Maybe it wasn't about the cancer....

Let me start by telling you all that three or four years ago my dad tried to get a heart stress test done because he had some pretty strong family history of heart problems and wanted to make sure his own heart was doing ok.  Well, insurance would not cover the test because he did not have a medical need for it.  That was then....

Since Dad has had cancer... he seems to be in "medical need" for every test known to man!!!  This would include the heart stress test.  So a few weeks ago he had the test performed and it showed some abnormalities so they wanted him to have another test done.  This test pumped a fluid into him that allowed them to see the heart and how it was pumping and was able to show them all the veins and arteries surrounding the heart.  We honestly didn't expect them to find anything of consequence, but given the strong family history, it was an important test to have done.

Well, they did find something... they found that a main artery that pumped blood to the entire left side of Dad's heart showed a significant blockage.  They said that without fixing this, he would surely eventually have a major heart attack which he would probably not live through.  

So, the very next day (last Wednesday), he went in and they put a stent where the blockage was.  It was actually a pretty minor procedure.  They insert the stent and a camera through his inner thigh and up to his heart... it's kind of incredible... Dad was actually awake during the procedure.  They said the blockage was more significant than they had thought so it was good he got it taken care of right away. He had to stay in the hospital overnight just so they could monitor him because of the blood thinners he needed to be on, but was released early the next morning and there was absolutely no recovery needed.

This was an incredible surprise, miracle, shock, blessing, and I am not sure what other feelings this all brought on, but we are so glad that it was something that was caught and taken care of quickly and easily.  It also brought some frustration that Dad was a bit of a ticking time bomb and a frustration that our insurance companies don't seem willing to fund preventative testing that would keep all of us healthier and catch more problems earlier on.

This also brings on the thought of what a miraculous recovery Dad had from the cancer and surgery, that maybe it wasn't about the cancer... maybe cancer is what saved Dad's life.

Small ordeal and new scans being performed this week!

I thought I would go ahead and do a follow up of my dad's post... I read posts from an EC site where people ask questions and give inspiration and hope to EC survivors and families of those affected by EC.  Reading these posts was both informative and beneficial but also terrifying!!  Most people send messages because they are experiencing complications or looking for new hope in a difficult situation, so as you can imagine, I find my dad's recovery to be nothing but miraculous.  Normally I don't like to boast about Dad because his head is already so inflated that it can hardly fit through the door, but I gotta say he really has handled this cancer thing like a rock star.  Dad is a 'matter of fact' kind of a guy and when a hurdle is in his way, he doesn't focus on how hard that hurdle is but only what the quickest and most efficient way to get over that hurdle is.  It's a perspective I need to gain, that's for sure!!

On my birthday last week, Dad was having a little chest pain-- he said it was hurting to take deep breaths.  Being the caring and loving daughter I am, I told him "Suck it up dad, it's my birthday! You just don't want me to whoop you in dominoes!"  -- Yeah, I know, I'm nice.  So, he sat and played dominoes and drank a smoothie and I didn't think much of it.  Then mom called Sunday morning to say he was in the ER because it really started hurting in the middle of the night.

What they found was that a wall of Dad's heart was looking a little swollen and there was some fluid built up.  It was quickly remedied by taking a pill which lessened the swelling and the fluid dissipated.  

Fluid build up is extremely common after surgeries as organs are reacting to the body being opened up and foreign objects being handled inside the body.  Dad will find out more specifics when he goes into the doctor this week, but it looks like something fairly common and a quick fix and he is back to himself again.

This week is a big week.  Dad goes in for all his testing that he will do every six months (I think) and will let us all know whether the cancer really has stayed away or not.  It's a scary thing as esophageal cancer does have a high recurrence rate.  However, one benefit to Dad's little ER overnighter was that they did a CT scan while he was there and that looked clear.  So, we aren't expecting anything but good news.  I will post more after the results come back next week.

No News really is GOOD news

I haven't posted in a bit, sorry about that, but no news really is good news in this case.  Dad is doing awesome!!!  Can I just take a minute to say how amazing that is!? I'm talking miracles.  Due to my slightly controlling and obsessive personality I have done my fair share of research on the subject of esophageal cancer and heard all the statistics and the complications and all the "what ifs" and have sufficiently freaked myself out on a number of occasions.  To this I say to myself, "I should have listened to my dad".  It's true, I don't say that sort of thing all the time because frankly, I try not to listen to him, but he was right about all of this.  From the very beginning he treated this all like an inconvenience and a bump in the road and thus far, that's exactly what it's been.  Maybe the miracle was that Dad was right.

Recovery wise, the man is a champ.  He goes on outings each day, runs errands, etc.  He is eating... and I am not just talking a bite here and there, he has been wolfing food down!!  He does need to eat smaller meals (probably the size the rest of us SHOULD eat regularly) and he feels pretty dang full if he over eats, but he wants and needs to eat more often.  So, about every two hours he is on the hunt in the kitchen for something to dig into.  Since his whole digestive system has had a bit of a shock (taking out a portion of it could do that), he is still adjusting to its new...'schedule', but I think that would be typical with any major surgery... just adjusting to the differences in your body.  Dad is still getting fed through the feeding tube at night but plans on asking them if he can be finished with it at his next appointment because he is getting plenty of nutrition.  

Dad has also been hitting the gym with us on some mornings.  Sadly, he isn't in racquetball condition yet but he walks the treadmills.  It's good to see that he is being so proactive in his recovery.  It still makes me laugh how the nurses kept telling me that Dad must be in really good shape or when they asked me if he was an athlete.  SUUURRRRRE he is. Yesterday he wore some running pants that I had not seen him in since New Years.  Something mysterious happened... Dad lost his butt.  Someone must have stolen it... it may have been me.

His incisions look good-- I made sure to check them out myself last night during our dominoes marathon.  They hacked him up good but all the scabbing (ew) and stuff is all but off so I think the scars will be minimal eventually.  I still think they look awesome and wish I could get some scars but not have any surgeries or be hurt or in any pain to receive them.  Cosmetic scars?  Yeah, I doubt that will ever turn into a 'thing' people want.

Last week my uncle and aunt came to visit... I will post more about that next time (have to get some pictures from my mom) and I will also post about my parents new addition--- a new addition equipped with two remotes.  I know, I've got your mind reeling. 

Quick Update

Things are going great.  Dad went in on Tuesday for some testing to see if everything has been healing as it is supposed to.  So far so good.  He is having some pain in the incision in his back (he has one on his upper back and one across his stomach) but that is usually what is bothering him and what usually is prompting the pain meds.  The doctors biopsied all the esophagus and lymph nodes they took out during surgery.  They could see no cancer though one lymph node did have active cells which would categorize him as N1 (not a cancer stage... they won't probably ever claim "cancer free" but he is as close as they could hope anyone to be at this point).  The doctors didn't seem too worried about his as they took out all lymph nodes that they thought would possibly be infected so we're hopeful that this was the only one.

This particular cancer has a really high chance of either recurrence in the same area or somewhere else in the body.  Clear scans for 2 years is the biggest hurdle, 5 years is amazing and longer than that is the goal!  While this cancer does have a high chance of recurrence, judging how amazing Dad has done thus far, there is a high chance he will be in the percentage that never has it come back.  The doctors were incredibly impressed with Dad and his results so that certainly says a lot.

Right now Dad is enjoying a diet of liquids, soups and ding dongs.  I am not sure why ding dongs, but we all have our own cravings right?  So far so good.  He will still be being fed through the feeding tube but hopes to have that tapered off within the next 2-6 weeks.  The amount of time and amount of food he will be fed through it will decrease as he is able to eat more.  The good news is that he actually gained a little wait post surgery which is WONDERFUL... but I think he is still looking scrawny.... we'll get him bulked back up in no time!

Dad has been getting out each day.  He is supposed to do a lot of walking and he is also getting a little restless at home so the outings are helpful.  My mom says he is like a newborn, awake for a couple hours, sleeps for four hours, awake for a couple hours, sleeps for fours hours.

This weekend company comes into town (my dad's brother and his wife), my parents get their new bed delivered and our neighborhood pool opens!  Ok, that last one is the highlight of our little home's weekend but doesn't have anything to do with dad.  I doubt he will be going in the pool for quite awhile.  

Sorry for the lack of pictures... I'll get on that.

Surgery Day - 5:00 pm

So, we all just saw Dad in the recovery room.  He was in great spirits... GOOD DRUGS.  His epidural is working well and he has been pressing the button as needed and maybe even a little more than needed :).  He looks good, though he has a large tube coming out of his nose.  He said it isn't bothering him, but he is also a little loopy right now.  He has drainage tubes happening and his body is yellow from iodine.  He still has his cool socks on and said he is looking forward to his Philmont beard that he will have by the time he exits the hospital.  

Dad startled himself when he looked at the clock and said, "the last time I looked at that clock, it read a completely different time and that was just a couple minutes ago!"  Sure Dad.    He was also busily giving my brother Pat directions home, so he is pretty coherent.  

Mom will be holding down the fort tonight and I will stay til after dinner sometime and then plan on being back for my mom to be able to get some rest (remember, they'll be waking him every hour).  Lots of hospital trips this next week or so.  Pray for a fast recovery!!

Surgery Day - 2:30 pm

Dad is out of surgery.  The nurse who gave us the news last said that it would be at least a couple more hours so when the floor nurses came to show us Dad's room, Mom, Evan and I went to drop off some of our stuff.  Well, of course, the doctor comes to tell us Dad is out of surgery.  We were pretty frustrated that the doctor wouldn't wait for us and that the nurse in the waiting area refused to let us see the doctor after we came back.  After all, it was the MDA nurses that took us away from the waiting room!!! 

Anyway, Dr. Swiffer---as I like to call him---actually his name is Dr. Swisher (the surgeon), came and talked to Kim and let her know some details of the surgery.  He said everything went well.  There weren't any visible signs of cancer seen at all.  They took about 1/3 of his esophagus and about 1/5 of his stomach (as planned).  They will do testing on the removed tissue to see if there is any cancer present in them.  

Right now, Dad is in recovery.  We haven't been able to see him.  They are waiting until he wakes up before anyone can go see him.  They said it could take a couple hours and since Dad likes his sleep, I don't doubt that will be the case!  Dad did have an issue with the epidural that he was given, but since we weren't here, we don't know the details of that other than they are going to redo the epidural.  This will help with his pain management as it will numb him from the upper chest down to his stomach.  So, hopefully that new epidural will work for him!

They will have him up and moving today or early tomorrow.  He won't receive anything via his feeding tube or by mouth for 3 days and so will receive nutrition solely through his IV for those days.  We don't know how long he will be in the hospital... they said some have left in less than a week and others have stayed more than two weeks.  10-14 days is the norm.  Dad will have drainage tubes put in and those will probably be in for a week.  Also, he will have a tube going up his nose to keep his stomach decompressed so there's no leakage.  I hope it comes out quickly as Dad has been saying he is worried about the discomfort of that particular tube.

Nurses said that they will be coming in hourly for at least the first couple of days to check his vitals and his breathing... so he may not get that much rest after all. 

We are all so anxious to see him.  Dad said he thinks he might get the wrong idea when he wakes up and sees his entire family circled around him!!!  :)

I will post more later after we see how he is doing physically and have a better idea of how he is handling his pain.  Thank you all for your prayers and love.... we are feeling it... BIG TIME.

Surgery Day - 12:30 pm

We just received the latest update...they aren't very detailed in their updates...  

They have finished loosening up his innards while laying on his back and have just turned him onto his side to do the same from the side.  Apparently, there is a lot of loosening and moving around of one's insides before the actual surgical/cutting process begins.  All of our insides are held into place otherwise we would all be sloshing around and all of our guts would be in our feet... so they have to move things around to get to Dad's esophagus.  

So, that's where we are at.

We are all hanging out in the waiting area.  There are easily over 150 people here in the waiting area.  There are 30 operating rooms and that doesn't even count the outpatient surgeries.  That is so crazy that this hospital is booked up every day with that many people sitting and waiting to hear about their loved ones.  

We have kept busy with card games this last couple of hours.  Most people are just sitting around, talking on cell phones and staring at each other.  Maybe people are thinking we are strange because we aren't sitting around sulking and staring at each other the whole time, but seriously, that would make the time go SO slow!  So, we are trying to keep our minds occupied and the time goes a little faster... I mean, it's still slow, but it does pass a bit more quickly.

I suppose everyone copes differently... One of our 'favorite' fellow waiting room family members passes the time by whistling "Amazing Grace" and "Moon River"-- LOUD and CONTINUOUSLY!  Evan is about to karate chop him.  Kim is getting irritated by loud cell phone talkers.  I am busily playing games and blogging.  Pat continues playing video games on his laptop--exactly what he would be doing at home.  Mom is playing with me. 

Next update in about 2 hours.

Surgery Day- 10:20 am

UPDATE:  Nurse came to update us.  She didn't say much.  She said the surgery started at 8:29am and they hadn't taken anything out yet and that we had awhile to wait.  Next update is at noon.... or around then.. they were 20 minutes late giving us our update.

MEANWHILE:

We finished a 1000 piece puzzle before the first update.  woo hoo!!!  My job as entertainer has been successful thus far.  Next update in a couple hours!!!

Surgery Day- 8:00 am

Dad went into surgery about a half hour ago.  He was feeling good this morning and is ready to get this surgery over with.  They said the surgery should be about 6 hours but could go longer depending on how fast things go and if there is any more work they need to do once they see what everything looks like inside.

We left (all 6 of us) for MDA early this morning...4:30am... I don't think my brother Evan has ever been conscious that early.  They picked me up and I came running down the drive way with my backpack full.  Dad rolled his eyes at my over-preparedness but I just hope I packed enough.  After all, I am in charge of entertainment. So, the pack is filled with games, puzzles and other fun things to help pass the time.

Dad got these really cool socks...or are they leggings because they are open-toed?  Not sure, but they are awesome.  They are nylon so you can see his leg hair through them... classic.  Last night I bought Dad some slippers.  He gave me the assignment of picking him up a slip on, normal pair of rubber soled slippers.  Well, that was what I was intending on getting him, but I saw some really cool neon green slippers that are designed with mop-type bottoms that clean your floors as you walk!  How cool is that?!?  Well, Dad didn't think they were very cool.  Fine, I will keep them.  I bought his pair of boring, brown, slip on slippers just in case he didn't like the neon green anyway.

Mom left Dad with a male nurse who thought Dad was hilarious, so I am sure Dad was happy enough before he slipped into dreamland.  He gets an epidural.  Did I mention that yet?  Yup, this makes me happy for some reason... I guess because he gets to experience a joy of child birth.  Maybe he will appreciate us women in his life a little more :).

We should be receiving an update sometime around 10 and then every couple hours after that.  I will keep everyone posted.

Good News Keeps on Comin'!

Just a quick post to inform everyone that the PET scan and CT both came back and showed remarkable results.  The cancer is not found at all.  There is a little thickening in the wall of the esophagus, but no actual cancer.  This is amazing and wonderful news to receive.  

You may be wondering, like I had been, why one would still do surgery when the scans are clear.  Well, the chances of this particular cancer returning to the same location is quite high... I think my dad said 50-75%.  And if for some reason we didn't do the surgery and the cancer did come back, the surgery that would need to be performed would be much more involved and difficult to recover from.  Plus, I'm sure it would be hard to get over choosing not to do the surgery and then have it come back with a less than positive outcome.  So, we go with what gives Dad the best odds... surgery.

We are getting all ready for surgery on Wednesday.  Tomorrow Dad meets with the surgeon to figure out how involved the surgery will be.  I must be kind of sick or something, because I am actually looking forward to Wednesday.  You see, it will be the first time our little family (all kids plus parents) go somewhere together without spouses or children.  It will be like old times, except you know, we will be dropping Dad off to get hacked open....  I mean, for him to receive a procedure to ensure his continued health :).  MD Anderson has lots of puzzles all around so I am eager to get my hands on a few of those, plus I have so little quiet time that I have a whole list of things I want to work on while waiting in the hospital.  I know what you are thinking... I AM sick.  Well, it's true, but honestly we are all a little nervous, but mostly eager to get this thing dealt with.  Good news keep on comin'!  We love it!

I'll post tomorrow to let you know surgery details.

SURGERY DATE CHANGED!

Latest news:  Surgery date has changed.  The new date is May 12th.

Update and Surgery Date

Total post drought, huh?  No news is good news folks!  Don't you know that!?

Spring is here!  Isn't it wonderful? When I think of Spring it just makes everything feel fresh and new... a rebirth of sorts.  It feels as though the dark winter has passed us (as dark as Texas winters get anyway) and now we are moving into a season all anew.  I suppose that is how our mindset has been lately.

We are in a new chapter of treatment.  It's a good one.  It involves stuffing dad's face with as much food as possible-- which has resulted in a 7 pound weight gain thus far for both Dad and myself-- and getting him a bit more buff and healthy before surgery.  My dad borrowed some of my husband's shorts because his waist size has shrunk quite a bit.  We are down to 34s and those are large!  Hopefully we can keep it where it's at.  I'm really going to have to rethink how I feel about my body if my dad starts being able to fit into MY pants.  Nevertheless, while he has lost a bunch of weight, he also has gained back 7 pounds in just a couple weeks and he doesn't look sickly or anything.

Easter weekend Mom and Dad went up to Dallas to visit those OTHER grandchildren.  That's right, 2/5 (almost 3/6... or 1/2 if you are simplifying your fractions) of their grandchildren are in Dallas and belong to my sister.  This is a picture of Dad and Kyra dying eggs together.  Miss those nieces of mine!

In other news Evan was home this past weekend and Pat (both my brothers) is here this week.  Of course, I neglect to get pictures of them with Dad as always, but they've been around.  Instead I treat you with more pictures of myself and Dad.  I've been making it my mission to harass Dad to work out.  He's wiped the floor with me playing racquetball a few times which I am finding quite embarrassing and is starting to effect my self esteem.  Nevertheless, it's really good and fun to play racquetball with my dad again.  Dad seems like his old self again, at least for now.  We are soaking up his 'normalcy' and aren't thinking about cancer so much right now, though it's there in our minds... and in dad's esophagus.

Surgery has changed to May 17th.  That's a Monday.  34 days away.

Two steps forward, One step back...

Turns out I exaggerate a bit... I don't really consider this a character flaw, but more a strength of mine.  I am more of a "cup half full" kind of gal.  Perhaps this trait came threw a bit on my last post. 

So, dad had one really great day where he was able to swallow normal food.  It was a good day and one that looked incredibly promising and seemed as though he was really turning a corner.  This looked like evidence to us that everything was going to be normal again.  Of course, that isn't how cancer works!  DUH!  Us "cup half full"ers are so naive sometimes.

As it turns out, not much has been staying down since that one good day.  This isn't fantastic as it means that dad has lost even more weight. -- Apparently, the way that weight loss works is that the less you eat, the more you lose.  I know, total epiphany to me too.  I had to write it here to perhaps document that philosophy for my own future personal use. -- Anyway, speedy weight loss is a dream to most of us but we are trying to keep the pounds on dad not have him losing anymore. 

After this 6 week chemo and radiation cycle, he will have 6 weeks off and then he will undergo surgery.  This will be a pretty big surgery which will basically cause him not to be able to swallow food for many weeks and he will probably lose a good 25 pounds over that time.  Therefore, losing all this weight now is NOT AN OPTION!  Sure, we plan to fatten him up plenty the six weeks prior to surgery but we don't want our job to be harder than it has to be.

My dad is a practical sort of guy.  He fully intends to keep trying to eat as many calories as he possibly can, but he also knows that he might also need to supplement this effort with some help from the doctors. Monday he goes to MD Anderson for his big day where they hook him back up to the chemo drugs and zap him good with radiation (he goes for radiation 5 times a week M-F and receives the chemo drugs through his port M-F as well before being disconnected on Friday).  After Monday's appointment, I will talk about this more.

On the brighter side of things, we went to Pappadeaux's last night and dad was able to down some most delicious lobster bisque.  He said he felt a lot better after that.  I guess you don't really pay attention to how your body reacts to the fuel of food until it doesn't get what it needs.  So, the solution as I see it is for us to eat at Pappadeaux's more often.  Done and done.  I mean, after all, has anyone tried that crab & artichoke cheese dip?  It is so delicious, I could drink it up with a straw.

Meeting more doctors

This is an excerpt from an email that my mom wrote out to us kids and other family members after they met with a couple more doctors.. I couldn't say anything better than she says it here...

We met with Bill's surgeon. We really liked him. He is the Head of the Department. So this makes two department heads on our team. Bill won't actually have surgery until sometime between May and July, but he did go over the actual surgery. He really didn't give us any new information. When they remove the section of the esophagus, they will also remove part of his stomach (he gets a free bypass with this). He will probably never have to worry about his weight again.

We also met with his radiation doctor. Again, we really liked him. Don't know if he is department head or not, but he is good looking, so that makes him okay in my book! Bill will either start Chemo and Radiation on 2/16 or if we get the clinical trial we are hoping to get, then he will just start chemo alone on 2/9 and the chemo/radiation combo will be held off for two months. We will know on Thursday if he gets the clinical trial or not. I guess the biggest question we were left with at this appointment is whether they will use proton or photon radiation depending on what our insurance will cover. Either is good, one is just a bit better at protecting the heart since the esophagus sits right behind the heart. Other then having to go down every day for six weeks, it sounded like this is all going to be bearable. The good news we got from this appointment is that we get free parking during radiation days! We thought we might have to take out a second mortgage on the house to pay for parking at this place! If they aren't making money on the medicine, they are making a ton on the parking!!

Our next step is on Thursday. He will have an EKG, a pulmonary test and see the oncologist again. At that appointment we will learn which treatment option we will have and he will finalize the orders for the upcoming weeks.