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Wednesday, November 26, 2014

Thanksgiving a reflection on 2014... time for changes...

Thanksgiving...a time for us to reflect on all we are thankful and grateful for in our lives.  Also for me a time of reflection as I often treat it as the precursor to New Years.





I have a lot to be Thankful for in 2014:
  1. The birth of my daughter Harkin and my other daughter Bridget
  2. That I am alive despite all the challenges and set backs with cancer and complications and internal bleeding from Harkin's c-section
  3. My amazing and wonderful husband - they broke the mold when they made him ;)
  4. My Family - both extended and immediate
  5. The Mom's in both my FSGS and Kick Ass Cancer mom group - without you I would be lost
  6. The completion of chemo
  7. The fact that there is NED i.e. No evidence of disease (see note below)
  8. My kidneys are stable even with FSGS and all the medications I have been on within the past year
  9. The fact I am NOT on any pain medication and overcame the physical dependance that my body craved after chemo was completed
  10. My dog faces Ralph and Maggie my constant cuddle fur babies love them!
  11. My Friends - as my dad would say if you have two to three really good friends then you are very lucky and living richly
  12. The fact I am well enough to work
  13. My co-workers and colleagues - some of you have outdone yourself to levels of epic proportion!  
  14. The fact my basic needs are met.  So many are without a roof over their heads and a warm safe place to sleep.  
  15. My hair is growing back and I am well enough to exercise and be mobile everyday!  
  16. The experience I have been afforded both good and bad
  17. There are so many more I am forgetting but the important thing is I am thankful!
Bridget is Thankful for lollipops specifically blue ones ;)
Updates:

Despite being NED I can't help but to what to check to have a baseline something to work from.  So on Friday I am having a ct scan done at my request and the bone scan is scheduled for December 9th.  I will meet with my Oncologist on January 9th to discuss the results and discuss starting lupron the monthly injection.  

I have also decided I need to start living live again.  I mean really living life.  Stop living in fear of cancer coming back, or my kidneys no longer working, or about what other people think of me so much, or about being the best at everything and stressing myself out so much.  I need to walk away from things that no longer serve me.  Sometimes you need to be in a decent amount of pain in order to become uncomfortable and reach for change.  I am going to make sure I am happy and fulfilled because you are responsible for your own happiness :)


Monday, November 24, 2014

Sometimes you have a crappy day.  Sometimes you have a crappy week.  Then there are times when the month can be crappy and there are even occasions when the year can be crappy.  But your whole life is generally never a complete crapfest.  This portion is however up to you and the way you choice to view it.  Today was not really a great day besides being a Monday.  I will not get into the details of why today was not a good day because well it just was not and there is no sense in whining when people have REAL problems. 

One year ago I had my first chemo while pregnant with my second daughter Harkin.  Harkin is a happy and healthy baby who brings joy to my heart at every turn.  She is a sparkle in a dull day.  She is my little ray of perfect sunshine.  She is just happy to be here!  She went through so much stress while I was pregnant.  I often feel bad for what I put her through even before she came to know this world on the outside.  She is not mad.  She doesn't hold a grudge and serves as a constant reminder there is so much more to life then the everyday stuff we all tend to get wrapped up in and stuck on.  I made a promise to myself when I was diagnosed that I would LOVE each and everyday!  No matter what and that no matter how crappy the day is there is ALWAYS something good in it.  When I retrieve my smiling happy baby girl in the morning that is it for me! 

Besides on the occasion of a really crappy day I always say round it out with a purchase of a pair of new pair of shoes or three! ;)


Wednesday, November 19, 2014

The follow up.... feeling confused

Today I had my three month oncology follow up with Dr. Graham.  On the surface everything looks good.  The lack of energy is normal and tamoxifen can be adding to this.  Other then having a healthy dosage of patience, getting rest, eating right, exercising and drink coffee in moderation (too bad this one will not be happening) that is about all that can be done for now....

I asked if I can start to wean myself off the lexapro and the answer was yes! This helps with hot flashes and mood swings by stabilizing your mood.  It can also be used to treat major depression and anxiety in adults as well and is generally the main reason for usage.  I would like to give it a go and see if I can handle these issues on my own.  To learn more about the drug: http://www.drugs.com/lexapro.html
We discussed how we are going to track my progress and my doctor uses a blend of watching tumor markers in my blood as well as scans when necessary.  My blood will not be available until Friday.

To jump into a quick recap on what is a tumor markers? http://www.cancer.gov/cancertopics/factsheet/detection/tumor-markers
  • Tumor markers are substances found in the blood, urine, stool, other bodily fluids, or tissues of some patients with cancer.
  • Tumor markers may be used to help diagnose cancer, predict a patient’s response to certain cancer therapies, check a patient’s response to treatment, or determine whether cancer has returned.
  • More than 20 tumor markers are currently in use. 
 The two tumor markers we are tracking in my case:
Carcinoembryonic antigen (CEA)
  • Cancer types: Colorectal cancer and breast cancer
  • Tissue analyzed: Blood
  • How used: To check whether colorectal cancer has spread; to look for breast cancer recurrence and assess response to treatment
CA15-3/CA27.29
  • Cancer type: Breast cancer
  • Tissue analyzed: Blood
  • How used: To assess whether treatment is working or disease has recurred
 My doctor advised these are not the end all be all in terms of tracking and in my case upon diagnosis mine were not even that elevated.  This was not very comforting.  Enter my next question: Can I please have a scan done to check for recurrence?  Dr. Graham asked me if I was having any symptoms and why I wanted a scan?  I explained two reasons I have fear in the back of my head that really makes me want to make sure and two too many people in my life have recently been re-diagnosed or suddenly went from an early stage right to stage IV.  I have also lost a lot of people recently both friends and acquaintances to this terrible disease.  Your confidence takes a beating time and time again when this happens.

She granted my wish I will come back to her in 6 weeks time on January 2 to discuss the results of a CT scan and a bone scan.  I already have my CT scan with contrast dye scheduled for the day after Thanksgiving.  I still have to get the bone scan scheduled.  Additionally, at this time we will discuss stopping the lexapro completely and adding a new drug in the form of a shot once a month called Lupron.  What is Lupron and what can it add to the mix you might be asking?

Lupron is a drug used to shut down the ovaries and stop them from producing estrogen so there is less estrogen to fuel the growth of hormone-receptor-positive breast cancer.

There are certain hormones that can attach to breast cancer cells and affect their ability to multiply. The purpose of endocrine therapy, formerly called hormone therapy, is to add, block, or remove hormones.
With breast cancer, the female hormones estrogen and progesterone can promote the growth of some breast cancer cells. Therefore in some patients, endocrine therapy is given to block the body's naturally occurring estrogen to slow or stop the cancer's growth.

There are two types of hormone therapy for breast cancer.
  • Drugs that inhibit estrogen and progesterone from promoting breast cancer cell growth.
  • Drugs or surgery to turn off the production of hormones from the ovaries.
So you might ask yourself no brainer right helps reduce risk of continued growth and recurrence?  Wrong enter my kidney disease FSGS and the LONG list of not so wonderful side effects and well you have a confused chica here.

 One one hand I want to do everything possible to prevent recurrence but on the other hand am I robbing Peter to pay Paul?   In other words will I damage my kidneys at the benefit of preventing a recurrence of breast cancer.  I am not sure what the best thing will be to do here.

Here is a list of the side effects of Lupron:

Less serious side effects may include:
  • acne, increased growth of facial hair;
  • breakthrough bleeding in a females  during the first 2 months of use;
  • dizziness, weakness, tired feeling;
  • hot flashes, night sweats, chills, clammy skin;
  • nausea, diarrhea, constipation, stomach pain;
  • skin redness, itching, or scaling;
  • joint or muscle pain;
  • vaginal itching or discharge;
  • breast swelling or tenderness;
  • testicle pain (used in prostate cancer treatment of symptoms);
  • impotence, loss of interest in sex;
  • depression, sleep problems (insomnia), memory problems; or
  • redness, burning, stinging, or pain where the shot was given.
signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Serious side effect such as:
  • bone pain, loss of movement in any part of your body;
  • swelling, rapid weight gain;
  • pain, burning, stinging, bruising, or redness where the medication was injected;
  • feeling like you might pass out;
  • sudden chest pain or discomfort, wheezing, dry cough or hack;
  • painful or difficult urination;
  • urinating more often than usual;
  • high blood sugar (increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, blurred vision, weight loss);
  • sudden numbness or weakness (especially on one side of the body), problems with speech or balance;
  • sudden headache with vision problems, vomiting, confusion, slow heart rate, weak pulse, fainting, or slow breathing; or
  • chest pain spreading to the arm or shoulder, nausea, sweating, general ill feeling.
Rare but serious side effects may include:
  • pain or unusual sensations in your back;
  • numbness, weakness, or tingly feeling in your legs or feet;
  • muscle weakness or loss of use;
  • loss of bowel or bladder control; or
  • nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).
Sounds like a real treat to be on.....

I am exhausted after today and need to head to bed now.  I need some additional time to process this all.

Here are some additional links to read up on Lupron:
http://www.drugs.com/lupron.html
http://chemocare.com/chemotherapy/drug-info/Lupron-Depot.aspx#.VG1KX4V3_FU
http://www.breastcancer.org/treatment/druglist/lupron
http://www.rxlist.com/lupron-side-effects-drug-center.htm

Sunday, November 16, 2014

Hello my name is....

Wednesday this week I am going to see Dr. Graham for my 3 months post tamoxifen start appointment.  It will also be a year to the day of my start with chemo.  I have the same amount of hair as I had last year so I guess it is safe to say it is growing and that is an accomplishment.  My eye lashes still fall out in cycles.  I happen to be in the middle of one of those.  I am still tired every single day.  Bone tired like check into a sleep clinic type of tired.  I dodn't even need sleep medication.

Still working on body image issues.  The scale keeps going up, my clothes fit different after two kids and multiple surgeries later.  I am adjusting to rock boobs for a lack of better term.  The expanders are very very hard and are starting to hurt a bit quite a bit after each fill.  I am still scheduled for fills through December with surgery some time in 2015. 

I have been getting headaches again lately.  I will mention that to my doctor could be a few things causing that.  I am already feeling the pressure of the holidays and I am trying to rememeber to take everything one day at a time.

I am definetly nervous about my appointment on Wednesday.  I will get labs done and even though I was staged at 2B ductile carcinoma breast cancer with no lymph node involvement I can't keep wondering did they get it all?  Will I have to worry about this again?  Do I need to worry about it metasticizing?  I feel like the security of living life is just well not there anymore.  I worry about if the other shoe is going to drop in terms of my kidneys.  They have done so well for 20 years with the FSGS but what if they decided well today is the day we stop working?  I mean it could happen.  I know I should just go on living life but sometimes I get wrapped up in these things.  They have a way of taking hold of you and wrapping up your entire thought process.





Then there are these other wonderful women I have met through my kick ass cancer mom group and my FSGS group and well in both groups there has been a lot of bad news lately.  Thinks that make it harder and really make you question your own life and everything in it.  Its really hard but I am such a different person then who I was a year ago.  I really have a heard time relating with people.  I feel like I need to walk around with a sticker that says hello my name is ....Kristin and I am...a mother of two, a wife, a sister, a daughter, a hard worker, funny, a bit of a shopoholic, addicted to shoes, sometimes crazy, have FSGS since 7 years old, diagnosed with breast cancer while pregnant, living life one day at a time.  Any questions? 

Saturday, November 8, 2014

Can I just hibernate?

You might be wondering why I have not written in a while....I am so tired I feel like I could sleep for days.  I feel like I get up everyday with the best of intentions instead I find myself frustrated and out of energy by 3 pm.  I really wish I could hibernate and when I wake up it would be warm and sunny spring.


To boot; lately I feel like I am failing at all aspects of my life.  What do I mean?  Well I use to be the 110% perfectionist at everything.  Now I am 80% mediocre at best.  I feel like I am not a good mom because I work full time, I feel like I am not a good worker/boss because I trying to do a millions things at once because everything is screaming its a priority and it was due 5 minutes ago.  I feel like a bad wife because I go to bed some nights by 8:30, I don't always get to empty the dishwasher, clean the bathroom or do one of the many other countless things that need to get done around the house.  Never mind just spending quality time together.  I feel like a bad friend because I never have time to go out any more because all of the other things going on and the fact I am just too damn tired.  I feel like a bad family remember because I don’t' every have time to even call my family.  I am trying to be good to myself but I am bad at that too.  I

I am sick and tired of being tired!!!!!  I want the old me back so bad but I know I can't go back.  It just sucks!  Sometimes the terrible thought of cancer coming back creeps in my mind and consumes me.  This plus a teething almost 9 month old I get anywhere from 3 to 6 interrupted hours of sleep a night.

I am still going to the plastic surgeon every week.  I am taking the kids to their appointments.  I am running myself straight into the ground.  We are not even at the holidays.  I managed to get a sinus infection already but I worked through it.  No I am not looking for an award it is just easier to keep pushing and trying to keep my head above water rather then worry about what happens if I go under!  I mean would I make it back to the surface?

Next the guilt sets in because I am like well at least you beat cancer, at least the treatments are done, at least the reconstruction is going well albeit painful at times, at least the kidney function levels are handing in there, at least you have health insurance, a roof over my head and a pay check, etc, etc, etc....

Body image is a HUGE work in progress.  I have scars every where and they are reminders everyday of what I went through and how strong I am.  I could have a dollar for every stretch mark and scar and imperfection for what my body endured in the last 3 years I would be a rich woman.  I work out as often as I can, I eat as well as I can my vice is currently obscene amounts of Starbucks and espresso shots.  Well between the post chemo healing and the depletion of protein in my body due to the FSGS (kidney disease) I am running on empty often.  I love this picture to the left because well in my eyes this is more realistic of what a post pregnancy and post chemo body looks like.  The tamoxifen is a tough drug to take I have been on it almost three months and I have to battle to keep the weight off.  I mean I really can't cheat too much and if I go several days with no exercise I gain between 2 to 5 pounds :(  Yikes!!!

My reconstruction swap out of the expanders for the implants will be next year some time.  I go back to the oncologist on November 17th and I have a lot of questions for her. 

Sorry this post is all over the place but I am all over the place and tired of being tired!


Saturday, October 25, 2014

Avon Walk - Harkin's trip to ER - Cancer is never really over

Last weekend Michelle and I did the 2014 #avonwalk for breast cancer.  We each raised $1800 to participate in the walk which is 39.3 miles spread over two days including camping in a tent overnight.  Oh boy!  I don't do tents and outdoor things.  I am proud to say we did the walk and raised the money.  Poor Michelle’s feet were wrecked with blisters but we met some awesome people along the way and it felt nice to do something for breast cancer after so many people have done so many great things for me.  I walked in honor of Meg Sager and the rest of the kick ass cancer mamas!  Cancer sucks and it does not discriminate.  I cannot stress the importance of self examinations (how I found mine!)
My sleeping arrangements for the night! Brrr it was cold!

1 year since right mastectomy


Tuesday was the one year anniversary of my first official day out of work on disability as well as my right mastectomy.  I had no reconstruction done at the time and we only removed the breast that had the cancer in it.  I had to wait until after I had Harkin, healed and completed chemo before I could have the prophylactic mastectomy in July with the double reconstruction.  I am still getting expanded every week with the plastic surgeon Dr. Cohen.  I will have two more surgeries one to swap out the expanders for the actual implants and another for nipple reconstruction and tattooing.  Yes when you have a mastectomy they take everything!  This is to ensure you get clear margins and remove all the cancer and hope to stop it from spreading.  It is amazing how many surgeries I have had in just 12 months.  It is amazing what a body can go through in this time.


Trip to the Pediatric ER
On Thursday when I was at the plastic surgeon I got a call from the daycare that poor Harkin had not kept any food down or in her with getting sick.  I ran down to pick her up and something seemed off.  I brought her to Hackensack University Medical Center and she was seen in the Pediatric ER.  She was suffering from low blood sugar and dehydration.  They had to do an iv provide her fluids, zofran for nausea and sugar.  They took blood and ran a panel and found nothing other then being dehydrated and low blood sugar.  Thankfully her sugar level came back up and she was re-hydrated by the fluids.  What a scary experience to have to bring your baby to.  She is finally on the mend poor baby!
A selfie of a baby starting to feel better.  Great distraction tactic for kids by the way!

Dr. Oz show
 This week on October 28th my picture along with a few other survivors of breast cancer will be shared during the show.  http://www.doctoroz.com/

Monday is the nephrologist 
I am so nervous as on Monday, October 27 I have an appointment at Columbia Presbyterian to meet with my nephrologist Dr. Appel.  I had seen him right after Harkin was born and everything seemed well but these days every time I go to the doctor I feel I am waiting for the other shoe to drop.  I have been seeing Dr. Appel for years now as I was diagnosed when I was seven with FSGS a chronic kidney disease.  I originally was treated through CHOPS Children's Hospital of Philadelphia by Dr. Kaplan.  Dr. Kaplan is still in practice but unfortunately when I turned 19 he advised I needed to see an adult nephrologist.  He hooked me up with Dr. Appel and he has been a wonderful and understanding doctor ever since.  Here is to hoping all is going well with my kidney's.

Survivors guilt is continuing...
Another Mom is my cancer mom’s group got really bad news that she has days left to live.  She went into the hospital for uncontrolled vomiting and the cancer spread to her spinal fluid and brain.  She has four small children and a loving husband.  Cancer is so unfair and it sucks so bad these beautiful people and mom's have to suffer so much and then leave their families behind.  I have a hard time every time I hear a story like this because I am doing okay and someone else is not.  It's just not fair and it makes my heart hurt.

I am still taking things on day at a time and I am starting to formulate what I have learned from this journey and I am going to be looking into starting a charity that will allow me to give back to Mom's that are pregnant with cancer.  Not just breast cancer because cancer does not discriminate and everyone needs help especially those who have been diagnosed while pregnant there is a battle going on for two! 

Sunday, October 12, 2014

Goodbyes, loss and letting go

To say the last seven days have been tough would be an understatement.  It started with October 4th my diagnosis day.  I thought I would be okay.  I though I would be happy.  I thought I am turning 30 this year is going to be different.  What I got instead I did not expect.  More loss and life lessons.

On Saturday October 4th my chemo buddy Andrea or as I affectionately called her Annie decided to go into hospice.  She had fought long and hard for 18 months with lung cancer and the battle was getting harder and the pain was mounting.  It was an honrable decision.  She fought as long and hard as she could beyond the measures of what others may have been willing to do.  She lived life to the fullest.  Annie passed on October 8th the day after my 30th birthday and is now resting peacefully in heaven.  I hope she is rocking those killer heels and dancing away up there!  She had such an infectiously happy spirit you could not help but smile in her presence.  She loved sunflowers so much and she was a beautiful sun flower in the lives of so many.  I will miss her deeply.

On Monday, October 6th Meg a beautiful mom of two, wife, teacher, friend and so much more from my cancer mom group lost her battle to cancer.  She had breast cancer while pregnant and had a beautiful daughter about a month after I had mine.  I am having a hard time wrapping my head around this because well it is not fair!  It sucks!  I am mad for her not getting to finish out her life.  She didn't get to see her girls grow up.  She has a wonderful loving husband who is left without his partner.  Why?  I don't get it? 

Smack in the middle of these two tragic events On October 7th I turned 30.  Needless to say I feel numb and not very celebratory.  I am so mad at cancer!  I hate everything about CANCER.  This stupid pink month is about to push me over the edge! 

I am tired of people telling me to be happy it's over.  It's not over!  I have to go to the doctor constantly.  I have to take a pill everyday for 5 years or more that will hopefully make sure it does not come back.  I am still doing reconstruction and every time I look at myself in the mirror my whole torso is marred with scars and visual reminders of what cancer has done to my body.  Forget the emotional scars and wounds that you cannot see.  Cancer hurts!  Cancer kills.  Cancer sucks the life out of you.  It is not just over one day! 

Not to mention I still have a kidney disease.  I still what in fear for the other shoe to drop.  To get the call my kidneys are declining and begin discussion for dialysis and a transplant.  I don't know if this day will come.  I pray it does not but it is a real possibility.  My life has always been full of crazy twists and turns and nothing really going very smoothly.  I am use to this by now but I am also very tired and I am only 30! 

I find it harder to connect with people these days.  Unless you have walked in shoes similar to mine it is hard for me to relate.  I don't understand where  you are coming from.  I know that sounds stuck up and terrible but it is true.  I am not sure how to bridge the gap with people any more. 

I am scared out of my mind!  What if the cancer comes back?  What if the doctors missed something?  What if I die and leave Ken and the girls?  What does my future look like?

I am usually very positive but this past week has hardened me a bit.  I hope I soften again but I am finding it harder and harder each time I get a new blow.  Today I am searching for the light and praying for a better tomorrow. 

A few links I would like to share:

Meg Sager's donation page to help her husband and the girls.  Please consider donating to this beautiful family.
http://www.gofundme.com/fj48pg

Tomorrow October 13th is metastatic Breast Cancer awareness day.  Know the facts and learn more about how breast cancer is not just a cute pink ribbon.
http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer

Just let go