Tuesday, March 22, 2011
2nd Opinion Info
Today we had an appointment with Dr Harandi from Kentuckiana Cancer Institute, part of Jewish. He spent a full hour and a little more with us today and was full of information and allowed the questions to keep coming. We were very comfortable with him as he was very personable and acted like he very much cared. I have so much information to share I'll do my best to share it all. I imagine a part 2 will be needed once I go to bed and think of other things to share. The truth is I do have a hand full of options and he even admitted that you can meet with 5 different oncologists and get a different recommendation. I imagine he is in his upper 30's and we know he has a 4 year old and a one year old at home so I think he gets us. He layed out the options and we eventually got down to the what would you do in my shoes. He said he'd finish out these last 2 treatments that are left assuming I could handle them and then do a couple of things. He recommended going down to Nashville and visit Vanderbilt and another center that are both advanced cancer centers and have access to some of the stuff that Louisville doesn't have. He also recommended U of Chicago because all of these centers are in driving distance. He actually wouldn't go to the centers we previously mentioned (MD Anderson and John Hopkins) because there recommendation would probably be the same or similar to what has already been laid out or if they do have something special, it's going to be a trial and I'll most likely be looking at doing treatments there which would be difficult. Yes, the clinical trials would be good but its best to find a top notch place that is within driving distance and manageable. Different cancers have different options but there is nothing earth shattering right for now for PC that is out there and worth moving your family or travelling extensively. We probably won't actually find a clinical trial available to us right now because to qualify, I'd probably have to be getting worse. Worst comes to worst, we could line something up in Nashville thats sitting there waiting in case things do "progress" or get worse. If by chance, they do have one I'd qualify for now, he'd jump on it if had good results. So that sends us back here probably and he'd recommend we switch the chemotherapy to gemzar and maybe tarceva which is a standard treatment. He did not recommend waiting to see what happens and the point he sold me on was it would kind of be silly to stop doing treatments if I can tolerate it and they are working. This line of chemo would actually be more often, once a week but it is very tolerable. As he put it, little old ladies take this stuff and they are fine. He said people work and do this treatment and that there's actually only about a 25% chance you'll become nauseous without any nauseau medicine. It's evidently night and day compared to the harsh treatment I am currently on which you have to take nauseau medicine and it knocks you out for days. He feels that if I'm responding well to this current treatment, I will respond to another. He said I'll be able to gain some weight and strength back while doing this treatment which was a concern. This treatment I could do an unlimited amount of so I'd be doing it indefinitely. I asked if I'm looking at chemo for the rest of my life and he said yeah probably, as long as it works in some fashion. By switching to this new regimen, I could keep what I'm doing now in my back pocket and go back to it briefly in the future if things start to get worse. One option was just to remove one of the drugs I'm doing now since it's working and he said the only problem was I wouldn't really have anywhere to turn if things got worse because I couldn't add that other drug back in because my body wouldn't be able to take it. Radiation is not really an option because I have spots in different areas and you have to localize that treatment to one spot in your body; can't shoot the liver and pancreas at same time (without serious repurcussions to the GI system). Surgery is not an option and would be malpractice as he said because removing the tumor in the pancreas would be ignoring the liver and it would just came back; also the surgery is very difficult to recover from and often causes more complications. If I switch to this doctor, I can get treated at the new Jewish Hospital facility closer to home. Overall it was a good visit and we are strongly considering switching doctors. We feel we talked to him more today then we have all the other times with our current doctor. We want a personal investment from our doctor that we can trust and truly cares. Most sobering news is we asked him about any successes with PC patients. His best patients that have responded to treatments have gone on to live for "2+" years. That brought us quickly back to reality and not what you want to here but unfortunately it's the grim reality. I asked if I was the youngest to be treated there for PC and it sounds like I'd be second to a high 20 something year old that's no longer with us. Hopefully I didn't leave out the most important questions for you, if I missed something big, I'll add later.
Monday, March 21, 2011
So how about the weather
I've been looking forward to warm weather for a long time and we're finally getting some. I'm preparing for my day and plan on getting out. Lunch with a friend, a haircut, some shopping for shorts that fit, maybe a little driving on the back roads in Oldham County. The cold weather maked me miserable and now I'm so much happier. I think I'm going to be crazy and wear sandals today. Not too much to report other than things are in a forward positive place right now. I'm probably feeling better than I have ever with my supposed 6 month expiration coming up at the beginning of April. I've got my first 2nd opinion appointment scheduled tomorrow so we'll see what Dr. Hirandi here in Louisville would suggest. He's actually a younger doctor but sometimes it's good to hear from younger eager doctors that are passionate on what they are doing and probably not as much worn down dealing with this crap. I still plan to meet with another doctor here in town at the James Graham Brown facility. I'm still very much interested in travelling to one of the large cancer centers to get an opinion there. I only have 2 treatments of this protocol left over, one at the end of the March and one last one on April 12, a day before my Michelle and mine's 9th anniversary. It feels like such an accomplishment to get through this stage and I can see some light (no not that Light). However, this treatment is working and I may stay on some form of it. The treatment I'm on is really limited to about 12 treatments because of it's toxicivity. One of the drugs in my cocktail really burns your insides and leaves you with the side effect of having tingling feelings in your feet and in your fingers, its evidently a thorough drug. I have these side effects now but I can get past them. I'd run the risk of losing majority of feeling in those areas and I'd evidently be tripping over my own feet constantly. There's also the issue of my white blood cell counts keep going down with each treatment so I can't keep doing that. One of the options we'll look into is removing that highly toxic drug (oxaliplatin) and just use the other drugs. The plan on the table from doctor right now is to stop treatments and wait and see what happens with often tests. This sounds appealing but we're afraid it will scare the heck out of us not doing anything. We need to get the tumor and liver spots gone and they are on the way down and hopefully out but we are running out of time with this treatment. I get the feeling things will continue to decrease over the next month but they won't be completely gone leaving me with some things hanging around waiting for a rainy day. It would be a miracle if it's gone after these next few treatments. Having the tumor and spots gone is our goal and that will be a good day if that happens. That definitely buys us time hopefully in years. The one warning is that I'll never be considered cured and will always be at high risk for it coming back. We'll continue to pray for some real guidance down here on earth and continue to pray for my miracle.
Tear Jerker of the Week (at least for me):
Emily is not afraid and actually likes to be with me when I see a doctor or a nurse (she's never been to a chemo treatment). She was home last Thursday when my Homehealth nurse came out to our house to disconnect my chemo drip. She was doing fine but when the nurse was done and left, Emily had some tears in her eyes. Michelle and I comforted her and asked her to talk what was on her mind but she wouldn't talk; she was fine a few minutes later. The next day, I took Emily with me to the doctor to get my shot for my white blood cells and I asked her again why she was crying yesterday and she just said with a sad cute face, "I just want the rock (my tumor) to be gone." "Me too Em." There's so much they don't know but I think they know more than we think.
Tear Jerker of the Week (at least for me):
Emily is not afraid and actually likes to be with me when I see a doctor or a nurse (she's never been to a chemo treatment). She was home last Thursday when my Homehealth nurse came out to our house to disconnect my chemo drip. She was doing fine but when the nurse was done and left, Emily had some tears in her eyes. Michelle and I comforted her and asked her to talk what was on her mind but she wouldn't talk; she was fine a few minutes later. The next day, I took Emily with me to the doctor to get my shot for my white blood cells and I asked her again why she was crying yesterday and she just said with a sad cute face, "I just want the rock (my tumor) to be gone." "Me too Em." There's so much they don't know but I think they know more than we think.
Wednesday, March 16, 2011
Wednesday update
Just OK around here.
He is not in the mood to eat. Little more nausea than in the past treatments. tired. tired. tired.
one day at a time.
He is not in the mood to eat. Little more nausea than in the past treatments. tired. tired. tired.
one day at a time.
Monday, March 14, 2011
Morgan is 4!
Morgan turned 4 on February 22nd. This post is long over due. Honestly we lost the camera for a while. But here is goes.
Morgan has been in a hurry even before day one. I was on bed rest with her for 5 weeks b/c she thought she needed to be the speed demon we now know. In the middle of the night on the 22nd she was coming fast and furious until she was stopped by a repeat C-section at 4:57am. She was a LOUD and colic baby until about 7 weeks and by 6 months we finally saw her true personality start to come out. She was a fun toddler.
She is bouncy, energetic lovable little lady. She loves over-the-top accessories and has a HUGE heart. She worries about people and thinks through things. Emily might come out of nursery singing all the songs she learned in chapel while Morgan simply says we talked about Jesus. But weeks sometimes months later she can apply what she learned from whatever story was discussed. She is a cuddle-bug and loves being a big sister. She is strong-willed and passionate. She is hard working and fun loving.
Her favorite thing to do is to BOUNCE! We had her birthday party at Puzzles Fun Dome.
Morgan Elizabeth
2/22/07 4:57am
7lbs 2oz.
She is bouncy, energetic lovable little lady. She loves over-the-top accessories and has a HUGE heart. She worries about people and thinks through things. Emily might come out of nursery singing all the songs she learned in chapel while Morgan simply says we talked about Jesus. But weeks sometimes months later she can apply what she learned from whatever story was discussed. She is a cuddle-bug and loves being a big sister. She is strong-willed and passionate. She is hard working and fun loving.
Her favorite thing to do is to BOUNCE! We had her birthday party at Puzzles Fun Dome.
Happy (belated) Birthday Morgan!
Little update
This is just a quick update. We have contacted two local oncologist for second opinions. We are praying that those will go well and they will be on the same page as us for the most aggressive plan to attack this cancer. If we need to travel we will but for now we are looking at docs in town.
Craig has treatment tomorrow. There are three left including this one. We would love to be able to take Dr. Hamm's advice on wait and see if the last CT scan after the last treatment was clear. So please pray that these last three treatment do what it takes to get that clear CT scan that we have been praying for. If not we will continue onward in some form or fashion.
As for the feelings in the house it is an emotional roller coaster. We did have a great weekend. Nothing out of the ordinarily just a fun weekend, watching basketball, church and playing outside. We were sitting on the couch watching UK and Emily asked why I was crying before. I told her that I was sad b/c Daddy's pancreas was so ugly. Morgan chimes in "you ugly daddy" no no just the pancreas. giggles. I said I was sad that he has to take chemo and Emily said b/c it makes him so tired? yes. Morgan chimes "pancreas hahaha". Then Emily says let's just not talk about the pancreas any more. I think she is tired of the stress. Too many good things to talk about rather than an ugly pancreas. And that was that. Morgan didn't take her blanket to school today and that is a good sign that her anxiety is at a low level so that is good.
Thanks for all the prayers. Keep them coming. ;)
Craig has treatment tomorrow. There are three left including this one. We would love to be able to take Dr. Hamm's advice on wait and see if the last CT scan after the last treatment was clear. So please pray that these last three treatment do what it takes to get that clear CT scan that we have been praying for. If not we will continue onward in some form or fashion.
As for the feelings in the house it is an emotional roller coaster. We did have a great weekend. Nothing out of the ordinarily just a fun weekend, watching basketball, church and playing outside. We were sitting on the couch watching UK and Emily asked why I was crying before. I told her that I was sad b/c Daddy's pancreas was so ugly. Morgan chimes in "you ugly daddy" no no just the pancreas. giggles. I said I was sad that he has to take chemo and Emily said b/c it makes him so tired? yes. Morgan chimes "pancreas hahaha". Then Emily says let's just not talk about the pancreas any more. I think she is tired of the stress. Too many good things to talk about rather than an ugly pancreas. And that was that. Morgan didn't take her blanket to school today and that is a good sign that her anxiety is at a low level so that is good.
Thanks for all the prayers. Keep them coming. ;)
Wednesday, March 9, 2011
Hey
I don't have much to report but I understand I like to be heard from every once in a while. I'm having a good week health wise. Mental wise can sometimes be a challenge but my body is feeling good. I wore a short sleeve sort for the first time in a while the other day and damn I'm skinny. I can't wait for things to warm up, hope I don't look to much like a freak when it's shorts weather. I'm actually, for the most part, comfortable with my weight. I look like a Kenyan runner so I look skinny but somewhat in shape. This week hasn't been too eventful. We registered Emily for kindergarten this morning which is a big step for the family. She is excited to be a "big" kid and she loves learning. She looks forward to that a lot and she's a pretty bright girl. She'll be going to Kenwood Station in Crestwood. I'll say the Oldham County thing was a pretty good idea. They let you go to the school closest to you, which is nice.
On another note, I've been researching from the national Pancreatic Network on what I can do to bring awareness to PC and it's horrible statistics. Louisville doesn't have a local organization for PC but most major cities do. I found walks all over the country and I'm going to work towards doing one. I think I'm aiming to do a 3k walk/run in Indianapolis in June. That's one of the closer walks to Louisville. It's a shame we don't have anything here. There's a lot of info to share about PC. I've become passionate regarding the lack of research for this cancer and how it's put on the back burner. The biggest accomplishment made in this field is the 5 year survival rate from those diagnosed has gone from 3% to 6% over the the last 40 years. That's a joke when considering all the strides made in the medical field. Anyhow more to come. I'll be doing a little fundraising with that when I finalize some plans. I did want to make my St. Edward friends or anyone familiar with the Huston family aware that Scott Huston is running in the Pittsburgh marathon coming up this summer and wants to bring awareness to PC. He asked me to post a link to his fundraising effort and I have to oblige for anyone willing to run 26.2 miles for this cause.
On another note, I've been researching from the national Pancreatic Network on what I can do to bring awareness to PC and it's horrible statistics. Louisville doesn't have a local organization for PC but most major cities do. I found walks all over the country and I'm going to work towards doing one. I think I'm aiming to do a 3k walk/run in Indianapolis in June. That's one of the closer walks to Louisville. It's a shame we don't have anything here. There's a lot of info to share about PC. I've become passionate regarding the lack of research for this cancer and how it's put on the back burner. The biggest accomplishment made in this field is the 5 year survival rate from those diagnosed has gone from 3% to 6% over the the last 40 years. That's a joke when considering all the strides made in the medical field. Anyhow more to come. I'll be doing a little fundraising with that when I finalize some plans. I did want to make my St. Edward friends or anyone familiar with the Huston family aware that Scott Huston is running in the Pittsburgh marathon coming up this summer and wants to bring awareness to PC. He asked me to post a link to his fundraising effort and I have to oblige for anyone willing to run 26.2 miles for this cause.
Thanks Scott for doing that and hopefully you can drag Todd out on the course with you.
Other than the above, we are making plans to get multiple opinions from different cancer institutes on what to do when I'm done with this treatment. That will be another post but some pretty big decisions are going to be made over the next 2 months. If you are looking what to pray for, pray we get to the right doctors and we get the best information out there. God has kept my calmness within me and I thank Him for that.
Monday, March 7, 2011
From the caregivers eyes
Couple weeks back I was very annoyed when others asked how Craig was doing. It seemed people only wanted the good news. People only wanted to know what his tumor marker and scans were saying. It is wonderful that so many people are rooting us on and I thank you all for the prayers but this particular day the more people asked the more I was getting ticked off. "Craig is doing great, he is bouncing back, his tumor marker decreased again the last check and we have a scan on blah date" That was my story and I was sticking to it. But that was only a fragment of what was really going on. I wanted to say, ask how I am doing, I dare ya. I am freaking nuts! There is more to this then a tumor marker. There is a laundry list of things to be concerned about. How long will this progress in this direction? If it goes the other direction will it take a long time to get to the end of the rope? What will I do without him? What will I do with him in this condition? Will I marriage again? date?ugh Will I be able to handle all three girls on my own? Or will he be on chemo for the rest of his life? Will I always be searching for answers? For years? Will I be making travel plans? Will we ever live a normal life again? Where will the girls stay if we do have to travel? If I find someone to take the risk and do the Whipple procedure who would take my girls for two weeks while he is in recovery? Will he recover? Will the girls be okay with us traveling without them? Will I have to travel more than once without them? How will we get homework done if we have to be out of town? Will I miss sporting events for them in the future if I am constantly chasing a chemo treatment? Will I miss dance and gymnastic meets? Will we even have the money for extra activities if we are running around he country looking for a suitable treatment plan? Will I know how pay the bills if I have to learn how do to this on my own? Will I still work? Will I work from my house? Will I be able to work and raise three girls on my own? Will I even have the choose not to work? Do I want the chose? All these questions are very self-centered, what about Craig? Doesn't he deserve more? Am I doing enough to make this better? Do I call a therapist for Morgan? Will Hannah be effected b/c I cry when I rock her to sleep? Will she wear black clothes and get a tongue ring when she is a teenager b/c her mom cried when rocking her to bed? Will family members give me grief is they don't agree to the medical decisions we make? Will I ever get to worry about just normal things again? Will we get to go on vacation this summer? Will Craig feel good enough to go to Holiday World this summer? Will ever get to look beyond a couple weeks? days? hours? Should I call a therapist for him? Should I be doing more for him? Should I just not fight with him at all any more? Shouldn't we be doing something different? Will we buy a new house with 4 bedrooms or just stay here? Do I wait and move if something happens to Craig so that I don't have to live in the same house with all the memories of cancer? Will I want to? there is much more to this list but you get the gist.
I was struggling. I wanted to scream, there is more to this than a tumor marker!!! Then I realized why I was so anxious besides not knowing what lies ahead, my security was being stripped away. Everyone strives for security. (some won't admit it but it is what everyone is looking for). We set ourselves up with nice little college degrees so we can get a nice little job. We look for that special someone, get a cat/dog, have some kids, put a white picket fence out front, and put an SUV/car/minivan in the attached garage and call it a day. I was letting this cancer shake what my security has always been in: the "perfect" life. We all strive to create but when push comes to shove it means nothing. My security can no longer lie in my "white picket fence" life but it has to lie in the thing that it should have been in all along: GOD. B/c when push comes to shove all the things that I have built my life to contain could be gone in an instant or could detearate over time b/c of a lose of a loved one but the one person that remains regardless is GOD.
I feel secure knowing that He will always be there even if all those questions have rotten answers.
Here is what I am struggling with now: How can my security lie with someone that could have prevented this from happening to my house? I know that the better question is who do you turn to in times of trouble not why we have times of trouble, but this is tough question. Here where I am so far with it, security is not preventing something harmful but knowing that someone will be there when it does. Security is not knowing that you will have a comfortable life but know that your life will be fulfilled with relationships that will get your though when life isn't so comfortable. I have security in God knowing that He is there and He sacfried His only Son so that my eternity would be very comfortable. To be honest most days that is enough but somedays it doesn't feel like enough. I yearn for my simply white picket fence life back. Somedays I wonder why He didn't prevent this from happening at all. Why couldn't have been something else. I don't know the answers to that but when push comes to shove His love is more than enough.
I was struggling. I wanted to scream, there is more to this than a tumor marker!!! Then I realized why I was so anxious besides not knowing what lies ahead, my security was being stripped away. Everyone strives for security. (some won't admit it but it is what everyone is looking for). We set ourselves up with nice little college degrees so we can get a nice little job. We look for that special someone, get a cat/dog, have some kids, put a white picket fence out front, and put an SUV/car/minivan in the attached garage and call it a day. I was letting this cancer shake what my security has always been in: the "perfect" life. We all strive to create but when push comes to shove it means nothing. My security can no longer lie in my "white picket fence" life but it has to lie in the thing that it should have been in all along: GOD. B/c when push comes to shove all the things that I have built my life to contain could be gone in an instant or could detearate over time b/c of a lose of a loved one but the one person that remains regardless is GOD.
I feel secure knowing that He will always be there even if all those questions have rotten answers.
Here is what I am struggling with now: How can my security lie with someone that could have prevented this from happening to my house? I know that the better question is who do you turn to in times of trouble not why we have times of trouble, but this is tough question. Here where I am so far with it, security is not preventing something harmful but knowing that someone will be there when it does. Security is not knowing that you will have a comfortable life but know that your life will be fulfilled with relationships that will get your though when life isn't so comfortable. I have security in God knowing that He is there and He sacfried His only Son so that my eternity would be very comfortable. To be honest most days that is enough but somedays it doesn't feel like enough. I yearn for my simply white picket fence life back. Somedays I wonder why He didn't prevent this from happening at all. Why couldn't have been something else. I don't know the answers to that but when push comes to shove His love is more than enough.
Sunday, March 6, 2011
Prayers for Wisdom
Proverbs 11:2:
Pride leads to disgrace
but with humility comes wisdom.
I have began to look through clinical trial and email doctor friends for advice on next steps. I have come up with a much needed prayer for our next step. We need an oncologist that takes interest in healing Craig and not stopping until he/she does. We need an aggressive go-get-em doctor that understands that my three kids deserve to have their dad for many more years to come. We need prayers on where to turn for that. My college degree is not in medical research or oncology. I am not trained to make medical decision or even lay out the best options. In the world of cancer you have to be your advocate and practically know more than the doctors so that who know the right questions to ask. That is fine, incredibly hard especially when you had no intention of knowing what the pancreas did before October, but fine. But we need someone that is on our side. We need a second opinion that isn't looking to make Craig's life more comfortable. We need someone that will look at things from a 30 year old perspective and if it means taking some risk then so be it. If it means thinking outside the box then so be it. But I am out of energy asking doctors to treat my husband like he has three young kids not like a 85 year old retiree.
So please pray for wisdom on where that special person is that wants to be a part of this miracle healing.
Thanks for everything, especially the prayers.
Pride leads to disgrace
but with humility comes wisdom.
I have began to look through clinical trial and email doctor friends for advice on next steps. I have come up with a much needed prayer for our next step. We need an oncologist that takes interest in healing Craig and not stopping until he/she does. We need an aggressive go-get-em doctor that understands that my three kids deserve to have their dad for many more years to come. We need prayers on where to turn for that. My college degree is not in medical research or oncology. I am not trained to make medical decision or even lay out the best options. In the world of cancer you have to be your advocate and practically know more than the doctors so that who know the right questions to ask. That is fine, incredibly hard especially when you had no intention of knowing what the pancreas did before October, but fine. But we need someone that is on our side. We need a second opinion that isn't looking to make Craig's life more comfortable. We need someone that will look at things from a 30 year old perspective and if it means taking some risk then so be it. If it means thinking outside the box then so be it. But I am out of energy asking doctors to treat my husband like he has three young kids not like a 85 year old retiree.
So please pray for wisdom on where that special person is that wants to be a part of this miracle healing.
Thanks for everything, especially the prayers.
Thursday, March 3, 2011
Thankful Thursday
Quick update before we get to Thankful Thursday. Craig is doing just okay this go around. Much more tired than the past three treatments. He did get sick Tuesday night. I hope it turns around and he can bounce back for the weekend but I would guess church on Sunday is about as far as he is going to go this weekend. Hope that I am wrong. He is irritated that he hasn't bounced back like he did before but every treatment is different. Prayers that he turns the corner tomorrow and we are not back to the routine of 10 days down and 4 days of okay before the next treatment comes around.
Today I was starting to do some research on what we could do next. What does MD Anderson have to offer? What is John Hopkins up to these days? Is there someone local that we can get a second opinion from? I was completely overwhelmed with where to turn and how to make a decision with all the cancer center options in the US. How could one know where to point the plane? It is all so confusing to read through and understand what is the next best steps.
I went in to get my hair cut this afternoon and my favorite stylist, Sean, told me about his girlfriend's nephew. His name is Alexander, he was diagnosed with cancer at 10 months old and lives in Romania. Their health care system consist of the theory you get what you get and you don't get upset. The doctor that is treating Alexander is not a pediatric oncologist. They can't go somewhere else for a second opinion or to other doctor with a better treatment plan. Say a prayer for sweet Alexander and thank God that you live in a privileged country with many health care options.
There may not be a cure for this cancer and the funds may not be equally distributed but there are centers around our country that are working on it and we have the privilege to get on a plane any given week and sit down with a doctor that specializes in just cancer and may just have what we need.
That is something to be thankful for on this Thursday.
Today I was starting to do some research on what we could do next. What does MD Anderson have to offer? What is John Hopkins up to these days? Is there someone local that we can get a second opinion from? I was completely overwhelmed with where to turn and how to make a decision with all the cancer center options in the US. How could one know where to point the plane? It is all so confusing to read through and understand what is the next best steps.
I went in to get my hair cut this afternoon and my favorite stylist, Sean, told me about his girlfriend's nephew. His name is Alexander, he was diagnosed with cancer at 10 months old and lives in Romania. Their health care system consist of the theory you get what you get and you don't get upset. The doctor that is treating Alexander is not a pediatric oncologist. They can't go somewhere else for a second opinion or to other doctor with a better treatment plan. Say a prayer for sweet Alexander and thank God that you live in a privileged country with many health care options.
There may not be a cure for this cancer and the funds may not be equally distributed but there are centers around our country that are working on it and we have the privilege to get on a plane any given week and sit down with a doctor that specializes in just cancer and may just have what we need.
That is something to be thankful for on this Thursday.
Tuesday, March 1, 2011
Results from the CT scan and AWESOME Tumor marker!!!!!
We touched base with Dr. Hamm and really the only thing that I can report is we are going in the right direction based on the scan results. They left off some details of the report and I have asked them to take another look at the scan. The last report gave the measurements of the pancreatic tumor and this one left those off. The lesions in the liver shrank and there aren't any more so that is good news. Clearly a different person wrote this report than the last author. So there is more to come with this post but for now all I have is we are moving in the right direction.
Tumor marker: 31.8!!!!!!! (from 71 two weeks ago)
platelets: still low, the 25% reduction in chemo will resume.
everything else: okay
What's next after these last 4 treatment? That is still unknown too. Dr. Hamm opinion is a wait and see approach and I am not comfortable with that take on the situation. Next steps? travel? where? another opinion in the city of Louisville? maybe? We will leave those questions to God and after much prayer we will let you know.
I will be back with more...
more - The tumor in the pancreas decreased in size slightly. So we are on the right track to finish out this treatment with 3 more and then pray for God's next steps for healing and His good grace.
Thank God for good numbers, decreases and great recovery the past couple treatments.
Tumor marker: 31.8!!!!!!! (from 71 two weeks ago)
platelets: still low, the 25% reduction in chemo will resume.
everything else: okay
What's next after these last 4 treatment? That is still unknown too. Dr. Hamm opinion is a wait and see approach and I am not comfortable with that take on the situation. Next steps? travel? where? another opinion in the city of Louisville? maybe? We will leave those questions to God and after much prayer we will let you know.
I will be back with more...
more - The tumor in the pancreas decreased in size slightly. So we are on the right track to finish out this treatment with 3 more and then pray for God's next steps for healing and His good grace.
Thank God for good numbers, decreases and great recovery the past couple treatments.
Monday, February 28, 2011
back from the CT scan
We won't have results until tomorrow when we visit with Dr. Hamm before the treatment. I was very anxious last time b/c it was the first scan since treatment started but I am not extremely anxious today for some reason. I assume that we are moving in the right direction since Craig is feeling so much better than before and continues to feel good. He hasn't felt the pain in his side for a long while now so we are assuming that the tumor has shrunk. We will know tomorrow for sure.
I will post pictures of Morgan's birthday party soon. It was hard to get some good shots since everyone was bouncing in the bounce-houses and my camera has that focus delay. Great camera, but not good for an active 4 year old. More to come.
I will post pictures of Morgan's birthday party soon. It was hard to get some good shots since everyone was bouncing in the bounce-houses and my camera has that focus delay. Great camera, but not good for an active 4 year old. More to come.
Tuesday, February 22, 2011
Ursula
You know that scene in the movie The Little Mermaid where Ursula the sea witch is trying to capture Ariel's voice in the sea shell? She keeps screaming "Keep Singing! Keep singing!" Ariel sings her little heart out until her voice is gone and her fins turn into feet. Do you know what I am talking about?
Anyway, I feel like Ursula when I tell people to keep praying. Good thing I don't look like her, seriously sea witch cut back on the french fries. But things seem to be going well for Craig so keep praying, it is working. The CT scan is Monday and we need the spots in the liver to be gone and another decrease in the pancreatic tumor size. Well and I have to throw it out there b/c I am an overachiever but wouldn't it be great if it was all gone!!!Unexplainable gone? SO "keep praying!!!! keep praying!!!"
Things are okay. I am .... hmmm I really can't think of an emotion to fill in that blank. tired? no, you can sleep tired off. ticked off? no. in a funk? no you can shake that with some exercise. blah? no, that is kind of like funk you can shake that. I guess I am numb, exhausted, scared, and just kind of here. I did go to see a therapist. Which I am telling you on the blog b/c #1 there is nothing to be ashamed of, #2 b/c it is far less embarrassing to go to see a therapist that to lose your mind in aisle 3 of a Kroger store. (clean up in aisle 3, Michelle is throwing another temper tantrum and her kids are looking at her funny). Anyway. She was very insightful. She is through the counseling center at SECC. We went through a couple bible stories where people were in situations where the weight of the world was on their shoulders and they were in despair. God heard their cry and sent them help. It was a different outlook then a typical "God will give you strength in tough times" outlook. It wasn't let God and the bible help you plow through a tough situation the message was feel your pain and take my tears to God. It was interesting. A little taxing to let myself go down that road of actually digesting the mess that we have in this house. It is one thing to live through a messy situation and another to learn and let the situation make you a better person. This is life-changing. Whether we wanted our life changed or not it is what it is. We wouldn't have a better relationship with God in the end of all this suffering if we just asked to get us through. We have to grow with the situation. I am not really sure what that means. Honestly it has taken me a full 40 hours to get that much into words. This is quite a challenge. I have never been in a situation you couldn't talk your way through until you found a solution. I know talking it out will help me work through the emotions that go along with it but there is really not a solution to this. I am a very problem/solution kind of gal so this is a new way of dealing with something. I don't like it but if this the plan that He has set before us then ... His will be done.... we are trusting that He will be there but wow those are hard words to mean. You can say them all you want but to really mean them... His will be done... that could be messy. It might mean tears, it might mean setting aside time for messiness, it might mean a personal day here and there to sit and be still. It might mean things are not so black and white. yuck. messy. Someone give me a spreadsheet quick! add up numbers... ahhh that makes sense... this mess ....not so much. There is not an excel worksheet on cancer. I don't like that either.
Okay, I am logging off here b/c I am pretty sure this post doesn't make any sense. Hope He knows what I mean. He does, more than I know what I mean.
Oh and prayers for the Clark-Davis family. Little boy Davis is coming into this world tomorrow morning via C-section. Very excited for his entrance. prayers for mom (Sara) and baby brother (name - TBD). ;)
Anyway, I feel like Ursula when I tell people to keep praying. Good thing I don't look like her, seriously sea witch cut back on the french fries. But things seem to be going well for Craig so keep praying, it is working. The CT scan is Monday and we need the spots in the liver to be gone and another decrease in the pancreatic tumor size. Well and I have to throw it out there b/c I am an overachiever but wouldn't it be great if it was all gone!!!Unexplainable gone? SO "keep praying!!!! keep praying!!!"
Things are okay. I am .... hmmm I really can't think of an emotion to fill in that blank. tired? no, you can sleep tired off. ticked off? no. in a funk? no you can shake that with some exercise. blah? no, that is kind of like funk you can shake that. I guess I am numb, exhausted, scared, and just kind of here. I did go to see a therapist. Which I am telling you on the blog b/c #1 there is nothing to be ashamed of, #2 b/c it is far less embarrassing to go to see a therapist that to lose your mind in aisle 3 of a Kroger store. (clean up in aisle 3, Michelle is throwing another temper tantrum and her kids are looking at her funny). Anyway. She was very insightful. She is through the counseling center at SECC. We went through a couple bible stories where people were in situations where the weight of the world was on their shoulders and they were in despair. God heard their cry and sent them help. It was a different outlook then a typical "God will give you strength in tough times" outlook. It wasn't let God and the bible help you plow through a tough situation the message was feel your pain and take my tears to God. It was interesting. A little taxing to let myself go down that road of actually digesting the mess that we have in this house. It is one thing to live through a messy situation and another to learn and let the situation make you a better person. This is life-changing. Whether we wanted our life changed or not it is what it is. We wouldn't have a better relationship with God in the end of all this suffering if we just asked to get us through. We have to grow with the situation. I am not really sure what that means. Honestly it has taken me a full 40 hours to get that much into words. This is quite a challenge. I have never been in a situation you couldn't talk your way through until you found a solution. I know talking it out will help me work through the emotions that go along with it but there is really not a solution to this. I am a very problem/solution kind of gal so this is a new way of dealing with something. I don't like it but if this the plan that He has set before us then ... His will be done.... we are trusting that He will be there but wow those are hard words to mean. You can say them all you want but to really mean them... His will be done... that could be messy. It might mean tears, it might mean setting aside time for messiness, it might mean a personal day here and there to sit and be still. It might mean things are not so black and white. yuck. messy. Someone give me a spreadsheet quick! add up numbers... ahhh that makes sense... this mess ....not so much. There is not an excel worksheet on cancer. I don't like that either.
Okay, I am logging off here b/c I am pretty sure this post doesn't make any sense. Hope He knows what I mean. He does, more than I know what I mean.
Oh and prayers for the Clark-Davis family. Little boy Davis is coming into this world tomorrow morning via C-section. Very excited for his entrance. prayers for mom (Sara) and baby brother (name - TBD). ;)
Sunday, February 20, 2011
My Dad
It's been about 3 1/2 years since my dad passed away but I think of him a lot and I feel he deserves a post. My relationship was extremely close to him. He passed when he was 58 and about the last 10 years of his life were spent trying to recover from a stroke that he never fully recovered from. He got worn down by life and became fraile and very skinny. He had an unhealthy heart that lasted way longer than probably anyone thought. He was actually born with a hole in his heart. When he was in high school, he had open heart surgery and was told he'd probably not live past 20 years of age. I bring all this up about my dad for a couple of reasons. One is the one that gives me hope, that he made it to 58 when he wasn't supposed to go past 20. Totally different problems but none of us no when our expiration date is actually going to be and that gives me hope. Another reason I bring this up about my dad is every time I look in the mirror, I see him. I look a lot like him and unfortunately I'm pretty fraile just like he became. I loved my dad as much as anyone in the world and its good that I think of him all the time. However, he'd be crushed to see the resemblance we have in each other right now. I'm crushed about the resemblance in the sense it just means I'm a little beat up. I know one day we'll get to reunite and that can seem exciting but he's thinking the same thing I am right now. Hold onto dear life and fight for my family. I talked to him tonight while I was doing one of the most peaceful things in the world which is rocking a little baby girl while she fell asleep in my arms. I told him I look forward to seeing him but I've got more important things to do right now. Anyhow, this post is a little overdue for me but it's an important one to me.
On the homefront, we are doing well. I recovered probably quicker than I ever have. Last Friday I got to spend much of the day outside and played with the girls that majority of the afternoon. It was warm enough for me to be outside which was a true blessing. The sun was out half of the day and that was a true blessing. Most importantly, I truly cherished watching the girls play with big smiles on their faces. I got to push the girls on the swings and I lasted about 15 minutes which is actually a pretty good workout when you've got two of them going. I still had to take my 2 hour rest but the rest of the day seemed like an eternity. This weekend is Morgan's first birthday weekend. Her 4th birthday is Tuesday so we celebrated some this weekend and we'll celebrate some more next weekend. She got her Dora bike from mom and dad which is what she had been asking for. Her Uncle Brad come in town from Chicago and got to spend some quality time with the girls and us. Mimi and Gram got to visit with us while we did a birthday dinner for her on Saturday. Morgan enjoyed her weekend and is pumped it's not even her birthday yet.
I'm looking forward to having a whole good week ahead of me this week and hopefully all will go well. I've got a CT scan next Monday the 28th before my next treatment which I'm looking forward to. We have room to be optimistic going into it but we'll have to wait and see. God is doing amazing things in my life right now. If any guys in the area are interested, I'm heading to SECC's Oldham County kickoff for forming Men's groups next Saturday the 26th. If any of you guys out here are interested in checking it out with me, let me know, I'd love to check it out with you. I'm looking forward to the meeting and look forward to further deepening my relationship.
On the homefront, we are doing well. I recovered probably quicker than I ever have. Last Friday I got to spend much of the day outside and played with the girls that majority of the afternoon. It was warm enough for me to be outside which was a true blessing. The sun was out half of the day and that was a true blessing. Most importantly, I truly cherished watching the girls play with big smiles on their faces. I got to push the girls on the swings and I lasted about 15 minutes which is actually a pretty good workout when you've got two of them going. I still had to take my 2 hour rest but the rest of the day seemed like an eternity. This weekend is Morgan's first birthday weekend. Her 4th birthday is Tuesday so we celebrated some this weekend and we'll celebrate some more next weekend. She got her Dora bike from mom and dad which is what she had been asking for. Her Uncle Brad come in town from Chicago and got to spend some quality time with the girls and us. Mimi and Gram got to visit with us while we did a birthday dinner for her on Saturday. Morgan enjoyed her weekend and is pumped it's not even her birthday yet.
I'm looking forward to having a whole good week ahead of me this week and hopefully all will go well. I've got a CT scan next Monday the 28th before my next treatment which I'm looking forward to. We have room to be optimistic going into it but we'll have to wait and see. God is doing amazing things in my life right now. If any guys in the area are interested, I'm heading to SECC's Oldham County kickoff for forming Men's groups next Saturday the 26th. If any of you guys out here are interested in checking it out with me, let me know, I'd love to check it out with you. I'm looking forward to the meeting and look forward to further deepening my relationship.
Thursday, February 17, 2011
thankful thursday
back with bullet points. this post will do me some good right now.
Tonight I am thankful for:
-Starbucks
-my job it is great distraction and the people in my industry are funny (it is a requirement to be sarcastic)
-Grey's
-my house and especially the new hardwood floors
-my friends
-my friends
-my friends
-all the rest of the Craig's organs that don't have cancer
-my girls are so cute
The girls school, Vanguard Acedemy, has been amazingly good to us. They let Hannah go whenever we need her to with no notice. We have dropped them off on days at a moments notice. They have checked in with the girls to make sure they are doing okay in class. Ann and her team have been so good to us. I hope one day we will be able to repay them in some way.
We do have so much to be thankful for.
Sometimes I have to remind myself of that.
Tonight I am thankful for:
-Starbucks
-my job it is great distraction and the people in my industry are funny (it is a requirement to be sarcastic)
-Grey's
-my house and especially the new hardwood floors
-my friends
-my friends
-my friends
-all the rest of the Craig's organs that don't have cancer
-my girls are so cute
The girls school, Vanguard Acedemy, has been amazingly good to us. They let Hannah go whenever we need her to with no notice. We have dropped them off on days at a moments notice. They have checked in with the girls to make sure they are doing okay in class. Ann and her team have been so good to us. I hope one day we will be able to repay them in some way.
We do have so much to be thankful for.
Sometimes I have to remind myself of that.
Pancreatic Action Network asks for your support
http://www.pancan.org/section_get_involved/advocate/advocacy_action_center.php
I hope that I am doing this correctly. There is a bill going through the Senate that has been postponed a couple times and is back up on the agenda.
Click on the above link and urge them all to co-sponsor the Pancreatic Cancer Research & Education Act (S. 362/H.R. 733) without delay. By working together and by building support for this legislation early with the new Congress, we can know, fight and end pancreatic cancer! (cut and paste from an email from pancreatic action network).
general website:
http://www.pancan.org/
There are several charts that illustrate how underfunded this cancer is compared to others.
Thanks for your help.
I hope that I am doing this correctly. There is a bill going through the Senate that has been postponed a couple times and is back up on the agenda.
Click on the above link and urge them all to co-sponsor the Pancreatic Cancer Research & Education Act (S. 362/H.R. 733) without delay. By working together and by building support for this legislation early with the new Congress, we can know, fight and end pancreatic cancer! (cut and paste from an email from pancreatic action network).
general website:
http://www.pancan.org/
There are several charts that illustrate how underfunded this cancer is compared to others.
Thanks for your help.
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