A Very Special Package Delivered Today

I have not shared what I'm about to share with you with anyone except one very dear friend and then of course my mom and dad.  But here it is.  Me and my whole family are big fans of the mini series Band of Brothers but most in particular me and my mother.  But it's not just the mini series, there's more to it.  It's the true stories behind it, the brave men of Easy Company who fought in WWII and in most particular, Major Dick Winters.  After I watched that series I became obsessed with the men of Easy Company and Major Winters and read many books on them and watched the mini series over and over again.  Major Winters has become a hero to me.  He was an amazing leader, an amazing man and I completely admired him.  And unfortunately he died just last year.

But I wasn't the only one Major Winters was a hero to.  There was a little boy named Jordan who looked up to him as well.   So much so that the little boy took on a fundraising project to raise money to get a statue built of Winters.  He raised money by selling those rubber bracelets like you can get and wear for cancer and all kinds of illness.  But his said the words, "Hang Tough" on them.  Those are words that Major Winters would often say to his men and to people to get them through tough situations.  It was his mantra.  So Jordan got those words printed on these olive colored bracelets (Olive color for the OD's - olive drab color of the soldiers' uniforms) and sold them for whatever you wanted to donate to raise money for this statue.  And he did it.  The statue of Major Winters was just recently raised and dedicated in his honor in Normandy, where they dropped behind enemy lines on June 6th, 1944 - D-Day.

So I just recently caught wind of Jordan's efforts and these bracelets he was selling.  I knew Major Winters had passed but I wasn't aware that this boy was doing this.  So as soon as I found out, I immediately found his website to try and order a couple bracelets to not only support his efforts but also in honor of my hero, Major Winters.  I also thought the bracelets was perfect for my recovery - Hang Tough.  But when I found his website it said that they had raised enough money for the statue to be built and were all sold out of bracelets.  I was devastated!  There was an email address to write to if you had questions so I immediately wrote to the address asking if they were going to be getting any more bracelets.  It immediately kicked back an automated response that they were no longer selling the bracelets but they left another email address so I wrote again to this address, writing my story and how much Major Winters has meant to me and how much I really wanted to have one of those bracelets as it fit so well to my recovery.

Well, that night I got an email back from Jordan's mother herself saying how much she appreciated me sharing my story with her and how much she cared for what I was going through but unfortunately since they had raised enough money for the statue they had to draw the line somewhere and stop selling the bracelets.  My heart sank/  But, then she said that they had kept a few and set them aside and would love to send me two, one for me and one for my mother.  AAAAHHH!!  I was ecstatic when I read that!!  It brought tears to my eyes the wonderful things she wrote.  So I wrote her back thanking her to no end for being willing to send me and my mother those bracelets and how much it would mean in my recovery.  We emailed a couple times and then while I was in the hospital the bracelets came so I had my mother bring mind down so I could start wearing it right away.  And I wear it along with the one that my brother gave me.  I never take either off.

So to the last part of my story.  I must have made an impact on Yasmin (Jordan's mother) and her son Jordan who raised the money for Winters' statue because I received an unexpected package in the mail today.  I thought maybe it  might be something from my wishlist but my name and address were handwritten on the package so I checked the return address and it read, "Dick Winters Monument Fun."  I'm still at a loss.  The package was kinda thick so it was any kind of thank you note for taking interest or anything.  So I open it up and inside are four little round vials wrapped in bubble wrap with a sticky note stuck to the top that read:

Sarah - 

We couldn't help but think of you while in Normandy.

Enjoy the enclosed.

Yasmin and Jordan

I carefully unwrapped the bubble wrap and gasped and tears came to my eyes.  What they had given me were pieces of the places they visited while in Normandy for the raising and dedication of the statue, places that were significant to Major Winters' experiences over there fighting the way.  For example, there was a vial of dirt from Brecourt Manor where Major Winters led a team in to destroy the guns that were firing down on the US Soldiers on Utah Beach.  Major Winters earned a Distinguished Service Cross for his leadership and accomplishment in taking out those guns at Brecourt Manor.  Another vial held sand a small seashell from Utah Beach.  Another held sand from Omaha Beach and a fourth vial held dirt from Pointe du Hoc.  Of all the people they dealt with with this fundraiser, they thought of me and thought of me to bring back something that I would find precious because of our mutual hero, Major Winters and the fight that I am fighting.

 (Dirt from Brecourt Manor in Normandy)

 (Sand and a small seashell from Utah Beach)

 (Sand from Omaha Beach)

(Dirt from Pointe Du Hoc)

Helps put a warm feeling in my heart and soul that I touched their lives so that they thought of me while they were there in Normandy.  They thought of ME.  And wanted to send me something that they knew I would appreciate.  I can tell you that they have certainly touched my life and come into my life in a way I never expected.  Makes me wonder how many other people's lives I may have touched or inspired that I wouldn't expect.  It's an amazing feeling and I cherish it with my whole heart.  I hope I can continue touching people's lives and inspiring people.

"To do something, however small, to make others happier and better, is the highest ambition, the most elevating hope, which can inspire a human being."  ~John Lubbock

Amazon Wishlist

A little less than a year ago, I confided in a dear friend that me and my family were struggling with out of pocket medical supply costs for things the insurance wouldn't cover.  So she suggested to me to create an Amazon Wishlist.  This was something that I was unfamiliar with.  I didn't know you could do such a thing.  But I still didn't really want to do it because I didn't like advertising help and asking for help, especially when people were having a hard time with the economy with their own problems.  But my friend pushed and I conceded.  And it took off like a rocket.  I was so amazed at how people were willing and able to help out!  It was wonderful!  

Later, though, things cooled down and then as I was in a break between surgeries, things completely cooled off.  Which was fine.  Our wound care was not as extensive and I was doing OK in my recovery.  But we are getting back into the swing of things with wound care since I just had two surgeries and we're probably going to be back into the swing of surgeries again.  So I'm breaking out the Wishlist again and kindly asking people to help us out with medical supplies as well as things to help keep me busy with my recovery.  I don't have a lot of money being on disability so getting help with those non medical supply items really helps a lot too because otherwise I'm just laid up with nothing to do, nothing to keep me busy, and nothing to help pass the time.  I'm not just asking for movies and puzzles and whatnot to be greedy so I don't have to buy it myself.  I'm asking for them because I don't have the money to buy it myself and it really does make a difference in my recovery.  Otherwise I'm just sitting in a chair or in bed, with my leg up (cause that's usually where my donor site is), in pain, and watching TV mindlessly.  As for the medical supplies, well they speak for themselves as to why we need them.  

So if you can help, it is so greatly appreciated.  Every little bit counts.  And if you can't help, that's OK too.  I understand.  But I want people to be aware of it and keep it in mind so if you can help now, that's wonderful but if you can't help now, maybe you can later when you're in a better position to do so.  Thank you for listening and for any help you may be able to give.  Thank you from the bottom of my heart.  Click Here to go straight to my Amazon Wishlist or you may go to www.amazon.com, click on wishlist and enter my email address (jag1975@ymail.com) to get to my Wishlist.  Thank you again.

Eating Corn on the Cob!

I ATE CORN ON THE COB!!  I mean I ate it ON the cob!!  It's been four years since I've been able to do that.  FOUR YEARS!  My mouth was for one, too small and for two, my upper lip was too tight.  But not anymore, my friends.  I can curl that lip up and behind my top teeth, take it and twist it every which way with my fingers, and eat fucking corn on the cob!!

My mother made a comment to me this afternoon that got me thinking.  She told me, "You've been a real joy to watch since this surgery."  And I thought about it and it's because this surgery was such a success.  I mean, I've had other successful surgeries but there's something different about this one.  The success of this surgery has really shown me forward progress, mind you very small forward progress but forward progress nonetheless, that has given me hope for a normal life that I thought I had lost.  And it's been really small things.  A better smile that makes me feel more like the pre-burn me and this newest one, eating corn on the cob.  I still have a long ways to go but these two little things have given me new strength, new hope, new reason to fight everyday.  It's amazing how the little things in life can give you hope for something bigger for yourself. 

My New Smile

I hated my burned smile with my burned and fucked up lips.  My bottom lip is a big ol' mess, mostly due to the major contracture pull happening in my neck.  This surgery was going to work on that but because there is still some pull in my neck and some contractures to be cleaned up, my doctor didn't want to perform surgery on it just to have my neck pull it back down since it's all connected.  So he has stated that correcting my bottom lip will be one of the last things he does. But in the meantime there are other smaller things he can do on my mouth to help open it up and free it from the contractures that bind it.  This was one of those surgeries.

For those of you who have read my post before this already know what he ended up doing to my mouth and if you didn't read the post before this and therefore don't know, I highly suggest you stop reading this current post and go back and read the one prior to this before reading any further so you can truly understand what I'm going to explain in this post.  Then you can come back and continue reading this post.  Back to where I was...

There were two strategies my doctor had to releasing the contractures around the corners of my mouth that were also causing my mouth to be so small and taught, particularly my upper lip.  The first was to do some z-plasty's around the corners of my mouth in efforts to release the contractures around my mouth and upper lip.  The second was to do a procedure (the name of which I cannot recall) where he actually goes in and cuts open the corners of my mouth and does something with the tissue on the inside of my mouth.  The last time I talked to him at my pre-op appt, he was going for the z-plasty procedure and I was fine with that, even though a part of me was a little disappointed that he didn't decide to go with the procedure in which he cut open the corners of my mouth.  Even though I knew that would be the more painful between the two procedures, I worried that the z-plasty's just wouldn't be enough, wouldn't give enough release.

I don't know what changed my doctor's mind but something did after the anesthiologist put me under because when I woke up I knew something had changed in the plan for what I felt around my mouth without even touching my mouth, just the feeling of it, was not z-plasty's.  Something else had happened to my mouth and as soon as I was able, I requested a mirror to get to the bottom of what had happened.  But telling you again what happened is not what this blog post is about.  This blog post is about something else much simpler; SMILING.  MY smile.  So I told you I hated my smile because after my accident the contractures that had formed around my mouth had made my mouth so small and tight.  My upper lip was tight and pulled in while my bottom lip was contracted so that it was being pulled out and was thick with scar tissue.  I used to love my smile and I loved smiling.  I think smiling is a beautiful exchange between people.  And I was so horrified by my post-burn smile that I would either do a small, closed mouth smile or just not smile at all.  I wasn't able to tell much after this surgery how much release I got from the procedure because it was so, SO tender and hurt pretty good just to open my mouth to talk plus it was pretty damn swollen.  But during the course of the second day, the swelling began to go down and the tenderness got less.  I asked my mom for her mirror in her purse and I tried something out that to be honest, I was a little scared to try out for fear of being disappointed as I often have been in the past because of high expectations.  My mother handed me her mirror and I hesitantly gave her a go.  I parted my lips and slowly smiled at myself in the mirror.  I cannot describe to you the joy I felt at such a small thing.  A smile.  That's all it was but that's all it took to bring my heart incredible joy.  I no longer had a small, tight smile where you could barely see my teeth behind my lips.  This was a loose, big, teeth baring smile.  And what's even better is I know it's only going to get better as the swelling continues to go down and the stitches in the corners of my mouth are taken out.  It's also going to get better and better as more work is done on it.  My doctor said there is more work he can do on it to open it up plus the work he is going to do on my bottom lip.

It's amazing at how much such a simple and small thing can bring your heart so much joy.  I wasn't sure if there was going to be any hope for my mouth but after this surgery, I know there is.  I feel good and positive about the future of my mouth and my smile.  I know that sounds weird but you really have no idea how much a smile can mean to you until you've gone so long without one that you feel good about.

(My first new smile, post surgery 6.11.12.  More swelling to go down and stitches to be taken out yet)

Post 34th Surgery

"I'm a survivor - a living example of what people can go through and survive."  ~Elizabeth Taylor

Monday I had my 34th surgery and I woke up to some of the greatest pain I've ever woke up to in all my surgeries.  My mouth hurt like a son of a bitch and it was a different kind of pain.  I knew plans had changed in the OR with regards to my mouth cause this pain did not feel like z-plasty's.  This felt like something else.  Then there was the pain in the sides of my neck, or the top of my shoulders, however you decide to look at the placement of the releases and then the pain in my donor site below my right knee.  I could barely open my mouth to speak to the nurse who was taking care of me in the recovery room it was so swollen and hurt so bad.

Once they felt they had my pain fairly under control as much as they could there, they released me to be taken back to my room over at the OBC.  Of course as I come out of the recovery room, my mama's waiting for me in the surgical waiting room and comes out when they call her name.  She takes my hand to give it a squeeze that says "I love you, honey" and follows us as she has done time and time and time again.  As soon as I'm in my room and as soon as my nurse has asked what I need and leaves to go get it leaving me and my mom alone, I ask for a mirror.And I'm in horror when I see the reflection in the mirror because staring back at me is the Joker from Batman.  My doctor has cut open the sides of my mouth to open it up.  There were no z-plasty's in site as he said he was gonna do just before I went in for surgery.  Evidently he changed the plan after I was knocked out to a plan we had discussed a long time ago.  But I wasn't mad about that because I trust my doctor to do what is best and if he takes a look at my mouth after I'm under and decides that there needs to be a change in the plan, I trust he will make the right decision and go through with the right plan because we have been working together as doctor and patient for almost four years now and he knows me, he know my body and how it reacts.  But I do look terrible and am anxious to talk to him and discuss what he did exactly.

Trying to control my pain after surgery is a feat in itself.  Nurses are nervous to give me the amount of pain medicine as is prescribed for me.  Usually my doctor puts me on Dilaudid PO and a Dilaudid IV but I'm taken by surprise when the nurse breaks out the Fentanyl for my IV meds.  I'm even more surprised at how much my doctor has prescribed for me seeing as how he has a history of being nervous with pain meds as well.  Now, let me pain you a picture.  Fentanyl is about a 100 times more powerful than morphine.  And Fentanyl is often what they give you to keep you asleep in a medically induced coma.  To keep you asleep and out of pain in a medically induced coma, they usually put 100-150mcgs of Fentanyl in a person's IV.  Well, I've been prescribed up to 200mcgs of Fentanyl.  And I'm not being put into a medically induced coma where a breathing machine will monitor my breathing and keep me breathing if needed.  So all the nurses are incredibly nervous to give me the 200mcgs but on the night after my first surgery when I was in such excruciating pain from my foot, the nurse was giving me the 200mcgs of Fentanyl and I was having no problems.  I wasn't falling into deep sleep.  I wasn't slurring my speech.  My respiratory wasn't depressed.  I was doing fine.  So as you can see, my tolerance level for pain meds is so very high.  After my second surgery I was in excruciating pain again only this time it didn't have to do with my foot.  So my doctor orders a Fentanyl PCA for me that was close to the equivalent of getting 200mcgs of Fentanyl every hour as I was getting before plus 8mg of Dilaudid PO every 3 hours.  That should take care of me and so far it's done well.

 (My "Joker" mouth one day after surgery.  A lot of the swelling has gone down)

 (Left side release after second part of surgery and one day after)

(Right side release after second surgery and one day after)

(Wrapped up donor site on right leg)

Post 33rd Surgery Plus Mystery Foot Pain

Surgery #33 is checked off my to-do list, a to-do list that I unwillingly made for myself.  And it went really well.  The surgery itself was only about an hour - the shortest surgery I've ever put on my "surgery-do" list. Then another hour in the recovery room before heading over to the OBC, dad in tow.

When I got back to the OBC I was met with warm greetings of love and welcome back from everyone I passed, which brought little pieces of uplifting joy to my heart with each one.  And that's not feelings of joy to be back in the hospital exactly but rather more that I felt and could see on each person's face that I had made an impact on their lives in some way when I came in that dreadful night and everyday that I've come back.  We go all the way to the end of the hall to they very last room.  A room, oddly enough, that I have never been assigned to in all my four years of staying here after every surgery.

But something else has got my attention and is causing me pain.  It's not my surgical site like you'd think it would be moments after surgery.  No, it's my foot...the bottom of my foot, the bottom of the heel of my foot.  It's just my right foot and it's been plaguing me with terrible pain since early Monday morning when I woke up. Now this has happened to me before off and on for years but never like this, never this bad.  In the past I would wake up to pain in the bottom of my heel as well as up the underneath, right side of my foot but I would massage it and walk around on it and it would eventually go away within 30-60min.  Never did it last any longer.  Now THAT sounds like plantar fasciitis.  After waking up a little bit more after surgery, the pain really started in and only got worse as the day went on and night settled in.  Sleep?  yeah, right.  I was getting extremely heavy doses of pain medication in my IV and the first time I got it, oh boy howdy, RELIEF.  And the pain subsided for close to three hours after which I got more and I started to notice that with each new shot into my IV, the relief became shorter and shorter.  Great.  I broke down crying several times Monday after the pain got worse.  And I can take a lot of pain.  I've been through some of the worst pain but this was such pain that I compared it to pain I felt when I first woke up from my burn injury.  Yeah, THAT bad.

Finally a foot doctor from across the street came to see me on Tuesday morning and take a look at my foot. After taking a look and feeling around his assessment was as follows:  Could be one of two things: 1) plantar fasciitis BUT it's not behaving like typical plantar fasciitis because it is causing excruciating pain just laying in bed so there could be a nerve tangled up in there and 2) a bone fracture which is what it is behaving more like.  So he ordered an x-ray and I did that Tuesday evening.  Most of Tuesday and Tuesday evening I'm crying cause the pain is so intense and unrelenting.  But Wednesday morning rolls around and the foot doctor comes back in and announces that from the x-ray it looks like I have a bone fracture in my heel but he wants to do a CT scan to get a better look and confirm.  If it is confirmed to be a bone fracture I will be put in a splinted boot and ordered to stay off it for 6 weeks so it can heal.  It's around lunchtime that I get transported down to radiology to get the CT scan done.  After I get back, it's time for my dad to head back home to La Grande so I have to say goodbye and it's upsetting cause I hate being left alone at the hospital.

Later that afternoon, the nurse informs me that they got the results back from the CT scan and it showed no fracture.  So there was a sense of relief but at the same time a feeling of some kind of disappointment because we were back to square one with not really knowing what to diagnose it as.  Another break down sparked by killer pain and my nurse, God bless her, gets me a cold wash cloth and wipes away my tears, tells me to breathe, holds my hand and talks to me.  I finally settle down but I'm still in pain.  And I'm still in pain as I write this and it's Thursday morning.

My surgical sites on the sides of my neck look really good and actually feel pretty good aside from the tenderness and any pain.  I feel a lot looser and have more mobility.  When my doctor came in to check on my neck he asked how it was feeling and I told him what I just told you but I also told him there's a spot that still feels a little tight on the right side of my neck and he took a look and said he would release it some more in that area.  Also next Monday on my next surgery he is going to do some z-plasty's around the corners of my mouth in an attempt to loosen up the skin around my mouth cause it's so tight and contracted.  The contracture releases on the sides of my neck are pretty serious.  Pretty deep and wide.  But so far they feel so much better and don't pull on my face and head like they used to so I am happy for that.  I just can't believe I'm having to deal with this foot shit on top of my surgery.

 (Right side release)

(Left side release)

Getting Ready For Surgeries #33 and #34

On Monday June 4th I will go in to have my 33rd surgery and on June 11th my 34th surgery.  I have already started getting nervous and stressing over it.  No matter how many surgeries I've had, I always get like this.  It gets the worst the night before.  I just don't have the best track record with smooth and successful surgeries, and not because of my doctors.  I have incredible doctors that I just absolutely love.  It is because of the betrayal of my own body not doing what the surgeons want it to do and that's one part to my nervousness and stress.  The other is I do not like the feeling of losing control over my life by going under anesthesia.  And it's not like I'm a control freak.  It's just a complete feeling of helplessness over my body and my life once I feel the anesthesia hit my veins.  And I have about 4 seconds to say good luck to myself and hope that nothing will go wrong.  God, I hate it.

My surgeries this time around are to release contractures on the sides of my neck, the corners of my mouth and underneath my breasts.  It's a two part surgery where they clean up the scar tissue and contractures first and then lay down what's called Allograft on the first surgery.  The Allograft has to stay on for 5-7 days so that's why there's a week in between the surgeries.  The second surgery they go in and remove the Allograft and replace it with my own donor skin.  This has seemed to work rather well in the past with my body taking the grafts better since my body has a history of not wanting to take grafts easily so my doctor likes to stick to this routine in my surgeries.

My father is going to be coming with me to the first surgery and staying until about Wednesday and then going back home where my mom will come up on Sunday, June 10th and be there for the second surgery and stay with me until I come home.  The second surgery will be the hardest because of the added donor sites to cause me pain.  Donor sites are the worst because they are so painful.  I'm not sure where he'll be taking the donor sites from but I'm assuming probably my legs since that's where he usually takes from.

Today I have a lot to do to get ready for being in the hospital for 2-3 weeks.  I humbly ask for thoughts and prayers as I go into two more surgeries.  I will keep you posted during the next few weeks on how things are going.  Thank you all for your love and support through this arduous journey and recovery.