The C Word – A New Battle Day 11 - Turning a corner

1/30/17  noticed this was still in draft form....This morning, at 6:00AM, George woke me up to use the urinal.  I’m not sure how many times I got up to do this in the middle of the night.  I have learned to do this with as minimal effort as possible so I don’t fully wake up and can go right back to sleep.  At this moment, George said, if you’re up to it, you can take me to the bathroom and I can do more, and you can give me a sponge bath to clean me up a bit.  I am sure my eyes probably rolled a little bit as I thought, “It’s only 6AM!”  I did speak up and say, if you can wait a little while, I’d rather not do that right now because then I will fully wake up – and I’m not ready to do that.  How about one more sleep?”  I chuckled to myself and said, “You know when the kids are little and looking forward to something you tell them, “just 4 more sleeps(nights)” but in my case I just need a little more sleep and then I’ll be ready.” 

About an hour later we were “up and at ‘em”.  Got George into the bathroom and while he sat on the toilet I did a light sponge bath, washed his face, let him brush his teeth.  Then we put on a clean gown and actually took a stroll around the “short block” (half way down the hall is a passage between the two side of the floor, so we went through the passage and back towards the room).  George then sat up in his chair for a bit as well. 

Once back in bed he asked to get an Ativan because he was so tired.  He was complaining of having hallucinations and waking up startled.  Not sure the cause of that – whether drug induced or chemically (anemic) induced.  It took about two hours for him to stop jerking and twitching and he fell into a deep sleep.  Slept pretty good for nearly six hours (aside from two potty breaks but he doesn’t have to get out of bed for those cuz Nurse Dawn is to the rescue)!  He has hardly touched his PCA (personal pain management) today.  He says “well, when I don’t move it doesn’t hurt so I don’t push it”.  I told him that all week he has been laying in bed and I would see him reach over and push the PCA button – so in that regard the only thing that has changed is your need to push the button!  So that was a good thing as well.

We heard from his nurse late in the morning that the on-call surgeon had stopped in upstairs and told them the changes that would take place today – but he did not have time to visit George because he got called back to surgery.  It was nearly 5PM by the time he stopped by the room.  Here are the changes that were made today (1) Cap off the G-Tube (YIPPEE, NO MORE GREEN GOO LEAKS!), (2) food by mouth! George could pick his starting point and opted for the full liquid to start reintroducing foods to the belly, (3) vitals every 8 hours instead of 4 during the night to allow for sleep.  [He thinks the hallucinations were due to lack of sleep and believes that George keeps slipping right into REM sleep and wakes up in REM sleep so he is skipping the other sleep cycles – thus, need to allow for more uninterrupted sleep.), (4) bandage removed from over the sutures to allow them to air dry, (4) cut back on IV fluids (to reduce the amount of times he has to pee - - he has been urinating up to 6 times PER SHIFT with 1300-1500cc’s  output during the shift.   (5) Ativan at night to sleep more soundly, at least for a day or two.

George started slow – some sips of ice water, ¼ cup of milk and small container of sherbet.  He now has his Ativan and is fast asleep.  I will follow suit shortly myself so I can do some catching up as well.  He said tonight that he actually felt better like he was starting to get his energy back. 

I was surprised that the diet was ramped up so quickly and was prepared for the tube feeding to start back up.  Hoping the TPN can stop or reduce soon because that I think is the biggest source for the urine output (it is like a gallon of fluid pumped in over a 24 hour period).

So it finally feels like we have turned a corner and I pray, really pray, that there are not setbacks.  If we can continue on this course then we might be able to go home mid to late week.  Dr. Bastidas will be back on duty tomorrow to reassess and since there has been positive progress over the weekend may actually start to consider speculation for what the rest of the week will look like.

Time for beddy bye.  I can feel my eyes closing and am not even going to try to keep them open much longer.  Good night one and all – the Haskins are out for the count - - -for as much as is possible given current conditions. 

The C Word – A New Battle Day 10 - Self-Perception

I alluded to the fact in an earlier blog that I attribute much of who I am to my mother.  A major factor also must be the fact that I HAVE FAITH.  From a young age I was taught that our God is a loving God, an “omnipresent” (all present) God, an “omniscient” (all knowing) God.  God is Love was over the door to one side of the sanctuary.  I have never doubted that.  It is second nature for me to believe, to have faith, to trust that ALL THINGS WILL WORK OUT FOR THOSE WHO BELIEVE.  It is just who I am.  Nothing more and nothing less.

When tragedies strike or horrible circumstances present themselves to me, I am human and initially I have a very human response - - anger, frustration, sadness, confusion.  Generally speaking those periods are very brief.  And then I pick myself up by the bootstraps, brush off the dust, and figure out what do to fix the problem.  Some refer to me as being optimistic, even overly optimistic.  I don’t worry about the future, not in a bleak, “will I have enough” or “what’s going to happen” sort of way.

In college, one of my roommates quoted this saying (pardon, I don’t know the origin of it),

“I am the place where God shines through,
For He and I are one, not two.
He wants me where, and as I am,
I need not fret, nor fear, nor plan.
If I will be relaxed and free
He'll carry out his work through me.”

Easier said than done.  I do have my fair share (or sometimes seemingly unfair) things to fret and fear about.  Sometimes more than I admit to myself. But if we can find moments to “let go and let God”, that’s when we free ourselves from the bondages of self-talk (self-pity, self-hate, self-anything) and we are more able to enjoy life no matter what the challenges are.

But this God of mine, of ours, intends for us to grow in those darkest of moments.  He EXPECTS us to do that.  And so I do – I grow.  Often in ways I never expected, dreamed or even wanted to grow.  I find myself saying, “What exactly am I supposed to do with this information now, God?”  It may seem silly to many people, but eventually the tide will turn and we may figure out the “why’s” of things.  I also know that He may not give us an answer during our lifetime. 

I don’t walk around preaching my beliefs to others. I have my strengths, and that is not one of them. I lead by example as it is easier to show someone than it is to tell someone certain things. 

Now, back to perception.  I tell you I am JUST ME.  I don’t feel that I am anyone special.  Quite the opposite.  I live a fairly ordinary life.  I’ve raised a family that is not perfect.  I am not perfect.  I look at other women and there are traits they have that I still would like to have.  Not in the envious sort of way – well, not most of the time anyway.  There have been times I wished I could “x,y,z” but due to other constraints in my life these things are not achievable and, quite frankly, may never be.  But I can still hope!

When people start singing praises for all that I have done or continue to do, I am quite humbled.  For, you see, I consider myself as someone who just takes life’s ups and downs in stride.  For the most part I am very flexible –changing my course or direction at a moment’s notice as life doesn’t seem to have a straight and narrow course.  I sometimes find it hard to accept those praises when I feel that I am not doing anything extraordinary.  I am only doing what I am supposed to be doing because it is the good and right thing to do.  I am just “me”.  There are so many others out there that deserve high regard. 

And so, as you follow me on this journey, you see my ups and my downs.  You see my sadness followed by my digging into my faith and coming out the other side.  It’s a constant path of uncharted territory with more roadblocks and sand traps to come as we move along. 

Don’t look on me with pity.  Don’t be sad for me.  Do as Jesus does – just come along beside me for whatever bits of time you have (either in person, in prayer, in a virtual world).  Talk to me about what is going on outside of these four walls, for sometimes talking about these four walls can be repetitious or monotonous (yes, even when the you-know-what-hits the fan - -because it keeps on happening).  Let’s talk about other things – tell funny stories – make a joke or two.  When you talk to me about things “outside” my little room, I get to take a breath of fresh air and remember that no matter what is happening inside of this room, life is still being lived, the earth is still spinning, the sun is still shining (or for some the rain is still falling).  Sometimes I will need you to get behind me and push me or get in front of me and pull me – but mostly I just need you beside me.  By doing that – and by the Grace of God – no matter what happens on this journey I know that ALL WILL WORK OUT.  God has the last word – His will, not mine. 

Thank you for being part of my world, however vicariously – I know many people I do not personally know are following progress.  Nothing very new to report for today.  George had another plasma infusion last night.  Today has been relatively quiet.  He has been more alert  - for short bits of time anyway.   That is progress.  Forward movement.  Am grateful for that right now.

The C Word – A New Battle Day 9 - Spoken too soon

Have you ever experienced times in your life when you “spoke too soon”.  You may have already arrived at a conclusion and were moving forward with the current progression of things – only to have everything come crashing down after the fact.

I think we have all had these.  I certainly have had my share. 

Perhaps the most significant one that I can recall was back in early 2000.  In the year leading up to that moment, my life seemed to be headed in a good direction.  Mike and I celebrated 20 years of marriage.  Sara was enrolled in a really good school down in Irvine.  Becke was doing pretty well in high school.  We had just opened our home not only to a foster daughter, Rachel, but also to Tabitha, her newborn baby that she had delivered in November 1999.  Mike and I were attending a foster parenting class together.  Most significant to me was that Mike had become so comfortable going to church that he had even started going to a bible study on his own without me having to go with him.  I remember thinking how well that was all going.  I also remember driving around one day, I don’t remember if I was alone in the car or if someone was with me and we were having a conversation.  But I remember saying or thinking, “I am so glad I am not single – because I wouldn’t have the slightest idea of how to go about dating since the world has changed so much in the past few decades.”

And then….. my world came crashing down around me just months later. 

That’s probably an over-the-top example of how we go through life in a sort of blissful naivety, never ever thinking anything bad will happen to us.

Most of the times the types of occurrences I am thinking about are a lot less significant than that, but it gives you an idea of what I am speaking about.

We’ve had a few of those “hiccups” in the past 10 days.  First was the surgery which, for all intents and purposes, was going to be exactly like the previous one.  Go in, cut out the bad stuff, do the HIPEC, clean up, go home and heal.  Only it didn’t happen that way.  We spoke too soon.

On Tuesday, George had been just upgraded to real food.  He was feeling pretty good, all thing considered.  This is good.  We are on track to go home at the end of the week.  And then, BAM, a leak happens and we are now not only forced to take a step back, but go back even farther than the day after surgery.  No feeding tube, no food or ice chips by mouth, nothing.  Only nutrients by IV.  We spoke too soon.  That night was aflutter with activity, CT scans, bags of fluid and antibiotics, other stuff as well. 

All day Wednesday and into the night more fluids including plasma and whole blood were sent syphoning through his veins.  Both Wednesday and Thursday were spent with George sleeping most of the day.  Dropping in and out of consciousness, even in the middle of conversations.  We were concerned about his lethargic manner but a visit from the doctor assured us he was actually doing better than two days prior. As the day went on, the number of tubes was lessened.  His central line was removed as the lines were moved over to the PICC line in his left arm.  We were prepared for a relaxing night, just as the night before was.

At 3:15AM George woke me and said he thought something was leaking.  I thought he meant his wound so I went over to check the bandage.  What I saw was a lot of green goo and I thought to myself, this is not what was coming out before!  George then asked me to check the G-drain.  I did – and found that the drain tube was not attached to the valve.  Therefore, for hours his stomach bile had been dripping onto the lower end of his wound covering, dripping down the creases in his legs and all his private areas.  Gross is an understatement.  Fortunately between sheets and towels in place, a lot of fluid had been captured and soaked in by those things.  We rang for a nurse and I proceeded to start doing an initial clean up.  The nurse came in, took off the old wound covering, sterilized the area and positioned clean covering on it.  Then George got up to use the toilet and I helped get the rest of him cleaned up as best I could. By the time we got to bed it was about 45 minutes later.  I was still wide awake so took the few pictures I had taken and sent them off with a scathing letter to the nurse leader that we met earlier in the week.  I questioned how a nurse could have not gotten the seal tight on the tube to prevent this from happening.  I wrote about a few other things, then turned the computer off and went back to sleep.  Thinking we were going to have a relatively quiet night – we spoke to soon once again. 

Today another CT scan has been done because the doctor thinks there is still fluid building up due to the white cell count being on the rise.  Should they see a relatively good size pocket, he will be wheeled down to surgery for a quick procedure to put in a drain.  I am not clear if that will be sometime today or will wait until tomorrow.  I think if a drain were in place George would not fear moving around and getting out of bed.  He fears that standing, sitting or moving around will make the fluids flow out again.  Other than that, it has been a relatively quiet day thus far.

The quiet nights appear to alternate so perhaps tonight will be our lucky one!  Do I dare speak the words?!?!?!?  Or even THINK such a thing?!?!?  After all, we are in a hospital – and the one thing we have learned is that “anything goes”!   

The C Word – A New Battle Day 8 - When Good News Is Not Especially Good News

Today was a rather slow day for the most part.  George spent the day sleeping – a lot.  He would nod off in the middle of short conversations.  Overnight they continued with the plasma and blood transfusions as well as a bunch of other things and I had hoped that this would, at the very least, make him a little more alert.  Instead I witnessed more of the same behavior.  Very sleepy.  Nodded off in the middle of conversations.  No energy.  I texted the doctor about this and said I was concerned and then asked “Should I be?”  He did not respond so later in the morning I sent another text letting him know that I would be away from the room from 12-2:30 and that I would like to have a conversation with him.

At noon, Keith came over to sit with George so I could run out and take a shower, feed the birds, water the plants, pay a couple of bills, do a quick load of laundry and yes, even just sit in a comfy chair for a short while.  Just after I finished my shower, Dr. B texted and said he was with George and I could call right then or he would touch base with me later, so I picked up the phone and called.  He put me on speaker so George could participate in the conversation.  He basically said that he noticed improvement over 36 hours ago, that George’s pulse was stronger at some of the pulse points and that his color looked okay.  He said that George can get up and move around at his own comfort level and I said, “then he probably won’t get up much at all”.  Doctor left one of the abdominal bands for George to wear when he is moving to help alleviate the fear that something will happen to the stitches.  Our night nurse, Akash, came in and said we are going to put the belt on and try for a short walk.  He is very encouraging!

I think he thought I was going to ask about a release date today but I was trying to find out when we would be trying to reintroduce foods again.  George has been on just TPN for 2 days with nothing by mouth or feeding tube.  He will be ordering another CT scan tomorrow to see where things are progressing.  He reiterated that while the scan the other day did not show a leakage he is convinced there is one.  He said that the area is draining still, but draining slowly.  The radiologist did not see a big enough pocket of fluid to warrant having a drain put in. 

We also got the pathology report back today.  And while it was not entirely new news to us as the surgeon has said that he believes it to still be “low grade”, what has changed is the aggressiveness of it.  So “low grade” no longer means “slow growing”.  That part of the pathology seems to have changed.  We do not really know what this all means in the way of treatment.  We do know that “low grade” tumors are not responsive, for the most part, to chemotherapy regiments.  I am trying to reach out to our fellow PMP community to find out some more information while we wait for George to heal and then start speaking with his oncologist. 

So when I say Good News is not really Good News – here’s what I mean.  Low Grade appendiceal cancers are not very treatable via anything other than HIPEC.  When HIPEC is no longer an option as in our case, some try to go the route of regular systemic chemo and maybe immunotherapy, but most of that has not proven to really work at slowing, let alone stopping the growth.  Had it been a higher grade type of cancer, those DO tend to respond to other treatments. 

Today the tubes were removed from his central line and placed in the PICC line on his left arm.  That should be more comfortable for him as the one on his neck kept pulling when he moved.  Less fluids are being pushed today which is good. 

We got a pretty good night’s sleep last night.  I used ½ an Ativan and slept SOOO good.  I woke up a few times and attended to George but went right back to sleep.  Thus I felt so much better today.  Hopefully we will both get a good night’s sleep as it looks like there will be only TPN going tonight and maybe antibiotics, but not much else. 

Tonight I have thanks for some of the wonderful nurses we have had:  Hardeep, Akash, and Amy to name a few, have all been really wonderful. Sometimes I don’t know who the graveyard shift is because the board where they write their names is behind my pull out bed so they are not able to write it. We’ve had some nice CNA’s as well – those people do a lot of the work and get none of the glory – emptying and measuring bodily fluids from all sorts of drains, cleaning up trash, and so on. Many of their names are hard to spell so I won’t list them – but I do appreciate them.   

The C Word – A New Battle Day 7 - Memories

Preface:  I did an interim blog this morning about what was going to be happening today at the hospital - - so am taking a welcome break from reporting icky stuff and do something different. I will tomorrow if anything significant happens today or during the day tomorrow. I think today is all about George sleeping while they push fluids, platelets and plasma into him. 

After a rough couple of days, today I want share some memories and relationship thoughts.  This came to me after Facebook popped up a memory from the day George proposed – 14 years ago today. 

George and I had been dating for over two years and I’d been pushing him to “do something”.  We had booked a 4 day cruise from LA to Catalina Island and Ensenada.  Originally we had planned on all four daughters to go with us but, as it turned out, his two had work obligations and couldn’t get the time to go with us.  Unbeknownst to me he had enlisted the help of Sara and Becke to “find the right place” on the ship.  His requirement was mainly a quiet place where not too many people were around.  Also unbeknownst to me, our table mates on the ship had all been informed that he was going to propose.  This meant that at night when we sat down to eat they would check to see if there was a ring on my finger.  Having seen none, they would not say anything. 

This particular night we were somewhere in the waters between Catalina Island and Ensenada, Mexico.  After dinner we all took a walk, the girls taking the lead.  We wandered up to what during the day was the topless sun deck - - but by night was really off limits.  But - - it was a quiet, secluded place.  The girls witnessed as George proposed.  I don’t remember that I didn’t say yes, or that my responses did not show that it was a yes – but George says he kept waiting for a response and tears was not what he was expecting!  I guess he finally clued me in that I had not responded.  Immediately afterward the girls went running off - - to the ships computers to send out messages to everyone!  And here we are, nearing our 14^th anniversary (16 years since we met). 

My girls:  What can I say?  I have the most amazing kids.  Sara, Steph, Becke (in order of age).  Two biological, one “inherited”.  Though we’ve all encountered some rough patches as mother and daughter, as the years go on our bonds have become stronger.  They look to me as a role model for the way they lead their lives.  I guess if I have any sort of legacy, the kind of women they have become and are becoming is about as good as it gets. 

As we’ve been walking this cancer journey together, they have taken on the role as cheerleader for me.  I am touched by all the things they think and say about me.  Humbled.  For me, I am not doing anything out of the ordinary.  I am “just me”. 

My “love buttons”, Addison and Isabella:  Whoever said there was no bigger joy than becoming a mom has not experienced being a grandmother. My heart burst with joy.  I was fortunate to be able to spend the first month with them as I helped Becke with their care.  Since they were babies I have been able to schedule “YaYa and Poppy” time at our home at least a week or two every year.  They have boundless energy and are full of love.  We have created an incredible bond as grandparents to these cute little girls.  I think the fun memories are of them sitting with Poppy as he tells them made up stories and when they spend time doing “Face Time” on the weekends.  I hope those are favorite memories of theirs (as well as “chiggerbites” time with him.

 

My role model was my mom who always had room in her home and her heart for just about anyone who walked in the door.  Our home was one that always was filled with not only biological family but “adopted in love” as well.  I don’t recall that I was ever jealous that there were other “kids” in the family – because her heart was big enough to include everyone.  She made family gatherings look easy.  She never minded if an extra plate had to be set at the table.  Although for my childhood and youth she was a stay-at-home mom, she kept busy with volunteer work such as being a Girl Scout leader.  Later she managed to go out into the workforce and do other things that she loved to do.  As they aged I started calling Mom and Dad on a weekly basis just to give my mom time to talk about her week.  After he died, my siblings and I rotated days and made sure someone checked on her every day.  I used to get up on Saturday mornings at 7AM and take a walk while I talked to her.  I miss those conversations.  I miss the “connectedness” we had where we just talked about whatever we wanted.  We did not have to agree with one another but could listen and share how things were going.  Once a year I would fly home and spend a week with her (and Dad when he was alive).  We had an easy going relationship and could talk about so many things.  Plain and simple, I miss Mom.  I’m so glad I got an opportunity go get a 4 generation photo of her in 2009.

While I love all of my siblings, I have a special place in my heart for my sister.  While our age difference is 7 years, a lifetime apart when we were young – this gap was long ago bridged.  (A funny thing occurred to me just now…. Our age difference is the same as the spouses of two of our children!!)  Over the years she has come to California to spend time with us and we have been able to be guests at her house on occasion as well.  Her children are closest in age to  mine and thus our children are also comfortable around each other.  Her daughter and my Becke looked so much alike when they were younger we used to refer to them as “the twins” (little did we know Becke would get her own twins later!).  Since Mom has died, Beth and I have become even closer as we rely on each other to share our intimate feelings and work through some of the difficulties life has thrown our way.  The saying, “Sisters by birth, Friends by choice” is so very true. 

Aside from these that I speak of above, I have other relationships that have meant a great deal to me.  Of course, my late husband Mike was a huge influence on me.  My brothers, aunts, uncles and cousins were and continue to be important.  I have a circle of loving, caring friends who have done so much for me over the years.  My “angels on earth”, spiritual, caring people.  I’ve had co-workers that I’ve formed a bond with.  A few high school friends and my college roommates.  Some of these relationships are ones that have been nurtured over the years.  Many go without contact for months or years but whenever the opportunity comes to re-connect, the time apart melts away completely as we shift into our easy, fun-loving relationships that began so many years ago. 

All of these relationships are important to me in varying ways.  I know I can count on extra prayers, special notes, a quick text that will come when I need it the most.  I have a feeling that over the next few years I will come to rely on them more than I already do.  While I may not always say it, I hope you ALL know that I appreciate you being in my life. 

People come into your life for a reason, a season or a lifetime.

When you figure out which one it is,

you will know what to do for each person.

When someone is in your life for a REASON,

it is usually to meet a need you have expressed.

They have come to assist you through a difficulty;

to provide you with guidance and support;

to aid you physically, emotionally or spiritually.

They may seem like a godsend, and they are.

They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,

this person will say or do something to bring the relationship to an end.

Sometimes they die. Sometimes they walk away.

Sometimes they act up and force you to take a stand.

What we must realize is that our need has been met, our desire fulfilled; their work is done.

The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,

because your turn has come to share, grow or learn.

They bring you an experience of peace or make you laugh.

They may teach you something you have never done.

They usually give you an unbelievable amount of joy.

Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;

things you must build upon in order to have a solid emotional foundation.

Your job is to accept the lesson, love the person,

and put what you have learned to use in all other relationships and areas of your life.

It is said that love is blind but friendship is clairvoyant.

— Unknown

The C Word – A New Battle Day 6.5 - Setbacks

This disease has so many opportunities for unexpected setbacks.  After major surgeries the risk is higher for sure.  Like the last time, we experienced another setback last night. 

Because of all the fluid loss going on, the night was pretty busy with infusions of potassium (not sure, at least 2) and antibiotics (again, at least 2) as well as a fast IV fluid push.  The gauze that was across his belly was changed a couple of times were so saturated that they would fall off if he stood because they were so heavy.

The doctor came in this morning.  He said that the CT scan did not show any leakages but he is pretty sure that is what is happening.  It would be a fistula (an area where they stitched together pieces his colon).  He says that typically these heal on their own. 

CT scan showed a small pocket of fluid in right cavity.  Also showed some air which tells him there is a leak. 

He is recommending the following “protocol”. 

First, labs showed low numbers so he did a cross match blood sample today in order to get a plasma infusion to bring those numbers up.  Also some Vitamin K to help with clotting.  Up to this point he has been receiving injections to prevent clotting, but prothrombin time (time it takes for blood to clot) is very high so they have to bring that down.  He will re-start TPN for nutrition as his nutrition levels were very low – but he has the gastric tube in place which will keep his belly drained and keep his bowels free from irritation and other drainage. 

He plans on keeping just dressings on the sutures today so that they can keep an eye on drainage.  He will talk to radiologist to see if they observed enough fluid to warrant putting in a drain which would certainly be easier to deal with than a bandage that covers the entire right side of his abdomen.

Basically, the first order of business I to get him stabilized and get his nutrition and body chemistry in better shape.  If a drain is needed, I think that is a small surgery to place it and his levels are too low to handle that. 

Later today or tomorrow morning he is planning on another scan or x-ray to see how things are going. 

While this will most certainly push out our discharge date, we want to be assured that he is in better shape in order to get the most benefit in being home.  I am finding that I am not as flustered about having discharge date moved as I was the last time.  I am not as frustrated. 

I am just feeling so bad for George.  He has just been so miserable the last few months and there is nothing I can do to help him.  This latest turn was so discouraging and scary for both of us.  I sat by his bed in the middle of the night and just wept.  Right now it looks like this journey is taking a heavy toll on him.  I pray that things turn around soon. 

My children have been so wonderfully supportive.  Sending messages and loving notes back and forth. Their support means the world to me.  I know this is hard on them, too.  I am sure it means the world to George too but he is not able to express that right now because it is taking all of his energy just to survive these days.

The C Word – A New Battle Day 6 - Line Dancing Moves

Today feels like a line dance of the cancer variety.  Two steps forward, shuffle to the right, one step back, one step forward, one step back and repeat. 

We got some really good zzzz’s last night.  The diahrrea finally started subsiding after 9:30PM.  Only two sleep interruptions some 3-4 hours apart and then straight back to bed for more sleep.  We both slept in – even me, which is unusual.  Normally by 5 or 6AM I have had enough.  Good to go for the day.  Not so today.  I stayed with my head under the pillows until Dr. Bastidas showed up at 6:30 this morning. 

We reported about our night and how George was reacting to medications, etc.  He took out the one drain left (JP) and covered the hole in gauze.  Checked out the suture lines and replaced the one bandage at the lower end that we had a nurse put there yesterday because it was a little red and we didn’t want it rubbing against clothing.  He gave the thumbs up for regular diet – any food goes.  (Of course, still being careful - - and George is not yet very hungry).  He talked about starting to switch over some of the medications and tube feedings but had not wanted to do that until George’s GI system was working better.  All good things.

We asked if he could give us a ballpark about our discharge date and he said perhaps by the weekend (of course, barring any unexpected hurdles).

First thing on George’s menu – Rice Krispies with sugar and milk.  He ate just a small bit which is fine – and drank all the milk – and that all appeared to settle okay. PT came in shortly after that and they took a walk halfway down the hall and back. Then, back to bed where he promptly fell asleep.

Our oncologist, Dr. Sheh popped in for what he said was a social visit. He has not yet been here – and pathology reports are not in yet, so he just wanted to see how George was doing.  We chatted a little bit about what he expects to see.  He said he doesn’t expect any surprises about a change in pathology from the last time to this time.  That being “low grade” tumors.  We know that low grade tumors have less choices available for treatment than higher grade (I am not sure why exactly this is).  He said he would start researching trials and studies to see what may be out there.  He also indicated that he would likely send tissue out for DNA testing because there is one “variety” of cancer (if it is genetically based) that responds to a specific treatment.  At any rate, a DNA test will show better what types of cells we are dealing with and will hone in on best treatment for that.  I told him that we were part of a couple of groups and saw discussions on some chemo treatments.  He asked if they were working.  I told him that a couple of them seemed to be going okay.  In most cases it added a couple of years on.  He thought that was good.  (That’s NOT what I thought.  I don’t like that at all!)

I napped for a short bit today myself this morning and then, because my mind kept spinning to the conversation with Dr. Sheh and I found myself weeping… actually on and off all day.  Trying to be strong for George – yet feeling like a cloud is hanging over my shoulder today.  Fortunately he has been sleeping all day today so I can pull myself together for the moments he is awake.  (He will read this later  - and it won’t be fun for him to read – but he knows that the “elephant is back in the room” anyway.) 

I tried to keep myself busy today but having a hard time concentrating and am still rather tired. 

This afternoon a laid down for a nap again.  After a bit George needed to go to the restroom again.  We went in there and as he got up to head back to the room I saw all this fluid on the floor.  At first I thought maybe he was still peeing but didn’t know it, but when I lifted his gown there was fluid spewing from the suture area.  It looked like a water faucet. I tried to pull the emergency rope in the bathroom to summon help but am not sure it is working.  Mind you, we had called for a nurse 20 minutes earlier because his IV line was beeping that it was done yet no nurse had yet responded to that either.  Finally I grabbed some paper towels and asked George to hold it against his belly while I rang them again.  I grabbed the call button on the bed and rang again and when nobody responded right away I ran to the hallway to try to get help.  One of the nursing assistants was walking by and I said, please come, I need help!  We finally managed to get the Charge nurse to come to the room and grab some towels and help him to the bed to lay down.  I directed George where to step so he wouldn’t step in the puddles of fluid near his feet.  (How I managed to do that I will never know – pure luck!)  The nurse held compression on the wound while we worked to clean up a little bit.  The nursing assistant tried to put a clean gown on George and we said, “forget the gown for now!”. I mean, really, let’s get our priorities straight here!  Jashley, the charge nurse, told our nurse that, for now we’ll just cover with gauze and tape up.  She instructed her to take his vitals and call Dr. Bastidas.  She did that and came in to let us know that he instructed them to find a rep or someone certified in the hospital to put on a clean vacuum bandage (like he had before that was taken off yesterday.  In the meantime, George is scared S***less about having to get up to use the restroom tonight for fear of it flowing like that again.  Especially since he has to use his abdominal area in order to get out of bed!

Currently George fell back to sleep on his bed, covered in blankets, as we await whatever the next step might be.  I am so grateful that the bathroom trips are not very frequent – otherwise this would be much more critical. 

5:15pm – the factory rep just arrived and will coach the nurse how to put the new vacuum therapy bandage on.  (She is not allowed to touch the patient.)  First they need to clean up what’s there as it is still oozing a whole lot.  This process could take up to an hour.

5:45pm – after seeing how much was oozing out of the belly, another call was made to Dr. Bastidas (who, we found out, is out of town for the night).  They are not going to put the vacuum bandage over the wound yet.  He has ordered NPO (nothing by mouth) for now (poor George, he was only just looking forward to a little bit of food, even if it was a glass of milk) – and now he can’t even have ice chips!!  They are going to put the gastric drain back in place and have turned off the tube feeding. For now, we are going to just keep changing out the bandages on his belly - - which are soaking up the wound stuff like a sponge so that will have to be done frequently.  They are ordering a lab tech to come and take a sample of the fluid.  She said something about finding out if a surgeon is on duty to come take a look – possibly put some sort of drain in, but not sure of that.  Dr. Bastidas will be back in town in the morning as well.  This situation is still rather fluid (in more ways than one as you see) so whatever I am being told now could very well change in 30 minutes. 

6:30pm – Nurse came in and took sample to send to lab.  Is putting in the gastric drain (which is a gravity drain that drains the stomach).  Then she will cover the wound.  I can see the one she just put on after she took the sample a short while ago and it is already saturated.  A CT scan has been ordered up so at 7 he is to get a bit of oral contrast, again at 8 and the scan will be done at 9. 

8:30pm – The nurse brought in the barium for George to drink and it was the same size as what he’s had for scans in the past…. Only thing is he has not had more than a ½ cup of fluid at any given time since he feels nauseas.  So nurse checked to see if it could be put through his J-tube feeder.  By the time she did that the 7 o’clock hour had passed.  Was closer to 8PM - - so everything is pushed back an hour from that.

In the meantime, a good buddy of his stopped in so they visited for a bit. 

So no updated news right now to give you and probably won’t have any news until morning about what is going on.   It’s going to be a long night of getting the nurses to change the dressing regularly. 

I will try to post a mid-day update tomorrow for those following this.  Prayers!!  Thank you!

The C Word – A New Battle Day 5 - Milestone reached

For those in the PMP world, one of the most talked about topics is bowel movements.  Too little or too much is the bane of existence.  Trying to keep controlled is a fine line, balancing the needs of the human body as much as possible in order to lead as normal a life as is possible.

For many, the loss of parts of their intestinal tracts, usually means that they either must use dietary means to keep things under control or medications or a combination of the two.  On the flip side, due to the surgeries they have endured, they can be more prone to small bowel obstructions (SBO’s) which can required trips to the emergency room to help alleviate the problem and sometimes I see from postings by others with SBO that additional surgery can be required to rectify the situation. 

We knew there were going to be a couple of significant milestones after this surgery.  Priority one is managing pain adequately.  I think that’s pretty much complete.  Second is working on mobility.  Although George is weak, he is able to do short distances with the ultimate goal being able to get in and out of the house and to and from the bathroom.  I think he can do that, not easily yet, but he can.  Major milestone is release of gas and/or bodily fluids.  That was not only met at 2:30AM – but is now flowing very freely, almost too freely.  Not as bad (yet) as our worst two days ever the last time – but 9 times in 12 hours.  Is it too early to discuss an Immodium regime to slow it down a little bit??

However, in between those times he is doing one of two things:  Sleeping (and, from where I sit it looks like a pretty good slumber) or sitting up in his chair.  Well, 3 things – in and out of the bathroom because…. He can!  Today the tubes that made it cumbersome to move away from the bed were removed!  Woo hoo!  The only thing he is tethered to is his IV pole.  (The oxygen/heart rate machine is something I can disconnect whenever he needs to move away from the bed.)  He’s not feeling very well today – but he is trying to do the things he can.  And, my lesson learned from the last time is that I am not pushing things on him.  I ask him, but if the answer is no, I accept that and let him be the director as much as possible. 

Today the doctor removed the suction tape over the sutures so those are now exposed.  Ow, that hurt!  Tomorrow the JP drain will come out.  Day by day.  Diet is now changed from clear liquids to full liquid – so instead of chicken broth he can have pureed chicken noodles soup! LOL!  Oh, and pudding and ice cream and milk.  Those are his go to things, I think.  Probably will do this for a day or two and then bump it up a notch.

Next time we see the doctor we will ask if there is a time frame for going home. I’m not sure what final milestones will be.  They may want to see how he tolerates solid foods.  Maybe not.  Maybe soft easy foods can be done at home and a regiment that slowly adds things can be done.  Just not sure so that will be a question we may get answered tomorrow when we ask for an estimated or definitive timeline.  

I should probably see about meeting with a case worker as well to help determine what he will need when going home so we can order up the necessary items.  I think we have to arrange for a home health nurse to stop in periodically to check on things since we are going home with a feeding tube in place. 

I forgot to mention that yesterday the nurses on this surgical floor had first year nurses from a local school to mentor them.  Each nurse had one or two students assigned to them.  The girls were able to do some of the procedures with the help of their instructor and/or teaching supervisor.  The one with our nurse came in to do her first glucose stick so the instructor had to be with her.  As she looked around our room she noticed all the different machines we had and asked if she could bring all of them in at some point during the day to explain it all to them.  She was respectful and knew George was resting.  I asked them to come by after lunch as by then I thought George might be a little better after having meds adjusted and fluids pumped.  Before she brought them in I gave them some background about what has happened with George in the past two years and let them know why he was hooked up to so much equipment.  I then got to listen to the instructor as she told the girls about each item:  The3 IV pumps/monitor and why they were set up that way, the pain management device, the tube feeding and TPN (nourishment by IV), the Gastric (G) Drain and Foley, the suture “vacuum”, etc.  So, I benefitted from that little bit as well.  Not lost to me was the fact that my husband had a host of medical equipment all in one room that is atypical of most procedures those girls will see in their workplace.  Not that they won’t see them, just not very often. 

Had just two visitors today, Stan (former co-worker of George’s) and Kim (neighbor).  Visitors are more for me than George.  He doesn’t last too long and doesn’t participate in conversations too much.  He did try to for a bit, but even talking exhausts him.  If it weren’t for a few visitors sprinkled into the mix, it is very quiet for me as George does not “do” television in the hospital, not even for background noise.  I usually walk around most of the day with my earbuds in listening to music while I crochet, browse facebook or do some office work. 

Summary:  A productive day.  Hopefully a relatively peaceful night.  I imagine I will be woken up a few times for bathroom runs, but with luck there will be at least 2 hour gaps between them. 

No pathology report given to us just yet.  Patiently waiting for that.  

The C Word – A New Battle Day 4 - A Frustrated Patient

Last night and today was not only a challenge for me but for George.  He knows what he is putting me through and that frustrates him.  Not being able to find a comfortable position to sit or lay down frustrates him.  Not being able to eat even very minute swigs of water or ice without getting nauseous frustrates him. So, today was a frustrating day all around.

After the horrendous night last night and just not finding peace for more than short periods of time, we sent a note to the doctor.  He, in turn, ordered up some extra IV fluids and some additional anti-nausea medications.  The first was administered this morning (Reglan) and did not produce much effect to start with.  Then, via IV, he got a healthy dose of the Zofran.  Also got the instructions that he should not take much liquid orally until things settle down.

It is 7PM and while the nausea is not entirely controlled (and I should add that this entire time it is dry heaves because there is not real food going into the belly), the bouts last just 20 or 30 seconds and then he is done.  And, it is longer in between these spells. 

Since this afternoon at about 2:30 he has been doing a lot of really good sleeping.  I even had the chance for an hour nap today as it was pretty quiet on the floor and we did not have many visitors dropping by.  This evening our friends, Keith and Bonnie, came by to spot me so I could go home to shower (yeah!), water the plants, and feed my piggly wiggly hummingbirds.  A welcome break – and it was nice to warm up (90 outside – 65 in George’s room!) 

I am hoping that we will start to “turn the corner” and get the nausea under control.  If we can do that we can lose at least one more “hook up” and get George’s own body to start learning to do what it needs to do.  The sooner he can get that going, the sooner he can go home.  Still not sure how long it will be before we can be discharged…. No one does.  It all depends on George’s recovery and even he is not in control of that.

Time to sign off as there is little to report today other than reiterating the same thing over and over again.  Wanting to turn in early myself and try to catch up on sleep while George does the same.  Hoping for a better day each morning. 

Tomorrow or the next day we will be getting pathology reports to enable us to determine what our choices going forward will be.  Trying to remain positive.  It can be difficult when we believe we have very few, if any choices for treatments.  Trying to believe that we will find something that will work for George. 

For now – sweet dreams for us.  Tomorrow will take care of itself.

The C Word – A New Battle Day 3.5 - Horrible Night

Long, long night.  It actually started while I was preparing my blog journal for the day.  Constant up and down for adjustments, etc.  This process went on just about all night long. 

Hot or cold meant blanket up or down.  Back hurt, head up, head down, pillow underneath back  - no take it out.  Ice chips. Barf bucket. Call the nurse.  Make adjustments.  Sit in bed – sit in chair – no back to bed.  Constant, constant demands to try to make him comfortable.

At midnite I finally told him he needed to call and use just the nursing staff as I was exhausted and my meds were kicking in and making me loopy.  I had to lie down for a short bit. 

Got in a snooze for about 1 ½ hours after the gave George some anti-nausea meds AND a sleep aid.  I believe he slept for about an hour.  Then, the nausea woke him up and therefore I was also up. 

I got a little snippy.  Seemed like every time I climbed back into bed I had to get up again.  If I just sat and waited for something to happen, it didn’t.  At one point I actually sat in the chair next to his bed with a pillow resting against the bed. I think it was 2:30 - he fell asleep for about an hour to hour and a half.  He will say he did not sleep because he threw up and then the nurse came in.  I told him I was sleeping right next to him and that could not possibly have happened.  He argued with me!?  Really?

Up at 4:30 and back in a chair.  Dry heaves.  Cold.  Just not feeling well.  Might as well do the morning weigh in.  Down 3 pounds so he is losing some of the extra fluids though his hands are still swollen.

6AM – Back to bed.  He appears to be sleeping at least for now.  I think I will try as well.

Horrible horrible night after a fairly decent day.  

The C Word – A New Battle Day 3 - Baby step progress

Slept pretty good last night - - at least I did.  I turned lights out early (for this place) in order to try to get some good zz’s.  George woke up at 4AM to go to the bathroom so I called the nurse/CNA in for assistance and right away said, “While we’ve got him up, let’s get him weighed so we don’t have to worry about that later.”  “Good idea!”, she said!!  He has lost only a pound.  He is in the range of where he was before this whole obstruction occurred – but is about 18 pounds up from where he was on Wednesday morning. 

Went back to sleep and made it until 7 when he had to go again… I guess that’s progress because it is more than yesterday.  So it is good that he is expelling some extra fluids. 

It think it was around 8:30 when we got him up to sit in a chair by his bed.  Shortly after that, PT Nina came in and they were able to walk half way down the long hallway and back.  She was pleased with that.  He sat up for a short while longer and then crashed for a few hours.  Since he seemed particularly grumpy this morning, I was glad he was getting some sleep. 

One of the discussions with the morning nurse this morning was the fact that he needs to walk but because he gets dizzy he has difficulty even attempting to do so.  She told us that while it could be the dilaudid, it might also be because some of his blood counts were low today. We thought Dr. B was on call today and we could ask him when he came in, but it was another doctor on call today.  She said if we wanted to contact Dr. B that we could do so, but as a nurse on staff, she could not since he was not the on-call doctor.  So I text messaged Dr. B and told him the circumstance and gave him the low counts, etc.  He responded with a couple of questions and I sent him pictures and answers.  He said he would order up a few things to see if they would help.  One thing was extra IV fluids.  Also some X-rays. 

This afternoon they came to get him for X-rays.  Let me tell you, that was a huge feat!  His TPN line is very short and cannot be too far from the bed or it will yank out, as well as his central lines.  So he had a tight grip on those so they wouldn’t pull out during the ride.  Trying to get “Chromium Chrissy” and the bed out the door was very difficult.  Then we tried an elevator that was too narrow and had to back out of it and try another one wide enough for the bed and the pole.  Then, we got down to the X-ray room and had to maneuver into it.  They had to use two different machines and techniques to get the pictures they needed! 

Shortly coming back upstairs, PT Nina arrived and George actually was feeling pretty good and made a trip ALL the way to the other end of the hallway and back and sat in a chair for a short while afterward.  That is progress.  I think the extra fluids are helping!  Hurrah!  He actually looks and feels better and hasn’t been continually pushing the dilaudid button. 

For the first time in a long time, George feels hunger.  Unfortunately, he is restricted to 750ml of fluids a day (broth, jello, popsicle, tea, juice) for now. They bring up about ½ cup of broth for a “meal”.  But the fact he feels hunger is something to behold!!  He drank his broth and settled in for a nap until Dr. Bastidas arrives to see how things are going.

This evening George tried to watch a little TV (first time all week) but nothing really on.  So I offered to pull out his iPad so he could entertain himself.  He tried to do so from sitting in the bed with the tray in front of him but soon decided to sit in his chair for a bit.  So he’s been sitting up for a while. 

Dr. Bastidas came in to let us know how the tests looked and to see how George was doing.  Was glad to see him sitting up.  Xray showed that there are gas bubbles making their way down the intestinal tract so he is encouraged and feels that it won’t be too long before the milestone of passing gas is behind us.  It’s a good sign.  Once that happens they will cap off the GI tube which is draining the stomach and see how things go.  If all goes well, then he will be off the liquid diet and can order anything off the menu.  Not sure a cheeseburger will be the first thing he orders.

Since George had been up and catching up on his iPad he read my blogs for the past few days.  He asked Dr. B about the surgery and so forth because he realized he did not fully comprehend what we had told him yesterday.  I knew that it had not yet registered, so now that he is slowly coming around he is having to come to terms with the scope of things.

He asked Dr. B about what we all have been thinking, “if this is still considered low grade then how to it spread so quickly?”  Dr. B said that’s why he did a frozen sample for testing.  However, we need to wait for the full report.  I mentioned that we had not yet heard from the oncologist and he said that we won’t until after pathology comes out. 

So, today had it’s ups and its down, but certainly forward progress has been made.  It has taken me a while to write this final bit (I worked on it off and on during the day) because, just like last time, often as I just sit down and get situated George needs something, i.e. adjust the head of the bed up or down, cover him, uncover him, give him CPAP and turn it on or off, get a sip of water, etc., etc., etc.  Up and down, I get a lot of exercise!!  He keeps me hopping that is for sure!! 

We had only one visitor today, Bonnie.  Nice time catching up with her.  She and Keith will be back tomorrow to spot me so I can go home, take a shower, check my mail, etc.  I don’t want to be in competition with George for who can go the longest without taking a shower!  Haha!!

Side note:  I forgot to mention something very touching that occurred on Wednesday afternoon.  After I met with Dr. Bastidas post surgery and went to deliver the news to those waiting with me, I was visibly upset.  A man in the waiting room, dressed in biker-like clothes (sorry to classify – but most know what I mean), came over to us and asked if he could pray with and for us.  He knelt in front of me and took my hands and Victoria and Cathy also put their hands out.  He proceeded to ask for healing for whomever we were upset about.  He spent a few minutes in prayer.  We thanked him and he went back and took his seat.  What a phenomenal gesture from a complete stranger.  I asked his name but cannot remember it now.  But this is an example of what we should be doing for others - - Note to self:  Don’t be afraid to ask to pray for and with others?!?! 

The C Word – A New Battle Day 2 - Frustrated patient

The past 24 hours have been a tad bit frustrating.  As noted in yesterday’s journal, I received a call from George about an hour after I had gotten home because we were told that a bed would not be available on the regular surgical recovery floor – or the chances were pretty slim.  Apparently when Dr. Bastidas got back to the hospital to check on George he noted that he was still in ICU and he went about to get him moved.  He arrived at George’s bedside just about 9PM.  George was surprised as he had just fallen asleep.  George then called me and I told him I would meet him at his new room since he told me they were “packing him up” as he spoke. When I arrived, he was not yet there -  and did not make it down for about an hour after my arrival. 

Since he arrived at the magical hour of shift change, he had to endure two sets of vital checking, one with the shift going off and one with the shift coming on.  Then his new nurse arrive about 11:30 and proceeded to do some updates with his equipment that apparently are not things available in ICU.  One of the things that has to take place regularly is flushing out George’s TPN (feeding tube) line.  In ICU they used a syringe to do this periodically.  Here, they add another water bag to the line and program the unit to flush the lines every four hour so there is no need for someone to come in and do it.  Hmmm, why is one floor able to have the equipment and not another?? 

At midnight she completed all the things she needed to do and told us that things should be quiet until vital needed to be done at about 3:30AM.  She left the room – and not 5 minutes later one of George’s IV lines starts beeping loudly.  Nurse Valena was nearby and heard it and came in quickly to take care of the “air in the line” coding.  She left the room –and 5 minutes later something else started beeping – the compression line for George’s calves.  She came in and took care of that.  Five minutes later – and the TPN line started up again so we called her in again.  She left and five minutes later the compression line started to beep again.  Seriously?!?!?!  What the heck is this all about!  That was the last of the beeping for the night so we were grateful she figured it all out.

George woke me up at 5AM to use the urinal and we called the nurse in for help (it is a major feat to accomplish getting out of bed with all the tubes, etc.)  Since he was up she fetched the scale so he could be weighed because she knew the doctor would be looking for that number in the system.  A few more things and, 40 minutes later we attempted to get just a little more sleep. 

The next shift came on and things went relatively smoothly.  Since George knew that we needed to PT sessions today, just before ten he asked if I could find the therapist and have her come in.  I told him that the nurse would be in shortly to do an additional TPN flush and we could find out.  At that time, George decided he wanted to try sitting up for a bit so the nurse and CNA came in to help get him situated.  Nina, the PT, arrived about 11 and got him to take two walks to the door and back.  George complains about the “room spinning” and we think that is the dilaudid.  We need to ask Dr. B if there is something else that will adequately administer a pain medication without the spinning because we need George to be able to get up and walk around more but he can’t if the spinning keeps on happening.  Too unsteady for that!

This afternoon was very frustrating as George’s pain medication line ran out and the unit started beeping like crazy.  It beeped for a while but apparently the nurse could not hear it.  I silenced the unit and we gave a call to the nurse’s station.  It took probably 10 minutes for the nurse to come in and take care of it (and me silencing the unit every 2 minutes).  When she finally arrived she changed out the meds and went to add another potassium bag.  This took her a bit of time to set up and, during the set up the unit kept beeping and beeping.  George finally glared at her and said “can you shut that thing up!”  So then she kept on top of silencing it whenever it started to beep while she kept on trying to get the line going.  She left the room after getting it going and the stupid thing started beeping for air in the line.  She came back in and tried to fix it and thought she had but a few minutes later it started again.  Needless to say, the patient was very, very angry!!

This evening I left the room to make a phone call and was gone a while, but forgot to put the call button low enough for George to get it.  (he was sleeping and I did not want to disturb him).  Apparently, shortly after I left one of the lines started beeping because it was complete.  No one could hear the unit beeping, George couldn’t yell loud… and so he listened to it beeping until I returned 45 minutes later.  By this time he was absolutely livid!  Not a good day for man and machine!! 

The PT came in right after all of the afternoon stuff but George was so exhausted form the beeping and stuff that he did not feel up to doing anything!  So she gave him a pass and will be back in the morning. 

We had lots of visitors today – Sara, Keith, Stan, Rob and Angie, Denise and Rosemary.  George did pretty well.  He sometimes dozed off, or listened with his eyes closed, but he managed to hold conversations.  By the end of the day he was pretty tired. We are hoping that things stay relatively quiet so we can catch up on our sleep.  Right now the only line going is the TPN – and I think that one will need to be changed out sometime during this night shift. 

Dr. Bastidas was in this morning and says things are going okay.  No other news for the day on the medical side of things. 

George and I are making peace with his current condition.  Taking a “Let’s wait and see what we are dealing with – and then deal with it” approach. 

Time for some sleep - - hopefully will get a good 5 or 6 hours in with minimal interruptions for me (maybe I will sleep through the shift change tonight?  One can hope!) 

The C Word – A New Battle Day

First, we are so thankful for all the prayers.  I think it not only helped us get through the day, but get through it with grace and peace. 

This morning I had a 6:30 appointment to meet the surgeon to tell George the news.  George was way too groggy last night to comprehend anything that would have been told to him. 

When I arrived at 5:30AM the nurse told me that he just cat-napped most of the night.  He was sort of awake when I arrived.  When Dr. Bastidas arrived he filled him in on what had taken place yesterday.

I have a correction to make from my notes yesterday.  The cancer was all over the small bowel.  He did not say today that it affected any other organs and said that the upper abdominal area looked okay.  The portion of small bowel that they left in had cancer tumors on it but they could not remove or scrape it.  Instead of leaving George with no small bowel which would be very bad, they left him with some but it has growth on it. 

George took the news fairly well, a little teary eyed.  But, as soon as Dr. B left, George said, “I just want to sleep now.”  And off to la la land he went.  A few hours later he made a comment or two but still not saying much about what was told to him.  It wasn’t until later in the day that he started asking questions about what the situation was.  I told him.  And a little later he asked me to tell him again.  (His memory retention is affected by the anesthesia.) 

Over the course of the day, especially the early part of the day, there was not a lot of talking going on.  The PT came in at 11:00 to get him to start moving his legs and then got him out of bed and standing.  That did not last long because the room was “spinning”.  He got up a second time just before 3PM because the nurse wanted to try to have him go pee as he had not done so since his cathether was removed very early this morning.  And, this evening, they not only helped him out of bed for a bathroom break but also had him sit in a chair for a short bit.  Very good progress! 

Food wise he did not eat (rather, drink) much but he did at least try.  He will be on liquids and very soft things for a bit as they intestinal track heals.  He is getting food via his feeding tube as well as minerals, etc that he was low on. 

Today Stephanie drove down for a visit.  It did her good to see her dad.  At first she was very cautious, but as time went on I think she sensed that things will settle down and we will figure out what the next step is.  She left around 4PM and I got a text from her about 8PM that she had arrived home…. 4 hours for a normally 1 ½ hour drive!!  Poor thing.

Steve and Robin, friends of ours, popped in for a visit this evening as did my co-worker Judy.  George was in good spirits and making conversation, even smiling some.  Definitely progress over this morning.

He is still in ICU even though transfer orders were done at 7AM.  There are not beds available on the next floor down.  Since he has a bed and a room, he is lower priority than others having surgery. Perhaps Friday will be a slower day and he can be moved tomorrow!!  He rather enjoys ICU because it is quieter for the most part (there have only been 6-8 patients on the floor, there are at least 20 rooms!)  But it will be easier for others to move about and come visit if he is moved, plus I will be able to stay the night.  (As I type this I just got a call from George that he is being transferred to a room tonight!!  So I will be packing up and heading back to the hospital! Hoo-rah!)

I left about 8PM as he was quite tired.  Will turn in soon.

Today I am thankful for all the prayer warriors out there, for all those that are texting and emailing.  I have touched base with the PMP sites we take part in and am getting some ideas about what kinds of questions to ask and hearing what others are doing or have done that had similar situations to George.  I am thankful for the nurses who were so very kind.  I am thankful for Dr. Bastidas and all the support he has given us. 

When George was sleeping today I had chance to listen to my “tunes” and crochet and relax.  I can feel your prayers as a sense of calm has come over me.  I feel relaxed and at peace.  I know that we can tackle whatever needs to be done.  I am sure it will have difficult moments but we will take those as they come.  It is probably easier said than done – but, for now, the only thing we are concentrating on is getting George up and about as well as get some good nutrition in him so he can come home to finish recovering.  Tomorrow will be a new day and we will take that as it comes. 

I need to stop typing so I can pack up and head back to the hospital and “move in”.  Until tomorrow