Posted by: julia
on Feb 10, 2017
I’ve been thinking a lot about Spoon Theory lately, which made me realize I’d never talked about it here on Parentheticals. For those who don’t know, Spoon Theory is a metaphor used by the disability community to explain what it feels like to have a limited amount of energy available for basic tasks of daily living and how it is more difficult to replace or regenerate that energy if one is dealing with a disability or chronic illness than it would be for others. (A “spoon” in this metaphorical sense just refers to “a unit of energy”, not an actual eating implement.) People use this metaphor to express various ideas about having energy, running out of energy, safeguarding one’s energy, spending one’s energy, etc. So one might say, for example, “I wish I could go out to that event tonight, but I am all out of spoons.” Or, “It took almost all my spoons just to shower and get dressed today.” Or, “I used all my spoons up yesterday and I don’t have enough back to do that today.”
When I was going through the active phase of my cancer treatments, with all the chemotherapy and surgeries, I was definitely much more spoon-deprived than I was used to being. Of course it made sense that all the difficult physical demands of killing cancer cells and re-sculpting my body would take a lot of spoons, and it was not surprising that I found I needed to hoard my spoons and spend them only (or at least mostly) on self-care and recovery activities (however broadly or personally defined those activities may have been in my specific case).
But then I got better, and after a while the physical demands eased and I found my spoons didn’t run out so fast. I found I could go back to spending my spoons on activities and projects besides self-care and daily living, like I had been used to doing. So of course, I did. And I’m happy to report that physically, my stamina and spoon supply seems to be nearly back to normal. (If I had to estimate, I’d say I’m at about 85-90%.)
Posted by: julia
on Jan 28, 2017
I’m a few days late getting this traditional birthday blog post up this year, because there was a lot going on for my birthday and then I got sick (which I refuse to take as an indication that I overdid it around the birthday shenanigans...it is after all seasonally appropriate and I have been around a lot of people). Today I’m finally feeling better though and ready to contemplate this dual anniversary as I do every year and see what it feels like this time.
For those just now coming to the party, my birthday is also the day I got diagnosed with cancer...the first time, back when I was 23. That makes this year my 25th anniversary of the day my relationship with my body and my mortality abruptly changed. 25 years is a nice round number and worthy of celebration, though it would feel nicer (and more victorious) if there hadn’t also been this new diagnosis and cancer saga part 2 that I have been dealing with for the past year-plus. It’s become interestingly complicated to do this yearly philosophizing now that there are two cancer-versaries to contemplate, but I still like the dramatic dichotomy that this day of transitions from one state to another (from unborn to born, from healthy to ill) presents.
I do still feel a sense of victory, of having made it this far after the initial shock and upset of that first diagnosis. But that sense of victory is tempered now with the reality that life is complicated and the lesson that victory often comes at a cost (which sometimes takes a lot longer than expected to manifest). I can no longer see my life as divided into only three phases, pre-cancer, cancer treatments and post-cancer survivorship—my survivorship status is now no longer something I can confidently assume will not change, since it already has changed once, from cancer survivor back to cancer patient and then back to survivor again. Don’t get me wrong, I’m humongously grateful for and pleased at being back in the survivor identity after a tough second go-round, but the very fact that the pendulum has swung back and forth between having and surviving cancer an additional time makes me have to acknowledge that it could certainly do so again. (In fact, it is more likely to do so again than it once was.) I have to constantly be able to hold two possibilities in my head and heart: on the one hand, that I am free, that I have fought the good fight and triumphed and cancer has once again vanished from my body, never to return because we have salted the earth quite thoroughly (and will continue to for years to come, just in case); and yet on the other hand, that treatments for cancer can sometimes cause cancer, as they did in my case, and that my body seems to be a fertile ground for cancer (as evidenced by it popping up at least twice now that I know of), so even though we have done all we can to prevent recurrence, I cannot be certain that it won’t happen. Holding two opposite things simultaneously and being comfortable in that “gray area” of uncertainty is something I learned to do back in the first go-round with cancer, but now I’ve had a chance to repeat the lesson and it is even more nuanced and complicated. I would say that the ability to live in the gray is one of the hallmarks of maturity, so I guess I would also say “yay me” that I have made it far and long enough to even mature.
Posted by: julia
on Nov 16, 2016
A year ago today I had my first breast surgery (a lumpectomy and reduction). A week ago today I had what I fervently hope is my last breast surgery (tweaks to finish the DIEP flap reconstruction I had back in June). So I have been this new, smaller-breasted person for a whole year now. It still feels strange and unreal, though I’m finally getting more used to it. Being done with the reconstruction also brings with it a mixed set of feelings: on the one hand, “yay, that’s it, I’m done!”, where I’m happy to finally be through all the trials and tribulations and relieved to be relatively pleased with the results; and yet on the other hand, I also am feeling “oh, that’s it, I’m done?”, where I’m realizing that the form I’ve got now is what I’m going to have for—God willing and the creek don’t rise—the rest of my life. And it isn’t perfect, as it never is, but whatever my minor disappointments, now I must begin the journey back to body acceptance and self-appreciation all over again. Having done body acceptance work slowly but surely for decades already, it’s a little disheartening to have to do it again (and so relatively quickly). Do it I shall, with as much focus on the silver linings and bright sides as I can manage, but today is an anniversary where I mourn, just a little, the way things used to be back before I was a “modified” human.
The other thing that I’ve been mulling over the last few weeks (in between all the election hoo ha and the emotional rollercoaster that has created, which will have to be another post), is the “now what” feeling of existential angst that I mentioned in the last post. Other than the next 5-10 years of prophylactic hormone therapy, I am officially done with the active phase of my treatment. I'm excited about that, oh hell yes I am...but I am also feeling a little discombobulated and lost. I feel like a wild animal in a catch and release program—I got caught, I thought I was going to die, but now here I am thrust back out into the place where I started (more or less) and not sure about how safe it really is anymore or whether I truly belong there. Don’t get me wrong, I vastly prefer it out here to back in captivity, but I’m uncertain about what to do and where to go next. I guess I’m just going to have to put my focus on the first half of the “patient patient” moniker while I move away from the second, and see what this crazy, complicated, contradictory, unpredictable, and ever-interesting universe throws my way next.