My oncologist called late last week to talk about a current Phase III clinical trial. This trial is for a specific subset of breast cancer patients. When I received my biopsy results, as well as the surgery pathology, it was determined I was HER2 negative. HER2 is a protein that attaches to the cancer cell and becomes part of the fuel for the cancer. This is considered to be a very aggressive type of cancer as this type typically grows very quickly because of the protein.
In all actuality my cancer is not a true HER2 negative, but rather a HER2 low. There isn't enough of the protein to consider it positive. The clinical trial the office called about is investigating whether or not HER2 low patients would benefit from the standard of care given to HER2 positive patients. There have been studies in England and Europe that have proven HER2 low patients to benefit from receiving the medicine Herceptin as part of their protocol. It cuts the recurrence rates in half.
It is a 50% chance I will be randomized into the group who receives the medicine. If not I will be in the control group for the study. The study will follow my treatment for 10 years. If the study reaches a Phase IV and eventually FDA approved then I would be one of the first people to receive this new protocol.
I have signed my consents to be a part of the study and now wait for randomization. I hope I get the Herceptin, but if not I know that I will be furthering the knowledge of breast cancer. And specifically breast cancer for women under 30. There aren't a lot of statistics or studies done on my group of women, but in my opinion we are the ones who need it. We have too many years to live and more research should be done on how to minimize recurrence and metastasizing cancers. This is just one way I will give back to the women who will follow me on this never ending bumpy path.
Wednesday, March 13, 2013
Sunday, March 10, 2013
Expansion
Last Wednesday I had a busy day. Well, busy because the two days prior to that I didn't leave the house because of the snow. I started my day off with a shower, which is still exhausting to do, but I made it through. I needed to do my hair because of two reasons. 1) I was going to the plastic surgeon's office . . . in Edina. I needed to at least try to look presentable 2) because I'm going to lose it soon; I might as well cherish the last few days I have with my blond locks.
I had a therapy appointment in the morning to work on my range of motion and to learn how to prevent lymphedema. Lymphedema is localized fluid retention and swelling. Because I had my lymph nodes removed my body doesn't have a way to remove the fluid and circulate it back to the blood. I need to continually exercise my arm to make sure the lymph drains and doesn't leave me with an elephant's arm.
Other than being slightly annoyed with the therapist--seriously, you know what I was being seen for, be prepared--the appointment went fine. I need to do exercises to regain my range of motion in my arm, shoulder and chest. I still can't lift my arms very high and I can't put them behind my head. Not a way I want to be stuck forever.
After therapy I had a lunch date with the best PA ever. Lisa and I typically talk ever single day at least once if not more. So to go nearly three weeks without each other is a long time. We dined over Red Robin, YUMM and great conversation. Two and a half hours later and a waitress who really wanted us to leave I had to get going to my plastics appointment.
It was my first breast expansion. Jess had counseled my on what it would feel like, but I really had no idea. The tissue expanders were placed by Dr. K during my surgery. They are a hard plastic with a metal (magnetic) port in them. This port is where the further expansions will be put in.
I had a therapy appointment in the morning to work on my range of motion and to learn how to prevent lymphedema. Lymphedema is localized fluid retention and swelling. Because I had my lymph nodes removed my body doesn't have a way to remove the fluid and circulate it back to the blood. I need to continually exercise my arm to make sure the lymph drains and doesn't leave me with an elephant's arm.
Other than being slightly annoyed with the therapist--seriously, you know what I was being seen for, be prepared--the appointment went fine. I need to do exercises to regain my range of motion in my arm, shoulder and chest. I still can't lift my arms very high and I can't put them behind my head. Not a way I want to be stuck forever.
After therapy I had a lunch date with the best PA ever. Lisa and I typically talk ever single day at least once if not more. So to go nearly three weeks without each other is a long time. We dined over Red Robin, YUMM and great conversation. Two and a half hours later and a waitress who really wanted us to leave I had to get going to my plastics appointment.
It was my first breast expansion. Jess had counseled my on what it would feel like, but I really had no idea. The tissue expanders were placed by Dr. K during my surgery. They are a hard plastic with a metal (magnetic) port in them. This port is where the further expansions will be put in.
The expanders are placed under the pectoral muscle so the breast does not sag. I have a permanent built in underwire bra. Not too shabby, if we are tyring to find the positive in the situation.
(image: hopkinsmedicine.org)
I went into see Dr. K for what would be a very quick appointment. Dr. K took out magnet to act as a stud finder. This finds the port in the expander and tells him where to inject the saline solution.
His nurse stood one one side and he stood on the other. Each injected 50ml of saline solution. Because I am numb I couldn't feel the needle going in at all, but I could feel my tissue and chest expanding. It was so odd. When I was at a different appointment someone related it to when you get your braces tightened. You go in feeling lose and comfortable and when you leave it feels tight and a little painful. It was really nothing compared to the past weeks, but it did require a little OTC pain medicine.
I will go back next week for the next 50ml of saline. Dr. K thinks it will take 3-6 fills to get to where I would want to be. Size--hmm, I have no idea. I guess I will just know when it's time to stop. Because I will be immunocompromised from chemo we will start to spread out my fills to the day before each chemo treatment. I will reach my stopping point far before I am done with treatment, therefore, I will get to carry these rock hard tissue expanders for about another year when I am done with radiation.
Thursday, March 7, 2013
God ALWAYS Provides
I believe in the power of prayer and a positive attitude. For those who have seen me over the last 6 weeks I think you can attest to this. Trust me, I have yelled and screamed and cried . . . . and cried some more; but I try every single day to wake up, say a prayer to the Lord and give myself a pep talk about staying positive. My prayer is typically something simple like "dear Lord, You are awesome in Your power. Please help me today to see the bright side, have a smile, and a good attitude. Please give me strength and comfort and security. In your name I pray, Amen."
Nothing special. But I do believe God hears me. I believe God has his arms wrapped around me. But, I also believe that God has sent an army of people to remind me of these things daily. I believe if you pray and ask that the Lord will provide, He will. Remember when your mom would tell you, if you don't ask you will never know the answer. I think that's how God works, too.
We have been flooded with generosity and love and more generosity. Sam and I often sit in pure awe of what YOU have given us. From flowers, to phone calls, to cards and then to the meals (oh, the homemade bread, YUM), to the offer of cleaning and daycare, and then to the financial support. Wow. Just plain, WOW.
We have so many earthly angels, it's frankly just incredible. A woman from the church, Katie, and the interim children's pastor at the church, Debbie, have gotten together toforce help us decide what help we will need. It's so hard accepting this help. Sam and I both know we will need help, but normally we are on the other end. Sending money when we can, or a meal, or just offering a hand. It's so hard to sit on the receiving end and understand that people want to do the same for you. In walks my angels Katie and Debbie. Oh Katie, I just want to jump you and give you the biggest hug (ok, that seriously might scare her away since we have only met a couple times). Her energy is just infectious and her love for the Lord is inspiring. Then there is my angel Debbie, she is organized to the T and is ready to delegate where needed. And she shares a birthday with Camden.
Both women have sat in prayer with us and held us when we cried. Katie and Debbie have set up a care calendar to delegate meals, cleaning, and Camden care. It's pretty incredible. If anyone is interested in the link, please text me. I can't believe I'm going to let down my guard and let someone clean my house and help with laundry, but I know I'm not super women. As much as I like people to believe I can do it all, I need rest and chemo is going to knock me down.
Katie is apart of a few local groups including MOPS and Team Jill. The ladies from MOPS are signing up and going to help and we haven't even met these ladies! Team Jill is an established Susan G. Komen 3-day team. They are even going to include me on their t-shirts this year as someone whom they are walking in honor of. It truly is an honor. Katie knows how to network and get people up and helping.
My angels Melissa and Jill. My best friends. My confidants. My wine drinking friends. True story, they both came over to help me organize baby clothes in bins. They got to my front door at the same time each holding a bottle of red wine. These girls know the way to my heart. Melissa has set up Team Nicole to walk/run the Race for the Cure on Mother's Day. It's going to be so much fun!! Jill, well Jill is just an angel. She is a snowblown path through the yard away. She has cried with me, cussed with me, laughed with me and most importantly drank wine with me. You girls lead my army, I love you.
Then there is my angel Jess. She is my breast cancer and breast surgery guru. Also she just had her baby yesterday! Happy birthday Abram Mason!! She also likes to keep secrets. She, behind my back, organized an online fund raiser. Like I mentioned before we met online through a newlywed website. These girls, my nestie besties, are some truly amazing woman. Most I have never met face to face, but I consider them to be friends. These girls come together and get things done that need to be done from a distance. Between Sam and Jess they put together a fundraiser.
Holy crap people. You are amazing. God again has answered our prayers. Just to give you an idea--one subcutaneous injection I will receive after each chemo dose is $6,000-10,000. Yes, we have insurance, but medical bills are going to come and I'm not working right now. I can't begin to express what your hard earned donations mean to me and my little family. I literally am writing in tears because I just can't explain what each dollar means to us. We are so blessed. From people I grew up with to people my parents grew up with to family. Each of you, thank you.
If you have ever doubted the power of prayer, don't. Stop and pray. Truly open your heart to the Lord and He will provide.
Nothing special. But I do believe God hears me. I believe God has his arms wrapped around me. But, I also believe that God has sent an army of people to remind me of these things daily. I believe if you pray and ask that the Lord will provide, He will. Remember when your mom would tell you, if you don't ask you will never know the answer. I think that's how God works, too.
We have been flooded with generosity and love and more generosity. Sam and I often sit in pure awe of what YOU have given us. From flowers, to phone calls, to cards and then to the meals (oh, the homemade bread, YUM), to the offer of cleaning and daycare, and then to the financial support. Wow. Just plain, WOW.
We have so many earthly angels, it's frankly just incredible. A woman from the church, Katie, and the interim children's pastor at the church, Debbie, have gotten together to
Both women have sat in prayer with us and held us when we cried. Katie and Debbie have set up a care calendar to delegate meals, cleaning, and Camden care. It's pretty incredible. If anyone is interested in the link, please text me. I can't believe I'm going to let down my guard and let someone clean my house and help with laundry, but I know I'm not super women. As much as I like people to believe I can do it all, I need rest and chemo is going to knock me down.
Katie is apart of a few local groups including MOPS and Team Jill. The ladies from MOPS are signing up and going to help and we haven't even met these ladies! Team Jill is an established Susan G. Komen 3-day team. They are even going to include me on their t-shirts this year as someone whom they are walking in honor of. It truly is an honor. Katie knows how to network and get people up and helping.
My angels Melissa and Jill. My best friends. My confidants. My wine drinking friends. True story, they both came over to help me organize baby clothes in bins. They got to my front door at the same time each holding a bottle of red wine. These girls know the way to my heart. Melissa has set up Team Nicole to walk/run the Race for the Cure on Mother's Day. It's going to be so much fun!! Jill, well Jill is just an angel. She is a snowblown path through the yard away. She has cried with me, cussed with me, laughed with me and most importantly drank wine with me. You girls lead my army, I love you.
Then there is my angel Jess. She is my breast cancer and breast surgery guru. Also she just had her baby yesterday! Happy birthday Abram Mason!! She also likes to keep secrets. She, behind my back, organized an online fund raiser. Like I mentioned before we met online through a newlywed website. These girls, my nestie besties, are some truly amazing woman. Most I have never met face to face, but I consider them to be friends. These girls come together and get things done that need to be done from a distance. Between Sam and Jess they put together a fundraiser.
Holy crap people. You are amazing. God again has answered our prayers. Just to give you an idea--one subcutaneous injection I will receive after each chemo dose is $6,000-10,000. Yes, we have insurance, but medical bills are going to come and I'm not working right now. I can't begin to express what your hard earned donations mean to me and my little family. I literally am writing in tears because I just can't explain what each dollar means to us. We are so blessed. From people I grew up with to people my parents grew up with to family. Each of you, thank you.
If you have ever doubted the power of prayer, don't. Stop and pray. Truly open your heart to the Lord and He will provide.
I Signed Up For a 5K
Don't tell my boss. Seriously. He would think I've officially lost my mind. He's a busy surgeon that manages to find time to do triathalons for insanity fun. We work in care teams: the doctor, the PA, and me the care coordinator. We have come up with an agreement that since our doc works out so much, he does enough to cover the PA and me. I think this is a great agreement.
Well, I signed up for a 5K. Yes, I'm going to walk it, but I still signed up. Actually . . . Sam and Camden are signed up, too. As well as a team of folks and we'd love your support or company.
We will be spending Mother's Day 2013 supporting breast cancer awareness and research while walking in the Race for the Cure.
Well, I signed up for a 5K. Yes, I'm going to walk it, but I still signed up. Actually . . . Sam and Camden are signed up, too. As well as a team of folks and we'd love your support or company.
We will be spending Mother's Day 2013 supporting breast cancer awareness and research while walking in the Race for the Cure.
(image: Susan G. Komen)
There is absolutely no obligation because I know so many of you have given your financial support to us already, and for that I am so grateful. However, if you wish to support "the cause" please follow the link and make your donation.
If you would like to join us on Mother's Day here in Minneapolis you can sign up at the link below. Team Nicole with organizer Melissa C.
I think what I'm most excited about, aside for spending the day as a family, is wearing a breast cancer survivor shirt and taking my picture in the Mall of America rotunda with all of the other survivors. No, I'm not a survivor yet, but I'm a fighter. I probably won't have hair on my head, but I will wear it with pride that day. Because my fight will help others fight and this race will aid in finding more research and more opportunity to find a cure for this devil.
Monday, March 4, 2013
What Are We Waiting For
In order to make sure we know EXACTLY what we are dealing with I need to have a few scans before I can start treatment. Dr. T suggested I have a PET scan, head MRI, and EKG before I begin my chemo. I also have to go to chemo class.
The PET scan is a scan to show the function of my organs. This is a full body scan, to my knowledge, and will pick up on any additional tumors in my body. They use a contrast dye to illuminate anything out of the ordinary. This scan terrifies me. Not so much the scan, but what the results might show. I don't want there to be any other cancer in my body.
The brain MRI was suggested, but because the tissue expanders have metal in them and an MRI is magnetic I get to do a CT scan instead. This is great. Much bigger tube and no Jason hockey mask covering my claustrophobic face. This is to make sure the cancer isn't in my brain. Again, scary.
The PET scan is a scan to show the function of my organs. This is a full body scan, to my knowledge, and will pick up on any additional tumors in my body. They use a contrast dye to illuminate anything out of the ordinary. This scan terrifies me. Not so much the scan, but what the results might show. I don't want there to be any other cancer in my body.
(image: drugline.org)
The brain MRI was suggested, but because the tissue expanders have metal in them and an MRI is magnetic I get to do a CT scan instead. This is great. Much bigger tube and no Jason hockey mask covering my claustrophobic face. This is to make sure the cancer isn't in my brain. Again, scary.
Last I have to get an EKG or ECG (same thing). This is just a fast little test to show that my heart is healthy because the AC chemo can cause heart failure in patients who may have an underlying heart condition.
Sam and I will also attend a chemo class together. I'm not really sure what to expect here. It's given by one of the oncology nurses and I guess she just talks about what will happen during treatment and what I need to do before and after to insure that I feel the best I can.
I should be calling the wig shop or writing thank you notes, but instead I sit here blogging and feeling a bit sorry for myself. Today is my first day alone alone. I guess I'm just in one of those valleys that people talk about when they mention peaks and valleys. I'll get out of it and tomorrow will be a better day.
The Drains Came OUT
On Wednesday last week I had my post operative appointment with Dr. K the plastic surgeon. During surgery I had to Jackson-Pratt drains placed. I had a tube coming out of my ribs under my new "breasts" on each side. This made it impossible to sleep on my side and made any movement very uncomfortable. I kept hearing from other people, and mostly my angel Jess, that I would feel so much better when the drains came out. The out put of the drains had to get down to less than 30ml of fluid before I could have them removed.
Three times a day my mom or I had to strip the fluid from the drain tubes and empty the contents and measure them. I had been watching the fluid slowly decrease as I had been home. I wanted those drains out so bad.
They had brought me to tears many days because they were so itchy and uncomfortable. By the weekend I was down to 30ml on the left and about 45ml on the right. By Monday I was down to 30ml for each. I told my mom I wasn't leaving that office until he pulled those drains.
Because of the drains I was unable to take a full shower either. This was awful. I wore a cami that was deemed "my suit" that zipped up the front and had a pocket inside for each drain. Great invention, still didn't make these comfortable.
When we got to Dr. K's office he asked to see my output log. He looked at my 24 hour totals and decided both drains would go. Thank the Heavens!! With a quick clip of the suture and 1 . . . 2 . . . 3 . . . pull . . . they were out. It was amazing how much better I felt immediately. We went over what would happen in terms of expanding during my chemo and when we would do the next stage of reconstruction. He gave me the lifting restriction of a gallon of milk. Not a lot, but I can at least help carry the diaper bag now.
(image:http://www.notasparrowfalls.com/2011/09/jackson-pratt-jp-drains-after-double.html)
Three times a day my mom or I had to strip the fluid from the drain tubes and empty the contents and measure them. I had been watching the fluid slowly decrease as I had been home. I wanted those drains out so bad.
They had brought me to tears many days because they were so itchy and uncomfortable. By the weekend I was down to 30ml on the left and about 45ml on the right. By Monday I was down to 30ml for each. I told my mom I wasn't leaving that office until he pulled those drains.
Because of the drains I was unable to take a full shower either. This was awful. I wore a cami that was deemed "my suit" that zipped up the front and had a pocket inside for each drain. Great invention, still didn't make these comfortable.
When we got to Dr. K's office he asked to see my output log. He looked at my 24 hour totals and decided both drains would go. Thank the Heavens!! With a quick clip of the suture and 1 . . . 2 . . . 3 . . . pull . . . they were out. It was amazing how much better I felt immediately. We went over what would happen in terms of expanding during my chemo and when we would do the next stage of reconstruction. He gave me the lifting restriction of a gallon of milk. Not a lot, but I can at least help carry the diaper bag now.
The Treatment
I don't htink I had realized how many people were reading this little thing called a blog. Thank you to each of you. I need this support. My heart is low when my mind starts wandering through the maze of cancer thoughts.
Dr. T layed out the treatments that I will have to kill any remaining cancer cells in my body. The doctors assume that all the cancer has been ridded of via the surgery, but there could be tiny little cells hanging out in my body ready to attack and we need to kill them. My breast reconstruction will not go on to the next stage until I am finished with the treatments. I will still go in for expanding, but the exchange to implants, nipples, and aerola tattoos will come (fingers crossed) later this year.
I will have 2 types of chemo, followed by radiation, followed by chemo in a pill form for 5-10 years. The medicines I will have are AC followed by Paclitaxel. Doxorubicin, cyclophosphamide, and paclitaxel for long. The AC will be given first for 4 treatments. Once every other week for a total of 8 weeks. I will rest a month then be given the Paclitaxel for the same schedule. I will rest a month and then be given radiation every day Monday through Friday for 6 weeks.
Dr. T said the AC will make me lose my hair. Point blank. No maybes. Just, I will lose my hair. Call me vain, but I hate this. It makes my cry when I comb through my hair. I don't know any women who would be ok with this. I'm too nervous to even call the wig shop. I can't decide; do I suck it up and wear a cute scarf or get a wig? The AC will also make me very sick. It is poison running into my body. It will turn my urine red for a few days after the treatment and it will make me nauseated. They do have medicine to combat this, however. But, ask my mom and Sam. I hate taking medicine. I'm kind of a hippy and I like to try natural things. It's hard for me to realize my body has succumb to needing extensive medical treatment.
The taxel will have far less side effects and over all should be easier on my body. The radiation will be a cake walk by the time I get to that. Other than being time intensive, I can more than likely work full time through radiation and do the treatment during my lunch break.
My selfish question of the conversation was will we be able to have another child when this is done? There is a 20% chance of my body going into premature menopause. Dr. T will order a shot of Lupron before my treatments. There has been research showing this to protect the ovaries during treatment. This isn't completely proven, but the medicine will not hurt me in any way.
I will try getting my chemo via IV at first. I will have the option of having a port placed at any time, but right now I just don't want to go through another surgery.
After all is said and done I will be on a medication called Tamoifen for 5-10 years. Right now research is showing 10 years. This is just an oral medication that I have to take every day to suppress the estrogen that fuels my cancer.
I'm scared. I feel somewhat defeated. I don't want to do this. I have any army behind me fighting and I know you will all lift me when I fall.
Dr. T layed out the treatments that I will have to kill any remaining cancer cells in my body. The doctors assume that all the cancer has been ridded of via the surgery, but there could be tiny little cells hanging out in my body ready to attack and we need to kill them. My breast reconstruction will not go on to the next stage until I am finished with the treatments. I will still go in for expanding, but the exchange to implants, nipples, and aerola tattoos will come (fingers crossed) later this year.
I will have 2 types of chemo, followed by radiation, followed by chemo in a pill form for 5-10 years. The medicines I will have are AC followed by Paclitaxel. Doxorubicin, cyclophosphamide, and paclitaxel for long. The AC will be given first for 4 treatments. Once every other week for a total of 8 weeks. I will rest a month then be given the Paclitaxel for the same schedule. I will rest a month and then be given radiation every day Monday through Friday for 6 weeks.
Dr. T said the AC will make me lose my hair. Point blank. No maybes. Just, I will lose my hair. Call me vain, but I hate this. It makes my cry when I comb through my hair. I don't know any women who would be ok with this. I'm too nervous to even call the wig shop. I can't decide; do I suck it up and wear a cute scarf or get a wig? The AC will also make me very sick. It is poison running into my body. It will turn my urine red for a few days after the treatment and it will make me nauseated. They do have medicine to combat this, however. But, ask my mom and Sam. I hate taking medicine. I'm kind of a hippy and I like to try natural things. It's hard for me to realize my body has succumb to needing extensive medical treatment.
The taxel will have far less side effects and over all should be easier on my body. The radiation will be a cake walk by the time I get to that. Other than being time intensive, I can more than likely work full time through radiation and do the treatment during my lunch break.
My selfish question of the conversation was will we be able to have another child when this is done? There is a 20% chance of my body going into premature menopause. Dr. T will order a shot of Lupron before my treatments. There has been research showing this to protect the ovaries during treatment. This isn't completely proven, but the medicine will not hurt me in any way.
I will try getting my chemo via IV at first. I will have the option of having a port placed at any time, but right now I just don't want to go through another surgery.
After all is said and done I will be on a medication called Tamoifen for 5-10 years. Right now research is showing 10 years. This is just an oral medication that I have to take every day to suppress the estrogen that fuels my cancer.
I'm scared. I feel somewhat defeated. I don't want to do this. I have any army behind me fighting and I know you will all lift me when I fall.
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