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Debi

50/50 chance

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I'm 46 years old and back in February my doctor found a small nodule in my right lung on an xray. Since then I have had 2 Cat Scans and a Pet Scan. The Pet Scan showed no malignancy. That was good news, but it also could have meant that the nodule was too small to really show. The 2nd Cat Scan I had done in April, to see if the nodule grew. It had, about 2 millimeters, so I was referred to a Pulmonary Specialist. He turned out to be a bit of a jerk, so I found another one and liked him. He sent me to a surgeon who has scheduled me for surgery on June 16th. The Specialist told me that there is a 50/50 chance that its lung cancer..if it is benign they will just take out the wedge, if cancerous will take out the lobe of my right lung.

I've been living with this for several months now so have had time to "adapt" (as much you can) to this whole ordeal. I guess the scariest time was waiting for the results of the 1st Cat Scan, to see just how big the nodule was and whether there were more. Im numb now..I am dreading the surgery, I have never had major surgery in my life. I also have a 4 year old at home, who is constantly on my mind. I guess my biggest question would be how bad is my recovery going to be after the surgery? I'm sure everyone recovers differently, but I am dreading this so badly and would appreciate any input on the surgery and its aftermath. And don't worry...nothing could be as bad as I'm imagining! :0)

I try not to think about 2 weeks from now, but the closer it gets, the more it tends to slip into my mind and take up residence there. If anyone can say anything to put my mind at ease, I would appreciate it..honestly, I'm terrified. Thank you all!!!

Debi

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Hello Debi; Welcome, glad you found us, no one has to go through this alone.

First, I'll hope and pray for no cancer!!, but if it is then it sounds like it was caught early which is a very good thing. I had my left lung removed just over two years ago and like you the waiting and wondering terrified me. And, I will tell you I made it allot worse in my head than it really was, at least for me anyway. I was 50 years old at the time and in pretty good shape. I was up and walking the next day after surgury, on pain meds of course, but still up and about. I went home 4 days later with no complications, yes there was some discomfort and pain, but really not much. I had oxygen at home for about a month, I used it mostly at night to help sleep. I was on pain meds for about 6 weeks, back playing golf at 3 months and back to work in 5 months. So, hope that helps, but we are all different, and some times complications do happen.

Also, I would make sure I had a good thoracic surgeon, meaning one that has performed many of these type surguries and don't hesitate to get second opinions

I know you will find much support, good info. and wonderfull people on these boards. So hang in there and keep showing up.

Ohh, and the family pic. is me ,my wife and son. We are 150 feet above a gorge on a rope bridge in the rainforests of Costa Rica, That Was 8 WEEKS AFTER SURGURY. :shock::shock: It was'nt easy but was doable.

God bless and be well, you will be in my prayers

Bobmc - NSCLC- stage IIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Dear Debi,

Hi and Welcome. You are right when you say that everyone's experience with surgery will be different. I had surgery in January--finally after 1 1/2 years of treatments. Surgery was a challenge and the recovery was a challenge because I had been through a lot before the surgery and the tumor was in a very tricky place right next to a major blood vessel. I was very lucky to have a highly skilled thoracic surgeon as my doctor. I was in Intensive Care for 5 days after the surgery and in the hospital a total of 11 days (this is not typical). I was on oxygen until last month.

I am telling you this not to scare you, but to let you know that I would do all of this over again because that tumor, near my vena cava, was more threatening to my life than the surgery. I knew this and wasn't at all afraid of being operated on. I have often said that I am much more afraid of the cancer than any of the treatments.

Your son needs his Mom around for a long time. Getting the surgery over, whether they find cancer or not, is a means to that end. You both deserve a long and happy life together.

No need to be terrified of all of this. Just do what they tell you to do and you will be fine.

One question--is your surgeon a specialist in lung cancer surgery? Having faith in your doctor and the hospital you will be going to will make all the difference as you get closer to the date of your operation.

Take care and have courage. You can do this.

Ada

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I was 45 and had a month between finding the nodule and the surgery. At that point I was on anti anxiety AND anti depressent drugs. Like you, it was not clear what the nodule was. I was told a) breast cancer that had spread

B) lung cancer, or c) none of the above. Like you, they were taking out the wedge, do the biopsy, and go from there.

The good thing about the surgery was that I woke up and it was done. No diagnosis and then waiting for results. I woke up and they said "lung cancer". And they told me that was better then breast that had spread. I was reluctant at first to use the pain med IV, until the surgeon told me it was fine. I did not become addicted to morphine or demoral, but they sure were my friends in the hospital.

Recovery the first two weeks can be slow. I've had lots of surgeries and have learned through mistakes to lay low for a week, and seriously do nothing (cleaning, cooking, laundry) for a week. Too much too soon will only aggrevate the surgery. Take the pain pills religously at first. If you wait for the onset of pain it is too late. I could tell by my body that it was time to take another. I did this and was off them before my four week visit to the surgeon.

Do you have family around? Someone to help with the four year old? My kid was 7 with my first cancer and spent my first weekend home at his aunt's catching tadpoles. He cried when he left me, but didn't want to come home then.

I also had a surgery when he was four. Prior to surgery I had all laundry done and clothes put away in piles and labeled, becuase my husband had no clue what was play clothes and good clothes. I also did a big grocery shopping and paid all the bills.

My best hint??? Get a pedicure and massage the day before. You can't do polish, but I said if I'm going to be in bed for a week, I want my heels soft.

Good luck and stay in touch.

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Debi,

My husband had the upper right lobe removed 12/3/02. This was after having brain surgery in Oct. and whole brain radiation so his body was already abused.

The surgery was tough but NOT horrible. He had an epidural with a button for pain meds. Don't be strong - sissy is the right word here and take the pain meds.

He has recovered wonderfully from the chest surgery. And EVERYTHING you read indicates that surgery offers you the best chance for cure.

Do what Gail said and get that manicure and pedicure and I add hair cut and maybe a massage before the big day.

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Is it possible to have a biopsy? Depending where the nodule is - it may be possible. Also, you could ask about a medianoscopy - this will allow the doctor to check the chest lymph nodes.

Don't want to scare you, but sometimes surgery is done and it is found that the lymph nodes have cancer cells in them. This happened to my mom.

The best treatment *I believe* for IIIA at least is chemo first then surgery. So it is important to get properly staged.

I personally would want the surgery as it is the best chance for cure.

http://www.nccn.org/patient_gls/_englis ... /index.htm

Take care

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Debi,

I agree w/John. You need much more info BEFORE surgery is attempted. You need to see an oncologist (NOT a pulmonologist, unless he is a lung cancer specialist which he probably isn't because he would then be an oncologist) To operate on you w/o complete information is extremely hazardous!!!!!

Please see an oncologist. Preferrably one in a cancer center. You'll probably need some MRIs, perhaps more CTs (with & without contrast). If you get to the point where surgery is going to happen, you need a Thoracic Surgeon who has LOTS of experience w/lung cancer!!!

You can find approved cancer centers online. John probably has that info at his fingertips. Where are you located? Someone on this forum is probably near you.

Please don't let this guy operate on you!!!!!!! If I'm scaring you, GOOD! Don't let this guy operate on you!!

Please let us know that you have found an oncologist.

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Just to confuse you further---

The oncologist sent me for a lung biopsy. It was not fun. I was awake and they were sticking needles where needles have never been before. I almost stayed over night due to a possible lung collapse.

The biopsy was "inconclusive". Next step was the thorasic surgeon. He said the biopsy was a waste of time and the nodule had to come out anyway.

Give a hint where you are. Someone here has to be close to you.

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Thanks all for your responses..I feel better already. Confused, but better! lol

I am in Oklahoma, having moved here 3 years ago. I live in a small town that doesn't have many medical choices. The first specialist that I had gone to is in Oklahoma City, my doctor had referred me to him. He is the one that wanted to do a bronchoscopy, but told me that thre was a good chance he could poke my lung or start me bleeding, that I should pack an overnight bag. He also shook like Katherine Hepburn. Since I didn't exactly fall off the turnip truck, I decided that he may not have been the best person to listen to. Besides all that, he said that I would most definitely be needing to go to a surgeon right after that. Its terrible in some ways being in a new state and not knowing where to go (I lived in NY my whole life and knew the "good and bad" medical care places), but a place in Tulsa kept coming up online and in a few conversations I had with coworkers. So I called them and they referred me to the Pulmonary Specialist I went to see up in Tulsa. Its almost a 4 hour drive but this IS my life afterall, I would drive 12 hours to feel comfortable. I felt comfortable with him..the 1st thing he told me is that the bronchoscopy wouldnt work because of where the nodule is in my lung. I felt that he wasn't trying to pad his pockets at my expense. He referred me to a thorasic surgeon who also made me feel comfortable. The surgeon moved here from Phoenix about 6 years ago and is still active on a board at a Phoenix hospital, etc; he's been doing lung and heart surgery for 30 years. The bottom line, that both of them told me, is that I have a nodule in my lung, its growing, it needs to come out. The surgeon also said that because the nodule is deep in my lung, and still rather small, a biopsy would not work. I tend to agree with the idea of getting it out..I have known something was wrong with my first xray the end of January, and it is now almost June. I'm not sure what I would be waiting for at this point by not getting it out! Anyway, I had my choice of hospitals in Tulsa and one of them was THe Cancer Treatment Center, which is who helped me find a decent specialist to begin with. So I chose them. Coincidently, the Pulmonary Specialist is a Medical Director at the center. I think that I am making the right choice...I wish that it was not a choice that I had to make but I'm a realist, and it is...so therefore I plod ahead! :0)

Again, I appreciate all your posts and will continue to appreciate them. I feel better about the aftermath of surgery already. And Gail and Ginny, yes I am going to spoil myself before. I actually have some extra money coming next week so I plan to take a road trip to civilization and go on a shopping spree. And what I don't spend, I will save for my recovery period...and Ebay! I also am planning to take off from work a week prior to surgery...just to clean the house and stock the fridge, etc. I'm going to try to find a cleaning lady for a couple weeks after the surgery..this way I will not be tempted to overdo. There is nothing worse than laying around staring at dirt!!! My son's father will take care of him while I'm in the hospital and I have a 25 year old daughter who will help as best as she can (she's got 3 kids and a husband).

Thanks again, and sorry for the length of this post. I am still terrified about the surgery (Im one of those people that expects the worst..everything from the dr, nurse, anesthesiologist, etc etc making a mistake in surgery to a tornado ripping thru Tulsa at the exact hour I'm in surgery, etc) but you all have made me feel better. I'm glad you are all out there!

Debi

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Debbie-

I had the top lobe of my right lung removed, along with 21 lymph nodes and portions of three ribs. They went in through my back and side and it does hurt, but it's more uncomfortable than anything.

Like you, I am in my 40's. I also have small kids, so I know what you're feeling. As long as you feel comfortable with your surgeon, that is the most important thing. Be sure he has experience in this particular type of surgery.

Having said that, the rest is a piece of cake. You'll get prepped, then they will wheel you into OR. They were very talkative and I actually felt relieved to know that they were going to cut this tumor out of my body and make me well.

The last thing I remember was the anesthetist telling me "you'll feel a little stick"- hahaha- next thing I knew I was in recovery 6 hours later.

I'm told there is a 97% survival rate for this type of operation and I believe mine was more complicated than yours- so your odds should be even better. My surgeon told me that usually the only people who don't make it through this surgery are older folks and those with significant other problems.

Try to relax, try some meditation- chakra alignment, prayer, whatever works for you. Know that you are exactly where you are supposed to be. Let those who know do their job and cleanse you.

Best to you and yours,

Rocco

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Guest DaveG

Debi:

As you see by my signature, I have had 2 surgeries. The unfortunate thing is my rastaging to Stage IV in April, but the good thing is that I am with the right doctor.

That is the key, the doctor. You must feel comfortable with the doctor and he/she must be the same with you. You want honesty, integrity, experience (your thoracic surgeon sounds good to me), compassionate (the utmost), and positive attitude (we're going to help you live your life).

You find all these qualities in a doctor, and you have a good one. There are, of course, other qualities to expect as well, but I consider these the most important.

I don't fault anybody for doing surgery on a benign tumor, as that was my diecison based upon the best information I had at the time. It was the same surgeon as the 1st time, so I naturally truisted him, and really he what was correct, because I did have a lung tumor and the odds were that it was a 2nd malignant as the 1st.

My rstaging was based on a 6 month post surgery follow up, and then a PET Scan with CT Scan. I have no regrets.

This is the most exciting, informative, compassionate, loving, caring, supportive website on the internet for Lung Cancer. We now have close to 400 members and the group is forever graowing. You have done a good job of informing us of your situation. By the way is that the Cancer Center of America you are going to in Tulsa? One of our other members is there right now going through test and follow-ups. The news is sounding very good in that case.

Hang in there, you are among friends here. Keep us posted and we will support you with your decision making process. :D:D:D:D

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Thank you for replying. Dave, it IS Cancer Center Treatment of America and that is so amazing to me..that someone from here is in there right now. I haven't even been to the hospital there yet...I will be going for pre-op on 6/12... but it feels right to me. I hope I have made the right choice with this...I just feel that I can't afford to wait any longer. I don't know if thats right or wrong but I do trust this surgeon and pulmonary specialist..not only were they both caring and compassionate but their office staff was also. At no time at all, in either of their offices, did I feel rushed...in fact both of them took forever with me and kept asking if I had any more questions.

Rocco, thanks for the "blow by blow" of the surgery...it helps to know what to expect. My surgeon had told me pretty much the same thing about the fatality rate..in fact he kind of just gestured...like, dont even think about it. He said that he has lost 5 patients in 30 years during the surgery. Of course with my gloom and doom, I'm thinking "Okay, he's about due". lol My son is the one part of this whole situation that terrifies me when I think about it. If it wasn't for him..well, this would be terrible, but it wouldnt be SO terrible. My daughter is grown and has a family, and I know if something happened to me it would be terrible for her..but she has her family and husband that would help get her through. But how could a 4 year old even begin to understand? I'm glad that you can relate.

Well, thanks all to listen to the rambling again. I feel good being able to talk about this...people at work know since I had to explain my impending absence but I'm not the type of person (believe it or not) to talk about my fears or troubles. When they ask how I am I just tell them I'm good.. I just have to take care of this. This is the first time that I'm actually talking about how I really feel... please excuse the massive quantity of words! Its great to have a forum to say how I really feel and to have people understand. - Debi

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WOW, New York to Oklahaoma!! Thank God for the internet huh?!?! That move must have been a bit of a culture shock. I was born in Texas and now live in Virginia. I wish I could enthusiastically say welcome but we all know we would rather be anywhere else but here. This is a terrific bunch with lots of good advice. Sounds like you have taken charge of your cure which I belive is the most important thing. We all have our good and bad days but getting on here always seems to help me even though I am a very new member and have not posted much, just reading some of the other postings helps. You can and will beat this. Never let that leave your mind. The power of positive thinking can do wonders.

David C

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Debi

When are you coming to Tulsa for surgery? Mike and I are here at the Cancer Treatment Center of America...and we will probably be here for a while yet. This place is absolutely phenomenal. You made a GOOD choice.

Please let me know when you are coming! I would love to meet you! I hope we are still here....Please please post when you are coming...okay??

Hugs,

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Shannon & Mike,

Wow..as they say, there are no coincidences!! I just ventured off the newbie board this morning and was reading your posts on CTCA. I'm telling you, it was like I was starving..I was just absorbing all you had to say!! I was going to post to you but then thought that you were so busy, I didn't want to bother you. I am so glad that you answered my post!

I will be coming up for pre-op on June 12th and then checking in on the 15th for my June 16th surgery. I'm supposed to come up this Tuesday for a breathing test at another facility in Tulsa but may try to change that appt to coincide with the pre-op date. My car isn't really old, but it is at that stage where I try not to push it if I don't have to!

I would love to meet you and am so thankful for your posts. I only knew what I have read about CTCA and how I felt from my limited contact with them. It felt good but I wondered whether it was as good as it seemed. I did try to go straight there, a patient advocate at CTCA fought with my insurance company to have me go there, but my insurance company was a bit difficult. CTCA ended up referring me to their Pulmonary Specialist's private practice so that I could get in the "back door" which is how it eventually played out! My surgeon operates at several hospitals in Tulsa, CTCA being one of them. Guess which one I picked! :0)

Thank you again for responding..this is so great..and feel free to email me! Good luck to both of you, I am thinking of you!

Debi

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Well Debi - I'm hoping we will be home by the 12th....but who knows?

I'm thinking they will be doing the surgical procedure that implants the "epidural pain pump" this coming week. Right now it is a "temporary pump" and he has to carry a fanny pack with him everywhere. Later they will surgically implant it - How soon they will be willing or Mike will be "ready" to undergo procedures or treatments for the actual cancer...is anyone's guess at this point! So we actually could be here on the 12th...that's only 12 days away! It's our anniversary that day (32 years) so I would like to be home...but...it's up to God.

I'll continue posting updates so if you see that we are still here...be sure to "look us up"! LOL

Hugs to you,

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Debi, Boy, Talk about over-reacting! :oops: I didn't see your whole picture and just did a knee-jerk. My humblest apologies. It's just that there are horror stories out there where a doctor has operated and instead of taking anything out, has accidentally spread the cancer.

But. It sounds like you are in great hands!

I was only going by my experiences. My appt w/a pulmonologist was immediately cancelled when they biopsied my tumor (CT guided needle-biopsy that was a piece of cake. Sounds awful cause they went thru my upper back to get to it. I also had a mild pneumothorax: 10%) From then on, my care was orchestrated by an oncologist, who Staged me, and oversaw chemo, radiation, and surgery. She's like my primary cancer care doctor.

I think going to CTCA is absolutely the way to go!

Again, I'm sorry for overreacting. I'm prone to that.

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Judy,

I don't think you overreacted at all! And from your experience, I would be coming from the same position also!!! I appreciate anything anyone has to say on here..you people have all been through all this and to be perfectly honest, I am just plain dumb about it all. I can just glean what I can from all and filter through it all to see what fits my situation best. I appreciate your experience and the fact that you even took your time to post to me! There is absolutely no need to apologize, your wish to help me is so appreciated!!

Debi

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Am praying for you and for success with your treatment / surgery plan. I have a five year old and I can't possibly begin to imagine what goes through your head, but I can be here for you and let you know that well over 300 of us will be praying for you! Stay with us, update us, we really do care here.

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okdebi ~ I am "fresh" from a lobectomy (4-3-03) I too was terrified of the procedure, but I went head on with it. It sure beat the alternative.

Yes, all recoveries are different, and I have heard everything from 4 weeks to several months.

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 :wink: 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 # 2 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!

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.

I am an audio tech that runs PA systems, and I even mixed 2 gigs in smokey bars during this time..not moving the equipment, of course. I didn't like being around the ciggie smoke, but was able to stand it for short periods, a quick trip outside for fresh air rejuvinated me and I could go back in and continue the task at hand. (Frankly..the urge to smoke was a bigger challenge to overcome than the breathing issue :wink:

I spent last weekend in Seattle as a social trip, a 180 mile drive from Portland, and I drove MYSELF and my two dogs back to southern California last week. 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.

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 am using a heating pad, and valerian as a natural muscle relaxer to make it almost a presence, and not really a "pain".

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 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

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Gina D. Thanks for all the detail about your surgery. I have Stage 3A adenocarcinoma and have now completed radiation and chemo with the goal of making my cancer operable. The first CAT scan came back last week looking positive, so I am headed to Houston on Wednesday to find out what the exoerts in the big city say. Last I heard, they were hoping to do a right upper lobectomey unless the tumor does extend beyond the upper lobe. I have been nervous about the surgery--I am anxious to start living my life again--the chemo and radiation together really took it out of me for about 2 months--but I am excited about the possibility of the surgery taking the cancer out of my body.

Becky

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Hi although my surgery was three years ago---so I may have forgot the pain---it was fairly easy for me----but the surgeon said unusual

The only real pain I felt was in the recovery room----then they must have turned the morphine on--

I had the epidural in my back for three days---the only complication I had was a leak in the tube (I call it the aquarium) so I stayed in the hospital for about 9 days until they discovered the problem---

when I went home, I was fine and actually very mobile and went food shopping the day I got home---also dust-mopped my floor---as I had cat hair all over the place---drove after 5 days---and walked up the store every day----I really did not take pain meds except tylenol---

I did used to wake up with pains in my chest---but they went away after 2 minutes (don't know what that was---nor does the Dr.)

I do not think they did anything to my ribs---although I have the large scar from under my arm , down and around and up to the middle of my back----

I was very lucky with my operation---not that much discomfort

plus I live by myself---so I did not have any help--

Had the end of June and was back commuting 3 hrs a day in early September

regards, Eileen

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Thanks to all for replying, I can't really put into words how helpful this board is..but I guess you all know that.

Gina and Eileen..I appreciate you sharing your surgery stories ..it helps to know what to expect and I wish you both tons of luck. I know that the fleet of trucks analogy will help me, believe it or not lol. Like I've said before its so much easier to get through something when you know others have gone before.

I'm trying not to think that the surgery is 2 weeks away, but I seem to be living with an undercurrent of panic and fear. Its just part of me now and doesn't really go away. I almost feel bad posting that, because I know so many of you have gone through so much more at this point; I feel as if I don't have the right to complain. I hope that no one takes offense at my "whining" but I don't know where else to go right now except here. I don't want to be away from my son for a week, I don't want anyone to cut me open, I dont want to have to go through a "recovery" period. I just want my life back to before I had that dang xray. And what is with the smoking deal? Why could I never stop and to this DAY am having trouble? Okay, I think I'm done whining now. I'm just so angry at my body and at myself. I've always considered myself a strong, independant person..but right now I'm not. Emotionally, I feel about 5 years old. I'm a manager at my job, and I work with aobut 250 people and every day someone will ask me when I'm having surgery and I smile and tell them. Meanwhile, inside, I'm basically falling apart here...it is taking so much effort to keep it together. I'm just scared, I guess, but even though I've known something was going to happen for months, I never really dealt with it because my philosophy is that worrying about something does nothing...so there's no sense in worrying. However, this has hit me like a ton of bricks the last couple of days. I'm hoping its a stage, and I will somehow find something steady to hang onto...I really don't like myself as a crybaby, I prefer to be a pillar of strength! :0) Sorry for rambling!!

Debi

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While waiting for the second breast cancer surgery, I was working up to the day before. I lived on valuim for the 3 weeks prior. I cut the pill down to 1/4 of the prescription, but it definitely took the edge off. A principal came up to me and asked me how I was doing. I got tears in my eyes and said "okay". He got upset when he saw me cry, and apologized. I said, "It's okay, my valuim is just wearing off" :lol:

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Debi, You can come here and vent anytime you want. I can so relate to your feelings. This is scary business.

Just know you have a whole bunch of new friends here who are rooting for you.

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