2014 Wrap Up Post

So I haven’t been the most diligent of bloggers. This year has been one of the most challenging to date, in terms of keeping up with…everything. Even now, on my messy desk, I have a stack of paperwork for my job, on top of a stack of paperwork for home, and sandwiched inside is a folder of medical paperwork that needs my attention as of last week. Some holiday gifts are still not wrapped and mailed, while others still have not been acquired. Even in writing this, I am not giving attention to other things that are nagging me to be done.  But this wrap up of 2014, it too deserves my attention as much as anything else. I tend to not discuss my deeply personal life in this blog as much as my Dreamwidth account, which is viewable only by a select few friends, but it’s worth a synopsis here, I think.

In February 2013, my husband and I returned to our home town to live, so that I could be part of a phase II clinical trial of a potential cancer treatment. My particular cancer is rare, and apart from surgery and radiation therapy, does not have a reliable systemic treatment (i.e. Chemotherapy). Memorial Sloan-Kettering Cancer Center in NYC has in recent years been doing a great deal of research on this rare cancer, which is a rare thing in itself. There isn’t a lot of funding and focus on rare cancers; everyone is interested in saving boobies breast cancer I guess. At any rate, MSKCC has been doing trials. In 2013, I was going to be a part of that. But it fell through, thanks to some strict guidelines in the trial protocols and a couple of teeny active tumors that chose that moment to pop up on my spine. Instead of the trial drug, they decided to try a traditional chemotherapy, normally given to people with lung cancer, because the troublesome metastases are in my lungs (which can’t be treated with radiotherapy. Radiotherapy requires being perfectly still, and lungs generally need to move or you’ve stopped breathing). The chemo did nothing, however, except greatly thinned my hair and made me nauseous.

So we changed tactics. A new clinical trial was in the works, but before I could get in it, we needed to halt the progress of the growing tumors on my spine. In January 2014, I had intense radiation to my lower thoracic spine. Then, in April 2014, after much debating about how to go about it (because of prior treatments to a nearby site from years ago), I had more intense radiation to my cervical spine. Those treatments seemed to work with great success, though it left me with “defects” as they called it. Mainly I have what seems to be permanent tingling and decreased proper sensations in my right hand/arm. I say “seems” because some days it also seems to improve. They tell me this implies it’s directly related to inflammation caused by the radiation, but no one seems to know when that inflammation will recede. I am on a steroid regimen to combat it, as my adrenals aren’t creating the right hormone on their own to do it at this time. Attempts to take me off this regimen have resulted in extreme back pain, loss of motor functions in my hands, and at its worst, inability to walk without support.

Much of 2014 has held my focus tightly upon managing this pain and other defects. But it has also been the year I finally started a clinical trial, and one that appears to be working. I began taking Regorafenib in early May 2014, at the highest dosage recommended, and though at times I didn’t think I could continue due to the side effects, I persevered and gradually, those side effects grew more tolerable or just faded away. Sort of like my hair. *grins* *tucks remaining thin strands back under hat*

As of this writing, I have just started my 9th cycle of the treatment. My scans have consistently showed the lung mets as either stable or shrinking, albeit slowly. The doctors are also excited that many of the lesions that remain on my spine are also showing the same behavior, including ones that were not treated with radiation. For some time during the past year, I was ready to give up. Or if not ready, at least pondered what that scenario would be like. I had some dark days and nights.

Through all of this, I’ve continued to work full time in my administrative job. I have worked remotely (i.e. from home) either partially or completely since we found out my cancer had come back and that it was going to be a long painful process to get it under control. When I’d proposed to my employer that I should continue to work for them even from another state, I was taking a big chance that they’d refuse. But it’s been almost 2 years now and so far I haven’t heard any complaints (even if I do suspect the occasional resentment from co-workers). I am always reminded how blessed I am. To have to leave my job now would be financial ruin unless someone local was willing to hire me, knowing that I absolutely will be taking sick days often for doctor appointments or even because I simply can’t find the energy to leave the house that day. Chemotherapy, for many, is exhausting. Your body is working very hard, even if it doesn’t look like it.

The other big event of the year was our move into a house. My husband and I stayed with his parents at first when we got to Pennsylvania, but quickly realized we needed to find our own home. His parents are wonderful people, but their house is not big enough to accommodate 4 adults for longer than a weekend. Between varying work schedules, surprise home improvement projects (e.g. Suddenly broken shower in the master bath meant we were all trying to use one bathroom), and even major differences in dietary needs led to too many conflicts to maintain a healthy relationship between everyone. When a tiny efficiency apartment opened in the building my in-laws own, we moved into that for the time being until something else came along. Meanwhile, my husband secured full time work and got himself established there before we started home hunting in earnest. So when a great little house turned up in a casual search one weekend, we were ready and looked like great candidates. Great enough that the owners were excited to have us, since this was their first time being landlords. The home is very small, but affordable and gorgeous, and on a large enough lot to be far from the neighbors. We were even encouraged to dig a garden if we wanted to do so. A perfect match.

And so here it is, another New Year. There are dozens of dark-eyed juncos, several cardinals and even a huge woodpecker pecking at the seed that I’d sprinkled about in the snow and on the feeder outside my living room window, while I sip tea and listen to the whir of the auger in our pellet stove that keeps the whole house toasty warm. I’m thankful for that stove, because it has been a very cold week, after the very mild December we just had. And I’m thankful for the birds, for this house, for modern medicine, for generous in-laws, for gracious employers, for cold winters and beautiful places to live.

Posted in health, hometown, Ruminations

My cabin in the Woods

photo by: Brian Stansberry / Creative Commons

photo by: Brian Stansberry / Creative Commons

I had this dream, some time ago, when I was still reading a particular author’s blog* wherein I saw said author on the front porch of a large cabin, which had a really tall set of stairs leading up to it. Like a sort of huge stage or platform (I suppose this is pretty on the nose, as they say). And I was standing on my own front porch, which was at ground level, a bit hidden back in the trees. A crowd of people had gathered and were waiting for the author to speak, but some hikers walking through the area paused and looked at me, rather than them.

And I realized then that I was perfectly happy with that.

I’m not a published author, and I don’t have a brand to promote. I have thinky thoughts about certain things, and I like to put words together in (hopefully) interesting ways. I enjoy the freedom of saying them without holding back what I really want to say. I know I don’t get into controversial stuff too much, but when you have a “brand” or are attached to certain entities (e.g. SFWA, a publisher, a school, a governing agency) you either censor yourself (consciously or otherwise) or else get those entities caught up in your bullshit. I like being a free agent, with my own agenda and not beholden to another. I sometimes wonder if that holds some of us “aspiring” authors back from trying to gain mainstream publication. Not necessarily being enamored of the whole self-publishing movement, but rather, not wanting to hand over that little bit of rebel in us. The one that says what we mean, regardless of whether it’s going to gain unpopular attention. The one that doesn’t want to sign up for owing the next book to the publisher on a schedule because maybe we prefer to do it part time; or have other commitments which are important to us; or because we write slow and we watch trad published authors frantically trying to meet deadlines and think “no thanks!” Maybe at heart, we’re still that punk kid wearing black and drawing anarchy symbols on our textbooks, sleeping late if we are able, and giving the finger to whomever we perceive as part of the Establishment.

I can hear some folks now: “You’re making excuses.” “You’re not a real writer.” Here’s where I get to say what I want: fuck off if that’s what you think. There is no such thing as a “fake writer” and of course they are excuses. They are perfectly valid excuses. The whole “you’re making excuses” thing is what we do when we want to feel superior to someone else for whatever reason, despite the fact that we ourselves probably have some other horrid habits that just aren’t relevant to this discussion. We’re not superior, any of us.

The author who appeared in my dream was another in a long line of authors who, at some point in their career, made proclamations from their pulpit about what makes someone a writer, and the whole “you’re just making excuses” if you for any reason do not write every day while saying you want to write. Some days? I’m trapped in an MRI machine for a couple hours, but apparently I should find a way to write while in the waiting room. Sometimes, my hands don’t work, but I guess I’m supposed to invest in speech-recognition software or else it’s just another excuse. Bullshit.

I give props to commercial authorship, to producing books for a market that demands them. But I think there is still room for people who take their time crafting something beautiful and artful. If it isn’t on the NYT Bestseller list, who the fuck cares? Make good art. It can still be secondary that there is some humongous audience for it. There is room for this. So what if only a few lone hikers passing through the woods are the ones who find your little cabin. If what you have to say is beautiful, meaningful, insightful, I believe that is worthwhile too.

*-The name of this author isn’t relevant. And I don’t read them anymore, now that I’ve stepped back and come to understand their formula of posting something political whenever their stats are down, just to build page views, while crowing about being an ally to the marginalized. Or being contrite about their privilege as a means to show how concerned about the marginalized they are, which only gets attention because they are privileged. And the marginalized continue to feed this person’s admitted ego.

Posted in Ruminations, writing

Breathe

Breathe in, the pre-recorded voice instructs. Hold your breath.

There is a whirring sound as an x-ray source spins around you, inside the detector ring of a CT scanner. The table you are stretched out on moves on its track. Your arms are above your head, hands resting on a pillow where the technician had gently arranged them before retreating from the room. The barium shake you forced yourself to drink earlier makes your belly complain, reminding you that you haven’t eaten since dinner last night.

Breathe, says the machine. And you do.

The technician comes back in, saying, “Don’t move, ma’am. I’m just going to start the contrast now. Keep very still.” He presses a few buttons and there is a beep as the IV in your arm empties some iodine-based substance into your bloodstream. It is simultaneously cold and feels like fire in your vein, but you don’t complain. You know it will be over shortly. Still, he sees you grimace and apologizes. “Sorry, we’re almost done.”

He leaves once more and the whirring sound spins up again. Breathe in, the machine says. Hold your breath.

The table moves and you tell yourself not to worry. You are used to these tests now. The voice in the machine has been the same every place you’ve had them. Like an old friend, reminding you…

Breathe.

Posted in writing

Some Considerations for the Coming Year

It is okay to not engage in figuring out what other people are thinking. It is perfectly acceptable, even, to not try and control what they are thinking. Trying to control other people is insanity, really. You do not want others to control you. Why would it be okay to control them?

There is a lot of stuff in the world that seems unjust, wrong, hateful. We like to categorize such things as malicious, as though there really is a super villain out there twisting a long mustache and rubbing his hands together with glee, saying “Mwahahaha!” Very melodramatic. But really think about that for a moment and consider whether it is rational to believe this. Or is it more rational to think that sometimes one person’s goals work counter to our own? And that to them, you might be the villain? You don’t think you are one. Neither do they.

Try stepping outside yourself, look at yourself objectively. You are not your identifiers. You are not your hair color, your shoe size, your parents’ upbringing, your possessions, your food choices, your illness. These are things you have. They are not what you are. It’s all illusion.

For the coming year, it is my hope to practice compassion and share it with others, and seek a better understanding of it. It is my hope that others do so as well.

Posted in Ruminations, Spirituality

A Quick Thought

Nothing quite compares to an evening with the extended family, having buffet-style foods (of which I eat very little) and playing silly games, ringing bells and listening to Christmas music. I am not a Christian, but my parents are and I respect that. It brought back a lot of memories, some almost 25 years old.

It’s too easy to become insular, to become calcified into my own space and to not venture out or reach into the spaces of others, despite being invited to do so repeatedly. Perhaps they’d come to understand who I am now (as opposed to who I was 20 years ago) if more time was spent together.

Posted in hometown, Ruminations

Tell me lies, tell me sweet little lies

I told an untruth recently. Not here, elsewhere. On a forum. A toxic place that I keep finding myself going back to after walking away for months or years at a time. Like when you break up with that person you were seeing in high school, run into them again later in life and find yourself interested and attracted all over again. Then after a few weeks you are reminded of why you broke it off in the first place. It’s especially egregious when it’s been several years, you’re both getting older, and yet for some reason, they have not changed in any way that you can tell. Or perhaps they have changed in some areas, but are still clinging to some behaviors that are childish and annoying.

The person I told this lie to (and let’s ignore the fact that telling one person something in message board forum environment is the same as telling every one of the 8000 or so members) wasn’t even speaking to me; they were following around a newbie who had offended them in another thread, for having the gall to be ignorant about something (which she’d made no effort to claim otherwise). So I stuck my nose in, and in the end, exclaimed a lack of belief in the Fae. All because she kept admonishing others that “they are dangerous” and that she is “terrified of them”.

I know! How silly, right? What a thing to be bothered by.

But honestly. Someone has been reading too much Dresden Files lately. I stopped short of asking her to please provide empirical evidence beyond “the lore” (whose lore? which version? what year? which culture?) that showed we had anything to fear from invisible goblins that no one can see. And to please elaborate which culture’s Fae beings she was referring to.

That makes me a Bad Pagan (TM).

But there isn’t an actual Pagan Community. It is a lie. There are people who collectively agree “we do not worship the God of Abraham”, but agreement usually stops there. I find it hard to take seriously a group of people who will actively believe in fairies, while at the same time espousing their cleverness for pointing out that they always consider the mundane before the magical. I also can’t feel comfortable associating myself with a “community” that tries to pick and choose for you which orthopraxy you are allowed to embrace, based only on your ancestry. But only sometimes. You can be a Celtic Reconstructionist, if that is the only path you follow, even if your entire family lineage is traced back to Russia. (Except in the cases of people who think you can’t do that.) However, if you choose to honor Brighid on February 2nd, and you’re not a Recon, then you are appropriating. Except when you aren’t.

It occurs to me that when one involves themselves in a “religious community”, one is subjected to the opinions of your fellow travelers on a religious path. Paganism has so many differing opinions that newer seekers can become disenchanted and confused and maybe just give up. Paganism is not a religious path. It’s just some umbrella term to basically express what you are not (e.g. not a Christian). And to that end, I find the term fairly useless to me.

But what about that lie? Yeah, I said that so that person would shut up about the Fae already. I’m not actually sure I believe in fairies as an actual existing entity, but I sure do believe that the stories people told about them were meant to a) explain phenomena they couldn’t otherwise understand and b) scare the children into behaving. Confirmation bias – it became canonical that fairies are dangerous through generations of storytelling.

The fact is, the truly dangerous ones are us.

Posted in Spirituality, tough love

The lure of competition

I’ve been thinking a lot lately about the tendency of people to compete, even when it seems like an inappropriate time to do so. Perhaps compete isn’t the right word, but there appears to be a general mood of defensiveness amid web commenters and forum users.

An article on Huffington Post about the benefits of yoga leads to a comment section devoted to each person telling the next that “nope, this other thing is better” or defensively expressing that they’d participate in what the article suggests, if only it weren’t for some malady/childhood trauma/personal roadblock. It’s as though those compelled to share those things can’t conceive of a world where articles are there for reading and considering, not to pass down judgement, as though not doing the suggested activity reflects poorly on them. Or else, they feel the need to share that this other thing they do is better, and therefore the article is wrong. And they feel quite clever for having figured out where someone is wrong. All because someone wanted to share an infographic detailing some of the benefits of yoga.

Discussion of the pervasiveness of pedantry and meanness in comment sections has been going on for a long time, but I don’t think this is what is happening here. To me, this looks more like the propensity of some to feel the need for a boost to their self-confidence, thinking that correcting someone else, or admonishing them that there’s something they missed, looking for where the other shoe could drop or the sky could fall, makes them look like the smarter person in the room. It draws the attention away from the blog post/video/article/forum post, and puts the spotlight on their big brain. With so much media from very smart people being available to us 24/7/365, is it any wonder that some of us feel like the least clever person in the room? Competition for eyeballs on social media (increase your followers! ask me how!) teaches us that the goal of the internet is to Win All the Followers. And then we try to perform for them like dancing monkeys. It’s like that high school popularity thing, except that phenomenon actually having an impact on our lives? It was supposed to end after graduation. Most people grow out of it, the need to collect followers.*

It comes back around to my decision some time ago to disable commenting on this blog. What I write here, it’s observations, thoughts, opinions. It’s not up for debate. And, if something I say needs challenging, there are other ways to reach me. But here’s the thing: I am no obligated to provide the platform for that debate. Because in providing that platform, I would be handing over the spotlight to a commenter, and detracting from my own writing. In fact, my position on this was solidified when I read similar thoughts from a blogger I respect, Teo Bishop when he closed commenting on his site, Bishop In the Grove:

[…]it doesn’t really matter whether or not the comments are positive or negative, for every comment that exists as an addendum to the writing I’ve done on the blog changes the context of the subject I’m writing about. The feedback re-contextualizes the original writing, and sometimes I find myself feeling the need to be in dialogue with this new, altered perspective rather than the experience that brought me to write in the first place[…]

Original post here.

Some blogs are meant to document a journey, and this is one of them. I feel confident and comfortable in the decision to keep the feedback out, where it isn’t asked for. Some people take that as an affront to their sensibilities. Call it censorship. Which is absurd. It’s not censorship to not enable comments. Readers are welcome to comment all they like, someplace else. The reason they get upset isn’t because they’re being censored, it’s because they don’t have the benefit of your blog’s readership to bolster their ego and compete for attention in this noisy, clamoring internet.

*Unless you are advertising something, I guess.

Posted in Ruminations, tough love, writing

Practicing non-attachment

It’s been about 2 weeks now, since Mr. Luna and I moved ourselves and our kitties out of my in-laws’ rec room and into our own apartment. We’d been there since the end of February, and that was quite enough of that, thank you. It’s not that I ever felt unwelcome there in any way, far from it. But it was not our home.

So now, we have taken a very (VERY) small apartment about 3 miles up the road. And a lot of our stuff is still in boxes (either at the in-laws or in our storage unit) because it is oh-so-small. However, living minimally is an excellent lesson in non-attachment, specifically to material objects. I had thought we’d learned it well when we parted with so much before our move from Texas happened. Even after having done so, our moving truck was packed from bottom to top, front to back. It was amazing and I couldn’t understand how we’d accumulated so much, except perhaps the fact that we were living on a (defunct) farm by then, we had lots of room to spread out. And accumulate things.

So, we went from that to camping out in a rec room that already had a lot of stuff in it, and it compelled us to leave a lot of things stored away. Now that we’ve moved into our own (small) place, we’ve started to cull even more things. The washer & dryer we moved with (because we didn’t know how long we’d be without our own place, nor whether that place could accommodate them) are now being sold to my sister-in-law. The refrigerator will be passed along to my parents-in-law for use in their apartment building, in the next apartment that empties and needs updating. I’ve actually started to really examine things like clothes and shoes: do I wear this, ever? Am I keeping it for the wrong reasons? Closet space is limited, and sometimes it’s just time to say goodbye to something that I’ve been “planning to fix or alter” for a year or more. Let go of those things and it makes it all right to replace them. With maybe just one thing.

I still have not mastered non-attachment. There are things I continue to store because I love them, am really attached to them for nothing more than sentimental reasons. There are things that distress me when I have to let go of them. Losing some of my hair, for instance! I struggle with that constantly. Now that I’ve stopped chemotherapy, though, it’s begun growing back. My scalp is no longer this blatant pale line amid my otherwise reddish hair. Of course what is growing back in completely lacks pigment, so it looks a bit like I’d dyed my hair about 3 months ago and it’s grown out, like there’s a line of demarcation. Odd, that. So I guess I was both literally and metaphorically “attached” to my hair, and am quite glad that it’s coming back. It’s a ‘practice’, not a ‘perfect’.

Posted in Ruminations, Spirituality Tagged ,

Jesse Lee Ross

And now, because I want to promote the artists local to my region, here is Jessi Lee Ross and her beautiful ambient music:

 

Posted in hometown, music

Reconnecting With My Landbase

In 1997, I was 24. I married the man I’d already been living with for nearly 5 years and together, we set off for San Francisco, California, like lots of people my age were doing at the time. The economy was doing well and there were jobs to be had, even with little to no experience. A friend was already there, and told us the company he was with had loads of openings, if only you were willing to work through a temp agency for the first 6 months (for me it ended up being a year – a hiring freeze happened not long after I started). Five years later, I was still employed there, even through 6 months of being on medical leave with my primary diagnosis of cancer. It was easier then – the company is enormous, and a sick leave pool was always on tap to make up for what the California Temporary Disability payments didn’t cover. But then, the Tech Bubble burst, and layoffs happened. We decided to take the opportunity to move somewhere else new and exciting: Austin, Texas.

“You can see a live band every night of the week for a year, and never see all there is to offer in Austin.” That was one of the phrases a friend of ours used to lure us there. He’d already been living there for four years and loved the nightlife scene. Well, I wasn’t much of a nightlife kinda gal, but my husband was keen and I was ready to move on to someplace warmer. (Boy was I in for a surprise.) We ended up staying there for 10 years (this is without the 10 months where we attempted to have a coffee shop in Pennsylvania on a “broken shoestring budget”Smilie: ;), and the last 3 years were mostly because we needed health insurance. Really, we’d ceased being happy there about 2 years into it, but we were stuck, and kept trying to make the best of it, moving from one house to another and trying to “look on the bright side.”

In early 2013, we found an “angle” to get back home, to our landbase. And it has been the best thing we’ve ever done. There are challenges, and it’s not over yet. My husband keeps telling me that “as a last resort” we could move back to Texas, if it meant keeping my job (and thus, health coverage – which, with the Affordable Healthcare Act, should not be a problem after this year). I consider moving back to Texas a last resort AFTER every possibility is exhausted INCLUDING living in a box on the street in Philadelphia in winter. Yes, I am serious.

Because I am so in love with my home state, even my hometown these days, that I never want to leave. This region is absolutely gorgeous. Yes, it dies back in winter and looks grey and dreary. But when I was younger, I didn’t appreciate what the land was doing; it was resting after working so hard all spring, summer and fall. The colors of those seasons were always such a delight, how could we endure the cold and the grey for 3 months, right? Except it’s only 3 months. The rest of the year we get such amazing scenes all around us!

Everywhere we go of late, I have some deeply imprinted memory of my childhood that comes rushing back. And much of it is good, pleasant memories. We’ve been exploring a lot of the hiking trails and the streams that are open to everyone and the back road drives… and it’s breathtaking. Last night, we walked on one of the paved trails just at sunset. Part of it is a bridge crossing over the local reservoir where people fish and kayak during the day. We sat on a bench on that bridge and watched the clouds until the sky was dark, then started walking back to our car. As we reached a section where there were trees and long grasses, the night came alive with the sparkle of fireflies all around us. We had to stop and stare and watch the show, because isn’t this so much more real than anything portrayed on the TV screen? THIS is reality and it’s incredible. Magical. We stood for 45 minutes, watching and thanking the gods for their gift.

This is my home. I’m so happy to be here.

Posted in hometown