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.