of breast cancer, which is driven by the her2neu protein. I always talk about this drug called Herceptin and how it changed the face of this disease for me and my co-survivors that are her2 positive. Yet, I know it is kind of hard for everyone to understand if you are not obsessive, like me, and entrenched in the science of it.
So, I am recommending this movie to you. It is called "Living Proof". Harry Connick, Jr. plays the doctor who invented Herceptin, Dr. Slamon. They do such a thoughtful job of explaining the disease and why it is so aggressive and why Herceptin has helped. I say this being a very picky person when it comes to cancer in movies. Many movies get it wrong and end up scaring people by doing more harm than good. That is not the case with this movie. It will be emotional, but you will learn a lot from it.
I know I have been through a lot with fighting my disease, but Herceptin (and the inventions that came about because of Dr. Slamon's idea to attack the protein) are part reason to why I am able to fight against my disease. Before Herceptin, there was not much of a fighting chance for us her2 girls. It is just a blatant fact. I always think of people who are my age, but who lost their mothers to breast cancer when I was young and I wonder if they had her2 disease. I don't think all women were even tested for it before Dr. Slamon came along.
But, now so many of us with her2 type breast cancer, are living cancer free or living with a stable situation. It is because of Dr. Slamon that this reality was made possible...that we have an ability to fight. I am thankful to him and now that I actually know his name, I plan on thanking him in some personal way...by figuring out his email or mailing him a card. I will figure it out somehow.
Because of his dogged approach to fighting, my story changed to a story of victory from the beginning (plus, I believe there is divine intervention involved). Healing was always a part of my equation and even though I am dogged in my fight, tenacity pays off. Dr. Slamon IS living proof of that. I have been inspired by him and this movie...and I am a tough sell. I was skeptical going in, but Lifetime was very thoughtful. If you have Lifetime Channel, you may want to consider watching it. It will not only educate you about breast cancer, but about cancer in general. Other types of cancer use this approach, too.
You can click on the link to this post to get to the Lifetime website for "Living Proof". I will also put a link to the left. I am sure they will show it the rest of this month.
Blessings,
Lolo
Okay, now to a status update before I talk about the Lifetime movie I am now pedaling. I had a procedure today to clean out my blocked bile duct. They had put the stint in before. Actually, they had put a temporary stint in before. Then they put in a larger, more permanent one after that. Now, for some reason, there was a blockage...so they cleaned it out.
Apparently, this can just happen with stints because they are not a natural part of your body. I just have to be mindful of it, like if I get fevers in the future or something. It could be related to the stint. The in-house oncology team here is great and I spent a lot of time Friday asking the doctor questions so I could know how to anticipate the future. I don't think I will get an infection in the future...at all, however, I just always have to have that type of information so I can be prepared. That's just my way since I got cancer. I have to have all my ducks in a row and lead my medical team.
As always, with me and surgery or procedures...everything went well. The G/I doctors said I could go home today, but the in-house oncology team wanted to observe me for one more night and keep me on I/V drugs. That part is not fun because they have pumped me with a lot of excess fluids to keep the I/V open when they aren't giving me antibiotics. I have put on like 10 lbs of fluid weight. I could care less from an aesthetic perspective (I mean, once you lost your hair, vanity gets pushed aside.:) It has just made me swollen and it stresses the lymphatic system out.
Side tangent about the lymphatic system: The lymphatic system is really cool because it works to pull fluids from your appendages. Yet, with breast cancer survivors, or any cancer survivor for that matter...we have had lymph nodes removed to be tested. So, for me, I had 5 lymph nodes removed when I was diagnosed four years ago. That was on my left side near my arm. So, I always have to watch that arm that it won't get a condition called "lymphedema", where the lymph nodes near that area can't pull the fluid out of the arm anymore and it can get very strange looking.
I don't have a major issue with lymphedema because I watch it. I exercise the arm a lot and never stress it out. I can never get blood pressure or any I/V's in that arm so Michael and I are always vigilent about making sure all hospital people know this. Yet, I had my sister bring my compression sleeve down here to the hospital for me so I could make sure to keep fluid off of that arm as best I can. Right now, it is swollen like the rest of me. Everything will return to normal when I get off the I/V fluids. Hopefully, Michael will bust me outta here tomorrow!
Last thing, the Lifetime movie...so Lifetime had a great movie on Saturday night about my type of breast cancer, which is driven by the her2neu protein. I always talk about this drug called Herceptin and how it changed the face of this disease for me and my co-survivors that are her2 positive. Yet, I know it is kind of hard for everyone to understand if you are not obsessive, like me, and entrenched in the science of it.
So, I am recommending this movie to you. It is called "Living Proof". Harry Connick, Jr. plays the doctor who invented Herceptin, Dr. Slamon. They do such a thoughtful job of explaining the disease and why it is so aggressive and why Herceptin has helped. I say this being a very picky person when it comes to cancer in movies. Many movies get it wrong and end up scaring people by doing more harm than good. That is not the case with this movie. It will be emotional, but you will learn a lot from it.
I know I have been through a lot with fighting my disease, but Herceptin (and the inventions that came about because of Dr. Slamon's idea to attack the protein) are part reason to why I am able to fight against my disease. Before Herceptin, there was not much of a fighting chance for us her2 girls. It is just a blatant fact. I always think of people who are my age, but who lost their mothers to breast cancer when I was young and I wonder if they had her2 disease. I don't think all women were even tested for it before Dr. Slamon came along.
But, now so many of us with her2 type breast cancer, are living cancer free or living with a stable situation. It is because of Dr. Slamon that this reality was made possible...that we have an ability to fight. I am thankful to him and now that I actually know his name, I plan on thanking him in some personal way...by figuring out his email or mailing him a card. I will figure it out somehow.
Because of his dogged approach to fighting, my story changed to a story of victory from the beginning (plus, I believe there is divine intervention involved). Healing was always a part of my equation and even though I am dogged in my fight, tenacity pays off. Dr. Slamon IS living proof of that. I have been inspired by him and this movie...and I am a tough sell. I was skeptical going in, but Lifetime was very thoughtful. If you have Lifetime Channel, you may want to consider watching it. It will not only educate you about breast cancer, but about cancer in general. Other types of cancer use this approach, too.
You can click on the link to this post to get to the Lifetime website for "Living Proof". I will also put a link to the left. I am sure they will show it the rest of this month.
Blessings,
Lolo
Sunday, October 19, 2008
Weekend update.
This weekend has been kind of crazy, but I wanted to take a second to update the blog. First of all, Morgan had an amazing 8th birthday/slumber party Friday night. She also got a bike from us and she learned how to ride it already. She is amazing! Jack had a blast hanging with Morgan's friends!
Unfortunately for me, I wasn't able to be at the party or be there when she learned to ride her bike. My fever spiked pretty high in Thursday so my oncologist thought I might have an infection with my liver stent. And he was right. We came into the hospital Thursday night and once they get you in here, it is hard to get out. It took them a day or two to determine that I have an infection due to the stent not doing what it should be doing. They did a chest x-ray and an abdominal ultrasound so they were able to confirm that it is a blocked duct and they can fix the blockage. The cancer is still stable,as it was before.
My family, Michael's family, and some very trusty neighbors and friends pitched in to help with the kids. It was very important to me that Morgan have her party and that my hospital stay cause the least amount of chaos for the kids and Michael. Though Mo and Jack have had some"sad" moments...we just talk about them and help them understand that I am okay. If the stent is having a problem, then that us why I feel bad. So if I get it fixed...or have the doctors go in like before and clean out the blocked area, then that is good.
Don't get me wrong, I am frustrated that I am in the hospital and that I will be here a little longer...probably until Tuesday. But now I have the in-hospital oncology team who will evaluate me after my procedure tomorrow afternoon to make sure the stent is working well. I haven't felt good since before the first stent, but we will make sure it works and we get this issue resolved. So when I go home, I know my life can get back to normal. I have been craving normal for so long. But with chemo all summer and trying to get in the trial, we have had moments of normal interspersed with a lot of chaos. I plan on changing that for the better immediately.
I think this hospital stay has reminded me that although I want to help so many others with a positive message of hope regarding breast health, Michael, Morgan, Jack and me come first. Although I want you all to speak up for yourselves when it comes to yourselves, I guess I still have some lessons to learn too.
So I am going to spend some time while I am in the hospital establishing goals and boundaries for my family and me first...then other things after that. I will update the blog later in the week with my new medicines and new ideas. However, I don't like to be fussed over so I don't want people to send flowers or make a big deal about this procedure I am having. It is a minor hiccup in a situation where I have gone through much worse things. I am on the mend and I plan on working on building a sustainable daily life for the future.
Sorry about any typos. This post is from my iPhone and it spellchecks things in a strange way. I guess if you want to do anything for me, just send positive thoughts my way or write a nice comment. Anything more than that would not be something I wanted.
God bless,
Lolo
Unfortunately for me, I wasn't able to be at the party or be there when she learned to ride her bike. My fever spiked pretty high in Thursday so my oncologist thought I might have an infection with my liver stent. And he was right. We came into the hospital Thursday night and once they get you in here, it is hard to get out. It took them a day or two to determine that I have an infection due to the stent not doing what it should be doing. They did a chest x-ray and an abdominal ultrasound so they were able to confirm that it is a blocked duct and they can fix the blockage. The cancer is still stable,as it was before.
My family, Michael's family, and some very trusty neighbors and friends pitched in to help with the kids. It was very important to me that Morgan have her party and that my hospital stay cause the least amount of chaos for the kids and Michael. Though Mo and Jack have had some"sad" moments...we just talk about them and help them understand that I am okay. If the stent is having a problem, then that us why I feel bad. So if I get it fixed...or have the doctors go in like before and clean out the blocked area, then that is good.
Don't get me wrong, I am frustrated that I am in the hospital and that I will be here a little longer...probably until Tuesday. But now I have the in-hospital oncology team who will evaluate me after my procedure tomorrow afternoon to make sure the stent is working well. I haven't felt good since before the first stent, but we will make sure it works and we get this issue resolved. So when I go home, I know my life can get back to normal. I have been craving normal for so long. But with chemo all summer and trying to get in the trial, we have had moments of normal interspersed with a lot of chaos. I plan on changing that for the better immediately.
I think this hospital stay has reminded me that although I want to help so many others with a positive message of hope regarding breast health, Michael, Morgan, Jack and me come first. Although I want you all to speak up for yourselves when it comes to yourselves, I guess I still have some lessons to learn too.
So I am going to spend some time while I am in the hospital establishing goals and boundaries for my family and me first...then other things after that. I will update the blog later in the week with my new medicines and new ideas. However, I don't like to be fussed over so I don't want people to send flowers or make a big deal about this procedure I am having. It is a minor hiccup in a situation where I have gone through much worse things. I am on the mend and I plan on working on building a sustainable daily life for the future.
Sorry about any typos. This post is from my iPhone and it spellchecks things in a strange way. I guess if you want to do anything for me, just send positive thoughts my way or write a nice comment. Anything more than that would not be something I wanted.
God bless,
Lolo
Thursday, October 16, 2008
Feeling better, even today.
This morning, I am UP bright and early. I got some great sleep, courtesy of Ambien and Tylenol PM. I took these because the steroid they gave me, Decadron, causes major sleep issues. Without the sleep aid, I would literally be up all night...and have been for many a night the past couple of months.
Anyway, I got some great sleep and woke up at like 5:30! I am feeling a lot better today from the antibiotic my doctor gave me. It seems to manage the fever pretty well. I am sure I have some unnamed infection of irrelevance, but it does not matter. When it impairs daily life, that is when I want to have it treated.
A couple of weeks ago, I was on the news here in KC. I know most of you know this. I am not trying to brag as I am not really sure why I am getting all of this attention right now. I won a breast cancer advocate award and was also in a fashion show. So crazy.
In between those times when I was involved with these events, Michael and I have been re-routing our schedule to go to Jeff City and therefore re-routing the kid's schedules. September and October have been wild months...not bad months, just busy. November will be a month to recuperate.
I am telling you all of this because I want you to understand that my fighting my cancer is still and will always be a job to me. I take it on with professionalism and candor like I would a real job. I have spent two hours this morning researching drugs to discuss with my oncologist. I am not sure which way he wants to go so I am just preparing myself.
Though the attention has been kind and I am truly thankful for it, I am also humbled by it. You see, for some reason, I get to be the messenger in this whole crazy story. Little old me. I get to find purpose throug my situation and I truly get to help other people. I am a caregiver, at heart, so I love to give.
I am working on balance in this regard, but I think my priorities are more in check than ever before and it is exciting. I am continually humbled by all the flaws I have. If I continue to feel better this weekend, then my family and I will feverishly work on preparing the Pass It On! mailing to get out the last week in October.
Tina and I also have one speaking event next week, which we are excited about. And, there is the potentially the Kansas City Star is going to reprint my story, MY THIRD LUNG, in full either sometime this weekend or next. I will keep you posted on all of that.
Thanks for your suppport and for reading the blog, but the most important thing to me is that you learn from my experience. I have never short-cutted a treatment or a procedure and have been swift and thorough in my decisions regarding my medical team. Yet, I still live with cancer...I get to LIVE with it, not die with it...because I chose to advocate for myself.
In some ways, I feel silly because my face is becoming known with breast cancer and this disease, but I put that aside because I want you to understand that your health comes first. You come first in your pursuit of optimal health and there is no time like the present to get a move on this goal!
Blessings,
Lolo
Anyway, I got some great sleep and woke up at like 5:30! I am feeling a lot better today from the antibiotic my doctor gave me. It seems to manage the fever pretty well. I am sure I have some unnamed infection of irrelevance, but it does not matter. When it impairs daily life, that is when I want to have it treated.
A couple of weeks ago, I was on the news here in KC. I know most of you know this. I am not trying to brag as I am not really sure why I am getting all of this attention right now. I won a breast cancer advocate award and was also in a fashion show. So crazy.
In between those times when I was involved with these events, Michael and I have been re-routing our schedule to go to Jeff City and therefore re-routing the kid's schedules. September and October have been wild months...not bad months, just busy. November will be a month to recuperate.
I am telling you all of this because I want you to understand that my fighting my cancer is still and will always be a job to me. I take it on with professionalism and candor like I would a real job. I have spent two hours this morning researching drugs to discuss with my oncologist. I am not sure which way he wants to go so I am just preparing myself.
Though the attention has been kind and I am truly thankful for it, I am also humbled by it. You see, for some reason, I get to be the messenger in this whole crazy story. Little old me. I get to find purpose throug my situation and I truly get to help other people. I am a caregiver, at heart, so I love to give.
I am working on balance in this regard, but I think my priorities are more in check than ever before and it is exciting. I am continually humbled by all the flaws I have. If I continue to feel better this weekend, then my family and I will feverishly work on preparing the Pass It On! mailing to get out the last week in October.
Tina and I also have one speaking event next week, which we are excited about. And, there is the potentially the Kansas City Star is going to reprint my story, MY THIRD LUNG, in full either sometime this weekend or next. I will keep you posted on all of that.
Thanks for your suppport and for reading the blog, but the most important thing to me is that you learn from my experience. I have never short-cutted a treatment or a procedure and have been swift and thorough in my decisions regarding my medical team. Yet, I still live with cancer...I get to LIVE with it, not die with it...because I chose to advocate for myself.
In some ways, I feel silly because my face is becoming known with breast cancer and this disease, but I put that aside because I want you to understand that your health comes first. You come first in your pursuit of optimal health and there is no time like the present to get a move on this goal!
Blessings,
Lolo
Wednesday, October 15, 2008
New medicines on the horizon...
So, Michael and I found out yesterday that regardless of all the hoops we have been jumping through to get on this clinical trial, the drug company decided to say "no" to us. At this point, we are just glad to move forward and have a definitive answer from them.
I guess the main thing to tell you all is that although this drug may have been a good drug, it is not my only option. There are many options for me. Sometimes people get really confused about my situation because I am stage IV and/or chronic, they always perceive the worst case scenario if something falls through.
The truth with this drug is that it may be really good, but it is not good timing for me. It seemed as if I would meet one criteria, then the drug company would have some other criteria I missed. At some point, you just have to view it that the timing is off and move forward with other drugs that are manageable and doable.
So, our plan is to go to our trusty team at KU tomorrow and talk to them about next steps. Fortunately, breast cancer drugs are continually evolving so I am not sure what to expect from the meeting tomorrow. I know it will be good and I know that I will be happy to be on a new drug, but I don't really care what side effects there are. (After all I have been through recently, the meds KU puts me on may be a cake walk.:)
Let's say it makes me not continue to grow my hair back in...so what? I have lost my hair three times now and I have learned it doesn't really matter. It just isn't as important to me as it is living a pure and good life...plus, my friend, Tina, is opening her wig boutique and she will always keep me in fun wigs, if need be.
Though the last month or so has not been easy with the stint surgeries and the liver detox, it is ironic that my liver will probably be better positioned than ever to take on whatever drugs come my way.
I know I am a cheerleader and I will always see the silver lining in my story, but that is just who I am and how God made me. There is no way for me to really know all the reason why Michael and I were going to Jeff City and meeting new people. Hopefully, I was able to spread a little hope there, just like I try to spread here.
Regardless, I have still been a little under the weather from this detox. I am off the actual medicine, but am tapering off of some other drugs, which has made my past couple of days crazy. Then, I got a fever today so Jack and I have spent some much-needed rest time at my mom and dad's. However, I just wanted to update you all regarding our status.
Morgan turns 8 on Friday so we have a slumber party planned. Yikes! So much fun to be had, but for now I must rest up! More on breast cancer awareness events to follow in another post...
Blessings to each of you!
Lolo
I guess the main thing to tell you all is that although this drug may have been a good drug, it is not my only option. There are many options for me. Sometimes people get really confused about my situation because I am stage IV and/or chronic, they always perceive the worst case scenario if something falls through.
The truth with this drug is that it may be really good, but it is not good timing for me. It seemed as if I would meet one criteria, then the drug company would have some other criteria I missed. At some point, you just have to view it that the timing is off and move forward with other drugs that are manageable and doable.
So, our plan is to go to our trusty team at KU tomorrow and talk to them about next steps. Fortunately, breast cancer drugs are continually evolving so I am not sure what to expect from the meeting tomorrow. I know it will be good and I know that I will be happy to be on a new drug, but I don't really care what side effects there are. (After all I have been through recently, the meds KU puts me on may be a cake walk.:)
Let's say it makes me not continue to grow my hair back in...so what? I have lost my hair three times now and I have learned it doesn't really matter. It just isn't as important to me as it is living a pure and good life...plus, my friend, Tina, is opening her wig boutique and she will always keep me in fun wigs, if need be.
Though the last month or so has not been easy with the stint surgeries and the liver detox, it is ironic that my liver will probably be better positioned than ever to take on whatever drugs come my way.
I know I am a cheerleader and I will always see the silver lining in my story, but that is just who I am and how God made me. There is no way for me to really know all the reason why Michael and I were going to Jeff City and meeting new people. Hopefully, I was able to spread a little hope there, just like I try to spread here.
Regardless, I have still been a little under the weather from this detox. I am off the actual medicine, but am tapering off of some other drugs, which has made my past couple of days crazy. Then, I got a fever today so Jack and I have spent some much-needed rest time at my mom and dad's. However, I just wanted to update you all regarding our status.
Morgan turns 8 on Friday so we have a slumber party planned. Yikes! So much fun to be had, but for now I must rest up! More on breast cancer awareness events to follow in another post...
Blessings to each of you!
Lolo
Sunday, October 12, 2008
Two new posts below...
Still could not get pictures to upload from the Haute Market fashion show. I will keep working on that. For now, check out the new posts below.
Blessings,
Lolo
Blessings,
Lolo
A little under the weather...
So, this liver detox that my doctors are having me do has made this weekend a little unruly for me. I was not sure what to expect, which was probably my first mistake. The dosage is pretty regimented, along with my other medicines, so it has not been an easy couple of days.
Essentially, with a liver detox, you have to take any other medicines an hour before you take the detox. The detox, itself, is a powder that you mix in with a juice. It is highly acidic tasting, which does not bode well with me. Regardless, I am tough, so I took all four doses the first day and all four doses yesterday.
Last night was pretty rough, but I made it through...then I got physically sick this morning. So, that made for some FUN. Fortunately, Michael and I just figured out that this is, once again, one of those times that I need to take a time out from society for a couple of days. I still have to take the meds on Monday and Tuesday. My dose is reduced to 2 per day, which is nice.
I slept a lot today, at my mom and dads. Morgan was flying in from San Francisco with my mother-in-law and nephew so I knew she was taken care of...and Michael and Jack spent the day together. All I really care about on days like these when I have to take a "time-out" is that my husband and kids are happy. I want this all to be seamless to them, so they know I am strong.
Just a reminder, the purpose of the detox is to get residue toxins from the chemo out of my liver so that I can start all over when we start this new medicine. All of these efforts have been to heal my liver...they have been gutsy efforts that included two stint surgeries and some detox medicine. However, who am I if not a risk-taker.
Sometimes, I have to accept the short-term loss of having my weekend plans disappointed by being sick...so that I can grasp onto the long-term plan of healing. This is our goal. My goal, Michael's goal, Morgan's, Jack's and all my extended family and friend's.
Thanks for your continued support. Don't be surprised if I am quiet over the next couple of days. Imagine me sleeping this detox off. My kids are all taken care of and I will be too...so send positive thoughts my way and prayers! Because they matter!
Blessings,
Lolo
Essentially, with a liver detox, you have to take any other medicines an hour before you take the detox. The detox, itself, is a powder that you mix in with a juice. It is highly acidic tasting, which does not bode well with me. Regardless, I am tough, so I took all four doses the first day and all four doses yesterday.
Last night was pretty rough, but I made it through...then I got physically sick this morning. So, that made for some FUN. Fortunately, Michael and I just figured out that this is, once again, one of those times that I need to take a time out from society for a couple of days. I still have to take the meds on Monday and Tuesday. My dose is reduced to 2 per day, which is nice.
I slept a lot today, at my mom and dads. Morgan was flying in from San Francisco with my mother-in-law and nephew so I knew she was taken care of...and Michael and Jack spent the day together. All I really care about on days like these when I have to take a "time-out" is that my husband and kids are happy. I want this all to be seamless to them, so they know I am strong.
Just a reminder, the purpose of the detox is to get residue toxins from the chemo out of my liver so that I can start all over when we start this new medicine. All of these efforts have been to heal my liver...they have been gutsy efforts that included two stint surgeries and some detox medicine. However, who am I if not a risk-taker.
Sometimes, I have to accept the short-term loss of having my weekend plans disappointed by being sick...so that I can grasp onto the long-term plan of healing. This is our goal. My goal, Michael's goal, Morgan's, Jack's and all my extended family and friend's.
Thanks for your continued support. Don't be surprised if I am quiet over the next couple of days. Imagine me sleeping this detox off. My kids are all taken care of and I will be too...so send positive thoughts my way and prayers! Because they matter!
Blessings,
Lolo
Why Pink/Haute Market Fashion Show
The fashion show was so fun. I am having trouble uploading the picture tonight, but wanted to go ahead and let you all know how much fun it was. Jennifer Hermon, the owner of Haute Market, was so sweet to me. There were 23 different models in the show and she put me last...as the finale. She also figured out that my song is "Fighter" By Christina Aquilera and played the song while I was on the runway. She wouldn't let Michael see me until I came out on stage. It was really cute to see his face when he saw me...I was all dolled up. Not the typical tomboy look or me.
They put me in a really fun outfit. Most of the models were just regular girls, like me. I was the only breast cancer survivor, though. It was kind of interesting when the girls figured out that I was a survivor. One of them asked me how long I had been cancer- free. I kind of hesitated, but then told her that I wasn't cancer-free. That I was "chronic". It took her off-guard, but I just explained that this is how life is for me.
It is not easy...always being the girl the educate others about breast cancer, yet I guess there are worse things that I could have to do. The event was so wonderful and Jennifer was such a lovely and thoughtful host to me. I truly feel honored to have been a part of the show. My good friend, Tina, was there and we were at the WHY PINK table with Trevor and Amy Goodwin, who are doing a lot of good in the name of breast cancer. Tina is in the process of opening her wig boutique. I will write more about that in the future, but you can check her out at imwiggedout.com. She is someone who can make a girl feel pretty about having to get a wig...she has a gift for things like that so I am really excited to see how her wig boutique evolves into a ministry to help other women. That is all she wants...or I want, really. We don't want women to feel alone or isolated with this disease. It is too scary to have to deal with it anyway...let alone, the emotional isolation that can take place once diagnosed. It is so exciting to see other young survivors and non-survivors doing good to help the cause.
Thank you Haute Market, Why Pink and WiggedOut for letting me have some fun and for providing a venue for Pass It On to reach more women!
Blessings,
Lolo
They put me in a really fun outfit. Most of the models were just regular girls, like me. I was the only breast cancer survivor, though. It was kind of interesting when the girls figured out that I was a survivor. One of them asked me how long I had been cancer- free. I kind of hesitated, but then told her that I wasn't cancer-free. That I was "chronic". It took her off-guard, but I just explained that this is how life is for me.
It is not easy...always being the girl the educate others about breast cancer, yet I guess there are worse things that I could have to do. The event was so wonderful and Jennifer was such a lovely and thoughtful host to me. I truly feel honored to have been a part of the show. My good friend, Tina, was there and we were at the WHY PINK table with Trevor and Amy Goodwin, who are doing a lot of good in the name of breast cancer. Tina is in the process of opening her wig boutique. I will write more about that in the future, but you can check her out at imwiggedout.com. She is someone who can make a girl feel pretty about having to get a wig...she has a gift for things like that so I am really excited to see how her wig boutique evolves into a ministry to help other women. That is all she wants...or I want, really. We don't want women to feel alone or isolated with this disease. It is too scary to have to deal with it anyway...let alone, the emotional isolation that can take place once diagnosed. It is so exciting to see other young survivors and non-survivors doing good to help the cause.
Thank you Haute Market, Why Pink and WiggedOut for letting me have some fun and for providing a venue for Pass It On to reach more women!
Blessings,
Lolo
Thursday, October 9, 2008
CHECK OUT the new links!
Check out the Pass It On! campaign picture to the right. You can click on the picture to get to the Pass It On website. It is still under construction through October, but you can email me awareness requests and/or questions there.
Also, to learn more about my survivor friend, Tina Herold, check out the links to her web site. She is a mover and a shaker, too! She rocks! We are currently booking speaking events together and outlining a book idea! Got a lot of fun things happening. She was in the Kansas City Star this week for winning a writing contest with Ribbon Chick. And, she is opening up a wig boutique that would provide an intimate and loving setting for girls like us, who had to lose their hair and were petrified that it was going to happen. Please read to learn more about her! She is amazing!
Hit the link to mypinkplanner.com. They are featuring my survivor story this month. This is a great resource for survivors to create a planner that will help other people help them! Dolores Quinn Kitchin is the survivor who started this web site. So exciting what these savvy breast cancer survivors do to learn from their experiences and help others. I am proud to be among them.
Oh, there are two new posts by me, below!
Blessings,
Lolo
Also, to learn more about my survivor friend, Tina Herold, check out the links to her web site. She is a mover and a shaker, too! She rocks! We are currently booking speaking events together and outlining a book idea! Got a lot of fun things happening. She was in the Kansas City Star this week for winning a writing contest with Ribbon Chick. And, she is opening up a wig boutique that would provide an intimate and loving setting for girls like us, who had to lose their hair and were petrified that it was going to happen. Please read to learn more about her! She is amazing!
Hit the link to mypinkplanner.com. They are featuring my survivor story this month. This is a great resource for survivors to create a planner that will help other people help them! Dolores Quinn Kitchin is the survivor who started this web site. So exciting what these savvy breast cancer survivors do to learn from their experiences and help others. I am proud to be among them.
Oh, there are two new posts by me, below!
Blessings,
Lolo
Relaxing into the journey...
It looks like my liver is continuing to heal...a total miracle. It is just one of many. I tell my husband I am on my fourth life now, but I am thankful to be here and to be healing. My faith in God and in my body sustains me more than I ever really talk about on the blog. I never want to appear preachy to any of you, but I know it is alright to remind you of my core strength every so often. Also, the faith that all of YOU have in me does me good as well.
I have put on about 4 lbs, which is great. That means my body is metabolizing food appropriately through the liver since the stint surgery. My energy is slowly returning. Because I am on steroids right now, my energy is affected by that drug. The doctors are using the steroids to reduce inflammation on the liver in the short term. Yet I am really sensitive to medicines and Decadron, the steroid, can cause sleep issues and sort of keep your engine revved up all day. I don't know how anyone could take steroids consistently without becoming a mean person because it definitely has made me jumpy. Roid Rage, huh?
Anyway, I keep my irritability in line, but it is kind of funny. I have snapped a couple of times, but Michael and I just laugh about it and I apologize immediately. What else? As far as medicines, both of my oncologists feel great about my liver healing. They submitted my information to the medical trial we are trying to get into and the drug company wants one of my liver counts to come in line before they let me on the trial. To them, I am just a number. To me, I am a person. (Keep in mind that ALL OF MY OTHER NUMBERS are great. This includes bilirubin, which represents that my liver function is doing great!)
So, we talked to our medical team here at KU and the team at Jeff City. Michael and I were ready to cut our losses and just do another medicine. I was beginning to think that we were trying to fit my "square" liver counts into a "round" whole...so to speak. So, the Jeff City oncologist had a great idea that Michael and I evaluated with our team here. The idea is to have me do this drug that would flush my liver of all of these medicines....kind of like a liver detox....over the next five days.
I have been wanting to do a detox for a while, but haven't because I did not want to mess with the effect of the drug fighting against my cancer. However, now it is kind of like I am getting what I want. Funny. Here is why they are thinking this could work to lower my enzyme count. Liver enzymes can sometimes be high due to toxicity from drugs. So, in theory, all of these meds that we have pumped through my body for the past four years could have a residue effect in the liver. This would cause my liver to work harder to create enzymes to process food and function and increase the enzyme count. If we take that "toxic burden" off of the liver, my counts should be more pure. They should lower.
So, we are going to start that process today. But, I would like to encourage of you not to worry. I am not worried. I am viewing myself in the journey, I am relaxing into it. This process is also part of my healing. Though I am not on a hard chemo right now, we are helping my liver purge some of the bad stuff from my body so that we can move forward and fight some more. I still think this drug is the right drug for me, however, I am open to anything if we need to switch back to another drug...I will. No one promised me that the journey back to health would be easy, in fact, no one promised me that we would have gotten this far. Yet, I continue to feel confident in my medical team, in my body, in our treatment plan, etc.
I have thoroughly interviewed and evaluated both of my medical teams and they are smart oncologists who have my best interest at heart. I constantly maintain that I am lead of my medical team, though my husband Michael could not represent me any better than anyone else in the world. I am blessed!
Okay, friends, have a kick-butt day!
Blessings,
Lolo
Wednesday, October 8, 2008
I am going to be a model in the Haute Market fashion show....so fun!
Tomorrow night, I will to walk down the runway at the Haute Market fashion show. The Why Pink photography team of Trevor and Amy Goodwin have connected with Haute Market and because of the amazing picture Amy took of me (to the right), I was asked to be a model in the show. I will be representing the sisterhood of survivors! So exciting.
I will blog about this event after it is over. I will have Pass It On! packets there and my friend Tina, check her out at imwiggedout.com, is going to be there, too. We are both featured in the Pass It On! mailing this year with one of the Why Pink photos.
So much going on...so many connections. It is exciting to see some fun things come from this breast cancer experience. I am a little shy about walking down the runway, but I will WORK IT and have some fun! Why not, it certainly has been an arduous summer. I think I am ready for some FUN!
Michael and my family will be there. Can't wait to see their reaction to me all-dolled up! My friend, Phil, will be taking video so I will have some footage to share, too.
HIT THE TITLE TO THIS POST AND IT WILL TAKE YOU TO THE HAUTE MARKET LINK! Jennifer Hermon, the owner, is one cool mom...coordinating fashion for us regular girls. I am excited to be at and see what the event is about. I am sure I will be going to the fashion shows from here on out...I will be hooked!
Blessings,
Lolo
I will blog about this event after it is over. I will have Pass It On! packets there and my friend Tina, check her out at imwiggedout.com, is going to be there, too. We are both featured in the Pass It On! mailing this year with one of the Why Pink photos.
So much going on...so many connections. It is exciting to see some fun things come from this breast cancer experience. I am a little shy about walking down the runway, but I will WORK IT and have some fun! Why not, it certainly has been an arduous summer. I think I am ready for some FUN!
Michael and my family will be there. Can't wait to see their reaction to me all-dolled up! My friend, Phil, will be taking video so I will have some footage to share, too.
HIT THE TITLE TO THIS POST AND IT WILL TAKE YOU TO THE HAUTE MARKET LINK! Jennifer Hermon, the owner, is one cool mom...coordinating fashion for us regular girls. I am excited to be at and see what the event is about. I am sure I will be going to the fashion shows from here on out...I will be hooked!
Blessings,
Lolo
Tuesday, October 7, 2008
Fierce!
I went to Target today and bought a bunch of Pink and Purple things... to celebrate breast cancer in my own way. I try to stick to the hot pinks and purples as those work better for me, but powder pink can be fun, too. Anyway, I asked Morgan to pose with me because she is beautiful and I love her. Plus, I know you all like to see pictures of me every once in a while to know that I am healthy and okay. I am. I am really good. Here is our fierce pose...
We are going to get on a new medicine this week. Not sure which one yet. Genentech is considering my case now for the trial. If that doesn't work, we will just get on another medicine this week and keep plowing forward. Michael and I are exhausted from driving back and forth to Jeff City so much, but we know that both of the medicine options would be good for us. If I don't get in the trial in Jeff City, we will just get in when KU gets the trial. I will keep you all posted and explain the medical options once I know more over the next couple of days.
For now, I am trying to celebrate breast cancer awareness every day. I am working on embracing the sisterhood of survivorship and feeling STRONG about my fight. I am one of many and I should be proud of it and celebrate that. So, I work on that...each and every day. I am wearing pink every day and we are feverishly working on our Pass It On! awareness packets to get them out over the next month. They are coming together so nicely. I am really happy with how professional they look this year. My goal is to demystify the fears of young women so that they will do self-exams monthly. That is all I want people to learn from my story.
I know most women will not have to go through all that I have in order to maintain optimal health. I am HAPPY for that. I don't want you all to have to have a mastectomy, reconstruction, liver surgery, lung surgery and chemo, chemo, chemo! I am not bitter, never have been. It is just not part of my make-up. All I want to do is share a positive message so that if any of you have to face down this disease, you can do it with strength and tenacity. Just like I try to do.
THIS WEEK...I get to model in a fashion show for breast cancer awareness! How cool is that? It will be Thursday night at the Haute Market event. I am really excited and will blog about that experience after it is over. Google Haute Market if you want to know more. I will have Pass It On! packets there and my friend, Tina, is going to be there too. I will post a link to her web site so you can learn more about her and her new wig boutique!
Blessings to each of you on this chilly Fall day! Be fierce!
Lolo
Saturday, October 4, 2008
Friday, October 3, 2008
What is Pass It On!
Since my web site is not fully up and running, I wanted to go ahead and explain the purpose of Pass It On! for you all. (Yes, it is Pass It On! with an exclamation point, because it requires action from the recipient.) The web site will be interactive by the end of the year, but what is more important to me right now is that I get you and anyone else relevant breast health information.
So, here is the Pass It On story! Because I found my own cancer when I was 32, I decided to start a grass-roots mailing effort in order to become the liaison between the medical community and real women everywhere. The purpose is NOT to spread fear as the likelihood of young women getting breast cancer is miniscule (0.4% to be exact, facts provided by breastcancer.org.)
I was walking around during one of my chemo sessions at KU MedWest when I saw these wonderful self-exam cards that the Susan G. Komen foundation created. The cards are thoughtful because you can put them on the shower and you can punch out the month once you are done. A no-brainer. However, I didn't want the cards to be at the cancer center anymore, I wanted them to be in the hands of all the women I know and love.
The name Pass It On! came about because I share a packet of information with each recipient and then I ask them, if they are comfortable, to pass a packet on to a friend. This year's mailing will include a portfolio binder with a marketing document with my personal story, a breast self exam card, a mammogram information sheet and general breast health flyer. The recipient's packet will be on the left, with the packet for a friend on the right. (The marketing document is totally FUN, has lots of pix of the kids and family.)
All medical documentation is provided through Komen. Pass It On! recently obtained a grant through Komen-KC. Before this grant, the funding for the mailing was provided through Michael and me and our extended family. However, I wanted to expand the program so that we could reach more people.
The Greater Kansas City Community Foundation has helped us with that. So has Komen of Greater Kansas City. I always evaluate thoughtful ways in which I can help women add screenings into their busy lives. We will add surveys to the program this year so I can see how things are going and how we need to evolve.
My story has been the one that we have shared over time. However, I want to provide a mechanism to share stories of other survivors. I love to write and love marketing. It comes naturally to me, but I want to find a way for other survivors to find meaning by sharing their stories, if and when they are ready. So, going forward, it will not be all about me. It will be about survivors, at any age.
The target audience for the mailing began as an effort to reach women under 40. But, the truth is that self-exams are relevant for women AT ANY AGE. Mammograms are available to everyone at the age of 40, but my thinking is this...if you perform monthly exams on your own, then you will identify the importance of scheduling mammograms and annual exams. They are all vital tools to maintain breast health. Monthly exams fill in the gap where mammograms and annual exams can't. I want to empower women to know that they are qualified to perform these exams.
As moms, wives, girlfriends, sisters, daughters...we have so many responsibilities and we tend to put our health last. Pass It On! is just a way for me to challenge women, in a delicate fashion, to consider putting their health first. Your health matters, YOU matter!
We do perform speaking events and distribute packets to schools, churches, hospitals, etc. However, if you would like to personally be added to Pass It On!, just email me at laura@passitonusa.org. You can do the same if you want to have a speaking event scheduled and/or want packets distributed to a specific organization.
Please know my goal is never to intrude or create fear. I want to mail to a willing audience and/or present to a willing audience. Otherwise, the message may not be heard. I know I have a unique situation with being a stage IV breast cancer survivor and having been stage IV from the beginning, but that is why I care about this message. I feel a burden to share...almost feel as though it would be irresponsible not to share this information.
I absolutely want a cure for this disease so that none of you have to go through what I have gone through. However, in the meantime, early detection makes the difference in saving lives. It is critical to streamlining treatment and positively affecting prognosis. Please consider adding yourself to the Pass It On! mailing.
With love,
Lolo
So, here is the Pass It On story! Because I found my own cancer when I was 32, I decided to start a grass-roots mailing effort in order to become the liaison between the medical community and real women everywhere. The purpose is NOT to spread fear as the likelihood of young women getting breast cancer is miniscule (0.4% to be exact, facts provided by breastcancer.org.)
I was walking around during one of my chemo sessions at KU MedWest when I saw these wonderful self-exam cards that the Susan G. Komen foundation created. The cards are thoughtful because you can put them on the shower and you can punch out the month once you are done. A no-brainer. However, I didn't want the cards to be at the cancer center anymore, I wanted them to be in the hands of all the women I know and love.
The name Pass It On! came about because I share a packet of information with each recipient and then I ask them, if they are comfortable, to pass a packet on to a friend. This year's mailing will include a portfolio binder with a marketing document with my personal story, a breast self exam card, a mammogram information sheet and general breast health flyer. The recipient's packet will be on the left, with the packet for a friend on the right. (The marketing document is totally FUN, has lots of pix of the kids and family.)
All medical documentation is provided through Komen. Pass It On! recently obtained a grant through Komen-KC. Before this grant, the funding for the mailing was provided through Michael and me and our extended family. However, I wanted to expand the program so that we could reach more people.
The Greater Kansas City Community Foundation has helped us with that. So has Komen of Greater Kansas City. I always evaluate thoughtful ways in which I can help women add screenings into their busy lives. We will add surveys to the program this year so I can see how things are going and how we need to evolve.
My story has been the one that we have shared over time. However, I want to provide a mechanism to share stories of other survivors. I love to write and love marketing. It comes naturally to me, but I want to find a way for other survivors to find meaning by sharing their stories, if and when they are ready. So, going forward, it will not be all about me. It will be about survivors, at any age.
The target audience for the mailing began as an effort to reach women under 40. But, the truth is that self-exams are relevant for women AT ANY AGE. Mammograms are available to everyone at the age of 40, but my thinking is this...if you perform monthly exams on your own, then you will identify the importance of scheduling mammograms and annual exams. They are all vital tools to maintain breast health. Monthly exams fill in the gap where mammograms and annual exams can't. I want to empower women to know that they are qualified to perform these exams.
As moms, wives, girlfriends, sisters, daughters...we have so many responsibilities and we tend to put our health last. Pass It On! is just a way for me to challenge women, in a delicate fashion, to consider putting their health first. Your health matters, YOU matter!
We do perform speaking events and distribute packets to schools, churches, hospitals, etc. However, if you would like to personally be added to Pass It On!, just email me at laura@passitonusa.org. You can do the same if you want to have a speaking event scheduled and/or want packets distributed to a specific organization.
Please know my goal is never to intrude or create fear. I want to mail to a willing audience and/or present to a willing audience. Otherwise, the message may not be heard. I know I have a unique situation with being a stage IV breast cancer survivor and having been stage IV from the beginning, but that is why I care about this message. I feel a burden to share...almost feel as though it would be irresponsible not to share this information.
I absolutely want a cure for this disease so that none of you have to go through what I have gone through. However, in the meantime, early detection makes the difference in saving lives. It is critical to streamlining treatment and positively affecting prognosis. Please consider adding yourself to the Pass It On! mailing.
With love,
Lolo
OP Woman Featured in Redbook
Click on the title this post and it will link you to the Channel 9 story! Kelly Eckerman did such a great job of conveying my story while not overwhelming the audience with too much information. I am totally grateful to her and her team for being so professional. I will permanently add the video to the blog at some point. However, wanted to add this link for those of you who were not able to see it last night.
Thanks for all of your support!
Lolo
Thanks for all of your support!
Lolo
Thursday, October 2, 2008
Web site is UP!
Click the title to this post and it will take you to the new web site. It just has the basics up for now, but we wanted people to be able to email me at the web site in case they have speaking requests and/or new people to add to the mailing. Michael and I have a friend, Ryan, who has donated his time to help us get the site up and running. We totally appreciate him for this effort. I think you will see over time that he does a really great job!
The picture, on the site, was also taken by a friend of ours, Phil. He donated his time and photography skills to the campaign this year. So kind and generous. He is also going to help me create a documentary as he has a background in video work. I figure this clinical trial I am on could change the world. Why not document it to help other people see what doing treatment, scans and medical appointments is all about
Thanks to Ryan and Phil for all of their help!
Lolo
The picture, on the site, was also taken by a friend of ours, Phil. He donated his time and photography skills to the campaign this year. So kind and generous. He is also going to help me create a documentary as he has a background in video work. I figure this clinical trial I am on could change the world. Why not document it to help other people see what doing treatment, scans and medical appointments is all about
Thanks to Ryan and Phil for all of their help!
Lolo
Wednesday, October 1, 2008
Interview with Kelly Eckerman.
Last week, Kelly Eckerman and a camera man (named Allen) came to our house and interviewed me regarding the Redbook magazine article and associated Cup of Comfort for Breast Cancer Survivors book. Michael, Morgan and Jack were all there and they got lots of footage of all of us.
The interview will air Thursday night at 5pm on KMBC - Channel 9. It was such a cool experience. I will cringe when I watch it, or watch it with one eye open. The purpose is to spread awareness and a message of hope...so I will watch. Just thought I would give you all a head's up!
Lolo
Breast Cancer Awareness Month and Pass It On!
Things to think about: Pass It On, my foundation, is going to be at the Haute Market fashion show on October 9th at the Ritz-Charles. I think I am going to be modeling in it....YIKES! Anyway, it is an event that costs $10 per person, but the proceeds go to help with breast cancer awarness. WHY PINK, the wonderful photography team of Trevor and Amy Goodwin, have helped to coordinate this event. It should be fun and fabulous. I would love to see any and all of you there!
Trevor and Amy were featured on WDAF-TV this morning and had photos from their campaign on the show. Once the video portion is available via the web, I will link you to it! Very exciting to see good people who are doing great things getting exposure!
Also, I was interviewed by Kelly Eckerman from Channel 9 last week regarding the Redbook magazine article and A Cup of Comfort for Breast Cancer Survivors. She will give me a head's up regarding when the interview will air, but it was very exciting. Morgan and Jack were home from school and Michael was there too. It was great to be able to share my story and my passion to help others. It is a great joy, to me, to be able to live out my passion and help others learn through my situation.
Thanks to each of you for following the blog and putting up with my preachy health advice! I just have to share! I will keep you posted regarding other breast cancer events that will unfold over the next month!
Remember, my mailing is going out soon so please send me your address at loloplunkett@gmail.com if you want to be added to the list. Our website is under construction at www.passitonusa.org, but eventually you will be able to email me there.
Have a wonderful day!
Lolo
Trevor and Amy were featured on WDAF-TV this morning and had photos from their campaign on the show. Once the video portion is available via the web, I will link you to it! Very exciting to see good people who are doing great things getting exposure!
Also, I was interviewed by Kelly Eckerman from Channel 9 last week regarding the Redbook magazine article and A Cup of Comfort for Breast Cancer Survivors. She will give me a head's up regarding when the interview will air, but it was very exciting. Morgan and Jack were home from school and Michael was there too. It was great to be able to share my story and my passion to help others. It is a great joy, to me, to be able to live out my passion and help others learn through my situation.
Thanks to each of you for following the blog and putting up with my preachy health advice! I just have to share! I will keep you posted regarding other breast cancer events that will unfold over the next month!
Remember, my mailing is going out soon so please send me your address at loloplunkett@gmail.com if you want to be added to the list. Our website is under construction at www.passitonusa.org, but eventually you will be able to email me there.
Have a wonderful day!
Lolo
Clinical trial status...
Hi friends, Michael and I went to Jefferson City yesterday and got my blood counts. It looks like all my counts are coming in line for this trial. It is such a miracle, but I know we are on the right path. My poor liver has been through a lot, but let's remember that the liver is resilient. It actually has stem cell functionality and can regenerate! Crazy.
Anyway, because they did most of my scans a little over two weeks ago, they have had to redo a couple of scans. This is just because the clinical trial is so stringent and everything must be within two weeks of admission into the trial. So, yesterday, Michael and I spent the bulk of the day in Jeff City getting a bone scan. The bone scan involves getting an injection and then having to wait for two hours for the scan. Then, I must tell you it is the most boring scan EVER! I had to lay still for over an hour and it is so hard for me to lay still. I am a ball of energy on most days, but I endured the scan and we headed back home.
The only other scan we need to redo is the heart scan. This scan can not be done on the same day as the bone scan because it also involves a radioactive injection. They basically take my blood and put a radioactive dye in and they let it set for about 30 minutes. Then, they put the blood back in me and take pictures of my heart as the blood flows back into my heart. WIld. I have had this scan done several times before and thankfully, my heart always does well for me.
The reason they do the heart scan is because Herceptin, which is one of the drugs on this trial, can be known to be toxic to the heart. So, anyone who has been on this medicine, has to have these scans. Because this trial involves a chemo-charged Herceptin, they need to make sure that my heart can take it. In general, my heart always operates above average in this regard. I am going to be thinking positive thoughts in this regard for Friday. I am not really nervous.
So, once we get this last scan in, they will submit all of my information to Genentech for their review. It is a rigid checklist of a multitude of health criteria, however, I hit most of these marks. These criteria include my general health as well as other drugs that I have already been through. I will keep you all posted, but I am assuming that we will start the medicine next week.
I am hoping that I can document this process via video so that we can put it on the blog and you all can actually 'see" what it is like to have these experiences (the clinics, the trials, etc). My hope is always to demystify the fear of this disease so that each of you will be unafraid to address any health issues you might have. Early detection and awareness do make a critical difference in prognosis and treatment...whether you are dealing with heart disease, cancer, diabetes, arthritis, etc.
Blessings to each of you!
Lolo
Anyway, because they did most of my scans a little over two weeks ago, they have had to redo a couple of scans. This is just because the clinical trial is so stringent and everything must be within two weeks of admission into the trial. So, yesterday, Michael and I spent the bulk of the day in Jeff City getting a bone scan. The bone scan involves getting an injection and then having to wait for two hours for the scan. Then, I must tell you it is the most boring scan EVER! I had to lay still for over an hour and it is so hard for me to lay still. I am a ball of energy on most days, but I endured the scan and we headed back home.
The only other scan we need to redo is the heart scan. This scan can not be done on the same day as the bone scan because it also involves a radioactive injection. They basically take my blood and put a radioactive dye in and they let it set for about 30 minutes. Then, they put the blood back in me and take pictures of my heart as the blood flows back into my heart. WIld. I have had this scan done several times before and thankfully, my heart always does well for me.
The reason they do the heart scan is because Herceptin, which is one of the drugs on this trial, can be known to be toxic to the heart. So, anyone who has been on this medicine, has to have these scans. Because this trial involves a chemo-charged Herceptin, they need to make sure that my heart can take it. In general, my heart always operates above average in this regard. I am going to be thinking positive thoughts in this regard for Friday. I am not really nervous.
So, once we get this last scan in, they will submit all of my information to Genentech for their review. It is a rigid checklist of a multitude of health criteria, however, I hit most of these marks. These criteria include my general health as well as other drugs that I have already been through. I will keep you all posted, but I am assuming that we will start the medicine next week.
I am hoping that I can document this process via video so that we can put it on the blog and you all can actually 'see" what it is like to have these experiences (the clinics, the trials, etc). My hope is always to demystify the fear of this disease so that each of you will be unafraid to address any health issues you might have. Early detection and awareness do make a critical difference in prognosis and treatment...whether you are dealing with heart disease, cancer, diabetes, arthritis, etc.
Blessings to each of you!
Lolo
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