"Happy holidays" is not something taken lightly for us.

Our "National Lampoon" /ugly sweater Christmas eve!

The saying "Happy holidays" is not something we take lightly.

We had a  great holiday- kept celebrations  easy/breezy. Humor being at the heart of our family celebrations these days.  

This time last year, we didn't know what to expect.  It wasn't very a very happy holiday (although we tried). We still don't know what's a head, but this year we're happy.  In the midst of very serious circumstances, we are finding that being light hearted  is helping us maintain some sanity and regain some happiness of the day.

New things-   Terence has had some memory lapses and confusion-


It can get a little frustrating and hard for me....my personality type I think. But I am trying!!!.

Typical conversation:
S- Have you seen the remote control?
T- Oh yeah right over there.
S- Here? really? Where? (looking, looking, looking), it;s not here....
T- Oh, I thought you were looking for your phone .  Here is  your phone.
S- Thanks but I don't need my phone right now; do you know where the remote is?
T - oh that. It's over there . 
S-Where, there? (looking, looking, looking).
T- Oh, no, I guess not.  I thought it was. Hmmm... Maybe not. I guess not.  I saw right here.
    Here is your phone though.
S- Nooo, didn't ask for the phone...
T- Really? I thought you did.
S- Nooooooo. I ASKED if you knew where the remote was. It was right here about an hour ago,
     in the drawer, where it's supposed tom be. Where did it go?
T- I don't know. Haven't seen it for about an hour.
S- (After a few more rounds I am frustrated and I give up and go to laundry room to start the  
      washer.... and I  find t remote control there).
S- What's the remote doing in here?
T- Oh the remote? I was changing the batteries about an hour ago. It needed new batteries. 
S- Why didn't you tell me that when I was running around looking for it?
T- Didn't think of it.
S-WHAT DO YOU MEAN YOU DIDN'T THINK OF IT? ..................!!!!!!!!!!!!!!!!

And that's just the remote!!!!!

(Up date, January 7, 2011: We've recently found out the changes in his cognitive behavior was negative side effect between Ketoconazole and one of is other drugs!!   We have since made the necessary adjustments- so he'ss getting better every day).


Sherry
:D 

Week three on this new treatment

Grand kids inspecting the presents!

Week three on this new treatment is leaving  me feeling  tired and fatigued; running a fever with chills, dizzy, nauseated and having some memory loss and confusion  (so says Sherry; I have recollection of memory loss!).

My next oncology appointment is December 29^th-and hopefully  we'll find  the treatment is lowering my PSA   (last test showed my PSA had risen from 53 to 143 in 2 weeks)!

Meanhwile………

I love Christmas!  We love decorating and wrapping presents, listening to Christmas music and drinking eggnog!  My favorite thing to do is shop for small stocking stuffers.  Sherry really inspires my joy in Christmas — I don’t know anyone that owns the amount of decorations she does or who put them up so early or leaves them up so late. When our kids were little, every room would be decorated and she would fill up our living room with  presents~  she didn’t buy expensive gifts, but would create home made gifts and buy small things....but there would get a lot for the kids because she loves to watch them open them.

This year, we’ve scaled down on the decorations and got a small tree due to the fact that I haven’t been feeling well.  Sherry thought that pulling all her decorations out of storage was too much work for her at the moment.  And I agree.   A scaled down Christmas is not a bad thing.  We also decided to forgo presents for one another and donate to another family.  That  was a great idea!

This will be our second Christmas as a family living with cancer but we haven’t let it spoil any of our celebrations and are even coming up with some new traditions.  In fact, this year we are rarely thinking about the disease — we are too busy enjoying our family time together!

I have so much to be thankful for: Andrew surprised us tonight by coming home early, and Eric is home on leave, so we’ll have our entire family together on Christmas day!

May your heart and home be filled with the joy of Jesus this Christmas~ as mine is!

Terence

First today, then tomorrow

Handing out presents this morning.

Today was a terrific day. We were up and at'em and out the door ready to minister. Terence gave presents to all the kids this morning.  He enjoyed picking out little toys for all the kids.  We did have a long day (and late night); he came home feeling tired  but  it was worth it.

Terence has been feeling a little on the yucky side, but over all anything is better than  TOK-001!  He is on the trial and error side in regards how to deal with pain, nausea, new side effects etc. We're finding that can be consuming.  It consumes ones energy~ both mental and physical so we're trying now days to just move forward. 

"First today, then tomorrow"  is our new motto!   Good words to live by.

I am finding that I have some new energy.  I think the clinical trial sapped me of a lot of my strength- the 'not knowing' and watching Terence get sicker and sicker was difficult.... so much uncertainty.  Not that today is any different.....but I seem to be a little stronger.  Must be answered prayers!

This is "Christmas week"! We are facing it with much more anticipation than last year!  A year has brought a little more maturity in the cancer arena: not as shocked and stunned as we were last year.  Still keeping everything really simple though.

Eric will be home on leave in a few days and our youngest son Andrew is also coming home from Korea! Our daughter-in-law Callie has a birthday this week and we will also be sharing the holidays with Jon, the kids' first cousin on the Duenas side. Full house- family, gotta love it.  We're spending Christmas-eve here with appetizers and stocking stuffers and Christmas morning will be at our daughter Nadine's house- she and her husband Mike have three kids, Bella, Ethan and Annie...our hearts joy especially during this time.

Thanks for all your prayers......they work! Thanks Lord!


Merry Christmas!


Sherry
December 19, 2010

 

It's only a word!

My thoughts & prayer

Terence's own body has turned against him.
Cancer. 

It is only a word!

But it is a weight pressing me down.
Help us not to fear.

Terence is more than this one word,
more this diagnosis and this set of symptoms. 

He is so much more. 

He is created in Your image Lord!

Medical update:

• Terence's PSA continuing to rise  (from 53 to 143 in 13 days), now triple time.
• His liver enzymes still high (his body still detoxing the trial drug)- but expected to go down soon.
•  He is able to manage body pain without morphine or methadone since stopping the clinical trial- hooray!
•  Started ketoconazole and prednisone this week in the attempt to knock down the PSA quickly and will stay on it as long as he can tolerate it and it continues to work.
• Next oncology appointment December 29th.

I've learned something about those who call themselves friends.

It's tough sometimes retiring      to bed at night feeling sick, followed by a morning of more of the same; body aches, various pain and relentless nausea.  However, through the last 16 months of battling a terminal disease, I have come to learn many things. 

I believe that most men live a lifetime not knowing how many friends they have or how much they are loved.  I realize that I am a blessed man; I know family and friends from my past not only remember me but consider me. 

I've learned something about those who call themselves friends.  True friendships no matter how old, never die. 

Thanks Teddy Callahan for staying in contact; Danny Rose for stories that make us both laugh and Ed Goetz and Chad Cheever for encouraging me. 

I guess friends and laughter 

are the best medicine!

Terence Luttrell

Thanksgiving Day comes

Thanksgiving Day comes, by statute, once a year;

 but to the honest man it comes as frequently 

as the heart of gratitude will allow.

We are very grateful for our friends and family:

for your prayers, support, gifts and most of all, 

for holding us in your heart during this time.

Happy Thanksgiving!

Love Terence & Sherry

When you are overwhelmed, remember: three is better than two.

When you are overwhelmed,

remember: three is better than two.

When Terence's father passed away, my mother passed away 2 days later. We understood the pain of losing a parent and we grieved in concert.  In 22 years of marriage, Terence & I have always understood the others’ pain and suffering and have been there for each other. 

That’s the power of two!

This week was heartrending and frustrating for me.  Terence was downcast.    

That may not seem like a big deal- 

but anyone who knows Terence knows that he is not a downhearted man. 

He is strong in spirit and a happy man. 

 But because he has been dealing with constant pain and systemic itching with little or no relief he reached a physical, mental and emotional peak.   

At his wits end; “How long, O’ Lord?  How long?” was his frustrated outcry.

For the first time, I realized that I didn't understand Terence’s pain, which left me unsure of how to help him. 

 I’ve never been on that peak; I’ve never had my mortality shoved in my face.  

 I looked into his face that was contorted by frustration.......... what should I do?

 

Periodically, I find myself at a loss of knowing what to do or how to respond. It's then that I call out to the Lord, and He gives me more than intelligence, ideas or good old common sense. He dips into His well of wisdom and allows me to drink from his cup.

So the Lord quietly reminded me of 4 things:

1.     Even if I don’t understand Terence’s pain and    suffering, God does,

2.     That even though we may be, He is never at       His wits end,

3.     He never leaves nor abandons Terence ,

4.     And finally, He reminded me of our wedding  
        vows: 

Ecclesiastes 4:9-12   “Two are better than one, for they can help each other succeed.  If one person falls, the other can reach out and help. But someone who falls alone is in real trouble”.

 “Likewise, two people lying close together can keep each other warm. But how can one be warm alone? “

 

“A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer”.

 “And three are even better, for a triple-braided cord is not easily broken”

Keep him warm?  Check.

Encourage him when he is down?  Check.

Be his loyal advocate in the oncology office or hospital?  Check!  (This means not allowing nurses to stick his arm 8 times. Sometimes this means I will have to keep his pain management diary because he can’t remember. Sometimes this means I need to run beside him when he’s running out of the Emergency room because “enough is enough!”  Check! Check! Check!).

 

But what about the things I can’t do? What do I do when things are beyond my ability to comfort him?

 The Lord reminded me that when Terence and I read our vows, we wisely braided a cord of three strands together as a symbol of inviting the Lord God himself into our marriage.  

That simply means:

When we are weak, He is our strength.
When we are afraid, He is here.
When we are sad, He is our joy.
When we are in despair, He is our hope.

When we’re alone, His presence stays.
When we don't understand, He is our Teacher.
When we hurt, He is our Healer.

My interpretation-
When we are clinging on, He is our Rock.
When we are overwhelmed, He is our Peace.
When we unsure, He is our Guide.
When life is too much, He is all we need.

  Two are better than one, but three is even better!

UNEXPECTED SIDE EFFECTS

UNEXPECTED  SIDE EFFECTS
By Sherry, November 13, 2010

The list of side effects for cancer treatments include common ones such as nausea, fatigue, headaches, insomnia, body aches, hot flashes -well let’s just stop there.  We were told about most of them, but there were some side effects no one mentioned.  These included a new appreciation for our family and friends, and a deep tenderness between Terence and I.  And new sense of gratefulness to God for the simplest of things!

Everyone has been fabulous; sending cards, gifts and encouraging emails.  But what astonished me was how we felt their prayers.  There are many times either Terence or I are awake in the middle of the night- just lying there.  He, suffering one of the many side effects and me, dealing with the uncertainties of tomorrow (sleep robbers/peace stealers).   The next day,  I would run into to someone and they would excitedly say, “I was praying for you last night when I got up to pee!”.

Ah.  The Powerful Pee Prayer!  Why this isn’t a chapter in  the many “how-to” prayer books, is beyond me.  That middle-of-the-night appeal whispered between getting out of and getting back into bed.  A prayer said while performing a humble bodily function; the opposite end of the spectrum from having an entire High Mass said for you.  I think Jesus likes this.  It’s totally up His alley, right up there with the manger and lowing cattle.  Ordinary.  Simple.  And powerful.

 Between nuclear hot flashes and systemic itching (for which Terence can find no relief), the yellowing of his skin and 4 hour naps (all of which are ‘in your face’ reminders-the cancer screams “I am here! I am here!”), we have no choice but to press in to Christ who is our Peace in the midst of  mayhem.

A sigh of relief comes over us when we remember how simple  it can all be.  Breathe in.  Breathe out.  Praise God.  Move on.  Pray while you pee.  He hears. 
A side effect commonly overlooked: SIMPLICITY.

 

MEDICAL UPDATE
Recent blood draws show continued strain on his liver.  Not necessarily alarming, however it is directly related to the experimental drug TOK-001.  And that has consequences.

Our last conversation with the clinical trial team was in regards to whether Terence can continue on the trial due to the strain on his liver.  Meanwhile, he is still on the same phase I dosage of 1,950 mg of TOK-001

until further notice.  I think one, two, three or four things will happen in the near future: (1) Dr. M and the TOKAI team will remove T from the trial due to danger to his liver, or (2) T will make the decision to get off of the trial- not willing for his liver to be compromised any further or (3) a miraculous healing will happen (we still believe in miracles people), and (4) the unexpected (not sure what it is).

Outside of TOK-001, there is no known treatment for Terence, but we will wait and see  what comes up the turnpike-  as usual, we are in the somewhat dreadful “wait and see” situation. All things out of our control.  But I am hoping that the delay in action will provide the opportunity for a miracle (miracles usually happen when we are waiting and looking the other way).

Medical schedule-
Nov.16- Pain management review
(T is allergic to all the approved opiods). Re-scheduled!

 Nov.17- Blood draws (local office).

 Nov. 29- New bone/CT/MRI scans (Seattle Cancer Care Alliance)-review of old tumors, on the
  lookout for anything new.

Nov. 30- Oncology appt.(University of Washington Urology oncology), TOK-001 review.

Thanks for your continued prayers and support!

~Sherry & Terence

Hawaii did us both good

I recently left the beaches and sunshine of Oahu in route for home in Seattle.  My city greeted me with rain and 56 degrees.  Sigh.  What a difference a 41/2 hour plane ride makes!

 Now I am at home, my Seahawks hoodie keeping me warm, reflecting the recent past.  Without a doubt the best moment in Hawaii was hearing Sherry laugh with her sisters as they recalled places and events while growing up.  And much more belly laughing ensued when her brothers Randy and Wayne added their stories to the mix.  It was good to see her happy.  She even danced the hula! - first time in years.

Hawaii did us both good:  rest, peace, diminished sense of responsibility.  We are consistently advised "not to worry", and "be not anxious", according to the Bible.  God obviously knows that mankind is prone to these issues, and that is why the topic is so clearly written in scripitures.

So, my course was set in the “Aloha state”-and with the help of O’hana (family) and the good Lord watching over me, my peace and rest began.  I awoke every morning to the waves breaking on the shore, my nephews encouraging me on a variety of outdoor pursuits and evenings filled with poi and lau-lau.

You know what?  I just feel better now.  My outlook is better, some strength has returned and I am spiritually strong.  My immediate future requires even more faith and physical strength and this trip reminded me that the Lord knows everything I need.

Terence

Mahalo

We arrived in Hawaii- after anticipating a great get away (which it is)- we spent the first few days with my family-  reunion time....brothers and father and nephews and sisters, cousins, nieces, beach time, surfing, snorkeling, hugs, kisses and tears filled our first three days. Wonderful!

Day four- found us at Castle Hospital- E.R.
Terence was presenting with some urinating urgencies(waking up 6x a night!). My nephew Noah took us to the E.R. where my sisters met us.  They cathed Terence, and consulted with his oncologist in Seattle.  It was determined that the new problems are due  to "tumor progresion"  (tumor is growing and obstructing the uretha).  Looks like a TURP surgery maybe in his future. Dr. M says that if Terence still has problems, we have to come home early.

After 4 hours, Terence left the E.R. (with out nurses aprroval- he had enough)- arms full of self cathing  supplies he walked out adamantly telling us to get the car- "I'm done. "Let's go watch Adam & Doug surf".
Walking briskly- almost a run so the nurses wouldn't catch him- he left us standing, wondering what was going on.  He was going to the beach, that was it!

He is doing better now. Still adamant, and determined to have a good time.  He is surrounded by my family- brothers, sisters, nephews- all determined to spend time with him and he with them.

 We are now in Ewa  beach- at a beach house my sister Brook arranged.   I woke up sick today. Tired, nauseated...slept for 2 hours on the beach. It's sort of typical of me...after spending several days on 'high alert' with Terence, I seem to have an adrenal 'let down' and I crash hard.  It doesn't take much to throw us into a tailspin. Cancer has a way of doing that: its not a respector of events- it doesn't matter if your on vacation or not.
 

Meanwhile-  tomorrow, cousins, sisters arriving to hang out with us. Saturday a BBQ with more family and friends! Sunday, Joan and Terry Butters will be joining us here for 1 week  and my nephews will be here to surf!

Family.  Friends. Good food.  Laughs. Hugs. Tears. Swimming.  Surfing. Snorkeling.  Healing times.

Mahalo!

Anchoring myself in hope.

Anchoring myself in hope.

This is technically Terence’s blogspot, but Terence & I do everything together, so he doesn’t think twice when I write.  So here I am. I love doing this.  Who doesn’t like to put their feelings to paper?  For me, it helps me cope.

So, here we are. Into week 2 into the extended Phase 1 TOK-001 trial.  So many new things to cope with.  For starters nausea has overcome Terence and it knocks him outa’ the game for an entire day.  He takes TOK-001 treatments daily, and now with his adjusted diet, his body is quickly absorbing the medicine (that’s good!) to the degree that it’s equivalent of increasing the dosage 10 fold! That’s huge.  No wonder he’s getting sick! Poor guy!

Our next step is to take Dr. M. up on his suggestion for a nausea prescription (Terence thought he didn’t need it).  At least maybe we can have dinner together again???

I think there are 2 types of cancer patients.  A victor and a victim.   Cancer victors face pain and  suffering even potential death  with a certain kind of confidence . Not arrogance, but a quiet  kind of confidence.

 That would be Terence.

 I think the secret to that is knowing how to cope with all of the emotions that accompany a cancer diagnosis.  Fear. Terror. Grief. Self pity. Guilt. Depression. Lonliness. Denial. Low self esteem.  

 Trust me, Terence & I deal with all of those emotions-sometimes on a daily basis, they come right out of thin air, like a gut punch- one after another.  These can be powerful emotions that can escalate into full blown panic if I don’t keep them in check and remind myself of the Hope we have in Christ.

I have to admit, I struggled sorely with this last week, and panic ran amuck.  That doesn’t happen very often in our house, but last Friday it certainly did.  Mind you, we have been dealing with advanced medical directives, legal medical issues & the uncertainty of a clinical trial and life and death itself.   My fearful thoughts ran unchecked and I became anxious about living without Terence.  Terence had left on a 3 day fishing retreat (I missed him tremendously, and was weirdly afraid I wouldn’t see him again!)- and by the time he returned, I was in a full blown panic mode!

 The dam broke and once I started crying I couldn’t stop.  He still had his fishy smelling clothes on and I fell into his arms weeping deeply.  Whimpering like a puppy separated from it’s mother, I begged, “please don't die”.  I cried and cried.  

And kept crying.  After awhile, I suggested to him that it was okay if he went to take a shower, which he did.  When he came out, I was still crying. I was crying when I made his dinner and still shedding tears when I put the dishes away.  He seemed so helpless, he couldn’t comfort me. I felt sorry for him. He kept saying, “Honey, I am sorry I have cancer, we’ll fight this together” (which made me feel worse because he was comforting me!).  All I could say  was, “Please don’t die, please don’t leave me. Tell me you’ll be okay, Please”. Terror literally gripped me. I was a mess.

 I failed to anchor myself in hope and I fell apart.

Hope.  Hope. Hope. Without hope, cancer becomes an unbeatable foe, a giant that will terrorize you and your family. 

 Hope reduces the disease, the treatments and day-to day-living to a ‘do-able’ size.  

 Our hope is in Christ and in times of despair, He promises to never leave us or forsake us. 

 I will never be alone.

Our grandaughter Annie likes to help Papi take his treatments.

As for Terence he always finds ways to encourage himself in the Lord and finds ways to encourage the rest of our family!!           

 He anchors himself daily, and refuses to allow despair overcome him.  He may sleep a lot and grimace in pain, but he never wallows.   He constantly reminds me "Sherry, Jesus is your Hope. He lives in you. Don't  ever forget that".

Whew.  And that is ONE day in our week. 

 Thank God Terence is a victor.

~Sherry

Coping with change-facing cancer together

Lessons we've incorporated.

~Entered by Sherry

Facing cancer together.
Although my spouse has cancer, the illness is really happening to both of us. Our life is being disrupted in many (though not all) of the same ways. We are sharing many of same emotions and concerns. We are both challenged to find constructive ways of dealing with the disruptions and threats posed by cancer and with the side effects of medical treatments. It can be tremendously reassuring and comforting to know that the two of us are facing the illness together and that our support and involvement will be steadfast and unwavering regardless of what happens.

Supporting Terence's true feelings.
I've begun to understand that most cancer patients feel pressure to maintain a positive mental attitude, and too often this pressure prevents them from expressing their true feelings. I know Terence sometimes holds back in sharing some of his legitimate concerns because he does not want to disappoint or burden me, or because he thinks that negative emotions might jeopardize healing.  But we make a concentrated effort to encourage one another to  support and validate both sets of his emotions (not only the positive ones).

Confronting sexual issues.
The cancer treatments have affected his sexual function. The chemical castration is caused by prostate cancer treatment (hormone therapy).  The key to dealing with this issue is open communication.  It’s typical for most couples to be reluctant to broach this topic, but we acknowledge these issues and convey our desire to face them together. I also go out of my way to reassure Terence of my love (because of who he is as a person, not because of physical attractiveness or sexual performance), that  my main priority is his survival, and that I continue to desire him!

Discussion is better than assumption.
I can’t assume that I know what Terence is thinking or feeling about the cancer, or that I know what he needs from me.  I might think that he wants me to offer encouragement and hope, when actually he just wants me to  say is  ``I'm with you and we'll face this together no matter what happens.''

The point of this is that I need to remember to talk with him about his emotional reactions and concerns....and to ask what he needs from me. Some of these needs may be concrete or practical: going together to doctor's appointments, becoming educated about his cancer and the treatment options, handling the phone calls from friends and relatives, taking over more household chores. Other needs may be more emotional: being attuned and responsive to what he is feeling encouraging him to confide in me, offering empathy and support during difficult times.

We vowed to love and take care of one another for all the days of our lives, come what may.  At the delivery of a cancer diagnosis, those vows can be really put to the test; one of us is put in the difficult position of providing non-stop care, and the other becomes dependent.  But we are here for each other;  " For better, for worse, for richer, for poorer, in sickness and in health, ‘til death do us part".   We are thinking of re-newing our vows next year!

Making Joint Decisions

For couples who have spent a lifetime sharing the joys and responsibilities of life, it’s difficult when one is put in charge of the other’s care. Most marriages find their own balance, but when one spouse is suddenly less capable, that balance shifts, sometimes making both members of the couple a bit uncomfortable at first.  It has been important for Terence & I to discuss our feelings and continue consulting one another regarding decisions, not only about the illness and treatment options, but also about everyday tasks and the other issues common to daily life. Keeping things as normal as possible can help to keep equality in the relationship, allowing both people to focus on what’s important – utilizing our time together in the best ways possible!

Constant caretaking can be quite exhausting, both physically and mentally, so I like it when I find outside help to manage needs because it frees up my energy for other interaction – tending to needs that can only be met by me.  Dinners are especially burdensome to think about.

Family dance off!

Overall, our main goal is to continue to try to focus our energ toward  nurturing relationships, fulfilling unachieved dreams, and creating an environment of support for one another as well as for those around us!

Weekly bible studies









Thanks everyone for your continued emails, cards, letters, support & gifts.  My cancer friends who have been fighting this for what seems like their life time- tell me that encouragement and support tends to decline after awhile.  Some find that a bit depressing mainly because they (the patients) are left with still facing cancer and it's affects day-in-and -day-out, and it becomes weary.  I can see that.  15 months into our own battle seems like something should be better by now!

Any ways- thanks for your friendship and encouragement. Terence & I both appreciate it!