Friday, March 17, 2006
My Background
I 've set up this blog to be able efficiently share current info on my medical condition and let everyone know how things are going. I'm hoping it will help us keep everyone informed, so please let me know what you think.
It's been a crazy couple of weeks. For those that don't know, I was diagnosed with soft tissue Sarcoma in March 2004 when we lived in Wash DC. We found great care at the Washington Hospital Center, specifically at their Cancer Institute, with Dr Steves (surgeon) and Dr Priebat (oncologist). Dr Steves removed a 4.5cm tumor from my left abdominal wall and replaced my muscle with an index card sized piece of mesh. Given the aggressive nature of Sarcoma, a successful initial resection is a great way to start treatment. I was closely followed over the last 2 years, and we had since moved up to State College. I had been seeing an oncologist every 3 months at Hershey with no indication of recurrence. For abdominal sarcoma, recurrence locally or in the lungs is what would be typical.
In my case, since about Christmas, I had been chest and back pain, and not feeling well. I was convinced I had an ulcer, and finally ended up having a pelvic C/T which revealed a 5cm mass in my right pelvis. I had also started having numbness in my legs, shins, and finally torso. We checked in the Hershey Hospital on 3/3/06, and a full spinal MRI showed additional tumor in the T4 vertebrae (this was pretty scary news at the time). The drs were recommending immediate surgery to get the pressure off the spinal cord. Long story short, we knew from past experience that we had to get a Sarcoma center where surgeons specialize in this sort of stuff. We quickly found that Dr Boland and Dr Bilski were published in spinal sarcoma surgery, and Memorial Sloan Kettering is on of the leading sarcoma centers. I called an old friend, now an orthopedic dr in the NY area, and he was able to accommodate a next day appt with Dr Boland, who was one heck of a nice guy and very reassuring. We checked in to Sloan on Wednesday the 8th and had surgery scheduled for the 10th. There were lots of tests, scans etc to get ready, and by early afternoon on Friday they were wheeling me into the OR. The first 2 days of recovery were very tough, I could hardly move, and my whole spine felt like a had a very solid metal yardstick attached to it. It turns out that the tumor was in both T4 and T5, and they ended up operating from T2 to T7 to get everything stabilized. I am still waiting to the X-Ray of the hardware they put in there -- screws, rods etc. The good news is that I have been recovering fast and my neck and spine seem to be adjusting to the new arrangement. The tumor was in both the vertebral body and the epidural space, so the T4 and T5 have definitely been altered in shape and content. The surgeons were quite clear that I "really needed this surgery" and that "things were very tight in there". Quite honestly I don't know if they were expecting me to be able to move me legs again, but they did one heck of a job. By Monday the 13th I was able to get out of bed almost on my own, and by late Tuesday I was chomping at the bit the get checked out and get home to recover. We finally got out of there by Wednesday night. My kudos and thanks to all the staff on the Neurosurgery floor at Sloan, they were all terrific and very supportive of my recovery.
The next big steps here are
1. Following up on my spinal surgery
2. Getting radiation treatment on the spine and
3. Getting a chemotherapy protocol established the address the remaining disease in my pelvis. There are lots of options here on how this will be addressed, so these are topics I will reserve for another post.
Jenny and I will be heading back to NYC next Wednesday to start dealing with all of this , right now we are happy to back in our own bed and to be able to see and hug the kids.
As I get them, I intend to post some C/T and MRI imagery of some of the more interesting aspects of my case.
Also, I hope to be able to share some more information on sarcoma and related topics as we continue to learn about it.
Much love,
Seth
PS my apologies for spelling and grammar, I am still on Percocet among other strange drugs...
It's been a crazy couple of weeks. For those that don't know, I was diagnosed with soft tissue Sarcoma in March 2004 when we lived in Wash DC. We found great care at the Washington Hospital Center, specifically at their Cancer Institute, with Dr Steves (surgeon) and Dr Priebat (oncologist). Dr Steves removed a 4.5cm tumor from my left abdominal wall and replaced my muscle with an index card sized piece of mesh. Given the aggressive nature of Sarcoma, a successful initial resection is a great way to start treatment. I was closely followed over the last 2 years, and we had since moved up to State College. I had been seeing an oncologist every 3 months at Hershey with no indication of recurrence. For abdominal sarcoma, recurrence locally or in the lungs is what would be typical.
In my case, since about Christmas, I had been chest and back pain, and not feeling well. I was convinced I had an ulcer, and finally ended up having a pelvic C/T which revealed a 5cm mass in my right pelvis. I had also started having numbness in my legs, shins, and finally torso. We checked in the Hershey Hospital on 3/3/06, and a full spinal MRI showed additional tumor in the T4 vertebrae (this was pretty scary news at the time). The drs were recommending immediate surgery to get the pressure off the spinal cord. Long story short, we knew from past experience that we had to get a Sarcoma center where surgeons specialize in this sort of stuff. We quickly found that Dr Boland and Dr Bilski were published in spinal sarcoma surgery, and Memorial Sloan Kettering is on of the leading sarcoma centers. I called an old friend, now an orthopedic dr in the NY area, and he was able to accommodate a next day appt with Dr Boland, who was one heck of a nice guy and very reassuring. We checked in to Sloan on Wednesday the 8th and had surgery scheduled for the 10th. There were lots of tests, scans etc to get ready, and by early afternoon on Friday they were wheeling me into the OR. The first 2 days of recovery were very tough, I could hardly move, and my whole spine felt like a had a very solid metal yardstick attached to it. It turns out that the tumor was in both T4 and T5, and they ended up operating from T2 to T7 to get everything stabilized. I am still waiting to the X-Ray of the hardware they put in there -- screws, rods etc. The good news is that I have been recovering fast and my neck and spine seem to be adjusting to the new arrangement. The tumor was in both the vertebral body and the epidural space, so the T4 and T5 have definitely been altered in shape and content. The surgeons were quite clear that I "really needed this surgery" and that "things were very tight in there". Quite honestly I don't know if they were expecting me to be able to move me legs again, but they did one heck of a job. By Monday the 13th I was able to get out of bed almost on my own, and by late Tuesday I was chomping at the bit the get checked out and get home to recover. We finally got out of there by Wednesday night. My kudos and thanks to all the staff on the Neurosurgery floor at Sloan, they were all terrific and very supportive of my recovery.
The next big steps here are
1. Following up on my spinal surgery
2. Getting radiation treatment on the spine and
3. Getting a chemotherapy protocol established the address the remaining disease in my pelvis. There are lots of options here on how this will be addressed, so these are topics I will reserve for another post.
Jenny and I will be heading back to NYC next Wednesday to start dealing with all of this , right now we are happy to back in our own bed and to be able to see and hug the kids.
As I get them, I intend to post some C/T and MRI imagery of some of the more interesting aspects of my case.
Also, I hope to be able to share some more information on sarcoma and related topics as we continue to learn about it.
Much love,
Seth
PS my apologies for spelling and grammar, I am still on Percocet among other strange drugs...
# posted by Seth Edmondson @ 3:55 PM 
