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Thursday, July 24, 2014

Pissed off!

 I woke up this morning to the usual right hand pain that I have come to known.  It is in my index finger and my thumb, index and middle finger knuckles.  In addition my right hand and finger were considerably swollen!  WTF!  I am over all the cancer extras and surprises!  I am 100% NOT IN THE MOOD!  It makes thing tougher especially handling Harkin.  I just want this shit to be over.  I am really angry today!  I really am over this whole not being in control of what is happening to my own body thing!

I need to speak with the breast surgeon to see what this is because I have no clue.  It could be Lymphedema http://www.breastcancer.org/treatment/lymphedema because it does not sound like Axillary Web Syndrome also known as cording http://www.breastcancer.org/treatment/side_effects/aws.  I only had 3 lymph nodes removed in October 2013 in a sentinel node biopsy as the radioactive dye (aka poison) had spread to them and they needed to be removed.  I did not thankfully have the cancer spread to the lymph nodes which was an extreme blessing.  I also do not have the characteristics of not being able to lift my right arm past a certain angle, there is no visible cords and it is now months after surgery. 

This puts me in a really pissy mood as I really was not in the mood for yet another complication/thing to deal with.  I will be calling the surgeon and praying this does not interfer with Monday's surgery!

Here is a comparison of my left hand (no swelling) vs. my right hand:


Tuesday, July 22, 2014

Almost surgery time...

I got busy with life and have not been writing.  I was intimidated by the blank white page and not quite sure what to write.  Harkin has kept me very very busy.  I am tired still from the chemo as my body is still trying to heal.  Over the past few weeks it has been revealed I did not have post-partum depression as it was my body reacting to the detox and withdrawal of the opiates in my system.  I am relieved to say I feel better and more connected with my life again since I have completed pain management and I am living life to the fullest each day!  

Left mastectomy and expanders reconstruction:
I will be not quite 2 months post chemo (8/4) and I will be getting my left prophylactic left mastectomy and double reconstruction (expanders) next Monday 7/28.  I have to be there by 5:30 am and my surgery is scheduled for 7:30 am and expected to be about 5 hours with a one night stay in the hospital and I will have 4 drains.  I have a pain management plan that includes no diluadid, 2 days of percocet, 5 days of non narcotic pain medication toradol, and than switching to 600 mg of motrin.  I really really hope this works and I am not in agonizing pain.  I do not want to go through pain management and withdrawal again!  To say I am nervous/scared is an understatement.  I am scared of what my body will look like.  I am scared of the pain.  I am scared of loosing my independence.  I am scared for an infection.  I am scared something will go wrong (given I don't always have the best track record).

This is also not my last surgery but it is at least a big step into getting back to me!  We will slowly fill the expanders weekly with saline and than when the plastic surgeon and I have gotten to where we agree I should be then I will undergo an outpatient procedure to have silicone implants put in.  THIS IS NOT A BOOB JOB! So please don't call it that and please don't say I am lucky to get new boobs because to be quite honest CANCER SUCKS and so does surgery and all the crap that comes with it!  My entire life has been interrupted and turned upside down.  My entire torso is marred with scars     and other reminders of cancer.  While I am lucky to have survived all of this as well as have a healthy baby I would not wish this road on anyone.  I am still dealing with the aftermath of cancer, chemo and trying to reclaim my life.  I take it one day at a time right now because that is till the best way to manage all of this.   

The Bella's
Ken and I have the Bella's coming back in to help for two weeks.  I will than reluctantly start Harkin in daycare so I can heal some more before I go back to work in September.  It will be 11 months out of work by the time I head back.  This is another concept that scares the hell out of me.  Adjusting to going back to work after such a long absence as well as balancing two kids and still recovering from all of this! 

Summer is flying by!  I have been busy going out to lunch, throwing and hosting a baby shower for a friend is going to have her first little girl in October, meeting wonderful ladies through Lady Savant, running errands and of course savouring every moment with Harkin who amazes me more and more each day.  While I am not cut out to be a stay at home mom.  I love this little human more and more each day along with her sister Bridget who is just accelerating in terms of speech, coordination, movement and so much more everyday.  My girls complete who I am as a person.  I was always meant to be a mom and I had no idea you could love someone more an more each day to the point your heart aches from the love you feel.  

My Kidney's
It was revealed during pre-surgical testing that my kidney fuction is the best it has EVER been!  This includes all the way back to when I was 7 years old and diagnosed with FSGS.  The drug cytoxan used in lupus patients who are facing kidney failure is a chemotherapy drug I received while I was pregnant along with adriamycin for breast cancer.  In a strange twist of events this drug actually yielded two benefits for me.  It fought breast cancer and it improved my kidney function.  Potentially I may be in remission with FSGS!  I will need to see my nephrologist before my return to work to see how the kidney's are holding up but there is some very positive signs!  

The Tales of Reese
I would like to bring attention to Tales of Reese https://www.facebook.com/TalesOfReese?ref=br_tf which is an amazing Book series by author "Books by Sparkly Ray" in which Reese, Ruby & Cruiser help children understand the illnesses they are facing (like cancer) and make their wishes come true.  it is very motivational and touches on the human spirit. 



Challenge for my recovery
I would like to challenge those of you who are interested to commit Random Acts of Kindness after my surgery and share your stories and interactions with me.  I am going to be focusing on dealing with pain and getting better and I thought what better way than to hear beautiful stories of kindness and generosity.   

Resources and good reads:
If you know someone with cancer this is a really good read... http://roadkillgoldfish.com/friends-cancer-want-know/

It is NOT A BOOB JOB!!! http://medivizor.com/blog/2014/06/13/breast-reconstruction-isnt-boob-job/





Tuesday, July 8, 2014

The limbo zone, curediva intro and a special event with melange spa and Tale of Reese

Right now life feels surreal and like I am stuck in limbo.  It is not bad but not reality.  I am not back to work but chemo is over.  Harkin is getting bigger and stronger and more amazing everyday.  I fought cancer and won which is Awesome!  I am not chemically dependent to ANYTHING right now.  I am watching Harkin on my own.  Yes Bridget still goes to daycare but that is really needed on my end.  My energy is better but still not great.  I have decided I am not stay at home mom material and that does not make me a bad person just an honest one.  I need the interaction with adults and the mental stimulation.  I need to have a check list of tasks I complete each day.  It is just who I am to the core, a Type A personality and cancer has really stripped me of all control to that level of feeling uncomfortable like you are standing in public naked kinda of dream.

Yesterday I had my one month post chemo visit with Dr. Graham and she is very excited with my progress including being off all the pain medication.  I am not sleeping that well but I do not want to take anything for that.  I not only have Hot flashes because chemo can send your body into menopause or chemopause as I like to call it I have these extreme cold flashes to around the same time every night.  At the end of the day I am exhausted to a level that I don't understand what is left over from chemo and what is normal from being a mom and what I can blame on FSGS (my kidney disease).  I do have to say I was not prepared for the lab portion as I thought it was going to be a finger stick and than Aristotle started asking me about the condition of my veins.  I then asked why and he goes because I need to draw your blood.  My right arm is out of the question since the mastectomy.  My left arm the veins are terrible and roll.  Which left just my left hand as the option.  He found a vein and said this is going to hurt and he was right.  At that moment I missed Mrs. Potts my port.  She had been so good to me! 


Yesterday I also got to go to lunch with two lovely ladies both new friends that I have met as a result of cancer.  One is expecting and very excited (thankfully she does not have cancer) and the other is an amazing fighter that had cancer and treatments while pregnant.  She had her amazing miracle son and they are both doing well!  Two things that amaze me and were brought out through our lunch 1: A mother's love is awe-inspiring and 2: it is amazing what our bodies can handle and go through during pregnancy and I am not talking just cancer.  There are sooo many women I know who have overcome so many obstacles with their health and sometimes their baby's health to have a positive outcome. 

This past weekend we were fortunate enough to baptise Harkin and my Tante (aunt in Norwegian) Janet helped us throw a beautiful celebration with our families at her home.  Tante Janet is also my Godmother and she has been so wonderful and supportive throughout my cancer journey.  Harkin did fantastic (no crying) and Bridget was very cute. 

Tomorrow I have my pre-surgical testing for my left prophylactic mastectomy with double reconstruction on July 28.  It's getting close and I am getting nervous for sure.  One because it is a surgery and I feel it is natural to get nerves but two because of pain medication.  I will need to be on something but I am afraid of how my body will react and that I will need to do another step down plan to ensure withdrawal is not overwhelming. 

Two exciting things:
  1. I will be promoting curediva.com through banners on my blog.  Who is curediva.com?  They are a company that provides stylish living through breast cancer as they sell wonderful items that really help when you have breast cancer and are dealing with surgeries and symptoms and so much more.  More importantly they offer support and reassurance through their network of fellow breast cancer fighters through their Diva's lounge. Please check them out and be sure to share with other fellow fighters.  Always good to know your resources!
  2. The awesomely amazing Bella Bambini (http://www.bellabambiniinc.com) company partnered with MELANGE
    MED SPA to Host a Special “Evening of Beauty with REESE”.  I am going to be the Special Guest of Honor! Please join us on July 18th at 135 E. Erie Street Blauvelt, NY. Their phone number is 845-365-1500. Mélange Med spa is proud to partner with The Tales of Reese (https://www.facebook.com/TalesOfReese)for an exciting event!! Proceeds will be donated to “Make a Wish” and Crossfit Kids and myself (to help cover the Bella's over the past months and their upcoming support for my next surgery).  Come join us for a Glamorous night of fun, get to know our adorable Mouse REESE! All for a great Cause!!  I would LOVE to see as many of you there as possible!  I promise it will be a great time!!!!

Monday, June 30, 2014

ANOTHER MILESTONE ACHIEVED!!!!!! PAIN MEDICATION FREE!!!!

Yes I completed another HUGE milestone!  As of Saturday I am pain medication free!  Do I still have aches and pains yes but I am not on anything!!! It actually finished early by accident.  Saturday I was suppose to take my once a day 1mg of dilaudid and I forgot.  When I realized it was too late to take it so I just stopped.  I was a little uncomfortable as my body is still adjusting but I am soooo excited to not be on this stupid medication any more!  As a result my mood and energy levels have improved.  I am still tired between the after effects of chemo and the FSGS (kidney disease) that I still have both rob me of energy but I am surviving!  Key words I AM SURVIVING!!!!

I can't wait to get back to being me.  I am seriously the sick person who misses work!  I really love all the people I work with as they are like a second family.  I have never met such a great bunch of people.  The amount of love and support from the dinners they cook and provide every week to rides to and from chemo and the constant check ins I am one very lucky person.  As much as I love Harkin and spending time with her I am itching to get back to my creative side and get back into the daily life of marketing and just a sense of normalcy and my old life.  I am OVER cancer it sucks the life out of you.  I want to get on with LIVING!

Tomorrow I have a follow up to see how the port removal is healing.  Its a little itchy and uncomfortable but seems to be healing nicely!  I also have a pain management follow up so it will be a day of doctor appointments. 

I am in the process of trying a new schedule with Harkin as I can only really get this kid to nap 45 mins at a clip.  The Bella's are nap ninjas something I am not lol.  Harkin and I are going to get use to spending time with each other of the next few weeks until my next surgery and then the Bella's will be back for two weeks or so and than we will start daycare with Miss Bridget before September and Me going back to work :)  Harkin is also getting super close to rolling over!  I can't believe how big this kiddo is getting!!!

A special Thank you card package arrived today from Jillian a former Hallmark co-worker who is super talented and makes her own cards!  She made me these amazing thank you cards so I can begin to try and thank everyone who has helped since my diagnosis.  As you can imagine this is a super long list so please bare with me and be patient!  I am grateful for each and every thing done for me no matter how big or small!  So Thank You!!!

I am going to try and continue to take things one day at a time.  I think I am also going to limit my posts to once a week as Harkin keeps me on my toes and I am going to try and gain health, strength and quality family time before my next surgery.  I would be lying if I did not think about the next surgery constantly but in the end it is going to be a positive result.  I know it will be painful but I have to remember mind over matter! 

Thank you all for your continued support, prayers, well wishes, cards, text messages and keeping in touch with me.  It really helps and I love hearing from all of you :)

Friday, June 27, 2014

Stay at home moms ARE AMAZING!!!!!!

I have determined the true herons of life are stay at home mom’s.  These women are true warriors and unsung heroes.  Yesterday I had my first day home with Harkin and no Bella's aka baby nurses and well I was ready to pull my hair out by 5 pm!  This was without Bridget being home mind you as she goes to all day preschool.  If not she would be climbing the walls and I would be spin around on the ceiling fan lol.  Harkin is teething and naps a total of 45 mins at a time for me.  So I was use to getting these nice long naps when the Bella's were here to recuperate. 

At this time with Bridget I was at the end of my maternity leave and she was watched by a friend a few days a week and by my mother in law/mom and eventually we transitioned Bridget into full time daycare.  I am still recovering from chemo, port removal and gearing up for my left mastectomy (tomorrow is a month away YIKES) and reconstruction July 28.  So for the month of July we were trying to save money and not have the Bella or put her in daycare.  I remain optimistic but this really is a one day at a time thing and I have to get use to not having the same level of energy as when I had Bridget.

My obstacle after Bridget was loosing the baby weight and then some as well as my FSGS (kidney disease).  Now I still have the FSGS but add the surgeries and breast cancer chemo crap to the list and I am wiped out!  I can barely keep my eyes open to spend time with Ken at night.  I feel bad because when Bridget comes home she is full of energy and wants all my attention.  I am also trying to find the balance of how much time you need to actually to spend with you baby.  I mean how structured do you really get?  I am an a type personality to the extreme.  I fill out a baby tracker every day!!!  I wish I could stop myself but I cannot!  I hate messes and treat most things like a work project and try to find perfect solutions.  I have been this was for a very long time.  I also like things within my control.  When you have a work schedule you can CONTROL it when you have a baby schedule you can GUIDE it but not control.

You might ask how am I typing this post today well I have Bella help today and again on Monday for an appointment but after that well I am free and clear and I even have some lunch plans and appointments Miss Harkin is just going to have to come along for because I need to prove I CAN DO THIS!  It's a good thing she is so gosh darn cute!  Here is a picture of the little snapper from this morning :)

I am also on the last leg of my Pain management step down and will be finished on July 1st!  This is huge mind over matter accomplishment!  This has been a VERY tough road but I AM DOING IT!!!!

My hair is growing and I need to come up with a transition plan so here is what I have got.  What do you think?  I am going to start with the left and work right and try and follow Charlize's hair growth.  I also got turned on to an AMAZING eyelash product!  It uses fibers to built on what existing lashes you already have.  Its called Younique fiber lashes and man it really works!  https://www.youniqueproducts.com/lashesbyk

I just want to give one more shout out to you stay at home mom’s!  Keep rocking at what you do because it really is labor of love and your families would be LOST without you!!!!



Tuesday, June 24, 2014

Another milestone achieved!...than why so blue?

Yesterday was another major milestone achieved with the removal of my port.  I was thinking the procedure would go like my wisdom teeth removal went and I would be knocked out completely but no such luck.  Because of my high tolerance my body has built up again drugs like dilaudid and fentanyl I was wide awake for the entire procedure.  The doctor said I should have been knocked out with the 3 doses he gave me!  I did not feel the cut or the stitching but I did feel the tugging, pulling and removal of the port.  It was weird for sure.  I am going to miss Mrs. Potts the port.  She served me well.  One the skins heals I will be getting a tattoo to cover the scars of the incisions. 

Because of all of the medication in the form of fentanyl yesterday I started again with withdrawal symptoms again last night and this morning.  Including feeling the creepy bug feeling, a little blue and tired.  I decided not to fill the pain prescription they gave me as I do not want to set my pain management plan back any further.  The drug is called Xartemis and it is oxycodone hydrochloride and acetaminophen extended release tablets.  I read how addictive it can be and decided not a good thing to add to the mix and I don’t need to be hooked on something else.

Regular Tylenol and advil does not take the pain away but makes it tolerable to deal with the incision and healing.  I have one more step down in pain management this week to the final dose and than I am finished with pain medication specifically dilaudid on July 1st!!!!!  This I consider to be a HUGE milestone for me!  I am getting rid of another medication on the list of things I take and I am hoping my stomach will continue to learn to regulate itself.

I am definitely starting to get scared for my next major surgery at the end of July.  That will be here in no time! I am afraid of the pain, I am scared to lose my other breast.  I am just pain scared.  Its like I want to crawl into a little ball and pretend everything is just fine.  The logical part of me knows this is not an options and I am a fighter which is why I elected to have this surgery to ensure that in the future I have done everything I can to make sure cancer does not come back!  Also this will put me on my road to recovering my life.  Going back to work, being self sufficient, and hopefully putting this bad memory of cancer behind me. 

Monday, June 23, 2014

Port comes out today

Today, this morning, my port comes out!  I am excited, nervous, scared, upset and a few other emotions all tangled into one.  My port that I named Mrs. Potts served me well and she was a constant stabilizer in my chemo journey and today.  Today that stabilizer is being taken out.  It all seems a little bittersweet. 

It feels good to move onto the next chapter but I am going to miss her.  After this week the Bella's also go away and I will be on my own with Harkin.  I realized after speaking with some mother's over the past two weeks some with cancer and others without, that we are all trying and we all have our down days and our moments where we feel like we have failed or that "mothering" is overwhelming.  I still wrestle with these feelings and emotions but they are getting easier to contain.  I did start a mild antidepressant to help with the step down in pain management and to even out my emotions.  It seems to be working but it feels weird because it is hard to get upset.  I have always liked to feel my emotions even when they are raw reminds me I am still human.

I so started the next step down in my pain management taking 1mg every 12 hours of dilaudid.  This is big!  I am excited to continue gaining control over my body and reduce medications and such.  My stomach is the slowest to come back along with my energy level.

I don't generally do too well with anesthesia so fingers crossed I don't puke!  Ken will most likely post an update with how I am doing once the procedure is over or it will be me.  We will see.