This is Stacie inviting you all to join us on Mother's Day, May 10th, for the Susan G. Komen Race for the Cure. This is an annual event held to raise money for breast cancer research. It is held at The Mall of America in Bloomington, MN. We are doing the 5K walk which begins at 9am. There are other options such as a 5K run at 7:30am or a 1K walk at 9:30am.
Here's the info you'll need:
Go to http://www.komenminnesota.org/site3.aspx and click on "Register Online Now" if you can join us. If you are unable to make it but still would like to donate to Nicole's team, click on the middle icon "Donate Now".
It's important that you sign-up or donate under our team name, Team Nicole (I know, I'm so original)!
The registration cost is $25 and includes a T-shirt. I believe it goes up to $30 after April 18th. Children 12 & under are less.
This link includes more specific event info: http://www.komenminnesota.org/Race/Race_Information.htm
Nicole or I will update with more details on where to meet as the date approaches.
Email me with any questions at bradnstacie@charter.net .
Friday, March 13, 2009
Monday, February 23, 2009
Negative
Just a quick note, with much anticipation today I found out that I am negative for the BRCA gene! My odds are not all that bad after all. The geneticist still insists that my breast cancer is inherited, but not by the BRCA gene. She thinks that with the strong history of colon cancer in my family that I may be positive for a couple of other genes that are related to colon and breast cancer. I will wait for now to do further testing. I'm just happy that I was not positive for this specific gene. With all the tests that I've been positive for in the last 6 months this would have topped it off. Surgeries are still not out the question, as since I was estrogen positive it may be a good idea to get the ovaries removed, but I will leave that up to my oncologist on what he suggests. This will no be no time soon as he wants me in remission for 1 year before considering any surgeries. It's nice to know what my result was for my family and I hope my brother is now happy as he won't be needing to do self breast exams every month. LOL!
Thursday, February 19, 2009
Many rounds of Herceptin to come
Another round of Herceptin under my belt yesterday and I found out from the doctor that I will be on Herceptin for some time. I thought one year is all that I would be on it for, but when I asked him how many patients he has that have been on it longer he said a few and I would be one of them. I will continue with it until it no longer works. Then I will go another type of Herceptin called "Super" Herceptin, which is an oral form. So for now and hopefully a long time as long as its keeping the ugly beast away, I will be going in every 3 weeks for an infusion of Herceptin. As I was waiting in his exam room yesterday I saw a magazine that caught my eye. It was all about stage 4 breast cancer and in there was an article about HER 2 positive and how the tables have turned in the last 10 years about being positive. It was said that if you were HER 2 positive 10 years ago you were more or less DOOMED, but now that is not the case. There is so much research going on in that area. They are looking to eradicate the over expressed HER 2 positive gene in people's bodies with a vaccine and also are looking into why Herceptin becomes resistant to certain patients. Sometimes patients have no response at all to Herceptin. Again I'm so thankful that my treatment is working and I am responding so well. It was very interesting and promising, I'm very HOPEFUL that I will be around a long time.
Speaking of being around a long time, I have a funny story to share. Bryan and I were at the airport getting ready to go on our trip to Mexico, which I received as being Employee of the Year, thanks to all my fellow coworkers, and the security guard at the checkpoint where you get your carry on bags checked asked me who I knew that has (had) breast cancer because I was wearing a hat with a pink ribbon on it. I pointed to myself and he looked at Bryan and said she's going to be around to bug you for a long time and gave me a high five. We all had a good laugh and I do feel sorry for Bryan though. LOL. We had fun on our trip, but missed the boys terribly. This is the longest that we have ever been away from them. It was strange just to take care of ourselves. I think that we both felt a little lost without the boys. Brock said that he missed us very much, but I think that he enjoyed his time with Stacie and Brad and his cousins. I'm sure the Nelson family has the latest version of Charlie and the Chocolate Factory memorized as this is Brock's favorite movie now and we watch it almost everyday. He even acts it out when we are not watching it. He's a little obsessed I have to say. Griffin probably missed us too, but of course could not tell us, I think he was ready to go home and sleep in his own bed. He is crawling everywhere and getting into everything. He is definitely different then Brock ever was. I think that he will be my little risk taker, watch out.
Bryan relaxing on the hammock on our balcony
Our view for 4 days
My little amigo enjoying his souvenirs from MEXICO
Griffin being his happy self
My MUGA scan was good at 66%, I have to be below 50% before I can no longer take Hercepitn., but if that happens my heart will gain back the strength over a little time and I can start the treatment again. I will have another MUGA scan in April and also will have a CT scan that same day. I asked why not a PET scan and he said that a CT scan will show anything that is less then 1 cm unlike a PET scan that won't show anything smaller then 1 cm. And its also very good at getting pictures of the tissues then the PET scan. I 'm always so full of questions when I see him, but I think that he likes it when you are involved in your treatment, he doesn't seem irritated when I am asking them. I am learning so much through all of this. My hemoglobin is slowly going up, I am now in range at 11.9. My tumor marker is at 16.7, I hope that it will go all the way down to one, but of course I never knew what I was at before all this happened, so being 16.7 is in the normal range if its my normal range that I will never know unfortunately.
There was a cancellation at the genetic office, so I will be going in on Monday for my follow up. It's weird that I feel a little nervous, but knowing what the result will be will have an important part in deciding what to have done for surgeries, which I am acting like a baby about. To tell you the truth I would rather go through chemo again then have surgery, call me crazy, but I have never had any surgeries so not sure what to expect. I know no matter what the result will be I will be happy that I did it for my family and kids, so they know what their risk factors are.
I am staying home today with the boys because Brock had a fever last night and early this morning, so hoping that some rest for him will get him better quick, so we can go back to daycare and work tomorrow. Bryan is getting over this bug as well. So far Griffin is healthy and myself as well and hoping it will stay that way.
One last note please keep Karlye and her family in your prayers as her cancer has once again returned. It breaks my heart to see this 6 year old sweet girl go through what nobody should ever have to go through especially at her age. Have I ever mentioned how bad I HATE CANCER!!!!! Her site is www.caringbridge.org/visit/karlyedeutsch . Thanks for all your support.
Speaking of being around a long time, I have a funny story to share. Bryan and I were at the airport getting ready to go on our trip to Mexico, which I received as being Employee of the Year, thanks to all my fellow coworkers, and the security guard at the checkpoint where you get your carry on bags checked asked me who I knew that has (had) breast cancer because I was wearing a hat with a pink ribbon on it. I pointed to myself and he looked at Bryan and said she's going to be around to bug you for a long time and gave me a high five. We all had a good laugh and I do feel sorry for Bryan though. LOL. We had fun on our trip, but missed the boys terribly. This is the longest that we have ever been away from them. It was strange just to take care of ourselves. I think that we both felt a little lost without the boys. Brock said that he missed us very much, but I think that he enjoyed his time with Stacie and Brad and his cousins. I'm sure the Nelson family has the latest version of Charlie and the Chocolate Factory memorized as this is Brock's favorite movie now and we watch it almost everyday. He even acts it out when we are not watching it. He's a little obsessed I have to say. Griffin probably missed us too, but of course could not tell us, I think he was ready to go home and sleep in his own bed. He is crawling everywhere and getting into everything. He is definitely different then Brock ever was. I think that he will be my little risk taker, watch out.
Bryan relaxing on the hammock on our balcony
Our view for 4 days
My little amigo enjoying his souvenirs from MEXICO
Griffin being his happy self
My MUGA scan was good at 66%, I have to be below 50% before I can no longer take Hercepitn., but if that happens my heart will gain back the strength over a little time and I can start the treatment again. I will have another MUGA scan in April and also will have a CT scan that same day. I asked why not a PET scan and he said that a CT scan will show anything that is less then 1 cm unlike a PET scan that won't show anything smaller then 1 cm. And its also very good at getting pictures of the tissues then the PET scan. I 'm always so full of questions when I see him, but I think that he likes it when you are involved in your treatment, he doesn't seem irritated when I am asking them. I am learning so much through all of this. My hemoglobin is slowly going up, I am now in range at 11.9. My tumor marker is at 16.7, I hope that it will go all the way down to one, but of course I never knew what I was at before all this happened, so being 16.7 is in the normal range if its my normal range that I will never know unfortunately.
There was a cancellation at the genetic office, so I will be going in on Monday for my follow up. It's weird that I feel a little nervous, but knowing what the result will be will have an important part in deciding what to have done for surgeries, which I am acting like a baby about. To tell you the truth I would rather go through chemo again then have surgery, call me crazy, but I have never had any surgeries so not sure what to expect. I know no matter what the result will be I will be happy that I did it for my family and kids, so they know what their risk factors are.
I am staying home today with the boys because Brock had a fever last night and early this morning, so hoping that some rest for him will get him better quick, so we can go back to daycare and work tomorrow. Bryan is getting over this bug as well. So far Griffin is healthy and myself as well and hoping it will stay that way.
One last note please keep Karlye and her family in your prayers as her cancer has once again returned. It breaks my heart to see this 6 year old sweet girl go through what nobody should ever have to go through especially at her age. Have I ever mentioned how bad I HATE CANCER!!!!! Her site is www.caringbridge.org/visit/karlyedeutsch . Thanks for all your support.
Tuesday, February 3, 2009
More Book Info
A few people have had trouble printing the order form for the book. Here is the direct link-
http://www.uswaterservices.com/pdfs/Nicole%20Form.pdf
Here is the link to the information page-
http://www.uswaterservices.com/pink%20page.php
Mailing address for form and check-
Karen Danielson
2950 Xenium Lane N, Ste 120
Plymouth, MN 55441
Hope this helps!
http://www.uswaterservices.com/pdfs/Nicole%20Form.pdf
Here is the link to the information page-
http://www.uswaterservices.com/pink%20page.php
Mailing address for form and check-
Karen Danielson
2950 Xenium Lane N, Ste 120
Plymouth, MN 55441
Hope this helps!
Friday, January 30, 2009
HER2+
I had my 8th round of Herceptin on Wednesday. I did not have any side effects last time and so far none this time around either. It's so wonderful to get a drug that doesn't effect you much. It was an easy day on Wednesday, I was in and out of there within 1 1/2 hours. I like those kind of visits, with no labs to draw and no doctor's visit, it makes a difference. Nothing to hold you up and wait for.
I have another MUGA scan on the 11th of February. I have to do these every 3 months to make sure that my heart is staying strong because the Herceptin can cause cardiac dysfunction. Many ask me what does the Herceptin actually do and according to my Nursing drug book that my thoughtful mom purchased for me, it states that it is a recombinant DNA-derived monoclonal antibody that selectively binds to the HER2 proteins, inhibiting proliferation of tumor cells that overexpress HER2. You may ask what is HER2, well all normal breast cells contain copies of the HER2 (Human Epidermal growth factor Receptor 2) gene, which helps normal cells grow. The HER2 gene is found in the DNA of a cell and this gene contains the information for making the HER2 protein. In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens too much HER2 appears on the surface of these cancer cells and are overexpressed. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly, so that is why HER2+ breast cancer is considered aggressive. About 25% of women who are diagnosed with breast cancer are HER2+. So there is your lesson of Herceptin and HER2+ in a nutshell hope that it made sense.
When you think of breast cancer you would think that it is just breast cancer, but breast cancer is so complexed that it's just not categorized as breast cancer when diagnosed. You have hormone receptors that you get tested for and get check to see what your HER2 status is plus with the grade of the tumor and the stage of the cancer, are you lost yet? Anyways not only am I HER2+, but I also am Estrogen and Progesterone positive, which means that couple of weeks ago I started taking the wonderful drug Tamoxifen. It's funny because the other day I was on the YSC discussion board and there was topic posted there "I took my first Tamoxifen" and everyone who responded had the same worries and concerns as I did with it and they all procrastinated a little when they started taking it. Some waited days, like me, some waited months, but we all have the same concerns with the side effects, the major one being HOT FLASHES, welcome to Menopause, oh my. Tamoxifen will now be my friend for 5 years. Luckily I am also taking Effexor, which helps with hot flashes, so that's a plus. And to answer your question Aunt Sandy that you asked me tonight there are different doses of it depending on your treatment that you've had, but it looks like 20mg is the common dose and that's what I'm on.
I was suppose to have my genetic test follow up on the 11th also, but due to my scan I had to cancel. Unfortunately I can not get another appointment until April, so I have my appointment then and I'm also on a cancellation list. I did ask if I could get my result before then, but the receptionist had to give the message to the doctor and I have not heard back yet so have to wait and see.
Posting a couple of pictures of me with the boys. Griffin is getting so big and I'm proud to say that he is now the only one in the house with the least amount of hair, but we are neck and neck. My hair is growing back nicely so far it's my normal color, not blonde. As for the texture I can't really tell yet, but I'm excited to get my hair back and my eyebrows and eyelashes, but of course where I could care less that I have hair or not on my body is coming back as well. As my friend Amy put it too bad it wasn't swimsuit season. LOL.
I have another MUGA scan on the 11th of February. I have to do these every 3 months to make sure that my heart is staying strong because the Herceptin can cause cardiac dysfunction. Many ask me what does the Herceptin actually do and according to my Nursing drug book that my thoughtful mom purchased for me, it states that it is a recombinant DNA-derived monoclonal antibody that selectively binds to the HER2 proteins, inhibiting proliferation of tumor cells that overexpress HER2. You may ask what is HER2, well all normal breast cells contain copies of the HER2 (Human Epidermal growth factor Receptor 2) gene, which helps normal cells grow. The HER2 gene is found in the DNA of a cell and this gene contains the information for making the HER2 protein. In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens too much HER2 appears on the surface of these cancer cells and are overexpressed. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly, so that is why HER2+ breast cancer is considered aggressive. About 25% of women who are diagnosed with breast cancer are HER2+. So there is your lesson of Herceptin and HER2+ in a nutshell hope that it made sense.
When you think of breast cancer you would think that it is just breast cancer, but breast cancer is so complexed that it's just not categorized as breast cancer when diagnosed. You have hormone receptors that you get tested for and get check to see what your HER2 status is plus with the grade of the tumor and the stage of the cancer, are you lost yet? Anyways not only am I HER2+, but I also am Estrogen and Progesterone positive, which means that couple of weeks ago I started taking the wonderful drug Tamoxifen. It's funny because the other day I was on the YSC discussion board and there was topic posted there "I took my first Tamoxifen" and everyone who responded had the same worries and concerns as I did with it and they all procrastinated a little when they started taking it. Some waited days, like me, some waited months, but we all have the same concerns with the side effects, the major one being HOT FLASHES, welcome to Menopause, oh my. Tamoxifen will now be my friend for 5 years. Luckily I am also taking Effexor, which helps with hot flashes, so that's a plus. And to answer your question Aunt Sandy that you asked me tonight there are different doses of it depending on your treatment that you've had, but it looks like 20mg is the common dose and that's what I'm on.
I was suppose to have my genetic test follow up on the 11th also, but due to my scan I had to cancel. Unfortunately I can not get another appointment until April, so I have my appointment then and I'm also on a cancellation list. I did ask if I could get my result before then, but the receptionist had to give the message to the doctor and I have not heard back yet so have to wait and see.
Posting a couple of pictures of me with the boys. Griffin is getting so big and I'm proud to say that he is now the only one in the house with the least amount of hair, but we are neck and neck. My hair is growing back nicely so far it's my normal color, not blonde. As for the texture I can't really tell yet, but I'm excited to get my hair back and my eyebrows and eyelashes, but of course where I could care less that I have hair or not on my body is coming back as well. As my friend Amy put it too bad it wasn't swimsuit season. LOL.
The Healing Power of Pink
It's Stacie again with a quick update. Nicole just updated also so make sure to read the previous entry.
Shortly after Nicole's diagnosis, I was contacted by one of her coworkers named Susan Stein. She wanted to show her support by putting together a book dedicated to Nicole. I personally reviewed the book before it was published and it is beautiful! Susan is a very talented photographer, and she has taken several of her photographs of pink flowers, etc. and combined them with excerpts from this blog.
Al Bly, President of US Water Services, has funded the printing of the book which has allowed all of the proceeds to go directly to Nicole's Benefit Account. More details on the book and the order form are available through the US Water Services website at http://www.uswaterservices.com/pink%20page.php. The cost is $20. The form and check can be mailed to:
Karen Danielson
2950 Xenium Lane N, Ste 120
Plymouth, MN 55441
I know Nicole, like many of us, has a difficult time accepting donations from people. So far, she has been very fortunate that insurance has covered the majority of her medical costs. Even so, she is very grateful for all the support she has been shown. The plan is to keep the money in the benefit account for future use. Nicole is also thinking about doing a breast cancer fundraising walk within the next year and may also use some of the funds towards that cause.
So, a huge thank you to Susan, Al and all the others that made this book happen! I can't wait to get my copy!
Shortly after Nicole's diagnosis, I was contacted by one of her coworkers named Susan Stein. She wanted to show her support by putting together a book dedicated to Nicole. I personally reviewed the book before it was published and it is beautiful! Susan is a very talented photographer, and she has taken several of her photographs of pink flowers, etc. and combined them with excerpts from this blog.
Al Bly, President of US Water Services, has funded the printing of the book which has allowed all of the proceeds to go directly to Nicole's Benefit Account. More details on the book and the order form are available through the US Water Services website at http://www.uswaterservices.com/pink%20page.php. The cost is $20. The form and check can be mailed to:
Karen Danielson
2950 Xenium Lane N, Ste 120
Plymouth, MN 55441
I know Nicole, like many of us, has a difficult time accepting donations from people. So far, she has been very fortunate that insurance has covered the majority of her medical costs. Even so, she is very grateful for all the support she has been shown. The plan is to keep the money in the benefit account for future use. Nicole is also thinking about doing a breast cancer fundraising walk within the next year and may also use some of the funds towards that cause.
So, a huge thank you to Susan, Al and all the others that made this book happen! I can't wait to get my copy!
Saturday, January 10, 2009
It's Not Fair
Time to update, I had my 1st round of the Herceptin only on Wednesday and so far no real known side effects. Here I thought that I would be in and out of there faster than I was, but with my oncologist being gone last week he was very busy seeing double the patients and he got behind, which made my infusion get behind. So I started at 9:30 and did not get out of there until 1:30. The good news is that my next infusion should only last 1 hour total by the time I get checked in and out because I don't have any lab work or an appointment with the doctor. I'm definitely looking forward to that. It is not my favorite thing to do with my free time is to wait around at the cancer center.
My oncologist was very happy with my scan and that everything was still cancer free. I asked him if I was considered to be NED (no evidence of disease)and officially I'm considered NED, which I have been since my scan that I had in October, but I wanted to hear it from the doc. In regards to the inflammation that was seen on the scan he thinks is related to the chemo and if I have any digestive issues that I think are abnormal to let him know and they will perform a test that puts a scope down into my stomach to investigate, not sure what the technical name for it is called sorry to all you medical people. I'm bad with terminology.
I had my bloodwork done and my hemoglobin is still low at 10.8, but rising. There were tears brought to my eyes when I saw my alkaline phosphatase result. Your alkaline phosphatase(ALP) is an enzyme that is in your blood and if it is high it is usually related to a liver or bone disorder. It has been indicated that this test is the most sensitive test to indicate metastatic tumor(s) to the liver. When I first had my blood drawn back in August, my ALP was 219. The normal range for this is 50-136. On Wednesday my ALP was 75, the lowest it has ever been. I was so excited that I couldn't wait to share with everyone. Of course my tumor marker test was much higher and drop tremendously, but the ALP concerned me a lot since it was the test directly related to your liver, that I dwelled on it in the beginning although I have read on some of the discussions boards for some women of it being much higher then my has ever been.
In regards to discussion boards, I have listed on the site a couple of websites that I visit frequently for support. The Young Survival Coalition is one that I visit often and I feel like I know some of these girls without even meeting them face to face. This website has really helped me keep positive and stay strong besides all you of course who read this and leave me comments. There are a number of girls who are stage IV and they have given me alot of HOPE. But at the same time I feel for the ones that their treatments are not working and they struggle and at times some of them pass away leaving behind their children, husbands and other family. It's not fair that young women who may be mothers or wives have to go through this. It's not fair that children have to grow up without their moms. It's not fair that husbands have to be widowed way too young. With all of this said I want everyone to visit this site http://www.caringbridge.org/visit/amytaylor and know that life is way too short and we need to cherish it everyday and thank God that he has given us one more day to spend with our families. Even though I have never met Amy, her story has touched me and she has been taken way too soon from her family and they have been robbed by this horrible disease, but I know someday, SOMEDAY no more families will have to face what her family has faced. I feel fortunate that my treatment has responded so well, but there is that 1% that I fear could this be my family someday. Thanks for letting me vent, I don't express my feelings too much, but felt that I needed to share with everyone what my thoughts have been lately.
On a much happier note to celebrate Bryan's birthday we all went out to eat and bowling tonight and it was FUN by all! I included a couple of pictures to share.
Brock watching his ball go down the lane with the help of dad
In picture is our niece Paige, Bryan, brother-in-law Brad, and nephew Noah
My oncologist was very happy with my scan and that everything was still cancer free. I asked him if I was considered to be NED (no evidence of disease)and officially I'm considered NED, which I have been since my scan that I had in October, but I wanted to hear it from the doc. In regards to the inflammation that was seen on the scan he thinks is related to the chemo and if I have any digestive issues that I think are abnormal to let him know and they will perform a test that puts a scope down into my stomach to investigate, not sure what the technical name for it is called sorry to all you medical people. I'm bad with terminology.
I had my bloodwork done and my hemoglobin is still low at 10.8, but rising. There were tears brought to my eyes when I saw my alkaline phosphatase result. Your alkaline phosphatase(ALP) is an enzyme that is in your blood and if it is high it is usually related to a liver or bone disorder. It has been indicated that this test is the most sensitive test to indicate metastatic tumor(s) to the liver. When I first had my blood drawn back in August, my ALP was 219. The normal range for this is 50-136. On Wednesday my ALP was 75, the lowest it has ever been. I was so excited that I couldn't wait to share with everyone. Of course my tumor marker test was much higher and drop tremendously, but the ALP concerned me a lot since it was the test directly related to your liver, that I dwelled on it in the beginning although I have read on some of the discussions boards for some women of it being much higher then my has ever been.
In regards to discussion boards, I have listed on the site a couple of websites that I visit frequently for support. The Young Survival Coalition is one that I visit often and I feel like I know some of these girls without even meeting them face to face. This website has really helped me keep positive and stay strong besides all you of course who read this and leave me comments. There are a number of girls who are stage IV and they have given me alot of HOPE. But at the same time I feel for the ones that their treatments are not working and they struggle and at times some of them pass away leaving behind their children, husbands and other family. It's not fair that young women who may be mothers or wives have to go through this. It's not fair that children have to grow up without their moms. It's not fair that husbands have to be widowed way too young. With all of this said I want everyone to visit this site http://www.caringbridge.org/visit/amytaylor and know that life is way too short and we need to cherish it everyday and thank God that he has given us one more day to spend with our families. Even though I have never met Amy, her story has touched me and she has been taken way too soon from her family and they have been robbed by this horrible disease, but I know someday, SOMEDAY no more families will have to face what her family has faced. I feel fortunate that my treatment has responded so well, but there is that 1% that I fear could this be my family someday. Thanks for letting me vent, I don't express my feelings too much, but felt that I needed to share with everyone what my thoughts have been lately.
On a much happier note to celebrate Bryan's birthday we all went out to eat and bowling tonight and it was FUN by all! I included a couple of pictures to share.
Brock watching his ball go down the lane with the help of dad
In picture is our niece Paige, Bryan, brother-in-law Brad, and nephew Noah
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