Wednesday, September 22, 2010

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.


Monday, September 20, 2010

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!

Tuesday, September 14, 2010

Be well! Fish On!

Be Well! Fish On!
September 14, 2010

Terence is on the river today- he left this morning to partake in a flyfishing retreat  for men battling all forms of cancer, called "Reel Recovery".

He has been a part of this group since he was diagnosed last year.  Anyone who knows Terence, knows that he loves the outdoors; loves fishing, hunting and sharing the Lord.

The retreat covers fly fishing basics; 'couragous conversations' (fosters sharing of life stories for men) and post retreat communication, their hopes are that the men will form new and lasting friendships and gain renewed hope as they confront their battle with cancer.

For Terence, being out doors is healing to his soul, so he tries to continue to fish (since hunting would be a challenge right now), although he does have an invitation for a Wyoming hunt next October (with his long time friend Jim Sessions). 

That is one of his next big goals: get healthy enough to make the hunt next year! Thanks to everyone who is helping us make it from one day to the next! Here's to Terence's next hunt, October 2011!
Photo's: (top of page): fishing with longtime college friend Matt Litzleman; (above), salmon fishing with son-in-law Mike; (left); Terence's trophy wall.

Monday, September 13, 2010

I have to learn how to "live well” without Terence being cured.

Terence has had two good days in a row thank God! Saturday evening was horrible, but he slept well and Sunday was a good day for him.

We are still adjusting his diet: he needs a little more fat added to it, so his body can absorb the TOK-001. But we have to be careful with the types of fat, because he has gallstones and the OK-001 already puts stress on his liver, so it’s a balancing act- try it and see- type of time right now.

With the greater absorption of TOK-001 comes greater nausea. He is nauseated more often now, so I assume he is absorbing the medicine, which is good. Just have to deal with the nausea!

His pain meds. situation- well, is pretty much the same. He gets a systemic itch from oxycodone and morphine, even though he has increased the prescription strength antihistamine. So, we are doing the try-it and see- routine with ibuprofen and other combinations.

Trying to live above cancer has been a new challenge. I have finally learned how to live with it. It seems like Terence got cancer overnight, so accepting it has been hard to face up to. It has taken me  at least 12 months for me to be able to wake up and say “Terence has cancer, and it has changed our lives forever- OK, so what do we do about it today?”

Living above it is something else. For me, it’s getting to a place where it doesn’t negatively affect me & our entire family- I am learning how to say, “Ok- so Terence has cancer, what will do for us, not to us?” I am not quite there yet.

Some days I feel bullied by this cancer and that makes me angry.

Some days I feel overwhelmed by the cancer, and that makes me sad.

It’s not only the big things that get to me. In fact, it’s usually the plain old everyday details in life- that are the most difficult for me. These become the breeding ground for fatigue & depression.

I have to learn how to "live well”
without Terence being cured.

It feels like a lonley  journey.


Thursday, September 9, 2010

Terence on extended phase I TOK-001 trial.

I haven't written an update- just wasn't feeling like I wanted to write until I put my big girl pants on (A.K.A. 'courage').

Overall, things are well (I think that's the best way to put it)...... difficult to describe.

Good news:

1. Terence was permitted to continue the clinical trial and was placed on the extended phase I TOK-001 trial- even though his body hasn't been fully absorbing the medication like the other 6 men. We have to re-vamp his diet plan (yet again) until we find the food that will help it bind. Dr. M says that if we can do that, Terence would benefit from TOK-001 TEN-FOLD (right now he's benefitting from only a small percentage of it).

2. The scans showed no NEW cancer/tumor growth. Everything is as it was three months ago!

Not so good news:

1. Reality check. TOK-001 or any other medcial treatment can erradicate/ take away this cancer.

2. Terence's PSA has continued to rise quickly (from 14.7 last week to 22.5 today)- which indicates cancer growth, they just can't see it (they call it "micro-metastis").

3. Scans revealed more bone degeneration in all joints and spine......due to lack of hormones.

4. With the greater absorbtion of TOK-001 into is system comes some pretty bad nausea and vomitting.

He rests a greater portion of the day (after fishing in the mornings)- and goes to bed by 6 or 7 pm.
He is also now on morphine for the pain- but is having allergic reactions to opioids- so who knows what will happen next :(
Thanks for prayers---------

Wednesday, September 1, 2010

A marathon.

September 1, 2010

A marathon.  (by Sherry)

You have need of endurance” (Heb 10:36)- Ugh. Sounds tiring to me.  This stupid cancer feels like a marathon: one intentional step in front of the other, remaining focused, goal oriented, purposed in the day, fixed on the good, concentrating on Terence’s wellness, aiming for a miracle…all of these take mental, emotional and spiritual energy! 

 We’re learning that resting makes it so we can run (and finish) this race....the Lord doesn’t ask anything of us without giving us grace; the ability to face each day with strength.... just trusting that He is here for us...every day.

I received a card from my friend Yvonne today (I love receiving her cards, they are so timely)! To sum up the card, it said, “When you can’t, He can". (“When you are the neediest, He is the most sufficient. When you are the weakest, He is the most able. When you are the most useless, He is preparing you. When you are the least, he is the greatest”).

In any prolonged health crisis, it is so easy to feel abandoned. In fact, it’s an overwhelming feeling and it comes to mind often, especially when we feel lonely or when Terence is not having a ‘good day’. Though we are never really tempted to give up (how can we?), sometimes the thought of endurance seems impossible.

A good word from a friend often helps us remember to stay focused on truth: how crucial it is for us to tell ourselves the truth, especially when we don’t feel like it. In trials, we face the choice Job faced. We must choose to keep believing that God is sovereign, in control and good toward us, never leaving us or abandoning us.

So in the midst of the marathon called "terminal cancer" all we can do is rest. Literally.

• We are learning to become comfortable with lots of rest. Rest and sleep are gifts, not a waste of time.

• Terence’s body (and mine) rebuild when we relax and meditate.

• We do what we can and feel good about it, not feel bad about what we can’t do.

• We are learning to balance activity and a calm spirit.

• Relaxing. We’re learning that it’s a myth to think we are valuable only when we are productive.

• Terence is learning to not become exasperated by limited energy and ability to work for only for certain lengths of time.

• We are learning to just be calm in the midst of terrible reports, terrible news. We find peace when we  remember that our Maker is mindful of us.

So....Terence went fishing today….he caught an 8 lb. silver salmon. He enjoys fishing. I stayed home and read a book. I like reading.
 He came home, filleted his fish (for dinner), showered, rested and meditated on some scripture. He’s learning to do things that is good for his body, soul and spirit.
Thank-you for your kind words of encouragement. We are learning how to enjoy the marathon.


  • Last TOKAI blood draws tomorrow (9.3.10)
  • New scans (bone/CT/MRI) on Friday (9.4.10)
  • Onoclogy appointment on 9.8.10 /decisions for future treatment, if any!