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Sunday, September 6, 2015

On the Eve of our 7th wedding anniversary

On the Eve of our 7th wedding anniversary I can't help but reflect back on our vows "in sickness and in health",  Yes, you say those words or a variation of that or maybe even something you wrote yourself (kudos to you if you wrote them yourself) and you are nervous, elated, giddy, excited, in love and another host of emotions that you do no really allow the weight of those words to wash over yourself.  I am now at a point in which I can reflect back on what this truly means as I am a lot two years out from my cancer diagnosis.  Here is what "In sickness: REALLY MEANS......

A husband who comes to the appointment when you are diagnosed with stage 2 breast cancer while pregnant with your second child, another girl of whom you named Harkin and told her sister Bridget she is going to be a big sister.  AT this point forward you make a decision to fight for both your life and the life of your unborn child TOGETHER.  From this moment forward is the when the in sickness part kicks in hard core.  My husband held my hair back as I vomited my brains out, shaved my head, held me as I wept uncontrollably, became my insurance coordinator, doctor coordinator, disbursed information out to anyone who needed it as a central contact point, shoveled endless show throughout the brutal winter, food shopped, watched our 20 month old daughter because I was too sick to move, drove me too appointments, held my hand and let me squeeze the crap out of it every time they stuck me with another needle, watched me loose a ton of weigh and then gain a whole bunch too, took care of my surgical sight after they lobbed off my right breast, emptied my drains from my mastectomy, drove to to the emergency room to ensure I got fluids and a Doppler for the baby after hours of vomiting, walked the dogs, did the laundry, cooked, cleaned the house, gave me foot massages, always told me I looked beautiful even when I felt like shit.  I can't really think of one horrible terrible thing that someone would need to consider doing for another person and he did that and then some.  I will spare the rest of the details but you get the point.  I LOVE THIS MAN beyond what words can really even express.  He is the ying to my yang.  Life without him would not make any sense.  I  am blessed he stood by my side and even more.  so what is this man doing on the eve of our7 year wedding anniversary??? Building Ikea furniture and getting our new house in order.

Ken I just want to say I love you always!  Now and forever and definitely in sickness and in health!  here is to many more years in the healthy zone!

Friday, August 14, 2015

I found a new oncologist!!!!!

Big news Friday!  I found a doctor that is willing to take my case on and work with my existing
medical team!  This is HUGE!!!! I am in maintenance mode for hormone positive breast cancer and I take an oral pill daily that is an aromatase inhibitor as well as a month lupron injection.  This combo puts me into medical menopause and keeps estrogen and progesterone from surging and potentially allowing for recurrence.  I will be going to see Dr. Jane Meisel out of the Emory Winship cancer Institute.  This is a huge relief to find someone who will continue my current treatment path.  I am going for my first appointment and lupron shot August 28th which also happens to be the day of our new house closing.

This has been a tough week for me as within my cancer community
there has been a lot of bad news including recurrences and beautiful young life's lost.  I hate cancer it is really unfair and it takes so much away.  It also shakes your confidence especially when you have overcome something so ugly.  This little voice in the back of your head pipes up what if?  What if the big c is still in there waiting to strike again.  I panicked for a second this week and then I said you know what I GOT THIS!  Mind over matter!  It also helped I spent time with a fellow co-worker from NJ who had his own battle with the big C and won because he is awesome and has a great attitude and is a wonderful person.  Life is like a bicycle you have to keep MOVING to ensure you don't fall down and loose balance.  Life is meant to be lived to the fullest extend it can be.  This is different for each and every person!

Still looking to meet some local friends.  I need some girl companionship.  Missing my sister and my bestie.  A sister is an amazing person to have in your life.  Mine is a strong intelligent capable women who I could not be more proud of.  She always has my back and we might not see eye to eye but she is my balance and check as well as my life line.  I need a mani/pedi companion and someone to help me when I am struggling with my hormone induced frenzy from the lupron/aromatase combo lol. I know Ken would appreciate it :) :) :) 

As for the girls they are doing well.  Bridget still missed her Hawthorne House, friends, and school.  She is starting to adjust to everything.  Her favorite so far is her weekly Friday Ballet class.  I am glad there is something that is making her happy.  As for Harkin full on language explosion is just around the corner.  Stay tuned.  

Sunday, August 9, 2015

28 Days, finding a new doctor

I have started a challenge called the Little Black Dress Project run through a husband and wife trainer called Get Fit Now PT 

I did this for a more then a few reasons:

  • I have gained weight since starting Lupron and Aromatase
  • My joints hurt badly every day
  • I am stressed out and need to release stress
  • My body image is not that great
  • It is very HOT in Georgia and I need to tone up more then a few things
  • I would like to meet other local women
  • I cannot motivate myself with working out - I have tried and loose interest in 10 minutes
  • I am constantly tired - hoping to regulate my fatigue

This list could probably continue but I will spare you all the laundry list of self loathing.  I have
Lupron devil
committed to eat right everyday and work out 4 times a week.  My goal is to drop a dress/pants size to start and loose and maintain keeping 10 pounds off.  I really do not what to do battle with my closet and body every morning when getting dressed.  I also realize I need to cut myself some slack as I have had two kids and cancer but the reality is I just want to be healthy and I am tired of looking at the scale creep up and for people to tell me oh its just the medication.  Well even if it is just the medication I really need to get myself in check otherwise after 5 years of this regimen I will be 50+ pounds over my starting weight.

I hate cancer it is the gift that keeps on giving.  I mean as if loosing you hair, multiple surgeries, pain medication dependency, mastectomy, reconstruction and other surgeries plus forced menopause was not enough.  Enough is enough already.  I am the working mom of two toddlers who just moved my entire life to another state I wish someone would tell my body to cut me some slack.  No such luck! So time to take matters into my own had and give a regime a try!  Meanwhile my hot flashes are just well out of control in this oh so lovely August Georgian heat!  I am going to call them my power surges! Maybe for Halloween I am going to make a costume about power surges :)  I can be electric!

I am having a REALLY hard time finding an Oncologist or a doctor that is willing to administer the Lupron shots that I need monthly.  The issue is I am not deemed and active cancer patient rather a maintenance cancer patient.  This is very frustrating!  I am not actively in surgical, chemotherapy or radiation paths and I am on a targeted hormone therapy to keep the cancer from coming back.  I know they are very busy saving just diagnosed patients but those of us who have moved from active to maintenance are just as import I can assure you.   In July I flew back to NJ for the shot.  I reached out to Emery and provided them my scenario and current treatment path.  They are going to try and find a doctor within their current team that is willing to work with me and my current doctor team in NJ/NY.  I have the kidney disease FSGS that also makes things slightly more complicated.  I still plan to see Dr. Appel in Columbia once a year. I will follow up with them on Monday.

Family update:  Ken is doing well and adjusting to the new environment.  Bridget and Harkin love their new school and friends.  Bridget very much misses her Hawthorne house and school and her friends.  She still asks for them all the time.  She has started ballet through the school and seems to really love it.  We have reaches a stage of toddler hood that I was not prepared for all the crying and whining and tantrums.  I am at a loss for how to discipline and keep her in check.  The dogs are adjusting nicely and making friends with the locals and enjoying the scenes.  We met Riley the Cairn Terrier :)  We are thinking about getting another dog when we get into the house in September.

Request for Donations:
Please consider donating to Jennifer Doolabh.  She was diagnosed with cancer during her third pregnancy.  The doctors only gave her weeks to life and despite all odds she has held out to see her son through his first birthday and to 19 months old.  She is now going to spend time with her family and stop treatment to cherish time with loved ones.  No amount is too small and will help this family as they say goodbye to their warrior Mom.

IBC Network and Ashleigh's story:
What is IBC?  It is Inflammatory Breast Cancer, Different to what I was diagnosed and it can be very aggressive and claim the lives of those diagnosed with this type of breast cancer.  I met a few wonderful ladies at CancerCon on April that had IBC, one of which was also diagnosed during pregnancy.  This type of breast cancer needs more attention and education about it which is what Ashleigh was set out to accomplish as a young mother.  All though I never met Ashleigh personally I feel drawn to her and her story.  I would like to propose you learn more about the IBC Network and even more so about Ashleigh's story.  There is a Gala in her honor this Thursday Night in IBC network - Atlanta-hope-lives please consider donating as all proceeds will go towards research.  Ashleigh was a 30 year old mother of two, just like me.  This does not get easier and all I can do is implore the importance of self breast exams, mammograms, genetic testing especially if it runs in your family.  Please take a moment to think about yourself.

Thanks for reading hope everyone is doing well.  Take care of yourselves!

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!