An Open Letter to the President

Mr President-

I sit here reading a report that resulted from a phone call you made to a Washington Post reporter today after the health care bill you so desperately wanted to see passed today was pulled from the floor without a vote.  What I read is disappointing to me on so many levels.

I was not a fan of the bill, so I won't pretend to have been disappointed that it wasn't successful today.  The Affordable Care Act (so fondly remembered as Obamacare) does need help, few would argue that- but I don't feel that the plan presented in the bill put forth this week was the one to get us where we need to be.  Too many holes in the healthcare system with no answers on how they were to be filled, in my humble opinion.

Still, this was not where my disappointments came in with regard to the Washington Post phone call.  While I applaud the fact that you reached out to the press, it was the tone.  The content.  I could understand you being upset over needing to go back to the drawing board and working up another plan- THAT would not disappoint me Mr President.  That would actually garner some respect from me because it would show me how much you care about making this the best plan it could be for each and every American- Republican or Democrat- Libertarian or from the Green party or an Independent who prefers to stand unaffiliated with any party.  But that wasn't what I saw in the reaction based on the reporting.  I saw the standard response I see every time.  Bitterness and a penchant for lashing out at "the other guy".

"Those Democrats" are the reason the health care bill failed.  "Not one Democrat" was going to vote for it.  In a Republican majority congress, it is all about those pesky Democrats.  NO mention of the Republicans who apparently failed to side with the party and didn't think it was a good idea either, because it wasn't going to pass even with the support of it's own people behind it.  

Most of all, not one mention of the people who are supposed to be benefiting from this.  The people who need help from the bill.  People who must purchase their own health care coverage.  Let us not lose sight of who and why this bill is being written.  They are your customer.  They are your BOSS.  They pay your paycheck.  Don't forget them!

All of the focus was on waiting for Obamacare to explode.  The Democrats own it, it is now totally the property of the Democrats.  It's in for some rough, rough days.

And while we are on the subject.

We all own the health care system.  The democrats do not own it.  Sorry, they don't

The election is over.  Done.  IN THE PAST.

How about we get past the name calling, bad mouthing and get down to the fact that you are leading one country...tis of thee and all that stuff we sing about?  Remember that?  The Pledge of Alliegance?
One Nation?  Not two divided by party affiliations.  ONE.

We should not be waiting for one group to fail and come running back to ask for help.  We should be working together for a better America.  What kind of a lesson is it for our children when the leader of our country is acting like some cross between Jeff Dunham's Grumpiest old Man "Walter" and a 5 year old who doesn't want to share his toys?    All you get is a bitter pill who says words that don't make sense.  Explains a lot.

Please remember that you are working for us.  Start showing us you remember who we are.

Your One Nation.

America.

Goodbyes are hard

Christmas is almost here.  Tomorrow is Christmas Eve.  I am not ready, not even close.  Even so, I feel like I need to get this blog post out of my head.  Maybe it will help me to clear out things.

December 10th was a day that was supposed to be fun.  I was in New York City with two of my kids on a bus trip when the call came.  We were in Kinokuniya- a book store which was to be one of the main stops of the trip.  Top floor, at the Ghibli display.  I had just started to look at the selection.

I knew when I saw the number.  It was the 2nd floor nursing station at the home where my dad has been since March 2005.  I knew before she even started to talk.  You see... Dad had been sick a couple of weeks before, but had rallied.  He had pretty much come back to close to his previous self- well as good as it would get anyway.  His good days were pretty in and out.

Truth is, my dad had not recognized me for years.  He called me Barbara the last time he called me anything.  He mostly gave me a pleasant - "oh hello" if he greeted me at all, if he was awake, when I visited.  Visits were hard.  There was no conversation to speak of, he would mostly utter gibberish in between a sentence or two if I was lucky.  If he was awake.  This wasn't my dad- my intelligent, witty, annoying, cheerful dad.

This was some shell of a person that on the outside looked something like the man who used to be my dad.  But- this wasn't my dad.  Everything that was him seemed to be gone.  As a result, my visits became fewer and farther apart.  Hard to admit, but it was so damn hard to visit- and it just kept getting harder.  I struggled with this every. single. day.

That day at the book store, on a bus trip in NYC, when the phone rang, I already knew that it was going to be THAT phone call.  I had sensed the night before that it would happen, so I wasn't surprised when it came.  It didn't make it any easier.

"Your dad's condition has changed.  His breathing has changed and we think he may pass away this afternoon" was the message she gave me.  As I sank to the floor, I explained that I was in NY and would need to find a way home but that I would get there as quickly as I could.

My mind raced to think about the fastest way home and immediately I worked out what to do.  Make my way to Port Authority, hop the next commuter bus home and pray I make it in time.  My mom (obviously a saint) dropped everything to go and sit with him until I got there.  Not too many women would do that for their ex-husbands, but I appreciate her so much for what she did that day.  It gave me peace to know he wasn't alone until I got there.

The stars aligned and I only had to wait about 40 mins for a bus and I made it back in time after the two hour ride.

His breathing had certainly changed.  It was very apparent that he was in a different place than the last time I saw him.  It is so hard to see someone you care about suffer and I felt like he was suffering.

I stroked him and whispered to him.  After a while, I decided that maybe he would like to hear some music, so I played him some songs.  I queued up some songs on my phone and we shared my earbuds, one in my ear and I held the other to his ear.  I have no idea if he heard them but I have to think if he did, he would have loved Pentatonix's version of Hallelujah.  There were other songs as well, but that one is my favorite from that night.  It makes me cry.  It made me cry on the bus on the way there and it still makes me cry today- I suppose it always will.  I hope he found some peace in the music.

Most of the time I was with him, I just had the overwhelming urge to keep saying "I'm sorry".  I felt so sorry.  Sorry that I let him down in some way.  Sorry that I wasn't there for him.  Sorry that the people that kept coming in didn't seem to know who I was or felt that I wasn't there enough for him.  I felt like I wasn't enough to make this better even though I knew no one could.  There was nothing rational in the guilt I felt (feel) but it was (is) overwhelming.  It was compounded by listening to him breathe, or try to.

The palliative care wasn't cutting it yet.  His nurse was trying, but it wasn't enough.  He sounded like he was under water.  It was excruciating.  She gave him more medications.  More people came by as word got out that he would be leaving this world soon.  His aide of 7 years came by and chatted for quite a while- she had become family.

Finally, the medications and position changes gave him some relief.  Nothing would stop the process, but he was having an easier time of it.  This gave both of us the relief we needed.  About this time, my mom came back.  She didn't want me to be alone.

Gradually, his breathing became more shallow and the breaths came less frequently.  I watched for his breathing and pulse.

The end came quietly and peacefully.

I am glad he is no longer suffering, but the guilt and overwhelming sadness are still with me.  I am hoping they go away soon, or at least get better.

I know things will get better, time as they say....

A positive note-  I have the most amazing people in my life.  Those who sent cards, my aunt and uncle who sent the yummy Edible Arrangement and my amazing co-workers for the basket and card.  I am very fortunate to have such wonderful people to lift me up in such difficult times.  Most of all, my family who is dealing with me right now.  It isn't easy.  💗

Priorities

What a difficult time we are experiencing right now.

Politically, our country has been torn to shreds.  We have just come through the most divisive Presidential election that I have ever seen.  I hope we never see one like it again.

The election is over, but the controversy continues.  People are not accepting the results of the process as it was designed.  While I was not hoping for the result we got- I respect the process and I wish others would stop the turmoil.  I am not expecting everyone to suddenly feel like they need to spew rainbows and unicorns, but let's just wait for the guy to screw up before we hang him for the crime.  The negativity can't continue.

His words before he was elected and before he is inaugurated are just that- WORDS.  While words hurt, they are like a sales pitch.  All talk.  Let's see what his ACTIONS tell us.  We have absolutely no choice in the matter at this point.  The choice has been made.

When I titled this post "Priorities", it was very intentional.  Over the past few months, my priorities have needed to shift.

Ultimately, there are checks and balances in place to prevent one person from totally screwing with the country.  I have to maintain hope that the greater good will prevail and I need to let this one go.  I have much bigger issues to dwell on right now, this can't consume me.  

Financially, we are living very carefully because we are down to being a one income family.  We have reordered our financial priorities to only those things that are absolute necessities.  So much for ordering out several times a month!  Even the things that seemed necessary a few months ago are now questioned and considered before putting out the investment.

Psychologically, I am living very carefully because there are too many stressors in my life for me to direct my energies to all of them at once.  Taking one day- and sometimes one hour- at a time has become my priority for getting through the day.  I can't dwell on the big picture- it is too overwhelming, so I just look to the next thing I need to think about and get through that.

Physically, these first two things are robbing me of my rest and relaxation- which takes a toll on my physical being.  This one I need to work on.  Sleep is difficult.  Dreams are a problem.  Restful sleep seems to be a thing of the past.

Without going into specifics, there seems to have been a parade of Negatives NoOnes marching down the sidewalk towards my house lately and I am ready for them to bring some Positive Pollys along for a balance.

The hopeful person that always lives inside me knows that "this too will pass" and I am only presented with things that I can handle.  Nothing can break me!  I would really just like to jump to the end of this chapter of the story now, ok?

Don't worry, I am still the positive person I have always been.  Just a bit more tired and worn right now.  I'll be back shortly after this little exhaustion break.

See you soon.

Gizmo

Our dog is a Keeshond.  I will go  ahead and assume that most people reading this have no idea what a Keeshond is, it's ok- I understand.  

Keeshonden (the correct plural form of Keeshond) are a gentle, intelligent breed of dog that has been bred for companionship and as watchdogs- they are not a working or hunting breed.  

They are fluffy and furry and have a never ending smile.  They shed twice a year and a bit in between.  They have a long outer coat with a heavy, dense undercoat.  

Here are a couple of photos of our Gizmo:

Our boy is a bit camera shy, so getting photos of him is a challenge.  

Lately, he's been down a rough road.  

In late September 2015, he started to lose his ability to hold his urine through the night.  Then he started to vomit.  We knew this wasn't our boy. He never had these issues.  

A quick trip to our favorite vet was in order.  Not such a quick trip this time.  He would be staying for a little while.  He had pancreatitis and, it turned out- our sweet boy had diabetes.  We had no idea.
How does this happen?  Yes, he was a bit overweight.  But DIABETES?  What did we do- did we cause it?  Was this our fault?  The doctor assured us that it probably wasn't something we did.  Reducing his weight would be a good idea, but in his case probably was not a contributing factor.

He probably would have gotten there no matter whether he had been overweight and 'well-loved' or not.  It happens.

We learned how to care for a dog with insulin-dependent diabetes.  I insisted on home testing.  I wanted to be able to tell if he was in crisis.  (control freak much?  yes)

We settled in to a world of prescription foods, twice daily shots and occasional testing.  He was great.  Such a trooper through it all.  He stabilized quickly.  For a while.

Then his sugar got too high.  So we adjusted up.  And up.  And up.  wow, this is harder than it seems. 

I learned how to do a 'Curve' test at home.  For those of you who don't know, this is testing blood glucose levels every two hours over a 12 hour period like clockwork.  Mess it up and you're sunk.  No pressure.  But I did it!  (I was proud of myself, but not anxious to do those all the time)

He stabilized again.

Fast forward to Fall 2016

Now we have the issue of being too low.  Too low is worse than too high.  Well darn.  He is at 29, so I put corn syrup on his gums.  Test again in a little while.  Put more corn syrup on his gums and give him some food.  Still not much higher.  (now I am convinced he is seriously just messing with me).  Wait a bit longer, it comes up a hair more.

Now, if you aren't aware- blood glucose levels should between 100 and 250 or so.  Higher than 250 would be much less worrying than lower than 100 is.  Low blood glucose can cause more problems than high blood sugar over a short term.  Readings of 29 and 30 were very worrying.

By day 3 of low readings, he was acting very off. He was restless and his facial expression was one of distress.  He was asking us for help.  

I should also back up for a moment....at the time when he went low, we added a new health issue to his mix- Hypothyroidism.  His thyroid doesn't make enough of the hormone to balance his metabolism.  This has caused his beautiful fur to fall out in huge amounts.  His undercoat is basically gone in most places and his long overcoat is much thinner than it should be.  Probably not connected to his sugar imbalance, but worth mentioning.  

A couple of photos to show contrast in his coat from the 'before' photos above:

So back to our story.

Gizmo's sugar was low, not coming up and we took him to our vet.  They decided he was unstable enough to need to keep him so that they could try to stabilize his levels and get a handle on what was happening.  In addition to the low sugar, he was losing weight.  His new diet brought his weight down to a healthy range previously, but now he was losing weight that he shouldn't be.  He lost 3 lbs over the past two weeks.  He has now lost 10 lbs over the past year.  Combining the weight loss with the loss of fur, he looks and feels thin.  

We admitted him to the hospital at our vet for stabilization of his glucose and to run some tests.  They were able to get him stabilized over the course of the day and we brought him home that evening with instructions to test and call before each meal/insulin injection.  

He now has insulin tailored to the test each time he gets an injection.  I don't know if we will be able to learn how to tailor it ourselves or if we will need to call every day (what happens on the weekend?)

We are watching for ketoacidosis, where the body doesn't have enough insulin to control blood sugar and the body creates ketones as an emergency fuel source.  This causes the body's balance of electrolytes to be off (acidotic) and creates a life threatening situation.  

So, I am waiting for a call back from the vet to see how much insulin we give today. Also whether we need to catch urine and what the result of his T4 test was, which will tell us whether his thyroid meds need adjusting.

Just another day in the life of a dog mommy.

What are your experiences with a special needs animal?   Feel free to share stories in the comments below!

helpful links:

Keeshond Club of America

http://www.keeshond.org/

PetMD- Diabetes in Dogs

http://www.petmd.com/dog/conditions/endocrine/c_dg_diabetes_mellitus_wo_complication#

PetMD- Hypothyroidism in Dogs

http://www.petmd.com/dog/conditions/endocrine/c_dg_hypothyroidism

Welcome to 2016!

Well, here we are- we made it to another New Year.  Congratulations to all of us, right?

All in all, 2015 wasn't a bad year.

Most of the year went along as they do, work too much, relax too little, time passes far too quickly as it is known to do once you are over 40 (ok, 50...whatever!).

I learned a few lessons this year.

1. Stop trying to do so much all at once.  Multitasking doesn't help anyone, least of all me.  
2. Unplug.  There is something to be said for doing something that doesn't include a switch or require electricity.  I found my greatest relaxation without a screen.
3. Learn to say no/Learn not to jump in to take every task on.  This one is tough.  You see, I think I am Superwoman and can do everything for everyone.  Can't say this one was 100% successful...but I am working on it.
4. Love and appreciate the people who matter most.  I generally do this, but this lesson was thrust upon me with a very strong reminder at the end of 2015.  Let me explain....

December 11th 2015, I was awakened by a telephone call around 2:20 AM.  I saw the number was my parents' and knew it couldn't be good- they should be sleeping.  I didn't say "hello", I answered with "WHAT'S WRONG?"  Obviously something was wrong.  

I heard my mother's breathless voice on the other end of the phone "I think Herb's had a stroke, the ambulance is coming".  

This began a night/day that was more horrible and wonderful than I could ever have imagined even if someone tried to describe it to me.

For anyone who doesn't know me well enough, Herb is my step-dad.  He is a wonderful and caring man who looks like Santa Claus and is the love of my mother's life.  

He is also my father in most every way.  I do have a father, who I love, but make no mistake- Herb is my father as well.  I love him as if he were my biological dad.  He gave me a new family of sisters and a brother who I love as if we grew up together.  We are family in every way. 

Back to that day....

We essentially lost him that day.  His heart decided to forget how to beat on its own, suddenly and unexpectedly.  He didn't have a heart attack, it just stopped working.  If not for some very skilled paramedics and ER doctors- this post would be a very different one.  I am forever grateful to each of them.

The horror of the day was hearing the team trying to regain his heartbeat when it stopped in the ER.  We listened outside the curtain for 10 minutes as they worked to bring him back, with each minute feeling more sure it wouldn't happen.  But they did.  Angels were sitting on their shoulders that day.

The wonderful moments came later that day, when he came around and they took him off the ventilator- hearing his first words and knowing that he was still in there .  Seeing him move and hearing him speak were the most wonderfully unexpected moments- how could someone who had been down for 10 minutes be so intact?  Angels, I tell you.  

We call him our Christmas Miracle.  No better gift for Christmas this year.  

Hug those you love, keep them close.  Life changes in the blink of an eye.  

De-stressing....with color

Stress.  It is part of life.  We all have it, right?  I know I do.

Work, money, home, the news, it seems to come at us from all directions these days.

Through the years, I have used different methods to escape the stresses of the day.  I do crafts of all sorts, play games, read, watch tv- many of the same things other do.  Of course, they all get boring after a while and they all have the same problem when it comes to stress relief.  They let me think.  None of them keep my mind so busy that I can't think about whatever thing it is that has me stressing at that moment.

I needed to find something that would make me focus in a way none of these things had before.

As luck would have it, I also watch Youtube videos.  One of the Youtube channels I like to watch is Rainy Day Dreamers.  They do product reviews, often of toys or other 'As Seen on TV' items for families.  I love their videos and just enjoy the family.  (Plug for them- check them out here: https://www.youtube.com/user/RainyDayDreamers/featured)

Anyway, they did a review video of an adult coloring book.  They talked about how intricate the patterns were and how challenging it was.  I was intrigued.  I had heard about this in passing, but I started to do what I do best-  GOOGLE.

I found a whole world of adult coloring books I didn't even realize existed.  So, one day in Walmart, I found some cheap books.  I bought some.  I came home and colored my first page.  I was immediately hooked.  This was amazing.  It was like coloring as a child, but nothing like coloring as a child all at the same time!

I was focused on what page to choose, then where to start on the page, then what medium to use to color it in.  So many choices!  Markers, colored pencils, watercolors, actual crayons, if you could imagine!

That first page was liberating.  It may seem to you that coloring in someone else's artwork is not art at all, but I would argue that is not the case at all.  This gives a freedom to the colorist (there is a name for us, you know) in that we have a starting point.  We no longer need to put pen to paper to start the process, we can use a template and add our touch.  We are not interested in taking credit for that template- only in adding our colors.

When I color a page, I am lost in the process.  I don't think about how much money is in the bank, what the status of my project at work is or whether the doctor may call.  I think only about the next section I am coloring and how the pencil is laying down on the page.  I don't hear the world around me, I am absorbed in that work.

People don't understand this and I get that.  Most think it's silly, I don't mind.  It is not for everyone to understand.  I don't get NASCAR Racing, but I don't mind if others do.  I am sure people look at me funny as I am coloring on an airplane during a cross-country flight or in a waiting room.  I will color anywhere, and because this is a very portable hobby, I can and do.

I highly recommend anyone try this- even if you think it's silly.  Don't think you can't.  Don't think you won't be good at it.  The only one who needs to see your work is you and who cares what it looks like?  Just enjoy it.

Here are some of mine:

This took me hours to write....

I started and stopped this post over and over again in my head.  I want to write this, but I don't.

I wonder if this day will always be a difficult day.  I suppose it will.

Today is July 23rd, you see.

This is Jean-Christine's birthday.

I would like to be able to pick up the phone and call and say "Happy Birthday Jean!  Love You!"

But I can't.

I don't get to have that phone call with the somewhat plaintive, sing-song sounding "hi Sister-bee" that was the way Jean always seemed to start conversations.

I think of that "Hi Sister-bee" often.  I really miss it.

Wherever you are today Jean- looking on us- Sister-bee says Happy Birthday and I love you.

and I miss you.

My First Relay for Life

Hi All-

Today I had the honor of helping to represent the many cancer survivors at the 2015 Relay for Life of East Penn.  This was my first ever relay and I felt a bit out of my element.  I was unsure what to do or where to go.  Everyone was kind and pushed me along in the right direction (happy to tell me where to go!   )

As this year's honorary Survivor, it was my responsibility to introduce myself and tell my story.  Below is the text of my 'speech'.  I thought I would share it with all of you as well.  After some rest tonight, I plan to go back to the park to support my team- Team Atatud.  They are awesome and if you're in the neighborhood of Macungie Memorial Park, stop by.

I remember when the word cancer first entered my vocabulary.  Actually, I don’t think it was the word ‘cancer’ itself, but it was cancer.  I was a small child, probably five years old. 

My mother explained that we had to leave our home and go to help my grandparents.  My grandfather was sick and they needed my mom’s help.  As a result, we kids would go along with her and move in with my grandparents in their tiny little home. 

I don’t remember a lot of specifics about that illness, snatches mostly- he coughed into a tissue and it looked bad.  He was rushed to the hospital in the middle of the night- multiple times.  As kids, we were shielded from the scary details.

While I didn't have a name for it at the time, I later came to understand that my grandfather had contracted melanoma in his lungs. 

Those months were hardest on my mom I think.  She watched her father’s body deteriorate as it was ravaged by the cancer and the treatments, and once it reached his brain- it took his mind as well.  Looking back on the photos from those days back in 1967-1968, I see a woman who is hanging on by a thread, trying to make it through.

She did make it through as all good caregivers do.  She took care of her dad and also of her mom who was left behind when his time was done.  As their only child, it was all on her. 

My grandfather died in October of 1968

Flash forward 45 years. 

I have always been the woman who was diligent about women’s health.  Annual GYN exams, my mammograms were done almost on (or actually on) the same day each year.  I rarely missed my screenings and if I was late, it grated on me with an almost physical feeling- I was compelled to stay on top of those things.  

October 9^th, 2013, I had my annual mammogram.  Normally, these things were followed by a phone call saying “we need an ultrasound” because they see a cyst or something.  Not this time- It went like clockwork.  Normal!  Awesome!

November 8^th 2013, while taking a shower, I noticed I was bleeding from my nipple (TMI, I know, sorry- important info for anyone who should pay attention to these things).  I immediately called my breast surgeon who got me an appointment for the following Monday.  A quick Google search told me pretty much everything the surgeon would later confirm.  This is never a great sign.

While my mammogram only a month earlier had been normal, I actually had breast cancer.  Initial diagnosis was stage zero ductal carcinoma in situ. 

Even though this was a very aggressive treatment decision- I opted for mastectomy.   It would save me radiation therapy and I had much history of issues with cysts and such and I felt it was the best option for me.  A personal decision each woman needs to make, this one was mine.  I wanted to be done with this for good.

A couple of weeks after surgery, I had arranged a consultation with an oncologist to go over my pathology, just to have him review everything to be sure we had thought of everything.  My mom drove me to the consult since I wasn’t yet allowed to drive.  The oncologist, a warm, wonderful man who I have actually seen as a hematologist in the past, reviewed the chart with us.  He went through the pathology in detail and walked the decision trees that the oncologists use themselves to determine the most appropriate treatments.  He explained tumor grades and hormone receptor status.  I understood immediately what he was saying and before he even got there my mind said   I didn’t want him to be telling me that my cancer was worse than thought, and that I needed chemo, with my mom in the room. 

You see, my mom worries about everything where I am concerned.  She got lightheaded if I bumped my head.  How could she possibly hear that I needed chemo? 

I glanced over at her (she looked very scared) and said “it will be ok” She said “I know”

In that moment we became each other’s caregiver.  While the cancer patient has it rough- cancer sucks, chemo is awful and while I haven’t had to do it myself, I know radiation is as well.  Going through it yourself is one thing - watching the person you love suffer and being completely and utterly powerless to take that suffering away- that is truly terrible.  Caregivers are true heroes and their role can’t be overstated.

I had a lot of caregivers- I mentioned my mom, but I had my whole family- My husband who cooked dinners regularly, my kids who worried and drove me and took time to sit with me at chemo.  My step-dad who just wanted to do anything. My co-workers who picked up the slack at work when I couldn’t.  All my friends and loved ones who sent cards, gifts, called, visited or just posted supportive comments on Facebook. 

All of that supported me and got me through.  My role was just to get better.  I didn’t have a choice but to keep going.  Each of those people who took time to do something to be a caregiver had a choice.  They chose to support me, I can’t possibly thank them enough for making the choice to give me their time and support.  It made all the difference in the world.  They were like my own personal army in the fight I was making against this invisible foe.

My mom was the first cancer caregiver I ever knew.  I never knew that she would need do that for me.  I wish she never had to see another loved one with cancer, but I am very glad I had her by my side.  Her and the rest of my caregiver ‘army’

Please remember to thank all the caregivers.  They are my heroes. 

A Year, An Honor and a Privilege

I have officially reached one year.  The magical one year mark since I completed my chemotherapy.  One year ago today, I was sitting in that big, pink recliner for the last time.  Mugging it up for my daughter's camera.

I expected to look forward to this date.  Honestly, it almost slipped by unnoticed.  I realized it only because I  have been asked to serve as the Honorary Survivor Chair to the East Penn Relay for Life. 

The Relay for Life position is an honor and I feel incredibly privileged to be asked to represent the survivors at this year's event.  

While I have known people who participated in relays, I have to admit that this is the first time I will actually be involved in a relay myself.  I will be learning as I go, but I will do my best to keep up and be where I need to be and not make a fool out of myself or the wonderful person who recommended me.

If you are not familiar with these events, Relay for Life describes themselves in this way (from http://relay.acsevents.org/site/PageServer?pagename=Relay_learn):

At Relay For Life events, communities across the globe come together to honor cancer survivors, remember loved ones lost, and fight back against a disease that has already taken too much. The funds you raise truly make a difference in the fight against cancer just ask one of the nearly 14 million cancer survivors who will celebrate another birthday this year!
Relay For Life teams camp out overnight and take turns walking or running around a track or path at a local high school, park, or fairground. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times.

The first event I attended was last evening.  It was a Survivor Soup Dinner.  I had no idea what to expect, but I had a blast.  While learning about the plans the organization was making for various fundraisers, the great work already taking place to raise money and all the planning for the big event in May was wonderful, the focus of the evening was on the survivors.  

I was one of a number of survivors who were honored during this dinner as we each rose and shared our stories.  Listening to the journey each of these wonderful souls has traveled was nothing short of inspiring.  Some journeys have been longer, some are closer to the beginning of the trip, but we all share a common bond- that big "C" word- Cancer.  

The other overwhelming feeling I had sharing dinner with my new journey mates was Hope.  I know this sounds like a cliche, but it was very much present in that room last night.  There was no 'woe is me' 'I have/had cancer'.  It was much more a feeling of 'This is what happened and I overcame it'

We are strong and nothing is going to keep us down!  

There was also a strong feeling of community around those who need uplifting.  This is a tough community to be a part of, prayers are needed for those who are struggling or have reached the end of their journey as well as those who are left behind.  It is always hardest on the loved ones- they need it most.  The group is right there for them as well.

It was an inspirational evening.  I am grateful to have been part of it.  Thank you to Michele for including me.  

After I got home, I was inspired to do a little art project on the theme.  I had a Munny doll to decorate, so I thought I would do a Relay for Life theme.  The front is the national theme, the back is the one I found on the East Penn page.  She is all decked out in her chemo cap to represent anyone who is or has been going through chemo (crocheted, of course LOL).

I am no artist, but I thought it was kinda cute, so I would share.  

If you would like more information about the Relay for Life, check out my page, the details of our event are available from the page.
http://main.acsevents.org/site/TR?fr_id=66375&pg=personal&px=39090181

Hi- Remember me?

I am still here.  Living.  As it should be.

Those are such wonderful words.

The journey of cancer makes saying those words very special, even if you don't want to admit that to yourself, and never to others.  I am one of those people.  I would never admit that anything else would come of this journey than "I am here. Living. As it should be"

My outlook was one of indignant .... I wouldn't call it denial, I never denied the disease or it's process.  Perhaps a place of considering myself the supreme overlord over this situation and nothing else will win.  Delusional? Perhaps.  Whatever works, I guess.  Laugh if you must, it gets me through the tough times.  ;-) 

So, am I winning?  It would certainly seem so.  Checkups are going well so far.  Next oncologist appointment is in April, so we'll see what he has to say.  Not expecting anything to worry about.

The biggest struggle has been rebuilding the house, so to speak.  These girls have not been overly cooperative.  I will spare you the ugly details, but suffice it to say that I think we may have something workable now.  The first step in tattooing was done in December.

 For anyone reading who doesn't understand, that is the coloring of the nipples to make them appear as natural as possible.  My natural nipples were removed during the mastectomy procedure.  Some people are able to do a nipple saving procedure, but as I may have mentioned before- since my cancer was in the ducts that was not an option for me.

Part of my reconstructive journey has been to rebuild not only the breasts, but also to create the illusion of nipples.  You can't replace real nipples.  The tissue that is taken is unique in its function.  It is possible to make pretty good looking replications however.

This is truly art.  In my case, it started with the plastic surgeon.  Once he had the canvas of the breasts of a size and shape we wanted to work with, he asked about what type of nipple reconstruction I wanted.  The choices are:

None-
This is where your breast is a blank slate.  No nipple.  Makes going braless super easy.  But, not such a natural look.

Tattoos only-
This is where the look of nipples are tattooed on the reconstructed breast.  While the tattoos are amazingly detailed and shaded- there is no real dimension.  With the talented hand of a skilled tattoo artist, the illusion of dimension is added through shading.  Again- the no bra thing is a snap since there is no raised tissue.

Nipple tuck alone-
This is where the plastic surgeon uses skin and sutures to create a very realistic looking nipple.  This procedure alone does not create any coloring of the areola or nipple, but it does create a nipple-looking skin structure.

Nipple tuck/tattooing-
This is the combination of the last two techniques and creates the most visually realistic nipple.  It will not only have the coloring of a natural nipple, but also be dimensional.  This is the option I chose.  My fear- the proverbial 'headlights are always on'.  I was afraid of how noticeable this would be. AND- I have never had a tattoo.  Oddly enough, I was afraid of how much it would hurt.  Everything I have been through and this one made me nervous....crazy.

The actual nipple tuck (by the way, that's my word...not sure what they really call it) was done as part of another reconstruction procedure to tweak the breasts.  They look kind of strange in the beginning and then the look of them kind of 'melts' down as they heal until they look very natural.  It's pretty fascinating stuff really.

My last reconstructive surgery was in October.  I had to let the scars heal a bit before we could think about the tattoos.  At my last follow up, it was decided that December would be the perfect time frame to get on the tattoo calendar.

December 19th.  One year and one day after my double mastectomies was the day.  I went to the plastic surgeon's office and met with the awesome tattoo artist.  She asked me some questions, sketched the placement of the nipples, applied numbing cream and, after it took effect, got to work.  It was amazingly fast.  The whole process took less than an hour, including all the prep work.

It was a bit painful, but in the greater scheme of things, it was far from the greatest pain I have felt.

Healing was quick.  I was careful to keep the ointment that was recommended up until the peeling was done.

They looked like natural nipples almost immediately.

I will go back in March for some additional shading and maybe some work on my scars.  I have scars that run horizontally about 8 or so inches across each breast.  They are red and angry looking and she feels she can camouflage them a bit.

I am so impressed by the process.  It almost makes you forget.  Almost.

November 8, 2013

November 8, 2013.

A day I will never forget. I was taking a shower like any other day. A drop of blood changed my life forever.

So many things have happened since then, it seems like a different life altogether. What has happened?

Well, a year has passed. What does that mean? As a wonderful song from the Broadway show "Rent" puts it - Five hundred twenty five thousand six hundred minutes. How do you measure a year in the life?

I had two mastectomies, three reconstructive surgeries, chemotherapy, lost my hair and some nails along with a bunch of other inconveniences. None of that was easy, no sugar coating that, but hey- it could have been much harder. I feel blessed that it wasn't.

All of these things are minor in the greater scheme of things. I went from having cancer to being cancer free. There are no better words in the English language than "Cancer Free" when you have cancer.

So, how do I feel about it?  Let's look at this from the perspective of the year as a learning experience.  I love to learn things.

What have I learned in the past year:

• Thoughts like "Woe is me" and "Why me" have no point, waste time and energy.
• Family and friends really do lift you up and give you the ability to get through anything.
• I missed my work when I didn't have it in my daily life.  No matter how much I say I wouldn't do it if I were independently wealthy, I now appreciate how much I enjoy what I do for a living more than ever.
• Sometimes it takes a horrible course of events to get you to something you really wanted all along.  I wanted a breast reduction after all.  It just took me a major diagnosis make it happen.  That was definitely a bonus.  
• I hated making my family worry more than any other experience I had this past year.  I pray I never have to do that to them again.
• I am stronger than I ever imagined.
• I love the new me.  Scars, imperfect, whatever- it is all me and I earned it.

Fast forward to November 8, 2014

I spent this day in a much different way than I did the day a year ago.  

Last year I spent the day worrying about what I very quickly realized would turn out to be a new cancer diagnosis.

This year was a blast.  I spent the day with two of my children in New York City- one of our very favorite past times.  Just hanging out in the city for the day.  

What a difference a year makes.  

HIPAA privacy at what cost

HIPAA privacy has given us peace of mind where our personal information is concerned,  or at least - that is the theory.  

From a patient's perspective,  the first effect we saw from this complex law was a change in patient intake at the doctors office.   This was followed by more paperwork - both out of fear of non - compliance with this rule.  

That is something we have all dealt with for years now.  I would wager that few of us read any of the many privacy forms we sign every year... We sign them and move on.

This has morphed into something that I don't think the law makers ever intended - privacy at the cost of the patient comfort and peace of mind.

I am sitting in the outpatient surgical area of a hospital waiting to be taken back for my next surgical step in my reconstructive journey.   The first thing I was told when I arrived was  "no visitors".

I have been here before,  why no visitors?  Family gives me peace and comfort,  not to mention helps with the inevitable boredom that comes with two hours of waiting. 

HIPAA privacy.  

Because of HIPAA privacy,  patients are no longer allows to have visitors at their side.

This unit has beds that are only separated by curtains,  so personal information has been overheard by families for years and this had to stop.

With that need for assumed privacy - by the way,  I can hear everything but I guess that my ears don't count- here I sit,  all alone,  waiting. 

I don't think this is what they meant.

Nine Months

A lot can happen in nine months.

A lot DOES happen in nine months.

Babies are conceived and born in that time. A beautiful thing I have been lucky enough to experience 3 times- the loves of my life.

A school year begins and ends in about that amount of time.

Three seasons of the year pass by- all beautiful in their own right.

It has been nine months since my left nipple started to bleed and my life was changed forever. So much has happened in that time.

Wow, "My life has changed forever" is a very big statement. I would like that not to be true, but it is. As much as I try to push the word "CANCER" down it creeps back into my life. I am cancer-free. Why does it keep creeping back into my daily life?

Once you go on this journey, you can't hide from it- it will always be there. You will think about it every day. From looking at your appointment book, whether it is planning the next appointment or simply seeing all the ones that passed, to looking down at your scarred body- it will always be there to remind you.

I was recently on vacation in beautiful Myrtle Beach, SC. The "before me" would have wandered out to the beach and plopped down on the chair, reading my book all day in the sun. Sunburn would have been inevitable, as would the pain that followed. It was part of visiting the beach. The "after me" made sure I had an umbrella to block the sun, SPF 50 sunblock that I slathered on every exposed area of skin (and those scars, which were not exposed but just in case) religiously and there was NO sunburn. I hid in the shady area beneath the umbrella unless I was in the water. I already had one kind of cancer- I don't want another! Silly? Maybe, but why take chances?

Don't get me wrong, I had a great, relaxing time on the beach- but I was much more careful than I would have been "before".

So, where am I today in my journey you may ask? Or not- I will tell you anyway ;-)

My hair has grown back in nicely and SO curly. I am keeping it short. The general consensus is that I look best with short hair, so I will keep it. Much more gray than before, but that was easily remedied (thanks to my awesome stylist, Courtney!) Kinda makes me wonder how terrible I looked with the long hair, but whatever. grin.

My nails are almost completely back to normal. The exception is my toenails- a bit slower to grow out, but nothing horrible.


OVERSHARING ALERT- STOP READING IF YOU DON'T WANNA KNOW!



My breasts.... hmmm.... well, they are still a work in progress.

The right side isn't bad, but needs a bit of tweaking to remove some redundant skin. This kind of gives it a boxy look on the lower half.

The left side is a bigger issue. It has the same boxy problem as the right, but also is flat- like I am leaning against something but I am not. This is the result of scar tissue in the capsule that holds the implant. The fix for this is to cut out the old capsule, which is essentially all scar tissue and allow it to create a new pocket for the implant. Basically, redo it.

The hope is that the two of them will wind up looking essentially the same once we are done. My scars will become even longer than the 6+" that they are each now, which obviously isn't ideal, but it needs to be done for a better result.

My goal is to be able to look down, or in the mirror and feel like I am looking at natural breasts. That is not what I see right now. My doctor agrees.

I should point out that this is in no way a statement on my doctor's abilities. I was a very tough case having gone from such a large size before to a much smaller size now. The first surgeon had to do very large horizontal incisions which has made this a rough road for all of us. The plastic surgeon is wonderful and is letting me drive this, when I am happy, we are done.

The next step in my journey is scheduled for October 7th.

Still here!

It has been a long time,  hasn't it? 

I suppose that's a good sign- less to talk about must mean life is getting more normal.   Never a bad thing. 

So- quick health updates-

First,  I had an MRI to follow up on the enlarged spleen  and liver cysts that were seen on earlier studies.   Good news!  Spleen is back to normal.  Liver is still cyst-y (yes, I make up my own words)  but no malignancy.  Also good news!  We will do a CT scan in December to look at the liver again. 

Next,  reconstruction is ongoing.  I have had the next step in the process,  which was another surgery to remove more excess skin and to construct nipples.   Some people decide just to tattoo nipple coloring without the reconstruction,  but I opted to go with a more natural look by doing both.

This was a pretty easy surgery over all,  but I did wind up with an infection in the incision on the left side.  That pesky left side-always causing problems!  It is getting better now and should not create any lasting effects.

Assuming the healing goes well,  the next step should be tattoos to create the coloring.  There is an awesome video online showing a tattoo artist doing this for a cancer patient.  It is really quite amazing.

In the category of getting back to normal,  I made my first business trip is since all this began.  I traveled to a conference in New Orleans and I have to say,  it was great to see everyone and feel normal again.  I missed the normalcy.

Lastly... My hair,  oh my hair.   I know many women  are horrified at the thought of losing their hair for any reason,  including as a result of chemo treatments.   I never felt that way.  It's just hair,  it grows back.   I have to say though that this part of my journey has been about the most enlightening of all.

My husband thinks my super-short hair is sexy. In 32 years of marriage he never told me I was sexy in the same way before.  He always said he likes longer hair.   Who knew?  Not him!

Also- total strangers come up to me to tell me they like my hair.   It is a strange experience to walk into the pizza place or a doctor's office and have someone you don't know tell you they love your hair.   Both have happened and it is always disconcerting.   I am grateful for the compliments,  but wow!

More to come as my journey continues.

Just when you thought it was safe....but at least it isn't the cancer!

Ok, I will admit I titled this post just in a way to make sure people don't panic.

I didn't want to make people think the cancer was back. No reason to think I am anything but cancer-free. Woo Hoo!

With that said, I am still working on being chemo-free. The side effects from the chemo, that is.

In the past few weeks, I have seen about half of my eyelashes and eyebrows fall out. That was more annoying than anything- they keep getting in my eyes. Irritating during allergy season- can't tell what is "allergy-eye" versus what is bona fide "something-in-my-eye". Also not going to try mascara any time soon, that would be both difficult and probably would look very uneven anyway.

Another fun development.... The one side effect I was working hard to avoid seems to have crept up on me.

My nails.

{sad trombone}

I have lost one toenail so far and a few fingernails are lifting from the nail beds. This makes be incredibly sad (hence the sad trombone) and for some reason is just one I didn't want to have to deal with. I suppose we all have our thing, this one is mine. I do have to say, I thought it would hurt a lot more. My fingers are getting sore, but not as much as I thought they would. Time will tell how far they will go- will I lose the whole nail or will they sort of hang on? Will they all pull away?

This is sounding too much like one of those old serial stories- or the original Batman tv show.

Tune in next time for more updates! Same Bat place, Same Bat Channel!

I may be typing with my nose. ;-)

Returning to "Normal"

What is normal, really? Who knows? I don't. But I am working toward finding it again.

I have returned to work full-time. Who knew that those words would feel so good? I missed the routine of work, the challenges, the need for thinking and most of all, my work family. I really missed them during my three and a half months away.

Stamina was horrible in the beginning. Climbing the stairs to my office was more than an effort. Now, it is so much better and I don't even think about it most of the time. By the end of the day, I am exhausted and this week has been particularly tiring working the longer hours, but it is a good tired. I am thankful for it.

We all too frequently talk about our jobs with disdain and wish we could be independently wealthy and not need to work (I am a top offender in this area!). Once I was not able to work, I missed it terribly. I don't want to go there again.

Another area I am working toward achieving normalcy is in my body.

My head is starting to get fuzzy with its new hair growth. I welcome the hair back, although I didn't miss it as much as you would think. I will be glad when there is enough to keep it warm and I won't need to pop a cap on there when it gets cold. I am over these caps. On to other body parts.....

(TMI ALERT TMI ALERT!)

I had the next surgery in my journey of breast reconstruction. This was the one I was looking forward to the most, I think.

During the double mastectomy, tissue expanders were placed and partially expanded. Once my chemotherapy regimen was completed, the expansion process continued until the breasts reached the size I desired. We chose a size that would be much more appropriate for my frame and size than I had been given by nature, which is a great thing as I had always struggled with shoulder, neck and back pain due to the size.

The problem with tissue expanders is that they are 'one size fits most' or in my case 'one size doesn't fit you'. My experience with them is that they are very uncomfortable. They poke the muscles, migrate where they don't belong and are just not a pleasant experience. I was really happy to get rid of them.

The surgery I had just over two weeks ago was removal of the tissue expanders and placement of my permanent silicon implants along with removal of extra tissue and revision of the original scars. This was a much easier surgery than the mastectomies. The one thing I ran into was a problem in that I did feel ok some of the time, so I found myself trying to do things I shouldn't- driving too soon, doing things around the house, etc. My body was quick to let me know it wasn't good to do these things. Also, the left side is much more sore than the right. My scars are large, much larger than I anticipated they would be going into this, each one is around 6 inches in length. I know they will heal and look great eventually but that will take some work and a lot of time.

I am not one to worry about how things look at such a level, but I can see how some women would be horrified by their bodies after these surgeries. I have had the word 'disfigured' pop into my head on more than one occasion. I shove it right back out because I am not a finished product, but a work in progress.

I can't wait to see how this artwork turns out!

I am so much stronger than this....

"I am so much stronger than this"

Those were the words I found myself typing to my boss one day two weeks ago. Tears streamed down my face as I typed the words that summed up all the feelings I could feel that week. All of the feelings I could feel all year.

I had reached the lowest of low points in my cancer journey.

My last chemo infusion was on the 10th of March. I was expecting to be feeling so much better at that point. Unfortunately, on St Patrick's Day, my body had other ideas. At the worst possible time, I found myself with what turned out to be a simple stomach virus. I will spare you the horrible details, but suffice it to say that in the course of 7 hours, I lost 4 pounds and became severely dehydrated.

I had been scheduled for blood work that day at the oncologist, so I went and hoped I could talk to them about some relief. I was REALLY sick.

The oncologist recommended that I be admitted to the hospital, but I asked if we could avoid that- I didn't want to go in the hospital. They agreed to give me some treatment in their office infusion center to see how I did with that as an alternative. I was relieved.

I spent 6 hrs in the peaceful oncologists office while they did labs, gave me lots of fluids and medications via IV. That helped the nausea and the dehydration. Once my color was better and they were confident I was doing better, they sent me home for the night with the agreement I would be back the next day for labs. We kept the IV in place just in case I needed more treatment the next day.

The following morning, my labs were within range. I had kept some food down so I was able to avoid more fluids and treatment.

Unfortunately, I had a reaction to the adhesive on the plastic bandage covering they use to cover the IV. While I have reacted to adhesives on rare occasions in the past, it has been years (since 1992) and I have had many IVs with the same type of covering with no problem in the interim. No idea why it did it now- but it resulted in a large burn on the back of my hand. Oh well, just one more thing.

I had hoped to return to work half days on the 24th of March, which brings us to that note I was typing to my boss. I had to send her a note letting her know that I would not be strong enough to consider returning to work that Monday. I felt so defeated. For the first time, I felt that illness had gotten the best of me. I was down, beaten.

Once I typed those words, cried those tears, I started to feel that defeat leaving. I just needed to be defeated for a little while. I needed to let it get me down so I could start to get back up. I know this sounds silly, but that is exactly how it felt. Once I said those words and admitted that's how I felt, I no longer felt that way.

Within a short time, I let those feelings fade away and just waited for my strength to return. Each day that went by once I could eat a little more, I got a bit stronger. By the following Monday, I was a whole new person- almost back to myself.

That Monday, I spoke to the doctor and got approval to begin working on the 31st. Just half days, but it is a start. Sitting at my desk is a sense of normalcy I haven't felt since mid-December.

I missed it terribly. I am glad to be back!

The New Normal

Cycle three of Chemo has come and gone.

I can't say it hasn't been without it's ups and downs.

Upside-

Less nausea.

Downside-

Yikes, we have had some downsides this time.

It all started with the fever I developed. Not that it was a big fever. It lasted all of a day and wasn't even very high. Let me tell you- that little fever got itself some attention though. Doctors don't like fevers when you are on chemo.

The fever spiked at a high of 101.4 at (of course!) around 4pm the Thursday after my Monday chemo. The covering oncologist felt it would be best if I headed to the Emergency Room rather than wait for the next day, in case there was an infection working in my system. They sent me off to the largest emergency room in our area.

As luck would have it- every one else in this area decided to visit this particular ER on the same evening as I did...or so it seemed. The wait times were excruciating. We eventually were taken back to an examination room where blood and urine samples were obtained for testing. Chest X-Ray was taken. I was eventually taken for a CT scan with contrast. My oncologist was pulling the imaginary strings and directing the orchestra from afar, ordering each test and directing each step.

At the end of a 10 1/2 hour Odyssey, each blood test was negative for infection, there was no sign of pneumonia and they had no idea why I had a fever. Cultures would take a few days, but we had to wait that out. My blood pressure was low (96/47) and pulse was high (~112) for which they gave me some IV fluids.

OH and by the way, we see some nodules on your lung and liver on the CT scan. No need to assume it's a spread of your cancer, but talk to your oncologist about it. WHAT?!!? uh... no, of course I won't worry...why would I WORRY? sigh....

I did not bother calling the oncologist on Friday, figuring he wouldn't have the report by then and I had blood work scheduled for the following Monday. I planned to see if he could make time for me that day.

The fever left on its own Friday morning as mysteriously as it had appeared.

Sunday afternoon, the hospital called to say the urine culture came back positive for two separate bacteria (ewww...) so they would call in an antibiotic. COOL! Mystery solved!

Monday morning came and I headed to the oncology office for my normal bloodwork. While there, I mentioned my ER visit and asked about the blood cultures and mentioned the CT scan. They asked me to wait while they pulled up the results.

Can I just mention that my oncologist is the best doctor EVER? His staff is responsive and he is warm, caring and never makes me feel like I am imposing or asking a stupid question. That is so important when you are facing a major illness. This was no exception.

They pulled up all my results, he made a spot in his schedule *that did not exist* and went over each and every test that was run- and there were many. He review the CT scan in detail, since that was the test of greatest concern. He even took me in his office and showed me every image on his computer so I could see what they were seeing.

It turned out there was more than the ER doctor told me. There were spots on my lung, liver and spleen as well as a thickening of my esophagus. To break them down:

The lung spots were calcified, so not of concern, likely remnants of previous pneumonia.

The thickening of the esophagus is likely due to the chemo itself. Apparently this happens.

The spots on the liver and spleen were considered 'hypodense'. These types of spots can be many different things, from a spread of the cancer to malformed blood vessels. There was no way to differentiate on the CT scan. Further studies would be needed.

Logical next step would be an MRI, but I am not allowed to have an MRI due to the tissue expanders I have in place. On to a PET scan. According to the doctor, this is a more accurate and clear test for their purposes anyway.

The test was scheduled for Thursday to give them two days to handled the precertification.

I received a call saying it wouldn't be covered by insurance, but that was quickly corrected by reminding the precert area why I can't have an MRI. The test was on!

The PET scan itself was pretty easy.

They inject a radioactive sugar via IV and ask you to wait about 45 minutes for your body to process the sugar. Apparently cancer cells process sugar at a different rate than non-cancerous cells do, which is what allows the scan to see them.

After 45 minutes, it is really very similar to a CT scan, although in my case it was a CT scan of everything between my chin and my thighs, so it takes a bit longer than the average CT.

Once that is done, they send you on your way with strict warnings to avoid small children and pregnant women for 4-6 hours. In my case, I am also avoiding small animals since they think my lap is the best place to sleep. I am radioactive. LOL


Now for the biggest upside of all!

Amazingly enough, my oncologist office has already called with the results. No Metastatic Disease! PHEW!!!!!

I have to admit. Through all of this, this is the first time I have truly been afraid. I am glad this one is over.

What did I learn from this?

Scans are scary. Scans will be scary. They will continue to be scary for a long time I think.

Also-

This is my new normal.

Time to get used to it.

This is going to be a long one.

So much has happened.

Where to start? At the beginning, I suppose.

October 9th.

Like clockwork, every year, I go for my routine mammogram. Generally these things are eventful for me. I get the phone call saying "We need you to come in for more studies". Then, off for the repeat mammogram on that side and inevitable ultrasound. Sometimes that is followed by a trip to visit my favorite breast surgeon (yes, I have had a breast surgeon for years now- he's great)

Not this year- for once, this mammogram came with the form letter. Your mammogram is 'Normal'. I thought "WOW!", that never happens. I expected them to find something, they always do. Never anything to worry about, but they always find something. Something to scan, press, poke with needles or cut out. Not this time. Cool. That feeling lasted just short of a month.

Fast forward to Friday, November 8th.

While taking a shower, I noticed a streak of blood on my arm. Upon investigation, I found it was coming from my left nipple. My first thought was "Well, this is new" and then "Did I scratch myself and not remember it?" no- you would definitely remember scratching yourself there.

More investigation located a lump just above and to the center from the nipple. OK, definitely not good. My first instinct was to call the breast surgeon. Appointment was set for the following Monday, November 11th. My second instinct was to start doing research. Within minutes I had a probable answer and it was pretty scary. There are lots of types of nipple discharge and reasons why they may happen. Blood is one you really don't want to see. At this point I am sure I need a biopsy to confirm the diagnosis.

Monday, November 11th

My breast surgeon took a look and did an ultrasound. His demeanor told me that he didn't like what he was seeing. We scheduled a biopsy for the following week.

Monday, November 18th

I returned to the breast surgeon for a ultrasound-assisted Core Biopsy. He also placed a small titanium marker so that the later surgery could easily identify the site. We knew that we would be removing whatever this was, just not the extent of the surgery that would be performed.

At this point, I left the doctor's office and drove from my home in PA to a conference in MD for the week. That conference was a blessing in that it kept me occupied for the week. I knew that the results would take a few days, but hearing from him sooner would mean bad news. I expected a call.

Wednesday, November 20th

My surgeon left a message on my home phone. I wasn't there to get it. (before you ask, yes there are others who live here, no- they don't check the phone)

Thursday, November 21st

I returned from my conference and checked messages. When the surgeon leaves his cell phone number on your voice mail you know he wants to hear from you.

My palms were a bit sweaty as I dialed his number. He picked up on the second ring. He sounded apologetic but simply said that they found cancer in the biopsy. Stage Zero Ductal Carcinoma in Situ. He assured me I would be ok and that he was moving my appointment scheduled for the following Monday to an earlier time so we would have plenty of time to talk.

I was in the bedroom when I spoke with him, so no one knew but me. The news was exactly what I suspected. It was no surprise to me, but now I needed to tell my family. I had to tell my husband, my grown children, my mother. That was the hardest part. That is definitely the hardest part of all of this.

I gave them what information I had and did what the doctor did for me- I assured them I would be ok. I also told them that I got the wimpiest cancer there was- seriously.... it was barely even considered cancer- don't worry! I don't think that worked. I tried.

Monday, November 28th

My mother went with me to consult with the breast surgeon on my options. I had already made up my mind on what I wanted to do. I had made that decision years ago. Like many women, I had decided that "if there is ever anything" my breasts will go. I wasn't so sure the doctor would agree with me though, and that made me nervous. I was dedicated to that conviction. I hated my breasts before, I certainly didn't want them now.

Let me explain that last sentiment. I am a small person, only five feet tall but have always had large breasts- too large. I had decided in the past year that I was finally going to do something to remedy that situation after my mammogram. I was tired of the stiff neck, sore shoulders and inability to buy clothing that went with them.

Anyway, back to the consultation. We talked about the biopsy results. What the various options were and I had options. I could do a lumpectomy with radiation, a single mastectomy or a double mastectomy. Because it appeared to be a non-invasive cancer, I should not need any chemotherapy.

I told him I wanted both breasts gone and that there was no question in my mind. He immediately agreed. In fact, both my mother and I felt he may have been steering away from the lumpectomy although he never said that outright. That was more a feeling than anything.

I did ask if we could do immediate reconstruction, as I was hoping to reduce the number of procedures. He felt that should be an option and gave me the name of an excellent plastic surgeon.

My only requirement was that this needed to happen by the end of the year since my deductible was met. I am nothing if not practical. My deductible is not the highest, but it isn't a low one either. That mattered to me.

He assured me again- I would be ok. I believed him. I still do.

Thus began an odyssey of doctors, tests and clearances for surgery. I won't list them all, but wow, it kept me busy. In the midst of it all, I learned the importance of being your own health advocate. That is a topic for a different blog.

Let's skip forward in time to Mid-December.

By now, I have met with my most wonderful plastic surgeon who came up with an immediate reconstruction plan. By the way- immediate reconstruction isn't really immediate...but it isn't bad. More on that later.

I also consulted with a hematologist who cleared me for surgery, since I have a bleeding tendency. I passed all pre-admission testing and prepared for sentinel lymph node biopsy by having radioactive material injected into the cancerous breast. The second part of that process is injecting blue dye the morning of surgery.

Sentinel lymph node biopsy is important because it allows the surgeon to map the lymphatic process so they only need to take the first lymph node rather than the older method where they took 10-15 nodes to biopsy at the time of mastectomy. This way they can take one, send it off for a quick look and stop unless they see a problem.

Wednesday, December 18th

The day of my double mastectomies. It was such a relief for this day to come, even though only 40 days had passed from that fateful shower until this surgery to remove my breasts. It felt like it was at once an eternity and yet like it passed in the blink of an eye.

I had a crowd of people with me that day, worrying about me. Again, this was far worse on them than it was on me. My family loves me and I love them and I would never dream of putting them through this if I had a choice. I appreciate them for their worry and their love.

Just before I went into surgery, my breast surgeon came to see me and asked if I had any questions. I had one. I asked him what he thought the chances were that I would come out of the surgery as a Stage Zero Ductal Carcinoma in Situ. He said he was sure. I wasn't.

I went home from the hospital the next day, sore but happy to be going home.

Recovery was interesting.

I will say that it didn't feel like I expected. I won't say it didn't hurt, but I think I expected more pain, considering how much they did.

The drains were....unpleasant. I had two and, if you aren't familiar with them, they are little bulbs that attach to these tubes implanted in the incision sites. The bulbs are squeezed and capped to create suction, which pulls fluid out of the wound. They require emptying twice a day, which basically means you uncap them and squeeze the fluid out into a cup and measure it, then flush it down the toilet. Squeeze the bulb, cap it and you are good for another 12 hours.

My incisions are larger than normal due to the size of what they had to remove (they were big boobs... LOL), so that proved to be a challenge for the plastic surgeon. He wound up having to cinch the incisions like a purse with a string. This will require some revision later, but won't be a big deal later he tells me. I trust him.

I have tissue expanders in place to allow later expansion and eventually, placement of implants. Since there was a bunch of skin left over, they were about half expanded during the initial surgery. These expanders are uncomfortable. The edges are squared, they are not sized to the patient and they dig into the muscle around the edges. Oh well, I was told I should be able to swap them out at the three month mark post mastectomy.


Christmas came and went, it was tiring but good. Kind of a blur really, but I was happy the surgery was behind me.

Tuesday, December 31

I had scheduled an appointment with my hematologist to review the final pathology results. I was happy to have this appointment since I would know the final results before the new year. My mom went with me for this one too. I suspected the results would be a bit different from the biopsy. I was right.

The final pathology showed that I had Stage 1a Invasive Ductal Carcinoma.

Pathology of tumors gives them tumor grades of three different types, each on a zero to three scale and I scored high marks on all three, 3 out of 3 for a total of 9/9. This really isn't something you want, but hey- I have always been a high achiever when it comes to test scores. Additionally, it is what's called 'Triple Negative' which means it is not sensitive to either hormone or Herceptin treatments. Again, not ideal.

The good news in the pathology was that the tumor was small, just under a centimeter and the fact that the lymph node was negative. Both are very good. woo hoo! Small battles!

What all of this means is that I also get to have chemotherapy. We looked at the possible chemo regimens and decided on the Taxotere/Cytoxan or "TC" chemo. I would receive it in four cycles over a 12 week period. I asked if I would lose my hair- the doctor said the chances were about 50/50.

Again, my poor mother was there for this news. I really wish she hadn't been. This was so scary for her. I just looked at her and told her it would be ok. It really didn't work that time, but I tried. I hate that I am doing this to them.

My first chemo was scheduled. My hematologist is now officially my oncologist.

Friday January 3rd

I cut my hair short in anticipation of my first day of chemo. It was very empowering.

Tuesday January 7th First day of Chemo

I would be lying if I said I wasn't nervous this day. I was. I was also very anxious to get started. The office was packed that day. It seemed everyone in town was there for something that day. I would have loved it to be quiet. Oh well.

I had my blood work and they led me back to the chemo room. This is a large room lined with big pink recliners. Each chair has an IV pole and machine dedicated to it. Some have speakers for the various televisions set up around the ceiling of the room. There are small chairs in the center for family and friends, although most people seem to come alone. No one seems to talk to each other. Most of them sleep.

The staff are among the friendliest and warmest people I have ever met. My first nurse is Lauren. She is 4'11" of love and energy. She explained each and every step and what I should expect. She went through side effects with me and eased my fears.

After 4 1/2 hours, my first cycle of chemo was done.

Wednesday January 8th

I receive my first Neulasta injection. Neulasta is a medication that, in layman's terms, tells your bone marrow to make white blood cells. A side effect of the Neulasta is that it may cause bone pain. I take Claritin and Ibuprofen to try to counteract this pain.


Cycle 1 Side Effects

I encountered some side effects so far, most of them minor. Here's the rundown:

Nausea- Some, but I was able to control it with Compazine

Intestinal upset- Gas, diarrhea mostly, not terrible

Ulcers- Mouth, entire GI tract, nasal lining. Mostly just terribly irritated rather than actual ulcers

Nosebleeds- bad. just bad. I had my nose cauterized twice, packed after the first time.

Hair- My hair started to fall out around day 14. I had it buzzed on day 18. I couldn't handle the wads of hair. Again, very empowering. Still had stubble falling out, but it was much better. It took another week and a half or so for the stubble to slow down. I now have a peach-fuzzy head. I don't mind it at all actually.

Taste- I can't taste food. Well, I can't taste most food. Proteins and savory foods are the worst. Dairy is the best. This is by far the worst side effect for me. Taking the taste of food away is like sucking the joy out of life. This started around day 16 or 17.


January 27th- Cycle 2 Chemo

Cycle 2 of chemo went off without a hitch and we shaved about 45 minutes off the time. Still very quiet in the room. I wish people liked to chat or something.

Neulasta shot followed on the 28th.

Cycle 2 Side Effects

All of the above plus:

Fingers- My fingertips hurt. I assume this is a nerve thing, but they are sore on the pads of my fingers. Cold is very bad for them.

Fatigue- I had this for the first cycle too, but it is much worse this cycle.

Dryness- General dryness- skin, eyes, etc.

Legs, Armpits- I haven't shaved in over a month! Unexpected BONUS!!!


Ok, now we are all caught up.

I will try to blog more as this odyssey continues. Feel free to comment

**like anyone reads this stuff**

See ya!