I started a new round of Xeloda last week, and had my first round of Oxaliplatin.
Last week I started my second round of Xeloda. As part of it, i have been taking Compazine as an anti nausea drug. So far the only side effect has been fatigue, which could be caused by the compazine, or also by a lower than normal blood count. I had my blood tested today and the white and red blood cell count was low, but not too low as to require medication. I will have my blood tested again next week after I finish this round of Xeloda.
I also started my first round of Oxaliplatin. This has certainly been rougher than the Xeloda. The treatment started by getting a blood test (see above), then meeting with the doctor. I told him that we will be meeting with Dr. Sugarbaker next Monday and they suggested chemo, but said it was up to him as to how long before the surgery. Dr. Ratner (the oncologist) said that I should get the surgery done as soon as possible, so we will cap the Oxaliplatin to two rounds. This means that the next one will be given on Jan 19th. This means that if Dr. Sugarbaker is able, I might have the surgery at the end of Jan or beginning of Feb. That would be great as it means I could be up and around by April.
Back to the chemo... After meeting with the doctor, I went back to the treatment room where they have about 5 large easy chairs. I was definitely the youngest person in there with others being in their 60s, 70s or 80s. The nurse put the IV in the back of my left hand and taped it to a board to keep it from moving around.
I then had some anti-nausea medicine, then the Oxaliplatin. The whole thing took about 2.5 hours. I brought my laptop and watched a move (Terminator 3) to kill the time. The side effects has been more prominent with this chemo than with the Xeloda. After the nurse took the IV out, my left forearm feels like small currents of electricity are going through it. Like pins and needles. Also, when I drink something, even at room temperature, my throat starts to feel like it is sore. I have to be careful not to drink or touch anything cold as it will increase these side effects. The nurse said they should last about 3 days.
Roni stayed with me during most of it, just to make sure I was OK. We then went home, and after eating lunch, I slept for about 2 hours.
So, all in all, it wasn't horrible, but it certainly wasn't pleasant. The good news was the doctor saying I would only need it one more time. Hopefully we'll have more good news after meeting with Dr. Sugarbaker next week.
Monday, December 29, 2003
Monday, December 22, 2003
Another CT Scan and an Appt
My third CT Scan, and a call from Dr. Sugarbaker's office...
Last Monday, I had my third CT scan in less than 11 weeks. The reason for this one is because the CT/PET scan I had a month or so ago was not what Dr. Sugarbaker needs, so I had to have another CT scan. This time with a lot more barium. (Yes, I am beginning to hate barium).
I made sure to leave with the films from the scan so I could send them to Dr. Sugarbaker the same day with the hopes of hearing from the doctor's office by Wednesday. I called on Wednesday to make sure they had the films and to tell them I would be faxing the report to them as well. Ilsa (Dr. Sugarbaker's wife and the office manager) informed me they did have the films and might be able to get back to us later that day, or Friday at the latest.
Wednesday came and went with no call, so we were hoping to hear something by Friday.
Friday afternoon, Roni called me and said that Ilsa called and told her that Dr. Sugarbaker said I was a good candidate for his treatment (hooray!). We were also told that we will probably be meeting for a consultation late Jan. with a surgery date after that. Ilsa said that because my lymph nodes tested positive, that Dr. Sugarbaker did want me to do some rounds of chemo before the surgery, so depending on how many rounds, the surgery could be anywhere from the beginning of March to the middle of April. Since Ilsa was swamped with work, she was not able to set up an appt. on Friday and that we would need to call back to schedule one.
So we finally got in touch with her today and scheduled an appointment with Dr. Sugarbaker for Jan 5th, at 2:30PM. That gives us two weeks to get all of our questions together.
Right now, I am very excited about this, but know as the date for the surgery draws near, that excitement will turn to trepidation and fear. I just have to look past that and know that a couple of months after the surgery, I'll be better than new.
For those who are praying, here is a list:
1) Pray for the right timing for the surgery
2) Pray that the ileostomy will be able to be reversed during the surgery
3) Pray for wisdom and steady hands for Dr. Sugarbaker and his team
4) Pray that our insurance will cover everything, without a fight.
5) Pray for Roni's work situation, that nothing that she is offered will interfere with the surgery and recovery period.
I am sure there are more, but that's a good start.
We'll try to keep the blog more up-to-date, especially as things seem to be moving much faster now.
Thank you again to everyone for your prayers, love and concern.
Last Monday, I had my third CT scan in less than 11 weeks. The reason for this one is because the CT/PET scan I had a month or so ago was not what Dr. Sugarbaker needs, so I had to have another CT scan. This time with a lot more barium. (Yes, I am beginning to hate barium).
I made sure to leave with the films from the scan so I could send them to Dr. Sugarbaker the same day with the hopes of hearing from the doctor's office by Wednesday. I called on Wednesday to make sure they had the films and to tell them I would be faxing the report to them as well. Ilsa (Dr. Sugarbaker's wife and the office manager) informed me they did have the films and might be able to get back to us later that day, or Friday at the latest.
Wednesday came and went with no call, so we were hoping to hear something by Friday.
Friday afternoon, Roni called me and said that Ilsa called and told her that Dr. Sugarbaker said I was a good candidate for his treatment (hooray!). We were also told that we will probably be meeting for a consultation late Jan. with a surgery date after that. Ilsa said that because my lymph nodes tested positive, that Dr. Sugarbaker did want me to do some rounds of chemo before the surgery, so depending on how many rounds, the surgery could be anywhere from the beginning of March to the middle of April. Since Ilsa was swamped with work, she was not able to set up an appt. on Friday and that we would need to call back to schedule one.
So we finally got in touch with her today and scheduled an appointment with Dr. Sugarbaker for Jan 5th, at 2:30PM. That gives us two weeks to get all of our questions together.
Right now, I am very excited about this, but know as the date for the surgery draws near, that excitement will turn to trepidation and fear. I just have to look past that and know that a couple of months after the surgery, I'll be better than new.
For those who are praying, here is a list:
1) Pray for the right timing for the surgery
2) Pray that the ileostomy will be able to be reversed during the surgery
3) Pray for wisdom and steady hands for Dr. Sugarbaker and his team
4) Pray that our insurance will cover everything, without a fight.
5) Pray for Roni's work situation, that nothing that she is offered will interfere with the surgery and recovery period.
I am sure there are more, but that's a good start.
We'll try to keep the blog more up-to-date, especially as things seem to be moving much faster now.
Thank you again to everyone for your prayers, love and concern.
Sunday, December 21, 2003
Fear and Courage
As it is the season of Hannukah, the Feast of Dedication, I have been thinking about fear and courage.
Fear is a constant companion to cancer patients and those who love them. When we were first told that I have cancer my first reaction was that we were going to fight back, and win. I wasn’t so much gripped with fear as maybe I was dealing with denial. I mean, after all, I didn’t feel sick. I didn’t feel like I had cancer. As a matter of fact, apart from healing from the surgery, I felt fine.
When I got home, my main concern was getting better, and to be honest, I was more upset with having an ileostomy then I was with having cancer. After all, the ileostomy was more “in my face” than the cancer was. It wasn’t until I got home from the hospital, and started doing some research did the fear start to creep in.
I knew that people were beating cancer, I forgot that some also died from cancer. It was because the cancer that I have is rare, that it was difficult to find information about it. I looked on some “cancer” web sites and started reading some stories of people that had cancer. The stories of those who survived were encouraging. The stories of those who lost loved ones to cancer, although very touching, were just plain scary. It was reading some of these that I started to think that I could die from the cancer I had. That is where the fear came in.
I have never really thought about dying before. I mean, I’ve thought about it, and quickly thought that I was still too young to die. Even riding a motorcycle didn’t put the fear of dying into me. But having cancer started to scare me. And what was worse my wife was more scared than I was. And that scared me even more.
It was only after I learned more about my particular strain of cancer, and started communicating with others that have gone through it, or had loved ones that did, that I started to feel more confident. Knowing that others have gone through treatment and recovery and are now doing well gave me the courage to meet this head on. I have the courage to do what is needed. To drink as much barium as I need to. To have whatever surgeries I need. To have as many shots and tests as is necessary. I’m not crazy about all of this, and it still scares me. To be honest, I hate it all, but it’s necessary to get better.
The fear is still there. It never left and it will probably also be lurking in the background for the rest of my life, but I refuse to let it control my life. I’m going to fight this cancer with all that I have. I’m going to survive it and live a normal, although different life. And that is what courage is, being afraid, but doing what is necessary.
Fear is a constant companion to cancer patients and those who love them. When we were first told that I have cancer my first reaction was that we were going to fight back, and win. I wasn’t so much gripped with fear as maybe I was dealing with denial. I mean, after all, I didn’t feel sick. I didn’t feel like I had cancer. As a matter of fact, apart from healing from the surgery, I felt fine.
When I got home, my main concern was getting better, and to be honest, I was more upset with having an ileostomy then I was with having cancer. After all, the ileostomy was more “in my face” than the cancer was. It wasn’t until I got home from the hospital, and started doing some research did the fear start to creep in.
I knew that people were beating cancer, I forgot that some also died from cancer. It was because the cancer that I have is rare, that it was difficult to find information about it. I looked on some “cancer” web sites and started reading some stories of people that had cancer. The stories of those who survived were encouraging. The stories of those who lost loved ones to cancer, although very touching, were just plain scary. It was reading some of these that I started to think that I could die from the cancer I had. That is where the fear came in.
I have never really thought about dying before. I mean, I’ve thought about it, and quickly thought that I was still too young to die. Even riding a motorcycle didn’t put the fear of dying into me. But having cancer started to scare me. And what was worse my wife was more scared than I was. And that scared me even more.
It was only after I learned more about my particular strain of cancer, and started communicating with others that have gone through it, or had loved ones that did, that I started to feel more confident. Knowing that others have gone through treatment and recovery and are now doing well gave me the courage to meet this head on. I have the courage to do what is needed. To drink as much barium as I need to. To have whatever surgeries I need. To have as many shots and tests as is necessary. I’m not crazy about all of this, and it still scares me. To be honest, I hate it all, but it’s necessary to get better.
The fear is still there. It never left and it will probably also be lurking in the background for the rest of my life, but I refuse to let it control my life. I’m going to fight this cancer with all that I have. I’m going to survive it and live a normal, although different life. And that is what courage is, being afraid, but doing what is necessary.
Saturday, December 06, 2003
Chemo Started
I have finally started my chemo treatment, and we are in the process of getting our documents to Dr. Sugarbaker.
On Tuesday, Dec 2nd, we met again with my oncologist, Dr. Ratner. He explained to us what was found on my CT/PET scan and suggested a chemotherapy regiment of Xeloda and Oxaliplatin (you can find out more about these drugs by clicking on their links). The Xeloda is an oral drug, taken twice a day for 14 days, then 7 days off. The Oxaliplatin is taken via IV once a day, every three weeks. I have already started the Xeloda (3 and a half days so far) with no side effects (thanks to G-d). Once I complete my first cycle of Xeloda, i will start on the Oxaliplatin.
On another front, we are trying to get everything we need to Dr. Paul Sugarbaker in Washington DC to see if he will take me on as a patient. This is the doctor who treats my form of cancer with surgery and heated chemo. It will require a lengthly surgery and hospital stay, but once it's done, all the cancer should be gone.
We sent everything to him this week, but found out that the CT/PET scan I had done a couple of weeks ago will not suffice for what Dr. Sugarbaker needs. This means that I will have to schedule another CT scan (mmm.. more barrium), and the get the results to him as soon as possible. Please pray that we can get this done soon.
If you want more info on Dr. Sugarbaker, you can find it here.
The hospital he works out of is Washington Hospital Center.
On Tuesday, Dec 2nd, we met again with my oncologist, Dr. Ratner. He explained to us what was found on my CT/PET scan and suggested a chemotherapy regiment of Xeloda and Oxaliplatin (you can find out more about these drugs by clicking on their links). The Xeloda is an oral drug, taken twice a day for 14 days, then 7 days off. The Oxaliplatin is taken via IV once a day, every three weeks. I have already started the Xeloda (3 and a half days so far) with no side effects (thanks to G-d). Once I complete my first cycle of Xeloda, i will start on the Oxaliplatin.
On another front, we are trying to get everything we need to Dr. Paul Sugarbaker in Washington DC to see if he will take me on as a patient. This is the doctor who treats my form of cancer with surgery and heated chemo. It will require a lengthly surgery and hospital stay, but once it's done, all the cancer should be gone.
We sent everything to him this week, but found out that the CT/PET scan I had done a couple of weeks ago will not suffice for what Dr. Sugarbaker needs. This means that I will have to schedule another CT scan (mmm.. more barrium), and the get the results to him as soon as possible. Please pray that we can get this done soon.
If you want more info on Dr. Sugarbaker, you can find it here.
The hospital he works out of is Washington Hospital Center.
Monday, December 01, 2003
Counting blessings and doing better
This is Roni. I realized when so many responded with concern about how overwhelmed I felt, that I neglected to follow up the last blog entry with an update stating that I'm much better.
More importantly, Kevin keeps getting stronger -- he walked 30 blocks on Friday, went to services then out for lunch with friends on Sat. and walked another 20 blocks on Sunday!
I wrote the last blog entry during a "low" point emotionally; I have since recovered my perspective. Life is just hard sometimes. All of us encounter daunting circumstances to which we must rise. Of course, "rising to the challenge" is much easier when others are there helping to lift you.
After day two of oncologist's-report-induced angst, I woke early Thursday morning with my mind whirling, so I tried to see if i might find some answers to our unanswered questions via Web research. I found some information that scared and depressed me even more, even though realized it might not apply to Kevin and i might very well be worrying needlessly.
I decided to call a couple in our congregation who have a lot of knowledge of doctors and the medical system. She's a nurse, and sadly, they've also had a lot of first-hand experiences with doctors through their own health challenges. I knew they would be able to advise us. But as they are currently dealing with their own medical issues I didn't want to disturb them on Thanksgiving, and planned to wait until Friday to call. I knew praying would help, but a cry of "G-d, isn't there anyone who can help us understand this?" was about all I could muster.
Within minutes of this cry/prayer, the phone rang. It was the husband of the couple that I did not want to disturb, calling us on Thanksgiving morning! This wonderful man took time to listen and give us compassionate counsel, insight into what had transpired with the doctor and good advice about how to proceed. By the time we got off the phone, peace was beginning to overtake angst.
Kevin, too, was a source of strength and comfort. I'm so glad we have granted one another permission to share our fears and "lows" with each other. When one of us has been low, the other has been strong and positive and able to encourage and reassure.
And then, it being Thanksgiving, we began to count our blessings. I have to admit, i feel a bit chagrined about making such a fuss about an interaction with a doctor when we have so much for which to be thankful. So many people have bad days. Some people's lives are just one bad day after another. Some people's days are intolerable. I was worried about laundry piling up, and some people don't have enough clothes to make a pile. We are blessed to have more good days than bad, and bad days that don't stay bad for long, because G-d always meets us where we are — often through you or as a result of your prayers.
So, yes, the process has been frustrating. Yet, we remember that so many don't have access to even the most basic medical care. We are blessed to HAVE access to excellent doctors, PLUS the health insurance that allows us the option of seeking additional opinions if necessary. Of course, the list of blessings goes on and on, chief among them the fact that Kevin IS alive! — having survived the surgery and the perforation when the doctors weren't certain he would.
Also, we've received some practical help just when we needed it. Besides the Thursday morning phone call, my sister-in-law spent the day with me on Friday — helping figure out menus that would meet Kevin's new nutritional needs and just being good company. And speaking of good company, Wed. and Sat. were spent in the company of caring friends as well.
Tonight Kevin read an entry about the importance of attitude from a devotional book written by a cancer survivor. No matter whether the reason for a bad day is "big" or "small" I'm learning jut how much of a difference attitude, prayer and relationships REALLY do make. Hopefully, I'll remember that going forward.
More importantly, Kevin keeps getting stronger -- he walked 30 blocks on Friday, went to services then out for lunch with friends on Sat. and walked another 20 blocks on Sunday!
I wrote the last blog entry during a "low" point emotionally; I have since recovered my perspective. Life is just hard sometimes. All of us encounter daunting circumstances to which we must rise. Of course, "rising to the challenge" is much easier when others are there helping to lift you.
After day two of oncologist's-report-induced angst, I woke early Thursday morning with my mind whirling, so I tried to see if i might find some answers to our unanswered questions via Web research. I found some information that scared and depressed me even more, even though realized it might not apply to Kevin and i might very well be worrying needlessly.
I decided to call a couple in our congregation who have a lot of knowledge of doctors and the medical system. She's a nurse, and sadly, they've also had a lot of first-hand experiences with doctors through their own health challenges. I knew they would be able to advise us. But as they are currently dealing with their own medical issues I didn't want to disturb them on Thanksgiving, and planned to wait until Friday to call. I knew praying would help, but a cry of "G-d, isn't there anyone who can help us understand this?" was about all I could muster.
Within minutes of this cry/prayer, the phone rang. It was the husband of the couple that I did not want to disturb, calling us on Thanksgiving morning! This wonderful man took time to listen and give us compassionate counsel, insight into what had transpired with the doctor and good advice about how to proceed. By the time we got off the phone, peace was beginning to overtake angst.
Kevin, too, was a source of strength and comfort. I'm so glad we have granted one another permission to share our fears and "lows" with each other. When one of us has been low, the other has been strong and positive and able to encourage and reassure.
And then, it being Thanksgiving, we began to count our blessings. I have to admit, i feel a bit chagrined about making such a fuss about an interaction with a doctor when we have so much for which to be thankful. So many people have bad days. Some people's lives are just one bad day after another. Some people's days are intolerable. I was worried about laundry piling up, and some people don't have enough clothes to make a pile. We are blessed to have more good days than bad, and bad days that don't stay bad for long, because G-d always meets us where we are — often through you or as a result of your prayers.
So, yes, the process has been frustrating. Yet, we remember that so many don't have access to even the most basic medical care. We are blessed to HAVE access to excellent doctors, PLUS the health insurance that allows us the option of seeking additional opinions if necessary. Of course, the list of blessings goes on and on, chief among them the fact that Kevin IS alive! — having survived the surgery and the perforation when the doctors weren't certain he would.
Also, we've received some practical help just when we needed it. Besides the Thursday morning phone call, my sister-in-law spent the day with me on Friday — helping figure out menus that would meet Kevin's new nutritional needs and just being good company. And speaking of good company, Wed. and Sat. were spent in the company of caring friends as well.
Tonight Kevin read an entry about the importance of attitude from a devotional book written by a cancer survivor. No matter whether the reason for a bad day is "big" or "small" I'm learning jut how much of a difference attitude, prayer and relationships REALLY do make. Hopefully, I'll remember that going forward.
Friday, November 28, 2003
Cancer Web Sites
You won't get cancer from these sites, but you will learn a lot from them.
Since I was found to have cancer about 6 weeks ago, Roni and I have been doing a lot of research on the subject. Here are some sites we found very informative.
Cancer.gov - This is the web site for the National Cancer Institute, which is part of the National Institute of Health.
American Cancer Society - This name of this site speak for itself. There is a lot of good information for health professionals, patients, survivors and friends and families of those with cancer.
PMP PALS - This site deals with cancers Rare Intestinal Cancers, Appendiceal Cancer and Pseudomyxoma Peritonei
Brian's Story - This site was started by the wife of someone who went through what I am going through. She has documented their journey, and also has a support page which I found to be very helpful.
Sugarbaker Oncology Associates - This is the web site of the doctor in DC that we are hoping to see soon. Hopefully he will say that I am a good candidate for his procedures. I have been in email contact with a few people that have been to see him and they have nothing but good things to say about him and his treatment. It doesn't sound like a piece of cake, but at least when you're done there, the cancer should be gone.
Cancer Care - A general site on cancer
ACOR - Association of Cancer Online Resources
ChemoCare - A site about Chemotherapy
Washington Health Center - If we go to Washington DC for treatment, this is the hospital where we will be.
I hope that you find these sites useful, and never need them for yourselves.
Since I was found to have cancer about 6 weeks ago, Roni and I have been doing a lot of research on the subject. Here are some sites we found very informative.
Cancer.gov - This is the web site for the National Cancer Institute, which is part of the National Institute of Health.
American Cancer Society - This name of this site speak for itself. There is a lot of good information for health professionals, patients, survivors and friends and families of those with cancer.
PMP PALS - This site deals with cancers Rare Intestinal Cancers, Appendiceal Cancer and Pseudomyxoma Peritonei
Brian's Story - This site was started by the wife of someone who went through what I am going through. She has documented their journey, and also has a support page which I found to be very helpful.
Sugarbaker Oncology Associates - This is the web site of the doctor in DC that we are hoping to see soon. Hopefully he will say that I am a good candidate for his procedures. I have been in email contact with a few people that have been to see him and they have nothing but good things to say about him and his treatment. It doesn't sound like a piece of cake, but at least when you're done there, the cancer should be gone.
Cancer Care - A general site on cancer
ACOR - Association of Cancer Online Resources
ChemoCare - A site about Chemotherapy
Washington Health Center - If we go to Washington DC for treatment, this is the hospital where we will be.
I hope that you find these sites useful, and never need them for yourselves.
Tuesday, November 25, 2003
What would we do without you?
This is Roni writing:
Without our faith -- and without the support of so many who help to bolster out faith when we're having a hard day -- I don't know how we'd get through those hard days. Not to mention that there'd be a lot more of them, if not for you.
And without being able to share the joys and challenges in the lives of so many we love -- helping us to lift our eyes from our own struggles -- the quality of our life would be tremendously diminished.
After a very frustrating (putting it mildly) phone call with our oncologist this morning (see separate entry if you've not yet heard about it), I sent out a sort of S.O.S. prayer request to Kevin's immediate family, my immediate and extended family and my congregation. I just returned home after an afternoon of errands to find many emails assuring us of prayer, love and support. It did so much to bolster me--more than I know how to express.
I keep saying that your prayers and kind and encouraging words help more than you can know. Now science is backing me up.
The following excerpts (in italics) are from an article entitled "God Help Us" printed in Time Out New York's Oct. 16-23, 2003 issue. (Thanks Marlene S. for the photocopy). The article is about the power of prayer and meditation in healing. It focuses in part on the findings of a recently completed study of Tibetan monks, which measured positive affects of meditation on the brain, shedding more light on the mind-body connection. I read a similar article based on the same study a few months ago in Time magazine.
Keep those cards, emails and phone messages coming!
The Time Out New York article quotes Veruschka Biddle, a psychologist who coauthored a book about the relationship between "Spiritual Healing" and healing from cancer. He says,
Cancer patients are so physically and emotionally drained, but when you work to bolster their sense of spirit, suddenly many of them are able to get stronger. [I knew that!] We have seen some dramatic improvements.
Prayer Works
Some people believe—and some research suggests—that praying for others works... '"There have been eight studies published on the effects of remote prayer, five of which showed statistically positive results," says Larry Dossey, a physician... The article goes on to describe how patients improved in a triple blind study (they didn't know they were being prayed for.)
We also know that sometimes people who are prayed for don't get better. It's not because the prayer was "not enough" or "not right." As Kevin often says, "G-d always answers prayer. 'No' is also an answer." We also know with perfect faith that all of G-d's works are done in faithfulness.
What answer we receive is in the hands of a sovereign, loving G-d. Praying is in our hands. We are so grateful to be in the prayers so many and also for the many ways that G-d has already graciously answered "yes."
Why You Shouldn't "Spare Us" from Your Problems or to quote 1,000 Maniacs, "Trouble me, disturb me with all your cares and your worries."
It's actually good for us! The article states:
...in the tests on the Tibetan monks, the greatest increases in left-prefrontal-cortex activity [the part of the brain associated with feelings of happiness, alertness and well-being] occurred when they performed a type of meditation in which they focus on compassion for others, which is akin to praying for the well-being of others. There were also strong results associated with meditation that focus on devotion.
Without our faith -- and without the support of so many who help to bolster out faith when we're having a hard day -- I don't know how we'd get through those hard days. Not to mention that there'd be a lot more of them, if not for you.
And without being able to share the joys and challenges in the lives of so many we love -- helping us to lift our eyes from our own struggles -- the quality of our life would be tremendously diminished.
After a very frustrating (putting it mildly) phone call with our oncologist this morning (see separate entry if you've not yet heard about it), I sent out a sort of S.O.S. prayer request to Kevin's immediate family, my immediate and extended family and my congregation. I just returned home after an afternoon of errands to find many emails assuring us of prayer, love and support. It did so much to bolster me--more than I know how to express.
I keep saying that your prayers and kind and encouraging words help more than you can know. Now science is backing me up.
The following excerpts (in italics) are from an article entitled "God Help Us" printed in Time Out New York's Oct. 16-23, 2003 issue. (Thanks Marlene S. for the photocopy). The article is about the power of prayer and meditation in healing. It focuses in part on the findings of a recently completed study of Tibetan monks, which measured positive affects of meditation on the brain, shedding more light on the mind-body connection. I read a similar article based on the same study a few months ago in Time magazine.
Keep those cards, emails and phone messages coming!
The Time Out New York article quotes Veruschka Biddle, a psychologist who coauthored a book about the relationship between "Spiritual Healing" and healing from cancer. He says,
Cancer patients are so physically and emotionally drained, but when you work to bolster their sense of spirit, suddenly many of them are able to get stronger. [I knew that!] We have seen some dramatic improvements.
Prayer Works
Some people believe—and some research suggests—that praying for others works... '"There have been eight studies published on the effects of remote prayer, five of which showed statistically positive results," says Larry Dossey, a physician... The article goes on to describe how patients improved in a triple blind study (they didn't know they were being prayed for.)
We also know that sometimes people who are prayed for don't get better. It's not because the prayer was "not enough" or "not right." As Kevin often says, "G-d always answers prayer. 'No' is also an answer." We also know with perfect faith that all of G-d's works are done in faithfulness.
What answer we receive is in the hands of a sovereign, loving G-d. Praying is in our hands. We are so grateful to be in the prayers so many and also for the many ways that G-d has already graciously answered "yes."
Why You Shouldn't "Spare Us" from Your Problems or to quote 1,000 Maniacs, "Trouble me, disturb me with all your cares and your worries."
It's actually good for us! The article states:
...in the tests on the Tibetan monks, the greatest increases in left-prefrontal-cortex activity [the part of the brain associated with feelings of happiness, alertness and well-being] occurred when they performed a type of meditation in which they focus on compassion for others, which is akin to praying for the well-being of others. There were also strong results associated with meditation that focus on devotion.
Sunday, November 23, 2003
Mmmm... Barrium
Kevin here with info on the PET and CT scans.
Well, the PET scan and CT scan are done. Fortunately, they weren't as bad as I thought, but I'll have to admit, barrium does not taste good.
The procedure started with a technician giving me a shot of a radio active "tracer" for the PET scan, then bringing me a big bottle of barrium to drink for the CT scan. He said I needed to drink as much as I could before the scan started. Well, that was about half of the bottle and luckily that was enough. After that, I changed into a hospital gown for the scan.
The technician who was doing the scan brought me into the room with the scanner and started explaining how things would work. I asked if I could use the restroom first, and while I was in there, I kept thinking, "man, that guy looks and sounds familiar." I go back to the room and say, "What's your name?" He replies, "Salvatore."
"Sal!" I say. "I'm Kevin, from NYC HOG! (for those who don't know, HOG stands for Harley Owners Group, and is a group of people that I ride with)" It takes a second before he recognizes me, then pulls out a picture of a few of us HOG members at a ride last year. I filled him in on my situation and he told me about how during the spring he was in an accident and took 10 weeks to get his bike fixed. Then 3 months later, someone stole it. He also told me about his new bike (Harley Road King). Got to admit, made me kinda jealous.
The scans took a couple of hours and I must admit was very relaxing. Even almost fell asleep, that is until the motor that moved the bed started up. That stupid motor kept me from dozing off cuz it started every 5 mins. :-(
Anyway, the scans were completed, and Roni and I had to run across town for an appointment with my ostomy nurse. I have been having problems with my ileostomy and asked her for advice and if we could try a different product than the one she sent me home with. She finally did give me a new type of bag to use, which so far is OK, but I will still be glad when I get this reversed and don't have it any longer.
The nurse also kept commenting on how well I looked, and said that when I was in the hospital, she was told about everything that was wrong with me, and thought to herself that she didn't want me as a patient because it would be too depressing. I guess she thought I didn't have that much of a change of making it, or coming out of it healthy as I am. I realized that I am too ornery to die as long as I have something to complain about. And believe me, when you are in hospital with an ileostomy, you have ALOT to complain about. :-)
Some other news, I have an appointment with a nutritionist next Tuesday. We need to find a good diet for me to be on which takes into account the cancer and ileostomy.
Next week, we need to start getting copies of my records to send to Dr. Sugarbaker in DC. If he does decide to take me on as a patient, I hope the surgery is done sooner than later. One, so I can get it out of the way, and get rid of the cancer, and two, chances are good that they will reverse the ileostomy at the same time. That would mean that when I leave the hospital from that surgery, I will be cancer free and ileostomy free. Life couldn't get much better than that right now. For those who want to know how to pray, that would be a good way.
Well, that's about all the news for now. We'll post more as we get it.
Thank you all again for everything.
Kevin
Well, the PET scan and CT scan are done. Fortunately, they weren't as bad as I thought, but I'll have to admit, barrium does not taste good.
The procedure started with a technician giving me a shot of a radio active "tracer" for the PET scan, then bringing me a big bottle of barrium to drink for the CT scan. He said I needed to drink as much as I could before the scan started. Well, that was about half of the bottle and luckily that was enough. After that, I changed into a hospital gown for the scan.
The technician who was doing the scan brought me into the room with the scanner and started explaining how things would work. I asked if I could use the restroom first, and while I was in there, I kept thinking, "man, that guy looks and sounds familiar." I go back to the room and say, "What's your name?" He replies, "Salvatore."
"Sal!" I say. "I'm Kevin, from NYC HOG! (for those who don't know, HOG stands for Harley Owners Group, and is a group of people that I ride with)" It takes a second before he recognizes me, then pulls out a picture of a few of us HOG members at a ride last year. I filled him in on my situation and he told me about how during the spring he was in an accident and took 10 weeks to get his bike fixed. Then 3 months later, someone stole it. He also told me about his new bike (Harley Road King). Got to admit, made me kinda jealous.
The scans took a couple of hours and I must admit was very relaxing. Even almost fell asleep, that is until the motor that moved the bed started up. That stupid motor kept me from dozing off cuz it started every 5 mins. :-(
Anyway, the scans were completed, and Roni and I had to run across town for an appointment with my ostomy nurse. I have been having problems with my ileostomy and asked her for advice and if we could try a different product than the one she sent me home with. She finally did give me a new type of bag to use, which so far is OK, but I will still be glad when I get this reversed and don't have it any longer.
The nurse also kept commenting on how well I looked, and said that when I was in the hospital, she was told about everything that was wrong with me, and thought to herself that she didn't want me as a patient because it would be too depressing. I guess she thought I didn't have that much of a change of making it, or coming out of it healthy as I am. I realized that I am too ornery to die as long as I have something to complain about. And believe me, when you are in hospital with an ileostomy, you have ALOT to complain about. :-)
Some other news, I have an appointment with a nutritionist next Tuesday. We need to find a good diet for me to be on which takes into account the cancer and ileostomy.
Next week, we need to start getting copies of my records to send to Dr. Sugarbaker in DC. If he does decide to take me on as a patient, I hope the surgery is done sooner than later. One, so I can get it out of the way, and get rid of the cancer, and two, chances are good that they will reverse the ileostomy at the same time. That would mean that when I leave the hospital from that surgery, I will be cancer free and ileostomy free. Life couldn't get much better than that right now. For those who want to know how to pray, that would be a good way.
Well, that's about all the news for now. We'll post more as we get it.
Thank you all again for everything.
Kevin
Tuesday, November 18, 2003
CT & PET scheduled for Friday
This is Roni writing
Kev's imaging is scheduled for late morning on this coming Friday, 11/21.
These baseline images will be used to determine if the cancer has grown since the surgery and if so at what rate. I really liked our oncologist's response when I asked him about the typical rate of growth for this rare strain of cancer. He said that since the information available is anecdotal and case studies only -- no systematic studies -- there is no "typical," but that statistics don't really matter anyway. What matters is the rate of growth in Kevin's body, and that's what these scans will determine.
When I pressed Dr. Ratner (oncologist) about prognosis, he replied "Kevin will write his own prognosis." He has already reached out to four other doctors to learn about the latest treatments. We may go to DC to confer with one of the country's handful of specialists on mucinous adenocarcinoma; we will be talking to Dr. Ratner about that possibility this week.
Next step -- finding a nutritionist who can help design a cancer-fighting, immune system-boosting diet that will take the ileostomy into consideration, one that can also work with us to modify the diet as needed for chemo treatment.
This past Sat., Kevin went to his first Shabbat service since the surgery. It was a small service for members only in the rabbi's home ( the place we've been renting was not available this past Sat.). We walked in late (challenging morning), and they stopped the service and everyone applauded. That felt good! We continue to be blessed and humbled by all of the love and kindness so many are giving -- H.O.G. buddies (Harley Owners Group), our rabbi and rebbetzin who are always just a phone call away, the rest of our loving congregation, caring co-workers and of course family. Kev's parents are here now; though a low key visit -- no sight-seeing this time -- it's been nice to laugh, watch movies, show pictures, grocery shop :-) etc. with them.
Kevin goes back to work Wednesday. Not sure if he'll last a full day, but I think it will be good to get back to a more normal schedule and get out of the apartment! Since the treatment plan is still up in the air, for now I'll be looking for temp work and pursuing a business idea.
And that's all the news that's fit to type for now...
Kev's imaging is scheduled for late morning on this coming Friday, 11/21.
These baseline images will be used to determine if the cancer has grown since the surgery and if so at what rate. I really liked our oncologist's response when I asked him about the typical rate of growth for this rare strain of cancer. He said that since the information available is anecdotal and case studies only -- no systematic studies -- there is no "typical," but that statistics don't really matter anyway. What matters is the rate of growth in Kevin's body, and that's what these scans will determine.
When I pressed Dr. Ratner (oncologist) about prognosis, he replied "Kevin will write his own prognosis." He has already reached out to four other doctors to learn about the latest treatments. We may go to DC to confer with one of the country's handful of specialists on mucinous adenocarcinoma; we will be talking to Dr. Ratner about that possibility this week.
Next step -- finding a nutritionist who can help design a cancer-fighting, immune system-boosting diet that will take the ileostomy into consideration, one that can also work with us to modify the diet as needed for chemo treatment.
This past Sat., Kevin went to his first Shabbat service since the surgery. It was a small service for members only in the rabbi's home ( the place we've been renting was not available this past Sat.). We walked in late (challenging morning), and they stopped the service and everyone applauded. That felt good! We continue to be blessed and humbled by all of the love and kindness so many are giving -- H.O.G. buddies (Harley Owners Group), our rabbi and rebbetzin who are always just a phone call away, the rest of our loving congregation, caring co-workers and of course family. Kev's parents are here now; though a low key visit -- no sight-seeing this time -- it's been nice to laugh, watch movies, show pictures, grocery shop :-) etc. with them.
Kevin goes back to work Wednesday. Not sure if he'll last a full day, but I think it will be good to get back to a more normal schedule and get out of the apartment! Since the treatment plan is still up in the air, for now I'll be looking for temp work and pursuing a business idea.
And that's all the news that's fit to type for now...
Friday, November 14, 2003
New Doctor. More Tests.
We met with a new oncologist who we will work with to determine my treatment.
This Monday, Roni and I had an appointment with a Dr. Lynn Ratner (Dr. Ratner is a male doctor). Dr. Richard Warner, the Carcinoid specialist we saw a couple of weeks ago, referred him to us. He has been treating cancer for many years and although he has not dealt with my particular cancer in a few years, he has kept up with the latest developments. He is even willing to reach out to other oncologists and specialists for help. An example of this is while we were meeting with him, we asked about a form of treatment that is being performed by a Dr. Paul Sugarbaker in Washington DC. He said that he had heard of the treatment, but needs to get more information before he can suggest it for my situation. He then looked through his directory and found Dr. Sugarbaker’s phone number and placed a call. Dr. Sugarbaker was not available, so he was told that one of his associates would call him back later. (Later that day, Dr. Ratner called back to inform us that he was able to talk to the doctor in DC, and they would be willing to see me. I am not sure if this is necessary or not, but to know that this route is available is a good thing.)
Before any treatment can be done, we first need to get a new CT Scan done that will be our baseline for determining my treatment. For those who don’t know CT stands for Computed Tomography Imaging (don’t ask me why they don’t call it a CTI scan.) For those who don’t know what this is, it is like a high tech x-ray that scans your body in sections and is able to create a 3D view of the area they are scanning. The problem is that you need to be given a “contrast agent”. Usually this is given orally and consists of drinking about 36 to 48 oz of the agent. When I had this done during my time in the emergency room, the contrast agent was given to me through a NG tube (if you can avoid it, never get a NG tube) so I didn’t have to drink it. Next time, I would rather drink it. If you would like more info on CT scans, you can find it here.
Apart from a CT scan, I will also have to have a PET scan done. PET stand for Positron Emission Tomography. (You can find more info on PET scans here,) Instead of a “contrast agent”, a PET scan uses a “tracer” which is injected (great, more needles).
As mentioned above, these two tests will be used to determine the next steps in my treatment. So right, now this is about all we know. Not as much as I would like, but we are on our way. (BTW-These tests have not been scheduled yet, but hopefully will be next week.)
Another thing we keep hearing is that studies show that having a positive attitude goes a long way to recovery. So I am trying to keep a positive attitude that I will beat this and be cancer free after my treatment. And as for something to look forward to, Roni and I are planning a trip after I am better. We will be going to the Badlands of South Dakota, somewhere I have wanted to visit for awhile now. I have always wanted to see Mt. Rushmore, Devil’s Tower, the site of Custer’s last stand, the Badlands, and of course, Deadwood, SD, the town where Wild Bill Hickock lived and was killed. Our current plan is to fly to Rapid City, SD and rent a Harley, find a nice place to stay and spend about a week riding, site-seeing and relaxing.
This Monday, Roni and I had an appointment with a Dr. Lynn Ratner (Dr. Ratner is a male doctor). Dr. Richard Warner, the Carcinoid specialist we saw a couple of weeks ago, referred him to us. He has been treating cancer for many years and although he has not dealt with my particular cancer in a few years, he has kept up with the latest developments. He is even willing to reach out to other oncologists and specialists for help. An example of this is while we were meeting with him, we asked about a form of treatment that is being performed by a Dr. Paul Sugarbaker in Washington DC. He said that he had heard of the treatment, but needs to get more information before he can suggest it for my situation. He then looked through his directory and found Dr. Sugarbaker’s phone number and placed a call. Dr. Sugarbaker was not available, so he was told that one of his associates would call him back later. (Later that day, Dr. Ratner called back to inform us that he was able to talk to the doctor in DC, and they would be willing to see me. I am not sure if this is necessary or not, but to know that this route is available is a good thing.)
Before any treatment can be done, we first need to get a new CT Scan done that will be our baseline for determining my treatment. For those who don’t know CT stands for Computed Tomography Imaging (don’t ask me why they don’t call it a CTI scan.) For those who don’t know what this is, it is like a high tech x-ray that scans your body in sections and is able to create a 3D view of the area they are scanning. The problem is that you need to be given a “contrast agent”. Usually this is given orally and consists of drinking about 36 to 48 oz of the agent. When I had this done during my time in the emergency room, the contrast agent was given to me through a NG tube (if you can avoid it, never get a NG tube) so I didn’t have to drink it. Next time, I would rather drink it. If you would like more info on CT scans, you can find it here.
Apart from a CT scan, I will also have to have a PET scan done. PET stand for Positron Emission Tomography. (You can find more info on PET scans here,) Instead of a “contrast agent”, a PET scan uses a “tracer” which is injected (great, more needles).
As mentioned above, these two tests will be used to determine the next steps in my treatment. So right, now this is about all we know. Not as much as I would like, but we are on our way. (BTW-These tests have not been scheduled yet, but hopefully will be next week.)
Another thing we keep hearing is that studies show that having a positive attitude goes a long way to recovery. So I am trying to keep a positive attitude that I will beat this and be cancer free after my treatment. And as for something to look forward to, Roni and I are planning a trip after I am better. We will be going to the Badlands of South Dakota, somewhere I have wanted to visit for awhile now. I have always wanted to see Mt. Rushmore, Devil’s Tower, the site of Custer’s last stand, the Badlands, and of course, Deadwood, SD, the town where Wild Bill Hickock lived and was killed. Our current plan is to fly to Rapid City, SD and rent a Harley, find a nice place to stay and spend about a week riding, site-seeing and relaxing.
Saturday, November 08, 2003
Finally! Confirmed diagnosis -- mucinous adenocarcinoma of the cecum
Described on a survivor's website as "one of the 'nicest' types of cancer a person can get. ...it is not a typical "invasive" cancer.
Roni writing:
We got a call yesterday afternoon from the 2nd opinion specialist who told me the diagnosis: mucinous adenocarcinoma of the cecum. From what we've learned in a very short time this is much better news than garden variety colon cancer! As we understand so far (just a few hours of Web research) this is a very rare (and "friendlier") strain of colon cancer. Leave to Kevin to have something “special.” But now that we have a sense of the enemy* we can prepare to fight it. We'll know more, of course, after we see the oncologist (Monday).
The doctor had his pathologist review all of the pathology slides done at the hospital, plus stain for himself some blank tissue slides they provided, and the results are conclusive. Plus, what we've learned about this disease in just a few hours fits with the symptoms and with all we've learned from doctors so far. Also, the fact that this is a rare disease explains the puzzled looks on the doctor's faces, why one doctor would examine him and then come back with five more doctors and why I got vague answers to specific questions...
But most encouraging (in a relative sort of way) is what we've read so far about how the disease acts and progresses.
Best layman’s explanation I have found follows:
_________________________________________________
From “Brian’s Story” (http://cyberhideaway.com/BriansStory/ and http://cyberhideaway.com/BriansStory/updates2.html)
“...there isn't a lot of information out there on the net about this particular type of cancer. We are not doctors, and we don't have the medical knowledge to explain fully what many of the things mean. The treatments that Brian is going through are fairly new [this was in 1997], and we have discovered that not many doctors out there are even aware of them.
This type of cancer, as we were told, is one of the "nicest" types of cancer a person can get. ...it is not a typical "invasive" cancer.
When we asked the doctors, they went on to explain to us that this type of cancer is a rare strain of colon cancer. However, where colon cancer is invasive and will replace a good cell with a bad cell, this cancer is not that way. The type that Brian has does not replace a good cell with a bad cell. Instead, the bad cells make the gelatinous goop. Then the goop attaches itself to organs. If the goop is left inside, it will eventually "smoother" an organ. [This is what happened to Kevin’s appendix. The tumor surrounded it, and the appendix “disappeared.” If you’re going to have an organ swallowed, it’s good that it be one you don’t really use anyway.] Now, we were also told that another "nice" thing about this cancer is that it grows very slowly.” [This explains why the oncologist we saw in the hospital said both "colon cancer" and "slow growing" -- two phrases that don't normally go together.]
__________________________________________________________________________
*My Prayer During Cancer
Lord, I have just received the diagnosis of cancer.
Still my anxious heart as I seek to understand why.
Teach me to transform my suffering into growth,
my great fear of tomorrow into faith in your presence,
my tears into understanding,
my discouragement into courage,
my anger into forgiveness,
my bitterness into acceptance,
my experience with cancer into my testimony,
my crisis into a platform on which I can learn to help others.
God grant that one day I can embrace this time
as my friend, and not as my enemy.
~ Judy Kneece, RN, OCN
What Cancer Cannot Do:
Cancer is so limited . . .
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the Spirit.
It cannot lessen the power of the resurrection.
~ Anonymous
Serenity Prayer
God, Grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.
Living ONE DAY AT A TIME; Enjoying one moment at a time; Accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is, not as I would have it.
Trusting that He will make things right if I surrender to His Will;
That I may be reasonably happy in this life, and supremely happy with Him forever in the next.
Amen
~ Reinhold Neibuhr
Romans 8:15-39
Roni writing:
We got a call yesterday afternoon from the 2nd opinion specialist who told me the diagnosis: mucinous adenocarcinoma of the cecum. From what we've learned in a very short time this is much better news than garden variety colon cancer! As we understand so far (just a few hours of Web research) this is a very rare (and "friendlier") strain of colon cancer. Leave to Kevin to have something “special.” But now that we have a sense of the enemy* we can prepare to fight it. We'll know more, of course, after we see the oncologist (Monday).
The doctor had his pathologist review all of the pathology slides done at the hospital, plus stain for himself some blank tissue slides they provided, and the results are conclusive. Plus, what we've learned about this disease in just a few hours fits with the symptoms and with all we've learned from doctors so far. Also, the fact that this is a rare disease explains the puzzled looks on the doctor's faces, why one doctor would examine him and then come back with five more doctors and why I got vague answers to specific questions...
But most encouraging (in a relative sort of way) is what we've read so far about how the disease acts and progresses.
Best layman’s explanation I have found follows:
_________________________________________________
From “Brian’s Story” (http://cyberhideaway.com/BriansStory/ and http://cyberhideaway.com/BriansStory/updates2.html)
“...there isn't a lot of information out there on the net about this particular type of cancer. We are not doctors, and we don't have the medical knowledge to explain fully what many of the things mean. The treatments that Brian is going through are fairly new [this was in 1997], and we have discovered that not many doctors out there are even aware of them.
This type of cancer, as we were told, is one of the "nicest" types of cancer a person can get. ...it is not a typical "invasive" cancer.
When we asked the doctors, they went on to explain to us that this type of cancer is a rare strain of colon cancer. However, where colon cancer is invasive and will replace a good cell with a bad cell, this cancer is not that way. The type that Brian has does not replace a good cell with a bad cell. Instead, the bad cells make the gelatinous goop. Then the goop attaches itself to organs. If the goop is left inside, it will eventually "smoother" an organ. [This is what happened to Kevin’s appendix. The tumor surrounded it, and the appendix “disappeared.” If you’re going to have an organ swallowed, it’s good that it be one you don’t really use anyway.] Now, we were also told that another "nice" thing about this cancer is that it grows very slowly.” [This explains why the oncologist we saw in the hospital said both "colon cancer" and "slow growing" -- two phrases that don't normally go together.]
__________________________________________________________________________
*My Prayer During Cancer
Lord, I have just received the diagnosis of cancer.
Still my anxious heart as I seek to understand why.
Teach me to transform my suffering into growth,
my great fear of tomorrow into faith in your presence,
my tears into understanding,
my discouragement into courage,
my anger into forgiveness,
my bitterness into acceptance,
my experience with cancer into my testimony,
my crisis into a platform on which I can learn to help others.
God grant that one day I can embrace this time
as my friend, and not as my enemy.
~ Judy Kneece, RN, OCN
What Cancer Cannot Do:
Cancer is so limited . . .
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the Spirit.
It cannot lessen the power of the resurrection.
~ Anonymous
Serenity Prayer
God, Grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.
Living ONE DAY AT A TIME; Enjoying one moment at a time; Accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is, not as I would have it.
Trusting that He will make things right if I surrender to His Will;
That I may be reasonably happy in this life, and supremely happy with Him forever in the next.
Amen
~ Reinhold Neibuhr
Romans 8:15-39
Tuesday, November 04, 2003
Visits and phone calls
Kevin feels up to about one visit and/or phone call per day
Kevin has a week or two before he starts working from home, and then hopes to get back to the office part time. He is still tired enough that he's not yet bored, but still would like to re-connect to the outside world with visitors.
If you'd like to visit give us a call first at home* so we don't end up with multiple visits on one day. You'll likely get the machine (we are screening calls). Leave a message; if we're not resting (Roni has a flu/virus, so is resting too), we'll pick up.
If you want to chat -- phone visit (might be a good idea if you don't want to catch Roni's bug!) -- we'll pick up if we're not already maxed out on calls/visits. If we don't pick up, we'll try to get back to you within a few days.
Visits and calls are a great pick-me-up, but they also take energy, so bear with us as Kevin seeks to strike the right balance.
Also, Kevin's parents are coming to visit from 11/14 to 11/18, so he'll most likely not be up for other visitors on those dates.
*Our new address is 175 E. 96th St. (between 3rd and Lex in Manhattan), Apt. 9H. New phone: 212-410-5196.
Kevin has a week or two before he starts working from home, and then hopes to get back to the office part time. He is still tired enough that he's not yet bored, but still would like to re-connect to the outside world with visitors.
If you'd like to visit give us a call first at home* so we don't end up with multiple visits on one day. You'll likely get the machine (we are screening calls). Leave a message; if we're not resting (Roni has a flu/virus, so is resting too), we'll pick up.
If you want to chat -- phone visit (might be a good idea if you don't want to catch Roni's bug!) -- we'll pick up if we're not already maxed out on calls/visits. If we don't pick up, we'll try to get back to you within a few days.
Visits and calls are a great pick-me-up, but they also take energy, so bear with us as Kevin seeks to strike the right balance.
Also, Kevin's parents are coming to visit from 11/14 to 11/18, so he'll most likely not be up for other visitors on those dates.
*Our new address is 175 E. 96th St. (between 3rd and Lex in Manhattan), Apt. 9H. New phone: 212-410-5196.
Monday, November 03, 2003
We haven't called or emailed back because...
...last week was a very full week:
• 2 doctor's visits
• my parents here with us for two days to help get us better "moved in" to the apartment (Thanks!!)
• a visit from my brother and his wife on Friday evening (wonderful to see you!)
• I (Roni) got the cold/flu achy thing that has been going around
Just wanted to let everyone know that though you haven't received a response from us, your calls and emails of love, support, encouragement, offers of help and places to stay in Hawaii, etc. continue to mean so much. Knowing we have so many people who care and are praying really strengthens us.
Thanks!
Love, Roni
• 2 doctor's visits
• my parents here with us for two days to help get us better "moved in" to the apartment (Thanks!!)
• a visit from my brother and his wife on Friday evening (wonderful to see you!)
• I (Roni) got the cold/flu achy thing that has been going around
Just wanted to let everyone know that though you haven't received a response from us, your calls and emails of love, support, encouragement, offers of help and places to stay in Hawaii, etc. continue to mean so much. Knowing we have so many people who care and are praying really strengthens us.
Thanks!
Love, Roni
Diagnosis is Uncertain
When we saw the specialist on Thurs., he said that some of what we were told in the hospital does not appear in the pathology reports.
Fortunately, this specialist who "squeezed us in" to see us this early knows the questions to ask. Also, he with have his own pathologist review all of the slides and stain some blank ones. He is also doing blood tests [Kevin complained they took 6 pints! ;-) ] and other lab work. We should have all of the results in about 2 weeks.
In the mean time, Kevin continues to heal quickly from the surgery. We walked the 8 blocks to the doctors office today (for the blood work), then a few blocks to a diner for breakfast (Kev had to fast prior to blood work) and then on home. Of course, kevin is now sleeping to recover from all the exertion, but he's doing great!
By the time Kevin is strong enough to start chemo, this specialist should have gotten to the bottom of just what type of cancer (s?) we're dealing with, and he has recommended a top oncologist.
In the meantime, we continue to be so grateful for all of the emails and calls of support.
Fortunately, this specialist who "squeezed us in" to see us this early knows the questions to ask. Also, he with have his own pathologist review all of the slides and stain some blank ones. He is also doing blood tests [Kevin complained they took 6 pints! ;-) ] and other lab work. We should have all of the results in about 2 weeks.
In the mean time, Kevin continues to heal quickly from the surgery. We walked the 8 blocks to the doctors office today (for the blood work), then a few blocks to a diner for breakfast (Kev had to fast prior to blood work) and then on home. Of course, kevin is now sleeping to recover from all the exertion, but he's doing great!
By the time Kevin is strong enough to start chemo, this specialist should have gotten to the bottom of just what type of cancer (s?) we're dealing with, and he has recommended a top oncologist.
In the meantime, we continue to be so grateful for all of the emails and calls of support.
Sunday, November 02, 2003
Good News and No News
After meeting with the doctors this week, we got some good news and some confusing news...
On Tues of this week, we met with the surgeon who cut me open and most likely also saved my life. He said that he was very impressed with how well I was healing and that some people would still be in hospital. That was the good news.
We also asked him again about what type of cancer he found and he reiterated that some of it was carcinoid, but that there was also another type. As he is not a oncologist, he was hesitant to say anymore.
On Tues of this week, we met with the surgeon who cut me open and most likely also saved my life. He said that he was very impressed with how well I was healing and that some people would still be in hospital. That was the good news.
We also asked him again about what type of cancer he found and he reiterated that some of it was carcinoid, but that there was also another type. As he is not a oncologist, he was hesitant to say anymore.
Tuesday, October 28, 2003
Update before Dr.'s Visit
This is Kevin writing.
First of all, I would like to say a great big thank you to all of you. The love and concern shown to Roni and me during this ordeal has been overwhelming. I am truly grateful to have you all on my side.
As for me, I am still recovering from the surgery. I would like to think that I should be more healed than I am, but I just remind myself that they did cut me open and dug around my guts for 3 hours. I am not sure how long the recovery is supposed to take, hopefully the Dr. can let us know more tomorrow when we see him. I am also looking forward to being reassured that the ileostomy is only temporary. I hate this thing. :-(
I am also hoping that the Dr. will remove the sutures tomorrow. They are really starting to annoy me and are itching.
On Thursday, we go see a Carcinoid Cancer specialist for a second opinion. Once we talk to him and then again to the actual Oncologist who will be doing the work, we will hopefully have a better idea of the treatment that I will have to undergo.
As for me, I am doing OK. Some days are better than others. Some days are scary and some days I feel invincible. Today wasn't such a good day. I'll just be glad to start getting some info from the doctors and learning what the next steps will be.
I have also not been sleeping well. Waking a couple of times during the night and having a hard time getting back to sleep. This also makes me tired during the day, when I should be up and moving around.
Well, it is about 10 PM and I am getting tired. I will do my best to be as honest as I can on this blog to let you all know what is going on. I am not good at sharing my feelings (just ask Roni) but this experience has begun to help me learn. I pray to G-d that it will also help me be a better person.
Thank you again for all of your love, concern and prayers. We'll post another update after we meet with the doctors.
First of all, I would like to say a great big thank you to all of you. The love and concern shown to Roni and me during this ordeal has been overwhelming. I am truly grateful to have you all on my side.
As for me, I am still recovering from the surgery. I would like to think that I should be more healed than I am, but I just remind myself that they did cut me open and dug around my guts for 3 hours. I am not sure how long the recovery is supposed to take, hopefully the Dr. can let us know more tomorrow when we see him. I am also looking forward to being reassured that the ileostomy is only temporary. I hate this thing. :-(
I am also hoping that the Dr. will remove the sutures tomorrow. They are really starting to annoy me and are itching.
On Thursday, we go see a Carcinoid Cancer specialist for a second opinion. Once we talk to him and then again to the actual Oncologist who will be doing the work, we will hopefully have a better idea of the treatment that I will have to undergo.
As for me, I am doing OK. Some days are better than others. Some days are scary and some days I feel invincible. Today wasn't such a good day. I'll just be glad to start getting some info from the doctors and learning what the next steps will be.
I have also not been sleeping well. Waking a couple of times during the night and having a hard time getting back to sleep. This also makes me tired during the day, when I should be up and moving around.
Well, it is about 10 PM and I am getting tired. I will do my best to be as honest as I can on this blog to let you all know what is going on. I am not good at sharing my feelings (just ask Roni) but this experience has begun to help me learn. I pray to G-d that it will also help me be a better person.
Thank you again for all of your love, concern and prayers. We'll post another update after we meet with the doctors.
Saturday, October 18, 2003
Pathology Report 10/17/03
We got the results, and...
Kevin's pathology report was not the news we had wanted. The surgeon informed us this morning that the tumor was malignant.
Met with the oncologist at about 3:00 p.m.
It is not felt that the tumor is so aggressive as to need immediate chemo. The initial plan is to have re-connective/repair surgery (he has a temporary iliostomy) in about five weeks, with an additional two weeks or so to recover enough from that - then they can do a base line CT before beginning chemo. Chemo is to be outpatient, of a type that should not cause nausea, may cause some anemia which can be addressed with meds. Probably not lose his hair - though this is not a big deal for Kevin since nature has already been at work in that regard :-). He hould be able to return to work - with adaptations in schedule - during the chemo process.
The oncologist is highly recommended and seems very qualified, but we will still be prudent and seek a second opinion and also check out all info and options.
Kevin has begun to eat and tolerate "solid" (soft) food. Able to walk some and can pull himself up into a sitting position, but is weak and tires easily. Pain meds have not helped him get as much rest or sleep as he'd like or needs.
The most immediate prayer request: His IV's are causing a lot of discomfort which contributes to his lack of rest - feels that a good nights' sleep would be most helpful!
Kevin's pathology report was not the news we had wanted. The surgeon informed us this morning that the tumor was malignant.
Met with the oncologist at about 3:00 p.m.
It is not felt that the tumor is so aggressive as to need immediate chemo. The initial plan is to have re-connective/repair surgery (he has a temporary iliostomy) in about five weeks, with an additional two weeks or so to recover enough from that - then they can do a base line CT before beginning chemo. Chemo is to be outpatient, of a type that should not cause nausea, may cause some anemia which can be addressed with meds. Probably not lose his hair - though this is not a big deal for Kevin since nature has already been at work in that regard :-). He hould be able to return to work - with adaptations in schedule - during the chemo process.
The oncologist is highly recommended and seems very qualified, but we will still be prudent and seek a second opinion and also check out all info and options.
Kevin has begun to eat and tolerate "solid" (soft) food. Able to walk some and can pull himself up into a sitting position, but is weak and tires easily. Pain meds have not helped him get as much rest or sleep as he'd like or needs.
The most immediate prayer request: His IV's are causing a lot of discomfort which contributes to his lack of rest - feels that a good nights' sleep would be most helpful!
Friday, October 17, 2003
When will he leave the hospital?
Kev came home Monday, 10/20 and is recuperating at home with "Nurse Roni."
10/14
Since he won't be discharged until he's handling solid food, and he's not yet handling liquids, I can't imagine he'll be ready to come home before Friday. But then, tomorrow is another day, and he could really turn around quickly.
________
10/13
Kevin's digestive track has to start working. Once he starts digesting the clear liquids on his own (started today) he will progress to solids. They will get him moving about more today to help "reset" everything.
Once his stomach, intestines, etc. start working, they'll send him home with the bag, having given him instructions on emptying it, etc. Apparently people lead very active lives with these things. Still we're glad his is temporary.
10/14
Since he won't be discharged until he's handling solid food, and he's not yet handling liquids, I can't imagine he'll be ready to come home before Friday. But then, tomorrow is another day, and he could really turn around quickly.
________
10/13
Kevin's digestive track has to start working. Once he starts digesting the clear liquids on his own (started today) he will progress to solids. They will get him moving about more today to help "reset" everything.
Once his stomach, intestines, etc. start working, they'll send him home with the bag, having given him instructions on emptying it, etc. Apparently people lead very active lives with these things. Still we're glad his is temporary.
Thursday, October 16, 2003
What is the prognosis?
10/28
We'll know more after meeting with the surgeon today, and one of the world-renowned carcinoid specialists -- Dr. Richard Warner -- on Thursday. Read more for an amazing story.
Amazing story: After speaking with the oncologist when Kev was in the hospital, i was still left with a lot of troubling questions. The pamphlet about colon rectal cancer he sent me home with stated on page six (of 30 some) that carcinoids were another type of colon cancer, were extremely rare and therefore "not covered in this document."
ARGGHH! I immediately logged onto the Web site of the American Cancer Society, which directed me to the Web site for the Carcinoid Foundation where i was able to learn that this is an extremely rare condition that is also very individualized in its manifestation, therefore highly individualized treatment is called for. The Foundations Web site included an extremely helpful paper written for laymen by a Dr. Richard Warner (medical director of the foundation) who is associated with Mt. Sinai Hospital (just blocks away from our new apartment). Originally, we assumed we would go to Sloan-Kettering for a second opinion, but after reading from and about this doctor, I said to myself, "We have to get this doctor!" (Turns out, carcinoid cancer is so rare, and he is such an authority that when Sloan-Kettering gets cases, they confer with him!) This was on the Friday before Kevin came home.
The following Sunday evening my rebbetzin (rabbi's wife) came to help get the apartment a little more ready for Kev's home-coming. I mentioned the above to her at which point she did a double-take and asked, "Did you say Carcinoid Foundation?" Turns out that she knew (I didn't) that a congregant at our synagogue just happens to be the president (for the past 25 years!) of the Carcinoid Foundation.
She called him the next morning, and as Kevin was checking out of the hospital, this fellow congregant called me to explain that not only is he the president of the foundation, he is a lifelong friend (their parents were friends!) of Dr. Warner's and speaks with "Dick" once or twice a day "just because." He had already called Dr. Warner, and within 24 hours, the doctor CALLED US to tell us he had already squeezed us into his appointment schedule. We could not be in better hands!
10/16
We were supposed to get the results of the pathology tests today, BUT bizarre circumstance interfered. Just as our surgeon was back at his office, catching up with all of his patients' progress, he lost a crown and needed emergency dental work. He called me still affected by Novocain in early eve. to say that he had missed the pathologist.
Will meet with her in early a.m. and then will meet Kev and I in Kev's room at about 9:00 to give us the results. Lot's of praying tonight!
10/13
He has a long road of recovery ahead. How long will depend on the rate at which his body heals, whether or not there are any complications and what the final pathology reports reveal.
Kevin will have to recover from a big incision in his abdomen, lots of layers of sutures in his guts and trauma to his body. This by itself will take a minimum of 6 weeks for enough of a recovery to return to work. However, somewhere in the midst of that recovery period (much too soon to know when) they will go back in to resection his intestine and colon, and he will have to heal from those sutures. The surgeon, who refused to be pinned down, did agree that we are looking at at least 8 to 10 weeks before a return to work.
We'll know more after meeting with the surgeon today, and one of the world-renowned carcinoid specialists -- Dr. Richard Warner -- on Thursday. Read more for an amazing story.
Amazing story: After speaking with the oncologist when Kev was in the hospital, i was still left with a lot of troubling questions. The pamphlet about colon rectal cancer he sent me home with stated on page six (of 30 some) that carcinoids were another type of colon cancer, were extremely rare and therefore "not covered in this document."
ARGGHH! I immediately logged onto the Web site of the American Cancer Society, which directed me to the Web site for the Carcinoid Foundation where i was able to learn that this is an extremely rare condition that is also very individualized in its manifestation, therefore highly individualized treatment is called for. The Foundations Web site included an extremely helpful paper written for laymen by a Dr. Richard Warner (medical director of the foundation) who is associated with Mt. Sinai Hospital (just blocks away from our new apartment). Originally, we assumed we would go to Sloan-Kettering for a second opinion, but after reading from and about this doctor, I said to myself, "We have to get this doctor!" (Turns out, carcinoid cancer is so rare, and he is such an authority that when Sloan-Kettering gets cases, they confer with him!) This was on the Friday before Kevin came home.
The following Sunday evening my rebbetzin (rabbi's wife) came to help get the apartment a little more ready for Kev's home-coming. I mentioned the above to her at which point she did a double-take and asked, "Did you say Carcinoid Foundation?" Turns out that she knew (I didn't) that a congregant at our synagogue just happens to be the president (for the past 25 years!) of the Carcinoid Foundation.
She called him the next morning, and as Kevin was checking out of the hospital, this fellow congregant called me to explain that not only is he the president of the foundation, he is a lifelong friend (their parents were friends!) of Dr. Warner's and speaks with "Dick" once or twice a day "just because." He had already called Dr. Warner, and within 24 hours, the doctor CALLED US to tell us he had already squeezed us into his appointment schedule. We could not be in better hands!
10/16
We were supposed to get the results of the pathology tests today, BUT bizarre circumstance interfered. Just as our surgeon was back at his office, catching up with all of his patients' progress, he lost a crown and needed emergency dental work. He called me still affected by Novocain in early eve. to say that he had missed the pathologist.
Will meet with her in early a.m. and then will meet Kev and I in Kev's room at about 9:00 to give us the results. Lot's of praying tonight!
10/13
He has a long road of recovery ahead. How long will depend on the rate at which his body heals, whether or not there are any complications and what the final pathology reports reveal.
Kevin will have to recover from a big incision in his abdomen, lots of layers of sutures in his guts and trauma to his body. This by itself will take a minimum of 6 weeks for enough of a recovery to return to work. However, somewhere in the midst of that recovery period (much too soon to know when) they will go back in to resection his intestine and colon, and he will have to heal from those sutures. The surgeon, who refused to be pinned down, did agree that we are looking at at least 8 to 10 weeks before a return to work.
How is Kevin today?
See "Update before Dr.'s Visit" for latest.
10/16
Better couple of days. Getting stronger. Up more. Still not of soft foods, just liquides, but finally getting an appetite. Getting his personality/humor back!
10/14
Not such a good day. Got hiccups, which fortunately did not cause any strain on sutures or pain - but really tired him out.
They had put him on clear liquids yesterday to "prime the pump" and get his digestive system working. The message I got from the staff was to get liquids into him as he was getting dehydrated and that was resulting in veins collapsing (they had slowed IV to encourage oral intake).
Turns out the liquids he took in didn't prime the pump; they just sat in his stomach. One good hiccup was enough to cause his muscles to spasm resulting in vomiting that wouldn't stop until the stomach was empty. This happened around 4:00 and really wore him out. Fortunately, all of the "activity" was high up enough to not disturb his sutures.
After this, all Kev wanted to do was rest, but it turns out that the best way to get his innards working again is walking. So, despite fatigue, we took two walks down the hall between 5:00 and 7:30 p.m. By the time we got back from the second walk, it was time for his pain shot, which sent him off to la la land.
Please pray that getting up and about tomorrow will actually help get everything "moving" and help to make him feel stronger, not weaker.
10/13
More tired today. He had a "roommate" put in with him night of 10/12 which apparently resulted in lots of noise and disturbances, so Kevin did not get a good night sleep Sunday night. The patient was discharged 4ish Monday afternoon, so for now, Kev has the room to himself.
He did get up in the morning and walk across the room to brush his teeth and wash his face. Three of "the guys" came to visit him around 3:00 in the afternoon. I asked later if he was too tired to really enjoy the visit. He nodded "yes." then i asked if he was glad they came anyway. He nodded "yes" again and smiled. Thanks, guys!
10/12
Good day. The stomach tube (inserted through nose) came out this morning! The catheter came out this afternoon. Kevin is getting stronger and sat up for a while today.
He wanted company, all except for a few hours this afternoon, when he slept.
He thinks he may be up for visitors tomorrow, though it still hurts to talk and he still tires easily. If you'd like to visit, just check with me first by calling my cell phone -- 917-488-2150. He is in room 10A-24 at St. Luke's Roosevelt at 59th and 10th.
The surgeon told me today he may come home this week!
10/11
Fluid levels improved and he was transferred out of CCU to normal nursing floor today at about noon. By 1:30 p.m. he was settled down enough to sleep.
When I told his nurse that he had had no uninterrupted sleep since entering the ER Wed. eve., she closed the blinds, turned off the lights, got him comfortable and LEFT HIM ALONE! He slept for about 2 1/2 hours. Woke long enough to tell me he wanted to go back to sleep and i should go home and come back at 7:00 p.m.
I spoke with the nurse about whether they would still try to get him up and moving today (that was the plan yesterday). She responded that since he really is exhausted, they would most likely let him continue to rest and wait until tomorrow to get him moving about.
All else is good. Vital signs all remain stable and strong.
Other than annoyance at being kept awake by all of the monitoring and his STRONG desire to get the tube out of his nose--he saves most of his strength for telling anyone with any influence how much he hates it and asking when it can come out (tomorrow at the earliest)--his spirits are really good.
10/10
Baruch haShem (Thank G-d) much, much, much better than yesterday's worst case scenarios.
I just spoke with the attending physician in the step-down ICU where Kevin is "resting comfortably" aided by the ability to administer morphine at the push of a button. The Dr. says, "He looks good to me. I expect he will leave ICU and go to the floor tomorrow."
They do not plan to get him up and moving today, but will move him from side to side a bit (to prevent immobility to cause fluid collecting in his lungs).
His vital signs are good, and he is healing from the trauma and the surgery. The lack of fever indicates that there is likely no infection. They have him on IV antibiotics as a preventive measure.
He is in the step down ICU so they can closely monitor him. The reason he needs close monitoring is that his fluids are "shifting" and not where they would like them to be. Simply put, he is somewhat dehydrated, because the fluids they are putting into him are ending up causing edema, more than they are passing through his system. In the words of the surgeon this morning, "This is something we need to fix, because his cells and organs needs to be hydrated to remain healthy. It is not, however, either unusual or a cause for alarm in someone who is as young and relatively healthy as Kevin."
He has tubes going into and out of his body: one tube down a nostril and into his stomach (they put this in Wed. night in ER) helps drain the gas and fluids building up there one tube protruding from where they removed a small portion of his small intestine and another where they removed a small section of colon are serving to eliminate waste from these areas (these are temporary) a catheter has been inserted to eliminate urine (temporary) IV line (lines? I realize i didn't notice if they put a second in) feeds fluids, nutrients, antibiotics and opiates into his body. They were able to remove (while he was still anesthetized) the tube they had placed in his windpipe to help with his breathing during the surgery. He now just has an oxygen tube taped to his nose to help him breathe, but he is breathing on his own.
He's mostly "out of it." Between sheer exhaustion, the trauma his body has suffered and the opiates, it was an effort for him to fight his way to "alertness" enough to acknowledge my presence during my two short visits today (one at 9:15 a.m. and one at 12:00 p.m.) He sent me home (with a promise to return for a brief visit this evening) so that he could just rest.
His spirits seem good. He smiled at me both times i showed up today. It was GREAT to see a smile after not seeing one since i met him in the ER Wed. night. He seems aware of his prognosis, and seems to feel both relieved and bummed out, which is, I think, appropriate.
10/16
Better couple of days. Getting stronger. Up more. Still not of soft foods, just liquides, but finally getting an appetite. Getting his personality/humor back!
10/14
Not such a good day. Got hiccups, which fortunately did not cause any strain on sutures or pain - but really tired him out.
They had put him on clear liquids yesterday to "prime the pump" and get his digestive system working. The message I got from the staff was to get liquids into him as he was getting dehydrated and that was resulting in veins collapsing (they had slowed IV to encourage oral intake).
Turns out the liquids he took in didn't prime the pump; they just sat in his stomach. One good hiccup was enough to cause his muscles to spasm resulting in vomiting that wouldn't stop until the stomach was empty. This happened around 4:00 and really wore him out. Fortunately, all of the "activity" was high up enough to not disturb his sutures.
After this, all Kev wanted to do was rest, but it turns out that the best way to get his innards working again is walking. So, despite fatigue, we took two walks down the hall between 5:00 and 7:30 p.m. By the time we got back from the second walk, it was time for his pain shot, which sent him off to la la land.
Please pray that getting up and about tomorrow will actually help get everything "moving" and help to make him feel stronger, not weaker.
10/13
More tired today. He had a "roommate" put in with him night of 10/12 which apparently resulted in lots of noise and disturbances, so Kevin did not get a good night sleep Sunday night. The patient was discharged 4ish Monday afternoon, so for now, Kev has the room to himself.
He did get up in the morning and walk across the room to brush his teeth and wash his face. Three of "the guys" came to visit him around 3:00 in the afternoon. I asked later if he was too tired to really enjoy the visit. He nodded "yes." then i asked if he was glad they came anyway. He nodded "yes" again and smiled. Thanks, guys!
10/12
Good day. The stomach tube (inserted through nose) came out this morning! The catheter came out this afternoon. Kevin is getting stronger and sat up for a while today.
He wanted company, all except for a few hours this afternoon, when he slept.
He thinks he may be up for visitors tomorrow, though it still hurts to talk and he still tires easily. If you'd like to visit, just check with me first by calling my cell phone -- 917-488-2150. He is in room 10A-24 at St. Luke's Roosevelt at 59th and 10th.
The surgeon told me today he may come home this week!
10/11
Fluid levels improved and he was transferred out of CCU to normal nursing floor today at about noon. By 1:30 p.m. he was settled down enough to sleep.
When I told his nurse that he had had no uninterrupted sleep since entering the ER Wed. eve., she closed the blinds, turned off the lights, got him comfortable and LEFT HIM ALONE! He slept for about 2 1/2 hours. Woke long enough to tell me he wanted to go back to sleep and i should go home and come back at 7:00 p.m.
I spoke with the nurse about whether they would still try to get him up and moving today (that was the plan yesterday). She responded that since he really is exhausted, they would most likely let him continue to rest and wait until tomorrow to get him moving about.
All else is good. Vital signs all remain stable and strong.
Other than annoyance at being kept awake by all of the monitoring and his STRONG desire to get the tube out of his nose--he saves most of his strength for telling anyone with any influence how much he hates it and asking when it can come out (tomorrow at the earliest)--his spirits are really good.
10/10
Baruch haShem (Thank G-d) much, much, much better than yesterday's worst case scenarios.
I just spoke with the attending physician in the step-down ICU where Kevin is "resting comfortably" aided by the ability to administer morphine at the push of a button. The Dr. says, "He looks good to me. I expect he will leave ICU and go to the floor tomorrow."
They do not plan to get him up and moving today, but will move him from side to side a bit (to prevent immobility to cause fluid collecting in his lungs).
His vital signs are good, and he is healing from the trauma and the surgery. The lack of fever indicates that there is likely no infection. They have him on IV antibiotics as a preventive measure.
He is in the step down ICU so they can closely monitor him. The reason he needs close monitoring is that his fluids are "shifting" and not where they would like them to be. Simply put, he is somewhat dehydrated, because the fluids they are putting into him are ending up causing edema, more than they are passing through his system. In the words of the surgeon this morning, "This is something we need to fix, because his cells and organs needs to be hydrated to remain healthy. It is not, however, either unusual or a cause for alarm in someone who is as young and relatively healthy as Kevin."
He has tubes going into and out of his body: one tube down a nostril and into his stomach (they put this in Wed. night in ER) helps drain the gas and fluids building up there one tube protruding from where they removed a small portion of his small intestine and another where they removed a small section of colon are serving to eliminate waste from these areas (these are temporary) a catheter has been inserted to eliminate urine (temporary) IV line (lines? I realize i didn't notice if they put a second in) feeds fluids, nutrients, antibiotics and opiates into his body. They were able to remove (while he was still anesthetized) the tube they had placed in his windpipe to help with his breathing during the surgery. He now just has an oxygen tube taped to his nose to help him breathe, but he is breathing on his own.
He's mostly "out of it." Between sheer exhaustion, the trauma his body has suffered and the opiates, it was an effort for him to fight his way to "alertness" enough to acknowledge my presence during my two short visits today (one at 9:15 a.m. and one at 12:00 p.m.) He sent me home (with a promise to return for a brief visit this evening) so that he could just rest.
His spirits seem good. He smiled at me both times i showed up today. It was GREAT to see a smile after not seeing one since i met him in the ER Wed. night. He seems aware of his prognosis, and seems to feel both relieved and bummed out, which is, I think, appropriate.
Wednesday, October 15, 2003
How's Roni?
Still "GRATEFUL!" and hopeful
I was staring at a couple of scary "worst-case" scenarios there for a while. When i think of the "could haves"--just one being the fact that this pain slammed him when he was out for a lunch time joy ride on the Harley, and could have resulted in a horrible accident--I'm so, so grateful that I can reasonably expect to have Kevin around for a long time to come... Well, the best I can say about all of that right now, without blubbering all over my keyboard, is that i realized on a gut level just how precious my husband is to me...
I'm hopeful and faith-filled. G-d has seen us through some difficult times. Though life is unpredictable and too often hard, G-d has always been with us. Whenever Kevin and I look back at all of our life up until now -- that includes the disappointments, hurts, seeming tragedies... all of it -- we like to sum it up with two lines from one a Kevin's favorite movies (though I'm too tired to know for certain which movie or to get the quote exactly right). the first line has to do with a soldier acknowledging G-d's hand with them in battle and another soldier replying in a heavy brogue "Aye, he has done us grrreat good."
Even now, though my emotions fluctuate from mad to scared to..., I see the goodness of G-d all around me--in the love my husband and I have for one another, in the amazing care we have/are being given, in each of you and in the tangible nearness of a real G-d i know i can cling to.
I was staring at a couple of scary "worst-case" scenarios there for a while. When i think of the "could haves"--just one being the fact that this pain slammed him when he was out for a lunch time joy ride on the Harley, and could have resulted in a horrible accident--I'm so, so grateful that I can reasonably expect to have Kevin around for a long time to come... Well, the best I can say about all of that right now, without blubbering all over my keyboard, is that i realized on a gut level just how precious my husband is to me...
I'm hopeful and faith-filled. G-d has seen us through some difficult times. Though life is unpredictable and too often hard, G-d has always been with us. Whenever Kevin and I look back at all of our life up until now -- that includes the disappointments, hurts, seeming tragedies... all of it -- we like to sum it up with two lines from one a Kevin's favorite movies (though I'm too tired to know for certain which movie or to get the quote exactly right). the first line has to do with a soldier acknowledging G-d's hand with them in battle and another soldier replying in a heavy brogue "Aye, he has done us grrreat good."
Even now, though my emotions fluctuate from mad to scared to..., I see the goodness of G-d all around me--in the love my husband and I have for one another, in the amazing care we have/are being given, in each of you and in the tangible nearness of a real G-d i know i can cling to.
What are the concerns? How can I pray?
Wisdom for us and for the doctors.
No complications: Specifically, no infection or internal bleeding to occur. No staff infection. No blood clots.
Kevin to heal quickly from the trauma and the sutures.
Good Spirits for both Kevin and Roni and that we would sense the nearness and comfort of G-d.
That G-d would bless each person who has reached out to and prayed for us. We are humbled and grateful!
No complications: Specifically, no infection or internal bleeding to occur. No staff infection. No blood clots.
Kevin to heal quickly from the trauma and the sutures.
Good Spirits for both Kevin and Roni and that we would sense the nearness and comfort of G-d.
That G-d would bless each person who has reached out to and prayed for us. We are humbled and grateful!
What about sending cards and gifts to cheer him up?
I'm allergic to most flowers, so filling the apartment with flowers will keep me out!
Kevin will be wanting and needing company, but is still not sure how much he's up to. Still tires easily, and this week my parents are in, plus we have two doctor's appointments. If you'd like to come by, check with me first to see if he's up for it. (Cell, 917-488-2150).
What Kevin DOESN'T want is lots of get-well-cards, balloons, plants, stuffed animals etc. He wants his environment to feel like a home, not a hospital or convalescent center. He also doesn't want your hard earned money spent of "stuff" -- we have enough stuff and would rather that money go to better causes.
What Kevin DOES want are scriptures, songs, prayers, poems, silly and distracting stuff, movie recommendations... anything that will be uplifting and help him pass the time as his body recovers from the surgery.
Also, our lives are about more than convalescence and healing. Kevin still likes a good political debate, etc. and needs these things in his life and his relationships (maybe for now, just let him "win" a few more debates that you normally would ;-)
Kevin has tons of books he's been meaning to read, so he doesn't need more. Perhaps books with daily, easily digestible little readings would be good.
If you have ideas or know of alternative treatment options, please just let me know with a brief synopsis what type of information you can provide or direct us to. We already have a lot to digest from what the doctors (and Kevin has the best!) have told and are telling us. If/when we are ready to explore other things, we will contact you.I'm allergic to most flowers, so filling the apartment with flowers will keep me out!
Kevin will be wanting and needing company, but is still not sure how much he's up to. Still tires easily, and this week my parents are in, plus we have two doctor's appointments. If you'd like to come by, check with me first to see if he's up for it. (Cell, 917-488-2150).
What Kevin DOESN'T want is lots of get-well-cards, balloons, plants, stuffed animals etc. He wants his environment to feel like a home, not a hospital or convalescent center. He also doesn't want your hard earned money spent of "stuff" -- we have enough stuff and would rather that money go to better causes.
What Kevin DOES want are scriptures, songs, prayers, poems, silly and distracting stuff, movie recommendations... anything that will be uplifting and help him pass the time as his body recovers from the surgery.
Also, our lives are about more than convalescence and healing. Kevin still likes a good political debate, etc. and needs these things in his life and his relationships (maybe for now, just let him "win" a few more debates that you normally would ;-)
Kevin has tons of books he's been meaning to read, so he doesn't need more. Perhaps books with daily, easily digestible little readings would be good.
If you have ideas or know of alternative treatment options, please just let me know with a brief synopsis what type of information you can provide or direct us to. We already have a lot to digest from what the doctors (and Kevin has the best!) have told and are telling us. If/when we are ready to explore other things, we will contact you.
Kevin will be wanting and needing company, but is still not sure how much he's up to. Still tires easily, and this week my parents are in, plus we have two doctor's appointments. If you'd like to come by, check with me first to see if he's up for it. (Cell, 917-488-2150).
What Kevin DOESN'T want is lots of get-well-cards, balloons, plants, stuffed animals etc. He wants his environment to feel like a home, not a hospital or convalescent center. He also doesn't want your hard earned money spent of "stuff" -- we have enough stuff and would rather that money go to better causes.
What Kevin DOES want are scriptures, songs, prayers, poems, silly and distracting stuff, movie recommendations... anything that will be uplifting and help him pass the time as his body recovers from the surgery.
Also, our lives are about more than convalescence and healing. Kevin still likes a good political debate, etc. and needs these things in his life and his relationships (maybe for now, just let him "win" a few more debates that you normally would ;-)
Kevin has tons of books he's been meaning to read, so he doesn't need more. Perhaps books with daily, easily digestible little readings would be good.
If you have ideas or know of alternative treatment options, please just let me know with a brief synopsis what type of information you can provide or direct us to. We already have a lot to digest from what the doctors (and Kevin has the best!) have told and are telling us. If/when we are ready to explore other things, we will contact you.I'm allergic to most flowers, so filling the apartment with flowers will keep me out!
Kevin will be wanting and needing company, but is still not sure how much he's up to. Still tires easily, and this week my parents are in, plus we have two doctor's appointments. If you'd like to come by, check with me first to see if he's up for it. (Cell, 917-488-2150).
What Kevin DOESN'T want is lots of get-well-cards, balloons, plants, stuffed animals etc. He wants his environment to feel like a home, not a hospital or convalescent center. He also doesn't want your hard earned money spent of "stuff" -- we have enough stuff and would rather that money go to better causes.
What Kevin DOES want are scriptures, songs, prayers, poems, silly and distracting stuff, movie recommendations... anything that will be uplifting and help him pass the time as his body recovers from the surgery.
Also, our lives are about more than convalescence and healing. Kevin still likes a good political debate, etc. and needs these things in his life and his relationships (maybe for now, just let him "win" a few more debates that you normally would ;-)
Kevin has tons of books he's been meaning to read, so he doesn't need more. Perhaps books with daily, easily digestible little readings would be good.
If you have ideas or know of alternative treatment options, please just let me know with a brief synopsis what type of information you can provide or direct us to. We already have a lot to digest from what the doctors (and Kevin has the best!) have told and are telling us. If/when we are ready to explore other things, we will contact you.
When will he be ready to ride his Harley again?
Looks like that will have to wait until spring. Bumps? Ouch!!!
A BIG thanks to Kevin's coworker, Frank, who got the bike from CT yesterday, and to Bill Valois who is helping to coordinate getting it to his garage for the winter!
A BIG thanks to Kevin's coworker, Frank, who got the bike from CT yesterday, and to Bill Valois who is helping to coordinate getting it to his garage for the winter!
Tuesday, October 14, 2003
What did the explaoratory surgery show and what did they do?
Look for another update tomorrow, 10/29 (after meeting with surgeon today)
10/28
About the initial pathology reports of "no cancer." It turns out that Kevin's rare form only shows up with a certain stain that they were only able to apply later and not during the "quick and dirty" process during the surgery.
10/9 Account of surgery and findings written by Rabbi Bruce:
When Kevin went into surgery, Roni was told it could last one and a half to three hours. It lasted almost exactly three hours. When it was over, the surgeon told Roni that Kevin had a "carcinoid tumor" (carcinoid does NOT mean it is cancerous, it means it is a fluid-filled growth of some kind). The GOOD NEWS is that the INITIAL pathology-study of the tumor (about the size of a softball) and its liquid contents SO FAR shows NO cancer at all. But the full-scale study of the tumor will take about a week to complete, and in some cases, a tumor that initially tests with no cancer will reveal cancer in some sample from some part of the growth when the large-scale study is complete. So - Roni, Kevin and we must wait for that final verdict on the tumor's nature.
The tumor had ruptured and released some of its liquid contents throughout Kevin's abdominal cavity, so he had several large repeated lavages (washings) done to clear our that viscous material. The tumor and the liquid had compromised Kevin's small and large intestine in the area near the appendix, so they had to remove a section starting at the end of his small intestine and ending at the beginning of his colon, and have put a temporary iliostomy in his abdominal wall to allow venting of waste while the surgery heals and cleans up a bit.
They intend to re-attach the intestine and remove the iliostomy later. The surgeon seemed to me very casual about this; almost perfunctory, as if this was a mere housekeeping matter ... so thank G-d again for that. Kevin will be spending all night in the Recovery Room. The operation was extensive. Roni saw him just before we left the hospital and I took her home. He is doing very well. I was there with her when the surgeon gave her the news, so all this is first-hand, and Roni asked me to fill you all in by email for her, since she is quite exhausted and is now at home resting.
All in all - although the sudden and severe nature of the event was quite scary - thus far, no really bad news has surfaced. Let us continue to pray this continues with the final report. Amayn?
Roni asked me to extend a deeply heartfelt thank you to all who prayed and voiced such loving concern for Kevin and her during this crisis.
Shalom -
Rabbi Bruce
10/28
About the initial pathology reports of "no cancer." It turns out that Kevin's rare form only shows up with a certain stain that they were only able to apply later and not during the "quick and dirty" process during the surgery.
10/9 Account of surgery and findings written by Rabbi Bruce:
When Kevin went into surgery, Roni was told it could last one and a half to three hours. It lasted almost exactly three hours. When it was over, the surgeon told Roni that Kevin had a "carcinoid tumor" (carcinoid does NOT mean it is cancerous, it means it is a fluid-filled growth of some kind). The GOOD NEWS is that the INITIAL pathology-study of the tumor (about the size of a softball) and its liquid contents SO FAR shows NO cancer at all. But the full-scale study of the tumor will take about a week to complete, and in some cases, a tumor that initially tests with no cancer will reveal cancer in some sample from some part of the growth when the large-scale study is complete. So - Roni, Kevin and we must wait for that final verdict on the tumor's nature.
The tumor had ruptured and released some of its liquid contents throughout Kevin's abdominal cavity, so he had several large repeated lavages (washings) done to clear our that viscous material. The tumor and the liquid had compromised Kevin's small and large intestine in the area near the appendix, so they had to remove a section starting at the end of his small intestine and ending at the beginning of his colon, and have put a temporary iliostomy in his abdominal wall to allow venting of waste while the surgery heals and cleans up a bit.
They intend to re-attach the intestine and remove the iliostomy later. The surgeon seemed to me very casual about this; almost perfunctory, as if this was a mere housekeeping matter ... so thank G-d again for that. Kevin will be spending all night in the Recovery Room. The operation was extensive. Roni saw him just before we left the hospital and I took her home. He is doing very well. I was there with her when the surgeon gave her the news, so all this is first-hand, and Roni asked me to fill you all in by email for her, since she is quite exhausted and is now at home resting.
All in all - although the sudden and severe nature of the event was quite scary - thus far, no really bad news has surfaced. Let us continue to pray this continues with the final report. Amayn?
Roni asked me to extend a deeply heartfelt thank you to all who prayed and voiced such loving concern for Kevin and her during this crisis.
Shalom -
Rabbi Bruce
What Happened?
How did Kevin end up in the hospital?
On Wed., 10/8/03, Kevin was working in CT. It being a beautiful day, he took his bike for a little joy ride at lunch time. That's when the stabbing pains in his abdomen started. Thankfully, he and the Harley made it back to work okay where he took some Mylanta, which turned out not to help.
He continued to feel so bad that he left the Harley in CT (that's BAD!) and took the train home from work early.
I got the Gas-Ex out and went to run some errands and go to a meeting at our synagogue, thinking that the Gas-Ex and some rest would do the trick. At 7:45 i go a call from Kevin on my cell phone saying that he was going to the emergency room, he felt so bad -- doubled over with pain. I left immediately and met him there (word of advice, if you ever have the option, DON't go to a city hospital ER--they are understaffed and their specialties are more along the lines of shootings, stabbings...)
After about 2 hours in the ER, they determined that he had an intestinal blockage and put a tube through his nose to his stomach to suction out gas and fluids. That helped the horrible stomach pains, and created really bad throat pain and irritation, which no amount of the morphine they gave him seemed to relieve. Finally, after 11 hours in the ER (and no sleep), we saw the surgeon who looked at the CAT scans they had managed to finally take at 4:00 a.m. He informed us the blockage was caused by a large mass. They didn't know what the mass was, and wanted to admit him.
I wasn't comfortable with admitting him to Metropolitan, the hospital that is the closest to our new apt. (Oh yeah, we moved on 9/28. New address below). I called our family Dr. who said he should NOT be admitted there and made arrangements for him to go to Roosevelt Hospital.
When he arrived by ambulance, he was met by 5 doctors who immediately set about finding
what was wrong. He was soon admitted and shortly taken to surgery. There was
a rush to get Kevin into surgery, because there was strong indication of
internal bleeding.
On Wed., 10/8/03, Kevin was working in CT. It being a beautiful day, he took his bike for a little joy ride at lunch time. That's when the stabbing pains in his abdomen started. Thankfully, he and the Harley made it back to work okay where he took some Mylanta, which turned out not to help.
He continued to feel so bad that he left the Harley in CT (that's BAD!) and took the train home from work early.
I got the Gas-Ex out and went to run some errands and go to a meeting at our synagogue, thinking that the Gas-Ex and some rest would do the trick. At 7:45 i go a call from Kevin on my cell phone saying that he was going to the emergency room, he felt so bad -- doubled over with pain. I left immediately and met him there (word of advice, if you ever have the option, DON't go to a city hospital ER--they are understaffed and their specialties are more along the lines of shootings, stabbings...)
After about 2 hours in the ER, they determined that he had an intestinal blockage and put a tube through his nose to his stomach to suction out gas and fluids. That helped the horrible stomach pains, and created really bad throat pain and irritation, which no amount of the morphine they gave him seemed to relieve. Finally, after 11 hours in the ER (and no sleep), we saw the surgeon who looked at the CAT scans they had managed to finally take at 4:00 a.m. He informed us the blockage was caused by a large mass. They didn't know what the mass was, and wanted to admit him.
I wasn't comfortable with admitting him to Metropolitan, the hospital that is the closest to our new apt. (Oh yeah, we moved on 9/28. New address below). I called our family Dr. who said he should NOT be admitted there and made arrangements for him to go to Roosevelt Hospital.
When he arrived by ambulance, he was met by 5 doctors who immediately set about finding
what was wrong. He was soon admitted and shortly taken to surgery. There was
a rush to get Kevin into surgery, because there was strong indication of
internal bleeding.
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