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