Monica7

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

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, my name is Marc and I am 38 years old.  June 1st, 2016 I was diagnosed with Stage IV Lung Cancer.  
 
I have a beautiful wife and two awesome boys, Bailey 17 and Landon 13.
 
April 2015, I ran my first full marathon, which was the single biggest achievement of my life.  I was so proud...  In July 2015 I changed jobs and moved into a very stressful position, which did not support my running life style, so I pulled back.  I still ran, but not nearly as much as I had been or wanted to.  In Nov 2015, I ran the first race since my marathon, which was the Rock n' Roll 1/2 marathon in San Antonio, TX.  After that run I felt like I had hurt something in my right upper leg (pulled muscle or something).  From that point on I felt like my body wasn't healing.  I would push myself to run and it would get worse.  Some days I would just walk thinking that would get me to a better place.  In February 2016, I ran the New Orleans Rock n' Roll 1/2 marathon.  I had a decent race, coming in under 2 hours, but barely.  Again, it took me several days/week to overcome my soreness.  But I kept at it...  In March I ran a relay race from Austin, TX to Houston, TX (20+ miles).  Felt ok...
 
Fast forward to Memorial Day 2016, I was rough housing with my son on what should have been a fun and memorable day.  I stepped back on my right leg and felt a pop.  I was down for the count.  After a day of sitting on the couch watching TV, I got in to see my family Dr.  My normal Dr wasn't there so I saw another Dr at the practice.  He gave me an exam and said It was definitely in my hip (not knee where i thought) and gave me two options 1) go home and rest 2) move forward with X-ray and MRI to find out what was going on.  That day I made a decision I normally would not have made.  I made the decision to get to the bottom of what was going on.  That same afternoon I had an X-ray which came back negative, which the Dr thought would be the case if it was muscle related.  On Friday, June 3rd I went for an MRI.  I was a little nervous, but went by myself thinking ok, this will tell me whats wrong and we can move on.
 
After waiting the weekend, Monday and most of the day Tuesday, I was getting restless...  So I started calling the Dr office trying to get answers.  I wasn't in any real pain, but I had jumped through all the hoops to get an X-ray and MRI, I wasn't letting go until I had the results in hand and could put this behind me.  So...  the moment I had been waiting for...  My Dr (now back from vacation) called me.  He said Marc, the MRI confirmed you have a fractured hip and a slight tear in you muscle...  (and then the bomb dropped)  He went on to say, but we see numerous lesions in your pelvic/femur/lower spine area, which we need to explore further.  My heart sunk...
 
So, the next day I went in for a physical exam.  The Dr felt it was necessary to take a few more steps.  He ordered Blood Work and a Bone Scan for the next day.  My wife and I were stressed, but glad they were moving quick.  The next morning while i was getting ready I received a call from the Dr office.  The nurse stated the Dr wanted me to go ahead and get a CT scan while I was in for the Bone Scan, so we did. That afternoon, my wife asked if we could meet with the Dr to get an update on the Blood Work which was taken the day before.  He accepted us and we met.  Unfortunately... the first words out of his mouth was "its not good".  My heart sunk and I immediately felt like I was going to faint.  He said there were a few notable things on the CT scan, but nothing major.  However the Bone Scan seemed to confirm the MRI findings.  After I picked myself we got scheduled to meet with Texas Oncologist the next morning.  
 
The next morning came...  After worrying, praying, crying all night I was ready.  I felt at peace and in good spirits and was on fire for God.  Unbelievable peace I had...  We went in and talked to the Dr.  She said "I don't know if you have cancer, I am not ready to say that".  I lit up...  I had hope... She then said I want to take Bone Biopsy of you pelvic bone to see what exactly the lesion is (bone island, benign, etc., etc.).  So, the weekend was good.  I was hopeful once we got the Bone Biopsy we would know what it was.  I researched every possible alternative to cancer over the weekend.  
 
Monday morning I had the Bone Biopsy, which was a piece of cake.  I still had hope and was at peace.  Wednesday, June 15th I got a call.  The Oncologist's nurse called me to scheduled a follow up appointment for the next day.  When she called, I said ok, but couldn't wait for the preliminary results for an entire 24 hrs.  She began to read the Dr notes...  and she said the work "lung cancer".  My heart stopped.  I was by myself and thought I was going to pass out.  Once I pulled myself together, I texted my wife and asked her to come home as soon as she could, which she did.  When she got home, she call the Dr office again and asked for clarity.  The nurse confirmed I heard right...  Lung Cancer...  The Dr agreed to get us in that same afternoon to talk with the Oncologist.  She gave me the news and said she was sending the Bone Tissue for additional testing to try and find out what type of Lung Cancer we were dealing with.
 
To date (Monday, June 20th) I have not heard back.  I told my kids and parents over the weekend.  It was hard, but God gave me peace and just the right words.
 
On the mental/spiritual side...  Day 1 I heard God say "Peace, Be Still"...  I knew that was in the bible, but I couldn't tell you where, so I looked it up.  It was in the book of Mark (how cool is that).  It is Mark 4:39.  I always thought "Peace, Be Still" was a commandment to the people.  However, in reading the story, it  unfolds right after Jesus fed the multitudes with the fish and the loaves of bread.  Jesus and the disciples were traveling to the other side of the water and during the travel a storm came.  Jesus was a sleep...  As the storm got worse the waves started to crash over the side of the ship, the disciples went to wake Jesus, saying "Master, carest thou not that we perish?"  Jesus got up and rebuked the wind and said unto the sea "Peace, Be Still" and the wind ceased and there was a great calm.  Jesus then turned to the disciples and asked them why they were so fearful and how is it they have so little faith.  The passage goes on to say...  And they were in great amazement...
 
After reading that, I made a decision...  The God who calmed the storm can (and will) heal...  I want to live...  I am going to live...
 
What I am looking for...  I want to first impart my love, peace and support into others.  And, I am looking for others to connect with as a positive influences.  Its probably needless to say, but the internet is filled with horrible things, which many of them do not support a positive outlook.  I want to create a revolution of Lung Cancer patients/survivors (all cancer patients/survivors).  We deserve to live.  We deserve to see our kids grow up.  We deserve to grow old with our spouses and love ones.
 
I am going to live.  I am here for each and every one of you.  I don't know your name, never saw your face or heard you talk, but I am here for you.
 
Marc

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

Hello Martin I'm glad to know there is someone else out there who has heard of this particular clinical trial. I am nervous yet excited all at once. Nervous that I may have wasted precious time if my body does not respond like the more conventional treatments yet excited that if the results are heading in a positive direction I can live without all the nasty side effects. Please do let me know if this is the course of treatment you have chosen. Best wishes in your fight. 

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

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

Hello Martin I'm glad to know there is someone else out there who has heard of this particular clinical trial. I am nervous yet excited all at once. Nervous that I may have wasted precious time if my body does not respond like the more conventional treatments yet excited that if the results are heading in a positive direction I can live without all the nasty side effects. Please do let me know if this is the course of treatment you have chosen. Best wishes in your fight. 

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

You are very welcome. I am pulling for you 

Monica,
Well I meant my past, my failed surgeries and treatments, the vast disappointment that for me was very hard to deal with.  I had to forget those expectations of treatment success, realize that cancer was persistent, and settle in for the long treatment process.  When you go one for five in treatments over 3 continuous years, one has a lot to forget.
I'm not sure I agree with the idea that I created a problem myself.  All that is necessary to get lung cancer is a pair of lungs.  Some 15 to 18-percent of those diagnosed are never smokers and genetic research has well established that cancer is a disease of our genes.  We all have every type of cancer in our genetic makeup.  What remains unestablished is what triggers cancer to start.  Yes, there is a strong correlation between my smoking and lung cancer but it is a strong correlation, not an absolute fact.
There are no miracle drugs.  Cancer or not, no one knows how much time we have in our lives.  Rather that worry about that, I choose to enjoy that which I have.  You have that power to choose also.
Stay the course.
Tom

Monica, I totally understand your fear. I too was diagnosed with stage 4 inoperable metastatic lung cancer and felt like my life was over. I was terrified of being on chemo and all the terrible side effects that I had heard about. Fortunately for me I tested positive for a gene mutation (ALK) and was started on an oral targeted therapy drug which I have handled very well for over 19 months now with no further progression of my disease. I still work, travel, spend time with family and friends and do all of the things I did before my diagnosis and there are even days now when I forget I have cancer. While cancer is still a very serious illness it is not the automatic death sentence that is was in the past. It is ok to cry and be afraid you would not be human if you didn't but don't allow yourself to stop living. Try to keep busy, join a support group, get out of the house and get a little fresh air and exercise even if it is just a walk in your yard, eat healthy and drink lots of water. These are things you do have control over. I am holding you in prayer, you are going to be alright.

Josie,
I am a 12 year, well almost 13 year, survivor with late stage diagnosed non-small cell, squamous cell, lung cancer.  I had conventional radiation and chemotherapy (taxol and carboplatin) first line treatment after a 2004 diagnosis to shrink my in situ tumor in the main stem bronchus of my right lung.  Then my right lung was removed using a thoracotomy procedure.  Unfortunately, I had post surgical complications that required 3 more operations to correct.
Then the cancer spread to my left (now only) lung and I had a total of two years chemotherapy treatment, again with taxol and carboplatin, although my last series of infusions was hardened by the oral chemotherapy drug Tarceva.  Still my cancer returned.  What finally caused my no evidence of disease or NED was stereotactic (CyberKnife) radiation to my left lung.
So to your questions: What to expect after surgery?  It depends on the type of surgery (thoracotomy, lobectomy or video assisted thoracic surgery (VATS).  A thoracotomy is most invasive and pain and recovery are longest with this type.  Still my pain from my first thoracotomy was not that bad because I had a morphine injector hooked to my IV line and was encouraged to activate it whenever I felt pain.  After my first surgery, I was discharged to home after about 5 days.
I needed assistance after recovery.  My mobility was limited.  I couldn't bend over and pick things up and my dressings needed to be changed every day.  But, if you have a minimally invasive lobectomy or VATS, you might not feel much discomfort but I bet you'll need some in home assistance.  I'd plan on it.
Researching lung cancer is scary.  But knowledge is power and if you learn about your disease you'll be a better self-advocate able to ask your treatment team "terribly preceptive questions" about alternate treatment means and side-effects.  Here is the best place to start your education: https://www.lungevity.org/about-lung-cancer/lung-cancer-101
More questions?  Ask away.
Stay the course.
Tom

Monica7,
There are prayer lines out there. Unity Village will pray for you for 30 days after you call them. It is normally very positive and uplifting. You wouldn't have to believe their way to get comfort from the call and their prayer which is more like an affirmation. It is called Silent Unity.  Call: 1-800-NOW-PRAY (669-7729)
I don't know if it helps but you could be feeling something very normal there. I would think that depression makes a person feel that way and it would be normal to feel depressed with everything you have on your plate. Try to find 5 things you are thankful for everyday.
I also had not heard of stage 5

Monica,
Metastatic lung cancer beats coping to a pulp.  I didn't know there was a stage 5 but no matter, if it has spread it is beyond coping.  How does one live?  Now that is a better question.  You've identified the solution: "enjoying the gift of each day."  I tried for 3 years to cope and failed miserably.  Then I settled down to forgetting the past, declaring the future irrelevant and just trying to find a little joy in each day.  That is the way I live.  It is not a perfect life but my life before cancer wasn't perfect.  It is what I have and I'm satisfied with that.
This is a lot to digest so I'll keep my response short.  Feel free to tells more about your type of lung cancer and treatment so we can help.
Stay the course.
Tom

Skmcornett,
Clean PET scan - wow!  That is grand good news!
You are clearly right about statistics not mattering.  What matters is you've got clean scans, you are NED, and be will walking the park at the DFW Breathe Deep event.  Almost everything else is irrelevant except for one thing - your celebration!
I would be at the DFW event but for a very important life celebratory moment - the birth of my first grandchild.  So take a lap for me.
Stay the course.
Tom