Saturday, December 31, 2011

Blog entry on this final morning of 2011

A rainy day down town Seattle

We began 2011 with God and He's seen us through the end of the year.

by sherry

It's raining downtown-actually, it's been raining all week. This is Seattle. 

The reality of Seattle: It rains here!  At first glance, it could seem depressing, but this is Seattle so anything less than rain would make it so that we wouldn't have the beautiful green trees, wild ferns and rain forests as well as Orca whales, and playful seals winding though the many water ways here, year 'round.

 This blog is about realities.

The realities as I know it for 2011 were cancer, heartache and uncertainty.  People have asked me "how do you do it"? or made comments that we are so strong, but the reality of that is we have two choices, 1) grow up or 2) grow away.  You just have to trust the Lord. 

 2012 is beginning with the reality that life is uncertain.  My children will begin their new year flying out to Guam to attend the funeral of their grandmother, whom they love and will miss very much.  What will life be like with out grandma? Terence will start the new year in the chemotherapy unit.  What lies ahead for Terence and our family?

The truth of the matter is God is the Alpha and Omega, the beginning and end (Revelation 1:8).

We began 2011 with God and He's seen us through the end of the year.  From beginning to end, our God has always been here!

What can change this one undeniable realityWe belong to the God- who is always here, who always cares for us. No matter what happens to us tomorrow, or the next day, or the one after that, our destiny lies with the God who stretches from beginning to end and who secures for us life that never ends.

Though our realities may be uncertain and unpleasant, the undeniable reality is that the Lord is always here, so what is there for us to fear? 

  Father God, thank you for the blessings of 2011.
Inspire my confidence about our future for us and fill me with joy because of your salvation. 

And for tomorrow, and another new day and another new year, in 2012 we await with
anticipation and gladness for we know that
we belong to you, and are always here and always

care for us.  In Jesus' name I pray. Amen.

Friday, December 23, 2011

A Leukopenic Christmas

Chemo cycle three, day 54
 by sherry

On Wednesday, Terence and I spent the day downtown Seattle to get his weekly blood draw and dressing changed on his PICC line.  His blood tests came back showing severely low counts, needing a blood transfusion.  Because of the chemotherapy, his body is having difficulty producing enough healthy red blood cells to carry oxygen to the tissues and organs.

A blood transfusion for anemia gave Terence a rapid infusion of needed red blood cells, allowing him  to feel better much more quickly than with iron supplements, etc.

During the blood transfusion, a small needle was used to insert in his PICC line. Through this line,  he received healthy blood (the procedure usually takes 1 to 5 hours, depending on how much blood you need) Terence's infusion took about 5 hours, it was done on an outpatient basis.

Saved by the blood.
Terence's friend Sam Chance came by and sat with him during the transfusion, I took a short nap and ran down to the cafeteria and grabbed a chicken salad sandwich.  The five hours past pretty quickly and we headed home. Terence slept all the way home and the next day. By today (3 days later), he feels much better.

He was given doctors orders to stay completely away from crowds (no Christmas shopping, movie theatres, etc) because his white blood cell count (WBC) was barley at a 2 (the average WBC is 4-10).

Leukopenia occurs when the WBC falls below 4,000.  Making him prone to viral infections and overwhelming bacterial infections, (patients with severe leukopenia should be protected from anything that interrupts skin integrity, placing them at risk for an infection that they do not have enough white blood cells to fight).

Christmas eve and morning celebrations may be somewhat limited- the doc says he can be around the grand kids if every one sanitizes and "masks up".  Oh, well, that's how one spends Christmas with Leukopenia- masked.

On the last chemo video I shared that Terence was being tested for a UTI because of pain and difficulty urinating (again)- well, the test came back negative, so the problem is mostly likely due to cancer progression.  He has scans due January 3oth, and a minimum of one more cycle of chemo (if his blood tests come back next week revealing the same problems, chemo will be delayed until he is strong again).

Ps 103:1-5
"Bless the LORD, O my soul: and all that is within me, bless his holy name. Bless the LORD, O my soul, and forget not all his benefits: Who forgives all our iniquities; who heals all our diseases; Who redeems our life from destruction; who crowns us with lovingkindness and tender mercies; Who satisfies our mouth with good things; so that our youth is renewed like the eagle's" 

Merry Christmas to all of our friends and family! 

Friday, December 16, 2011

The best Christmas present I've ever received was a lesson.

The best Christmas present I've ever received was a lesson: save your energy for what really counts.
by sherry

One of the most important things that we have gained from our cancer experience is appreciation of what is really important in our lives and what is just fluffy stuff.

Guess what? In the grand scheme of things, most of what we care about is just fluff. Why is this important to recognize?
 Because we have less energy than we are used to having and we need to be extra careful how we use it.  When we wake up in the morning we only have so much energy to get us through the day; each time you use some of that energy it is spent, gone, never to be recovered.

Patients and caregivers alike are obviously under tremendous stress and have more to worry about and more to do than ever, so why waste any of that precious energy on fluff when there are so many truly important things to care about?

First family (dys) function after cancer diagnoses.
The first Thanksgiving after Terence was diagnosed with cancer was our very first family (dys) "function".   Behind the pretty picture, we were all  privately irritated at how the other was choosing to handle (or not handle) Pop's 'terminal diagnoses', but it we were clearly showing it in the small stuff: how the turkey was cooked (or in our case, not cooked- the power went out in our family vacation home); "so & so didn't even wake up and help clean the mess when the ceiling collapsed in the middle of the dinning room in the middle of the night!" (there was a HUGE rain storm roaring outside- the area was flooding) and finally, the basic grouchy-ness of not being able to take a shower on Thanksgiving morning (the water is powered by an electric pump). Not to mention, how we're going to get a 29 pound turkey done by dinner time, with no power, no water? (my brother-in-law knew how, but he was in Hawaii).

Personal offenses were flying (in our minds only. Our family has never been vocal enough to yell them at each other (until that day) we've always just talked things out when things have bothered us).
In the end, I found myself shouting at my adult kids, "Pop is dying, and you're carrying an offense because you were asked to sweep the floor, REALLY????? Someone just sweep the damn floor!" (I personally wasted so much energy that day!).

In the midst of cancer (or any other illness or crises) isn't that just fluffy stuff?

Why waste physical and emotional energy on it? You’re going to need that same energy later.

Ignore it and save some of that energy where it counts.

Why bother harboring an offense? It takes way to much energy to continue to feed it as opposed to forgive and move on. Love doesn't keep a record, so get over it.

The next day Terence calls a family meeting.  My older sister (being the peacemaker and fixer--- she does it for a living- she helps businesses figure out how to change themselves and become more productive); she takes out the dry erase board and writes: "The new Normal"- and we talked about how we as a family can adjust to Pop's diagnoses in a healthy way.

'Dys' function became a fun tradition.
We are learning to give each other the freedom to deal with the crises individually, and be okay with it)- so we made fun of ourselves the next Christmas (see picture at right), our ugly sweater Christmas eve is how we chose to deal with the new normal of cancer stresses during the holidays. Chill out.  Laugh at yourself.  Stop keeping score.

I have to be on guard for energy thief's—those things that might make me mad or cause a fight or other unpleasantness which, in reality, just don’t matter- there are BIGGER things in life that matter.  Helping someone in need.  Spending time with someone who has no one.  Health. Life. Your family.

That’s why I say: choose our battles and spend your energy on things that matter. That’s right… we can choose. 

Tuesday, December 13, 2011

Times in the unit

December 13, 2011

So, we live once a week in the “Chemo Club Lounge”.  
While Terence received his third dose of chemotherapy, I kept myself busy video taping and reading :

Monday, December 12, 2011

What pushes me out of bed even on mornings that prophesies a cold day ahead?

Cycle two/ day 41 of chemo
 sherry & terence

by sherry: 

Today is Sunday- a day of fellowship with believers.  Being pastors, we don't miss many days and today was no exception.  In fact, since Terence's diagnoses, he has only missed one day due to sickness. It's not an "attendance" thing, it's a "passion" thing.  He has such a deep passion to preach the word that he refuses to miss a day (that day came just a few days prior to his chemo therapy session).

The PICC line stays in his arm, semi permanently  
He shared the word today, a great word in fact, and loved the fellowship.  Unbeknownst to anyone in the room, he was in great discomfort.  By the time we made it home, he took his shower and readied himself for bed.

  He wasn't running a fever thank goodness,  but his bladder is causing some pain; he is having to self catheterize 2x day now, because his bladder isn't emptying itself.  He is retaining up to 1,000 cc's a day now.  It's pretty painful.  We have to watch for any type of urinary tract infection (which he is susceptible to any type of infection with low blood cell counts). He deals with the pain of it in general- on top of any other cancer related pain...which when added one on top of the other, makes him even more tired.

After church and just two days before his next chemo infusion he found himself feeling severely nauseated. I couldn't even talk about food, it made him sick. He was tired and in pain.  This seems to be a pattern every time he rounds the corner for the next treatment. I wonder if it is the cycle in which the chemo works, I'm not sure.  As he tucked himself into bed, he was shaking- the pain was so bad (see his pain chart below. We have to use smiley faces, in order for him to relate honestly to his pain levels!)

by Terence:
I had a great day ministering the word at fellowship today. It strengthens my spirit and enables me to face the day with much anticipation.  It also helps to be sitting when I preach! 
Having a positive attitude, and hope in God lifts my spirit and pushes me out of bed even on mornings that prophesies a cold day ahead (but sometimes it’s okay to stay beneath the covers, which I hope to do on Wednesday morning, the day after my treatment).

When things seem tough, as they sometimes do
when the road you’re trudging seems all uphill, 
rest if you must, but don’t you quit.

So for all of you who can’t manage to find hope today, I hope that knowing that you are not alone provides comfort and reassurance that others may feel the same sense of weakness.  Sherry and I send you love, and hope you will send out your love as well. I wish you comfort from within, from knowing that love, and how it spiritually incarnates in your life- knowing that the Lord, your comforter will ultimately lift, carry and heal you. 

Sherry & Terence

Friday, December 9, 2011

He likes Jughead Jones

Terence, December 9, 2011
Cycle 2/day 38 of chemo
by sherry

Terence is rounding the corner and preparing for another chemo round in just 4 days- he's feeling strong right now but preparing for the first 48 hours; the *chemo wam-bam*, which hits him after the infusion- and typically leaves him on the couch or in bed, unable to keep his eyes open- the faitgue is so great at that time.

 Right now though his blood counts are up and he has more energy.  He woke up feeling good, ready to assist the move to our condo. Travis and Stacy came down from Seattle and our son-in-law Mike moved our refrigerator(s)- some of the heavier stuff.  After that, Terence was spent-came home and had to take his evening morphine and spent the evening with me relaxing.

Even though he has been experiencing new and unexplainable pain, he remains strong in spirit and happy, in general. There isn't a day that goes by where he knows that the Lord is with him; of these things he's certain.  New pains, new side effects, new symptoms manifest just about every day so it would be easy for him to focus on those things, but he doesn't sulk or feel sorry for himself, he often takes his cue from Job who says "shall I praise God in only the good times? He's worthy of my praise at all times".  He's pretty consistent. 

Getting ready for Christmas this year-we don't have much- the medical community has claimed ownership of our $ in exchange for their care of Terence!  We are grateful for the excellent care he's getting, and we haven't really put much thought to it. Just getting through the chemo days takes our energy and focus, and we've been really grateful, once again to have our entire family with us during the holidays. I did put our tree up and it fills our home with the wonderful aroma that reminds us it's Christmas.

Before I forget, if anyone is interested in sending terence a care package for his chemo/post chemo treatments see below:

      He's a hug fan of           Jughead Jones comics!

Have a good laugh at that, and talk to you all soon.

Thursday, December 8, 2011

Living with a preacher.......

Cycle 2/day 38 of chemo
By sherry

I got up pretty grouchy today. Some days I open my eye after a peaceful night's sleep and then remember "....cancer". Ugh. Those days make tough mornings.
Terence and I always have our coffee in front of the fireplace the living room and talk about what we believe the Lord is doing in our life, then we talk about or hopes and then deliberate a plan for the day, based on how he is feeling.

Well, today he wasn't feeling very well. Still having some pain and feeling a little weak and tired. After we talked, he needed to lay down and take a mid morning nap, which left me feeling a little pressured to get stuff done around here. I posted on my FB page the moment I was faced with the temptation with being really sad (lonely) or mad (irritated that I am left with the burden of things).

Terence had noticed during our coffee time, at first my sullenness and then my irritability. So before he left for his power nap, he 'encouraged' me with this:

T encouraging me today.

 "Sherry, why are you looking at your life and wondering if God hears you?  You feel like giving up because living life seems harder than you thought?  You're not alone! I experience the same, but there is encouragement!
God is faithful!"
 “God is faithful, by whom ye were called unto the fellowship of his Son Jesus Christ our Lord” (1 Corinthians 1:9).
He kissed my head (Terence, not God)  and went and took a nap.  At first I started to get mad (because I felt burdened, overwhelmed & left alone), then really lonely and sad.

I knew Terence was right. I can't make it through this
time in my life without remembering that God hears me and that He is faithful. I turned to the book of Nehemiah to encourage myself and found;"...and do not be grieved, for the joy of the LORD is your strength..."(Neh. 8:9).

Annie, 3 years old.
So I got up, got dressed and started packing up a few boxes and called my daughter Nadine and asked if I could pick up my little Annie bug- I figured she could keep me company un-packing at the new house. 

Jeez, the joy of the Lord filled my heart as she sat in the back seat of my car telling me the funniest stories from her little car seat!

Story 1: "Hey Mamai, I saw Santa Clause at the club (YMCA) today". Me: really? Did you tell him what you want for Christmas?" Annie: "no, he just waved so I waved back. He was busy working out because he's fat"

Story 2: " Where's Papi? I can smell him- he must be somewhere, are you hiding him? Is this a surprise?"

Story #3 "If Papi gets a hippopatamus for Christmas where will it sleep? Cead (our lab) won't share  her bed! So maybe he can spend the night at my house?  And "she" can be a ballet dancer- oh! she can borrow one of my tuu tuu's".

Story #4   (Looking at Terence's stuffed pheasant packed in box)"Is this bird alive?"
                 Me: no, it's stuffed, like a statue"
                 Annie: "why is it stuffed?"
                 Me: "because Papi shot it"
                 Annie: "why did Papi shoot it?"
                 Me: "because he's a hunter".
                 Annie: (quiet)...... "I'll call her Tizzy  (turns to yell at the bird)- 'If you can hear me; 
                 hi Tizzy, sorry you're dead!"

I laughed and laughed all the way to the new house.  What a joy.  I found new strength to face the day, overcome sadness and madness and enjoy my kids, grand kids, my husband, and yes, even moving turned out to be a joyful event!

Living above cancer is not denying it.

But by the grace of God, we can defy it's devastating effect on our lives.

His grace visited me today (Annie!), filled my heart with joy and strengthened me tremendously!


Saturday, December 3, 2011

Prayer Rock with Bella

Terence & our grand daughter Bella, Summer 2011


Ever since Bella was an infant carried in a back pack, she and Terence have
trekked to a prayer rock up near Mount Rainier.

Actually, it's a cluster of rocks located at a waterfall about 2 miles from the cabin my
grandfather Horace Parker built in Washington (my own father has told me many 
stories of his hikes to the same water fall as a young boy).

We've taken many holidays there with our family. 
Once when she was barley two years old she was up early in the morning making plans for their hike.  "C'mon Papi! let's hike to our prayer rock"! And hike she would!
At two, she ran beside Terence the entire way up and back- 
actually anticipating their prayer time up at the waterfall. 

Once on the rock, they would sit or kneel and pray conversationally  instead of
saying a rote or formal prayer and he would teach her to speak to God as a friend, using simple, conversational language that she could relate too, guiding her into a closer relationship with her heavenly Father and an into an invaluable source
of help and grace for the rest of her life.

Now she's 9 years old and she still anticipates this hike and special time spent with her Papi. 

This summer was a little different though; she requested to lead the prayer time.  

She prayed for Terence to be well, that was first and foremost on her mind.
In fact, that was her sole purpose that day; to get to the prayer rock with 
Terence and pray for his healing.
Then she prayed for her mom and dad, her brother
and sister, her cousins, aunts and uncles, friends.

I don't suppose my grand father knew 90 years ago when he chose this spot that it would one day be an inspirational place that would stir the heart of his great, great grand daughter Isabelle (Parker) Jensen.


Thursday, December 1, 2011

Who wants to LIVE on chemo? "Not me", says T

Cycle 2, day 8 of chemo
by sherry

Yesterday we went in to have Terence's PICC line flushed (a weekly event now), and to meet with his oncologist Dr. Montogomery to review how chemo is working; he also received his 12 week Lupron injection (for you PCa'ers: yup, he's still getting it even though he's hormone resistant).
Annie checks out the chunk of hair from Terence's head!

His PICC line is doing good; (that's the peripherally inserted central catheter. It is a tube that is inserted into vein in his upper arm, and advances until the catheter tip goes  in a large vein near his heart to obtain intravenous access.  If he's too active with that arm, it could pull out and they'll need to ex-ray it prior to the next chemo). I asked about surgically placing a port in his chest, but Dr M. said UW standard is the PICC line in the arm. It's a daily hassle (needs to remain sterile) but it has the least amount of serious & permanent side effects if there is an infection.

His Blood counts were good- exactly where they need to be on day 8. Decently low WBC/RBC & that means the chemo is in killing mode!  He has a lot more nausea this round, so they changed his nausea medication, hopefully it will work. He's lost 10 pounds since chemo started.  Not a bad thing.

Dr. M's main determination as to whether the chemo is 'working' is based on the decreased level of Terence's pain  (he has had no cancer related pain since he started chemo).  One concern is that Terence started having to catheterize every day (again) - which is an indicator that the cancerous tissue that was removed during surgery Oct. 4 has grown back).  Dr. M wants to give chemo more time he thinks it will have an effect on it.

So yesterday's decision is that the chemo is most likely working and that he should stay on chemo for an indefinite amount of time (i.e. as longs as it seems to be "working").

Here's the definition of "working"-
1. for as long as he can tolerate it (the side
   effects of chemo),
2. As long as it continues to decrease the
    cancer related pain,
3. As long as he can continue to keep cathing
    at a minimum.

Dr. M. is hoping that Terence can continue to tolerate chemo at least 3-4 more months because he is the Principle investigator for a new clinical trial involving Abiraterone (A.K.A. Zytiga- the drug that was recently FDA approved for post chemo treatment but cost $5 K month).  He is running a new trial to see Abiraterone's effect on tissue and Dr. M feels that it would be good to get Terence on it because the timing for post chemo may perfect, and it will be free.

Hairless in Seattle!
We'll see what happens. But if the chemo is still working, Dr. M wants him to stay on it as long as possible (he has one patient that has been on it for 22 months). That means if Terence is doing well on chemo Dr. M. probably won't even try to enroll him on the trial because T can go on Zytiga at anytime (it just won't be free).

Looking at being on chemo for an indefinite amount of time certainly is daunting- it has it's pros and cons.  
The pros are obvious: staying alive longer and being pain-free. The cons?  Living on chemo, (certainly not a lifestyle of choice)!

Any ways- the good news is that other than having cancer, Terence is really healthy!  

Still praying for that miracle though.  
Who wants to LIVE on chemo?  "Not Me", says T.

P.S. Thanks to Kelsey & Collin, Travis & Stacy for sending Terence those awesome Cowboy Joe beanies!