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Cancer Journey

Cancer Journey/ HEALTH/ Love/ Music Renews/ Spiritual

Being Held

I’ve had an influx of subscribers lately, so I thought I would start this by filling you all in a bit on where I am at in my cancer journey.

Here is a timeline:
Aug 2010-diagnosis: Stage 3 Invasive Ductal/Lobular Carcinoma
Sept 2010-port surgery
Sept-Nov 2010- chemotherapy
Dec 2010 -mastectomy + reconstruction
Feb 2011-Radiation –28 rounds
TODAY- round 13, halfway done with radiation!!
May 2011-“phase 2” of reconstruction
June 2011- tattoo time (read more here..)

For details of the journey, click here or on the Caring Bridge button in the sidebar.

I have come far.  I have so much to be thankful for.  There are many ups and downs.  Today was a down, I write about it below… but I’ll get back up there.
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{Halfway radiation point & “down” isn’t my best look..but I do like my  new hat that looks old:)}

Journal

I was late for radiation today.

It was a hard morning…I just could not pull myself together in time.

My radiation therapist, Mr. Brad, was so kind, reassuring me that they can be flexible, and that it was ok.

I told him a bit of my hard morning, he listened and said he would pray.

Then, I told him, with tears flooding,

“I am weary”

He looked straight into my brewing storm and without hesitation, said:

 “but the Lord isn’t”

 

A nugget of truth that shot straight to my heart and immediately brought internal storm rest.  I exhaled and went on to face my day.

Oh Truth, sweet truth

From the written Word and the words of His people!

What would I do without Truth?

Truth has been harder to feel lately.

I KNOW truth, I SEE it, but it FEELS far away.

Lots of “static” in the way.

Busyness of thought that creates distance from grasping the feeling of truth.

I know I create some of that static, and I know that giving up a medication and adjusting to that give up creates static.  I also know some of it is just life right now.

It. Just. Is.

This said static got the best of me this morning–it was oh, so loud–it comes and I kick and fit and shake my fists.  Eyes up, head down, at times– in hands.  Tissue thrown in piles on floor.

I blurt my static…to Him.  To husband.  To my Carma friend.

Words of “whys” and “no’s” and fears and questions and closed hands and fed ups..my words.

“But Lord…”

“No Lord…”

“Enough Lord..”

Vivid dreams have turned from normal into nightmares.  Can I just have one day of my life before?  I don’t want this unknown anymore.  I want concrete, expected, easy.  I want pretty, no scars.

Lord, do you see?

My Lottie-3 -year- old- Mae, the bravest fighter, her mother torn from baby sister to seek treatment far away.  Leukemia in a child is enough, Lord, enough.  But..bacteria infection and pneumonia, too?  Families who love and yearn, torn from each others presence? It seems too much..

Lord, do you see?

The man after me, there for radiation therapy.  The only color in his face are blood shot eyes that are hollow, but still smile at me.

Lord?

My husband, who deals with enough by dealing with me. He is sitting at table, deep in thought, while shuffling the mounting bill piles, doing his best to make them all fit.

Lord.

The statistics they scare me, why can’t I have a concrete answer?  Please?  Stage 3a or Stage 3b? Which one is it?  It matters to me.. 70% or 39%?  Why can’t I let go of the numbers? Hands grasped, closed tight.  Digits grasping digits.

Oh Lord, and these women…

These dear, strong, fighting women.

Stacy, Nancy, Amanda, Stacia, Veronica, Elaine, Connie,  Gina, Michelle, Heather, Monique, Jill

Women who have felt lumps, endured scans, had parts of themselves cut on and cut out, allowed chemical chemo to flow through veins and radiation to burn both good and bad cells, who felt razors and cold air on scalp, have to take pills that keep wombs empty and all the while are wives and some mothers and burden bearers for each other.  Oh Lord, these women!

 Lord, do you see?

So. Much. Static.

The above is enough there is so much more.  Unnamed more.

Lord?…?

Then.. my Lord…
My GOOD, good, God…
He whispers to me.

“Yes, Amy, I see.”

 

“I know you are weary, but I am not.”

 

I SEE.  I, too, wept. 

I KNOW.  I, too, have scars.

 

I can handle your cries to me, My child.

I’m so glad you’ve come to me… 

For I am the Way.  The Truth. The Light.

 

I will make sense of tragedy.

I will be your burden bearer.  

Hand over the load. I was meant to bear it, not you.

 

Endure, child.

 

You know on this earth there will be pain and trials.

It was not meant to be this way, but it is.  

I will fulfill my promise to make it all right again, in my time.

 

This is what it is in an imperfect, sin- infested world.  

This is why I sent my Son, for a way out of it all.

 

You’ve tasted the hand of bitterness, do not let hatred numb your sorrows.  
Do not clinch your hand closed tight.



The wise hand opens slowly, to lilies of the valley and tomorrow…to Me!

 

I gave you the words to this song in your heart.

I gave you these words years ago, knowing you would need them in these fist shaking moments.

“This is what it means to be held, how it feels..

When the sacred is torn from life and you survive

This is what it is, to be held, and to know that the promise was 

when everything fell, you’d be held.”

I am holding you.

I have not promised a pain free world and life.  

But, I have promised that I AM Life, the Way, 

and I will be holding you every step.

These are God’s whispers to me.

 

I listen.

I search Youtube and find that song.


Natalie Grant

I listen again.

The static volume lowers to just a whisper and I find truth–and I am held.

{Words To Natalie Grant’s “Held”}

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
Were asking why this happens to us
Who have died to live, it’s unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held

 

16
Cancer Journey/ HEALTH

I Found My Spring Wardrobe

I found a great website.  It is called
 It has a ton of information and is doing a ton of good for those who are fighting cancer at a young age.  
My favorite part?? 
 They consider ME young:)
  They speak out for people with cancer who are 15-39 years old.  
I am 34.  
  I love their message, especially because I have met several other young women fighting cancer who started their fight with an advanced case, just like I did, because their doctors didn’t take their symptoms seriously.

Doctors need to get used to seeing young faces as the faces of cancer.  
My second favorite part?

The shopping tab at their site.  Looky what I found!!  Notice…no pink!!
I’m off to see if there is anything left in our clothes budget…

2
Cancer Journey/ HEALTH/ Spiritual

Cancer Journey

{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}

These next two journal entries are pretty different from each other, despite being written one day after the next.  Peaks and Valleys…
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Oh how God makes me laugh!!!


I went to my PT yesterday, first time since my biopsy.  I had been surprised that my range of motion was feeling good, despite surgery.  

I showed her what I could do, and after looking at my cording she said “Amy, I think that biopsy was a blessing in disguise…that large, thick cording is gone.”  

HA!!
HAHAHAA!

Isn’t God funny?

He knows the plans He has for me.  He takes things that are scary and painful and makes them beautiful.  He is full of surprises and He is so very, very faithful to me!!  

The thick cord ran right to the lump that I had removed.  The incision was enough to release the tension.  I just can’t believe how cool that is…

There is still some cording, but she measured  my range of motion and it jumped to almost perfect.  I still have some work to do, especially with building up strength in my pecs and shoulder,but without that thick band running up my armpit, I will get somewhere. 

I have learned by looking back on trials in my life, that in each one there is a treasure.  Sometimes I have to look hard.  Sometimes the treasure does not show up until years later.  I love that this time He showed me the treasure right away.  

Here is what I have been hearing Him say to me, mostly through His Word, some through song…

“See Amy, I got you!” 
“You are mine”
“Wait on Me”
“I will show You great and mighty things”
“I won’t waste your tears”
“You don’t need to know outcomes, because I do”
“Even if the outcomes are not what you want, I will give you a supernatural strength to get  through them” 
“Whether on earth or in Heaven, you will never be without me”
“Rest, Child, Rest”

I am resting.
I am rejoicing.
I am thankful.
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I read my last journal entry and cry.

He gives me so much, so much more than I deserve.  

Life. 
Grace. 
His word.

I say I am thankful…and then…life happens.

Something as simple as a dream can trigger discontent.

I used to fear nightmares, now I fear good dreams.  The ones where I can run fingers through hair and feel care free.  Where all is set right and there is no awareness of what it feels like to fear death and unknowns–ignorant bliss.  I wake to a reality that is jarring.  Bickering children, chest muscles stiff & hurt to move, the memory of another lump felt by me and husband before drifting to sleep.   

“Come what may“

Why are those words so fleeting, impossible to grasp?  Every fiber in my being screams “NO!”  Evidence that my will is wanted, not His. 

Is this the learning?  Is this why the Apostle Paul says “I have LEARNED, no matter what state I am in, to be content?”

Is this learning something I will ever truly grasp?  Days like today it feels so far away..  

I’ve been shown the way.  I walk in it…then suddenly..the path feels cut off, and I’m left groping in darkness.  



“Light of the world, you stepped out into darkness.  Opened my eyes let me see.”


He has shown me, I’ve known His light.  

How is it that even in light revelation, even with eyes opened, emotions stay in the dark, closed.  

I am weary.
I want all of this to be over.  
I’m tired of lumps, of fear, of scalp showing.
I don’t want to be “that girl” anymore…the one with the branded ”C” for all to see–this is why I long for hair.  Not for beauty’s sake, but for anonymity.  
I want to blend in.
I want to hide.

I know to be hidden is to give into darkness.  I cannot hide in the light.

Yes, I want all of this to go away…

..but..

…an even stronger desire of my heart flickers.  
Not by my doing, but His.

A spark– one that is gently blown on by the Holy Spirit, ignites and becomes flame.  

Becomes light.

It’s warmth beckons me and I remember it is a light that never, ever, goes out.

 I will claim the truth of His word, despite what emotions tell me
because…

“Your word is a lamp to my feet and a light for my path.”

Psalm 119:105


It is your Word that turns spark into flame and flame into fire and fire brings light. I take a step called faith out of hiding and I begin to feel warm and safe.

 Emotions follow truth.  


These are the lessons of contentment.  I am learning, so, like Apostle Paul, I too can say that I have learned.
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His Word That Brings Light:


PSA 27:1 The LORD is my light and my salvation– whom shall I fear? The LORD is the stronghold of my life–of whom shall I be afraid? 


PSA 130 The unfolding of your words gives light; it gives understanding to the simple.

PROVERBS 6:23 For these commands are a lamp, this teaching is a light, and the corrections of discipline are the way to life.

ECC 2:13 I saw that wisdom is better than folly, just as light is better than darkness.  ECC 58:8 Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard.

1PE 2:9 But you are a chosen people, a royal priesthood, a holy nation, a people belonging to God, that you may declare the praises of him who called you out of darkness into his wonderful light. 

1JO 1:5 This is the message we have heard from him and declare to you: God is light; in him there is no darkness at all.

v.7 But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin.

REV 21:23 The city of Heaven does not need the sun or the moon to shine on it, for the glory of God gives it light, and the Lamb is its lamp.  

4
Cancer Journey/ HEALTH

Cancer Update


{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}



I am so grateful to be able to tell you that the test results came back as negative for cancer!!  Surgeon said it looked was scar tissue and part of the collagen sling they used under my skin in reconstruction.  Whew!!

Surgery went ok.  I was pretty down emotionally when I woke up this morning.  Kind of a “here we go again” attitude.  Pouting about more scars and more stitches and more soreness.  I had a rough weekend with the same ickyness emotionally, I got pretty down. 

 I did find it quite therapeutic Sunday to make some junk food for about 8 of my husbands CI junior high boys.  They came to watch the Superbowl and it was a party up in here!   

Todd and I were greeted this morning at St. Elizabeth Hospital by my neighbor, Jay.  He is the cancer nurse navigator there and is always a comfort to see him there.  He has such a calming way about him.  He had my back, answered questions, and even hunted down my PT to ask her about a concern I had.  Love him.  My dad got to meet him and commented on how amazing it is, all these people God put in my path to help me along the way..

As they took me into my short stay room, my dad was sitting there waiting for us.  Loved seeing his face, loved his company, loved that he was wearing his Green Bay Packers shirt to rub it into Todd 😉 He stayed with me most of the day, and bought me a healthy lunch from our local health food market. 

My friend and fellow cancer fighter, Nancy, had scans at St. E’s today, so I got to see her face right as they were wheeling me to surgery.  Would you lift her up in prayer?  She has completed chemo, and wants to move on with surgery, but it all depends what these scans say.  She is an amazing, Godly, women and such a great friend to me.

My sister, Julie, also came up.  She was in my room to greet me after surgery.  At first she was just a blurry blob:) but even blurry her beauty shined through and I knew who it was. 🙂  Todd was there and stayed until we got the test results call.  Then it was off to work for him.  

The only complication in surgery was a blown I.V.  The anesthesiologist put in 2 anti-nausea meds, my anti-biotic and sleepy meds.  He told me I would feel a slight burning.  Two seconds later, my arm felt like it was on fire.  I was groggy but awake enough to tell him several times that my arm HURT!!  Sure enough, my vein was blown and medication was leaking into my
arm.  My right wrist blew up all crazy large and is still swollen and crazy looking.  Nurse said I would have a bruise to brag about.  A positive from all of this is that it really motivates me to keep up on therapy with my left arm. A swollen wrist/arm is not fun and is very sore, so I will do whatever I can to keep  my left lymphodema free. 

My last memory was my surgeon telling the anesthesiologist that he was going to numb and use my port.  I was SO THANKFUL because I knew after a slight poke, the meds would go right in to a main vein on my neck, SUPER fast delivery.  I was out.  Or, at least I was in twilight and too happy to care what was happening.

I do remember saying several times…”wow, these drugs are great!” “I love these drugs” “No wonder people struggle with drugs”  🙂  I had just been so down emotionally that I really could not believe how happy and carefree I felt. Plus it took away the physical pain of my blown I.V.  It was too much fun:)  No worries, friends.. I’m not gonna do anything stupid!! 

I look back over this little bump in the road and I won’t lie, it was a tough one for me.  

But, again, God showed himself.

He showed himself through all the amazing people in my life who love me, send me facebook messages, sign this guestbook, texted me, prayed for me and who showed up at the hospital.  He shows His faithfulness to me all the time in the doctors and nurses I get to know.  

The last, but not least way God showed Himself to me today was through a verse. 

Yesterday I was struggling and the phrase “Why are you downcast oh my soul” kept going on in my head.  I sat down and looked it up on the computer, and the rest of the verse I just loved…here is the Message version, which I posted as my facebook status last night

Why am I discouraged? Why is my heart so sad? I will put my hope in God! I will praise him again–my Savior and my God! Psalm 43:5This morning, I woke up and ran around crazy trying to get my girls read for school —they didn’t know about this latest test, wanted to keep them worry free— and me to the hospital on time.

I kept passing the bag I threw my devotional “Steams In The Desert” into, which is the one I try to read every day.  I had not read it in at least 4 days. I felt a strong pull, and thought that I needed to stop and read it before leaving, knowing that it often gives me a tidbit of Scripture to lift my heart.  

I turned to February 7.  The verse for the day??

“Why Are You Downcast Oh My Soul” Psalm 43:5

Cool huh?  Yep, He is!!

8
Cancer Journey/ HEALTH

Cancer Journey-Update

{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}

Thought I’d give you a pic of me with hair, in celebration of the fact that mine is growing.  I got about a half inch goin’ on, and it is thickening up
It is also my husband, Todd’s, birthday today, so I thought I’d put him up there too!
(*update–it is his birthday tomorrow…I’m laughing at myself b/c I wished him a happy bday thing morning when I was half asleep. I bet he thought I was nuts and had a good chuckle…CHEMO BRAIN!!)
Ready to continue on this crazy “up and down” ride with me??
My last post told you the lump my physical therapist recently found was bone and scar tissue.  This was checked by a nurse practitioner, by feeling, not a doctor.

I had PT therapy again yesterday morning, and again, she spent a bit of time feeling the lump area, with a puzzled look on her face.  We discussed the possibility of me visiting Dr. Hinze, my plastic surgeon, because he was the last one in there and may have a better idea if it is scar tissue.

As I left my PT session, I received a call from my good friend, Nancy, who gently told me a story of a friend of hers with breast cancer who also  found a lump shortly after her mastectomy and was told it was scar tissue.  It ended up being cancer, and she regretted not getting a second opinion.  She told me to follow my gut and was really encouraging.  

Those two things were enough to get me to call Dr. Hinze office.  They had just happened to have a cancellation for the following morning– this morning.

So thankful I could get in right away.
God fits all the pieces for me.

I saw Dr. Hinze.  He could visually see the lump we were talking about and when he felt it, he agreed it would be good to check it out.  He was so very, very kind and reassuring…always has been.

His nurse, who also has been amazing every step, took me into her office to coordinate with my radiation oncologist, Dr. Rao, who I was supposed to see this coming Monday.  He is another doctor whose gentleness was so appreciated today. Even though we have not met yet, he has called me personally several times and has been so kind on the phone.  He asked the nurse to talk to me and he said “We are going to check this out.  We are all here for you and are going to take good care of you. We need to know what this is, as it may change the plan. I will call you the minute I get the biopsy results.  Try not to worry, everything will be ok”  He was so sincere.  I can’t wait to meet him.

Doctors and nurses (and physical therapists!) have become my heroes.  I have been so blessed by them.The plan:
I will go to St. Elizabeth’s Hospital Monday morning, to have the biopsy done.  Surgery is at 10:20.  It will be strange to be where I had my mastectomy again.  It is a quick procedure, I will be in “twilight” sleep.  

I am not sure how soon we will have the biopsy results back.  That is ok, I’m getting better at this waiting thing..

Today I feel…quiet.  Contemplative.

I feel so thankful that everything worked out so quickly.  I feel thankful that I was somewhat prepared for this day, because of the hard day that I told you about last journal entry. I feel so very taken care of by my medical “team” of doctors.  I feel the Lord’s peace.

I also feel sad.  

But then I am reminded of this — I read it last night.  It prepared me and gave me a visual of what the God of the Universe does with my tears.  

6
Cancer Journey/ HEALTH

Cancer Battle Update

{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}

As you can see in the picture, I get to wear what looks like “grandma panty hose” on my arm.  It goes great with the fuzzy grandpa haircut I got goin’ on.  Oh, the lovely things cancer brings into ones life!!



I went to my first physical therapy session today and I am SO GLAD I DID!  She was awesome.  I love her.  Very much. Which is a good thing as I will be seeing her twice a week at 8:30 in the morning.  8:30 is usually when I roll myself out of bed in the mornings, so its a good thing she is worth it.  
 I was not sure if what I was experiencing in my arm was just nerve related, but I felt like something was just off. I wondered if I was being a pansy.  I wasn’t:) 
 My PT knew right away what I had–
It is called Lymph Cording.
Basically, when the lymph nodes are cut out during surgery, it can cause the lymph vessels to spasm and freeze up.  It happens in about 10 percent of cases–of course I’m part of that 10% club. Whoop.
Here is some info on cording:

  • Cording occurs as a result of the lymph glands and lymph channels being removed from your axilla region or armpit
  • Cording often shows itself as a palpable tight and painful band of tissue (like a cord – hence the name) running down the arm towards the hand
  • Cording can be felt at any part of the arm (Marjory had pain and tightness down the back of her arm but I’ve heard of other women who feel it in the forearm or around the elbow)
  • Cording is a kind of soft tissue tightness usually seen in the axilla.
    It can extend from the mastectomy or lumpectomy or even the drain scar down the arm to the wrist. It is painful and can sometimes recur. The pain of cording can settle in a few weeks or can last for months
  • Some physical therapists say that the cords can be stretched or massaged and that this can lead to an immediate improvement in range of motion and a decrease in pain. Some women say that massage is too painful to tolerate
  • Cording is probably due to changes in the arm’s lymph vessels and can appear six to eight weeks following surgery or even months or years afterwards.
  • Cording usually gets better spontaneously, though you may need physiotherapy to stretch the cords and some doctors may give you antibiotics as treatment
 If you look at the picture above (the L is for Lymph, not Loser-heh) you can see the beautiful cord running right down the middle of my arm pit.  I think it resembles a chicken wing, which gives me the urge to do the chicken dance. 
It makes it next to impossible to shave, when I told my PT this she said “no more shaving…you do not want a cut there, especially when the lymph system is not working properly” I looked back at her in horror…not only do I have a chicken wing for an armpit, but it will be one with hair.  So. Very. Wrong.
She quickly explained, very cheerily, that it is not a big deal as “radiation will zap those hair follicles and you will never grow hair on that armpit again”  My look of horror turned to a satisfied smile. Something positive about radiation… cool.
She had me lay flat and lift a yardstick straight up with both arms.  I felt the painful “rubber band” feeling on the inside of my elbow.  When I told her this, she said “Well, look at it”  With my arm in that position, you could clearly see 3 little bands pulled tight right underneath my skin.  I couldn’t believe it!  No wonder it hurts!!
She said she was going to do some manual lymph drainage.  That did not sound fun to me, but it was great.  The lymph vessels are right under the skin, so very gentle manipulation makes a big difference.  She started the manipulation and it was painful at times, but she was gentle, and rubbed my arm like you would a pet a cat. She explained that the direction that she goes is the key, and showed me how to do it. When she first started, there were a couple places, when touched, I had to go to my happy place.  Within 5-10 minutes, she was able to manipulate the same areas with little pain.  I thought that was amazing, especially since the petting (meow) was so soft.  It seems like it would not do anything but relax me, but it actually did!  I was grateful.
This is where the lovely arm compress comes in.  It helps keep the lymph fluid distributed. 
 I. No. Like. It.
But, we need to become friends because it will be a part of my life for the rest of my life.  I don’t have to wear it all the time after treatment is over, but whenever I am active (meaning whenever my heart rate is elevated–running, swimming, aerobic type exercises-you know, those things I never do) I need to wear it.  I also have to wear it anytime I fly.  
This will keep me from developing full blown Lymphodema, which is where the fluid drains into the arm and goes nowhere, which causes major swelling.  That is something I really want to avoid so I will do my exercises and learn to like my arm compress. I have to wear it during the day while we are getting the cording under control.
She is confident I will be able to get my arm above my head in two weeks for radiation, if I work hard and keep coming to see her.  
I will.
Poor Todd had an interesting reaction to all of this.  He has been a trooper with all the changes happening to his wife, but when I told him that the cording could rip and “pop” if manipulated to hard, he cringed.. for like.. 5 minutes. 😛
 I don’t think my new granny hose accessory is really his thing, maybe I should have gotten the pink leopard print…no joke, THEY REALLY HAD PINK LEOPARD PRINT!!:)  The one I had ordered is black.  I’m not too into trying to fool people with a flesh colored one.  Who we kidding?
 It cracked me up to see all the different prints they had to offer.  
I’ll take boring black, thankyouverymuch.

10
Cancer Journey/ HEALTH

No More Chemo & A Plan Of Action

{**The following is an entry from my Caring Bridge journal.  If you would like detailed updates on my health, please visit my Caring Bridge site by clicking here.}


Doctor called today to tell me what was discussed at “Tumor Panel” on Tuesday.   Dr. Midathada and the pathologist that retested my tissues were both there to present my case.


The first thing that was established as the pathologist presented his new findings is that indeed, they all agree it was more than likely all Lobular Cancer from the beginning.  
They came to this conclusion because the stain, which tests for the protein E-cadherin, came back negative.  Here is what I found in my reading about E-cadherin…
“More recently studies have shown that infiltrating lobular cancers are estrogen positive…and they lack expression of the protein E-cadherin, which helps cells stick together.  Its absence may help explain why lobular cancers don’t cling together in a nice lump but march cell by cell through the stroma in single file lines forming a diffuse pattern that is often difficult to detect, until tumor is very large.” 
Because both tissue samples tested negative for the E-caderin protein, they believe it is Lobular Carcinoma.  Makes sense to me!
Having this established, they were all in agreement that:
1.) I responded extremely well to chemotherapy.  Lobular cancer usually does not respond that well.  I had a 6 cm tumor that shrunk down to .8 of a centimeter.  That is great.   I had no choice to but do chemo first because of the size of the tumor, it needed to shrink before they could remove it, so treatment would have been the same even if they knew it was Lobular instead of Ductal to begin with.
2.) They do not believe I need more chemotherapy.
It would only shrink my reccurance rate down a couple of notches, and the side affects are just not worth the treatment.  Lobular cancer responds much better to Hormone therapy, so that is the path we want to be on.
There was a consensus that radiation was very important, due to the cancer being .1 centimeter away from my chest wall when they removed it.  I agree.  That is such a tiny margin, I feel like this is an important thing for me to do, despite my dislike for radiation!  I will start radiation in 3 weeks, it will be everyday for 6 weeks.  I should be done around April 1st.  After that, I will take Tamoxifen (a pill) for 5 years, which is the hormone therapy that Lobular cancer responds so well to.

They also discussed whether I should remove my ovaries in the future.  They produce estrogen, which is what fed my cancer.  I am only 34, so I will be 39 when I am done with the Tamoxifen pill.  That is still a ways from menopause, so they think I should consider having them removed.  I am thankful we have 5 years to decide that, as the pill I take suppresses estrogen.
That is all she had for me.  
I had a couple questions for her.
1.) I’ve had rib pain, low on both sides, spots tender to touch.  Also an area round in my back ribs. I had some slight uptake in the ribs in original scans, so it made me really nervous.  My thinking was I have not had chemo treatment since Thanksgiving, and I wondered if something was there if it had time to grow.
Doctor reassured me that if something was there, it would have shown up in the PET scan.   I didn’t like that answer, because the little bit of cancer I had left before surgery did not show up in the PET scan.  She said that was because they were such small areas.  .8 in my lymph node, and .8 left in the tumor area.  She said they need to be at least 1 cm. to show up in a PET scan.  She said I could have another bone scan if I needed peace of mind, but that she felt good about not doing that.  I do not want more radiation, so I am going to sit on it and see if the pain goes away.  My mastectomy was very invasive and has caused all kind of chest and rib pain, it could very well be that.  The area in my back ribs that hurts is just 2 inches from my armpit where the lymph nodes were taken.  They go quite deep into the arm pit to remove those, so that pain could very well be from the trauma of that area.  I am going to do my best not to worry about it, but I will do a bone scan if it just does not get better or if it gets worse.
2.  I’ve also had some pretty intense burning in the area where the tumor used to be.  It has kept me awake the last 2 nights.  
She reassured me that is very normal, due to all the nerves that were cut, especially on that side with the lymph node removal. I have had very little pain on the other side, so its hard not to worry, but I know that lymph node surgery makes everything on that side very sensitive and hard to heal.  Which brings me to:

Physical Therapy

My range of motion in my left arm is not great because of lymph node dissection and nerves that were cut.   I will need to be able to raise it over my head for radiation, so I’m concerned.  Right now, I can raise my elbow up to shoulder height, but no higher.  It is just a painful pulling sensation in my armpit if I try to go higher.  I also am not able to straighten out my arm completely.  It feels like a rubber band pulling on the inside of my arm when I try to straighten it out.  I am nervous about physical therapy–I don’t like pain!!  I do feel very blessed because there are only 2 “lymph system physical therapists” in Lincoln, and the one who many people recommended to me is willing to stay late and get me worked in before radiation.  I was told no at first, but God worked it out!!  I am thankful.

How am I feeling about all of this??

I am so excited that there will be no more chemo.  My hair is 1/2 inch fuzziness, and I did not want to lose that!  I’m ready for hair again.  My last chemo session scared me a bit.  I just felt my body getting starting to get weak and I was so relieved there were not any more sessions.  So thankful.

Although excited, I know there is still some road of this journey to tread. The following would also be my prayer requests:

 -Not sure how I will do with radiation.  It can cause fatigue and skin burning toward the end.  I am also nervous about it ruining my new boob job:) That could very well happen.  Prayers for protection of my new boobs, please!!  I really like them, but I’m trying not to get too attached b/c I know what radiation can do to the one.  🙁
-I am also getting tired of being in the healing phase.  The first 2 weeks I felt like I did great, this last week it seems to be taking longer and I feel impatient.  
-I’m a chicken when it comes to physical therapy.  I just don’t know how my arm will ever go over my head again!  I am ready for it to be able to, because I am vain and miss tying my scarves on my head.  My hats are getting boring:)
Whew!  That was a lot.  Thanks for reading and for all your encouragement.  

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