My Mom's Story

My Mom has severe stenosis of the spine and was going in for pre-op surgical testing when they discovered a small "spot" on the lower lobe of her right lung. She then proceeded with the usual battery of tests, i.e. PET, needle biopsy, etc., which proved positive for lung cancer. Surgery was scheduled to remove it, and upon surgery, they discovered the 25cm mass on the lung that they originally expected, plus discovered that her right lung was "peppered" with cancer. They deemed the surgery as "inoperable," and closed her back up. At that time (June of 2011), she was given an estimate of 1-2 years, expecting that the chemo would be effective.

After rehab at transition (1 month), she came home and started chemo (carbo-plat and gemsar (sp?), and completed six rounds. Earlier this month, she had another PET and it determined that the growth had matured (10 mm), and that she also had cancer in her spine. In other words, the chemo has not worked. We met with her oncologist and he said there were two options: 1, discontinue treatment, whereby survival time would be approximate 1-2 months, or, try Tarceva and see where that leads (he told my Mom, "I would recommend the Tarceva if you were my mother). He felt that doing the Tarceva orally, at home, would make her feel like less of a "career patient."

I've done some research on Tarceva and learned that it, at best, is a "band aid" and usually gives 20-25% extension of time with this disease (NSCLC). With an average life expectancy of 8 months from diagnosis to death, this means another two months or so, if we're lucky.

In the meantime, her back pain has increased substantially in the last two weeks, whereby she can't walk, and can transfer from bed to potty chair, bed to wheelchair, etc. only with tremendous assistance from me and my father... I can hardly bear to watch this wonderful woman of 77 suffer with so much pain.

I am the primary caregiver, and she is currently on 125 mcg of Fentanyl/72 hours, 8 mg Dilaudid q4, with Baclofen and Oxyprozone as needed to help reduce swelling in the back due to the stenosis, etc.

My questions are many and are haphazard at best... What can I do, if anything, to help keep her at home and comfortable, how close are we to the end, when to call in hospice, was the doctor just going through the motions when prescribing the Tarceva, etc...?

She and my father have been married for 56 years, and my father is 80. I'm just as worried about him as I am about her. I've moved in with them, stopped working, and am devoting all of my time to their care and comfort. My dad is relatively healthy, although I worry about him too... He has been in a state of denial, I'm afraid, and actually asked the doctor two weeks ago, in the doctors office when her told us the chemo hadn't worked, "are you telling me this disease is incurable?" It broke my heart. I don't know where his head has been when the doctors came out of the initial surgery and told us "it's inoperable, and she can expect to survive 1-2 years if the chemo works." I have tried to be as forthright and practical as possible, without having a defeatest attitude... My mother knows she is dying, but I fear she will hang on longer than she needs to, for the sake of my father...

I'm beside myself with worry, sadness, and everything that goes with it... this situation is so distressing and I feel completely hopeless.

Can anyone offer me any words of wisdom or anything remotely hopeful...?

Thank you all for reading my story, and please keep my beautiful and wonderful parents in your thoughts.