Terence Luttrell-was diagnosed with advanced prostate cancer at 46 in July 2009:PSA 431 & Gleason score 9. The diagnosis was advanced stage of the disease; Prognosis:6-18 months to live & came as a complete shock. Terence passed away after fighting for 37 months as the sun rose on Sunday August 19,2012.
Our family is learning how to pass through trying times, allowing it to challenge us in our faith growing in Christ & painstakingly learning how to live above the effects of cancer!
Terence 8.26.10 The clinical trial I am on is drawing to a close (TOK-001). Hard to believe. I waited for some time to get on it, and now it is almost over. My PSA is still on the rise. Now what?
On Sept. 3 I am scheduled to have my last apppointment with the trial team. I am having
bone scans, CT scans and more blood draws to conlcude the trial. We will see how effective TOK-001 was on the cancer cells. The scans will show the doctors what the cancer is doing.
For almost 14 months Sherry and I have faced the effects of a disease that can be devastating.
It has truly tried to take ahold of every part of our lives, and now we face the ultimate "What if".
What if the cancer has gotten worse? What if there are no other options?
Times like these can make us feel helpless and hopeless.
Yet, the good word in Psalm 33 tells me that "my soul waits (hopes) in the Lord; He is my help and shield. For my heart will rejoice in Him, because I have trusted in your Holy name. Let your mercy O' Lord be upon me, just as I hope in you".
So, we know that God is our helper in this time of need...as we trust in Him it washes away the feelings of fear and helpleness.
Today is a TOKAI day. For those of you who haven't been following, it's a clinical trial appointment in Seattle, where "Subject 101-102" (Terence) gives up tissue samples, blood and there is no such thing as privacy- nothing is out of bounds!
I think what makes these days difficult emotionally is that we are face to face with other cancer patients. That's hard to see. Little children, older kids, young moms.....I view them from an emotional aspect: the heart of a mom or grandma and it breaks my heart. Then I remember that I am there, as a wife. That breaks my heart all over again. This happens every darn week. It's taking some major work in me to over come that.
There are times when I share my feelings in a poetic manner, and other times from a philisophical perspective and even though I always try to end with a biblical perspective, the pain never leaves. That's because there is nothing romantic about illness. It is brutal, cruel, lonely and terrifying. You have to understand that anything positive that emerges from this very real experience is not a characteristic of the nature of illness, but of the grace of God. Only by Him can our family embrace and face life in the midst of our most trying circumstances, and continue to reach out to help others.
We choose to sing in our little boat or rather, this life raft. It's small, flimsy and gives us perpective of life from a very close range.
Yes, cancer is ugly and it's a messy greedy demon bent on theft and destruction, sometimes it's insatiable, it takes apart piece by piece, it's goal is to take the whole.
But somewhere there is a balance, and opportunity for hope. If someone feels better by watching how we handle (or don't handle) this mess and they feel better about their lives, then that's not so bad.
If you are watching us sing from our little life raft, and it encourages you then that's good. Some days I am an ugly, angry mess, a tearful story tucked behind a pretty face and a strong spirit....not hiding behind a story. The story is Terence has a bad illness, and we are hoping in a miracle.
Onward ho- Christian soldier!
More later...when we return from Seattle tonight!
Clarify Please....what's a fatty dinner? I thought I knew what was best!
Terence is a part of a clinical study for a medicine called TOK-001—right now it’s the most promising experimental treatment for hormone resistant prostate cancer (HRPC). It is still in Phase I. (a phase I trial: Researchers test an experimental drug or treatment in a small group of people for the first time. The purpose is to evaluate its safety and identify side effects). During this trial, more information is gained (via experimental treatment) about its risks, and its effectiveness).
So here is an amusing tid-bit. We received a phone call from the lead oncologist for the trial. He told Terence he should try eating fattier foods, because in “like” studies, it shows that the medicine is easier metabolized.
I am amused. We’ve just spent the last 14 months learning how to eat right, re-training our habits and have a genuine commitment to it! We’ve met with cancer nutritionists and nutritionists in general; have increased our grocery bill (organic and healthy foods are more expensive), and I have had to learn how to cheerfully cook healthy dinners!!!!!!!!!!!
We haven’t had further clarification- but I am guessing our Dr. is referring to “good” fats, such as avocados and such, not pizza, hamburgers, ice cream or nachos, right?
Meanwhile, Terence decided to have Pizza for lunch :) That’ll probably come to end tomorrow when our Dr. calls back to put in plain words what a “fattier” dinner is!
We had a good day today. Friends Cory and Beth came to spend some time with us. It was uplifting and fun ( they shared pizza with us!), We skyped with our eldest son Eric (in Chicago) and in general, just had a happy day.
Prayer request: We need wisdom when to listen and trust the doctors and when to discern what’s right for ourselves.
It just dawned on me that I was taking the same pain medicine as Dr. House (oxycodone/vicadin) for 'quality of life' (QOL) pain management.
However taking this medicine does not make me smarter as it does House…on the contrary, it severely fogs my brain, rendering me to an almost vegetative state whereby simple decisions or instructions are difficult or completely forgotten.
It also brings about bowel obstructions, severe itching and makes it hard to wake up in the morning. Not a good way to go through life!
So I began the process of cutting back on my pain meds-not an easy thing to do (because I am in pain). However, after three weeks, I have successfully cut out 75% of the oxycodone previously taken.
Not only do I feel better, but I have regained my faculties! So nice to be able think again!
At the writing of this TerenceFlash I have started the fifth of five consecutive days where I feel pain at a lower grades and energy at highs not experienced for many months!
Praise God, I say (how else could I take less pain meds and feel less pain)?
So, thanks to all my friends for the prayers you have lifted up on my behalf. Keep knocking on Heaven’s door and we will see these rebellious cancer cells flee from my body. I believe it and receive it!
Today was a good day. It was hot, but Terence blew up the kids pool; and hung out in it with them, which was awesome. They grandkids spent the night over, and at 10:30 PM (past his usual bedtime!)- he was out running around in the dark with flash lights playing chase!
So this is 2 good days in a row! Yay! He hasn't had that for over a year now. Two days with-out a "cancer nap" (i.e 3 hour zonk out session)- But instead, stayed with us outside, had iced tea, told stories, and enjoyed the entire day with us.
This past weekend, we had some dear friends (The Pearsons) come visit- but Terence missed out- he was on a 3 hour cancer- zonk-out session. That happens more often than not, (our daughter-in-law Callie said today, "I harldy ever see you any more Pop.......whenever I am here, you are resting". Annie comes over and when she walks in the door, says "Ssh....Papi seeping...he not feel good")
I can't tell you how happy I am in getting my husband back!
Thanks for prayers everyone- small things like this are Huge!
Terence is making a valiant attempt to stay off the narcotics- but the pain was so overwhelming this weekend (even with Ibuprofin ‘therapy’ and lots of rest)- he needed oxycodone to take an edge off the pain. With that realization came a little bit of depression for me. I was really hoping he could pull this off. I guess I was thinking “if he can live without pain pills, maybe the cancer isn’t so bad after all”. All I can say is that Terence is not a advocate for prescription pills, so if he needs pain meds. his body must be really hurting! He still refuses morphine- (I am glad for that).
Other than ministering on Sunday Terence rested, did some light yard work and despite the backdrop of cancer (and fatigue), we had fun this weekend. Today he seems raring to go! It’s 5 pm, he hasn’t napped and he is outside making plans on building a walk way out front. Life almost seems normal!!!!
I try not to allow anxiety to take over- which is easy long as I don’t I stop doing what I am doing and start thinking why I am doing it (then I remember that Terence has cancer). But staying busy and brainless doesn’t always work. The answer for me is this: I need to remind myself that the Lord is good, and that everything will be OK.
Today Ternce was feeling pretty well, so we went to the races.....(go-carts!).......with Callie, Chloe and Bella. It was the first outing Terence and I have had since he started the clinical trial 9 weeks ago. He really hadn't had the energy or strength. It was great being outside, laughing and feeling the sunshine.
He is resting now, probably down for the rest of the evening- it took a lot out of him!
The doctor prescribed morphine for pain management this week (ugh. Made me cry at first)....but after several days of thinking and praying about it, we decided that morphine is a road we are not willing to go down. In fact, he is de-toxing his body from all the narcotics and we are praying for simple, natural ways to deal with pain. We both feel that morphine is a sure bet to a sedentary life and just the begining to the end of a story that we are not willing to have written for us.
As we walk in this path (learning how to live above the cancer & not letting it rule us), it's a path of trust. In this path, trying to figure out God's (better) plan is not always possible. So we face situations that simply will require faith with seemingly illogical decisions....we can't fear making the wrong decisions regarding Terence's health care. So we make decisions to the best of our ability in Terence's best interest and choose not to walk in fear, but instead trust that God will go with us in it.
"Do not tremble or be dismayed, for the Lord God is with you where ever you go" Joshua 1:9
Sure wish there was a cure for cancer, but until then, we trust that this decision and the next and the next will be just fine.
That said-----------besides daily exercise, daily massages, lots of rest, deep breathing.....any ideas? (No supplements allowed while he is on TOK-001 trial)
We spent a better part of today at the UW research clinic for Terence’s weekly TOK-001 appointment.
It didn’t get off to a very good start- but he was a trooper. We had several RN’s and a phlebotomist present to draw his blood, but no such luck. It was 7 “sticks” later (his arms are black & blue) before they gave up and took him up to the lab. I felt really sorry for him, since he wasn't feeling too good in the first place. He is a polite patient though.
Summary of this week’s appointment:
• His liver enzymes are down (that’s good news: they have been rising since the experimental drug is metabolized in his liver, this organ is of particular interest)!
• His Bilirubin count is high. This is indicative of gallstones. Which are on the move and casuing him pain (I personally think the TOK-001 is partial cause...but no proof).
• He has over all body itching & nausea. Also indicative of gall bladder problems.
• His heart is strong !
• His kidney is great!
• Though he has been having gall bladder concerns, Dr. Montgomery would like to monitor it rather than take him into surgery (if he has surgery, he will have to come off the trial). He would like to try and wait, since Terence will be done with the trial in 3 weeks. So, we are on a watch and see. The gallbladder pain is episodic, and so we will just have to measure the severity and hope and pray he doesn’t have an emergency surgery.
• His PSA is up from 9.7 to 12.7. That’s not good. It’s been on the rise.... consecutively- (He is determined to be hormone refractory- it seems there is no medicine to stop the cancer growth).
We got home around 1:30 PM and he has been sleeping since (it’s 4 PM). He was flushed with body aches/joint pain and fatigue swept over him and he needed rest. He is still not on any new pain medications (an oversight on our part). But I spoke with the trial director this afternoon and they are wondering if some form of morphine is the best option at this point.
So……here we are….learning how to live above the cancer. When the report come back and doesn’t look good…..we are reminded that God is still faithful. When I see Terence in pain, I remind myself that God is still faithful. He has not abandoned us (though at times I may be tempted to feel that way)!He is faithful and will continue to hold onto us.
Isa: 63:9 “….and He lifted them up and carried them”.
Next week is another TOK-001 appointment. Please pray with us that his liver remains healthy, healing for his gall bladder (no emergency surgery!), and that his PSA will go down!
Tomorrow is another Tokai day.......those are always challenging days for me. I guess because that's wen we are face to face with cancer.
Even though I live with it every day, Terence doesn't 'look' like a cancer patient- he has all of his hair! It's only when we enter into the cancer culture at the Seattle Cancer Care Alliance- am I faced with the true ugliness of the disease.
(For those of you who have not kept up with this unfolding and unwanted drama- Terence has by-passed standard mmedical care for the prostate cancer....so he is on a clinical trial called TOK-001).
Terence has been off of all pain meds for about 5 days now because he has been having some liver/gall bladder issues. The dr. needs to be able to isolate what is causing it.
He may have to have his gall bladder removed.
He is still on TOK-001- and we are praying the liver/gall bladder issues don't interupt this.
He still has some severe ups and downs of fatigue.
He has gained back his cognitive/memory skills,
A tumor has metasisized to his spine & his PSA continues to rise.
The original tumor hasn't shrunk, but the tumor(s) on his sternum and lymp nodes from his last scan (3.10) have disappeared!
That's about it. Every day I pray for health to his bones and healing to his body-------Thanks for joining me!
Wow, my life has changed! Never before have I been unable to plan for the future or strategize my next move on this chess board called life. Sherry calls it “the new normal”. How the new normal plays out is day by day. It is not a life of “reaction” to circumstances or one of resigning myself to hopelessness. On the contrary, it is a life filled with increased faith and trust in Him whose Name I call upon.
The book of Luke says it this way in chapter 12 verse 26: “If you then are not able to do the least, why are you anxious for the rest?” Upon reading this scripture I immediately thought of people who open their refrigerator door to find it full of food. However, the first thought that comes to their mind is “how am I going to afford to fill this fridge again in two weeks?” This is a clear example of a person who worries about the future instead of receiving the blessing of now.
My life now reflects a new normal. It consists of thanking God daily for His wonderful provision and trusting Him in His healing power. My faith is strengthened daily. Honestly, I don’t know what I am going to do next week-today has enough concerns of its own. Maybe I will go fishing next week; take a long walk in the rain with Sherry; perhaps play some Texas hold em. Whatever I do, I know God is with me, and quite frankly-that is all I need!