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. 

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!