Always and now

Terence's hospice nurse was here today.  His ever faithful friend Cead (our chocolate lab) is there checking things out.

Monday, June 25, 2012
by sherry

Always and now

Where do I begin.......it feels like the last three days (Friday, Saturday, Sunday) have been scenes from a movie- a drama, comedy and horror movie all combined.

I guess I'll start with the facts. The levels of morphine Terence had been on were too high and had been accumulating in his body for some time- by Saturday morning Terence was confused and delirious.  The entire day was spent chasing him down as he played out the roles of a Russian hunter, a deaf person, a southern slave....our friend 'Jamal' also made an appearance giving me a lesson on the correct way to pronounce "Corn Bread".  He forgot the name of our dog (Cead), calling her "Ruby", "Spot" and "Balzak".... poor dog was confused by the end of the week end.  Being a deaf person meant he needed to communicate with me via sign language (which he doesn't know), but he didn't know that he doesn't know sign language! A better part of my day was spent  deciphering what he was trying to tell me via  his made up sign language.

Oh my.  Do I laugh or cry?

The delirium caught me off guard. It happened upon him so suddenly (but not really) I was shocked when he started thinking our house was going to get bombed.  I mean, only a few hours before, we went on a date, had a nice dinner, discussed long term financial plans......and then boom.  Terence, my husband was no where to be found inside that body of his.  What a scary and lonely place that is.  For both him and me.

 Between trying to keep him from drinking bleach and keeping 'Balzak' (Cead) safe from the 'Russian hunter',  I've had a very tiring week-end.  While in the midst of it I was on an emotional roller coaster- there were times I laughed and laughed, but then there were times I was really sad....missing my husband and thinking if he knew he was behaving like this he'd be mortified.  I was angry at times because this just isn't fair and then fearful because I am alone.  Terence has always been there for me,  been my rescuer and my protector, and it's a scary feeling for me.

So today I am plain tired. And yes, this blog is about me.

Mexico 2008- good memories.

I've been sleeping next to him, just to be sure he doesn't walk out in the middle of the night and I've taken the keys to his gun cabinet and his truck.  My heart is heavy with sorrow for Terence.  I am weary with my sighing.  The burden of grief is invisible but causes a weariness that is draining.   The depression and exhaustion I feel are beyond good advice.

The only thing I have to draw upon is God's grace.  Grace is the overflowing power of God; it's is there for me to draw upon daily.  Because the grace I had yesterday will not do

for today. 

"In much patience, in afflictions, in necessities, in distresses" - that is where the test for patience comes.  Accepting the grace of God now.   Prayer is the exercise of drawing on the grace of God.  I have a tendency to say "I will endure this until I can get away and pray".   But I can pray now; draw on the grace of God in the moment of need. Prayer is the most practical thing, it is not the reflex action of devotion. Prayer is the thing in which I've learn to draw on God's grace.  

II Corinthians 12:9
And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness.

Grace enables me to make it, no matter what. No matter what obstacles I face. God's incredible grace is there to pick me up, to revive lost hope, to heal broken bones, and to strengthen my weak heart. It is never inadequate, nor is it ever depleted. It never spoils and it has no expiration date.

 His grace is here for me (and you) always, and now.

P.S. He's resting today. Thank goodness he's no longer delirious, just a little confused.  Tomorrow will be even better- we're working out the correct dosages, trying to balance his cognitive state and pain management.  It takes time to figure it all out.   His blood pressure was low today, so I have to keep an eye on that- he's been losing his balance. Rest will help him recover from all this.  I can't wait until tomorrow- he'll wake up and be normal again; my Terence. I miss him.

...and another thing.....

Secondary lymph edema
June 22, 2012
by sherry


A lot has been going on this week.  Major increased levels of pain followed by major increased doses of  morphine to manage it (which it has somewhat helped) and now something new; Terence told me that he is having more and more difficulty walking more than 40 yards because his legs feel like they are 'freezing up'- he can't lift them.


This is most likely cause od 'secondary lymph edema' in his lower extremities which was (most likely) cause by the chemotherapy. 
 

Secondary lymphedema is a condition where the lymphatic system has been damaged. The main job of this system is to move excess through and out of our bodies. When it becomes damaged or impaired, it is no longer able to accomplish this function and these fluids (lymph fluids) collect in the interstitial tissues of our legs. This causes leg swelling.  Another important function of the lymph system is to help our bodies fight infections. With lymphedema, this ability is also weakened and the patient becomes more susceptible to infections.

Terence only told me yesterday,  " My legs have almost quit on me twice lately. I was trying to help put groceries away. I had to lean heavily on the counters and get to a chair and sit.  Sometimes I can't stand long enough to make a cup of coffee.  I can not walk very far now. Going from the car into the store is a scary thing....  I feel like my legs will freeze up, or worse, give out in the middle of the parking lot" .

 As I type this, he is getting a lymphatic massage from his physical therapist. He's been receiving one twice a week for about three weeks now.   It's working to the degree that it seems to have  reduced the lymphedema swelling in the groin area.   Today Terence has one more Oxygen Therapy (in the hydrobaric chamber) - I am hoping it will not only help with pain reduction but also help with the lymph edema.  His HBOT therapy on Weds. seemed to give him energy (which was a problem because he felt well enough and stayed on his feet- he was able to direct the yard work crew (Royce and Gabe, LOL), and he wanted to help me around the house (because for the first time a long time he felt he could).  But by the time evening came around, his legs were swollen and stiff.  

Terence shared with me his scripture reading today: "Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” –Joshua 1:9 .

He shared this because he has always told me he's not afraid of death...but the wasting away and loss of dignity and independence has bothered him greatly and he finds comfort in this scripture.   Little by little his independence is being whittled away-  I can't imagine the feeling of walking in public somewhere and all of sudden my legs freezing up and needing help. 

"Therefore, prepare your minds for action; be self-controlled; set your hope fully on the grace to be given you" 1 Pet. 1:13.  

This is our plan (besides prayer):

1. Action: seek out therapies that will help,

2. Be self controlled (Not to allow fear to creep in and lose it),

3. Continue to hope,

4. Rely on God's grace (it's sufficient for us).

Hyperbaric Oxygen Therapy?

June 19, 2012
by sherry

Today was Terence's first experience in the
Hyperbaric chamber- (oxygen therapy, HBOT).  The session is one hour long and probably much like an indoor tanning session an opportunity for a nap!

Prior to this expereience, the only knowledge I had about this kind of therapy was Michael Jackson in the '90's. Tabloid photographs of Michael Jackson lying in an unusual glass-encased medical device were published worldwide.  There were rumors of a secret anti-aging treatment or intensive oxygen therapy, but in reality the machine was a hyperbaric chamber.  Come to find out, many professional athletes own one- it evidently helps regenerate tissue and prompts faster healing.

A hyperbaric chamber uses pumps and valves to recreate the greater air pressure experienced by divers under water. Pure oxygen is pumped into a hyperbaric chamber for medical purposes.

Michael Jackson in the chamber!

By increasing the oxygen environment to the cancer cells, it makes them less virulent and in many instances destroys them- applying increased oxygen to diseased cells in the human body supposedly revitalizes or changes the cell structure.....

There is also evidence that Oxygen therapy may help people with lymphoedema (which is one of Terence's biggest problems besides cancer related pain right now).  

Simply, oxygen therapy aids healing and patients in research talk of reduced swelling and less pain, with a softening of the damaged tissue.

So....he decided to try it.  It's outside of standard care and not covered by insurance so we'll take it slowly- I am hoping that at the very least it will help in the general sense of pain relief and well being.  He's been in so much pain this week the hospice doctor has suggested he increase his morphine dosage again (from 30mg to 100mg and now to 200 mg extended release and 60 mg of immediate release)- which he absolutely needs in order to live moment by moment -the pain has become so great. Unfortunately the hour in the chamber was excruciating for Terence since he can't lay flat or barely sit up- so it wasn't a pleasant nap session like I hoped.   I think he's going to give it a couple of times a week, for a month and see how he feels.  

This week, he's met with our hospice nurse, massage therapist and physical therapist (they all come to our home) -we're also scheduling a nephrostomy procedure (having the kidney by pass removed and a new one put in- should be done every 3-4 months)- and also planning ahead medically with hospice our trip home to Hawai'i this September.  It's taking a team to make that work- more than just packing our bags for a ride on a jet plane :)

Until I blog again,

Sherry

Happy Father's day Terence!

Father's Day 2012
by sherry

Our first father's day together was almost 24 years ago.   Terence married "us" when he was barely 26 and I was 29, with three children.  He thought long and hard before he asked me to marry him because he knew I couldn't have anymore children. That is a BIG decision for a 26 year old young man. 

His first Father's day present was a gun cabinet.  I don't think he necessarily wanted one, but having kids meant locking up the hunting stuff.

He has spent the last several decades raising the children with me.  He has honored their father Danny (my ex- husband) all the while carving out a special place in their hearts as their "Pop". 

He has been there with me through-out all the parenting ups and downs; when our daughter wanted her first boyfriend and we said "No"/ teaching Eric how to pitch at just 6 years old (and when the time came that  Eric's fast ball was to fast Terence admitted he was too wary to catch for him anymore)/ teaching Andrew how to tie his shoes/ he sat with Eric and taught him how to read the summer before he started kindergarten (at Eric's request)/ grounded Nadine (at 10) for eating her all of softball fundraiser candy/ joined Andrew in the elementary school lunch room 1x month/ sat at the dining room table with all three children helping them with their homework every night (believing that their study skills  for college were formed by fourth grade).

He took their "first day of school" pictures every year.  He started each school year telling the children "you start this year with an 'A' and proceed from there.  You don't need to battle your way up".

Now we have grand kids.  He teaches them not to be afraid of the dark (takes them out for night walks with flash lights).  He teaches them how to read a 'trail', how to cross a river on foot, How to identify different kinds of 'poop' (rabbit, raccoon, deer), how to make Robin Hood Swords (to battle the evil prince John) and taught them all about wolves in Wyoming. They think  he's a cool grandpa.

Most importantly he has taught the children (kids and grand kids) "to love the Lord, don't let your faith falter even when things look (and feel dreary)" and reminds them daily "that no matter what happens continue to follow Jesus, don't lose your faith and remember that He loves you... otherwise all that I've taught you has been in vain".

Father's day 2009, when Terence was diagnosed.

Days like today are easy.

June 16 2012
by sherry

We had a summer day today!  Besides a 70 degree day, our grand daughter Annie came and spent the day with Terence and I- she always brings us such joy (as they all do)- but since she's the baby of the family, we're enjoying her at this wonderful age of three. 

She spent about 20 minutes doing her "homework" with Terence. Counting to 23 and then some... I was busy working in the yard, but I could hear some hearty laughter coming from Terence as he conversed with Annie.  She keeps us in a happy mode!

 Terence has been doing relatively well.....he had spent most of last week in tremendous pain (a constant 7), but his hospice doc. recently quadrupled his morphine dosages- so yesterday and today his pain levels were lower....he's been sleepier, but in less pain.

 He was able to join Annie and I outside and even helped me with a gardening project that has been taking me over a week to complete (moving lots of rocks from a rock bed).  He said it's been painful watching me load the rocks bucket by bucket (all I wanted to handle!)- instead of shoveling and loading by the cart full.  He got the shovel out and loaded three cart fulls and got the project done (I was anticipating another three-four days according to my bucket schedule)!------LOL. I miss my 'yard man'.

 Of course, we got the project done, but he's down for the count as I type!

Over all, we three enjoyed the day. Got some sun, moved some rocks, planted some grass and rolled in the grass.

Anna: Showing me her 'button' bracelet that she made. 
"This is Papi's cancer bracelet"......not sure what made it a cancer bracelet, other than she was thinking about him.

Too cute.  Days like today are easy.

Where Terence put his efforts

June 13, 2012
by sherry

Today was a pretty decent day.  Terence actually joined me in the patio this morning for coffee,  (we've always cherished our coffee time in the mornings).  After coffee, his day really started: his masseuse came by for an hour (or so) and worked on him-which makes it so the lymph edema is manageable, followed by a visit from Randy (his physical therapist).

 Terence did really well- they worked on basic exercises to regain his strength.  By 3 PM he was absolutely exhausted!!! So much energy exerted for therapy!

I don't think many people realize what kind of energy it takes him on a day-to-day basis;  if he is planing any kind of "event" such as running and errand i.e. mail drop/bank/lunch,  he has to reserve his strength for the simplest things.  And if we're planning on seeing our grand kids, that takes extra energy!!!!!!  Which means at home he is doing the bare minimum...personal care only.  In fact most days his main efforts are put towards personal care. 

Every day is a new battle.  He attempts to face a new day with a new song- otherwise the daily battle becomes wearisome.  He places much emphasis of his days on his spiritual journey.

Terence and our youngest son Andrew and our daughter in-law Callie.

"For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms".
   -- Ephesians 6:12
     
 We face a daily battles, we have a real foe whose desire for us is our destruction. But, our foe has already been defeated and his angels stand rebuked. So, we keep our spiritual vigor knowing that
we're not playing church but fighting for the Kingdom.

PRAYER:
  Almighty and Victorious King, I praise you for conquering sin and death for us by your grace.  Thank you, in Jesus' name. Amen.

My favorite blogger

Sunday, June 10, 2012
by sherry

   David's Prayer (also public blog, Psalm 5:1-3)

"Give ear to my words, O LORD, consider my sighing.  

 Listen to my cry for help, my King and my God, for to you I pray. 

Morning by morning, O LORD, you hear my voice;  

 morning by morning I lay my requests before you and wait in expectation"

King David is my personal and favorite 'blogger';  he was crying "for help" through numerous "requests", and it seems that his problem is on-going because offers his prayer "morning by morning".

His prayer consists of three requests: "Give ear to my words", "consider my sighing", and "listen to my cry".  In these three requests, David uses three styles of communication: his "words", his "sighing", and his "cry":

Our "words" are usually reasoned, well thought-out expression and petitions to God.

Our "sighing" There are times, especially in times of trouble, when we are at a loss of words, we cannot even express our prayers. We have reasoned through our petitions, we have stated with words the result of our reasoning, then we run out of words. I am told (medically) that sighing is due to

shallow breathing (usually caused by anxiety) that's why deep breathing and meditation help; it calms you spirit and your body.  I catch myself sighing a lot.

Finally, David prays with a "cry".  David not only communicated through reasoned requests, and sighings, but also with emotive cries. Our emotions are an expression of our desire; they communicate the seriousness of your request.  Christ is our example in this: "For Jesus during his earthly life offered up prayers and entreaties, crying aloud and weeping as He pleaded with Him who was able to bring Him in safety out of death, and He was delivered from the terror from which He shrank".  (Heb. 5:7).  

There is nothing  disreputable in tears and no one should

 be ashamed to weep. The fact that the Son of God wept is a full demonstration that it is not disgraceful to weep. God has so made us as to express ourselves by tears. 'Religion' should not make the heart insensible and hard as stoical philosophy does; it makes it tender and susceptible to impression.

It's Sunday today.  Terence and I are pastors yet this morning he is not well enough to minister.

So, I thought I'd minister these word to ourselves and hopefully they will help you too;

"I am glad to know that the Lord hears our prayers, listens to our cries, and considers our sighs  (anxieties)".

Putting on my happy face

Putting on my happy face

6-9-12 

by sherry                                                                                                                                           

Sometimes I wish I could be like Jane Jetson who adorned her "morning mask" (she used it when she skyped in the mornings!)- oh how wonderful that would be! Oh wait!  How convenient that I have a cut out of one of my Facebook profile pictures!

Honestly though, some days it's truly difficult to put that happy face on. This past week has been "one of those days".  Anxiety snuck in and I became overwhelmed by the simplest things-laundry, mail, dishes.... not to mention helping Terence with his daily routine-but more than anything watching him try to overcome pain that had been engulfing him for days. It's overwhelming to watch him struggle like that and not be able to physically do anything for him.  It got to the point it was so bad (poor Terence!) that I could not bear to see him like that- I couldn't even look at Terence or be around him-  once when he was trying to tell me and show where his pains were, I was so overwhelmed that I threw a blanket over my face- I felt like I couldn't  take it any more. I didn't mean to block him out, I just needed a break from his pain!!!  (I know that sounds odd because he's the one in pain!).

Today (Saturday)- he's jacked up (or down?) on morphine- he hasn't been able to shake off the pain.  I haven't been able to shake off the anxiety.  I prayed for him while I was mowing the lawn. I prayed for him when I helped him in the shower. I prayed for him while making his lunch. I prayed, prayed, prayed. And then I got angry, irritated and frustrated that I still had the dishes, laundry  and dinner to take care of when I finished the lawn and to top it off, he was still in pain!  I could not find my happy place.  I had no happy face, except the cut out facebook profile- and though that may work for Jane Jetson, I didn't think that one would fool Terence or anyone else.

My sister in law (Mona) reminded me today that we need to use the word "joy" more often.  I thought about it and she's right.  Joy is not the same as happiness. True joy is attained by the Lord and it gives us an overwhelming sense of comfort and contentment that floods our soul. Happiness is based on our circumstances.        My circumstances are not very favorable right now nor are they very fun so I haven't been too happy (hence the need for the happy face).  But joy?  I can find joy in our tribulation because the God of Hope can fill me with joy.

Romans 15:13
Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.

 I continue to pray for Terence  (I will never stop), but I will also ask the Lord to fill our hearts with joy and peace as we continue to believe for a miracle-----so we can abound in hope!

                                 ♪♫♪ I’ve got that joy, joy, joy, joy down in my heart … ♪♫♫

Jesus, take the wheel.....please!

“Jesus Take the wheel” please!

 June 5, 2012

by terence

Not many things scare me.  I’ve been through three years of poking and prodding, transfusions and chemo as well as a plethora of so many other procedures that are not so pleasant.  Renal failure was close and quite frankly having a urologist surgeon shove a catheter up my troubled urethra was traumatic and emotional- but never have I been fearful. Until recently.

Last Saturday was Gig Harbor’s Maritime festival.  Our grandchildren were in the parade and had a booth so Sherry and I were determined to attend regardless of how I was feeling.

Here I am safely parked and enjoying my lemonade.

Let me start the story by admitting that we are wheel chair ‘virgins’- not having any experience outside of hospital facilities where everything is flat and wheel chair friendly.   This community event was big enough to where I couldn’t walk so Sherry would need to wheel me around. 
We located a parking space. Since all roads were closed for the parade we parked several blocks away... only then realizing the festival was ‘slightly’ down hill.

I got into the wheel chair while Sherry prepared man the reigns…. I surveyed the road ahead and it looked  it was going to be a carnival ride/obstacle course. Only then did I briefly wonder about Sherry's "driver personality".  Sherry, not aware of my “reluctance” was busy navigating  the hill, people on the left and right and a large storm drain dead center on the sidewalk.  She maneuvered to the left but not far enough, leaving me to have to slump down in the chair and push my foot down on the grate to avoid a major spill (no seat belts in this thing).

Sherry (still not aware of my dilemma), continued to traverse the sidewalk and people defending herself against my ‘backseat’ driving.  My heart was racing…I was sure I’d be facing a painful topple or worse, attached to a run away wheel chair.

Fear had definitely set in and I quickly managed to locate the brakes on the wheel chair and began to ‘help’ Sherry on this downhill obstacle course. Once she realized I was using the brakes she  felt I was counter acting her attempts to safely drive the wheel chair  and ‘told me so’ (!).

 The closer we got to the pavilion the thicker the populace became and my voice grew louder  because  Sherry was busy zigging and zagging  trying to find her way through the crowd, jarring my back eventually colliding with a little boy  (unbeknownst to her) who was attempting to buy a snow cone.  Moving on and passing the Navajo Taco stand Sherry’s voice became louder than mine as she attempted to tell me to “relax, and stop telling me how to drive this thing!”.  

At this point a beautiful golden retriever appeared who was faithfully following his owner...I envisioned the wheel chair taking him out so I firmly and appropriately used the only appendage available to me and stuck my foot out and kicked the dog out of my way hoping to avoid a full on ‘collision’ all the while Sherry still telling me not to worry because  she had 

“everything under control”.

Finally we made it to the giant pirate ship where our grand kids were anxiously waiting. They ran off to discover the wonders of a maritime day while I sipped my fresh lemonade content to be ‘parked’ under a tree.

Sherry made it through the adventure with a strained back still completely unaware of the little “fender benders” and I came away with a lesson of overcoming fear; not of cancer, but of a feeling of loss of control!

“For God gave us a spirit not of fear but of power and love and a sound mind” 2 Timonthy 1:7