Overwhelmed has been the theme for the week. Monday we were overwhelmed with the fact that there were two more treatments. Not oh only two more but geeez how long are we going to do this? It was like whining from the backseat on a long road trip "are we there yet?" It felt like we were just pulling out of the driveway even though there was only two left.
So they dropped the Oxyplatin and I have decided not to be anxious about it. His progress is going in the right direction and who is to say it is all three drugs are making the numbers decrease. It was a good move for his overall health. You never know where that fine line of side effects are temporary or permanent. So we are not fretting about it. Just continuing to pray that things go in the right direction.
This Thursday I am overwhelmingly thankful that we are going to Houston to watch UK play in the final-four on Saturday night. A friend made the unselfish choice to send Craig and I to Houston for the weekend. She insisted to pay for the tickets and the outrageous plane fare. We are overwhelmingly thankful for the opportunity to not only see UK play but to get away for the weekend.
When people find out I am a UK fan they start talking players and championship games etc etc. Honestly, I know very little about the players (unless I read about their jorts on facebook) and I know very little about the past wins. The reason I bleed blue is not b/c of a great basketball team with banners but b/c of the amazing people I met there. The four years that I spent on that campus were full of great people. Probably the greatest people on earth. And the one that topped it off was Craig. He is the reason why I am a UK fan (even though when push comes to shove he is a UofL fan...hmmm what round did the Cards go down in...). We went to class together we spent most days together on campus. We made so many memories (some that we can't remember) there and loved our time at UK. So I am grateful for a weekend of making another UK memory and bringing home a W!
So that is Thankful Thursday, pretty easy one this week!
There are more dates and doctors appointments coming up that we will blog about later but tonight we are thankful for an OSU (!!!) fan's generousity to let two UK fans add another memory to the long list.
GO Cats!!!
This blog is set up to keep the family and friends of Craig Merimee informed about his journey with pancreatic cancer. Craig is a 34 year old who is a wonderful husband, amazing father and friend of many.
Thursday, March 31, 2011
Tuesday, March 29, 2011
treatment #11 & tumor marker at 13!!
Due to the neopathy (tingling in Craig's feet) we have opted to drop the Oxyplatin (sp?) from the chemo line-up. There is a fine line between temporary side effect and permanent was really unknown and since the treatment has worked so far we feel like it is a good calculated risk. Most people can not finish out this regiment so in order to finish up in some form or fashion this was the best move for the last two treatments.
Platelets are still low.
Tumor marker to come back later this afternoon.
Update: Tumor marker is a 13.2!!!!!!! WOW that is awesome.
More updates to come on next steps, CT scans dates, and second opinions. April is turning out to be a busy month. It may even start with a trip to Houston! :)
last CT scan after this treatment plan is scheduled for April 25th
last treatment scheduled for April 12th (the day before our 9th wedding anniversary)
So after the 26th of April we have a better feel for what is next.
We are off to Houston on Saturday morning! GO CATS!
Thanks for all the prayers we know that God answers each one of them in His own time.
Platelets are still low.
Tumor marker to come back later this afternoon.
Update: Tumor marker is a 13.2!!!!!!! WOW that is awesome.
More updates to come on next steps, CT scans dates, and second opinions. April is turning out to be a busy month. It may even start with a trip to Houston! :)
last CT scan after this treatment plan is scheduled for April 25th
last treatment scheduled for April 12th (the day before our 9th wedding anniversary)
So after the 26th of April we have a better feel for what is next.
We are off to Houston on Saturday morning! GO CATS!
Thanks for all the prayers we know that God answers each one of them in His own time.
Sunday, March 27, 2011
Go Cats!
Big win for the Cats today! I'm able to enjoy the games. They are kind of an escape from the real world. It makes you believe for the 2 hours that they are on that college basketball is really important. Everytime my alma mater wins, I get to escape again for another 2 hours. Hopefully I'll get 4 hours next weekend. I admire the heck out of Butler's and VCU's coaches, being 34 and 33 years old and being on top of the world. This whole tournament has been fun to watch. It really sets up well for UK but I'm sure Kansas thought it set up well for them, man did they choke. One of my favorite days of the year is when Duke gets knocked out of the tournament and I'm glad I stayed up to watch that one the other night; no going to bed even when Duke was down by double digits late in the game. Keeping with the escape theme, baseball opens up this week and I think this is the year for the Cubs. They are currently tied for first in their division right now, we'll see if they can keep the lead.
Back to the real world now, I've got treatment #11 on Tuesday. I'm starting to sense some real accomplishment with getting this far with this treatment. The more I'm learning from doctors and from fellow fighters that I've met in different ends of the country, this treatment is hard to complete and probably more often than not is actually completed. The side effects usually derail things. I've been able to stay on the schedule of having the treatment every 2 weeks except once I had to postpone a treatment a week. As a caveat, I hope I can finish it. My feet have have had a permanent tingle in the them for this week meaning my nerves are close to being shot in my feet. It's a line I'm worried about crossing because I'd rather be able to walk. We'll see what the doctor says on Tuesday before we start the treatment. I want to finish the treatment because its working but I have to be careful. Not much else to report. I have another appointment for a 3rd opinion scheduled the 1st week of April with Dr. Sharma. He's the head of the GI department at the James Graham Brown Center down at UofL so he'll be a valuable opinion. Other than that, I'm generally feeling really good.
As always, I'd like to thank God for giving me the good week and my praise goes to Him.
Back to the real world now, I've got treatment #11 on Tuesday. I'm starting to sense some real accomplishment with getting this far with this treatment. The more I'm learning from doctors and from fellow fighters that I've met in different ends of the country, this treatment is hard to complete and probably more often than not is actually completed. The side effects usually derail things. I've been able to stay on the schedule of having the treatment every 2 weeks except once I had to postpone a treatment a week. As a caveat, I hope I can finish it. My feet have have had a permanent tingle in the them for this week meaning my nerves are close to being shot in my feet. It's a line I'm worried about crossing because I'd rather be able to walk. We'll see what the doctor says on Tuesday before we start the treatment. I want to finish the treatment because its working but I have to be careful. Not much else to report. I have another appointment for a 3rd opinion scheduled the 1st week of April with Dr. Sharma. He's the head of the GI department at the James Graham Brown Center down at UofL so he'll be a valuable opinion. Other than that, I'm generally feeling really good.
As always, I'd like to thank God for giving me the good week and my praise goes to Him.
Friday, March 25, 2011
Switchfoot - Hello Hurricane
This has been my song this week. I play it over and over. I am working on adding a playlist to the blog but this is a great one for now. Check it out.
Thursday, March 24, 2011
Rollercoaster and Thankful Thursday
I haven't posted in a while b/c I really don't know what emotion to pick to talk about. Emotional roller coaster is a major understatement to say the least. After the appointment on Tuesday with Dr. Hirandi I was so exhausted I couldn't even form a sentence. It was a blessing to have someone explain everything in such detail. It was amazing. It was the first doctors appointment that I didn't come home googling or email my trifecta of doctor friends (Chris, Christy and Nick are my little email angels). At one point I stopped taking notes b/c he explained what I was going to google anyway. So that was huge.
But at the other end of that is the simple fact that a "success" with this disease is 2 years out. That just doesn't seem fair. And our lives will never be "normal" again. There will always be fear. The bible says do not be afraid about a million times but that is really hard to digest this state of our lives without having fear. Every time someone talks about a case of PC and how long that fought the good fight I do the math with my girls ages. In 3 years Emily will be 8, Morgan 7 and Hannah 3 etc etc How will we handle their emotions at that time. Hannah being older adds another person to worry about she will take certain news, treatment plans etc. But then again this is all "normal" to her which is just sad by itself.
I don't even remember what normal looks like any more. The past 5 months are such a blur. I was looking at my favorite picture of Emily and comparing it to pictures from this Christmas and somewhere in the last 5 months she turned 5. I know it was December 13th but somehow I missed the impact of my oldest turning from a 4 year old toddler to a 5 year old little girl. One night she came out of the bathroom after her bath fully dressed in PJ's, teeth brushed, hair brushed and so proud of herself. What the heck? She is old enough to get herself ready for bed? What?! When did this happen? relief of one less kid to dress but what the heck just happened in 5 years?
One early morning Hannah or Morgan (can't remember) got me up in the wee-hours of the morning and I was having a hard time getting back to sleep. I lay there trying to remember what it was like without cancer. I was racking my brain to think of a memory before October 4th. I can of course remember events but I wanted to remember what it felt not to think about cancer and it took me while to really get to a spot. I then remembered how I felt. HAPPY. I was so happy to have three girls and the business of a normal life. It was wonderful. And then I laid there and cried. I think my brain blocked that out for a reason. It is too hard to compare September 2010 to March of 2011. My energy should not be on looking back but to look forward in thanksgiving and hope. But for that moment I remembered how good we had it without this mess.
So on this Thankful Thursday I am thankful for a conversation with a doc that gets it. I am thankful that I didn't spend a lot of this week googling. I am thankful for supportive friends. I am thankful that Hannah has a new trick of shaking her head back and forth which is so cute. I am thankful for the sunshine this week. I am thankful for all the prayers and support for our family. And I am thankful for the resources that we have in this country and the many choices we do have.
But at the other end of that is the simple fact that a "success" with this disease is 2 years out. That just doesn't seem fair. And our lives will never be "normal" again. There will always be fear. The bible says do not be afraid about a million times but that is really hard to digest this state of our lives without having fear. Every time someone talks about a case of PC and how long that fought the good fight I do the math with my girls ages. In 3 years Emily will be 8, Morgan 7 and Hannah 3 etc etc How will we handle their emotions at that time. Hannah being older adds another person to worry about she will take certain news, treatment plans etc. But then again this is all "normal" to her which is just sad by itself.
I don't even remember what normal looks like any more. The past 5 months are such a blur. I was looking at my favorite picture of Emily and comparing it to pictures from this Christmas and somewhere in the last 5 months she turned 5. I know it was December 13th but somehow I missed the impact of my oldest turning from a 4 year old toddler to a 5 year old little girl. One night she came out of the bathroom after her bath fully dressed in PJ's, teeth brushed, hair brushed and so proud of herself. What the heck? She is old enough to get herself ready for bed? What?! When did this happen? relief of one less kid to dress but what the heck just happened in 5 years?
One early morning Hannah or Morgan (can't remember) got me up in the wee-hours of the morning and I was having a hard time getting back to sleep. I lay there trying to remember what it was like without cancer. I was racking my brain to think of a memory before October 4th. I can of course remember events but I wanted to remember what it felt not to think about cancer and it took me while to really get to a spot. I then remembered how I felt. HAPPY. I was so happy to have three girls and the business of a normal life. It was wonderful. And then I laid there and cried. I think my brain blocked that out for a reason. It is too hard to compare September 2010 to March of 2011. My energy should not be on looking back but to look forward in thanksgiving and hope. But for that moment I remembered how good we had it without this mess.
So on this Thankful Thursday I am thankful for a conversation with a doc that gets it. I am thankful that I didn't spend a lot of this week googling. I am thankful for supportive friends. I am thankful that Hannah has a new trick of shaking her head back and forth which is so cute. I am thankful for the sunshine this week. I am thankful for all the prayers and support for our family. And I am thankful for the resources that we have in this country and the many choices we do have.
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.