My blog on LillyPad with Eli Lilly Oncology

Well summer is full swing at our house.  The kids are busy running in every direction with work, sports, friends, etc.  I love summer...even though it is still busy, it is a little more relaxing minus all the school activities. 
Levi & David took me to Treatment #31.  It was nice to spend the day with them.  And I am happy to report that everything is still looking stable for me!

 I recently had the opportunity to work with a team from Eli Lilly Oncology that shared a blog post on LillyPad that we worked on together. 
Please check it out at this link  Chapter Two: My Metastatic Story

Hope everyone has a great summer!!
Thank you for all of your kind words, thought and prayers for my family!








Embrace the Suck

I had treatment #30 on Wednesday and met with my oncologist.  The lumpectomy went well...and the great news is that the margins were clear which means...they were able to remove the entire tumor, and it did not appear to be spreading.  Thanks Shelly for hanging with my all day!


 I just wanted to take a proud moment and share this with you all. This is my 16 year old son for his speech class final. My video got cut off because I ran out of space on my phone.. At the end, he mentions that Metavivor give 100% of their donations to Metastatic Breast Cancer Research. And then I whispered into the phone how much I love this kid. Stupid phone!
But Levi gave me a new quote...Embrace the Suck!!
https://youtu.be/RxDplErJIbY

 Also, check out this link to a video blog my Oncologist at IU Health Simon Cancer Center shared before Mother's Day. In it she shared my blog post "Their Youth is Ours" about being a mother with Stage IV Breast Cancer.  I feel so fortunate to have such an amazing and caring doctor.
On Mother's Day, Let's Think About Our Patients



Cancer is Mysterious

     Well, you know you have had too many surgeries when you recognize the hospital staff, and a few of them even recognize you.  Yesterday was long day, but I am happy to report that the surgery went well.  Ben and I left for the hospital around 8:30 am. We were quickly checked in, but my surgery started more than an hour past the scheduled time.  My parents and our hilarious nurse kept us well entertained.  The surgery itself wasn't too long, but we did not end up getting home until after 5:00 pm. 
     When my breast surgeon came in to see me beforehand, she was surprised to find that my tumor felt smaller.  After surgery, she confirmed that it was definitely smaller than it was 10 days ago.  We won't have any real answers from Pathology until Friday. 
     This tumor is a bit of a mystery at the moment.  It grew rather quickly. The biopsy showed that the tumor was invasive ductal carcinoma with Estrogen+ receptors, but HER2- receptors.  This is where the mystery starts because the breast cancer in my bones is Estrogen+ and HER2+ receptors.  This explains the tumor's sudden growth.  My Kadcyla tri-weekly treatments are specifically for HER2+ cancer.  The good news is that the treatments are still working, as my oncologist says my bones have remained stable and look to be healing. 
     So for now, we will patiently wait for the Pathology results and celebrate my successful surgery!  Thank you for all of your support, kind words, and prayers.  Could this smaller tumor be power of prayer?  I like to think so.

Calling Team Lori...The Unexpected Turn in the Road

     Just when you think things are going smoothly again, along comes the unexpected turn in the road.      
     After switching treatments in November, the cancer on my bones was responding well to Kadcyla.  It was a great relief because Kadcyla is a newer drug and is working effectively for many women.
     Less than two weeks ago, someone bumped my side.  As I went to rub it, I was surprised to feel a lump in the lower outer area of my breast next to my implant. So last Tuesday, I got a CT Scan that showed a tumor measuring just under 2 centimeters.  
     Last Friday, I had a biopsy, which happens to be a short story in itself.  As the resident prepared to stick the needle in, I asked him how many breast biopsies he had performed.  He replied, "You are my FIRST!"  I thought, "Okay, well, let's just get this virgin biopsy going then!"   Lucky for him, I have had many biopsies, and I was able to patiently watch on the ultrasound as he maneuvered the needle around to get the right spot.  I guess someone has to be the guinea pig once in a while, and I have the bruising to show it!
     The Good News...the cancer on my sternum and rib are stable, my treatments are working well on them.
     The Bad News...the tumor is breast cancer of which the treatments were not working.  I am now scheduled to have surgery on May 2 to have it removed. And I believe about four weeks after that, I will begin some radiation.
     Just a bump in the road! :)
     More to come...



Please keep my family in your prayers as we venture on this new stretch of road. I need my TEAM!!

Exhausted after Treatment #29
and putting in an 8 hour day at the hospital!
But no worries...we had a good time!





Their Youth is Ours

My Stage 4 METS Sisters with their beautiful children
     My phone rang around 10:00 am on a cold January morning. I was home, sitting in my recliner, feeling miserable from the Kadcyla infusion I had the day before.  The caller ID showed the school.  I guessed that one of my kids must be sick.  However, when I answered, it was my daughter.  With a panicked tone to her voice, she was checking to see if I was okay.  She thought she had seen my car pull into the hospital while she was sitting in class.  After I assured her I was home and fine, I hung up the phone, completely devastated.      You see, when we are broken, our children are broken too. But their youth if ours, so we try to keep their lives as normal as possible. We continue to give them the best that we can. Life as they knew it will never be the same because cancer is now a part of their story. Our illness is an everyday fact of their lives. 
    
      There is no manual to help us guide our children through this. So we stumble through the hard days, the difficult discussions, and the unanswerable questions. There is no right way or any kind of clear path to walk with our children. Our only choice is to walk along beside them, gripping their hands tightly.
     You fear...have we shared too much with them?  Have we not shared enough with them?  There is a fine line each family going through this must learn to navigate.  It's never easy.
     When we talk about my Stage 4 Cancer, we have to carefully consider each child's unique way understanding. Their ages, as well as maturity levels,

affect what information they can understand and handle.  We do not want them to be afraid and live with worry...but we cannot spare them from the truth. We need them to trust us, that we will be always truthful with them.
      Children are usually keen to changes and stress in their surroundings. They know something is wrong, even if they are not quite sure what it is. They will listen to conversations seeking information. Older children will likely to take pieces of what they know and search the internet for answers...answers that will most likely not be the truths.
     The truths are hard. And children worry, so as we share the truths, we try to hide our fear. They need to know what to expect. They ask difficult questions that breaks your heart to answer. I have promised my children that I will let them know when there are changes...and when my situation might take a turn for the worse.
    
I now have friendships with many women with Stage 4 Breast Cancer. Cancer has ripped the rug to our futures out from underneath us. No matter what stage of life we are in, we all are struggling with this. Mary dreams of watching her children raise her grandchildren, while Leanne just dreams of seeing her children get married and meeting her grandchildren.  Carla dreams of seeing her children graduate from high school while Shelly just dreams of seeing her children through elementary school.  Holly dreamed of celebrating her son's 5th birthday with him, while Jenny dreamed of just being able to have a child.

  Please pray for our children. Cancer has clouded the images of their future.  They long for normal lives...days where they don't have to see Mom sick, days where they don't have to worry about if cancer will steal her away from them, days where they don't have to worry about if a cure will be found.  Pray that they will be able to share their pain and fears with others...but most of all, pray that they will be able to find peace.


These are my heroes and their youth is mine.  They bring me joy, hope, and laughter each and every day.  I pray that my cancer can teach them more about LIFE than it does about death.  Pray for me, my husband, and my friends...that we may have the strength that it takes as a mothers and fathers to give our children the peace they need.


The Bell Started to Ring

The bell started to ring and suddenly I woke up. 
Yesterday, I was receiving treatment #24, my 4th dose of Kadcyla, when I heard the bell start to ring.  The bell hangs quietly in the main area of the pod B infusion center anxiously waiting to be rang by those who have finished their chemo or other treatments.
Today, it was a woman in her 50's with a beautiful purple and teal scarf on her head.  She was smiling from ear to ear as her friend took a picture of her holding her "Last Chemo" sign.    She was so happy, looking so relieved to finished.  I remember that feeling. I rang that very same bell once as I finished my last chemo.  I remember being so very thankful that it was over. 
The bell started to ring and suddenly I woke up. It wasn't sleep that it woke me from...I had just infused a bag of steroids.  But it woke me from a daze...a daze I seemed to have fallen into since I had to switch treatment plans in November.  I was so happy to watch this woman ring the bell, and at the same time so sad because ringing the bell is not in my horizon unless a cure is found. And as I clapped for her, I realized that it was time to bounce back.  The cancer suddenly spreading and requiring a treatment change was devastating to me, a setback that I wasn't prepared for. I realized that I hadn't even written a blog post since then. 

So here I am!   I return!  Here's what I have been up to...

 My friends Brandi & Becky took me to treatment #22 the day before Thanksgiving.  A day full of laughter!

 I was co-chair for our church's Jubilee Christmas site.  We were able to provide Christmas gifts for ten families with a total of 30 children.  It was a wonderful feeling to have a gym full of volunteers and parents wrapping gifts while the kids did "cookies and canvas" paintings of snowmen.  Great day!

 My dear friend Dawn took me to treatment #23.  We have been friends since we were 15.  It was so great to spend the day together reminiscing and catching up on our busy lives.

We hosted Ben's family for Christmas Eve.  I love having this in my home, 34 of us spending the day together, eating drinking, playing games, and watching 19 kids/young adults open gifts. 

 Then we changed things up this year.  Christmas morning we jumped in the van and headed to Orlando.  We spent the week with my brother's family and my parents to celebrate their 50th Wedding Anniversary.  We had a wonderful time, and the weather was beautiful!  I quickly learned that we weren't the only ones who thought it would be great to go to Disney this winter break. We shared the Magic Kingdom with over 100,000 other people causing the park to shut down the gates at 1:00 pm because it was at full capacity!!  Talk about a lot of people!

 The bell started to ring and suddenly I woke up, and it was 2016.  A new year...a new year to show gratitude and live each day to the fullest! So let's do it! Happy New Year!

Calling All Team Lori Members


      When I was diagnosis Stage IV in August of 2014, I started a targeted treatment of two infusions, Herceptin and Perjeta.  Unfortunately, the cancer cells eventually find their way around treatments, making them no longer effective. So after 14 months (20 treatments), my cancer cells have found a way to wake up and start growing again. No worries though, it appears to be just a subtle growth. 
     So I have started a new targeted treatment plan.  I will now be getting one infusion of Kadcyla (TDM1) every three weeks. This is a relatively new treatment that got FDA approval in 2013.  This treatment is Herceptin with a chemo drug in it.  So needless to say, I can already tell a difference in the side effects...FATIGUE!  This drug also calls for a little higher maintenance work on watching blood counts and staying healthy and well.  But we can handle that!
     
So I need my TEAM! Please pray that my next scan in December will show that this treatment is working and knocking those cancer cells back out!
Thanks everyone!!

Shattered Pink Windows...My Video Story

     Every once in a while, we are presented with an opportunity to let others hear our voice. An opportunity to share our thoughts and our concerns.  A chance to ask others to consider our message.
     Komen of Central Indiana gave me this opportunity to share my voice in this video (below). It was shown at their Pink Tie Ball where I was also given an opportunity to speak to the audience.  All of this giving me a chance to share with others about the importance of research to the some 150,000 of us facing stage 4 breast cancer.

     As October approaches us...please remember that behind all of the many pick ribbons you will see for next 31 days, are faces of women who are dying everyday. Women whose lives depend on the next successful research drugs.
     Pink helped us raise awareness...now pink needs to help us find the cure.
     I ask you to help us to keep pink ribbons from becoming just a way to decorate like major holidays.  We cannot "Shop for a Cure." Please do not get caught up in the pink that is helping businesses make money for themselves. Consider if it is a pink purchase that is truly giving funding to research.
     Yes women diagnosed with early  stage breast cancer are walking back into their lives cancer free...and this is awesome! I was once one of those thankful women. But those of us with stage four, we gaze through shattered pink windows as we continue to face our mortality. 

I continue to dream of the day that we can hear those words...
We have the Cure!


Thanks you to all who give me support, strength, and love everyday! 




365 Days

     365 days.  They seem to go by a little quicker each year that we get older.  So much so that I have often joked that I wondered if by the time you reach your seventies, do you feel like you are Christmas shopping all year long?  Usually the 365 days of the year would come and go for me without much thought...often overlooking days at a time just looking forward to the next exciting event.
  
     365 days ago my second oldest son, Luke turned 16 years old, but it was also the day that my oncologist held my hands as she told me my cancer was stage 4 and had metastasized to my bones.  It was the day that my life forever changed, as I was forced to face my own mortality at 44 years old.  It was the day that I had to change my already hectic crazy schedule to fit in treatments and the following side-effects every three weeks. It was the day that I decided that every single day would have to count now.  Every day was a gift.  Every day was a blessing.  Every day was another day with my husband...another day with my kids...another day to do something good.

     At my July visit with my oncologist, she told me it was time to schedule scans for the next visit.  The words barely came out of her mouth before scanxiety took over. You see, everything can change in an instant once those scans are read.  You teeter-totter between your horrible fears of them finding the cancer has spread and your anxious feelings of relief if they do not see anything new.  No matter how hard you try, you are consumed mostly by the fears that could change your life in an instant. 

   But 365 days later, I am elated to share that my scans showed no new lesions and the existing lesions actually appear to be smaller. This makes the treatments every three weeks worth it!  All the exhaustion, the aches, the stomach issues,  every little side effect...all more dealable with the gift of time...sweet time. 
Happy 17th Birthday Luke!
Moving on to the next 365 days.
Make them count!
Watching to sunset in Florida with Jake before he headed off to college. 


My Peaceful Place

     Think about a peaceful place...a place that surrounds you with warmth and comfort, a place where you feel safe to relax and be yourself.

     Mine is located on a Lagrange County dirt road, surrounded by fields and pastures, in the heart of Amish country. There along a mile stretch of country road is a weathered white farm house with a century old dairy barn and a working windmill spinning in the warm summer breeze. The colorful garden lines the driveway with an array of beautiful flowers and all types of vegetables in perfectly straight, weedless rows, much like a picture from a magazine. The house is large with many different sections of living areas added on over the years. There is also a smaller "Dawdy house" attached, which means Grandpa's house in Pennsylvanian Dutch. 

     My dad grew up in the main house, and years later, one of my aunts raised her family there, while my grandparents moved into the Dawdy house. My dad and I recently found out that they were going to tear down this house to build a new one, so his family was invited to come walk through one last time. While we hated to see the house go, we were excited to go back to walk through it for the first time in almost 20 years.

Sitting on the front steps 2015

    This is me sitting on the front steps of the Dawdy house, the very door where you could always find my grandmother standing as we pulled up.  She had 66 grandchildren but she always had a way of making you feel like you were the most special guest at her house. 

Found a dress that fits 1981

     Growing up in the city of Indianapolis, I was fascinated with the Amish country life.  My grandparents were Old Order Amish which meant they did not have electricity, cars, or even phones. Horse & buggies and kerosene lanterns were just a way of life. I couldn't wait to get to the farm each summer for our annual family reunions.  By the time I was 10, I would go up to stay for a week during the summers.  The minute I got their, I would dig through my cousin's Amish dresses to find some that would fit.  I would happily get up at 5:30 am to help hand-milk the cows with my cousins. I even thought it was great fun to mow the lawn with a reel push mower (no motor).

Inside the dairy barn 2015

The bedroom just I as remembered 2015

     As I walked into the house for this last time, it smelled just as I remembered it.  The smell of the kerosene used for the lights was like a soothing scent of a calming oil. As I walked into the upstairs room, where I used to stay, the sun was shining through the window...everything just as I remembered it...peaceful.

      It all brought back peaceful memories of the time I spent with my grandmother, helping her with her garden and in the kitchen. She was a quiet and gentle woman who had lived a hard life, but you wouldn't know because she never complained.

     My grandmother was the firstborn of eleven, with only three of her ten younger siblings surviving. My great-grandmother, Lydia lost five infants shortly after their births. Then in the spring of 1923, Lydia had a set of twins. She had pneumonia, and died after childbirth. Sadly, the twins both died within three days. At twelve years old, my grandmother had experienced seven funerals in her home for her mother and her siblings. She had to grow up in a hurry as she became responsible for her three younger siblings.

    Her story is one of amazing strength.  She suffered so much loss early in life. She went on to have eleven children of her own leading to 66 grandchildren. She kept all of our birthdays on a neat handmade one page calendar hanging in her living room.

Summer visit 1982

    We spent many hours together in the summers I visited her, as well as 15 years of writing letters to each other, and it wasn't until several years after she passed away that I learned of her childhood. Of course now, there are so many questions I would ask her if I could. But I feel so fortunate for the time I was given with her.  And I am thankful for my final visit to the farm.  Even though she hadn't lived there for nearly twenty years, it felt just like it did all those years ago...peaceful. 

Everyone has struggles in their life, how we choose to live the rest of lives gives us the strength to overcome.

David and Jake came with me for Treatment #16. They went to buy Jake's text books and came back with a Coke with my name on it. :)  Enjoyed spending the day with them!

Ain't Nothing Gonna Break My Stride

     Today was Treatment #15, and I thought I would write about what is going on to catch everyone up. It has been 10 months since my Metastatic Breast Cancer diagnosis.  I haven't had any new scans since March where the last scans showed that everything was stable. (We like stable!)  I currently do not have any future scans scheduled as I do not have any severe bone pain at this time. 

Hugging a blanket from the new blanket
warmer I was able to help our local
Oncology Department receive!
     I guess that I couldn't imagine a day that I would get used to going in for infusions and shots every three weeks, but today I realized that it is slowly happening.  I will continue to have the Perjeta and Herceptin infusions every 3 weeks Xgeva (bone strengthening) shots every 6 weeks and Lupron (reduces Estrogen levels) every 3 months. Today, I got all four. 
 
     On June 14, we had the Women's Fund Afternoon Tea.  I am the Foundation staff person for the Women's Fund, and this is the largest event I work on all year.  We served over 200 women and girls tea and hors d'oeuvres while sharing the work of the Women's Fund and enjoying our local Irish dancers.  I took a moment to share my story and information about MBC.  It was an enjoyable day with some amazing women and girls from our community.
 
     Then on June 20, I was the Honorary Survivor of our local Relay for Life.  It was an honor to represent survivors in our county as I cut the purple ribbon and led the first walking lap.  Again, I was given an opportunity to share my story and information about MBC. 

     What's next?  Well the calendar remains full.  I am spending some time with the kids while they are on summer break.
     I am enjoying learning about advocacy work as a Hear My Voice Outreach volunteer for Living Beyond Breast Cancer.  We have an exciting social media campaign to watch for in September. 
     I am also doing an online writing workshop called "Writing the Journey" which I am really enjoying.

    Thank you for your continued prayers. I thank God everyday for the gifts of love that surround me & my family!




 My Relay for Life banner hanging on our courthouse square in town that my awesome friends had made for me!!  Love you girls!

Lori or Jimmy Fallon...Who Delivers A Better Commencement Speech?


Remember...
So here it is...my commencement speech for Jake's high school graduation!  What?!!?  If you didn't know...don't worry, hardly anyone knew until the day of graduation. 
What an honor this was for me!  I am so thankful that Jimmy Fallon did not accept his invitation because his might have delivered a better speech ;)
Congratulations to Jake and his awesome classmates!
 
I plan to do treatment #14 tomorrow on my way home from a Foundation regional meeting on the north side of Indy. I am going to go to the IU Health Springmill Infusion Center...hoping to catch up with a few great nurses there!  The last time I went there was for my first round of chemo in the spring of 2013. 
 
 
 
 


2015 Seemed So Far Away

     I remember the day I found out I was pregnant. Ben and I lived in a cute little duplex in the small town of Pendleton, Indiana.  It was early December 1995.  It was cold enough to snow outside but warm enough that I didn't mind walking to the grocery that evening. We only lived a couple blocks away, and we needed a few things for dinner. I remember as the biggest snowflakes fell from the sky, all I could think about was how excited I was to have this new life inside of me. As I happily strolled along, all I could think about was the family Ben and I were about to create! We were so fortunate as we went on to have four more children in the next seven years.

     Where did the time go?  How did 18 years go by already?  When Jake was born and we realized when he would graduate from high school, 2015 seemed so far away! It wasn't even the 2000's! No one was carrying around cell phones, and we didn't even own a computer yet! Suddenly here we are...planning a graduation party and planning for his move to IUPUI. 
     This has been a very emotional time for me as I think of my other loves and pray that I may be here for their graduations too. And as I looked back through all of our pictures to pull some out of Jake for the graduation, I was flooded with beautiful memories. 
      I know that he will do great, but it is hard to let go. I think as mothers, we feel almost a little torn, as we are so sad they are leaving, but at the same time so excited for them to enter the next chapter of their life. 
     Enjoy the time you have with them...time is so precious!
    
     Jake spent the day with me Wednesday at the IU Simon Cancer Center which is on the IUPUI campus.  He went to the student advisors office and then stopped to get himself a couple Jaguar shirts while I saw my doctor.  Then he met up with me for Treatment #13. After my infusions, we went to go check out the apartment he is going to live in next year.  I am thrilled that he will be living just a couple of blocks from the cancer center. 
Congratulations Jake! 
I am so very proud of the young man you have become...
I love you!

108 Women Every Day



Imagine 108 women your in life. It might sound a bit challenging at first, but if you actually wrote their names down, it would only take a couple minutes. Or you could look at a list of your Facebook friends and probably easily find 108. Think about what that list would look like. Who are they?  They are mothers, daughters, grandmothers, granddaughters, aunts, nieces, friends, co-workers, mentors, and neighbors.  Think about all of the roles this group of women have in their families, their communities, and even your life. Think about how many lives are impacted by just your list of 108 women.

            Now imagine that 108 women, like those on your list, die every day.  Every Single Day...This country loses approximately 108 women due to Metastatic Breast Cancer because there is no cure. 

            While attending the Living Beyond Breast Cancer’s 9th annual Women Living with Metastatic Breast Cancer Conference in Philadelphia, the women of the “Hear My Voice” outreach volunteers learned of this startling number.  Several of the women organized a die-in in response. 108 women laid down on the floor together hand in hand to remember those who have died and to honor those who will. 

We so badly need a cure so we do not continue to lose 108 great women every day!How can you help?  Show your support  for women and men with Metastatic Breast Cancer by giving a donation to METAvivor for MBC research.

Make a Donation

 
#108everyday
#MetsMonday
#dontignorestageiv
*The 108 figure comes from the 2013 American Cancer Society Breast Cancer Facts and Figures. The number of estimated deaths from metastatic breast cancer in 2013 was 39,620. Divide that by 365, and you get 108. The number of estimated deaths increased to 40,000 in 2014.
 
   

LBBC Women Living with Metastatic Breast Cancer Conference


I was blessed to spend this last weekend at the Living Beyond Breast Cancer’s (LBBC) ninth annual Women Living with Metastatic Breast Cancer Conference in Philadelphia.  It was an incredible experience as I met women from all over the country who were like me…women who are sharing the same feelings of hope, feelings of fear, and feelings of uncertainty facing the realities of Metastatic Breast Cancer (MBC). 
As I sat on the plane, I thought about how lucky I was to be able to go this conference. But I am not going to lie, I was a little nervous about what I was heading into.  I was a busy 44 year old mom of five who had walked into this mean diagnosis only eight months ago.  I was suddenly going to be surrounded by women who have lived with this for several years, and some for many years.  Women who have had multiple reoccurrences.  Women who have had cancer in their lungs, on their liver, up and down their spine, and endured large amounts of physical as well as emotional pain.  Was I really ready for this?  Was I ready to take a glimpse into what was most likely going to be my future? Was I ready to create friendships with others that were going to find that their cancer had spread?  Was I ready to create friendships with others whom I would lose?
But yet, I had a burning anxiousness to meet these women, to meet my sisters, to meet the others who had been thrown onto the same sinking ship with me.  Could we together find ways to keep the ship afloat?  Could the support we give each other be what I was needing?  I was about to find out!
I was invited a day early to be trained in the first group of women in LBBC’s "Hear My Voice" outreach volunteer program. There were 32 of us ranging in age from 24 to 68 years old. (Yes, there are women with MBC in their twenties!)  The training provided us tools to help better understand the MBC community.  We were given information on available resources to help us connect with others living with MBC and help us to educate the public. I was thrilled to be in a room with such strong voices and an outburst of thoughts and ideas. Everyone so unique in their own way, but all sharing the same disease and the need to be heard.
Saturday morning, I entered the large conference room with several of my new friends that I had met the day before. We chose a table near the middle of the room.  As the meeting began, they announced that there were over 300 women and men with Metastatic Breast Cancer in the room. And in that moment, I looked around and found myself in the center of a room full of others like me. I was in a room of women and a few men who were living my nightmare.  Suddenly, I shuttered with chills as I realized that I was no longer alone with this disease.  I was no longer the only person that I knew that had MBC.  They were surrounding me, all ages, all races, from all over the United States. I was so overwhelmed in that moment that my eyes welled with tears.  As the first speaker started, I couldn't hear what she was saying because I could only look at the faces of those around me. I sat and studied many of their faces, wondering how old they were, if they had children, and how they were dealing with it all.  But I then quickly pulled myself together as our speaker, Dr. Minetta Liu was full of insightful information about promising new pathways in treating MBC.
Turns out, I was ready to attend this conference. I am so glad that I was able to go, as it was very eye opening and informational for me. I met some beautiful women whose new friendships are so dear to me.  I hated to say goodbye to them. But with today’s technology, we will be able to stay in touch and support each other. And though there were moments throughout the weekend that were hard to swallow, I walked away stronger. Until they find the cure, the hope and courage of these women will keep that ship afloat.
If you are a woman facing MBC, I encourage you to go to this conference in 2016! 
Thank you LBBC!  I will be back next year!
 
#MetsMonday
#LBBCConf2015
#dontignorestageiv
 



My Decision to Get a Port

     Throughout the 2 1/2 years of my cancer journey, I have had to do a lot of things that I did not want to do...surgeries, chemo, procedures, biopsies, scans, treatments, endless appointments.  But this becomes part of your new life, and you may grit your teeth, shed a few tears, scream that it is not fair a few times, and then you just move forward because you have to. So let me introduce you to my newest life altering decision...Portia.
     To get a port or not get a port...that was the question.  When I had my babies, the nurses always bragged about my veins.  They were nice and plump, easy to get a IV needle into.  Sadly, long term IV treatments damage your skin and veins, leaving them difficult to access. My last four or five infusions involved two attempts to get my IV in. The only good vein left is in the crook of my right arm. Something that never used to bother me, suddenly was making me anxious in the hour before getting stuck. I knew it was time to consider a port.
     Several months ago, my favorite infusion nurse introduced me to the woman in the chair next to me who loved her port. I listened intently as she kindly showed me the bump under her skin and explained how happy she was to have it.  Sounded good, but I wasn't totally convinced yet.
     I continued to fight this port internally for the next several months.  Why was I fighting it? The procedure itself frightened me.  The thought of placing this foreign object in my body was a bit scary as well. But really, the issue wasn't so much the fears as it was giving in. I felt like I was letting cancer chalk up a point.  I was taking a step closer to my uncertain death.
     On my last visit with my doctor, I told her I thought I was ready. Being the amazing doctor she is, she immediately sensed my uneasiness. As she grabbed my hands, I explained that I felt like I was giving in.  She then used a little of that good ol reverse psychology on me, challenging me to look at it as I was the one chalking up the point on cancer. So cancer...you think you are going to mess up my veins and stress me out, well, I won't let you do that...I will just get a port. No more constant needle pricks on me!  I am in control.  This thinking process worked...thanks Dr. Miller.
     So yesterday, I did it.  Let me introduce you to Portia. Yes, I gave my port name. No, I am not crazy.  She is likely going to be with me the rest of my life...we need to be friends.
    Now I know a lot of you are wondering...what exactly is a port?  A port or a portacath is a small medical appliance like the one in this photo above. It is placed in a pocket under your skin and is attached to a long tube or catheter that is placed into a large vein in your chest and ends at your heart. The device has a rubber top just under the skin where a needle is inserted to draw blood or inject drugs such as chemotherapy or the two drugs I receive every three weeks, Herceptin and Perjeta. The procedure took about an hour.  I have to keep it bandaged for 24 hours and dry for a week. After it is healed, I will have a small noticeable bump under my skin on my chest. We tested Portia out after the procedure with treatment #11. It was such a relief to not have to find a good vein in my arms for the IV. I think I am going to like her.

So thankful for my wonderful husband who spent yesterday by my side for treatment #11. I do not where I would be without Ben's love and support, holding my hand through this journey. So thankful God put this man in my life! I'm so blessed!




My New Favorite Word, Stable


Although this was definitely a week full of anxiety... the week turned out to be full of blessings!

    Monday I had a routine CT scan of my chest area. Although I was dealing with scanxiety issues...from what I could decipher from the report, I felt pretty good about it. 
     Wednesday, my doctor confirmed that it was indeed a good scan.  She said that we like to see the word stable on these reports.  So stable I shall be!  This is good to know because, I don't know if you have ever tried to read a radiology report, but they full of terminology that we do not use...ever.  So for you other patients out there like me, who cannot wait the two days for your appointment without looking at the report, the Living Beyond Breast Cancer website does provide a glossary of terms that may help define some of those wacky terms.
     After receiving my relieving news of stability, my friend, Becky, and I went to spend some quality time together in the infusion area while getting treatment #10.  After, we hurried on to my next appointment with my new plastic surgeon.  My first plastic surgeon left the network.  Therefore, I am now seeing Dr. Juan Socas, who, Becky would be happy to tell you, is a quite handsome young doctor from Argentina.  This was just a routine yearly implant exam. I can't believe it has already been two years since my double mastectomy.
  All in all, a good day, a dear friend, and terrific news!

My other good news...
     In April, I am planning to attend the Women Living with Metastatic Breast Cancer conference in Philadelphia.  I am so thankful for this opportunity...giving me a chance to connect with other women who share this disease. 
     When I registered, they were accepting applications for the Hear My Voice Outreach Program. A couple of days ago, I found out that I was selected for this program.  I also received a travel grant to go to the conference plus the full day Hear My Voice training.  I am super excited for this adventure to Philly...so please say prayers for me, that this will be a safe trip, providing support and knowledge to help me continue my journey. 

Next blog...I will introduce you to my new friend, Portia.




Chemo Was Mean To My Nails


     We all know that chemotherapy causes hair loss, but did you know that it also affects your nails?  Many patients are often surprised by the effects some chemotherapy drugs have on their fingernails and toenails. The good news is that this doesn’t occur with every type of chemotherapy, and it doesn't necessarily happen to everyone. 
      So what happens? Chemotherapy tends to cause the nail beds to become discolored. Nails often become brittle and dry causing them to break and crack easily.  As you can see on the right, this is happening to me. Five of my finger nails have starting cracking much lower than I would like. They get caught on everything, and I can't scratch, which makes my skin itch all over just thinking about it!
     Lines can also develop in the nail related to each cycle of chemotherapy. Beau's lines occur as you nail temporarily stops growing. The lines then grow out with you nail. You can sort of see some faint white lines in my nails in this picture. 
     I do feel fortunate though, some people can experience nail loss where the nails eventually lift completely off the nail beds!  Sounds awful...I'll deal with the breaks and invest in a good back scratcher. :)

Today was Treatment #9.  I was able to stay in town for today's infusions.  My awesome sister-in-law Brandi came to hang out with me. So lucky to have her in my life.  

 

any chemotherapy patients face side effects from treatment that are unexpected. One such side effect is changes to the fingernails and toenails. This side effect doesn’t occur with every type of chemotherapy, nor does it occur with every patient. However, those that face this side effect find it challenging and often just as horrifying as hair loss.Nail changes take the forms of lines on the nail, discoloration of the nail bed, and brittleness. Some people experience nail loss where the nail lifts completely off the nail bed. Dry cuticles are common. It’s very important to take care of the hands and feet, including the nails, during chemotherapy. These areas are prone to infection and are often forgotten in the myriad list of chemotherapy side effects.

Read more : http://www.ehow.com/how_2312380_manage-nail-changes-from-chemotherapy.html
any chemotherapy patients face side effects from treatment that are unexpected. One such side effect is changes to the fingernails and toenails. This side effect doesn’t occur with every type of chemotherapy, nor does it occur with every patient. However, those that face this side effect find it challenging and often just as horrifying as hair loss.Nail changes take the forms of lines on the nail, discoloration of the nail bed, and brittleness. Some people experience nail loss where the nail lifts completely off the nail bed. Dry cuticles are common. It’s very important to take care of the hands and feet, including the nails, during chemotherapy. These areas are prone to infection and are often forgotten in the myriad list of chemotherapy side effects.

Read more : http://www.ehow.com/how_2312380_manage-nail-changes-from-chemotherapy.html
Many chemotherapy patients face side effects from treatment that are unexpected. One such side effect is changes to the fingernails and toenails. This side effect doesn’t occur with every type of chemotherapy, nor does it occur with every patient. However, those that face this side effect find it challenging and often just as horrifying as hair loss.Nail changes take the forms of lines on the nail, discoloration of the nail bed, and brittleness. Some people experience nail loss where the nail lifts completely off the nail bed. Dry cuticles are common. It’s very important to take care of the hands and feet, including the nails, during chemotherapy. These areas are prone to infection and are often forgotten in the myriad list of chemotherapy side effects.

Read more : http://www.ehow.com/how_2312380_manage-nail-changes-from-chemotherapy.html
Many chemotherapy patients face side effects from treatment that are unexpected. One such side effect is changes to the fingernails and toenails. This side effect doesn’t occur with every type of chemotherapy, nor does it occur with every patient. However, those that face this side effect find it challenging and often just as horrifying as hair loss.Nail changes take the forms of lines on the nail, discoloration of the nail bed, and brittleness. Some people experience nail loss where the nail lifts completely off the nail bed. Dry cuticles are common. It’s very important to take care of the hands and feet, including the nails, during chemotherapy. These areas are prone to infection and are often forgotten in the myriad list of chemotherapy side effects.

Read more : http://www.ehow.com/how_2312380_manage-nail-changes-from-chemotherapy.html

Time with Friends, My Blond Moments

I no longer have to go to IU Simon Cancer Center every three weeks, so I can do some of my infusions at our local hospital.  During Treatment #8, I got to spend time with my dear friend Becky. Luke & Lydia also walked over after school to join me.






     Do blonds have more fun? Well, I decided maybe it was time for me to find out!  I tried some platinum hair just in time for a fun little vacation with some amazing friends! 

      So you know how you and your girlfriends talk about going on a girls' trip, but that is all you end up doing, talking about it? Well we did it! Stupid cancer started throwing curve balls at me, so we stopped talking about it and planned it!

 
We decided on Key Largo as our destination because while searching breastcancerfreebies.com, I found something I had always wanted to do. Oma's Dolphin Swim Program at Dolphinsplus had a free opportunity for me to swim with dolphins. I absolutely loved this experience, as did my friends.  Dolphins are truly amazing, gentle creatures that are so playful and loving.


     Now I would love to tell you more about our trip, but the rest of what happened in Key Largo stays in Key Largo.  However, I can tell you that we did share some fabulous seafood, fun beverages, our thoughts, our worries, our hopes, our struggles, and of course...
laughter, laughter, and more laughter. 
What a true blessing to spend time with eight of my dearest friends.  These women have give me so much through this journey. They each hold such a special place in my heart.  Love my girls!








Maybe blonds do have more fun ;)