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Guest rhebeka

Hello...I'm new here and glad to meet you :-)

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Guest rhebeka

Hello:

My name is Becky and in April of last year I had a 9cm malignant tumer removed, along with my entire left lung, out of 15 nodes 5 were involved.

My surgeon said the only node that concerned him was the proximity of one to my pulmonary artery. It was this node that "kicked" me from a IIb to a IIIa.

He did say he had removed all of the cancer, didn't have to cut through any cancer and according to the pathologist, it all had clear margins. My cardio-thoracic surgeon is very good and very humble. He told me prior to surgery that I had an overwheming infection (I was sooooooo sick) and it had to be brought under control to even consider surgery.

I had gone to the emergency room because of feeling so sick and they admitted me. My surgeon, who rarely goes to that hospital, just "happened" to be there while I was, and just happened to turn into the wrong room, mine!

An Internal medicine Dr. was trying to convince me I had dabetes...yeah....right!

The surgeon took over my care. Massive doses of antibiotics, albumin, and a multitude of other meds all IV were prescribed by him.

I was transferred to the hospital where his operating team was and he spent two weeks getting me strong enough to survive the surgery.

The day before surgery I had 2 pints of blood transfused into me. He also did a bone scan because my feet and ankles were so swollen and painful...it turned out to be hypertrophic osteo arthropathy which was being caused by the tumor.

My GP (who is 74 years old) had been treating me for 6 months for arthritis!!! He finally sent me to a Rheumatologist (who looked all of 15!) The first thing she did was order a chest x-ray.

During the "first" surgery he found fluid in my lung and put a chest tube in. He woke me slowly and told me "we are not quitting, we are only pausing"

The fluid had to be sent to a lab equiped for this type test and which is not available here.

He told me that if the fluid came back with any malignant cells in it he would not continue with the pneumonectomy, but he said he had his own thoughts on the matter. I was so medicated that I think I was the happiest cancer patient in the hospital...strictly from the meds.

After a week the pathology report came back and showed no malignancy in the fluid.

Surgery was scheduled for the following day. I believe I have already mentioned the success of the surgery.

The amazing part is the only insurance I had was medicaid. My surgeon doesn't accept medicaid and knowing he would not be paid he operated on me anyway.

When I try to thank him he just points upward and says "I'm only His technician". I just had my bi-yearly check up with my pulmanologist and my chest x-rays were still clear. Next week I go see my surgeon for my bi-yearly check-up with him.

I asked my surgeon, at my six month check-up why I didn't have chemo prior to the surgery to shrink the tumor. He told me I would not have survived chemo in the condition I was in.

I have never had a seizure until after the surgery in April. I then had one the begining of May and another January 5, 2005. That time the ambulance took me to the hospital and they did a cat scan of my head. I was not aware of anything for approximately 8 hours. The nurse came into my room as soon as I woke up and told me where I was and why. She also told me they did the cat scan of my head and I should be very happy "there was nothing there" roflol. She didn't see the humor in it. Anyway I asked to call me a cab and went home.

I know my surgeon is going to want me to see a neurologist....I also have an appointment with a cardiologist the first week in May. Sometimes I would like to just forget all about this and pretend it never happened.......denial sounds like a lot more fun right now!

Anyhow, at my 6 month check-up my surgeon told me something and then said I had already beaten the odds. I feel so depressed at the time of my check-ups and then feel so good when everything turns out to be ok.

My right lung has expanded to take over part of the breathing function of the missing one, and my heart has shifted to the left.....all normal.

The radiology report, taken on April 1, 2005, stated that my right lung was unremarkable (in radiology talk, that's a good thing)

I've been reading the stories on the board for a few months and decided to share mine. Maybe I got a little carried away and wrote a novella....and there's more medical mismanagement involving a teaching hospital in Jackson, MS.......but I'll save that for another time.

P.S. The oncologist I saw after the surgery said chemo at that point wouldn't make any difference one way of the other. I guess if the cancer were to recure it would be an option...at least I hope

Warm thought to everone.........Becky :wink:

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Wow,

Becky,

What a wonderful post!! Thank you!

That story is a gift to Brian and to me right now.

It is, indeed, nice to meet you!

I am sure we will be getting to know you more and more.

Blessings!

Brian and Pat (shortened to Brat)

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Becky.. holy shmoly what an experience. You should write a novel. I doubt that very many of us have had the experience that you have had. What a sweet surgeon. It seems as if someone's Great Hand has been involved in getting you better!

Thanks for joining in!

cindi o'h

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I can only repeat what Cindi said---what an experience for you.

I am glad you have a positive attitude and welcome!

Regards,

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Welcome, Becky! You are already more than a year past your diagnosis, so congratulations. My wife is from Mississippi and we have been to Gulfport many times. I am from New Orleans. Sounds like you are doing very well, and I hope that the news remains good forever. Don

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Guest rhebeka

Thank you all so much for the fantastic welcome. I know I am going to love this group and hope to give as much strength as I recieve from it. It may take me a week or two to know everyone's names, so please forgive me for not using them here. I've read all the medical info at the bottom of your posts and it sounds to me like I'm the lucky one. God was definately on my side on this one. He and I have a very special relationship, I talk, He listens!

I've had some pretty bad times and he has always heard me when I asked him to and usually helped me out, sometimes not.....but he knows what is best for me. Anyway I'll be posting as much as possible and am looking forward to meeting and making some new friends.

Warm {{{{HugZ}}}} to all

Becky[/b]

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Hi Becky, just got to read your post. Wow. I was and may again some day nearly be your neighbor. I lived in Gautier twice and still have a house there. ( also lived in Slidell on your west and in St. Tammany Parish ) Hope you keep us posted. Let me asume you are all over the infection and recovered from the surgery. Donna G

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Guest rhebeka

Mare, thank you for the welcome, I'm so glad to be a part of this group.

Donna, we sure were almost close enough to have coffee together in the morning. Next time see if you can get a little closer to Saucier :wink:

I'm doing great so far. The surgery was a year ago in April and I just had my 1 yr checkup.....so far all good. I am going to check with another onco and see if I should have a few rounds of adjunct chemo, for any stray microscopic cells which might have jumped ship before my surgery!

{{{HugZ}}} Becky 8)

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Nice to "meet" you Becky. Your story is already an inspiration to many, thank you for sharing it with us.

Look forward to getting to know you and wish you only the best.

Keep posting!

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Guest rhebeka

Katie, thank you for welcoming me. I am so sorry for the loss of Jessee. I will never understand why some are taken and some are spared. The only thing I can come up with is: we are each put on earth for a specific mission which is unknown to us. However, God knows what it is and as soon as we have completed it we are allowed to go home.

{{{Warm Fuzzies}}} to you 8)

Nice to "meet" you Becky. Your story is already an inspiration to many, thank you for sharing it with us.

Look forward to getting to know you and wish you only the best.

Keep posting!

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Guest rhebeka

Dear Bunny:

it sounds like you are having a much harder time than I am. I see you are scheduled for surgery on June 24. This is a hateful disease and it certainly has a tendency to test our tenacity. May God be with you during your surgery and after. I'm not a church goer but I do believe in God, a Higher Power, or whatever one chooses to call him and I'll talk to him for you. You may have already read this, but to keep from being considered nutso I usually explain the first time: I talk, He listens (assuming he is not busy at the moment).

All my best wishes......remember what Lance Armstrong said and "live strong"

Major {{{HugZ}}} Becky

what a ride, and what a great outcome. welcome. these people here are amazing.

xoxo

bunny

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Hi Becky,

That is an extremely inspiration story. Talk about devine intervention.... You doctor is an angel.

Your one lucky girl!!!!

:wink:

Maryanne

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Guest rhebeka

Thank you Maryanne. I wasn't lucky, I was blessed. Things just fell in to place for me. Of course I had spent 2 months going to the teaching hospital, University Hosital in Jackson and let them play around with all their newbies. It's about 150 miles from where I live and I had to go back 4 times for biopsys because their newly graduated M.D.'s didn't have the experience to do a proper one. They all came back inconlusive. This is one of the things I told my surgeon the first time I saw him. He just shook his head and said it was ridiculous. One biopsy and then, regardless whether or not it is inconclusive......get it out of there. He didn't even do a biopsy of my tumor. He biopsied my mediastinal lymph nodes, as long as they were clear he would operate. I know you read my "bio" so you know about the fluid he found in my lung while doing the node biopsy. If that had any malignant cells he would not do the surgery. All came back ok, and viola` here I am, over a year later and doing well.

{{{Warm HugZ}}} Becky

Hi Becky,

That is an extremely inspiration story. Talk about devine intervention.... You doctor is an angel.

Your one lucky girl!!!!

:wink:

Maryanne

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Guest rhebeka

Thank you Fay. It can be quite discouraging at times as I imagine you well know. I think the hardest thing for me is that my children, 2 boys, 37 and 38 and my 2 girls 36 and 33 are all in denial. They're attitude is "OK, Mom they fixed you and now you need to get over it" They expect me to have the same stamina, workload, attitude regarding illness as I did before. When I get sick (I never used to get sick at all) They call an ambulance and when one of the kids gets to the hospital they feel bad because they all thought I was either faking it or exagerating it for attention. I know the chance of this coming back are high and the 5 year survival rate is low. I'm going to give it the fight of my life (no pun intended) but If I should eventually have a bad outcome I will feel so guilty for doing that to my kids. It would help if they would at least consider the possibility. They will never be prepared and that makes it so very hard. Until I found this board and another, I had no one to talk to. I'm sorry to cry on your shoulder but you caught me at a bad time. I rarely feel sorry for myself, but this is one of those times. :oops:

Please forgive me and {{{Warm HugZ to you}}}

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Welcome!

Remember, the statistics are based on old studies with older technology.

They had about written me completely off,IIIa, tumor 9 x 13 x 4.5 cm until I found a surgeon who said, "I think I can help".

After chemo and radiation,they pulled a 13 pound tumor out of my chest cavity; I lost one lobe of left lung, one collarbone and 5 ribs.

I am still here. 5 years later.

Try to explain to them this is a new normal. You have less energy and stamina now, although you may find as time passes you get sick less and feel better more.

Your worldview will never be the same.

Last night while getting the mail I saw a rose in bloom the most wonderful shade of salmon, and I remarked how lovely it was.

My ten year old told me to quit acting stupid over a flower and come on, let's go.

What a difference perspective makes.

Hugs and prayers,

MaryAnn

XOXOXOX

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Guest rhebeka

Thanks Maryann. I stayed on my computer all night and am going to go to bed now. I agree about taking time "to smell the flowers", lay on your back in the grass and make cloud figures, lay on your back in the snow (I wish) and make snow angels. So many things have fallen by the wayside since I "grew up"

I'm over my pity party now and am thinking of things I used to do that I really enjoyed and see which ones I can still do, like the above. I'd really like to learn to inline skate. When I was a teenager (born and raised in a suburb of California) I spent my summers at Mission Beach, surfing and riding my skate board. They were a lot smaller then and the surfboards were a lot heavier. I think those things are out of the picture, but inline skating just might work.

Thanks for the help when I needed it.

Becky 8)

Welcome!

Remember, the statistics are based on old studies with older technology.

They had about written me completely off,IIIa, tumor 9 x 13 x 4.5 cm until I found a surgeon who said, "I think I can help".

After chemo and radiation,they pulled a 13 pound tumor out of my chest cavity; I lost one lobe of left lung, one collarbone and 5 ribs.

I am still here. 5 years later.

Try to explain to them this is a new normal. You have less energy and stamina now, although you may find as time passes you get sick less and feel better more.

Your worldview will never be the same.

Last night while getting the mail I saw a rose in bloom the most wonderful shade of salmon, and I remarked how lovely it was.

My ten year old told me to quit acting stupid over a flower and come on, let's go.

What a difference perspective makes.

Hugs and prayers,

MaryAnn

XOXOXOX

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Hi Becky,

I just wanted to welcome you and thank you for sharing your inspirational story. That's what this site is about. It's about sharing and caring. There is a lot of support , love, humor and prayers here to carry all of us through our days. Glad you found us.

Love and Prayers,

Sue

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Welcome, Becky.

Don't worry about appearing "dumb". Last year, I brought some pollywogs in the house and my son and I raised 'em right up to frogs. Had never done that before, and it IS like magic how they can be a 'wog with legs and within hours they are little frogs!

I never carry an umbrella, I like to FEEL the rain on my face and gee, I'll DRY...

Haven't done snow angels, too cold for my poor body and I don't fit in my snow clothes anymore. I did, however, catch snowflakes on my tongue with every opportunity.

Flowers...oh, flowers...yeah, I plant 'em and love 'em.

We have birds with eggs in the garden, sure enjoy watchin' them, too. Guess it's all about the wake-up call and learning, once again, that the things that are important are the things that grab a toddler's attention. Amazing things in the world, amazing things - they look great through old eyes with new perspective, don't they?

Welcome,

Becky

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Hi there Becky.

I'm so very glad that you have found us. I know what that feeling is like to finally speak with people that truely understand what you've gone through. I remember thinking it was actually like talking to long lost family members when I found this site - it was like I'd known them forever. It was 26 years after my surgery before I spoke to anyone with LC -- let alone someone with one lung! It's good there are support groups now. And how about your surgeon?? It would be nice if there were more like him. As far as your children go Becky, hopefully they'll come around. It's difficult for them to comprehend partly because on the outside, you're still the same person. Go get some balloons next time they all come over and ask them all to take as deep a breath as they can , and then exhale one long, giant breath into the balloon until their lungs are empty. You do the same, then compare balloons. That should help them understand. I like the idea of in line skating - it will be a great way to exercise your lung -- providing you have all the safety gear. Me, I bike a lot. I think it's important to stay active and eat healthy at this stage in the game. To grow old is one thing... to grow old with only one lung will certainly present challenges... but to grow old with only one lung AND be out of shape and unhealthy, would be it's own recipe for disaster. Take care Becky, and PM me if you ever want to talk (there's some pretty quirky things happen when your internal stuff starts shifting around...)

David P.

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