Introduction

[Guest marciaatl]

I just discovered this board this morning, and would like to keep in touch over the coming weeks.

First - a little personal introduction if that's OK. I am 49, married (though in the process of separating - yuk! - extra stress), with a 13-year old son. I work full-time for a labor union (love the job - no stress) and live in Atlanta. I'm a non-smoker, and generally healthy.

Medically, here's the deal. During my annual physical in May, my internist didn't like what she saw on the chest x-ray she does regularly (thank you!). She sent me for a CT scan, then on to a bronchoscopy/biopsy and I got a diagnosis on June 6 - just 3 weeks ago. I have Stage IB adenocarcinoma (maybe broncheoalveolar, but I am confused about the difference, or what that might mean, and the surgeon says it doesn't matter at this stage - ?)

There is a tumor, 3.4 cm long in my upper right lobe, and I am scheduled for a lobectomy on July 9.

A PET scan came out "clean" last week, and I am scheduled for an MRI of the brain shortly, just to be sure. The surgeon says there is a "1 in 1000" chance it got to the brain, but then my chances of getting cancer at all were slim . . . and I want to be sure.

I am nervous and scared and a bit bewildered by all of the information that flies back and forth in these message boards.

Right now, my main concern is surgery. I have asked the doc a lot of questions, but still am not entirely sure what to expect, never having had surgery of any kind before.

How much pain is there the first days in the hospital? Where? What does the chest tube feel like? What helped anyone to be more physically comfortable? Same questions about being at home? And energy levels, appetite levels, returning to work?

I have decided to get 4 to 6 rounds of chemotherapy beginning about 4 weeks after the surgery, based on that latest study showing the 5% benefit it brings. I'll have a jillion questions about that when I get closer to it, I suppose.

I intend to take selenium, Co-Q10 and probably some other vitamins. But it is hard to separate the "wheat from the chaff" when it comes to complementary medicine. Any really good books or websites?

I have wonderful support from my family, friends and co-workers. A lot of people sending thoughts, prayer, vibrations, whatever they believe in, and I welcome it all and send it all back out - to all of you too even though I don't know you!

Also would appreciate any tips on helping young teens to cope with all this. Our son actually seems to be not too scared or worried at this point - his father actually had prostate cancer (and a radical prostatectomy) last summer, so our son is not as afraid of the "C" word as most of my generation.

I'm glad to be on this board and look forward to tips on surgery, complementary medicine and parenting through all of this (soon as a solo parent).

- Marcia

[Eileen]

Marcia----welcome to the family----although sorry about your diagnosis

I had a lobectomy 3 years ago----I assume you are stage 1B due to the size of the tumor ----I was stage 1A---

I was lucky and the only problem I had was a leak in the chest tubes---which had me draining way too much fluid ---so I was in the hospital 9 days---they even went in and did another bronchioscope because they were afraid I was bleeding internally---I did not have a separation in my lobes---quite common I hear---so the surgeon had to make one and staple me up---chest tubes did npot bother me except when the pull them out but it is only about 5 seconds of pain

I had an epidural in my spine so did not really feel any pain in the hospital---when I came home, I was quite mobile and walked to the store and dust mopped my floor---I did not really take much pain meds as I did not really need it---except once in awhile when the incision started to heal---a heating pad helps

---I also experienced alot of indigestion---which I also hear is quite common.

I took alot of naps during the day though

I was back to work in 2 1/2 months full time

I did not have any chemo or radiation

although my breathing is not what it was, I am not disabled in any way and can do basically everything I used to

please let me know if you have any more questions

regards Eileen

nsclc lobectomy 6/00 stage 1A

[ginnyd]

Marcia,

My husband had his upper right lobe removed 12/3/02. He was in the hospital 5/6 days, don't remember. Two very important things:

1. Get the epidural

2. Get a pillow, or something, to use to hold against your incision when you cough or are riding in a car and you hit a pothole.

My husband came home with the chest tube because he was still draining. It wasn't much fun but it was not horrible. Since my husband is statge IV, but NED now, what else he went through would really not apply to you.

Sounds like your doctor caught it early which is the name of the game in having a cure. Good luck with your surgery.

Ask me any other questions you have.

[Guest DaveG]

Hi:

As you see, in my signature, I have had 2 surgeries for lung cancer. I can't really ad much, except to say don't be bashful about the pain medication. They put me on a pian pump and that thing is programed so it will not over dose. I also had an epidural and they usually leave that in so several days after surgery.

As far as comfort goes, I am 59 years old and I have a teddy bear. The teddy bear came into my life following the first surgery, when my wife bought me a teddy bear, as one of her little jokes. I picked the teddy bear up, found that it was soft and cuddly, and fit right around my sore ribs much better that the pillow ever did. That teddy bear became my "Buddy" and kept me real comfortable throughout my recovery period. I still have that teddy and he went along for the second surgery as well, and served his purpose again. The nurses would laugh about me cuddling my teddy bear, but they soon realized that is was giving me far more comfort than the pillows ever were.

Just an idea for you, it worked for me and it brought me some very loving comfort, because my wife didn't realize how far that teddy bear would go. By the way, On Valentines Day, 2002, Buddy got a girl friend, as I returned the favor and bought a teddy for my wife. Both these teddy's have a special place in our lives now.

[gail]

This is a great place to be and I'm glad you found us. I was 45 at the time of my surgery, and my son was 15. He did fine, because he's been through this before. I was stage 1A, bronchvieler (sp?), or BAC.

Prior to surgery I was on Buspar (anti-anxiety) and Paxil (anti-depressent), so my month before surgery was a little hazy. I had a bone scan and brain scan prior to surgery.

And I lived on the drugs the entire week in the hospital. I think it was first and epidural, then morphine, then demoral. I was a happy camper and came home with percocet. Took them regularly for the first week or so, and by my 4 week check up was off them entirely. The trick for me was to take them before the pain started, and then I was able to function.

Emotionally I was more of a wreck, and have stayed on the anti-depressents, and have been seeing a therapist. But that was more because it was my third cancer, and I had had enough. (duh)

I recommend anything by Bernie Siegel. All of his books are on tape, and I also used several of his meditation tapes.

Take your pillow to the hospital, and a cheap calling card. I used my MCI card one time in the hospital and had a $300 phone bill.

gail

[Donna G]

Ask if this surgeon is trained to remove the lobe by VAT ( video assisted thorocotomy) If the tumor is surrounded by good tissue , you have never had radiation to the chest or chemo , you may qualify for this instead of the old way of making a big smiley incision over your back, and breaking a couple of ribs, etc ( that is why a numbing epidural is so wonderful) The VAT procedure only involved making a couple of small incisions, and using a scope to remove the lobe of lung, much less scar, much less post of pain, quicker recovery. More and more doctors are being trained to do this newer procedure. Also after surgery, it has been recommended that you do get chemo therapy because of the significant number of people with micro metastasis the pathologist is unable to identify. Good luck , what ever way this is do able. then you will really join the survivor "club" Please keep us posted how your tests come out and how things are going. I hope you have more family and friends near you, we all need all the support we can get. I bet you son is scared too. Take care and keep us posted. Donna

[Gina D.]

DaveG!!! I did the EXACTLY same thing with a Teddy bear! You are just as wierd as I am I have that bear on my china cabinet, and I won't let him get out of my site!

OK..onto Marcia Hi Marcia! You'll do great.

Pardon my cut and paste, I just wrote this out for another post a few days ago, it answers some of your questions tho. My surgery was on 4-3-03. As of today, I hardly feel like it happened at all..well..compared to the time leading up to it and immediately after

I also saw my surgeon for the "almost" last time today for the follow ups. He still wants to check in with me next October.

Right after surgery, you will feel like a fleet of trucks has hit you, but each day, the # of trucks in the fleet will diminish It will be natural for you to think you abilty to live normally physically it is all over..and going from what seems to be perfectly healthy to the dehabilitaed literally in hours is hard to bear. It gets better quickly tho. Just remember that. and USE THAT BUTTON! Pain meds are your friend.

I am on month # 3 and what a difference from the immediate time after surgery! I had some comlications with the surgery itself and had an unusually long hospital stay (14 days) and was even sent home with a chest tube and drainage bag. That remained for a month after surgery.

The first weeks, I was pretty much out of it, and was limited in

movement because of the tube, but I managed to actually go out in public for a bit, toting the tube along!

In answer to what the tube feels like, well, it doesn't hurt really, it is more like a pressure in your side. Most folks don't have them in for long tho, you probably will think it's the least of the aches, actually. No, it doesn't hurt when they remove it.

Mine was in TOO long tho, and I had to take the 1000 dollar cab ride to emergency when I started experiencing excruciating pain with it. My lung had expanded so much, so quickly, that it pressed the tube against my ribs and it took shots of dilaudid to take the pain away. Surgeon removed the tube the next day.

Once the tube was removed, it seemed like you could measure my

improvement by the hour. I was up and around, walking quite a bit, able to acheive small chores around the house and could bath myself. I was doing laundry on my own within two days of tube removal.

A week later, I was able to withstand a 1000 mile road trip in the

comfort of a motorhome from LA to Portland Oregon, where I was

taken in by kind friends who supported me and took care of things for me while I rested up.

I was driving within 5 weeks post surgery (auto tranny, but a BIG pick up truck) and working on my computers and doing social things within 5 1/2 weeks.

After 4 weeks in Portland, and I drove MYSELF and my two dogs back to southern California. I took it easy, spreading the drive out to 3 days. I was in a rental with an auto tranny, but quite easily jumped into my own car, a 5 speed and could handle it pain free, no problems. My lobectomy was on my right side..gearshift country!

The only ill effects I feel right now are lots of rib soreness and

shortness of breath in the heat and after certain types of exertions. I am sure both will go away with time.

I got a bike and ride it every day, I even went camping with it last weekend and rode 20 miles on saturday..no biggie!

What they do to your ribs is not pretty, and I am sure you have

researched this. No way to sugar coat it. You WILL be sore, but it is tolerable after a short while. I used a heating pad, and valerian as a natural muscle relaxer to make it almost a presence, and not really a "pain". Lots of pillows, as mentioned, helps a ton.

I had a long term nerve block that my surgeon offered as an option. My right chest wall and the area of the incision is still quite numb. It is exactly like what your face feel like when the dentist gives you the BIG shot of novicaine. It feels odd, but I was gratefull to get it. I don't understand why anyone would not opt to have it. The block does nothing for the rib pain however.

You might note that the pic of me here was taken on week 6, post

surgery. Doesn't look like anything was wrong at all.

Good luck to you on this! I hope it all comes out well for you! I have no kids, so I am no help there, nor have I had chemo, but a "few" folks around here have. I think you'll get some good help from them.

[kimblanchard]

Pain pumps are wonderful things. But beware they can, and ofter are, set up incorrectly. Depending on the training of the person setting them up. A nurse set one on my father to deliver Dilaudid, but it was set to deliver Morphine. He was overdosed, in a coma, almost died. Hallucinated for three days. Was never mentally himself again. Because of the severe resp. depression suffered, he got pneumonia, and died a week later. Now if the doctor puts in it and sets it during surgery, that is a much better scenerio. Many nurses on the floors just do not receive the proper training to set them up. As a nurse I have seen this happen more than once which is why when they set up my dad's I questioned them for 30min to ensure she knew what she was doing??? Oh well, YEAH---DUD.

[Guest]

Hello Marcia - You are scheduled for surgery on the very same day as I had mine, July 9th...mine was in 2001. I, too, was diagnosed with the same type of cancer, same stage, and my tumor was 5-6cm. I was damn fortunate -no mets. You have asked a lot of questions. And I'm not computer savy, so don't know how to flip back and forth to answer them all...but what I remember:

Take the epidermal! It's wonderful. It was all I needed for pain while in the hospital, and when I was dismissed, I was given a prescription of oxycontin. I used the oxycontin for about 6 days, then took myself off of it...and I really started doing well then. But..watch out if I sneezed! I'm sure my cries rattled the pearly gates! I had my entire left lung removed. I think I was in a fog before my surgery...I just kept looking past it to things I needed to do when I healed and was well again. So, I was shocked , a year later to find out that a total lung removal is serious. Duh! Had I dwelled on that before the surgery, I think I would have bolted off the operating table. But, I made it through, and so will you. My tumor was growing over both lobes, and was pressed up against my heart and major airway. So, it would have been considered inoperable just 5 years ago. But, new ways! I was given chemotherepy (taxol/carbo) to shrink the thing down, first, before surgery. It worked. When they took my lung out, and excised the tumor from it, all cancer cells in thetumor were dead. I had no cancer in my lymph nodes either. Do not be afraid to take chemotherepy. Yes, you'll hvae some discomfort...mine was deep bone pain, neuropathy in both feet,total hair loss over my entire body (I loooked like an aging virgin...I'm in my 60s)and I had an interesting experience with diarrhea while bending over the onions in the produce department at my grocery store! But you know what? Inspite of all of that, I would LEAP into that chemo lounge chair again...it gave me LIFE! There's all kinds of medication for nausia now...I took the pills and did not have any nausia. And I had pain pills for the bone pain, and I bought cute hats for the bald head...but eventually went without them because I chose to do so...the hats itched my scalp, wigs were never an option and I figured people might as well see the picture of cancer, like it or not. I was more comfortable as a baldy than any other way. I guess I figured it was THEIR problem, not mine. I don't mean to make light of a very dreadful, life threatening situation...but, a merry heart doth make good medicine. I bought Garfield comic books...I rented comedy videos, I asked my support group to send me the funniest jokes they knew...and, wow, did I get some goodies!...it kept my spirit in the right frame. You are not going to die until God says it is your time...not one second before your time, and not one second after your time. So, your mission is to get through this thing and LIVE LIVE LIVE...ONWARD! Ellen Lilja [/b]

[Guest]

Hello Marcia - You are scheduled for surgery on the very same day as I had mine, July 9th...mine was in 2001. I, too, was diagnosed with the same type of cancer, same stage, and my tumor was 5-6cm. I was damn fortunate -no mets. You have asked a lot of questions. And I'm not computer savy, so don't know how to flip back and forth to answer them all...but what I remember:

Take the epidermal! It's wonderful. It was all I needed for pain while in the hospital, and when I was dismissed, I was given a prescription of oxycontin. I used the oxycontin for about 6 days, then took myself off of it...and I really started doing well then. But..watch out if I sneezed! I'm sure my cries rattled the pearly gates! I had my entire left lung removed. I think I was in a fog before my surgery...I just kept looking past it to things I needed to do when I healed and was well again. So, I was shocked , a year later to find out that a total lung removal is serious. Duh! Had I dwelled on that before the surgery, I think I would have bolted off the operating table. But, I made it through, and so will you. My tumor was growing over both lobes, and was pressed up against my heart and major airway. So, it would have been considered inoperable just 5 years ago. But, new ways! I was given chemotherepy (taxol/carbo) to shrink the thing down, first, before surgery. It worked. When they took my lung out, and excised the tumor from it, all cancer cells in thetumor were dead. I had no cancer in my lymph nodes either. Do not be afraid to take chemotherepy. Yes, you'll hvae some discomfort...mine was deep bone pain, neuropathy in both feet,total hair loss over my entire body (I loooked like an aging virgin...I'm in my 60s)and I had an interesting experience with diarrhea while bending over the onions in the produce department at my grocery store! But you know what? Inspite of all of that, I would LEAP into that chemo lounge chair again...it gave me LIFE! There's all kinds of medication for nausia now...I took the pills and did not have any nausia. And I had pain pills for the bone pain, and I bought cute hats for the bald head...but eventually went without them because I chose to do so...the hats itched my scalp, wigs were never an option and I figured people might as well see the picture of cancer, like it or not. I was more comfortable as a baldy than any other way. I guess I figured it was THEIR problem, not mine. I don't mean to make light of a very dreadful, life threatening situation...but, a merry heart doth make good medicine. I bought Garfield comic books...I rented comedy videos, I asked my support group to send me the funniest jokes they knew...and, wow, did I get some goodies!...it kept my spirit in the right frame. You are not going to die until God says it is your time...not one second before your time, and not one second after your time. So, your mission is to get through this thing and LIVE LIVE LIVE...ONWARD! Ellen Lilja [/b]

[Tiny]

Ellen,

I LOVE your spirit And your sense of humor bowled me over. Hope to hear more posts from you.

[David P]

Ellen Lilja??? Is that you???

I've been wondering where you have been, and was hoping everything was OK. I replied to a post of yours way back in November - you were wondering how long it would take to get back to normal, climbing all those stairs, and keeping up with your grandkids on around the block walks. It's really good to see you on the board again. Breathing has improved I would imagine? Let me know how you are doing.

David P.

[Guest]

Hello MARCIA, David and Tiny...I don't know how else to answer your emails to me because when I click the "send email" box, it flips me to another sign on page which does NOT recognize my user name nor my password...Rick finally got me into the chat room by opening up a back door...so I'll contact him again on this one...maybe this time he will drop me through the roof.

Marcia...I will be praying for you on July 9th...as you recall, that is the same date I had my left lung removed in 2001...each year on that date, my husband and I have split a bottle of wine in rememberance of my pneumonectomy and we tip our glasses to the oncologists, surgeons and nurses who gave to me their very best...so, with your permission, I'll tip a big one to you and to your cancer team on that day as well! But you know, it is the Great Physician who guides all of our treatment and care...we thank God for his divine attention to all of us and our cancer teams.

Dave - my breathing is about the same...but I'll take it! considering the alternative. Altitude is a real downer (no pun intended) for me...and we do travel alot. They tell me now that my right lung has developed asthma. Pulmonolgist gave me an oral medication that made me quack whenever I spoke...Since Donald Duck is not my idea of verbal communication... I quit it. My wheezing since has subsided. And to see you on your mountain bike in profile picture makes me wonder - when are you going to challenge Lance for the yellow jersey?

Tiny - Thank you for your note...I live in Albany, Oregon...about 6 or 7 hours from Yakima, I think. When Mt. St. Helens blew her top, we felt it in Albany! Rattled our window panes! Your picture looks perfect for your name...Tiny...my picture would nickname me,

Dolly (with the dimpled knees.)

Thank you Marcia for letting me use your posted message to answer Dave and Tiny...I must find a way to do it differently. July 9th will be a great day for you...it is the first day of the rest of your life without that cantankerous, high faluting, son of a biscuit, parasitical, down right obnoxious, lop-sided and uninvited cancererous tumor! Get it out of there!!!! ONWARD! Take care...Ellen Lilja

[Guest marciaatl]

Thanks to all of you who have replied to my original introduction. The tremendous support I have received from family, friends and new friends has been amazing!

I feel I am as prepared for surgery tomorrow (show-time is 6:30 a.m., with surgery to begin about 8:30) as I can be. A little bitty sedative at dinner time tonight to help me sleep (the surgeon's assistant actually said if it were him, he'd prefer a glass of wine!), and then onward.

My father, son and husband will go with me to the hospital (lots of male energy) and I am taking various meditation tapes and calming music tapes along, too.

Thanks again for all the prayers and positive vibes - I know they will help. By noon, I'll be set out on the next leg of this journey. It's going to be an interesting one!

- Marcia