The C Word – The Weather of Our Lives

Back East (well, in many places) there is a saying, “If you don’t like the weather, just wait awhile.  It will change.”

That’s sort of true in our lives as well.  If you don’t like what’s going on, just wait awhile.  It will change.

But, just like the weather, the change isn’t always what we want it to be.  And so we wait again – and again – ever hopeful that the winds will turn course and get on the right path again.

I feel like that is us right now.  We keep waiting for the journey to make a turn and find a place of peace.  Sometimes we think it’s right there on the horizon.  And then another storm hits and sets us off course again.

It was just last Sunday when I blogged about our/my new normal. George was home and on IV nutrition and I was trying to adjust to all the changes that came with that.  I was doing pretty good as I streamlined a bit during the week. 

On Thursday we had an appointment with Dr. Bastidas and after that George wanted to go to his bi-weekly support group at Cancer CAREPoint.  Our appointment with Dr. B was fairly quick, in part because we wanted to get to the meeting and we were running behind schedule.  George was feeling okay – not great, but okay.  He’d been saying all week that he just didn’t feel so great. 

He went to his support group and I sat in the lobby in the event he couldn’t make it through the whole thing.  It was our first outing since coming out of the hospital and George had not left the house (or the hospital) in over two weeks.  By the time the meeting was over, he came out and said he was feeling really bad.  We got to the car and I vented his Gtube to see if that would alleviate his nausea.  We keep a “barf bag” in our cars and I got that out as well.  I had one stop to make on the way home and the whole time George was dry heaving. 

He wanted pain medication as soon as we walked through the door – and I have to clamp his tube in order for him to properly digest that.  I unclamped as soon as I could as he was still not doing well.  This went on all afternoon.  By about 6:30 I decided it was time to head to the ER as pain and nausea meds were not working at all.

Thus, 6 days after discharge we were back in the ER.  There wasn’t a full lobby when we arrived so I thought that was a good sign.  What I didn’t know, is that there were people in beds in the ER waiting for rooms to open up. It took 18 hours before a bed for George opened up.

The tests showed he had elevated potassium and pancreatitis.  They took him off the TPN and started to push a lot of fluids to bring those numbers down.  I took a break at 2:30 AM after he had been officially “admitted” but had been told it would be past 9AM before a room would become available.  I had a fitful sleep and at 6:30 got up and ready to go back to the hospital, bringing what George would need for a few days stay. 

Keith came to give me a break for a few hours so I could go play with a pressure washer at Sara’s as well as do some bush trimming.  That was such a good break – to be outside and making things look so much better.

When I got back to the ER, we knew he would be transferred to a room soon – and at 2:30 it finally happened!  We ended up in the North Tower in the surgical post op rooms where we have spent PLENTY of time before.  Big rooms.  Private.  With a pull out bed.

George and I promptly fell asleep – he in bed and me in the large chair with pillows and a blanket.  I got up at 5:30 and headed home for a few hours to sit, relax, gather my belongings, etc.  When I returned, he was still sleeping and hasn’t felt like chatting at all.  I hooked up his CPAP and settled him in bed and me in my bed where I write this.

My guess is he will be here for at least three days, probably more.  The TPN he was on caused the pancreatitis and high potassium levels… so now we have to figure out what the new formula should be. 

More changes – more adaptations – more complications.  This is his fifth (?) hospitalization since December 8^th – and does not include at least 3 visits to Dr. Bastidas to fix things in regards to his fistula/abscess drain.    

It seems like the wind keeps blowing and changing direction – but we never are quite able to get ourselves on track.  At least not the track we would like.  I’m not sure how much more of this George can handle as each direction makes him more tired than the last, more vulnerable, and more emotionally distressed.  Each direction has me scrambling to adapt and change my course of action, trying to keep pace and attempt to stay one step ahead, trying to figure out what the next step might be.   

I keep praying for the strength to keep moving forward, the courage to speak truth to him, to prepare him for the days ahead. 

Which way will the wind blow tomorrow and the day or week after that. Moment by moment, breath by breath.  Constant shifts – until the day when the wind dies down and peace is found. 

The C Word – Yet Another New Normal

This past week has been a whirlwind of change for us.

The PEG line (G-tube or gastric tube) provided much relief from the irritations caused by the Ng tube.  The tradeoff is that the opening made in his belly causes some discomfort – but minor in comparison. 

He wavered for the better part of the week regarding whether or not to go ahead with surgery.  In the end, he concurs that the negative variables outweigh the positive.  He’ll still ask some questions at Dr. B’s office on Thursday.  But he is so weak right now I can’t fathom that even Dr. B. would think it a good idea. 

On Friday he was finally discharged.  The hospital lined up Pathways Home and Health Care and Silicon Valley Pharmacy to handle the TPN care.  Friday was a total day of non-stop activity for me.  From talking to the pharmacy, running last minute errands, lining up home appointments for intake and delivery of TPN, etc., I don’t think I sat still (let alone sat down) from 11:30AM until after 8PM.

As soon as George was discharged (3:30PM), I took him home and got him settled.  Then I ran to the pharmacy for a prescription and a glucose monitor and supplies.  I got home and woke George up to take a shower before he got hooked up.  The nurse arrived right after that (5:15PM).  It took 2 ½ hours to go through the intake work and then set up and hook up the TPN.  George pretty much slept through all of that and then wanted to go to bed as soon as she left.

After getting him to bed, I went back to living room to try to get some things cleaned up and organized.  I sent an email out to a bunch of folk and tried to set up a visiting schedule on our Caring Bridge site.  It was 11PM by the time my head hit a pillow.  George woke up twice to go to the bathroom which requires assistance.

The TPN is run on a pump so he can go anywhere with it.  The downside is that the between the battery and the amount of TPN fluid, the backpack that holds everything is extremely heavy.  Too heavy for George to carry.  On top of that, when he has the G-tube drain connected, that can add additional weight to carry around. 

One of the hardest parts for me is to try to figure out some sort of routine that can be maintained and allow me some time to just “be” or to get back to my craft room.  I am still recovering from a week at the hospital with him so am doing this in a slow fashion.  But I am not known for wanting to wait – I would like it all to fall in place easy.  Each day I think I am making progress in the routine so I can have some “sit” periods. 

George has been so weak.  After a week of laying in bed (with the exception of two walks around the ward), his muscle tone has decreased.  The first two days home he kept bumping into walls.

The other hard part is seeing George like this.  Emotionally he is not doing well at all.  He views this as his death sentence.  He goes to dark places.  And he is emotionally wrought with guilt over all the work I must do for him right now.  He is exhausted and sleeps a lot.  So many things he is dealing with right now.

I am helpless to change anything.  My job is to nurture as best I can.  To help him try to deal with the myriad of thoughts and emotions.  To just allow him to vent without trying to fix.  At times when I am exhausted, this can be difficult. 

I’m battling either allergies or a cold right now – and that doesn’t help.  I would love to crawl into bed at 7PM – but I still have things to do for him until 8:30 or 9:00PM.  Sometimes it is hard to let my brain find a resting place. 

It will happen.  It just takes time.  There’s a whole lot of newness to caring for George with more duties than I have ever had before.  With our luck, as soon as I have a routine going, something will happen and I’ll have to adapt yet again. 

I’m hoping that things will settle in and he will feel like going out for a ride or getting a drink somewhere.  Although he was on full liquids at the hospital, the home notes say clear liquids.  I’m hoping he can go back to full liquids as that means he can have certain foods pureed so he feels as though he is eating something.  He needs to have something to look forward to.

A lot of adjustments in a not-so-good looking place in our lives.  I pray every day to just get through the day.  That’s about all the energy I have right now.  It takes a lot of energy to find a new normal.

If anyone would like to visit, please call first – or sign up for a slot on Caring Bridge. (https://www.caringbridge.org/public/angelsforgeorge).

I also need some help in order for me to get out of the house.  Since George cannot carry the backpack containing his TPN, someone needs to follow him to the bathroom and then go back to retrieve him from the bathroom. I’ve got a few times already posted and will add as I know schedule changes, etc. 

Please continue to keep us in your prayers.  George for comfort and healing.  Me for strength and good health. 

The C Word – Moment by moment

These past few days have been full of changes, full of possible scenarios, full of having to think about decisions about what is next. 

It has now been nearly four days since the obstruction occurred.  While the drainage coming out has slowed down a little bit, it is still coming. 

The Ng tube has caused George much distress.  It has been irritating his throat to the point that he cannot talk right now.  His voice is hoarse.  Today Dr. Bastidas put in a PEG line (gastric tube) so that the Ng tube can be removed.  It will probably take a few days for George to start feeling better.  An advantage is that I can now bring in George’s CPAP machine so he can sleep better.

But we have decisions looming over us if the obstruction does not clear.  Hard decisions.  All have their own repercussions. 

1.       Go home with TPN and G-Tube. 

a.      That said, then who follows care:  Palliative or Hospice

2.      Go home with nothing and hospice

3.      Surgery to try to remove obstruction

a.      Complications/scenarios include:
Not able to clear blockage

b.      Resection could be difficult

c.       Getting through the tumors may present issues

d.      Depending on where blockage is, could get some relief and be able to eat foods or could still need TPN

e.      Possible ostomy bag

George loves Dr. Bastidas so much that he will nearly always choose surgery as his first option.  In fact, George said to me yesterday, “I have faith in Dr. Bastidas and in God.”  Subconsciously, he puts Dr. Bastidas ahead of God on some level. 

Dr. Bastidas said he cannot tell George which option he would choose.  He hesitated to sway George one way or another.  It is a decision George has to make. I believe George would do whatever Dr. Bastidas says, even if Dr B. said that going home with TPN & G-tube is a better choice.  He respects his decision that much.  But Dr. B wouldn’t come out and say anything on that.  Professionally, he probably can’t do that.

It is clear that George doesn’t feel well at all.  He may not feel well after surgery.  He would likely be able to live less than he already does. This cancer is taking him bit by bit by bit.  Whatever decision George goes with, the inevitable is going to happen. 

I struggle. I don’t want him to continue to suffer.  He has mental anguish right now.  My concern is that if he was fearful about eating before getting this obstruction, he will be even more fearful if he is able to eat again.  How is that a benefit?  Compounded fear.  Every procedure, every surgery compounds already growing fear. 

There are moments when I watch him lying in bed, totally out of it, drifting in and out of sleep – and I cry.  This is not what I want for him. This is not life. 

We are living one moment to the next.  Holding our breath.  Trying to anticipate what is next.  Will the obstruction clear?  If it does, then what?  If it doesn’t, then what?  If he has surgery, what will the benefit be, if any? 

I can hardly go beyond this moment right now.  I pray, again, for the answer to become clear.  I pray for peace of mind for George, for me, for the family. 

I do know that when I have battles with my thoughts and emotions where George is concerned, that God has delivered messages to me in a myriad of ways.  God already knows the answers but we have to be open to listen to them. 

I had an opportunity to talk to the doctor this afternoon.  He and I will have frank conversations.  He trusts me and I trust him.  I asked him what was his gut feeling about all of this.  He shrugged.  I reiterated the conversation he had with George yesterday.  I was feeling out what I believed was on his mind.  I told him that George is swaying towards surgery but that I wasn’t entirely sure if that was the answer because there are so many variables.  It might help.  Dr. Bastidas then said, “he could also come out worse than he is going in”.  The look on his face and the tone of his voice and the way he spoke to me, I believe that I got the answer I was looking for.  The one I was praying for. 

It may not be the answer we were hoping for, praying for – but it was definitely spoken from God through someone else. 

Moment by moment – that’s all I can ask for right now.  God is standing beside us, Jesus is walking with us.  Breathe.  Just breathe. 

This is a hymn I found:

Moment By Moment

1	Dying with Jesus, by death reckoned mine; Living with Jesus a new life divine; Looking to Jesus till glory doth shine, Moment by moment, O Lord, I am Thine.
	Moment by moment I’m kept in His love, Moment by moment I’ve life from above; Looking to Jesus till glory doth shine;   Moment by moment, O Lord, I am Thine.
2	Never a battle with wrong for the right, Never a contest that He doth not fight; Lifting above us His banner so white; Moment by moment I’m kept in His sight.
3	Never a trial that He is not there, Never a burden that He doth not bear; Never a sorrow that He doth not share, Moment by moment, I’m under His care.
4	Never a heartache, and never a groan, Never a teardrop, and never a moan; Never a danger but there on the throne Moment by moment He thinks of His own.
5	Never a weakness that He doth not feel, Never a sickness that He cannot heal; Moment by moment, in woe or in weal, Jesus, my Savior, abides with me still.

The C Word – Transitions

We spend our entire lives making transitions, don’t we?  From infant to toddler, toddler to preschool, preschool to elementary school, child to teenager, teenager to adult. 

We transition from one grade to the next, hopefully learning lessons about life along the way.

We also transition from one location to another, perhaps because of work or family, or the need to get away from the city or back to the city. 

Job transitions, maybe as we gain more experience or find better jobs suitable to our needs at a given moment. 

So many transitions, day in and day out.

No matter how many transitions we have grown accustomed to throughout our lifetime, nothing really prepares us for the transition from life to death.  For most of us, this is formidable.  It is huge.  So many questions and fears invade the crevices of our brain.  Since there aren’t really many people who have come back from death, there are so many unanswered questions.  The questions are not always so much about the “after” of death, but the process of dying.  Will it hurt?  Will I know when it happens?

There are other real questions and fears.  Such as, “will my loved one be okay without me”?  Fear that their loved one may forget about them.  Not wanting them to mourn and miss you – yet wanting them to mourn and miss you in the same breath. 

Utter terror of the process.  Afraid there will be a lot of pain.  Not yet wanting to leave.  Fear.  Sadness.  Panic. Terror.  So many mixed-up emotions.

I feel we are about to move into this transitional phase.  This week George had his first bowel obstruction that did not clear on its own within 24 hours.  Most have resolved themselves in fairly short order.  Right now, there is an obstruction that doesn’t appear to be clearing.  This is likely due to tumors squeezing on his intestinal walls not allowing passage of food. 

He had his first Ng tube inserted last night in the emergency room.  Over the past 24 hours, a lot of fluids are being drawn out of his belly in a myriad of colors.  They observe the output to determine whether or not the obstruction seems to be clearing.  The less output, the better.  Unfortunately, things have not slowed down at all which means there is still a blockage.

In the next 24-48 hours, the doctors will watch to see if there is any change and then determine what the next step is in regards to care. He obviously will need some nutrition and the only way to get that if he can’t eat the calories is to administer TPN (IV Nutrition).  This completely bypasses the stomach as it is absorbed through the blood stream.  The next issue becomes “for how long”.  And yet another issue is putting in a Gastric tube (G-Tube) to allow the belly to continue to drain.  (Our “fun fact” for the day: We learned that the stomach will still produce bile/fluid whether or not you eat or drink.  It will produce approximately one liter a day.)

The end appears to be staring us in the face, taunting us.  It is daring us to give in.  Yet we still continue to fight, literally, for every possible breath, every possible moment to stay here. 

I am reminded of a church friend who passed a little over a year ago.  We had been told that Mary had yet another cancer (I think she had 5 different ones) and she was in the hospital.  We arrived expecting to find her weak, pale, not doing well.  Imagine our surprise when we entered the room and she was beaming from ear to ear.  It was the same Mary we had grown to love, the one who could talk your ear off, had praise for everyone, full of life and zest.  She had cookies and pastries for her hospital guests.  She told us that she’d been working on her memorial service for quite some time.  She had chosen where it would be (had to be a big church because she expected a lot of people).  She had chosen her music (as a pianist and church organist, I imagine it was hard for her to whittle down her favorites to a choice few).  She had worked as an organist or teacher in a myriad of churches so she had passages and roles for every pastor, preacher or other church leader with whom she had worked over the years.  Moreover, she was so joyful.  She told us she was so excited to meet Jesus and go to Heaven.  She couldn’t imagine a more beautiful place.  She had no regrets.  No doubts.  Just pure Trust in our One and Only Sovereign God. 

I have to admit, I am envious of her attitude.  She seemed to have it all figured out.  She was the most honest, real person I had met in a long time.  She was ready.  I can imagine all the hoopla in Heaven when she arrived.

Shouldn’t that be our goal.  She made being at peace with the Maker look so easy.  It should be.  But I think that so many of us get hung up on other things that it makes it very difficult to be at peace, to come to terms with our own mortality.  We live such involved humanly lives that we don’t want to give that up.  We try to bargain, to deny, to put off the inevitable.  We don’t want to say goodbye.  We are anxious about our loved ones and worry how they’ll be when we are gone.  We don’t want to miss our children or grandchildren’s milestone events – birthdays, graduations, weddings, anniversaries. 

Yet every single one of us will one day make this transition from human life to human death.  Every single one of us.  There are no exceptions.  Most of us do not want to think about it, do not want to consider it, do not want to leave our loved ones.  We fight with all of our might to exist for as long as we can – sometimes even when the odds are stacked against us.

As Christians, why isn’t our eye on the “prize” – a life of eternity in the hereafter?  A life full of goodness and hope, light and joy, of existence in the presence of God and of Jesus? 

Life as we know it will come to an end.  For some it will be sooner than others.  In our house, it is far more likely that George is transitioning sooner than later.  There is nothing we can do to stop God from reaching down his hand and taking George home… when it is his time.  Nor is there anything we can do for anyone – for when God takes someone home, it is in his time.  There is no obvious rhyme or reason (at least not always) – it just IS. 

As we prepare to transition to whatever is next for us, we must deal with all of the emotions that go along with it.  My prayer is that we can do it with as much grace as we can muster up. 

The C Word - Give Me A Sign

In 2019 I am determined to ensure that I have some quality “me” time.  My sister had spoken of “The Five Minute Journal” and explained how it worked.  It intrigued me.  Heck, I can find five minutes a day!  I ordered a copy for myself as well as for my three daughters (as Christmas gifts).  I started using this journal on Christmas Day.  I have successfully managed to write in it every day since then.

Since I now have my own bed near the master bedroom, I have a small light and a place to put my journals, etc.  While I know it is not good to keep your phone near your bed for a myriad of reasons, my phone has the app Calm on it.  I use Calm music meditation at night.  First thing in the morning I do a daily calm meditation.  Then I write in my Five Minute Journal.

The Five Minute Journal is broken down into sections.  First, write up to three things you are grateful for.  Maybe that the sun is up or it’s raining outside, the fact that you woke up happy, or had a good night of sleep.  You can be grateful for your husband, kids or other family and friends and relationships.  Big or little. Find things to be grateful for.

Next you write up to three things that would make today great.  For this I spend a few minutes to think of what might be on my schedule for the day and come up with a goal or two that would be good.  You could call this section “intentions”.  I find that when I fill this section in, I think about it throughout the day and try to fulfill my intentions if I can.  These have to be things you have some control over, not things like, a sunny day or the boss to be in a good mood.

Next you write an affirmation phrase.  For me, I am trying to be more mindful about how and what I eat so most of my affirmations for “I am…” have related to that this month.  I even did an online support that my niece held for a week titled: “Ditch the Diet – learning how to be an intuitive eater”.  I found some helpful suggestions there.

Once I’ve completed that journal, I move on to a “Hello God, It’s Me – a 365 Daily Devotional journal” that my daughter gave me for Christmas.  It has a bible verse and then some written paragraphs pertaining to that verse.  And a short prayer.  Some days I try to write something pertinent to the topic and other days I write what is on my mind.

Since I write in my five-minute journal first, I don’t know what the devotional one will say that day.  So when the two of them actually cross over the same topic, I pay attention.

Yesterday I wrote that “I am grateful for… (1) knowing I have the strength to deal with problem, (2) knowing what George needs and (3) Dr. Bastidas (our wonderful surgeon).”

“What would make today great?  (1) Being able to decide what to do about George’s abscess issue.  (2) seeing the PMP group but OK if that doesn’t happen and (3) seeing Becke, Addy & Bella. 

Then, the Bible verse from the devotional journal was from Psalm 22:9-11 “Yet you brought me out of the womb; you made me trust in you, even at my mother’s breast.  From birth I was cast on you; from my mother’s womb you have been my God.  Do not be far from me, for trouble is near and there is no one to help.” The story to go along with it states: “The Thursday before Easter in 2007, a tragic car accident took the life of a high school senior, Chris.  A girl who barely knew him was shaken.  A young Christ-follower, she’d distanced herself from God.  As her shock from Chris’s death changed into fear and tears, she returned, weeping, to the Lord’s arms.  She took comfort in His Word, explored it more , and clung to its truth.  She trusted in God’s strength, found peace in knowing that He was in control, and drew closer to Him than she ever had been before.  The direction of her life changed.  Without Chris’s death, she might have remained distant from God for much longer.  Her love for God and others would have grown more stagnant.  The tragedy served as a reminder to her of what was really important. 

Although most of us want a life filled only with joy and blessings, God knows that sometimes we must endure difficult circumstances and tragedies in order for Him to build the strength of character He wants in us.  Unexpected tragedies reveal what is most important in our lives – and they often lead us to the arms of the One who is the Source of life.” 

The prayer it says is “Hello God… it’s me.  Increase my faith in Your goodness, no matter what my day looks like.”  *1

My prayer for yesterday was:  Dear God: Today I ask for Your peace to surround me and George.  I need the presence of mind to decide what to do about the tumor(?) that appears to be surfacing outside his abdomen.  George looks to me to make these sorts of decisions.  Make it clear to me what action I need to take.  “Give me a sign” as they say.  Give us both the strength we need to get through these tough times. 

After I did my two journals and then some brain training, I got up and started my day as I do every day. 
I did manage to go to a luncheon for PMP survivors that I’d organized although George was not up to going.  I managed to get home with enough time to spare to see Becke and the twins as they were at Chloe’s birthday party.  The only thing that wasn’t yet clear was what to do about George’s abscess issues. 

Then, around 5PM George state he was having a hot flash as he pushed off the warm blanket which he is covered in all day long as he is always cold.  I wasn’t sure what to make of it at first but then something told me to take his temperature.  He had a fever over 100 degrees.  That’s not good.  We waited another 20 minutes and took it again – no change.  I told George we needed to go to the ER because his immune system doesn’t work so great.  He really wanted to wait until the next morning or until Tuesday and then go see Dr. Bastidas.  I told him that I didn’t think we should wait.  Something was going on.  He finally agreed to go but wasn’t thrilled with my decision.  (In the meantime, I had texted Dr. B to let him know what was going on.  He didn’t answer right away but had someone message us while he was in the OR that going to hospital would be a good idea. By that time we were already at the hospital.

And, as usual, it was a good decision to make.  The fluid and gases in his abscess region could not adequately release with the small drain he’s had in since December.  He needed to get the area drained and a new solution needed to be found for the abscess area. 

He didn’t get a room until nearly 12:30 and it was 1:00AM before I headed home to rest.  As I lay in bed trying to wind down, I thought back on my day and realized that the fever was the “sign” that I’d asked for to clearly indicate what needed to be done.  If it had not been for that, I’m not sure we would have known the severity of the issue. 

I went to sleep thanking God for sending His sure sign, the sign I’d asked for.  He doesn’t always send such clear signs when we ask.  Sometimes we have to listen very carefully as the answer may be whispered in the breeze.  I’m grateful that he sent a strong signal in this instance.

All the things I was grateful for and all the things that would make the day amazing along with the prayer from my devotional journal came together as one and, though the day was incredibly long, the end result was that it all came together for the good of everyone. 

This morning I did a meditation on relieving anxiety.  Trying to be in the moment and not predict outcomes but to be present with what is happening in the here and now. 

In my journal I wrote that I am glad that I took George to the ER last night so we can take care of the problem.  What would make today great was to write about “give me a sign” for my blog. (check). 

I wrote to try not to stress eat (check).  I packed myself a random snack made with sweet, salty, crunchy things (dried edamame beans, peanuts, cheerios and corn pops).  That satisfied the “in between” time from breakfast to lunch and the small salad I had for lunch was perfect.

I wrote about talking to George about his reticence to go to the hospital when things are obviously (to me) needing to be taken care of.  (check)  On the way to the hospital I prayed for the right words to say that would enable him to see my point of view and to help him see that he needs to trust my gut instinct to know when it is time to seek help and not “wait until the weekend is over” or whatever a later time or date might be.  Sometimes that waiting, especially for him, can be dangerous. 

As I look back at my devotional journal for today, the topic was “unlimited knowledge”.  The verse from Psalm 139:1-4 says “O Lord, you have examined my heart and know everything about me.  You know when I sit down or stand up.  You know my thoughts even when I’m far away.  You see me when I travel and when I rest at home.  You know everything I do.  You know what I am going to say even before I say it, Lord.”*1 (I had underscored that last sentence.)

I started the conversation with him (forgetting about the bible verse by then) and just prayed for the right words to say.  I explained some of my thoughts and talked about the fact that I have learned to trust my gut instincts, my intuition, especially when it is something that is important.  I needed him to trust himself.  I said, “You’re smart.  You know when something isn’t right.” 

The thing that hit home for him was when I said to him, “You know how you sometimes will ask a doctor ‘if it was your child/mom/loved one what would you do in this situation’?”  I told him that it might help him better if, when something is going wrong or when I point out that something needs to be handled in the ER or doctor’s office, or when he knows something isn’t right with his body that he needs to think, “If this was happening to my child or grandchild, what would my response be?”  It puts a whole new light, a whole new perspective on things because his advice to them would most likely be “better be safe than sorry”, “you need to get that checked out before it gets worse”, etc.  Thank you God for putting those words in my mouth as that was not something I thought of until the moment it happened. 

As with every step along this journey, there are more things for me to take care of, new things to learn.  He is excited that he gets to go home today.  For me, instead of a drain I have to pack the area. I can do that.  (I also believe that Dr. Bastidas trusts my judgement and capabilities, so we are able to get out of the hospital sooner than some other people.) It’s another hiccough, another glitch in our journey.  But not one we cannot get through.  With God on our side, we continue to walk this journey, fight this fight, until God deems it time to go home.

P.S.  Dear God – I still insist that no matter what new ‘nursing’ skills you are making me learn, I do NOT want to go become a nurse in my next phase of life.  I have no doubt, however, that what I am learning on this journey will be used in some incredible way somewhere down the road.  You are just full of surprises!

*1  Hello God… It’s Me.  A 365 Day Devotional Journal.  Ellie Claire; Journal edition (January 1, 2016)

The C Word - Another Year Gone By

The C Word – Another Year Gone By

As children, do you remember the years being incredibly long.  When school started in September, June felt like a lifetime away. In January, the recent Christmas already a memory and many long months until the next one.  As the years moved on, the years seemed shorter.  In college, just when you started it was time for midterm exams and then finals. 

Now, as we sink farther into our senior years, the years go by at the speed of light.  Or so it sometimes seems.  When things are going well, we wish time would slow down – and yet, when things are not so well we wish time would speed up. 

These past four and a half years have been one long roller coaster of ups and downs, highs and lows, a never-ending cycle of changing and adapting to life with cancer.  This past year is no exception.  

It started off on a rather even keel, the first few months just plodding along.  We forget that we need to pay attention to when time is good, because bad can quickly overpower us.  As we moved into and out of spring, with a CT scan showing more visible movement of the cancer, we found ourselves investigating standard chemotherapy for the first time.  I still remember when we first met Dr. Bastidas back in 2014, the first doctor to give us any hope.  As we prepared for the cytoreductive surgery with HIPEC (Heated Chemo), George told Dr. Bastidas to do everything he could with the cancer – “yank it out, cut it out, suck it out, crush it, destroy it.  Let’s just do it!”   That decision seemed easier than this one – because it held out more hope.

The thought of standard chemo was daunting.  Scary.  I wanted time to stand still – George was ready to leap forward.  Before we knew it, “chemo day” arrived.  Although it was a long day, it felt like it moved quickly.  Little did we know that a few days later we would eat our words – as the suffering began and the days felt long and unending. During the first five days of chemo, I had to stick to a strict schedule of medications, getting up in the middle of the night to keep nausea under control. Those two months (4 treatments) were the longest, most miserable days of George’s life.  For me, they were long quiet days while George slept.  Sometimes days would go by without any real conversation for me.  If I didn’t have my craft/sewing projects to keep me busy, I would have been miserable. 

When we made the decision to stop chemo four months earlier than scheduled, it was a relief yet somewhat frightening.  “Quality versus quantity” of life became our goal.  Yet my definition of quality is different than George’s – and I had to learn to live with that.  Quality does not mean normal – it does not mean fun – it does not mean that we achieve a sense of fulfillment and satisfaction.  Most days, quality just means making it through the day without an emergency. 

While we try to get ‘out of routine’ once in a while, as time marches on this becomes more and more elusive.  George can be doing great one moment, and crash in the very next one.  While most of the time I can deal with all of this, there are moments when I just wish for the old “normal” – for the days when we could just get up and go out and have some fun – go for a drive, a picnic, a vacation.  Of course, even those were tempered long before cancer came into our house as we had the responsibility to care for George’s mom.  It seems like forever ago when George and I dated and went and did things – the beach, a concert, a last minute picnic, a weekend away.  Forever ago….

Nowadays, “getting out” for me is a trip to the grocery store, an occasional movie date with a friend, a few hours volunteering at my old place of employment. Nothing more than a few hours at a time.  Some days, most days, this is enough.  I keep telling myself this won’t be forever – and I dream about the day when I can move about more freely.   I think if I couldn’t dream about what lies ahead – what lies beyond my life as a caregiver – I would go crazy.  Dreaming gives me something to look forward to.  Some may think it cruel for me to be planning for life “after” – especially since we don’t know when that time will come.  Those who know me, however, totally understand.  They understand that between caring for George’s mom and then caring for him, I have been tethered to my home for 13 years, held back from making any long-term plans – for that matter, even short-term plans.  For any plans at all could be thwarted by an emergency or other health issues.  We live in a constant state of “what if”. 

The last few months of 2018 have proved especially tenuous as George has issues far more frequently than he did before.  We seem to be going through a series of two week roller coasters, up and down and up and down again.  There are days we want to shout “Let me off this roller coaster!” 

Yet, as we finish out this final day of 2018, we are so thankful for one of the best Christmas celebrations we’ve ever had.  Even though we had to move the date and celebrate a few days prior to the 25^th, we were able to have a fun day with the family – the kids and grandkids.  I decided that rather than cook a meal (which would have taken time away from just ‘being’ with everyone), that I would take everyone out for dinner.  That turned out to be a great decision.  Not only were we able to share a laughter filled afternoon of exchanging gifts and being in one another’s company, everyone got to eat what they wanted (and even take things home).  I will always remember our Christmas this year.  I cherish the fact that George had a good day, that he enjoyed and took part in conversations, that he was well enough to go out for dinner.  I cherish the fact that our kids and grandkids were here with us, and enjoyed the friendly bantering that took place in our living room.  That was all heavenly to me!

Another year has gone by.  No matter all the crazy ups and downs, all the good and bad and ugly, all the love and laughter and tears… We made it through the year!

As we wrap up another year, we say “Amen”.  Four and a half years ago we never dreamed we would make it this far.  We don’t know if we’ll make it to another Christmas or not.  Only our God knows our days. Every day is a gift.  And we do the best we can with each day He gives us. 

The C Word – The Toll of Cancer

These past few months have been sombering.  The shadows creep in and out day after day.  No matter what we try to do, clouds hover close by.  We are way past the bargaining stage of grief.  Long gone are the “if I survive this I will do xyz”.  We aren’t in denial of what is happening though we would love to be able to do this. 

Our initial shock of diagnosis has morphed into a weary sense of survival.  Of living in a moment in time.  Of trying to make the best of a bad situation.  Four years – four long years of battling this enemy.  We tire of the question “how are you?”.  The response will always depend on who we are talking to.  For some it is “fine”, for others it is “surviving”, and yet for others it may be “just so so” or “not great”.  A sympathetic pat on the shoulder, an empathetic hug, a loss for words. 

This past year has taken its’ toll on us physically and emotionally.  Unable to make plans and, if we take a risk to make a plan to do something in the back of our mind is “what if”.  What if George isn’t feeling well?  What if he ends up in the hospital?  What if, what if….?  Always a backup plan in the backs of our minds.  We sometimes have to respond with – “I won’t know until the actual day of the event… we are a definite maybe.” 

In the past few weeks George has had a couple of bouts of blockages – temporary but painful.  So far we have been able to manage them at home – rest, fluids, sleep and sometimes medication.  The mere fact that there have been two within a two week period is a bit disconcerting.  The mere fact that both occurred when there were celebrations planned made it worse.  The celebrations went on – but without George being able to participate in any real way.

I believe it is because of this and the fact that no holidays or celebrations went off without a hitch that I became a bit wary and weary of Christmas this year.  My heart doesn’t feel like celebrating too much.  I worry that it will be yet another holiday that is tempered by George not feeling well. 

George and I had a discussion about this.  Would it be possible to ask the family to make a change in how we celebrate?  Can we ask them to celebrate with us on a date other than December 25^th?  That way they have a better chance of having fun than if we did the same routine we’ve been doing for 15 years.  We need to do this.  We need to take the focus off of us and onto our children and grandchildren.

I sent a message to the three girls asking them to consider the plan of having our family celebration before the holiday and explained to them why.  There are other advantages to doing this – their kids can stay home and enjoy their new gifts without uprooting quickly after opening in order to go somewhere else.  They all responded that they could do this.  But for one it is not easy to digest. 

It’s not a decision that was made lightly.  But it is a decision that makes sense for where we are in this point in time.  George wants peace, quiet.  He has little energy these days and holidays can be especially hard on him.  If he’s not feeling well, he feels bad that he spoiled the day for others.  We need to take the emphasis off of the holiday. 

As parents, we know that change is inevitable.  Quite frankly, I am utterly amazed that we have had our children and grandchildren with us every Christmas up to this point.  Other families with the same type of logistics as us have already made adjustments to how they celebrate.  It is not uncommon for families to do their traditional activities on a day other than the actual holiday.  I so love that my children have been willing to do this even when it has not been easy to do so.  So asking them to change was difficult. 

Change is hard.  Accepting the fact that cancer changes things is hard.  Knowing that this could possibly the last Christmas with George is very hard.  If he is still around next year, his health will be incredibly compromised by cancer.  It is hard for us - - but harder yet for our children.  They aren’t here day in and day out as we watch what has happened to George.  They see it for bits and pieces of time when they come.  They have had more glimpses of it recently as they’ve been here when George was having some bad days. 

None of us like this.  None of us want it to be this way.  But as I told the girls, it is what it is.  We can hope and pray for a miracle – but we need to be prepared that the answer could be “no”.  We hate that word.  We’ve hated that word since we were young children.  God doesn’t always answer the way we want him to.  “Thy way” not “my way” says the Lords Prayer.  Our job during this time is to hang on to our faith – and hang on to the hope that God has a plan for us and that when it is time for any one of us to go, that God and Jesus are waiting for us.  We will be free from any earthly pains we may have. 

The toll of cancer.  It changes the way we think and move and breathe.  It affects our relationships.  It permeates every aspect of life and forever changes us.