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Monday, May 18, 2015

Reflecting...

The funny thing about graduations is they always make you reflect back in time.....

Today I got a lovely note and graduation notice from a very special woman who helped not only Harkin but myself when I was in a really really rough patch in the taxol treatment last year.  I remember barely being able to get to the bathroom because I was so sick never mind watch a newborn and now here we are one year later with so many things in our lives to celebrate. She always listened to me ramble on about whatever was troubling me and then went beyond that to make sure I was okay.  She was like a second mom when I really needed someone to take care of me.

Now here we are one year later and I am a few weeks away from moving to Atlanta for our relocation with our jobs and she is a few weeks away from having her first graduate from high school.  So surreal to think of myself as bald and struggling through a very hard treatment and here I am today back to work and life, enjoying my kids and living my life instead of being on the side lines.  I don’t think I would be where I am today without the care and attention the Bella's gave to my family.

Today is also the day 8 years ago that my wonderful husband proposed to me at the place we hung out the first night we met The Rockefeller overlook.  I remember cleaning all morning and running around trying to get ready for Ken's graduation party and when we were driving to his parent house we started driving in another direction and I was all pissy about why we were not going where we needed to be.  He causally responds that he wanted to take some pictures with his new camera.  He pulls off into the rest area and coaxes me out of the car.  He sets up his camera on a tripod and starts taking pictures of the landscape.  He then asks if I will sit on a rock so he can focus his camera.  I protest saying I am yucky and dirty from cleaning all morning and remind him we have things to do.  He pleads with me and I say fine and proceed to sit down.  Now he is jumping around like a nervous squirrel.  He is setting things up and starts taking pictures.  Then he comes over and says we need to take a picture together.  Again I protest but he says please just one.  Fine I say.  He goes over and puts the camera on timer and we take the first one.  He goes back and says it is out of focus we need to try again.  He sets it up again and say this time you need to look at me.  While I am trying to argue with him about this he starts to go for his pocket and starts to pull something out.  I am not paying attention and he opens a box and says will you marry me? snap picture takes.  this is a result of the above picture and here we are almost 12 years later together and 7 of those married with 2 kids.  Where did the time go? Oh yeah and that pesky thing called cancer!


This is the time of year for graduations and moving forward onto the next chapter. 

I have to call out my wonderful and amazing sister Jen!  She is going to be graduating from John Jay with a masters in psychology and I could not be more proud of her for following her dream!!! She is one of my two amazing sisters!  Love you both and I am so proud of you and Aus!

Monday, April 27, 2015

2015 CancerCon = New Friends!!!!

Aflac Duck!
Since being diagnosed with Breast cancer I have felt different add the fact I was 28 and pregnant and diagnosed I felt like I might as well be an alien from outer space.  I really just felt like I did not fit in and had a bit of a hard time relating to people with normal lives that did not include cancer.  That changed this weekend completely!  I went to CancerCon in Denver, CO and it was the most transforming experience ever.  I was able to meet Jennifer who I have been in a facebook group with and corresponding back and forth for almost a year now.  We then met another amazing women who was also pregnant with cancer at the conference.

This conference was for young people between the ages of 15 and 40 who have been diagnosed with cancer, still have cancer, beat cancer, are an advocate or a caregiver to a young adult with cancer.  They have amazing workshops and guest speakers of all kinds.  The playing field is level no one tries to out cancer another.  We have all been through our own hell and back some more then one time.  We are instantly connect by this crazy bond of having cancer in our lives.

One of my favorite sessions was the just for girls session.  It felt like the scene from mean girls when they were all open and honest about their issues and struggles as a young woman with cancer.  We were all open and honest and it lead to great dialogue and honest conversation.  It was great to find other people who get what living with cancer and the side effects that last long after not to mention the hormone therapy that I am currently on to prevent a recurrence.  I never would have asked for cancer but I have learned some amazing life lessons, perspective and wonderful friends as a result!
Resources:
Stupid cancer - http://stupidcancer.org/
CancerCon - http://cancercon.org/

What is CancerCon and Stupid Cancer all about!?!? i'm too young for this!

Stupid Cancer, a 501(c)3 nonprofit organization, is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media. Our innovative, award-winning and evidence-based programs and services serve as a global bullhorn to propel the young adult cancer movement forward.


Young adult cancer (age 15-39) is largely unknown in the war on cancer with 72,000 new diagnoses each year. That's one every eight minutes. This is not OK! This neglected group—now millions strong—has limited resources, inadequate support, and, more importantly, a lack of awareness and understanding from the community around them.


Some new additional breast cancer resources I just learned about:
Rethink Breast cancer - http://rethinkbreastcancer.com/
Living Beyond Breast Cancer - http://www.lbbc.org/
the IBCnetwork.org - Inflammatory breast cancer https://www.theibcnetwork.org/


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....