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.
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