I know it’s been awhile. This is actually good, because it means there hasn’t been much news for me to share. I’ve been in the hospital for the past few weeks waiting for my immune system to recover and, for the most part, have not been too sick. Tomorrow I will be going under for my third bone marrow aspirate. By this weekend I will be discharged from the hospital (for about a week) and by next week I will know whether this round of chemo worked. If it did, I will be back at CHO in two weeks for a bone marrow transplant. If not, I will be on to round 3 and a new level of desperation.
That is really all there is to say about my bones right now so instead let’s talk about me for awhile. I think I need to dispel a little misconception that I am bored here in the hospital. I actually love CHO because it is the perfect land for me to wreak havoc in a safe, contained cancer way. So far this has included covering the awful border in my pediatric hospital room with construction paper and string lights, negotiating for the corner penthouse suite with views of Oakland/Berkeley/San Francisco (golden gate included)/the bay, running around the one hallway in which I am allowed toting my absurd IV pole, instigating nurse gossip, having so many visitors that the people at the front desk know my name and are exasperated with me, and befriending numerous people who are paid to be nice to me anyway.
Since I haven’t had a serious infection in two weeks, I have been allowed out of my room and am even dabbling in the art of making Cancer Friends. I also spend my time pounding on the keyboard CHO graciously found for me, playing guitar hero, painting pretty pictures (sometimes even without numbers!) and scheming with my nurses to get something good out of the whole cancer thing – I am too old for a Make A Wish. Seriously I literally have cancer and no one will even take me on an extravagant Disney trip because I am 19 (if we’re being real though I would totally wish for a trip to Antarctica with Joe Biden – just throwing that out there).
Anyway, if you were wondering what I’ve been doing it’s generally been that. Except I also have been reading and writing a lot (figured it was my time to become culturally literate). I now have strong feelings about things such as Taylor Swift capitalizing on “feminism” while simultaneously failing to understand (or maybe just care about) its basic tenets AND making a very problematic music video in “Africa” while posing as a romanticized colonist.
Mostly, though, I read and write about death. I know that’s a little less fun but has actually become incredibly light for me. Having an illness that frequently results in death (I’m referring to my subtype of AML here, not AML in general) has been an eye opening experience for me (obviously). I have spent a significant amount of time deconstructing what it is that stresses me out about dying and how to address that. I have thought about the ways I have lived my life and thankfully do not have too many regrets. I have made a point of asking my friends and family to share pictures, memories, and thoughts with me. I have also felt, throughout this process, grateful both for the love I have been shown as a cancer patient and for my time on this Earth. This is not the way I expected to feel about death, but somehow it is much more about love than fear for me.
Dr. Oliver Sacks died a few days ago. He was a prolific neurologist, professor, and writer. Among his many pieces was a recent op-ed in the NYT which addressed his thoughts upon being diagnosed with terminal cancer. While Oliver died at the age of 82 and I have so far only squeaked out 19 years on this planet, I was surprised to read his op-ed and feel like his thoughts were remarkably in parallel with mine. If you are interested, here is a link: http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=0. In addition to my thoughts about death, Dr. Sacks’ writing about life struck me – like him, I feel acutely, intentionally, almost desperately alive. The things that matter to me – my relationships with my friends, family, and myself – they matter even more in the face of death. My life matters more. Either way, I am learning to spend my time in an intentionally productive, joyful way. So the moral of this story is that I am still out here fighting the fight, hoping that modern medicine will grant me many more years of life, feeling grateful that I will live them even more intentionally than before, not so afraid of the alternative anymore. I’m feeling good.