Surgery #38

Well, another one over with.  Surgery #38 went well and I am happy to report there was enough skin to get what needed to be done, done.  The surgery was slated for about 2.5 hours but ended up taking about another hour.  It wasn't as simple as he thought it would be.  Waking up from this surgery was also not too pleasant.  I was waking up just as they were taking the breathing tube out and they were not gentle so my throat was pretty sore for a couple days.  The OBC was all full up so I stayed in the main part of the hospital.  It was all right.  The room didn't feel like home like the OBC does and the people didn't know me there and I didn't know them so the first night was a little rough.  Even more so because I was in a great deal of pain that first night that I couldn't stop from breaking down it hurt so bad.  But my night nurse was pretty good in staying on top of it and getting me my pain meds every three hours so I felt a little better come Saturday morning.  Most of Saturday I was still in a lot of pain but I had the opportunity to go home Sunday if I was able to get off the IV breakthrough pain meds so I took my last breakthrough IV pain medicine Saturday afternoon and tried to manage with just PO.

I got to see my original burn doctor Saturday with some of the interns that were in on my surgery so that was nice.  I always love seeing Dr. Pulito and he always stays in touch with me and with Garrett so he's in the know of what's going on with me.  He always gives me hugs and squeezes my hands lovingly.  He also came to see me Sunday morning before I left.  Such a sweet man.  I didn't see Garrett at all during my stay, just his interns.  But he did call Sunday morning as they were working on my discharge orders and talked to me.  Then around noon, the orders were done, I had my prescriptions in hand, the bags were taken down to the car and mom and I were ready to go.

I feel a lot better not having that horrid, giant tissue expander in my shoulder but it's been replaced with pain from the surgery.

There was quite a bit of scar tissue and contracture to clean out and he found that my right side sternocleidomastoid muscle was shortened significantly due to the contractures in the right side of my neck.  The sternocleidomastoid muscle is a muscle in your neck that runs from just behind the ear, over the clavicle and attaches to the sternum.

As defined by wikipedia:

In human anatomy, the sternocleidomastoid muscle, also known as the sternomastoid and commonly abbreviated as SCM, is a paired muscle in the superficial layers of the anterior portion of the neck.  When acting together it flexes the neck and extends the head.  When acting alone it rotates to the opposite side and slightly flexes to the same side.

It looks like this:

To help release the tightness of my SCM he cut some fibers in the muscle and hopefully with some stretching therapy it will elongate.  So the snipping of the fibers in that muscle have added on some more pain but in general, recovery should be quicker as this was a flap so there is no donor or graft site.  I will have to wear that dreadful collar when the flap is more healed to help keep any contractures from forming in that flap area as well as stretching therapy.  I can already feel a difference though.  My right eye and mouth do not pull like they did so that is a really great accomplishment from this surgery.  It feels a lot more flexible though it is still sore and swollen but I can tell already that despite how awful the tissue expander was, it helped enormously.

Last Tissue Expansion Before Surgery

 (From the front)

 (From the back)

(From the side.  Yeah, it's that big.)

Last night was my last tissue expansion in my fifth expander prior to my 38th surgery, which is next Friday.  And we went for it.  Since our visit to the doctor in January we were putting in 100 cc's of solution but last night we put in 20 extra cc's to really get this thing stretched so there will hopefully be enough skin to get what needs to be done, done.  My last expanders, which were in my shoulder blades, only had enough skin to make it halfway around my neck, which is where the scar line is and where the contractures formed to cause this current problem.  My left side has done well with z-plasty's.  But my right side has been a nightmare so thus the current tissue expander - tissue expander #5.  I have been in a great deal of pain and very uncomfortable since last night.  So uncomfortable that I have been awake since 3:30am this morning because I just couldn't get comfortable and I needed to relieve the pain with some pain meds and a hot rice bag.

A Bad Night Of Withdrawals

I've been up all night with morphine withdrawals.  Since I have been completely off the morphine there have been good and bad days.  And yesterday was a bad day and last night it only got worse.  During the day yesterday I was irritable and tired and then last night I was having physical withdrawals keeping me from falling asleep which I so desperately just wanted to sleep cause I'm so tired.  Not to mention my mind is swarming with broken thoughts that I can't shut off.  Now it is early, early morning, like 3am, and I'm up because the physical withdrawals have kept me from sleep all night.  Oh my God, how horrible these withdrawals can be.  It's going to create another bad day because I got no sleep last night.  I've been off the morphine about two weeks and I'm still going through withdrawals.  What a demon of a drug.

"But there are dreams that cannot be, and there are storms we cannot weather.  I had a dream my life would be so different from this hell I'm living...Now life has killed the dream, I dream."

That famous musical line runs through my head so often in those broken thoughts I spoke of earlier.  I wonder if my dreams will ever be.  I wonder if my dreams will be one of those dreams that cannot be and I wonder if I'll be able to weather this shit storm I've been living.  I once had a dream that my life would be so very different from this hell that I'm living.  I dreamed of love and success.  But life had other plans and so has killed the dream I dreamed.  Now I just hope to get through each day.  What kind of life is that?  It certainly wasn't the one I used to live.  I never felt more alive walking through the streets of Manhattan., wherever I was going, but especially when I was going to an audition.  I don't feel alive anymore.  Well...

A Surprise! Birthday Party

On Saturday night I got quite a surprise.  And a most wonderful surprise at that.  I messaged my dear friend Jessie early in the week last week to see if she wanted to try and get together since we hadn't seen each other for awhile.  She said she had some time the following week (this week) but not till Saturday.  I was skeptical about doing something on Saturday because that's the day we fill my expander and I don't feel well afterwards for the whole day and often into the next couple days.  But I had not seen her in so long that I really wanted to make it.  Plus I thought I could bring my big brother along and have him meet Jessie and her husband and have some fun together.

So sometime during the day on Saturday I tell my mom of my plans of going to Jessie's and taking Jake with me.  I'm not feeling good at all from my expansion but I just gotta push through so I can see her.  Later that evening my mom suddenly says, "Well, maybe dad and I will go to Dairy Queen and get a treat while you guys are gone."  I suspect nothing.  About 6:45 rolls around and her and my dad take off, supposedly to Dairy Queen, but again, I think nothing of it.  Jake and I are expected at Jessie's at 7:00 but we're running a little late.  Finally we arrive, about 10 minutes late, and I knock on the door.

Jessie comes to answer the door and I give her a hug, say hello and walk into the living room where I see some of my dearest friends and mom and dad standing on the other side of the living room and then, "SURPRISE!"  I. Am. Definitely. Surprised.  I had no clue, no idea.  Jessie had even gotten my best friend, Corrie, who lives in Seattle, on Skype for when I walked in.  So she was even "there" in a way to surprise me.  I couldn't believe the work Jessie had done to do this for me.  There were decorations, themed in red and white to represent the colors of the White Stripes, my favorite band ever.  AND for those who lived out of town and couldn't be there, including Jack himself ;) she had made cardboard cutouts on popsicle sticks with the face of the person on the cardboard.  That was so clever.  All the food was red and white.  It was just incredible.

My dearest friends from in town were there and if they were out of town, they were there on the cardboard cutouts....or on Skype, like my best friend.  And my family - my mom, dad and brother - were there to celebrate as well.  I've never really had a surprise party before.  I kind of had one last year but this was a lot more people and a theme.  A friend who is out of town in Montana on a sabbatical even recorded a message for me!  It was so sweet.  The effort that went into this surprise party was amazing!

After I had hugged everyone and said hello, I settled in and we all started snacking on the delicious food and talking to one another.  I was so happy to see everyone there, took some fun pictures and did a lot of laughing.  Best of all was how loved everyone made me feel.  I was just showered with love and I truly appreciated it.  I really do have a wonderful family and the best, BEST friends.  It was such a fun night.  I got to have a lot of people I love dearly all in one room together with me, eat good food, have hearty laughs, be silly, open presents and listen to good music (Jack White of course).  Someone finally threw me a surprise party.  I've always been throwing parties for other people and someone finally did it for me.  Thank you to my family and thank you to my awesome friends who put in a lot of effort to do this and be there for me.  You are all just awesome and near and dear to my heart.  I love you.

Those who live out of town and couldn't be there.

Top, from left to right: Jack, Corrie - my best friend

Bottom, from left to right:  Clay, Jen, Jessa

Turning 31

A person taking stock in middle age is like an artist or composer looking at an unfinished work; but whereas the composer and painter can erase some of their past efforts, we cannot.  We are stuck with what we have lived through.  The trick is to finish it with a sense of design and a flourish rather than to patch up the holes or merely to add new patches to it.  ~Harry S. Broudy

I know I am not quite to middle age but it can still apply.  I am 31 today.  I think it feels worse than 30.  Thirty was a marker.  But thirty-one just feels....lame and older.  I still live at home, though it is not by choice I know, but still, I live at home and I'm 31.  When I was 23 I really felt like my life had started because I had really moved out.  I had moved to New York City.  By myself.  I was really responsible for myself and my life then.  And then I had to come home for a break at age 26 when I was a little messed up about my life and my accident happened.  My accident happened and halted everything.  Almost making everything go backwards.  I was injured severely, almost died, and back at home being taken care of.  And now, just a couple months shy of five years later, I am still at home going through surgeries and recovery.  I have a love/hate relationship with my life when I look back and take stock of it.  I love some of the things I have done and been brave with and I also hate some of the stupid things I did.  But maybe I don't believe in mistakes anymore.  Because mistakes make us who we are.  I can't erase anything I've done in my past.  But I can enjoy the memories of the good times and learn from the bad.  And what I can do is work on finishing with a design or flourish instead of patching up holes or adding patches as Harry Broudy said.  I may still live at home and going through surgeries and recovery but I don't see why I can't start now.  There is only excuses to wait.

I have been hung up on the past these last five years since the accident.  What was, what I was able to do, what I used to look like, what I used to do, who I used to be.  But I promised myself this year that I was going to move forward and stop all that.  Some of it can be used in a constructive way if done so properly, which is like walking a fine line between using it constructively to move forward and getting deeply depressed.  But I agree so strongly with Soren Kierkegaard when he said, "Life can only be understood backwards, but must be lived forwards."  There is so much we can learn and understand from our pasts but it is not to be lived in, only reflected upon to make us better people and then we must continue forward.  We must move forward aiming to finish with a sense of design or flourish.  We can't change our pasts.  But we can do something about our present and future.

I am 31 today.  Happy birthday to me.  I have a bit of a new wish in mind this year for when I blow out my candles.  Nope, can't tell you.  Or it won't come true ;)

Off Of Morphine!

I never thought this day would come.  I am, after five years of taking it everyday, finally off morphine.  Garrett has been wanting me to try and get off of it for quite some time because it was always so hard to control my pain in the hospital after surgeries because I was so tolerant to most all the pain medications.  Then he laid off of it because my PCP told him there was no reason for me to go through the torture of getting off such a strong opiate if I was just going to be going back into surgery again and again and needing it.  So that plan went away for about a year and then when I went in for a post op appointment in November 2012 after a couple surgeries, Garrett brought it up again that he really wanted me to try and get off the morphine.  He suggested just doing it a little at a time by reducing the amount 10mg's at a time for a couple weeks and if I felt OK, to reduce 10mg's again for a couple more weeks and so on.  So my mom and I decided we'd try to do it once and for all after my December surgery.

So since we only had 30mg and 15mg tablets, we would have to reduce 15mg's at a time since we couldn't cut them in half because they're extended release tablets.  I was nervous, to say the least.  I'd gone through the withdrawals a couple times when I forgot to take my pills and it was hell.  Absolute hell.  Now I was taking 45mg's three times a day.  So first we reduced the lunch time morphine right away and quickly cause I seemed to do OK without that lunch dose.  Then it was on to the morning and evening doses.  We reduced the morning dose first by 15mg's and 15 more a week later keeping the evening dose the same.  Then we tackled the evening dose by reducing 15mg's.  I started getting withdrawals now.  I was cranky and just felt like shit.  Just felt, well, like I needed the drug.  My stomach was upset, I got clammy, headaches, irritable.  But it lasted only a few days and I felt better so we started reducing again.  And once again, I felt the withdrawals and had a couple very rough nights where I had to take additional morphine in the middle of the night to stop the withdrawals and just get some sleep, even if it was only an hour or two.

And now, a month and a half later, I went my first day without any morphine yesterday.  And I made it through without any problems, even the night.  What a feeling!  I am off morphine!  After five years of taking it faithfully everyday, three times a day I am off it!  I never thought I would get off the morphine while still in surgeries and I never thought I would be able to do it the way that I did, by just reducing slowly without any other drug to counteract the withdrawals.  And in just a month and a half!  It has only been a day being totally off so I may still have some withdrawal problems in the days to come but I made it through my first day and night.  And I feel good about that.  I am still on short acting pain medications but I don't seem to ever have a problem stopping those when I don't need them.  It was the long acting morphine I had such a problem with.  But no more.  It's done.  And I don't know what I'm going to do when I have surgery again but I cannot let them give me morphine again after all I've gone through to get off of it.  So I'll have to try and stick to short acting pain medications.

Being off the morphine may help a couple things, too.  Like my weight since it got in the way of my weight loss attempts and better mood.  Long term pain medications like that can depress mood so I'm hoping my mood will improve and losing weight will be a little easier.  I want to thank my incredible mother for being patient and understanding when I had rough days.  I feel good that this great mountainous feat that has been looming before me for many years, knowing I would one day have to tackle it, has finally been tackled and I came out the other side triumphant.  I did it.    

Doctor Appointment 1/16/13

I had a doctor appointment yesterday with my burn doctor.  It was to check on my tissue expander and see how the home expansions were coming along.  Basically an assessment.  It went really well and it was good to see my doctor again.  Particularly since evidently he had a near death incident himself in December when he was operating on a patient and suddenly doubled over with severe abdominal pain.  He was rushed to the ER where they discovered his stomach had flipped and then rushed him into emergency surgery.  You can die from that shit.  He was incredibly lucky.  And so am I because I don't know what I would have done without him as my burn doctor.  He's done incredible things for me and he knows me, he knows my body and how it reacts.  We have a history.  We've been working together for four years now.  So I'm very thankful that he's still here.  So even though it was a serious thing, we had a few laughs about it with jabs like, "glad you didn't die," and "try not to do something like that while you're operating on me."

He seemed happy with how the expander looked and how much we had been filling every week.  Then he went ahead and did a fill himself while I was there.  He filled one syringe which holds 60cc's and injected it into my expander then went back to fill it again and I thought he was just going to fill it with 20cc's more as we had been doing at home for a total of 80 but I noticed he filled the syringe to it's max making that 120cc's and I'm thinking, oh my, he's gonna push it.  I thought he would be done with that but he went back to fill the syringe a third time!  My dad suddenly asked how much he was putting in today and with his killer smile he said, "I'm not telling till after I'm done."  I responded with, "smart man."  His back is to me while he fills the syringe from the saline bag and I'm situated in such a way that I can't really see how much was in the syringe when he was done filling it and came to me so I wasn't sure how much was in that third syringe.  But I was feeling it.  I was feeling pressure and stretch.  When he was done he had put in 150cc's.  Nearly twice the amount we were doing at home.  And I could feel it.

Then he got some supplies together for us before sitting down at the computer beside me and figuring out a tentative surgery date.  He wants about four more fills of at least 100cc's which puts us at a possible February 22nd date for my 38th surgery.  I'll only be in the hospital a few days since it's a flap procedure so there won't be a graft or donor site.  I hope there will be enough skin to stretch not only around the side of my neck but also around my neck under my chin to relieve some tightness there as well in the hopes that it will get me closer to my lip surgery.  So I'm really gonna push it with the expansions these next few weeks to really get that skin stretched and I probably won't be feeling the best these next four weeks.