Monday, December 7, 2009

Inspirational October

It’s time to update again as I have visited my new oncologist a couple of weeks ago and had my blood work drawn for my usual tests. My blood work was all normal, tumor marker was 17.9. My liver function tests were a little higher then what they normally are, but still in the overall normal range. I was a little nervous on what my tumor marker was going to be due to that, but concluded that since I was on tamiflu for 10 days that is what contributed to my higher liver counts. The boys had influenza the first week in November and their pediatrician thought it would be smart for me to be on that for a precautionary. She’s so awesome, not only does she care for my children’s health, but mine as well.

I will not have another scan until January, which I will have a PET scan. I will be having a scan every 4 months and will alternate between the PET and CT scans, unless of course they need to have a better explanation if something looks concerning, then I may have both. But hopefully that won’t need to happen. Other than that my new oncologist will continue with the Herceptin and the Femera as prescribed by my previous oncologist. Overall I thought that he was good. He listened to my concerns, answered my questions, as I always have a lot of those each doctor visit. I requested that I have a colonoscopy done soon due to my family history with polyps and colon cancer. I was planning on having one after Griffin was born, but of course some other issues took priority. I will be having that in the middle of December.

I had some very inspirational weekends in October. Stacie, my mom, and I attended the annual Surviving with Style in St. Cloud. It is a fundraising event for the St. Cloud Breast Center. They have a nice lunch, silent action and a fashion show that has breast cancer survivors and their families model some winter fashions from the local department stores. Last year I was given free tickets to go. This year I thought that I would give back and go again. It was a lot of fun and met some breast cancer survivors that were my age, which was nice for me and also for them too. The following weekend was the breast cancer walk, Making Strides against Breast Cancer in St. Cloud. It was a cold, snowy morning, but we all had fun and I believe that there was around $35,000-$40,000 raised. A big thanks to all of you who donated to my team and we are looking forward to next year. I also attended the Woman of Faith conference in St. Paul. I recommend this to anyone who feels that they need a little push in life to attend or if you just want to bring yourself closer with your faith. I will be going again next year and I thank Stacie for inviting me to attend. It was a lot fun and to experience such a range of emotions in a short amount of time, from crying to laughing so much that you are crying, I loved every moment of it. The highlight of the weekend was seeing Steven Curtis Chapman sing and talk about how he and his family have dealt with the death of his daughter. It’s amazing how everyone deals with tragedies in their life and what they make of them. We all have struggles in life, but it is how we deal with them and what we make of them is what matters. That is my motto at least. I hope everyone has a Merry Christmas and Happy New Year and thanks again for all the support you have given my family and I throughout the last year. We are truly grateful for all the wonderful, caring people that we have in our lives. We love you all and here’s to another new year of living life and living it CANCER FREE:-)!



Stacie, my mom Linda, and I at Surviving with Style


The survivors at the Making Strides against Breast Cancer Walk


Team Fight Like a Girl




Stacie, my mother-in-law Cheri and I at Women of Faith Conference

Monday, September 21, 2009

Team Fight Like a Girl

I am happy to report that everything was normal with my scans and there were no concerns this time around. My MUGA scan was a bit lower then last time with a score of 63%, but still above the 50% that we want to be at. The CT scan showed the same liver lesion that was seen before, no change in size and some air that was still in my abdominal cavity from my surgery. The surgery went well. I just have a little tenderness here and there. It seems that I am starting to get more hot flashes, but I will have to learn to deal with that. The biopsy report from my ovaries was that they were normal, functional ovaries with cysts. I am now on Femera, which is a hormonal drug that I take orally everyday. I will continue with the Hercepitn every 3 weeks. My bloodwork was good as well, platelets a little low, but nothing to be too concerned about. My tumor marker was 16.4, so that is in the normal range as well. Looks like the drugs continue to do the job on keeping the cancer away.

I would like to invite everyone to join team Fight Like a Girl for a breast cancer walk in St. Cloud on Saturday, October 10th. Here is the link to register and I require everyone who wants to walk to donate $10.00 and also to ask family and friends for donations as I have a team goal of $100.00, but I think that we should have no trouble meeting that goal. If you are unable to join us, you can donate to the team and that will go towards our goal, even if it's only $5.00 every little bit helps. Here is the link and I hope it is easy to register or donate.

http://main.acsevents.org/site/TR?sid=55931&type=fr_informational&pg=informational&fr_id=20209


Also if you would like to purchase some Fight Like a Girl apparel here is the link for that.

http://www.signifypromotions.com/store/merchant.mvc?Screen=SFNT&Store_Code=PINK

I couldn't get the link to copy right so just highlight the website, copy & paste it in the address bar.

Thursday, September 10, 2009

Oophorectomy

I am scheduled for an oophorectomy tomorrow morning at 8AM. Feeling a little anxious and irritable as I am not sure what to expect for surgery or after. I know that it will all go well, but nervous about being put under for the first time and what will I feel like afterwards. The tamoxifen that I take is suppose to put me into menopause, but I still have some estrogen in my body, so having the ovaries taken out will definitely put me into menopause and that is my worry for the after effects of this surgery. Although I think that my body has been preparing me this week as it seems that I am having more hot flashes then normal the past few days. I will be taking a few days off from work as they are doing it laparoscopically, so not much down time when the ovaries and tubes are removed this way. If all goes well I should be on my way home by noon tomorrow. My mom is one the way up to help with the boys this weekend and they are excited to see their grandma and spend time with her as one is still up asking when will she be here.

I will start a new drug called Femera shortly after my surgery. This is another hormonal therapy drug that is for post menopausal women. The tamoxifen that I am taking is for pre menopausal, so I will no longer be on that. Unfortunately on Monday I have to have my bloodwork, MUGA scan and CT scan done in order to continue my Herceptin treatment. I never look forward to this time. If only I could freeze time. I had an appointment on Tuesday and they would not give me the Herceptin as I have had 3 treatments since my last MUGA scan and they want to make sure that my heart is staying strong since I am so young. I feel that I'm in good care when they take precautionary steps such as that. I will meet with the oncologist on Wednesday for the results and will then have my Herceptin infusion if all is well after that.

We had a great time on our vacation in Branson. What beautiful country and we had great weather while we were there to enjoy our time off from everyday normal life. The boys both celebrated their birthdays while we were there. I can't believe that Griffin is already 1 and Brock 4. Time flies. When I got home, it seemed as I was thinking back to what we were experiencing a year ago from that time, all the worries, the unknowns, and fears. I did not sign up for this, but I think that I have been a team player and what I have experience has made a difference in my life. I don't sweat the small stuff anymore and in general enjoy everyday things in my life that I used to take for granted, which we all need to do, as no one knows what lies ahead of them. Thanks to everyone for all the well wishes for tomorrow.


Griffin enjoying his birthday cake


Brock swimming at the pool in Branson

Thursday, July 23, 2009

A sigh a some relief

It has been a stressful 2 months since my last update especially in the last two weeks. I did not want to update until I had all the facts straight, so here it goes.

I had a MUGA scan at the beginning of the month along with a CT scan and my normal blood work that they check. MUGA scan was 67%, which was up from last time, blood work was all in normal range,but the CT scan showed one spot on the liver measuring 10 mm. I was very upset when I was told this, although it was not confirmed by the CT scan that this was a cancer spot, it was a spot that was suspicious and needed to be looked at better, so I had an ultrasound the next week. That did not prove anything either, but my oncologist thought that it was nothing to worry about, but given my history I should do a PET scan, so last Friday I had that done. Monday morning I received a call from the nurse that before my appointment with the doctor on Tuesday, I needed to have my left ovary looked at again. If you recall I had that show up last CT scan as a cyst, but this time it lit up on the PET scan, but the liver did not. So the rollercoaster ride continues. I had an ultrasound on the ovaries and uterus. This did not prove if it is a cancer tumor on the ovary or a hemorrhaging cyst. Whatever it is ,it has grown since April by 2 cm. So the oncologist has recommended that I have the ovaries removed soon and since we are at it, we might as well get rid of the uterus. There is a good side to this decision and a bad. The good, hopefully no more of that darn estrogen in my body, as this is what has fed my cancer and I will have more treatment options available to me. There are a lot more hormonal chemotherapy drugs out there for post menopausal women then pre menopausal and a couple of these drugs work very well with Herceptin. So my chances of long term survival will go up, yeah. Now the bad, I will officially be a 50 year old in a 29 year old body, oh well if it saves my life its all worth. So next Friday the 31st I have an appointment with my ob/gyn doctor the same one who I saw when I was pregnant with the boys and he will be the one who will do the hysterectomy. But in the meantime we are looking forward to our planned vacation to Branson, MO with Bryan's family the 2nd week in August. We can't wait.

In regards to the spot that they saw on the liver, the conclusion is that it was a scar from where they did the liver biopsy, since it was in the same exact location where that was taken place at. Like I told the nurse when she said that the liver did not light up, you can have your ovaries removed, but not your liver. I continue to get my Herceptin infusions every 3 weeks and I will have a another CT scan in September as a precautionary scan to make sure everything is still good.

As many of you already know, my dad passed away at the end of May, due to pneumonia and an infection in his colon. It was hard, although I had 16 years to prepare myself for it as he was in a motorcycle accident and has been in a nursing home since then. He had a brain injury, but he knew what was going on all that time. Before he died I told him that he did not have to fight anymore, but at the same time I was thinking that his strength has taught me to fight for my life no matter what the battle may be, as we all have a fight in our life, some are easier then others, but everyone is fighting for something or against something in their life. Which leads me to my next stressful event, my mom had surgery on her colon. She is a 22 year colon cancer survivor, but due to her surgeries she gets adhesions built up in her intestines and had a blockage occur. So after 3.5 hours of surgery last Friday they removed the blockage in her small intestine and she is on the mend now which I am grateful for and so is the rest of our family.

I hope that these next two months bring good news and I remain cancer free. I will update after my appointment with the ob/gyn doctor. I hope everyone is enjoying the summer, can't believe it will soon be August. We went camping in June and I posted a family picture of us. We all had fun and these are the moments in my life that I am so grateful to have.

Wednesday, May 27, 2009

I AM A SURVIVOR

I had my MUGA last week. I thought that I had it this week, but was mistaken. My refraction rate was 65%, so it went up compared to last time. Yeah!!! I think if I get some cardiovascular activity in it helps. Sometimes that is hard for me, but with summer here and nice weather, I don't think that it will be a problem to get outside and exercise a bit. My next appointment will be my herceptin infusion next Wednesday and another one 3 weeks after that. I think that I have another CT scan in July before seeing my oncologist for the last time before he leaves the clinic. Then I will need to choose someone new. I am nervous about this, but excited at the same time to have another opinion on my care. So as long as everything is quiet I probably won't update until then.

Thanks again to everyone who has supported me in this journey. It is getting closer and closer to it being one year since my diagnosis and boy have I come a long way. In the beginning a little part of me thought that I would not be here typing this to you, but instead I'm cancer free and kicking its butt. There are so many survivor stories out there and I just have to keep reminding myself that yes, I am a SURVIVOR and yes I will keep winning this battle. Of course not without a little help from my faith, modern medicine and of course all of you out there cheering me on. I love you all.

Wednesday, May 13, 2009

A Successful Race for the Cure

Team Nicole successfully finished the Race for the Cure on Sunday. It was AWESOME and very inspirational to see 50,000 people come out on Mother's Day to raise money for breast cancer. I was emotional as many others were too as we were walking to the starting line, but as the race went along it got better. Hearing the song by Melissa Etheridge, I Run for Life, is what did it in for me. If you have never heard the song, I'm sure it would bring you to tears as well. We all wore our own t-shirts that we received many comments about. The girls wore Fight like a Girl and the boys wore Fight for your Girl t-shirts. I had a wonderful weekend spending time with my mom, my brother and his family and my aunt Sandy along with her family. All whom came up on Saturday and we spent some quality time together at pool at the hotel. Brock has successfully learned how to swim with a life jacket on, very exciting for him. The Nelson family (Bryan's sister Stacie's family) met us at the race on Sunday morning. All together we had 18 people on our team. I hope next year that I can double it, so all of you reading this better mark your calenders for Mother's Day next year. It will be a tradition from now on for my family to walk this. Although my husband suggested every other year, as he is a fisherman and this of course is on opening weekend. Guess who will win that argument:-)

Today I had another Herceptin infusion along with seeing the endocrinologist in regards to my abnormal finding on my pituitary gland. She said that she thinks that it is nothing serious. My bloodwork was normal and I have not had any other issues that would be related to my pituitary gland not functioning properly. I will follow up in 6 months, so I will have another brain MRI in November to make sure nothing changes. That of course was excellent news! I have another MUGA scan coming up in 2 weeks. Hoping that my heart will continue to stay strong so I can keep receiving the MIRACLE drug. I've posted some pictures from our wonderful weekend.


Team Nicole


Grandma Linny and Brock walking


Look at all those people!


Bryan and Griffin



Brock swimming


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.

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

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 .

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.

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!

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.


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!

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

Thursday, January 1, 2009

Welcome 2009!



Happy New Year! Hope everyone had a safe and happy new year. It's sad to say that we did not make it til midnight, but we did watch the ball drop in New York, that counts in my book as bringing in the New Year even though it's an hour early.

I had my PET scan on Christmas Eve and received the results on Monday and there is no change in regards to any cancer, but there seemed to be some inflammation in my intestine area, not sure if this is due to the chemo or not, but the radiologist noted that a clinical follow-up should be done. I will have to wait until Monday when my doctor is back at the office. I'm sure I will hear then if not I will see him on Wednesday when I have my next chemo, which will just be the Herceptin. Looking forward to only having to be there a couple of hours instead of 4-5 hours.

I'm proud to say that I'm starting to get some fuzz on my head, so far coming in dark and not blonde or red or purple, LOL. Bryan is growing his back out and of course he is leading, but not by far. The kids had a New Year party at daycare and I took a picture of them with their party headbands. Hoping 2009 will continue to bring good results and we keep kicking some cancer butt.