Pill Popping 201

Ah. Addiction. So not surprising.

I came off my Tramadol three days ago, and ever since then I've been having the skin creepy crawlies and sleeplessness. So after doing some research, I find that apparently this drug is highly addictive. And not really surprising. I was on it for two months, and the last three weeks I was using it a lot.

Heh...well. I guess I'm going to go back on one a day for a few days, and then half of one for a few days and then half of one every other day. See how that works.

Pill Popping 101

Ah...grasshopper...when you're missing half your tongue you can't just pop a pill like you used to. You have to put it WWWWWWAAAAAAAAAAYYYYYYYYYY into the back of your mouth or it gets stuck. Then it melts, and if your mouth is numb, you can't tell and you get "chemical" burns on your tongue.

The things you learn.

HAPPYNEKKIDSTAPLESOUTDANCE!!!

Ahem...sorry about that. :) I suppose you can tell the staples are out of my neck.

Happiness. I can shower good again. And I'm hoping sleep will be easier, because they've really bugged me the last couple of nights. We'll also continue cleaning the stapled area through the weekend just to keep it clean, and then we'll discontinue that.

We have another follow-up appointment next Thursday morning, late, so there will be an update then.

OK. Now for the report.

Dr. Lehr got the path report back and it's essentially what he had told Randall that he thought after he came out of surgery. It does look like they got all the tumor during the operation...everything else in that area appears to be clean. However, 3 of the 16 lymph nodes they biopsied showed microscopic signs of cancer...indications that they have caught that very, very early in the spreading stage.

So, good news on the tumor itself. Not so good news that it's made it to the lymph nodes, but that doesn't change the prognosis, and Dr. Lehr seems to think further treatment is more of the precautionary type. Obviously they would want to be sure of the lymph nodes, but the radiation is how they're hoping to treat it.

So, yes to radiation. And that does mean pulling teeth. There will be some consultation stuff that needs to happen, but Dr. Lehr hopes for radiation treatments to start in early February.

For now that's where we are. Pretty much the expected news and the treatment is in line with what we were sort of expecting before the surgery.

As for me, I'm pooped. Happy to be able to shower again, but tired. Of course, it's late afternoon and I start that downhill slide anyway, so it's not unexpected. I'll continue to take it easy (and I'm still on the liquid diet until I can transition over) and I'll probably be off most of the weekend.

I'll definitely have an update for you after we go for the second post-op appointment on Thursday.

Quick Update

I've got an appointment at 1:45 on Friday to do the post-op visit with my doctor and get these wonderful staples removed. I'm going to have to ask him for recommendations on softening this scar because it's already pulling. I know that's normal, but I would like to retain as much elasticity as I can, so I'm sure I'm going to have to find something to apply topically that will help.

Also, I probably won't do another update until after the doctor visit. As I'm sure everyone can guess, I don't have to do much to wear myself out. Between that and having a bad night's sleep last night, I'm zoning. So I'm going to retire to the bedroom with the cats and a good book. :)

Night!!

Merry Ho-Ho, Folks!

Doing a real quick drive by posting and wishing everyone happy holidays for whichever one you celebrate. :)

Randall kept you guys more or less up to date with what went on (and did better than I would since I didn't get to hear nearly as much good stuff since I was drugged to the eyeballs), so most of you have a fairly decent idea of what's happened. Also, let me say that both of us really appreciate all the prayers and speedy recovery thoughts. They are being put to good use, as I'm sure you can imagine.

I'm going to have to keep this really brief since I do have a few things I have to try to get done this morning and I have to move slow and I tired out easily...but damnit, I'm washing my hair and taking a shower.

Not sure when I'll be around more. Randall will update as needed here to keep everyone on board. I'm up/down, but I suspect it won't be until next week that I'm on more of a normal schedule.

I hope everyone has a safe and wonderful holiday season!

Merry Christmas Everyone

Donna and I would like to wish everyone a very Merry Christmas (or whatever Winter holidays you celebrate). We opened our presents the day before Donna went in for surgery. There will not be any special meals here this year as Donna is on a liquid diet, but there is a turkey in the freezer waiting to be brined and smoked when Donna feels up to it. Smoked turkey soup!

Yesterday was hard. Donna was very tired both from the hospital stay and from a bad first night home (trouble sleeping due to the cats being annoying). I expect it is going to take her several days just to recover from what the hospital bed did to her back. The incision (and the staples holding it shut) are really bothering her. It doesn't help that I have to clean it three times a day with cold liquids and creams (that really can't be warmed). I hope today will be better.

Donna is home

The title says it all. :)

Coming Home This Afternoon

Donna will be coming home this afternoon! This may mean fewer updates for a while.

Saturday Report

I saw Donna twice today. The second visit was after the Doctor had been by so I have some actual info to report. The doctor thinks she is doing remarkably well, given how much of her tongue was removed. He's really amazed at how well she is talking now and says she should improve as the swelling goes down and more healing takes place.

She is off of morphine and back on ibuprofen supplemented by Ultramm when needed. There isn't an infection. It turns out the steroids they were using to prevent swelling were elevating the white cell count. She's starting to come off those today.

He will be by in the morning to check her drain (from the neck surgery). If it is ready to be removed, it'll remove it and discharge her. If not, his partner will do so on Monday.

She's in good spirits, but is looking forward to being home.

Friday Morning Vist

I went out to see Donna this morning, she is more alert and now that she has her glasses, is writing messages. She can talk, but it hurts and she is a bit hard to understand. But it does not look like she will have to relearn how to talk.

Her doctor had been by and says she is doing well. Her white cell count is high, so they are watching for an infection. It could be something new (the mouth is full of germs, after all) or it could be the ear and throat problems she has been having that the doctors thought were just pain from the tumor.

If all goes as it is now, they will move her to a regular room this afternoon.

Surgery Finished

Donna was in surgery for about 4.5 hours. The tumor was somewhat deeper into the tongue than Dr. Lehr had hoped. Of course, it's very hard to tell such things until you get in there. So he had to remove more of her tongue than he originally thought he would, but he seems fairly sure they got all the visible cancer. (Microscopic stuff is another story, of course. Radiation treatment is likely to be sure.)

The also removed some lymph nodes from her neck. They were slightly enlarged (but all less than 1 cm). While neither doctor who saw the CT scan thought they were likely to be involved, Dr. Lehr would rather be too aggressive than not aggressive enough as the best chance to stop this type of cancer is to get it all the first time.

I saw Donna briefly at about 2:30pm in the ICU. I'm not sure she knew I was there. She definitely did not after they gave her some pain medicine. She looks somewhat better than I expected. I'm going back briefly later this afternoon, but am not expecting much reaction from her.

Drugs That Suck

Dr. Lehr took me off Ibuprofen today since there are bleeding issues involved with it and that's not something he needs with my surgery coming up. Last week, I came off the aspirin. So now I have zip in the way of swelling control and the high powered pain killers he prescribed do me just about as well as every other pain killer I've ever taken - which is to say nothing.

Hydromorphone is apparently given to those of us who have high tolerance for pain meds and has been quite successful. Well, I fall in the "not so successful column." So, for the next three days, it looks like I'm going to be eating a lot of ice, keeping my mouth shut and eating pudding, milk shakes and macaroni and cheese.

What I wouldn't give to be so freaking pain medicine tolerant.

Pre-op meeting with the doctor

Yesterday was a long, long, long day. Randall and I thought it was going to be a simple appointment with the doctor who will be doing the surgery next Thursday, but it turned out that it was that, plus pre-admitting, chest x-rays, blood drawing and meeting with other hospital people who have various jobs.

Anyway, that's done, and it turns out about the only thing on the surgery that we had right was the date. :)

Surgery is scheduled for Thursday, December 20 at Providence Hospital. I have to be there at the ungodly hour of 5:45 am since I'm the first surgery scheduled at 7:30. So we're there far earlier than I ever get up.

Also, Dr. Lehr has apparently thought long and hard about my weirdass pain medicine/swelling issues, and he's decided that after the recovery, I'm going to spend at least two nights in the hospital with the first one possibly in ICU because I'll have a breathing tube. So, I won't escape until either Saturday or Sunday...that date just depends on how things go.

It's also possible that I'm looking at radiation treatments after the surgery. That's another unknown right now. Ditto how much of my tongue will need to be removed (anywhere from 1/3 to 1/2) and whether or not a small skin graft will be needed to "tether" my tongue...that really depends on how much they take and how far back they have to go. Basically yesterday's appointment was a touch base sort of thing and getting a few more details and getting scared half to death hearing/reading the "bad things that could happen" list.

What I plan on doing is having Randall post a quick update here once he's home from hospital sitting with me on the day of the surgery. My mother is also coming in from Dallas, so Randall will have her support while I'm in the hospital. She'll leave the day I come home since we've only got two bedrooms and I'm going to have to use the guestroom as a recovery spot.

I'll post in with a quick wave, too, once I get home and am up to sitting for a bit at the PC (not sure when that will be).

LLLLOOOONNNNGGGGG Day

Did the pre-op meeting with the doctor which turned in to a four hour marathon at the hospital doing the pre-admissions, bloodwork, chest x-ray, and something else I don't remember.

Surgery is still on for Thursday, 12/20, but I'm going to have to wait until tomorrow to update the blog. I'm absolutely knackered.

So, tune in tomorrow for the update. :)

Surgery scheduled

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.

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.

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.)

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.

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!

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.

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. :)

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 .