I am wondering, and this may not be a "fun" question, but a more serious one, how do those of you who are lung cancer survivors keep your strong, and positive faces on for your spouse, partner or loved ones when you are not feeling strong and positive? At first I just wore my emotions out there for everyone to see. Now that I appear better, can drive, and have hair, (as short and curly as it may be), everyone thinks I am on the mend and will be all better soon. For my self I have to remember my doctor saying to me, "We will not be able to cure you." I have stage 4 NSCLC adenocarcinoma. I see lots of folks whose stories include lots of NED scans. It is still early for me, but, from what I understand, that will probably never be the case for me. Some days I can live and not let that enter my mind. But, sometimes it does affect how I am feeling, and my positive mood is hard to get out. I am just not feeling it. Those around me, seem to have an even harder time dealing with it. One of my sisters even said, maybe you will get 10 years out of your chemo drug. To me that seems overly optimistic, but I don't say so because I don't want to bring her down. I am wondering how others talk with their loved ones about their own mortality. Their is a value to being positive, but you also can't bury your head in the sand when the cancer is so advanced that they can only provide you with palliative care, or radiation. Nothing can remove it all. I can accept that, but how do I talk about it with others without making them look away, or down, or changing the subject? I am trying not to be negative, but I still have a terror of cancer that has not subsided. I want to be able to deal and live with that. I don't want to miss out on what I do have.

Susan

_________________
To read my story follow this link:

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

Sue, 

I hope lots of people chime in on this, because we all deal with it very differently.  What works for some may not work for others and how we act one day can certainly change the next.

Like you, I have stage 4.  I have mets that are stable at the moment but they are there, in my spine, ribs, femur, lung and brain.  Makes me sound pretty sick huh?  The thing is, except for my funky, short spastic hair, I look perfectly healthy and normal. On top of that I am (usually) a laughing, smiling kind of girl, so people who don't know me really well, or who only see me once in a while assume I am perfectly healthy, even cured.  That can be so hard, because the thing is I can act smiley and happy and active for only so long each day, and then my body crashes and I need to either nap, or rest, alone and quiet and because of my outward appearance, people don't get that.  People question me on why I don't work, why I can't volunteer more, why I don't do this or that.

So, with people who question me, I gently explain to them that my meds make me very fatigued and that I have to put my health first.  I try not to let them bother me, but I also don't pull any punches, yes I have cancer, yes I am tired, no, I don't have to do what I don't want to any more!

With my family (husband, kids, siblings, dad). I am very open.  I do very little crying in front of them.  (The only thing that really makes me cry is the sadness this causes my children.)
We are, as a family, very irreverent about the cancer.  We joke about it, curse it, use it as an excuse to do whatever we want and do our best to not let it be the ruler of our lives. 
We treat it like that nasty relative who you have to live with, but you don't have to pay attention to.  I talk about  my mortality very openly with them all, so they can see that I am not afraid.  I have begun planning my memorial service right down to the music I want played at the gathering afterward., I have gotten my church to start planning a memorial garden so I have a place for my ashes, I have donated my body to medical school.  All of this we discuss, and joke about and treat as "normal" conversation.

My kids no longer live at home, so thankfully they do not have to deal with it or even think about it on a daily basis.  We keep it very light and they really only worry now at scan time. My sisters are sure I am dying any day and hover over me like I am fragile.  I have to tell them, often, that I am not going anywhere soon so please treat me normally.  It is hard for them as I am the"baby" so I let them hover, they need to for themselves.  My husband has gotten very complacent about all of this.  He does need to be reminded that I can't do it all anymore, and that time is precious.  He was never a doting husband and, although in the beginning I was upset by his complacency, I have now come to the conclusion that this is the way he can deal with it. (and you can't teach an old dog new tricks!)

I guess the answer to your question, how do you talk to others, is to just be honest.  tell them how you feel, that some days you are sad or scared or too tired to move.  people that are important will understand.

I have been at this for 5 1/2 years now.  5 1/2 years ago I was given 6 months.  I guess that really made me step back and review the way I was living each day.  I see each day as such a gift, I thank God for each morning and each evening.  I try to enjoy every moment and every sight and every person I encounter.  I try, somedays I am too tired, but I try.  I think that this is in an odd way a gift cancer gave to me.  If I was cured tomorrow, I would hope I would retain this awe and wonder at each day and each experience.  I am trying to instill this awe in my children.  What Randall Broad spoke about at the Summit hit the nail on the head, everyone should live as if they have cancer.

I don't know if you believe in God, but for me, that faith has been such a source of strength. I am not afraid of death, I am only sad it will come sooner than I hoped.  I ask God daily for strength and courage for me and for everyone on this site.

I ask for him to give you strength -
Peace

_________________
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162

Dear Sue,

I was going to come in here and post a Thursday post because my time is limited, but I decided to instead write here. There will be other Thursdays and other days to post topics.

I can relate though. As you know, my last chemo treatment was last Thursday. And already I am getting the questions that say well, now that it's over you must be feeling so much better! I know they don't know any better. I know they want me to feel better. But I don't and it won't happen for a while, and however I am after all of this is going to be a different person that the one I was before. I know that from my cancer five years ago.

I feel like I just want to tell them that "yeah, I am much better". But then their expectations when we do things is that I am back to "normal" and I don't even know what that means! As you said, they see you with your hair, and you are driving and appear to be doing better. And in fact you are! But better is not the same as before. They will never understand that. The only people that can understand that are people that have walked in your shoes.

That is why getting support on line at in person is so important. So I'll just say it again here, I hope other survivors jump in here and give you their advice. The other thing is that Gilda's Club in Grand Rapids might have an Allegan extension. I don't know what that means really. But if you'd call the Grand Rapids office and ask them, they could direct you to the right person to talk to. Their number is 616-453-8300. Gilda's Club is a free cancer support community! Check it out Sue. One line they are http://www.gildasclubgr.org.

The other issue you bring up is much more difficult to deal with. My heart just wants to grab you and hug you because I understand. People don't want to think about dieing. Your or theirs. And they would do just about anything to avoid going there. You, on the other hand, feel that the topic is not out of bounds because of your diagnosis. And yet, you walk that tightrope line of when are you being fatalistic, versus optimistic, and ever versus realistic! In your situation, there are times when you are going to be of the three most of the time. And that is okay.

The reason I am comfortable with this subject is because I've had to deal with it so many times in my life. My Mom and Dad and Sister all died from cancer, and facing end of life issues, palliative care issues, etc. were things we did together. I learned that it was not about me. I needed to just be present with them when they wanted to talk and be okay when they didn't want to talk.

When my cancer came back the second time, they brought in a palliative care doctor for me to talk to and he takes care of me from a pain perspective. This cancer came back as one little tumor, which multiplied to three in a short amount of time. It didn't get staged beyond IIb because it didn't go outside of the lobe. At the same time, it did metastasize itself, and that it's likely this will continue to happen.

If we took what they told us, I would be thinking of living in terms of five years. Like you, I was given an amount of time to expect to live. There are a couple of schools of thought I have on this. #1 - statistics are just that. Large numbers of people make up percentages and variables that they apply to the masses. Us included. But we are individuals. Our bodies are unique to us. We aren't statistics. So is it five years? Is it one? I have no idea. But all of us are born terminally ill. We are all going to die. None of us know when that is going to happen. I could live thinking about cramming all my life in now, or I could just live today and live today as fully as I can. It is my choice because they don't know and I don't know.

Because you are living with cancer, you have been given an amount of time to expect to live but it is simply a wild a** guess. LOL. There are lots of folks here that were staged IV and have been around a long time. Hopefully they will come out and write to you!

So let's forget all of that. You will probably die from cancer at some point in your life statistically, right? But every one is going to die from something too, right? So we can live in fear of that, or we can analyze how we feel about living right now. And analyze how we feel about dying. They both go hand in hand.

I'm not going to preach 'religion' to you, but I am going to say that my faith tells me that being here is just a small part of my journey. I won't get into that much more than that here because this site isn't about that. But faith has sustained me through so much!

Lastly, you said you don't want to miss out on what you do have. Then don't! I know that sounds simple. It isn't at times. But don't. I have to scold myself almost daily to keep it simple. My mind always wants to complicate things. When the truth all we have is today. This day. Let's celebrate it today, hour by hour, or even minute by minute. Worrying about tomorrow won't get us anywhere, because technically tomorrow never happens right? By the time we get there, it's today. And what happened yesterday does not matter either because once it's yesterday it's past, and it means it is done.

Oh my gosh, I could go on and on about this. But mercifully I will end it now. LOL. I hope that maybe just a tiny bit of this message will help in some small way.

Take care.

Judy in MI

_________________
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

I'll be back to read more later Sue! Janet, thank you for sharing here. I wish more people would do that.

_________________
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

Janet and Judy:

Thank you for being so open and honest sharing your experiences with me here. It really touched my heart and I am not always an "open-hearted" person. In some ways I feel like Janet, that having cancer is my second chance to become the person I felel I am capable of being. I have not always been easy to get to know. Not always expressing my thoughts and feelings openly. I have had friends, but very few that I would really let in. My family fell into that same group. I am the oldest of 4 girls. My youngest sister is 10 years younger and I was almost a mother to her. I was even the person who spent the most time potty training her. I was the chief babysitter and my parents left me home alone with my 3 sisters when I was 11 while they took a week long trip to Minnesota. (I grew up and still live in Michigan). I learned to be responsible early and to not complain. Because frankly who was listening? I was the tough and strong one. I graduated from the University of Michigan on a Saturday and left home to drive to Oklahoma on Sunday morning. Such a relief to be away from those responsibilities of my family. I lived away for 5 years and then returned to Michigan and Ann Arbor where the rest of my family lived and still live. I lived there for 10 years and then went through a divorce. Remarried 1.5 years later and moved 100 miles away. Once again on the outside. I did visit, but got tired of doing the drive. So, once again, I drifted apart from my family.

My immediate family has been blessed to not have any loss closer than grandparents. My grandfathers passed away in their early 70,s, but my grandmothers lived to 89 and 93. I have 3 nieces and 5 nephews and three brothers-in-law. And my two daughters. We had never had a fatal illness in our family. I had reflected on that over the years and knew I was blessed and unusual. Many of my friends had experienced loss in their families. So, when I was diagnosed with stage 4 lung cancer, it was a real shock to my family. Two of my sisters work in cancer research related fields, and they were full of advice and questions. They hovered over me like crazy. I stayed at my parents (75 and 78 years old) home during treatment. I saw at least one of my sisters every day. We talked about things long left unspoken. I could not drive and was totally dependent on them. A real reversal of roles. I needed them and that felt strange. My husband hated me being at my parents and could not get me home fast enough. Once I was done with chemo, he packed me up and took me 100 miles away again, to the area where he grew up and all his family lives. Out in the middle of nowhere. In a rural area where resources are few and far between. Does that sound like whining? I don't mean it to sound that way. I guess I am just saying that spending so much time alone is getting lonely. My oldest daughter lives in Columbus, OH and my youngest is close by, but in a terrible living situation. She does have an adorable son, 4 1/2 years old, my grandson. I see them a couple of times a week.

So, now that things are back to normal I don't see my family so much. I am the one who does the driving and it is usually in conjunction with one of my medical appts in Ann Arbor. So, I guess where I started with this is, I think this is my chance to learn to express myself and appreciate my family members. To let them know I miss them. To call them when I am lonely. No one knows what you are feeling if you don't let them know. I am just not very good at being needy. And I guess for me, to have any need at all is needy. With cancer I do have needs that are different than before I knew I had a terminal illness.

Now that I am as healthy as I will probably be for awhile, I feel like this is my chance to work on the things I thought I would take care of later. I have grown over the years. I have gained confidence and appreciation of myself. Coming to the Hope Summit 2012 and sitting in a room where I knew no one, was really a challenge for me. But, I did it! I want to have more moments like that in my life, while I still have the time. I don't have so much wiggle room now, for stepping out of my comfort zone and dealing with things I'd rather avoid.

I appreciate all the thoughts and support found on this site. I appreciate Katie B. and her unrelenting energy and drive to find early detection and cure for lung cancer. It is a tough fight. It would be so easy to sit back and let someone else do it. I would not wish lung cancer on anyone. But, since I do have it myself, (no choice about that) I want to make the best of it. And make it the most comfortable for those I love. I know my oldest daughter is really having a hard time with this because she lives 5 hours away and has just started a new job, with not a lot of time off available yet. I made a weekend trip with my husband to see her and her fiance. It meant a lot to both of us. Like you Janet, I don't cry in front of my kids, but I know they are hurting. I hope will live long enough that my grandson will have memories of me. I loved my maternal grandma so much. She lived right across the farm fields where I grew up. My oldest daughter is named for her. She lived until she was 93. My girls remember her.

Well, I guess I have taken my fair share and then some today. Thanks for being there and thanks for listening!

Susan

_________________
To read my story follow this link:

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

interesting to read from the other side of the cancer Fight....the caregivers side that is!

_________________
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!!

Hi Susan,

You bring to light a very real and ongoing question for all survivors. As part of the LC 'club', we all know all too well exactly what you speak. So don't feel singled out on this one. It's very real and fortunately or unfortunately (depends on how you view it), will most likely linger for much time to come.

There isn't a day that goes by that LC is not present in my life. I'd be a big fat fibber if I stated otherwise. But I do live with 'it' opposed to the alternative and to date I'm NED.

I recall in the early stages of my cancer, I was sitting at the airport waiting for a flight. I sat there very still observing people walking by going about whatever it was they were engaged in doing; eating, hurrying, drinking, talking, grabbing a newspaper, etc. I remember thinking, they don't have a clue I have lung cancer because I don't have any visible 'signs' that I have lung cancer. And as people continued to scurry by where I was perched, I began to wonder how many of the 'them' had a life threatening disease. After all, mine was invisible, why couldn't there's be. I began to imagine all the people in my life I passed not knowing or being aware of such...surely the number is large.

This experience helped to open up a new way of thinking and to grasp my situation and see the world through a slightly different lens. One that was a bit more fog free. In the days that followed, I decided that i didn't want to live with a cancer that had chosen me as its host. Thus I wanted to take over the power of 'it' and be the one to choose the cancer. This was an extremely freeing experience and one that I've held on to since that time.

As for your adoring family and friends and their concerns and ways of addressing or not, my advice would be to be completely honest and speak your truth. Whatever that may be. If you don't feel up to discussing, don't. If you do, go for it. But leave the cancer shroud in the closet as it will serve no real purpose other than to give power to something you don't want to give power to.

One thing I am certain, there are no guarantees in this life. Your final statement is a powerful one...'I don't want to miss out on what I do have.' So don't. Live every day and be grateful. Yesterday is history, tomorrow a promise, today a gift. As such give those around you the gift of today. Tomorrow is only a promise to 'everyone'. Cancer or no cancer and by sharing your gift with those in your sphere of influence you just may open some doors to living an extraordinary life - and not MISSING it!

Randy
Stage III NSCLC - 2008

Randall: thank you for sharing your experiences and insight. I remember when I was first diagnosed I told everyone I came in contact with that I had lung cancer. I could see the pity or empathy in tbheir eyes and how uncomfortable I had made them feel. I did not like that result and told my husband that I was going to remove my "pity pin". The label I was pinning on myself that identified me as a cancer patient. I decided to be myself, instead. Not everyone needs to know my diagnosis. I share with those that need to know or I feel are interested in how I am really doing. I am going to work hard to do some of those special things that make me,me! I will need help. I will try to ask for help when I do need it.

Tonight I noticed a corn field just coming up. The rows were on a slightly undulating hillside. The effect of those curvy rows with the bright green sprouts coming through the wet, brown earth was spectacular. Simple moment, but I was able to notice and appreciate it. Progress!

Susan

_________________
To read my story follow this link:

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

Susan,

I'm so proud of you for sharing...observing beautiful rows of corn is exactly what makes for an extraordinary day. You get it!

Enjoy the rest of today!

Randy

Interesting topic.....I just had a scan last week and unlike my prior scans, I chose to tell very few people. Part of me was wanting to normalize it, set high expectations, and last but not least I cannot help but feel for my friends that are not NED.

I am now starting to look more like I did prior to surgery and chemo a year ago, which is helping me restore my confidence. Though now I cannot go somewhere and people tell me how great I look, which really means I looked really bad! LOL!

Hi Jose! So glad to see you here!

Xoxo

_________________
- 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


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