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Wigging Out

When they say you lose your hair around the 14th day after your first chemo, you need to be prepared because they are absolutely correct.  It is a very tough reality to come to terms with, especially for me since I was an 80’s chick and my hair was a temple!

wigI really had no idea on where to begin with this project since I was still in a fog so a dear friend of mine did some research and found a wig specialist in Pittsburgh.  My hair had not fallen out yet and it was very beneficial for me to do this before it happened.  It was a fun girls day out where we went to see this amazing man who actually fitted many wealthy ladies in Pittsburgh when wigs were popular.  He told us stories about how the wig was a fashion statement and how he would have to travel with some of the ladies to make sure the wigs were placed perfectly on their heads for major events.   The wig I ended up buying is the  picture to the right, it was perfect for me.  The only problem is I couldn’t wash or style it. The need to feel human during the time you lose your hair is very important.  A wig made from human hair is a tool to do this.  Another friend of mine found a place that had these wigs provided by beautiful women who gave up their hair to help cancer patients feel good.   My second wig was spectacular – my true hair color and I could wash, blow dry, and style it in different ways.  Truth be told these wigs were not cheap and luckily I had AFLAC Cancer insurance which had a wig reimbursement.  A cheaper, good wig is surprisingly by Raquel Welch.  I found a couple different styles online that were very nice for when I wanted to change up my look from time to time.

Locks of Love is an amazing charity to always remember.  Several people donated their hair in my honor.  It is a special thing to do for children who suffer from hair loss, a kindness like no other.

When the 14th day happened it was the worst day of my journey that I remember.  The fall out starts gradually.  I remember laying on the couch and when I got up, I looked at the white pillow and hair was all over it.  It scared me and when it started happening more and more, I knew what I had to do.  The day I got my port placement was what prompted me to shave it off.  I came out of surgery and when I got up from my hospital bed, again my hair was all over my pillow.  I was terribly embarrassed and it was time to face to cold hard fact that my hair was leaving me.  I didn’t want to go to a beauty salon, it was too upsetting, so my husband assisted me in the process with his hair clipper.  I watched my hair fall off into the sink – many years of hair spraying, curling, coloring, and overall abuse.  Surprisingly I didn’t cry, I was numb and the buzz cut was not that bad.  Although I should’ve shaved it bald because it becomes like a prickly cactus when you are sleeping!  I walked out of the bathroom and the pain from the port surgery started to hit me and I realized this whole cancer situation was not getting any better, it was getting worse.  I had a foreign object inside of me that threaded from my jugular vein down into my chest, I was losing my hair, and the chemo drugs were taking full affect of my body.  I crumpled to the ground and just wanted to leave the earth.  It was a terrible moment in time, one where I was ready to accept defeat.  It was also a moment when I summoned my strength and felt a power above me that said get up and fight.  I found my faith again and my will to live, it was the moment when I became a warrior.

To be clear, it’s not only your head hair you lose, it’s every single hair on your body.  You don’t realize that the tiniest of hairs such as your nose hairs, do very important jobs for your body.  Grab the kleenex becase your nose runs alot during treatment!  I think the toughest areas are eyebrows and eyelashes.  Losing these certain facial features really made me look like an alien.  There is another wonderful charity  thatI did not utilize and wish I did, Look Good Feel Better.  I have always been a makeup junkie and thought I could easily do my own make up but when you lose these pieces, it’s very hard to navigate how to place them back on everyday.   I remember coming home from work some days and my one eyebrow would be smudged, wig lopsided, or my fake eyelashes half hanging off.  It was too funny, I really learned how to laugh at myself and find the humor in it all!

Getting over this hump in the cancer journey was very tough but it was liberating when I did.  The hair eventually all fell out and I learned to live with it.  It actually made my life easier and cut my time to get ready to for work drastically.  Although, when I looked at myself in the mirror, I felt like a cancer patient with a wig on.   When I felt comfortable with my new self, I shed the wig.  Plus it was just too hot & uncomfortable to wear them in the Summertime.  I took pride in my warrior look and started to wear baseball hats instead and cute earrings since you could really show them off.  I still have my wigs, not sure why, so I have them stored in shoe boxes at home and it scares the living daylights out of me when I forget they are there and I think an animal got into my closet!  Wigs me out 🙂

Secret Cancer Society

Maybe I lived with blinders on but when someone had cancer when I was young, it was a word I associated with death.  I had many aunts/uncles, & loved ones before me that I knew succumbed to the disease but I was not aware of the survivors and what it entailed to fight it.  When you are diagnosed, you become a member of a secret cancer society as I call it.  No one knows what you are going through except those members of this society.  We are all part of a club, kind of kept in secrecy, housed in a cancer center for long months battling our hearts out.  Then when we do survive and thrive again, we are told to go on with our normal lives, like nothing happened.

It was day one of my chemo treatment and it was time to meet some members.  I got up in the morning and packed my bag.  This is where the seed for our Blessed Bags was born.  The contents for my initial bag was for me to keep occupied and comforted. I packed cards (my husband and I loved to play Gin), snacks,  and anything I could find that would help me during the 3 hour infusion time.  It was a scary morning, the fear of the unknown was happening and it was very hard to stay positive.

As I walked into my cancer treatment room at AGH, my new world began.  I never knew how chemo worked and seeing all these patients sitting in leather lounge chairs, hooked up to bags of medication, looking sickly and pale opened my eyes to the reality of cancer.   As I took my chair, I anxiously awaited my turn for the nurse to insert my IV and begin the process.  I did not have the port yet, so one of my worse fears was about to happen, an IV needle inserted into my vein.  As she begun to insert the needle, my heart started racing, darkness surrounded me and yep, big sissy I am, I passed out cold!  I awoke with nurses and my husband fanatically trying to awaken me, tears streaming down my face.  Not such a warrior just yet, just beginning to earn my battle scars!

Once I was comfortable the infusions started.  I did not know that they give you 1/2 a bag of Benadryl before the chemo drugs are administered.  This is to help with any allergic reaction to any of the drugs.  Great news for me, I was immediately asleep, bad news for my husband who had to sit in a wooden chair for 2 hours before I awoke.  Once I was awake I looked around to observe what was going on around me – some were pros and some were newbies like me.  Some were very sick, some seemed healthy and in good spirits.  Some had friends/family with them, then there were the ones that had no one.  This broke my heart, you really need to have a support person with you because you are dealing with a range of emotions and the reality of what is happening will drive you nuts.

I have such a great appreciation for nurses, they are such angels during your battle. It amazed me how they go to work everyday in an environment so grim but they always kept on the bright side to keep us comfortable.  I honor my AGH team and everytime I visit I make sure to hug them because I wouldn’t have made it without them.

newyears

As I walked out and said good bye to my new society members and prepared for the effects of the drugs, I looked back and smiled knowing these people were my new friends.  They would help me to defeat this beast inside me and I was not so scared anymore. I post the picture to the left because this was two days after my first chemo on New Year’s Eve 2010.  Surprisingly I had no side affects yet and was feeling pretty good at this point. I had just cut my long hair in preparation for the 14th day after my first chemo, losing my hair.  Something so dear to me and identified me as a human was about to leave me and change me into someone I could not bear to look at in the mirror, an alien – the new Jessica…

Facing All My Fears

I title this facing all my fears because if anyone knows me, I was terrified of doctors and needles before all of this cancer crap.   I had to face so many fears that the reality of cancer treatments bring.  Being poked and prodded becomes a big part of daily life.  Blood tests – I am now a pro since I get them every 6 months.  I just drink lots of water before, whip out my arm, make a fist, and piece of cake!  Surgery is a breeze, after having 6 of them under my belt, I look forward to some well needed sleep then waking up with a nice box of juice in my hand.  All modesty is gone, I no longer care about the little paper robe on doctors appointments.  I now proudly display my breasts without any sense of embarrassment.  You are constantly exposing them every where you go during procedures and appointments so much so that I began to feel like a freak show or some type of specimen.  I remember one appointment there were interns attending with my doctor and they all came in to observe my little tumor.  This is when I realized it wasn’t little, it was big and a serious problem.  Had I did a self exam 6 months before, I would’ve caught it earlier.  Another take away, do your self exams!

I had a scare after my biopsy when my breast surgeon did a mammogram.  My breast was so bruised from the initial biopsy that it caused my sentinel lymph node to look enlarged.  They had to biopsy my lymph node.  I was still traumatized from the breast biopsy and knew that this will be very painful.  Sticking a long needle in my arm pit and lymph node, no way!! I remember sitting in the waiting room by myself while they prepped the surgery room. I was terrified, just sobbing. I asked for them to bring in my mom and I just laid in her arms never wanting to let go.  It was a tough procedure and prayers answered, the lymph node did not have cancer.  This is another lesson:  lymph nodes are your body’s little filters.  If a cancer cell is present, then chances are it has been filtered to other parts of the body.  One fear down many fears to conquer ahead of me.

Fear 2:  Once I was told I was going to have to do 8 months of chemotherapy, I was told I had to have a port placed in my chest so the needles from the IV’s didn’t blow my veins out.  Can they terrify you anymore??  I remember the day when the doctor told me about the port process.  I sat and shook all over, cried hysterically and said no way was I going to do that.  Day of the port surgery, my dumb self ate breakfast which means I had to be awake through the whole surgery!  I didn’t feel a thing but had a fun conversation with the doctor and staff during the 2 hour process.  They showed me the device and explained how it worked.  Although it was a weird and foreign object, it was the best tool for me during the treatment process.  It becomes part of your body and you learn to work around it.  I had to get bathing suits and tank tops to cover it after a child ask what was protruding out from under my skin.  Laughing, now that I think about it, I love kids and their honesty, it’s refreshing to be that young and learning about the world.

For anyone getting ready to go into chemotherapy, if you have to do extensive treatments, get the port.  Ask a doctor to prescribe you a numbing cream and put a dab on the circle with a band aid over it an hour before your treatments.  You won’t feel anything when the needle goes in!

So now that I faced a big fear of the port, it was time to begin my treatments.  The plan was neo-adjuvant treatment to shrink the tumor which consists of: chemotherapy, surgery, radiation, then Herceptin for a year.  They were going to blast me with an arsenal of drugs because I was young and in good shape.  4 rounds of the standard chemo, then all targeted therapy drugs weekly for 5 months in the hopes the tumor dissolves so they can save my little booby.  Can my body take it?  Will I fall and accept defeat? Onto fear 3: Chemotherapy

 

 

 

 

Prepare for Battle

When you are diagnosed with any type of illness, you really need to prepare yourself for battle.  How do you do that?  Search the internet!  NO do not do this – it will make you crazy!  I would look up one symptom and immediately thought my cancer had spread.  At one point I thought I had throat, stomach, and any cancer you can think of!  I would also read stories of women with a similar diagnosis who passed away and thought I would be exactly like them.  One valuable lesson I learned is that your journey is not the same as someone else’s and may not be the same outcome.

My breast surgeon, who is the most amazing man and doctor, was the first to tell me the pathology of my breast biopsy.  I did not understand this specific detail in the cancer game.  I thought, okay I have breast cancer, let’s just get it out of me and be done!  The pathology of your breast cancer is a critical piece in how they are going to treat you.  In the breast cancer realm, the most treatable is being ER+PR+ & HER2-.  My luck I was triple positive, which means that HER2+ diagnosis meant it was very aggressive and deadly.   So much so, when I was entertaining surgeons, one told me that in not so many words that I was going to die!  Another lesson, make sure you take time to get several doctors lined up and pick the one that is the best for you and one that you trust with your life.  The reason I picked my surgeon and oncologist is because they believed in me and that I was going to beat cancer with their help.

I had to learn what this HER2+ diagnosis meant and the internet did come in handy but at a very dark price.  There is a great movie I found called Living Proof, about the amazing Dr. Dennis Slamon who invented the drug Herceptin that saved my life and many countless HER+ patients.  It was hard to watch and I cried the whole time because had that drug not been developed, I would’ve been one of those women who lost their lives within 6 months.  I also used the internet to seek out other women with my diagnosis and found an amazing website of HER2+ members called www.her2support.org.  This was a great tool for me to connect with woman like me to get advice and vent.  I am now a proud senior member of the site but unfortunately lost a lot of fellow sisters that helped me on my journey.  I highly recommend if you are diagnosed, joining a support group – it helps immensely to meet people who are dealing with the same issues as you.

Another great tool in the battle is your family and friends.  My husband’s daughter is a great researcher and took the task to find me the best surgeon and oncologist in the Pittsburgh area.  Utilize your family/friends, they want to do whatever they can to help.  Lean on them and do not push them away – they are your soldiers who will never let you down during the journey.

Staying positive is the most important tool in the cancer battle, although this is a very tough tool to master.  I highly believe that 70% of the cancer battle is the mental attitude. I have always been a positive person and that was my advantage – yes I had my bad days and pity parties for myself, but I always went to bed knowing tomorrow is a new day. Time to regroup put my big girl panties and boxing gloves on and enter the ring again!

Where do you begin?

The beginning of the journey is chaotic and you are really not sure where to begin.  Telling your family and friends is probably the first step in the process.  The look on peoples faces when you say “I have cancer” is haunting.  I was told by my doctor to pull my car over while she told me I had breast cancer.  Luckily I was in the parking lot of my office building.  Not the way to tell someone they have cancer over the phone!  As I sat there and heard the words, I felt a chill unlike any other possess me (funny as I type this, I am shaking).  I guess this is my end, how does anyone survive cancer?  My husband at the time called immediately and I just uttered the words as tears streamed down my face.  I had to now go into my office and face my family.  I work for my family business so I had to tell my parents and brother immediately as they were waiting anxiously for my results.  As I stood in the hallway, my world just crumbled around me but the loving embrace of my family was what comforted me in that moment.  All our employees shared in the experience, it was a terrible day but one that began my journey.

Once you know you have cancer, the craziness of the medical journey also begins.  Always have someone with you at appointments to document what the doctor says, because you are in a daze and one thing goes in one ear and out the other. Picking your medical team is your first priority and this takes a bit of time since you want to make sure you have the best team behind you.  When your team is in place, then they order a battery of tests to see if the cancer has spread to other parts of the body.  This part is terrifying  and the wait to get the results consumes your mind.  Praying is a good tool during this time, this helped me immensely to stay positive.  Once the testing is complete, the medical team will have their battle plan mapped out.  I was lucky that my tests results were negative and the cancer was only isolated to the breast.  So now I had to wait a month to start treatment which was hard to comprehend because I just wanted to attack the problem immediately before it got out of control.

The worst was yet to come when I got the results from the breast biopsy, which is something I had no clue about at the time.  Once I understood my results and the harsh reality of my diagnosis – how could I ever survive this?