A newfound aversion to data . . .

Good Morning All:

Before I get started I posted a picture that was taken from my Mom's camera while I was doing my last post. I get a big reaction to the pictures so I figured I'd post it. Aside from me looking bored it is a pretty good picture. I think you will all agree I am still not frail and looking pretty hale and healthy. For Blogger readers, I edited the prior post to include the picture. For Caringbridge reader I added the picture to the 'pictures' section next to the one with me and Santa.

This afternoon Marla and I travel back to Hopkins to meet with Dr. Connolly. This meeting is a follow up to the positive test results that I've been able to report recently and shifts, in my mind, the focus from the here-and-now to the what's-next.

As I've mentioned in prior posts this is a sort of anxiety-laden process as I am going from a patient who is being closely monitored to one that is being released back into the cruel, cruel world eventually to experience come-what-may. I suppose it is akin to that first big push while learning to ride a bike or landing your first plane.

As I lay awake at 3:30 this morning thinking about today's meeting and attending to the questions flooding my head I was drawn back to the information I read in a couple of articles dealt with my diagnosis and the treatment regimen that I am on. I thought, on one hand, that I might share some of that information in a blog post--perhaps even today's. But, I scrapped that idea and here's why:

We've all heard that we need to be educated consumers of information on the internet. While typically that refers to trusting fully the sorts of things we read on Wikipedia, for a patient facing a serious illness like cancer there is a commensurate amount of information to match the demand for information. With all there is to wade through, scientific, opinion, and the ever-present, well-disguised sales pitch for miracle drugs one can be mislead by misinformation or mired in irrelevant information.

The irrelevant information is harder to discern because it is often reported in those sources we might otherwise come to trust--the scientific. It took me some time to relearn (as it was part of graduate education) that just because it is reported in a scientific journal and it is data, what I read may not have any relevance to me. I believe this is broadly true when it comes to the data one might read on cancer statistics and know it to be true for my specific diagnosis. What gets reported in these articles are often the results of clinical trials or are meta analyses based on 'linkable' data. The more complete and more predictive these data are the better able they will be able to serve as a crystal ball for what may happen with me.

Clinical trials themselves struggle to rise to this level of long term predictive value because the sample sizes are based on the need to prove that a drug, or drug regimen, serves as improvement over existing treatment options. This includes some measure of sustained improvement but I'm looking for a crystal ball that looks out over the decades--not to 5-year survivability statistics. Additionally, while the teams that collect these data may continue to collect survival rates, they are also always seeking improved treatments and other trials to conduct. As such, the focus changes and the long-term collection of data may be either stunted, abandoned, or at the very least, lost amidst the discussion of the next best treatment option.

To provide an example of what I mean I can hearken to some of the lessons I learned when I exposed myself to these sorts of articles last time. I know that several of my 'experiences' point to an increased likelihood of a prolonged remission/cure. Apparently, the existence (and obviously, cure) of a mass in my chest is correlated with better survival rates. Additionally, so is my quick response to treatment. However, my age is just over the threshold for being a negative factor. I was 35 when diagnosed and turned 36 just after my first hospital admission. I didn't like to learn of any 'detractors' when it comes to long term survivability and I stewed over this information for quite some time (though it was more disturbing that everything ended with a 5-year horizon--"Hey we got you to 5 years, success!"). It wasn't until I put in perspective that the 34 year-olds were lumped in with the 22 year-olds (or something like that), and the 35 year-olds were lumped in with the 50 year-olds (or something like that), that I realized that there was at least room for question. Certainly, finer factor analysis is possible though in the sample sizes often reported in clinical trials we would quickly get into small sample sizes and the flakiness of data that comes along with them.

Since I felt strong, healthy, upbeat, and young coming into this process and continue to feel this way during the process I have decided to ignore that 'detractor'. Heck, my WII Fit age (sort of a fitness level measure equated to 'age') once dipped below 30--that's got to count for something?! So, this brings up the larger issue and the reason that I will not be revisiting those articles any time soon. While the information they provide is important for me to know, understand, digest, as part of being an active participant in my own treatment, it is also important to the patient to know and understand that the number of factors involved in long term survivability of ALL (the lymphoma version included, and I'm sure other cancers and illnesses as well) hinge on so many factors, many of which are unknown or only suspected at this time, that it is impossible to read an article and get a sense of where one stands. Despite what is possible via statistical analysis, it would be a tall order to expect the author of a scientific journal to adequately discuss his/her positive finding in an effective manner AND for them to try and tease apart and discuss effectively all possible permutations of these factors and what they might mean for long term survivability (assuming long term data exists at all).

As a result I have decided that I need to lean on the artistic side of the cancer treatment process. There is a reason one makes the trek to top medical institutions such as Hopkins or enrolls in a clinical trial (I have not enrolled in a clinical trial to date, by the way) and it is to avail oneself to the expertise of the physicians who have seen the permutations of factors and have the exposure to the number of cases necessary to have 'suspicions' about the as yet unconfirmed factors to long term survivability. Their data is experiential and when one is interested in something a bit more 'concrete' than a 5-year survivability rate, this is where he/she must turn.

This is the foundation of the long list of questions I have for my meeting with Dr. Connolly today. I'll be curious to know just how far she'll indulge me in my roundabout effort to unravel her 'artistic' interpretation of my case.