The 4-1-1

 8/8/22         Day #64

 

    **I'd like to preface this entry by saying I'm positive I will make a mistake and say something incorrect (since my "medical training" is only 2 months strong).  But this is my interpretation.

 

    One week from Thursday!!! FINALLY!!! Surgery day is so close I can taste it.  I'm still looking over my shoulder and laying low but I feel we're in the homestretch... of this stage at least.

    Some have asked, "so what is the surgery"? And then I realized I haven't even told you!  Let me back up a few steps and start from the buffet of options and why I chose what I chose.

    When I first met with my medical oncologist she went over my biopsy results and what they call "tumor markers", which is basically a fancy term for what your specific tumor is and its characteristics.  These characteristics consist of size, grade (how fast the cells grow), stage (is it localized or has it spread), and hormone receptors.  There are 3 hormone receptors- estrogen, progesterone, and HER2.  So just because I have Invasive Lobular Carcinoma does not mean my tumor is like others who have this type.  My tumor is estrogen and progesterone positive and HER2 negative.  This means that the hormones estrogen and progesterone basically feed my tumor.  This is all very important information for my oncology team to decide what types of treatment I will need and what surgeries are suggested.  So after she explained of all this to me she told me there are basically 2 options for surgery.  I could have a lumpectomy followed by radiation or a mastectomy (other treatments are unknown after a mastectomy until after my final pathology report).  She also ordered labs and a genetic test to gather as much information as possible.  I'm still waiting on my genetic test results but given the fact that I have a known history of breast cancer, colon cancer, and a few other cancers... I would bet there's some gene that's mutated in my body!  I'm sitting in the room trying to digest all of this and she asks me, "so it's your choice.  You decide."  And behind my mask my mouth drops and I say, "how the hell do I know!  Aren't you the doctor? Tell me what to do!!!"  Thank God Neil was there with me to think logically.  We chat and ask some questions and she assures me that I don't have to make a decision immediately.  Sleep on it....as if I was really getting any sleep.

    Next stop was to see my surgeon.  He goes over it all again.  Which is great because you only remember 10% of what you hear and I'm sure that number is even lower when it's a life changing and traumatic time.  The best thing he said to me was, "do whatever is going to help you sleep at night".  Here we go again with the assumption I'm actually sleeping.  But that was so comforting.  I want to feel like whatever I do I am giving it my best shot to never be down this road again.  Recurrance is possible with either surgery but I don't know what is really living and growing in my entire breast, or even in the other breast!  The MRI picked up a tumor but my type of cancer is sneaky and cells travel. What if I only do the lumpectomy and there are other cells floating around and I didn't know.... until a couple years down the road when I get another tumor.  I want all of my tissue GONE!  And if it comes back again I can say "I did everything I could".  

    SO a double mastectomy with reconstruction is what I will have on August 18.  This means that there will be 2 surgeons operating on me at the same time.  My surgeon will be performing the double mastectomy and my plastic surgeon will be placing in expanders.  Expanders are what I've learned to be like deflated metal soccer balls.  They are uncomfortable and heavy.  They will help my skin and chest adjust and prep for reconstruction.  Or as Joanna Gaines would say "demo and rebuild".  I will have probably 4 drains that will drain fluid from my breasts and are critical to recovery.  Those I hear are the absolute worst part.  Each one is a long tube that dumps fluid into what looks like a grenade.  Everyday I will have to log the amount of fluid in each drain.  Once it slows down to a certain amount they will be removed, most likely about 2 weeks.  After my final pathology report comes back I will know if I need radiation, chemo, or more surgeries.  More surgeries may be needed if they didn't get clear margins when removing the tumor or if they need to take more lymph nodes.  During my initial surgery they will remove the sentinel lymph nodes.  A radioactive dye will be placed into my tumor prior to surgery and they will map where the dye travels to, the first couple nodes that it feeds.  Those will be removed during surgery and tested.  If there is any sign of cancer activity they will need to go back and take more.  I will have about 4-6 weeks of recovery before any next steps take place.  Fingers and toes crossed no radiation or chemo is suggested.  Then I will transition from my surgeon to my plastic surgeon who will care for me for the next few months.  Every week my deflated soccer balls will get some "air" and slowly fill.  Once I get to my desired comfort level I will have another surgery called "the exchange".  I will say sayonara to the expanders and hello to implants.  I am just amazed by what all is possible.  I am able to keep my skin and everything.  It is just the inside that will change.  I know my grandmother is clapping her hands looking down.  We've come leaps and bounds from her time as to what medicine and art is available, what is offered, and what is covered by insurance.  I'm so grateful.

    Well, that's the short version 😆 I am learning more each day and will definitely have more insight after August 18.  If you or anyone you know is dealing with this and has questions I am more than happy to chat.  I've made my list for my hospital bag, I have all my button down shirts cleaned and ready, and every pillow you can imagine.  It's game time!

**pic of Neil in the room waiting for my medical oncologist.  Pretending to be a doctor and playing clips of the "waiting room" skit from Seinfeld!  Neil puts a smile on my face even in the toughest of times