Toni’s Story

Toni is one of my Nashville Breasties! So excited for you guys to meet her!

I found my “lump” myself in 2016. It was small and about the size of a pea. I brought it to my Nurse Practitioner’s attention and she decided I should get a diagnostic mammogram. When I went for the test I was told I did not need a mammogram due to my age, so they opted for an ultrasound instead. I was told they were sure that my “lump” was nothing more than a fibroadenoma (benign tumor). I had these results sent to my ob/gyn who also confirmed there was nothing suspicious.

Fast forward to August 2017… I was at my next routine ob/gyn visit, and my doctor completed his breast exam and said everything looked fine. I questioned the lump again that now seemed like it was the size of a marble and pointed out that it was growing. Since I felt that it had grown he sent me for another ultrasound that confirmed it had doubled in size. The radiologist was still certain that it was just a fibroadenoma, but recommended a biopsy since it had indeed grown.

I was then sent to a surgeon to see about having a biopsy. At this point I was not alarmed at all! The surgeon gave me 3 options; I could do nothing and monitor it every 3 months, a needle biopsy, or remove it. I was at the surgeon’s office alone and of course asked him what the best option was. He told me that if I was his wife and had a painful lump that was “nothing” he would recommend removing it, so I was in agreement. To be honest, I wanted it gone as well. It was on my bra line and hurt so bad some days!

Surgery day came, Daniel, my husband, went with me and I had it removed. Again, I was not nervous. I was not scared. I thought they were going to remove it and all was going to be alright (the C word didn’t cross my mind, so naïve!). After surgery the surgeon told me to call and make a follow-up appointment within 2 weeks, I checked my work schedule and made the appointment closer to the 2 week mark due to convenience. His office called me later and asked if I could come in earlier, I was so annoyed with them, but went. Still I thought nothing about it! In hindsight, I think of how naive I was, but I think for my mental health I am happy that I was not worrying all of those days! I went to the appointment alone, again because I had nothing to worry about, right!?! (WRONG!) When he and his Nurse Practitioner came in and said those words, “I am sorry it came back cancer,” I was shocked. Total disbelief. How in the world at 30 years old did I have cancer!?! I cried. Not ugly cry (yet), but I sat there and just let the tears flow. The NP was AMAZING, she hugged me and I am pretty sure shed a tear for me as my life was instantly changed. She shared her personal phone number with me and said she wanted to be there for me if at all possible. They both told me they wanted to tell me so badly to bring someone with me, but knew I would be alarmed.

When I left the surgeon’s office I immediately called Daniel and told him that I have cancer. He cried with me, but he had the instant mindset of “we’ve got this” and he continued to use that phrase throughout all of my treatment. In that moment normalcy is all I wanted, he suggested we go eat and get ice cream to take my mind off of it. I just wanted to go to the gym and follow though my normal routine! Looking back, I realize how crazy that probably sounds. But I instantly knew I didn’t want cancer to take over my life. My mom goes to the same gym and she knew as soon as she saw me that something was wrong and I told her. From there, I text a few of my close friends, but I didn’t want people to know at first. I am not sure why, but once I had the final diagnosis and treatment plan I knew there would be no hiding it and decided to open up about it.

I got my final pathology back that my cancer was Her2+ ER/PR-. I was told that chemo was a must, due to my positive Her2 status, and that I would be doing 6 rounds of TCHP (Taxotere, Carboplatin, Herceptin, and Perjeta) followed by a total of a year of Herceptin infusions. I would also need a lumpectomy with radiation or a mastectomy (I ultimately went with the double mastectomy). My MO then ordered a breast MRI to confirm the cancer was only in my left breast, the MRI showed a tiny lesion on my sternum and a couple slightly enlarged lymph nodes. I was sent to a breast surgeon who did a biopsy of my lymph nodes which confirmed I had one positive node. Due to the sternal lesion I then had a CT scan and bone scan to see if the sternal lesion was cancerous. The CT scan revealed yet another lesion on my iliac crest (hip), now requiring a PET scan. Praise the Lord, the sternal lesion and hip lesion didn’t light up! I remember when I got the call that those did not light up, I cried! Throughout all of this, in my naïve mind this whole time I was hoping that they removed the tumor and I was done. Again, how was I so stupid!?!

The thought of chemo shook me to the core. I did not want to LOOK sick; I know that sounds vain, but I truly didn’t want pity from others! I did not want the world to know I was sick. What did I do? Google how to save my hair, found out about cold caps and Daniel was on board with helping me do this if I truly wanted to. I talked to my MO about it at my next appointment and was told to “embrace being bald,” he said that cold caps are painful, expensive, and not guaranteed. His office gave me lots of info on wigs, but was not supportive of cold capping! I am stubborn; I talked to many different companies and decided to try it anyways and got my caps through Arctic Cold Caps. At my first treatment everyone laughed when I rolled in my Coleman cooler full of dry ice and caps. Everyone was so interested in the process! Cold capping was hard. My first treatment I had them on 10-11 hours (you start 45 min before, during, and 4 hours after). It was a lot of work for Daniel, he had to change the caps every 20 minutes and make sure the caps were maintaining the correct temperature. He never complained! I am sure I complained more than him about the discomfort! Overall, I would say I lost 25-30% of my hair, it thinned overall, but I didn’t have visible bald spots. Many people say that I never looked sick, but I look back at pictures and they are just being nice! LoL.

Chemo was HARD, but it was doable! I expected to have no life other than cancer while going through chemo, yet I was able to maintain some normalcy most days. I still worked full time, only taking off the day of treatment and was still able to go to the gym and do low impact workouts. I think the biggest surprise was a loss of friendships. One thing many people don’t consider when you’re diagnosed, especially at a young age, you may lose friendships. Your “friends” may not be able to relate to you anymore and become distant. I wholeheartedly don’t think it’s on purpose, but as I’ve talked to other survivors it seems to be a pattern. Although I’ve grown apart from friends, I have gained some friendships that I’m forever grateful for! One of my now closest friends is someone I’ve met in a Facebook group. She messaged me back in December 2017 stating that I looked happy and healthy and that I gave her HOPE. Just knowing I gave one person hope made me happy! She was newly diagnosed and I shared all the information I could about Cold Caps, chemo, etc. We formed the best friendship and last June I was able to travel to Georgia and meet her in real life! It was AMAZING!


If I could give anyone going through this journey tips, it would be to be your own advocate! I cannot express this enough. Nobody cares about your own health as much as you do and nobody knows your body as well as yourself! If I would not have been persistent that my “lump” was growing who knows how much longer it would’ve been before diagnosis! Also, stay away from Google! It is not your friend and will just terrify you even more! Take it day by day and don’t compare your cancer journey to anyone else’s!


I would like to give some advice for those going through chemo. Listen to your body, if you feel like you need to rest, do not over do it! Stay ahead of the nausea meds. Tell your oncologist about any symptoms you are having a difficult time with, they can’t help with relief if they don’t know what you are going through. Lastly, don’t be afraid to ask for help with anything! Whether it be housework, helping with the kids, emotional support, anything!

Don’t be afraid to cry! Don’t hold your emotions in, express yourself. It is ok to have bad days! Find you a “breastie!” Someone going through the same treatment, it is so nice to have someone to relate to. Share stories with. Ask for advice.

Daniel from day one has always told me, “we’ve got this!” I think his positive attitude throughout this tragic time impacted mine and helped me stay strong during chemo, recovery from surgeries, and everything else!

You can follow Toni’s journey on instagram!

@tonir24

Jewel’s Story

So excited this beautiful lady is sharing her story with us. I love her attitude. And can we talk about her infectious smile? So beautiful!
Meet Jewel!
Health has always been my burden. I was born with Sickle Cell Anemia Disease, a genetic blood disorder that has kept me in and out of pain and hospitals my whole life.
In 2017 I was diagnosed with Stage II Triple Negative Breast Cancer at the age of 30. I was completely shocked as I don’t have a history of breast cancer in my family nor did I test positive for the BRCA1 gene.
I endured 8 rounds of chemotherapy, a lumpectomy and lymphadenectomy (removal of lymph nodes) and 6 weeks of radiation. At completion of treatment, in February 2018 I was declared to be in remission.
It wasn’t 7 months later did I spot a white mass growing under my armpit, at the site of my last surgery. I immediately knew that it was back and sure enough a PET scan confirmed that it was. The cancer had come back with a vengeance spreading to the lung, brain, liver and bone- this was Stage IV Cancer. This time it also manifested on the outside of my breast causing a large wound. I currently have no skin on my right breast.
So, I’m back in the fight! I receive chemotherapy 3 times per month and wound care once every 3 weeks. I know the Lord is healing me. 
One thing I have learned in this fight is that my burden makes room for my blessing. I knew that the Lords intent was to be glorified through my illness and that His people be loved, encouraged and blessed. My burdens is what launched Jewel’s Rhema, a nonprofit dedicated to providing resources and encouragement to young breast cancer patients. We provide chemotherapy care packages to clinics for their patients. 
To all my Warriors in the fight: Keep the faith- you CAN beat this. You WILL beat this.”
-Jewel

You can follow Jewel’s story on Instagram.

IG: @jewelsrhema

Amy’s Story

Hello! My name is Amy Cox and I live in sunny California – Orange County to be exact. I am a wife to an amazing husband who was my primary caregiver through cancer and I am a mom to two amazing daughters who are ten and six. When I was 35-years-old, I was diagnosed with Stage 3 invasive ductal carcinoma breast cancer. My cancer was ER+ Pr+ HER2-. Currently I am on Tamoxifen for hormone therapy, and I am waiting on a second opinion for other hormone therapies that may be available.

Today I am 37, thriving after cancer, and living my best life! Here is a snippet of my story:

The possibility of cancer was something I didn’t want to face. Being the granddaughter AND daughter of two very badass cancer survivors and thrivers, I knew it was a possibility. Never would I have guessed it would happen when I was in my 30’s. I had my second baby in 2012 and nursed her for about a year. Six times during that year, I developed mastitis (infection of the milk ducts). It was so painful! It was a little ball on the side of my right breast. I really didn’t put much thought to it then.
Fast forward a few years later. The mass was still there, and it was getting bigger. I was still in denial. Had this cancer been with me all this time? I found out later that there was no direct correlation between the cancer and the mastitis. It was explained to me that the two are not brother and sister, but maybe 2nd cousins. Maybe there will be more research about this subject in the future, but for now, it’s anyone’s guess.
A frightening fact is that four years ago (roughly two years before my diagnosis, and two years after my second baby was born), I posted an image on Instagram telling other women what to look for in their breasts during a self-exam. But I was too scared to even look at mine. What? That is a scary thought!

I finally decided to face my fears, after about four years of ignoring the growth, and go to the doctor. I didn’t tell my husband I was going until the day before my appointment. A mammogram confirmed an abnormal mass. A core biopsy confirmed it was cancer. It was a huge starburst-shaped mass, about five centimeters. I’ll never forget the look on the face of the technician who did the ultrasound before my biopsy. She was about my age, and she could tell that it was cancer. She told me later that during that ultrasound she had wanted to cry with my husband and me. In fact, after we left, she did cry. I was officially diagnosed with Triple Negative breast cancer on October 31, 2017. Happy Halloween!

We decided to tell our girls about the cancer that day, but we were determined to keep up with a normal life for them and took them trick or treating with our friends. Later that night, my husband and I did some (okay, a lot) of self -medicating! We decided not to tell anyone else until we knew exactly what we were dealing with. Our family and friends knew something was happening because we had so many doctor appointments, and they could also sense our overwhelming emotions. The hardest thing was having to tell my sister over FaceTime since she had recently moved to Arizona. She was always my sister/mom, so I really hated that I couldn’t tell her face-to-face.

I was initially told that I had triple negative breast cancer, so I really didn’t have a choice on treatments. Triple negative does not have any targeted treatments, and that’s freaking scary! I was told that I needed the strongest chemotherapy available — I ended up doing the AC-T regimen — and a double mastectomy after chemo. My breast surgeon was wonderful! She walked through all of the details with us and calmed any fears we may have had.

My oncologist was a different story. She never explained much, never gave me options. She just said this is the only way. It wasn’t until I got the final pathology report from my oncologist that we found out I was in fact NOT a triple negative breast cancer fighter, but that my cancer was ER+ PR+ HER2-, a cancer that I knew nothing about. I had been researching Triple Negative cancer the whole time. Knowing what I know now, I would have requested a new oncologist. If I can make one suggestion for cancer fighters it is to find a doctor who gives you his or her cell number and assures you that it’s okay to use that number, and is a doctor who answers questions.

Treatment sucks, no matter what. I honestly can say that nothing surprised me. I knew it was going to rock my world in a way I can’t explain properly. I knew I was going to be sick. I knew I’d just have to put my head down and do work. Okay, maybe one thing surprised me: I didn’t have a complete response from chemo. I was hopeful that I would, but that wasn’t the case. Now I know that some people don’t fully respond to chemotherapy, and that’s okay. For some reason I thought that chemo was going to take it all away magically and I wouldn’t need a double mastectomy. Basic life lesson: No two people are the same. We all know that, but do we always believe it? Hell no! We all desire to have the best outcome, but we need to prepare ourselves for when it’s not.

The outpouring of love and support from friends and family has been endless, and continues even now, almost two years since my diagnosis. My parents, my husband’s parents, my sister and my husband’s sister were all there to offer any help and support we needed. We have the best friends who were always there to help with the kids as well. We have some amazing people in our corner! One awesome event was a huge fundraiser at my old place of work. I was a figure skating instructor for many years, so my amazing rink family came together and planned a skate night in my honor. It was pretty spectacular! If you have cancer, get yourself an amazing village, and don’t be afraid to lean on them.

My advice for new cancer patients

When someone is newly diagnosed, it is my pleasure and desire to help them! I want to be there for anyone and everyone who needs help. which is weird, I’ve always been a people person, but I mostly kept to myself, especially with health and female issues. Now, after cancer, I have this burning desire to put myself out there and just help. So, here are some very practical and honest thoughts about what I went through and some advice for you. I hope it helps.

100% would say to get a second opinion. Don’t go with the doctor you were sent to just because you feel rushed. There is time. My breast surgeon (whom I absolutely adore) told me this. She said we have time. I wish I had taken that advice seriously. I wish I had gotten a second opinion. I wish I had gotten another referral and checked out a few other doctors. Even though the process of getting a referral is a big ole pain in the butt, just do it! And if you are one of the lucky ones who don’t need a referral, go see ALL of the doctors until you find the perfect fit. You will be spending a lot of time at the oncologist’s office. You want to be comfortable with that person. Your oncologist will be your doctor, your therapist, and if you’re lucky, your friend by the end of your journey. You also want to be comfortable with the office staff. I unfortunately had major issues with the staff. Crazy to think that they didn’t have empathy when I was just so scared. Can you imagine getting a bitchy attitude from the staff and having to say to them, “gee, I sure am sorry that YOU’RE the one having a bad day!” That is absolutely unacceptable for an oncology office. If you don’t like the office because it doesn’t seem clean enough, request another doctor. You won’t be judged by that. I thought I would sound like huge a biotch if that was one of my reasons. I wish I had said something. It’s your life, your health, and you have the right to control that! BELIEVE THAT! You do have control. But I would also say, just breathe. The time right after diagnosis is scary. Deal with it how you need to. If you need to self-medicate, do it! If you need to work out your fears and frustration by working out, do it! If you need to sleep all day every day, do it!! But most of all, remember that “this too shall pass”. Just BE BRAVE! And seriously… ask Jesus to “take the wheel”. He really helps.

Chemotherapy

The actual process of chemo is really boring! Make sure you always have a ride to and from. The pre-meds are lit! Haha! A little pre-party before the heavy drugs are given! What is it about Benadryl in an IV? You will walk out feeling great, like a perfect little buzz from a nice night out. But this hangover is way worse than any you’ve had before. So make sure you have all of your anti-nausea meds ready. Keep up on them. Ask for dissolvable Zofran. If you get super sick like I did, you won’t be able to keep a regular pill down. And if the nausea and vomiting get so bad, ask for a suppository. If you need more tips on those bad boys, hit me up. I’m a pro. There weren’t any anti-nausea meds that worked. Trust me, I TRIED THEM ALL! I was so sick. If you are that sick and you throw up a ton, get to the ER as soon as possible for IV fluids. Don’t make the same mistake I did and end up in the ER almost in kidney failure and needing six bags of fluids! It’s rough, and not glamorous at all. During chemo, always have hard candy or cough drops to suck on! I used TheraBreath dry mouth lozenges. I put the link below. And I had Biotène spray on hand daily for the constant dry mouth! Don’t be surprised when it takes FOREVER for the dry mouth to go away! They say to bring a book, or movie or something to occupy your time, I honestly had more fun people watching! There was a guy there each time, and he kept me and my favorite nurse so entertained drinking about five Mountain Dews during his chemo, eating nasty sandwiches that reeked of raw onions, flossing his teeth in front of all of us, yelling at people over the phone, and disappearing for an hour at a time. ALWAYS entertaining! Bring a blanket! It’s freezing in there! But mostly, just try to relax! Key word… TRY!

Fortunately, I was able to forgo radiation. Praise the Lord for that one. I’ve heard that it’s a lot harder on some than chemo. So I really don’t have any tips for that! Except if you really feel like you don’t need it, find a doctor that will look into your scans and give you a straight up answer and one that is not just looking for the $$.

Emotions
The emotional part of this journey is almost harder than the physical part. I journaled and put it all out there. It really helped a ton. But there will be dark days. That’s unavoidable. Let yourself sit in the darkness for as long as you need, but always try to pull yourself out of it. Find a community of women going through the same thing. Better yet, find one person you can text at any hour of the day. Having even one person who knows exactly what you are going through is key. I found my soul sister in the midst of this fight. She was going through leukemia treatments at the same time. Having her to message was what I needed. She got it. Even though she was all the way in Texas, she was and is always with me. We got to meet in the middle of our treatments, and it was amazing. Lots of tears shed with this girl, happy and sad! I get to see her in July, and we cannot wait! Love you so much Kelli!! #soulsisters

Which leads me to this: I wish that I had known from the beginning that I wasn’t alone. I felt incredibly alone. Unfortunately, breast cancer is perceived as an older woman’s disease. All of the informational pamphlets you are given only show women with wrinkles and white hair! That wasn’t me! I was a 35-year-old young and busy mom. I was scared and felt alone. But that’s not the case at all! During my treatment, I had no clue about the wonderful community of young cancer thrivers and survivors. I would look at my healthy friends and family and be incredibly jealous of them. I thought I was the only 30-something out there dealing with cancer. It wasn’t fair! But I was so incredibly wrong. I wish I had reached out sooner! Don’t wait!

Just one more thing: Let’s take a minute to thank Walgreens for their newest ad about breast cancer. It shows women of all ages and backgrounds. Cancer doesn’t discriminate. I linked the commercial on the bottom of the page. Reach out, find your tribe of warriors and hold onto them!

https://news.walgreens.com/video_display.cfm?video_id=15239

Lisa’s Story

Our lovely Woman Candy Wednesday this week is Lisa. Lisa’s attitude and her not wondering, “why me”, really made me smile. You can tell she is one inspiring lady. I’m so glad she shared her story with us.

Here is Lisa!

In early December of 2018, I was watching football with my husband. It was a Sunday and I was planning my week ahead (as most busy moms do). For the past year or so, once a month around my menstrual cycle, I had been experiencing tender breast. So on this day, I was feeling the side of my breasts, kinda under my armpits and on the left side, I felt a small lump. I then went into full self exam mode and felt again, and there was a definite lump. The panic in me happened, and my gut reaction was, well this is it. I have cancer. Then the optimist in me quickly rationalized that this was probably a benign Fibroadenoma. I had already had one of those in my early twenties. I had it removed and tested and I was fine. I thought this would go about the same. So I made a Dr. appointment, he confirmed there was something there but that it was probably just a cyst.

The day after Christmas, I went in for a sonogram, followed by a biopsy the next week and a diagnosis two days later. My ob/gyn came into the room and informed my that I had “just a little cancer”. I thought, what?! Who has “just a little”?! Either I have it or I don’t!

I knew right away that I wanted to be treated at UCSF (University of California San Francisco). They have some of the best doctors in the world and they have a Breast Cancer Treatment Center.

I found out in the weeks to follow that I was Triple Positive. That means that I am Estrogen (ER), Progesteron (PR) and HER2 Positive. I thought of course I tested triple positive, I am such a positive person! This type of cancer tends to be more aggressive so the decision was to have a lumpectomy first, then chemo, then radiation. After my lumpectomy, my cancer was staged as a diagnostic stage II and prognostic 1b. One of my lymph nodes tested positive, so my treatment includes six rounds of Chemo. It’s TCHP (Taxotere, Carboplatin, Herceptin and Perjeta). The first two are chemo drugs and the second two are antibodies. I will have chemo until July of this year, followed by 4 weeks of radiation (20 sessions total) then 8 months more of infusions every three weeks of the antibodies only, followed by a shot once a month for I don’t know how long, followed by 8-10 years of oral medication. All this, for “just a little” cancer.



Port placement day 😊

Through all this, I never thought “why me”. I don’t know why. I guess maybe because I have never known anyone with breast cancer so I have always thought that either I will get it or someone close to me will. Since 1 in 8 women are diagnosed, I knew that chances are this cancer will impact my life at some point. I know that statistically speaking, it shouldn’t be me. I have done almost everything they say to prevent cancer.  I am young (39), I have no family history, I breastfed all three of my children, I am not a drinker, I exercise very regularly and I eat well. I have had one break down. The week before my first chemo infusion. I don’t like not knowing what to expect and with chemo, even though my doctors did an excellent job of preparing me, there is no way to know how your body will react to the side effects.


my hair was coming out in clumps this week so we shaved it!

My best advice to anyone beginning this journey, is to just prepare the best you can, get a team of doctors that you trust your life with and ask questions. For me, I have had to travel to each appointment to a bigger city (San Francisco). It’s about 1 hour 45 min. away, but my life is worth it. Also, get your support system in place. You will find out quickly who is there for you and who isn’t. I have the BEST husband. We were high school sweethearts, married young and going on 20 years of marriage. I want for nothing. He waits on me hand and foot, tracks my meds, gets me anything I want and knows what I need before I do. He’s made this whole thing so much easier. Also remember at your lowest points, the reason you are doing this. To live. The treatment is torture on your body physically, but remember what it’s doing. It’s killing cancer too! You will get through this, we will get through this.

Lisa

Candy’s Story

Today’s WCW is Candy. Candy reached out to me on Instagram wanting to share her story with us! Thank you so much for sharing your journey!

Me in my favorite shirt!

Hi, my name is Candy and my journey started in August 2017. Years ago I attended a health fair and I was told that since I had large breasts, I would need to be creative in my self checks. They suggested things like bending over or laying on my side when performing the checks. I hadn’t been as diligent as I should have been and one evening, I was in bed and was like, Oh My!!!! I haven’t done a check in a few months. So, I was doing my self check and was reaching under my left breast and I felt something. No Way!!! This can’t be!!!! I kept feeling the lump and checking on the right side.

The next morning, I call the doctor’s office to get a diagnostic mammogram set up. By the time I went in for my check up and mammogram, I had found a second mass. I pointed it out to the technician performing my scans. They suggested I have an ultrasound. When I went for the ultrasound, the doctor showed me how the first mass looked suspicious and the second one looked like it was a cyst. The biopsy appointment was set up within the next few days, and 3 days later I hear, “It’s Cancer”. I was at work when I got the call and decided to take it because it was at the end of the day and the weekend and I was not going to wait till Monday for the results. I broke down when I heard the news. My husband came to pick me up from work. I went home and immediately got call from one of my closest childhood friends. One of the doctors that I work with has known her forever and called to tell her the news. I was extremely touched that he took the time to contact her knowing that I needed her.

My work family. The best ever.

They had an appointment set up with the surgeon consult 3 days later. I met my surgeon and we talked about my options. They suggested a lumpectomy with reconstruction. I made the joke, I didn’t want her to rebuild to match my other breast, I wanted a reduction. She said that is something I could do, and yes I wanted to do this. I remember after my consultation, she had the technicians ultrasound the area under my arm to see if it looked like it had spread to my lymph nodes. I remember the tech saying that the mass looked so much smaller than it felt. The surgery was set for 3 weeks later. They wanted to perform a MRI as well because I had so many cysts in my breast.

The MRI for me was horrible. I almost hit the panic button. The results came back that the original mass was triple in size, and the second one I had felt was showing it could be cancer. Both of my breast were lighting up on the scan. We had to do a biopsy on the second mass. It came back showing it was in fact cancer. I had to have a biopsy via MRI on my right breast which came back negative. So next was surgery.

Wow, was this an experience. They marked where they were removing the masses and the reconstruction on both breast. During the surgery, my doctor said that she could tell that 4 of the lymph nodes had cancer. She biopsied 4 more and they came back positive. She removed all of the nodes and all but one had cancer. At my doctors visit, my initial Staging was Stage 2A. After my surgery I was Stage 3. After recovering from my surgeries ( I had to go back 4 days later for emergency surgery. My left breast got a hematoma and was bleeding and swelling), I met with my Oncologist. We went over my treatments. I would be getting 8 rounds of chemo total. I would be getting them every 2 weeks, then I would meet with the Radiologist and discuss the next treatment. My Oncologist wanted to do a Pet Scan first to make sure that the cancer hadn’t spread further. The scan showed that the lymph nodes by my lung and trachea was possibly cancer. Immediately, the next day, I was having them biopsied. When I woke up from the procedure, the doctor immediately told me that it was cancer, but it will be sent to the pathologist to confirm. At this point, I think hearing that news was the hardest for me. I felt like every time I turned around, bang more cancer. This was my breaking point. I was not going to survive this. I went from starting with Stage 2 to Stage 4.

I feel very lucky for the doctors that were part of my treatment.  My oncologist treated my aggressive cancer with aggressive treatments.  The chemo was tough on me.  The first 4 that caused nausea and hair loss, I slept through.  I was off 10 days after chemo, then worked 3 days.  The second 4 of the chemo treatments, I felt like my bones and muscles were being attacked. I was off a week and worked a week.  I’m very grateful to my co workers who helped with my schedules, and my family and friends who went to every treatment and kept my spirits up. My chemo sessions were sometimes called the party area.  We livened the place up! 

I had 39 radiation treatments total.  I am very fair and surprisingly I didn’t burn as bad as I thought I would had. I had my second pet scan before radiation and it showed that the two lymph nodes by my trachea were showing no activity, and the one by my lung had shrunk from 7.3 cm to 1.7.  My symbolism is the Sun.  When I found out I had cancer, I lost all my rays.  At this point and the news of the pet scan, the rays were coming back to my sun.  I was literally walking on sunshine and I think it became my theme song.  

Ringing that bell!

I finished radiation, and I started on Letrozole instead of Tamoxifen because Chemo kicked me into menopause. I also started on Ibrance.  The combination was to suppress my hormones and shrink my tumors and prevent any other tumors from growing.  Two PET scans later and I am NEAD, No Evidence of Active Disease.  Words I never thought I would hear.  

More rays for my sunshine.

My Grandchildren. I rocked the baldness!

  I started following Laura because Amy from the Bobby Bones Show had shared her picture after her surgery and I was like, Hey I took a picture too in the surgery bra.  She has been an inspiration.  I started my journey before her but Laura and others are keeping  my spirits up.

  I didn’t really do a hashtag but I love hers.  Ta Ta to Cancer.  I have loved saying Ta Ta and want to keep saying Ta Ta.   I am enjoying reading everyone’s journey and hope you enjoy mine.   

You can find Candy on instagram @candycsj

Lesly’s Breast Cancer Journey

I am totally humbled that Lesly has chosen to share her story with us today. Lesly was the first one I reached out to when I knew I was going to be needing chemo. I remember her and a friend of ours going to my first wig appointment at HPI. I said to Kimberly, the owner of HPI, that I was more traumatized by the thought of losing my hair than I was losing my breasts”. Lesly looked at me and laughed and said she legit said the same thing!

Lesly is one of my heros. I’m so lucky to have had her in my life during that unknown journey, and I’m so glad she is in my life now to help each other learn how to navigate this new life of ours.

Enough of my babbling! Here is Lesly!

Laura is one amazing lady!  We met through mutual friends just after her diagnosis.  I was about 6 months ahead of her in my BC journey, and I met her at her first wig appointment.  Her spirit and joy were infectious.  Like many women I have met in “the club you never want to join,” she was strong and full of positivity.  I continue to be inspired by her courage in sharing her story.  
Early on, I was told by another friend in the club, “you can’t feel angry that your diagnosis is worse than some nor can you feel guilty that yours is better than others.”  She was spot on.  At the time I was already feeling both of those things.  As I look back over the last 2 years, I realize that for whatever reason, this is part of my path.  I choose to be better because of it and I am so grateful for the lightness I feel on the other side.


I am 46 years old, live in Birmingham, AL with my family – my husband, Robert, and his 2 great kids Max (17) and Miller (14).  I am also career woman, traveling to Nashville (and all over the country) with my work.  On June 26, 2017, I was diagnosed with breast cancer.  I had always been a big planner, super organized and highly focused.  Needless to say, this diagnosis was not something I was expecting and it hit me like a ton of bricks. 


A little backstory first.  I had been married previously in my late 30s and spent 5 years desperately trying to have children with my first husband.  Seven miscarriages, multiple drugs, shots, surgery, IVF, etc consumed me in that period of time.  I read as much as I could about infertility and everything surrounding it.  Somewhere along the way, I read about increased cases of breast cancer in women on a similar infertility path, and it stuck with me.  I don’t remember exactly what it was or what drug it was linked to, and truthfully, that part doesn’t matter.  What is significant, is at that point, I started doing self breast exams every month.  In the Spring of 2016, I found 2 lumps in my left breast.  My breast tissue was too dense to show anything on a mammogram, so an ultrasound was ordered….it revealed 2 cysts.  I had them aspirated and tested, and all came back fine.  No big deal!  In April of 2017, I found another lump in same breast.  I was not overly concerned…it seemed just like the first cysts to me, and it was on the same side.  I already had a mammogram scheduled for June 19th, and Robert, and I were getting ready for a 2 week trip to Israel, so I decided to wait and have it checked when I was scheduled in June.  The NP doing my exam that day, had a difficult time finding it, at first.  When she did, she explained that it didn’t feel like a cyst, and because of my dense breast tissue, she wanted me to have an ultrasound, as well.  After my infertility struggles and miscarriages, I had come to recognize when an ultrasound wasn’t looking good.  And THIS was one of THOSE ultrasounds.  They could not give me a definitive answer that day, but I saw the concern and asked the radiologist to send my results to my friend who was a surgeon.  I was traveling for work that week and just pulling into Nashville when his office called to schedule a biopsy…immediately.  Friday morning, we had it done and Monday, Robert and I went together to hear the results from Dr. Fischer.  I had known Philip since High School and he is married to one of my best friends.  I can’t imagine what it was like for him to give Robert and me the news, but he did with the utmost compassion and care.  Hearing those words, “it’s cancer,” is not anything I can describe.  It was terrifying and numbing  (and a whole lot of other emotions) all at once.  But the shock could only last a minute, because reality was about to set in.  I had to figure out exactly what I was dealing with and how to get rid of it. My cancer was diagnosed as Stage II, grade 2 invasive ductal carcinoma, hormone positive and HER2 negative.


Robert was my rock.  I am a pretty private person.  I only wanted to talk to the few people who could really help me determine the best course of action, and get me moving.  I called and told my parents, asking them to share the news with my siblings and my huge extended family.  Robert told the kids, his mom (Marcia), his sister (Carrie), the rest of our extended family and closest friends.  My friend and co-worker (also a cancer survivor), Mandy, shared the news for me with my work family and business associates.  I was so overwhelmed by the diagnosis, and I needed to process it.  Because of that, I was not comfortable talking about it or sharing it on social media.  My key people…Robert, Carrie, my Mom and Mandy, helped manage those early conversations for me.  Once I understood what I was dealing with and had my surgery scheduled, I sent an email to my friends and family sharing the plan.  I will forever be impacted by the strength my friends and family gave me at that time. It humbles me still today.


In gathering information, I knew I wanted more than one opinion.  I quickly realized there was no ONE WAY to treat this disease, but there were options based on my specific cancer, my age, my health, my oncotype score, etc.  I went to a second hospital for another opinion.  It was drastically different than the first and I left in tears – full blown ugly-crying breakdown.  I was lucky enough to have connections to 2 additional oncologists in other cities – one being one of the leading breast cancer oncologists in the country.  My discussions with them confirmed my gut instinct and I chose my treatment plan.  I opted for a radical mastectomy and reconstruction first.  Dr Fischer did the mastectomy, followed by Dr. Steinmetz doing the reconstruction the same day, then Dr. Piede at the Bruno Cancer Center took over after surgery as my oncologist.  The surgery was a success.  The path and test results concluded clear margins, no cancer in the lymph nodes, but a high enough oncotype score that I would need chemo.  The good news –  only 4 rounds of Taxotere and Cytoxan…no RED DEVIL and no radiation!  Small but monumental victories to me!


IMPORTANT NOTE – there truly is no ONE RIGHT treatment plan.  Every person and their exact plan is as unique as their specific cancer and their DNA.  Right after my diagnosis, I found a lot of well-meaning friends wanted to share with me what they thought I should do.  Those opinions came from a place of love and support, but they were not what I needed.  I had already connected to a few women who were members of the club.  Those women helped me understand that the only people that could determine my route were my doctors, Robert and me.  


There were so many unknowns going into the surgery and treatment.  I had never been under anesthesia for more than a couple of hours, and I was under for 9 hours for the mastectomy/ beginning reconstruction/ expanders.  I was not prepared for how difficult the “hangover” from that amount of anesthesia would be…nor for the discomfort, the inability to do almost anything that required my arms, the pure ick of drains, etc.  I was exhausted and struggled to remember things…everything it seemed.  I had a note pad with me all of the time.  Once treatment started, I was determined to NOT have a port.  I didn’t want the reminder in between treatments (mine were 21 days apart) that I was “in treatment.” I obviously didn’t realize that looking in the mirror would be a constant reminder (being bald will do that to you).  Truthfully, being in treatment was the 1 thing I DID remember…everything else was a struggle (YES – chemo brain is a real thing)!  On top of that, I did not realize how hard the chemos would be on my veins.  By my last treatment it took my nurses close to 2 hours to get a vein to hold up for me.  If I had to do it over again, or if I was asked for advice from someone new to the club, I would say – GET THE PORT!  There is a reason for it!  


Losing your hair sucks! It’s that simple. I didn’t realize it until the day we shaved off my few remaining straggles, but emotionally, it feels like losing an appendage. I had a much harder time losing my hair than I did losing my breasts. Think about it – most women have never seen themselves without hair. I certainly had not. I had 2 girlfriends with me when that last little bit came off. They brought wine and wigs and made sure to keep my spirits high. We went to HPI (the amazing women in Nashville who custom made my wig), let them shave what was left and do my final wig fitting. I was looking at my friends as the clippers cleaned up my bare scalp, then I turned to face the mirror. All I could do was cry. When I saw myself bald for the first time, it was like I lost part of my identity in that moment. Add to that, the reality check that most acquaintances and strangers had no clue about my diagnosis at that point. The new bald head would change that – now everyone would know I had the “C.” Those first 2 days were tough. But then, I started to get comfortable with it. I guess I really started to get comfortable with myself. I was managing major changes to my body, while managing nausea, exhaustion, mouth soars, hot flashes, headaches, body aches, the list goes on, and also trying to keep up with every other aspect of my life. It was a lot! But then, I eventually started to appreciate how easy it was to NOT have hair. I wore my wig when I went out or to meetings and events, but when I was home, working out, going to the grocery, living everyday life, I wore a hat or a scarf. Eventually the freedom of being bald helped me learn how to not to sweat the small stuff.


I did get some great advice from my fellow club members and from my primary physician’s nurse (Pam was a former oncology nurse).  Hydrate, Hydrate Hydrate!  Pam told me specifically 40 oz of Gatorade or G2 starting the Sunday before my Wednesday treatments, plus 60 oz of water each day.  I was religious about getting my fluids and it paid off.  I also exercised everyday.  I have always worked out – I am a runner and have a trainer 2 days a week.  After surgery, as soon as I got the green light to walk, I started walking outside.  I continued that during chemo.  Dr. Piede, said it made a huge difference in my overall health and how I handled treatment.  There were some days I was shuffling more than walking, others I could barely make it to the end of the driveway, but I tried to do something, even if just for fresh air.  I always had a friend or my mom with me to make sure I made it back ok (some days were questionable). Those walks and visits with friends were as important to my mental and emotional health as they were to regaining my physical strength.  I also set a goal during treatment to do a 10k Thanksgiving week.  I realize this is a bit crazy and not the right goal for everyone, but for me, it was pure motivation.  We were going to Rosemary Beach for Thanksgiving and it was supposed to be the week of my last round of treatment.  Because of the holiday, Dr Piede let me push treatment to the following week, giving me an extra week of recovery between my 3rd and 4th rounds of chemo.  With his blessing, I signed up for the race.  On my good days between treatment (I was typically down for 5-7 days, then gradually improved over the next 14 days) I would walk/ jog 2-4 miles each day.  When race day came, I had no clue if I would make it.  Two friends joined me for the race, talking and running with me all 6 miles.  I cannot remember how we did, but it did not matter – we finished!  Robert and our family were cheering us on at the finish line.  It was the best Thanksgiving I have ever had. 
A couple other little tidbits:

  • Chemo nurses are amazing.  My friend, Laine, who was about 6 months ahead of me in treatment, told me early on to meet and get to know my chemo nurses.  I did and Kim and Lorie became my angels.
  • Rest is one of the most important things you can do.  You really cannot get too much of it.  Rest your mind, your body and your soul.  They all need it.
  • Anything that comes up in your body that feels off or weird or abnormal – tell your doctor.  Even if it feels insignificant, tell them.  You are the only person who can communicate what is happening in your body to your doctor – don’t shy away from sharing that information.
  • Chemo brain is real.  The change in my brain, my memory, my ability to find vocabulary…it was all so frustrating.  I still take notes in every phone call, every meeting, all day long.  Find what works for you to give you confidence to make your way through that obstacle.  It does improve and I still have hope it will be back 100%.  Acknowledging that it exists and being honest about it, rather than trying to hide it from everyone (including yourself), makes it easier to manage.  It is OK!  And on the bright side, I really don’t remember my worst days after chemo!
  • Being the sounding board for “new members” the way so many women were for me is an amazing way to perpetuate kindness, hope and love.  We need more of those qualities in this world and I have yet to meet a woman on this path who is not a shining beacon for all of it!

I am on Arimidex now and for the next 10 years.  I went through 4 AI’s to find this one.  The menopause symptoms are REAL, but they eventually settle.  The bone pain is no joke, but it calms down too. I met the most amazing woman in my travels last month.  Her name is Amy and she is Stage IV Metastatic BC.  After 7 years post her first diagnosis (hormone +, HER2 -), treatment and an AI, she is in the battle again.  But she is gorgeous and strong and HAPPY!  She is living life FULLY!  Another member of the club whose presence inspires me.  
In this whole experience, I had to learn to let things go.  Historically, I had been a bit of a worrier.  My family and I were not expecting to get this diagnosis when we did, but then no one is.  If you are reading this, you know first hand that cancer does not discriminate.  It is painfully cruel and systemically hard for everyone affected by it. You have to educate yourself on YOUR version of the disease as quickly and thoroughly as possible, and preferably, without getting on the internet.  Both hospitals gave me information from the American Cancer Society on MY specific cancer and on breast cancer in general.  I read all of it.  I compiled questions from that research for my oncologist and my oncology contacts.  I insisted on being informed so I could clearly weigh my options.  I also respectfully thanked advice-giving friends who had not personally experienced a similar cancer and stayed away from engaging in their opinions.  I read books, I listened to podcasts.  Not just about the disease, but about life and living… fully, joyfully and with purpose.  I continued to work, setting short term and long term goals that gave me something to look forward to on the days when I felt terrible.  Accomplishing those goals when I felt good gave me hope and strength.  I kept a spreadsheet of every person that reached out to me, and I thanked them personally with a written note or email or text.  The pure love from my people was amazing.  Telling them how important they were to my recovery, energized me and gave me the opportunity to share and spread the gratitude  that enveloped me. 


I am just over a year post final reconstruction and 16 months post final chemo.  The experience of my cancer- the entire experience –  is one of the most transformative in my life.  I found grace in tragedy.  I believe that cancer (or any life set back) can make you better, kinder, wiser, happier, stronger, more humble, more loving if you choose to open your heart and soul to that transformation. And I now know that when I lost my hair I didn’t lose my identity, it was really just the beginning of discovering who I really am.


Thanksgiving Day race with my brother and sister after round 3 of chemo.
My first night out with Robert in my wig – it looked so much like my pre C hair!

In my wig with Laine, one of my BC girls who guided me along the way, and Tyler, one of my best friends. This was one of my goal nights after my 2nd round of chemo. 
With Robert one year post surgery – new hair growing back!


DA and Val were the first 2 women “in the club” that took me under their wing.  They gave me such strength. We ran into each other at A restaurant about 9 months post treatment.  It’s always a celebration when I see them. They are such beauties inside and out.

Lesly Simon

You can follow Lesly on instagram at @leslysimon72

Blair’s Journey

blairs journey

I’m Blair! I am a mom, wife, hairstylist and SURVIVOR.  I am a Tennessee native, born and raised in a small town north of Nashville called White House before moving to my current home of Gallatin.  My journey with breast cancer started when I was just 25 years old. I am now 26 years old and have 3 babies under the age of 5 with my husband of 5 years, Spencer.

 

My life changed last year when I felt a lump while showering, when I was 34 weeks pregnant with my 3rd baby.  I went to the doctor and had the lump checked. After they performed an ultrasound, I was told I would need a biopsy.  When my results came back I was home alone with my oldest and my middle child. I will never forget that day because it was February 2nd, my husband’s birthday.  I received the news I’d hoped I wouldn’t be hearing.  It was cancer.  As soon as I hung up the phone with my OB I called my husband, then my parents and my sister right away to deliver the not so great news.  While they already knew cancer was suspected we didn’t believe this would be happening. 

 

I was diagnosed with a hormone positive (Estrogen and Progesterone positive), HER2 negative, stage 2 breast cancer.  By definition ER/PR positive breast cancer is fueled by hormones, therefore my cancer was feeding off of my pregnancy as my body was naturally producing more of the hormones the tumor responded to. My doctors told me once my daughter was born there was a small chance my cancer staging could reduce due to my main supply of hormones being cut back. Thankfully this rang true and after my double mastectomy in March 2018, my final pathology came back to be stage 1.

 

Prior to my double mastectomy I delivered my daughter at 35 weeks and 6 days, just 2 weeks after finding my lump!  In order to determine the next steps for my treatment I had to wait for all my milk to dry up and have an MRI of my breast. When I went in for the test I had a panic attack and wasn’t able to complete the MRI. I then saw the general surgeon on my case and had genetic testing, all of which was negative for any cancer linking genetic deformities such as BRCA 1 and 2.  At this time the biopsy tissue was also tested to determine which hormones my cancer was fed by.  Once we had these results I met with my oncologist who determined I would be having a double mastectomy without any upfront treatment. 

 

For those of you who have had a mastectomy, you may be able to relate to my surprise when I found how limited my strength was afterwards. You just don’t realize how many muscles and how much strength you pull from that area in everyday life. Just sitting up for the first month or so I had to have help from someone.  This procedure is not for the faint of heart.  If there is one thing I wish I would’ve known, it would be to have research more options on reconstruction and advocate for myself more on exactly what I wanted! I’m learning to love myself, but to only be 26 it’s very hard to accept my body for what it is now. I feel if I would have been more informed and were able to make choices for myself prior to the surgeries, I would’ve been happier about my new body.

 

If you are just diagnosed I would recommend you DO YOUR RESEARCH. It’s kind of a double edged sword, because in doing so you can totally scare yourself by things you can read and not fully understand. On the other hand, by doing so you can fully present yourself with every option and ask every question/concern you have, to put your mind and heart at ease.

 

The other side to the process is the mental/emotional side.  I am not an emotional person. I do not like for anyone to view me as weak or emotional, but through all of this it was very hard not to be. If I could give one piece of advice to help someone mentally and emotionally go through their journey, it would be to keep yourself busy and surrounded by people who love you, support you, and will always keep you laughing. My family, friends, and babies kept me going strong and moving forward through this entire journey. Every day is new and while it may not be what you wanted you take the cards you are dealt, you lean on the ones you love and love you, and you trust in the Lord to get you through!

 

My journey was definitely the furthest thing from easy, but it could’ve been a lot worse. I am so blessed and thankful to say, that as of March 12th, 2019, I am 1 year cancer free, and hoping and praying for many more years. I am thankful for all the support and love I received throughout my journey and would love nothing more than to be a rock for someone else experiencing breast cancer. If you need me I’m here.

Blair’s Instagram name: blairelise