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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.  

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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.

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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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Cancer Journey/ HEALTH

My Oncology Appointment Today

I went in to discuss my pathology reports with Dr. M today.  It was so good to see her.

I was very eager to hear the results of my Oncotype DX test, which we have spent 2 weeks waiting for, but the results were not in yet.  They do expect them today or tomorrow, but– we are keeping it interesting for you all again–these results will not tell us anything because they sent the original biopsy specimen instead of my surgical biopsy specimen.  So now, they have to do a second Oncotype DX test, which means 2 more weeks of waiting…CAN YOU BELIEVE THAT???

Dr. M was not happy about it, at all.

We were so relieved that it looked like insurance was going to cover the first test, but to get approval for the second test may be tricky.  These tests are $3,000 each!   All I gotta say is, if insurance does not agree to cover both, it is a good thing Todd’s dad is an attorney and can give us free legal advice!

Todd wrote about my pathology report here, and we really didn’t learn a whole lot more.  The reason why a second test is so important is because there are 2 different type of cancers we are dealing with now.  We knew about the Ductal Carcinoma because that is what showed up on my original biopsy.  The Lobular Carcinoma was shown in the surgical specimen, the tissue that was taken during my mastectomy.  The Oncotype DX test that was just done on the Ductal, she expects to come back as high risk, but that does not matter because chemo took care of that.  The second Oncotype DX test they do, which should have been done in the first place, will be on the Lobular Carcinoma tissue.  She said if she had to guess, she expects it to come back as Low risk, but is unsure and we just have to wait.

Low risk would mean I can go straight onto radiation, then hormone therapy (taking a pill, Tamoxifen, for 5 years) which would be great.

Med. risk, we are not sure what we would do.  It is a gray area.

High risk we will for sure do more chemo.

Lobular cancer is interesting.  It is more quiet, almost stealth like.  It is slower growing, but does tend to spread to lymph nodes like mine did.  It is harder to be felt, which is why it seemed like all that was left was scar tissue.  It responds well to hormone treatment, and less to chemo treatment, which could be why the Ductal is gone but the Lobular is not.  It does not show up as well on scans, which helps makes sense of my negative PET scan.  The lymph nodes did not show up on scans because they were minimally positive.  .8 centimeter is too small to show up on scans.

She sent us home with the surgical pathology report, and I have to tell you, it is WEIRD to read about yourself in this way.  Gives me shivers to read about my insides being removed and studied on the outside.  Here is an example of what I mean, again, just to keep you entertained:)

A. LEFT BREAST TISSUE: Received fresh (ew) in a container labeled “Bowman, Amy S. (that’s me!). Left breast tissue, two pieces with axillary tissue (lymph nodes) attached is 14.5 x 9.0 x 2.0 cm left mastectomy specimen. (told you I was small chested:)). On the anterior surface there is an ellipse of skin with a central nipple (yes, I had to go there!  That was the weirdest part for me to read so I have to share!!) The breast consists of 40% gray (gray?  is that normal?) fibrous and cystic soft tissue with a definite infiltrating lesion. (so glad to have that sucka out)…

…ok I’ll stop there, but there are 3 more pages:)  So. Very. Weird.

But not sad, because I must tell you, I really am beginning to like my new parts!!  Just wait… I’m sure I will write a post about it 🙂

So yes, more of the waiting game.  I am learning to laugh and shrug at these waiting games.  I’m trying to learn how to find joy in the journey, or on this “roller coaster” I might say, to find meaning in the ride.  More about that here...

Thank you for your continued prayers!

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Cancer Journey/ HEALTH/ Spiritual

Riding The Twists And Turns

I’ve talked to you about this roller coaster called LIFE that I feel like I am on.

Lately, I’ve been in a line, feeling stuck.  It is called the “waiting- for- test- results” line, and it seems never ending because the results of these tests need more tests, and on the wait goes.  It is not fun.

 I think that I tend to stand in this line, to the side of this coaster called Life, almost paralyzed, sometimes being willing to take the ride, but lots of times I am distracted, just standing in line, waiting, because that seems like the natural thing to do.  It is what is expected.

I feel like something has been revealed to me.

I see some empty seats on the coaster ride that I had not seen before.  Why have I spent time waiting in line when there are empty seats that need filled?  Not only are they empty, but the ones I am meant to sit in are made only for me.

I am learning how to resolve myself to the inevitable twists and turns that come while I am on.  I am learning to buckle up and find joy in the ride, despite the uncertainty and insecurity it can create in me.  The extra brave hold their hands up, even when the coaster seems to be spiraling out of control.  I want to be extra brave.  I want to hold my hands up in glee, letting go of all control, because I know the buckle will hold me.  He is my security.  He is trustworthy.

He has reason for my ride.  He has seats that only I can fill while on it.  He knows the joy and freedom I can experience when I am being exactly where I need to be, buckled in at all times. If I refuse, I am missing out on this Joy ride.  I’m especially missing out on those riding around me, for you see, they too, have twist and turns that are scary.  

I REFUSE to be one who gets stuck and distracted, with what seems like important busyness, when really, all it is that I am doing is

nothing

but waiting in a line that is meaningless, when there are empty seats.  Custom made seats for each individual who are willing to jump on.  Who are willing to see those around them, who are willing to see that together, if buckled in, they can do amazing things for eternity.

All that to say, I’m gonna ride while waiting.
God, give me the courage to keep hoppin’ on.
______________

I heard this song yesterday called ‘I Refuse“by Josh Wilson and I LOVED IT!!  IT’S MY NEW FAVORITE!
It made sense of all the things on my heart lately.  It was fitting that the first time I heard it was on the one year anniversary of the Haitian Earthquake. Take a peek/listen (lyrics are included) if you please.

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Cancer Journey/ HEALTH/ Spiritual

Help In Time Of Need

I had another really good day!  I feel like I am healing quickly.  The burning sensation in my chest is less, and the range- of -motion in both arms is improving.

 I had a friend over this morning who is also fighting breast cancer, we had the best time talking and connecting.  God and cancer have entwined our hearts-I love you, Nanc!

I was treated to a pedicure this afternoon by my friend Keeli.  IT WAS SO GREAT to do something girly with her.  It was relaxing and conversation so meaningful, as it always is with my Kee!  Loved it.

Tonight is family movie night.  My friend, Karma, is ordering Italian food to be delivered for our dinner.

Am I not the most spoiled girl in the world?:)

I took some time to read through my journal the other night, and it was so cool read back over the last year and see how God prepared me for the fight I had coming up.

There was a page that I had written while sitting in church last spring, long before I knew I had cancer.   We had just finished singing a song in church with these lyrics:



Since I am so sick 
Since I am in need 

Since I have no healing within me 

Oh, my God, be mindful of me 

You are my help and my Redeemer 

Oh, my God, be mindful of me 

You are my help and my Redeemer 

Unto You, oh Lord 

I lift up my soul 

In Your loving-kindness I believe 

Surely those who wait on You 

Will never be ashamed 

All of those who call on You 

Will know the faithfulness of Your name 




This song must have spurred me on to write, as I wrote the lyrics out in my journal, and then just kept on writing while sitting there in church.  I don’t remember writing this, but found it very interesting, reading it 10 months later. It expresses my heart and how I have felt lately!!  Thought I would share:


An utter submission to His ways.
A sprawled out, head down,exhausted and limp 
Nothing left of me.  


Empty, spilled out
Core exposed, broken.
What is left?


A hearts desire to be filled only with you.


A raw, child- trust, that you will hold my exposed heart,
for you are good, and know how to make us like You.


Breaking heart, 
Shattered self,
Pride gone-no room for it.


Piece by piece you restore & redeem


Come Lord, come quickly.
Put me back together, but break me completely first.
Do your redeeming work.


Give me eyes to see
A heart that trusts


YOU are the answer, the only answer.


I am sick
I am in need
I have no healing within me


BUT-YOU are my help and my redeemer.
Come quickly, Lord.

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Cancer Journey/ HEALTH/ Spiritual

He Is Lifting My Head

No, the pathology report was not what I wanted to hear.  At all.  My hopes were up that we were at the end of this cancer journey, but I am adjusting to the knowledge that there may be much more fighting to do.  I cried.  I vented to those around me.  I felt a deep, deep sadness for my girls who may be seeing their mom weak and sick by more chemo.  
I cried out to God “REALLY?  Is this REALLY the road we are going to continue down? But Lord, I don’t want to.  I want my hair back.  I want to feel like a woman again. I want strong arms and healed wounds so I can hug my girls again.  REALLY, Lord? 
In all of this journey I have never lost His voice.  That is how very kind He has been to me.
“I AM WITH YOU”
“I AM HERE”
I woke up yesterday with such a peace and a HAPPY JOY.  Yes, it was weird.  I loved it.
I know it is all the prayers going up to heaven that has kept my head lifted and ears hearing.
Thank you.
Today I would not say I am happy.  I woke up in pain and I am weary emotionally.  But, I am not feeling lost and upset, and for that I am grateful. 
God has constantly used song to encourage me and speak to me.  I have so many to share!
The song that I posted almost a year ago here, is the one that has been playing the loudest in my brain the last couple days.  It is called “You’re Not Alone” by Meredith Andrews.

The chorus:
“you’re not alone,
 for I am here, 
let me wipe away your every tear. 
 My love, I’ve never left your side,
 I have seen you through the darkest night, 
and I’m the one who has loved you all your life.”


The song below is my song for today.  I love it, especially right at 2:18 where it goes into who He is.  So soothing for my soul.

Lift Up Your Head

Let us all as one draw near
To the One who meets us here
Let us all fall down
Before the God who welcomes us in

Lift up your head
And throw off every chain
Lift up your eyes
To the One who doesn’t change
Lift up your hands
The broken He will mend
So lift up your head

Let us all fix our gaze
On the Author of our faith
From all else we turn away
For the joy that conquers shame

Lift up your head
And throw off every chain
Lift up your eyes
To the One who doesn’t change
Lift up your hands
The broken He will mend
So lift up your head

He is Lover
He is Redeemer
He is Father
He is Friend
He is our shelter
HE IS OUR HEALER
He is the lifter of our head

Lift up your head
And throw off every chain
Lift up your eyes
To the One who doesn’t change
Lift up your hands
The broken He will mend
So lift up your head

Today my mom and sister are coming to help me pack up my Christmas decorations.  
I am sore today at my drain sites, I got them removed yesterday.  I have also had much numbness and tingling in my left arm (same arm they removed lymph nodes) especially when I type!  🙁
I have an intense burning in the left side of my chest, it gets worse at night.  It is all nerve related, I am praying it is temporary.
Thank you so much for all your love and prayers.  I know I say that a lot but I really don’t know what I would do with out your support and prayers. They make a huge difference, I am grateful.


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