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

Bring on February!!

I was going to post about my preop appointments and my interview with Linda Hurtado, but I would rather write about my feelings about tomorrow.  I want to remember these feelings and be able to look back in a few months and realize how far I've come.

Tomorrow is my big day.  Surgery is scheduled for 11:00am with Dr. Campbell, then Dr. Redmon will come in to do the reconstruction/expander placement.  I'm nervous, scared, melancholy, and ready for this.  As ready as I can be, really.

January has been the most challenging months of this journey so far.  I started off the month by battling the flu and my insurance company and the hospital about my deductible.  Once that was behind me I got sick again and have had a lingering cough which is MUCH MUCH better.  As I write this I am giving myself a nebulizer treatment.  Work has kept my mind off of the surgery by keeping me busy.  I haven't been able to run this month because of my colds.  Today Charlie got a fever and cough.  The poor little guy wouldn't take any tylenol and was just miserable.  He will probably stay home from school tomorrow.  With all of those challenges, it's only appropriate to end January with my biggest hurdle of them all - my prophylactic mastectomy.  I know I can do this.  I  know God and Jesus are on my side and with my doctors. 

February 1st will be a new start for me.  With February will come new obstacles on my road to recovery.  I will be living my life without the 87% chance of getting breast cancer.

XoXo

What's I'm wearing to my mastectomy.

Envision It...

I can envision myself a week from today sitting in my hospital room, my husband by my side, watching movies and enjoying my pain medicine.  A week from today my prophylactic mastectomy will be behind me.  I will have jumped the first and biggest hurdle in my BRCA journey.

January has been an insane month.  Not to focus on the negative, but let’s just recap the challenges I have faced this month.

1.       Dealing with the hospital and my deductible.

2.       Dealing with insurance and my deductible.

3.       Having to pay my $2,500 deductible up front and then learning from my plastic surgeon’s office that I owe them $400 and they want it now.

4.       Getting the flu.

5.       Being nauseous from tamiflu.

6.       Coughing my lungs out.

7.       Working, even with a 101.5 temperature.

8.       Getting work caught up for while I’m out.

9.       Getting sick again with some sort of upper respiratory thing.

10.   Cough some more.  Can’t breathe.

11.   And then the drama of the Young Previvor’s Group being deleted from facebook.

As I read that list, all of those things seem so trivial.  But when you add to that a prophylactic mastectomy, things can make you a little crazy.  I’m trying to stay positive and look on the bright side.  My deductible is paid, in full.  My plastic surgeon is paid.  I’m off the tamiflu and the zpack.  All I need to do is get rid of this cough, which is (thank you, Lord) getting better each day.  Work will be there when I get back.  The show will go on.  I’m starting to believe that all of the stresses I’ve encountered this month happened because I needed something to stop me from thinking about my surgery.  Really, I’m at the point right now where I just want to get it over with.

The mama J is coming down on Monday.  I work two half days next week, then I am off on Wednesday, and then it’s surgery day!!

I had my preop at the hospital on Wednesday.  For the most part, it went well, except for my mini breakdown.  I started off at registration filling out forms and signing papers.  Then I was led upstairs to the preop area and met with two nurses.  They made me feel comfortable by making me laugh.  When I whipped out my lunch bag filled with all of the medication I am currently taking, it took the nurse about 15 minutes to enter everything.  I went from no medication a year ago, to a laundry list of it today (most of it was from my cold).

The nurse had to take my blood, and I asked her to use my right arm.  A few months ago I tried to donate blood.  The girl was new and tried to get blood from my left arm, missed my vein and was digging around inside of my arm to find it.  It hurt so bad I nearly ran out of there crying and hadn’t given any blood.  The nurse on Wednesday tried to get it from my right arm, but I moved.  And it hurt.  So another nurse took it from my left arm and was so fast and asking me questions about my family history, but everything became just mumbled to me.  Then it hit me.  I’m about to have surgery!  I never had surgery before!  I broke down and cried.  The nurse hugged me and Jason was so supportive.  I cried for just a minute.  Then I did my Jack Shepard from Lost routine and moved on.

After the nurses finished with me, I was sent down for a chest x-ray.  Since I’ve been sick, the doctor wanted to make sure that my lungs were clear.  They are!  Just need to stop this cough!!

So, I am going to enjoy this weekend with Jason and Charlie, relax, get well and prepare for next week!

Save "Young Previvors"

At the beginning of my "BRCA journey" I felt so alone.  Everytime I mentioned BRCA to a family member or friend they would give me a sympathetic look but didn't really know what to say.  I wanted to meet someone who was in the same situation that I was in.  Someone who had the BRCA mutation and was faced with the difficult decision on deciding what to do with this knowledge.  I felt like I was the only person in the world who had to make this decision.

I reached out to Susan G. Komen who introduced me to FORCE (Facing Our Risk of Cancer Empowered).  Through FORCE's message boards I realized that there is a whole community of women out there with a BRCA mutation.  There was such a wide demographic of women... some had breast cancer, some did not, some were old, some were young.  The women who did not have breast cancer but chose to have Prophylactic Mastectomies even had a name for themselves - Previvors.  I suddenly realized that I am not alone!  I am a previvor!

I mad a wonderful friend through the FORCE message boards.  Her name is Vikkie.  She's my "British friend".  Vikkie was my first "BRCA friend", a girl my age with the BRCA mutation and about to undergo a PBM.  I truly believe that we were meant to be friends, even though we're an ocean apart.  Vikkie is having her PBM on February 12th, so we will be recovering together!

In September I heard about a Facebook Group called "Young Previvors".  Since this is a closed group I sent a request to join.  Immediately I found an overwhelming amount of support from girls who were Previvors and Survivors.  Some of the girls had undergone prophylactic mastectomies, oopherectomies and hysterectomies.  Others were choosing surveillance.  This group is a safe haven for nearly 200 women to express their fears and anxieties associated with having an increased risk of breast and ovarian cancer due to genetics. It is a private place where we leave our differences at the door. There's no judging, no criticizing. Just love and support from women who understand. I've made so many friends within this group. I don't think I would be nearly as confident in my decision to have a prophylactic mastectomy if it hadn't been for this group.

Today, January 25, 2013, facebook deleted "Young Previvors". The details as to why the group was removed are unknown. The admin, along with many of the women in the group, are fighting with all our might to get our page back. That's what previvors are - fighters.

Please take a moment to like the public "Young Previvors" page.  Give Us Back Our Support
We are hoping and praying to get facebook's attention and bring our private page back.  You can also e-mail disabled@facebook.com and personally request for our page to be brought back.

Thank you everyone for your support!

I was about ten-years-old when my Mom-mom had her mastectomy.  I didn’t understand why she needed to have surgery, but I was familiar with the whole hospital routine since my Pop-pop had his Open Heart Surgery when I was eight.  I visited my Mom-mom at the hospital once she came out of surgery.  She was still groggy, but happy to see me.

My Pop-pop didn’t want to stay at his house by himself that night, so I slept over while Mom-mom was in the hospital.  I had my own bedroom at their house since I stayed there a lot.  Mom-mom and Pop-pop practically raised me once my parents got divorced and my mom was working two (sometimes three) jobs.  I was going to sleep in my own bed that night, but Pop-pop asked me if I would sleep on the pull out futon in his room because he missed my Mom-mom.  Of course I would.

My Pop-pop passed away when I was 17.  He really was more like a father to me since my own dad left when I was nine.  I hope my Pop-pop is proud of the decision I’m making that took the life of his daughter and affected my mom and Mom-mom.  I know he’s my angel and will take care of me, just like I took care of him when my Mom-mom was in the hospital.