What the hell just happened?

9/8/22        Day #95

    I need to preface this post by saying that I had typed this entire entry only to hit a button and it disappeared.  Right on par for this title.  Story of my life.

    Today marks 3 weeks since my double mastectomy.  I was praying and preparing for this day for months and it felt like it was taking forever to get here.  And now I am on the other side and can say it feels like a cat 5 hurricane just swept through my life.  Even though I had warning and many preparations I am here assessing the damage, taking stock of whats left, trying to pick up the broken pieces, and figuring out how to move forward.  

    We arrive on time at the hospital and check in.  I put on my "costume" and perform my last tasks for preparation.  First thing is mapping for sentinel node dissection.  So they wheel me down to Nuclear Medicine.  As the elevator doors close I catch a glimpse of my reflection in the shiny steel elevator doors.  Wheelchair, socks, gown, mask, hair net... the only part of my face showing are my eyes.  All I could think was "Is this really me?  Is this 39 year old me?  Or is this the future?"  When you are at the hospital every new room, every new nurse has to verify that you are you.  I am wearing a bracelet with a QR code and my name and birth date are displayed. The nurse welcomes me to nuc med and asks, "please verify your name and birth date".  So I do.  He drops his chart and lowers his mask and says, "wow, you are too young to be here." Yea, no shit!  He gets me on the table and preps me for the procedure.  The doc comes over.  "Please verify your name and birth date." Again, I do.  And again she stops and sighs, "Ugh, you are too young to be here."  Yea, I know! I am fascinated by this part of the day.  A nuclear dye is injected into my breast.  My body realizes its foreign and it travels to the nearest lymph node or nodes, depending on the person.  I only have 1 sentinel lymph node there.  So they take pictures and make a plan for my surgeon so he knows which node to take and test during surgery.  

    It's game time.  My anesthesiologist greets me and gives me some happy drugs.  Enough to make me happy but not enough to put me out.  I remember getting into the operating room and looking around at everyone.  He places the mask over my face and then... I'm out! 😴

    The next 24 hours are a blur.  I do remember the first thing they want me to do in my recovery room is to stand up, walk to the bathroom, and go pee.  I didn't think I could do it but I was determined to do so since it was such a milestone in the hospital postpartum. By some miracle and with the help of multiple nurses holding me up and carrying me I managed to get 'er done.  But boy was I dizzy.  I really thought I was going to end up on the floor.  After I get into bed the rest of the time I just sleep and wake up to take meds.  It's almost time for me to be discharged and my surgeon comes by to see me.  He shares the joyful news that the lymph node was clear and that he is pretty sure he got all the cancer!  He notices I'm dizzy and having some issues and offers a blood transfusion but encourages me that my body should heal on its own.  I'm young and healthy...besides that whole cancer thing.  An hour later I'm Facetiming the kiddos and feel a sudden rush of pain and pressure.  I look down and my right breast looks like a beach ball.  I call the nurse in for help.  At this point I am not taking any pain meds other than Tylenol due to having low blood pressure after surgery.  I was in such pain I ask for an Oxy.  My nurse and Neil try to undress my bandages to see whats going on and it hits me.  I'm hot.  I'm dizzy.  I feel like I could throw up.  I say "I'm going to pass out" about 3 times.  And then..... I'm out! 😴

    I don't know exactly how long I was unconscious but I remember slowly coming to.  I could hear everything- nurses yelling out numbers, machines beeping.  But I couldn't open my eyes or respond in any way.  I realize that there's a team of many nurses in the room, most who don't know me or have seen my chart.  I hear things like, "what surgery did she just have", "who is her surgeon", "we need to do a blood transfusion, what's her blood type".  What is happening?  Is this an out of body experience?  Am I dead? I finally gain the strength to let them know I'm here and I cry.  The nurse holding my hand yells, "She's here!  She's responding.  She's crying.  Oh honey it's ok.  This is scary but you will be ok."  My teary eyes open and I see a team of 6-8 nurses in the room.  Each at their own station surrounding me.  Where is Neil?  Later I learn that my blood pressure had dropped to 50/25 and they shoved Neil out of the room to sit with a Chaplain outside.  I can only imagine what he went through.  They move me to Critical Care where I am closely monitored and cared for for the next 3 days.

    After a blood transfusion and multiple units of IV fluids I am SO ready to get outta here!  My blood pressure stabilized and even though my hemoglobin numbers aren't what they want they decide to let me go.  I am so happy to go home, but also scared.  I am nervous something is going to happen at home.  Is this the new me?  Did cancer make me a hypochondriac?  My amazing parents held down the fort and kept the kids alive.  I have a power recliner, enough pillows to make Homegoods jealous, and an amazingly supportive tribe that brings me dinners, flowers, and cards galore!  Let the recovery begin. The following day I start to feel the same symptoms I felt at the hospital during my episode, minus the dizziness.  I frantically call my surgeon and he says, "I'll meet you at the E.R.  Prepare for surgery."  WHAT?!?!  I just got home!  What is happening?!?!  Neil and I grab our unpacked hospital bags and drive back to the damn hospital.  Thankfully my surgeon was able to do some things to get the blood flowing, fix my drain, and we all agree that surgery isn't necessary.  But it's clear that I have developed a hematoma.  Back home I go.

    Since then I've been home recovering.  So how are you doing? you ask. I don't exactly know how to answer that question.  I want to give you good and happy vibes.  But it just doesn't work like that.  Recovery isn't linear.  It is up and down.  All throughout the day.  I have extreme swelling and bruising, allergic reaction to the drains and tape, blisters the size of golf balls, blood blisters, itching and rash from the antibiotic, no use of my arms, tingling and numbness in my right arm, constipation (tmi I know), can only "sleep" in a semi reclined position in the recliner or on a wedge pillow, and of course the ridiculously uncomfortable expanders that feel like heavy metal bricks on my chest.  But with all that I do feel like I get a tiny bit stronger each day.  Baby steps.  I'm walking a couple miles in the morning each day.  I nap if I'm tired.  And I listen to my mother who yells at me "don't over do it"!  

    My final pathology report did come back.  No radiation needed!!! My stage is 1b.  The tumor was about the size they were anticipating.  And my wonderful surgeon got it all- clear margins!  My grade was elevated from 1 to 2 (meaning the cells grow faster).  The fascinating thing we all learned was that there was precancerous cell activity in my left breast (the non affected breast).  I am SO glad I chose the double mastectomy so I wouldn't be dealing with another tumor on the other side in a few years.  We are still waiting on the oncotype score to determine if I need chemo or not.  Funny, you would think that I don't want chemo.  And I don't!  No one wants chemo.  But a part of me feels like maybe I do?  Just in case?  You sure you got it all?  There's that new hypochondriac me.  And the last stop on this train is endocrine therapy.  My oncologist tells me I have to do it.  Because my tumor was hormone fed I have to block hormones for 10 years.  Basically a medically induced menopause.  And then naturally go through menopause.  Oh the fun.

    I've shared the news of clear margins and have gotten such love and support.  But I have to be honest.  I felt instant guilt after sharing.  That picture of me popping a bottle of champagne... I felt happy for about 15 minutes.  That's it.  And everyone is so happy for me.  And congratulating me.  And celebrating.  I want so badly to celebrate.  But I'm just not there.  The physical toll that this has taken on me... but more importantly, the mental toll this has taken... I know one day I'll be the picture perfect poster survivor you see decked out in pink.  I just don't know how long it will take for me to get there.  I do know that it's not now.  I'm still sitting here wondering, what the hell just happened?