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Wednesday, January 14, 2015

A new year blew in a wind of change....

So sorry for the long over due post but the last two weeks have brought a lot of change into my life.  So where to start...

I saw my oncologist Dr. Graham on January 9th.  I had lab work done, an exam and we discussed the new studies published in regards to pre-menopausal women taking Lupron injections once a month and switching the tamoxifen to exemestane.  My oncologist puts me in the high risk category as I had an aggressive fast growing tumor that was estrogen positive during pregnant under the age of 30.  She advised the odds of preventing a reoccurance are better with a drug combo that essential stops the production of estrogen versus blocking the production of estrogen. 

So we agreed to stay on tamoxifen and start the lupron injections monthly on January 16 and try this for 6 months.  To say I am a little nervous about the side effects would be a lie.  In the mean time today I got a call back from my oncologist office to find out my vitamin D level which should be at a 32 is at a 12.  So she prescribed a super high dose of vitamin D that I will take once a week for 12 weeks.  Then after that I need to add vitamin D to my daily intake.  Not the end of the world but I already take so many pills....

In addition to all of this Harkin contracted RSV and was in the ER on January 1 with a fever and breathing distress.  She needed a very high dose of motrin to get her fever down and then they needed to do suction to clear her airways.  Yesterday my husband went to the doctor because he was not feeling well and the doctor told him he had pneumonia mostly likely RSV based pneumonia that eh contracted from Harkin.  So he is quarantined and down and out for the next few days.  I brought the kids to the doctor last night to see how their lungs were and good news both clear bad news Harkin has a double ear infection :(  Poor Hubby and poor Harkin. 

My energy level is still not great and I am attempting to try and get back into the swing of the gym and eating right.  Since starting tamoxifen in September I have put on 7 pounds.  It might not seem like that much with the holidays and all but these things start slow and then spiral out of control.  One of the side effects of all of these medication is weight gain :(  I am trying to eat better but I am often cranky and tired so comfort food items are what I turn to.  I have made a commitment to cut sugar out of my coffee and to eat more veggies and salads.  So far so good this week :)

So onto a few positive things:
  • My hair is growing like a weed :)  
  • I got a new tattoo with one of my best friends in the world. 
  • I am working on body image in 2015 and my expander implant swap will most likely take place in April :)
  • I am finally adjusting to getting back to work

Tuesday, December 23, 2014

On the Eve before Christmas Eve....

I already have all my Christmas presents this year.  A happy healthy baby girl that went through four rounds of chemo, one surgery being a mastectomy and two infections and is PERFECTLY healthy and I just received word from my doctors my CT and Bone scans came back clean!  NED = No Evidence of Disease.  Yes I still need to take tamoxifen and it makes me tired, cranky and gives me wicked headaches but everyday above ground is a good day!

I am sorry I don't post as often as I would like to these days.  Its not that a lot of stuff is not happening in my life because there is tons of stuff happening in my life.  For instance to recap the month of December I went to Germany for my first business trip and an international one at that to present in front of colleagues from all over the globe.  I got to see my old boss who was wonderful to catch up with and share baby stories as he had a son this year himself.  I saw team members from an old global project team I was on when I was pregnant with Bridget my first.  I went to a dear friends beautiful wedding in Disney world that we turned into our first family vacation to celebrate beating cancer.  I am going through some work changes currently but would rather not get into that before I know more.

Here we are the eve before Christmas Eve and I am feeling very sentimental.  I always get this way this time of year.  I think more so since my Dad passed six years ago.  I really can't believe it has been that long.  I am trying to muster up some spirit to do my wrapping and well I am missing it.  I am excited for the gifts for the girls.  I am excited I am not struggling everyday like I was this time last year but I am surrounded by sad news of other fellow cancer fighters who have lost their battle right before the holidays, were just diagnosed or were re-diagnosed with metastasised cancer or passed earlier this year and I miss them and so do their families.  Its NOT FAIR!!!  Cancer sucks!  It aggravates me to the last fiber in my body.  I want to scream at it!   Stop taking my friends!  Stop ruining peoples lives!  JUST STOP IT!!!! 

This holiday I tried to give back to as many people as I could.  I wanted to ensure people felt the love even if they did not know who it was from that I felt from so many of you last year and into this year during my journey and battle with cancer.  I count my blessing every day I wake up and put my feet on the floor.  I am alive!  Thank you God I am alive!  I get to spend more time with my two girls, loving husband, my sisters, my family, my friends and co-workers.  I get to do it ever day.  I make every day count!  I don't care how shitty of a day it is because it is a good day because I am breathing, walking, talking, not attached to machines.

You see the funny thing is we don't really know what is important until a path or a direction shows us what is important.  I believe ignorance may seem to be bliss but the rough edges of life formulate the character that is brewing inside you waiting to come out.  This character is shaped and molded by the experiences and obstacles we encounter.  Every scar on my body (and believe me I am carved up like a jack'o'lantern) stands for another battle I faced.  There are emotional scars that cannot be seen by the naked eye but they are there too.  Pushing me to be the person I am everyday. 

Everyday is a good day!  I promise!  If you need help finding the good just look to those who make it work and are smiling even though they may be struggling.  These are the people who would give you their last piece of bread, share the shirt off their back or simply hold a door and give you a bright smile to let you know hey its okay we are all going through this thing called life and you know it is worth it!

Sending peace, love, light and blessings to all no matter what you may celebrate during this time of year!  Love to all Kristin aka The Pregnant Pink Warrior!!!

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 ;)

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:
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?
  • 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
  • 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:

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!