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Thursday, April 16, 2015

Nastalgia its a funny thing

Nostalgia is a funny thing.  It brings a rush of emotions that are both positive and sad.  It charges us with memories and reflections of the past and shines through in glimmers of today.  I am my father's daughter... I have been since I was born.  Not only do we look alike but we had a lot of the same passions cars, life, and people..... 

I remember when he use to tell me he wanted to be the General Manager of people feeling good.  He taught my siblings and I no matter where someone came from, their race, religion, etc they were all people and were meant to be treated the same, with care and respect.  He taught us to get our hands dirty and to leave things better then the way you found them.  He would always say to extend charity and kindness no only because it is the right thing to do but the feeling it would leave you with would be invaluable.  Something that could not be bought in a store.  He was right!

I love people.  I always have.  They fascinate me and provide me with a wealth of knowledge, relationships and experiences I may have never know.  I could talk the paint of the wall.  I strike up conversations with complete strangers not because I have to but because I want to.

Why am I typing all of this when my blog has been focused on my journey about cancer while pregnant as well as having a kidney disease called FSGS you be asking yourself.  Simple.  I love people and have had the opportunity to meet some wonderful people because of cancer and FSGS.  They are blessings in disguise.  I feel I need to keep sharing my life and my journey because I want to help PEOPLE!  Because people all matter!

Love you Dad!  Thanks for all the life lessons.  I feel like you are still with me at times.  


Sunday, April 12, 2015

Two weeks post Op, 4 Lupron shots in....where is the time going?!?!?

Okay so so Tuesday will be 2 weeks out from my surgery in which I had the expanders swapped for the silicone implants.  Dr. Cohen my plastic surgeon said I was healing great on my post op appointment on Thursday.  So that is going well.  I still have to wear this support strap for 3 more weeks and I can't lift Harkin or Bridget for 3 more weeks either which is very hard.  It is important to heal right.  As for exercising nothing which require laying on my stomach or heavy lifting or exertion.  Which in not helping some of the other issues I have been having lately.

Friday it was off to the cancer center for my fourth shot of Lupron.  Based on my hormone levels I am in medical menopause.  Which means the two drugs I am taking Lupron and injection every 30 days and 25 mg of exemestane daily are working to stop the production of estrogen in my body.  Without estrogen let me tell you how you feel: crampy, fat, bloated, moody, emotional, cranky, tired, fatigue, hot flashes,headaches, muscle aches and well to round it off just plan crappy!  I feel like I am living in someone else’s body!  It is not natural to have such issues as a 30 year old woman.  I get the end result of doing this but wow thinking about this drug course for 5 years to ensure this cancer does not come back well hell that is a lot. 

The hot flashes are getting easier to deal with meaning they still happen but I know what to do to try and avoid them and when they do come I try and gulp water and find a fan stat!  Meet sunny my new little yellow desk fan.  I can take her with me and she is both wall outlet equipped and USB equipped giving me many option!  I swear if I was not so grumpy when I was hungry I might contiplate a cleanse or cutting out carbs or something major but no I like my carbs and food too much and well I already have enough road rage so we do not want to add to this!

I did finally get my back order fit bit in plum and have been using to try and get an idea on calories burned and steps taken a day.  Some days like today I make of 10,000 steps and well other days we just will not discuss.  I need to get back into exercising, seeing the trainer, not be so damn exhausted and well having time in my life to do things.  But between work and the kids and everything else there is just no time to do much of anything.  Thankfully Ken is super patient with me even when I am crank0!


Next week will be super busy as Ken and I will be in Atlanta for the relocation in the beginning of the week, my only day in the office is on Wednesday and then Thursday through Sunday I am off to Denver for CancerCon and the chance to meet a fellow Kick ass cancer mama!!! I am sooooo excited!!!!


I now have two toddlers in the house running around and well it has moments when it is wonderful and moments when I want to pull out all of my hair (don't worry I worked too hard to grow it so no pulling it out).  I feel like the medication which zaps my already low energy because I still have the FSGS which lets my body leak out important protein and well yeah that is fun.     Here is Bridget on the left being miss toddler fashionista Maggie is healing well from her lung surgery.  There really are not next steps other then monitoring her and bringing her back in to see if cancer pops up again.  They have not chemo for dogs at this time that is effective in the type of lung cancer she has.  We have been thinking about getting another dog.  I know some of you might think we are nuts but I have logic.  Maggie is 9 and Ralph is 10 and they are attached at the hip, if something happens to one the other will surely not do so well.  My hopes is to get a young 1 to 3 years old male small terrier mix that can bring some spunkiness to Maggie and another companion for Ralph.  So we are on the look out :) 

I am hoping that things will settle down in the next several weeks but I know this is not the case.  I also hope that cancer would just well go away!





Tuesday, March 31, 2015

The metamorphosis - my final surgery

Today was my final surgery in which we switched the expanders filled with saline for the actual silicone implant.  I am excited because this is the final surgery, an end to pain and changes to my body.  There was NO drains this time!  Glorious!  I even got a new pair of shoes to mark the surgical occasion.  Because every shoe nut needs a new pair for this!  Michelle came up and took me in to my surgery so Ken could take the girls to school and meet me there. So why did I buy butterfly shoes?  Because I have been through a metamorphosis, whether I choose it or not.

But I have completed a metamorphosis through cancer:
  • After diagnosis October 4th, 2014 3 days shy of my 29th birthday and 17 weeks pregnant I made the decision to have my baby and beat cancer
  • So it was onto a a right mastectomy, sentinel node biopsy and port placement while pregnant On October 21st
  • Then onto 4 rounds of AC chemo while pregnant
  • 2 hospitalizations for infections before Harkin was born
  • A c-section and delivery of happy healthy Harkin Thea on February 11, 2015 only to have internal bleeding and be rushed back into emergency surgery the same day for repair of my bleeding rectal muscle.
    • I came out and needed 6 units of blood, drains and a bad cellulitis infection with no white blood cell count to speak of.
  • Then I received the granix shot which was to boost my white blood cells and found out I was allergic to this with hives and extreme bone pain
  • While in the hospital I developed the beginning of my physical dependency to dilaudid and fentanyl as I used it to control the pain of taxol and granix shots.
  • Took a break to come home with Harkin and then spent the next 15 weeks having 12 rounds of taxol completing June 4, 2015
  • which triggered my physical withdraw from pain medication
  • I then had my port removed at the end of June, 2015
  • Next step was my prophylactic left mastectomy with double expander replacement
    • As a result I got a pretty bad hematoma that thankfully did not cause an infection or for the skin to die.
  •  This delayed the start of the expansion but I did head back to work in September 2015 after being out for 11 months on disability.
  • I also started tamoxifen for my hormone therapy and my expansion fills which went over several months.
  • After some new results emerged from studies on young women with Estrogen and progesterone positive breast cancer reacting well to a new drug combo we switched my treatment to Lupron injections monthly and Exemestane.  I started January 13 and have had three injections so far out a 5 year plan.  I also take the Exemestane daily.
  • Fast forward to today and I finally had my expanders swapped out for implants.
To say I am not in pain or uncomfortable would be a lie.  I am sad because I cannot lift my daughters for over a month and I am hoping this will not impact them.   But I do feel like I am claiming a part of me back.  I am taking control the cancer is not!  I got this!

As for my Westie Maggie she had her 4 cm lung cancer removed.  It had not spread into the lymph nodes no chemo as the testing indicated there is a not a therapy available for her to take.  So we hope she outlives the statistic of 1 year.  She was only 9 when diagnosed turning 10 this September and she is a spunky and happy dog who loves the kids. 

We are in the process of moving to Georgia for a job relocation which is stressful as I need to figure out all the normal move stuff plus the added extra of finding all the doctors I need and which ones I will keep.  We did find a house in Alpharetta, Georgia and will be relocating sometime in July.  Now we need to just sell out house here in Hawthorne.  Sad because we have such great memories here but time to move to the next chapter of the Nutter's crazy beautiful complicated life.

Bridget and Harkin keep getting bigger, stronger and smarter each passing day.  As for the world's most amazing husband well I could not be more happier to have this man to wake up to ever morning!  He is my rock and they broke the mold when the made this one.  

I need to try and update more and I promise I will look to do this.  I continue all the prayers, support and well wishes.  I am also counting down the days to meeting a special cancer mama like me at CancerCon in Denver in April!





Sunday, March 8, 2015

Hot flashes and my westie has cancer....

When I read the side effects of Lupron (injected once a month) and aromatase 25 mg (taken orally daily) I knew it said hot flashes.  I figured okay a hot flushing/annoying feeling but something one can cope with right?  OMG!!! They are terrible!  The come on multiple times a day, wake me up at night.  I feel like I am being burnt alive from the inside out.  It is hard to keep my patience and self in check from letting out an extreme mega bitch when they are occurring.  Not to mention I am extremely pale so I start turning purple and bright red in patches and then people ask "Are you okay?  you look like you are having an allergic reaction."  So then it become this whole big thing.  Do I tell them the whole long story and where I am with treatment now?  Do they even care?  Will they understand?  The answer is no, no and a side of more no.

I have tried people generally get all wide eyed and don't know what to do.  So the answer is not worth launching into a whole long diatribe when I should save my precious energy that is suffering from taking this medication.  Couple this with a sluggish digestive system.  So I started trying to eat a ton more fruit and drink a lot of lemon water.  Well I have to pee a whole heck of a lot more but it is not solving that many other issues.  I guess I am well hydrated so that is a plus.

I know I should be happy my hair is growing in but it is annoying.  I can't put it up, it has a weird texture curly but limp.  It is thinner then it was before and darker much darker!  blah I really hate it.  I think the buzzed head was almost nicer.  So I think I am going to do something super radical with it because I need to try and get excited by it and right now not loving it!  

Switching gears from the side effect complaining train to a more serious not my beloved westie Maggie was diagnosed with lung cancer.  On March 10th she will have surgery to remove it and have it sent out for additional testing.  this will determine next steps beyond the surgery.  I am having a really hard time dealing with our dog having cancer.  I have had ENOUGH with cancer.  Go the f away!  Leave our family alone we are done with you!  Please send thoughts and prayers for Maggie!

Sunday, February 8, 2015

Winds of change and a devil named lupron

It's hard to feel comfortable when you feel like you are in an alien body and are putting alien toxins into it.  Just when you think you have steeled in to the "new norm" whatever that means.. the rug gets yanked right from beneath you!  You can try and anticipate the next yank but you will never stay on top of it.

Case in point I started my Lupron injections on January 13th.  I will go once a month for this injection.  Two weeks later I went from taking 10 mg of tamoxifen to 25 mg of aromatase.  My body is sick!  It is retaining water.  I have had a period for two weeks straight now.  Pardon my language here but my hormones are all fucked up!  I am angry then I am emotional then I cry then I am mad and so on!  It is this crazy vicious cycle.  I want to throw things at the wall in a rage and then cry because I thought of throwing things at the walls.  my patience for stupidity is NON existent!  It takes soooo much energy to survive each day.

I am watching what I eat, I cut out all extra sugar so I am drinking straight coffee and espresso no sugar.  I am cutting carbs and working out like crazy but I just keep retaining water and weight.  I have heartburn and I have hot flashes.  I can't sleep straight through the night on a week day but if given the opportunity like last night on the weekend I can sleep 16 hours straight through! 

I am basically one hormonal moody bitch.  I am really really hoping this levels out and I can get onto the next phase of "normal" because the next thing up is my surgery March 31st.  Which means back under anaesthesia and back on pain medication which I know I have to watch for a variety of reasons. 

I feel like someone no one wants to be around including myself.  I try not to lash out at my kids, husband and people I work with.  It is a very very tough exercise everyday to keep myself in check.  It is also an extremely stressful environment that I am in currently.  But this too will pass.  I am allowed to crumble every once in a while.  No on can go on forever without releasing when it becomes too much....

I am going to look at this and try to frame it as a strong wind of change.  It is going to bring change but maybe it will strip away the things that I no longer need.  Maybe these are elements of a safety blanket I have given to myself that I no longer need moving forward.  I will still resolve to try and take things one day at a time for now and see how the winds of change decide to blow.... 


Tuesday, February 3, 2015

World Cancer Day 2015 and other updates

February 4th is World Cancer Day for 2015.  

Cancer effects everyone in one way or another.  Whether we are unfortunate enough to be diagnosed with it ourselves or to have a loved one who is diagnosed or we know someone through our six degrees of separate who is a survivor, going through treatments or just starting their battle.  Cancer is a bitch!  No matter what way you put it.  The tentacles of cancer are far reaching and right when you think you have it all figured out it comes back with a surprise or yet another round.  Cancer does not discriminate against: age, sex, nationality, skin color, religious preference, and so on.  It strikes regardless of whether you ever spent a day worrying about it or if you spent everyday worrying about it.  Its is not fair!  It is lying in the wings and stripes the people it attacks from many different things.  You are never the same after cancer no matter what your diagnosis, outcome, treatment plan and so on.  No one comes out unchanged even in some small way. 

Tomorrow is World Cancer Day for 2015 and I challenge to to get informed and make a difference.  Do something you feel will contribute and if your not sure what to do or how you can help just ask!  There are many of myself included that would be happy to tell you what is helpful.  http://www.worldcancerday.org/

Cancer has personally effected me and I have also made some amazing friends as well as lost some amazing people along the way.  But I will not lay down and I have decided I will keep advocating for cancer and especially those who are pregnant with cancer.  Please check out Hope for Two which is especially designed for mom's that are pregnant and diagnosed with cancer http://www.pregnantwithcancer.org/ This organization was the launch pad to help me get myself together when I was diagnosed while Pregnant with Harkin.  Who turns 1 next week!!! Wow!!! Where did the time go.

CancerCon
I am excited to announce I am going to CancerCon in Denver Colorado this April 23rd to the 26th.  I am going because and Awesome Kick Ass Cancer mom invited me and I will finally get to meet her in person :)  Cancer really has allowed me to forge some very deep friendships with people in a short amount of time.  I encourage you to check out stupidcancer.org who sponsors CancerCon 

 Interesting article on Methylome's
You are probably thing what the heck is a Methylome?  and what does it have to do with cancer?  Well for the triple negative breast cancer community it could mean a lot.  Rather then miss speak on this here is a very interesting article in regards to the recent discovery and promising development in this area of genetics. 
http://www.stuff.co.nz/science/65707744/forget-the-genome-australian-scientists-crack-the-methylome

Lupron update:
Hormones are a disaster and hot flashes are truly undesirable but the alternative is not an option so we power through.  Next injection is February 13th.  Ahhh Friday the 13th.....

Remember you can make a difference in someone's life who is fighting cancer or has fought cancer.  If you are a survivor keep on rocking on with your bad self and if you are still fighting NEVER loose hope!!!!


Friday, January 30, 2015

Birthdays, moving, new treatment plan and updates in general

First off I totally suck at updating my blog these days.  Its not that a lot is not going on in my life it's just that TOO much is going on in my life and it makes it hard to find time to take a moment to get some time to reflect and get my feelings about it all out.

Bridget turned 3 and Harkin is almost 1 - where did my baby's go????

Today is my oldest daughter's birthday as she turned 3.  Last year when it was Bridget's birthday I was pregnant with Harkin battling breast cancer, in the midst of AC chemo  12 days away from Harkin's birth and I was hospitalized for an infection.  I felt awful I could not go to school for Bridget's birthday or be there for all the things a mom is suppose to do with her daughter/toddler for a second birthday.  I tell myself it is okay because I was busy being a warrior fighting cancer to make sure I was there for her and her unborn sister.  I fought like hell but also worried like hell every day.  To be fair my journey as a pregnant warrior began with Bridget.  I had FSGS and still do which can cause all kids of complications for pregnancy. 

With my first pregnancy with Bridget I am not going to lie I was miserable, swollen, over weight, body cover in acne and I landed up having an emergency c-section after an unproductive labor and pre-eclampsia.  I landed up need magnesium for 36 hours after her c-section.  I was throwing up like crazy and in the special anti-pardum floor.  Little did I know I would be back in this unit 2 years later several time pregnant with Harkin with breast cancer and FSGS.  

My body has been through a war literally and figuratively.  It has the battle scars to prove it.  Right before Harkin's c-section I made the decision to have a tubel ligation which means I performed a procedure with the intent to not have any more children.  It is reversible but in honesty despite wanting to have the choice to have another child I can't.  It would not be the responsible thing to do for myself, Ken, my girls and my family.  I have estrogen fed cancer which surges during pregnancy and the FSGS still exists and can cause the pre-eclampsia again.  So as we approach Harkin's first Birthday and the end of babyhood I am a bit saddened. I am also amazingly blessed to have both my daughters and for them to have their mom.

On to some other updates - I know the transition kidda sucks here but throw me a bone at least there is an update to share....

Before now I have not really publically discussed work but the company my husband and I both work for made the decision to relocate from Northern New Jersey to Atlanta, Georgia.  Ken and I are blessed to have been made offers to continue employment with the company and we will be moving to Georgia at the end of June/beginning of July of this year.  We are nervous and excited to see what this new chapter as a family will bring.

I will be keeping a series of my doctors even with the move.  I trust my team of doctors too much to give up our relationship and treatment.  They really know me and have seen me through the worst days of my life so far.  These are the people who saved my life and continue to create treatment plans for me to ensure I am healthy and here!  That is huge in my book.  That is worth getting on a plane for in my opinion.  They know me that is super important.

The strange thing about this move is I feel like my Dad is right beside me again.  Its like I can hear him guiding me in terms of making decisions.  I have not heard his voice in over 6 years and I miss him everyday.  There are still those moments I go to pick up the phone to call him and have him answer "Hey Keeks!"  Side note my family called me Kiki or Keeks as my sister and brother could never pronounce Kristin right.  We moved a lot as kids and we stuck together through the rough times and my parents divorce.  My Mom and Dad both moved on and eventually were able to be friends again which was nice.

Medical and surgery updates:

On Monday 2/2 I have my last plastic surgeon appointment before I wait several weeks to have my exchange surgery on March 31st.  On March 31st I will swap out my expanders that have been filled slowly since September for implants.  Its another step for me in terms of getting back to normal.  I know my body will never be the same because of all that it has been through. 

Two weeks ago I started the lupron injections and while I did not turn into a frog or anything strange I am not sure if I suffered any side effects or it was the symptoms of a sinus infection I just got.  I also started today my 25 mg of aromatase that will replace tamoxifen.  I am really hoping this is worth it and cancer does not come back and I safely make it out of the 5 year window without a recurrence and even more importantly past that.

My next lupron injection is Friday the 13th.... Ahhh... Maybe it will make for an interesting day.... One can only hope.  The real question is what shoes I will wear ;) a girl needs a sense of style in all things especially those that are dreary. When all else fails buy the shoes ;)