I received awful news on Tuesday--nothing about me or my immediate family. My dear friend, whom I met online through thenest.com, who has been one of my biggest supporters through breast feeding, parenting, and now cancer found out her family is now in the cancer club. Her mother was diagnosed this week with Stage 4 pancreatic cancer which has spread into her stomach and liver as well.
Without exposing too many personal details online, please keep Lisa and her mom in your prayers. Pray that they will find the best medical care which will give her the best chance at survival. Pray that her mother will fight hard. Pray that Lisa's sister will get to have her mother at her wedding next summer. Pray that Lisa's mom will feel God's love and everlasting strength and comfort as she discerns through the jungle of medical professionals that is cancer.
Cancer, we hate you.
Thursday, March 28, 2013
The Days Since Chemo
There really hasn't been much to update since my first treatment, sorry to my fellow followers. The first treatment . . . well, hmm, to put this without swear words . . . was not fun. I was already nauseated on my way home from treatment and the next day was worse. The mornings seem to be the best, but then it just gets worse as the day goes on.
Saturday and Sunday were the worst days and by Monday the nausea was subsiding, but starting on Sunday I had a splitting headache that would not go away. I tried to stay on top of pain medicines and antinausea medicines, but nothing really made it better. Watching TV commericals with food is nearly impossible and watching the Food Network is out of the question.
Frankly, I'm too stubborn so I didn't call the doctor. I didn't want to be considered a baby that just couldn't handle it. I deal with patients like that on a daily basis and I didn't want to be one of them. I'm 29 years old, I'm tougher than that.
Finally on Wednesday I began to feel a little bit better. Other than being very dizzy, the nausea was mostly gone and my headache was at least managable. I was still really tired and the simplest of tasks made me exhausted. Taking a shower required a two hour nap afterward just to recover.
My appetite hasn't been the same. Mexican food is a no go (umm, seriously I wonder why), so I have lived off of chicken nuggets and tots because they are bland and I know they will sit well. I'm lucky to get about one good meal a day because I don't have an appetite. I typically love food, and I love Mexican food. Some will be shocked to know that the thought of Chipotle makes me want to puke.
Each day has gotten better and that is what is important. I'm finally starting to feel normal; just time time for them to push poison through my veins again.
I did finally talk to the Dr. T's nurse Amanda. We went over my side effects. Well, my stubborn-ness did not pay off. Apparently, I should not have felt this horribly. I had more severe and more side effects by number than I should have and I should have called the doctor. They are rearranging my medicines for the next dose so hopefully I will feel a little more normal.
Dose two is tomorrow. I don't want to go because I don't want to feel like this again. But, I will get in the car tomorrow morning to start another battle. My hair has stayed stable through the last couple weeks; until yesterday. I finally blow dried my hair and flat ironed it. After I was done there was a big chunk of hair in my brush. I cried. I just feel like cancer has stripped me of so much, why my hair, too? But my wig, Juliet (named by my sister), is waiting on the wig stand for when I need her.
Thank you for the continued prayers, cards, and kind words. You people are amazing and without you I wouldn't be constantly reminded why I fight. I don't know if in my lifetime I will ever be able to fully express my gratitude to you. But, please, know that when I say thank you that is the best words I have for the generosity and support.
Saturday and Sunday were the worst days and by Monday the nausea was subsiding, but starting on Sunday I had a splitting headache that would not go away. I tried to stay on top of pain medicines and antinausea medicines, but nothing really made it better. Watching TV commericals with food is nearly impossible and watching the Food Network is out of the question.
Frankly, I'm too stubborn so I didn't call the doctor. I didn't want to be considered a baby that just couldn't handle it. I deal with patients like that on a daily basis and I didn't want to be one of them. I'm 29 years old, I'm tougher than that.
Finally on Wednesday I began to feel a little bit better. Other than being very dizzy, the nausea was mostly gone and my headache was at least managable. I was still really tired and the simplest of tasks made me exhausted. Taking a shower required a two hour nap afterward just to recover.
My appetite hasn't been the same. Mexican food is a no go (umm, seriously I wonder why), so I have lived off of chicken nuggets and tots because they are bland and I know they will sit well. I'm lucky to get about one good meal a day because I don't have an appetite. I typically love food, and I love Mexican food. Some will be shocked to know that the thought of Chipotle makes me want to puke.
Each day has gotten better and that is what is important. I'm finally starting to feel normal; just time time for them to push poison through my veins again.
I did finally talk to the Dr. T's nurse Amanda. We went over my side effects. Well, my stubborn-ness did not pay off. Apparently, I should not have felt this horribly. I had more severe and more side effects by number than I should have and I should have called the doctor. They are rearranging my medicines for the next dose so hopefully I will feel a little more normal.
Dose two is tomorrow. I don't want to go because I don't want to feel like this again. But, I will get in the car tomorrow morning to start another battle. My hair has stayed stable through the last couple weeks; until yesterday. I finally blow dried my hair and flat ironed it. After I was done there was a big chunk of hair in my brush. I cried. I just feel like cancer has stripped me of so much, why my hair, too? But my wig, Juliet (named by my sister), is waiting on the wig stand for when I need her.
Thank you for the continued prayers, cards, and kind words. You people are amazing and without you I wouldn't be constantly reminded why I fight. I don't know if in my lifetime I will ever be able to fully express my gratitude to you. But, please, know that when I say thank you that is the best words I have for the generosity and support.
Saturday, March 16, 2013
Chemo #1
I hadn't been sleeping well the last couple nights in anticipation of what to come. I had been telling Sam from the beginning that I was fine with the cancer stuff, I was fine with the surgery and I was fine with the reconstruction; but chemo would be the one thing that would break me. The thought of poison running through my body is just really weird. I know I want to work in medicine, but sometimes I don't agree with the medicine going into me. I understand the science and the theories, but it's just different when it's you.
I woke up before the alarm and my mind was spinning. There was just so much unknown about how I was going to feel during and after the treatment. By the time Sam's alarm went off I was in tears. I was so scared of everything. I didn't want to do chemo, I was done with this cancer stuff. Sam held me and assured me we were in this together. I had got him a card on the day of my surgery which I feel sums things up for us pretty well.
I woke up before the alarm and my mind was spinning. There was just so much unknown about how I was going to feel during and after the treatment. By the time Sam's alarm went off I was in tears. I was so scared of everything. I didn't want to do chemo, I was done with this cancer stuff. Sam held me and assured me we were in this together. I had got him a card on the day of my surgery which I feel sums things up for us pretty well.
I love you.
Nothing will ever get in the way of that.
Because together we have a the strength
to look the world in the eye and say--
"Give us your best shot. We can take it."
And you know what? The world will see
that what we have, "different" though it may be,
is far too beautiful, far too big to ever weaken.
You are half of my heart, and I am half of yours.
There's no one and nothing that can separate us.
We have an awesome future ahead of us.
One that I know we'll face together,
hand in hand and heart-to-heart . . .
because I love you and you love me back
--J. Gahr
We got ourselves showered and ready to go. Because it was raining we didn't know what traffic would be like to downtown. Camden may have been a little confused because we were leaving nearly an hour earlier than normal. I had packed a bag with my breast cancer planner, a book, the iPad, and my wallet. Again, there isn't anything online that you can find that will give you a list of what your chemo bag should entail. I mean people bring suitcases in there, so I wasn't sure what I would need.
We dropped Camden off and he started his day out with french toast. I couldn't get enough kisses before I went. He has great kissing lips. But we quickly got back on the road because of the borderline freezing rain.
Once at the clinic, I checked in and waited for my labs to be drawn. I had the same phlebotomist as last time. A nice Nigerian woman with a sweet British accent named Liz. I told her I was going to grow to hate her. Just joking of course. She had to get I think about 10 tubes of blood from just my hand. Because they were doing treatment into my arm she had to go low to not get in way of where my IV would be placed. She got 20ml the first stick. Then tried two more times to get more as there were four more tubes needing blood. After the third total stick and no more blood, she stopped because she didn't want to dig too much. There is quite a bruise, but not too bad considering. And she was gentle about it.
Because I was the first appointment of the day, I was taken right back to the exam room to see Dr. T. She always asked if I have been hospitalized, any new pain, new concerns, and then gives me a quick physical exam focusing on my heart and lungs as well as my lymph nodes in my arm pit and neck. Then she puts in the final orders for the chemo and out the waiting room I go to wait for my nurse.
We over heard the oddest conversation from a man about his toe nails and finger nails falling out. It was so weird, but all I could think of was if my finger nails and toe nails will fall out, too. Not soon after, my lovely pregnant nurse Caitlyn came to get me to start treatment.
I was the first one back into the infusion room so I got to choose where I wanted to sit. We chose a seat by the window and the TV. Caitlyn went through what the timeline would be for the day and what medicines I would be receiving. I signed my consent and she got my IV set up. With a nice armed blanket, my feet up, and my iPhone I was set.
My shirt, courtesy of my breast cancer angel Jess, was quite the hit. It says "STPD CNCR". I felt there wasn't anything more fitting in my wardrobe. I received 3 antinausea medicines, then the adriamycin, then the cytoxan. Just like promised we were all finished up with everything since I walked through the door in about 3 hours. During my cytoxan I also go a massage. Apparently, a local massage school comes in and gives free massages to the chemo patients. It was great. She rubbed my neck and back and shoulders. It was all I wanted and more.
Just before I was to go, Caitlyn has one more medicine to torture me with. It's the medicine to suppress my ovaries and hopefully protect my eggs a little more. She was going to inject a pellet into my belly. Yes, you read that right, it was a pellet. The needle was the biggest thing I have ever seen. The injection itself wasn't that bad, but my belly sure hurt afterward. Luckily it's a three month dosage so I will only have to get 2-3 more of these. It reminded me of the boob harpoon they used for the core biopsy.
We left the clinic and walked down to the Midtown Global Market and had the best Mexican food ever. I'm still trying to decide if that was a good idea or not, but it sure tasted good going down.
We made a quick stop at the pharmacy for anitnausea medication and then went home. By the time we got there I was wanting a nap and wasn't feeling the best. I took about a two hour nap and then the nausea hit hard. I spent most of the early evening in the bedroom with a puke bucket nearby. But, my baby boy came into rub my feet. I love him so much.
After drinking some flavored water I felt a little better, but soon made my way to bed. I was just hoping the next day would go better.
Clinical Trial Randomization
This will also be a short blog post, just to let you know which group I am in for my clinical trial.
I was randomized into the control group. Boo, not what I was hoping for. I really wanted to get the Herceptin, but there is no change in my original protocol so we will "just keep swimming."
I'll add some cute pictures of Camden for everyone's enjoyment though. These are all from his one year photo session.
I was randomized into the control group. Boo, not what I was hoping for. I really wanted to get the Herceptin, but there is no change in my original protocol so we will "just keep swimming."
I'll add some cute pictures of Camden for everyone's enjoyment though. These are all from his one year photo session.
Sister Time
My sister, Kristen, goes to school in Wyoming for dental hygiene (brush your teeth people) and had a spring break, so she made the long trek to Minneapolis to visit. I love having her around. She is opposite, yet similar to me. Physically you know we are sisters. With the Sam nose and stature, but your personalities are very different. I am very Type A take control and Kristen just kind of goes with it. She has been there for me when I call her because I miss our brother Jason and she has been there with me to rejoice getting engage, having a baby, and getting into nursing school . I love her and I am so happy we have each other.
She came into town on Saturday and instantly we began our love for gastronomy by going out to eat. And then a NAP, because seriously doesn't love a good nap. She would attend church with us and make our weekly Target run with us and then honestly I think we took another nap.
Monday we started off getting things done. I needed a wig. Since I am going to lose my hair I needed something to cover my bald head. I don't know if I will ever feel comfortable with just a bald head, but I don't know yet if I will be comfortable sporting a scarf or a wig. We took off to a wig ship in Anoka, but once we got there we realized it was closed on Mondays. So after a quick Google search we found a place in Har Mar mall that had wigs and other hairloss type stuff. A little further than I would have liked to drive, but in the end it was worth it.
We were greeted, by the two cutest middle age women. There were about three full shelves and then three additional rolls full of all kinds of colors and cuts and textures. I didn't know where to even start. The one woman on the phone said "try the opulence, she is prefect for the opulence!" We sat down and went through wig basics and started trying things on.
Monday we started off getting things done. I needed a wig. Since I am going to lose my hair I needed something to cover my bald head. I don't know if I will ever feel comfortable with just a bald head, but I don't know yet if I will be comfortable sporting a scarf or a wig. We took off to a wig ship in Anoka, but once we got there we realized it was closed on Mondays. So after a quick Google search we found a place in Har Mar mall that had wigs and other hairloss type stuff. A little further than I would have liked to drive, but in the end it was worth it.
We were greeted, by the two cutest middle age women. There were about three full shelves and then three additional rolls full of all kinds of colors and cuts and textures. I didn't know where to even start. The one woman on the phone said "try the opulence, she is prefect for the opulence!" We sat down and went through wig basics and started trying things on.
Awful, awful cut
Complete joke
Not too bad, but it wasn't me
And the winner is . . . . .
First, please ignore my face. We were having fun. If you have seen me recently, this is my hair cut. When we text it to Sam he had to ask his coworker and my friend Melissa if that was my hair or a wig. It's so real and looks like it coming right out of my head. Later in the week we picked up a pretty silk scarf that I will have to play with.
I still need to decide if I'm going to go to the salon and have her do an intermediate cut. I love my hair, I've always had nice hair, so it's really been emotional for me to go through the thought of losing my hair. The ladies at the shop got me set up with wig shampoo and conditioner, a wig stand, and a head cap. I was set! Overall it was a great experience.
On Tuesday I just had a dental appointment and Kristen had a class conference call (she does some classes through another school for her bachelor's degree) so It was going to a short day. This was also our brother's birthday, so even though I think we both knew how said we were, we pushed through and got things done. Kristen wanted to come watch get my teeth cleaned because she is weird and into that teeth stuff--yuck! But I'm still in the no cavity club. We then went to lunch at Punch Pizza. Oh yumm, buffalo mozzarella and san martzano tomatoes and fresh basil, melt my heart.
We then decided it was time for some pampering. Pedicures!!! Who doesn't like their feet and legs rubbed. I could care less about the polish, I just like the massage. Because I don't have any lymph nodes on my right I'm not supposed to manicures. Kind of stinks, but if I go to a really nice place with sanitized tools I would be ok. But pedicures are still game. A couple hours of our time, laughing at the male nail tech hitting on Kristen. Hilarious.
Wednesday would be her last day here and as we had to planned, we went to the Minnesota Science Museum to see the Body Worlds exhibit. If you like anatomy and physiology you will love this exhibit. It is amazing to see the dissection of human bodies down to such a raw form. The reproductive exhibit is my favorite. It is neat to see a fetus from nearly conception to full term. How they grow and develop is truly a miracle.
We ended her trip with dinner at home and a few hugs. I miss her. I wish we were closer, but Facetime does wonders.
Scan Results
This is going to be a short one, because really there isn't that much to say. I had all of those scans done about a week ago. Amanda, Dr. T's nurse called late last Monday night to tell me . . . . .
ALL SCANS ARE NORMAL!!!!!!!!!!!
We now assume that all the cancer is gone and the chemo and radiation are preventative to get rid of any floaters out there. Praise God, praise medicine, praise my husband, praise my son; I needed this boost of positive information to keep going.
Sunday Worship
I know, I know I really behind on blog posts, but I promise I'm almost caught up. Last Sunday we made our weekly trip to Northwood Church. It's our time to sit together and worship in song, prayer, and thought. We have a great pastor who is so eloquent with his words. He is currently doing a series on "Crosswords"--words that the cross represents. This last week was "Suffering". Another way that God is saying "Hey, Nicole, I'm here. I'm alive, and I'm listening. I knew this would be an impactful message for me right from the start of the worship songs.
The worship team is lead by Travis (shout out to Travis, he introduced us to the church) and a group of incredibly talented musicians, including his wife, Sarah, who has been recently playing the cello. This was a new song they were introducing to the congregation called "Wake Up".
The worship team is lead by Travis (shout out to Travis, he introduced us to the church) and a group of incredibly talented musicians, including his wife, Sarah, who has been recently playing the cello. This was a new song they were introducing to the congregation called "Wake Up".
We have seen the pain
that shaped our hearts
And in our shame
We're still breathing, 'cause
We have seen the hope
of your healing
Rising from our souls
is the feeling
We are drawing close
Your light is shining through
Your light is shining through
Wake up, wake up, wake up
wake up all you sleepers
Stand up, stand up
Stand up all you dreamers
Hands up, hands up
Hands up all believers
Take up your cross, carry it on
all that you reveal
with light in us
will come to life
and start breathing, 'cause
here we stand our hearts are yours,
that shaped our hearts
And in our shame
We're still breathing, 'cause
We have seen the hope
of your healing
Rising from our souls
is the feeling
We are drawing close
Your light is shining through
Your light is shining through
Wake up, wake up, wake up
wake up all you sleepers
Stand up, stand up
Stand up all you dreamers
Hands up, hands up
Hands up all believers
Take up your cross, carry it on
all that you reveal
with light in us
will come to life
and start breathing, 'cause
here we stand our hearts are yours,
Lord not our will but yours be done
The last line that I bolded was so impactful. The haunting tune and lyrics culminating with a reminder that WE are not in control. This is one of my favorite lines of the Lord's Prayer, as well. I know the Lord will talk me through this and at times he may even need to carry me through this. I can see the Lord working in so many aspects my life right now. Like I've said before, I believe in the power of prayer and if you can bring us into your prayer it would be appreciated.
As the sermon went on Pastor Brian found some very inspirational verses for the congregation to hear. There was a verse I wrote down and one quote (Brian, you know this quote :) ).
These trials will show that you faith is genuine.
It is being tested as first tests and purifies gold--
through your faith is far more precious than mere gold.
So when your faith remains strong through many trials,
it will bring you much praise and glory and honor on the day
when Jesus Christ is revealed to the whole world.
1 Peter 1:7
When you are going through hell, just keep moving.
Winston Churchill
(image: Google images)
Both are so telling of the suffering I am going through. This the path that has been set before me and I must keep moving. Or in the words of Dori from Disney's Finding Nemo--Just keep swimming!
(image: Google images)
We left church that day to shake Brian's hand as usual. He made a point he was happy to see us and that he was preaching for me today. Trust me Pastor, your words were heard. I know that God used you to speak to me on that Sunday morning.
Wednesday, March 13, 2013
Imagine Dragons--A Night to Forget
Sam and I bought tickets to the Imagine Dragons show a long time ago. We lucked out on mezzanine level reserved seats at the Varsity Theater near the U. Needless to say, this was the exact thing I needed the doctor ordered. We needed a date night to say the least. Something to blow off some steam and spend some time together.
Auntie Jayme and Uncle Ted came to watch Camden. Jayme was excited to take him to Space Aliens for dinner. Don't judge. It's kid friendly with great food and really good drink specials. Camden loves to look at the outer space ceiling and see the Alien mascot visit from his UFO. Well, Camden his the jackpot!
Auntie Jayme and Uncle Ted came to watch Camden. Jayme was excited to take him to Space Aliens for dinner. Don't judge. It's kid friendly with great food and really good drink specials. Camden loves to look at the outer space ceiling and see the Alien mascot visit from his UFO. Well, Camden his the jackpot!
600 tickets!!! Just by being a toddler and pushing buttons. He got to take home a nice green stuffed alligator.
Sam and I started out at our night at Stub and Herbs. Hands down the best burgers and beer selection we have come across. Thank you to my co-workers Katie and Sarah for showing us this place before the Gopher hockey game. The burgers come on this delicious pretzel roll and the craft beer selection is amazing. I indulged in the spicy peanut burger and Sam had the inferno burger. Clearly, we like spicy food in our house.
The show was opened by Nico Vega- indy rock with heavy beats is what Sam and I came up with, but I liked her a lot. She had great presence and an amazing voice. Then up next was Atlas Genius out of Australia. I love their song "Trojans".
And then . . . the main event! Imagine Dragons- they are so awesome. Their music is . . . crap, I don't know how to describe it, but I recommend "Radioactive", "Bleeding Out", and honestly the rest of their album because it's that good. We sat by a family whose brother taught the lead singer in high school and a couple of girls who ended up with back stage passes from meeting the key boardist in a coffee shop before the show.
This was the first night since January 22nd that I felt normal. I forgot about cancer, scans, tests, results, studies and hospitals. I got to spend the night with my amazing husband, sing to great music, and get lost in the show. I loved it. I loved it.
A Day of Tests
My Friday started out bright and early. Really bright and early for me these days is anything before 10:00am. I'm still pretty stiff from surgery that getting up and moving takes a while. The tissue expanders feel really heavy so after laying down for 8 hours, I feel like I've had an elephant sitting on my chest all night. My range of motion is improving, but it takes a while to get limber.
Sam and I had to go to chemo class. We got a tour of the clinic and treatment rooms and then had to watch a video of the side effects of chemo. The video was long and boring. I get why they do it, but with this cancer stuff people seem to repeat and repeat and repeat information. Sam was pretty impressed with the infusion room. There is wi-fi, tv, coffee, tea, snacks and massage chairs. He silently tapped me on the shoulder and asked if he could come to chemo with me every time. They really do like you to feel at home.
Sam and I had to go to chemo class. We got a tour of the clinic and treatment rooms and then had to watch a video of the side effects of chemo. The video was long and boring. I get why they do it, but with this cancer stuff people seem to repeat and repeat and repeat information. Sam was pretty impressed with the infusion room. There is wi-fi, tv, coffee, tea, snacks and massage chairs. He silently tapped me on the shoulder and asked if he could come to chemo with me every time. They really do like you to feel at home.
(image: Google images)
I had to wait after the class to get a few labs drawn for the clinical trial and Sam had to get off to work. I was on my own for the day. There was really no sense in having Sam wait in waiting rooms all day. After a quick blood draw I was on my way across the street to the hospital.
I was signed up for a PET scan, CT scan, EKG, and echo. I headed to the PET scan first. I really don't feel like I was given enough information about this scan. It was nice to see a familiar face though. The gentleman that checked me in was the same person who admitted me on the day of surgery and the rad tech who assisted on my injection prior to surgery was the same person . Susie the rad tech took me back to get changed into some killer PJ pants.
(image: be jealous)
Ok, ignore my post partum body, but who wouldn't want to document this. I was taken back to a holding room where Susie started an IV. Luckily we could leave this IV in all day for my other tests as well. Susie then brought in the radioactive injection. She was dressed in hazmat gear, carrying a lead lined box, and a syringe inside a tungsten cover. Crap--what are they injecting into my vein.
Then I had to sit . . . for 50 minutes. Yes, you read that correctly, 5-0 minutes. All that was in my holding room was trashy magazines. Not bad you think, no? Oh no, these were from June of 2012. Nearly 1 year ago. But, the time passed quickly and before I knew it Susie was back to get me and take to me to the scanner.
The scan itself only lasted about 20 minutes. The tube was small enough for my claustrophobia, but big enough I didn't have a complete freak out moment. I made it through test number 1. Susie, then took me down the hall for my head CT. I was quickly taken back. I didn't realize how quickly a CT is done. Not even 5 minutes and the first part was done. The tech then came in and put the contrast through my IV. She warned me it would make me hot all over and then make me feel like I was going to pee my pants. I thought, oh sure, we'll see. We were having a conversation because we had to wait about 10 minutes for the contrast to absorb in. All of a sudden, I felt this overwhelming hot feeling and a sudden urge that I had just wet my pants. Don't worry, I didn't pee myself. The sensation went away as quickly as it had come on and the tech started the scan again. About 5 minutes later and I was done with test number 2.
Then on to the heart hospital for the remainder of my tests. The heart hospital is attached, but is a much newer building. Most was endowed by the Pohlad family who I'm quickly learning is the Trump of Minneapolis. I was quite early for this appointment so I had to wait quite a while. Finding humor in the situation, there was a lady in the waiting room sleeping. Apparently she was very tired.
This is the humorous part--her shirt said "No Sleep Til BKLN". Hey lady, you're only in Minneapolis; WAKE UP!!
I called back for my echo shortly after this photo--and laughing to myself. The echo was really neat. I got to see the blood flow and the valves working as the heart pumped. The EKG lady came right into the room to finish things up. I think it took her longer to put the leads on than it took to do the test.
I was finally done. 6 hours later. I was so tired, but Sam and I had a date that night so I hurried to get Camden and head home.
Clinical Trials
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.
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.
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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