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Sunday, July 19, 2015

We moved p.s I am a Medical SNOB

So we did it.  We officially moved from Hawthorne, NJ to Sandy Spring, GA to a temporary apartment until our house is done sometime at the end of August.  It took us two days and two packed cars to get here with two toddlers and two dogs but we made it.  There were tears before during and now still after.  So far it feels like we are on a strange vacation in which we go to work.  The new office is nice, I am not use to being in a high rise or parking in a parking deck.  The traffic can be horrible and average all in one commute.  People are generally more friendly and mild mannered down here.  IT IS HOT!!!!

I have gotten to hang out with one of the kick ass cancer moms which has been nice.  I miss my sister every single day she was the one who would totally make me laugh or call me out when we would go for a Starbucks run.  She is a great shoulder to lean on and I miss her terribly.  I also miss my best friend she is in MD and well MD to NJ was a short drive this is not a hop in the car see you in a few hours kinda ride.

The girls are adjusting to their new daycare which is amazing but they miss their routine and their friends.  It is tough no having any babysitters = NO DATE nights and cramped quarters will us all in the apartment.  We have ventured out to eat and try a few activities some successful and others yielding two screaming toddlers who are melting down.  The apartment is nice but there is a lot of walking and you need a key to get anywhere.  Looking forward to being able to spread out a little more and get our stuff out of storage.

This past week I got really worn down and I came down with a sinus infection and ear infection.  My primary care doctor in NJ is on vacation in Europe and I had not established a doctor down here yet.  I landed up going to an urgent care, doc in a box type of place and well I was not impressed $125.00 later and 4 prescriptions I was annoyed.  Because well I hate explaining to the doctor my history and background.  They get wide eyed, need to excuse themselves, get a book out, call in another doctor, need to be comforted and assured I am okay and well is gets old.  Man/woman up!  I am the patient!  Repeat, I am the patient!  I came to you for help and medical advice remember?  I don't mean to sound like a medical SNOB but I have gotten off the table and walked out of doctors office before.  I suffered through it because a. I was sick, b. I was tired and c. I just wanted the damn antibiotics so I could get in out and on my way.  I am mad at myself for paying that amount and for getting this run down.

I also have to say this Lupron and Aromatase inhibitor is a wicked drug combo that makes me hurt every day all the way down to the inside of my bones and joints.  It plays mind games with you and makes it as if you are staring in a fun house mirror daily.  I read an awesome article for it's complete honesty and rawness today  The author is right the after is even harder then the during and here is why.  Everyone is with you cheering you on like a reality TV show you are visibly sick i.e. you lost your hair, you look gray or yellow or both, you are weak, medicated, and have either gained weight due to steroids or lost weight because you cant keep a meal down and the list goes on.

After your hair comes back, they are monitoring your health, you skin returns to have color and your appetite returns and you look like you are rocking it!  Bam you got this!  Then when everything fades away and you are left with these terrible side effects of this damn disease and the stupid drugs you have to take no one gets it.  You are 30, yes 30 and your body has been through the ringer and back,  You have been sliced, diced, deconstructed, reconstructed, taken toxic chemicals, had children, lost weight gained weight and so on and so forth and now you deep in your bones hurt, have no energy and think how am I possible going to do this today never mind 5 to 10 years because doctors have no idea what to tell you.  You have now medically been slammed into fertile 30's to medical menopause. within 18 months you birthed a child, went through the fight of your life and had your femininity screech straight into a wall 60 to 0 no brakes.  That shit ain't pretty!  You cry during staff meetings yes that's right I decided first staff meeting in Atlanta lets introduce the hormones of menopause will hello my name is Kristin and insert waterworks lol.  I have a desk fan named sunny
because she is bright yellow and she is my ray of sun shine that brings cool breezes my way!  At least I can laugh at myself because if I did not have snarky sarcasm and Starbucks who knows how the hell I would survive life!?!?  This is me at my desk its my own personal visit to the tropics LOL.  I wish they had a body trade in program I feel like the doll that is living with the refurbished parts.  I test them out and report back failures.  I am not looking for people to say poor Kristin or give me a metal or a badge or even get it but if you do ask how I am doing please mean it and be willing to listen. That's all.

Sunday, June 28, 2015

3 days what?!?!?

This time last year I was going through a whole bunch of changes... I had just finished chemo, had my port out, stayed home with Harkin as I was trying to do things on my own, fighting a chemical dependency I had built up with pain medication and such during my struggle with taxol and post surgery and gearing up for the left mastectomy with reconstruction at the end of July and then thinking about going back to work.  I was scared and it was hard so much change in so little time.  As I reflect back on this time everything worked out but I realized no matter what I have always had a lot going on in my life.
Today this Sunday as I sit here my entire world is about to change again.  We are leaving NJ in three days, the girls will start a new school.  I will transition to a new work place and there will be new faces and names to learn while we say goodbye to so many we have known and had the pleasure of working with over the years.  I am terrible at goodbyes so I REFUSE to say goodbye its more like until I see you again.

This weekend was full of memories and last times together in NJ as I refuse to say goodbye.  I am so sad because when things changed in terms of all of my past moves I had little say.  I was a child and my Dad moved for his jobs and now the tables turned I am the one moving and changing everyone’s lives.  I can't blame anyone else. I will say I am not going to miss running around cleaning the house to crazy extremes with two toddler and two dogs in toe but I AM going to miss all the wonderful people.  The people who really showed me what love and friendship is all about.  These are the people who rallied around me when I had cancer and was pregnant and then continued to be there for me once I had Harkin and was fighting through taxol and addiction recovery. 

Sometimes I feel like I am a 70 year old women stuck in a 30 year old body.  Now the medications would say I agree with this statement even more.  Previously it was just from the perspective of having been through so much at such a young age but the medications really made me feel old.  My bones and muscles ache every single morning.  Being forced into menopause at the ripe age of 30 is like going out for a joyride, not wearing a seatbelt and aiming for the fat tree full force while accelerating.  It feels like hitting a wall and your body is still screaming and reeling from the impact days even months later.  It is not a pretty fight internal or external. 

My next move besides finding doctors to follow me in Georgia for my cancer remission and FSGS will be a bone density scan because the medications I am on cause osteoporosis and bone weakness and fractures.  I hope I can not only lead a long and healthy life but once that allows me to remain active and enjoy it. 

On top of this my body really thinks I am in menopause because
we medically put it there!  So I am gaining weight and fighting all the other glorious symptoms!  I am going to start a diet and weight management when I get to Georgia as I really feel like I need to up my game and not my pants size!  I have 5 YEARS OF THIS!!!! I sure hope it goes fast!  Because 5 years is a long time to not feel like yourself especially when you are in a new state and out of your comfort zone.  I will do it but I might need some help and a few friendly faces along the way :)  Here is to 3 days before everything changes again. 

Sunday, June 14, 2015

Changes and moving in two weeks....

One thing is for sure life is constantly changing...everyday there are changes some are big and some are small.  Some we put into motion and ask for and others are trust upon us.  My entire life in an heap upheaval right now due to changes.

In two weeks we move to Georgia for our companies relocation into an apartment for two months.  Then at the end of August/beginning of September we will move into our new house in Alpharetta, Georgia.  The kids will both start a new daycare on July 6th.  We pack our house and say goodbye to NJ on July 1st. Its a complete whirlwind....

I also recently got a promotion at work and I while I am very happy to have this opportunity I am also very sad to say goodbye to so many colleagues and people I consider a second family over these past 12 years of working were I do.  These are the people who helped me and my family through our cancer journey.  But not everyone is going to Georgia and not everyone is staying with the company.  This is a major change for us all. 

Additionally I am 6 months into a 5 year treatment plan of Lupron the injection and an aromatase inhibitor I take daily for my estrogen and progesterone breast cancer.  I want to ensure I stick around and do not have a relapse.  Additionally I still monitor my FSGS (kidney disease) I have had since I was 7 years old.  I am not sure what to do with new doctors in Georgia.  The side effects of the lupron and the aromatase inhibitor are kicking my butt...Low energy, aches and pains in my bones and muscles, hot flashes, acne, and other issues.  I do want the chance to be here but these side effects are ridiculous!  Sometimes they leave me the shell of the person I once was. I have not fully found and embraced Kristin 2.0

I know I am not done changing but sometimes I feel way older then a 30 years old in mind, body and spirit.  I also feel like I had a a lot of decisions made for me that I was not ready for.  What if I wanted another kid?  What if I wanted a different career?  What if I did not want to think about my health from the time I wake up until the time I go to bed and my imagination runs wild?  What if I wanted to be normal?  Whatever normal is.....

Additionally, I feel like cancer and FSGS have caused me to meet so many people yet in the same token I feel so isolated.  Like being sick caused people to leave me out of their lives.  I learned through facebook the other day a girl I once new and considered a great if not best friend was engaged to be married.  I am happy she found happiness but she did not even reach out when I was sick or even tell me she was engaged.  She was in my wedding and while I don’t expect to be in hers it would have been nice to even have been told.  I know I should not let this type of thing bother me but I can't help it.  Sometimes it is really hard to find people to relate to me. 

I am still in the process of putting myself back together one day at a time.  My hair is growing.  I died it platinum blonde for a sense of change and control.  Cancer really pissed me off in the sense it took the last remaining sense of control I felt I had left from my FSGS diagnosis.  That is the thing with diseases they rob you of so much!  it becomes harder and harder to deal with people who do not get it.  It being whatever disease you are diagnosed with.  Then those diagnosed with the same that you have make it even easier to get.  

In two weeks everything will change so here is to hoping for the best and that this will propel our family into a good change! 

Monday, May 18, 2015


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!
Stupid cancer -
CancerCon -

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 -
Living Beyond Breast Cancer -
the - Inflammatory breast cancer

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!