The “C” Word – Day 144 and Day 145 Where has the time gone

Today, December 30^th, marks 90 days since surgery for George.  I have to say that the first 60 days post-op were probably the hardest.  Between not having appetite or no “taste buds” and not being able to breathe to developing abscesses and having no energy there have indeed been moments that we thought things would never get better.

In the past week or two there have been notable changes for the better in George’s recovery.  He is now able to walk a bit further, stay awake notably longer, drive and get out of the house some.  Where six weeks ago he could maybe only walk to the corner of the street and back he is now able to walk all the way around the block (1/2 mile) and then some.  He has walked around stores or parts of our local mall.  In the beginning this little bit of effort resulted in a two-hour nap.  Now, he can do them and though tired he is not napping as often. 

Over Christmas weekend he was able to enjoy time with his grandchildren, even able to gingerly chase them around a little bit or give them “chigger bites” (loving tickles) which they thoroughly enjoy.  They enjoyed trying to dodge his attempts at chasing them down. 

For a few nights this week he has even managed to stay in bed all night without having to resort to his recliner.  (This also enabled me to sleep better as I was not woken up when he left the room!)  Today we enjoyed a movie out – and although it was difficult for him to be comfortable in the theatre seat he did manage to hang in there for the duration of the movie. 

Although he is using the restroom less, there are still some problems going on internally.  We haven’t found the “magic” potion that will take care of that.  The surgeon said it will take a long time for his small intestine to figure out how to do the job of the large one.  It could be a full year before things are settled with his new body.

Tomorrow (Day 145 and New Years Eve Day) we will take time to have fun with some friends of ours.  Every year we have an early dinner with a special couple and then watch a movie.  We used to go out to a movie but last year we had to be home to take care of Mom – and this year, although we thought we would have to do that again, Mom is not home.  However, due to other health issues we will watch a movie in the comfort of a home.  We are almost always home by 10PM where we might stay awake long enough to watch the ball drop at midnight – but we do not fret if we fall asleep by 11!

We will ruminate over what has transpired over the past year – and pray that 2015 brings better health not only to us but to those around us.  While we pray that we never have to endure another surgery for the PMP, the reality is that there is the possibility of having to repeat this process somewhere down the road. 

My personal prayer is that we are able to push any fear for the future out of the way and make the most of each and every day that God gives us.  We still have trips to make and grandkids to watch grow up.  For the most part it looks like George’s health will improve and he can resume some of the projects that he has planned for around the house as well as having some fun out in “man land” where he can make some great things out of wood.  We seem to have been given a chance to “live life to the fullest” – and I hope we are able to take advantage of that. 

This year has been an incredible wakeup call about the fragile balance of human life.  We went from utter despair to cautious hopefulness and now appear to be on the cusp of things looking brighter than we had expected.  We sing praises for this.  We are grateful to those who have surrounded us with love, support and prayers – sometimes in the most unexpected times and places and from people we have never met. 

Hopefully we are listening for what God has planned for us.  We know that He is capable of doing much.  We have some ideas for what we want to have happen in 2015 and hope that they all play out the way we would like them to – but we also know that God has his own schedule and sometimes it is not exactly the same as ours.  We will make no resolutions that are different from what we already do as I believe we already try to “do better” no matter what time of year it is. 

So here’s to a better year in 2015.  Happy New Year – to George – and to me!  Praise God we still have each other!!

The “C” Word – Day 137 Merry Christmas

A few months back when we first got the news about George’s cancer we were not sure if George would be around for Christmas.  The prognosis was so very grim. 

Yet, here we are with Christmas just two days away.  George is alive… not yet kicking, but alive.  His stamina is still quite low so he requires naps after expending small amounts of energy to go shopping or trimming a tree.  But he smiles more, he appreciates people more – and he is aware that just being alive for Christmas is a miracle. 

Because we wanted to focus less on the “material” there are few gifts under the tree this year – and the ones there are mostly for the littlest ones in the family.  Christmas is all about the children.  And Christmas is all about family.  We will have all the “girls” here for a short while on Christmas as we come together to celebrate.  The house will be noisy and rambunctious as the kids run around. 

This will be the first Christmas of many more to come.  More than we would have expected just a mere few months ago.  There are sure to be more changes along the way as that is the way of life.  But there is hope for our future.  God willing there will be many more “tomorrows” for George, for us, for our family. 

So we wish a Merry Christmas to all those following our progress.  We know how lucky we are to have so much support from friends, family and even strangers around the globe.  No matter where you are we hope you are able to celebrate the holidays with someone you love.  And don’t forget to take a moment to remember the Saviour who came to earth so long ago that we all might be saved by grace and have hope for tomorrow because of our faith. 

Merry Christmas – from George & Dawn

The “C” Word – Day 127 Surgery follow up

Yesterday we had another follow up with the surgeon.  From the reaction, we gather that they feel George is doing stupendously.  We feel things are moving slowly – but they are more than pleased at the progress he is making.

We discussed nutrition and diet some to see what can be done to assist in getting George’s organs to function more closely to normal.  The doctor said this part is experimental and will depend on George to monitor things.  Take something out and see if it makes a difference.  Try this, try that.

Our first mini-step will be taking milk and cheese out of the diet for a couple of days.  If that works, then we maintain that for a while.  If it doesn’t, plan B will be to try some Metamucil and/or Immodium to see if that helps.   One of those three things should be of help. 

The doctor is still suggesting that George try some sort of high-protein thing once a day as well as add in some additional electrolytes (i.e. Gatorade, coconut water).  He also said he should be taking a multi-vitamin.  These are all things I have offered to him and suggested to him but he still is giving some push-back on.  Coming from the doctor (again), perhaps he is starting to listen??

The one thing that concerns George is that the largest of the abscesses is apparently not all the way gone.  He is wondering if there is something he can do to help that but he forgot to ask the doctor.  Not sure that there is anything except allowing the body time to absorb the fluid.  The doctor did not seem concerned. 

The good thing we found out is that even though the oncologist indicated that he thought the first CT scan would be in January (the 3 month mark), Dr. Bastidas said that due to the slow growth nature of this cancer that he will do it between the 4 and 6 month post-surgery period.  This would be our baseline CT scan for future “watch”.  He does not want to do it yet because there has been so much done internally to George plus the additional abscesses that to do it sooner would have to many other obstructions in the way to get a good baseline scan.  After the first year he will do one annually.

Our next appointment will be at the end of February! Whoopee!  The appointments between the oncologist and surgeon are starting to be stretched out a bit.  That sure is a nice feeling.  It has also now been about a month since George’s release from the hospital (the 2^nd time around) – and we have not had any major incidences - - so we are grateful for that.

After the appointment and after some lunch, George went on a short shopping trip.  His skinniest of skinny jeans were not small enough so I had purchased an inexpensive pair of the next size down.  He wanted to get a pair of trousers to wear to church on Christmas Eve and also a belt that fit.

This weekend I hope to get some serious baking done so I have some goodies to give people!  I got a few things done last weekend.  This is an attempt at “normalcy”!  Last weekend Steph helped me put the outside lights up.  George said that there are a couple of areas where they are drooping a little bit.  My comment, “At least they are up!”  He agreed. 

On a side note: For the past few weeks we have had to deal with George’s mom having viral pneumonia.  This has meant additional care for her as she could not go to daycare.  George’s sister spent a lot of time at the house taking care of mom during the day while the caregivers still did their morning and evening shifts.  She appears to be doing better in the pneumonia arena but this has left her very weak and unsteady on her feet.  She started back to daycare for just a few hours a day for the past couple of days – today we will try for her normal Saturday routine of about 6 hours and see how she does. Tomorrow I will be on-duty with her – and will allow her to sleep in until her body says she is ready to get up.  This house is sort of a mixed up “sandwich generation” where I care for hubby and mother in law rather than mother in law and young children.  When I went to the caregiver meeting last week and said that I also care for my mother in law who has Alzheimer’s (and laughed while I said it), they all looked at me with amazement.  I said, “Hey, at least I am still laughing!”  God has some warped sense of humor sometimes… and laughter is a glorious way of coping. 

The “C” Word – Day 119 Banner day

Today was special.  George made a couple of major accomplishments since all of this started.  He wore jeans for the first time in over 2 months.  We had to go through his closet to find his “skinny” clothes – 2 sizes smaller than the prior ones.  He came downstairs in them and I had to do a double take.  He is so skinny now.  He teared up – not only because of the size of the clothes, but he looked in the mirror and truly saw the change there.

We then went to run a couple of errands – and I asked if he would like to take a turn at driving.  So he drove us around today.  We stopped at the mall and walked a little bit there.  Then we went to visit some dear friends, Rob & Angie.  Rob has had his own trials this year so the four of us have gotten closer this year as we have all been dealing with issues.  We have taken turns lifting each other up in prayer and spent time encouraging and visiting. 

After that we went out for lunch to one of our favorite Mexican restaurants.  George ate one of his usual meals and did quite well.  Of course, we are both still full so dinner will be something small. 

While he still has discomfort when sitting and laying down, those seem to be getting slightly better with each day.  This was helped somewhat by getting one of those special cushions that take the pressure off of the tailbone.  “Little by slow”, progress is made.

I told George that him being able to drive again means that he does not have to tell me “the next time you go shopping can you get _______?”  He can get up and take himself shopping.  Hmmm, maybe I can get him to do some of the weekly shopping??  LOL!  

The “C” Word – Day 114 Two Months post-surgery

November 30^th – I suppose this is a milestone.  September 30^th will forever be a major milestone every year.  For now, each 30^th of the month that ticks by is a milestone marker determining any progress made. 

George asked me last night how I thought his progress is going.  I was not sure how to answer that.  After all, I have never been through this before so I do not have anything to gauge a proper response.  Sure, he is making progress - - but is he ahead or behind expected progress?  I don’t know if anyone can measure that.

I remarked that I thought it was going much slower than I had expected.  He agreed.  Did the abscess set him back?  Was it something else?  Is this normal progress?  In his mind his original return to work date was the first of the year.  The oncologist has determined it will, at best, be February 1^st.  At this point I would have to agree.  While George can walk nearly around the block, he has to sleep afterwards.  His stamina is pretty low – so staying alert for at least an 8 to 9 hour work day would be very taxing. 

His brain is not fully “functional” yet either. He forgets things easily sometimes.  Not sure if this is due to malnourishment, vitamin deficiency or what at this point.  The fact that he is just sitting all day long with the boob tube on probably doesn’t help.  I have tried to encourage him to by giving him couple of ideas to get his brain active but he does not appear to be motivated to do so.  Sometimes it feels like I have two Alzheimer’s patients in the house.  I was not prepared for George’s memory to be like this at this point in recovery. 

‘Tis the season to decorate the outside of the house.  I am either going to have to ask for help – or am going to have to figure out how to do it myself as George is not up to attempting to do it.  Perhaps I can get him to stay outside and supervise??  This has been his job to do (mine is to take care of the inside decorating).  These past few months I have had to learn how to carry a lot of the “load” for maintaining the house, the bills, etc. in addition to doing the things I normally do.  Some things have become less important and put off for the time being.  Trying to  remember to do the things I am not normally responsible for is sometimes hard! 

After speaking with George about where he is in the recovery process and what issues he is frustrated with, I encouraged some pro-active steps.  A special seat cushion would help.  I told him to look it up online.  I told him to find one and order it up.  He says, it looks like they have them at Walgreen’s or Target. I tell him that it is easier to order it up and have it in two days then have me run around to find out if the stores actually have one in stock!  It is not like I have a lot of spare time.  Today I have to keep an eye on Mom all day – and she is not feeling well so once she is up it will require extra effort to care for her.  The other thing he needs to do is track what he is eating, how much he is eating, and what effect those foods have on him.  This will not only help us determine nutrition and calorie intake (he is still losing a couple of pounds a week) but also enable us to figure out which things do not process properly given that he has a few less organs to help them.  If he can do that, then perhaps we can meet with the cancer nutritionist to come up with a plan to get him back on track and get the most bang for his buck.  As much as I have tried to help in this area I have been pretty much a failure – and George has come to resent my assistance in the nutrition arena. 

George is tired of the constant discomfort in his body yet he has spent minimal time trying to figure out other ways to change that. (This is not to say he hasn’t spent a lot of time thinking about them – he just has not been able to come up with an adequate solution.)  I am trying to give George some active responsibility for making changes by suggesting these two ideas.

So, where do we stand two months post-surgery?  If you measure it by where we were a month ago then he is doing much better.  He is having some success with taste (there are still many things that are still not quite right) and therefore is at least eating a little bit.  He is a moving a little bit more.  He is awake more of the day.  His wounds are all closed and healing well.  He does not have any edema.  He has less bouts of nausea.  He can speak in full sentences without coughing or losing his breath – in fact he can carry on full conversations for long periods of time.  Yes, progress has been made.  There is still much more to be made, but compared to where we were a month ago, this is definitely better. 

The “C” Word – Day 100 Reflections

Unbelievable that we have hit the triple digit day of our journey.  The days have sometimes flown by and yet other times have dragged on and on and on.  It seems that I have “lost” three months of my life to this disease.  Time that cannot be given back.  Time that I do not want to experience again. 

The need to blog was as much for me to “unload” as it was to keep people in the loop without having to repeat over and over what was going on with diagnosis, prognosis, treatment and recovery processes.

Some of the things that have been lost during this time are not replaceable.  Vacations long planned and anniversaries among them.  The feelings that went along with these were among the lowest I have felt – the anger of feeling cheated by this disease as it “took away” my vacation time. 

This disease has been all-consuming, playing on our every movement and every emotion.  Minutes ticked by, each one reminding us that we are like chess pieces with each move being carefully thought out and planned yet never knowing for sure if we would win the game.  So many risks with whatever choices needed to be made. 

The planning involved was much like an event planner.  Between scheduling doctor appointments, X-Rays, CT scans, lab tests and surgery dates, it was a busy time.  Beyond that was hospital time and recovery time.  We also had to take into consideration when to start and stop both Short Term Disability (SDI) provided by the state and the Short Term Disability provided by George’s employer.  Setbacks included additional time in the hospital after the initial surgery and a second nearly week long stay after complications set in.  After release from the hospital there are still doctor appointments and lab tests nearly ever 7-14 days.  Hopefully that cycle will stretch out as George moves into the next phase of recovery. 

Never in a million years were either one of us prepared for the emotional roller coaster that this disease has rendered on us.  We have been left feeling volatile and vulnerable at the same time. One minute on a high and the next in such despair.  We have felt as though we have had no control over our lives, especially when we were at the mercy of the hospital routines and procedures.  There were so many interruptions in our days and nights for “one more test”, “one more bag of something for the IV”, vital signs and such.  Lack of sleep led to exaggerated emotions, especially on those days when we heard we would be held “in prison” for one more day. Our lives in limbo as the days dragged on and on.

As a couple we were also stretched and strained.  In the beginning there was much silence as we each tried to deal with the cards we’d been handed.  The “c” word permeated the house as a dark cloud hovers before the rain.  George’s brain froze, seized by fear, left me to take control of nearly every move that needed to take place.  A forced learning curve took place as I navigated doctors’ offices and labs and radiology and all those things required to understand what was going to happen over the course of the next weeks and months.  I moved from wife to encourage to advocator to nurse with each phase of the process.  I stayed by his side day after day to make sure that he was taken care of, to help where needed, or just to hold his hand when that was all I could do. 

My strong “front” hid the true feelings going on inside not wanting to cause further upset or worry with George.  “I can handle it” was what I believed. What I found out was that I could not handle it as well as I thought I could.  Always one to view the positive, as time went on it became more and more difficult to maintain that focus. I felt badly for getting upset when George would not eat because, to me it was important for him to eat to maintain or get back his health.  I would become angry seeing George’s seeming indifference to whether we had “one more night” or not in the hospital when all I wanted to do was go home and curl up in my own bed and leave the nightmare behind.  I often wonder how others get through this when they have much longer treatments than we had to endure.  How does someone go through weeks or months of chemotherapy or radiation which leaves them unable to taste, eat, or even get up and move for months on end?  My own experience will be so short compared to theirs, yet it was torture for George and for me to endure weeks!

One of the things we discovered over the past 100 days is how much we needed others around us to bolster our spirits, to pray for us when we were down, to shout to the Lord for us when we were frustrated and to allow us to cry when the tears started to flow.  When we felt we had nothing more to give, they were there for us, quietly lifting us up in prayer to give us the strength to go that “one more day”.  Social media has enabled us to get immediate feedback for prayer requests and encouragement.  Each “like” and each comment saying “you can do this”, “we are here for you”, “praying for you and for George” meant the world to me.  We could not have done this without the hundreds of prayer warriors around the globe. 

The power of faith and prayer have been evident and clearly witnessed during this time of our lives.  Some prayers were answered almost immediately while others showed themselves in “God’s time” (and will continue to do so).  The answers to prayers have literally brought us to our knees and made us cry.  It is and extremely humbling experience.

We could not have done this without the support of our families.  The girls have spent extra time with George (even when he was unaware of it) and with me to encourage and help.  George’s sister and niece have had to step up and spend countless nights at our house in order to care for his mom.  His sister has had to step up in a moment’s notice when we ended up in the emergency room and then spend a few more unexpected nights during the latest setback.  Their help with Mom has enable me to concentrate solely on George’s needs and my own.  There is no way I could have taken care of both of them over the past few months. 

Here we stand, one hundred days after diagnosis, on the threshold of recovery.  Finally George is beginning to feel a bit more human though he is far from being where he was before surgery.  Physically he has lost over forty pounds (not including the thirty he intentionally lost at the beginning of the year) and is at his high school weight.  His clothes hang on him, reminding him of how he used to be.  His legs and arms are thin with little muscle tone after weeks of sitting in chairs or laying in beds.  I joke with him that I can no longer come to him to have him open that stubborn lid on a jar especially when it is me who needs to help him pull the tabs to open the orange juice container or get the milk carton open.  There are times he feels pathetically helpless – something he hates to feel because he has always had an “in control” demeanor. 

Every time he feels a twinge of pain he wonders if something else is going on.  His mind toys with his psyche.  Is this something to worry about?  (Given the fact he had no pain to tell him he had cancer nor let him know he had a bad abscess, he now tries to give credence to anything that might be a warning sign for trouble ahead or worries about things that are probably normal for his body to be experiencing right now.)  There is no guarantee that the cancer is gone for good so the “C” cloud will forever be hanging over our heads.  From here on out, he will worry when it is time for each lab test and each CT scan as those are what have detected the cancer and subsequent abscesses.  All we can hope for is that soon we will find what our new normal is and hold onto that for as long as is possible and try not to worry so much in between each test and scan that will be part of our future.

As a couple we are stronger having gone through (and still going through) a cancer diagnosis and horrific surgery.  One cannot take life for granted when you go through this disease.  For a period of time we did not know if we had a future.  Indeed, until the word came out from the surgery that pronounced “it’s a go” we had no idea if there was going to be a small window of time to live or a larger one.  In the waiting room there was a collective sigh of relief that surgery was proceeding.  The hardest part for George will be putting this behind him in order to effectively move forward with the art of living.  We need so much to find joy and spontaneity in our lives and part those dark clouds that have been hanging around.  We have to figure out how best to live our lives and enjoy whatever time we have as no one has a guarantee for tomorrow. 

Our futures now look somewhat different from what they looked like months ago.  When you stare death in the face, somehow the things most important in life are made vividly clear.  First and foremost are the “three F’s” – Faith, Family, Friends.  They are what makes life worth living and give us the strength to move on with our lives and live our lives in a way that makes God proud of us. 

While we do not know exactly what the future holds – or how much longer we have on this planet – we do know that we are fortunate to have “one more day” together.  Even though we are formulating a plan for what is next in our lives, we also know that we must listen for that “still, small voice” which may be God re-directing us in a way we did not know possible.  He is the ultimate conductor and has been guiding us and leading us all of our lives. 

I may not blog regularly anymore.  It is time to allow our lives to unfold.  I will post now and again when something comes up that seems relevant.  There may be days I need to reflect a bit more or unload a new frustrations.  For those who have been following me on this blog, I thank you for being there for me, for praying when you saw the need, for letting me know you have been “watching” our progress and for your encouragement.  It has meant a lot to me and has not gone unnoticed.  It humbles me to know you care about us.  Thank you!

Dawn

The “C” Word – Day 96 Turning a corner

After all of the ups and downs of the past weeks and even months, it appears that things have finally turned the corner!

Since the return of taste buds, George is experimenting with the taste of foods and re-introducing them little by little.  On the way home from the hospital we stopped at Carl’s Junior for a Western Bacon Cheeseburger (ah, bacon – the first food he tasted).  Since then we have had burgers, Chinese food, Mexican food and even fried prawns.  Not every taste or texture is back yet but things are slowly improving.

One of my desires and hopes was that George would be well enough to take me out for my birthday.  (Honestly, the first one was for being home on our anniversary – and that did not work out.)  We did go out even though it took a lot of effort for him to do so.  This was the first time we have been out to eat in over six weeks (and is actually also the first time we have gone to a non-medical place in that amount of time as well).  So it was a banner day!!

George is still very weak.  He has lost so much weight over the past six weeks that his shirts all hang very loosely on him.  Once things settle down and he has some energy we will need to make a shopping trip to find clothes that fit him better. 

However, things are doing better than they were a week ago.  The extreme shortness of breath is gone.  The appetite is slowly returning.  The smiles are more frequent.  Slowly things are getting better though it will be quite a while before things reach our “new normal”.  It has been six long, twisty weeks since surgery.  We feel like we have been to heck and back and forth and are so grateful that we seem to be on the downhill side of the battle.  We pray that this continues to be the case.