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Tuesday, December 1, 2015

What now? where is the honesty?

Honesty, we strive for it but do we always reveal the full truth?  Yes, we tell the truth but we choose the light in which we like to reveal it.  Example you ask someone "How are you doing?" and the answer "I'm doing fine."  what does this actually mean? Are they really doing fine or are they just saying they are?  So there is one answer for me...."It's complex."  In my world this is the right answer "I am fine" really ='s "It's complex." and here is why.......

            • Because no one wants to hear the long story
            • People ask to be polite and show face and details can be complicated and messy
            • But you beat cancer so why are you still down, emotional and actively posting about?
            • Moving is exciting!  Right??!?
  • What could you possibly have to be sad, upset_____ fill in the blank
  • Your in remission its in the past
  • You are through the hard part....right?
  • and, and, and.......

Truth is once cancer or anything health wise rocks your world you are forever changed.  It is not a choice.  I like a lot of Kelly Clarkson's songs like stronger and her new one piece by piece resonate with me for different stages of where I am since diagnosis.  Stronger was for the phase I was fighting and piece by piece is for now, the slow and painful rebuilding process.  it si just never really over.  There is this lurking, will it come back, what is next, will the other shoe drop, did I really beat this, etc, etc, etc....  I wish I could say the head games end bu they don't.  I decide to throw myself into life battered and all in order to not be consumed with all the pieces.

So last week Tuesday November 24th to be exact I had the last phase of my surgical reconstructive process.  This was to create nipples.  I know where you might be headed why the heck would you even do this?  Well let me tell you first it depends on the person; there is no right or wrong answer.  Cancer has a funny way of f'ing with your mind especially when you were once a whole person and afterwards you are carved up more then a Thanksgiving turkey.  It takes a toll on your positive body image.  I am trying to get back to feeling like the person I was before cancer.  I am not sure if I will get there in totality but closing the loophole is comforting.

I also found a new general practitioner and we did a load of blood work including food sensitivity and intolerance.  I was advised to go gluten free and dairy free.  My ANA level was 160 and I was sent to a rheumatologist for follow up.  Today I had appointment 1 of 2 we did a photo shoot of the hands, knees and feet.  Well not really I had x-rays and additional scripts written for another intensive blood panel to check for autoimmune diseases and conditions like: Lupus, MS, and a whole slew of other scary things.  I am no ready for this... additional blood work today and results of x-rays and blood work on December 11th  

Last part of my post there are a few very special people to me going through an extra hard time please consider sending prayers, positive energy, wishes or whatever your thing is.  Thank you!

Happy December all last month in 2015.

Friday, November 13, 2015

Cancers over so why can't I be over it

 I know what I bring to the table and I am not afraid to eat alone, a powerful yet true statement.  This is not aimed to be elitist by any means rather it is subject to those who feel I no longer need to grasp on to.  I am done with feeding egos and those who need minions.  I survived cancer bitches!  I am a woman hear me roar!!!!!!  I am thankful for everything those have genuinely done for me on my journey but please remember I did not sign up for, book a ticket or win a scratch off that said yes I will take cancer thank you.  I struggle each and every day!  Yes #thestruggleisreal!  Every day it is real and some days I am ahead and others well I am trailing in the dust.  The other thing I would like to interject into this is if you are a mom and you do not have an ailment, disease or something that causes you extra pain, sickness or issues on top of the everyday I HAVE MAD respect for you.  One, two, three, four plus kids it is tough and YOU are amazing!!!!! You make it happen and so do you Dads out there!  But when you layer a chronic disease, headaches, aches and pains, low energy, etc you hurt but try and show your family your best because you do not want them to know your pain and you do not want to affect them being kids.  You do not want them to be worried, upset or nervous.  Kids are very very in tune with what is happening so don’t think you can pull the wool over their eyes.

So you might ask yourself why I am typing all of this.  Well first of all I just would like to remind those who may have forgotten I am still working through my cancer diagnosis.  I finished chemo 15 months ago which means I still suffer from fatigue and chemo brain.  I am trying I promise you I am not stupid and I would love to remember things coming off the tongue but they just don’t flow the same.  I struggle with body image and connecting with the person I was pre-cancer. 

So complaining is not my thing and I feel we need to move on now….. I finally found a General Practitioner that is down with my issues and gets ME!  I am the type that gets scared when they pull out the text book, can’t pronounce what I have or say things like wait, what cancer? your too young for cancer.  (no shit Sherlock!)  I have been feeling even more tired these days and had a whole bunch of blood drawn.  I tested positive for an autoimmune disease which could be the FSGS which has been thankfully stable but we will do some more tests just to ensure there is nothing else there.  I also continue to struggle with triggers from having cancer some things put me right back there in the diagnosis and treatment like it was yesterday.  I can assure you I am seeking help with this but it is not always an easy thing.  

Next week I head back to NJ to see friends and family for Thanksgiving and I will be back in my cancer center.  I will also be having the final phase of my reconstructive breast surgery.  This is the creation of nipples.  This helps them look more realistic.  They serve no function but I am hoping they continue to help with body image issues I struggle with.

To be honest most days I am really tired and drained.  I feel like I do not give my best anymore and that upsets me.  I wish I had more in me.  I wish I was not so far behind.  I really wish I could go back to the woman I was before cancer but then again I would never know what it is like to be a warrior and to meet my daughter Harkin who is the very reminder of how beautiful life is.  I ask two things be thankful for something each and EVERY DAY and be kind to everyone because you never know what battles they may be waging.  

Thanks for stopping by my blog, reading and catching up.

Saturday, November 7, 2015

An Open Letter

First off I am sorry, because if you are reading this as a recently diagnosed breast cancer patient you just got inducted into the club.  It is the club no one wants to join; admission is not free nor is it cheap.  There was no application process or decision you made.  Cancer unfortunately chose you.  You are not the first and I am sorry to say not the last to join this club. 

We wear pink in October not just on Wednesdays (slight note of sarcasm and reference to Mean Girls here).  Most think breast cancer can be summarized with a pretty pink bow.  I am sorry to say there is not one thing pretty about cancer and a bow most certainly does not cut it.  I was once naive and thought that purchasing pink products and sporting a bow would help raise awareness, sadly I was mistaken.

What I can tell you is ATTITUDE IS EVERYTHING! I was diagnosed with breast cancer 3 days shy of my 29th birthday at 17 weeks pregnant with my second daughter.  There was no family history and really no explanation for why cancer chose me.  I was minding my own business being a working mom and living life or so I thought until I found a lump.  Three days later I had an ultrasound and they exercised their right to do a biopsy.  I knew deep down in my gut when I saw the black mass come on the screen it was cancer.  It just looked angry based on the screen.  I thought if I did not say it out loud then it wouldn’t be real. I was wrong, because BAM out of thin air there was cancer. 

In the moment the words left my doctors mouth “I am so sorry….”  I stopped hearing and feeling, everything went black.  It was like an out of body experience. Then it came, the wave of uncontrolled raw emotion, the confusion of feelings and thoughts and where nothing seemed right in the world. Yes, I had a meltdown in the doctor’s office.  Yes, I shook uncontrollably with hot tears streaming down my face while my husband held me and tried desperately to console me.  To be honest I am not sure how long I was in that office.  I really don’t even remember leaving.

What was I going to do?  How was this even possible?  I am pregnant, young and I have cancer! How the hell did this happen?  What twisted lottery did I win?  It took me exactly 24 hours to get myself into shape.  I made a decision I am going to fight this, keep my baby and win!  Again ATTITUDE IS EVERYTHING!

Why do I keep saying this phrase ATTITUDE IS EVERYTHING? Because, you just entered a battle where initially you were not prepared, Ill equipped, and with few resources and knowledge.  Some of us unfortunately have had a loved one have a cancer diagnosis and may have more experience than others.  But when it is you the game changes, it is different because there is no break and you can’t say no to the club and walk away.  You need to become a warrior with an army of supporters.

I made a public announcement (my personal choice) and began to assemble a team of doctors that would work with me.  I found a network of people through social media that had also been diagnosed while pregnant and had healthy babies and were in remission.  I knew it could be done and I told myself that EVERYDAY!  If someone was not on board in my army of support I would politely dismiss them.  I had no time and energy that I could spend trying to convince someone to join my army I had a mission to accomplish which would have many hard fought battles throughout.

Each Warrior is different because no one diagnosis is truly ever the same.  They each require the right army to help accomplish their mission.  Now back to the club from the beginning; the sad truth is there have been many before you that have been faced with this and we are now your sisters.  We are here to support you, to bolster your army in whichever way you need.  Use us to help build your army and strengthen that ATTITUDE.  Your body and spirit will need to hear from you often that you are committed to the battles that lay ahead. 

I will not lie; there is no easy path ahead.  There are various levels of treatments, medications and surgeries  based on stages, types, genetics, hormone receptors, grades, and other factors I am forgetting based out of sheer complexity.  I can’t tell you what is right for you, but I can tell you the right army includes your doctors, nurses, caregivers, friends, family, survivors and many more which will help support you and find the path and treatment plan to accomplish your mission.  Trust your gut and build the army that is right for you.  Eliminate the negative influences and naysayers as they do not serve in your army.  You are now a warrior whose attitude will shape the outcome of your journey and the battles that lay in front of you.  I will not congratulate you because you did not choose this nor did you deserve this, but I will stand with you.  I will be in your army.  I will support your mission.  Just promise me one thing, to remember that YOUR ATTITUDE IS EVERYTHING! 

Gentle hugs my fellow Warrior! Now off to build your army!

And to get your army started:
It is important when building your army that you also surround yourself with knowledge and options. Educating yourself on treatment options, trials, medications, doctors, clinical studies and research is key.  Knowledge is power!  Precision medicine is a growing presence in the medical field, and could play an important part of a cancer journey. I would like to introduce CureForward, part of their mission is to advocate for patients to learn as much as possible about their treatment options, and they want to play an active role in helping patients learn about and access precision medicine options. This is a huge resource that you can add to your Army!

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.