A Dilemma

It is Sunday afternoon, looking back on a busy, difficult week -- full of doctors & tests, not my favorite way to spend my time.
We saw Dr. Sunkin, our oncologist, Wednesday morning. It would have been before the fourth chemo, but with the PET scan report, that chemo is out of the question, simply not working. His nurse, who takes my blood pressure, weighs me, etc., took one look at the PET report and said, "Oh my god," and immediately came over and gave me a big hug and kiss. It was very sweet and reflective, I thought, that results like that are fairly rare.
Sunkin was very happy we were trying to get to the thoracic oncologists at Sloan Kettering for a second opinion. In fact, Tony had to push him to tell us what he would do next. He seemed to want to wait for the Sloan visit, but we wanted his take, too. His move: Alimta every three weeks (it's a 15-minute infusion, with fatigue as main side effect). He'd do two rounds and then scan to see if it is working. It works differently than the chemo I've already had, so whether it might be successful, who knows. In one study I read, it extended life 4 months in 30% of the patients, but it didn't say how many of those patients were failed first-line chemo like I am.
I pushed Sunkin for a prognosis, given the situation. He finally reluctantly said 3-6 months.
He also wanted another brain MRI, since that is a common place for lung cancer metastasis. So after getting out the door by 8:30 a.m. Wed. for the Sunkin appointment, I was out the door Thursday by 8 a.m. for the MRI. Bless Mara got up early to drive me, since Tony had two appointments he really couldn't cancel, having to do with final decisions about new health insurance.
I forgot that the MRI is a little difficult for someone who has a tendency to claustrophobia, and unlike the first one I had a couple of months ago, the tech didn't ask about that. So I had to hit the panic button 20 seconds in, come out of the machine, sit up, have some water, compose myself, and then go back in for the 20 minutes of testing. Once again I played golf in my head. I'm not sure how long I can hold onto those images....
Meanwhile, we still had no firm appointment at Sloan. They had promised to put us in a cancellation. So Tony called again and verbally stamped his feet, getting me to the top of the waiting list of about 10 patients. Several hours later they called back to say we could come the next day, Friday, at 8:15 a.m. They had already received all my scans, biopsy slides, chart, etc.
So we went into the city Thursday evening in time to have dinner with my mother, where we would stay. Ellie met us there for dinner, which was a real treat to see her. My mother, on the other hand, was not a real treat. She is 90, has some non-life-threatening health issues of her own (a Parkinson's like syndrome that makes walking difficult & can affect her balance), and I think she is very frightened to see her care-giver daughter die before she does. But her way of expressing it was to greet me with anger and hostility. Not exactly what I needed. So I tried to raise the real issues with her. Not sure I got through, though.
So then on to Sloan Friday morning, taken over by a great corporate car service that Ellie arranged for us. Interesting how different Sloan is than St. Peter's, much more upscale patients, NY Times all over the waiting room along with snacks & drinks. The thing that impressed me the most was their obvious understanding of cancer patients: the elevators all had two-seat benches, so I didn't have to lean against the wall, I could actually sit. Eleven floors in the out-patient building with each floor devoted to a different cancer.
In the end, though, the Sloan doctors had no magic in their tool box. They thought my case was unusual in its aggressiveness & lack of response to the chemo. But they too recommended Alimta on same schedule as Sunkin. They thought I could wait on the single brain lesion (you didn't really think the brain MRI would be clean, did you?)and it could be treated with a single stereostatic beam radiation at some point, if it became symptomatic. Down the road, I could have radiation for symptom control in the left lung. They were not at all concerned about the "little nodules" elsewhere.
They refused to give me a prognosis, saying there are just too many variables. They saw no reason to switch treatment to Sloan, that Sunkin would do exactly what they would. The doc said she uses Alimta "like water" there and that 10% of the patients respond, but again, that probably includes those who were successful on the first-line chemo.
So now we are faced with a dilemma: do we try the Alimta, even though the odds are so poor (Chris, my hospice case manager son, thinks the odds for me are probably around 1 or 2%) or do we call it quits, while I am still pretty symptom free and just focus on using the remaining time well. We are quite conflicted about it and so are polling all five kids to see what they think. So far we are 2 for Alimta (Ellie & Mara), 1 against (Chris, who feels these chemicals damage my own natural ability to fight the cancer, so there is a real downside beyond the side-effects).
Meanwhile, the one piece of good news we got last week was that the place right near the beach in Florida that I had booked for the month of Feb. last August, then cancelled when I was diagnosed, is still available. So we'll probably move ahead with that. But we are a little concerned about how far away Feb. feels, so we are also looking at two weeks in early Jan. for a quick hit of sun & warmth & sand -- all life-giving to this Leo.
I'll let you know what we decide. And I welcome your comments.