Sunday, October 23, 2016

Recovery...if that's what you want to call it

Well, as my last insane post possibly implied, I had surgery on Monday.  Today is Sunday, and writing this is still exceptionally difficult (and being done using one finger to type one letter at a time).  I am still in the hospital, and I still feel horrific.

Do you want to hear about it?

Have you eaten recently?

So, first of all, the surgery was a huge success!!  Dr. Weber got out all the cancer.  Brian apparently made him say it 3 times.  They ended up removing half the tongue, several lymph nodes, the whole left side floor of my mouth, and my back 4 bottom teeth - but he did not have to take jawbone.  I am kinda shocked about the teeth, but they did it to make room to reconstruct and attach the new tongue, so ok I guess.  The pathology report came back and confirmed all the cancer is removed, and showed there was indeed a small cancer spot in one lymph node, so I am so glad he removed them even though it showed clear on all the tests.  Thank God.  I really don't want to do this again.  

Dr. Merclili then took over and reconstructed the floor of the mouth and the tongue.  He was able to use my forearm for the needed skin and muscle, so yay for arm-tongue!  He then took a skin graft from my thigh to cover the arm donor site.  

My arm is currently in a pressurized splint - the tubes coming out of it are to various drains for blood and fluid.  One drain on my arm goes into a machine that actually pumps the blood and fluid out.

I also have drains (these are the drain receptacles) pinned to my gown - I have 3 - gross, right?

Here is part of my skin graft site on my thigh.  It is in like a plastic bubble for healing.  Strange.

I also have a huge scar across my neck on the left side - from behind my ear to my chin.  That is where they went in to do the surgery.  

My mouth is the strangest part.  I cannot close it, and in case I wanted to even try, I have a bite blocker in my mouth, which holds my mouth open - 24/7 - for almost a week now.  Try to imagine that, please. It is horrific.  Just being real.  

Half my tongue is real and the other half is arm and called a flap.  They check my flap every hour (I get tons of great sleep, haha), and apparently it started out two different colors but now is getting more matchy and everyone raves about how much the swelling has gone down already.  It has been checking out perfectly in terms of connecting properly with the blood vessels, etc ever since the beginning, which is cool.  I feel confident it will heal really well thanks to my fabulous team of doctors.  But it freaking sucks right now.  Sucks.  I hate it.  So much pain I cannot even describe.

Finally, I have my tracheostomy, which I just got downsized yesterday, on my throat so I can breathe.  I start meeting with speech and physical therapy tomorrow to learn to talk with the trach and to start swallowing with my new tongue.  We were assuming the trach would be gone before we leave the hospital, but apparently that is wrong.  We may even still have it when we go back to MS a week after discharge, which really sucks since I didn't want the kids to see me needing/using one.  Ugh. 

You will notice there are no pictures of my scar, trach, or mouth.  I have not yet been strong enough to look at myself.  

I know.

No photos, and I had the nurses cover the mirrors for me.  I have gotten more feeling back in the last few days and got brave enough to feel around a bit with my hands.  From what I can tell, my neck is about three times its normal size, my left cheek is twice its size, and based on the looks of people when I walk the halls, I am some sort of disgusting monster.  It's cool.  Brian says I am beautiful and while super swollen, it is not that bad.  I have 2 days before discharge, so I need to learn to look at myself soon.  

Discharge also means poor Brian takes on my home care.  He had to go to a class on trach care, and while we are hoping not to have them (fingers crossed), he also had to learn to take care of my wound drains.  I do not have the words for how lucky I am to have Brian.  He has not left my side.  He waited over 12 hours during my surgery and sent updates to friends and family.  He sleeps every night on the uncomfortable fold-out chair in my room.  He is so fantastic.  All the nurses love him and tell me they love working with us because they enjoy seeing how devoted Brian is to me.  He puts cream on my lips and my real tongue side, helps translate my grunts, holds my tubes and IV poles when we go on walks, gives me sponge baths and foot massages, and lets me cry on him at least 3 times every day when I decide I can't make it anymore.  

I wrote this on my ever-present dry erase board to have him remind me to calm down and take things slowly.  This was after I freaked out and cried and he talked me off the ledge.

So here we are.  I am told by every doctor and nurse that I am healing quickly and extremely well.  Everyone reminds me that it just takes times and the swelling will go down.  I know this.  I have already gotten off the catheter and IV.  The drain pump comes off tomorrow, so my only tubes or wires will be my peg tube for meals - which is exclusively how I eat now.  

I am recovering, but it is going to take a loooong time before I feel better.  

I am ending with a photo of my precious monsters from Megan.  I miss them so much it hurts.  But, they are having such a great time with the literal community of people who have come together to help us raise them.  Oh, my heart.  Look at them.  Please let them know how much I love them and that I fight through this for them.


  1. This photo of them must be from last week- they look like angels here but definitely turned up the monster/energy by the time I got to hang with them! Thanks for sharing all this, Jeannie. We all want to know how you are, even if it's gross! (The skin graft looks gnarly). We are rooting for you! Take it slow!

  2. We love you. That's all I can come up with now. I wish I had something better to say. Maybe if I say it twice, it has more meaning? We love you.

  3. Take it slow, you are getting a little better everyday! You are doing wonderfully! I love you!

  4. Oh bless it. Thank you for writing is hard to read-and undoubtedly hard to live. You are brave and you are strong. I am sending you all the bravery in the world when you decide to look in the mirror. One day at a time....on day at a time. Love you!

  5. You are such a bad ass. We love you. Be honest and hang in there