Published, Cancer Planet, Expectations and My Precioussss

Hello hello hello. NEWS FLASH I have good things to report after a long spell of not-as-good things.

I have the pleasure of being published by elephant journal again, and you can find the article here. Feel free to read it and pass it along to anyone who you'd think would appreciate it. The first time I was published by elephant journal was back in 2014, and this new article (like the first) is an adapted excerpt from this blog. The original post was written at my one year post-transplant anniversary. This article, To the Girl in the Waiting Room, holds close many of those same words- but I've re-written it a bit from the perspective of my current self: a little over two years out.

With another year under my belt, I was...well, not surprised really, to have a lot in common with the one year old me. I'm still struggling with a lot of the same things. Depression, frustration, etc. What I didn't really expound on in the post (both the original and in the new version) is the real let-down of being "one year out" (now "two years out") and having your expectations of where you should be crushed to pulp. I mean, the sentiment is there I think, as it does have a lot to do with depression and I believe it to be a pretty common feeling among cancer patients. Or anyone, really. We have expectations for ourselves: where we will be, what we will have, what we'll be doing... We have expectations for other people: what they'll do, how they'll treat us, how they'll react to us or a situation. And when the reality sets in and those expectations are not met, it can be crushing. Sometimes its a close miss, other times it's like you're on a different planet. So here I am on Cancer Planet. Yeah...Not the planet I was expecting to be on at 27, definitely not the one I thought I'd be circling the sun on for the last two and a half years. But even on your planet, Cancer Planet not excluded, you develop expectations of how this will go, where you'll be in some amount of time, etc. ...And then a giant meteor comes hurling out of nowhere and there's no Bruce Willis to save you.

Expectations are faulty: when they are unmet, they cause animosity in relationships, they cause self-doubt, fear, depression. And it's not like we can always help it either. So many of our expectations are subconscious, and sometimes they operate entirely in that realm: the subconscious mind builds these expectations, the expectations are not met, and then we're angry, frustrated, sad, upset, pick your adjective, and we may not even realize why.

I've been working to try to peel away my own layers in this respect: to have a deeper understanding of my own emotions in all situations in which I find myself. Sometimes it's difficult to understand- why am I feeling anxious? Why am I having a mental breakdown right now? Why am I angry? It's not always (ha-ha, almost never. Let's be real.) a rational one-to-one ratio of symbolism or set of chain reactions. But I am really trying to 'unpack' as they say, my emotions and try to get to the root source of them. Why am I anxious? I may not be able to go through this mental game while I'm having a panic attack- but maybe after it's over I'll think back and see if I can figure out a trigger, whether exterior or interior, that may have set it off. When I'm angry or frustrated (again, maybe not so much in the moment...work is work is working on it): what is this really about, under the surface? What is the expectation that is not being met? And what can I do about it?

My mother, in her great wisdom, told me long ago that almost every relational problem (people interacting with people: it can be corrosive!) stem from unmet expectations. I have discovered time and time again that this is very true. Whether or not those expectations were conscious, unconscious, rational or irrational... When they are not met, we respond with a negative emotion (again, pick your adjective). And I think, to dig even deeper into this, these problems really come from the fact that we are individuals. We are intrinsically different from each other. There is NO ONE like you. Not one other person who is like you in the entire world. One of my favorite quotes from Carl Sagan (of which there are many) is this:

"If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another."

And this gets at a True thing: each person, with their eccentricities and flaws, is singular. And I think if we really take this idea and honestly hold it in our lives: we will be overcome with awe. Human beings are incredible. They are also incredibly complicated, and our emotions get more complex as we mature and are able to simultaneously exhibit multiple deep-seeded emotions at once. It's a really weird and often irritating thing that we do.

So, to backtrack here a bit after all that rambling- I'm trying to understand and place myself as a part of this Awe. I disagree with myself all the time. "C'mon body, you stupid stupid lump!" "Seriously, brain? You wanna go there right now?" *insert panic attack* "Are you kidding, muscles? How can you cause so much--AHHHHHHH" (muscle spasm, tears, anguish.)

But I'm gonna let me live. Because in a hundred billion galaxies I will not find another.

This is not meant to appear or manifest as self-love to the point of self-worship. I suppose there's people who struggle with that *cough-Trump-cough* and that's a different thing. I'm talking about the self-hatred that exists within so many. We need to view ourselves and each other as innately precious and individual. And we need to take the time to honor that preciousness by trying to understand ourselves and others better. Our true motives, even if the result is flawed. After the panic or anger or embarrassment subsides, to take a minute to figure out the under-workings going on there. And perhaps, with enough practice, to be able to do this sort of mental exercise in the midst of difficulty: to see ourselves as precious, as the other person (if another is involved) as precious, and act accordingly. To take care of what is precious.

So here's to you, My Precioussss.

No but really.

In other news, anti-depressants can really work. I started a new one on top of the one I was already taking, and it is helping a great deal. I am very pleased to to say so. After a very long time of a hard time, it's nice to have a more steady emotional state. At least, without the increasing depths of the low times. Those haven't been back for a couple weeks.

And I'm going after my goals. I'm writing more, again, as I'd hoped I would. I'm exercising (AKA KICKING MY ASS INTO GEAR OMG) and building muscle and increasing my flexibility. Every morning I wake up (IDK how long this will last; I hope a long time!) and I think: NO STRINGS ON ME. Going after my goals like a mofo. YOU HEAR DAT EXPECTATIONS? But I also know it won't be a constant happy road. I'll hit bumps, plateaus and valleys like anyone else. But I'll let me live. My Precious.

Day 722: Anniversaries

Today holds a lot of things inside it. I've written about it before: anniversaries can be so multi-faceted. It's the second cooled down day that we've had in a row, and I'm drinking tea and wearing my coat in the house so it must mean Autumn has arrived: as New England seasons usually do, shocking us after the intense heat wave of last week. Fall winds are whispering at our doorstep, getting ready to color the trees and cover the ground with crunchy autumnal love. I am thinking of so many things of the past. Nostalgia hovers in the changing of seasons, I think; especially this one, Summer to Fall, every year.

Today, fourteen years ago, the Twin Towers, a plane in DC and a plane in PA fell from the sky, and our nation felt the heaviness of it all- the heaviness of terror, and the horrible evil that this world harbors in dark corners. Somehow we are now here, slightly older, remembering that day with a sadness that somehow seems to refresh itself with grief every year. Yes, let's never forget. It also brings to my mind the atrocities that take place to this magnitude every day, all over the globe, even as I write this. Let's never forget that, either. It can be depressing, to think of the world this way, to see it through the eyes of its atrocities. But in order to carry on in my life and not be paralyzed, I try to choose to see the world through a different lens.

Today, 67 years ago, Isabel Sadler married her high-school sweetheart, Louis Plavidal and continued a family tree that eventually grew to where I am now. This stud and stunning lady were my fearless, loving, hilarious, light-up-the-room grandparents, each of them fulfilling those words in their own way.

My Grandad, Lou, was a funny, well/loudly dressed party-starter; a tennis-playing, go-cart-racing, sail-boat-wielding, bird-hunting, model-airplane-building, dog-loving, DIY-fix-it and chili-contest-contestant, with a sweet tooth that would make dentists around the world run and hide. His famous undoing were jellybeans. As kids, he would sneak us tiny colorful gumballs from his gumball machine that looked like an old-timey gasoline dispenser. They were always hard as rocks, but we loved them anyway. He brought out and put together the intensely detailed and delicate train set at Christmas-time that would run around the tree, and was well known for re-gifting things he'd been given from work-related clients etc (He worked for General Electric). Was this a predisposition from being a child of the Great Depression? Was it in jest? Hard to tell. We laugh about it still. We always (and still to this day) have a Christmas puzzle that the family works on together, and he created a mode of puzzle-ing called "Touchy-Move-y" which was instated towards the end of the puzzle, when there were only a handful of pieces left, and you weren't allowed to touch a piece unless you knew exactly where it went. Now picture a bunch of people hovered over a game table with their hands behind their backs... He was also well known for having approximately 900 projects going at the same time, most of them never fully finished. He loved boats and cars, and had his share of fixer-uppers, including a 1965 two-seater Lotus with a loud engine that he would take turns driving (flying) us three grand-kids around the neighborhood, probably to Granna's somewhat dismay at the speed.

He had a billion lovable disaster stories ('lovable' and funny always later, after-the-fact of course- though he probably always found the humor while they were happening...everyone else involved probably didn't until much, much later), always told and re-told at every Thanksgiving, especially after a "drinky-poo" (CC Manhattan on the Rocks- coincidentally my father's drink as well). Most involve trailers and their untimely unhitching, tires coming off and rolling past them on the highway, and canoes wrapping around rocks in rapid waters. He was an adventurer for sure. Their house was filled with his duck-decoys, and always smelled of old magazines and books. He had a great laugh, and when he really laughed: with eyes squeezed shut in a great guffaw, maybe a tear peeking out of the side of an eye...I can hear it right now.

My Granna, Isabel, was a gentle and kind, often quieter and observant counterpart to my Grandfather. She was a cold-peanut-butter-sandwich-making, health-conscious "you-have-to-drink-a-glass-of-water-before-that-juice"-saying, at-the-same-time-coffee-ice-cream-loving, read-to-us-in-the-hammock, and later in life: oatmeal-colored-everything kind of gal. Before I was born, she would follow her husband on many a trek into the wilderness and to dressy dinner-parties, and I imagine she held her own quite well. Pictures tell the tale of her classic beauty, which she let shine through simple yet elegant attire. Later on, we found several decadent sequined and feathered masks in their attic, apparently worn to mask parties, as this was something people actually did back then-classy as heck (Granna would not approve of me using the word "hell" there, even though I believe it to be appropriate). Granna had a stillness to her- not in the sense of not moving, but just an understated composure that we are hard-pressed to find these days. She was a smaller woman, but the thought of her smile and round little cheeks fills this giant kitchen I am sitting in right now. Later in her life her laugh dialed down a bit and sounded like a little cooing owl (I know, owls don't coo. It's just, bah it's the best I can do to describe it), with her little face squinting up (also not really a saying. Okay, just bare with me and imagine the cutest little lady "hmm-hmmm-hmmmm"-ing with her eyes and mouth closed tight like a pin (is that a saying?) at things she found funny). She also was famous (well, certainly family and friend famous) for her to-this-day hilarious cat joke. If you haven't heard it, I'm sorry. I can't transcribe it; so you'll have to ask me in person. I do a pretty good impression.

She was a very intelligent person, and it wasn't until much later that I learned just how smart she was. Had she been born in a different era, she would have been a scientist, probably in the field of particle physics. We'd find science articles marked up with her gentle scrawl, readings about sub-atomic particle discoveries and general cosmology. I reckon that if she was still alive and we could talk again, we'd have many very interesting discussions. But instead of following what was apparently her hidden dream, she studied home-making in college, as was the way of things back in the 50s. As a child of the Great Depression, she washed and saved aluminum foil, and rarely wasted anything. The phrase I recall most heard from her (besides the cat joke that we'd plead for her to re-tell all the time, even up into the last years of her life), that I use all the time in my life now is: "everything in moderation." Which is how she lived her life. She also had an unwavering faith in God, which I admire, even if it is from (somewhat) afar and from a different place. I have learned a lot from watching all of this growing up, re-thinking over it, and re-examining it now as an adult. There are so many things I admire about my Grandmother, but her gentleness, steadfastness, and considerate moderation are towards the top. She was a magnificent woman.

We'd gallop around their ranch-style house and modest backyard, color with crayons in the aqua kitchen, play with Grover- their big yellow lab with quintessential dog breath, pick the delicate coins off the dried money plants, swing in the shaded hammock, work on puzzles and play dominoes in their mustard carpeted living room, and venture into the dark basement where Grandad did his projects. Much of my early writing was done on old sheets from yellow lined legal pads in that house, and especially in the basement behind the many-year-out-of-use bar towards the back near the sliding door. I'd sit on the dusty (a pleasant mix of real dust and wood dust) floor and write stories about lots of things, but a lot about a young girl and her adventures to summer camp where she would discover magic in one form or another. [side note: Where are those stories now? I wish I knew where they went off to, there's probably a short story in there somewhere, or maybe it was just digested and regurgitated conglomerations of stories that I was also reading at the time. Hmm. Well, we'll never know.]

Today I am remembering these two great people. Even though they both passed away before I was truly able to really appreciate them as human beings (I think), I consider them and who they were now, and I feel humbled and blessed, and tearful. There are many wishes I have about them, wished I had played my grandfather in tennis (he probably would have won, though I think I could have given him a run for his money), wished I could talk to my grandmother about cosmological ideas.

So today is full of anniversaries, these are just two. Both remind me of what being a human means. Both challenge me to leave this world better than it was when I found it.

 

Young and beautiful Isabel, whom my mother is the spitting image of.

 

Isabel (on left) and Mickey, her older sister (Easter 1947, the year before they got married)

 Lou and Bel and my two uncles Gary and baby Rick, before my Mom was born.

 

and, my Grandad, the ultimate jokster. I can hear Granna now: "Loouuu."

My sister Rie is the namesake of my Grandmother (Rie's middle name is Isabel) and they always had a special bond.

 

This is me three years ago, sporting one of my Grandad's spectacular pairs of pants. He was a colorful dude, in all the ways.

There's many more pictures, of course- these are just the ones I could find easily thanks to social media. There is one picture in particular of Isabel and Lou's first Christmas that I couldn't get my hands on early enough for this post, but it's probably my favorite picture of them. Perhaps I'll find it and add it in later.

Love you both.

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.