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Saturday, September 27, 2014

A year in review 1 year since my diagnosis

Tomorrow is a year from the day I found the lump in my right breast.  I was 17 weeks pregnant and feeling fine until I felt that lump.  I tried to tell myself it would be okay.  I would simply go and get it checked out and it would be nothing.  Waiting to call my OB seemed like a whole week packed into one night.  I called at 9:02 am on a Monday morning and blurted everything out to the receptionist and she was like I am sure everything is fine but we will have you come in. 

I went in he felt the lump and said it feels too big to be cancer but we should always check out lumps so I will send you for an ultrasound.  I got the prescription written for an ultrasound with the right to biopsy if anything suspicious was found.  The same receptionist was so kind and called the breast center pulled some strings and made me an appointment.  I got scheduled for 2 days later on October 2.  I remember going to that appointment feeling like I was walking in a thick fog.  I think in my heart I already knew I had cancer and my stomach and my brain where not on board with the concept yet.

Since it was October the breast center was decked out in pink and promoting breast cancer awareness.  There were so many women in for their yearly mammograms and check-ups there was no where to sit.  Ken came with me and when I got called back to change into a robe and wait in the next waiting area he stayed in the main waiting area.  There I was with women young, old and somewhere in between sitting in a white robe waiting to be called.  I remember the look on the face of the woman sitting next to me.  We briefly struck up a conversation and she was nervous and I assured her it would be okay.  It is always good to get out yearly exams.  She got called and my phone rang.  I answered it was the daycare Bridget had bitten again.  Bridget was going through a tough phase because she could not express herself she would bite.  I assured them we would address this again with her when we got home and set up another meeting to speak with the daycare director.  I almost forgot why I was where I was and then my name was called.

Again when I stood up it felt like a thick fog entered my head and my feet became so heavy.  My heart was in my throat and it was the longest walk ever.  I went into the room met the radiologist.  She explained everything and asked if I had any questions which I did not because at this point it was pretty straightforward we were going to pour some cold goo on my breast and run an ultrasound wand back and forth.  We started and my eyes were glued to the screen.  Not is a good way like when you go for an ultrasound to see your baby and your are filled with anticipation and excitement.  No this was different.  This was cold and uninviting.  We she finally got a clear shot on the screen I could see this big black mass.  I knew right there this was not good.  She put the wand down and called the nurse assistances back in the room and announced she wanted to exercise the biopsy.  She left and the nurses came in to explain what was going to happen.  I burst into hysterical crying.  The ugly cry!  The kind where the mascara all over your face is the least of your concerns because you also have snot coming out of your nose and you can barely breath.

I finally got myself under control and they performed the biopsy which because I was pregnant they really did not numb me or no anything to make it feel better.  So there I am getting stuck with this giant ass needle 3 times in order to get a good enough sampling.  I left with no answers, scared and with more questions and fear than ever before.  I remember trying to be positive repeating it can't be cancer I am pregnant and only 28 how does this happen.

Two days October 4th later at my post physical follow up from my general practitioner I had the Friday before I found the lump.  I went in for my blood work results.  Everything was great and then I told her about the lump I found and she looked at it and felt it and said wow that is big but most likely not cancer.  She is connected to the hospital system called (epic) and said she would check the results as she was sure they were fine.  I was then left to wait for a really long time because little did I know they were trying to find Ken because I did have cancer.  Instead I continued to answer work emails on my blackberry and surf the internet on my phone.  I was 3 days shy of my 29th birthday and also feeling sentimental missing my Dad and irritated I was waiting so long (thanks pregnancy hormones) when Ken opened the door to the exam room.  It was like someone punched me in the gut.  I could not breath.  I could not get words out.  I felt immediately sick to my stomach and started that ugly crying again.  I had cancer!  How could this be.  The rest of that afternoon was a haze.  I cried so hard I ran out of tears.  I almost puked in the office but held it together.  I remember calling my boss to say I have cancer I am not coming back to work today. 

It took me all of 24 hours to get myself back together.  We headed off to my cousin Amanda's wedding.  I decided I was having my baby girl who I had already named Harkin and whom I could feel kicking right along in my tummy.  I knew it was not going to be an easy battle but I do not give up.  You can either fold or play the hand and in life I choose to play the hand even if it sucks!  What happened in the end is nothing short of a miracle and positive attitude.  I will not give up.

Before I touch on the topic of pinkwashing, I cannot implore enough that self examples, testing, yearly mammograms, genetic testing if it is in your family history are all important steps to saving your life.  This includes when you are pregnant!  CANCER DOES NOT DISCRIMINATE!!!!!!  Please get checked and take care of yourself!

I had always supported breast cancer in the past.  I donated to those walking, donated to Avon and bought pink products thinking I was making a difference and in reality it is very sad the amount that actually gets donated if anything at all from pink item sales.  The advertising during this month is referred to as "Pinkwashing" in the breast cancer communities.  We are the people who unfortunately get to know breast cancer on an intimate level and know it is more then just one month out of the year.  In my case I have even less of a right to complain as my cancer was contained and I am considered No evidence of disease where as others like with (mets) other wise known as metastasised breast cancer.

Monday, September 15, 2014

Back in the saddle...

So I am back to work 9 days now and in some aspects it is like I never left and stepped into a time machine and went back 11 months and then there are moments I feel completely out of place like the world completely passed me by and I am grasping for straws.  It is a really weird place to be.  I am still tired and trying to get my energy back, I have difficultly concentrating and grasping everything coming at me.  I am happy to have a job, luck to work where I do and I am glad there is such a welcoming environment but things are just different.  I am different and nothing is going to change this.  I got back on the saddle and while it feels comfortable and familiar I am noticing new things I never saw before and my horse changed speeds without my consent.

Everyone else is doing really well Bridget is in the middle of potty training and it is going well except the whole #2 thing.  She holds it in an constipates herself so I told her it is okay to put a diaper on when she wants to go and she doesn't even want to do that.  We just bought a minnie mouse potty seat, minnie mouse underwear and a whole slew of potty training books.  We even started watching potty videos on youtube.  What is my life coming to?  lol its all about the potty!

Harkin is happy as a clam!  She is over 19 pounds and growing strong.  She crawled this weekend and her first two bottom teeth broke through.  She is doing great at daycare and loves her sister.  Harkin is just a happy baby.  No matter what she is happy and I need this! 

This week I see the breast surgeon for an 8 week post mastectomy op appointment.  I also continue with my weekly plastic surgeon appointments to get my fill.  I have these scheduled through October and from there we will see where we are and when my next surgery is.

I have to say I am soooo tired of seeing doctors that I am dragging my feet and have yet to scheduled my nephrologist appointment to check on the good old kidneys.  I know I need to do this and check on my FSGS and well I just have not had the time or energy to make the call.  His schedule is a very specific one and you basically come when they tell you.  This is like most of my doctors because of their expertise you bend your schedule to fit their schedule.

I have had a few people ask me how I am doing and when I start going into details I can tell by their face they did not really mean how are you doing and just expected me to reply with a nice easy answer of good, fine, etc.  Just for the record don't ask someone how they are doing/feeling especially if they have been through something big and expect the answer fine, good or something short and sweet.  I understand we are all busy but it is important to me to answer the question.

I received two meaningful gifts recently the first was these beautiful bows made by an elementary school friend.  Bridget, Harkin and myself each have one to where to the Avon breast cancer walk now and another friend and co-worker bought me a beautiful plaque to remind me what Cancer cannot do.  Sometimes you just need the reminder so thank you!

Saturday, September 6, 2014

First day of school and First day of work

Tuesday September 2 was the girls first day of the 2014 preschool year.  Harkin had just started Ms. Martha's class two weeks earlier.  Bridget was so excited to go back to school that she woke up at 3:05 am on Tuesday morning exclaiming "Mommy come dress me I need to go to Ms. Ryan's class!"  Needless to say she woke up her sister and the dogs.  pretty much it was me vs four.  I landed up sleeping on the floor in the girls room to get them to go back to sleep.  Which thankfully they eventually did but then everyone was not quite ready to wake up when the alarm went off.

The girls did great on their first day.  Harkin celebrated a birthday in the infant class and Bridget got right back into the swing of wanting to use the potty.  I used the day to run errands and tie up loose ends.

On Wednesday I had my first day back to work.  I had the knots in my stomach.  It felt like a combination of homecoming and being a freshman all over again.  Homecoming because I know everyone for the most part and freshman because the culture and focus and company have changed so much.  I was very happy to see everyone and start to catch up. At then end of the first day I was dead exhausted and went to bed pretty early for my standards.

I have also established a plastic surgeon standing appointment every week that started this week and will run through then end of October.  I am hoping I will have good progress and be able to continue to move through my goal and get my next surgery without any issues.

I also started the back with the personal trainer again this week.  I am soooo happy because I lost so much muscle tone and got pretty weak with all the surgeries, cancer, chemo and not to forget the FSGS.  I also have the Avon walk coming up in about a month and I am NOT really physically prepared for this. 

Ken and I went to the Avon Pavillion in Avon by the Sea for our anniversary dinner last night.  It is a tradition of sort for us.  They rebuilt the place beautifully since hurricane Sandy.  I felt bad because I was so tired I made it through dinner and then fell asleep on him on the way home.

This weekend we have a lot planned with the girls and I am trying to get back into the swing of all things mom and household related that still need to get done despite working.  One step at a time and easy does it.  I just need to keep reminding myself Rome was not built in a day ;)

I love this picture and all it represents.  Which one are you the monkey or the elephant?

Thursday, August 28, 2014

Ursula's tentacles are a lot like cancer

Back to work:
I am medically cleared to go back to work by my oncologist with the limitation of allowing my mind and body to readjust to re-entry into the work place.  Meaning to make a schedule that will allow me to rest and stay healthy.  My body is still recovering big time from everything it has been through the past 11 months.  Even though I am medically cleared by my oncologist Dr. Graham I need the long term disability doctor to speak directly with her in order for my start date of September 3rd to be approved.  If they cannot connect I will have to wait until they do in order to head back into the office.  I am excited and nervous.  I still get really tired and while I look healthy I am still going through the effects physically and mentally of recovering from having cancer.  Cancer has these ever reaching tentacles, just when you through it was over something else pops up.  Reminds me of Ursula from the little mermaid.

The staycation:
9 days off with the kiddos since daycare is closed is really wearing me out!  They have boundless energy!  So far we have been to the beach, the Turtle back Zoo, went out to lunch and shopping, World of Wings and we still have Liberty Science Center tomorrow, a BBQ and the Scandinavian Festival.  Wow did I mention I am exhausted and wiped out!  I am not sure how you stay at home mom's do it!  I am reminded how much I love my children and how much I am not cut out for staying home day in and day out.

Plastic surgeon update:
My reaction to the needle size face LOL
Today I got to see Dr. Cohen my plastic surgeon.  She had been out of the office as she had an issue with her back and she herself required surgery.  She had surgery 3 days ago and was back in the office!  She is one tough lady.  Good news is my hematoma has healed nicely along with the blood supply returning to the skin on the left side.  It had been a concern when it blistered over that the skin may die and need to be cut off and the expander removed.  Thankfully this has not happened.  She was concerned with my port scar which has gotten really tough, pink and painful.  She said the port scar has become a hypertrophic scar and I need to start using mederma and vitamin e oil daily and applying pressure and massaging into the scar to break up the collagen and fibroid bonds that are forming.  This is not anything that is going to effect my health per-say it is a cosmetic concern she advised.  She expanded both sides today with the saline fill.  I am now scheduled for a saline fill once a week for the next two months (so through the end of October).  We will see where we are and re-evaluate from there. 

Hair and appearance:
Still struggling with the hair.  I know it is just hair or so I have been told but it was a part of my identity previously and I spent a long time growing it to that length it was last year.  I am also struggling with this new body.  It is not the body I am use to.  I am not post two kiddos and multiple surgeries and no REAL exercise regimen in 11 months and well the results are a lumpy, bumpy, scar filled body.  Yes I am still here and yes the scars are a sign of everything I have been through but I still miss the old me.  I will never get that me back and I realize this but some days I have a pity party of one because I need to.  Then I rally and gather myself and march right back into the real world because life is meant for living not for sitting.  I will need to keep working at this every day! 

An art tree of life sculpture and quotes at the plastic surgeons office
Keep a green tree in your heart the singing bird will surely come. ~Chinese proverb

Friday, August 22, 2014

Updates and permission to leave the holding pattern

Harkin has been in daycare for a week now and all is going well.  She is her usual non napping but smiley self :)  I have to admit it is tough for me because I got so use to staying home with her.  But it is time for me to start moving into the next phase of my life.

Next week the school is closed and both Bridget and Harkin will be home for 10 days :) This will surely be very interesting especially since I am adjusting to tamoxifen.  Ken has off and we will be doing stay-cation activities like the park, zoo and maybe even the beach!  I have not been there or really out at all this summer!

My plastic surgeon had an emergency come up with her own health so I have been seeing the covering surgeon Dr. Winters.  Next week should be my first full fill of the expanders on both side.  The hematoma on the left side is healing really well and I have been taking vitamin E as well as using vitamin E oil to heal the surgical sites.  I am big believer in vitamins and supplements in addition to a healthy diet, exercise and taking the prescribed medication determined by the doctor.  I have been eating cleaner and healthier.  I also have started to review exercise options because I need to get back into reducing the stress and boosting confidence and positive attitude.

I have been asked a few times recently by other mom’s who are going through cancer how did you tell your toddler.  I was honest with her from day one.  She saw everything from the bald head right now to the drains and mastectomy scar.  We called them mommy's boo boos.  She would ask about them all the time and I would always show her when she asked.  I also read to my daughter a lot about what cancer was.  Here are some fantastic books for kids of all ages if their mom has cancer and it does not need to be just breast cancer.  remember the type of chemo a treatment will determine if you loose your hair. Not all chemo causes hair loss.

Here are a few good books to buy (Amazon does a bundle pack where you can buy 3 for a set discounted price):

Nowhere Hair: Explains your cancer and chemo to your kids

You Are the Best Medicine

Mom Has Cancer! (Let's Talk About It)

Mom and the Polka-Dot Boo-Boo

When I saw the oncologist Dr. Graham on August 18 we agreed to a visit every 3 months.  We also filled the prescription and started tamoxifen.  In December a European study will be coming out on the affectiveness of using a drug called Lupron (an injection) to quite the ovaries in addition to the tamoxifen.  Dr. Graham and I will be revisiting this in the New Year of 2015.  If you want to learn more about the drug you can click here   Dr. Graham also cleared me to go back to work and advised I will need to ease my way in.  I do not have a set start day as the doctors from the cancer center need to speak with the insurance doctors and make the determination.  This brings on a whole new world of emotions.  The world has moved on quite a bit in the last 11 months.  Crazy! Right? By the time I go back it will be somewhere around 11 months I have been out.  So while everything has progressed forward I have been in a holding pattern and while I learned a lot about myself and way more then I ever intended on knowing about the medical field and the scary world of cancer, I feel I am lacking in socialization skills, what a daily schedule looks like, wearing something besides a sports bra and yoga pants and what it is like to be responsible for something other than my own health and my children.  

How am I going to navigate this while adjusting to tamoxifen and also continuing my reconstruction with the plastic surgeon?  I don't have the answer yet.  I will need to go slow and take my time.  I will need to work with others to learn what I have missed in the past year.  Slow and steady, one day at a time and easy does, Rome was not built in a day, It takes time to get back into the swing of it, are all phrases I NEED to get really familiar with.  As uncomfortable as it may be CANCER changed me and my life and there is NO going back to the way things USE to be!  Other people continued living and I am just about to break out of the holding pattern and I feel like I forgot how to land I have been up here so long....

Just wanted to share something cool.  I posted a pic in response to Today show host Savannah having posted a make-up free picture of her and her new baby daughter Vale.  Not only did the feature my picture as #Day50 in #100HappyDays they featured my story after reaching out for more details on Todays Parents website.  I am glad to get the story out there to raise awareness on both Breast cancer and cancer in general while pregnant as well as FSGS my kidney disease.  Here is the link:

Tuesday, August 19, 2014

The 5 year plan

Have you ever been on an interview and been asked what is your five year plan?  Or tell me what your life looks like 5 years from now?  I know I have and I always answered the question with my career plans first because I always found that easier.  I never really acknowledged the FSGS (kidney disease) because well it was painful to think about a wear would my kidney function be by then? Bridget came along and the 5 year plan included more family interwoven with the career answer still no acknowledgement of the FSGS.  Now EVERYTHING is different and part of the 5 year plan is already decided for me.  Cancer does that it changes the plan and while you might want to head right back for the course it knocked you off that is not possible for a variety of reasons.

My five year plan now includes a drug called Tamoxifen.  I started it yesterday.  My 5 year plan also includes no more children.  You may say but you will change your mind but the answer is no I had a tubal ligation done so I can't have more children.  I made this decision that it was not worth being Estrogen and Progesterone hormone receptor positive to take the risk.  Plus my kidneys have been through the war and in 5 years I will be 34 turning 35 and I never win the good luck lottery so I did not want to tempt to create a bad situation.

I have been knocked off my track big time and it is weird having certain this decided for you.  Now I need to determine where am I going?  I have always been the planning A type personality.  Hell I had a back up plan for the back up plan and I lived with one foot in the present and another halfway in the future trying to figure out what was coming next so I could plan for it!  I was OCD about planning! 

Disease and illness not just cancer or FSGS will knock you off the course, track or road you are on and you are presented with something new essentially a blank slate.  The choice becomes yours do you want to try and navigate back to the path you were on or forge a whole new one?  Do you want to plan every last detail or throw chance and caution to the wind and take it as it comes? 

I truly believe the answer is different for everyone.  I can say this I live each day to the fullest.  I enjoy more little moments then I ever have before.  I am more sensitive to others troubles, worries and situations because we don't live in a rat race.  We live in a world with other human beings that are trying to live each day in and out just like us.  Some of us have had our perspective changed and once you do you can generally spot those who are going through something very easily.

As for the rest of my 5 years plan I can say I know this I plan to live each day to the fullest.  I am grateful to have my two healthy daughters, my husband, my dogs and my house.  I am grateful to have such amazing friends, family, co-workers and beautiful fighters along the way.  I will continue to make new friends while keeping room for my seasoned friends.  I will continue to be more open and try not to worry so much about the future.  I will stop creating plans for backup plans because it is a lot of time spent worrying.  I will be as healthy as I can possibly be.  I will continue my charity work and try to educate others about both FSGS and Breast Cancer.  I will seek out the good in the world because there is too much negative out there right now.  I will make impulse decisions because life is about living and loving...

My newest Tattoo got it yesterday 8/18 bc life is about living and loving

Friday, August 15, 2014

Searching for a silver lining!

Okay so trying to stay positive as I have been to the plastic surgeon twice this week and I have more fluid that has built up above the expander on the left side.  The picture on the right shows the bruising and in the middle is the bump of fluid.  Above that is the port scar.  I see the surgeon again on Monday after I see the Oncologist.  Monday I will get labs and I am set to start tamoxifen.  If you look at my bruising it kidda looks like a cloud with a silver lining!

Today Harkin started daycare and well I am a bit of a mess.  I knew this day would come but I really hate being away from her.  I am also mad that I am not healing as well as I expected from the surgery.  I now cannot bare any weight on that side which means no holding Harkin :(  I am having a hard time sitting still and trying to rest because I hate sitting and being still!

Our coffee maker broke.  I know people have worse problems ever day but it just adds insult to injury in this case. Ken got a new one already.  Yes even less of a reason to complain but I did not want to spend money on a new one.  And when big things in your life are not going as planned it is sometimes hard to get over the smaller things.  At least I think it is. 

On a positive note I am scheduled to get my first haircut since I shaved off all my hair bc of chemo!  I need to embrace this short hair and get some type of style back as it grows because I am starting to look like an 80s mullet lol.  I will post some pictures later! 

Wishing everyone a beautiful and healthy Friday.  Try and do something nice for someone today!  in light of Robin William's passing this week each individual is fighting a battle you may not know exists and a few nice words or a small gesture can go a really long way!