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.  

The “C” Word – Day 93 Another Roller Coaster Day

One thing we know for sure is that cancer and surgery puts one on one rickety roller coaster ride.  Each moment brings its joys or tears, sometimes happening in such quick cycles that you do not know which end is up and which one is down.

Today was one of those up and down days.  We sent out prayers for a “Sunday miracle” that we would be able to go home today.  The drains appeared to nearly stop for awhile this morning and our hopes raised some that the tubes could come out. 

This morning, one of the “stand in” doctors came in and virtually told us that he did not expect us to go home for a few more days because there is still drainage and some of the blood counts are not really back in balance.  I totally spiraled down with that news.  A few more days??  Not now, please!!

George and I spent some emotional time in the room together.  Tears flowed, words choked out.  Why is this all happening??  Why can’t we catch a break!? 

Fortunately for us, a few good friends stopped in for a visit today.  It gave us a diversion from our heart broken souls.  George broke down as he talked to these friends and tried to describe all that he is feeling right now.  They all offered their own words of strength and comfort and some of the even knew exactly what he was feeling.  For a bit of time we also were able to talk about things outside of our own little hospital world and feel a little more normal. 

I had also decided that I need to get out of this room for a while and made the decision to go home to sleep tonight.  While George likes me here for the morale, he understands my need to have some time to myself.  I also reached out to see if friends might be able to sit with him part of the days he would be in the hospital so that I could go to work yet know he had someone to sit and visit with him.

Then… our Sunday miracle came into view.  The surgeon came in – and he is not on call this weekend.  He came in to check the charts and see how things were going - - for us.  After some discussion, poking and prodding he gave two choices.  George could go home today and then come back tomorrow to get the drains removed.  Or spend the night and he would come in tomorrow morning and remove the drains and send us home.  George opted to not have the back and forth and said he could come back in the morning and start processing us out the door to be gone around noon.  YES!!  An exit strategy. 

This roller coaster has taken us up and down and up and down again.  Sometimes repeatedly over the course of days.  Sometimes, like today, it did that repeatedly in the matter of hours.  Although I don’t feel like I have ever gone through these highs and lows like this, I have forgotten that there was a time nearly 15 years ago that I did just that.  We take so much of life for granted.  Then life throws us a curveball and we act and react to the circumstances in whatever manner works for us.  As time goes on we forget about it until the “next time”.  This has been, by far, one of the most difficult times I have ever had to go through.  Logic and emotion do battle with such vengeance at times I feel like I am being ripped apart and pulled in so many directions at the same time that I do not know what the “right thing” is sometimes. 

Then, I realize we have to step aside and look at the reality.  The reality is that George IS better.  He is better than he was a month ago at this time.  He is better than he was just five days ago.  He has his taste buds back.  He is slowly getting an appetite.  He can walk without being breathless.  He can talk without coughing.  He is responding to the antibiotics for these abscesses.  And things will still progressively get better from here on out.  We believe or are hopeful that this was the last hurdle for this particular surgery.  We hope this was the last very deep valley we have had to go through at least for a while. 

The surgeon and George talked about the emotions for a bit today.  The surgeon said that he would be worried for those patients who express no emotion when given a diagnosis of cancer.  He says that the ones who allow themselves to express emotions and shed tears are the ones he knows will get through it.  He cannot imagine what the emotions are for someone like George who had a huge surgery.  But, those emotions are expected and are part of the reality of the diagnosis.  He sat and chatted for some time.  He has been a blessing to us through all of this…. And when he gave us news that we will get our “walking papers” tomorrow we rejoiced…. Somewhat cautiously, but we sent up a silent, “Thank you, God!” today! 

The “C” Word – Day 92 Never Ending Changes

Finally, last night we were pretty much ignored (though we did make a comment to the nurse about possibly not interrupting sleep so often).  Part of this was the fact that the drains had slowed and the vitals had stabilized so the need to come in so often was not needed.  Aside from the 12:30 vitals and 4:15 labs, we were left alone.  They had given George his Ambien last night so he slept quite well. 

The morning was a little busy with all of the “stand by” doctors coming in as our regular doctors are off this weekend.  The biggest downer of the day was our surgical stand-in doctor.  Although our regular one had said that once they figured out an antibiotic and started it that we could have the tubes removed and let the meds to their job.  This one said that as long as things were draining the drains would stay in (even though one is running very clear fluids right now which means the infection has cleared up).  How long that will take is anyone’s guess.  Clearly that put us in a down mood for the rest of the day.  We know that things have to be done right but just when we saw light around the corner, poof, it disappeared! Frustrating feelings again.

George was still enjoying his taste buds today.  Keith brought Oreo cookies last night and George had them for an afternoon snack – and LOVED them. 

The other hard thing today was the fact that George’s potassium levels dropped again so they started an IV of four bags of potassium.  The solution burned in his veins so he spent the day with an ice pack on them – and also had to have them slow down the flow so it is taking at least twice as long as it should so he has had an IV drip for most of the day.  Once the bags are done they will wait a few hours and re-test to see if it is holding and then he will start oral potassium – only this time the nurse on duty knew about the capsules so he won’t get his mouth all bent out of shape.  The IV potassium is changing his taste buds though so that is definitely taking things in the wrong direction for eating purposes.  Praying that it does not go all the way back to no taste again. 

This evening we were moved from our ward to the one where we spent nearly two weeks.  The “sixth floor” was down to five patients so when that happens they combine with the other surgical ward – the C3 unit.  Down here we have to ask for snacks, ice, etc. whereas the floor we were on we had free access to everything.  That means more waiting around when we need something!!

We are praying for a Sunday miracle to happen… to have our surgeon’s “word” be the exit strategy and not all the stand in ones.  We want another ‘great escape’ so that we can get home again.  Lord, if it is your will, we believe our patience to have been tested to great lengths these past few months and really need to try to find our new normal at home.  Please heal George from this abscess totally and completely.  Please allow the drains to stop flowing and for the antibiotic solution to be found quickly in order to allow passage back to home. 

The “C” Word – Day 91 Hallelujah Day!

First, let me tell you about the longest night.  We were so tired yesterday so decided that perhaps we could get George to turn in a little early so he could get a few hours uninterrupted sleep.  At 8:30 we had his bedtime meds administered and he climbed into bed.  I pulled my bed out and my computer to get a few things done.  I could hear that George had fallen asleep.

At 9:20 the CNA came in and drained the abscess fluid.  No sooner had she gone from the room and the nurse came in to flush the drain lines.  At 10:30 the pulmonary specialist showed up for the 5 minute nebulizer treatment.  At 12:10 the new nurse on duty came in for vital signs.  At 1:30 the CNA came in to empty the drain and 2:30 the nurse to flush the lines.  More vital signs at 3:30 AM and at 4:20 he phlebotomist showed up for lab work!  At 5:40 the nurse came in to drain the abscess bag and while she was finishing up the surgeon showed up.  Of course when each of those people came in the room the lights had to be turned on!  Each time I cursed under my breath, “seriously?  How is anyone supposed to rest!?!?”

The surgeon reported that he had not seen test results yet from the abscess drains.  They have to make cultures so they know what antibiotic will kill it.  He said that the abscess was quite massive and he was surprised that George was not running a continual fever and in a lot of pain.  (Again, no symptoms!)  He made a comment that the plan was to get us home “this weekend”.  Ugh!

The pulmonary specialist came in and described what had to be done with the culture and testing, etc.  He explained that it could take up to 24 hours to figure out what the infection was and another 24 hours before they determined what would work best for it.  That puts our stay up through possibly Saturday.  He explained that the pulmonary function test he ordered up could wait until next week to give the belly a chance to heal so they could get a good test.  He did not feel that a plasma exchange would be necessary based on the fact that the high blood levels were in direct correlation to the abscess.

George felt comfortable with all of the news and was no longer feeling reluctant about staying.

We ordered up some breakfast – bacon and rice krispies.  George took a bite of the bacon and started crying… tears of joy and praise.  The bacon tasted like bacon!  Hallelujah!  Taste buds are returning.  The day went quickly uphill from there!  While his breathing is not quite normal yet, it is returning.  He was able to speak today without being labored, without coughing.  And we had several visitors who spent a great deal of time talking with him.  And he did it all with a smile, with energy, with wit and without great effort on the lungs.  He ate three small meals today which had more calories than he has had on a daily basis in quite some time.

So we have a plan.  Once they determine what antibiotic will work, put in some sort of oral form and start taking it.  They should then be able to remove he drains and let the antibiotic do its’ thing.  And then we should be able to go home.  The time is unknown, but there is a plan.  It was a great day today!  Hallelujah!!

The “C” Word – Day 90 Highs and Lows

The past 48 hours has been a time of highs and lows for us.  The Ambien gave George restful sleep without “hangover” side effects. The steroids gave him more energy and a willingness to try to eat.

And then the world crashed down again.

The oncologist on-call doctor saw George’s test results from Tuesday and was very concerned about extremely elevated WBC and platelet counts.  He suggested that we go to the ER and have further testing done to determine if there was clotting or infection going on.  So, after work I packed up George and away we went.

After a chest x-ray determined that there was some fluid on the lungs but not enough to cause such shortness of breath a CT scan was ordered.  This showed no clotting but the lower abdominal area showed several areas of possible abscess.  He needed to be admitted for the night and they would determine if surgery would be required or drainage. 

My “boss”/co-worker brought over some food for me and she spent some time with us saying prayers for George and giving him a great pep talk.  When she left he was feeling a little better.

It was a late night as we kept waiting for the surgeon to come in to finish admission but he never did so the lights went out as 12:15AM after shift change.  The surgeon showed up and let us know what the procedure was and that he had put the request in during the night so hopefully it would happen earlier in the day.  George was in great spirits still this morning and joked with the doctor and some of the staff. 

Then the pulmonary specialist came in and stripped him of that joy by telling him about the processes for the lungs.  He said they did not want to do a thoracentesis as they felt they should first try non-evasive procedures.  They gave him Lasix via IV (he was getting pill form at home) and then ordered up something called IPV treatments.  This is a short treatment (about 5 minutes) that will be done very eight hours and is meant to push air into the lungs with some pulsation in an effort to open up the lung cavity and push the fluids down.  He also order up George’s favorite spirometer to use throughout the day.  He also ordered up some sort of test for the lungs and an echo-cardiogram to check on how the heart is pumping.  All of this left George very down and out because we know how long it takes for stuff to happen around here.

True to form, the special test that needs to be done – well the person who does those came in and said it would be “this afternoon or tomorrow morning”.  What???  She says they needed to work around the schedule for the IR (drain) procedure and that it would be best to do the test after the IR as the abscessed areas might be putting pressure on the lungs as well.

The IR was finally done about 1PM and while he was down getting that done the gal for the echo-cardiogram showed up and I told her was not here right now.  She said she would come back (she never did).  Then they guy shows up with the breathing treatment.  He said he would come back and he did, twice…. Finally catching George at about 4PM.  The IR drainage took two hours!  Apparently they pulled a lot of fluid from two specific areas that were badly infected.  He came back to the room with two icky looking drain ports that will be left in overnight.

By the time George was able to order up real food he was no longer hungry so ate only a small bit.  He was so depressed from the days’ activities and just felt like things were not moving forward as they should.  I tried to boost him up and tell him that we had made some progress but he was not convinced.  He was also hurting from the procedure performed this afternoon.  On top of all that we are not at all sure that going home tomorrow is a possibility.  We have a sneaking suspicion that things will drag out and that he will need either more heavy duty antibiotics or further stuff on his lungs. 

This evening had a bout of nausea and I decided he should try to get a few hours sleep between 8/8:30 and 11-12 when they will be in for another lung treatment and vitals after the change of shift.  Then, hopefully he will get some uninterrupted time until at least 5AM.  (me, too!)

I was pretty tired today too and we both spent time trying to close our eyes and just get some rest or a cat nap in during the morning hours.  I plan on turning in shortly to get some much needed rest myself.  I was able to run home and take a shower this evening so at least I feel clean.

As stated in my earlier blog, it turns out I will not get away this weekend to see the grandkids…. I am glad I said nothing to George because he would have felt really bad about spoiling yet another planned time away.  I actually did not get my hopes up too high… so I am not as disappointed as I once would have been.  Sad to say that this is just the way it has to be for now.  No long-term plans until George is in the clear. 

I am planning on the massage tomorrow, wherever George may be.  If he is still here it is easy enough because it is just across the parking lot.  If we are home, I will just drive back here.  Either way, my back and shoulders are sorely in need of attention.  The bed in this room is not as good as the last one.  It appears to be broken so I cannot pull it out all the way so have to stay curled up most of the time.  Even if I could pull it out, if I did there would not be enough room for the nurses to get to their desk when they need to or to change out the IV stuff, etc.  I will REALLY appreciate the massage tomorrow!

The “C” Word – Day 88 2nd Oncology follow up

Today we saw Dr. Sheh again with CBC lab work prior to going upstairs for the appointment.  Three points to cover today include appetite, breathing and sleep issues.

Upon weigh in I note that George has lost 8 pounds since Friday.  He keeps attributing it to the Lasix which causes water loss, however 20 pounds lost in two weeks is more than just water at this point.  The doctor is a little concerned about the excessive weight loss. 

We talk to the doctor about the issues bothering George right now.  We take a look at the x-ray and, indeed, it shows some fluid around the lower portion of the right lung.  A thoracentesis will need to be done.

George describes the problem with his appetite (or lack thereof) and how the meds prescribed last week did not really help so we stopped taking them as of yesterday.  Between that, the weight loss and lack of energy, he prescribes a steroid to try out.

We talk about the problem sleeping and that we are trying a low dose (half a pill) of the Ativan that had been prescribed.  Because this drug is habit forming, the doctor prescribes Ambien in place of that. 

The lab results show high white blood cell count and George reminds him that he does not have a spleen anymore.  We realize that we will have to remind every doctor about this from now on because, even though they sort of remember the problem they forget!  The blood tests also show an extremely high platelet count so he has us re-do the labs before going home. 

All points covered that we need to address.  On the way out we start the process for the thoracentesis but it looks like it will not take place until at least Thursday because it requires authorization from our insurance and additional lab work and write up from the doctor office.  The additional lab work is added to the one we need to re-take on the way out. 

The doctor phoned George this afternoon and said that the repeated lab work still came out with high platelet counts. He says that this is sometimes indicative of a blood clot trying to form.  Normally he would say to take an aspirin or a half an aspirin every day but because we need to have the thoracentesis done we cannot do that just yet.  He says he will explore the issue further and call back. 

So we go to bed tonight with half of the problems being addressed via medication over the next twelve hours – but the worst one, the breathing, has to wait a bit longer.  At least the solution is on the horizon and we can hopefully see it coming. 

On hold is the fact that George’s sister has offered to spend a night at the house watching Grandma and George so that I can get away and go visit the grandkids in Roseville.  I haven’t mentioned it to George yet – nor have I committed to it just yet.  I have only told my daughter that it is a possibility.  I don’t know what the end of the week holds yet so I hesitate to commit.  I am afraid of being disappointed that the plans won’t go through because that has been the case for the past few months and the let-downs are hard to deal with.  Life in limbo – life on hold.  That has been the trend since August and it can become quite weary after a while.  While I keep telling George he had better improve enough to take me to dinner on my birthday, I am holding my breath because there is still the possibility that won’t happen.  I still hope – I still hope that the thoracentesis will take place and he will find relief to breathe again – and I still hope that the new meds start working and that he also wakes up one morning to find that his sense of taste comes back. 

Several other things on my mind this week as well.  Today would have been Mike’s 57^th birthday.  On Thursday my sister is having open heart surgery.  All reminders that life is precious and each moment is precious.  Somehow I need to focus on the positive things … that is sometimes hard to do when the tough stuff is staring into my face.  The tears come all too easily these days.

Why the tears?  I try to evaluate that.  I thought about that the other night while lying in bed.  I wonder why I cry when someone offers help…. Why I cry when I reach out for help (the cancer care organization) . . . why I cry for no apparent reason sometimes . . . I attribute some of that to the belief system I was raised in (Christian Science) and am reminded of the time when I had to have surgery when I was 30 and the emotions I went through at that time.  What it boiled down to was the fact I was raised to believe I was the perfect creation of God and there was nothing wrong with me . . . yet by having surgery and taking medicine I had somehow failed . . I was not ‘perfect’ – I was human, I was vulnerable.  In my parents eyes (and therefore reflected on to me) I had succumbed to those very things that I had been raised to stay away from. That was a tough time in my life, to know that I could not turn to my mother when I needed her the most.  I did not tell her about my surgery until days after I had been home.  I knew she would be disappointed in me.  Perhaps there are still some residual, subliminal feelings still there.  To admit that I need help is still hard for me.  Harder than I realize.  It shouldn’t be… but those lessons I learned are really hard to break away from.  

The “C” Word – Day 86 What will the week bring?

Five weeks post-surgery now.  Still clearly not out of the woods.  George is still having trouble with his breathing which makes everything else he needs to do difficult at best.

Tomorrow I will take him for a chest x-ray.  Although I am not sure why as this will only tell if he has pneumonia I think.  In the hospital we had the x-ray to rule out fluid in the lungs and then he had to have a CT scan to verify he had fluid around the lungs… I sure hope we don’t have to do both of those this week!  I do believe we will need another thoracentesis procedure (the same thing we had done the day we finally left the hospital).  It is an outpatient procedure.  He would feel some immediate relief in the lungs but then feels where they push the needle through his back.  If we have to do this again I hope we can get it done soon and then hope that it does not continue because this is agonizing for both of us.  I think if we could fix this once and for all we would see much greater progress for George.

This was a relatively quiet weekend (well, the house has been quiet for weeks now).  George was feeling a bit depressed yesterday, having a woe-is-me kind of day.  I told him that was perfectly fine because I certainly have had my share of them.  He says that even though to us it does not look like he is trying to make forward movement that he is trying – but mentally or physically he is just not able to do much.  He also knows how much of my time this whole ordeal is taking and how much I have given up in order to help him make it through this far.  He feels badly that I have to change the dressings on the newest wounds and help him do basic daily living skills sometimes.  We sat together last night and as I massaged his hands (which are a LOT smaller than they used to be) I couldn’t help but note how fragile and frail he is right now.  It is quite scary.

Steph came by for a visit yesterday.  It was a tearful reunion for him because when he went in for surgery he did not know if he would come out.  He does not remember her being in the ICU unit several days after surgery so this is the first time he has actually seen her.  He had asked her to give him a mani-pedi as he sorely needed his nails clipped.  She readily agreed and did this while I ran out to do some shopping. 

We talk (a lot) about getting calories in.  While the doctor suggested he eat five to six times a day (and try to eat some protein bars which give a lot of bang for the buck), George is having problems with this idea.  Doctor said to eat something every two hours.  Of course, there is push back in regards to this.  After one day he already claims he is tired of the bars (he had only one on Friday and a half on Saturday).  I told him that we are running out of options for getting nutrition into him and if we can’t somehow get his stomach to accept a little more food that our next option is an IV… and I REALLY do not want to go there.   That was one of the things we discussed on Friday – that nutrition or lack thereof is a vicious cycle.  He needs food to get energy but he is lacking the energy to eat.  It takes a conscious effort to break that cycle.  He did pretty well today as every two hours I reminded him he had to eat something.  He did not take in a lot of calories today but he did eat a little something.  He discovered that he can actually taste regular Lays potato chips and enjoyed eating them.  If only his sense of taste would come back he might find trying to eat more satisfying. 

I do not know what he will do while I am at work this week.  I will write reminders as I have been doing – but whether or not he actually reads AND follows them is out of my control.  While I know I have to “let it go” it is difficult for me.  I want so badly for him to gain some control of life.

While this week I know that I have at LEAST two places to take him (x-ray and oncology), I also have some things for me to do.  I will attend my first caregiver support group on Wednesday evening and get a nice one hour massage on Friday afternoon.  Of course, all of this is provided there are no other hiccups in the agenda – and as I said, there will probably be at least one other and that would be the thoracentesis. 

I also plan on getting back to my exercise activities starting with my 6AM half hour “sunrise pilates” classes twice this week and hopefully will try to get back to the gym one morning either this week or next.  The toll on me physically is beginning to show as I haven’t been able to get any activity in myself – and my eating habits have been horrible since I spend so much time appeasing George by driving around to various fast food places as he tries to find things that he would like to try to eat. 

So this is guaranteed to be quite a full week between work, appointments for George and activities for me.  

The “C” Word – Day 84 First Surgical follow up

We did lab work yesterday in preparation for today’s appointment.  While some of the chem levels were high or low, they were just .1 - .3 off the “norm” so nothing worrisome.  The surprising thing was to see the potassium levels were high – that is a first since we started all of this.  The doctor said he ordered the labs to see how George was tolerating the Lasix (to relieve the edema).

When George got up this morning he had another part of the stitch line that had opened up and had a good deal of bloody fluid on his clothing.  After his shower I carefully covered that and was glad that we had an appointment today.

Upon weigh in, George is now under 200 pounds.  He probably has not seen that weight in nearly two decades.  It was also a significant drop from just 10 days ago when we were at the oncologists office. 

The doctor came in and discussed how things are going.  He did say that the recovery is going a bit slower than expected…. He expected slow but this is a little bit more.  We talked about the breathing issue and he said we should get an xray by Sunday or Monday in order for the oncologist to look at the scan on Tuesday and determine if there is fluid around the lungs again.  He said to wait a couple of days before doing so to see if the Lasix will release fluid or not.  It is not unusual for fluid to build up after having it pulled off once (which George had done on the day we were released from the hospital). 

He looked at the now-open wound and stuck a q-tip deep inside and said that the wound was clean.  He showed me what I was going to have to do in order to ensure that the wound stays open long enough to heal from the inside out.  Kind of gross.  I had to stop and buy a ton of gauze on the way home in order to do this procedure.  I hope my stomach can handle it.  Otherwise I might call my nurse-neighbor over to give me a hand!!  [I can remember when Mike had a large sunburn boil on his shoulder that he wanted me to ‘pop’ and got nauseous just thinking about it – fortunately in that case it broke on his own so I did not have to do it.]

The doctor asked George how often he ate and George said, “three times a day”.  He told him he needs to eat six times a day and that he should always have some sort of high protein snack or similar thing with him at all times.  He said George should set a timer to go off every two hours to remind him it is time to eat something.

After our appointment we went over to CancerCare Point, a non-profit that supports cancer patients, survivors and caregivers.  We need to “plug in” there for some support.  As we spoke with the social worker there it was evident to me that I am not dealing as well as I think I am.  Like George, I am very independent and do not like to acknowledge the fact that this whole ordeal has been more difficult than we both realize.  I don’t like to admit that I am not as strong as I look. It has taken its’ toll on us physically and emotionally.  Our feelings are just beneath the surface. 

It is also evident that I need to take better care of me. While work is my daily “escape” from the doldrums at home, it is work.  I have pledged to get back to starting my work outs next week.  I am signed up for the monthly caregiver support meeting next Wednesday night, and the social worker signed me up for a free hour long massage next Friday afternoon at the center.  Being with other caregivers will be an outlet for me and will give me an opportunity to meet other people dealing with cancers.  Ours is a bit more unique but there will be some similarities.  When George is ready, he too will do some of the activities that the center has to offer.  It may be awhile for him – he will not be driving for a bit still.  He has a journey to travel still in order to get his strength again – but he will need the support of other “survivors” for his emotional well-being also. 

Tonight is Halloween.  Normally we would sit outside with some props and hand out candy.  But today we got some rain and it is dismal and cold out, so I will be popping out of my chair handing out candy while George sits and watches TV.  We may call it a night early and try to get a decent night sleep.  George was able to “dial down” his CPAP last night and that helped – and the doctor told him he can dial it back even further.  We will see how he does with that. 

Last night, at 2AM, our fire alarm started to beep that it had a low battery…. The beeping continued even after I pulled the battery out so I put it in the garage to let it die down.  That meant that I was awake for a bit last night so I am a little tired today.  Hopefully sleep will not evade me and I won’t be awoken in the middle of the night again!!

The “C” Word – Day 82 New Meds do the job

The main “complaints” I have had recently were that George was still having signs of edema – mainly in his feet.  He also was having continued problems with his breathing.  The other major complaint was getting enough calories in his system to help him build energy.  I was lucky if he ate 400-500 calories a day.  Most days I would estimate it to be under 400!

I contacted the oncologist via George’s online messaging system and told him about the eating issue.  He recommended an appetite stimulant which we finally got prescribed yesterday. 

For the edema I made George contact his surgeon to discuss the issue and, on the surgeon’s request, called their office to get a medication to help with that.  s

So we have added two medications in the past day and a half… and they appear to be working.  The edema in George’s feet appears to be lessening (not only from the medication but from the “physical therapy” I have him doing).  His breathing is still labored – and he tires just walking from one room to the next.  We see the surgeon on Friday and will get that checked out a little further. 

The medication for the appetite is working as George did spend some time “scrounging” for food.  He snacked on crackers in between meals.  He ate a rather good dinner tonight.  Every little bit helps.

I asked George about how much time he spent out of his chair today and he replied “five minutes”.  I told him he should be doing more than that in a day.  I encouraged him to walk around outside tomorrow as the weather has been very nice (and it is supposed to rain on Friday).  He needs to get on his feet and get his muscles working!!  I know he had a big surgery but it has been a month now (can you believe it) – and feel that five minutes of getting up and moving around is not very much for this point in recovery.  I wonder if the surgeon will agree.

Tomorrow evening we get labs done for the Friday appointment.  It will be interesting to see how different they are from last week’s.  We should see some good improvement.

The “C” Word – Day 80 Many roles of a spousal caregiver

I have discovered that when going through a long and difficult disease that spouses must take on many roles.  Each of these in and of themselves is a stressor – so when you have to be all of these in combination it is no wonder that we have “break downs” on a somewhat regular basis.

Cheerleader (aka encourager):   “Come on honey, you can do this!”, “Just one more bite!”, “Yeah!  You did it!”, “Just walk around the room one more time!”  From the initial discovery when we are trying to get them to remain hopeful to post surgery “atta boy” when you get them to do that one extra step to help them recover, our spouses need constant encouraging and reinforcing that they are moving forward.

Advocate (aka decision maker): I learned early on that I was going to have to take the reins on a lot of decision making.  That was evident when he was not sure about making an appointment with a surgeon that he had never heard of because he was sure there were no experts in our area.  Since then I have had to make or help to make many decisions.  I had to learn how the systems work in the medical industry in order to know what to do next.  In the hospital I had to maneuver my way around the medical personnel and help him get the care he not only needed but deserved.  This was probably the hardest thing to do as each shift brought different staff with them and that changed constantly.  George was too tired and too confused to make any decisions on his own and being with him 24/7 was the only way I could ensure that I knew exactly what was going on with his care every moment of every day in order to understand where he was in his recovery.  Now, nearly four weeks post-surgery, I am trying to get him to take over some of the advocacy.  While it is sometimes easier for me because I do not have a problem contacting his doctors, he needs to be urged and prodded to take those steps because he is still uncertain as to what he needs to do or should do. 

Educator : Arming myself with enough knowledge to know what the choices are.  Does he need more medicine or a follow up appointment?  What are signs and symptoms I should be watching for?

Nurse:  In the hospital I became the nurse, helping him to and from the bathroom… bathing… changing beds and pads and gowns… adjusting pillows… The only thing I could not do was administer most of his medications.  There were a couple of them that they allowed me to help him “get down” as they required mixing and giving to him with his meals which he received irregularly.  Once home I needed to keep an eye on the stitch line and when a few areas appeared to separate I had to dress them and keep an eye on them regularly.  I have to keep an eye on the edema and remind him to move his TED stocking periodically to make sure he doesn’t cause more damage. 

Pill organizer and pill pusher:  I have had to learn how to maximize his pill taking on a daily basis.  Trying to figure out how to get them in during waking hours if possible.  But, sometimes that is not possible so I have had to set my clock to wake me up at 2AM in order to give him a medication.  Setting my phone clock to go off up to five times a day in order to remind him it is time to take pills…. And then ensuring that he takes the right ones.  He has no idea what I am giving him or for what most of the time.  He blindly relies on me to make sure he is taking his medications and needs them set up so when he is on his own during the day he knows what he needs to do.

Master calendar keeper: Beyond the pill keeping is the need to keep the calendar for all appointments.  I have done this since the initial diagnosis as his brain cannot keep track of any of that.  “Just tell me where I need to be and when.”  He has no desire to keep track of his calendar.  I just need to go over it every few days and remind him of any upcoming appointments.  However, he often does not remember exactly when they are.  Today, for instance, he knew we had an appointment this coming Friday but he does not remember what time it is even though I have probably mentioned it a few times.   Oh, by the way, I do not keep track of calendar events via a smart phone or electronic method.  I am strictly an “old fashioned” gal who keeps a small calendar in my purse and transfers that to a desktop one at home from time to time. 

Physical Therapist (aka creative engineer and massage therapist):  The only PT he got at the hospital was to make sure he could walk enough to be able to get around at home and to climb a flight of stairs.  Once that was accomplished they signed off and said “he’s good to go!”  Once we arrived home the harsh reality sets in and he barely walks around and, though he can climb stairs, after two weeks at home that is still a taxing event.  He needs continual reminding to use his Spirometer, to move his joints and legs around so that blood keeps flowing.  I have given leg massages to try to move the fluids in his feet and ankles around.   I realized that there were things he could do with a “yoga strap” or flex band to help keep his ankles and feet moving more while he sits in his chair.  I am continually looking for ways to ensure that he still gets some activity and that there are things he can do while being sedentary to help in his recovery. 

Suffice it to say, with all of those things going on it is difficult to find the time to just “be me” or to just “be a wife”.  I know in a prior posting after one of my rants that I said “I just want to be a wife” – and that is so true.  I am sure I am not alone in this.  And this is something that happens in all marriages – that there are periods of time when you are constantly in demand for things other than that of “wife”… when you have young children you have demands that make it hard to have “couple time”.  This feels sort of the same… for now I have a “child” in the house that needs a lot of attention, requires a lot of time to care for as cheerleader, advocate, educator, nurse, calendar keeper, physical therapist, etc.  I am sure there are things I am leaving out (like chief cook and bottle washer) – and there are the normal day to day things to take care of (bills, household chores, laundry, yard work) which get pushed aside to some degree.   The scales of balance are tipped so far off it is no wonder I fall off the edge now and then. When something happens that throws me off course just that “little bit more” it is no wonder I rant and rave.  I guess that is my prerogative.   Most of the time I do okay – aside from being a bit tired it has become somewhat routine.  But it is also why I am trying to get George to start re-focusing and learning how to do some things for himself again.  Again, I have to be creative – or I have to create workable “lists” for him to work from so he is reminded about doing those things that are important for the day.  But each little thing I can get him to do for himself allows me to get back an extra few seconds in my day.  I need him to be proactive, not reactive – because having to react when things get bad totally throws off my balance.

My goal for next week is to start getting back more into MY routine which means getting in at last two small workouts a week until I am back to regular workout schedule.  This week I am still catching up on all the sleep that I lost!!

The “C” Word – Day 78 Turning around

I am hoping that we have started to turn the corner.  Things have been improving ever so slightly.

It took a full day or two for the Benadryl to wear out of George’s system.  Although the transfusion may have given some energy because it raised his blood count and helped with the anemia, the Benadryl gave him less energy to use. 

On the plus side, the mouthwash and pills for the mouth sores has had very good results.  The lips and tongue are nice and clear.  It will take a while for his taste buds to grow back but every once so often he gets a sliver of taste.  He is still not eating a lot – under 500 calories a day is my guess.  He is getting cravings – but can only eat small amounts of whatever it is. Today it was a bagel with shmear from Noahs’ Bagels.   I told him he needs to promise that he will have at least one nutritional drink a day whether it is Ensure, Ensure Clear or Muscle Milk.  Or maybe his mouth will be up for a good Jamba Juice soon.  That will help!!

He still is getting edema, mainly in his feet – and usually one foot or the other, not consistently the same.  He keeps them somewhat elevated all day but a sitting position does not allow them to be higher than his heart.  And he still cannot lay flat so that the feet can be elevated.  However, at night it helps that he is more reclined than during the day.  I have given a few foot massages in hopes of moving some of the fluid around.  It would help if he got up and walked around a bit more during the day and got the blood pumping on its own.  Hopefully as he gets more strength that will happen more. 

Yesterday he treated me and Sara to pedicures and lunch out [he did not go – he helped pay for it].  Something “fun” for me to do as there has not been a whole lot of fun in my life of late.  He recognizes that. We have had some discussions especially when I get very frustrated.  He knows I am trying to help when I nag yet he finds it physically and mentally impossible to sometimes do what I am asking.  I try to back off some but have a hard time finding the balance between nagging and reminding.  He says I did a better job today. 

Today we spent doing a lot of nothing.  Although I slept pretty well last night I am still quite tired.  And he was not able to sleep much at all last night yet he hasn’t done too much sleeping today either.  He catnapped here and there but not really very well.  He is having some difficulty breathing, not all the time but in certain positions.  I told him he needs to be proactive and contact the doctor about any concerns he might have and not wait until whenever the next appointment happens to be.

I find that I am missing sleeping in my bed but with his problems he spends the night moving the head of the bed up and down (we have an adjustable bed) and also has problems with leakage from his mouth when his CPAP is on so it is best for me not to share a bed with him right now.  Until he can roll over and sleep on his side we will be “separate sleepers”.  This, of course, does nothing to appease the fact that we need to experience some “together” time… so every once in a while we might actually sit side by side on one of our couches – it might involve hand holding – and sometimes it might also involve putting soft music on and just sitting with or without conversation.  That’s about the extent of what intimacy will look like in our house for the time being. 

Where we are now is ahead of where we were a week ago.  We still have a long way to go – but we have to accept the small strides.  We wish it would go faster, we are not where we thought we would be by this point in time.  I guess we need to remember to be grateful that we are here at all because certainly, 2 ½ months ago we did not think we would have a chance of surviving this “c” word.  Yet, here we are – and we will come through this. 

The “C” Word – Day 75 Blood Transfusions

Today George spent the better part of the day at Good Samaritan Hospital – but this time as an outpatient.  Thanks to Sara who was able to block out her time to spend getting him checked in and settled in for the afternoon.

He had to be at registration around 11:30 in order to get his blood cross checked at noon.  While they had hoped to be able to start a little ahead of his 2PM transfusion, it took several nurses multiple attempts to find a good vein between his limbs being swollen still and his dehydration.  I think it sounded like 7 or 8 attempts were made to find the final location.  By the time they were able to start it was around 2:45.  Each bag takes about 2.5 hours so he was going to be there awhile. 

Sara helped order up some food for him and said he did quite well at eating.  I arrived around 3:45 to take over.  It was a long quiet afternoon and evening and we managed to get out at 8:30PM. 

I have to say that the outpatient treatment we received on the 5^th floor was far better than our two week stay.  The nurses stayed on top of the process and there was no wasted time waiting for things to be switched over. 

George was more alert when we were done this evening.  Were it not for the Benadryl they gave him at the onset he would probably be even more alert.  The anemia and vitamin deficiency has caused memory loss for George.  He has not been able to remember things well at all unless they are written down.  Fortunately this is “reversible memory loss” if we can get his body to function at a more even keel!  I don’t think I could have two people in this house with Alzheimer’s/Memory Loss!

I hope that a good night of rest will enable him to feel better and stronger tomorrow.  The magic mouthwash is enabling him to start eating more now.  That is a good sign and gives us hope that things will start turning a corner.

The “C” Word – Day 74 Update on oncology appointment

This morning we had our first oncology appointment since the surgery.  George has lost about 5 lbs. since we left the hospital (I deducted a few pounds for shoes since he did not wear them at the 7AM weigh in time at the hospital on the 15^th).  This is largely due to the fact that we are lucky if he eats 400 calories in a day due to the mouth sores.

We covered the questions we needed to ask the doctor and he subsequently ordered prescriptions for “magic mouthwash” containing lidocaine to ease the pain in George’s mouth and also has some antibiotic component I think.  He also order some meds to control what is viewed as herpes of the mouth.  Most of us may have a herpes bug running around in our bodies that remains inactive until something stresses the body out (i.e. surgery, chemo, etc) at which point it decides to rear its’ ugly head.  We hope that within a day or two that these will help ease the symptoms and within 4 or 5 days that it is nearly gone.  Keeping our fingers crossed.

We talked about the fact that this also could have been induced due to a vitamin deficiency given that whatever George does manage to drink has no nutritional value to it.  So he was told to take a multivitamin. 

Because some of George’s blood counts and other things are quite low, doctor ordered up to have 2 units of blood transfused tomorrow.  I called upon my Sara to see if she can drive him over there and get him situated allowing me time to spend with clients as Wednesdays are quite busy.  I will then go over mid-afternoon to check on him and pick him up.  Hopefully that will give him back some energy as well.  Once he starts being able to eat again I hope that his blood levels return to normal so we do not have to keep doing transfusions. 

Stitches are healing okay – even the ones that are somewhat “open” as they are clean drains at this point in time (thanks to advice from our neighbor about how to get them to stay that way). 

The only “down” side of the new meds is that they have to be taken 5 times a day at fairly equal times so I will need to wake George at 2AM to take one of them AND to drink a lot of water.  It is only for 5 days – so hopefully we will both be able to fall back quickly to sleep.  I am still sleeping on the airbed in the other bedroom as George is not able to sleep with his mouth closed since he cannot sleep on his side yet. . . and the CPAP air blowing out of his mouth can be quite annoying.  So I at least am getting decent sleep when given the chance.

Today was pretty non-productive at work since I did not even get in until nearly 11AM. My boss wanted to take me to lunch today so that was a nice long lunch break as well.  We both needed to reconnect as between my time out of the office which was on the heels of her being out of the office for a few weeks has meant that we have barely seen each other for well over a month.  It is so nice to work for understanding people who have become friends over the course of time.  Since we are a small business we all rely heavily on one another to run everything as smoothly as possible.  We are a great team of people.

Praying that between new mouth meds and medications to get rid of the virus, the transfusion, and good rest that things start proceeding forward at a better rate than they have been.  It would be nice for them all to come together so that George can feel human again and thus motivated to start moving around more and more.  

The “C” Word – Day 73 Getting things sorted out

I have struggled the past few days with my own emotions.  I feel as though they are all over the place but they keep ending up in the “down” position.  I have grown weary of trying to get things of nutritional value into George.  I know the canker sores hurt but I feel as though he still should try to get something besides popsicles and slurpees into his system because they won’t help him energy-wise.  I am tired of reminding him that he needs to move a little more.  I told him that he should be able to walk a full circle around the house.  He said “I think I can do it.”  My response, “Thinking and actually doing are two different things.  We can THINK we can do things all day long.” That applies to all thing things he needs to do – using the spirometer, eating healthy choices, walking, etc.  The only positive thing I saw today was that he and his mom walked around the patio for five or ten minutes.  Reminding and prodding throughout the day is exhausting especially when it just pisses George off.   Finally I just put my hands up in surrender and said “I give up!”  I told George that what happens next is up to him.  He knows what he needs to do.  I am not happy with “giving up”, in fact it made me miserable.  But I am it my wits end with the myriad of delays over the past few weeks.  Just as it looks we are moving forward there is another step backward.  It is like an endless roller coaster and all I want to do now is get off.

Last night as I was trying to sort out whatever it is that is bothering me.  It occurred to me that I miss my husband.  My husband has physically been here since early August but emotionally he has been totally absent.  From the two months where fear and anxiety enveloped his entire being to now being incapacitated by various traumas and complications it has been a daily struggle for me to try to keep upbeat, keep him focused, moving forward.  That, coupled with the lack of sleep for a few weeks has left me emotionally drained.  I am exhausted.

George is confused and scared by my 180 degree turn.  I just stopped “doing”.  I went back to work and when asked if I was looking forward to it, my response was “yes, at least there I feel like I am doing some good.”  At home, it does not feel like I am doing good.  At home it feels like I am spending my entire day watching George who is just sleeping, sitting, not talking.  It is lonely.  It has been lonely for a few months. 

My going back to work will force George to get up and do things for himself.  While it may be difficult, I know that he can at least get up and feed and water himself, get himself to the bathroom, etc.  Very basic stuff.  He does not need me to wait on him as much.  The only one that can motivate him at this point is him.  He needs to figure out how to make it all work.  It is time to “sink or swim” – and though I am fearful that he might sink first there is nothing else I can do.

I do not want to be a caregiver – a nurse… I want to be a wife.  And I don’t know how to get that back.  I am having a hard time finding some middle ground where I can exist peacefully. I want my husband back – the one that “sees hill, takes hill”, the one that likes to tinker in the garage, the one that enjoys sitting in the back yard watching the birds and the squirrels, the one that I can make laugh by my silliness.  Smiles are hard to come by.  Creativity has flown out the door.  I know I will not get these back anytime soon by sheer nature of this beast.  But I long for it – I crave it. 

I spoke with George about my concerns and feelings last night.  I am angry with myself for being frustrated and letting things get to me.  I had my pity party for a few hours last night.  I am tired of having weekly meltdowns.  That is just not in my nature as a rule. 

Today we see the oncologist for our first post-surgery follow up.  It is preceded by lab work so we will see how George is faring on his non-nutritional diet.  We will see if we can find out how to get relief from the mouth sores so he can eat again.  We will try to cross this hurdle and hope that it is the last big one we have to endure for a while.  Somehow we have to be able to find our new normal.  We aren’t there yet.  I pray it is just around the corner.