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.

Need some calm.

So here I sit, just a couple of days away from yet another unpleasant surgical experience, desperately searching for a state of calm.  I have never had panic attacks or anxiety much that I am aware, but somebody just flipped on a switch and I feel like I am going to lose my mind!  I honestly don't know what is happening and I am having extreme difficulties focusing on anything.  The world around me is not making much sense anymore...I wanted the last 7 weeks of treatment to help me and lead to this moment where I could still possibly get it all, and put this saga behind me, but my future does not comfort me.  What is it going to feel like, waking up from yet another surgery but this time I will not have the luxury of speaking?  Granted, I don't talk much anyway, but I have always had the ability to talk...just not the desire.  Tuesday, that will all change.  What will the desire to talk feel like when one lacks the ability to do so?  There have been many unpleasant experiences over the last 3 years as I have always plunged head-first into whatever treatment option gave me the best chance for long term survival.  As my available options have dwindled, the decisions have become more and more difficult.  I hate that I have to make them.  I hate that my family has to watch me go through this again and this time is likely to be much worse.  I know that I can have this surgery and eventually adapt to my new life, but the interim recovery/adjustment period absolutely terrifies me.  I am an emotional wreck right now and probably not the greatest person to be around.  
In lighter news, we had an awesome Stobb Family Thanksgiving celebration the last few days that helped distract the mind.  The San Francisco contingent made the trip in on Thursday and then we had a number of days of very pleasant meals and visiting.  I do better when surrounded by people that I care about, but all good things must come to an end and everyone headed their separate ways.  This is when the sadness and doubts start creeping back in.  Ultimately, I think it boils down to fear.  I am afraid, very, very afraid.  Afraid of the actual surgery, afraid of the recovery, afraid of the changes to my body, afraid of life after the surgery, and the list could go on and on.  I hope that I can hold it together well enough to face this next hurdle and make it out the other side with my sanity.  I have my doubts currently, but time will tell.
Maybe I am about to go over things that everyone knows already, but I feel like I need to lay out what is about to happen.  Tomorrow I will finish with my pre-operative appointments and meet with the plastic surgeon that will be putting me back together.  After that, it's one more night of sleep (if that is even possible) and then I report first thing Tuesday morning for my next body modification.  There is a long list of procedures that I signed my consent to last week.  There will be a complete laryngectomy and I will lose my voice and all ability to speak.  In addition, there will likely be another bi-lateral neck dissection and the insertion of my new breathing apparatus, a hole in the base of my neck called a stoma.  The separation of my lungs and my mouth will then be complete.  There will be a feeding tube inserted while I am out this time and I will have that for 8 weeks or so.  My surgeon thinks there will be lots of carnage in the area where they are working and that plastics will have some considerable work to do.  That could mean I lose my one remaining pectoral muscle or have a free flap from another part of my body.  It's not clear and they won't know exactly until I am on the table.  My surgeon tells me that the probability of me dying on the operating table with this surgery is very low, but I have had lots of radiation in this area and they have to be extremely careful with everything.  She plans to be in there at least 6 hours and then turn everything over to plastics to rebuild the area.  In all, I am told it will likely be a 10-12 hour surgery, so hooray for me!  I am afraid for the wake-up after surgery.  Very afraid for where my emotions are going to be when I wake up.  Again, I hope that I can hold it all together.  Likely I should be out of the hospital by the weekend and will probably stay in Houston for a week or so to get through all my follow up appointments.  Then it will be back to Lago Vista for some rest and relaxation (aka recovery).
My only option for communication after surgery will likely be the electrolarynx.  Eventually, after I heal and everything settles down a bit, I can have a follow up procedure that will give me the best chance for more natural like speech.  This link gives you some further reading on this type of procedure.
Maybe this was coherent enough that you were able to follow it.  Just trying to keep it together in the face of insanity.  What we need to happen is for this surgery to remove any and all traces of residual disease from my neck and I skip gleefully away into the sunset.

Been here before, sort of.

So here we are again in an all too familiar situation.  It has been quite some time since I have written anything, mostly because I had very little to say.  I could have chronicled all the crappy days of laying in bed with no energy to get up, an awesomely annoying rash all over my head, chest and back, and a mouth full of sores that make talking, eating and drinking a rather unpleasant experience.  I opted not to bore everybody with these happenings, but now I am headed down the next path towards what hopefully is many more years of life ahead of me.
To recap, I just finished a 6 week cycle of chemotherapy with infusions of Carboplatin, Taxotere and Cetuximab on weeks 1 and 4, and then Cetuximab only weeks 2, 3, 5 and 6.  The three drug infusion was the worst and led to about a week of really crappy existence, but we all made it through and can now talk about it in the past tense.  The Cetuximab gave me a rather bothersome rash that persists even today, but we are only 9 days out from my last treatment.  The goal with all of this was to stop the growth of the tumor that is near my larynx, and best case would be shrinkage of the tumor prior to another surgery.  Scans were yesterday, results obtained today at a visit with the surgeon who would perform my laryngectomy.  The tumor did indeed respond to treatment and has actually shrunk in size and measurable intensity on the PET scan.  In addition, there is no evidence that the disease has spread anywhere else in my body and this leads to the chance that one more surgery could possibly cure me completely.  Again, it is a very slight chance, but it is still a chance.  And so we are now in a similar situation to what we were in earlier this year.  I am now headed for surgery #4 to once again try to rid myself of my squamous cell carcinoma.  Difference is this time there is no post surgery radiation or chemo to help clean up any surprises they find once they are in there.  The surgery will either work or it won't but this is the choice that I have made and feel like this gives me the only chance for a cure and the best chance to maximize my time in this world.
This surgery will remove my larynx, thus disconnecting my mouth from my lungs and rendering me unable to speak naturally.  I will have a hole in the base of my neck (properly called a stoma) from which I will breathe for the rest of my days.  It will have a little filter on it that I change every day that keeps bad out and helps humidify the air before it reaches my lungs.  Initially, I will communicate with an electrolarynx held up to my neck when I need to say anything.  There will also be plastic surgeon involvement to reconstruct the area as need, how extensive this will be is unknown at this point.  Time will tell, I suppose.  I have speech options available, the best of which is a TEP (tracheoesophageal puncture) where they connect my trachea to my esophagus and put in  a voice prosthesis that I can, with a little extra effort, force air into my throat and speak quasi-normally.  The only thing I would never be able to do again is swim.  I would have a feeding tube inserted during surgery and likely would have it for a minimum of 8 weeks.  This is what I have to look forward to in about a week and a half.  December 2nd is the day.

Still muddled, but at least I have a path!!

Two posts in one day!  I feel like such an overachiever!  

I now have a path forward.  Turns out, when MD Anderson doctors let you know you are probably going to die, they like to then leave you guessing for almost a week as to what the recommended course of treatment is.  Granted, there are lots of doctors to talk with and options to mull over, but the one person left out of the communication loop is the unfortunate patient, in this case, ME!!  Anyway, we talked with the medical oncologist and got the recommended path forward that gives me any hope for a curative solution.  Many other paths lead only to palliative options, but this one gives me a small chance of a complete cure.  So that's it, this is where we go now.

First, let me say thank you to all of you following along with this journey.  Many of you contact myself, or Jessica or leave notes on the blog or Facebook, and I would like to give my heartfelt thanks for your concern, thoughts, prayers, and anything else you are doing directly and indirectly for me and my family.  This is not an easy road that I am forced to walk down and, if I had the choice, I would be walking elsewhere.  Honestly, from the beginning, this blog was meant to serve as a record of my struggles in writing so that when my sons were old enough to understand they could read what I went through and maybe find comfort in my own words as they grew older and understand the choices that I had to make.  It has now become so much more to me, and also (I think) to Jessica and those that chose to follow along.  It has been hard, harder than anything that I have ever done and I feel that it is going to be even harder in the coming months.

There are no more biopsies scheduled or appointments this week.  I can stay home and enjoy my house and my family and going to work and maybe just feel quasi-normal for a few more days.  The plan in place is to go forward with intense chemotherapy with drugs that I have not yet been given and hope that my tumor responds by either not growing or shrinking.  This part will last 6 weeks and will being next Tuesday, the 30th of September.  After that, I will have a CT scan to assess the progression of disease since my last scan.  If the results of that are promising and no new issues develop, I will go forward with another radical surgery roughly 4 weeks after finishing chemotherapy.  This, realistically, is my only CURATIVE option.  Everything else would fall in the PALLIATIVE category and I feel that if there is ANY possibility of a cure, I have to take that road.  There are still treatment options after this, but at that point they are guaranteed to be palliative.  I have to go the route of a possible cure for everybody, for my wife, for my kids, for my mom and dad, for my sister and her family, for my brother and his family, for the family that I married in to (morning sausage anyone??) and for the countless others that have shared my life and helped mold me into who I am today.  This disease has already taken so much: part of my tongue, my right pectoral muscle, much of the underlying structure of my neck, a normal looking neck, my original voice, my ability to lead a completely normal life and will take my life one day...but I will be able to say that I did everything I could to fight and I always did it with the intention of saving my life.  It wasn't and will not be easy, but the path to a cure is the direction I have always taken and will continue to take.  Just a small chance, but I will take that chance.

And so onward we go...the next six weeks will determine the rest of my life.  All I can do is fill myself with hope that my body responds to the chemo and that I can have the surgery.  Side note quickly, there was going to be another biopsy this week, but consensus is that it wouldn't be reachable by any standard biopsy means and so we forego that in lieu of starting chemo NOW.  Starting on the 30th of September, I will begin weekly chemo regimens with drugs including Carboplatin, Docetaxel and Cetuximab.  Pretty sure my tumor is already shrinking just seeing their names written down.  Here's to hope!!

A muddled path forward

Results came back in last week when I went for a biopsy and it is confirmed that the spot in question is again a recurrence of squamous cell carcinoma.  In addition, there are a couple other spots of concern in my neck area that I will have another biopsy this week to determine if they are SCC as well.  This is somewhat problematic.

My surgeon can remove the main tumor, along with my voice box and leave me with no voice and a hole in my neck to breathe through for the remainder of my life (however long that would be).  My surgeon's opinion is that left untreated, I would have less than one year of life left, if that.  She is confident that she can perform the surgery and that I would recover from it, but she doesn't know that it would extend that year because of the possibility of additional tumor growth.  That is why I need the additional biopsies this week.  IF it is only the one tumor and everything else comes back 'clean', there is a SMALL chance that the surgery could totally cure me of this disease.  If that is the case, then I would likely elect to have the surgery.  That would be the only way I will consider it.  These surgeries are hard.  They are hard on everybody.  Physically and emotionally.  All other prior surgeries have not produced the intended outcome, and I fear this one would be the same.  My thought process has shifted a bit and am leaning more towards treating this in a different manner.

It all involves decisions that are extremely hard to make.  Decisions that I never thought I would have to make.  Decisions that no person should have to make.  Decisions that greatly impact my life and the lives of all the people close to me.  I don't particularly want to die right now (or in the next year), so I have to be prepared to make the best decision that I feel will get me the most amount of time here on this earth.  Is it worth 6 months of surgery and recovery with a feeding tube and no voice if it doesn't gain me any more time?  I don't think so.  I would rather live that last year with my voice and relatively healthy until ultimately succumbing to the disease.  I am looking into clinical trials as an option, to see if my cancer responds to a different drug combination as to this point, all I have been given are platinum based chemotherapy drugs.  I also don't have all the info needed to make these decisions and so I feel rather helpless.  The last time I talked to the medical oncologist he was talking about analyzing the genetic makeup of the tumor to see if there are targeted therapies that show promise, so I need to talk to him about that.  Hopefully this week will help fill in some holes and I can feel better about a path forward.  Right now I feel like I am spiraling out of control and it is hard to get my thoughts and emotions in check.  I am filled with such unbelievable sadness and anger and a plethora of other emotions and they come and go in waves.  Some days are better, but others are so very hard just to get through.  
I keep telling Jessica that it will get better and I truly think it will, but right now it is so very hard to make it through the day without tears.  I can not give up fighting and I can not lose hope.  And so I continue on, full of hope that I find something that will work.  Something that will give me a little extra time with Bowen and A.J.  I am so torn, though, as I also do not want them to watch their dad just waste away and die.  I would do anything for them, they are my life and they mean everything to me.  I am so proud of who they are even right now at 7 and 9 years old and it makes me stand so much taller knowing that those two little boys are MY boys.  They are going to lead such amazing lives and go on to do incredible things!  And so we carry on!  We learn a little more each day and hopefully will have a plan in place and a direction that we start heading soon.  It will be a hard road ahead, but together we will prevail.  The darkness shall not overcome.

A BUMP in the road.

Anybody who may be easily offended should probably stop reading at this point in this blog entry.  This likely will not be a very pleasant read.
To quote Jessica from this morning, shortly after the first doctor entered the room, "FUCK!".  A truer word has never been spoken.  Not sure that any other phrase could encapsulate the feelings in a room better than those four letters did.  In hindsight, the news probably should have been expected when the first doctor to come in (a very skilled and pleasant surgeon named Dr. Pytynia) appeared extremely disheveled and began crying almost as quickly as Jessica.
Perhaps I should back up a step...I am now about 6 weeks removed from finishing my chemo and radiation treatment schedule to combat the latest re-occurrence of my SCC (squamous cell carcinoma).  Everything has been going great, recovering nicely in my new home on a hill, on a golf course, overlooking the hill country, etc...Taste is back, swallowing ability is back chewing quasi-normally, just overall feeling like a normal person again.  Only thing remaining out of kilter is the missing pectoral muscle and a Franken-neck that just takes some getting used to so as not to illicit slack-jawed stares by innocent passerbys.  So 6 weeks after treatment happens to be the perfect time to perform a CT scan on my head and neck and check out all the cool changes that have occurred since the last one in May.  Sounds innocent enough.

For better or for worse, I know now definitively that I will ultimately die as a result of this disease.  The only unknown now is the timing.  There is a spot on my voicebox in an area of concern from the last surgery, growing right next to the marker placed there during surgery to help aim the radiation treatment to the exact location.  This part of my body received the highest dose of ionizing radiation of any area, and this spot is very concerning for many reasons.  This is not how it was supposed to happen.  Up to this point, I have been fairly good about just taking it all in and accepting it for what it is.  I am now, for the first time, feeling very deflated and pretty freaking hopeless.  It's a very surreal situation when the doctors don't really know what to say, but they try their best to let you know that you are completely fucked in the nicest way possible.  Further radiation is not an option, my body can not handle it.  More surgery could be an option (depending on further test results) but will render me completely unable to speak and does not guarantee anything other than the loss of my voice.  It would also be another radical surgery and extremely complicated and risky and blah, blah, blah...  "Managing" the disease with chemotherapy for the rest of my life is also on the table, but there are many differing paths and right now the path is not clear.
Here is what I know...I will be going back to Houston next Wednesday for a couple of ultrasound guided needle biopsies.  Later that same day, I will have a full body PET scan. This scan will tell us whether it has spread to other parts of my body (likely the lungs) better know what path to take.  After the day of tests on Wednesday, I will again meet with the doctors on Thursday to talk about the results and what my best options are.  Put simply, I am in no IMMEDIATE danger of coming up dead, but am headed that way and will need to do something drastic to keep the party going as long as possible.  Also to be considered is my quality of life.  Very difficult and important decisions to be made in the near future.  I pray for strength that I can make them with a clear mind but such a heavy heart.  There is one best case outcome that I can think of so I will lay this out as it is in the overall realm of possibilities, just way down there on the probability scale.  It is possible that this growth occurred between the time I had surgery and the time that treatment really began affecting the rapidly growing tumor cells.  If this spot turns out to not be an active tumor, I could get out of this thing relatively unscathed.  Like I said, it's a possibility and  just about the only thing I can cling to at this point.  I will update again when I know more.

and so begins the SUCK.

It has been quite some time since I actually wrote anything down so I thought I would take a second to give an update.  Tuesdays are chemo days and one of the many artificial preservatives that run through my body leaves me very sleepless on Tuesday nights.  As I sit here tonight, I am officially over halfway through with my after surgery treatment.  I have only 2 more chemo sessions to endure and 13 radiations.  On top of what I have to do these days to address my health situation, we have also been trying to sell our house here in Katy and buy a new house in our new nesting grounds of Lago Vista, Tx.

Overall, I would say that I am handling the course of treatment fairly well, all things considered.  I am crazy tired all of the time and I have started the chemo cycle ups and downs.  Along with that, my throat is experiencing some very intense pain when swallowing, which makes for some good times when eating and drinking.  The throat pain in combination with uncontrollable cramping of my entire left neck/jaw muscles when chewing make eating an immeasurable good time!!  'tis a necessary evil at this point as I MUST keep eating and keep my weight up or they will put in a feeding tube.  That is not going to happen as long as I have any will left to fight, ergo, I eat.  I am almost two weeks from finishing and it is time to dig deep and finish strong.  My skin has yet to really show the burn from radiation, and I want to go back and see where it began really showing up last time.  I still consider myself very lucky through all of this and I continually pray that this is finally the last time I have to deal with all of this.  I am ready for some normalcy in my life.  Come on July 25th. 

Back in Katy!!

I received a call on Sunday that the machine in Katy was still not fixed and so I had to get my treatment at the medical center again on Monday.  This time, the appointment was later in the morning, so I didn't have to get up and going crazy early.  I also loaded up the whole family for the trip so that I could utilize the HOV portions of the freeways that i would be travelling on.  I also decided to try out the free valet parking service offered to patients receiving radiation where you get to basically drop off your vehicle right by the door that you have to enter to go in to check in for radiation.  That worked out extremely well, I must say.  They got me in and out quickly and back on my way toward Katy with my mask and accessories in tow on the hope that Katy would get their machine fixed.

An image from before surgery showing the lump growing at the base of my neck

Later in the day on Monday, I received a call again with the delightful news that the machine in Katy was back up and functioning and my treatments on Tuesday would be in Katy.  That was welcome news.  This Tuesday was something special as well in that I was going to have a double dose of radiation.  So the schedule was labwork at 8 am, 8:30 radiation treatment #1 followed by a trip upstairs for my chemo administration, then back downstairs after that for radiation treatment #2.  I was there from about 8 am until 3 pm and they did all they could to me for one day.  The double treatment was to make up for one that I missed last wednesday when the machine first broke.  It's interesting the things that I find out when I talk to various people immersed in this world.  Everything is based on statistics.  Everything.  It was a long day at the facility and it feels very good to be propped up in my old-person adjustable bed typing this right now.  Also, I got good news today in that my treatment will actually end on the 25th of July, not the 31st as I was expecting.  Here's to you July 25!

As far as how I feel, everything seems to be going pretty well.  I was extremely tired last week, but have felt better the last couple of days.  Maybe it was the chemo and now I had recovered enough to feel a bit better just in time for them to kick my ass with it again, or maybe Jessica's dengue fever that she gave me last week just dragged me down more than normal.  Either way, I hope to be in better shape as I approach the end of this week.  I can feel changes happening with my skin similar to what I felt last year.  I have such little feeling in my neck in general after all the surgeries that it is hard for me to track the small little changes, but it is definitely starting to feel somewhat burned.  All seems well as we charge head on into what lies ahead.  The picture below is from last year and shows the radiation burns on my neck, but also of note is the hairline on my cheek...that is not shaved, it is the result of radiation.  Where there is hair-no radiation; where there is no hair-radiation.

Picture from last year, showing the radiation burns during treatment

Week #1, WHAT A MESS!!

After-mask effects

If week number 1 is any indication as to how things will go, I am in for quite a frustrating experience in the coming month.  Day 1 and 2 went by without a hitch, but we hit a brick wall come Wednesday.  I got a phone call early that morning that the machine was down and that I shouldn't come in for treatment until they call me later that day.  No such phone call came until late when they informed me that the machine was still down and likely wouldn't be up any time soon.  When that happened last year, I could be treated on the other machine (Katy has 2 radiation machines), but this year that is not an option.  The treatment plan calls for a specific type of machine to be used and I can only be treated on one of the machines in Katy.  So what option does that leave us, folks?  My only option is to receive treatments at the main MD Anderson location in the medical center in Houston.  I don't like that on many levels, but I don't really get a choice with this either.  They don't want me missing treatments and I have already missed one.  Everything is cumulative and the radiation interferes with the normal cell life cycle so timing of everything is critical.  I guess things could be worse, at least I have another option.  So Thursday's treatment was done at the medical center where I had to find everything.  Katy is so easy, one desk where they send me to a single waiting area with people that I am used to.  The main campus is a whole different animal.  They have a single reception desk but then they disperse you to a different waiting area, I think labeled Waiting Areas A through K.  That's a lot of waiting areas.  I had to stop by the Katy location to pick up my mask and other associated accessories that I need during treatment to take with me so I can use them at the other location.  I had an afternoon appointment and I made it down there with no issues other than the building is a maze and where I parked was at the absolute opposite end of the entire complex from where I needed to be.  They got me in and treated with little issue, so at least it all worked out.  This was Thursday and they told me to leave my mask because I would be coming back on Friday for treatment.  Sweet!  That is some more good news.  This was followed by even more good news, that being my appointment time: 7:20 am.  That makes for an early morning.  That at least means I get everything finished first thing and can get on with my day, other than the fact that I had to go back to Katy and meet with my radiation oncologist.  All in all, my first week of radiation was a mess.  Hopefully they can get it fixed so I can continue my normal schedule.

Outside of the scheduling mess, overall I don't feel all that well.  I don't remember it starting this badly so quickly but I am a year older and have gone through this before so maybe it is quicker to affect me negatively.  Who knows, but I am definitely more nauseous this go round that I remember ever being before.    It started about Wednesday and has been pretty steady since.  Only other real issue is the tiredness.  I am extremely tired.  Focus is also an issue, I have a hard time concentrating on anything for extended periods of time.  I do remember that, just didn't remember the onset being so early in the course of treatment.  Bonus pictures today are images of my radiation field from two different views.

Two rads and a chemo

Treatments for Monday and Tuesday are in the books!  Much of my concern about the radiation treatments has bee alleviated at this point and the hope is that I can handle it 31 more times.  There is much to be said for reserving judgement until after you experience something.  Now that I know how long the actual treatment lasts, I am somewhat more relaxed about the unwavering tightness of the mask.  Don't get me wrong, I still hate it immensely, but the machine they have be on and my treatment plan only has radiation going through me for less than 2 minutes.  I also learned some good information regarding the tightness of my mask for this go-round.  It started with me asking if we could perhaps just cut the eyes out of the mask, so I could at least blink and have an unobstructed view.  The simple answer to the question was no, but the reasoning behind it makes sense.  The mask does fit tighter than the one from last year and that is for one very important reason.  Because I have had prior radiation, the position of my body must be even more precise than it was last year, and therefore the tightness of the mask.  They also take even more time to precisely position me before starting the treatments and make numerous trips in and out of the room telling me to wiggle up, down, left, right and then verifying the position via x-ray.  The position that I ultimately lie in sucks due to the fact that I am flat on my back (for those who may not know, I don't lay flat anymore, ever, and have not since 2012) and the position of my head is some magical angle that makes it feel like I have a grape in my throat.  That doesn't help my anxiety over the thoughts of not being able to breathe, but thus far, it has not been too overwhelming.

In addition to starting radiation, I also have one fantastic dose of chemo under my belt.  The chemo session starts with some IV fluids with some nausea medicine and some steroid action as well.  After that, there is a 30 minute rest and then the good stuff.  I am pretty sure that they are actually infusing me with unicorn tears or something equally as magical, but they claim that it is actually a poison.  The Cisplatin is administered over the course of 2 hours and is followed by another quick fluid flush.  Overall, I think it takes between 3 and 4 hours for the whole process.  I arrived this morning at around 7:30 and was finished just before 2, I think.  For all those mathematicians out there, I had other appointments and waiting room time in there as well, so refrain from judgments about my inability to understand how long 3-4 hours is.  Currently, I feel nothing more than very tired and have a little bit of a headache.  Can't be sure what the future holds but all is well right now.

Here is my Costco plug of the day, you can pick one of these up today for $30 off and be almost as cool as me: BROCK  I have had one since Christmas and I think it is my favorite worldly possession.  It goes where I go and if you can't tell by the text of the hyperlink, I have named him and he is part of our family.

Now that I have healed up a bit and the swelling has gone down considerably, I thought I would share a glimpse of the outcome of the latest surgery so you can visibly see what I have been trying to describe.  Disclaimer: there is, in this picture, what used to be a normal chest/neck area.  Currently, skin from the chest is up towards the neck, the pectoral muscle has been moved and there is a nipple (hehe, I said nipple) kind of just hanging out in a new location all together.  There is also a glob of clear tape and adhesive and marking ink that is in the middle of my chest and was used to mark my position for radiation.  That has since been removed.  Anyway, if you think you might be offended by a relocated nipple or some scars I would advise you not to scroll down and look at the picture.

Carnage from 5/13/2014

It's go time.

Father's Day-2014

I have decided to break radio silence now, on the eve of my official treatment start date.  I probably should have posted earlier as there have been some delays in the actual start, but I didn't, so there you have it.  I went in last Tuesday for a final simulation where they set me up on the table as if I were getting the radiation treatment, but they only take x-rays to set my position and finalize everything in preparation for starting.  I also met with my radiation oncologist and talked with him briefly.  He was still working on the exact treatment plan and was not quite ready to turn me over to the machine just yet so he put off the start until Monday, the 16th.  No worries on my part with that adjustment, my feelings are that the more healing time my chest-neck gets, the better.  Side note: I call my most recent surgical body alterations "chest-neck" due to it being just that.  A section of my chest that has been relocated to my neck.  Complete with crazy fast growing chest hair amongst mostly hairless previously radiated sections of my old neck.  Eventually, radiation will disable the hair growing ability of that patch of skin but for now about once a week I must shave my chest-neck along with the two patches of hair that grow on my face.  It will be interesting to see if chemo wipes out what little hair is growing on my face or if I will retain my ability to grow facial hair like a 7 year old girl.

I am not looking forward to tomorrow morning, as it is with most of the things that I have to do these days but I must proceed forward.  The new mask they made me fits tightly.  Way tighter than the one I had last time and enough so that I probably will have to take one of the anxiety medications they prescribed me last time for nausea in hopes that it will help me cope a little better with the helpless feelings I get when I am alone in a room restrained to a machine with very limited ability to move.  If things get bad, I can always bend my knees upward and the radiation technicians see that through a video feed and will come into the room immediately.  But, with the mouthpiece in, I can't communicate except through grunting and hand gestures, so it will be hard to get the point across that I can't breathe or whatever the problem may be.  My mind heads to interesting places when I am undergoing treatments, but through all of it last time I never had an issue, so I am hopeful that I can make it through this time as well.  So starting tomorrow, I will start my daily radiation treatments and they will last 6 weeks (33 total).  My last one will be on July 31st.  Chemo will be administered every Tuesday and it will be the same drug I received last year, Cisplatin.  There should be a total of 6 of those given to me once a week during the course of radiation, but it is dependent on how low my blood cell counts drop.  I hope that my body responds well to treatments and that I am able to get all 6 in this time.  

My sister and her husband did something super cool that I found out about this weekend.  They designed some shirts in support of me and my ongoing battle and they happened to come in when I stopped by her house last week.  The shirts are super cool and for me a nice surprise and reminder that I am definitely not in this alone.  I am including a picture of the shirts in this post so that you all can see them.  She still has some that she is selling for $15 per shirt.  I think this is where I will abruptly end this post as I am so tired I can't see straight and I have to get up in about 5 hours so my dad can drive me back to Katy in time for my radiation.  From here on out, I will be posting more frequently as I like to chronicle all the changes that start happening as the treatments progress.

The dates are set!

My mask from last year

So this week was fairly quiet on the cancer front, but not without some important happenings.  Jessica had one request of me last week and that was to not schedule any appointments on Wednesday as she had a hair appointment and would not be able to go with me.  Apparently I don't ask the right questions nor do I relay any information back to her in the rare instances that she is not with me.  That's probably a fair assessment.  Can you guess what day I scheduled every appointment this week?  Yep!  Wednesday.  4 appointments.  You're welcome, wifey!  It actually turned in to a huge debacle, but we all made it through relatively unscathed with Jessica's hair being the only casualty.  The big accomplishment is that I went through the radiation simulation and we are now officially on the books.  The simulation is a rather unpleasant process wherein I lay mostly unclothed on my back in a room on a machine that I am guessing is a CT scanner or something very similar.  A large gathering of people perform various operations throughout the process which basically is setting my position and target areas for the radiation.  All of them are people that I know from last summer and they all expressed their sympathy for my situation and their regrets that our reunion is due to my latest battle with recurrence.  They had to make me a new mask and this is the most unpleasant part of the simulation.  For those unfamiliar, the mask is used to hold me down to the table in the same position each time I receive the radiation treatment.  It is hard plastic and is molded around my head neck and shoulders and formed during my simulation.  It starts out as a flat sheet of perforated plastic that is heated in a water bath to make it soft and pliable.  The flat sheet is then placed over me and pressed down and locked into the table.  This time around, it was a bit more unpleasant because it seemed to have a lot more water on it than I remember and it holds me to the table very tightly.  Water was dripping down my nose and into my eyes and that, coupled with the fact that I can't move and have a mouthpiece in my mouth made me very uncomfortable.  Luckily, this time it did not last near as long as the last time.  I probably wouldn't have been able to hold out much longer, but I managed to remain calm the entire time.  I have yet to have an overwhelming claustrophobic moment, and hopefully that trend continues.  It is a very helpless feeling to have my arms restrained and my upper body immobilized in the manner in which it has to be for the treatments.  I left the simulation with my full schedule of treatments.  I start on the 10th of June and will finish on July 25th.  Radiation will be every weekday in that time frame sans July 4th.  Let's get this party started.
My official schedule for the day was bloodwork, followed by medical oncologist, followed by simulation, followed by meeting with surgeon.  I was told to see the surgeon prior to the simulation because they were to take my stitches out before I did the simulation.  I went there early in anticipation of some type of ordeal, and there definitely was one to be had.  I got my blood drawn and then went and waited to get in to see the stitch removers.  They weren't there yet, but they were kind enough to call and tell the ladies to NOT let me leave to go see the medical oncologist because I had to have my stitches removed and the simulation performed as there were no more time slot  available for me to get that in.  So I got to sit there and wait and play some Sudoku.  When my official stitch removal specialist arrived she brought with her the wonderful news that i would also be having a scope performed after the stitches came out.  Outstanding!  I do love a good scoping.  Again, for those unfamiliar, my scopings involve me, some lidocain and a long tubular shaped camera.  The lidocain is sprayed in each nostril while I breathe in deeply and helps to numb the pathways about to be probed.  The camera then gets to travel up my nose and head to it's final destination somewhere in my throat.  It's that magical place where I can do nothing but gag uncontrollably and tear up while the doctor calmly dictates commands for me to follow.  I have grown used to these and have worked up certain ways to try to control my reactions, but sometimes they sneak up on me.  Everything was in good working order and aside from some swelling all appeared normal.

The finish last summer

Once I was finished with the simulation and stitch removal, I ran upstairs to try to get in and see the medical oncologist for my last appointment.  I waited a bit, but he was able to see me late in the day and go over the plan.  They are giving me the same chemotherapy drug that I received last summer, Cisplatin.  This was a bit of a surprise as the last conversation with him, he told me that he would likely use a different cocktail.  The reasoning behind it sounds solid.  They talked it over and decided that what we did last summer worked.  I had active cancer cells in the left side of my neck and the combination of chemo and radiation took care of that.  This recurrence was outside of the main radiation field and received very little, if any radiation.  With my type of cancer, radiation is the primary fighting agent with the chemo used as a supplemental treatment that has been shown to intensify the effects of radiation.  We consider what happened last summer a successful treatment and therefore we will go ahead with the exact same course of action this time around, just in a different location.  I will receive the chemotherapy once a week, this time on Tuesdays.  As with radiation, I will begin on the 10th of June.  Again, let's get this party started!

A quickening.

Today was a GREAT day.  Something that I was in dire need of and a nice surprise after so many days of conjecture, unknowns and anxiety.  Don't get me wrong, there are still many unknowns, conjecture and anxiety to be had, but today I got a lot of questions answered and I feel A LOT more optimistic about my plight.  It began early at MD Anderson in the medical center, where by 9 am my catheter drains had been removed and I had a brand new, untethered lease on life!  The neck one was no sweat, but the two in my chest definitely turned my stomach a bit.  There is just something about feeling movement inside the left side of my chest when they are pulling something out of the right side of my body that gets my stomach churning.  They didn't take the stitches out around the transplanted flap on my neck, but those should come out soon.  At the time, it was going to be about three weeks, but after talking with other doctors later, it will be much sooner than that.  Having the drains out feels like such an emotional and physical lift for me, I probably can't adequately describe it.  A funny little story to come out of that was luckily not witnessed by anyone but me, so I was able to walk out of there like nothing happened.  As Jessica and the PA who removed my drains sat in the room going over my medication list, I put my shirt back on and attempted to stand up from the exam table to get my water and get ready to leave.  As soon as I stood I felt my stomach go a little sideways and I immediately lost my balance and would have fallen, had I not turned very quickly and grabbed the exam table.  I apparently didn't make too much of a commotion because neither of them heard or saw anything.  As we walked out of the reconstructive surgery department I laughingly told Jessica about my near miss in the exam room and it was decided that we should go grab some breakfast on the way home.  Whataburger Taquitos are the best thing ever!!
Some quick backstory: while at lunch yesterday, Jessica and I talked about serious stuff that is tough to talk about but necessary at times when dealing with something of the magnitude that we have in front of us.  She asked me if I thought that this was truly it and that if I believed that I was dying.  I basically told her what I really believe in my mind: yes, I do.  I told her I would consider myself VERY lucky if i ever saw my 40th birthday (that is 3.5 years away).  That is not at all to say that I don't have hope that I would live longer than that, I have much hope that I would live much longer than that, but she asked a direct question and I gave her an honest answer.  We talked about various other things mainly whether or not we should sell our house and move, uproot the kids and the like that would come with a pretty substantial life changing move.  It was a good, lively chat to have over lunch with some useful decisions being made as a result.
Now we can fast forward to this afternoon when I met with my radiation oncologist, Dr. Gregory Chronowski.  I like him a lot, he is very informative and knowledgeable and I find it very easy to talk with him and he will answer whatever I ask to the best of his abilities.  Jessica and I asked him a variety of questions, mine more had to do with the mechanics behind the spread of squamous cell carcinoma of the tongue in people my age, but also options should recurrence #4 occur, should it spread to the lungs, etc.  Also included were yearly life estimates/expectations with various best/worst case scenarios and situations.  We also went over the plans for me this time and what I could expect and the high risk areas and overall big risks with what we are about to try to accomplish.  We know this: I will receive a heavy dose of radiation to the area affected in the most recent surgery and where the most recent tumors were located.  He is unsure whether he will treat me more comprehensively and also hit the right hand side of my neck with significant radiation in an effort to "pre-treat" the area and possibly prevent a recurrence.  There are additional risks associated with this and he is going to present my case again to their multi-disciplinary "tumor board" next week and see what the team of doctors think would be the best course of action.  It was great to hear his plan and hear how aggressively, but also carefully he plans to be with regards to areas of my body that have been radiated previously.  There apparently is a huge jump in severity and possibility of permanent side effects in radiating previously radiated parts of the body.  The overall outcome of the visit was positively awesome with his position truly being that he believes my cancer to be fully treatable and (surprising to me) fully curable, even at this point.  I believe he used the phrase cautiously optimistic, but he was very positive in his expected outcome and it was refreshing to hear.  My surgeon also popped in while I was talking with him and she had a couple of questions for me in addition to just wanting to check in on me and say hi.  I like her a lot too, and I feel like they are both operating with my best interests in mind but also with the overall goal of curing me of this disease but also leaving me with as good of a quality of life as possible.  Dr. Chronowski also wants to get this party started as soon as possible and the plan that we left with today is that I am going to go in for my simulation next week and I will start radiation on the 2nd of June.  That is just 3 weeks post-op, but he feels confident that my body will be ready and so does Dr. Pytynia (my surgeon), so I say lets do it!  I am all for getting this thing started and finished as soon as possible so I can get on with my life.  It will still be 6 weeks long with concurrent chemotherapy, but I will finish in mid July!  I like this plan a lot and am ready to get it started.  While I am sure the road ahead will be rough, I am now much more ready to face it head on and fight with everything I have.  With that I think it is time to call it a night, but I should reiterate: it was a GREAT day.