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At treatment yesterday my wife asked for a social worker to schedule a family meeting. She wants to tell everybody that she feels she has a timeline.
She told me again of how she wants to be at peace with her timeline. That she feels with treatment she is defined by the timeline that doctors are giving her. And I get it, she wants to make everyday count.
I try to not define our life by the hard moments. Coming home from chemo, and her body is worn out. My mind matches her body. My body feels the toll. And that she still wants me to be ready to begin to let go.
I asked the doctor about managing the discomforts. The pain options other than OxyContin. We discussed neurotin, to deal with nerve pain (as she has lived 30 years with MS). That I know I can't cure her as much as I would like to. But I want her to be in as least pain as possible. She recieved zometa for bone pain. If anybody has recieved this, if they can give me an idea of how their body handled it.
I asked the doctor if she has any of the mutations, just so I feel I have the idea of places to search for trials being run. Her testing came back negative for ALK and EGFR. They are going to order for the rest. She I guess chooses to know only what she wants- but I want the "silver bullet". Because it means the world to me if I can help her become a survivor story. Even if it's another year, or 5 or 10. I'm not ready to lose. I want to go know I gave it my all. Because any less, despite the outcome I will feel as if I failed her.
Hi Josie , New to the group , and am only 4 weeks post surgery . My experience was a Bronchoscopy to tattoo the tumor so the surgeon could . .visualize it . Then he did a VATS . Video assisted thoracoscopy ,and mediostinal lymph node dissection and biopsy . I didn't have a biopsy prior to the surgery ,my tumor was small and they were concerned about getting it with a needle. While I was asleep they sent it to pathology . The surgeon had told me if it was cancer he would remove the right upper lobe . It was adeno carcinoma and they did a lobectomy . Mine was Stage 1a , margins and lymph nodes were clear . The oncologist said I didn't need chemo or radiation , but I 'm to have a CT scan every 6 months for 2 years . I asked for physical therapy they came to the house for 3 weeks for endurance . My insurance won't pay for the facility that has the only pulmonary rehab . Outpatient . So I will be going to a conditioning program . My big problem is shortness of breath and fatigue . I am a pretty bad asthmatic as well . But they say the best thing is walking and use the incentive spirometer . I hope My experience helped some
Being a caregiver to a loved one with late-stage cancer is not easy.
Have you considered any in-person support groups for both of you? Counselling is often underutilized.
Also, I wanted to echo Tom's words that there are often options every step of the way. So many with stage IV lung cancer are living much longer, happier lives than we could have imagined 10 years ago. If you use Twitter, you will find many writing online at #lcsm. If possible, try to stay aware of the clinical trials that may be available - they often offer great care.