Hospital Days 3-6

Ok the Days on this one are a little sketchy since I wasnt 100% lucid 100% of the time.  I do remember getting to my room but what was funny was that I didnt see much but the tv and the bathroom door as my mobility of my neck was limited.  I have to say the view from my 2nd room was much better.  Well the few days I was there was filled with me a slightly imobile mute and nurses that spoke English but not as a first language.  So what all that means is that everything that I wrote on my pad was long form, so as you may imagine since I was in a general state of pain and discomfort writing everything longform was utter agony.  And hand gestures were a lost cause unless I was pointing at the bathroom or the random machine making noise.

Jenn went home for a night and came back, when she came back I wasnt doing so well.  I was having a hard time regulating my temperature first I was hot then cold, sweating through the night.  Jenn walked in and I cant remember if it was hot in the room or cold but I was the exact opposite.  I got up and sat in the chair for awhile and she said my heart rate was up and I said it was because she was there. (pause for the romantic AWWWWWW)   after some protest from Jenn to the nurse they called for some tests and next thing I know Im being wheeled off to get a CT scan.  Long story short I had developed a Pulmonary embolism and since thats a bad thing I was then wheeled off to ICU and at that point I was truly not happy.

ICU as most of you know stands for Intensive Care Unit, no mention of sleep whatsoever which was about as much as I got.  At first I was in a nice room off in the corner it was fairly quiet I had a cool nurse, she ordered me an air mattress for the bed which was awesome, saved my very sore ass from being much worse.  Well the first night went ok I got some sleep but the next day I got moved to another room so that my nurse could have both her patients next to each other; this put me right across from the nurses station which by the way had 2 speakers that blasted out a tone everytime anybody hit their call button.  Blasted right into my room (fun stuff).  I spent the next couple of days not getting any sleep and being poked and prodded and not sleeping.  My birthday came and I was greeted by Jenn and her sister, she decorated my room and cards it was so nice a big bright spot on my day.  Well the only other bright side to this was that I was told that I was gonna get moved, I didnt get moved till the next day but by that time I was at my wits end.  Dealing with a myriad of nurses with different ways of doing things and different levels of care.  Ill continue with my new room on the next post.

Hospital Days 1-2

Well as promised here is my recollection  (with much help from Jenn) of my stay in the hospital.

Day 1:  Well we drove from Las Vegas to Jenn’s sisters house in HB got a few hours sleep and then off to the hospital.  I got checked in, got to my very uncomfortable bed, more on that later.  A myriad of Doctors came in marking me, I signed papers blah blah blah.  I then got my IV put in, the Dr put the line in, as you know if you know much about me that I hate needles shots and the like.  This was painless he gave me some lido-cane and that was the worst of it.  The rest was painless.  He then gave me some drugs to calm me down and I needed it most definitely.  Jenn was there with me the whole time she talked me down when I needed it and I needed it quite often.   After that I dont remember much of anything, well anything at all.  I woke up probably 13-14 hours later and the first face I remember seeing was Jenn’s, she came in the room and she said I smiled at her.  I dont remember much after that, Jenn says that I was complaining about being hot.  She fanned me the nurses wouldn’t bring a fan in cause it would blow germs around.  Keeping in mind at this point I cant talk.  I have a trach tube in so Im restricted to hand gestures, writing words on Jenns palm and then later I got a clipboard and a pen.  The clipboard and pen helped sooo much.  Now back to the bed, as most of you know the tumor was on my left jawline, they were supposed to take the grafts from my left leg which would have made sleeping easier, not so much for Mike.  My right leg had better blood vessels so they took the grafts from my right leg.  Well this makes sleeping very difficult since Im a side sleeper.  Im stuck on my back cant lay on my right cant turn on my left.  Well to compound matters Im too tall for the bed (that got remedied soon enough).  But the mattress was awful my backside is still recovering…still.

Behind the scenes while I was being worked on, the waiting area was well organized.  Jenn told me she would check in they would mark on a whiteboard where they were sitting, much like a restaurant.  If she left the area to eat or take a walk theyd give her a beeper.  From time to time the surgical nurse would call down to give updates.  When Dr Sercarz came down at about the 8 hour mark he met with Jenn gave her an update.  Then later that evening Dr Blackwell came out after about 12hours of working on me he gave Jenn an update on me, he was working on the graft while Dr Sercarz was working on my neck.  He was in the O.R. about 12 hours.  He does this all the time a true marathon man.

Thats all for now.

LA Follow up

Well yesterday mom and I went to LA, we flew out early and my sister flew home after a 10 day visit.  Thanks sis.  Both Doctors are very pleased with my progress, they answered all my questions.

Shoulder and neck range of motion will return I have to exercise it and stretch everyday.  The nerve to my shoulder is there just the muscles are weak.

Leg looks good, the lower part is coming along nicely Ill have to keep it wrapped until it stops weeping, it oozes stuff, its part of the healing process.  So as soon as I have 2  or 3 days of clean bandages I can stop it will take 3-4 months depending on how fast I heal.

Mouth and neck are healing nicely, the swelling will go down in time my mom says the swelling is going down daily.  I can see the change from day 1 but not day to day.  It will come but not fast enough for me.

As for the future I asked about milestones I asked about a year Dr said that these types of cancers will come back within the first 2 years so Im gonna take this a year at a time.  If I get a year Jan 19th 2012 that will be a celebration for sure because since this started I havnt made it a year without it coming back.  A year will be a blessing 2 will be HUGE and in 5 years Im considered cured.

As for the immediate future Im going for radiation and chemo again.  Ill only be getting radiation to the new tissue and chemo along with.  Ill only be getting about 80% of the amount of treatments from last time (35).  Drs believe that if we hit it hard now that we can get it all.

My Dr is  “Cautiously optimistic”

Im very optimistic

Waiting

So we all get up everyday, usually go to the bathroom swinging by  a mirror or two and when we look in that mirror we are usually faced with the same picture we were greeted with the last time; there are no surprises, well except for the occasional zit but usually no surprises.  I remember lying in bed the day of surgery Jennifer had told me I looked good, that the skin match was great and many other positive things that I cant remember but knowing her Im sure she wasnt at a loss for loving words.  She took a picture and showed it to me I fought wanting to see it at first, having no desire to see for what has plagued me from the start was the not knowing of what I would be after.  I eventually looked but not liking what I saw I pushed it from my memory, I think the drugs from surgery helped a little.

A day or so has passed and Im lying in bed and my very Russian nurse Tanya was trying to teach me how to care for my trach tube and suction out my lungs to keep fluid build up, both an all together unpleasant experience made worse by the nurses expecting you to do it to yourself.  I was still unable to talk so I scribbled on my pad, cant see what you want me to do so she swings that hospital table around, flips up the mirror and BAM there I am.  Im sure I was looking better that the day right after surgery  but it was still a shock.  Everyone thats seen me says I look great that the Dr’s did a great job.  Im only out of surgery 2 weeks tomorrow.  Im still not fond of seeing my self in the mirror, Im waiting to see what everyone else sees.

Waiting…

Home day 3

Well I’m gonna do 2 timelines so I’ll keep the titles separate so as to avoid confusion.  The others will be titled Hospital day 1,2, etc.

Well after a very long stay in the hospital stay we got checked out around 12 and started our long trip home from UCLA.  It was an uneventful trip but still sitting in the car for 4.5 hours really didn’t do my already sore butt any good, but at this point I truly think I have a callous now.  My mom greeted us and my sister and daughter came later they were out getting groceries.  It was nice to get home take a shower and get relaxed in a comfortable bed and especially not being poked and probed at all hours of the night.  Hospitals are great for healing not so much for rest.

As for my rehab Im walking 20 minutes 3 times a day, mostly learning how to walk again without club footing it and using a natural stride.  Amazing how tight stuff gets, but I feel progress everyday my foot loosens up quicker every time Im on it.  I wont be running any marathons soon but Ill be able to get up and down stairs and walk around like normal.

Since I had the pulmonary infarction I cant do to much, I have to do these injections to thin my blood and allow my body do dissolve the clot this is a non permanent condition that will take time to eliminate.  My days are pretty boring, trying to make them stretch out and taking time to do things and mix it up so I don’t get burned out on things.   The highlight of my day is seeing Jenn when she stops by after work.

Not much else to say, but Ill keep you all posted.

Mike

Going Home

Never has that phrase had more meaning. I don’t have much to say other than unless youve been in a hospital for more than a day or two you know that they make very expensive crappy hotels. My butt can’t take the beds or the chairs anymore, and no amount of pillows will relieve that “pain”. Once home and settled I’ll begin the recount of my experience, as best as memory allows. There won’t be any pics as of yet as it is difficult for me to see myself in the mirror.

But I know time heals all and that perhaps is the hardest part.

I’ll finish this by thanking everyone that has supported me my kids my family, especially the love of my life Jennifer.

D-day

Well were in LA headin out soon it’s all over but the cuttin.

See y’all later.

Mike

Friday

So I hoped all enjoyed “Go South” it was the funniest/slightly frustrating start of the day once I got to LA.  I had to get up Friday morning at 330 leave at 430 to get to UCLA in time to get my last 2 preoperative tests done.  The one was an oral splint which is basically a mold of my teeth and mouth so that after they cut my jaw away and remove the bad tissue they have a guide to size it correctly.  Well to do this means they put these trays in your mouth filled with this fast drying mold stuff then they cast it in reverse to make a model of my mouth.  It took the dentist about 30 minutes to get the trays wide enough to do the job properly, which just confirms what we’ve all known I have a big mouth.  So he gets them all made and pours the goo in there and sticks this thing in my mouth.   Now my range of motion of my jaw is severly reduced to give you example I have to squish a peanut butter and jelly sandwich to fit it in my mouth.  Anyway he sticks this thing in my mouth on my bottom teeth and has to push down in order to get a good impression PAIN PAIN PAIN.  So wisely enough we did the bottom impression 2 top impressions and then another bottom  bottom impression.

The second test I had to get done was a fancy MRI of my legs to make sure I have good circulation in my legs so they take the best stuff  graft in.  Other than that it was a long drive back filled with shitty LA traffic.  I got home around 9ish all safe n sound.

Im ready now, all the paperwork is done all is left now is the cuttin and a pasting.

I got back to work and had great dinner a little send off toasts to my speedy recovery and return.

I was nice……..

Tomorrow my mom and her cousin are getting here, headin to LA round 7ish…  then the fun begins.

Talk to you soon hope the 5 of you that read this are enjoying it so far, tell a freind

Go South

Me: “Hi I have an appointment for 9:30 and Im on campus but Im lost, Im standing on the corner of Tiverton and James Charles way how do I get to you”

Girl 1: “Hold on Ill get someone to help you”

Me: “Ok”

Girl 2: “Hello Oral blah blah clinic”

Me: “Hi I have an appointment for 9:30 and Im on campus but Im lost, Im standing on the corner of Tiverton and James Charles way how do I get to you”

Girl 2: “Go South”

At this point I have a look of confusion on my face, I look up I see trees and tall buildings Im emcompased completely in shadow.

Me: “I dont know where south is Im surrounded by tall buidings and trees and I dont have a compass, but Im near the building called the school of Dentistry clinics”

Let me digress for a minute, I have a map of campus ( a shitty map but a map), I have a great sense of direction and having been the victim of bad naming conventions before.  e.g. San Pedro Way   San Pedro Court  San Pedro Ave.  All located in the same neighborhood UGH.  The map said School of Dentistry, the sign on the building said School of Dentistry Clinics so Im thinking maybe this is the buiding maybe not depending on if the same stooge did this campus and the aformentioned San Pedro debacle.

Girl 2: “Sir Im trying to help just go South”

Me: “If I dont know where South is that doesnt help, Im standing in front of the school of dentistry clinics buidling If I were to walk out these doors where do I go” 

Girl2: “Oh ok well theres some construction stuff out there you need to go towards that and then over to…..”

So at this point Im following her directions which is taking me back to where I just parked my car I interupt her

“Im on foot I told you I was standing in front of the School of Dentistry Clinics building is this where I need to go?  I wasnt sure cause the map and the sign on the buiding wasnt the same.”

Girl2: ” Oh yeah thats it just go inside elevators in the back……”

Me: “Thank you”

Lesson learned           just go South

Less than a week to go.

So if all continues as planned this time next week Ill be in bed with tubes and hoses in me, recovering from surgery.  If its the normal 10 hours I should have been out about an hour or 2.  At this point Im likening this whole experience to getting in a freezing pool one small bit at a time and just about the time I get to my waste Ill be at the hospital waiting to get poked with a needle.  I said before Im not scared but now I am a little but  it comes and goes.  Just not sure what of…..like I said its that inching into the cold water not knowing what the next bit of cold is gonna bring.

I guess Ill know in a week.