246

As Michelle previously posted, I didn't experience any real nausea and fatigue wasn't too bad but I have been experiencing abdominal pain which ranked as about a 7 on the pain scale.  We didn't know why I was having the pain as its not really a normal side effect from a treatment.  I talked to Vandy today and they expressed they were not overly concerned about the pain being something out of the ordinary for my situation as long as I wasn't experiencing other symptoms like a fever or nausea.  They recommended I keep up with my pain meds.  I have been eating normal and not having any other problems so I figured something might be inflamed or something like that.  We really aren't certain what exactly is causing the pain but I asked what my tumor marker was that they pulled last Thursday before my treatment.  My number was 246, up from seventy something.  So that means my tumor and my cancer has become much more active.  The highest reading I ever had was in the mid 300's which was around the time I was diagnosed.  This number goes into the 1000's so my number is still manageable but we are a little concerned it's shooting upwards.  We have to hope this treatment starts to knock it back down.  The pain is most likely being caused by my pancreatic tumor pressing against the nerves in my back.  The pain shoots through my back if I'm late on meds.  I'm still on course to go back down to Nashville on Thursday for another treatment (#17).  This will be the first time I'll be doing a treatment without Michelle.  We're going to let her stay here and keep the family in order.  Jason Breit will be my wingman this week.  I never could let anyone do a treatment with me because of the ugliness but this treatment is a lot more manageable (other than the pain).  I'm not freaking out by any means because of the above news.  It's not reason to.  Reason for concern is valid.  I'm also prepared for any news a doctor can give me.  So that's the update, not much else to say.

Side note, prayers go out to my friend and coworker Melinda Dytrich Briscoe.  She married the love of her life, Jamal Briscoe, about 2 years ago and she recently unexpectedly lost him.  Jamal was 29.  Jamal and Melinda both have a strong faith and that's simply what will get them through this.  Jamal was a very friendly, always smiling, genuine person.  Hang tough Melinda!  You've got our support, prayers and love.

update for tonight

Craig has had a rough day. Fatigue is not the biggest obstacle as anticipated but cramping pain in his abdomen. Not sure what it is from or what has caused it. He has taken his pain medicine that he hasn't had to take for quite some time and put a heating pad on it. The heating pad loosen his abdomen enough to run out for dinner but after a short visit he was back in bed in pain.

It has been a frustrating day for all of us. It is frustrating to see him struggling with little that we can do and little reason for the pain. I am not really sure what to say at this point.

Although treatment is the obvious choice to ensure more time on earth it is a bit frustrating that he feels perfectly normal off treatment and when he is on treatment he feels like crap. It makes you question whether you are doing more harm than good?

I guess it was just a rough day. I hope tomorrow is better.

Finishing up at Vanderbilt

We are finishing up at Vanderbilt now.
Here's the run down of the day:
8a CT scan
10a Blood work
11:30 EKG
lunch
wait wait wait wait
2:00 approved for the clinical trial get set up for treatment
wait wait wait
4:00 start treatment

It has been a lOOOOOOng day and we still have travel back home.

The good news is there wasn't any further growth that showed up on the CT scan from the last scan 6ish weeks ago. Blood work was normal. Heart is fine (duh). Lunch was just okay (haha). The waiting can make a person crazy.
Dr. Berlin actually showed us the CT scan pictures which we have never seen. Very interesting. Ridiculous that little shadows can reek this much hectic on a person's life.
I guess that is it for today.
Craig will be here once a week for three weeks straight and then off a week.
Prayers for minimal side effects. The one that can be expected is fatigue but Dr. Berlin said that if he was sleeping all day tomorrow and not able to function then they would need to adjust the dosage. It will be a new world if Craig can do a treatment one day and be a functioning human the next day. We shall see. 

Clinical Trial

Well on my last post, I told you I was 90-10 leaning towards not doing the clinical trial.   If you've learned anything about me, you'd know those stats don't mean anything.  In this case, the 10% won and I'm moving forward with plans to do a clinical trial.  I like it when the small percentage wins.  A bunch of things were considered in making my decision.  One big one is this is my only opportunity to do this trial; I can't start another chemotherapy or I'd become inelgible.  There are also limited trials in driving distance that I would qualify for from here on out.  I also realize that clinical trials are important in medicine.  I may be a guinea pig but hopefully I'll be a successful guinea pig.  In this instance, I'll still have another treatment in my back pocket that I can come back to rather than getting closer to the end of the road options.  I think that's most of the positives.  I guess there's the hope too that this something new could end up being a great breakthrough; that's the hope.  The cons included having to drive to Nashville every week, not knowing if this will work, having more prolonged side effects compared to the treatment I could get here.  The side effects are little up in the air but it appears the worst one is fatigue and it's few days long supposedly.  FYI, fatigue before cancer meant being tired too me.  Now I know it means don't make any plans, you're not getting out of bed and tv annoys the heck out of you so there's no entertainment options while you are laid up. 
The drug is an experimental drug and is currently being tried in many different cancer trials right now.
The trial's official description: http://clinicaltrials.gov/ct2/show/NCT01227018
The trial's official rationale: Hsp90 inhibitor STA-9090 may stop the growth of tumor cells by blocking some of the proteins needed for cell growth. PURPOSE: This phase II trial is studying how well hsp90 inhibitor STA-9090 as second-line therapy works in treating patients with metastatic pancreatic cancer.
What's bad is I know I understand most of the verbaige on this page; I guess I'm in the 1%.  Again, the small percentage wins for me.  The plans are to go down to Nashville next Thursday and do lots of different screenings in the morning (full body CT scan, EKG heart test, blood tests, etc) and assuming I pass, I'll do my first treatment that afternoon.  I'll repeat week 2 and then repeat week 3 and then take week 4 off.  We'll reevaluate and make sure this first month went well and hopefully continue if all is going well.  I basically stay on the trial until either I want out or if my tumors are growing (i.e the treatment is not working).
We'll see where this leads!
Also, cool news.  I got the Oldham County government to approve an official proclamation recognizing November as Pancreatic Cancer Awareness Month.  I'll be attending a public meeting on November 1 at the courthouse to accept the proclamation and also give a brief presentation to the county government about PC.  More details to come, it's a public meeting if you are interested in coming.

Super Woman?

I stole this from another blog. Just love it! Had to share.

Wisdom

We are requesting prayers for today. It seems that our heads and hearts are teetering back and forth on the clinical trial at Vandy. We need  God to come and sit at the dinner table and say "go to Vandy for the clinical trial" or "stay here and do Gemcidibine." The list of pros and cons isn't quite cutting it to make this decision. Please pray for a clear answer from God today on what our next steps should be. We will follow whatever He says to do.

Proverbs 3 Trust in the Lord with all your heart and lean not on your own understanding; in all you ways acknowledge Him and He will make your paths straight.

Proverbs 16:9 In his heart a man plans his course, but the Lord determines his steps.  (Which step to take, Lord?)

Proverbs 9:10 The fear of the Lord is the beginning of wisdom, and knowledge of the Holy One is understanding.


Thanks for the prayers.

Huber's 2011

picked pumpkins

ate a picnic lunch

fed the fish in the pond

bought apples to make apple muffins

burnt the muffins this weekend

good memories for our family

Vanderbilt

 It was great to meet with Dr Berlin at Vandy again.  He's very knowledgeable and spent a good 40 minutes with us explaining the in's and out's of PC.  The purpose of the trip was to gain more information on a clinical trial they have going on.  The trial name for the drug is STA 9090.  It's in Phase II which means it's been tested on a few people basically to figure what amount the dosage should be for treating patients.  I was very eager to hear success info and what side effects I could encounter.  Well, the trial is still very new and he basically has not collected enough information to form an opinion if it's working or not.  The few people that did the treatment did not stay on it long because the side effects proved to be too much.  The biggest side effect noticed was fatigue that stayed with the patients for about 3 days.  This treatment is one day week 1, week 2, week 3 and then off week 4.  The people doing the treatment were not working like I'm trying to.  Only real way to make this treatment work is doing it on a Friday and use the weekend to recover.  Well, I'm a big fan of spending time with my family and if you take all of my weekends away, that's not really living life.  In my mind, Dr Berlin, who was very honest with us, questioned rather it was worth us driving that far every week to give it a shot.  I haven't 100% decided against trying to make this work but I'm about 90% leaning away from it.  I do have 2 very viable options that I can do here in Louisville.  Both are treatments that are done weekly but the side effects are very minimal and I can probably go back to work the day after the treatment.  Gemcitibine is the standard treatment for PC and some people respond to it and some don't.  I'm optimistic I'll have some success with it because my body has responded well in the past.  Gemcitibine plus tarceva is the most popular option for me but I can also shoot to do gemcitibine plus abraxine.  Abraxine is a very common chemotherapy used in breast cancer treatments and is currently being studied as a clinical trial for pancreatic cancer.  It's getting good results thus far.  It's not FDA approved for pancreatic cancer as of now but it is FDA approved for other cancers.  Basically, we'd have to run it past the insurance company to see it they'll approve gemcitibine with abraxine.  It's getting approved commonly so this may be a good option either for now or later if the other doesn't have any success.  I need to make a decision very soon and start this up either this week or next at the latest.
Thank you Wegner's for dinner and good company while we were in Nashville!

One Year Anniversary - October 4th

It was exactly one year ago.  I was at work and I noticed the whites of my eyes were turning yellow.  I called the doctor and he told me I needed to go to the emergency room.  I took my Monday morning conference call and wrapped some stuff up at work and then drove myself to Norton Old Brownsboro Crossing.  My life was then forever changed.  The diagnosis came pretty quick after they did a CT scan.  I remember lying in the bed shell shocked but still not realizing what they just told me.  They told me it was probably pancreatic cancer but they didn't immediately tell me what that meant.  Everything sunk in that first night at the hospital though.  I remember not completely freaking out because 6 months seemed like a long time away.
I've shared the stats before, my chances of making it to 6 months was 50% and it was 25% to make it one year.  I am extremely fortunate to still be here.  I'm one of the lucky few, I guess.  One year is a success.  Today has been a bag of mixed emotions.  While I feel fortunate to be here, I'm still reminded I'm going to be climbing that hill from here on out.  I'm still spooked by how much my life changed on the last October 4th.  That day was zero fun.  My next goal is October 4th, 2012.
This type of cancer can be extremely aggressive.  I feel I'm doing good right now but things can change in a couple of days.  There are countless stories of folks being diagnosed with this cancer and not making it a week after diagnosis.  I have to keep reality in check.  I really feel great right now though a lot of that has to do with the fact I haven't had a chemo treatment in about a month.  We're headed to Vanderbilt on this Friday and will be making a decision soon.
One good thing that has come out of this is my upgraded relationship with God.  I ask the question every day, "How do folks get through this type of mess without a deep faith in God?"  Where do they turn when they need to be picked up.  I remember when I first typed on this blog, I stated that I wasn't mad at God for allowing this to happen.  I said I was mad at myself for the being the type of person that could deal with this.  I feel I've handled this in a decent manner.  The things that keep going is my relationship with God but also important is my friends and family that have helped support me.  I don't mind and cherish the fact that I help people see what is most important in their life.  I want to encourage people and I want to be a wake up call to people.  Life really can be short.  God and your family and your friends should be your priority.  Another lesson is quit putting important things off, do it.  There's countless things to learn from this situation.  It's stuff we know, we just have to act upon those desires and plans.  It's not easy, I still procrastinate with things but I'm getting better.
I'll end this post with saying a big huge "Thank You" from the bottom of my heart.  I have felt so loved and so prayed upon.  We have such an awesome support system.  Thanks for reading our blog too, it's been a great avenue for us to get our feelings out there.  I hope and pray that I'm able to enjoy my family for another year.  Michelle and my girls mean the absolute world to me.  I can't stand the thought of making them cry.  My main prayers go out for them.
God bless!

Thankful Thursday (on Friday morning)

Sorry this is a bit late, now that Grey's is back on we may have to do thankful Fridays.

This thankful Thursday is an easy one.
Thank you God for the sunshine yesterday! The girls and I played outside for HOURS yesterday. They drew the birds in the sky, rode bikes, scooters, drove the jeep around etc. We met a neighbor that goes to our church. We have lived here 5 years and I don't know the neighbors very well, sadly we have just been sleeping in our house most of those years rather than really living here. The busy life of daycare, work, sleep, eat, survive, rinse repeat has been our existence for many years. Part-time is a good thing for this mom. :)
Which leads me to my next thankful point. Thank you for my job! I love what I do (media buyer) and I love the gals that I work with. I am thankful for flex-time and part-time and the privilege of putting in my time and then picking up my kids and playing outside (with an iPhone attached to my side but none the less, I'm outside with my kids!).

Thank you for letting us be a family of 5 today and yesterday and the day before.
Thank you for great friends and great heart-to-hearts.

God is so good today and everyday!

We are okay. really

We are really doing okay with the last scan results. It did not take us by surprise and really when you get down to it is the same news over over as it was on October 4th 2010 when this journey all started.
It is a different perspective from within this house then on the outside. We have lived with the news of terminal cancer for close to a year now. The shock has worn off and doing our best to live with this is the challenge at hand. If we could take a magic wand and make this go away we would but that is not the case so we are building the support system and working through each emotion each step of the way. We are really okay.
When we turn every emotion, every scan and every issue that comes along with this cancer over to Him, we are okay.
When we keep them to ourselves, or search for them on the Internet or wait for a doctor to come up with some life saving plan... we are in a pit.
We are trusting in God to heal Craig and walk with us each step of the way to that point.

I do have a HUGE prayer request for our extended support system. Please pray for our day to day system. It is a tough place for many of them to be in. They are close enough to be family but don't really have the support in place to lean on. We need support for our support.

I have been wanting to update the blog all weekend but really there is not much to say. We really are doing okay, we actually got a lot done in our house this weekend, spent some time together as a family and with some great friends. All pretty normal.

Our 1st appointment at Vanderbilt is October 7th with Dr. Berlin. They will take blood and make sure that Craig's levels will qualify him for the clinical trial and talk about the side effects to make sure it is something  that we want to do at this point. Craig is happy and feeling good right now.

http://www.vicc.org/dd/display.php?person=jordan.berlin

Here is Dr. Berlin's bio. He is the one that we met with a while back and we will see on the 7th. He is Crazy smart. He is actually funny too. Nerdy funny but none the less funny.

I guess that is it. There is not much going on here. I think we have accepted the diagnosis that has been handed to us and we are taking one day at a time. Please pray for our peeps.

If you get the chance listen to this sermon of endurance... Kyle does it again. I need to listen to it again. I think there were a couple points that I got stuck on and missed some good points. We are so blessed to have such a talent at SECC.
http://www.southeastchristian.org/?page=3476
great sermon.

Rick Warren Purpose Driven Life Interview

I got this email from a friend's dear mom and I wanted to share it:

You will enjoy the new insights that Rick Warren has, with his wife now having cancer and him having 'wealth' from the book sales.

This is an absolutely incredible short interview with Rick Warren, 'Purpose Driven Life ' author and pastor of Saddleback Church in California.
In the interview by Paul Bradshaw with Rick Warren, Rick said:
People ask me, What is the purpose of life?
And I respond: In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven. One day my heart is going to stop, and that will be the end of my body-- but not the end of me.
I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity.
We were made by God and for God, and until you figure that out, life isn't going to make sense.
Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one.
The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness.
This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer.
I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore.
Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life.
No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for.
You can focus on your purposes, or you can focus on your problems:
If you focus on your problems, you're going into self-centeredness, which is my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others. Very important~
We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her- It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people.
You have to learn to deal with both the good and the bad of life. Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy.
It also brought a lot of notoriety that I had never had to deal with before. I don't think God gives you money or notoriety for your own ego or for you to live a life of ease.
So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72.
First, in spite of all the money coming in, we would not change our lifestyle one bit.. We made no major purchases.
Second, about midway through last year, I stopped taking a salary from the church.
Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation.
Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free.
We need to ask ourselves: Am I going to live for possessions? Popularity?
Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or am I going to be driven by God's purposes (for my life)?
When I get up in the morning, I sit on the side of my bed and say, "God, if I don't get anything else done today, I want to know You more and love You better."
God didn't put me on earth just to fulfill a to-do list. He's more interested in what I am than what I do.
That's why we're called human beings, not human doings.
Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSHIP GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD.

Vandy or Gemzar

I had my CT scan this morning and we met with Dr Hamm this afternoon to determine what to do next. The scan showed no growth in my pancreatic tumor and no growth in my liver spots however there was a new "shadow" of a new spot in my liver that had not been seen on any previous scans. Translation is not exactly sure what it is but it's probably a new spot developing. This test was not too much of a surprise for us. The increase in the tumor marker was our first sign. Today's test isn't great news but I am relieved in one major fashion. I got to a point where I absolutely hated my treatment because of how sick it made me, how long it took me to recover and how low it brought me mentally. I'm done and officially off that treatment.  This makes me happy.  This will hopefully give me some of my life back.  Now we have to make a decision though.  Vanderbilt or Gemzar.  I set the first available appointment with Dr Berlin at Vanderbilt which is Friday October 7th (next available was Oct 27th); it's the soonest I can get in.  Vandy has a clinical trial that I should qualify for which includes an investigational drug that's taken IV once a week for 3 weeks and then off the 4th week.  The trial is definitely intriguing but the biggest concern is going to Nashville once a week.  We've got to get more info on the trial which we'll get at the appointment.  Biggest question is whether or not the drug is having any success and the 2nd question is side effects of the treatment.  One would assume that because it's only one drug and given basically every week, that the side effects should be limited.  We'll have to weigh the promise from the study and the side effects with the prospect of a lot of driving.  The other option is gemcitibine (gemzar) and tarceva.  Gemcitibine is by far the most common treatment for pancreatic cancer; it's the standard.  It's also once a week, can be done here in Louisville and is by far easier on the side effects.  The tarceva is a pill taken daily with its only real side effect being acne.  I'd have to get something to combat that.  I wish the Vandy appt was sooner but it's not.  The trial would require me to be off of treatments for 4 weeks so that kind of fits the schedule.  I will feel bad if we wait for the appt though but decide not to do it.  That's our dilemma.  Plan is to wait for the Vandy appt to make a decision as of now.  Prayers requested are for making a good decision and that the cancer lays as low as possible why we wait out the next couple of weeks.

Change in Plans and Ross Huettig

So I called yesteday and made a pseudo emergency appointment with my oncologist this morning.   I shared with him my desire to get the heck off this current treatment.  What it came down to was it's taking me 8, 9 or 10 days to recover from the treatment only to turn around and do it again.  It's not the way I want to live my life.  I am also not confident its working based on my tumor marker going up.  I was scheduled to do the treatment next Wednesday and have my next scan on the 4th.  The doctor concurred with my opinion which is pretty normal.  The current game plan really comes down to finding the best balance of being aggressive and also having a decent quality of life.  We decided to move the scan to next Tuesday morning.  If the scan shows improvement, then I may do the treatment scheduled next Wednesday but its probably not going to show improvement and is more likely to show us going in the wrong direction.  So most likely no chemo next week.  Its time to decide on the most common treatment majority of pancreatic patients do which is gemcitibine and tarceva or find a clinical trial that makes sense for us.  A clinical trial would most likely consist of gemcitibine and an experimental drug.  The gemcitibine treatment is typically done once a week with the fourth week off.  It's got a whole lot less side effects.  I also do not have to be hooked up to it for 2 days; its get it IV at the doctor and then leave.  I've been hitting that wall this cancer brings that I've heard and read a lot about.  There comes a time when the big picture comes into place.  Right now that means, how can I best enjoy my family and friends right now.  We'll keep you posted if we learn anything more about the clinical trials.

Ross Huettig, 26, passed away Wednesday.  I met Ross at a support group I go to occassionally at Gilda's Club.  It's a young adults group for those with or have had cancer.  Ross had an awesome young personality.  He was very different from me in a lot of ways but not.  He was a young man that believed in God and loved death metal music.  Not your normal combination but to me but that's part of what drew me to him.  He was one of those people that anyone would just be happy to be around.  I became facebook friends with him a few weeks ago and started to see some health concerning messages on his page.  I tried reaching out to him last Friday asking what could I pray for.  I told him I wanted to get to know him better.  I never got a message back from him but learned he was fighting for his life.  I'm in the seat that understands what he has been going through.  I'm actually happy to an extent for him.  He's done with chemo, done with pain.  I often visualize that meeting with Jesus and I think Ross is in an awesome place.  In some ways, I'm a little jealous, I believe heaven is that great.  Anyways, it was great to know him.  He's one of those people I'll look up when my day comes and hopefully I'll get to know him better.  God bless you Ross.

4/13

I have two scriptures on my bulletin board next to my desk that I read throughout the work day.
One is:
"I can do all things through Christ who strengthens me." Phil 4:13.

Our wedding anniversary is April 13th (4/13).

Wow, it just hit me sitting here so I had to share.
Prayers for continual strength.