Tindur and the Orchard

Tindur (Super Pony) and I went on an adventure yesterday!

The reason this is so amazing needs some explaining.

Sunday and Monday mornings were kind of rough for me. I woke up each morning with blood on my pillowcase, a massively bloody nose, a body that felt like it had been beaten with metal poles, and when I sat up my chest was so tight I actually couldn’t breathe (amazing how chemo side effects mimic panic attacks). And I was alone. Sunday morning I pressed my head against the headboard of my bed and cried for a good 15 minutes. Monday was a bit shorter.

Sometimes, when you’re sick like this, everything just sucks. And recently I’ve been thinking about how people respond to this fact and what’s most helpful for me (which is an exercise I’m bad at, but one I need to be better about, since without articulating what I need my life is gonna get even worse a lot quicker). In the last two days, two friends have said the following words to me, when I describe how I’m feeling on a particularly hard say: “I can’t imagine.” And those three words are simple, but they do two crucial and priceless things: they validate my emotional reactions, which in turn makes me feel more human and less like I should always handle this with grace. Which, by the way, I can’t — and which, as I’ve had to be reminded of these past couple weeks, is totally okay and acceptable. As I’ve heard many times but only recently begun to believe, “Kiara, it’s okay however you react. This sucks and you get a pass.”

This is not to say I can be a monster all the time, and I would never presume as much. What it does mean is that in the moments when everything does suck and I feel totally and utterly overwhelmed with the awful fact of my illness, and all I need to do is scream and cry about something, all that anyone around me should attempt is comfort and love. Endless happiness, logical reasoning, or “talking down” don’t and shouldn’t work. Sometimes you just need someone to hug you and say “I know, it sucks.”

But back to the pony.

Yesterday I decided I would take Tindur down to the lake and play around on our own for awhile. I was having a kind of rough day and I wanted to do something really lighthearted and fun (this is why I own Super Pony). But my chemo addled brain had a hard time remembering where the entrance to the trail to the lake was, and on top of everything else that was suddenly the worst thing in the world. I sat on Super Pony in the orchard and cried — just bawled — and shoved my face in his mane. And he sat there, silently (duh) while I sobbed and shouted into his neck “it’s not fair! I hate this!” And once or twice nuzzled the toe of my boot.

After ten, fifteen minutes, I brought my head up and looked around. The world was still standing, the sun was still shining — but if you told me that while I was freaking out I wouldn’t have cared or even known what you were talking about. Tindur’s silence was a blessing — it reminded me that it’s okay to have random outbursts about even the most inconsequential (or consequential) things sometimes. Because the thing about a terminal illness is that it gets mapped onto every part of your life. And after awhile, it’s not that the pain of it goes away — it’s that you get moderately better at managing that pain day to day. The first three months, I’ve been told, are the worst. Every day is hell. And I can believe it because, even though I’m still living in that hell, things are slowly getting better.

Anyway, Tindur and I turned around, walked out of the orchard and down the other path across the street, and found the trailhead for the lake. And when we got there, it seemed like a massive accomplishment, even though it wasn’t that much of a thing to accomplish. But I made it — I found the lake. And my freak out in the orchard? Well, it’s part of the narrative and a necessary one at that. We need the space to panic, to freak out, to shout and cry, because not only does it make us human, but it’s oddly comforting. I can’t explain why, but it is.

And in my retellings of my hard mornings and yesterday afternoon in the orchard — of which I know there will be many more, in slightly different forms? I laugh. Because really, that’s all you can do.

And, it is sort of funny.

Layers and Layers

Since I was about fourteen, or fifteen, or whatever age these things typically manifest, I’ve struggled with depression and anxiety, or manic depression, or whatever you want to name it (I’m often fond of saying I’m just a bit crazy — just enough to make me fun, at least most of the time). I’ve been on and off medication, in and out of therapy, and generally tried to face the root of my manic depression head on in some productive way. And, as I referenced in the last post, sometimes that process is not a happy one, or an easy one. Sometimes it’s downright awful; and now it’s one I’ve had to repeat in the last few months, which is especially frustrating because I thought I had moved past so much of what I had once struggled with.

One of the things that happens at the hospital where I do my treatment is that, when you are diagnosed with a terminal illness, they set you up with a psychiatrist immediately. Unless you stridently refuse, they put you on medication. About a week ago that medication finally kicked in for me, and this corresponded with when I stopped taking steroids to counteract the immediate effects of my chemo. And suddenly, with the clarity that accompanied those two changes, my actions over the last six weeks don’t make much sense. They frighten me, and they worry me that I’ve taken a step back into a space I thought I had left long ago.

Over the years, I’ve gotten tremendously good at masking a lot of the not too pleasant effects that dealing with manic depression causes. I’ve always been open about talking about these problems in the abstract, but I’ve kept most of the actual problem silent and away from the public eye. I feel that often I’m tremendously good at putting on a strong and tough front (hence why my blog is so reasonable and measured and calm), but then equally bad at maintaing that strength privately (hence why I have bad moments when I’m with those I trust the most, often at random and without warning).

And those who know me best have also seen me at my worst — and that worst is pretty awful. It’s angry and panicky and sad and anxious. I yell and scream and cry. Often, the particular issue my outbursts orbit is something that takes multiple and repetitive breakdowns to address (I may be a *tad* obsessive). And, the worst part: often those emotions are misdirected to whomever stands in my way and their own emotions are marginalized in the process. It’s trying process and often I wonder why anyone puts up with me at all. It makes me feel terrible and responsible for not only my own sadness, which I feel I should be able to control, but also for the sadness it causes others. I know it hurts — I hurt — other people. And that sucks.

I know I’m hard on those around me, and I know cancer has made that worse. Those close to me have borne the brunt of my anger and stood on the receiving end of that abuse. I want to alleviate some of that stress, if not all of it, but I’m not sure how. I want to be better to those closest to me so that I direct less of my frustration and pain and sadness and anger toward them because they don’t deserve it. But I’m not sure how to walk the line between masking my emotions and dwelling on them. And I know, in the face of this diagnosis, I need to figure that out or risk alienating those I need around me the most.

The multiple layers at work here are frightening and hard to navigate. Because when it comes to honestly working through anxiety and depression, there’s no right or wrong answer, and that’s frightening and can make the work seem even more difficult. But I’m trying to take responsibility for these traits and tease them apart so that I can better address these obstacles one by one. I anticipate this will be a difficult process, but processes I can manage.

I mean, hey, I’m a doctoral student in the humanities. Aren’t processes all we talk about anyway?

Recipe for Resilience

Resilience in the face of fear and uncertainty and pain is a funny thing. I’ve always known crafting and then using your own strength is not an easy process, or a straightforward one, or a happy one, but I’ve always believed in my ability to do it. Though being diagnosed with terminal cancer is probably the worst thing I’ve ever had to deal with, it’s not the only hardship that’s been thrown at me. That series of difficulties — and, in the words of a friend I spoke with last night, “Jesus, Kiara, you’ve faced too much” — have strengthened me and made me who I am. That’s something I believe — have always believed — wholeheartedly: if we face and acknowledge the pain, fear, and misery of our hardships, process them with the support and perspective of those around us and at the pace our difficulty demand, we will develop lasting resilience and strength. This is not a one off process, it’s one that needs to be repeated time and time again.

So here’s the thing about the core of yourself, when it’s defined by resilience and strength. It’s nothing you’re born with. It’s nothing you acquire by a function of time or patience. It’s something you have to work actively and hard for, time and time again — something that only comes when you take the difficulty you’re handed and face it head on, process it openly, articulate its effects, and work through with the support of a community that can not only hold you up in your weak moments, but can also remind you that you can develop the strength to get through those moments. Bravery isn’t silent resistance or gritting your teeth and baring it. Bravery is knowing that the road is often rocky and frustrating, but knowing that that road is part of the journey, and your ability to see it through, face its difficulties and learn from them, will lead to better and more promising moments later on.

I’ve often been told I’m courageous and strong. I think I’m finally starting to understand what that means. Because I’m not always together or composed. I have awful, frustrating, angry, sad moments. I have days when all I want to do is scream. And, from a long road of trial and error, I’ve learned the best thing to do with those emotions is to let them out, be honest about them, and think actively about how I best need to process them to understand them. I’ve found great solace in those I can rely on in my worst moments, who can help me with that process and remain strong when I’m not. Because getting fear and pain out of your head not only clears up your own thinking, but gives you the opportunity to gather strength and perspective from those around you.

I think that’s another thing about being strong — perspective. In even my worst moments, I’ve been able to look at what’s happening and say — albeit sometimes very softly, and to myself — this is a function of time, not of myself. Having the perspective to know that most often misery is temporary and something I can actively work through, rather than tamp down and run from, is incredibly soothing. It’s difficult, because misery is one of those all encompassing emotions that often looks and feels more long lasting than it is. And, with the added bonus of my diagnosis, misery and fear are things I will constantly battle. But still, the fact remains — even the most awful effects and emotions that accompany my diagnosis are not all encompassing and can be moved through. Sometimes they take awhile, and that process can look awful, but it is possible. The last month and a half since my diagnosis have often looked and felt awful, but in the last week or so, things have been looking up. I’ve been having more good days than bad, and been better at managing and understanding the bad ones. I’ve been feeling more stable and steady, more strong on my own two feet. The perspective I maintained, even in my worst moments, told me this time was coming and made the worst moments worth living through.

Fear and pain are there — will be there — for every step of my life. Sometimes they will seem overwhelming, sometimes they will seem manageable. I’ll have rough days when I need the strength and support of those around me, but I’ll also have better days when I feel more equipped to deal with what’s thrown at me. Placing all those days in the larger perspective of my life and all the good it can offer is key; understanding the true cause of misery and fear alleviates us from the dangers that come when we don’t see our actions in broader contexts. When we try to manage overwhelming pain or fear or misery or anger on our own, it eats away at our strength and grows so large in our heads that it swallows everything else and becomes unbearable. But with the help and perspective of those outside our situations, we can better move through, process, and learn from even our most trying situations.

And that’s another thing I’ve learned — I need to be surrounded by people who are as strong and resilient and brave as I am. Because I need people around me who have gone through that process of facing pain head on and dealing with it, who understand that we need love and support around us — the kind of love I wrote about in my last post about Super Supportive Roommate. We need — and especially I need — people who are equipped to deal with us at our worst moments and help us through them. Because worst moments never go away. If we’re honest with ourselves, we know that hardship is a fact of life. And we know that real, major hardship isn’t something we process in a day, or a week, or even sometimes a month. Major hardships are just that — hard — and often the work we do to move through them to the other side is ugly, frustrating, and horrifying. But moving through them, rather than running from them, is key because that is an ongoing process that, while it includes a lot of difficulty, also breeds a lot of strength.

And that’s where I think resilience comes from. From those moments that are difficult, and ugly, and fearful. From out of our worst moments we can harvest good ones and the faith that, as those worst moments get less frequent and more manageable (as they have been for me in the last week or so), the good ones will become more prevalent. Because that’s the other side of strength and resilience — knowing that the ugly process of developing courage and the ability to cope with pain and misery ultimately brings a more lasting, inner, and real happiness.

I can never opt out of my life, which means I have a lot of pain and misery to face going forward. Yet I know that I can rise to the occasion of what is thrown at me and the effects it produces because with the experience of great pain comes the potential for great happiness and the very real growth of great courage. From within my own sense of courage, I’m starting to find that happiness again. It was a long, difficult, and trying road, but I think I’ve finally arrived.

Those Around You

Week 5. I’m standing at the end of Week 5, the brink of Week 6. Week 5 Week 5 Week 6.

I’m really good at physical side effects. Today, I’m exhausted, feel like I’ve been hit by multiple trucks, and generally worn down. Wednesday is supposed to be my easiest day — it’s the day farthest away from my last infusion — but I know that even that “certainty” can be hit or miss. Especially after Weeks 4 and 5 — the turning points with taxol, at least in my experience — any day can be my worst day. Or every day.

As time goes on, any day more and more becomes every day.

And that’s okay. But one set of side effects I’m less adept at handling is the mental side effects. The combined effect of chemo and steroids on my brain is exponential and, to be honest, frightening. Usually, my brain is a pretty okay place to be. It’s energetic and multifaceted, fairly stable, and pretty happy. I can get wound up in myself and my worries sometimes, but under normal circumstances I’m pretty okay at managing anxiety. But chemo perforates your sense of reason, logic, and focus; steroids make you anxious, paranoid, and depressed. Together, they make me feel like I’ve lost myself and, instead, have been replaced with someone who barely resembles me.

When I try to write my dissertation these days, I can hardly follow my own train of thought. Ideas that, a month ago, were fully formed and clear in my head are now whispers or hints of what they were, or what they might have been. Writing is nearly impossible — I forget words, can’t follow a sentence through to its logical, syntactical conclusion, and don’t have a clue how to parse through or structure an argument. When I received comments from my second dissertation reader the other day on a section of one of my chapters, every single one of his suggestions were things I knew I was doing wrong at the time but felt I had no tools with which to correct or bar against. Things I knew I should be able to fix, but can’t. Though this sounds like a common doctoral student complaint, I recognize a different texture in this process now, and it’s frustrating. Ways of thinking about and processing the components of my dissertation that I know were once forefront in my mind have receded so far to the back  that I can’t find them.

This inability taps into and exasperates the side effects of the steroids. I fear that I will never regain my focus or work ethic, that the rigor and dexterity of my thinking is gone forever. And it’s not just work; so many facets of my life are blurred or stunted by that paranoia and sadness. I fear losing so much now — and fear is not something I’m accustomed to processing or experiencing. Any minor weakness or fault line suddenly seems unbearable and endless, and my brain keeps trying to convince me that nothing will ever improve.

I can’t imagine how awful this must be for those who are closest to me. I’ve always been known for my energy, enthusiasm, and happiness — and I know seeing me reduced to fear, anger, and desperation must be alienating and frightening and taxing. And knowing this locks my anxiety into a feedback loop where I fear that I’m pushing away those I love.

I almost welcome the coming weeks, when I become too tired to worry or feel sad.

Few people have witnessed these side effects first hand. Cheerful Boyfriend, obviously, who manages to stay cheerful despite everything. Another is one of my roommates, who has been by my side for so much of the treatment. And her response to this whole process manages to puncture the veil of anxiety and remind me that the world is not ending — that these fears are temporary, a result of the treatment, and don’t have anything to do with me. Super Supportive Roommate is one of the warmest and patient people I know. Whenever I get especially frightened or worried, she listens to my fears and reassures me that everything is okay. She makes me feel safe; I’m lucky to call her a friend.

One of the things cancer reminds you is what love looks like. Super Supportive Roommate decided to stay in Boston a month longer than she originally planned in part to accompany me to as many treatments as she could. She’s become one of my closest confidants and I can rely on her to be there for me in my worst moments. That’s a hard job and one that deserves applauding. But, like most things we do for the ones we love, her energy and support go largely unrewarded and unrecognized.

Cancer’s weird. It demands almost impossible things of people who least expect it. It’s relentless and unpredictable. It’s there no matter what happens, whether you have a good day or a bad day, whether you’re happy or sad. On the good days, it’s easier to forget about being sick, easier to attend to other things and pretend the cancer doesn’t exist. On bad days, it can seem to be all there is (see: anxiety). Though this sounds unfair for me, it’s even worse for those around me, who are trapped between devotion and fear. In light of this haunting, constant presence, Super Supportive Roommate’s unwavering kindness and patience seem superhuman.

I know this will end. Week 6 will become Week 7, which will become Week 8. And on and on until Week 12, when (fingers crossed) my scans will reveal that my tumors are shrinking enough to take me off the taxol. Until then, I know things will get worse. And I know the handful of people around me will continue to be there, reminding me that everything — everything beyond and outside of cancer — will be okay.

Thank you Super Supportive Roommate. You’re the best.

Tumor Markers

Thursday was my fifth infusion, which is kind of a turning point. My symptoms intensify, I lose a lot more energy, and my weight starts to drop. So, by all counts, infusion number five should be a sad day.

But Thursday brought an unexpected surprise. The week before I had asked for my tumor markers and had then forgotten to pick them up. I got them Thursday.

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For those of you who don’t know what that means (ie if you’re not an oncologist or oncology nurse), this is AMAZING NEWS. What that little, wonderful piece of paper shows is that, in the time before my first infusion and my third, my tumor markers (blood counts that measure the presence of cancer in your body, basically) were SLICED IN HALF. After only THREE infusions (the sheet, oddly enough, reads chronologically right to left). My CA 27-29 is even hovering right around normal. CEA should be closer to 0, but hell, look at that drop. I’ll take it.

This means the taxol is working, which is excellent news. If we can get rid of the tumors on my lung and liver, we can take me off taxol in July and just keep me on infusions of herceptin and pertuzumab every three weeks. That should be enough to keep the cancer at bay for awhile. And I can start feeling better.

At the same time, I know this drop isn’t permanent. On the same day that I found this news out, a good friend found out that her third chemo trial isn’t working. And that awful, humbling news is a reminder of something that you can never lose sight of when you have cancer. Cancer is unpredictable. It learns to mutate and will always come back fighting. Even women who turn up NED can die within 6 months when the cancer returns. And I say when, and not if, because that is the reality.

So this is excellent news, but it is not permanent. It does not change my prognosis, but rather gives me more good years within that prognosis. And for that I am endlessly grateful. I’m not looking to falsely believe that my life is suddenly longer, but I am looking to harvest as many good years out of that time as possible. And the sooner I can get off chemo, the sooner that can happen.

So let’s go taxol. Seven more infusions to go.

What We Lose, What We Gain

Growing up, I was a planner; in fact, I’ve always been. I carefully structured my life in terms of its payoffs — I knew I had to do well in high school to get into a good college, which would help me get into a good graduate program, which would improve my chances on the job market and give me a better chance of landing a tenure track teaching position. I’ve wanted to be a professor since I was a little girl and sat with my father in his college classes, answering as many questions as I could. Even then, I wanted to learn everything I could about being a teacher so that I could best prepare myself to assume that title later on.

I also wanted to get married, have a house, a family, children. I knew I could be a great mother; all the years I babysat and helped my parents teach RE classes at our UU church I paid close attention to the strategies that worked, what made children happy, how to keep them calm and stable. I kept all my children’s books and a few special toys, thinking I would hand them down to my own daughter someday. I was never the girl who walked around her house with a pillowcase on her head, pretending to be a bride, but I always envisioned that my focus and organization would come in handy planning a wedding. My best friend and I would sit for hours in her basement building houses with legos or drawing the best architectural plans our 6th grade minds could imagine, paying minute attention to things like the width of window treatments and how stable our spiral staircases would be.

These things and the future they gestured toward now seem almost unreal, unfathomable. My planning seems not quite in vain, but as if the ends I imagined I was moving toward were, rather than almost certainties, abstract motivations. The last five weeks I’ve had to give serious thought to which of these things are manageable or realistic given the truncated timespan I’ve most likely been handed and the shape of my life today. I’ve had to reconsider which of my goals are tangible and reachable and which would be a reach and ultimately leave me disappointed. Though that way of thinking may sound hopeless, or like I am giving up hope, I don’t believe that’s an accurate description of what is happening. Rather, I am doing my best to embody what I’ve mentioned here before — I want to be optimistic about living, but realistic about dying. And the reality is this: I have a number of spread out liver tumors, and that, when it comes to lifespan, is not good.

That process has probably been the hardest one to contend with. Giving up most of the dreams you had for yourself in one fell swoop is incredibly painful and shocking. Its effects do not register in a day, a week, or even a month. I’ll have moments when I’m sure I’ve come to terms with these realities, and then moments when the weight of my new world hits me with a force I’ve not experienced before.

A few days ago, I sat with my dissertation advisor in his office and talked about this in terms of my job prospects. He agreed with something I had suspected for a couple weeks — that a tenure track position, the goal I have always aimed for, was most likely out of the question. But, more importantly, that kind of job security, given my shortened lifespan, no longer made sense. I could be more successful and more focused if I devoted my energy to non-tenure track positions to which I could market myself with a particular uniqueness. I could say with clarity and definitiveness that I would would be committed to Boston, and so a job in Boston, for literally the rest of my life. And though I would need some moments of special dispensation, given my treatment cycle and the cancer’s growth patterns, I would always return to work.

He also suggested, in a stroke of heartwarming faith in my ability (as amazing dissertation advisors are wont to do) that I should apply for this kind of position at my current institution, if one were to become available at the right time. Though remaining at the school where you did your graduate work is often frowned upon in the academy, mine is a special situation in which such a move would not only make sense, but potentially benefit all those involved. I’ve done well by my school and they know me well; more importantly, they are intimately familiar with my work ethic while in treatment. While nothing is guaranteed, knowing that my situation is not wholly hopeless but instead opens up new ways of participating in the systems and structures I love helps me move through each day with purpose and joy.

The security of that fact is reassuring, and reminds me that, while I now face the prospect of relinquishing much of what I thought would shape my life, I am trading these things for other opportunities. And though some moments it’s hard to focus on these new opportunities and far easier to be swept away with the rush of loss, it’s also been getting easier to maintain that focus each day. I’m learning to live in the present moment with more vigor and happiness and to accept that what’s waiting for me in the future is different but not wholly bad. I’m trying to direct that happiness positively and determine what new goals would make me the most happy and are the most realistic based on the shape of today, of the now. I’m getting a horse that I know and trust and love and I want to spend at least the summer wandering around with him in the orchards behind my barn. I want to finish my dissertation — albeit a bit more slowly — with my eye on its ultimate form so that I can publish at least one book. Once I’m scaled back to treatment every 3 weeks, I want to take a trip around the West with Cheerful Outdoor Boyfriend and climb every mountain we can jump on, navigate every river we can kayak, and camp beyond the reaches of wifi and cell phones. I want to collect teapots and typewriters, live in a loft, plant another organic garden.

It feels strange to think these are my new goals, but they do give me joy. Moving forward with a truncated future means readjusting my expectations — in many ways, it means letting go of my larger expectations for the future and focusing more fully and more intently on the momentary, achievable, tangible goals that can make me happy in subtle and small ways.

Rethinking the scale of your goals is frightening, and letting go of your expectations hurts. In many ways, this process is not a fair one, but it is the one I have in front of me, and I intend to adjust to it the best I can.