RuthieThomas

Lily,
I'm sorry that you and your family are dealing with this disease.  I mentioned this to another forum member: lung cancer is tough on the patient but I believe it is equally as tough on the caregivers, family and friends.  For months, my husband wouldn't leave me alone at all - not even for 10 minutes - until I convinced him it was okay.  It has taken a toll on him.  I also see the toll that 19 years of my dad's illnesses (stroke, melanoma, lymphoma) have taken on my mom.  She was really wrung out this year trying to be with me for chemo every three weeks and then driving the 200+ miles home to get my dad to chemo.  
As his daughter, and as a caregiver, you want to be there and fight 110% but you have to take the time to take care of yourself.  Your stress and anxiety will be apparent to him and, if he's like I am, he'll worry more about you than himself.  Take an hour each day and do something that brings you some peace, whether it's meditation, prayer, or listening to your favorite music as loud as you can.  If you can recharge your batteries, you'll be in a much better place for you and your family.
Please know that I'll be thinking about you and your dad.   

Hi Lily, 
I'm so sorry you are going through this. Don't apologize for  your feelings - that is what this forum is for (IMHO). My stepdad, who lives with us, was diagnosed last December as well with Stage IV nsclc. He did five days of radiation after diagnosis, then chose to wait for progression before chemo since he felt well. He spent the summer golfing and still working full time. He is about to do his second day of IV chemo (he is doing four rounds, 21 days apart, with the last round on December 22). They call it "comfort chemo" I guess. Progression is really starting now. Honestly I'm overwhelmed and he hasn't even "really" started to experience what you and your dad are experiencing now. I know my work will start to suffer, parenting, everything, when all I really want to do is spend time with him. We talk a lot, at his pace, and I let him be angry or sad when he needs to be. We do normal activities to the greatest extent, and follow his cues. They say self care is important but like you, I don't know what that means or how to do it. Will your dad journal? I bought a "grandfathers'" journal that I gave to him a few weeks ago, I'm hoping he'll fill it out with some memories for my son. Is there a counselor or social worker you could talk to? Would journal-ling help you? I try to do as much as I can alone but we use volunteer drivers now and then and I have a cleaning lady coming in every two weeks just to take something off my plate. 
We are in Canada, so we have the option of compassionate leave from work for up to six months, at a 50% reduction in wages. I may do this in the new year. It's so hard. I guess just let him know you are there, and take solace in the fact that you ARE ENOUGH AND YOU ARE DOING THE BEST YOU CAN. 
I'm right where you are, although maybe a few weeks/months behind. Feel free to reach out if you think it would help. <3 

Hi Monica,
As usual, I don't have any actual useful information, but just wanted to wish you the best & join you in hurrying Friday along. Prayers & peaceful thoughts going  your way.
Ruthie

Hallelujah! Biopsy results back today and still NED!! No more scans until after the Holidays. They will be especially joyous this year because I can EAT! Santa may have to bring me a larger wardrobe.
Thanks be to God & thanks to all the good people in this community!
 

Hallelujah! Biopsy results back today and still NED!! No more scans until after the Holidays. They will be especially joyous this year because I can EAT! Santa may have to bring me a larger wardrobe.
Thanks be to God & thanks to all the good people in this community!
 

Monica and Laura,
I absolutely understand where you are.  After I finished chemo, when we were waiting to check out my thyroid issue, I felt good.  Top of the world! I had a clean chest CT in early July.  But then I received news in early August that shook me to my core.  Mentally, I had started to give up.  I was worried about my husband and parents and who wanted what of my belongings.  I cried constantly, and realized I needed help.  I met a woman with Stage 4 melanoma with mets to her spine and she said "I ain't going out like that!"  I loved that attitude so I talked to my oncologist about the mental battle and he put me on anti-depressants.  It's not for everyone but I have had a much healthier approach to my daily life.  I got choked up a few weeks back while on vacation, but other than that, no crying jags.  No pity parties.  I'm making plans for the future.  I'm not going down without a fight.  I pray you both find some peace and inner butt-kicking strength.  

Hello Ruthie
People like you are the reason I searched out a site like this. It's very difficult for me to respond seeing most of the time I am doing this on my phone. My pity party's consist of laying in bed for days at a time, which in turn upset me more because I am wasting precious time. I can't seem to get a grip around this yet. Thank you for your response it does help to know I'm not the only one and that I too will get thru this. Wishing you great things in life. Take care 

Ruthie,
Double-dog-dang!  I wouldn't want to wait 3 months either!  I can't tell you how many times we suffered from it's gone-to-it's back-to-it's gone again.  Once I remember we got a different diagnosis for three running months.  But, unfortunately, scanziety and uncertainty are part of our new normal.
So, first I pray it is an aberration, a false-positive, a inconsistent interpretation.  I'm sticking with that until I hear differently.
Do something fun this weekend!
Stay the course.
Tom

Wow I have been on this site for 5 days straight. I didn't think it was possible to get so much insight and read so many encouraging stories. Tom Galli you are all over the map! I must say a job well done . Well only one more week of clinical trial testing and I am finally starting down the road of treatment! Not to bad after waiting 3 months. But that story is for another day lol take care everyone

Hi Monica,
i sstruggle with the same emotional roller coaster and haven't found the answer to it yet. I was waiting and hoping that I would have a mutation that would be targetable, but no such luck. I'm waiting for my screening to begin for the same clinical trial as you, so you are a little ahead of me in the time frame. Please let me know how the process has gone so far for you. I would love to stay in touch as we head down this road together. You are not alone.  I think about you and others who have posted on this site daily and I appreciate all of you. Tom, I also  want to thank you for what you do for so many of the individuals who post to this site. Please, let's all stay in touch and all the best for everyone. 
Martin

We all understand...We all have been there and many of us still are..You will get through this..You can do this!!  

Thanks, Tom...Tall cotton all around.  Everything stable, still NED! Next scan in 3 months. Life goes on!
Ruthie

Hi Monica! 
I can't add much to Tom & Martin's words of wisdom, but just wanted to let you know you are far from alone in feeling the way you do and that everyone who reads your words is pulling for you.  I hope you're feeling better after getting started with treatment...I know that feeling like I was doing something to "fight" helped my mindset.
I was diagnosed a little over a year ago w/stage IIIb inoperable adenocarcinoma & have had 1 recurrence since then. I was treated initially w/chemoradiation (no mutations for me, unfortunately), then surgery on my axillary lymph nodes & more radiation. I finished treatment in May or June and have noticed feeling sort of lost; like I'm not in warrior mode any longer and don't know how to feel!
I try awfully hard to follow Tom's advice, but I think we all have our times when we are just overwhelmed with sadness & helplessness. I allow myself to have a "pity party" every once in a while and get it over with. I hope you aren't blaming yourself for having this awful disease. As a former smoker, I understand the feeling, but non-smokers get this nasty stuff, too, and most smokers get away without it! My Mom & Dad both smoked: he died at age 46 of lung cancer & she died at 92 of heart failure still smoking like a chimney!
You've come to the right place...there is a lot of caring and wisdom to be found. I wish you the best; please keep up updated.
Ruthie

Hi Monica! 
I can't add much to Tom & Martin's words of wisdom, but just wanted to let you know you are far from alone in feeling the way you do and that everyone who reads your words is pulling for you.  I hope you're feeling better after getting started with treatment...I know that feeling like I was doing something to "fight" helped my mindset.
I was diagnosed a little over a year ago w/stage IIIb inoperable adenocarcinoma & have had 1 recurrence since then. I was treated initially w/chemoradiation (no mutations for me, unfortunately), then surgery on my axillary lymph nodes & more radiation. I finished treatment in May or June and have noticed feeling sort of lost; like I'm not in warrior mode any longer and don't know how to feel!
I try awfully hard to follow Tom's advice, but I think we all have our times when we are just overwhelmed with sadness & helplessness. I allow myself to have a "pity party" every once in a while and get it over with. I hope you aren't blaming yourself for having this awful disease. As a former smoker, I understand the feeling, but non-smokers get this nasty stuff, too, and most smokers get away without it! My Mom & Dad both smoked: he died at age 46 of lung cancer & she died at 92 of heart failure still smoking like a chimney!
You've come to the right place...there is a lot of caring and wisdom to be found. I wish you the best; please keep up updated.
Ruthie

Cynde,
Every cancer patient should be so blessed to have someone like you in their life. I am so sorry that the two of you are having to endure the seemingly unendurable. I have said before, and I still believe it, that being the caregiver is harder than being the patient. You have all the stress, worry and emotional pain, not to mention the physical toll to your body, and frequently not enough emotional support & sympathy from others since you are technically not the patient.
It seems we  humans often lash out at those closest to us...maybe because we subconciously feel we can get away with it with the person we trust the most to not leave us or strike back. It sounds as if you are doing everything humanly possible for your wife, and her medical team is doing their part to acheive the best possible outcome. Please don't forget to take care of yourself & try not to take her anger personally. I imagine she is mad as hell at cancer, the unfairness of it all and not at you.
I hope you have some supportive people in your life who can be there for you. This is a good place to find empathy, much hard-earned wisdom as well as hope &  encouragement. I wish I could just give you a big hug...a cyber-hug just isn't the same, but here's one anyway ((( ))). Best wishes...please keep up posted.
Ruthie
 

I have learned selflessness in these passing weeks. That all I can do is love her through it all. When things get hard, love harder. 
The truth about love 
It's more than romance. 
It's more than smiles. 
True love is about going through every motion of your day with pure love in your heart. 
It's about when things get rough, about not giving up. 
It's about when all else fails, love harder. 
Love, love is the greatest feeling. It hurts too. 
Love is what drives me each day. To wake up, to get through my day, to pull me through the moments when I want to give up. 
Love is about when the storm is overhead, that you let it be your shelter.  
Love is being there in the dark times. 
Love is pushing through it all and still seeing that person the same way no matter what.

Go Ruthie! Go!  Bask in the shade of that tall cotton.  Next NED is just around the corner.
Stay the course lady!
Tom

Cynde,
Every cancer patient should be so blessed to have someone like you in their life. I am so sorry that the two of you are having to endure the seemingly unendurable. I have said before, and I still believe it, that being the caregiver is harder than being the patient. You have all the stress, worry and emotional pain, not to mention the physical toll to your body, and frequently not enough emotional support & sympathy from others since you are technically not the patient.
It seems we  humans often lash out at those closest to us...maybe because we subconciously feel we can get away with it with the person we trust the most to not leave us or strike back. It sounds as if you are doing everything humanly possible for your wife, and her medical team is doing their part to acheive the best possible outcome. Please don't forget to take care of yourself & try not to take her anger personally. I imagine she is mad as hell at cancer, the unfairness of it all and not at you.
I hope you have some supportive people in your life who can be there for you. This is a good place to find empathy, much hard-earned wisdom as well as hope &  encouragement. I wish I could just give you a big hug...a cyber-hug just isn't the same, but here's one anyway ((( ))). Best wishes...please keep up posted.
Ruthie
 

Sounds like a GREAT report, Sherie! Enjoy!
Ruthie

Martin,
Unfortunately, the emotional roller coaster continues for me also despite more than 9 years of NED.  I still see my oncologist twice a year and knowing that and how persistent lung cancer can be keeps me on the roller coaster, disease-wise.
The road I choose is to realize that I can't get off the roller coaster (fear of recurrence) so I just try and find something in each day that brings me joy.  Joy is beyond happiness and it is the little things that bring the most.  Recent examples are: looking at the stars on a cloudless sky; watching my cat chase on a phantom chase through the house; admiring the wonderful produce at our town's farmer's market; and having a totally decadent and cholesterol-breaking hot wings and fries dinner.  I look for little things each day and when I realize I found one, I revel in it.
Thinking about my uncertain future, years ago, brought depression because of vast uncertainty.  My solution was to avoid thinking about it.  I can't control it, can't influence outcomes, and can't avoid consequences.  So, unless it is deliberate planning for a trip or a vacation, I don't think about what may happen next week, next month, or next year.  I don't always succeed but when I do, and I am getting better at it, and when I find something in the day that is joyful, I realize I am living the good life.
No one of us is alone.  Despite differences in our lung cancer recipe, we all travel nearly the same path.  There is treatment and then there is living.  Treatment is a living enabler and my challenge is to seek life meaningful to me despite treatment or fear of recurrence. 
Stay the course.
Tom

Sounds like a GREAT report, Sherie! Enjoy!
Ruthie

Hi, all ... and particularly, Barb! I'm still here and doing great. Hope you are, too. So sorry it's taken me so long to get back to everyone but time definitely slips away before/during/after treatment. Not to mention the rest of LIFE that's happening at the same time!!!
So ... concurrent chemoradiation went incredibly well. Had Carboplatin and Alimta w/IMRT radiation. My last chemo infusion was December 2, 2015 and final radiation was November 6, 2015. Remarkably, I had almost no side effects from either. I did not lose my hair but experienced "thinning" ... though no one except me noticed it. Polite? I think so!  I saw a dermatologist who recommended a multivitamin and 5000 mcg of Biotin daily plus switching to Head & Shoulders shampoo!? I'm holding steady and have never had to wear the wig I went out and bought when my cancer team GUARANTEED that I'd be losing my hair 2 weeks after the first chemo infusion. So much for that. The other side effect I experienced was tingling/numbness in my feet (mainly toes) and fingers (peripheral neuropathy). It started 3 days after first chemo and I still have it ... mainly in my feet. The good news is that it's just numbness and no pain. I can definitely live with that!
Have had 2 CT/PET scans since treatment ended. The first showed definite improvement and the second showed even more. The best part of the second scan was the Radiologist's comment: "Excellent response to treatment." I haven't had any additional treatment and my next scans are scheduled for mid-November. Fingers crossed!!!
Hope this positive news helps anyone who has recently been diagnosed or who is going through treatment right now. Again, I was diagnosed with inoperable NSCLC Stage 3A and I'm still alive and kicking. I thought doctors were making up the "positive attitude" angle but trust me ... they weren't. Take each day as it comes ... the medical advancements in treating lung cancer are huge!!
- Sherie

Thanks, Tom...Tall cotton all around.  Everything stable, still NED! Next scan in 3 months. Life goes on!
Ruthie

Ruthie, that is GREAT news!! I am so happy for you and your family.

This book is a must read!!  I finished "Scanziety: A Retrospection of a Lung Cancer Survivor" over the weekend.  I highly recommend this book for patients, caregivers and friends of patients.  I don't think that most people understand what our bodies go through during treatment, and Tom certainly had a tough time.  I think the book also helps people understand that, while cancer patients do have a cloud of uncertainty that will follow us the rest of our days, we should live each of those days to the fullest.   I enjoyed this book and I enjoy Tom's comments and support in this forum.  His success story gave me hope when I had mentally started to give in to the dark place.
Thank you, Tom.