Monday, May 25, 2015

I'm back, sans half a nipple.

...and just like that, they released me!  I still can't believe it, but I am currently writing this from the comfort of the house I grew up in.  I still have 3 small drains in me, but that discomfort pales in comparison to the discomfort associated with the hospital.  They just never leave you alone.  I will say that this MD Anderson experience was, without a doubt, the best one that I have had.  They listened to me, they were accommodating and they did everything they could to make me as comfortable as possible.  Kudos to them for being so remarkable, but I can say that I hope I never see them again.
The doctors say that everything looks fine right now for me.  I am recovering better than they expected and they saw no reason for me to just hang out in the hospital any longer.  They expected me to be in the hospital 7-10 days, and I was only there for 3.  I was on the pain pump until this morning, then I transitioned to oral pain pills.  They seem to be doing the trick, but I do have pain and at times it gets fairly intense.  My chest and neck area is definitely beginning to resemble film adaptations of Frankenstein's monster.  I also don't remember signing consent for them to remove half of my left nipple.  I asked the question yesterday, where is my left nipple?  Today that question was answered, well at least halfway answered.  It is right on a stitch line that sweeps across my left chest and it looks to only be about half there, but I will save some hope that it returns when I get the stitches out and the skin stretches back out slightly.  Either way, life will go on for now and hopefully we can get some normalcy in the coming months.
The followup plans are unknown currently, but we will likely have a couple appointments on Thursday and then we will be able to head back to our home in Lago Vista.  That will be AWESOME!  We will also probably have followups the next Thursday and Friday, but we can make that quick trip with no problems.  It's all worth it to be home and sleep in my own bed, that is a feeling that can't be replicated or replaced.  After next weeks appointments, I should get a break for a couple of months from any appointments and we can concentrate on summer.  We are in the midst of planning a driving tour of the western part of the US to give the boys some real life experiences with us while we are all healthy enough to do it (mainly that applies to me).  The next couple of days could be interesting, but only time will tell.

Sunday, May 24, 2015

Post-op, day 2.

Hi everybody!!
#Brony!!
You might notice that the name of my blog has changed...so I thought I would address that first off.  I decided to change it to reflect what the blog was about versus my personal feelings about this cancer in general.  I still feel that cancer can go and do what my blog title said, but I will release those feelings in other ways now.  Also, my mommy didn't like it and wouldn't even look at the blog, so I changed it so my dear mother could read it herself and not have to depend on my dad to update her after he reads it.  I think that helps them both out immensely and so that is what I have decided to do.
Thanks to all for all the continued love and support that we are getting, it has been amazing.  During these surgeries, I feel like I have the easy part, I just go to sleep and wake up when it is over.  Those closest to me are the ones who go through some tough times.  They have to sit out in the waiting room for hours at a time and let their minds run wild with possibilities while I am being operated on.  That would be super hard on me and I don't know how they do it every time.
I made it through surgery!  I still don't know where my left nipple is, but I did make out alive.  I have been somewhat surprised with my post-operative recovery.  It is going remarkably well.  I was up and moving around the morning after surgery.  I won't lie to you and tell you that it is all sunshine and rainbows, because it is not.  There is pain and there is A LOT of it.  It is no joke, but it is manageable as of right now.  I always want to get up and get moving because that helps me immensely both physically and emotionally.  Breathing has been somewhat of a chore as the chest drains are positioned in a way that cause pretty intense pain as I am breathing, but those were pulled out today.  That was a spectacular occasion.  It was immediate relief and it was much needed.
I am doing ok now, super tired and I have problems focusing for very long and concentrating.  I still have 3 drains in my chest that need to come out, but they are plastic surgery's responsibility and they will have to take then out when the output of the drain falls below a certain number.  That will be the next magical milestone.  They are also talking about releasing me tomorrow or the next day;  I would bet that it will be on Tuesday.  I need to get off the pain pump and until I do that I will be here.  That is truly amazing.  I could be at my home northwest of Austin one week after having my sternum removed.  These doctors are incredible.  
The nurse just left, I am so tired so I think I will lay back and fade out for the evening.  Just thought I would provide a quick update.

Saturday, May 23, 2015

Nailed It!

Good Morning!  It's Jessica here again.  I realized late last night, when I got a text from an old friend, that those who do not have a facebook account do not know that Bryce finished surgery.  He did it!

Let's start with his day yesterday.  They started on him at 8:22.  The 2 hour updates that I recieved were as expected; utterly useless.  Then Dr. Pytynia (head & neck) came out with Dr. Sepesi (cardio-thoracic, who was the lead on Bryce's surgery) came out together.  There is gross cancer removed, which is the giant growth that they can see with human eyes.  They removed all of that.  MD Anderson also wants to get clear margins on tissue surrounding gross cancer.

Let's say you have cancer in your pinky finger that takes up everything from the tip of your finger to the middle knuckle.  They want a certain distance around that to have clear margins, too.  They'll get a clear margin at the middle knuckle, but they'll actually remove the entire finger at the base/at your palm, because they get an extra half inch of "questionable tissue" out of the body.

There are 2 spots near his trachea that they consider questionable.  They can't see cancer.  They tested margins on everything that they removed.  A couple of lymph nodes came out.  They cleaned around and above his stoma and were able to keep it in place.  Without removing his trachea, these 2 places had to stay in.  And they do NOT like to take the trach.  There is not something they can put in place for that at this time.

Is it what we wanted to hear?  No.
Is it what we expected?  Yes.
Does it mean he still has cancer?  Unknown.
Did we expect that?  Yes.
Are there success stories out there?  Yes.

There were many surgeons that told Dr. Sepesi that this surgery was pointless and not to do it.  Bryce begged for the chance to fight like hell.  Bryce didn't take the news well last night.  But I told him last night and have reiterated this morning that everyone feels good about this!  This is exactly what we knew we were walking into and the doctors felt great about it too.  His job is to remain positive.  That is our job too.  Mine, his, our support system just keep the faith and #BStrong

Next phase of surgery was the plastic surgeon.  He used Bryce's left pectoral muscle to cover the place where the bone was removed.  He did end up with a small skin flap just under his stoma.  Bada Bing.  Bada Boom.  Done!

He is in an incredible amount of pain.  Not much sleep.  It comes in short patches.  There was a flurry of activity this morning.  But he is sleeping again.

I am going to blog about how moved I am with the amazing support we were shown later today on ChannelJess.Blogspot.com
For now, we try to sleep where we can.  I'll update on him again soon.

Thank you to everyone!  We love you all!  Keep praying!  We feel it!  #Bstrong

{I did this from my phone while B slept.  I didn't want the clicking keys to big him.  Forget about all of the random words that don't belong, the spelling errors & incorrect sentence structure.  I can only see about 2 sentences at a time}

Friday, May 22, 2015

It's go time!!

Good Morning Everyone!!!  This is Jessica sending progress reports on Bryce's blog.  It was a really great send off.  We got to see all of the doctors he has on his team and a few others that we hadn't met yet.  The most important visit was the reveal of the required surgical uniform.  Both Dr. P & her PA, Monica, their unicorn socks on.  There is going to be some down time until the first updates start coming in.  They should start sometime around 10:00.  Then they'll be about every 2 hours.  These updates do not contain much information at all.  Writing blog posts for all of that is pointless.  Unless it's big news, it will come in the way of facebook & twitter statues.

Now..... this surgery could be 5 hours.  It could be 10 hours.  We just don't know.  This is what all we learned in the last week or so.  The cardio-thoracic surgeon will be removing the bone cancer portion (see Bryce's previous blog) for 2-5 hours.  Dr. P will be there just in case the stoma needs to be moved.  They WANT to keep it where it is.  IF that isn't possible, she will move it further down his chest.  Then the plastics team will step in.  This is where they have left us with lots of "options." He wants to do the same pectoral flap procedure that he did last year.  This time they would use his other pec though.  That would take him about an 1-1.5 hours
{Let the IF's begin}
IF the area of bone is bigger than they think, they will use an abdominal flap.  It's the same concept of the pec flap, it's just from his belly.
IF they decide that they need to remove some skin, they will take a skin graft from his thigh because he still has a bad rash on his chest from the chemo.
IF things really do not go as planned for one reason or another, they will do a free flap from his thigh.

The first 2 flaps are something that happen under the skin.  Hard to explain, but they basically tunnel the muscle under the skin into a new place to help protect things.  The free flap gets its name because it is completely unattached from his body and "free" to move around the room, so to speak.  IF they get to that point, the plastics team will be working on him for a lonnnnnnnngggggg time.  Basically, it's like I said before.  We could be here until noon waiting for him to wake up.  It could be 10:00 tonight.  There are also chances of him going to ICU, but we just don't know.

I do have a couple of requests  :)))))  I'm putting on my most polite voice possible.  I LOVE that we are loved and supported.  I know that many people want to see him to show us love support.  Here are my requests though.  It will be our immediate families only through Sunday.  I'm sorry.  We have a big family and I will be trying to figure out when he likes to nap.  I want him getting rest.  LOTS of rest.  My second request is that visits are scheduled by myself.  Please text me and we will get you up here.  As much as we'd LOVE to throw a party and lift up my guy with praises and prayers, the rooms aren't very big.  And he needs to sneak in some naps during the day.  Again, I can't put into words how awestruck and moved we are by the well wishes, thoughts, love and prayers.  And having to put restrictions on people showing us some love feels very weird.  But it's best for him.  And the nurses.  The nurses get annoyed when we start getting rowdy and crowded in their work space :)  There's a part of me that delights in that.

Almost time for the 1st update.  Check the tweeter and the facebook.  I'll be posting soon.  In the meantime..... all positive thoughts!!!!  In place of skittles, rainbows and unicorns, I bring you rainbow unicorn butterfly kitty.  #BStrong

Time to #BStrong!

It's quite the emotional roller coaster that I tend to go through as the surgery draws closer.  The initial adrenaline rush of fight, fight, fight has had time to fester and it gets replaces with feelings of fear and dread.  I try to stay fairly positive as I go through each day, but sometimes the fear wins out and I get stuck wide awake in the middle of the night wondering what life will be like once the surgery is complete.  Those are the times when I have trouble convincing myself that things are going to be OK.  Today we are feeling good about what is to come and are very hopeful that the surgery has a successful outcome and we can continue on for a few more years.  The word of the day is RELAX, and the theme of the week is BE FLEXIBLE.  
Everything is now set and we know what lies ahead...well, sort of.  I will report tomorrow morning at 5:15 am and the surgery is scheduled to get started about 7:30 am.  We met with the plastic surgeon this morning and anesthesiology this afternoon.  Jessica was very displeased with our dear friends in the plastics department, but our appointment with them was awesome and we learned a lot more about what to expect and what could possibly happen.  If everything goes as planned, they will remove portions of both clavicles, the top two ribs on either side of the sternum and the top portion of the sternum itself (the manubrium).  Once the resection is complete, the reconstruction can then begin.  The most optimistic of plans is to "simply" take my left pectoral muscle and fill in the hole that was created and then we are finished.  That is a very simplistic view of it, but that is what we hope happens.  There are all kinds of other options that I have given them my consent to undertake should it become necessary, but everyone is very hopeful that we can get through this without the more dirty options.  It was comforting to hear him say that I should be able to do everything physically that I can right now even after the surgery.  I needed to hear that today.  We actually walked out of plastics feeling really good about everything and I have been pretty calm about what is to come all day.
I currently have 3.5 hours until I need to "get up" for surgery, I doubt much of that time will be spent sleeping.  I am not overly worried or anxious or nervous or any of the usual emotions that I would normally be experiencing.  Instead I just feel really lucky right now and thankful for all the wonderful people that I have in my life.  I am currently at my mom's house in Houston, here with me are my parents, my wife and my brother and sister.  It feels awesome to have everyone here under the same roof where we grew up together and I hate the reason that we are here, but I love the fact that it is happening.
Anyway, just thought I would get one last post out there before the surgery commences.  I am rather tired and just discovered the most incredible cable channel at my parents house, Chiller.  I think it was made just for me.  
Just a quick word about tomorrow...Jessica will be updating my blog throughout the day with news as she gets it.  She has done an amazing job the last two surgeries of chronicling the day and I can't imagine that this time will be any different.  I will pick back up when coherent enough to do so, but for the next day enjoy what she has to say.

I can't thank everyone enough for their support throughout this journey, it helps keep me going on a daily basis.  Tomorrow, I just have to show up, let the doctors do what they do and wake up cancer free for the first time in 3 and a half years.  I shall do my best.

Thursday, May 14, 2015

Nothing is for sure, but more is now known

Thought I would throw out a quick update for those interested.  First of all, the socks were a HUGE hit with everybody at the MD Anderson Katy facility.  Might have to get a few more pairs on order soon.  I know that is what everyone is most interested in, so that is what I thought I should start with.  In addition, I was presented with one amazingly awesome shirt from my favorite PA-C in the world, mjanik1!  The shirt paired magically with the socks that I got for them and they assured me that the socks would be part of the surgical uniform worn next Friday.  Hopefully we can get together prior to surgery for a rainbow farting unicorn pre-operative picture.  Then I can introduce to the world the beauty that is my head and neck surgical team.

So we have to wait another day to get the final word on the surgery.  The cardio-thoracic surgeon will have the final say on whether or not we are a go.  The tumor has definitely grown in size over the past 5 weeks or so while I was doing chemo, but there is no evidence of further spread throughout my body.  The no further spread part is the key point here.  Any evidence of further spread would likely completely rule out surgery.  The growth is not good, but hopefully it is not to great in the surgeons opinion to rule out the surgical option.  I am still holding on to hope that the surgery will happen, and we have been given no substantial indication that it won't.

Now we wait another 22 hours or so until I meet with the next surgeon and we can do nothing other than hope for the best.  I will do my part and I trust that all out there that read this today will do theirs.  Fill this world with your prayers, your positive thoughts, good vibes, chi, prana, pneuma, mana, ruah or whatever else you can and I think we can convince these surgeons that I still have a lot of fight in me and this surgery gives me the best chance!

Hopefully I can give a better update tomorrow, but for right now we are in a holding pattern.  Stay strong, think positive and get ready for the awesomeness that will come.

Wednesday, May 13, 2015

Pre-op scans complete, results to follow...

The nights following my scans are usually the worst!  I expect that tonight will be spent "tossing and turning" and  not doing much sleeping, which is what I want to be doing.  You might notice that I had to use quotation mark for the phrase tossing and turning, but that is only due to my inability to actually toss and turn at night in bed.  I sleep on my back and only on my back, which is more than frustrating because prior to any surgeries, I was a total stomach sleeper.  I will say that my incredibly amazing bed makes this new sleeping arrangement bearable and I would not trade that bed for anything right now.  I was skeptical when we got it, but now that I have it I couldn't think of living life without it.  Life continues and we adapt to the new challenges that are thrust upon us.

I hate the seemingly endless wait between when I get my scans and when I actually talk to a doctor about what those scans reveal about my situation.  I always expect the worst!  Tomorrow I will find out whether or not we will go ahead with surgery as we have been planning or if the course is to be altered.  The pessimistic side of me is sure that the cancer has spread somewhere else and that the surgery would not do me any overall good and will be canceled.  That side wins out on nights like tonight.  The other side, which remains eternally hopeful, says that the scans will show that the cancer really responded to chemo and that this surgery is a go and we still have a chance to beat this thing.  That side gets me through most days, but not tonight.  I can take that trade off.  I will take one lousy night not sleeping for 6 nights of good sleep during a week.  Nights like tonight don't happen often, but they happen.  I think it's inevitable.  At some point reality does set in and I realize that this battle is long and hard and I have an incredibly steep uphill journey ahead of me and at any point I could slip right back down to the bottom.  For the most part I stay fairly level headed and positive but I always retain a certain amount of understanding of my situation.  Nights like tonight remind me that there is so much in this fight that I have no control over, but that is no reason to give up hope.

Tomorrow I see my favorite MD Anderson personnel, the team of people at the satellite office in Katy.  My head and neck surgeon and her PA are two of my favorite people ever!  I came prepared this time and have gifts for them.  They are getting some of the finest rainbow farting unicorn socks ever to come out of Korea.  Those are two lucky ladies, let me tell you.  The only other person I have every given rainbow farting unicorn socks to is my wife, so they are joining an exclusive club.  I could not imagine being in a situation where I had to tell someone that they are going to die and then move on to the next person and go about my day.  Maybe you get used to it or maybe you don't, either way I wouldn't want to do it.  I am not sure what tomorrow holds in store, but I am ready to face it regardless and keep fighting as best I can.  Thanks for following along with us and for caring enough to read my random banter.