Well, it looks like my surgery is scheduled for Thursday, December 20th. So much for it being on a Monday. :(
I've got a pre-op meeting with my doctor scheduled for Tuesday, December 11, and I'm hoping at that time to ask him about the surgery on my lymph nodes. Since that was a major factor in what we're doing, but neither he nor the cancer doctor I saw last week thought they were cancerous, I'm wondering if we might not want to give the antibiotics I'm on a chance to work and then schedule another CT scan to see if the nodes have returned to their normal size. If they have, then it would seem silly to take them out for a biopsy, but if they haven't, we'll know they need to be checked.
We'll see where we are there. I should at least have an answer about that before I go in for the surgery.
I'm just sorry this is being done so close to Christmas. I'd hoped to have it done the week before this, but apparently scheduling operations at this time of year is really hard.
I'll probably not post another update until the pre-op meeting unless something comes up.
Thursday, November 29, 2007
Monday, November 26, 2007
Back from the ENT
Actually two updates.
The first one was that Randall ran over to the Family Practice Clinic this morning. We don't really qualify for much there, but then they aren't set up for what I have, so that's not surprising. What we did do is qualify for another pharmacy discount card (I use that term for lack of another one) and also a low co-pay sort of thing for a doctor in their system. I will call for an appointment, but that will be weeks away and more of a GP sort of thing. Not really related to what's going on with my tongue.
OK. Now for the big update.
Saw Dr. Lehr, the ENT, this afternoon. Very nice man. Very good at listening and very willing to work with low income patients and people with weirdass pain medicine issues. He took a look at my records, poked around in my mouth and said that he agreed with Dr. Mundy (the Fentress Cancer Center doctor I saw last week) that surgery was the best initial option. He also agreed with Dr. Mundy that the lymph nodes were probably not cancerous, but that he'd recommend removing some and testing them. He's calling this early stage 2 cancer, and that's a whole lot better than it could be. Any discussion on radiation or chemo would have to wait until after the surgery (let's all hope radiation isn't needed because they'd have to pull all my teeth!).
So, what will happen next is their office will set up the surgery and call us (probably tomorrow or Wednesday). What they're looking at is it should be scheduled for a Monday, probably before Christmas and I'll stay one night at the hospital.
As a sideshow, of course, there's the ear/throat problems that I've had for a long time that has gotten worse during the last sixth months. That is still up in the air. It might be related to the cancer and it might not (my personal thinking is that it isn't, but that's me). However, Dr. Lehr has prescribed antibiotics for that since the problems did respond back in October to antibiotics. I suspect we'll tackle this issue later since it's not the critical one.
So that's where we are. I'll post again when I know more about the surgery date and such. Overall, though, this is VERY good news and we're all relieved at what we've found out.
The first one was that Randall ran over to the Family Practice Clinic this morning. We don't really qualify for much there, but then they aren't set up for what I have, so that's not surprising. What we did do is qualify for another pharmacy discount card (I use that term for lack of another one) and also a low co-pay sort of thing for a doctor in their system. I will call for an appointment, but that will be weeks away and more of a GP sort of thing. Not really related to what's going on with my tongue.
OK. Now for the big update.
Saw Dr. Lehr, the ENT, this afternoon. Very nice man. Very good at listening and very willing to work with low income patients and people with weirdass pain medicine issues. He took a look at my records, poked around in my mouth and said that he agreed with Dr. Mundy (the Fentress Cancer Center doctor I saw last week) that surgery was the best initial option. He also agreed with Dr. Mundy that the lymph nodes were probably not cancerous, but that he'd recommend removing some and testing them. He's calling this early stage 2 cancer, and that's a whole lot better than it could be. Any discussion on radiation or chemo would have to wait until after the surgery (let's all hope radiation isn't needed because they'd have to pull all my teeth!).
So, what will happen next is their office will set up the surgery and call us (probably tomorrow or Wednesday). What they're looking at is it should be scheduled for a Monday, probably before Christmas and I'll stay one night at the hospital.
As a sideshow, of course, there's the ear/throat problems that I've had for a long time that has gotten worse during the last sixth months. That is still up in the air. It might be related to the cancer and it might not (my personal thinking is that it isn't, but that's me). However, Dr. Lehr has prescribed antibiotics for that since the problems did respond back in October to antibiotics. I suspect we'll tackle this issue later since it's not the critical one.
So that's where we are. I'll post again when I know more about the surgery date and such. Overall, though, this is VERY good news and we're all relieved at what we've found out.
Wednesday, November 21, 2007
ENT Appointment
I know I said I didn't think I'd post today unless something cropped up. Well, it did. :) And it's actually some fairly good news for us.
+++++++++++++++++++
Dr Lehr's (ENT) office called this morning and we have an appointment Monday at 2:45 though we'll need to be there at 2:15 for paperwork.
The girl Randall talked to was quite helpful and very apologetic about the confusion. Apparently Dr. Lehr is very good at working with people who have income problems, and this initial visit will be $100-$150 (I guess depending on what he does). The girl who called also told Randall the name of a person he has to talk to at Family Practice Clinic because once I'm set up there, things will move much faster/easier with Dr. Lehr's office.
Apparently, we've needed to talk to that clinic and speak to the person in charge of Indigent Health Care. This is the first time ANYONE has mentioned this and Randall said the girl at Lehr's office was surprised no one had told about us this before. Unfortunately, that health care won't work for us because it's for people with zero income, but he's going to go over to Family Practice on Friday and get set up for a couple of other things and pump them for information. Also, they work on a sliding scale based on income, and I will qualify for another prescription drug program and I will get a regular doctor (which I definitely DO need) who I can see at a very reduced rate.
So all in all, it's a pretty good day for information. We would have loved to qualify for something that will help pay the medical bills, but I think we're chipping away at one end of them, and that's a big relief.
With any luck, I'll be able to make a quick post on Friday about what Randall found out from is visit with the people at FPC.
(And for those of you wondering why Randall is so involved in talking to people and I'm translating the results, the lesions on my tongue make it nearly impossible for me to talk a lot. He's having to pick up the yakking slack since I've got to keep my mouth shut a lot of the time.)
+++++++++++++++++++
Dr Lehr's (ENT) office called this morning and we have an appointment Monday at 2:45 though we'll need to be there at 2:15 for paperwork.
The girl Randall talked to was quite helpful and very apologetic about the confusion. Apparently Dr. Lehr is very good at working with people who have income problems, and this initial visit will be $100-$150 (I guess depending on what he does). The girl who called also told Randall the name of a person he has to talk to at Family Practice Clinic because once I'm set up there, things will move much faster/easier with Dr. Lehr's office.
Apparently, we've needed to talk to that clinic and speak to the person in charge of Indigent Health Care. This is the first time ANYONE has mentioned this and Randall said the girl at Lehr's office was surprised no one had told about us this before. Unfortunately, that health care won't work for us because it's for people with zero income, but he's going to go over to Family Practice on Friday and get set up for a couple of other things and pump them for information. Also, they work on a sliding scale based on income, and I will qualify for another prescription drug program and I will get a regular doctor (which I definitely DO need) who I can see at a very reduced rate.
So all in all, it's a pretty good day for information. We would have loved to qualify for something that will help pay the medical bills, but I think we're chipping away at one end of them, and that's a big relief.
With any luck, I'll be able to make a quick post on Friday about what Randall found out from is visit with the people at FPC.
(And for those of you wondering why Randall is so involved in talking to people and I'm translating the results, the lesions on my tongue make it nearly impossible for me to talk a lot. He's having to pick up the yakking slack since I've got to keep my mouth shut a lot of the time.)
Comments
Someone brought it to my attention that this blog wasn't allowing comments from people who weren't registered with gmail. I'm in the process of changing that, so hopefully by later today I'll have that straightened out.
Tuesday, November 20, 2007
Some pretty good news
I know I promised I'd write a bit more about yesterday's activity, but I find I am absolutely exhausted. I will say that we're trying now to get in to see an Ear, Nose, Throat doctor because the oncologist yesterday feels the spot on my tongue is borderline for radiation, but a possible good candidate for surgery. That's where the ENT comes in. It's a money situation, though, since the ENT doctor isn't a part of the hospital systems we're working with. So stay tuned for more on this. If we can work out the $$, it looks like I can get in there for an initial consultation on Monday.
Also, we're now set up so all my drugs related to my cancer treatment (and that includes pain meds, etc) are paid for up to $400/month. That's actually more than it sounds like, because the group doing this has negotiated everything with the participating pharmacies, so you get a good bang for your buck. They can also help with some other non-doctor/hospital related expenses, and I think I'm going to ask Randall to talk to them about the options next week.
Now for the Good News
The oncologist called late this afternoon. I was laying down, so Randall talked with him. He had the results of the CT scan they took yesterday, and from what he's looked at, it seems the cancer is located solely on my tongue. He said there is something going on with the lymph nodes, but the size is wrong for them to be involved in the cancer. He said for them to be involved, the size should be 2 centimeters. And these aren't. They're 1 cms or less. He doesn't know what that is, and really wants the ENT to get involved because this isn't his area of expertise.
I have to say this may actually track with something that's been going on with my ear and throat. That all came to a head about the time my tongue started having problems, but tying the three together never made a whole lot of sense to me. I also know both my throat and ear responded to some antibiotics I was on earlier this fall, though they never completely cleared up. I know the doctor I saw then mentioned an ENT at the time since he couldn't give me penicillin because of allergies.
So this is where we are. I'm not sure I'll have a post tomorrow unless I find out something that I'm not planning on. You never know, maybe some phone call will come in that will be too good to not pass on. If not, though, I suspect I'll post again after I see the ENT.
Meanwhile, I hope everyone has a Happy and Safe Thanksgiving!
Also, we're now set up so all my drugs related to my cancer treatment (and that includes pain meds, etc) are paid for up to $400/month. That's actually more than it sounds like, because the group doing this has negotiated everything with the participating pharmacies, so you get a good bang for your buck. They can also help with some other non-doctor/hospital related expenses, and I think I'm going to ask Randall to talk to them about the options next week.
Now for the Good News
The oncologist called late this afternoon. I was laying down, so Randall talked with him. He had the results of the CT scan they took yesterday, and from what he's looked at, it seems the cancer is located solely on my tongue. He said there is something going on with the lymph nodes, but the size is wrong for them to be involved in the cancer. He said for them to be involved, the size should be 2 centimeters. And these aren't. They're 1 cms or less. He doesn't know what that is, and really wants the ENT to get involved because this isn't his area of expertise.
I have to say this may actually track with something that's been going on with my ear and throat. That all came to a head about the time my tongue started having problems, but tying the three together never made a whole lot of sense to me. I also know both my throat and ear responded to some antibiotics I was on earlier this fall, though they never completely cleared up. I know the doctor I saw then mentioned an ENT at the time since he couldn't give me penicillin because of allergies.
So this is where we are. I'm not sure I'll have a post tomorrow unless I find out something that I'm not planning on. You never know, maybe some phone call will come in that will be too good to not pass on. If not, though, I suspect I'll post again after I see the ENT.
Meanwhile, I hope everyone has a Happy and Safe Thanksgiving!
Monday, November 19, 2007
One step forward...two steps back
Well, maybe not that bad.
Saw the oncologist today. Not real impressed since he doesn't seem to listen very well, but maybe I'll feel differently tomorrow. I'm in a lot of pain since I was away from all my medication and ice and had to talk a lot, so this is going to be really, really short. I'll do a bit more tomorrow.
Paperwork has been started, and I call a guy tomorrow who is supposed to help me get payment for all my cancer drugs, pain meds, etc. The oncologist ordered some bloodwork and a CT scan this afternoon of my head/neck. He's referred me to an ENT to look at my mouth and hopefully we will get an appointment for Monday.
That's it from here today. I'm gonna go pop pills and sleep for a bit. Hopefully I'll have a bit more to post tomorrow or Wednesday.
Saw the oncologist today. Not real impressed since he doesn't seem to listen very well, but maybe I'll feel differently tomorrow. I'm in a lot of pain since I was away from all my medication and ice and had to talk a lot, so this is going to be really, really short. I'll do a bit more tomorrow.
Paperwork has been started, and I call a guy tomorrow who is supposed to help me get payment for all my cancer drugs, pain meds, etc. The oncologist ordered some bloodwork and a CT scan this afternoon of my head/neck. He's referred me to an ENT to look at my mouth and hopefully we will get an appointment for Monday.
That's it from here today. I'm gonna go pop pills and sleep for a bit. Hopefully I'll have a bit more to post tomorrow or Wednesday.
Thursday, November 15, 2007
Where I am in the process
I was diagnosed with SCC in mid-October, and have been doing the hamster wheel bit for the last month trying to get into the right place for treatment. This has been made more difficult since there's no health insurance and I'm having to apply for Medicaid.
Fortunately, I got hooked up this week with the group here in Waco that I think will be the ones I need to work with...Fentress Cancer Center. The Fentress group is located on the Hillcrest Hospital campus. I had my first quickie talk with them yesterday and came home with a bunch of paperwork and an appointment for Monday, November 19 at 12:15. I'll talk to the paperwork people, the RN, the doctor and then go for a CT scan at 2:15.
I suspect I'll have an entry shortly after that. :)
Fortunately, I got hooked up this week with the group here in Waco that I think will be the ones I need to work with...Fentress Cancer Center. The Fentress group is located on the Hillcrest Hospital campus. I had my first quickie talk with them yesterday and came home with a bunch of paperwork and an appointment for Monday, November 19 at 12:15. I'll talk to the paperwork people, the RN, the doctor and then go for a CT scan at 2:15.
I suspect I'll have an entry shortly after that. :)
What is oral squamous cell carcinoma
Googling this can scare you half to death. Merk has some pretty good information here:
http://www.merck.com/mmpe/sec08/ch093/ch093e.html .
http://www.merck.com/mmpe/sec08/ch093/ch093e.html .
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