One of the issues I’m wrestling with at the moment is that I have a thoracic surgery date of January 23rd, ten days from now. This date is contingent on some low-probability events out of my control (for example, a scheduling conflict at NIH), but also on at least one moderate-probability event over which I have partial control. That is to say, if I fall ill with a respiratory infection, or frankly much of anything else, the surgery will be postponed. Due to the scheduling demands, if it is postponed, it will probably be postponed by at least a couple of weeks.
The same was true when I had my left thoracotomy back in 2009, at the time my very first metastasis was removed from my left lung. But back then, I was dealing with a Portland-based surgical team, so if the date slipped, it was only inconvenient. We already have airline tickets tied up in this Maryland date. Also, and far more importantly, back then I had a single metastasis with a six-month doubling rate. A slip of a week or two was relevant only to my feelings about walking around with a tumor in my left lung. And my life expectancy was still measured in years, at worst case.
Now, I have about 30 metastases, with an eight-week doubling rate. My life expectancy at the moment is perhaps six months. Call it 24 weeks.
A delay of two weeks is a meaningful fraction of the rest of my life. 1/12, to be specific.
A delay of two weeks is an opportunity for my widespread tumors to grow another 25% or more in size. And possibly grow so far, so fast, that I will no longer be healthy enough to be operated on, as at some point the surgical risks exceed the surgical benefits, even in the context of a clinical trial.
I invite you to imagine my fears.
Insofar as oddsmaking goes, that’s a mug’s game for someone in my position. I have been a dead man walking for a year now.
On the one hand, I am very lucky and tough to have lived this long in the face of my disease. I’m pretty far out on the bell curve of survival time. Most people with my cancer are either cured or dead by the time they get to the point I’m at.
On the other hand, the trial protocol I am participating in has been tried on a total of several dozen patients. Most of those patients had a completely different class of cancer than I have. I am part of a new cohort with solid tumor cancers of the abdominal organs, which has numbered about a dozen so far. Of those, one had a cancer very similar to mine. That patient met with meaningful success, significant shrinkage of tumor activity over time. No one has yet been treated with metastatic colon cancer.
I am the first.
And the data set that I’m banking on demonstrates about a 1/12 track record with respect to my hoped-for outcomes.
Sense a pattern here?
Of course, these long odds are why it’s a clinical trial. If this was a proven treatment, it would be available clinically. That’s the whole point of clinical trials. At some point, the doctors have to see if the treatment works on real patients with real disease. At times I’m capable of being pretty rational and dispassionate about this. I’m even enthusiastic about participating in what may eventually prove to be life-saving research. If this protocol has value for colon cancer, it will help address one of the leading cancer killers in the United States.
But for me personally, emotionally? The cards I hold in this game keep drawing lower and lower with every round I play. The stakes grow higher and higher. I measure out my life in weeks. The cost of a simple head cold could be me washing out of this trial, or least getting so much sicker that the protocol has a lot more work to do in order to help me.
Other people’s sneezing has become a life-and-death issue for me.
As a result, I’ve cut back or canceled my social plans for the week. I will run only essential errands. I will stay home, stay warm, stay hydrated, use a lot of hand sanitizaer. I will be paranoid. Every day I’m playing for my life.
So, yeah, stress much?