Scar tissue goes POP!

Yet another restless night.  I'm becoming quite the night owl.  This Thursday will mark my eight week anniversary since my mastectomy.  Sometimes it seems surreal, but I am becoming quite accustomed to my "new" body.  I started a diet two weeks ago and have lost about 7-8lbs.  I'm eating healthier and I feel good.

Today I had my 6th fill in my expanders.  I am now up to 700cc's in righty and 690cc's in lefty.  Why the difference you ask?  Today I went in for my weekly fill with nurse Debbie.  The fills take about 30 minutes, but aren't painful.  Debbie and I share a nice conversation that ranges anywhere from talking about yoga, our kids and our husbands to how large I want to go with my expanders.  She normally fills me with 50cc's in each side, but last week I asked her if we could try more since I wasn't having much pain anymore.  Last week she put 75cc's in each side.  Lefty was pretty sore for about two days, but I was feeling better by Thursday.  Today she put the same amount in each side.

Debbie filled righty first - no pain at all.  In fact, because I am completely numb where the port is I felt nothing at all.  The port on lefty is up a bit higher where I still have some feeling, so I always feel her inject the needle.  I still had a bruise from last week and so it hurt more than usual when she started filling me.  I was trying to be a trooper and not complain about the pain, but the more she pressed down on the pump the more I could feel my skin stretching and the pain starting in my back.  Still, foolishly, I didn't say anything and continued on with our conversation.  When we had about 10cc's left to go she stopped for a second because her hand was hurting her.  I asked her if we were almost finished because I was feeling the stretching "a little bit".  She said we could stop, but since we only had 10cc's left to go I said to finish it.

Then I heard, and felt, a big snap in chest.  As soon as Debbie started to fill again I was in excrutiating pain.  I cried out.  Of course she stopped immediately.  It felt like something broke in the upper left part of my breast.  Then the pain shot up my shoulder and down my left arm into my fingers.  The pain brought me to tears.  Debbie explained to me that it was most likely scar tissue tearing from being stretched.  She offered to take some of the saline out, but I just wanted the needle as far away from me as possible.  Once the pain began to subside I went home and promised to call her if I wanted her to take some of the saline out.

I was still in tears when I got home, which scared my husband.  The pain was getting worse.  I decided to take a percocet to see if that would ease the pain.  It certainly did.  Unfortunately I didn't get any rest because Charlie wanted me to play with him all afternoon when he got home from school.  Once the percocet wore off this evening they pain was back.  I couldn't get comfortable.  If I laid on my back the pressure of the expanders made it hard to breath.  I couldn't lay on my side without pain shooting down each arm.  Finally, around 11:00pm I went back to my trusty old recliner that helped me sleep through the first two weeks post-op.  I slept for about two hours when I woke up in pain again.  Then Charlie woke up and wanted to cuddle.  (I have to admit, his cuteness helped.  I said, "Mommy's boo-boo's are hurting me.  Would you rather cuddle with Daddy so I cant get better?"  He said in his sweet little voice, "Nope.")

So. here it is 2:23am and I resorted to another percocet.  The pain is now tolerable, and Jason rubbed my arm to ease some of the tension.

As I've said before, you can't ever be truly prepared for all of the aftermath of a surgery like this.  There are good days, and there are bad days.  I've been blessed with mostly good days, but today has been quite trying.  I'm exhausted (what else is new).

In other news, I received my business cards from FORCE, and I am very excited to be an Outreach Coordinator here in Tampa.   I will post more about that (hopefully) tomorrow, as long as this pain has subsided.

Goodnight, everyone!  Let's hope these pain meds help me get some much needed rest.

Xoxo

My Angel in Heaven

It's the first day of spring!  The day that many people (in the Northern Hemisphere) have been longing for all winter.  Spring is the season of rebirth.  The harsh winter season is behind us and Mother Nature nurishes the earth with a rebirth of beautiful flowers. 

For me, spring is a constant reminder of breast cancer's unforgiving nature.  Twenty-six years agotoday my beautiful Aunt Rainy succumbed to her battle with breast cancer.  For a three-year-old, I still remember that day vividly.  I was walking down the stairs at my Mom-mom and Pop-pop's house holding my mom's hand.  I was wearing pink pants and a white shirt.  My Pop-pop answered a phone call and then told us that Aunt Rainy had taken a turn for the worse.  Everyone cried.  I didn't fully understand what was going on, but I knew it couldn't be good. 

Aunt Rainy was the first person in my immediate family to have breast cancer (that we know of).  Genetic testing wasn't available in the 1980's, so she didn't have the option to prevent cancer.  I've witnessed first hand what breast cancer can do to a family.  My mom lost her only sister.  My Mom-mom couldn't watch a home video of Aunt Rainy without crying for days.  Although I was very young when the Lord called Aunt Rainy home to Heaven, her memory lived on through the stories that my Mom-mom would tell me as I was growing up. 

I cannot stress enough that if you have a strong history of breast or ovarian cancer in your family, please consider genetic testing.  Hereditary breast and ovarian cancer pops up earlier in life than the general population.  Genetic screen potentially saved my life.  Under the Affordable Care Act, genetic testing for breast cancer will now be covered according to this news article. 

http://news.yahoo.com/breast-cancer-genetic-testing-gets-covered-health-care-234648209.html

 Aunt Rainy did not have the options to prevent breast cancer that we have today.  Her legacy will live on through me and I will do my best to spread the word that prevention can save lives.  She is my angel and my guardian, and although my family (her daughter, my mom, my Mom-mom...) miss her tremendously, Heaven is a little bit brighter today as she smiles down upon us. We miss you Aunt Rainy! 

In loving memory of Lorraine Marie Castellucci 1948-1987.

Increase in Mastectomies

No one has questioned my decision to have a prophylactic mastectomy. Nobody has told me that I was making a horrible decision or that I was crazy for doing so. Perhaps once I tell them about my family history of breast cancer and that I *had* an 87% chance of getting breast cancer they realize how serious having a BRCA1 mutation is.

Not all women are as fortunate to have the great support that I've had. There are many critics opposed to mastectomies, whether they be preventative or not. Since 1996, when genetic testing for BRCA mutations became available, there has been a large spike in women choosing mastectomies over lumpectomies or doing it preventatively. This article from CNN goes into more details on.

http://www.cnn.com/2013/03/13/health/double-mastectomy-rates-up/index.html?hpt=hp_t2

Having an aunt lose her battle with breast cancer in her thirties and seeing my Mom-mom battling breast cancer for the second time at 90-years-old, plus having a BRCA1 mutation that was the cause of their suffering, made having a prophylactic mastectomy a no brainer. Don't get me wrong, it was not an easy decision to surgically remove my breasts. There was a lot of research involved and many restless nights crying over what felt like the inevitable. When you're told that it's not a matter of if, but when you will get breast cancer, you begin to reprioritize your life. Do I want to die from this disease? No. Do I want my son to grow up without a mother?  No. Plain and simple, I don't want to die from breast cancer.

There seems to be this stigma in society that breasts are what define a woman. It takes a strong woman to decide to remove her breasts, and that's might intimidate some people. For example, when Miss Washington DC, Allyn Rose, opened up about her decision to have a prophylactic bilateral mastectomy once her duties with Miss America were complete, people bombarded her facebook page pleading with her not to do. There was a lot of support for Ms. Rose, but I was shocked to find that mainly men were practically begging her not to have this surgery. Their reasoning ranges from "your're too beautiful" to "eat an apple and a carrot everyday and you won't get breast cancer." I'm sure standing on my head whilst balancing balls on my nose and wearing a green tutu will prevent us from getting breast cancer too.

In my opinion, the reason we are seeing an increasd in mastectomies is because there is so much more information out there today than there was twenty years ago. Plastic surgeons can do amazing things with reconstruction techniques so that women don't feel so "deformed" or "unwomanly" after this surgery. Many women who carry a BRCA mutation have witnessed loved ones suffer from breast and/or ovarian cancer. Now those women have a chance to stop what may be the inevitable.

A quote in the article I mentioned earlier states, "We want quick solutions, and we expect there's an answer to every problem. In many cases these women don't need double.

My choice to have a mastectomy was not a quick solution, and it certainly was not an answer to all of my problems. If someone told you that if you get on an airplane you have an 87% chance of that plsne crashing with you in it, would you fly on that plane? I wouldn't. My breasts didn't define me as a woman, but they did consume me with fear. Maybe I didn't need to have a mastectomy, but I certainly didn't need to have my life taken from me by breast cancer.

Until next time...

Xoxo

Fills and Enlightenments

It's been nearly six weeks since my prophylactic mastecomy. I started my fills in my expanders three weeks ago. I can definitely notice a difference and dont look so unproportionate in shirts. When a plastic surgeon does fills he is injecting saline into a port that lies just beneath your skin. By having fills done once a week it stretches your skin and muscle (the expanders are placed behind your muscle since the skin is so thin after a mastectomy). Some women opt to have direct-to-implants, but I wasnt a good candidate for that. If I had chosen that route I probably would have ended up smaller thsn I was before surgery. With expanders I can essentially choose what size I want to be.

 

Fills dont necessarily hurt when the doctor is doing them. The needle looks a lot worse than it is. I usually don't feel the injection on my right side since I am still numb there. I do feel it on the left,  but it doesnt hurt. The doctor has been injecting 50cc's on each side during each visit. Since we are stretching my skin and muscles I am usually pretty sore for about a day after my fills.

 

Going through this whole process has been very enlightening for me. I could've had breast cancer, but I don't. I have been given a chance at life that so many women don't have. I need to cherish everything I've been blessed with - my husband, my son, my family and friends.  We only get one chance at life, so we shouldn't waste it wondering what could have been or feeling sorry for ourselves.

 

Here is Charlie at three-months old.  He's given me my strength and courage throughout this journey.  He gives my life great purpose!

 

Until next time... xoxo

Post-Mastectomy Blues

For nine months I prepared myself both physically and mentally for my prophylactic mastectomy.  I *tried* to eat healthy, running was my outlet for stress and I found an amazing support group of other previvors.  I did plenty of research on the surgery and my doctors.  I attended the FORCE conference in October.  By January I was 100% ready for my surgery.  I woke up from my surgery smiling and so proud of myself that I conquered the biggest challenge of my life.

What I wasn't prepared for was what came after my surgery - the pain, the lack of control, the helplessness... I couldn't make meals for myself.  I couldn't sit up by myself.  I could barely walk by myself.  I couldn't dress myself.  I certainly couldn't bathe myself.  I was taking pain medication every three hours.  I even ran a fever the first night I was home.

The Monday after my surgery I went to see Dr. Redmon, my plastic surgeon.  The car ride to his office was painful.  Every turn and every bump sent shocks of pain through my body.  I hadn't showered since Wednesday and felt disgusting.  When he took off my surgical bra I could not look down.  I didn't want to see.  Jason was with me, and he was so brave.  I broke down and cried.  I still had my drains in.  I felt miserable. 

I finally mustered up the courage to peak at my "foobs" later that night.  They really didn't look that bad with the steri strips covering my scars.  When I tried to sleep that night I was overcome with excrutiating pain.  It felt as if my drains were being pulled.  I kept my drain bulbs in a fanny pack, but other than that they were just hanging from underneath my arms.  I cried and cried.  My mom wrapped gauze around me to keep the drain tubes close to my sides so they wouldn't pull.  There I was standing in the kitchen with no shirt on, completely helpless and relying on my mom and Marcia to help me.  As I'm crying, Charlie came into the kitchen and said, "Mama boo-boo's."  He took my hand and said, "All better."  That sweet little gesture from my two-year-old helped me fight through that pain.

On Wednesday Dr. Redmon took my drains out.  It was the best relief.  I was finally able to take a shower.  I couldn't do it by myself, and Jason had to wash my hair for me.  Giving up control over something we all take for granted like washing our own hair was tough.  For the rest of the week I continued on my regimen of pain meds.  My mom stayed until the next Sunday (February 10th).  I was so spoiled when she was here.  She cooked me yummy vegetarian food and made sure I was well taken care of.  I was able to get out of the house a few times to go for a walk or to the store, but I couldn't walk very far without the pain kicking in.

I was very scared when my mom left, but Jason and Marcia have done a great job taking care of me.  The second week was still tough, but not quite so bad as the first week.  Most of the pain was in my back, but I was still feeling very optimistic about my healing.

That Friday I went to the chiropractor to see if he could help me with my back pain.  Immediately after my adjustment and therapy I felt nauseous and the pain in my back became very intense.  I ran a fever of 101.5 that night.  I called both Dr. Redmon and Dr. Campbell and they agreed that it doesn't appear to be an infection.  So I took some tylenol and my fever subsided almost immediately.  By the next day my back pain was practically gone.  However, I spent the rest of the weekend with an upset stomach.  By Monday I wanted to try to wean off of my pain meds.  I've been taking Soma (muscle relaxer) and Percocet as needed.

That leads me to right now.  It's 1:30am on Saturday morning and I cannot sleep.  I haven't been able to sleep all week.  When I do sleep it's in tiny increments.  One night I slept for twenty minutes, then was wide awake for twenty minutes.  That cycle continued for three hours.  The only time I get decent sleep is when Jason is home with me.

Physically, I am exhausted.  Mentally, my mind won't stop racing.  I find myself staring off into space and sometimes crying.  I cannot figure out why.  I am happy with my decision to have this surgery.  I don't have to live in fear of getting breast cancer anymore.  So why am I so sad?

When Charlie was born Jason and I had spent nine months preparing for his arrival.  We went to a parenting class, and I read up on as much mommy information as I could possibly find.  I knew that there would be sleepless nights and that a baby is a lot of work.  What I wasn't prepared for was the difficulty of trying to breast feed, the lack of sleep, exhaustion and having this tiny human being's life in my hands.  I was overwhelmed at first, but then with Jason's help we figured out routines and life with a baby became easier.  I feel as though the emotions I have been feeling since my PBM are very similar to what I felt after Charlie was born.  I spent nine months preparing for the surgery, but I really had no idea what it would be like after the surgery because I hadn't witnessed anyone else go through this first hand.

I feel guilty for having the "post-mastectomy blues".  There are women out there who have it a lot harder than I do.  Some women have had serious complications with their surgeries.  Some women have breast cancer.  I don't feel sorry for myself.  In fact, I feel very blessed.  I am just trying to figure out how to live my life without the anxiety of having to get mammograms and MRI's and waiting for the results fearing that they will come back with bad news.

I saw my breast surgeon, Dr. Campbell, on Tuesday.  I tried to go in with a brave smile, but as soon as she walked into the room I started to cry.  Dr. Campbell has a way to make you feel comforted (which is one of the reasons why I call her an angel).  Today I received a letter from her in the mail.  It was just what I needed to reassure me that I made the best decision - not just with my surgery, but with my choice in doctors as well.

I'm not looking for pity.  I'm just trying to make sense out of these new emotions, continue on my journey and remember all of the reasons why I am blessed.  Just for fun, I would like to name some of them:

-I have the best mama.  If she is reading this, I want her to know that I appreciate her more than I can ever say.

-I have a wonderful husband who has been more supportive and loving than I could have ever asked for.

-I have awesome friends.  Thank you all for supporting me and being there for me.  The overwhelming amount of love, gifts and kind words have helped me through the toughest moments along this journey.

-I have doctors who have helped me feel comfortable in my decisions and are taking great care of me.

-I can look forward to watching my son grow up without the fear of breast cancer taking that away from me.

Giving up control and the unknown can be very scary.  But I must have faith that God has great things in store for me.  When one door closes another opens, and on the other side of that door is a beautiful future in store for me and my family.

Goodnight :-)

I'm Alive

I am nine days post-surgery, and these have been the toughest nine days of my life.  Each day gets a little better, but nothing could have prepared me for the intensity of the pain.  Regardless, the moment I woke up from surgery I knew that I was 110% confident in my decision to take charge of my destiny.

I was relatively calm the morning of my surgery.  I woke up, curled my hair (didn’t use any product), and Jason and I were off to the hospital.  My mom couldn’t come with us because she had to stay home and watch Charlie.  He wasn’t feeling well and had to stay home from preschool.  A cameraman and producer from ABC news in Tampa met us at the hospital for a quick interview.  I really don’t remember much about the interview, but they were very kind and Jason was being funny.

Around 9:30am I was in my lovely hospital attire and my nurse, Stella, was inserting my IV.  My nerves were starting to get to me so she gave me something wonderful to calm them down.  Because Dr. Campbell was taking lymph nodes I had to be injected with a blue dye so she could find them.  A nurse came in and told me she had to inject four needles with the blue dye into each breast.  Yikes!  It didn’t hurt.  Each time the nurse injected the needle she would say, “Bee sting… ouch ouch ouch… all done.”  It helped!

By 11:00am, Dr. Campbell came in to say hello, she taped my angel worry stone to my arm band, said a prayer and wheeled me off to surgery.  The anesthesiologist came by to say a few words to me.  The last thing I remember was her telling me that she was injecting me with something.  I asked, “Will this put me to sleep?”  She told me no, but that was all that I remembered.

Two seconds later I woke up and saw Dr. Redmon looking over me.

“Hey, is that Dr. Redmon?” I asked.

“Yes it is,” a nurse said.

“I’m alive!” I said.

The next two hours consisted of me dozing in and out.  I may have introduced myself to the nurse, in case she didn’t know who I was.  Then they were rolling me off to my room.

I first saw Jason and my mom.  Behind them were my “Hags”, JoEllen, Cheri and Hayley.  They all came to my room with me.  I felt really good.  I wasn’t in much pain.  Life was good.  I may have said something about JoEllen taking me to England to see my friend Vikkie, and Jason was a doctor – McSteamy.  Either way, the first night was pretty good.  Jason even slept overnight with me since I was in a private room.

When I woke up the next morning I was very itchy.  My mom brought me a back scratcher.  I believe it was from the morphine.  Dr. Redmon came by to see me and told me that he was able to fill up my expanders to 350cc’s.  He said I am probably about halfway through my fills already depending on how big I want to go.

I had a few visitors throughout the day.  Mary came to see me at lunchtime and brought  me beautiful roses.  JoEllen and Cheri came to see me.  They made me a collage of pictures of all of us that said, “All I need is love, drugs and Hags”.  Debi visitied me and brought me yummy honey roasted sesame sticks.  Leona came to visit and brought me a granola bar and some other snack.  I felt very loved.

Dr. Campbell came by to talk to me about the surgery.  She said everything went well.  I had to breathe into my spirometer and she cheered me on.

Jason stayed with me again that night, and I was even able to get up and walk around in the hallway.

All in all, right after surgery I felt pretty darn good.

Saturday was a different story.  But I will blog more about that later…

"All I need is love, drugs and Hags"

 

Dear Aunt Rainy...

Dear Aunt Rainy,

I was only three-years-old when you passed away, but I still have so many wonderful memories of you.  I remember swinging on your porch swing with you.  I remember playing with your dog Bruno.  I remember getting stuck in one of your window panes that separated the living room and dining room.  You came running down the stairs with your hair still up in a towel to "save" me.

I also remember when Mom-mom tried to explain to me why you didn't have your beautiful hair anymore.  "It's because Aunt Rainy is very very sick," Mom-mom told me.  I didn't understand why you were so sick, but when I would visit you at the hospital you seemed so weak and couldn't play with me.  Then came March 20, 1987.  I was wearing pink cordoroy pants and a white tee shirt with stars on it.  My mom and I were walking down the stairs when Pop-pop got a phone call.  Everyone started crying and told me that you went to Heaven.

You battled breast cancer for four years.  You were such a fighter, but in the end cancer took you away from our family.

When I first found out about my BRCA1 mutation I wished so bad that I could talk to you about it.  I wanted to know what you would have done if you knew about our genetic mutation.  But I couldn't ask you, and I will never know what you would have done because you're not here.  Because you aren't here, I have my answer.

Here I sit, two days post PBM and even though the pain from the mastectomy and expanders is very hard to tolerate, I know I made the right decision.  Sadly, you didn't have that opportunity to save your life.  I hope you are proud of me, Aunt Rainy.  I know you were by my side in the operating room watching over me.  You're my angel.

XoXo