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Post Surgery Update


wpoohn

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Hi Everyone !!! My surgery went great--at least that's what they are telling me.

My lymph nodes were clear---so they were able to go ahead and take the lower right lobe and hopefully I am now a survivor!

I'll know more next week after my follow up appointment---I don't know if the surgeon is still thinking maybe some chemo or radiation, or what's next.

He does seem to be a little more interested in my thyroid now and sent me home with double the synthroid dose I was taking. The following is the link to the page my sister kept for me while I had my surgery in case anybody wants to read the story---to log in enter: urban,

and password: sassy1.

http://thestatus.com/index.cfm?fa=patie ... id=5039003

I'll update ya all further when I feel a little perkier---the pains not too bad--but I'm still pretty groggy a lot of the time :)

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Your page is Id and password protected but thats ok. You are doing good so far. Hope they go with at least a shot of chemo for safety's sake. You have better odds with it than with out it...

Hugs and Prayers for speedy recovery. Double on synthroid may be just in case and to help out during recovery period.

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Good show — and you're already a survivor!

Let me hitchhike on something ts artfully implied (I'll be more blunt): We're frequently told to "stay ahead of the pain" and take the meds on schedule instead of waiting until things are really hurting. Good advice! But we're not often told of the very direct connection between many (probably most) pain meds and constipation, and learning that from experience is not pleasant. So my advice is to stay ahead of the constipation too. Take whatever measures you normally take and ramp it up some. Better to be a little loose than all plugged up, especially when you're recovering from surgery and every little effort can be painful.

No charge for this advice, just lots of Aloha,

Ned

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well-- I thought I was being a real trooper and doing pretty good there for awhile.

But--now I find myself in about a panic-- because my follow up appointment isn't until Monday morning, and I just realized this morning that I'm not gonna have enough of my pain meds to last til then.

I tried yesterday and again today to back off on it a little to see if I can get by on a little less --but that didn't turn out to be such a good idea. As soon as I cut part of the dosage-- I feel the pain start creeping in and then get to the point I start shaking and about hyper ventilating coz it hurts so bad.

I called the doctors office and am waiting to hear back from them. I hope I was able to make sense to the nurse so she understood what I was trying to say and doesn't think I just want more drugs.

Even if they can just give me whatever my step down meds will be, maybe I can hoard my good stuff for night time and when I totally can't stand it --- and have something to get by the rest of the time.

I had to take the anxiety meds just to get past the panic of being afraid of the pain.

It's crazy what I'm doing to myself---went from being great yesterday to whining and freaking out about pain today.

The roller coaster ride continues...

Deb

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Deb -

Sorry to hear this. Unfortunately, if what they gave you is a narcotic, they cannot call in a refill for you - the pharmacies won't accept that (I found that out the hard way). BUT - since you are a Cleveland Clinic patient, too, I know for a fact that they can overnight you a prescription to get filled - been there, done that. So keep calling so that they have the time to do that.

And hey, you are not whining - pain is not good at all and noone should have to deal with that along with everything else.

Good luck and keep us posted!!

Hugs - Patti B.

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The nurse got back with me in pretty good time, and the doctor gave the ok for something to get phoned in right away.

So---I am a happy camper now :)

The pain is minimal and the incision itch is thankfully more troublesome.

I have vicodin to use as needed now, so I can save my good meds for during the nites and for any rough spots over the weekend.

I let things get way too far out of hand, and it took way too long to regain control. I'm sure you guys can relate---and now, I understand the warnings completely. I will definately stay on top of it, coz I don't even want to go there again!!

I wouldn't wish what I felt today on anybody---but at least you guys understood the pain and the panic...

Deb

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Deb, I'm glad you made the call and it got resolved quickly. I was the world's worse about reporting problems and suffered a great deal unnecessarily. Wouldn't go that route again. Hope you have a comfortable weekend.

Judy in Key West

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I too hope you have a comfortable weekend and pain free.

Hang in there it won't be long till you will be completlely off the meds. But they are definetely needed for post surgery.

Thanking of you and so glad your surgery went well and most importantly your nymph nodes were not affected.

Maryanne :wink:

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I am so glad I called the nurse and got more meds for the weekend---And-- I am definately glad I didn't wait til I was completely out, coz the one vicodin every six hours he sent wouldn't have done much---it still wouldn't be enough to maintain me---I must be a real pain whimp.

I don't want my doctor to think I'm a druggy or something---but I do want to ask for enough of the right thing for the average person to be comfortable through this (in case he thinks I should be a lot tougher than I am)---is it appropriate to ask about that on here? I have no clue what or how much of anything it takes coz I've never really had to deal with pain and the meds before.

I understand I need to feel a certain amount of pain so I don't overdo things---and that I should expect to feel some----but I tend to start to draw my shoulders up---start to hyperventilate,and then turn into one big old muscle spasm when the pain gets past my management point.

I could be alot more comfortable now--but I am hoarding what meds I have now in case I don't have enough later.

Deb

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Deb, I'm hoping someone comes in who can be more helpful than I. I grew up in a grin and bear it environment so I tend to walk around complaining I'm in pain for a long time before it dawns on me to take something. Even I know that's not normal. But I think everyone has a different tolerance levell for pain and you just have to tell the doctor just what you said here--that you don't want to sound like a druggie but you need to know what's expected of you in this situation. I know they are very cautious about keeping people on narcotics because they are highly addictive. But my understanding is, if you get high that means you are taking more than the pain requires. If it's not making you high, then it is appropriately addressing the pain. That's about all I can offer, except to suggest deep breathing and relaxation exercises to keep the panic at bay.

Hope you get tolerably through until your appointment with the doctor.

Judy in Key West

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Hi Deb,

One thing is to make sure the meds match the pain relief needed. I had plenty of prescription drugs leftover - but the thing was, they weren't what I really needed. I had lots of shoulder and back pain they didn't touch; what I wanted was ibuprofen! I got an okay to take a little of it and that is what gave me the real relief. Brought down the inflammation and achyness. I have a pretty high pain tolerance and do not like pain meds in general (and they stop up the works royally.) The docs don't like ibuprofen as it is a blood thinner, but if your blood work is okay, they can allow it. They will tell you to take Tylenol, but it does nothing for me.

They definitely expect you to stay ahead of the pain - stressing over it or putting your body on offense is not good. Sleep, hydrate, relax and don't worry about taking too much pain med - you are strong and will know when you can taper off. And you will want to, you've got better things to do than put yourself out that way.

Stephanie

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I went for my follow up appointment yesterday and the doctor says am doing very well---Except for the pain management.

I am now supposed to try Lyrica with my meds to see if it will help, they think alot of my problem is being too sensitive to the pain because of my low pain tolerance, and my body producing too much adrenaline making me too tense to react naturally instead of fighting the whole pain process. My blood pressure and heart rate go sky high with the pain--but at least they can see it happening now and know what it's doing to me.

If anyone knows anything about the Lyrica--please share---I don't like what I've found on it so far, except that it may act on the nerves and that may be the source of my trouble.and am almost afraid to take it--I sure don't need to gain 30 lbs on it !!

My surgeon also explained what happened during my operation better, and why it took so much longer than expected---he ended up taking half my right lung---the whole lower lobe and part of the middle one---the lymph nodes were clear---but---the tumor had engulfed a couple of them because it was so big---the nodes were ok---but surrounded by the cancer.

So---I see him again in three weeks then on to my Onc---right now they are suggesting four rounds of chemo over two months to be sure.

I consider myself lucky that this thing wasn't aggressive enough to spread because it obviously had every opportunity to do alot more damage.

The prayers and good thoughts are obviously helping---and the advice has been invaluable---I'ld probably still be suffering in silence with inadequate pain meds without knowing I could ask for better and that I don't have to hurt.

Deb

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We appreciate the update Deb. I don't know anything about the new pain med but am impressed that they are able to monitor you and see what's going on and respond accordingly. In the old days they would tell us it's just in our heads. Amazing the progress we've made in medicine if you have great doctors like it sounds like you have. Don't worry about the weight gain right now. Many of us have had to deal with that since dx for one reason or another. A year down the line from dx, I'm trying to get serious about losing it LOL. Do what they say for the pain management and continue to do well. Keep us informed how things go.

Judy in Key West

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I went to the oncologist today---and will be having a port put in and then starting my chemo on the 24th.

I will be getting Cisplatin/Vineorelbine---in a 28 day cycle over 16 weeks.

He said that day 1 and day 8 will be long---but day 15 and day 21 will be short treatments.

Everything is happening so fast now---we chose this treatment because the oncologist said it would not be quite as harsh, I might not lose my hair, and I don't have a problem doing the extra 4 weeks---there is a hospital that my onc does a clinic at a block away from my house---I will do the extra time to maybe lesson the side effects.

My staging has been confusing ---we went over it some more today---the surgeon said 1B---but the pathologist said 2B---I asked for a copy of my report---the parts about the nodes all say clear---the margins are clear--but there is a notation saying:

"Multiple peribronchiolar lymph nodes involved by adenocarcinoma---see general comment"

then the comment says:

"The periibronchiolar lymph nodes containing adenocarcinoma are involved by direct extension from the adjacent tumor mass"

So--the picture the onc drew me showed that the tumor had gotten so big that it began to engulf the lymph nodes---I can be 1B or 2B---we are saying 1B (I think for psychological reasons)

My tumor size was 5.2x4.8x3.6----it also say that the mass abuts and encircles multiple bronchial and vascular structures--but does not appear to invade them. It extends to but not through the pleura and with 1.2cm of bronchial margin.

So---I continue to be a total puzzle to these guys--I'm evidently extremely lucky that this thing didn't get into anything more than it did---the report noted that the mass had evidence of hemorrage and necrosis---the only reason we found it is that I coughed up a little blood.

Soooo----I am trying to be optomistic about all this---and be thankful for what didn't happen.

Now I will be asking ya'll about the chemo and what to expect.

Deb

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