Being the geek that I am, I am trying out the BlogPress app for my iPhone to post to my blog.
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
Monday, August 03, 2009
Doctor's Visit Update, and We Get to Go Home
Well, after another restless night of sleeping for a couple of hours, waking in pain, going to the bathroom, taking an oxycodone, then going back to sleep to start the process all over again, I finally got out of bed about 8 AM.
Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.
About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.
We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.
Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.
The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.
The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.
So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.
Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.
About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.
We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.
Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.
The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.
The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.
So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.
Saturday, August 01, 2009
Getting Out of Hospital Today!
I'm so proud of Kevin. He summoned his "inner soldier", pushed himself all day yesterday and made huge improvements! He did the long hall walk 5 times yesterday and since last evening has been getting himself in and out of bed on his own and has been sitting up in a chair for most of his awake hours, which are increasing along with much greater alertness. I'll know when he's really beginning to feel like himself again when he asks me to hand over the laptop. I think it won't be long now.
They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)
We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.
Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!
Happy to be the bearer of good news,
Roni
They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)
We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.
Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!
Happy to be the bearer of good news,
Roni
Friday, July 31, 2009
Over the Hump!
Looks like Kevin will be discharged from the hospital tomorrow. I'm not sure how long before we get to fly home, but it will be good to get out of here. It's a whole lot easier to get rest in a hotel than in a hospital. And hotels tend to smell better.
I can see Kevin getting stronger by the minute. Everything still exhausts him, but he's able to do more all the time. He went for three and a half walks yesterday. The half is because one walk got aborted after a few feet due to his IV pump battery dying, forcing us to return to the room for AC power. But Kevin insists on counting it! And he should; he still got himself out of and back into bed, and that’s the hardest part. Today he went for two pretty long walks already, with one more planned before bedtime.
His vital signs are good. He was taken off all IV completely until this afternoon, when they hooked him up temporarily to get a few more fluids into him. I imagine they’ll take the port out today or first thing tomorrow, and then he’ll be completely free of tubes.
He was graduated to solids foods this morning, and his digestive track is working again and good to go. (He he)
As always, thanks for all the emails and comments. I have a slew to read to him when he wakes up from his nap. And, we just got a mail delivery!! How exciting is that?!!
Roni
I can see Kevin getting stronger by the minute. Everything still exhausts him, but he's able to do more all the time. He went for three and a half walks yesterday. The half is because one walk got aborted after a few feet due to his IV pump battery dying, forcing us to return to the room for AC power. But Kevin insists on counting it! And he should; he still got himself out of and back into bed, and that’s the hardest part. Today he went for two pretty long walks already, with one more planned before bedtime.
His vital signs are good. He was taken off all IV completely until this afternoon, when they hooked him up temporarily to get a few more fluids into him. I imagine they’ll take the port out today or first thing tomorrow, and then he’ll be completely free of tubes.
He was graduated to solids foods this morning, and his digestive track is working again and good to go. (He he)
As always, thanks for all the emails and comments. I have a slew to read to him when he wakes up from his nap. And, we just got a mail delivery!! How exciting is that?!!
Roni
Thursday, July 30, 2009
The Road to Recovery
Since last night there have been some ups and downs, but Kevin's making progress overall. Our good friend who's an ICU nurse assures me that these ups and downs are normal, but that Kevin’s blood oxygen level needs to improve somewhat in order for him to be safely and steadily on that road to recovery. (Thank you Scott so much for the reassuring phone call and wise words of advice!)
In addition to blood oxygen levels, doctors had some concerns about the heart rate last night, which required some medication, but the heart rate has stabilized within normal range since early hours this morning. (Thanks Rabbi for the wee hours phone call/prayer!) Since last night his blood oxygen level has fluctuated between 88 and 92 – it needs to stabilize in the mid 90s. Kevin’s doing his best to work his lungs -- two walks so far today and hourly workouts with the incentive spirometer (or as I used to call it – the breathing tube thingie). Scott explained that it’s much better for the recovery process if Kevin can improve the level on his own. If he has to rely on an oxygen mask, it will set him back. Thankfully, even though improvement is still needed, so for far he’s been able to bring the level up enough to avoid the mask.
In terms of how he's feeling, his throat is feeling much better, especially since starting on a liquid diet at lunch. Thankfully his incision area is not giving him much pain and he's not having to use too much of the pain meds. In terms of how he feels overall, that goes up and down with the blood oxygen level. Mostly he’d sleep constantly if he could and feels really wiped out when we wake him for exercise.
He’s really pushed himself today to try and get past what can be a vicious cycle of: not feeling well; so staying in bed and just sleeping; so not getting enough oxygen; so not feeling well… He took two walks down the hall, has worked hard on hourly breathing exercises, sat up in a chair to eat his lunch – popsicle, some Jell-O and tea -- took a chair “bath” and changed his gown. To use a military analogy, I think today was something of a “forced march” day.
Please do continue to keep him in prayer for:
- his blood oxygen level to increase and stabilize
- his heart rate to continue to be normal
- his digestive system to continue to “wake up” so he can progress to a soft diet tomorrow
- his spirits. This is the 4th time he’s had to endure this recovery process, and I can see he’s feeling so DONE with it all. It’s not fair, it sucks big time, but he can’t give in to the emotions that go along with that; he has to keep fighting. And that’s what he’s doing. I’m very proud of him and grateful.
Discharge update: Doctor thought this morning that Kevin still may be on track for release tomorrow, but if his blood oxygen level does not reach the mid-90s and stabilize, that won't happen. We’ll see. It could turn around quickly.
Support our troops: One more military analogy – nothing helps a soldier’s morale like a letter from home. Keep those emails and blog and facebook comments coming. Just one or two lines are all it takes to get a smile out of him.
I’m not sure what time tomorrow I’ll post again. If I have either GREAT news or significant concerns, I’ll post ASAP. Otherwise, assume that no news is good news.
Thanks for reading, caring and praying,
Roni
In addition to blood oxygen levels, doctors had some concerns about the heart rate last night, which required some medication, but the heart rate has stabilized within normal range since early hours this morning. (Thanks Rabbi for the wee hours phone call/prayer!) Since last night his blood oxygen level has fluctuated between 88 and 92 – it needs to stabilize in the mid 90s. Kevin’s doing his best to work his lungs -- two walks so far today and hourly workouts with the incentive spirometer (or as I used to call it – the breathing tube thingie). Scott explained that it’s much better for the recovery process if Kevin can improve the level on his own. If he has to rely on an oxygen mask, it will set him back. Thankfully, even though improvement is still needed, so for far he’s been able to bring the level up enough to avoid the mask.
In terms of how he's feeling, his throat is feeling much better, especially since starting on a liquid diet at lunch. Thankfully his incision area is not giving him much pain and he's not having to use too much of the pain meds. In terms of how he feels overall, that goes up and down with the blood oxygen level. Mostly he’d sleep constantly if he could and feels really wiped out when we wake him for exercise.
He’s really pushed himself today to try and get past what can be a vicious cycle of: not feeling well; so staying in bed and just sleeping; so not getting enough oxygen; so not feeling well… He took two walks down the hall, has worked hard on hourly breathing exercises, sat up in a chair to eat his lunch – popsicle, some Jell-O and tea -- took a chair “bath” and changed his gown. To use a military analogy, I think today was something of a “forced march” day.
Please do continue to keep him in prayer for:
- his blood oxygen level to increase and stabilize
- his heart rate to continue to be normal
- his digestive system to continue to “wake up” so he can progress to a soft diet tomorrow
- his spirits. This is the 4th time he’s had to endure this recovery process, and I can see he’s feeling so DONE with it all. It’s not fair, it sucks big time, but he can’t give in to the emotions that go along with that; he has to keep fighting. And that’s what he’s doing. I’m very proud of him and grateful.
Discharge update: Doctor thought this morning that Kevin still may be on track for release tomorrow, but if his blood oxygen level does not reach the mid-90s and stabilize, that won't happen. We’ll see. It could turn around quickly.
Support our troops: One more military analogy – nothing helps a soldier’s morale like a letter from home. Keep those emails and blog and facebook comments coming. Just one or two lines are all it takes to get a smile out of him.
I’m not sure what time tomorrow I’ll post again. If I have either GREAT news or significant concerns, I’ll post ASAP. Otherwise, assume that no news is good news.
Thanks for reading, caring and praying,
Roni
Wednesday, July 29, 2009
Post Op Day 1 -- NG Tube Already Out!!
They pulled the NG (naso-gastric) tube out at about 10:00 this morning. Yippeeeeeee!! That thing has always been the worst part of recovery for Kevin. Gives him a horrible sore throat, which he can't sooth with liquid or lozenges since he's not allowed anything in his stomach yet.
They discontinued the shots they were giving him for pain and hooked him up with an IV that dispenses happy-feel-good dope at the push of a button.
Saw Dr. L on rounds. I mistook what he told me yesterday about the tumor markers. They won't tell us anything useful for a couple of weeks.
Kevin didn't sleep much last night and up until now, hasn't been able to rest this morning with all the activity -- early rounds, regular rounds, hooking up pain meds, antibiotics, fluids, electrolytes, etc. to the central line they put in during surgery and taking out the IV lines in his arms. But the last of the "fussing" ended about 25 minutes ago. Within 10 minutes of the last nurse leaving, Kevin was already lightly snoring -- a sound that makes me happy.
He's started reading the emails and facebook comments already and is grateful for all the expressions of love and friendship. I am so blown away by all the special people in our lives, especially you fellow PMPers -- your words of support have bouyed us up so much.
And thanks to my Beth El sistas who have called even though I couldn't really talk. Just hearing the voices makes it less lonely.
The love and support of our family and Rabbi Bruce are priceless.
When Kevin wakes up, it'll be time to get him on his feet and take a little walk; literally taking steps to getting him out of here.
That's the news for today. Keep those prayers and emails coming. Just don't mention food. I think he's dreaming of pizza. :-)
Roni
Tuesday, July 28, 2009
Surgery over -- Prognosis is good, but still some uncertainty ahead
Surgery was over at about 2:20 p.m. CT, and I spoke to the doc shortly after.
Kev is recovering so well that he did not have to go to ICU following surgery, as we all expected. I am writing from his room, trying to get this out before I am lulled to sleep by his soft snoring and the hum of the IV machine. He is experiencing minimal pain; it's being managed very well by a non-opiate drug -- he'll get his strength back sooner without opiates.
Out With the Spleen
It took five hours to get through the significant adhesions before they could even begin to remove the spleen.
Doc said it was enormous, making him sick. Depending on how long it’s been that big (remember, CT scans lie), it might have had something to do with how hard the chemo was on him.
Once the spleen was out, the platelet count went back up. Yay!
No Other Tumor Removed
Despite the encouraging report I received during the surgery, in the end the mesentery tumor was not removed. Too many adhesions, plus problems with blood supply it attached itself to would have resulted too much bleeding and too much small intestine coming out with it if removed. The loss of small intestine would have resulted in greatly diminished quality of life.
Though we would have preferred it out, Dr. L said after taking a thorough look at it, he does not think that the mesentery tumor poses a threat (read bowel obstructions) in the foreseeable future, if ever. Sigh of relief. We'll know more in the coming days.
Follow Up Chemo?
We will get results of pathology report next week, probably Wed. In the mean time, Dr. L. expects that we’ll see the tumor markers drop significantly in the next couple of days as he thinks it likely that the spleen activity was the sole cause of the rising markers.
Based on what he saw, Dr. L. thinks that the tumor was not only on the outside of the spleen, but also invaded it. If it turns out that there was disease inside the organ, I’m guessing that may mean more chemo to insure against systemic spread, but haven’t had that conversation with doctor yet. We’ll cross that bridge when we get to it. What Dr. L. did say was that if Kevin does have chemo in the future, he thinks that having that diseased spleen out will help Kevin tolerate it much better.
Oh No, You Need a Spleen…
Once when Kevin was telling someone about all the innards he had removed during his Feb. 2004 surgery they replied that they didn’t realize one didn’t need those things, to which Kevin replied, “Oh no, you need them, you can just live without them.”
The spleen serves to ward off big, nasty viruses (like swine flu); without a spleen one is more susceptible to those bugs and things like pancreatitis. Kevin will be getting some major antibiotic doses and will always have to keep up with vaccines and flu shots.
Getting Sprung and Coming Home
Dr. Loggie says he wants to shoot for getting Kevin discharged from the hospital on Friday! Woo hoo! We’d then check into a local hotel until he’s had some more post op follow up and is healthy enough to fly. If all goes well, we should be home in less than two weeks. I’m not sure about total recovery time. Another bridge we can wait to cross.
Thanks!!
For the emails and facebook messages. Words of encouragement are not just a gesture, they really are encouraging. Thanks for taking time out of your day to send them. I'm sorry I haven't been able to respond to most, but I've appreciated every one and saved all for Kevin to read when he's up to it.
And a special thanks to my new PMP Awareness friend, Rosemary S. who was in Omaha tending to her nephew who had recent surgery with Dr. Loggie for PMP. Before driving home to Chicago today, she ran around to local stores to find a robe for Kevin, bought me cereal and water, and brought me an air mattress! The visit and the hug were very welcome, too. Please pray for Tom, her nephew (in late 20s) who was only diagnosed in June and who, like Kevin, will be living with inoperable tumor. He has a lot to process as he recovers. And, pray that the disease stays in remission.
Okay. You’re now about as informed as I am. Time for a nap!!!
Love and gratitude for you,
Roni
Kev is recovering so well that he did not have to go to ICU following surgery, as we all expected. I am writing from his room, trying to get this out before I am lulled to sleep by his soft snoring and the hum of the IV machine. He is experiencing minimal pain; it's being managed very well by a non-opiate drug -- he'll get his strength back sooner without opiates.
Out With the Spleen
It took five hours to get through the significant adhesions before they could even begin to remove the spleen.
Doc said it was enormous, making him sick. Depending on how long it’s been that big (remember, CT scans lie), it might have had something to do with how hard the chemo was on him.
Once the spleen was out, the platelet count went back up. Yay!
No Other Tumor Removed
Despite the encouraging report I received during the surgery, in the end the mesentery tumor was not removed. Too many adhesions, plus problems with blood supply it attached itself to would have resulted too much bleeding and too much small intestine coming out with it if removed. The loss of small intestine would have resulted in greatly diminished quality of life.
Though we would have preferred it out, Dr. L said after taking a thorough look at it, he does not think that the mesentery tumor poses a threat (read bowel obstructions) in the foreseeable future, if ever. Sigh of relief. We'll know more in the coming days.
Follow Up Chemo?
We will get results of pathology report next week, probably Wed. In the mean time, Dr. L. expects that we’ll see the tumor markers drop significantly in the next couple of days as he thinks it likely that the spleen activity was the sole cause of the rising markers.
Based on what he saw, Dr. L. thinks that the tumor was not only on the outside of the spleen, but also invaded it. If it turns out that there was disease inside the organ, I’m guessing that may mean more chemo to insure against systemic spread, but haven’t had that conversation with doctor yet. We’ll cross that bridge when we get to it. What Dr. L. did say was that if Kevin does have chemo in the future, he thinks that having that diseased spleen out will help Kevin tolerate it much better.
Oh No, You Need a Spleen…
Once when Kevin was telling someone about all the innards he had removed during his Feb. 2004 surgery they replied that they didn’t realize one didn’t need those things, to which Kevin replied, “Oh no, you need them, you can just live without them.”
The spleen serves to ward off big, nasty viruses (like swine flu); without a spleen one is more susceptible to those bugs and things like pancreatitis. Kevin will be getting some major antibiotic doses and will always have to keep up with vaccines and flu shots.
Getting Sprung and Coming Home
Dr. Loggie says he wants to shoot for getting Kevin discharged from the hospital on Friday! Woo hoo! We’d then check into a local hotel until he’s had some more post op follow up and is healthy enough to fly. If all goes well, we should be home in less than two weeks. I’m not sure about total recovery time. Another bridge we can wait to cross.
Thanks!!
For the emails and facebook messages. Words of encouragement are not just a gesture, they really are encouraging. Thanks for taking time out of your day to send them. I'm sorry I haven't been able to respond to most, but I've appreciated every one and saved all for Kevin to read when he's up to it.
And a special thanks to my new PMP Awareness friend, Rosemary S. who was in Omaha tending to her nephew who had recent surgery with Dr. Loggie for PMP. Before driving home to Chicago today, she ran around to local stores to find a robe for Kevin, bought me cereal and water, and brought me an air mattress! The visit and the hug were very welcome, too. Please pray for Tom, her nephew (in late 20s) who was only diagnosed in June and who, like Kevin, will be living with inoperable tumor. He has a lot to process as he recovers. And, pray that the disease stays in remission.
Okay. You’re now about as informed as I am. Time for a nap!!!
Love and gratitude for you,
Roni
Surgery update -- 5 hours in
I got my last update a bit before noon CT. The liaison told me all is fine, and that they were getting ready to remove the spleen. Five hours to get to that point! When I asked if it was going slowly because of adhesions and/or bleeding, I was told that they are being “meticulous.” Ah yes, now I remember how this goes -- vague answers to specific questions.
The important thing is that I am told all is going well, and happy news – they have cleared their way to where they can see the mesentery tumor, and they plan to remove it once they’ve taken the spleen. Yay!! Thanks for all prayers that they could get that tumor during this surgery.
I neglected to ask how much longer the surgery is expected to take, but I’m sure I would have received a vague answer anyway. If I were in the surgeon’s shoes, I wouldn’t want to commit to specifics either, so I understand. I knew this day would be all about waiting,…
Assuming that the next update they give me doesn’t contain any surprising news, I’ll wait until the procedure is over and I’ve talked to the doc before I post again.
Thanks for all the emails and voice mails. It really helps me to know that despite sitting alone in a waiting room in Omaha, I’m not alone at all. You people are the best!
Roni
The important thing is that I am told all is going well, and happy news – they have cleared their way to where they can see the mesentery tumor, and they plan to remove it once they’ve taken the spleen. Yay!! Thanks for all prayers that they could get that tumor during this surgery.
I neglected to ask how much longer the surgery is expected to take, but I’m sure I would have received a vague answer anyway. If I were in the surgeon’s shoes, I wouldn’t want to commit to specifics either, so I understand. I knew this day would be all about waiting,…
Assuming that the next update they give me doesn’t contain any surprising news, I’ll wait until the procedure is over and I’ve talked to the doc before I post again.
Thanks for all the emails and voice mails. It really helps me to know that despite sitting alone in a waiting room in Omaha, I’m not alone at all. You people are the best!
Roni
Kevin went into surgery at 7:00 am
His spirits are good, considering… The entire staff here is so warm and gifted at putting people at ease. Not surprisingly, Kevin drew upon his humor to keep himself and the nurses laughing while waiting. But when he couldn’t think of a joke, he was pretty subdued, thinking about waking up with that NG tube and days of pain and weakness ahead of him. But I reminded him that though he feels helpless and weak lying on that gurney, he’s a warrior to be reckoned with.
The surgical staff informed us that blood tests showed that his platelet count is on the low side. Dr. L said that can either be caused by an unhealthy spleen (which is coming out) or be a marrow issue. It puts Kevin at extra risk for bleeding, so Dr. L. said he’s taking the IHCP option (heated chemo) off the table – it’s just too harsh. He’ll take the spleen out first and see if the platelet count goes up before determining what additional surgery he feels is safe to do. Please, please pray that the platelet counts come up and they are able to proceed with taking out the tumor on the mesentery. That’s the one that could cause real problems (bowel obstructions) down the road, so we want it out!!! Taking it out in a future surgery after getting platelets up I guess is an option, but Kevin has had enough surgeries. I really want this to be the last one he’ll need.
I’ll be getting my first update from the surgical team at about 9:00 CT.
Until then, thanks for the prayers!!!! Roni
The surgical staff informed us that blood tests showed that his platelet count is on the low side. Dr. L said that can either be caused by an unhealthy spleen (which is coming out) or be a marrow issue. It puts Kevin at extra risk for bleeding, so Dr. L. said he’s taking the IHCP option (heated chemo) off the table – it’s just too harsh. He’ll take the spleen out first and see if the platelet count goes up before determining what additional surgery he feels is safe to do. Please, please pray that the platelet counts come up and they are able to proceed with taking out the tumor on the mesentery. That’s the one that could cause real problems (bowel obstructions) down the road, so we want it out!!! Taking it out in a future surgery after getting platelets up I guess is an option, but Kevin has had enough surgeries. I really want this to be the last one he’ll need.
I’ll be getting my first update from the surgical team at about 9:00 CT.
Until then, thanks for the prayers!!!! Roni
Monday, July 27, 2009
What to expect -- it depends...
This is Roni writing from Kevin’s hospital room. He’s been admitted, fed Jello, pricked, EKG’d... All the usual pre-admission stuff with the usual result – “otherwise healthy”. It’s a blessing that he’s going into the surgery strong.
The reason for the wide range of possibilities is that the CT scans don’t:
- always show all disease; per Dr. L., CT scans “lie” a lot. But Kevin’s have been consistent enough that his are somewhat more reliable than most.
- show extent of scar tissue, which is a huge factor in what can be successfully removed
The good news is that even with worse case scenario – can’t successfully remove tumors – chemo is still an option. But we are praying that the outcome of the surgery will be cure, or at very least, remission and chemo will not be needed to keep the disease from progressing. Basically, we are asking G-d to restore quality of life as well as length of days.
It’s standard with these abdominal surgeries to give a private room and have the caregiver stay with the patient, so Kev’s hospital room is home base for both of us until the morning. They’ll come at about 6:00 a.m. Central time to take him to the OR. In between answering questions, getting X-rays, etc., Kev’s been listening to music, trying to rest some and battling his nerves. Just being in a hospital room and wearing the gown brings back a lot of memories, none of them pleasant. He has been buoyed up by the emails and facebook messages he’s received since we left home yesterday. What wonderful, caring people we have in our lives!!
Contacting us:
To reach Kevin, emailing (kevkersey@me.com) or leaving comments on this blog are best. That way he can read as he feels up to it. Plus, he’ll have the dreaded NG tube in for the first few days, so it will hurt to talk.
601 N. 30th St.
Omaha, NE 68131
We feel the love and prayers,
Sunday, July 26, 2009
Preparing For The Next Battle
So, everyone knows that I am going in for my 4th surgery to deal with my cancer, and if you didn’t know, you do now.
Today, Roni and I are flying to Omaha, and Monday, I check into the hospital. I’ll do the obligatory “pre-admission” testing, and hopefully no CT scan. Then in the afternoon start the “bowel prep”. Yes, that is as bad as it sounds. :-)
Tuesday morning, they’ll come get me, hook me up to an IV, wheel me into the OR and put me to sleep. This will be the hard part for Roni. Waiting.
The doctor believes there are two spots he can get easily, and two others he says he will try to get if there is not too much scar tissue. The amount of scar tissue will also determine if he uses heated chemo during the surgery.
What we are praying for, is that the doctor is able to get all of the tumor. That the recovery will be quick, and uneventful. That Roni will be able to get much needed rest, while at the same time, being able to keep an eye on me. And that in less than 2 weeks, we’ll be on our way home.
Roni will keep you all updated on my progress until I am able to take over.
To close on a personal note, I can’t help but remember my hospital buddy from my last two surgeries in Washington DC. Her name was Alice Hyland, and she was diagnosed with the same cancer I have. She had her MOAS just a day or so later then I did. She was back in the hospital in July 2004, for a follow-up surgery, just a week after I had mine.
I remember her parents visiting me every day, just to check in and see how I was doing. I remember sitting in her room, chatting. I remember walking the halls together, dragging our IV poles with us.
I remember finding out she passed away about two years ago. She was only 29 years old.
I told my wife that I would continue fighting. I’m fighting for Roni. For my family. For my friends. For my fellow PMP patients. And I’m fighting for the memory of those whose battle is over.
Please keep us all in your prayers.
Thank you,
Kevin
Wednesday, June 03, 2009
Surgery Number 4
OK everyone, here’s the latest on my situation.
We met with Dr. Loggie last week (May 27th) for a follow up consultation. One of the things we had been frustrated about was that no one has been able to give a clear choice as what to do next. Fortunately, Dr. Loggie was very forthright and “confidently” suggested a surgery to remove two spots that he believes are causing the rise in tumor markers, and could possibly cause problems down the road.
The two spots are on the spleen and the mesentery, which is near the bowels. Dr. Loggie believes that if there is not much scar tissue, it should be a fairly straightforward surgery. However if there is too much scar tissue, and he doesn’t think he can remove the tumors, he says I still have options.
The option is a drug called Erbitux, given with chemo. It turns out that my tumor was tested to see if had mutated. Fortunately for me it hadn’t, so Erbitux is a possibility.
The surgery is scheduled for July 28th in Omaha, NE. I will be admitted to the hospital July 27th for testing. It is estimated that I will be in the hospital for 7 – 10 days. Dr. Loggie will also want me to stay in Omaha for a couple of weeks (which includes the hospital stay). If I end up doing better, I’d be able to leave earlier.
As stated in the title of this post, this will be my fourth surgery related to cancer. Hopefully it will be the easiest.
As of now, I am doing OK. The neuropathy in my fingers and feet are still bothersome, especially with the cold. My finger tips are effected the most, making everyday simple tasks a bit more difficult. The neuropathy also causes easy bruising.
So, that’s the story so far. Your prayers of course are always appreciated.
We met with Dr. Loggie last week (May 27th) for a follow up consultation. One of the things we had been frustrated about was that no one has been able to give a clear choice as what to do next. Fortunately, Dr. Loggie was very forthright and “confidently” suggested a surgery to remove two spots that he believes are causing the rise in tumor markers, and could possibly cause problems down the road.
The two spots are on the spleen and the mesentery, which is near the bowels. Dr. Loggie believes that if there is not much scar tissue, it should be a fairly straightforward surgery. However if there is too much scar tissue, and he doesn’t think he can remove the tumors, he says I still have options.
The option is a drug called Erbitux, given with chemo. It turns out that my tumor was tested to see if had mutated. Fortunately for me it hadn’t, so Erbitux is a possibility.
The surgery is scheduled for July 28th in Omaha, NE. I will be admitted to the hospital July 27th for testing. It is estimated that I will be in the hospital for 7 – 10 days. Dr. Loggie will also want me to stay in Omaha for a couple of weeks (which includes the hospital stay). If I end up doing better, I’d be able to leave earlier.
As stated in the title of this post, this will be my fourth surgery related to cancer. Hopefully it will be the easiest.
As of now, I am doing OK. The neuropathy in my fingers and feet are still bothersome, especially with the cold. My finger tips are effected the most, making everyday simple tasks a bit more difficult. The neuropathy also causes easy bruising.
So, that’s the story so far. Your prayers of course are always appreciated.
Saturday, April 04, 2009
Best Card Ever
Just wanted to share with you all what I think is probably the best card I ever received. It was from a couple in our synagogue.
On the outside is a cartoon picture of an owl sitting on a branch and it says, "One day, you'll look back on all of this with the wisdom that distance bestows and you'll say..."
.
.
.
Open card...
.
.
.
"Wow, that sucked."
I'm still laughing...
On the outside is a cartoon picture of an owl sitting on a branch and it says, "One day, you'll look back on all of this with the wisdom that distance bestows and you'll say..."
.
.
.
Open card...
.
.
.
"Wow, that sucked."
I'm still laughing...
Wrapping my head around the “prognosis”
Roni writing.
So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.
I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.
Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.
BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.
But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.
So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.
If you are confused after reading that, then welcome to the club.
So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.
In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.
We appreciate all of you who join us in prayer and support us with your words of love and encouragement.
So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.
I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.
Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.
BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.
But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.
So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.
If you are confused after reading that, then welcome to the club.
So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.
In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.
We appreciate all of you who join us in prayer and support us with your words of love and encouragement.
Thursday, April 02, 2009
Doctor's Visit Update
Tuesday started like every other day. Roni left for work, and I woke up about 8 AM. I checked my email, surfed some of my favourite conservative blogs, then laid on the couch eating bon bons and watched Oprah. OK, you got me. I didn't really watch Oprah, and we don't have any bon bons in the house.
I was supposed to pick up a prescription from a pharmacy about a half mile away and was wise enough to call first to make sure it would be ready. Glad I did because it wasn't. They said they had called the doctor to get him to send a new prescription and was waiting to hear back. I then called the doctor's office and they said that if the pharmacy called them, they would OK the refill. So I called the pharmacy and told them to call again. Which they did.
I then went to get a haircut and beard trim, stopped by the store and picked up some snacks for our plane ride to Omaha, then stopped and got some lunch.
As I was finishing lunch, I got a message from United airline saying our 6 PM flight to Chicago (on our way to Omaha) was canceled due to mechanical problems. Great. I then spent the next hour or so calling the airline and getting a new flight. The only problem there is that the only flight they could get us on left an hour earlier, so I had to call Roni and let her know. By this time, I only had a few minuets to get our bag and laptop, and leave for the pharmacy (and hope that they had in fact called the doctor for the new prescription.)
I walked to the pharmacy, which included taking about a hundred steps (and I NEVER exaggerate) down the hill. As I have not had a lot of exercise due to the chemo side effect of fatigue, this was not as easy as it sounds. Needless to say, even though it was all downhill, it still worked muscles I haven't worked in a long time. I waited about 15 minutes for the prescription (which was ready), called for a car to the airport, and made it there in time. Roni had arrived there just a few minutes before me, and as I had checked in online, I already had our boarding passes. We headed to the gate, and guess what? This new flight was delayed and it ended up leaving after when our first flight was supposed to have left. We flew to Chicago Ohare, where we were to catch a connecting flight to Omaha. And just to make life more interesting, that flight was also running late, and we left Omaha over an hour later than we were supposed to. We arrived at the hotel about 11:30 PM tired but glad to finally be there.
In the morning, we had a quick breakfast with Roni's cousin whom she hadn't seen for years, and I had never met. We had a good time catching up and talking about life.
At about 10:15 AM, we checked out of the hotel and walked over to see Dr. Loggie. Unfortunately, he was seeing another patient, so we didn't get to see him until about 12 noon. The bad thing about this is that our flight was scheduled to leave at 1:30 PM, which meant we were a little rushed in our consultation
Holly, Dr. Loggie's PA, took my vitals, which were pretty good. Blood pressure was good. Weight was fine. Temp was normal. Heck, if it wasn't for the cancer, I'd be in pretty good shape.
I was then asked to put on a gown and wait for the doctor.
Dr. Loggie came in and did a quick examination, which included the always fun anal examination. Kind of reminded me of the time I was abducted by aliens. :-)
We told him what Dr. Esquivel told us (that he didn't really know what was going on with me, and besides not recommending surgery, didn't have much else to recommend). He then asked if we had seen the scans, and since we hadn't, brought us into another room so he could explain what he saw.
The good news is that he did not recommend surgery either. The bad news is that he too said he did not understand what was going on with me. He said that according to the scans, he did not see anything of great concern, but was curious as to why the tumor markers were rising, even if they were not rising dramatically.
One thing he did mention is that with my original pathology report, which included signet ring cells, he was still amazed that I was still alive (something that Dr. Esquivel also mentioned) and looking as well as I do. While this was comforting, the fact that no one could tell us why the tumor markers were rising was still a little disconcerting.
His recommendation for now was to wait a couple of months, get another CT scan, another set of tumor markers and come see him again to see if anything changes and then go from there.
As we were in a hurry to catch a flight home, one of the ladies that work in the cancer center gave us a ride to the airport. When we went to check in, we were told we were too late, but were given a boarding pass and told to race to the gate in the hope they were let us on.
We went through security, and Roni raced to the gate to let them know I would be there soon. Of course "easy" wasn't on the menu. Security took our bag, went through it and took out all of our 3 oz containers because they weren't all in a separate bag. They did this a couple of times, to make sure they got everything. While this was not a problem leaving NY, I guess TSA in smaller airports like Omaha have more time on their hands. Needless to say, we missed our flight.
Fortunately Roni had already got us seats on another flight that was supposed to leave about 3 PM. That gave us time to get some lunch and relax.
We were supposed to fly from Omaha to Chicago, then from there to Washington DC, and from there to JFK. Because we missed our first flight, we also missed our connecting flight out of Chicago. This turned out to our advantage because we were able to get on standy on a flight directly to La Guardia (instead of flying to DC, then to JFK). We thought this was great because we would get home sooner. As luck would have it, this flight was also late, and because La Guardia was experiencing bad weather, flights arriving there were being delayed, which meant we left Chicago about an hour and half later than we were scheduled to leave.
We finally landed in La Guardia, caught a cab and got home about 9:30 PM. After all the traveling travails we have had in the past week or so, we were glad to be home and looking forward to not having to fly again for at least a couple of months.
So for now, concerning the cancer, we are no closer to determining a plan of action for this recurrence, but we feel comfortable that we have good, qualified people on our side who are working with us to keep me alive and give me a good quality of life. And for now, we just keep living, and enjoy life the best we are able.
One of the hard parts is trying to plan for the future. My disability runs out in a week or so, which means that my severance (from being laid off from work) will soon kick in. Does that mean that I start looking for a job? Plan for more chemo or some other treatment? How will any treatment effect my looking for a job, or if I got a job, would it be put in jeopardy because of my cancer? These are questions we have no answer for.
One thing we do know from experience is that G-d has been with us through all of this. We don't know what the future holds, but we do know that G-d has led us through many hard times before, and all we can do is trust in Him that He will continue to guide us through this current battle.
Of course because of all the walking I did on Tuesday, my legs are aching. Fortunately it is an ache from not exercising and not from anything that should cause concern. I am also starting to get some energy back, so slowly but surely I hope to get back into shape and get ready for whatever comes next. Spring is also coming and it is warming up here in NYC, so I am able to get out more and get some fresh air. It's still not as warm as Jamaica was, but it's better than the frigid cold we had during the winter. I'm looking forward to getting out more, getting some exercise and getting back to living. And until we know more, that's what I'll do.
I would also like to thank everyone for your prayers, well wishes and good thoughts. Your love and concern are felt deeply by Roni and me and we cherish all of you. We'll keep you updated as we learn more.
Kevin
I was supposed to pick up a prescription from a pharmacy about a half mile away and was wise enough to call first to make sure it would be ready. Glad I did because it wasn't. They said they had called the doctor to get him to send a new prescription and was waiting to hear back. I then called the doctor's office and they said that if the pharmacy called them, they would OK the refill. So I called the pharmacy and told them to call again. Which they did.
I then went to get a haircut and beard trim, stopped by the store and picked up some snacks for our plane ride to Omaha, then stopped and got some lunch.
As I was finishing lunch, I got a message from United airline saying our 6 PM flight to Chicago (on our way to Omaha) was canceled due to mechanical problems. Great. I then spent the next hour or so calling the airline and getting a new flight. The only problem there is that the only flight they could get us on left an hour earlier, so I had to call Roni and let her know. By this time, I only had a few minuets to get our bag and laptop, and leave for the pharmacy (and hope that they had in fact called the doctor for the new prescription.)
I walked to the pharmacy, which included taking about a hundred steps (and I NEVER exaggerate) down the hill. As I have not had a lot of exercise due to the chemo side effect of fatigue, this was not as easy as it sounds. Needless to say, even though it was all downhill, it still worked muscles I haven't worked in a long time. I waited about 15 minutes for the prescription (which was ready), called for a car to the airport, and made it there in time. Roni had arrived there just a few minutes before me, and as I had checked in online, I already had our boarding passes. We headed to the gate, and guess what? This new flight was delayed and it ended up leaving after when our first flight was supposed to have left. We flew to Chicago Ohare, where we were to catch a connecting flight to Omaha. And just to make life more interesting, that flight was also running late, and we left Omaha over an hour later than we were supposed to. We arrived at the hotel about 11:30 PM tired but glad to finally be there.
In the morning, we had a quick breakfast with Roni's cousin whom she hadn't seen for years, and I had never met. We had a good time catching up and talking about life.
At about 10:15 AM, we checked out of the hotel and walked over to see Dr. Loggie. Unfortunately, he was seeing another patient, so we didn't get to see him until about 12 noon. The bad thing about this is that our flight was scheduled to leave at 1:30 PM, which meant we were a little rushed in our consultation
Holly, Dr. Loggie's PA, took my vitals, which were pretty good. Blood pressure was good. Weight was fine. Temp was normal. Heck, if it wasn't for the cancer, I'd be in pretty good shape.
I was then asked to put on a gown and wait for the doctor.
Dr. Loggie came in and did a quick examination, which included the always fun anal examination. Kind of reminded me of the time I was abducted by aliens. :-)
We told him what Dr. Esquivel told us (that he didn't really know what was going on with me, and besides not recommending surgery, didn't have much else to recommend). He then asked if we had seen the scans, and since we hadn't, brought us into another room so he could explain what he saw.
The good news is that he did not recommend surgery either. The bad news is that he too said he did not understand what was going on with me. He said that according to the scans, he did not see anything of great concern, but was curious as to why the tumor markers were rising, even if they were not rising dramatically.
One thing he did mention is that with my original pathology report, which included signet ring cells, he was still amazed that I was still alive (something that Dr. Esquivel also mentioned) and looking as well as I do. While this was comforting, the fact that no one could tell us why the tumor markers were rising was still a little disconcerting.
His recommendation for now was to wait a couple of months, get another CT scan, another set of tumor markers and come see him again to see if anything changes and then go from there.
As we were in a hurry to catch a flight home, one of the ladies that work in the cancer center gave us a ride to the airport. When we went to check in, we were told we were too late, but were given a boarding pass and told to race to the gate in the hope they were let us on.
We went through security, and Roni raced to the gate to let them know I would be there soon. Of course "easy" wasn't on the menu. Security took our bag, went through it and took out all of our 3 oz containers because they weren't all in a separate bag. They did this a couple of times, to make sure they got everything. While this was not a problem leaving NY, I guess TSA in smaller airports like Omaha have more time on their hands. Needless to say, we missed our flight.
Fortunately Roni had already got us seats on another flight that was supposed to leave about 3 PM. That gave us time to get some lunch and relax.
We were supposed to fly from Omaha to Chicago, then from there to Washington DC, and from there to JFK. Because we missed our first flight, we also missed our connecting flight out of Chicago. This turned out to our advantage because we were able to get on standy on a flight directly to La Guardia (instead of flying to DC, then to JFK). We thought this was great because we would get home sooner. As luck would have it, this flight was also late, and because La Guardia was experiencing bad weather, flights arriving there were being delayed, which meant we left Chicago about an hour and half later than we were scheduled to leave.
We finally landed in La Guardia, caught a cab and got home about 9:30 PM. After all the traveling travails we have had in the past week or so, we were glad to be home and looking forward to not having to fly again for at least a couple of months.
So for now, concerning the cancer, we are no closer to determining a plan of action for this recurrence, but we feel comfortable that we have good, qualified people on our side who are working with us to keep me alive and give me a good quality of life. And for now, we just keep living, and enjoy life the best we are able.
One of the hard parts is trying to plan for the future. My disability runs out in a week or so, which means that my severance (from being laid off from work) will soon kick in. Does that mean that I start looking for a job? Plan for more chemo or some other treatment? How will any treatment effect my looking for a job, or if I got a job, would it be put in jeopardy because of my cancer? These are questions we have no answer for.
One thing we do know from experience is that G-d has been with us through all of this. We don't know what the future holds, but we do know that G-d has led us through many hard times before, and all we can do is trust in Him that He will continue to guide us through this current battle.
Of course because of all the walking I did on Tuesday, my legs are aching. Fortunately it is an ache from not exercising and not from anything that should cause concern. I am also starting to get some energy back, so slowly but surely I hope to get back into shape and get ready for whatever comes next. Spring is also coming and it is warming up here in NYC, so I am able to get out more and get some fresh air. It's still not as warm as Jamaica was, but it's better than the frigid cold we had during the winter. I'm looking forward to getting out more, getting some exercise and getting back to living. And until we know more, that's what I'll do.
I would also like to thank everyone for your prayers, well wishes and good thoughts. Your love and concern are felt deeply by Roni and me and we cherish all of you. We'll keep you updated as we learn more.
Kevin
Sunday, March 29, 2009
How I'm Doing
Just a quick update to let you know how I am doing physically.
The side effects of the chemo are still lingering. The cold is still causing neuropathy in my hands and feet. I am able to drink cold drinks, but can't hold the cold glass for very long before my fingers start to hurt. While it is slowly getting better, it is still very annoying. Being back in NYC, I feel it especially at night. I'll wake up and the neuropathy will be bothering me. So I go back and forth from being hot and taking the blankets off, to being cold and pulling the covers back over me.
The fatigue is also still bothering me. A couple of weeks ago I went to see my oncologist and had to be given a shot of Neuprogen to bring my blood levels back up (white and red blood cells were low). Hopefully this too will pass and I'll start to get some energy back.
The last side effect that keeps bothering me is a metallic taste on my tongue that has lingered for awhile now. Fortunately, it does not keep me from being able to taste food, it's just in between eating or drinking that is when it is annoying.
As for doctor visits, this Tuesday, we will be heading to Omaha, NE. Wednesday morning we will be meeting with Dr. Loggie, a surgeon and specialist in PMP to see what he might suggest for our next steps. I'm not looking forward to more traveling, but hopefully we'll get some good news.
I was also scheduled to get a second opinion from another medical oncologist, but I have to get more of my medical records to her, so that meeting is postponed until April 13th.
Well, that's it for now. I'll post again after we meeting with the surgeon.
The side effects of the chemo are still lingering. The cold is still causing neuropathy in my hands and feet. I am able to drink cold drinks, but can't hold the cold glass for very long before my fingers start to hurt. While it is slowly getting better, it is still very annoying. Being back in NYC, I feel it especially at night. I'll wake up and the neuropathy will be bothering me. So I go back and forth from being hot and taking the blankets off, to being cold and pulling the covers back over me.
The fatigue is also still bothering me. A couple of weeks ago I went to see my oncologist and had to be given a shot of Neuprogen to bring my blood levels back up (white and red blood cells were low). Hopefully this too will pass and I'll start to get some energy back.
The last side effect that keeps bothering me is a metallic taste on my tongue that has lingered for awhile now. Fortunately, it does not keep me from being able to taste food, it's just in between eating or drinking that is when it is annoying.
As for doctor visits, this Tuesday, we will be heading to Omaha, NE. Wednesday morning we will be meeting with Dr. Loggie, a surgeon and specialist in PMP to see what he might suggest for our next steps. I'm not looking forward to more traveling, but hopefully we'll get some good news.
I was also scheduled to get a second opinion from another medical oncologist, but I have to get more of my medical records to her, so that meeting is postponed until April 13th.
Well, that's it for now. I'll post again after we meeting with the surgeon.
Vacation
As I mentioned in my last post, Roni and I headed to Montego Bay, Jamaica for a vacation. We needed some time to just relax and not think about cancer. Plus, I was able to go outside, something I haven't been able to do while it is cold here in NYC. The temperature in Jamaica was between 70 and 80f, and even though the neuropathy in my hands and feet bothered me a little, the weather allowed me to be outside, even in the evening.
The resort was OK. Nothing to write home about, but we got a good price, so it was worth it, especially as it was an all-inclusive. Besides, the view from our room was pretty good, and we were able to watch the sunset over the ocean every evening.
Usually while on vacation, we try to do something adventurous. In the past we have walked through the old city of Fez, Morocco, walked on a glacier in Alaska, went snorkeling in the Bahamas, etc. But this time, we just stayed on the resort. I am still fighting fatique from the chemo, so we decided that this vacation was for relaxing. We did go out of the resort once and within 5 minutes were accosted by two people to come to their souvenior stores. That was enough for me to keep me from leaving the resort. I just wasn't up for dealing with people pretending to be friendly, but only wanting my money.
The only problem we had was when we were on the plane to come home on Thursday. As they were towing the plane back from the gate, something happened to the towbar and we think damaged the nose wheel gear. We sat on the plane for about an hour before they decided that it wouldn't be safe to fly, so we went back to the gate and got off. After about an hour or so, American Airlines told us they were sending a part to Jamaica to fix the plane, and in the meantime, they would be putting us up in a hotel for the evening. So, more waiting while we stood in line for our hotel vouchers. Once we got those, then got on a bus, it was about 7 PM when we got to the hotel, Rosehall Resort and Spa (a Hilton hotel). When you realize we left our resort at 12:30 PM and our flight was support to depart about 3 PM, it was turning out to be a long day.
They told us that our flight was going to leave at 6 AM, so we had to be ready to leave for the airport at 3:30 AM, or we used to call it in the Air Force, Oh-Dark-Thirty.
The voucher they gave us was good for food and drink, so we had a great meal before heading to our room. I took a hot shower, and laid down to sleep about 9:30. I haven't been sleeping well, so I usually take an Ambian to help me sleep. Well, as we had to be up at 3, I did not take an Ambian, and probably got a total of 30 mins or so of sleep.
3 AM, our alarm went off, we packed up and left for the airport about 3:40. Because we had to go through customs and immigration when we left the airport on Thursday, we had to go through all that again to go back to our flight. Our flight was scheduled to leave at 6AM, but we didn't start boarding till about 5:40. We finally took off about 7 AM. The flight took over 3 hours. After getting our luggage, catching a cab (getting stuck in traffic), etc. we finally got home about 12 noon. So as you can imagine, it was a long ordeal getting home, but we made it back safe and sound.
But even with all of that, the trip was worth it. The warm weather was great and I enjoyed being able to be outside. Hopefully it will start warming up around here so I can get outside my apartment more as well.
The resort was OK. Nothing to write home about, but we got a good price, so it was worth it, especially as it was an all-inclusive. Besides, the view from our room was pretty good, and we were able to watch the sunset over the ocean every evening.
Usually while on vacation, we try to do something adventurous. In the past we have walked through the old city of Fez, Morocco, walked on a glacier in Alaska, went snorkeling in the Bahamas, etc. But this time, we just stayed on the resort. I am still fighting fatique from the chemo, so we decided that this vacation was for relaxing. We did go out of the resort once and within 5 minutes were accosted by two people to come to their souvenior stores. That was enough for me to keep me from leaving the resort. I just wasn't up for dealing with people pretending to be friendly, but only wanting my money.
The only problem we had was when we were on the plane to come home on Thursday. As they were towing the plane back from the gate, something happened to the towbar and we think damaged the nose wheel gear. We sat on the plane for about an hour before they decided that it wouldn't be safe to fly, so we went back to the gate and got off. After about an hour or so, American Airlines told us they were sending a part to Jamaica to fix the plane, and in the meantime, they would be putting us up in a hotel for the evening. So, more waiting while we stood in line for our hotel vouchers. Once we got those, then got on a bus, it was about 7 PM when we got to the hotel, Rosehall Resort and Spa (a Hilton hotel). When you realize we left our resort at 12:30 PM and our flight was support to depart about 3 PM, it was turning out to be a long day.
They told us that our flight was going to leave at 6 AM, so we had to be ready to leave for the airport at 3:30 AM, or we used to call it in the Air Force, Oh-Dark-Thirty.
The voucher they gave us was good for food and drink, so we had a great meal before heading to our room. I took a hot shower, and laid down to sleep about 9:30. I haven't been sleeping well, so I usually take an Ambian to help me sleep. Well, as we had to be up at 3, I did not take an Ambian, and probably got a total of 30 mins or so of sleep.
3 AM, our alarm went off, we packed up and left for the airport about 3:40. Because we had to go through customs and immigration when we left the airport on Thursday, we had to go through all that again to go back to our flight. Our flight was scheduled to leave at 6AM, but we didn't start boarding till about 5:40. We finally took off about 7 AM. The flight took over 3 hours. After getting our luggage, catching a cab (getting stuck in traffic), etc. we finally got home about 12 noon. So as you can imagine, it was a long ordeal getting home, but we made it back safe and sound.
But even with all of that, the trip was worth it. The warm weather was great and I enjoyed being able to be outside. Hopefully it will start warming up around here so I can get outside my apartment more as well.
Friday, March 20, 2009
The Fun Continues...
And by "Fun", I mean "not fun".
I talked to my oncologist today to get the results of my tumor markers taken on Tuesday. It seems that after I finished chemo, my markers started to go up again. My CEA went from around 16.9 (taken after my 5th round) to 19 (a couple of weeks after my final round). Not very good news at all.
Our next step is to meet with another PMP specialist in Omaha, NE. We had met with Dr. Loggie before, but decided to go with a surgeon a bit closer. But since the doctor that was closer did not give us very many options, we have decided to go back to the one in Omaha. We will be meeting with Dr. Loggie on April 1st (yes, April Fools Day) at 10:30 AM to see what he might suggest. We found him to be very hopeful last time, and hope he will have some good news for us this time as well.
The Monday before we go to Omaha, we will also be meeting with another medical oncologist here in New York City. While I find my oncologist to be very capable, we are just trying to cover all of our bases with second opinions.
And so we keep seeking answers and we continue to appreciate your prayers.
Kevin
PS - Because we also need to relax, Roni and I will be heading to Jamaica tomorrow (Mar 21) for a few days of warmth and nothing to do except lay on the beach. We are looking forward to taking a break from thinking about cancer for awhile.
I talked to my oncologist today to get the results of my tumor markers taken on Tuesday. It seems that after I finished chemo, my markers started to go up again. My CEA went from around 16.9 (taken after my 5th round) to 19 (a couple of weeks after my final round). Not very good news at all.
Our next step is to meet with another PMP specialist in Omaha, NE. We had met with Dr. Loggie before, but decided to go with a surgeon a bit closer. But since the doctor that was closer did not give us very many options, we have decided to go back to the one in Omaha. We will be meeting with Dr. Loggie on April 1st (yes, April Fools Day) at 10:30 AM to see what he might suggest. We found him to be very hopeful last time, and hope he will have some good news for us this time as well.
The Monday before we go to Omaha, we will also be meeting with another medical oncologist here in New York City. While I find my oncologist to be very capable, we are just trying to cover all of our bases with second opinions.
And so we keep seeking answers and we continue to appreciate your prayers.
Kevin
PS - Because we also need to relax, Roni and I will be heading to Jamaica tomorrow (Mar 21) for a few days of warmth and nothing to do except lay on the beach. We are looking forward to taking a break from thinking about cancer for awhile.
Tuesday, March 17, 2009
Faith and Hope
Roni here.
Talking to the doctor yesterday was deflating, to say the least. But with help from wise words from our rabbi, encouraging words from friends, and perspective that comes with prayer, I am feeling hopeful and remembering that doctors can only give us their best guesses and, as scientists, don't factor in divine intervention. And I have learned through this journey that that is a very incomplete way to look at things.
We remind ourselves that thus far, we have heard just one doctor's opinion, and we have already contacted a surgeon in NE who, when we consulted him last winter, seemed to think that when the time was right he could perform a preemptive, curative surgery. So, we are in the process of lining up a second opnion consult with him.
We've been remembering how when Kevin was first diagnosed 5 years ago G-d led us, through a series of coincidences that are better explained as "divine intervention," away from the doctors who did not have hope for him to the one who was willing to take Kevin's case. And how even that doctor was amazed at the outcome calling Kevin "miracle man." When the oncologist reviewed Kevin's chart with us prior to Kevin's discharge afer the MOAS*, he looked up after reading the medical history and sequence of events, looked us both in the eyes and said, "I hope you believe in G-d." We did and do! We know that it's doctors' jobs to approach things as scientists dealing with odds and probable outcomes, but Kevin has already beat odds of 95% against. So, we will continue to seek the right doctor(s) while putting our trust in G-d.
And as always, we are grateful for all prayers and words of support. We are blessed to have so many caring people in our lives.
*Mother of all surgeries
Talking to the doctor yesterday was deflating, to say the least. But with help from wise words from our rabbi, encouraging words from friends, and perspective that comes with prayer, I am feeling hopeful and remembering that doctors can only give us their best guesses and, as scientists, don't factor in divine intervention. And I have learned through this journey that that is a very incomplete way to look at things.
We remind ourselves that thus far, we have heard just one doctor's opinion, and we have already contacted a surgeon in NE who, when we consulted him last winter, seemed to think that when the time was right he could perform a preemptive, curative surgery. So, we are in the process of lining up a second opnion consult with him.
We've been remembering how when Kevin was first diagnosed 5 years ago G-d led us, through a series of coincidences that are better explained as "divine intervention," away from the doctors who did not have hope for him to the one who was willing to take Kevin's case. And how even that doctor was amazed at the outcome calling Kevin "miracle man." When the oncologist reviewed Kevin's chart with us prior to Kevin's discharge afer the MOAS*, he looked up after reading the medical history and sequence of events, looked us both in the eyes and said, "I hope you believe in G-d." We did and do! We know that it's doctors' jobs to approach things as scientists dealing with odds and probable outcomes, but Kevin has already beat odds of 95% against. So, we will continue to seek the right doctor(s) while putting our trust in G-d.
And as always, we are grateful for all prayers and words of support. We are blessed to have so many caring people in our lives.
*Mother of all surgeries
Monday, March 16, 2009
PET Scan Update
Well, we finally heard back from Dr. Esquivel this afternoon. As many other times in this journey, we did not get the news we were hoping for. Basically, Dr. Esquivel said besides doing more chemo, there is not much else to do. To us, it sounded like, "just wait for the inevitable to happen." He does not believe that a surgery would be curative, as he does not believe he would be able to get everything. And, he confirmed what we have always been told, chemo will not kill this cancer, just keep it at bay for awhile.
So, according to his recommendation, it is either more chemo, or nothing.
Not being satisfied with either of those choices, we are in the process of getting some more opinions. One thing we have become a strong advocate for.
We will be contacting Dr. Loggie, a specialist in Omaha, NE that we met with before, and who at one point thought surgery would be helpful, but just not necessary when we met with him (which was in Dec 07). So we will meet with him again to see if his opinion has changed.
I have also made an appointment (March 30th) to see another medical oncologist who has experience with this disease. While my oncologist has been treating me for over 5 years, he still relies often on the opinion of the surgeons that we meet with, so it would be good to see what another oncologist would have to say about my situation.
And there you have it. Another bump on this road that we have been diverted on to. Is it scary? Heck ya. Being told that there is really nothing that can be done is frightening. Your mind starts racing towards the worst possible outcome, even though in reality, none of us know what the future holds.
Maybe it's not knowing what the future holds that is scary. Maybe it's that we have no control of what the future holds that is scary. Maybe it's that the future has a possibility of creeping up on us faster than we want.
Maybe it's a little bit of all three.
I'll post again when we get more information.
Thursday, February 19, 2009
5 Years Post Op
Yesterday (Feb 18th) was the 5th anniversary of my MOAS (Mother Of All Surgeries), which was done in Washington DC. So, 5 years ago today, I was probably getting out of ICU and being moved to my private room, where I would spend the next 16 days.
Since then, I have had some ups and downs. Roni and I have had opportunities to travel to some great places (Israel, Florida, Arizona, Bahamas). We have spent time with friends and family. We've eaten some great food and have enjoyed life.
On the down side, we have gone through the battle of cancer recurrence. We have met with cancer specialists, spent time in doctors offices, and chemo rooms.
It's been one heck of a ride, and one that we were hoping not to have to go through again, but, here we are.
We are thankful that G-d has been with us, and seen us through some rough times. He has given us the courage and strength we needed, when we needed it. We are thankful for friends and family that have stood with us during this time, and can never do enough to show our appreciation for the love that has been shown to us, and the prayers that have been offered up for us.
So, 5 years since my major cancer surgery, and 5 years, 4 months since I was diagnosed and I'm still here. In 5 years, I hope to post again about the adventures, trials, good times and bad times that we have gone through.
Kevin
Since then, I have had some ups and downs. Roni and I have had opportunities to travel to some great places (Israel, Florida, Arizona, Bahamas). We have spent time with friends and family. We've eaten some great food and have enjoyed life.
On the down side, we have gone through the battle of cancer recurrence. We have met with cancer specialists, spent time in doctors offices, and chemo rooms.
It's been one heck of a ride, and one that we were hoping not to have to go through again, but, here we are.
We are thankful that G-d has been with us, and seen us through some rough times. He has given us the courage and strength we needed, when we needed it. We are thankful for friends and family that have stood with us during this time, and can never do enough to show our appreciation for the love that has been shown to us, and the prayers that have been offered up for us.
So, 5 years since my major cancer surgery, and 5 years, 4 months since I was diagnosed and I'm still here. In 5 years, I hope to post again about the adventures, trials, good times and bad times that we have gone through.
Kevin
Sunday, February 15, 2009
One Week of Chemo To Go
As the title of the post says, I have one week of chemo left. Tomorrow (Monday) I will get my last infusion of Oxiliplatin. This is one thing I both dread and look forward to. Dread, because of the pain, and the side effects. The reason I look forward to it is because it is the last infusion, and I'll be glad when it is over and done with.
As you may know, I am taking two types of chemo. Oxiliplatin is one, and Xeloda is the other. Xeloda is taken orally in pill form. I take 3 in the morning and 3 at night. The last day I will have to take Xeloda is next Sunday (Feb 22), which will also be our 17th wedding anniversary. It's pretty safe to say I won't be up for much celebration, so we'll have to wait until some of the side effects start to wear off.
As one of the latest posts Roni made, we need my platelets to be high enough so that I can get the infusion tomorrow, so we seek your prayers that my blood levels will be good enough for the chemo treatment.
I also want to update you on my tumor markers that were taken during my last chemo infusion. After three rounds of chemo, my CEA dropped from 28.9 to 15.7. After the fourth round, it went back up to 16.5. Not a big increase, and my oncologist didn't seem that concerned. The normal range should be between 0 and 2.5, so it still has a ways to go. We're praying that the blood test taken tomorrow, will show another decrease. My oncologist also said that the chemo will probably continue working for up to a month after the treatment, so hopefully, the CEA will continue to drop.
So, what can we expect after the chemo is over? There are a couple of scenarios. The first week in March, I will get another PET/CT scan to see if the lymph nodes near the tumor "lights" up. If it does, that means that the tumor is still active, which will most likely mean another surgery. Because I will have to wait at least a month after chemo, the surgery won't take place any sooner than March 23rd. If the lymph nodes do not "light" up, that could mean that we just go back to watching and waiting. After the PET/CT scan, we'll meet with our specialist to see what he recommends.
We continue to both seek, and appreciate your prayers and thoughts as we continue this journey.
Kevin
As you may know, I am taking two types of chemo. Oxiliplatin is one, and Xeloda is the other. Xeloda is taken orally in pill form. I take 3 in the morning and 3 at night. The last day I will have to take Xeloda is next Sunday (Feb 22), which will also be our 17th wedding anniversary. It's pretty safe to say I won't be up for much celebration, so we'll have to wait until some of the side effects start to wear off.
As one of the latest posts Roni made, we need my platelets to be high enough so that I can get the infusion tomorrow, so we seek your prayers that my blood levels will be good enough for the chemo treatment.
I also want to update you on my tumor markers that were taken during my last chemo infusion. After three rounds of chemo, my CEA dropped from 28.9 to 15.7. After the fourth round, it went back up to 16.5. Not a big increase, and my oncologist didn't seem that concerned. The normal range should be between 0 and 2.5, so it still has a ways to go. We're praying that the blood test taken tomorrow, will show another decrease. My oncologist also said that the chemo will probably continue working for up to a month after the treatment, so hopefully, the CEA will continue to drop.
So, what can we expect after the chemo is over? There are a couple of scenarios. The first week in March, I will get another PET/CT scan to see if the lymph nodes near the tumor "lights" up. If it does, that means that the tumor is still active, which will most likely mean another surgery. Because I will have to wait at least a month after chemo, the surgery won't take place any sooner than March 23rd. If the lymph nodes do not "light" up, that could mean that we just go back to watching and waiting. After the PET/CT scan, we'll meet with our specialist to see what he recommends.
We continue to both seek, and appreciate your prayers and thoughts as we continue this journey.
Kevin
Monday, February 02, 2009
Platelet count came up
I just heard from Kevin that his platelet count is up to 102 from 80 last time, so he's okay to proceed with today's chemo infusion. That's an answer to prayer, so for anyone who prayed, thank you!
Roni
Roni
Sunday, February 01, 2009
Four rounds down, two to go
Kevin has made it through four rounds of the infused chemo, Oxiliplatin. The good news is that the tumor markers dropped 48% after just three rounds, which indicates that the chemo is having the intended effect of shrinking the tumors and preventing new cancer cell growth. When Kevin goes in for round five tomorrow, they will first run blood tests to see what the tumor marker results are after round four. We pray the markers continue to drop.
While we’re grateful that the chemo is killing “bad” cells, good cells have come under fire as well. A cumulative result of the four infusions that Kevin has had so far is that his platelet count is down. If it goes too low, the doctor may want to hold off on the two remaining chemo rounds until Kevin body’s had a chance to recover a bit. Understandably, Kevin does not want to have any treatment delayed; he just wants to get these six rounds behind him so he can really recover. After each successive round, the peripheral neuropathy has lingered longer and now the fatigue is more intense and is not lifting between treatments as much as it did in December. Kevin also has a bad case of cabin fever, as it’s been too cold for him to even sit on the balcony. Spring – and the sixth round of chemo -- can’t come soon enough!
Please pray for protection of the healthy cells in Kevin’s body, especially his platelet count, and of course for the chemo to continue to be effective against the cancer.
Roni
While we’re grateful that the chemo is killing “bad” cells, good cells have come under fire as well. A cumulative result of the four infusions that Kevin has had so far is that his platelet count is down. If it goes too low, the doctor may want to hold off on the two remaining chemo rounds until Kevin body’s had a chance to recover a bit. Understandably, Kevin does not want to have any treatment delayed; he just wants to get these six rounds behind him so he can really recover. After each successive round, the peripheral neuropathy has lingered longer and now the fatigue is more intense and is not lifting between treatments as much as it did in December. Kevin also has a bad case of cabin fever, as it’s been too cold for him to even sit on the balcony. Spring – and the sixth round of chemo -- can’t come soon enough!
Please pray for protection of the healthy cells in Kevin’s body, especially his platelet count, and of course for the chemo to continue to be effective against the cancer.
Roni
Friday, January 16, 2009
Chemo Update - Halfway Point
Today is about my halfway point through my chemo treatment. So far I have had three infusions of Oxiliplatin and two round of oral Xeloda.
The bad news is the side effects. The Xeloda just makes me tired, but the Oxiliplatin is harsh. Right after the infusion, the neuropothy gets pretty bad. The main thing is the pain the cold causes. Eventually the side effects start to wane, but it takes awhile. As a matter of fact, it takes about 8 to 10 days before I can even start to drink anything that is cold.
The good news is that the chemo seems to be working. In December, my CEA tumor marker jumped up to 28.9 (should be between 0 - 2.5). That is a bit of jump from even a a few months ago when it was 10. Fortunately, after just two rounds of Oxiliplatin, that number dropped to 19.8. On Monday when I go in for my fourth infusion, we will have another blood test taken which will show what the new number is after 3 rounds of Oxiliplatin. (The blood test is taken before the infusion, so it only shows the results from the infusion two weeks before).
One of the difficulties I have had is getting some exercise. Because of the cold weather we have been experiencing here in NYC, I can not go outside for a walk. So, I am stuck inside. Because of this, and to help us have easier access to some exercise machines, we got a good deal from Bowflex which included a weight training machine and a Schwinn stationary bike. The bike includes the ability to electronically measure time, distance, calories burned, etc. Over the past week I have been able to set up these machines and yesterday even took a couple of 10 minutes "rides" on the bike. That was enough to wear me out, but that makes sense as I have not been getting ANY exercise for the past month or so. Hopefully this will help keep me in shape and ready to get back to "Life" after the chemo is done.
That is my update for now. Thank you all again for your prayers, thoughts, and support.
Kevin
The bad news is the side effects. The Xeloda just makes me tired, but the Oxiliplatin is harsh. Right after the infusion, the neuropothy gets pretty bad. The main thing is the pain the cold causes. Eventually the side effects start to wane, but it takes awhile. As a matter of fact, it takes about 8 to 10 days before I can even start to drink anything that is cold.
The good news is that the chemo seems to be working. In December, my CEA tumor marker jumped up to 28.9 (should be between 0 - 2.5). That is a bit of jump from even a a few months ago when it was 10. Fortunately, after just two rounds of Oxiliplatin, that number dropped to 19.8. On Monday when I go in for my fourth infusion, we will have another blood test taken which will show what the new number is after 3 rounds of Oxiliplatin. (The blood test is taken before the infusion, so it only shows the results from the infusion two weeks before).
One of the difficulties I have had is getting some exercise. Because of the cold weather we have been experiencing here in NYC, I can not go outside for a walk. So, I am stuck inside. Because of this, and to help us have easier access to some exercise machines, we got a good deal from Bowflex which included a weight training machine and a Schwinn stationary bike. The bike includes the ability to electronically measure time, distance, calories burned, etc. Over the past week I have been able to set up these machines and yesterday even took a couple of 10 minutes "rides" on the bike. That was enough to wear me out, but that makes sense as I have not been getting ANY exercise for the past month or so. Hopefully this will help keep me in shape and ready to get back to "Life" after the chemo is done.
That is my update for now. Thank you all again for your prayers, thoughts, and support.
Kevin
Friday, January 02, 2009
One Day at a Time
I know, I know... It's been a long time since I've posted anything, and everyone wants to know what the heck is going on. So here goes.
Since I last wrote, I had the PET Scan I told you about. The area where the tumor is lit up. That was a bad thing. Dr. Esquival recommended doing three months of chemo, using the Xelox protocol. That is Xeloda (which I did earlier this year) and Oxiliplatin, which I had when I was first diagnosed. The Xeloda just made me tired. The Oxiliplatin really does a number on me. Wipes me out for about a week. Dr. Ratner, my oncologist agreed with Dr. Esquival, and on December 8th, I started taking my Xeloda (which is in pill form) and went in for my first infusion of Oxiliplatin.
I take the Xeloda for two weeks, then take a week off. I have the infusions every two weeks. Monday, Jan 5th will be my third infusion.
One of the bad side effects of the Oxiliplatin is a bad reaction to cold. I cannot drink, eat or touch anything cold. If I go outside, I have to have my mouth covered or it starts to feel like my throat is closing up. Some of you may not think this is too bad, but think about it. You cannot drink ANYTHING cold. No cold water, juice, milk, soda... anything. If you do, it's like swallowing razor blades. And even when you are able to start tolerating drinks that are not hot, you can only take one swallow at a time. This makes keeping hydrated a bit tough.
You want something to eat? If you open the fridge, you can't touch anything in there without wearing gloves. You can't turn the cold water on to wash your hands. You have to wait until it heats up before you can put your hands under the water. After my second infusion, I couldn't even hold a metal fork because it felt like I was holding onto ice, and it started to burn. The main effect the cold has is neuropothy. You know when your arm or leg falls asleep and then the blood starts rushing back in and you get that pins and needles feeling? Well, multiply that by like 20 and that is what I have when it is cold. Even though it eventually wears off, I can still feel it in my left arm (where I get the infusion), and in my toes and fingers.
And of course, I am getting this done during the coldest part of the year. So far both days I had infusions it was below freezing outside. And since it is cold, I can't really go outside without really bundling up.
Fortunately, that is the worst of the side effects. There is usually a little nausea a few days after the infusion, but I have some meds to help with that. Oh, and I just feel tired all the time. Other than that, I'm feeling great. :-)
Now on to other news. The day before I found out I had to go back on chemo, I was told I was being laid off from Time Inc., where I had worked for the past 12 years. The bad economy had hit us hard and they were laying off A LOT of people, so it didn't hit me as much of a surprise. I was told that Dec 30th would be my last official day. Apart from not knowing what I will do next, it was really a blessing in disguise. I was able to work it out so that through all of this, we still have my income (thanks to disability and severance). And Roni still has her job there, so we are still covered with health insurance and all the other perks Time Inc. offers.
So that is where things stand for now. I do a lot of laying around watching TV as I don't have much energy to do much else most of the time.
I'm sorry I haven't done a better job of keeping up with this blog, but since I have more spare time, I'll try to post more often.
Thank you all for your prayers and well wishes.
Kevin
Since I last wrote, I had the PET Scan I told you about. The area where the tumor is lit up. That was a bad thing. Dr. Esquival recommended doing three months of chemo, using the Xelox protocol. That is Xeloda (which I did earlier this year) and Oxiliplatin, which I had when I was first diagnosed. The Xeloda just made me tired. The Oxiliplatin really does a number on me. Wipes me out for about a week. Dr. Ratner, my oncologist agreed with Dr. Esquival, and on December 8th, I started taking my Xeloda (which is in pill form) and went in for my first infusion of Oxiliplatin.
I take the Xeloda for two weeks, then take a week off. I have the infusions every two weeks. Monday, Jan 5th will be my third infusion.
One of the bad side effects of the Oxiliplatin is a bad reaction to cold. I cannot drink, eat or touch anything cold. If I go outside, I have to have my mouth covered or it starts to feel like my throat is closing up. Some of you may not think this is too bad, but think about it. You cannot drink ANYTHING cold. No cold water, juice, milk, soda... anything. If you do, it's like swallowing razor blades. And even when you are able to start tolerating drinks that are not hot, you can only take one swallow at a time. This makes keeping hydrated a bit tough.
You want something to eat? If you open the fridge, you can't touch anything in there without wearing gloves. You can't turn the cold water on to wash your hands. You have to wait until it heats up before you can put your hands under the water. After my second infusion, I couldn't even hold a metal fork because it felt like I was holding onto ice, and it started to burn. The main effect the cold has is neuropothy. You know when your arm or leg falls asleep and then the blood starts rushing back in and you get that pins and needles feeling? Well, multiply that by like 20 and that is what I have when it is cold. Even though it eventually wears off, I can still feel it in my left arm (where I get the infusion), and in my toes and fingers.
And of course, I am getting this done during the coldest part of the year. So far both days I had infusions it was below freezing outside. And since it is cold, I can't really go outside without really bundling up.
Fortunately, that is the worst of the side effects. There is usually a little nausea a few days after the infusion, but I have some meds to help with that. Oh, and I just feel tired all the time. Other than that, I'm feeling great. :-)
Now on to other news. The day before I found out I had to go back on chemo, I was told I was being laid off from Time Inc., where I had worked for the past 12 years. The bad economy had hit us hard and they were laying off A LOT of people, so it didn't hit me as much of a surprise. I was told that Dec 30th would be my last official day. Apart from not knowing what I will do next, it was really a blessing in disguise. I was able to work it out so that through all of this, we still have my income (thanks to disability and severance). And Roni still has her job there, so we are still covered with health insurance and all the other perks Time Inc. offers.
So that is where things stand for now. I do a lot of laying around watching TV as I don't have much energy to do much else most of the time.
I'm sorry I haven't done a better job of keeping up with this blog, but since I have more spare time, I'll try to post more often.
Thank you all for your prayers and well wishes.
Kevin
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