Monday, March 19, 2018

Three Year Checkup After Mastectomy and Reconstruction

On Saturday, March 17th, the day of Irish luck, I had my three year post mastectomy and reconstruction scans.  While my surgery wasn't until the month of June of 2015, I felt like I needed to get my check up slightly early due to some pain and burning sensations I've been having in my chest.  So, I was lined up for the fully gamut of tests...MRI, mammogram and ultrasound.  Enter stress and anxiety.


Let's flashback to 2013, which was my last MRI I thought I'd ever have, ever.  It was the beginning of the end when it comes to anxiety and claustrophobia.  I'd had MRI's before, as part of my surveillance, but something about this one was different.  I have no idea why I began to panic inside the tunnels.  Not sure if it was the constant clanking and banging noises, if it was because I was face down and couldn't see for so long, or if I was just plain scared, but I panicked during that one, unable to continue, stopping the scan early, and that was the end of them, or so I thought.  

I'm now 3 years post mastectomy and reconstruction, so it is needed to check on residual tissue as well as the implant integrity.  This time, I took a Xanax 30 minutes before entering the tunnel.  I was positioned and ready in the tunnel, where they then inserted the port for the dye, since I have a high fear of needles.  Well, apparently my vein jumped and she missed, causing a lot of pain, and a mess.  She then tried for my arm, not before saying "you have impossible veins."  Thanks lady.  Way to soothe me.  Anyway, port in, I'm in, we're ready.  I did my breathing exercises while in there, in through the nose, out through the mouth, over and over and over.  I'd feel the panic creep up, and go back to focusing on my breathing.  "Now we're injecting the dye so the next 5-10 min are really important that you don't move."  That did it, I felt trapped.  I had had enough of the banging, clanking and noises, enough of the sensation of dye being released, and my breast bone was killing me.  I was wiggling my toes, I was playing with the panic button in my hand, and I was about to explode.  Just as I grabbed the button to press and end it all, the 45 minute session was done.  

I don't think I'll ever get used to an MRI machine.



After the MRI, they walked me to the mammogram room, where I was informed that instead of the normal four images, I would be having eight.  Apparently, once you have implants, you have an additional four which are called 'pinching' images.  This is part of the American Cancer Society's recommended procedure.  Several views must be taken to see both the implant and the tissue.  So, the first four are what you're used to, regular squeeze, two angles on each breast.  

The pinch is different.  They literally squeeze the tissue, pushing the implant back and getting as much tissue forward as possible for the scan, and then take an image of just the tissue.  Imaging can only see 75% of your tissue with an implant in place, so 25% is nearly impossible to see...therefore the pinch.  I will say, the regular image hurt more than the pinching, and overall, I felt more discomfort with these images with implants than without.


After the mammogram, it was time for the ultrasound.  My last ultrasound is the entire reason I finally stopped putting off surgery and ran straight to the doctor for a surgical appointment.  Remember, I was diagnosed with BRCA1 in 2005, but due to having children and moving Internationally, there was never a time or a doctor where I was, where the reconstruction part of the surgery could happen.  In 2015, I went in for my routine mammogram and ultrasound, but this time, they made me wait in the waiting room...for a long time.  They finally said they wanted me to see a breast specialist that day as they found a cyst of some sort.  

Now, where I am, preventive mastectomy is not practiced, it's radical.  So, they opt for a lumpectomy and surveillance.  Yeah, not for me, no more, not to surgery I go.  I went back to the States for surgery.  I was never going to feel that way again...except, well, at March 17th's appointment.  There I was again, same exact room, lying on the bed, praying and hoping all would be fine.  I don't think anyone can ever truly explain the fears and worry we have going through this for most of our lives.  I started mammograms and ultrasounds in 2005....holding my breath every six months, wondering when I'd hear the C word.  I don't think it ever goes away, as it's now 2018, and I'm just as panicked, even with surgery having happened.

The right breast scan took a long time, and she hovered over one area for a very long time, taking still shots and showing the thermal spots.  She hopped over to the left breast, was done VERY quickly, but went back to the right breast.  At this moment, I really started to worry.  She was taking measurements, taking more still photos and staying in the same spot.  Now my pessimistic side appeared.  I just lay there calmly, thinking she'd say something to me, and after last time, surely they would.  But nothing.  When I asked, she simply said the doctor needs to read it.  

It's now two days later, the 19th, and I'm still waiting for results.  All I can think of is that if it was serious, they wouldn't make me wait this long, right?  

I'll be back with an update as soon as I hear, but for now, send all the good juju vibes you can.

Results are in!

I just got the scans back and they are normal.  There are no sinister or suspicious findings.  3 small right benign breast nodules on ultrasound - all normal.  MRI is normal.

Tuesday, February 27, 2018

A Poem: Standing Alone

Written May 10, 1996, my Sophomore year of college.  The symbolism of my parents raising me, giving me a foundation to continue to keep growing with the support of friends and family around me, even though both were gone much too soon.


Standing Alone

Fertile and strong,
A flower stands in a garden of love.
Each new day
Embracing the warm sun,
At night, enduring the cold.
Relying on gentle hands,
Those who add a little help
To the already rich soil.
Bathing in the tenderness
Of each drop of water,
Giving more life and strength,
A world of its own.
Each day a little taller,
Feeling the roots,
A support system,
Someone to lean on.

Strong enough to stand alone,
No more gentle hands caressing,
Only the rain from the sky now.
The sun feels warmer,
The nights aren't so cool.
The rain takes place of the watering can.
The sky is full of love,
The flower grows taller,
Reaching for the nurturing hands,
Not ready to say good-bye just yet,
Not wanting to stand alone.
As days go by,
The sun rises and sets,
Still helping the flower grow.

More of its kind begin to take root,
Surrounding the flower on all sides,
Encouraging the growth,
Knowing it's not alone.
Together the grow,
In a garden of love,
Remembering those nurturing hands,
The one's who created their beauty,
The one's they will never forget.
And that one strong flower,
Now more beautiful than ever,
Feels the warmth of others surrounding,
and knows that every cold night,
Every warm day,
Every drop of rain,
Is a sign of love,
From the nurturing hands above.

Sunday, February 18, 2018

A Poem: You...My Mom and Dad

A poem I wrote for a class in college, about my mom and dad, both of whom I had lost by this time.  The line "You said you'd love me forever" was the basis for the refrain in my book, This Much I Know.


You...My Mom and Dad

You cam into my life at the same moment I came into yours.
You showed me the ways of life;
From overcoming obstacles,
To being myself.
You took me by the hand for so long,
And then told me to go on my own.
No more sitting in your lap,
Or holding onto you in a nervous moment.
I was to become me,
All because of you.
You made me mad,
And so were you,
But never did you give up on me,
Like all the times I did on you.
You said you'd love me forever,
Be by my side, but now you aren't.
You hold me at night,
And walk with me during the day,
I know you're there.
You cheer when I succeed,
And you hurt when I feel pain.
I know you didn't mean to leave me behind so soon,
But I wish I could sit upon your lap once more,
And hear you read to me my favorite story,
'Good Night Moon'.

Friday, February 16, 2018

I Feel Different Here- Part 2

Another paper I wrote, this time, just after starting my freshman year of college, 1994.  I wrote about having just moved from Chicago to California and starting a brand new high school, mid year, Freshman year.  My mom was dying from breast cancer, and in the final days, they moved me across the country.  Talk about being uprooted and an emotional wreck.  You never know what's going on with someone grieving, and no, not everyone is the same, but maybe someone will be able to relate.


I sat down at the cafeteria lunch table with my first meal of the new school year.  Everyone was excited and talkative about what they were going to do for Spring break, and of course about being Freshman and all that goes along with it.  The room seemed dark because of all the brown wood decoration and flooring, an there seemed to be a horrible stench coming from whatever they claimed this meal was in front of me.  Sitting next to me was Briana, a girl I had just met that morning, and her friend Skip.  Even though I had their company, I felt alone because I was the new girl in town and was amongst people who were grade school friends.

Besides being alone, one more concern was on my mind.  I was waiting for the moment in conversation when the question would pop up about my family, primarily my mom.  I didn't have one anymore.  She had died the day before school started, and I had no clue as to how people would react to me since I didn't know how to behave myself.  Was I supposed to bring the subject up?  And when I did bring it up, what would they say?  'Deprived', 'take pity on her', or 'we'll never be able to relate to her,' is how i anticipated they'd think for sure when they found out.

Death just seemed to be such a casual topic for a lot of people.  Apologies were made and stories were told about the deceased person, and then that was it.  It seemed as if the whole acceptance and grieving process had lost its importance in society.  It is very easy for a person to feel left out or left behind after someone passes on, and when there aren't people who love you and know you by your side, then the grieving process can be even more taxing to the body and mind.  The sad part was that I felt 'special' because of the way people talked about those that were left behind.

I sat quietly eating my lunch, trying to smile at certain comments that were made about teachers, other people, and the lifeless town into which I had just moved.  An outcast, that's what I felt like.  Being a Freshman in a new school, in a new town, and worst of all, transferring just as the Spring term was beginning sums up the feeling of being detached from everything around me.

Many emotions and much confusion invaded my mind and no where to let them out.  It wasn't as if I knew these people well enough to let out my anger.  As the conversation went on and the lunch hour progressed, I started feeling a little more comfortable and began laughing out loud with everyone else.  Jest then, it happened.

"Heather, why did you move to Carmel?" Skip's eyes were wide, full of laughter from the previous conversation, and were penetrating right into mine.  My face became hot and flushed, my eyes started to sting, my hands felt clammy while tugging frantically at my fingers, and all the noises around which had been so clear before, suddenly became muffled.  I wanted to run out the glass doors at that moment, but couldn't even feel my body due to the numbing sensation tingling through it.  'Say something,' I told myself, but nothing would come out.  It felt like an eternity sitting there, and I knew I'd have to answer to get it over with.  What was my answer going to be?  How would it sound, pitiful or closed off?

"I moved in with my dad about a week ago because my mom was dying of cancer and they thought it was best I leave while I still could remember her alive.  She finally died yesterday after a rough four years of being sick and now I'm here."  I stopped talking and immediately wondered what had just been said because everyone had withdrawn from eating, talking, moving and worst of all, smiling.

Now I really wanted to leave.  I wasn't different from anyone else at that table, but after telling them something about myself, I was distressed.  How would they treat me now?  Dealing with the death of my mother was completely new to me and more terrifying than anything I had ever experienced in my life.

I can remember sitting on the bed when my father told me.  Holding back the tears and grief and asking my father to leave the room so that I could be alone was one of the hardest situations.  While sitting at the lunch table and watching people concentrating on me, those same feelings as I had with my father in my room telling me about my mother passing, returned.  How he stood there speechless, helpless, and wanting eagerly to know what to say and me not wanting him anywhere around.

Briana glanced down at her tray and carefully poked at her food.  Skip looked like he wanted to insert his foot into his mouth and change the subject, which is just what he did.  That's what most people do though, change the subject.

"Well, you're going to love it here!  We'll show you around and keep you busy to that you learn to love Carmel."  He looked around the table at everyone else, smiled, got no response, so he kept on eating.

That was my first experience with stereotypes and being looked at differently by others who don't have the same things to relate to in their lives.  The experience at the lunch table really made me feel I was being discriminated against for having something so horrible happen to me.

Even after getting used to the fact of not having a mom, my friends would still watch out for what they said about their families around me.  It was almost as if they looked at it as being a racial slur or as if they had to be politically correct in a sense.  I still feel uncomfortable and awkward in certain situations when the subject comes up, but I don't think I would as much if people would stop apologizing for it.

I try to be honest as I can when discussing my experience with people, but then I see them squirm and all they can say it, 'gee, you're really brave.'  What's that supposed to mean?  Bravery or courage has nothing to do with being able to express my feelings on the subject, but if that's what people want to think, then that's what I have to accept.  Death is not something you can apologize for, even though it seems to be the natural response to any situation that makes the other party uncomfortable.

Losing my mom was definitely a tragedy, especially for me being so young, but the whole idea of feeling that isolation made me realize that there is a culture out there.  Actually, I'd have to say a lost culture, death and acceptance.  All those people out there that have lost someone close to them and then not knowing what to do, all have a special connection among them and yet don't know how to react when conversation about dying comes up.

I'm going through the same situation now.  My dad is terminally ill and I get the same response from people, like that first day in the cafeteria.  You never know what kind of heart they may have about situations like these, so I guess I'd be the same way.  Maybe they want sympathy, maybe they don't.  Either way, I've learned to accept people's reactions better now, the second time through, than I did before.  I simply say 'thank you for your concern' and try to answer any questions they have.  Death doesn't have to be such a 'taboo' topic.