I Have a New Least Favorite Word

I think I’ve written previously about the studies that have shown that terminal patients and their doctors frequently talk past one another. The doctor will say, “This treatment will extend your life” meaning “this treatment will extend your life by three weeks” but the patient will hear “this treatment will extend your life by three years.”

It would seem my oncologist has read those studies as well. I can’t tell you the last time I had a conversation that involved the word “months” more than today’s scan review with the oncologist did. Irrational hope springs eternal, but my doc clearly doesn't want the fault for any unreasonable expectations vis-à-vis life expectancy sitting on his shoulders.

In other words, today’s scan review comprised pretty much entirely bad news. 

Here’s the rundown:

My tumor markers, which until now had been creeping up but generally running in the vicinity of 11 to 14, jumped to 18 prior to my last infusion and were 47 on Wednesday. Higher is not better.

The largest tumor in my liver was roughly a centimeter bigger across all dimensions, growing from about 3x3x3 to 4x4.5x4. And since the point of comparison is volume, not distance, this is growth on the order of 300%, not 30%. The good news – ok, I lied; there was some good news, at least if we measure on a sliding scale -- is that this particular tumor sits in an area of the liver that can actually absorb a fair amount of growth before the cancer will get in the way of organ’s functioning. I suppose that's something.

The other liver tumors showed similar signs of growth.

More problematically, the “questionable” spots on my abdominal wall were also larger –- and were joined by a new friend -- which means their make up is no longer in question. It’s cancer. The biggest downside of this is that it definitively cuts off anything other than systemic treatment – i.e., chemo – since chopping or radiating the cancer out of my liver wouldn't do me much good. The cancer will just migrate from its vacation home in my abdominal wall.

Interestingly, the doc made clear that he didn't think this turn was specifically caused by my most recent cancer vacation. He could just be trying to be nice -- and given how frustrating a patient I must be, I appreciate the effort -- but he was pretty adamant about emphasizing that, though the vacation made it a little hard to be 100% certain, the signs are that I was growing resistant to the drugs. Doesn't really matter, though. Even had I known for sure this would be the result, I'd still have taken the vacation. It was worth it.

So where do we go from here? I’m so glad you asked. Here are the options I was given:

Option 1: Embrace the inevitable, and do nothing. 

Pros: No side effects. 

Cons: A very questionable likelihood of seeing my forty-ninth birthday.

Option 2: Start back up on the Xeloda/Avastin/irinotecan treatment I abandoned last month, so as to confirm the oncologist’s suspicion that it was no longer working. 

Pros: A definitive answer, and possibly, though not probably, a few extra months. 

Cons: All the same side effects I was having before.

Option 3: Go back on the oxiliplatin/5FU treatment that started this adventure two years ago and which I despised, so as to confirm the oncologist’s suspicion that it likely wouldn’t work. 

Pros: From my perspective, none. 

Cons: Even worse neuropathy, and the damn forty-eight hour infusion pump.

Option 4: Some new pill that just got FDA approval. 

Pros: No infusions (which means ink is still possible, cause, yeah, that's important :-) ), and a low risk of side effects. 

Cons: It’s impact isn’t really well known but the effectiveness shown in trials wasn't huge (trials showed it adds about two months -- there's that word again -- to a baseline lifespan of four to six). Also, insurance companies haven’t heard of it so it’s a battle to get them to pay for it.

Option 5: Clinical trials. 

Pros: “Since we don’t really know what to expect in a phase 1 trial, there’s always the possibility of a miraculous response.” 

Cons: Yeah, right. We talked about three or four potential trials, and most of them were, at best, Hail Mary passes – e.g., Drug X doesn’t work, and Drug Y doesn’t work, but maybe if we give them together the combination will have an effect. My oncologist’s eyes didn’t actually roll back into his head when he was talking about them, but it was pretty clear he didn’t see the trials currently available as being of much value to me. (Apparently, my cancer doesn't include any of the genes you want it to have if it's going to be responsive to current treatments. Maybe in "five to ten years." Thanks, Mum & Dad!) Also, there’s always the chance you’ll be in the control group and get placebo, in which case you're hassling with infusions and the rest for no possible personal benefit. And regardless, you’re back on bi-monthly infusions, which, since it's a trial protocol, cannot be flexed, thus making any further travel extraordinarily challenging.

As you can plainly see, there are a lot more cons in this list than pros. We're definitely looking at one of those "least worst" choices. So let's see...

Option 2 and Option 3 are non-starters. I can think of precisely nothing that would send me back to the forty-eight hour infusions (Option 3), and after a week of feeling pretty good, I can't say I'm really excited about feeling lousy again -- especially for something the doc doesn't think will really work (Option 2).

Despite the frequent tone of this blog, I can’t say Option 1 is really speaking to me either. I can’t provide a list, but it feels like there’s more to do before my time on this planet is over. (I wonder if that feeling will ever go away? I suppose probably not. Anyway...) So that leaves 4 and 5, but the list of cons on Option 5 is just too bloody long to make that choice now. Maybe when things are -- or rather, I am -- slightly more desperate.

So Option 4 it is. The doc’s going to start the battle with the insurance company to get the drug and, assuming that’s successful, in a couple of weeks I’ll get trained on it -- what sort of pill do you have to be "trained" to take? -- and then start it up. This one doesn’t come with infusions and is apparently a five days on, four (?) days off, five days on, two weeks off schedule. Which seems pretty manageable, and also means I'll only be going to SCCA for checkups once a month, rather than every three (or two) weeks. I'll miss talking with my PA, but not enough to warrant making a different choice.

In any case, if my clock wasn’t ticking like a time bomb before, it certainly is now. (Suddenly, I have a new understanding for Marisa Tomei in My Cousin Vinny.)

And one final message for those of you reading who are more than just casual blog surfers: 

Remember: the first of the five stages of grief is denial. Embrace it! I certainly have. If my head was any deeper in the sand, I’d be back in Australia. This weekend I will join the crowds of people watching pretend superheroes beat each other to a pulp, and I will enjoy every second of the teasers for the films that are to follow in the coming years, and as they play I will tell myself that I will be around to see them, even though it’s probably not true. And if I'm lucky, I can extend the denial long enough that I can die, er, pass away before the anger and bargaining start.Though now that I think about it, I do have some awfully snazzy stuff I'd be willing to trade away.

And for some reason I'm suddenly reminded of this Monty Python sketch...