2015: Looking Forward

January 3, 2015 at 5:58 pm (Personal Real Life) (, , , , )

In a weird kind of way, this is my first day of 2015. Whether it makes sense or not, my brain goes less by date than by clump- the new year doesn’t start until major events of the previous year have finished, even if it takes them a couple of extra days. So for me, today is the first day of a new year, because yesterday–with my mom’s memorial service–is still part of last year.

If that doesn’t make sense to anyone else, that’s perfectly okay. I am well aware I have a sideways way of looking at the world. It’s at least half the reason I write.

But it occurred to me, somewhere between eating cookies for breakfast and trying to decide if a migraine meant I could go to bed at five without feeling guilty, that I should probably take a look at the year ahead. In some ways, it feels like that’s ALL I’ve been doing, trying to plan, trying to guess, trying to be prepared without ever being able to pin anything down.

I guess I make it a little easier because I don’t do New Years Resolutions.

I am absolutely not out to insult or offend anyone who DOES do NYRs, I just personally find them a little silly. If I want to make a change, why should I wait until a set day to start it? Especially because there is this prevailing idea that NYRs inevitably fail, which puts a LOT of pressure on efforts. I’d rather see the need for the change or goal, start it, and do my damnedest to keep it going. So rather than set resolutions, or even goals really, I prefer to put down what I want in the next year.

1. MOVE
This is a pretty easy one, mainly because it’s happening no matter what. There’s just a lot involved in that, because I’m dealing with my stuff as well as my Mom’s stuff, and not knowing when exactly I’m going to be done with all of that makes it hard to make plans and set dates. But it does lead into

2. GET RID OF STUFF
I am a packrat. I keep things because I swear I’ll find another use for them someday, only someday never really comes along and I’m stuck hauling more and more around and never finding a place to put everything, which is the single biggest contribution aside from laziness to my being kind of a slob. It’s been in the back of my mind for months that next time I move, I am getting rid of things. Culling the bookshelves, taking a hard look at sentimental things, really whittling things down to immediately useful or extremely (and identifiably) sentimental.
I inherited the packrat tendency from my mother, absolutely without question, and now, trying to go through all of her things, I think I’m about to get a lot more ruthless in what I’m getting rid of in my own stuff. I will never be someone who travels lightly (BOOKS) but I’d like to let go of the things I’ve been holding onto for just too long.

3. GET A JOB
Aside from getting out there and applying, and making sure I put the best foot forward and all that, this isn’t something I really have control over. It is, however, a really really REALLY big desire for the year ahead. After a year of unemployment (not without its silver linings when it came to being available to my mom, but still) I would very much like to be gainfully employed again, hopefully doing something I love.

4. SELL A BOOK
Another thing I have absolutely no control over, but feeding into this is the fact that I need to write books before I can have any chance of selling them. Writing is not something that’s gone well this year, and most of that is stress and loss of focus. Normal stress, every-day stress, makes writing a relief. The monumental stresses I’ve been under this past year made me stumble, a LOT, and I have several half-finished, frustrating, curse-fostering projects to show for it. I also got a little too caught up in numbers this year. If I had a writing day that got less than seven thousand words, I got frustrated, I felt unproductive and disappointing and kind of a waste of space. Yes, I realize I was being too hard on myself, but I felt like when everything else was spinning or had spun out of my control, I should have been able to keep control of this one thing. It’s BS, of course. but that doesn’t change anything about how I felt then. I wanted the staggering numbers of stickers on my calendar, the rows of pretty numbers on my tracksheets, so I could feel like I was at least accomplishing SOMETHING.
So, along with pulling my focus back in, I also want to shift it a little. Rather than worry about word counts or defined productivity or how quickly I’m finishing a draft, I want to dwell on the story and characters, letting the project tell me when it’s had enough for the day–or when I’ve had enough for the day. I’ve been doing this with my current project, and it’s amazing how much it’s helped. Even though writing days have been few and relatively far between in the past few months, I was okay with myself if I only got one or two thousand words down in a day. As long as the words were honest, and didn’t feel forced, I was happy. And I learned that sometimes, despite knowing what happens next and maybe even knowing how to tell it, I just have to back away from a scene for a bit. I don’t know yet if that’s going to become universal or if it’s just this project–this one is intensely personal and emotionally difficult, so I don’t know. But I don’t feel like a quitter or a failure when I close the computer after seven hundred words because I need a few more days before I can write That Scene.
Numbers in publishing are really hard, and really painful, and it’s easy to lose yourself in them at the expense of your writing. How many books have I sold? How many rejections have I gotten? How many projects have I gotten out there? I added a lot of unnecessary stress to myself this year freaking out that I haven’t sold another book yet, terrified I’m going to be a blip on the shelves with one small easily overlooked book. I dwelled on that thought A LOT, far more than was healthy, and I know it’s because this is something I’ve wanted very badly for a very long time, so it had a lot of oomph behind it. I need to let that go. It will happen, or it won’t. The best (and the most) I can do is continue to write and craft and improve.
Here’s my sucker punch, though: I would really like to sell another book for my mom. I think that was one of my biggest whips through the year, this desperate desire to sell another book while my mom was still alive and lucid to know it, so she’d worry about me just a bit less, knowing I’d be a step closer to a career. I am someone whose beliefs mean that I believe my mom is still watching over me, still aware of my life and its successes and failures, its good times and bad times. My mom will know if it happens, and if (or when) it happens, she’ll celebrate with me, but it won’t be the same. I had really wanted her to KNOW, where I could see the relief on her face, that she didn’t have to be scared to leave me. It’s another thing I need to let go, but that one is harder.

5. READ 100 NEW BOOKS
Re-reading is my security blanket. I have favorites that I re-read time and time again (and am, in fact, in the middle of one of those trilogies now!), and my favorite comfy snuggly must have at slumber parties pillow is fanfic. They are my creature comforts, my de-stressors, my safe places. But I need to deal with stress better this year, and hopefully it won’t be nearly as overwhelming, so I would very much like to read a crapton of new books (okay, actually a hundred, which is far less than a crapton). And by new, I simply mean books I haven’t read before. Brand new releases, yes, but also the books that have been sitting patiently on my shelves waiting for me to get to them. Part of getting rid of stuff means culling books that I have to honestly admit I’ll never get to, or just don’t have an interest in getting to anymore, but there are so many books on my shelves already that I really WANT to read, and so many good ones coming out, that this is my goal. We’ll see how it goes.

6. BE OKAY WITH NOT BEING OKAY
This is the biggest one, and by far the hardest. I’ve talked before (I think I’ve talked before) about the fact that I have recurring clinical depression. It’s not chronic, for which I’m very grateful, but it’s something I have to always be aware of. I have to monitor my moods and my actions so that I can identify when I’m having trouble. Admitting that has never been a problem, for some reason. I never felt ashamed to say that I was struggling with an episode. I don’t know if it’s because I didn’t have the perceived stigma of medication (because, with the full support and conversation of my mother and my psychiatrist, I felt that wasn’t the best path for me), or because I was dealing with it and anyone who had a problem with it could go screw themselves.
Grief and stress, though, are really powerful triggers to my depression cycles. I know this, and that’s one of the major reasons why I re-read without guilt, because it helps, but grief and stress have been unavoidable this past year, and they’ll be unavoidable this coming year. I’ve been extremely (probably unheathily) focused on being strong. Don’t break down and put extra burdens on Mom, on the family, on my friends, on the random people who ask for updates. For a while, I could go home and close the doors and just break down in private, but eventually that started to feel self-indulgent, and there were bigger more important things that needed my attention an energy (totally not true, by the way). I’m starting to realize that a large part of my focus on everything that needs to get done is because it keeps me too busy and too tired to feel everything else.
Because if I start to feel all that weight, that crushing loss and bewilderment and anger and fear and all those things that go hand in hand with illness and death, I’ll never get out from under it. (Also not true) If I stay busy, if I don’t have time even to think, much less feel, then the grief and stress can’t latch onto the depression and breed. And like I said, it’s absolutely not true. It’s not just something I know, it’s something I can feel. Right now, no matter how much sleep I do or not get, I’m the same degree of exhausted. For me, that’s one of my more obvious warning signs. It’s also one of the early ones.
Before this terrible year, I was okay with not being okay some days. The cycles happened, and I could accept that and take care of myself until the cycle had passed. I really, really need to get back to that. It’s important for me to remember (for everyone to remember) that depression is an illness, not an affectation. Some days are ALWAYS going to be worse than others, sometimes by triggers, sometimes simply by chemical imbalances. I need to let myself have those days to really take care of myself, before this becomes a much bigger, much more complicated problem.

So, not resolutions, really, and in some cases, not even really goals. I don’t know what 2015 is going to hold. Changes, yes, some of them really massive and exciting and painful, but I very much hope that what I can do, I will, and what I can’t, I can let go of.

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We Are All Dead, Not Dying

December 27, 2014 at 11:58 pm (Personal Real Life) (, , , , , )

On 4 May 1991, Star Trek: The Next Generation aired episode 4.22, “Half a Life”, guest starring David Ogden Stiers as the aging Timicin, a scientist dedicated to finding a way to restore his planet’s dying sign. The science would have been fascinating enough, but in the tradition of the classic Star Treks, the episode tackled much more difficult questions and issues. In so doing, they did something rather rare, not just for a television show, but in life.

They asked about dying.

Timicin’s people have a practice called The Resolution. At the age of sixty, a person’s family gathers for time together and a farewell, and the newly-sixty-year-old kills his or herself, offsetting the infirmities of greater age, the loss of the sense of self, and relieving the burden and strain on families obliged to care for those who can no longer care for themselves. This is something in which Timicin has always believed, even as he nears his own sixtieth birthday, but under the dual influences of an unsuccessful attempt to save his sun and the passionate, defiant, acknowledges no obstacles love of the inimitable Lwaxana Troi, Timicin begins to consider a life outside of that tradition, where he might be free to continue his work and live his life.

Also in the tradition of the best episodes in this and the original series, they don’t try to answer the questions. Rather, they admit, openly, perhaps ruefully, that the issue is never as simple as yes or no, or right or wrong. They ask the question and let the characters explore that dangerous, bewildering, sometimes polarizing intersection of perspectives. I always loved this episode, but lately it’s taken on new meaning for me.

Because we as a culture don’t really talk about dying.

Death, yes, we’re all obsessed with death, but only when it surprises us, in a way. We talk about murders, about accidents, about natural disasters. We talk about death toll, and once it reaches truly epidemic proportions, we can even bring ourselves to talk about disease. It’s like we all ascribe to this James Dean sort of immortality: unless we’re taken out, we’ll live forever.

We don’t, of course, but we don’t talk about that. We fill ourselves with death as the unexpected, leaving no room for the everyday sort of things. We rattle off statistics, and despite the astonishing number of life insurance commercials on the television, we don’t prepare for things, not really, because no matter how old or young we are, that’s never going to be us. So we’ll talk about violence from people, from animals, from nature, because it can always surprise us. We’re obsessed with death, but we’re never dying.

Except, of course, when we are, but we don’t talk about that.

We don’t talk about the slow, unsteady decline unto death, the gradual and inexorable loss of self and vitality. We don’t talk about what disease actually does to a person, to a family.

We do fundraisers for cancer research, treating it like it’s any enemy to be defeated, using strategically chosen poster children to create a sense of community or empathy, but it’s only ever as an abstract. Because cancer is depicted in our culture as something that can be beaten, we expect strength and grace and dignity and endless optimism from those who’ve been diagnosed with it. Chin up, soldier, and fight, you’ll get through this. We buy into the commercials that tell us beating cancer is as simple as finding the right doctors, the right treatment centers. We don’t buy into it because we’re stupid (or at least not entirely) but because that sort of relentlessly ignorant optimism is part of our cultural obsession with being vibrantly alive until suddenly we aren’t.

We don’t want the truth about suffering. When we ask someone how their treatments are going, we want to hear “Oh, they’re just fine. You know, I really think they’re working!” or “I’ll be cancer-free in no time!” We don’t to hear about the side effects from the chemotherapy a/o radiation. We don’t want to hear about surgical complications. We don’t want to see the pharmacy of carefully measured risks and interactions spread across the counter, hoping the effects will be more than the averse possibilities. We don’t want to hear about vomiting or dehydration, or being unable to eat. We don’t want to hear about weight loss or hair loss or the ability of cold to make you lose sensation in your extremities. We want our poster children to be brave and bright.

We don’t want to hear about the countless people left abandoned or neglected in sub-par nursing facilities as their needs outstrip the ability or willingness of their families to care for them. We don’t want to hear about the families struggling to keep their loved ones at home through increasing infirmities. We want to hear about our senior citizens doing extraordinary things–being active! Iron Man Nun! We went boating, biking, digging for dinosaurs, whatever the commercials are selling–so we don’t want to think about the inevitable decline of the body. We don’t want to think about the body as a machine that will, no matter we do, one day simply run down and stop.

We don’t want to think of dying as a process.

We don’t want to think of dying as something we can’t stop.

So, culturally, we don’t. We shield ourselves with the unexpected, the unpredictable. We comfort ourselves with sudden, with random, with malice.

We don’t talk about dying.

But we talk about death.

My mother died on Christmas Eve.

She was diagnosed with cancer in May 2013, with what the scans showed to be a very small, isolated cluster of tumors. Surgery showed us it was anything but. The pathology report, however, the thing that would tell us exactly what we were dealing with, took longer than usual to come back. In fact, it wasn’t until I was at BEA, a couple of hours after my ARC signing, that the results came back. My mother had a very rare form of cancer, hence the extra days–the pathologists weren’t entirely sure what they were dealing with, so they had to check with others.

In treatments, most oncology centers lump cancer of the appendix in with colo-rectal and other GI cancers, largely because they don’t know what the hell else to do with it. It’s not a GI cancer, and it doesn’t respond or behave or grow like a GI cancer, but they treat it like one anyway. It’s probably not a shock that these treatments don’t have any inspiring results.

The last time I openly talked about my mother’s cancer, we were headed down to Daytona for a surgery that could have been the miracle we were hoping for. It’s a surgery specially designed for THIS type of cancer by a doctor who specializes in rare cancers, but there’s a narrow window for candidacy. Mom’s scans looked beautiful. Opening her up showed a rather uglier picture. There was far more cancer tissue than the scans had indicated–two to three hundred times what was expected–which meant the procedure couldn’t actually proceed. Our miracle surgery was a failure.

The cancer was going to kill my mother.

Really, it was just a question of when. Despite chemotherapy having shown no signs of slowing the growth of tumor tissue before, it was hoped that changing chemo agents (still GI agents) would at least slow or maybe even contain the growth. My mother’s life would revolve around treatments and side effects, but she’d be alive, and for some people, that’s enough. Some people want all the time modern medicine can give them. Some people want to accept the days left to them and live comfortably, doing they things they want done so they leave nothing behind.

But we don’t talk about dying, and that’s really a terrible thing, because as members of our particular cultural peculiarities, we don’t really have any idea how to approach dying.

We don’t talk about Hospice, or just how amazing a thing that really is. It’s always surprised me that so many people don’t seem to know anything about it, and I was never sure if that was because my mom used to be a Hospice nurse, or if it was because I was a broken child obsessed with dying as equally as with death. Hospice began as end-of-life care in oncology wards in England. When the other doctors gave up on patients, when there was no more cure to be sought, they were just left in corners of wards and forgotten, left to die. The amazing Dame Cicily Saunders made it her mission to make their end of life more comfortable. Where the disease or the decline could not be conquered, she sought to alleviate their symptoms. Eventually this spread to the United States. Today, Hospice serves all end-of-life care, not just from cancer. They work in hospitals, in care centers, and in the homes to assist patients and their families. In additions to doctors, nurses, and nurse practitioners, they have cadres of social workers and chaplains to provide emotional support and resources, as well as an incredibly active volunteer horde to assist in innumerable ways. If you are looking for an assisted living community then check out these assisted care home community topics.

We don’t talk about the mindset and clarity–and acceptance–it requires to actually make plans for your death and after. To talk with family members and friends, to make arrangements. We talk about the five stages of grief, but only after death. We never talk about how it can start long before the moment of death. We don’t talk about fear or denial. We don’t talk about the frenetic push for things to do, just to pretend that our end isn’t looming.

It’s not about religion or faith, at that point, or any sort of belief in what does or does not (or may or may not) come after death. Fervently faithful people can still be afraid. People who believe, passionately and whole-heartedly, that death moves them to a better place, can still not be ready to go.

We don’t talk about caregiving, not really. In commercials, sometimes, for nursing agencies, but even those are full of crap. The commercials, I mean. They show gracefully aging seniors being assisted in normal activities by smiling, uniformed people, and sure, sometimes caregiving is cooking a meal or helping to clean, but that is such a tiny, tiny piece of it. Caregiving is riding the emotional extremes of the person you love, and not being able to ride out your own, because your focus is so entirely on the other person. Caregiving is doings things it never even occurred to you might be necessary. It can be giving rides and doing the shopping, but it can also be helping someone use the toilet or take a bath.

Caregiving can be learning every single medication and what they do and when they can be taken and what are the side effects and what can be taken at the same time and what has to be separated and what are my options if she throws this back up? Caregiving can be pretending you’re not gagging when you need to measure the color, consistency, and volume of a bucket of vomit as you’re also making sure there isn’t any undissolved medication in there. It’s talking to doctors and nurses and trying desperately to make sure you understand everything. It’s being snapped at and having to remind yourself that it’s the fear and the pain, not the person, saying these things.

Caregiving is hard. It is hard and it is exhausting and it is emotionally, mentally, and physically draining. It is the single hardest thing I have ever done and, God willing, the hardest thing I will ever have to do, and I was far from alone while doing it. But because we don’t talk about dying, or about Hospice, or about caregiving, we deprive those caregivers of really important support and resources to be found in Hospice.

We had that support. My mom entered Hospice at the end of September, after two hospital stays and the realization that her chemo was actually causing life-threatening problems. Chemo came to an end, and the focus switched to pain and symptom management. Accepting that you need Hospice, though, is not the same as accepting you’re dying.

It’s incredibly difficult to talk about dying with someone who refuses to accept that they are, and nothing in our culture prepares us for that.

Our culture thinks people who accept death and dying are weak, somehow, like they’re traitors for not fighting and denying and burying ourselves in a perceived immortality.

My mom vacillated wildly between denying her impending timeline and morosely drowning herself in it. And that’s normal, sadly, and difficult, and painful, for everyone connected to it. Her doctors told her to gather the family and have an early Christmas, and at the beginning of November, we did. We had Thanksgiving a few weeks later. My brothers came down on more weekends than they ever had before. Some days it felt like the house had a revolving door, there were such constant streams of visitors, overlapping each other.

As her symptoms got worse, the medication got higher. A LOT higher. My mother–an incredibly active woman who used to run COPE courses and lead Boy Scouts on hikes and camp outs–was increasingly confined to bed. We had to get a wheelchair for the few longer outings she could still tolerate, like the giant craft fair she and I have gone to together every single year as our one big Mother-Daughter tradition. After getting called at four thirty in the morning because she’d fallen and cracked her head and was unresponsive, we had to get her a walker, and then hound her endlessly to use it, because it’s one thing to know, in a professional sort of way, that your body just can’t do this anymore, and completely another to obey it, to accept it. More and more, we had to help her with medications, and with using the bathroom. When the narcotics and relaxants were at their mega-doses, and she was rather less than cognizant, we had to make sure we repositioned her fairly regularly, so she wouldn’t get bedsores. We had to repeat conversations, and try to parse through the confusion and aphasia that wasn’t entirely the fault of the morphine. As we tried to start making arrangements for After, we had to accept and try to work around the resistance, the insistence that it wasn’t necessary.

My mother fought like hell against something she couldn’t ever hope to beat, and she fought right up until her last breath at 10:25 pm, Christmas Eve. And I have to wonder: if we a culture were more open about dying, would she have fought so relentlessly?

Because that’s our other myth about dying. When we can accept that it happens, when we can somehow manage to work against the prevailing atmosphere in order to talk about it, we have this image of serenity. Surrounded by loved ones, the dying person smiles, closes his or her eyes, and simply lets go on a seraphic sigh, all peace and grace and dignity.

I hope I never again have to hear the sounds my mother made as she struggled to keep going. We clustered around her, holding her hands, touching her, telling her it was okay, we were okay, she could just let go, because we could see how anxious, and restless, and miserable she was. She wasn’t responsive by then, but still fighting like hell against a force that was always, always going to win. We tell people to make the most of life. We tell them to fight, we tell them to cling, we tell them to always focus on how much we have left to do.

So we don’t talk about making your peace with what you’ve done, and what you will never do. We don’t talk about letting go.

Through that silence, that willful ignorance and relentless optimism, we hurt not only ourselves but our loved ones. We, as a culture, cannot handle dying.

In “Half a Life”, Timicin’s people came up with The Resolution in an attempt to be humane and compassionate, to spare themselves the indignities and infirmities and decline. They did it as a way for families to come together and make their farewells, to leave nothing unsaid. They did it as a way to meet death with dignity. We see a number of perspectives in what follows, and they’re paralleled in real life by all the arguments surrounding physician-assisted suicide, and extended into the debates about living wills and do-not-resuscitate orders. The conversations are only half-formed, though, because we refuse to talk about them in practical measures. The ideas, the concepts, the abstracts, those we can discuss. The ethics and philosophies. Faced with the reality, though, we turn away.

We’re all dead, but never dying.

Timicin makes his choice in the fiction, and my mother made hers in real life. Neither was easy. Neither made their choice without doubts.

My mother was a pretty amazing woman. She was a dedicated nurse and Navy officer, and her three favorite areas of nursing were neonatal, Hospice, and teaching. The full spectrum of birth to death. Despite working insanely long hours at most of her jobs, she was involved in all of our activities. Church, choirs, Youth Group, Sunday Schools, Bible studies, soccer, baseball, drama, dance, French club, competitions and field trips and projects. She started a Boy Scout troop and led it for ten years, one of the first female Scoutmasters. She faced derision and insults and sabotage, having to stand in a line across from entire troops of boys and adults chanting “No women in Scouts!”, and rather than return insult, rather than succumb to indignation or hurt, she and her troop won the campwide Spirit Award, and she carved out a name for herself in the Council as a Scoutmaster whose Eagles truly earned that distinction. She also started a Girl Scout troop, and there was very little more funny than my sleep-deprived, caffeine-deprived mother teaching a group of eight-year-olds how to make campfire coffee simply because she was going to scream if she didn’t get that black elixir. The Boy Scouts similarly learned not to approach her until she’d had her first cup of coffee. Preferably the second, maybe even with the third in hand.

My mother spent one Christmas Eve with a flashlight in one hand and a golf club in the other because the snake my brother was baby-sitting got out of its cage.

She spent another in the emergency room, after my Advent candles set a portion of the furniture on fire.

Christmas was really her Thing. The tree was always perfect–not in the showhome kind of perfect, but in the sense that chaos came together to really mean something. We had store-bought ornaments, some because they were meaningful and some because they were pretty, and we had craft-fair handmade ornaments, but our tree always had more clumsily or beautifully hand-made ornaments that were family. And Mom was the only one allowed to put on tinsel. The rest of us would toss it on, letting it fall like flurries of snow, but she’d place it strand by strand on the branches. The presents she wrapped were works of art. Baking smells filled the house, and then later there’d be cooking smells, too, and all of it wonderful. And there was music. My mom had an incredible voice, and every year during Christmas Eve services, she sang “O Holy Night”. One year (the year of the fire) we found an incredible dress shirt with a glittery tree and cuffs (and it was actually a beautiful shirt, even though it sounds like anything but), and as she sang, she’d lift her arm, and the lights would spark off the bit of cuff that came out of the choir robe, and it was like she had her own halo. I sang that song at other services some years, and other songs during others, but even when I sang it, it was still Mom’s song.

My mother was passionate about education, both receiving it and giving it. She believed fervently in continuing education for nurses, and was most of the way through a Masters program to become a Family Nurse Practitioner when she was forced to take a medical leave of absence. She was a teacher, both in profession and in spirit. She passed a thirst for learning on to her children. And she was a caregiver. It wasn’t just a job, it was a vocation. A calling. She was fiercely proud of us, even when we made mistakes. It got a little embarrassing, sometimes, that everyone she talked to just HAD to know that I’m a published author (and here’s something I never thought about with publishing–just how freaking hard it is to write an inscription to your mother!) but she was just that proud of me. My brothers, too, even when we struggled to find a path or stick to a path or just plain make the path work.

She had her faults, of course, and I was by no means blind to them, but at the end of the day, I was lucky to have a mother who was both my mom and my best friend, but always my mom first. The past nineteen months have been hellaciously hard and painful, but even at its worst, there has never been a point when I haven’t been grateful that I got to be here with her and for her. Even being unemployed for year, which otherwise sucks, seemed like a gift, because it meant that I got to be there, and as things declined and that became a necessity rather than simply useful or indulgent, I didn’t have any obstacles preventing me from being where I wanted and needed to be.

My mother didn’t die peacefully or gracefully, she died fighting, and our culture says we’re not really supposed to talk about that. If it doesn’t fit into our myth, it’s supposed to be left alone, because death should always be something unexpected. Death should always be something we can’t fight, so that way we don’t have to face what happens when we lose.

But my mother raised me to talk about it, so I am. We all make our choices, but by choosing to talk about it, no matter how hard or painful or impossible it is, I’m choosing not to be afraid of it. We will all be dead. We are all, little by little or step by hurtling step, dying. We don’t have to live our lives in spite of that. We get to live our lives with that, knowing that there is an end to all things, that we belong to a natural order in which death and life are intertwined. We get to exist in this miracle we call life.

We just need to start accepting all of it.

Katherine Ann Hutchison 9.1.1952-12.24.2014

Katherine Ann Hutchison
9.1.1952-12.24.2014

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Cancer Needs An Ass-Kicking

February 15, 2014 at 5:59 pm (Personal Real Life) (, , , , )

Let’s talk about cancer, and about moms, and about moms who have cancer. Specifically, let’s talk about my mom.

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Last April, my mom started having some abdominal pains and bleeding, which might have been easy to explain if she hadn’t stopped that process a few years ago. (Ladies, if you notice anything weird going on with your lady-parts or lady-cycles, see a doctor. Better a false alarm than missing something. Actually, that goes for guys, too. True self-love is checking to make sure all your junk is healthy) A scan showed some shadows on an ovary and a mass behind the uterus. The cancer markers on her blood test were low, so there was a possibility that it was benign. If it was cancerous, they were pretty sure it was ovarian, slight chance it was uterine, and they were pretty sure they’d caught it early.

But, when they went in to remove the questionable bits, they found a very, very different story. They found cancer tissue across her ovaries and uterus, across her bowel, and through her lower abdominal cavity, including wrapping around a few blood vessels. They got out what they could, which necessitated losing some bowel, and sent it on to pathology. My mom’s surgery was near the end of the May; I spent the School Library Journal Day of Dialogue and most of my day at BEA waiting very impatiently for the path report. Not that I was going to be able to do anything from New York (or do anything, really), but not knowing was awful, because this was so clearly not what they were expecting. We’d been expecting the report for days, and every day that passed without a response just made it worse, because it had to mean that it was more complicated.

And it was. What they found was advanced cancer (Stage 4) originating in the appendix. Appendiceal cancer is rare; there have been less than two hundred documented cases since it was first diagnosed as a separate and distinct cancer in 1969. Because of its rarity, treatment options are…limited. Limited and still largely experimental, lobbing chemo agents at it and hoping it works. Chemo couldn’t start until she was fully recovered from surgery, which took a while, because it turns out when you lose portions of your bowel, it makes little things like eating a very chancy business.

My mom was, at this time, enrolled in an online graduate program to become a Nurse Practitioner. Grad school has been a dream near and dear to Mom’s heart for a long time. She was enrolled at UF when we first moved to Gainesville in 1990, but she got recalled to active duty during Desert Storm, and was gone for almost a year, and then becoming a single parent meant that grad school had to wait. And wait. And wait. When she finally got the chance to investigate online programs, we crossed our fingers. When she actually got to enroll, we were ecstatic. The program is hard. It’s meant to be done by professionals working full-time, but you would never know that based on the deluge of assignments and impossible class times. She worked herself to the bone while she was still working. Fortunately, she was eventually approved for a grant that allowed her to leave work and do school full-time. It meant things were tight, but it also meant school was doing well.

UNfortunately, once she started chemo, school got harder and harder to keep up. Chemotherapy essentially poisons your body; it’s why the side-effects are so terrible. You’re literally pumping toxic chemicals into your body in the hopes that it kills the cancer before it kills you. She grew extremely fatigued, couldn’t focus, got extreme sensitivity to cold from both taste and touch. She couldn’t walk barefoot in the kitchen without loosing sensation in her feet. She couldn’t pull things out of the fridge or freezer, couldn’t drink anything that was even cold, much less containing ice. Her potassium levels started tanking (which is, among other things, very bad for your heart). As tired as she was, she also suffered from insomnia. Nausea and vomiting came in waves, and the complications from the surgery meant she developed Short Gut Syndrome. She lost weight at a dangerous speed. And there were other side-effects. Eventually, it reached the point where she had to take a medical leave of absence from school, which was a devastating personal blow. She was later able to return to her old job, which was fortunately willing to be flexible with the hours and her needs, but school is such a deep and driving dream for her.

So why am I telling you this?

At the end of the month, my mom will be going into surgery again, a couple hours south of home. There’s a doc in DC that specializes in developing treatments for rare cancers. This protocol he’s developed, which other doctors also perform, is an aggressive combination of a long, intensive surgery and directly-applied chemotherapy. The side-effects of a direct-application chemo wash are significant, not to mention the incredible strain on the body that a long surgery produces. Provided all goes well, she’ll be in the Intensive Care Unit for several days, and then on the main surgical floor for two to three weeks (also provided all goes well). It’s an aggressive procedure, but it has a decent success rate, and if it does work, it has a significantly higher quality of life standard than continuing traditional chemo, which has thus far prevented new growth but not diminished old growth.

And we have no idea how much it’s going to cost.

Thank God, she has insurance through her job, but we don’t know how much it’s going to cover. We heard back from the office of the doc who’ll be doing the surgery, so we know things are covered on that end, but the hospital is a completely different story. Right now, her two-person household is a three-quarter income household, and once she goes down for surgery, she’s not going to be able to work until she’s fully recovered. She tried to make arrangements to work from home, and the doc was certainly willing to sign off on it, but the confidential nature of the work she does makes her employers unwilling to make the arrangements on their end. She has insurance, but no sick time. Some of her co-workers even tried to give her some of their sick time, but no dice. Her job will still be there when she gets back (and even that is a small miracle) but for the duration of her recovery, both in Daytona and here, there’ll be no income.

My mom was lucky enough to form an incredible study-group with some of her fellow Hoyas, and they support each other like you wouldn’t believe. Her phone is always going off with texts, and they moved from study-buddies into genuine friendships. When she had to take her medical leave, they kept her involved in classes by asking for her help editing papers, or helping them go over tests. When the rest of the group had to head to DC for an on-campus intensive for clinical skills, they printed out a picture of her from the previous OCI and Flat Stanley-ed her. They took ‘her’ along with them to clinicals, to meals, to drinks, to the hotel, out on walks, everywhere, and sent her pictures. They’ve committed themselves to helping her study when she comes back from medical leave, and if the procedure is successful and she’s able to join back in summer or fall semester, she’ll actually be able to walk at graduation with them next year.

And they’ve started a gofundme for her medical bills. Cancer is a debilitating disease–physically, mentally…and financially. It’s easy to say to ignore the money and focus on getting better, but that doesn’t work if the money ISN’T THERE. There’s only so much you can put on credit cards before you reach your limit, and all the well-wishes in the world don’t pay the rent.

I’m not really one to ask people for money, largely because I know better than most just how tight money can be. I live well below the poverty line, and am currently unemployed. The one advantage to that is that I can be down there with her at the hospital. But..I am asking. Politely, and with the complete understanding that money is tight, I am asking. If you can give anything to this fund to help my mother pay her medical bills and keep a roof over her head, even just a few dollars, THANK YOU. If you can’t give financially, you can still help by boosting the signal and sharing it with others, and THANK YOU. It’s funny, you’d think I’d be pretty good with words given the whole writing thing and all, but words really can’t express how grateful I will be for ANY help than can be given.

Again, here’s the link to help my mom hopefully kick cancer’s ass and still have her life to come back to when she recovers.

For any donation, for any share, for any signal boost, THANK YOU.

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