Day 706: human AND dancer?

10 weeks since my last post. I may do better as a writer to be more disciplined at this, but honestly, I just wait until the impetus to write starts bubbling up. And it's been bubbling for the past few weeks- and after so many things happening, I finally have a moment to sit and write it out. My friend today asked what it would be about. I answered: "I don't know yet" because I don't. This blog has been a discovery for me, nearly every time I sit down to type, I have almost no idea what I will write about, and I make discoveries about myself and my life as I write. So here goes.

[edit: Upon reflection/re-read, this is serving as a catch-up post for people interested in what I've been up to, and not necessarily all of what I've been thinking about, which is usually somewhere between crying over beauty or being crippled by existential terror. But that's always sort of thrown in I guess. There's more and more still waiting in me, but I think it shall wait for its own blog post.]

I'm sitting in an unfamiliar kitchen in Ipswich MA where I am dog/house sitting. The pooch is an adorable, loving 11 year-old chocolate lab mix, and we're best buddies now (it's my second day). I may not need a shower as I've been licked head to toe by this baby.

I'm thinking over what has been crawling through my mind these past few months- and much has happened: good and bad things; and as always, Life showing itself truthfully. I 95% moved out of my old apartment and into my new apartment this past weekend. I can't believe I've moved so many times, and each time it is so similar; too similar. First, moving is sooo fun. In addition to being anxiety-ridden and stressful, I am seemingly always the last person to leave an apartment (read: I am responsible for cleaning the entire thing). Thankfully I still have another weekend to move the rest of my stuff (HOW SO MUCH STUFF?! HOW) and to clean it all. I've been fortunate to have time to move; the usual move out/in and clean all in one day is a nightmare, and I'm pretty sure everyone has experienced this at some point.

Good news on the goal-front! I have traveled a bit. I am making it happen, sort of. I haven't mentioned it yet, but I went to Southern CA back in April, and though it was the COLDEST WEEK in recent memory (WHY, HOW), it was more cleansing than I could even understand until I got back to MA. I've not traveled too much in my life yet, but that trip- though I spent many (too) many hours in my rental car driving all across the (Southern CA) world- it was healing and just what I needed. It was a difficult winter (yes, didn't we all love it), and I was seriously getting ready to move out to CA sight-unseen, but decided to take this trip first. I now don't have the urge to move out there, at least not at the moment, but just going on a vacation (my first personal vacation! ever!) cleaned me out and refreshed me in a way I didn't know it could.

I also just got back from SCOTLAND. Yes. International traveler, me. I went to Edinburgh for the Fringe Festival and it was divine and difficult, both of which I was anticipating. Edinburgh is a very walkable city, but it is also mostly hills. This was tough for my body, and though it got easier every day, it was still pretty rough and I was almost always tired. It was also quite chilly (though apparently the week I was there we had some of the warmest days in recent memory... I guess good karma from my iceberg CA trip?) and I am a perpetually cold being now, even when it's 70.

I first went to the Fringe Fest in Edinburgh back in 2011, and I saw some work there that completely changed my life. It inspired me to start my own theatre company here in MA, and I've been longing to return ever since (on a side note: a few months before I was diagnosed, I was planning to go back that summer with my sister). So in going back, of course I wondered if I would see anything that would break me like my first time in Edinburgh.

...It happened. It took until my second-to-last day there, but it happened. I almost missed the show because while standing in queue, I suddenly got a massive coughing attack (oh yeah, I got a great chest cold about mid-way through the week. Nights full of feverish delirium. Sweet) and had to step out of line while they let everyone else in. At the literal last second, I was finally able to compose myself and climbed to the very back of the stadium seating (which actually turned out quite nicely: I was able to see the entire stage, and being a shorter person, this is not usually the case.) The show was a physical theatre piece called Institute by a UK company called Gecko. It was absolutely brilliant. I could attempt to talk about it for a while, but honestly, physical theatre and dance is always it's own, usually wordless language. I would find myself crying, not even entirely sure why.

After it was over, I stumbled out of the venue, put on my sunglasses and tried not to burst out sobbing on my way back to my flat (thankfully not a far walk home). I couldn't speak. And when I finally could, it was tearfully to two girls who were in my flat, as tried to explain what I had just witnessed. They had to leave for something else, and I went to my room and lay on my bed and cried for a while. Seriously, just laid there and cried. I wasn't trying to "process it" in any real way, but rather just let the experience wash over me. And it still does.

The next day, my last day there, I went back to the venue after the show got out because I heard that the company actually comes out afterwards to chat with people, which is incredibly generous especially after giving everything on the stage! It was amazing to talk with them about their process and their different paths to finding themselves in a physical theatre company. They asked where we "went"- what the show was to us. I spoke a little bit about spending a lot of time in hospitals (there was definitely imagery resonating there), and how we all try to care for each other even though we are failing at it all the time. I was trying to not cry. One of them asked me if I was a dancer, and I sort of stuttered and managed to burp out something about missing my chance. One of the company members points to one of the quieter members and says "Chris was a firefighter in California."

For some reason this stuck with me. I have spent so many hours and days being so sad and pissed off about how my "new" body fails and constantly disappoints me. From lack of mobility for so long, my muscles atrophied, and it's taking SO MUCH LONGER to get back than I could have ever imagined. And my flexibility is so poor that usually when I try to stretch it just becomes a crying session. But seeing this company's work, and in talking with them after their show-- I have a renewed sense of vigor to build my body again. For the first time in a long long time, I feel like I actually might be capable of getting to where I want to go. I know that it will take a lot of work. Probably more than I even realize at this moment. But I want it so badly.

Before I got sick, the only real option that I was considering for continuing my education into grad school was physical theatre and/or clown school. People would chuckle after I told them, then I'd usually have to say, "no, but seriously." I don't know necessarily that clown school is in the cards for the future, but I feel this urgency--a vitality to jump start and get this body to a different place. I'm promising myself that the next six months are going to be dedicated to self-care in the form of HEALTH: building muscle and flexibility. Let's do this. I've always felt that I could have been a dancer. And now: who knows? Maybe I will be one.

Day 303: 10 months, and all the things

Hello and welcome to 10 months since transplant.

I can hardly believe I'm even typing that number: over 300 days. 10 months. Ten months. 2 more months will be a year.

Fortunately, I haven't been writing as much here because I've been busy living my life. Again, finally, finally. I am not home-free yet: I can't start work until October; I'm still on anti-rejection meds, prednisone and tons of antibiotics, and even come one year on Sept 26 it's another 4 years until I am considered "cured" of Leukemia. But I am now taking stock of my life as it is right now-- and compared to what I was four months ago, it's hard to believe that things have changed so much. I am here.

I have started going out to public spaces (if they aren't too crowded), cafes, restaurants, friends' houses, I shop for my own groceries. I have been frequenting my favorite bakery, and though I am sort-of cheating when I order their amazing smoked salmon sandwich (it has raw things on it, which is not exactly "kosher" for me right now), it is so worth it. (don't worry mom, I've only gotten it a couple times; I think my odds are still good of not getting a bad sprout)

My taste is back to normal (though there are some things that I do not like anymore!? how strange), the body aches are diminishing (great thanks to my massage therapist, Bambi. And prednisone.) My hair is coming in, very very curly, like never before! Cue the BRILLO PAD

That photo is from a couple weeks ago. Two days ago I shaved it all off again, in hopes that it will start to thicken up more. Here's one from today. buh-bye baby fuzz, GO ARMY

In other news, my theatre company: the 5th wall, put up an original production last weekend: The Quiet Room. (aaand, shameless plug for our website. For pics and more info about us: the5thwall.org) We wrote the script over a few months at the beginning of the year, auditioned and cast the show with both known and new faces, and all beautiful minds, and rehearsed hard for two months. It was an amazing experience the whole way through: the ups, the downs, the grueling heat, the extreme fears and anxieties, the unsurmountable joy… And being a part of this show was the most normal life activity for me since I was diagnosed. When I am at rehearsals, I feel alive. Completely in my element. I truly forget all this shit and just do what I do best (sometimes to the detriment of my health; which is why I love my friends even more for always pointing me to my water bottle). I feel very lucky to have found something that I am both good at and also enjoy; and can also afford to do for the time being. It is not a perfect model: there are most definitely nights when I feel so lost, like the path is blocked: creatively or physically or emotionally. But it is the striving through these crazy obstacles that make it important, make it what I love. A cliche: but it is a labor of love. Through and through. And the messy nature of theatre is one of its most beautiful qualities. It gets directly at the immediate heart of life, relationships, the self, the other, love, struggle, trauma, perseverance, love, love, LOVE-- even in its very method of creation. Abraham Heschel said in an interview a few weeks before his parting from this world: "Above all, remember that you must build your life as if it were a work of art." There are a couple of interpretations of this, but the one I find to be most meaningful is this: build your life in the same way that you build a work of art: Through the mess and confusion, continue to reach for clarity, beauty, honesty, truth.

This show and this company is life-affirming for me. It reminds me why I want to get through this...tough patch. Not for any one person, not for a single one thing or one relationship, but because there is clarity, beauty, honesty and truth. I have to live for that, for myself, and for everything that is bigger than me. This is something that I have been struggling with; in spite of how strong I felt for so many months after being diagnosed. I am learning about myself and how I deal with things and people and life struggles. Trauma does that, I think. It forces you to deal with things immediately, and then you are left thinking about yourself in relation to it in the aftermath. I have learned that I am a fire-fighter. Trauma hits, and I go into survival mode: Get it done. I make jokes to get myself through, I do whatever it takes to get through. And then, as I have seen and experienced and am now realizing: something happens when the trauma is long-term. I start to lose my footing. I start to lose my drive. I guess probably anyone would, I don't really fault myself for this. And of course, my situation is extremely concentrated: spending hours alone, often in physical and/or emotional agony over the winter is not many people's experience. However, somehow I think this can be invisible-- even in people we see every day.

I am thinking a lot about how I relate to people, the mechanisms that I use to deal with things, especially to protect myself. It would be foolish for me to believe that I don't use mechanisms; we all use them-- learned from those who came before us, or in reaction to those who came before us. No one is exempt. In a way, it allows me to be more forgiving of myself and of others, for all of the folly and helpless failings. In the words of a character from The Quiet Room: "We find ourselves here, among them all, these unsolvable puzzles of things and people, just being." Just being. Trying to protect ourselves, experimenting with life and choices and our bodies and minds and other people and experiencing the vast spectrum and gamut of human emotions all at the same time, all of the time. It's messy. It's theatre.


I will take the sun in my mouth
and leap into the ripe air
Alive
with closed eyes
to dash against darkness.

-- ee cummings

Day 145: tv marathons and/or self-care

Rie and I have had our work cut out for us. We've been charged with watching as many crappy movies and food network shows as possible. Boy are we succeeding, big time.

Other than that, life is still pretty slow. And no matter what I do I always have dark circles around my eyes. But I've been doing a lot better mentally, which is wonderful. I think the combination of coming down off the steroids (remember when I said it didn't seem to be having any side-effects? ha. ha.) and upping the Remeron (a drug that I'm taking for a few different reasons, but one use is for anti-depression) helped level out my mood swings and general sad feeling. Also, the days are getting longer, and I've been exercising daily on our new exercise bike. In addition, Marie and I are registering for a Young Adult Cancer Conference at the end of March at Dana Farber. So, that should be interesting/insightful/encouraging/hopefully.

As far as updates go, at my next appointment (Feb 28), it will have been my first whole month without any trips to the hospital! (so here's to hoping that I don't get sick before then!) My doctor said that at our next appointment we may be able to start tapering my anti-rejection meds. This means we'll begin to allow the transplanted immune system work on its own in my body, hoping that we've given it enough time to become adjusted to its new home. We'll lower it just a little at first, and go from there. What we'll be looking for is any signs of GvH (graft-versus-host disease: the immune system attacking my body), which can show itself in various ways. Strangely enough, studies seem to show that having a little GvH may actually be a good thing; that cases in which the patient presented signs of GvH seemed to be more successful than those without. It shows that the immune system is strong and fighting, and cancer is less likely to return.

So, I have mixed emotions about it. We don't want too much GvH, because 1) it can be very dangerous (attacking vital organs), and 2) it can mean the mismatched transplant is a failure. I don't even know what we'd do then... (The HLA match that the registry found for me was a 5/6 match, so technically 'mismatched'- but my doctors felt it was enough to proceed with the transplant) I'm trying to not get too worried about it, but I am nervous because it is something that I cannot control in the least. Most people have a some understanding of how their immune system works: the ways in which they get sick, how long they're usually sick for, how to treat themselves. I have no idea about my immune system. I just hope it doesn't start attacking the rest of my body. I don't know if I'll be more sickly now than I ever was before I was diagnosed. It's likely that I'll need to take some form of anti-rejection drug for the rest of my life. A lot will depend on how I react to tapering the drugs. If GvH flares up, we'll have to raise the anti-rejection prescription again and, I guess, wait longer.

I've been thinking about the year that led up to my diagnosis. I got sick a few times that year, and I mean, really sick. Sick in ways I had never experienced: full body aches so terrible that I had to slowly crawl across the floor to my bed and sleep for days. I remember at the time thinking it was strange, and I even talked to my roommates about how my symptoms were so much more intense than I had ever experienced, that something was different, off. Of course, I never did anything about it. But it was my body telling me that there was something wrong. I think I knew inside that there was something off. When I was diagnosed, the doctor told me it was likely that I had had leukemia for a year already. I don't think it would have changed the outcome had it been discovered earlier: because of the type of leukemia, I would have needed a stem cell transplant anyway--but still I wonder. So I encourage all of you to take notice of yourself, and listen to your body. I'm not encouraging hypochondria, just rational and important caring of ones' self. If something seems not quite right: a lump here, persistent rash there, you're getting sick more often or noticeably more severely, night sweats (especially night sweats! That is, waking up so drenched in sweat that you have to change your clothes and/or sheets. It can be a sign of a serious underlying disease)… get it checked out. Get a blood test. A chance blood test is what saved me.

Well, back to the Chopped! marathon for me...

Here's a picture of Marie crying at a commercial. She's emotional.