Back from New Orleans
View from the plane... somewhere over Illinois, perhaps. It looks peaceful, but was a ride riddled with turbulence
The Jefferson Flea Market... A real nice dump of a digging place!
A painting at the Jefferson Flea Market. I shoul dhave bought this, but restrained myself. This painting is absolutely brillant in so many ways!After seeing Dr. Woltering in New Orleans, I’m back home. Unfortunately, this trip did very little to help my sense of progress. I’m trying to stay positive, but just can’t get there right now. I guess you have ups and downs, and this was a downer. Woltering was energetic, a bit eccentric, and yes, very knowledgeable. Woltering had no problem speaking plainly, which I appreciate. He also isn’t the type of guy to hold your hand, but I can deal with that. And so, we left only with a direction to take more tests to find this primary tumor… If I lived in Louisiana, this would be easier to stomach. However, getting a local Oncologist, like Dr. Benson, to follow Woltering’s aggressive course is difficult, to say the least!
Woltering has also suggested raising my Sandostatin dose. Unfortunately, Dr. Benson and his nurse practitioner have not been very helpful in facilitating my pleas for more tests. And they are not willing to increase my Sando dose right now, or potentially ever. Therefore, if they are unwilling to take the course I'd like, as suggested by Woltering, I may have to stop going to Northwestern. This is very frustrating, sad, and unfortunate. Right now, locating the primary is very important to me. Of course, there's a chance it will still not be found. However, I want to be certain that we've tried everything!
Course of Action: Per Dr. Eugene Woltering:
1. Increase current dose of Sandostatin LAR from 30MG to 60MG/Month. Start 30MG/ every 2 weeks for 10 weeks. Then,
60MG every 4 weeks: Confirm course with Dr. Woltering.
2. Colonoscopy
3. Bronchoscopy
4. MiBG Scan
5. CT Chest Scan
6. Determine location of primary tumor prior to liver directed therapy. If found, examine option for removal, if feasible. If
primary tumor is not found, repeat exams, or move forward with liver management.
7. Liver management to reduce tumor burden: Liver directed therapy: Theraspheres (Y90), RFAA, or Chemoembilization,
followed by surgical debulking of large tumor.
8.Possibly look for primary, if still not found, during surgical intervention.
Benson’s office has agreed to do the Chest CT & Colonoscopy. At this time, they will not order the MiBG, or, the Bronchoscopy, which they feel is too invasive. (fuck it… I’m willing to let them cut me open to start digging…). They do not feel that raising the Sando dose will help at this time. They think it’s too early, and not necessary. i.e., they want to see more data.
Therefore, I'm headed back to Wisconsin on Friday to consult another doctor at the University of Wisconsin’s NET clinic. This isn’t to say that I think Dr. Benson isn’t good... I just need to feel like more is happening. My consult in Wisconsin is less about new information and more about trying to find an Oncologist I can work with locally. (It’s a preventative measure). UW also has good surgeons, in the event I want to receive treatment there. I’m also looking into Loyola in Maywood, IL… Loyola is not well known for their Carcinoid work, but if they’re willing to work with Woltering, it might be helpful? I guess I just haven’t found a doctor I feel truly confident in. I may have to resign myself to the fact that I will never find one. I’ve never been good about letting others call the shots. This is especially true when it comes to my life.
Woltering has also suggested raising my Sandostatin dose. Unfortunately, Dr. Benson and his nurse practitioner have not been very helpful in facilitating my pleas for more tests. And they are not willing to increase my Sando dose right now, or potentially ever. Therefore, if they are unwilling to take the course I'd like, as suggested by Woltering, I may have to stop going to Northwestern. This is very frustrating, sad, and unfortunate. Right now, locating the primary is very important to me. Of course, there's a chance it will still not be found. However, I want to be certain that we've tried everything!
Course of Action: Per Dr. Eugene Woltering:
1. Increase current dose of Sandostatin LAR from 30MG to 60MG/Month. Start 30MG/ every 2 weeks for 10 weeks. Then,
60MG every 4 weeks: Confirm course with Dr. Woltering.
2. Colonoscopy
3. Bronchoscopy
4. MiBG Scan
5. CT Chest Scan
6. Determine location of primary tumor prior to liver directed therapy. If found, examine option for removal, if feasible. If
primary tumor is not found, repeat exams, or move forward with liver management.
7. Liver management to reduce tumor burden: Liver directed therapy: Theraspheres (Y90), RFAA, or Chemoembilization,
followed by surgical debulking of large tumor.
8.Possibly look for primary, if still not found, during surgical intervention.
Benson’s office has agreed to do the Chest CT & Colonoscopy. At this time, they will not order the MiBG, or, the Bronchoscopy, which they feel is too invasive. (fuck it… I’m willing to let them cut me open to start digging…). They do not feel that raising the Sando dose will help at this time. They think it’s too early, and not necessary. i.e., they want to see more data.
Therefore, I'm headed back to Wisconsin on Friday to consult another doctor at the University of Wisconsin’s NET clinic. This isn’t to say that I think Dr. Benson isn’t good... I just need to feel like more is happening. My consult in Wisconsin is less about new information and more about trying to find an Oncologist I can work with locally. (It’s a preventative measure). UW also has good surgeons, in the event I want to receive treatment there. I’m also looking into Loyola in Maywood, IL… Loyola is not well known for their Carcinoid work, but if they’re willing to work with Woltering, it might be helpful? I guess I just haven’t found a doctor I feel truly confident in. I may have to resign myself to the fact that I will never find one. I’ve never been good about letting others call the shots. This is especially true when it comes to my life.
Both Woltering and Warner have suggested moving toward liver directed therapy for the small lesions, followed by debulking of the large tumor. I like this course of action... Maybe debulking will also relieve some of the pain I have in my upper right quadrant? Woltering, and a few other docs seem to think it's liver pain? ---Yes, I have been having pain in my side, but nothing major, just annoying.
FYI: I also cancelled my appointment in NYC with Dr. Warner. I’m concerned that I’ll be sent back from him as well, asking for more tests. So, I’m going to reserve that appointment for a later date…. Especially because he gets paid in cash, not accepting insurance: $1000!
On a more positive note: Andrea and I had a chance to do a little flea market hunting. It took us less than 30 minutes on the ground to hit the first one! I picked up a great little vintage camera, and few other little odds and ends.
I’m really at a loss here...it’s a strange and tired funk. And therefore, I have little to say… so, I’ll leave it to T.S. Elliot….
“A toothache, or a violent passion, is not necessarily diminished by our knowledge of its causes, its character, its importance or insignificance.”
FYI: I also cancelled my appointment in NYC with Dr. Warner. I’m concerned that I’ll be sent back from him as well, asking for more tests. So, I’m going to reserve that appointment for a later date…. Especially because he gets paid in cash, not accepting insurance: $1000!
On a more positive note: Andrea and I had a chance to do a little flea market hunting. It took us less than 30 minutes on the ground to hit the first one! I picked up a great little vintage camera, and few other little odds and ends.
I’m really at a loss here...it’s a strange and tired funk. And therefore, I have little to say… so, I’ll leave it to T.S. Elliot….
“A toothache, or a violent passion, is not necessarily diminished by our knowledge of its causes, its character, its importance or insignificance.”
Somehow I think that makes sense for me right now…Thanks T.S.
Do these docs ever get on the horn and talk to each other about the advice they are doling out? Or are their ego's so friggin' big that they can't stomach taking the advice of another doc? Also, what kind of doc ONLY takes cash? Does he work out of a van down by the river?
ReplyDeleteAnthony
ReplyDeleteI'm sorry you are in a funk. Have you tried heavy drinking and eating? I find that effective in raising my spirits. Did you get to eat good food in 'Nawlins? Or drink good beer?