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Debi

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Well, I finally know what board to post on! I got home from Tulsa yesterday afternoon and am in my recuperation stage.

The surgery was, as you all know, God awful but it was doable. As my daughter wrote in a previous post, the surgeon took out my upper and mid right lung and also lymph nodes. The only cancerous results came from the original nodule itself; the rest of my lung tissue and the nodes were clean. My surgeon said I will be having 3 month follow up appts for the next 2 years to watch things.

I think my biggest shock was that for 6 days I was interupted every 4 hours and given breathing treatments, massive antibioditics, nausea pills, etc and then on the 6th day I'm disconnected from everything and sent home with a prescription for pain pills clutched in my hand. I mean, there are no instructions for my wound care or what if I get pneumonia, etc? I feel like I should be in a half way house or something for a few days! lol

The pain pills are a good thing though. I am told they have a high street value so I may have solved my little $170/week disability problem. Only kidding OF COURSE!!!

Anyway, no one had told me about gaining weight after surgery. I brought this little summer dress that barely fit me to the Cancer Center with me since I KNEW for sure that I would lose weight while there. Ummm. I stepped on the scale and had gained 12 pounds in 5 days. They tell me that surgery will put weight on because of the fluids??? Does this disappear automatically or will I cough it up or what? Can a woman do ANYTHING and not gain weight?? My whole torso, particular the right side seems to be numb under my breast and I seem to be having problems with being "regular". Also, I seem to have numb "spots" on my face and nose. My legs also feel wierd, a bit on the numb side, not sure if thats from the swelling of water or aftermath of the epidural. Then of course I have the pain where the chest tubes were..told my friend it feels like somebody stuffed flaming socks into my body. This was, of course, after taking my new pain pill.

Anyway, going back to join my 150 pillows in bed. If anyone has any helpful hints about any of above, feel free please. Again, thanks again for all your support...it is becuase of you that I didn't dread the surgery as much as I would've. And yeah, it hurt, but worth it!

Debi :lol:

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Glad it went so well for you Debi!

(I haven't had any surgery - and give you 10 gold stars for being so positive about it all!)

To the best of knowledge, I think the numbness can be attributed to the anethesia or epidural.

Wishing you the speediest of recovery's!

Hugs and prayers,

SandyS

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Dear Deb,

Would it be possible for your surgeon to arrange a visiting nurse for you? I had complications after surgery and was in the hospital for 11 days. When I got back home (actually a hotel near the hospital) I had a visiting nurse twice a week for 5 weeks. It gave me peace of mind. They are able to teach you about wound care and take your vitals. She also put me on a light "walking" program. One day, my blood pressure was extremely low and she was able to tell me to drink more water--who knew! They stay in touch with the surgeon and report any problems.

I also learned a lot about what the body goes through after surgery. Basically, things stop and you may need some medication to help you go to the bathroom and become regular again. Over the counter medicine will help you in this department. Are you on oxygen. I needed that for about 4 months after the surgery.

Did they give you prescriptions for antibiotics, diuretics, and other medications you may need? It seems like I had many prescriptions. And I also had a spirometer that I needed to use for breathing exercises.

About weight gain--my weight went up 23 lbs in the ICU. My Mother and sisters cried when they saw me because they didn't recognize me. The 23 pounds came off before I came back home to Georgia. Don't worry about your weight.

The surgeon also recommened that I buy a few sports bra--that would almost work like a girdle to help with healing. He also told me to take 3 hot showers a day--I never did the 3. Also, I don't know what I would have done without my heating pad.

You've come a long way on the road to recovery. Be patient. This is really very major surgery. It sounds like you are strong and can handle this.

I am thinking of you,

Ada

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I'm happy everything went well. I had surgery 2 years ago and also had some numbness under the breast. I was told it was because the nerves were cut. It diminishes over time ...for me about 1 year. As for the other areas of numbness, I haven't a clue. Anesthesia does cause irregularity. Hope this helps....and that you have a quick recovery.

Nancy

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Debi,

No, I haven't had surgery, and my dad isn't a candidate, just wanted to congratulate you on coming thru it with flying colors (-the 12 pounds of course!! :lol: ) You are sure one TOUGH cookie! Your post had me rolling - you are a hoot! WIll keep up my prayers for your quick recovery. Keep us posted and we will be praying for yoU!'

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Glad you are home and reasonably well. Take it slow !!! Be a baby for a week or two. And take those pain pills for now, along with a :shock: stool softner :shock: . No one told me about that problem with my mastectomy. That was the worst!

I found the tingling and numbness to be interesting. I think it is the healing. I could feel the healing move across my body. I still have numbness and some soreness even two years later, but I have so much scar tissue there from surgeries . . .

I was moving quite well after six weeks. After 8 I was off on adventures: The beach, San Antonio (even in the heat), and Niagra Falls.

I just have to watch the heat now and hills are not always easy (thank goodness I live in South Jersey)

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Hi the numbing by the right breast is normal-----I had this for a good two years after the operation---the breast itself is also very sensitive

don't ask me about weight gain----I gained 40 lbs----this was mostly due to not smoking and pigging out all day long---there was nothing wrong with my appetite

I am so glad that your nodes were clear---this is very good news for you

also you may experience indigestion problems for several months ---I knoiw many people that do after the operation although the surgeon said it is not from the operation

I'll bet the first shower felt good---I could not wait it was heaven to me

If you have any questions, please feel free to ask

regards Eileen

nsclc upper right ;lobectomy 6/00

stage 1A

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Glad all went well!!!! And i have to laugh about the street drug value!!!!!! haha it is true it is hard for you NOT to enterain the thought even if it is only in the head!!!!! Trust me I have for my mothers sake but OBVIOUSLY would never. But i had to laugh :D

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Debi, please be sure to do "range of motion" of your shoulder. Have some one help you by moving it for you if need be. Most of us tend to guard and keep that shoulder stiff, which puts you at risk of it "freezing" . I did not realize this and later ended up having to get cortisone injections, and physical therapy. Move the unaffected shoulder and see how many different directions it goes, up, down, forward, backward, sideward etc. Then do the same with the right one. Down the road you will be grateful you did. Keep us posted on your recovery. Donna

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Thanks for all your replies as always!! And Ada, I asked my doctor about some kind of home health nurse and he said that unfortunately, most insurance companies will not cover it for follow up care for this type of health issue. I don't have oxygen..they took it off the 3rd day because I am maintaining a rate of abouve 95% oxygen without it. But you are right, it would be nice to have these things "checked" once your'e home.

I am trying to wrestle with how much to do and not to do. I'm not sure how much I should stay in bed and how much I need to walk around. I don't want to underdo or overdo it. I can still barely hit 1000 on that spirometer thing but continue to try to get higher. At this point, I'm kind of just listening to my body and "force" it up from time to time, walk around a bit, get on computer a bit and then walk back to bed and sleep. This afternoon I am attempting my first shower since I'm home..I have a claw foot tub so this should be interesting. If I don't post within the next 2 days or so, call the police, I'm trapped in my tub!! LOL

Again, thanks for all your support and appreciate all your coments!! Sorry for the typos...I've decided this is good therapy for my right side but backspacing kills me so I let the typos fall where they lay!

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dEBI, SO GLAD YOU ARE BACK HOME AND HOPEFULLY DOING GREAT! I PERSONALLY THINK THAT WHEN ONE GETS BACK TO THEIR SAFE HAVEN THINGS TEND TO GO BETTER (EVEN THOUGH AT FIRST IT IS A LITTLE NERVE RACKING).

I NOTICED YOU ARE ON THOSE PAIN PILLS. IF YOU ARE FINDING YOURSELF SHORT OF BREATH AFTER YOU TAKE ONE IT MAY BE THE MEDICINE. MY HUSBAND COULD NOT TAKE ANY WHEN HE GOT HOME BECAUSE ONE OF THE SIDE EFFECTS ON HIS PAIN MEDS WAS SHORTNESS OF BREATH. THEY TRIED FOUR DIFF MEDS AND ALL MADE HIM EXPERIENCE BREATHING PROB SO HE GOES IT WITHOUT.

WHEN YOU GET BACK ON YOUR FEET YOU SHOULD TRY WRITING SHORT STORIES, FOR I SURE DO ENJOY WHAT YOU SAY IN YOUR MESSAGES. YOU HAVE A GREAT GIFE IN WRITING......WATCHOUT $170 A WEEK HERE COMES THOUSANDS.......

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Thanks Norme! I'm feeling better and better every day, believe it or not!

Thanks for the idea about writing short stories...its actually one of those things I always wanted to do and never was able to follow it through. Maybe, now that I do have time on my hands, I can try to write one (or better yet, finish one)! Thanks for your vote of confidence!! :D

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  • 2 weeks later...

Debi, I am so glad you are doing so well. I had surgery in Feb. and went through all of the same things including the weight gain. I have joined weight watchers but it just seems to be staying with me, but they said that my metabolism will wake up one day soon and the weight will come off. My surgeon told me the numbness will be there for a quite a while. Boy you were able to sleep in bed quicker than I did it was a month before I could even with pillows. I did have home health care when I came home twice a week for three weeks which was a godsend. About being regular, that was also a big problem but I did have one home health care nurse that had an idea that helped with that. I was already taking stool softeners and it wasn't helping they told me to drink a small glass of prune juice each day and to warm it in the microwave and that really does work. I hope this helps with that problem.

It is true about moving your arm mine was getting very painful but it is better now that I have been exercizing it. I did find a great exercize program on the net for lung cancer patients that you might like to check out www.cancernetwork.com I have been doing them and it has helped a lot. I have found that my body lets me know when I am doing to much. When I first started moving around they told me to walk that was the best thing. To begin with I could only make it two houses from my home but it has gotten better. The heat really bothers my breathing when outside. TJ

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TJ.

Thanks for the website for the exercise!! I really appreciate it. I am feeling better every day..I'm kind of disgusted that I still have pains and trouble sleeping at times, but its only 3 weeks from surgery so I guess it is to be expected.

I went for my 3 week post op appointment with my surgeon yesterday and he said I am doing good. Easy for him to say!! :roll: I still have pain but it is definitely manageable and every day I seem to be able to do a bit more. The dead feeling and pain in my right midsection is the thing that is driving me the craziest!!! I can't even explain what it feels like but I guess people that have had the surgery know!

Thanks again!

Debi

46 years old

Stage 1A NSCLC

Surgery June 16, 2003- upper & mid lobe removed, right lung

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Hey Debi.

You crack me up! I love your humor. You also take me back 26 years to my surgery and the pain and numbness I felt. As I read your post I reached around to touch my scar, and sure enough, there is a section at the bottom of my shoulder blade that is still numb and hurts when pressure is applied. I really laughed when you mentioned drugs because it reminded me of when I would take two secenol sleeping pills each night and stay awake to get a pretty good buzz; the buzz was always better than the sleep. Sounds like you're on a good road to recovery. The range of motion exercises are good, but don't forget to work in some light breathing exercises like climbing a few stairs a couple of times a day. Take care Debi,

David P.

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Thanks David. Just wanted to say that you, and others like you, are an inspiration to me and I am just so glad that you "remember" and come to this board!

I don't post much anymore now that my surgery is over as far as my own posts, because sometimes I feel bad griping about what are minor things in the giant scope of things here. For instance: My surgeon told me yesterday that my odds, in this type of cancer, is 70% that it won't recur. Those would be really good odds for so many of the good people on this board; and meanwhile, the figure 70% just keeps spinning round in my head. To me, 70% is disquieting. It terrifies me that I have a 30% chance that this hell may come back.

I'm also struggling with trying to decide whether to quit my job which I have grown to despise. A new company came to town and I have actually managed to get through 2 interviews without letting on that I have had surgery. I laughed when I read your advice about climbing stairs...when I went for the 2nd interview today, the dirt road to the hiring trailer was all dug up. My only option was to park on the street (this is only my 3rd time driving the damn car) and climb up this deep, dirt embankment, over this muddy hill and walk across this tire rutted dirt and mud parking lot to get to the trailer. I remember parking the car, standing in the street looking at what I had to walk over and thinking "Oh shi_!!!". I hesitated, weighing my options which were basically NONE...and started walking in my heels. About 10 minutes later I ended up at the trailer, gripping the railing and gasping for air. Talk about Extreme Job Interview!!! :lol:

Anyway, I have to let the manager know within a few days if I accept his offer. He wasn't able to quite meet my current salary because all the department manager jobs have been taken but offered me something that was close. I really want to leave my current job but that 30% keeps rising in my head....like, what am I stupid to want to make life changes now? Maybe I should wait..but then I will lose the opportunity to get in the door of this company. I won't have to start at the new job till September or so, so I won't have to worry about recovery. But I don't know if I'm in some sort of denial, and should just sit tight where I am. THis is all so new to me...to actually have some type of limitations...even if they are short term. And this new job will be slightly competitive..will I be able to perform as well as I have at jobs in the past? And what if I have a recurrence? Will they be understanding? What about insurance..will they cover my conditon and my follow ups? I find myself with all these questions that I never had before ... this is all new to me. I never had to worry if I would be able to "keep up" before.

Oh well, I ended up writing another novel. That's what happens when its 4:30 in the morning and there's nothing to do! Again, I don't mean to whine about trivial things when this disease is so much about struggling to live. I feel petty complaining but this "stuff" in my brain is starting to bog me down. Again David, thanks for coming here and giving away free hope!! Thanks to all as well!

Debi

46 years old

Stage 1A NSCLC

Surgery June 16, 2003- upper & mid lobe removed, right lung

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Hi I understand how you feel-----although I adore my job, I have such a long commute (3 to 4 hours daily) that I was thinking about going back to my old job closer to home-----however, they did not have much in the way of disability, my current job has full pay for 12 weeks, and long term 70% pay---since I am by myself and own a house, I worry about a reoccurence---and cannot live off of $170 a week disabilty ---plus I hated my old job---

usually insurance in a new company will cover your condition as long as you have continuous coverage----(at least in NY) so if a new company will not start your insurance until 3 months, then you should carry cobra for the three months----without telling your new company about your operation, you should inquire about the insurance coverage--plus disability-a normal question from anyone---.

I certainly understand your fears and live my life from scan to scan----for example if this scan is ok, I will then buy something knowing I will be able to have 6 months to pay it off (till the next scan) this is 3 yrs post lobectomy and I still do this!!!!

I know people say your health is more important, however, if a reoccurence occurs, you do not need money worries on top of this---

glad to see you are recovering and hopeful that you will make the right decision for you

Regards Eileen

nsclc stage 1A lobectomy 6/00-

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Hey Debi, and anyone else out there that worries a lot.

You don't need to!!

Life is too short already to waste energy with worry; there are a million

"what ifs" out there to each of your situations, and gauranteed, you'll find all of them if you spend the time looking for them. You can still live life as if you may not be around too long - which is actually the fun part, because

if you're not worrying about stuff that will normally limit what you do, you'll go out and do things that you wouldn't normally do -- AND HAVE A GREAT TIME!! Don't just be a survivor. I haven't spent the last 26 years just surviving -- I spent it living! Be a "living life to it's fullest survivor". You can't live a full life if you're constantly worried about a recurrance. Let the doctors do their job; you do whatever you do to increase your chances of staying healthy - eat well, exercise, take more drugs if you have to - and if your cancer does come back - fight it with all you've got again!! But don't not take the job, or buy that new car, "cause I might not be around to pay for it" - DO IT!!!

Debi, take the d.a.m.n. job. Have fun. Meet new people. Join an exercise club. Never take an elevator again - because that's what two lunged people do, and you're not one of those any more! Your remaining lower lobe will continue to get strong and expand; my last lung capacity test showed my right lung is at 64% that of a "normal" two lunged guy my size. You know we're the same age? What is your birthdate? Mine was July 3rd.

Take care Debi, and no worries kiddo. Your friend,

David P.

And get some sleep!!

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Debi-

A STRONG DITTO to everything David P. said. Ya just gotta love that guy's attitude and zest for living.

Two things NOT to worry about: 1. Those things you can't change. 2. Those things you can change.

Go for what makes you happy and less stressed! Some of the details will work themselves out.

Wishing you the best.

:D

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Thanks for the responses. Eileen..I always appreciate your posts...you have this quiet strength and common sense and I identify so much with you and what you say.

Tiny and David...thanks for the encouragement. I think I will take the d.a.m.n. job...I've never actually lived safely before...why start now? :lol:

I'm going to continue trying to decide...but will give the fact that I am "sick" less importance in my final decision. Soon I will start thinking like a well person again, I hope....thanks to you guys!!

Oh, and my birthday is August 19th...my sister's birthday is July 3rd tho!!

Happy belated birthday David!!!

Debi

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