Sunday, January 28, 2007
Greetings from Florida !
Hello everyone,
I was hoping to post a blog entry sooner but my internet access has been limited. That's one of the few things I can complain about since our vacation is going great. We left State College last Monday, dropped off the dog with a friend, and spent the night at my parent's place in Philadelphia. CFL had arranged for a limousine to pick us up Tuesday morning and take us to the airport. The entire trip went very smoothly. The flight was half full and we got into Orlando right on schedule. The kids enjoyed the flight and were well behaved. We rented an SUV off-site and made our way to the CFL home.
It's a terrific place, 3 bedrooms and well accommodated with everything you might need. Overall, it was a very long day -- traveling really takes its toll on me, and was exhausted. We have been busy every day since then, although I have limited my time at the parks to what I can manage. My parents are here as well, which is a HUGE help. Crowds have been very light at the parks, and the weather has been on the cool side (just a little bit of rain, not bad). Jenny is at Sea World with the kids and my Dad today, while my mother and I are relaxing at their hotel. We've also been to MGM, Epcot, The Magic Kingdom, and Universal Studios. I have been using a wheelchair at the parks which prevents my back from fatiguing too quickly. Tomorrow my parents are leaving to visit some friends further south, and we will probably head out to Universal Studios for another day there.
Even for a healthy family, our schedule has been pretty hectic, but everyone is having a great time. We are flying back Tuesday and things stay busy. I have an appointment (I'm getting a full set of C/T scans) in NYC on Friday and Jenny and I will probably stay in Philadelphia while the kids head home Wednesday. I'll write more when we get back, but here are a couple of photos from the week so far.
Kids at the Airport
With Grammy at the Magic Kingdom
Me with my Parents
I was hoping to post a blog entry sooner but my internet access has been limited. That's one of the few things I can complain about since our vacation is going great. We left State College last Monday, dropped off the dog with a friend, and spent the night at my parent's place in Philadelphia. CFL had arranged for a limousine to pick us up Tuesday morning and take us to the airport. The entire trip went very smoothly. The flight was half full and we got into Orlando right on schedule. The kids enjoyed the flight and were well behaved. We rented an SUV off-site and made our way to the CFL home.
It's a terrific place, 3 bedrooms and well accommodated with everything you might need. Overall, it was a very long day -- traveling really takes its toll on me, and was exhausted. We have been busy every day since then, although I have limited my time at the parks to what I can manage. My parents are here as well, which is a HUGE help. Crowds have been very light at the parks, and the weather has been on the cool side (just a little bit of rain, not bad). Jenny is at Sea World with the kids and my Dad today, while my mother and I are relaxing at their hotel. We've also been to MGM, Epcot, The Magic Kingdom, and Universal Studios. I have been using a wheelchair at the parks which prevents my back from fatiguing too quickly. Tomorrow my parents are leaving to visit some friends further south, and we will probably head out to Universal Studios for another day there.
Even for a healthy family, our schedule has been pretty hectic, but everyone is having a great time. We are flying back Tuesday and things stay busy. I have an appointment (I'm getting a full set of C/T scans) in NYC on Friday and Jenny and I will probably stay in Philadelphia while the kids head home Wednesday. I'll write more when we get back, but here are a couple of photos from the week so far.
Kids at the Airport
With Grammy at the Magic Kingdom
Me with my Parents
Tuesday, January 16, 2007
The Big Surprise
I had an excellent visit with my brother last week, and we traveled into New York last Thursday for my 2-week checkup. Driving into the city was a nice change of pace from my usual train trip, and we didn’t encounter too many problems. My blood pressure has finally come down a bit, it’s been elevated since I started Sorafenib. I also seem to be maintaining my weight reasonably well (still around 155 lbs).
In many ways the last 10 months of my life seem like an eternity, and yet they also seem to have flown by. I have spent over 40 days in the hospital, had two major surgeries (both unexpected), had radiation treatment, undergone 6 rounds of chemotherapy, had several blood transfusions, had dozens of scans and x-rays, and had more blood taken than I would have thought possible. Jenny and I have met many doctors, nurses, and medical staff and have gotten to know some of them well. One of the nicest and most helpful people we have met is a social worker at Fox Chase. When my oncologist there recommended that we speak with a social worker I sort of laughed at the idea, thinking “why would we ever need a social worker?”. I couldn’t have been more wrong. Navigating the world of cancer treatment can be overwhelming, even to an internet-savy person committed to educating themselves. Aside from determining the best course of medical treatment (which is a challenge in itself with sarcoma), there is a complex world of medical insurance, disability insurance, social security, medical record management, and cancer support groups that can quickly overwhelm even the most determined patient. I’ve been lucky to have Jenny deal with the majority of this stuff, and readily admit I strongly dislike dealing with any of it.
We met Anjali, a social worker at Fox Chase, during one of my first chemotherapy sessions. She immediately began to educate us on the various programs and services available to cancer patients. While we are lucky to be financially stable and have solid medical insurance (many cancer patients are not so lucky), there are still programs available to help out people like us. For example, the American Cancer Society provides up to $300 per year for travel expenses associated with receiving cancer treatment. In addition, Anjali became our advocate within the hospital, directing us to the correct staff when we had questions, and often filling out hospital paperwork for us and getting various administrative matters resolved quickly. When I was in the hospital, she visited me nearly every day and would always have some tips or helpful advice for whatever was bothering me that day. Needless to say, I have gained a new found respect for what a social worker can provide to a cancer patient -- not just assistance in financial matters, but a friendly face in a scary environment and an advocate in a complex system.
The biggest impact Anjali has had on our lives is related to the “Surprise” I mentioned in my last blog entry. During one of our first meetings, she mentioned an organization called Crossing the Finish Line (CFL) which is located in the Philadelphia area. We had never heard of it, so she quickly filled us in. CFL is an organization that provides young cancer patients an opportunity to escape the world of cancer treatment through expense-paid week long excursions. One of the most common destinations is Walt Disney World since the organization owns a house on the outskirts of Orlando. At the time (this was late May) we thought it sounded great (and too good to be true, really), and Anjalie helped us apply. To qualify you have to be a cancer patient aged 25-49, reside in Pennsylvania, New Jersey, or Delaware, and have a medical recommendation. Happily, we were accepted into the program and told the coordinator that a trip to Disney would be perfect for our family with 3 kids. The big problem, of course, was picking a date that would work. I was in treatment and having all sorts of issues and it seemed like an impossible task to “predict” a week when I would be available and up for traveling. After my stomach/esophagus surgery in September, Jenny and I decided to just pick a date and see what happened. Originally, we scheduled a date in late February, but were later able to schedule a week in late January. So, the big news is that we are planning on traveling to Orlando a week from today for a 7-day trip. We just told the kids this weekend, and they, of course, are just ecstatic about it. It’s been hard “keeping the secret” but I have been reluctant to commit to going until we knew there was a good chance I would be physically up for the trip. Honestly, I still have major reservations about traveling since it wears me out so thoroughly. But this trip is extremely important to me and my family, and I feel honored to have been selected by CFL. The amazing thing is that CFL provides airfare, housing, rental car, tickets to the parks, and spending money – it really is all expenses paid. They own a 3 bedroom house in Davenport, FL, less than 30 minutes from the parks. Because my ability to go to the parks will be pretty limited, my parents will be in town as well, staying at a nearby hotel. They will be a huge help in keeping up with kids. If I spend most of the week at home, that’s OK. We should be receiving all of our tickets and travel arrangements in the mail this week, which will finally make the trip seem more real. The CFL website has lots of good info on the organization, and even has pictures of the house in Davenport. So my eternal thanks to Anjali at Fox Chase, and Mimi at CFL for setting up this amazing trip, it will be a great respite for our well-deserving family.
So we’ll be getting ready for the trip this week, and I’ll be sure to post again before we leave. If anybody wants a set of Mickey Mouse ears, let me know!
Take care,
Seth
In many ways the last 10 months of my life seem like an eternity, and yet they also seem to have flown by. I have spent over 40 days in the hospital, had two major surgeries (both unexpected), had radiation treatment, undergone 6 rounds of chemotherapy, had several blood transfusions, had dozens of scans and x-rays, and had more blood taken than I would have thought possible. Jenny and I have met many doctors, nurses, and medical staff and have gotten to know some of them well. One of the nicest and most helpful people we have met is a social worker at Fox Chase. When my oncologist there recommended that we speak with a social worker I sort of laughed at the idea, thinking “why would we ever need a social worker?”. I couldn’t have been more wrong. Navigating the world of cancer treatment can be overwhelming, even to an internet-savy person committed to educating themselves. Aside from determining the best course of medical treatment (which is a challenge in itself with sarcoma), there is a complex world of medical insurance, disability insurance, social security, medical record management, and cancer support groups that can quickly overwhelm even the most determined patient. I’ve been lucky to have Jenny deal with the majority of this stuff, and readily admit I strongly dislike dealing with any of it.
We met Anjali, a social worker at Fox Chase, during one of my first chemotherapy sessions. She immediately began to educate us on the various programs and services available to cancer patients. While we are lucky to be financially stable and have solid medical insurance (many cancer patients are not so lucky), there are still programs available to help out people like us. For example, the American Cancer Society provides up to $300 per year for travel expenses associated with receiving cancer treatment. In addition, Anjali became our advocate within the hospital, directing us to the correct staff when we had questions, and often filling out hospital paperwork for us and getting various administrative matters resolved quickly. When I was in the hospital, she visited me nearly every day and would always have some tips or helpful advice for whatever was bothering me that day. Needless to say, I have gained a new found respect for what a social worker can provide to a cancer patient -- not just assistance in financial matters, but a friendly face in a scary environment and an advocate in a complex system.
The biggest impact Anjali has had on our lives is related to the “Surprise” I mentioned in my last blog entry. During one of our first meetings, she mentioned an organization called Crossing the Finish Line (CFL) which is located in the Philadelphia area. We had never heard of it, so she quickly filled us in. CFL is an organization that provides young cancer patients an opportunity to escape the world of cancer treatment through expense-paid week long excursions. One of the most common destinations is Walt Disney World since the organization owns a house on the outskirts of Orlando. At the time (this was late May) we thought it sounded great (and too good to be true, really), and Anjalie helped us apply. To qualify you have to be a cancer patient aged 25-49, reside in Pennsylvania, New Jersey, or Delaware, and have a medical recommendation. Happily, we were accepted into the program and told the coordinator that a trip to Disney would be perfect for our family with 3 kids. The big problem, of course, was picking a date that would work. I was in treatment and having all sorts of issues and it seemed like an impossible task to “predict” a week when I would be available and up for traveling. After my stomach/esophagus surgery in September, Jenny and I decided to just pick a date and see what happened. Originally, we scheduled a date in late February, but were later able to schedule a week in late January. So, the big news is that we are planning on traveling to Orlando a week from today for a 7-day trip. We just told the kids this weekend, and they, of course, are just ecstatic about it. It’s been hard “keeping the secret” but I have been reluctant to commit to going until we knew there was a good chance I would be physically up for the trip. Honestly, I still have major reservations about traveling since it wears me out so thoroughly. But this trip is extremely important to me and my family, and I feel honored to have been selected by CFL. The amazing thing is that CFL provides airfare, housing, rental car, tickets to the parks, and spending money – it really is all expenses paid. They own a 3 bedroom house in Davenport, FL, less than 30 minutes from the parks. Because my ability to go to the parks will be pretty limited, my parents will be in town as well, staying at a nearby hotel. They will be a huge help in keeping up with kids. If I spend most of the week at home, that’s OK. We should be receiving all of our tickets and travel arrangements in the mail this week, which will finally make the trip seem more real. The CFL website has lots of good info on the organization, and even has pictures of the house in Davenport. So my eternal thanks to Anjali at Fox Chase, and Mimi at CFL for setting up this amazing trip, it will be a great respite for our well-deserving family.
So we’ll be getting ready for the trip this week, and I’ll be sure to post again before we leave. If anybody wants a set of Mickey Mouse ears, let me know!
Take care,
Seth
Friday, January 05, 2007
Happy New Year
Well my blog update is long overdue, and I would like to wish everyone a Happy 2007. Personally, it still feels a little weird to think that it’s the year 2007! We had an uneventful New Year’s here, and the kids are now back in school and Jenny is back at work.
Last week I traveled to New York (on the 27th) to get C/T scans done of my chest, abdomen, and pelvis. I then met with Dr. D'Adamo the next day. Unfortunately, the scan results were not as good as I would have hoped. In general, the tumors had grown, although there were several areas of disease that had appeared to shrink. Because I have several tumors in my pelvis and abdomen, as well as lesions on my pelvic bones and spine in several places, comparing one scan to the next can be difficult. The other bad news was that there was disease present in the lung, which has not been previously noted. Some of the nodules showed signs of necrosis (dying), even though they were larger than in October. I am waiting to receive a paper copy of the radiologist’s report to really try to understand what is really going on (It’s hard to get a real accurate idea just on a conversation with the doctor since they are just summarizing). But the doctor's general description was more negative than usual.
After some discussion, we decided to stay the course for another month on Sorafenib, and then do another set of scans in late January. He did give me the option of switching to something else at this point, but I really would like to give it a chance before switching to something more toxic. So for now I am hoping that we’ll see some better results by the end of the month. If not we'll look at some different chemo drug combinations, or perhaps another trial (although I don't have one in mind yet).
One of the reasons I have been slow to post since my visit is that it has taken me some time to “bounce back” since last week. For starters, travel via car, train, taxi and subway really wears me out after a couple of days. Also, although I can’t say I was expecting any significant tumor shrinkage, it does get tough to keep getting scanned and not see better results. That is the reality of metastatic sarcoma – there is no identified cure. Aside from complete resection of the diseased tissue, there is no known treatment that eliminates the disease completely. Over the last 9 months I have accepted this fact, but it’s still hard to live with. I had to think about that for a few days, but a week back at home has helped ground me again and we’ll keep plugging away.
My brother Rob is heading for a visit all next week and will take me to my appointment in New York on Thursday. It will be nice to have a few days with him in a more relaxed environment.
We have a big surprise planned for the kids coming up, but we haven’t told them yet. In the interest of fairness I won’t reveal it here now, but you can expect me to do so in the coming weeks.
That’s all for now, we enjoyed the many holiday cards we received over the last month. (I’m sorry to say we never managed to get a card out). Stay in touch and again, Happy New Year!
Seth
Last week I traveled to New York (on the 27th) to get C/T scans done of my chest, abdomen, and pelvis. I then met with Dr. D'Adamo the next day. Unfortunately, the scan results were not as good as I would have hoped. In general, the tumors had grown, although there were several areas of disease that had appeared to shrink. Because I have several tumors in my pelvis and abdomen, as well as lesions on my pelvic bones and spine in several places, comparing one scan to the next can be difficult. The other bad news was that there was disease present in the lung, which has not been previously noted. Some of the nodules showed signs of necrosis (dying), even though they were larger than in October. I am waiting to receive a paper copy of the radiologist’s report to really try to understand what is really going on (It’s hard to get a real accurate idea just on a conversation with the doctor since they are just summarizing). But the doctor's general description was more negative than usual.
After some discussion, we decided to stay the course for another month on Sorafenib, and then do another set of scans in late January. He did give me the option of switching to something else at this point, but I really would like to give it a chance before switching to something more toxic. So for now I am hoping that we’ll see some better results by the end of the month. If not we'll look at some different chemo drug combinations, or perhaps another trial (although I don't have one in mind yet).
One of the reasons I have been slow to post since my visit is that it has taken me some time to “bounce back” since last week. For starters, travel via car, train, taxi and subway really wears me out after a couple of days. Also, although I can’t say I was expecting any significant tumor shrinkage, it does get tough to keep getting scanned and not see better results. That is the reality of metastatic sarcoma – there is no identified cure. Aside from complete resection of the diseased tissue, there is no known treatment that eliminates the disease completely. Over the last 9 months I have accepted this fact, but it’s still hard to live with. I had to think about that for a few days, but a week back at home has helped ground me again and we’ll keep plugging away.
My brother Rob is heading for a visit all next week and will take me to my appointment in New York on Thursday. It will be nice to have a few days with him in a more relaxed environment.
We have a big surprise planned for the kids coming up, but we haven’t told them yet. In the interest of fairness I won’t reveal it here now, but you can expect me to do so in the coming weeks.
That’s all for now, we enjoyed the many holiday cards we received over the last month. (I’m sorry to say we never managed to get a card out). Stay in touch and again, Happy New Year!
Seth
