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. 

The C Word – I Surrender … All??

It is human nature to want to be in control.  We learn from a young age that if we say or do certain things, we can get “our way”.  As infants who cannot speak and tell our parents what we want, we cry.  As parents who don’t know what it is the cry means, we change the diaper.  Crying persists.  We feed the baby.  Still fussy.  We keep trying to figure out what it is our infant needs that will quiet them down.  I had one child who just wanted to suckle – a lot!  It was the only thing that kept her from crying.  I spent hours with her in my arms just to keep her quiet!

As we grow a little older we learn how to manipulate our world to get what we want.  Did you have a child that asked the same questions incessantly?  Mommy, can I have that toy?  Mommy I want to eat (even though they just finished a meal).  The word “NO” is not in their vocabulary.  No matter how many times you tell them no, they persist.  In fact, they may resort to screaming, crying, pouting or other behaviors.  And you give in!  We’ve all done it.  Some parents are stronger than others, but even the strong parents have to admit there were times they gave in just to be able to have some peace and quiet.

This form of manipulation or control morphs over the years.  Sometimes it takes on a life of its’ own.  We WANT to be in control.  We NEED to feel we are in charge of our lives.  We spend a lot of time trying to control our environment – our home, our kids, our spouses, our jobs, etc.  If we can control the world around us, we may feel more secure within ourselves.

We know we cannot control everything.  No matter what we do, the sun will always rise in the East and set in the West.  If it’s raining, we cannot stop it.  If the birds are chirping, we cannot stop them. We cannot stop every car from crashing, every child from falling, every person from bullying, every loved one from dying.  It is just not possible to control every part of our environment.  Not that we can’t do our part to help prevent these things.  But sometimes no matter what we do, these things are going to happen. 

I recently struggled with issues of control.  It’s any easy trap when you have a loved one who is sick.  You want them to feel better, to do better, to achieve a greater sense of purpose, to have a better quality of life.  You, like me, try all sorts of tactics to make that happen.  You remind them of things you know they already know – “You need to eat more.”  “You need to drink more.”  “You need to move or exercise more.”  “You need to get out in the fresh air or sunlight more.”  Poke, prod, cajole, remind.  Anything to motivate them. 

When that is met with resistance either because they can’t, they don’t want to, or some other reason, you get frustrated.  You feel that you have lost control. 

Funny thing is – you never had the control to begin with.  Another thing I have learned over the years, but sometimes forget – is the only thing you really have control of is yourself.  You cannot control others actions or lack of actions, you can only control your actions and reactions to others’ actions.  You have the ability to forgive, forget, enjoy, be angry, love, hate, lift up, put down and all the other types of emotions.  Those are yours to own.  Every time something happens in the world around you that you like or dislike, you have the free will, the choice, to decide how you will react. 

We forget about that – I forget about that. 

Then, I am reminded through song or prayer that I have to surrender my control, to turn it over to a higher power to handle.  It’s not always easy.  I struggle with this issue.  You may struggle with this issue.  To be in control of the world around us gives us a sense of well-being – to give up control may make us feel weak or defeated.  Do we have to give up ALL control?  Is everything really out of our hands?  The answer is yes – with the exception of controlling our own feelings, actions, reactions.   You cannot control others’ actions.  You may be able to help shape or influence theirs, however if they are not willing to learn or listen there is nothing you can do. 

As parents we do try to shape and mold our young ones’ lives.  We show them what is right or wrong.  We do our best to make them “good people”.  Once they become adults, it is up to them to determine what kind of person they want to be.  They may ask for our advice but choose to toss our advice out the window.  They may do things we don’t like.  Some lose control due to disease or mental illness.  They are no longer ours to control. 

Do I have the ability to surrender everything to God?  No.  I am human and I am imperfect. 

In my world right now, I can only control my own behaviors.  I have made a conscious decision to back off and not try to be in control of others.  It’s not easy, not by a long shot.  Since doing this, not only now but in prior situations, I find that I do not get frustrated as much.  I am more content.  Does that mean I have stopped entirely?  Of course not.  I am more cognizant of my actions and reactions and carefully choose how to act or respond (or not).

When this song comes up on my playlist, I lift up my hands and try to remember what I must learn to do.  It’s a process.  I’m not perfect.  But I will try…. to surrender all.

  I SURRENDER ALL

All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live

All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me Jesus take me now

I surrender all
I surrender all
All to Thee my blessed Saviour
I surrender all

All to Jesus I surrender
Make me Saviour wholly Thine
Let me feel the Holy Spirit
Truly know that Thou art mine

All to Jesus I surrender
Lord I give myself to Thee
Fill me with Thy love and power
Let Thy blessings fall on me

All to Jesus I surrender
Now I feel the sacred flame
Oh the joy of full salvation
Glory glory to His name

Songwriters: Eric D. Dawkins / Winfield Scott Weeden / Judson Wheeler Van Deventer / Derek Clark / Anson R. Dawkins

I Surrender All lyrics © Warner/Chappell Music, Inc, Universal Music Publishing Group

The C Word – R is for Rest – Recovery – Respite – Resolve

It has been four weeks since George’s last treatment. 

R is for Rest – George still has very little energy and spends much time resting in his recliner or relaxing in bed.  It’s not quite the same fatigue he had during chemo, but it is still there.  Some days he literally opens his eyes for only about 5 hours.  And other days, like today, he has been awake and watching TV and reading on his iPad and even enjoying dinner out with some friends this evening.

R is for Recovery – His body is in need of recuperating from the poison injected in his system for eight weeks.  I am happy to report that his appetite has increased some, though is still on the low side as has been the case for the past year or so.  His mouth sores are gone.  His taste buds are reawakening.  He is gaining back a little bit of the weight he lost. Although his blood counts were low at his last doctor appointment, those numbers should now be recovering as well since we are past the 3 week mark.  This means that he is able to go out more and he is looking forward to going back to church in another week.  We do not know how long it will take to get to pre-chemo status but are hoping it is less than the 3 months people tell us about since he did not get a full six month regimen of chemo.

R is for Respite – Sort of going back to more normal.  And, for me, feeling that I can take time away from home and enjoy doing things with others.  Having George’s immune system on the mend means that I can also be out amidst larger groups of people.  I even plan on going overnight to visit my daughter in Roseville.  It’s been over two months since I’ve been away from home for an overnight anywhere.

R is for Resolve – We have resolved that we want to improve George’s quality of life in order to enjoy whatever time he has left here.  Again, we don’t know exactly how to make that happen, but it is a goal.  Life beyond the recliner!  Due to the pulmonary embolism (PE) and blood clot, we can’t fly anywhere for six months – but hopefully will get to a point where we can do day trips or two to three day trips. 

We likely won’t have any additional news for the next few months – unless something happens to warrant our undivided attention.  For now we relish the fact that there are fewer doctor appointments, fewer days of exhaustion and more time to be together.

The C Word – Round 4 done and so are we

I can hardly describe what the past eight weeks has been like.  Chemo has been one horrific experience for George with side effects that took him by surprise.  As each chemo round came and went, some known side effects got worse while others ebbed and flowed depending on where he was in the cycle.

The knowns: 

Neuropathy:  This was somewhat mild and, on the occasions he felt them, appeared mostly at night in bed. 

Peeling fingers:  His finger started peeling at the tips and worked their way down the entire length over time.  This didn’t start until about week five or six which is apparently about the time they would do so.

Mouth sores:  He’s had a few but not ever as bad as ones he had after his surgery and HIPEC back in 2014. 

Loss of taste:  This changes from day to day.  Some days he can taste certain things and other days he can’t.  We never know what it will be.

Loss of appetite:  This has gotten very bad over the past few days.  He has no appetite and is eating very little.  He eats because he knows he has to but would be content to not eat a thing.

Loss of hair:  This has been minimal – mostly some thinning but he does still have hair.  I noticed that it is whiter now than it was.

Loss of energy/stamina:  This is one of the biggest hits to him.  He has gotten very weak over the past two months.  Standing for longer than a few minutes is difficult.  Walks are fairly short ones these days. 

Diarrhea:  Been there, done that. Has had this issue for the past few years. However, the difference is that he started taking Imodium for the first time in a few years.  Even with eight Imodium a day (which, by the way, he can actually take more of if needed)… he still is having issues!

The unknown:

Anal fissure:  We had never heard of these.  They were not on the “list of side effects” and never mentioned by anyone else.  This particular side effect has been so brutal!  They can and did make a grown man cry in agony.  We have tried just about everything to relieve them and at one point had it almost under control - - only to have the next chemo treatment and back the pain came!  This was the absolute crushing side effect ever.

Emotional turmoil:  A cancer diagnosis put us on a roller coaster of emotions.  But chemo has brought a whole different set of emotions.  George finds himself no in control of his emotions anymore.  A touching commercial or a scene in a show will bring tears.  This past week has been especially difficult as we struggle with “what’s next” in our journey.  The fear that exists can be daunting.  Fear of the future.  Fear of being alone.  Fear of change. 

Yet here we found ourselves on the precipice of more change.

On Monday there was a CT scan to find out if the chemo is working.  We wouldn’t find out the results until today.

During the week George did a lot of thinking about his treatment.  He is so tired of being tired – more like exhausted – even after sleeping.  He doesn’t like the fact that he’s not hungry.  He’s lost about 7 or 8 pounds this past week.  He is tired of the pain he experiences every time he needs to use the bathroom.  Given these issues, he decided even before the appointment that he wants to discontinue chemotherapy treatments.  The side effects are not something he thinks he can tolerate for another four months. 

This is a catch-22 decision as one the one hand he feels relieved and hopes to get back to where he was pre-chemo yet on the other hand wonders if he’s giving up too soon.

Going back on “watch and wait” means that we will be fully engaged with palliative care to help treat symptoms as they arise.  Hopefully we can find the right solutions so that George is not only comfortable but wants to do more than sit in his chair. 

It also means that there is no other treatment unless or until something happens to warrant a procedure or a surgery.  This means that should he get a full bowel obstruction, he would likely by hospitalized and treated and further surgery could be involved.  We acknowledge that any new surgeries will result in more lifestyle changes because he is “running out of spare parts”. 

And me?  While I acknowledged that I knew this day was coming, I found myself restless, anxious.  Although the first half of my night was spent in peaceful slumber, I woke to “hearing songs” replaying over and over, something that hasn’t happened since I started taking antipressants and sleep medication.  I finally fell back to sleep but kept having dreams that would wake me up.  I was tempted to stay in bed this morning but knew that the best thing I could do for myself was to get up and do my early morning walk.  I noticed that the pep in my step was just not there today.  A lot on my mind as I thought about the doctor appointment that was coming up.  I was anticipating the surge of emotions as we verbally declared “No more treatments”.  

It turns out that was the least of our worries today. 

The scans showed some stability in two small tumors on the lungs, but nearly all the others had slight growth from the scan a few months ago.  George telling the doctor he wanted to stop treatment was easy.

THEN…. We found out that the scan also showed a “subsegment pulmonary emboli” in one of the lobes of his lung.  As we sat chatting with him about that, his assistant was scheduling an ultrasound for today as soon as possible.  In fact, my phone buzzed with an alert for an appointment in just one hour!  We found out that cancer actually puts one at risk for clots!  Another unknown that we had not anticipated.

We quickly ran home so I could at least pick up my crocheting and have something to do.  Rushing back to the center, I grabbed a sandwich at the café. 

After the ultrasound, George came out and said that they found a blood clot in his left leg. So…… back upstairs we went to meet with our oncologist’s nurse.  We then spent the next hour or so waiting for a few things.  Waiting for one of the nurses to find Xarelto at a local pharmacy and check on costs.  Waiting as they talked to the doctor and discuss alternatives after we found out the cost would be nearly $500 for a 6 week supply of starter meds! Apparently, George’s insurance is in the “donut hole” of Medicare where he has to pay out of pocket for a while.  The nurses did an excellent job of sorting everything out and finding a solution that worked for George to get started on meds tonight.

While we are grateful for the scan because it caught the PE before it did damage, we are frustrated that there is another glitch for George.  Not only does he have to deal with untreatable cancer, but now will likely be on blood thinners and hope they do their job of dissolving the clots. As he says, “the hits keep on coming”.  Right now, the clot and the PE are more critical than the cancer! 

This was not at all what we anticipated for the day!  We thought we’d be home by around noon but instead spent nearly 5 hours at Stanford.  Long day for both of us.  Long day of emotional waves, anger and frustration. 

We feel as though the universe just did another flip flop on us.  Not as bad as the one that occurred just 4 years ago (8/9/2014) which started me on this blogging path, but a flip flop none-the-less. 

It is time to take a deep breath and navigate the twists and turns that we both chose this week and also for the ones we didn’t choose.  No more chemo – back to watch and wait and treat symptoms.  Acknowledging that it will take awhile for him to get back to where he was before we started chemo – and hoping he can get there.  And now we also need to be watchful for symptoms in case the clot or PE makes a move.  And, much to George’s chagrin, add more pills into those wonderful containers!  It feels like a pharmacy here sometimes!

For those reading this blog, we appreciate your prayers that the clot/PE issue clears up with no complications.  While we are feeling a little more peace about the decision to stop chemo (I guess it helps to have something else to divert your attention), we pray that things move slowly and that we are able to manage symptoms in order to have some quality of life while we can. 

If you want to support our cancer cause, you can head over to my Etsy site (CAREAngelsCreations) and see what’s there.  I will be adding over 40 bowl cozies by the end of the weekend – I hope!  I had planned on sewing today but we all know where that time went!

If you’ve sent cards or made phone calls to us, we appreciate it so much.  If you’ve visited, thank you thank you!  Anything that brings a smile to George’s face or takes away the boredom of sitting all day long is wonderful!  Keep it up!! 

The C Word – Quiet reflections

For reasons I will explain later in this post, I felt impelled to reflect on personal experiences with loss and their effect on me.

As children, the closest thing most of us have to loss is that of a beloved pet.  We had so many kittens and cats growing up that I can’t remember most of them.  I vaguely recall crying once or twice at a passing.  The memory so fleeting I can’t be sure which cat it might have been.  I also recall a couple of “burials” in shoeboxes on the side of a hill down near the pond on our property.  During my last visit home the hill is not recognizable anymore, any trace of long gone pets has disappeared.

I supposed I was lucky that my first recollection of a human death was my grandfather in 1969.  I was thirteen years old.  I recall a few things from that period of time.  I knew he had fallen and was in intensive care.  I remember not being able to go visit him there.  I remember crying after he died – and equally remember one of my cousins not crying which left me baffled and feeling I was doing something wrong.  I don’t remember much about the memorial service, but others tell me there was lots of crying going on.  My grandfather was a beloved man by so many.  But, once the memorial service was over and everyone returned home, I don’t remember anyone talking about it much more. 

Being raised in Christian Science, people don’t die, the “pass on”.  While my thirteen year old self probably wanted to grieve, the behavior of those around me did not teach me how to do so. 

In fairly short order, two more grandparents died within the next year, my dad’s father and step-mother.  There was no service for them.  In fact, they were hardly mentioned at all.  Were they gone and forgotten too?

Many years would pass before I would experience close, personal loss.  By that time, I was on the West Coast and these deaths were on the East Coast.  My maternal grandmother, a college roommate, aunts or uncles.    I remember feeling sad but, being far removed from any activity going on in relation to these deaths, it was easier to brush the feelings aside. 

And so it was in the year 2000, when I received a significant blow in my loss experience, that I found myself lost in a world I didn’t know how to navigate.  When my first husband died, I found myself in counseling at the recommendation of one of my attorneys.  Only then did I realize I had never learned to grieve in a productive manner.  Only then did I learn how much those prior death events had impacted me.  I needed to learn this process at the age of 43. 

Looking back at that year of grieving, I realize there were many things I should have done differently.  I was more self-involved than I though I was - and I didn’t recognize what my daughters needed from me.  Not one to want to be stuck in a quagmire, I was determined to push myself through the grief as quickly as possible and move on.  I wanted to be happy again.  It’s not bad to want to be happy, but the way I went about it was probably flawed.

However, in this process God put another man in my life.  A man who would help me cope with some of my grieving issues, who could help put things into perspective, who allowed me to cry yet could also make me laugh.  Someone I could lean on as I went through more personal loss in the years to come.

In 2006, my dad started to deteriorate from dementia.  I was on edge just waiting for the phone to ring.  Knowing this, George suggested I fly home to be with him and to help my mom.  This time with Mom and Dad proved challenging yet rewarding at the same time.  I was able to assist Mom with the care of my dad.  By the time I arrived he was bedridden and not too responsive.  I went between periods of caregiving in ways a daughter should never have to experience – to periods of just snuggling with him and being father and daughter.  It was as if I had a toggle switch on my body – being what I needed to be at any given moment.  Daughter – caregiver – daughter again.  I was with my dad when he took his last breath.  That was such a profound moment.  Heart wrenching yet peaceful as his pain was finally gone.  To this day it is an experience I would never trade away.  While I miss my dad, I recognized he had been fading away for a few years and thus my grief was not as deep as other experiences.

Over the next few years I lost other family members – aunts and uncles mostly.  Again, not being back East when these occurred made it relatively easy for me to not experience much in the way of grief.  When I lost a cousin who was just a few years older then me, I could scarce believe that “my generation” was starting to die. 

Today marks the sixth anniversary of my mom’s death, which is why I pause for reflection.  I was just days away from a planned vacation to visit her for a little over a week.  I was super excited for this trip because I had been relegated to taking care of George’s mom for years at this point and needed to get away.  To say that I was devastated to receive a call from my sister telling me that Mom had died would be an understatement.  Mom’s death shook me to my very core. My vacation turned into a work week as my siblings and I took on the laborious task of clearing out our family home, organized a memorial service, and leaned on one another.  As we went through the house to determine what to keep, save, toss, etc., we had some opportunity to reflect on memories.  With my mind concentrated on getting through this house cleaning, my grief was temporarily suspended. 

In the ensuing months, that grief would slowly take over my life.  I carefully hid it from my loved ones.  Yet I could feel myself slipping further and further into a dark hole.  By the end of the year I didn’t mind that I had to help take care of my mother-in-law as I had no desire to be out with the living.  I didn’t care about going to church or seeing friends.  I was “perfectly content” to hole up at home.  Thanksgiving and planning for Christmas were tedious – doing them out of a sense of obligation. Then, over the Christmas “holiday” time, I knew that I had to somehow pull myself out of my self-made hole and start to live again before it got any worse.  It was then that I stumbled on a volunteer job that would not only pull me out of my slump but lift me up and give me such joy again.  I knew that Mom was my angel as I did something she loved to do (volunteer).  This volunteer job turned into a paying job for me within a few months.  Wow!

Today I spent a little bit of time in the backyard that I designed with some of my “inheritance” from Mom.  In a way, it was spending time with mom as I trimmed a few things that needed to be taken care of.  I can picture my mom in her yard and her garden as she bent over to weed, trim and plant flowers. 

While it was difficult last year to lose George’s mom, her death also brought with it a great sense of relief.  Like my dad, my mother-in-law had been disappearing for more than a decade as she spiraled into her Alzheimer’s riddled brain.  Although we had experienced some truly joyful and fun moments in the months before she died, in the last few weeks she had truly started to leave her physical body. 

As I sit here today and tell you about some of the people I have lost in my life, I am remembering some of the fond and fun memories I have of these people. Lessons they taught me, laughter we shared, conversations that connected us – these are things we gave to one another and things we must remember beyond the pain of loss.

My grandfather had a great smile.  He used to take us “grandchildren” for walks on a lazy Thanksgiving afternoon.  My cousin recently informed us that my grandfather will be inducted into a local Hall of Fame later this year to honor him for decades of blazing walking trails the area. 

My grandmother was a short, stout woman with a great smile and laugh.  One of my favorite photos of Grammy and Grampy is them in their dining room, my grandfathers arm around the shoulders of my grandmother and both with smiles on their faces.  Their home was always open to family and we did have many family times there. 

My college roommate was a tiny woman with a fierce loyalty to her family and a great sense of humor.  She married her high school sweetheart and had three children before her untimely passing. 

My dad did much with little, raising a family of five on a limited budget.  He was a role model of someone who worked hard to make a living.  He also took us on many vacations, giving us a sense of the world around us.

My  mom, well she was our role model for love, for learning acceptance of others, for learning how to give to others.  I enjoyed my chats with mom, ones I had with her weekly for the last eight years of her life here on earth.  We could chat on almost any topic, bounce ideas off one another, relive memories together.  She had and amazing memory – so much better than my own.  The last time I visited her I recorded some of my talks with her so that I could remember them (I didn’t know it would be the last time I would spend time with her.)

My parents together gave us a home that was safe, warm and loving. One always felt welcome there. 

My aunts and uncles are woven into the tapestry of my life.  Reunions, holidays, spending time together.  I was fortunate that most of them lived close enough and some were close enough in age to be playmates when we were young.  While many of us moved away from our “home”, my memories of them are fond ones.  All so different, yet all so loving and supportive of one another. 

My first husband, unknowingly, taught me how to be independent. I had to do a lot on my own as his jobs or his hobbies kept him away from home a great deal of the time.  I watched and learned some basic “repair” skills as he did those things which seemed to come naturally for him.  He was playful, he enjoyed creating things, he enjoyed fixing things, he loved his kids.  He was passionate which could be good but also bad as he could easily get fired up about things not going right. 

My mother-in-law taught me patience.  I had to have a lot of it to help her over the years as there were times she could be a sharp pistol as she fought to maintain her memory and dignity.  She couldn’t understand that there was no way to fix herself.  There were times she would yell or fight – and five minutes later not remember a bit of it!  A roller coaster of highs, lows, ups and downs for so many years.  But I will always remember the funny things that occurred over those years.  She gave us many things to laugh about – yet had no idea she did that!

Loss is inevitable in our lives. The stronger our love for that person was, the harder we feel the loss.  For if we didn’t love, we wouldn’t hurt.  Yet if we allow ourselves to look, we will find the positive things those losses teach us.  We have to look for the rainbow, look for the pot of gold that waits for us as we begin to heal.  It may seem cliché to say that heartbreak and loss makes us grow stronger, but it does.  It truly does.  It may not happen right away.  Not everyone finds that pot of gold because they don’t know how to do so. 

I am stronger for having known these people who are now guardian angels.  Each one gave to me something which has made me into the person I am today.  While I don’t relish the thought of more loss journeys, it is inevitable as “my generation” creeps closer and closer to our twilight years.  I will cherish these relationships while I can.   As I experience more loss going forward, I will be able to look inside myself to see what it was these loved ones gave to me.  So, while I am thinking of it, I want to say “thank you” to those who are reading this blog – because likely you are one of those people who has made an impact on my life, someone I am glad to have met in my lifetime whether for a short time or a long time.  Because of you, I am a better person!

The C Word – Round 3 – Unexpected Setbacks

Oh my gosh.  The past five weeks have been filled with a lot of turmoil. 

George developed fissures after Round One and we had to go see Dr. Bastidas.  He recommended sitz baths, Ativan and Imodium.  We tried those but things got only slightly better.  After Round Two when things started getting worse again, I put in a call to Dr. B for suggestions.  He suggested more Imodium and Ativan and sitz baths.  You see, George is so tired, we didn’t do these things consistently the first time.  Finally, two days before Round Three, he was feeling well.  Things were nearly normal.  Not a lot of pain.  Yeah!  We thought things were finally under control.

Butttttttt….. no that was not to be the case.  During Round Three things started getting bad again.  Really bad.  So we ramped up again on the meds on Friday and Saturday…. But now we have the opposite problem. 

George woke up this morning with cramping.  And feeling cold.  Uh oh… dehydrated!  I had to remind him that he needed to drink MORE water when he is taking Imodium but since he sleeps all the time he hasn’t been drinking.  He though I was being mean but I said either you drink fluids or I will take you to the ER and have them give you IV fluids…. Your choice.  He opted for the first.  I set up Alexa to remind him to drink water every hour – that way I didn’t have to do it all the time.  I also marked the water bottles in order to get him to drink more than a few sips each time.  By the end of the day he was only slightly better - - tomorrow we will do more of the same!!  I have so many alerts on my calendar to make sure he takes meds, drinks water, eats, etc.  I’m glad “Alexa” can help me out with some of those reminders! 

I am struggling with getting him to move.  One of the things that will help is walking – but he says he is too tired and weak to walk.  However, when you don’t get up and move you do get weaker so you have to fight that.  It takes energy to make energy. 

Cancer plays a huge head trip, that is for sure.  George is so caught up in a cycle that he can’t get out of it.  We did finally meet the palliative care team last week and he has started on anti-depressants (low dose for now) to help combat it.  It takes a few weeks to start working fully.  So far they haven’t appeared to do anything for him.    

It is like he can’t catch a break.  Out of the past 5 weeks he has literally only felt good for about 6 days total.  The rest of the time he has had one pain or another.  He has slept more and more.  He can’t keep his eyes open during the day so even if he’s not sleeping he is just laying in his chair with his eyes closed!  The house is so quiet all of the time! 

I was expecting a few days during each cycle of this – but it has literally taken over his life.  And I feel like he has succumbed to this and can’t pull himself out of it.  He doesn’t have the energy to fight it.  He has a hard time eating, much less drinking, to keep his body not only with the right nutrients but to also flush the chemo out of his body more quickly.  And, just when things start getting better he goes back down and each time seems to sink lower and lower.

I sure hope the anti-depressant drugs will kick in soon.   Mental state has a huge effect on physical state.  He desperately needs something good to happen!!

I do have some positive news – On his birthday he actually was having one of the good days of his chemo cycle.  He got phone calls and visitors that day which cheered him up quite a bit.  Yesterday, Stephanie came down and presented him with a book of well wishes from a lot of different people in celebration of his 65^th birthday.  Our kids and some grandkids were here to celebrate with him.  He was not having a great day but was awake to at least enjoy his gifts.

Our granddaughters are here this week for VBS and I sure hope he at least will have a day or two that he feels good enough to engage with them and make some memories with them.  I am enjoying their laughter and playfulness, even riding my bike while they ride their scooters so we all get some fresh air.  They are great kids.

In two weeks we will have the first CT scan to see if the chemo is working.  Not sure what we will do if the chemo is not working.  So many things to think about.  Cancer is hard work for the patient and the caregiver. No matter what choices we make, they will require hard work and determination. 

We are told that “God never gives us anything we can’t handle.”  He must think we are mighty strong sometimes!  Or He just has a warped sense of humor!

The C Word – Respite followed by Round Two

I was able to get away for a very quick respite this past weekend.  I had been planning this trip for a very long time and was glad we were able to work it into our schedule.

My niece was married in Chicago on Sunday and it was a great opportunity to take some time to relax and breathe and not have any caregiving duties. 

I say it was quick – because from door to Chicago and back I was only gone 54 hours!  And, when you take into account the airport wait, flight and taxi rides to/from Chicago airport, you can deduct 15.5 hours… I was literally in Chicago for about 38 hours!! 

But… I will take what I can get.  I was able to spend time with two of my siblings, my nieces and the groom as well as extended family.  There was a nice gathering on Saturday evening and the wedding on Sunday evening.  Had breakfast on Sunday with my brother, sister-in-law and sister, brother-in-law.  My sister, her husband and myself even spent a few hours at the Museum of Science and Industry.  While we only covered one of the three floors of exhibits, we saw a lot and had a great time!  And.. on top of that… the weather could not have been more perfect!

It was a great time of respite for me and likely the only one I will get for a very long time.  So appreciate it I did!!

Upon landing in Chicago I was greeted by a plethora of text messages that came in while I was in the air.  My daughter, Becke, was going in for gall bladder surgery.  I have talked with her recently and although we knew that it could happen at any time since her meeting with the surgeon recently, I’m not sure I expected it to happen this quickly.  While there was a part of me that wished I could be there with her and her family, I realized that even if I was home I would not have been able to get up to help out.  Fortunately, things went smoothly.  My son-in-law kept us updated throughout the day.  She has her husband and daughters who can lend a hand for the short recovery this is supposed to take. 

Meanwhile, also back at home, Stephanie was able to come down and spend time with her dad and be here to help him out.  George had a luncheon planned with some buddies of his.  Steph had been given implicit directions from me so when her dad said he would drive his friend Larry to see their other buddy, she told him “oh no you’re not!  You’re not allowed to!”  She took great pride in being able to do this and sent me a message, “Thank you for allowing me to be in the position where I could finally tell Dad that he is not allowed to do something.  It was a beautiful, magical moment for me.”  She will cherish that moment for a long time!!

While I had originally hoped to spend an extra day in Chicago, I needed to be home as today was the start of George’s second infusion.  We had expected it to take a little bit less time today as one of the pre-meds was being cut from 1.5 hours to 1 hour.  Alas, we left at almost the exact same time as the first one.  Again, it is more of a non-event.  A lot of sitting and waiting for each infusion to be done.  We expect that he may be a little more tired during this infusion period.  We hope that the side effects are still minimal.  We also hope that George’s physical issues are resolved enough so he isn’t in as much pain this round.

The C Word – Emotional Roller Coaster

This week has been challenging for George.  Just as he was starting to perk up a little bit, something happened to take him straight down to the bottom again. 

He was in excruciating pain when in the bathroom.  Agonizing pain.  After a few days we called the oncology doctor on call and explained what he thought was going on and she recommended Sitz baths and Preparation H.  So - - I went out and stocked up on that type of stuff.

Still, today, he was in agony.  Sent a note off to the doctor to tell him what was going on and saying we needed to deal with this even if it meant postponing next week’s infusion.

The response – try the OTHER kind of preparation H (who knew that the difference between the green label and the blue label was significant?  Of course, we had green – they said we should use blue).  He also recommended we try to see Dr. Bastidas.  He also said that regardless of what happens, we are not going to skip a treatment.

Fortunately for us, Dr. Bastidas could see us today.  He explained some of the treatments and what could be happening (he is very good at drawing sketches to explain things).  After examination, it turns out George has an anal fissure.  Hmm, that was not something we expected.  This is a common enough occurrence that the prescription ointment is something they have pre-printed to send us off to the pharmacy.  The other addition is to take Atavan which will relax the muscles necessary.

So… another new regime.  George is feeling a little bit better already so we are hopeful this does the trick. 

We always come away from Dr. Bastidas’ office feeling so much better.  What a godsend he has been.

In the meantime, with George being in such discomfort, his emotions ran high and low for a couple of days.  It is hard as a caregiver and wife to watch him go through this.  All I could do was lend a sympathetic ear and try to reassure him.  I spent more time downstairs than normal to let him know I am here for him. 

I got a few things done when I could as I need to prepare for my quick weekend getaway.  Now that he should be feeling better, I feel better.  He will have company over part of the weekend so he won’t be alone the whole time.  This is likely the only getaway I will get for the rest of the year so am looking forward to taking this trip to Chicago to attend a niece’s wedding and spend time with my sister and one of my brothers. 

The C Word – Chemo Day 4

Today was challenging for George.  Not only was he tired but he was busy going to and from the bathroom.  For the first time in nearly two years he took an Immodium to slow things down so he could rest.  It appears to have done the trick.

He has napped a number of times today for varying lengths.  Just too tired to do much.  He normally is on his iPad for most of the day but he has barely pulled it out in two days. 

One more day – and hopefully he will start to perk up for a bit.  That is our expectation.

The C Word – Chemo Day Three

Chemo day three of round number 1.  Just as people told us, George started to tank a bit today.  He awoke tired and stayed tired all day.  He took something like three naps (a 2 hour one and two 1-hour ones).  He ate pretty well and drank what he should… but kept falling asleep.  Good thing I know the schedule and would wake him up for nausea meds and to drink fluids as staying hydrated is so important.

He now is “pump free” and looks forward to a shower in the morning!

I finally got my sewing machine back after over a week in the shop.  I have missed “my baby” and immediately set to work finishing a wedding gift for my niece.  I have a backlog of things I want to work on so am glad that the machine is working again so I can sew while George sleeps. 

I anticipate that he will be like this for at least another day and maybe two.  That is what we heard … so we shall see.    

He has not really had any bad nausea spells.  Aside from slight foot tingling, so far the side effects have been minimal. 

The C Word – Chemo Day Two

George had a fairly good night of rest.  The only thing he noticed last night was that his feet had a tingling sensation in them for a bit.  But he awoke rested this morning.

He actually commented that right now he doesn’t feel too tired.  He took a nap today but a shorter one than usual – and only one.  He has been eating well today and keeping hydrated. 

The pump is an inconvenience but he is doing okay carrying it around when he moves around the house. 

So, not too much to report today.  I guess that’s a good thing.  I am sure there will be a change in a day or two – but maybe we’ll be surprised!

The C Word – Chemo Has Begun

Just as I was nearing home this morning as I was riding my bicycle and listening to my “tunes”, two familiar songs came on, back to back.  The timing was so appropriate.  The message to me very clear.  I needed to hear these today.

Today was the start of George’s chemotherapy.  As we approached this day, neither one of us was too concerned about today’s events.  George does have some concerns about side effects but those will be the worst on days three through five. 

We arrived at the Stanford Cancer Center at 8AM as at 8:15 the first of three “appointments” was necessary.  The blood draw.  George has a port, so he was not sure what kinds of things they would do to use that.  That was “lesson number one” for him.  Forty-five minutes later we had an appointment with the doctor to review the labs and go over a few details.  Then back to the waiting room where we would be called back for the infusion.

Our appointment was at 9:30.  By the time we went over paperwork and signing off on procedures, getting anti-nausea meds, etc., it was nearly 10:30.  We didn’t know that there would be three infusions.  The first one is leucovorin.  It is not a chemo drug but is used to enhance the effects of the 5FU chemo drug.  This infusion took about two hours.  After that they did a “bolus” push of the 5FU – this is a single dose in a syringe that they push into the port to get things going.  Once that was done he began the Avastin which, for the first dose, they do slowly over a 90 minute period.  [Over the next two infusions that will be lowered to 6o minutes and then 30 minutes.]  Then, hooked up to the pump and home we went.

During the time he was getting the Avastin, a home education nurse stopped by to show us what the pump looked like and walked us through things that might happen and how to correct them.  It was pretty easy to learn and, of course, we have papers to guide us through those processes as well.

George did well today.  He didn’t nap until after we got home.  He was slightly nauseous but not too bad.  He will wear this pump for exactly 48 hours so has a little carry bag that must accompany him wherever he goes.  That will take getting used to.  For five days he will have a dedicated bathroom in the house and a separate laundry bin as his things need to be washed separately from other things.  Once that five days is up, there are no special requirements. 

I spent most of the time sitting with him and crocheting a new, smaller project.  Listened to an audio book, a little music and, in general, it was as if I was home - - except the chair at home is more comfortable. 

Overall, today is what I would call a “non-event” day.  A lot of sitting around, just a different location than home.  Nurses in and out doing what needed to be done. 

Now I will share what I listened to his morning. 

The first song, “Here as In Heaven” is sung by Elevation Worship.  It states that the atmosphere is change now for the Spirit of The Lord is here… God’s love surrounds us… A miracle can happen now… 

The second song was “Angels Among Us” sung by Alabama.  It states that “I believe there are angels among us, sent down to us from somewhere up above.  They come to you and me in our darkest hour to show us how to live, to teach us how give, to guide us with the light of love.”

Indeed, beginning chemo is a change in atmosphere and we need the Spirit of the Lord to surround us and we need a miracle.  Indeed, there are definitely angels among us, praying for us, ministering to us.  The doctors and nurses are angels as well as they take care of the medical end of things.

These two songs calmed me this morning.  They were the exact words I needed to hear today.  God definitely knew my mind and my heart. 

"Here As In Heaven"

The atmosphere is changing now
For the Spirit of the Lord is here
The evidence is all around
That the Spirit of the Lord is here

Overflow in this place
Fill our hearts with Your love
Your love surrounds us
You're the reason we came
To encounter Your love
Your love surrounds us

Spirit of God fall fresh on us
We need Your presence
Your kingdom come
Your will be done
Here as in heaven

A miracle can happen now
For the Spirit of the Lord is here
The evidence is all around
That the Spirit of the Lord is here

"Angels Among Us"

I was walking home from school, on a cold winter day
Took a shortcut through the woods, and I lost my way
It was getting late, and I was scared and alone
But then a kind old man, took my hand, and led me home
Mama couldn't see him, oh but he was standing there
And I knew in my heart, he was the answer to my prayers

Oh I believe there are, angels among us
Sent down to us, from somewhere up above
They come to you and me, in our darkest hours
To show us how to live, to teach us how to give
To guide us with the light of love

When life held troubled times, and had me down on my knees
There's always been someone, to come along, and comfort me
A kind word from a stranger, to lend a helping hand
A phone call from a friend, just to say, I understand
But ain't it kind of funny, at the dark end of the road
That someone lights the way, with just a single ray of hope

Oh I believe there are, angels among us
Sent down to us, from somewhere up above
They come to you and me, in our darkest hours
To show us how to live, to teach us how to give
To guide us with the light of love

They wear so many faces, show up in the strangest places
To grace us with their mercy, in our time of need

Oh I believe there are, angels among us
Sent down to us, from somewhere up above
They come to you and me, in our darkest hours
To show us how to live, to teach us how to give
To guide us with the light of love
To guide us with a light of love