This has been on my mind since I read a blog post Teri Simon (The Flying Elephant) wrote. When you are diagnosed with stage IV lung cancer you are not told there is a cure. You are not told you will ever get NED results. You are not told you will ever be done with treatment. You are not told you are in remission. You ARE told they will do whatever they can to prolong your life and give you as much quality of life as possible. At least that is my experience.

In Teri's blog she said she had been told much what I had, but she wanted her life back and she was going to hope for a miracle. That she would be cured.(at least that is how I read her post). I have been wrestling with that ever since. I have reevaluated and reformed my hopes for life.The parameters are not are far-reaching or extended as far into the future. I hope I will be able to attend my 27 year old daughter's wedding September 1st this year. I hope I will enjoy another Christmas. I hope the spots on my liver are stable like the larger tumor and only looked "new" because the comparison CT was not current. I hope I can attend Hope Summit 2013 and meet some of the people I have met here and can spend some time with other lung cancer survivors. That is about as far out as my HOPE reaches today.

I feel like hoping that I will live to be 94, like my grandmother is unrealistic. Hoping that my husband and I will be able to retire and build a retirement cottage on our wooded property near Lake Michigan is a pipe dream. Staging in cancer is done for a reason. If all cancer was equal, then all treatment options would be the same and all survival rates would be the same. Cancer cells have travelled through my blood stream and has been carried to all areas of my body and could become active anywhere. My current treatment is working well, but without it, my cancer is not cured, or even in remission. I feel like if I hope it will all just disappear I am like an ostrich with my head in the sand. That I will miss out on what is now because I am EXPECTING more time than I have. It seems as though the smaller sphere of my life is a happier one. I do things I might have put off because I might not have another chance to do it. I appreciate more what I have NOW.

What I am conflicted about is the question of, "Does this make me a negative person?". Does this mean I don't have faith or hope? Because I feel like I do. I just think it means that I have accepted the limitations of my life and hope for smaller things. Things that are closer in time. Things that are most meaningful to me. I know each person deals with cancer in their own way. Makes their way through the best way they can. There is no right or wrong way to believe. I hope that I can stay as accepting as I am right now. I feel well, I am not going through infusions, (I take an oral genetically targeted therapy). I can walk on my own, I have let my handicapped sticker expire and I can do the most of the household chores I need to do.

I know at some point it will get harder again. It is easy to forget in here that many of the LCSC members are going through hard times and treatments again that rob their bodies of strength. Because the posts they make still speak loudly of their faith and hope for their lives. It becomes real again when I hear someone say they spent the day in an infusion chair. I have been there. And I will be there again, someday. I hope that I can be as strong then as I feel now.

I also want to point out that I am not in any way diminishing the struggles and tests of hope that other stage lung cancer patients go through. I have not had to deal with any surgeries, because there is just cancer is so many places they could not get it all out. My husband asked once why they could not just cut it out and my doctor answered it would be like cutting me up with a cookie cutter and still they could not get it all. I Have not yet had any radiation. I know other stage cancers also deal with all sorts of chemotherapies. But, some of those other stages will hear the word NED, or remission. Those are things they can still hope for. That is not a promise or guarantee that it will never return. Just that it is not here for now. Cancer of any stage is just plain hard.

Maybe I have answered my own question. Just trying to get it out of my head, I guess. It seems to me that hanging onto hope to be CURED of stage IV lung cancer is like trying to hang onto a bubble. You might get it to stick on your hand for a moment, but it is going to pop eventually. Thoughts on this one?

Susan

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To read my story follow this link:

http://lungevity.org/l_community/viewtopic.php?f=47&t=47071

It's hard when we think about realities vs hope. My dad was given 4 months...how could we still have hope? Could we hope for a cure, a magic treatment or even more time...People with extensive stage small cell lung cancer HAVE survived (I've met two of them) but for him that sort of seemed far reaching- like a bubble that would eventually pop much sooner rather than later...so we hoped for a single moment at a time...and we got 11 months.

Its facinating to hear everyones perspective- the eternally hopeful (me and maybe even Teri Simon) and the realistically practical and the pragmatic...have even run across a few complete negative thinking people too....

What it boils down to for all of us is that there is NO cure for death--for any of us. It will happen to some sooner than others...so keep doing what you are doing miss Susan and appreciate what you have NOW...a day at a time, and maybe one day you'll say to your husband, it's time to think about that retirement cottage, dear!

If only all of us, healthy or not, would live life to the fullest EVERYDAY.

I can't wait to read what everyone else had to say,

Much hugs, and keep posting. You are helping many.

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Carpe Diem.... seize the day. You might get one tomorrow maybe not. Same thing in my life. I might get another day tomorrow might not get one! we never know until tomorrow becomes today and we hope and pray at the end of this day for another day tomorrow..

Remember every day there is a doctor somewhere fighting to find a cure in some way and we can hope he succeeds or a Doctor succeeds somewhere along the way.

When Deb was diagnosed, She told her Onc just treat me and take care of me. I will keep fighting as long as I can. I don't care what stage I am. I don't care ow long I have. I have more and better things to do with my life than worry about my cancer!! She took Art Classes at stage 3 and 4 . She painted our house after starting treatment. we went on vacations when we could in state and out of state. She did what she wanted to do Cancer Be Dammed.. I am ever so proud of her for that. she had her car and I had my truck and we did what we wanted and what we could when we could. IF she felt well l enough to tote her school supplies up the hill she parked away from handicapped spots and walked. when She did not feel good she whipped out her sticker and used it. She really did not care about her cancer or what it was doing to her..

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Randy:

Your wife was a remarkable woman. I am doing my best to do all I can do and be the best person I can. I have always been a fact gatherer. Looking at all the details. Looking for the correct answers. Analyzing things to the extreme. I suppose you have noticed that about me. Can be a fault, but it can also be a gift. Depending on the situation. I do try to go along whenever I can and even went to events (Wicked, with my sisters at holiday time) when I felt horrible and was just hoping I would make it through the fabulous performance without vomiting, family get togethers and walked up and down stairs so I could spend the night with family when my bone mets were so painful that I was on 24 hour morphine. I keep many of my thoughts to myself. I don't express my uncertainty to my family. I don't want them to worry. I imagine a lot of others do the same and that is why I share my thoughts here. My oncologist does not believe in giving time frames. But, as a fact gatherer of course I have looked at the statistics. And of course I could get run over by a truck tomorrow. I am trying to be okay with cancer. I try to ignore it, but I do have physical symptoms that sometimes can't be ignored. I have to take care of myself. I don't focus all my energy on cancer, but I have had issues in my life and my personality that I would like to resolve and overcome. And it is really helpful to hear how other cancer survivors are living their lives.

Susan

((((((((((((((((((((((((((((Susan))))))))))))))))))))))))))))))))))))))

Your doing great my dear!!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Sue,

I enjoy reading your perspectives and I truly admire your approach.

Cancer or not, no one is guaranteed tomorrow. I know that's said all the time, but you are right, we do need to balance living for the day with hope for the future. How sad if we miss today because we were so worried about what's gonna happen next.

It seems like you are working on a good balance. And keep sharing your thoughts.

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

StageIII and nine years clean. Who knows, hang tuff and fight the fight. Everyone is so different. Your Dr.'s chemo,radiation,surgery, kind of cancer and luck. Try to stay positive and to have a sense of humor about it all. Live each each day as if it's your last, and when you get out nine years as I have not to much in life scares you.

_________________
[size=84]This pic is myself with grandaughter Riley, Christmas 2004. I was dx w/very early stage IIIA nsclc, large cell(sub division is clear cell) w/lymph node involvement on 7-31-03, two weeks before my 50th birthday. Had lobectomy of top lobe of right lung on 9-15-03. Was done all chemo (carboplatin and taxol ) 8 rounds and 22 days (together) of radiation by 1-23-04. Stopped smoking after 35 years. Have two married daughters and 4 gorgeous grandchildren under 12. CT scan 8-13-04 cancer free. X-ray 12-10-04 clean. CT still NED 1-14-05. Xray NED again 5-6-05. Another cat scan 9-23-05 NED again. Xray for bad chest cold on 1-17-06 clear again. Chest xray on 3-16-06 still clean. CT from 9-7-06 clean. Another clean x-ray 3-5-07.[/size] CT of the chest 9/6/07 still NED! Another clean CT on 9/10/08! Clean chest xray 9/16/09. Discharged from cancer center, yeppie. As of 8/6/10 still
clean. Chest xray 9/14/11 still clean.

Susan,

I really appreciate you posting this "just for me" at this time. I went from a stage 1B to a stage IV ON 6/12/12 because of a large brain tumor. i kinda, sorta knew what that meant, but didn't have time to dwell on it - had to get that tumor out before it killed me, and I could feel myself slipping every single day. It is scary to be in recovery for a lobectomy and then, in a matter of days, lose the ability to dress oneself amongst other frightening things. Now, post craniotomy, i am still not moving well, in pain, losing vision, can't be left home alone, etc. And I am really doing remarkably well under the circumstances. I keep hearing that I am young (55) and healthy (no diabetes, kidney or heart disease) BUT I heard that first radiation onc. say that I am not curable. That we will focus on my quality of life from here on out, but no cure . . . really don't think my sweet husband heard that at all, and I kept my mouth shut. Now I have seen a second rad. onc, and he is saying the same thing, but there are some new developments that don't seem very good. I will have a PET scan on Mon. to see where else this cancer may have gone, then begin WBR on Tues, the same day that my stitches will come out of my head. When I heard the urgency to get the new scan and start the treatments asap I lost it for a bit, but my 34 yr old daughter was with me and I couldn't do that to her . . . my husband practically ran away at the news, it scares him so bad. I have not asked for a "timeline", yet. I have been given a mission from God to keep my eyes on Him and be an example for my family, living each day in faith and sharing my life and love with everyone i possibly can. I have been sick for a few years, but never knew what was wrong. Now we have some answers and even though they aren't what we expected, they are answers, and I have been wanting some of those. Miracles do happen everyday but i have come to see that there are miracles in the tiniest things, and I need to share and appreciate them. I believe that this is a learning experience for each of us and we will come out of it better people. If I have to have cancer I will do it in the best way possible. I will spend quality time with my family and friends, get my ducks in a row and live as healthy a life as I can under the circumstances. I have people all over the country praying for me, and they are praying for a cure, a healing, which I appreciate so very much, but all I want to do is truly LIVE each day and God is helping me do that. Today I loaded the dishwasher for the first time in a month - what a thrill! Hahaha! No joke, it was. The fact that I can even type is a miracle. This is a miracle for me just to be able to share with you. So I HOPE this peace from above keeps my Spirit lifted the way it has been since I heard Stage IV, and I HOPE that every cancer patient can rest assured that no matter what comes, they are being loved, comforted, prayed for and God is with them through it all. I also HOPE I can spread this feeling of peace, and maintain it in my heart as well. This is not easy but I am armed and doing all I can for each one of us.

Love you all, Dani

_________________
2/29/12        Sinus CT Scan
3/07/12        Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12        Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12        Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12        Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12        PET Scan
3/20/12        PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12        Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12        Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports. 
4/03/12        Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12        PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12        Broke out in Shingles. Postpone surgery for a week.
4/30/12        Lobectomy - remove ULL. Methodist Hospital.
5/03/12        Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12        Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12        Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though. 
5/23/12        Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12        Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12        Brain MRI at So. Loop Imaging
6/12/12        Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12        Met Medical oncologist. Says need brain surgery.
6/15/12        Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12        2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12        Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12        Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12        Met w/ radiation onc. dr. Need WBR w/Boosts. 
6/29/12        CT Scan at St. Joe because of bad headaches
7/02/12        Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12        Radiation simulation set-up.
7/09/12        PET Scan - No evidence of new tumors in rest of body.
7/10/12        Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT

Hi Dani,
Wow, sorry to hear all you have to deal with. I will keep you in my prayers. My mom passed of LC and my dad of Pancreatic , so Iam no stranger to ca. Take care and fight. I will keep you in my prayers.
Mare

_________________
[size=84]This pic is myself with grandaughter Riley, Christmas 2004. I was dx w/very early stage IIIA nsclc, large cell(sub division is clear cell) w/lymph node involvement on 7-31-03, two weeks before my 50th birthday. Had lobectomy of top lobe of right lung on 9-15-03. Was done all chemo (carboplatin and taxol ) 8 rounds and 22 days (together) of radiation by 1-23-04. Stopped smoking after 35 years. Have two married daughters and 4 gorgeous grandchildren under 12. CT scan 8-13-04 cancer free. X-ray 12-10-04 clean. CT still NED 1-14-05. Xray NED again 5-6-05. Another cat scan 9-23-05 NED again. Xray for bad chest cold on 1-17-06 clear again. Chest xray on 3-16-06 still clean. CT from 9-7-06 clean. Another clean x-ray 3-5-07.[/size] CT of the chest 9/6/07 still NED! Another clean CT on 9/10/08! Clean chest xray 9/16/09. Discharged from cancer center, yeppie. As of 8/6/10 still
clean. Chest xray 9/14/11 still clean.