Friday, January 20, 2012

The future (statistically speaking)

Today (and by today I mean for the last year and a half) I have been thinking a lot about the future. It surprises me that I'm not thinking about it constantly, but there are so many unknowns that its a subject that is easily avoided. In terms of longevity, life-expectancy, etc., there are boatloads of statistics that could make an argument for nearly any outcome. As previously mentioned, I don't really believe in statistics. Or rather, I get the concept and understand that they are helpful for allowing people to quantify things and put them in neat little boxes of expectation, but I maintain that statistics are irrelevant in my case. I will either live longer or shorter than other people in my situation. The likelihood that I will live precisely the average lifespan that is normal for people in my situation is unlikely. Statistically speaking.

When I spoke with my new oncologist (whom I shall call Dr. Straightshooter because of his ability to give the real, unvarnished facts if asked) he laid out the situation in a way that no other oncologist has before. I mentioned to Dr. Straightshooter that one of the major reasons I was changing oncologists is that I couldn't get Dr. Grampa to give me a straight answer to save his life.

Dr. Grampa would talk in parables and similes. When asked, for instance, how likely it was that I'd be back in chemo within the next 9 months, he said, "Well, I'd like to know how many times I'll have to mow my lawn next year, but there are some things we just can't forecast this far ahead of time." It would be cute and endearing if we really were talking about lawn mowing, but we're trying to figure out if I can continue getting the hell on with the rest of my life, to whit: taking a full 5 month semester of classes in fall without having a drop all of them for another chemo series.

My take on him is that he's very close to retirement (many of his parables had to do with playing the market accurately in preparation for retirement) and his aversion to being tied up in any malpractice lawsuits post-retirement. His strategy? As far as I can discern, his strategy for these next couple of years is to be as vague and noncommittal in person on any predictions of anything, and also to be highly pessimistic in his written reports. Also, do everything strictly by the book with no deviation. To the average patient (who doesn't read the written dictated notes afterwards) the picture would be very different from the story he paints in the office visits. Which involves nothing more than poking me in the stomach, feeling my neck, and jotting down my pain level. That way he can't be held accountable if it works out different than he said it would. Or maybe he's one of those doctors that is used to dealing with patients who don't want to hear bad news. And no one really does, but if the news is bad, I'd rather have it than nothing. And if the predictions are gloomy, I'd rather have them verbally than read them afterward in a cold, clinical, written transcript of a dictated report about me. 

I wasn't asking Dr. Grampa to sign a sworn affidavit saying that I would be guaranteed of a full semester off. I was asking whether it was likely that I would need chemo again within 9 months, which would mean that I could take some control of the situation and plan to do chemo over the summer. This would give me the illusion of having some control of my life, which would be good. Again, once we got that clear, he still wouldn't predict. He also really likes to say that he doesn't have a crystal ball. Which really made me want to buy one for him. 

So, Moving on to Dr. Straightshooter, I asked him a number of the same questions that I'd asked Dr, Grampa, and I did get the answers that I was looking for. Yes, they were not really positive. But I prefer having information than the opposite, even when it isn't positive.

I mentioned to Dr. Straightshooter that I knew almost nothing about what the progression of this disease would be like. Its an oddly lucky situation to be in that while I am at stage 4 (the highest it goes), the cancer has not apparently affected any vital systems. The cancer has spread to the lungs, but only on a small level and -- as Dr. Straightshooter put it -- there is a lot of redundancy in the lungs. This cancer also has a habit of spreading to the liver. That one scares me, as I don't welcome the idea of liver failure. He mentioned that the liver has a lot of redundancy as well. One of the most encouraging things he said is that, "we'll know before you know" that things have gotten serious. The spread will show up on scans, etc. before I start showing signs of jaundice, etc. It can also spread to the bones. That just sounds painful. As far as we can tell, it is not in the bones either.

There was a scary statistic that Dr. Straightshooter mentioned (and I'm actually kind of glad that no one told me this initially): when a patient is first diagnosed with stage 4 cancer (which was about 9 months ago) a common life expectancy -- after that initial diagnosis -- is about 2-4 months. Which brings us back to the fallibility of statistics.

Don't panic. I'm not going to drop dead tomorrow. Before anything like that happens, the cancer would need to affect a vital body system, and it hasn't done that. Hopefully it will not. There are no clear predictions other than saying that (statistically) it will, eventually. As it stands, it is conceivable that I could carry on for a good long time (which is annoyingly vague, I know) with chemo keeping things neutralized as much as possible. There is the possibility that chemo will eventually have a reduced effectiveness. There is the possibility that I will be too sick to get enough chemo to make a difference. There is the possibility that it will spread, regardless. There is also the possibility that a Airbus A-330, on final approach for MSP, will lose engine power and plow through my house when I'm sleeping. Though -- statistically speaking -- that is somewhat more remote.

Basically -- and this is what's really hard -- I need to be at peace with the idea that I may depart this earth well before my time. I also need to prepare for the possibility that I'll be here for quite a long time yet.

And this gets to the very heart of this quandary. I've been working since 2007 to be a teacher. I picked up my long-abandoned BA in '07 and finished in 2009. Then I went straight into a Masters in Teaching program to get my high-school English teaching license. This is something that I've wanted to do for 20 years or more, but got sidetracked by an career as a designer and writer. Which I enjoyed, but had for the most part burned out on. Right now I have 2 full semesters of school (plus a full semester of student teaching) to go. The problem is, I can't seem to be off of chemo long enough to actually complete a semester. 

I need to face the possibility that I may simply never be able to get enough traction to complete another full semester of school. Or at least not in the next few years. If I put that dream aside (which makes me very bitter) I may need to be okay with the idea of continuing do to what I do now. Which recently has been being under what amounts to house arrest while going through chemo and dealing with the crippling back pain. And, as a side note, unless I get the back pain addressed soon, I'll continue to be on so many painkillers that I shouldn't be driving to work, let alone actually working. So my options are that I can keep teaching classroom driver's ed. This is a known quantity, I'm good at it, I have a great boss and I like the work. Really, other than the fact that it's not what I had in mind for a career goal, there's nothing wrong with it. 

I also just went through the excessively laborious and needlessly-complex process of becoming a substitute teacher. Subbing is teaching, but its also highly-stressful. Some teachers prefer it over classroom teaching because there is no lesson planning and no homework to grade. To me, it sounds extra-hard mentally because you don't get to build a relationship with the students, especially since there are 30 of them and they know that it's party day because there's a sub. For this reason, subbing seems like about 90% classroom management. Great experience if you have a thick skin, but I'd rather teach. I'm pretty good at classroom management by this point, but it's my least favorite part of being in the classroom.

But I went through the process of getting the license anyhow. Partially so I can say that yes: I'm a licensed teacher. Of sorts. Its a little like choosing between dropping out halfway through your BA or getting an AA. It's a half-assed measure that is nonetheless better than nothing at all.

So, I got the sub license partially for me, so I can look at it and remind myself that I can be teaching in any Minnesota school where there is need and an opening. Albeit for a day. And with the understanding that the students and I won't be able to get to know each other, and that the students will most likely be trying to make my life hell. 

The substitute teacher license could also help me when teaching driver's ed. Sometimes we have classes inside schools, and the sub license would make me more attractive to the schools. At very least, it should mean a raise. But, perhaps oddly, teaching driver's ed already pays a lot more than subbing.

With spring semester approaching, I have a decision to make. Take classes (which will cost about $5,000) and face a decent (statistical) probability that I'll have to drop them or take incompletes. Or, take the time off and teach. And travel as I'm able.

Right now I'm leaning towards not taking classes. In an odd way, this is taking charge of my future. Or rather: filling it with fewer opportunities for disappointment. Is that sad? I can't really tell. It feels a little like giving up and a little like being a realist.

When I go down to Mayo next week I'll be able to speak with all 3 of my docs down there. Hopefully (but not necessarily) I'll have some predictions as to what the next few months will be like. Whether it's back to chemo or take a breather is unknown. Regardless, I still have some decisions to make in the next week.


RachaelHD said...

I am thinking that maybe going ahead and taking a semester of classes is a good idea. Given that the back pain isn't related to the cancer, I think getting out and moving around like you do at school might help your back. And I think focusing on something positive and moving forward are also good ideas. On the other hand, travel and work seem like very good choices too. At any rate, good luck deciding. When would you have to register for classes?

Kevin said...

I'm big on "preserving optionality" - which is fancy talk for "keeping your options open." Whichever course of action involves closing off the fewest avenues is the best one. The hard part, of course, is figuring out which one that is.

If you register for classes, can you drop them without significant financial penalty? Could you register for one or two classes, limiting the workload and expense?

Emily said...

"Right now I'm leaning towards not taking classes. In an odd way, this is taking charge of my future. Or rather: filling it with fewer options for disappointment. Is that sad?"

absolutely not sad. it would be a decision to live your life right now, rather than planning to live your life at some point in the future. taking classes can also be a decision to live your life right now, if the classes themselves are rich and satisfying.

i think you should do what will make you happiest.

M said...

I'm already registered, but can drop them within the next couple of weeks (after the course begins, even) with no financial or academic penalty and with no "W" showing up on my record. Taking these two courses together (that I need to take next) is commonly regarded by students and advisors I've talked to to be a huge amount of work in a single semester for a student in normal health. One course is easier than two, but extends the amount of time until graduation even further. Another option, which I've missed the deadline for, is taking one of the online courses I need with a classroom course. But the online courses, which are offered through another institution, began a few weeks ago.

Eclector2 said...

You illustrate the conundrum very well. It is a hard decision and whatever you choose it will be the right one.

My mediation guru tells me that living in the moment is the way to find internal peace, relating this to your situation it would suggest that trying to plan too far into the future (especially when there are those unknowns) will be stressful and will detract from your enjoyment of your present (actually not so bad) moment.

Eclector2 said...

Re: Your life expectancy.
I liked your new doctor and agree that he tried very hard to give us straight answers. But I heard a different, also not so great, answer to the question of prognosis. I heard him say the average for stage IV is about 2 years, not 2 months. That answer makes me cry everyday but it's better than what you heard. He also stressed that it was the "average" and that you weren't the average bladder cancer patient. He was trying to be reassuring.
Love, Mom

John Slade said...

Thanks for sharing a big, thoughtful, tough post. You've always been anything but average! Hope Boo has some sage advice for you.

Dave Matheny said...

Averages are good for somebody taking an overall statistical view. If you know the average length of survival time for a previous 10,000 Stage IV cancer patients, you can make a very good prediction for the next 10,000. But such numbers don't mean much from the individual's point of view. A colleague of my cardiologist, another cardiologist, was dead within days of being diagnosed with pancreatic cancer. Then there are people like Herman Cain and the woman I saw on TV recently, who are still steaming along decades after being told they had very little time. Just live.

Cathy Crea said...

A couple of thoughts of a practical nature:

1. At my college, students with major medical events during the semester can appeal for partial (or full?) tuition reimbursement. You may be able to do the same. This might help you make your decision, knowing you won't be out the full $5000 if you get called in for another round of chemo.

2. Subbing can be its own brand of hell, but if you pick maybe one school building to sub at, you can build those relationships and after they get to know you, you'll actually be able to do some real teaching. Plus, subbing is very flexible, so if there are days you don't feel up to it, you can say no.

I can help you come up with a couple of lesson plans you can use to pull out of your pocket that are valuable, engaging, and handy in case whatever the teacher gave you is not working, or in case--as happened to me once or twice--the teacher doesn't give you anything. I've got a great one off the top of my head.

On a personal note, I think of you often and send mental waves of support. This piece of adjusting to Dr. Straightshooter's assessment is very difficult, but you have faced things thus far with wisdom and grace, and I have confidence you will continue to do so.

Kelly McCullough said...

Hard to know what to say that will be of any help here. Sending hugs and still listening because that's really all I've got.

Anne-Marie said...

I am glad to hear you have a Dr. you feel confident in. Providing you with information that helps you make your decisions it what a truly good Dr. should be doing.

Wendy said...

Information is power - glad you found Dr. Straightshooter.

More love!

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