4 weeks out

We are rapidly approaching 4 weeks since I had the latest surgery.  Everything continues to progress nicely, I suppose.  I had a days worth of appointments last Monday, the 22nd of December in Houston at MD Anderson.  There were three appointments on the schedule, first was speech pathology, followed by the plastic surgeon and finished with my ENT surgeon.  The speech pathologist set me up with a new type of HME filter holders, this kind was adhesive backed and doesn't require a neck strap.  For those unfamiliar, I no longer breathe through my nose/mouth combo, instead I draw my breaths through a hole in my neck that leads directly to my lungs (the opening is called a stoma).  I am what is know as a neck breather now.  The nose has a couple of important functions that I no longer get the benefit of.  It filters the air that is headed towards the lungs and provides moisture for that air as it travels into the body.  I no longer have any natural means of filtration or humidification, therefore, I must replace that with an artificial means to accomplish these functions.  Until last Monday, I used a larytube, held in place with a cloth strap that wrapped around my neck.  The opening of the larytube holds a small, round filter/humidification insert that I change every day.  The adhesive pad simply sticks to my neck around the stoma and a filter cartridge is inserted and I can go about my day.  I like it much better than the tube/necklace combination as I barely notice that it is there during my daily activities.  The tube annoys my airway and makes me feel like there is always something in my trachea about two inches in and I feel like I need to cough much more often.  I still have to use the larytube when I sleep, but at least I have some options as I get used to daily life as a dumb neck breather.

My boys on their new trampoline

We went to one of the restaurants in the complex so that Jessica could have breakfast and got a call soon that my swallow study was scheduled shortly and we needed to head back over to one of the imaging areas in the main campus.  The swallow study was pretty cool and I was able to see a lot of the action in real time.  It involves sitting in an x-ray booth and swallowing a barium solution while the technician records video of my upper body as I chew and swallow.  There were two concentrations of barium solutions, one very liquid and the other the consistency of pudding.  Neither tasted good at all, but the pudding was revolting enough to cause some gagging, but I did swallow it.  Swallowing was deemed good enough to let me start eating food, but I was advised that I should take it easy and start slow.  Soft foods and liquids.  No cheeseburgers.  One step closer, but not quite there yet!
The visit with the plastic surgeon went well and they were able to remove the stitches.  They really did a number on my neck this time and I don't think having the stitches in for three weeks did me any favors.  The stitches came out easy enough and other than it taking an hour longer than it should have, the visit was uneventful.
From the medical center, we raced out to the Memorial City office to meet with my ENT surgeon.  This was our first visit to this office and it took some time to find it, but we made it and the entire visit didn't take too long.  Overall, the visit was good.  I got to talk with the surgeon and her PA, both of which I have known for too long now.  My surgeon reiterated how good she feels about the outcome of the surgery and the results of the pathology that we got back recently.  She always likes to give me warnings that I usually just shrug off but this time she actually chuckled a little and said "you aren't going to listen to me at all, are you?" as she gave me some of her guidelines on what I should and should not eat.  She talked a little about me being near water and I held my hand to my upper chest and said I would only get in the water that deep, to which she held her hand at her knee and recommended that I not get in deeper than that.  Somewhere in between is probably where I will end up, although I don't have to worry about that for a while.  I found out also that the voice prosthesis is not a done deal yet.  They need to see in the next CT scan results what the inside of my neck actually looks like and where everything is in order to know if they can punch the hole or not.  The problem is my pectoral flap that they moved and stretched in this procedure and it's location relative to the spot where they will have to punch the hole between my trachea and esophagus.  If it is in the way, I might not be able to have the prosthesis, but we will have to wait and see.  My official followup plan is to have a CT scan roughly 8 weeks out from surgery.  That will be the new baseline and will tell them more about the TEP procedure that I can hopefully have.  After the baseline CT, I will have a CT every 3 months to look for new tumor growth or trouble spots.  Other than that, it is just rest and recover.  
Still trying to get used to my inability to speak.  I get frustrated very easily.  Very, very easily.  I hate the electrolarynx, but I guess I need to get some practice with it.  I am reading a lot about esophageal speech, but it appears to be tough to master and take a long time to get good at.  There are options, but nothing will happen overnight.  I need to start doing some physical therapy and learn to massage out the fluid that builds up on the right side of my neck, but I am still just focusing on resting and getting used to my new life.  That seems to be enough right now.

Dumb guy problems.

This is just a quick entry to complain about my two main problems, me being dumb is number one and my inability to eat is the second.  I am currently living in this world as the definition of the word dumb.  One of them, at least.  It continues to be very interesting going about daily activities with a complete inability to speak.  My current solution is to use an app on my phone and type anything I need to say and then either use the phone speaker or any one of the 12 bluetooth speakers that I have.  My favorite has to be using BROCK.  To those unfamiliar, BROCK is the 5th member or our tiny family.  He came into our lives almost one year ago and has brought immeasurable joy to not just the four of us, but to countless others that happen to cross paths with him.  You have probably guessed by now that BROCK is actually my suitcase-sized rolling bluetooth speaker officially named The Block Rocker.  Paired with my phone, I can be in my room and I can yell at the boys on the other side of the house.  When I was in the hospital, the default voice that my phone spoke in was an unbelievably dissatisfying voice that Jessica called Linda.  Very female and very much not what I wanted to sound like when I was trying to argue with the nurse.  And when things got really heated, I don't think my anger came through on the white board that I was trying to communicate with.  On the drive back to Lago Vista, as Jessica expertly chauffeured me towards home, I downloaded my new voice.  Officially it is called The Dark Lord, but it is now the voice that embodies all that is Bryce.  The downside to all of this technological communication is that it happens at the speed of texting.  By the time I have something typed out in a normal conversation, things have progressed four or five thoughts past where we were when I started typing.  Unless those involved patiently wait for the dumb guy to finish typing before continuing the conversation.  It is incredibly frustrating.  Frustration is my new go to emotion.  In the long run, I feel like this will help me as a person, especially with my patience...which was severely lacking to begin with.  SOME patience is way better than absolutely none at all.  Currently, I am learning to be an observer, interjecting myself when I need to and the situation demands it.
The second problem is one I struggle with every day.  I have been hungry since I woke up immediately after surgery.  These tube feeding just don't cut it and it still feels like I am constantly messing with these "feedings".  I started juicing this week again and putting the vegetable juice through my tube and that has led to some interesting sensations.  It is very interesting how much I can actually taste when I put liquid directly into my stomach.  I suppose it has something to do with gas released during digestion travelling up my esophagus and then being expelled as a burp.  It is almost immediate, however, and I didn't notice it until I started pouring in kale-spinach-carrot-beet juice.  I was looking forward to NOT having to taste it, but as is so often the case in my life, it didn't work out the way that I was hoping.  At least I am getting something in my belly other than baby formula, a little diversity is good for my tummy.  Still looking forward to that glorious first cheeseburger, although I am a bit concerned with my chewing ability now that I have had so much time without really working out my jaw.  The left side of my jaw is still mobility impaired and painful from the second surgery and first round of radiation that focused treatment in that area.  The muscles are always tight over there and they get stiff and crampy when I haven't used them in awhile.  Any pain will be well worth it to once again get the pleasure of eating normally again.  I will likely make myself sick the first day back on the eating wagon, but I have already prepared myself for that and will gladly accept my punishment.  I can't be around people who are eating anymore, so I spend family dinner time laying in bed listening to the frivolity happening at the dinner table.  That is much better for everyone.  Who needs the dumb guy sitting at the table drooling over the meal of the day and getting increasingly annoyed by the sounds of people eating? Nobody living on Rockefeller Cove, of that I am sure.

I was discharged from the home health service yesterday, so that is a step in the right direction, I suppose.  I report next Monday to have the stitches removed and visit the surgeon for the first time since surgery.  Should be fairly routine and I am not expecting much to come of it at all.  That is the day, however, that I have my best chance of eating normally for the first time.  They will do a barium swallow study to see how my swallow function is post surgery.  I really hope that I ace that test.  I don't know how much more of this I can take.  Monday shall either be a very good day or a very bad day.  Again, time will tell.

A full week at home!

It is now Monday, December 15th, 2014 and I have been recovering at my house on the 17th hole of the Highland Lakes Golf Course for exactly one week.  The time has flown by and I continue to improve every day.  I probably mentioned this before, but this time feels totally different for whatever reason.  Physically I am able to do much, much more than I have in the past and mentally I am filled with much needed hope and feelings of finally being able to put all of this behind me and a vision for the future.  It has now officially been almost 3 years since I first was diagnosed with squamous cell carcinoma and SO much has happened in that time.  It feels like I have been fighting this my whole life, or at least a good portion of it...but it has only been 3 years.  That seems like such a short amount of time when I think about the rest of my life, but it also feels like an eternity to me.  It is crazy how the mind works (my mind, at least).  I don't have the greatest memory in the world (just ask Jessica about that), but I usually remember the big things.  My mind has erased a good portion of the events leading up to the surgery on December 2nd.  Just the normal everyday stuff.  We had a great Thanksgiving day with my entire family.  My mom and dad were at their house up here, along with my sister and her family and then my brother and his brood arrived on Thanksgiving day.  I don't really remember any of it.  We had family pictures made that Saturday along with a birthday party celebrating AJ's 8th and my brothers youngest daughters 1st.  I couldn't tell you what happened that day if I had to.  Nothing.  Erased completely.  Pretty sure I went to work during that week, but I don't know when or what I did.  The one thing that sticks out in my mind is immediately prior to surgery, after I made my way on to the surgical table in the operating room, surrounded by a team of medical professionals and hooked up to the gas they always give me to relax me and begin the knock-out process.  I reached out for my ENT surgeon, Dr. Pytynia, and told her that my name was Bryce and to stop calling me Mr. Stobb.  That's it.  Apparently that is the one important thing that I needed to remember about this whole ordeal.
Liquid feedings suck.  They say that it is a great way to recover.  No need to worry about eating, just hook your tube up to a bag filled with formula, let it drain into your stomach and get on with your day.  On one hand, yes, it is a very simple process.  I understand exactly what they mean, as eating has been very difficult after most of the surgeries I have had.  What they don't tell you (and maybe it is just me) is how incredibly unsatisfying it is to be fed in this manner.  Sure, I get my calories in and the nutrition I am getting fills me up.  It fills me up, but it is, in NO way satisfying.  I want a freaking cheeseburger.  I want to smell it (which, interestingly enough, I probably won't be able to do as I don't really smell anything anymore), I want to bite into it and taste it, i want to chew it up.  All those sensations are lost when you pour liquid directly into your stomach, bypassing the best part, the sensory delights that accompany the act of eating.  It is absolutely maddening having to watch everyone around me eat while I sit there hooked up to a bag on an IV pole and fluid slowly drips directly into my stomach.  I have one more week until my stitches come out and I have my swallow study to make sure I am capable of eating.  I can assure you right now that I am capable.  I drank some water yesterday to test out the function of my throat and esophagus.  Although very strange feeling, I can definitely ingest a mouth full of water.  The strangeness has to do with a lack of feeling in my throat and upper esophagus, I think.  I feel the liquid in my mouth and then I swallow and it is gone.  I don't feel it go anywhere, but it is undoubtedly not in my mouth anymore.  I guess I don't have feeling back there where they stitched me up anymore, which could pose a threat to someone who breathes normally.  That could be a choking hazard, but when you breathe through a hole in your neck, I doubt that it is really a big deal.  Speaking of eating, I think it is now time for my breakfast.  Two cans of formula, some water and a bunch of medicine.  Try not to be jealous.

Recovery continues to go very well.  I received great news on Friday in the form of a pathology report from surgery that is very promising.  For once, the surgery yielded no surprises and the results lined up with expectations going in.  Basically, they got all the cancer out that they knew about, and the suspicious spots they took out were not cancerous.  While this does not mean I am completely out of the woods yet, it is a big step in the right direction.  Time will tell what the final outcome is, but for now it feels so good feeling good again.

Back to it.

Greetings, everybody!  It is I, Bryce, back from the brink of insanity and here to regale you with stories from the edge.  OK, so that is probably a bit much...but I am here to update everyone in my own words the major events of the last week or so.  Jessica did a fantastic job updating in my absence, in addition to doing an amazing job taking care of me and watching over me during my hospital stay.

Speaking of the hospital, let's talk a bit about that.  I really like my surgeon and the team of people that perform my surgeries there at MD Anderson.  I like them a lot and I think they do an incredible job doing what they do and feel like they have done amazing work on me, especially this time around.  This surgery could have been so much worse, but they did everything they could to take it easy on my and make the impact to my body (and consequently, my life) much less severe, I think.  The big changes to my body are that my trachea now exits  my chest at the base of my neck, so I have a large hole there now and I have no ability to talk whatsoever.  Time will tell if they got everything and my body is now rid of the cancer, but if it is, I will gladly take that trade off.  They were able to fill the newly created voids in my neck with the existing flap that I got in the last surgery (my former right pectoral muscle) and did not have to re-purpose my left pectoral and for that, I am very glad.  I still have a lot of swelling in my right neck, so that looks kind of funky, but I can honestly tell you that I am extremely happy to be alive right now and considering the scenarios that I had running through my mind in the weeks before surgery, I am amazed at the outcome of this surgery and how well I have recovered to this point.  So that is the good, let's talk a bit about the bad.  The hospital stay there was, again, a complete nightmare.  The nice thing about living in my body for the last 37 years is that I kind of know it.  Even through all the changes, I know what it feels like when I have a full bladder and need to pee.  I have always had issues using the bathroom after these surgeries, especially after they remove the Foley catheter...but I can do it when my body has enough fluid in it to need to do so.  The motto of the MD Anderson nursing manual must be: "Force a catheter up their pee-hole, ask questions later".  They again evacuated my bladder by using a straight catheter because they felt I was not outputting enough, ignoring the fact, in my opinion, that I was not getting very much in the way of fluids at that point.  The straight catheter, in addition to relieving me of piss, also greatly pisses me off.  I argued with them relentlessly, which is EXTREMELY hard to do when you do not have the ability to talk.  I was mad.  Even after the first straight catheter, they were about to try it a second time and this time I was not going to let them do it.  I gave them mathematical representations of my input versus output, I pleaded with them.  I know my body, I know what it feels like when there is fluid in my bladder, I know how to use the bathroom in a way that I can comfortably do it even after these surgeries.  They did not listen to me at all.  They never do.  They brought in the first (of 2) ultrasound machines to see how much fluid was in me.  None.  Couldn't find any.  At that point, they could have believed me when I said I didn't have anything in there, but they didn't.  They went and got ANOTHER ultrasound machine.  The results from the second machine?  Nothing.  There was absolutely nothing in my bladder.  SHOCKING.  They left dejected, and I was the happiest I had been in a long while.  It was such a satisfying feeling when they came back in to let me know they consulted with my surgeon's fellow and he said I might be dehydrated and to give me a liter of fluids.  The happiness was short lived, however, as their insatiable desire to put things in the many output only orifices of the body once again reared its ugly head and they turned their attention to the movement of my bowels.  I won't go in to detail on that one, but lets just say they won that battle.  After just a short 6 night stay in the hospital, I was discharged on Sunday and we made the 3 hour drive back to Lago Vista and settled back in to the comforts of home and things got much, much better.

Now that the surgery is behind me, I can definitely say that the build up to it was far worse than the actual event itself.  Prior to surgery, one of my biggest fears was feeling trapped inside my body with no way to communicate my thoughts since I didn't have a voice.  Some of that was realized and I still struggle with communication now, but those first few days it was maddening.  It is an incredibly frustrating experience to suddenly not have the ability to talk, and I will have to work on my patience in the coming months.  Overall, however, I am feeling better than I have in months.  There is no longer the stress of the unknown from a radical surgery, I now know what I am faced with and can adjust accordingly.  For now, I am at home resting and recovering.  I am recovering remarkably well for what I have been through, I think.  This surgery was one of the more invasive and yet I am recovering better from this one than I have from any of the previous.  Blind optimism says that I am recovering so well because they got everything out and my body is now free to heal itself minus any cancerous cell growth, so let's go with that.  I have more to say, but Jessica really wants me to post something, so this is it for now.  I have until the 22nd before my next appointment, so I have some time to rest.

The First 48

Waking up from surgery and feeling so optimistic and happy was a WONDERFUL thing.  But there were still some battles ahead.  Yesterday was exactly as we both expected it would be.  No sleep after surgery, because everything beeps all of the time.  His pain has been managed VERY well this round.  But that comes with a set of alarms and tests too.  He wants to bend his left arm, but the IV is in there.... alarm.  He has a pain pump that can slow your heart rate down a little.  Therefore, an oxygen monitor is required.  When it goes too low..... alarm.  And just when you think you've got it all figured out and rest can happen, it's time to check the vitals again.

Rinse and repeat.

This is surgery #4 in under 3 years for him.  We are starting to figure a few things out.  Doctors make rounds early.  Like, 6:00 am early.  Then it's changing of the guards for nurses on the floor.  Inevitably, it will be time to check vitals too.  From 6-7:30 in the morning, there's a flurry of activity when you really think you can't be awake 1 more minute.  Then.... nothing.  For almost 2 hours!!!!

If you are calling or texting us before 9 or 10, I can guarantee we're still asleep.  And it feels SOOOOO good!!!!!

Now, down to the nitty gritty.  Bryce was, of course, very tired yesterday.  They did take out his foley (sp?)/catheter.  Then the battle began.  He says he needs more fluids.  They say he's fine on fluids.  Bryce says he doesn't need to go to the restroom because there's nothing in there.  They say this is BAD!  This morning for the changing of the guards, he was PISSED!  It all snowballed to a very angry man by mid-morning.  When you and I are upset with something, we say what's upsetting us and it's over with.  He's tired.  He can't pee.  He's frustrated with the amount of things he's connected to.  NOW.... do all of that to a Bryce that can't talk.  Folks, I'm here to report.  It wasn't pretty.

They have this thing that can scan the bladder to measure how much fluid is in there.  Sort of like a pregnant woman looking at her baby via ultrasound, but a smaller scale.  This is no joke......  They brought in another machine because the first machine said he was empty.  They couldn't believe he had an empty bladder.  I can't tell you the satisfaction my husband gets from being right.  But he was!  He knows his body & he knew he wasn't getting enough.  They finally dumped a bag of fluids in his quickly and BOOM!  Guess what's happening normally??

He rested for a little bit after being so upset with everyone.  Once he got the fluids in him, his demeanor and mood were MUCH better.  His mom and brother came in and we all went for a walk to the Observation Deck.  It's lovely up there.  Then the trek back down.  Just when he was starting to drift off, more people started coming in to see him.  I'm pretty sure we've been contacted by every department in the building in the last 48 hours.  One lady we saw today said that she came by yesterday, but she was 4th in line.  She gave that a hard pass and saw him today.

Anyhow, it's 6:00 now and he's fast asleep for a little while.  And to leave this post with a pretty picture of some sort, I took one of the flowers his employer sent.  Thanks Fallbrook!!!!  They're beautiful!!!!

DONE!!!!!!!!!!

So.... I typed all of this stuff below, then plastic surgeon came out and said that he's done too!!!!  So here's the 1st part:

Well I couldn't be happier right now.  They called for Stobb just after 1:00 so the surgeon could talk to us.  I sort of wanted to throw up and do a cart wheel.

Why is she done early?
What's wrong?
Maybe this is really fantastic news?

It's the latter of the 3.  Everything went really well on her end of things.  She removed the larynx and a few lymph nodes that were in the area too.  The plastic surgeon has stepped in to assess the damage and try to repair it.  She did remove some of the skin, so he'll have to do something about that.  When we spoke to him yesterday, he said that he was going to TRY to use the pectoral muscle that was used last time.  If it doesn't work, then they will have to do the same thing with his other pec muscle.

For now, this is good news.  I'm very happy with everything she has told us thus far.  I could do a happy dance!!!!!!!!




Annnnd..... HERE'S the new news!!!!
The plastic surgeon was able to use the same right pec muscle in a new location in his neck.  He feels good about this too.  They injected something called exparel to help him manage pain when he wakes up.  They are moving him back to recovery to start waking him up.

Specific prayer request:  HELP HIM STAY CALM, LORD!!!!!!!!

His biggest fear is his state of mind as he wakes up on pain meds & freaks out when he can't talk.  I'm going to sign off.  I am hoping they will call me again really soon so that I can go see him.  I will update again very soon!!!!!!!!!

PRAY! FIGHT! WIN!

It's happening

Good Morning to everyone out there!!!  This is the wife blogging for Bryce.  He asked that I get on & update everyone.  He was wheeled to the operating room at 7:00 for the 7:05 start time.  We've been here since 5:30.  Bryce's brother, David, woke up early to drive us up here.  I think that he also just told me that Bryce's name has now shown up on the status TV that they have in the waiting room.  He's in OR 10, while we are in the Elderberry waiting area on the 5th floor.  He will be back there for quite some time.  If the updates this time are as vague as they were last time, I might just tweet them from his phone.

Did he ever tell you the story of the updates last time?  Kind of a joke really.  They'll start at 10 & happen every 2 hours.  The 1st one will go something like this:
Good Morning.  Are you Mrs. Stobb?  Great.  His surgery started at 8:blah, blah.  He is stable.

The End.

Seriously...... they don't tell you much. Therefore, tweets seem to be the best way to handle the lack of info that I actually get.  I also might be posting on my blog with some of the emotional aspects of the last couple of weeks & days.  So, that's going to take away from his.  Sorry.....  it's just a good way for me to vent.  Now I know why he started doing this.

So that's it for now.  And if there's no news, that's good news.

I'll try to post some pictures and such soon

Run away!!!!

I think I still have time to run away, right?  Haha!  Just kidding.  I can't wait for tomorrow morning!!  5:15 am I am supposed to report for my date with destiny.  My guess is that I have moved well beyond the freak out phase and am in some sort of delirium where everything is sunshine and rainbows.  I guess I don't have much of a choice...drive myself crazy worrying about it, or just walk in tomorrow and face what I must.  So that is what I shall do.  Walk in tomorrow morning and once again hope that this, my fourth surgery, will be the one that actually works.  In a way, I have the easy part in all of this.  I just have to show up, fall asleep and let them hack away.  I just have to wake up and skip gleefully away!
Anyway, I don't have much to say...just waiting around at my mom and dads house until I have to head in to the hospital.  5th floor is where it will happen, near elevator E.  I am as ready as I can be and now just want it to be over, I don't want to have to think about it any more.  Thanks to all for following along and for caring and for anything and everything that you have done for me and my family.  I leave you with a look at what my neck currently looks like, guaranteed to look much different at this time tomorrow.