Post Surgery Update

I had intended to update the blog the night before the surgery, but I got too busy and it got too late and so it didn't happen.  I will try to give the play-by-play, since that is how I prefer to hear stories.  Sorry to those of you who are more big picture people.  I'll go ahead and cut to the chase for you....I'm fine.  :)

My alarm went off at 4:45 last Wednesday morning, and though I didn't really have much to do, I wanted to be able to move around without being in a rush and make sure Chris had what he needed.  I took a pretty long shower, knowing that it was going to be my last in several days.  I was really bummed that I couldn't have my cup of coffee, but I knew better than to break a rule like that (no drinking or eating after midnight).  I was instructed to remove all nail polish, jewelry, makeup, piercings, etc. before arrival at the hospital, and to wear something comfortable.   It doesn't take long to get ready under those instructions!  Right before we left at 5:30, I went ahead and took an Ativan with the tiniest swig of water (which I had specific permission from the anesthesiologist to do.)  The Ativan helps me calm down, shake less and just mellow out a little.  I got to use my new Vera Bradley duffel bag for my robe and slippers, change of clothes for Chris, etc., but I made sure that we had another bag with snacks for Chris, my lip balm, glasses case, current prescriptions, etc.  I wore The Ariel because as usual, she was way faster to deal with.  And I couldn't resist a good swipe of face powder and tinted lip gloss to face the day......I was prepared to defend my position if asked (how those items don't really count as "real make up").

Wearing comfy clothes, no food and no coffee, but feeling ready to get this show on the road!

 
We checked in a the McDonnell Surgical Center right at 6:00AM, and after a little bit of paperwork, we were called back to get going.  Chris helped me change into the lovely hospital gown, this time I was told to open in the back (versus the last several appointments where it needed to open in the front) , and I had to put on the XXL no slip hospital socks.  I was pretty sure I already knew the answer, but I had to ask anyway.  Was I going to be allowed to wear my wig into surgery, or no?  The nurse said I could wear it a little longer, but then take it off right before surgery, as we were moving into the OR.  I thought.....this is silly....I am about to get a bilateral mastectomy....i need to not worry about the wig.  So I took it off and put it in the green plastic bag that held my other clothing for Chris to keep up with.  I had brought my favorite sleeping cap along for "just in case" and honestly, I was glad to get the wig off and to just be comfortable.   So, during this post you will get to see your first glimpse of me without some form of hair, unless you are one of the "lucky few" who has been there for some procedure or another.  :)

I was in the same place where they did pre-op before my lumpectomy, so I liked that little bit of familiarity.  I was put in a comfy bed with warm covers, and all of the nurses began coming around with introductions.  Muriel was the main check in nurse who had to get my IV started, but after she finished her basic questions, the anesthesiologist came in to talk and he was a huge distraction to me while Muriel started the IV.  I really didn't like where she was doing it.....on the top of my hand (vs. in the crook of my elbow), but she said this would allow a lot more range of motion for my arm/hand.  She sprayed it (I think) with a numbing agent and I didn't feel a thing when she started the IV.   Big yay for that.  At that point, I was sort of thinking that the hardest part is over.  I forgot to mention....Chris had to leave before they started the IV.  I was under the impression at the time that he was going to come back before the surgery, but according to him he never did.

I was warm and comfy, not really even missing my coffee.  Ready to get going so that the dread would go away.

After Dr. Gilli and his assistant explained the nerve block they would use, then Dr. Barber, my general surgeon, came in and talked with me, said he has been praying for me and he put his initials in Sharpie on both my right and left shoulders, with a 'yes,' as a reminder to him during surgery that both breasts are a yes.  I had to explain in my own words to another nurse what I thought was happening that day, just to make sure that I really WAS aware of what was about to happen and to ensure no surprises.   Finally, Dr. Woods, my plastic surgeon, came in (I heard the nurses referring to them as the dynamic duo...that made me smile).  Dr. Woods had me hang my feet off the side of the bed and he drew all over my chest, freestyle.  I attempted to joke with him about how this must be the "art" part of the science.  I think he laughed.  Not sure.  We revisited the decision to have my nipples removed, but spare the aureola (skin around the nipple).  This was an easy decision since my cancer was in the milk ducts, and even though we had theoretically already gotten all of the Stage I and Stage II cancer, there remained a lot of Stage 0 cancer (in situ) in my milk ducts that could at any time "activate" and start growing to a more scary cancer, so again....easy decision. 

BB: Bill Barber, my surgeon.  You can see my port in the picture, too.  The port needs to stay because my Herceptin infusions will continue every three weeks until I have received it a full year, so until end of September 2015.

At this point I had the blood pressure cuff attached to my left arm and it was squeezing every few minutes.  For some reason, every time it squeezed it hurt my IV.  The nurses speculated that maybe it was just a small vein, and it was a pretty large needle. Of course I also had the little finger cuff on my finger that I think was measuring oxygen levels.  Then they put the compression cuffs on both of my legs, so that they would be squeezed throughout surgery to prevent blood clots.  They joked about getting the full spa treatment and I remember liking the calf squeezing cuffs. 

Finally they were ready to roll me out of there and to the OR.  The anesthesiologist had given me at least two shots of "feel good" med in my IV at this point (that burned like crazy in my vein).  I had imagined being really emotional rolling away to the OR, but I wasn't.  I remember it felt like a long "roll" to the OR.  I was trying to read the signs along the way.  I remember passing Labor and Delivery and thinking "awwwwww......babies....wish I could see the babies......." then it felt like we went through so many double metal doors that said Do Not Enter.  Finally, we arrived and the OR was what I imagined.....super, super bright white.  I had to shift from the rolling bed I was on to the bed in the OR.  The nurse told me to just inch my bottom over a little at a time, then I had to assume the T position just like for the C sections.  My arms were spread out and I believe strapped down on the two little sections of the bed/table that jut out for your arms.  And really, that is the last thing I remember.  I still feel a little annoyed that I don't have any more memory from the OR, and that I didn't have the conversation about, "now we're about to start, let's count backwards," etc.   Maybe I had the conversation and I just don't remember it.  It is on my mental list of things to ask, anyway.  Chris thinks it's silly that I care at all, but I can't help it, I do.

Here I am in back in the Recovery Room, where I was in and out of it for a long time.  Note the nausea bag near my head.  and the lovely silver shower cap that they had already removed from my head.

 The next thing I know, I am whispering for Chris.  I was whispering because my throat was completely dry...as in no liquid at all.  I had had a tube down my throat for 5 hours.  I still have some oxygen going in my nose in this pic if you look closely.  From what I understood I had been asking for Chris from the time I came to, and I was so persistent with it that they went ahead and brought him back to me before they normally would have.  Whoops.  I don't like to be thought of as that patient who won't stop talking, but I couldn't have been that annoying, right?  I mean, I could barely hear my own voice.  Once I knew he was there I felt a lot better. At least mentally.  I couldn't believe it was over.  He was allowed to give me some ice chips, and that helped me so much.  Thank God for those ice chips. 

I think this must be before they put my glasses back on my face.  Wow - I look really out of it.  Like I said, lots of drugs.

 I was really pretty delirious during this time, and from what I have pieced together, I came out of the surgery in a good amount of pain.  In my uneducated opinion, it feels like something didn't go quite right with the pain management.  Chris said they had to keep giving me additional shots of stuff to ease my pain.  And I was nauseated.  So they were giving me medicine for that.  And I do remember one episode of a male nurse coming around and asking if I could wiggle my toes, which I could not.  I sort of panicked about that (in hindsight...I have no good explanation for panicking, but I actually remember this).  I began hyperventilating, which apparently is becoming my specialty.  Again...so embarrassing, but in the moment I was doing my best.  The nurse talked me through trying to calm down (with Chris' help) and gave me more drugs that knocked me out.  So, the surgery had actually gotten underway at about 8:30AM, was over by about 1:30 or so, but we didn't get to our room until close to 6:00PM.  I believe the "delay" was mainly trying to get my pain/nausea under control and having me calm down and get "comfortable."  We went through the usual chills that I get (teeth chattering, body shaking) and then my blood pressure was really, really low. 

I am just keeping it real here, folks.  I was super nauseated for a while, but luckily I respond well to the nausea medication. 

Finally, I felt okay and we moved to our real room.  Chris filled me in on what had happened on the "outside" while I was under.  My precious friends Julie and Johanna came by to keep Chris company, and he said that it just worked out really well that there was a little overlap between visitors, but that the timing was really great so he could get a little one-on-one time, then a bit of the intro/overlap  kind of visit.  I was so thankful that his buddies Josh, Jason and Scott were able to come by and hang with him a bit also.  He said that he had already started pacing the waiting room before my friends arrived, so once again, I so appreciate friends taking my not-so-subtle hints to stop by for a few minutes to break up his morning of waiting.  After a couple of hours the general surgeon came out and said that his part was finished and that I had done great.  After another 2 1/2 hours or so the plastic surgeon came out and said the same thing.  Chris was relieved.  No complications.  Nothing unforeseen.  Good news.  Everything from both breasts was sent off to get tested and Dr. Barber had taken the lower fat pad with lymph nodes in it under my right arm.  The pathology would tell how many nodes were removed, along with the results.  The pathology results were expected in 3-4 business days. 

But, I will go ahead and say....we received a phone call at home on Friday evening right at 6:30PM from Dr. Barber.  My pathology was in and ALL OF THE RESULTS WERE CLEAN!!!  They had ended up with 12 nodes out from under my right arm, and 100% of them were clear and healthy.  The same with the breast tissue.  I was so impressed and happy that they went ahead and called us on a Friday evening.  That spoke volumes to me.  And remember, the reason we were doing the mastectomy in the first place is because I did not have good margins of healthy tissue after the lumpectomy, and during the lumpectomy they found a bunch of Grade 0 cancer that was only going to cause problems later on.  This was such a relief.  And while we were SO DISAPPOINTED originally to find out the cancer had spread into my sentinel lymph node (meaning it had entered my bloodstream, making the chemo decision a no-brainer), I am SO HAPPY that none of my other nodes have had cancer in them.  That means that that one sentinel node where we found the tumor was doing its job....filtering out the "junk" that does not belong.  And it looks like the cancer stopped there as far as tumors go, and any cancer that may have been left "floating" in my lymphatic fluids or blood should have been killed by the chemo.  So, to the best of my ability, I believe that I am cancer free at this moment in time, and I hope and pray that this will remain true.

The kiddos had wanted to visit me in the hospital, and we debated whether or not to do it, but Caroline was quite persuasive, and as it turns out, had had a pretty rough day at school.  I basically said, yes, I think we need to see each other after the days that we have had.  She had been allowed to use her teacher's phone to call Daddy while we were in the recovery room, and she had been crying off and on all morning at school.  We waited for rush hour to die down a bit, but then Chris went to go pick up the kiddos for a quick visit, and my mom surprised me by coming along for the visit as well.  They both handled it well, with my girl being a bit emotional, but I still think it was good for her to see that I was all right and in good spirits.  Jonathan was basically fascinated by all the hospital gadgets and we couldn't keep up with all of his questions.

First Night - visit from my beloved family.  This was after the morphine.

  Prior to their arrival, I had to use the restroom for the first time since surgery, and I was DREADING having to get up and out of the bed.  But I had been given very strict instructions not to even think about trying it on my own, or even with my husband, and y'all know I'm a rule follower.  :)  So I slowly angled my arm around to the nurse call button on the side of the bed (this was before we had figured out there was a "remote" dangling next to the bed that had all of the same buttons.  It took two nurses, and it helped to push the bed into its best upright position first, but it HURT LIKE HADES to put any pressure on my arm and through my chest (which you typically do when you are getting into and out of bed, sitting down, breathing, etc.)  We made it to the bathroom, IV pole and all, and I was reminded of my time spent there for childbirth....urinating into the bowl inside the toilet bowl, with little measure marks on it.  The last bit of my dignity that I might have been clinging onto was swept away.....it was officially gone.  I was now a hospital patient, with a gown fully open in the back that no one seemed to care about, sitting on the toilet with two people staring at me, freezing and wanting to crawl back into bed except for the fact it seemed so far away.  Moving my arms in the direction of toilet paper brought fresh rounds of searing pain, and by the time we made it back to the bed one of the nurses had ordered a shot of morphine, and all I could do was whisper thank you.  I slept until the kiddos arrived and was feeling no pain by then, so at least the timing on that worked out.  

Poor Chris had to take the kids and my mom back to the house, then return to the hospital since he wanted to stay with me.  That had been the plan.  At least he was able to grab some dinner from home....dinner another sweet friend had provided.  You know how nights in the hospital typically go...lots of interruptions to check vitals and then I kept having to use the bathroom.  I had been pumped with plain IV fluids all day, then they were giving me something with a little energy in it (I thought they called it sugar water, but I'm really not sure), then they started me on IV antibiotics.  Anyway, once I was allowed to drink water I drank a TON because I could NOT get that dry mouth feeling to go away.  I was thankful I remembered to bring my saline nose spray and good lip balm because I used them constantly.  And the night nurse was great, she was very patient every time I called her to use the bathroom and it really did get better after that first time.  It still hurt a lot, but I was learning how to maneuver and we were figuring out how to get my pain under real control.

The chair folded out flat into some semblance of a bed.  But Chris is 6'5" and it was most definitely not made for anyone near his size.  Poor guy.  I was thankful he was there, though, and I believe he was where he needed to be as well. 

    The next morning both surgeons came to visit, and I was expecting to go home that day.  Dr. Woods, the plastic surgeon, is my primary at this point.  He asked a few questions, examined me and had me get up.  He wanted to know how much walking I had done.  I told him only to the bathroom a few times through the night.  I was still on IV pain medication, and that was the deciding factor.  He said I needed to get up and walk around the halls, and get switched to oral pain med before he would let me go.   Dr. Woods had surgery scheduled that day up until at least 4:00, but he planned to come back and check on me to give the final thumbs up or thumbs down on whether I was going home that day.  Our job was to learn how to deal with the "drains" and figure out the pain medicine.  We started with my old friend Percocet (from the Shingles days). I had learned a little about drains from reading about this procedure but mainly from my friend Kati, who had the same procedure the prior year.  I ended up with 2 drains on my right side and 3 on my left.  Any time tissue is removed from the body, the body wants to fill that space with fluid...it's a natural response.  However, filling with fluid can get really painful (I experienced this after the lumpectomy when I had to go in and get some fluid suctioned off that under my arm because the pressure was causing so much pain.).  So, drains are put in place to allow the fluid that your body sends to the surgical site to "drain" out through a long plastic tube and into a little plastic bottle.  If you are easily grossed out by blood and goo, please skip the next picture.  I didn't realize it beforehand, but a separate little incision was made under each arm where the drain tubes come out.  The tubes go inside my body about 6 inches.  That seems far to me!  Each tube goes to a different place inside.  I have an extra tube on the right side because that's where I had the nodes removed. 

Chris had a couple of lessons in "milking" the drains to make sure there were no blood clots.  This has to be done every 8 hours, even now, a week later. 

My right side, with the drains safety pinned to my hospital gown.  This was very important because these tubes are sewn into my body, and if they are left to hang, the weight of them not only hurts but can damage the incision.

Chris has his own box of gloves and little alcohol wipes that he uses to milk and empty the drains.  It is important to push each drain in after emptying it, to create a little vacuum that helps pull the fluid out of my body and into the drain.  He has a chart that he keeps of the amount of fluid that comes out of each.  I see Dr. Woods again tomorrow (Thursday) and I am really hoping I can get the drains removed...if not all then some.  Once again, thank goodness for my friend Kati, who is letting me use her "drain belt" from last year.  Instead of pinning the drains to your pajamas, you can pin them to a simple belt, and it's a lifesaver in the shower and, for me, it just feels better to have the drains attached to the belt that I wear low on my hips, versus flopping around my shirt. 

We walked around the hospital as instructed on Thursday, but I was denied permission to come home.  It was the right call, I am sure.  We were having a little trouble getting the pain pills right.  We switched to a different codeine-type pain pill and that seemed to work better with a little less nausea.  I insisted that Chris spend the night at home the second night.  I was so very tired, I knew all I wanted was to sleep.  My blood pressure had come back up finally into normal range.  He was so exhausted from the night before...he needed the rest as much as I did.  So, that is what we did and it all went well.  He was back first thing in the morning, and Dr. Woods gave us permission to leave after breakfast and before lunch.   Yay - we were discharged!

Wearing same outfit I wore to the hospital, but I only had it on for about an hour the first time!  And no, I had absolutely no energy to deal with thoughts of a wig, contacts or makeup.  Happy to be going home!

I have more to write about being home for the last week, but that will have to come later.  I am very tired and my arms are aching.  Thank you for all of the prayers, encouragement and support.  I will write more before too long!  Good Night!