Day 494: are we human or are we dancer?

I’m sitting and looking over the perfect white billows of comforter onto a completely white window. I am writing because I’m feeling snarky today. Something inside me is starting to burst, or bloom, or explode; pick your metaphor. I’m trying to find out what comes next in this life. I feel a sense of irrepressible energy and yet at the same time some kind of gross hindrance. I tell myself I am getting better every day, though the augmentation is sometimes infinitesimally minute.  A lot of the problem is physical. I feel trapped in a body that doesn’t work well. In a small way, I know, I am beginning to understand a bit of what it’s like to live with disability, or better put: I have begun to understand the true feeling of limitation. I have felt the physical effects (literal inability to do things) as well as the psychological distress of watching your body shrivel. The trauma of enduring a life-threatening disease and an almost equally life-threatening treatment, followed by a year of extreme muscle and bone density loss, GvHD and transplant complications, lung damage, and at times a stagnant brain...it’s aged me. I feel I have the body of an 80 year-old. This must be what aging feels like, but on an accelerated scale. This is life, folks. And I’m especially talking to you, Bekah. This is life. Bodies fail. I have hopes for where I will be a year from now, but I don’t actually know what will happen. People keep saying that I’ll get back. I'll get back to where I was before. No problem no question. But I don’t know that it will happen. I have to accept and love my life the whole way through it; or else I may come to the end and find I was waiting for something that didn’t exist. So I have decided to love even this obstinate and foreign time of my life. I must practice Love. I must practice Love. I must grasp today, and not wait for tomorrow or some body or life that I hope will fall into my lap.

I am managing to type right now; my hand muscle spasms have taken a short respite, perhaps to journey to other muscles that enjoy hosting a good seizure: neck and throat, both legs, abdomen and lower back, pick your favorite. It’s painful. My hands are always slightly swollen these days—in addition to the muscle spasms that make it impossible to do much of anything—so even when they’re not spazzing out, holding or opening things is difficult. I can’t help shovel snow because I have no muscles, and the bitties I do have start cramping if I exert them or stretch them too much/at all. My arms are essentially 2ft matchsticks. And considering my high risk for osteoporosis, this couldn’t be more true.

But even with these new spastic developments (which we can’t seem to find a cause or cure for), I’m still endeavoring to see the world anew. #2015yearofhealth y’all. And I’m referring to whole person health, not just healthy eating or weight. And I would like to take a quick moment to say that I am actually trying to gain weight this year. I’d love it if healthy eating wasn’t always about losing weight. Pinterest can’t help me at all because everything #healthy is low-cal or #bikinibodbound. Maybe people think I’m lucky? Doesn’t everyone just wish they were toooooo skinny? Bah. I just want to be healthy. I want to gain muscle and flexibility and happiness this year. I want to expand my circle of compassion, to revolutionize my idea of Love over and over and over again. These are my goals. For this year, for life.

Every day is a choice. And if I see it as a choice; or at least tell myself it is a choice rather than a chore; perhaps after time I will start to really believe it. I will practice loving the world. I will practice loving myself. Days can go by so quickly without any real accomplishment. And even accomplishments (I did laundry! I did dishes! I took all my pills at the right time! I ate three meals!) can come with with the feeling of it still not being enough. Who rejoices over managing to eat three meals? Who rejoices over laundry? This girl. Today she does, at least. Today, there is enough Love. Today there is enough energy and peace and compassion. Today I can surpass this fragile stupid body. Today I can celebrate this fragile stupid body. Today I will find strength in weakness. The Source is full, its waters are ever-flowing. This is the endless Ocean. Today, we are DANCER. I will raise my stupid matchsticks in the air and stomp my little 80-year-old feet, metaphorically.

The Source is full,

its waters are ever-flowing;

Do not grieve,

drink your fill!

Don’t think it will ever run dry—

This is the endless Ocean!

So what the hell, I’ll put on the Killers and bomb the f@$% out. I’ll read Rumi and weep my endless Ocean of dry tears. And then, I will love the world. This is the endless Ocean. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself.

Peace and joy, kittens. Stay warm, stay happy. Stay Dancer.

Everything you see has its roots

in the unseen world.

The forms may change,

yet the essence remains the same.

Every wondrous sight will vanish,

every sweet word will fade.

But do not be disheartened,

The Source they come from is eternal—

growing, branching out,

giving new life and new joy.

Why do you weep?—

That Source is within you,

and this whole world

is springing up from it.

The Source is full,

its waters are ever-flowing;

Do not grieve,

drink your fill!

Don’t think it will ever run dry—

This is the endless Ocean!

From the moment you came into this world,

a ladder was placed in front of you

that you might transcend it.

From earth, you became plant,

from plant you became animal.

Afterwards you became a human being,

endowed with knowledge, intellect and faith.

Behold the body, born of dust—

how perfect it has become!

Why should you fear its end?

When were you ever made less by dying?

When you pass beyond this human form,

no doubt you will become an angel

and soar through the heavens!

But don’t stop there.

Even heavenly bodies grow old.

Pass again from the heavenly realm

and plunge into the ocean of Consciousness.

Let the drop of water that is you

become a hundred mighty seas.

But do not think that the drop alone

becomes the Ocean—

the Ocean, too, becomes the drop!

-Rumi

Day 365: to the girl in the waiting room

Twelve days after my transplant, after I got out of the hospital and was in for my first weekly check-up, I was sitting in the 8th floor waiting room, infusion side. My parents and sister were there. A lean and pretty girl was sitting reading across from us. She had a short dark pixie cut and adorable clothes, and honestly except for her bracelet I don't think I would have known she was a patient. She sent her husband out to get some Starbucks, and I caught the front of her book: Anne Lamott. I was actually feeling pretty good that day, considering. I guess I was just so happy to be finally out of the white box that I'd spent the past two months in, and my throat sores had subsided considerably. I told her I loved Anne Lamott-- and we got to chatting. She told me she was in for her year check-up, post-transplant. I couldn't believe my eyes. She looked so good. She told me about her class (she's a middle school teacher) and that sometimes the kids ask her about the scars on her chest. She laughed. She told me that I looked pretty good for being day 12; that she was still in an Ativan haze around then. She said "It gets a lot worse before it gets better. But it is so worth it. Keep going, soul sister."

And again, I am reminded of Rilke. How could she have possibly known? Let everything happen to you: beauty and terror. Just keep going. 

It meant so much to me (more than I even knew at the time) to see her, looking so healthy and happy and strong, a year away from where I was. At the time, I couldn't imagine myself being in her place. I couldn't imagine it. I couldn't see outside of where I was. I was still so blown over, so caught up in dealing with symptoms of this deadly treatment that I couldn't imagine a time when cancer wouldn't be my life. I hadn't even really started the arduous journey of dealing with everything that cancer disrupts or takes away. I felt it's immediate stoppage, of course: I was ripped out of my life and put on a single-lane fast track labeled in big letters CANCER. It changed everything. And then later, when the solitude and mental exhaustion took its hold, I couldn’t make jokes anymore and winter and depression drove me close to losing my mind or taking my own life--I couldn't see outside of it. There were nights I didn't think I would make it, because I would cry myself to death. 

And yet. I am here. Somehow I have survived this long, trudged this far into the journey. I have a lot of people to thank for that. Some people would say I'm so close that I might as well finish this. I can hardly grasp that I am one year out. It doesn't feel like something that will end. It feels like it can’t end. And in some ways, I don't want it to--what I mean is, some of the changes I don't want to lose sight of. I don’t want to forget how I feel about living now, right now at least. After really experiencing fragility, and beauty and terror all together...it makes me want to live differently. It’s a part of me, and a part of my story now, and I am different. I knew this would change me; and I’m still learning what that means, and figuring out who I am now. 

Today I’m trying to claim that bravery again, finding ways to celebrate even if I don’t feel like doing it 100%. Finding way to be thankful, and trying to thank the people responsible for my still being here (the list is long). Because cancer has changed me. For one, it makes me not want to be afraid of dumb shit that’s not scary. Life is so temporary. Ask for his number! Fly to Edinburgh! Start a new job! Open a café! Apologize! Forgive! Take risks! Ask questions! Do things! Choose Freedom! Choose Love!

The effects of cancer have outlived the cancer. And that is a mixed bag, I must say. I am not whole yet. There are effects that hurt; really hurt. I am still climbing out of this emotional wreckage, let alone the physical wreckage that is my now weird body. But I am--today, in this moment--trying to focus on the constructive effects in my life: the ways in which I am changed for the better. I am lucky to be able to do that right now, and perhaps tomorrow will not even look quite as bright. But life won’t stop being hard after this is over. Challenges will always arise, and life will seep down to the bare mundane tasks if I let it. I need to keep finding ways to live and love better. I have to trust that time heals, that days will go by, and that I have a thousand choices in each one of them. 

To the girl in the waiting room: thank you for saying that to me.

And to the other girl in the waiting room: you did it. One year down. One hundred more to go.

Day 260: power pants vs. cancer pants

Today I had my first rounds of immunizations, as I am “starting over” you could say, with my immune system and need all my shots again. I thought perhaps it was a cocktail shot with the few that I was scheduled to receive today. NOPE. Four separate shots, two in each arm. I hate shots. I hate needles. However, all the prodding and IVs and bone marrow biopsies and LPs that have happened to me have at least helped a little in the anxiety department. I know, rationally, that I will make it through the shot. So I focus on breathing and relaxing, and it also helps to tell the nurse to push it in slowly. Perhaps the worst part of shots is that icy cold WHOOSH of the stuff flying in. So, the slower the better; and if I can’t feel the needle, it’s not as bad. It also helps to have a heated massage (let’s not get carried away here, it vibrates on two levels) chair to sit in, which they have at Dana Farber. My arms are a little sore, but it’s not too bad. Immunizations round 1 complete! #boombaby In other news, my blood/kidney/liver numbers look great, and my chimerism (the percentage of my cells to percentage of donor cells) is holding at 100% donor. #BOOMBABY

Then on the way home from Boston, in true Friday the thirteenth fashion, my car died. It was the second time this week—and thankfully in the CVS drive-through (instead of THE ROAD), but still. Really though? After finagling and praying and scraping with a wire brush, the jumper cables finally worked and I drove straight to the mechanic and got a new battery. As I sat in the little waiting room at the auto place, masked and gloved, I spoke with a woman whose tire just blew up. We chuckled about car troubles. I explained that I had a stem cell transplant, which is why I was all covered up. It made me realize that I miss being in the world, meeting new people, and even those silly and seemingly meaningless brief conversations that let you peep for a second into a strangers’ life. My nurse told me today that I can go to the grocery store at low-traffic hours, and that in general, the strict rules are starting to relax: as long as I still stay away from crowds, dirt, and mildew-y basements. I guess this calls for 9:30pm ice cream runs. I’m glad to be able to start doing things again, mentally I’m trudging through. I feel I have lost so much of the strength I had to get through this. It’s just,…a long time. It’s a lot to ask of a person. I know it’s what I need to do in order to then live the rest of my life, but sometimes it doesn’t seem like the end is in sight. I feel alone. I’ve been searching for tools to help me mentally pull through. I’m trying to reach out to people. I’m starting a new theatre project with my company, and our website will be live in a few days. And thankfully, on cue today, a tool—however small, however silly—arrived in the mail.

After the mechanic, I came home to find a package that I’ve been waiting for. Meet my Power Pants, the foil to my Cancer Pants: helping me conquer each dreary day with their stripes, every lonely long hour with their stretchiness, and my sadness with their general badassery.

ONE PANT TO RULE THEM ALL. Cancer ain't got nothin on you…
As my mom said, "must be your donor showing" (the Knight may live in the UK)

pardon me while I go shake my Brit-striped booty to some Bey—

Day 235: rejoice, rejoice

In an effort to not make excuses of why its been so long since I've posted an update, I'll just launch into the updates.

I don't think I've yet reported that we have begun slowly lowering my anti-rejection drug; with the goal of getting off of it completely. With any other type of transplant, this would not be possible-- other transplant patients are on immuno-suppressants for the rest of their lives. The immuno-suppressants keep their home-immune system from attacking and "rejecting" the transplanted organ. But because my transplant was essentially of the immune system, there's a chance that I'll be able to get off the anti-rejection (there's a chance I won't as well, just have to wait and see). We lowered my dosage a little bit a few months back-- and I presented with some mild (but painful) GvHD in my joints and hands. This flare-up is expected somewhat, a little GvHD is actually a good sign (shows that the immune system is working). So we kept my anti-rejection where it was and I went back on some steroids (hooray). I'm now almost weened off the steroids (about 3-4 weeks left--they do it very slowly when we're dealing with GvH), and then we will begin to lower the anti-rejection again.

I will soon (in 2 months!) also start to get my first vaccinations. Because I'm starting over with a new immune system (right now I have less of an immune system than even a baby. A baby is protected by their mother's immune system for a little while after they are born) I have to get all vaccinations over again. Cheers to Measles, Mumps, Rubella, Chicken Pox, Hepatitis A, C, Polio, Influenza, Diptheria, Tetenus, Rotavirus, etc. Nice not knowing you.

Finally I mustered up the courage to ask my doctor about the timeline, as it stands now, if it's changed, etc. As far as I knew, we were in a wait-and-see stage, with the possibility of being able to join the world again around my 9 month mark/June/July. I thought I had a chance of getting back into the world this summer, but it is not to be. The 12 month quarantine is still in place, so I won't be able to go back to work or go to public places until October. This was a letdown for me, I think I had started planning a life for this summer--one that I did not see spent still in my apartment. I am trying to stay positive. I am trying to accept. I knew this was a possibility. But I have to say, I was really disappointed. Apparently my doctor is one of the more cautious transplant doctors, and I am thankful for that in many ways. I've probably avoided many more aggravations and complications due to his caution and my intense quarantine. But my mind can hardy take it anymore. This is really really hard. When people ask how I'm doing, I give some emotionless and detached answer that does not even begin to tap into what this has been like. The other day I was reading an article about a man who went through cancer (with both radiation and chemo treatments) and all through it he kept a journal: mostly pictures, some words. It is now published, and looking through it, he kept a sense of humor about the whole thing; but was also very raw and honest. In the article he says he's glad he kept the journal, because

“If you asked me now what it was like I would say, ‘oh, it was tough but I got through it okay.’ Something simple and dismissive like that.  Or I suppose I could go into something equally detached from my actual experience, an operatic flight of fancy about the existential anguish I experienced every day in treatment."

This makes complete and utter sense to me. It is exactly how I feel. And I'm not even through it yet. It's trivializing, to try to explain in a sentence or two what this has been like. But I find myself trying, all the time. Any attempt to explain it turns into a simplistic joke "oh its hard but the sun is making it better" "Wahoo, Spring""Just grappling with my plague of existential questions LOL!!!11" "i luv TV!"

I guess most of the time I don't even now how I feel, or I'm confused, or I'm just shutting off mental switches so I can physically make it through the day. I'm not sure. Probably all of those things. I think prolonged traumatic situations force you to shut off parts of your emotions, in an effort to self-preserve. I'm trying to be aware of this phenomenon in my own life; accept all of how I'm feeling, trying to not turn off. But in some ways, I think it's unavoidable.

That appointment with my doctor wasn't a total wash. He did give me the green light to go to other people's houses, which is a big step. So, can't go out in public yet--but I can venture to places other than my apartment, the car, and Dana Farber: which is all I've seen in the past 8 or 9 months. As long as you don't have a mold problem, I can visit! I've ventured a few, and am looking forward to getting out of here; small victory by small victory.

In other news, my theatre company has started a new project. I had to ask my doctor/nurse about being involved with our new show--if this was a feasible idea or not, and how involved I could be. They seem to think that as long as I'm careful and our rehearsal spaces are clean, I should be okay. If anyone's not feeling 100%, I'll just wear a mask. This was a huge relief, especially coming right after the news of my continued quarantine. I need this so much. I need something I can focus on, pour into, love and nurture and watch grow.

Over the past few months, "the trifecta" (the three of us goons) have been meeting and working on a script for a new project. Last week we held auditions to much success, and we have cast the show. Meeting, writing, running auditions, moving my body: it has been the most normal activity of the past year. I felt, normal. I could forget for a couple hours all this shit. And it has been life-giving. I am so excited to jump into this. It is one place where I can take risks, be daring, explore, make choices, decide. Almost no where else in my life has this been the case this past year. I feel like myself again, finally, when I'm doing theatre.

It is important for me to take a moment every day and look at how far I've come. From cancer trying to kill me, to weeks spent so drugged that I can't even remember them, to myriad unexplained pain and complications, to not being able to swallow or eat for two weeks, to waking up every morning stiff with bone aches, to sleeping all day and crying for the hours I was awake. To now when I can wake up and make breakfast without having to sit down and rest between stirring the oatmeal, go for a walk, write, host brunches, plan rehearsals, play bananagrams. It is day 235. In just a few days, it will be one whole year since this began. I have come a long way. And I need that reminder, again and again. And again. Rejoice, Rejoice.

up, up, and away---