My Fight

This page is dedicated to my aunt who lost her fight with breast cancer at 43 and all those fighting the battle.

At the young age of 24 I was diagnosed with a malignant phyllode tumor and it completely changed my world. 

This page is my journey, my fight from beginning to end, how I felt at every moment of it. I hope that my story gives you the inspiration you need to conquer this. May God give you strength and encouragement.

~

Chapter One: The Discovery

Near the end of September 2011 when I was stressed and busy with a pageant, a moment occurred that I had dreaded all my life. A unplanned discovery and a moment when my heart sank to the floor.

What is that I feel in my breast? a lump…

Breast cancer runs pretty strong in my family, my grandmother has had problems with tumors, my aunt died of breast cancer at the early age of 43, and the list goes on into our ancestry and family tree. It has always been one of those things I expected…eventually. I am constantly checking for lumps, I knew one day it would be something I would encounter…but not at only 24 years old.

I did my best not to think about this foreign thing in my breast that night, I think I spent about 5+ hours on WebMD reading all about the possibilities of my mass. I ran into my office the next day, closed all the doors and made my mother feel it just so I knew my imagination wasn’t playing tricks on me. No tricks, it was there, she felt it too. My mother began to tell me how it was probably a cyst, a liquid sack or a calcium deposit, something that was no big deal and would probably go away. But I had a feeling, a horrible achy feeling in the pit of my stomach that it wasn’t any of those.

The next moments calling the doctors office to schedule my appointment were very fuzzy. All I could make out was “I have a lump” I remember the nurse saying something along the lines of “you’re too young for that” I know am I , I thought to myself. They couldn’t get me in for another week…after Miss Michigan. Looking back I don’t really remember how I got through the week of pageant prep and afterwards leading up to the doctors appointment. I guess it probably was a good thing I was busy with the pageant.

I got the same reaction from my doctor that I received from the nurse and my mother. “Your too young for breast tumors, it’s probably just a cyst or liquid sack.” As twisted as it sounds I almost wanted to laugh in the doctors face when she felt it, “oh no that’s a hard lump, you need an ultrasound.” My feelings are usually right but people doubt me because I am young. So they scheduled my appointment for an ultrasound in the cancer center in the hospital. Not a place I pictured myself going to at 24. Everyone at the cancer center was almost in shock that I was there. Trust me, I didn’t want to be there.

Everything about hospitals and cancer centers is a process. I didn't really know much of what happened over the following few months, a lot of appointments and sitting in a gown in a room, waiting for someone to come in just so they can start with “oh you’re young.” yeah thanks I know. 

It wasn't easy. Go in for an ultrasound. They would tell me it’s a mass and I needed to see the breast center. Wait for new patient appointment with breast center. Wait for appointment with oncologist. And then the appointment with oncologist was finally there.

It’s was one big waiting game but the moments waiting for the oncologist to walk in my room seemed to take about 50,000 years. I was seriously hoping for a woman but in walked a man. But he had kind eyes, seemed to be very genuine and then I learned he came highly recommended. 

A tumor. A word I had been scared of since I felt the lump the first time. It needed to be biopsied to determine if it was pre-cancerous or cancerous. My mind swirled with a million emotions but there was only one thing I could think of...

My aunt was 40 years old when she discovered the lump in her breast…she was breast feeding her newly born son. She went through the same process I did. Appointment. Wait. Appointment. Wait. Appointment. They told her it was a tumor and needed to be biopsied. She had it biopsied, they determined it was benign but that she needed to still have regular mammograms to watch it. Three years later it was full stage cancer and there was no amount of chemo or radiation to help. I wasn't taking my chances with anything.

“I want it out!” the only words I was able to make out to the oncologist as he waited for my decision and concerns.

And so my surgery was scheduled to remove the mass. 

I think from the moment I told my family I needed to go in for an ultrasound they were in denial. “It’s not a big deal, you will be fine.” Or maybe they just acted like it wasn't a big deal to calm my nerves about it. Well let me tell you, it didn't work. The truth is I felt more lost and alone than ever before… and I was scared…to death.

The truth is I couldn't begin to explain my thoughts. But they sounded something like this:
{I’m going to have a scar on my breast for the rest of my life, what if they take a lot of the surrounding tissue with the lump…will I be lopsided…will my breast look disfigured, what if it turns out to be cancer, how much radiation will I need, what if I die, I don’t understand how this is happening to me, the sympathetic looks are the worst, I don’t want to lose my hair…or my breasts, I don’t know how long I can fight for, selfish as it may be if I die first I won’t have to endure losing those close to me, there are so many things I would miss, I am never going to feel the same way again…}

Chapter Two: The First Surgery

I will never forget that morning preparing to go into the hospital. I think I barely slept the night before…maybe a few hours. My throat was dry and my stomach ached from not being able to have food or water after midnight. I had never had surgery before so I had no clue what to expect. They hooked me up to a lot of tubes, my mother kissed my forehead and they wheeled me away. They last thing I remember is seeing my doctors face and bright lights in the operating room. I awoke to a kind nurse offering me water and asking what I would like to eat. About an hour later I was sent home to recover. As soon as the mass was out it was sent to be biopsied and I began the waiting game for the phone call. A phone call that changed my life forever.

Chapter Three: The Phone Call

My first surgery was on Dec. 14th and the phone call came over a week later on Dec.23rd…right before the holidays. Two days prior I had a conversation with my esthetician whom I told “I really don’t want the call to come before the holidays…because if it’s bad news then my holidays are ruined.” When the phone rang as I was driving that day, I think my world stopped. I answered hesitantly recognizing my doctors phone number. Although it wasn't my doctors voice but the voice of his nurse assistant. “Rachel…I have your pathology results back…”

The rest of the conversation I don’t quite remember all that well, I couldn't tell you where I was driving to or much of anything. What I can remember is her telling me “I am sorry Rachel but your tumor is a very rare phyllode tumor which occurs in the tissue…it grows very quickly…we need to remove the rest of your breast tissue…” I know there was more to the conversation but my world went blank in those moments, she transferred me to the surgery scheduling department and I was scheduled for another surgery. The next thing I knew I was curled in a ball on my bed crying. All of my fears and gut feelings had came true…

I have breast cancer…

The first step in dealing with anything wrong is accepting it…it took me some time but I could finally say it aloud.

I came to learn that a phyllode tumor is a very rare type of tumor that only occurs in about 1% of breast cancer patients and usually occurs in women over 40…it grows in the breast tissue and grows rapidly. It doesn't come in stages it is either pre-cancerous or cancerous and the lines between the two are blurred. Regardless of which it is, it is still classified as breast cancer. It does not respond well to radiation or chemotherapy so your best chances are catching it early and removing the breast tissue. Once removed, things are very optimistic and chances of it returning are rare. The chances of someone my age developing this are near impossible.

Chapter Four: Making Decisions

My holidays were…well…not the same. Cancer weakens your immune system (I was sick for almost a month) so I was exhausted and drained. I understand why they call it a fight…you feel so tired that it becomes a fight to get out of bed and exist in the world. Nothing seemed as important that holiday season as it had before…I just wanted time to spend with my family. However all my friends and families questions just exhausted me even more, and I felt like a broken record having to explain it over and over again.

When I finally stopped crying that day of the phone call…I called my doctors office and told them I wanted to come in to talk to my doctor about my options. Back to the dreaded cancer center I went. Back to the sympathetic looks and back to the “wow your young” comments. But I powered through it because I had too many questions that needed answered: how long will I be lopsided for, will they use the same incision, will it come back, will I be able to breast feed one day, will I be able to get an implant, should I have both removed to be safe…all questions circulating in my head.

My doctor assured me that he could use the same incision however do a simple mastectomy while saving the nipple and ducts. I would be lopsided for some time however if it didn't come back within two years I should be safe for life. An implant could come eventually and I will be able to breast feed since my ducts have not been jeopardized. However I was told I would still need mammograms for the rest of my life and I couldn't even begin to think of how living with only one breast will make me feel. 

Chapter Five: The Second Surgery

The month between my surgeries was rough. I was constantly sick and I got such a bad flu the week before my surgery they almost rescheduled it, but it was imperative to get the remaining tissue out. My nerves kicked in about a week before as well and in a combination with the flu and being restless I stopped sleeping. Finally my mother gave me melatonin to try and get me to rest. Didn't do any good…the melatonin didn't put me to sleep it only made me hallucinate. Hallucinating at 4am the nights before you are about to have a breast removed = not an enjoyable experience. But somehow I survived and the morning of finally came around.

I was surprisingly calm, as it was the same outpatient procedure and facility that I had experienced before so I expected it to go the same. The wait was even shorter this time, hooked up to tubes, signed a few documents and away I went. The second time I didn't remember being in the surgery room at all, they had me knocked out. The first surgery I remembered waking up with little pain, feeling alright so that’s what I expected again. However I was wrong.

I awoke to the most intense burning sensation you can ever imagine. My breast, or where my breast had once been felt as though someone burned it off with a cigarette. I was so out of it that I couldn't speak, so I cried. And cried until finally the nurse came and asked me what was wrong. I managed to tell her I was in pain and it burned and I wanted my mom. The first surgery I woke up with a gauze over my incision and then a tight band wrapping my chest. This second time there was nothing. Just the incision rubbing against my gown. And it was horrible and the nurse wasn't helping. So I turned over and cried.

Finally after what seemed like forever my mother came in the room and I managed to tell her what was wrong. After that I don’t remember much besides waking up in my bed later that day. I came to learn that they woke me up from the anesthesia too early and for some reason the nurses were too busy to bandage me up correctly. My mother took care of that and got me out of there.

It took almost a month for me to heal completely and for my immune system to get working properly again and four months later I could say that I feel good. I remember my first run four months out, I cried afterwards. My incision heeled and the swelling gradually went down. But I knew I would never be the same. 

Chapter Six: Living Without

I didn't really think twice about removing a breast when I learned about the cancer. My decision was instant...hell I almost had my oncologist remove both as a precautionary. But four months down the road I struggled. I have always had very small breasts, not enough to fill a cup, finding a bra was always like searching for a penguin in the dessert. My whole life they made me insecure. High school was misery. Thank God for the invention of ‘chicken cutlets’ they have helped me in more ways than anyone could ever imagine. I always planned to get implants one day, not large, just enough to feel secure. So at the time I didn't think losing one would make that much a difference when it came to my insecurity. And was I wrong.

The truth is it made it worse. I didn't even look at my tight shirts or anything revealing. The looser and the more layers the better. But when it started to get warmer and summer approached... it made me even more insecure. My summers revolve around vacations, beach weekend getaways, lake parties & LOTS of boat days. Sounds amazing right? However all those things involve one thing: a swimsuit. A piece of clothing that isn't baggy, I can’t layer it and I can’t hide what I am left with. I had a trip to Cancun planned and normally months out I probably would have ordered new swimsuits for the trip. Not the case…I didn't even want to bring one on the trip. All I could think was 'am I going to be that girl that wears a t-shirt?'

I know that in the grand scheme of things I shouldn't be complaining. I am alive. I am lucky to have everything I do. The trade of my breast for my life was a no brainer. But I am human and I am a woman and I have insecurities. And even though I am grateful to God to be alive and healthy, my insecurities are got the best of me. 

Dealing With My Emotions & Thoughts

I am extremely hopeful that the hardest part of all this is behind me and I won’t have to deal with it again. But  it took me almost a year to get over it emotionally. For a long time I was alright talking about it, but still was scared. I noticed that everyone said “well at least you didn't die” “well at least you didn't lose both” “well at least you didn't need chemo” At least I didn't this, that or the other thing.  It’s as almost they are telling me I should have been over it before I actually was.  And I am not over it. I am not in the clear. It could come back.

To this day I have so many fears still. I am scared that it might come back. I am scared to lose both breast eventually. What if I need radiation, what if I need a full mastectomy eventually. So many what ifs but I am going to fight through them the best I know how. 

Part of me can’t believe this is happened to me and I actually can’t believe I shared it for the world to see. I am usually a guarded person and I do not like people to know my personal battles. It’s quite funny how much I actually share on this blog compared to what I actually tell my friends. But sharing my story surprisingly has made me stronger. At the time I didn't want anyone to treat me differently and I didn't know if I could handle the looks people would give me. The last thing I wanted was sympathy. But sharing never made people sympathetic it just made them see me as a stronger person. 

Dealing With Others Emotions & Thoughts

This wasn't an easy fight for me but I came to learn that a lot of people didn't handle the situation as well as I did. Here was a little something I posted for everyone in my life.

My parents feel heartbroken and helpless…a parent seeing their child sick and not being able to help them must be excruciating.

So to my parents I want to give you strength: I pray you have the strength to get through this along with me, the strength to realize there is nothing you can do to change anything and the strength to know I will get through this.

My friends feel strange and lost…they don’t exactly understand how someone they know could be going through this. I am sure they don’t know what to say or how to act.

So to my friends I want to give you comedic relief: I pray that you know I need your smiles and laughter to get me through this, I do not need you to say or do anything other than just keep being my friend that knows how to laugh with me.

The rest of my family feels scared and nervous, half of them have lost someone dear to them in this battle and don’t want to do it again.

So to my family I want to give you peace: I pray that you have faith in God that I will fight through this and the peace of mind that I will be alright and you will not loose another family member to cancer.

The guy who loves me more than anything has been a rock and my strength through it all and I know this has to be the hardest for him…even though he will never show it.

So to him I want to give you my heart: I pray that you know how much I love you and want to give you all the love that you have given me in return to help me through this.

~

To all of you reading this…thank you for supporting me, my life and my blog. You all hold a place in my heart and I can’t thank God enough for everything he has given me. Thank you for letting me share my story with you. I will continue share along in my process. My hope is that one day this story will help someone get through what I have had to go through, because at the end of the day we all need support.

The experience has made me slow my life down and look at what matters in life. Your life suddenly shifts a different way than normal and your eyes open to realize how precious this life we have on earth is. The things that are truly important have taken priority and the unimportant things don’t seem to matter or to have any relevance. You realize there is not much to fear when faced with the greatest fear on earth. The cliches and quotes always seem to take heart when you read them, but the feeling of not knowing where your life could go is a whole new way to hit your heart. It truly has come as a blessing to me, a blessing that I hopefully will forever hold the same feelings. I wish I could give the outlook to each of you, without the fear, a gift to open your eyes to your life.

Life doesn't always go how you want it to. Chances are you might not live to 99 like you planned, your life just might stop short at 24. You might not get the opportunity to marry the love of your life or watch your children grow up. So make sure the ones you love are all that matter at the end of the day. The fear that holds you back from doing what you love and want to do shouldn't exist, don’t let it control you. Life truly is too short, don’t take it for granted and don’t wait for death to be the reason you open your eyes to it all. Take a second to appreciate the small things today and everyday from here on out.