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Kevin
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Friday, December 04, 2009
Wednesday, December 02, 2009
I Got Me Some Tattoos
No, no Harley tattoos. No Air Force tattoos. None that say "Mom", or "I heart Roni".
Just 5 simple dots that show the radiologists where to place me when it's time for radiation.
My radiation treatments start Jan 5th, and my last one will be Feb 8th. I'll be having them 5 days a week, for 5 weeks.
And the bad news is, the Doc tells me it's not going to make me bigger and stronger like in the movies from the 50s and 60s. Bummer.
Just 5 simple dots that show the radiologists where to place me when it's time for radiation.
My radiation treatments start Jan 5th, and my last one will be Feb 8th. I'll be having them 5 days a week, for 5 weeks.
And the bad news is, the Doc tells me it's not going to make me bigger and stronger like in the movies from the 50s and 60s. Bummer.
Saturday, November 21, 2009
Radiation, Chemo and Another Surgery
Just a quick update. I have talked to my oncologist and a radiation oncologist, and have decided to go for the radiation and chemo treatment, followed by another surgery.
Barring a miracle, this is really my only shot to beat this once and for all.
I go in for a planning session on Dec 1st. I'll get a CT scan, sans contrast (yippee), and tattooed where I am going to get hit with the radiation.
The treatments will be 5 days a week, for 5 weeks. As we are going to OR for a week to see my family during the Christmas holidays, I won't be able to start the radiation until we get back. So my first day of radiation will be Jan 5th (the doctor who will be doing the radiation does not work on Mondays). This means I should be finished the first week of Feb.
I will also be taking Xeloda, an oral form of 5FU chemo. I have taken this before and it is fairly tolerable. This time I will only be taking it the days I get radiation, so that might make it a bit easier. Other times I took it for 2 weeks straight, then had a week off. Oh, and this time I will also be taking a lower dose.
I am hoping that 6 to 7 weeks after the radiation, providing it did what we are hoping it does, I will go in for what we are praying will be my 5th and last surgery to remove the tumors.
One thing I learned from watching movies made in the 50s and 60s, is that getting hit with radiation can make you bigger and stronger. I'm hoping that's the case with me. :-)
As things proceed, we'll keep you updated.
Kevin The Roentgenizer
Barring a miracle, this is really my only shot to beat this once and for all.
I go in for a planning session on Dec 1st. I'll get a CT scan, sans contrast (yippee), and tattooed where I am going to get hit with the radiation.
The treatments will be 5 days a week, for 5 weeks. As we are going to OR for a week to see my family during the Christmas holidays, I won't be able to start the radiation until we get back. So my first day of radiation will be Jan 5th (the doctor who will be doing the radiation does not work on Mondays). This means I should be finished the first week of Feb.
I will also be taking Xeloda, an oral form of 5FU chemo. I have taken this before and it is fairly tolerable. This time I will only be taking it the days I get radiation, so that might make it a bit easier. Other times I took it for 2 weeks straight, then had a week off. Oh, and this time I will also be taking a lower dose.
I am hoping that 6 to 7 weeks after the radiation, providing it did what we are hoping it does, I will go in for what we are praying will be my 5th and last surgery to remove the tumors.
One thing I learned from watching movies made in the 50s and 60s, is that getting hit with radiation can make you bigger and stronger. I'm hoping that's the case with me. :-)
As things proceed, we'll keep you updated.
Kevin The Roentgenizer
Thursday, November 05, 2009
I'm tired of being 1 in a Million
So it's not enough that I have to have a rare form of cancer, but I also have to have a case that does not act like it should. Part of that is good, part of that isn't.
Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.
The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.
During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.
So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.
Yes, that means another surgery. :-(
Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.
Here are the choices.
1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.
2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.
The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.
3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.
Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.
It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.
Your prayers for guidance and wisdom are greatly appreciated.
Kevin
Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.
The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.
During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.
So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.
Yes, that means another surgery. :-(
Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.
Here are the choices.
1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.
2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.
The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.
3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.
Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.
It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.
Your prayers for guidance and wisdom are greatly appreciated.
Kevin
Friday, October 09, 2009
Six Years Ago Today...
On Oct 9th, 2003, I was taken into the OR at St. Lukes Roosevelt Hospital for emergency surgery. 6 hours later, I was in ICU without an appendix, with an ileostomy and being pumped full of antibiotics.
The tumor on my appendix had burst, perforating my bowels, which made me septic. I think there were some in the hospital that thought I would never leave alive.
Five days later we were told I had cancer. Six days after that, I left the hospital to finally go home.
And the rest, as they say, is history.
The tumor on my appendix had burst, perforating my bowels, which made me septic. I think there were some in the hospital that thought I would never leave alive.
Five days later we were told I had cancer. Six days after that, I left the hospital to finally go home.
And the rest, as they say, is history.
Monday, September 28, 2009
Appt. with Dr. Loggie
The time has come up pretty fast. It has been about two months since my surgery, which means it is time to make an appointment for a follow-up with Dr. Loggie.
We will be going to Omaha Tuesday, Nov. 3rd, then will get a CT scan first thing Wednesday morning (Nov 4th), then see Dr. Loggie directly after. Hopefully he will have some words of wisdom concerning next steps of treatment.
Actually what we are praying for is that he will look at the CT scan and say, "Hmmm... this is weird, there's nothing there."
We will be going to Omaha Tuesday, Nov. 3rd, then will get a CT scan first thing Wednesday morning (Nov 4th), then see Dr. Loggie directly after. Hopefully he will have some words of wisdom concerning next steps of treatment.
Actually what we are praying for is that he will look at the CT scan and say, "Hmmm... this is weird, there's nothing there."
Elke
Yep, we got a dog.Her name is Elke (fem form of Elkanah, which means "purchased by G-d"). She is a poodle mix (not sure what else, perhaps Bishon).
She is a rescue and was neglected.
For the most part, she is a great dog. Still a few issues with getting too excited, but we're working on that.
She has been good for me to help me get out of the apartment and go for walks, and to help me get out of this funk I have been in. Recovering from surgery, not having a job, etc., isn't necessarily good for the soul, but having a dog is.
And I'm starting to learn some lessons about being calm when things aren't going my way (i.e. when Elke wants to go one way, and I want her to go another). I know that getting angry with her does no good. Yelling at her does no good (I'm pretty sure she doesn't understand 99% of what I say). Being calm, and being the pack leader is what is needed (hat tip to Ceaser).
I'll be sure to post other lessons I learn as time goes on. Till then, this is Kevin, Roni and Elke siging off...
Questions on Yom Kippur 5770
For the last couple of years I have been asking G-d the same questions. Why did I have to get cancer? Why me? Those questions can also be translated to "What did I do to deserve this?"
Intellectually I know the answers, yet I still continued to ask. The answer is the same for all these types of questions, and it is the same answer all the time. "It just is."
I didn't do anything to deserve cancer. It just happened. There is no great cosmic conspiracy. This is not some form of godly punishment. It's just that we live in an imperfect world. Good things happen to bad people, and bad things happen to good people.
So today, on Yom Kippur, it is time to change the questions. Instead of why did this happen to me, I want to start asking, "What can I do with my situation to help others?" "How can I take a crappy situation and turn it to good?"
My prayer for today, and going forward is, G-d help me to ask the right questions. The questions who answers have the ability to change lives. Mine and others.
Amen.
Intellectually I know the answers, yet I still continued to ask. The answer is the same for all these types of questions, and it is the same answer all the time. "It just is."
I didn't do anything to deserve cancer. It just happened. There is no great cosmic conspiracy. This is not some form of godly punishment. It's just that we live in an imperfect world. Good things happen to bad people, and bad things happen to good people.
So today, on Yom Kippur, it is time to change the questions. Instead of why did this happen to me, I want to start asking, "What can I do with my situation to help others?" "How can I take a crappy situation and turn it to good?"
My prayer for today, and going forward is, G-d help me to ask the right questions. The questions who answers have the ability to change lives. Mine and others.
Amen.
Monday, August 24, 2009
Some Good News
Just a quick note to let everyone know some good news.
I spoke to my oncologist today to get my results from the tumor markers he had done about a week ago.
Just to let you all know, I have two main markers taken, CEA and CA 19-9. The normal range for CEA is between 0 - 2.5. The normal range for CA 19-9 is 0 - 35.
Right before my surgery, my CEA was 48 and the CA 19-9 was over 200.
After having my spleen removed, my CEA is now 5.3 and CA 19-9 is 42!! Both still slightly high, but this is the lowest then have been (without any chemo) in about 2 years.
Seems like the spleen was a big part of the problem.
As for my recovery, I'm getting a little better every day. Still not sure what the next steps will be. My oncologist has reached out to another medical oncologist and to Dr. Loggie for their opinions. When I know what is going to happen next, I'll let you all know.
For now, I'll let my body continue to heal, work on getting my strength back, and worry about chemo later.
Kevin
I spoke to my oncologist today to get my results from the tumor markers he had done about a week ago.
Just to let you all know, I have two main markers taken, CEA and CA 19-9. The normal range for CEA is between 0 - 2.5. The normal range for CA 19-9 is 0 - 35.
Right before my surgery, my CEA was 48 and the CA 19-9 was over 200.
After having my spleen removed, my CEA is now 5.3 and CA 19-9 is 42!! Both still slightly high, but this is the lowest then have been (without any chemo) in about 2 years.
Seems like the spleen was a big part of the problem.
As for my recovery, I'm getting a little better every day. Still not sure what the next steps will be. My oncologist has reached out to another medical oncologist and to Dr. Loggie for their opinions. When I know what is going to happen next, I'll let you all know.
For now, I'll let my body continue to heal, work on getting my strength back, and worry about chemo later.
Kevin
Tuesday, August 11, 2009
Post Op - Day 14
Two weeks ago, I was on the operating table having my spleen removed.
One week ago, we left Omaha, NE to come home.
As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.
The past week has been one of resting, healing and generally taking things easy.
Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.
So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.
Until then, I continue to take things easy, and continue to let my body heal from the surgery.
I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.
With love and gratitude,
Kevin
One week ago, we left Omaha, NE to come home.
As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.
The past week has been one of resting, healing and generally taking things easy.
Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.
So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.
Until then, I continue to take things easy, and continue to let my body heal from the surgery.
I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.
With love and gratitude,
Kevin
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