I can totally relate to this post. I was diagnosed in Dec 2006 and had 4 1/2 years of good reports, NED, no progression of disease. I knew the cancer was still there - with Stage 4 it is always there - but I started to think I would be the one who beat it, I would be the miracle.
Then, in April, the scans came back bad. I too had Mets in my brain - at least 3 - turned out to be 6. I went through Gamma Knife radiation, and changed my meds.
It put me in a bad funk - for quite a while. I have been trying very hard to be very positive through this whole thing - but after so many years of good news, the bad hit harder than I expected. On top of that, when I was first diagnosed, I had a list of things I needed to get accomplished, organized, cleaned up etc. And, although I did a lot of it, I got complacent and started putting things off. With the new news, I went into the crazy, things have to get done mode, which caused me more stress. Then, add to that the new meds I am on - which make me very jittery, very sleepy and very "fuzzy" and I am not the same person I was a few months ago.
So, I understand what your husband is going through. This is hard. But, what makes it easier is talking it out. I try to always put my best face on for everyone, try never to complain, or say I don't feel well. That has gotten harder lately, but I thought I was still covering up pretty well. It turns out I was not! Now that my family understands how I feel, I feel more free to feel bad when I have to, to let myself be down sometimes. I would never have come out and told them, that is just the way I am - but when they came out and told me I was acting different it opened the lines of communication.
I think it is very important for you to let your husbands doctor know what is going on with him. Again, I thought I was hiding things pretty well, until my family told my oncologist what they were seeing - If there is one person we have to be totally honest with in this journey it is our oncologist - so if it is not going to be the patient it has to be the caregiver! His doctor may be able to change meds, help with anti depressents, suggests alternate therapies etc.
Take care of yourself Char - don't forget that part of it. You are in my prayers -
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