Wednesday, April 15, 2009
All is Good
I received my results back today from my MRI and my ultrasound. My MRI showed that everything was normal except I have a pituitary apoplexy. The definition of this is an infarction or hemorrhage of the pituitary gland in the presence of a pituitary adenoma. This was also on my MRI back in August, but I suppose with everything else that was going on, this was the least of their worries. I am having my thyroid checked to make sure that it is in normal range and I guess we will go from there, but nothing serious. My ultrasound dictation was not all the way complete when she called me about my MRI, but it was noted that it was a cyst on my left ovary. I'm very relived that everything was good. I do have to admit I was a little irritable this morning thinking about my results. I figured everything would be good, but there is that little voice in me that worries. I think that I will always have that no matter what. It's called canceritis. Wondering if an ache is just an ache or a headache is just a headache. At least I have medical technology to keep me at ease.
Wednesday, April 8, 2009
Some Good News
I had to absorbed a lot today at my appointment. As soon as he came into the room, he checked my lymph nodes under my arms and my throat. Usually he sits down and looks at my chart on the computer, so thought something was wrong. The CT scan showed a lymph node under my left arm, that seemed to measure larger then normal. At the size that it measured he would have been able to physically feel it and he felt nothing. He thinks that when they measured the node it was measured a different way then the first time it was measured. I know that this sounds confusing, but he drew a picture of it and it made sense. In conclusion he does not think its cancer.
Then he asked if I had any concerns, which normally I don't have too much in the beginning to ask, but as the conversation goes on, that's when I start piping up. At the discretion of my husband I did let him know that I occasionally have headaches. I have never been a person to get too many headaches and Tylenol seems to help. He then proceeded to ask me other questions if I get nausea when I get headaches and if I have been seeing well, which everything has been fine. He scheduled a MRI on my brain just to make sure. I have not had one since I was first diagnosed, so he thought it would be good to have one done. Better safe then sorry. I know that will put both Bryan and I at ease. This will be on Tuesday along with an ultrasound on my ovaries.
On the CT scan one of my ovaries showed a cyst or something to that nature, so just to make sure that it's not a tumor the ultrasound will help with that. He then asked me if I had my menstrual cycle return and I have. Because of this he ordered a genotype blood test to be done. This will show if the drug tamoxifen, that I'm taking, which is suppose to get rid of the estrogen that your ovaries produce, is working for me. It is not unusual for someone my age to have their ovaries come back after chemotherapy, but that means that they are not shut down and I'm still having estrogen go through my body. This is what fed my cancer initially, so we don't want the estrogen. Regardless if I got my menstrual cycle or not, the tamoxifen is suppose to work the same, but just to make sure I am having this blood test done. I should get that result in a week or so. That will then decide if we need to take additional medications to shut the ovaries down. Lupron is a popular medication that is a shot that is taken by many pre menopausal women. There is also an oral medication, I can't think of it off the top of my head, but that too would shut them completely down. I did not ask about removing them because I know that the answer would be that he wants to wait until I'm in remission for a full year. Just knowing that I am not in full menopause and what may be coming does not thrill me. I'm sure some of you reading this can agree to that. Menopause is no fun, especially at 29 years old, but if it saves my life, it's all worth it.
My MUGA scan was 61%. It has gone down since last time. Because of this, I will do another scan in 6 weeks. Normally it's done every 3 months. He thinks that it will hold stable. We don't want it to get lower then 50%. If that happened I would have to discontinue the Herceptin until my heart got stronger. If this was to happen I would go on an oral medication called "super herceptin" , there's a more technical name, but this would do the same as Herceptin and if not better.
My labs showed that everything was in the normal range. My tumor marker did go up slightly 17.1. I think it was 16.7 last time. Still in normal range.
So in conclusion, everything seems to be going well. We just want to be cautious and get a clearer picture on some items. He also told me that he would be leaving in July, so I will see him one last time before that date. I can choose whomever I want as my doctor. I think I will go with the one that was suggested unless I ask around at my next infusion and see if anyone suggests someone else. There will be someone taking his place, so I could wait and see.
Then he asked if I had any concerns, which normally I don't have too much in the beginning to ask, but as the conversation goes on, that's when I start piping up. At the discretion of my husband I did let him know that I occasionally have headaches. I have never been a person to get too many headaches and Tylenol seems to help. He then proceeded to ask me other questions if I get nausea when I get headaches and if I have been seeing well, which everything has been fine. He scheduled a MRI on my brain just to make sure. I have not had one since I was first diagnosed, so he thought it would be good to have one done. Better safe then sorry. I know that will put both Bryan and I at ease. This will be on Tuesday along with an ultrasound on my ovaries.
On the CT scan one of my ovaries showed a cyst or something to that nature, so just to make sure that it's not a tumor the ultrasound will help with that. He then asked me if I had my menstrual cycle return and I have. Because of this he ordered a genotype blood test to be done. This will show if the drug tamoxifen, that I'm taking, which is suppose to get rid of the estrogen that your ovaries produce, is working for me. It is not unusual for someone my age to have their ovaries come back after chemotherapy, but that means that they are not shut down and I'm still having estrogen go through my body. This is what fed my cancer initially, so we don't want the estrogen. Regardless if I got my menstrual cycle or not, the tamoxifen is suppose to work the same, but just to make sure I am having this blood test done. I should get that result in a week or so. That will then decide if we need to take additional medications to shut the ovaries down. Lupron is a popular medication that is a shot that is taken by many pre menopausal women. There is also an oral medication, I can't think of it off the top of my head, but that too would shut them completely down. I did not ask about removing them because I know that the answer would be that he wants to wait until I'm in remission for a full year. Just knowing that I am not in full menopause and what may be coming does not thrill me. I'm sure some of you reading this can agree to that. Menopause is no fun, especially at 29 years old, but if it saves my life, it's all worth it.
My MUGA scan was 61%. It has gone down since last time. Because of this, I will do another scan in 6 weeks. Normally it's done every 3 months. He thinks that it will hold stable. We don't want it to get lower then 50%. If that happened I would have to discontinue the Herceptin until my heart got stronger. If this was to happen I would go on an oral medication called "super herceptin" , there's a more technical name, but this would do the same as Herceptin and if not better.
My labs showed that everything was in the normal range. My tumor marker did go up slightly 17.1. I think it was 16.7 last time. Still in normal range.
So in conclusion, everything seems to be going well. We just want to be cautious and get a clearer picture on some items. He also told me that he would be leaving in July, so I will see him one last time before that date. I can choose whomever I want as my doctor. I think I will go with the one that was suggested unless I ask around at my next infusion and see if anyone suggests someone else. There will be someone taking his place, so I could wait and see.
Monday, April 6, 2009
Scan Day
A day full of scans. Well actually 2 scans and one lab draw. I had a MUGA scan in the AM, to check my heart again. This time around I got to see the pictures as they were being taken. The technologist that I've always had before would raise me so high that I could never see the screen to check out the pictures, but I had someone different today. This of course was the highlight of my day, exciting isn't it? I also learned that they mainly only take pictures of the left ventricle since this side does the most work. I'm always learning about my tests and procedures, of course I always ask the questions being the curious patient that I am. They have no problem answering me though. I had my lab for my blood draw after that and then I had my first CT scan. I usually have a PET scan, which scans my full body from the shoulders down, but this time around and probably from now on I will have a CT scan. They took pictures of my pelvic, abdomen and chest areas. It was weird to feel the "flush" feeling after they add the contrast to the IV in your arm. It makes you feel like you are peeing your pants. I'm glad that they warned my about that and didn't assumed that I have had one of these done in the past. I will receive my results on Wednesday when I meet with my oncologist, which leads me to some bad news.
I have heard through the grapevine that he will be leaving the St. Cloud area and will be moving back to where his family is from, so I am kind of upset. He has not told me yet, but I'm sure he will on Wednesday. He just started telling his patients a couple of weeks ago and I have not seen him since February. I asked the infusion nurse who she would recommend to take over my care and she suggested a new doctor that started in August right around the time I got diagnosed. She said he has an excellent bedside manner like my current oncologist does and he transferred from the Mayo clinic in Rochester, so that could be a plus. I still am very bummed. You put your life into some one's hands and trust them and then when they are going to leave, you feel as though your life will be endangered. At least that is how I feel. I can only hope and pray that I get another doctor who is just as good. Having a good doctor makes this journey so much better. Looking on the positive side, I guess it's always good to have a 2nd opinion on your treatment. Not that anything is going bad on mine, but a second set of eyes is not a bad idea.
I will update on Wednesday with my results. I just keep thinking positive thoughts that my heart will be super strong and I will be dancing with NED (no evidence of disease).
As some of you know Karyle passed away almost two weeks ago. I was unable to attend the funeral, but did go to the visitation. She had such a good life for the short time that she was here on this earth. Now I can only imagine how she is up in heaven dancing with Jesus. Please keep her family in your prayers as they continue to mourn. We will never understand why anyone gets this terrible disease of cancer, but she touched all of us some way or another.
The boys have been keeping us busy. Brock is eager to get outside and play as the weather continues to get nicer. Griffin is teething, so has not been the happiest camper lately. He is still funny as can be with his actions and baby talk. He is of course all over the place and into everything. He keeps us on our toes. I will try to post some recent pics next time.
I've heard from Stacie that some have signed up or donated for the Race for the Cure in May. If you haven't checked out the website you can also sleep in for the cure too, if you can't make it to the race. Every donation will help as this goes for breast cancer awareness, education, outreach, screening, preliminary treatment and research, which could not only save my life, but many others, so please donate if you can. The majority of the donations stays right here in Minnesota as the website stated. I will post the link again below this entry. Thanks for everyone who has signed up to participate and/or donated. Looking forward to seeing everyone.
Here is the link again.
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 have heard through the grapevine that he will be leaving the St. Cloud area and will be moving back to where his family is from, so I am kind of upset. He has not told me yet, but I'm sure he will on Wednesday. He just started telling his patients a couple of weeks ago and I have not seen him since February. I asked the infusion nurse who she would recommend to take over my care and she suggested a new doctor that started in August right around the time I got diagnosed. She said he has an excellent bedside manner like my current oncologist does and he transferred from the Mayo clinic in Rochester, so that could be a plus. I still am very bummed. You put your life into some one's hands and trust them and then when they are going to leave, you feel as though your life will be endangered. At least that is how I feel. I can only hope and pray that I get another doctor who is just as good. Having a good doctor makes this journey so much better. Looking on the positive side, I guess it's always good to have a 2nd opinion on your treatment. Not that anything is going bad on mine, but a second set of eyes is not a bad idea.
I will update on Wednesday with my results. I just keep thinking positive thoughts that my heart will be super strong and I will be dancing with NED (no evidence of disease).
As some of you know Karyle passed away almost two weeks ago. I was unable to attend the funeral, but did go to the visitation. She had such a good life for the short time that she was here on this earth. Now I can only imagine how she is up in heaven dancing with Jesus. Please keep her family in your prayers as they continue to mourn. We will never understand why anyone gets this terrible disease of cancer, but she touched all of us some way or another.
The boys have been keeping us busy. Brock is eager to get outside and play as the weather continues to get nicer. Griffin is teething, so has not been the happiest camper lately. He is still funny as can be with his actions and baby talk. He is of course all over the place and into everything. He keeps us on our toes. I will try to post some recent pics next time.
I've heard from Stacie that some have signed up or donated for the Race for the Cure in May. If you haven't checked out the website you can also sleep in for the cure too, if you can't make it to the race. Every donation will help as this goes for breast cancer awareness, education, outreach, screening, preliminary treatment and research, which could not only save my life, but many others, so please donate if you can. The majority of the donations stays right here in Minnesota as the website stated. I will post the link again below this entry. Thanks for everyone who has signed up to participate and/or donated. Looking forward to seeing everyone.
Here is the link again.
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
Friday, March 13, 2009
Join Team Nicole on May 10th....
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 .
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 .
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!
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