Saturday 31 January 2015

I am...

Lately, I’ve started being able to feel my tumor. I gather that the liver itself does not have pain sensors, but that the membrane around it does (I certainly felt it during the biopsy…), and it’s starting rub against my ribs. I can see it now, too.


We’ve entered a new level of terror, here. But as of this particular moment, I’m not feeling afraid, so that can wait for another time.


During a workout this week I realized that it is becoming uncomfortable to use my core muscles because it makes the thing rub more. Soon, I will likely struggle to participate in CrossFit in the way I am accustomed to, and perhaps even at all. This realization made me panic in a much different way; feeling my tumor makes me more aware of my mortality, in general, but now I’m realizing that I don’t have to die to have things I love taken away from me. If you follow my posts, you know how important continuing CrossFit is to my mental state. What if I can’t go anymore? So much of my identity is intrinsically linked to Jen, the CrossFitter, and what I my body is capable of that it couldn’t do before I defined myself as a CrossFitter..


Except it isn’t capable of those things anymore. So, who am I, now?


In talking with coach Jen, she sees this from time to time; a person discovers CrossFit, becomes incredibly engaged in the community, is incredibly motivated, sets and meets some goals, and generally improves everything in their lives. But as with any sport, injuries can happen. Now suddenly life itself seems overturned. They often feel like they can’t work out while injured, and so they stop coming to the gym and withdraw from the community. If they haven’t got anything else in their lives to focus that energy, they become demotivated and even depressed.


How best to avoid that fate?


I’ve reinvented my own identity before. Not in the way that a Disney child star repackages their adult image for others, but the way that I see myself. As a kid, I defined myself only academically; I was the smart kid who was good at math. When I started CrossFit, making changes to my diet and lifestyle and building muscle, suddenly there were things other than math that I could do: I could deadlift 275 pounds, squat 200, do a strict pullup. I started to define myself as an athlete, or at least someone who was fit enough to be one, if I chose.


But what I can do has changed. If the ability to do those lifts is no longer part of my identity, is it time to repackage my self-image again? My current “job” is Cancer Patient, and while my cancer experience will always be a part of my identity, I refuse to define myself in that way.


As Dr. Jordan reminded me when I had a meltdown in her office, I can still scale movements and weights even further than I already have (if the zoomers can do it, I’m not sure what I’m whining about….), and there are plenty of other activities I can enjoy to keep moving (I’ve recently started attending Tai Chi. Love it. That’s another post). As I talked it over with coach Jen the next day, it occurred to me that what I am hasn’t changed, just what I can do. This is perhaps obvious on the surface, but what it means is that I don’t need to redefine who I am, I just need to start using adjectives more creatively.


We do this all the time when we write resumes for a career change, massaging the standing description of ourselves to match the job description. For instance, what I do currently is work as a fish population biologist. What I am, though, is a good problem solver (I do lots of maths), and that would still be the case in any job. I can’t lift as much anymore, but I am not suddenly unfit or unhealthy (cancer notwithstanding). I can’t do intense workouts, but I can still be the person who comes in anyway (sorry about the outfit there) to do arm circles from the bench and say hullo to everyone. So as I redefine myself again I’m thinking a little differently this time, and defining myself not by the things I can do in the gym, but by my commitment to be there as often as I can, to keep moving as much as I can, and to continue living all aspects of this healthy lifestyle that I’ve built for myself (nutrition, spiritual/mental wellness, etc.), not just the physical fitness part.

That said, I sure as hell intend to deadlift 300 pounds some day :)

Friday 16 January 2015

Dropping the bomb

On Wednesday I found out that the chemo I’ve been on has stopped working in dramatic fashion; the tumors in my liver haven’t just stopped shrinking, they’re growing again, and are headed back to where we started in the Fall. My Oncologist believes that my cancer has mutated at least once, possibly twice. My cervical tumor was obliterated by the first drug combo (cisplatin/etoposide) but the liver spots didn’t change at all, suggesting possible mutation. The second combo did nothing whatsoever (cyclophosphamide, vincristine, doxrubicin). The third combo, that I’ve been on since September, was working really well for four rounds, but has since stopped. It appears to have cleared up the first mutation, making all sorts of space for the second mutation, which is now resistant to 9 chemo drugs and making its presence known..


My cancer is highly evolved, although not in a very intelligent sense or else it would realize that if I’m dead, it’s dead. Not thinking this through very well, are you cancer…..


So, I’m currently waiting for a call from Princess Margaret’s clinical trial group. My Oncologist believes I can get into a clinical trial for an immunological therapy; one of the newfangled treatments that are in vogue these days. If I understand correctly, the treatment would inject protein antibodies that target receptors on the tumor and basically act as a beacon that direct the immune system to the tumor, which otherwise knows how to hide. I think it will be something like this. There are other similar treatments where you inject a virus that has been trained to “know” your tumor (I think...something like that…) This would be a phase one trial, meaning they are still establishing safe dose limits, dose schedules, and side effects, which is obviously less than ideal. In this scenario, I might either get too small a dose, or too large. If I can’t get into this trial, I do not know what I will do next; this weekend is for research.


Tonight I went for a workout, and I had a terrific meltdown afterward that I had half expected. If I’m honest, I went deliberately to trigger those post workout meltdowns that I know to be so cathartic.


I made a bit of a scene. There was sobbing, a lot of screaming and, because I took rather a long time and finished the workout last, rather a lot of witnesses who were obliged to stand there awkwardly waiting for me finish. I didn’t notice a single one of them. When I became aware of the rest of the room again, there was someone sitting next to me, with a hand to hold (which was precisely the appropriate response, by the way)...my gym family is pretty great.


I was expecting the meltdown. I welcomed it, and the calm that follows a good sob. I wasn’t prepared for the reaction of others when I shared the bad news. As a consequence I’ve adopted the self-preservation technique of dropping the bomb: “My chemo isn’t working anymore, it’s growing again..” and then I run away like a child. I can’t handle watching them realize what the words mean….that my oncologist’s “cupboard” of options is getting bare.

But, I have an oncologist who hasn’t given up on me and seems determined to succeed. I’ve got my fingers crossed for the immunotherapy, which would be badass; I haven’t given up on science just yet. I haven’t given up on myself either, in case you were worried :)