Chapter 12

2005

Despite our worries about having kids, we managed to produce four of them, two girls and two boys. The youngest was not entirely deliberate. We both wanted a fourth child, but we were aware we were closing on forty, and we couldn't quite decide if we wanted to go for that fourth child or not. One night we got reckless and gambled a little, and a month later I found I was pregnant.

After three kids, we were both reasonably conversant with the root cause of pregnancy, so neither of us was particularly surprised. Don made a show of grumbling about having a fourth child to feed and get through college, and made dire noises about our probable bankruptcy, all the while looking extremely pleased with himself.

It was the only time we'd gotten pregnant on our first attempt, and the eventual result was a charming (although opinionated) little boy. If he was an accident, he was a wonderful accident.

When Don was diagnosed with cancer again, I started to think of my delightful toddler less as an accident, and more as a gift from God to help our family get through all this. There were days I couldn't have gotten through without that pair of chubby little arms clutching me around my neck, or without hearing his gleeful giggles, and I'm sure Don felt the same way.

The baby's smiling face and cheerful laughter were a light in our darkness. He was a happy little boy, totally oblivious to anything bad going on around him, and he went through life with a gleeful smile.

The baby was a reminder that no matter what happened, Don would leave part of himself in this world.

January, 2007

Don had a bone scan done, and it confirmed that his bones were involved. The oncologist showed us the bone scan, and even to our untrained eyes, the cancer involvement was obvious. The cancer showed up as distinct dark spots in many of his vertebrae and his ribs, and possibly in his pelvis as well.

This meant that the cancer was categorized as Stage IV-- the most advanced stage. The difference in prognosis was hardly any difference than it had been for Stage IIIB (any lung cancer that involved a pleural effusion was classified as at least IIIB). Even so, knowing that he had the most advanced stage of lung cancer possible made both of us feel desperate, giving us the terrible feeling that time was running out on us.

Now that we had all the information we needed, Don needed to make a decision about what treatment to use. His options were a couple of more-or-less standard chemo treatments, or a clinical trial involving Tarceva.

Tarceva was an experimental drug, and as the doctor explained to us, whether it worked or not depended on whether or not the patient had a gene that was responsive to it. Unfortunately, there was no way of knowing in advance if Don had the necessary gene. If he was responsive to it, it seemed like it might keep him alive longer than standard chemo, based on what we'd been told, and what we'd read on the internet.

If we went the Tarceva route, we had two options for clinical trials. One trial had two groups. One group that received Tarceva, and the other received Tarceva and chemo. The second trial had all patients receive chemo, but one group received Tarceva and the other received placebos. There was, of course, no way of choosing which group you wanted to be in-- placement was random.

We had a discussion via email, while Don was on breaks at work:

Ellen: I don't like the second trial suggested. Placebo vs. real drug does not thrill me. You might as well just take regular chemo.

Since Tarceva has a better response with nonsmokers, my vote is still for the Tarceva trial, particularly since he says if it doesn't work in six weeks, they'll put you on chemo. I'll grant you that six weeks is quite a while in your situation-- but the chemo is NOT going to save you, almost certainly. Tarceva probably won't either, but it sounds like it has a better shot at it than chemo.

Why don't you ask him why he doesn't just put you on chemo and Tarceva himself? I think the answer is that your insurance won't pay for it, because the FDA approval is only for second-line treatment (after chemo has failed). But it couldn't hurt to ask.

Don: We don't know the chemo will be ineffective. It may be very effective, but I agree the second trial isn't really an option. I'm leaning toward trying chemotherapy first and then the trial if the chemotherapy doesn't work. However, I don't know if trying chemotherapy first will make me ineligible for the trial so I've asked him that question.

Ellen: The other doctor said if you could only get into a trial when pre-chemo, you should do it. That appears to be the case here.

After some discussion, Don decided what he really wanted was to throw everything at his cancer all at once-- chemo and Tarceva and anything else we could think of. Unfortunately, due to the FDA's limited approval of the drug, that wasn't an option. There was one trial that would allow this-- but Don had a fifty percent chance of being put into the group with a placebo, and I didn't like that idea. We didn't have time to muck around with placebos.

My feeling, based on what we'd read and heard, was that chemo was pretty much useless as a long-term measure, and probably wouldn't even do much for him short-term, but that if he had the necessary gene, Tarceva might keep him alive a lot longer. Furthermore, it appeared he wouldn't be eligible for most trials involving Tarceva once he'd had chemo. So I was leaning toward trying the Tarceva first, and Don's primary oncologist thought it was the best idea, too.

In the end, Don rolled the dice and decided to go with Tarceva. It was an oral medication, which he took twice a day, and just like any cancer treatment, it had a long list of side effects, which we hoped wouldn't be too debilitating.

In six weeks, we'd know if the Tarceva was working. And if it didn't... then we'd give chemo a shot.

Read Chapter 13 here.