Karen's doing great. It feels like we are packing a lot into the summer and having a great time doing it. Last weekend we took the kids to a fairground for example and Ethan & Sydney enjoyed their first rollercoaster. As Ethan(2) said "my heart was going faster and faster". My own was not far off. We will write more about our adventures in future posts. Tonight I want to share a small way in which readers of this blog can help cancer research through Protein Folding.
What is protein folding?
Proteins are biology's workhorses -- its "nanomachines." Before proteins can carry out these important functions, they assemble themselves, or "fold." The process of protein folding, while critical and fundamental to virtually all of biology, in many ways remains a mystery.
How is folding linked to disease?
When proteins do not fold correctly (i.e. "misfold"), there can be serious consequences, including many well known diseases, such as Alzheimer's, Mad Cow (BSE), CJD, ALS, Huntington's, Parkinson's disease, and many Cancers and cancer-related syndromes.
If you'd like to learn more about Protein Folding visit Stanford University's page here: http://folding.stanford.edu/
How can I help?
Download the Folding at Home application from here: http://folding.stanford.edu/English/Download
This application runs in the background and downloads small packets of data from Stanford, performs some analysis on the data and then sends the results back to Stanford.
Will it slow my computer down?
No. The application runs entirely in the background on your PC's spare cycles, time the PC would otherwise be idle.
Ideally you could put it on every machine you have access to (office/work PCs are GREAT for this, especially if they're left on all night).
Do I have to register?
No. But you should put in the Team number for KarensCancer which is "144824". This will link your machine's work to Karen's team and we can track how much analysis has been completed as part of this effort.
Whilst this will not help Karen's case directly, the analysis may help researchers better understand what causes or contributes to cancer and other related diseases.
Monday, August 25, 2008
Sunday, August 10, 2008
Life is Sweet
Our Friday meeting with the wonderous Dr. Dan was great. I was ready to hear what he had to say, and take Don Macleod's words of wisdom to heart, "get the most you can out of your chemo."
Dr. Moriarty said that Dr. Ravikumar was really excited and happy with the most recent scans and really impressed. He couldn't believe how small things have gotten. Both Dr.'s are hoping that if the Oct/Nov PET scan comes back negative there will be no surgery involved. This is a good thing. I know Dr. Moriarty does not want to do surgery again if we can demolish this crap with chemo/erbitux and anything else that doesn't involve major surgery. Why? Because surgery too has its pitfalls and problems that comes along with it, and bottom line both he and Dr. Ravi agree it will not increase my chance for a cure/survival any more than other treatment options at this point.
As far as going back on chemo the plan is this. I will continue with Erbitux every two weeks for the next 3 months (erbitux is an anti-cancer drug not a chemo drug). We will watch my CEA level which Dr. Dan said has been very sensitive up until this point and we will watch that to determine wether to throw the cpt-11 (chemo) back in. Basically if it starts to go up a lot I am back on chemo and that is totally fine with me. I feel that I have regrouped and I am ready to "have at it" as it were if necessary. I am very lucky that my chemo is still effective and that my tumors have continued to respond this long.
In regards to the great news two weeks ago things have been amazing. I feel that I just walked away from a 20 car pile-up on the highway completely unscathed. I have experienced joy that I never felt before and a freedom from a constant underlying fear and panic that I have been dealing with for almost a year and a half. I am so very grateful to God. Miracles may not happen overnight but they do happen. Our prayers don't always seem to be answered the way we think they need to be but they are answered beyond our wildest dreams.
I said to Dr. Dan on Friday that when I came to see him in May of 07 "I was on death row right?" and he said "Karen, you were very, very sick. And I can honestly say without a shadow of a doubt, you are in the top 5 of all time best responders to treatment I have ever seen." I have chills right now relaying that. I said to him that that was great but also very scary.
Jesus said that all we need is the faith of a mustard seed to move mountains. I remember being a little girl and if I saw mountains I would say to myself "okay Jesus move that mountain." Of course that hasn't happened until now and its not because of my faith but of all you amazing, amazing, giving people who have been praying for me and asking others to pray for me and my family. It is because of your faith I am going to live to be old and full of wrinkles.
I cannot tell you how humbling it is and I continue to thank you all from the bottom of my heart and my family's. Please know I pray for you all as well. I know I continue to have a long road ahead but I have a road, and I get to walk on it with all those whom I love. Thank you God.
I will continue to meet with Dr. Dan every two weeks before I go have my erbitux as we watch and see how things go. You are all in my prayers and thank you just doesn't express how grateful I am that all of you and your love and prayers have gotten me so far. Jesus loves each of us and always hears us.
Love,
Karen
Dr. Moriarty said that Dr. Ravikumar was really excited and happy with the most recent scans and really impressed. He couldn't believe how small things have gotten. Both Dr.'s are hoping that if the Oct/Nov PET scan comes back negative there will be no surgery involved. This is a good thing. I know Dr. Moriarty does not want to do surgery again if we can demolish this crap with chemo/erbitux and anything else that doesn't involve major surgery. Why? Because surgery too has its pitfalls and problems that comes along with it, and bottom line both he and Dr. Ravi agree it will not increase my chance for a cure/survival any more than other treatment options at this point.
As far as going back on chemo the plan is this. I will continue with Erbitux every two weeks for the next 3 months (erbitux is an anti-cancer drug not a chemo drug). We will watch my CEA level which Dr. Dan said has been very sensitive up until this point and we will watch that to determine wether to throw the cpt-11 (chemo) back in. Basically if it starts to go up a lot I am back on chemo and that is totally fine with me. I feel that I have regrouped and I am ready to "have at it" as it were if necessary. I am very lucky that my chemo is still effective and that my tumors have continued to respond this long.
In regards to the great news two weeks ago things have been amazing. I feel that I just walked away from a 20 car pile-up on the highway completely unscathed. I have experienced joy that I never felt before and a freedom from a constant underlying fear and panic that I have been dealing with for almost a year and a half. I am so very grateful to God. Miracles may not happen overnight but they do happen. Our prayers don't always seem to be answered the way we think they need to be but they are answered beyond our wildest dreams.
I said to Dr. Dan on Friday that when I came to see him in May of 07 "I was on death row right?" and he said "Karen, you were very, very sick. And I can honestly say without a shadow of a doubt, you are in the top 5 of all time best responders to treatment I have ever seen." I have chills right now relaying that. I said to him that that was great but also very scary.
Jesus said that all we need is the faith of a mustard seed to move mountains. I remember being a little girl and if I saw mountains I would say to myself "okay Jesus move that mountain." Of course that hasn't happened until now and its not because of my faith but of all you amazing, amazing, giving people who have been praying for me and asking others to pray for me and my family. It is because of your faith I am going to live to be old and full of wrinkles.
I cannot tell you how humbling it is and I continue to thank you all from the bottom of my heart and my family's. Please know I pray for you all as well. I know I continue to have a long road ahead but I have a road, and I get to walk on it with all those whom I love. Thank you God.
I will continue to meet with Dr. Dan every two weeks before I go have my erbitux as we watch and see how things go. You are all in my prayers and thank you just doesn't express how grateful I am that all of you and your love and prayers have gotten me so far. Jesus loves each of us and always hears us.
Love,
Karen
Wednesday, August 6, 2008
Surgery Review and More Chemo
Over the last week our surgeon (Ravikumar) has been reviewing the scans from the 28th July with our oncologist (Moriarty). Today we got a call from Ravikumar's office and spoke to the nurse there.
Essentially he's very happy with the progress and it is significant progress since January. On the down side he recommended 3 more months of chemo followed by a PET scan and another consultation. That will bring us to November.
Whilst it's great news of course that the scans are so good, I can't shake the pit in my stomach at the thoughts of 4 more rounds of chemo with no real knowledge of what lies at the end of it.
We're meeting with Moriarty in person on Friday to discuss in detail and hope to get clarification on what has been discussed. I have a lot of questions. We're going to ask for a 2nd surgical opinion from another doctor we've been researching.
Karen has been a trouper and amazingly strong throughout the day and once again I'm leaning on her instead of the other way around.
Essentially he's very happy with the progress and it is significant progress since January. On the down side he recommended 3 more months of chemo followed by a PET scan and another consultation. That will bring us to November.
Whilst it's great news of course that the scans are so good, I can't shake the pit in my stomach at the thoughts of 4 more rounds of chemo with no real knowledge of what lies at the end of it.
We're meeting with Moriarty in person on Friday to discuss in detail and hope to get clarification on what has been discussed. I have a lot of questions. We're going to ask for a 2nd surgical opinion from another doctor we've been researching.
Karen has been a trouper and amazingly strong throughout the day and once again I'm leaning on her instead of the other way around.
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