Derby Week: Dawn at the Downs

In this picture from left to right: Uncle Frank, Aunt Marianne, Craig, me, Emily, Morgan, Uncle Jim, and Aunt Kathy

We had a great time with some family at Dawn at the Downs yesterday. The girls didn't get to wear the sundresses we picked out the night before b/c it was so cold when we left the house but it was a great time. We love derby week in Louisville!!

Go Baby Go!

Derby Week: Mini Marathon by Janelle Richardson

Jamie, Chris, Janelle & Scott before the Race

Craig with Jamie & Scott after the race

Chris & Janelle after the race with their medals

 

When Michelle asked me to be a guest writer after Louisville's Derby Mini Marathon, I thought "what the heck will I write that won't bore you to pieces".  I tend to be long winded when I write and didn't want to make this all about me. BUT the Merimee's have been a major part of my running success.

Last year, 3 months after delivering my 2nd baby girl, my Gastroenterologist found a mass on my colon during a routine colonoscopy.  Luckily, the tumor was only precancerous and a foot of my colon was removed with surgery. After that terrifying cancer scare, I made a vow to myself to start taking better care of my body by eating healthier and exercising.  Months later, I'm sitting in a hospital with one of my best friends after she gets the diagnosis that her husband has stage 4 pancreatic cancer.  You never think these things can happen.  After all we were only 32, in the prime of our lives, married with little kids and considered ourselves pretty healthy.

Let me be clear, I was not a runner.  I didn't even really like exercise.  But I was motivated by Craig's and my story and stepped onto a treadmill even when I could barely run a mile without feeling like I was having a heart attack.  I challenged myself to run 3-4 times a week if I liked it or not.  My husband, Chris, and good friend, Sarah, encouraged me to sign up for all 3 Triple Crown Races plus the dreaded 13.1 mile Mini Marathon.  I joined a running group in the middle of January which committed me and held me accountable.  I got up at 6/6:30am every Saturday to run outdoors with my group, even on days when the wind chill was 8 degrees, there was snow on the ground and no one else from the group showed up except the coach and I.  I ran when my allergies acted up and I felt like poo, I ran when I was tired from being up with a baby throughout the night, I ran on my treadmill when it was raining or sleeting outside and I continued running even when I wanted to give up. 

My training was tough and inconvenient at times.  But my friend was going through a much tougher & inconvenient time in his life.  Why am I complaining???  I have my health.  I'm not hooked up to receive chemo. I'm not fatigued in the same capacity as Craig.  Every time I stepped on that treadmill or sidewalk, I thought of Craig, Michelle & those 3 beautiful girls.  It inspired me to keep fighting.  After all, Craig was fighting.  I realized we were both pushing ourselves, not through a sprint, but a marathon.  I wore my purple band around my wrist on many runs.  When I would feel like I just couldn't climb one more hill or take one more step, I would look down at my wrist and it would be enough motivation to keep me going.  I had lots of time to think while running.  I've probably spent hours thinking about Craig & Michelle, cancer and how their lives have changed.  Many runs, I would get choked up and find myself uncontrollably crying.

A couple months ago, I thought it would be a great idea to create a shirt I could wear during the Mini Marathon to bring more awareness to pancreatic cancer. Around the same time, our friend, Scott, mentioned the same idea to me. So last weekend Chris, Scott, Scott's neighbor Jamie, and I wore our purple shirts to the Mini.  They said, "Think the Mini is hard...Try Cancer.  Pancreatic Cancer Awareness".  You wouldn't believe the attention we received with these shirts.  One women came up to me before the race and told me about someone she knew that had pancreatic cancer.  She thanked me for wearing the shirt.  This is just one example.  All 4 of us received numerous comments from total strangers. I knew people were looking at our backs.  After all, there were 15,000 runners and you spend a good amount of time staring at people's backs while you're  running.  While a very small step in the right direction, maybe we were bringing more awareness to this cancer!

And as I approached mile 7 around Churchill Downs, I felt that feeling I've felt many times before.  I'm tired, I'm hot, I'm thirsty and my legs hurt.  But I knew Craig, Michelle, the girls and our friends, the Deitz's were right outside of the Downs on mile 8 and I must keep running.  And as I saw them cheering me on very enthusiastically, I suddenly felt the energy to keep going.  Yeah, I'm fighting!  I'm going to do this!  I will not stop to walk!  I will cross that finish line! And like angels, they all appeared again, this time yards away from the finish line when I really needed them.  I got a little emotional and my sore legs carried me across that finish line, my arms high in the air. 

Sometimes bad & scary situations help you realize what's really important in your own life.  They help you appreciate what you have, specifically your health.  They help motivate you to do tough things that might improve your health. And they help push you to achieve your own goals.  Life is not a sprint, but a marathon.  Thank you Craig for joining me mentally and emotionally on all my runs.  I credit you for pushing me beyond my wildest dreams from mile 1 to mile 13.1!  I hope to be running to raise money and more awareness for pancreatic cancer one day!  I will not let this cancer go unnoticed!  Keep fighting, Craig!  And I will be with you every mile of the way!

Very strange place right now

I have to say this is a very strange place right now. Not my house itself but there are a lot of things that are really normal right now. We are not centering our schedule around chemo. We are not deep in research. There is not a cancer schedule on the frig of CT scans, chemo dates, nuelasta shots. The girls aren't wanting to read books about cancer every other night. It is oddly normal. But there is still a sense that it is lingering that we can't shake. Not the cancer itself but this oddity that we will never have the luxury of just being left alone by this beast. There will be a day that it will rear its ugly head and have to be dealt with in the same fierceness as this past 6 months. We really haven't decided what the next steps are. Dr. Hirandi was going to call Dr. Berlin at Vandy and put their heads together. We talked with him Thursday of last week and voiced our concerns about starting any treatment with Gemcidibine since that might bump us out of a clinical trial with Gemcidibine in the mix. So he wanted to touch base with the smarties down at Vandy. He is going to call us Monday or Tuesday. We do have a CT scan on the schedule for June 4th for now but who knows if that will stay there b/c that is the next step in the wait and see plan.

Anyway. This is an odd place to be in. Should our goal be to be as normal as possible? Does that include Craig going back to work? I don't know the answers here. We can't live like the other shoe is going to drop at any moment but then how do we live? You can't ignore it. This cancer will have to be dealt with again. One doc said as soon as 4 weeks, one said up to 6 months. One says keep doing chemo so it stays at bay. The other says stop chemo and build strength so you can knock it out again. So what do you do with that? I would love to say pray that it just goes away but I am not sure that is realistic. I am not saying don't pray that way but if it does come back does that mean He didn't hear us? No. His Will be done, regardless if He chooses to answer in away that we wish.

I can say that each prayer along the way as been answered in some form or fashion. For example the first week my mom prayed for someone positive to walk into the situation. Answer: Kim, the recovery room nurse after the port procedure. Fast forward 5 months: mom prayed that something good would happen, something fun would happen to us that day. Within 12 hours Carla posted on my Facebook wall: "Do you want to go to the Final four in Houston?" rewind 15 years: I had come home from UK for the weekend and mom was asking me if I liked it there. I answered yes but I am a little lonely. I think I want a new boyfriend but not until January but I think I am ready to date someone seriously. Within a month I had met Craig.
Morale of the story: be careful what you ask my mom to pray for. It is like rubbing a genie in a lamp! :)
All jokes aside, our prayers have been answered over the passed six months. But now what? Yes of course continue to pray for our miracle. I do believe in miracles but more importantly I believe that God has a plan for our lives. I hope it is a plan with continued healing but how close to "normal" does that plan get?

There are days that I am empowered knowing that each thing that happens to this family goes through His hands first before it touches us. I am empowered knowing that God has a purpose and the purpose for this may not be known now, it may never be clear ever but it is empowered to know that He has a plan.

"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

Several weeks ago there was a sermon at SECC that was about the meal where the woman who lived a "sinful life" poured her perfume on the feet of Jesus and washed His feet with her hair. Kyle preached on Luke 7. What an amazing story. As he wrapped up the sermon he threw out the question are you more like the women with the sinful life or are the pharisee that just goes through the motions of religion b/c that is the way that you were brought up? Are you just checking things off your list of obligation or are living a life for God like the "sinful women" was? Are you someone who knows about Jesus or are you someone that knows Jesus? I walked away that night feeling blessed. Because of cancer in my house I don't have the luxury to just go through the motions of religion. I talk to Him more than anyone on this planet. It is not just a weekly check in so see what's up, or a simple prayer at the dinner table or a Sunday visit to the closest church. It is a conversation.  Some days it is please get Craig through this chemo treatment with minimal side effects. Some days it is what I am I going to do in the future? Some days it is what do you want me to NOW!? Some days it is thanks for all you have done. Somethings I won't even type or speak about. But He knows there are some days...

There are cancer survivors and caregivers out there that write letters that start out "Thank you cancer for..." They write about how they have a new lease on life and they see how people care and love them. And I see that but let it be crystal clear, I will NEVER NEVER NEVER write such a letter. Thank you for nothing cancer. Get out of my house, you were never welcomed here!

BUT I have no choice but to be the woman in the story with the "sinful life". I have a vulnerable life that is hanging on by prayers. I don't have the choice to be Simon in the story. What a blessing! Never thank you cancer but thank you adversity that makes me cling to my Savior and have the kind of relationship that brings love, hope and healing into my house! I feel empowered knowing we are living His plan. Although it is not an easy plan to live it is His plan and somewhere in this mess He is planning prosperity for us. I definitely do not get it. The week of the last ERCP I was pretty ticked off at His plan. We walked in thinking that one was going to be different. Craig was feeling good and he was going to bounce back. No such luck. After three hours in the recovery room, nausea on the way home, vomiting at home, fatigue, down for the count again and a call from school, 2 out 3 kids with fevers, I HATED His plan. I was not empowered I was ticked and saddened. This was not what I had planned!! Raising three girls and staying married to my polar opposite was enough adversity for one to stay close to God. This cancer stuff is not what I needed.

In faith we seek Him and we learn to prosper in the plan that He hands us. I am not sure when the prospering starts but I do know that I have new courage to be there when people hear tough things like, "cancer" and "6 month" to live. It doesn't scare me to reach out. I have an experience and I am not afraid to share and be out there (well maybe a little some people don't like to hear about God for some reason). I am sure that is part of His plan in the future. Unfortunately it seems that this disease touches more and more people. I can be there. I get it. I don't get what it feels like to embody the disease but I know what it is like to have in your life, take over your life. So there has to be more to this than just getting through. We shall see where this leads...

So this month we have been challenged to read through Proverbs. One chapter a day for 31 days.
There was a quote in today's sermon that perfectly described where we are.
"We are drowning in information but starving for wisdom and knowledge"
So Proverbs is fatherly advice for all us. Each day a new chapter and at the end will be know what to do next, hopefully somewhere in the middle or maybe even Monday or Tuesday of next week we will know the next steps in treatment but this journey is more than just a chemo plan. So through this exercise of a chapter a day, will we find wisdom? We know the docs have plenty of information but we knew that God was going to have to tell the next step. So maybe this is a good place to find it.

Proverbs 1:7 The fear o the Lord is the beginning of knowledge, but fools despise wisdom and discipline.

Okay so that was WAAAAAY longer than I had ever anticipated. Sorry. I was actually going to blog about our awesome weekend. oh well.

Upcoming post:
Walk in Indy on June 25th - we are getting a team to go, ROAD TRIP baby!!!!
Mini-marathon - guess blogger and pictures to come. So proud of our runners!
Art therapy - some pictures the girls have done in art therapy - I have to ask them first. hang tight on this one.

Easter Pictures

Dying Easter eggs

Hannah's First Easter

She loved tearing into the Easter basket.

Hunting for eggs in the kitchen

Happy Easter!!

She is so darn cute. Ha. I love this picture.

Everything is stable

We got the results back from our CT scan.  Basically everything stayed stable or the same.  In reality, stability is good right now in this stage of the game.  Sure, we would have loved to have seen some more shrinkage but stability is good.  The CT scan is really just one piece of the puzzle.  It's a picture of things.  The spots and the tumor could actually be dead and just showing in the picture.  The other pieces of the puzzle are the tumor marker, how I feel, how my body is digesting food.  Well, I'm feeling very good now and the best I have since my diagnosis.  My body, without being technical, is digesting food very well.  I have no pains and have not taken a pain pill in months.  We got our tumor marker for the day and it's 25.  It was at 13 but 25 really isn't anything significantly different and is still in the normal range.  So all in all, the picture being painted is good at this current time.  The good news is my scan did not show any growth of any kind.
Dr. Hamm is actually sticking to his guns and recommended I get off of treatments, do another CT scan in 6 weeks and go from there.  This is what the normal course of action is, do we want to go with protocol?  The rationale, from his view, is it gives my body some time to recover from getting beat up.  He also believes I got the optimal amount of chemo out of this drug combo.  As Michelle put it, why spray bug spray on a dead bug?  Well, the question is how dead are the spots.  He did say that things can't really get out of hand in a quick time frame of 6 weeks.  So in the event things get worse, we shouldn't be in a horrible spot.  As we walk away from every appointment, it seems like the last thing we heard is the best idea.  We really aren't sure what we want to do.  All of the options are viable options and all have their benefits and probably none are bad decisions.  We tentatively scheduled a CT scan for June 6 which would be 6 weeks.  We can cancel and go a different direction if we so choose.  We have to send a copy of the scan to Dr. Berlin down at Vandy so he can give things more thought.  We also have a follow up appt with Dr. Harandi on Thursday.  We still have a lot to think about and we are really going to have to go with what we think God is pointing us in the direction of.  Maybe he is still thinking because nothing has been jumping out at us.  We'll continue to ask for prayers that give us some sort of direction.

Jesus Paid it All :: Worship Video w/ lyrics

Craig just got back from his scan. We will get the results tomorrow at Dr. Hamm's office.

More to come:
-results
-Easter pictures

Pray for an empty scan.

Hope you had a great Easter. The service at SECC was extremely powerful. He has good news and He has the power to heal. This was the final song of the service. Hope you and your family had a wonderful celebration of Christ's Resurrection. He has paid our debt. It means so much that regardless of His plan for us on this earth He has even greater plans for us for all eternity.

Recovering from ERCP

Today went fine as far as the procedure was concerned.  The doctor pulled out the 2 stents I had in place and put in one new metallic stent which should last me 6 to 18 months.  I went in at 8 and I was released to go home around 1:30.  The anesthesia got me when I got home and unfortunately made me sick.  I was hoping for an easier recovery but ended up pretty much sleeping in bed the entire rest of the day.  I still feel a little queazy and didn't get to eat much at dinner tonight.  I think tomorrow will be better.  Next appointment up will be CT scan next Monday.

ERCP

ERCP is tomorrow (Monday).  That's my fun outpatient procedure where they put me to sleep, stick a tube down my throat and into my digestive tract and replace my stents.  I currently have 2 in place but it's time to replace those with new ones.  I think they'll put in some longer term ones that won't need to be changed for 6 months rather than my usual 3 month timeframe.  This will actually be my 4th ERCP.  It's surprisingly (knock on wood) not that invasive as a procedure.  I never have a sore throat or anything, just have to go on a liquid diet for a day.  My doctor for tomorrow, Dr. Vitale, is kind of the rock star in Louisville for these type of procedures so I believe I'm in good hands.
I bounced back pretty good after this week's treatment.  I'm worried about about my feet and hands as they seem to have gotten worse over the last week.  It feels like I'm walking on 2 bricks unfortunately and is annoying.  They don't necessarily hurt though if I'm resting them so I'm thankful for that.  To my understanding, things can get worse by having constant pain.  It feels very akward to even type this because my fingers don't have a lot of feeling in them.
I stayed in for Thunder over Louisville this year and Michelle and the girls went down for part of the Air Show but returned after being out in the cold temps.  We watched the fireworks from our TV and glad we stayed in.  I am excited it's Derby time of year.  I love the Derby and always look forward to playing of My Old Kentucky Home right before the race.  I'm looking forward to Easter weekend with the family.  I'm looking forward to going to see a few of my friends run the mini marathon, I'm proud of them for their hard work and training.  There seems to be a lot going on this time of year.  I dreaded this whole winter and anxiously waited for Spring to break.
O yeah, this last treatment was my 12th and final treatment of this regimen.  It's not really the end of chemo but I have been counting down to #12 for the last 6 months.  I have my CT scan in a week and that will help determine what my next step is.  It's nice to finally rest (somewhat) and not have a treatment looming though I know one is around the corner.
As we approach Easter, it's important to remember why we celebrate it.  To me, it means the world to me what Jesus did.  He is the reason I can hold my head up high through this mess.

Don't forget to pray

Dear fellow prayers,
Please add our close friends to the list of people who need prayers. We have quite a few friends that are like family. Their hearts break as much as our each day sometimes more since we are immune to situation at times. Please pray for our support system that they find peace and joy each day. We feel your prayers each day and we want our "peeps" to do the same.

Thanks for all the support,
Michelle

PS Craig is fatigued this treatment but good. I'm good. Girls are good.

So what did Vandy say?

First there is not one answer to the question on what to do next we have definitely found that out. There is not a right and a wrong on the steps. There is not a black and white, one size fits all answer to this disease. I guess that is what makes it so hard. We went to Vandy not looking for an answer but more options and boy did we walk away with that. Dr. Berlin is the doc that we met with at Vandy. He is ridiculously intelligent. The more we asked question the more answers came with additional questions. He talks about the pancreas like Craig blogs, in one continuous paragraph. He is a fountain of information about the pancreas and cancer in general. He is not just the one that does clinical trials but the one that writes them, gets them funded and does seminars on them. He is the man with the pancreas plan.

He is also on the board of the PanCan organization. He added fuel to the fire b/c so much of his research is sitting waiting for funding. He even went so far to say that it wasn't the politically correct cancer to fund. A lot of times it comes down to a cancer that is close to a congress person's family. Breast cancer and prostate cancer seem to remain their favorites to fund since they hit home more often but he said in the coming years that will change for the pancreas. They have seen an increase in the amount of case. The number maybe have to exceed the favorite cancers to fund before it gets the attention it needs for approved funding. He even said we just have to get you to that point. Well there is some raw medical hope.

Usually when I ask "what would you do next?" we get a pretty clear answer step by step. Dr. Berlin said he would do a clinical trial with him. So if you are keeping count at home, that is yes FOUR different opinions. He did say stay on some form of the foliferinox until it stops working or we can get on his trial. He did admit that he had a bias since that is what he does, research. He recommended that we drop one of the drugs b/c after 9 minutes it doesn't effect the cancer but the side effects last 3-4 days of fatigue etc. How does he know exactly how long the drug works, I have no idea but he is sooooo smart so I believe him.

So there you have it, the smart researcher recommended a clinical trial.

We do plan to make another trip down there to have them pull more tissue from the cancerous area to run a "panel" so they know what kind of pancreatic cancer it is. What kind of cells it effects. He named what it could be and of course I can't pronounce or spell any of them so I won't bore you. But it was interesting to hear someone talk in such detail about the disease. Comforting in some ways and disappointing in other ways. How can the "experts" know so much but still not have the perfect answer for this disease. I guess I answered my own question when talking (ranting) about the lack of funding. This of course is a very complex cancer and very aggressive. The treatment that seem to work are too toxic to be able to stay on for a time period that is effective.

We don't know what we are going to do but we probably won't decide until the last CT scan which is in two weeks. I think I have come up with a great plan on how to decide. Craig gets to pick the treatment plan since it is his pancreas and I get to pick the doctor since I do most the talking. We shall see. It boils down to whatever God tells us to do. So continue to pray for guidance.

I'm sorry if this post sounds so negative. It was a long day and chemo is tomorrow. It is what it is.

We really are doing very well. We are thankful for the progress so far and the good days that Craig does have. Sometimes I feel guilty for being okay. It is like I am not doing the issue justice without flipping out all the time. It just isn't productive. This is simple a part of our life right now. We are still so privledged to live in the neighborhood we do and live the life we live. I am so spoiled with blessings I am not going to let this cancer get in the way of being joyful. Do I hit the wall somedays? yes. I would like to figure out how to get rid of the guilt of being okay and taking this one day at a time. It is draining to try to figure out how to react to this and not just be hopeful and keep moving on.

ramble ramble. I think I am going to bed now. I am just rambling.

I can't be two places at one time.

I haven't posted in a while b/c honestly I have been too busy this week. I needed to be at at least two places at one time the majority of this past week. My mom was sick and I won't go into too much of the details but it was a tough week.

After a week of being torn between so many places we didn't have much to do today and I was really glad to do not much of anything. I ran to Target to help the Easter bunny out a bit and we waited for the rain to stop and broke out the rain boats. Fun stuff. Hannah thought it was funny to watch her sisters walk through the puddles. We went to church was great to be back at the Blankenbaker campus.
We came home and the girls road their bikes in the driveway after dinner. Morgan is finally getting the hang of driving the Barbie jeep, although she ran into the house and over my foot so she is far from perfection but she has driving in circles and giggling down pat.

So really I am not saying too much on here. It has been an exhausting week and I am really thankful for a really normal Saturday with nothing to do but whatever we wanted.

We are leaving for Vandy tomorrow night so we are there for our early appointment on Monday morning. My dear friend Liz is staying overnight with the girls since my mom is out of commission for the time being. It really is amazing the way our friends jump in when we need help. Every time someone does something wonderful for us it is like God himself is doing it. He provides in so many ways.

I really want to get pictures of the final four posted so that will come soon. Emily drew a picture of the game with such detail. I need to scan it. It is soo cute. She drew the players and the baskets and the stands. Very detailed. Morgan drew a picture of "the love" for us. She is more of an abstract artist ;). These were things that we received when we returned from Houston. I think art therapy has done them a lot of good. Morgan especially has been able to identify her feelings and seems really comfortable doing it when she is doing a little project like play dough or drawing. Just like she does there.
I talked with their therapist Friday and I said Morgan seems okay on the weeks that are not treatment weeks but she really doesn't like when Craig is down and out. I told her of course that worries me for the future b/c now it is just 3 days after chemo but eventually it will be lifetime. Then what? The therapist (her name is Eileen) says you will continue to use the resources that are available and these things that we are working on now will better equip them for anything they face. That is great way to look at it. I do get down thinking of all they have witnesses in the past 6 months but some of this will help them cope better in the future. Is it the way that I wanted them to learn life lessons - NO! But that being said they have already gotten over their fear of hospitals. When I had Hannah in June they were so scared to come see me in the hospital. Friday we went from art therapy at Norton Suburban to see my mom at Norton Brownsboro (oh good times, let me tell ya), when we turn the bent we look for the big blue "N" on the side of the building. Morgan spotted it and said "this is the best day ever!" Now it was probably b/c she got to play with play dough and we drove with the windows down but none the less, she is not scared of hospitals any more. What a great life lesson. Not to fear going or visiting people at the hospital. It is simple a part of life. Heck maybe one of them will be a doctor or a nurse or an art therapist b/c of their life lessons they learned at such a young age. I may be getting ahead of myself but I do pray for their hearts. May they continue to grow and be the people that God wants them to be even through adversity.

So the girls are good. Hannah is so stinkin' cute it is hard not to just kiss her all the time. She is cruising down the couch and she can stand for about 5 seconds w/o holding on.

Craig and I have talked a little about next steps but I don't really feel like I am in a good place to make my vote heard. I am way too tired to say much of anything. April 4th was 6 months from diagnosis so our miracle started on the 5th. Each day from here on out is a miracle. He mowed the grass today and that really is a miracle that not only is he alive but feels good enough to take care of three kids and mow the grass. It is tough to think that we are already on "borrowed time" but really who isn't. God only knows the day and the time. Although the stats say that Craig will not out live anyone he knows but maybe a few, only God knows. He could outlive us all. We just have to pray that our miracle can be counted in years rather than days. Although years add up one day at a time. So when I say we are day to day, we are in so many ways.
I told God at church today that as soon as He gave me years I would start asking for decades. He kind of figured that. But I will say it again, I need him more than you God. Emily needs him more than you, Morgan needs him more than you, and Hannah needs him more than you. Aunt Janie needs him more than you. Mammaw Lucas needs him more than you. Patty and Kristen need him more than you. BB&T needs him more than you. My family needs him more than you. His friends need him more than you. So let us keep him years, no decades, one day at a time, let it add up to a lifetime.

So prayers for next steps and more NORMAL days ahead. many more days ahead.

3rd Opinion

We got our 3rd opinion yesterday from Dr. Sharma.  He's head of the GI dept down at UofL's James Graham Brown Cancer Center.  He's the guy that runs things and teaches the fellow's that go through UofL's medical program for GI stuff.  He's an opinion I very much value.  He first suggested that we switch to a different treatment which was called Gemzar GTX which is a different drug combination than what I am on now.  The more we talked, he actually changed his recommendation to continue what I am now on which is called folfiri.  If you remember, I was on folfirinox but we dropped the "ox" drug because it fried my fingers and feet.  The rationale is if this is working, why switch to something else.  This does make sense.  A friend of a friend that does this work down at MD Anderson in Houston actually had suggested the same thing.  We've just talked through email with this doctor but this is the first time we've had anyone agree with another doctor.  So far here are options:
1) wait and see - we've pretty much decided this is not best
2) Gemzar and tarceva - the least toxic approach but is a weekly treatment, not as potent but some potency is probably needed.
3) Gemzar GTX - given every 3 weeks, more potent than #2 option, not as potent as my current treatment
4) Folfiri - what I am doing now, maybe the most potent; I'm familiar with it and now what to expect from it; it's worked
5) clinical trial - not sure this is really an option right now as I probably won't qualify for one; I'd have to be regressing which thankfully I am not.

We're going to Vanderbilt on Monday and I'm very much interested in what they have to say.  I will very much value their opinion as they are some of the best in the "biz".  Right now, I'm leaning toward #4 option because it does make sense to continue on what's working and squeeze that dry as long as I can.  I'm curious and haven't asked but if toxicivity is a concern to the doctor to continue on this current treatment, I wonder if doing it every 3 weeks makes more sense than every 2.  I still need to really get a feeling from my current doc.  We've briefly discussed what's next but he's not going to give his recommendation until our appt on the 26th which will include info from a CT scan scheduled the 25th to see what's cancer is still left.  Would be cool if there was none, but even if that's the case, we'd still go through a treatment option because I will never be considered cured as this type of cancer pretty much always resurfaces.  Continue to pray we get good get information and we make the best decision for me and my family so I can hang around here the longest time.

Houston and 6 month anniversary

It was a fun filled weekend and very busy.  We left for Columbus late Friday evening and stayed with Carla and Jamie at their house and we got to catch up some.  Carla used to work with Michelle and our families have become good friends.  We had to fly out of Columbus because believe it or not, there were a few people flying out of Kentucky to go to the game.  I'm glad the excuse was given for us to go to Columbus because we got to spend some time with the two that made this weekend possible for us.  We flew out of Columbus Saturday morning and got to Houston around 2.  Thankfully all of the planes we flew on with Southwest didn't have part of the roof blow out on us and thankfully none of our flights were cancelled.  We rested at the hotel before the games, Michelle by poolside.  We got down to the arena and of course there were lots of blue at the game.  Big Blue Nation was in full force.  The stadium was very cavernous and in my opinion, there weren't very many good seats; basketball in huge dome like stadiums aren't made for basketball.  Our seats were very good and were in the 2nd level on the sideline side.  It was really surreal and cool being at the Final Four.  It was neat to see the other teams fans.  The attendance was 75,000 and was a record for the tournament.  And then there was the game.  I don't know about you but I didn't have a very good feeling about winning, couldn't seem to hit shots.  I was glad to see it go down to the wire and there were some intense moments near the end.  It just wasn't meant to be, UConn has been on one one heck of an impressive run.  After the game was a lot of fun as we waited in the taxi cab line for one hour forty-five minutes of pure heck.  We got back to the hotel room at 1:30am and set the alarm for 4:45am to make our 6:20 flight.  We made it back to Columbus and got to have lunch with Carla and Jamie again.  To say the least, thank you again Carla and Jamie!  We drove back and got to hit up the outlet mall on the way back in Jeffersonville, OH; my favorite part :)  The coolest thing about the weekend was getting to hang out with my wife away from all the distractions.  It seemed like reconnecting in the sense we don't get to do that very often, at all.  It was a weekend I'll always remember.  I did get to meet CL Brown at the game who wrote our article in the CJ, he came up to see us at our seats.  We were happy we did the article and pretty happy with how it turned out. We wondered if they'd put God in the article since we talked about it's Him that gets us through this mess and he included that.  The only weird part was the article obviously served as a reminder about how unnormal we are these days.
My 6 month anniversary was yesterday.  This anniversary marks my probability of possibly not being here.  Stats say 50% with the diagnosis don't make it past 6 months.  That's a lot "brothers and sisters" that have now gone on.  Now I've got to get to one year and be in the 25% that make it one year.  I'm feeling a lot better these days and I don't see why I can't make a good run at this.  The scary part for me is I remember 6 months ago saying to myself, "6 months is a ways away."  6 months just came and went.
Tomorrow morning (Wednesday) is my 3rd opinion appt with Dr Sharma at the James Graham Brown Center at UofL.  Next Monday morning is 4th opinion appt at Vanderbilt in Nashville.  The Vandy trip will also let us know what the status is on my qualifications for getting on a clinical trial.  They are very cutting edge and do lots of trials so we'll either find one or we'll be plugged into their system so when something promising comes along, we'll be ready to jump in.
I thank God for the day and hope you thank him as well.

CJ article

http://www.courier-journal.com/apps/pbcs.dll/article?AID=2011304010109

I am sure everyone has read it but here it is if you didn't see it on Saturday.
More to come on the weekend in Houston.
We had a great time!

busy Friday

Hannah is trying to help me with this post so this is going to be a quick one.
The Courier Journal is writing an article on two UK alumni going to the game this weekend. A couple that has faced adversity over the past half year. They met and fell in love at UK. They got married and had three future little wildcats.
Can you guess who the article will be about?

US!
Look in the final four section of tomorrow's paper!

So that is the good news. (Hannah is wrangled into the excersaucer)

here how today has gone:
3:00 wake baby, feed baby, 3:30 back to bed, 8:00 all babies awake and hungry, laundry, change sheets for mom and Brad who are watching the girls, Nuelasta shot for Craig, Morgan went with, laundry, pack a bit, Hannah nap, Emily and Morgan off to art therapy, talk with art therapist: should I be doing more? no, they are really doing fine, you are not going to screw them up b/c you love them and they know that. are you sure? yes. sigh of relief. drive home. on the way CJ called to set up pictures for the article, late lunch, interview with CJ over the phone, pack a bit, brush hair for pictures, pictures taken, feed Hannah, watch movie, CJ called for Craig's interview....
I am so tired.
What's left: packing, finish up laundry, feed little people, load car, bathes, put 2 out of 3 kids to bed, drive to Columbus. SLEEP.

Then off to HOUSTON!!!
YAY!
GO CATS!!!