Day 394: back to work, in every sense.

I wanted to wait until I had done the thing before I wrote about it. I needed to make sure I could get through it, with my new and different body and my new and different life. And I am here to tell you, well, I did it.

I am back to work.

I have started a new job (with limited hours starting off, thankfully) at A&J King, an artisan bakery in Salem. (ALL OF THE STICKY BUNS). It was a big thing to be back to work—way bigger than I anticipated actually. I didn’t feel the weight of the first day until one of my old regulars from Atomic came in and I suddenly found myself crying. Well, crying in the way that my body lets me cry now, which is exactly ZERO tears whatsoever (where are the eye drops when I need them? “Oh, I’m crying---hold on...” *puts in drops*. This scene will definitely make an appearance in my one-woman cancer comedy) I had to sort of cower in the employee corner for a second after he left. It was so good to see him--a familiar face that went along with my life before cancer.

It’s been a rough couple weeks, and a good couple weeks I guess. Good in that I am so glad to have structure in my life that does not involve the hospital. Good that I am meeting new people, which is really good for me as a human. Good that I am working at the bakery I have been wanting to work at for a while now. It’s been rough with the limitations of my body. This brain had been programmed with 25 years of experience with the old Bekah. This brain has my old body encoded: the whens, whats, hows and how longs of doing things, simple and complicated tasks, getting sick and being sick. How much weight I could lift, how long I could go, the strain I could survive. Then, cancer. Then, chemo. Then, chemo. Then, chemo. On top of that, a year of sitting around in an apartment or hospital room, watching my body whither away, muscles gone. My stamina is severely diminished. This is all very hard to take. Multiple times a day I have to remind myself of the things that I can not do. Don’t lift that box, you won’t be able to. Don’t make that much food, you won’t be able to eat all of it. Wear a million layers because you are ALWAYS COLD. Or, I’ll walk to work (a casual 10 minutes) and be completely winded and need to sit down with my new inhaler. One set of stairs still does me in. I have been told (finally to my great comfort) that lots of these things are very normal for a cancer patient, especially one in my situation. Okay. I keep trying to remind myself (and enlisting others to help me do so) that I am not done. That my body is still healing, it's not done yet. All of my bones and muscles (especially spine, shoulder and hips) are still recovering from being completely ravaged by a near-fatal treatment. The neurotoxicity from that treatment has now caused several newly developed peripheral neuropathy problems. With all the crap after the fact, and being in 'good standing' with my blood counts and liver/kidney numbers (which of course I am very pleased about)---it’s easy to feel like this is how it will be for the rest of my life. The new normal. Cancer is gone, so this is what's left. I mean, the thing is, we don’t know for sure. I may be a sickly freezing weakling for the rest of my life.

It’s been a challenge starting a new job with these limitations. At AJ King, some of the staff don’t take breaks. This is something that cannot be an option for me. My body aches, my bones hurt, and my knee swells and stiffs up because I am not used to being on my feet anymore. I have to take breaks. I don’t feel bad about it, but it’s not in my nature to be ‘the one taking breaks’. Or saying “can you pick this up for me” I AM A STRONG WOMAN GOD DAMNIT I don’t need your help! ...Except now I do. I don’t get mad at anyone who offers to help me; that isn’t it. It’s just that my body is a foreigner and there are lots of things I am not used to and that I don’t like.

I want to be able to do what I used to do. Rely on my body the way that I did. But the fact is, my body tried to kill itself. That is a really weird thing. And I am trying to come to terms.

A friend said it well: there is mourning of the person you were. There is mourning of the life that is gone. There’s no getting around that. And I’m trying to strive past it—or, gather the good things that I have still or have now, and walk triumphantly through this dark period. But so often it seems it will not be. I struggle with the feeling that the world has opened its’ jaws and swallowed so much of my soul. It’s macabre. I wish I didn’t feel this way. I mean, even now I can say that I don’t always feel this way. But when I am alone, or frustrated over my body’s ineptitude, or feeling nostalgic for life without fucking cancer (sorry for being so vulgar, but it is appropriate. If anything is attached to ‘fuck’, it’s ‘cancer’), I feel like I am suddenly made aware of the stone and tether tied around my waist that we are all forced to carry. That there is an overwhelming waiting darkness, and every attempt to light a match eventually goes out.

This doesn’t make me feel like lighting matches isn’t worth it. Because I think there is beauty. I still have that left. But there is such a fear in me that no matter what, the match burns out. Death wins. Space is dark. Truth is dark. I am a little person.

I feel a mourning of the person I was, body and soul. I used to feel differently about the world, about my existence and about these things. I remember a time when I believed that there was enough love, enough energy in a balance and that yes, the universe was cruel, but that the human experience was beautiful. It feels like something really crucial has shifted. Maybe this is just depression. A natural occurrence after a traumatic event. I don’t want to be like this forever. I want to believe there is a balance and that there is enough love—that I don’t need to guard myself and close up. I want to be free. I am trying to document when I can—what I feel. Because the only way I can see this making any sense is if someone else understands what I am saying. I was happier believing in balance and love as the central crux of existence and being. I would go back if I could. And that doesn’t even resonate with Rilke. “Let everything happen to you: beauty and terror.” I would go back if I could.

I’m trying to remember and act on Rilke’s next line: Just keep going. But when things go dark, it’s hard to feel the purpose of moving anywhere: when darkness over there is pretty much the same as the darkness over here. I don’t know. I’m cleaning myself out right now with this. I’m entertaining them all. I’m trying to get it out and maybe some sense will float to the top.

I must seem morbid. I do not always feel like this—I’ve mentioned this before when I was first starting to have a hard time: there are glimpses. I have laughed a lot over this past week. Cried a bunch too. Last night my theatre company did a collaborative show with some friends from Cape Ann Improv. It was a smash. I love things. I love people. It’s just these hours alone, and the nostalgic autumn...

another beautiful poem, by saint Rumi. please read it.

The Guest House

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice,

meet them at the door laughing and invite them in.

Be grateful for whatever come.

because each has been sent

as a guide from beyond.

--------------------------------

Let everything happen to you: beauty and terror.
Just keep going.
No feeling is final.


back to work. in every sense.

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 362: I'll have the Year, with a side of Terror please

This Friday marks one year since I lay in a feeble haze in the white box of doom and watched a cup and a half of red stem cells drip into my body. I feel that this anniversary should be a triumphant one; where I raise and wave my cancer-free flag, celebrating all of the accomplishments of this past year.

But to tell you the truth, I do not feel triumphant. I do not feel victorious. I don't feel brave. I feel like dissolving and disappearing forever. I thought I would feel different than this. But so many hard things have happened, some things that I can’t even write about. I try to reflect on this past year and honestly, it just really depresses me. The negative are overpowering the good right now. I’ve even tried making a list of the things I have accomplished. It’s not really helping.

Anniversaries are strange. They are a day like any other, going by. But they hold something else inside them—expectations, desires, longings. In some ways it feels like the day should be able to pass without a huge hullabaloo about it. But I feel it creeping closer, and I feel the weight of everything that this anniversary holds: this year, everything I have somehow endured, the physical battle and the emotional duress, the things I have lost... It doesn’t feel positive. I don’t feel like celebrating. This date represents and holds inside of it this entire year, and it’s really heavy.

I probably should try to not pour all of this year into a single day; but that seems hard too. I want to be the person I was—joyful, bursting to see the sun, dancing in my hospital gown. That part of me feels spent, used up. The world looks different. I feel like Life showed me its really grueling shit and I’m having a hard time loving it afterward. I don’t feel a mantra or a life lesson. Except that life actually tears people down. And it’s really hard to find a way to get back up. I’m really trying. I am really searching for things that make me feel alive again. I’ve been thinking about Self Care and trying to figure out the tools I can use to make myself happier. I make lists. I go for walks. I try to schedule things and time with people. I got a job that starts in a few weeks. I’m trying to do theatre. I bake a lot. I clean the house a lot.  I’m pickling and canning. I’m working on planning a workshop for DFCI. I’ve started doing more embroidery things, though my hands still don’t always function properly with those fine motor skills.

I’m trying to believe that I am still in process. It’s hard when now I’m getting back into the world, and people expect me to be like, “back” from cancer as if it was some horrible vacation and it’s over now. It’s not over. It’s not over. I feel the effects of cancer in a new way now than I did before, when I was just trying to not die. It’s not just a little blip of life that I missed. The world changed while I was in quarantine. Of course it did, I missed an ENTIRE YEAR. Everyone had babies. And that’s absolutely fabulous. I’m really psyched to be meeting all of the babies. It’s just one more thing that shifted and moved on while I was “away”. But I wasn’t off having an experience in another country or choosing the monastic life. I was literally in Salem MA this whole time, in my little apartment. For an entire year.

I feel robbed. And I don’t feel okay about it. I’m angry. Really, really angry in a way that I wasn’t before, even when I got diagnosed. Back then it was survival mode and I was like “I’m gonna get this shit done, BRB” and later it was such a physical challenge I didn’t have much time for anything else--and maybe I deal better with physical pain. Or maybe it has just worn me down to this place where I can’t seem to find the joy that I had. I just feel angry. And really sad.

I don’t know what to do. All I can seem to muster is to try and take stock every day individually. How do I feel, today? I am feeling good, today. I am doing well, today. I am feeling lonely, today. I am empty, today. I am sad, today. I am angry, today. I am ok, today. I am here, today. I hope that enough days will go by and this thing, whatever the hell it is, will eventually lift.



I am suddenly reminded of Rilke's words. I haven't thought of this in a while, and it literally just came wafting into my mind.

Let everything happen to you: beauty and terror. Just keep going.

So this is terror. Okay. Just keep going.

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 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 247: surprise and thanks, for you and the Greek Goddess

The world is so beautiful, so new, and so full of surprise. I'm currently staying at my parents' place near the Cape, and even though the weather has been pretty windy and cool, it's warm in the sun. This morning, for the first time, I saw a baltimore oriole outside my window (the bird, not the sports team…). Anne of Green Gables may be right that each day is new with no mistakes in it; but it also is new with surprises. I'm not what you would call a bird watcher, but this beauty was fully worth my praise; a brilliant mac-n-cheese tummy flitting between leaves of the japanese maple. 

And more surprises. Over the past few months, a friend of mine has been organizing a fundraiser “Café2Café” bike ride on the North Shore. The 70+ mile ride was today. Last year the donated proceeds went to a women's house on the North Shore for survivors of human trafficking. This year, the money was raised for living expenses for my sister and me. They raised almost $1500. I am again, and again, and again, floored by the love of people. I have never felt incredibly great about accepting monetary gifts, so I try to see this as the outpouring of love that it is. People are beautiful, and so good. The right words are hard to find to thank you all for your support, of all kinds. This has been the hardest, most physically and emotionally challenging year of my life. There were times I wasn't sure I could make it through, or was convinced that I didn't want to. Meds talking or not, there have been really dark moments over this past year. I've seen the bottom of the pit; I've dwelt there and felt the effects of that place on my psyche. Any plans I thought I had were utterly disrupted or severely re-routed beyond recognition. I've watched my body wither away and change shapes and colors, aching every moment as the strongest poison washed away my immune system. The months that followed were spent fearful and weak; sleeping most of the days, waiting for my body to miraculously start healing itself. It didn't seem possible that I’d ever come out of it, that I’d make it through those long months.

But it's happening. Right now. The distance traversed is gigantic. I'm not as dependent on pain pills anymore, I don't sleep nearly as much (though still a lot). I feel energy coming back to me, slowly--but nonetheless, returning. There were so many days and hours I felt I would never reach this point; and I can't believe I'm saying this. I am here. In this place, at this time, alive. Growing, healing, transforming. 

Lately I’ve been feeling negative towards my body for its lack of muscle and flexibility, and for general flabbiness. I am still blotchy, and I still have dark circles around my eyes, baby hair, and scars on my chest. But I am reminded today to look past these trifling problems, and pay homage to the great strength that my body has shown through the tribulations it has endured. My body has served me well, and I need to celebrate it. You done good, body! You've shielded me from many side effects, you've been beaten down: first by cancer and then by the near-lethal treatment--and remained even still. You’ve travelled noxious ground victoriously, voyaged dangerously close to death and pulled through, you Greek Goddess! You are worthy of praise and adoration! I will constantly fight the negative feelings and hold you in awe.

In those moments of doubt, as I’m sure they won’t ever leave me for good: when I’m not sure I want to do this anymore, struggle longer, wait for an elusive end to the trial—I must recall these moments of true surprise. I’ve found myself almost nine months out from my transplant, and a year out from the beginning of this saga. What surprise! I wasn’t sure how I could do it, how I could survive even another day of the solitude and depression and fear. But I am here. Here, almost nine months out. Only four months left of this quarantine. I’ve gone so far into the forest that I’m now on my way out the other side. Eyes on the (sur)prize!

So, thank you to everyone who rode in the Café to Café ride, and to Patrick for organizing the whole event. You guys confound me in the best way. And thank you to the Greek Goddess. I literally wouldn’t be here, right here, without you.

Day 240: one year, and a letter

To my dearest kin, my Knight,

It has been a full year since this began, somehow. 365 days. The earth has gone all the way around the sun while I have puttered and pillaged through another year of my confusing comedy of a life. I am now in remission. I am over 200 days out from my lifesaving transplant. I am here because of you.

And, I don't know you; in the sense of how one knows another person. And yet you are my nearest kin, my blood brother. We are so close, so connected. I have your blood in my veins. I now have your blood type, your immune system. Because of you, I am alive.

I don't feel that I have the words to say to you. Nothing sounds right. Nothing is enough, or fulfills my feeling about you and your choice to save me from dying. I don't even know if you think of me still. But I think of you every day. I love you, strangely and bizarrely. In a way I will not love anyone else, because I can't. I am in awe of you. I am proud of you. I am indebted to you.

It is strange to me that we may never meet. Though, I don't know what I would say, should the moment arise that we do. "Thank you" is so simple, stupidly simple; we say it when we take our coffee from the counter. We say thank you when someone holds the door. We say thank you when someone saves our life. Language fails. It is not enough.

So thank you for this beautiful day, the sun warming my back as I write this. For allowing me to see today. Thank you for this great book I'm reading. Thank you for my neighbors' dog running around outside, and the birds in the bushes. For music, for dance. For playing on the grass, sitting on the beach. For pretzels. For my hair that's growing in. For coffee in the mornings, for flowers. For my family, my sisters, my dear friends. For every feeling, all my tears, laughter, even anger. Thank you. I would have none of these things without you.

truly yours,

Bekah

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---

Day 185: the curtain is up

Yesterday Dana Farber held a Young Adult Cancer Conference that Rie and I attended, to mixed reviews. It is a difficult situation. It’s a conference; we are all there concerning a common cause. It’s a single day of new people meetings and speaker workshops. But the reason of our gathering is not “we all have brown hair” or “we all have dogs” or even “we all want to grow gardens.” Nope, it’s “we all have cancer.” By nature, this is not a light topic. And a conference by nature is a brief experience with morning and afternoon sessions in which you learn something informative. A conference differs from a support group—a support group is something you commit to, and through repeat visits you grow relationships and authenticity is organic. At a conference it’s hard to launch into a safe space in the amount of time available, and deftly handling a delicate topic like cancer just seems like an impossible task. I appreciate the enormous amount of work and organization on their part, and I think for some people it was a chance to feel like someone gets it. Marie found the caregiver workshop to be encouraging. I usually do not struggle with being honest—even in a public setting—but for some reason I could not engage. This is a problem that starts with me: I’m putting on the brakes because this is a club I never wanted to be a part of. I’m struggling with how defining it is of who I am now, the cancer girl. I guarantee it is the first thing people associate with me, and honestly it has been so life altering that it’s how I see myself too. So I don’t blame anyone for this; it’s not 'wrong', it’s just the reality of the moment. This is when I remind myself that it is not all bad, that I will continue to change and grow for the rest of my life, that this is just a swatch (albeit a large one) in the grand picture of my life and who I am.

There was one unexpected moment—one phrase—that struck me yesterday. In the opening session, someone read a short piece of writing about a part of her experience with cancer; among other things she said the following: “Cancer did not just disrupt my life, it disrupted my imagination.” And though the speaker did not take this thought to the conclusion that I was expecting, this phrase still resonates with me so much. I feel an absurd interruption of who I am as a person—my personality appears to me stunted and dried up, my capacity for entertaining joy in my life feels wounded. I feel lost, as in, gone away to sea. My dearest hope is that she’s in there, somewhere still. 

For the final session of the day, I had signed up for the creative arts expression workshop, and amongst the cray-pas and magazine clippings I found myself drawing what looked to be a colorful curtain, reminiscent of a circus tent, halfway pulled up the page. And it just sort of occurred to me: this is life. The curtain is up. As in, life is exposed, in progress, all hidden compartments and inner workings are being revealed with big bright lights, and the show must go on. And I’m in the middle of some creepy dance number that I haven’t practiced, and maybe I am also naked.  Real life is being revealed to me: sort of ugly and hard—whereas without cancer this may have taken longer to uncover, or perhaps never at all in this way. I don’t think this means I am happy that cancer happened, it’s not a joyous thing to be caught naked in front of an audience and a mirror. But I am trying to see it for what it gives me, gift or not. It’s hard to know if I’m pleased with the big reveal, right now it’s too close and I’m still trying to move my way through the finale of this segment. I had hoped that this time bubble would prove to be instructive and constructive for my person, and maybe it is and I maybe I just can’t see it. Right now it feels like I’m just barely scraping by with a dance that looks like sitting on the couch and making eggs.

I did learn some things about myself yesterday: one being that conferences aren't really my thing. I'm glad I tried it, something new: my first real excursion into the wild since being confined to the spaceship coupe. Perhaps in a few years, when this is more past than present, I will feel differently. Until then, bopping along my merry way...

Day 181: this is water

Something deeply embarrassing occurred yesterday, and for some reason I can’t stop thinking about it, so here we go. I don’t get embarrassed easily, so I find this experience to be unique and therefore worthy of conscious mulling over. I am afraid to write about it. But I am striving to be honest with myself, and I see this as a teachable moment. 

So self, listen up.

Well, I could not BELIEVE the people in front of me. So unaware of what’s going on around them; the other people who are waiting in line and possibly now late to an appointment, perhaps? Here I was, finally I had arrived fifteen minutes early; FINALLY early after weeks of being late for my massage appointments, and all the embarrassment that goes along with being that person who is always late and pushes everything late and late late late late. I was so happy to be early, to check in downstairs, pay the money, grab the receipt, get upstairs, check in again, get vitals done and then finally get to the massage. There are two women in front of me at the register where I have to check in. They’re talking to each other about the money, talking to the woman at the register, how much is it—oh really? Wow okay. How should we pay for it, oh it’s $246.50 with the discount? What about insurance, I think insurance is supposed to pay for it—well we need to submit it to the insurance for reimbursement, well is it better to pay with check or a card to submit it to the insurance company? I’m not sure if the insurance company will pay for it, what is the insurance? Well let’s submit it anyway, does the receipt say what it is on there? Can we have two copies of the receipt?—And would you like the dark blue bag or one of the other colors?—Oh, what are the other colors, yes can we see them all? And the tissue paper colors. Do you like the dark green with the blue? Maybe the white. Also do you want the light colored cap or the darker one? Do you have a box?

Starting to breathe heavily beneath my mask, I was able to hide most of my displeasure and annoyance. I just wanted to be on time for once in my life is it too much to ask? I felt the anger rising, so quickly it actually surprised me. I did the work, I got here early, shouldn't I be able to reap the benefit of doing it right for once? It took almost a full ten minutes for me to realize that these two ladies were in fact buying a WIG FOR A PERSON WITH CANCER, and what the hell is wrong with me? Why was I getting so upset?

Only five days prior I had just re-watched David Foster Wallace’s commencement speech that he gave in 2005 at Kenyon College called ‘This is Water’*. In the beginning of the speech, Wallace uses an illustration: there are these two young fish swimming along and they happen to pass an older fish going the other way. The older fish calls out to them, “Morning boys. How’s the water?” A little while later, one of the younger fish turns to the other and goes, “What the hell is water?” He goes on to say that, like these young fish who have no concept of what their world is made of, our human default setting is to put ourselves in the center of the universe: our hunger, our frustration, our needs are of the utmost importance; and look at how fat, stupid, lazy and inconsiderate everyone else in THE CHECKOUT LINE is (I know, it’s so specific; this is the height of my embarrassment), and can’t they see what they’re doing to me? Wallace challenges this unconscious ‘default setting’ of placing ourselves at the heart of our worship with the freedom that an education gives you to choose how to see the world. And this is hard, because what adult life is really made up of most of the time are long days, monotonous tasks, difficult and harrowing experiences, small pleasures, and little comfort. Dealing with this reality is the genuine challenge of life. To have an education is to have the chance—the freedom—to choose how to experience the world: is this a world in which I am the perpetual underdog, a world where the baddies are out to get me and ruin my chance at happiness? Or is it a world that is filled with people trying their best in demanding and intricate situations? Wallace offers an example in his speech: it is not impossible that the woman in front of you in the checkout line who just screamed at her whiny kid is over-worked, exhausted from staying up late hours with her husband who is dying of cancer, and who is now trying to pay for groceries with the food stamps that are stuck in the recesses of her wallet. It is not impossible. In fact, it is nearly the EXACT situation in which I found myself yesterday. Even as I was standing there, thinking, “this is water. This is water.” I was boiling. I knew FOR A FACT that the women in front of me are so intimately close with someone who is going through cancer that they are paying for her wig. And yet. I boil.

And it was this bizarre meta-experience (oh existential crises) in which I found myself divided. On one side, I am trying to be honest about situations and experiences, and truthfully living out my feelings. And I was feeling frustrated and angry that these women were literally talking about tissue paper shades for fifteen minutes while I missed my appointment. And yet, I heard the little voice inside me ‘this is water. This is water, Bekah.’ And I had to let that be the prevailing voice in my body. I had to let the anger go. Manually, if that’s what it came to (and it did): Unclench your teeth, soften your eyes, breathe out. The honest truth is I have no idea if the woman in front of me was barely hanging on to herself, maybe she was just managing to hold back tears, like I was, trying to pick out the damn tissue paper. She probably knew how stupid it all sounded but somehow it was still a monumental decision. And I have to accept that. We are all going through the trenches; albeit at different speeds and abilities and at diverse points over our lives: but it is the universal experience. I want to choose to see that we are all a part of the same scheme, all our own little cog in the capital G Grind that holds us all in a balance.

And perhaps it will start to transform: from little cogs to a big picture system that will somehow never cease to humble and amaze. I want to soften my focus to allow the peripheral to be just as influential. To do that work. To allow people to affect and change my life, to allow splendor to exist in the mundane, to let everything happen to me: beauty and terror.

“The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and sacrifice for them, over and over, in myriad petty little unsexy ways, every day.”

—David Foster Wallace, This is Water

* This speech was published as a book in 2009 under the same title, and here’s a link to a little video that uses an excerpt from the speech (and is so worth watching) http://dotsub.com/view/6b8cc93f-3b53-486b-a1ce-025ffe6c9c52

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.

Day 111: steroids, anti-depressants, baby birds

My throat is cracking like the plains of the Sahara because the hospital air is filtered and re-filtered and conditioned and DRY. So dry. I made myself a cup of throat coat tea. This stuff is pretty good, if you like that sort-of-sweet licorice flavor. I happen to, so it's real nice.

I just got home a few hours ago from a five day stint in the hospy, and you know what that means. (Maybe. In case not: bruised arms from so many needles, aching back from crappy bed, new medicines to take, stir crazy mind from small room, etc.) I had to go to the ER on Friday because of increasing chest pains that were making it more and more impossible to breathe. As it turned out, I had some probably-viral-thing that caused fluid to build up around an already inflamed heart lining. I forget what it's called, but now I'm back on steroids and it seems to be working. No, not muscle building steroids. These babies play with your mind and make you eat and walk around all day. Thankfully the specific type they put me on doesn't seem to have any huge effects (cue horrible memories of other steroid trials. The pacing. The crying. The wanting to die.) Thankfully it was pretty easy to tell last time that the steroid was what making me want to kill myself, so after just two days of trying it out, we cut it off.

I'm not going to lie though: the steroids just intensify what's going on inside your head. They raise the stakes higher, and deepen the agony. For days upon unending days I felt trapped and alone in this nightmare. I was going to cry until my body disintegrated.

This brings up an issue that I can’t shy away from anymore. Depression. It’s happening. I didn’t want it to happen, I wanted to stay strong. I wanted to get through this sludge and have a good attitude. Conquer each step like victories of gold. But there’s too much sliding down the cliff now for me to hold on anymore. I feel weak and unmotivated and dull. Most days I feel like doing absolutely nothing but maybe watch some crappy reality TV and maybe sleep. There's too much Always winter, never Christmas in here. And when I look at the time I’m spending, I think to myself, this is not intentional living, Bekah. This is not how you wanted to spend this time. And I hate myself for it. It makes me feel worse, and I slip further down, the mire slop piling around me, self and body fading away.

So on Friday I’m going to ask for help. I’m going to try an anti-depressant. It’s so hard to get through this, even with all the support I know that I have around me. I guess I just need a bit more help in this way. I’m no stranger to anti-depressants or depression, though it was a bit harder to spot for what it was this time around. I’ll report back my findings as I enter back into the world anti-depressants. I hope I can feel a change.

On a lighter, hairy-er note, my sister thinks I look like a baby bird. 

...You can make your own assumptions.

ps. It's finally past 100 days, and I've been eating salad like it's my job, even though nothings in season and probably doesn't taste very good but I don't really care at this point.
And tonight, I am going to eat my favorite Siam Delight curry for dinner. That is one good thing I can count on.