Moving Forward with Cancer

I apologize for being long overdue in writing a post about Dad.  Life got a little crazy for me and it was hard to have a minute to sit down and write a post-- (side note:  having four kids is a lot of work).

SO--- a lot has been going on recently.  About a month or so ago, Dad went in for his scan results which he received at the end of his chemo round.  This is the same round of chemo that he was getting over Christmas and through the New Year-- I think most of you knew that he was on chemo because they found a few spots.

The results of the scans were kind of good news/bad news.  Good news first (because frankly, who wants to get to the bad stuff right away?)... the chemotherapy was effective on the spots that were there and which started him going on the chemo.  This was great news.  So, the bad news is that the cancer popped up somewhere else and not in one of the best of areas.  Therefore, he stopped his latest chemo and has been started on a new treatment plan.

 TREATMENT:  So, because cancer SUCKS, and doesn't like to stay away apparently, the same drugs don't work the same for everyone and they also don't work the same for each type of cancer or each area the cancer spread.   This really is the frustrating part of CANCER.  It's just so subjective and such a wide range.  Dad has started on a trial that involves several stages -- though I am not sure of all the details on this entire process, we are excited that this particular chemo drug works with Dad's own immune system.  It uses his own immune system to help fight the cancer cells instead of poisoning him (basically).  Since the typical Esophageal Cancer patient is usually older, in not as good physical health and has poor eating/drinking habits, this could be really great for Dad's treatment.  So, there are lots of possibilities here.

Where we are at:  With most cancers, when it comes back it will probably continue to come back.  It's crappy, but people often live with cancer for many, many years and it's more about maintenance, prevention and controlling what is left in one's body.  That's where we are at.   With the new treatment plan, we hope there is success in keeping it all at bay.  

I want everyone to know that right this minute, Dad is FINE!!  He is still not on any sort of drug that is going to make him grow hair or lose hair (hehehe).  He goes to work everyday and continues, loves and excels in his church calling as well as being a pretty amazing Dad and Papa.  It's surreal to think that he even has cancer, because he is just his same old self.  On occasion he gets a bit tired, but I am willing to bet I am more tired than he is these days... just sayin'.  I asked him a few weeks back if he thought that maybe the doctors were lying to him and perhaps it is some kind of conspiracy theory and he doesn't have cancer at all.. because he doesn't seem to have cancer to me.  Of course, he gave me that look of, "Erin, you seem like an intelligent person, but you say the stupidest stuff".  Whatever.  Point is, HE IS DOING GOOD.  We will just continue to do whatever we can do and try not to worry about the things that are out of our control.  His doctors' always say, "Mr. M, you are are unremarkable" (which is hilarious) "you are in excellent health, except for the cancer".

Our family is so blessed and we are incredibly grateful to all who think of us and pray for us.  Thank you.

Quick Update!

Super news!  A couple of weeks ago, Dad had all of the scans done (typical at this point through chemo) and they came back showing that the chemo is working wonders!  50% reduction at this point!  The doctor raved that this is the best we could have expected!  This is incredibly exciting! 

Another go around!

Writing this blog is tricky business.  I want to be informative but I also want to respect the fact that sometimes writing out the gory details doesn't exactly respect my dad's privacy nor does it really help matters.  That being said, here is what I've got to report:

A couple of weeks ago, my dad went to MD Anderson for his checkup.  This is the checkup he has every few months where they do endoscopies, cat scans, pet scans, etc.  After the endoscopy, they said things looked great and his esophagus looked very clean.  That's great news.  However, when the tests came back from the other scans, it showed some spots popping up in a couple places.  Of course, last time there was a spot on his lung and they just zapped that sucker and that particular spot disappeared.   This time they have chosen to go with chemo to hopefully attack any cancer that is in his body.

The chemo now comes in pill form (no more fanny pack.... too bad, I really thought they'd make a comeback!).  He takes 5 chemo pills a day.... Mom says they're like horse pills!  In addition to the pills, he goes in every other Monday for "the juice" which is administered through the port on his arm.  This round of chemo will take 6 months.

To be honest, I have no idea what all this means.  It seems to me, now that we have a bit of experience in all this cancer stuff, that cancer really sucks!  Once it shows its ugly self, it usually will continue to pop up and you have to deal with each little appearance on its own.  So, I think that is where we are at.  We aren't FREAKING out or anything... we are just dealing with another little appearance which should be taken care of with this round of chemo. 

Dad is looking and feeling good.  He is a bit more tired but is his normal self.  I think that is one of the must frustrating things... you expect if he is actually sick that it would be obvious, but it just isn't.  This is a good thing in that the better he takes care of himself and the healthier he is, the better able he is to recover quickly and fight off anything that comes in his way. A month or so ago Dad went to scout camp in west Texas and was hiking and running around like a teenager, so I think you can probably get an idea of how he really is in good shape!

So, this is where we are at.  Dad is doing great so far!  He will have some scans in the next while to make sure the chemo is doing its thing, but besides that life goes on as normal plus five pills.

Chemo is OVER!

It has come to my attention... thanks to my aunts... that while most have enjoyed the added pictures to the blog, some of you might actually be wondering how DAD is doing.  Well, he is doing great!!  Chemo is over, port is out and he is finally free of the fanny--both pack and booty.  There really wasn't much to say about it.  It's kind of been the 'same old, same old' with getting chemo, feeling lowsy and feeling really tired.  

Yesterday the doctors took the pack back for the last time--I was saddened that he didn't get to keep it but apparently it is specially designed for a certain pump and wouldn't be good for much else.  They also took out the central line.  This was causing Dad some discomfort as it went up his arm, he could feel it right by his throat (which made eating even more uncomfortable) and down his chest.  There is something about having a foreign object in you that your body just doesn't like.  The port area was especially uncomfortable because he had broken out in some sort of a rash due to the adhesive or adhesive ointment that they used.  

Dad has certainly lost some weight since this whole thing began and before he started chemo he was feeling like his pounds lost were pretty ideal.  However, with chemo and feeling nauseous and not keeping too much food down, he did lose more.  He's mostly frustrated by his muscle loss.  Sooo....

So here is the plan.  After a couple more days of radiation Dad plans to hit the gym.  Hopefully this works out.  Like all of us, we all plan to hit the gym and pay the ridiculous gym prices to attain bodies like greek gods, but it sadly never comes to fruition.  But, he should be able to gain back some muscle tone.   This will help his body be stronger for surgery which is scheduled for May 13th.

Dad also hopes to gain back some L-Bs (pounds) by being able to eat more.  As of yesterday and today, he has been able to eat quite a bit more already and that is still with some left over chemo working its way through his system and radiation still going on.  So, this is looking very promising.

Also, the parents are each planning a mini trip here and there.  I'm glad that they will be able to get away for a little time.  I'm on dog duty--as always-- so I am going nowhere... just so you know.

As I mentioned before, surgery is schedule for mid May.  When they went over their appointments at MD Anderson, they looked the months over and have absolutely ZERO appointments in April!!  That is so awesome.  Perhaps a little normalcy.  That will be oh so nice.  This will also include a slow in blogging unless I decide to post how proud I am that I am beating my dad at racquetball... it doesn't happen often so I may have to take advantage of this post chemo/radiation while I can.  Yes, I am totally one of those people that will relish in my win even though I am beating some 52-year-old with cancer. 

I am anxious to see how Dad will feel after radiation.  When that finishes up, I will have to post about how he is feeling.  Since he has done the chemo and radiation together it's been hard to distinguish what side effects are from which treatment.  We are almost done with this part of treatment!!

Last Week of Chemo

When we first started this thing  and decided on treatment, we were slightly disappointed because Dad didn't get into the new course of treatment for the study he is in that we had hoped he would.  (The new course of treatment would have meant 6 weeks chemo, 6 weeks off, 6 weeks chemo/rad, 6 weeks off and then surgery.  The traditional method, which is what he ended up taking is the same except for that first 6 weeks of chemo alone.)  Like I said we were a little disappointed because they'd said that the odds were slightly better with this new treatment.  However, NOW we (especially Dad!) couldn't be happier that we went ahead with the traditional course!

 

Here is dad receiving his last in-hospital dose of chemo this past Monday (the day he also receives the happy drugs I mentioned before).   I don't know if this picture was set up or not... I mean, maybe he actually does read while he is there, but all I know is that I get a text every Monday from my parents saying "Don't call, we are taking our chemo nap now and don't want you calling us".  I see how it is.

Chemotherapy is a tough thing to go through.  It wears you down.  You are basically pumping poison through your body in hopes that it will kill the cancer.  It makes you tired and sick.  This coupled along with Dad's particular type of cancer where he has troubles keeping food down certainly has left him eager to finish up with this chemo stuff, pronto!  He's had some good days and some not so fun ones as well, this was all expected, but he certainly doesn't think he would have handled a second course of chemo as gracefully as he did this one!

Turns out, the nurse recently mentioned, that the results from the newer treatment course weren't showing much of a difference.  I tell ya, sometimes you don't understand why things turn out one way, but eventually you come to realize that it was for the best after all.  Thinking that maybe the big guy upstairs might know what he's doing.

One of the parts of chemo that was pretty inconvenient was carrying around the chemo pack... aka the fanny pack.  He has to wear it all the time... sleeping, in the shower... it is annoying.  My mom has to wrap it up while he showers and then he has to hang it on the bedside when he sleeps.  Not to mention the discomfort of the port that he has in his arm.  He's had an allergic reaction to the tape or gel they used and so I think the area is kind of sensitive. 

I gotta say, not every man could rock the fanny like this.  Lookin' good pops.  Lookin good.  I think he might even be bringing it back, in fact, in some places around the world the fanny is quite popular.  You know, like the airport and the 80's.

Countdown to the end of chemo!!! 5 days left

Since this is the last week of chemo- hoo rah!- I've decided to post pictures of my dad from the past in celebration.  Radiation lasts for an extra few days after chemo, but chemo is gross stuff.  It has made Dad feel like crap so I am happy to celebrate the end of this part of treatment with photos...

An oldie but a goody!  I'd say we are looking at a picture circa 1959.  My dad is the youngest boy in the picture along with his older brothers and their dad. I've picked this picture to share for several reasons: 

• 1- It not only will prove to embarrass my dad but my uncles as well, so it has triple effectiveness.  
• 2- Before 2 years ago, I literally had never seen a picture of my dad under the age of 16.  I don't understand why this is, but up until this point I never believed my dad was a child.  To me, he was born my dad.  Now I have proof that he existed and grew up like the rest of us.
• 3- It's in black and white folks.  He's THAT old.
• 4- Also, look at that swimming pool!?!  For real, there is no way those three boys and their dad fit into that pool sitting down.  It makes me think about the size of that pool, the quality of it but more so about those swimmers.  No, not just the swimmers, but those swimsuits!!  (I'm chuckling about those suits right this second)
• 5-Because it has my grandpa in it.  I never knew my grandpa Mc very well as he died when I was 8, but I get to hear stories about him a lot.  When I think of the person I am, I think that I am very much who I am because of my parents, which in turns makes me think that my dad is probably a good portion of who he is because of my grandpa. 

It must be those "happy drugs"....

Every Monday at chemo, MDA gives dad "happy drugs".  Well, at least that is what we are calling them.  Really, it's some sort of anti-nausea drug that they give him through his port, but it makes him feel pretty good.  Last night as we were practicing for our church lip sync competition (which we are going to rock), Dad seemed to have boundless energy!  In fact we were all getting pretty tired during our card game later in the evening but Dad was still rarin' to go.  I gotta say... he was kinda like this...

Yeah, I got a hold of all the family pictures...I'm actually the backup in case my parents computer crashes again (it's happened 2 or 3 times now already) so they can still have all their pictures.   Of course, this makes them mine too.  Funny thing is even though I'm moved out with a family and a home of my own, I still feel like I have claim to all of my mom and dad's things.  I think that's part of being a kid... and a mooch like me. Anyway, I've been feeling like this blog needs a few more pictures... this one will do.  Bill (Dad) circa 1976.

Red Jello and Happy News!!!

Today was a big day for dad at MD Anderson just as every Monday is.  It's the day he gets hooked back up to chemo, gets his first zap of radiation for the week and he visits with his doctors. 

Here is dad receiving his chemo treatment and eating up some yummy red jello.  My dad has been loving red jello lately since he heard a story about it and also since he has used in a church talk.  Because I feel it my obligation to make fun of my dad whenever possible, I have been doing my best to carry on and on about red jello.  It's catching on I think.  So, here's a picture that mom snapped for me and sent on her blackberry...

Pretty much all doctors are notorious for making patients wait.  MD Anderson is no different.  Sure, they work like a well-oiled machine, but still it seems to take forever.  This is especially true as I expect my parents to be at my beckon call.  So, this is usually how I feel as I am waiting to hear what is going on with my parents...

...I'm an impatient gal as you can see...at times I can be described as a bit of an annoyer or one who enjoys pestering.  Pretty accurate I'd say.  Today was no different.  I was really worrying about today.  I think we all have been.  It was getting frustrating that dad wasn't able to keep food down and it was looking more and more like a feeding tube was inevitable.  But, much to our delight, the news from the doctors was AWESOME!

Dad got a PET scan done last week.  He is part of a study which has him doing more pet scans than are normally administered to patients.. This is excellent because it lets us see his progress more frequently.  Anyway, my dad gave me some specific information that he said I had to put down word for word... apparently he isn't the biggest fan of my creative speech as I am.  So here goes...

After two weeks and 9 of 28 radiation treatments and 9 of 25 chemotherapy treatments the head oncologist said, "The results are dramatic! Especially after nine treatments."  The nurse said, "Best report you could expect this early in the treatment. They're excellent!"    The tumor size is down 20% and the effected lymph node activity is down 25%.  There is no other indication of activity elsewhere including lymph nodes, liver, spleen, lungs and bones.

Translation for those of us that don't speak percentile---They've blasted that sucker so well that it is getting ever closer to destruction.  Since Dad is an over-achiever, he is ahead of the game and has already been brown-nosing the head oncologist and schmoozed himself into the likings of the nurses.   They must like him enough to deliver such a wonderful report card!  His grade thus far?  A+! 

So, fist bumps all around... it's a good day!!  This was best case scenario for us after just two weeks of chemotherapy and radiation so we are feeling pretty good at this point.

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.

Juiced and Zapped

Chemotherapy and Radiation started today!!  Woo ha!  I think the whole family is just happy to make a little progress on this stupid cancer thing.  For something so serious as cancer, it really seems like things move VERY slowly.  Anywho, I was my normal, annoying self calling and texting my parents all day seeing how everything was going.  Mom dutifully reported... all of dad's bathroom trips, nose blowing, shoe tying and all other mundane happenings.  I thought it would be so cool to be there for the start of the chemo/rad but I had to stay home to let Toby (my parents' dog) out to pee.  Why am I always stuck on dog duty!? 

Here is an excerpt from the email my dad sent to me...I think you can see where his spirit is at these days...

Well, I am sure it is too early to make this brash claim, but this ain't no thing!

I have asked for a tour of the proton accelerator device that facilitates the proton beam. I invited Maureen to go too but she is not as excited about it as I am. I am really excited to see it. I guess its still that old engineer hidden away inside. Oh, I hope they don't blast that part out too!

Well its 5:15 and I have been juiced and zapped! I am pretty sure I made some cancer history today ...at least a few cells are history (dead)!

Dad gets to wear a fanny pack!! I know, I am laughing about it myself right this minute... it is black, not like the purple or hot pink that I was envisioning, but nonetheless, I think we can still refer to it as his 'man purse'.  Or at least I will.  It is the pack that holds the chemo drugs or whatever other drugs they want to pump him full of.  You probably wouldn't even notice it if you saw him with it (unless you were staring and wondering why he is accessorizing with a man purse...).  A little tube goes up into his central line and doses him.

I haven't seen Dad with his fanny yet, but I did get quite the show yesterday as I watched Mom flush out Dad's central line.  It was such a weird sight that we all were laughing so hard at how it looked like mom was really giving dad some really 'good stuff' through his central line!  It was just such an odd site seeing my mom with a syringe that she was putting in Dad's arm.  Pictures were involved for posterity, but probably not for this blog :).

Open up the port valve!

Yesterday, Dad went to good ol' MD Anderson to have a central line put in.  It will act as a chemotherapy port which will allow the chemo drugs to be administered and will also allow the nurses to get as much blood as they need through it instead of having to poke him a million times... those blood suckers.  Apparently when you have cancer they want to take all of your blood from you--maybe they are still bleeding people to help cure them :).  Actually, there is just a lot of testing involved and cell counts they need to keep track of and it also helps them to see what's working and what's not. 

Technically this is  minor surgery, but Dad said the actual 'implantation' took about ten minutes.  He had to lay down and a nurse shaved his upper arm area where they put the line in.  ---For some reason, I thought it was hysterical that a male nurse shaved him, but I think Dad thought I was being dumb because it was just a little area and it was a professional doing it...but still funny, right?   I even asked if he used a regular razor or an electric.  Electric.--- Anyways, a local anesthetic was used and they put this tube in his arm and it goes through to his chest.  This will allow the medicine to be delivered both quickly and efficiently.

The portacath is located on his upper right arm.  He said it is only a little sore and it shouldn't really bother him after a day or so.  Dad said it was basically just an IV--- So, now I am going to consider any time I get an IV to be minor surgery.

My parents both have to attend a class to learn how to take care of the port (or central line or portacath or whatever...it has a million names).  If they don't learn then my dad would have to go in just for them to flush it out every day.  So, they have to take this class... TWICE.  They took one yesterday and are taking one today.  My mom texted me just a few minutes ago complaining about how stupid some people are as they ask the same questions over and over, but perhaps it is just their first class and perhaps not all people can be as smart as my momma. :)  BTW, my mom passed the course with flying colors!!!

I saw my dad last night while I was at the church and I really want to see what it looks like-- I think my dad is sensing he might need to set me up with some boundaries--- but there were too many people around and that might have been strange to do that at the church!  I have an uncle who had open heart surgery a couple years back and I thought it was so cool when he showed me his scars.  I must have some sort of strange interest in seeing people's scars/markings, etc or something.  Anyway, CHEMO/RAD STARTS TUESDAY!

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.

Chemotherapy and Radiation

Apparently, there are hundreds of chemotherapy medications out there each designed to handle different cancers, different cells, different areas. The chemotherapy that he will use to help kill all those cancer sleeper cells will apparently not have many side effects. Each body reacts differently to medication, but we hope that this will be true for Dad.

Dad won't lose his hair (he was real concerned about that), won't lose his eye brows (I was admittedly sorry he wouldn't lose those bad boys), will still be able to go to work and fulfill his church callings and shouldn't be affected too much at all. He will probably be more easily fatigued and may feel nauseous at times, but should be able to live his life regularly besides. He will still be able to go to the gym and be active.

Dad will likely be carrying around a small back pack... or "fanny pack" as I like to think of it (kinda hoping they'll give him a hot pink one) which will administer him the chemo drugs. I am not sure about all the details about that, I am sure when he starts I will be able to update that more with further information.

Radiation will happen with chemo -with the second round of chemo if he gets the study's new treatment plan- which will shoot the tumor to shrink it down. Radiation is a little tricky with esophageal cancer because of it's location so close to the heart. Hopefully he will be able to fatten himself up before the big surgery once the radiation shrinks the tumor down. I'm willing to join him in the fattening up process to show my support... that's what family does, you know.