The C Word – A New Battle Day 18 - Ruminating on the battle

For brief periods of time George likes me to sit by his bedside and chat.  He wants me to tell stories - - but I am not a very good storyteller.  (In truth, he just wants to hear my voice.)  Sometimes he wants to chat about stuff that is running around in his head.  And there is a lot of chatter these days, for both of us.  Some of the thoughts or questions he has tell me he is fretting about what is to come – and he is wanting to make amends for things in the past.  I assume this is all very normal feelings for someone in this position.  That position being that we don’t know of any positive treatments for this cancer which leaves a feeling of hopelessness that is beyond imaginable.  I can sometimes feel my heart breaking in two.  I fight back tears and keep praying for a miracle or at least for George to feel well enough to lead as normal a life as is possible until it is his time to take leave. 

In the past two and a half weeks I have run the gamut of emotions.  Just prior to surgery I was hopeful yet a little reticent as well.  My gut was telling me things were different this time around.  And, on the day of surgery when the schedule of events did not happen like the last time, I knew that things were not right.  But still, I kept trying to push those feelings aside.  I kept telling myself that the scans did not show a lot of activity and according to the specialist in San Diego, persons having a second HIPEC had a chance of “cure” or at least a long period of remission (NED). 

And in the span of ten minutes as Dr. Bastidas told me “we couldn’t get it all”, life as I/we knew it has changed immediately and forever.  One short phrase. 

As hard as I try, I cannot get the look on Dr. B’s face out of my mind nor the words out of my brain.  In the days that have followed we have had challenge upon challenge.  During the few “good” moments I have hope that things will return to some kind of normalcy.  But most of the time I know things will not ever be normal for us again. 

After Mike died, I ran the gamut of emotions associated with grief.  At least most of them.  I remember the psychologist was waiting for me to experience anger.  Anger was never my “specialty” – you know the whole ‘slow to anger’ thing rang true for me.  Pissed off is one thing – anger is quite another, it is much stronger.  Sadness is the stronger emotion for me, perhaps frustration which can look like anger but not exactly the same thing.  Mike died shortly after our 20^th anniversary.  As my sibling celebrate 25, 30 or more years of marriage – as well as many of our closest friends – I remember feeling sad that I would never experience a marriage that long.  When George and I married I thought, there’s a chance that we could at least get to 20 and maybe 25 (he would be 84 at that point).  After his first surgery there was still the hope we could make it to 20 as that was only 7 more years.  And now… now I don’t know if we’ll make it to 16 years (14 is in just a few months).  And that is totally unfair!  So much for the theme of our wedding, “Grow Old Along With Me”. 

There’s a part of me that wonders what I’ve done in my life to have experienced such tragedies as this. I know that it has nothing to do with me.  But it does nag at me now and again.  Rather, I think God put these two men in my life for a reason.  Both had “baggage” from past history and I’d like to think that I helped soften them with the way I look at life, the easy going way I tend to take things.  The fact that I truly believe that everything happens for a reason, that God has a hand in all of our lives.  And perhaps that is what God has done – given both of these men someone to love them in spite of shortcomings (and vice versa, because I know I am flawed as well!).  In George’s case he put me there to help with his mom and now with him as he goes through some pretty horrific times.  I guess I should have been forewarned when George fell off his house after we’d only been dating six months and I helped care for him then.  I should have known that George needed a help-mate in his life, someone he could trust and depend on.   God put me in both of their lives for sure.  It was not coincidence or luck. 

We had an interesting chat with our nurse, Akash, a 26 year old young man.  He has been so kind to us the times we have had him assigned to George.  Last night he stopped by our room to change out the feeding tube solution.  We had found out earlier that he was single and looking to start dating now that he is settled into his job here in the bay area.  We said to him, “we need to find you a young lady”.  He said he planned on going to match.com after hearing our story the last time he was on our shift.  We asked him if he was a believer, a church goer.  He responded that he was and proceeded to tell us a little bit about his background.  We chatted about faith.  We talked about how God sends messages and messengers.  George expressed to him about how this disease has affected him physically and spiritually and how it has also affected me.  We told Akash about the fact that I have been a caregiver for not only George but also his mom.  Akash said that perhaps that was why I was “sent” to George, that God had that plan in mind.  Kind of interesting that I’d thought about this myself – and here was a “stranger” validating that God has plans and purposes for everyone.  And that no matter what, he said, George had a place waiting for him with Jesus.  It wasn’t those exact words, but it was along those lines.  I pray God bring a kind and wonderful woman into Akash’s life.  Such a sweet young man. 

This morning as I listen to “Here as in Heaven” and the lyrics stated that “the Spirit of the Lord is here, the evidence is all around”, I think about some of the nursing staff here that have ministered to us and with us in their care for George.  Akash is not the first one to “wax philosophical” with George during a stop into our room.  We are grateful for these tender believers, these kind spirits that have helped us during our time at the hospital.  We have been surrounded by some wonderful angels – nurses, nursing aides, doctors, and so on. 

Just before leaving last night as George and I had our nightly bedside chat before I left, we talked about what is in store.  I imagine we will have many more of these types of talks.  While I hate to be morbid and think the worst, we have some serious reconciliation to do in regards to the turn the cancer has taken.  We are in disbelief at the rapidity in which the recurrence took place and the fact that HIPEC will no longer be an option as the tumors are too numerous and too large for the chemo to work on.  Our future will be filled with more hospital stays and difficult decisions to make.

Last week I had to make a difficult decision to cut back my work hours, at least for the time being, because I need to take care of George.  I can’t guarantee when I can make it in to the office.  This caused me much angst as I truly love my job, my coworkers, etc.  It is probably one of the most ideal positions I have ever had in my entire life. It’s like to polar magnets pushing and pulling, wanting to do both but having to come to terms with the fact that I can’t do it all, at least for right now. I feel really, really bad because our staffing has dwindled quite a bit over the past year and a half to the point we are a skeletal crew – and I know how much my not being there will affect things.  My heart aches that I had to come to the realization I cannot go to work AND be available to help George.  They have agreed to let me work remotely as much as I can – and for the most part much of the work I do can be done remotely.  But my physical presence to jump in and help is as much a part of the job as well.  Hopefully as things settle into a routine, and once George is off the antibiotic IV and the feeding tube I can resume putting in some hours at work again.  Work has always been my “respite” from the rest of my life.  When things are difficult at home because of the stresses, I go to work and feel as though I am accomplishing something and making a difference to others – and that regenerates my soul.  I truly have missed that these past weeks.

I also know that my days with George are numbered.  We don’t know how many.  A few years at the very least is what we hope for.  We also know that there are bound to be complications that will upset the apple cart.  We know that there are likely to be more hospitalizations given that George has very little bowel left and could get obstructions given that there are tumors still on what is there.  We are acutely aware that additional surgeries can result in less than stellar results and quality of life.  I feel that I should be spending as much time with George as I can – while still balancing my personal space and needs to get out and have fun sometimes.  Hoping for more fun times with George, too!  And wanting the flexibility to just “get up and go” when the opportunity presents itself.

It’s been a rather surreal few weeks.  A little over a month ago we were planning on spending time going away on weekends and just enjoying some down time now that Mom has been moved to a care facility.  In the past few weeks we have become so disconnected from whatever is taking place in the world around us.  I at times feel so cut off from the world (that can be a good thing, because I am not hearing about all the crap going on).  At times I get lonely because I just sit for hours and hours with George who sleeps a lot.  Yet when he is awake he has me jumping up and down as I adjust pillows, blankets, assist in and out of bed for bathroom trips or to sit in a chair for a spell.  I can’t wait until he is home so at least I can get a few things done around the house while he sleeps - - or take a nap in the comfort of my own home.  I awaken early some mornings and feel the terror inside me, the fear of the unknown.  When it is time to get up in the morning I am still so tired.  Though I am getting the same amount of sleep I normally get, it does not feel as though it is enough.  At least when we are home there won’t be the interruptions of vital signs, room cleanings, extra meds, etc.  And I will be able to go outside and breathe fresh air, see and feel the sunshine that might make me feel a little more human and a little less isolated. 

On the flip side – at home I do not have nurses or aides at beck and call.  I will need to learn how to hook George up to a feeding tube at night and administer IV meds a few times a day as well.  A nurse will come to show me how and, I assume, will stop in daily to check on things but I don’t know for sure. That will be the routine for at least a few weeks.   I once again will be responsible for ensuring that George gets all his medications on time throughout the day. (I have learned that doing this on his own, especially in the weeks post-surgery, is hit or miss as he would often forget!)   I already have the baby monitor set up so I can be in other parts of the house and still know when George needs help. 

Understandably this is just the beginning of this newest battle and we don’t know where it is going yet. Take each day, each moment as it comes.  I will cling tight to my faith.  I will lean on friends and family for mental, spiritual and physical support.  A note from Sara at home tells me to “BREATHE”.  I will need to be reminded of that.  … a lot … Thank you, Sara, for the visual reminder!