He will have no fear of bad news, his heart is steadfast, trusting in the Lord. Psalm 112:7

Wednesday, November 30, 2011

tomorrow will be tough to say the least

This seems very surreal. This can not actually be happening. This isn't the life that I imagined. I keep weighing myself wondering how many Thanksgiving pounds I have gained and nothing. It is just the weight of the world on my shoulders. I can feel it. I feel like I am 300 pounds.

I worry about the timing that this journey will concluded. Emily's birthday is the 13th. She has been talking about it for 6 months. Christmas seems so far off but also so soon. Craig has been taking a lot of naps and hasn't felt well. What does that mean? As much as I have hated what Dr. Hamm has said in the past, he hasn't been wrong which is just devastating.

The majority of the day I am not panicked or crying. I am just here. I try to talk myself into keeping calm and taking one day at a time. I remind myself of my favorite scriptures and pace myself throughout the day. I trust that He will work all the details of timing down to His perfect plan.

We have some appointments tomorrow. Not looking forward to them at all. It will make this too real. I am not sure how the thought of taking one day at a time will work at a funeral home. I'm not 95 years-old I shouldn't need to go and plan a funeral unless it for a grandparent!! Just seems unreal that this is actually happening.

Feel like we took a turn somewhere and we are in someone else's life. We just need to find our way back to where we took the wrong turn and there we will have a healthy family of five bickering about who is going to change the last diaper of the day or who is going to do bath night tomorrow. We just need to get back to that live that I recognize. I haven't recognized my life since October 4th 2010. Looks like I am a long way off from anything close to "normal".

Tuesday, November 29, 2011

Tough Day Again

Good news, I have not gotten sick which was a big worry of mine.  I'm a little fraile and I'm worried if I get sick, I'm going to end back up in the ER needing fluids.  I was however very worn down today and had to take multiple naps.  We upped some of my pain meds in the last day to try and curb having to take pain meds so often but I'm worried that was the cause of making me extremely drowsy.  We also took so many pre meds before yesterday's treatment and I'm worried that is what knocked me out more.  I just have a lot of worries, I'm by in large, more unhappy and not feeling well through the day which makes me question going through these treatments.  We are at such a crossroads.  I haven't been able to enjoy my family the last few days and I'm not sure what tomorrow will look like.  I'm not feeling up to work and that is a another big decision that is looming on me.  Lots and lots of big decisions are made right now.  Please pray for direction.  Please also wrap your prayers around my girls.  I so much want to protect them but I feel I'm limited with what I can do.  We'll follow up again here shortly, it's late and I'm tired.

I did get to do one thing cool today.  Michelle and my-drowsy-self made it to J Staples Jewelry today to check one thing off my "get things in order" check list.  I'm getting my little ones each a nice diamond necklace that will be given to them down the road very possibly as a wedding present.  If you want to get me teared up in about two seconds, I think the quickest way to do that is to remind me I can't walk my daughters down the aisle.  The first thing I thought of when I held each one as a baby for the first time was how proud I'd be walking them down the aisle. I even the had the daddy-daughter songs picked out from day one.  I'm done for the night, good night.

Monday, November 28, 2011

How did it go this morning?

I'm getting a bunch of text messages asking how today went.
Not much to say. We were home by 11:30 after the start of Gemzar and Craig slept all day.
He may have slept b/c of too many anti-nausea meds to start the day off with or it could have just knocked him down b/c of the shape he is in at this point. Not sure.
One day at a time.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
This scripture is pinned to my bulletin board downstairs in the office. It still speaks to me. I know His plan for our life is far better than what I would have imagined. At this point it is hard to say that but I trust Him enough to ride the roller coaster to see what He has in store.


I will post later. Kyle Idleman had an AMAZING sermon this weekend about being filled with the Holy Spirit. I felt like I was in a pep rally... so much to say...I have to get it all together... we are so blessed to have him at SECC.

Saturday, November 26, 2011

Thanksgiving Weekend

This weekend has been tough. I am having a hard time getting going in the mornings. I don't want to get out of bed and my stomach is in knots. Craig is the one that keeps saying lets make this day a good one. So I get up and start the day. This weekend has been super busy so that helps since there is a millions things on the to-do list. So every morning I get moving through the day thinking how am I going to get going when Craig isn't there to get me moving? I can't say there is one thing that really worries me except him simply not being here, period. I have not been without him for more than a week in our 15 years together. I am not sure I remember how to function without him here. I am not sure I even know who I am. I guess some independent people might think that is a bad thing and one day long ago I did too. But when someone as wonderful as Craig makes you a better person for just knowing him let alone getting the privilege of being his wife it is not a bad thing to not know who I might be without him.

So we are taking one day at a time. It seems so surreal and unbelievable that we were handed the news that we did on Tuesday afternoon. There are hours of the day that I would say Dr. Hamm has it all wrong there is no way that Craig has "not a lot of time left." Wednesday we had pictures done (which were a little disappointing) and we got the house ready for Thanksgiving etc etc. He never stopped to rest until the end of the day. Minus the pain meds it all seems very normal. I am haunted by other blogs have said the same things only a couple months before the cancer victim's body surrendered to the disease.
It just seems like there is no way this is actually happening.
But it is... and reality stinks.

Our girls don't really get our reality right now. I have told them that the chemo that he was taking in TN didn't work and he is trying something new on Monday. I have mentioned to Emily there are not a lot of "medicines" out there for this cancer. With the weekend being so busy they haven't really stopped to ask questions. They are pretty use to him not feel well. They say stuff like I hope Dad feels okay so we can play fill-in the blank with whatever crazy thing they have on their agenda. But they do not understand the reality of the situation. We have laid some groundwork talking about heaven in general and people who live there that we know/knew but that is about it. I'm not sure what else to add to it to that will prepare them for what is to come.

Please pray for our family in the upcoming weeks/months/years.

Tuesday, November 22, 2011

Thee appointment

To follow up on yesterday's post, today was another harsh day; might qualify as thee day.  I went in this morning and had a CT scan done to see what was really going.  The huge jump in my tumor marker caused some worry.  Michelle and I met with Dr. Hamm this afternoon around 2 at his office downtown at Norton.  He didn't have my scan results back yet when he came into the office but it was because the scan was only done a few hours earlier and it takes sometime to get those back.  We discussed treatment plans and talked about the Vandy experience for a little back.  He then went back and checked and had the scan results back in hand.  The results were every spot and tumor I had has grown in a significant manner.  There were an estimated 20 something spots in my liver (though some may not have been cancerous).  That's a lot.  It was compared to my last scan at Norton which was September which was about 2 months ago.  The underlying result: it's growing and it's growing pretty fast.  All cancers are different and one notable characteristic is that when PC is growing, it's pretty bull-headed.  There are countless stories of people being diagnosed and not making it a week.  It typically doesn't stop to ask for directions.  I then went ahead and asked the tough questions:
What is the chance of this treatment working and what should I expect?
Basically, while there is a chance things could stop growing and actually shrink, a more realistic hope is that it will slow the growth down.
Is this really my last treatment option because I've tried most things?
If my weekly treatment does work to a degree, I can add the abraxine maybe in a month.  I mentioned this drug in my last post and that drug can maybe even more help slow things down.  But basically, trying anything else, wouldn't be too smart because you are making yourself miserable in your last days.
If I don't do a treatment, what are we looking at?
"You don't have much time." We discussed this a little more because they underlying question unasked was, what really are the chances this next treatment is not going to work based on how aggressive this cancer has become?  I know the answer...higher than it actually working.  I've learned so much about PC, it is relentless.  We aren't close to figuring it out in general.  I am still optimistic this treatment may put up a fight and buy me time and I will fight that fight.  There is so much riding on this first treatment which will be next Monday morning.  If I'm getting sick, it will mean my cancer is pretty mad.  It was very mad at me this past weekend, hopefully it will lie down and rest this next go around.  A lot is going to be determined very soon.
I also have that not so good feeling.  My digestion is horrible right now and I could only eat about 1/4 of my dinner tonight.  Was it a bad day or is it because my digestive system is shutting down?  My pain has progressively got worse over the past month.  I'm in urgency mode right now.  I want a great Christmas with my family.  I'll take the prayers right now but mine are focused on Michelle.  I've told her I have all the faith in her to make it through this.  What she's got faced in front of her is a mountain but I strongly feel if anyone can do it, she can do it.  Please pray for her.  For strength, for confidence.  3 girls are a lot but those 3 girls are remarkable.  They rally around her when they sense I'm down.  I could go on and on but right now, I just want to comfort her so I'm signing off for the night.  Have a happy thanksgiving if you don't hear from us tomorrow.  I still have a lot to be thankful for so I'm going to try and enjoy the day.

Monday, November 21, 2011

Some bad news (but now that I've finished the blog and know what I wrote, some good news)

We've got some updates on what has transpired over this last week.  I ended up in the ER on Friday after my treatment last Thursday due to continuous vomiting that was literally sucking the life and weight out of me.  I was down to 132 lbs before I left the house.  It took the hospital about 12 hours themselves to be able to get things to stop.  We didn't know what was the cause as it could have been been the recent chemo treatment (though it hadn't effected me that way on previous ones), the cancer itself, a combination of too many meds or a possible virul infection.  Due to blood tests not showing too much out of the ordinary, the hospital doc literally had to guess that it was probably something virul.  I was willing to accept that because it meant it was maybe a one time thing and things were still going all right.  I messaged my Vandy doctor on Sunday evening after getting home Sunday afternoon to let him know how my weekend went.  I was expecting to here from him on Monday by telephone because he was going to follow up with me regarding my tumor marker number that was drawn by blood before my last treatment.  He called me today and was quick to say that it was most likely a reaction to the chemo.  My tumor marker jumped from 270 something (I believe) 4 weeks ago at the onset of my new treatment to the current number of 681.  I was at 70 something about 2 months ago.  My highest number ever pulled was mid to upper 300's which was when I was first diagnosed.  The conclusion is the clinical trial is not working.  The only positive from today is I no longer have to put together weekly treatments to Vanderbilt.  I wish it would have worked but it what it is, I don't regret things in hindsight.  I am having a CT scan in the morning which should confirm things and I get the results back tomorrow afternoon.  The recommendation by my Vandy doc who still wants to be involved in my treatment (which I appreciate, because he's probably the best one for me) recommends I go the standard gemcitibine treatment.  This is the treatment that is usually given first to anyone diagnosed.  It's results are mixed, it can be very beneficial, it also can not to do too much.  These days, the most common thing to do is gemcitibine and add another drug as a complement.  The 2 two most popular drugs are tarceva, which has a lot of data and is said to add some value to the treatment, and another one is abraxine, which does not have a lot of data but shows some more possible value than tarceva in it's briefness of being studied.  Abraxine is used a lot with other cancer therapies like breast cancer but has not been studied for a long time regarding the pancreas.  He told me that because of the shape I'm in, he'd recommend I do gemcitibine alone briefly and allow my body to build back up and then add abraxine shortly down the road.  He gave the stat that 27% of those that take gemzar (abbrev for gemcitibine) and abraxine realize grade 3 fatigue which means it's hard to get up the next day and brush your teeth.  Gemzar by itself is probably, on average, the therapy with the least amount of side effects.  That part sounds appealing but I'd feel pathetic if it knocks me down hard.  Gemzar and abraxine on average is also pretty tolerable regime.  The wish and prayer is this next round of treatments works and is tolerable.  Part of the scary thing is we are reaching the end of viable treatment options.  I will be worried if the next months do not go well.

So, things have been real but are getting more real for me.  My body right now is not in the best of shape though I'm not supposed to complain because I can function well most of the time.  I'm still experiencing pain and my stomach makes me afraid to leave the house sometimes if I'm going out.  The pain is coming from this damn tumor.  Michelle and I are so used hearing not fun news so today hasn't been earth shattering.  I got in my 15 minutes of laying down by myself and I got to relieve my emotions.  I don't believe Michelle has had time to get her brief moment in.  Typing this long post makes my back hurt and I hate that.  It kills me to not know if this is another bump in the road or I've reached the top of the hill and I am going to start to coasting.  I'm still obviously positive but my cancer may have complete disregard for my attitude.  I've got to admit, especially when I'm in pain or getting sick, that dying does not sound like the worst thing in the world.  It absolutely pains me to say this.  I'm still not scared to die, I know where my home is.  I just hate that I can cause pain and anguish in the people's lives that have the highest amount of respect for.  I hate that.  I absolutely hate that.  I never want to hurt my kids and I never want to hurt my wife who has put her whole life into me.  I hate hurting my friends and family.  I hate that when my day comes, many friends, colleagues, etc will have to sit at work and just shake their heads and ask why does terrible stuff like this have to happen.

I know one thing and it's the most important thing I feel deeply about to my core, God did not stand by and choose not to prevent to let this happen because he doesn't care.  He will allow this to happen because this place is not my home.  My prayer and my begging is that someone will know me and choose to meet God because I opened a door for them.  To me, if one person sees my faith and TRULY seeks out God because of me, I've lived a fulfilled my life on earth because they will find their everlasting home.  I also know one other thing, I have always believed in God since I can remember.  I also remember when I actually made a commitment to trying to be a godly person and seek to fulfill His mission here on earth.  It was in my twenties when I started a family and I owe it to my wife.  My wife is the person that really brought me to Him and words do not express how grateful I am for her.  She truly helped make my light bulb go on.  My church took it from there but many people have that person or that experience and I am so lucky I got to experience this.  My question is do you A) just believe in God and try to be a good person or do you B) have that confidence deep down down in your heart that no matter what, no matter what, you don't have anything to really worry about.  If you aren't at B, you are missing out, it is truly awesome.

Sunday, November 20, 2011

Update11/23

Craig will probably be released today. We will not know the cause of this episode and since there seems to be a difference of opinions I won't weigh-in with my opinion.
With God's love and patience we are moving through this bump in the road.
We will touch base with Vanderbilt tomorrow to get the results of the tumor market they pulled Thursday. If it is still evaluated in the 200+ then we might move the scan up to ensure this treatment is getting some results.
Will update more later.

Saturday, November 19, 2011

ER on Friday night and admitted for the day Saturday

We went to the ER with Craig Friday evening for continuous vomiting, nausea, and pain that wasn't able to get under control. He was admitted and will stay there again tonight until he can eat without vomiting and the pain is manageable with the pain meds at home.

The cause of the sudden evaluated discomfort could be the cancer, the chemo or a simple stomach bug. We shall see.

Thursday, November 10, 2011

Following Up

Starting to get the emails and the questions so I guess I need to follow up on what's been going on with me lately since I never posted after the last treatment last week.  Last week was the same as the first 2 treatments at Vandy.  I handled the chemo session well, walked away feeling a little icky but it was a huge breath of fresh air compared the days in the past.  The following day started out fine again but my stomach turns sour usually in the middle of Friday and it is very uncomfortable.  It's nothing pain medication can control.  It hurts to get up or stand up and it doesn't hurt as much when I lay down but it's still very uncomfortable.  It lasts through about 2 more days with some relief off and on over the weekend.  Truth be told, I can handle it.  It's still a lot easier than the past treatments.  I at least have my mind in the game where I can talk and watch tv and spend time with the family.  Michelle and I were guests of our friends Chris and Janelle last Friday night and I ended up laying on their couch for the evening and fell asleep.  Wasn't my proudest moment but they are good friends and understand.  Each day after the treatment is just a roller coaster.  As far as the treatment goes, this is my 4th week which means...NO CHEMO.  I live for these weeks.  I feel half way normal.  I'm still having the pains and taking pain medication around the clock.  I'm OK with that even thought its frustrating I still have pain and I'm taking 2 different pain meds on their regular schedules.  You always envision being in that la-la land when on those meds but I don't get that, unfortunately.  Anyways, I'm off treatment this week.  It worked out I'm actually off work tomorrow for Veteran's Day.  Thanks Veteran friends (for your service first and foremost)!  Is the treatment working or when will I know is the most common question I'm getting.  We don't know if it's working.  We'll do treatments the next 3 weeks consecutively and then December 15th, I'll have a CT scan and we'll pull a tumor marker that will tell us the verdict.  If it's working or things haven't changed much, I'll continue on the treatment for another 2 months.  I hope it's working obviously.  I will say the treatment, if working, should start alleviating this pain.  It's not alleviating the pain but I also need to be patient.  That's the story for now.
My presentation to Oldham County Fiscal Court for the Pancreatic Cancer Awareness Month Proclamation went very good.  The presentation is shown on the government channel here in Oldham County over and over and a few have got to see me on tv.  I'll give myself a B, I said um a few too many times which I um didn't realize when I was given the um presentation.  Michelle said that would have made a good drinking game back in college.  It was and is great awareness which was my goal of doing the presentation.  I reached out to the Oldham Era newspaper and they happily reached back out to me to do an interview on a possible story.  We'll see what that leads too but I'm all about spreading awareness and hopefully using my story for good.  I'll let you know what this leads to.  It was an emotional interview.  I've shared a lot about the disease with many people and am well versed and knowledgeable on the subject but as soon as the questions change gears and the words kids or family are mentioned, I break down...just like the flip of a switch.
Chicago, one of my favorite places, is turning their skyline purple for the month of November for PC Awareness Month.  I haven't got to see a picture yet but I hope to find one soon.  I love the Chicago skyline as it is.  It's a little sentimental for me.
Um, I guess that's all I've got for right now.  That's all the stuff on the surface.  What's below the surface?  That might be another post.  I love my wife, I know that.

Wednesday, November 9, 2011

anxiety has gotten the best of me lately

The past couple weeks the anxiety of this disease has gotten the better of me. It is extremely stressful to see someone in this kind of pain. It is hard to plan for it when it hits when you least expect it. It is hard to plan family outings or figure out if I am going to be doing the bedtime routine on my own or have help. It is stressful to hear the heavy sighs or painful groans and not knowing what they mean. We are unsure whether the abdomen and back pain is from the treatment, medication or the growth of the cancer itself. It is really stressful keeping the "what ifs" at bay.

I haven't done thankful Thursdays or anything like that b/c I am exhausted to be looking for the silver lining. I know that we have a lot to be thankful and I have not lost the faith but I am tired. Even Jesus took time to rest. It is not the kind of tired that I need a break or to get away. It is just the kind of exhaustion that allows honesty to settle in. I have wrote and re-wrote this post. I can't quite get into words why there is so much pressure on the day to day of this disease. I think I am going to just move on and post this or I will never get it posted. I don't think that words can describe where I am right now.

http://www.southeastchristian.org/?page=3476&project=116707&program=514253

Last week's sermon is a great one. Very challenging but a great message for each of us.
Nice vs. kind and compassionate.
Which path are you are today?
Which path are you following?
worldliness? or God's path?

Monday, November 7, 2011

Gungor "God is not a white Man"



This has nothing to do with cancer. But this video makes me laugh every time. Slightly fitting going into election day. I don't want to open a can of worms on politics, I just thing this is cute. So often we try to fit God into our agenda when really we should ask Him what our agenda should be for each day. 
My favorite line is "He will not be boxed in."
He is not limited.
Enjoy. :)