Karen's doing well. Earlier this week Karen managed to get a cancellation at the surgeon's so we met with Doctor Chamberlain today. We are a few steps closer to a concrete plan.
The location of the tumor is above a critical vein in Karen's liver. Normally you'd have 2 or 3 veins going in and out of the liver but because of Karen's resection she has only 1 left. That's not a big deal but the location of the tumor is fairly close to this vein and that makes surgery very difficult.
Our best option is Radio Frequency Ablation which involves burning the tumor with radio waves. The radio waves must heat the tumor to 70C for a 14 mins in order to get a good kill. The vein will act as a heat sink since blood is flowing through it, cooling the cells. It is also likely that the radiologist will not want to burn that close to the vein.
To get the remaining cells we'll resort to Cyberknife which is targeted radiation. This can get close to the vein which will tolerate the radiation pretty well. On the flip side the liver doesn't tolerate radiation very well so we're trying to minimize the amount of radiation by using the RFA first.
The game plan is yet to be confirmed but Chamberlain is trying to get us in next Monday or Tuesday (21st or 22nd of December). The RFA would involve a night or two in hospital but overall be non-invasive. The Cyberknife would not be done until a few weeks into January.
Appointments are still being made and hopefully we find out tomorrow what the schedule is.
Wednesday, December 16, 2009
Thursday, December 10, 2009
Evaluating Our Options
Karen's doing well. She's amazing actually, considering the few weeks we've had. Her mental fortitude would put Navy Seals to shame. More stress than I care to mention.
As the last post indicated, a PET scan showed cancerous activity in K's liver. We had a subsequent MRI. The MRI machine "broke" so that had to be rescheduled. Moriarty had some vacation which made scheduling difficult but we figured it out.
The MRI says there's a 2cm X 2cm sized tumor in Karen's liver above some veins. This is not good news considering this was an area already treated.
We do have some options, one of which we investigated today. Dr. Moriarty referred us to Dr. Schwartz, a radiation oncologist (someone who treats cancer with radiation). With tremendous luck we were able to get an appointment.
Schwartz walked us through the radiation option which amounts to a thing called the Cyberknife. Sterotactic Radiotherapy. What would happen is that 3 or 4 pieces of gold would be placed in Karen as markers. Then a special cushion of her body would be made. After the gold has settled (about 1 week) the surgeon would perform a very very fine CT scan of her abdomen. Then as Schwartz said, "the physicists take over" and they build a plan to shoot radiation into the tumor from every angle. Imagine an orange stabbed with a hundred knitting needless.
There's a 70-80% chance of the tumor being responsive to this and dying. That said there are better options; surgery first, RFA second, radiation being third in the list. If the radiation is done and cancer comes back in the same area, radiation cannot be used again and it would make future surgery more complex.
We will meet with Chamberlain (our surgeon) on the 23rd to explore surgery as an option. Rest assured, we will get to NED again.
Peace,
-fs
As the last post indicated, a PET scan showed cancerous activity in K's liver. We had a subsequent MRI. The MRI machine "broke" so that had to be rescheduled. Moriarty had some vacation which made scheduling difficult but we figured it out.
The MRI says there's a 2cm X 2cm sized tumor in Karen's liver above some veins. This is not good news considering this was an area already treated.
We do have some options, one of which we investigated today. Dr. Moriarty referred us to Dr. Schwartz, a radiation oncologist (someone who treats cancer with radiation). With tremendous luck we were able to get an appointment.
Schwartz walked us through the radiation option which amounts to a thing called the Cyberknife. Sterotactic Radiotherapy. What would happen is that 3 or 4 pieces of gold would be placed in Karen as markers. Then a special cushion of her body would be made. After the gold has settled (about 1 week) the surgeon would perform a very very fine CT scan of her abdomen. Then as Schwartz said, "the physicists take over" and they build a plan to shoot radiation into the tumor from every angle. Imagine an orange stabbed with a hundred knitting needless.
There's a 70-80% chance of the tumor being responsive to this and dying. That said there are better options; surgery first, RFA second, radiation being third in the list. If the radiation is done and cancer comes back in the same area, radiation cannot be used again and it would make future surgery more complex.
We will meet with Chamberlain (our surgeon) on the 23rd to explore surgery as an option. Rest assured, we will get to NED again.
Peace,
-fs
Sunday, November 22, 2009
The Cancer Has Resurfaced
Well the title gives away all the surprise I guess. We had our scan on Wed. the 18th and met with Dr. Moriarty on Friday the 20th and the news was not good. The pet/ct had picked up an area of high metabolic activity in the upper right area of my liver. Translation - new tumor growth. From the pet scan we can't tell how big the tumor is so I am going to have an MRI done to determine that. Once we know the details of this we will decide what we are going to do.
The first choices would be rfa (radio frequency ablation), and the second would be the Cyberknife or vice verse, I don't remember to be honest. However chemo, erbitux is still on the table as treatment options.
Now recurrence is pretty common in this whole resection situation. But it doesn't make it suck any less. Honestly I am devastated, crushed and mad.
I would love to go through a few crates of plates and smash them against a wall for a couple of hours. And though I know recurrence happens, and would likely happen to me I cannot for the life of me get into a "positive attitude" frame of mind yet. I just can't. All I can think about is my kids. I can hardly write this blog.
To have the months go by with the NED (no evidence of disease) label, I was slowly feeling human again, and looking that way too. In the last month or so I was allowing myself to kind of think that maybe it's true, that it wasn't going to come back, I was starting to breathe a sigh of relief. I think that is why now I am so upset. I feel like to have it come back brings my chances of beating it way, way down. I cannot grasp onto a modicum of positive thinking.
I don't mean to make this blog so emotional, but for those of you who know me I kind of wear my heart on my sleeve so I cant help it. I am being a baby and I don't want to deal with this bullshit anymore. People say oh now's a time to do what you've dreamed to go out and do what you' ve always wanted. Well you know what I was. I am a pretty simple person and I wanted to be a dental hygienist and I just want to raise my kids, I was already doing it.
I am sorry friends this is a horribly written blog. I should have let Fran do it. But I am indulging in some venting I guess.
I will keep everyone posted on the goings on. We won't know anymore regarding the mri and such until after Thanksgiving.
Love,
Karen
The first choices would be rfa (radio frequency ablation), and the second would be the Cyberknife or vice verse, I don't remember to be honest. However chemo, erbitux is still on the table as treatment options.
Now recurrence is pretty common in this whole resection situation. But it doesn't make it suck any less. Honestly I am devastated, crushed and mad.
I would love to go through a few crates of plates and smash them against a wall for a couple of hours. And though I know recurrence happens, and would likely happen to me I cannot for the life of me get into a "positive attitude" frame of mind yet. I just can't. All I can think about is my kids. I can hardly write this blog.
To have the months go by with the NED (no evidence of disease) label, I was slowly feeling human again, and looking that way too. In the last month or so I was allowing myself to kind of think that maybe it's true, that it wasn't going to come back, I was starting to breathe a sigh of relief. I think that is why now I am so upset. I feel like to have it come back brings my chances of beating it way, way down. I cannot grasp onto a modicum of positive thinking.
I don't mean to make this blog so emotional, but for those of you who know me I kind of wear my heart on my sleeve so I cant help it. I am being a baby and I don't want to deal with this bullshit anymore. People say oh now's a time to do what you've dreamed to go out and do what you' ve always wanted. Well you know what I was. I am a pretty simple person and I wanted to be a dental hygienist and I just want to raise my kids, I was already doing it.
I am sorry friends this is a horribly written blog. I should have let Fran do it. But I am indulging in some venting I guess.
I will keep everyone posted on the goings on. We won't know anymore regarding the mri and such until after Thanksgiving.
Love,
Karen
Saturday, November 14, 2009
Rising CEA
Hello friends. Well I haven't posted in awhile because I was waiting for something concrete to post.
I have been doing emotionally, and mentally great. I still battle chronic fatique but that's not really a great concern. Overall I have been doing great.
However my cea level has been rising over the last two months (I get it checked every month). It went from 5 to 10 and is now as of last Wednesday 17. Usually its indicitive of some disease activity going on. We are going to have a pet/ct scan done next week, though I don't know the day yet. The cea level is a tricky thing doctors use it as a guide, not a diagnostic tool. Dr. Moriarty told me he has seen countless patients with cea levels rise and plummet, seen people with little or no viable tumor, and high cea numbers and vice versa.
We may do the scan and nothing may show up. What do we do then? I don't know, we are just going to take it one step at a time.
I have been doing emotionally, and mentally great. I still battle chronic fatique but that's not really a great concern. Overall I have been doing great.
However my cea level has been rising over the last two months (I get it checked every month). It went from 5 to 10 and is now as of last Wednesday 17. Usually its indicitive of some disease activity going on. We are going to have a pet/ct scan done next week, though I don't know the day yet. The cea level is a tricky thing doctors use it as a guide, not a diagnostic tool. Dr. Moriarty told me he has seen countless patients with cea levels rise and plummet, seen people with little or no viable tumor, and high cea numbers and vice versa.
We may do the scan and nothing may show up. What do we do then? I don't know, we are just going to take it one step at a time.
So it's just something that stinks, and of course we would all like to see the cea at 0 or even a 3. I was pretty crushed on Friday after talking to Dr. Moriarty as was Fran, but I am ready to do what I have to do, but I don't want to do it. I would reaaaaalllly like to stick my head in the sand. The last 6 or 7 months have been such a gift and I greedily don't want to give that up.
Having said that, this is what people with cancer deal with all the time and I just have to "woman up" and deal. So that's what I am going to do.
Having said that, this is what people with cancer deal with all the time and I just have to "woman up" and deal. So that's what I am going to do.
I keep praying for you all. Please enjoy life, be patient with your kids, and give them lots of hugs, no matter how old they are.
Love,
Karen
Friday, August 28, 2009
Another Crystal Clear Hurdle
Well I'll just be out with it then. We met with Dr. Moriarty today. To be honest I was a nervous wreck. By the time we got into the waiting room my heart was pounding in my chest. The last two weeks have been an especially mentally torturous. I just knew there had to be something wrong. I was ready to hear the bad. Did I know what that meant? No. But I was really expecting it.
I thought for sure this time I would be meeting with the chemo nurses, scheduling appts, preparing my family, telling myself to get ready for treatments, get ready to go bald. I couldn't get my head out of this place, that something would be there on the scans.
By the time I was in the exam room waiting for Dr. Dan I was in tears. They just were flowing and I couldn't stop them. Super nurses Kathy and Kim came in and said we just asked Moriarty what the scans were like so you wouldn't sit here suffering and he said "great" that they are "great." I just couldn't believe it. They were like "hey aren't you happy?" and I just was to afraid to believe it.
Then he poked his head in before seeing the patient waiting before me, and said "they're great!" I thought to myself I need to see the scans. I needed to look at that liver.
Then he comes in and puts the report in front of me and says "here look." He points to the last sentence "No evidence of new metastatic lesion." So then of course I go over some organs, "nothing in the ovaries? lung? pancreas?? nothing??? "Karen there's nothing."
"Can I see the scans??????? "
"Yesssss Kaaaren you can see the scans." So my amazing Dr. Moriarty takes me and Fran to the scans and carefully goes over them.
"what's that, that right there?? Those big spaces????
He patiently says "it's air, it's gas Karen." Oh
"okay what's all this crap over here?"
"It's dressing from your surgery that stays in there." Oh
"what's this junk, what's that?"
"it's this and your that." Oh
He compared my old, crap tumor-filled liver to the new liver the incredible genius Dr. Chamberlain gave me. It was a beautiful thing. My new liver has no holes, shadows and scary stuff in it. No cancer. And none anywhere else.
I'm still crying. I'm still stunned. People may think "well your cancer was already gone 6 months ago."
Well I don't know how other people are (who have/had cancer) but for me I live life one day at a time, and for now in every three month intervals, and thats not a complaint but just a fact of life for now, but the main thing is I live. I am so joyously happy. I feel a few more feet away from the nightmare, peeking around corners, carefully taking my steps.
Where would I be without Dr. Moriarty? I don't know. He will never know how much he means to me. He is an amazing, smart, wise doctor, who (in my opinion knows everything) he has saved my life and I love and adore him.
Where would I be without Kathy, Kim, Chris, Sonya, and Gina these nurses who are precious and priceless to me. They have helped carry me, push me and hold me for the last 2.5 years during the darkest time of my life. Thank you, thank you, thank you.
Thank you Dr. Chamberlain who is smart, agressive, and cares and respects his patients so much. Thank you for saving my life.
I just want people to know how amazing these people are. They are angels, they are healers, but to them they are just doing their jobs. I thank you God for each and every one of them.
I just want to thank all of you for your continued prayers and support. All of the comments, emails, notes, etc. really do mean so much to me. They fuel me and keep me going. I do continue to pray for you all.
Thank you to my husband and my children for sticking by me and loving me. And to my parents and siblings for all your love and support. Thank you to all my friends and the people who I hardly know who continue to carry and support and pray for me. There aren't enough words.
I am so very grateful, so humbled that I am still here. It does not escape me ever. Thank you merciful God.
With much love,
Karen
I thought for sure this time I would be meeting with the chemo nurses, scheduling appts, preparing my family, telling myself to get ready for treatments, get ready to go bald. I couldn't get my head out of this place, that something would be there on the scans.
By the time I was in the exam room waiting for Dr. Dan I was in tears. They just were flowing and I couldn't stop them. Super nurses Kathy and Kim came in and said we just asked Moriarty what the scans were like so you wouldn't sit here suffering and he said "great" that they are "great." I just couldn't believe it. They were like "hey aren't you happy?" and I just was to afraid to believe it.
Then he poked his head in before seeing the patient waiting before me, and said "they're great!" I thought to myself I need to see the scans. I needed to look at that liver.
Then he comes in and puts the report in front of me and says "here look." He points to the last sentence "No evidence of new metastatic lesion." So then of course I go over some organs, "nothing in the ovaries? lung? pancreas?? nothing??? "Karen there's nothing."
"Can I see the scans??????? "
"Yesssss Kaaaren you can see the scans." So my amazing Dr. Moriarty takes me and Fran to the scans and carefully goes over them.
"what's that, that right there?? Those big spaces????
He patiently says "it's air, it's gas Karen." Oh
"okay what's all this crap over here?"
"It's dressing from your surgery that stays in there." Oh
"what's this junk, what's that?"
"it's this and your that." Oh
He compared my old, crap tumor-filled liver to the new liver the incredible genius Dr. Chamberlain gave me. It was a beautiful thing. My new liver has no holes, shadows and scary stuff in it. No cancer. And none anywhere else.
I'm still crying. I'm still stunned. People may think "well your cancer was already gone 6 months ago."
Well I don't know how other people are (who have/had cancer) but for me I live life one day at a time, and for now in every three month intervals, and thats not a complaint but just a fact of life for now, but the main thing is I live. I am so joyously happy. I feel a few more feet away from the nightmare, peeking around corners, carefully taking my steps.
Where would I be without Dr. Moriarty? I don't know. He will never know how much he means to me. He is an amazing, smart, wise doctor, who (in my opinion knows everything) he has saved my life and I love and adore him.
Where would I be without Kathy, Kim, Chris, Sonya, and Gina these nurses who are precious and priceless to me. They have helped carry me, push me and hold me for the last 2.5 years during the darkest time of my life. Thank you, thank you, thank you.
Thank you Dr. Chamberlain who is smart, agressive, and cares and respects his patients so much. Thank you for saving my life.
I just want people to know how amazing these people are. They are angels, they are healers, but to them they are just doing their jobs. I thank you God for each and every one of them.
I just want to thank all of you for your continued prayers and support. All of the comments, emails, notes, etc. really do mean so much to me. They fuel me and keep me going. I do continue to pray for you all.
Thank you to my husband and my children for sticking by me and loving me. And to my parents and siblings for all your love and support. Thank you to all my friends and the people who I hardly know who continue to carry and support and pray for me. There aren't enough words.
I am so very grateful, so humbled that I am still here. It does not escape me ever. Thank you merciful God.
With much love,
Karen
Tuesday, August 18, 2009
Scan Dates
Hello friends. I have my ct scan scheduled for August 26th with the review scheduled for 28th with Dr. Moriarty. When we know the results good, bad or ugly we shall share them with you all. I am hopeful but naturally very apprehensive, which of course does nothing, and produces nothing, but they are emotions I don't think any cancer patient escapes when it's "scan time." Some days I have myself convinced its back, and other days I say to myself there is no way it will ever come back, and so it goes. Please keep us in your prayers.
I am feeling much better physically and mentally. I am tired a lot, but I am also exercising a lot and attributing my fatigue to that at the moment. I really cannot complain. Things are going well.
I would also like to acknowledgthe passing of our friend Christine Niemi. Her blog link is on the sidebar of my blog "coloncancersucksass" which of course it does.
She passed away July 18th 2009. She was 32. She was the first "young" stage 4 cancer patient who I befriended when I was diagnosed, terrified, and frantic to find "someone like me," and of course she befriended me right back. She was a comforting friend to me but didn't mince words about how bad this cancer is or how bad it gets. I loved her honesty. She was an extremely strong woman. Going to graduate school throughout her treatment and lobbying congress about colon cancer prevention, and screening for those who were in need of it and uninsured. You can read about you tenacity, courage, and drive here http://fightcolorectalcancer.org/c3_news/2009/07/c3_advocate_christine_niemi_dies
Christine I will miss having you as a friend and someone who I looked up to. May you be resting peacefully in heaven suffering no longer. My condolences to her family and those grieving her loss.
Let keep praying for each other.
With much love,
Karen
I am feeling much better physically and mentally. I am tired a lot, but I am also exercising a lot and attributing my fatigue to that at the moment. I really cannot complain. Things are going well.
I would also like to acknowledgthe passing of our friend Christine Niemi. Her blog link is on the sidebar of my blog "coloncancersucksass" which of course it does.
She passed away July 18th 2009. She was 32. She was the first "young" stage 4 cancer patient who I befriended when I was diagnosed, terrified, and frantic to find "someone like me," and of course she befriended me right back. She was a comforting friend to me but didn't mince words about how bad this cancer is or how bad it gets. I loved her honesty. She was an extremely strong woman. Going to graduate school throughout her treatment and lobbying congress about colon cancer prevention, and screening for those who were in need of it and uninsured. You can read about you tenacity, courage, and drive here http://fightcolorectalcancer.org/c3_news/2009/07/c3_advocate_christine_niemi_dies
Christine I will miss having you as a friend and someone who I looked up to. May you be resting peacefully in heaven suffering no longer. My condolences to her family and those grieving her loss.
Let keep praying for each other.
With much love,
Karen
Sunday, August 2, 2009
People are Awesome
I have no news here - which is good news right? I just came across this woman's incredible story. She is a tough chick and I love it. I just wanted to post her link here.
http://www.voicesofsurvivors.com/Voices_of_Survivors/Written_Word/Entries/2009/6/8_My_Voice_by_Suzanne_Lindley.html
Defying the odds...yea that's a good thing. That's the club I want to be in.
I love you all. And I am praying for you all too.
Love,
Karen
http://www.voicesofsurvivors.com/Voices_of_Survivors/Written_Word/Entries/2009/6/8_My_Voice_by_Suzanne_Lindley.html
Defying the odds...yea that's a good thing. That's the club I want to be in.
I love you all. And I am praying for you all too.
Love,
Karen
Thursday, July 23, 2009
Light in the Darkness is Good
Just a quick post to say my emotional and mental faculties are doing much better.
I am glad to be off of the narcotics (which were necessary at the time) but absolute hell in getting off of in terms of the withdrawal symptoms. After changing my antidepressant about 2 weeks ago and being able to finally sleep through the night I am starting to feel like a stable person again.
I thank God for every single day that I have on this earth. I am so happy to be disease free and I am physically starting to feel pretty decent. We are just gonna take the rest of the summer very slow and very easy. Our family is just gonna eat, sleep, and play. Sounds good eh?
I don't have it scheduled yet but I will have a scan at the end of August (just like my pal Adam) and hopefully our blogs, following the scan reviews, will be glowing with good news.
And Don I know your scans are first. I pray they bring nothing but beauty and that the docs see nuthin.
Much love,
Karen
I am glad to be off of the narcotics (which were necessary at the time) but absolute hell in getting off of in terms of the withdrawal symptoms. After changing my antidepressant about 2 weeks ago and being able to finally sleep through the night I am starting to feel like a stable person again.
I thank God for every single day that I have on this earth. I am so happy to be disease free and I am physically starting to feel pretty decent. We are just gonna take the rest of the summer very slow and very easy. Our family is just gonna eat, sleep, and play. Sounds good eh?
I don't have it scheduled yet but I will have a scan at the end of August (just like my pal Adam) and hopefully our blogs, following the scan reviews, will be glowing with good news.
And Don I know your scans are first. I pray they bring nothing but beauty and that the docs see nuthin.
Much love,
Karen
Thursday, July 9, 2009
In Response and an Update
I received a comment from the last blog last night that I just have to respond to. I say this from a place of love but of great passion.
In response to the last comment. I give God all the credit. He blessed all who have helped me with exceptional gifts, intelligence and talents. My surgeon, oncologist, nurses and countless others who have helped me become free of this disease chose to use their talents to help others and in that shines God. God did not give me cancer or allow it but through my free will I was able to pray, cry and beg God along with many others to be merciful and get me well and he has done that through all the people I just mentioned.
God didn't prevent His only Son from dying on the cross either. But through that amazing sacrifice we can now have eternal life through the forgiveness of Jesus Christ.
God has everything to do with my life and He always has. From the smallest detail to the largest event. He loves me and He loves you whether we always feel that way or not. But thanks for your honest feelings.
Now a bit of an update. I haven't posted due to numerous struggles that I have been hesitant to talk about. Things are incredible that is to be very sure. I cannot believe I still do not have cancer. I am very grateful.
However since my last hospitalization in April for severe pain I was put on a lot of very strong narcotics. Since that time up until the present I have been going through the arduous task of getting off of those and dealing with nasty withdrawal symptoms. My pain doctor has been always a phone call a way monitoring me constantly and of course I have my rock Dr. Moriarty who has been staying on top of it all as well. But most mornings when I wake up I feel like a very large sack of crap. I am hoping as all the toxins leave my system this will end.
However I am very mentally drained from all this. (I ask forgiveness for even complaining because I have lost too many friends from this disease lately who would give anything to be complaining about this now). And after this 2.5 year battle I feel a shell of the person I once was. My amazing cancer nurses are telling me how all this if very normal for cancer survivors. Nonetheless I feel horribly guilty for not being, I don't know, for I guess not skipping through the tulips as they say. I am currently looking into a survivor support group. I guess these emotions, compounded with detox of so many substances, and the last 2 years on top of it, it is all crashing down on me at once from a mental and emotional standpoint.
I know this too shall pass. And I continually as God to carry me through this. But yes I have let the thoughts creep in "God why are you doing this to me??" I have always been an optimistic person but now I feel a bit broken and say yes okay "life is very, very hard." And I am finding some days it is very difficult to get out of bed. I don't know what the hell is wrong with me. Please don't be disgusted with me friends. I know have been given a second chance at life. I am grateful for it. I am on my knees most nights before I go to bed and I say Thank You my Jesus.
Thank you for listening and thank you for your prayers.
With much love,
Karen
In response to the last comment. I give God all the credit. He blessed all who have helped me with exceptional gifts, intelligence and talents. My surgeon, oncologist, nurses and countless others who have helped me become free of this disease chose to use their talents to help others and in that shines God. God did not give me cancer or allow it but through my free will I was able to pray, cry and beg God along with many others to be merciful and get me well and he has done that through all the people I just mentioned.
God didn't prevent His only Son from dying on the cross either. But through that amazing sacrifice we can now have eternal life through the forgiveness of Jesus Christ.
God has everything to do with my life and He always has. From the smallest detail to the largest event. He loves me and He loves you whether we always feel that way or not. But thanks for your honest feelings.
Now a bit of an update. I haven't posted due to numerous struggles that I have been hesitant to talk about. Things are incredible that is to be very sure. I cannot believe I still do not have cancer. I am very grateful.
However since my last hospitalization in April for severe pain I was put on a lot of very strong narcotics. Since that time up until the present I have been going through the arduous task of getting off of those and dealing with nasty withdrawal symptoms. My pain doctor has been always a phone call a way monitoring me constantly and of course I have my rock Dr. Moriarty who has been staying on top of it all as well. But most mornings when I wake up I feel like a very large sack of crap. I am hoping as all the toxins leave my system this will end.
However I am very mentally drained from all this. (I ask forgiveness for even complaining because I have lost too many friends from this disease lately who would give anything to be complaining about this now). And after this 2.5 year battle I feel a shell of the person I once was. My amazing cancer nurses are telling me how all this if very normal for cancer survivors. Nonetheless I feel horribly guilty for not being, I don't know, for I guess not skipping through the tulips as they say. I am currently looking into a survivor support group. I guess these emotions, compounded with detox of so many substances, and the last 2 years on top of it, it is all crashing down on me at once from a mental and emotional standpoint.
I know this too shall pass. And I continually as God to carry me through this. But yes I have let the thoughts creep in "God why are you doing this to me??" I have always been an optimistic person but now I feel a bit broken and say yes okay "life is very, very hard." And I am finding some days it is very difficult to get out of bed. I don't know what the hell is wrong with me. Please don't be disgusted with me friends. I know have been given a second chance at life. I am grateful for it. I am on my knees most nights before I go to bed and I say Thank You my Jesus.
Thank you for listening and thank you for your prayers.
With much love,
Karen
Wednesday, June 10, 2009
Never Say Never...Uhhhh NEVER!
I am sorry we haven't posted in a bit. But believe me it is worth the wait.
This morning we (Fran and I) went to see my surgeon Dr. Chamberlain to review the CT scans I had done a week or so ago. For me this was going to be the official word, the stamp in my book that said I'm still cancerous or I am not. Because yes, cancer can come back as early as three months post op. And because of this very long recovery I have been experiencing (translation - feeling like crap every day) I didn't feel very disease free, so to speak.
But Dr. Chamberlain came in and said "well your scans are completely clean. You are 100% cancer free." I had nothing anywhere! I read the report and there are no shadows, no "areas suggestive of carcinoma blah, blah, blah." I have a brand new liver thanks to the incredible Dr. Chamberlain and she's a beauty!!!!
I am meeting with my wonderful Dr. Moriarty next Tuesday to talk about the scan there as well and what will happen next. He already had told me he is not putting me on anymore chemo or erbitux anytime soon to give my body a badly, and I mean badly, needed break.
There really are no words to describe how this all feels. This is beyond my wildest dreams. I am overcome with joy, and humility all at the same time. I have been so blessed with really incredible doctors, with really incredible staff since the beginning of this horrific nightmare. My family and friends and strangers from all over have been supportive and loving and caring not just to me but to my husband and my children. I honestly don't know what to say. I really don't. I keep staring at the screen because I am just dumbfounded not just by today but by the last 2.5 years.
I will continue to post of course. I can't say thank you enough times to everyone. I do selfishly ask for continued prayers though, that I never experience a recurrance. That should be an easy one for God right?
I am going to enjoy the rest of the evening hanging out with my hubby in great peace and tranquility.
With a grateful, and humble heart and say thank you.
With much love,
Karen
This morning we (Fran and I) went to see my surgeon Dr. Chamberlain to review the CT scans I had done a week or so ago. For me this was going to be the official word, the stamp in my book that said I'm still cancerous or I am not. Because yes, cancer can come back as early as three months post op. And because of this very long recovery I have been experiencing (translation - feeling like crap every day) I didn't feel very disease free, so to speak.
But Dr. Chamberlain came in and said "well your scans are completely clean. You are 100% cancer free." I had nothing anywhere! I read the report and there are no shadows, no "areas suggestive of carcinoma blah, blah, blah." I have a brand new liver thanks to the incredible Dr. Chamberlain and she's a beauty!!!!
I am meeting with my wonderful Dr. Moriarty next Tuesday to talk about the scan there as well and what will happen next. He already had told me he is not putting me on anymore chemo or erbitux anytime soon to give my body a badly, and I mean badly, needed break.
There really are no words to describe how this all feels. This is beyond my wildest dreams. I am overcome with joy, and humility all at the same time. I have been so blessed with really incredible doctors, with really incredible staff since the beginning of this horrific nightmare. My family and friends and strangers from all over have been supportive and loving and caring not just to me but to my husband and my children. I honestly don't know what to say. I really don't. I keep staring at the screen because I am just dumbfounded not just by today but by the last 2.5 years.
I will continue to post of course. I can't say thank you enough times to everyone. I do selfishly ask for continued prayers though, that I never experience a recurrance. That should be an easy one for God right?
I am going to enjoy the rest of the evening hanging out with my hubby in great peace and tranquility.
With a grateful, and humble heart and say thank you.
With much love,
Karen
Saturday, May 9, 2009
Happy Birthday Karen!!!
Today is Karen's birthday. Our kids are still a bit young to be blogging so I'll write on their behalf.
What can I say? The past two years stretch out behind us in stark contrast to the years before. We all experience hurdles in life and it's fair to say we are defined by how we respond to those challenges. Karen has been through such a roller coaster of physical and mental highs and lows. Karen's strength has been evident throughout. In what has seemed at times to be a tremendous storm, Karen has been calm and steady. She has maintained a core of faith and always ensured we as a family have been cared for.
Sunday is mother's day, and today is Karen's birthday. I could not be prouder of her. Sydney and Ethan adore their momma. In the way they greet each day, with such joy and happiness, intelligence and adventure, curiosity and innocence, it's a testament to the mother they have in Karen.
We love you babe, Happy Birthday sweetheart.
What can I say? The past two years stretch out behind us in stark contrast to the years before. We all experience hurdles in life and it's fair to say we are defined by how we respond to those challenges. Karen has been through such a roller coaster of physical and mental highs and lows. Karen's strength has been evident throughout. In what has seemed at times to be a tremendous storm, Karen has been calm and steady. She has maintained a core of faith and always ensured we as a family have been cared for.
Sunday is mother's day, and today is Karen's birthday. I could not be prouder of her. Sydney and Ethan adore their momma. In the way they greet each day, with such joy and happiness, intelligence and adventure, curiosity and innocence, it's a testament to the mother they have in Karen.
We love you babe, Happy Birthday sweetheart.
Sunday, April 19, 2009
Home from Overlook
After a long day waiting for Doctors, Karen's home from Overlook and back with her family where she belongs.
Please spare a prayer or good wish tonight for Maggie Weaver and her husband Chris. Maggie was diagnosed with stage IV colon cancer (same as Karen) a few months before Karen. Chris and I connected through the websites soon after K was diagnosed in April of 2007. We've followed each other's journeys since then and the Weaver's have been of great support to Karen and I along the way.
Please stop by Maggie's website, read their story and offer whatever support you can.
Maggie's website: http://thumpers-hole.net
Please spare a prayer or good wish tonight for Maggie Weaver and her husband Chris. Maggie was diagnosed with stage IV colon cancer (same as Karen) a few months before Karen. Chris and I connected through the websites soon after K was diagnosed in April of 2007. We've followed each other's journeys since then and the Weaver's have been of great support to Karen and I along the way.
Please stop by Maggie's website, read their story and offer whatever support you can.
Maggie's website: http://thumpers-hole.net
Thursday, April 16, 2009
A Couple More Nights
Karen's doing well. She's been at Overlook hospital in Summit since Monday. She met with the Pain Management doctor today. She was planning on getting discharged today but that plan changed around 4PM. Luckily I had not told the kids and so they were not crushed.
She's going onto some additional pain medication, fairly heavy duty stuff. The scale as I know it goes Asprin...Vicodin...Morphine...Dilaudid with Fentanyl being the top.
Karen's been tipping this pain medication scale the last couple of days but once the Dilaudid wears off she's in trouble. So there's some new cocktail that they're starting today. Because of the strength they'll ease her up onto it over the next few days and possibly send her home by Saturday.
She'll be on this combo for about 1 month and will also manage her as she comes off of it. This'll be a tricky month as she can't drive during this time. We'll have to figure something out as I need to get back into the office.
Karen's awesome though and you can't keep her spirit down. Her Facebook status last night read "Mandelbaum, Mandelbaum, Mandelbaum".
She's going onto some additional pain medication, fairly heavy duty stuff. The scale as I know it goes Asprin...Vicodin...Morphine...Dilaudid with Fentanyl being the top.
Karen's been tipping this pain medication scale the last couple of days but once the Dilaudid wears off she's in trouble. So there's some new cocktail that they're starting today. Because of the strength they'll ease her up onto it over the next few days and possibly send her home by Saturday.
She'll be on this combo for about 1 month and will also manage her as she comes off of it. This'll be a tricky month as she can't drive during this time. We'll have to figure something out as I need to get back into the office.
Karen's awesome though and you can't keep her spirit down. Her Facebook status last night read "Mandelbaum, Mandelbaum, Mandelbaum".
Wednesday, April 15, 2009
3rd Hospital Stay Update
Karen has been in hospital since Monday. This is her third hospital stay (surgery, abscess and now this). She's in Overlook in Summit and they do a great job there.
The reason for this admission is the pain in her abdomen, near where her liver touches her lung on the right side. It's intense pain which she describes as a 10. They've been trying since Monday to diagnose the cause of the pain.
She had a CT scan on Monday and a 2nd yesterday. She's also had a chest X-Ray, an EKG and an ultra-sound on her legs. These were looking for a Pulmonary Embolism which is another name for a blood clot. It's been quite tense whilst this was going on as a PE could be very dangerous. At this time they've ruled that out.
She had blood taken on Monday and today is Wednesday. In 48 hours nothing has grown in the cultures and her white blood cells are normal. So infection has been ruled out.
Which leaves...air or fluid. The current theory is her liver is still regenerating and pushing itself back into place. There is a good bit of fluid in between her diaphragm and lungs. The liver pushing up puts this all under pressure. This makes breathing very painful.
If this is the cause she's been told she just has to ride it out.
I took the kids in for a surprise yesterday evening which gave her a lift. We thought she'd be home today but based on the pain situation that will not happen.
It's all very frustrating and overwhelming as we thought we'd be much further along by now. "Hold Fast" is a good motto, but it's not easy.
At this point she's comfortable with the hospital pain management and in good spirits but we're not sure when she'll be home.
The reason for this admission is the pain in her abdomen, near where her liver touches her lung on the right side. It's intense pain which she describes as a 10. They've been trying since Monday to diagnose the cause of the pain.
She had a CT scan on Monday and a 2nd yesterday. She's also had a chest X-Ray, an EKG and an ultra-sound on her legs. These were looking for a Pulmonary Embolism which is another name for a blood clot. It's been quite tense whilst this was going on as a PE could be very dangerous. At this time they've ruled that out.
She had blood taken on Monday and today is Wednesday. In 48 hours nothing has grown in the cultures and her white blood cells are normal. So infection has been ruled out.
Which leaves...air or fluid. The current theory is her liver is still regenerating and pushing itself back into place. There is a good bit of fluid in between her diaphragm and lungs. The liver pushing up puts this all under pressure. This makes breathing very painful.
If this is the cause she's been told she just has to ride it out.
I took the kids in for a surprise yesterday evening which gave her a lift. We thought she'd be home today but based on the pain situation that will not happen.
It's all very frustrating and overwhelming as we thought we'd be much further along by now. "Hold Fast" is a good motto, but it's not easy.
At this point she's comfortable with the hospital pain management and in good spirits but we're not sure when she'll be home.
Monday, April 13, 2009
Back to the Emergency Room
Karen's at the ER right now awaiting a CT scan. She had been extremely tired all week last week with difficulty eating, nausea and dry-heaving and throwing up.
We met with Moriarty last Friday (Good Friday) where they took some blood work. The CBC (complete blood count) showed Karen was badly anemic. Moriarty scheduled a transfusion for Saturday.
Saturday we went back to Overlook for the transfusion. She got two pints over about 6 hours, much longer than expected but they seemed to help. On Sunday she woke up with a bad pain in her right side, near where the previous drain had been placed. She said it felt like a muscle pain but a dose of fairly stout pain medication was only partially effective.
Early this morning (I think 4AM) (Sunday night) she woke up with severe pain in her side. From a scale of 1 through 10 it was a 10. Karen's got a pretty high tolerance for pain, a really really high tolerance truth be told. So a 10 for Karen is like a 20 for me. We decided to call her doctors and both calls encouraged her to go to the Emergency Room.
Which brings you all up to date. I'm working from home with the kids and will post more as I hear from her.
-======== UPDATE #1 =============-
Karen has been admitted into Overlook hospital and will remain there at least tonight. She has some fluid between her diaphragm and her lungs. If this requires a surgical procedure to be drained she'll be referred out to St. Barnabas tomorrow.
That's all I have at this point.
We met with Moriarty last Friday (Good Friday) where they took some blood work. The CBC (complete blood count) showed Karen was badly anemic. Moriarty scheduled a transfusion for Saturday.
Saturday we went back to Overlook for the transfusion. She got two pints over about 6 hours, much longer than expected but they seemed to help. On Sunday she woke up with a bad pain in her right side, near where the previous drain had been placed. She said it felt like a muscle pain but a dose of fairly stout pain medication was only partially effective.
Early this morning (I think 4AM) (Sunday night) she woke up with severe pain in her side. From a scale of 1 through 10 it was a 10. Karen's got a pretty high tolerance for pain, a really really high tolerance truth be told. So a 10 for Karen is like a 20 for me. We decided to call her doctors and both calls encouraged her to go to the Emergency Room.
Which brings you all up to date. I'm working from home with the kids and will post more as I hear from her.
-======== UPDATE #1 =============-
Karen has been admitted into Overlook hospital and will remain there at least tonight. She has some fluid between her diaphragm and her lungs. If this requires a surgical procedure to be drained she'll be referred out to St. Barnabas tomorrow.
That's all I have at this point.
Friday, March 27, 2009
Home (again)
Karen's doing well. She was discharged today and is home from hospital. She has a drain in ( a needle attached to a tube attached to a bag attached to her leg ) that'll remain until next Wednesday. Her appetite is good, no nausea and no vomiting which is a huge win. She'll have yet another CT scan next week along with a repeat chest X-Ray and a consultation with Chamberlain.
After a stressful week we're all breathing a sigh of relief to have her back home where she belongs.
After a stressful week we're all breathing a sigh of relief to have her back home where she belongs.
Wednesday, March 25, 2009
Re-Admitted to St Barnabas
Karen has been re-admitted to St. Barnabas due to an abscess on her liver. She's currently doing well.
It's been three weeks since surgery. In that time she has not had much of an appetite and her nausea has steadily increased. She spent much of the past week throwing up. This morning she had a scheduled CT scan and consultation with Dr Chamberlain (who has provided tremendous support to us in post-op).
The CT scan showed an almost fully regenerated cancer-free liver (a true medical miracle). However it also showed an abscess close to Karen's lung. As a result she was immediately admitted to hospital. This sucked as we weren't able to prep the kids and K didn't get to say goodbye to them. They're fine though.
Because the abscess was so close to her lungs, they didn't give anesthetic during the procedure as this would've impacted her breathing. So, lucky Karen had to suffer through the insertion of the drain "commando style". Very very painful.
Karen also has fluid in her lungs which is a minor cause for concern also. The team is monitoring this also.
In any case she's good now and will hopefully return home on Friday.
It's been three weeks since surgery. In that time she has not had much of an appetite and her nausea has steadily increased. She spent much of the past week throwing up. This morning she had a scheduled CT scan and consultation with Dr Chamberlain (who has provided tremendous support to us in post-op).
The CT scan showed an almost fully regenerated cancer-free liver (a true medical miracle). However it also showed an abscess close to Karen's lung. As a result she was immediately admitted to hospital. This sucked as we weren't able to prep the kids and K didn't get to say goodbye to them. They're fine though.
Because the abscess was so close to her lungs, they didn't give anesthetic during the procedure as this would've impacted her breathing. So, lucky Karen had to suffer through the insertion of the drain "commando style". Very very painful.
Karen also has fluid in her lungs which is a minor cause for concern also. The team is monitoring this also.
In any case she's good now and will hopefully return home on Friday.
Friday, March 13, 2009
Slow Recovery
Karen's home a couple of days now. We've been getting quite a few calls which tells me it's time to update the blog. She came home this week and the kids and I are very glad to have her back.
The situation is that Karen's on oral pain medication which works and doesn't work. She's still experiencing intense pain at times, other times it's tolerable. Moving around is very difficult and slow. She definitely can't be left in the house on her own. Imagine trying to move around without using your stomach muscles. It's hard to get comfortable for sleep with muscle cramps and the like although she's very tired. Her appetite is low with many things she just can't look at. She's getting by on sips and small bites whenever nausea and pain will allow. That's the bad news.
The good news is this is all to be expected and Chamberlain has assured us this is normal. As he put it, you might have one good day followed by three bad, don't get discouraged.
The kids are eager to jump on her and deliver their trademark crushing three-point-stance hugs which is just not an option right now.
Cynthia is here with us until Thursday which is a huge huge help and I will likely take some more time off until things improve.
The situation is that Karen's on oral pain medication which works and doesn't work. She's still experiencing intense pain at times, other times it's tolerable. Moving around is very difficult and slow. She definitely can't be left in the house on her own. Imagine trying to move around without using your stomach muscles. It's hard to get comfortable for sleep with muscle cramps and the like although she's very tired. Her appetite is low with many things she just can't look at. She's getting by on sips and small bites whenever nausea and pain will allow. That's the bad news.
The good news is this is all to be expected and Chamberlain has assured us this is normal. As he put it, you might have one good day followed by three bad, don't get discouraged.
The kids are eager to jump on her and deliver their trademark crushing three-point-stance hugs which is just not an option right now.
Cynthia is here with us until Thursday which is a huge huge help and I will likely take some more time off until things improve.
Thursday, March 5, 2009
Last Update For A While
Karen's doing a little better today. I did not get to visit but instead spent the day with the kids. They are also doing well, probably better than we expected. I'm typing this up beside them as they play in the tub. (the key to daddy daycare is multi-tasking).
I did speak to Karen a few times so far today. She has moved out of ICU and I even heard she maneuvered into a chair which is another good sign. It's hard for her to speak on the phone for anything more than a minute or two. My guess is she's comfortable but definitely still needs the meds and PCA. Chamberlain was also by to visit and seems to be pleased with progress.
I will visit again tomorrow as we juggle sitters and such. It definitely helps to have the hospital within 30mins ride. There won't be much to report so this'll be the last update for a while. Don't be alarmed, no news is good news.
Don McCloud and Adam Beldycki have scans coming up soon and our thoughts will be with them in the anxious moments leading up their results.
Thanks again to all for the continued support it really has helped and we are very appreciative.
I did speak to Karen a few times so far today. She has moved out of ICU and I even heard she maneuvered into a chair which is another good sign. It's hard for her to speak on the phone for anything more than a minute or two. My guess is she's comfortable but definitely still needs the meds and PCA. Chamberlain was also by to visit and seems to be pleased with progress.
I will visit again tomorrow as we juggle sitters and such. It definitely helps to have the hospital within 30mins ride. There won't be much to report so this'll be the last update for a while. Don't be alarmed, no news is good news.
Don McCloud and Adam Beldycki have scans coming up soon and our thoughts will be with them in the anxious moments leading up their results.
Thanks again to all for the continued support it really has helped and we are very appreciative.
Wednesday, March 4, 2009
Post-Op Recovery
Karen's doing so-so. She's stable. She spent a number of hours in recovery last night. "Recovery" is the room where you go after surgery and you get one-on-one nurse care. Usually folks spend an hour max in there and then go to the ICU room. She was transferred out at 2AM so 13 hours for her. She's in ICU now.
I spent a good deal of the afternoon with her then came home to put kids to bed. Her blood pressure was very low, 74/43 at one point so everyone was on edge. After I left they started giving her a blood transfusion and so far she's had 4 bags of plasma and 3 bags of red cells.
She's also been getting Saline, Magnesium, Calcium and other stuff. She has a lot of tubes still in. Until this morning she had a stomach-drain in which sucks the contents of your stomach out through your nose! K said that was horrible coming out. She still has an epidural, a mainline in her collar bone and a number of other things. Her mainline is covered in a crazy-glue type tape which in her drugged up state she tried to scratch off.
Her blood sugar was high yesterday (the liver helps control this) and so she's been getting insulin. Ironically they don't want her sugar going too low either so they've been giving her dextrose through IV. We've been waiting on a pain pump since this morning but pain is reasonably under control through the epidural and dilaudin. I am "escalating" this one.
It's very hard for her to get comfortable.
Aetna insurance called today. That's under control.
A number of folks asked me about visiting. It's not a great idea at the moment. K's in the Intensive Care Unit probably until tomorrow or Friday. You need to be buzzed in, patients are limited, can't bring food or flowers in with you and so on. In a couple days she'll be in a regular unit and that will be a different story.
So recovery is tough, but we knew that. Easy for me to say. This is when "Hold Fast" definitely applies. The first hurdle of surgery is over but we still have some tough road to travel. We'll get there.
I spent a good deal of the afternoon with her then came home to put kids to bed. Her blood pressure was very low, 74/43 at one point so everyone was on edge. After I left they started giving her a blood transfusion and so far she's had 4 bags of plasma and 3 bags of red cells.
She's also been getting Saline, Magnesium, Calcium and other stuff. She has a lot of tubes still in. Until this morning she had a stomach-drain in which sucks the contents of your stomach out through your nose! K said that was horrible coming out. She still has an epidural, a mainline in her collar bone and a number of other things. Her mainline is covered in a crazy-glue type tape which in her drugged up state she tried to scratch off.
Her blood sugar was high yesterday (the liver helps control this) and so she's been getting insulin. Ironically they don't want her sugar going too low either so they've been giving her dextrose through IV. We've been waiting on a pain pump since this morning but pain is reasonably under control through the epidural and dilaudin. I am "escalating" this one.
It's very hard for her to get comfortable.
Aetna insurance called today. That's under control.
A number of folks asked me about visiting. It's not a great idea at the moment. K's in the Intensive Care Unit probably until tomorrow or Friday. You need to be buzzed in, patients are limited, can't bring food or flowers in with you and so on. In a couple days she'll be in a regular unit and that will be a different story.
So recovery is tough, but we knew that. Easy for me to say. This is when "Hold Fast" definitely applies. The first hurdle of surgery is over but we still have some tough road to travel. We'll get there.
Tuesday, March 3, 2009
Surgery is Complete
Karen's doing great. I have not seen her yet. Surgery is over, she did great. I just met with Chamberlain. My head is spinning so here are some things he said "this is one of the biggest operations you can have", "everything went according to the plan", "she lost very little blood", "this is the first or second biggest operations he's ever done", "she has no visible cancer"!!! This guy has done an amazing amazing job and we are truly thankful to him and his team.
The risk now is infection so he did warn that visitors wash hands, and don't obviously come to the hospital if you have a cold/flu/bug of any kind.
She'll be in intensive care tonight, then a regular unit tomorrow.
I can go see her in about an hour. Teresa/Catherine I assume one of you will update mom and pop Shanahan. I need to go grab a bite. It DOES NOT get any better than this.
Much love.
The risk now is infection so he did warn that visitors wash hands, and don't obviously come to the hospital if you have a cold/flu/bug of any kind.
She'll be in intensive care tonight, then a regular unit tomorrow.
I can go see her in about an hour. Teresa/Catherine I assume one of you will update mom and pop Shanahan. I need to go grab a bite. It DOES NOT get any better than this.
Much love.
Amazing News...Surgery In Progress
Karen's doing GREAT. I am here in St Barnabas waiting room. It's 11AM and I just spoke to Doctor Chamberlain about 20mins ago. I had to take a few minutes to absorb what he told me before jumping online to share.
We got here at 5:30AM and were seen within 15mins. They prepped Karen with IVs and a couple of tests, all went smooth. By 7AM she was wheeled into the prep-area. She and I got to meet all the doctors, anesthesiologists and residents. She has a huge team and the all have the appearance of the utmost competence.
We had a few minutes together and Karen's spirits were really good going into the op. We were nervously laughing and joking and making fun of the residents as we waited.
At 7:25AM I had to leave her as she got her epidural.
At about 9:30AM Stephanie came out and said the laproscopy had gone well and no new disease had been found. That meant the rest of the operation was going ahead.
About 25mins ago Dr Chamberlain himself came out and briefed me. I'm still in shock. He has taken out a portion of her colon and some of her left-liver lobe and the big news is he thinks he can take out the right lobe TODAY!!!
He said "in two more hours she will have no more visible disease"!!! Unbelievable.
She's still in the operating room right now. It's a long procedure with about 2-3 more hours to go. Her gall bladder will be next and about 30 or so lymph nodes. Then the entire right lobe of her liver.
Everything's going great and I am light-headed with the news. I will try to write more later.
Much love to all and thanks again for all the kind words, Karen told me they really do lift her spirits.
We got here at 5:30AM and were seen within 15mins. They prepped Karen with IVs and a couple of tests, all went smooth. By 7AM she was wheeled into the prep-area. She and I got to meet all the doctors, anesthesiologists and residents. She has a huge team and the all have the appearance of the utmost competence.
We had a few minutes together and Karen's spirits were really good going into the op. We were nervously laughing and joking and making fun of the residents as we waited.
At 7:25AM I had to leave her as she got her epidural.
At about 9:30AM Stephanie came out and said the laproscopy had gone well and no new disease had been found. That meant the rest of the operation was going ahead.
About 25mins ago Dr Chamberlain himself came out and briefed me. I'm still in shock. He has taken out a portion of her colon and some of her left-liver lobe and the big news is he thinks he can take out the right lobe TODAY!!!
He said "in two more hours she will have no more visible disease"!!! Unbelievable.
She's still in the operating room right now. It's a long procedure with about 2-3 more hours to go. Her gall bladder will be next and about 30 or so lymph nodes. Then the entire right lobe of her liver.
Everything's going great and I am light-headed with the news. I will try to write more later.
Much love to all and thanks again for all the kind words, Karen told me they really do lift her spirits.
Monday, March 2, 2009
Checking into St Barnabas
Karen's doing well, hungry and working through the prep but in good spirits. All preparations are in place and so this is just a quick note around logistics.
St. Barnabas called this evening, they'd like us there tomorrow morning at 5:30AM. So we'll call that "sometime around" 5:30AM. Surgery starts at 7:30AM. I expect to see someone come out around 9AM to let me know what's going on. She should be done with surgery by 12:30PM.
There is Wifi in certain parts of the hospital and I will try to update the blog once we have some news.
Thanks for all the prayers and well wishes. They really do help.
St. Barnabas called this evening, they'd like us there tomorrow morning at 5:30AM. So we'll call that "sometime around" 5:30AM. Surgery starts at 7:30AM. I expect to see someone come out around 9AM to let me know what's going on. She should be done with surgery by 12:30PM.
There is Wifi in certain parts of the hospital and I will try to update the blog once we have some news.
Thanks for all the prayers and well wishes. They really do help.
Wednesday, February 25, 2009
Surgery Day's A Comin'
Well here we are again. We met with Dr. Ronald Chamberlain this past Monday the 23rd. It was basically a pre-op review and time for any last minute important question that you could possibly try to muster up in your brain. What is proposed to happen is this.
First Dr. C. will perform a diagnostic laproscopy to see what the deal is before the "first incision." Then in "general" what could happen are these three scenarios. These scenarios all have their own sub-scenarios and so on but I won't get into all that.
So the first one is surgery can't take place for any number of reasons, (too much scar tissue, too much tumor etc). If this is the case Dr. C. assured me he will still do radio frequency ablation (rfa) or microwave ablation http://www.ncbi.nlm.nih.gov/pubmed/16227498 to the tumors.
The second one is both sides of the liver are resected to remove said tumors, during the same surgery as well as part of the colon where the primary tumor originated. We want that crap gone!
The third is that the liver resection will take place in two stages, to, as I understand it, safeguard me from liver failure. But the colon resection would take place. With the two stage deal, one section of liver would be removed. I would recover 7-10 days in the hospital come back in 2-3 weeks and the other section would be removed. Dr. C. is sensing the latter scenario will take place. The end goal being to all of this is me have no evidence of disease or (let's be wild shall we...Cancer Free!!). Does all this make sense?
I am incredibly blessed, fortunate and grateful to be in this position. That is not lost on me. Just to have the word "option" in the life of someone with cancer is a golden ray of light. I am grateful to still be able to hear that word.
I really like Dr. Chamberlain. He is very thorough and articulate and obviously very intelligent and good at what he does. I don't know how I have been so lucky to have gotten such an incredible team.
Dr. Moriarty has been guiding and navigating me through these horrible, scary unknown waters and has never given up on me. I don't know what I would do, or where I would be without him or Kathy, Sonya, Kim, Chris, Gina, Miriam and Mylene. The woman, and nurses that care for me always.
And now I have this surgeon who seems to have his stuff together and is ready to go.
Since I met with Dr. C. on Monday I have been at a greater peace. I have been struggling in prayer. Jesus what do I ask for? I just want to be healed, completely healed and I know you can and are doing it. But then the thought sneaks in "well what if your supposed to stay sick, what if God's will is that you die from this?" This has been my internal spiritual struggle.
Then I was praying and felt so strongly Jesus saying to me "Karen what would be the opposite of what your asking me for?" I thought about it and said it would be unhappiness misery and death. Jesus said "I am not here for you to live like that" I am here for life and for joy." Okay so that was pretty heavy and while I was in the bathroom of course.
Then at the end of my meeting with Dr. Chamberlain I asked him if he prayed and he responded a very strong yes. He wrote down a scripture on an unopened gauze wrapper handed to me it was Jeremiah 29:11-14 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD, "and will bring you back from captivity.
Yeaaaaa I think I want this guy to be my surgeon.
I am fully at peace. Jesus has plans to GIVE me hope and a future and I'll take it.
Thank you all for everything. Every prayer, thought and kindness is deeply appreciated and as always humbling. There are so many people out there who needs our prayers. So lets keep praying for each other. We all need it.
Fran will be posting the happenings as best he can after surgery.
My sincerest love to all,
Karen
First Dr. C. will perform a diagnostic laproscopy to see what the deal is before the "first incision." Then in "general" what could happen are these three scenarios. These scenarios all have their own sub-scenarios and so on but I won't get into all that.
So the first one is surgery can't take place for any number of reasons, (too much scar tissue, too much tumor etc). If this is the case Dr. C. assured me he will still do radio frequency ablation (rfa) or microwave ablation http://www.ncbi.nlm.nih.gov/pubmed/16227498 to the tumors.
The second one is both sides of the liver are resected to remove said tumors, during the same surgery as well as part of the colon where the primary tumor originated. We want that crap gone!
The third is that the liver resection will take place in two stages, to, as I understand it, safeguard me from liver failure. But the colon resection would take place. With the two stage deal, one section of liver would be removed. I would recover 7-10 days in the hospital come back in 2-3 weeks and the other section would be removed. Dr. C. is sensing the latter scenario will take place. The end goal being to all of this is me have no evidence of disease or (let's be wild shall we...Cancer Free!!). Does all this make sense?
I am incredibly blessed, fortunate and grateful to be in this position. That is not lost on me. Just to have the word "option" in the life of someone with cancer is a golden ray of light. I am grateful to still be able to hear that word.
I really like Dr. Chamberlain. He is very thorough and articulate and obviously very intelligent and good at what he does. I don't know how I have been so lucky to have gotten such an incredible team.
Dr. Moriarty has been guiding and navigating me through these horrible, scary unknown waters and has never given up on me. I don't know what I would do, or where I would be without him or Kathy, Sonya, Kim, Chris, Gina, Miriam and Mylene. The woman, and nurses that care for me always.
And now I have this surgeon who seems to have his stuff together and is ready to go.
Since I met with Dr. C. on Monday I have been at a greater peace. I have been struggling in prayer. Jesus what do I ask for? I just want to be healed, completely healed and I know you can and are doing it. But then the thought sneaks in "well what if your supposed to stay sick, what if God's will is that you die from this?" This has been my internal spiritual struggle.
Then I was praying and felt so strongly Jesus saying to me "Karen what would be the opposite of what your asking me for?" I thought about it and said it would be unhappiness misery and death. Jesus said "I am not here for you to live like that" I am here for life and for joy." Okay so that was pretty heavy and while I was in the bathroom of course.
Then at the end of my meeting with Dr. Chamberlain I asked him if he prayed and he responded a very strong yes. He wrote down a scripture on an unopened gauze wrapper handed to me it was Jeremiah 29:11-14 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD, "and will bring you back from captivity.
Yeaaaaa I think I want this guy to be my surgeon.
I am fully at peace. Jesus has plans to GIVE me hope and a future and I'll take it.
Thank you all for everything. Every prayer, thought and kindness is deeply appreciated and as always humbling. There are so many people out there who needs our prayers. So lets keep praying for each other. We all need it.
Fran will be posting the happenings as best he can after surgery.
My sincerest love to all,
Karen
Friday, February 20, 2009
4th Colonoscopy
Karen's doing better. The malaise from the shingles has cleared up. Tomorrow (Friday) is colonoscopy day which makes today prep day, not fun. Karen's 4th colonoscopy in 2 years.
Sydney turned 5 today also and she is just a doll. No other word for it. We'll go out to dinner as a family after K's procedure and Sydney gets to pick the place.
Sunday is Syd's party which makes Saturday cake baking day.
Monday is Chamberlain and pre-admin testing all day at St. Barnabus.
Life is good.
Sydney turned 5 today also and she is just a doll. No other word for it. We'll go out to dinner as a family after K's procedure and Sydney gets to pick the place.
Sunday is Syd's party which makes Saturday cake baking day.
Monday is Chamberlain and pre-admin testing all day at St. Barnabus.
Life is good.
Saturday, February 14, 2009
Karen has Shingles
Karen has shingles. She's running a mild fever the last two weeks and most recently this has amped up. She's in bed resting with a confirmed case of shingles. I won't go into the details but think painful chicken-pox.
Shingles is normally not expected until you're over 60. Then again colon cancer is not expected until you're over 50. Karen'll be 34 this year! Go figure. Google says this is fairly common in long-term chemo patients. I myself have a mild cold so she probably caught some of that too.
It's a virus so she's on anti-viral medicine. We're hoping this will clear up in time for surgery (March 3rd) and not interfere with the preparation. With a colonoscopy coming up on Friday 20th and Sydney's birthday on the 19th (she'll be 5) we already have a packed schedule.
Timing could be better but like everything else we'll deal with it.
Shingles is normally not expected until you're over 60. Then again colon cancer is not expected until you're over 50. Karen'll be 34 this year! Go figure. Google says this is fairly common in long-term chemo patients. I myself have a mild cold so she probably caught some of that too.
It's a virus so she's on anti-viral medicine. We're hoping this will clear up in time for surgery (March 3rd) and not interfere with the preparation. With a colonoscopy coming up on Friday 20th and Sydney's birthday on the 19th (she'll be 5) we already have a packed schedule.
Timing could be better but like everything else we'll deal with it.
Monday, February 2, 2009
Protein Folding Continues
Karen's doing well. Getting stronger and prepping for surgery.
I wanted to post a very quick update on our Protein Folding team which is making great strides in the area of Cancer Research.
As you can see from the team stats page, we are ranked 6519th out of 152,887 teams worldwide. Not bad!
I've written about this before and here's How to Help.
If you're interested in the mechanics of protein folding and how it actually works, here's some stuff I've figured out along the way: Parts 1, 2 and 3
I know this isn't a very interesting update but it's important and does help the field of research.
I wanted to post a very quick update on our Protein Folding team which is making great strides in the area of Cancer Research.
As you can see from the team stats page, we are ranked 6519th out of 152,887 teams worldwide. Not bad!
| Report generated on | 18:56:54 February 02, 2009 |
| Date of last work unit | 2009-02-01 18:23:19 |
| Active CPUs within 50 days | 7 |
| Team Id | 144824 |
| Grand Score | 169488 (certificate) |
| Work Unit Count | 203 (certificate) |
| Team Ranking (incl. aggregate) | 6519 of 152887 |
I've written about this before and here's How to Help.
If you're interested in the mechanics of protein folding and how it actually works, here's some stuff I've figured out along the way: Parts 1, 2 and 3
I know this isn't a very interesting update but it's important and does help the field of research.
Wednesday, January 14, 2009
Cleared for Surgery - March 3rd 2009
Karen's doing great. We met with Dr Moriarty on Monday, and Dr Chamberlain today. They've spoken and are in agreement that based on Karen's most recent PET scan, she's cleared for surgery.
They are hard men to read but I get the impression they're both pretty amazed at how well Karen has done. Her tumors are still active but barely and perfect for resection. After ~18 months of uphill emotional and physical battle, Karen's gone from terminal cancer to having a possible curative surgery.
Surgery has been tentatively scheduled for the 3rd of March at St Barnabus [LINK] in Livingston. The good Doctor Chamberlain was named in the Top Docs 2008 list [LINK] so that's encouraging.
Surgery will not be easy, as we know. The idea is to open up K's existing scar and possibly elongate it. There will likely be scar tissue from the old surgery which will complicate the procedure. The plan is to remove Karen's right liver lobe and either cut out or ablate the tumors on the left lobe. Her gall bladder will come out and possible 10-12 inches of colon, along with lymph nodes and other sundry items. They'll do an intra-operative ultrasound to be sure every thing's removed and then sew her back up.
There's also a possibility that the procedure will need to be done in 2 surgeries instead of one. The doctor won't know until he gets in there. In the event of two surgeries, the first would actually tie off the right lobe but not remove it. This will trigger growth in the left lobe. Karen would come home and after 2-3 weeks the left lobe would be big enough. They'd go in and remove the right, leaving the larger left. Make sense?
Assuming one surgery, Karen'll be in hospital between 7-14 days.
Between now and the 3rd will be another colonoscopy, one more Erbitux, some pre-admissions tests, Chamberlain and Moriarty visits and likely some pre-operative prep.
The surgery is not without risk, both doctors have said they would not attempt this on a sixty year old woman, but we know what to expect and are ready for whatever comes.
"No Evidence of Disease" does not mean "no disease", it just means no visible tumors. There's also the chance of a recurrence after surgery but Karen's been off chemo since July 2008 with no new tumors appearing so this is a good indicator. If there were tumor cells ready to grow they have had time to do so.
The goal is to have Karen leave the operating room, visibly cancer free. As doctor Chamberlain put it, that would indeed be a true miracle. No one has worked harder for it than Karen.
They are hard men to read but I get the impression they're both pretty amazed at how well Karen has done. Her tumors are still active but barely and perfect for resection. After ~18 months of uphill emotional and physical battle, Karen's gone from terminal cancer to having a possible curative surgery.
Surgery has been tentatively scheduled for the 3rd of March at St Barnabus [LINK] in Livingston. The good Doctor Chamberlain was named in the Top Docs 2008 list [LINK] so that's encouraging.
Surgery will not be easy, as we know. The idea is to open up K's existing scar and possibly elongate it. There will likely be scar tissue from the old surgery which will complicate the procedure. The plan is to remove Karen's right liver lobe and either cut out or ablate the tumors on the left lobe. Her gall bladder will come out and possible 10-12 inches of colon, along with lymph nodes and other sundry items. They'll do an intra-operative ultrasound to be sure every thing's removed and then sew her back up.
There's also a possibility that the procedure will need to be done in 2 surgeries instead of one. The doctor won't know until he gets in there. In the event of two surgeries, the first would actually tie off the right lobe but not remove it. This will trigger growth in the left lobe. Karen would come home and after 2-3 weeks the left lobe would be big enough. They'd go in and remove the right, leaving the larger left. Make sense?
Assuming one surgery, Karen'll be in hospital between 7-14 days.
Between now and the 3rd will be another colonoscopy, one more Erbitux, some pre-admissions tests, Chamberlain and Moriarty visits and likely some pre-operative prep.
The surgery is not without risk, both doctors have said they would not attempt this on a sixty year old woman, but we know what to expect and are ready for whatever comes.
"No Evidence of Disease" does not mean "no disease", it just means no visible tumors. There's also the chance of a recurrence after surgery but Karen's been off chemo since July 2008 with no new tumors appearing so this is a good indicator. If there were tumor cells ready to grow they have had time to do so.
The goal is to have Karen leave the operating room, visibly cancer free. As doctor Chamberlain put it, that would indeed be a true miracle. No one has worked harder for it than Karen.
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