Chemo Prep and Wig Woes

Well, it's been a sobering few days. 

Tuesday I went in for my chemo education hour with a nurse.  She was great.  My mom and Eric came with so they could hear everything, too.  She went over all of the side effects and how to treat each one.  After we were done I said, "So basically I have to keep everything wet."  Yes.  Behold:

-I need KY Jelly  or nose spray for my nose because it will dry out.
-I need Vicks to put on my nails and cuticles every night because my nails could flake.
-I need to put lotion on all over my body 2 times a day.
-I need chapstick for my lips.
-I need mouthwash to keep from getting sores and dry mouth.
-I need to push fluids and drink a minimum of 64 oz. a day (bonus, ice cream counts)

Additionally, I need to get plastic utensils (sorry, Mother Earth) because silverware makes all food taste like tin.  I should also get peppermints to ease my stomach. 

Tomorrow, I'm going to Meijer.  The pharmacy is going to love me. 

Then she showed us the room where they administer the chemo.  It's quite nice!  They have private rooms, semi-private rooms, and chairs just out in the open area.  They have TV's, seats that overlook a fountain, and my favorite, tables with jigsaw puzzles!!  I love me a puzzle.  They also have snacks but you can bring your own.  The atmosphere was communal.  Like a dorm, if that makes any sense. 

I met a few of the nurses and I had a feeling I would soon be buddies with them.  One of them then administered my Zoladex injection, which is the one that will protect my ovaries.  I have to get that once a month.  She put an ice pack on my stomach to numb the area and told me not to look at the needle because it's thicker than most.  I took her advice.  The ice pack helped though.

Overall, it wasn't too bad of a day, and I'm always happy to have education to prevent from filling in the blanks with negative thoughts.

...............................................................................................................................

Today was more disappointing.  I had an appointment to visit the wig boutique and get a wig.  I was happy my mom was coming along with me, and I was actually really excited for it, because I thought it'd be fun to try different looks.  I stupidly forgot one major piece of the puzzle though.  I'm less than 5% of the population of women diagnosed with breast cancer under the age of 40.  (Hello, blog title.) 

I walked in and was happy to see that the volunteer was probably around my age and had a nose ring.  (I was jealous.  I've been wanting one myself!)  She had me fill out some standard paperwork, and then gave me a small magazine and told me to look through and pick out ones I liked for her to pull, but said she couldn't promise that she'd have all of them.

I kind of smiled when I saw that each of the wigs had a girl's name.  Clever.  As I searched through and looked at each picture, I thought, "No...no...nix...that looks like a mullet...no..."  Then that's when my heart sank, and the stat reared it's ugly head.  Not many people my age are in this spot, so it would make sense that not many wigs are made for my demographic.  And no offense to my older sisters out there, but the magazine was like looking at a Golden Girls wig line. 

First she had me try on wigs for color purposes alone.  I wanted to stay with brown and I ended up going with medium brown.  It had a richer color with more dimension.  Then we went on to style.  I gave her three wigs I liked, but she only had one of them.  It was also tough because the wigs were mainly grey or blonde, and it was hard to get past the color and imagine what it would look like in a brown. 

My mom wanted me to try this one on.  We both agreed it was a no.  But now I can see what I look like with grey hair! I thought I looked like Chetna (below) from The Great British Bake Off!

I ultimately went with a wig named Melissa.  My mom thought it was a little too formal because it has curls in it, but when I put bobby pins in it, it looked nice.  I also liked that I could put it in a ponytail.  The volunteer also said I could take the wig and get it trimmed a bit to take some of the length off and trim the bang however I wanted to.  She also said that it looked a little funny because I had so much hair underneath right now, but that once my hair is gone it will fit better and not pucker at the top. 

The wig I chose as pictured in the catalogue.  As I look at it, it kind of reminds me of Mandy Moore in the early 2000's.

 

UGH.  Me trying to grin and bare it.  I can't get past the blonde. 

I figured I'd better check my demeanor.  I didn't want the volunteer to feel like I was ungrateful.  It wasn't that at all, and she was lovely.  I think I just went in with too high of expectations.  I mean, the wig is free from the American Cancer Society.  So many people work to raise money to go to things like this.  Beggars can't be choosers.  I figure, fingers crossed, it will come in the color I chose and it will look better and all come together. 

So feeling somewhat defeated, I went to pick up Julia from school.  I should have known that would make me feel better.  I got there earlier than usual, so Julia was in the middle of her snack.  One of her teachers invited me to eat snack with her and said, "Julia, why don't you show mommy where we wash our hands."  Julia was so cute.  She acted like I was a guest in her home.

She turned the water on and said, "Here, mommy.  Wash your hands first.  This is where you do that."  I washed my hands, then walked over to where the snack was and she narrated the whole time.  "Here, mommy.  First you put a napkin down on your plate."  She then scooped fruit into a bowl for me and said, "The berries are very juicy."  Then she said we got 6 Nilla Wafers, and counted them out.  Finally, she lovingly poured me a glass of water.  It was so nice to be doted on! 

So Tuesday, I report to battle.  But at least I know I have an army of supporters behind me, including my smallest one.  And for that, I am truly grateful. 

Scar

What is a scar?

A scar is a mark from your past.
It's a historical map
of the places you've hurt.

Over time they fade
But not completely
They'll always be there
A reminder of the cause

A fall
A burn
A slice

Sometimes the source may make you smile
Other times, it may cause you sorrow

Some choose to hide them
Like a shameful secret
Some choose to display them
Like a badge of honor

Regardless of the source
And regardless of the manner
The outcome is the same

You are changed

Chemo It Is

Well, what I thought from the very beginning has been confirmed.  I'll be doing chemotherapy.  It's so crazy how all this works.  You spend so long waiting, and then you hear the news and then it's go time again. 

So basically this oncotype test evaluates the genes in your tumor and essentially exposes the "personality" of your cancer.  You receive a score that tells you where you fall on the spectrum of the likelihood of a recurrence and the benefit of chemo.  If you score 18 and under, your chance of recurrence is low and the benefits of chemo are low, so you wouldn't do it.  If you score over 30, the chance of recurrence is high and chemo would reduce that risk by 40%, so it's best to do it.  If you score in the middle, that's where it gets tricky.  In studies, there weren't many women that landed in the middle range, so there wasn't enough statistical data one way or the other to determine if it was beneficial or not.  That's where I scored.  I scored a 28. 

 

So chemo it is.  I'm young, this is the second time around, and he said it was a grade 3, which meant under the microscope my "cells were angry."  However, the chemo I'll be receiving is tolerable.  It's a combination of Taxotere and Cytoxan, or TC.  Dr. U said that there's really a multitude of side effects that could happen, all of which I can't even remember right now.  It's also tough because who knows if I'll experience all of them.  He did prescribe me 3 anti-nausea medications that I'm to take prior to my first session.

The other piece I have to do ahead of time is an injection one week ahead of time to essentially "turn off" my ovaries.  This chemo has a 20-30% chance to cause infertility, but I can receive an injection once a month to preserve my ovaries and prevent infertility from happening.  I also need to schedule a time to go to the wig boutique to choose a wig. 

I'll admit, there were a few tense moments.  He explained that there's a 0.2% chance of getting leukemia 8-10 years down the road from the chemo.  He said normally any side effect with that percentage he wouldn't even mention, but that he should.  Then my dad was visibly irritated, and said, well last time they said it was a 2% chance this would come back and here we are.  Dr. U explained that anything we do is all about eliminating risk.  That wearing a seatbelt doesn't mean you won't ever die in a car accident, but it reduces the risk. 

So then we had to plan the calendar. The main side effect is extreme fatigue 2-3 days after the treatment.  So I had to choose if I wanted to be tired during the week or during the weekend.  Initially I thought I would do it during the weekend so I didn't miss a lot of work.  But then as I sat there thinking of it, if I did that, the 2 main days I get with Julia would be diminished.  I also figured, if I'm tired on Thursday or Friday, Julia would be at school and away from it all most of the day, and there's always a chance I could work from home. 

He asked if I had any time I wanted to be good for, and I told him the week before Memorial Day weekend since my mom's whole family will be in town.  So we worked around that, and took into account that I'd do treatments on Tuesdays so I was good for the weekend.  So that landed us at April 4.  I will do four treatments 3 weeks apart. 

After that, I was off to pick up Julia.  We stopped at Meijer to drop off my prescriptions and pick up some bread for dinner.  As we drove home, she asked me about my health.  Our conversation went something like this:

J: Mommy, do you still have your ouchie?
M: Yeah
J: Are you still sick?
M: Yes
J: Oh, yeah.
M: Mommy has to go to the doctors to get more medicine.  It's going to make me lose all my hair ok?
J: Oh, your ouchie is going to make you lose your hair?
M: No, the medicine I have to take will make me lose my hair.  But the medicine will get rid of my ouchie.
J: Ooooh, but it will come back.
M: Yes, you're right, my hair will grow back.  So it will be very short, but it will get longer.
J: Yeah

I wasn't planning on telling her then, or this early, but I felt like she asked and it was a natural opening.  I also feel like the more I talk to her about it in a matter-of-fact way, maybe the better she will accept it.  I was talking to one of my best friends on the phone yesterday and told her I was most likely going to need chemo (at the time it wasn't confirmed yet) and she said, "How do you talk about this so calmly?" And I said, "Because this is just my life now.  You just do it and deal with it."  I feel like that's how Julia's dealing with it, too. 

I'm sure in the next few days I'll process some more, but for today I'm grateful I have a plan.  The waiting is over.  I have answers and a timeline.  For me, that means a lot. 

Waiting

It's interesting how things you normally see all the time suddenly seem different or register differently.  The other night Julia and I were reading Oh the Places You'll Go by Dr. Seuss.  The book is typically for kids or high school graduates.  But as I was halfway through, I thought of myself as the character going through my cancer journey.  These are the pages that rang true to me.

 

 

Tomorrow I go see my oncologist.  I got my oncotype score, so we'll be talking about what it means.  I'm not ready to share it yet because I don't know 100% what the course of treatment will be with the answer.  I mean, I'm pretty sure, (like 90% sure) but I'd rather wait until I know for sure what's happening. 

 

Right now I'm living in the first picture.  The one about waiting.  I've always said the waiting is the worst part.  The what if's, the unknown.  I like knowing where my foot is going to land.  Tomorrow though, we'll know.

 



 

No More Bowls

This is going to be a fast one, and not very eloquent.  I'm crying because all of the bowls are in the dishwasher and I wanted a bowl of cereal.  Not a good place to be in. 

That's what caused my breaking point.  I'm mad, tired, stressed, crabby, short, annoyed.  I think the reason why is because I've tried so hard to overcompensate.  I do this to myself.  I hate being knocked down.  I hate being weak.  I hate having limitations put on me.  I stopped my meds on Sunday, 2 days after surgery.  I wanted to prove I didn't need them.  I went back to work on Tuesday.  People said I was either crazy or amazing.  I took pride in either.  I want to go twice as hard.  Imagine a race track, and you're running mid-stride, and you trip on a shoe lace.  You take care of business, and then you take off.  Annoyed, frustrated, and running harder in order to catch up.  That's me.  Running harder, trying to catch up.  Catch up to what, I don't know.  Normal life?

I think I'm mad today because I realized that running harder didn't help or make things go faster.  I saw Dr. G today and she asked me to lift my arm out to the side.  She asked if it hurt, I said it felt tight.  She said it should because she took a good amount of muscle out, and would be like that for a while.  She also said I had fluid in there, and hopefully it will go down and the body will absorb it on its own, but if it doesn't Dr. P will have to drain it with a needle. 

I was supposed to see Dr. P next, but he's at a wedding in Texas.  I suppose he's entitled to his own life, right?  I saw his PA and was not impressed with her.  At all.  She took off the steri-strips.  It hurt.  I looked down.  For the first time saw the incision.  It was bigger than what I had imagined.  She seemed pleased with how it was healing.  I wasn't.  She put new steri-strips on.  I'm still tender and red. 

The rest of the day was good.  I should have been happy.  But I wasn't.  I'm finally angry.  I hate having to take time out of my day to go to the hospital every week.  I'm there so often the receptionists and nurses know me when I walk in.  My life is already so hectic as it is.  Work, the house, Julia, cooking, family, friends, time for myself.  Now I have to fit this on the plate.  (Now I'm angry at myself because I sound like such an elitist, first-world, white, brat.)

I was mean.  I was short.  I yelled at Eric.  I yelled at Julia.  For little things.  Stupid things.  But I didn't know how to convey or communicate the volcano erupting inside of me.  I went upstairs and laid in bed watching the Great British Baking Show for an hour alone.  I needed to cool down so as not to cause any more damage. 

It worked a bit.  I put Julia to bed.  As I did, I told her I was sorry for being crabby and mean.  She, of course, forgave me.  We had fun doing potty, pjs, story, and prayers.  I love her. 

Then I went back to bed and felt anxious, headachey, and tired.  I took some Motrin.  That's when I thought a snack would help.  I thought cereal would be good.  That's when I discovered all of the bowls were in the dishwasher.  And that's why I am sitting here, puffy faced, eyes red, face wet. 

Genetic Test Results, More Waiting, and My Angel

Well, more good news!  I got a call from the genetics counselor and it turns out all my genetic testing came back normal!  So I don't have the Li Fraumeni Syndrome, which is a disorder that means I would have been susceptible to other various types of soft tissue cancers.  What a relief!  It feels good to just focus on this cancer battle now, instead of worrying about everything else.  The only minor negative thing that the genetic counselor mentioned was that with my tests coming back normal, it doesn't explain why I got breast cancer at such an early age.  It'd be nice to know the "why" behind it so as to prevent it from happening again, but maybe things don't always have a clear answer.  She did tell me that I should call every 2 years or so to keep up on new studies and findings.  This also means that radiation is now definitely a part of the treatment plan, because if I had Li Fraumeni Syndrome, I may not have had it.  So more pieces of the puzzle are coming together.

 

 

Yesterday was also so very nice.  My neighbor across the street was diagnosed literally a few days after I was.  She has a daughter in 5th grade that Julia ADORES.  It's a big old love fest with those two, which is great because since they are both only children.  I feel like they've adopted each other as siblings.  My neighbor had her lumpectomy on Tuesday, so Wednesday Julia and I brought dinner over, and the girls played upstairs while she and I talked.  We text nearly every day checking in with each other, but it was nice to just sit on the couch and talk in person.  We lifted our shirts and showed each other our wounds, talked about tests, treatment plans, our significant others and family members, and of course, our girls.  It was just lovely.  I would never wish this beast of a journey upon her, but I'm glad we have each other.  Please be praying for her and her daughter as well.

Finally, I got a call from Dr. G and she said that we'll have to wait about 2 weeks on the Oncotype test, which will tell us if I would benefit from chemotherapy or not.  So now I just wait, which of course is the hardest part, right?  I think for this one, this is hard for me because I love my plans.  I know that with chemo, there's a possibility that you can't be in public very much in order to lower your chances of getting sick from something else since your immune system is shot.  That bums me out.  My cousins are coming to visit from Arizona in May and we're trying to go to a Cubs game.  But now we're waiting to buy tickets in case I can't go.  I hate that we're waiting on the total number because of me.  I feel like the exciting parts of spring and summer are potentially being put on pause as I await these results. 



I WILL get there this year!

In Julia news, I am again, so grateful for her teachers.  I love that they continue to send me pictures and updates on how she's doing.  This morning was a rough go.  I think she's still adjusting to the time change, so she was not excited about getting up, and wanted to sleep more.  (I feel you, girl.)  I texted her teachers just to give them a heads up.  Today when I picked her up, her teachers said she was a little more clingy than usual (but that they were happy to give her hugs) and that she talked about me a lot. They said they were glad she's talking about it, and she's very matter-of-fact about it.

Later I asked what she said, and apparently she said that she loved me so much but that she was worried she was going to hurt my ouchie, so she was being "oh so gentle."  Another time she said, "My mom is sick you know, but she's going to be ok."  Cue tears. 

That makes my heart so deeply sad, but so deeply happy all at the same time.  I hate that at the tender age of three she is having to face this, and deal with the uncertainty of everything in a time that routine and stability is key.  I also hate that she has feelings of concern for the person that should be taking care of her, and she shouldn't wonder about whether that can be one hundred percent or not.

At the same time though, I am so unbelievably proud of her.  The fact that this girl is able to articulate her concerns and feelings about such a dynamic subject is amazing to me.  Her sense of empathy, courage, and strength leaves me in awe, and I can't help but think that if this is what she's like at the age of 3, I can't even imagine what kind of amazing woman she will turn out to be.  She is absolutely the purpose for my life.  God blessed me with this remarkably perfect angel, and I am forever grateful for her.  Thank you, Jesus. 

Recoop

This past weekend was nice because my mom came to stay and help out.  She was the best!  Julia loved having her around.  She also helped by planning the week's menu with me, and then she and Eric went shopping for it all.  Then we ended the weekend by giving Julia a bath.  Today, I took the day off and did a little work from home, but also relaxed.  Tomorrow, I will go back to work.  It'll be good to go back and get busy.  I will need a distraction for the new waiting game, which is waiting for the genetic test results and oncotype test, both of which determine the next step of treatment. 

My incision is still swollen and still hurts, but hopefully that goes down some.  I go for my follow up appointments on Friday.  Maybe by then the redness and puckering will go down.  I'm curious to see what's under those steri-strips.  I'm also trying to push a little every day to get my range of motion back.  I can't lift my arm very far, but at least I have the use of my right!  The doctor said I could drive once I was off the narcotics, so today I just went with Motrin to see if I could get through without the big guns.  I succeeded! 

Not much else to report for now, so here's a bunch of pictures of my angel! 

 

My co-workers are AMAZING!!!  A few put this basket together of cards written by various staff along with random gifts for me to open whenever I'm feeling blue.  Julia is saying, "Wooooooow!!" She wanted to open them all right away.  My favorite so far has been a package from the Cubs with a magazine, photos, and a personalized card!!!  Another co-worker gave Julia a few books.  She's tearing into them!

This one is from Julia's teacher.  Her school has been the best and super supportive.  I couldn't ask for better people to be taking care of her, especially during these times.  Her teacher has been sending extra pictures of her to me, and I even found out her best friend is the director of the Cancer Center at Edwards!  Small world!!  (Look at that beauty by the way.  I look at those fierce eyes and know she's gonna shake up the world for the better.)

 

Cuddles with grandma!!

 

 

 

My little doctor.  Yesterday she played with her doctor kit and did a whole check up on me.

 

My caretaker.  Today we cuddled and she rubbed my tummy when it was hurting.

 

 

Always end with a smile!!

Surgery Day

Yesterday I had my lumpectomy.  I had to go to Elmhurst instead of Edward Hospital, and it was pretty far from where we live, plus I had to be there by 6:30 am.  Eric's mom was already planning on coming over to spend the night so she could get Julia ready and take her to school.  So we figured since my parents live so much closer to Elmhurst, we would just stay the night there.  So at 6:00 my parents, Eric and I headed for the hospital.

I checked in and then got situated in the prep room where I changed into my gown and then they put my IV in.  After answering lots of questions the nurse had, we waited for about 1/2 an hour before someone came to take me down to the ultrasound room.  I had a nice conversation with the guy pushing my wheelchair.

Filling out paperwork!

I asked where he was from and he said he grew up in Humboldt Park, and was just there recently.  He said, "Have you ever seen the movie The Sandlot?"  Ummmm YES!  It was only one of my favorite movies growing up!  He said when he went back the park he and his friends used to play at were turned into apartments.  He said one of his friends made it to the minor leagues, but messed up his elbow so he couldn't get to the majors.  So I said, "Oh so you guys had a Bennie in the group!" And he said, "Yep, he was our Bennie."  Then he said that his friend even gave him his first mitt.  I was like, wow that really was like The Sandlot!

When we got to the room, I had to wait for the doctor for a while before I got started.  I knew I was getting a localized wire, but I honestly didn't know what that meant.  It turns out that the wire is placed in the tumor site so that the doctors know where to go.  The radiologist came in and said it was very similar to my biopsy experiences.  She and the ultrasound tech looked for the mass.  They gave me local anesthetic, and then she inserted the wire.  It was thin.  It reminded me of a thinner version of a wire for a sparkler.  When she was done, I looked down and the wire was just sticking out of me, like I had just seen an acupuncturist.   They did tape it down, and then the doctor used a red sharpie to mark where the end of the needle was and where the mass was.  Then she put her initials by the marks.  I felt like a human art project.

I got back to the prep room and then it got busy.  A nurse who was going to be in the room came to introduce herself, then Dr. P stopped by, then an anesthesiologist nurse, then Dr. G.  They had me say my goodbyes, and we were off.  The two nurses wheeled me in.  The room was extremely cold and very bright.  I scooted over to the operating table.  The nurses and I were talking, and then I could feel myself fading.  And just like that, I was out.

It turns out the surgery only lasted about 2 hours.  I was in the recovery room when I could hear people talking about me.  They talked about my history and then I heard, "She one of the nicest patients we've had in a long time."  I was still really tired and groggy, but I tried to keep my eyes open.  There were a bunch of nurses standing and talking.  I saw a woman a few beds over from me and I think I heard she had just had a C-section.  Then I thought I recognized one of the nurses.  He looked like a guy that used to be on the same sand volleyball team as me a few summers ago.  Then one of the other nurses called him by name and I thought, "Oh!  It is him!"  He came over and said, "Hey!  It's the famous Malita!"  He asked how Julia was and I responded in my delirious state.

Then I got transported to another room and they gave me juice and teddy grahams.  Eric and my parents then came in and we hung while I woke up.  They told me that Dr. G talked to them and said that the mass was about the size of a quarter, but that she took out tissue about the size of a golf ball in order to get clean margins.

Me attempting to wake up.

Eventually, I was able to stand and walk to the sink.  Once I did that I was able to change into my own clothes and then I was wheeled out to the car.  My parents went to pick up Julia, while Eric and I went to Meijer to drop off a prescription and pick up a few things.  Eric said, "Are you going to wait in the car?" I said, "What?? No!  I'm not sitting in the car!  I'll use one of those scooters."  When we got in, all the battery ones were charging, but there was a wheelchair with a basket on the front, so Eric pushed me in that.  It was kind of a cool experience.  I got to see the store from Julia's vantage point, and it made me realize that I had to give Eric very specific directions of where to go and what to get.  

Let's do this, Meijer.

We came home to flowers on the counter for my mom and I from Eric's mom.  She also made us a casserole for dinner!  She's the best.  I also took a look at the incision, and it doesn't look so pretty.  It's like the top part of my chest is higher than the lower part, and it's puckered.  I'm hoping that changes over time.  

I was definitely in and out of sleep for a while, and had to go to bed super early from what I'm used to.  Julia was really good about understanding, and has been very gentle around me, which I appreciate!  Today I woke up at 3 am and I was in a lot of pain and realized the anesthesia had definitely worn off, so I took some more pain meds.  Today I feel like my main complaint has been the pain in my mouth and throat because of the breathing tube they had in me.  I have also been sleepy, but it was a pretty chill day and my mom has helped a ton.  Hopefully tomorrow I will be even better!

Cuddling after a long day.

A Sweet Conversation and Good News

I had been thinking and praying about having a conversation with Julia for a long time.  I felt bad not telling her everything, but she knew I had "ouchies" and that I couldn't pick her up.  So after that long Tuesday, I decided I had enough information to explain it to her.  I spoke to the social worker at the hospital to get some advice on how to approach it.  She said I could use the word cancer because it doesn't have a connotation yet with her.  She said to mainly focus on her world and how that may look the same or different, and to try not to overwhelm her. 

So after some praying, I made her favorite dinner (mac and cheese) and we sat down to talk.  This is how our conversation went:

M: Julia, do you remember my ouchies and how we didn't know if I was sick or not?
J: *Nods head*
M: Well, we found out I am sick.  You know how some people have a cold, or the flu? Well mommy has cancer.
J: Ok
M: So mommy will have to go to the doctors more.
J: *eyes welling up* Well, I don't want you to go to the doctors more.
M: I know, I don't either, but they will help me feel better.
J: But the doctors hurt you.
M: I know, it might seem like it hurts, but they are actually trying to make me feel better. 
J: Ok..
M: So sometimes I might not be able to put you to bed, or play, or pick you up when I don't feel well, but daddy will help and do it, ok?
J: Ok...
M: Ok, we love you. 
J: Ok...can I watch TV?
M: Yes.



My sweet angel face after our conversation.

She brought it up again when we put her to bed, and the next morning, so she's definitely processing.  We'll just have to take it day by day.

Yesterday I saw my plastic surgeon.  They wanted me to see him so that he could take a look and make his plan.  It was like seeing an old friend since I saw him so many times 2 years ago.  When I saw him I said, "Hey! It's been a while!" He said, "Yeah, I wish we were seeing each other under different circumstances."  He has 2 kids around Julia's age so we talked about our kids and how they're doing.  Then he asked me how work was going.  I told him it was rough given what's going on in the world.  Then we sat for a good 5-10 minutes talking about politics.  Then we talked about my breasts and surgery for about 2-3 minutes.  He was about ready to leave and put his hand on the door and said, "I'll see you soon, that is if we don't die in a nuclear war first." Then we talked politics for another 5 minutes.  I left liking him even more than before.

Later in the day, I received some great news.  Dr. G called me and said, "I have good news, and you deserve it.  Both the biopsies came back benign."  WAHOOO!!!  I get to keep my lymph nodes!!!  That is huge!!  Dr. G was so sweet, she said that all the doctors feel good about this, that we've done all the tests we can, and they need to get me in there or the cancer will start to grow.  She also said my nurse navigator Jill was on vacation (which I knew) and that she would be so happy to know the results so she was going to text her.  I love that they are close with each other and are also cheering me on.  I feel like I'm a boxer, my doctors and nurses are the coaches in the corner of the boxing ring, and all my friends and family are in the audience cheering me on. 

Today I got a call from the scheduler and my surgery date is March 10.  The only downside is that I have to do it at the Elmhurst hospital instead of my home of Edward.  Now I have this sense of unknown.  I'm so comfortable and at home at Edwards.  The good thing is it's an outpatient surgery, so I won't have to stay overnight, and the recovery is only 2-3 days.  A lot shorter than a month like last time!  I'm also glad it's on a Friday so that I don't have to burn as many sick days for work.  Gotta look at all the positives!

I'm liking this one step at a time philosophy.  I thought I'd have a harder time with it, but it's working for me.  It helps to not overwhelm me.  I'm thinking I should apply this idea to other areas in my life.

Meeting with Doctors

Well, yesterday was a long day.  Longer than what I had anticipated.  Anyone who knows me knows I love a plan.  The plan was to meet with my oncologist at 8:30 and my breast surgeon at 9:45.  I wanted to be back at work by 11:00.  That's not exactly how the day went.

My parents, Eric, and my friend Stephanie all came, and I was super impressed with Dr. U.  He had no notes and came in stating all of my past history, and even knew I had a 3 year old daughter.  I also loved his witty sense of humor and he never skipped a beat.  For example, at one point he said that the chances of this happening to a mastectomy patient are really rare, so I said, "I'm such a freak."  He said, "Well, don't tell anyone, but that's what I call you outside of this room."  My mom even said she could see us being friends. 

He explained everything and said the goal was for us to be able to teach the class to someone else.  So here it goes, I'm going to try.  First we looked at the pictures from the PET Scan and saw there was nothing significant found there.  So then we looked at the pictures of my MRI.  Unfortunately, they found another spot and a lymph node that was larger than normal.  He said I would have to get an ultrasound, and if they felt it necessary, would biopsy both.  More on that later...

Then he explained that I needed to do surgery within the next 10 days to remove the lump(s).  The results from the biopsies would determine whether I needed to just do the lumps or if we also needed to remove lymph nodes.  Here is more information on lymph node removal and what that means. 

The next step would be to analyze the tumors after removal with a test called oncotype.  It analyzes the genes in the tumor and based upon the score, will determine whether chemotherapy would be beneficial or not.  If the test scores low, then chemotherapy is not proven to be beneficial and we wouldn't go with that treatment.  If the test scores high, then the chance of recurrence is also high, and chemotherapy would reduce that risk by 40%, making it beneficial.  If I score in the middle though, we would have to have a conversation because there isn't enough statistical data to support chemotherapy is beneficial or not. 

The next step, whether chemotherapy is in the plan or not, would be a combination of radiation and tamoxifen.  My cancer is estrogen-receptor-positive, and tamoxifen helps reduce the recurrence.  It's a pill taken once a day for five years.  Here are the side-effects. 

However, there's a caveat to that plan.  In the past I did genetic testing for the BRCA I and II gene, and it came back negative.  But he explained that whenever a young woman with no family history gets breast cancer, we need to look at gene mutations.  So I need to do a genetic testing panel to test for other mutations.  He's especially interested in TP53 or Li Fraumeni.  That particular gene mutation makes you susceptible to a bunch of other soft tissue cancers (brain tumors, bone cancer, etc.).  So if that came back positive, they would make sure to keep an eye out and try to prevent those other cancers from happening.  Additionally, radiation may actually cause those cancers to get going, so they would want to avoid radiation as a treatment. 

That's a LOT of information.  I am a visual person, so I asked him to draw a visual flow chart of what happens in each situation.  He was kind enough to oblige. 

 

So, that was a very educational meeting.  After he left, the genetics counselor came in and went over the genetic portion.  I got blood drawn for the test and I will receive those results in 2-3 weeks. 

 

Then it was off to my breast surgeon.  That meeting was a lot faster and was more or less a reiteration of what we had just heard.  She did say that because I already had implants, they would have to do surgery at the top of my breast where my tumors are located.  Not much I can do about it, but if it's between having a visible scar on my chest or being alive, I choose the scar.  I was set up to see my plastic surgeon on Thursday though so he can take a look and see if he needs to order any materials.  Because my muscle acts as a scaffold for my implant, if they take too much of the muscle, he needs to replace it with other material to replace it.

 



 

After that, they sent me down to get an ultrasound again.  The same ultrasound tech and nurses from a few weeks ago were there and remembered me.  I was hoping they wouldn't see anything significant and send me on my way.  That was not the case.  Eventually, the radiologist came in and he and the ultrasound tech studied the screen for a good 10 minutes.  Then it was decided I would be biopsied both in the other lump and a lymph node.  In rolled the cart. 

 

 

I laid on that table for a good hour and a half while they searched, and marked, and measured from the marks. 

 





I'll admit, I felt like I was in a live version of Grey's Anatomy.  The ultrasound tech and the radiologist didn't seem like huge fans of each other, and they couldn't really get on the same page.  That made me nervous.  I laid there and just kept thinking to myself, "Lay still, lay still, lay still, don't move."  I knew at that point I wasn't a person.  It was my lumps and lymph nodes that mattered, and it was like they were on a hunt for them.  My job was to lay perfectly still to make it as easy as possible for them. 

After they finished, he said, "Ok, we're done."  He took a deep breath and said, "That was hard, but you went through the hardest part.  I really hope that these come back benign."  Yeah, me too. 

I walked out feeling sore and frustrated.  I didn't sign up for this.  It wasn't part of the plan for the day.  I didn't have time to mentally prepare.  Afterwards, my dad and Eric wanted to go to lunch.  It was 1:00 and nobody had eaten since our day started at 8:30.  As we walked out to the parking lot, Eric said to me, "You should eat something healthy."  I snapped back at him, "Can you not tell me what to do?" He said, "We just care about you and want what's best for you."  I snapped again, "Well, I get that, but I have a lot of people telling me what to do and I'd appreciate it if I could just order what I want for lunch if that's ok with you." 

When we got to the restaurant, I apologized and tried to explain that I just feel out of control and that so much is being decided for me.  I just didn't want to be directed to do yet another thing.  Needless to say, this is how I felt at the end of the day:

The lesson I learned was that I need to suppress my urge to plan and know the timeline.  Dr. U said that with these things you have to take it step by step.  It's impossible to plan the long-term.  So, that's my personal goal now.  To take things day by day and live in the present.  That was something I was working on anyway before all of this, but it's a lesson I'm having to learn at a faster rate now.  I didn't get my biopsy results today, so tomorrow I should get the call.  I also have to see my plastic surgeon tomorrow.  But, that's tomorrow.  Live in the present.