Expansion

Last Wednesday I had a busy day.  Well, busy because the two days prior to that I didn't leave the house because of the snow.  I started my day off with a shower, which is still exhausting to do, but I made it through.  I needed to do my hair because of two reasons.  1) I was going to the plastic surgeon's office . . . in Edina.  I needed to at least try to look presentable 2) because I'm going to lose it soon; I might as well cherish the last few days I have with my blond locks. 

I had a therapy appointment in the morning to work on my range of motion and to learn how to prevent lymphedema.  Lymphedema is localized fluid retention and swelling.  Because I had my lymph nodes removed my body doesn't have a way to remove the fluid and circulate it back to the blood.  I need to continually exercise my arm to make sure the lymph drains and doesn't leave me with an elephant's arm. 

Other than being slightly annoyed with the therapist--seriously, you know what I was being seen for, be prepared--the appointment went fine.  I need to do exercises to regain my range of motion in my arm, shoulder and chest.  I still can't lift my arms very high and I can't put them behind my head.  Not a way I want to be stuck forever. 

After therapy I had a lunch date with the best PA ever.  Lisa and I typically talk ever single day at least once if not more.  So to go nearly three weeks without each other is a long time.  We dined over Red Robin, YUMM and great conversation.  Two and a half hours later and a waitress who really wanted us to leave I had to get going to my plastics appointment. 

It was my first breast expansion.  Jess had counseled my on what it would feel like, but I really had no idea.  The tissue expanders were placed by Dr. K during my surgery.  They are a hard plastic with a metal (magnetic) port in them.  This port is where the further expansions will be put in. 

(image: http://neverlosespirit.blogspot.com/2010/11/lifes-been-saved-today-body-restored.html)

 

The expanders are placed under the pectoral muscle so the breast does not sag.  I have a permanent built in underwire bra.  Not too shabby, if we are tyring to find the positive in the situation. 

 

 

(image: hopkinsmedicine.org)

 

I went into see Dr. K for what would be a very quick appointment.  Dr. K took out magnet to act as a stud finder.  This finds the port in the expander and tells him where to inject the saline solution. 

 

(image: http://crapitsbreastcancer.blogspot.com/2012/06/day-166-tissue-expanders-and-pictures.html)

 

His nurse stood one one side and he stood on the other.  Each injected 50ml of saline solution.  Because I am numb I couldn't feel the needle going in at all, but I could feel my tissue and chest expanding.  It was so odd.  When I was at a different appointment someone related it to when you get your braces tightened.  You go in feeling lose and comfortable and when you leave it feels tight and a little painful.  It was really nothing compared to the past weeks, but it did require a little OTC pain medicine. 

 

I will go back next week for the next 50ml of saline.  Dr. K thinks it will take 3-6 fills to get to where I would want to be.  Size--hmm, I have no idea.  I guess I will just know when it's time to stop.  Because I will be immunocompromised from chemo we will start to spread out my fills to the day before each chemo treatment.  I will reach my stopping point far before I am done with treatment, therefore, I will get to carry these rock hard tissue expanders for about another year when I am done with radiation. 



The Drains Came OUT

On Wednesday last week I had my post operative appointment with Dr. K the plastic surgeon.  During surgery I had to Jackson-Pratt drains placed.  I had a tube coming out of my ribs under my new "breasts" on each side.  This made it impossible to sleep on my side and made any movement very uncomfortable.  I kept hearing from other people, and mostly my angel Jess, that I would feel so much better when the drains came out.  The out put of the drains had to get down to less than 30ml of fluid before I could have them removed. 

(image:http://www.notasparrowfalls.com/2011/09/jackson-pratt-jp-drains-after-double.html) 

Three times a day my mom or I had to strip the fluid from the drain tubes and empty the contents and measure them.  I had been watching the fluid slowly decrease as I had been home.  I wanted those drains out so bad. 

They had brought me to tears many days because they were so itchy and uncomfortable.  By the weekend I was down to 30ml on the left and about 45ml on the right.  By Monday I was down to 30ml for each.  I told my mom I wasn't leaving that office until he pulled those drains. 

Because of the drains I was unable to take a full shower either.  This was awful.  I wore a cami that was deemed "my suit" that zipped up the front and had a pocket inside for each drain.  Great invention, still didn't make these comfortable. 

When we got to Dr. K's office he asked to see my output log.  He looked at my 24 hour totals and decided both drains would go.  Thank the Heavens!!  With a quick clip of the suture and 1 . . .  2 . . . 3 . . . pull . . . they were out.  It was amazing how much better I felt immediately.  We went over what would happen in terms of expanding during my chemo and when we would do the next stage of reconstruction.  He gave me the lifting restriction of a gallon of milk.  Not a lot, but I can at least help carry the diaper bag now.

It Took 8 Days

Every time my dressings were changed in the hospitals, every time my mom has helped my wash up or change I haven't looked.  You know, I like my breasts.  They were a good size, nice and perky, and they fed my son for a year.  Before all of this cancer crap I had said if I was ever diagnosed with breast cancer I would cut them off and be done with it.  I guess that's what I did.  But being a woman of child bearing years I yearned for the day I could have another baby and bring him to breast to feed him. 

I know, I know.  Everyone who saw me through the first 12 months of Camden's life will laugh at that last comment.  I hated pumping.  I would lug that stupid black tote bag (thanks Medela for being discreet) down the hall to pump.  It was torture.  I hated doing it.  I hated being run by the clock which were my breasts.  But at the end of the day it was a sense of relief accomplishment when I provided enough for Camden, plus a little more most days.  Breastfeeding is an amazing bonding experience with your child.  It was one of the hardest things I have ever done, but I wanted to prove not only to myself, but to our society that a working mom (and part time student at that) could breast feed successfully for 1 whole year. 

If it wasn't my life we were talking about I would have done anything to be able to breastfeed again.  But with a BRCA 2 + diagnoses my best chance at survival was a bilateral mastectomy.  I may have cried when I saw my breast pump in the closet.  Such a love/hate relationship with that thing. 

So 8 days post op.  I still hadn't looked at my new and improved, cancer free chest.  I don't know what I was expecting.  There is a small breast mound from the tissue expanders, but no nipples.  Those are milk ducts too and that is where my cancer was growing.  My cleavage is completely numb as is the skin on the top of my breasts and under my right arm pit where they took the nodes.  Sam hadn't looked either.  We made a pact that we would do it together. 

We finally got my second suit post mastectomy camisole.  So I needed to change and get into something clean.  Sam helped me and we vowed to look together. 

Hey, not bad.  They are tiny little teenage breasts with no nipples and giant incision covered in paper sutures.  I still miss my breasts.  I had a love/hate relationship with those too, but I will grow to appreciate my new breasts.  We still laugh together that Dr. K, the plastic surgeon, was sure to tell us my new nipples would not have sensation.  Hopefully I will get past this tissue expander phase by the end of the year. 

The 3 Day Hospital Stay

I was told from the beginning I would be staying 2 or 3 nights for pain control.  This scared me.  We have calcaneus fractures or complex tibia fractures that only stay 1 night for pain control--so what kind of pain would I be in? 

The first night was hell awful.  I had the same nurse every night, Sarah.  With amazing compassion and bed side manner she greeted me about every 30 minutes when I hit the call button.  Not so easy to do when you are given t-rex's arm range of motion.  My pain was out of control and I was so nauseated.  I felt fine after surgery and when I was on my way to my room, but once my clan left, it got out of control.  I was so lethargic from anesthesia and my pain was rating 9 out of 10.  Sarah couldn't get things figured out for me.  I tried my best to stay calm, but I was writhing in bed in pain.  Between IV dilaudid, zofran, and lot of fluids the night felt like it was never ending. 

I finally got a little bit of rest, but of course was awoken by a CNA to check my vitals and empty my drains.  After surgery I was bound up tight in an ace bandage with a drain tube coming out of each side.  These drains will stay with me for nearly 2 weeks total.  I did have the tissue expanders placed by Dr. K so my chest felt like I had just worked out my pecs for about a weeks straight. 

My day nurse Cheryl came in.  Cheryl had a purpose.  She was going to get me out of bed, to the bathroom and out for a walk regardless of how crappy I felt.  There was no laying around on Cheryl's watch.  She told me I needed to talk 4 times.  She made a checklist.  Oh and I love to check things off check lists so I was bound to meet my goal.  I tried to order lunch, yep that didn't go down at all.  I was still so nauseated. 

While on a walk one time, my mom asked, "Do you remember Kristen?" My drugged up response, "of course I remember Kristen, she's my sister you fool."  Reflecting back I think she meant do I remember her coming last night.  Whoops, sorry.

Night time fell again and I was still aiming to head home on Sunday.  The night went horribly a little better.  Sarah was still in my room probably every 2 hours for pain and nausea.  She kept up with my muscle relaxer, the IV zofran and dilaudid.  I was still in quite a bit of pain.  The morning came a lot sooner this time.  My family hadn't arrived yet, but a partner of Dr. DJ came by to see me.  Because I really hadn't eaten anything since the night before surgery, I wasn't going home.  Cheryl came in to strip my drain tubes and help me out of bed for our walk.  I began to sob. 

I felt like crap, I felt like I was beaten with a baseball bat, I couldn't put my own hair up, I could barely wipe when I used the bathroom, and I have impending chemo with a toddler at home.  I was feeling sorry for myself. Cheryl sat down next to me and insured me I will do great.  She listed of statistics, she told personal anecdotes, and told me I had to pull up my boot straps and fight.  Ok Cheryl, I'll do just that.  Help me pee and let's walk. 

Dr. K was back at my room when we finished out walk.  I told him I can't feel this way anymore.  We talked about my meds and switched off the narcotics to ibuprofen.  I took a quick nap and before you know it I felt great.  I actually had something to eat that afternoon.  McDonald's french fries.  YUMM . . . . don't judge.

I didn't have to call Sarah in at all that night.  She just came in to stay on top of my meds and take vitals.  Sleep is still not comfortable, but at least I wasn't awake from pain.  The next morning I was bound and determined to get out of there.  My discharge orders were in, I just needed the final ok from Dr. DJ and I was gone. 

The pain really isn't bad.  It's just a t-rex arm rang of motion and the constant ache in my chest that is hard to deal with.  Randy the nurse pulled my IV, Dr. DJ came in to visit, and my meds were delivered.  I was set FREE!

Surgery Day

We drove to the hospital as a group.  My bag of what I thought I would need was packed.  Some sweats, a couple zip up hoodies, make up, clean under wear and socks, and my phone charger.  You know if you google labor and delivery bag you can find umpteen lists and tips.  For fun, I googled mastectomy hospital bag.  Yep, nothing of help.  I guess I would wing this one on my own.  For those interested.  I didn't use any of it while I was at the hospital, just an outfit upon discharge and my phone charger. 

We got to the hospital about a 1/2 hour early.  We were greeted by some friendly volunteers, "Welcome to Abbott Northwestern,  do you know where you are needing to be?"  Umm, no, I mean yes.  Radiology registration is where Christa the surgery scheduler told me to go.  We found our way there, guided most of the way by the greeter.  Next to the spa like Piper building, just down the hall.  We found a quiet waiting room and all nervously played on our phones.  At about 10:00, check in time 10:15, I decided to head down to radiology registration and get checked in. 

I decided to go it alone for this part.  No use towing a party of 3 behind me.  Greeted by a young man in vest he found my charts, I signed some papers and was guided down the hall to another waiting room.  I had to get a radioactive shot in my right breast.  This was going to help guide Dr. DJ to the lymph nodes she would take during surgery.  I prayed that she would stop at the sentinel node. 

I waited in the waiting room for what seemed like forever.  Texting Jess, the breast cancer angel, that I was still waiting and getting nervous.  Sam and my parents were still down the hall.  I was ushered back by a kind nurse to again undress from the waist up and get into a gown.  A quick shot of lidocaine, and then some radioactive  material and I was on my way with my plastic bag of belongings. 

We picked up my crew and went down stairs to the preoperative care center together.  Checking in again and then to wait some more.  I was starving and thirsty.  It wasn't long until they called me back.  I had to go back by myself to get prepped.    Undress fully, put on a paper gown, pee in a cup, get hooked up to an awesome heating thing.  There was this box of lights on the wall, when each person came in they would turn off their light.  I had a CRNA student try to place my IV, yea, that didn't work.  But he tried.  Another nurse came in and got an IV started right away to get my fluids started. 

The doctors came in and marked me up.  I think I stated my name and date of birth and procedure about 50 times.  Sam and my parents came back after my IV was placed.  We took a few pictures, Sam got one last peep show, and the CRNA's came in to discuss what was going to happen when I got to the OR.  The CRNA put some medicine in my IV and off we went.  I think I was out before we hit the OR. 

Once Dr. DJ was done with her part, she went out and talked with my family.  She let them know she took the sentinel node and sent it to pathology.  It came back having cancer so she took all 12 nodes under my right arm.  Dr. Kobienia was in doing his part.  This was not what we wanted to hear.  I will for sure need chemo and depending on what the final pathology says, possibly radiation. 

I finally was brought up to my room around 9:00pm.  Apparently there was an emergency on the floor and the nurses couldn't take me yet.  When I was being wheeled down the hall I heard my baby boy saying "momma."  He had finally said this just a few days before.  Sam leaned him in for a kiss.  Best thing ever.  Once in my room, this girl appeared.  It was my sister--umm, what?  I was so confused.  What was she doing here?  She is in dental hygiene school, she can't miss class!!  It was a surprise that apparently everyone knew about except me.  2nd best thing of the day. 

I don't remember who finally told me the cancer was in my nodes.  I cried.  It's never good when the cancer gets in the nodes.  I didn't want to do chemo, I didn't want to lose my hair, I didn't want to be sick.  Real cancer patients have chemo.  I wanted the surgery to fix everything. 

The Decision

After the MRI (results are in The Details) Dr. DJ had us come back to her office to talk again about surgery.  This was one week to the day where I was told I had cancer.  I sat in her office staring at her gorgeous hair, not really listening because who really listens after you are told you have cancer. 

Sam and I had talked A LOT about what each surgical option meant and what it meant to us.  I hated that we had to have this talk.  No couple married only 3 years should have this talk.  I think it was probably the most serious conversation we had ever had.  This choice could affect us forever.  We weighed all options and came to a conclusion.  I will lay out the options we are given and go through our thought process. 

Lumpectomy
This is a breast conserving surgery.  The tumor will be removed with enough clear margin--cancer free tissue--and your breast will be sewed back up.  This will leave the breast typically deformed, but you will still have your anatomical breast.  This ALWAYS requires radiation treatment for 5-6 weeks for 5 days per week. 

(Image: http://www.thecancerblog.org/blogs/archives/The-cancer-blog/1160919567-Nov-18-2006.html)
 http://ww5.komen.org/BreastCancer/Lumpectomy.html

Mastectomy
This can be done as either one sided or both.  All of the breast tissue is removed including at least your sentinel node--first lymph node--and possible all of the lymph nodes in your arm pit.  This typically does not require radiation treatment.  This is where plastics comes in.  Reconstruction can be started right after the breast tissue is removed.  Tissue expanders will be placed, so when a woman leaves the hospital she will leave with some breast mound. 
http://ww5.komen.org/BreastCancer/Mastectomy.html

After meeting with the genetic counselor and the plastic surgeon Sam and I felt we had a lot of information to go over together.  We had a lot of pros and cons to go through and we are confident in our decision.  Like most things in marriage, this was a compromise.  We needed to make sure both of our worst fears were eliminated. 

With a lumpectomy the thought of radiation never set well with me.  The plastic surgeon made it known that radiated skin couldn't be reconstructed as well.  The skin is burnt and doesn't stretch as much so adding an implant would be difficult.  I didn't want to stare at a shark bite in the mirror everyday.  Even though this would conserve my breast the chance of reoccurence is higher than mastectomy.  Being a 28 year old woman I have a lot of years for cancer to come back.  The genetic counselor asked us if we were willing to go through this process again; because with a lumpectomy you would be screened and if the cancer came back you would have to do this again. 

With a single mastectomy I would be able to preserve my left breast.  That way if we are blessed with another child after this nightmare is over I could breast feed that child.  Breastfeeding is very important to me.  I breast fed Camden for a year, I have counseled other new moms on breastfeeding issues and successes, and I hoped to one day become a lactation consultant when I was done with nursing school .  I feel strongly that breast milk is the best option for babies.  Leaving breast tissue would leave the door open for cancer to return on the left side and again having our family to go through this process again. 

Double mastectomy I feel gave me an answer to all of my fears.  The chance of reoccurence would decrease.  I wouldn't have to worry about additional screening showing up with more cancer and I wouldn't have to put my family through this again.  The reconstruction options would be the easiest.  Do both at one time and have them matching.  The bad side, I will never be able to breast feed again.  But I will not have to worry about breast cancer coming back.  

I have a lot of years left and the chances of reoccurence is very high for me.  We are still waiting on the genetic BRCA results to come back, but in short, 28 year olds don't typically get cancer.  Sam and I talked and talked and talked some more.  We don't ever want to have to do this again.  This has been hell.  This has been a nightmare.  I go to bed crying and I wake up crying.  I'm scare of uncertainty and I want to be a mother to another baby and I want to be around to be a wife, mother, daughter, and sister for as long as God has planned.  I feel like this will not defeat me.  It may define me and it will test my strength, but I will win.  We asked ourselves if the cancer did come back, what if I didn't find it so quickly? What if it comes back with a vengeance?  What if they can't operate and just take it out?

Our solution and our choice--yes OUR because my breasts are equally mine and my husband's--is to do a bilateral mastectomy with reconstruction.  If my one sacrifice is breastfeeding I will take it.  I will cry and I will be upset when I can't bring my baby to breast to feed him, but I will be alive for him and my family.  

My surgery is scheduled for February 15th.  I'm ready and I will attack this.  I have my team of surgeon's, doctors, friends, families and prayer warriors.  You are all my army behind me and together we will win.   

The Details

So here is the nitty gritty science of what we have going on. 

My tumor--although I don't like to "own" this--is a invasive ductile carcinoma.  This means the tumor started inside the milk ducts of my right breast and started to invade the outlying breast tissue.  (image: http://www.breastcancer.org/symptoms/types/idc)

Normal breast with invasive ductal carcinoma (IDC) in an enlarged cross-section of the duct Breast profile:
A Ducts
B Lobules
C Dilated section of duct to hold milk
D Nipple
E fat
F pectoralis major muscle
G Chest wall/rib cage
Enlargement
A Normal duct cell
B Ductal cancer cells breaking through the basement membrane.
C Basement membrane

The tumor is a grade II on the Nottingham scale--which as I understand means the cells are just slightly mutated.  This is NOT the stage of my cancer.  As of right now the doctors have not given a stage.  I presume this will come after the surgical pathology. 

The biopsy of the lymph tissue came back negative which is great news.  During surgery Dr. DJ will take a lymph node for pathology to determine more. 

My cancer is estrogen and progesterone postive.  This means the "food" the cancer is using to grow is my hormones.  This is actually a good thing.  This way we know where and how the cancer is growing and there is medicine to stop the hormones so the cancer doesn't have food to eat. 

My tumor is 1.7x1.3x1.5 cm.  Relatively this is a very small tumor even though it feels about the size of a bouncy ball in my chest.  (Another reminder to feel your boobs often ladies and men).

I did also have an MRI scan of both breasts to get a better picture of where the cancer was inhabiting.  I will describe more of the experience in another post.  Dr. DJ told me in the MRI they found another lump of about 7mm.  My ducts were also lined with illuminated cells.  They can't prove or disprove there is cancer here unless they were to do a biopsy, but if either area came back cancerous the right breast would be unconservable. 

At this point I don't know if I will need any additional treatment; whether it be radtiation, chemo, or medicine to help attack my cancer.  We will find out this information after my breast tissue is sent to pathology and checked out under the microscope. 

For more information on pathology reports: http://ww5.komen.org/BreastCancer/ContentsofaPathologyReport.html

As more develops I will update the status of the cancer living inside of me. 

Plastics and Genetics

After a whirlwind of my diagnoses and telling our family and friends I knew there would be more appointments to follow.  On our way on on Tuesday, Megan the CCC called and said she had set up an appointment with the Virginia Piper Cancer Center.  I would be meeting with a couple women whom are far too smart for their own good. 

I went to work on Wednesday thinking I only had one appointment.  Who was I kidding?  The plastic surgeon's office called and wanted me to be fit into Dr. K's schedule.  Dr. K who would soon learn is a fantastic surgeon was going on a mission trip to repair cleft pallets and lips in Peru for a week.  I felt really good about that because it gave me some more time to think about all of my options. 

Sam picked up me from work; I was scared just felt better with him with me in the car.  We could talk about things and absorb them together.  We drove to Dr. K's spa clinic and waited to patiently to see what he could offer us in forms of reconstruction.  Dr. K walked in with a warm face and a kind voice; ready to give me options on how to love myself in the mirror again someday. 

The options the breast surgeon Dr. DJ gave me where 1) lumpectomy with radiation; meaning removing the tumor and a little more healthy tissue followed by 5-6 weeks of radiation treatment 2) single mastectomy; the removal of the cancerous breast 3) bilateral (double) mastectomy; removal of both breasts.  With both options 2 and 3 there is an option to reconstruct the breasts. 

The options were overwhelming at best, but very informative.  In order to reconstruct a breast Dr. K would implant a tissue expander underneath the chest muscle.  He then would inject the expander with saline once a week until I reach my desired fullness.  After the breast reached the size I chose, Dr. K would then implant a soft implant.  After healing the nipple would be constructed and finally later in the office Dr. K would tattoo on the aereola. 

As Sam and I left we felt very comfortable with him.  We went to lunch and my mom called to get an update.  I lost it.  I cried in the middle of Fudruckers while waiting for my burger.  I cried because it's unfair.  My whole life crashed down in front of me.  Nursing school was on hold, our chances of having another child may not happen, and I will never breastfeed again.  It's unfair and I feel like I've been through enough.  Not having all of the answers was frustrating, but I dried my tears and hung up the phone. 

Sam then drove us to the Virginia Piper Cancer Center to meet with Shanda in genetics.  Piper, for short, is a calming tranquil clinic lit with dim light and kind faces.  Shanda met with us in a conference room and talked about the science of breast cancer genetics.  In short, women have a 1 in 8 chance of developing breast cancer.  On my dad's side of the family there are 2 women out of 5 with breast cancer.  Nearly half. 

28 year olds don't get cancer and there has to be a reason why this is happening.  Shanda recommended I don the testing for the BRCA gene.  This is the breast cancer gene.  You can test for 1 or 2.  If I were to test positive for BRCA 1 gene, being diagnosed under 30, in the next 10 years I have a nearly 60% chance of reoccurring breast cancer and a 40% chance of developing ovarian cancer. 

If not for me I will do the testing for my sister and for my children.  I feel it's important for our family to know what they are up against so they may get proper testing.  It was a very overwhelming day, but really informative.  Sam and I were feeling closer and closer to making a surgical decision on how we would first attack this monster.