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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!

Wednesday, August 13, 2014

The Tales of Reese

I would like to introduce a mouse named Reese brought to life by a wonderful author Sparkly Ray.  I have come to know both Sparkly Ray and Reese through my cancer and would like to share a little more as to what The Tales of Reese is all about! 

The Tales of Reese is a series of children’s books for children with Illness, Delays and Setbacks.  The main character is a mouse named Reese who helps make these children’s wishes come true.  Reese also loves to do CrossFit and has his own box – CrossFit Wish!  Many CrossFit Boxes across the country are holding WOD with REESE Charity workouts for children in need. Their mission is to help children, parents, siblings and classmates to understand these circumstances and find comfort and hope in the pages of our stories.

Please support The Tales of Reese by clicking on the links to learn more about this great little mouse and the inspiration he bring to children and their families.  You can purchase the book and learn more about the wonderful children's charities the Author Sparkly Ray and Reese support!

Below are illustrations from the book The Tales of Reese Penelope's Wish:

Penelope is a sweet little 5 year old girl who is coping with Leukemia. She has just gone through her second round of chemotherapy which was sadly unsuccessful. She spends her days looking out the window from her hospital bed and daydreaming about being a ballerina. Although she has never seen it, her wish is to be one of the fairies in the sleeping beauty ballet!

Monday, August 11, 2014

6 months - Batter up we are going to hit the next milestones out of the park!

Today was my two week post surgical appointment with the plastic surgeon.  We FINALLY took out the last drain and even with taking something in advance for the pain and muscle spasms I seem to be having it still was VERY uncomfortable.  It had grown very attached literally!  Additionally, she removed the steristrips not painful at all.  Then she announced she was filling the right side as it was healed enough and in good condition.  I don't think I was prepared for that today but we jumped in right away.  The needle prick was small but the pressure afterwards was uncomfortable.  Picture a lego piece inside of you that can be expanded.  It jabs your rib cage and underarm area and has a complete mind of its own.  While me relationship with expanders has only just begun I can tell you they are not fun.

As for the left side which had both the mastectomy and reconstruction on July 28 the healing is slow.  We have to watch for the skin dieing which can happen and then the expander would need to be removed.   Yikes really hoping this does not happen.  I DO NOT want another surgery.  The plastic surgeon took a HUGE needle and syringe to suction out the excess blood and fluid that for whatever reason did not come out with the drain.  This is a covered picture of what the bruise looks like.  Sticking a needle into this several times was not the most comfortable thing I have ever experienced.

Tomorrow I have my pain management follow up since surgery.  I am doing very well with the exception of today for drain removal (don't worry I did not drive) I have not taken any percocet within the last week. I have been taking regular advil and tylenol as needed. 

Monday, August 18th Next Milestone:
I have appointment next Monday for another fill and to look at the bruising on the left side.  I also have an oncologist appointment next Monday the 18th as I will be starting Tamoxifen.

What is Tamoxifen?
  • A pill used for Estrogen positive breast cancer I will be taking for 5 years.
Does it have side effects?
  • You betcha!  Too many to list and I am trying not to get upset about all of the and wait and see what actually happens.
How does it work?
  • See image chart below
 But you already had surgery and chemo why do you need this too?
  • Because of my age, grade 3 (aggressiveness), receptors both estrogen and progesterone positive and the size of the tumor removed tamoxifen is highly recommended and encouraged.  
Here is a good link that breaks down the types of treatments based on stage.  It does not cover EVERYTHING but is a good basis to start with.  We are taking some of the treatment options from stage 1 and combining with stage 2 as I was diagnosed with stage 2 no lymph node involvement

To end everything on a positive note look who turned 6 months old today!  Harkin is a happy baby despite getting over being sick, teething and that pesky reflux.  We are so blessed to have her as a part of our family!

Saturday, August 9, 2014

It's Official I am CANCER FREE!!!!!

I know I had promised to write more posts this week in my earlier post but this week was a roller coaster for our family.  I had the toughest 48 hours I have had in a very long time.  I know I am very open book and honest in all of my posts but a portion of the 48 hours I am going to keep private as it is not my story to tell and while it involves a family member and my feelings and emotions I will leave it at that.  There may be a time in the future when it is appropriate to share.

On Wednesday the results came back from the left prophylactic mastectomy that I am officially cancer free!  Ken and I were so excited to hear these words from the breast surgeon.  Even though there was no cancer in the left breast it truly felt in my gut the best decision I made.  I will continue to follow up with my breast surgeon Dr. Warden until October 28, 2014 for the surgery I had on July 28 and continue to see her on a 6 month basis after this. 

I still have the left drain in and this will come out on Monday from the plastic surgeon Dr. Cohen.  I will schedule my first fill.  I bought a few sports bras with soft molding to hopefully help the expanders stay in place (yes they shift) and holy hell it is uncomfortable.  This about a weird object inside that can shift and press on your ribs and into the armpit areas.  Another reason this is not a boob job and considered a reconstruction. 

Wednesday night we came home to the nanny advising Harkin went from drinking 33 ounces in one day to 9!  This is a HUGE problem.  We called the pediatrician and since I still cannot drive because of the drain, Ken took the whole family down to the pediatrician's office to see if Harkin had teething issues, acid reflux problems and an ear infection.  I was not prepared for the news we did receive!  Harkin had a really bad case of HFMD Hand, foot and mouth otherwise known as coxsackievirus with Herpangina, an infection of the throat which causes red-ringed blisters and ulcers on the tonsils and soft palate, the fleshy back portion of the roof of the mouth

The pediatrician inspected Bridget to find that she had gotten over the virus and we never even knew she had it.  She had one blister on the back of her throat that had healed, no fever, and one blister on her stomach which was a reminant.  Bridget most likely got this from daycare and acted as the carrier.  She had it herself we did not know as she showed no symptoms and then gave it to poor baby Harkin who was now have a VERY difficult time eating and sleeping.  I then tell the pediatrician I am a week and a half out from a mastectomy with reconstruction (meaning I have open wounds) and a compromised immune system.  She immediately advised to stay away from the baby completely and to call my doctor.

I broke down hysterically crying in the doctors office my baby was screaming, there was nothing I could do.  Than Bridget started crying and whining I really felt like someone just punched me in the gut.  Poor tired Ken got another dose of being the single parent and I basically stood my the sidelines helpless watching the whole thing. 

We cancelled Harkin's start to Daycare on Monday, extended the Bella's, cleaned the entire house inside and out and until today I avoided Harkin as she finally is out of the incubation period.  We ordered an insane amount of cleaning supplies and organic kids hand sanitizer in HUGE tubs.  If you know me you know I don't like germs, if you know HFMD origins than you will also understand why it disgusts me to no end and then my crazy cleaning OCD kicks in!  With the Bella's coming in I was able to get some more sleep because I have to remeber I am less then two weeks out of surgery still and sanitize and disinfect the entire house top to bottom!
Harkin in the mend
This weeks coming up I have pain management follow up even though I am not taking anything with the acception of an occasional over the counter Tylenol or Advil.  I also have the plastic surgeon as previously stated on Monday and Harkin has her 6 month well check up and shots on Thursday!

So while things are looking up for me and my family right now I have quite a few people in my life that could use prayers right now.  Rather than go into specific stories I am going to share the 5 finger prayer with you and ask that you can incorporate these people into your prayers and well wishes. 

1. Your thumb is nearest you. So begin your prayers by praying for those closest to you. They are the easiest to remember. To pray for our loved ones is, as C. S. Lewis once said, a "sweet duty."
2. The next finger is the pointing finger. Pray for those who teach, instruct and heal. This includes teachers, doctors, and ministers. They need support and wisdom in pointing others in the right direction. Keep them in your prayers.

3. The next finger is the tallest finger. It reminds us of our leaders. Pray for the president, leaders in business and industry, and administrators. These people shape our nation and guide public opinion. They need God's guidance.

4. The fourth finger is our ring finger. Surprising to many is the fact that this is our weakest finger, as any piano teacher will testify. It should remind us to pray for those who are weak, in trouble or in pain. They need your prayers day and night! You cannot pray too much for them.

5. And lastly comes our little finger - the smallest finger of all which is where we should place ourselves in relation to God and others. As the Bible says, "The least shall be the greatest among you." Your pinkie should remind you to pray for yourself. By the time you have prayed for the other four groups, your own needs will be put into proper perspective and you will be able to pray for yourself more effectively.

Lastly a very special thank you to a special surprise visitor who made the ending to my week extra special to take the time out to stop by and see how I was doing to say hello.  You know who you are and I very much appreciate you checking in on me :)