Hi early stagers,

I'm wondering, now that you are an early stage lung cancer survivor, what do you do differently?

If you are like me, I always say that my life changed forever when I was diagnosed with lung cancer, but what really is different?

I think for me, I have an intense awareness of the passing of time. I feel like life, which I now realize is so precious, is just blowing by. And, while I work on trying to make the most of my days, life is still just buzzing past at what seems to be breakneck speed all the time. Makes me a little sad, but I don't know what I can do about it????

I also try to eat right and get exercise more now than before. Now, I'm not always successful at both of those, but I'm trying, and am in pretty good shape right now. I could stand to lose about 10-15 pounds, which I keep saying I will get after, but you know how that goes. Hopefully, this winter. (lol!)

I am a lot less carefree now. I found out how it feels to have my life threatened and I didn't like it. I don't like that part about me.

I want to live to be old, but I don't look forward to being old. (huh?)

I love birthdays! My friends don't want to be reminded when they have another birthday, and I'm shouting from the rooftops when it's my birthday!

Those are some things that come to my mind, what about you?

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Hi Cindy!

I remember I used to whine about my birthdays and getting older ... boy, has that changed. I turned 50 in December and people were laughing about how excited and happy I was. I definitely share the appreciation for every extra year I am here.

I was very healthy when I was diagnosed with cancer (in fact I had just lost 40 lbs and was exercising faithfully); however, up until this past year I was so concerned about cancer that I forgot to worry about the other stuff. A diagnosis of pre-diabetes this summer woke me up in a hurry and I proceeded to lose the 30 lbs I had gained back and am now exercising on a regular basis. I realize that with the gift of aging comes the responsibility to take care of myself in all areas of my life (somewhere after I hit 40 I found I couldn't eat/live the same way I did in my 20's...go figure!)

I find I don't let negativity or stress invade my life when it is within my control - when I find something or someone is not a positive in my life (such as my work situation which I left last summer) I let it go. I used to view that as giving up ... now I look at it as self-preservation! Since my cancer diagnosis the saying "Life is too short" has taken on more meaning.

I honestly lived in a bubble before diagnosis ... I worked in an Emergency department/Neonatal unit for many years at a large and busy hospital and saw pain and death; however, I somehow had myself convinced that I was invincible - bad things happen to other people. Like you, that carefree Linda is buried somewhere and I'm not sure how to revive her. I live with fear now - not just fear about me, but about those I love. Honestly, the bubble was nice - perhaps not realistic, but I miss it.

As much as I would love to say I am a better person I don't know if that would ring true. I still lose my temper, I still swear too much, and anyone who knows me would say I am still a major control freak. What those who know me would say is that I let them know how much I love them and take (or make) opportunities to share my feelings. I took it for granted before that they all "knew" ... now I don't want to leave it unsaid. I am not better - just different...some are positive changes and some not so positive.

For a long time I thought that if I was allowed to live that I had to do something to be worthy of that chance. That is a hard thing to live with and not feel extreme guilt; I came to the realization that perhaps I was spared for now so that I could help someone else in their cancer journey. Having had cancer I have a depth of understanding that I can offer to my friends and family that are walking this path now and for that, and that alone, I am grateful.

Cindy - thanks for asking this question and thanks for listening to me ramble. It was good for me to reflect and perhaps give me the opportunity to see what further I can do in my life differently ... I am always up for improvement!

Luv,

Linda

P.S. It is so great to see your smiling face! Perhaps even Debi will stop by with an update ... I miss her too!

_________________
46 years old at diagnosis
Lucky mom of a 16 year old boy and 15 year old girl

Mar-May 2006-3 CXR's performed; eagle eyed radiologist caught something not quite right-F/U done
May 24, 2006-CT scan-suspicious for lung cancer
June 1, 2006-Went to Vancouver for private PET scan-SUV 1.4; ? bronchioalveolar carcinoma or carcinoid
June 5, 2006-Met with surgeon-thinks 1A-surgery soon
June 20, 2006-Left lower lobectomy via VATS
July 5, 2006-Pathology back-stage 1A, pure non-mucinous bronchioalveolar carcinoma, 1.8 cm, well differentiated
Oct 13, 2006-CXR, good
Jan 16, 2007-CXR, good
April 17, 2007-CXR, good
May 4, 2007-CT scan-good
Sept 18, 2007-CXR, good
Dec 18, 2007-CXR, good
March 18, 2008-CXR, good
May 30, 2008-CT scan-good
Oct 21, 2008-CXR, good-graduated to 6 month visits!
June 5th, 2009-CT scan-good!!!
December 3rd, 2009-CXR-good
May 27, 2010-CT scan-good-moved to once/year CT scan & visit!

4 1/2 years from surgery-so happy to be here!!!

What a fantastic post!! I can't wait to read more from others about this!!

Hugs,
K

Hi Linda,

It's good to see you too! I have been working part-time, and my work keeps me at the computer all day, so lately I've been a little absent from the boards, but I'm going to be a lot more active going forward!

I agree with everything you've said--I'm different too, not better, just different. I also still lose my temper, say too many bad words, need control, and stress about the silliest things.

Trying to think of interesting topics for the Early Stage forum--what would you like to talk about and hear others talk about?

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

I was already going through a lot of changes, starting to think about retirement and reducing my world down to the things I really like and want to do. I guess my diagnosis did tend to speed things along, in that vein.

I was already very fit and trying to live healthier and lessen the unhealthy and stressful stuff, and I keep trying to improve there, too.

I don't think there's any way you can hear that diagnosis without having some perspective adjustments happen. It can sure change what seems important, and improve appreciation of what's near and dear to us.

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com

Cindy - I haven't been around here as much lately either ... I still check in, just not posting as often. I find I don't have much to offer in the way of knowledge as my experience is very limited so I just keep quiet.

It seems that the group of early stagers is very small - I guess that is a good thing because it means life is being lived. I find as I get further from diagnosis my input waxes and wanes as well. Of course, fear is always there at the back of my mind, just not as prevalent as it was the first couple of years.

It is also a bad thing that we are so small as a group because that means that too many are being diagnosed too late. It is discouraging and heart wrenching.

As to discussions the type of question that you asked here was excellent. I think we suffer from more emotional issues (although some do have physical trials as well) and just responding brought forth things I had not really brought to the surface and said out loud before. So ... thanks for that Cindy!

Bud - I can't think of anyone I know that is healthier than you! Honestly ... I ride my stationary bike 30 minutes a day and think I am the Queen of exercise - really, who am I kidding? Considering I used to count vacuuming as an exercise I suppose for me this is a vast improvement - ha ha! You are right though - I have more appreciation for life in general - the beauty of a sunrise, the laughter of my children, etc. etc.

Hugs,

Linda

You have all answered so well that there isnt much I can add. Cindy,what you said about time just blowing by is so true. I remember when I would leave the oncologist with a good report I would think now if I could only stop time and keep it this way. When I was first dxed I always thought if I could only have a few more years I would be happy. Now I dont know that even if I was 85 that I would be ready. Im sure I would want to hit 86.

_________________
Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

This question really had me thinking. I used to be little Ms. Sunshine, not anymore. I'm a lot more quite then I used to be. It is also very hard for me to relate to others problems, I get very impatient with some of my friends. They get all upset about something and I'm thinking "big deal at least it's not cancer". I'm much more of a loner now. I used to love to listen to live music, I considered myself a "groupy" on my favorite bands, hardly ever missed a concert. I don't do that anymore, the music is too painful to my ears, even with ear plugs. Am I grateful to be alive? Hell yes! I have started trying to do more activity and just recently joined Weight Watchers, I gained about 50 pounds on chemo. My hope is that if I physically feel better, I will mentally feel better. Man this sounds so negative! But that is where I'm at right now.

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Dana - I just wanted to know I am sending you a big cyber hug ... it is a process isn't it. Physically we may heal, emotionally the scars remain. You don't sound negative - you are just telling us like it is. I would put on a concert for you, but trust me girl, that would definitely still be painful to the ears

BTW, I recently lost some weight I put on (not from chemo tho-I was overeating in case I ever needed chemo and then didn't stop even after I realized I didn't) and I truly feel so much better. Good luck on WW. You ever need someone to talk you out of eating that donut (or whatever calls your name) let me know ok.

Take care,

Linda

(((Linda)))
Thank you.

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Hi Dana,
I just wanted to let you know that I loved Weight Watchers-I was on it right before my breast cancer diagnosis, and it's true-if you work the program, the program works.

My friend joined recently and really likes the new program they have now-she's doing well.

Good luck to you!

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Hi Cindy,

I feel extremely blessed that my cancer tumor was found early, in stage 2. I watched 5 of my immediate family die in stage 4 SCLC. How amazing that mine was NSCLC and stage 2! While the surgery recovery was grueling with a lot of complicaitons, the chemo regime was horrid, but I got through it all.

I finished chemo just before November in 2007. I was in recovery from that for the next couple of months. As I finally started to feel like I could get back to life (a different life from the past), it was Spring time. As I would walk outside, smell the flowers, see the buds blooming, and the sunshine and intense blue skies, I remember tears coming to my ears, because it seemed like the colors, smells, and beauty were magnified 1000%, and I was overwhelmed with it all. As the season moved into Summer, it was the same. Fall, Winter, all seen through new eyes. Eyes that didn't appreciate the small things BEFORE C.

I did go through a time of depression as I adjusted to my new life. I'm a take charge kind of woman, and my "take charge" was not as take chargey as it used to be . I read books on the New Normal, which frankly ticked me off. But at the same time, I was overwhelmed with such appreciation for things I did not appreciate before, that it didn't take long to adjust to my new life, with new limitations, but also with so many possibilities that I never dreamed of before.

So, people ask me what was the worst thing that ever happened to me in my life. The answer? Lung Cancer. Then they ask what the best things that ever happened to me in my life. The answer? Lung Cancer.

I'm a softer, gentler, more loving person now. Like Linda, I make sure those I love know it. I was not an affectionate person. Now you better like hugs, and most likely kisses, because I love to give them and get them.

Thanks for this great thought-provoking topic!

((((((((((((((((HUGS))))))))))))))))))
MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25