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.
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